ROUTLEDGE HANDBOOK OF

GLOBAL HEALTH RIGHTS

This book examines the idea of a fundamental entitlement to health and healthcare from a
human rights perspective.
The volume is based on a particular conceptual reasoning that balances critical thinking and
pragmatism in the context of a universal right to health. Thus, the primary focus of the book
is the relationship or contrast between rights-based discourse/jurisprudential arguments and
real-life healthcare contexts.The work sets out the constraints that are imposed on a universal
right to health by practical realities such as economic hardship in countries, lack of appropriate
governance, and lack of support for the implementation of this right through appropriate
resource allocation. It queries the degree to which the existence of this legally enshrined right
and its application in instruments such as the International Covenant on Economic, Social and
Cultural Rights (ICESCR) and the Universal Declaration of Human Rights (UDHR) can be
more than an ephemeral aspiration but can, actually, sustain, promote, and instil good practice.
It further asks if social reality and the inequalities that present themselves therein impede the
implementation of laudable human rights, particularly within marginalised communities and
cadres of people. It deliberates on what states and global bodies do, or could do, in practical
terms to ensure that such rights are moved beyond the aspirational and become attainable and
implementable. Divided into three parts, the first analyses the notion of a universal inalienable
right to health(care) from jurisprudential, anthropological, legal, and ethical perspectives.
The second part considers the translation of international human rights norms into specific
jurisdictional healthcare contexts. With a global perspective it includes countries with very
different legal, economic, and social contexts. Finally, the third part summarises the lessons learnt
and provides a pathway for future action.
The book will be an invaluable resource for students, academics, and policymakers working
in the areas of health law and policy, and international human rights law.

Clayton Ó Néill, LLB (Ulster), LLM (Dub), BCL (Oxon), PhD (Durham), FHEA, is a Lecturer
in Law at Queen’s University Belfast, Northern Ireland. He has published a monograph, titled
Religion, Medicine and the Law (Routledge 2018).

Charles Foster is a Visiting Professor at the University of Oxford, UK, a fellow of Green
Templeton College, Oxford, a Senior Research Associate at the Uehiro Institute for Practical
Ethics, Oxford, and a Research Associate at the Ethox Centre and the HeLEX Centre at the
University of Oxford.

Jonathan Herring is the DM Wolfe-Clarendon Fellow in Law at Exeter College, UK, and a
Vice Dean and Professor of Law at the University of Oxford, UK.

John Tingle is a Lecturer in Law at the University of Birmingham, UK, and a qualified
Barrister. His research interests are in the areas of global and English patient safety, nursing law,
and universal health coverage. He is a Visiting Professor of Law at Loyola University School of
Law in Chicago, Illinois, USA.
ROUTLEDGE HANDBOOK OF
GLOBAL HEALTH RIGHTS

Edited by Clayton Ó Néill, Charles Foster,

Jonathan Herring, and John Tingle
 First published 2021
by Routledge
2 Park Square, Milton Park,Abingdon, Oxon OX14 4RN
and by Routledge
605 Third Avenue, New York, NY 10158
Routledge is an imprint of the Taylor & Francis Group, an informa business
© 2021 selection and editorial matter, Clayton Ó Néill, Charles Foster, Jonathan Herring and John Tingle;
individual chapters, the contributors
The right of Clayton Ó Néill, Charles Foster, Jonathan Herring and John Tingle to be identified as the authors of
the editorial material, and of the authors for their individual chapters, has been asserted in accordance with sections
77 and 78 of the Copyright, Designs and Patents Act 1988.
All rights reserved. No part of this book may be reprinted or reproduced or utilised in any form or by any
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British Library Cataloguing-in-Publication Data
A catalogue record for this book is available from the British Library
Library of Congress Cataloging-in-Publication Data
Names: Ó Néill, Clayton, editor, author. | Foster, Charles, 1962-, editor, author. | Herring, Jonathan, editor, author.
| Tingle, John, editor, author.
Title: Routledge handbook of global health rights / edited by Clayton Ó Néill, Charles Foster, Jonathan Herring
and John Tingle.
Description: Milton Park,Abingdon, Oxon ; New York, NY : Routledge, [2021] | Includes bibliographical
references and index.
Identifiers: LCCN 2020053762 (print) | LCCN 2020053763 (ebook) | ISBN 9780367276393 (hardback) |
ISBN 9780429297021 (ebook)
Subjects: LCSH: Right to health. | Human rights.
Classification: LCC K3260.3 .R68 2021 (print) | LCC K3260.3 (ebook) | DDC 344.03/21--dc23
LC record available at https://lccn.loc.gov/2020053762
LC ebook record available at https://lccn.loc.gov/2020053763
ISBN: 978-0-367-27639-3 (hbk)
ISBN: 978-1-032-00460-0 (pbk)
ISBN: 978-0-429-29702-1 (ebk)
Typeset in Bembo
by Deanta Global Publishing Services, Chennai, India
 CONTENTS

Table of cases viii

Table of agreements xii
Table of secondary legislation xiii
Table of statutes xiv
List of contributors xvi

PART A
International human rights and the right to health 1

1 An introduction to health rights as they apply in a global landscape 3

Clayton Ó Néill

2 Universal Declaration of Human Rights, part 1:Articles 1, 2, 3, 5, and 6 11

Charles Foster

3 Universal Declaration of Human Rights, part 2:Articles 7, 12, 16, 18, 19,
and 25 23
Jonathan Herring

4 A global right to health amid global health emergencies 47

Clayton Ó Néill

5 Global health rights in the Inter-American Court of Human

Rights: On the doctrine of the minimum core obligations and a
co-responsibility to care 62
Thana C de Campos-Rudinsky

v
 Contents

PART B
Health Rights across the temporal stages in specifc countries 79

Beginning of life and children 81

6 Assisted reproductive technologies in Uganda: Law and practice 83

Zahara Nampewo

7 Abortion and conscience:A crossroads for Northern Ireland 102

Clayton Ó Néill

8 The standard of care and implications for paediatric decision-making:

The Swedish viewpoint 122
Santa Slokenberga

Middle of life 153

9 The right to health in Hong Kong: Incorporation, implementation, and

balancing 155
Edward Lui

10 ‘Dignity’ in the adjudication of healthcare rights in India 168

Sushant Chandra

11 Universal health coverage and the right to health in Nigeria 180

Cheluchi Onyemelukwe

12 Realising the right to health in Kenya: Connecting health governance

outcomes to patient safety perspectives 205
Naomi N Njuguna

13 Developing an intrinsic patient safety culture in health systems:The

NHS experience 227
John Tingle

14 Clinical negligence litigation procedure, policy, and practice in

England:The product of a legal cycle rather than an application
of a right to health? 244
Stephen King

15 Patient safety and human rights 259

Helen Hughes

vi
 Contents

16 Fundamental rights to health care and charging overseas visitors

for NHS treatment: Diversity across the United Kingdom’s devolved
jurisdictions 279
Jean V McHale and Elizabeth M Speakman

17 Public reporting, transparency, and patient autonomy in the province

of Quebec 299
Lara Khoury

End of life 315

18 Human tissue, human rights, and humanity 317

Jesse Wall

19 Autonomy and the right to (end one’s?) life:A German perspective 332
Carsten Momsen and Mathis Schwarze

20 Voluntary assisted dying law reform in Australia and New Zealand 348
Ian Freckelton

21 Comparative perspectives on medical aid in dying:The United States

and Canada 367
Barbara A Reich

PART C
The application of a universal right to health in practice 387

22 A right to health:A right granted and agreed, but limited or denied? 389
Clayton Ó Néill and Charles Foster

Index 401

vii
 TABLE OF CASES

A, B and C v. Ireland [2011] 53 EHRR 13, ................................................................. 109n18

AB v. Minister of Social Development (CCT155/15) [2016] ZACC 43; 2017 (3)
BCLR (CC); 2017 (3) SA 570 (CC) (29 November 2016) [313], ................................... 84
Adeyinka Badejoh and others v. Federal Ministry of Education and others, ............................ 188n50
A G Ondo State v.A G Federation, ............................................................................. 189, 199
Al-Skeini v. United Kingdom (Application No 55721/07), ............................................. 263n14
Alyne da Silva v. Brazil, ....................................................................................................... 30
Andhra Kesari Education Society v. Director of School Education (1988) 4 SC 431(India), ....... 169n15
Archbishop Olubunmi Okogie and others v.Attorney General of Lagos (1981)
2 NCLR 331, ........................................................................................................ 188n50
Asiye Genc v.Turkey App no 24109/07, .......................................................... 126n26, 159n37
Associated Provincial Picture Houses Ltd v.Wednesbury Corporation [1948]
1 KB 223, 234, ....................................................................................................... 159n41
Attorney General v. X, ....................................................................................................... 109
Azubike v.Attorney General of the Federation [2004] Suit No. FHC/PH/CS/679/2003
(Nigeria), .................................................................................................................... 193
Bandhua Mukti Morcha v. Union of India (1984) AIR SC 802 (India), ............... 169n17, 173n50
Bank Mellat v. HM Treasury (No 2) [2014] AC 700, ....................................................... 164n82
Bataliny v. Russia,App no 10060/07, ........................................................................... 126n22
Baxter v. Montana, 2009 MT 449, ................................................................................ 372n24
Bolam v. Friern Hospital Management Committee [1957] 1 WLR 582, .............................. 256n20
Bolitho v. Hackney Health Authority [1998] AC 232, ...................................................... 257n21
Bugdaycay v. Secretary of State for the Home Department [1987] AC 514, 531, ................... 159n42
Calvelli and Ciglio v. Italy,App no 32967/96, ............................................................... 126n27
Cantoni v. France,App no 17862/91, .......................................................................... 147n185
Carter v. Canada (Attorney General), 2012 BCSC 886; [2015] SCC 5; [2015] 1 SCR 33;
[2015] 1 SCR 331, ......................................................... 349n5, 359–360, 374n37, 374n39
Case of Centre for Legal Resources on behalf of Valentin Câmpeanu v. Romania,
App no 47848/08 (ECtHR, 17 July 2014), ............................................................. 125n19
Cathay Pacific Airways Flight Attendants Union v. Director-General of Civil Aviation
[2007] 2 HKC 393, ................................................................................................ 159n40

viii
 Table of cases

Catholic Diocese of Hong Kong v. Secretary for Justice [2007] 4 HKLRD 483, .................... 158n28
Centre for Reproductive Medicine v. Mrs U [2002] EWCA Civ, 565, [2002] I FLR 927, ........... 89
Chan Mei Yee v. Director of Immigration [2000] HKCFI 1521, ......................................... 160n44
Chan To Foon v. Director of Immigration [2001] 3 HKLRD 109; (n 44) 133, ....... 160n44, 160n45
Chirstine Kidha v. Nairobi Womens Hospital (2016) eKLR, ............................................... 208n8
Christopher John Wake and Djiniyinni Gondarra v. Northern Territory of Australia and
The Honourable Keith John Austin Asche AC,The Administrator of the Northern Territory
of Australia, ............................................................................................................... 350n8
Chung Kwok Man v.The Hong Kong Housing Authority [2016] 3 HKLRD 592, ............. 159n39
Clean Air Foundation Ltd v.The Government of the HKSAR [2007] HKCFI 757, ............ 160n48
Comilang Milagros Tecson v. Director of Immigration (2019) 22 HKCFAR 59, ...... 156n14, 157n20
Consumer Education Research Society v. Union of India (1995)
3 SCC 42 (India), ........................................................... 169n12, 169n14, 171n33, 173n41
Cuscul Pivaral et al. v. Guatemala, ................................................................... 62–63, 69–75, 77
D v. United Kingdom (1997) 24 EHRR 423, ....................................................................... 20
David Tracey v. University Hospitals Cambridge NHS Foundation Trust and Secretary
of State for Health (2014) EWCA Civ 33, ................................................................ 271n53
Dermit Barbato v. Uruguay, communication No. 84/1981, ............................................... 17n31
Dickson v. United Kingdom, ................................................................................................. 84
Drolet v. Parenteau [1991] RJQ 2956, ........................................................................... 309n86
Edwards v. United Kingdom [2002] ECHR 303, .............................................................. 17n33
Erdinç Kurt and Others v.Turkey,App no 50772/11, ............................. 20n58, 126n29, 127n30
Evans v.Amicus Healthcare [2004] EWCA Civ 727, ............................................................. 89
Evans v. the United Kingdom, ............................................................................................... 84
Femi Falana v.Attorney General of the Federation FHC/IKJ/CS/M59/2010, ................... 193n73
Fernandes De Oliveira v. Portugal App no 78103/14, ......................................... 126n26, 127n31
Fok Chun Wa v. Hospital Authority [2008] HKCFI 1143, ............................................... 158n28
Francis Coralie Mullin v.Administrator of Delhi AIR 1981 SC 746, .................................. 169n14
GA v. Director of Immigration (2014) 17 HKCFAR 60, ....................... 156n14, 157n18, 157n23
Georgi Ivanov Elchinov v. Natsionalna zdravnoosiguritelna kasa, ......................................... 127n33
Georgina Ahamefule v. Imperial Medical Centre, .................................................................... 192
Geraets-Smits v. Stichting Ziekenfonds VGZ, ................................................................... 130n53
Gideon Kilundo & Daniel Kilundo Mwenga v. Nairobi Women’s Hospital
(Petition No. 242 of 2018) (2018) eKLR, .................................................................... 208
Gonzales v. Oregon, 546 US 243 (2006), ....................................................................... 372n22
González et al. (“Cotton Field”) v. Mexico, ....................................................................... 17n28
Greater Glasgow Health Board v. Doogan and Another [2014] UKSC 68, .................... 115, 393n3
Harksen v. Lane No 1998 (1) sa 300 (cc), ...................................................................... 176n68
Hernández v. Argentina, .................................................................................................. 69n27
Hopp v. Lepp [1980] 2 SCR 192, ......................................................................... 210, 309n86
Hospice New Zealand v.Attorney-General [2020] NZHC 1356, ...................................... 362n56
Hristozov v. Bulgaria, ...................................................................................................... 21n61
Human Fertilization and Embryology Authority ex parte Blood (1997) 2 WLR 807, .................. 89
Hysan Development Co Ltd v.Town Planning Board (2016) 19 HKCFAR 372, ................ 156n10
In re an Application by Wong Chun-sing and Ng Fook-yiu for Judicial Review [1984]
HKLR 71, 74–75, .................................................................................................. 157n22
International Planned Parenthood Federation – European Network (IPPF EN) v. Italy, .......... 129n46
Janaway v. Salford Area Health Authority [1989] AC 537 (HL), ..................... 115, 119n48, 393n2

ix
 Table of cases

Jonah Gbemre v. Shell Petroleum Development Company Nigeria Limited and others
Suit No: FHC /B/SC/53/05, ..................................................................................... 189
JOO (also known as JM) v.Attorney General & 6 Others (2018) eKLR, ........................... 216n38
Joseph Odafe and Others v.Attorney-General of the Federation and Others, ............................... 193
Kesavananda Bharati v. State of Kerala AIR 1973 SC 1461(India), .................................. 170n20
Kokkinakis v. Greece,App no 14307/88, ..................................................................... 147n183
Kwok Wing Hang v. Chief Executive in Council [2020] 1 HKLRD 1, ............................. 162n62,
162n63, 163n70
Lantsova v. Russian Federation (CCPR/C/74/D/763/1997), .......................................... 17n32
Laxmi Mandal v. Deen Dayal Hospital Harinagar WP (C) Nos 8853 of 2008, .................. 174n51
LC v. Peru CEDAW/C/50/D/22/2009 (2011), ................................................................. 27
Lee v. Oregon, 107 F3d 1382 (9th Cir 1997), ................................................................ 371n19
Legal Defence and Assistance Project (LEDAP) GTE & LTD v. Federal Ministry of
Education & Anor (2017w), Suit No FHC/ABJ/CS/978/15, .................................... 190n57
Leung Kwok Hung v. HKSAR (2005) 8 HKCFAR 299, ............................................... 165n88
Leung Kwok Hung v. Secretary for Justice [2020] HKCA 192, .......................................... 163n71
Liivik v. Estonia,App no 12157/05, ........................................................................... 147n186
Lopes de Sousa Fernandes v. Portugal, App no 56080/13; (2018)
66 EHRR 28, ............................................................................. 125n19, 126n25, 159n35
Maneka Gandhi v. Union of India (1978) AIR SC 597 (India), ....................................... 178n77
MAO & Another v.AG & 4 Others (2015) eKLR, ........................................................... 208n9
McGlinchey v. UK App No 50390/99, 37 EHRR 41 (2003), .............................................. 21
Medical Decision-Making on Behalf of Children Post-Great Ormond Street Hospital v. Gard
(Hart Publishing 2019) 191–206, .............................................................................. 123n8
Mehmet Şentürk and Bekir Şentürk v.Turkey (2013) 60 EHRR 4 (2015)
60 EHRR 4, ............................................................................................. 159n36, 281n10
Mellet v. Ireland (CCPR/C/116/D/2324/2013), ........................................................... 19n48
Minister of Justice and Correctional Services v. Estate Late James Stransham-Ford [2017]
1 All SA 354; 2017 (3) SA 152 (SCA), .................................................................... 359n46
Miranda Cortez et al. v. El Salvador, ................................................................................. 43n76
Mohd Ahmed (minor) v. Union of India (2014) 6 HCC (del) 118, ........... 168n4, 170n18, 170n22,
170n23, 170n25, 171n32,
175, 176n68, 176n70
Montgomery v. Lanarkshire Health Board [2015] UKSC 11, ............................................. 257n22
Ng Ka Ling v. Director of Immigration (1999) 2 HKCFAR 4, 25, ...................................... 156n4
Ng Siu Tung v. Director of Immigration (2002) 5 HKCFAR 1, ......................................... 159n39
No FHC/ABJ/CS/978/15, ....................................................................................... 190n57
Odafe and Others v.Attorney-General and Others Suit No. FHC/PH/CS/680/2003;
(2004) AHRLR 205 (NgHC 2004) (2004) AHRLR 205 at 211; (2005)
CHR 309, ............................................................................................................. 193n72
Pagtama,Victorina Alegre v. Director of Immigration [2016] HKCFI 34, ............................. 160n44
Parmanand Katara v. Union of India (1989) 4 SCC 286(India), .......................... 170n22, 171n32
Paschim Bagga Mazdoor Khet Samiti Khet v. State of West Bengal (1996) 4 SCC 37, ........ 171n34,
174n51, 174n56
Peerbooms v. Stichting CZ Groep Zorgverzekeringen, ........................................................ 130n53
Poblete Vilches y otros v. Chile, ......................................................................................... 69n25
Pretty v.The United Kingdom (2002) 3(10) German Law Journal E4, .................................. 349
R v. Barnet London Borough Council, Ex parte Shah [1983] 2 AC 309, ............................ 284n30

x
 Table of cases

Ramji Tiwari v. State of UP and others (1997)1UPLBEC 690, ......................................... 169n15

Reibl v. Hughes [1980] 2 SCR 880, 884, ...................................................................... 309n86
Republic v.Transition Authority & Ano Ex parte Kenya Medical Pharmacists and Dentists
Union and 2 Others, ................................................................................................ 213n26
R (Nicklinson) v. Ministry of Justice [2014] UKSC 38, ...................................................... 18n42
Rõigas v. Estonia (Application no. 49045/13), ............................................................... 126n28
R (on the application of Nicklinson and another) v. Ministry of Justice [2014] UKSC 38, ...... 108n15
Scialaqua v. Italy (1998) 26 EHRR 164, ....................................................................... 281n11
Seales v. Attorney-General [2015] 3 NZLR 556; [2015] NZHC 1239, .............. 359n44, 360n47
SH v. Austria [2011] ECHR 1878, ..................................................................................... 37
Snehlata v. State of UP PIL NO. 14588 of 2009 (Allahabad High Court) (India), ......... 170n24,
170n27, 177n75
Song Rai v.The Coroner of Hong Kong [2011] 2 HKLRD 245, ...................................... 159n34
State of Maharashtra v.Vikas Sahebrao Roundale (1992) 5 SC 175(India), ......................... 169n15
State of Punjab v. Mohinder Singh Chawla (1997) 2 SCC 83, ............................. 171n34, 174n51
State of Punjab v. Ram Lubhaya Bagga (1998) 4 SCC 118; (1998) 1 SCR 1120, ............ 170n21,
171n34, 174n51
Stransham-Ford v. Minister of Justice and Correctional Services [2017] 1 All SA 354;
2017 (3) SA 152 (SCA), .............................................................................................. 359
Sudhir Jaiswal v. State of UP Writ No 1568 of 2017 (Allahabad High Court) (India), ..... 177n74
SW v.The Secretary for Justice [2019] 1 HKLRD 768, ................................................... 159n34
SWK & 5 Others v. Medecins Sans Frontier France & 10 others
(Petition No. 605 of 2014), ..................................................................................... 209n11
Toussaint v. Canada (CCPR/C/123/D/2348/2014), ..................................................... 17n36
Tryphosa Jebet Kosgey v. Eldogn View Hospital (2016) eKLR, ............................................ 208n8
Ubamaka Edward Wilson v. Secretary for Security (2012) 115 HKCFAR 743, ................... 156n14
Unnikrishnan v. State of AP (1993) 1 SCC 645 (India), ................................................. 170n20
Vacco v. Quill, 521 US 793 (1997), ............................................................................... 371n16
Vasileva v. Bulgaria,App no 23796/10 (ECtHR, 17 March 2016), ................................. 125n19
Vasyukov v. Russia,App no 2974/05, ........................................................................... 126n20
Veronica Nyangai v. Nairobi West Hospital Ltd (2017) eKLR, ............................................ 208n8
Vo v. France (2004) 40 EHRR 12, .................................................................................... 108
Washington v. Glucksberg, 521 US 702 (1997), ............................................................... 371n16
Ximenes Lopes v. Brazil, ...................................................................................... 62–63, 74–77
Zhumbaeva v. Kyrgyzstan (CCPR/C/102/D/1756/2008), ............................................. 17n31

xi
 TABLE OF AGREEMENTS

Convention against Torture (CAT), ................................................................................... 11

Convention on the Elimination of All Forms of Discrimination against
Women (CEDAW), ................................. 4–5, 11, 13, 27, 30, 38, 41, 51, 102–103, 105–109,
111–112, 115, 117, 119–120, 184, 279n1
Convention on the Elimination of All Forms of Racial Discrimination (CEAFRD), .......... 11
Convention on the Rights of the Child, .............................................................................. 5
European Convention on Human Rights (ECHR), ................... 4, 11, 17n33, 18, 20–21, 102,
107–108, 112, 114, 117–118, 126,
147–148, 262–264, 271, 281–282, 395
International Covenant on Civil and Political Rights (1966) (ICCPR), ............ 11–16, 19–21,
49–51, 125n15, 126,
156, 159–160, 166, 348
International Covenant on Economic, Social and Cultural
Rights (1966) (ICESCR), .................................... 4–9, 11, 13, 16, 40–41, 42, 43, 48–51, 58,
62–65, 69, 77, 125n1, 127, 137, 156–160, 162,
185, 191, 197, 219, 247, 261, 348, 390–392, 394–396
Prohibition on Face Covering Regulation (Hong Kong), ................................................ 161
Prohibition on Group Gathering Regulation (Hong Kong), ............................................ 163
UN Convention against Torture and Other Cruel, Inhuman or Degrading
Treatment or Punishment, ...................................................................................... 263n16
UN Convention on Rights of the Child (1989) (CRC), ............................................ 11, 122
UN Convention on the Rights of Persons with Disabilities (CRPD), ............... 11, 13–14, 17,
20n53, 28, 29n24
Universal Declaration of Human Rights (1948) (UDHR), .......... 4–5, 7, 9, 11–17, 19–22, 38, 44,
48–50, 125, 157, 208, 247, 367, 390

xii
 TABLE OF SECONDARY
LEGISLATION

Abortion (Northern Ireland) Regulations 2020, .............................................................. 106

African Commission on Human and Peoples’ Rights,‘Guidelines, ................. 191n62, 192n66
Constitution of the Federal Republic of Nigeria, 1999, ...................................... 188n49, n51
Constitution of the Republic of Nigeria 1999, ........................................................... 188n48
Council Directives 90/385/EEC and 93/42/EEC (Text with EEA relevance)
OJ L 117, 5.5.2017, 1–175, ..................................................................................... 131n60
Directive 2001/83/EC of the European Parliament and of the Council of
6 November 2001, ................................................................................................. 131n60
Directive 2001/83/EC, Regulation (EC) No 178/2002 and Regulation (EC)
No 1223/2009, ...................................................................................................... 131n60
Directive 2005/36/EC of the European Parliament and of the Council of
7 September 2005, ................................................................................................. 131n62
Directive 98/79/EC and Commission Decision 2010/227/EU, .................................. 131n60
National Health Service (Charges to Overseas Visitors) (Amendment)
(Wales) Regulations 2009, ...................................................................................... 292n85
National Health Service (Charges to Overseas Visitors) (Scotland)
Regulations 1989, .................................................................................................. 292n86
Northern Ireland Assembly Committee for Health, Social Services and Public
Safety, 2014, ........................................................................................................... 291n77
Provision of Health Services to Persons not Ordinarily Resident Regulations
(Northern Ireland) 2015, ........................................................................................ 293n90
Regulation (EU) 2017/745 of the European Parliament and of the Council of
5 April 2017, .......................................................................................................... 131n60
Regulation (EU) 2017/746 of the European Parliament and of the Council of
5 April 2017, .......................................................................................................... 131n60

xiii
 TABLE OF STATUTES

Abortion Act 1967 (GB), ......................................................................................... 104, 120

s 1, ....................................................................................................................... 104n6
s 4, ............................................................................................................ 114, 115, 118
African Charter Act
Art 16, .................................................................................................................... 193
Assisted Suicide Prevention Restriction Act of 1997 (US), ............................................... 371
Canada Health Act of 1984, ............................................................................................ 368
Child Rights Act (NG), .................................................................................................. 197
Crimes Act 1961 (NZ), ................................................................................................... 359
Criminal Justice Act (NI) 1945
s 25(1), ................................................................................................................... 107
Death with Dignity Act (OR, US), .......................................................................... 337, 371
Death with Dignity Bill 2003 (NZ), ................................................................................ 359
Death with Dignity Bill 2016 (SA), ................................................................................. 351
Discrimination against Persons with Disabilities (Prohibition) Act 2018 (NG), .......... 200–201
End of Life Choice Act 2019 (NZ), .......................................................................... 348, 362
End of Life Choice Bill 2019 (NZ), ......................................................................... 351, 360
End-of-Life Choices (Voluntary Assisted Dying) Bill 2020 (TAS), .................................... 351
Equality Act 2010 (UK), .......................................................................................... 262–263
European Communities Act 1972, ................................................................................... 247
Euthanasia Laws Act 1997 (Cth), ..................................................................................... 350
Health Act 2017 (KE), .................................................................................................... 210
Health and Medical Care Act (SE), .................................................................................. 136
s 6, .......................................................................................................................... 137
s 7, .......................................................................................................................... 137
Healthcare (European Economic Area and Switzerland Arrangements) Act 2019, ........ 286n49
Health (Regulation of Termination of Pregnancy) Act 2018 (IRL), .................................. 102
s 9, .......................................................................................................................... 110
s 12(1), .................................................................................................................... 110
Human and Peoples’ Rights (Ratification and Enforcement) Act 1983 (NG), ................... 190
Human Rights Act 1998 (UK), .......................................................... 155, 246, 262, 282, 294

xiv
 Table of statutes

Immigration Act 2014 (UK)

s 39, ........................................................................................................................ 285
Life During Pregnancy Act 2013 (IRL), .......................................................................... 109
Mental Capacity Act 2005 (UK), ................................................................................ 285n43
Mental Health Act 1983 (UK), ................................................................................... 285n43
Montana’s Terminally Ill Act (MT, US), ........................................................................... 372
National Health Act 2014 (NG), ............................................................... 187, 197–200, 393
s 3(1), ...................................................................................................................... 198
s 11, ........................................................................................................................ 198
National Health Insurance Scheme Act (NG), ................................................................. 194
National Health Service (Scotland) Act 1978, .................................................................. 283
New Zealand Bill of Rights Act 1990, ............................................................................. 359
NHS Act 1977 (UK), ...................................................................................................... 283
s 121, ................................................................................................................. 283n20
NHS Act 2006 (UK)
s 1, .......................................................................................................................... 246
Northern Ireland (Executive Formation etc) Act 2019, ............................................. 104, 119
s 9, ............................................................................................................ 105, 106, 111
s 9(1), ...................................................................................................................... 106
s 9(2), ...................................................................................................................... 106
s 9(3), ...................................................................................................................... 106
s 9(4), ...................................................................................................................... 106
s 9(5), ...................................................................................................................... 106
s 9(6), ...................................................................................................................... 106
s 9(7), ...................................................................................................................... 106
s 12, ........................................................................................................................ 120
Offences Against the Person Act 1861 (UK)
s 58, ...................................................................................................... 104, 104n5, 107
s 59, ................................................................................................................. 104, 107
Patient Act 2014 (SE), .............................................................................................. 136, 138
Patient Protection and Affordable Care Act (ACA) (US), ................................................. 368
Patient Safety Act 2010 (SE), .................................................................................... 136, 138
Prisons Act (NG)
s 7, .......................................................................................................................... 193
s 8, .......................................................................................................................... 193
Republic of Ireland Miscellaneous Provisions Act 2019, ................................................... 287
Rights of the Terminally Ill Act 1995 (NT), ..................................................................... 349
Transition to Devolution Act 2012 (NG), ........................................................................ 213
Voluntary and Natural Death Bill 1993 (ACT), ............................................................... 349
Voluntary Assisted Dying Act 2017 (Vic), ................................................................. 348, 351
Voluntary Assisted Dying Act 2019 (WA), ........................................................................ 348
Voluntary Assisted Dying Bill 2017 (NSW), ..................................................................... 351
Voluntary Assisted Dying Bill 2019 (WA), ....................................................................... 357

xv
 CONTRIBUTORS

Sushant Chandra is an Associate Professor and Assistant Director of the Clinical Law
Programme at Jindal Global Law School, India. Chandra graduated from Gujarat National Law
University in 2011 with 7 Gold Medals and Best Outstanding Student Award, after which he
pursued the BCL at the University of Oxford, UK. He takes keen interest in public law and legal
philosophy. He is particularly interested in the development of administrative law in India. He
has published widely in various academic and non-academic journals. He assists in directing the
Center on Clinical Programme at the Jindal Global Law School. He is also a full-time member
of the Global Alliance for Justice Education and takes keen interest in its work.

Thana C de Campos-Rudinsky is a Research Fellow at the Princeton Institute for

International and Regional Studies, Princeton, New Jersey, USA; and an Assistant Professor at
the School of Government, Pontifical Catholic University of Chile. Her publications include
The Global Health Crisis: Ethical Responsibilities (Cambridge University Press 2017) and The
Philosophical Foundations of Medical Law (co-edited with Andelka Phillips and Jonathan Herring).

Charles Foster is a Visiting Professor at the University of Oxford, UK; a fellow of Green
Templeton College, Oxford; a Senior Research Associate at the Uehiro Institute for Practical
Ethics, Oxford; and a Research Associate at the Ethox Centre and the HeLEX Centre at the
University of Oxford. He is also a practising Barrister. He has been involved in some of the
leading English medical law cases, such as Nicklinson v Ministry of Justice, Purdy v DPP, and An
NHS Trust v Y. Some of his publications include Human Thriving and the Law (with Jonathan
Herring) (Springer 2018); Identity, Law and Personhood (with Jonathan Herring) (Springer 2017);
Human Dignity in Bioethics and Law (Hart 2012); and Choosing Life, Choosing Death – The Tyranny
of Autonomy in Medical Law and Ethics (Hart 2009).

Ian Freckelton, QC, is a practising Barrister at Castan Chambers, Melbourne, Australia. He

is also a Professorial Fellow in Law and Psychiatry at the University of Melbourne; an Adjunct
Professor of Forensic Medicine at Monash University, Melbourne; and an Adjunct Professor at
Johns Hopkins University in Baltimore, Maryland, USA. He is a judge of the Supreme Court in
Nauru. He is the Editor of the Journal of Law and Medicine and the founding Editor of Psychiatry,
Psychology and Law. He has been a Commissioner at the Victorian Law Reform Commission.

xvi
 Contributors

Amongst his publications are the following: Pandemics, Public Health Emergencies and Government
Powers (edited with Belinda Bennett) (Federation Press 2021). Expert Evidence: Law, Practice and
Procedure (6th edn Thomson Reuters 2019); Expert Evidence and Criminal Jury Trials (with Jane
Goodman-Delahunty, Jacqueline Horan and Blake McKimmie) (Oxford University Press 2016);
Scholarly Misconduct (Oxford University Press 2016); Tensions and Traumas in Health Law (edited
with Kerry Petersen) (Federation Press 2016); Coercive Care: Rights and the Law (edited with
Bernadette McSherry) (Routledge 2013).

Jonathan Herring is the DM Wolfe-Clarendon Fellow in Law at Exeter College, UK; and a
Vice Dean and Professor of Law at the University of Oxford, UK. He has written extensively in
the areas of medical law and ethics, care law, elder law, family law, criminal law, and law and vul-
nerability. Some of his publications include Medical Law and Ethics (8th edn Oxford University
Press 2020);Law and the Relational Self (Cambridge University Press 2019);Vulnerability, Childhood
and Law (Springer 2018); Vulnerable Adults and the Law (Oxford University Press 2016); Altruism,
Welfare and Law (with Charles Foster) (Springer 2015); Domestic Abuse and Human Rights
(Intersentia 2020); Criminal Law (10th edn Oxford University Press 2020); and Older People in
Law and Society (Oxford University Press 2009).

Helen Hughes is the Chief Executive of Patient Safety Learning, a charity and independent
voice for improving patient safety. Helen’s passion for improved patient safety is informed by
personal family insight into the impact of unsafe care and the ineffectiveness of organisational
responses to learn from error. Helen is an experienced leader in organisational effectiveness
and transformational change. She has held leadership roles in healthcare in the UK and the
World Health Organisation, the National Patient Safety Agency, Equality and Human Rights
Commission, Parliamentary Health Services Ombudsman, and the Charity Commission.

Lara Khoury, AdE (Quebec Bar), LLB (Sherb), BCL (Oxon), DPhil (Oxon), is an Associate
Professor at the Faculty of Law, Co-Director of the McGill Research Group on Health and Law,
Associate Member of the Institute for Health and Social Policy and of the Biomedical Ethics
Unit, all at McGill University, Montreal, Quebec. She is a permanent member of the Paul-André
Crépeau Center for Private and Comparative Law.

Stephen King is a Partner at Mills & Reeve LLP solicitors, Norwich, UK. King is a dis-
pute resolution lawyer/advocate. He acts on insurance coverage disputes/malpractice defence/
healthcare-related risks. Clients include insurers, government bodies, healthcare professionals,
and corporates involved in healthcare provision including telemedicine and diagnostic services.
Insurer clients include professional indemnity, accident and health, critical illness, regulatory, and
management liability risks.

Edward Lui is a BCL Candidate at Magdalen College, University of Oxford, UK. His research
interests lie mainly in medical law and public law.

Jean V McHale is a Professor of Health Care Law at the University of Birmingham, UK.
She is Director of the Centre for Health Law, Science and Policy. Her recent books include
The Regulation of Cosmetic Procedures: Legal, Ethical and Practical Challenges (with Melanie
Latham) (Routledge 2020); European Health Law:Themes and Implications (with Tamara Hervey)
(Cambridge University Press 2015); Routledge Handbook of Complementary and Alternative
Medicines: Perspectives from Social Science and Law (edited with Nicola Gale) (Routledge 2015);
and Principles of Medical Law (edited with Judy Laing) (4th edn Oxford University Press 2017).

xvii
 Contributors

Carsten Momsen heads the Department of Comparative Criminal Law, Criminal Procedure
Law, White Collar/ Economic and Environmental Criminal Law at Freie Universität Berlin.
Since 2019, he is the ongoing visiting scholar at John Jay College of Criminal Justice (City
University of New York), New York, USA. Among other positions, in 2012 he was Visiting
Professor at Symbiosis University in Pune, India, and at the University of Toronto, Canada,
in 2016 and 2019. He holds a position as scholar in residence at New York Law School, New
York, USA. Momsen is a founding member and PI of the Berlin-based Einstein Center Digital
Future, and a permanent member of the Program Committee of the international conference
series SADFE – Systematic Approaches on Digital Forensic Engineering. In addition to various
compliance issues, current projects are focused on corporate responsibility for human rights
violations, comparative whistle-blower protection, and assessment of wrongful convictions and
miscarried investigations. Research includes the related data protection issues, digital evidence,
and digital forensics. Of interest are discriminatory effects of predictive policing based on the use
of big data and artificial intelligence (AI) in particular and the impact on human rights.

Zahara Nampewo is a Ugandan lawyer, academic, and human rights practitioner teaching at
Makerere University School of Law, Kampala, Uganda. She also heads the Human Rights and
Peace Centre (HURIPEC), a research and advocacy centre of Makerere University. Nampewo’s
areas of interest and expertise include human rights, health justice, gender, and transitional jus-
tice. She is Managing Editor of the East African Journal on Peace and Human Rights, an interna-
tional, peer-reviewed, bi-annual scholarly publication of HURIPEC. Nampewo was winner of
the 5th Women in Law Award for ‘Female Lawyer Academic,’ awarded in 2019 by the Uganda
Law Society on 7 March 2019.

Naomi N Njuguna is a Lecturer at the University of Nairobi, Kenya, and is also an Advocate
of the High Court of Kenya. Her areas of specialisation and research are in Labour Law, Medical
Law and Ethics and Health Law and Policy and has engaged in several research projects and
written scholarly papers in these areas. She has keen interest in health rights, patient safety and
occupational safety and health of healthcare workers in low- and middle-income countries.

Clayton Ó Néill, LLB (Ulster), LLM (Dub), BCL (Oxon), PhD (Durham), FHEA, is a Lecturer
in Law at Queen’s University Belfast, Northern Ireland. He has published a monograph, titled
Religion, Medicine and the Law (Routledge 2018). He has also edited a book called Global Patient
Safety: Law, Policy and Practice (Routledge 2018) (with John Tingle and Morgan Shimwell). He
has a particular interest in medical law and ethics, and the application of human rights. He is also
concerned with the interconnection between the manifestation of religious belief and the exer-
cise of autonomy. He has published related material in journals such as Medical Law International,
Medical Law Review, and European Journal of Health Law.

Cheluchi Onyemelukwe is an Associate Professor in Health Law and Policy at Babcock

School of Law and Security Studies at Babcock University in Nigeria. She is also a partner
at Health Ethics and Law Consulting in Nigeria. She has written a monograph titled Health
Research Governance in Africa: Law, Ethics and Regulation (Routledge 2018).

Barbara A Reich is a Professor of Law at Western New England University School of Law,
Springfield, Massachusetts, USA. She teaches torts and a variety of medical law subjects, includ-
ing biomedical ethics and end-of-life law. She received her JD from Harvard Law School,
Cambridge, Massachusetts, USA. She then spent two years in private practice in Washington,

xviii
 Contributors

DC, specializing in pharmaceutical and medical device law. Her research interests include legal
and ethical issues in end-of-life decision-making, comparative end-of-life law, paediatric health
issues; racial disparities in the delivery of health care, clinical research ethics, and the impact of
politics in science and medicine.

Mathis Schwarze is a PhD candidate and Research Assistant at Freie Universität Berlin,
Germany. He holds a law degree from Freie Universität Berlin and an MSc in Criminology and
Criminal Justice from the University of Oxford, UK. His research interests include criminal law,
criminology, and sentencing.

Santa Slokenberga is a Senior Lecturer in Administrative Law at Uppsala University, Sweden.

Her research focuses on regulating the standards of medical care and scientific uncertainty in
paediatric medicine. Her other research interests include the governance of new and emerging
genomic technologies, scientific research regulation, and public health challenges to democratic
values and structures.

Elizabeth M Speakman is a Research Fellow at the School of Health and Social Care,
Edinburgh Napier University, Scotland.

John Tingle is a Lecturer in Law at the University of Birmingham, UK, and a qualified
Barrister. His research interests are in the areas of global and English patient safety, nursing law,
and universal health coverage. He is a Visiting Professor of Law at Loyola University School of
Law, Chicago, Illinois, USA. His publications include Global Patient Safety: Law, Policy and Practice
(co-edited with Clayton Ó Néill and Morgan Shimwell); Law and Nursing (with Jean McHale);
and Nursing Law and Ethics (co-edited with Alan Cribb).

Jesse Wall is a Senior Lecturer at the University of Auckland, New Zealand. His publications
include Being and Owning:The Body, Bodily Material, and the Law (Oxford University Press 2015);
Landmark Cases in Medical Law (edited with Jonathan Herring) (Hart 2015); and Law, Ethics,
and Medicine: Essays in Honour of Peter Skegg (edited with Mark Henaghan) (Thomson Reuters
2016). He has also published articles in leading journals, such as the Oxford Journal of Legal Studies
and the Journal of Medical Ethics.

xix
 PART A

International human rights and

the right to health
 1
AN INTRODUCTION TO HEALTH
RIGHTS AS THEY APPLY IN
A GLOBAL LANDSCAPE
Clayton Ó Néill

Introduction
We are born.We live.We die.There will be two dates on our gravestone – the date of our birth
and the date of our death – and a hyphen will interlink the two.That hyphen encompasses our
lived lives, all the joys, sorrows, triumphs, disappointments, high days and holidays, low days and
sadnesses that we have experienced. Most of us live lives according to some form of precepts,
some unwritten rules that have been laid out by our parents, our church, our own moral com-
pass.Within those precepts we find factors that contribute to the wellness of our lives and that
of the community in which we live: responsibilities and rights. In order to live mature and well-
balanced lives, we assume responsibility for ourselves and, in some cases, for others and for the
planet that nourishes and sustains us.And, then, there are the rights that we possess, and it is these
rights, as they pertain to health, that form the substance of this book.

Rights: phainomena and endoxa

The possession of rights has long been a hallmark of citizenship. From the time of Aristotle,
Plato, and Socrates, there has been a shift to recognising that the state assumes responsibility
for the protection of some of the rights of its citizens. Human rights, as we know them, have
evolved from the earliest formulation of the Imago Dei. They have been the subject of con-
sideration in centuries-long cogitation on the links between natural law and individual rights.
According to Jonathan Crowe, ‘[n]atural law theories, whether they are understood in a broad
or narrow sense, rely on the idea that human life is directed towards certain intrinsic goods.’1
Howard P Kainz states that ‘[t]he task of natural-law theory can be interpreted as arguing that
there do exist some supervening meta-laws, or as working towards a clarification of such laws, or
as the specification of just what the laws are.’2 The interconnection between societal forces and
individual consciousness has seen the evolution of human rights through the eyes of Locke and
to the conceptualisation of rights as being linked to life, liberty, and property, as reflected in the

1 Jonathan Crowe, Natural Law and the Nature of Law (Cambridge University Press 2019).
2 Howard P Kainz, Natural Law:An Introduction and Re-Examination (Open Court 2004).

3
 Clayton Ó Néill

slogan of the French revolution liberté, égalité, fraternité. Many of the French revolutionaries were
also motivated by Rousseau whose imprint is felt on the language of rights.
Most ethical persuasions, from the most rational to the most liberal, from those that prioritise
autonomy to those that value community relationships above and beyond individual determina-
tion, assume that citizens have rights and that these rights are universal, and can be universally
applied and can be universally assertible.We can accept the idea that having a right means having
a claim that has a legal or moral justification that allows an individual to possess something, to
obtain something, or to act in a particular way that helps to assert the identity of the individual.
A right to health that exists within and of itself is almost powerless unless it corresponds to other
rights that help and promote the proper, fair, and equitable application of a right to health.This
is Rousseau’s social contract working in a health landscape; this is Locke’s classical liberalism
striving for equality, choice, and equal division of resources.3 This is Aristotle’s phainomena, the
appearance of the right, and his endoxa, the credible opinions that surround the appearance of
those rights.4 The philosophical problem that is explored in this book centres on the problem
that is created when there is a lack of translation from the phainomena of rights to the actualisa-
tion of rights.Aristotle describes puzzles such as this as aporiai.5 This book will seek to solve the
aporiai that are created when this mismatch exists. In so doing, this Handbook will show how
the creation of a universal right to health that is universally applied involves reaching Aristotle’s
eudaimonia – the flourishing that applies to a life that is lived well and happily.6
The preamble to the Universal Declaration of Human Rights (UDHR) recognises ‘the
inherent dignity and of the equal and inalienable rights of all members of the human family is
the foundation of freedom, justice and peace in the world’ and ‘it is essential, if man is not to
be compelled to have recourse, as a last resort, to rebellion against tyranny and oppression, that
human rights should be protected by the rule of law.’7 Thus, the UN General Assembly set out
the UDHR as

a common standard of achievement for all peoples and all nations, to the end that every
individual and every organ of society, keeping this Declaration constantly in mind,
shall strive by teaching and education to promote respect for these rights and free-
doms and by progressive measures, national and international, to secure their universal
and effective recognition and observance, both among the peoples of Member States
themselves and among the peoples of territories under their jurisdiction.8

In the international context, rights are provided for under international treaties, such as the
UDHR and the International Covenant on Economic, Social and Cultural Rights (ICESCR),
as well as the Convention on the Elimination of All Forms of Discrimination against Women
(CEDAW), inter alia. At a European level, the main mechanism for the protection of human
rights is the European Convention on Human Rights (ECHR).The right to health can be seen
both overtly and covertly. For example, the specific right to health is found within Article 12

3 Jean-Jacques Rousseau, The Social Contract (Wordsworth Classics of World Literature 1998, translated by HJ Tozer).
See, for example,Vere Chappell (ed), The Cambridge Companion to Locke (Cambridge University Press 1994).
4 Jonathan Barnes (ed), The Complete Works of Aristotle: The Revised Oxford Translation (vols 1 and 2) (Princeton
University Press 1984).
5 See ‘Aristotle’, Stanford Encyclopaedia of Philosophy (25 September 2008, revised 29 July 2015).
6 ibid.
7 Preamble, UDHR www.un.org/en/universal-declaration-human-rights/ accessed 30 June 2020.
8 ibid.

4
 An introduction to health rights

ICESCR and Article 25 UDHR, but the right to health does not exist in a vacuum. It is con-
nected to other rights, such as the right to education and the right to housing.There are differ-
ent elements to the right to health.The Office of the United Nations High Commissioner for
Human Rights (OHCHR)/World Health Organization (WHO) in Fact Sheet 31 state that the
right to health is ‘inclusive’ and that it contains both ‘freedoms’ and ‘entitlements.’9 In relation
to the inclusivity of the right, they link the right to health to availability of healthcare and crea-
tion of hospitals as well as other factors, such as safe water, nutrition, housing, safe environments,
and gender equality.10 This approach is also taken by the Committee on Economic, Social and
Cultural Rights, which is responsible for supervising the rights under the ICESCR. In relation
to freedoms, in Fact Sheet 31, the OHCHR/WHO refers to freedoms, such as freedom from
medical treatment that is non-consensual and freedom from torture, or treatment that is degrad-
ing or inhuman.11 In the context of entitlements, focus is placed on ensuring the right to equal
opportunities in order to ensure that every person can have access to the best possible level of
health, a right to the ‘prevention, treatment and control of diseases,’ availability of necessary
drugs, and appropriate reproductive health, amongst others.12 Fact Sheet 31 also states that there
is no place for discrimination in the facilitation of health services and goods, and these services
‘must be available, accessible, acceptable and of good quality.’13
Fact Sheet 31 refers to misconceptions pertaining to the right to health. It states that a dif-
ference exists between the right to health and the right to be healthy.This right is not simply
‘a programmatic goal to be attained in the long term’ and a nation’s financial demands do not
release it from its obligations to strive for the realisation of the right to health.14 It is clearly
recognised that rights that protect people from discrimination (e.g. International Covenant
on the Elimination of All Forms of Racial Discrimination), protect women (CEDAW, Articles
10(2) and 12), protect children (Article 25, Convention on the Rights of the Child), and protect
people with disabilities (Convention on the Rights of Persons with Disabilities) are also relevant.
This, therefore, seems to be a simple, non-problematic issue; health rights exist and are his-
torically and philosophically bound to human rights. Significant protections are in place to sup-
port the manifestation of these rights.Why do we need to consider the issue of global health at
all? There is, in my view, a gap between the right to health as it exists and the way it is applied
or not applied at a global level. The mismatch between legal underpinning and practical real-
ity forms the cornerstone of much of the debate in this Handbook.The need to translate the
rights that are described and justified under international treaties and the failure of states and
individuals to assume responsibility for the practical application of these rights lies at the centre
of the anomalies that exist in different jurisdictions. Health-related rights and health rights have
a symbiotic relationship. It is difficult to achieve physical and mental wellness through access
to appropriate healthcare that is mandated by a right to health without also being able to draw
upon the well of rights that supports the provision of education, a home, safe water, sanitation
and work.That ensures that freedoms exist within a safe and non-discriminatory environment.
This Handbook will meander through the intersection of these rights and lay bare some of the

9 The Office of the United Nations High Commissioner for Human Rights (OHCHR)/World Health
Organization, ‘The Right to Health: Fact Sheet No. 31’ 3. www.ohchr.org/Documents/Publications/Factshee
t31.pdf accessed 23 October 2020.
10 ibid 3–4.
11 ibid 4.
12 ibid 3.
13 ibid 4.
14 ibid 5.

5
 Clayton Ó Néill

inequalities that prevent the full manifestation of a right to health.The final chapter will set forth
a pathway towards the global achievement of this goal.

A local impact and a global reach?

The human world is one that is both local and global. It is local in the sense that individuals live
their lives in a small community and, no matter how far the travel and how wide the repertoire
of geographical adventures, it is in the nature of the human spirit to find ease and sustenance at
home, in one location, in a place where there is love, human contact, and human relationships.
The interactions created and nurtured by people are primarily local. That local experience is,
however, intrinsically linked to the global connections that are made and to the global context
that is created.This book has a particularly global reach in so far as it attempts to show that the
issue of health rights may be experienced differently in different contexts and jurisdictions, but
the same rights remain irrespective of their iterations and their apparel.
What happens at a local level is, thus, influenced by a global identity and by global happen-
ings.This pertains, particularly, to the context of health. Part of the remit of this book is to look
at health rights as they exist within different jurisdictions and to try to draw parallels within these
jurisdictions on a thematic basis. But, aligned to health rights is the concept that we also have
parallel responsibilities. In the book, we will look at the idea that, while health rights exist within
themselves and of themselves, unless they are aligned with a real acceptance of the responsibilities
that belong to both individuals and governments, then those rights, in fact, cannot be vivified.
The focus of the book is, thus, on the idea that there are global health rights, but problems
exist in both local and global application of these rights. In order to ensure that we had a wide
global reach, the authors of this book extend from Ireland to England to Australia to Hong
Kong to India to America and other places in between. It was impossible to ensure that every
jurisdiction was accounted for, but we tried to ensure that there was a balance between the vari-
ous continents and a balance, also, between the thematic consideration of some of the areas that
are addressed within the book.We aim to highlight what is happening in different jurisdictions,
but this is not just a textbook telling the reader ‘this is the health rights’ situation in Uganda
or Kenya or in the United Kingdom. Instead, the book attempts to analyse, to critique, and to
criticise positions that have been taken by respective governments and respective legal systems in
terms of health rights.We have tried to link an analysis of health rights in geographical areas, as
they apply to topical issues, to the core question of whether the right to health is applied appro-
priately within the global landscape.The analysis of specific areas pertaining to health rights is
aligned to themes that transcend particular jurisdictional borders.

Scope of the Handbook: aporiai

The book attempts to answer one key question: Does a universal right to health exist in practice? In
posing that question there is almost a presumption that that one question is the finite one but, of
course, the idea of health rights is much more complex than that.The answers to one question
cannot, in any way, begin to encompass the complexities and the pluralities that exist within this
whole area, but they provide the conduit through which several sub-questions can be addressed.
Underneath that core question, there are a number of allied sub-questions, which could include
things like the following:

• If a right exists within one country, does that right automatically exist within other coun-
tries or should it exist?

6
 An introduction to health rights

• Are there other factors that would preclude the existence of the operationalising of that
right on a cross-jurisdictional basis?
• What practical steps can be taken to ensure that there is a marriage of two minds between
health rights and health-related rights?
• How are health rights balanced with other rights and responsibilities at both the national
and transnational level?
• What is the role of the individual in the manifestation of health rights?

These questions and others will be explored throughout the practical examples described and
analysed in Part B, and conclusions in respect of them will be drawn in Part C.

Structure
The book is divided into three parts. In Part A we consider the legal backdrop to the right to
health, Part B looks at what happens to health rights within different jurisdictions, and Part C
provides answers to the core question relating to the universality of health rights.

Part A: International human rights and the right to health

Part A sets the scene. It delineates the specific rights that are currently ascribed to health from
within the context of international human rights law. As such, it provides a link between the
relevant international treaties and the specific right to health. In Chapters 2, 3, and 4, we will set
out the main rights that protect the right to health, particularly through the lens of the UDHR
and the ICESCR.The primary focus of Charles Foster’s and Jonathan Herring’s chapters is on
the connection between the UDHR and the right to health. Clayton Ó Néill analyses the role
of the ICESCR in relation to the right to health and links this discussion to health emergen-
cies, such as the current COVID-19 pandemic, and the wider conceptual issues of justice and
globalisation.Thana C de Campos-Rudinsky considers global health rights in the context of the
Inter-American Court of Human Rights.
This part of the book describes the protections that are in place to support health rights,
and connections are drawn to concepts such as justice, dignity, and globalisation.The emerging
urgency of health rights in the context of global emergencies is scrutinised.Thus, Part A involves
a broad brushstroke approach to health rights. It provides the legal backdrop for the deeper con-
sideration of how these health rights are applied or not applied in specific jurisdictions, which
is explored in Part B.

Part B: Health rights across the temporal stages in specifc countries

Part B considers the chronological continuum of pertinent issues pertaining to health at differ-
ent stages of life: (i) the beginning of life, (ii) the middle of life, and (iii) the end of life.

Beginning of life
The beginning of life section considers issues such as abortion and assisted reproduction. Zahara
Nampeow discusses assisted reproductive technologies in Uganda as they pertain to law and
practice. Clayton Ó Néill explores abortion and conscientious objection in Northern Ireland.
Santa Slokenberga brings to life the interplay between a child’s right to health and bodily integ-
rity/paediatric decision-making in Sweden.

7
 Clayton Ó Néill

Middle of life
The middle of life section covers a wide range of issues, ranging from the cost of healthcare, the
regulation of human tissue, children’s rights in health contexts, and the issue of patient safe and
quality of care. Edward Lui writes about the health rights issue in Hong Kong. Sushant Chandra
considers the vexed question of dignity in the adjudication of health rights in India. Cheluchi
Onyemelukwe considers the arguments surrounding universal health coverage and the right to
health in Nigeria. Naomi N Njuguna discusses the relationship between health governance and
patient safety in Kenya. Stephen King, John Tingle, and Helen Hughes address patient safety
from different perspectives. Jean V McHale and Elizabeth M Speakman provide an analysis of
the mythically ephemeral, but real, concept of ‘visitors’ and charging for NHS services. Lara
Khoury positions her discourse on public reporting, transparency, and patient autonomy in
Quebec.

End of life
The end of life section predominately focuses on euthanasia and assisted dying.These chapters
all share common themes: the right to self-determination and bodily integrity, as well as the
concept of respect for the dignity of human beings. Jesse Wall analyses the issue of human tis-
sue, human rights, and humanity. Carsten Momsen and Mathis Schwarze refer to the German
perspective on autonomy and the right to (end one’s) life. Ian Freckelton contextualises health
rights from the perspective of end-of-life issues in Australia and New Zealand. Barbara A Reich
considers the issue of medical aid in dying in the United States and Canada

Part C: The application of a universal right to health in practice

In Part C, Clayton Ó Néill and Charles Foster join the individual threads that have been woven
throughout Part B and bring us towards a summary/synthesis where the actual question of ‘Does
a universal right to health apply in practice in a global landscape?’ is addressed and answered.
Part C analyses the intersection between rights and responsibilities, and positions rights and
responsibilities as co-dependent within the area of health rights and related rights. It answers the
question as to whether a right to health is applied practically throughout different jurisdictions
and offers some solutions towards a more enduring pathway to the realisation of this right.
Thus, the spectrum of life is contained within the book – beginning, middle, and end – and
many of the infinite commas and apostrophes that exist within the balance of life.

Conclusion: eudaimonia
This Handbook does not sit on a philosophical fence. It is unapologetically partisan in the sense
that the contributors, in almost all instances, advocate for equity in terms of sharing resources
and knowledge.They also support proportionality in the use of medical regulations and in the
procedures that govern patient safety.They recommend investing the attributes of liberté, égalité,
fraternité in the global application of a right to health. Health rights, as a social justice issue, is the
primary refrain of the lyrics of the book.
Let us return for one minute to the hyphen that encompasses our lives – for many people,
their life will be whole, hearty, and healthy, but, for others, that life may be consumed by ill-
health and by the necessity to spend considerable amounts of time in hospitals and in healthcare
contexts.The book points to anomalies, injustices, and disproportionate delivery of healthcare

8
 An introduction to health rights

within particular countries, and it juxtaposes these provisions with a right to health that we con-
sider to be universal.The journey along which we hope you will travel with us is one that will
take us through many different jurisdictions, and will address different health needs and different
health rights and responsibilities. But, in the end, as the journey comes to a conclusion, we hope
that we will be able to say, ‘Yes, there is a right to health.Yes, it is universal.Yes, it has universal
applicability.’ So, come with us and share the journey.

References
‘Aristotle’, Stanford Encyclopedia of Philosophy (25 September 2008, revised 29 July 2015).
Chappell,Vere (ed), The Cambridge Companion to Locke (Cambridge University Press 1994).
Crowe, Jonathan, Natural Law and the Nature of Law (Cambridge University Press 2019).
Jonathan, Barnes (ed), The Complete Works of Aristotle: The Revised Oxford Translation (1 and 2) (Princeton
University Press 1984).
Kainz, Howard P, Natural Law:An Introduction and Re-Examination (Open Court 2004).
Preamble,‘UDHR’ www.un.org/en/universal-declaration-human-rights/ accessed 30 June 2020.
Rousseau, Jean-Jacques, The Social Contract (Wordsworth Classics of World Literature 1998, translated by
HJ Tozer).
The Office of the United Nations High Commissioner for Human Rights (OHCHR)/World Health
Organization, ‘The Right to Health: Fact Sheet No. 31’ 3 www.ohchr.org/Documents/Publications/
Factsheet31.pdf accessed 23 October 2020.

9
 2
UNIVERSAL DECLARATION
OF HUMAN RIGHTS, PART 1
Articles 1, 2, 3, 5, and 6

Charles Foster

Introduction
The Universal Declaration of Human Rights (1948) (UDHR) has several effects. It expresses
the overwhelming international consensus on how human beings should be treated, and accord-
ingly helps to declare, enshrine, and perpetuate an ethos. That ethos is itself powerful: it acts as
an inhibition to human violations and a spur to better treatment. It seeps, often unnoticed, into
many political, legal, and other deliberations.
This chapter, though, is concerned with the more formal effects of the UDHR.There is a
debate, which is outside the scope of this book, about whether or not the UDHR forms part
of customary international law. But it is not disputed that the UDHR underpins (by whatever
legal mechanism) a number of international instruments which are binding (to varying degrees
and by varying mechanisms) on states that ratify them. Instruments such as the International
Covenant on Civil and Political Rights (1966) (ICCPR); the International Covenant on
Economic, Social and Cultural Rights (1966) (ICESCR); the UN Convention on Rights of the
Child (1989) (CRC); the Convention on the Elimination of All Forms of Racial Discrimination
(CEAFRD); the Convention on the Elimination of All Forms of Discrimination Against
Women (CAFDAW); the Convention on the Rights of Persons with Disabilities (CRPD); the
Convention against Torture (CAT); and many others all give real force to the principles of the
UDHR.This chapter looks particularly at the embodiment in the ICCPR, the ICESCR, and
the CRC of those UDHR principles that relate to human health. It does not detail the proce-
dures for enforcement or their efficacy.
Many of the provisions of the UDHR overlap significantly with those of other instruments
of rather different genealogy. The obvious example is the European Convention on Human
Rights (ECHR). It is tempting to use Strasbourg jurisprudence as a lens through which to
view the UDHR and its derivative instruments, but one should be careful about this – notably
because the doctrine of the margin of appreciation applied when construing the demands of
the ECHR has a legal life of its own, and while the UDHR-derived instruments are interpreted
with a sensitivity to the national context that is analogous in some ways to the way that the
margin of appreciation operates, the analogy is not perfect.

11
 Charles Foster

Article 1
Article 1: All human beings are born free and equal in dignity and rights. They are
endowed with reason and conscience and should act towards one another in a spirit of
brotherhood.

This most sonorous of the UDHR’s declarations is, historically, a creature of the notion of the
Imago Dei. If all human beings are made in the image of God, there are two broad consequences.
First, since God deserves to be honoured, creatures bearing his stamp deserve to be respected.
And second, since all humans bear this stamp and share the same divine origins, no one is enti-
tled to more or less respect than any other. The Imago Dei is the most profoundly egalitarian
declaration.
The ‘brotherhood’ spoken of in Article 1 is not, though, the very first biblical example of
brotherhood (the first brothers were Cain and Abel, and Cain murdered Abel): it is instead an
aspirational extrapolation from the asserted fact of the Imago Dei: if humans really are those
sorts of creatures, one should behave to them like truly functional brothers.
If the article were taken seriously, there would be nothing else for the UDHR or its legal
offspring to do. Its other articles, and those of (for instance) the ICCPR and the ICESCR can
be regarded as exposition of Article 1.
As elsewhere in comparable international declarations, there is no attempt to define its key
ideas – such as dignity.The UDHR was signed in the immediate aftermath of the Second World
War: its context was Auschwitz. Whatever dignity was, it was clear that it had been violated there.
Whatever the source of rights, they had not been respected. It was no time for jurisprudential
niceties.The broad outline of the lessons learned was clear: it had to be etched in stone before
memories faded.The detail could be added later.
In the article, the birth of a human marks a new start: a new story, to be told according to the
principles of the Declaration. Children are distinct from their parents.1 A child born to a (rightly)
imprisoned mother is free.The Declaration gets rather carried away with its own rhetoric. It is
not true, for instance, that an anencephalic child (which is certainly a human being), is ‘endowed
with reason,’ or, presumably, conscience. And one must be careful about concluding from the
article that humans possess dignity and rights because they have reason and/or conscience.That
would exclude from the protection of the UDHR many of the humans who most needed that
protection: the very young, the unconscious, and the otherwise mentally uncapacious.
The spirit of Article 1, then, infuses and informs all the other articles of the UDHR.
In the context of health, because ‘dignity’ and ‘rights’ are not self-defining, and because it is
not self-evident what ‘dignity’ and ‘rights’ entail for health, the real work of Article 1 is delegated
to other UDHR articles and to other instruments.

Article 2
Article 2: Everyone is entitled to all the rights and freedoms set forth in this Declaration,
without distinction of any kind, such as race, colour, sex, language, religion, political or
other opinion, national of social origin, property, birth, or other status. Furthermore, no

1 CRC Article 3(1), for instance, provides that ‘in all actions concerning children, whether undertaken by public or
private social welfare institutions, courts of law, administrative authorities or legislative bodies, the best interests
of the child shall be a primary consideration.’The best interests of the child may, but may not, coincide with the
interests of the parents or the views of the parents about how the child should be treated.

12
 UDHR Articles 1, 2, 3, 5, and 6

distinction shall be made on the basis of the political, jurisdictional or international status
of the country or territory to which a person belongs, whether it be independent, trust,
non-self-governing or under any other limitation or sovereignty.

This is clear enough: it is a corollary of the egalitarian component of Article 1.Whatever health
rights and freedoms human beings should have, must be had by all. Its words are repeated many
times elsewhere.2 In the CRC, for instance,Article 2(1) provides that

States Parties shall respect and ensure the rights set forth in the present Convention to
each child within their jurisdiction without discrimination of any kind, irrespective of the
child’s or his or her parent’s or legal guardian’s race, colour, sex, language, religion, political
or other opinion, national, ethnic or social origin, property, disability, birth or other status.

The circumstances in which discrimination in a healthcare context might be invoked are infi-
nitely various. Under CRPD Article 5, for instance, an applicant suffered a number of complex
health issues following a discectomy. She sought a number of types of treatment and rehabilita-
tion, and contended that the United Kingdom discriminated against her in a number of ways
in failing to provide them, and that this discrimination was, inter alia, a result of her disability.3

Article 3
Article 3: Everyone has the right to life, liberty and security of person.

Introduction
The fullest expression of Article 3, insofar as it relates to the right to life, is contained in ICCPR
Article 6.4 Much of Article 6 relates to the death penalty (which is not considered in this chap-

2 See too ICCPR Articles 2(1), 14, 24, 25, and 26; ICESCR Article 2.2; CERD Articles 1, 2, 4, and 5; CEDAW
Articles 2, 3, 4, and 15; CRPD Articles 3, 4, 5, and 12. In the CAT, if treatment is discriminatory, that is a factor
in it being ‘degrading.’
3 CRPD:Application 27/2015.The case was framed in a number of ways:Articles 5 and 25 were particularly impor-
tant.The application was ruled inadmissible.
4 The full text of Article 6 of the ICCPR reads:

1. Every human being has the inherent right to life.This right shall be protected by law. No one shall be
arbitrarily deprived of his life.
2. In countries which have not abolished the death penalty, sentence of death may be imposed only for the
most serious crimes in accordance with the law in force at the time of the commission of the crime and
not contrary to the provisions of the present Covenant and to the Convention on the Prevention and
Punishment of the Crime of Genocide.This penalty can only be carried out pursuant to a final judge-
ment rendered by a competent court.
3. When deprivation of life constitutes the crime of genocide, it is understood that nothing in this article shall
authorize any State Party to the present Covenant to derogate in any way from any obligation assumed
under the provisions of the Convention on the Prevention and Punishment of the Crime of Genocide.
4. Anyone sentenced to death shall have the right to seek pardon or commutation of the sentence.Amnesty,
pardon or commutation of the sentence of death may be granted in all cases.
5. Sentence of death shall not be imposed for crimes committed by persons below eighteen years of age
and shall not be carried out on pregnant women.
6. Nothing in this article shall be invoked to delay or to prevent the abolition of capital punishment by any
State Party to the present Covenant.

13
 Charles Foster

ter) but Article 6(1) is of more general application. It provides: ‘1. Every human being has the
inherent right to life.This right shall be protected by law. No one shall be arbitrarily deprived
of his life.’
The CRC has a corresponding provision,5 as does the CRPD6 and the African Charter on
Human and Peoples’ Rights.7
The most authoritative statement of the meaning of the right to life provisions of ICCPR
Article 6, and thus of the right to life provisions of UDHR Article 3, is in a General Comment
by the UN Human Rights Committee.8 ‘Liberty and security of person’ under ICCPR Article
6 has its own General Comment.9

An absolute right to life?

The comment explains that

The right to life is the supreme right from which no derogation is permitted, even in
situations of armed conflict and other public emergencies that threaten the life of the
nation. The right to life has crucial importance both for individuals and for society
as a whole. It is most precious for its own sake as a right that inheres in every human
being, but it also constitutes a fundamental right, the effective protection of which is
the prerequisite for the enjoyment of all other human rights and the content of which
can be informed by other human rights.10

The observation about the right to life being a ‘prerequisite’ to the enjoyment of other rights
might sound like a statement of the biologically obvious: the dead do not (or we do not know
that they do) exercise (for instance) a right to self-determination.Yet in other legal domains (and
notably under the ECHR) many debates are framed as competitions between the right to life
and other rights.We return to this issue in the context of assisted suicide.
Despite this start, the comment soon makes it clear that the right is not absolute. It is not
just a right to ‘be free from acts and omissions that are intended to be or may be expected to
cause their unnatural or premature death,’ but also (since the right ‘should not be interpreted
narrowly’) a right ‘to enjoy life with dignity.’11 It is this wider construction, perhaps ironically,
that dilutes the absolute nature of the right.
This is made clear later in the comment:‘Although it inheres in every human being, the right
to life is not absolute.’12 The right is repeatedly described as a right not to be arbitrarily deprived
of one’s life.13 This formulation does not sit happily with the way that the right is explained
elsewhere in the comment where, for instance, the right is said to concern ‘the entitlement of

5 CRC Article 6(1):‘Every human being has the inherent right to life.This right shall be protected by law. No one
shall be arbitrarily deprived of his life.’
6 CRPD Article 10:‘States Parties reaffirm that every human being has the inherent right to life and shall take all
necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others.’
7 Article 4:‘Human beings are inviolable. Every human being shall be entitled to respect for his life and the integ-
rity of his person. No one may be arbitrarily deprived of this right.’
8 GC 36 (CCPR/C/GC/36) 30 October 2018.
9 GC 35 (CCPR/C/GC/35) (2014).
10 GC 36 1(2).
11 GC 36 1(3).
12 GC 36 II(10).
13 See GC 36 1(4), 1(7), II(10).

14
 UDHR Articles 1, 2, 3, 5, and 6

individuals to be free from acts or omissions that are intended to or may be expected to cause
their unnatural or premature death.’14 Intentional deaths may very well be frighteningly non-
arbitrary.The existence of a well-drafted set of criteria setting out the circumstances in which
a state might consider that deaths are justified will mean that deaths that meet the criteria are
non-arbitrary.
The General Comment deals unsatisfactorily with the question of what amounts to arbitrary
deprivation of life. Such deprivation will be ‘as a rule, arbitrary if it is inconsistent with interna-
tional law or domestic law.’15 This is an unhelpful and non-reassuring observation in a document
whose purpose is to enshrine the ethos, if not the letter, of the relevant part of international
humanitarian law.The comment seems not to recognize this worry insofar as international law
is concerned, but it does address it in relation to domestic law.‘The notion of “arbitrariness” is
not to be fully equated with “against the law”’ (it says),‘but must be interpreted more broadly to
include elements of inappropriateness, injustice, lack of predictability and due process of law,16 as
well as elements of reasonableness, necessity and proportionality.’This observation is expounded
primarily in terms of the boundaries of the doctrine of self-defence – the paradigm case, in the
eyes of the authors of the comment, of potentially non-arbitrary deprivation of life.
It is not necessary that a life is actually lost for Article 6 to be violated: the creation of a situ-
ation that could cause a life to be lost will be caught by the article,17 as would the failure to take
the necessary legislative or administrative steps to avoid loss of life or to investigate any relevant
failures. The comment further provides that ‘Deprivation of life involves intentional or other-
wise foreseeable and preventable life-terminating harm or injury, caused by an act or omission.
It goes beyond injury to bodily or mental integrity or a threat thereto.’18

‘Liberty and security of person’

This, the second part of UDHR, finds its expression in Article 9 of ICCPR, which is interpreted
by a lengthy General Comment.19 It is primarily concerned with arrest and detention.The com-
ment does make observations of wider application, however. It states that ‘[s]ecurity of person
concerns freedom from injury to the body and the mind, or bodily and mental integrity’20 and
‘[t]he right to security of person protects individuals against intentional infliction of bodily or
mental injury, regardless of whether the victim is detained or non-detained.’21 The comment
sees Article 9 as supplementing the right to life under ICCPR Article 3:‘The right to personal
security may be considered broader [than that protected by Article 3] to the extent that it also
addresses injuries that are not life-threatening.’22 That said, in the realm of health rights,Article 9
has little to add to the other articles that are considered in more detail in this book.

14 GC 36 1(3).
15 GC 36 II(12).
16 Gorji-Dinka v Cameroon (CCPR/C/83/D/1134/2002), para. 5.1; Van Alphen v Netherlands, communication No.
305/1988, para 5.8.
17 GC 36(1)(7).
18 GC 36(6).
19 GC 35 (16 December 2014).
20 GC 35 1(3).
21 GC 35 1(9).
22 GC 35 VII(55). See too ICCPR Article 10(1), which provides: ‘All persons deprived of their liberty shall be
treated with humanity and with respect for the inherent dignity of the human person.’

15
 Charles Foster

A right to health?
It would have been possible for a general right to health to have been fashioned from Article
6 of ICCPR. In fact, that work was left to Article 12 of ICESCR, which deals with the mat-
ter expressly.23 Article 12 ICESCR is best seen as related to the UDHR via UDHR Article 25,
which is dealt with in the next chapter.

The scope of the concomitant duties

Rights entail duties.We have seen already that there is a right not to be ‘arbitrarily’ deprived of
one’s life.There is, then, a duty on states parties to ‘refrain from engaging in conduct resulting in
arbitrary deprivation of life’ and to ensure

the right to life and exercise due diligence to protect the lives of individuals against
deprivations caused by persons or entities whose conduct is not attributable to the
State.24 The obligation of States parties to respect and ensure the right to life extends
to reasonably foreseeable threats and life-threatening situations that can result in loss
of life. States parties may be in violation of Article 6 even if such threats and situations
do not result in loss of life.25

Article 6(1)’s requirement that the right of life ‘be protected by law’ imposes an obligation to
establish a legal framework to give effect to the right – including laws or other measures to
protect life ‘from all reasonably foreseeable threats.’26 It is not enough for technically satisfactory
laws to be on the statute book: the state must ensure full compliance with all of the relevant
legal provisions. Investigations of alleged breaches of the article must be independent, impartial,
prompt, thorough, effective, credible, and transparent.27

The duty to protect by law the right to life also requires States parties to organize all
State organs and governance structures through which public authority is exercised in

23 Article 12 of ICESCR provides:

1. The States Parties to the present Covenant recognize the right of everyone to the enjoyment of the
highest attainable standard of physical and mental health.
2. The steps to be taken by the States Parties to the present Covenant to achieve the full realization of this
right shall include those necessary for:
(a) The provision for the reduction of the stillbirth-rate and of infant mortality and for the healthy
development of the child;
(b) The improvement of all aspects of environmental and industrial hygiene;
(c) The prevention, treatment and control of epidemic, endemic, occupational and other diseases;
(d) The creation of conditions which would assure to all medical service and medical attention in the
event of sickness.

This article is the subject of its own detailed General Comment: GC 14 (2000).
24 UN Human Rights Committee, General Comment No 31,The nature of the general legal obligation imposed on States
parties to the Covenant (2004), para 8. See also European Court of Human Rights, Osman v United Kingdom (case
No. 87/1997/871/1083), judgment of 28 October 1998, para. 116.
25 GC 36 1(7).
26 GC 36 III(18).
27 See GC 36 III(28).

16
 UDHR Articles 1, 2, 3, 5, and 6

a manner consistent with the need to respect and ensure the right to life,28 including
establishing by law adequate institutions and procedures for preventing deprivation of
life, investigating and prosecuting potential cases of unlawful deprivation of life, meting
out punishment and providing full reparation.29

Individuals with disabilities must have special protection, enabling them to enjoy their right to
life ‘on an equal basis with others.’This must include the provision of reasonable accommoda-
tion when such provision is necessary to ensure the right to life: the comment cites particularly
the need to ensure access to essential facilities and services.30 Individuals deprived by the state of
their liberty are subject to a particularly strenuous duty of care:

assume the responsibility to care for their lives31 and bodily integrity, and they may not
rely on lack of financial resources or other logistical problems to reduce this respon-
sibility.32 The same heightened duty of care attaches to individuals held in private
incarceration facilities operating pursuant to an authorization by the State.The duty to
protect the life of all detained individuals includes providing them with the necessary
medical care and appropriate regular monitoring of their health, shielding them from
inter-prisoner violence,33 preventing suicides and providing reasonable accommoda-
tion for persons with disabilities.34,35

The General Comment frames the duty very widely:

States parties should take appropriate measures to address the general conditions in
society that may give rise to direct threats to life or prevent individuals from enjoying
their right to life with dignity. These general conditions may include high levels of
criminal and gun violence, pervasive traffic and industrial accidents, degradation of the
environment … deprivation of indigenous peoples’ land, territories and resources, the
prevalence of life-threatening diseases, such as AIDS, tuberculosis and malaria, exten-
sive substance abuse, widespread hunger and malnutrition and extreme poverty and
homelessness. The measures called for to address adequate conditions for protecting
the right to life include, where necessary, measures designed to ensure access without
delay by individuals to essential goods and services such as food, water, shelter, health
care,36 electricity and sanitation, and other measures designed to promote and facili-
tate adequate general conditions, such as the bolstering of effective emergency health
services, emergency response operations (including firefighters, ambulance services
and police forces) and social housing programmes. States parties should also develop

28 Inter-American Court of Human Rights, González et al. (“Cotton Field”) v Mexico, judgment of 16 November
2009, para 236.
29 GC 36 III(19).
30 GC 36 III(24).
31 Zhumbaeva v Kyrgyzstan (CCPR/C/102/D/1756/2008), para 8.6; Human Rights Committee, Dermit Barbato v
Uruguay, communication No. 84/1981, para 9.2.
32 Lantsova v Russian Federation (CCPR/C/74/D/763/1997), para 9.2.
33 European Court of Human Rights, Edwards v United Kingdom [2002] ECHR 303 (Application No 46477/99),
para 60.
34 See CRPD,Article 14.
35 GC 36 III(25).
36 Toussaint v Canada (CCPR/C/123/D/2348/2014), para. 11.3. See also CCPR/C/ISR/CO/4, para 12.

17
 Charles Foster

strategic plans for advancing the enjoyment of the right to life, which may comprise
measures to fight the stigmatization associated with disabilities and diseases, including
sexually transmitted diseases, which hamper access to medical care;37 detailed plans to
promote education for non-violence; and campaigns for raising awareness of gender-
based violence38 and harmful practices,39 and for improving access to medical examina-
tions and treatments designed to reduce maternal and infant mortality.40 Furthermore,
States parties should also develop, when necessary, contingency plans and disaster man-
agement plans designed to increase preparedness and address natural and man-made
disasters that may adversely affect enjoyment of the right to life, such as hurricanes,
tsunamis, earthquakes, radioactive accidents and massive cyberattacks resulting in dis-
ruption of essential services.41

Assisted suicide and euthanasia

The classic example of tension between the right to life and autonomy rights relates to assisted
suicide.This tension has been explored particularly in the context of the provisions of the ECHR.
A typical ECHR debate about assisted suicide is framed like this:42 The applicant asserts that
she wants to decide where, when, and in what circumstances she lives, and accordingly where,
when, and in what circumstances she die (a contention under ECHR Article 8(1) – the most
elastic of the ECHR Articles, within which Strasbourg’s conceptions of autonomy and dignity
are accommodated).43 She wants assistance in dying, and contends that unless she gets it, her
Article 8(1) right will be breached. She recognises, typically – and for instance in England –
that there is a national law that says that she cannot get that assistance, and that that law is an
expression of the state’s obligations under Article 2, the right to life under the ECHR. But, she
contends,Article 2 should give way to Article 8.
The respondent typically replies that the Article 2 obligation is absolute – not qualified like
Article 8(1) (Article 8(2) balances the 8(1) rights of the individual against the interests and rights
of all society), and that it should always prevail over Article 8. The state, the respondent says,
must look not only to the interests of the applicant, but to everyone’s interests.Then comes an
empirical claim: If the assisted dying law is relaxed to allow the result sought by the applicant,
vulnerable people’s lives are likely to be lost. People might be pressured into dying because
they are made to feel that they are a burden, for instance. Article 2 therefore insists that the
assisted dying legislation remains unchanged. Article 8(2), notes the respondent, means that the

37 CCPR/C/JAM/CO/3, para 9.
38 CCPR/CO/71/UZB, para 19.
39 Committee on the Elimination of All Forms of Discrimination Against Women and Committee on the Rights of
the Child, Joint General Recommendation No. 31 of the Committee on the Elimination of Discrimination against Women/
general comment No. 18 of the Committee on the Rights of the Child on Harmful Practices (2014), para 56.
40 Human Rights Committee, General Comment No. 6:Article 6 (Right to Life), para 5; CCPR/C/COD/CO/3, para 14.
41 GC 36 III(26).
42 R (Nicklinson) v Ministry of Justice [2014] UKSC 38.
43 ECHR Article 8 provides:

1. Everyone has the right to respect for his private and family life, his home and his correspondence.
2. There shall be no interference by a public authority with the exercise of this right except such as is in
accordance with the law and is necessary in a democratic society in the interests of national security,
public safety or the economic well-being of the country, for the prevention of disorder or crime, for the
protection of health or morals, or for the protection of the rights and freedoms of others.

18
 UDHR Articles 1, 2, 3, 5, and 6

autonomy interests of all society must be taken into account. If the assisted dying law is relaxed,
the autonomy interests of people other than the applicant will be adversely affected.
At least if the empirical claim is made out, the ‘prerequisite’ observation in the General
Comment (see earlier) might seem to decide such a debate, if convened under the ICCPR, for
the respondent, and it would seem to be arguable that even without an empirical claim in rela-
tion to the interests of third parties, Article 6 of the ICCPR, if read consistently with this part
of the comment, is inconsistent with assisted suicide or euthanasia.
But the comment does not stop there. It goes on to dilute this initial statement about the
absolute nature of the article, recognising the need for some accommodation between the right
to life and autonomy rights – at least at the end of life.

While acknowledging the central importance to human dignity of personal autonomy,

States should take adequate measures, without violating their other Covenant obli-
gations, to prevent suicides, especially among individuals in particularly vulnerable
situations,44 including individuals deprived of their liberty. States parties that allow
medical professionals to provide medical treatment or the medical means to facilitate
the termination of life of afflicted adults, such as the terminally ill, who experience
severe physical or mental pain and suffering and wish to die with dignity,45 must ensure
the existence of robust legal and institutional safeguards to verify that medical profes-
sionals are complying with the free, informed, explicit and unambiguous decision of
their patients, with a view to protecting patients from pressure and abuse.46

Termination of pregnancy
There is no discussion in the General Comment on ICCPR Article 6 of the possibility that the
embryo or fetus might itself have a right to life falling within the article. Instead, the focus is very
much on the protection of the Article 6 rights of the mother.47
Where pregnancy or childbirth might risk the ‘life and health’ of the mother or where ‘carrying
a pregnancy to term would cause the [mother] substantial pain or suffering, most notably where
the pregnancy is the result of rape or incest or where the pregnancy is not viable’ safe, legal, and
effective access to abortion must be provided.48 In all other cases, says the comment, abortion must
not be regulated ‘in a manner that runs contrary to their duty to ensure that women and girls do
not have to resort to unsafe abortions.’49 Any measure or practice that compels resort to unsafe
abortion should be removed.‘States parties should remove existing barriers to effective access by
women and girls to safe and legal abortion, including barriers caused as a result of the exercise of
conscientious objection by individual medical providers, and should not introduce new barriers.’50
This presumably cannot amount to a direction to abolish the right of conscientious objection
(except possibly in the case of abortion which is needed in order to save the mother’s life), since
such abolition would offend other fundamental principles of the UDHR.

44 CCPR/C/79/Add.92, para 11.

45 Committee on Economic, Social and Cultural Rights, CESCR General Comment No. 14:The Right to the Highest
Attainable Standard of Health (Art. 12) (2000) (20).
46 CCPR/C/NLD/CO/4, para 7.
47 See GC 36 1(8).
48 Mellet v Ireland (CCPR/C/116/D/2324/2013), paras 7.4–7.8; CCPR/C/IRL/CO/4, para 9.
49 Human Rights Committee, GC 28(10) (2000) on the equality of rights between men and women. See also, e.g.,
CCPR/C/ARG/CO/4, para 13.
50 GC 36 1(8).

19
 Charles Foster

Article 5
Article 5: No one shall be subjected to torture or to cruel, inhuman or degrading treat-
ment or punishment.

UDHR Article 5’s main expression is through ICCPR Article 7, which provides that ‘No one
shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment. In
particular, no one shall be subjected without his free consent to medical or scientific experi-
mentation.’
There is a short but comprehensive General Comment.51
There is a comparable provision in the CRC52 and the CRPD,53 and the Convention against
Torture and Other Cruel, Inhuman or Degrading Treatment and Punishment deals in detail
with this area.
Article 7 is absolute. It cannot be limited or qualified in any way,54 and protects both physical
and mental integrity.55
The provision of most relevance to this chapter is that prohibiting non-consensual medical
or scientific experimentation.The Second World War heredity is obvious.
Where valid consent cannot be given (and in particular where the subject is detained in any
way) the General Comment mandates special protection.56 It goes on to note that ‘[s]uch persons
should not be subjected to any medical or scientific experimentation that may be detrimental to
their health.’57 Consent procedures (and indeed philosophical accounts of what constitutes ade-
quate consent) vary widely between jurisdictions.This is particularly true when the patient lacks
capacity, and decisions about treatment have to be made on their behalf.There is no developed
jurisprudence under the ICCPR about how the adequacy of consent should be determined.58 The
stricture in the General Comment to Article 7 barring experiment if the experimental treatment
proposed may be detrimental to the patient’s health is surely ripe for review in the event of last-
ditch, potentially life-saving experimental treatment of an otherwise doomed patient.
There has been very little consideration by the UN Human Rights Committee or compara-
ble bodies of the provisions of Article 7 outside the context of detention, and for indications as
to how the jurisprudence of Article 7 might evolve, it is useful to look at the way that ECHR
Article 3 has been handled by the Strasbourg Court. Much attention in that jurisdiction has
been given to whether Article 3 might be breached by returning a patient from a contracting
state to another where the standards of medical care are such that suffering will result.The law is
now clear: thus in D v United Kingdom59 an HIV-positive patient could not be returned to their
state of origin where the available treatment was inadequate.
A breach of Article 3 ECHR (and no doubt of Article 7 ICCPR) does not require an act: the
articles are directed at the consequences, and accordingly an omission that results in the pro-

51 Human Rights Committee GC 20 (1992).

52 See CRC Article 37(a). For commentary, see Committee on the Rights of the Child, GC 8(11) (2006) – The
Right of the Child to Protection from Corporal Punishment and Other Cruel or Degrading Forms of Punishment.
53 CRPD Article 15.
54 GC 20(3).
55 GC 20(2).
56 GC 20(7).
57 ibid.
58 For an illustration of these difficulties in an ECHR context, see Erdinc Kurt v Turkey (2017) Application no.
50772/11
59 (1997) 24 EHRR 423

20
 UDHR Articles 1, 2, 3, 5, and 6

scribed consequences is likely to amount to a breach.Thus there was a breach of ECHR Article
3 in McGlinchey v UK, where a vomiting, dehydrated prisoner was not properly monitored.60
ECHR Article 3 has been (and ICCPR Article 7 would no doubt be) less successful in estab-
lishing that states have obligations to provide treatment, absent which the applicant will suffer.
Thus, failure to provide potentially life-saving cancer therapy did not amount to a breach of
Article 3.61

Article 6
Article 6: Everyone has the right to recognition everywhere as a person before the law.

In the healthcare context this should be read together with UDHR Article 1 (see earlier),
Article 2 (non-discrimination)62 and Article 7 (equality before the law).63
Article 16 of the ICCPR is in identical terms, and there are variants in the International
Convention on the Protection of the Rights of All Migrant Workers and Members of Their
Families,64 the African Charter on Human and Peoples’ Rights,65 and the Convention on the
Rights of Persons with Disabilities.66

60 App No 50390/99, 37 EHRR 41 (2003).

61 Hristozov v Bulgaria,Applications nos. 47039/11 and 358/12.
62 ‘Everyone is entitled to all the rights and freedoms set forth in this Declaration, without distinction of any kind,
such as race, colour, sex, language, religion, political or other opinion, national or social origin, property, birth or
other status. Furthermore, no distinction shall be made on the basis of the political, jurisdictional or international
status of the country or territory to which a person belongs, whether it be independent, trust, non-self-governing
or under any other limitation of sovereignty.’
63 ‘All are equal before the law and are entitled without any discrimination to equal protection of the law. All are
entitled to equal protection against any discrimination in violation of this Declaration and against any incitement
to such discrimination.’
64 Article 24: ‘Every migrant worker and every member of his or her family shall have the right to recognition
everywhere as a person before the law.’
65 Article 5:‘Every individual shall have the right to the respect of the dignity inherent in a human being and to the
recognition of his legal status. All forms of exploitation and degradation of man particularly slavery, slave trade,
torture, cruel, inhuman or degrading punishment and treatment shall be prohibited.’
66 Article 12:

1. States Parties reaffirm that persons with disabilities have the right to recognition everywhere as persons
before the law.
2. States Parties shall recognize that persons with disabilities enjoy legal capacity on an equal basis with
others in all aspects of life.
3. States Parties shall take appropriate measures to provide access by persons with disabilities to the support
they may require in exercising their legal capacity.
4. States Parties shall ensure that all measures that relate to the exercise of legal capacity provide for ap-
propriate and effective safeguards to prevent abuse in accordance with international human rights law.
Such safeguards shall ensure that measures relating to the exercise of legal capacity respect the rights,
will and preferences of the person, are free of conflict of interest and undue influence, are proportional
and tailored to the person’s circumstances, apply for the shortest time possible and are subject to regular
review by a competent, independent and impartial authority or judicial body. The safeguards shall be
proportional to the degree to which such measures affect the person’s rights and interests.
5. Subject to the provisions of this article, States Parties shall take all appropriate and effective measures
to ensure the equal right of persons with disabilities to own or inherit property, to control their own
financial affairs and to have equal access to bank loans, mortgages and other forms of financial credit, and
shall ensure that persons with disabilities are not arbitrarily deprived of their property.

21
 Charles Foster

As noted earlier, the embryo or fetus is not regarded as being a person with an enforceable
right under these instruments, and indeed any rights that future persons might be thought to
have would seem to have to give way to any rights under these provisions that are vested in a
living person.

Conclusion
Article 1 of the UDHR has the potential for extraordinary legal and ethical fecundity. Some of
that potential has been realised. Its spirit (a spirit informed by the Imago Dei) has informed and
infused all the other articles of the UDHR and the instruments that are parasitic on the UDHR.
But its influence has been piecemeal.As we have seen, the nearest that the UDHR gets to con-
ferring a right to health is through Article 25 (working through ICESCR Article 12), which is
the subject of the next chapter.
Article 1 of the UDHR could have been and could be used more than it has been in advo-
cating and fashioning such a right. If humans are equal in dignity and rights, and should act
towards one another as mutually supportive sisters and brothers, it is an outrage for humans
in Manhattan to expect healthcare provision orders of magnitude better than that available to
humans in sub-Saharan Africa.
The jurisprudence of the UDHR and its associated instruments has failed to deal in any
nuanced way with the foundational question:‘What is health?’The literature on this question is
vast and complex,67 but it tends towards a holistic conception of health as human thriving – a
conception which itself depends on an account of the sort of creatures that humans are per-
ceived to be. UDHR Article 1 is clear about what we are, and therefore has a potent contribu-
tion to make to the debate about global health rights. Dignity, too, the conception at the heart
of UDHR Article 1, needs to be pressed more urgently into front-line service than it has been.
Dignity appears, undefined, as a placeholder, in the post-Second World War declarations. It is
time for it to be given some hard-edged meaning, and to start doing some real work.

References
Committee on Economic, Social and Cultural Rights, CESCR General Comment No. 14:The Right to the
Highest Attainable Standard of Health (Art. 12).
Committee on the Elimination of All Forms of Discrimination Against Women and Committee on
the Rights of the Child, Joint General Recommendation No. 31 of the Committee on the Elimination of
Discrimination against Women/general Comment No. 18 of the Committee on the Rights of the Child (2014).
Foster, Charles and Herring, Jonathan ‘What Is Health?’ in Law and Global Health: Current Legal Problems
(Oxford University Press 2014) 23–36.
Human Rights Committee, General Comment No. 6:Article 6 (Right to Life).
UN Human Rights Committee, General Comment No. 31, The Nature of the General Legal Obligation Imposed
on States Parties to the Covenant (2004).

67 For a survey, see Charles Foster and Jonathan Herring, ‘What Is health?’ in Law and Global Health: Current Legal
Problems (OUP 2014) 23–36.

22
 3
UNIVERSAL DECLARATION
OF HUMAN RIGHTS, PART 2
Articles 7, 12, 16, 18, 19, and 25

Jonathan Herring

Introduction
This chapter will explore the relevance of Articles 7, 12, 16, 18, 19, and 25 of the Universal
Declaration of Human Rights (UDHR) to a claim to a right to health. The basic claim for a
human right to health is straightforward: health is core to a person’s well-being. As the High
Commission for Human Rights1 puts it:

Regardless of our age, gender, socio-economic or ethnic background, we consider our

health to be our most basic and essential asset.

Apart from life itself, health is a prerequisite for much that we consider good in life. If interests
deserve to be protected by rights, one of our primary interests must be in health. As Matthew
Liao2 argues, the most plausible basis for human rights is to determine what are the ‘fundamental
conditions for pursuing a good life.’ He explains these are

The fundamental conditions comprise various goods, capacities, and options that
human beings qua human beings need, whatever else they qua individuals might need,
in order to pursue certain basic activities, such as deep personal relationships with one’s
partner, friends, parents, children; knowledge of the workings of the world, of oneself,
and of others; active pleasures such as creative work and play; and passive pleasures such
as appreciating beauty.

1 Office of the United Nations High Commissioner for Human Rights, The Right to Health (United Nations 2019).
2 Matthew Liao,‘Human Rights and Public Health Ethics’ in Anna Mastroianni, Jeffrey Kahn and Nancy Kass (eds)
The Oxford Handbook of Public Health Ethics (Oxford University Press 2019).

23
 Jonathan Herring

Those things that inhibit such a flourishing life can be regarded as ill health.3 In saying that, I
do not agree that everything currently regarded as an illness is ill health, but that is an argument
for another time.4
The next stage of the analysis must be that not every cause of inequality justifies a right. One
key reason why health does is that it is beyond the reach of an individual on their own.This is all
the more so when it is accepted that health includes not just access to healthcare, but protection
from unhealthy environmental issues and other causes of ill health.5 Clearly a citizen cannot take
their own steps to produce these.
From this starting point many questions arise. What exactly is meant by health? What is
required of a state if it is protect health? How are rights to health to be balanced against other
rights? In this chapter, I will explore how the articles under consideration can assist in answer-
ing such questions.
Despite the seeming obvious importance of health, it is notable that a right to health is
not explicitly protected in the UDHR, although subsequent international rights documents
have included it. For example, Article 12 of the International Covenant on Economic, Social
and Cultural Rights protects the right to the highest attainable standard of health.The United
Nations Committee on Economic, Social and Cultural Rights (CESCR) in General Comment
14 explains that right in this way:

health is a fundamental human right indispensable for the exercise of other human
rights. … The right to health is closely related to and dependent upon the realiza-
tion of other human rights, as contained in the International Bill of Rights, including
the rights to food, housing, work, education, human dignity, life, non-discrimination,
equality, the prohibition against torture, privacy, access to information, and the free-
doms of association, assembly and movement. These and other rights and freedoms
address integral components of the right to health.

So, while there is a lively debate as to whether it is appropriate to claim a right to health, it will
be argued in this chapter that a right to health is a key aspect of all the rights to be discussed.
It would be impossible to protect the rights of equality, for example, without also protecting a
right to health. This makes it implausible there is not a right to health. Or, putting it another
way, if there is no human right to health, it is not clear there can be a human right to anything.6

Article 7
Article 7:All are equal before the law and are entitled without any discrimination to equal
protection of the law. All are entitled to equal protection against any discrimination in
violation of this Declaration and against any incitement to such discrimination.

3 Jason Eberl, Eleanor Kinney and Matthew Williams, ‘Foundation for a Natural Right to Health Care’ (2011) 36
Journal of Medicine and Philosophy 537.
4 Charles Foster and Jonathan Herring, ‘What is Health?’ in M Freeman, S Hawkes and B Bennett (eds) Law and
Global Health (Oxford University Press 2014).
5 For concern that extending a right to health beyond a right to health care services is too broad, see Kristen Hessler
and Allen Buchanan,‘Equality, Democracy, and the Human Right to Health Care’ in Rosamond Rhodes, Margaret
Battin, and Anita Silvers (eds) Medicine and Social Justice: Essays on the Distribution of Health Care (Oxford University
Press 2012).
6 Nicole Hassoun,‘The Human Right to Health’ (2015) 10 Philosophy Compass 275.

24
 UDHR Articles 7, 12, 16, 18, 19, and 25

It will be argued here that a failure to provide health will inevitably involve a breach of the right
to equal protection and freedom from discrimination. An inherent part of ensuring equality is
to ensure access to health services.
Before developing that point we need to examine the wording of Article 7. The first sen-
tence in Article 7 focuses on equality before the law and the second on equal protection of the
law.7 Article 2 is wider, recognising a general right to non-discrimination to all rights under the
UDHR:

Everyone is entitled to all the rights and freedoms set forth in this Declaration, without
distinction of any kind, such as race, colour, sex, language, religion, political or other
opinion, national or social origin, property, birth or other status. Furthermore, no dis-
tinction shall be made on the basis of the political, jurisdictional or international status
of the country or territory to which a person belongs, whether it be independent,
trust, non-self-governing or under any other limitation of sovereignty.

Clearly there is a potential overlap between Articles 2 and 7. Article 7 is wider in two respects.
First,Article 2 is restricted to discrimination in respect of the rights and freedoms in the UDHR.
Article 7 is wider and requires equality before the law in all issues, not just in relation to the
rights in the UDHR. Second, Article 7 focuses on the idea of equality, rather than discrimina-
tion (at least in the first sentence).This is significant because the concept of equality can be seen
as wider than discrimination. A failure to remedy a profound inequality between two people
may not discriminate (it is a failure to act after all), but it might not ensure equality between the
law.This point will be developed below. Significantly for now, however, I emphasise the require-
ment to promote equality before the law will obligate the state to act positively. If in the ‘natural’
social environment one group is not equal before the law because of disadvantages caused by
distributions of social resources, then equality can only be achieved by state intervention.This
is why equality has played an important role in seeing human rights as creating positive obliga-
tions on the state to intervene and not just to inhibit state action. As the late Professor Sir Bob
Hepple8 put it:

The shift of focus from negative duties not to discriminate, harass or victimise, to
positive duties to advance equality, justify the re-invention of this branch of the law as
equality law, of which discrimination law is an essential but not exclusive part.

Some of the different forms of inequality will now be discussed.

Sex inequality
Health rights are essential to combat sex discrimination.9 This is for two reasons. First, that
women have particular health needs, which are different from men, and if not met they per-
petuate disadvantage against women. Second, other causes of disadvantage against women put

7 Dimitrina Petrova, Article 7: The Equality and Non-Discrimination Provision Appendix E to the Report of the Global
Citizenship Commission (United Nations 2018).
8 Bob Hepple, Equality:The New Legal Framework (Hart Publishing 2011) 1.
9 Included within this is discrimination based on trans status. See Maciej Szydlowski,‘Gender Recognition and the
Rights to Health and Health Care: Applying the Principle of Self-Determination to Transgender People’ (2016)
17 International Journal of Transgenderism 199.

25
 Jonathan Herring

them in a position that they are less able to access healthcare resources or respond to health
challenges.While health treatment will not ‘make right’ the wrongs of patriarchy, it will at least
prevent its impact being exacerbated.The issues of gender inequality in health go wider. Alicia
Yamin10 sets out some of the broader issues that arose from the Beijing Platform for Action in
relation to health:

poor quality and lack of responsiveness of health services; gender-specific barriers; gen-
der inequality in preconditions to health such as nutrition; sexual- and gender-based
violence, including physical and psychological abuse; HIV and other sexually transmit-
ted diseases; mental disorders related to marginalization, powerlessness, and poverty,
along with overwork and stress and the growing incidence of domestic violence as
well as substance abuse; health concerns of older women; environmental health hazards
and differential susceptibility; need for statistical data disaggregated by gender; and the
need for clinical trials and health research on women.

Some of these examples will now be developed in a little more detail.

Violence against women is a major cause of inequality.This includes sexual assault, domestic
abuse and sexual harassment.11 The United Nations12 states:

It is estimated that 35 per cent of women worldwide have experienced either physi-
cal and/or sexual intimate partner violence or sexual violence by a non-partner (not
including sexual harassment) at some point in their lives. However, some national
studies show that up to 70 per cent of women have experienced physical and/or sex-
ual violence from an intimate partner in their lifetime. Evidence shows that women
who have experienced physical or sexual intimate partner violence report higher
rates of depression, having an abortion and acquiring HIV, compared to women
who have not.

Domestic abuse is perpetrated primarily against women13 and causes severe physical and psy-
chological injuries which, if untreated, can be severe.The abuse itself can create serious barriers
to women accessing treatment for the impact of these forms of violence and so a safe, efficient,
easy access health service is essential.
Gender discrimination in employment and higher rates of poverty are severe in most
countries. In even the wealthiest Organization for Economic Cooperation and Development
(OECD) countries, there are significant pay gaps, which can be magnified when intersecting
factors are taken into account.14 Without there being an acknowledged right to health, citizens
will be expected to meet their own health needs. Those in poverty will have less access to
healthcare needs and resulting ill health will exacerbate their poverty. Further, poverty is closely
connected to impacts on people’s psychological and emotional well-being.15

10 Alicia Yamin,‘Women’s Health and Human Rights: Struggles to Engender Social Transformation’ in José Zuniga,
Stephen Marks, and Lawrence Gostin (eds) Advancing the Human Right to Health (Oxford University Press 2013).
11 Herring, Human Rights and Domestic Abuse (Intersentia, 2020).
12 UN Women, Facts and Figures: Ending Violence against Women (United Nations 2020).
13 Herring, Human Rights and Domestic Abuse (n 11) ch 3.
14 Organization for Economic Cooperation and Development, Inequality (OECD 2020).
15 Yamin (n 10).

26
 UDHR Articles 7, 12, 16, 18, 19, and 25

Gender can also result from the different needs for people in relation to their bodies.
Pregnancy care, childbirth provision, healthcare post birth, and contraceptive provision are all
key elements of the health of many women and people of other genders having uteruses.
Without the provision of that healthcare, there will be inequality because of the burden of these
issues falls disproportionately on women.16 To deny both men and women access to abortion
may be to treat them without discrimination, but it would not promote equality between them.
The Convention on the Elimination of All Forms of Discrimination Against Women (CEDAW)
committee in 2011 heard the case of Alyne da Silva v Brazil17 in which Alyne da Silva Pimentel
died in Brazil following pregnancy complications due to a woeful lack of care for the preg-
nancy and childbirth. The CEDAW committee concluded that the general failure to provide
maternal health services caused gender inequality.To ensure women’s equality it was necessary
for the state to ensure there were sufficient resources to enjoy health. In 2011 in LC v Peru18
the CEDAW applied similar reasoning to require access to abortion, at least in cases of rape and
sexual assault, or when a woman’s life or health is in danger.

Race discrimination
Race discrimination is a worldwide problem.As Dimitrina Petrova19 explains:

Discrimination based on race, ethnicity, color of skin, and similar characteristics is per-
vasive, and most ethnic minorities in the world today suffer various forms of discrimi-
nation and exclusion. Institutionalized discrimination against Haitians in the Dominic
Republic keeps persons of Haitian descent from registering their children as citizens,
shutting the children out of schooling and health care. People of African descent are
discriminated against on the basis of their skin color throughout South America, as
well as in Egypt and Sudan, while Roma remain to date the most disadvantaged and
systematically excluded minority throughout Europe.

And she goes on to list many other examples. As they indicate, racial prejudice is widespread,
leading to poverty and economic exclusion. Again, without there being a right to healthcare,
the disadvantages flowing from poverty and economic exclusion will be further exacerbated,
perhaps making it even harder to find employment to improve the person’s financial situation.
Even in developed countries, such as the UK, there are distinct health disadvantages con-
nected to race.As Victor Adebowlae,20 incoming chair of the NHS Confederation, and Professor
Mala Rao write:

Ethnic minority doctors and patients still face too many injustices in the NHS …
from the fivefold higher maternal mortality among black women than among white
women in the UK to the gap in performance between white and ethnic minority
students and doctors and the increased likelihood of disciplinary procedures against
ethnic minority doctors.

16 ibid.
17 CEDAW/C/49/D/17/2008.
18 CEDAW/C/50/D/22/2009 (2011).
19 Petrova (n 7).
20 Victor Adebowlae,‘It’s Time to Act on Racism in the NHS’ (2020) 368 BMJ 568.

27
 Jonathan Herring

Lillian Anekwe writes of the situation in the US:

Data from the US show that there is a clear racial gap in health – at the age of 25, the
average white American can expect to live five years longer than the average black
person. The gap by education is larger: even the better off black person with a col-
lege degree or higher level of education has a lower life expectancy than a white high
school graduate.21
This extends beyond physical health to mental health. Harding et al. found that ‘unlike
other measures of adversity, perceived racism was consistently associated with poorer
psychological wellbeing across gender, ethnicity, and age.’22

Disability discrimination
It has been estimated that around 15% of the world’s population is affected by disability dis-
crimination.23 Some disabled people require support and accommodation for medical needs
connected with their disability, and for them to achieve equal access equipment, treatment, or
surgery may be required. Without a right to health access these will be denied. Even if there
are no specific healthcare needs connected to the disability, the disability may impede access to
healthcare services, and without a right of healthcare there will be further disadvantage flowing
from that.
The importance of access to health is recognised in Article 25 of the United Nations
Convention on the Rights of Persons with Disabilities, which reads:

States Parties recognize that persons with disabilities have the right to the enjoyment
of the highest attainable standard of health without discrimination on the basis of dis-
ability. States Parties shall take all appropriate measures to ensure access for persons
with disabilities to health services that are gender-sensitive, including health-related
rehabilitation. In particular, States Parties shall:
(a) Provide persons with disabilities with the same range, quality and standard of free
or affordable health care and programmes as provided to other persons, including
in the area of sexual and reproductive health and population-based public health
programmes;
(b) Provide those health services needed by persons with disabilities specifically
because of their disabilities, including early identification and intervention as
appropriate, and services designed to minimize and prevent further disabilities,
including among children and older persons;
(c) Provide these health services as close as possible to people’s own communities,
including in rural areas;
(d) Require health professionals to provide care of the same quality to persons with
disabilities as to others, including on the basis of free and informed consent by,
inter alia, raising awareness of the human rights, dignity, autonomy and needs of

21 Lillian Anekwe ‘Harnessing the Outrage: It’s Time the NHS Tackled Racial Bias’ (2020) 368 BMJ 341.
22 Seeromani Harding, Ursula Read, Oarabile Molaodi et al.,‘The Determinants of Young Adult Social Well-Being
and Health (DASH) Study: Diversity, Psychosocial Determinants and Health’ (2015) 50 Social Psychiatry and
Psychiatric Epidemiology 1173.
23 WHO, World Report on Disability (WHO 2011).

28
 UDHR Articles 7, 12, 16, 18, 19, and 25

persons with disabilities through training and the promulgation of ethical stand-
ards for public and private health care;
(e) Prohibit discrimination against persons with disabilities in the provision of health
insurance, and life insurance where such insurance is permitted by national law,
which shall be provided in a fair and reasonable manner;
(f) Prevent discriminatory denial of health care or health services or food and fluids
on the basis of disability.

The Convention also includes some more specific rights, such as Article 19, protecting rights to
independent living and being included in the community and Article 26 which requires states
to ‘take effective and appropriate measures, including through peer support, to enable persons
with disabilities to attain and maintain maximum independence, full physical, mental, social and
vocational ability, and full inclusion and participation in all aspects of life.’ It should be added that
these rights can apply to mental health issues as well as physical health issues.24
These claims are all the stronger if the social model of disability is adopted. Penny Weller25
explains:

The social model of disability addresses the environmental constraints that limit the
ability of people with disabilities to engage in community life. It draws attention to the
relationship between stigma, discrimination, structural inequalities, inadequate service
provision and deficits in health.

Even if the social model is only accepted as a partial explanation of the consequences of disabili-
ties, because it means the state contributes to certain bodies being disabled, by the allocation and
form of social provision, the state has a particularly heavy obligation to mitigate those.

Using equality to develop a broader perspective on the right to health

There is, however, more to be said about equality than simply to say that disadvantaged groups
will be further disadvantaged without access to health. Dimitrina Petrova26 explains that the
development of the notion of equality is significant because it leads to a move

from an approach that is individualistic and defensive to one that is collectivistic and
proactive; from a patchwork of norms to a unitary (unified, integrated) framework;
from regulation of contractual relations in employment and other areas to a human
rights approach; clarifying the definitions of discrimination, harassment, and victimi-
zation and applying them consistently across all protected characteristics; widening
the circumstances in which positive action (affirmative action) is allowed; increasing
focus on the interconnectedness of the different types of inequalities and disadvantages;
expanding positive duties on public sector bodies to advance equality in respect of all

24 Andrew Molas, ‘Defending the CRPD: Dignity, Flourishing, and the Universal Right to Mental Health’ (2016)
20 The International Journal of Human Rights 1264.
25 P Weller,‘The Right to Health:The Convention on the Rights of Persons with Disabilities’ (2010) 35 Alternative
Law Journal 66.
26 Petrova (n 7).

29
 Jonathan Herring

protected characteristics; and the beginning of attempts to relate status equalities with
socio-economic equality.

This chapter will next develop two of these themes in particular: moving to a collective under-
standing of health and the importance of positive duties to promote health.

Individualistic to collective

International understandings of equality rights have moved from an individualist to a collective

understanding of rights. In other words, the focus is not particularly on whether the individual
has been the victim of discrimination (although that is an important issue) but whether the soci-
ety is promoting equality between women. If we go back to the case of Alyne da Silva v Brazil,
an individual approach would have focused on whether or not the denial of pregnancy health
treatment was in the case of the particular woman an interference in her rights or whether she
could show she was discriminated against. That might have been a hard case to make. A col-
lective approach, as undertaken by the CEDAW committee, looked at whether the provisions
of health services to pregnant women and women in labour were generally appropriate. From
that perspective it was relatively easy to be able to find that as a whole, pregnancy services were
inadequate and her case was a manifestation of that. It can enable an approach which recognises
the wrong both to the group of women and to the particular woman in question.27 It can be
beneficial to an individual claimant because it may be hard to establish that, in their particular
case, they were discriminated against. However, it may be much easier to show a whole class of
people (of which one is a member) were discriminated against.
Some have used this approach to deny rights to health. Gopal Sreenivasan28 argues that,
because public health involves public goods, individuals cannot claim a right to the promotion
of their health. He gives the example of developing herd immunity to diphtheria through vac-
cination. That might be seen as a public good for health, but no one can claim a right to her
immunity. No one individual can compel another person to be vaccinated against their will.This
is not a convincing argument. All it shows is that there cannot be an absolute right to health
through public goods. It does not mean there cannot be a right to have a programme of volun-
tary vaccination.While we cannot compel vaccination in the name of other’s rights to health (at
least generally), that does not mean that there is no right to health, just that it can be trumped
by other people’s right to bodily integrity, for example.
The importance of collective rights is particularly important when we look beyond claims
to a failure to provide health services to broader challenges to health such as environmental pol-
lution. There it may be particularly difficult for an individual to demonstrate that their health
issues were caused by the pollution. However, statistics might readily demonstrate that the col-
lective health of a group was impacted by a polluted environment.
There is a broader truth here too. If we want to achieve health we must focus on producing
a healthy society.29 Human identity is found in relationship with others, from our beginning to
our end and beyond – in the memories we have and other legacies we leave.As COVID-19 has
visibly demonstrated, a healthy person in an unhealthy society will not remain well for long.
There is great wisdom in the National Aboriginal Health Strategy Working Party:

27 Rakesh Chandra, ‘Collective Rights v Individual Rights’ (2017) 4 International Journal of Multidisciplinary
Research and Development 51.
28 Gopal Sreenivasan,‘A Global Right to Health: Some Inconclusive Scepticism’ (2012) 86 Aristotelian Society 239.
29 Foster and Herring,‘What Is Health?’ (n 4).

30
 UDHR Articles 7, 12, 16, 18, 19, and 25

Aboriginal health is not just the physical wellbeing of an individual but is the social,
emotional and cultural wellbeing of the whole community in which each individual is
able to achieve their full potential thereby bringing about the total wellbeing of their
community. It is a whole-of-life view and includes the cyclical concept of life-death-
life.30

All bodies have needs. Our society has built up a wide range of structures and forms of assistance
which disguise our mutual dependence. It highlights the needs of some bodies and disguises the
needs of others. Indeed we are forced by a wide range of societal pressures to disguise or mitigate
our vulnerability so that we can behave in an acceptable way in the public realm. In a powerful
article, Kate Lindemann31 contrasts the emphasis on ‘accommodations’ made to assist disabled
people, with the lack of appreciation of how much accommodation there is for the able-bodied:

Colleagues, professional staff members, and other adults are unconscious of the numer-
ous accommodations that society provides to make their work and life style possible.
ATM’s, extended hours in banks, shopping centres and medical offices, EZpass, news-
paper kiosks, and elevators are all accommodations that make contemporary working
life possible.There are entire industries devoted to accommodating the needs of adult
working people. Fast food, office lunch delivery, day time child care, respite care, car
washing, personal care attendants, interpreters, house cleaning, and yard and lawn ser-
vices are all occupations that provide services that make it possible for adults to hold
full time jobs.

As this quote indicates, much is made of the assistance given to help the disabled, but the reality
is we are all dependent on a huge range of resources.Able-bodied people need the provision of
stairs to get to the first floor as much as the wheelchair user needs the lift.Yes, it is the provision
of the lift for which we pat ourselves on the back for making such excellent provision for the
disabled. In fact, we all depend on a wide range of social provisions to live in our society, from
sewerage to supermarkets; from banks to buses. Our self-sufficiency is a myth. So, it is not just
that a failure to meet the health needs of the ‘disadvantaged’ perpetuates disadvantage and so we
need a right to health for all. It is that in a societal allocation of resources we have created some
whose health needs are met and rendered some disabled. The equality of healthcare provision
requires a far bigger imagining than simply ensuring everyone can see a doctor. It requires a rec-
ognition of the multiple ways bodies are ‘abled’ or ‘disabled’ by a wide range of societal provision.

Positive duties

The right to equality requires action. As argued earlier, in a situation where the ‘natural’ posi-
tion is inequality, then a failure to intervene will mean the inequality will be perpetuated. For
people to be equal, there need to be interventions by the state to remedy existing inequalities
and health is an obvious example of where basic health needs must be met if equality is to be
promoted.32

30 Quoted in Paula Boddington and Ulla Raisanen, ‘Theoretical and Practical Issues in the Definition of Health:
Insights from Aboriginal Australia’ (2009) 34 Journal of Medicine and Philosophy 49, 51.
31 Kate Lindemann,‘The Ethics of Receiving’ (2003) 24 Theoretical Medicine and Bioethics 501, 507.
32 Sandra Fredman, Comparative Human Rights Law (Oxford University Press 2018), ch 8.

31
 Jonathan Herring

The contrasting view is that human rights should only be about stopping the state interfer-
ing in people’s liberty. From that perspective, ill health is a result of natural events and so is not
the responsibility of the state. The state must not harm people’s health, but it has no positive
obligation to intervene. Nowadays such a limited understanding of human rights would be
rejected as being outdated. Increasingly, human rights are seen as imposing obligations on the
state to ‘facilitate freedom and advance substantive equality.’33 A state which does not provide
health treatments and this produces inequality cannot wash its hands on the basis that it is not
responsible for that inequality. Take, for example, air pollution. The state can choose whether
or not to regulate air pollution.There is no ‘neutral’ position. Either the state does not regulate
and thereby permits air pollution, with the resulting ill health; or it does regulate it, with the
resulting health benefit.
If we are to ensure that people have the essential requirements to a minimum standard of
well-being the state must provide healthcare facilities and intervene where environments are
healthy. The CESCR explained that to meet a right to health, healthcare facilities had to be
available, accessible, acceptable, and of good quality.34 Availability refers to not just to health ser-
vices and treatments but also underlying necessities of health (e.g. clean water).The accessibility
requirements require that the provisions are available ‘without discrimination, physically acces-
sible, economically accessible (i.e. affordable), and accessible health-related information.’35 The
acceptability requirement refers to the fact that it be provided in a way which respects cultural
sensitivities and is in line with medical ethics. The quality of care requires that the treatments
be medically appropriate and given by skilled personnel and in line with scientific advice.All of
these require positive actions by the state to ensure they are not provided they will result in ine-
quality. More precisely, the CESCR36 (para 45) has set out some ‘core minimum’ that is needed:

(1) to ensure the right of access to health facilities, goods and services on a non-discriminatory
basis, especially for vulnerable or marginalized groups;
(2) to ensure access to the minimum essential food which is sufficient, nutritionally adequate
and safe, to ensure freedom from hunger to everyone;
(3) to ensure access to basic shelter, housing and sanitation, and an adequate supply of safe and
potable water;
(4) to provide essential drugs, … defined by WHO’s Action Programme on Essential Drugs;
(5) to ensure equitable distribution of all health facilities, goods and services; [and]
(6) to adopt and implement a national public health strategy and plan of action, on the basis of
epidemiological evidence, addressing the health concerns of the whole population.

Without the provision of these, inequalities will inevitably result. The list, however, seeks to
impose obligations which are manageable for all states and do not depend on the particular
economic position of individual countries.37

33 ibid.
34 Stephen Marks,‘The Emergence and Scope of the Human Right to Health’ in José Zuniga, Stephen Marks and
Lawrence Gostin (eds) Advancing the Human Right to Health (Oxford University Press 2013).
35 ibid.
36 Committee and Economic Social and Cultural Rights, The Right to the Highest Attainable Standard of Health
(CESCR 2000), para 45.
37 Benjamin Mason and Lawrence Gostin,‘Framing Human Rights in Global Health Governance’ in José Zuniga,
Stephen Marks, and Lawrence Gostin (eds) Advancing the Human Right to Health (Oxford University Press 2013).

32
 UDHR Articles 7, 12, 16, 18, 19, and 25

Paul Hunt38 highlights a further important aspect of ensuring equality through healthcare
when he states

a human rights-based approach requires that special attention be given to disadvan-

taged individuals and communities; it requires the active and informed participation
of individuals and communities in policy decisions that affect them; and it requires
effective, transparent and accessible monitoring and accountability mechanisms. The
combined effect of these is to empower disadvantaged individuals and communities.

This points to the importance of working with communities to ensure healthcare provision
is met. This is particularly important given the widespread rejection of paternalistic forms of
medicine where doctors determine the appropriate treatment for patients and an individual is
expected simply to accept their expert view. Instead, doctors and patients are expected to work
together to forge an appropriate response.39 In any event it is simply a matter of effectiveness.
Healthcare interventions which do not chime with the value or culture of a community simply
will not work.

Conclusions on Article 7
It has been argued in this section that the rights to equality in Article 7 can only be met if there
is a right to health. This right to health must be understood as a collective right as well as an
individual right if it is to combat inequality. Further, it must be seen as a positive right: not just
a right not be discriminated in the health context, but requiring state action.

Article 12
Article 12: No one shall be subjected to arbitrary interference with his privacy, family,
home or correspondence, nor to attacks upon his honour and reputation. Everyone has
the right to the protection of the law against such interference or attacks.

At first sight, Article 12 does not look a promising start for a right to health because it seems
that the right is primarily a negative one preventing the state from interfering in an individual’s
life. Indeed, if anything it seems most relevant as providing the basis of a right to refuse treat-
ment. However, I will argue that a deeper understanding of the right to privacy can make it
more progressive.
Before developing that argument, however, I want to say a little more about the right to
refuse treatment, a breach of which would infringe Article 12.That right is an important aspect
of the right to health. At first that might seem a surprising claim, because the right to refuse
treatment might look like a right not to have health, rather than a right to have health. But, in
support of the claim, I would emphasise that good medical treatment is found in a dialogue
between the patient and the doctor. The doctor needs to inform the patient of the different
options available and the patient needs to inform the doctor of what values and outcomes are

38 UN Special Rapporteur on Health, The Right of Everyone to the Enjoyment of the Highest Attainable Standard of
Physical and Mental Health (United Nations 2006).
39 Jonathan Herring, Bill Fulford, and Ashok Handa,‘Elbow Room for Best Practice? Montgomery, Patients’Values
in Balanced Decision-Making in Person-Cantered Clinical Care’ (2017) 25 Medical Law Review 582.

33
 Jonathan Herring

important to them. It is only with the contributions of both parties and the ensuing dialogue
that good medical treatment is offered. If a patient has no right to refuse treatment and the doc-
tor simply decides what is best and imposes it, counterproductive treatments will be given.The
patient may refuse to take the required medication or the outcome will be seen as disastrous by
the patient, even though most people would have been happy.The right to refuse treatment is,
therefore, an important aspect of the right to good health.
Turning next to explore how the right to privacy can generate a more general right to
health: to gain a good understanding of privacy we need to appreciate what is the value that
underpins privacy. At its heart, privacy is commonly thought to be about being left alone, but
why? Elizabeth Schneider,40 in a seminal article, argues that underpinning privacy is the right
to be left to flourish as a person.That is why we need private space to be able to develop our
relationships and understandings of ourselves. John Eekelaar has written of the need for a ‘privi-
leged sphere’:

that love itself demands such a space if it is to sustain a lifelong partnership.The value
of the privileged sphere lies in the freedom to engage in unregulated activity irrespec-
tive of the inherent capacity of the activity to advance the well-being either of the
actors or of others.41

That is why there is more to privacy than being left alone. Being lonely is not in itself a value,
particularly if one does not want to be alone. It is being left alone, so that we are able to engage
in those core human activities of building relationships and contemplating our lives. Once we
understand that this is the value underpinning it we can develop what Schneider calls a more
‘affirmative concept of privacy.’42 Privacy becomes about giving someone the ability to express
and develop themselves in terms of their relationships and self-understandings. It is true that
in some cases the primary role of the government in enabling this will be to keep out of peo-
ple’s lives. However, there will be other cases where a person needs government intervention
to enable their relationships to flourish and to inspect their lives. We do already acknowledge
this in the case of disability where a person may need resources and support to enable them to
develop relationships. But this may be true in far more cases than those traditionally labelled
‘disabled people.’
This approach to privacy has been accepted by the courts in domestic abuse cases, where
rather than privacy being used as a reason for why the state should not intervene to protect a
victim of domestic abuse, it has been used as a justification requiring intervention.43 Only by
intervening and freeing a person from an abusive relationship can they enjoy the goods which
rest at the heart of privacy. But there is no reason to limit this kind of thinking to domestic abuse
cases. Ill health can inhibit a person’s ability to experience relationships and flourish. Hence,
privacy generates a right to health.
Article 12 also speaks of protection from honour or reputation. A modern version of the
UNHR would probably use the word dignity rather than honour. Many influential accounts of
dignity have referred to the idea of honour.44 Dignity is about showing due honour the status

40 Elizabeth Schneider,‘The Violence of Privacy’ (1991) 23 Conn L Rev 973.

41 John Eekelaar, Family Law and Personal Life (Oxford University Press 2006), ch 2.
42 Schneider (n 40).
43 Herring, Human Rights and Domestic Abuse (n 11) ch 3.
44 Jeremy Waldron, Dignity, Rank, and Rights (Oxford University Press 2006).

34
 UDHR Articles 7, 12, 16, 18, 19, and 25

that all persons have.A person who is not treated as having that equal worth and honour due to
a human being is denied the respect necessary to engage as a human being. For a person with
an illness or disability for which they seek health provision, if that is denied it can lead to them
not being recognised as having the equal value.45
While difficult to define,46 Ronald Dworkin has claimed that the very idea of human rights
depends upon ‘the vague but powerful notions of human dignity.’47 Nussbaum48 claims that if
we accept a person has ‘a life that is worthy of … dignity’ then they are entitled to the resources
necessary for basic engagement with the world.To fail to provide these would be to disrespect
the honour due to that life. She asserts that there is an obligation on the state to nurture the
human life so that inherent capabilities can be developed. She lists ten, but Alicia Yamin49 high-
lights three that are closely tied to health:

• Life: being able to live to the end of a human life of normal length, i.e., not dying prema-
turely or having a life so reduced as to be not worth living;
• Bodily health: being able to have good health, including reproductive health, to be ade-
quately nourished; and to have adequate shelter;
• Bodily integrity: being able to move freely from place to place; to be secure against assault,
including sexual assault and domestic violence; having opportunities for sexual satisfaction
and for reproductive choice.

Even if one did not agree with the details of Nussbaum’s capabilities approach, asking what
healthcare is needed so a person can receive the honour they ought to receive as a person, that
they may be treated in a dignified way, can be a helpful way of considering what a right to health
requires.50

Article 16
Article 16: (1) Men and women of full age, without any limitation due to race, national-
ity or religion, have the right to marry and to found a family.They are entitled to equal
rights as to marriage, during marriage and at its dissolution. (2) Marriage shall be entered
into only with the free and full consent of the intending spouses. (3) The family is the
natural and fundamental group unit of society and is entitled to protection by society and
the State.

Under Article 16, it is the right to found a family which is key to Article 16. Few would now
claim that the right to marry and to found a family are bound together. Indeed, even using
standard rules of interpretation the repeated ‘to’ indicates the right to marry and the right to
found a family are two separate claims so they will be treated as such.This section will explore
what this right to found a family may involve.

45 Marks (n 34).
46 For an excellent discussion see Charles Foster, Human Dignity in Bioethics and the Law (Hart 2011).
47 Ronald Dworkin, Taking Rights Seriously (Gerald Duckworth 1977) , 198.
48 Martha Nussbaum, Women and Human Development:The Capabilities Approach (Cambridge University Press 2000).
49 Alicia Yamin,‘Women’s Health and Human Rights: Struggles to Engender Social Transformation’ in José Zuniga,
Stephen Marks, and Lawrence Gostin (eds) Advancing the Human Right to Health (Oxford University Press 2013).
50 Sridhar Venkatapuram, Health Justice:An Argument from the Capabilities Approach (Wiley 2011).

35
 Jonathan Herring

Reproductive rights: access to assisted conception

It might well be argued that the right to found a family provides a right of access to assisted
reproduction. I take it that it is uncontroversial that Article 16 would prohibit the state from
actively preventing fertile couples from producing children by, for example, involuntary steri-
lisation. Similarly, I take that for the state to prohibit access to assisted conception would be in
breach of the article.The question more relevant for this chapter is whether it grants a positive
right of access to assisted reproduction. Article 16 was, no doubt, drafted without thought of
assisted reproduction and the reference to ‘a right to found a family’ is sufficiently vague as to
not determine the question.
There are two primary ways that a case of access to assisted reproduction may be made.The
first is to draw an analogy with discrimination law and argue that there should be no disadvan-
tage suffered by those who are infertile as compared to fertile couples.This principle leads John
Harris to argue:

It seems invidious to require that people who need assistance with procreation meet
tests to which those who need no such assistance are not subjected. If we are serious
that people demonstrate their adequacy as parents in advance of being permitted to
procreate, then we should license all parents. Since we are evidently not serious about
this, we should not discriminate against those who need assistance with procreation.51

Some commentators draw a link with disability and argue that just as in other areas of life we
seek to make accommodations for disabled people so they can enjoy the same aspects of life
as other people, we should, at least prima facie, offer assisted reproduction to those ‘disabled
through infertility.’ For example, the Report of the Committee of Inquiry into Human Fertilisation
and Embryology argued:

an inability to have children is a malfunction and should be considered in exactly the

same way as any other. Furthermore infertility may be the result of some disorder
which in itself needs treatment for the benefit of the patient’s health. … In summary,
we conclude that infertility is a condition meriting treatment.52

There are, however, difficulties with drawing such a direct link to health. It is not clear that the
inability to have a child is a health issue, per se. Not least because often infertility is a relational
thing (this couple cannot produce a child), rather than necessarily the issue resting in one per-
son’s body.This causes Hane Maung53 to argue that we should avoid the analogy with a disease
and simply

consider the harms associated with involuntary childlessness, including suffering and
the thwarting of valued life projects, as well as the social, cultural and economic factors
that contribute to these harms.

51 John Harris, ‘Rights and Reproductive Choice’ in John Harris and Soren Holm (eds), The Future of Human
Reproduction (Oxford University Press 1998).
52 Department of Health and Social Security, Report of the Committee of Inquiry into Human Fertilisation and Embryology
(Her Majesty’s Stationary Office 1984) 9–10.
53 Hane Maung,‘Is Infertility a Disease and Does It Matter?’ (2019) 33 Bioethics 43.

36
 UDHR Articles 7, 12, 16, 18, 19, and 25

This argument seems closer to an autonomy, rather than a discrimination-based argument.This

is the argument that, while generally the government is under no obligation to enable someone
to meet their dreams (there is no right to the holiday in the Seychelles, however strong your
desire!), there may be some decisions which are so closely tied to identity, and which a person
cannot be expected to provide for themselves, where the state should have a duty to make provi-
sion, particularly where the outcome will be socially beneficial.
If, as I would suggest is correct, the autonomy argument is the stronger, this creates a right
to assisted reproduction, but a weaker one than would be generated by a disability discrimina-
tion claim.This seems to reflect the approach taken in the European Court of Human Rights.
In SH v Austria,54 the court acknowledged that ‘the right of a couple to conceive a child and
to make use of medically assisted procreation for that purpose is also protected by Article 8, as
such a choice is an expression of private and family life.’ However, the court went on to state
that, under Article 8(2), a state may be able to provide good reasons to interfere in that right, and
where it did, the court would, given the controversial nature of the issue, respect the margin of
appreciation. While a state may well have good reasons to deny access to IVF in certain cases,
the restrictions had to be justified.

Reproductive rights: contraception and abortion

Two challenges may be made to the claim that under Article 16 we can find a right to con-
traception and abortion as part of the right to health. First, it might be said that these are not
health matters.
Second, that the most natural reading of Article 16 is that it is a right to found a family, not
a right to prevent a child from being born.
In relation to the first issue, however, nowadays sexual and reproductive health are seen as
health issues. The World Health Organization (WHO) explains that sexual and reproductive
health (SRH) is predicated on the ability of men and women to have a

Responsible, satisfying and safe sex life and that they have the capability to reproduce
and the freedom to decide if, when and how often to do so. Implicit in this are the
rights of men and women to be informed of and to have access to safe, effective, afford-
able and acceptable methods of fertility regulation of their choice, and the right of
access to appropriate health care services that will enable women to go safely through
pregnancy and childbirth and provide couples with the best chance of having a healthy
infant.55

Once we accept that health goes beyond physical well-being to include emotion and mental
health, it seems inevitable that sexual relationships come under the ambit of health.As the Pan-
American Health Organization (PAHO) and WHO put it:

Sexual health is the experience of the ongoing process of physical, psychological and,
socio-cultural well being related to sexuality. Sexual health is evidenced in the free
and responsible expressions of sexual capabilities that foster harmonious personal and
social wellness, enriching individual and social life. It is not merely the absence of dys-

54 [2011] ECHR 1878.

55 WHO, Sexual Health (WHO 2012).

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 Jonathan Herring

function, disease and/or infirmity. For sexual health to be attained and maintained it is
necessary that the sexual rights of all people be recognized and upheld.56

Such claims are enhanced by equality provision. If men and women are to have equal access
to sexual well-being, then this requires that women, in particular, have access to abortion and
contraception.
Even if these points are found unconvincing, every year around 70,000 women die from
complications connected to unsafe abortion.57 So access to safe abortion and contraception is
clearly a health matter. Indeed, human rights to sexual health have been recognised in the
treaties which were generated from the UDHR, such as the CEDAW and the Convention
on the Rights of the Child (CRC).58
As to the second point, I would argue that contraception and abortion are key to the right to
found a family.Women’s reasons for abortion often relate to their wish to care for other family
members or a child they will have in the future. Sherwin reports from her analysis of women’s
abortion reasons that the explanations involve ‘her feelings about her foetus, her relationship
with her partner, other children she may have, and her various obligations to herself and others
– contextually defined considerations that reflect her commitments to the needs and interests
of everyone concerned.’59 One woman has explained her reasoning behind an abortion in these
terms:

I was 22 when I found out I was pregnant. I had just qualified as a teacher but was yet
to find my first teaching position. My partner had a decent job but he was recover-
ing from a prolonged period of severe depression and while he lived with his elderly
mother, I was caring for my grandmother who had been diagnosed with a degenera-
tive illness.Although we were very much in love and hoped to have children one day,
our finances and living arrangements meant we were not equipped to raise a child.We
would want to give our children the very best possible start in life and, at that time, we
didn’t have the opportunity to do so.60

Here we can see the abortion decision is connected to the right to found a family. It is about
the timing and circumstances in which the case can be offered.61 The right to abortion can,
therefore, be seen as an aspect of the right to found a family.

Articles 18 and 19
Article 18: Everyone has the right to freedom of thought, conscience and religion; this
right includes freedom to change his religion or belief, and freedom, either alone or in

56 PAHO and WHO, Sexual Health (WHO 2000).

57 Christina Zampas and Jaime Gher, ‘Abortion as a Human Right: International and Regional Standards’ (2008)
Human Rights Law Review 2.
58 Eszter Kismödi and Laura Ferguson, ‘Celebrating the 70th Anniversary of the UDHR, Celebrating Sexual and
Reproductive Rights’ (2018) 26 Reproductive Health Matters 52.
59 Susan Sherwin, No Longer Patient (Temple University Press 1992).
60 ‘Post 15’ (My Body, My Choice) http://mybody-mylife.org/user-submitted-post-15/ accessed 14 November
2020.
61 Jonathan Herring,‘Ethics of Care and the Public Good of Abortion’ (2019) 2 Oxford Human Rights Hub Law
Journal 1.

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 UDHR Articles 7, 12, 16, 18, 19, and 25

community with others and in public or private, to manifest his religion or belief in
teaching, practice, worship and observance.

Article 19: Everyone has the right to freedom of opinion and expression; this right
includes freedom to hold opinions without interference and to seek, receive and impart
information and ideas through any media and regardless of frontiers.

Articles 18 and 19 will be treated together.These rights are, of the ones considered in this chap-
ter, perhaps the most tangential to a right to health.The most significant issue may be the right
to freedom of conscientious objection.This is not the place to offer a complete analysis of that
right.62 In outline, the right states that a medical professional can maintain their perceived moral
integrity by voicing a conscientious objection to providing a particular kind of treatment. In
such a case, forcing them to provide the treatment would be in breach of their human rights.
The classic, and most common, scenario would be where a professional has moral objections to
abortion. In such a case, it would be in breach of their rights to freedom of conscience to force
them to be involved in such a procedure or to penalise them for following their conscientious.
The strongest argument in favour of this right is that we should respect people’s ‘moral integ-
rity.’As Mary Neal63 puts it:

we accept that it is sometimes necessary for a professional to be able to extract herself

from involvement in something she considers to be seriously wrong and thereby pro-
tect herself from sharing in moral responsibility for serious wrongdoing (as she sees it).

To compel a medical professional to act in such a way would be seriously wrong them.
There are other reasons too. Few patients would wish to be treated by a professional who
thought the treatment was morally wrong. It also helps contribute to a diverse workforce.
There are a few commentators who reject the whole basis of conscientious objection. Julian
Savulescu bluntly states that ‘[i]f people are not prepared to offer legally permitted, efficient, and
beneficial care to a patient because it conflicts with their values, they should not be doctors.’64
That, however, seems to ask too much of doctors. Earlier reference was made to the modern
approach to medicine being a dialogue between doctor and patients, a more relational model.
Just as a patient should not be given treatment contrary to their views, that the doctor should, at
least prima facie, not be required to provide treatment they do not wish.
So most commentators seek some kind of compromise view. That conscientious objection
should be protected unless doing so will mean a patient is denied treatment. It considers that, if
the respect for conscience means a loss of access to healthcare rights to a patient, the rights of
the patient will win out.That sounds the obvious solution in theory, but there are difficulties in
practice. Udo Schuklenk and Ricardo Smalling65 argue that a health system cannot know when

62 Christina Lamb (2016) ‘Conscientious Objection: Understanding the Right of Conscience in Health and
Healthcare Practice’ (2016) 22 The New Bioethics 33.
63 Mary Neal, ‘Conscientious Objection, “Proper Medical Treatment” and Professionalism: The Limits of
Accommodation for Conscience in Healthcare’ in John Adenitire (ed) Religious Beliefs and Conscientious Exemptions
in a Liberal State (Hart 2019).
64 Julian Savulescu,‘Conscientious Objection in Medicine’ (2006) 332 BMJ 294.
65 Udo Schuklenk and Ricardo Smalling, ‘Why Medical Professionals Have No Moral Claim to Conscientious
Objection Accommodation in Liberal Democracies’ (2017) 43 JME 234.

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 Jonathan Herring

a member of staff may raise an objection and that ‘[a]ny society that grants medical profession-
als a conscientious objection-based opt-out will have to accept suboptimal health outcomes
with regard to procedures that are considered at that point in time part and parcel of good
professional healthcare practice in those societies.’The only way we can guarantee high quality
healthcare is to not permit conscientious objection.That may well be challenged.66 It is not clear
that, for example, allowing sick leave or compassionate leave does not likewise challenge this.
Whether the highly speculative possibility that healthcare will be impeded justifies the inevita-
ble harm of requiring a person to act in breach of conscience may well be questioned, at least
without clear evidence patients are losing out on access to healthcare.

Article 25
Article 25: Everyone has the right to a standard of living adequate for the health and
well- being of himself and of his family, including food, clothing, housing and medical
care and necessary social services, and the right to security in the event of unemploy-
ment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances
beyond his control.

This broad ranging right covers food; clothing; housing; medical care; and necessary social ser-
vices, including ‘security’ (by which is meant financial and practical support).These topics can
be seen as built on two key concepts. The first is the concept of dignity. Without these rights
being met, there is unlikely to be human dignity.The list of requirements in Article 25 set out
the core needs for a flourishing life.The second clear link between these topics is health.Article
25 highlights some of the essentials a person needs and without which they would be very likely
to suffer ill-health: food, clothing, and housing. Access to treatment for illness is of little use if
the person’s living standards are such that they will simply fall ill again. Indeed, any concept of a
right to health must include not only the right of access to treatments, but the right to be pre-
vented from falling ill in the first place.As General Comment 14 to the International Covenant
on Economic, Social and Cultural Rights (ICESR) puts it:

the right to health embraces a wide range of socio-economic factors that promote
conditions in which people can lead a healthy life, and extends to the underlying
determinants of health, such as food and nutrition, housing, access to safe and potable
water and adequate sanitation, safe and healthy working conditions, and a healthy
environment.

Unsurprisingly, given their basic nature, the rights in Article 25 are also found in many other
international agreements. For example, under Article 11, the ICESCR states that:

The States Parties to the present Covenant recognize the right of everyone to an
adequate standard of living for himself and his family, including adequate food, cloth-
ing and housing, and to the continuous improvement of living conditions.

Article 27 of the UN Convention on the Rights of the Child states: ‘States Parties recognise
the right of every child to a standard of living adequate for the child’s physical, mental, spiritual,

66 Neal (n 63).

40
 UDHR Articles 7, 12, 16, 18, 19, and 25

moral and social development.’ From Article 14 CEDAW:‘States Parties shall take all appropri-
ate measures to eliminate discrimination against women in rural areas […] to ensure […] the
right […] to enjoy adequate living conditions, particularly in relation to housing, sanitation,
electricity and water supply, transport and communications.’ In terms of Europe, in Article 4(1)
European Social Charter, the contracting parties undertake ‘to recognise the right of workers to
remuneration such as will give them and their families a decent standard of living.’67
A key issue in the interpretation of this rights is how far these concepts can be understood.
Does the right demand no more than the bare minimum to survive? Are these rights in danger
of simply overwhelming a government of limited means? Before exploring those questions, a
brief outline of the key concepts in the right will be provided.

Food
In General Comment 12 on the ICESCR it is explained that the right to adequate food requires
the food to be available, sufficient in terms of nutritional quality, safe, acceptable given the cul-
tural or religious concerns of consumers, and accessible.68 These seem essential requirements
when it is recalled that the rights are designed to promote health and dignity. Another way of
addressing this might be to frame the right in terms of a right to freedom from hunger.69 It is
the element of accessibility which is problematic, particularly in so far as that is read to include
economic accessibility. It is this which is most likely to be the major challenge for many gov-
ernments.70
It is generally assumed that the right to food includes the right to water. Although Article
25 does not specifically mention it, there is specific mention of the right to water in General
Comment 15 on the ICESCR:

The right to water contains both freedoms and entitlements.The freedoms include the
right to maintain access to existing water supplies necessary for the right to water, and
the right to be free from interference, such as the right to be free from arbitrary dis-
connections or contamination of water supplies. By contrast, the entitlements include
the right to a system of water supply and management that provides equality of oppor-
tunity for people to enjoy the right to water.

Housing
This right too combines elements of both dignity and health. The United Nations estimates
that 100 million people have nowhere to live and more than a billion people have inadequate
housing.71 It is clear that a lack of or inadequate housing is linked to health. Using even England
and Wales, a developed country with a moderate climate, the statistics are striking:

67 The European Social Charter includes in Article 31 a right to housing.

68 The Committee on Economic, Social and Cultural Rights has issued detailed General Comments explaining the
components of this right.
69 Asbjørn Eide,‘The Human Right to Adequate Food and Freedom from Hunger’ (United Nations) https://digital
library.un.org/record/277522?ln=en.
70 Juanjuan Sun,‘On Right to Adequate Food and Relevant Concepts from the Legal Perspective’ (2017) 16 Journal
of Human Rights 256.
71 Habitat for Humanity,‘World Habitat Day’ www.habitat.org/volunteer/build-events/world-habitat-day accessed
11 November 2020.

41
 Jonathan Herring

The mean age at death was 45 years for males and 43 years for females in 2018; in the
general population of England and Wales, the mean age at death was 76 years for men
and 81 years for women.72

General Comments 4 and 7 of the Committee on Economic, Social and Cultural Rights help
clarify what the right to adequate housing should include: security of tenure; affordability; hab-
itability; accessibility; cultural adequacy and location (being sited to permit access to employ-
ment, schools, etc.).Again, these comments are designed to ensure that the housing offered will
promote the health and dignity of citizens.

Clothing
This right too is linked with a number of more basic rights. Clearly it offers warmth and is
important to health in that way, but it has dignity, cultural, and religious dimensions. Notably, it is
less articulated in the General Comments, although particular mention is made of older people
and disabled people who need particular kinds of clothing to promote their health.73

Medical care
As mentioned earlier, the right to health can be broadly understood to include the right to
protected from challenges to health and the requirements for health.This provision specifically
reflects a right to medical care. It is here that the issue of the extent of the right is most clear.
While there is unlikely to be a broad range of views over what might be a basic need in terms
of food, there will be more disputes in terms of medicine. Even if it is taken at a basic level, it
is clear it is often breached. According to the World Bank and World Health Organization, in
2017 at least half of the world’s population (some 3.8 billion people) is too poor to get essential
healthcare services.74

Social services and security

General Comment 19 on the ICESR explains:

The right to social security encompasses the right to access and maintain benefits,
whether in cash or in kind, without discrimination in order to secure protection, inter
alia, from (a) lack of work-related income caused by sickness, disability, maternity,
employment injury, unemployment, old age, or death of a family member; (b) unaf-
fordable access to health care; (c) insufficient family support, particularly for children
and adult dependents.
Social security, through its redistributive character, plays an important role in poverty
reduction and alleviation, preventing social exclusion and promoting social inclusion.

72 Office of National Statistics, Deaths of Homeless People in England and Wales: 2018 (ONS 2019).
73 General Comments 5 and 6.
74 Office of the High Commissioner,‘Universal Declaration of Human Rights at 70: 30 Articles on 30 Articles’ www
.ohchr.org/EN/NewsEvents/Pages/DisplayNews.aspx?NewsID=23970&LangID=E accessed 11 November
2020.

42
 UDHR Articles 7, 12, 16, 18, 19, and 25

The significance of this lies particularly in the fact that without the provision of social security
a person may be driven to dangerous or undignified means of providing for themselves or their
family, such as prostitution or begging. The references to services makes it clear that on occa-
sion, services rather than money may be required.This may be particularly relevant in relation
to personal care services for those unable to meet those needs themselves.

The extent of the right

The great challenge here is to define an adequate standard of living, which is the base level of
these rights.As Onora O’Neill asks:

Is this right only a right to the standard of health that a person can attain with locally
available and affordable treatment – however meagre that may be? Or is it a right to
the highest standard available globally – however expensive that may be? The first is
disappointingly minimal, and the latter barely coherent (how can everyone have a right
to the best?).75

There is general agreement that the extent of the required provision must depend upon the
particular circumstances of the country. ICESCR General Comment 12 finds that what is
‘adequate’‘is to a large extent determined by prevailing social, economic, cultural, climatic, eco-
logical and other conditions.’ However, there is also agreement that there must be an absolute
minimum, which is likely to involve where a person’s basic health with be affected.A common
way of understanding this issue is that there is ‘progressive realisation’: that states seek to protect
the rights to the extent to which resources are available, and as resources increase so the extent
of protection increases.76 The Icelandic Human Rights Centre77 explains that

states parties are required to continuously take steps forward in order to achieve the full
realisation of the rights recognised in the instruments.This obligation is immediately
applicable and is not subject to limitation. Hence, it is not merely an obligation to take
action at some time in the future. States, regardless of their level of development, must
take steps immediately to achieve the full realisation of the rights.

Adopting this approach, there has been much effort at establishing a ‘minimal set of basic goods.’78
These might be the lowest level that are seen as acceptable for any country.The focus on defin-
ing these is, perhaps, an acknowledgement of the difficulty in challenging a government which
states that it cannot provide a higher level of provision. In seeking to identify this we encounter
is defining in respect of what the minimal level is. Norman Daniels79 writes:

75 Onora O’Neill,‘The Dark Side of Human Rights’ (2005) 81 International Affairs 427, 429.
76 This found approval in the Inter-American Commission on Human Rights (e.g. Miranda Cortez et al. v El Salvador
(Case 11.670)).
77 Icelandic Human Rights Centre, ‘The Right to an Adequate Standard of Living’ www.humanrights.is/en/hum
an-rights-education-project/human-rights-concepts-ideas-and-fora/substantive-human-rights/the-right-to-an
-adequate-standard-of-living accessed 11 November 2020.
78 Kenneth Reinert, No Small Hope:Towards the Universal Provision of Basic Goods (Oxford University Press 2018)
79 Norman Daniels,‘Justice, Health, and Health Care’ (2001) 1 American Journal of Bioethics 2.

43
 Jonathan Herring

Meeting health needs in order to keep people close to normal functioning preserves
for people their ability to participate in the political, social, and economic life of their
society. It sustains them as fully participating citizens – normal collaborators and com-
petitors – in all spheres of social life.

This very much puts citizenship at the heart of the basic needs. Others emphasise the impor-
tance of autonomy and hence David Copp refers

the basic needs to be things that are needed in order to achieve and maintain one's
status as an autonomous and rational agent.80

One can imagine other approaches and different aspects of what it means to have a flourishing
life such as being able to participate in caring relationships81 or reaching a base level of happiness.
Even with agreement as to the level being sought, there may be disagreement over the extent
to which individuals should be expected to contribute to their own well-being. For example,
Rutger Claassen argues in favour of

A reciprocity principle, according to which agents should contribute to the realization of

their own subsistence capabilities as far as they are able to and be entitled to receive
them from others as far as they are unable.82

Not everyone would accept that principle and even among those that do there will be consider-
able dispute as to its application.83

Conclusion
This chapter has explored the relevance of Articles 7, 12, 16, 18, 19, and 25 UDHR on the right
to health. It has been argued that they all support and give clarity to the right to health. As the
1991 Vienna Declaration of the World Conference on Human Rights states:‘[a]ll human rights
are universal, indivisible and interdependent and interrelated.’84 That has been a theme of this
chapter.We cannot promote equality without ensuring there is access for all to health; cannot
protect privacy, properly understood, without a right to health; we cannot recognise rights to
family life, without a right to health.This should not, however, be seen in individual terms: as
producing a land populated by healthy bodies.We should be seeking to produce a healthy soci-
ety. That is one where society seeks to promote the equality of all; to recognise the value and
dignity of every human being; that enables relationships to flourish.That is true health.

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81 Charles Foster and Jonathan Herring, Welfare,Altruism and the Law (Springer 2015).
82 R Claassen, Capabilities in the Just Society (Cambridge University Press 2016).
83 For a very helpful discussion, see Thana de Campos, The Global Health Crisis (Cambridge University Press 2017).
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 4
A GLOBAL RIGHT TO
HEALTH AMID GLOBAL
HEALTH EMERGENCIES
Clayton Ó Néill

Introduction
This chapter deals with the connection between global rights and global health, and casts a par-
ticular eye on global health emergencies, including the COVID-19 pandemic. It focuses specifi-
cally on the effectiveness or otherwise of global responses to crises, and considers the disconnect
that can exist between national and international action/advice.
The COVID-19 pandemic quickly engulfed many corners of the world.We have responded
in various ways: with fear, anger, acceptance, trepidation, and hope for the remodelled world
that may emerge.The pandemic makes it important to consider whether and to what degree a
unified global response can or should be put in place in a manner that recognises that all people
have a right to health, and have a right to have equal and equitable access to health knowledge
and health resources.
This chapter is divided into two sections.The first section deals with ideas and interpretations
pertaining to a right to health. It sets out some of the legal instruments designed to give a global
protection to this right and that have not been considered in the previous chapters by Herring
and Foster.The second section looks specifically at how and whether a right to health operates
within the landscape of COVID-19. It assesses the degree to which current legal instruments
and the international organisations which support the application of a right to health have been
successful in achieving their aims in this context. It proposes an approach to the attainment of a
universal right to health that encompasses justice, fairness, and equity.

A universal right to health in the COVID-19 context

There has long been a universal consensus (bar the protestations of a few ascetics and deviants)
that health is intimately connected to human thriving.
The concept of a right to health has roots in many ages, regions, and philosophies. There
are traces of it in the Golden Age of Greece, in the view of autonomy articulated at the
Enlightenment, in the reaction against the commodification of humans that occurred at the
Industrial Revolution, in the international response to the Holocaust, and in the Liberation

47
 Clayton Ó Néill

theology of Latin America.1 The right is related to the principle that states must take action
to safeguard citizens’ health.2 World War II acted as a catalyst for states to cooperate with one
another and to form the United Nations.The Universal Declaration of Human Rights (UDHR)
was adopted shortly afterwards. In the immediate aftermath of World War II, the right to health
was not perceived, according to Tobin,‘as a noble aspiration or utopian goal – a perception that
characterizes its contemporary understanding.’3 Instead he says that ‘it was intimately linked,
more so than other economic and social rights, with maintaining peace and security and was
therefore considered to be of significant instrumental value.’4 Tobin makes reference to Franklin
D Roosevelt’s famous Presidential State of the Union address in 1941 where Roosevelt dis-
cussed freedoms, including ‘freedom from want – which, translated into world terms, means
economic understandings which will secure to every nation a healthy peacetime life for its
inhabitants – everywhere in the world.’5 The pursuit of health for citizens was seen as an essential
element of social, economic and cultural rights – and if those rights were to be legally protected,
so, it followed, should a right to health.
But what is ‘health’ for these purposes? It is not defined in Article 12 of the International
Covenant on Economic, Social and Cultural Rights (ICESCR).The Committee on Economic,
Social and Cultural Rights (CESCR) refers to the preamble of the World Health Organization’s
(WHO) Constitution which describes health as ‘a state of complete physical, mental and social
well-being and not merely the absence of disease or infirmity.’6 When the WHO’s Constitution
was ratified in 1948, the goal of ‘Health for All’ was a central facet. According to Ruger, the
WHO’s vision of achieving ‘Health for All’ has not been fulfilled and the efforts of the WHO,
to date, have mostly been rhetorical.7 As this chapter demonstrates, there is a good deal more
rhetoric than substance in the recent history of the idea of a universal right to health.
The most significant endorsement of a global right to health is found in Article 12 ICESCR,
which states:

1. The States Parties to the present Covenant recognize the right of everyone to the enjoy-
ment of the highest attainable standard of physical and mental health.
2. The steps to be taken by the States Parties to the present Covenant to achieve the full reali-
zation of this right shall include those necessary for:
(a) The provision for the reduction of the stillbirth-rate and of infant mortality and for the
healthy development of the child;
(b) The improvement of all aspects of environmental and industrial hygiene;
(c) The prevention, treatment and control of epidemic, endemic, occupational and other
diseases;
(d) The creation of conditions which would assure to all medical service and medical
attention in the event of sickness.

1 John Tobin, The Right to Health in International Law (Oxford University Press 2012) 9.
2 ibid 9.
3 ibid 15.
4 ibid 15.
5 Franklin D Roosevelt,The State of the Union Address to Congress 6 January 1941, in Samuel Rosenman (ed),The
Public Papers and Addresses of Franklin D Roosevelt (Random House, 1938–1950) 672. See Tobin (n 1) 24–25.
6 OHCHR, CESCR General Comment No. 14 www.ohchr.org/Documents/Issues/Women/WRGS/Health/GC14
.pdf accessed 22 October 2020.
7 Jennifer Prah Ruger, ‘Normative Foundations of Global Health Law’ (2008) 96(2) Georgetown Law Journal
423–443.

48
 A global right to health

The provision within Article 12 2(c) of a constituent element that specifies the need to prevent,
treat, and control epidemics gives a very clear endorsement to the efforts that are currently
being made to prevent the spread of COVID-19.The attendant rights within this article, includ-
ing aiming towards a highest standard of health, realisation of rights, improvement in services,
hygiene, and the development of the child sit alongside the prevention, treatment, and control
of epidemics.This recognises the fact that the right to health in terms of the prevention of the
spread of epidemics is not held within a vacuum, but is aligned with broader rights that run in
parallel with and transcend emergency health measures.
In respect of the provisions within the ICESCR, Gostin contends that, although the right to
health sets out a ‘critical framework for national and global responsibilities for health,’ there are
a number of shortcomings, as follows: (1) the right to health has goals, but the obligations are
insufficiently structured with detail in order to make them prone to thorough scrutinising and
enforcement; (2) the CESCR, which oversees the ICESCR, has very limited powers to enforce
states to comply with the ICESCR other than studying reports written by the states on their
implementation of the ICESCR, as well as formulating recommendations; (3) the ICESCR
necessitates that states act on the promises made ‘progressively,’ instead of immediately. Gostin
argues that this means that the path towards full realisation is ‘staggered and uncertain’; (4) it is
the states themselves, and not the international community, that hold the legal duty to ensure
that sufficient health services exist, even if the particular state does not have many resources and
has inadequate capacity.8 Thus, the fact that a right to health is encapsulated within the ICESCR
and is deliberated on by the CESCR does not necessarily lead to any form of automatic appli-
cation.
A right to health is incorporated within economic, social, and cultural rights.These rights are
protected in international law under the International Covenant on Civil and Political Rights
(ICCPR), while economic, social, and cultural rights are safeguarded under the ICESCR. Civil
and political rights are often regarded as more important and more concrete than abstract eco-
nomic, social, and cultural rights. Both treaties came into force in 1976 and together with the
UDHR form the International Bill of Human Rights. Indeed, both categories of rights are ‘uni-
versal, indivisible and interrelated’ and they are both looked upon in a ‘fair and equal manner, on
the same footing and with the same emphasis.’Article 2(1) ICESCR says:

Each State Party to the present Covenant undertakes to take steps, individually and
through international assistance and co-operation, especially economic and technical,
to the maximum of its available resources, with a view to achieving progressively the
full realization of the rights recognized in the present Covenant by all appropriate
means, including particularly the adoption of legislative measures.

Ssenyonjo contends that it has been indefensibly recognised that economic, social, and cultural
rights are insufficiently concrete and that they ought to be reviewed at national level rather
than at an international level, due to the lack of justiciability.9 However, according to Article 2
ICESCR, steps must be taken by states in order to achieve, as far as possible, the full realisation
of these rights. In 2008, an Optional Protocol was introduced (and came into force in 2013),
which allows for explicit breaches of economic, social, and cultural rights to be adjudicated
upon. Citizens or organisations are now able to complain to the CESCR if there has been a vio-

8 Lawrence O Gostin, Global Health Law (Harvard University Press 2014) 20.
9 Manisuli Ssenyonjo, Economic, Social and Cultural Rights in International Law (Hart 2016).

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 Clayton Ó Néill

lation of the ICESCR. In order to make this complaint, the domestic remedies must have been
exhausted and the applicant(s) must show harm or prove that their application, according to
Article 4 ICESCR,‘raises a serious issue of general importance.’10 In discussing substantive issues
pertaining to the implementation of Article 12 ICESCR, the CESCR recognised the fact that
health is ‘a fundamental human right indispensable for the exercise of other human rights.’ Every
person is entitled to enjoy the ‘the highest attainable standard of health conducive to living a
life in dignity.’11 This can be realised through differing approaches, such as WHO programmes or
particular legal instruments.The CESCR links the right to health to other international instru-
ments, such as Article 25.1 UDHR.According to the CESCR the normative context of Article
12 ICESCR includes both entitlements and obligations.The CESCR states:

The freedoms include the right to control one’s health and body, including sexual and
reproductive freedom, and the right to be free from interference, such as the right to
be free from torture, non-consensual medical treatment and experimentation. By con-
trast, the entitlements include the right to a system of health protection which provides
equality of opportunity for people to enjoy the highest attainable level of health.12

The CESCR points to the following as essential elements of the right to health: availability,
physical and economic accessibility, acceptability, and quality. The healthcare facilities must be
physically available for all citizens within a state and that these facilities must not be delivered a
discriminatory manner.13 Medical ethics and culture must be given appropriate respect, and sci-
ence and medicine must be of sufficient quality to ensure adequacy of safe treatment.This means
that healthcare professionals must be properly trained; medicines must be scientifically approved;
and there must be safe and effective equipment, sanitation, and drinking water.14
The International Covenant on Civil and Political Rights (ICCPR) is also relevant, espe-
cially Article 6 – the right to life. Like the CESCR, the Human Rights Committee exists which
focuses on state accountability. However, Gostin argues that both mechanisms are inadequately
rigorous because of the non-binding nature of their decisions.15 The respective committees
make recommendations instead of judgements that must be followed. In relation to the ICESR,
states only need to give the recommendations made by the CESCR ‘urgent consideration.’ In
the context of the ICCPR, the Human Rights Committee can only tell states ‘whether interim
measures may be desirable to avoid irreparable damage to the victim of the alleged violation.’16
Gostin explains that both of these international treaties differ in relation to acceptable limita-
tions of rights.17 He contends that the ICCPR guarantees particular rights that are so important
that they could never be denied by a state in a public health crisis. States cannot derogate from

10 ibid 252.Also see Amrei Müller,‘Limitations to Derogations from Economic, Social and Cultural Rights’ (2009)
9(4) Human Rights Law Review 557–601.
11 Committee on Economic, Social and Cultural Rights, ‘Substantive Issues Arising in the Implementation of the
International Covenant on Economic, Social and Cultural Rights’ (12 May, 2000) http://docstore.ohchr.org/
SelfServices/FilesHandler.ashx?enc=4slQ6QSmlBEDzFEovLCuW1AVC1NkPsgUedPlF1vfPMJ2c7ey6PAz2q
aojTzDJmC0y%2B9t%2BsAtGDNzdEqA6SuP2r0w%2F6sVBGTpvTSCbiOr4XVFTqhQY65auTFbQRP
WNDxL accessed 22 October 2020.
12 ibid para 8.
13 ibid.
14 ibid para 11.
15 Gostin, Global Health Law (n 8).
16 Rules of Procedure, Rule 92 (earlier rule 86).
17 Gostin, Global Health Law (n 8) 256.

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 A global right to health

these rights, but other rights can be limited. For example, freedom of expression in the ICCPR
can be limited if ‘provided by law and are necessary (a) for respect of the rights or reputations of
others; (b) for the protection of national security or of public order (ordre public), or of public
health or morals.’18 The ICESR does not include specific limitations within the articles them-
selves. Instead,Article 4 ICESCR states:

The States Parties to the present Covenant recognize that, in the enjoyment of those
rights provided by the State in conformity with the present Covenant, the State may
subject such rights only to such limitations as are determined by law only in so far as
this may be compatible with the nature of these rights and solely for the purpose of
promoting the general welfare in a democratic society.

These provisions provide a substantive legal backbone to the philosophical idea that a right to
health exists and that this right has global application.
Some additional international treaties that endorse a right to health are relevant, but are
outside the remit of this chapter. It is, however, worth noting that the right to health is apparent
in the following provisions:

• Article 5 (e)(iv), International Convention on the Elimination of All Forms of Racial

Discrimination (CERD);
• Articles 11.1 (f) and 12 of the Convention on the Elimination of All Forms of Discrimination
against Women (CEDAW);
• Article 24 of the Convention on the Rights of the Child (UNCRC);
• Article 11, European Social Charter;
• Article 16,African Charter on Human and Peoples’ Rights;
• Article 10 of the Additional Protocol to the American Convention on Human Rights; and
• Article 25 UDHR (discussed by Jonathan Herring in Chapter 3).

Thus, there is a significant body of legal instruments which supports or endorses or defends a
right to health. For this right to be vivified in practice, however, international organisational
defence is required.

The role of the WHO in the context of epidemics

The WHO, whose advice purports to transcend action at individual country level, is a body
that provides leadership on critical issues pertaining to health and sets up partnerships where
joint action is required.19 The WHO is the main international body tasked with responding to
an epidemic, such as Ebola. McInnes has stated that the WHO has ‘[t]he operational ability to
act in a crisis is noticeable by its omission.’20 The WHO also disseminates knowledge, sets the
research agenda and the norms/standards, monitors the execution of these standards and norms,
and formulates policy options based on relevant evidence and ethics. Additionally, the WHO

18 Article 19(3) ICCPR.

19 WHO,‘About WHO’ www.who.int/about/role/en/ accessed 22 October 2020.
20 Colin McInnes, ‘WHO’s Next? Changing Authority in Global Health Governance after Ebola’ (2015) 91 (6)
International Affairs 91 1299–1316.

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 Clayton Ó Néill

oversees health trends, offers technical support, and acts as a catalyst for change.According to the
Office of the High Commissioner for Human Rights (OHCHR) and the WHO:

Regardless of our age, gender, socio-economic or ethnic background, we consider

our health to be our most basic and essential asset. Ill health, on the other hand, can
keep us from going to school or to work, from attending to our family responsibilities
or from participating fully in the activities of our community. By the same token, we
are willing to make many sacrifices if only that would guarantee us and our families a
longer and healthier life. In short, when we talk about well-being, health is often what
we have in mind.21

Furthermore, the WHO’s preamble asserts that ‘[t]he enjoyment of the highest attainable stand-
ard of health is one of the fundamental rights of every human being without distinction of race,
religion, political belief, economic or social condition.’22 Therefore, the attainment of health is
something that deserves significant attention at an international level.
The work of the WHO has not always been universally affirmed. In response to the Ebola
epidemic, it was stated in The Lancet that ‘incredibly weak health systems, with few staff, little
equipment, and poor facilities’ made ‘disease surveillance, isolation, and supportive care virtu-
ally impossible without external assistance.’23 Ruger discusses how many cultural factors, such
as governmental mistrust and burial practices, ‘confounded efforts to find and treat the ill.’24
Pharmaceutical companies were criticised for their response to the Ebola epidemic.25 Ruger
cites evidence in The Lancet, where it was argued that ‘a vaccine would probably exist if Ebola
affected a large number of people in high-income countries, making research and develop-
ment financially attractive to drug companies.’26 Without doubt, the WHO was widely criti-
cised for its response to the epidemic. Clare Wenham considers these criticisms and states that
there was ‘a general consensus in the global health community that it fell short of its leadership
responsibilities.’27 The WHO recognised its own shortcomings:

The initial response was slow and insufficient, we were not aggressive in alerting the
world, our surge capacity was limited, we did not work effectively in coordination
with other partners, there were shortcomings in risk communication, and there was
confusion of role and responsibilities.28

Wenham refers to the operational and normative roles of the WHO. She claims that during
the Ebola epidemic, from a normative perspective, the WHO reacted by producing technical

21 OHCHR and WHO,‘The Right to Health: Fact Sheet No 31’ 1 www.ohchr.org/Documents/Publications/Fac

tsheet31.pdf accessed 22 October 2020.
22 WHO, Constitution of the World Health Organization (4th ed 2006) 1 www.who.int/governance/eb/who_const
itution_en.pdf accessed 22 October 2020.
23 ‘Ebola:A Failure of International Collective Action’ (2014) 384 The Lancet 637.
24 Jennifer Prah Ruger, Global Health Justice and Governance (Oxford University Press 2018) 4.
25 ibid 4.
26 ‘Ebola:A Failure of International Collective Action’ (n 23).
27 Clare Wenham, ‘What We Have Learnt about the World Health Organization and the Ebola Outbreak’ (2017)
372 (1712) Philosophical Transactions of the Royal Society of London Series B Biological Sciences https://royalsociety
publishing.org/doi/10.1098/rstb.2016.0307 accessed 22 October 2020.
28 WHO,‘Leadership Statement on the Ebola Response and WHO Reforms’ (WHO 2012) www.who.int/csr/dise
ase/ebola/joint-statement-ebola/en/ accessed 2 April 2020.

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 A global right to health

advice, engaging with communities, sharing epidemiological data, and supporting the train-
ing of healthcare works and worked on a vaccine. Nevertheless, she argues that these norma-
tive responses have been overlooked due to the criticisms of the WHO’s operational response.
According to her, a mismatch exists between the WHO’s expectations and what this organisa-
tion is authorised and able to do.29 She claims that the WHO does not have the ability to deliver
significantly on either its normative or operational roles.30
Following the Ebola epidemic, the WHO has created the Health Emergencies Programme,
with the aim of having ‘one programme, with one workforce, one budget, one set of rules and
processes and one clear line of authority.’31 The creation of this programme and recognition by
the WHO of its shortfalls in the response to the Ebola epidemic is a positive step forward in
the realisation of a proper global health agenda.The WHO has made efforts to ensure that the
Health Emergencies Programme can actually respond to the criticisms that the WHO lacks the
normative and operational abilities to tackle a global health emergency.
The response at this organisational level to epidemics has, therefore, had both positive and
questionable features.What has the response been at the national governmental level within the
global landscape?

Global responses to COVID-19

The coronavirus pandemic is now travelling through towns, cities, countries, and continents
at great speed and with calamitous effect on diverse populations. It appears to be immune to
colour, creed, race, ethnicity, status, and global geographic location, although in the developed
world there is some evidence that black ethnic monitories are disproportionately affected.There
are nuances of difference in the way in which curves are being flattened, social distancing is
being imposed or being enjoyed, governments are reacting, people are reacting.These nuances
are not insignificant, and the rates of death certainly seem to be aligned to factors which, at the
time of writing, are sometimes ambiguous.The only certain thing in February 2021 is that this
is a pandemic that is casting its shadow with global zeal and global consequence.
Responses to the virus have differed from jurisdiction to jurisdiction, with differing results.
Many of the developing countries hit by coronavirus are poorly equipped to deal with this
global pandemic, but the invidious reach of it is yet to be calibrated. India, at one stage, locked
down its 1.4 billion inhabitants. For many of the poorer citizens of this country, the problem
will not be social distancing or hand sanitising, but in finding a place to lay a head and food to
sustain a weakening self. France, Spain, and Italy were ravaged by this pandemic, which is still
spreading despite concerted efforts on the part of governments, citizens, and medical teams.The

29 Wenham (n 27).
30 Also see WHO, Report of the Ebola Interim Assessment Panel (WHO 2015) www.who.int/csr/resources/publicati
ons/ebola/report-by-panel.pdf?ua=1 accessed 22 October 2020.
31 WHO, WHO’s New Health Emergencies Programme (WHO 2016) www.who.int/about/who_reform/emergency
-capacities/emergencies-accessed22October 2020/programme2016.pdf?ua=1 accessed 04 April 2020; WHO,
‘WHO Health Emergencies Programme’ www.who.int/westernpacific/about/how-we-work/programmes/
who-health-emergencies-programme accessed 22 October 2020.The WHO states that the programme attempts
to ‘minimize the health consequences of outbreaks and emergencies.’ It does this by ‘helping countries to
strengthen capacities to detect, prevent and respond to health emergencies’; ‘mitigating the risk of high threat
diseases and infectious hazards’; ‘detecting and assessing emergency health threats and informing public health
decision-making’;‘responding rapidly and effectively to emergencies under a coordinated incident management
system; and ‘ensuring WHO’s work in emergencies is effectively managed, sustainably financed, adequately staffed
and operationally ready to fulfil its mission.’

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 Clayton Ó Néill

somewhat draconian measures adopted by China may have arrested the spread of the disease in
Asia. As I write in February 2021, in today’s news coronavirus deaths in the world have passed
2.3 million: COVID-19 is a global pandemic requiring a local response. Much of this response
will come from the fair and equitable immunisation of populations, using vaccines such as those
produced by Pfizer-BioNTech and Moderna. Some positive trends in respect of vaccines on a
country-specific basis are currently visible. It remains to be seen, however, to what degree an
appropriate sharing of vaccine resources will apply globally. It is hoped that COVAX will act as
a global solution to the problem posed by inequity in terms of distribution of vaccines. COVAX
aims to ensure that all people are provided with vaccines, including those who live in counties
that lack economic resources.32
From a European Union (EU) perspective, a common European response to the virus has
been commissioned by the European Commission to alleviate the socio-economic impact as
well as to strengthen its public health sectors.33 The European Commission’s president, Ursula
von der Leyen, has created a coronavirus response team to manage the response to the virus.
The aims of this response team are to enhance the supply of protective personal equipment and
medical supplies (such as ventilators), making the EU’s fiscal rules more flexible, establishing the
Coronavirus Response Investment Initiative to help small businesses and the health workers/
organisations, stop unnecessary travel to the EU, and set out guidelines for member states on
procedures that can be taken to safeguard the health of citizens while allowing for the traffic of
necessary goods.34 However, aspects of the EU’s response to the COVID-19 crisis have been
heavily criticised, particularly in relation to the perceived tardiness of actions taken at EU level
to procure and distribute vaccines.
The differences in the global reaction to coronavirus are not, strangely enough, wholly based
upon either economic or medical variables. For example, the UK, which has a ‘rich’ arsenal of
advanced medical knowledge, history, and know-how, had originally adopted fairly laissez-faire
testing procedures. It had missed opportunities to purchase much needed medical protective
equipment for its staff and it has not consistently complied with the WHO’s advice to ‘test, test,
test.’ Hospitals were built to cope with a huge population of critically ill patients, but, to date, are
underused, but as the third wave is striking, may yet form significant pillars in the fight against
the virus. In an effort to inhibit the spread of COVID-19, many governments throughout the
world implemented guidance that told older people (70-plus) and those with underlying health
conditions to shield away from the general public for prolonged periods. In Ireland, for example,
this was called ‘cocooning.’ In addition to this, visits by relations to residents in nursing homes
were severely limited or forbidden altogether, leading many of these residents bereft of company,
isolated, lonely, and alone. In the legitimate attempt to ensure that the health of these older and
more vulnerable people was protected, there may have been an unwritten and unheralded cost
– the well-being, mental health, and flourishing of these people may have been compromised
to such a degree that there was an inequity between cure and disease, and, in effect, the isolating
treatment may, for some, have been worse than the actual contracting of the dreaded disease. For
some relatives whose loved ones died in hospital alone and were buried almost alone or without

32 See Seth Berkley, ‘COVAX explained’ (Gavi, 3 September 2020) https://www.gavi.org/vaccineswork/covax-

explained accessed 11 February 2021.Also see WHO,‘COVAX:Working for global equitable access to COVID-
19 vaccines’ https://www.who.int/initiatives/act-accelerator/covax accessed 11 February 2021.
33 European Commission, ‘Coronavirus Response’ https://ec.europa.eu/info/live-work-travel-eu/health/coronav
irus-response_en accessed 22 October 2020.
34 European Commission,‘European Commission’s Response Team’ https://ec.europa.eu/info/live-work-travel-eu
/health/coronavirus-response/european-commissions-action-coronavirus_en accessed 22 October 2020.

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 A global right to health

fanfare, then, once again, the treatment may have been more psychologically invidious than the
disease. It may be worth perusing the legal question as to whether the right of an older person
to health, as protected under the various legal instruments mentioned earlier, was actually com-
promised, or was it a case that, in a pandemic situation, these rights are limited by the emergency
measures that must be taken to protect public health. Logically, the latter scenario is probably the
one that would sway the judgement. But, at a human level and at a human rights level, it may
well be argued into the future that there was a deprivation of liberty, that there was a derogation
of rights and the principles of the human rights instruments were not used in the spirit by which
they were intended when making freedom-limiting policies for older and vulnerable people.
In the United States (US), a White House Coronavirus Task Force has been established by
the US Department of State. A multi-trillion financial rescue package been signed into law by
President Trump, which was endorsed by both Republicans and Democrats. From an interna-
tional perspective, the US has set out a significant budget to help other countries in their hour
of need. USAID has authorised the use millions of dollars to purchase protective equipment in
over 25 countries, inter alia.35 The US, another ‘wealthy’ state initially, at the highest level, denied
that the virus would take off in the manner in which it has. Many states were tardy in their initial
response to the spread of the virus.The former leader of the US had been infected with a virus
that was originally dismissed by him as a hoax.There is disquiet in some quarters that this one
person was the recipient of extensive medical intervention, while many people in the US and
beyond have difficulty accessing the most basic healthcare.This is a key issue in the assertion of
a right to health: does the possession of wealth or power guarantee a right to health and, equally,
does the lack of wealth or power limit and minimise the opportunities that exist for others to
exercise the same right? The inequity in treatment and healthcare provision given to those in
power and those without power is not confined to America: the same injustices apply, in many
cases, globally.The reality is that there is a direct correlation between poor health provision and
the economic status of particular countries. If the right to health is a universal and inalienable
human right, it is unacceptable that differences in the provision of care exist, in many instances,
between developed and developing countries.
What are the principles that promote a right to health and that need to be applied in practice
as COVID-19 and other health emergencies continue to dominate the agenda of global health?

Justice, fairness, and equity and the moral compass

of the global response to COVID-19
Global health law involves a hybrid of human rights law, international humanitarian law, inter-
national trade/labour law, international environmental law, inter alia.36 Thana de Campos in
her book The Global Health Crisis discusses the moral value of health and responsibilities that
global stakeholders hold in response to a global health crisis.37 She contends that wealthy states,
pharmaceutical companies, and wealthy people have moral duties to those who are less privi-
leged. Her argument that these stakeholders must, as a starting point, respect everyone’s basic
human right to health is laudable.38 Equally, her argument that the concept of justice is central

35 US Department of State, ‘Coronavirus Disease 2019 (COVID-19) www.state.gov/coronavirus/ accessed 22

October 2020.
36 David P Fidler, International Law and Public Health: Material on and Analysis of Global Health Jurisprudence (2000); and
Ruger,‘Normative Foundations of Global Health Law’ (n 7).
37 Thana de Campos, The Global Health Crisis: Ethical Responsibilities (Cambridge University Press 2017).
38 ibid 263.

55
 Clayton Ó Néill

to the vindication of health rights is one that is closely aligned to the discursive journey taken
by the contributors here.39 De Campos contends that lack of medical innovation/research and
development represents the ‘crux’ of the crisis. Thus, she claims that, in order to try to rem-
edy the problem, the first pivotal issue to be resolved is ‘access to medical knowledge’ – what
she describes as ‘scientific and technical medical progress indispensable to meeting basic health
needs.’40 This, therefore, necessitates the need for pharmaceutical companies to be involved in
resolving the crisis.This is not simply a matter of benevolence: justice is a central component of
any exploration of a remedy. Her conclusion that pharmaceutical companies are duty bound to
disclose medical patents is surely sensible. De Campos’s description of a health crisis predated the
current global health emergency where the number of people afflicted by the COVID-19 virus
is multiplying exponentially at an alarming degree. Her advice is all the more relevant in this
context. Justice, medical knowledge, response from big pharma, moral duties, research, and inno-
vation – attention to all of these areas in a unified manner could put the moral duty to protect
all at the centre of the health agenda, and in protecting all, it is likely that individual countries
would, themselves, be better protected against global health emergencies.
De Campos argues that there are two conceptions of the right to health: the first is the
‘well-being conception.’This conception links health to overall well-being.The right to health
is defined as ‘a right to the highest attainable level of a person’s complete physical, mental
and social capacities.’41 This includes socio-economic conditions and ranges from ‘basic human
needs’ (e.g. shelter, sanitation, water) to more contextualised socio-economic conditions (e.g.
healthy workplace, a healthy environment). She claims that this conception of health is too
broad and too all-encompassing because health is just one factor within a range of relevant fac-
tors within the context in which a person is living.
An alternative conception of health, according to de Campos, is related to the idea of basic
health needs. De Campos states that ‘basic human needs are basic, as opposed to nonbasic,
because they are indispensable to one’s survival – they are vital to any human life because
without them the basic human goods of life and health would be threatened and violated.’42
She defines basic health needs as ‘moral and normative premises that can justify universal moral
requirements – that is, prima facie stringent (yet not absolute) duties on others.These universal
moral requirements will take the form of duties of justice and of reasons for benevolence.’43
Thus, the assumptions that underpin basic health needs provide reasons for ‘benevolent conduct’
and also supply a rationale that justifies the duties of justice that imposed upon others.44 In the
context of the global health crisis, she prioritises basic health needs over non-basic health needs:
basic health needs are at the core of a health emergency.They have moral relevance because they
are the objects of both particular basic rights and even stronger duties.These rights and duties
are more compelling than non-basic rights and duties that might be aligned to overall well
-being.45 A right to health, if is not coupled with a just and equitable division of health resources,
will be limited in its ability to have an impact upon people who are suffering the effects of a
pandemic.Thus, a global response to this pandemic must be framed within and emanate from
an agreed principle of equity.

39 ibid 264.
40 ibid 212.
41 ibid 29.
42 ibid 31.
43 ibid 36.
44 ibid.
45 ibid 39.

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 A global right to health

Friedman and Gostin extend the concept of justice as comprising the foundation upon
which a right to health is built.46 According to them, the goal of global health law must be to
create a legal framework that achieves and sustains that kind of transformation.47 They state that,
historically, global health has actually been about protecting richer countries from pathogens
originating in poorer countries.48 This has moved to a situation where it is recognised that global
health threats can start anywhere and that global health security is about the protection of eve-
rybody’s health, notwithstanding the fact that a disparity still exists between richer and poorer
countries.49 Friedman and Gostin contend that three sets of conditions are needed for public
good, i.e. public care, public health, and social determinants of health.50 They believe that public
health services are tilted toward prevention instead of treatment and that public health action
has been focused primarily on the health of populations instead of on the health of individuals.51
For Friedman and Gostin, fairness is a key component of global health with justice. In a per-
fect system, no matter how rich or poor a country is, no matter how much education a person
has received, all will have analogous healthcare results. In this perfect state, everyone would
have long and healthy lives.52 They claim that universal health coverage could go a long way to
achieving greater fairness and justice.The reality is that those with the most money go to better
schools, are paid more money, and work in safer environments and, thus, Friedman and Gostin
argue that, without a collaborative endeavour, inequalities that are apparent in social systems will
affect public health systems.53
The laudable struggle to provide a vaccine for COVID-19 that can meet the challenges of
mutation or to provide state-of-the-art steroids that will combat the worst effects of the disease
is not, in itself, enough to guarantee a right to health in developing countries where COVID-19
is weaving its way through the population. For example, let us look at the position of Sierra
Leone.At this country, the rate of death from COVID-19 is low.That is not as positive a finding
as it might appear.The worst effects of COVID-19 are to be seen in older and infirm people.
According to the WHO, life expectancy in the WHO African region is 61.2 years in comparison
to 77.5 in the WHO European region.54 The average lifespan in Sierra Leone is 54.55 The lack
of an ageing population there means that COVID-19 does not strike with as virulent a force as
in countries with older populations. Sierra Leone’s early death toll is linked to extreme poverty,
malnutrition, and grave and untreated childhood illnesses, diseases that are often preventable
and curable, but may have found insufficient popular appeal. This example points to the idea
that using resources in an almost exclusive fight against COVID-19 could have the unfortunate
consequence of supporting an inequitable approach to the application of a right to health.
The articulation of this right to health in all international legal instruments is not always
clear-cut and can meander into euphemistic and aspirational zones. But this articulation is well-

46 Eric A Friedman and Lawrence O Gostin, ‘Imagining Global Health with Justice: In Defence of the Right to
Health’ (2015) 23 Health Care Analysis 308–29.
47 ibid 310.
48 ibid.
49 ibid.
50 ibid 311.
51 ibid.
52 ibid 312.
53 ibid 313.
54 WHO, ‘Life Expectancy’ www.who.int/gho/mortality_burden_disease/life_tables/situation_trends_text/en/
accessed 22 October 2020.
55 The World Bank,‘Life Expectancy At Birth – (Total) Years – Sierra’ Leone’ https://data.worldbank.org/indicator
/SP.DYN.LE00.IN?locations=SL accessed 22 October 2020.

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 Clayton Ó Néill

meaning. Foster and Herring talk about the need to move beyond the narrow confines of our
understanding of health towards a view of human thriving that is connected to social context
and social expectations.56 In terms of global health justice, Ruger has argued that the duty of
society to preserve and enhance health lies with the ethical concept of ‘human flourishing or
human capability.’57 She states that national states have the primary role in promoting fairness
and equity, but global institutions have an important ‘secondary role’ in rectifying the problems
of inequality and the lack of fairness. Global organisations and global actors ought to support
developing countries in order to allow them to enhance and promote health.58 A world that
struggles to combat health emergencies needs to do so in a way that is mindful and protec-
tive of other less-newsworthy diseases, illnesses, and malaises that threaten defenceless popula-
tions. It is possible, for example, that far more will die of malaria than of COVID-19 in Sierra
Leone. Ssenyonjo refers to a number of factors that adversely impact upon economic, social, and
cultural rights in Africa.59 They include corruption, failure to comply with national court rul-
ings, poverty, and lack of respect for the rule of law and international bodies.60 He claims that,
in order to improve the ICESCR’s impact, a dramatic range of legal/economic/educational
policies is required, including ensuring that national legislation complies with the ICESCR;
politicians, lawyers, civil servants, and students are educated about the role of the covenant and
the justiciability of economic, social, and cultural rights; ensuring that there are proper strate-
gies adopted in order to reduce rates of poverty; and a need for greater transparency in the
organisation of public money and the actions of those in authority. He argues that the Optional
Protocol to the ICESCR must be ratified by far more states and these states need to be far less
tardy in submitting reports to the CESCR.61 The sad reality is that corruption lies at the centre
of some of the interventions that are being put in place to stop the spread of COVID-19.There
seems to be political will to try to fight COVID-19, but I am not sure if the same will exists to
fight inequity, injustice, and lack of fairness as they apply to the ‘smaller’ diseases that threaten
the health of many people. The fact that legal instruments exist to protect a right to health is,
of course, positive, but the patchy implementation and lack of visibility in the enforcement of
these rights leads to a reality where a right to health is not high on the agenda of those who
might have the power to ascribe and apply such a right.Widdows and Gostin have engaged in
theoretical debate about the weighting that is ascribed to community and individual needs as
they apply to health rights.62 What is now required is a practical approach that is both communal

56 Charles Foster and Jonathan Herring, Human Thriving and the Law (Springer 2018).
57 Ruger,‘Normative Foundations of Global Health Law’ (n 7).
58 ibid.
59 Manisuli Ssenyonjo, ‘The Influence of the International Covenant on Economic, Social and Cultural Rights’
(2017) 64 Netherlands International Law Review 259–89.
60 ibid.
61 ibid.
62 See Heather Widdows,‘Global Health Justice and the Right to Health’ (2015) 23 Health Care Analysis 391–400,
391; see Gostin, Global Health Law (n 8) 121. Heather Widdows responds to Gostin’s argument in Global Health
Law that global health is communal and is intrinsically linked to other concerns of justice, which would involve
‘all-of-society’ or ‘health-in-all’ policies and the need to focus on basic/communal health goods instead of indi-
vidual and high-tech health goods. She queries whether this broad communal version of global health justice
is ‘best served by making the right to health central to the project.’ She argues that rights are intrinsically indi-
vidualistic and works best in relation to ‘single issue campaigns’ (391).Widdows claims that Gostin’s alternative
approaches, that are less rights-focused, and, instead, focus on ‘global public goods and health security’ might be
more deliverable, while ‘avoiding the problems of rights-talk’ (391). Gostin is of the view that health/health law/
health ethics must be global and that these ethics should directly correlate with justice.Widdows does not chal-
lenge this view of ‘health-for all.’ Instead, she queries the manner in which this can be attained. Specially,‘Gostin’s

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 A global right to health

and individualistic. Resources should be shared with communities and should also be targeted
to individuals who have most need of them.
Where justice comes into play is in ensuring that richer countries share their access to health
knowledge as well as health resources and that they do so with generous enthusiasm.This gen-
erosity of spirit cannot be mandated by the WHO, but it can be encouraged at societal and gov-
ernmental level.There are currently shoots of this sharing of practice and sharing of knowledge.
From the very earliest stage in the coronavirus pandemic, the genomes to the virus were shared
with the international community and efforts to produce a vaccine have been carried out with
collaboration between nations. It appears that the fight against this global virus is producing a
global response. Notwithstanding this, individual countries are responding in an individual way:
some are shutting borders, some are instigating social distancing, some have complete lock-
downs, some have instituted draconian practices to inculcate social obedience. Many are now
imposing severe travel restrictions and some quarantine systems have been put in place. Most
countries are mindful of the recommendations of the WHO, but the disparate response at the
level of the individual country will probably, in hindsight, not have helped control the spread of
the disease.When countries act unilaterally, with the aim of protecting that individual country,
they forget that the virus knows no borders and that unified, agreed action is probably the best
response to this emerging pandemic.

Conclusion
Much has been said in the media about the uniqueness of the COVID-19 phenomenon, the
unprecedented nature of this disease, the challenging times in which we live, suggesting, in a
way, that never was society so challenged by an invidious disease. Of course, the reality is that the
penetration of a pandemic to multiple corners of the world is not unique to COVID-19. In fact,
the COVID-19 mortality rates would barely have got a mention in other ages – the bubonic
plague, for example, may have killed as much as 40% of the population.What is unique and what
is illuminating and what is questionable is the societal response to this pandemic and its diverse
formats. There are many explanations at different psychological and political levels for these
diverse responses, but in some way, at the heart of the response are different iterations of the
same desire to protect a given population from this new disease.What unites countries, broadly
speaking, is a commitment to this endeavour, but what divides them are the resources that they
have at their disposal and the medical treatments that are available and applied. Divergence
also exists in the political leadership that attaches itself to the stewardship or otherwise of the
pandemic.Why can one country have a ‘Zero-COVID’ approach and others a ‘herd immunity’

broadly communal vision of global health justice is well served by making the right to health so central to the
project.’ She claims that ‘Gostin’s use of the right to health is in some tension with his broader global vision, and as
such it might be better for Gostin to abandon or play-down rights-talk and focus less on the ‘right to health’ and
more on other approaches. She argues that Gostin’s additional focus on global public goods and health security
could be substituted for the right to health analysis. She states (392):
This would deliver many—and perhaps all—of the health goods which Gostin includes in his vision of
global health and avoid many of the problems of rights-talk.To do this would change the form rather
than the substance of Gostin’s claims. It would not affect what individuals receive, or substantially change
his construction of health. It would change the language from one of rights to one of goods. In addition
it would remove a source of tension in Gostin’s GHL [Global Health Law], making his broadly com-
munal vision of global health more robust.

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 Clayton Ó Néill

approach and still others a ‘living with COVID’ approach? The right to health is sometimes
subverted by political actions that compromise the promotion of public health.
Gostin asks a number of salient questions: Under a right to health, what are the crucial ser-
vices/goods that are guaranteed to everyone?63 What health-related obligations do states owe
to their citizens?64 What are the obligations held by the international community for advancing
the health of people, particularly in low-/middle-income countries?65 These questions have
relevance for the struggle to prevent the spread of COVID-19, and this chapter has found some
answers to these questions. If a right to health can be considered to be a service or a consumer
good, then I have tried to show here that a right to health is, indeed, guaranteed to everyone.
There are obligations on states to their citizens in terms of the application of these rights,
which is underpinned by a number of international instruments that are, however, insufficiently
robust in terms of enforcement.We have seen how developing countries do not have the same
resources to combat this virus as other countries. Developed countries have an obligation to
assist developing nations in reducing the spread of COVID-19, but action in this regard cannot
only be confined to pandemic relief because other health rights and necessities are often more
pertinent or, at the very least, exist in parallel in these contexts.The global governance mecha-
nisms that, according to Gostin, are ‘required to ensure that all states live up to their mutual
responsibilities for improving health’66 need to be founded upon aligning a right to health with
broader human rights.
It now appears that the WHO and the legal instruments that underpin healthcare and access
to it can say all they like, can infer all they like, can promise all they like about health and its
associated rights, but unless there is just and global application in practice, then these asserted
rights are founded on rocky ground and are toothless in the face of pandemics and day-to-day
illnesses alike. All citizens should have a just and equal opportunity to have access to the most
valid preventative and treatment measures. Accordingly, approaches to the implementation of a
right to health have to be underpinned by the principles of justice, fairness and equity. At the
heart of such procedures should be the sharing of knowledge, resources, and personnel. The
future thought and action of those concerned with promoting the application of a right to
health should be embraced by a shared commitment to the principles that underpin this right.

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accessed 11 February 2021
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TqhQY65auTFbQRPWNDxL accessed 22 October 2020.
de Campos, Thana, The Global Health Crisis: Ethical Responsibilities (Cambridge University Press 2017).
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63 Gostin, Global Health Law (n 8) 22.

64 ibid 25.
65 ibid 27.
66 ibid 29.

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 A global right to health

European Commission, ‘European Commission’s Response Team’ https://ec.europa.eu/info/live-work

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to Health’ (2015) 23 Health Care Analysis 308–329.
Gostin, Lawrence O, Global Health Law (Harvard University Press 2014).
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91(6) International Affairs 1299–1316.
Müller,Amrei,‘Limitations to Derogations from Economic, Social and Cultural Rights’ (2009) 9(4) Human
Rights Law Review 557–601.
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Health/GC14.pdf accessed 22 October 2020.
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s/Factsheet31.pdf accessed 22 October 2020.
Roosevelt, Franklin D,‘The State of the Union Address to Congress 6 January 1941’ in Samuel Rosenman
(ed), The Public Papers and Addresses of Franklin D Roosevelt (Random House 1938–1950).
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Journal 423–443.
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Rights’ (2017) 64 Netherlands International Law Review 259–289.
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icator/SP.DYN.LE00.IN?locations=SL accessed 22 October 2020.
Tobin, John, The Right to Health in International Law (Oxford University Press 2012).
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22 October 2020.
Wenham, Clare, ‘What We Have Learnt about the World Health Organization and the Ebola Outbreak’
(2017) 372 Philosophical Transactions of the Royal Society of London Series B Biological Sciences
1712 https://royalsocietypublishing.org/doi/10.1098/rstb.2016.0307 accessed 22 October 2020
WHO, Constitution of the World Health Organization (4th edn 2006) 1 www.who.int/governance/eb/who_
constitution_en.pdf accessed 22 October 2020.
WHO, Leadership Statement on the Ebola Response and WHO Reforms (WHO 2012) www.who.int/csr/dise
ase/ebola/joint-statement-ebola/en/ accessed 02 April 2020.
WHO, Report of the Ebola Interim Assessment Panel (WHO 2015) www.who.int/csr/resources/publications
/ebola/report-by-panel.pdf?ua=1 accessed 22 October 2020.
WHO,‘About WHO’ www.who.int/about/role/en/ accessed 22 October 2020.
WHO,‘COVAX:Working for Global Equitable Access to COVID-19 Vaccines’ www.who.int/initiatives/
act-accelerator/covax accessed 11 February 2021.
WHO, ‘Life Expectancy’ www.who.int/gho/mortality_burden_disease/life_tables/situation_trends_text/
en/ accessed 22 October 2020.
WHO, WHO’s New Health Emergencies Programme (WHO 2016) www.who.int/about/who_reform/e
mergency-capacities/emergencies-accessed 22 October 2020/programme2016.pdf?ua=1 accessed 04
April 2020;WHO,‘WHO Health Emergencies Programme’ www.who.int/westernpacific/about/how
-we-work/programmes/who-health-emergencies-programme accessed 22 October 2020.
Widdows, Heather, ‘Global Health Justice and the Right to Health’ (2015) 23 Health Care Analysis
391–400.

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 5
GLOBAL HEALTH RIGHTS
IN THE INTER-AMERICAN
COURT OF HUMAN RIGHTS
On the doctrine of the minimum core
obligations and a co-responsibility to care

Thana C de Campos-Rudinsky

Introduction
As an economic, social, and cultural right (ESCR), the human right to health grounds two types
of state duties, namely duties of immediate realisation (also called minimum core obligations)
and duties of progressive realisation. The conceptualisation of these two types of duties has
been widely debated in the field of global health rights, with scholars such as Chapman, Hunt,
Tasioulas, and Tobin providing a comprehensive analysis of the applicable international legal
instruments in determining the scope of these two duties.These legal instruments include, for
example, the International Covenant of Economic, Social and Cultural Rights (ICESCR), as
well as General Comments 3 and 14 of the United Nations Committee on Economic, Social
and Cultural Rights. However, the distinct scope of each of these two types of duties remains
unclear, leading to what I have called ‘the conflation problem,’ where moral confusion about
different types of health realities and of health duties engender practical confusion in political
deliberation and legal adjudication.
Global health rights scholars have not adequately examined how these state duties (impre-
cisely distinguished and therefore conflated in international legal instruments) have been dis-
cussed in regional human rights courts. Here, I will examine how state duties of immediate
and progressive realisation have (or have not) been further clarified, defined, and specified in
recent right-to-health cases, decided by the Inter-American Court of Human Rights (IACHR)
of the Organisation of American States (OAS).1 I will look closely at two IACHR cases: 2018
Cuscul Pivaral et al. v Guatemala and 2006 Ximenes Lopes v Brazil.The former involves a right-to-

1 The IACHR was established in 1979 by the Organization of American States (OAS) to enforce and interpret the
American Convention on Human Rights (or Pact of San Jose, adopted in 1969). Its two main functions are to
adjudicate cases of human rights violations and to advise OAS member states on legal interpretations related to
those human rights violations.

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health litigation involving vulnerable HIV patients.The latter involves a right-to-health litiga-
tion involving a vulnerable mentally ill patient. In both cases, the respective states were charged
in light of their duty to progressively realise the right to health in their jurisdiction.The critical
examination of these two cases will show that, in deriving their analysis of states’ duties directly
from international legal documents (i.e. ICESCR and General Comments 3 and 14) while also
invoking regional legal instruments (e.g. American Convention of Human Rights) for further
characterisation of OAS member states’ duties, the IACHR ends up perpetuating the conflation
problem that originated in the international legal documents, passing the conflation problem on
to the regional legal system.
The upshot of this critical examination of the IACHR jurisprudence and its inherited con-
flation problem will be the suggestion of a new understanding of what the minimum core obli-
gations of the right to health, within the OAS reality and considering the IACHR precedents,
should prescribe. I will argue that one specific duty of immediate realisation that all OAS state
members bear is the duty to care for the most vulnerable within their jurisdiction, through
adequate regulation and supervision of local healthcare institutions, private and public alike. I
contend that this should be interpreted as an obligation of conduct and, therefore, a duty of
immediate (rather than progressive) realisation. More specifically, this obligation of conduct (or
duty of immediate realisation) should entail the state’s duty to design a normative framework
to create accountability, transparency, and information-sharing mechanisms to both scrutinise
and assist healthcare institutions directly entrusted with the care of patients. States, healthcare
institutions, and other social actors share a general duty to care for patients.While states care for
patients by discharging their immediate duty to regulate and supervise healthcare institutions
under their jurisdiction, healthcare institutions care for patients by discharging their progressive
duty – in cooperation with states and others social actors – to gradually achieve the result of
highest attainable standards of physical, mental, and social well-being for all patients entrusted to
their care (as prescribed by the human right to health). A state’s duty to regulate and supervise
local healthcare institutions (private and public) is, I contend, an immediate duty because the
state is uniquely placed to realise such duty, which, generally speaking, does not need to depend
on a large allocation of resources.The conduct of regulation and supervision can and should be
immediately implemented. Conversely, the duty to directly care for patients and strive to achieve
adequate standards of physical, mental, and social well-being for all is, I suggest, a progressive co-
responsibility, contingent upon the economic and political circumstances.This progressive duty
is shared by all in that society because it depends on a shared intention to allocate significant
efforts and resources.
To put this normative argument forth, I first provide a conceptual analysis of the duties of
immediate and progressive realisation, explaining how they create what I have called the confla-
tion problem. Then, to examine how this conflation problem that originated in international
human rights documents has been passed on to regional human rights instruments and regimes,
I will introduce to the discussion two IACHR cases (i.e. 2018 Cuscul Pivaral et al. v Guatemala
and 2006 Ximenes Lopes v Brazil).Their close analysis demonstrates that the IACHR perpetu-
ates the conflation problem between immediate and progressive duties.This finding should be
relevant to those interested in the human right protection mechanism not only of the OAS, but
also of other regional regimes, in that it can provide insights on how the conflation problem
might be perpetuated in other jurisdictions too. In synthesising a body of literature not yet put
together (i.e. doctrine of minimum core obligations and IACHR jurisprudence), this chapter
expands the debates within the field of global health rights by offering a new direction on how
duties of immediate and progressive realisation should be interpreted, particularly when they fall
on developing states (such as Guatemala and Brazil and other Latin American nations), which

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 Thana C de Campos-Rudinsky

may be equally committed to the full realisation of the human right to health, but may struggle
in their reality of scarce resources. My proposed interpretation of a co-responsibility to care for
vulnerable patients, which includes a state’s immediate duties and the whole community’s shared
progressive duties, makes sense of a confusing array of theoretical issues on the doctrine of the
minimum core obligations, while proposing a practically feasible plan of action on a legal issue
on the human right to health.

Duties of immediate and progressive realisation related

to right to health: the confation problem
The distinction between ‘duties of progressive realisation’ and ‘duties of immediate realisation’
(also called ‘the minimum core obligations’) is seminal to the definition of ESCR, among which
the human right to health is included.The distinction was introduced to accommodate the fact
that the full realisation of ESCR is a long process. It cannot be achieved overnight, especially
because the fulfilment of ESCR depends on the design of institutions, which take time, effort,
and resources to materialise.2 Traditionally, the distinction between these two types has been
introduced to differentiate ESCR, which ground duties of progressive realisation, from civil and
political rights (CPR), which presumably ground duties of immediate realisation.Although this
division between ESCR and CPR has been abandoned by international human rights scholars,
who now admit that both ESCR and CPR require the design of costly institutions to be fully
realised, the distinction between duties of progressive realisation and duties of immediate realisa-
tion is still acknowledged as a useful one in the context of ESCR.

Duties of progressive realisation: obligations of result

Article 2(1) of the ICESCR defines duties of progressive realisation. It establishes that state par-
ties should strive to ‘take steps, individually and through international assistance and coopera-
tion, especially economic and technical, to the maximum of its available resources, with a view
to achieving progressively the full realisation’ of ESCR, such as the right to health. Duties of
progressive realisation are, generally speaking, defined as obligations of result – a result which is
to be achieved gradually, as states progressively take steps towards the end goal of full realisation
of ESCR. General Comment 3 (on ‘The Nature of State Parties’ Obligations’) by the United
Nations Committee on Economic, Social and Cultural Rights, in its paragraph 9, further clari-
fies the duties of progressive realisation as obligations of result in this way:

The principal obligation of result reflected in article 2 (1) is to take steps “with a
view to achieving progressively the full realization of the rights recognized” in the
Covenant. The term “progressive realization” is often used to describe the intent of
this phrase. The concept of progressive realization constitutes a recognition of the
fact that full realization of all economic, social and cultural rights will generally not
be able to be achieved in a short period of time. In this sense the obligation differs
significantly from that contained in article 2 of the International Covenant on Civil
and Political Rights which embodies an immediate obligation to respect and ensure
all of the relevant rights. Nevertheless, the fact that realization over time, or in other
words progressively, is foreseen under the Covenant should not be misinterpreted as

2 Onora O’Neill, Towards Justice and Virtue:A Constructive Account of Practical Reasoning (CUP 1996) 131.

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depriving the obligation of all meaningful content. It is on the one hand a necessary
flexibility device, reflecting the realities of the real world and the difficulties involved
for any country in ensuring full realization of economic, social and cultural rights. On
the other hand, the phrase must be read in the light of the overall objective, indeed the
raison d’être, of the Covenant which is to establish clear obligations for States parties
in respect of the full realization of the rights in question.3

To qualify a certain duty in the category of progressive realisation does not – and should not –
deplete it of content and force. Quite the contrary, its progressive realisation allows for flexibility,
as stated in General Comment 3, which is necessary for and conducive to a feasible full realisation
of the duty.True, the full realisation of this duty is somehow delayed in time. However, its full
realisation is still required, and the reason why it is (or has to be) delayed is the fact that there are
real-world constraints in resources and other practical contingencies that impede the immedi-
ate full realisation of all duties correlated to ESCR, such as the right to health.4 Although delay
is somehow justified, state parties to the ICESCR cannot delay the full realisation of ESCR
indefinitely, and progress combined with non-regression ought to be demonstrated periodically.5

Duties of immediate realisation: minimum core obligations of conduct

In addition to duties of progressive realisation, General Comment 3 also establishes certain duties
of immediate effect correlated to ESCR, also called ‘minimum core’ obligations. Chapman has
highlighted the immediacy component of minimum core obligations.6 She argues that the mini-
mum core obligations should be primarily interpreted as obligations of conduct (to be immedi-
ately implemented), rather than obligations of results (to be progressively implemented).7 Hunt,
the former special rapporteur on the right to health, echoes Chapman’s conception in his latest
report:

the right to health imposes overlapping obligations of immediate effect on States.They

include (…) the core obligation to ensure the minimum essential levels of the right.
Immediate obligations are outside the ambit of the article 2(1) of the ICESCR. Core

3 UN Committee on Economic, Social and Cultural Rights, General Comment 3 – ‘The Nature of State Parties’
Obligations’ 14 December 1990 (UN Doc UN E/1991/23) (emphasis added).
4 I have put this argument forth in Thana C de Campos,‘Justice and Responsibility: A Deontological Approach to
Medical Law’ in A Philips,T C de Campos, and J Herring, Philosophical Foundations of Medical Law (OUP 2019) 97.
5 Take, for example, the Universal Period Review undertaken by the UN Human Rights Council. It provides the
opportunity for each state to disclose the steps they have taken to improve the situations of both ESCR and CPR
in their countries in fulfilling their human rights obligations. See: www.ohchr.org/EN/HRBodies/UPR/Pages/
UPRMain.aspx
6 For a thorough discussion on the concept of minimum core obligations related to the human right to health,
see for example Lisa Forman, Luljeta Caraoshi, Audrey R Chapman, and Everaldo Lamprea, ‘Conceptualizing
Minimum Core Obligations under the Right to Health: How Should We Define and Implement the “Morality of
the Depths”’(2016) 20(4) The International Journal of Human Rights 531–48.
7 Audrey R Chapman,‘Core Obligations Related to the Right to Health’ in Audrey R Chapman and Sage Russell
(eds), Core Obligations: Building a Framework for Economic, Social and Cultural Rights (Intersentia 2002) 185–215
(emphasis added). For a contrary view, see for example Katherine G Young,‘The Minimum Core of Economic and
Social Rights:A Concept in Search of Content’ (2008) 33 Yale Journal of International Law 117–18.

65
 Thana C de Campos-Rudinsky

obligations are the minimum essential level of a right and are not progressively real-
ized.8

In a similar vein, Tasioulas defines the minimum core obligations as the sub-set of obligations
associated with socio-economic rights that must be immediately complied with in full (obliga-
tions of ‘immediate effect’) and hence to which the doctrine of progressive realisation is inappli-
cable.9 Tasioulas adds that there are three elements of minimum core obligations:‘(a) immediacy:
they demand immediate compliance, (b) completeness: they must be fully complied with at any
given time, and (c) universality: they bind all states (presumably all state parties to the Covenant)
irrespective of variations in wealth and other resources.’10
While these right-to-health scholars have centred their conceptualisation of minimum core
obligations around the idea of immediacy, paragraph 10 of General Comment 3 establishes a
test that would help determine if a state cannot feasibly meet the minimum core requirement
immediately.This test involves the state demonstrating ‘that every effort has been made to use all
resources that are at its disposition in an effort to satisfy, as a matter of priority, those minimum
obligations.’11
There are two main purposes in defining the minimum core obligation. First, the theoreti-
cal purpose is to establish the minimum essentials of what constitutes each ESCR (such as the
human right to health). These minimum essentials ought to be realised immediately and as a
matter of priority.When it comes to the human right to health in particular, General Comment
3 establishes that its minimum core obligations are ‘essential primary health care.’12 Second, the
practical purpose of distinguishing the minimum core obligations (to be immediately realised, as
a matter of priority) from the remaining duties of progressive realization is feasibility.The doctrine
of the minimum core obligation aims at practicality, by helping define immediate priorities in
the process of allocation of scarce resources. Both theoretical and practical purposes of distin-
guishing minimum core obligations from the remaining duties of progressive realisation are
key in regard to human right to health, because healthcare resources are especially scarce and
many practical contingencies (such as the lack of sufficiently available, accessible, acceptable, and
appropriate medical treatments worldwide)13 apply.14

The confation problem

Although theoretically and practically justified, the distinction between duties of progressive
realisation and duties of immediate realisation is not sufficiently clear in the context of the
human right to health. General Comment 14 (on ‘The Right to the Highest Attainable Standard
of Health’) has a special section, comprising paragraphs 43 and 44, dedicated to defining ‘core
obligations.’ These paragraphs should arguably specify the minimum core of the human right
to health, by further defining what ‘essential primary health care,’ as first mentioned in General

8 Paul Hunt, ‘The Right of Everyone to the Enjoyment of the Highest Attainable Standard of Health’ 11 August
2014 (UN Doc A/69/150), para 10).
9 John Tasioulas, The Minimum Core of the Right to Health (World Bank 2017) 1.
10 ibid 12.
11 UN Committee (n 3) para10.
12 ibid.
13 OHCHR and WHO, The Right to Health – Fact Sheet No. 31, 4.Available at: www.ohchr.org/Documents/Public
ations/Factsheet31.pdf accessed 12 November 2020.
14 de Campos (n 4) 99.

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Comment 3, means. One would therefore expect paragraphs 43 and 44 to more precisely
define which health-related core obligations should immediately be realised as a matter of priority.
However, instead of explaining the content of the core duties and their duty-bearers, paragraphs
43 and 44 merely repeat some possible items or components of a right to essential primary health
care.15
Paragraph 43 merely lists several items comprising the minimal essential of healthcare provi-
sion.These include, inter alia: ‘right of access to health facilities, goods and services on a non-
discriminatory basis, especially for vulnerable or marginalized groups; (…) access to minimum
essential food; (…) access to basic shelter, housing, sanitation, and potable water.’16 In trying to
specify what ‘essential primary health care’ means, paragraph 43 of General Comment 14 lists
some components of what constitutes the minimal essential of healthcare provision. Some of
them, like essential food and basic shelter, are not exclusive components of the right to health.
They are components of other human rights as well, like the right to food and the right to
housing. On the one hand this is understandable, since all human rights are interdependent and
the realisation of one specific human right depends on the realisation of the other human rights.
On the other hand, this conceptualisation of the right to health as the most fundamental of all
human rights – meaning the human right on which all other human rights depend – causes
confusion. Although the right to health is a basic human right, all other human rights cannot
be simply reduced to the right to health, because they often need to be addressed in particular
ways. Health, housing, and potable water are certainly interrelated, and equally basic. But they
ground separate rights that require specific duties. So, the conflation of these rights in paragraph
43 of the General Comment 14 causes confusion about what needs to be done first in order to
feasibly attain health. Paragraph 43 is silent about who has the duty to do what.
Similarly, paragraph 44 goes on to simply list several other items of ‘comparable priori-
ty’17 within the context of a right to essential primary health care.These include, for example:
‘reproductive, maternal (pre-natal as well as postnatal) and child health care; (…) immunisa-
tions against major infectious diseases (…); measures to prevent, treat and control epidemic
and endemic diseases; (…) education and access to information; (…) education on health and
human rights.’18 While the first three items on the list are components of the right to health, the
last two items on the list could be claimed as components of a separate human rights, namely
the right to education. This conflation, again, leads to confusion about what should be done
immediately and as a matter of priority, as well as what can be feasibly done. Here again paragraph
44 is silent about the duties and duty-bearers.
The lists displayed in paragraphs 43 and 44 of General Comment 14, containing some items
of what would constitute ‘essential primary health care,’ are troublesome for several reasons.
First, and as already mentioned, the conflation of different rights that, in reality, require differ-
ent duties, are all reduced to the right to health.This conflation leads to confusion about what
should really be immediately and feasibly prioritised in a context of scarce resources.
Secondly, the minimum core obligations, which should have been specified in paragraphs
43 and 44, are not given any helpful specification, since these two paragraphs simply list certain
components of the right to health or other human rights. Nothing substantial is said about the

15 ibid.
16 United Nations Committee on Economic, Social and Cultural Rights, General Comment 14 – ‘The Right to the
Highest Attainable Standard of Health’ 11 August 2000 (UN Doc E/C.12/200/4), para 43 (a)–(c).
17 ibid para 44.
18 ibid para 44 (a)–(e).

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 Thana C de Campos-Rudinsky

core duties that correspond to the right to health.As O’Neill puts it,‘obligations have to specify
not only what is to be accorded, but which obligation-bearers are going to have to do what
for whom and at what cost.’19 And the lists provided in paragraphs 43 and 44 say very little – if
anything – about the minimum core obligations spurring from the human right to health.20 The
lists say nothing about the key conditions for the immediate priority or feasibility of minimum
core duties. Although paragraphs 43 and 44 are under the title ‘core obligations’ in General
Comment 14, their focus is not on the immediate priority and the feasibility of these obligations.
Instead of specifying obligation, the focus in these paragraphs is actually on rights – more pre-
cisely on the claim-rights that a right to essential primary health care allegedly entails. These
claim-rights are the entitlements that victims of the violations of said right are supposed to
receive.21 Nothing is articulated about the specific duties and the specific duty-bearers. Neither
the immediacy question nor the feasibility question is addressed. In short, the fact that paragraphs
43 and 44 (which were supposed to explain (i) what is to be accorded as ‘core obligations,’ and
(ii) which duty-bearers should do what for whom and for what cost) merely provide a list of
claim-rights to be demanded as entitlements related to right to health.
Third, these claim-rights that paragraphs 43 and 44 of General Comment 14 demand of state
parties are overly burdensome, which renders any possible obligation that they might ground
unfeasible.This defeats the two main purposes of the minimum core obligations, namely (i) the
theoretical purpose to establish the minimum essentials that ought to be realised immediately and
as a matter of priority, and (ii) the practical purpose of feasibility.As Tasioulas puts it:‘These [claim-
rights] seem overly demanding to be feasibly conceived as obligations of immediate effect
incumbent on all states, especially on an invariant reading of the Minimum Core Doctrine.’22 In
a similar vein,Tobin argues that

the vision of the minimum core obligations of states under the right to health, as
advanced by the ESC Committee, is dissociated from the capacity of states to realize this
vision. It simply does not offer a principled, practical, or coherent rationale which is suf-
ficiently sensitive to the context in which the right to health must be operationalized.23

In summary, this section has provided a conceptual analysis of the ‘duties of progressive realisa-
tion’ and ‘duties of immediate realisation’ in the context of the human right to health. I have
explained how their difference is obscured, by way of conflation with other rights.This defeats
the purpose of the distinction. In the next section, I will investigate whether this conflation
problem between these two types of duties that originated in international human rights docu-
ments is transmitted to regional human rights instruments and regimes. My analysis will focus
on the IACHR system.

The confation problem in the IACHR jurisprudence

The human rights protection mechanism of the OAS is composed of the Inter-American
Commission on Human Rights (IAcHR) and the Inter-American Court of Human Rights

19 Onora O’Neill, Bounds of Justice (CUP 2000) 97, 100.

20 de Campos (n 4) 99.
21 ibid.
22 Tasioulas (n 9) 8.
23 John Tobin, The Right to Health in International Law (OUP 2012) 340.

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(IACHR or the Court).The latter, on which I will focus my analysis, is tasked with the mandate
to (i) adjudicate cases of OAS member states human rights violations, and (ii) to advise OAS
member states on legal interpretations related to those human rights violations. Importantly, the
IACHR rules on whether an OAS member state is guilty of human rights violation: the Court
does not rule on whether individuals are guilty of human rights violation.
The IACHR has discussed state violations of the human right to health in several cases.
There is, in fact, a significant body of jurisprudence on the right to health.24 This jurisprudence
has interpreted the human right to health, by ‘deriving’25 it from the legal instruments of several
bodies:

• the international level (e.g. the 1948 Universal Declaration of Human Rights [art 25.1]; the
1966 ICESCR [art 12]; the 2000 General Comment 14);
• the regional level (e.g. the 1948 Charter of the OAS, the 1948 American Declaration of
Rights and Duties of Man/Bogota Declaration [art XI]; the 1969 American Convention of
Human Rights/Pact of San Jose [art 26]; and the 1988 Additional Protocol to the American
Convention on Human Rights in the Area of ESCR/Protocol of San Salvador Protocol
[art 10]); and
• the national level (e.g. various OAS member states have established the human right to
health as a constitutional right, including Argentina, Barbados, Bolivia, Brazil, Colombia,
Costa Rica, Ecuador, El Salvador, Guatemala, Haití, Honduras, Mexico, Nicaragua, Panamá,
Paraguay, Perú, Dominican Republican, Surinam, Uruguay, and Venezuela).26

Through the interpretation and application of these international, regional, and national legal
instruments to the cases brought to the IACHR, it has established the human right to health as
an ‘autonomous right,’27 which grounds state duties.The most thorough discussion of these state
duties is found in the 2018 Cuscul Pivaral et al. v Guatemala case.

2018 Cuscul Pivaral et al. v Guatemala

In this case, the state of Guatemala was found guilty of violating the human right to health of
49 HIV patients, by way of state omission. More specifically, Guatemala was condemned for
inaction in not discharging the duties of progressive realisation of this vulnerable population’s
right to health, violating Article 26 of the American Convention of Human Rights/Pact of San
Jose.28 In order to explain what these state duties consist of, the IACHR recalled, in paragraph
141 of the decision, that there are two types of duties applicable to the human right to health,

24 OAS IACHR, Cuadernillo de Jurisprudencia de La Corte Interamericana de Derechos Humanos N. 28: Derecho a La
Salud, San Jose, Costa Rica, 2020.
25 OAS IACHR, Poblete Vilches y otros v Chile, 2018.
26 ibid.
27 OAS IACHR Poblete Vilches y otros v Chile, 2018; Cuscul Pivaral y otros v Guatemala, 2018; and Hernández v
Argentina, 2019.
28 American Convention of Human Rights/Pact of San Jose,Article 26 Progressive Development:
The States Parties undertake to adopt measures, both internally and through international coopera-
tion, especially those of an economic and technical nature, with a view to achieving progressively, by
legislation or other appropriate means, the full realisation of the rights implicit in the economic, social,
educational, scientific, and cultural standards set forth in the Charter of the Organization of American
States.

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 Thana C de Campos-Rudinsky

namely the duties of immediate realisation and the duties of progressive realisation.The progres-
sive character of the latter, which the IACHR highlighted referring back to Article 26 of the
American Convention of Human Rights/Pact of San Jose, has the purpose of offering flexibility
to states so that they can feasibly attain the full realization of ESCR (such as the right to health)
over time. In doing so, the IACHR clearly (though not explicitly) echoes the understanding
of General Comment 3 of the UN Committee on Economic, Social and Cultural Rights, dis-
cussed earlier, according to which the two purposes of the duties progressive realisation are (i)
definition of immediate priorities and (ii) feasibility.
In elaborating on the concept of flexibility as the key feature of duties of progressive reali-
sation and obligations of result, the IACHR clarifies that there is no particular time frame to
achieve such result.29 Neither is there a specific means of attaining such a result.30 States have,
therefore, leeway to decide which steps to take and when to take them towards full realisation
of ESCR, depending on their economic reality and other practical contingencies.31 However,
the IACHR reiterates that, in being an obligation of result, the duties of progressive realisa-
tion necessitate that something is in fact done.32 Action, in other words, is required; inaction is
prohibited.33 And this action ought to be continually executed.34 That is to say, non-regression
is obligatory.35
In placing the state in a ‘special position of guarantor with greater care and responsibility,’36
it seems that the IACHR convicted the state of Guatemala for not discharging its duty to care
for the vulnerable HIV population under its jurisdiction. By care, here, I mean a twofold duty,
encompassing: (i) an action of care for the vulnerable under the state’s jurisdiction – a continually
executed action, to be more precise; and (ii) a conduct of care to be immediately implemented
as a priority. In this way, I am conceptualising duty of care here in general terms, as entailing
(i) an obligation of result, to be progressively realised, and (ii) an obligation of conduct, to be
immediately realised.While the former allows flexibility (in being contingent to economic and
political circumstances), the latter does not (in demanding a clear definition of the immediate
priorities of care and the feasibility of such care). Presumably, the former, in being more costly
in its execution, can be justifiably delayed, whereas the latter cannot accommodate excuses.
Although the 2018 Cuscul Pivaral et al. v Guatemala decision does not explicitly use the term
‘duty of care’ in the specific sense that I am using it, the decision did aim at discussing the
state obligations for ‘caring for people living with HIV.’37 So, my definition of ‘duty of care’ is
reflected in this decision. In finding Guatemala internationally responsible for failing to provide
the appropriate care for their most vulnerable HIV populations, the IACHR charged Guatemala
with three main obligations of result, all of which to be gradually executed, viz. (i) duty to regulate
and supervise local healthcare institutions, (ii) duty to educate their population on health and human rights
matters, and (iii) duty to provide access to HIV testing and medical treatment for their HIV population.

29 OAS IACHR, Poblete Vilches y otros v Chile, 2018, para 142.

30 ibid para 142.
31 ibid para 147.
32 ibid para 142.
33 ibid para 146.
34 ibid para 146.
35 ibid para 143.
36 ibid para 132.
37 ibid para 147.

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 Inter-American Court of Human Rights

First, the IACHR determined that Guatemala has a duty to regulate and supervise local healthcare
institutions. The Court established that Guatemala should discharge this obligation by focusing
on attaining three main results:

(a) Not only to implement the legislative measures and public policies that Guatemala had
already adopted to combat the HIV epidemic,38 but also to implement effective mecha-
nisms for periodic supervision and monitoring of its public hospitals to ensure that they
are providing comprehensive healthcare to people living with HIV, in keeping with both
domestic and international laws.39
(b) To set up an information system on the scope of their HIV epidemic.40 The Court further
defined such system thus: it should contain statistical information on the patients (including
their sex, age, ethnicity, language and socio-economic status of patients), and on the local
healthcare institutions (including their geographical location and infrastructure).41
(c) To design a mechanism to ensure the accessibility, availability, and quality of antiretroviral
drugs, diagnostic tests, and health services for people living with HIV.42

Second, the IACHR determined that Guatemala has a duty to educate their population and provide
access to information on health and human rights matters. The Court established that Guatemala
should discharge this obligation by focusing on attaining three main results:

(a) To implement a training program for health system officials who work in hospitals and
healthcare centres that treat people with HIV in Guatemala.This would serve the purpose
of educating officials about the international standards and domestic laws regarding people
living with HIV.43
(b) To design a publication or a booklet on HIV transmission and prevention.44
(c) To conduct a national awareness-raising campaign, aimed at combating the stigma as well
as lack of information about the people living with HIV.45

Third, the IACHR determined that Guatemala has a duty to provide access to HIV testing and medi-
cal treatment for their HIV population.The Court established that Guatemala should discharge this
obligation by focusing on attaining two main results:

(a) To provide periodic monitoring for pregnant women living with HIV, coupled with ade-
quate HIV testing and medical treatment to avoid vertical transmission of the virus.46
(b) To directly provide medical treatment to ensure the right to health of the HIV population,
rather than entrusting their care to non-governmental organisations.47

38 ibid para 224.

39 ibid para 225.
40 ibid para 225.
41 ibid para 225.
42 ibid para 226.
43 ibid para 227.
44 ibid para 228.
45 ibid para 229.
46 ibid para 228.
47 ibid para 147.

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 Thana C de Campos-Rudinsky

The IACHR defines all of these as duties of progressive realisation. The Court determined
specific results that Guatemala should execute over time. In other words, for the IACHR, (i) the
duty to regulate and supervise local healthcare institutions, (ii) the duty to educate their population on health
and human rights matters, and (iii) the duty to provide access to HIV testing and medical treatment for their
HIV population are all duties of progressive realisation or obligations of result. But should all of
them be so classified? Would some of them not fall under the category of duties of immediate
realisation or obligations of conduct?
In order to answer this question, it is worth returning to the distinction between duties of
immediate realisation and duties of progressive realisation.The division between the two types
of state duties, has been, as argued earlier in the chapter, blurred: there is a conflation problem.
The difference in scope between duties of progressive realisation and duties of immediate reali-
sation is not sufficiently clear in the international legal context of the human right to health. A
further investigation of the traditional distinction between obligations of conduct and obliga-
tions of result might be helpful here.
Originally a Roman law concept, the idea of obligations of conduct (or means) and obliga-
tions of result is typical of civil law systems. This concept was introduced to international law
and has been discussed by both Roberto Ago and James Crawford, special rapporteurs for the
International Law Commission on State Responsibility.48 Accordingly, there are two kinds of
international obligations: state’s obligations of conducts (or means) and state’s obligations of
result. The typical example of obligations of conduct in Roman law is the debtor, who, as a
duty-bearer, promises to use all the possible means and to exercise the necessary diligence to
perform the contractual obligation.49 Here the duty-bearer does not commit to performing the
contractual obligation per se.That is, the duty-bearer does not commit to achieving a particular
result. Instead, the content of his promise is in taking all necessary measures and all appropri-
ate means, and doing all that is in his power. A healthcare-related example of an obligation of
conduct is the healthcare professional.50 She has an obligation (of conduct) to be diligent and to
do everything that is possible to cure the patient and to restore his health. However, the specific
result of cure and health are outside of the scope of the doctor’s obligation of conduct, because
the doctor cannot guarantee such desirable results.51 Obligations of result, on the other hand,
aim at a particular outcome to be delivered.The desired outcomes ought to be delivered, unless
a force majeure exception can justify the breach of the obligation.52
The IACHR, in the 2018 Cuscul Pivaral et al. v Guatemala decision, adjudicates that Guatemala
has three main international obligations to discharge: (i) the duty to regulate and supervise local
healthcare institutions, (ii) the duty to educate their population on health and human rights matters, and
(iii) the duty to provide access to HIV testing and medical treatment for their HIV population. For the
Court, these are all duties of progressive realisation or obligation of result, and the IACHR has
prescribed specific results to be attained by Guatemala under each of these three categories.
Although all of these three categories fall under the general theme of ‘duties of care,’ there are
significant theoretical and practical differences among them that should be clarified: first, not all

48 Constantin P Economides,‘Content of the Obligation: Obligations of Means and Obligations of Result’ in James
Crawford, Alain Pellet, Simon Olleson, Kate Parlett, The Law of International Responsibility (OUP 2010) ch 26,
371–81, 375.
49 ibid.
50 ibid.
51 ibid.
52 ibid.

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of them seem to fall under the obligations of result type; also, not all of them seem to belong to
those classes of duties grounded on the human rights to health.
Take the first category (i.e. the duty to regulate and supervise local healthcare institutions), for
example. The duty to regulate and supervise responds to the state inaction and lack of due
diligence. In this sense, it is an obligation of conduct: the state’s conduct (of regulating and
supervising local institutions) should be evaluated on the basis of whether or not it has taken all
necessary measures and all appropriate means, and it has done all that is in its power to regulate
and supervise local healthcare institutions. Accordingly, (a) implementing legislative measures
and public policies that Guatemala had already adopted to combat the HIV epidemic,53 and
implementing effective mechanisms for periodic supervision and monitoring of its public hos-
pitals to ensure that they are providing comprehensive health care to people living with HIV, in
keeping with both domestic and international laws54 qualifies as an obligation of conduct, and
should, therefore, be evaluated according to the criterion of due diligence. Similarly, (b) setting
up a statistical information system on the scope of its HIV epidemic55 is also an obligation of
conduct that should be evaluated according to Guatemala’s disposition to take all the necessary
measures to succeed, rather than to successful results themselves.Although the IACHR classifies
all of these as obligations of result, demanding therefore specific successful outcomes, it should
not be so. The Court not only creates confusion by conflating duties of immediate realisation
and duties of progressive realisation, but it also charges Guatemala with an unfeasible interna-
tional obligation to obtain successful results that are beyond Guatemala’s power and control.
Were these duties rightly classified as obligations of conduct, then Guatemala would be correctly
assessed according to its disposition and due diligence. However, in being classified as obligations
of result, Guatemala is assessed according to unpredictable standards of success.
Now, take the second category (i.e. the duty to educate their population on health and human
rights matters).This duty seems to more appropriately belong to the human right to education
than to the human right to health. As argued earlier in the chapter, the conflation of different
rights which, in reality, require different duties, is problematic in that it reduces different human
rights to the human right to health.This conflation leads, I suggested, to confusion about what
should really be immediately and feasibly prioritised in a context where resources to fully realise
all ESCR are scarce. An objector here may want to claim that it matters very little whether the
duty to educate a population on health and human rights should be theoretically linked to the right to
education or to the right to health.This theoretical grounding of the duty, my opponent would
argue, say nothing about the practicalities on whether or not this duty should be immediately
prioritised or not.This is a valid claim. In fact, if the practical purpose of duties of immediate
realisation is (as I have argued) feasibility, it might be less practically relevant to dispute whether
the duty to educate the population on health and human rights is based on the right to education or
on the right to health. However, the conflation problem, as I also argued, is a theoretical prob-
lem with tangible effects in real-world deliberations: the theoretical foundations of the duty to
educate the population on health and human rights (that is to say, whether it is based on the right to
education or on the right to health) will affect how and by whom the duty will be practically
discharged.This is because the scarce resources for the realisation of this duty will have to come
either from the right-to-education–related budget or the right-to-health–related budget. The
duty bearers of a right-to-education–based duty and the duty bearers of a right-to-health–based

53 ibid para 224.

54 ibid para 225.
55 ibid para 225.

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 Thana C de Campos-Rudinsky

duty are not exactly the same: although there is some overlap (i.e. the government generally
speaking), the civil society actors directly involved in the realisation of each of these rights will
be different.As an obligation of result, the duty to educate the population on health and human rights
is a duty of progressive realisation, shared among various social actors. Lack of clarity on whether
this duty is based on the right to education or on the right to health will cause practical con-
fusion about who is actually in charge of what to gradually execute this duty. The conflation
between different human rights and between different types of duties has therefore important
practical implications.
Last, take the third category (i.e. the duty to provide access to HIV testing and medical treatment for
their HIV population). Like the previous duty (i.e., the duty to educate the population), this duty is
also an obligation of result to be gradually executed with the participation of all in the society. It
is, in this sense, a shared co-responsibility of progressive realisation of certain results.The results
that the IACHR specified under the duty to provide access to HIV testing and medical treatment for
the HIV population were two: (a) the provision of periodic monitoring for pregnant women
living with HIV, as well as (b) the provision of adequate HIV testing and medical treatment
for other patients.56 The success of these results is contingent upon Guatemala’s economic and
political circumstances. This means that the Guatemalan society would have to be commonly
committed to achieving these goals, so that the IACHR could later more accurately assess the
compliance of the state of Guatemala against the criterion of Guatemala’s progress and non-
regression on the duty to provide access to HIV testing and medical treatment for their HIV population.
I have discussed so far in this section, the IACHR conviction of the state of Guatemala for
not discharging its duty to care for the vulnerable HIV population under its jurisdiction. I con-
ceptualised the duty of care here as a twofold duty, encompassing (i) an action of care for the
vulnerable under the state’s jurisdiction – a continually executed action, to be more precise; and
(ii) a conduct of care to be immediately implemented as a priority. I have, therefore, conceptu-
alised duty of care here in general terms, as a state duty entailing (i) an obligation of result, to be
progressively realised, and (ii) an obligation of conduct, to be immediately realised. And I have
demonstrated that, in the 2018 Cuscul Pivaral et al. v Guatemala decision, the IACHR conflates
these two different obligations and realities of care.This conflation problem has practical con-
sequences. It causes confusion in deliberating how the state of Guatemala is to discharge those
three specific duties of care (i.e., (i) duty to regulate and supervise local healthcare institutions, (ii) duty
to educate their population on health and human rights matters, and (iii) duty to provide access to HIV
testing and medical treatment for their HIV population).There is lack of certainty as to who exactly
in Guatemala should be in charge of each of these duties. It is also unclear how the IACHR is
to justly assess Guatemala’s progress or failure in relation to the realisation of these three duties
in particular, and the right to health in general.
Although my idea of states’ duty to care for the vulnerable patients under their jurisdiction
is certainly central in human right-to-health litigations, the exact term ‘duty to care’ is not
typical in the global health rights literature.There is, however, one recent IACHR case where
the term ‘duty to take care’ is explicitly used in the context of the right to health. Next I will
analyse the 2006 Ximenes Lopes v Brazil as to how it interprets the Brazilian state’s duty to take
care of its vulnerable mental health patients. I have constructed my interpretation of states’ duty
of care so far in general terms, following the ethics of care literature here in interpreting care
broadly.57 I will also further specify what the state’s duty of care, encompassing both obligations

56 ibid para 228.

57 In the Ethics of Care tradition, see for example, Jonathan Herring, Caring and the Law (Hart 2013).

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of immediate conduct and obligations of progressive results, means in the context of the human
right to health.

2006 Ximenes Lopes v Brazil

On 1 October 1999, Damião Ximenes Lopes, a 30-year-old patient suffering a severe mental con-
dition, was admitted to the psychiatric clinic Guararapes Rest House.This clinic provided health-
care for patients eligible under Brazil’s public healthcare system, known as the Unified Health
System (or Sistema Unico de Saude [SUS]). On the day of admission, Ximenes Lopes showed no
signs of bodily injury. However, only three days later, on 4 October, Ximenes Lopes was found
with several signs of grave injuries: he was bleeding, had bruises all over his body, had his hands tied
back, showed difficulty in breathing, and was wearing torn clothes with excrement on them.The
clinic explained that Ximenes Lopes had an episode of aggressive attack and had to be subjected
to physical restraint by the healthcare personnel as a matter of security. Ximenes Lopes was found
dead on the same day, 4 October, approximately two hours after being medicated by the director
of the clinic. No medical assistance was provided to Ximenes Lopes before its death. Although
his relatives filed a criminal charge as well a civil complaint for damages against the owner of the
psychiatric clinic, no further investigations were carried out. The case was then brought to the
Inter-American Commission on Human Rights and later to the IACHR’s attention.
In its final decision, the IACHR established that states have two main duties regarding
patients with mental illnesses: (i) the duty to take care; and (ii) the duty to regulate, supervise, and
investigate healthcare institutions.
The IACHR explained the duty to take care in terms of the state’s ‘special position as guarantor in
regard to persons who are in its custody or under its care.’58 That is to say, because of states’ special
position or mandate, they have the duty to take care of all those entrusted to them. Not much
more is said about state’s duty to take care, except that it is a ‘positive duty to provide the neces-
sary conditions to lead a decent life.’59 This positive duty applies particularly in relation to ‘persons
who are under health treatment,’60 given their particular vulnerability.Among these individuals, the
positive duty to take care applies in an even more stringent way to ‘patients with mental illness,
given their [greater] vulnerability when they are admitted to psychiatric institutions.’ 61
Nothing is said about the nature of this ‘duty to take care.’ The IACHR does not define
whether it is an obligation of conduct or an obligation of result. Neither does it mention how
immediately or progressively the state is to discharge this ‘duty to take care.’This underspecified
discussion of the ‘duty to take care’ can perhaps be further refined by an analysis of the Court’s
discussion of the duty to regulate, supervise, and investigate, which applies to both private and public
institutions providing healthcare services.62
The duty to regulate, supervise, and investigate can be interpreted in the 2006 Ximenes Lopes v
Brazil case as a specific way in which the state can care for vulnerable populations.The state is
uniquely placed to provide regulation, supervision, and investigation mechanisms. By regulating,
supervising, and investigating healthcare institutions, the state ultimately guarantees not only

58 OAS IACHR, Ximenes Lopes v Brazil Case, 2006, para 138.

59 ibid para 138.
60 ibid para 139.
61 ibid para 140. On the greater vulnerability of psychiatric patients, see also para 106.
62 ibid para 90, 141.

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 Thana C de Campos-Rudinsky

that patients are adequately treated, but also that healthcare institutions ‘provide the necessary
conditions [for patients] to lead a decent life.’63
The IACHR specifies the duty to regulate, supervise and investigate as follows. It includes, inter
alia, (a) an obligation to create an appropriate legal framework, defining the standards of health-
care treatment and hospitalisation, against which healthcare institutions are to be scrutinised;64
and (b) an obligation to create mechanisms for inspection, which both investigate and solve
complaints, by taking appropriate disciplinary or judicial actions related to professional miscon-
duct or violation of a patient’s right.65 More precisely, the latter consists of an obligation to adopt
health surveillance measures,‘understood as a set of policies aimed at preventing health risks and
taking action to control and monitor healthcare services, products, and substances.’66
Although it seems that the IACHR qualifies these duties and obligations as progressive
duties, whose results are to be gradually executed by the state of Brazil, it would be more accu-
rate, I contend, to qualify them as duties of immediate realisation or obligations of conduct.
This is because the IACHR is in actuality requiring the state of Brazil to take all appropriate
means to care for psychiatric patients, by doing all that is in its power to regulate, supervise, and
investigate healthcare institutions. In this sense, the state of Brazil should, I suggest, be assessed
against its due diligence in complying with the IACHR directives regarding the creation of
(a) an appropriate normative framework, and (b) appropriate accountability, transparency, and
information-sharing mechanisms to both scrutinise and assist healthcare institutions directly
entrusted with the care of patients.
The state is uniquely placed to discharge its duty to regulate, supervise, and investigate local
healthcare institutions (private and public alike). Also, the conduct of regulation, supervision,
and investigation of local institutions is prima facie and ceteris paribus less contingent upon a large
allocation of resources, compared to the full realisation of the right to health (as an adequate
standard of physical, mental, and social well-being for all). Therefore, the conduct of regu-
lation, supervision, and investigation can and should be immediately implemented by states.
Conversely, the duty to directly care for patients by striving to achieve adequate standards of
physical, mental, and social well-being for all cannot be a duty of immediate realisation. Its pro-
gressive nature necessitates time, effort, and resources. In fact, the achievement of such a result
(i.e. the full realisation of the right to health for all individuals) could only be achieved through
a shared, collective enterprise.The state alone cannot feasibly achieve such a goal. For this rea-
son, the duty of progressive realisation of the right to health is more accurately conceptualised, I
contend, as a co-responsibility, shared by states, healthcare institutions, and other actors (such as
civil society organizations, churches, neighbours, and families).This progressive duty is shared by
all in a certain society because it depends on a shared intention to allocate a significant amount
of time, effort, and resources to its realisation.
To summarise, states, healthcare institutions, and other actors share a general duty to care
for vulnerable patients. While states care for patients by discharging their immediate duty to
regulate, supervise, and investigate healthcare institutions under their jurisdiction, healthcare
institutions – in cooperation with states and others actors – care for patients by discharging their
progressive duty to gradually achieve the result of adequate standards of physical, mental, and
social well-being for all patients entrusted to their care.This proposed interpretation of a social

63 ibid para 138.

64 ibid para 98.
65 ibid para 99.
66 ibid para 142.

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co-responsibility to care for vulnerable patients, including the state’s immediate duties and the
whole community’s shared progressive duties, is practically reasonable. It presents a feasible plan
of action for the realisation of the human right to health, by more clearly differentiating differ-
ent duties and realities of health that had been conflated and obscured in legislations and courts’
interpretations. My proposed interpretation differentiates, on the one hand, between those
immediate, minimum core priorities (e.g., the specific obligations contained under the category
the duty to regulate, supervise and investigate), and on the other hand, the remaining duties of care
that cannot be implemented immediately, given that they are more contingencies-dependent.

Conclusion
This chapter has first provided a conceptual analysis of the duties of immediate and progressive
realisation, explaining how they create what I have called ‘the conflation problem.’ Then, to
examine how this conflation problem, which originated in international human rights docu-
ments, has been passed on to regional human rights instruments and regimes, the chapter intro-
duced two IACHR cases (i.e. 2018 Cuscul Pivaral et al. v Guatemala and 2006 Ximenes Lopes v
Brazil).Their close analysis demonstrated that the IACHR perpetuates the conflation problem
between immediate and progressive duties, and this conflation problem has serious practical
implications.
The analysis of key global health rights instruments (i.e. the ICESCR and the General
Comments 3 and 14 of the United Nations Committee on Economic, Social and Cultural
Rights), coupled with the analysis of the IACHR case law on global health rights showed that
neither the instruments nor the case law support the actual realisation of the right to health.
More specifically, by causing practical confusion in political deliberation and legal adjudica-
tion, the conflation problem hinders the feasible realisation of the right to health in the global
context.
The outcome of this critical examination was the suggestion of a more specific interpreta-
tion of the duties of immediate realisation (i.e. minimum core obligations of the right to health)
within the OAS reality and considering the IACHR precedents. I argued that one specific duty
of immediate realisation that all OAS state members should bear is the duty to care for the most
vulnerable within their jurisdiction, through adequate regulation, supervision, and investiga-
tion of local healthcare institutions, private and public alike. I contended that this should be
interpreted as an obligation of conduct and therefore a duty of immediate (rather than progres-
sive) realisation. More specifically, this obligation of conduct (or duty of immediate realisation)
should entail the state’s duty to design a normative framework to create accountability, transpar-
ency, and information-sharing mechanisms to scrutinise and assist healthcare institutions directly
entrusted with the care of patients.The proposed specification of the minimum core obligations
of the right to health within the OAS reality and considering the IACHR precedents is relevant
not only to those interested in the human right protection mechanism of the OAS, but also to
those interested in global health rights in general, because it provides insights on how the con-
flation problem has been perpetuated in different jurisdictions and how the duties of immediate
realisation, though universal, can also be tailored according to the realities of each legal context.

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 Thana C de Campos-Rudinsky

de Campos,Thana C,‘Justice and Responsibility:A Deontological Approach to Medical Law’ in A Philips,

T C de Campos, and J Herring, Philosophical Foundations of Medical Law (Oxford University Press 2019).
Economides, Constantin P, ‘Content of the Obligation: Obligations of Means and Obligations of Result’
in James Crawford, Alain Pellet, Simon Olleson, and Kate Parlett, The Law of International Responsibility
(Oxford University Press 2010).
Forman, Lisa, Caraoshi, Luljeta, Chapman, Audrey R, and Lamprea, Everaldo,‘Conceptualizing Minimum
Core Obligations under the Right to Health: How Should We Define and Implement the “Morality of
the Depths”’(2016) 20(4) The International Journal of Human Rights 531–48.
Hunt, Paul, ‘The Right of Everyone to the Enjoyment of the Highest Attainable Standard of Health’ 11
August 2014 (UN Doc A/69/150).
OHCHR and WHO, ‘The Right to Health – Fact Sheet No. 31’ 4 www.ohchr.org/Documents/Public
ations/Factsheet31.pdf accessed 12 November 2020.
O’Neill, Onora, Towards Justice and Virtue:A Constructive Account of Practical Reasoning (Cambridge University
Press 1996).
O’Neill, Onora, Bounds of Justice (Cambridge University Press 2000).
Tasioulas, John, The Minimum Core of the Right to Health (World Bank 2017).
Tobin, John, The Right to Health in International Law (Oxford University Press 2012).
UN Committee on Economic, Social and Cultural Rights, ‘General Comment 3 – “The Nature of State
Parties” Obligations’ 14 December 1990 (UN Doc UN E/1991/23).
United Nations Committee on Economic, Social and Cultural Rights, ‘General Comment 14 – ‘The
Right to the Highest Attainable Standard of Health’ 11 August 2000 (UN Doc E/C.12/200/4).
Young, Katherine G, ‘The Minimum Core of Economic and Social Rights: A Concept in Search of
Content’ (2008) 33 Yale Journal of International Law 117–18.

78
 PART B

Health Rights across the temporal

stages in specifc countries
Beginning of life and children
 6
ASSISTED REPRODUCTIVE
TECHNOLOGIES IN UGANDA
Law and practice

Zahara Nampewo

Reproduction, infertility, and ART: a snapshot of Africa and beyond

It is the desire of many couples the world over to marry and found a family.This desire is signifi-
cant and has received international recognition and protection as a human right.The Universal
Declaration of Human Rights 1948 in Article 16 indicates that men and women of full age,
without any limitation due to race, nationality, or religion, have the right to marry and found
a family.1 This principle is reflected in Article 31 of Uganda’s constitution. However, it is not
always possible for healthy adults to reproduce at the time when they choose to, resulting in a
situation of involuntary childlessness.2 This is mostly due to infertility, a disease of the reproduc-
tive system defined by the failure to achieve a clinical pregnancy after 12 months or more of reg-
ular unprotected sexual intercourse.3 Infertility is recognised by the World Health Organization
(WHO) as a disease and as a disability because of its potential to impair reproductive function.4
The main causes of infertility are blockage of the fallopian tube (tubal stenosis) in women
and sperm duct (oligoasthenospermia) in men.5 These two conditions are primary consequences

1 Article 16 Universal Declaration of Human Rights, Article 23(2) International Covenant on Civil and Political
Rights, General Comment No 5. See also other references in Article 8(1) European Convention for the Protection
of Human Rights and Fundamental Freedoms, Article 18 African Charter on Human and Peoples Rights, and
Article 16(1)(e) of the UN Convention on Elimination of all Forms of Discrimination against Women.
2 Involuntary childlessness is the inability to fulfil the desire to have a biologically related child. Such physical
inability can be caused by one’s reproductive dysfunction (e.g. low sperm count or blocked fallopian tubes) or the
reproductive dysfunction of one’s partner.
3 F Zegers-Hochschild et al., ‘International Committee for Monitoring Assisted Reproductive Technology
(ICMART) and the World Health Organization (WHO) Revised Glossary of ART Terminology’ (2009) 92(5)
Fertility and Sterility. Here, infertility is defined to include infecundity, meaning the inability to conceive or to
impregnate, and pregnancy wastage, meaning failure to carry a pregnancy to term through spontaneous abor-
tion and still birth. See also Ibraheem O Tajudeen, ‘The Need for Legal Regulation of Assisted Reproductive
Technology in Nigeria’ (2014) 20(1) East African Journal of Peace and Human Rights 155.
4 WHO, Sexual and Reproductive Health (WHO 2020) www.who.int/reproductivehealth accessed 14 October 2020.
5 Gwet-Bell et al.,‘The 5 Main Challenges Faced in Infertility Care in Cameroon’ (2018) 3(16) Global Reproductive
Health Journal. www.gieraf.org/assets/images/article_39/01The_5_main_challenges_faced_in_infertility_care_
in.99986.pdf accessed 14 October 2020.

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 Zahara Nampewo

of infections, largely due to sexually transmitted diseases. In Uganda, about 10%–15% of couples
cannot have children due to infertility.6
Reproductive advancements are now well recognised throughout the world. The WHO
defines assisted reproductive technology (ART) as all treatments or procedures that include the
in vitro handling of both human oocytes, sperm, and embryos for the purpose of establishing
a pregnancy.7 ART methods include but are not limited to in vitro fertilisation (IVF), embryo
transfer, gamete intrafallopian transfer, zygote intrafallopian transfer, intracytoplasmic sperm
injection, tubal embryo transfer, gamete and embryo cryopreservation, oocyte and embryo
donation, and gestational surrogacy. Today, globally, almost two million ART cycles are per-
formed every year and nearly four million babies have been born through this assisted reproduc-
tion technique.8
ART has received support as a human right through law: courts across the world have sought
to protect this right in different but interesting ways. In Dickson v United Kingdom,9 the European
Court of Human Rights found that a person’s right to use artificial insemination falls within
the ambit of Article 8 of the European Convention on Human Rights, which protects the right
to respect for family and private life.The courts have further interpreted this right expansively.
A 2007 case before the European Court of Human Rights, Evans v the United Kingdom,10 asserts
that the right to reproduce includes both coital and non-coital means of reproduction. Courts
have further emphasised this right to include respect for decisions on whether persons intend to
become or not to become parents.11 In the United States, infertility is taken very seriously and is
considered a major life activity and, therefore, a disability under the Americans with Disabilities
Act.12
On the African continent, there is limited legal attention to ART. South Africa’s jurispru-
dence includes, for example, the case of AB v Minister of Social Development,13 where an applicant
sought an order declaring a section of the Children’s Act inconsistent with the constitution
on the basis that it prohibited her from using surrogacy as a means of becoming a parent and,

6 Interview with Dr Robert Busingye, senior obstetrician and gynaecologist, 18 December 2019, Kampala. Dr
Busingye further states that about 75% of these cases are due to sexually transmitted infections.To emphasise this
aspect of infertility, the doctor recalled an example when one of the pioneer facilities in the country was just
opened in 2004 and the president offered a donation of free ART services, many people turned up for assess-
ments. Of these, over 50% of them were actually infertile.
7 Zegers-Hochschild et al. (n 3).
8 BBC News, ‘Birthday Honours: Test Tube Baby Pioneer Knight’ (BBC News, June 10 2011) www.bbc.co.uk/
news/health-13727900 accessed 14 October 2020.
9 Dickson v the United Kingdom,Application No 44362/04 of 4 December 2007 para 66.
10 Application No 6339/05 of 10 April 2007 para 71. See also Costa & Pavan v Italy (Application No. 54270/10 of
28th August 2012) and SH & Ors v Austria (Application no. 57813/00 of 3rd November 2011 para 82) where the
court considered the right of the couples to make use of medically assisted procreation.The former case involved
an Italian couple who were healthy carriers of cystic fibrosis and wanted, with the help of medically assisted pro-
creation and genetic screening, to avoid transmitting the disease to their offspring.The court held that there had
been a violation of Article 8.The latter case also held that Article 8 should allow for the making of reproductive
choices an expression of private and family life.
11 See, generally, C Van Niekerk, ‘Assisted Reproductive Technologies and the Right to Reproduce under South
African Law’ (2017) 20 PER/PELJ 1–31.
12 Bragdon v Abbott, 524 US Supreme Court 624 (1998). See ‘Workplace Rights for Those Suffering from Infertility’
(The Spiggle Law Firm) www.spigglelaw.com/employment-blog/workplace-rights-for-those-suffering-from
-infertility/ accessed 14 October 2020.
13 AB and Another v Minister of Social Development, (CCT155/15) [2016] ZACC 43; 2017 (3) BCLR (CC); 2017 (3)
SA 570 (CC) (29 November 2016) [313]; www.saflii.org/za/cases/ZACC/2016/43.html accessed 14 October
2020.

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 Assisted reproductive technologies

therefore, violated her rights to privacy, reproductive autonomy, dignity, equality, and access
to health care. The court considered these rights and found for the applicant, affirming that
reproductive autonomy includes non-coital reproduction.14 Africa has been slower at catching
up with this contemporary development going by country statistics. South Africa was the first
country on the continent to have a successful IVF birth in 1984, followed by Nigeria in West
Africa in 1989,15 Uganda in 2004,16 and Kenya in 2006.17 Since the continent constitutes 16%
of the world’s population, it would be expected that its share of ART would be reflective of its
significant demographic dimension. Surprisingly, however, the use of ART is much less than its
expected fair share of 320,000 cycles per year. In the World Report on Assisted Reproductive
Technology, data from Africa represented only 1% of global ART activity.18
This is even more surprising given the prevalence of infertility is highest in low-resource
countries, particularly in sub-Saharan Africa. It has been estimated that 8% to 12% of couples
worldwide are infertile with 9% currently cited as the global average.19 On the other hand,
in some areas of sub-Saharan Africa, infertility has been recorded as high as 30%.20 In these
circumstances, the demand for ART should, therefore, be high in this part of the world and,
resultantly, its use.This, however, is not the case.21 One explanation given for the low continental
representation of ART is the widespread belief that infertility is not a pressing problem in poor
developing countries with several justifications to this, one being that Africa is already over-
populated and second that infertility is a low priority when confronted with competition from
other healthcare demands such as malaria and HIV. In fact, in Uganda, the national total fertility
rate is still quite high at 5.4 and was even higher in previous years.22 The other reasoning is based
on an argument of limited resources, stating that the expensive techniques required under ART
cannot be justified in countries where poverty is still an important issue.
In Uganda, where the right to health is not expressly provided for in the constitution, but
rather in the National Objectives and Directive Principles of State Policy,23 arguing for access
to ART as part of the right to health makes for a weak argument. It can also be claimed
that Uganda is still contending with basic developmental issues like poverty, high unemploy-
ment, high proportion of ill health in the populace, overpopulation, and poor infrastructure.

14 This decision was however later overturned by the constitutional court on the basis that the section in contention
(S.294) did not violate the applicant’s right to reproductive autonomy as the right contained in S.12(2)(a) pertains
to an individual’s own body and not that of another woman.
15 Tajudeen (n 3) 155.
16 ibid.
17 Thiankolu Muthoni, ‘Towards a Legal Framework on Assisted Human Reproduction in Kenya; Some Thoughts
on the Law,Technology and Social Change’ (2007) 9.
18 See W Ombelet and J Onofre, ‘IVF in Africa: What Is It All About?’ (2019) 11(1) Facts,Views, and Vision in
ObGyn 65–76.
19 ibid.
20 Robert Nachtigall, ‘International Disparities in Access to Infertility Services’ (2006) 85(4) Fertility and
Sterility 871–75.
21 It is documented that in sub-Saharan Africa the utilisation of ART in 2010 was 87 cycle/mppy compared with
474 cycle/mppy and 900 cycle/mppy for global and Europe utilisation, respectively. In 2014 the contribution of
Africa to the 1,647,777 ART cycles reported globally was only 1%.The minimal optimal need of the 1.25 bil-
lion (16% of global population) inhabitants in Africa is 1,875000 cycles.These figures reflect the huge shortage
of ART services for infertile couples in Africa. See, further, Gamal I Serour et al., ‘The Place of ART in Africa’
(2019) 4(2) Global Reproductive Health e27.
22 Uganda Demographic and Health Survey 2016, 13.The fertility rates for previous years were higher at 6.2 (2011),
6.7 (2006), and 7.4 (1988/9).
23 Principles 14 and 20.

85
 Zahara Nampewo

Consequently, there are many reasons that states can pick on to deny access to expensive high-
technology treatments for infertile couples.
Infertility care through ART has been included as an integral part of reproductive health-
care highlighted in the WHO’s Sustainable Development Goals (SDG).The aim of SDG 3.7 is
‘to ensure universal access to sexual and reproductive health care services, including for family
planning, information and education, and the integration of reproductive health into national
strategies and programs by 2030.’And the following words ring true to this:

In a world that needs vigorous control of population growth, concerns about infertility
may seem odd, but the adoption of a small family norm makes the issue of involuntary
infertility more pressing. If couples are urged to postpone or widely space pregnancies,
it is imperative that they should be helped to achieve pregnancy when they so decide,
in the more limited time they will have available.
(Mahmoud Fathalla, Director Special Programme of Research,
Development and Research Training in Human Reproduction)

Religious, moral, and cultural attitudes on ART in Uganda

In most African countries, there is a high socio-cultural value attached to procreation. Children
are important for many reasons, including social status, identity, and continuity of lineage.
Consequences of involuntary childlessness are usually much more pronounced in Africa than
in other countries from the West, often coming with social stigma, isolation, and abandonment.
Additionally, because of the patriarchal nature of the majority of African societies, women are
often blamed in cases of infertility. According to Gamal Serour, infertility in Africa is a grave
medico-socio-cultural problem.24 Women can be punished for failing to bear children. The
repercussions include, and are not limited to, divorce or abandonment by husbands, loss of eco-
nomic security and social support, fewer rights to property, becoming the subject of rumours, as
well as physical, mental, and social abuse.
In this discussion, specific focus is placed on the perception of ART as a means of redress
against infertility, and reactions to it from the religious and cultural angles, all of which set
perceived morally acceptable standards.The subject of study is the Baganda, the biggest ethnic
group in Uganda,25 selected for its representative perceptions for other parts of the country.The
data here was generated through interaction with Islamic and Christian religious leaders and
cultural leaders from different subgroups within the Ganda community.
Just as in other parts of the country, the ability to procreate for the Baganda is significant
because it is the basis for the continuity of patrilineal bloodlines through the clan systems.26
The Baganda are socially organised under a patriarchal model supported by a patrilineal line of
descent. Every Muganda belongs to a clan and this comes with social identity, roles in society,
access to property and even burial grounds.27 As a patriarchal culture, men are at the top of the

24 Serour et al. (n 21).

25 Uganda Bureau of Statistics, National Population and Housing Census (Uganda Bureau of Statistic 2014), www.ubos
.org/ accessed 14 October 2020.
26 Martha N Mukasa, ‘Ethical and Sociocultural Considerations for Use of Assisted Reproductive Technologies
Among the Baganda of Uganda’ (thesis, Georgia State University 2013) https://scholarworks.gsu.edu/anthro_t
heses/78 accessed 14 October 2020.
27 In Buganda, particular clans play specific roles in society and members of the Ganda community take particular
pride in whatever clan they belong to. For instance, the Nkima (monkey) clan is tasked with the special role of

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social hierarchy and their status in adulthood is linked to the quality of children produced, with
male children being the most desired outcomes from pregnancy.28 Children are also important
for the economic health of family units, often providing much needed labour in gardens, and as
caregivers for younger siblings.Additionally, succession is through the eldest male child.
Because of the attachment to continuity of lineage, family security, and link to property, there
is a lot of social pressure on couples to reproduce, and often this social anxiety is suffered by
women.Therefore, just as in other parts of Africa, the inability to procreate in Buganda comes
with stigmatisation, isolation, ostracisation, and disinheritance. Cases of neglect of women by
their husband’s families or abandonment by partners are common.29 Many women also shared
stories of physical and psychological violence, economic deprivation, and denial by partners as
well as polygamy.30
Owing to the social pressure to procreate, ART has become one of the attractive means to
address involuntary childlessness. However, it is not without controversy. Our engagement with
respondents from the religious and cultural members of society in Buganda during this study
indicate that, against the background of increased and fast-paced medical and scientific develop-
ments making childbearing possible for infertile couples, ART is a sensitive ethical and moral
issue.
For those toeing the religious line, most contended that childbearing is the work of God and
only the supreme being has power to give children, arguing that scientists should not be allowed
to take part in this responsibility and play god.They agreed with the official view of the Roman
Catholic Church, strongly opposing all kinds of IVF or artificial conception.The position of the
church posits that IVF is unnatural.31 According to this group, insemination through artificial
means separates the conjugal act from the procreative act, thus threatening the institution of
family and the dignity of the human person.The church advocates for adoption as an acceptable
option to assisted reproduction.32 This school of thought further expressed concern about the
ownership and legal status of the embryo in the event of divorce or death of either of the couple.
Other than the Sunni and Shia Islamic sects, which are in support of assisted reproduction in
general, with differences of opinion on issues such as third-party gamete donation and surrogacy,
the religious segments are generally not in favour of ART.
On cultural moral grounds, ART is still a subject of suspicion. Because of the strong asso-
ciation with clans in Buganda, questions were often posed to the researchers during this study
regarding where children born of ART would be buried in case of death or whether they should
inherit from the family.These suspicions were on the basis that through ART, you could never
truly tell the identity of a child especially when there had been gamete donations.This tendency
was particularly pronounced in instances of sperm donations on grounds that men would have
no corporeal bond with the child (while women using donor eggs would have such a connec-
tion to the offspring through pregnancy). At the same time, because Buganda is a patrilineal

adorning the king with his robe on coronation day, while the Nte (cow) clan are the official royal iron workers
for the king.They make the royal hoe used in the last funeral rites of a deceased king.
28 Abasi Kiyimba, ‘Gendering Social Destiny in the Proverbs of the Baganda: Reflections on Boys and Girls
Becoming Men and Women’ (2005) 17(2) Journal of African Cultural Studies 253–70.
29 Ombelet and Onofre (n 18).
30 Interview with Nansa (not real name), 4 October 2019.
31 Haas John,‘Begotten Not Made:A Catholic View of Reproductive Technology’ www.usccb.org/issues-and-actio
n/human-life-and-dignity/reproductive-technology/begotten-not-made-a-catholic-view-of-reproductive-t
echnology accessed 14 October 2020.
32 ibid.

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 Zahara Nampewo

society, every child automatically takes on their father’s clan at birth, leading to uncertainty
about what clan a child born out of ART really belongs to. Also, according to the customs of
the Baganda, one is not supposed to marry into one’s clan or that of their mother’s.This type
of system is referred to as being exogamous.33 Similarly, one is not supposed to eat the totem
of one’s clan or that of the mother’s clan.34 Some members of the Baganda community asked
questions on how these questions could be resolved when one could not really ascertain where
a particular child begotten from ART really belonged.
This need to pass on ethnic identity through male bloodlines makes ART socially problem-
atic and, as such, less acceptable to the community. There were concerns voiced that children
born from such processes could stand a higher chance of being shunned in families and clans.
Furthermore, according to one source, it was a matter of contention as to why single women
who are not married ‘properly’ as required by Ganda cultural norms or even persons of different
sexual orientation should have children through ART. According to them, marriage is central
in the making of families and therefore, extending reproductive rights through ART to persons
who are not perceived to conform to societal norms is a threat to the continuation and preserva-
tion of family lines and Ganda culture.
Another interesting cultural phenomenon is the attitude towards twins in Buganda. Twins
are highly desired in Buganda and are regarded as a blessing, attracting special names for them
and their siblings as well as their parents. Bearing twins in Buganda requires the performance of
certain rituals which reinforce the unique special position of these children in society. But once
people know they were conceived under ART, then they become suspect.35 This matter was
raised in view of the fact that ART often comes with multiple pregnancies and implying that
twins conceived in this manner were perhaps not ‘authentic.’ Gender dynamics were also high-
lighted as an offshoot of ART for the obvious preference of male children in patriarchal societies
such as Buganda. It was, therefore, questioned whether ART would not heighten genetic gender
selections in preference for sons, and in so doing promoting ‘artificial’ sons for that matter.
Finally, let me highlight an interesting comment made by one respondent to what he felt
was the socially inappropriate process of ART, especially on the side of men. According to
him, masturbation as a means to generating samples of male gametes for use during ART was
repulsive of social and cultural norms, and that rather than resort to this, men should be allowed
to choose other fertile partners.36 From this, it can be deduced that, culturally, ART is yet to
succeed as a fully acceptable mode of procreation especially with clan heads interested in con-
tinuity of clan lineages.

Law and policy on ART

For the longest time, science and technology in the area of reproduction and specifically involv-
ing ART has been way ahead of the law. In fact, the law has mostly been playing catch up,
attempting to address particular scenarios after they have occurred. It should be noted that, even
where states are willing, the issue of regulating ART services is not an easy one.

33 ‘The Clans of Buganda’ www.buganda.com/ebika.htm accessed 14 October 2020.

34 ibid.
35 Mukasa (n 26).
36 Interview with M Nsobya, Kampala 12 March 2020. Similar feelings on this issue exist in other parts of Africa. See
Ayodele Jegede and Adetona Fayemiwo,‘Cultural and Ethical Challenges of Assisted Reproductive Technologies
in the Management of Infertility among the Yoruba of South Western Nigeria’ (2010) 14(22) African Journal of
Reproductive Health, 115–127, 121.

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 Assisted reproductive technologies

In Uganda, despite the first successful IVF birth in 2004, there is no law to regulate the con-
duct of this new technology and neither is there a specific enforcement mechanism to oversee
the same. An ever-increasing need for clarity and consistency in the area of reproductive law is
needed in order to keep up with the scientific advances mandated by ART.What is in existence
is the general Uganda Medical and Dental Practitioners Council, which licences the ART facili-
ties and medical practitioners, just as it does for any other medical field.37 The council is guided
by the major principles and norms of medical practice such as the ‘do no harm/safe practice’
principle and prioritising the best interests of the patient.
Some of the grey areas requiring regulation in Uganda include specifications for donor eggs,
donor sperm or donor embryos; limits to maximum number of embryos that can be transferred
into a woman’s uterus; consent to use and storage period of gametes; and use of surplus gametes,
embryo freezing, and rights arising from surrogacy. Failure to regulate an aspect of human life as
important as IVF is so grave because of the potential for conflict as well as the need to stipulate
rights and duties for all those concerned.
Many ART-related cases in other parts of the world have already been the subject of legal
interpretation and judicial dispute resolution.The English case of Evans v Amicus Healthcare38 is
a clear example of a conflict arising out of the controversies raised by ART. In this case, Natalie
Evans wished to have an embryo implanted that had been created from her eggs and the sperm
of the man from which she had subsequently separated.These embryos were created just before
she had a hysterectomy.39 Her only chance to have a genetically related child was to have the
embryo implanted. The man had written to the clinic to notify it of the separation between
himself and Natalie and requested that the embryos be destroyed.40 Natalie challenged this posi-
tion, but was not successful on grounds that the embryos had not been used because they were
not yet implanted in her and that she did not have the consent of the donor to use them. Such
a decision is interesting under law because it highlights aspects of consent to embryos.
Similar cases on this matter include Centre for Reproductive Medicine v Mrs U,41 where consent
was revoked by the male donor after initially agreeing to the posthumous use of his sperm to
treat his wife, and that of Human Fertilization and Embryology Authority ex parte Blood42 regarding
the right to infertility treatment of the applicant with the sperm of her dead husband.The sperm
had been taken from Mr Blood as he lay in a coma shortly before his death from meningitis.43
Such cases are important as they illustrate the need for the law to come in quickly to regulate
aspects of ART that are already happening in fact.
As stated earlier, no regulation exists in Uganda on ART and, yet, it is a growing medi-
cal practice in the country. There is a mushrooming of ART centres in the country but with
no clear guidelines on standard operating procedures required of this specialised field out-
side of those provided under general medical practice in Uganda. Therefore, aspects such as

37 In an interview with Dr Busingye, it was revealed that the council licenses ART facilities as well as ART prac-
titioners (reproductive specialists) on an annual basis. A license is issued pursuant to meeting the minimum set
requirements. An example of such requirements for the specialists is the proof of attendance of a minimum of
48 hours of an accredited continuous professional training in the preceding year, in one’s area of specialisation.
The council is able to obtain data of trainings attended from the relevant hospitals offering it across the country.
38 Evans v Amicus Healthcare [2004] EWCA Civ 727.
39 This means the removal by operation of a person’s ovaries.
40 Jegede and Fayemiwo (n 36).
41 Centre for Reproductive Medicine v Mrs U [2002] EWCA Civ, 565, [2002] I FLR 927.
42 Human Fertilization and Embryology Authority ex parte Blood (1997) 2 WLR 807.
43 Jegede and Fayemiwo (n 36).

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 Zahara Nampewo

specifications of medical personnel to work in this field, level of infrastructure required to ensure
safety of patients or gametes, and the like are undefined.
The lack of a specific legislation also comes with absence of a regulatory framework.Without
this, a licensed medical doctor working in reproductive rights can generally practise in the field
of ART.The approach being followed in Uganda is a kind of self-regulation, one which presents
a lot of discretion to the healthcare service provider to work with flexibility minus account-
ability from an overarching specialised oversight body.
Subsequently, critical aspects in ART practice such as consent or its withdrawal to engage
in ART or donate gametes, recruitment of, and compensation of gamete donors (to avoid the
same donors donating in different places) and surrogates, are left to the general law of medical
practice, law of contract, and individual professional standards, thus affecting quality and stand-
ardisation. Similarly, matters of rights and duties remain in the grey, for example rights of sur-
rogates, third-party reproduction, infertility treatment insurance benefits, and pre-implantation
genetics gender selection.
The absence of a relevant law on ART treatment has grave and negative social implications
arising from the lack of checks by government to monitor the activities of medical personnel.
In a country such as Uganda with high poverty levels44 and fairly high illiteracy levels,45 espe-
cially on the subject of ART, it is possible for ART service providers to use this predicament of
absence of standards to take advantage of unsuspecting and desperate members of the public in
ill-equipped and unlicensed fertility clinics.
It is clear that there is a glaring gap in the area of regulating ART. It is imperative for the
government to adopt a harmonised, comprehensive regulatory framework that conforms with
international best practices in the administration of ART. Lessons can be taken from Kenya,
which has a specialised ART department within its medical professionals council, or the United
Kingdom, which has an enforcement agency set up just for this. Interestingly, Kenya was slightly
behind Uganda in the early days of ART, only having recorded its first IVF baby in 2006,
two years after Uganda. The latter now seems to be ahead in terms of regulating this issue
which points to faster progress on its end.The draft ART regulation spearheaded by the Uganda
Medical and Dental Practitioners Council addresses most of the aspects needed for a com-
prehensive regulation of ART practice in Uganda. The draft regulation is generally aimed to
ensure safe and quality standards and punish misconduct, and it states in its preamble that it was
prompted by malpractices in IVF clinics resulting in harm to patients. Sec 9(2) of the draft ART
regulations defines ‘fertility services’ to mean medical, surgical, gynaecological, or obstetric ser-
vices provided for the purpose of assisting women to carry children.
Of particular importance to note in the draft regulation are the following: emphasis on
patient empowerment through information sharing and consent; emphasis of counselling for all
parties involved in the process; regulation of aspects such as embryo and sperm safety, preserva-
tion and disposal of gametes, pre-implantation genetic diagnosis, pre-implantation sex selection,
protection of surrogate (in relation to doctor-recommended interventions such as therapeutic
termination of pregnancy, evacuation of intra-uterine fetal death, multiple pregnancy, caesarean
section delivery, etc.); specification of age of persons involved in ART technologies as 18 years
and above; and status of mother, father, and child.

44 World Bank, Uganda Poverty Assessment 2016: Fact Sheet, www.worldbank.org accessed 4 April 2020.According to
this report, the proportion of the Ugandan population living below the national poverty line was 19.7% in 2013.
45 Uganda Bureau of Standards, Education Monograph Report, www.ubos.org/. The literacy rate for the country is
given as 72.2% for the population aged 10 years and above.

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Its categorisation of types of mother is interesting. It specifies four categories of ‘mother’:

(1) A ‘genetic mother’ – a woman who carries a child as a result of the placing in her of an
embryo.
(2) A ‘birthing mother’ – a women who carried a child as a result of placing in her of an
embryo.
(3) A ‘surrogate mother’ – a woman who carries a child in pursuance of a notarised surrogacy
agreement.
(4) A ‘commissioning or intended mother’ – a woman ‘A’ who enters into a surrogacy agree-
ment with another woman to have the embryos supplied by her, to be placed in the sur-
rogate who carries the pregnancy and delivers the child to her as the mother with parental
responsibilities of the child gestated and delivered.

The draft ART regulation is not only strong with regard to the procedural aspects of ART, but
also takes care of human rights and governance matters for persons involved. It also deals with
penalties as well as grant or revocation of licence. Consequently, it provides remedies to persons
for wrongs that may be committed. The passing of this regulation would be a new dawn for
ART practice in Uganda because it would outline permitted procedures, stipulate rights and
duties of parties involved, and create a non-questioned oversight role for a regulating agency.

The practice of ART within Uganda’s current

health sector: realities and experiences
As stated earlier, there are high levels of infertility in Uganda. According to a renowned ART
practitioner, about 75% of infertility cases in Uganda are due to sexually transmitted infections,
which leads to blockage of the fallopian tube in women and sperm duct among men.46 This
section highlights findings on the state of ART as practised in Uganda. The data was availed
through formal interviews and casual conversations with ART practitioners, donors, and surro-
gates, as well as women and men who sought or had used ART services in Uganda. Experiences
and views about ART, surrogacy and donation, quality of service, and the impact on their lives
were probed. In terms of economic positioning, it should be noted that the patients were mostly
middle to upper class, while the donors and surrogates came from poor economic and educa-
tional backgrounds. It was, however, not easy to get this data. Most of the clinics operate on a ‘no
information’ basis, pleading patient confidentiality.The study team made many appointments to
speak with practitioners that were not honoured. Recipients of ART services were also nerv-
ous about sharing information, due to stigma attached to infertility in society. It can already be
concluded that the practice of ART in Uganda is generally shrouded in silence and secrecy both
on the side of the providers and the beneficiaries.
To set the context for ART practice in Uganda, it is important to note from the onset that
Uganda is a developing country with the majority of the population living below the poverty
line47 and with no recognisable minimum wage.48 Unfortunately, in such a poor economic state,

46 Interview with Dr Busingye (n 6).

47 World Bank (n 44).
48 Attempts to enact a minimum wages bill were rejected by the president. Having a law on minimum wages would
have enabled the government to fix minimum wages for workers in various sectors. It also provided for annual
revisions. See further URN, ‘Museveni Rejects Minimum Wages Bill’ The Observer (27 August 2019) https://
observer.ug/news/headlines/61776.

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 Zahara Nampewo

the right to health is not specified in the constitution and the health system does not offer public
social security. As such, health is not a priority issue as evidenced by the low level of resources
allocated to it in the national budget.49 Likewise, infertility is placed further lower in the gradi-
ent of public health issues of concern in the country. In this state of affairs, ART as a remedy
to persons suffering infertility is only accessible through the private sector, and couples have to
bear the full cost of their treatment.This is in contrast to the practice in many European coun-
tries where a specific number of cycles of IVF treatment are reimbursed by their governments.50
Thus, because of the prohibitive cost and lack of government support, not many people can
afford ART. Due to these and other factors, Uganda has seen less development in ART in recent
decades than in other parts of the world.51

Infrastructure and operation

The pioneer ART clinic was established in Uganda in 2004 and the first successful IVF baby
delivered in the same year. As such, the practice of ART in the country is still fairly new. From
our engagement with practitioners in this field, we learnt that there are several factors imped-
ing the successful practice of ART, first being the high start-up costs. Just like other specialised
medical practices, establishing ART centres relies on expensive imported equipment. All of the
companies involved in the setting up of new IVF centres are based in foreign countries and even
after successful setup, practitioners regularly face problems with high maintenance costs due to
the need to bring in experienced service technicians and engineers from abroad.There is also
lack of a reliable local supply of good quality drugs, culture media, and other important con-
sumables.Aligned to this is the unstable power supply and frequent outages. In these conditions,
successful ART programmes require standby generators and electricity converters to guarantee
optimal laboratory conditions,52 which further push up the costs of operation.
Additionally, there is a lack of well-trained fertility specialists such as reproductive endocri-
nologists, embryologists, and IVF nurses.53 Most of the specialists are general medical practition-
ers and while the country requires a minimum of 12 embryologists, at least 2 in each region,
the country’s existing capacity at the moment lies between 2 and 3 of these.54 As such, many
of the clinics have to co-opt more experienced and trained international staff, both on a part-
time and full-time basis. In view of this, transnational networks of skilled personnel, particularly
those from Europe and a few from Nigeria, have been essential for the successful establishment
of ART clinics in Uganda.Thus, because of the aforementioned hardships, many agree that it is
not as easy to do IVF in Africa as in Europe.55
On a positive side, Uganda has a relatively fair supply of gynaecologists, currently producing
an average of 50 newly trained ones coming out of medical school every year.These only need

49 For the FY 2019/2020 health was allocated 7.9% of the total national budget and 7.8% in 2020 (2020/2021
National Budget Framework paper, Uganda).
50 JO Fadare and AA Adeniyi, ‘Ethical Issues in Newer Assisted Reproductive Technologies: A View from Nigeria’
(2015) 18 Nigerian Journal of Clinical Practice, S57–S61.
51 Compare this to the situation in Israel, which boasts one million IVF cycles per capita.
52 RK Adageba, ET Maya, and FJ Damialie,‘Setting Up and Running a Successful IVF Program in Africa: Prospects
and Challenges’ (2015) 65(3) Journal of Obstetrics and Gynecology of India 155–57.
53 Viola Hörbst, ‘You Cannot Do IVF in Africa as in Europe’ (2016) 2 Reproductive BioMedicine and Society
108–115 www.sciencedirect.com/science/article/pii/S240566181630020X accessed 14 October 2020.
54 Interview with Dr Busingye (n 6).
55 Hörbst (n 53).

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two years’ additional training in order to become specialised reproductive practitioners. But even
with this shortage in personnel, many ART clinics have been established in Uganda.This study
found that there are six such clinics, although the figure seems to be growing by the day.What
is certain for a fact is that all these specialised clinics are located in the capital city in Kampala,
bringing about a disparity in ART services between the urban and rural parts of the country.
Also, just from observation of site visits, it was clear that fertility clinics are at different levels of
expertise, implying that there is a disparity in the services available to patients.56 Furthermore,
because of the difficulty in gauging the scope of ART services available, it is nearly impossible
to generate a population-level database that accurately defines the burden of infertility, need for
ART, recording, auditing, and difficulties in access to ART services. In fact, when asked how
they learnt about the ART services, patients replied that they were referred by previous patients
or general gynaecologists.
It is important to mention here that Uganda is in the process of establishing a state-funded
centre for ART. Mulago National Referral Hospital will be the first public health facility to
provide ART to enable infertile women to bear children.57 According to Dr Robert Busingye, a
senior consultant in obstetrics and gynaecology at Mulago hospital who doubles as the president
of the newly launched Uganda Fertility Society, ‘the 320-bed capacity Women’s Hospital will
have an IVF facility and will benefit from new technologies from WHO which will help bring
down the costs of offering IVF.’58 He further states that 15 doctors and nurses at the hospital have
benefitted from specialised ART training in India. He also called upon the government to waive
taxes on medicines used in ART in order to make services affordable in the private sector. Since
its completion in 2017, however, the hospital is yet to commence offering services.

Regulation
Even as ART services grow in Uganda, the issue of regulation remains outstanding. Regulation
is vital for quality assurance, compliance with standards as well as protection of patients and
other parties involved. Some of the critical elements that require regulation include condition of
clinics, standardisation of common medical practices in this field, qualifications of health work-
ers, cost, information, and consent.
In the absence of a specific regulation on ART, there are so many unknowns about the
practice of ART in Uganda. From our engagement with the health practitioners, much of the
medical and ethical management of ART service provision is the responsibility of the director
of each clinic. On the one hand, directors are guided in this aspect by their understanding of
biomedical ethics and by their entrepreneurial considerations, and on the other hand, by their
religious convictions and their reputation among patients and the wider society.
As shared by one embryologist,59 the processes undertaken at their clinic are premised on
‘borrowed or assumed law’, best practices of what other leading countries in the field are doing
and medical ethics generally, including conscience.When ethical questions arise, in the absence
of law ‘one can only act on what they believe is right by their conscience.’ According to him,
practices such as surrogacy and egg donation require regulation because they have the highest

56 The team visited three clinics and one could observe just from the infrastructure that some clinics were far ahead
of other newer and just established ones.
57 Emmanuel Ainebyoona,‘Mulago to Start Low Cost Infertility Treatment’ Monitor Newspaper (27 February 2017) 6.
58 ibid.
59 Interview with Dr Maurice Eluba, senior embryologist, Women’s Hospital International and Fertility Centre,
Kampala, 5 February 2020.

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 Zahara Nampewo

potential of being commercialised and as such lead to exploitation of the people seeking the
services. Genetic analysis and gender selection are other such areas. Per the embryologist:

Some clients come and they want to eliminate any chances of giving birth to a child
who has a deformity. Because this is an area that is not regulated, even where someone
has a 10% chance of giving birth to a child with a disability and they have the money,
they are willing to spend on the procedure (which is extremely expensive).The doc-
tors cannot stop them from accessing the service they want.
On the aspect of gender selection, it is never the intention of the analysis but because
the technology allows the person to examine all the chromosomes, one ends up get-
ting the gender from the XY chromosome.This has however been outlawed in most
European countries and can only be accepted in cases of a gender related genetic
disease.

Another aspect of concern is preservation of surplus gametes and embryos. It is uncertain for
how long fertility clinics should store such and at what conditions, keeping in mind that power
supply is a problem in Uganda. Studies from developed countries have shown that the viability
of the frozen embryos reduces with longer storage time.60
In view of the discussion, ART practice in Uganda is very much still in a free-for-all and a
lot is left to the discretion and professional standards of each practitioner. Most clinics make their
own rules and follow varied standards.Therefore, quality assurance of the procedures remains an
important factor because of the potential for abuse.There is, therefore, need for regulation and
especially guidance on some of the controversial aspects of ART practice.

General trends and patterns

Currently, ART is carried out in the private sector. All the centres are owned and operated by
Ugandan doctors, some with technical collaborative support from individuals and institutions
from the Western world.
The first cycle of IVF is often unsuccessful, and depending on financial capacity, many
patients may have to follow this with a second and even a third trial.61 Regrettably, each of
these cycles has to be financed privately by the patients, and there is no arrangement for no-
cost repetition of the procedure in the event that the initial one fails. At the same time, con-
ceptions following assisted reproduction are high-risk pregnancies and may be followed by
obstetric complications including extrauterine complications, tubal ectopic pregnancies, sponta-
neous abortions, multiple pregnancies, high perinatal mortality, preterm deliveries, and low birth
weight babies.62 Accordingly, pregnancy and childbearing through ART, even when successful,
is not always easy. With increasing sophistication and fine-tuning of the procedure, however,
fertility specialists are now able to transfer more than one embryo with very good outcomes.
According to one gynaecologist:

60 Fadare and Adeniyi (n 50) 161.

61 Interview with Dr Mark Muyingo, Kampala, 8 April 2020. See also, generally, LJ Noreh, O Tucs, CB Sekadde-
Kigondu and JA Noreh, ‘Outcomes of Assisted Reproductive Technologies at the Nairobi In Vitro Fertilisation
Centre’ (2009) 86(4) East African Medical Journal 156–161 at 158.
62 Noreh et al. (n 61).

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 Assisted reproductive technologies

One of the major challenges that arises with ART services is managing expectations.
Notably, the chances of failure are more than chances of success.Yet, failure to conceive
usually brings feelings of grief and sadness.This however is managed through counsel-
ling where by the patients are informed about the probabilities. In an era where the
market is very competitive, some facilities may paint a picture that they have a very
high success rate. This is hard to validate because Uganda currently does not have a
database indicating the performance of different centres. This is distinct from other
countries with either voluntary or compulsory submission of data relating to ART
results.As such, clinics are encouraged to make it clear to their clients that the process
does not guarantee 100% success for giving birth.63

It should be noted that the practice of ART in Uganda is generally shrouded in secrecy.There is
little data on cases managed or success rate, and little information available for interested parties
to refer to, for example to guide selection of particular practitioners over others. In our view, a
patient just has to trust their instincts and rely on recommendations from other patients, many
of whom are unwilling to discuss their reproductive challenges publicly. One of the respondents
to the research (HN) stated:

I was asked by the doctor how many children I wanted to have and I said I wanted
2. They decided to put five embryos because normally not all of them successfully
develop and the target was that I could get either one child, or two or a maximum of
three children.

This is normal clinical practice to insert more embryos to avoid disappointment,

because when my procedure was done, we were around 14 women but only 6 of us
conceived.64

Cost
Private practitioners set up fertility clinics in their respective countries, driven by humanitar-
ian and biomedical motives, hoping to increase accessibility to high-tech solutions for their
sub-Saharan African patients.65 Yet, however humanitarian their reasons may be, ART services
are very costly. More than 98% of the population in Africa cannot afford IVF because it is too
expensive.66 The case of Uganda is no different. Charges for IVF for instance range from $6500
for a single IVF cycle, while surrogacy procedures range from $6000 to $10000.67 Many couples
are unable to undergo IVF because of those high expenses and in fact, 50% of the couples that
consult at ART clinics cannot afford the treatment.68 Part of the reason for the high costs is the

63 Interview with Dr Busingye (n 6).

64 Interview with HN,Women’s Hospital International and Fertility Centre, Kyotera, Masaka, Uganda, 6 February
2020. HN conceived five babies through IVF.
65 Hörbst (n 53).
66 UNFPA State of the World Population, Worlds Apart: Reproductive Health and Rights in an Age of Inequality, (2017,
UNFPA) https://esaro.unfpa.org/en/publications/worlds-apart-reproductive-health-and-rights-age-inequality
accessed 14 October 2020.
67 Interview Dr Maurice Eluba (n 59). A patient we talked to during the study put the cost of an IVF cycle at 24
million Uganda shillings ($6400).
68 ibid.

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 Zahara Nampewo

financial constraint incurred by the physicians to import and maintain the necessary equipment,
but also the high costs of international personnel involved in the procedures. According to a
calculation made by Huyser, the average percentage of the major cost-drivers of an IVF cycle
in South Africa in 2012 were the following: 8% for clinic fees, 28% to medication, 29% to clini-
cians’ fees and consultations, and 35% for laboratory fees (for use of equipment and the labora-
tory, disposables, culture media, and staff expenditures).69 Another reason for the high costs of the
procedures in Uganda is the piecemeal mode of payment for the different services. For instance,
costs for initial laboratory tests are billed separately from those of ovarian stimulation retrieval of
eggs for IVF, fertilisation and culture of eggs and embryos, and maternity costs.
It should be noted that the bulk of these costs are met by women.This originates from the
gendered pressures that childlessness imposes on women more than men.As a fact, most patients
at ART clinics are women. Husbands and other male partners are rarely supportive in these
ventures, reflected by their reluctance to attend clinics or even pay for the required procedures.70
HN also stated:

I first realised that I could not have children normally after I had tried traditional
methods and visited very many hospitals that could not find any problem with me.
My husband went ahead and got children from another woman and that was how I
confirmed that I had a problem. My in laws were very concerned about my inability
to give birth and so was my mother because even my younger sisters had given birth
before me. However, the money needed for the IVF process was a lot, in fact, one may
need to sell their property and also ask from relatives. I was scared about the money so
I did not go back for more than six months but after I got some money I went back
to try.
These services are not affordable, considering the number of women out there
who are struggling with infertility.The treatment is very expensive because even after
conceiving there are extra costs you incur. For example, after conceiving you visit after
every two weeks, you must have more than Sh. 700,000 ($200) per visit. Even antenatal
care is very expensive because it costs $350.
They should be made a bit cheaper, to reduce on the money they charge for the
services. Because for one to start the process you must have about Sh. 20 million (USD
2500) which is a very huge amount for an average Ugandan. If there is a way to make
this cheaper, it should be explored because infertility is not a condition among the
rich only.71

Thus, in Uganda where there is no social security in the healthcare system; couples must cover
the full expenses by themselves, which creates a major barrier to access quality treatment for
a large majority of infertile couples. Even then, the clinics still get many clients, some from
neighbouring East African countries (Kenya, Tanzania, Rwanda, Congo, Sudan, Somalia, and
Ethiopia) who cannot afford to go to South Africa, Europe, or the United States, since the costs
in Uganda are relatively low in comparison to the former.

69 C Huyser, L Boyd.‘ART in South Africa:The Price to Pay’ Facts Views Vis ObGyn (2013) 5(2) 91–99.
70 Interview with Ann Marie (not real name), patient, Neogenesis Clinic, Kampala, 27 October 2019.
71 Interview with HN (n 64).

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The practice, however, seems profitable to practitioners.Within a few years of commencing

practice, most are able to buy off their office buildings or construct new facilities. Dr Eluba
contends:

We are constructing a three storey building adjacent to the existing building. In the
near future, we will move the IVF unit to the new building, and we will have a
maternity unit, operation theatre and neonatal care unit; the latter is very important
as neonatal care services in Uganda are scarce and we have a multiple pregnancy rate
of 20%.We are doing our best to lower this high rate of multiple pregnancies, but it is
very difficult due to the pressure of the patients; most of them will be able to afford
only one treatment cycle in their entire life, so a single embryo transfer is difficult for
them to accept, as it is in all health systems, where the patient has to pay for the full
treatment themselves.72

The clinics are, however, trying to mitigate the high costs of treatment through egg sharing,
transfer of a higher number of embryos, training of local personnel, collaboration between cen-
tres in Africa to purchase consumables in bulk, and local manufacturing of some of the equip-
ment through local craftsmen.73 There is hope that with time, the costs for ART will lower and
more couples in need will be able to access the much-needed service.

Donors and surrogates

Surrogacy and egg donation are contentious matters, as raised earlier in both the cultural reli-
gious perspectives but also in law, and is proposed as one of the areas requiring regulation.While
egg donation is becoming more familiar and accepted as an inevitable part of ART, surrogacy on
the other hand is taking a while longer. Nevertheless, because of the high poverty rates and the
high unemployment rate in Uganda’s labour market,74 egg donation and surrogacy, in particular,
are gaining ground as a remunerative opportunity, particularly for young women without much
educational and professional training. That however does not stop the questioning of moral
uprightness and ambivalences of the practice by both the surrogates as well as the patients,
mostly around the use of third-party gametes (selling gametes) or offering ‘wombs for rent.’
Given the extreme poverty that countless suffer in the country, many women finally conclude
that surrogacy or donating is a morally acceptable way of earning money to achieve a better
future for themselves and their families. As one of them says:‘I think in the end [to be a donor
or a surrogate] is better than prostitution.’75
Of course, some countries with legislation on ART prohibit surrogacy for commercial gain
and also go as far as to state that surrogacy agreements/arrangements are illegal and as such
unenforceable at law.76 It can, however, be argued that surrogacy for commercial gain is neces-
sary as it helps two parties achieve their goals: the birth mother gets a child, while the surrogate

72 Interview with Dr Eluba (n 59).

73 Dr Eluba gave an example of the ICSI stabilisation table at WHI, which was made locally for $50.
74 According to the Uganda Bureau of Statistics, the national unemployment rate stands at 9% of the working age
population. See UBOS International Labour Day Book, www.ubos.org/wp-content/uploads/2019.
75 Interview with Mary (not real name), 22 October 2019.
76 See section 33 Human Fertilisation and Embryology Act, UK 2008, which criminalises both intermediary and
parties involved in such an arrangement and irrespective of the intermediary demanding a fee or not for his/her
services.The regulation is meant to limit surrogacy to cases where there are such close ties that no intermediary

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 Zahara Nampewo

mother gets money for sustenance.The proposed ART bill in Uganda makes room for surrogacy.
As a practice, however, we learnt that candidates for donation and surrogacy are subjected to
health checks and clinical tests for infectious diseases (e.g. HIV, hepatitis B and C) as part of
the screening process. Furthermore, criteria such as age, previous deliveries, and marital status
are also considered. In general, we discovered that patient demand for donors is higher than for
surrogates, but most of the candidates would prefer to act as surrogates than egg donors because
surrogacy is far more lucrative.77
Ultimately, the need for regulation of this issue cannot be underscored because of the cen-
trality that surrogacy and gamete donation play in ART.There is urgency to do away with the
silence and secrecy surrounding these two and instead aim to protect all the parties concerned
through legislation.

Knowledge and awareness

Knowledge and awareness of ART services as an option to treat infertility is generally poor.
Questions asked to our respondents during this study indicate that many did not believe in
ART and said ‘only God gives babies,’ while others just did not know about the existence of
this field of medicine.This of course is not helped by the fact that there is limited information
on the existence of ART services. Potential clients need to be guided on the scope of services
offered by particular clinics and their specialities as well as their success rates. Such information
can make all the difference between whether one will or will not use the service or whether
they will or will not ultimately have a baby.
There is also missing information at a wider community level of the magnitude of infertility,
its impact on health and quality of life, and its prevention and treatment.Therefore, the planned
law on ART should not only aim to regulate the specifics of the medical practice of ART but
also enhance community education and sensitisation on reproductive health.

Conclusion
Many families in African societies substantially depend on children for social status. Because of
the prominence of childbearing, failure to have children has always been the subject of scorn.
Often it is the women much more than the men who have borne the brunt of childlessness.
Therefore, involuntary childlessness in Africa also takes on a gendered face. The position in
Uganda is no different.The example given of the Baganda in central Uganda shows the crucial
role that children play in holding families together.
Science and technology through ART have gained ground as a method of assisting childless
couples to reproduce. In recent years, there has been a sprouting of medical clinics and health
centres in Uganda with the intention of assisting couples in this cause.The practice of ART has
generated widespread controversy along religious, cultural, and moral lines. Similarly, the prac-
tice of IVF is associated with prohibitive high costs of treatment, inadequately trained physicians
in reproductive health technology as well as unclear law and policy on reproductive health.
However, despite the devastating social, psychological, economical, and personal conse-
quences of being childless, the government of Uganda fails to prioritise the right to health and,

is needed. See Dennis Odigie and Florence Iyasere, ‘In-Vitro Fertilization in Developing Countries: Emerging
Issues’, (2018) 24(1) East African Journal of Peace and Human Rights, 108–119, 114.
77 Interview with Nasimolo, Kampala, 19 October 2019.

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thus, does not enable equitable access to healthcare through a public health scheme.Therefore,
childless couples can only access ART, which is currently very expensive, through private means.
Unfortunately, while people are desperate to have children and are often tempted to do any-
thing for this, they are also very vulnerable and can very easily be manipulated and exploited.
This is because practice of IVF in Uganda is largely unregulated, and its occurrence often hap-
pens behind closed doors. For instance, it is not clear what remedies a couple who have spent
millions of shillings would be entitled to in case of failure of conception. It is also not known
what the repercussions would be if one utilised previously frozen reproductive gametes which
resulted in a baby with disabilities as a result of poor storage facilities.Additionally, because ART
is a relatively new frontier in reproductive technology, widespread controversy about its use has
been generated along religious, cultural, and moral lines. It is clear that there is lack of full com-
munity support for it.
This chapter examined the existing law in Uganda surrounding this area of medicine and
found that there is a gap with regard to regulation.There is no law to comprehensively cover the
practice of ART in Uganda.A key message is that childlessness is not only a social or individual
medical problem but also a public health issue.We, thus, strongly support the inference in SDG
3.7 of universal access to sexual and reproductive healthcare services, including family planning,
information and education, and the integration of reproductive health into national strategies
and programs, to include ART.Thus, it is important for Uganda as a country to aspire to improve
both the medical standards in ART in order to enhance availability, affordability, and effective-
ness, as well as to address institutional and infrastructural deficiency through purpose-driven
legislation for the administration and regulation of ART treatment, backed by enforcement and
sanction for breach. This should come together with a regulatory framework for monitoring
performance of medical personnel and compliance with the law.
Furthermore,ART does not operate in a vacuum.There should be emphasis placed on pub-
lic educational programmes about the advantages of ART as an alternative to natural reproduc-
tion.These would change the negative mindset and disposition to the treatment. Having these
in place would help to further promote the human right for all men and women of full age to
marry and found a family without any limitation as guaranteed under the Universal Declaration
of Human Rights and Article 31 of Uganda’s constitution.

Acknowledgements
The funds that supported this research and field study were generously given by Nottingham
Trent University, to which I am grateful. I also acknowledge and appreciate the research and
fieldwork, provided by the team of Mr Brian Kibirango, Ms Maxine Twijukye, and Ms Rehemah
Twine, all of Makerere University in Kampala, Uganda.

Glossary78
Embryo donation: the transfer of an embryo resulting from gametes that did not originate
from the recipient and her partner.
Full surrogacy: this is where the surrogate mother has no genetic link to the child.The sur-
rogate mother only gestates the embryo, which is usually created from the eggs and sperm
of the intended parents.

78 Zegers-Hochschild et al. (n 3).

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 Zahara Nampewo

Gamete intrafallopian transfer (GIT): the procedure in which both gametes (oocytes and
spermatozoa) are transferred to the fallopian tube.
Intracytoplasmic sperm injection (ICSI): this is the procedure in which a single sperma-
tozoon is injected into the oocyte cytoplasm. If fertilisation is successful, a fertilised ovum
(or several ova) is either transferred to the mother’s or a surrogate mother’s body for normal
development in the uterus, or frozen for later implantation.
Mitochondrial donation: this allows women to produce genetically related offspring without
transferring genetic defects. It involves the removal of deoxyribonucleic acid (DNA) from
a patient’s egg or embryo containing unhealthy mitochondria to a donor’s egg or embryo
containing healthy mitochondria.
Partial surrogacy: this is where the surrogate mother provides the egg and the sperm from the
intended father is placed into the surrogate mother’s reproductive tract, through artificial
insemination, to achieve fertilisation.
Posthumous reproduction (PHR): this arises where a party has donated his/her gametes
prior to death and a recipient would like to use them thereafter or where a deceased child
has donated their gametes to their parents and the parents wish to use the gametes to create
grandchildren.
Pre-implantation genetic diagnosis: this is the analysis of polar bodies from oocytes, zygotes,
or embryos for the detection of specific genetic, structural, or chromosomal alterations.
Surrogacy: an agreement in which one woman agrees to bear a child for another woman or a
couple (intended parents) and surrender it at birth.
Zygote intrafallopian transfer (ZIFT): this is the procedure where the zygote(s) is trans-
ferred into the fallopian tube.

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986.pdf accessed 14 October 2020.
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Kiyimba, Abasi,‘Gendering Social Destiny in the Proverbs of the Baganda: Reflections on Boys and Girls
Becoming Men and Women’ (2005) 17(2) Journal of African Cultural Studies 253–70.
Mukasa, Martha N,‘Ethical and Sociocultural Considerations for Use of Assisted Reproductive Technologies
Among the Baganda of Uganda’ (thesis, Georgia State University 2013) https://scholarworks.gsu.edu/a
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Muthoni, Thiankolu, ‘Towards a Legal Framework on Assisted Human Reproduction in Kenya; Some
Thoughts on the Law,Technology and Social Change’ (2007) 1–23.
Nachtigall, Robert, ‘International Disparities in Access to Infertility Services’, (2006) 85(4) Fertility and
Sterility 871–75.

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Noreh, LJ,Tucs, O, Sekadde-Kigondu, CB and Noreh, JA,‘Outcomes of Assisted Reproductive Technologies

at the Nairobi In Vitro Fertilisation Centre’ (2009) 86(4) East African Medical Journal 156–61.
Odigie, Dennis, and Iyasere, Florence, ‘In-Vitro Fertilization in Developing Countries: Emerging Issues’
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Ombelet, W, and Onofre, J, ‘IVF in Africa: What Is it All About?’ (2019) 11(1) Facts,Views, and Vision in
ObGyn 65–76.
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Tajudeen, Ibraheem O,‘The Need for Legal Regulation of Assisted Reproductive Technology in Nigeria’
(2014) 20(1) East African Journal of Peace and Human Rights 155.
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Uganda Bureau of Standards, Education Monograph Report, www.ubos.org/.
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-age-inequality accessed 14 October 2020.
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Van Niekerk, C, ‘Assisted Reproductive Technologies and the Right to Reproduce under South African
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(2009) 92(5) Fertility and Sterility 1520–24.

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 7
ABORTION AND CONSCIENCE
A crossroads for Northern Ireland

Clayton Ó Néill

Introduction
On every medical law syllabus, students undertake study in relation to abortion and reproduc-
tive health. They question the legitimacy of abortion from particular ethical perspectives, the
moral status of the fetus, and, indeed, the relationship between the right to an abortion and
human rights law/jurisprudence. Abortion is not an easy topic – it is not black and white.
Even within the ‘pro-choice’ and ‘pro-life’ camps there are nuances of arguments in relation
to what ought to be permissible or impermissible. But, broadly speaking, the orthodox argu-
ment in favour of abortion is that respect ought to be given primarily to the bodily integrity
and autonomy of the woman. On the other side of the coin is the argument that abortion is
an infringement of the sanctity or inviolability of life, which echoes the idea of ‘God gives, and
God takes away.’The purpose of this chapter, however, is not to question or support the ethical
validity of abortion and/or contested reproductive health practices. Instead, the chapter will
analyse the changing law in Northern Ireland (NI) from a human rights perspective with a view
to assessing the appropriateness of the law, particularly as it applies to conscientious objection.
The chapter responds to the very recent implementation of the Abortion (Northern Ireland)
Regulations 2020. It also questions the reply given by the UK government to the consultation
process concerning conscientious objection to abortion that preceded these Regulations. The
chapter concludes that, while the Regulations comply with the Convention on the Elimination
of All Forms of Discrimination against Women (CEDAW), they also fail to endorse an approach
to conscientious objection that is fully reflective of the principles and spirit of Article 9 of the
European Convention on Human Rights (ECHR).
The island of Ireland has two legal jurisdictions: Ireland (Éire) (hereafter the Irish Republic)
and NI.The Irish Republic has recently changed its laws on abortion, following a nationwide
referendum where the controversial 8th Amendment to the Irish Constitution, Bunreacht na
hÉireann, was repealed and replaced by the 36th Amendment, which endorsed legislative reform
of the law in the form of the subsequent Health (Regulation of Termination of Pregnancy) Act
2018. This change may be linked to two sociological variables: on one hand, there has been a
radical sea change in the attitudes of Irish people towards abortion and reproductive rights and,
on the other hand, there has been a weakening of support of religious authority, such as that of
the Catholic Church.The success of the Repeal campaign has led to many activists calling for a

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change in the law in NI, using the slogan ‘The North is Next.’ In the absence of a functioning
NI Assembly at Stormont, the Westminster government imposed new legislation on NI for the
widening of the law on abortion so that it was aligned with human rights norms in accordance
with obligations imposed upon it by CEDAW. The same intervention happened in respect of
same-sex marriage.
The chapter is divided into two sections. The first section will set out the historical and
legal context of abortion as it pertains to NI.The latter section will explore the related issue of
conscientious objection.

The pathway to change

Social and political context
While debates for and against development in laws relating to abortion have raged with quiet
intensity in many states, in NI there is an acute alignment between religious belief and politi-
cal affiliation that renders debate relating to abortion particularly contentious. Traditionally,
Catholicism has been associated with Nationalism/Republican perspectives and Protestantism
has been connected to Unionism. In this jurisdiction, political thought and persuasion is often
guided and formed by religious affiliation, which is linked to tribal or ethnic branding. Entire
schooling processes are primarily tunnelled through one religious channel or the other. Ethnicity
itself is largely proclaimed on the basis of religious tradition.1 As indicated, religion has played
a significant role in the attitudes of citizens towards abortion.2 Many entrenched anti-abortion
political and social arguments have been made by those who purport to have strong religious
convictions.
It is not surprising that the abortion debate is addressed with the greatest ferocity from those
who hold strong religious beliefs.The usually opposing factions of Unionism and Nationalism
had traditionally been aligned in an anti-abortion stance. Or so it was.What is surprising is that
the traditional Catholic voice has been changing: younger Catholics and even older ones have
shifted their perspectives. This may be reflective of the process to amend the constitution of
the Irish Republic that had given an explicit protection to the ‘unborn child.’ In 1983, the 8th
Amendment was introduced to the Irish constitution. It stated:

The State acknowledges the right to life of the unborn and, with due regard to the
equal right to life of the mother, guarantees in its laws to respect, and, as far as practi-
cable, by its laws to defend and vindicate that right.

This solidified a position in the constitution that regarded the fetus as having constitutional
status. De Londras and Enright state that that the notion of ‘life’ was restrictively interpreted
and ‘[r]ather than recognise the 8th Amendment as protecting life in all its richness and depth,
successive courts and governments have been content to assume that it only protects the bare
condition of being alive.’3 A Repeal the 8th campaign that aimed to remove the 8th Amendment
placed a significant emphasis on the compassion and care rather than on the moral status of the
fetus. It is noteworthy that Sinn Féin (the main Republican party with parliamentary represen-

1 See, for example, Jennifer Todd, Identity, Change after Conflict: Ethnicity, Boundaries and Belonging in the Two Irelands
(Palgrave Macmillan 2018).
2 See Clayton Ó Néill, Religion, Medicine and the Law (Routledge 2018), particularly chapter 8.
3 Fiona de Londras and Máiréad Enright, Repealing the 8th (Policy Press 2018) 2.

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tation on both sides of the border) has advocated for this change in the law. Sinn Féin played a
significant role in the South in canvassing for the 8th Amendment to be repealed.4 Equally, one
of the main Nationalist parties, the Social Democrat and Labour Party (SDLP) describes itself
as ‘pro-life,’ but this is not the position of many of its prominent members.Thus, the (Catholic)
Nationalist voice holds many positions and does not provide a united perspective on this issue.
The more entrenched viewpoint in this debate comes from the Protestant traditions of
which there are many. They include Reformed Presbyterians, Free Presbyterians, and various
Evangelical groups, such as Plymouth Brethren. Major NI Unionist political parties, such as the
Democratic Unionist Party (DUP), the Ulster Unionist Party (UUP), the Progressive Unionist
Party (PUP), and the Traditional Unionist Voice (TUV), whose members are often aligned to
these religious groupings, are against the legalisation of abortion.The leader of the largest party
(the DUP), Arlene Foster, has steadfastly shown her opposition to the change in the law. It is
unlikely that their viewpoints are likely to change, and they will certainly disagree with the
content of the new abortion Regulations, which were implemented on 31 March 2020.

The road to change

The main focus of this section is on legal developments pertaining to abortion in NI, which was
in a political impasse for almost three years. During this lengthy period, the Stormont institu-
tion had been left politically vacant. However, this lacuna gave Members of Parliament (MPs)
in Westminster the opportunity to decide that it was time to change the law on abortion in NI.
Prior to the introduction of the Northern Ireland (Executive Formation etc) Act 2019, abor-
tion was a crime: the law in NI was primarily governed by Sections 58 and 59 of the Offences
Against the Person Act 1861.5 The Abortion Act 1967, which applies to England, Scotland, and
Wales (GB), was not extended to NI.6 All this was to change.

4 This has actually caused a split in Sinn Féin, where a number of members left the party and formed the Aontú party
(which is an all-Ireland political party that opposes abortion).
5 According to the now repealed section 58
every woman, being with child, who, with intent to procure her own miscarriage, shall unlawfully admin-
ister to herself any poison or other noxious thing, or shall unlawfully use any instrument or other means
whatsoever with the like intent, and whosoever, with intent to procure the miscarriage of any woman,
whether she be or be not with child, shall unlawfully administer to her or cause to be taken by her any
poison or other noxious thing, or shall unlawfully use any instrument or other means whatsoever with
the like intent, shall be guilty of felony, and being convicted thereof shall be liable… to be kept in penal
servitude for life.

Section 58 of the 1861 Act stated:

Whosoever shall unlawfully supply or procure any poison or other noxious thing, or any instrument or
thing whatsoever, knowing that the same is intended to be unlawfully used or employed with intent to
procure the miscarriage of any woman, whether she be or be not with child, shall be guilty of a misde-
meanor, and being convicted thereof shall be liable … to be kept in penal servitude.

6 Under section 1 of the Abortion Act 1967, in GB, abortion is permissible when there is a threat to the life of the
pregnant woman or in order to prevent grave permanent injury to the physical/mental health of the pregnant
mother or where there is a risk of injury to the pregnant woman or her children (up to 24 weeks gestation) or
where there is a significant risk that, if the child were born, he or she would ‘suffer from such physical or mental
abnormalities as to be seriously handicapped.’

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Northern Ireland (Executive Formation etc) Act 2019 and the CEDAW report
The introduction of the Northern Ireland (Executive Formation etc) Act 2019 by the
Westminster government, in the absence of a functioning Stormont Executive, changed the
law of abortion in NI. Section 9 of the Act is particularly important because it fundamentally
states that the NI Secretary of State must make sure that paragraphs 85 and 86 of the CEDAW
report are implemented.7 Before considering section 9 in more detail, let us consider the specific
recommendations made in the CEDAW report.

Paragraphs 85 and 86 of CEDAW’s Report

Paragraph 85 recommended that sections 58 and 59 of the Offences against the Person Act 1861
must be repealed so that no criminal charge could be brought against a woman or a girl who
has an abortion or against healthcare professionals who assist or provide an abortion.The report
recommended that legislation should be implemented to allow for the legalisation of abortion
in NI in cases where there is a threat to the physical or mental health of the woman ‘without
conditionality of long-term or permanent effects,’ incest and rape, and severe fetal impairment.
It was recommended that a mechanism ought to be introduced to promote the rights of women,
and improvements were required in relation to data-sharing between the Police Service of
Northern Ireland (PSNI) and the Department of Health, Social Services and Public Safety in
relation to self-induced abortions.
CEDAW also made a number of recommendations in relation to rights and services con-
nected to sexual and reproductive health.These include:

• Provide non-biased, scientifically sound and rights-based counselling and infor-

mation on sexual and reproductive health services, including on all methods of
contraception and access to abortion;
• Ensure accessibility and affordability of sexual and reproductive health services
and products, including on safe and modern contraception, including oral and
emergency, long term or permanent and adopt a protocol to facilitate access at
pharmacies, clinics and hospitals;
• Provide women with access to high quality abortion and post-abortion care in
all public health facilities, and adopt guidance on doctor-patient confidentiality
in this area’;
• Make age-appropriate, comprehensive and scientifically accurate education on
sexual and reproductive health and rights a compulsory curriculum component
for adolescents, covering early pregnancy prevention and access to abortion, and
monitor its implementation;
• Intensify awareness-raising campaigns on sexual and reproductive health rights
and services, including on access to modern contraception;
• Adopt a strategy to combat gender-based stereotypes regarding women’s primary
role as mothers; and

7 Committee on the Elimination of All Forms of Discrimination Against Women, Report of the Inquiry concerning the
United Kingdom of Great Britain and Northern Ireland under article 8 of the Optional Protocol to the Convention on the
Elimination of All Forms of Discrimination against Women (CEDAW/C/OP.8/GBR/1) published on 6 March 2018
https://tbinternet.ohchr.org/Treaties/CEDAW/Shared%20Documents/GBR/INT_CEDAW_ITB_GBR_
8637_E.pdf accessed 1 April 2020.

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• Protect women from harassment by anti-abortion protestors by investigating com-

plaints, prosecuting and punishing perpetrators.8

Section 9 Northern Ireland (Executive Formation etc) Act 2019

It is interesting that the 2019 Act stated that all of the preceding recommendations ‘must’ be
implemented (section 9(1)). In line with paragraphs 85 and 86 of CEDAW’s report, section 9
of the Act states that:

• Sections 58 and 59 Offences Against the Person Act 1861 are repealed (section 9(2));
• No criminal proceeding or investigation may be brought in relation to any of the offences
set out under sections 58 or 59 of the 1861 Act, as they applied to NI (section 9(3));
• Whatever other changes (regulations) which are both necessary and proportionate in order
to comply with the implementation of CEDAW’s recommendations are required to the law
in NI must be made by the Secretary of State (section 9(4));
• These Regulations must, specifically, allow for the regulation of abortion in NI, e.g. in rela-
tion to when abortion may or may not be permitted (section 9(5));
• These Regulations had to be introduced by 31 March 2020 (section 9(6));
• The duties which are imposed on the Secretary of State by section 9 must be carried out
quickly, given the important impact of the change of law on women’s human rights (sec-
tion 9(7)).

The Abortion (Northern Ireland) Regulations 2020

Following a consultation process, to be considered in more detail later, the Abortion (Northern
Ireland) Regulations 2020 were implemented on 31 March 2020. Here is a snapshot of the main
aspects of these Regulations:9

• Abortion on demand is available up to 12 weeks of gestation (section 3);

• Where there is a risk to the physical or mental health of the woman, abortion is permitted
up to 24 weeks gestation (section 4);
• No time limit exists for access to abortion in the case of severe/fatal fetal abnormality (sec-
tion 7);
• No time limit exists for access to abortion when there is a risk to the life or grave perma-
nent injury of the pregnant woman (section 6);
• An abortion may be performed where it is ‘immediately necessary … to save the life, or to
prevent grave permanent injury to the physical or mental health, of the pregnant woman’
(section 5);
• An abortion must be performed by a registered ‘medical professional’ (section 2);
• Terminations can take place in the premises of GPs, clinics and hospitals provided by the
Health and Social care trust and women’s homes in ‘where the second stage of early medi-
cal terminations may be carried out.’ Further places may be added in the future (section 8);
• In the case of a termination undertaken within 12 weeks, a certificate must be signed by a
medical professional indicating that the pregnancy has not gone past the 12-week limit or

8 ibid para 86.

9 ibid 10 and 11.

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that it is immediately essential for the abortion to be performed. In relation to the other
grounds, two medical professionals will need to sign the certificate that one of the relevant
grounds is met (section 9);
• The medical professional must notify the Chief Medical Officer when an abortion has
been performed (section 10);
• A conscience clause has been included, meaning that medical professionals can conscien-
tiously object to the abortion (section 12). (The suitability of this provision will be dis-
cussed in more detail later in the chapter.)

It is important to consider the seminal Supreme Court case of In the Matter of an Application by
the Northern Ireland Human Rights Commission for Judicial Review (Northern Ireland) (NIHRC).10
This case paved the way towards the introduction of the 2019 Act.

Human rights and health: NIHRC Supreme Court case

The introduction of the legislation in Westminster came as a response to the judgment of the
Supreme Court in NIHRC.This case acted as a catalyst for change in the law.The nature of this
book is to consider whether a universal right to health exists and to examine specific instances
that relate to health and human rights in different jurisdictions.The judgment in NIHRC was
one that relied heavily on the language and ethos of human rights, particularly the ECHR and
CEDAW.The following is a brief synopsis of the case facts.
In this case, the court considered sections 58 and 59 of the Offences Against the Person Act
1861, as well as section 25(1) of the Criminal Justice Act (NI) 1945, which made abortion ille-
gal.The Northern Irish Human Rights Commission (NIHRC) challenged these provisions by
relying on Articles 3 (prevention of torture, inhuman and degrading treatment), 8 (respect for
private and family life), and 14 (protection from discrimination) ECHR, and it sought a declara-
tion under section 4 (declaration of incompatibility) and section 6 (Acts of Public Authorities)
of the Human Rights Act 1998 (HRA). Prior to reaching the Supreme Court, the High Court
in NI had held that the NIHC had sufficient standing to bring the proceedings without an
applicant. Horner J held that the law on abortion breached Article 8 ECHR because the 1861
Act made abortion a criminal act even in instances of fatal fetal abnormality, rape, and incest.
He used section 4 HRA to make a declaration of incompatibility. However, when the case was
appealed to the Court of Appeal in NI, it was held that sections 58 and 59 of the 1861 Act did
not breach the ECHR.At the Supreme Court, it was decided by the majority that the NIHRC
did not have standing to bring the case and, therefore, the Supreme Court could not issue a dec-
laration of incompatibility. However, ultimately, the majority were of the opinion that the law in
NI represented a breach of Article 8 ECHR due to its prohibition of abortion in the case of fatal
fetal abnormality, pregnancy following rape, and pregnancy as a consequence of incest. They
considered that the prohibition of abortion under the 1861 Act did not breach Article 3 ECHR.
I will not consider the issue of standing in detail in this case. Instead, I will focus my analysis
on the Supreme Court’s approach to the ECHR (particularly given the focus of this book on
[global] health rights). Lady Hale made reference to the recent CEDAW report on the UK’s
compliance or non-compliance with Article 8 of the Optional Protocol to CEDAW.11 Article 8

10 In the Matter of an Application by the Northern Ireland Human Rights Commission for Judicial Review (Northern Ireland)
[2018] UKSC 27.
11 Lady Hale NIHRC (n 10) [9].

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of this Optional Protocol states that, if reliable information is received by the Committee on the
Elimination of Discrimination against Women, which indicates ‘grave or systematic violations’
by a state signed up to CEDAW of Convention rights, an inquiry may be conducted by the
committee and recommendations shall be made to the relevant state, based on the results of the
findings.The report discussed the ‘chilling effect’ upon doctors, who fear discussing the option
of abortion in case this might be seen as aiding, abetting, counselling, or procuring the unlaw-
ful act of abortion in NI.12 The committee found that, even though abortion was permitted in
extremely limited situations, de facto limitations meant that abortion was ‘virtually impossible.’13
For example, the report highlighted the limitation of services from the point of view of geog-
raphy, lack of clarity in relation to when abortion was permissible, and refusal of healthcare
professionals to carry out abortions as a result of intimidation or conditions which were ‘hostile’
due to the potential for prosecution, inter alia.When considering whether there was a breach of
Article 8 ECHR, the Supreme Court had to ask whether the law achieved a legitimate aim and
if this aim was proportionate and necessary in a democratic society.
The majority in the Supreme Court agreed that the law at the time represented a legitimate
aim. For example, Lady Hale stated:

the community undoubtedly does have a moral interest in protecting the life, health
and welfare of the unborn – it is that interest which underlies many areas of the law,
including the regulation of assisted reproduction, and of the practice of midwifery,
as well as of the termination of pregnancy. But the community also has an interest
in protecting the life, health and welfare of the pregnant woman – that interest also
underlies the regulation of assisted reproduction, of midwifery and of the termination
of pregnancy. And pregnant women are undoubtedly rights-holders under…both the
Convention and domestic law with autonomy as well as health and welfare rights.The
question, therefore, is how the balance is to be struck between the two.

Also, the court pointed out that a right to life does not exist for the unborn child, as supported
by the judgment of the European Court of Human Rights in Vo v France.14 Many would, how-
ever, say that Vo v France cannot simply be summarised by saying ‘Pre-birth: no Article 2,’ and
they contend that this case leaves the door open for an argument that, with increasing gestation,
there’s an incremental accrual of Article 2 rights. Interestingly, the majority in the NIHRC case
discussed opinion polls that had been published in the media which indicated that most people
in NI were in favour of a change in the law, particularly in relation to fatal fetal abnormality
and pregnancy due to rape/incest. However, they said that the main issue in this case was not
whether or not the aim was legitimate, but instead whether the breaches of women’s Article 8
rights could be necessary in a democratic society by correctly balancing the rights of the preg-
nant woman with the interests of the fetus. Specific attention was given to the court’s judgment
in Nicklinson.15 This case involved consideration of the issue of assisted suicide and whether or
not the law breached Article 8 ECHR.At the Supreme Court, the appeal was unsuccessful: the
majority held that this was an issue for Parliament and that no breach of Article 8 existed due
to the application of the wide margin of appreciation.To return to NIHRC, it was determined

12 CEDAW report (n 7) 5.Also see NIHRC (n 10), Lady Hale [9].Also see section 5, Criminal Law Act (NI) 1967.
13 ibid 5.
14 Vo v France (2004) 40 EHRR 12.Also see NIHRC (n 10), Lord Mance [94].
15 R (on the application of Nicklinson and another) v Ministry of Justice [2014] UKSC 38.

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there that one could not differentiate between Nicklinson and the present case because, even
though the potential of a fetus must be respected, it is not legally a person. In the context of
fatal fetal abnormality, rape, and incest, the majority held that the law was disproportionate and,
therefore, breached Article 8.The court also held that there was no breach of Article 3 ECHR,
a finding that was disputed by McMahon and Ní Ghráinne.16
The point to all of this is that the position on abortion adopted in NI at that time was seen
to represent a breach of human rights and action was called for to ensure that NI was compliant
with CEDAW. In NIHRC, the discussion of the incompatibility was obiter because of the fact that
the court did not have standing.The majority held that the courts did not have jurisdiction to
make a declaration of incompatibility. Even though the court did not have standing, it is clear that
the court strongly endorsed the need to consider changing the law.According to Lord Mance:

I am in short satisfied that the present legislative position in Northern Ireland is unten-
able and intrinsically disproportionate in excluding from any possibility of abortion
pregnancies involving fatal foetal abnormality or due to rape or incest. My conclu-
sions about the Commission’s lack of competence to bring these proceedings means
that there is however no question of making any declaration of incompatibility. But
the present law clearly needs radical reconsideration. Those responsible for ensuring
the compatibility of Northern Ireland law with the Convention rights will no doubt
recognise and take account of these conclusions, at as early a time as possible, by con-
sidering whether and how to amend the law, in the light of the ongoing suffering
being caused by it as well as the likelihood that a victim of the existing law would
have standing to pursue similar proceedings to reach similar conclusions and to obtain
a declaration of incompatibility in relation to the 1861 Act.17

The intense criticism of NI practice meted out by the Supreme Court meant that immediate
action was needed and was a legal requirement.This gave fuel to Members of Parliament and to
human rights organisations to push for legislative change.

Development of the law on abortion in the Irish Republic

It is also important to understand the context of the approach to abortion on the island.
In the key case of Attorney General v X, a test was created for when an abortion could be
procured, which was (many years) later set out in the Life During Pregnancy Act 2013.18 Under
this legislation, an abortion could only be performed if the life and not the health is at risk.19

16 Ní Ghráinne and McMahon assess the Supreme Court’s decision in relation to its compliance with international
law.They argue that the court was correct to find that the prohibition of abortion in the context of rape, incest,
and fatal fetal abnormality was a breach of Article 8 ECHR, but they are of the opinion that the court should
have held that there was a breach of Article 3 of the European Convention (in relation to the ban on abortion
in the case of rape or incest, but not fatal fetal abnormality). They also contend that insufficient attention was
given to international law. For example, they claim that the Supreme Court erred in not considering UN Human
Rights Committee’s views. See Bríd Ní Ghráinne and Aisling McMahon,‘Abortion in Northern Ireland and the
European Conventions on Human Rights: Reflections from the UK Supreme Court’ (2019) 68(2) International
and Comparative Law Quarterly 477–94.
17 Lord Mance NIHRC (n 10) [135].
18 Attorney General v X [1992] 1 IR 1; PP v HSE [2014] IEHC 622.Also see A, B and C v Ireland [2011] 53 EHRR
13, which provided the impetus for the introduction of the 2013 Act.
19 See De Londras and Enright (n 3) 4.

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Thus, prior to the repealing of the 8th Amendment, it was a crime to have an abortion unless it
was permitted by the test under the 2013 Act, i.e. where there was a ‘real and substantial risk’ to
the life of the woman and where this risk could only be avoided by the facilitation of an abor-
tion.20 As we know, however, the law on abortion is now regulated by the Health (Regulation
of Termination of Pregnancy) Act 2018 and the 2013 Act has been repealed.
According to section 9 of the 2018 Act, an abortion may be undertaken where two medical
professionals (an obstetrician and an ‘appropriate medical practitioner’) are ‘of the reasonable
opinion formed in good faith’ that (a) a risk to life or serious harm to the pregnant woman, (b)
‘the foetus has not reached viability,’ and (c) it is appropriate to carry out the abortion in order
to prevent the risk to the life or health of the pregnant woman. Section 12(1) states that an
abortion may be undertaken where the healthcare professional is of the reasonable opinion that
the woman has not been pregnant for more than 12 weeks. A three days’ waiting period must
exist before a termination is permitted. The legislation, however, has been criticised by many
Repeal campaigners who argue that the new law falls short of the demand for ‘free, safe, legal’
abortion in Ireland.21
How did the abortion legislation in the Irish Republic come to being in face of many
differing perspectives, and how were the dissenting voices listened to and arbitrated upon? A
central vehicle in the pre-referendum deliberative process was the use of a Citizens’Assembly,
which was made up of representatives from a wide cohort of Irish society.The Assembly was
established in 2016 to consider the position of abortion from a constitutional perspective.
Over a period of 18 months divisive, discursive, and collaborative discussions took place and
responses from various stakeholders were tabulated and considered prior to providing recom-
mendations.The work of the Assembly was broadly welcomed. It was seen as being an impor-
tant step on the pathway towards social and, ultimately, constitutional change.This description
of the context of reform in the Irish Republic situates the analysis of the Northern Irish
reform within this context of changing perspectives and developments on the island. It high-
lights the benefits attached to undertaking a consultative forum that was based upon a discur-
sive process that encompassed the voices of many factions of Irish society.The discussion will
now focus specifically on NI where this type of forum did not happen in advance of change
in the law.

Consultation process in NI
A consultation on the framework for abortion services in NI was set up in November 2019.22
This involved consultation with the Royal Colleges in NI and other relevant parties. The
closing date for responses was 16 December 2019. The purpose of the consultation was to
allow members of the public to share their opinions on the proposed changes in the law
pertaining to abortion services. Over 21,000 people responded to the consultation, which
lasted six weeks. Feedback has now been reviewed. Consideration was to be given to the

20 ibid 6.
21 Máiréad Enright, ‘“The Enemy of the Good”: Reflections on Ireland’s New Abortion Legislation’ (2018) 8 (2)
feminists@law https://journals.kent.ac.uk/index.php/feministsatlaw/article/view/658/1333 accessed 30 March
2020.
22 HM Government, A New Legal Framework for Abortion Services in Northern Ireland: Implementation of the Legal
Duty under section 9 of the Northern Ireland (Executive Formation etc.) Act 2019 UK (4 November 2019) www.gov
.uk/government/consultations/a-new-legal-framework-for-abortion-services-in-northern-ireland accessed 31
March 2020.

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 Abortion and conscience

views and values of citizens but, ultimately, it was concluded that the Abortion (Northern
Ireland) Regulations 2020 would need to be consistent with section 9 of the 2019 Act and
paragraphs 85 and 86 of the CEDAW report.The Minister of State to the Northern Ireland
Office, Robin Walker, has stated:

In considering the consultation responses, we have sought to balance the range of

views against our legal obligations, and taken pragmatic decisions informed by evi-
dence, in order to bring forward a new legislative framework that will be operationally
sound, that works best for Northern Ireland and that delivers on the Government’s
duty.23

The consultation document was set out in a modular fashion in order to allow for a focused
response. The answers were assessed from both quantitative and qualitative analytical lens.
The government contends that the yes/no responses were qualitatively analysed and that the
specific responses were considered from a quantitative perspective. The government stated
that

key opinions that emerged were noted via a series of ‘tags’ corresponding to major
themes set out in the consultation and emerging issues arising from stakeholder
engagement.This methodology helped to draw out useful themes emerging from the
consultation and the reasons behind each of them.24

Interestingly, 79% of the submissions opposed any change of the law in NI.25 Nevertheless, the
government cited the need to comply with its legal obligations under section 9 of the 2019
Act in a manner that complies with the CEDAW report.Thus, it is clear that the new abortion
framework, although legally necessary, following the 2019 Act, flies in face of a very significant
sector of NI’s population.
The 2020 Regulations represent an enormous sea change in the law pertaining to abortion
and women’s health rights. But this is not the end of the story.A key question emerges: to what
degree do or should these Regulations support and defend the right to conscientiously object
to participation in abortion provision?

Can I say no? Conscientious objection to abortion

Conscientious objection involves a healthcare professional abstaining from particular medical
procedures as a consequence of acting in accordance with belief. In medical terms, conscien-
tious objection is mainly used in the context of abortion.Acting in accordance with conscience
can be interpreted in different ways: from those who believe that conscience is acting in accord-
ance with duty, to those who refuse to believe that conscience exists. For those with reli-
gious beliefs, however, even greater gravitas is brought to the question.There is no one defined

23 HM Government, A New Legal Framework for Abortion Services in Northern Ireland: Implementation of the Legal Duty
under Section 9 of the Northern Ireland (Executive Formation etc.) Act 2019 UK Government Consultation Response
(March 2020) https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/
file/875380/FINAL_Government_response_-_Northern_Ireland_abortion_framework.pdf accessed 31 March
2020.
24 ibid 8.
25 ibid 9.

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 Clayton Ó Néill

Christian perspective but, interestingly, most Christian religious see conscience as being in some
way related to an individual response to an individual situation. Even the most rigid of Catholic
dogma allows for action in accordance with conscience where the development of conscience
is related to the formation of an informed judgement.26 All sorts of ‘moral good’ can come from
the exercise of conscience. We can think about what we do and do not with an incisive and,
maybe, insightful eye. We can subject our actions to a process of personal moral discernment.
Conscience can provide an extra tool to gauge whether action is good or not. Let us see how
conscience works for a practising Catholic. Prior to going to confession, Catholics are asked to
review their conscience, to personally interrogate the self.Thus, the sacrament of confession is
a dual process between priest and penitent. In effect, the penitent needs, through the interroga-
tion of conscience, to identify his own sins.The same is true of the Catholic who prepares to
receive Communion. She examines her conscience to determine, if, by her actions and thoughts,
she is worthy. At a religious level, in Catholicism, the exercise of conscience is part and parcel
of faith formation and faith development. But conscience has limits. If conscience goes amiss,
then a terrible state could be borne: killing could be justified on the basis of conscience, torture
and inhumane treatment could be put into play because some form of conscience permitted it.
So, conscience needs to have limits. Catholicism has provided its own limits in the form of ‘the
holy will of God.’ If conscience gives rise to will (potential action), then what is willed by the
person within Catholicism is always going to be trumped by the holy will of God.Thus, we act
in accordance with conscience, in line with our will, but, also according to traditional Catholic
values.
In general, from an overall Christian perspective, we must infer that the person who consci-
entiously objects has consciously questioned and queried the matter to which he/she is object-
ing. This means that the exercise of conscience is not a frivolous, light-hearted exercise, but is
one which commits people to a serious interrogation of the act to which they are objecting
and deep examination of the legal or moral arguments around that. Those who are drafting
legislation in relation to conscientious objection will need to consider that, for some who hold
deeply felt religious beliefs, any participation in abortion, direct or indirect, will infringe upon
their conscience.
In 2019, a special edition of The New Bioethics, edited by Mary Neal, Sara Fovargue, and
Stephen W Smith, focused on conscience in healthcare. Neal and Fovargue ask a pertinent ques-
tion: ‘is conscientious objection incompatible with healthcare professionalism?’27 They refer to
the minority of writers who agree that this is the case but, ultimately, Neal and Fovargue argue
in favour of conscientious objection. They critique the claim that conscientious objection is
‘fundamentally incompatible’ with proper healthcare professionalism because the attitude of the
conscientious objector exists in opposition to the disposition (attitudes and underlying char-
acter) that we should expect from a ‘good’ healthcare professional and conclude that this is not
the case.This, then, is the ethical dilemma and paradox that applies to conscientious objection:
if, as a healthcare professional, I am to be true to my conscience then I cannot participate in
abortion.This is my right under Article 9 ECHR.Alternatively, if, as a healthcare professional, I
am to be true to the wishes of my patient then I cannot deprive her of the healthcare that she
requests and that is her right and entitlement under CEDAW. Balancing these two rights in a
jurisdiction where religious belief is often at the cornerstone of political and legislative action

26 See Ó Néill, Religion, Medicine and the Law (n 2).

27 Mary Neal and Sara Fovargue, ‘Is Conscientious Objection Incompatible with Healthcare Professionalism?’
(2019) 3 The New Bioethics 221–35.

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 Abortion and conscience

will be a challenge.The right to conscientiously object is not, of course, confined to the medical
arena. Indeed, Oderberg has demonstrated how medical conscience, from a matter of principle,
is no different to other types of conscience, but from a practical viewpoint, it continues to be a
pivotal driver in the conscientious objection debate.28
Savulescu’s seminal opposition to the right to conscientiously object bears consideration.
He recognises that deeply held religious beliefs can conflict, at times, with medical practice. He
argues that healthcare professionals cannot ‘make moral judgments on behalf of patients’29 and
makes reference to Shakespeare who said that ‘[c]onscience is but a word cowards use, devised
at first to keep the strong in awe’ (Richard III V.iv.1.7).30 Savulescu contends that ‘[i]f people
are not prepared to offer legally permitted, efficient, and beneficial care to a patient because it
conflicts with their values, they should not be doctors.’31 He further argues that conscientious
objection prioritises religious values over secular values and so ‘discriminates unfairly against
the secular.’32 He suggests that the protection of patients’ health is the main goal of healthcare
and outlines a number of constraints necessary to ensure that healthcare is legal, equitable, and
efficiently delivered.These constraints include the fact that patients are entitled to be aware of a
full range of available treatments, conscientious objectors must ensure that they do not compro-
mise the patient’s access to care, and a doctor who compromises the delivery of medical services
to patients due to their conscientious objection must be punished by removing their medical
licence.33 Savulescu contends:

Values are important parts of our lives. But values and conscience have different roles
in public and private life. They should influence discussion on what kind of health
system to deliver. But they should not influence the care an individual doctor offers to
his or her patient.The door to ‘value-driven medicine’ is a door to a Pandora’s box of
idiosyncratic, bigoted, discriminatory medicine. Public servants must act in the public
interest, not their own.34

Savulescu hits an awkward and ethically challenging nerve, which has been explored previously
by me in Religion, Medicine and the Law.The nerve that is sensitised is the moral dilemma that
exists when there is a need to balance the rights of the conscientious objector with the rights
of the patient. The only remedy that I see is to suggest that neither right can be negated and
the force of law must walk an ethically challenging tightrope where both rights are balanced,
precariously or otherwise.While Savulescu is correct in naming the ethical dilemma, recognis-
ing the rights of a conscientious objector does not constitute the opening of a Pandora’s box to
discriminatory medicine. In fact, the opposite would be true were such rights to be annulled.
The box that is opened when rights are balanced resembles more an Iliad-like journey that
needs to be taken by all the travellers on the quest for righteousness in this cause. But conscience
is not a silent walker!

28 David S Oderberg,‘How Special Is Medical Conscience?’ (2019) 3 The New Bioethics 207–20.
29 Julian Savulescu,‘Conscientious Objection in Medicine’ (2006) 332 BMJ 294–97.
30 ibid 294.
31 ibid 294.
32 ibid 295.
33 ibid.
34 ibid 297.

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 Clayton Ó Néill

Let us now revert to the less abstract arena where this moral question where an attempt is
made to resolve this conundrum in a practical way. The UK government’s recent report, the
2020 framework for abortion in NI, stated that this framework

will mirror the same statutory protection as under the Abortion Act 1967, meaning
no person shall be under any duty, whether by contract or by any statutory or other
legal requirement, to participate in any treatment authorised by the Regulations to
which the person has a conscientious objection.The only exception will be where the
participation in treatment is necessary to save the life or to prevent grave permanent
injury to the physical or mental health of a pregnant woman or girl.35

The UK government notes in its response to the consultation process that the majority of
people endorsed the provision of a conscience clause.36 The government cites the fact that a
large number of organisations wanted the conscience clause to be consistent with GB and
that this approach would ‘strike a reasonable balance between allowing health professionals
who do not wish to provide these services to opt out, whilst still enabling proper service
provision and patient care.’ Proponents of this approach, for the most part, argued that the
new law should be supported by professional guidance and that the conscience clause should
not cause any adverse impact to the women seeking an abortion.37 The government notes
that some respondents felt that they would not want conscientious objection to be extended
to include administrative or managerial staff. It also contends that some respondents disa-
greed with the implementation of a narrow approach to conscientious objection and that
a wide approach would be consistent with Article 9 ECHR. The government refers to the
fact that

[a] few respondents also voiced concern that healthcare workers with a conscientious
objection could face being discriminated against in the workplace without stronger
protections, with some respondents particularly concerned that this could potentially
leave some employees leaving their job, and that adequate protections and support
should also be in place for these employees.38

Ultimately, the UK government has concluded that the same approach to section 4 of the
Abortion Act 1967 would be taken in NI,

meaning no person shall be under any duty, whether by contract or by any statutory or
other legal requirement, to participate in any treatment authorised by the Regulations
to which the person has a conscientious objection.The only exception will be where
the participation in treatment is necessary to save the life or to prevent grave perma-
nent injury to the physical or mental health of a pregnant woman or girl.39

35 ibid 11.
36 HM Government, A New Legal Framework for Abortion Services in Northern Ireland: Implementation of the Legal Duty
under Section 9 of the Northern Ireland (Executive Formation etc.) Act 2019 UK Government Consultation Response
(March 2020) (n 23) 33.
37 ibid 32.
38 ibid 33.
39 ibid 33.

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They say that

anyone can opt out of participation in treatment of abortion services to which they
have a conscientious objection, but that this protection does not extend to the ancil-
lary, administrative and managerial tasks that might be associated with that treatment.40

The government claims that the conscientious objection must be restricted to the narrow inter-
pretation endorsed by the Supreme Court in Greater Glasgow Health Board v Doogan and Others
(Doogan).41 The precursor to Doogan was Janaway v Salford Health Authority (Janaway), which dealt
with a secretary who was assigned administrative duties, including referral letters for abortion,
that she felt interfered with the exercise of her conscience. At the House of Lords, it was held
that this was not the case because section 4 of the Abortion Act 1967 only covered those who
have a direct participation in the abortion and could not be extended to those with administra-
tive roles.42 Broadly, speaking, this finding was reiterated in Doogan. Midwives took a case where
they argued that the new rostering and administrative duties imposed upon them, due to the fact
that abortion services were offered in the units in which they worked, were an infringement of
section 4 of the 1967 Act.The Supreme Court stated that the ancillary roles of midwives were
insufficiently direct or hands-on, and that application of the ordinary meaning of ‘participate’
meant that section 4 could not be extended to include them. Much of the debate around Doogan
and the exercise of conscience has centred on the narrow definition of ‘participate.’ If a broader
definition of ‘participate’ were accepted, it is, however, probable that an infringement of the
right to exercise conscientious objection would have existed.
The UK government also argues that, if the conscience clause were widened, it would have
practical implications and undermine the provision of abortion in NI. It argued that if a wide
interpretation were in place, ‘fewer people providing ancillary services in relation to abortion
could result in fewer appointments and longer waiting times, creating de facto barriers to access,
and almost certainly adversely impacting the quality of care and standard of services.’The UK
government says that the approach in section 4 of the 1967 Act in GB is ‘human rights compli-
ant,’ ‘works satisfactorily in practice,’ and ‘is therefore appropriate to apply in Northern Ireland
to the provision of abortion services.’43
Let us return to the actual questionnaire.Two questions relating to conscientious objection
were included in the survey that was conducted as a primary vehicle to gauge public opinion
about the new legislation.44 This action served to gauge public opinion and to ensure that the
legislation, while complying with CEDAW, reflected as closely as possible a breadth of commu-
nity voice.A number of questions should now, I believe, be asked:Was the consultative approach
engaged in following the 2019 Act a suitable vehicle to engage with the question of conscien-

40 ibid 33.
41 Greater Glasgow Health Board v Doogan [2014] UKSC 68. I have analysed the Doogan judgment in the following
case review: Clayton Ó Néill,‘Conscientious Objection in Greater Glasgow Health Board v Doogan [2014] UKSC
68’ (2015) 15(4), Medical Law International 246–54.
42 See Ó Néill, Religion, Medicine and the Law (n 2) 181.
43 HM Government, A New Legal Framework for Abortion Services in Northern Ireland: Implementation of the Legal duty
under Section 9 of the Northern Ireland (Executive Formation etc.) Act 2019 UK Government Consultation Response
(March 2020) (n 23) 33.
44 HM Government, A New Legal Framework for Abortion Services in Northern Ireland: Implementation of the Legal Duty
under Section 9 of the Northern Ireland (Executive Formation etc.) Act 2019 (n 22).

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tious objection from a human rights perspective? If not, what sort of consultative approach
would have been better?
While this consultative process in the North does allow for voices to be heard on different
sides of this contentious debate, there remain problems with this approach. The starting point
for this was one that was thrust upon participants because of the fact that Stormont was not
operating and that this legislation was imposed upon the jurisdiction of NI, without support
from many of its public representatives. A perception of forcing the hand was shared amongst
people of all political beliefs. In theory, a better starting point for this action would have been the
conducting of a Citizens’Assembly, as in the Irish Republic, prior to deciding upon a change in
the law. However, it must also be stated that it is possible that, given the divisive and sometimes
corrosive nature of aspects of Northern Irish political life, such an Assembly might not have
ever worked and the whole idea of legislative change could have hijacked by the Orange/Green
political divide, much as happened to the COVID-19 debate pertaining to school closure at an
early point in the pandemic.45
It is not sufficient to just conduct surveys and analyse answers to questionnaires. This does
not give voice to those who agitate for the rights of women and, equally, for those whose
concern is for the unborn. Neither, in my view, was given an equitable chance in this consul-
tation process to give this issue the solemnity and seriousness that it deserves. The timeframe
for response to the survey was far too limited. Roughly one month was given for citizens to
respond.This period contrasts with the allocated 18-month period, which had been extended
from one year, in the Republic, as part of the Citizens’ Assembly. This leads to the conclusion
that the survey approach used was problematic and should have been broadened to include an
open forum consultative process.
The questions posed pertaining to conscientious objection in this survey were as follows:

Question 11: Do you agree that the proposed conscientious objection provision should
reflect practice in the rest of the United Kingdom, covering participation in the whole
course of treatment for the abortion, but not associated ancillary, administrative or
managerial tasks?

This broadly asks whether NI should adopt practice vindicated in the Doogan judgment of
allowing for the narrow interpretation of participation in abortion.

Question 12: Do you think any further protections or clarification regarding conscien-
tious objection is required in the regulations?

In order to illustrate the difficulties involved in achieving consensus about conscientious objec-
tion, the answers to questions 11 and 12 from two ideologically diverging organisations are
now considered, i.e. Catholic Bishops of NI and Amnesty International. Not surprisingly, the
Catholic Bishops of NI were very unhappy about the change in the law and regard it as an
‘unjust law.’They argued that ‘[a]s a consequence, no one is obliged in conscience to cooperate
with any action permitted by this law which directly and intentionally leads to the killing of an
unborn child. Indeed, everyone is morally obliged to oppose this law by conscientious objec-

45 See, for example, Michael McHugh, ‘Michelle O’Neill Calls for Northern Ireland Schools to Close Over
Coronavirus’ (Belfast Telegraph, 13 March 2020) www.belfasttelegraph.co.uk/news/northern-ireland/michelle
-oneill-calls-for-northern-ireland-schools-to-close-over-coronavirus-39042109.html accessed 31 March 2020.

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tion.’ The Catholic Bishops placed a strong focus on the concept of conscientious objection
and argued that all healthcare professionals (including pharmacists) and ancillary staff should
have the ‘right to refuse to participate’ in anything to do with abortion procedures.This posi-
tion is wider than the approach taken to conscientious objection by the UK Supreme Court
in Doogan.The Catholic Bishops recognise the narrow definition accepted in Doogan, but state
that this applied to the Abortion Act 1967 and falls outside the context of NI.They said that a
conscientious objection clause should be much wider and should reflect the stronger views in
NI.They claimed that this would comply with Article 9 ECHR – freedom of religion, thought,
and conscience.The Catholic Bishops also argued that

[r]eferral to another health professional who does not have a conscientious objec-
tion to abortion services, is not an option for a health provider who is a Christian,
since in those circumstances, he or she would still be co-operating in the process to
access abortion services. Therefore, the New Regulatory Framework needs to make
provision for an alternative referral procedure when health professionals with a con-
scientious objection to abortion find themselves in a situation where the woman has
decided that she wants access to abortion services.46

This approach vindicates fully the right of the medical professional to consciously object to
abortion. It calls for a widening of the application of ‘participate’ beyond the scope of Doogan
and, indeed, this will be shown later in this chapter to be a valid call. However, the lack of
commitment by the Catholic Bishops to referral services goes too far. It is a wholly impractical
stance and includes a complete failing in the duty to refer.
Amnesty International has provided diverging answers to questions 11 and 12, as posed in
the consultation.47 When asked if NI should follow the approach taken in England, Scotland,
and Wales, which would involve a very narrow definition of participation (thus, excluding ancil-
lary/administrative staff from conscientious objection), Amnesty International argued that if
there is a conscience clause, that it should follow the narrow definition provided for in Doogan.
Ultimately, Amnesty International is not very pro-conscientious objection and claims that the
term ‘conscience-based refusal to provide care’ ought to be used instead.Amnesty International
refers to CEDAW, General Recommendation No 24 (Article 12 of the Convention (Women
and Health), para 11):

Measures to eliminate discrimination against women are considered to be inappropri-

ate if a health-care system lacks services to prevent, detect and treat illnesses specific to
women. It is discriminatory for a State party to refuse to provide legally for the perfor-
mance of certain reproductive health services for women. For instance, if health service
providers refuse to perform such services based on conscientious objection, measures
should be introduced to ensure that women are referred to alternative health providers.

46 Response to the Consultation on ‘A New Legal Framework for Abortion Services in Northern Ireland’ from the Catholic
Bishops of Northern Ireland (17 December 2019) www.catholicbishops.ie/2019/12/17/response-to-the-consultati
on-on-a-new-legal-framework-for-abortion-services-in-northern-ireland-from-the-catholic-bishops-of-northe
rn-ireland/ accessed 30 March 2020.
47 Amnesty International, Response to Northern Ireland Office: A New Legal Framework for Abortion Services in Northern
Ireland (December 2019) www.amnesty.org.uk/files/Amnesty%20International%20Response%20to%20NIO
%20Dec%202019.pdf accessed 30 March 2019.

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 Clayton Ó Néill

While Amnesty International’s response supports the autonomous rights of women in accord-
ance with human rights, it fails to grasp the central importance of conscientious objection
as a human right. Acting in accordance with conscience manifests an intrinsic belief that is
integral to personhood and self, and cannot be negated in the simplistic fashion that is pro-
posed here.
These two sets of responses to the same questions serve to illustrate the points of view that
might be found on each extreme of this perspective.There will be many healthcare profession-
als who have no objection to being directly or indirectly involved in the provision of abortion
services in NI. They will hold fast to their view that a woman has a right to make decisions
for herself about herself.There are other healthcare professionals, however, who, often because
of their religious belief, do not wish to participate in the provision of abortion.The Abortion
Act 1967 allows such people who have a direct role in abortion provision to conscientiously
object in GB, as long as they fulfil referral procedures.The Doogan judgment did not allow for
the extension of conscientious objection to indirect provision. In light of the societal context
of NI, I suggest that a broader interpretation of ‘participate’ should have been adopted in the
Abortion (Northern Ireland) Regulations 2020, along the lines of that requested, but refused,
in the Doogan case.This would have allowed for those with both direct and indirect roles in the
provision of abortion services to conscientiously object and for that conscientious objection to
be upheld. The right to conscientiously object would, however, need to be supplemented by
an obligation to refer to a suitably qualified practitioner. This duality of approach would have
ensured that two rights are protected.
There is no compulsion upon the legislature in NI to follow Doogan because Doogan related
to section 4 of the Abortion Act, which does not apply in NI. At a practical level, there is, thus,
no need to hold by the precepts of Doogan. On a principled level, there is a need to ensure that
the scope of conscientious objection is widened: those who have a direct or indirect connection
to abortion provision should be allowed to exercise their conscience if their right to freedom,
conscience and religion, as protected under Article 9 ECHR, is infringed. As I have previously
argued, the use of Article 9 in Doogan was insufficiently applied but should now be at the cor-
nerstone of the new legislation. Article 9(1) ECHR is a right that quite obviously includes the
right to manifest religion or belief in ‘practice and observance.’The freedom to act in accord-
ance with religious belief in healthcare practice and in the ‘observance’ of healthcare procedures
is given visible protection here, and the right to conscientiously object to participation, even at a
remover, in abortion is surely protected here.This protection is, however, qualified by the limita-
tions that apply to Article 9(2), namely that the manifestation of religious belief ‘shall be subject
only to such limitations as are prescribed by law and are necessary in a democratic society, in the
interests of public safety, for the protection of public order, health or morals, or for the protec-
tions of the rights and freedoms of others.’This limitation leads to the conclusion that a duty to
refer should also apply in this legislation.This provision would balance the right of the medical
practitioner to conscientiously object with the equally grave obligation to act for the patient.
This duty to refer counters any argument that conscientious objection is limited by Article 9(2).
Even if an argument were articulated that conscientious objection involves an infringement of
the rights and freedoms of others, that position is counterbalanced by the pragmatism associated
with the duty to refer.The same argument applies to those who contest that the duty of a doctor
to a patient trumps any conscientious objection.This argument also negates the importance of
conscientious objection as a freedom within society that is valued and valuable as a constant that
affirms the right of a human being to act in accordance with an informed conscience. Surely,
this right should be one that is not confined to those who participate in an abortion from a

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narrow perspective.The arguments in favour of conscientious objection in Janaway48 were lost,

as was the case in Doogan. The legislative context should not be an impediment to the decision-
making process but should support the duality of rights – those of the conscientious objector
and those of the patient. Of course, there will always be that allegation that ‘conscience does
make cowards of us all’ and that acting in accordance with conscience means deviating from
duty to the patient.49 But there is also the parallel argument that if we cannot in accordance with
our conscience, then we cannot act at all.
Using Doogan as a vindication of supporting the narrow interpretation of participation in
abortion is actually incorrect. It is important to state here quite categorically that the Doogan
judgment focused on the interpretation of ‘participate’ within section 4 of the Abortion Act
1967. That was the only scope envisaged within this judgment. The 1967 Act does not apply
to NI and, therefore, the findings of Doogan are, equally, inapplicable, except by indirect exten-
sion. Deciding who should be allowed to act in accordance with their conscience should, thus,
not be aligned be with this judgment, but should be aligned to other legal and societal realities
that pertain to the jurisdiction of NI. Given that 79% of the population who responded to the
consultation were opposed any change in the law, it is likely that many of the staff who are
not involved directly with abortion provision, but will have an indirect connection to it would
likely want to conscientiously object.The UK government looked for consistency between the
approach to conscientious objection between NI and GB. However, the NI jurisdiction is not
the same as that of GB in many practical and historical ways, and many of its practices differ.The
fact that very many people in NI attest to having a religious belief that is explicitly anti-abortion
in its reasoning is one factor of difference between NI and GB, and it is not unreasonable to
expect that religious belief should be given some additional weight in determining who can
conscientiously object.
There is a discernible gap between the opinions voiced by very many respondents in the
consultative process and the Abortion (Northern Ireland) Regulations 2020 that have come into
being.This relates, in particular, to the issue of conscientious objection. It is not clear the degree
to which the weight of opinions in the consultation surveys was considered. What appears to
be more likely is that the government acted in accordance with CEDAW, but manifestly gave
insufficient consideration to the fact that NI’s citizens would value a broader interpretation of
participation in abortion than was decided upon and implemented in the Regulations. The
fact that the government might have done so because of a desire to comply with the Supreme
Court’s findings in a case that was not directly relevant in this jurisdiction is regrettable. This
may have been the simpler option for the UK government, but it does negate the desire of many
healthcare professionals to extend the conscience clause beyond a very limited few.

Conclusion
It is timely now to summarise the main points of this chapter.We are now at a crossroads in NI.
A new Act of Parliament, the Northern Ireland (Executive Formation) Act 2019, was instigated

48 Janaway v Salford Health Authority [1989] AC 537. This was a precursor House of Lords case to Doogan (n 41),
where ‘participate’ in abortion in Section 4 of the Abortion Act 1967 was given a narrow interpretation, where
participation was confined to those who had a hands-on role in the abortion.This, therefore, excluded a secretary
who refused to write a referral letter as she claimed that it adversely interfered with her conscience.
49 William Shakespeare, edited by Roma Gill, Hamlet (1601) Act 3, Scene 1 (Oxford University Press 1992) 68.

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 Clayton Ó Néill

by the British government in the absence of a functioning Executive in NI. In order to comply
with the CEDAW report, the provisions of the 2019 Act and the resulting future Northern
Irish legislation significantly widen the scope of abortion services in NI.The decision, made in
Westminster, to change the law on abortion found support amongst some. However, broadly
speaking, it was introduced against the wishes of many members of Northern Irish political par-
ties and the societies represented by them. Some of those working in healthcare settings might
now have to become involved in practical managerial tasks and administrative roles connected
to abortion provision that could impinge upon their religious beliefs, which inform their con-
science.
This chapter looked specifically at the issue of conscientious objection and provided guid-
ance for the drafters of legislation as to how provisions to support the exercise of conscience
could be included in the forthcoming legislation in a manner that is compliant with human
rights norms and laws. The research drew upon the recent experience of the Irish Republic
in terms of the repeal of the 8th Amendment of the Constitution. It criticises the survey-
based consultative forum that was adopted by the Secretary of State for NI as the primary
basis of engaging with society, with a view to finding commonalities of perspective in relation
to this issue. I argue that the approach taken to the exercise of conscience in UK Supreme
Court in Doogan is inappropriate in NI because the issue adjudicated on in this case related to
the Abortion Act 1967, which does not apply in NI. Using the narrow version of participa-
tion in relation to conscientious objection is, equally, inappropriate given the deeply held reli-
gious belief of a large sector of the population. Section 12 of the Abortion (Northern Ireland)
Regulations 2020 has, as a consequence, the potential to constitute a derogation of freedom of
religion, thought, and conscience.
While this chapter has dealt with the issue of conscientious objection as it applies primarily
in the island of Ireland, it is, nonetheless, a question that has application and implication in the
global contexts where this right is questioned, derided, accepted, and applied according to the
strength of political, legal, and medical support that is given to this right, and the force of reli-
gious beliefs or comprehensive values that underpin or do not underpin governance.The fact
that conscientious objection may not be seen in some jurisdictions to have primacy of impor-
tance does not mean that this right is valueless. Surely, if a right to health is something that is
prized and to be supported, then what must also be supported is the individual right to object
to medical provision that flies in the face of individual conscience. If the right of the individual
is denied, then there is a dilution of the concept of a right to health and that dilution would,
itself, become a Pandora’s box where the accoutrements of the box would comprise of deroga-
tion of a right, lack of respect for the views and values of healthcare professionals and staff, and
the consequent ultimate compromising of justice itself.

References
Amnesty International, Response to Northern Ireland Office: A New Legal Framework for Abortion Services in
Northern Ireland (December 2019) www.amnesty.org.uk/files/Amnesty%20International%20Resp
onse%20to%20NIO%20Dec%202019.pdf accessed 30 March 2019.
de Londras, Fiona and Enright, Máiréad, Repealing the 8th (Policy Press 2018).
Enright, Máiréad,‘“The Enemy of the Good”: Reflections on Ireland’s New Abortion Legislation’ (2018)
8(2) feminists@law https://journals.kent.ac.uk/index.php/feministsatlaw/article/view/658/1333
accessed 30 March 2020.
HM Government, A New Legal Framework for Abortion Services in Northern Ireland: Implementation of the Legal
Duty under Section 9 of the Northern Ireland (Executive Formation etc.) Act 2019 UK (4 November 2019)
www.gov.uk/government/consultations/a-new-legal-framework-for-abortion-services-in-northern
-ireland accessed 31 March 2020.

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 Abortion and conscience

HM Government, A New Legal Framework for Abortion Services in Northern Ireland: Implementation of the
Legal Duty under Section 9 of the Northern Ireland (Executive Formation etc.) Act 2019 UK Government
Consultation Response (March 2020) https://assets.publishing.service.gov.uk/government/uploads/syste
m/uploads/attachment_data/file/875380/FINAL_Government_response_-_Northern_Ireland_ab
ortion_framework.pdf accessed 31 March 2020.
McHugh, Michael, ‘Michelle O’Neill Calls for Northern Ireland Schools to Close Over Coronavirus’
(Belfast Telegraph, 13 March 2020) www.belfasttelegraph.co.uk/news/northern-ireland/michelle-on
eill-calls-for-northern-ireland-schools-to-close-over-coronavirus-39042109.html accessed 31 March
2020.
Neal, Mary and Fovargue, Sara,‘Is Conscientious Objection Incompatible with Healthcare Professionalism?’
(2019) 3 The New Bioethics 221–35.
Ní Ghráinne, Bríd and McMahon,Aisling,‘Abortion in Northern Ireland and the European Conventions on
Human Rights: Reflections from the UK Supreme Court’ (2019) 68(2) International and Comparative
Law Quarterly 477–94.
Ó Néill, Clayton, ‘Conscientious Objection in Greater Glasgow Health Board v Doogan [2014] UKSC 68’
(2015) 15(4), Medical Law International 246–54.
Ó Néill, Clayton, Religion, Medicine and the Law (Routledge 2018).
Oderberg, David S,‘How Special Is Medical Conscience?’ (2019) 3 The New Bioethics 207–20.
Committee on the Elimination of All Forms of Discrimination Against Women, Report of the Inquiry
Concerning the United Kingdom of Great Britain and Northern Ireland under Article 8 of the Optional Protocol
to the Convention on the Elimination of All Forms of Discrimination Against Women (CEDAW/C/OP.8/
GBR/1) published on 6 March 2018 https://tbinternet.ohchr.org/Treaties/CEDAW/Shared%20Do
cuments/GBR/INT_CEDAW_ITB_GBR_8637_E.pdf accessed 01 April 2020.
Response to the Consultation on ‘A New Legal Framework for Abortion Services in Northern Ireland’ from the
Catholic Bishops of Northern Ireland (17 December 2019) www.catholicbishops.ie/2019/12/17/response
-to-the-consultation-on-a-new-legal-framework-for-abortion-services-in-northern-ireland-from-the
-catholic-bishops-of-northern-ireland/ accessed 30 March 2020.
Savulescu, Julian,‘Conscientious Objection in Medicine’ (2006) 332 BMJ 294–97.
Shakespeare, William, Hamlet (1601) Act 3, Scene 1 (Oxford University Press 1992, edited by Roma Gill).
Todd, Jennifer, Identity, Change after Conflict: Ethnicity, Boundaries and Belonging in the Two Irelands (Palgrave
Macmillan 2018).

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 8
THE STANDARD OF CARE
AND IMPLICATIONS FOR
PAEDIATRIC DECISION-MAKING
The Swedish viewpoint

Santa Slokenberga

Why the standard of care and paediatric decision-

making is a right-to-health concern
One of the fundamental elements of the right to the highest attainable standard of health (right
to health) is healthcare that meets the availability, accessibility, and acceptability standard and is
of appropriate quality.1 However, whether and how this standard can be met greatly depends on
a number of circumstances that stretch well beyond the traditional resource dimension which
accepts the gradual realisation of the right.2 It is based first and foremost on the question of what
is the medical care that is scientifically possible and legally permissible to be made available to
specific patient groups and individual patients in need.
Children are often described as a vulnerable and diverse population group which requires
particular protection under the United Nations Convention on the Rights of the Child (CRC).3
Regarding health, Article 24 of the CRC requires that ‘the enjoyment of the highest attainable
standard of health and to facilities for the treatment of illness and rehabilitation of health’ shall

1 See, for example, UN Committee on Economic, Social and Cultural Rights (CESCR), General Comment No 14:
The Right to the Highest Attainable Standard of Health (Art 12 of the Covenant), 11 August 2000, E/C.12/2000/4, at
paras 12, 19, 35; UN Committee on the Rights of the Child, General Comment No 15: On the Right of the Child to
the Enjoyment of the Highest Attainable Standard of Health (Art 24), 2013, CRC/C/GC/15, at para 116.
2 See Article 2 ICESCR and CESCR, General Comment No 3:The Nature of States Parties’ Obligations (Art 2, para
1, of the Covenant), 14 Dec 1990. See also UN Committee on Economic, Social and Cultural Rights, General
Comment No 14: The Right to the Highest Attainable Standard of Health (Art 12 of the Covenant), 11 August 2000,
E/C.12/2000/4, at para 30.
3 See Article 1 of the Convention on the Rights of the Child (adopted 20 November 1989, entered into force 2
September 1990) 1577 UNTS 3. However, as argued by Herring using the universal vulnerability theory, children
are not the only vulnerable group in cases of complex medical decision-making. Jonathan Herring,‘Vulnerability
and Medical Decisions Concerning Children’ in Imogen Goold, Jonathan Herring and Cressida Auckland (eds),
Parental Rights, Best Interests and Significant Harms: Medical Decision-Making on Behalf of Children Post-Great Ormond
Street Hospital v Gard (Hart Publishing 2019) 191–206.

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be recognised for children. Despite this call for recognition, which from the international law
perspective is a treaty obligation on the CRC’s parties, children as a class across the globe often
lack scientifically appropriate medical care. Consequently, they risk being exposed to risky inter-
ventions, such as those related to off-label medicinal products.4 That applies to interventions that
range from intensive care unit treatments to outpatient care and is a problem that many, if not
all, countries around the world face.5
A central challenge to such medical care that has not been adequately scientifically tested
and recognised as appropriate for a paediatric patient group relates to decision-making. First,
it relates to decisions that lie with medical professionals who are in a position to make clinical
decisions about a particular case with due regard to the applicable standards that steer profes-
sional decision-making. Second, it relates to decisions about a child who is in need of medical
care and whose integrity thereby is at stake. Generally, many groups of children do not have the
capacity to decide what is in their best interests and make legally binding decisions about their
own medical care. Moreover, they might have highly limited capacity to form views and express
them, due to their young age or medical condition, thereby making themselves adequately
heard.6 From both the medical as well as legal perspective, arguably, the most vulnerable in this
regard are critically ill infants.7
Parents as primary carers have a duty to care for a child and make decisions regarding a child’s
medical care, subject to some public control to ensure that the child’s rights are safeguarded.8
At the same time, others also involved in the care shall ensure that ‘best interests’ are followed.
However, what is in the best interests of such children, in particular, seriously ill children, is not
easy to answer. Not only is the notion of best interests difficult to settle upon in each case, but
its susceptibility to interpretation creates considerable room for conflicts to emerge.9 While there
are straightforward medical decision-making cases, there are also complex ones that require
careful assessment of the provided medical information and balance of risks the child can be
subjected to for a certain chance to get the intended medical benefit. In either case, the concepts
of informed consent/assent to medical care heavily rely on the information provided by the

4 In 2007, the EU introduced a paediatric investigation plan.This plan, however, covers drugs only.The recent assess-
ment shows improvement in the development of new paediatric drugs and new paediatric indications. See https
://ec.europa.eu/health/sites/health/files/files/paediatrics/2016_pc_report_2017/ema_10_year_report_for_co
nsultation.pdf, 10–17, accessed 4 August 2020.
5 Joana Magalhães and others, ‘Use of Off-Label and Unlicenced Drugs in Hospitalised Paediatric Patients: A
Systematic Review’ (2015) 71 European Journal of Clinical Pharmacology 1. See also Eva Skovslund Nielsen and
others, ‘Off-Label Prescribing of Psychotropic Drugs in a Danish Child and Adolescent Psychiatric Outpatient
Clinic’ (2016) 25 European Child & Adolescent Psychiatry 25.
6 See UN General Assembly, Convention on the Rights of the Child, 20 November 1989, United Nations,Treaty
Series, vol 1577, p 3, art 12.
7 See Elin Kimland and Viveca Odlind,‘Off-Label Drug Use in Pediatric Patients’ (2012) 91 Clinical Pharmacology
& Therapeutics 796, 799.
8 Under the CRC, in accordance with Article 3 the standard is the child’s best interests. As follows from Article 5,
the responsibilities, rights, and duties of parents shall be respected.This means that a state is expected to intervene
when parents do not act in the best interests of their children. However, in scholarship in regard to this state inter-
vention, a significant harm threshold has also been discussed. See Douglas Diekema,‘Parental Refusals of Medical
Treatment:The Harm Principle as Threshold for State Intervention’ (2004) 25 Theoretical Medicine and Bioethics
243. For more recent analysis see Imogen Goold, Jonathan Herring, and Cressida Auckland (eds), Parental Rights,
Best Interests and Significant Harms: Medical Decision-Making on Behalf of Children Post-Great Ormond Street Hospital v
Gard (1st edn, Hart Publishing 2019).
9 For example, LM Kopelman, ‘The Best-Interests Standard as Threshold, Ideal, and Standard of Reasonableness’
(1997) 22 The Journal of Medicine and Philosophy 271.

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 Santa Slokenberga

respective medical professional, and thus the available knowledge, thresholds of disclosure, and
standard of care.10
There is a thick layer of legal instruments safeguarding the right to health. However, there
are neither internationally binding requirements regarding the standard of care that shall be
made available to children, nor commonly agreed guidelines on what medical care meets the
standard, nor is there consensus about what constitutes adequate quality of medical care to be
offered to patients. In 2017, the Council of Europe (CoE) undertook an in-depth examination
of how the existing medical practices and new biomedical interventions challenge children’s
rights.11 Although it resulted in some important outcomes12 and is part of the CoE focus for
2020–2025,13 a comprehensive response to governing paediatric medical care has not yet mate-
rialised. In the absence of such standards, the national legal orders have considerable discretion
in making these decisions.
Sweden is an example of a country that has assumed a number of international commit-
ments in this area whilst also clearly ignoring them.14 The national law prescribes the standard of
care that must be met in order for medical interventions to be offered to children and thereby
steer medical decision-making. However, the nature of the care that meets the standard is rather
ambiguous. This could have far-reaching implications for the protection of a child’s integrity
and validity of consent to medical care as a central component in enabling lawful medical care.
This chapter takes a Swedish viewpoint and examines the governance of standard of care and
its implications in paediatric decision-making. It begins by examining the interplay between
health and integrity from the human rights and European Union (EU) law perspective. As
both international human rights law and Swedish law emphasise the importance of professional
standards, prior to providing detailed insights into the Swedish national law the chapter consid-
ers the medical profession’s approach to setting the standard of medical care.Then it moves on
to analysing how Sweden has addressed the question of standard of care for children and pae-
diatric decision-making. It sheds light on the limited role that parents have as primary carers in
medical decision-making under the best interests standard and argues for the need to establish
clear mechanisms for reviewing the standard of medical care, thus adopting a transparent and
verifiable approach to protecting integrity.

10 For insights into the information obligation from a Swedish perspective, see Elisabeth Rynning, ‘Samtycke till
Medicinsk Vard Och Behandling: En Rattsvetenskaplig Studie’ (Uppsala University 1994) 185–276, in particu-
lar, 197–238. For analysis under the current legislation, see Jameson Garland, On Science, Law, and Medicine:The
Case of Gender-‘Normalizing’ Interventions on Children Who Are Diagnosed as Different in Sex Development (Uppsala
University 2016) 293–322.
11 See Kavot Zillén, Jameson Garland, and Santa Slokenberga,‘The Rights of Children in Biomedicine: Challenges
Posed by Scientific Advances and Uncertainties’ (Council of Europe 2017). Ton Liefaard, Aart Hendriks, and
Daniella Zlotnik, ‘From Law to Practice: Towards a Roadmap to Strengthen Children’s Rights in the Era of
Biomedicine’ (Council of Europe 2017).
12 Arguably, the most important is Parliamentary Assembly Resolution 2191 (2017) Promoting the human rights of
and eliminating discrimination against intersex people.
13 Strategic Action Plan on Human Rights and Technologies in Biomedicine (2020–2025), Adopted by the
Committee on Bioethics at its 16th meeting (19–21 November 2019) https://rm.coe.int/strategic-action-plan
-final-e/16809c3af1. See further, Laurence Lwoff,‘New Technologies, New Challenges for Human Rights? The
Work of the Council of Europe’ (2020) 1 European Journal of Health Law 1.
14 Arguably, the most explicit case is gender assignment surgeries on intersexed infants. See Jameson Garland and
Santa Slokenberga, ‘Protecting the Rights of Children with Intersex Conditions from Nonconsensual Gender-
Conforming Medical Interventions:The View from Europe’ (2019) 27 Medical Law Review 482.

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 Paediatric care decision-making

When civil and political rights meet social and economic rights
On the interplay between civil and political and social and economic rights
For many good reasons, human rights, at least to some degree, have drifted away from the
traditional dichotomy of civil and political rights on the one hand, and social and economic
and cultural rights on the other that can be found in international and regional human rights
regimes.15 Instead, the focus is on the indivisibility, interdependence and interrelatedness of these
rights, which are reflected, for example, in the CRC,16 and can be linked back to how human
rights were handled under the Universal Declaration of Human Rights (UDHR).Also, the EU,
at least on the surface, has taken a similar approach and the Charter of Fundamental Rights of
the European Union (CFREU) sets forth both of these groups of rights, while at the same time
steering their implementation through specific norms and requirements.17
Although it is not an easy task to escape the politically motivated distinctions between the
two groups of human rights, bodies within the United Nations (UN)18 as well as the CoE have
found ways to create synergies between provisions requiring protection for health as part of
the social and economic rights, and provisions safeguarding integrity as part of the civil and
political rights.19 Analysis of the requirements relevant to paediatric medical care that stem from
these treaties, as well as insights into the requirements that are set forth in EU law, could offer
a valuable basis for exploring how Sweden’s international requirements govern the standard of
paediatric care.

How do external actors shape internal health obligations?

Protection of integrity is commonly expressed through the provisions of right to life, the pro-
hibition from torture, and protection of privacy or private life, all of which could be said to be
anchored on the principle of human dignity. Between the prohibition of torture and medicine is
a rather complex relationship that is beyond the limits of this contribution. It suffices to note, as
follows from European Court of Human Rights (ECtHR) case law, that only exceptionally does
the question of medical care trigger the application of Article 3 of the European Convention

15 International Covenant on Civil and Political Rights (ICCPR) and International Covenant on Economic, Social
and Cultural Rights (ICESCR) in the UN system, as well as ECHR and (revised) European Social Charter
(ESC) in the Council of Europe system. However, early on the CESCR had already drawn attention to chal-
lenges related to this split. See CESCR, Draft general comment No. 9: The domestic application of the Covenant,
E/C.12/1998/24, 3 December 1998, para 10.
16 However, for the sake of accuracy it has to be noted that it was adopted before the 1993 Vienna Declaration of
the World Conference on Human Rights. Audrey R Chapman, ‘The Divisibility of Indivisible Human Rights’
(University of Connecticut, Human Rights Institute 2009). See also Eibe Riedel, Gilles Giacca, and Christophe
Golay,‘The Development of Economic, Social, and Cultural Rights in International Law’ in Eibe Riedel, Gilles
Giacca and Christophe Golay (eds), The Development of Economic, Social, and Cultural Rights in International Law
(Oxford University Press 2014) 6.
17 Here it suffices to note two peculiarities. First, as can be derived from Article 51.1 of the CFREU, it applies only
in so far as the EU law applies. Second, the same provision mandates ‘respecting’ rights and ‘observing’ principles.
However, which provisions contain rights and which contain principles remains somewhat ambiguous.
18 For example, Human Rights Committee, General Comment No 36, Article 6: right to life, 3 September 2019,
CCPR/C/GC/36.
19 See Vasileva v Bulgaria,App no 23796/10 (ECtHR, 17 March 2016) [63]. See also Case of Centre for Legal Resources
on behalf of Valentin Câmpeanu v Romania,App no 47848/08 (ECtHR, 17 July 2014) [130]. See also Lopes de Sousa
Fernandes v Portugal, App no 56080/13 (ECtHR, 10 December 2017) [165].

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on Human Rights (ECHR).20 A similar approach could be said to relate to the text and his-
torical development of Article 7 of the International Covenant on Civil and Political Rights
(ICCPR).21 However, at the same time one should acknowledge that the interplay between
prohibition of torture, inhuman and degrading treatment, and substandard medical care has not
been adequately explored. Nonetheless, under the ECHR as well as the ICCPR, involvement
in scientific research without valid consent is a clear violation of this prohibition.22
Human rights standards place obligations on the national legal orders not only to refrain
from actions that interfere with the enjoyment of the right to privacy and life but also to take
measures to ensure that these rights are protected.The Human Rights Committee, in regard to
Article 6 ICCPR which ensures protection of life, has emphasised the need for medical care
to be an element of the state’s obligation to ensure this right.23 The ECtHR has been reluctant
to grant rights to access certain care that a state has not committed to provide24 and to engage
substantive limbs of the ECHR provisions in cases that it classifies as ‘mere’ malpractice cases,
as elaborated in the case of Lopes de Sousa Fernandes v Portugal.25 However, it has been firm in
mandating that adequate mechanisms are put in place to safeguard the rights that are protected
under the convention, and this also applies to the area of medical care.26 In a number of cases,
the ECtHR has emphasised that principles stemming from Article 2 ECHR apply in the public
health sphere too and that states are required to make regulations that compel hospitals, whether
public or private, to adopt appropriate measures for the protection of their patients’ lives.27 As
the ECtHR already indicated early on in the admissibility decision of William and Anita Powell
against the United Kingdom and continues to reiterate, this obligation includes that ‘a Contracting
State has made adequate provision for securing high professional standards among health pro-
fessionals and the protection of the lives of patients.’28 These principles also apply to obligations
stemming from Article 8 ECHR29 and include assessment of the existence of a framework that

20 For example, lack of adequate care when the state was responsible to provide it when a person has been in cus-
tody. See, for example, Vasyukov v Russia,App no 2974/05 (ECtHR, 5 April 2011).
21 Preparatory works to the covenant considerably focus on the experimentation. See Marc J Bossuyt and John
P Humphrey, Guide to the ‘Travaux Preparatoires’ of the International Covenant on Civil and Political Rights (M.
Nijhoff 1987). However, at the same time, the General Comment notes that ‘article 7 protects, in particular, chil-
dren, pupils and patients in teaching and medical institutions.’ UN Human Rights Committee (HRC), CCPR
General Comment No 20: Article 7 (Prohibition of Torture, or Other Cruel, Inhuman or Degrading Treatment
or Punishment), 10 March 1992, para 5.
22 For a violation of Article 3 ECHR, see Bataliny v Russia, App no 10060/07, judgment 23 July 2015, para 90.
For a conflict with Article 7 ICCPR, see UN Human Rights Committee (HRC), CCPR General Comment
No 20: Article 7 (Prohibition of Torture, or Other Cruel, Inhuman or Degrading Treatment or Punishment), 10
March 1992, para 7.
23 See Human Rights Committee, General Comment No 36, Article 6: right to life, 3 September 2019, CCPR/C/
GC/36, paras 25–26.
24 See, for example, Valentina Pentiacova and Others against Moldova, App no 14462/03 (ECtHR, admissibility deci-
sion, 4 January 2005).
25 See Lopes De Sousa Fernandes v Portugal, App no 56080/13 (ECtHR, 17 December 2019), paras 185–96, in par-
ticular paras 191–94.
26 Under Article 2, see Fernandes De Oliveira v Portugal, App no 78103/14 (ECtHR, 31 January 2019), para 192.
Under Article 8, see Asiye Genç v Turkey,App no. 24109/07 (ECtHR, 27 January 2015) [67], [74]–[87].
27 Calvelli and Ciglio v Italy, App no 32967/96 (ECtHR, 17 January 2002) [49]. See also Vo v France, App no
53924/00 (ECtHR, 8 July 2004) [88].
28 William and Anita Powell against the United Kingdom App no 45305/99 (ECtHR, admissibility decision 4 May
2000), p 18. For a more recent application see, for example, Rõigas v Estonia (Application no. 49045/13), 12
September 2017, [101].
29 See, for example, Erdinç Kurt and Others v Turkey,App no 50772/11 (ECtHR, 6 June 2017) [51].

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 Paediatric care decision-making

protects patients’ physical integrity and whether the respective legislative and statutory frame-
works have been properly implemented.30 To date, the ECtHR has not required that care be of a
specific standard, and where the question of the standard has been at the core of a case brought
before the court, it has successfully escaped tackling this question in greater detail.31
EU law cannot be said to place more comprehensive obligations either. Given the economic
origins of the EU, the content of Article 168.7 Treaty on the Functioning of the European
Union (TFEU) is hardly a surprise to anyone.32 It declares that the EU shall respect the responsi-
bilities of the member states for the definition of their health policy and for the organisation and
delivery of health services and medical care. Among the responsibilities that the member states
retain is the management of health services and medical care and the allocation of the resources.
Throughout the case law, the Court of Justice of the European Union (CJEU) has persistently
affirmed this liberty and intervened only when a member state is not providing the care it had
committed to provide, including when the quality of care has been the issue.33 Furthermore,
even though the first sentence of Article 35 of the CFREU states,‘[e]veryone has … the right to
benefit from medical treatment,’ this obligation, as acknowledged in the same sentence, is subject
to ‘the conditions established by national laws and practices.’34 Nonetheless, as elaborated in the
following regarding quality, this does not mean that the EU has not contributed to shaping rules
relevant for the provision of care.

Quality matters, but what is quality?

Quality as part of the highest attainable standard of health

The right to the highest attainable standard of health is set forth in Article 12 of the International
Covenant on Economic, Social and Cultural Rights (ICESCR) and can be found in group-
specific human rights treaties, including the already noted Article 24 of the CRC. One of the
key components of this right is quality of medical care.35 In legal scholarship on the right to
health, quality is commonly addressed as one of the four key components of the right to health.
However, there seems to be rather limited consideration on how to approach this require-
ment or its constituting elements that are elaborated in General Comment 14 under Article
12 ICESCR.36 In contrast, scholars in medicine, health and health policy have attempted to

30 Erdinç Kurt and Others v Turkey,App no 50772/11 (ECtHR, 6 June 2017) [59].
31 For example, in the case of Erdinç Kurt and Others v Turkey the court emphasised investigation and motivation
of violation, but did not provide any tools to the assessment of lege artis, apart from indicating need for a proper
analysis to assess whether the care was such to meet the standard. See Erdinç Kurt and Others v Turkey, App no
50772/11 (ECtHR, 6 June 2017) [68]. In the case of Rõigas v Estonia, it indicated that ‘medical expert opinions
are very likely to carry a crucial weight in the courts’ assessment of highly complex issues of medical negligence.’
Rõigas v Estonia, App no 49045/13 (ECtHR, 12 September 2017) [115]. In the case of Fernandes De Oliveira v
Portugal, the ECtHR emphasised the need to carry out concrete assessment in that regard. See Fernandes De
Oliveira v Portugal,App no 78103/14 (ECtHR, 31 January 2019) [107].
32 Consolidated version of the Treaty on the Functioning of the European Union, OJ C 326, 26.10.2012, 47–390.
33 For example, C-173/09, Georgi Ivanov Elchinov v Natsionalna zdravnoosiguritelna kasa, ECLI:EU:C:2010:581.
34 Charter of Fundamental Rights of the European Union OJ C 326, 26.10.2012, 391–407.
35 Committee on the Rights of the Child, General Comment No. 15 (2013) on the right of the child to the enjoyment
of the highest attainable standard of health (art 24), 17 April 2013, CRC/C/GC/15, paras 113 and 116. CESCR,
General Comment No. 14:The Right to the Highest Attainable Standard of Health (Art 12 of the Covenant), 11 August
2000, E/C.12/2000/4, para 12.
36 For example, Brigit Toebes,‘Towards an Improved Understanding of the International Human Right to Health’
(1999) 21 Human Rights Quarterly 661, 667. See also, Aart Hendriks and Brigit Toebes, ‘Towards a Universal

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 Santa Slokenberga

clarify the issue,37 putting forward definitions and assessable components.38 Although it could
be perceived as a deficiency in legal scholarship, one must acknowledge that defining quality
of medical care is not easily done.39 It is a concept that is approached differently depending on
the perspectives that it is intended to capture and interests that it is intended to further.40 From
a legal perspective, it could be argued to be a concept that touches upon multiple aspects of
medical care that are subject to legal requirements, and both these aspects and the legal require-
ments evolve. Likewise, it is a concept that calls for taking account of multiple perspectives, key
being those at the core of medical care: the healthcare provider (person and institution) and the
patient.
General Comment 14 states:

As well as being culturally acceptable, health facilities, goods and services must also be
scientifically and medically appropriate and of good quality. This requires, inter alia,
skilled medical personnel, scientifically approved and unexpired drugs and hospital
equipment, safe and potable water, and adequate sanitation.

What is understood by the requirement that goods and services must be scientifically and medi-
cally appropriate and of good quality is not further elaborated, apart from indicating the need
to have scientifically approved, unexpired drugs and hospital equipment.41 General Comment
15 on the right of the child to the enjoyment of the highest attainable standard of health adopted under
the CRC also acknowledges the aforementioned two elements, and emphasises the need to
ensure their appropriateness for children and to carry out regular quality-of-care assessments.42
Regarding medical interventions, it specifies that the quality element includes a requirement
that ‘treatments, interventions and medicines are based on the best available evidence.’43 It also
requires that ‘medical personnel are skilled and provided with adequate training on maternal
and children’s health, and the principles and provisions of the Convention.’ Similar to General
Comment 14, it also includes a requirement regarding drugs and adds that drugs shall be scien-
tifically approved and shall not have expired. Furthermore, it states that the medical interven-
tions shall be child-specific (when necessary) and be monitored for adverse reactions. However,
no further guidance regarding the question of ‘best available evidence’ for treatments, interven-

Definition of the Right to Health’ (1998) 17 Medicine and Law 319.Tony Evans,‘A Human Right to Health?’
(2002) 23 Third World Quarterly. Steven D Jamar, ‘The International Human Right to Health’ (1994) 22
Southern University Law Review 1. Some depth to this question is given by Rui Nunes, Sofia B Nunes and
Guilhermina Rego,‘Health Care as a Universal Right’ (2017) 25 Zeitschrift Fur Gesundheitswissenschaften 1.
37 Grant E Steffen, ‘Quality Medical Care: A Definition’ (1988) 260 Jama 56. Avedis Donabedian, ‘The Quality of
Medical Care’ (1978) 200 Science (New York, N.Y.) 856. Philip Caper,‘Defining Quality in Medical Care’ (1988)
7 Health Affairs 49. SM Campbell, MO Roland, and SA Buetow, ‘Defining Quality of Care’ (2000) 51 Social
Science & Medicine 1611.
38 See, for example, Caper (n 37).
39 See an acknowledgement made early on by James Todd, senior deputy executive vice president of the American
Medical Association, in which he states that ‘quite honestly, the medical profession is groping to try to come up
with an understandable definition of quality.’ Federation of American Health Systems Review, May/June 1986,
p 22, quoted in Steffen (n 37).
40 See Caper (n 37).
41 CESCR, General Comment No 14:The Right to the Highest Attainable Standard of Health (Art 12 of the Covenant), 11
August 2000, E/C.12/2000/4, para 12.
42 Committee on the Rights of the Child, General Comment No 15 (2013) on the right of the child to the enjoyment of the
highest attainable standard of health (Art 24), 17 April 2013, CRC/C/GC/15, para 116.
43 Committee on the Rights of the Child, General Comment No. 15 (n 42) para 116.

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tions, and medicines is provided. In terms of the exact standards that are followed, these are for
the national legal orders to decide with due regard to their external commitments in the field.
In the case of Sweden, those commitments include membership in the EU and the CoE, and
accession to specific CoE treaties addressing the question of quality of care.

Quality as part of social rights, biology, and medicine requirements within the CoE

Within the CoE, two sets of legal instruments are of relevance for considering the standard of
care: first, treaties addressing social rights as well as the area of biology and medicine; second, soft
law tools, such as recommendations and resolutions.
Under Article 11.1 of the (revised) European Social Charter,44 with a view to ensuring
the effective exercise of the right to protection of health, states have a duty to remove as far
as possible causes of ill-health. It has been argued that it places on states positive and negative
obligations to further health. The European Committee of Social Rights has emphasised that
it includes ensuring the best possible state of health for the population ‘in line with the avail-
able knowledge.’45 Elsewhere, it has emphasised the necessity for ‘appropriate’ care.46 However,
thus far it does not seem that the European Committee of Social Rights would have provided
more precise guidance on its view on assessing the body of existing knowledge or determining
appropriateness in terms of standard of care.
Arguably, one of the most explicit treaty requirements for the standard of care is Article 3 of
the Biomedicine Convention, which mandates that care shall be of appropriate quality, along
with Article 4, which requires that it is carried out in such a way that it is in line with relevant
professional obligations and standards.47 However, unlike many other members of the Council of
Europe, Sweden has only signed the Biomedicine Convention and not ratified it. Consequently,
the importance of these provisions for Sweden is limited to not defeating the object and pur-
pose of the convention as required under Article 18 of the Vienna Convention on the Law of
the Treaties.48 Substantially, however, these provisions rely on the field of medicine as informed
by the state of the art and relevant professional obligations and standards to decide on the treat-
ment that shall be offered to a patient.
Several Committee of Ministers recommendations have elaborated on the requirement of
appropriate quality or requirements relevant for the quality of health care. For example, by 1997
it had already been emphasised that ‘health care should be improved by applying methods of

44 European Social Charter (revised), ETS No 163.

45 European Committee of Social Rights, Conclusions XV-2 (2001), Denmark.
46 European Committee of Social Rights, International Planned Parenthood Federation – European Network (IPPF EN)
v Italy, Complaint No 87/2012, Decision on the merits of 10 September 2013, para 66.
47 See Explanatory Report to the Convention for the Protection of Human Rights and Dignity of the Human
Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine,
ETS 164, paras 24, 30, and 32.
48 However, it is uncertain to what extent Articles 3 and 4 fall within the remit of ‘object and purpose’ of the
Biomedicine Convention. On the one hand, one could take Article 1 of the Biomedicine Convention as a start-
ing point and argue for the protection of the dignity and identity of everyone, as well as the guarantee of integrity
and other rights and fundamental freedoms for everyone, without discrimination. On the other hand, one could
take the rights and obligations enshrined in those articles from which signatories may not contemplate deroga-
tions and argue that they reflect the nucleus of the convention.Those are specified in Article 26.2 of the conven-
tion and are as follows: Articles 11, 13, 14, 16, 17, 19, 20, and 21. It could be argued that limiting the core of the
convention to non-derogable rights is unsatisfactory from the perspective of the intention of the convention, and
therefore, the former approach shall be preferred. However, it is then unclear what the exact expectations are of a
signatory state and how much leeway it has in regulating medical care and setting standards therein.

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evidence-based medicine and utilising the results of technology assessment in decision making,
directing appropriate attention to laboratory quality assurance.’49 A recommendation in 2006
stated the need for standardisation as an essential element of managing patient safety.50 Also, a
recommendation in 2012 emphasised medical health care technology that has been scientifically
proven to be beneficial to be an example of good practice.51 Detailed requirements have been
adopted relating to particular interventions, for example, haemophilia therapies, that have the
ability to shape the standard of medical care.52

Quality of medical care and EU law

The EU is no different from other legal orders in acknowledging the importance of quality in
medical care.Already in 2001, in a preliminary ruling in the Smiths and Peerbooms case, the CJEU
emphasised such considerations as the existing scientific literature and studies, and authorised
opinions of specialists as relevant considerations for assessing whether a particular medical treat-
ment is sufficiently tried and tested.53 Constrained by the principle of conferral, in Article 4
of the Patients’ Rights Directive it defers considerably to national law to ensure cross-border
healthcare is provided. From Article 4.1.b it can be derived that standards and guidelines on
quality and safety rules fall within the national competences, whereas from Article 4.1.c that
safety standards can also be adopted by the EU.54 The directive sets out a health technology
assessment network (cooperation system) to support the work of member states,55 which could
be reshaped in the near future.56 However, further work with these standards at the national
level remains within the competence of the national legal orders. Building on the principles of
mutual trust and recognition, the EU has left a highly limited possibility for member states to
doubt the quality of medical care in another member state.57
The Patients’ Rights Directive is not the only legal act of the EU that is relevant for shaping
the practice of medical care. Specifically in regard to medicinal products, already for more than
a decade a specific framework for ‘ensur[ing] that medicines are regularly researched, developed
and authorised to meet the therapeutic needs of children’58 has been in place, albeit it has not led

49 Council of Europe: Committee of Ministers, Recommendation No R (97) 17 of the Committee of Ministers to Member
States on the Development and Implementation of Quality Improvement Systems (qis) in Health Care, 30 September 1997,
Appendix, II.9.
50 Council of Europe: Committee of Ministers, Recommendation Rec (2006)7 on Management of Patient Safety and
Prevention of Adverse Events in Health Care.
51 Council of Europe, Committee of Ministers, Recommendation CM/Rec (2012)8 of the Committee of Ministers to
Member States on the Implementation of Good Governance Principles in Health Systems, 12 September 2012, Attribute
No 8.4.
52 Council of Europe, Committee of Ministers, Resolution CM/Res (2017)43 on Principles Concerning Haemophilia
Therapies (replacing Resolution CM/Res (2015)3) (Adopted by the Committee of Ministers on 13 December
2017).
53 C-157/99, B.S.M. Geraets-Smits v Stichting Ziekenfonds VGZ and H.T.M. Peerbooms v Stichting CZ Groep
Zorgverzekeringen, ECLI:EU:C:2001:404, [97]–[98].
54 Directive 2011/24/EU of the European Parliament and of the Council of 9 March 2011 on the application of
patients’ rights in cross-border healthcare, OJ L 88, 4.4.2011, 45–65.
55 ibid Art 15.
56 See Proposal for a Regulation of the European Parliament and of the Council on health technology assessment
and amending Directive 2011/24/EU, COM (2018) 51 final 2018/0018 (COD).
57 Directive 2011/24/EU (n 54),Art 8.2.
58 Marjolein Weda, Joëlle Hoebert, Marcia Vervloet, Carolina Moltó Puigmarti, Nikky Damen, Sascha Marchange,
Joris Langedijk, John Lisman, Liset van Dijk for the European Commission, Study on Off-Label Use of Medicinal
Products in the European Union, EU 2019, p 32.

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to the elimination of off-label use of drugs.59 Although not necessarily perfect, it has resulted in
the delivery of increased medicines. However, to date a comparable strategy for medical devices
and in vitro medical devices has not been implemented. For these three classes of products of
importance to medical care (medical devices, in vitro diagnostic medical devices, and medicinal
products) standards are set forth for their placing on the market or putting into service, and
transparency is furthered through the provision of information regarding intended use (e.g.
labelling).60 Therefore, although the EU prescribes product requirements, it does not set forth
detailed requirements relating to their use.61 Furthermore, although professional qualifications
are of central importance to quality of medical care, further quality conditions or mechanisms
are not set down therein.62

Insights from the medical profession

What standard?
Medical decision-making is complex and a brief insight into the field cannot adequately por-
tray the daily challenges healthcare professionals face in practising medicine or do justice to
the immense amount of scholarship and implemented legal and policy solutions in the field.
However, a brief insight can give a sense of its sophistication, traditions, and internal transitions,
as well as the controversies in the field, and illustrate the elusive nature of the standard of medical
care that the international and EU law refers to and that national law needs to capture, both as
a right-to-health obligation and as an integrity-protecting measure.
The current dominant standard in medical care is evidence-based medicine (EBM). Its ori-
gins date back to the second half of the last century, when a paradigm shift occurred and the
focus switched from the ‘art of medicine’ to data derived from clinical research and their incor-
poration in the practice of medicine;63 however, the term EBM was coined only in 1992.64
At the core of the art of medicine was a belief that ‘each physician always thought the right
thoughts and did the right things,’65 which rested on the assumption that each ‘physician would
synthesize all of the important information about the patient, relevant research, and experiences

59 ibid 38–83.
60 See Directive 2001/83/EC of the European Parliament and of the Council of 6 November 2001 on the
Community code relating to medicinal products for human use OJ L 311, 28.11.2001, 67–128; Regulation
(EU) 2017/745 of the European Parliament and of the Council of 5 April 2017 on medical devices, amend-
ing Directive 2001/83/EC, Regulation (EC) No 178/2002 and Regulation (EC) No 1223/2009 and repeal-
ing Council Directives 90/385/EEC and 93/42/EEC (Text with EEA relevance) OJ L 117, 5.5.2017, 1–175.
Regulation (EU) 2017/746 of the European Parliament and of the Council of 5 April 2017 on in vitro diagnostic
medical devices and repealing Directive 98/79/EC and Commission Decision 2010/227/EU (Text with EEA
relevance) OJ L 117, 5.5.2017, 176–332.
61 As acknowledged by the CJEU, the EU rules on pharmaceutical products do not prohibit off-label prescription.
Regulating the use of medicinal products is a competence of the national legal orders. C-179/16, F. Hoffmann-La
Roche and Others, EU:C:2018:25 [59].
62 See Directive 2005/36/EC of the European Parliament and of the Council of 7 September 2005 on the recogni-
tion of professional qualifications, OJ L 255, 30.9.2005, 22–142.
63 Ronald L Koretz,‘Assessing the Evidence in Evidence-Based Medicine’ (2019) 34 Nutrition in Clinical Practice
60.
64 Evidence-Based Medicine Working Group, ‘Evidence-Based Medicine. A New Approach to Teaching the
Practice of Medicine’ (1992) 268 JAMA 2420. (Gordon Guyatt and others, ‘Evidence-Based Medicine: A New
Approach to Teaching the Practice of Medicine’ (1992) 268 JAMA 2420. Gordon H Guyatt, ‘Evidence-Based
Medicine’ (1991) 114 ACP Journal Club A16.
65 David M Eddy,‘Evidence-Based Medicine:A Unified Approach’ (2005) 24 Health Affairs 9, 9–10.

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with previous patients to determine the best course of action.’66 However, this approach proved
to contain major flaws, perhaps most obviously exemplified by two experts arriving at differ-
ent conclusions in their clinical judgements.67 Today, EBM is regarded as the gold standard for
decision-making in medical practice and health policy.68 As pointed out by Garland, it coexists
with other approaches,69 for example, science-based medicine, which, according to its propo-
nents, seeks to tackle the shortcomings of EBM.70 However, it is questionable to what extent it
is an approach on its own.
EBM ‘is the conscientious, explicit, and judicious use of current best evidence in making
decisions about the care of individual patients.’71 The goal of EBM is to integrate ‘individual
clinical expertise with the best available external clinical evidence from systematic research.’72
To achieve this goal, several steps need to be taken. First, assessment of clinical efficacy of an
intervention needs to be made, which is achieved through a systematic and rigorous assessment
and categorisation of the available evidence. EBM requires that the available evidence is thor-
oughly scrutinised in terms of design, methodology, and validity of conclusions, and then graded
into a level of evidence. Second, specific guidelines, standards, options, and recommendations
may be developed and distributed. Finally, the findings are integrated with clinical expertise to
make treatment decisions. Whether or not specific guidelines, standards, options, and recom-
mendations are developed and distributed depends on many considerations, including estab-
lished frameworks governing the practice of medicine in a particular country. In either case, it
could be said that step two can be part of health policy measures or they can be approached in
terms of steps an individual healthcare provider is taking in order to identify the best medical
care for the patient.
Despite its prominent status, EBM is not without its shortcomings. Critics of EBM make a
number of claims directed at the very core of EBM – evidence – including on the content of the
evidence generally,73 the quality of evidence generated through randomised clinical trials, and
the challenges regarding interpreting the results, selectivity in reporting, and quality of the stud-
ies.74 As shown from scholarly discussions, EBM scholars are not blind to this reality. Ioannidis in
his reflection on EBM and his professional and personal experiences summarised the situation
thus:‘As EBM became more influential, it was also hijacked to serve agendas different from what

66 ibid.
67 ibid. Beginning in the early 1970s, however, two major flaws began to appear in this fundamental assumption.
68 Ana Fernandez and others,‘Evidence-Based Medicine: Is It a Bridge Too Far?’ (2015) 13 Health Research Policy
and Systems 66.
69 Garland, On Science, Law, and Medicine:The Case of Gender-‘Normalizing’ Interventions on Children Who Are Diagnosed
as Different in Sex Development (n 10) 206–14.
70 Central claims are particularly regarding the scope of ‘science’ EBM relies upon (reliance on clinical science as
opposed to all available scientific evidence, including from other disciplines), not how it tackles prior probabil-
ity.‘About SBM’ https://sciencebasedmedicine.org/about-science-based-medicine/ accessed 5 July 2020.‘Prior
Probability: The Dirty Little Secret of “Evidence-Based Alternative Medicine”’ https://sciencebasedmedicine
.org/prior-probability-the-dirty-little-secret-of-evidence-based-alternative-medicine-2/ accessed 5 July 2020.
71 David L Sackett,‘Evidence-Based Medicine’ (1997) 21 Seminars in Perinatology 3.
72 ibid.
73 Alvan R Feinstein and Ralph I Horwitz,‘Problems in the “Evidence” of “Evidence-Based Medicine”’ (1997) 103
The American Journal of Medicine 529.
74 Susanna Every-Palmer and Jeremy Howick,‘How Evidence-Based Medicine Is Failing Due to Biased Trials and
Selective Publication’ (2014) 20 Journal of Evaluation in Clinical Practice 908. Michel Accad and Darrel Francis,
‘Does Evidence Based Medicine Adversely Affect Clinical Judgment?’ (2018) 362 BMJ: British Medical Journal
(Online).

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it originally aimed for.’75 This points to the industry and funders, as well as market pressure and
individual clinicians (including those yielding to market temptations and pressures, and those
adhering to eminence-based medicine principles) as being among those who have had a role to
play in exploiting the vulnerability of the mechanism.76 As Ioannidis himself elsewhere observed,
there is increasing concern that in modern research false findings may be the majority or even
the vast majority of published research claims.77 Thus, although it can be said to be the dominant
current standard in the field of medical decision-making, which allows identifying the best way
to treat a particular patient and determine medical cause, when practising EBM one should be
mindful of its vulnerabilities.

Grading evidence
A central component in EBM is the assessment of evidence for a particular clinical application.78
Since the first proposal in the 1970s about how evidence can be categorised, other approaches
have emerged.79 Although there are differences in these models and they have evolved over time
into better versions of themselves, it is generally agreed that randomised clinical trials and sys-
tematic reviews of randomised clinical trials have the most credibility, whereas expert opinion
has the least.80
A system that was put forward in 2004 called Grading of Recommendations Assessment,
Development and Evaluation (GRADE), and which has since been refined,81 has been widely
accepted (including in a Swedish context)82 for the purpose of assessing not only the quality
of evidence but also the strength of recommendations.83 This approach involves five key steps:

• First, to localise the source in the ranking of evidence between ‘high’ for randomised con-
trolled trials and ‘low’ for observational studies.

75 John PA Ioannidis,‘Evidence-Based Medicine Has Been Hijacked:A Report to David Sackett’ (2016) 73 Journal
of Clinical Epidemiology 82.
76 ibid.
77 John PA Ioannidis,‘Why Most Published Research Findings Are False’ (2005) 2 PLoS Medicine e124.
78 At its core,‘EBM advocates want patients, practitioners, health care managers and policy makers to pay attention
to the best findings from health care research that meet the dual requirements of being both scientifically valid
and ready for clinical application.’ R Brian Haynes,‘What Kind of Evidence Is It That Evidence-Based Medicine
Advocates Want Health Care Providers and Consumers to Pay Attention To?’ (2002) 2 BMC Health Services
Research 3.
79 Patricia B Burns, Rod J Rohrich, and Kevin C Chung, ‘The Levels of Evidence and Their Role in Evidence-
Based Medicine’ (2011) 128 Plastic and Reconstructive Surgery 305.
80 ibid.
81 Peter C Wyer, ‘From MARS to MAGIC: The Remarkable Journey through Time and Space of the Grading
of Recommendations Assessment, Development and Evaluation Initiative’ (2018) 24 Journal of Evaluation in
Clinical Practice 1191.
82 See Brian P Kavanagh, ‘The GRADE System for Rating Clinical Guidelines’ (2009) 6 PLoS Medicine (9)
e1000094. In the Swedish context, see the National Board of Health and Welfare and SBU, see Socialstyrelsen,
‘Nationella Riktlinjer. Metodbeskrivning’ www.socialstyrelsen.se/globalassets/sharepoint-dokument/doku
ment-webb/nationella-riktlinjer/nationella-riktlinjer-metodbeskrivning.pdf. However, EBM importance in
day-to-day practice and in assessment with the compliance with the Swedish standards on science and proven
experience is unexplored. Prima facie, the Medical Responsibility Board (Hälso- och sjukvårdens ansvarsnämnd),
accounts for it implicitly in such cases as considering whether guidelines of the National Board of Health and
Welfare have been followed.
83 Gordon H Guyatt and others,‘GRADE: An Emerging Consensus on Rating Quality of Evidence and Strength
of Recommendations’ (2008) 336 BMJ 924. For an insight into acceptance, see Kavanagh (n 82).

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• Second, to ‘downgrade’ or ‘upgrade’ the initial ranking through analysing the facts that
could affect the quality of the studies, for example, if they suffer from bias.
• Third, to assign a final grade for the quality of evidence as ‘high,’ ‘moderate,’ ‘low,’ or ‘very
low’ for all the critically important outcomes.
• Fourth, to consider other factors that influence the strength of a recommendation for a
course of action.
• Finally, to make a recommendation within the binary scale of a strong or weak recom-
mendation.84

Just as EBM has faced criticism, so too have evidence-grading techniques been subjected to
scrutiny.85 However, they are an integral part of the development of scholarly thought and can
help to improve the responsiveness of the mechanism to the challenges that time, decay, and
evolving practices bring.A recent criticism that GRADE has faced is that it does ‘not expressly
recognize the high risk of bias when the producers of evidence have an invested interest in
the result.’86 Others have pointed to disagreements in assigning a final grade for the quality of
evidence as ‘high,’‘moderate,’‘low,’ or ‘very low’ for all the critically important outcomes, which
then risks affecting the reliability of conclusions.87 Yet another reproval is that GRADE is not fit
for assessing risk and causality, establishing risk thresholds, or assessing animal studies, and there
are challenges in accommodating qualitative data.88

Integrating evidence into medical care

In clinical decision-making, assessment of evidence is only one step to arrive at a clinical deci-
sion. EBM has been presented as consisting of five steps: the first one relates to converting infor-
mation that is needed into answerable questions; the second to finding the evidence with which
to answer the questions; the third to critically appraising it; the fourth to applying the results
of the appraisal into the clinical practice; and the final one to evaluating the performance.89 In
the five-step EBM model described by Akobeng, the patient perspective is integrated in step
4, within which a recommendation is given on the evidence that can be applied to the patient.
The patient’s own values and circumstances are of importance in this, as well as factors that
shape what care can be delivered in a particular case, such as costs and availability of a particular
treatment option.
One should also be mindful of the link between different steps, in particular, steps 3 and 4.
As illustrated by Jones and Sagar,‘when one treatment is shown to be better than another on a
population basis this does not mean that it is the best treatment for the patient.’They draw on
Charlton’s earlier work90 and argue that ‘only when we cannot reliably predict which patient

84 Gabrielle Goldet and Jeremy Howick,‘Understanding GRADE:An Introduction’ (2013) 6 Journal of Evidence-
Based Medicine 50.
85 On critique, see Wyer (n 81).
86 Every-Palmer and Howick (n 74).
87 Susan L Norris and Lisa Bero, ‘GRADE Methods for Guideline Development: Time to Evolve?’ (2016) 165
Annals of Internal Medicine 810.
88 ibid.
89 Anthony K Akobeng,‘Principles of Evidence Based Medicine’ (2005) 90 Archives of Disease in Childhood 837.
90 See Bruce G Charlton, ‘Mega-Trials: Methodological Issues and Clinical Implications’ (1995) 29 Journal of the
Royal College of Physicians of London 96.

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 Paediatric care decision-making

will benefit from each treatment option should we take the general conclusion for the popula-
tion and apply it to the individual patient.’91
EBM as a mechanism allows finding answers to those questions that are open to its tech-
niques.92 However, it does not provide answers to the question of how to manage a patient’s
medical needs when there is no suitable evidence to address the challenge.93 Examples of this are
rare diseases or where there are ethical concerns which make it difficult to carry out the neces-
sary research.94 Paediatrics is one such area.
Diringer has argued that for some EBM scholars absence of proof is proof of absence, namely,
‘if a therapy has not been proven to improve clinical outcome in a randomized controlled trial, it
should not be used.’As he suggests,‘this approach is especially problematic in situations in which
there are almost no quality data and can lead to inaction and therapeutic nihilism.’ He urges
his readers to look behind the reasons for the lack of randomised controlled trials (including
ethical) and acknowledge the complex reality in clinics, particularly intensive care units, which
require rapid decisions to be made without high-quality data. In delivering this conclusion, he
contrasts scientists with doctors, where the former ‘have the luxury of making decisions based
on high-quality data.’95 Although it is not explicitly mentioned in the paper, one could argue
that it implies both the time that is necessary to rigorously follow EBM steps and the time to
advance science in the field.
Thus, when considering complex medical realities, it could be argued that there will be situ-
ations that have better preconditions for practising EBM, and there will be situations when the
possibilities to practice EBM could sometimes be limited.These limitations could be attributed
to various considerations, e.g. lack of adequate evidence on best treatment options when several
medical conditions coexist or medical urgency that precludes the possibility of undertaking
thorough research and instead require acting on the knowledge and skills at the disposal of the
healthcare professional.The question of lack of adequate evidence is of particular importance to
the area of paediatric medical care and considerations under which research involving children
as a class or as specific paediatric population groups may be carried out. If EBM does not lead to
clear answers on the care given, then the question is whether there is anything that can be done
about the specific medical condition in the given case. This is precisely the area in which the
importance of national approaches to managing standards of care and responsibility of health-
care providers kicks in and there is a need for answers to emerge.

Insights from Sweden: the nature of care for children

Some remarks on the governance of the standard of care and decision-making
In Sweden, the question of the (medico-)legal standard of quality and paediatric care decision-
making triggers two overlapping and interacting sets of legal requirements. First, those regulat-
ing the standard of care. Second, those regulating the child’s integrity, and medical and parental

91 Glenn W Jones and Stephen M Sagar, ‘Evidence Based Medicine: No Guidance Is Provided for Situations for
Which Evidence Is Lacking’ (1995) 311 BMJ 258.
92 ibid.
93 ibid.
94 Michael N Diringer, ‘Evidence-Based Medicine: What Do You Do When There’s No Evidence?’ (2003) 31
Critical Care Medicine 659.
95 ibid.

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decision-making.At the nucleus of the former is the healthcare regulatory framework, whereas
at the nucleus of the latter are both healthcare and family law frameworks.
Constitutionally, Sweden is a dualist country.Therefore, despite that Sweden is a signatory of
several international human rights treaties that are relevant to the standard of care and paediatric
decision-making, their effect depends on several circumstances, arguably key being whether
a particular legal act is implemented in the Swedish law.96 However, one of the four Swedish
constitutions, the Instrument of Government, offers protection to a number of internationally
recognized rights that are at the core of the questions of interest.97 To manage the relationship
between the national law and international law, the national courts have operationalised a prin-
ciple of treaty-conforming interpretation, which requires interpreting Swedish law in so far as
possible in harmony with international law.98
The area of health and medical care is steered by several central laws that are adopted by
Parliament. Key acts of Parliament on matters relating to paediatric medical care and decision-
making are the Health and Medical Care Act,99 the Patient Safety Act,100 the Patient Act,101
and the Code on Parents and Children.102 In exploring the legislator’s intention and obtaining
insights into the dialogue that occurred with the stakeholders regarding the formation of par-
ticular provisions travaux preparatoires are of particular value.103 During the development of an
act, various public documents are generated that belong to the broader category of preparatory
works, including inquiry reports104 and bills of the government,105 which are considered in this
chapter. These bills belong to a later phase of development of a legal act and could be said to
closer reflect the intention of the legislature at the time the law was adopted.
Having introduced some essentials of the Swedish legal system, this section proceeds by
analysing the question of quality of health care.Thereafter, it analyses the protection of bodily
integrity and decision-making by taking account of the constitutional perspectives and health
and family laws. It then addresses their interplay.

On standards of paediatric care

Legal requirements for quality of care

From a constitutional perspective, the most relevant norms steering the standard of paediatric
care are the ones that provide protection to the protection of the right to health. However, other
norms could be also relevant, for example, the ones protecting integrity that are reviewed in the
next section.

96 On the complex relationship, see Lena Marcusson,‘Det Offentliga Uppdraget Och de Mänskliga Rättigheterna’
in Anna-Sara Lind and Elena Namli (eds), Mänskliga rättigheter i det offentliga Sverige (Studentlitteratur 2017)
33. Maria Grahn-Farley,‘Fördragskonform tolkning av MR-traktat’ [2018] Svensk Juristtidning 423.
97 In particular, Chapter 1 Article 2 and Chapter 2 of the Instrument of Government.
98 Bull Thomas and Fredrik Sterzel, Regeringsformen – en kommentar (4th edn, Studentlitteratur AB 2019) 89. On
treaty conforming interpretation, see Grahn-Farley (n 96).
99 Hälso- och sjukvårdslag, SFS 2017:30.
100 Patientsäkerhetslag, SFS 2010:659.
101 Patientlag, SFS 2014:821.
102 Föräldrabalk, SFS 1949:381.
103 See Åke Frändberg,‘Interpretation of Statutes – the Use and Weight of Travaux Préparatoires in Sweden’ [1999]
Anglo-Swedish Studies in Law 11, 212–15.
104 Statens offentliga utredningar, abbrevierad as SOU, as well as Departementsserie, abbreviated as Ds.
105 Proposition, abbreviated as Prop.

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In Chapter 1 Article 2 of the Instrument of Government, the right to health is enshrined

as a goal that public institutions should promote.106 Similarly, as in many other constitutional
legal orders, this provision could be said to echo the socio-economic nature of the right to the
highest attainable standard of health and is a non-enforceable right.107 Consequently, although
treaty-conforming interpretation allows paying due regard to Article 12 ICESCR and Article
24 CRC, Chapter 1 Article 2 of the Instrument of Government in itself does not offer protec-
tion to a minor patient in claiming access to qualitative medical care. Nonetheless, if interpreted
in conformity with international law, this provision allows the international deference to pro-
fessional standards to be brought down to the national level.The detailed content of this right,
however, remains to be elaborated by the acts of Parliament in the field.
The three key acts in Sweden that are of particular relevance for the standards of care and
were introduced earlier establish a somewhat circular mechanism in ensuring quality of medi-
cal care.To begin with, Chapter 5 section 1 of the Health and Medical Care Act requires that
healthcare activities be conducted in a way that ‘the requirements for good care are met.’108
Healthcare providers have a particular responsibility to plan, manage, and control the respective
care provider (institution) to ensure that this requirement is fulfilled.109 In the Patient Act, the
principle of good care is not set forth expressis verbis.110 Nonetheless, Chapter 1 sections 6 and 7
echo provisions of the Health and Medical Care Act and set forth the goal of healthcare by stat-
ing that it ‘is good health and care on equal terms for the entire population.’ Each ‘patient shall
receive competent and diligent healthcare that is of good quality and which is in accordance
with science and proven experience.’ As can be derived from the preparatory works, this provision
has strong links with the Patient Safety Act which sets forth science and proven experience as a
steering principle for professional performance of healthcare personnel,111 as well as the provi-
sion of the Health and Medical Care Act which sets forth the requirement of good care.112
What the principle of ‘good care’ entails and consequently its implications in paediatric care
is only generally elaborated in Chapter 5 section 1 of the Health and Medical Care Act, but it
suffices to assert that quality of medical care is one of its elements, along with a requirement
that the care is easily accessible and meets the patient’s need for security, continuity, and safety.
However, as elaborated in detail later, the nature of care that meets the criterion of science and
proven experience is surrounded by a degree of ambiguity and has fuelled considerable research
in the field.113 What is well established, however, is that some interventions are exempted from

106 Kungörelse om beslutad ny regeringsform, SFS 1974:152, Chapter 1 Article 2.

107 See Anna-Sara Lind,‘The Right to Health in Sweden’ in Aeyal Gross and Colleen M Flood (eds), The Right to
Health at the Public/Private Divide:A Global Comparative Study (Cambridge University Press 2014) 53.
However, as argued by Anna-Sara Lind, the requirement of social rights to be genuine and effective contrib-
utes to closing the gap of non-enforceability of these rights. Anna-Sara Lind,‘Sociala Rättigheter i Förändring:
En Konstitutionellrättslig Studie’ (PhD thesis, Juridiska institutionen 2009) 439.
108 Hälso- och sjukvårdslag (n 99).
109 ibid Chapter 3 section 1.
110 See Patientlag (n 101).
111 Prop 2016/17:43, En ny hälso- och sjukvårdslag.
112 See Prop 2013/14:106, s 112. In regard to the repealed Health and Medical Care Act section 2a, para 1, which
is now Chapter 5 section 1 of the Health and Medical Care Act.
113 Among recent scholarly contributions are Garland. See Jameson Garland, ‘Testing the Bounds of Lawful
Medicine in Sweden:Vetenskap Och Beprövad Erfarenhet as a Legally Enforceable Standard of Care’ [2019]
Nordisk socialrättslig tidskrift 79. Lena Wahlberg, ‘Rätten till Ersättning För Gränsöverskridande Våd Och
Kravet På Vetenskap Och Beprövad Erfarenhet’ [2018] Förvaltningsrättlig tidskrift 789. Lena Wahlberg and
Johannes Persson, ‘Importing Notions in Health Law: Science and Proven Experience’ (2017) 24 European

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this requirement, for example research114 and homeopathy (an alternative to treatment).115 At the
same time, it is also known that some grey areas regarding medical care, on the one hand, and
scientific research, on the other, exist, and therefore the question of the application of unproven
methods emerges.116 Some of the key points relevant to unpacking the notion, and thereby
identifying what level of health and medical care may (or shall, depending on circumstances) be
offered to children, are considered next.

Quality of medical care in terms of standards

The legal frameworks that are considered here are relatively modern, namely, the Patient Safety
Act adopted in 2010 and the Patient Act adopted in 2014. However, the requirement of sci-
ence and proven experience in Swedish medical law has been known since the 1890s117 and
has been part of health regulations since 1960.118 Moreover, it was an ethical standard adopted
by the Swedish Medical Association119 and is also known in other fields, such as education.120
Despite this considerable history and medico-legal nature, to date the content of this standard
is surrounded by a degree of ambiguity,121 which leads to uncertainty about the standard of care
that is offered to patients.
In the preparatory works for two relatively old and repealed laws, namely, the Act for the
Qualification to Practice Medicine and the Quackery Act, the principle of science and proven
experience is contrasted with medical or healing art.As acknowledged therein, it ‘has obviously
little coverage in the practitioner’s profession’ in our days ‘when this (medical) treatment is
determined by science and proven experience.’122 Since 1994, this obligation formally extends
to all healthcare workers,123 initially under the Act on the Duties of Health Care Personnel,124
which was annulled and then replaced by the Patient Safety Act.125 However, neither of the legal
acts that refer to this notion defines it. Furthermore, as insights from the preparatory works in
the following show, close to nothing was done to define it there either.126

Journal of Health Law 565. Lena Wahlberg and Nils-Eric Sahlin,‘Om Icke Vedertagna Behandlingsmetoder Och
Kravet På Vetenskap Och Beprövad Erfarenhet’ [2017] Förvaltningsrättslig tidskrift 45.
114 SOU 1989:60,Alternativmedicin, 59.
115 ibid 184.
116 Rynning (n 10) 134.
117 D M Pontin, Författningar m.m. angående medicinalväsendet i Sverige, omfattande år 1890 (Norstedt & Söner
1891) § 59, quoted in Wahlberg and Persson (n 113) 570.
118 See Kungl.Ma:t’s proposition nr.141 år 60, p 34. See The Act for the Qualification to Practice Medicine, SFS
1960:408 and the Quackery Act, SFS 1960:409.
119 It is not merely a legal requirement, but also an ethical one. Läkaren ska handla i enlighet med vetenskap och
beprövad erfarenhet. Läkarförbundets etiska regler, available https://slf.se/rad-och-stod/etik/lakarforbundets-e
tiska-regler/ accessed 13 July 2020.
120 See Skollag, SFS 2010:800, Chapter 1 section 5.
121 Indeed, it is nothing new that the concept is difficult to grasp and it is ambiguous. www.sbu.se/sv/publikation
er/vetenskap-och-praxis/beprovad-erfarenhet-behover-omprovas/
122 See Kungl.Ma:t’s proposition nr.141 år 60, p 34, www.riksdagen.se/sv/dokument-lagar/dokument/proposition
/kungl-majts-proposition-nr-hl-ar-1960_EL30141/html.
123 As argued by Rynning, in practice this principle has already applied to other healthcare professionals prior to
this enactment. See Rynning (n 10) 128.
124 Lag om åligganden för personal inom hälso- och sjukvården, SFS 1994:953 (repealed).
125 Wahlberg and Persson (n 113) 570.
126 An argument for the absence of legal content in this provision was put forward in a case before the
Medical Responsibility Board, but it had no impact on the outcome. See Medical Responsibility Board, deci-
sion of 2 September 2009 No HSAN 2008/4114:B4.

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 Paediatric care decision-making

Science and proven experience

In Sweden, there is no legal definition of science. However, from section 2 paragraph 2 of

the Ethical Review Act127 one can infer that there is a close link between scientific work and
research. In a bill of a different act, science is conceptualised as knowledge that has been obtained
systematically and methodologically within a specific area.The bill indicates that the decision of
what constitutes science in a particular field must be based on all available science.128 However,
this does not help to set the level of ‘science’ required under the science and proven experi-
ence standard. As scientific research in Sweden is regulated under a different framework, which
includes the Ethical Review Act, one could argue that (at least prima facie) the medical care
framework relates to the status quo of the science. This could be supported by the aforemen-
tioned argument that research is exempt from compliance with the requirements of science and
proven experience.129 However, at the same time, given the developments in the area of scientific
research, this does not necessarily lead to the conclusion that an intervention that is subjected to
research cannot meet the standard of ‘science.’
Generally, science can be approached in broad and narrow terms. The narrow approach to
science focuses on the respective field and specific questions addressed therein. Such an approach
could be said to relate to the GRADE approach to assessing medical evidence. Namely, through
an accepted methodology it is ascertained how the science stands on an issue. However, this
approach rests on the assumption that science is defined by the elements covered by the respec-
tive mechanism. In their work, both of the Swedish authorities, namely, the National Board of
Health and Welfare, and the Swedish Agency for Health Technology Assessment and Assessment
of Social Services, use GRADE. As explained by Wahlberg, the national guidelines, as well as
other forms of knowledge support in the field adopted by either of the authorities, can give
insightful information on the nature of care that could be said to fulfil the criterion of science
and proven experience.130 Such an approach, however, embraces not only the science limb of the
principle but also the proven experience limb.
A more general perspective of science allows integrating the previously discussed EBM criti-
cism and accommodating the core argument put forward by the science-based medicine group.
From the Swedish perspective, one could argue that other disciplines could even have an impact
on the field of medicine and challenge the validity of results. While this approach could offer
advantages as it enables other evidence to be taken into account (e.g. other scientific disciplines)
and medical scientific findings to be assessed in light of other findings, it carries with it uncer-
tainty about the types of disciplines and evidence, as well as how much evidence is needed in
order for the requirement to be met.
The assessment of ‘experience’ has been built into the GRADE system and seems to require
documentation of the experience that the GRADE system tools can take into account. In the
Swedish context, one of the fundamental questions related to the science and proven experience
standard is whether the requirement of ‘experience’ relates to the respective medical profes-
sional’s experience or to experience within the medical profession more generally. Likewise,
what is unclear is how much experience is enough in order for the ‘proven experience’ aspect

127 Lag om etikprövning av forskning som avser människor, SFS 2003:460.

128 Prop 2012/13:150, Patientrörlighet i EU – förslag till ny lagstiftning, 52.This approach can be compared with
that of UNESCO, which in its Recommendation on Science and Scientific Researchers recommendation
addresses science as a process as well as a fact or state. See para 1(a)(i).
129 See Wahlberg and Sahlin (n 113) 48.
130 See Wahlberg (n 113) 739.

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to be met, and how this experience should be assessed.131 While the requirement for individual
experience could be seen as setting a higher standard (that experience needs to be obtained
prior to an intervention), it would also create questions about how this experience could and
should be obtained and whether there are adequate mechanisms in place for this to happen, for
example, through the research avenue. Likewise, there is also a risk that individual experience as
a criterion in some contexts might be inappropriate from a patient perspective due, for example,
to risks of non-consensual scientific experimentation.
Under the Swedish standard of care, the notion of science coexists with the notion of expe-
rience through a conjunction, which literally means ‘and.’The way one sees this conjunction is
decisive in how science interplays with experience. Preparatory documents which can be used
as guidance on the originally intended content of this concept are not available, and the prepara-
tory works of the laws of 1960 do not elaborate on it in detail.The preparatory works of 1989
indicated that already by 1976 the National Board of Health and Welfare had provided guidance,
stating that the word implies ‘both’ and not ‘either or.’ It elaborates:

The requirement consists in the demand that the medical doctor, in the exercise of
his or her profession, is bound to take account of both science and proven experience.
The legal text thus implies an ‘and’ – not an ‘either … or.’At the time, for example, at
which a new method is introduced, proven experience of it is trivially lacking, and the
scientific evidence has to suffice for the decision to accept the method. … At other
times, long clinical experience might be the dominant evidence in favour of accept-
ing the medical treatment, whereas theoretical and/or experimental evidence for its
effectiveness might be lacking.132

Given the age of this statement and the significant advances in regard to EBM, Wahlberg and
Sahlin have argued that this explanation should be treated with caution.133 They have found the
support in the National Board’s referral response to a different national law in regard to which
the authority places primary emphasis on the science, leaving proven experience as a second-
ary criterion.134 However, at the same time the approach does not imply that science could be
separated from experience, and experience relates to the ‘practice’ and ‘skills’ of the healthcare
provider concerned rather than being an accepted practice in the field.
In scholarly discussions, more measured approaches than the one suggested by the National
Board of Health and Welfare have emerged. One is when only one of the criteria are met in a
case ‘either or but not in conflict between the two’ could suffice.135 Such an approach sets rather
clear but broad borders for the professional freedom of the medical profession.
While there is room for further analysis of the requirement of science and proven experience,
it suffices to note that while in some cases it can be rather easily established what meets this
standard and consequently what medical care a child can be subjected to, in other cases it will
rather be difficult to establish.This uncertainty has several far-reaching implications, including
on the question of liability of healthcare providers and the actual nature of the care offered to an

131 See Johannes Persson and Lena Wahlberg, ‘Vår erfarenhet av beprövad erfarenhet’ [2005] Läkartidningen
112:DR6A.
132 SOU 1989:60 (n 114) 59.
133 Wahlberg and Sahlin (n 113) 62–63.
134 ibid 63.
135 Johannes Persson, Sten Anttila and Nils-Eric Sahlin,‘Hur Förstå ’och’ i ’vetenskap Och Beprövad Erfarenhet’?’
[2018] Filosofisk tidskrift.

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individual patient for her medical needs.At the most extreme, if there is no common verifiable
understanding of what care meets the standard of science and proven experience, then care that
is offered to an individual could differ depending on who is making the decision. If this happens
the Swedish standard risks landing in the initial challenges the field of medicine faced when
medicine was considered to be art.This, however, could risk resulting in liability.

Operationalisation of this principle

The National Board of Health and Welfare has been tasked with ensuring in part that health
care is provided in accordance with science and proven experience.This should happen through
knowledge support and regulations.136 The Swedish Agency for Health Technology Assessment
and Assessment of Social Services has been tasked with evaluating the scientific support for
applied and new methods in health care.137 The latter produces checklists and assessments,
which are its key tools for meeting the objective,138 whereas the former issues recommendations
regarding the provision of medical care and adopts regulations that clarify the obligations set
forth in the laws, thus contributing to clarifying the standard.The same also applies to regula-
tions adopted by the Medical Products Agency.139 They could be said to shape what constitutes
science and proven experience in the matters these instruments cover or allow to assess.140
However, where these guidelines are lacking, medical decision-making regarding what care
should be offered to children again lands back on the principle of science and proven experi-
ence.
In the absence of greater certainty, more than two decades ago Rynning had already explored
the ambiguity over when exactly a new method can be regarded as being in line with the
requirement of science and proven experience, and how it relates to exceptional cases. In that
regard, she indicated that the room for manoeuvre for applying unestablished methods is con-
siderably constrained.141 Relatively recently Wahlberg and Sahlin have labelled these non-con-
ventional methods and have argued that in order for them to apply under the science and
proven experience criterion, inter alia, sufficient evidence of their safety and effectiveness should
exist.142 By doing so, they implicitly seem to argue against interventions that lack adequate sci-
entific foundations.
For over a decade already the application of new diagnoses or methods that have implica-
tions for human dignity or integrity are required to be assessed in terms of individual and social
or societal ethical aspects.143 In essence, this means an external review prior to implementation
in clinical practice. Although a broad interpretation could lead to a conclusion that almost any
method in healthcare has relevance for integrity and dignity and thus be subject to review, in
the preparatory works to this reform it is indicated that the concepts of ‘integrity’ and ‘dignity’

136 Förordning med instruktion för Socialstyrelsen, SFS 2015:284, section 4 para 1.
137 Förordning med instruktion för Statens beredning för medicinsk och social utvärdering, SFS 2007:1233, sec-
tion 1.
138 See SBU,‘Method’ www.sbu.se/en/method/ accessed 22 July 2020.
139 The Medical Products Agency (Läkemedelsverket), Förordning med instruktion för Läkemedelsverket, SFS
2020:57.
140 See SOU 1989:60 (n 114) p 59. See, for example, decision of the Health and Social Welfare Inspectorate of 3
September 2015, Dnr 8.2-29040/2013. See also Medical Responsibility Board, decision of 5 February 2020
No 24.1 -20457/2019.
141 Rynning (n 10) 128–34.
142 Wahlberg and Sahlin (n 113) 65.
143 Hälso- och sjukvårdslag (n 99), Chapter 5 section 3.

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shall be narrowly interpreted.The preparatory works also indicate that focus should be on the
methods that relate to existential questions about the beginning and end of life. Other meth-
ods could also be covered, but not, for example, elderly and home healthcare.144 It is clear that
this requirement is not intended to be treated as mandatory, and uncertainties about whether
a method should or should not be subjected to review could emerge. Moreover, it means that
methods that are not subject to this review can be introduced into healthcare. Finally, it will be
for each healthcare provider to decide on a particular intervention and whether it meets the
requirement of science and proven experience. However, whether the care is such that it meets
the standard will ultimately be decided by those entrusted with ensuring oversight of the field.145
This could have differing and far-reaching implications, which I shall consider in the conclud-
ing part of this chapter.

Child integrity and best interests

Protection of bodily integrity

Matters relating to a child’s rights and personal integrity rest on several constitutional provi-
sions. Firstly, an objective that is set forth in the Instrument of Government is to safeguard a
child’s rights,146 along with the objective to protect each individual’s right to privacy and family
life.147 Secondly, bodily integrity falls under the individual rights block of the constitution. In
accordance with Chapter 2 Article 6, paragraph 1 of the Instrument of Government, every-
one is ‘protected in their relations with the public institutions against any physical violation.’
Furthermore, paragraph 2 of the same provision safeguards ‘against significant invasions of their
personal privacy, if these occur without their consent and involve the surveillance or systematic
monitoring of the individual’s personal circumstances.’148 These protections can be limited if the
conditions set forth in Chapter 2 Article 20 of the Instrument of Government are fulfilled. In
particular, this means that a law, i.e. an act of Parliament, is necessary in order for a limitation to
be considered permissible.
As can be derived from the preparatory works to the Patient Act, Chapter 2 Article 6, para-
graph 1 of the Instrument of Government is of particular importance.149 It sets out that health-
care seeks to protect individuals from forced actions taken by public authorities. This covers
invasive and non-invasive medical interventions carried out within publicly organised health-
care.150 However, interventions that are not regarded as forced do not fall under this constitu-

144 Prop 2009/10:83, Etisk bedömning av nya metoder i vården, 26–27.

145 Rynning (n 10) 130.
146 Kungörelse om beslutad ny regeringsform, SFS 1974:152 Chapter 1 Article 2.
147 Kungörelse om beslutad ny regeringsform (n 146) Chapter 1 Article 2. See Johanna Schiratzki,‘Children’s Right
to Family Life and the Swedish Constitution’ in Trude Haugli and others (eds), Children’s Constitutional Rights in
the Nordic Countries (Brill Nijhoff 2019).
148 According to Litins’ka, paragraph 2 aims to strengthen these protections and safeguards against significant inter-
ventions without informed, voluntary, and explicit consent. Although this protection is conditioned on the
existence of surveillance or systematic monitoring of the individual’s personal circumstances.As argued by her, it
cannot be precluded that collection of data about a patient falls within the scope of application of this provision,
and in case of overlaps the one offering stronger protection shall prevail.Yana Litins’ka, ‘Assessing Capacity to
Decide on Medical Treatment: On Human Rights and the Use of Medical Knowledge in the Laws of England,
Russia and Sweden’ (Uppsala University 2018) 463.
149 Prop 2013/14:106 (n 112) 56.
150 See Prop 1973:90, Kungl. Maj:ts proposition med förslag till ny regeringsform och ny riksdagsordning m. m., p
242.The notion of public authorities shall be interpreted broadly and in accordance with Chapter 12 Article 4

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tional protection.151 For example, Rynning has emphasised that there should be at least reason to
assume that the person concerned would have opposed the intervention, namely, the presence
of a hypothetical opposition.152 Following the adoption of the Patient Act, Kindström-Dahlin
emphasised the importance of legally binding consent as an important criterion in determining
whether a constitutional provision has been violated.153 However, neither of the scholars seems
to imply that in all cases absence of valid consent amounts to a violation of the constitution. On
the contrary, for example, Rynning has argued that ‘it can hardly be argued that an interven-
tion has been imposed in situations where the individual has agreed to commitments because
of having not received complete information regarding, for example, the risks of the measure.’154
Given the evolution in integrity protection from a human rights perspective, one could ques-
tion whether a more expansive interpretation of this constitutional protection should be given.

Protection of integrity under the Patient Act: information and consent

The Swedish Patient Act does not expressis verbis entail a right to informed consent. Nonetheless, it
requires that the patient’s self-determination rights and integrity shall be respected. Furthermore,
it states that care may not be given unless the patient’s consent is received, except when there
is a legal basis to provide medical care without such consent.155 This also applies to children.
Regarding children, the law does not set a statutory consent age. Instead, it states that ‘when
the patient is a child, the child’s attitude to the current care or treatment should be clarified as
far as possible.The child’s attitude should be given importance in relation to his or her age and
maturity.’156 The preparatory works to the Patient Act indicate that it drew on other areas where
the age of 15 was seen as an age of empowerment to set the presumption threshold there. In
accordance with this threshold, for children under the age of 15 the presumption of incom-
petence applies, while after the age of 15 presumption of competence applies.157 However, in
either case, an individual assessment needs to be made.158 It can therefore be stated that in some
situations children will be regarded as competent to make decisions about their own healthcare.
Parental authority is addressed in the Parental Code. Generally, if a child is under the cus-
tody of one parent, that parent decides on the child’s personal matters, including on health.159
However, if the child is under the custody of both parents, they both decide.160 Exceptions apply

para 2 of the Instrument of Government covers even situations where delegation of powers is given to private
subjects. See review made by Litins’ka (n 148) 456.
151 Moa Kindström-Dahlin,‘Att Tvinga Ett Barn–Om Barns Rättigheter i Hälso-Och Sjukvården Och Behovet Av
En Tydligare Tvångsvårdslagstiftning’ (2016) 2 Förvaltningsrättslig tidskrift 245, 260.
152 Rynning (n 10) 107–108.
153 Kindström-Dahlin (n 151) 206.
154 Rynning (n 10) 107.
155 Patientlag (n 101) Chapter 4 section 2. On the challenges and tensions relating to the informed consent and
the rights discourse, see Jameson Garland,‘Informed Consent as a Right: Regulatory Challenges in the Swedish
Legal Framework’ (2018) 2 Förvaltningsrättslig tidskrift 233. On challenges in the application of the informed
consent, see Jameson Garland, ‘Informed Consent in Clinical Practice in Sweden: Challenges in Protecting
Patients’ Rights through Medical Science and Law’ (2019) 1 Förvaltningsrättslig tidskrift 49.
156 Patientlag (n 101) Chapter 4 section 3.
157 Prop 2013/14:106 (n 112) 65–67.
158 ibid at 66. See also Parliamentary Ombudsman decision of 23 November 2018 dnr. 3153–2016.
159 Föräldrabalk (n 102) Chapter 6 section 13 para 1.
160 ibid Chapter 6 sections 2 and 11. In the event that only one of the two parents agree to medical care, social
services may be involved to give decision on behalf of a child. See Föräldrabalk (n 102) Chapter 6 section
13a.

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when one of the parents is prevented from participating in decision-making because of, for
example, absence, unless the question relates to something that is of considerable importance
to the child’s future or the principle of best interests requires otherwise.161 Decisions that are
less intrusive into the child’s integrity can be made by one guardian, if the circumstances so
require.162 Likewise, if a child herself is deemed competent to decide, she may do so.163 Under
the Parental Code, the custodian must, as the child’s age and development increases, take greater
account of the child’s views and wishes. On this basis, the parents are empowered to assert the
child’s interests in a particular case with due regard to the views of the child.164
Before consent to medical care is obtained, relevant information that is adjusted to the age,
maturity, experience, language background, and other relevant elements must be provided to
a patient, which enables her to make an informed decision.165 Chapter 3 sections 1 and 2 of
the Patient Act set forth detailed information obligations of the care provider. For the purposes
of this analysis, it suffices to note only the most relevant ones: first, the methods available for
examination, care, and treatment;166 second, the expected course of care and treatment;167 and
third, information regarding significant risks of complications and side effects.168 Whether it is
the child who consents to medical care or the guardians, in addition to the child receiving infor-
mation, the guardians must also receive it unless exceptions relating to confidentiality apply.169
The key question is to what extent do the existing requirements on informed consent ensure
that the patient (and the decision-maker when the decision is not made by the patient) is
informed about the medical care being offered. While on the surface the requirement to dis-
close methods available for examination, care, and treatment could also enable the disclosing of
the limitations of these foundations from the science and proven experience perspective, the
preparatory works indicate that the starting point is the existence of methods that meet the
standard. As stated therein, the intended meaning of the phrase ‘expected course of care and
treatment’ is ‘a description of what the patient can normally expect in relation to the offered
care, and as a result of this care.’ Moreover, the phrase ‘information regarding significant risks of
complications and side effects’ ‘refers to risks that are not negligible.’170 As explained further in
the preparatory works,

the duty of information cannot be considered to cover all possible risks and complica-
tions that an intervention can lead to, for example, very rare complications. However,
if a side effect of a treatment is relatively uncommon but very serious, it may be con-
sidered a significant risk to the patient about which he or she should be informed.
The requirement for information in this section must be proportionate to the planned
treatment.’171

161 Föräldrabalk (n 102) Chapter 6 section 13 para 2. Exception to this applies when a child is under the custody
of both parents but one of them is permanently prevented from exercising the custody. See Föräldrabalk,
SFS1949:381, Chapter 6 section 8a.
162 Prop 1975/76:170, om ändring i föräldrarbalken, m.m., 178.
163 See Parliamentary Ombudsman decision of 23 November 2018 dnr. 3153–2016.
164 Prop1981/82:168, om vårdnad och umgänge m.m., p 24.
165 Patientlag (n 101) Chapter 3 Section 6 and Chapter 3 sections 1 and 2.
166 ibid Chapter 3 section 1 para 2.
167 ibid para 5.
168 ibid para 6.
169 ibid section 3.
170 Prop 2013/14:106 (n 112) 114.
171 ibid.

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 Paediatric care decision-making

In other words, the legal requirements offer guidance regarding the disclosure, but the judgement
on the relevant information to disclose remains with the particular care provider, with due regard
to the individual patient in focus.These requirements seem to be open to accommodate the dis-
closure of various limitations associated with medical care, including scientific uncertainty.

Interplay of the applicable requirements

Neither of the acts that expressis verbis requires taking into consideration the child’s best inter-
ests in medical care elaborates172 the meaning of the child’s best interests in health care. In the
preparatory works to the Patient Act, it is indicated that ‘the healthcare staff must take into
account science and proven experience and, depending on the child’s age and maturity, obtain
evidence from the guardians.’When necessary, information from other sources can be obtained.
Additionally, in line with Article 12 of the CRC, the child’s views must be considered. This
indicates that ‘the starting point of the child’s best interests is respect for the child’s full human
dignity and integrity.’173 Although the preparatory works to the Health and Medical Services Act
implicitly endorse this approach,174 as the earlier analysis on standard of care shows, the require-
ment of science and proven experience is conceptualised in terms of ‘must take into account.’
This hardly allows any room to deviate from this standard.Therefore, it could be said that it is
left to the care providers, in the first place, to decide what care can be offered to a child. It is
only then, from these alternatives, that there is a choice for the child’s parents (or if the child can
consent, the child) to decide on.
One could question how the fact that the best interests consideration is intertwined with the
requirement of science and proven experience could affect parental authority and responsibil-
ity for the child’s personal matters. In one scenario, shared decision-making could take place
thus enhancing the parental participation and role. In another scenario, as decision-making is
only vaguely addressed in the preparatory works, it could be a care provider that has reached
the decision about care and what is then left is to obtain a rather formal consent in order for it
to be carried out, unless an emergency requires a non-consensual intervention175 or there are
several alternatives to choose from that are compliant with science and proven experience and
best interests. However, even obtaining that rather formal consent might not be challenge free
and cases of parental disagreement176 or neglect of the duty of care177 could trigger the interven-

172 Chapter 5 section 6 of the Health and Medical Care Act and Chapter 1 section 8 of the Patient Act.
173 Prop 2013/14:106 (n 112) 63.
174 See Prop 2016/17:43 (n 111) 97–98.
175 Interventions carried out in the absence of consent are regulated under Chapter 4 section 4 of the Patient Act.
176 An illustrative case for addressing the parental disagreement in the case of use of medicine and the standard of
care is HFD 2015 ref 5. In the cases of parental disagreement for a Social Welfare Board to consent to care, it
is necessary that the intervention is from the child’s best interests perspective.That requires the Social Welfare
Board to obtain adequate information to identify the necessity for such care, including second opinion, and, if
needed to assess the guardian’s objections, a complementary assessment of an independent doctor. Whether a
guardian’s objections can be considered to have such weight that there is reason to obtain a supplementary medi-
cal assessment should also be decided with regard to how well substantiated the investigation that already exists
is judged to be.Additionally, according to the court, the nature of the intervention and continuity could have an
importance on the best interests analysis. Finally, should the Social Welfare Board approve the care, the decision
shall meet the requirements prescribed by the principle of legal certainty in a particular case. HFD 2015 ref 5.
177 Pernilla Leviner, ‘Who Has the Final Word? On Trust and Legal Uncertainty within the Swedish Healthcare
System’ in Imogen Gools, Cressida Auckland, and Jonathan Herring (eds), Medical Decision-Making on Behalf of
Young Children.A Comparative Perspective (Hart 2020), 155–66.

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tion of the Social Welfare Board to ascertain the best interests and make a decision, should that
be needed.
As was previously established, bodily integrity is protected under the Swedish constitution
and requires a legal basis for an intervention. One such basis is the research framework, another
is the healthcare framework, although admittedly there is considerable interplay between the
two, and there are interventions that relate to neither of them.The healthcare framework does
not permit substandard care, but at the same time it does not provide tools to establish the type
or level of care that meets the standard. This uncertainty has far-reaching implications. First,
the question arises about what, if any, is the standard that society and individual patients can
rely on when seeking healthcare. Second, just how ‘established’ should novel interventions be
under the requirement of science and proven experience to be able to offer them to a child.
Further inquiries into the assessments of healthcare quality could shed some light on this matter.
However, already here it can be noted that some resistance has emerged about accepting rela-
tively recent interventions that are intended for a condition that is not accompanied by a code
in the Swedish disease classification.178
In addition to the fact that there is uncertainty about the types of interventions children may
be subjected to, there is related uncertainty regarding what, if any, of these interventions lead to
risks of liability for the care provider associated with substandard care. A broad interpretation
of the science and proven experience concept could risk creating considerable room for new
interventions, and require considering when care is medical care and when it can be considered
an impermissible scientific experimentation. A narrow interpretation could risk setting a very
high standard for an intervention to enter into medical practice and therefore potentially create
an obstacle to innovative care.

Tying up the loose ends: standard of care and decision-

making perspectives in paediatric care
There is a considerable layer of international human rights law, EU law, and national Swedish
law that requires medical care generally and paediatric care specifically to be of appropriate
quality. This requirement is of central importance in Sweden in regulating what care can be
offered to a paediatric patient and what care the patient or her parents can consent to. However,
there is ambiguity about what exactly quality is, what care falls within the standard of science
and proven experience, and how to verify it.As was previously discussed, in some cases medical
decision-making will be straightforward as there is sufficient data and adequate preconditions to
operationalise them. However, in other cases, it can be problematic as adequate data are lacking
and it is difficult to carry out the necessary research.This ambiguity and uncertainty casts doubt
over the protection of integrity that human rights and Swedish constitutional law grants to a
child in need of medical care.
Both international human rights standards and Swedish national law defer to the medical
profession in defining what quality of medical care is.The medical profession, at least from the
EBM perspective, offers a functional approach in assessing evidence and transposing it into clini-
cal practice, but at the same time is aware of its shortcomings – for example, regarding existence
of evidence, quality of evidence, and resources that are necessary for assessing the evidence and

178 In one case, it was provided to a child by a doctor without paediatric speciality. It is unclear what bearing this
fact had on the decision of the board.The Medical Responsibility Board (Hälso- och sjukvårdens ansvarsnämnd),
Förordning med instruktion för Hälso- och sjukvårdens ansvarsnämnd, SFS 2011:582, para 1.

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transposing it to medical decision-making. In Sweden, quality is ensured through the notion

of science and proven experience: a notion that transplants medical knowledge in the legal
discipline and as such brings along challenges,179 as well as a notion that fails to provide tools to
verify when an intervention that is not yet well established, either generally or for a particular
patient group specifically, may be offered to patients in clinical care. Challenges associated with
this uncertainty could, to some degree, be overcome if relevant mechanisms were put in place
to control the entry of methods into clinical care. However, in Sweden, this control is an excep-
tion that applies to a narrow group of interventions rather than a rule for all new interventions.
This can be contrasted with approaches other countries have taken in requiring a method to
be registered prior to it being implemented in practice.180 In the absence of such a control, the
question emerges about the type of legal tools needed to ensure quality of care.
Uncertainty about the standard of care and challenges to setting boundaries allows ques-
tioning how difficult it will be to anticipate when a medical professional is deviating from the
standard.While the advantages of granting such considerable leeway to the medical profession
are clear, challenges could emerge from the perspective of patient integrity protection, more
specifically, how the requirement of informed consent can be met. In the Swedish context, the
requirement of ‘information’ prior to consent being acquired requires disclosure of risks that are
not negligible.This spills over into the question of what interventions children can be subjected
to and how this uncertainty affects the assessment of the child’s best interests. Singer has rightly
claimed that medical care that does not meet the standard of science and proven experience can
hardly be seen as compatible with the principle of the child’s best interests.181 However, this lack
of clarity risks rendering cumbersome identification of situations when these violations occur.
One could argue that effective implementation of the principle of best interests would require
that the standard of care was clarified.
From the human rights perspective, this situation allows questioning whether the science
and proven experience requirement and the difficulty in establishing the content of this notion
meet the requirements of the existence of ‘law’ that are relevant for both integrity protec-
tion provisions182 and the prohibition of a punishment without law under Article 7 ECHR.
Moreover, it is unclear whether it offers adequate foreseeability of the standard and risks for the
parties involved. It is well established that ‘the need to avoid excessive rigidity and to keep pace
with changing circumstances means that many laws are inevitably couched in terms which, to
a greater or lesser extent, are vague.’183 It is precisely this approach that has been coined as the
vessel approach in the Swedish law-making technique.184 Previously, the ECtHR has appeared
to be tolerant of the existence of grey areas that can be attributed to legislative technique.185
However, one should also be mindful of the risks associated with the use of overly vague con-
cepts and criteria,186 and the need for adequate mechanisms to be in place for ensuring patient

179 See Wahlberg and Persson (n 113).

180 For example, Latvia. See section 91 of the Medical Treatment Law, Latvijas Vēstnesis, 167/168, 01.07.1997.
However, at the same time it is an open question whether non-registered methods could be used in medical
care.
181 Anna Singer, Barnets Bästa: Om Barns Rättsliga Ställning i Familj Och Samhälle (Norstedts Juridik AB 2019) 380.
182 Garland (n 113) 89.
183 Kokkinakis v Greece,App no 14307/88 (ECtHR, 25 May 1993) [40].
184 Jane Reichel,‘European Legal Method from a Swedish Perspective: Rights, Compensation and the Role of the
Courts’ in Ulla Neergaard and Ruth Nielsen (eds), Towards a European Legal Method: Synthesis or Fragmentation?
(DJØF 2011) 248–51.
185 Cantoni v France,App no 17862/91 (ECtHR 15 Nov 1996) [32].
186 Liivik v Estonia,App no 12157/05 (ECtHR, 25 June 2009) [96]–[104].

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protections.187 One can question whether persistent disregard of uncertainty at the national level
is excusable under the ECHR standard which tolerates some ambiguity, regardless of whether
the situation is assessed from the integrity, liberty, or punishment point of view, or whether the
mechanism could risk collapsing should stronger human rights voices emerge.A deeper inquiry
from the human rights perspective is necessary to test the viability of this ambiguous standard.
In either case, for a matter to be tried at the ECtHR not only should the national remedies fail
to deliver justice in the cases of violation but the case should also pass the threshold of ‘mere’
negligence set by the ECtHR in the malpractice cases.
The principle of a child’s best interests requires that they are considered in all matters relat-
ing to children. In the Swedish context, the care providers have been placed in the position of
offering care that is in the best interests of children, whilst taking into account a number of per-
spectives. Swedish healthcare can therefore be argued to have made the transition from parental
decision-making to medical decision-making, where the care providers are required to assess all
relevant circumstances in order to arrive at a medical decision that is in the child’s best interests.
While this approach, at least on the surface, means that everyone acts in the child’s best inter-
ests, it also means that parental authority has to some degree been transformed into the binary
response of either ‘accepting’ or ‘refusing’ care that has been offered, or where several alternatives
exist, choosing from these, whereby the latter is subject to a potential public intervention. In
the Swedish context this situation allows questioning whether parental consent is nothing more
than a formality of keeping the parents informed and maintaining a false feeling of control over
their children as part of their duty to care. In this complex environment, paediatrics is an area
that could be receptive to shared decision-making practices. However, whether adequate pre-
conditions are in place for it to happen and whether and to what extent it is practised is another
question that remains to be explored elsewhere.
In either case, in Sweden, the healthcare regulatory standard makes no room for the provision
of medical care that does not meet the standard of science and proven experience. However, at
the same time, if it is difficult to establish what the standard is, one can question how the stand-
ard interplays with a scientific research regulatory framework and the internationally recognised
prohibition of non-consensual scientific experimentation. Likewise, it is unclear how to classify
interventions that do not meet the standard and whether there is an adequate mechanism in
place that allows the standard to be expanded in both emergency and non-emergency settings.
From a human rights perspective, inquiries are needed into the interplay between science and
clinical care expressed through the right to benefit from scientific progress and its applications,
prohibition of illegal and unethical scientific experimentation, and the right to health and integ-
rity, as well as its implications for the area of family law.

Acknowledgements
I would like to thank LL.D.Yana Litins’ka for insightful comments on an earlier draft of the
manuscript and Susan Cleary for the proofreading.
This contribution has been possible with the generous support of the Swedish Research
Council (Vetenskapsrådet) for the project ‘Beslutsfattande för barn vid medicinsk behandling med
ovissa resultat,’ project-id: 2017-02992.

187 See discussion in the section titled ‘Quality matters, but what is quality?’

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 9
THE RIGHT TO HEALTH
IN HONG KONG
Incorporation, implementation, and balancing

Edward Lui

Introduction
In 2000, the United Nations (UN) Committee on Economic, Social and Cultural Rights
adopted its General Comment No 14 on the right to health. It began by saying that ‘health is
a fundamental human right indispensable for the exercise of other human rights. Every human
being is entitled to the enjoyment of the highest attainable standard of health conducive to liv-
ing a life in dignity.’1 These words highlight the importance of the right to health as an interna-
tional human right.This chapter adds onto the work in the earlier chapters, by examining how
this fundamental right operates in Hong Kong.The analysis will proceed in two parts. First, it
will be contended that only a small portion of the right to health is incorporated into Hong
Kong law. The majority of it is excluded from the corpus of constitutional rights. Nor is the
right sufficiently protected by the common law principles in Hong Kong. Second, two recent
government policies on health and public assemblies will be examined. In those policies, we see
the government has attempted to balance the right to health with other conflicting rights and
policy aims.While this effort is commendable, its balancing exercise is often contestable.

Incorporation: the right to health as a constitutional right?

Hong Kong is a common law jurisdiction that exists within China.The Basic Law2 – its con-
stitutional document – creates within Hong Kong a system of constitutional rights. Unlike the
English position under the Human Rights Act 1998,3 a constitutional right under the Basic Law
is overriding: if primary legislation is found incompatible with it, the courts may directly strike

1 Committee on Economic, Social and Cultural Rights, CESCR General Comment No. 14:The Right to the Highest
Attainable Standard of Health (Art. 12) (11 August 2000) [1].
2 The Basic Law of the Hong Kong Special Administrative Region of the People’s Republic of China.
3 Edward Lui and Michelle Yik Yu Wong, ‘Subordinating Subordinate Legislation under the Human Rights Act
1998’ (2020) 136 LQR 354, 356.

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 Edward Lui

it down.4 There are two sources of constitutional rights under the Basic Law. The first source
of constitutional rights is from the body of the Basic Law itself. Chapter III of the Basic Law is
titled ‘Fundamental Rights and Duties of the Residents.’5 It contains an array of rights, such as
the right to equality,6 the right to vote,7 the freedom of assembly,8 and the freedom of speech.9
There are other some rights which can be found from other chapters of the Basic Law,10 such
as the right to property.11 The second source of constitutional rights is the Hong Kong Bill of
Rights.12 Article 39(1) of the Basic Law provides that

The provisions of the International Covenant on Civil and Political Rights [ICCPR],
the International Covenant on Economic, Social and Cultural Rights [ICESCR] …
as applied to Hong Kong shall remain in force and shall be implemented through the
laws of the Hong Kong Special Administrative Region.13

This may create the impression that the Basic Law thereby incorporates the ICCPR and
ICESCR within Hong Kong’s framework of constitutional rights. This impression must be
resisted. The article only relates to the covenants ‘as applied to Hong Kong.’ This reflects the
dualist principle: obligations in international law do not form part of the domestic law, unless
and until the obligations are incorporated by domestic legislation. As a result, only the parts
of the ICCPR and ICESCR that are incorporated by local legislation will form part of the
constitutional rights in Hong Kong. The contrary is also true: if they are not so incorporated,
they will not become constitutional rights – whether or not this involves a breach of the treaty
obligations in international law.14 This is where the Hong Kong Bill of Rights15 comes into play.
It implements by local legislation the ICCPR rights to Hong Kong.16 Accordingly, such rights
also form part of the constitutional rights in Hong Kong.
Let us apply this approach to the ICESCR. It is true that China – Hong Kong’s sovereign
– is a party to the ICESCR.17 But per Article 39(1) of the Basic Law (and the dualist principle
which it embodies), the ICESCR is not thereby incorporated within Hong Kong.There must
be additionally a piece of implementing legislation in Hong Kong for the ICESCR rights to
achieve constitutional status. It is clear that in Hong Kong, there is no comprehensive incorpora-

4 Ng Ka Ling v Director of Immigration (1999) 2 HKCFAR 4, 25; Kemal Bokhary, ‘Judicial Striking-Down of
Unconstitutional Legislation’ (2020) 50(1) Hong Kong Law Journal 77, 80–81.
5 Dinusha Panditaratne, ‘Basic Law, Hong Kong Bill of Rights and the ICCPR’ in Johannes Chan and CL Lim
(eds), Law of the Hong Kong Constitution (2nd edn, Sweet & Maxwell 2015) [16.032], [16.054].
6 The Basic Law (n 2) Art 25.
7 ibid Art 26.
8 ibid Art 27.
9 ibid.
10 Hysan Development Co Ltd v Town Planning Board (2016) 19 HKCFAR 372 [33].
11 Basic Law (n 2) Arts 6, 105.
12 Panditaratne (n 5) [16.054].
13 Basic Law (n 2) Art 39(1).
14 Ubamaka Edward Wilson v Secretary for Security (2012) 115 HKCFAR 743 [43]; GA v Director of Immigration (2014)
17 HKCFAR 60 [58]; Comilang Milagros Tecson v Director of Immigration (2019) 22 HKCFAR 59 [74].
15 Contained in the Hong Kong Bill of Rights Ordinance (Cap 383).
16 Bokhary (n 4) 78, 80. But see Panditaratne (n 5) [16.018] for some qualifications to this position, which are not
here relevant.
17 Michael Ramsden and Luke Marsh, ‘Refugees in Hong Kong: Developing the Legal Framework for Socio-
Economic Rights Protection’ (2014) 14 Human Rights Law Review 267, 268.

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tion of the ICESCR into a single piece of domestic legislation.18 This means that the rights in
the ICESCR – including the right to health – do not generally form part of the constitutional
rights in Hong Kong. Comilang illustrates this. In this case, the applicants were respectively
mothers (with no right to abode in Hong Kong) and children (with a right to abode in Hong
Kong).The Director of Immigration refused to grant the mothers an extension of permission to
remain in Hong Kong and take care of their children.The applicants applied for judicial review
and partly relied on Article 10(1) of the ICESCR, which stipulates that ‘the widest possible pro-
tection and assistance should be accorded to the family, which is the natural fundamental group
unit of society.’19 The court rejected their application based on the ICESCR:

The appellants’ reliance on ICESCR 10 is unsustainable for the simple reason that the
ICESCR is an international treaty and under the common law dualist principle is not
self-executing. Unless and until made part of Hong Kong domestic law by legislation,
the provisions of such a treaty do not confer or impose any rights or obligations on
individual citizens.20

The same point applies to the right to health embodied by the Universal Declaration of Human
Rights (UDHR).There is a debate as to whether the UDHR is merely soft law (i.e. creating no
international legal obligations) or has been incorporated as part of customary international law
(thus creating international legal obligations).21 Regardless of this debate, since the rights under
the UDHR were not incorporated by local legislation, they do not form part of the constitu-
tional rights in Hong Kong.22 There is, therefore, no general recognition of the right to health as
a constitutional right within Hong Kong.
This analysis is, however, subject to three possible exceptions – all of which were deficient
to incorporate the right to health into Hong Kong law.The first exception is that there can be
an ‘incorporation of individual provisions of the [ICESCR] by different statutes.’ If there is an
individual statute that incorporates the right to health, it can still form part of the constitutional
right in Hong Kong.23 This however only offers limited help to enforce the right to health in
Hong Kong for two reasons.The first reason is that the right to health covers a broad range of
matters. It extends beyond healthcare, and covers a wide range of socio-economic factors that
promote conditions for a healthy life, such as food and nutrition, housing, water, sanitation,
working conditions, and the environment.24 Unless there is a statute that simply incorporates the
right to health in its entirety, it is rather unlikely that individual statutes can manage to cover the
whole range of matters protected by the right to health.The second reason is that this method is
dependent upon the legislative process in Hong Kong: there must be an implementing legisla-
tion for the right to health. By Hong Kong’s constitutional system, this would require the Chief
Executive’s (the head of the government) consent for such a legislative bill to be initiated.25 It

18 GA v Director of Immigration (n 14) [60].

19 ICESCR Art 10(1).
20 Comilang Milagros Tecson v Director of Immigration (n 14) [74].
21 See, e.g., Li-Ann Thio, ‘Reading Rights Rightly:The UDHR and Its Creeping Influence on the Development
of Singapore Public Law’ [2008] Singapore Journal of Legal Studies 264, 282–83.
22 In re an Application by Wong Chun-sing and Ng Fook-yiu for Judicial Review [1984] HKLR 71, 74–75.
23 GA v Director of Immigration (n 14) [60(1)].
24 John Tobin, The Right to Health in International Law (OUP 2012) 126–30.
25 The Basic Law (n 2) Art 74; Benny Tai, ‘The Chief Executive’ in Johannes Chan and CL Lim (eds), Law of the
Hong Kong Constitution (2nd edn, Sweet & Maxwell 2015) [7.159]–[7.166].

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would also require the majority support in the Legislative Council of Hong Kong (LegCo),
which has historically always been pro-government.26 In other words, for the right to health to
be implemented by legislation, the government must willingly impose this burden upon itself.
This is not impossible but is far from a satisfactory way to guarantee the right to health.
The second exception is that the right to health may be partly recognised as a constitutional
right through the Basic Law and the Hong Kong Bill of Rights. Let us first examine the Basic
Law. Article 138 of the Basic Law provides that ‘the Government of the Hong Kong Special
Administrative Region shall, on its own, formulate policies to develop Western and traditional
Chinese medicine and to improve medical and health services.’27 This somewhat provides a restric-
tion towards the government’s healthcare policies. It requires the government to develop and
maintain an effective public healthcare system that responds to changing social, economic, and
public needs. It also forbids the government from making changes to the healthcare policies that
are ‘not a development and improvement based on the existing system.’28
The critic may argue that this suffices to recognise a right to health in Hong Kong.The issue
with this argument is threefold. First, Article 138 only requires the government to ‘improve.’ It
neither sets out an end-goal to be achieved by the government, nor does it formulate itself as
a fundamental right for the citizens. This is to be contrasted with Article 12 of the ICESCR.
It makes clear that it is the ‘right of everyone’ to have the ‘enjoyment of the highest attainable
standard of physical and mental health.’29 Without even delving into the specifics, Article 12
already has a better edge in protecting the right to health. Second, Article 12 provides much
more specific protections for the right to health. The critic may immediately retort by saying
that Article 2(1) of the ICESCR provides that ICESCR rights are to be progressively realised;
that is no less vague than what Article 138 states.30 This criticism is false.As the UN Committee
on Economic, Social and Cultural Rights explains:

The progressive realization of the right to health over a period of time should not be
interpreted as depriving States parties’ obligations of all meaningful content. Rather,
progressive realization means that States parties have a specific and continuing obliga-
tion to move as expeditiously and effectively as possible towards the full realization of
article 12.31

The critic’s claim is further refuted by Article 12(2) of the ICESCR. It helpfully specifies the
steps which states parties must take to achieve the full realisation of the right to health, such as
‘the prevention, treatment and control of epidemic, endemic, occupational and other diseases.’
By doing so, it provides specific guarantees to the right to health – a matter which the Basic Law
has failed to achieve.32 Third, Article 12 has a broader scope than Article 138. Article 138 only

26 Po Jen Yap,‘Twenty Years of the Basic Law: Continuity and Changes in the Geoffrey Ma Court’ (2019) 49 Hong
Kong Law Journal 209, 213.
27 The Basic Law (n 2) Art 138 (emphasis added).
28 Catholic Diocese of Hong Kong v Secretary for Justice [2007] 4 HKLRD 483 [122]; Fok Chun Wa v Hospital Authority
[2008] HKCFI 1143 [103], [104].
29 ICESCR Art 12(1).
30 This line of the argument on the vagueness of Art 12 is prevalent: see, e.g. David P. Fidler, International Law and
Infectious Diseases (OUP 1999) 197; Onora O’Neill,‘The Dark Side of Human Rights’ (2005) 81(2) International
Affairs 427, 428, 433–34.
31 Committee on Economic, Social and Cultural Rights (n 1) [31].
32 Michael Ramsden,‘Using the ICESCR in Hong Kong Courts’(2012) 42 Hong Kong Law Journal 839, 842.

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deals with the improvement of healthcare services.As explained earlier, the right to health under
Article 12 extends beyond the mere provision of healthcare services. For these reasons, the Basic
Law’s provision on healthcare services is miles apart from the right to health.
Let us then turn to the Hong Kong Bill of Rights. As explained earlier, it confers constitu-
tional status on the ICCPR rights.This provides a partial – albeit limited – recognition of the
right to health in Hong Kong. For instance, the Hong Kong Bill of Rights recognises the right
to life.33 It has been held that this replicates the Article 2 (right to life) jurisprudence under the
European Convention on Human Rights.34 If so, the Hong Kong government will have a duty
to take appropriate steps to safeguard the lives of those within its jurisdiction.35 In the context
of healthcare, it will preclude the government from denying life-saving emergency treatment
where it is known a patient’s life is in danger.36 It will also require the government to take nec-
essary steps to avoid a systemic failure of hospital services – by having appropriate regulatory
measures in place – if the failure may deprive patients of life-saving emergency treatment.37 It is
not disputed that this gives partial effect to the right to health. But this is far from sufficient to
cover the many important matters under the right to health.
The third exception is the principles of administrative law: these common law principles may
still be receptive of the rights in ICESCR, although these rights do not qualify as constitutional
rights in Hong Kong. Ramsden and Marsh have suggested two such possibilities. The first is
the principle of legitimate expectation.They suggested that since Hong Kong is bound by the
ICESCR, the applicants may argue that they have a ‘legitimate expectation that the govern-
ment would respect their rights under these instruments.’38 If so, this expectation must be taken
into account by the government in its decisions.39 And if the government wishes to depart from
the expectation, it must offer its reasons for doing so.40 The second is the doctrine of anxious
scrutiny.Typically, the court may only find a decision irrational if it is ‘so unreasonable that no
reasonable authority could ever come to it.’41 Per this doctrine, the court may apply a more
rigorous form of rationality review ‘according to the gravity of the issue which the decision
determines.’42 Ramsden and Marsh suggested that the fact that the matter concerns an ICESCR
right may engage the doctrine.43
The problem with their argument is a lack of support in the positive law. It assumes a judicial
attitude that is willing to give effect to the ICESCR rights – a willingness that is only pre-
cluded by a lack of implementation in Hong Kong. So that when it comes to the common law,

33 The Hong Kong Bill of Rights (n 15) Art 2(1).

34 Song Rai v The Coroner of Hong Kong [2011] 2 HKLRD 245 [20]; SW v The Secretary for Justice [2019] 1 HKLRD
768 [44].
35 Elizabeth Wicks, Human Rights and Healthcare (Hart 2007) 18; William A. Schabas, The European Convention on
Human Rights:A Commentary (OUP 2015) 122; Lopes de Souza Fernandes v Portugal (2018) 66 EHRR 28 [164].
36 Lopes (n 35) [191]; see, e.g. Mehmet Senturk v Turkey (2015) 60 EHRR 4.
37 Lopes (n 35) [192]; Aleydis Nissen, ‘A Right to Access to Emergency Health Care: The European Court of
Human Rights Pushes the Envelope’ (2017) 26(4) Medical Law Review 693, 696; see, e.g. Asiye Genc v Turkey
App no 24109/07 (ECHR, 27 April 2015).
38 Ramsden and Marsh (n 17) 287.
39 Ng Siu Tung v Director of Immigration (2002) 5 HKCFAR 1 [94], [351]; Chung Kwok Man v The Hong Kong Housing
Authority [2016] 3 HKLRD 592 [56].
40 Cathay Pacific Airways Flight Attendants Union v Director-General of Civil Aviation [2007] 2 HKC 393 [37]; Chung
(n 39) [56].
41 Associated Provincial Picture Houses Ltd v Wednesbury Corporation [1948] 1 KB 223, 234.
42 Bugdaycay v Secretary of State for the Home Department [1987] AC 514, 531.
43 Ramsden and Marsh (n 17) 287.

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the courts will seize the opportunity and give effect to such rights. This assumption is highly
contestable. The prevailing judicial view in Hong Kong law is that the ICESCR is merely
‘promotional’ and ‘aspirational.’ It only reflects ‘what it is hoped to be achieved in the future.’44
Unlike the ICCPR, it does not create ‘immediate and absolute rights.’The suggestion that ‘the
ICESCR creates legitimate expectation’ has, therefore, been described as ‘artificial.’45 Ramsden
recognised this impediment to his argument.46 His response is to criticise this view.As he rightly
pointed out, the prevailing judicial review has misunderstood the nature of the ICESCR (e.g.
it also contains immediate duties).47 But this does not detract from the reality of the prevailing
judicial view in Hong Kong: that the rights in ICESCR are ‘aspirational’ only. It is perforce
unlikely that the Hong Kong courts will assume a contrary attitude in the area of administrative
law – and thereby provide strong protections to the right to health.
The lukewarm judicial reception of the ICESCR rights, including the right to health, is
evidenced by Clean Air.48 In this case, the applicant argued that the government has failed to
take sufficient steps to combat air pollution in Hong Kong. This includes a broad range of
allegations, such as a failure to rationalise bus routes and a failure to regulate the use of diesel
fuels.The applicant relied in part on the right to health under Article 12 of the ICESCR.The
court rejected the application. Its reasoning is simple.The measures to combat air pollution (e.g.
the regulation of diesel fuels) is a matter of government policy. Such policy decisions engage
social and economic factors.And the court must not go into the merits of the policies adopted
by the government.49 The court made this point without invoking the argument that ICESCR
rights are not directly enforceable in Hong Kong. Its point is simply that the nature of the matter
covered within the right to health is not for the courts to adjudicate upon. This reflects what
Karen Kong observed as a ‘strong judicial attitude that the courts should not be used as a forum
to discuss socioeconomic policies.’50

Implementation and balancing: the right to health in government policies

Despite the problems with incorporating the right to health into Hong Kong law, this may not
be the end of the story. Even if the judicial remedies are not available, administrative remedies
may still be available to give effect to the right to health.51 In other words, the right to health can
be implemented through various government policies without the corresponding judicial rec-
ognition. Recognising the right to health through implementation alone is in principle possible.
In Hong Kong, a large part of its right to health depends upon recognition through the Hong
Kong government’s policies, rather than through the application of public law by the courts. But
such a way of recognising the right to health in Hong Kong faces two hurdles. First, it requires

44 Chan To Foon v Director of Immigration [2001] 3 HKLRD 109, 133 (emphasis original). See also Chan Mei Yee v
Director of Immigration [2000] HKCFI 1521 [45]–[46]; Pagtama, Victorina Alegre v Director of Immigration [2016]
HKCFI 34 [112]–[115].
45 Chan To Foon v Director of Immigration (n 44) 133.
46 Michael Ramsden, ‘Judging Socio-Economic Rights in Hong Kong’ (2018) 16(2) International Journal of
Constitutional Law 447, 457.
47 ibid.
48 Clean Air Foundation Ltd v The Government of the HKSAR [2007] HKCFI 757.
49 ibid [28], [30], [32], [39], [41], [43].
50 Karen Kong, ‘Adjudicating Social Welfare Rights in Hong Kong’ (2012) 10(2) International Journal of
Constitutional Law 588, 589.
51 Xiao Pan, ‘Realising the Right to Health: A Comparative Study of South Africa, the United States and China’
(2015) 45 Hong Kong Law Journal 517, 524, 544.

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the government to act – on its own initiative – upon its international obligations, although there
is no mechanism within the domestic law to compel this. Consequently, the government may
be disincentivised to give effect to the right to health. But as we shall see, this is not the case
with the Hong Kong government. Second, despite a good faith effort, the government may find
it difficult to balance the right to health with other conflicting rights and policy aims. In this
section, we will examine two government policies, both being subordinate legislation, that relate
to the right to health in the context of public assemblies. Both policies feature an interesting
conundrum: the government is required to balance the right to health with other rights and
policy aims. On both occasions, the government’s balancing effort is commendable, although its
balancing exercise remains contestable.

The Prohibition on Face Covering Regulation

On 4 October 2019, the Chief Executive in Council enacted the Prohibition on Face Covering
Regulation.52 The following sections are here relevant. Section 3(1) provides that ‘a person must
not use any facial covering that is likely to prevent identification’ in an ‘unlawful assembly,’
‘unauthorized assembly,’ ‘public meeting,’ or a ‘public procession.’53 These are some technical
terms which we will not delve into here. In essence, the prohibition covers every public assem-
bly, whether or not it is lawfully held. A ‘facial covering’ means ‘a mask or any other article of
any kind … that covers all or part of a person’s face.’54 A person who contravenes section 3(1)
will commit an offence, which is punishable by imprisonment.55 Section 4(1) provides that a
person will have a defence if he has ‘lawful authority’ or ‘reasonable excuse’ for using a facial
covering.56 And a reasonable excuse includes – but is not limited to – the use of facial cover-
ing for a ‘pre-existing medical or health reason.’57 Section 5 further provides if a person is using
a facial covering in a public place that a ‘police officer reasonably believes is likely to prevent
identification,’ the police officer may stop the person and require him to remove the facial
covering.58 And if the person fails to comply with the police officer’s requirement, he will com-
mit an offence punishable by imprisonment.59 The officer is thereupon empowered to forcibly
remove the facial covering.60
The Face Covering Regulation was enacted as a response to Hong Kong protests since June
2019,61 which have grown increasingly violent.The government’s reasoning is that violent protest-
ers are facilitated by wearing facial coverings. First, facial covering ‘emboldens’ protesters to ‘engage
in violent or unlawful acts which they may not otherwise perform without concealment.’ The
Face Covering Regulation therefore helps to curb the violence and to ensure ‘peaceful protests

52 Prohibition on Face Covering Regulation (Cap 241K).

53 ibid s 3(1)(a)–(d).
54 ibid s 2.
55 ibid s 3(2).
56 ibid s 4(1).
57 ibid s 4(3)(c).
58 ibid s 5(1), (2)(a).
59 ibid s 5(3).
60 ibid s 5(2)(b).
61 For the protests, see the discussion in Johannes Chan, ‘Ten Days That Shocked the World: The Rendition
Proposal in Hong Kong’ (2019) 49(2) Hong Kong Law Journal 431; Cora Chan, ‘Demise of “One Country,
Two Systems”? Reflections on the Hong Kong Rendition Saga’ (2019) 49(2) Hong Kong Law Journal 447;
Albert HY Chen, ‘A Perfect Storm: Hong Kong-Mainland Rendition of Fugitive Offenders’ (2019) 49(2)
Hong Kong Law Journal 419.

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and demonstrations will stay that way.’62 Second, facial covering makes it difficult for the protesters
to be ‘identified, arrested and successfully prosecuted.’The Facial Covering Regulation therefore
assists in law enforcement, such as police arrests and identification via eyewitness and closed-circuit
television (CCTV) evidence.63 The policy aim of the government thus requires prohibiting the
wearing of facial coverings, including face masks, in public assemblies.
This may however have implications for the right to health. As Meier and Mori suggested,
achieving the highest attainable standard of health necessarily requires states to prevent, treat, and
control diseases, for the simple reason that they may affect the general health of the population.64
The modern and well-known example is, of course, COVID-19. If the government prohibits
the wearing of face masks in public assemblies, it will undermine the efforts of disease control
and increase the risks of spreading COVID-19. Indeed, it is the government’s own advice that
citizens should wear face masks in the outdoors.65 This advice is particularly true for the public
assemblies that may amass large crowds in close proximity.
The critic may perforce find it tempting to criticise the Face Covering Regulation for its lack
of regard for the right to health.Yet the matter is more nuanced, for three reasons. First, it must
be remembered that the Face Covering Regulation does not prohibit the wearing of face masks
in public generally. It only targets public assemblies. Therefore, its impact on the right to health
is limited. Second, the Face Covering Regulation was enacted in October 2019. COVID-19
was not at the time an issue: the first confirmed case of COVID-19 in Hong Kong was on 23
January 2020.66 So, judging the matter at the time of October 2019, the health risk that the Face
Covering Regulation may pose is much lower than that at present. Third, despite this, the Face
Covering Regulation has made provisions for health concerns. Section 4 permits the wearing of
facial coverings if a ‘reasonable excuse’ exists.The wearing of face masks for a ‘pre-existing medical
or health reason’ is expressly specified as one such excuse.67 This excuse is obviously inserted for
public health reasons and displays an acute awareness by the government of implications that the
Face Covering Regulation may have on the right to health.The definition of ‘reasonable excuse’
in section 4 is also non-exhaustive. It has been suggested that, in light of the present situation, the
wearing of face masks to avoid contracting COVID-19 constitutes a ‘reasonable excuse.’68 Indeed,
the government has so conceded in a judicial challenge against the Face Covering Regulation.69

62 Kwok Wing Hang v Chief Executive in Council [2020] 1 HKLRD 1 [133]; Security Bureau, ‘Legislative Council
Brief: Emergency Regulations Ordinance (Cap. 241) Prohibition on Face Covering Regulation’ (October 2019)
[2]–[3] www.sb.gov.hk/eng/antimask/LegCo%20Brief%20(Eng)%20(4.10.2019)%20Final.pdf accessed 28 June
2020.
63 Kwok Wing Hang v Chief Executive in Council (n 62) [134].
64 Benjamin Mason Meier and Larisa M. Mori, ‘The Highest Attainable Standard: Advancing a Collective Human
Right to Public Health’ (2005) 37 Columbia Human Rights Law Review 101, 102, 113–15, 117–18, 121–25,
127; ICESCR,Art 12(2)(c).
65 The Government of the Hong Kong Special Administrative Region, ‘Health Advice’ www.coronavirus.gov.hk/
eng/health-advice.html accessed 28 June 2020.
66 Elizabeth Cheung,‘China Coronavirus: Death Toll Almost Doubles in One Day as Hong Kong Reports Its First
Two Cases’ South China Morning Post (Hong Kong, 22 January 2020) www.scmp.com/news/hong-kong/he
alth-environment/article/3047193/china-coronavirus-first-case-confirmed-hong-kong accessed 28 June 2020.
67 Face Covering Regulation (n 52) s 4(1), (3)(c).
68 SCMP Editorial,‘Suspending Mask Ban Should Be Considered during the Epidemic’ South China Morning Post
(Hong Kong, 10 April 2020) www.scmp.com/comment/opinion/article/3079450/suspending-mask-ban-shoul
d-be-considered-during-pandemic accessed 28 June 2020.
69 Alvin Lum and Chris Lau,‘What Happens If Hong Kong Court Upholds Mask Ban Amid Coronavirus Pandemic’
South China Morning Post (Hong Kong, 8 April 2020) www.scmp.com/news/hong-kong/politics/article/30788
51/remember-mask-ban-what-happens-if-hong-kong-court-upholds accessed 28 June 2020.

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This shows that, despite a lack of incorporation into Hong Kong law, the government is will-
ing to give effect to the right to health. It has chosen not to relentlessly pursue its policy aim and
has, instead, balanced it with the right to health.This is so, although no judicial review may lie
for the government’s failure to implement the right to health.While the government should be
commended for doing so, its balancing exercise within the Face Covering Regulation is con-
testable.The primary candidate for criticism is section 5. It confers a wide power on the police
officer: as long as he reasonably believes that the facial covering is likely to prevent identification,
he may ask that a face mask be taken off. It is not limited to a public assembly (it applies to every
person in a public place), it is not necessary for the officer to suspect that the person is commit-
ting any crime, and it is not necessary for the person to intend to conceal his identity by wearing
the facial covering.70 As the Court of Appeal suggested, ‘section 5 confers power to the police
to make a request to remove facial coverings in an entirely uneventful situation.’71 It permits a
curtailment of the right to health, i.e. the health risks posed by the removal of face masks, where
the policy aim underlying the Face Covering Regulation is not engaged.
Criticism may also be laid against section 4.The government has now accepted that wear-
ing face masks to prevent contracting COVID-19 constitutes a ‘reasonable excuse.’ But this
concession is likely due to the seriousness of the COVID-19 crisis. It is unclear if section 4 also
exonerates the wearing of face masks to prevent contracting diseases generally (e.g. the flu).This is
unlikely to be so, for two reasons. First, section 4 only specifically exonerates ‘pre-existing’ medi-
cal causes (e.g. if the person has already been infected). Had the government intended to exclude
‘potential’ medical causes as well, it could have easily said so. Second, the excuse that ‘I was only
wearing the mask not to contract the flu’ is too convenient. It can easily remove the chances of
a successful prosecution under section 3 altogether. If this analysis is correct, the Face Covering
Regulation will have had limited regard to disease prevention generally, beyond the context of
COVID-19. But the right to health is not just about the latter, but the former as well.72

The Prohibition on Group Gathering Regulation

Then we turn to the Prevention and Control of Disease (Prohibition on Group Gathering)
Regulation (hereinafter the Group Gathering Regulation).73 It was enacted by the Chief
Executive in Council on 29 March 2020. The following sections are here relevant. Section
3(1) specifies that ‘no group gathering may take place in any public place during a speci-
fied period.’74 At the time of enactment, ‘group gathering’ means a ‘gathering of more than 4
persons.’75 This general prohibition does not apply to ‘exempt group gatherings specified in
Schedule 1.’76 Schedule 1, at the time of enactment, contains 12 exceptions. They include, for
instance, group gatherings ‘at a place of work for the purposes of work’ and ‘for the conduct of
proceedings in a court.’77
What is notable is that the Group Gathering Regulation contains no exceptions for public
assemblies. So public assemblies – insofar as they constitute a ‘group gathering’ – are entirely

70 Kwok Wing Hang v Chief Executive in Council (n 62) [185].

71 Leung Kwok Hung v Secretary for Justice [2020] HKCA 192 [268].
72 ICESCR Art 12(2)(c).
73 Prevention and Control of Disease (Prohibition on Group Gathering) Regulation (Cap 599).
74 ibid s 3(1).
75 ibid s 2.
76 ibid s 3(2).
77 ibid sch 1, paras 4, 7.

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prohibited. This point deserves highlighting, since the Hong Kong protests (which led to the
Face Covering Regulation) did not cease in 2020. So the practical effect of the Group Gathering
Regulation is that these protests cannot lawfully continue.This inevitably constitutes a restric-
tion of the freedom of assembly. On the other hand, the government has explained that the
Group Gathering Regulation was intended to implement social distancing and thereby effect
disease control over COVID-19.78 And disease control is, as explained earlier, required by the
right to health.There is thus a conflict between the right to health and the freedom of assembly
which underlies the Group Gathering Regulation.
Tobin argued that, in relation to ‘public health regulations such as quarantining of persons
with infectious diseases,’ the human rights treaty monitoring bodies have ‘tended to overlook
the potential for conflicting rights to exist in such contexts and, as a consequence, have failed to
provide states with any substantive guidance as to how to resolve such conflicts.’79 An exception
is General Comment No 14.There, the UN Committee explained that ‘issues of public health
are sometimes used by States as grounds for limiting the exercise of other fundamental rights’.
In such a case, the states have the burden to justify such limitations, which

[M]ust be in accordance with the law, including international human rights standards,
compatible with the nature of the rights protected by the Covenant, in the interest of
legitimate aims pursued, and strictly necessary for the promotion of the general wel-
fare in a democratic society.80

Similarly,Tobin argues that ‘legislative measures designed to protect health must not impose an
unreasonable limitation on other rights to which individuals are entitled under international
law.’ Any such limitations must ‘pursue a legitimate aim’ and be ‘proportionate’ to achieve that
aim.81 This reflects the proportionality test which is widely used in UK and Hong Kong law.82
At first blush, the Group Gathering Regulation may be criticised as ignoring the freedom
of assembly altogether. McCrudden, for instance, has argued that ‘the [COVID-19] crisis has
been used an excuse’ by the Hong Kong Government to ‘introduce authoritarian measures
restricting embarrassing or threatening political dissent.’83 This conclusion perhaps goes too far.
As McCrudden acknowledges, social distancing in protests is at best difficult and inevitably gives
rise to a significant risk of COVID-19 infections.84 In the UK, for instance, Boris Johnson has
opposed the Black Lives Matter protests for the reason that they flout social distancing.85 Hong
Kong’s Group Gathering Regulation is undoubtedly motivated, at least in part, by public health

78 Food and Health Bureau, ‘Legislative Council Brief: Prevention and Control of Disease Ordinance (Cap.599);
Prevention and Control of Disease (Requirement and Directions) (Business and Premises) Regulation; Prevention
and Control of Disease (Prohibition on Group Gathering) Regulation’ (March 2020) [9]. www.legco.gov.hk/yr1
9-20/english/subleg/brief/2020ln031_032_brf.pdf accessed 28 June 2020.
79 Tobin (n 24) 180–81.
80 Committee on Economic, Social and Cultural Rights (n 1) [28].
81 Tobin (n 24) 181–82.
82 See, e.g. Bank Mellat v HM Treasury (No 2) [2014] AC 700 [20]; Hysan (n 10) [52]–[53].
83 Christopher McCrudden,‘Democracy, Protests, and COVID-19: The Challenge of (and for) Human Rights’ (UK
Constitutional Law Association, 19 June 2020). https://ukconstitutionallaw.org/2020/06/19/christopher-mccru
dden-democracy-protests-and-covid-19-the-challenge-of-and-for-human-rights/ accessed 28 June 2020.
84 ibid.
85 Vincent Wood, ‘Boris Johnson Calls for End to Black Lives Matter Protesters “Flouting Social Distancing”’ The
Independent (London, 8 June 2020) www.independent.co.uk/news/uk/politics/protests-social-distancing-boris
-johnson-coronavirus-black-lives-matter-uk-a9555486.html accessed 28 June 2020.

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 The right to health in Hong Kong

concerns. Indeed, as the COVID-19 numbers have lessened in Hong Kong, the government
has relaxed the restrictions under the Group Gathering Regulation.The number of participants
allowed in a group gathering was increased to 8 in May 202086 and further increased to 50 the
next month.87 This is inconsistent with a claim that the Group Gathering Regulation was solely
enacted to quash political dissent.
But the government’s balancing exercise under the Group Gathering Regulation is not fault-
less either. In Hong Kong, the freedom of assembly is judicially recognised as a ‘fundamental
right.’ It lies ‘at the foundation of a democratic society,’ and is of ‘cardinal importance for the
stability and progress of society.’88 In particular, this involves a ‘positive duty on the part of the
Government … to take reasonable and appropriate measures to enable lawful assemblies to
take place peacefully.’89 Under the Group Gathering Regulation, the government takes a binary
approach: if there are more than 50 participants, the assembly is prohibited, but if not, the assem-
bly is permitted.90 The existence of 50 participants defines the level of health risks that may be
tolerated.This, however, ignores the positive role that the government may play in facilitating a
public assembly with more than 50 participants, by introducing measures to further alleviate the
health risks involved. For instance, the Group Gathering Regulation may be amended to permit
assemblies with more participants, provided the assemblies take place in a more ventilated route
and all participants wear face masks throughout. This may mean that the current restriction
on the freedom of assembly is not ‘strictly necessary’ to advance the right to health, which the
General Comment No 14 requires.91

Conclusion
In conclusion, this chapter has examined how the right to health operates in Hong Kong. In
terms of its incorporation, Hong Kong has fared poorly: the right to health is not incorporated
as a constitutional right, and the common law has done little to help. The Hong Kong courts
are generally reluctant to recognise ICESCR rights, including the right to health. In term of
its implementation, the Hong Kong government has demonstrated a willingness to give effect
to the right to health, despite a lack of judicial enforcement. However, its balancing exercise
is on occasion contestable. Two explanations are possible for this. The first explanation is that
both policies we have examined were made on an urgent basis, in the face of a contingency
that required immediate redress.The second explanation is that the government is not properly
equipped to balance the right to health with conflicting rights and policy aims. This is some-
thing which the courts are more readily equipped to do92 by way of judicial review.93 If the latter
explanation is sound, it will be necessary to give effect to the right to health not only through

86 Prevention and Control of Disease (Prohibition on Group Gathering) (Amendment) (No. 2) Regulation 2020, s
3; Food and Health Bureau,‘Legislative Council Brief: Prevention and Control of Disease Ordinance (Cap. 599);
Prevention and Control of Disease (Prohibition on Group Gathering) (Amendment) (No. 2) Regulation 2020’
[12] www.legco.gov.hk/yr19-20/english/subleg/brief/2020ln059_brf.pdf accessed 28 June 2020.
87 Prevention of Control of Disease (Prohibition on Group Gathering) (Amendment) (No. 5) Regulation 2020, s 3.
88 Leung Kwok Hung v HKSAR (2005) 8 HKCFAR 299 [1]–[2].
89 ibid [22].
90 The latter point is subject to the other requirements in the Public Order Ordinance (Cap 245), which is beyond
the scope of this chapter.
91 Committee on Economic, Social and Cultural Rights (n 1) [28].
92 NW Barber,‘Self-Defence for Institutions’ (2013) 72(3) CLJ 558, 573.
93 Philip Sales,‘Partnership and Challenge:The Courts’ Role in Managing the Integration of Rights and Democracy’
[2016] PL 456, 468.

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 Edward Lui

administrative measures but also through judicial enforcement. Doing so would offer a much
stronger recognition of the right to health in Hong Kong.
This chapter also lays the foundation for how the right to health may be advanced in Hong
Kong.This follows from the foregoing analysis as to the current flaws of the right. One of these
flaws is a judicial reluctance to give effect to the right to health by way of human rights and
administrative law, and thus an apt remedy is judicial activism. By way of example, Lord Kerr has
suggested that ‘the time has come for the exception to the dualist theory in human rights con-
ventions … to be openly recognised.’94 If this exception is adopted by the Hong Kong courts,
it will qualify the aforementioned position in Comilang and allow the right to health to be ‘an
enforceable right in domestic law.’95 An alternative route is via the Hong Kong government
and the historically pro-government LegCo. If there can be a piece of implementing legisla-
tion for the right to health – just as what the Hong Kong Bill of Rights does for the ICCPR
rights – the right to health can be incorporated as a constitutional right.This will, as explained
earlier, have to be done on the government’s own initiative. By contrast, the role for the general
citizens of Hong Kong is relatively limited.They have no direct means to alter judicial attitudes,
or to compel the government to incorporate the right to health. And without either of these
events happening, the citizens can unlikely resort to judicial review to recognise the right to
health. Clean Air illustrates this. Accordingly, the most realistic way out for general citizens is
through generating widespread public support for the right to health in Hong Kong.The reality,
however, remains cruel: unless the courts or the government nod their heads, a general right to
health in Hong Kong remains only an aspiration.96

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96 Chan To Foon v Director of Immigration (n 44) 133.

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 10
‘DIGNITY’ IN THE
ADJUDICATION OF HEALTHCARE
RIGHTS IN INDIA
Sushant Chandra

Theoretical foundation of right to health in India

Human dignity has its root in the Kantian ethical philosophy.The Kantian categorical impera-
tive requires that human beings should never be treated merely as a means, but simultaneously
as an end.1 Kant uses the term Wurde that translates to dignity, and refers to the term 16 times in
Groundwork to the Metaphysics of Morals.2 Kant uses dignity to mean ‘unconditional, incomparable
value.’3 It is, in this sense, that human dignity is ‘non-derogable’ – a phrase that the Indian courts
have started applying in adjudicating healthcare claims.4 Kant grounded dignity in autonomy
and stated, ‘autonomy is therefore the ground of the dignity of human nature and of every
rational nature.’5 It is accepted that not everyone would agree to this approach to dignity and
other understandings are available.6 It is this idea of autonomy that attributes ‘human beings as
agents capable of making moral choices.’7 Martha Nussbaum expands upon this by stating:

The core idea is that of the human being as a dignified free being who shapes his or
her own life in cooperation and reciprocity with others, rather than being passively
shaped or pushed around by the world in the manner of a ‘flock’ or ‘herd’ animal. A
life that is really human is one that is shaped throughout by these human powers of
practical reason and sociability.8

1 Immanuel Kant, Groundwork of the Metaphysics of Morals edited by Mary Gregor (Cambridge University Press 1997).
2 ibid; also see Michael Mosen, Dignity: It’s History and Meaning (Harvard University Press 2012).
3 Kant (n 1).
4 Mohd Ahmed (minor) v Union of India (2014) 6 HCC (del) 118 (India).
5 Kant (n 1) 43.
6 See, for example, Charles Foster, Human Dignity in Bioethics and Law (Hart 2011).
7 Martha Nussbaum, Women and Human Development:The Capabilities Approach (Cambridge University Press 2000).
See, for example, Amartya Sen,‘Capabilities and Well-Being’ in Martha Nussbaum and Amartya Sen, The Quality
of Life (Clarendon 1993) 30–53.
8 Nussbaum (n 7) 72.

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 Adjudication of healthcare rights in India

The capability approach, as devised by Sen and contributed to by Nussbaum, provides for
holding states accountable to provide access to fundamental basic necessities.9 The theoretical
framework derives its flesh and blood from human dignity grounded in autonomy – ascribing
sacredness to the moral choices each individual has in creating the life of their choice.10 These
capabilities have special status in enabling individuals to pursue the choices they might make.
Which sets of capabilities are emphasised depends on what a given society considers as valu-
able. It is contested whether a common list of capabilities can be made, due to the difficulty
‘in seeing how the exact lists and weights would be chosen without appropriate specification
of the context of their use (which could vary).’11 In explicating the content of ‘social mini-
mum,’ the Supreme Court has held that ‘such facilities and opportunities’12 that enable individu-
als to reach ‘minimum standards of health and civilized living’13constitutes social minimum. The
concept of ‘social minimum’14 or ‘intellectual capability’15 that Indian courts have devised in
responding to socio-economic claims pertaining to healthcare and education are consistent with
theoretical framework espoused by the capability approach.16 For example, the Indian courts
have acknowledged reaching ‘intellectual capability’ as one of the minimum standards required.
Further, in expanding on ‘social minimum,’ Indian courts have also reflectively engaged with
the Directive Principles of State Policies17 and General Comment No 3 issued by the United

9 ibid 6.
10 ibid 6.
11 See K Van Marle, ‘“The Capabilities Approach”, “The Imaginary Domain”, and “Asymmetrical Reciprocity”:
Feminist Perspective on Equality and Justice’ (2003) 11 Feminist Legal Studies, 255–78, 272–73.
12 Consumer Education Research Society v. Union of India (1995) 3 SCC 42 (India) [18].
13 ibid.
14 See Consumer Education Research Society v. Union of India (1995) 3 SCC 42 (India) [18]; Francis Coralie Mullin v.
Administrator of Delhi AIR 1981 SC 746 (India). Initially, the scheme of the state was to simply safeguard life, but
that was changed to ‘dignified life.’ It altered the obligations of the state too to maintain dignified life of individu-
als. One of the ways of doing it is developing ‘condition precedent’ to securing a dignified life. The ‘condition
precedent’ to dignified life also referred to as ‘social minimum’ has its foundations in ‘bare minimum expression
of human self ’ (Francis Carolie Mullin v Administrator of Delhi) and autonomy of individuals. In Carolie, though
obiter, the court ruled:
the question which arises is whether the right to life is limited only to protection of limb or faculty or
does it go further and embrace something more.We think that the right to life includes the right to live
with human dignity and all that goes along with it, namely the bare necessaries of life such as adequate
nutrition, clothing and shelter and facilities for reading, writing and expression oneself in diverse forms,
freely moving about and mixing and commingling with fellow human beings. Of course, the magnitude
and content of the components of this right would depend upon the extent of the economic develop-
ment of the country, but it must, in any view of the matter, include the right to the basic necessities of
life and also the right to carry on such functions and activities as constitute the bare minimum expres-
sion of self.
15 Ramji Tiwari v State of UP and others (1997)1UPLBEC 690 (India).The Allahabad High Court granted equal pay
to teachers teaching in unaided primary school. It grounded its reasoning in teachers playing a pivotal role in
developing ‘intellectual capability’ in students. It also referred to the Supreme Court’s judgments in Andhra Kesari
Education Society v Director of School Education (1988) 4 SC 431(India) and State of Maharashtra v Vikas Sahebrao
Roundale (1992) 5 SC 175(India).
16 Nussbaum’s approach is compatible with a range of different theories about the degree of material equality that
should be guaranteed in a just society from complete egalitarianism, a Rawlsian difference principle, and a focus
on an ample social minimum for all. See Sandra Liebenberg,‘The Value of Human Dignity in Interpreting Socio-
Economic Rights’ (2005) 21 South African Journal of Human Rights 10.
17 Bandhua Mukti Morcha v Union of India,AIR 1984 SC 802 (India):
[T]his right to live with human dignity enshrined in article 21 derives its life breath from the directive
principles of state policy and particularly clauses (e) and (f) of Article 39 and Articles 41 and 42 and, at

169
 Sushant Chandra

Nations Committee on Economic, Social and Cultural Rights.18 The courts have not simply
borrowed the principles from these instruments, but engaged reflectively and applied the reasoning
that Sen employs in resolving issues concerning access to capabilities.19 The courts have held
that a harmonious interpretation between Part III and Part IV can be found by reference to
the dignity inherent in an individual.20 The courts, while laying down social minima, have not
only engaged reflectively with Directive Principles in Part IV and the General Comment, but
have taken into account their institutional limitations in deciding policy issues;21 the urgency
of the claims before them; and impact of denying claims.22 In developing ‘social minima,’ courts
have also been mindful of issues of inadequate budgetary allocation towards healthcare claims;23
improper utilisation of already allocated budgets;24 and inadequate policy measures affecting
important capabilities and thereby impacting choices made by people.25 In adjudicating social
rights cases, there is a growing trend, in locating important interests within autonomy rights that
demand constitutionalisation of socio-economic rights – which were earlier considered to be
non-justiciable.26 In engaging with issues related to judicial legitimacy and institutional com-
petence in devising ‘social minimum,’ the courts have employed dignity to justify demanding
explanations for the use of allocated budget on a given entitlement.27 For example, in Snehlata
v State of UP28 the court directed the state to provide an explanation for its inability to spend
the allocated budget on the healthcare when individual healthcare interest infractions were
rampant in the state.29 The South African Constitutional Court applied this method of engage-
ment in establishing systemic social rights.30 This remedy is particularly welcome, because it
respects the principles of separation of powers and the institutional limitations of the judiciary

the least, therefore, it must include protection of the health and strength of workers men and women,
and of the tender age of children against abuse, opportunities and facilities for children to develop in a
healthy manner and in conditions of freedom and dignity, educational facilities, just and humane condi-
tions of work and maternity relief.These are the minimum requirements which must exist in order to
enable a person to live with human dignity and no state – neither the central government nor any state
government – has the right to take any action which will deprive a person of the enjoyment of these
basic essentials.
18 Mohd Ahmed (minor) v Union of India (n 4) [43]. (The committee, in General Comment No 3, confirmed that
states parties have a core obligation to ensure the satisfaction of, at the very least, minimum essential levels of each of
the rights enunciated in the covenant, including essential primary healthcare.)
19 Sen (n 7).
20 Unnikrishnan v. State of AP (1993) 1 SCC 645 (India).‘[B]oth parts III and IV… have to be balanced and harmo-
nized then alone the dignity of the individual can be achieved.They (fundamental rights and directive principles)
were meant to supplement each other’ (quoting J Shelat and J Grover in Kesavananda Bharati v State of Kerala AIR
1973 SC 1461(India)).
21 State of Punjab v Ram Lubhaya Bagga (1998) 4 SCC 118.
22 Parmanand Katara v Union of India (1989) 4 SCC 286(India); Mohd Ahmed (minor) v Union of India (n 4).
23 Mohd Ahmed (minor) v Union of India (n 4) [52].
24 Snehlata v State of UP PIL NO. 14588 of 2009 (Allahabad High Court) (India).
25 Mohd Ahmed (minor) v Union of India (n 4) [52].
26 See Cecile Fabre, Social Rights Under the Constitution 101 (2000), where she argues that such rights protect the
vital interest individuals have in autonomy and well-being.
27 Snehlata v State of UP, PIL No. 14588 of 2009 (Allahabad High Court) (India).
28 ibid.
29 ibid.
30 Madhav Khosla, ‘Making Social Rights Conditional – Lessons from India’ (2010) International Journal of
Constitutional Law, https://academic.oup.com/icon/article/8/4/739/667097 accessed 19 October 2020.

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 Adjudication of healthcare rights in India

in designing social policies.31 It is interesting how dignity, grounded in autonomy, when used as a
constitutional value can demand, and obtain, beneficial outcomes, while respecting institutional
competence.

Odyssey of healthcare adjudication in India: understanding

the role of ‘dignity’
The judgments of the Supreme Court are finely layered when it comes to applying dignity in
the adjudication of healthcare claims.The method employed in this part in developing Indian
courts’ engagement with the concept of dignity is twofold: first, the nature of dispute and
the degree of intervention expected from the court in seeking the desired outcome will be
explained. Second, it will examine how the courts apply the value of dignity in adjudicating
healthcare claims.
This chapter argues that the courts’ engagement with dignity as a foundational value in
developing health rights’ jurisprudence is most strongly influenced by the fact, that the court
is required to either expand on an existing healthcare interest provided by the executive or to
develop a new one. It has been observed, while analysing the judgments of the Indian courts,
that the courts’ engagement with the concept of dignity have been strongest when they are
asked to expand an existing healthcare interest or develop a new one. The Supreme Court’s
focus on dignity also alludes to an effort on the part of the court to legitimise the outcome
in expanding or developing a new right by deriving support from dignity. While looking at the
conspectus of cases contested before the Supreme Court in the last four decades, the following
categories of healthcare cases could be chiselled out:

(1) The first category comprises of those set of cases where a claim for expanding or develop-
ing the healthcare claim has been brought before the Court in the absence of any legal
instrument providing for the healthcare claim sought.32
(2) The second category comprises of those set of cases where existing legal instruments insuf-
ficiently responded to the healthcare claim, and hence the indulgence of the Court is
sought to fill in the gap.33
(3) The third category comprises of those set of cases where the Court is asked to interpret or
enforce an existing legal instrument covering healthcare claims.34

First category
In the first category, Indian courts exhibit two extreme approaches. It is seen that the courts
were conservative until the late 1980s and refrained from employing a rights-based discourse
in interpreting healthcare claims.The well-established principle of separation of power injunc-
ted the courts from creating new rights in name of interpretivism. In Pt Parmanand Katara, a
social activist filed a social action litigation before the Supreme Court to direct the Union
of India, state governments, and union territories to provide immediate medical assistance to

31 Mark Tushnet, Weak Courts, Strong Rights: Judicial Review and Social Welfare Rights in Comparative Constitutional Law
(Princeton University Press 2008).
32 Parmanand Katara v Union of India (1989) 4 SCC 286; Mohd Ahmed (minor) v Union of India (n 4).
33 Consumer Education Research Society v. Union of India (1995) 3 SCC 42.
34 Paschim Banga Mazdoor Khet Samiti v. State of West Bengal, (1996) 4 SCC 37; State of Punjab v Mohinder Singh
Chawla (1997) 2 SCC 83; State of Punjab v Ram Lubhaya Bagga, (1998) 4 SCC 118.

171
 Sushant Chandra

road accident victims.35 The petitioner appended a news report from the Hindustan Times that
mentioned the case of a person riding a scooter who was knocked down by a speeding car.36 A
Good Samaritan took the injured to the nearest hospital where the doctor refused to treat him
on the ground of medico-legal formalities.37 He was asked to take the injured to another hos-
pital that was 20 km away, and while the injured was rushed to the suggested hospital, he died.38
The Supreme Court’s engagement with Article 21 in this case was inadequate. Article 21 states
that ‘[n]o person shall be deprived of his life or personal liberty except according to procedure
established by law.’ In fact, the Court refers to Article 21 only once in the entire judgment.39 The
Court acted in a conservative way and refrained from engaging with a rights-based discourse. Its
abstention from engaging with the liberty clause (Article 21) led to no interaction with dignity
jurisprudence.The Court, rather, chose to navigate in the safer tides of the professional obligations
of the doctors.40 Justice Mishra, after emphasising Clauses 10 and 13 of the Code of Medical
Ethics, which reaffirms doctors’‘obligations to the sick,’ held:

A doctor at the Government hospital positioned to meet this State obligation is, there-
fore, duty bound to extend medical assistance for preserving life. Every doctor whether
at a Government hospital or otherwise has the professional obligation to extend his
services with due expertise for protecting life.

The recognition of an ethical duty in constituting legal obligation to provide immediate medical
attention forms the basis of Court’s judgment.The judgment is full of ‘professional obligations’
of doctors and there is a mindful abstention from engaging with an approach based on the right
to health. As tersely mentioned at the beginning of this section, the Court refrained from dealing
with issues concerning the executive or legislature due to the principle of separation of pow-
ers, and avoided a rights discourse even in those areas where no legal instrument existed. The
methods adopted by the Court in dealing with the issue is also reflected in the remedy that it
offered in the present case.The Court offered a weak remedy and ordered a wider circulation of
its judgment so that doctors could understand their professional obligations with utmost sincer-
ity. However, the judgment consciously evaded any discussion of sanctions in cases of violations.
The magic that it expected from the Medical Council of India in spelling out and enforcing the
sanctions was just a charade.
The way in which the Indian courts have engaged with the first category of cases has under-
gone a significant change recently as the courts have become more active. In the sequence of
development purely based on time of occurrence, it is imperative to discuss the second and
third categories before we move to see the transition in the approach of the courts under the
first category – those cases where legal instruments don’t cover the healthcare claims. Hence,
this discussion of the first category of cases will continue after discussing the second and third
categories of cases.

35 Parmanand Katara v Union of India (1989) 4 SCC 286 [1].

36 ibid.
37 ibid.
38 ibid.
39 ibid.
40 ibid.

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 Adjudication of healthcare rights in India

Second category
The second category highlights a trend wherein existing legal instruments were insufficient to
respond to healthcare claims brought by the claimants, and hence the indulgence of the court
was sought to fill in the vacuum.41 In Consumer Education and Research Council v Union of India,42
a public interest litigation (PIL) was filed before the Supreme Court to address the health con-
cerns of employees working in asbestos industries. In 74 asbestos industries across nine states,
about 11,000 employees were working. Many of them suffered from asbestosis, a condition that
may lead to lung cancer and other forms of cancer, that occurred primarily due to exposure to
asbestos.The petition sought directions from the Supreme Court to ensure that industries adopt
membrane filter tests and that continuous monitoring of health of employees is undertaken
for 40 years from the date of joining service or for 10 years after retiring, whichever is later,
among other remedies.43 The Supreme Court expanded on the constitutional commitment to
social justice.44 The Court referred to dignity 17 times in its entire judgment, but refrained from
expanding on the concept.45 Although there has been a significant attempt on the part of the
Court to develop a jurisprudence on the right to life under Article 21, and in its view, it invokes
concepts such as social justice,46 social democracy,47 and foundational values, such as liberty,
equality, and fraternity,48 its engagement with dignity is rather casual. Dignity has been used in
three senses: first, as a constitutional goal, it is important to safeguard the dignity of individuals.
The Court observed in paragraph 18:

Social justice is a dynamic device to mitigate the sufferings of the poor, weak, dalits,
tribals and deprived sections of the society and to elevate them to the level of equality
to live a life with dignity of person.

In its effort to develop the concept of social justice, the Court clarified that the state must not
only provide dignity to individuals but also sustain it.49 Second, dignity has been promoted as
an interpretive right under Article 21. The Court developed the right to dignity from Article
38 and Article 39 of the Indian Constitution. It is not new for the Indian courts to develop
jurisprudence under Article 21 from the principles enunciated under directive principles of state
policy.50 The Supreme Court observed:

41 Consumer Education Research Society v Union of India (1995) 3 SCC 42 (India).

42 ibid.
43 ibid [1].
44 ibid [18]
45 ibid [18]–[26].
46 ibid [18].
47 ibid.
48 ibid.
49 ibid [20]:
The jurisprudence of personhood or philosophy of the right to life envisaged under Article 21, enlarges
its sweep to encompass human personality in its full blossom with invigorated health which is a wealth
to the workman to earn his livelihood, to sustain the dignity of person and to live a life with dignity
and equality.
50 Bandhua Mukti Morcha v Union of India (1984) AIR SC 802 (India).

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 Sushant Chandra

The right to human dignity, development of personality, social protection, right to rest
and leisure are fundamental human rights to a workman assured by the Charter of
Human Rights, in the Preamble and Articles 38 and 39 of the Constitution.

Finally, the Court used dignity as constitutional principle demanding respect of individuals due
to their inner worth.At paragraph 28, the Court observed:

Therefore, it must be held that the right to health and medical care is a fundamental
right under Article 21 read with Articles 39(e), 41 and 43 of the Constitution and
make the life of the workman meaning and purposeful with dignity of person.

To sum up, dignity is a constitutional goal; a desired state for individuals that the state must pro-
vide for and sustain; an interpretive right drawing its content from directive principles of state
policy; and a constitutional principle demanding respect for each individual on the grounds of
their inner moral worth, including acceptance of a right to healthcare.These constituents do not
operate in watertight compartments and significantly overlap with one another. In the second
category of cases, the Court’s engagement with dignity is conspicuous but there is no effort on
the part of the Court in theorising the principle and explicating its application.

Third category
The third category of cases comprises those where a legal instrument already covers a healthcare
claim, and the issues pertaining to its interpretation, enforcement, or legality has appeared before
the Court.51 In such cases, the Supreme Court has not engaged with the constitutional value of
dignity at all. Mohinder Singh Chawla52 and Ram Lubhaya Bagga53 are both cases pertaining to the
interpretation of government policy regarding reimbursement claims in cases of treatment in
private hospitals. In Mohinder Singh Chawla, the Court was asked to adjudicate if the treatment in
the referred hospital would include expenses incurred on room, diet, and attendants.The Court
answered the question in the affirmative and did not engage with dignity jurisprudence at all.
However, in Ram Lubhaya Bagga the question before the Court concerned the reimbursement
of additional expenses incurred during treatment when the government policy provided for
reimbursement at the government rate.54 The Supreme Court gave utmost deference to govern-
ment policy and agreed to ‘financial constrain’ as a legitimate reason in the realisation of the
right to health.55 The Court again, like in Mohinder Singh Chawla, did not engage with dignity,
and the only place where it referred to it, did so as a constitutional principle.
The most celebrated case under the third category is Paschim Banga Mazdoor Khet Samity,56
where Hakim Sheikh fell from a train and suffered serious head injuries and brain haemor-
rhage. It was contended by the petitioner that Hakim Sheikh was taken to seven public hos-
pitals where he was refused treatment either due to unavailability of beds or lack of requisite

51 State of Punjab v. Mohinder Singh Chawla (1997) 2 SCC 83; State of Punjab v Ram Lubhaya Bagga (1998) 1 SCR
1120; Paschim Bagga Mazdoor Khet Samiti Khet v State of West Bengal (1996) 4 SCC 37; Laxmi Mandal v Deen Dayal
Hospital Harinagar WP (C) Nos 8853 of 2008.
52 (1997) 2 SCC 83.
53 (1998) 4 SCC 118.
54 ibid [2].
55 ibid [29].
56 Paschim Banga Mazdoor Khet Samity (1996) 4 SCC 37.

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 Adjudication of healthcare rights in India

facilities.57 Finally, Hakim Sheikh was admitted into a private hospital where he incurred Rs.
17,000 on treatment.58 The inquiry committee that was set up by the Court found that in one
hospital capacity to offer him treatment existed; in another, the register maintaining records
of patients had not been maintained; and in Medical College Hospital, Calcutta the junior
doctor should have consulted the senior doctor immediately before refusing Hakim Sheikh.59
The Court held that

the government hospitals run by the State and medical officers employed therein are
duty-bound to extend medical assistance for preserving human life. Failure on the part
of a government hospital to provide timely medical treatment to a person in need of
such treatment results in violation of his right to life guaranteed under Article 21.60

It ruled in favour of Hakim Sheikh by awarding him a compensation of Rs. 25,000. It would
have been interesting to observe the order of the Court had the committee not found the public
hospitals negligent in providing treatment to Hakim Sheikh. This case was the first in which
the Supreme Court stated that financial reasons cannot be cited as justifying limiting access to
healthcare.61 The case has subsequently been referred to in many cases in support of this propo-
sition.62 But this is not an unqualified observation.This was a case where doctors and the state
were duty bound under the existing legal framework to provide medical treatment to patients
taken to public hospitals. Paschim Banga Mazdoor Khet Samiti further shows no interaction with
dignity in expanding on the reasoning and remedy. The Court did not refer to dignity even
once. It simply crafted the remedy locating healthcare claims under Article 21.

First category
We, again, come back to the first category. We have already highlighted how the courts acted
conservatively until the 1980s and viewed healthcare claims through a duty-/obligation-ori-
ented approach. In Parmanand Katara the Supreme Court, while alluding to professional obliga-
tions of doctors, ensured that patients must receive appropriate medical attention, irrespective
of the private or public nature of the hospital. It was also stated that the Court’s deference to
the executive in policymaking and advertent abstention from grappling with a rights-based
discourse justified taking the conservative approach in the 1980s. However, the Court’s engage-
ment with the constitutional value of dignity has increased with time and courts have been
shifting towards a stronger form of interpretivism in creating new forms of rights. This can
be seen in the way the courts crafted remedies by adhering to a duty-/obligation-oriented
approach in the 1980s, but over the years they have shifted to a rights-based discourse with the
advent of judicial activism and a stronger interpretivism.63 This was particularly conspicuous in a
2014 verdict by the Delhi High Court in Mohd Ahmed (minor) v Union of India.64

57 ibid [2].
58 ibid.
59 ibid [7].
60 ibid [9].
61 ibid [16].
62 See Mohd Ahmed (minor) v Union of India (n 4).
63 The second category mentioned earlier helps in showing the transition.
64 Mohd Ahmed (minor) v Union of India (n 4).

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 Sushant Chandra

In Mohd Ahmed, a seven-year-old boy suffered from lysosomal storage disorder (Gaucher)
where his body was unable to process fat and fat got deposited on various body organs which
may have led to his premature demise. Treatment of this disorder is available and costs around
USD 9000 per month. The father of the patient was a rickshaw puller and could not pay for
Ahmed’s treatment.This significant judgment develops the dignity jurisprudence of the courts
in three ways: first, it holds a ‘non-derogable minimum core’ of the right to healthcare which
cannot be compromised. It admits the difficulty in defining the ‘minimum core’ but says that at
least ‘minimum decencies of life consistent with human dignity’ must be provided.65 Second, it
holds that the ‘right to adequate healthcare flows from the sanctity of human life and dignity
that belongs to all persons.’66 This is significant because the court locates the right to healthcare
in the constitutional value of dignity and attempts to provide it content. Unlike the second cat-
egory of cases mentioned, where dignity is only invoked as a general principle, here it is seen as
a constitutional value. Finally, the court, by providing content to the constitutional value of dig-
nity, marks the shift from a conservative approach to an activist one.The court employs dignity
as part of liberty clause (Article 21) and equality clause (Article 14).67 The expansion of dignity
jurisprudence alongside equality jurisprudence holds the key to view societal disadvantages
from a more humane lens.The dignity in equality jurisprudence attributes equal moral worth
to each individual and hence provides for treatment as an equal as opposed to equal treatment. The
Constitutional Court of South Africa has immensely contributed to developing the theoretical
foundations of dignity under equality jurisprudence. There are three important attributes to
reading dignity under the equality jurisprudence: Firstly, it demands that the social or economic
disadvantage that some members of society suffer as a result of gender and historical prejudice
must be acknowledged by the adjudicating bodies. Secondly, members of groups and individu-
als68 who are marginalised must be treated differently from others in order to promote substantive
equality. That is because substantive equality demands treatment as equals and not equal treat-
ment. Finally, while offering them special treatment, urgency considerations and the consequence in
not providing the claim must be evaluated by the adjudicating authority while deciding the
case.69 The Delhi High Court referred to Article 14 (right to equality before the law) infraction
in its concluding paragraph. It held:

To conclude, today, on account of lack of Government planning, there is ‘pricing

out’ of orphan drugs for rare diseases and chronic diseases, like Gaucher.The enzyme
replacement therapy is so expensive that there is a breach of constitutional obligation
of the Government to provide medical aid on fair, reasonable, equitable and affordable
basis. By their inaction, the Central and the State Governments have violated Articles 14 and
21 of the Constitution.70

65 ibid [67].
66 ibid [65].
67 Article 14 states that ‘[t]he State shall not deny to any person equality before the law or the equal protection
of the laws within the territory of India’; see Leslie Meltzer Henry, The Jurisprudence of Dignity (University of
Pennsylvania Law Review 2011).
68 Mohd Ahmed (minor) v Union of India (n 4); see also Harksen v Lane No 1998 (1) sa 300 (cc). (Regan J dissenting:
‘such patterns of discrimination can occur where people are treated without the respect that individual human
beings deserve and particularly where treatment is determined not by the needs or circumstances of particular
individuals but by their attributes and characteristics, whether biologically or socially determined.’)
69 David Bilchitz,‘Giving Socio-Economic Rights Teeth:The Minimum Core and Its Importance’ (2002) 118 SALJ
484, 490–91.
70 Mohd Ahmed (minor) v Union of India (n 4) [85] (emphasis added).

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 Adjudication of healthcare rights in India

The Delhi High Court, without using the term in as many words, applies all three attributes of
dignity under equality jurisprudence in its judgment. It held:

Just because someone is poor, the State cannot allow him to die. In fact, Government is
bound to ensure that poor and vulnerable sections of society have access to treatment
for rare and chronic diseases, like Gaucher especially when the prognosis is good and
there is a likelihood of the patient leading to normal life.After all, health is not luxury
and should not be the sole possession of a privileged few.71

The Delhi High Court’s judgment in Ahmed’s case holds the key to opening the doors for
exploring the possibilities of situating dignity within equality jurisprudence under the Indian
Constitution. Some may view this argument as inherently limiting due to the institutional inca-
pacity of the judiciary.72 A more interventionist approach of the courts may deny the executive
the authority to design and enforce healthcare policies – something which they are most adept
to deal with.73 Further, the South African Constitutional Court applies dignity in equality juris-
prudence in engaging dialogically with the state. The Constitutional Court in South African
does not create strong remedies while applying this strand of dignity in healthcare.The Indian
Courts may adopt a middle ground, especially in view of judgments of the Allahabad High
Court in Sudhir Jaiswal v State of UP74 and Snehlata v State of UP.75 In Snehlata, a woman had a
fistula in her bladder and could not be provided proper treatment in public healthcare facilities.
While adjudicating her claim, the court asked the executive to file an affidavit explicating the
budgetary allocation on healthcare facilities in the state. The court observed that a substantial
part of the budget for the years 2016–17 and 2017–18 remained unspent.The court chastised
the state and directed it to use the budget in a more efficacious manner.The courts may explore
developing a jurisprudence of providing relief to claimants from the unspent budget as the
Allahabad High Court devised in the educational case of Sudhir Jaiswal.This may allay the con-
cerns of judicial activism amounting to tampering of budgetary layout, a concern that became
prominent after Brazil’s example came to the world stage.76 Besides this, a systemic engagement
between the court and the executive is desirable, on the lines of reasonableness model in South
Africa for strengthening institutional framework on healthcare.

71 ibid [86].
72 See Daniel Wang, Right to Healthcare Litigation in Brazil: The Problem and The Institutional Response (2015) 15
Human Rights Law Review 617–41.
73 ibid.
74 Writ No 1568 of 2017 (Allahabad High Court) (India):
[A]s regard filling of 25 percent seats in private unaided schools, the rule provided that only those stu-
dents within a vicinity of 1 km could seek admission.The rule was made in view of ensuring that no
transportation difficulties are faced by children from economically weaker section and disadvantaged
category.A son of a laborer who lived beyond 1 km neighborhood applied for admission in a prestigious
private school in Allahabad and was denied admission on the ground of 1 km rule.The court held when
the school had unfilled seats under 25 percent category then 1 km criteria should be relaxed.The access
to education is the primary goal that state is trying to achieve and it should not be dispensed with in
view of 1 km rule.
75 Snehlata v State of UP PIL No 14588 of 2009 (Allahabad High Court) (India).
76 Wang (n 72).

177
 Sushant Chandra

Conclusion
Traditionally, courts’ engagement with dignity in healthcare claims has been abysmal in cases
where a legal instrument is already in place.Then the courts have simply used dignity to provide
legitimacy to the rationality of its own reasoning and outcome.The courts, in view of their own
institutional limitation due to separation of power, have refrained from developing a rights-
based discourse to healthcare claims as part of the liberty clause. But towards the end of 1970s
courts started developing jurisprudence that enabled them to expand the liberty clause under
Article 2177 and started to engage with the constitutional value of dignity in healthcare cases. It’s
the common person’s plight that constituted the centrality of dignity jurisprudence. It is evident
from the judgments of the courts that the following features of dignity are now key:

(1) The idea of a dignified life demands a stronger obligation on the part of the state to provide
for healthcare claims.
(2) The constitutional value of a dignified life is grounded in the value of autonomy, which
accepts each individual as the creator of her own destiny due to her inner worth and attrib-
utes sacred value to her choice/s in creating a desired life.
(3) The idea of dignified life presupposes human beings as ends and not as means.
(4) The dignity jurisprudence demands a ‘social minimum’ that is compliant with the capabil-
ity approach.
(5) The dignity jurisprudence also alludes to the possibilities of situating dignity within equal-
ity jurisprudence and reflects on the institutional role it could play in mitigating material
inequality.

Despite courts’ significant engagement with dignity, and attempts to employ it as a cardinal con-
stitutional value in adjudicating socio-economic claims, there are multiple murky areas which
need further clarity.These are:

(1) Courts have simply invoked dignity in justifying the concept of ‘social minimum’ while
adjudicating healthcare claims. Courts have not engaged with drawing the contour of
‘social minimum’ and its constituents. In viewing the ‘social minimum,’ there is enormous
possibility in developing a contextual theoretical framework.
(2) Courts have sporadically referred to the relationship between autonomy and dignity.
However, the courts’ jurisprudence is unclear and smudged on the relationship between
the two. It is the Kantian idea of dignity grounded in autonomy that provides a framework
by suggesting the relationship between the two. Courts need to neatly lay down their rela-
tionship and clearly suggest their interaction.
(3) There are, again, sporadic instances where courts locate dignity within equality jurispru-
dence, but refrain from clearly sketching their relationship. This strand of dignity juris-
prudence has the potential of opening a new way of viewing dignity within the Indian
constitutional law framework and demanding more accountability on the part of the
executive.

77 Maneka Gandhi v Union of India (1978) AIR SC 597 (India).

178
 Adjudication of healthcare rights in India

References
Bilchitz, David, ‘Giving Socio-Economic Rights Teeth: The Minimum Core and Its Importance’ (2002)
118 SALJ 484, 490–91.
Foster, Charles, Human Dignity in Bioethics and Law (Hart 2011).
Kant, Immanuel, Groundwork of the Metaphysics of Morals (Cambridge University Press 1997, edited by Mary
Gregor).
Khosla, Madhav, ‘Making Social Rights Conditional – Lessons From India’ (2010) International Journal
of Constitutional Law https://academic.oup.com/icon/article/8/4/739/667097 accessed 19 October
2020.
Mosen, Michael, Dignity: It’s History and Meaning (Harvard University Press 2012).
Nussbaum, Martha, Women and Human Development:The Capabilities Approach (Cambridge University Press
2000).
Sen, Amartya, ‘Capabilities and Well-Being’ in Martha Nussbaum and Amartya Sen, The Quality of Life
(Clarendon 1993) 30–53.
Tushnet, Mark,Weak Courts, Strong Rights: Judicial Review and Social Welfare Rights in Comparative Constitutional
Law (Princeton University Press 2008).
Van Marle, K,‘“The Capabilities Approach”,“The Imaginary Domain”, and “Asymmetrical Reciprocity”:
Feminist Perspective on Equality and Justice’ (2003) 11 Feminist Legal Studies 255–78 and 272–73.
Wang, Daniel, ‘Right to Healthcare Litigation in Brazil: The Problem and The Institutional Response’
(2015) 15 Human Rights Law Review 617–41.

179
 11
UNIVERSAL HEALTH
COVERAGE AND THE RIGHT
TO HEALTH IN NIGERIA
Cheluchi Onyemelukwe

Introduction
Nigeria is Africa’s most populous nation with about 200 million people. It has considerable
influence on the continent. However, healthcare indices in the country are poor.The country
has some of the highest rates of human immunodeficiency virus (HIV), with a prevalence rate
of 1.5% of persons between the ages of 15 and 64.1 Maternal mortality rates are very high: 522
per 100,000 live births.2 Nigeria also experiences a significant number of infectious diseases,
some of which yield epidemics annually. Infant mortality as a result of malnutrition is also high
and many children die before their fifth birthday from childhood diseases. Nigeria has the high-
est estimated burden of childhood pneumococcal diseases in Africa3 and the second highest in
the world.4 Non-communicable diseases are also becoming a cause for concern, with increasing
rates of cancers, hypertension, and diabetes, in part due to lifestyle changes. Limited access to
mental health services as well as its associated stigma continue to be a significant challenge, while
many living with a disability have little access to essential services.
These statistics are made grimmer by the limited number of persons who have access to
healthcare services and high out-of-pocket expenses for healthcare,5 with some estimates plac-
ing them at 90%.6 Disparities in access exist between rural and urban areas, with rural areas

1 Federal Ministry of Health and National Agency for AIDS Control (NACA), ‘Nigeria HIV/AIDS Indicator
and Impact Survey’ (2019) www.naiis.ng/resource/factsheet/NAIIS%20PA%20NATIONAL%20FACTSHEET
%20FINAL.pdf accessed 14 October 2020.
2 National Population Commission, Nigeria and ICF, Nigeria Demographic and Health Survey (2018) https://dhsprog
ram.com/pubs/pdf/FR359/FR359.pdf accessed 14 October 2020.
3 IMO Adetifa,AL Adamu,A Karani, M Waithaka, KA Odeyemi, CAN Okoromah, MM Bello, IS Abubakar,V Inem,
and JAG Scott,‘Nasopharyngeal Pneumococcal Carriage in Nigeria:A Two-Site, Population-Based Survey’ (2018)
8(1) Scientific Reports 3509.
4 Agnese Juliano et al.,‘The Burden and Risks of Pediatric Pneumonia in Nigeria:A Desk-Based Review of Existing
Literature and Data’ (2020) 55(1) Pediatric Pulmonology S10–S21.
5 BS Aregbeshola and SM Khan, ‘Out-of-Pocket Payments, Catastrophic Health Expenditure and Poverty among
Households in Nigeria 2010’ (2018) 7(9) International Journal of Health and Policy Management 798–806.
6 CS-SUNN and PACFAH,‘Budgeting for Health and Nutrition in Nigeria’ https://ptcij.org/wp-content/upload
s/2015/12/Budgeting-for-Health-and-Nutrition-in-Nigeria.pdf accessed 14 October 2020.

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 Right to health in Nigeria

being where more people live having fewer healthcare facilities, poor patient safety,7 a signifi-
cant amount of brain drain of healthcare professionals and the resulting low patient-to-health-
professional ratio (1 to about 3000),8 poor and dilapidating infrastructure, and a considerable
degree of health illiteracy. Despite these challenges, budgetary allocations to healthcare hover
around 5% or less of the annual budget,9 well below the commitment of the country in the
Abuja Declaration of 2001.Accountability is, therefore, a key issue.
To address these issues, the concept of universal health coverage (UHC) has become increas-
ingly suggested as a solution in Nigeria.This movement follows the drive in international policy
circles towards the concept of UHC, championed by the World Health Organization and other
international development organisations.This concept, defined briefly as ensuring that all peo-
ple obtain essential health services they need without suffering financial hardship,10 has found
currency not only in Nigeria but in other African countries and countries around the world.
While the concept appears to hold promise for improving access to basic, quality healthcare
services, what are the legal foundations for UHC? In this regard, scholars have analysed the close
relationship between UHC and the right to health, as articulated in the International Covenant
on Economic, Social and Cultural Rights. The relationship between universal health coverage
and the right to health has also been explored by the WHO, noting that the right to health is
based on the WHO Constitution of 1948.11
More relevant for the purpose of this chapter: what rights do Nigerians have to UHC? The
Constitution of the Federal Republic of Nigeria (1999), like the constitutions that preceded
it, does not specifically provide for the right to health as conceived in international human
rights instruments.These include, in particular, the International Covenant on Economic, Social
and Cultural Rights,12 and also regional instruments such as the African Charter on Human
and Peoples’ Rights.13 Yet the right to health is not specifically articulated in the Constitution.
Instead, it provides for a non-justiciable duty to ensure occupational safety and medical and
health services for all.14 Much has been written on the justiciability of the right to health
and other socio-economic rights in Nigeria,15 which seemingly makes the legal foundations of
UHC somewhat shaky.
However, this chapter examines the universal health coverage and the right to health as
currently articulated in Nigeria’s body of legislation. It argues that, while the right to health is
non-justiciable in its purest form, in the years since the Constitution came into force, there has
been a steady, though slow, movement towards enshrining the right to health and providing a

7 See Cheluchi Onyemelukwe,‘Patient Safety in Nigeria:An Emergent Concept’ in John Tingle, Clayton Ó Neill,
and Morgan Shimwell (eds), Global Patient Safety: Law, Policy and Practice (Routledge 2018).
8 FMOH, 2018 National Health Work Force Profile, 2019.
9 Aworinde Tobi,‘2020 Budget: Health, Education in Familiar Territory of Neglect’ Punch Newspaper (20 October
2019) https://punchng.com/2020-budget-health-education-in-familiar-territory-of-neglect/ accessed 14
October 2020.
10 WHO, ‘What Is Universal Health Coverage?’ www.who.int/news-room/q-a-detail/what-is-universal-health-co
verage accessed 14 October 2020.
11 ibid.
12 Cheluchi Onyemelukwe,‘Access to Anti-Retroviral Drugs as a Component of the Right to Health: Examining
the Application of the Right in Nigerian Jurisprudence’ (2008) 7 African Human Rights Law Journal 446.
13 ibid.
14 Constitution of Nigeria, 1999, section 17(3)(d)(e).
15 See, for example, Onyemelukwe, ‘Access to Anti-Retroviral Drugs’ (n 12) 446; and Nnamuchi Obiajulu,
‘Rethinking Justiciability of Socioeconomic Rights in Nigeria: A Critique of the Dominant Position’ (20
December 2012) https://ssrn.com/abstract=2191914 accessed 14 October 2020.

181
 Cheluchi Onyemelukwe

legal foundation for UHC in other pieces of legislation. It is further contended that these pieces
of legislation can be employed to ensure or give teeth to the laudable idea of universal health
coverage in Nigeria.

Universal health coverage and the right to health

Universal health coverage is not a new concept. It may be argued to have begun long before the
20th century. From the 19th century, different countries have worked to establish systems that
aim to provide universal health coverage.16 These attempts evolved from the Otto von Bismarck
national social health insurance scheme in Germany and then to the 20th-century countries,
with national health systems in the United Kingdom and Canada. Various ideas have drawn
from the idea of UHC such as the primary health care concept enshrined in the 1978 Alma Ata
Declaration and later on in several World Health Assembly declarations.17 However, the concept
has recently come into more prominence and is now being championed by the most important
international development organisations, including the WHO and the World Bank, encouraging
less wealthy and resource-constrained countries to adopt it as well. Thus in 2012, the United
Nations adopted a resolution which recognised amongst other things, ‘the responsibility of
Governments to urgently and significantly scale up efforts to accelerate the transition towards
universal access to affordable and quality health-care services’ and acknowledged that

universal health coverage implies that all people have access, without discrimination, to
nationally determined sets of the needed promotive, preventive, curative and rehabili-
tative basic health services and essential, safe, affordable, effective and quality medicines,
while ensuring that the use of these services does not expose the users to financial
hardship, with a special emphasis on the poor, vulnerable and marginalized segments
of the population.18

Three years later, in 2015, the concept was also adopted in the Sustainable Development Goals
(SDGs), a set of programmatic goals set by the United Nations for the achievement of a sustain-
able future and expected to be achieved by all countries by 2030.19 SDG 3 requires the achieve-
ment of the goal of ensuring healthy lives and promoting well-being for all at all ages and within
that goal the goal of achieving universal health coverage.20 On 12 December 2017, the UN by
a resolution adopted by the General Assembly declared 12 December to be Universal Health
Coverage Day.21 Further, a high-level meeting on universal health coverage was held on 23

16 Eswan Swan, ‘Universal Health Coverage: An Illustrated History’ Financial Times (19 September 2018) www.ft
.com/content/34084366-dadb-11e9-8f9b-77216ebe1f17 accessed 14 October 2020.
17 Gilbert A Abiiro and Manuela De Allegri, ‘Universal Health Coverage from Multiple Perspectives: A Synthesis
of Conceptual Literature and Global Debates’ (2015) 17 BMC International Health and Human Rights https:/
/bmcinthealthhumrights.biomedcentral.com/articles/10.1186/s12914-015-0056-9 accessed 14 October 2020.
18 UNGA 67th Session on Global Health and Foreign Policy, adopted 12 December 2012.
19 See www.un.org/sustainabledevelopment/sustainable-development-goals/; T Bärnighausen and R Sauerborn,
‘One Hundred and Eighteen Years of the German Health Insurance System:Are There Any Lessons for Middle-
and Low-Income Countries?’ (2002) 54 Social Science & Medicine 1559–87.
20 SDG 3.8.
21 UN, ‘International Universal Health Coverage Day, 12 December’ www.un.org/en/observances/universal-heal
th-coverage-day accessed 14 October 2020.

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 Right to health in Nigeria

September 2019, where political leaders from UN member states declared their commitment to
achieving universal health coverage.22
Universal health coverage has been defined as ‘all people and communities, having access to
the basic health services they need, of sufficient quality to be effective, while also ensuring that
the use of these services does not expose the user to financial hardship.’23 In essence, the com-
ponents of UHC include improved access to needed, effective services while protecting users
of healthcare systems from financial ruin/hardship. The services contemplated under universal
health coverage are basic, essential, and comprehensive health services – promotive, preventive,
curative, rehabilitative, and palliative. It also includes the key concepts of ‘equity, shared respon-
sibility, and quality healthcare delivery irrespective of ability to pay.’24 According to the WHO,
objectives of UHC are thus threefold:

• equity in access to health services – everyone who needs services should get them, not only
those who can pay for them;
• the quality of health services should be good enough to improve the health of those receiv-
ing services; and
• people should be protected against financial risk, ensuring that the cost of using services
does not put people at risk of financial harm.25

The key questions that UHC seeks to answer are:Who is covered? What services are covered?
What is the level of quality of these services? How are the services paid for? In this regard, the
concept envisages that health systems should be strong, efficient, well-organised and managed in
order to meet the health needs of all persons in line with their priorities.Thus, all persons in a
country are covered at least to some degree. In terms of coverage of services, the health system
is not only expected to be curative, it should also be preventive, providing room for the preven-
tion of common illnesses, including infectious diseases. It should also be promotive, promoting
good health practices, providing information on how people can stay healthy, and incentives
and encouragement to adopt healthy practices and lifestyles. It should also be rehabilitative, for
example providing support for substance abuse management. Importantly, it must address cost.
Coverage must not depend on who can afford to pay. In the context of Nigeria, this is a crucial
matter. In a country where the majority live below the poverty line, access to health care is often
dependent on affordability, that is whether one can pay for health services. Cost also includes
delivering a system of financing that provides for these needs to be met, including the costs of
health providers; essential medicines; and technologies, research, and information systems. In the
context of UHC, this is an aspect that must be addressed through appropriate health financ-
ing arrangements. Quality of services must also be addressed: this means that there needs to
be measures in place to ensure qualified persons, good equipment, quality essential medicines,
high-quality information, addressing of issues such as waiting times, etc. Quality is crucial in

22 IISD, ‘UN High-Level Meeting Adopts Historic Declaration on Universal Health Coverage’ (24 September
2019) https://sdg.iisd.org/news/un-high-level-meeting-adopts-historic-declaration-on-universal-health-cove
rage/ accessed 14 October 2020.
23 WHO, ‘Universal Health Coverage’ www.who.int/healthsystems/universal_health_coverage/en/ accessed 14
October 2020.
24 WHO,‘African Union Universal Health Coverage in Africa: From Concept to Action’ (WHO 2014) 1–7 www.w
ho.int/health_financing/policy-framework/auc-who-2014-doc1-en.pdf accessed 14 October 2020.
25 WHO, ‘Health Financing’ www.who.int/health_financing/universal_coverage_definition/en/ accessed 14
October 2020.

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 Cheluchi Onyemelukwe

part because it affects health outcomes and determines whether health services are of value for
the money, but also because it has an impact on trust, perception, and ultimately uptake of the
services.
As important as universal health coverage might be, as noted elsewhere, there are domes-
tic political debates,26 including those concerning financing mechanisms, which must be held.
These debates and ones concerning legal issues about the necessary legal steps to entrench UHC
will offer an opportunity to those involved in healthcare provision and policy-making to engage
with this pivotal issue. As the WHO notes, the law is an important enabler of UHC because it
can help guarantee the goals of UHC, namely equity, quality, health security, and financial risk
protection; establish the legal mandate for access to health services for all; establish and enforce
fair rules and incentives to ensure that for actors towards achieving UHC; and provide one
means for realising UHC policies and programmes and supporting efforts to strengthen health
systemss.27 In addition, it provides sustainability that is likely to ensure that policies outlast gov-
ernments and become institutionalised.
With these in mind, I turn now to a key question: what is the legal foundation for universal
health coverage? How can governments be held legally accountable for providing universal
health coverage? These questions can be answered in a domestic context by examining the
domestic legal frameworks in place and assessing how well they meet the imperative of an
entitlement to universal health coverage and its expected outcomes.With respect to this enti-
tlement, a rights-based analysis offers a good basis for assessment of these laws. From a human
rights perspective, these questions are often answered by looking at the connections and link-
ages between the right to health and UHC. Many scholars have attempted to draw these link-
ages, as have international organisations, making reference to key international instruments.The
Universal Declaration of Human Rights, for example, declares that ‘[e]veryone has the right to a
standard of living adequate for the health and well-being of himself and his family.’28 This provi-
sion clearly resonates in our understanding of UHC.The right to health is also acknowledged
in the International Convention on the Elimination of All Forms of Racial Discrimination of
1965,29 the Convention on the Elimination of All Forms of Discrimination against Women of
1979,30 Convention on the Rights of the Child of 1989,31 the Convention on the Rights of
Persons Living with Disabilities,32 and the International Convention on Migrant Workers.33 At
a regional level, the African Charter on Human and Peoples’ Rights also provides for the right
to health, declaring:‘Every individual shall have the right to the best attainable state of physical
and mental health.’34More recently, one of the key issues developed for deliberations prior to the
UN High-Level Meeting on Universal Health Coverage in 2019 as an ‘Ask’ was the need to
regulate and legislate UHC, that is to

26 Jesse B Bump,‘The Long Road to Universal Health Coverage: Historical Analysis of Early Decisions in Germany,
the United Kingdom, and the United States’ (2015) 1(1) Health Systems and Reform 28.
27 WHO,‘Creating Enabling Legal Environments for Universal Health Coverage’ www.who.int/health-laws/univer
sal-health-coverage/en/ accessed 14 October 2020.
28 Universal Declaration of Human Rights,Article 25.
29 Article 5(e)(iv).
30 Articles 11.1(f) and 12 of the Convention on the Elimination of All Forms of Discrimination against Women of
1979.
31 Article 24 of the Convention on the Rights of the Child of 1989.
32 Article 25 of the Convention on the Rights of Persons Living with Disabilities.
33 Article 28.
34 Article 16.

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Create a strong, enabling regulatory and legal environment responsive to people’s

needs. UHC requires a sound legal and regulatory framework and institutional capac-
ity to ensure the rights of people and meet their needs. Governments are the pri-
mary duty bearer under the International Covenant on Economic, Social and Cultural
Rights, even in cases when they rely on private providers.35

The International Covenant on Economic, Social and Cultural Rights (ICESCR) provides for
a number of socio-economic rights, including the right to health. It states: ‘The States Parties
recognize the right of everyone to the enjoyment of the highest attainable standard of physical
and mental health.’36 General Comment Number 1437 has helped expatiate on the norma-
tive contents of right to health, establishing the minimum core obligations of States. General
Comments are considered soft rather than hard law and are not legally binding. However,
they are highly persuasive and generally receive compliance in international law.38 The General
Comment notes that ‘The realization of the right to health may be pursued through numerous,
complementary approaches, such as the formulation of health policies, or the implementation
of health programmes developed by the World Health Organization (WHO), or the adoption
of specific legal instruments.’39 In this regard, UHC may be regarded as one approach to realis-
ing the right to health, alongside the adoption of legal instruments to strengthen that approach.
The General Comment emphasises the interdependency of human rights and that other rights
such as the rights to food, housing, work, education, human dignity, life, non-discrimination,
equality, the prohibition against torture, privacy, and access to information, and the freedoms of
association, assembly, and movement.40 Beyond that, the General Comment observes that while
the right to health comes in various forms, in all its forms it comprises the following elements:

(a) Availability – This includes functioning public health and healthcare facilities, goods, and
services, as well as programmes, have to be available in sufficient quantity within the coun-
try along with the determinants of health including water that is safe and suitable for drink-
ing and adequate sanitation facilities; hospitals, clinics, and other health-related buildings;
trained medical and professional personnel receiving domestically competitive salaries; and
essential drugs, as defined by the WHO Action Programme on Essential Drugs.
(b) Accessibility – This requires that health facilities, goods, and services have to be accessible
to everyone without discrimination within the country.This has four intersecting aspects,
including non-discrimination, physical accessibility, and affordability (in which equity is
embedded and in which poor households are not to be disproportionately burdened with
healthcare costs). Each of these is linked to the requirements of UHC as discussed earlier.

35 UHC2030, ‘Key Asks from the UHC Movement UN High-Level Meeting on Universal Health Coverage’
www.uhc2030.org/fileadmin/uploads/uhc2030/Documents/UN_HLM/UHC_Key_Asks_final.pdf> accessed
14 October 2020.
36 CESCR,Article 12.
37 Committee on Economic, Social and Cultural Rights, General Comment No 14:The Right to the Highest Attainable
Standard of Health (Twenty-Second Session Geneva, 25 April–12 May 2000).
38 Lottie Lane, ‘The Horizontal Effect of International Human Rights Law in Practice’ (2018) 5(1) European
Journal of Comparative Law and Governance 5–88.
39 Article 1 of the General Comment.
40 Article 3 of the General Comment.

185
 Cheluchi Onyemelukwe

(c) Acceptability – The right to health requires that all health facilities, goods, and services shall
respect medical ethics and must be culturally appropriate, gender-sensitive, and sensitive to
life-cycle requirements, respect confidentiality, and improve the health status.
(d) Quality – The right also requires that health facilities, goods, and services must also be
scientifically and medically appropriate and of good quality. This necessarily requires that
there be sufficient numbers of the key elements of healthcare: skilled medical personnel,
scientifically approved and unexpired drugs and hospital equipment, safe and potable water,
and adequate sanitation.

The General Comment also addresses the need for rehabilitative care, in particular for older
adults, and the right to a framework for preventing infectious diseases. Countries are required
to ensure the minimum levels of the right as enunciated in the core normative content. The
right includes both positive and negative elements, requiring states to undertake active steps to
provide health facilities and access, while refraining from discrimination, for example.
From the preceding discourse, the key elements of UHC, such as affordability, financial risk
protection, and quality, are embedded within the right to health, even though the right oper-
ates within the parameters of progressive realisation, which allows room for a country, including
resource-constrained countries like Nigeria, to work towards realising, protecting, and fulfilling
the right to health.
In essence, the right to health provides legal foundation for the right of all to have access
to available, accessible, acceptable, qualitative health care, and requires the existence of a legal
framework that assures such care. However, the right to health with the core requirements of
progressive realisation, non-discrimination, the requirement to meet minimum core obligations,
and its clear commitment to addressing the social determinants of health as well as healthcare
services, and the requirement not only to rely on a country’s resources but also on international
cooperation and assistance, is arguably broader than the focus on UHC. This is an argument
worth exploring and which has been considered to some degree in the literature.41 It is, however,
not the focus of this chapter. This chapter focuses instead on the grounds upon which UHC
may claim a legal foundation which will entitle citizens to make a claim on the government.

Universal health coverage and the justiciability of the right to health in Nigeria
UHC has become a major imperative in Nigeria, especially in light of its poor health indices
as cited in the Introduction. In 2014, a Presidential Summit on Universal Health Coverage
took place in Abuja.This heralded an official embrace of the concept in Nigeria, with the key
points highlighted in a Presidential Summit on Universal Health Coverage Declaration.42 The

41 See, for example, Gorik Ooms et al., ‘Is Universal Health Coverage the Practical Expression of the Right to
Health Care?’ (2014) BMC International Health and Human Rights; see also Lisa Forman, ‘What Could a
Strengthened Right to Health Bring to the Post-2015 Health Development Agenda?: Interrogating the Role of
the Minimum Core Concept in Advancing Essential Global Health Needs’ (2013) 48 BMC International Health
and Human Rights 13 https://bmcinthealthhumrights.biomedcentral.com/articles/10.1186/1472-698X-14-3
accessed 14 October 2020; Gilbert A Abiiro and Manuela De Allegri,‘Universal Health Coverage from Multiple
Perspectives: A Synthesis of Conceptual Literature and Global Debates’ (2015) 17 BMC International Health
and Human Rights https://bmcinthealthhumrights.biomedcentral.com/articles/10.1186/s12914-015-0056-9
accessed 14 October 2020.
42 ‘Presidential Summit on Universal Health Coverage Declaration (Abuja, 10 March, 2014)’ www.msh.org/sit
es/msh.org/files/presidential_summit_declaration_on_universal_health_coverage_in_nigeria.pdf accessed 14
October 2020.

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Declaration affirmed that ‘health is a fundamental human right’ and that the government has
the responsibility to assure the health of its people.43 This is particularly important because, as
discussed later, the Nigerian Constitution does not clearly recognise the right to health as a
fundamental right.The Declaration also recognised that UHC ‘holds the key to unlocking the
door for equitable, qualitative and universally accessible healthcare for all Nigerians without suf-
fering financial hardship.’44 The Declaration also recognised the challenges that hinder UHC in
Nigeria, namely ‘sub-optimal health system characterized by budgetary constraints, inadequate
financial protection for the poor, shortage and mal-distribution of human resources for health,
uneven quality of health care services, challenges in the provision of health commodities, poor
coordination, and weak referral system and the uneven utilization of health services.’45 It, then,
listed several steps that were to be taken towards achieving UHC. Several of these included
health financing steps but also steps for the purpose of managing quality:

• Institutionalising mandatory health insurance in Nigeria, with contributions from all

income earners (formal and informal) and special funds to cover the poor;
• Increasing budgetary allocation to health at federal, state, and local government with a pro-
portion earmarked for UHC priority interventions;
• Providing alternative, innovative, and sustainable sources of funding for UHC;
• Pooling these funds into a Universal Health Coverage Fund at all levels;
• Strengthening and expanding financial risk protection mechanisms for the poor and vul-
nerable groups as part of the broader social protection efforts in the country;
• Defining a standard benefit package of essential health services that address priority health-
care needs of Nigerians;
• Providing the standard benefit package through ensuring adequate physical infrastructure,
skilled human resource, medicines and other life-saving commodities, and equitable distri-
bution of same
• Providing policy and regulatory instruments for the institutionalisation of systems and
mechanisms that ensure quality of care and satisfaction for consumers of healthcare services;
• Exploring the establishment of an Independent Health Quality Commission to ensure
standards and compliance;
• Building an organised referral system that guarantees each citizen access to functional pri-
mary health care facility, which shall be the first point of contact in the national health
system.46

While the Declaration is not a legal document and does not carry any weight in law, it demon-
strates government understanding of the existing challenges and the need to take steps towards
UHC in Nigeria. Since the Declaration, the government has taken several steps, including
enactment of the National Health Act and the establishment of state health insurance schemes.
The National Health Policy 2016 reiterates the government’s commitment towards universal
health coverage by declaring the vision of the policy, an umbrella document which provides the

43 Article 1 of the Declaration.

44 Article 3 of the Declaration.
45 Article 6 of the Declaration.
46 Articles 10 to 19 of the Declaration.

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 Cheluchi Onyemelukwe

overall government policy on the wide range of health issues and which is expected to last ten
years,‘Universal Health Coverage (UHC) for all Nigerians.’47
Clearly, therefore, the Nigerian government has declared its commitment to the ideals of
UHC. However, the situation of health access and quality in the country makes it plain that it is
very far from achieving the objectives of UHC – limiting financial hardship in accessing basic
healthcare services and provision of services of good quality, and by so doing addressing issues
of equity, service provision, etc. The question then may be whether there is a supportive legal
framework for UHC which may be drawn upon to enforce this practice. For this purpose, I next
consider the right of health and its justiciability in a Nigerian context.
The right to health is not one of the fundamental rights provided in Chapter Four of the
Constitution, although other rights provided therein have significance for the right to health
such as the right to life, the right to dignity and freedom from degrading and cruel treatment,
right to freedom of religion and conscience, and the right to privacy. Instead the closest idea
to a right to health is found in Chapter Two of the Constitution. Chapter Two provides for
the Fundamental Objectives and Directive Principles of State Policy. Section 17(3)(c) and (d)
provides for the obligation to provide for occupational health and safety and medical facilities:
The State shall direct its policy towards ensuring that:
(c) the health, safety and welfare of all persons in employment are safeguarded and
not endangered or abused;
(d) there are adequate medical and health facilities for all persons.

However, this provision, like other provisions in Chapter Two are unenforceable as constitu-
tional provisions. In this regard, section 6(6)(c) of the Constitution ousts the jurisdiction of
the courts to enforce the obligations and directive principles set out in Chapter Two of the
Constitution, stating that the judicial powers vested in the judiciary48

shall not except as otherwise provided by this Constitution, extend to any issue or
question as to whether any act of omission by any authority or person or as to whether
any law or any judicial decision is in conformity with the Fundamental Objectives and
Directive Principles of State Policy set out in Chapter II of this Constitution.49

The courts have adopted a restrictive interpretation of section 6(6)(c) of the Constitution in
several cases.50 In this regard, a consideration of section 13 of the Constitution may be helpful:

It shall be the duty and responsibility of all organs of government, and of all authorities
and persons, exercising legislative, executive or judicial powers, to conform to, observe
and apply the provisions of this Chapter of this Constitution.51

Yet this, by itself, as apparent in early decisions, does not override section 6(6)(c) which ousts
or removes the jurisdiction of the courts to enforce.52 On the basis of this, many scholars have

47 Federal Ministry of Health, National Health Policy, 2016.

48 Constitution of the Republic of Nigeria,1999, section 6.
49 Constitution of the Federal Republic of Nigeria, 1999, section 6 (6)(c).
50 See, for example, Archbishop Olubunmi Okogie and others v Attorney General of Lagos (1981) 2 NCLR 331; Adeyinka
Badejoh and others v Federal Ministry of Education and others.
51 Constitution of the Federal Republic of Nigeria, 1999, section 13.
52 ibid section 6.

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argued that the right to health is not justiciable in Nigeria and proposed ways of ensuring
that this right becomes justiciable, including amending the Constitution, adopting the Indian
approach to linking fundamental objectives to fundamental rights (for example, there can be no
right to life without a right to basic health care), investigating whether the enforceable funda-
mental rights have been violated by making reference to the fundamental objectives.53 However,
a close look at the opening phrase, the ousting clause, of section 6(6)(c), ‘except as otherwise
provided by this Constitution’ suggests that the matter is not as straightforward as it would
appear from the early decisions.When read in conjunction with section 13, as quoted earlier, it
is arguable that the ouster ought not to be effective.
Some of these arguments appear to have had an impact on other socio-economic rights. In
Jonah Gbemre v Shell Petroleum Development Company Nigeria Limited and others,54 for instance, a
case in which the plaintiff challenged the flaring of gas and the resulting destruction of the envi-
ronment as a violation of their right to life, the court held that the right to life included the right
to a clean, healthy environment. In reaching this decision, the court relied on the provisions in
the African Charter on Human and Peoples’ Rights, which has been domesticated and is now
municipal law.This suggests a progressive movement by the courts in Nigeria to a recognition
of socio-economic rights.
However, another way to potentially ensure the enforceability of the right to health, along-
side other socio-economic and cultural rights, is the enactment of standalone legislation. In
this regard, the courts in Nigeria have now held on the basis of section 13 that while enforce-
ability in the courts may, strictly speaking, not be permitted under the Constitution, the same
Constitution requires the executive arm and other arms of government to undertake the appli-
cation of Chapter Two, including the right to medical services, making it an obligation, albeit
an unenforceable one.Thus, in the case of A G Ondo State v A G Federation, the Supreme Court
declared that non-compliance with the provisions of Chapter Two would amount to a failure
of duty and responsibility, though unenforceable by legal process. However, the Court went on
to declare that ‘the Directive Principles (or some of them) can be made justiciable by legislation.’55
Further, Justice Uwaifo in that case stated aptly:

We do not need to seek uncertain ways of giving effect to the Directive Principles in
Chapter II of our Constitution. The Constitution itself has placed the entire chapter
II under the Exclusive Legislative list. By this, it simply means that all the Directive
Principles need not remain mere or pious declarations. It is for the Executive and the
National Assembly, working together, to give expression to anyone of them through
appropriate enactment … the National Assembly can well legislate if in its wisdom it con-
siders it necessary.56

In other words, the government can choose to ensure enforceability by passing legislation to
give effect to the provisions of Chapter Two, in which case that legislation can be enforced by
the courts.This includes legislation which provides for universal health coverage or for the right

53 Onyemelukwe, ‘Access to Anti-Retroviral Drugs’ (n 12); C Obiagwu and CA Odinkalu, ‘Nigeria: Combating
Legacies of Colonialism and Militarism’ in AA An-Na’im, Human Rights under African Constitutions: Realising the
Promise for Ourselves (2003) 226; Edoba Omoregie and Daud Momodu, ‘Justifying the Right to Health Care in
Nigeria: Some Comparative Lessons’ (2014) 12 Nigerian Juridical Review 13.
54 Jonah Gbemre v Shell Petroleum Development Company Nigeria Limited and ors Suit No: FHC /B/SC/53/05.
55 A G Ondo State v A G Federation (2002) 9 NWLR (Pt. 772) 222 (SC) per Uwaifo, JSC at p. 382 paras A–D.
56 ibid 382 paras F–H (emphasis added).

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 Cheluchi Onyemelukwe

to health, including the right to medical services as specified in the Constitution.This approach
has been adopted by the Nigerian courts in recent cases such as Legal Defence and Assistance
Project (LEDAP) GTE & LTD v Federal Ministry of Education & Anor57 where the right to univer-
sal basic education, as provided under the Compulsory Universal Basic Education Act, was held
to be enforceable by the court under that Act.
As I have argued elsewhere, the right to medical facilities as provided under the Constitution
is narrower than the right to health. It does not make provision for the underlying deter-
minants of health or for the normative content of the right to health as identified in the
General Comment.58 Enacting legislation can help address those other missing aspects outside
the Constitution while rendering them justiciable so that an aggrieved Nigerian who believes
their rights to be violated can seek redress for such violation under the legislation.
At this time, the right to health has been implemented, albeit to a limited degree in various
pieces of legislation. These pieces of law indicate that universal health coverage is not merely
a policy issue but a matter in which the law can be used for the purposes of accountability. I
examine these pieces of legislation in the subsequent sections.

Recent legal developments with implications for the

right to health and universal health coverage
The African Charter on Human and Peoples’ Rights
The African Charter on Human and Peoples’ Rights (hereafter the African Charter) is a regional
human rights instrument established by the Organisation of African Unity, now the African
Union, and adopted in 1981 and came into force on 21 October 1986, for the purpose of pro-
moting and protecting human rights and basic freedoms in Africa.
The Constitution of Nigeria entrenches a dualist system which requires that international
law be domesticated before it is enforceable in Nigerian courts.According to the Constitution:
‘No treaty between the federation and any other country shall have the force of law except
to the extent to which any such treaty has been enacted into law by the National Assembly.’59
Nigeria has ratified and domesticated the African Charter, the first country in Africa to do so.60
Thus the African Charter on Human and Peoples’ Rights (Ratification and Enforcement) Act
198361 is now municipal law enforceable before Nigerian courts.
The African Charter provides for a number of socio-economic rights, including the right to
health.Article 16 states:

(1) Every individual shall have the right to enjoy the best attainable state of physical and mental
health.
(2) State Parties to the present Charter shall take the necessary measures to protect the health
of their people and to ensure that they receive medical attention when they are sick.

57 Legal Defence and Assistance Project (LEDAP) GTE & LTD v Federal Ministry of Education & Anor (2017w), Suit
No FHC/ABJ/CS/978/15, https://nigerialii.org/ng/judgment/high-court-fct-nigeria/2018/2 accessed 14
October 2020.
58 Onyemelukwe,‘Access to Anti-Retroviral Drugs’ (n 12) 446.
59 Constitution of the Federal Republic of Nigeria, 1999, section 12.
60 African Commission on Human and Peoples’ Rights,‘State Parties to the African Charter’ www.achpr.org/statep
artiestotheafricancharter accessed 14 October 2020.
61 African Charter on Human and Peoples’ Rights (Ratification and Enforcement) Act, 1983 Cap A10 Laws of the
Federation of Nigeria, 2004.

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 Right to health in Nigeria

The first part of the right to health, underscoring all persons’ rights to the best attainable state
of physical and mental health, are reminiscent of the provisions in other instruments, includ-
ing the WHO Constitution, the Convention on the Rights of the Child, and the ICESCR.
The normative content is set out in the Principles and Guidelines on the Implementation of
Economic, Social and Cultural Rights in the African Charter on Human and Peoples’ Rights
articulated by the African Commission on Human and Peoples’ Rights (hereafter Principles
and Guidelines).62 Like General Comment No 14 on the right to health in the ICESCR, the
Principles and Guidelines are soft law, which, however, is of considerable significance in under-
standing the rights articulated in the African Charter.They define the scope of the right and the
key principles that undergird the right, including minimum core obligations, the principle of
non-discrimination, obligations to take immediate steps, and presumption against retrogressive
steps as well as progressive realisation. Progressive realisation is not specifically provided in the
African Charter. However, while recognising this, the Principles and Guidelines also state that
the concept is well recognised in international law and applicable in the context of the African
Charter to require states to continue to work towards the realisation of the rights provided
therein through a reasonable and measurable plan.63 With this recognition, it seems fairly clear
that the General Comment on the ICESCR has utility in defining the content of the right to
health as articulated in the African Charter.
Importantly, the Principles and Guidelines emphasise the domestic enforceability of socio-
economic rights including the right to health, providing:

All rights recognised in the African Charter must be made effective under national
legal systems. Violation of economic, social and cultural rights protected under the
African Charter must entitle affected individuals and peoples to effective remedies and
redress under domestic law.A rigid classification of economic, social and cultural rights
which puts them, by definition, beyond the reach of the courts would be incompatible
with the principle that human rights are indivisible and interdependent. International
remedies are ultimately only supplementary to effective national remedies.64

As stated earlier, Nigeria has adopted the African Charter as domestic law, making it directly
enforceable in Nigerian law.What this means is that the right to health is, or at least ought to
be, enforceable in Nigerian courts. The Principles and Guidelines also require that national
plans, policies, indicators, timeframes, and benchmarks should be articulated, with emphasis on
vulnerable persons and groups, and be employed for measuring the progress of states towards the
actualisation of socio-economic rights.
The contents of the right to health are set out in the Principles and Guidelines.The Principles
and Guidelines note that the right is an inclusive right encompassing both healthcare and the
underlying determinants of health.Amongst other things, it requires an effective and integrated
health system, responsive to national and local priorities, and accessible to all; the determinants
of health including access to safe and potable water and adequate sanitation, an adequate supply
of safe food, nutrition, housing, and healthy occupational and environmental conditions; and

62 African Commission on Human and Peoples’ Rights, ‘Guidelines on the Implementation of Economic, Social
and Cultural Rights in the African Charter on Human and Peoples’ Rights’ www.achpr.org/public/Document/
file/English/achpr_instr_guide_draft_esc_rights_eng.pdf accessed 14 October 2020.
63 Principles and Guidelines, sections 13 and 14.
64 ibid section 22.

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 Cheluchi Onyemelukwe

effective access to health-related education and information, including on sexual and repro-
ductive health freedoms such as control over one’s own body and health and freedom from
interference including non-consensual medical treatment, experimentation, forced sterilisation,
and inhuman and degrading treatment.The minimum core obligations include access to health
facilities, goods, and services on a non-discriminatory basis, especially for vulnerable or margin-
alised groups; provision of essential drugs to all those who need them, as periodically defined
under the WHO Action Programme on Essential Drugs, and particularly anti-retroviral drugs;
universal immunisation against major infectious diseases; measures to prevent, treat, and control
epidemic and endemic diseases; and education and access to information concerning the main
health problems in the community, including methods of preventing and controlling them. It
also requires the adoption of national policies that provide a holistic approach to individuals’
healthcare needs; and comprehensive strategy and action plans that address basic and primary
health care, and which provide specific measures for the coverage of all age groups including
persons in marginalised areas whether urban or rural. It also requires that governments set a
target of allocating at least 15% of their annual budget to the improvement of the health sec-
tor.This echoes the Abuja Declaration which made a similar requirement.65 Action plans must
ensure access to emergency treatment, that is, adequate medical care and treatment in the event
of sickness or accident. Amongst other things, it also emphasises gender issues, including the
need for a gender perspective in developing health policies and plans, and criminalisation of
harmful traditional practices such as female genital mutilation.66
There are clear similarities with the General Comment, but also a definite effort to address
key issues that are peculiar to many African countries and to be as practical as possible, hence the
emphasis on policies, action plans, and measurable targets; and the focus on malaria, tuberculosis,
and HIV, as well as the focus on the marginalised and vulnerable.
In terms of UHC, the provisions of the Principles and Guidelines to a significant degree
overlap with the components of availability and affordability, with the focus on health insur-
ance, particularly for the vulnerable, and on access to medical facilities, and to provision of
care throughout the lifecycle. Thus, the right to health in the African Charter can be argued
to provide a legal basis for UHC in African countries. The Principles and Guidelines do not
focus specifically on quality, although this may be argued to be embedded within its concerns.
Given key challenges with patient safety and quality, however, emphasis on this would have been
helpful guidance for domestic policymakers and adjudicatory bodies. At any rate, it remains to
be seen how much the Principles and Guidelines will inform the interpretation of the right to
health and UHC in domestic courts especially given the poor health indices of many African
countries.67
In Nigeria, several cases have been brought on the basis of the right as entrenched in the
African Charter. In Georgina Ahamefule v Imperial Medical Centre the court found for the plaintiff,
holding that the defendant hospital’s denial of medical care to the plaintiff on grounds of her
HIV positive status constitutes ‘a flagrant violation of her right to health guaranteed her under
Article 16 of the African Charter on Human and Peoples’ Rights Ratification and Enforcement
Act Cap 10 and the Article 12 of the International Covenant on Economic and Socio-Cultural

65 Abuja Declaration On HIV/Aids, Tuberculosis and other Related Infectious Diseases (2001) www.eldis.org/document
/A19768 accessed 11 November 2020.
66 African Commission on Human and Peoples’ Rights (n 62) 27.
67 For some of the decisions by the African Commission and within the practice of some African countries, see
Giuseppe Pascale, ‘The Human Right to Health under the African Charter on Human and Peoples’ Rights: An
Evaluation of Its Effectiveness’ (federalism.it 2016)

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Rights ratified by Nigeria in 1999.’68 This case is also relevant for its pronouncement on the
illegality of discrimination on the basis of HIV status.69
In Azubike v Attorney General of the Federation70 and others, the appellants having been previ-
ously sentenced to death were awaiting execution. In the intervening period, they developed
mental health challenges.They argued that continued detention in light of their health condi-
tions violated their rights to dignity and was, therefore, unconstitutional.They also argued that
failure to provide them with medical treatment infringed upon their right to medical treatment
as provided under the now repealed Prisons Act.71 Section 7 of the Prisons Act provided that
where a convict is suspected of being of unsound mind, the person is to be provided with medi-
cal treatment, and the sentence only to be executed after it has been determined that the convict
is of sound mind. Section 8 of the Prisons Act also provided that in the event of serious illness
of a prisoner confined in a prison in which there is not suitable accommodation for him, the
comptroller-general (or, in an emergency, the superintendent) may direct that the prisoner be
sent to a hospital for treatment.Although they were unsuccessful on their claims with respect to
the right to dignity, the court found that their right to health had been infringed upon and that
they had the right to receive medical treatment prior to the execution of the sentence imposed
on them.
More directly, in Joseph Odafe and Others v Attorney-General of the Federation and Others it was
held that the right to health was justiciable pursuant to Article 16 of the African Charter Act.72
In that case, the applicants who were awaiting trial, inmates at the Port Harcourt prison, devel-
oped HIV. They were denied treatment by the prison authorities and they brought action on
the basis that this denial, amongst other things, violated their right to medical care as guaranteed
under Article 16 of the act.The court found in their favour and held that denial of treatment for
HIV was a violation of their right to health. In Femi Falana v Attorney-General of the Federation,
the Federal High Court rejected an application to uphold the right to health on grounds of lack
of locus standi,73 suggesting that the person seeking a declaration must show a direct impact.
In essence, the African Charter provides a strong legal foundation for the right to health in
Nigeria, rendering that right justiciable as is obvious from the cases cited. Universal health cov-
erage provides an avenue for practical programmes to realise the right to health, with the back-
ing of the African Charter. It seems fairly clear from the few cases that have been decided on
this point, however, that not enough use is currently being made of the African Charter to push
forward the goals of UHC. In the absence of research, one can speculate on why, and reasons
may include the length of time it takes to obtain judgment in Nigerian courts (the Ahamefule
case cited earlier, for example, took over ten years), the expenses involved, and perhaps a lack of
education on the breadth of this right under the African Charter.

68 Per Idowu J.
69 See Cheluchi Onyemelukwe,‘Discrimination on the Basis of HIV Status: An Analysis of Recent Developments
in Nigerian Law and Jurisprudence’ (2017) 17(3) International Journal of Discrimination and the Law, 160–79.
70 Azubike v Attorney General of the Federation [2004] Suit No. FHC/PH/CS/679/2003 (Nigeria) (unreported judg-
ment of Justice RO Nwodo).
71 The Prisons Act has now been repealed and replaced by the Nigeria Correctional Services Act, 2019.
72 Odafe and Others v Attorney-General and Others Suit No. FHC/PH/CS/680/2003; (2004) AHRLR 205 (NgHC
2004) (2004) AHRLR 205 at 211; (2005) CHR 309.
73 Femi Falana v Attorney General of the Federation FHC/IKJ/CS/M59/2010.

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 Cheluchi Onyemelukwe

The National Health Insurance Scheme Act and state health insurance schemes
One of the key goals of UHC is the prevention of undue financial hardship.This is captured in
the normative content on the right to health as affordable. Especially in the Nigerian context,
affordability often dictates who gets healthcare and what quality of care they receive.This also
raises the issue of equity, where only those who can afford healthcare receive care. Hospital
detentions occur, where healthcare providers detain patients for failure to pay for care received,74
despite the violation of several rights outside the right to health, including the right to move-
ment and the right to dignity. Similarly, failures of health care facilities to provide emergency
care in several cases in recent years,75 due in part to concerns about payment, underline the
importance of mechanisms to prevent non-accessibility to care due to requirement for payment
at point of care.
In Nigeria, the majority of persons obtain healthcare via payment of user fees or out-of-
pocket payment. This is not only highly inefficient, but it often means that many go without
the care they need and others have catastrophic expenses that adversely affect every aspect of
their lives.76 Although previously, the government funded healthcare including through ‘free’
health programs, this has been unsustainable, leaving many at risk of financial hardship. Health
insurance allows the pooling of funds through the contribution of affordable premiums, and
the distribution of healthcare risks across a wide range of people where some subsidise others,
reducing the individual risks of each person.While private health insurance can be priced out
of the reach of the general populace, social health insurance schemes with essential services
coverage supported by the government can be a good path for low-income countries.77 It is
recognised that an effective health insurance system would not only act as a safety net, prevent-
ing many from falling into undue financial hardship, but would help improve health outcomes
by increasing demand, that is, encouraging individuals to seek the care they need and in a timely
fashion. The Principles and Guidelines in providing the normative content for the right to
health under the African Charter require that national health insurance be established where
necessary to ensure that individuals, particularly vulnerable and disadvantaged persons, ‘are not
prevented from accessing health care services and goods.’78
In 1999, many decades after the idea was first conceived in Nigeria, the National Health
Insurance Scheme Act was passed (hereafter the Scheme).The Scheme, a form of social health
insurance, became operational in 2005. The precepts of UHC and the right to health are key
considerations in this legislation, though not expressly stated. A review of the objectives of the
Act bears this out and they are to ensure that every Nigerian has access to good healthcare services
as well as to protect families from the financial hardship of huge medical bills. Further, limits in the
rise in the cost of healthcare services and equitable distribution of healthcare costs among differ-

74 R Yates and T Brookes, ‘Whitaker E Hospital Detentions for Non-Payment of Fees: A Denial of Rights and
Dignity’ (Chatham House 2017) www.chathamhouse.org/sites/default/files/publications/research/2017-12-06
-hospital-detentions-non-payment-yates-brookes-whitaker.pdf accessed 14 October 2020.
75 ibid 9.
76 Aregbeshola and Khan (n 5).
77 Shops Plus,‘Integrating Family Planning into Universal Health Coverage Efforts’; Ole Doetinchen, Guy Carrin,
and David Evans,‘Thinking of Introducing Social Health Insurance? Ten Questions’ (WHO 2009). www.who.in
t/health_financing/documents/pb_e_09_04-10qshi.pdf?ua=1 accessed 14 October 2020; Guy Carrin and Chris
James, Reaching Universal Coverage via Social Health Insurance: Key Design Features in the Transition Period (WHO
2004) https://apps.who.int/iris/bitstream/handle/10665/69018/EIP_FER_DP_04.2.pdf?sequence=1 accessed
14 October 2020.
78 Article 67(bb).

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ent income groups ensure equitable patronage of all levels of healthcare.With regard to quality,
the objectives include the aim of maintaining a high standard of healthcare delivery services
within the scheme ensure the availability of funds to the health sector for improved services. In
terms of accessibility, the objective of the Scheme is to ensure adequate distribution of health
facilities within the federation.79
The Scheme is responsible for registering health maintenance organisations and healthcare
providers under the Scheme.80 Health maintenance organisations (HMOs) are given the respon-
sibility of collecting contributions to persons covered under the Scheme, the payment of capita-
tion fees to healthcare providers, and establishing a quality assurance system.81 Contributions are
to be made by employers of ten or more employees and other voluntary organisations.
With its laudable objectives, it would appear that Nigeria is on the path to UHC.
Unfortunately, the Scheme has been beset with many challenges in the decade and a half since it
became operational.This includes rate of coverage, the manner of operations, and the impact on
health outcomes in Nigeria.With regard to coverage, at inception, a phased approach to cover-
ing persons was undertaken.The government began by covering employees of the federal public
service and paying a portion of the contributions, in part to obtain buy-in.The state public sec-
tor was expected to follow, but the states (with the exception of two states) did not become part
of the Scheme. Further, 15 years after operations began, many in the informal sector, where the
majority of people work, are still not covered.82 There is no official data on coverage; however,
most research on the matter puts the coverage of Nigerians at less than 5%.83 Some analyses
indicate that this may be because of the voluntary nature of the Scheme, where persons may
choose to be covered or not.84 Moreover, the use of HMOs for the collection of contributions
and payment of healthcare providers has raised a number of issues. HMOs typically act as mid-
dle brokers in the process, receiving risk-free monies and paying capitation fees to healthcare
providers on behalf of the Scheme.This process has been criticised as inefficient and corruption
ridden. Health care providers often complain about delayed payments. Moreover, the National
Health Insurance Scheme (NHIS), the organisation charged with overseeing the health insur-
ance contributions, has also not acted effectively as regulators of the HMOs giving room for
speculation on regulatory capture. Further, key provisions relating to provider payment mecha-
nisms in the act, in particular those relating to capitation. have also been criticised for being
inefficient and being prone to corruption.85 The result is that the Scheme has not delivered on
the promise of UHC.

79 See National Insurance Scheme Act, 1999, section 5.

80 ibid section 6.
81 ibid section 20.
82 BSC Uzochukwu, ‘Health Care Financing in Nigeria: Implications for Achieving Universal Health Coverage’
(2015) 18(4) Nigerian Clinical Journal of Practice 437 www.njcponline.com/article.asp?issn=1119-3077;year
=2015;volume=18;issue=4;spage=437;epage=444;aulast=Uzochukwu accessed 14 October 2020.
83 See, for example, O Onwujekwe, K Hanson K, B Uzochukwu,‘Examining Inequities in Incidence of Catastrophic
Health Expenditures on Different Healthcare Services and Health Facilities in Nigeria’(2013) 5(2) Journal of
Public Health and Epidemiology 51–5; Luminous Jannamike,‘Nigeria’s 5% NHIS Enrollment in 15yrs Shameful
– NMA’ Vanguard (26 August 2019) www.vanguardngr.com/2019/08/nigerias-5-nhis-enrollment-in-15yrs-s
hameful-nma/ accessed 14 October 2020.
84 David A Adewole et al.,‘Payment for Health Care and Perception of the National Health Insurance Scheme in a
Rural Area in Southwest Nigeria’ (2015) 93(3) The American Journal of Tropical Medicine and Hygiene 648–54.
85 Cheluchi Onyemelukwe,‘Re-Positioning the NHIS for Success:A To-Do List for the Executive Secretary’ https
://nigeriahealthwatch.com/re-positioning-the-nhis-for-success-a-to-do-list-for-the-executive-secretary/#
.Xs7TTG5FzmQ accessed 14 October 2020; Aidogie Osamuyimen, Retsepile Ranthamane, and Wu Qifei,

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As a result of the gaps and challenges in the operation and utilisation of the Scheme, a num-
ber of steps have been taken in recent years. One of these steps is the enactment of state health
insurance laws.These laws typically establish state health insurance schemes which address health
insurance at the state level. These laws also typically make health insurance mandatory for all
residents in the state for the purpose of providing expanding coverage towards achieving UHC.
An example of such laws is the Lagos State Health Management Agency Law (2015).The law
provides for mandatory insurance, requiring all residents of the state to be covered by health
insurance. It also provides the state to pay contributions for the vulnerable.
Further, the National Health Insurance Commission Bill is currently awaiting passage at the
National Assembly. The intent of the bill is to address recent occurrences in the health insur-
ance landscape in Nigeria, for instance, recognition of the state health insurance schemes, and
to reposition the NHIS as a regulator and minimise its role as a provider of health insurance.
It remains to be seen how effective these steps will be in the pursuit of UHC.As things stand
today, however, user fees/out-of-pocket payments continue to be the primary avenue for many.
As a consequence, access to healthcare remains inequitable, with poor people, other vulner-
able persons, and many in rural areas unable to receive the care that they need without undue
financial hardship.
The mandatory nature of health insurance in the emergent states’ health insurance schemes
also provides room for accountability in the courts, especially with regard to the provisions
requiring states to contribute towards the care of the vulnerable.This creates an obligation that
can ground right-to-health arguments before the courts.The question of justiciability becomes
moot, because as noted in the cases cited earlier, the health insurance legislation is a standalone
legislation that has provided grounds for such actions.At this time, no claims have been brought
before the court on the limited coverage provided under the NHIS on the grounds of the right
to health. Such a claim would, no doubt, expand the jurisprudence on health insurance as a
core component of UHC and the right to health, and also support access to quality healthcare
in Nigeria.

The Child Rights Act

Although this is true generally, it is particularly true in the case of children that the right to
health is a precursor to the enjoyment of all other rights.The Convention on the Rights of the
Child (CRC) provides for the right of a child to ‘the enjoyment of the highest attainable stand-
ard of health and to facilities for the treatment of illness and rehabilitation of health.’86 This right
also includes the requirements to ensure that no child is deprived of access to healthcare services,
and the requirement for states to take measures to prevent infant and child mortality, ensure pro-
vision of necessary healthcare with emphasis on primary health care; ensure measures to combat
disease and malnutrition and provision of adequate nutritious food and clean drinking water;
ensure appropriate prenatal and postnatal care for mothers; and ensure access to education on
child care, including the benefits of breastfeeding, hygiene, environmental sanitation, and meas-
ures to prevent accidents; and develop preventive health care and family planning education.87

‘Analysis of Nigeria Health Insurance Scheme: Lessons from China, Germany and United Kingdom’ (2017)
22(4) IOSR 33.
86 Convention on the Rights of the Child,Article 24.
87 ibid Article 24(2).

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 Right to health in Nigeria

In addition, other international instruments including the ICESCR’s and the African
Charter’s provisions on the right to health also apply to children. More specifically, the African
Charter on the Rights and Welfare of the Child also provide that ‘every child shall have the
right to enjoy the best attainable state of physical, mental and spiritual health.’88 It goes on to
reproduce the requirements set out in the CRC, but also requires the ‘meaningful participation
of non-governmental organizations, local communities and the beneficiary population in the
planning and management of basic service programmes for children.’89
Nigeria ratified the CRC in 1991 and domesticated it in 2003, enacting the Child Rights
Act.The Child Rights Act is thus enforceable in Nigeria. Under the Child Rights Act, a child is
defined as a person below the age of 18.90 The right to health of a child is captured in section 13,
which clearly states:‘Every child is entitled to enjoy the best attainable state of physical, mental and
spiritual health’ in line with the CRC. It similarly reproduces all the requirements of the right to
health provided in the CRC as stated earlier.These include the right to access healthcare services
and the determinants of health including clean drinking water, food, etc. In addition to those
provisions, it makes the immunisation of a child under the age of 2 compulsory, failure of which
constitutes a criminal offence.91 It is important to note that the rights of a child under the Child
Rights Act are in addition to all other rights conferred by the Constitution92 and other legislation.
There is no doubt that the right of health of a child can be enforced under the Child Rights
Act. Justiciability is, thus, not in issue. In reality, Nigeria has some of the world’s highest rates of
infant and child mortality, including from malnutrition, and childhood and vaccine-preventable
diseases.Violence against children, including female genital mutilation and child marriage, con-
tinue to be challenges that have significant adverse impacts on the health of children in Nigeria.
UHC remains illusory given the continuing challenges of access to healthcare. As a result, chil-
dren under 5 are covered under most state health insurance schemes as part of the vulnerable
groups for whom the states make contributions. But this is far from sufficient in covering all
children, especially those between the ages of 6 and 18.While the Child Rights Act makes vac-
cination compulsory on pain of criminal sanction, thus placing an obligation on parents and
guardians of children, it does not place a similar obligation on the government to ensure the
accessibility of such vaccines.93
The right to health of a child and its practical manifestation in universal health coverage has
not been litigated in Nigeria. But, clearly, the law provides a mechanism for holding the govern-
ment accountable to address these issues within the framework of the right to health.

The National Health Act

The National Health Act is now recognised as the primary statutory enactment on health
service delivery in Nigeria. Enacted in 2014 after many years of advocacy, the Act sets out the
several key provisions in relation to the organisation of the health system and with regard to
matters ranging from quality and human resources for health to patients’ rights. It also makes

88 African Charter on the Rights and Welfare of the Child,Article 14.

89 ibid Article 14(2)(j).
90 Child Rights Act 2003, section 277.
91 ibid section 13(4).
92 ibid section 3.
93 See Cheluchi Onyemelukwe, ‘Can Legislation Mandating Vaccination Solve the Challenges of Routine
Childhood Immunisation in Nigeria?’ Oxford University Commonwealth Law Journal (Forthcoming); Oxford
Legal Studies Research Paper, https://ssrn.com/abstract=2717479 (accessed 14 October 2020).

197
 Cheluchi Onyemelukwe

some key financial provisions. For the first time, the law recognises the basic outlines of the
health system. Arguably, it does not specify the responsibilities of the three tiers of government
in a clear enough manner; one of the key reasons why the Act was necessary in the first place.
What it does do with respect to universal health coverage, however, is to provide an entitle-
ment to a basic minimum package of services, increase funding to primary health, and set out
the rights of patients, thus addressing quality concerns. It also provides legal authority for key
governance mechanisms such as the National Council on Health, which has the authority to
approve the National Health Policy.94 In this way, it gives indirect legal force to the provisions
in the National Health Policy. (It will be recalled that the vision of the extant National Health
Policy is the achievement of universal health coverage.95) In essence, the National Health Act
outlines the health system recognising federal, state, and local government levels; governance
structures; and quality mechanisms in part to achieve UHC in Nigeria.
Specifically, the National Health Act provides that every person is entitled to a basic mini-
mum package of services stating: ‘Without prejudice to the prescription by the Minister in
section 3(1) of this Act, all Nigerians shall be entitled to basic minimum package of health
services.’96 A basic minimum package of health services, also referred to as an essential package of
health services especially in a low-income setting is defined as ‘a limited list of public health and
clinical interventions which will be provided at primary and/or secondary level care.’97 It aims
to provide a minimum package that the state will provide typically through a social health insur-
ance scheme or tax-based financing for healthcare. Its main goal is to provide equity, ensuring
that everyone, regardless of income level can access basic healthcare at a cost that is affordable,
thus actualising the concept of universal health coverage. From the provision of the National
Health Act, this will apply to all Nigerians without exception.
The basic minimum package of services is to be funded from the Basic Health Care Provision
Fund, an intervention fund established under section 11 of the National Health Act.The Basic
Health Care Provision Fund (BHCPF) is also expected to fund certain specified primary health
care services as provided under the National Health Act. BHCPF is to be funded from the fed-
eral government annual grant of not less than 1% of its Consolidated Revenue Fund; grants by
international donor partners; and funds from any other source. Money from the Fund is required
under the Act to be employed to finance the following:

(a) 50% of the Fund shall be used for the provision of basic minimum package of health ser-
vices to citizens, in eligible primary or secondary health care facilities through the National
Health Insurance Scheme (NHIS);
(b) 20 per cent of the Fund shall be used to provide essential drugs, vaccines and consumables
for eligible primary health care facilities;
(c) 15 per cent of the Fund shall be used for the provision and maintenance of facilities, equip-
ment and transport for eligible primary healthcare facilities; and
(d) 10 per cent of the Fund shall be used for the development of human resources for primary
health care;

94 National Health Act, section 4.

95 National Health Policy, 2016, xiv.
96 Section 3(3) of the National Health Act.
97 WHO,‘Essential Health Packages:What Are They For? What Do They Change? Technical Brief no 2, 2008’ www
.who.int/healthsystems/topics/delivery/technical_brief_ehp.pdf accessed 14 October 2020.This is in contrast to
developed countries where the package often is more extensive and what is provided is typically a list of exclu-
sions.

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 Right to health in Nigeria

(5) 5 per cent of the Fund shall be used for emergency medical treatment to be administered
by a Committee appointed by the National Council on Health.

The preceding provision breaks down the manner in which the monies shall be spent.The use
of the word ‘shall’ throughout that section indicates peremptoriness, a mandatory obligation.
The Fund cannot be disbursed otherwise.This minimum basic package, discussed earlier, shall
be provided through the health insurance scheme, specifically the National Health Insurance
Scheme (NHIS). The National Primary Health Care Development Agency (NPHCDA) is
required to disburse the funds for subsection 3(b), (c), and (d) of this section through state and
federal capital territory primary healthcare boards for distribution to local government and area
council health authorities through a grant process. The Act also makes mandatory the provi-
sion of counterpart funding by states and local governments.The provisions of the Compulsory
Universal Basic Education Act are similar, requiring counterpart funding from states. In practice,
states have been either unable or unwilling to provide the counterpart funding, with the result
that billions of naira in funding for education have not been accessed with consequent adverse
outcomes for education in the country.98
The NPHCDA is given the responsibility of developing guidelines for the administration,
disbursement, and monitoring of the Fund with the approval of the Minister of Health. As
set out in the National Health Act, the BHCPF is being disbursed through three gateways,
namely through the NPHCDA Gateway, National Health Insurance Scheme (NHIS Gateway),
and Federal Ministry of Health (for emergency care). However, although the money has been
inserted in the budget since 2018 from the Consolidated Revenue Fund, with support from enti-
ties such as the Bill and Melinda Gates Foundation, there have been ongoing debates amongst
the key stakeholders involved in defining guidelines. Unfortunately, the National Health Act
does not define the services which comprise a basic minimum package of care. The process
of developing a basic minimum package of services is thus ongoing, along with the guidelines
for the disbursement of the BHCPF. There are many things to take into consideration: the
economic constraints of the country as well as the basic healthcare needs of all Nigerians.The
promise of the National Health Act, with respect to universal health coverage, is, therefore, yet
to be fulfilled for Nigerians.
Can the entitlement to a basic minimum package be considered to be a right enforced in
Nigerian courts, thereby requiring governments to provide a basic minimum package of care?
The short answer is yes. Going by the Supreme Court decision in A G Ondo State v. A G
Federation as discussed earlier, this provision is enforceable on its own before the courts. In addi-
tion, the language of the provision, using the words ‘shall’ and ‘entitlement’ requires mandatory
execution of the provision by the government. However, an examination of the National Health
Act does not provide a clear enforcement procedure for this provision.This poses a problem, but,
perhaps, not an insurmountable one.While no clear mechanism for enforcement is provided, the
constitutional authority of the High Court in Nigeria, as provided under the Constitution, will
allow it to hear matters on a breach of this entitlement.What is not clear is what sort of remedy
it would be able to provide given the lack of clarity of the National Health Act. It is expected
that human rights organisations will bring action in Nigerian courts in a not too distant time. It
is, therefore, appropriate that the federal government implements the provision entitling all to a

98 Anibueze et al., ‘Counterpart funding of the Universal Basic Education in Nigeria: Implication for Counseling’
(2013) 17(2) IOSR Journal of Humanities and Social Science 11–16.

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 Cheluchi Onyemelukwe

basic minimum package by establishing the basic minimum package and providing it as required
by the National Health Act.
Apart from the financing aspects of the National Health Act, provisions are also made relat-
ing to quality.These provisions include establishment of several institutional structures to ensure
quality such as the National Tertiary Institutions Committee, which is required to establish
standards through the issuance of a Certificate of Standards. Unfortunately, the Act does not
set out the basic requirements for qualification of the Certificate of Standards. In the over five
years of enacting the act, the guidelines or regulations for obtaining this certificate have yet to
be provided.The National Health Act also, for the first time in legislation, set out several rights
a patient or user of a health facility is entitled to (thus laying the foundation for the Patients’
Bill of Rights,99 which though not law itself, captures the various rights of patients as found
in the National Health Act and other pieces of legislation). The Act provides for the right to
emergency treatment,100 the right to informed consent,101 and the right to confidentiality.102 It
also requires each healthcare facility to place a statement of these rights in a conspicuous place in
the health facility.103 Apart from patients’ right, it also provides the right of healthcare providers
to protection from abuse by patients,104 and from occupational hazards and potential for con-
tracting infectious diseases.105 The National Health Act, thus, sets out a framework for financing,
governance, and quality, which, if effectively implemented, will support and promote universal
health coverage.
It is likely that the courts will have a reasonable opportunity to develop the jurisprudence
and enhance the right to health for Nigerians through progressive interpretations of the right to
the basic minimum package and of the rights of users of healthcare facilities.

Discrimination against Persons with Disabilities (Prohibition) Act, 2018

Aside from the legislation whose core focus is the implementation of universal health coverage,
and, therefore, to a significant extent, the right to health, the Discrimination against Persons
with Disabilities (Prohibition) Act, 2018, which provides for non-discrimination, also addresses
other aspects of universal health coverage. In this regard, it provides for the right to unfettered
access to adequate healthcare without discrimination on the basis of disability.106 This clearly
applies to both private and public health facilities. Further, it provides for the right of persons
with mental disabilities to free healthcare in all public facilities.107
These provisions, while commendable, are also problematic to a degree. It is not quite clear
what is meant by ‘unfettered access.’ Does it mean provision of infrastructure for accessibil-
ity, hearing aids, and other equipment and support for persons living with a disability? In my
view, the answer is in the affirmative. Non-discrimination is a core tenet of both the right to
health and universal health coverage, emphasising the need for universality, equality, and dig-
nity. But what about user fees, a key barrier for persons living with a disability? The section is

99 National Health Act, sections 23, 26, and 29.

100 ibid section 20.
101 ibid section 23.
102 ibid section 26.
103 ibid section 24(e).
104 ibid section 21(2)(a).
105 ibid section 21(2)(b).
106 Discrimination against Persons with Disabilities (Prohibition) Act, 2018, section 21(1).
107 ibid section 21(2).

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 Right to health in Nigeria

seemingly couched in such a manner as to preclude government responsibility in this regard.

This view is bolstered by the clear meaning of the accompanying provision which provides
free care for persons living with mental disability in public facilities.The provision, thus, does
not meet the standards for the right to health (which requires health provision for persons liv-
ing with a disability) when read on its own. However, read in conjunction with the provisions
in the National Health Act, the government is obliged to provide the minimum package of
service that persons living with a disability require. A progressive and broad interpretation of
these provisions by courts in Nigeria is essential to ensure that persons living with disability
enjoy the right to health. This is the only way to put meaning into the word ‘universal’ in
universal health coverage.

Conclusion
It is apparent that there is a nexus between universal health coverage and the right to health.
One may be tempted to argue that the right to health is a broader framework, but it is clear
that the right to health provides the human rights and legal basis for universal health coverage.
Nigeria, like many countries around the world, with the support of international development
organisations has adopted universal health coverage as the vision for improving the country’s
poor health indices.This is even more firmly embedded with the SDGs framework, also adopted
by Nigeria.
One key question that this chapter sought to answer was whether there was a legal foun-
dation for the concept of universal health coverage, especially in light of the non-justiciabil-
ity of socio-economic rights, including the right to medical facilities for all in the Nigerian
Constitution. This chapter has examined the legal foundations for universal health coverage,
analysing the enforceability of the right to health in Nigeria. Although socio-economic rights
are generally not justiciable, an exploration of Nigeria’s jurisprudence and legislation has shown
a clear movement towards justiciability. This is emphasised in the legislation that has been
enacted since the current democratic dispensation, including the African Charter on Human
and Peoples’ Rights in 1983, the National Health Insurance Scheme in 1999, the Child Rights
Act in 2003, the National Health Act in 2014, and the Discrimination against Persons with
Disabilities (Prohibition) Act in 2018, and emergent state health insurance schemes.
However, while the legal framework is laudably progressive, implementation is lagging. At
present, few cases have been brought on the basis of the emerging legal framework for uni-
versal health coverage in Nigeria. But, it is clear that there are legal obligations imposed on
the government to implement universal health coverage to the maximum extent allowed by
law.This is not simply a moral or ethical obligation but a legal obligation, enforceable under
Nigeria’s international legal obligations and within the domestic courts.These laws also pro-
vide an advocacy instrument for civil society organisations and for human rights advocates
to demand accountability and to build upon the progress that has resulted in the enactment
of these laws.
Each of the emergent laws has potential to deepen universal health coverage.The National
Health Act, in particular, provides a robust foundation for the expansion of the jurisprudence
on the right to health in Nigeria. Much more engagement is required to extend the conversa-
tion around basic minimum packages of care and to expand the package in line with need and
economic realities but also the human right to health. Moreover, an argument could be made
that there is need for more robust laws, for example, with respect to coverage for persons with
disability. But this can only be fruitfully engaged with when there is significant implementation
of the already existing laws to protect, fulfil, and promote the right to health in Nigeria.

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 Cheluchi Onyemelukwe

References
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2020.

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 12
REALISING THE RIGHT
TO HEALTH IN KENYA
Connecting health governance outcomes
to patient safety perspectives

Naomi N Njuguna

In early March of 2018, Kenya awakened to one of the biggest medical error scandals to hit
the headlines. It involved the largest national referral hospital in Kenya and in East Africa – the
Kenyatta National and Referral Hospital. A patient who had been admitted with a swelling
on the head, and who only required nursing and medication, was wheeled into theatre to
have brain surgery. It was only hours into the surgery that the neurosurgeon discovered that
there was nothing wrong with the brain of the patient, and the mistake was discovered – they
had the wrong patient.1 In a clear case of patient identity mix-up, the incident demonstrated
the systemic failures of the admission procedures, record-keeping, patient identification, and
patient monitoring within the hospital, which seriously compromised patient safety.The hos-
pital was dogged the same year with other major scandals involving sexual assault on female
patients in the maternity wards as well as baby stealing sagas. Following the suspension of the
neurosurgeon and the assisting team (two nurses and the anaesthetist), a strike was called by
the union protesting his suspension for the systemic failures of the hospital, which included
poor working conditions for doctors, such as heavy workloads, leading to fatigue and stress.
Medical errors and adverse events are not uncommon in public health facilities in Kenya,
bringing into sharp focus the quality of health services in light of the constitutionalised right
to health.
The journey to realising the right to the highest attainable standard of health in Kenya begun
partly by including the right within the Constitution of Kenya 2010 and partly by adopting a
governance model that devolved health services to county governments. Other policy initiatives
such as universal health coverage are also part of this journey.
Patient safety is an integral component of both the right to health and of health systems
governance. In integrating patient safety within these two thematic concepts, a discussion and

1 See Betty Njeru,‘KNH on the Spot after Brain Surgery Is Performed on Wrong Patient’ Standard Media (2 March
2018) www.standardmedia.co.ke/nairobi/article/2001271660/knh-on-the-spot-after-brain-surgery-is-perfo
rmed-on-wrong-patient accessed 14 October 2020.

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 Naomi N Njuguna

interrogation of issues beyond what occurs at the clinic or health facility level is needed. It
implies going beyond an examination of the relational aspects of patient safety and moving to
consider the hierarchical aspects of governance and how those aspects interact with each other
in order to influence the perceptions of the concept of harm to patients.
The purpose of this chapter therefore is to discuss how the concept of patient safety can be
understood in the context of the wider considerations that the country has to take into account
in health governance and service delivery in the public sector health facilities. Particular atten-
tion will be placed on the outcomes of devolution of health services and how this has affected
patient safety. Harm reduction is thus construed in a way refocuses attention from the clinical
relationship of the healthcare provider and the patient, and to the regulatory, policy, and gov-
ernance framework that affects this relationship, particularly in government-run health facilities
in Kenya. The discussion is centred on the public sector because more patients seek the more
affordable services in public sector health facilities in the country, although its implications
can be translated for use by the private sector.2 Patient safety perspectives and reforms in the
public sector are thus bound to affect a greater percentage of the populace in Kenya. Health
service delivery and patient safety are multifaceted issues and therefore an integrative approach
is needed to comprehensively deal with the factors that compromise patient safety in public
sector hospitals in Kenya.

Understanding patient safety in Kenya: expanding the concept of patient harm

In 2013, a survey was conducted by the Ministry of Health in Kenya, in conjunction with
partners – the World Health Organization, the IFC World Bank Group, Safe Care, and UKaid
– to assess the levels of patient safety in Kenyan hospitals.3 The intention was to roll out the
Kenya Quality Model for Health initiative. Five areas of risk were considered, namely leadership
process and accountability; competent and capable workforce; safe environment for staff and
patients; clinical care of patients; and improvement of quality and safety. Most facilities scored
poorly with overall compliance for public hospitals at 0.26% and scores for non-public hospitals
at 1.87%.
A simple definition of patient safety is ‘the avoidance, prevention and amelioration of adverse
outcomes or injuries stemming from the process of healthcare.’ It is the prevention of adverse
events and mistakes or errors that can take place within the healthcare setting.The World Health
Organization (WHO) has defined patient safety as aiming ‘to prevent and reduce risks, errors
and harm that occur to patients during provision of healthcare.’4
In Kenya, the most common medical errors consist of diagnostic errors, where there are
failures to order the correct or appropriate tests as well as correct application of the test results.
Other common errors are medication errors, hospital-acquired infections, delays in diagnosis
and treatment, and failure to monitor and follow-up with the patient after diagnosis and pre-
scription. Errors also occur as a result of the lack of competency and the recklessness of health-
care professionals.

2 See Juliet Atellah,‘Where Do Kenyans Seek Medical Treatment?’ (Elephant) www.theelephant.info/data-stories/2

019/02/08/where-do-kenyans-seek-medical-treatment/?print=pdf accessed 14 October 2020.
3 See An Assessment of Patient Safety Standards in Kenya: Summary Report of Patient Safety Survey (2013) https://ua
singishureproductivehealth.files.wordpress.com/2015/08/kenya-patient-safety-survey-report-2014.pdf accessed
14 October 2020.
4 See WHO, ‘Patient Safety’ www.who.int/news-room/fact-sheets/detail/patient-safety (WHO, 13 September
2019) accessed 14 October 2020.

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 Realising the right to health in Kenya

According to Vincent, ‘patient safety however is a broad endeavour that requires thinking
beyond the individual patient to consider the characteristics of the whole system of healthcare.’5
A systemic consideration of patient safety requires an analysis of the underlying determinants
of medical errors. In public health facilities, these underlying determinants affect the decision-
making processes and actions of health facility managers as well as healthcare workers as they
deal with patients. Many of the errors and adverse events are not as a result of carelessness or
recklessness, or incompetence of the health professionals, but are due to macro factors that are
beyond their control. Focusing on error minimisation may fail to highlight broader conceptions
and perceptions of harm to patients.
Current discourse on patient safety needs to take into account the context within which it
is being applied. Understanding of the factors that may undermine patient safety is essential.
Factors in low- and middle-income countries (LMICs) may be fundamentally different from
those in high-income countries.The concept of harm therefore takes on an expanded mean-
ing beyond the making of medical errors in the hospital. Harm reduction should not merely
be limited to medically related harm. Patient safety therefore needs to be considered beyond
therapeutic interventions within the clinical setting to broader macro factors that are influ-
enced by decision-makers at the governmental level.This means taking into account policies,
programmes, governance models, and other regulatory interventions. Issues such as politics,
corruption, lack of accountability and transparency, misinformation, disputes, mismanage-
ment, unsafe working conditions for healthcare workers, unethical conduct, and human rights
violations all contribute towards the adverse events and harm that take place within healthcare
settings.
A more integrated and system-based view of the concept of safety is needed within health-
care facilities in order to reduce the nature and types of harm that patients face. A causality
analysis needs to be conducted particularly in LMICs in order to determine the various under-
lying and root causes of the factors that can cause patient harm. Similarly, there needs to be an
identification of policy gaps and assessment of the healthcare contexts in order to formulate
effective evidence-based policy measures for patient safety. Patient safety ‘should form the foun-
dation for the strengthening of healthcare systems.’
Developing a culture of safety needs to be done taking into account patient perspectives on
the one hand and healthcare worker perspectives on the other.Wagner et al. argue that the psy-
chosocial working conditions of healthcare workers, as well as leadership, and patient safety and
occupational safety climates are all interrelated facets within the conversation of patient safety
that need to be holistically considered.6

Possible perceptions of harm by patients in public

hospitals in Kenya and the underlying causes
Harm as a result of medical detention over unpaid hospital bills
The practice of many hospitals of detaining patients who have received treatment and are due
for discharge has resulted in many patients feeling anxious, depressed, and distressed, even if they
have been treated for their physical ailments. There is significant mental and emotional harm

5 Charles Vincent, ‘The Essentials of Patient Safety’ (2011) adapted from his book Patient Safety (2nd edn Wiley-
Blackwell 2010) 4.
6 Anke Wagner et al.,‘Healthcare Professionals’ Perspectives on Working Conditions, Leadership and Safety Climate:
A Cross-Sectional Study’ (2019) 19 BMC Health Services Research 53.

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 Naomi N Njuguna

that occurs as a result of medical detention due to unpaid hospital bills. Patients may feel like
prisoners. The continued stay in a hospital setting also increases the risk of hospital-acquired
infections. Mothers who have just delivered and their infants are particularly vulnerable, as well
as patients who have recovered from COVID-19, and who may be detained in hospitals due to
unpaid hospital bills. Patients who are detained often feel that their human rights are being vio-
lated by the very same people who should be protecting their rights. And, indeed, their human
rights are being violated.Various international provisions come into play, including Article 13
of the Universal Declaration of Human Rights (UDHR),Articles 9 and 11 of the International
Covenant on Civil and Political Rights, and Article 6 of the African Charter on Human and
Peoples’ Rights (ACHPR). The Constitution of Kenya also has provisions which are violated
when a patient is detained over unpaid medical bills.7
The courts in Kenya have declared it unconstitutional and illegal for a patient to be detained
over unpaid medical bills. One such case is Gideon Kilundo & Daniel Kilundo Mwenga v Nairobi
Women’s Hospital,8 where the senior Kilundo, after being involved in a serious car accident, was
treated and made a full recovery at the Nairobi Women’s Hospital. He incurred a medical bill
of Kshs. 1,033,196, which was unsettled at the time of discharge. The hospital then opted to
detain him until he paid the bill prompting the constitutional petition.The court had to engage
in a balancing act between protecting the hospitals rights to property in the form of monetary
payment and the petitioner’s right to liberty. In the end, the court made a declaration that the
detention was illegal and that the hospital could recover the unpaid debt in court rather than
violate the patient’s human rights.
Hospital detentions harm the dignity of the patient and may cause more harm and compli-
cations to the patient than they came in with. The case of MAO & Another v AG & 4 Others9
is a case in point. The petitioners were patients at Pumwani Maternity Hospital where they
had been admitted, and as a result of their indigence they were unable to pay and hence were
detained by the hospital for more than 21 days.Their case showed the kind of harm that patients
would face at the hands of health professionals and also due to weak hospital systems.They were
spoken to rudely when they sought assistance, had to share beds with other detained patients,
and even sometimes had to sleep on the cold floor to allow their infants to use the bed.They had
to purchase their own cups, plates, cotton wool, and other items needed in their management
before they received any treatment.The bed had only one light blanket.The ward in which they
were detained was near a flooding toilet that was hardly cleaned.They were not attended to or
examined by the attending doctor. Detained patients were always fed last and therefore the food
was never adequate. For nursing mothers, this led to stress as they did not have enough nutrition
to breastfeed their infants.Their detention caused anxiety as they had other children at home.
They were not even allowed to go outside to get fresh air and sunshine due to the fear that they
would escape.The first petitioner, upon discharge, discovered that she had contracted pneumo-
nia as a result of the numerous nights sleeping on a cold hospital floor next to a flooded toilet.
The second petitioner was rushed to the hospital because she had developed complications, and
upon arrival was told to sleep on the floor as all the beds were occupied. Upon discharge, she
was not shown an itemised bill but was given a figure to pay, which she could not afford.The

7 Constitution of Kenya 2010,Articles 28, 29, and 39.

8 (Petition No. 242 of 2018) (2018) eKLR; see also Veronica Nyangai v Nairobi West Hospital Ltd (2017) eKLR;
Chirstine Kidha v Nairobi Womens Hospital (2016) eKLR; and Tryphosa Jebet Kosgey v Eldogn View Hospital (2016)
eKLR.
9 MAO & Another v AG & 4 Others (2015) eKLR.

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type of harm suffered by these patients may not be the typical errors and adverse events that have
been the focus of patient safety discussions, but are nevertheless harms that compromise patient
safety, particularly in LMICs.
The underlying causes of hospital detentions can be traced to weak financing systems for
access to health services that leave patients with no option but to incur out-of-pocket expenses
to access healthcare. Medical detention is evidence of failed universal health coverage (UHC).
Patients who are poor and are unable to pay for health services are the ones who should benefit
the most from UHC, but ironically are the ones who end up suffering violations of their rights
because they cannot afford to pay. UHC will be discussed later in the chapter. Hospital deten-
tions can also be attributed to weak governance and monitoring systems that allow for these
violations of patient rights.

Harm as a result of disrespectful and unethical conduct by health professionals

It is not uncommon in public health facilities to hear of patients’ complaints concerning the level
of disrespect and abuse they have undergone at the hands of the health professionals handling
them. The disrespect comes in the form of verbal and physical abuse, neglect, abandonment,
discriminatory action, breach of confidentiality and privacy, and non-consensual treatment.The
effect of this kind of treatment is fear by patients of accessing health services where they will
be mistreated and mishandled. Pregnant women particularly face this kind of fear, contribut-
ing to high rates of maternal and infant morbidity and mortality, as birth complications cannot
be adequately handled by unskilled local midwives. A report by FIDA Kenya and Centre for
Reproductive Rights showed that women in labour would often face mistreatment such as the
pinching of thighs, slapping, and beating.10
Unlike Western jurisdictions where the patient’s views and consent are considered central in
the treatment process, in Kenya cultural perceptions render the patient in subservience to the
views of the health professional. ‘Doctor knows best’ seems to be the order of the day, and any
questioning of this may lead to tension between the patient and health professional, with the
latter being disrespectful to the patient. Medical paternalism is thus used to abuse and disrespect
patients. Impoliteness and disrespect impede other human rights, for instance the right to dig-
nity and autonomy (self-determination). As a result of the cultural perception of doctor knows
best, health professionals are many times unwilling to share decision-making authority with
patients. Treatment can then be done without consent and proper information being shared
with the patient.This generates feelings of isolation, exclusion, and intimidation in the patients,
who may then suffer more harm as a result of these feelings. Lack of respect for the autonomy
of the patient includes the lack of recognition of the cultural beliefs or personal beliefs or value
system of the patient, and for the right to proper and full information concerning the course
and procedures of their treatment.The case of forced sterilisation of mothers living with HIV
illustrates this point.11
Disrespect and abuse are now deemed public health issues which need to be addressed using
multi-component interventions beyond the clinical setting. Relying on the findings of the

10 FIDA Kenya and Centre for Reproductive Rights, Failure to Deliver:Violation of Women’s Human Rights in Kenyan
Health Facilities (2007) www.reproductiverights.org/sites/default/files/documents/pub_bo_failuretodeliver.pdf
accessed 11 November 2020.
11 SWK & 5 Others v Medecins Sans Frontier France & 10 others (Petition No 605 of 2014).

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 Naomi N Njuguna

Heshima Project conducted between 2011 and 2014,Abuya et al.12 propose interventions at three
levels – the facility level, the community level, and the contextual level. It is the third level that is
of concern for this chapter.The context under which these health services are offered is impor-
tant – the devolution of health services and the introduction of free maternity services in public
health facilities and implications this had for human resources for health.The shortages of health
workers lead to heavy workloads, fatigue, stress, and burnout.This is turn leads to the indifferent,
impersonal, and dehumanised feelings that health workers have towards their patients.
Despite the National Patients’ Rights Charter, the different codes of conduct for the different
health professionals, and the enactment of the Health Act, it seems that the harm that patients suf-
fer as a result of disrespect, abuse, and unethical conduct is far from quelled in public hospitals in
Kenya.

Harm as a result of denial of emergency medical

treatment and poor referral systems
Sometime in 2015, a casual labourer by the name Alex Madaga was involved in a tragic road
accident that left him with serious head injuries. He spent 18 hours in an ambulance waiting to
be admitted to Intensive Care Units in four different hospitals. Each of the hospitals did not offer
him emergency medical services. Eventually he was admitted at the Kenyatta National Hospital,
when an ICU bed became available, but he succumbed to his injuries shortly thereafter, in a
case that exposed the glaring weakness in the implementation of the Constitutional right to
emergency medical treatment.Article 43(2) of the Constitution of Kenya, 2010 provides:

A person shall not be denied emergency medical treatment.

This has been reiterated in the Health Act 2017.

Emergency medical treatment has been defined in various documents in Kenya. In the
Health Policy it has been given a comprehensive definition as including

First aid treatment of ambulatory patients and those with minor injuries; public health
information on emergency treatment, prevention and control; and administrative sup-
port, including maintenance of vital records and providing for a conduit of emergency
health funds across government.

It also provides that

Emergency health services shall be a part of the referral services and shall be provided
by the nearest health facility, regardless of ownership (both public and private).

The Health Act 2017 provides that

Emergency treatment refers to necessary immediate health care that must be adminis-
tered to prevent death or worsening of a medical condition.

12 Timothy Abuya, Charity Ndwiga, Julie Ritter, Lucy Kanya et al.,‘The Effect of a Multi-Component Intervention
on Disrespect and Abuse During Childbirth in Kenya’ (2015) 15 BMC Pregnancy and Childbirth 224.

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 Realising the right to health in Kenya

The National Patients’ Rights Charter contains similar provisions that seek to guarantee the
right to emergency medical treatment.
Despite these lofty provisions of law, there are serious challenges faced in public health
facilities in offering emergency medical treatment for patients.13 The challenges occur in three
main ways: firstly, there is failure to admit patients in order that they may receive appropriate
emergency medical care. Many facilities are managed by clinical officers or senior nurses or even
interns straight from university who have minimal experience in resuscitation and stabilisation
of a patient in need of emergency care. Secondly, there are many facilities that do not have the
appropriate systems and are not well designed to accommodate patients requiring emergency
medical treatment. The COVID-19 pandemic has demonstrated the weakness in the public
health sector in the country. In a recent study conducted to assess the surge capacity of the
Kenyan health system as a result of the increased infections, it was found that only 22 out of the
47 counties in the country had at least one intensive-care unit.14 This situation has compromised
the safety of patients who seek emergency treatment, particularly in public health facilities as
they are often turned away due to lack of bed space.15 Thirdly, there are referral systems that
do not work efficiently and effectively. The referral system in Kenya is overburdened because
patients bypass the primary health facilities and seek treatment directly at referral institutions,
even for minor ailments.The referral system is meant to ensure that there is continuity of care
and management of the patient from the lower-level facilities to the higher-level facilities. It is
intended to ensure that where there are no ‘locally’ available resources in the facilities, the patient
can then be referred to another facility where the resources are available. However, the system
as it is in Kenya would actually cause the patient more harm than good.The referral hospitals in
Kenya are overcrowded, which means that at any one given time, there are no beds available to
cater for inpatients. In many instances, patients have to sleep on the floor or share beds. In 2019,
the Parliamentary Health Committee released a report which showed the deplorable conditions
of four national referral hospitals that compromised the safety of patients. There was a total
lack of plant and equipment maintenance and replacement. At the Kenyatta National Hospital,
there were weekly deaths of up to 80 babies in the newborn unit.The facilities were dilapidated
with leaks and cracks, as well as poor sanitation. There was an understaffing of nurses with a
ratio of 50 patients to 1 nurse.The daily inpatient volume was up to 2093 patients, but the bed
capacity was only 1800.The Mathari Teaching and Referral Hospital, which is the only mental
hospital in the country, has a paltry staff of 386 against the recommended international levels
of 1077. There is overcrowding of patients in the facility which makes it difficult to monitor
and treat them.The facilities are also rundown and dilapidated.The same story resonates at the
Moi Teaching and Referral Hospital, which serves the whole western region of the country – a
population of about 25 million. Each of these hospitals has bad debts and waivers, as well as lack
of reimbursement from the National Hospital Insurance Fund (NHIF), the national insurer, for
patients who have paid using the insurance scheme.They have also faced budgetary constraints.

13 Morgan C Broccoli, Emilie J B Calvello, Alexander P Skog, Benjamin Wachira, and Lee A Wallis, ‘Perceptions
of Emergency Care in Kenyan Communities Lacking Access to Formalised Emergency Medical Systems:
A Qualitative Study’ (2015) BMJ Open 1; B Wachira and IBK Martin ‘The State of Emergency Care in the
Republic of Kenya’ (2011) 1 African Journal of Emergency Medicine 160.
14 Edwine W Barasa, Paul O Ouma, and Emelda A Okiro, ‘Assessing the Hospital Surge Capacity of the Kenyan
Health System in the Face of the COVID-19 Pandemic’ (2020) 15(7) PloS ONE 1.
15 The government of Kenya has recently rolled out the Protocol on Home Based Care for COVID-19 patients
due to the lack of capacity to manage them in the hospitals. See Ministry of Health, Home Based Isolation and Care
Guidelines for Patients with COVID-19 (Ministry of Health June 2020).

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For example, the budget for Mathari hospital was reduced from Kshs. 114 million to 92 million,
and faced a lack of reimbursement from NHIF of Kshs. 104 million.
Another study conducted to bring out the challenges faced in the referral systems in Kenya16
showed that there was lack of ambulatory services for emergency cases, lack of skill for health
workers in dealing with referrals, lack of standard referral documents so that even emergency
cases would likely be missed or ignored, and lack of sufficient budgetary allocations for referrals.
There is, therefore, underinvestment in the referral hospitals as well as primary facilities,
which should be able to absorb and act as a filter for patients so that attention can be given to
emergency treatment.

Health governance outcomes that have an adverse impact on patient safety

Health governance can be understood in two ways: governance at the clinical level, which is
relational in nature; and governance at the macro level, which is hierarchical in nature. Bodolica,
Spraggon, and Tofau have defined hierarchical governance as ‘the macro level policy framing and
coordination efforts, which occur through administrative top-down decision making, resource
allocation, and controlled planning and administration’ and relational governance as ‘associated
with micro-level mechanisms aimed at facilitating interactions via reciprocity, trust, altruism,
solidarity and shared norms that are embedded in patient–physician relationships.’17 They argue
that these two levels of governance have traditionally been considered separately from each
other.
However, in order for patient safety to be enhanced, the interactions and interrelationship
between the two levels of governance need to be synchronised. A unified and holistic govern-
ance structure needs to be developed.The implications of this approach are that decisions that
are made at the macro governance level have to be sensitive to the decisions that are bound to
be made at the micro governance level. Similarly, it also implies that the challenges at the micro
governance level can be attributed to challenges faced at the macro governance level. A good
illustration would be in the area of resource allocation and distribution in health care. Resources
are needed within the hospital setting to enhance patient safety. Governments have tradition-
ally been resource allocators and distributors. However, if the government does not allocate
adequate or sufficient resources to health facilities, this would hamper patient safety efforts. I
argue that overemphasis on the relational aspects of governance at the expense of hierarchical
aspects, may fail to address the root causes of harm within hospital settings in Kenya.
One major disadvantage of the hierarchical governance approach is that there can be a
detachment from the micro-level challenges for the physician–patient relationship. For exam-
ple, patient preferences and views may not be taken into account.18 It also may fail to take into
account the effect of policies, allocation decisions, budgeting, etc. on relational governance
issues.

16 Kariri James Kamau, Ben Onyango-Osuga, and Susan Njuguna,‘Challenges Facing Implementation of Referral
System for Quality Health Care Services in Kiambu County, Kenya’ (2017) 4(1) Health Systems and Policy
Research 48.
17 Virginia Bodolica, Martin Spraggon, and Gabriela Tofan,‘A Structural Framework for Bridging the Macro-Micro
Divide in Health-Care Governance’ (2016) 19(4) Health Expert 790–804, 791.
18 ibid 791.

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Challenges of devolution as a governance framework to quality service

delivery and patient safety in public health facilities in Kenya
The Constitution of Kenya 2010 introduced a decentralised mode of governance that created
two levels of government – the national government and county governments19– which were
meant to be ‘distinct and interdependent and shall conduct their mutual relations on the basis of
consultation and cooperation.’20 The objects of devolution are mainly to enhance self-govern-
ance and participation of the citizens in the decisions that affect them. Devolution is intended
to enhance access to services as well as the quality of service delivery.21 It is also intended
to increase transparency, accountability, and citizen participation. The Fourth Schedule of the
Constitution sets out the functions of both the national government and county governments.
When it comes to health, the county governments are in charge of ‘county health facilities and
pharmacies,’‘ambulance services,’ and ‘promotion of primary care.’22 The national government is
to be in charge of national referral health facilities and formulation of health policy.23
The intentions of increased access to services and enhancing the quality of service delivery,
noble as they may have been, have faced numerous challenges due to assumptions that were
made about devolution and service delivery, and the manner in which devolution has been
implemented. Health services were devolved to the counties in 2013, in a move that can be
deemed to be more politically motivated than aimed at efficient delivery of service to the peo-
ple.A seven-year transition was provided for in the Constitution from the time of its promulga-
tion in 2010. However, the President declared functions devolved in June 2013. If the criteria
in the Transition to Devolution Act24 are anything to go by, the counties do not seem to have
been prepared for the full devolution of health services. In order for any function to be devolved,
there needed to be an existing legislative framework for the function, a framework for service
delivery in order to implement the function, the prior undertaking of a capacity assessment,
evaluation of whether there is adequate infrastructure and financial systems in place, and an
approved plan.25 This was not adequately done when health services were devolved, prompt-
ing litigation on the issue.26 There were no guidelines on the structures, roles, and mandates of
the county government health sector management; the county health management teams did
not have the necessary capacity and skills to conduct their roles, such as strategic planning and
drawing up of budgets; there were conflicts between the national government and county gov-
ernments; the appointment of officials was largely dominated by nepotism, ethnicity, and intense
lobbying; and there was lack of clarity of the roles of the county health management team and
the other county government departments such as county treasuries and county public service
boards.27

19 There are 47 county governments as specified in the First Schedule of the Constitution of Kenya, 2010.
20 Constitution of Kenya, 2010 Article 6(2).
21 Constitution of Kenya 2020,Articles 174 and 175.
22 Fourth Schedule, Part 2(2)(a) to (c), Constitution of Kenya 2010.
23 Fourth Schedule, Part 2(23) and (28), Constitution of Kenya 2010.
24 Transition to Devolution Act No 1 of 2012.
25 See section 24 of the Transition to Devolution Act 2012.
26 Republic v Transition Authority & Ano Ex parte Kenya Medical Pharmacists and Dentists Union and 2 Others.
27 KEMRI Policy Brief,‘Early Experiences and Effects of Health Sector Devolution in Kenya’ (February 2018) https
://resyst.lshtm.ac.uk/resources/early-experiences-and-effects-of-health-sector-devolution-in-kenya accessed 14
October 2020.

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Aspects affected by devolution that are bound to affect patient safety

The management and working conditions of healthcare workers
One specific area that the devolution of health services significantly affected is the human
resources for health. Health workers are an essential component of any health system. Their
well-being and safety in the workplace have a direct and significant effect on the manner in
which they treat patients, deliver health services, and ensure patient safety. Studies have been
conducted that link the working conditions of healthcare workers with patient care.28 Hickam
et al. explain working conditions as entailing ‘workforce staffing, workflow design, personal/
social factors, physical environment and organisational factors.’29 The health sector is a ‘high-risk,
high-demand, high-stress industry.’30 Health workers are subjected to ‘fast paced environments
which have high physical work demands and require constant mental astuteness to oversee the
needs of fragile, complex, compromised, very ill people, often in unpredictable settings.’31 Sokas
et al. argue that a safety culture where the health and well-being of healthcare workers and
patients are integrated would enhance patient safety by creating ‘savings in workers’ compensa-
tion costs, lower staff turnover, improved staff morale, increased patient satisfaction and fewer
patient adverse events.’32 The work environment must be conducive33 for the health worker to
be able to deliver quality services that will enhance patient safety and reduce any form of harm
to the patient. Conductivity also goes to such issues such as collegiality with other workers, a
participatory approach to decision making, adequate supervision from supervisors, objective
performance appraisals, and promotion based on merit and skill.
In Kenya, the prioritisation of the demand side of health services has been the traditional
focus. Investments and resources have been made with patients in mind. The interests and the
needs – both physiological and especially psychosocial – of healthcare workers have largely
been sidelined.This has had a profound effect on patient safety.The COVID-19 pandemic has
reopened the discussion on the interlinkage between healthcare worker safety and patient safety
in Kenya. Preliminary studies at the onset of the COVID-19 pandemic showed that properly
used and quality-tested personal protective equipment by healthcare workers can effectively
safeguard them from getting infected with COVID-19.This will in turn enable them to prevent
infection to patients.34 By the beginning of August, Kenya had recorded over 250 cases of health
workers in public hospitals who had contracted the virus, with the Ministry of Health attribut-
ing these numbers to the high number of patients who were also testing positive for the virus.35

28 DH Hickam et al., ‘The Effect of Health Care Working Conditions on Patient Safety: Summary’ (2003) www
.ncbi.nlm.nih.gov/books/NBK11929/ accessed 2 June 2020; see, also,Wagner et al. (n 6).
29 Hickam et al. (n 28).
30 Joseline Sikorski,‘Connecting Worker Safety to Patient Safety:A New Imperative for Healthcare Leaders’ (2009)
Ivey Business Journal https://iveybusinessjournal.com/publication/connecting-worker-safety-to-patient-safety
-a-new-imperative-for-health-care-leaders/ accessed 14 October 2020.
31 ibid.
32 Rosemary Sokas et al., ‘Frontline Hospital Workers and the Worker Safety/Patient Safety Nexus’ (2013) 39(4)
The Joint Commission Journal on Quality and Patient Safety 185, 186.
33 ibid.
34 Kangqi, Ng et al., ‘COVID-19 and the Risk to Health Care Workers: A Case Study’ (2020) Annals of Internal
Medicine L20-1075 www.ncbi.nlm.nih.gov/pmc/articles/PMC7081171/ accessed 15 October 2020.
35 See Kjoki Kihiu,‘186 Health Care Workers Positive for COVID-19 in Kenya’ www.capitalfm.co.ke/news/2020/
07/186-health-care-workers-positive-for-covid-19-in-kenya/ (Capital FM, 1 July 2020) accessed 14 October
2020; see, also, Felix Tih,‘Kenya: 250 health works infected with COVID-19’ AA (8 July 2020) www.aa.com.tr/
en/africa/kenya-257-health-workers-infected-with-covid-19/1903926 accessed 14 October 2020. At Pumwani

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However, health workers have complained that they do not have adequate personal protective
equipment (PPE) or that the ones that are supplied are of a substandard quality, putting both
the healthcare workers and the patients’ safety in jeopardy. The stress and strain to healthcare
workers has further been exacerbated by the corruption in the procurement of the PPEs and the
manner in which money allocated to strengthen measures to combat the COVID-19 pandemic
in Kenya has been utilised.
In order to meet the shortfall of healthcare workers, the Ministry of Health planned to
recruit an additional 5000 healthcare workers. However, even this move has caused conflict
between the Council of Governors and the Ministry of Health, with the former arguing that the
counties are legally meant to be the ones to conduct the recruitment exercise.This meant that
the recruitment was put on hold, leaving the already fragile, overworked, and overloaded public
health sector workers at risk of fatigue and burnout.
The regulatory and policy framework in Kenya that seeks to protect working conditions of
workers needs to take an integrative and collaborative approach that will take into account issues
related to the occupational safety and health of workers. In this case, the regulatory and policy
framework for healthcare workers needs to take into account the interrelationship between
worker safety and well-being on the one hand and patient safety and well-being on the other.
The occupational safety and health of healthcare workers needs to cover all facets of their well-
being, including their psychosocial well-being, which is currently neglected.Work-related stress
and burnout amongst healthcare workers are not currently receiving the priority within policy
frameworks as they should.
Apart from the lack of proper equipment and infrastructure in their working environment,
healthcare workers have also faced challenges in remuneration.According to McCoy et al.,‘pay
and income have been described as hygiene factors that affect motivation, performance, morale,
and the ability of employers to attract and retain staff.’36 They argue that when healthcare work-
ers are not remunerated adequately, they would moonlight and even extort money from patients
and engage in other corrupt practices, such as theft of medical supplies and medication to sell
privately. In Kenya, issues of remuneration and collective bargaining processes have been an
ongoing challenge leaving health workers feeling demotivated and frustrated.The delays in sala-
ries, as well as in the conclusion of collective bargaining processes, have led to strikes or threats
of strikes. The feelings of dissatisfaction have in many cases eventually led to health worker
migration to better-paying jobs and this in turn causes a shortage in health facilities.The ripple
effect that this has is that patients do not have the benefit of quality attention by the overworked
and overloaded and stressed healthcare workers. The stress, fatigue, and burnout as a result of
overwork can cause healthcare workers to have compassion fatigue and indifference towards

Maternity Hospital, the largest public maternity hospital in the country, 41 healthcare workers tested positive for
COVID-19 in mid-July.
36 David McCoy et al., ‘Salaries and Incomes of Health Workers in Sub-Saharan Africa’ (2008) 371(9613) The
Lancet 675–81.

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patients37 resulting in patient harm. Health workers are thus bound to be rude, unsympathetic,
and neglectful towards patients, leading to litigation around human rights violations of patients38.
The improvement of working conditions (infrastructure, equipment, medical supplies, and
organisation structure) and remuneration of health workers in public health facilities is a hierar-
chical governance issue.There are decisions, policies, and programmes that have to be developed
and implemented at a macro level in order to influence the working conditions at the micro
level.The failure to address these issues leads to consequences that have a significant bearing on
patient safety in those health facilities. One such consequence is industrial action by healthcare
workers.
Since the promulgation of the Constitution of Kenya in 2010, the country has experi-
enced some of the worst and most prolonged strikes by public sector healthcare workers in the
country’s history.The promises that the Constitution and devolution made were simply that –
promises. But the delivery of the same was not felt, especially by healthcare workers.The threat
of strikes still continues even with the current COVID-19 pandemic with healthcare workers
protesting the lack of protective equipment, testing kits, risk allowances, and psychosocial sup-
port. Other issues that have led to strikes among healthcare workers in Kenya since the devo-
lution of health services took place include failed collective bargaining processes, inadequate
and delayed remuneration, high workload and overwork, lack of equipment, infrastructure and
supplies, lack of promotions, failure to manage their retirement benefits and plans, and lack of
managerial autonomy.

Health fnancing, planning, budgeting, and allocation

The macro processes of financing, planning, budgeting, and allocation may not at first glance,
seem to have anything to do with patient safety. However, a closer scrutiny of how these pro-
cesses affect the working environment and operational culture within health facilities would
lead to an understanding of the connectivity between macro decisions and micro decisions and
processes at the health facility level. Upon devolution, challenges were encountered in align-
ing the planning and budgeting processes.There were also delays in undertaking routine tasks
due to the recentralisation of financial management functions. This led to the frustrations of
frontline workers who could not access funds for needed supplies which had run out.Also, user
fees which were collected at the health facility level now have to be deposited in the County
Consolidated Revenue Account. Health facilities do not have ready access to those and have to
wait for disbursements for recurrent expenditure, leading to delays and frustrations for health
facility managers and health workers who may urgently need supplies to attend to patients.The
new operational structure also meant that there was lack of clarity of roles in terms of who was
responsible for the welfare of healthcare workers, and who was responsible for their in-house
training and career progression as well as intercounty transfers, again leading to frustration and
dissatisfaction among workers.This affects the quality of services rendered to patients.

37 Donald A Kokonya, John M Mburu, Dammas M Kathuku, DM Ndetei et al., ‘Burnout Syndrome Among
Medical Workers at Kenyatta National Hospital’ (2014) 17 Journal of Psychiatry 6; Rael Wahu Gichara,‘Burnout
in Nurses at a Referral Hospital in Western Kenya (2017) 7(11) International Journal of Academic Research in
Business and Social Sciences, 1; Benyam W Dubale, Zeina Chemali, John Denninger et al., ‘Systematic Review
of Burnout Among Health Providers in Sub-Saharan Africa’ (2019) 19 BMC Public Health 1247; DM Ndetei,
M Pizzo, H Maru, FA Ongecha, LI Khasakhala,V Mutiso, DA Kokonya ‘Burnout in Staff Working at the Mathari
Psychiatric Hospital’ (2008) African Journal of Psychiatry 199.
38 JOO (also known as JM) v Attorney General & 6 Others (2018) eKLR.

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Another aspect that has been affected by planning, budgeting, and allocation under devolu-
tion is essential medicines and medical supplies (EMMS) management. Before devolution, health
facilities were the procuring agents of EMMS. Under devolution, the county governments are
now the procuring agents.This has led to challenges in the turnaround time for orders resulting
in long periods of time for commodity stock-outs. Stock-outs have also been caused by refusal
by the Kenya Medical Supplies Agency (KEMSA) to supply medicines and medical supplies to
counties as a result of the high debts owed by the counties.39 Some county governors have failed
to prioritise EMMS and have instead chosen to focus on the acquisition of assets which will give
them political mileage, such as ambulances.The crisis of constant stock-outs of medical supplies
and medicines has led to patients being referred to private chemists and pharmacies which are
too expensive and unaffordable for many of them.This compromises their safety and health.
The quality of service delivery and patient safety in public health facilities depends largely
on the amount of resources (including financial resources) that are allocated to them.This will
determine, among many things, the number of personnel that can be hired, the medical equip-
ment and infrastructure, opportunities for training, how much investment is made, and how
priorities are set in the health sector and matters of patient safety.
As stated earlier in this section, devolution as a model of governance was intended to enhance
the quality of service delivery.The implication of this is that citizens could expect better patient
safety outcomes. However, the manner in which devolution has been implemented has cre-
ated room for adverse patient safety outcomes. The next section will discuss the manner in
which taking a human rights governance approach to patient care can advance the patient safety
agenda in Kenya.

Human rights–based approach to patient care as a

governance model in public health facilities
The concept of adverse events within healthcare settings can be construed in a wider way to
embrace violations of patients’ health and health-related rights, which in turn compromise
their safety. Patient safety, as discussed earlier in the chapter, is a concept that moves beyond the
avoidance of errors in the clinical setting and considers the holistic well-being of the patient.
Upholding the dignity of the patient improves their overall well-being. The question is: How
does the protection of the human rights of patients enhance their safety?
Peled-Raz makes an argument for a ‘human rights in patient care’ approach to patient safety.
This approach is proposed in order to provide remedies for the systemic and underlying causes
of patient harm and mistreatment. She defines patient care as ‘the prevention, treatment and
management of illness and the preservation of physical and mental well-being through services
offered by health professionals (or non-professionals under their supervision).’40 Good care is not
merely about skilled and competent care by health professionals; it is also about respecting the
human rights of patients.

39 Joan Kariuki, Mercy Karimi Njeru, Watu Wamae, Maureen Mackintosh, ‘Local Supply Chains for Medicines
and Medical Supplies in Kenya: Understanding the Challenges’ (2015) African Centre for Technology Studies
Inclusive Bioeconomy Programme Working Paper No. 001/2015; see Collins Omulo,‘Nairobi Faces Crisis over
Shortage of Medicines’ Business Daily (27 March 2019) www.businessdailyafrica.com/news/counties/Nairobi-
faces-crisis-over-shortage-of-medicines/4003142-5045100-vqfe1p/index.html accessed 14 October 2020.
40 Maya Peled-Raz, ‘Human Rights in Patient Care and Public Health – A Common Ground’ (2017) 38 Public
Health Reviews 29.

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Human rights in patient care can be seen as a viable alternative to the patient rights move-
ment, which embraces a more consumerist ethos and perhaps is narrower in its scope, to provide
adequate remedies for patient harm.The patient rights movement bases obligations to patients
on the law of contract and tort, a breach of which could lead to civil action.Whereas these have
had and still do have a place in the promotion of the interests of patients and have even led to the
development of protocols to enhance patient safety in the private sector, their utility in the pub-
lic sector is not felt as much. Indeed, the law of tort, where a medical negligence claim would
be brought under, serves a corrective justice function which is intended to compensate the
patient and restore them to their original position before the injury complained about. It serves
a deterrence function. However, whether medical negligence and malpractice claims would
enhance patient safety is debatable.41 As a result of the potential threat of litigation, healthcare
providers are bound to practice defensive medicine, defined as ‘departing from normal medical
practice as a safeguard from litigation.’ Defensive medicine exposes patients either to too many
unnecessary diagnostic, testing, and treatment procedures (positive defensive medicine) or avoids
risky treatments which may otherwise be beneficial to patients in order to reduce the chances
of litigation (negative defensive medicine). Apart from that, it also has the potential to increase
healthcare costs for the patients who have to pay more for tests and hospital admissions42 and
also for the healthcare providers whose premiums may go up thus causing them to charge more
for services provided for patients. For patients with insurance cover in Kenya, the risk of being
admitted unnecessarily in hospital is very high.43 This not only harms the patient psychologi-
cally but also economically, as their premiums are bound to increase.The fear of litigation may
cause heightened levels of anxiety and depression amongst health professionals due to the repu-
tational damage that court cases can have. It can also deter health professionals from disclosing
and recording errors.
Peled-Raz sets out two major limitations of the patients’ rights approach. Firstly, it focuses
too much on patients and leaves out the other stakeholders who also contribute towards the
safety of the patient (e.g. healthcare workers). Secondly, it focuses on the clinical relationship
between the patient and the healthcare provider, which hinders the consideration of other ele-
ments outside of that relationship which may influence or even cause violations of the rights of
the patient. She argues that

when the (healthcare) system is designed – deliberately or not – in a way that is set
to infringe on human rights, the patients’ rights doctrine will provide no assistance. A
patient cannot claim an infringement on his right as a patient when he is not receiv-
ing equal care, due to lack of a nationally funded health plan, nor can he protest his
patients’ rights breached when a state law requires the physician to notify the authori-
ties of his medical condition.

41 See Michelle M Mello, Michael D Frakes, Erik Blumenkranz, and David M Studdert,‘Malpractice Liability and
Health Care Quality: A Review’ (2020) Clinical Review and Education 352;Toyen A Brennan and Michelle M
Mello,‘Patient Safety and Medical Malpractice:A Case Study’ (2003) 139(4) Annals of Internal Medicine 267–73;
M Sonal Sekhar and N Vyas ‘Defensive Medicine: A Bane to Healthcare’ (2013) 3(2) Annals of Medical Health
Science Research 295.
42 Hospitals may have a tendency to carry out positive defensive medicine on patients with insurance coverage,
which would also raise the premiums for the patients concerned.
43 See the scandal concerning The Nairobi Womens Hospital that had a policy of having a daily quota admission for
patients, even when it was not necessary in order to gain more profits.

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A human rights to patient care approach enables multiple stakeholders and their roles to be
considered in the discussion about patient safety and quality of care. It also seeks to address the
systemic causes of mistreatment of patients that lead to a violation of patient safety. A rights-
based approach to patient safety in Kenya would be hinged on the constitutional provision of
the right to the highest attainable standard of health.

Situating patient safety within the right to health framework

The ultimate responsibility for ensuring patient safety lies with the state.This is the import of
constitutionalising the right to health within the Bill of Rights of the Constitution of Kenya
2010 and of the ratification of the International Covenant on Economic, Social and Cultural
Rights (ICESCR). The right to the highest attainable standard of health as set out in the
ICESCR has been constitutionalised within the Bill of Rights of the Constitution of Kenya,
2010.44 This effectively makes it a judicially enforceable right that would invoke sanctions should
it be violated.45 One of the most authoritative interpretations provided of the right to health is
as set out by the Committee on Economic Social and Cultural Rights.46 The committee, in set-
ting out the meaning of the right to health, has expressed that any interpretation of the right to
health must take into account its inclusive nature and that it has integrated other rights within
its framework. It also entails freedoms and entitlements, for example, freedom from violations
that may compromise patient safety such as non-consensual treatment, torture, inhuman and
degrading treatment, as well as discrimination.47 Patient safety from the lens of the right to
health also entails the social and underlying determinants of health.48 These have been defined
as ‘the non-medical factors that can affect a person’s overall health and health outcomes.’49 The
Commission on Social Determinants has also defined them as ‘the conditions in which people
are born, grow, work, live, age, and the wider set of forces and systems shaping the conditions
of daily life.’ Daniel, Bernstein, and Kane posit that social determinants are an ‘important com-
ponent of the physician’s role as an advocate for patients and a steward of medical care’50 and
therefore patients should be screened for the underlying determinants that could be affecting
their health, and those that would affect their ability to access healthcare and to continue seek-
ing healthcare services.The underlying determinants that are likely to have an impact on patient
safety are access to clean and safe water, sanitation, safe and healthy working conditions, and
socio-economic conditions.
The right to health also entails the availability, accessibility, acceptability, and quality (AAAQ)
framework. Patient safety can then be evaluated in light of this framework.

a. Availability entails that a state should have functioning healthcare facilities with suf-
ficient goods, services and programmes that will serve patients. There must also be a

44 Article 12 of the ICESCR.

45 The Constitution of Kenya 2010 in article 20(1) provides that the ‘Bill of Rights applies to all law and binds all
State organs and all persons.’
46 General Comment No 14 on the Right to the Highest Attainable Standard Health.
47 ibid para 8.
48 ibid para 11.
49 Hilary Daniel, S Bernstein, and Gregory C Kane, ‘Addressing Social Determinants to Improve Patient Care
and Promote Health Equity: An American College of Physicians Perspective’ (2018) 168(8) Annals of Internal
Medicine 577–78.
50 ibid.

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sufficient supply of essential medicines, trained, competent and professional health per-
sonnel who are motivated in their work. The underlying determinants of health, such
as safe water, good sanitation, nutritious food, etc., should also be available in adequate
amounts.
In Kenya, this aspect of the right to health faces a number of challenges, particularly
upon devolution of health services. Many health facilities are operating with very little
autonomy and funds to carry out daily operations. Many are in debt, without amenities
such as electricity and water, and there is poor sanitation and hygiene. The lack of these
basic amenities increases the risk of hospital-acquired infections for patients, compromising
their safety.
There are also shortages of essential medicines, with patients being referred to private
pharmacies to acquire even the most basic of drugs. The inflation of medication in some
public hospitals has also contributed to the non-availability of this essential aspect that
should enhance patient safety. A recent study showed that patients suffering from non-
communicable diseases are especially vulnerable. Many of these essential medicines are
not available in government facilities, where they would be cheaper. Patients end up being
referred to specific private pharmacies where the cost of the medication may be restrictive
for them.
Since the inception of devolution of health services in 2013, there has been a human
resource challenge at the county level, in terms of capacity, and conflicts between the roles
of county and national governments in governing health personnel. The unsafe working
conditions, coupled with the dissatisfaction among health workers as to their remunera-
tion, allowance, and promotion packages have led to a myriad of strikes in the health sector.
Since independence, there have never been as many strikes as there have been since devo-
lution.These strikes have had a profoundly negative effect on patient safety, with patients
dying or suffering significant irrecoverable harm to their health as a result of not being
attended to.The COVID-19 pandemic has made the situation worse for patients, particu-
larly those who are suspected of having the coronavirus and who are not being attended to
upon arrival at health facilities due to healthcare workers not having the necessary personal
protective equipment (PPE).
Public health facilities also have challenges in infrastructure and medical equipment. A
recent deal that was entered into for the procurement and distribution to the counties of
medical equipment has not yielded the desired results.This is because the deal was shrouded
in corruption and secrecy, leading to escalated costing of items.A needs assessment was not
carried out per county resulting in some counties receiving equipment that they do not
need, or not having the requisite personnel to handle or operate the equipment.This means
that patients do not get the benefit of better-quality services.
The global COVID-19 pandemic has exposed the weaknesses that plague the public
health sector in Kenya and how patients can then have their safety compromised.An audit
of the health system reveals that testing kits, isolation units in hospitals, beds, ICU beds
and equipment, and PPE for healthcare workers are in very low supply.There are instances
where patients have been turned away from public facilities as a result of a lack of available
space or treatment kits.
b. Accessibility means that health facilities, goods, and services together with the social and
underlying determinants of health should be accessible to patients in a manner that meets
the following criteria:
(i) It must be without discrimination.

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Discrimination can be based on several social, economic, and even political factors. Health
services should be available to the marginalised and vulnerable and socially excluded such
as transgendered patients, intersex, and patients of same-sex orientation.There should be no
discrimination on any prohibited ground.This aspect is a core obligation of the state that
is not resource-dependent.
(ii) It must be physically accessible.
Health facilities should be within safe reach for patients, especially for those who are
marginalised, vulnerable, of ethnic minority, living with disabilities, adolescents, older
persons, and persons living with HIV.The accessibility of the health facility is not merely
about geographical distance, but also about the infrastructure that allows access to that
health facility. It means that the state of roads and the means of transport also need to be
accessible. Many Kenyans, in both urban informal settlements and rural areas, depend on
public transportation to get to their destinations.Access to public transportation may not
be as much as a challenge to the urban dweller as it may be for many patients in rural
areas.51 Some investments by the counties in properly fitted and functioning ambulances
need to be done.These factors will determine whether patients will seek services within
health facilities or will seek alternative means of treatment, e.g. traditional healers. Some
patients unfortunately die or even have their health irreversibly damaged as a result of
the delays in getting to a health facility.The challenge that has been faced by Kenya is the
corruption in the procurement processes that diverts much needed financial resources
to private use.
There also should be access to the underlying determinants of health, as well as proper
access to buildings and amenities. Specific inclusive programmes and strategies need to
be put in place for persons with disabilities.These strategies will be dependent on which
model of disability is being considered, i.e. the medical model or the social model. Both,
it is argued, should be borne in mind when formulating these plans and programmes for
persons with disabilities. In low- and middle-income countries in sub-Saharan Africa, chil-
dren living with disabilities are among the vulnerable groups that need questions of access
to healthcare addressed.52
(iii) There should be economic accessibility.
The rising cost of healthcare in Kenya has rendered many households bankrupt or in dire
financial straits. However, in order to enhance patient safety, there must be equity and
affordability of health services, where poor households are not ‘disproportionately bur-
dened with health expenses as compared to richer households.’
For Kenya, the question of economic accessibility is to be addressed by way of universal
health coverage (UHC), which is part of the Big Four Agenda of the government, as well
as the government blueprint for development – the Vision 2030.

51 Veronica Escamilla, Lisa Calhoun, Nobert Odero, and Ilene S Speizer,‘Access to Public Transportation and Health
Facilities Offering Long-Acting Reversible Contraceptives among Residents of Formal and Informal Settlements
in Two Cities in Kenya’ (2019) 16 Reproductive Health 161.
52 Molalign B. Adugna, Fatima Nabbouh, Selvia Shehata, and Setareh Ghahari, ‘Barriers and Facilitators to
Healthcare Access for Children with Disabilities in Low and Middle Income Sub-Saharan African Countries: A
Scoping Review’ (2020) 20 BMC Health Services Research 15.

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 Naomi N Njuguna

The definition of UHC is

That all people and communities can use the promotive, preventive, curative, reha-
bilitative and palliative health services they need, of sufficient quality to be effective,
while also ensuring that the use of these services does not expose the user to financial
hardship.53

The three main tenets of UHC are equity, quality, and affordability.

Kenya decided to use some counties as flagship counties for the roll-out of the UHC
programme. However, despite the noble intention of the government in having this pro-
gramme that would benefit its citizens, especially the poor and marginalised, several teeth-
ing problems have emerged. Mbau et al.54 highlight some of these issues.There have been
upward revisions of premiums without the knowledge and prior notification of patients.
Therefore, patients arrive at health facilities but cannot receive treatment or obtain services
and are referred back to the NHIF offices.The affordability of the new rates for the urban
and rural poor is a significant challenge. Some key patient populations have suffered harm
as a result of not receiving the information about which facilities they should seek treat-
ment from or the revised rates of premiums.These populations are the elderly, patients with
disabilities, the illiterate, the poor in rural and marginalised areas, and the unemployed.
They had poor access to media platforms where communication on the essential benefits
package and where they can access these services could be relayed.The UHC roll-out in
Kenya, noble though it may be, has not seen an increase in resources, infrastructure and
equipment, healthcare workers particularly specialists, medicines. and medical supplies.This
may further discourage patients from seeking services in health facilities where they will
not get the services they need.
(iv) There should be information accessibility.
As part of patient safety, health information should be readily accessible. It is the right of
the patient to seek, receive, and impart information and ideas concerning health issues.55
Accessibility of information is dependent on effective and efficient storage and retrieval
methods. The ethical principle of veracity (truthfulness) and confidentiality should be
adhered to.The adherence to these principles encourages patients to seek medical services
with confidence knowing that their dignity and autonomy will be protected. Access to
information also ensures the proper management of patients by the health team. It reduces
medication and diagnostic errors, and improves patient monitoring and evaluation as the
patient recovers.
c. Acceptability entails the respectful use of medical ethics as the use of culturally appropri-
ate methods of attending to patients. Adherence to the principles of medical ethics, i.e.
autonomy, confidentiality, justice, beneficence, and non-maleficence, among many other
contemporary ones, significantly enhances patient confidence in seeking health services.

53 See WHO, ‘Health Financing’ www.who.int/health_financing/universal_coverage_definition/en/ accessed 14

October 2020.
54 Rahab Mbau, Evelyn Kabia, Ayako Honda, Kara Hanson, and Edwine Barasa, ‘Examining Purchasing Reforms
Towards Universal Health Coverage by the National Hospital Insurance Fund in Kenya’ (2020) 19 International
Journal for Equity in Health 19.
55 The Constitution of Kenya, 2010, in Article 35(1) provides for the right to access information that is held by
another person and required for the exercise of protection of any right or fundamental freedom.

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Culture has been described as ‘personal identification, language, thoughts, communica-

tions, actions, customs, beliefs, values and institutions that are often specific to ethnic, racial,
religions, geographic or social groups.’56 Culturally appropriate healthcare involves culture
competence, which enhances patient engagement and communication. For instance, it may
be considered culturally inappropriate in some cultures for a female to be attended to by
a male doctor. It would also mean taking into account different aspects of social identity
such as sexual orientation, disability, and socio-economic status.Therefore, acceptability and
patient safety means that healthcare workers need to be culturally sensitive to their patients.
d. Quality means that health practitioners are using scientifically and medically appropriate
methods to treat patients. Patient safety is enhanced when there is no malpractice or negli-
gence involved. Quality also means that other determinants of health need to be considered
and made accessible in the provision of health services. For instance, hygiene and good
sanitation, potable water, food, and nutrition. Health facilities need to be regularly audited
and assessed to ensure that they keep within set standards of quality assurance.57

Conclusion
It is important that patient safety and quality health services be on the agenda of health policies,
programmes, and governance.58 Environments where patients face harm affect the public health
burden and also affect the reputational value of the public health sector, with many patients
preferring to seek alternative health services, even if they are far from them. Public perception
of health facilities is influenced by how ‘safe’ patients feel in those facilities.
Patient safety and quality are important in shaping the delivery of health services in low- and
middle-income countries. There should be a move from a mindset of mere access to health
services to a mindset of quality and safety using a multi-sectoral approach to examine the
‘underlying systemic issues affecting patient safety, to share experiences in addressing barriers
and creating solutions to strengthen systems and improve practices.’59
Situating patient safety within a right to health framework entails holding the state respon-
sible for governance outcomes that influence patient safety.The Constitution of Kenya provides
that ‘The State shall take legislative, policy and other measures, including the setting of standards
to achieve the progressive realisation of the rights guaranteed under Article 43.’60

56 Patient Safety Network, Cultural Competence and Patient Safety (Patient Safety Network, 27 December 2019) https
://psnet.ahrq.gov/perspective/cultural-competence-and-patient-safety accessed 24 June 2020.
57 Kenya has developed a Joint Health Inspections Checklist (2014) as part of checking quality of health facilities
in order to enhance patient safety.
58 WHO ‘Universal Health Coverage and Patient Safety and Quality: Understanding the Central Role of PSQ in
UHC through Practical Experience in Low and Middle Income Countries’ (WHO 2014) www.wonca.net/s
ite/DefaultSite/filesystem/documents/resources/UHC-PSQ%20Learning%20Lab%20Doc_Final%20Issued.pdf
accessed 14 October 2020.
59 WHO ‘Global action on patient safety for achieving effecting universal health coverage’ (Seventy-first World
Health Assembly side event) available at https://www.who.int/patientsafety/SummaryReport_WHA71_PSU-si
de-event.pdf accessed 14th October 2020. It should also be noted that when the social and underlying determi-
nants of health are taken into account in ensuring patient safety, a multi-sectoral approach to regulation, policy,
practices, and programmes, is inevitable.The stakeholders concerned are country leaders, policy makers, experts,
civil society, and NGOs as well as patient advocacy bodies.
60 Constitution of Kenya 2010,Article 21(2).

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 Naomi N Njuguna

The state, in respecting, protecting, promoting and fulfilling the right to health61 should be
held accountable for the following:

(i) Effective planning, budgeting and distribution of resources that affect the operational cul-
ture of health facilities which influence patient safety.
(ii) The hiring of more health personnel, particularly specialists, and training them on how to
effectively manage all facets of patient safety.
(iii) Putting into place policy frameworks and laws that will enhance patient safety.
(iv) Ensuring transparency, accountability and public participation in the management of health
facilities and management processes.
(v) Ensuring access to judicial remedies beyond damages for medical malpractice and negli-
gence.The remedies should seek to address the underlying causes of the errors and adverse
events in health facilities.

By using a human rights–based approach, the view of patient harm is seen beyond the making
of clinical errors and seen from the lens of violations of patient rights in hospital settings.These
violations are as a result of various macro aspects of governance which are not managed properly.
By dealing with these macro issues, the positive outcomes can influence patient safety perspec-
tives and outcomes at the clinical level.

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 13
DEVELOPING AN INTRINSIC
PATIENT SAFETY CULTURE
IN HEALTH SYSTEMS
The NHS experience

John Tingle

It is disingenuous for any country to say that its citizens have a human right to health and then
to provide poor quality and unsafe care. A key component of the right to health is that it must
be safe and effective and does no harm, otherwise the right can be seen to be negative and hol-
low. An important measure of a country’s commitment to health rights is the safety and qual-
ity of the healthcare services delivered. A right to health cannot exist in the abstract: viewing
the country’s environment and context of healthcare delivery is fundamental to ascertaining
whether there is an effective right to health. It is easy for a country to say ‘we recognise a right
to health,’ but when it comes down to actual delivery of services, and patients cannot access
them or they are delivered unsafely, then the right is called into question. The World Health
Organization (WHO) states that ‘quality is a key component of Universal Health Coverage and
includes the experience as well as the perception of health care.’This focus on quality includes
ensuring that health services are both safe (‘avoiding injuries to people for whom the care
is intended’) and effective (‘providing evidence-based healthcare services to those who need
them’).1 A human right to health is meaningless if safe and quality healthcare is not viewed as a
core component of it.

Global patient safety

Today, the importance of countries incorporating effective patient safety policies and practices
into health systems has become a fundamentally important global issue and goal. The WHO
has helped drive a global patient safety policy agenda and provided leadership and tools to this
effect.2 The WHO patient safety mission is described as follows:

1 WHO, ‘Human Rights and Health’ (WHO, 29 December 2017) www.who.int/news-room/fact-sheets/detail/

human-rights-and-health accessed 14 October 2020.
2 WHO,‘Patient Safety:About Us’ www.who.int/patientsafety/about/en/ accessed 14 October 2020.

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 John Tingle

to coordinate, facilitate and accelerate patient safety improvements around the world
by being a leader and advocating for change; generating and sharing knowledge
and expertise; supporting Member States in their implementation of patient safety
actions.3

WHO patient safety has embarked upon and delivered several important initiatives, which
include several publications, training, education, campaigns, tools, and conferences. Global activ-
ity on patient safety has included the Multi-Professional Patient Safety Curriculum Guide,4 the Safe
Childbirth Checklist5 and the Surgical Safety Checklist.6 The WHO has also created ‘world patient
safety day’ as an annual event celebrated every 17 September to create a global awareness of
patient safety and to encourage commitment to it.7
Global patient safety activity sits alongside the established and developing practices and poli-
cies of individual countries. Clearly, not all countries are the same in terms of health capacity
and resources. There are going to be obvious differences in a country’s ability to incorporate
and develop WHO guidance and universal health coverage (UHC) effectively and sustainably.
The patient safety work of WHO has propelled the issue onto many countries’ health systems’
agendas and it is now a hard topic to ignore. Awareness of the patient safety issue is only the
first stage in developing an ingrained systemic patient safety culture. The implementation and
outcome of this culture are the next fundamental stages.This chapter will look further at WHO
global patient safety policies and practices and the link to UHC. The United Nations (UN)
strategic development goal (SDG) number three on health (‘[e]nsure healthy lives and promote
well-being for all at all ages’) has also given a boost to the patient safety agenda which will be
explored further in this chapter. How does the SDG impetus sit with patient safety initiatives
and the drive for health quality?8
Additionally, the patient safety experiences of the National Health Service (NHS) England
will be discussed.The NHS has been working on developing a patient safety culture for at least
20 years, since from the publication of the seminal NHS patient safety report An Organisation
with a Memory.9 With this wealth of experience and activity, the NHS is a useful prism from
which to view patient safety developments, policies, and practices. The fundamental question

3 ibid.
4 WHO, ‘Patient Safety Curriculum Guide Multi-Professional Edition’ (WHO 2011) www.who.int/patientsafety/
education/mp_curriculum_guide/en/ accessed 20 October 2020.
5 WHO,‘Before Birth:WHO Safe Childbirth Checklist’ https://apps.who.int/iris/bitstream/handle/10665/199179
/WHO_HIS_SDS_2015.26_eng.pdf;jsessionid=9BE29599068A424F744EFCBC643DFFA8?sequence=1(WHO
2015) accessed 20 October 2020.
6 WHO, Surgical Safety Checklist (WHO 2009) https://apps.who.int/iris/bitstream/handle/10665/44186/97892
41598590_eng_Checklist.pdf?sequence=2 accessed 20 October 2020.
7 World Patient Safety Day (WHO 2020) https://www.who.int/patientsafety/world-patient-safety-day/en/
accessed 11 February 2021. Also see WHO and Patient Safety, Global Patient Safety Action Plan:Towards Eliminating
Avoidable Harm in Health Care (Third Draft, 2021) https://cdn.who.int/media/docs/default-source/integrated-hea
lth-services-(ihs)/psf/gpsap/global-patient-safety-action-plan-2021-2030_third-draft_january-2021_web.pdf?sfvr
sn=6767dc05_13 accessed 11 February 2021.
8 WHO,‘Patient Safety Curriculum Guide: Multi-Professional Edition’ (WHO 2011) www.who.int/patientsafety/
education/mp_curriculum_guide/en/ accessed 20 October 2020.
9 Department of Health, An Organisation with a Memory: Report of an Expert Group on Learning from Adverse Events
in the NHS Chaired by the Chief Medical Officer (TSO 2000) https://webarchive.nationalarchives.gov.uk/2013010
5105027/http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/
DH_4065083 accessed 20 October 2020.

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that can be asked is whether a sophisticated health delivery system, such as the NHS in England,
can be said to have successfully developed an ingrained patient safety system?
It is important to discuss the magnitude of the challenges all countries face when trying to
develop an ingrained patient safety culture.The experiences of the NHS in England can help
identify these challenges and the opportunities that lie ahead for developing, transitioning coun-
tries as well as developed countries.

The global patient safety agenda

The case for global patient safety is made by the WHO and the arguments made are compel-
ling.10 Commendable goals are set by this organisation, but their realism can be challenged
when applied to developing and transitioning countries who are doing their best in the most
challenging of circumstances.The goals create commendable pressures to do the right thing, but
without technical help and funding, these goals may remain merely ambitions and aspirations
for some countries.
The WHO contends that approximately two-thirds of global adverse events happen in low-
and middle-income countries.11 The WHO states that

there have been limited systemic improvements in the safety of health care glob-
ally, and in some situations, efforts made have been unsustained and uncoordinated.
In many countries, health services, where they are available, are of poor quality, thus
endangering the safety of patients, compromising health outcomes, and this leads to
lack of trust of the population in health services.12

The WHO argues that, in order to deal with this issue, there is a need to maintain clear policies,
organizational leadership capacity, and data to drive safety improvements.The WHO also declares
that skilled healthcare professionals are needed.There is also a need for effective involvement of
patients in their care. This, the WHO contends, would go some way to producing sustainable
and significant improvements in the safety of healthcare. The WHO and the Organization for
Economic Cooperation and Development (OECD) have jointly argued that poor quality health
services are holding back progress on improving health in countries at all income levels.13 They
argue that quality of care is fundamental to the implementation of UHC:

But universal health coverage should not be discussed and planned, let alone imple-
mented, without a focus on quality. It is essential to ensure that care is effective, safe,
and in keeping with the preference and needs of the people and communities being
served.14

10 WHO, ‘Patient Safety Fact File, Patient Safety and Risk Management Service Delivery and Safety September’
(WHO 2019) www.who.int/features/factfiles/patient_safety/patient-safety-fact-file.pdf?ua=1 accessed 20
October 2020.
11 ibid.
12 ibid 2.
13 WHO, OECD, and International Bank for Reconstruction and Development/The World Bank, Delivering Quality
Health Services:A Global Imperative for Universal Health Coverage’ (2018) https://apps.who.int/iris/bitstream/handle
/10665/272465/9789241513906-eng.pdf?ua=1 accessed 20 October 2020.
14 ibid 18.

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 John Tingle

UHC and health quality

There are difficulties here with the concept of UHC and health quality in developing coun-
tries. Care quality may be poor, but it might be the only care available in remote regions
where travel is difficult. Clearly, if health facilities are causing more harm than good, they must
be closed. If they are, however, providing safe and effective care, but not of the best quality, and
they are the only caregiver in an area, then adjustments to what is meant by ‘quality’ should
be made.The benchmark is safe and effective healthcare that does not cause harm.To deprive
a remote village or area from essential healthcare facilities is a step that should not be taken
lightly.There should be a global focus on health quality, but what we mean by ‘quality’ needs
to be tempered to suit the context of different countries and their stages of development.The
WHO and OECD deliver, arguably, a hard-line message that developing countries may find
particularly challenging:

Quality is not a prerogative of high-income countries. If countries can afford to pro-

vide any health care – and even the poorest can and should do so – they must provide
care of good quality.The alternative – poor-quality care – is not only harmful but also
wastes precious resources that can be invested in other important drivers of social and
economic development to improve the lives of citizens. Billions of dollars are spent on
the consequences of poor-quality care – money that can fund schools, social services
and infrastructure. And poor quality can also undermine the trust of the population
in the benefits of modern medicine. Seen this way, universal health coverage without
quality of care is a job half done.15

Handling the information and research

There is an impressive array of WHO global patient safety policy guidance for countries to
consider, as well as other international research.We have the information on the need for qual-
ity and, in turn, patient safety, but this information seems, in the case of some countries, to sit
mainly in the top echelons of the health system, at the central management level, and has not
permeated properly down to the workplace. My experiences of healthcare in remote clinics in
East Africa is that clinical staff are willing to consider changes in structure to facilitate greater
quality of care and patient rights, but their efforts are often compromised and frustrated by not
having enough physical resources such as disposable gloves, proper building infrastructure, and
adequate water supply.
At a government level, there is, often, in my experience, knowledge, acceptance, and under-
standing of the WHO patient safety policy agenda and the need for good quality care. A diffi-
culty that I have witnessed is that governments in some health ministries in developing countries
need assigned staff to unpick the data and cascade the policy down into local health systems.
It is, primarily, a staff resource issue. A factor also to consider is that in terms of global patient
safety and health quality, even in developed countries such as England, the quantity of research
is unmanageable, and so an even greater challenge exists in this regard in developing countries.16

15 ibid.
16 CQC, Opening the Door to Change: NHS Safety Culture and the Need for Transformation (CQC 2018) www.cqc.org
.uk/sites/default/files/20181224_openingthedoor_report.pdf accessed 20 October 2020.

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The experience of England: a food of patient safety

policy and implementation papers?
According to the Care Quality Commission (CQC):

Trusts receive too many safety-related messages from too many different sources.The
trusts we spoke to said there needed to be better communication and coordination
between national bodies, and greater clarity around the roles of the various organisa-
tions that send these messages.17

How key patient safety and health quality information is distilled across health systems is clearly
an important global issue. Patient safety and health quality is now an important and large global
service industry with many non-governmental organisations (NGOs) and international organi-
sations maintaining agendas and offering services/advice. Suggested solutions to this problem
and others may be found in the NHS Patient Safety Strategy18 with advances such as The NHS
National Patient Safety Syllabus and patient safety specialists in hospitals and elsewhere.The clari-
fication of a specific patient safety remit by such specialists and as described within this syllabus
will provide practical tools to support a safer environment. Equally, there is much that the NHS
can learn from practices in developed and developing countries in terms of innovation and use
of resources.19
Education and training are fundamental prerequisites to developing an ingrained patient
safety culture in a health system which also puts the patient first. Culture change cannot, how-
ever, be mandated. Sustainable changes in a health system’s culture take time to evolve and it is
an incremental process. NHS England and NHS Improvement state:

Culture change cannot be mandated by strategy, but its role in determining safety can-
not be ignored.‘Just cultures’ in the NHS are too often thwarted by fear and blame.A
consistent message in the consultation responses was that fear is too prevalent across
NHS staff, particularly in relation to involvement in patient safety incidents.20

In discussing global patient safety, health quality, patient rights, and global health systems, it is
important to look for commonalties. It is to be accepted that different countries will have differ-
ent approaches to issues, practices, and policies.There are systemic differences in the delivery of
healthcare services, for example, in the United States (US) and the NHS in England.This book
explores several countries’ approaches to important health care issues and looks for commonal-
ties. A practical benefit of a comparative approach to patient safety, health quality, and human
rights is that what works well in one country could well be viewed as a prospective policy for
another country.

17 ibid 6.
18 NHS England, NHS Improvement, The NHS Patient Safety Strategy: Safer Culture, Safer Systems, Safer Patients
(July 2019) https://improvement.nhs.uk/documents/5472/190708_Patient_Safety_Strategy_for_website_v4.pd
f accessed 11 November 2020.
19 See John Tingle, Clayton Ó Néill, and Morgan Shimwell, Global Patient Safety: Law, Policy and Practice (Routledge
2018).
20 ibid 7.

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 John Tingle

The concept of ‘Never Events’

A good illustration of this patient safety–health quality country alignment can be seen in the
context of ‘Never Events’:

The term ‘Never Event; was first introduced in 2001 by Ken Kizer, MD, former CEO
of the National Quality Forum (NQF), in reference to particularly shocking medical
errors – such as wrong-site surgery – that should never occur. Over time, the term’s
use has expanded to signify adverse events that are unambiguous (clearly identifiable
and measurable), serious (resulting in death or significant disability), and usually pre-
ventable.21

Never Events in patient safety and healthcare are events in healthcare treatment and care that
should never occur. In the NHS, Never Events are defined as ‘serious, largely preventable patient
safety incidents that should not occur if healthcare providers have implemented existing national
guidance or safety recommendations.’22 The concept originated in the US and was imported
into the NHS.The Never Events concept was introduced in High Quality Care For All in 2008.23
According to this report:

In some parts of the United States, events that are serious and largely preventable
such as ‘wrong-site’ surgery have been designated ‘Never Events’, and payment with-
held when they occur. The NPSA [National Patient Safety Agency] will work with
stakeholders in this country to draw up its own list of ‘Never Events’. From next year,
PCTs [primary care trusts] will choose priorities from this list in their annual operat-
ing plan.24

There is an NHS list of Never Events and a policy framework,25 which is regularly updated.
Never Events are reported by NHS England and NHS Improvement monthly, and there are
yearly overviews of trends.26
In considering the differences between Never Events in the US and in the NHS, there is
a punitive context to Never Events in the US in that, if one occurs, there can be no payment
made to the provider of the service.27 This type of payment restriction was also imported into

21 Agency for Healthcare Research and Quality (AHRQ), PS Net (Patient Safety Network, Patient Safety Primer,
‘Never Events’ (September 2019) https://psnet.ahrq.gov/primer/never-events accessed 14 October 2020.
22 NHS England, NHS Improvement, Provisional Publication of Never Events Reported as occurring between 1 April and
30 April 2020, (NHS England, NHS Improvement 2020), https://improvement.nhs.uk/documents/6639/Pro
visional_publication_-_NE_1_April_2020_-_30_April_2020_FINAL.pdf accessed 20 October 2020.
23 Department of Health, High Quality Care For All, NHS Next Stage Review Final Report (TSO 2008) https://
assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/228836/7432.pdf
accessed 20 October 2020.
24 ibid 45.
25 NHS Improvement, Never Events Policy and Framework (NHS Improvement, 2018) https://improvement.nhs
.uk/documents/2265/Revised_Never_Events_policy_and_framework_FINAL.pdf accessed 20 October 2020.
26 The current Never Events list 2018 includes wrong site surgery, wrong implant/prosthesis, retained foreign object
post procedure, mis-selection of a strong potassium solution, administration of medication by the wrong route,
overdose of insulin due to abbreviations or incorrect device, overdose of methotrexate for non-cancer treatment,
mis-selection of high strength midazolam during conscious sedation.
27 Agency for Healthcare Research and Quality (AHRQ), PS Net (Patient Safety Network),‘Patient Safety Primer:
Never Events’ (September 2019). https://psnet.ahrq.gov/primer/never-events accessed 14 October 2020.

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 An intrinsic patient safety culture

the NHS, but was subsequently removed, as the view was taken that it reinforced the concept
of a blame culture:

One of the key changes we have made in response to what you told us is to remove
the option to impose financial sanctions associated with Never Events.We heard that
allowing commissioners to impose financial sanctions following Never Events rein-
forced the perception of a ‘blame culture’. Our removal of financial sanctions should
not be interpreted as a weakening of effort to prevent Never Events. It is about empha-
sising the importance of learning from their occurrence, not blaming.28

The NHS has had a Never Events policy since 2008, and there has been a creditable transpar-
ency by the NHS in relation to when these happen and what is being done to reduce their
incidence. It is doubtful, however, whether it is a realistic proposition to say that, in the future,
health systems can totally avoid Never Events occurring.Work can be done to minimise their
occurrence, but given that medical and nursing care is delivered by humans for humans, error
will always be possible; nobody is infallible.The best we can do is to try to minimise the occur-
rence of Never Events by effective risk management strategies. Given that we have had well over
a decade trying to deal with Never Events, it is worrying to hear from the CQC that they are
continuing to occur at a worryingly high level:

Despite this preventability, the number of Never Events has not fallen.About 500 times
each year we are not preventing the preventable.That means that around 500 patients
are suffering unnecessary harm.This failure to reduce the number of Never Events is
sending us an important message.29

Never Events are a rough barometer of the safety culture in an organisation as they can point to
serious defects in an organisation’s safety culture.These events should not be happening on the
scale that they are, particularly after over a decade of the NHS formulating policy and actions
over the Never Events problems.The fact that they are continuing to occur in a repeated fash-
ion, with the level not falling, is an acute problem for patients and NHS staff.The nature of the
Never Events works to sadly compound the nature of the patient safety cultural problem in the
NHS.

The NHS journey to develop an intrinsic patient safety culture

The experiences of the NHS with respect to Never Events constitutes an instructive global
lesson in the challenges and opportunities involved in developing an ingrained patient safety

28 NHS Improvement, Never Events Policy and Framework (n 25).

29 CQC, Opening the Door to Change (n 16). www.england.nhs.uk/wp-content/uploads/2021/01/Provisional-pu
blication-NE-1-April-30-November-2020.pdf Note that 226 Serious Incidents appeared to meet the defini-
tion of a Never Event in the Never Events list 2018 (published 31 January 2018) (see NHS Involvement,
Never Events List 2018 (NHS Involvement 2018) https://improvement.nhs.uk/documents/2266/Never_Events_
list_2018_FINAL_v5.pdf accessed 11 February 2021 and had an incident date between 1 April 2020 and 30
November 2020; this number is subject to change as local investigations are completed. See NHS England, NHS
Improvement, Provisional Publication of Never Events Reported as Occurring between 1 April and 30 November 2020 (14
January 2021) www.england.nhs.uk/wp-content/uploads/2021/01/Provisional-publication-NE-1-April-30-N
ovember-2020.pdf accessed 11 February 2021.

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 John Tingle

culture in a health system. There have been successes in the NHS patient safety journey and
there is an effective regulator of health and social care in the CQC.30 NHS Resolution can be
viewed as a success story in professionalising the NHS litigation environment.31 The National
Reporting and Learning System (NRLS), which is the central database of patient safety inci-
dent reports, can also be viewed as a success story in enabling the NHS to track and learn from
adverse health events.32
There are many other NHS patient safety successes but, sadly, there is also a litany of tragic
failures.The NHS has developed well-crafted patient safety policies and strategies since at least
the year 2000 with the publication of the seminal report An Organisation with a Memory.33 The
reports, policies, and initiatives are all too often eclipsed by crises, such as the Bristol Heart
Surgery crisis,34 the Mid Staffordshire crisis,35 the Morecambe Bay crisis,36 the Shrewsbury, the
Telford crisis,37 and the harrowing events chronicled in the very recent Cumberlege review.38
These events show that, regardless of well-crafted NHS patient safety policies and reports, there
remain endemic and seemingly insoluble safe care culture development problems in the NHS
which have survived years of attempts at resolution.
To begin the historical path analysis, it is worth reflecting on the words and sentiments
expressed in An Organisation with a Memory in 2000,39 and whether the same can be said today
over two decades later about NHS patient safety problems.This was a report of an expert group
on learning from adverse events in the NHS, chaired by the chief medical officer of the time,
Sir Liam Donaldson.The report set the scene for the development of patient safety policies and
procedures in the NHS and laid the foundation stones. It also identified chronic patient safety
issues and conceptualised them:

The time is right for a fundamental re-thinking of the way that the NHS approaches
the challenge of learning from adverse health care events.The NHS often fails to learn
the lessons when things go wrong and has an old fashioned approach in this area com-
pared to some other sectors.40

30 CQC, About Us:What We Do and How We Do It

www.cqc.org.uk/sites/default/files/20170504_CQC_About-us.pdf accessed 20 October 2020.
31 NHS Resolution,‘About NHS Resolution’ https://resolution.nhs.uk/about/ accessed 20 October 2020.
32 See NRLS, ‘Welcome to NRLS Reporting’ https://report.nrls.nhs.uk/nrlsreporting/ accessed 11 November
2020.
33 Department of Health, An Organisation with a Memory (n 9).
34 Ian Kennedy, The Report of the Public Inquiry into Children’s Heart Surgery at the Bristol Royal Infirmary 1984–1995:
Learning from Bristol https://webarchive.nationalarchives.gov.uk/20090811143822/http:/www.bristol-inquiry.
org.uk/final_report/the_report.pdf accessed 20 October 2020.
35 Robert Francis QC, The Mid Staffordshire NHS Foundation Trust Public Inquiry (TSO 2013) https://assets.publi
shing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/279124/0947.pdf accessed 20
October 2020.
36 Bill Kirkup, The Report of the Morecambe Bay Investigation (TSO 2015) https://assets.publishing.service.gov.uk/
government/uploads/system/uploads/attachment_data/file/408480/47487_MBI_Accessible_v0.1.pdf accessed
20 October 2020.
37 Jane Dalton,‘Shrewsbury Maternity Scandal: More than 900 Cases of Potential Poor Care Identified at Hospital’
The Independent (15 January 2020) www.independent.co.uk/news/health/shrewsbury-maternity-scandal/sh
rewbusy-maternity-scandal-nhs-hospital-babies-mother-a9285571.html accessed 20 October 2020.
38 Baroness Cumberlege, First Do No Harm:The Report of the Independent Medicines and Medical Devices Safety Review
(2020) www.immdsreview.org.uk/downloads/IMMDSReview_Web.pdf accessed 20 October 2020.
39 Department of Health, An Organisation with a Memory (n 9).
40 ibid xi.

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 An intrinsic patient safety culture

The report made ten recommendations, which included introducing a mandatory reporting
scheme for adverse health care events and specified near misses, encourage a reporting and ques-
tioning culture in the NHS, introduce a single overall system for analysing and disseminating
lessons from adverse health care events and near misses, and act to ensure that important lessons
are implemented quickly and consistently.41
An Organisation with a Memory42 was also published around the same time as the seminal US
patient safety publication To Err is Human, which set the patient safety agenda in the US.43
Both publications were influential change agents, creating an impetus and trajectory for
reform in the area of patient safety policy development in both countries.The publications can
be viewed as representing foundation stones of contemporary patient safety policy develop-
ment. Early NHS NRLS policy thinking can be seen in this report, but, unfortunately, lessons
remain to be learnt in relation to adverse patient safety incidents and implementing change.
Even though An Organisation with a Memory was published over two decades ago, it is as relevant
today as it was then in capturing current NHS patient safety problems that still require urgent
resolution.
Numerous well-reasoned and researched NHS patient safety reports have been regularly
published by the NHS organisations and other health quality and patient safety stakeholders.
Reports often contain the same themes, including trends of improving learning from adverse
events, developing a perspective that does not focus on individual fault, encouragement of
reporting, and advancing systems theory to the management of error. Systems theory, which is
described in An Organisation with a Memory , is, today, the most favoured directing patient safety
policy development and practice approach.According to the Department of Health:

Whilst those committed to the person approach tend to allocate the bulk of their
resources to trying to make individuals less fallible, the system approach aims for a
comprehensive programme directed simultaneously at people, teams, tasks, workplaces
and institutions. There is no single solution which can be applied in every circum-
stance. Since serious adverse events rarely have a single, isolated cause, attempts to
prevent or mitigate adverse events need to address not just single event chains, but
systems.44

NHS patient safety timeline

An Organisation with a Memory was followed by the report Building a Safer NHS for Patients,
Implementing an Organisation with a Memory in 2001.45 This report set out the government’s plans
for promoting patient safety. The report heralded the creation of the National Patient Safety
Agency (NPSA) which was, subsequently, abolished in 2012, with its functions transferring to
the now defunct NHS Commissioning Board.The NRLS was set up in 2003 and it still exists

41 ibid.
42 ibid.
43 Institute of Medicine, To Err Is Human: Building a Safer Health System (The National Academies Press 2000)
https://doi.org/10.17226/9728 accessed 14 October 2020.
44 Department of Health, An Organisation with a Memory (n 9).
45 Department of Health, Building a Safer NHS for Patients: Implementing an Organisation with a Memory, (Department
of Health 2002) https://webarchive.nationalarchives.gov.uk/20070403120932/http://www.dh.gov.uk/en/
Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/Browsable/DH_4097460 accessed 20
October 2020.

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 John Tingle

today in a more developed form. It was developed by the NPSA, along with several other patient
safety tools and publications. In 2006, the Department of Health published Safety First,46 which
found that progress was slow in implementing patient safety change. Managers, leaders, and oth-
ers were too focused on other matters.
In 2006, systemic failings were found in the NHS attitude to developing an ingrained patient
safety culture. A seminal focus of key leaders and managers was financial. Staff were making
insufficient use of patient safety data and effecting change. There was no cultural change. The
criticisms made in 2006 can be said largely still to apply today. Some progress has been made,
but it cannot be regarded as seismic progress by any account. Incremental progress has been
made and many of the problems identified in 2000 and 2006 persist today. In terms of the NHS
patient safety environment, over time, this became over-engineered and too complex. Today,
patient safety falls within, arguably, a confusing array of different NHS organisations, which
include NHS England, NHS Improvement NHS Resolution, the CQC, and the Healthcare
Safety Investigation Branch (HSIB). The fact that so many interconnected organisations exist
and function in parallel can create the risk of contradictory messages being given or gaps begin-
ning to emerge.

A confusing NHS patient safety landscape

Since the publication of An Organisation with a Memory,47 NHS health quality, patient safety, and
regulatory organisations have changed regularly. The landscape has been in a constant state of
flux with many organisations having competitions? Competing is a better word and changing
remits and agendas.This has led to healthcare staff confusion over patient safety organisational
remits, a point forcibly made by the CQC:

Arm’s-length bodies, including CQC, royal colleges and professional regulators, have
a substantial role to play within patient safety, but the current system is confused and
complex, with no clear understanding of how it is organised and who is responsible for
what.This makes it difficult for trusts to prioritise what needs to be done and when.48

Today, patient safety is a big global service industry, with lots of competing stakeholders and
organisations, nationally and globally.This has led to a current flood of research and publications
on patient safety, which has led some NHS staff to complain about managing all this and work-
ing out which information is a priority to action.The CQC found:

Trusts receive too many safety-related messages from too many different sources.The
trusts we spoke to said there needed to be better communication and coordination
between national bodies, and greater clarity around the roles of the various organisa-
tions that send these messages.49

46 Department of Health, Safety First:A Report for Patients, Clinicians and Healthcare Managers (Department of Health
2006) https://webarchive.nationalarchives.gov.uk/20130105032616/http://www.dh.gov.uk/prod_consum_dh/
groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_064159.pdf accessed 20 October 2020.
47 Department of Health, An Organisation with a Memory (n 9).
48 CQC, Opening the Door to Change (n16) 6.
49 ibid 6.

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 An intrinsic patient safety culture

The NHS running to stand still on patient safety

As indicated, there has been a multitude of papers dealing with NHS patient safety and health
quality regulatory reports saying largely the same thing and pointing out largely the same prob-
lems. In many ways, the NHS can, over the last decade, be seen to have been running to stand
still.The publications that have been discussed so far have all been well written and researched,
and the same can be said of more contemporary reports, such as Opening the Door to Change by
the CQC.50 The messages in all of them remain constant: change is not happening fast enough,
there are still inexcusable errors, and channels of communication need to be improved.There is
a need to take patient safety more seriously and to improve lesson-learning skills.We must put
the patient at the centre of care and be less defensive when complaints are made. The recent
Cumberlege review sends very strong signals here about the need for all this to happen to
improve patient safety in the NHS.51
The patient safety reports that have been published regularly and continue to be published
must also be seen within the context of major NHS patient safety crises, which have happened
all too regularly. The events call into question whether NHS staff have learnt from the sea of
reports published over the last 20 years or so, and whether the NHS will ever be able to develop
an ingrained patient safety culture.Three patient safety crises will be discussed, and conclusions
will be drawn on the most recent government efforts to develop a safe NHS patient safety
culture.

The NHS’s darkest hour: The Mid Staffordshire crisis

The terrible patient safety and care failings that took place in Mid Staffordshire have left an
indelible mark on the NHS and how it cares for patients.A significant number of patient deaths
occurred in the words of the inquiry chairman, Sir Robert Francis QC,52 ‘[b]etween 2005 and
2008 conditions of appalling care were able to flourish in the main hospital serving the people
of Stafford and its surrounding area.’53 The lapses in care revealed by the report shook the nation
and the NHS:

The first inquiry heard harrowing personal stories from patients and patients’ fami-
lies about the appalling care received at the Trust. On many occasions, the accounts
received related to basic elements of care and the quality of the patient experience.
These included cases where: Patients were left in excrement in soiled bed clothes for
lengthy periods; Assistance was not provided with feeding for patients who could not
eat without help; Water was left out of reach; In spite of persistent requests for help,
patients were not assisted in their toileting; Wards and toilet facilities were left in a
filthy condition; Privacy and dignity, even in death, were denied; Triage in A&E was
undertaken by untrained staff; Staff treated patients and those close to them with what
appeared to be callous indifference.54

50 ibid.
51 Cumberlege (n 38).
52 Francis (n 35).
53 ibid 7.
54 ibid 13.

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 John Tingle

The Francis Report55 was published in 2013, and several other reports followed it. The
Morecambe Bay scandal56 was another terrible and shocking patient safety crisis which again
rocked the NHS.This inquiry report57 was published in 2015 with Dr Bill Kirkup as the inquiry
chair. Shocking patient safety failings in maternity care were revealed. In the words of Dr Kirkup:

This Report details a distressing chain of events that began with serious failures of
clinical care in the maternity unit at Furness General Hospital, part of what became
the University Hospitals of Morecambe Bay NHS Foundation Trust. The result was
avoidable harm to mothers and babies, including tragic and unnecessary deaths.58

The report chronicles the nature and severity of the patient safety and governance failures that
occurred.Worrying findings included the poor working relationship that existed between some
staff, the dysfunctional nature of the maternity unit, poor adverse incident investigation pro-
cesses, and poor clinical governance systems. Problems of poor clinical competence, insufficient
recognition of risk, inappropriate pursuit of normal childbirth and failures of team-working
were also identified:

Many of the reactions of maternity unit staff at this stage were shaped by denial that
there was a problem, their rejection of criticism of them that they felt was unjustified
(and which, on occasion, turned to hostility) and a strong group mentality amongst
midwives characterised as ‘the musketeers’. We found clear evidence of distortion of
the truth in responses to investigation, including particularly the supposed universal
lack of knowledge of the significance of hypothermia in a newborn baby, and in this
context events such as the disappearance of records, although capable of innocent
explanation, concerned us.59

Patient safety scandals at Shrewsbury and Telford

In 2020, the NHS is again facing high-profile maternity care patient safety crises which echo
the failings in the Morecambe Bay crisis.This is all post Mid Staffordshire and Morecambe Bay,
raising the point that the NHS does have manifest problems in learning the lessons from past
NHS patient safety crises.These crises also compound the fact that there are systemic problems
in the NHS, which are making it difficult to effect a positive patient safety culture change which
puts the patient first. An internal report leaked to The Independent last year shows repeated care
failings and clinical malpractice going unchecked since the 1970s.60 The investigation is continu-
ing and at the time of writing, Matthew Weaver of The Guardian reported that the police are
now investigating maternity care at the Shrewsbury and Telford NHS Hospital Trust.61

55 ibid.
56 Kirkup (n 36).
57 ibid.
58 ibid 5.
59 ibid 8.
60 Dalton, (n 37). According to Dalton,‘[d]ozens of babies and three mothers died, and more than 50 children also
suffered permanent brain damage after being deprived of oxygen during birth, the investigation discovered.’
61 Matthew Weaver,‘Police Investigate Maternity Care at Shropshire NHS Trust’ The Guardian (30 June 2020) www
.theguardian.com/society/2020/jun/30/police-investigate-maternity-care-at-shrewsbury-and-telford-nhs-trust
accessed 20 October 2020. According to Weaver, ‘[a]n initial inquiry into about 250 cases found that at least

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 An intrinsic patient safety culture

The CQC Opening the Door to Change report

The best modern-day statements of where the NHS is currently at with patient safety is the
Opening the Door to Change,62 which looked at NHS safety culture, how matters can be improved,
and the need for a culture transformation.63 Problems, challenges, and opportunities were
explored, and several recommendations were given. The report’s focus was on Never Events,
which are stubbornly persistent in the NHS.The report paints a realistic picture of what needs
to happen in order to develop a patient safety culture in the NHS and to reduce the incidence
of Never Events.64 Issues discussed in the report include the ability of NHS trusts to learn from
incidents locally and at a wider level. This is hampered, according to the report, by slow and
unresponsive reporting processes that can discourage staff from reporting incidents:

Trusts cultures can also create barriers to sharing information. With no national sys-
tems in place to support this, trusts are not incentivised to collaborate with each other
and act together to learn from incidents that have happened.65

In terms of patient safety, education, and training, this is a confusing and complex area with
many different stakeholders and agendas.
In the foreword to the Opening the Door to Change report, Professor Ted Baker, Chief Inspector
of Hospitals at the CQC, drew attention to what can be regarded as an underlying weakness in
the safety culture of the NHS which urgently requires fixing. There is an apparent mismatch
between or contradiction between NHS cultural perceptions of patient safety and risk and those
of individual staff members:

There is a contradiction between how health care culturally thinks about patient safety
and the experience of individual members of staff. Staff know that what they do carries
risk, but the culture in which they work is one that considers itself as essentially safe.
We have repeatedly highlighted in our inspection reports that staff are often unwilling
or unable to raise safety concerns. Raising concerns challenges the cultural norms of
the workplace and the dichotomy between the safety reality and the safety culture may
be the reason why this has proved such an intractable problem.’66

A deep dive into NHS patient safety

The recent Cumberlege review, which looked into issues such as informed consent, patient
rights, the relationship between health carers and patients, and health carers and system defen-
siveness along with other matters, is a deep dive into NHS patient safety, the health system, and
the context of healthcare delivery. It does not make for easy reading and discusses some sad and
harrowing patient stories and does, to some extent, dent the reader’s confidence and trust in the

42 babies and three mothers may have died unnecessarily and more than 50 newborns suffered avoidable brain
damage at the trust. Since then hundreds more cases have emerged.The details of some of these cases, involving
deaths of babies and some mothers, will now be passed to the police.’
62 CQC, Opening the Door to Change (n 16).
63 ibid.
64 CQC, Opening the Door to Change (n 16).
65 ibid 32.
66 ibid 4.

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 John Tingle

NHS patient safety system: ‘[w]hat follows will not make comfortable reading for many who
have dedicated their lives with the best of intentions to delivering high-quality and compassion-
ate treatment and care.’67
It is a seminal and salutary contemporary report on NHS patient safety and should be read
by everyone concerned with the issues. In her review publication introductory letter to the
Secretary of State for Health and Social Care, Baroness Cumberlege articulates what has been
the central theme of this chapter:

We have found that the healthcare system – in which I include the NHS, private
providers, the regulators and professional bodies, pharmaceutical and device manufac-
turers, and policymakers – is disjointed, siloed, unresponsive and defensive. It does not
adequately recognise that patients are its raison d’etre. It has failed to listen to their
concerns and when, belatedly, it has decided to act it has too often moved glacially.
Indeed, over these two years we have found ourselves in the position of recommend-
ing, encouraging and urging the system to take action that should have been taken
long ago.The system is not good enough at spotting trends in practice and outcomes
that give rise to safety concerns.68

The review covered and reported on several overarching themes which included informed
consent, redress, complaints, and duty of candour.

The new NHS Patient Safety Strategy

The new NHS Patient Safety Strategy was published on 2 July 2019, and it maintains an excellent
potential to further the development of an ingrained patient safety culture into the NHS.69 The
proposals in the report will help address many of the systemic NHS patient safety problems dis-
cussed in this chapter. However, it is fair to say that cultures don’t change overnight as the report
recognises, and much will depend on how many resources are given to implement the proposals
in the NHS strategy and how seriously this strategy is taken by the NHS. As previously stated,
history has not served the NHS well when it has come to NHS patient safety policies driving
sustainable changes in NHS attitudes and practices.

Conclusion
The NHS is on a long journey to developing an ingrained patient safety culture, and it has made
excellent efforts in producing policies and reports.There must, in general, be more recognition
by NHS staff and those that manage them that the patient is always going to be the weaker
party in the care equation. Close application of the relatively new duty of candour is a neces-
sary ingredient in advancing the quality of the dialogue between the patient and the healthcare
professional/provider.The NHS has had, since at least the year 2000, a long and bumpy journey
on the road to developing an ingrained patient safety culture, and it is still trying hard. There
are systemic problems that need to be solved and patient safety crises still seem to regularly rock
the NHS. The words of the Cumberlege review sum up well the patient safety situation with

67 Cumberlele (n 38).
68 ibid i–ii.
69 NHS England, NHS Improvement, The NHS Patient Safety Strategy (n 18).

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 An intrinsic patient safety culture

the NHS and the challenges to be met. It is also worth reflecting whether the patients in the
Cumberlege review had effective and recognised rights to health. If they did, their rights were
seriously compromised.

We heard about a system that does not work in a joined-up fashion, and that lacks
the leadership to deliver coherent and fully integrated patient safety policy directives
and standards. Mistakes are perpetuated through a culture of denial, a resistance to no-
blame learning, and an absence of overall effective accountability. This culture has to
change, starting at ground level while being encouraged and supported from the top.70

Research is critical in designing sustainable patient safety and health quality systems. More
research is needed into issues such as how to respond to patients’ complaints in a way that avoids
litigation. The development of effective patient safety tools is also an important research need
and there are many others.
The NHS patient safety strategy holds out a lot of promise to greatly improve the NHS in
England. A failure to keep patient safety at the cornerstone of practice, of innovation, and of
review means that the right of the patient to healthcare that meets individual needs is com-
promised. At a global level, much can be done to ensure that, when patients enter the portals
of a hospital, all is done to ensure that, at the very least, their safety is not compromised but
is prioritised. If this is done, then one small but important step in the realisation of a right to
health is taken.
Patient safety is today a global priority for all countries. A right to health brings with it an
implied right to safe and secure healthcare treatment.The fact that the NHS and its healthcare
systems have, in many instances, failed to deliver on patient safety means that, ultimately, they
have failed to ensure that the right to health is applied and protected. Only one context has been
outlined here, but the same concern applies globally. If we wish to ensure that a right to health is
acted upon and applied in practice, then healthcare providers and the governmental systems that
underpin this provision need to ensure that the healthcare that is delivered meets appropriate
safety and quality standards.There is evidence that aspects of patient safety are being improved,
but, equally, there is also evidence that much more needs to be done. A right to health is one
that we cherish and wish to see in operation. But it can only exist when appropriate candour,
adverse-incidents reporting, and effective overarching governance are evident alongside.

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70 Cumberlege (n 38) 7.

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2020.
Tingle, John, Ó Néill, Clayton, and Shimwell, Morgan, Global Patient Safety: Law, Policy and Practice
(Routledge 2018).
Weaver, Matthew, ‘Police Investigate Maternity Care at Shropshire NHS Trust’ Guardian (30 June 2020)
www.theguardian.com/society/2020/jun/30/police-investigate-maternity-care-at-shrewsbury-and
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9789241598590_eng_Checklist.pdf?sequence=2 accessed 20 October 2020.

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WHO, Patient Safety Curriculum Guide Multi-Professional Edition (WHO 2011) www.who.int/patientsafety
/education/mp_curriculum_guide/en/ accessed 20 October 2020.
WHO, Human Rights and Health (WHO 29 December 2017) www.who.int/news-room/fact-sheets/detail
/human-rights-and-health accessed 14 October 2020.
WHO, OECD and International Bank for Reconstruction and Development/The World Bank, Delivering
Quality Health Services:A Global Imperative for Universal Health Coverage (2018) https://apps.who.int/iris
/bitstream/handle/10665/272465/9789241513906-eng.pdf?ua=1 accessed 20 October 2020.
WHO, World Patient Safety Day (WHO 2020) https://www.who.int/patientsafety/world-patient-safety-da
y/en/accessed 11 February 2021.
WHO, Before Birth: WHO Safe Childbirth Checklist https://apps.who.int/iris/bitstream/handle/10665/1
99179/WHO_HIS_SDS_2015.26_eng.pdf; jsessionid=9BE29599068A424F744EFCBC643DFFA8?s
equence=1 (WHO 2015) accessed 20 October 2020.
WHO, Patient Safety Fact File, Patient Safety and Risk Management Service Delivery and Safety (WHO 2019)
www.who.int/features/factfiles/patient_safety/patient-safety-fact-file.pdf?ua=1 accessed 20 October
2020.
WHO,‘Patient Safety:About Us’ www.who.int/patientsafety/about/en/ accessed 14 October 2020.

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 14
CLINICAL NEGLIGENCE
LITIGATION PROCEDURE,
POLICY, AND PRACTICE
IN ENGLAND
The product of a legal cycle rather than
an application of a right to health?

Stephen King

Introduction
This chapter has two functions: (1) it offers another perspective on patient safety and rights to
healthcare in England that complements and develops the arguments of John Tingle (Chapter
13) and Helen Hughes (Chapter 15); and (2) it differs from many other chapters, being practice-
focused and derived from my experience as a solicitor dealing with medical negligence for over
30 years. The perspective offered is one of practice in England, but my caution and proposed
solutions might be applied within a global context as the issue of patient safety is one that exists
in all geographical contexts. Equally, the chapter does not address in detail the issue of a right to
health, but asserts that much of the legal work that centres on negligence claims does not evolve
from consideration of human rights but rather from a tortuous legal cycle that often, unfortu-
nately, is of little benefit to either claimant or system.The lack of consideration of human rights
in the litigious process is, perhaps, a salient gap.
Patient safety and patient outcomes are at the heart of healthcare provision.They are exten-
sively monitored and measured, and those details published. This allows healthcare providers
to be audited; compared; occasionally censured or penalised, or put into ‘special measures’;
challenged; and possibly improved. A lot of work has gone into improving patient outcomes.
The analysis of statistical norms and ‘outliers’ reveals much about the effectiveness of medical
practice.These statistics have proved useful in managing change in how healthcare is delivered.
For example, the ‘Getting It Right First Time’ (GIRFT) project, is an example where it has been
demonstrated that identifying outliers and requiring the concentration of particular healthcare
resources nurtures best practice and improves patient outcomes.1

1 GIRFT www.gettingitrightfirsttime.co.uk accessed 9 November 2020.

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 Clinical negligence litigation procedure

Improving outcomes is essentially about cost control. Not so much cost control of the here
and now and the treatment being offered today, but future treatment and costs. Better outcomes
equal fewer ongoing treatment episodes and ultimately less cost.2 Despite initiatives like GIRFT,
the annual cost of malpractice is growing, inexorably some suggest.
If the problem is the cost of malpractice, there are signs the United Kingdom (UK) govern-
ment is interested in fixing it. It has completed a consultation about managing escalating costs
by imposing costs caps.3 It has completed another consultation on whether discretionary, non-
contractual, unregulated, unenforceable indemnity arrangements (which historically have made
up the majority of indemnity arrangements for medical practitioners outside their National
Health Service [NHS] practice, and left some injured patients without redress) should change.
The outcomes of those consultations have yet to emerge.4
It is public knowledge that the cost of dealing with medical malpractice is ever increasing.
In his commentary in the most recent NHS Resolution (NHSR) annual report, the NHSR
Chairman reported that in relation to one of its schemes, the Clinical Negligence Scheme for
Trusts (CNST):

The cost of harm for CNST in 2019/20 is estimated to be £8.3 billion, which for the
first time is clearly shown in our accounts.This is slightly lower than the c£9 billion
we reported last year, again largely due to lower inflation expectations … The number
of new claims has risen this year by 6% in secondary care.5

The cost of poor patient outcomes is substantial, and not just in the NHS.

Who pays?
England has a public healthcare service called the NHS. Healthcare from the NHS is free – or
free at the point of delivery.The patient does not pay (save in some exceptional circumstances
such as prescription charges) for the care available. Although free to the patient, the healthcare
provided is not cheap.
This difficulty of resolving a seemingly impossible problem of increasing costs may be why
the citizen has no enforceable right to healthcare in the NHS. Public healthcare is organised by
laws and rules that require it to be in place to serve the population. Organisations such as the
National Institute for Health and Care Excellence (NICE), and local funding arrangements,
NHS contracting, and other contractual or non-contractual ‘pacts’ not generally visible within
the organisational structure of the NHS, ensure that decisions about the availability of healthcare
resources are removed from the people using them.

2 NHS England, NHS Five Year Forward View (2014) www.england.nhs.uk/wp-content/uploads/2014/10/5yfv

-web.pdf accessed 9 November 2020.
3 Paul Fenn, Fixed Costs for Clinical Negligence Claims: A Cost Analysis Approach (2018) https://assets.publishing.serv
ice.gov.uk/government/uploads/system/uploads/attachment_data/file/681388/Professor_Fenn_s_Report_in_
DH_Template.pdf accessed 9 November 2020.
4 Department of Health and Social Care, Appropriate Clinical Negligence Cover (Department of Health and Social Care
2019) www.gov.uk/government/consultations/appropriate-clinical-negligence-cover accessed 9 November 2020.
5 NHS Resolution, Annual Report and Accounts 2019/20 (NHS Resolution 2020) https://assets.publishing.service
.gov.uk/government/uploads/system/uploads/attachment_data/file/901086/nhs-resolution-2019-20-annual-re
port-and-accounts-print-version.pdf accessed 9 November 2020.

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 Stephen King

Of course, one sees challenges by way of judicial review to decisions about healthcare resource
provision. Usually they centre on a costly treatment regime – often medications – where NICE
have decided not to offer it, that ignites a challenge to that decision by the patient wanting it.
These are emotive, often political cases. Occasionally, the decisions are reversed or reconsidered,
and treatment is provided. Such cases could be perceived as demonstrating a right to treatment
that the patient has protected by their challenge. But that is not the case.All the patient has done
is challenge the rationale of the decision to withhold treatment.They may have gained access to
a treatment by their challenge, but they have not established a right to it.
Section 1 of the NHS Act 2006 requires that the Secretary of State for health must continue
the promotion in England of a comprehensive health service designed to secure improvement:

(a) in the physical and mental health of the people of England, and
(b) in the prevention, diagnosis and treatment of physical and mental illness.

(2) For that purpose, the Secretary of State must exercise the functions conferred by
this Act so as to secure that services are provided in accordance with this Act.
(3) The Secretary of State retains ministerial responsibility to Parliament for the pro-
vision of the health service in England.
(4) The services provided as part of the health service in England must be free of charge
except in so far as the making and recovery of charges is expressly provided for by
or under any enactment, whenever passed.6

This creates duties for the Secretary of State for Health. Decisions around the exercise of those
duties can be judicially reviewed. Such ‘rights’ as a citizen might have to challenge such decisions
are subject to the laws imposing the duties not being repealed. So, a right to healthcare is a flimsy
concept.That said, the Human Rights Act 1998 does oblige public bodies (including the NHS)
to comply with rights enshrined in the European Convention on Human Rights, which mostly
have an impact on the protection of vulnerable patients, and medical care in prisons/detention
facilities.7 Additionally,Article 35 of the Charter of Fundamental Rights of the European Union
(2000) specifically says:

Everyone has the right of access to preventive health care and the right to benefit from
medical treatment under the conditions established by national laws and practices. A
high level of human health protection shall be ensured in the definition and imple-
mentation of all Union policies and activities.8

This was implemented into European Union (EU) law when the Treaty of Lisbon came into
force in 2009 and is, therefore, directly applicable. However, whatever rights it provides will be
lost as a result of the UK leaving the EU. Richard Horton, the Editor in Chief of The Lancet,
wrote about how best to overcome this loss by the creation of a moral contract between the
medical professions and society in his article in March 2019.9

6 National Health Service Act 2006 (emphasis added).

7 Human Rights Act 1998.
8 Charter of Fundamental Rights of the European Union, 2012/C 326/02.
9 Richard Horton,‘Offline: UK Citizens Are Losing the Right to Health – Who Cares?’ (2019) 393 The Lancet 860.

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 Clinical negligence litigation procedure

A ‘right to health’ exists under in the Universal Declaration of Human Rights of 1948
(UDHR), which is a core United Nations (UN) document. It is a non-binding resolution, but
the foundation of customary international law.According to Article 25(1) UDHR:

(1) Everyone has the right to a standard of living adequate for the health and well-
being of himself and of his family, including food, clothing, housing and medical care
and necessary social services, and the right to security in the event of unemployment,
sickness, disability, widowhood, old age or other lack of livelihood in circumstances
beyond his control.

Finally, we have the right to health in the International Covenant on Economic, Social and
Cultural Rights of 1966 (ICESCR) (in force since 1976).This is a multilateral UN treaty ratified
by 171 parties, including the UK.Article 12 ICESCR states:

(a) The States Parties to the present Covenant recognize the right of everyone to the
enjoyment of the highest attainable standard of physical and mental health.
(b) The steps to be taken by the States Parties to the present Covenant to achieve the
full realization of this right shall include those necessary for:
(a) The provision for the reduction of the stillbirth-rate and of infant mortality
and for the healthy development of the child;
(b) The improvement of all aspects of environmental and industrial hygiene;
(c) The prevention, treatment and control of epidemic, endemic, occupational
and other diseases;
(d) The creation of conditions which would assure to all medical service and
medical attention in the event of sickness.

The ICESCR is monitored by the UN Committee on Economic, Social and Cultural Rights
(CESCR), which receives five-yearly reports by states. It operates on the principle of ‘progres-
sive realisation,’ i.e. what a state can do at that time with its available resources.There are very
few mechanisms for actual enforcement. There is an Optional Protocol giving CESCR more
enforcement tools, but the UK has not ratified it.The role of these for the CESCR as well as the
international treaties are discussed in more detail by Foster, Herring, and Ó Néill in Chapters 2,
3 and 4, respectively, of this book.

So where does this leave the UK?

The UK has a ‘dualist’ system with regard to international treaties. Treaties place legal obli-
gations on the government (which can then create implementing legislation, e.g. European
Communities Act 1972), but they are not legislation and cannot alter UK domestic law. They
do not create rights that individuals can enforce in UK courts.The NHS may be viewed as one
single entity, but the organisation of the NHS is complex. It can be confusing and seem incon-
sistent in its approach to resource management and the delivery of healthcare.
There are many different interests within the NHS, some more commercial than others.
These interests often work collaboratively, but are sometimes in competition, and can appear to
users as inconsistent. Healthcare on offer in one location may not be on offer or may be more
limited in another.There are more private than public markets that operate out of sight.There
are some shared resources and infrastructures and other scenarios where different healthcare
pathways operate to provide care without ‘speaking’ to each other and sharing information.

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 Stephen King

Providing a free service for 66 million people requires careful husbandry of resources. For
that reason, while the NHS exists to provide free care, neither I nor you has a right to it. My
access to NHS healthcare is limited by the resources that are available, by the population that
needs them, and our respective healthcare priorities. It may be partly because the NHS is not a
single organism that problems arise, errors are made, and people are injured (and die). It is why
costly claims arise that are becoming more unaffordable.
Alongside the NHS, which provides the majority of healthcare episodes in the UK, is an
active, commercially viable, and growing independent and charitable healthcare sector. More
and more people, even those without health insurance, elect to pay for what is often referred to
as private healthcare, as they perceive they have more choice about who they see and when they
see them. In a world where the culture of entitlement rings out loudly, going private and not
having to wait for the care the NHS can provide is seen as an acceptable choice for those who
can afford to make it.

Relationships?
A patient receiving treatment from the NHS has one relationship – with the NHS.All the peo-
ple the patient sees are employed by the NHS. If something goes wrong, in common with settled
law, the employer carries the liability for the errors and omissions of its staff.The employer is, as
we say, vicariously liable.The NHS may contract with external third-party providers to provide
part of the care package – diagnostic testing is a good example. But the patient injured will still
be able to seek redress against the NHS. If the NHS wants to recover its outlay from the third-
party provider and its insurer it can do so.
In the independent or private sector, relationships are more complex. In the majority of cases
where patients see doctors in the independent sector, the patient may not know exactly what
their relationship is with the doctor. Few patients ask about it, and most never need to as their
treatment episode is incident free. Doctors in the independent sector are typically not employed
by the organisation owning the bricks and mortar (i.e. the clinic or hospital) where the patient
is actually seen.The doctor will, typically, have a relationship with a private/independent hospi-
tal (referred to as practising privileges) and be able to see their private patients there alongside
NHS patients who use the ‘choose and book’ arrangements allowing private hospitals to carry
out treatments on NHS patients and be paid a fee for doing so.The private hospital takes a fee
for the provision of the buildings, the equipment used, and the consumables expended (band-
ages for example).The doctor takes a separate fee for their time and experience.The patient, the
health insurer, or the NHS might pay those fees for the private treatment provided on tariffs
that are agreed in advance.
When something goes wrong in the independent sector, the patient has to establish from
whom they are seeking redress and consider taking action against the doctor, the hospital or
clinic, or the nursing staff.This can lead to a culture of blame and cause delays until it has been
clarified who ought to respond to the claim.
Typically, a patient making a claim for redress against the NHS relies on the tort of negli-
gence. The patient of the private/independent provider relies on contract or tort, though the
law of contract adds nothing of substance to their claim in tort. Rarely will patients rely on
their human rights in seeking redress. In those relatively rare cases where human rights might
be invoked, in my experience, the patient has usually died, often at their own hand, and the
grieving family are looking for more than money.They are seeking recognition that something
went tragically wrong and want it declared that the patient or deceased was let down.The issue

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pertaining to declaring fault is interesting as many patients who have suffered injury report
that their main objective in raising a complaint or claim is not to seek monetary compensa-
tion (which is all a court can offer), but to draw attention to failings and ensure that learning
emerges from the episode such that future events of a similar nature are avoided or the risk of
them occurring is mitigated.10

Indemnity issues
Establishing who the right target (or defendant) should be is important for an injured patient.
The patient needs to be able to identify the culpable or liable person or entity. More impor-
tantly, the defendant named needs to be able to cover the award made against them. Personal
wealth rarely features in such investigations as usually the individual or entity named as
defendant is indemnified or insured. The General Medical Council (GMC) and the NHS
require that providers of healthcare should have adequate and appropriate indemnity in place
– to provide patients who are injured with an effective means of redress.11 If the healthcare
was provided by the NHS, selecting the right defendant is usually straightforward. In the inde-
pendent sector it can be more complicated and made even more complicated by unforeseen
developments.
Take the case of Ian Paterson, the disgraced and imprisoned surgeon who injured many of
his patients. Some of his patients were injured while being treated by him on the NHS. In those
cases, the NHS carried the liability for his errors and omissions.The argument against the NHS
was that it was either directly culpable for allowing Paterson to continue to do what he did, or
it was vicariously liable for his actions while he was employed by the NHS.12
NHS organisations typically pay a membership fee or contribution to an indemnity scheme
managed by a special health authority created by statute. That organisation, initially known as
the NHS Litigation Authority is now called NHS Resolution (NHSR). In return for its mem-
bership contribution, NHSR takes on the responsibility for managing claims made against the
NHS in all its forms – more or less.The NHS organisation indemnified under the rules of the
scheme it belongs to has no legal right to an indemnity, as the schemes are discretionary.That
is to say that as long as the NHSR exercises its discretion to offer an indemnity, it will be pro-
vided.The schemes seem to work well enough, there being a firm expectation that redress will
be provided in the NHS, which it generally is, once the claim is established. Again, the injured
patient has no right to demand redress against the NHS. Rather, the NHS is required to ensure
redress is available.
In some ways, this discretionary scheme arrangement is not ideal. One might detect an
abdication of responsibility by the NHS Trusts and Foundation Trusts that are members of these
discretionary indemnity schemes.An NHS Trust might be the correct legal defendant to a claim
made against it by an injured patient, but the NHS Trust will have paid NHSR its annual contri-
bution and expects the NHSR to take over and manage, and hopefully resolve, the claims against

10 Action against Medical Accidents, The Draft Health Service Safety Investigations Bill and “Safe Space” (Action against
Medical Accidents 2017) www.avma.org.uk/?download_protected_attachment=HSSIB-briefing-19.10.17.pdf
accessed 9 November 2020.
11 ‘Insurance indemnity and medico-legal support’ General Medical Council gmc-uk.org.
12 The Right Reverend Graham James, Report of the Independent Inquiry into the Issues Raised by Paterson (2020) https
://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/863211/issues-
raised-by-paterson-independent-inquiry-report-web-accessible.pdf accessed 9 November 2020.

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it.What does the NHS Trust care about how NHSR do that or what outcome is achieved? If
the NHS Trust leaves the management of the claims for redress against it to a third party, what
has it invested in risk management, or better patient outcomes, to ensure the same injury is not
caused to another patient?
To return to the example of Paterson, he also injured many of his private patients.The claims
of those private patients were initially made against him and passed by him to his private practice
indemnity provider, the Medical Defence Union (MDU). It also managed a discretionary indem-
nity scheme and exercised its discretion to decline to offer Paterson an indemnity, as it was entitled
to.That decision, which left Paterson without indemnity, left a group of injured patients without
effective redress. So, they looked to the independent hospitals where Paterson had operated, seeing
them and potentially their respective insurers as a deep pocket able to provide redress.
Those hospitals would traditionally not have employed Paterson but have allowed him
practising privileges, requiring him to carry appropriate and adequate indemnity against
such claims. Accordingly, the independent hospitals would have felt protected from such
lawsuits as might emerge from the antics of a ‘rogue’ practitioner. However, when the
indemnity provider of Paterson declined cover, the independent providers faced potential
claims that they either allowed an incompetent person to operate on their premises in a
way that injured his patients and were directly liable for that, or that they were vicariously
liable for his actions.

Pricing and contracting

That model of expecting the doctor in private healthcare practice to carry the risk of malprac-
tice is a reason why some providers of healthcare may not have effectively indemnified them-
selves to cover the malpractice of the doctors (or other self-employed clinical staff) who practise
at their hospitals and clinics.As far as they are concerned, they could divert any claims for redress
to the doctor and his indemnity scheme or insurer.
Of course, what has happened with Paterson and other situations where, for one reason or
another, the doctor has found indemnity declined, is that the courts have been asked to look
at the gap in the availability of redress, at least in the independent sector.The courts have been
quick to clarify and develop the law around both vicarious liability and a non-delegable duty of care,
which may fix a clinic or health provider with liability for the negligence of the surgeon, even
if they are described by and contracted to the clinic or provider as ‘self-employed.’ But the law
on this issue is not entirely clear and, even now, there are instances where healthcare providers
are facing claims which they never imagined they would be held responsible for and where
they did not carry insurance or indemnity for the claim they are facing. In an extreme case, if
liability is established, the provider may become insolvent and the claimant left with only partial
or possibly no effective redress.
For this reason, the government consulted on changing the indemnity arrangements in
the UK to scrap discretionary schemes and bring in a regulated and contractually enforceable
arrangement akin to commercial insurance.Yet, even with insurance, there can be circumstances
where, if the insured doctor or hospital has failed to comply with the conditions of their insur-
ance, which is a contract after all, the insurer may decline cover and again leave the injured
patient without effective redress.
There is no legal right to redress. Contracts may be written to provide for it. Regulators may
insist healthcare providers arrange to respond to demands for redress, but in the end, redress may
be illusory – depending on the exercise of discretion or the failure of the provider to comply
with the terms of their indemnity agreement.

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The process of seeking redress

Having tried to briefly expose the organisational aspects of healthcare provision and indemnity
that will provide for redress when things go wrong, I want to turn to the process of redress. In
this jurisdiction, we use the tort of negligence. Someone who owes the patient a duty of care
has done something or omitted something that means the standard of healthcare was below that
reasonably expected. Someone has been injured as a consequence of that lapse, and can prove a
causal connection between their injury (and other losses) and the negligence about which they
complain.There are two important points to bear in mind here.The first is the duty of candour
and the second is the role of a complaints process.
The duty of candour, which emerged from a public inquiry into the events at Mid
Staffordshire Hospitals, and the recommendations of Robert Francis QC who chaired that
inquiry, is now embodied both in law and professional practice.13 The duty requires that when
something has gone wrong and someone is injured as a consequence, the healthcare provider
must both explain to the patient what happened and why and apologise for the injury they have
suffered.The ethos is not about giving the patient rights to insist on candour or take action if
candour is lacking, but about healthcare providers being transparent and owning up to mistakes.
If they do not, a patient might not know that candour has been denied them.
Healthcare providers generally identify when things go wrong. They log it on their risk
management system and undertake a serious untoward incident report or root cause analysis,
which in many cases they will share with the patient or their family.Those investigations often
(but not always) uncover the reasons or series of reasons, why something went wrong, and can
be used to ensure lessons are learned and healthcare improved in the future.All that information
is disclosable and can form the body of evidence to support a claim for redress.
Even if the incident or injuries were not sufficiently serious to invoke the duty of candour,
a healthcare provider will have a formal complaints process that can be used to uncover facts
and establish an explanation for care that has been sufficiently lacking (in the experience of the
patient). Again, this process will allow for a period of reflection and may produce information
that establishes someone is at fault. It may also settle in the patient’s mind what actually hap-
pened until a potential claim loses momentum.
It surprises me how often the first time a healthcare provider gets to know about a legal
claim is when they receive a formal letter of claim (which will be discussed later). Even where
the healthcare provider knows something has gone wrong and has written up their risk man-
agement and serious incident reports, they may just file them. If they do, they will miss the
opportunity to approach the patient and try to resolve a simmering problem before it escalates.
Equally, the patient often never returns to the provider to raise their concern. Instead, they
respond to the wealth of media advertising to make a claim.They can become a bystander in a
claim brought in their name but which in many cases looks more like a claim the purpose of
which is the pursuit of legal fees.

Pre-action protocol
An injured patient does not have to wait for the apology and explanation the duty of candour or
complaints process requires. If an injured patient wants to bring a legal claim for compensation
against the healthcare provider – and compensation is all they can get from a legal claim as a

13 Health and Social Care Act 2008 (Regulated Activities) Regulations 2014: Regulation 20

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patient cannot invoke a right to, and a court cannot order, apologies or explanations – then they
must comply with the pre-action protocol for the resolution of clinical disputes, which is now
part of the Civil Procedure Rules.These are the court rules that set out how to make a claim.14
The protocol is a process that requires the claimant to set out in detail why they think they have
a claim.Who do they hold liable, and why?
To be able to produce a protocol compliant letter of claim, the patient/claimant will usually
need a lawyer equipped to collect their various healthcare records and instruct an appropriate
independent expert able to offer a view on whether the care the patient received fell below the
standard to be expected.Very importantly, the claimant has to find a lawyer who will fund the
case (to be discussed).
The claimant will have to demonstrate a causal link between their injury and the negligent
error of the healthcare provider. It seems obvious to say this, but patients are usually seeing doc-
tors because there is something wrong with them. Not always of course, if one considers the
very many people who elect to have plastic surgery for cosmetic reasons. But generally, most
patients have a pre-existing problem which has led them to seek healthcare. Some have very
many overlapping and complex pre-existing problems.The question therefore is, Has the error
or omission of the doctor which the patient can prove made things worse? Or is the original
problem that caused the patient to see the doctor in the first place the reason for the outcome
and injury.This need to prove a causal link is often the reason why such claims fail.
Often the letter of claim is insufficiently detailed to comply with the protocol. That defi-
ciency can sometimes be the inexperience of the claimant lawyer, but not always. If the letter of
claim is complete, the recipient healthcare provider will know the claim they have to respond to
and will also know, in general terms, that the allegations and arguments set out in the letter of
claim are supported by an independent opinion from a doctor practising in the same specialty as
the one accused of negligence.What I mean is that by the time the letter of claim lands on the
mat of the healthcare provider, a lot of effort (and expense) has been invested in demonstrating
there is a claim to answer. On receipt of a letter of claim, the healthcare provider has four months
from the date they receive it to respond to it with their letter of response.
Again, it is surprising how often the protocol letter of claim comes out of the blue. It is particu-
larly surprising if the incident about which the complaint is being made was particularly serious.
Was it investigated earlier and, if so, what was the outcome? Was the duty of candour applied?
Even if an opportunity to investigate the matter earlier has been lost, four months is usually a
reasonable time to investigate and decide on a response.After such an investigation, the outcome
may be that the claim is valid, admissions are made, and efforts are directed to resolution and
redress. In other cases, the claim is not sustainable, at least not on the opinions of the experts
who were asked to offer a view by the healthcare provider. In those cases, the provider will have
to deliver a formal response to the letter of claim.That might be part admission and an accept-
ance of some of the consequences alleged to have arisen from the breach of duty. It might be an
admission of breach of duty but a rejection of the causation case. If the letter of claim set out the
losses suffered, those losses might be accepted or accepted in part, or rejected.
The purpose behind the introduction of the pre-action protocol was to bring the parties to
the table, let the claimant reveal their case, and allow the defendant to challenge it.The purpose
was to make litigation the last resort. Importantly, a purpose of the protocol was to reduce the
cost of such claims. Sadly, it has not achieved that aim.

14 Pre-Action Protocol for the Resolution of Clinical Disputes www.justice.gov.uk/courts/procedure-rules/civil/

protocol/prot_rcd accessed 9 November 2020.

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Once the letter of response has been served, the claimant can decide whether to negotiate,
back off, or litigate. The protocol exchange might identify scope for a compromise that stops
short of court action. If not, the claimant can issue legal proceedings.Were the claimant to issue
proceedings before invoking the protocol, or if they pay lip service only to the protocol, they
might well be penalised by the court even if successful in their claim.Typically, in my experience,
a claimant does not make an offer of settlement when they send their letter of claim. Quite often
the letter of claim is silent as to aspects of the claim that are supposed to be included in the letter
of claim such as the value of the claim or the damages sought.
If the protocol were actually used to try to resolve claims, rather than allow a box to be ticked
before legal costs (already high at that stage) start building exponentially, it just might be that claims
would be resolved more quickly. One wonders whether the process is an exercise in obtaining
redress or maximising legal fees. I said earlier that I did not consider the pre-action protocol had
made litigation a last resort.The effort behind doing that was to simplify the process for obtaining
redress and reduce the cost of malpractice claims. Instead what has happened is that the claimant
is now encouraged to investigate and launch their claim, often where the defendant is ignorant of
the developing claim. By the time they get to know about it, the defendant may well find the costs
have eclipsed many times the actual and proportionate value of the claim.
As Adrian Zuckerman put it, the excessive cost of malpractice claims lies not in the complex-
ity of the procedure, the pre-action protocol, and the introduction of the Civil Procedure Rules
(which were meant to allow the courts to manage litigation), but in the incentives that lawyers
have to complicate litigation. Lawyers are typically paid by the hour and have no direct incentive
to economise in the provision of services. So, one finds that a natural desire to maximise reward
leads to forensic practices designed to increase profits rather than secure effective redress.15

Litigation and mediation – offers

Once the protocol process is complete, the parties will know if they can resolve matters. If they
cannot legal proceedings start and at this point the court takes over the management of the
timetable towards resolution. The parties exchange pleaded cases (though these are usually a
more formal recasting of the pre-action protocol correspondence, supported by the opinions of
the independent experts the respective parties to the claim have engaged) and ask the court to
fix directions for the phased development and eventual resolution of the claim.
Along the way, there will be disclosure, where the parties share evidence about their case,
though often this has mostly been done in the pre-action protocol phase save for the evidence
supporting the losses that might not have been available at that time. Statements of witnesses
will be prepared and exchanged. Expert reports, so secretively withheld pre-action, will now
be flourished and the authors of those reports will be asked to meet or discuss their opinions
following an agenda that is meant to be agreed (but often is not) by the parties.That this might
have happened much earlier remains a glaring gap in the effectiveness of the pre-action protocol.
In some cases, the breach of duty is easy to identify and can be admitted or partially admit-
ted.That allows the parties to focus on causation and loss. Some cases that proceed to trial only
deal with causation and loss, or possibly only with causation as it may have been possible for
the parties to agree the value of the claim depending on what points are proven to the judge.

15 Adrian Zuckerman, ‘Lord Woolf ’s Access to Justice: Plus ça Change…’ (1996) 59(6) The Modern Law Review
773–96.

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At times, the breach of duty will be worth sorting out early on and so an interim hear-
ing might take place on the preliminary issue of breach of duty or limitation. Limitation can
be tricky in malpractice cases, as problems caused by malpractice may lie dormant for some
time. By the time a claimant realises they have a claim, the primary limitation period may have
expired. Even so, that period may be extended by a later date of knowledge which delays the
start of the limitation clock or the court may exercise its discretion to disapply the limitation
period and allow the claim to proceed if the claim looks to have merits, if the delay can be
explained, and if a fair trial can still be held.
Legal aid is only available in relatively few cases involving vulnerable claimants, such as
minors. The court is expected to manage the costs expenditure so costs budgets will be pre-
pared, revealing the eye-watering sums the lawyers have already spent and expect to spend on
the claim. Eventually the claim will either resolve because the parties reach common cause, or
there is a mediation which allows a compromise to be worked out. In the relatively very few
cases that are fought, a judge will decide who wins and who loses. If a case gets to court, no one
really wins.There are a number of devices that parties can engage to try to resolve the claim or
to test the resolve of the opponent.
Within the Civil Procedure Rules, Part 36 allows a party to make an offer which is kept from
the court until it needs to be revealed.The purpose of making a Part 36 offer is to put on the
table an offer to pay or a willingness to accept a sum of compensation. If the party to whom the
offer is made decides to reject the offer and ultimately recovers less than the sum offered, they
will typically suffer a penalty. So, the incentive is to pitch an offer that is likely to be accepted,
but in the knowledge that if it is not, the party rejecting it is at risk.
Mediation is another device or process that is commonly used to resolve malpractice claims.
Whilst it is often the case that parties can negotiate a resolution, sometimes they reach an
impasse and what is needed is a neutral third party or mediator to break down the obstacles to
resolution. Mediations are extremely productive processes in my experience. First, the parties
have to agree to the process and who to appoint as mediator.The skill of the mediator is in the
process, rather than the subject matter of the dispute.The role of the mediator is not to act as
arbitrator or evaluator, but to challenge each party about their case and seek out the redress they
are prepared to accept or offer.
The mediation process is private and confidential. A typical mediation agreement requires
the parties not to rely on anything disclosed within the process of the mediation in future
litigation (assuming the mediation does not result in resolution). A mediation can be as short
or as long as the parties are prepared to commit to.The court will expect (but not impose on)
litigating parties to try some form of alternative dispute resolution (ADR), and mediation tends
to be the most used in malpractice cases. If a resolution is reached, it can be embodied in a
court order or agreement that becomes legally enforceable. It is an elegant form of resolution
and far easier on the parties (patient and doctor), as it is usually held in a private location that
is relatively informal.
To revert to the cost of dispute resolution, in the last ten years the costs of dealing with
medical malpractice has soared. A National Audit Office 2017 Report found that in 61% of
cases (involving the NHS), the claimant’s legal costs of pursuing a claim were greater than
the value of the damages the claimant recovered.16 One reason cited for such high costs is the
length of time it typically takes to resolve a dispute – in 2016/2017 the average time was 426

16 National Audit Office, Managing the Costs of Clinical Negligence in Trusts (National Audit Office 2017) www.nao.or
g.uk/report/managing-the-costs-of-clinical-negligence-in-trusts/ accessed 9 November 2020.

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days, compared with only 300 days in 2010/2011.The reason for these delays is unclear. Some
commentators suggest the delay is caused by defence lawyers taking an unreasonably defensive
stance even when liability is established. However, the introduction of qualified one-way costs
shifting (QOCS) is also cited as a potential cause.
Although the rules used to be that the losing party paid the costs of the successful party, this
is no longer the case. Following the introduction of QOCS in 2013, it is unlikely (unless the
claimant’s case is struck out or involves fraud) that the defendant will obtain (if they win) an
enforceable costs order against a claimant in a claim involving medical malpractice.17 As such,
logic would suggest that a claimant, often on a no-win-no-fee type arrangement, has less incen-
tive, or nothing to gain, in settling the claim early and at a sensible figure, as there is no cost
penalty if they do not.Whilst the defence can make an offer to settle, bear in mind this will usu-
ally be after the injury has been done, the lawyers instructed, and all their efforts have gone into
ensuring that, at the point in time that the claim is actually presented to the hapless defendant
(and their indemnifier or insurer), a relatively large sum in legal costs has already been incurred.
It has not helped that for many claims that arise from NHS treatment, there has been little or
insufficient incentive or resource aimed at tackling early resolution. An NHS body may know
something has gone wrong, they may have undertaken their investigations and come clean, as
the duty of candour requires, and do little but then wait until they are presented with a claim,
when the smart thing would have been to offer redress, early. Logically, this entire approach (sit
back and wait for the claim to arrive) must inflate both the sum required to settle a claim and
the claimant’s legal costs. It also plays to the regular complaint that the NHS does not proactively
investigate and deal with medical errors, unless they arise from a potentially hugely expensive
obstetric claim.
The NHS Resolution CEO, Helen Vernon, talks about the ‘robust’ approach to challenging
claims, whilst acknowledging that the number of claims remains the same, and has done so for
over a decade. She speaks of the beneficial impact of the early notification scheme in maternity-
type cases, and so identifies a clear link between early action and better, i.e. at least less costly,
outcomes.18
Many healthcare organisations do not effectively learn from their past mistakes.They do not
invest enough in training and risk management, dispute resolution, or better patient outcomes.
That is the real problem. Whilst that problem remains, it is pointless tinkering with the cost
of claims, for example with capped costs, which is what the government has said it intends to
introduce.
An announcement by the Department of Health on 30 January 2017 stated:

The government intends to impose a new, fixed cap on all clinical negligence cases
up to £25,000 to prevent rising litigation costs within the NHS.There are numerous
examples of lawyers who profit from the NHS by charging more than 80 times the
amount awarded to the victims in minor claims.
In one case, lawyers claimed £83,000 in legal costs for a case in which the patient was
awarded £1,000.These costs contributed to a total bill for the NHS of £1.5 billion in
financial year 2015 to 2016.

17 Civil Procedure Rules 44.13 to 44.17.

18 NHS Resolution, NHS Resolution Annual Report and Accounts 2018 to 2019 www.gov.uk/government/publicat
ions/nhs-resolution-annual-report-and-accounts-2018-to-2019

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Currently, there is no limit on legal costs that can be recouped and the money claimed
by lawyers takes vital funds away from NHS trusts. It is expected the new cap will help
the NHS save up to £45 million a year.

But that consultation hit the long grass, and there it has stayed, or as the Law Society Gazette
reported in October 2019:‘Claimant and defendant sides fail to agree clin neg fixed costs levels.’
I detect no real interest in fixed costs.Whilst capping costs would reduce the overall spending
on medical malpractice, it does seem a little bit like shutting the door after the horse has bolted.
Why not then try something even more radical, like preventing negligent errors and omissions
happening in the first place? Not an original thought.We have come part of the way with the
duty of candour. Could we go the extra mile and consider no-fault redress? Capped costs of the
type being considered by the government will impact access to redress, as fewer lawyers will find
the return on investment of the time and effort they expend acceptable relative to the capped
costs on offer for the work.The reduction in legal aid budgets severely limited access to redress,
and capping costs is likely to have a similar impact.
Also, a policy of capping costs, on its own, will look like is a rather mean policy which allows
errors to continue to happen, whilst stealing away from responsibility for investing in better
patient outcomes and pointing a finger at the very people the hapless patients and clinicians
(now claimants and defendants) turn to for assistance.Whilst no doubt the government will at
some point change the rules to try to cap costs, because it can, I cannot see that move having
any useful purpose in solving the greater problem of stopping the errors happening in the first
place.That needs investment.

Reducing claims and costs

A starting point is, of course, to ensure high clinical standards which reduce the incidents of
malpractice arising. Clinicians should also show empathy and ensure patients understand deci-
sions made about their treatment.This may actually protect clinicians from having a claim made
against them.
Early and active intervention is required when errors are made. Early proactive intervention
and redress will reduce the cost of claims, and learning from those events, if applied properly,
will reduce the number of future errors. Earlier this year in the Journal of Patient Safety and Risk
Management, author Albert Wu wrote about the ‘golden moment after an adverse event.’19 I
know exactly what he means.

The legal tests: breach of a duty of care?

Having spoken about the organisation of healthcare and indemnity and the process of finding
redress, I ought to cover the tests the courts apply in determining whether a healthcare provider
is liable or not.
Few cases dominate legal analysis around liability for medical malpractice. One is generally
referred to as Bolam or the ‘Bolam test.’20 That case decided that a doctor is not guilty of negli-
gence if they have acted in accordance with a practice accepted as proper by a responsible body
of doctors. That test is augmented by the latter case referred to as Bolitho, which required the

19 Albert W Wu, ‘The Golden Moment after an Adverse Event’ (2019) 24(5) Journal of Patient Safety and Risk
Management 179–80.
20 Bolam v Friern Hospital Management Committee [1957] 1 WLR 582.

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body of opinion that Bolam speaks about, to be reasonable, responsible, and able to stand a logical
analysis and scrutiny of risks and benefits.21
But what is the ‘responsible body’ of opinion at the moment? COVID-19 has delivered
novel times. For doctors acting outside their specialism or using a different method of assessing
patients, such as a virtual/remote consultation, will the courts apply a different test? History
suggests not, so for example, the less experienced doctor undertaking a particular healthcare task
will be judged according to the expectations of a doctor expected to be reasonably proficient in
the task they undertake. In other words – no ‘dabbling.’
This begs the question as to what is reasonable and responsible as set out in Bolitho in such
exceptional circumstances? Some commentators have suggested a new legal test would have to
be formulated, as has happened to some extent in consent cases where the Montgomery test has
effectively made the Bolam test redundant when assessing whether a patient has been appro-
priately advised of the material risks before consenting to treatment.22 Could the present crisis
result in a further move away from Bolam?

Causation
Proving breach of duty, whatever the test is, is only part of the story. Many claims fail because causa-
tion cannot be proved. Unlike a road accident causing injury where a driver may be held to blame,
people having treatment usually have an underlying condition that requires them to have that treat-
ment,so one is always looking to see what would have happened anyway,even if negligence is proved.

Conclusion
Where we seem to be is that patients can expect healthcare to be available, but will find that fund-
ing decisions and resource management means that for some the healthcare they need will not be
available.That public healthcare exists is down to the existence of laws that require it. How it is
provided can be inconsistent.Accessing healthcare that a patient needs and is denied is difficult, and
may involve seeking to challenge the decision-making process through the courts. Once healthcare
is provided, errors might result in injury.Whilst many changes have come along to try to manage
the ever-increasing cost of seeking redress, there are just too many commercial interests, and possi-
bly little effective government interest, to change things sufficiently to make the difference required.
It is clear that the medical profession as a whole, and the NHS in particular (and of course
the wider interested public), cannot afford the continuation of the current situation. It would
be good to see less partisan support for the status quo and the lip service paid to change, or less
tinkering with peripheral issues that do not address fundamental problems, and see real collabo-
ration on better patient outcomes and a no fault process that provides effective redress.
This approach would ensure that a process exists that is reasonably free from the contention
that applies to medical negligence litigation as revealed by Lord Woolf as long ago as 2006 that:

it was the area of medical negligence that the civil justice system was failing most con-
spicuously to meet the needs of litigants.23

This could allow for improved application of a right to safe healthcare.

21 Bolitho v Hackney Health Authority [1998] AC 232.

22 Montgomery v Lanarkshire Health Board [2015] UKSC 11.
23 Lord Woolf, Access to Justice – Final Report (2006) https://webarchive.nationalarchives.gov.uk/20060213223540/
http://www.dca.gov.uk/civil/final/contents.htm accessed 9 November 2020.

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Against Medical Accidents 2017) www.avma.org.uk/?download_protected_attachment=HSSIB-br
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Department of Health and Social Care, Appropriate Clinical Negligence Cover (Department of Health and
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Fenn, Paul, Fixed Costs for Clinical Negligence Claims: A Cost Analysis Approach (2018) https://assets.publi
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 15
PATIENT SAFETY AND
HUMAN RIGHTS
Helen Hughes

Introduction
One of the earliest maxims in healthcare emphasises the importance of patient safety, ‘First, do
no harm.’Yet avoidable harm is a persistent theme in healthcare systems worldwide, with the
need to significantly improve patient safety in all countries, whatever their stage of economic
development.
While there is a wealth of literature on patient safety as a discipline and its practical impli-
cations for healthcare, how this relates to the right to health and human rights is a relatively
underexplored area. In this chapter, we will focus on patient safety and human rights, providing
case studies showing where patients’ human rights are not being honoured.
First, I will explain what we mean by patient safety and set out the current global scale of
unsafe care, before demonstrating how the right to health also gives people a right to safe care.
I will then look at the relationship between patient safety and human rights, using the legal
framework in the United Kingdom (UK) as a basis and drawing on several examples of where
we, and others, consider patient safety to be a human rights issue. Finally, I will return to the
broader issue of avoidable harm, addressing why this continues to persist and what action needs
to be taken to create a patient safety future.

What is ‘patient safety’?

Patient safety is the absence of preventable harm to a patient during the process of healthcare,
and the reduction of risk of unnecessary harm associated with healthcare to an acceptable mini-
mum. An ‘acceptable minimum’ refers to the collective notions of given current knowledge,
resources available, and the context in which care was delivered, weighed against the risk of
non-treatment or other treatment.1
As a discipline, patient safety has emerged with the evolving complexity of healthcare sys-
tems and the resulting rise of avoidable patient harm. It aims to identify and reduce the risk of
harm to patients.

1 WHO,‘Patient Safety’ www.who.int/patientsafety/en/ accessed 29 October 2020.

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The global scale of unsafe care

Unsafe care is an issue that impacts healthcare provision across the world. The World Health
Organization (WHO) estimates that adverse events resulting from unsafe care are one of the
ten leading causes of death and disability worldwide.2 A recent Organization for Economic
Cooperation and Development (OECD) report assessed the health burden of patient harm at 64
million disability-adjusted life years a year, comparable to the global disease burden of HIV/AIDS.3
The human impact of unsafe care is stark:

• In high-income countries, the WHO estimates as many as one in ten patients is harmed
while receiving care in hospital.4
• It is estimated that in the UK, Canada, and the Netherlands around 5% of hospital deaths
are due to preventable safety issues.5
• In low- and middle-income countries, it is estimated that one in four hospitalisations result
in harm, resulting in 2.6 million deaths annually.6

As well as the tragic loss of life and long-term impact of patients’ health and well-being, there is
also a huge financial burden associated with unsafe care.The direct cost of unsafe care in devel-
oped countries is estimated at 12.6% of health expenditure.7 When excluding errors that may
not be preventable, this figure is 8.7% of health expenditure, which still represents a staggering
$606 billion annually.8
While these figures focus on direct costs, the broader economic impact is potentially far
greater. A study by Charles Andel et al. noted that, in 2008, the cost of medical errors in the
United States cost around $19.5 billion, with 87% of this directly associated with additional
medical costs.9 When taking into account the wider economic impact, applying quality-adjusted
life years, they estimated that the total cost was perhaps $1.1 trillion annually.10
Unsafe care also comes with consequences that are considerably more difficult to quantify, such as:
• The physical and psychological discomfort of patients who experience remedial treatment,
longer hospital stays, or disability because of avoidable harm;
• Diminished trust in the healthcare system and professionals by patients; and

2 WHO, ‘Patient Safety Fact File’ (WHO, 2019) www.who.int/features/factfiles/patient_safety/patient-safety-fact

-file.pdf?ua=1 accessed 29 October 2020.
3 OECD and Saudi Patient Safety Centre (SPSC), ‘The Economics of Patient Safety: From Analysis to Action’
(OECD and SPSC October 2020) www.oecd.org/health/health-systems/Economics-of-Patient-Safety-Oc
tober-2020.pdf accessed 2 November 2020.
4 WHO, Global Patient Safety Action Plan 2021–2030 (WHO 2020) www.who.int/docs/default-source/patient-safety
/1st-draft-global-patient-safety-action-plan-august-2020.pdf?sfvrsn=9b1552d2_4 accessed 2 November 2020.
5 H Hogan, R Zipfel, J Neuburger, A Hutchings, A Darzi, and N Black, ‘Avoidability of Hospital Deaths and
Association with Hospital-Wide Mortality Ratios: Retrospective Case Record Review and Regression Analysis’
(2015) 351 h3239 BMJ www.bmj.com/content/bmj/351/bmj.h3239.full.pdf accessed 2 November 2020.
6 OECD and SPSC (n 3); National Academies of Sciences, Engineering, and Medicine, Crossing the Global Quality
Chasm: Improving Health Care Worldwide (National Academies of Sciences 2018) www.nap.edu/catalog/25152/
crossing-theglobal-quality-chasm-improving-health-careworldwide accessed 2 November 2020.
7 OECD and SPSC (n 3).
8 ibid.
9 C Andel, SL Davidow, M Hollander, and DA Moreno, ‘The Economics of Health Care Quality and Medical
Errors’ (2012) 39(1) Journal of Health Care Finance https://pubmed.ncbi.nlm.nih.gov/23155743/ accessed 2
November 2020.
10 ibid.

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• Loss of morale and impact on well-being on healthcare workers who are not able to pro-
vide the best care possible and may be unfairly blamed for system errors.
Taken together, the human and economic case for tackling unsafe care and improving patient
safety is indisputable and urgent.

Is the right to healthcare, the right to safe care?

Having established that unsafe care is a major global health challenge, it is important to also
consider how this is positioned within the wider context of the right to health.A human rights–
based approach to health provides a set of clear principles for setting and evaluating health policy
and service delivery, targeting discriminatory practices and unjust power relations that are at the
heart of inequitable health outcomes.11
In pursuing a rights-based approach, the WHO states that health policy, strategies, and pro-
grammes should be designed explicitly to improve the enjoyment of all people to the right to
health, prioritising those most in need. The former United Nations High Commissioner for
Human Rights, Mary Robinson, has stated:

The right to health does not mean the right to be healthy … but it does require
governments and public authorities to put in place policies and action plans which
will lead to available and accessible healthcare for all in the shortest possible time.To
ensure that this happens is the challenge facing both the human rights communities
and public health professionals.12

But does the right to health give people the right to safe care?
The right to health (Article 12 of the International Covenant on Economic, Social and
Cultural Rights [ICESCR]) includes the following core components: availability, accessibility,
acceptability, and quality.13 Quality is a key component of universal health coverage and includes
the experience as well as the perception of healthcare. Quality health services should be:

• Safe – avoiding injuries to people for whom the care is intended;

• Effective – providing evidence-based healthcare services to those who need them;
• People-centred – providing care that responds to individual preferences, needs, and values;
• Timely – reducing waiting times and sometimes harmful delays;
• Equitable – providing care that does not vary in quality on account of gender, ethnicity,
geographic location, and socio-economic status;
• Integrated – providing care that makes available the full range of health services throughout
the life course; and
• Efficient – maximising the benefit of available resources and avoiding waste.

Therefore, when looking at issues of unsafe care, we need to ask:When health and social care
systems fail to prevent avoidable harm, do they fail to provide the right to health?

11 WHO, ‘Human Rights and Health’ (WHO, 29 December 2017) www.who.int/news-room/fact-sheets/detail/

human-rights-and-health accessed 2 November 2020.
12 DP Evans, ‘You Have the Right to … Health?’ (Medscape, 3 March 2005) www.medscape.com/viewarticle
/499688#vp_2 accessed 2 November 2020.
13 UN Committee on Economic, Social and Cultural Rights (CESCR), General Comment No. 14:The Right to the
Highest Attainable Standard of Health (Art. 12 of the Covenant) (11 August 2000, E/C.12/2000/4).

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Patient safety as a human rights issue

The application of human rights in health and patient safety is, to a great extent, dependent
on the domestic legislation in a country. In this chapter, I will draw on examples showing the
relationship between patient safety and human rights specifically in the UK. Before looking at
these examples in more detail, I will establish the existing legal framework around human rights
and healthcare in the UK.

Legal framework in the UK

Human Rights Act 1998
All public authorities in the UK, including National Health Service (NHS) England and NHS
Improvement (NHSE&I) and individual NHS trusts (and bodies exercising publication func-
tions such as private healthcare providers) must comply with obligations under the Human
Rights Act 1998 (HRA) and the Equality Act 2010. Under the HRA, public authorities such as
NHSE&I and NHS trusts must act in accordance with the European Convention on Human
Rights (ECHR), including

• The right to life (Article 2);

• Freedom from torture and inhuman or degrading treatment (Article 3); and
• Protection from discrimination in respect of the enjoyment of these rights and freedoms
(Article 14).

The Equality and Human Right Commission (EHRC), the non-departmental public body
in England and Wales responsible for the promotion and enforcement of equality and non-
discrimination laws, states that, in a medical context, Article 2 ECHR requires public authori-
ties, such as NHSE&I and NHS trusts, to have effective administrative and regulatory systems in
place to protect patients from professional incompetence which results in death.Where there is
a real and immediate risk of a patient committing suicide,Article 2 ECHR also requires public
authorities to do all they reasonably can to prevent the patient doing so.
Under Article 3 ECHR, public authorities must not subject patients to treatment that is
inhuman or degrading.They should also do all they reasonably can to protect patients who are
at a real and immediate risk of self-harm or of being harmed by others.
Under Article 14 ECHR, public authorities are required to ensure that the rights and free-
doms set out in the Convention, including those listed earlier, are enjoyed by everyone without
discrimination on the basis of sex, race, colour, language, religion, political or other opinion,
national or social origin, association with a national minority, property, birth, or other status.
Articles 2 and 3 ECHR also place an obligation on the state and its agencies to ensure that an
independent official body carries out an effective public investigation into any death for which
the state might be responsible and into any incident where there are clear indications that seri-
ous ill treatment may have occurred. Case law makes it clear that there should not only be a
‘lack of hierarchical or institutional connection but also a practical independence’ between the
investigator and investigatee.14

14 Al-Skeini v United Kingdom (Application No 55721/07) https://hudoc.echr.coe.int/fre#%7B%22itemid

%22:[%22001-105606%22]%7D.

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Equality Act 2010

The Equality Act 2010 protects individuals with protected characteristics from discrimination
and promotes a fair and more equal society. Section 149 of the Equality Act 2010 requires public
authorities and those exercising a public function to comply with a general duty to have due
regard to the need to eliminate unlawful discrimination, harassment, and victimisation; advance
equality of opportunity between different groups; and foster good relations between different
groups.
In order to have due regard to the general duty, public authorities, such as NHSE&I and
NHS trusts, must collect and publish information on people who share protected characteristics
and who are affected by their policies and practices.15

United Nations Convention against Torture and Other Cruel,

Inhuman or Degrading Treatment or Punishment

The EHRC suggests that NHSE&I should be particularly mindful of the obligations under
Article 14 of the United Nations Convention against Torture and Other Cruel, Inhuman or
Degrading Treatment or Punishment that requires the state (including its agencies) to ensure
that victims of torture or ill-treatment have a right to obtain redress. The Committee against
Torture has clarified that the right to obtain redress includes the right to satisfaction and guar-
antees of non-repetition.16

Human rights and healthcare

How does this legal framework on human rights in the UK apply to health and social care ser-
vices in practice? Citizens Advice, a network of advice charities, identifies Articles 2, 3, 5, 8, and
14 ECHR as potentially applicable for accessing health or care services.17 Public bodies must
respect these rights when commissioning, planning, and providing individuals with health or
care services. Here we will consider how three of these may impact on the planning and provi-
sion of services.

Article 2 ECHR – the right to life

This is the right that means nobody can try to end your life and that you have a right to be
protected when your life is at risk. Healthcare providers should consider this when they make
decisions that may affect an individual’s life expectancy. Examples of where this may become
relevant could be where a patient in hospital has a do not attempt resuscitation (DNAR) form
placed on their file without their consent or where an individual has died as a result of neglect
or mistreatment.

15 The Equality Act 2010 (Specific Duties and Public Authorities) Regulations 2017 www.legislation.gov.uk/uk
dsi/2017/9780111153277/contents accessed 4 November 2020.This specifies that Monitor and the NHS Trust
Development Authority may jointly comply with the obligations imposed by these Regulations as if they were
a single public authority.
16 UN Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment, General
Comment No 3 to the Committee against Torture. Implementation of Article 14 by States Parties (19 November 2012).
17 Citizens Advice, ‘Protecting Your Human Rights When Using Health and Care Services’ www.citizensadvice
.org.uk/health/discrimination-in-health-and-care-services/taking-action-about-discrimination-in-health-and-
care-services/protecting-your-human-rights-when-using-health-and-care-services/ accessed 2 November 2020.

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Article 3 ECHR – the right not to be tortured or treated in an inhuman or degrading way

This right is intended to provide protection against serious harm and degrading treatment. In a
healthcare context, an example where Article 3 has been violated could be cases where patients
have received very poor care and treatment in a hospital or any other care setting.

Article 5 ECHR – the right to liberty and security

This article focuses on a person’s right not to be detained against their will unless it is allowed
by law. In healthcare, this can have salience where patients have mental health issues, where they
may have been unduly restrained or secluded, or where the reasons for detention have not been
properly reviewed or followed.

Equality and healthcare

As noted, the legal framework in the UK incorporates not only human rights but related legisla-
tion focused on preventing discrimination because of the Equalities Act 2010.This has been an
area of increasing focus for patient safety in the UK in recent years. Despite this increased focus,
the EHRC states that NHS organisations still do not systematically collect or publish patient
safety equality information that would allow understanding of whether unsafe care is systemati-
cally biased and discriminatory of those with protected characteristics under the Equality Act
2010.Without this, we are therefore reliant on specialist reports and the voice of campaigners to
identify evidence of inequality and avoidable harm.
Patient Safety Learning,18 the charity of which I am chief executive, has collated examples from
patient groups and formal reports where there appears to be systematic bias in the access to safe
care for many patients.

Learning disabilities and autism

Patients with learning disabilities, autism, or both, can encounter difficulties when accessing
NHS services and have much poorer experiences than the general population. Many inquiries
and investigations have found that some NHS trusts are failing to adequately respect and protect
people’s rights, with devastating consequences for them and their families.
This issue is exacerbated by a skills deficit in the healthcare workforce, meaning that people’s
needs are sometimes being misunderstood or responded to inappropriately. As a result of these
failings, people with learning disabilities or autism can be put at risk of preventable, premature
death and a grossly impoverished quality of life.19

18 See www.patientsafetylearning.org/. Patient Safety Learning is a charity and independent voice for patient safety.
It harnesses the knowledge, enthusiasm, and commitment of healthcare organisations, professionals, and patients
for system-wide change and the reduction of harm. Patient Safety Learning believes that patient safety is not just
another priority; it is a core purpose of health and social care. Patient safety should not be negotiable.
19 NHSE&I, The Learning Disability Improvement Standards for NHS Trusts (NHSE&I June 2018) www.england.nhs
.uk/wp-content/uploads/2020/08/v1.17_Improvement_Standards_added_note.pdf accessed 02 November
2020; National Quality Board, ‘National Guidance on Learning from Deaths’ (updated 5 February 2018) https
://www.england.nhs.uk/publication/national-guidance-on-learning-from-deaths/ accessed 2 November 2020.

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Mental health

There are a range of well-known and documented patient safety risks for people experienc-
ing mental health difficulties, such as suicide and serious harm within adult mental healthcare
pathways, and falls, violence, and aggression within dementia care pathways.20 A recent review
by Bethan Thibaut et al. found that there is a lack of research on what is required to make
patient safety improvements at a system level in mental healthcare, in contrast to that in physical
healthcare.21 They also noted that there has been a lack of focus on managing the physical health
of people living with serious mental health conditions. It was also noted by them that the latter
were twice as likely to die prematurely and much more likely to develop long-term conditions
or become disabled, compared to those without serious mental illness.22

Race and ethnic background

There is also an increasing number of concerns being raised that highlight the intersection
between race, ethnic background, and patient safety.23 A recent prominent example of this has
emerged from the COVID-19 pandemic. In the first wave in the UK, black people were found
to be 1.9 times more likely to die from COVID than white people.The reasons for this appear
to be a complex mix of socio-economic determinants of health, with Public Health England
reporting that structural racism could also play a part:

Historic racism and poorer experiences of healthcare or at work may mean that indi-
viduals in BAME [Black,Asian, and minority ethnic] groups are less likely to seek care
when needed or as NHS staff are less likely to speak up when they have concerns
about Personal Protective Equipment (PPE) or risk.24

Another issue that has received more recent interest is disparities in maternal mortality rates,
with black women in the UK five times more likely than white women to die during pregnancy
or childbirth.25 The campaign group Fivexmore has been at the forefront of raising awareness of
this disparity and opened an official UK Government and Parliament petition calling for more
research into this and for steps to be taken to urgently improve healthcare for black women.26

20 The Health Foundation, Safer Care Pathways in Mental Health Services: Hertfordshire Partnership NHS Foundation
Trust www.health.org.uk/improvement-projects/safer-care-pathways-in-mental-health-services accessed 27
October 2020.
21 B Thibaut, LH Dewa, SC Ramtale et al.,‘Patient Safety in Inpatient Mental Health Settings:A Systematic Review’
(2019) 9 e030230 BMJ Open https://bmjopen.bmj.com/content/9/12/e030230 accessed 2 November 2020.
22 ibid.
23 Hysterical Women, ‘Introducing Black Women’s Health Matters’ (Hysterical Women, 30 September 2020) https:/
/hystericalwomen.co.uk/2020/09/30/introducing-black-womens-health-matters/ accessed 2 November 2020.
24 Public Health England, Beyond the Data: Understanding the Impact of COVID-19 on BAME Groups (Public Health
England 2020) https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/
file/892376/COVID_stakeholder_engagement_synthesis_beyond_the_data.pdf accessed 2 November 2020.
25 Maternal, Newborn and Infant Clinical Outcome Review Programme,‘Saving Lives, Improving Mothers’ Care’
(MBRRACE-UK, November 2018) www.npeu.ox.ac.uk/assets/downloads/mbrrace-uk/reports/MBRRACE
-UK%20Maternal%20Report%202018%20-%20Web%20Version.pdf accessed 2 November 2020.
26 Fivexmore, ‘Black Women in the UK Are Five Times More Likely to Die in Pregnancy and Childbirth’ www
.fivexmore.com/ accessed 2 November 2020; UK Government and Parliament Petitions, Improve Maternal
Mortality Rates and Health Care for Black Women in the UK https://petition.parliament.uk/petitions/301079
accessed 30 October 2020

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The relationship between patient safety and human rights: practical examples
There is clearly a close relationship between reducing avoidable harm and upholding human
rights, specifically the right not to be tortured or treated in an inhuman or degrading way, the
right to liberty, and the right to life. Having highlighted this, I will now focus on some current
issues in UK healthcare where the failure to address patient safety can be seen to be as a failure
to meet human rights obligations.
These examples sit within the broader context of the NHS and its five-year Patient Safety
Strategy.27 In its initial response to the consultation on this strategy, the EHRC stated:

Complying with obligations under equality and human rights law is not only a matter
of legal compliance; it will help NHSI ensure that its Strategy focuses on improving
patient safety in a truly transparent and accountable way that respects the rights of
patients and of their families/carers.28

The EHRC said that increased transparency and accountability would go some way to ensure
that concerns raised by families and patients are not ignored and provide a way for the govern-
ment to ensure that patients’ rights to obtain redress in accordance with the Convention against
Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment are upheld.29 The
EHRC referred specifically to the case of Gosport Memorial Hospital, where the Secretary of
State for Health and Social Care stated that ‘more than 100 families raised concerns over more
than two decades, [who] were ignored and patronised.’

Failing to learn and act on that learning

Sir Liam Donaldson, author of the seminal report into learning from adverse events in the NHS,
An Organisation with a Memory, stated that ‘to err is human, to cover up is unforgiveable and to
fail to learn is inexcusable.’30
The tragedy of the last 20 years since the publication of this report is that, although health-
care systems now pay more attention to patient safety, there are still shockingly large numbers
of patients dying or suffering avoidable harm.31 Healthcare organisations are failing to act on
learning from investigations into unsafe care. Healthcare systems are incredibly complex and,

27 NHS England and NHS Improvement, The NHS Patient Safety Strategy: Safer Culture, Safer Systems, Safer Patients
(NHS England and NHS Improvement July 2019) https://improvement.nhs.uk/documents/5472/190708_P
atient_Safety_Strategy_for_website_v4.pdf accessed 2 November 2020.
28 EHRC, Our Response to the NHS Improvement Consultation on Developing a Patient Safety Strategy (EHRC February
2019) www.equalityhumanrights.com/sites/default/files/consultation-response-nhs-improvement-national-patie
nt-safety-strategy.docx accessed 2 November 2020.
29 House of Commons, Gosport Independent Panel (Volume 649, 21 November 2018) https://hansard.parliament
.uk/Commons/2018-11-21/debates/50E27409-872C-411A-BC37-C86CF039EF45/GosportIndependentPan
el accessed 2 November 2020. In the case of Gosport Memorial Hospital, the Secretary of State for Health
and Social Care stated that ‘more than 100 families raised concerns over more than two decades, but they were
ignored and patronised.’
30 Liam Donaldson, An Organisation with a Memory: Report of an Expert Group on Learning from Adverse Events in the
NHS Chaired by the Chief Medical Officer (2000) https://webarchive.nationalarchives.gov.uk/20130105144251/ht
tp://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_4065
086.pdf accessed 2 November 2020.
31 WHO,‘Patient Safety Fact File’ (WHO, September 2019) www.who.int/features/factfiles/patient_safety/patient
-safety-fact-file.pdf?ua=1 accessed 2 November 2020.

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many would argue, not been designed for safety in the way that other safety-critical industries
have developed.
There are many requirements for healthcare providers to undertake investigations into seri-
ous incidents, to identify causal factors, to act for service improvement, and to prevent avoidable
harm.There is evidence that

• These requirements are inadequate in identifying the underlying causal factors that lead to
unsafe care. It is not sufficient to identify what happened and by whom; we need to under-
stand why to inform action for improvement.32
• The recommendations from these inquiries, reports, research, and investigations, even when
accepted, do not lead to action that is applied consistently across the whole healthcare
system.
• Learning from incidents is not widely applied, thereby preventing action being taken in
other areas to prevent harm.33

If it is to act on its commitment and adherence to human rights legislation and patient safety
good practice, the NHS should urgently and demonstrably implement the recommendations of
the many regular and specifically commissioned reports into unsafe care.These include:

• Reports from the Healthcare Safety Investigation Branch;

• Serious incident investigation reports conducted by NHS organisations;
• Coroners’ Prevention of Future Deaths reports;
• Regulatory reports by the Care Quality Commission (CQC);
• Independent reviews by professional bodies such as the Royal Colleges;
• Parliamentary and Health Service Ombudsman reports;
• Inquiries commissioned by the Secretary of State for Health and Social Care, such as Mid
Staffordshire, Morecambe Bay, Gosport, Cumberlege Review, and Paterson Inquiry;34 and
• Inquiries commissioned by the Secretary of State that are still pending publication, such as
Liverpool Community Health, Shrewsbury and Telford, and East Kent.

32 Parliamentary and Health Service Ombudsman, A Review into the Quality of NHS Complaints Investigations
(Parliamentary and Health Service Ombudsman) www.ombudsman.org.uk/sites/default/files/A_review_into_
the_quality_of_NHS_complaints_investigations_where_serious_or_avoidable_harm_has_been_alleged.pdf
accessed 2 November 2020; NHS Improvement, The Future of NHS Patient Safety Investigation (NHS Improvement
March 2018) https://improvement.nhs.uk/documents/2525/The_future_of_NHS_patient_safety_investigat
ions_for_publication_proofed_5.pdf accessed 2 November 2020.
33 Parliamentary and Health Service Ombudsman, A Review into the Quality of NHS Complaints Investigations
(Parliamentary and Health Service Ombudsman) www.ombudsman.org.uk/sites/default/files/A_review_into_
the_quality_of_NHS_complaints_investigations_where_serious_or_avoidable_harm_has_been_alleged.pdf
accessed 2 November 2020.
34 Robert Francis QC, Report of the Mid Staffordshire NHS Foundation Trust Public Inquiry (The Stationary Office
2013) https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/2791
24/0947.pdf accessed 2 November 2020; Bill Kirkup, The Report of the Morecambe Bay Investigation (2015) https://
assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/408480/47487_M
BI_Accessible_v0.1.pdf accessed 2 November 2020;The Right Reverend James Jones KBE, Gosport War Memorial
Hospital:The Report of the Gosport Independent Panel (The Stationary Office 2018) www.gosportpanel.independ
ent.gov.uk/media/documents/070618_CCS207_CCS03183220761_Gosport_Inquiry_Whole_Document.pdf
accessed 2 November 2020.;The Independent Medicines and Medical Devices Safety Review, First Do No Harm
(8 July 2020) www.immdsreview.org.uk/downloads/IMMDSReview_Web.pdf accessed 02 November 2020.

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In the UK, the number of deaths resulting from patient safety incidents annually is estimated at
11,000.35 In failing to learn from these incidents and not fully implementing the recommenda-
tions stemming from investigation reports, how much serious harm could have been avoided? In
this context, a failure to act on this evidence could be considered a breach of a patient’s human
rights, where such action would have prevented death, serious harm, and/or future avoidable
harm.

Failing to listen to patients and act on their concerns

Patients’ experiences are a vital source of insight that can be used to help identify patient safety
problems, better understand their causes, and inform remedial measures to prevent harm from
recurring. However, a recurring theme of patient safety scandals is that patients’ views are too
often overlooked or disregarded.
One example of this is in the findings of the Independent Medicines and Medical Devices
Safety (IMMDS) Review, published in July 2020.This report examined how the healthcare sys-
tem in England responded to reports about the harmful side effects from medicines and medical
devices.36 It focused on safety issues relating to three medical interventions: hormone pregnancy
tests, sodium valproate, and pelvic mesh implants.
The review’s findings highlighted a shocking scale and severity of avoidable harm over a
period of several decades.The inquiry chair, Baroness Julia Cumberlege, stated that that she and
members of her team had never encountered anything like this before – the intensity of suf-
fering, the fact that it has lasted for decades, and the sheer scale of harm.The exact numbers of
those affected by safety issues from these interventions is not known but is estimated to be in
the tens of thousands. Baroness Cumberlege also commented that if the physical, developmental,
and emotional harm were not enough, these families had to fight to be listened to and to be
taken seriously.
A theme running throughout the review findings was a healthcare system – which includes
the NHS, private providers, regulators and professional bodies, manufacturers, and policymakers
– that was disjointed, siloed, unresponsive, and defensive. A serious consequence of this is that
patients are not adequately recognised as the sole purpose of the system, with a failure to listen
to their concerns.
A second less high-profile example of a failure to listen to patient concerns, that has been
raised directly with Patient Safety Learning, is women who experience painful hysteroscopy pro-
cedures.37 In these cases, women are suffering avoidable harm where good practice is not being
implemented consistently and where patient harm is not being prevented or recorded.
The existing system in the UK provides incentives that result in a reduction in access to
anaesthesia for painful procedures, and women often find that they are not given information
that enables them to make informed decisions. Despite years of work, many groups campaigning
for pain-free hysteroscopies say they are not being listened to, that women continue to experi-
ence avoidable extreme pain, and that, despite questions to Parliament and numerous efforts to
promote their cause, they are yet to receive an official acknowledgement, response, and action
from the NHS.

35 NHS England and NHS Improvement, The NHS Patient Safety Strategy (n 27).
36 The Independent Medicines and Medical Devices Safety Review (n 34).
37 Patient Safety Learning’s the hub, Painful hysteroscopy www.pslhub.org/forums/topic/68-painful-hysteroscopy/
accessed 2 November 2020.

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In both the cases covered by the IMMDS review and the experiences of women who have
had painful hysteroscopy procedures, the common link is of patients not being listened to and
action not being taken to address unsafe care. Responsible parties who knew, or should have
known, about the scale of avoidable harm should have taken immediate action. But they did
nothing, for years. Is that not a breach of human rights?

Restrictive practice and people with learning disabilities and/or autism

Too often, people with learning disabilities and/or autism receive poor care while in hospital,
which is, at times, undignified and inhumane.
An example of this from a patient safety and human rights perspective is the issue of restric-
tive practice, highlighted in a recent report by the health and social care regulator, the CQC, in
2020.This was prompted by a BBC Radio programme in 2018 which highlighted the increased
use of restraints on adults with learning disabilities in hospital units.38 This was not the first time
such issues have been highlighted, with the Mansell Report having highlighted issues of restric-
tive practice back in 2008 and, more recently in 2019, the high-profile case of abuse and undue
use of restraints at Wholton Hall Hospital.39
The CQC report found cases where physical restraint was a normal part of the culture, with
cases of patients secluded or segregated for 13 years.40 This review shows that, for some people
who need complex care, the system let them down:

People told us that when they were restrained it could often re-traumatise them and
have a lasting impact on their mental health.They told us that it felt like they were at
times not seen as human or equal because they were completely powerless.41

In 2015, Public Health England reported that every day in England 30,000 to 35,000 people
with a learning disability are prescribed psychotropic medicines when they do not have a mental
health condition.42 The CQC found in its review that several types of chemical restraints were
used to control people’s behaviour. Such actions run contrary to good practice guidance, such
as the principles of STOMP (stopping over medication of people with a learning disability,

38 BBC News,‘“Shameful” use of restrains on disabled patients’ BBC News (2 October 2018) www.bbc.co.uk/news
/uk-45652339 accessed 2 November 2020.
39 J Mansell, ‘Services for People with Learning Disabilities and Challenging Behaviour or Mental Health Needs’
(October 2007) https://webarchive.nationalarchives.gov.uk/20130124041359/http://www.dh.gov.uk/prod
_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_080128.pdf accessed 2 November
2020.; BBC News,‘Whorlton Hall: Hospital “Abused”Vulnerable Adults’ BBC News (22 May 2019) www.bbc.co
.uk/news/health-48367071 accessed 2 November 2020.
40 CQC, Out of Sight – Who Cares? A Review of Restraint, Seclusion and Segregation for Autistic People, and People with
a Learning Disability and/or Mental Health Condition (CQC October 2020) www.cqc.org.uk/sites/default/files/
20201023_rssreview_report.pdf
41 ibid.
42 Public Health England, Prescribing of Psychotropic Medication for People with Learning Disabilities and Autism (Public
Health England July 2015) https://webarchive.nationalarchives.gov.uk/20160704152031/https://www.improv
inghealthandlives.org.uk/publications/1248/Prescribing_of_psychotropic_medication_for_people_with_le
arning_disabilities_and_autism accessed 2 November 2020.

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autism or both with psychotropic medicines) and STAMP (supporting treatment and appropri-
ate medication in paediatrics).43
The report notes that these issues are ‘potential abuses of human rights’ and the inappropriate
placements people have been suffering in are not a newly emerging problem.44 While there is
guidance available as to what good care looks like, this is not consistently followed, and when
things do go right for an individual in care it is ‘too often despite the system not because of it.’45
There is a clear need in these cases for the government, NHS organisations, and local author-
ities to come together to remove the barriers that have stopped people from getting the care
they need for too long. There have clearly been missed opportunities to improve the lives of
people with autism and people with a learning disability and/or mental health condition and
of those whose behaviour others find challenging. Immediate action is needed to put an end to
the abuses in human rights that are evident from this review.This action must be owned and led
from the top by government, delivered by local systems working together, and involve people
and their families to ensure the needs of individuals are met.

Private hospitals not meeting patient safety standards

In the UK, there is a significant independent acute healthcare sector which provides a range of
healthcare services, some of which are self-funded by patients through medical insurance and
others directly commissioned by the NHS.Where there are deficiencies in safety in these ser-
vices, can they be held accountable as breaching human rights issues?
In a recent inspection, the CQC found that two-fifths of private hospitals in the UK were
not meeting basic patient safety standards, giving 30% of the 206 private hospitals it inspected a
‘requires improvement’ rating.46 The main areas of concern the CQC cited were around safety
and leadership.
Issues noted by the inspection report included:

• Lack of a culture of learning from incidents;

• Weaknesses in safety incident reporting;
• Lack of formalised governance procedures; and
• In some hospitals, lack of oversight and monitoring of consultants working under practis-
ing privileges.

Commenting on the report, the not-for-profit human rights organisation Each Other has high-
lighted several key human rights issues in relation to private healthcare, patient safety, and human
rights.47 Each Other notes that it may be difficult to act on these issues as a breach of human

43 NHS England and NHS Improvement, Stopping Over Medication of People with a Learning Disability,Autism or Both
(STOMP), www.england.nhs.uk/learning-disabilities/improving-health/stomp/ accessed 2 November 2020.
44 CQC, Out of Sight – Who Cares? (n 40).
45 Stephen Bubb, Winterbourne View – Time for Change: Transforming the Commissioning of Services for People with
Learning Disabilities and/or Autism (2014) www.england.nhs.uk/wp-content/uploads/2014/11/transforming-c
ommissioning-services.pdf accessed 2 November 2020.
46 CQC, The State of Care in Independent Hospitals (CQC April 2018) www.cqc.org.uk/sites/default/files/state-care
-independent-acute-hospitals.pdf accessed 2 November 2020.
47 Each Other, ‘40% of Private Hospitals Failing Patient Safety Standards – Can Human Rights Help?’ (11 April
2018) https://eachother.org.uk/health-watchdog-reports-concerns-about-patient-care-and-safety-in-private-h
ospitals/ accessed 2 November 2020.

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rights because the HRA in the UK generally only applies to public bodies, but where such
organisations are providing NHS services and performing public functions, this may be appli-
cable. In its inspection role, Each Other notes that the CQC can address human rights issues
through its own powers or by referral to the EHRC.48
While this CQC report focuses on the independent sector more broadly, another high-
profile example of issues of unsafe care in the private setting was the malpractice of surgeon Ian
Paterson, a breast surgeon who was jailed for 20 years in 2017 after being convicted of wound-
ing with intent.49
The inquiry into this case took evidence from more than 200 patients, and it is estimated that
Paterson could have harmed more than 1000 patients.The inquiry stated that this was ‘the story
of a healthcare system which proved itself dysfunctional at almost every level when it came to
keeping patients safe, and where those who were the victims of Paterson’s malpractice were let
down time and time again.’50
Analysing the inquiry’s findings in February 2020, Patient Safety Learning highlighted con-
cerns that this may become yet another report of unsafe care where sympathetic noises are made
but no real learning and change occurs.51 Eight months on from the report’s publication, the
government has yet to provide a formal response to the report and its recommendations.
As stated earlier, how can the public be assured that there will not be future harm if there
are repeated failures to learn from patient safety incidents? As the inquiry chair said,‘it is wishful
thinking that this could not happen again.’52 Could this failure to act, and prevent possible future
harm, again be seen as a potential breach of a patient’s right to safe care?

Do not resuscitate forms and patient consent

Earlier in this chapter, I considered Article 2 of the Human Rights Act, the right to life, provid-
ing an example of the use of DNAR forms without the patient’s or family member’s consent.
This has been clearly been established as a human rights issue in the UK, with the case David
Tracey took to the High Court and Court of Appeal after his wife, Janet, who had terminal
lung cancer, had a do not attempt cardiopulmonary resuscitation (DNACPR) notice put in her
records by her hospital without consultation. The appeal court declared in 2014 that this had
violated her rights under Article 8 ECHR in failing to involve her in the process.53 The court
held that the patient must be involved unless the doctor thinks that this would cause distress and
that the distress might cause the patient harm.54
DNAR forms and consent have re-emerged as a major issue in the UK during the first wave
of the COVID-19 pandemic, specifically in relation to care home residents.A survey of care staff
carried out by the Queen’s Nursing Institute International Community Nursing Observatory

48 CQC, Human Rights Approach to Regulation www.cqc.org.uk/sites/default/files/20180205%20Human%20rights

%20approach%20infographic%20REVISED%20FINAL.pdf accessed 2 November 2020.
49 Jones (n 34).
50 ibid.
51 Patient Safety Learning, The Paterson Inquiry:Are There Any New Lessons for Patient Safety? Will There Be Any Action?
(11 February 2020) www.patientsafetylearning.org/blog/the-paterson-inquiry-are-there-any-new-lessons-for
-patient-safety accessed 2 November 2020.
52 James (n 34).
53 David Tracey v University Hospitals Cambridge NHS Foundation Trust and Secretary of State for Health (2014) EWCA
Civ 33 www.bailii.org/ew/cases/EWCA/Civ/2014/33.html accessed 2 November 2020.
54 ibid.

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 Helen Hughes

found that a major concern for staff was being told that they had to accept patients from hospitals
without knowing patients’ COVID-19 statuses, as well as not being consulted when plans were
made not to resuscitate residents (without residents or their families being consulted either).
The survey revealed that a decision had been made at a high level, asking UK care homes
to automatically label all their residents with DNAR forms. Disability activists have raised con-
cerns about the discriminatory aspect of these, stating that these type of blanket decisions would
never have been commissioned for a group of able-bodied people.55 Health and social care staff
anonymously have noted they found this blanket decision to be challenging, both ethically and
professionally. Such DNAR decisions are reported as being made for elderly residents without
any discussion with the patient, their families, or even care home staff who know them.
Concerns about this have now been escalated to the legislative level, being highlighted as
an issue at the hearings for the All-Party Parliamentary Group (APPG) for Coronavirus.56 The
CQC has been asked by the Department of Health and Social Care to investigate these con-
cerns.57 The CQC has stated that it is unacceptable for advance care plans, with or without
DNAR form completion, to be applied to groups of people of any description; decisions must
be made on an individual basis, according to need.
It will be of significant interest to see whether this review will consider that blanket DNAR
measures are a breach of human rights. In a recent report, the Joint Committee on Human
Rights (JCHR) in Parliament appears to strongly support this position, stating:

The blanket imposition of DNACPR notices without proper patient involvement is

unlawful.The evidence suggests that the use of them in the context of the COVID-19
pandemic has been widespread.58

Treatment of children in secure healthcare settings

The UK is under international and domestic legal obligations to ensure that children are not
subject to cruel, inhuman, or degrading treatment. It must comply with obligations and ensure
that children in detention are not subject to solitary confinement or unnecessary or dispropor-
tionate uses of restraint.
In its report looking at human rights issues during the COVID-19 pandemic, the JCHR
expressed its concerns about the rights of people in various types of detention.59 It referred to a
number of different settings, including those in secure healthcare settings, such as mental health
units.The JCHR concluded that the use of solitary confinement breaches the rights of children
in detention, and where it is prolonged, the rights of adults. It noted that there are risks the

55 Open Access Government, Care Homes Told to Label Residents as Do Not Resuscitate (Open Access Government 24
August 2020) www.openaccessgovernment.org/do-not-resuscitate/93223/ accessed 2 November 2020.
56 All-Party Group on Coronavirus, Oral Evidence Session 3 (12 August 2020) https://d3n8a8pro7vhmx.cloudfront
.net/marchforchange/pages/344/attachments/original/1597776197/239125_APPG_on_Coronavirus_Session_
3_TSC.pdf?1597776197 accessed 2 November 2020.
57 CQC, CQC to Review the Use of DNACPR during Pandemic (CQC 2020) www.cqc.org.uk/news/stories/cqc-rev
iew-use-dnacpr-during-pandemic accessed 2 November 2020.
58 Joint Committee on Human Rights, The Government’s Response to COVID-19: Human Rights Implications (14
September 2020) https://committees.parliament.uk/publications/2649/documents/26914/default/ accessed 2
November 2020.
59 ibid.

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measures taken during lockdown and beyond that have breached the right to family life of both
those detained and of their loved ones.
This is not a new issue for the JCHR, which in 2019 highlighted concerns about subject-
ing children to pain-inducing restraints in young offender institutions and solitary confinement
for more than 22 hours a day, stating that these should be made illegal.60 Painful restraints and
isolation cause physical distress and psychological harm in the short and long term, and are not
compliant with human rights standards.61
The United Nations (UN) special rapporteur on torture and leading child health experts
have stated that the UK government’s policy of allowing children in detention in England and
Wales to be locked alone in their cells for up to 23 hours a day under emergency COVID-19
measures is ‘extreme and inhumane’ and could lead to lifelong mental health damage.62 Since
March 2020, facilities have been able to keep children as young as 12 confined alone in their
cells for all but around 40 minutes a day.The measures, which were put in place to stop potential
COVID-19 outbreaks, affect around 500 under 18-year-olds in youth detention and another
4000 18- to 21-year-olds held in adult prisons.
Professor Nils Melzer, the UN special rapporteur on torture and other cruel, inhuman or
degrading treatment or punishment, told the Guardian that solitary confinement is so damag-
ing to children that it should never have been seen as a reasonable response to the threat of
COVID-19 infections.‘Its use should be exceptional, and, in most cases, there should be different
measures to stop the spread of COVID. These kinds of stress factors are likely to affect this young
generation for decades to come. If they spend a year like this it could affect their whole life.’
Dr Alison Steele is a consultant paediatrician and officer for child protection at the Royal
College of Paediatrics and Child Health (RCPCH), which, alongside the British Medical
Association, has called for an end to the solitary confinement of children in detention.‘It is very
clear that solitary confinement is harmful to children and young people,’ she said. ‘It damages
their health and increases the risk of self-harm and suicide.’
The justice minister,Wendy Morton, said at the time:‘It is difficult to read this report and not
conclude that we are failing some of the children in our care – that is completely unacceptable
and I am determined it will not continue.’63

Tackling unsafe care

Improving patient safety is a critical global health challenge.As I have highlighted from the dif-
ferent examples in this chapter, when health and social care systems fail to address unsafe care
and avoidable harm, there is a strong case to be made that this could be considered a breach of
a patient’s human rights.
What can be done to address the issue of unsafe care? As mentioned earlier, the scale of this
challenge is recognised by international bodies such as the WHO and OECD. Recognising
this, the WHO, in August 2020, published the first draft of a Global Patient Safety Action Plan

60 Owen Bowcott,‘End “Pain-Inducing” Restraints on Child Offenders, MPs Urge’ The Guardian (19 April 2019)
www.theguardian.com/society/2019/apr/19/end-pain-inducing-restraints-on-child-offenders-mps-urge
accessed 2 November 2020.
61 ibid.
62 Bowcott (n 60).
63 James Grierson, ‘Children in Solitary Confinement for 23 Hours a Day, Says Report’ The Guardian (21 January
2020) www.theguardian.com/society/2020/jan/21/children-solitary-confinement-prisons-england-wales accessed
2 November 2020.

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2021–2030. It sets out a vision of a ‘world in which no patient is harmed in healthcare, and
everyone receives safe and respectful care, every time, everywhere,’ and outlines a set of strategic
objectives and actions to help achieve this.64
While this global call for action is welcome, to tackle unsafe care we need to understand
why this problem stubbornly continues, despite an increased interest and focus on patient safety,
particularly from the 1990s onwards.65

Why does unsafe care persist?

The provision of health and social care is complex, with failures in patient safety being a sys-
temic issue where

• Patient safety is often not regarded as a core purpose of health and social care by leaders,
but merely one priority of many that is negotiable;
• Organisations do not take ‘all reasonable and practical steps’ to improve patient safety;
• There are no organisational standards for patient safety, with approaches to improvement
often being insufficient and inconsistent;
• We focus too much on responding to, and mitigating the risk of, harm rather than design-
ing healthcare to be safe for patients and for the staff who work within it;
• We do not learn well enough or share or act on that learning for patient safety;
• Staff working in healthcare are not ‘suitably qualified and experienced’ for patient safety
and are not properly supported by leaders and specialists in safety design and human factors;
• Patients are not sufficiently engaged in their safety during care and after harm, patients need
to be part of the team;
• We do not have good ways of measuring and improving performance for safe care; and
• A culture of blame and fear undermines our ambitions to design and deliver safer care.

Taken together, these underlying issues translate into a recurring range of practical patient safety
failures in healthcare, such as diagnostic errors, medication errors, insufficient infection control,
unsafe surgery, and risks to staff safety that themselves create patient safety issues.66
An increased focus on patient safety encourages learning from good practice as well as
investigations into unsafe care. We should understand risk and share knowledge to implement
improvement initiatives. However, if we are to tackle the wider systemic causes, we need to
think and act differently to make the transformational change needed to realise a patient-safe
future and reduce avoidable harm.

Creating a patient-safe future

In health and social care, patient safety is often considered as one of several potential competing
strategic priorities.These priorities are weighed against others, with organisations and individu-

64 WHO, Global Patient Safety Action Plan 2021–2030:Towards Zero Patient Harm in Health Care – First Draft (WHO
August 2020) www.who.int/docs/default-source/patient-safety/1st-draft-global-patient-safety-action-plan
-august-2020.pdf?sfvrsn=9b1552d2_4 accessed 2 November 2020.
65 Institute of Medicine (US) Committee on Quality of Health Care in America; LT Kohn, JM Corrigan, and MS
Donaldson (eds), To Err Is Human: Building a Safer Health System (National Academies Press (US) 2000) www.ncbi
.nlm.nih.gov/books/NBK225182/ accessed 2 November 2020.
66 Patient Safety Learning, ‘Why Is Staff Safety a Patient Safety Issue?’ (Patient Safety Learning, 3 September 2020)
www.patientsafetylearning.org/blog/why-is-staff-safety-a-patient-safety-issue accessed 2 November 2020.

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als then deciding which take precedence.This approach to patient safety results in patient safety
becoming a matter of choice. In A Blueprint for Action, Patient Safety Learning makes the case
that patient safety cannot simply be just another priority of health and social care; patient safety
needs to be core to the purpose of health and social care, reflected in everything that it does.67
To help achieve this, Patient Safety Learning has identified six foundations of safer care that
should be used to ensure that patient safety is a core purpose of health and social care. Each
foundation is accompanied by practical actions:

1) Shared learning – organisations should set and deliver goals for learning from patient safety,
report on progress and share their insights widely.
2) Leadership – there should be an emphasis on the importance of overarching leadership for
patient safety across the health and social care system.
3) Professionalising patient safety – standards and accreditation for patient safety need to be
developed and implemented. These need to be used by regulators to inform their assess-
ment of safe care, with all staff trained and competent to manage risk and deliver safe care.
4) Patient engagement – organisations should encourage and support the actions necessary to
ensure patients are valued and engaged in their care and in patient safety improvement.
5) Data and insight – we need better measuring, reporting, and assessing of patient safety per-
formance, quantitative as well as qualitative data.
6) Just culture – health and social care organisations should develop programmes and publish
goals to eliminate blame and fear, introduce or deepen a just culture, and measure and
report their progress.

By focusing on designing and delivering healthcare as a safe system in this way, I believe that we
can make a significant leap forward in patient safety and the right to safe care.

Delivering the right to safe care

At the beginning of this chapter, I noted that how patient safety relates to the right to health and
human rights is a relatively underexplored issue.
I have sought to investigate this more closely, drawing on examples from the UK to dem-
onstrate where patient safety can be a seen as human rights issue.These examples are all within
the UK context – a high-income country, where the public healthcare is predominantly free at
the point of delivery. How we consider the interaction of patient safety and human rights may
differ considerably in low- and middle-income countries, where healthcare priorities and chal-
lenges substantially differ and with different legislative contexts. Further research is needed on
the relationship between patient safety and human rights in a wider range of countries.
Patient Safety Learning believes the right to healthcare is a right to safe care, and that, in order
to provide patients with this right, healthcare systems need to place patient safety at the core of
their purpose, reflected in everything they do.
The WHO’s Global Patient Safety Action plan provides a good foundation for this at a global
level, but individual countries also need to have in place system-wide leadership, culture, and

67 Patient Safety Learning, ‘The Patient-Safe Future: A Blueprint For Action’ (Patient Safety Learning 2019) https
://s3-eu-west-1.amazonaws.com/ddme-psl/content/A-Blueprint-for-Action-240619.pdf?mtime=20190701
143409 accessed 2 November 2020.

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governance frameworks to design, deliver, and share improvements in patient safety. Without
this, will we really be delivering people’s right to safe care?

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to the Highest Attainable Standard of Health (Art. 12 of the Covenant) (11 August 2000, E/C.12/2000/4).
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WHO, Patient Safety, www.who.int/patientsafety/en/ accessed 29 October 2020.

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 16
FUNDAMENTAL RIGHTS
TO HEALTH CARE AND
CHARGING OVERSEAS VISITORS
FOR NHS TREATMENT
Diversity across the United Kingdom’s
devolved jurisdictions

Jean V McHale and Elizabeth M Speakman

Introduction
Human rights are considered as universal, yet, as the debates in this book all too clearly illus-
trate, respect for such rights is far from universal across the globe, or across continents or even,
at times, within specific jurisdictions. Human rights in relation to health and healthcare can be
particularly problematic.The right to health and respect for healthcare rights are part of funda-
mental human rights declarations.They can be constructed through traditional civil and political
rights such as the right to life or the right to privacy or they may be included as a specific right
to health or to healthcare.1 The challenge in asserting such rights relates to their definition and
scope.What constitutes ‘health’ is something which remains highly contested.The World Health
Organization (WHO) definition of health is that

Health is a state of complete physical, mental and social well-being and not merely the
absence of disease or infirmity.2

1 See the 1965 International Convention on the Elimination of All Forms of Racial Discrimination,Article 5(e)(iv);
International Covenant on Economic, Social and Cultural Rights 1966,Article 12; Convention on the Elimination
of All Forms of Discrimination against Women, Articles 11(1)(f), 12, and 14 (2)(b); Convention on the Rights of
the Child 1989, Article 24; Convention on the Rights of Persons with Disabilities (2006), Article 25; CESCR
General Comment No 14:The Right to the Highest Attainable Standard of Health (Art. 12) (11 August 2000); J Tobin,
The Right to Health in International Law (OUP 2015); B Toebes, ‘Towards an Improved Understanding of the
International Right to Health’ (1999) 21 Human Rights Quarterly 261.
2 Preamble to WHO Constitution 1948.

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 Jean V McHale and Elizabeth M Speakman

This can be seen as both aspirational and unclear.3 What constitutes ‘complete mental and social
well-being’ is something which is, in itself, critically relative across time and place – something
so subjective that its full complexity can be very difficult to delineate.A narrower approach than
that of the WHO is that of seeing ‘health’ as centrally focused upon the illness of the individual,
something which is essentially that of an ‘engineering model,’ which is concerned with repair-
ing the defective human machine.4 What is ‘illness’ itself may be disputed. As Kennedy noted,
illness,

A central concept of medicine, is not a matter of objective scientific fact. Instead it is a

term used to describe deviation from a notional norm.5

Consequently, this can be a highly subjective assessment by the medical profession. Moreover,
such an engineering model necessarily avoids the engagement with broader questions which
make the machine ‘defective’ in the first place.This brings us back to the broader definition of
health. Foster and Herring see health as having a social and relational dimension.6 They have
suggested that it would be wrong to regard individuals merely as ‘atomistic, static entities.’7 A
multitude of factors external to the individual themselves can have an impact on health, as
Hervey and McHale have argued

there may be dangers in straying too far from that focus. An individual may be, or
feel, separated from potentially relevant communities. Conceptualization of relations
between individuals, and between an individual and various communities, may be
exceedingly fluid.The fact that individuals may not always operate in an isolated fash-
ion does not necessarily require us to depart entirely from a conception of ‘health’ that
is based on individuals.8

While a right to health can be seen as something where it is difficult to achieve effective protec-
tion, it can be argued that a right to healthcare may be seen as something which can be more
effectively upheld. Healthcare may be thought to be something which has an accepted meaning
at least in relation to the provision of day-to-day healthcare. Such certainty can be deceptive.
The boundaries of what constitutes healthcare can still remain highly disputed.An operation to
replace bones shattered in a road traffic accident, intravenous antibiotics given to a patient with
sepsis, or kidney dialysis would generally be seen to be the provision of ‘healthcare.’ In contrast,
in vitro fertilisation in the case of someone who sought conception but was not infertile or ‘cos-
metic’ surgery are examples of medical procedures where there may be dispute as to whether
these fall under the category of healthcare.9

3 See D Callahan,‘The WHO Definition of “Health”’ (1973) 1(3) The Hastings Center Studies 77–88.
4 J Montgomery, ‘Recognising a Right to Health’ in R Beddard and DM Hill (eds), Economic, Social and Cultural
Rights: Progress and Achievement (Macmillan 1992); and see the discussion in J Montgomery, Health Care Law (OUP
2002) 2–4.
5 I Kennedy, The Unmasking of Medicine (Allen and Unwin 1981) 7–8.
6 C Foster and J Herring,‘What Is Health?’ in M Freeman, S Hawkes, and B Bennett (eds), Law and Global Health:
Current Legal Issues,Volume 16 (OUP 2014).
7 ibid.
8 TK Hervey and JV McHale, European Union Health Law: Themes and Implications (Cambridge University Press
2015).
9 See further M Latham and JV McHale The Regulation of Cosmetic Procedures: Legal, Ethical and Practical Challenges
(Routledge 2020)

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 Charging overseas visitors for treatment

A right to healthcare as a socio-economic right is one which is to be found in more recent

human rights declarations. The assertion of such a right inevitably raises what can be acutely
difficult issues concerning questions of resources. This has also been evident in cases where
traditional civil and political rights have been used to bring claims concerning the right to
healthcare. In terms of basic emergency care provision, the European Convention on Human
Rights (ECHR) has held that failure to provide such care may constitute a breach of fundamen-
tal human rights in the context of the right to life.10 But the ECHR has never upheld a right
to demand a specific treatment whether by a citizen or by a person visiting another country
seeking treatment.11
It is also the case that the real tensions in the nature of access to healthcare and the conse-
quent level of discretion given to member states in the implementation of such rights is reflected
in the drafting of rights to healthcare which are contained in fundamental rights declarations.
So, for example, Article 3 of the European Convention on Human Rights and Biomedicine
provides:

Parties, taking into account health needs and available resources, shall take appropriate
measures with a view to providing, within their jurisdiction, equitable access to health
care of appropriate quality.12

Article 35 of the European Union Charter of Fundamental Rights and Freedoms states:

Everyone has the right of access to preventive health care and the right to benefit from
Medical treatment under the conditions established by national laws and practices. A
high level of human health protection shall be ensured in the definition and imple-
mentation of all the Union’s policies and activities.

To extrapolate from this what constitutes a right to healthcare services again is highly context
dependent. The Biomedicine Convention makes reference to ‘equitable access to health care,’
the Charter of Fundamental Rights to access to healthcare ‘under the conditions established by
national laws and practices.’ Such statements recognise that member states have discretion. In
making a decision to allocate treatment to one person, the consequence of funding a particular
operation or innovative drug is likely to be that another person or group of persons is denied
access to such resources. Unless the approach taken is inequitable or disproportionate, then
states are given a discretion in relation to the operation of access to and delivery of healthcare.
This extends to enabling states to exclude some persons such as those who are not, for example,
habitually resident or who are not part of some form of social insurance scheme from access
to healthcare resources. But what should be ‘equitable access to healthcare’? To what extent
should individuals be excluded from automatic access to healthcare resources because they are
not ‘ordinarily’ resident in a particular jurisdiction? How can compassion and care and concern
for an equitable right to healthcare be effectively squared with charging vulnerable visitors for
treatment? Furthermore, how far should this concern with resource allocation extend?

10 Mehmet Şentürk and Bekir Şentürk v Turkey (2013) 60 EHRR 4: Asiiye Genç c Turquie (Application no 24109/07),
Judgment of 27 January 2015;A Nissen,‘Right to Access Emergency Healthcare.The European Court of Human
Rights Pushes the Envelope’ (2018) 26(4) Medical Law Review 693.
11 Scialaqua v Italy (1998) 26 EHRR 164.
12 It should of course be noted that the UK is not a signatory to the convention, although the convention has been
used by the European Court of Human Rights in relation to specific case law.

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If healthcare itself is a universal right, then who should be excluded from access by cost of
care, who should be charged and when? This is a particularly controversial question when the
charging in question concerns those who are not residents of the country.These are particularly
challenging in the context of the United Kingdom (UK). The UK is not a signatory to the
Biomedicine Convention nor is it now a member of the European Union (EU). It is a signa-
tory to the ECHR, and provisions of the ECHR are enforceable in domestic law through the
Human Rights Act 1998. This, as we shall see, makes actually challenging resource allocation
decisions concerning healthcare and migrants and ‘overseas visitors’ problematic. But that does
not mean that these issues can or should be ignored. Put bluntly, in an increasingly globalised
world, to what extent is it justifiable to charge those overseas visitors to the UK who seek treat-
ment in a National Health Service (NHS) system free at the point of delivery? What practical
problems may arise when a healthcare system established with the precise aim that healthcare
should be free at the point of delivery is told to charge a specific group of patients who happen
to be ‘overseas visitors’? In enforcing a charging system, what is the impact on the equitable and
proportionate delivery of healthcare? And, indeed, do the ‘harms’ of refusing treatment on the
lack of ability, to pay justify the costs? These are the issues we explore in this chapter.We take
as our case study the charging of overseas visitors in the NHS in the context of the changing
landscape in the devolved jurisdictions.
The extent to which overseas visitors should be charged for NHS care is something which
has been a matter of controversy for many decades.13 The continual financial and staffing pres-
sures facing the NHS are well known. In the never-ending struggle to save costs and balance
budgets, use of the NHS by overseas visitors has become a highly contentious issue in England,
often linked to political positions on immigration.14 However, it is administratively challenging
and risks inequity, sometimes being presented as an example of the ‘hostile environment’ (the
Conservative government policy to deter unlawful migrants).15 In 2015 and again in 2017 the
approach to charging overseas visitors in England was radically tightened by the Conservative
government.16 However, some 30 years since comprehensive NHS charging regulations were
introduced in 1989, statistics for the number of overseas visitors treated, cost recovery, and
administrative costs remain limited, undermining attempts to undertake an accurate cost-benefit
assessment.
Moreover, while the whole question of charging and the legitimacy of the approach taken
in England has generated considerable media engagement and controversy, there has not been
the same level of media or indeed academic focus on this issue in Scotland,Wales, or Northern
Ireland. Nonetheless, the last few years have led to a push to re-evaluate the approach taken from
what was a notably more generous approach in relation to Scotland and Wales at least. In the
next section the chapter compares and contrasts the different rules currently in place across the
jurisdictions with the UK.

13 See JV McHale and EM Speakman, "Charging ‘overseas visitors’ for NHS treatment, from Bevan to Windrush
and beyond." Legal Studies 40.4 (2020): 565-588.
14 Home Office,‘Enforcing the Rules.A Strategy to Ensure and Enforce Compliance with Our Immigration Laws’
Home Office March 200713-14.
15 C Jayanetti, ‘NHS Denied Treatment for Migrants Who Can’t Afford Upfront Charges’ The Guardian (13
November 2018).
16 The NHS (Charges to Overseas Visitors) Regulations 2015, as amended 2017.

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 Charging overseas visitors for treatment

Charging overseas visitors for healthcare: divided nation(s)

For the first few decades of its existence, the NHS had no comprehensive system for charg-
ing overseas visitors.17 When charging regulations were eventually introduced in 1982, this was
against a backdrop of claims that the administrative process required to collect payment was
likely to be complex, possibly racist, and would put undue pressure on NHS staff.18 Moreover,
it was argued the low numbers of chargeable visitors were unlikely to make that process cost-
effective. But, as the financial pressures on the NHS increased over time, views began to change.
The reasons for that financial strain were multifactorial, including straitened political budgets,
the increased demands of an ageing population, and expensive new drugs and medical technol-
ogy. It is unclear to what extent the use of the NHS by overseas visitors drew on healthcare
resources, but it is beyond doubt that the number of overseas visitors to England in particular
has greatly increased over the years.Also, as charging foreign visitors for healthcare was standard
practice in other countries (including those charging British citizens needing treatment abroad),
it was argued that this would simply bring the UK into line with the rest of the world.19
The NHS Act 1977 gave the government power to make regulations to charge non-resident
patients in England and Wales,20 and these powers were established in Scotland by section 98 of
the National Health Service (Scotland) Act 1978.The regulations were finally introduced by the
Conservative government in the 1980s. Although the legal duty to charge overseas visitors for
healthcare applies UK-wide, the precise mechanisms for charging are implemented via second-
ary legislation and, thus, the governments of Scotland,Wales, and Northern Ireland have been
able to apply their own policy approaches to charging.This has led to an increasing divergence
between England and the devolved jurisdictions.
The tougher approach taken in England to charging third-country visitors was introduced
under the former Secretary of State for Health, Jeremy Hunt, in 2015. It has been linked to the
party’s hostile environment policy on immigration and as an attempt to counter allegations of
exploitation of the NHS by ‘foreigners.’21 This policy is still relatively recent and was reported
as initially leading to much higher cost recovery – from £73 million in 2012–2013 to £289
million in 2015–2016 (although this included £164 million from the new health surcharge).22
However, it has also been highly controversial with accusations of administrative complexity,
excessive pressure on NHS staff, and inequity.23 The denial of healthcare to many from the
‘Windrush’ generation resulted in an expensive compensation scheme.24 Some reports suggest
that the more restrictive regulations in England have deterred vulnerable migrants from access-

17 H Carty,‘Overseas Visitors and the NHS’ (1983) 5 Journal of Social Welfare and Family Law 258.
18 HC Deb 17 March 1982,Vol 20, cols 411–52.
19 ibid.
20 National Health Service Act 1977, s 121.
21 C. Jayanetti,‘Upfront Fees “Deterring Immigrants from Seeking NHS Care”’ The Guardian (18 April 2019).
22 National Audit Office, Department of Health, Recovering the Cost of NHS Treatment for Overseas Visitors (28
October 2016).
23 L Hiam and M McKee,‘Upfront Charging of Overseas Visitors Using the NHS’ (2017) BMJ j4713.
24 The Windrush generation is a term related to the arrival of migrants from the Caribbean on the boat the Empire
Windrush in 1948 and in the period to 1970. Controversy arose in relation to threats and steps taken as part of
the hostile environment to deport such persons from the UK.The steps taken by the Home Office ultimately led
to the resignation of the then Home Secretary Amber Rudd and to the establishment of a compensation scheme.
https://www.gov.uk/apply-windrush-compensation-scheme. See A Gentleman, The Windrush Betrayal: Exposing
the Hostile Environment (Guardian Faber, 2019); A Gentleman, ‘UK to Pay up to £200m in Compensation to
Windrush Victims’ The Guardian (3 April 2019).

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 Jean V McHale and Elizabeth M Speakman

ing necessary medical treatment.25 There have been calls for charging to be abandoned due to
its adverse impacts.Although the government had promised to release reliable statistics on cost-
recovery and cost-benefit, these are still not forthcoming.
Today, a series of separate statutory instruments operate across the devolved jurisdictions.
In England the current applicable regulations are the NHS (Charges to Overseas Visitors)
Regulations 2015 further amended in 2017. In Scotland and Wales, the relevant regulations are
the National Health Service (Charges to Overseas Visitors) (Scotland) Regulations 1989 and
the National Health Service (Charges to Overseas Visitors) Regulations 1989. In contrast to
England, both sets of regulations have since 1989 only been subject to minor amendments, the
most recent in 2014 and 2009 for Scotland and Wales, respectively.26 In Northern Ireland the
Health Services (Persons Not Ordinarily Resident in Northern Ireland) Regulations (Northern
Ireland) were passed in 1970. These were more restrictive than those in other jurisdictions in
the UK as they applied not only to hospital services but also extended charging to primary care.
Charging exemptions were generally limited to persons who fell within the categories of inter-
national agreements with the UK.27 The regulations were reformed in 2005,28 and then, after
a review in 2014, new regulations were produced in 2015.29 While there are some similarities
with the other jurisdictions in the UK, as we shall see, Northern Ireland has some distinctive
elements.
In all parts of the UK, emergency care is free to all, however, once an overseas visitor leaves
accident and emergency care, then their care may become chargeable. Access to free secondary
healthcare is residency not citizenship based.This means that the person may be charged unless
they can prove that they are ‘ordinarily resident’ in the UK or unless they fall into one of the
categories which are excepted under the legislation.The meaning of ‘ordinary residence’ is that
which was established in the case of R v Barnet London Borough Council, Ex parte Shah:30

Ordinary residence is established if there is a regular habitual mode of life in a par-

ticular place ‘for the time being’,‘whether of short or long duration’, the continuity of
which has persisted apart from temporary or occasional absences.The only provisos are
that the residence must be voluntary and adopted ‘for a settled purpose’ … Ordinary
residence is proven more by evidence of matters capable of objective proof than by
evidence as to state of mind.31

25 K O’Donnell, ‘Transparency Is Needed on NHS Charges for Migrants and Data Sharing Agreements’ (thebm-
jopinion, 13 May 2013) https://blogs.bmj.com/bmj/2019/05/13/creating-a-hostile-environment-for-migrants
-transparency-is-needed-on-nhs-charges-and-data-sharing-agreements-in-nhs-england/#:~:text=Transparency
%20is%20needed%20on%20NHS%20charges%20for%20migrants%20and%20data%20sharing%20agreements
,May%2013%2C%202019&text=Timely%20access%20to%20healthcare%20depends,and%20individuals%20w
hich%20provide%20it accessed 20 October 2020.
26 The National Health Service (Charges to Overseas Visitors) (Scotland) Amendment Regulations 2014, No 70;
The National Health Services (Charges to Overseas Visitors) (Amendment) Regulations 2009, No 1512.
27 Northern Ireland Human Rights Commission (2011), Access Denied – Or Paying When You Shouldn’t (January
2011).
28 Provision of Health Services to Persons not Ordinarily Resident Regulations (Northern Ireland) 2005 SI 2005
No 551.
29 Provision of Health Services to Persons not Ordinarily Resident Regulations (Northern Ireland) 2015 SI 2105
No 7.
30 [1983] 2 AC 309.
31 UK Visas and Immigration, ‘Guidance. Ordinary Residence’ (5 January 2011) https://assets.publishing.service
.gov.uk/government/uploads/system/uploads/attachment_data/file/258236/ordinaryresidence.pdf accessed 20
October 2020.

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 Charging overseas visitors for treatment

Section 39 of the Immigration Act 2014 further clarified that the fact that a person has indefi-
nite leave to remain (ILR) ‘on its own is not sufficient since that person may no longer be, for
example, residing in the UK on a properly settled basis, and may only be visiting.’32 Since 2015,
visitors from non-European Economic Area (EEA) countries33 who want to stay in the UK
for limited periods (for example to work, study, or for family reasons) were required to pay an
‘immigration health surcharge’ of £400 per year at the time of their visa application.34 Once
paid, this gives individuals access to free NHS treatment. If an individual cannot establish that
they are ordinarily resident, they may still be exempt from charge, either because of their own
status or that of their treatment. In terms of the length of time for ordinary residence, this has
been suggested as a period of 6 months in Scotland.35 In contrast, in Northern Ireland, a period
of ordinary residence is seen as 12 months.36
Although there are different regulations across the devolved jurisdictions there are also some
similarities.Across all the jurisdictions, individuals who are exempt from charging include, while
the UK is in the transition period from leaving the EU, those from EEA member states and also
countries with which the UK has reciprocal health agreements, a group known as ‘vulnerable
patients,’ prisoners, UK government employees, and war pensioners.37 ‘Vulnerable patients’ are
a broad group. They include refugees,38 asylum seekers,39 and failed asylum seekers and their
dependants (but in England this only applies if they are receiving support such as accommoda-
tion or care from the Home Office or a local authority),40 children who are looked after by a
local authority, victims and suspected victims of modern slavery,41 where there are exceptional
humanitarian reasons,42 and anyone receiving compulsory treatment under a court order or
who is detained in a hospital or deprived of their liberty are also included.43

32 Department of Health and Social Care, Guidance on Implementing the Overseas Visitor Charging Regulations, February
2020, para 3.10.
33 EEA countries are member states of the European Union, Iceland, Liechtenstein, and Norway. Switzerland is not
a member of the EU or EEA but is also included in this group under special arrangements.
34 This health charge was introduced by the Immigration (Health Charge) Order 2015 No 792.
35 Scottish Government, ‘“Overseas Visitors” Liability to Pay charges for NHS Care and Services’ CE 09, April
2010, para 5. Also see UK Visas and Immigration (n 31) para 11.15 in relation to the discussion of the ‘baseline
questions.’
36 Provision of Health Services to Persons not Ordinarily Resident Regulations (Northern Ireland) 2015, Part 1,
para 5.
37 UK Visas and Immigration (n 31) 54–55 and 15.
38 Those granted asylum, humanitarian protection, or temporary protection under the immigration rules and their
dependants.
39 Those applying for asylum and humanitarian protection whose claims, including appeals, have not yet been
determined, and their dependants.
40 Receiving support under section 4(2) of the 1999 act from the Home Office or those receiving support from a
local authority under Part 1 (care and support) of the Care Act 2014 or section 35 or 36 of the Social Services
and Well-Being (Wales) Act 2014, by the provision of accommodation.
41 As determined by a designated competent authority, such as the UK Human Trafficking Centre or the Home
Office.This includes their spouse/civil partner and any children under 18, provided they are lawfully present in
the UK.
42 An overseas visitor who has been granted leave to enter the UK outside the immigration rules in whose case the
Secretary of State for Health determines there to be exceptional humanitarian reasons to provide a free course of
treatment.This exemption will also apply to their child and/or companion who is authorised to travel with them,
for whom the exemption is limited to treatment, the need for which arose during the visit, and cannot await until
they can reasonably be expected to leave the UK.
43 For example, under the Mental Health Act 1983 or the Mental Capacity Act 2005.

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Apart from emergency care, other medical treatments which are exempt from charging
across the jurisdictions of the UK include family planning services (although not termination of
pregnancy) and treatment of certain specified infectious diseases, including pandemic influenza,
COVID-19,44 and sexually transmitted diseases.45 However, maternity care, other than in the
context of emergency treatment, is chargeable across the jurisdictions. An attempt in 2020 by a
woman in England who had been subject to female genital mutilation to bring a judicial review
action claiming that the impact of the current charging regime for migrants has the effect of
delaying or totally deterring or stopping pregnant women, women giving birth, or those who
need postnatal treatment, and who was charged £10,636 for her own maternity care which she
is currently repaying at a rate of £10 per month, was unsuccessful.46
All jurisdictions are required to abide by the Human Rights Act 1998 and the Equality Act
2010 in avoiding any discrimination or inequality in implementing the charging regulations.
So, for example, they cannot refuse treatment on grounds of race, gender, age, religion, or sexual
orientation.47 They must also avoid discrimination in the process of identifying whether or not
patients might be chargeable. One common – and controversial – feature is that the government
in each jurisdiction is expected to inform the Home Office of any unpaid healthcare debts of
£500 or more.48 This may then be grounds for refusing entry or a stay in the UK in the future,
until the debt is paid.
In addition, currently, EU citizens are specifically exempted from charge in the NHS
Charging Regulations applicable in each of the four jurisdictions due to the UK as a result of
the continuation of existing rights under the transition period. Post the transition period, unless
an EU national is lawfully in the UK, for example because they have acquired what is known
as settled status and is ordinarily resident, then they will become liable to be charged under the
respective overseas visitors charging regulations. However, if bilateral agreements are obtained,
then the position will change.The new Healthcare (European Economic Area and Switzerland
Arrangements) Act 2019 provides a legal framework for implementing bilateral healthcare
arrangements with an individual EEA state, Switzerland, or the EU if these are agreed. It pro-
vides power to fund healthcare provided within those countries and powers to give effect to
healthcare arrangements and healthcare agreements. It also provides the Secretary of State with
the power to process necessary healthcare data for those arrangements.49 The devolved govern-
ments were consulted during the passage of this legislation and the act incorporates a legal obli-
gation to continue to do so in the future.50 The legal requirement to consult with the devolved
jurisdictions which has been incorporated in the new legislation, together with the decision to
limit the act to EEA visitors rather than all third-country nationals, mean that alignment and
consistency will be ensured at least at the outset. In this case at least, a UK-wide approach will
be followed, with little evidence of divergence.
There has been particular concern to safeguard reciprocal rights to healthcare between
Northern Ireland and the Republic of Ireland, which is a feature of the Common Travel Area

44 See, for example, The Provision of Health Services to Persons Not Ordinarily Resident (Amendment).
Regulations (Northern Ireland) 2020 No 25.
45 Part 3(c).
46 D Taylor,‘Woman Loses Legal Challenge to NHS Charges for Pregnant Migrants’ The Guardian (1 July 2020).
47 UK Visas and Immigration (n 31), ss 2.8–2.14.
48 The Scottish Parliament Health and Sport Committee (2019). The current and future operation of reciprocal
healthcare schemes. SP Paper 468, 3rd Report, 2019 (Session 5) 9, s 59.
49 Healthcare (European Economic Area and Switzerland Arrangements) Act 2019, Explanatory Notes, Overview).
50 2019 Act, s 5.

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(CTA). Concerns as to the impact of Brexit on citizens resident in Ireland led to emergency
legislation being passed in the Republic of Ireland Miscellaneous Provisions (Withdrawal of the
United Kingdom from the European Union on 29 March 2019) Act 2019, which includes safe-
guards in relation to health care.This has now been superseded by the Withdrawal Agreement
between the UK and the EU.A Memorandum of Understanding signed on 8 May 2019 between
the UK and Irish government states that the

CTA affords British citizens residing in Ireland and Irish citizens residing in the UK
the right to access emergency, routine and planned publicly funded health services in
each other’s state, on the same basis as citizens of that state.51

Although this is a memorandum of understanding and not a treaty provision and thus not bind-
ing in international law, any attempt to resile from this could have considerable implications for
patients on both sides of the border.
While there are some common features between the jurisdictions in relation to charging
overseas visitors, some distinct differences do exist, and we turn next to explore them.The dif-
ferences reflect, first, the rationale for the regulations and the concerns around health ‘tourists’;
second, the organisations which are required to charge; and, third, the nature of the charging
process itself.

The rationale for charging: a matter of ‘health tourism’?

While charging regulations applicable in England have been revised many times since 1989,
becoming progressively more stringent until the current iterations in 2015 and 2017,52 the
situation in the devolved jurisdictions is somewhat more complex.The Welsh regulations were
initially identical to those in England and, even today, they represent a gradual evolution rather
than a radical change in approach.This is also the case in Scotland, where the provisions of the
original 1989 regulations largely still apply. Over time, there have been calls for changes in both
those jurisdictions due to concern regarding ‘health tourism,’ but these concerns, as we shall see,
have been very different in dimension and in scale to those of England. In contrast, in Northern
Ireland, separate regulations have been in force since the 1970s and, although there are some
similarities, there is also some divergence.53
Differences in the approach taken across the four jurisdictions are due to both a considerable
difference in visitor numbers (and, therefore, far fewer potentially chargeable overseas visitors)
as well as a difference in political approach. In Northern Ireland, the issue of overseas visitor
charging was discussed during debate in the Northern Ireland Assembly prior to the issue of the
2015 regulations.54 The debate indicated concern about the risk of being overgenerous which

51 UK Government and the Government of Ireland, Memorandum of Understanding between the Government of the
United Kingdom of Britain and Northern Ireland and the Government of Ireland (8 May 2019) para 9.
52 The NHS (Charges to Overseas Visitors) Regulations 2015, SI 2015/238 as amended by The National Health
Service (Charges to Overseas Visitors) (Amendment) Regulations 2017, SI 2017/756.
53 Health Services (Persons Not Ordinarily Resident in Northern Ireland) Regulations (Northern Ireland) 1970.
Northern Ireland Assembly Committee for Health, Social Services and Public Safety, ‘Official Report on
Provision of Health Services to Persons Not Ordinarily Resident (Amendment) Regulations (Northern Ireland)
2014 and the Health and Personal Social Services (General Medical Services Contracts) (Amendment No 1)
Regulations (Northern Ireland) 2014: DHSSPS Officials’ (17 September 2014).
54 Northern Ireland Assembly Committee for Health, Social Services and Public Safety (2014).

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might encourage ‘health tourism,’ particularly from the Republic of Ireland.55An official from
the Department of Health, Social Services and Public Safety confirmed that this was being
monitored:

There is an access to health care team in the BSO [Business Services Organisation],
which was set up to look at not just the guidance and at making sure that health care
service staff are fully aware of who has a right to access health care but at how they
identify and manage people who are coming in who maybe do not have health care.
However, the team also looks at how we identify people who are potentially access-
ing health care either fraudulently or illegally.The whole culture change in the health
service is a bigger aspect. 56

In 2016, the former Northern Ireland Health Minister, Edwin Poots, raised concerns about the
cost of health tourism in the jurisdiction.57 The charging of overseas visitors in Northern Ireland
has an added political dimension in light of Brexit and with questions raised as to the continued
entitlements of citizens on either side of the border to access to healthcare (see later).
In contrast, both the Scottish and Welsh governments have resisted attempts to portray ‘health
tourism’ as a major problem.58 For example, a Sunday Times report from 2016 on a £2 million
unpaid debt from foreign nationals with the headline ‘Scotland “needs experts to fight health
tourism”’ was rebutted by the Scottish health secretary, Shona Robison, who argued that most
bills are paid, procedures were in place for debt recovery, and the amount owed was ‘a very small
proportion’ of the total Scottish health budget of £12 billion.59 Similarly, in 2017 the Welsh
government planned to review its overseas visitors charging regulations, but the Welsh health
secretary,Vaughan Gething, said that this was a ‘marginal area’ and

Really, when you’re talking about the central funding of the health service, with the
big challenge that we face, the actual conversation about charging people from abroad
is an absolute distraction.60

For many years, the majority party in Scotland has been either Labour or the Scottish National
Party, and they have repeatedly restated an intention to offer a welcoming environment to for-
eign visitors, whether tourists or migrants.The subject of charging overseas visitors for health-
care has only very occasionally arisen in the Scottish parliament. In a debate in 2005, the
Scottish Executive stated that it does not keep records of overseas visitors who have been
refused free NHS treatment under the Scottish regulations.61 In another parliamentary debate

55 ibid 8.
56 ibid.
57 C McCullough, ‘DUP’s Poots Blasts “Health Tourism” as NHS Translators Cost NHS £9.3m in Three Years in
Northern Ireland’ Belfast Telegraph (28 November 2016).
58 T Martin, ‘Foreign Health Patients Saddle Scottish NHS with £3m Bill’ Express (11 February 2019) https
://www.express.co.uk/news/uk/1085564/foreign-health-patients-leave-scottish-NHS-3m-bill-latest-scotland
(Express, 11 February 2019) https://www.express.co.uk/news/uk/1085564/foreign-health-patients-leave-sco
ttish-NHS-3m-bill-latest-scotland accessed 20 October 2020.
59 M Macaskill,‘Scotland “Needs Experts to Fight Health Tourism”’ The Times (10 January 2016).
60 BBC News,‘NHS Foreign Visitor Charges Reviewed by Vaughan Gething’ BBC News (1 March 2017).
61 The Scottish Parliament Written Answers Wednesday 2 November 2005, Mr Andy Kerr: S2W-19910.

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on 6 November 2013, the Conservative MP Alex Johnstone queried a potential cost recovery of
£200 million per year. In reply, the SNP Minister for Public Health, Michael Matheson, stated:

The number of migrants … in England is different from that in Scotland. We view

migrants as an important part of the Scottish economy.They are provided with health-
care in the same way as other individuals in Scotland are. … The figure that Alex
Johnstone referred to is probably pretty excessive. There is no evidence whatever of
such a level of expenditure in Scotland and no indication from any of our boards of
difficulties that have resulted from the number of migrants who use healthcare ser-
vices. It is important to treat people equally and fairly when they are in Scotland.We
should not try to use our healthcare system to manage immigration and migration.62

In March 2017 a charity, Maternity Action, identified that women with insecure immigration
status requiring maternity care might not meet the ‘ordinary residence’ test and this was risking
the health of the women and their babies. A debt of £500 or more would be notifiable to the
Home Office and risk any future immigration applications:

Recent research by Maternity Action found that vulnerable migrant women are
avoiding maternity care or skipping some scans and appointments in order to reduce
their debt to the NHS.This puts the health of mother and baby at risk and exacerbates
existing health inequalities.63

This evidence was submitted to a Scottish government Equalities and Human Rights Committee
inquiry with a plea that the Scottish government retain its exemption of healthcare charging
for failed asylum seekers. In response to a parliamentary question in a debate on 7 January 2019,
the Scottish government confirmed64 that it did not hold information centrally on how many
non-EU citizens have (a) presented, (b) been treated, and (c) been charged for NHS treatment
in the last 12 months, nor how much each NHS board has received for providing this treatment.
In 2018–2019, the Scottish Parliament Health and Sports Committee undertook a review
of healthcare for overseas visitors.65 This was prompted by the passage of the new Healthcare
(International Arrangements) Bill introduced in the light of Brexit to regulate reciprocal health-
care arrangements post Brexit.The bill was subsequently limited to focus on the arrangements
with EEA countries, renamed and passed as the Healthcare (European Economic Area and
Switzerland Arrangements) Act 2019. However, the Health and Sport Committee debated the
question before the bill was amended including access to care for non-EEA visitors. Paul Gray,
the outgoing director general for health and social care and chief executive of NHS Scotland,
made clear the less stringent approach taken in Scotland. For example, there is no obligation
placed on GPs to identify or report a patient’s country of origin:

62 The Scottish Parliament, The Scottish Parliament Official Report, Meeting of the Parliament, col 24042 (6 November
2013).
63 Maternity Action, Submission to the Equalities and Human Rights Committee Inquiry into Destitution, Asylum and
Insecure Immigration Status in Scotland (March 2017).
64 Scottish Government Debate, Constitution and External Affairs, 17 January 2019, S5W-20837: Response to
question from Kezia Dugdale (Scottish Labour).
65 The Scottish Parliament Health and Sport Committee (2019).The Current and Future Operation of Reciprocal
Healthcare Schemes. SP Paper 468, 3rd Report, 2019 (Session 5).

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 Jean V McHale and Elizabeth M Speakman

we encourage GPs to establish a person’s country of origin but we do not wish to

deprive people of primary healthcare services, so we have not so mandated.66

Also, that

the culture of the NHS in Scotland is to provide care to people who need it and to ask
questions later. I am not ashamed of that.We should recover money when we legiti-
mately can and we should observe the regulations and provisions that are in place.67

The Committee endorsed an approach which would be more rigorous in improving cost recov-
ery, while taking the position that ‘our best foot forward is to treat the person who presents with
a need, and to seek the recovery afterwards.’68
In February 2019, the Scottish Parliament Health and Sport Committee published its review:
‘The Current and Future Operation of Reciprocal Healthcare Schemes.’69 This reports an accu-
mulated debt (over the previous five years) of around £3 million for healthcare provided to
third-country nationals.With regard to EEA visitors, it was noted that, although such patients
had received treatment in Scotland, not all Scottish health boards were participating in the
European Health Insurance Card (EHIC) incentive scheme which would give them a payment
from central UK government for each such patient treated. Some health boards stated that they
did not currently identify EEA citizens ‘because it was not cost effective to gather this data.’70
This suggests very small numbers of applicable patients.The review recommended a more con-
sistent approach across Scottish health boards (including participation in the EHIC incentive
scheme) and more efficient efforts at cost recovery. However, there is no mention of any inten-
tion to restrict eligibility in future.
Parliamentary debates do indicate an awareness among the devolved jurisdictions that their
more generous policy might risk ‘health tourism’ within the UK, whereby overseas visitors
might cross the border to have healthcare more easily and/or cheaply than in England because
of the tighter regulations operating there. But while all jurisdictions have been monitoring this
risk, they have each reported little evidence of such health tourism actually occurring.71 Yet,
if there is such little evidence for health tourism, then this raises the question as to whether a
detailed charging regime can be seen as an effective proportionate approach to restricting access
by overseas visitors to what can be seen as a fundamental human right.We return to this later.

The NHS organisations which are required to charge for services

A further notable difference between England and the devolved jurisdictions relates to which
organisations providing NHS services are obliged to charge. In England, the 2017 amended
regulations now place responsibility for charging patients on all organisations that provide NHS

66 The Scottish Parliament Health and Sport Committee (2018). Official Report, Health and Sport Committee, 32nd
Meeting 2018, Session 5 (11 December 2018) 31.
67 ibid 10.
68 The Scottish Parliament Health and Sport Committee (2018) 11.
69 The Scottish Parliament Health and Sport Committee (2019),‘The Current and Future Operation of Reciprocal
Healthcare Schemes,’ SP Paper 468, 3rd Report, 2019 (Session 5), 11 F.
70 ibid 4, para 10.
71 The Scottish Parliament Health and Sport Committee, 2019, p 6, para 33; Northern Ireland Assembly Committee
for Health, Social Services and Public Safety, 2014.

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services, not simply on NHS bodies themselves.72 The charging system also applies to private
and voluntary sector providers. Secondary care services provided outside of a hospital setting,
such as community health services, are also no longer exempt. In contrast, these services remain
exempt across the devolved jurisdictions. England has, however, introduced exemptions for pal-
liative care services, services provided as part of the NHS111 telephone advice line (a service
only currently available in England), and treatment required for a physical or mental condition
caused by torture, female genital mutilation, domestic violence, or sexual violence.73 None of
these is a specified exempt category in the devolved jurisdictions, although, for example if a
patient presented requiring treatment for a violent injury it is likely that this would fall within
the category of ‘exceptional humanitarian grounds’ recognised in the devolved jurisdictions,
and, therefore, still be exempt from charge.
Currently, primary care is exempt from charge for overseas visitors in most of the UK.This
is reflective of the different contractual status of GPs and the different operational structures
of primary care as opposed to hospital medicine. However, over the last few years the NHS in
England has considered extension of charging to GP services.74 Initial consultation feedback
was, however, that this was unpopular with GPs and, furthermore, there were also concerns
expressed on public health grounds that charging will dissuade people from accessing necessary
medical care.75 In contrast, in Northern Ireland, GP services are only available free of charge
to persons who are ordinarily resident (defined as 12 months or more).76 The 2015 regulations
extended this to include those categories of visitors who are exempt from charge for secondary
care.77 Thus, overseas visitors who are not ordinarily resident, as defined by the Northern Ireland
regulations or otherwise within an exempt category, for example those living in the Republic of
Ireland or on a temporary visit to Northern Ireland, may be charged for GP services.This rep-
resents a far tougher restriction on primary care than that in the rest of the UK.78 Interestingly,
however, while GP services are not chargeable in Scotland, guidance given to GPs is again
indicative of a tightening of the system.The guidance provides that

it is for GP practices to exercise their discretion as to whether to register an overseas

visitor or to treat them privately.79

It is unclear to date how this is operating in practice. In Wales, GPs have also been exempt.While
these differences in approach between primary and secondary charging can be seen as part of
the historical legacy of distinct service provision, the inconsistent approach is notable. Overseas

72 The NHS (Charges to Overseas Visitors) Regulations 2015 (n 16).

73 National Health Service (Charges to Overseas Visitors) Regulations 2015 No. 258, Part 3, 9(f).
74 Department of Health, ‘Making a Fair Contribution. Government Response to the Consultation on the
Extension of Charging Overseas Visitors and Migrants Using the NHS in England’ (February 2017) 5.
75 ibid.
76 Provision of Health Services to Persons not Ordinarily Resident Regulations (Northern Ireland) 2015, Part 1,
para 5.
77 Northern Ireland Assembly Committee for Health, Social Services and Public Safety, 2014; Provision of Health
Services to Persons Not Ordinarily Resident Regulations (Northern Ireland) 2015, Part 3, s 24.
78 It is notable that in the Republic of Ireland upfront charges are required in relation to primary care; charges vary
and may be between 45 and 65 euros unless they fall within a specific category, e.g. they have a medical card due
to low income, and also in relation to accident and emergency care of 100 euros unless the patient falls into a
specific exempt category such as having been referred to hospital by their GP. https://www.citizensinformatio
n.ie/en/health/health_services/gp_and_hospital_services/hospital_charges.html accessed 13 November 2020.
79 3 para 4.

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visitors can see a GP for an emergency, and they can also be temporarily registered. However
the fact that an individual may not get charged once registered does not mean that they will
automatically be registered by a GP, although GPs cannot refuse to do so for ‘discriminatory
reasons.’80

The charging process itself

As we saw earlier, while there are core elements in relation to exemptions from charging which
exist across the jurisdictions, there are also some differences which exist between England and
the other devolved jurisdictions. Across the devolved jurisdictions, there are several groups of
people who are exempt from charging who would, if they were in England, be subject to charge.
So, for example, in Scotland and Wales employed persons and self-employed persons who have
started their own business are exempt and are not required to prove they are ‘ordinarily resi-
dent’ in order to be exempt from NHS charges for secondary care.81 Exemptions also apply to
full-time students in Scotland,Wales, and Northern Ireland. In Wales and Northern Ireland, the
course of study must be of at least six months’ duration or else ‘substantially funded’ by the UK
government.82 No course time limit is applied in Scotland, where the charging exemption also
applies to postgraduate students.83 The devolved jurisdictions have also taken a notably differ-
ent position to England in relation to failed asylum seekers. In all the jurisdictions of the UK,
asylum seekers are exempt from charges, whether or not the asylum application is pending,
refused, or under appeal. However, in England, amendments made in 2004 and 2011 established
that asylum seekers whose applications were refused were not ordinarily resident and no longer
exempt from charges (although this could be imposed gradually if the patient was in the midst
of treatment; known as ‘easement’). Failed asylum seekers are, however, exempt from charge if
they are receiving support from the Home Office or a local authority, as explained earlier.84 The
2004 amendments were also applied in Wales. However, as a result of lobbying by refugee sup-
port organisations, these were removed in 2009.85 In contrast, in Scotland the 1989 Charging
Regulations exempted from charge from the outset anyone who had made an application.86 In
2010, the Scottish government issued guidance confirming that the exemption applied to all
applicants, whether successful or not:

Anyone who has made a formal application for asylum, whether pending or unsuc-
cessful, is entitled to treatment on the same basis as a UK national who is ordinarily
resident in Scotland while they remain in the country.87

80 See https://www.nhs.uk/using-the-nhs/nhs-services/visiting-or-moving-to-england/how-to-access-nhs-servic
es-in-england/ accessed 13 November 2020.
81 UK Visas and Immigration (n 31).
82 NHS Wales, Implementing the Overseas Visitors Hospital Charging Regulations, Guidance for Hospitals in Wales (7
December 2009) 25, para 6.14; Provision of Health Services to Persons Not Ordinarily Resident Regulations
(Northern Ireland) 2015, Part 2, s 6.
83 The Scottish Government Healthcare Policy and Strategy Directorate, 2010, 8 para 27.
84 See UK Visas and Immigration (n 31).
85 National Health Service (Charges to Overseas Visitors) (Amendment) (Wales) Regulations 2009, No 1512.
86 National Health Service (Charges to Overseas Visitors) (Scotland) Regulations 1989, s 4(c).
87 (n 32) 9, para 32.

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 Charging overseas visitors for treatment

In Northern Ireland, under the 2005 regulations, free health services were available to those
with a pending asylum application, but this did not extend to failed asylum seekers who were
not in receipt of Home Office support.88 During debate in the Northern Ireland Assembly the
Stormont government revealed that in the course of one year there were only 28 failed asylum
seekers not in receipt of Home Office support.89 Following lobbying, the position was amended
in 2015. Failed asylum seekers are now exempt from charge for healthcare.90
What is also notable in Scotland is that there is a clear statement that the process of charging
is seen as separate from immigration. The Scottish government states explicitly on its website
that

The Scottish Government decide how healthcare is provided in Scotland.This is not

linked to immigration control, which is a matter for the Home Office.’91

Furthermore, the website goes on to state that

NHS Scotland does not pass patient details to the Home Office for the purpose of
immigration enforcement.92

This is in sharp contrast with the controversy in England regarding data sharing about immi-
gration status with the Home Office.93 In 2017, following the intervention of the Chair of the
Health Select Committee, the government agreed that data sharing arrangements between the
NHS and the Home Office for identification of illegal migrants should be removed.94 However,
in 2019, press reports indicated that Home Office immigration officers were contracted to work
within public service organisations to facilitate checks on immigration status and this service
was offered to NHS trusts.95
A further notable difference between England and the devolved jurisdictions is that the 2015
regulations provide that NHS trusts in England should apply an enhanced tariff, charging for
treatment at 150% of NHS rates. This does not apply in the devolved jurisdictions where the
same treatment would be charged at the standard NHS tariff.This may represent a difference in
liability of hundreds, if not thousands, of pounds for an individual patient. Furthermore, while
the regulations had always required trusts to establish eligibility to pay before providing second-

88 See Law Centre NI,‘Refused Asylum Seekers and Access to Free Secondary Healthcare’ https://www.lawcentr
eni.org/component/content/article/63-policy-briefings/865-refused-asylum-seekers-and-access-to-free-secon
dary-healthcare.html accessed 13 November 2020.
89 Northern Ireland Assembly Committee for Health, Social Services and Public Safety (2014).
90 Provision of Health Services to Persons not Ordinarily Resident Regulations (Northern Ireland) 2015, Part 1,
para 9.
91 NHS Inform, ‘Healthcare for Overseas Visitors’ https://www.nhsinform.scot/care-support-and-rights/health-ri
ghts/access/healthcare-for-overseas-visitors accessed 13 November 2020.
92 ibid.
93 See McHale and Speakman (n 13).
94 D Campbell, ‘NHS Will No Longer Have to Share Immigrants’ Data with Home Office’ The Guardian (9 May
2018) https://www.theguardian.com/society/2018/may/09/government-to-stop-forcing-nhs-to-share-patients
-data-with-home-office accessed 20 October 2020. For further background on data sharing L Hiam, S Steele,
and M McKee,‘Creating a ‘Hostile Environment for Migrants’:The British Government’s Use of Health Service
Data to Restrict Immigration Is a Very Bad Idea’ (2018) Health Economics Policy and Law 107.
95 M Savage and C Cadwalladr,‘Revealed: How Home Office Hires Out Staff to Hunt Immigrants’ The Guardian
(16 February 2019) https://www.theguardian.com/uk-news/2019/feb/16/home-office-hires-out-staff-hunt
-migrants-hostile-environment accessed 20 October 2020.

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ary care, since 2017 NHS trusts in England have been required to charge non-exempt patients
upfront before providing care (except in an emergency). It is a matter of clinical judgement
whether the patient’s need is urgent.The English guidance does, however, state that

Relevant bodies must also ensure that treatment which clinicians consider to be
immediately necessary or urgent is provided to any patient, even if they have not paid
in advance. Failure to provide immediately necessary treatment may be unlawful under
the Human Rights Act 1998. Urgent treatment should also always be provided to any
person, even if deposits have not been secured. Non-urgent treatment must not be
provided unless the estimated full charge is received in advance of treatment.96

In Scotland, there is also a requirement to ascertain liability for care, and the guidance on
Healthcare for Holidaymakers from overseas states that

NHS staff will need to see some documents to make sure you can get NHS care.
• NHS staff may need to see documents that show where you live, for example your
driving licence or other documents to prove you are registered for work or health
care in your own country.
• If you don’t have the documents they ask for, NHS staff will not be able to treat you
as an NHS patient.You may need to pay for any care you receive.97

However, the guidance in Scotland is that

Where an overseas visitor is liable to charging this should be explained to them from
the outset and they should be asked to sign an undertaking that they agree to this ide-
ally before treatment commences. There will, however, be instances when this is not
feasible in the interests of the patient’s immediate health or wellbeing.98

Thus, while visitors will still be liable for charges, this does not mean that treatment itself will
be denied – simply that charging is not required upfront.

Refections on the experience in England and the devolved jurisdictions

Although the cost of overseas visitors using the NHS is a major political issue in England as we
have seen, it has not been a matter of significant controversy or debate in the devolved jurisdic-
tions (with the exception of Northern Ireland) until recently.While this may be due to a combi-
nation of fewer visitor numbers and a completely different political environment, it has allowed
the devolved jurisdictions to avoid aspects of the debate in England.This debate has contained
allegations of inequity and has focused on the relationship which can be drawn between charg-
ing of visitors and the hostile environment.99 There are some clear differences between England

96 Provision of Health Services to Persons not Ordinarily Resident Regulations (Northern Ireland) 2015 (n 29)
para 8.32.
97 https://www.nhsinform.scot/media/1124/health-care-for-holidaymakers-from-overseas-v5-2016.pdf accessed
13 November 2020.
98 Scottish Government (n 35) 3, para 6.
99 See A Shaves,‘Austerity or Xenophobia? The Causes and Costs of the “Hostile Environment” in the NHS’ (2019)
Healthcare Analysis 202.

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and the devolved jurisdictions in relation to charging overseas visitors for healthcare, with the
latter offering more generous healthcare provision. There is no statistical evidence that this
more generous approach has been exploited by ‘health tourists’ crossing over the borders from
England. However, as England’s trajectory of increasingly stringent overseas visitor charging
has continued, the devolved jurisdictions are starting to engage far more with this issue. The
English experience following the 2015 reforms, with a litany of inaccurate application of the
provisions,100 the rise of concern and disquiet amongst patients and professionals alike,101 and
the absence to date of definitive statistics illustrating that a tougher approach is empirically
evidenced, provides a very cautionary tale. Concerns have been expressed in England as to
the adverse impact of charging on the delivery of healthcare and the fact that this can deter
individuals seeking treatment.102 Any attempt to radically change the approach in the devolved
administrations needs to be necessarily seen in that context.The fact also that healthcare profes-
sionals are involved in the charging process remains a matter of controversy. In England clini-
cians have expressed grave concern regarding their involvement in determining eligibility for
free treatment and its impact on the professional–patient relationship.103 Is the approach taken
in England the inevitable trajectory for the rest of the UK longer term, or does engagement
with human rights and global health law provide a possible change in approach in the future?

Conclusion
The issue of charging overseas visitors highlights what are, perhaps, inevitable tensions in expec-
tations regarding rights concerning healthcare. While health can be seen as a universal ‘right,’
what health and healthcare means and how rights can be utilised to safeguard them are challeng-
ing questions.This is exemplified in the context of those seeking healthcare in a country where
they are ‘visitors.’ It is interesting that the sole reference to date to the question of human rights
in this context across England and the devolved jurisdiction in relation to charging of overseas
visitors appears to be that in the 2020 Department of Health Guidance in England which makes
reference to the fact that failure to provide ‘immediately necessary treatment’ may be unlawful
under the Human Rights Act 1998, but does not engage further with this issue.104 Nonetheless,
while claims of rights to healthcare help to inform the debate at the same time, they do not
always provide straightforward solutions to what are challenging socio-economic questions.
In the early years of the NHS, it was almost a badge of honour not to have to be seen to
charge overseas visitors for treatment.105 In an era of today’s cash-strapped NHS in which there
are major concerns relating to the demands on resources, then such an approach may be seen
as fundamentally idealistic and, perhaps, unrealistic.Today, when there are continual pressures to

100 S Wollaston, Letter from Dr Sarah Wollaston MP, Chair of Health Committee to Jeremy Hunt (21 July 2017); L Pasha-
Robinson, ‘Pregnant British Woman Ordered by NHS to Prove She Is from UK to Receive Free Treatment’
Independent (21 October 2017);A Gentleman,‘Londoner Denied NHS Cancer Care:‘It’s Like I’m Being Left to
Die’ The Guardian (10 March 2018).
101 A Rimmer ‘Royal Colleges Call for End to Charges for Overseas Patients’ (2018) 363 BMJ k5413.
102 A Gentleman,‘Crackdown on Migrants Forces NHS Doctors to “Act as Border Guards”’
The Guardian (20 April 2017) https://www.theguardian.com/uk-news/2017/apr/20/crackdown-migrants
-nhs-doctors-border-guards-immigration-undocumented-migrants accessed 13 November 2020.
103 See e.g. M Weaver ‘Doctors Threaten to Boycott Plan for Patients to Show ID at Hospitals’ The Guardian (22
November 2016) https://www.theguardian.com/society/2016/nov/22/doctors-threaten-to-boycott-plan-for-
patients-to-show-id-for-nhs-care accessed 13 November 2020.
104 ibid 32.
105 See McHale and Speakman (n 13).

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 Jean V McHale and Elizabeth M Speakman

find savings, the recent heightened discussion of charging across the devolved jurisdictions is,
perhaps, to be expected, but it is suggested that any major reforms should not be implemented
without very careful consideration ensuring that lessons are learnt from the problematic imple-
mentation of policy in England. Such changes must be clearly evidence-based and implemented
in a way which does not undermine the fundamental ethos of the NHS itself of care free at the
point of delivery.
To date, in the UK as a whole and, in particular, in England the charging system has been
too often driven by reports of concerns regarding cost without a wholly comprehensive engage-
ment with the relative costs of operating such a charging system against the potential costs
incurred. But the question of paying for treatment is not simply a question for those visiting the
UK, but for UK citizens travelling abroad, and this same issue is reflected across different juris-
dictions.There is an ongoing international recognition of health as a global concern through the
work of organisations such as the WHO,106 and, indeed, COVID-19 has thrown into sharp relief
how disease is no respecter of borders. If, at the international level, there is real engagement with
rights to health and healthcare as a matter of global justice and global health governance, then,
as part of this, charging visitors for treatment should be addressed.107 In a world of increasing
global travel and employment, reciprocal agreements between states to cover the cost of health-
care of their own citizens while in other member states would provide an obvious solution.108
This could be seen as a fundamental part of a drive towards an acceptance of universal health
coverage.109 That, of course, though is someway removed given the diversity and disparity of
healthcare provision currently across member states themselves. Furthermore, in developing
such a global approach, there would need to be engagement with what universal health coverage
should contain in that context and whether it should extend to cover costs of those individu-
als specifically travelling with the aim of receiving treatment rather than those who are in the
country for travel or tourism and then fall ill while present, something which goes beyond the
scope of the current chapter.110 In the absence of such an extensive global approach, it is sug-
gested that, at the domestic level, a cautious approach needs to be taken before charging patients
for services in a healthcare system which would normally be free at the point of delivery.What
should be critical in developing such a policy across jurisdictions is to ensure that it is based on
a transparent principled approach which is equitable and is proportionate. Without this, there
is always a very serious risk that health policy may be driven more by headlines and political
agendas rather than clear evidence.

Acknowledgements
The authors gratefully acknowledge the support of ESRC grant number ES/R002053/1.

106 See M Cueto,T M Brown, and E Fee, The World Health Organization: A History (CUP 2019); and LO Gostin,
Global Health Law (Harvard 2014), ch 4.
107 See, generally, Gostin (n 106), and BM Meier and LO Gostin ‘Framing Human Rights in Global Health
Governance’ in BM Meier and LO Gostin (eds), Human Rights in Global Health (OUP 2018).
108 In the context of the EU, health policy has evolved to facilitate such coverage of reciprocal healthcare for EU
citizens, see TK Hervey and JV McHale, European Health Law:Themes and Implications (CUP 2015), ch 4.
109 This it should be noted is very different than addressing the question of elective health procedures in the context
of non-therapeutic procedures, e.g. some forms of cosmetic surgery.
110 See IG Cohen, Patients with Passports (OUP 2014).

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 17
PUBLIC REPORTING,
TRANSPARENCY, AND
PATIENT AUTONOMY IN THE
PROVINCE OF QUEBEC
Lara Khoury

Introduction
Today, open communication and transparency with patients and the broader population are
thought to play a central role in guaranteeing patient safety in healthcare.1 Indeed, for many, a
culture of prevention requires open and honest disclosure of all incidents that endanger patients.2
The idea behind this is that identifying errors, recognising them, and discussing them may reveal
the systemic roots of these errors and allow for their correction in the future.3
The proposition that the disclosure of medical adverse events and transparency in the health-
care sector can improve patient safety is not new. In Canada, a 2001 report on the safety of the
healthcare system in the province of Quebec famously stated,

Reducing the incidence rate of avoidable accidents—since this must be the goal—can
only be achieved through a profound change in the culture of the entire system. Any
progress in this direction will only be possible through a new culture of transparency,
open communication and open discussion.4

1 Excellent Care for All Act, LO 2010, c 14 (Ontario), preamble.

2 Joan M Gilmour, Patient Safety, Medical Error and Tort Law:An International Comparison (Health Canada 2006) 3, 13;
Canadian Patient Safety Institute (CPSI), Disclosure Working Group, Canadian Disclosure Guidelines: Being Open
with Patients and Families (CPSI 2011) 10.
3 Gilmour (n 2) 3, 13; William Lahey, ‘Medicare and the Law: Contours of an Evolving Relationship’ in Jocelyn
Downie, Timothy Caulfield, and Colleen M Flood (eds), Canadian Health Law and Policy (4th edn, Lexis Nexis
2011) 16.
4 Quebec, Ministère de la Santé et des Services sociaux, La gestion des risques, une priorité pour le réseau: rapport du comité
ministériel (Rapport Francoeur) (MSSS 2001).

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The province of Quebec, one of Canada’s most populous provinces,5 has been at the cut-
ting edge of the movement to disclose medical mishaps. In April 2001, its Minister of Health
and Social Services (Minister of Health) mandated a special ministerial committee to inquire
into the occurrence of avoidable accidents in the healthcare sector in Quebec. The commit-
tee produced the aforementioned report (the Francoeur Report), which concluded that while
the nature, seriousness, and frequency of the occurrence of avoidable medical accidents was
no different in Quebec than elsewhere, these accidents were a significant cause of morbidity
and deserved special attention.6 The report led to the adoption of a province-wide strategy to
limit the occurrence of such mishaps, a plan which included a disclosure and reporting system.
The commission was of the opinion that it was a priority to address the culture of ‘discomfort,
embarrassment and false modesty’ that was obscuring the phenomenon of preventable medical
accidents.7
Thereafter, in 2002, Quebec became the first Canadian province to adopt groundbreaking
legislation that promotes disclosure and transparency within the healthcare system, with the
aim of improving safety. It should also be noted though that Quebec’s healthcare institutions
had already taken action in this respect even before legislative initiatives were in place. As early
as 1989, hospitals affiliated with McGill University were among the first in Canada to have a
protocol for the disclosure of medical errors.They also started keeping a ‘house’ registry.8 This
chapter therefore centres on Quebec’s leading experience with transparency in healthcare.
Disclosure of medical adverse events to institutional risk management committees and to
patients is the cornerstone of the Quebec disclosure system. However, a more recent movement
extends transparency to the public at large, grounded on the patient’s right to information as a
cornerstone of patient autonomy.9 Influenced by American developments, demands for the pub-
lic reporting of quality of care indicators – including data related to patient safety – is spreading
across Canada.
South of the Canadian border, legislative public reporting developments in the United States
were provoked by a major campaign launched in 2003 by Consumer Union, a pro-consumer
lobby associated with Consumer Reports.This campaign – likely influenced by publication of
the Institute of Medicine’s report To Err Is Human10 – called on American states to pass laws

5 Canada has ten provinces and three territories. Private law matters are governed by the common law throughout,
except in the province of Quebec where the civil law tradition is in effect.
6 Rapport Francoeur (n 4) 1.
7 ibid (my translation).
8 ‘The MUHC Becomes One of the First Canadian Health Centres to Adopt a Disclosure Policy’ (McGill University
News and Events (Channels), 19 November 2001) www.mcgill.ca/channels/news/muhc-becomes-one-first-cana
dian-health-centres-adopt-disclosure-policy-1850 accessed 25 December 2019.The MUHC accidents and inci-
dents registry dates from 1994: MUHC,‘Patient Safety Learning’ (CUSM) https://legacy.muhc.ca/royalvic/page
/patient-safety-learning accessed 8 January 2020.
9 Patrick A Molinari,‘Émergence et structuration du droit de la santé : du colloque singulier à la théorie des droits
sociaux’ in Institut de droit de la santé, Droit de la santé : Fondements et perspectives,Actes de la 10e Journée de droit de
la santé (Université de Neuchâtel 2004) 1617 (discussing patients’ access to their health records).
10 Implicit in Jan Odom-Forren and Ellen J Hahn, ‘Mandatory Reporting of Health Care-Associated Infections:
Kingdon’s Multiple Streams Approach’ (2006) 7 Policy Politics Nursing Practice 64, 66. In 1999, the American
Institute of Medicine produced its famous report To Err Is Human in which it concluded that most of the harm
suffered by patients is the result of systemic problems that can be prevented: Linda T Kohn, Janet M Corrigan,
and Molla S Donaldson (eds), To Err Is Human: Building a Safer Health System (National Academy Press 2000).This
report strengthened the patient safety movement, which emphasises systemic analysis, in particular, as a way to
reduce errors and harms in healthcare.This movement identifies a number of measures as being vital to protecting

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requiring hospitals to publicly report infection rates.11 These lobbying efforts led to the adoption
of numerous legislative texts requiring such reporting. Controversy sparked thereafter as to the
validity of the information disclosed, its effect on the quality and safety of care, and on the free
choice of patients.12
This chapter comments briefly on the issue of the public reporting of safety indicators13 from
the perspective of Quebec, the Canadian province that has shown the most legislative leadership
in disclosure initiatives. Across Canada, public healthcare system transparency is evolving,14 but
without national cohesion.15 Some provinces and territories publicly disclose quality indicators,
while others do not, and Canadian commentators describe the indicators as variable and even
‘chaotic.’16 More uniform national reporting has been occurring since 2004, however.17 Hence,
while Canada as a whole does not offer the best model in respect of transparency, the Quebec
experience offers an interesting case study of long-term efforts at building bridges with the
population through the disclosure of information related to patient safety.

Public reporting of patient safety indicators in Quebec

The patient safety movement emphasises the importance of openly disclosing medical adverse
events, particularly those that have had or could have negative consequences for the patient.18
Patients themselves desire such open communication. Indeed, according to the Canadian Patient
Safety Institute (CPSI), when harm occurs, patients want to know: what happened, what meas-
ures will be taken to reduce the harm they suffered, that the healthcare professional and the
institution are sorry for what happened, and what they will do so that the situation does not
happen again.19
Safety and transparency are thus foundational values in several healthcare systems, including
the Quebec system. Quebec’s Act Respecting Health Services and Social Services (AHSSS)
entrenches these values, affirming the importance of the safety of healthcare services in its very
first provisions20 as well as the importance of the participation of ‘individuals and groups of

patient safety, including the creation of an environment in which errors can be exposed and analysed without
fear of individual blame or responsibility.
11 Rachel L Stricof et al., ‘Lessons Learned While Implementing Mandatory Health Care-Associated Infection
Reporting in New York State’ (2013) 19(4) Journal of Public Health Management & Practice 294.
12 See Lara Khoury,‘La transparence dans le réseau de la santé’ in Vincent Gautrais, Catherine Régis and Laurence
Largenté (eds), Mélanges Molinari (Éditions Thémis 2018).
13 This chapter does not comment on the public reporting of broader healthcare system performance or healthcare
quality indicators.
14 Tom Archibald, ‘Health Law Efficiency and the Pursuit of Patient Safety’ (2017) 54(3) Alta Law Review 697,
para 3.
15 Jessica Giesbrecht, A Study of Publicly-Reported Acute-Care Quality Indicators Across Canada (School of Public
Administration, University of Victoria 2016) ii. See also Health Council of Canada, Progress Report 2012: Health
Care Renewal in Canada (HCC 2012) 18–19.
16 Giesbrecht (n 15).
17 Health Council of Canada (n 15) 19. See e.g. Canadian Institute for Health Information (CIHI) National System
for Incident Reporting,‘Access Data and Reports’ (CIHI) www.cihi.ca/en/access-data-and-reports accessed 24
December 2019.
18 See e.g. Martin A Makary and Michael Daniel, ‘Medical Error – The Third Leading Cause of Death in the US’
(2016) 353(2139) BMJ 1.
19 CPSI (n 2) 10. See also Charles Vincent et al.,‘Why Do People Sue Doctors? A Study of Patients and Relatives
Taking Legal Action’ (1994) 343(8913) Lancet 1609.
20 Act Respecting Health Services and Social Services (AHSSS), CQLR c S-4.2 (Quebec), ss 2(8.1) and 5.

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individuals in the selection of orientations and in the setting up, improvement, development
and management of services.’21 Since 2002, the AHSSS has also formally entrenched the right of
those using healthcare services to,

be informed, as soon as possible, of any accident having occurred during the provision
of services that has actual or potential consequences for the user’s state of health or
welfare and of the measures taken to correct the consequences suffered, if any, or to
prevent such an accident from recurring.22

Reporting systems for medical accidents and incidents, and for healthcare-associated infections,
complements this duty to openly communicate with patients.These reporting systems facilitate
the gathering of data which the state then shares with the public at large.

Public reporting of medical accidents and incidents

In the province of Quebec,23 public reporting pertains to three types of patient safety indicators:
accidents and incidents related to healthcare delivery, and healthcare-associated infections.The
AHSSS defines an accident as an ‘action or situation where a risk event occurs which has or
could have consequences for the state of health or welfare of the user, a personnel member, a
professional involved or a third person.’24 An incident is an action or situation that does not have
‘consequences for the state of health or welfare of a user, a personnel member, a professional
involved or a third person, but the outcome of which is unusual and could have had conse-
quences under different circumstances.’25
The AHSSS obliges every healthcare institution to create risk management committees.26
These committees are tasked with identifying and analysing the risk of incidents and accidents
in order to ensure patient safety.27 In carrying out this mission, the institution must create a local
register of incidents and accidents. The purpose of the local register is so that the committee
may analyse the potential causes of incidents and accidents ‘and recommend to the board of
directors of the institution measures to prevent such incidents and accidents from recurring and
any appropriate control measures.’28 Every healthcare institution’s employees as well as any other

21 ibid s 2(1).
22 ibid s 8.
23 For other Canadian examples, see CIHI (Your Health System) yourhealthsystem.cihi.ca/hsp accessed 24 December
2019; Ontario, ‘Hospital Patient Safety’ (Health Quality Ontario) www.hqontario.ca/System-Performance/Hosp
ital-Patient-Safety accessed 24 December 2019; Nova Scotia, ‘Public Reporting on Patient Safety’ (Nova Scotia)
novascotia.ca/dhw/hsq/public-reporting/ accessed 24 December 2019. Other public disclosure sites offer more
technical information that is probably addressed at actors of the healthcare system rather than the public, see e.g.
CIHI’s National System for Incident Reporting,‘Access Data and Reports’ (n 17); Canadian Medication Incident
Reporting and Prevention System, ‘What Is CMIRPS?’ (CMIRPS) www.cmirps-scdpim.ca/?p=14 accessed 24
December 2019.
24 AHSSS (n 20) s 8.
25 ibid s 183.2.
26 ibid s 183.1.
27 ibid s 183.2. The risk management committee’s reports are provided to the institution’s ‘watchdog committee’
(ibid s 181.0.1), a subcommittee of the board of directors: Quebec, Ministère de la Santé et des Services sociaux
(MSSS), Rapport 2018–2019 sur les incidents et accidents survenus lors de la prestation de soins de santé et de services
sociaux au Québec (MSSS 2019) 20.
28 AHSSS (n 20) s 183.2. Other Canadian provinces have also instituted internal disclosure systems, e.g. in Ontario:
Hospital Management, RRO 1990, Regl 965, s 2(4) (Public Hospitals Act, RSO 1990, c P-40); in Manitoba:

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persons providing services to users on behalf of an institution must report incidents and acci-
dents.29 Healthcare institutions must also provide the information collected in the local register
to the Ministry of Health.30 The Minister of Health must then establish and maintain a national
register of incidents and accidents based on the content of the local registers. Similar to the
local register, the national register’s the purpose is to allow the appropriate bodies to monitor
and analyse the causes of incidents and accidents, and to ensure their prevention through the
implementation of control measures.31
Once per year, the Ministry of Health publicly discloses the information gathered in the
national register through its website,32 stressing that it does so in order to be transparent with the
population.33 Prior to the summer of 2014, the ministry actually reported its data publicly every
six months; the publication is now annual to ensure that the data and analysis are ‘more complete
and conclusive,’ since it gives institutions more time to report to the ministry and allows the
ministry to analyse, rather than simply communicate, the data.34 In my opinion, the presentation
of the information makes it fairly accessible.The reports include data tables, with the most com-
plex being located in the annexes. In the main text, the information is analysed in an intelligible
manner. The reports offer clear definitions of key concepts, as well as context and interpreta-
tion of the data to allow a clearer understanding of the statistics. For instance, the Ministry of
Health provides the yearly numbers of surgeries, ER visits, medical consultations in healthcare
institutions, and days of housing in long-term care homes alongside the number and types of
medical accidents and incidents.35 The report also notes areas that are improving as well as those
worsening.36 A final example of the contextualisation provided as part of the report is the fact
that it clearly explains why some regions of the province have worse results than others (e.g.
high concentration of healthcare institutions, providing specialised and super-specialised care).37

Public reporting of healthcare-associated infections

Another set of data disclosed publicly by the state in Quebec concerns healthcare-associated
infections (HAIs). Originally, the need to publicly disclose rates of HAIs was not agreed on
unanimously by actors of the healthcare system in Canada. In 2006, the Association of Medical
Microbiology and Infectious Disease Canada (AMMI) and the Community and Hospital

Regional Health Authorities Act, SM 2005, c 24, ss 53.1–53.4; in Saskatchewan:The Regional Health Services
Act, SS 2002, c R-8.2, s 58(2); in New Brunswick: Health Quality and Patient Safety Act, RSNB 2016, c 2, ss
2(2)–2(3), 3(1)(2), 3(1)(4).These systems may also impose a duty to disclose to patients (e.g. Hospital Management,
RRO 1990, Regl 965, s.2(4); Manitoba Regional Health Authorities Act, SM 2005, c 24, s 53.2(2)(a); Health
Quality and Patient Safety Act, RSNB 2016, c 2, ss 3(1) and 4).
29 AHSSS (n 20) s 233.1.
30 ibid.
31 ibid s 431.
32 Quebec, Ministère de la Santé et services sociaux (MSSS), ‘Publications du ministère de la Santé et services
sociaux’ (MSSS) publications.msss.gouv.qc.ca/msss/recherche/?txt=Registre+national+des+incidents+et+a
ccidents&rechercher=Lancer+la+recherche&msss_valpub= accessed 25 December 2019. Canadian provinces
also report hospital data to the Canadian Institute for Health Information (CIHI) which makes aggregate data
available publicly on its website: CIHI,‘Access Data and Reports’ (n 17).
33 Quebec, Rapport 2018–2019 (n 27) 3, 37.
34 Quebec, Ministère de la Santé et des Services sociaux (MSSS), Rapport 2014–2015 des incidents et accidents survenus
lors de la prestation des soins et services de santé au Québec (MSSS 2015) 7.
35 Quebec, Rapport 2018–2019 (n 27) 3.
36 E.g. ibid 4.
37 ibid 15.

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Infection Control Association of Canada (CHICA) produced a joint position paper arguing
against the use of infection rates reported by individual hospitals as a means of classifying them.38
However, around the same time, others were decrying the weakness of Canadian disclosure
obligations.39
Data concerning HAIs is collected through a surveillance system called the Programme
provincial de prévention et contrôle des infections (PCI) (provincial program for infection
prevention and control). It obliges healthcare institutions to declare the incidence of seven
different kinds of infection to the Quebec National Public Health Institute (Institut national
de santé publique du Québec or INSPQ). These are hospital-wide nosocomial bacteraemia,
central-line-associated nosocomial bacteraemia in intensive care units, bacteraemia associated
with haemodialysis vascular access, methicillin-resistant staphylococcus aureus bacterial infections,
Clostridium difficile diarrhoea, carbapenemases producing gram-negative bacillus infections, and
vancomycin-resistant enterococcus infections.
Institutions collect the data locally through their infection prevention and control teams
(équipes en PCI). Nationally, the data is gathered via the information system for the surveillance
of nosocomial infections (Système d’information pour la surveillance des infections nosoco-
miales or SI-SPIN). The SI-SPIN data is not directly accessible to the public. However, the
Quebec Nosocomial Infection Committee (Comité sur les infections nosocomiales du Québec
or CINQ), a subcommittee of the INSPQ, produces, analyses, and disseminates annually to the
public the results of each monitoring program.The CINQ publicly releases an annual general
report on its website, with information tailored to the general public.40 It also publishes special
reports for each of the seven monitored infections.
The general report is relatively simple to understand. For each type of infection, it provides
simple statistical data accompanied by an analysis.The report then offers national and interna-
tional comparisons, and straightforward recommendations based directly on the data collected
for each of the seven HAIs monitored.41 The special reports (‘surveillance results’) are much
more detailed in terms of statistical data and, therefore, much more difficult for the neophyte
to read and understand.They detail incidence rates and their evolution, and describe individual
cases. They also contain a microbiology section and include detailed data for each healthcare
establishment.42

Promotion of patient autonomy through public reporting

The public reporting of patient safety indicators is thought of as, first and foremost, a measure
to promote patient safety. Commentators believe that promoting a culture of prevention in
healthcare requires the open and honest disclosure of patient safety adverse events, accompanied

38 Association of Medical Microbiology and Infectious Disease Canada (AMMI–CHICA), Public Reporting and Inter-
Hospital Comparison of Healthcare-Acquired Infections, Position paper (IPAC Canada 2006) ipac-canada.org/photos/
custom/OldSite//pdf/AMMIposition.pdf accessed 7 January 2019.
39 Canadian Union of Public Employees (CUPE), Healthcare Associated Infections: A Backgrounder (CUPE 2009) 15,
cupe.ca/sites/cupe/files/healthcare-associated-infections-cupe-backgrounder.pdf accessed 25 December 2019.
40 Quebec, INSPQ, Surveillance provincial des infections nosocomiales: faits saillants, discussions et recommandations 2017–
2018 (INSPQ 2019).
41 E.g. the latest general report: ibid.
42 E.g. the latest surveillance results for clostridium difficile infections: Quebec, INSPQ, Diarrhées associées au Clostridium
difficile: résultats de surveillance 2018–2019 (INSPQ 2019) www.inspq.qc.ca/infections-nosocomiales/spin/dacd/
surveillance-2018-2019 accessed 29 December 2019.

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by efforts to learn useful lessons from past mistakes.43 However, the literature notes the paucity
of evidence supporting the effectiveness of public error reporting systems for improving patient
safety,44 although some studies have established an association between the two.45 Others observe
adverse effects on health outcomes (e.g. gaming), but describe them as minimal.46
Some believe that, beyond safety, the public reporting of patient safety indicators is neces-
sary to promote patients’ autonomy and free choice in determining their preferred healthcare
institution.47 These types of arguments have been mainly advanced, and analysed, in the United
States where the healthcare system is built on a ‘consumerist model.’48 Indeed, one may argue
that patients have a ‘right to know’ about quality indicators49 and that patient autonomy is the
source of obligations of transparency toward the public. For example, American authors argue
that the ability to compare infection rates at each healthcare institution allows the patient to
make an informed choice50 before ‘purchasing’ healthcare, such as a consumer would do when
purchasing a product that carries inherent risks. American authors also maintain that health-
care purchasers want to obtain information on the performance of establishments in order to
become better purchasers of health services over time.51
Of course, in the United States, where private industry largely dominates the healthcare sys-
tem, consumer choice is a major issue. Patient choice takes on a different meaning, however, in
systems like the Canadian one where healthcare is publicly financed52 and the patient has limited
choice as to where to receive the services. Moreover, there are even American commentators
who critique arguments based on patients’ autonomy.53 From a Canadian perspective, such criti-
cism may rest on four grounds: problems with the quality of the data, the possible unintelligibil-

43 Gilmour (n 2) 3, 13; CPSI (n 2) 10.

44 In the context of HAIs: AMMI–CHICA (n 38); Thomas Haustein et al., ‘Use of Benchmarking and Public
Reporting for Infection Control in Four High-Income Countries’ (2011) 11 Lancet Infectious Diseases 471, 475.
Generally, regarding quality indicators: Anne C Wojtak, ‘How Can We Evaluate and Enhance the Impact of
Third-Party Public Reporting on Quality Improvement for Health Care in the Province of Ontario, Canada?’
(D.P.H. thesis, University of North Carolina at Chapel Hill, 2016) iv; R Hamblin et al., ‘Public Reporting of
Health Care Performance Data: What We Know and What We Should Know’ (2016) 129(1431) New Zealand
Medical Journal 7, 11, and studies cited.
45 E.g. in Canada: Nick Daneman et al.,‘Reduction in Clostridium Difficile Infection Rates after Mandatory Hospital
Public Reporting: Findings from a Longitudinal Cohort Study in Canada’ (2012) 9(7) PLoS Medicine. Also
Wojtak (n 44) 7, 21–22, 24–25, and studies cited, including Damien Contandriopoulos et al., ‘The Multiple
Causal Pathways between Performance Measures’ Use and Effect’ (2014) 71(1) Medical Care Research & Review
3; Giesbrecht (n 15) (studies cited).
46 Wojtak (n 44) 25–26 and studies cited. On balance, it appears to have more benefits than harm especially with
regard to institutional behaviour, however: ibid, 29.
47 Zackary D Berger et al.,‘Can Public Reporting Impact Patient Outcomes and Disparities? A Systematic Review’
(2013) 93 Patient Education & Counselling 480; Marjan Faber et al.,‘Public Reporting in Health Care: How Do
Consumers Use Quality-of-Care Information? A Systematic Review’ (2008) 47(1) Medical Care 1.
48 Berger et al. (n 47) 481.
49 E.g. sources cited by Odom-Forren and Hahn (n 10) 68.
50 Julie Reagan and Carl Hacker, ‘Laws Pertaining to Healthcare-Associated Infections: A Review of 3 Legal
Requirements’ (2012) 33(1) Infection Control & Hospital Epidemiology 75, 79.
51 Edward S Wong et al., ‘Public Disclosure of Healthcare-Associated Infections: The Role of the Society for
Healthcare Epidemiology of America’ (2005) 26(2) Infection Control & Hospital Epidemiology 210, 210.
52 It is funded publicly at the level of 70% and made accessible to patients without financial barriers.
53 E.g. the ability to choose patients is limited by insurers or managed care organizations, physician’s admission priv-
ileges, and their location in sectors where competition between hospitals is limited: Jill A Marsteller,Yea-Jen Hsu,
and Kristina Weeks,‘Evaluation the Impact of Mandatory Public Reporting on Participation and Performance in
a Program to Reduce Central Line-Associated Bloodstream Infections: Evidence from a National Patient Safety
Collaborative’ (2014) 42 American Journal of Infection Control S209, S213; Michael B Edmond and Gonzalo

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ity of the information, the absence of evidence that public reporting has an effect on patient
decision-making, and the doubtful usefulness of public reporting within the informed consent
process.

Data quality
The first concern relates to problems with the quality of the data collected and shared by the
state that may limit its potential for reliably transmitting information to the public in a way that
can truly promote patient autonomy. For patients to trust the data, for it to be useful to them,
and for it not to mislead them, the data communicated must be of high quality. (Note that this
quality is also necessary for systems to use the data to promote safety.) Systems for collecting and
sharing data obviously need to continuously improve in this respect. A rich and very prolific
literature raises problems with how data is collected and analysed in Quebec as elsewhere. In
Quebec, interestingly, the Ministry of Health itself reflects on the issue of the quality of its data
in the context of the reporting of medical accidents and incidents through its national register,
on which we draw for the purposes of our analysis.
When asked by the media to explain an increase in the number of deaths alongside a decrease
in the number of accidents and incidents, as shown in the 2014–2015 Report of the National
Registry, a spokesperson was unable to provide an explanation.To justify the absence of expla-
nation, she invoked failures of the reporting system, including, according to her, institutions’
failure to communicate their data to the registry, difficulties in analysing and comparing the data,
underreporting, and technical difficulties in entering data into the system.54 In its three most
recent public reports, the Quebec Ministry of Health notes a similar array of problems. These
include disparities in the way institutions collect data55 and the communication of incomplete
declarations which the ministry must therefore exclude from the national data reporting.56 A
recurring problem is the fact that institutions tend to report data promptly after the adverse
event has occurred.They thus do so before they can complete a full analysis of the event, of its
severity, and of its causes,57 leading to incomplete declarations of incidents and accidents. The
ministry also observes difficulties with the continuous feeding of the national register before
the ministry’s deadline and the fact that some institutions use a ‘house’ register in contravention
of the law.58 The ministry also advises against using the reported data to compare institutions,
since each institution has a distinct mission and serves the needs of different territories and
clienteles.59 In an older document from 2014, the Ministry of Health notes an additional series
of issues.These include underreporting (poor compliance with disclosure obligations); the fact
that the data collected reveals variation in the analysis tools used; and in the number, expertise,

ML Bearman, ‘Mandatory Public Reporting in the USA: An Example to Follow?’ (2007) 65(S2) Journal of
Hospital Infection 182, 183.
54 Cited in Tommy Chouinard, ‘Incidents dans le réseau de la santé: 316 morts en un an’ La Presse (Montreal, 8
January 2016), reporting on the 2014–2015 report of the Régistre national des incidents et des accidents.
55 Quebec, Ministère de la Santé et des Services sociaux (MSSS), Rapport 2016–2017 sur les incidents et accidents
survenus lors de la prestation de soins de santé et de services sociaux au Québec (MSSS 2017) 35.
56 Quebec, Ministère de la Santé et des Services sociaux (MSSS), Rapport 2017–2018 sur les incidents et accidents sur-
venus lors de la prestation de soins de santé et de services sociaux au Québec (MSSS 2018) 4 (11 out of 137 institutions);
Quebec, Rapport 2018–2019 (n 27) 4 (4 out of 139 institutions).
57 Quebec, Rapport 2016–2017 (n 55) 3, 4. Quebec, Rapport 2018–2019 (n 27) 4.
58 Quebec, Rapport 2016–2017 (n 55) 4.
59 Quebec, Rapport 2016–2017 (n 55) 3, 4; Quebec, Rapport 2018–2019 (n 27) 4.

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and authority of risk managers.60 It also observes that events having no adverse consequences
for the patient (incidents) are rarely analysed.61 Authors have also observed that variations from
year to year in the number of accidents and incidents cannot be reasonably relied upon; they are
more closely related to how institutions respond to the disclosure process than to real increases
or decreases in rates of occurrence.62
Finally, initiatives to improve data quality are stressed in the latest 2018–2019 report.63 A full,
albeit brief, section is devoted to the subject64 and announces measures to improve data quality
in the future.65 Despite acknowledging problems and taking action to improve the quality of
the data it reports, the Ministry of Health notes that surveillance is a local responsibility66 and
ascribes most of the lacuna observed in its report to local institutions’ failings.
In its annual reporting of HAI rates, the CINQ does not undertake a similar reflection on the
quality of its data. Reporting tends, at least as far as the general report is concerned, to remain
at a very general level. However, the international literature raises many problems concerning
the quality of publicly disclosed data concerning HAIs and the methodology for gathering such
data.67 Therefore, data quality issues likely exist with regard to Quebec HAI reporting as well.
This may militate in favour of the CINQ engaging in open self-reflection with a view to not
only improve outcomes related to HAIs prevalence, but also its own surveillance system. Given
the absence of such publicly available analysis, we look briefly at some of the issues the North
American literature raises in this respect.
The American and Canadian literature raise numerous methodological and data quality issues
with regard to the public reporting of HAI rates, probably fuelled particularly by the extensive
experience with it in the United States. Commentators worry about flaws in the data com-
municated to the public, and its potential to be misleading, misinterpreted, or misunderstood.68
Authors emphasise the need to standardise and risk adjust the data for differences in population
or range and type of medical procedure,69 risk of infection inherent to the patient, and com-
plexity of care offered at each hospital. Authors also raise the need for uniform definitions and

60 The Canadian literature observes also a need for more consistent methods of public performance reporting:
Giesbrecht (n 15) 21, citing J Veillard, B Tipper, and S Allin, ‘Health System Performance Reporting in Canada:
Bridging Theory and Practice at Pan-Canadian Level’ (2015) 58(1) Canadian Public Administration 15.
61 Quebec, Ministère de la Santé et des Services sociaux (MSSS), Améliorer la prévention des chutes et incidents et acci-
dents liés à la médication: de la stratégie à l’action.Volet: incidents et accidents liés à la médication (MSSS 2014) 35.
62 Jean-François Bussières and Denis Lebel, ‘Des soins sans incidents ni accidents!’ (2011) 58(5) Québec Pharmacie
39, 41.
63 Quebec, Rapport 2018–2019 (n 27) 11.
64 ibid 35.
65 In this latest report, the ministry announces a revamping of its guidelines to address differences in the ‘disclosure
culture’ and in the interpretation of guidelines, which may explain regional variations in the data: ibid 22 and 35.
66 Quebec, Rapport 2018–2019 (n 27) 36.
67 E.g. Haustein et al. (n 44) 471. See also Centers for Disease Control and Prevention (CDC) and National
Nosocomial Infections Surveillance System, ‘Nosocomial Infection Rates for Inter Hospital Comparison:
Limitations and Possible Solutions’ (1991) 12(10) Infection Control & Hospital Epidemiology 609, 610; CMAJ,
‘Public Reports of Infection Rates Urged’ (2009) 181(9) Canadian Medical Association J 573, 574; Brett G
Mitchell et al., ‘Healthcare-Associated Infections: Getting the Balance Right in Safety and Quality v. Public
Reporting’ (2012) 36 Australian Health Review 365, 366; Odom-Forren and Hahn (n 10) 67; Stricof et al. (n
11) 294;Wong et al. (n 51) 210.
68 Wong et al. (n 51) 210; Haustein et al. (n 44) 475.
69 Haustein et al. (n 44) 471. See also more generally Mark W Friedberg and Cheryl L Damberg, ‘A Five-Point
Checklist to Help Performance Reports Incentivize Improvement and Effectively Guide Patients’ (2012) 31(3)
Health Affairs 612.

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surveillance methods.70 Other objections to public reporting include cost, variations in surveil-
lance practices among reporting hospitals, underreporting, and issues with the comparability of
data from each reporting hospital.71
The quality of the data publicly communicated to the population is crucial to the promo-
tion of patient autonomy in making healthcare choices, to the extent that these choices exist,
of course.Where issues in data quality or methodology create the risk of misleading the public,
creating confusion, or resulting in misinterpretation or lack of understanding,72 one could argue
that public reporting is a disservice to patient’s autonomy.This should not lead to rejecting pub-
lic disclosure in our opinion, but rather to striving to address data quality issues and to improve
the reporting system alongside the healthcare system (quality of the first perhaps assisting in
improving the quality of the second).

Accessibility and literacy

Beyond data quality, the way the information is presented can also have an effect on patients’
ability to act on the information. Providing data to the public is insufficient if not accompanied
by an interpretation that allows it to be understood. Long-term investments in education as a
means to develop sufficient health literacy in the population may also be necessary to promote
a clear understanding of this information by patients.73 Canadian calls in favour of educating the
users of healthcare indicator information ‘to ensure meaningful and accurate use’ are therefore
warranted.74 This is especially so in light of American studies that have shown poor healthcare
choices increase with the number of options available and the complexity of the information
(e.g. the number of performance metrics).75 This means that providing more information may
lead to the conundrum of communicating data that is at once more accurate, but less intelligible
or less impactful.
Even more concerning is the fact that publicly disclosed data may exacerbate inequalities
given that those with lesser health literacy are likely to be those the system already disadvantag-
es.76 Indeed, it has been shown that patients have a poor understanding of quality of care indica-
tors, and that this is particularly the case for socially and economically disadvantaged patients.77
Our own exploration of Canadian websites through which the public reporting of safety data
takes place convinces us that a certain level of health literacy and knowledge of statistical sci-
ence is often necessary to fully understand the information.While the state displays a real effort
in Quebec to make the information intelligible to the public, the data provided is sometimes
opaque and complex. For instance, the specific reports of the CINQ transmit information that
is difficult to absorb and makes one wonder whether the CINQ might intend this information
for the healthcare community rather than for the general public. In contrast, the CINQ’s general

70 ibid 471.
71 Stricof et al. (n 11) 294;Wong et al. (n 51) 210.
72 Raised in the US and the UK:Wong et al. (n 51) 210; Haustein et al. (n 44) 475.
73 See more generally Giesbrecht (n 15) 23, referring to K Morris and J Zelmer,‘Public Reporting of Performance
Measures in Health Care’ (2005) 4 Canadian Policy Research Networks, 11–12 and R Hader,‘Public Reporting’
(2006) 37(4) Nursing Management 88.
74 Giesbrecht (n 15) iv.
75 Mark Schlesinger et al.,‘Complexity, Public Reporting and Choice of Doctors: A Look Inside the Blackest Box
of Consumer Behavior’ (2014) 71(5) Medical Care Research & Review Suppl to 2014 38, 41–43.
76 Hamblin et al. (n 44) 10.
77 Edmond and Bearman (n 53) 183; Hamblin et al. (n 44) 10.

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reports display efforts at communicating in a straightforward and unambiguous manner, and to

provide not only data but also a clear analysis of it.

Effect on decision-making processes

Citizens desire information and want to be involved in quality of care conversations. However,
empirical studies – mostly from the United States – show that the public reporting of health
safety data has little effect on decision-making processes.78 Citizens make limited or no use of
quality of care information,79 are often unaware of its availability,80 and do not understand it.81
Their motivations when making healthcare-related choices are also simply difficult to identify.82
Moreover, American authors observe that the prevalent US consumerist model itself has flaws:
‘[w]hile information might lead to greater knowledge in some groups, other less advantaged
groups might not be able to take advantage of the information as quickly or reliably for their
benefit.’83
Referring to American research, Edmond and Bearman report that only 19% of patients
used quality information to make healthcare decisions.84 When asked what sources of infor-
mation about quality of care they were most likely to use, 65% of the participants answered
family, friends, or work colleagues, doctors or nurses; and 37% said they would consult a web-
site, 20% a leaflet, 18% a state administrative entity, and 16% a newspaper or magazine. When
asked if they would prefer a hospital they were familiar with or a hospital with a better quality
score, 61% favoured familiarity.85 The authors note, however, that these results could change as
patients become better informed and better educated on these issues. Most studies demonstrat-
ing the limited role quality reports play in health-related decision-making were conducted in
the United States, however.

Importance in obtaining informed consent

A last issue pertains to whether patient safety data needs to become part of seeking an individual
patient’s informed consent before treatment. In Canada, healthcare professionals must disclose,
among other things, the ‘material risks’ of the treatment proposed. Materiality is a function of
the probability of the risk arising and the severity of its consequences.86 The evaluation of mate-
riality is closely dependent on the nature of the treatment itself and of the individual patient’s

78 Wojtak (n 44) 22, 38, and studies cited (healthcare system performance indicators in general). Berger et al. (n 47)
482, 485 report mixed results (they also note the evidence is of low quality in general). Faber et al. (n 47) 6 report
limited evidence of the effectiveness of quality information on consumer choice.
79 C Shuker et al.,‘Progress in Public Reporting in New Zealand since the Ombudsman’s Ruling, and an Invitation’
(2017) 130(1457) New Zealand Medical Journal 11, 16 (citing American studies); Hamblin et al. (n 44) 10; Faber
et al. (n 47) 1 and 2ff (and studies cited and analysed).
80 Faber et al. (n 47) 7.
81 ibid.
82 Hamblin et al. (n 44) 10. Moreover, Faber et al. observe that “[a]ge, gender, health status, education level, and
income of the consumer/patient are assumed to be important factors influencing the effectiveness of public
reporting” (Faber et al. (n 47) 6).
83 Berger et al. (n 47) 481.
84 Edmond and Bearman (n 53) 183. See also studies noted by Wojtak (n 44) 4.
85 ibid 183.
86 Hopp v Lepp [1980] 2 SCR 192, 210 and Reibl v Hughes [1980] 2 SCR 880, 884 (common law); Drolet v Parenteau
[1991] RJQ 2956 (Que CA) (Quebec civil law).

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situation. One question is, therefore, whether promoting patient autonomy and making it the
centre of healthcare decision-making would require doctors to disclose to the patient any sys-
temic risks that may affect the quality of the care proposed.These systemic risks could be identi-
fied according to safety data associated with, for instance, the particular physician undertaking
the medical treatment, extending to relevant safety data concerning the institution as a whole.
However, the quality issues from which this data may suffer and difficulties in understand-
ing it entail a very real risk of misleading the patient87 and of promoting confusion instead of
autonomy.This militates against disclosing such information in the context of seeking informed
consent.

Conclusion
From the perspective of patients’ rights, transparency may be seen as leading to more autonomy
for the patient, a reduction in the patient’s vulnerability, and the availability of a more active
role for the patient in healthcare improvement. Predominantly, however, the target of publicly
reporting healthcare safety indicators has been improving safety as well as the quality of health-
care delivery, not patient autonomy. While informed free choice, open disclosure of risks and
accidents, and communication aimed at improving quality of care are undoubtedly positive
developments for patients, autonomy is, in my opinion, a doubtful foundation for arguing in
favour of the public reporting of patient safety data.
The doubts expressed flow mostly from problems regarding the quality of the data that is
publicly communicated, as well as its intelligibility.The promotion of autonomy through public
reporting needs to be accompanied by analysis of the data as well as reflection on the quality
and trustworthiness of the reporting system itself – which Quebec seems to engage with as far
as the disclosure of accidents and incidents is concerned – and by subsequent efforts at improv-
ing the quality of the data and its accessibility.While improvement of the quality and efficiency
of the Quebec HAI reporting system is not discussed by the relevant public bodies, the North
American literature shows that efforts at maintaining quality data in this area are warranted as
with regard to incidents and accidents.This may, in turn, require long-term efforts at improving
the population’s health literacy so that its members may be true partners of the healthcare system
and fully involved in decisions about their own health, as well as decisions about ways in which
the system may promote their safety.
Overall, it is doubtful whether public reporting of patient safety indicators improves the
autonomy of patients and their ability to make informed choices. In addition to the question
of whether the patient has a real freedom of choice in publicly funded healthcare systems,
informed or not, we have raised the variableof intelligibility of available information for the
average patient.As a counter-example, the annual reports of the Quebec Ministry of Health and
the main annual report of the CINQ do appear to non-expert eyes to be the result of a true
effort at intelligibility and accuracy despite the failings that have been noted in the accident-
and incident-reporting system. But even the most intelligible data, of the best quality, may not
participate in promoting autonomous choices on the part of patients if the latter do not rely on
it, as the American literature seems to suggest is the case.
It therefore seems that, at this moment, the main attraction of the public reporting of safety
indicators is to allow healthcare establishments to change their priorities and to take measures

87 Hamblin et al. (n 44) 10.

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to improve quality of care – which, in itself, is very positive – rather than to strengthen patient
autonomy.

Acknowledgements
This research was funded by the Fondation du Barreau du Québec and the Fonds de recherche
du Québec, Société et Culture.The author wishes to thank Rebecca Schur, JD/BCL candidate
(McGill University) for the assistance provided in the preparation of this text.

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End of life
 18
HUMAN TISSUE, HUMAN
RIGHTS, AND HUMANITY
Jesse Wall

I doubt that there is a human right to have posthumous control over your own body. I also
doubt that there is a human right to determine how the body of a deceased loved one is treated,
and I doubt that there is a human right to benefit therapeutically from the use of the bodily
material of a deceased person. What I do not doubt is that – inevitably – someone will claim
that one of these human rights arises under the Universal Declaration of Human Rights (or
some domestic variant thereof). Rather than explaining my scepticism, in this chapter I explore
two more global concerns with human rights in this context. First, I explore why it is always
possible to formulate human rights-based claims. I explain how such claims are plausible because
of the ‘malleability’ of human rights reasoning. Second, I suggest that human rights-based claims
mischaracterise our relationship to our own bodily material and the bodily material of others.
Such claims structure our thinking about the use and control of bodily material in a way that
promotes individualism and self-reliance at the expense of interdependence and social solidarity.
I conclude that no one has a human right to posthumous bodily material insofar as no one per-
son occupies the normative position to pursue his or her own interests without consideration of
the interests of others.The implication is that it is preferable that we avoid discussion of global
health rights in bodily material.

Human tissue
Before we consider our ethereal human rights, let us start with our tangible human bodies. As
embodied beings, upon death we leave behind bodily material: cells, tissue, gametes, marrow,
blood, organs, cadavers, and so on.All of this bodily material can be extracted and put to thera-
peutic, scientific, and educational use. This posthumous use of bodily material, at face value at
least, engages three distinct sets of people: the progenitor (the person from whom the bodily
material originates), the family of the progenitor, and the beneficiary of the potential use of the
bodily material.
Most jurisdictions give primacy to the progenitor’s interest in determining what happens
to his or her body after the progenitor’s death, either as an express requirement of consent, or
presuming consent unless otherwise indicated.Whether this is an interest that deserves respect is
contested. For some, the very ‘notion of interests surviving death is incoherent’ on the basis that

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‘there is no one who can be harmed at the point that any wrongful setback of interests occurs.’1
If ‘respect for persons has two distinct dimensions: 1. respect for autonomy; and 2. concern for
welfare,’2 then these bases of respect are not applicable to deceased persons.As Harris explains:3

autonomy involves the capacity to makes choices, it involves acts of the will, and the
dead have no capacities—they have no will, no preferences, wants nor desires, the dead
cannot be autonomous and so cannot have their autonomy violated.

For others, ‘when we commit to respecting the interests of the living we are also committing
to respecting the dead.’4 We may have reasons to respect the wishes of the progenitor since ‘[t]
he concerns we may have with what is done with our bodies after death should not simply be
dismissed as irrational.’5 And even if they are irrational, McGuiness and Brazier argue:‘to demand
rationality in death is to some extent to misunderstand the nature of the processes involved.’6
There is disagreement, therefore, as to whether there is a duty to respect the wishes of the
deceased with regard to his or her body.
Legal schemes can differ in terms of the extent to which the family of the deceased can
determine whether the body of the deceased is used for therapeutic, scientific, or educational
purposes. It is also contestable whether this familial interest ought to be assigned any normative
weight. On one view, since we are embodied beings, our relationships with other people are
mediated through our bodies. Upon death, our posthumous body remains as the medium of our
relationships.7 Hence, in very visceral and yet commonplace scenarios:8

the dead infant, the wife succumbing to breast cancer at 35, the elderly father dying
suddenly of a heart attack, do not change their nature for their mother, husband or
daughter.They remain Susannah, Lucy and Dad.

Those closest to us – such as our partner, children, parents, siblings, long-standing friends –
therefore have an interest in determining what happens to our posthumous bodies.The control
over the bodily material represents an extension of the embodied relationship with the deceased
person.
According to a competing view, ‘[t]he consent of parents, other relatives or friends to post-
mortem retention and use of tissue and organs’ represents a non-person-affecting interest.9 It
then follows that the10

1 E Partridge, ‘Posthumous Interests and Posthumous Respect’ (1981) 91 Ethics 243; see also D Price, ‘Property,
Harm and the Corpse’ in B Brooks-Gordon (ed) Death Rites and Rights (Hart 2007) 199–217.
2 J Harris,‘Law and Regulation of Retained Organs: the Ethical Issues’ (2002) 22 Legal Studies 527, 530.
3 ibid 531.
4 M Brazier and S McGuiness, ‘Respecting the Living Means Respecting the Dead Too’ (2008) 28(2) Oxford
Journal of Legal Studies 297, 316.
5 ibid.
6 ibid.
7 J Wall, Being and Owning (Oxford University Press 2015) 64; T Carman, Merleau-Ponty (The Routledge
Philosophers, Routledge, 2008) 141.
8 JC Callahan, ‘On Harming the Dead’ (1987) 97 Ethics 341–352; M Brazier and S McGuiness, ‘Respecting the
Living Means Respecting the Dead Too’ (2008) Oxford Journal of Legal Studies 297, 305.
9 Harris (n 2) 546.
10 ibid.

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 Human tissue, human rights, and humanity

consent of parents or other relatives to organ retention or use is not required where
more important person-affecting interests of others conflict… if consent is sought and
acted upon, this is more like extending a courtesy than respecting a right.

Similar to disagreement as to our respect for the posthumous person, the relative strength of the
familial interest in bodily material is contestable. It may be a ‘relatively weak’ and non-‘person-
affecting’ interest, or it may be an indispensable aspect of the way we relate to one another.
The third set of interests are the interests of the beneficiaries of the posthumous use of bod-
ily material.With regard to organ donation, it is the organ recipient’s chance at a prolonged life.
For assisted reproduction, it might be the recipient’s chance at biological or gestational parent-
hood. In other contexts, the therapeutic interest may be more diffused.We may all benefit, for
instance, from the medical advances enabled by scientific research on bodily material. As with
the posthumous and relational interest, the normative weight of this societal interest is contested.
For some, the posthumous use of bodily material is ‘morally obligatory’ on the basis that any
‘individualistic considerations’ ought to ‘give way to utility in the interests of social and political
morality.’11 In accordance with the ‘principle of sufficiency,’12 Fabre argues that13

if the materially needy have a right against the well-off that the latter transfer some of
their income to them, then the medically needy have a right against the healthy that
the latter transfer some of their body parts to them.

It therefore follows that ‘the needs of the sick should, in principle at least, be met by the con-
fiscation of organs from the dead and even from the living.’14 For others, it is praiseworthy but
not obligatory. By itself, the mere ability to benefit another – through the provision of bodily
material (or any other ‘surplus resource’) – may only create a gift relationship. Not a relationship
of obligation. Hence, there is disagreement as to how to calibrate the normative weight of the
broader therapeutic interest in the posthumous use of bodily material.
The point to which I am trying to triangulate is that any view on the posthumous use of
bodily material must calibrate the relative strength of these three sets of interests. Moreover, any
legislative scheme that governs the use and control of bodily material is necessarily premised
upon a particular calibration of these interests.The global trend is to give primacy to the pro-
genitors’ wishes, where expressed.An increasing number of jurisdictions are presuming consent
to procedures, such as organ donation, in the absence of the progenitors’ expressed objec-
tion.The motivation behind the presumed consent is the therapeutic benefit of the availability
of transplantable organs. Whether or not consent on behalf of the progenitor is presumed or
required, secondary consideration is often given to the views of the immediate family. Both the
requirement of familial consent in the absence of express progenitor consent or the power of the
family to rebut the presumption in favour of consent are at the expense of the greater availability
of human tissue for therapeutic, scientific, and educational use. In contrast, a scheme of conscrip-
tion would give no consideration to the views of the deceased or the wishes of the immediate

11 A Cronin and J Harris, ‘Authorisation, Altruism and Compulsion in the Organ Donation Debate’ (2010) 36
Journal of Medical Ethics 627.
12 C Fabre,‘Reply to Wilkinson’ (2008) 14 Res Publica 137, 140.
13 ibid.
14 TM Wilkinson,‘The Confiscation and Sale of Organs’ (2007) 13 Res Publica 327, 327.

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family and would be motivated by sole concern for the therapeutic benefit or broader social
benefit in the use of the bodily material.
Regardless of how the interests under the legislative scheme are calibrated, all these schemes
represent ‘informal’ schemes.They are ‘informal’ in the sense that, where the underlying interests
conflict, there is no particular form or structure to the way the law addresses the conflicting
interests.The law prohibits some activities whilst enabling others on the basis of certain precon-
ditions being satisfied. Individuals are asked to exercise legal powers, either permitting extrac-
tion and use for particular or general purposes, or refusing permission.There are no rights to be
claimed or infringed, no duties to be imposed, performed, or breached.
An alternative is to view these interests in the posthumous use of bodily material as giving
rise to human rights. For instance, Article 3 of the Universal Declaration of Human Rights
guarantees that ‘everyone has the right to life, liberty and security of person.’15 Every person
may therefore have a right to the ‘security’ of his or her posthumous body. Article 22 guaran-
tees everyone ‘the economic, social and cultural rights indispensable for his dignity and the free
development of his personality.’16 Every person may therefore have ‘social and cultural rights’ to
determine how the body of a loved one is treated as an ‘indispensable’ aspect of his or her dignity
or personality. Article 25(1) guarantees everyone ‘the right to a standard of living adequate for
the health and well-being of himself ’ or herself ‘including …medical care.’17 Every person may
therefore have a right to have his or her life prolonged through the transplantation of bodily
material (or otherwise be a beneficiary of medical care through the use of bodily material). If
these rights apply, then the interests in the posthumous use of bodily material have a particular
form. They are rights. Moreover, they are human rights. In what follows, I will consider how
unhelpful it is to apply these formal structures to the use and control of bodily material.

Human rights
On the face of it, there is nothing wrong with these human rights claims. Specific claims can fall
under the ambit of general rights guarantees. In order to formulate these specific claims, human
rights guarantees provide us with a shared language for identifying the values that are at stake,
which triggers a particular institution- or discipline-specific way of reasoning about these values.
These human rights provide us with a starting point (or, as will become more apparent, two
starting points). I focus here on the ease with which human rights claims can be formulated. But
first, in order to frame what we mean by ‘human rights,’ I adopt John Tasioulas’ three hallmarks,
according to which, human rights represent:18

(1) The idea of each and every individual human being as an ultimate focus of moral concern;

15 The Universal Declaration of Human Rights 1948, Article 3: Everyone has the right to life, liberty, and security
of person.
16 The Universal Declaration of Human Rights 1948,Article 22: Everyone, as a member of society, has the right to
social security and is entitled to realisation, through national effort and international co-operation and in accord-
ance with the organisation and resources of each state, of the economic, social, and cultural rights indispensable
for his dignity and the free development of his personality.
17 The Universal Declaration of Human Rights 1948, Article 25(1): Everyone has the right to a standard of living
adequate for the health and well-being of himself and of his family, including food, clothing, housing, and medi-
cal care and necessary social services, and the right to security in the event of unemployment, sickness, disability,
widowhood, old age, or other lack of livelihood in circumstances beyond his control.
18 J Tasioulas,‘Towards a Philosophy of Human Rights’ (2012) 65 Current Legal Problems 1, 4.

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 Human tissue, human rights, and humanity

(2) The concern [for the individual human being] should… take the form of recognising
moral duties that are directly owed to these individual human beings, who have corre-
sponding rights to their performance;
(3) In virtue of our standing as human beings… we each possess certain rights, independently
of whether or not they are actually enforced or even recognised socially.

In this section, I explain how the relationship between the three hallmarks creates a ‘malleability’
that human rights discourse relies upon.The malleability of human rights, I will argue, enables
a discourse without enabling a constructive analysis.

Grounding the right

The first hallmark places the focus on ‘every individual human being,’ and specifically, the inter-
ests of ‘the putative right-holder, interests that are universal in the sense that all human beings
have them simply as human beings.’19 The second hallmark introduces a structural feature.That
is, human rights – as rights – impose corresponding duties. It then follows that to formulate a
human right requires two distinct stages: grounding the right and imposing the duty.
The first stage of grounding the right ‘takes into account only those individualistic values
(status and interests) of the putative rights-holder that are supposed to ground the existence of
the rights.’20 For instance, if we accept that a person has an interest in controlling how his or her
posthumous body is used, and since every person has this interest ‘by virtue of their humanity,’21
then Article 3 ‘right to security of person’ can be grounded in the status and interests of the
putative rights-holder. Equally, if we accept that a person has an interest in controlling how
the body of a deceased loved one is used, that each person has thus interest ‘by virtue of their
humanity,’ then (again) Article 22 ‘entitlement to social and cultural rights’ is engaged. And if
we accept that each person has an interest in a prolonged life, by virtue of his or her humanity,
then Article 25(1) ‘right to medical care’ is engaged. At this initial stage, we ask whether ‘in the
case of all human beings, it is “possible” to serve the underlying values through a duty with the
proposed content.’22 It is possible for each putative right – the right to posthumous control, the
right to familial control, the right to therapeutic use – to protect the moral properties that each
person has by virtue of his or her humanity.
However, these implications can be difficult to sustain. Recall that the very question of
whether, after his or her death, there is a ‘person’ for the purposes of Article 3, is contestable.
Similarly, it is difficult to specify why a family member ought to exercise control over the body
of a deceased person pursuant to Article 22.To claim that an implication of Article 25(1) is that
a person has a right to bodily material is just as unstable, as it is predicated on resources being
owed to a person, by way of some kind of obligation. Articles 3, 22, and 25(1) are ‘unstable’ in
the sense that the rights cannot be connected to any particular implication (as to the use and
control of bodily material, in this case) without specifying a range of further details about the
content of the rights themselves. In specifying these details, ‘we find that we have committed
ourselves to the description of an entire [normative] order’23 about personhood, the develop-

19 ibid 7.
20 ibid 15.
21 J Tasioulas,‘On the Nature of Human Rights’ in G Ernst and J-C Heilinger (eds), The Philosophy of Human Rights:
Contemporary (De Gruyter 2012) 26.
22 Tasioulas,‘Towards a Philosophy of Human Rights’ (n 18) 15.
23 M Tushnet,‘An Essay on Rights’ (1984) 62(8) Texas Law Review 1363, 1379.

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ment of a socialised personality, or standards of adequate healthcare. It is in this way, our rights
here are unstable. Disagreements about the details of the normative order – disagreements about
‘persons,’ ‘social rights,’ ‘standards of health’ – ‘can make it difficult to sustain the claim that a
right remains implicated.’24
We might then seek to avoid the specification of rights at the point of formulating the claim
and just presume that such claims can be grounded as ‘rights.’That is, we might allow the specific
claims to become human rights claims simply by virtue of the specific claims falling under the
general ambit of Articles 3, 22, and 25(1). If so, we have merely delayed the process of specifica-
tion.We encounter the same need to specify a normative order about personhood, personality,
and standards of healthcare, when we consider whether such rights can be subject to justified
limitations or – as is inevitable with regard to Articles 3, 22, and 25(1) – when we consider
which right has priority over the other conflicting rights.
However, human rights are only unstable (in the above sense) when we seek to connect a
practical implication with ‘the underlying values’ that the right serves. An alternative way of
‘grounding the right’ is to approach human rights as a standard that requires interpretation and
application. The first task of grounding the right then becomes more institutionally confined.
Where the institution is law, the analysis follows a certain discipline-specific mode of legal
reasoning. Hence, when we specify the contents of an institutionalised right in law, our rights
guarantees represent a set of standards the practical implications of which can be drawn from
the legal standards themselves. The reasoning goes that: because the drafters of the Universal
Declaration of Human Rights were ‘not in a position to be specific,’ it falls to adjudicators
(broadly construed) ‘to give substance to abstract categorizations,’25 since ‘determining the unde-
termined is one of the standard functions of adjudication.’26 Since Articles 3, 22, and 25 rely on
abstract concepts (‘dignity,’ ‘personality,’ ‘liberty,’ ‘security’), general categories (‘person,’ ‘social
and cultural,’ ‘health and wellbeing’), and broad standards (‘indispensable,’ ‘adequate,’ ‘realiza-
tion’), grounding the right is a task of specifying what practical implications fall within the
ambit of the application of these concepts, categories, and standards. Rather than connecting the
rights-claim with the underlying values that the rights guarantees seek to protect, a different set
of institutionally defined techniques are employed to interpret and specify what these concepts,
categories, and standards can be understood to require. In the institutional setting, grounding the
right requires the interpretation of legal materials. Outside of the institutional setting, ground-
ing the right requires the description of a normative order. As we shall now turn to consider,
the same duality between outside and inside the institutional setting can be found when we
consider the duties that logically follow from the grounding of rights.

Imposing the duty

The second stage of human rights ‘takes into account the implications of affirming the right
for other values and other persons, especially would-be duty-bearers.’27 At this stage, we need to
be able to show that ‘the underlying individualistic considerations of moral status and universal
interests suffice to generate duties with the same content.’28 That is, we need to show that the

24 ibid 1363.
25 T Endicott, ‘Legal Interpretation’ in Andrei Marmor (ed), Routledge Companion to Philosophy of Law (Routledge
2012) 114.
26 ibid 112.
27 Tasioulas,‘Towards a Philosophy of Human Rights’ (n 18) 15.
28 ibid.

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putative right-holder’s interest (in posthumous autonomy, embodied relationships, or health and
wellbeing) is sufficiently important to justify ‘the imposition of the self-same duties as being
owed to all human beings.’29
As the second hallmark alludes, human rights – as rights – have a particular structure. It is this
structure that differentiates rights from other norms, such as ‘interests,’ ‘goals,’ ‘values,’ or ‘con-
siderations.’ In particular, human rights impose correlative duties.These duties represent ‘reasons
for action of a special kind.’30 The duties that follow from observing a right are ‘categorial’ in the
sense ‘that their application to the duty-bearer, and their weight or stringency, is independent
of the latter’s motivation.’31 The duties that follow are ‘exclusionary’ in that the duties represent
reasons for action that ‘exclude at least some of the latter from bearing on what all-things-con-
sidered the duty-bearer should do.’32 Finally, a breach of the duties that follow from observing a
right ‘typically justifies a distinctive range of moral responses.’33
It follows, therefore, for Tasioulas, that the ‘distinguishing feature of human rights is to erect
powerful, if not absolutely insurmountable, barriers against trade-off[s].’34 Raz presses this point
further: the ‘rights’ (and correlative duties) in human rights ‘mark out a normatively exceptional
domain’ where such rights ‘deserve protection even if that requires exceptional measures.’35
Failure to engage in this second stage of rights reasoning ignores ‘the possibility of believing
that certain conditions are essential to our life, and even of striving to secure such conditions,
without either claiming or having a right to them.’36 The concern here is that, if we assign
human rights with the task of marking out a normatively exceptional domain, then human
rights can only perform that task ‘if people do not have human rights to everything which will
or may improve the quality of their life.’37 Whilst our putative right-holder may have an interest
in posthumous autonomy, embodied relationships, or health and wellbeing, the interest needs
to be sufficiently important to generate duties (reasons for action of a special kind) on others
to enable the exercise of posthumous autonomy, the expression of embodied relationships, or
access to healthcare resources.
In an institutional setting, this second stage of imposing duties is burdensome. To start, to
impose a duty is to identify a duty-bearer. In the context of rights to bodily material, this is
most likely to be a public healthcare provider, who may be under a duty to obtain consent for
posthumous use of bodily material, or obtain bodily material without consent (depending on
which right is being engaged). Imposing a duty also requires an account of why the duties owed
to the rights-bearer ought to amount to exclusionary and categorial reasons, and a distinctive
range of remedial responses ought to be available to the adjudicator. In the context of bodily
material, we need to account for why a public healthcare provider ought to act on one set of
reasons – either acting out of respect for the progenitor’s posthumous interests, the familial
interest, or the therapeutic interests – to the exclusion of the other applicable reasons. Finally,
imposing a duty requires some kind of remedial response to failure to perform the duty. Once

29 ibid 14.
30 Tasioulas,‘On the Nature of Human Rights’ (n 21) 27.
31 ibid 27.
32 ibid.
33 ibid.
34 Tasioulas,‘Towards a Philosophy of Human Rights’ (n 18) 8.
35 J Raz,‘Human Rights Without Foundation’ in S Besson and J Tasioulas (eds), The Philosophy of International Law
(Oxford University Press 2010) 321, 329.
36 ibid 321, 325.
37 ibid 321, 326.

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we understand what it means to impose a duty in an institutional setting, we can begin to

appreciate the gap between something being valuable (and having reasons to strive towards the
standard) and an individual having a right to it (and thereby imposing a special set of reasons for
action on a duty-bearer).
Outside of an institutional setting, the reasoning can be more aspirational than practical.
Whilst we may affirm a right, and thereby implicate duties, such ‘duties’ can represent general
reasons for ‘striving to secure the conditions’ that enable the exercise of the right. As ‘outside
rights,’ where human rights represent aspirational values, the duties that they generate are ‘rea-
sons’ to respect the human right. Inside the institutional setting,‘inside’ human rights represent
standards, the duties that they generate are categorial, exclusionary, and remedial reasons to
respect the human right. In this way, human rights represent either a moral standard that institu-
tions ought to translate into a practical setting or a moral value that institutions ought to aspire
to adhere to. Human rights – and duties – are therefore configured differently, depending on
whether they are inside or outside an institutional setting.

The malleability of human rights

As I have already implied, human rights guarantees – such as the Universal Declaration of
Human Rights – have a double life. ‘For lawyers,’ Tasioulas explains, human rights are a set of
principles that ‘possess… a legal-institutional embodiment’ that favours ‘standards that can be
applied without extensive reliance on the exercise of moral judgment.’38 In comparison, for phi-
losophers,‘the principles form part of the broader web of propositions that comprises a theory
of morality or some segment of it.’39 The problem that I will highlight here is that this double
life enables human rights discourse to be malleable.That is, each human rights guarantee medi-
ates – goes back and forth between – being a set of values (or ‘outside rights’) and a set of stand-
ards (or ‘inside rights’). It is this ambiguity between human rights as values (or ‘outside rights’)
and human rights as standards (or ‘inside rights’) that enables the human right to be malleable,
moulded, and manipulated. In our reasoning about bodily material, a human rights guarantee
can either be a value external to the legal system that legal standards ought to aspire towards or
a standard internal to the legal system, depending on what suits the human rights protagonists.
Let us start with human rights as ‘values’ (or ‘outside rights’).There is an important sense in
which human rights represent something greater than the legal system that the rights belong
to, whilst still being able to guide our reasoning within that legal system.This follows from the
third hallmark of human rights, that each person has rights ‘in virtue of our standing as human
beings’ which we ‘each possess certain rights, independently of whether or not they are actually
enforced or even recognised socially.’40 By protecting the moral properties that each person has
by virtue of his or her humanity, human rights ‘follow from values that are neither arbitrary or
subjective because they are universal.’41 They are, therefore, ‘“universal” in the sense that they
derive from needs and values or preferences that every person shares or ought to share’ inde-
pendently of the institutions that may seek to uphold and protect human rights.42 In this way,
human rights facilitate for us ‘a relatively objective, rational, determinative discussion of how

38 Tasioulas,‘Towards a Philosophy of Human Rights’ (n 18) 4.

39 ibid 4.
40 ibid.
41 D Kennedy, ‘The Critique of Rights in Critical Legal Studies’ in Wendy Brown and Janet Halley (eds), Left
Legalism/Left Critique (Duke University Press 2002) 178, 185.
42 ibid.

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[human rights] ought to be instantiated in social or legal rules.’43 In our legal reasoning, these
rights sit ‘outside’ an institutional practice – such as law – in the sense that whether or not a legal
system recognises a particular human right, it remains the case that the law ought to give effect
to the right. Human rights reasoning, where the rights are ‘outside’ rights, is then an exercise of
translation; ‘translating the pre-existing natural entity or concept into particular legal rules by
examining its implications in practice.’44
At the same time, human rights are ‘standards’; they are rights ‘inside’ the legal system. By
virtue of the Universal Declaration of Human Rights, or by virtue of the domestic enactment
of these human rights, each legal system acknowledges the existence of a legal right (to per-
sonal security, cultural rights, medical care, and so on). Moreover, ‘once you acknowledge the
existence of the right, then you have to agree that its observance’ has implications for the legal
system.45 Human rights form part of the canon of legal materials that we are required to inter-
pret and apply. In our legal reasoning, human rights are ‘inside rights’ in the sense that faithful
application of the law includes fidelity to the human rights guarantees, and this ‘interpretative
fidelity’ requires observance of the implications that follow from the human rights guarantees.46
Human rights guarantees therefore ‘occupy an ambiguous status in legal discourse, because
they can be either rules or reasons for rules.’47 To be clear, the distinction between values and
standards is commonplace to legal reasoning. Legal rights can justify the interpretation of other
legal rules and legal rights can constitute legal reasons for developing legal rules in a certain
way.48 Put another way, human rights as reasons and human rights as standards form part of the
interpretative materials, notwithstanding the distinction between reasons and standards. They
add to the body of materials that are internal to the legal system whilst also providing values
external to the legal system that the body of materials ought to adhere to. However, the criticism
here is that any given human rights–based claim can move back and forth between these two states
or modes of reasoning.As Kennedy explains:49

On one side, the argument from [human] rights is legal, because it is based on one of
the enacted rules of the legal system
… on the other, it is normative or political, because it is in the form of an assertion
about how an outside right should be translated into law.

Human rights discourse can therefore trade on this ambiguity. By arguing that an implication
follows from the observance of a right, the argument can simultaneously draw upon the internal
membership of the right to the legal system and the external moral value that the legal system
ought to promote or adhere to.
To formulate a rights-based argument, the human rights protagonist can ground the right
as an internal (institutional) standard. Since the existence of the right is grounded in an institu-
tional context, the protagonist avoids the ‘instability of the right.’That is, he or she avoids having
to specify the normative order that the rights-claim is presumed upon. Instead, the protagonist

43 ibid.
44 ibid 178, 186.
45 ibid 178, 185.
46 ibid.
47 ibid.
48 J Raz,‘Legal Rights’ in J Raz (ed), Ethics in the Public Domain (Clarendon Press 2001) 265.
49 Kennedy (n 44) 178, 187.

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can rely on the right as a standard that has a set of implications that follow from interpretative
fidelity to the standard.At the same time, the protagonist can ground the duty as something that
is outside of the institutional setting, as duty that should be translated into law, thereby avoiding
the three-fold burden of grounding a duty in an institutional context.
Consider how the rights in our three rights-based claims have to move between being an
outside value and an inside standard:

The problem with the Article 3 claim is that the right itself is unstable; it is difficult
to sustain the contention that a deceased person remains a ‘person’ to whom we owe
duties of respect. However, we can avoid the instability of the right by approaching the
question of ‘person’ (under Article 3) as an institutional question of legal interpretation.
The problem with the Article 22 claim is that whilst we can accept we have reasons
to respect the interest of the grief-stricken in controlling the posthumous body, it is
difficult to ground such reasons as exclusionary reasons; excluding the consideration
of countervailing interests (such as the progenitors wishes or the therapeutic benefit).
However, we can avoid the burden of the duty by approaching the human right as a
value; something that healthcare providers ought to promote.
The problem with the Article 25(1) claim is that the respect of the right requires
exclusionary reasons for the healthcare provider to obtain bodily material; reasons that
exclude consideration of the progenitor’s or the family’s wishes. We can nonetheless
formulate the human rights claim by approaching the right as a standard (or inside
right) and approaching the correlative duty as a value (or outside right).

More broadly, the implication here is that carving out a ‘normatively exceptional domain’ –
grounding stable rights and imposing burdensome duties – is (as it should be) exceptional. It
follows that there ought to be very few global health rights, and none of them should concern
bodily material. However, because of the malleability of human rights, having a double life of
being inside and outside rights, there are no barriers to entry into formulating human rights
claims to bodily material. Whilst we ought to write about our shared ideas on global health
rights, in order to concretise our ethereal aspirations, we need to consider whether the human
rights discourse accurately prescribes how we ought to think about what we owe one another.
In the next section, I suggest that, with regard to bodily material, human rights do not.

Humanity
Perhaps a human rights protagonist will be willing to concede ‘that human rights morality is not,
in the first place, a code, but a distinctive moral sensibility,’50 and suggest that the translation of
the moral sensibility into an institutional practice is a difficult but laudable goal. Moreover, the
protagonist may nonetheless persist that ‘there is the value that consists in the equal basic moral
status of all human beings’ and this value has ‘implications for a variety of agents and contexts.’51
We should, the argument goes, approach human rights (and, perhaps, global health rights) as a
‘distinctive moral sensibility’ that affirms (1) ‘each and every individual human being as an ulti-
mate focus of moral concern,’ that (2) recognises ‘moral duties that are directly owed to these

50 Tasioulas,‘Towards a Philosophy of Human Rights’ (n 18) 4.

51 ibid 26.

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individual human beings, who have corresponding rights to their performance,’ (3) ‘in virtue of
our standing as human beings.’52
The fallback position here is that human rights guarantees provide a way to structure our
analysis, and to focus our discourse, around individual human beings, their rights to bodily
material, and the duties that such rights entail. In this section, I argue against this fallback posi-
tion.This human rights ‘sensibility,’ I argue, misrepresents our relationship with our own bodily
material and the bodily material of others.
Articles 3, 22, and 25(1) guarantee individual human rights. An individual has a right to
the security of his or her person, an individual has the right to exercise the social and cultural
rights that are indispensable for his or her dignity, and an individual has the right to medical
care.Through the implementation of the right, each individual rights-holder can further his or
her own interests and preferences without any concern for how their interests and preferences
impact the position of others.The human rights (and duties) that are implemented carve out the
normative spaces where individuals can ‘legitimately’ pursue their own self-interest.The ‘value
that consists in the equal basic moral status of all human beings’ quickly becomes the ‘value of
self-interested individuals pursuing their own interests.’We are motivated to respect the human
rights of others because of our shared standing ‘as human beings,’ even where the exercise of
those human rights demonstrates no concern for our shared humanity. If implemented under
Article 3, a person is granted the power to exercise posthumous control over his or her bodily
material, for whatever reason (or for no reason at all), without consideration of the interests of
others. Similarly, under Articles 22 and 25(1), the right to exercise social or cultural rights and
the right to medical care, if they are implemented as human rights, allow the pursuit of self-
interest.
The aspiration is that, if we can make ‘a sharp distinction between one’s interests and those
of others, combined with the belief that a preference in conduct for one’s own interests is
legitimate’, then human rights rules will ‘make it possible to coexist with others similarly self-
interested.’53 This structures our reasoning in favour of individualism and self-reliance. We can
legitimately pursue our self-interest, the reasoning goes, by imposing duties that are owed to
us by others, ‘without being dependent on them or asking sacrifices of them.’54 This is at the
expense of altruism and the inclination to ‘make sacrifices, to share, and to be merciful.’55 In
some contexts, this individualistic sensibility may be warranted. The individualistic sensibility
is, however, the antithesis of the sensibility that we ought to adopt with regard to posthumous
bodily material. Let us therefore contrast the human rights sensibility with a ‘solidarity’ sensibil-
ity that we ought to adopt.
We can understand the right to security of persons as preserving a person’s exclusive use and
control over his or her embodied existence at any given point of time, where the body is ‘the
medium through which we exercise our autonomy, experience preference satisfaction, and form
relationships (or however our subjectivity is expressed).’56 Independent of this condition, where
the body is not ‘the vehicle of being in the world,’57 there is nothing individualistic about our
bodies.As Herring and Chau have explained:58

52 ibid 4.
53 D Kennedy,‘Form and Substance in Private Law Adjudication’ (1976) 89 Harvard Law Review 1685.
54 ibid.
55 ibid.
56 Wall, Being and Owning (n 7) 183.
57 M Merleau-Ponty, Phenomenology of Perception (C Smith, trans), (Routledge 2003) 94.
58 J Herring and P-L Chau,‘My Body,Your Body, Our Bodies’ (2007) 15 Medical Law Review 34, 51.

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 Jesse Wall

our bodies are often in a state of dependency on other bodies… our bodies are con-
stantly interacting and reacting with the world around us… our bodies are not immu-
table entities, but are constantly changing and recreating themselves.We need to move
away from a vision of a society of bodies which are only of concern to ourselves and
recognise that to a significant degree, our bodies depend on other bodies and the
world around us for their meaning and survival.

There is a subtlety in the human body; bodies are exclusively ours whilst still being connected
to others.These are overlapping states.Whilst our current body is the vehicle for ‘being in the
world,’ our bodies are also connected with, and dependent upon, others. For instance, the cur-
rent state of our bodies is (in part) determined by a genetic code that we inherit and pass on, the
fruits of medical research that other bodies have contributed to, the sharing of bodily material
between people, and a physical environment that other people and other organisms contribute
to. Our bodies are exclusively ours when the body is integrated with our subjectivity; at the
same time, our bodies are shared in the sense that an individual ‘always contains a trace of the
other.’59 There are also important instances where the overlap ends, such as where the body is no
longer the way in which we engage and experience the world, but the interconnectedness of the
body remains.The key point is that the individualistic sensibility of human rights is too blunt to
appreciate this subtlety. If the Article 3 right to security of person is extended posthumously, the
body remains within the exclusive domain of the rights-holder.
The same is true for the purposed Article 22 right. Our bodies provide a ‘medium of social
perception,’60 that is a medium ‘common to myself and others’61 where ‘certain unique ways of
moving, gesturing, speaking, laughing, and so forth, express my bodily being.’62 For friends and
family, a body may continue to represent this bodily being posthumously in a meaningful way,
and the social and cultural practices around the treatment of a deceased body may be indispensa-
ble to the development of the personality of the grief-stricken. Nonetheless, the social and cul-
tural practices around the respectful treatment of deceased persons are not static. Nor do social
and cultural practices necessarily require exclusive use and control of the body. It is possible
for such practices to develop in a way that is more facilitative of the posthumous use of bodily
material.There is, again, a subtlety in the body of another continuing to represent the deceased
person and being the medium of social experience, and the organs and tissue of the deceased
person not performing a social or cultural task but potentially performing a therapeutic or
scientific role. Social and cultural practices can adapt around this subtlety, where the subtlety
is translated as a call for altruism in light of overlapping interests and needs.The subtlety does
not translate well into the individualistic sensibility of human rights, where it is translated into
a sensibility of self-reliance and the pursuit of self-interest. If the Article 22 right is extended to
social and cultural rites over the body of the deceased person, the right has exclusionary force,
its structure excludes the needs of others.
At the same time, if a potential therapeutic beneficiary has a right to the medical care, the
right implicates categorial and exclusive reasons on the part of the individual progenitor or the

59 I Karpin, ‘Genetics and the Legal Conception of Self ’ in M Shildrick and R Mykitiuk (eds), Ethics of the Body
(MIT Press 2005); Herring and Chau (n 58) 34, 49.
60 T Carman, Merleau-Ponty (The Routledge Philosophers, Routledge 2008) 141.
61 ibid.
62 SK Toombs, ‘What Does it Mean to Be Somebody?: Phenomenological Reflections and Ethical Quandaries’ in
MJ Cherry (ed), Persons and Their Bodies: Rights, Responsibilities, Relationships (Kluwer Academic Publishers 1999)
79, 82.

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grief-stricken to confer the therapeutic benefit.This misrepresents the relationship between the
progenitor or family member and the potential therapeutic beneficiary.The potential therapeu-
tic benefit may provide reasons to donate human tissue. Ordinarily, such a reason ought to be
weighed against competing reasons. However, if there is a right to human tissue, the correlative
duty has the normative effect of excluding countervailing reasons.The wishes of the deceased,
or his or her family members, are excluded from consideration by the duty-bearer (healthcare
provider) by virtue of individual rights-based sensibility.
Human bodies therefore possess subtle layers of meaning. Bodies are the way in which we
experience and engage in the world, they are the way in which others interact with us, and our
bodies belong to the shared project of humanity, where our wellbeing has always been depend-
ent upon others.The sources of meaning require ordering. In practice, the law must facilitate a
decision-making process with regard to the use and control of bodily material, that ultimately
elevates certain interests over others. My contention here is that this task of ordering preferences
and interests is better performed by informal structures. Our embodied, physical and emotional
wellbeing is always dependent on others. It relies on others making sacrifices for us, and vice
versa.The use and control of bodily material ought to be premised upon the same of altruism
and the inclination to ‘make sacrifices, to share, and to be merciful.’63 A legal structure that seeks
permission to use bodily material and asks individuals to consider the interest of others is a
closely aligned legal iteration of this altruistic inclination.
In comparison, this task is performed poorly by formal structures, such as human rights. If
we take ‘each and every individual human being as an ultimate focus of moral concern’ then we
construct a tension between three ostensible rights-holders, all of whom are ‘the focus of moral
concern.’64 If we recognise ‘these individual human beings… have corresponding rights to their
performance,’65 then we structure this tension by the ‘making of a sharp distinction between
one’s interests and those of others combined with the belief that a preference in conduct for
one’s own interests is legitimate.’66 Our relationship with our body and the bodies of others is
a state of dependence, connectedness, and sharing.The human rights sensibility is the antithesis
of our embodied state.
Allow me to summarise with reference to a strained analogy. One explanation for the demise
of the Neanderthal and the rise of Homo sapiens is that the latter were able to identify with a
much larger network or community.67 In the event of conflict, regardless of the tools at hand,
access to resources, or physical prowess, a community of 500 will defeat an extended family of
60. Human rights structure our thinking like that of the Neanderthal, an individual (and his or
her family) claims the right to posthumous control.An individual (and his or her family) claims
a right to bodily material as part of his or her right to medical care. Beating our chests we assert
these rights.With sharpened spears we attempt to impose duties.Whereas, we need to identify
with humanity. Our bodies are not mere surplus resources, nor are our bodies exclusively ours,
nor are they the sole domain of our family we leave behind. Rather, we belong to something
greater. Informal legal structures enable this evolution in our thinking, away from individualism
and self-reliance and in favour of altruism and the inclination to make sacrifices and to share.

63 Kennedy,‘Form and Substance in Private Law Adjudication’ (n 53).

64 Tasioulas,‘Towards a Philosophy of Human Rights’ (n 18) 4.
65 ibid.
66 Kennedy,‘Form and Substance in Private Law Adjudication’ (n 53).
67 A Gat,‘Social Organization, Group Conflict and the Demise of Neanderthals’ (1999) 39(4) Mankind Quarterly
437.

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 Jesse Wall

Human rights–based structures extinguish this thinking. We ought therefore to reject human
rights discourse when it is contrary to how we aspire to live and relate to one another.

Conclusion
In the background of this chapter has been a fabricated conversation between two great (but
generally opposing) theorists of rights: John Tasioulas and Duncan Kennedy. In this chapter, I
have sought to deflate the utility of human rights discourse by demonstrating how the discourse
can shift between non-institutional and institutional settings in a way that suits the human
rights protagonist. This enables rhetoric without analysis. Tasioulas and Kennedy might both
have constructive responses. Tasioulas might respond by suggesting that we can ‘find support
from any eligible ordering of the basic interests that are the components of a good human life’
without having to link ‘human rights conceptually with particular institutional arrangements or
roles.’68 Kennedy might also explain that when we try to link human rights with institutional
arrangements, we can ‘manipulate the plastic substance of legal reason to achieve the results that
are correct in terms of outside rights.’69
For both responses, the answer rests on ‘the basic interests that are the components of a good
human life’ that are ‘outside’ any ‘particular institutional arrangement.’ I have argued here that
the informal legal structures of human tissue legislation identify and prioritise the basic inter-
ests in the use and control of bodily material in a manner preferable to formal human rights
structures. Furthermore, no one can have a moral right to posthumous bodily material since
no one person occupies the normative position to pursue his or her own interests without
the consideration of the interests of others. Given that no moral – or ‘outside’ – human right
exists, there is no need to institutionalise any human right to bodily material. Even further, in
the context of bodily material, where the subtle layers of meaning supervene on the body, the
Universal Declaration of Human Rights and ‘human rights sensibility’ are regressive. Perhaps
even Neolithic.

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(Routledge 2012).
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Quarterly 437.
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Karpin, I, ‘Genetics and the Legal Conception of Self ’ in M Shildrick and R Mykitiuk (eds), Ethics of the
Body (MIT Press 2005).
Kennedy, D,‘Form and Substance in Private Law Adjudication’ (1976) 89 Harvard Law Review 1685.

68 Tasioulas,‘Towards a Philosophy of Human Rights’ (n 18) 29.

69 Kennedy,‘The Critique of Rights in Critical Legal Studies’ (n 41) 178, 209.

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Kennedy, D,‘The Critique of Rights in Critical Legal Studies’ in Wendy Brown and Janet Halley (eds), Left
Legalism/Left Critique (Duke University Press 2002).
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Partridge, E,‘Posthumous Interests and Posthumous Respect’ (1981) 91 Ethics 243.
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Raz, J,‘Legal Rights’ in J Raz (ed), Ethics in the Public Domain (Clarendon Press 2001).
Raz, J,‘Human Rights Without Foundation’ in S Besson and J Tasioulas (eds), The Philosophy of International
Law (Oxford University Press 2010).
Tasioulas, J,‘On the Nature of Human Rights’ in G Ernst and J-C Heilinger (eds), The Philosophy of Human
Rights: Contemporary (De Gruyter 2012).
Tasioulas, J,‘Towards a Philosophy of Human Rights’ (2012) 65 Current Legal Problems 1.
Toombs, SK, ‘What Does it Mean to Be Somebody?: Phenomenological Reflections and Ethical
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331
 19
AUTONOMY AND THE RIGHT
TO (END ONE’S?) LIFE
A German perspective

Carsten Momsen and Mathis Schwarze

Recent years have been marked by major developments in the legal situation surrounding
assisted suicides (AS) in Germany. Most notably, in 2015 a law was passed to criminalise the
‘business-like’ provision of assistance with suicide (§ 217 Strafgesetzbuch1), aiming to ban so-
called ‘right-to-die organisations.’ A little over four years later, in February 2020, the German
constitutional court (Bundesverfassungsgericht) declared the offence unconstitutional – the very
first time the court annulled an offence under the core penal code. Interestingly, the centrepiece
of the reasons given both for the law’s passing in the first place and for its subsequent annulment
was the protection of autonomy at the end of life. The legislator, on one side, emphasised the
(alleged) dangers of free access to ‘business-like’ AS services on autonomy, invoking the state’s
duty to uphold the right to life and human dignity.The constitutional court, on the other side,
was concerned with the practical consequences the criminalisation of ‘right-to-die organisa-
tions’ had on those individuals wishing to carry out an autonomously derived end-of-life deci-
sion. In its landmark ruling, the court developed a constitutional ‘right to a self-determined
death’ – which the new § 217 had violated.
What, then, are ‘right-to-die organisations’ really – a threat to autonomy or indispensable
helpers in exercising autonomous end-of-life decisions? This chapter aims to make sense of
autonomy’s place between the right to life and the newly created right to a self-determined
death. The chapter maps out the recent tumultuous developments in the realm of organised
assistance with suicide and re-examines the debate that surrounded its criminalisation.

Overview
This chapter is divided into four parts. First, the general legal framework surrounding AS in
Germany as it was in force before the introduction of § 217 (and as applicable again after its
annulment) is outlined. Second, the offence’s parliamentary history, nature, and official justifica-

1 In citing legislation, we use the German style of legal citation;‘§’ is the symbol for ‘section,’ see Michael Bohlander,
Principles of German Criminal Law (Bloomsbury 2008) 4. All sections mentioned have reference to the German
penal code (Strafgesetzbuch).

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 Autonomy and the right to (end one’s?) life

tion are defined.Third, the Bundesverfassungsgericht’s ruling is outlined and questions concerning
the reach of legislative discretion are touched on. Finally, an overview on the debate surrounding
the criminalisation of organised assistance with suicide in Germany is offered and some of its
most common arguments – the ‘slippery slope argument,’ the argument from human dignity, the
danger of conflicts of interest, and the role of mental disorders – are critically evaluated.

The legal framework surrounding assisted suicides in Germany

Completing suicide (or attempting to) is not a criminal offence in Germany – the actus reus of
both manslaughter (Totschlag, § 212) and murder (Mord, § 211) requires the intentional killing of
another person (other than might be implied by the still commonly used term Selbstmord [‘self-
murder’]2). Due to the dependence of the German accessory liability on a principal offence, the
impunity of suicide itself generally also excludes criminal liability for a person intentionally aid-
ing and abetting (Beihilfe) or instigating (Anstiftung) the suicide. Different from most European
states, no specific offence for aiding a suicide existed before the introduction of § 217 either.3
This – formally derived – impunity of assistance with suicide is traditionally justified with the
principle of personal responsibility4 and the criminal law’s purpose to protect legal goods5 (on
which, see section titled ‘The “doctrine of legal goods” [Rechtsgutslehre]’).Taking one’s own life
does not harm the legal goods of others, and assisting with a suicide does not harm the legal
goods of the person voluntarily ending his or her life. However, following a classic ‘soft’ pater-
nalistic rationale, this is only accepted to the extent that the end-of-life decision was formed
autonomously. If liberty is understood to consist of ‘doing what one desires,’6 it is not an infringe-
ment of liberty to prevent non-voluntary self-inflicted harm. Consequently, assisting the suicide
of a legally incompetent individual is a criminal offence in Germany. If acting intentionally regard-
ing the suicidal person’s lack of legal competence, the assisting party is liable as a ‘principal by
proxy’ (mittelbarer Täter) for the offences of manslaughter or murder, or if acting negligently, for
involuntary manslaughter (fahrlässige Tötung, § 222).
On this theoretical basis, the impunity of AS is attached to two key criteria – the presence of
an autonomous end-of-life decision and the fact that the death was a ‘genuine’ suicide (and not a
homicide committed by a third party). Both criteria are contested in their scope and sometimes
imprecise application.The leading approach to determining autonomy is to apply the principle
of consent and ask whether the suicidal person could have validly consented to being harmed by
someone else.7 This is particularly difficult when the suicidal individual suffers from mental disor-
ders (as is mostly the case, see section titled ‘The role of undiagnosed and diagnosed mental dis-
orders’), is a child or adolescent, or when coercion or errors in motivation have been involved.
The second aspect seems self-explanatory, but the distinction between suicides and homicides

2 Cf Dagmar Fenner, Suizid – Krankheitssymptom oder Signatur der Freiheit? Eine medizinethische Untersuchung (Alber
2008) 9, who rightly points out that ‘vitalists’ often use the term to emphasise the purported moral reprehensibil-
ity of suicides; A Bahr,‘Between “Self-Murder” and “Suicide”:The Modern Etymology of Self-Killing’ (2013) 46
Journal of Social History 620.
3 E.g. Article 151 of the Polish Criminal Code (Kodeks karny): ‘Whoever, by incitement or by providing assistance,
induces a human to make an attempt on his own life, is subject to the penalty of deprivation of liberty for between
3 months and 5 years.’
4 E.g. Ulfrid Neumann, ‘Die Strafbarkeit der Suizidbeteiligung als Problem der Eigenverantwortlichkeit des
“Opfers”’ [1987] Juristische Arbeitsblätter 244.
5 E.g. Dorothea Magnus, Patientenautonomie im Strafrecht (Mohr Siebeck 2015) 244.
6 John Stuart Mill, On Liberty (Ticknor and Fields 1863) 186.
7 BGH NStZ 2012, 319.

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 Carsten Momsen and Mathis Schwarze

is not always clear-cut either. In a famous case decided by the German Federal Supreme Court
(Bundesgerichtshof), the defendant convinced his blindly trusting victim that he was an inhabitant
of the star Sirius.8 He persuaded the victim to end her ‘present life’ by letting a hairdryer fall into
the bathtub (aiming to profit from her life insurance).The victim proceeded as she was told, but
believed that she would awaken again in a new body on Lake Geneva. Here, the victim did not
form a decision to die in the first place, and the control over the fatal act (Tatherrschaft) lay with
the defendant. Apart from the difficult questions of detail the application of these criteria can
raise, the general framework surrounding AS provides for a simple distinction: Being the principal
of a homicide offence is punishable, but merely aiding a suicide is possible with impunity.

‘Business-like’ assistance with suicide – § 217

In December 2015, however, the general impunity of assisting the suicide of a competent indi-
vidual was overturned by the introduction of § 217 – assistance with suicide was now a crimi-
nal offence if conducted in a ‘business-like’ manner (geschäftsmäßige Förderung der Selbsttötung).
The law was passed after years of fierce public and political debate, kindled by the beginning
emergence of ‘right-to-die organisations’ in Germany. In 2005, the Swiss organisation ‘Dignitas’
opened a branch office in Germany to mediate their AS services offered in Switzerland. In
2008, Hamburg’s former secretary of justice, Roger Kusch, founded an organisation called
‘Sterbehilfe Deutschland e.V.’ that offered AS services for the first time in Germany.The objec-
tive was to spare concerned individuals the journey to Switzerland, allowing them to die at
home. The authorities soon revoked the commercial permission of ‘Sterbehilfe Deutschland,’9
but it resumed activities under the roof of an association based in Switzerland (‘Verein StHD’).
Together, the two organisations assisted with 77 suicides between 2010 and 2012.10 Moreover,
a small number of individuals reportedly performed assistance with suicide independently. For
instance, the explanatory notes on § 217 mention a Berlin physician who had supposedly assisted
in 200 cases of suicide in the last 20 years.11
Based on the legal situation outlined above, the practice of assisting the suicides of legally
competent individuals – ‘business-like’ or not – was not a criminal offence. The lawmakers
felt this was a ‘regulatory gap.’12 In the legislative process, four competing bills were intro-
duced and the obligation to follow the party whip was suspended, allowing MPs to make
a conscience-based decision. The proposed legislation ranged from explicitly permitting AS
through a provision in the civil code,13 to the criminalisation of all forms of AS.14 Ultimately, a
bill that criminalised the ‘business-like’ (geschäftsmäßige) provision of assistance with suicide was
adopted. The criterion of ‘business-like conduct’ simply defined assistance with suicide being
offered repeatedly (or with the intention thereof)15; the conduct did not have to be ‘commercial’

8 BGHSt 32, 38; see discussion in Markus D Dubber and Tatjana Hörnle, Criminal Law: A Comparative Approach
(Oxford University Press 2014) 583–87.
9 VG Hamburg MedR 2009, 550.
10 Henning Rosenau and Igor Sorge, ‘Gewerbsmäßige Suizidförderung als strafwürdiges Unrecht? Kritische
Anmerkungen zum Regierungsentwurf über die Strafbarkeit der gewerbsmäßigen Förderung der Selbsttötung
(§ 217 StGB-E)’ (2013) 25 Neue Kriminalpolitik 108.
11 BT-Drs. 18/5373, 9.
12 ibid.
13 BT-Drs. 18/5374.
14 BT-Drs. 18/5376.
15 BT-Drs. 18/5373, 2.

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 Autonomy and the right to (end one’s?) life

or ‘for-profit’ (gewerbsmäßig) as proposed by a competing bill.16 This low threshold was supposed
to extensively cover the work of ‘right-to-die organisations’ which usually operated on a non-
profit basis.
According to the explanatory memorandum, the offence was intended to counteract the
negative consequences the spread of AS services might have on personal autonomy.The legisla-
tor saw a danger of conflicts of interest where assistance with suicide was provided for-profit,
and also in the (more realistic) cases of non-profit conduct. Further, it was feared that the exist-
ence of ‘right-to-die organisations’ would foster the ‘acceptance’ or ‘normalisation’ of assisted
suicides in society, and that eventually even a ‘social demand for completing suicide’ could be
the result.17

The Bundesverfassungsgericht’s ruling

After § 217 came into force, the organisations affected by the offence as well as a number of
individuals filed complaints of unconstitutionality with the Bundesverfassungsgericht. In February
2020, the court decided that § 217 was indeed unconstitutional and annulled the offence.18 It
ruled that the general right of personality includes the ‘right to a self-determined death.’ This
right also extends to every individual’s decision to end his or her life by his or her own hand,
and includes the search for and use of outside help in completing suicide.Thus, the court created
a constitutional right to (assisted) suicide.19

Constitutional proportionality (Verhältnismäßigkeit)

As § 217 encroached on this newly developed right by criminalising certain forms of AS, the
court had to scrutinise the law as to its constitutional proportionality (Verhältnismäßigkeit).
Proportionality is the standard constitutional test applied by the Bundesverfassungsgericht in deter-
mining that a law, judicial decision, or administrative act is in accordance with the rule of law.20
The proportionality test is a four-step procedure: the state measure in question must have a
legitimate objective (1); it must be both suitable (2) and necessary (3) to achieve this objective;
and it must satisfy the requirement of adequacy (or ‘proportionality in the narrow sense’) (4).
The Bundesverfassungsgericht regularly affirms the idea of the criminal law as an ultima ratio that
should be used ‘very cautiously.’21 All the same, the court usually applies the proportionality
test to criminal offences in such a reserved manner that legislative discretion remains largely
untouched.22 Specifically, the legislator is given free rein in its choice of a policy goal as long as
this goal is itself constitutional,23 and the court only reviews (criminal) legislation as to whether
it is manifestly unsuitable, unnecessary, or inadequate.24 This stance has resulted, for example, in
a decision in which the court found the German incest offence (§ 173) to be constitutional

16 BT-Drs. 18/5375.
17 BT-Drs. 18/5373, 2.
18 BVerfG NJW 2020, 905.
19 Volker Boehme-Neßler,‘Das Grundrecht auf Suizid’ (2020) Neue Zeitschrift für Verwaltungsrecht 1012.
20 E.g. Grzeszick,‘GG Art. 20’ in Theodor Maunz and Günter Dürig (eds), Grundgesetz-Kommentar (90th edn, CH
Beck 2020) marginal numbers 107ff.
21 BVerfGE 39, 1, marginal number 162.
22 Claus Roxin and Luís Greco, Strafrecht Allgemeiner Teil, vol I (CH Beck 2020) 75.
23 Grzeszick (n 20) marginal number 111.
24 Cf Roxin and Greco (n 22) 75.

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 Carsten Momsen and Mathis Schwarze

despite serious questions on the offence’s purpose aside from enforcing a culturally conveyed
sexual moral.25 Of course, the judicial self-restraint shown by the court is in principle to be wel-
comed in a democracy under the rule of law, where the separation of powers is a central value.
However, the degree to which judicial self-restraint is warranted is highly contested. For instance,
the Bundesverfassungsgericht was widely criticised for having left too much leeway to the legislator
in the aforementioned ‘incest case,’ and one justice, the late Winfried Hassemer, dissented26 (a
rare event in German constitutional jurisprudence).

The ‘doctrine of legal goods’ (Rechtsgutslehre)

More circumscribed requirements for the exercise of legislative discretion are formulated by
the ‘doctrine of legal goods’ (Rechtsgutslehre), advanced by many German criminal law scholars27
but expressly rejected by the Bundesverfassungsgericht.28 According to the doctrine, which has its
roots in liberal criminal theory and shares many similarities with the ‘harm principle,’29 only
the protection of legal ‘goods’ (Rechtsgüter) may justify the use of the criminal law.There is no
consensus as to what precisely constitutes legal goods. Claus Roxin and Luís Greco, for example,
derive their concept from the criminal law’s purpose and define legal goods as ‘given conditions,
or purposes which are necessary for the free development of individuals, the realisation of their
fundamental rights, or the functioning of the state based on these goals.’30 Despite the doctrine’s
conceptual vagueness (in which it does not differ greatly from the principle of constitutional
proportionality), its main function is a negative and a critical one by identifying areas of over-
criminalisation. For example, the concept’s proponents share their opposition to ‘legal moral-
ism’ and the passing of offences for mere symbolic reasons. Judged by these criteria, § 217 is an
evident example of overcriminalisation, as we shall see below.
Indeed, this was also the Bundesverfassungsgericht’s conclusion. Why did the court decide to
take the historically bold step to annul § 217 this time, thereby approximating the spurned ‘doc-
trine of legal goods’? The court justified the comparatively high degree of scrutiny it subjected
the legislator’s discretion to with the fact that the offence interfered with a fundamental right of
‘existential importance’ – the right to a self-determined death it had just created.31 This ration-
ale is convincing from a liberal perspective on criminal law which, like the ‘doctrine of legal
goods,’ puts the individual and human dignity at the centre. Importantly, it is not limited to the
criminalisation of assisted suicides. Precisely those offences that protect ‘moral values’ encroach

25 BVerfGE 120, 224.

26 BVerfGE 120, 224, marginal numbers 73ff.
27 E.g. Winfried Hassemer, ‘Grundlinien einer personalen Rechtsgutslehre’ in Arthur Kaufmann, Lothar Philipps
and Heinrich Scholler (eds), Jenseits des Funktionalismus: Arthur Kaufmann zum 65. Geburtstag (Decker & Müller
1989); Roxin and Greco (n 22) 26.
28 BVerfGE 120, 227.
29 Cf Andrew von Hirsch, ‘Der Rechtsgutsbegriff und das “Harm Principle”’ in Roland Hefendehl, Andrew
von Hirsch and Wolfgang Wohlers (eds), Die Rechtsgutstheorie: Legitimationsbasis des Strafrechts oder dogmatisches
Glasperlenspiel? (Nomos 2003); Winfried Hassemer, ‘The Harm Principle and the Protection of “Legal Goods”
(Rechtsgüterschutz): A German Perspective’ in AP Simester and others (eds), Liberal Criminal Theory: Essays for
Andreas von Hirsch (Hart Publishing 2014).
30 Roxin and Greco (n 22) 26; translation by Tatjana Hörnle, ‘Theories of Criminalization’ in Markus D Dubber
and Tatjana Hörnle (eds), The Oxford Handbook of Criminal Law (Oxford University Press 2014) 687.
31 BVerfG NJW 2020, 905, marginal number 266; as opposed to the more general rights to freedom of action, free-
dom of movement, and the right not be sanctioned, which are affected by any kind of criminalisation.

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 Autonomy and the right to (end one’s?) life

on different facets of the right of personality (e.g. sexual autonomy), and therefore deserve closer
scrutiny than was previously the case.32

Legitimate objective of § 217

The Bundesverfassungsgericht first stated that the protection of autonomy at the end of life con-
stituted a legitimate governmental objective for introducing § 217.33 The court confirmed that the
legislator reasonably assessed the dangers to autonomy emanating from unrestricted access to
organised assistance with suicide. It highlighted the risk of unrecognised mental disorders and
the dangers arising from insufficient information and advice provided to suicidal persons.The
court also accepted the legislature’s worry of a social normalisation of AS and corresponding
social pressures to be sufficiently well founded. It based this assessment on two main points: first,
it referred to the experiences in the Netherlands and the US state of Oregon, where AS has
become ‘entrenched in the care and health systems’ – systems which are subjected to increasing
cost pressures. It highlighted the example of Oregon, where participation in the Death with
Dignity Act is fully reimbursed by health insurance whereas certain therapy methods for the
terminally ill are not. Second, the court mentioned research on the motivation of end-of-life
decisions, according to which a common motive is the wish not to be a burden to relatives.The
court argued that these aspects together raise substantial concerns that elderly individuals could
be induced to end their life prematurely. An evaluation of the matter is offered in the section
titled ‘The empirical slippery slope argument.’

Suitability and necessity

Further, the court argued that, as a criminal provision, § 217 was a suitable instrument for the
protection of legal goods.34 Subsequently, it normally determines whether the chosen form of
intervention is necessary to fulfil its purpose – in the present context whether or not there were
no less intrusive, but equally effective means available to protect the autonomy of end-of-life
decisions.This aspect, in criminal law literature often discussed as the ‘principle of subsidiarity,’35
is closely connected to the idea of the criminal law as an ultima ratio. Criminal law should only
be applied if the legal goods in question cannot be protected effectively by other branches of
the law, e.g. by administrative provisions. In the realm of organised AS, non-criminal legislative
alternatives to protect autonomy are readily conceivable. It is not surprising, therefore, that the
Bundesverfassungsgericht indicated doubts as to the necessity of § 217. Ultimately, however, it left
the question open and turned directly to the offence’s adequacy.36

Adequacy
The proportionality test’s last step, adequacy, requires that the state measure’s adverse effects
are not disproportionate in relation to its benefits.37 In weighing the restriction of the right to a
self-determined death resulting from § 217 against its (supposed) benefits for the protection of

32 Cf BVerfGE 120, 227, Dissenting Opinion of Justice Hassemer, marginal number 128.
33 BVerfG NJW 2020, 905, marginal numbers 227–59.
34 BVerfG NJW 2020, 905, marginal numbers 260–62.
35 E.g. Roxin and Greco (n 22) 86–90.
36 BVerfG NJW 2020, 905, marginal number 263.
37 Grzeszick (n 20) marginal number 117.

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 Carsten Momsen and Mathis Schwarze

autonomy, the court found the offence to be disproportionate.While the high rank of the legal
goods ‘autonomy’ and ‘life’ could legitimise the use of criminal law in principle, its legitimate use
reaches a limit where free choice is no longer protected but made impossible, the court argued.
Factually, due to the offence’s existence there was no guarantee that suicidal individuals would
still have access to assistance with suicide. In the absence of ‘right-to-die organisations,’ patients
were dependent on the willingness of individual physicians to assist with a suicide, at the very
least in the prescription of the necessary substances. Realistically, however, physicians’ willing-
ness could only be expected in exceptional circumstances. Therefore, the right to suicide as a
manifestation of the right to a self-determined death was de facto voided – it left no room for the
individual to exercise his or her constitutionally protected freedom.

Revisiting the debate preceding the introduction of § 217

The Bundesverfassungsgericht’s ruling is a salutary development, which underlines the paramount
importance of autonomy. In the form § 217 was passed, the legislator turned the protection
of autonomy into its opposite. Its aim to set a high threshold for professional assistance with
suicide was perfectly legitimate. Few will disagree that there are dangers to the autonomy of
end-of-life decisions. However, the blanket criminalisation of all ‘business-like’ assistance with
suicide was not a suitable solution to these issues.The remaining sections of this chapter contain
a short overview on the ethical and legal debate that preceded the criminalisation of organised
assistance with suicide and a critical analysis of its most common arguments.

The ‘slippery slope’ argument

As stated above, the main argument for introducing § 217 was to counteract a ‘social normalisa-
tion’ and ‘acceptance’ of AS which would potentially result in ‘social pressures’ to complete sui-
cide. Moreover, it was feared that tolerating the work conducted by ‘right-to-die organisations’
would set a dangerous precedent in other issues, such as assistance with the suicides of children
and disabled persons, and euthanasia.38 This line of reasoning amounts to the ‘slippery slope’ (or
in German: Dammbruch39) argument.As Douglas Walton described this type of argument:

A slippery slope argument is a kind of argument that warns you if you take a first step,
you will find yourself involved in a sticky sequence of consequences from which you
will be unable to extricate yourself, and eventually you will wind up speeding faster
and faster towards some disastrous outcome.40

The argument is common in the medico-ethical debate, particularly on issues such as abor-
tion, assistance with suicide, euthanasia, and pre-natal diagnostics. In the parliamentary debate
preceding the introduction of § 217, 21 of 67 speeches given by MPs contained one or more
versions of a slippery slope argument.41 They all have in common the warning that the unregu-

38 E.g. Michael Friesner MP:‘Now we speak of assisted suicide. But at some point, when assisted suicide becomes
the norm, the doctor will have to go from being an assistant to being the perpetrator’ (parliamentary protocol
18/66 [2014] – our translation).
39 Meaning the ‘bursting of a dam.’
40 Douglas Walton, Slippery Slope Arguments (Oxford University Press 1992) 1.
41 Lukas Rhiel,‘Das Dammbruch- oder Slippery-Slope-Argument in der Debatte zur Sterbehilfe’ (2015) vorgänge
163, 165.

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 Autonomy and the right to (end one’s?) life

lated offer of organised assistance with suicide would compromise autonomy. Frequently, the
selection between ‘worthy’ and ‘unworthy’ lives is described as the final outcome in an unstop-
pable sequence of ever worsening consequences, and a parallel is drawn to the horrors of the
Nazi regime.42 Even in the current debate,Wolfgang Thierse, a former president of the German
parliament, was so outraged by the Bundesverfassungsgericht’s ruling of February 2020 that he
compared the judges involved to the Nazi judiciary.43 An exemplary argument could go as fol-
lows: Once assistance with suicide is legalised,

it becomes very easy to recommend euthanasia for mentally retarded persons, or any-
one who requires inconvenient or costly treatment or support. Now we all know from
the experience of Nazi Germany, it is a short step from there to elimination of any
‘socially undesirable’, i.e. politically dissident persons.44

The official justification given for the passing of § 217 did not go quite as far, yet moved in a
similar direction.The notion of ‘social pressures’ implies a danger that end-of-life decisions will
no longer be made by the individual but by third parties according to their measures of what
constitutes a ‘worthy’ life. Is this a legitimate worry that justifies the use of the criminal law?

The sorites slippery slope argument45

One of the problems with the ‘slippery slope’ type of argument is that it exploits the vague-
ness of the terms used.When exactly can we speak of a ‘social normalisation’ of suicides? How
is ‘autonomy’ defined? At which point do the ‘social pressures’ become so strong that one can
safely say that personal autonomy is impaired or suspended? Leaving these questions open
clouds the view in determining the merits of the actual argument. For example, if ‘normalisa-
tion’ were simply to be defined as a reduction of suicide stigma in the community, this would
warrant a more differentiated view than suggested by lawmakers. Stigma can have a preventive
function against suicide (serving the sociological functions of ‘norm enforcement’ and ‘disease
avoidance’46). But for acutely suicidal persons, stigma can also serve as a barrier against seeking
help,47 and ‘suicide can appear to be the best solution for a stigmatised individual.’48

The empirical slippery slope argument49

Moreover, insofar as the ‘slippery slope’ type of argument implies a causal effect (‘domino the-
ory’), it is dependent on empirical evidence to back up the postulated causal chain.The threat
of a ‘social normalisation’ of suicides was substantiated with reference to the rising numbers of

42 Edward W Keyserlingk, Sanctity of Life: Or, Quality of Life in the Context of Ethics, Medicine, and Law:A Study (Law
Reform Commission of Canada 1979) 23; Dagmar Fenner, ‘Ist die Institutionalisierung und Legalisierung der
Suizidbeihilfe gefährlich?: Eine kritische Analyse der Gegenargumente’ (2007) 19 Ethik in der Medizin 200, 204.
43 Wolfgang Thierse,‘Die ethischen Grundfeste erschüttert’ Frankfurter Allgemeine Zeitung (29 February 2020).
44 Walton (n 40) 161–62.
45 On this type of argument, see ibid 37, 160.
46 Jo Phelan, Bruce G Link and John F Dovidio, ‘Stigma and Prejudice: One Animal or Two?’ (2008) 67 Social
Science & Medicine 358.
47 N Oexle, L Mayer and N Rüsch,‘Suizidstigma und Suizidprävention’ (2020) 91 Nervenarzt 779.
48 M Pompili, I Mancinelli and R Tatarelli, ‘Stigma as a Cause of Suicide’ (2003) 183 The British Journal of
Psychiatry 173.
49 Walton (n 40) 69ff.

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 Carsten Momsen and Mathis Schwarze

AS in Switzerland, Belgium, and the Netherlands (and the platitude ‘supply creates demand’).50
Apart from the question as to what extent these numbers were in fact attributable to foreigners,51
the usefulness of this measure is questionable. It is likely that suicides assisted by ‘right-to-die
organisations’ simply replaced suicides which would have been carried out anyway (and by
less safe methods). Thus, a more relevant measure seems to be the overall suicide rate, which
decreased or remained relatively stable in these jurisdictions over the last decades.52
In fact, there are indications that the existence of (responsibly acting) ‘right-to-die organisa-
tions’ or individuals offering assistance with suicide can have a preventive effect against suicide.
The Swiss organisation Dignitas reports that a considerable quota – 86% – of the individuals
applying for assistance with suicide never come through with their initial request after receiving
the provisional ‘green light,’ and that only 3% of their members eventually use assistance with
suicide.53 Similarly, an individual ‘professionally’ conducting assistance with suicide since 2005
reported that in six out of seven cases, his job consisted of providing ‘life support.’54 It is possible
that the mere knowledge of having access to a dignified way of dying can have a relieving effect
on concerned individuals – a mechanism, however, that requires further research. Irrespective of
this, keeping the number of suicides low should not be an end in itself. In view of the right to
a self-determined death, the yardstick should be to uphold personal autonomy as well as pos-
sible – while at the same time protecting the right to life of individuals incapable of making
end-of-life decisions.55
What about the points accepted by the Bundesverfassungsgericht to substantiate the legislator’s
concerns? The reference to the common wish not to be a burden to relatives56 implies the (false)
suspicion that end-of-life decisions with altruistic motives cannot be autonomous.This would
amount to a very narrow understanding of autonomy according to which only very specific rea-
sons for end-of-life decisions (e.g. terminal illness, severe suffering) are acceptable. However, the
principle of ‘self-determination’ also extends to the motives for end-of-life decisions.The sec-
ond point, which concerned cost pressures in the care and health systems in foreign countries,57
is not representative of the situation in Germany where universal health insurance is in place.
More importantly, however, it is not convincing as a justification for criminalisation, but should
rather be understood as a call for appropriate reforms in health legislation.

The precedent slippery slope argument58

Lastly, when opponents express their fear that tolerating organised AS would set a dangerous
precedent in other issues, they often fail to provide an explanation of why this would be so
wrong.The court’s ruling will indeed have consequences beyond the ‘standard case’ of compe-

50 Speech of Michael Brand MP (parliamentary protocol 18/66 [2014] 6117 B).

51 Cf BVerfG NJW 2020, 905, marginal number 255.
52 Between 1995 and 2009, the rate decreased by 10.3, 12.4, and 18.3% in the Netherlands, Belgium, and
Switzerland, respectively, see OECD, ‘Health at a Glance’ (2011) 35 www.oecd.org/dataoecd/6/28/49105858
.pdf accessed 11 October 2020.
53 Dignitas,‘Klinik Schönberg: Skript in Ergänzung zu Referat und Fragerunde’ (18 May 2020) www.dignitas.ch/
images/stories/pdf/diginpublic/referat-klinik-schoenberg-18052020.pdf accessed 11 October 2020.
54 Claudia Krieg,‘Interview mit dem Sterbebegleiter Peter Puppe’ (2015) vorgänge 201.
55 Ulfrid Neumann,‘Autonomie durch Heteronomie? Kategoriale Ver(w)irrungen im aktuellen Medizinstrafrecht’
(2017) Zeitschrift für Medizinstrafrecht 141, 145.
56 E.g. speech of Kerstin Griese MP (parliamentary protocol 18/66 [2014] 6134 C–D).
57 E.g. speech of Hubert Hüppe MP (parliamentary protocol 18/66 [2014] 6132 D).
58 Walton (n 40) 115.

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 Autonomy and the right to (end one’s?) life

tent adults.As a universal right, the right to a self-determined death applies to everyone, includ-
ing minors and disabled people. Of course, determining the maturity and legal competence
necessary for end-of-life decisions is a particularly difficult task within these groups of individu-
als. However, these difficulties should not be taken as a reason for generally excluding them from
access to AS – this would amount to that same flawed line of reasoning originally advanced in
favour of the introduction of § 217.
Moreover, the nature of the right to a self-determined death as a universal right (i.e. that
of being open to everyone) also means that the court’s ruling could have consequences for
euthanasia. As opposed to assistance with suicide, euthanasia is currently a criminal offence
in Germany (Tötung auf Verlangen, § 216, punishable by up to five years imprisonment). One
explanation offered for this distinction is that, from a soft paternalistic standpoint, only a suicide
sufficiently proves the presence of an autonomous will to die. In the case of euthanasia, on the
other hand, it cannot be ruled out afterwards whether the suicidal person had been persuaded
to demand an act she or he would not have performed herself or himself.59 Regardless of how
convincing this distinction really is, the scope of § 216 must be re-evaluated in light of the right
to a self-determined death.While most people can realise their constitutional right by complet-
ing suicide (possibly supported by a ‘right-to-die organisation’), there are some individuals who
are physically unable to perform the fatal act themselves. For this limited group of people, the
prohibition of active euthanasia violates the constitutional right to a self-determined death and
is likely unconstitutional.60

Autonomy and human dignity: A right to die or a duty to live?

Related to the ‘slippery slope’ argument is the argument from human dignity.Tolerating (assis-
tance with) suicide is incompatible, argue the critics, with the holy or absolute nature of human
dignity.This view has religious as well as philosophical foundations: the three revealed religions
argue that life is God’s gift and property; therefore, humans are not permitted to dispose of it.61
From a Christian view of humankind, the ‘commandment of love’ demands the protection of
all human life – ‘if necessary even from harm caused by the person herself.’62 A similar strand
of thinking can be found in philosophy. Pioneered by Aristotle who rejected (some forms of)
suicide as an injustice to the polis, the thought was taken up again by German enlightenment
philosophers such as Samuel Pufendorf63 and Immanuel Kant.64 Kant saw suicide as a viola-
tion of the moral duty to preserve oneself and as an attack on the dignity we possess as rational
beings. Further, as autonomy and rationality are inherently human, he believed using a rational

59 Claus Roxin, ‘Tötung auf Verlangen und Suizidteilnahme. Geltendes Recht und Reformdiskussion’ (2013)
Goltdammer’s Archiv für Strafrecht 313.
60 E.g. Josef F Lindner, ‘Verfassungswidrigkeit des Verbotes aktiver Sterbehilfe?’ (2020) Neue Zeitschrift für
Strafrecht 505, who proposes the insertion of an exception in § 216 for legally competent individuals who are
unable to perform the fatal act themselves.
61 Hartmut Kreß, ‘Suizid und Suizidbeihilfe in existenzieller, religiöser und kultureller Hinsicht’ in Ferdinand von
Schirach, GOTT. Ein Theaterstück (Luchterhand 2020) 123.
62 Rolf Dietrich Herzberg, Die Unterlassung im Strafrecht und das Garantenprinzip (de Gruyter 1972) 266.
63 Samuel von Pufendorf, De jure naturae et gentium libri octo (Sumptibus Friderici Knochii 1684) book 2, chapter 4,
§ 19.
64 Immanuel Kant, Die Metaphysik der Sitten (Friedrich Nicolovius 1797) part II, § 6.

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 Carsten Momsen and Mathis Schwarze

choice to terminate one’s existence – thus terminating rationality and autonomy – would be
self-contradictory.65
When autonomy becomes normatively charged in this way, the decision to die can never be
autonomous – autonomy and decisions against life are mutually exclusive.This would amount
to a total rejection of a ‘right to die’ and, consequently, the establishment of a ‘duty to live.’66 But
to whom should this duty apply? In a liberal, pluralistic society, neither god nor the state itself
has the authority to impose moral values on the individual.This is particularly true considering
the fact that in 2020, over two-thirds of the German population agreed that doctors should be
allowed to provide assistance with suicide, and 81% agreed at least with respect to terminally ill
patients.67 Therefore, a moral ‘duty to live’ has no backing in society.
Irrespective of this, human dignity should not be used as a smokescreen for justifying legal
moralism. The human dignity argument is a knockout one because every violation of human
dignity is unconstitutional.68 To avoid a dilution of human dignity, the concept’s very core as
a defensive guarantee against degradation by the state ought to be strictly distinguished from a
culturally and morally charged view of humankind. Furthermore, it must be acknowledged that
life and autonomy are closely related facets of human dignity, and there is no hierarchy between
them.Therefore, as the Bundesverfassungsgericht rightly notes, the ‘protection of life at the cost of
autonomy contradicts the self-understanding of a community in which human dignity is the
central value.’69

The danger of conficts of interest

Another argument in the explanatory memorandum of § 217 was to counteract potential con-
flicts of interests. The memorandum stated that even non-profit ‘right-to-die organisations’
would take great interest in ‘providing services as frequently and effectively as possible.’70 This
premise alone is questionable – organisations such as Dignitas emphasise that their primary
purpose is ‘counselling in respect to questions on the end of life and in difficult life situations,’71
and not to perform as many assisted suicides as possible. It is likely that there is a lower chance
that assistance with suicide conducted by a ‘right-to-die organisation’ is subject to conflicts of
interest than if performed by a relative, in which case complex emotional and personal issues
might play a role.
This is not to say that conflicts of interest, particularly of a financial nature, are completely
negligible. One approach to this awareness could be the introduction of a specific offence that
criminalises ‘selfish’ forms of assistance with suicide – similar to the framework in Switzerland.
Article 115 of the Swiss penal code reads:

65 ibid; Neumann, ‘Autonomie durch Heteronomie? Kategoriale Ver(w)irrungen im aktuellen Medizinstrafrecht’

(n 55) 143.
66 Michael Köhler,‘Die Rechtspflicht gegen sich selbst’ (2006) 14 Jahrbuch für Recht und Ethik 425.
67 Ulrich Neumann, ‘Umfrage: Mehrheit befürwortet ärztliche Sterbehilfe’ tagesschau.de (25 May 2020) www.tagess
chau.de/investigativ/report-mainz/sterbehilfe-197.html accessed 11 October 2020.
68 Eric Hilgendorf, ‘Die missbrauchte Menschenwürde – Probleme des Menschenwürdetopos am Beispiel der
bioethischen Diskussion’ (1999) 7 Jahrbuch für Recht und Ethik 137, 157.
69 BVerfG NJW 2020, 905, marginal number 277.
70 BT-Drs. 18/5373, 11.
71 Dignitas, ‘Was bietet DIGNITAS’ www.dignitas.ch/index.php?option=com_content&view=article&id=6
&Itemid=47&lang=de accessed 11 October 2020; Christian Rath, ‘Dignitas-Chef übers Sterben: “Gute Arbeit
soll bezahlt werden”’ Die Tageszeitung: taz (16 August 2012) https://taz.de/!5086327/ accessed 11 October 2020.

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 Autonomy and the right to (end one’s?) life

Any person who for selfish motives incites or assists another to commit or attempt to
commit suicide is, if that other person thereafter commits or attempts to commit sui-
cide, liable to a custodial sentence not exceeding five years or to a monetary penalty.72

Other proposals along these lines include the criminalisation of assistance with suicide for rea-
sons of ‘greed’73 or the ‘exploitation of a predicament for the purpose of enrichment.’74 Such a
narrowly tailored offence would certainly be preferable to the blanket criminalisation of organ-
ised AS. However, it will be difficult to define a reasonable threshold for the relevant criterion.
For example, the offence should not cover well-trained helpers such as doctors merely on the
grounds that these persons (partly) earn their living from providing AS.The more serious danger,
however, is the possibility that anyone who was in a position to take advantage of the suicidal
person’s death – particularly potential heirs and legatees – could face the risk of prosecution.
However, these persons in particular tend to enjoy the suicidal person’s special trust. To place
relatives or close friends under a general suspicion of ‘greediness’ would potentially discourage
them from taking part in AS and thus compromise the right to a self-determined death.
From a strict autonomy-oriented perspective, such an offence is not even necessary. The
most ethically reprehensible cases of conflicts of interest concern assistance with the suicide of
incompetent individuals for selfish reasons or on grounds of self-enrichment. This, however, is
already a punishable offence under current (and long-standing) German law. On the other hand,
the presence of a conflict of interest does not change the validity of the assistance provided for
a legally competent adult.Therefore, conflicts of interest have no direct bearing on the legal good
‘autonomy.’

The role of undiagnosed and diagnosed mental disorders

The impunity of assistance with suicide is based on the premise that suicides are (or at least: can
be) voluntary (volenti non fit iniuria).This ‘voluntary suicide’ hypothesis is embodied in the work
of Jean Améry:

Those who leap have not necessarily fallen into delusion, they are not even ‘disturbed’
or ‘deranged’ in all circumstances.The inclination to voluntary death is not a sickness
of which one has to be cured as one is cured of measles.75

However, a central argument advanced against the legitimacy of assistance with suicide is that
‘voluntary’ or ‘free’ suicides do not actually exist (or are very rare).76 Particularly problematic is
the fact that suicidality is a symptom of certain psychological disorders (such as the major depres-
sion disorder, F 32.2 ICD-10). This prompts the circular argument: ‘the deceased was suicidal;
thus, the suicide was pathological.’

72 English translation available at www.admin.ch/opc/en/classified-compilation/19370083/202007010000/311.0

.pdf accessed 11 October 2020.
73 Heinz Schöch and Torsten Verrel, ‘Alternativ-Entwurf Sterbebegleitung (AE-StB) mit dem Entwurf eines
Sterbebegleitungsgesetzes’ (2005) Goltdammer’s Archiv für Strafrecht 553, 581–82.
74 Ulrich Schroth,‘Sterbehilfe als strafrechtliches Problem’ (2006) Goltdammer’s Archiv für Strafrecht 549, 570.
75 Jean Améry, On Suicide:A Discourse on Voluntary Death (Indiana University Press 1999) 30.
76 Gerd Geilen,‘Suizid und Mitverantwortung’ (1974) 29 Juristenzeitung 145, 148; Peter Bringewat,‘Die Strafbarkeit
der Beteiligung an fremder Selbsttötung als Grenzproblem der Strafrechtsdogmatik’ (1975) 87 Zeitschrift für die
gesamte Strafrechtswissenschaft 623, 632–33; Magnus (n 5) 441.

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 Carsten Momsen and Mathis Schwarze

Modern psychological research paints a more differentiated picture, but still estimates that
90–95% of individuals who completed suicide suffered from psychological disorders.77 In abso-
lute numbers, affective disorders are the most common cause for suicides, causing an estimated
40–60% of all suicides.78 A large proportion of suicidal thoughts are only of a temporary nature,
and suicide attempts are often intended as a ‘cry for help.’79 This can partly be explained by
the episodic pattern of affective disorders. A particular danger in the context of assistance with
suicide is, however, that psychological disorders remain completely undiagnosed. What can be
concluded from these findings?
First, that a demonstrable – albeit small – portion of suicides that can safely be classified as
‘voluntary’ actually exists. Second, the necessity to closely scrutinise end-of-life decisions from
a medical and psychiatric standpoint. Appropriate regulatory mechanisms to ensure the auton-
omy and permanence of end-of-life decisions should be put in place, rather than the blanket
criminalisation of ‘business-like’ AS.Third, the assumption that the presence of a psychological
disorder is tantamount to the absence of autonomy is false.The broad concept of mental illness
adopted by the ICD-1080 as well as the fluid borders between a ‘rational’ reaction to acute life
crises and pathological disorders warrants a differentiated view. If the psychological disorder
does not impair cognition (as do psychoses), the main indicator for an autonomous end-of-life
decision should be the decision’s permanence, which can be the case particularly in patients
resistant to psychiatric treatment. It must be recognised that suffering from chronic psychiatric
disorders can be equally severe as suffering from serious physical illness; thus, a form of rational-
ity can be seen in those patients’ desire to die.

Conclusion and outlook

The annulment of § 217 is a positive and historically unprecedented development.The offence
was not suitable to protect autonomy. The arguments advanced in the legislative process do
not survive empirical scrutiny, rendering § 217 a ‘symbolic’ offence and thus an example of
overcriminalisation. The offence gave the Bundesverfassungsgericht the opportunity, however, to
develop the new constitutional right to a self-determined death, which strengthens autonomy
in end-of-life decisions. The court’s ruling has had immediate practical implications – ‘right-
to-die organisations’ can take up their work and suicidal persons can avail themselves of their
services again.Thereby, the ruling provides a realistic and legal perspective for every competent
individual wanting to end his or her life in a humane way.
Apart from this direct effect, the court’s decision has rekindled public debate on important
questions concerning the end of life, questions which might affect all of us at some point. A
successful German writer even authored a play in which he lets his viewers vote on the ethical
permissibility of AS.81 The public debate might indeed have contributed to a normalisation of
suicides, but in a positive, destigmatising way. From an academic point of view, the court’s ruling

77 Clemens Cording and Henning Saß, ‘Die Freiverantwortlichkeit der Entscheidung für einen assistierten Suizid’
(2020) Neue Juristische Wochenschrift 2695.
78 Georg Fiedler and Hannah Müller-Pein, ‘Suizidalität – die Dimension eines Phänomens’ (2020) 36 Forum der
Psychoanalyse 141; M Wolfersdorf,‘Suizidalität’ (2008) 79 Der Nervenarzt 1319.
79 Geilen (n 76) 148.
80 The ICD-10 also covers ‘non-pathological’ crises such as the ‘acute stress reaction’ (F 43.0), the ‘posttraumatic
stress disorder’ (F 43.1), and ‘adjustment disorders’ (F 43.2) – reactions to exceptional psychological stress that
would cause despair in almost anyone, see Fenner (n 2) 264–65.
81 Ferdinand von Schirach, GOTT. Ein Theaterstück (Luchterhand 2020).

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 Autonomy and the right to (end one’s?) life

is intriguing because of its historically unprecedented intervention in the legislator’s discretion

in passing criminal law. The ruling will once again ignite debate on the limits of the criminal
law. Moreover, it will give rise to hopes that other potentially superfluous offences will undergo
the same scrutiny, and that this ruling was a first step towards incorporating the ‘doctrine of legal
goods’ into the court’s jurisprudence.
Now, the ball is back in the legislator’s court.As a response to the ruling, the legislator should
set up a framework for a responsible AS practice. After all, the state does have a duty to protect
the ‘fragile’ autonomy and the life of suicidal citizens. However, the legislator will have to make
sure to leave sufficient room for the right to a self-determined death in any new attempt to
regulate organised AS.The Bundesverfassungsgericht itself listed various potential regulatory mech-
anisms: a legal duty to provide information and counselling and an obligatory waiting period
– a concept comparable to the regulations on abortion; licensing requirements that ensure the
reliability of ‘right-to-die organisations;’ and prohibitions of ‘particularly dangerous’ forms of
suicide assistance (such as ‘selfish’ or ‘greedy’ behaviour, see above). Considering the fact that, as
the court itself stated, there is as yet little empirical knowledge on the different approaches to
AS and the field of suicide assistance in general, the legislative process should be informed by a
balanced panel of experts including representatives of ‘right-to-die organisations.’
However, not only on the legislative front is there a need for action. A key aspect of any
autonomy-oriented regulatory framework will be to ensure that the psychological competence
of suicidal individuals and the permanence of their end-of-life decision are professionally evalu-
ated. Doctors (particularly psychiatrists) are indispensable in performing these tasks, and it must
be ensured that they can do so legally. As of yet, most of the state medical associations’ profes-
sional codes prohibit or discourage every ‘participation’ in a suicide.An important step in imple-
menting the new ruling will therefore be for the medical associations to revise their standards.
The president of the German Federal Medical Association has already signalled his intention to
move in this direction.82
Returning to the question raised at the beginning of this chapter, it can be concluded that
‘right-to-die organisations’ assume an important task in upholding self-determination at the
end of life, and there is no evidence that their sheer existence has adverse effects on autonomy.
Therefore, § 217 was a misguided and dispensable offence, and the Bundesverfassungsgericht’s rul-
ing constitutes a positive development in several respects. However, it can only be a first step in
the process towards finding a responsible and balanced societal approach to dealing with the end
of life, and many issues remain to be discussed.

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82 Cornelia Schmergal, ‘Ärzteverbände wollen Verbot der Suizidbeihilfe kippen’ DER SPIEGEL (29 September
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der Psychoanalyse 141.
Wolfersdorf, M,‘Suizidalität’ (2008) 79 Der Nervenarzt 1319.
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Hassemer,Winfried,‘Grundlinien einer personalen Rechtsgutslehre’ in Arthur Kaufmann, Lothar Philipps
and Heinrich Scholler (eds), Jenseits des Funktionalismus: Arthur Kaufmann zum 65. Geburtstag (Decker
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von Schirach (ed), GOTT. Ein Theaterstück (Luchterhand 2020).
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Strafrecht 505.
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Social Science & Medicine 358.
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vorgänge 163.
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 20
VOLUNTARY ASSISTED DYING
LAW REFORM IN AUSTRALIA
AND NEW ZEALAND
Ian Freckelton

Introduction
A distinctive jurisprudence and reforms to the common law have developed in Australia and
New Zealand on end-of-life issues. Until the Voluntary Assisted Dying Act 2017 (Vic), the
Voluntary Assisted Dying Act 2019 (WA), and the End of Life Choice Act 2019 (NZ), the focus
of legal analyses and courts’ decision-making in both countries was on entitlements to with-
hold and withdraw treatment from persons desirous of bringing their life to an end.1 Inevitably,
this took place against the backdrop of the broader community debate about physician-assisted
suicide and euthanasia.2
No global or human rights treaties explicitly identify a ‘right to die.’ However, debates in
relation to euthanasia issues emanate from community, as well as bioethical debates about enti-
tlements to autonomy of decision-making by persons with serious illnesses; human dignity,
including the dignity of choice;3 and respect for the wishes of persons who are ill or dying. In
addition, they clearly engage a number of well-recognised human rights, including the right
to life (ICCPR, Article 6), the right to freedom from torture, cruel, inhuman, and degrading
treatment (ICCPR, Article 7), and the right to respect for private life (ICCPR, Article 17) as
well as, arguably, the right to the enjoyment of the highest attainable standard of physical and
mental health (ICESR, Article 12). However, in many authoritative human rights decisions by

1 See e.g. B White, L Willmott, E Close and J Downie, ‘Withholding and Withdrawing Potentially Life-Sustaining
Treatment: Who Should Decide?’ in I Freckelton and K Petersen (eds), Tensions and Traumas in Health Law
(Federation Press 2017), 454–478; B White et al.,‘The Role of Law in Decisions to Withhold and Withdraw Life-
Sustaining Treatment from Adults Who Lack Capacity: A Cross-Sectional Study’ (2016) 43 Journal of Medical
Ethics 327; I Freckelton,‘Patients’ Decisions to Die:The Emerging Australian Jurisprudence’ (2011) 18 Journal of
Law and Medicine 427; L Bartels and M Otlowski,‘A Right to Die? Euthanasia in Australia’ (2010) 17 Journal of
Law and Medicine 532; M Otlowski, Voluntary Euthanasia and the Common Law (Clarendon Press 1997).
2 See e.g. R Syme, ‘Necessity to Palliate Pain and Suffering as a Defence to Medical Homicide’ (2009) 17 Journal
of Law and Medicine 439.
3 See C Bauer,‘Dignity in Choice: A Terminally Ill Patient’s Right to Choose’ (2018) 44(3) Mitchell Hamline Law
Review 1025; S Nalley,‘Euthanasia – The Right to Choose’ (2003) 1 Essai Article 28.

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 Voluntary assisted dying law reform

courts, the ‘right to die’ has not been acknowledged. In Pretty v The United Kingdom,4 for instance,
the European Court of Human Rights held that the right to life does not equate to a right to
die ‘nor can it create a right to self-determination in the sense of conferring on an individual
the entitlement to choose death rather than life.’ By contrast, in the internationally influential
judgement of Carter v Canada,5 the Supreme Court of Canada concluded that:‘The prohibition
on physician-assisted dying infringes the right to life, liberty and security of the person in a
manner that is not in accordance with the principles of fundamental justice.’ However, in many
countries, including Australia and New Zealand, the ultimate decision on the lawfulness and the
ethics of physician-assisted suicide has been regarded as so fundamental a community issue that
it has been left to the legislature.
The emergent (and ongoing) efforts directed towards law reform in relation to voluntary
euthanasia (VE) have generated a new generation of debate about the human rights issues
involved in enabling patients themselves and on occasion through their health practitioners to
exercise active choice as to the timing and circumstances of their death.
This chapter reviews the legislative developments in Australia and New Zealand and the con-
troversies that have been generated in these countries by law reform initiatives in relation to dying
with dignity. The issues traversed include whether the legislative enactments have not gone far
enough in alleviating suffering and giving patients autonomy, and whether they have gone too far
in compromising doctor–patient relationships, protecting the beneficent culture of medicine, and
ensuring that end-of-life decision-making involving health practitioners is sufficiently accountable.

The Northern Territory initiative

Attempts at euthanasia law reform in Australia are conventionally dated from 1995, the year of the
Rights of the Terminally Ill Act 1995 (NT), although the first voluntary euthanasia bill that was
introduced into an Australian parliament was the Voluntary and Natural Death Bill 1993 (ACT).
The 1995 legislation has particular historical significance because the Northern Territory
was the first jurisdiction in the world to have operative legislation enabling voluntary assisted
dying (VAD). It permitted a doctor to comply with a request from a terminally ill, competent
adult patient to receive assistance to end their life (section 4) where, among other things, the
patient was experiencing ‘pain, suffering and/or distress to an extent unacceptable to the patient’
(section 4) and there were no palliative care options to alleviate this to a level acceptable to the
patient. A psychiatrist had to confirm the patient was not suffering from a ‘treatable clinical
depression,’ the patient had to have received information from a palliative care specialist, and
there were two ‘cooling-off ’ periods (section 7). However, from the outset the enactment was
extremely controversial,6 and it existed in an area of Australia with a high level of indigenous

4 App No 2346/02 (2002) 35 Eur HR Rep 1 at [39]. See S Milns,‘Death, Dignity and Discrimination:The Case of
Pretty v United Kingdom’ (2002) 3(10) German Law Journal E4.
5 [2015] 1 SCR 331 at [56].
6 See e.g. PE Mullen, ‘Euthanasia: An Impoverished Construction of Life and Death’ (1995) 3 Journal of Law and
Medicine 121; H Kuhse and P Singer, ‘Active Voluntary Euthanasia, Morality and the Law’ (1995) 3 Journal of
Law and Medicine 129; D Mendelson, ‘The Northern Territory’s Euthanasia Legislation in Historical perspec-
tive’ (1995) 3 Journal of Law and Medicine 136; G Gillett,‘Ethical Aspects of the Northern Territory Euthanasia
Legislation’ (1995) 3 Journal of Law and Medicine 145; M Ashby,‘Hard Cases, Causation and Care of the Dying’
(1995) 3 Journal of Law and Medicine 152; J Buchanan,‘Euthanasia:The Medical and Psychological Issues’ (1995)
3 Journal of Law and Medicine 161; D Ranson,‘The Coroner and the Rights of the Terminally Ill Act 1995 (NT)’
(1995) 3 Journal of Law and Medicine 19.

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 Ian Freckelton

population.7 A challenge to the legislation in the Northern Territory Supreme Court resulted in
a split decision (by a majority of two to one) to uphold the law.8
The Northern Territory Act functioned for literally a few weeks before it was overturned by
Commonwealth legislation, the Euthanasia Laws Act 1997 (Cth), an avenue that was open to the
federal government because of the status of the jurisdiction as only a territory of Australia, not a
state.The Northern Territory legislation was utilised on a small number of occasions.9
The principal points of contention in relation to the 1995 initiative were whether it was
workable, given the few psychiatrists available (generally on a fly-in, fly-out basis); whether it was
going to work adversely to the interests of Aboriginal people; whether it was compliant with
Australia’s human rights obligations;10 whether it failed to come to terms with the availability
and efficacy of palliative care services; whether persons who were mentally ill would be able to
take advantage of the option;11 whether it was appropriate for non-residents to avail themselves
of the legislation; whether it would place pressure on persons to use the option of voluntary
assisted dying; and whether it would erode the culture of care within the medical profession.
A high level of legislative activity has continued since that Commonwealth overturning of
the Northern Territory initiative, with over 50 bills for voluntary euthanasia being tabled in
Australian parliaments between 1995 and 2016.12 They have varied between voluntary eutha-
nasia bills, physician-assisted suicide legislation, and hybrid forms of legislation. A further series
of bills has been tabled from the beginning of 2016.While the bills can be divided among per-
missive, defence, and penalty mitigation models, the permissive bills were the most popular and
tended to have the following features:

1. Power: power is conferred on treating medical practitioners to administer VE to certain

eligible patients;
2. Immunity: immunity against civil, criminal, or disciplinary liability is conferred on any per-
sons assisting in the administration of VE in good faith;
3. Safeguards: protective procedures are generally prescribed to require competent requests, to
provide information, and to obtain psychiatric assessments; these and other safeguards are

7 See JI Fleming, ‘Death, Dying, and Euthanasia: Australia Versus the Northern Territory’ (2000) 15(3) Issues Law
Medicine 291; P Quirk,‘Euthanasia in the Commonwealth of Australia’ (1998) 13(4) Issues Law Medicine 425;
G Williams,‘Voluntary Euthanasia Legislation: Practicalities of the Northern Territory’s Rights of the Terminally
Ill Act of 1995’ (1996) 9(3) Australian Critical Care 92.
8 Christopher John Wake and Djiniyinni Gondarra v Northern Territory of Australia and The Honourable Keith John Austin
Asche AC,The Administrator of the Northern Territory of Australia, unreported, Full Court of the Supreme Court of
the Northern Territory (Martin CJ,Angel J and Mildren J), 24 July 1996.
9 See P Nitschke (with P Corris), Damned If I Do (Melbourne University Press 2013). The Commonwealth law
prevented the ACT, the NT and Norfolk Island from passing laws permitting euthanasia for 25 years but a lobby
has emerged to change this: see N Fuller, ‘ACT Should Have Right to Vote on Euthanasia Politicians Argue’
(5 March 2021) Canberra Weekly https://canberraweekly.com.au/act-should-have-right-to-vote-on-euthanasia-
politicians-argue/.
10 See G Zdenkowski, ‘Human Rights and Euthanasia’, Occasional Paper of the Australian Human Rights and
Equal Opportunity Commission (December 1996) www.humanrights.gov.au/sites/default/files/content/pdf/
human_rights/euthanasia.pdf
11 See C Ryan, ‘Australasian Psychiatry and Euthanasia: RANZCP Section of Consultation-Liaison Psychiatry's
Working Group on Euthanasia’ (1996) 4(6) Australasian Psychiatry 307.
12 See L Willmott, B White, C Stackpoole, K Purser and A McGee, ‘(Failed) Voluntary Euthanasia Law Reform in
Australia: Trends, Models and Politics’ (2016) 39(1) University of New South Wales Law Journal 1; Australian
Human Rights Commission, Euthanasia, Human Rights and the Law, Issues Paper, May 2016 https://humanrights.
gov.au/our-work/age-discrimination/publications/euthanasia-human-rights-and-law#fn122.

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 Voluntary assisted dying law reform

conditions precedent to exercising the relevant VE power or benefiting from the granted
legal and disciplinary immunity (the safeguards are discussed further below);
4. Conscientious objections: a conscientious objections clause enables medical practitioners and
institutions to decline to administer VE;
5. Avoidances: miscellaneous provisions to prevent contingency clauses in contracts, wills,
insurance, and annuities from adversely affecting the person’s entitlements on the basis of a
request for VE; and
6. Oversight: various mechanisms are established for systematic oversight of the regime, for
example a commission or committee that reviews deaths and/or reporting to parliament
about how the legislation is being used.

Some bills only operated if the patient suffered from a terminal illness, or even the ‘terminal
phase’ of a terminal illness, while others adopted a broader conceptualisation of the illnesses,
including, for example, incurable and other chronic illnesses.
The bills that have been tabled over more recent years have come close to passing the rel-
evant parliamentary chamber (or chambers) where they have been tabled and are indicative of
the level of ambivalence within the Australian community about the legislative initiatives.These
bills include the Victorian bill that ultimately became law; the Death with Dignity Bill 2016
(SA), which was defeated by one vote in the House of Assembly (with the Speaker’s casting vote
against the bill); and the Voluntary Assisted Dying Bill 2017 (NSW), which was also defeated
by a single vote in the legislative council.At the Commonwealth level, the Restoring Territory
Rights (Assisted Suicide Legislation) Bill 2015, a bill designed to allow territories to legislate
on VAD, was defeated in the senate by two votes in August 2018. An independent upper house
member has introduced the End-of-Life Choices (Voluntary Assisted Dying) Bill 2020 (Tas)13
into the Tasmanian parliament. In New Zealand, the End of Life Choice Bill 2019 (NZ) was
passed by the national parliament and was then the subject of a vote in favour of its implementa-
tion in a referendum held in October 2020.

The Victorian initiative

On 19 June 2019, the Voluntary Assisted Dying Act 2017 (Vic) came into force. Its genesis lay in
a 2016 report to the legislative council of the Victorian parliament by the parliament’s Legal and
Social Issues Committee14 which received 1,037 submissions, 925 from individuals in a private
capacity and 112 from organisations.The key findings of the report were that

• As a society, we are hesitant to talk about death, which is considered a taboo subject.This
inhibits planning for end-of-life care, and may result in a person’s end-of-life wishes not
being followed.
• Although most people in Victoria wish to die at home, in reality most of them will die in
hospital.
• Demand for palliative care is steadily increasing, and is expected to continue to do so. At
the same time, the diseases and needs of palliative care patients have increased in complex-
ity. As such,Victoria’s palliative care sector is overburdened and needs better support from
government.

13 www.parliament.tas.gov.au/lc/gaffney/EOL.pdf accessed 11 November 2020.

14 Inquiry into End of Life Choices: Final Report www.parliament.vic.gov.au/file_uploads/LSIC_pF3XBb2L.pdf
accessed 11 November 2020.

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 Ian Freckelton

• Despite Victoria having good palliative care services available, those who could benefit the
most, often receive care too late.
• Carers and the volunteer workforce are integral to Victoria’s palliative care system.
• Although the advance care planning process has proven benefits, there are low awareness
and implementation rates for advance care plans in Victoria and Australia.
• Existing end-of-life care legislation is confusing in many ways, and causes uncertainty, par-
ticularly for health practitioners.
• The legal framework for advance care planning spans several statutory provisions and some
legal issues may rely on common law rulings. Substitute decision-making provisions are con-
fusing and poorly understood by doctors. In addition, the law does not provide certainty that
a person’s wishes detailed in an advance care plan will be carried out when they lose capacity.
• Prohibition of assisted dying is causing some people great pain and suffering. It is also lead-
ing some to end their lives prematurely and in distressing ways.
• Instances of assisted dying are rare, even in jurisdictions where it is legal.Assistance in dying
is, in the vast majority of cases, provided to people in what would otherwise be the final
weeks of their lives.
• Government support and funding of palliative care have not declined when assisted dying
frameworks have been introduced.
• Courts invariably impose lenient penalties without jail time on people who assist a loved
one to end their life.This is true in Australia and in similar overseas jurisdictions.
• Everyone’s end-of-life care needs differ. It is important that Victoria has a system in place
to cater for the needs of individuals, whilst ensuring that there are safeguards in place to
protect vulnerable people.

The committee recommended that the Victorian government introduce a legislated framework
for voluntary assisted dying and also develop a holistic, evidence-based, interdisciplinary frame-
work for palliative care services.The government accepted 44 of the report’s 49 recommenda-
tions15 and established a Ministerial Advisory Panel to provide advice on implementation issues.
It provided its report in July 201716 and shortly afterwards legislation was introduced into and
passed by both houses of the Victorian parliament.
The Victorian regime is avowedly conservative and contains 68 safeguards directed towards
giving the community confidence that the legislation will not be abused.17 A person is able to
access voluntary assisted dying if

(a) The person has made a first request; and

(b) The person has been assessed as eligible for access to voluntary assisted dying by
(i) The co-ordinating medical practitioner for the person; and
(ii) A consulting medical practitioner for the person;

15 Government Response to the Legal and Social Issues Committee Inquiry into End of Life Choices Final Report
(8 December 2016) www.health.vic.gov.au/about/legislation/voluntary-assisted-dying-bill/end-of-life-choices
accessed 11 November 2020.
16 Ministerial Advisory Panel on Voluntary Assisted Dying, Final Report (July 2017) www.google.com/url?sa=t&rct
=j&q=&esrc=s&source=web&cd=1&ved=2ahUKEwjI2JLgwPfmAhWlwzgGHcB9CHYQFjAAegQIAhAC
&url=https%3A%2F%2F2.zoppoz.workers.dev%3A443%2Fhttps%2Fwww2.health.vic.gov.au%2FApi%2Fdownloadmedia%2F%257BA27EEE2F-02DE-44
BF-8347-C901CF20B7E5%257D&usg=AOvVaw3_nBorqc9RG9BJhWerVL9r accessed 11 November 2020.
17 See J Rutherford,‘Doctors and the Voluntary Assisted Dying Act 2017 (Vic): Knowledge and General Perspectives’
(2020) 27 Journal of Law and Medicine 952.

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 Voluntary assisted dying law reform

(c) The person has made a written declaration; and

(d) The person has made a final request to the co-ordinating medical practitioner; and
(e) The person has appointed a contact person; and
(f)The co-ordinating medical practitioner has certified in a final review form that the request
and assessment process has been completed as required by this act; and
(g) The person is the subject of a voluntary assisted dying permit.18

‘Voluntary assisted dying’ is defined to mean ‘the administration of a voluntary assisted dying
substance and includes steps reasonably related to such administration.’19
The capacity of a person to participate in the regime is closely regulated. It is provided that
a person has decision-making capacity in relation to voluntary assisted dying if the person is
able to

(a) Understand the information relevant to the decision relating to access to voluntary assisted
dying and the effect of the decision; and
(b) Retain that information to the extent necessary to make the decision; and
(c) Use or weigh that information as part of the process of making the decision; and
(d) Communicate the decision and the person’s views and needs as to the decision in some way,
including by speech, gestures, or other means.20

For these purposes, a person is presumed to have decision-making capacity unless there is evi-
dence to the contrary and is taken to understand information relevant to a decision if the person
understands an explanation of the information given to the person in a way that is appropriate
to their circumstances, whether by using modified language, visual aids, or any other means.21
In determining whether or not a person has decision-making capacity, it is required that regard
be had to the following:

(a) A person may have decision-making capacity to make some decisions and not others;
(b) If a person does not have decision-making capacity to make a particular decision, it may be
temporary and not permanent;
(c) It should not be assumed that a person does not have decision-making capacity to make a
decision:
(i) On the basis of the person’s appearance; or
(ii) Because the person makes a decision that is, in the opinion of others, unwise;
(d) A person has decision-making capacity to make a decision if it is possible for the person to
make a decision with practicable and appropriate support.22

A registered health practitioner who has a conscientious objection to voluntary assisted dying
has the right to refuse to

(a) Provide information about voluntary assisted dying;

18 Voluntary Assisted Dying Act 2017 (Vic), s6.

19 ibid s3.
20 ibid s4(1).
21 ibid s3(2)–(3).
22 ibid s4(4).

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 Ian Freckelton

(b) Participate in the request and assessment process;

(c) Apply for a voluntary assisted dying permit;
(d) Supply, prescribe, or administer a voluntary assisted dying substance;
(e) Be present at the time of administration of a voluntary assisted dying substance; and
(f) Dispense a prescription for a voluntary assisted dying substance.23

For a person to be eligible for access to voluntary assisted dying:

(a) They must be aged 18 years or more; and

(b) They must:
(i) Be an Australian citizen or permanent resident; and
(ii) Be ordinarily resident in Victoria; and
(iii) At the time of making a first request, have been ordinarily resident in Victoria for at
least 12 months; and
(c) They must have decision-making capacity in relation to voluntary assisted dying; and
(d) They must be diagnosed with a disease, illness, or medical condition that
(i) Is incurable; and
(ii) Is advanced, progressive, and will cause death; and
(iii) Is expected to cause death within weeks or months, not exceeding six months; and
(iv) Is causing suffering to the person that cannot be relieved in a manner that the person con-
siders tolerable.24

If the person is diagnosed with a disease, illness, or medical condition that is neurodegenera-
tive, that disease, illness, or medical condition must be expected to cause death within weeks or
months, not exceeding 12 months.25
Access to voluntary assisted dying is predicated upon a series of requests by the patient, and
assessments, declarations, and reviews by the assessing and co-ordinating medical practitioner.
The medical practitioner is obliged to apply for either a self-administration permit for the
patient or a practitioner administration permit, the latter requiring additional administrative
steps.
Controversy remains about whether the Victorian legislation is achieving its stated goals,
with some contending that the legislation fails to adequately respect patients’ autonomy, to
alleviate human suffering, and to facilitate open discussions about end-of-life issues,26 while
others argue that the legislation risks eroding the culture of care amongst health practitioners
and creating a risk that patients will feel under pressure to avail themselves of voluntary assisted
dying.Another issue under the legislation is its complexity with a requirement for at least three
formal requests for voluntary assisted dying and four when it is a health practitioner who will
administer the substance causing death.As White et al. have observed:

A process that is described as rigorous could be experienced as onerous … This may

complicate, or even frustrate, the policy goals of respecting autonomy and alleviating

23 ibid s7.
24 ibid s9(1).
25 ibid s9(4).
26 See B White, K Del Villar, E Close and L Wilmott, ‘Does the Voluntary Assisted Dying Act 2017 (Vic) Reflect
its Stated Policy Goals?’ (2020) 43(2) University of New South Wales Law Journal 23; see also C Johnston and J
Cameron,‘Discussing Voluntary Assisted Dying’ (2018) 26(2) Journal of Law and Medicine 454.

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 Voluntary assisted dying law reform

suffering by precluding, or at least delaying, eligible persons’ access to VAD.These per-

sons – who by definition must be suffering and generally be expected to die within
six months – may find the process overwhelming and too difficult to navigate and
consequently choose not to proceed.27

Others have argued that the legislation is too restrictive and contains too many checks and bal-
ances, thereby depriving persons of meaningful access to dying with dignity who do not have
the requisite terminal illnesses, or who have a comorbid psychiatric condition, or who can-
not locate medical practitioners who will assist them, or who are under the age of 18 years. A
significant percentage of palliative medicine doctors have expressed concern about the impact
on their specialty flowing from the implementation of VAD.28 Others have questioned the
prioritisation of self-administration, with some arguing that this unreasonably inhibits patient
autonomy. Issues of access to the legislation, particularly those living outside the metropolitan
area of Melbourne, remain.29 A difficult aspect of the regime is the preclusion under section 8
on a registered health practitioner initiating discussion with a person ‘that is in substance about
voluntary assisted dying’ or in substance suggests voluntary assisted dying to the person. Platt30
has lambasted the limitation as ‘significantly paternalistic’ and asserted that it creates an unrea-
sonable impediment to a discussion taking place on the subject between a doctor and a patient
unless the patient unequivocally and expressly initiates it.
The Victorian legislation came into force on 19 June 2019. From that date until 30 June 2020,
201 people were approved for a self-administration permit and 30 for a practitioner administra-
tion permit. Medications were dispensed for self-administration to 154 patients. Medication was
self-administered by 104 patients and was administered to 20 patients.31 Thus, the first observa-
tion that must be made is that, in spite of the notoriety of the legislation and the degree of
community engagement in its passage, only a very modest number of people availed themselves
of its options in the first months of its operation.This constitutes something of a contrast to the
much more significant uptake of the Canadian legislation.32
A Melbourne oncologist who sits on the board of Dying with Dignity and has assisted a
significant number of patients to obtain permits, has asserted that the biggest red-tape hurdle to
many of his patients has been in identifying a specialist doctor who has undertaken the manda-
tory assisted dying training.33 In particular, there has been a shortage of haematologists who have
undertaken the required training although 365 doctors had completed the training by the end
of 2019, a third of them based in regional Victoria.

27 B White, K Del Villar, E Close and L Wilmott, ‘Does the Voluntary Assisted Dying Act 2017 (Vic) Reflect its
Stated Policy Goals?’ (2020) 43(2) University of New South Wales Law Journal 23 at 32.
28 Rutherford (n 17).
29 See BP White, L Willmott and E Close,‘Victoria’s Voluntary Assisted Dying Law: Clinical Implementation as the
Next Challenge’ (2019) 210(5) Medical Journal of Australia 1.
30 H Platt,‘The Voluntary Assisted Dying Law in Victoria – A Good First Step but Many Problems Remain’ (2020)
27 Journal of Law and Medicine 535.
31 Voluntary Assisted Dying Review Board, Report of Operations January–June 2020 https://apo.org.au/sites/
default/files/resource-files/2020-09/apo-nid308083.pdf accessed 11 November 2020.
32 See Government of Canada, Fourth Interim Report on Medical Assisted Dying in Canada, www.canada.ca/en/health
-canada/services/publications/health-system-services/medical-assistance-dying-interim-report-april-2019.html
accessed 11 November 2020.
33 M Cunningham, ‘Five Applications to Die Lodged Each Week Under State’s Euthanasia Laws’ (26 December
2019) The Age www.theage.com.au/national/victoria/five-applications-to-die-lodged-each-week-under-state-s
-euthanasia-laws-20191226-p53mxr.html accessed 11 November 2020.

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 Ian Freckelton

A potential check and balance on the legislation is the Voluntary Assisted Dying Review
Board which (under section 93), amongst other things, has the function of monitoring matters
related to voluntary assisted dying in Victoria, reviewing functions and powers under the act,
promoting compliance with the act, and referring any issues it identifies to relevant persons,
including the chief commissioner of police and the state coroner. Thus, the role of the board
is not itself to investigate compliance with the act but, where it encounters anomalies, to refer
them to other entities for follow-up.
As yet, the board has not publicly released any analysis of the categories of patients who have
sought or obtained permits, nor of those who have self-administered a substance to bring about
their death, or have received a health practitioner’s assistance to do so. It has stated that it

has identified potential ways to improve the operation of the voluntary assisted dying
process and updated the resources available to health professionals and those people
wanting to access it.These insights were gained from case reviews, evidence, feedback
from individuals, medical practitioners and nominated contact people, as well as letters
from the Victorian public. We share what we learn with DHHS and other agencies
involved to improve the ongoing operation of the Act.34

However, its analysis of these issues has not been made public, rendering public evaluation of
the operation of the legislation and the effectiveness of the board as an oversighting mechanism
very difficult.

The Western Australian initiative

The Western Australian government established a voluntary assisted dying ministerial panel
which published its final report in 2019.35 It recommended a voluntary assisted dying regime
and that to access such a scheme a person should have to meet all of the following eligibility
criteria:

1. Be an adult, aged 18 years or over; and

2. Be an Australian citizen or permanent resident and have been ordinarily resident in Western
Australia for 12 months at the time of making the request; and
3. Have decision-making capacity in relation to a decision about voluntary assisted dying; and
4. Be diagnosed with an eligible condition, where an eligible condition is an illness, disease,
or medical condition that
a. Is advanced, progressive, and will cause death; and
b. Is causing suffering to the person that cannot be relieved in a manner the person con-
siders tolerable; and
5. Death is reasonably foreseeable for the person within a period of 12 months.

34 Voluntary Assisted Dying Review Board, Report of Operations, June to December 2019 (2020) www.bettersafer
care.vic.gov.au/sites/default/files/2020-02/VADRB_Report%20of%20operations%202019-2020.pdf accessed
11 November 2020.
35 Ministerial Expert Panel on Voluntary Assisted Dying, Final Report (2019) www.health.wa.gov.au/~/media/
Files/Corporate/general%20documents/Voluntary%20assisted%20dying/PDF/voluntary-assisted-dying-final-r
eport.pdf accessed 11 November 2020.

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 Voluntary assisted dying law reform

It also proposed a residency requirement but that the State Administrative Tribunal be able to
dispense with this in exceptional circumstances on compassionate grounds.
On 10 December 2019, the Voluntary Assisted Dying Bill 2019 (WA) was passed by the
Western Australian parliament. It has most features in common with the Victorian legislation,
but some distinctive characteristics.There will be an 18-month implementation period led by
the Department of Health.The key features of the Western Australian voluntary assisted dying
scheme, as ultimately enacted, are as follows.To access voluntary assisted dying, a person must be
independently assessed as eligible by two medical practitioners: the co-ordinating practitioner
and the consulting practitioner.36 These medical practitioners must meet certain requirements
and have undergone mandatory training. They may also refer the person for additional assess-
ments if required.
During the process, the person must make three separate requests for voluntary assisted
dying: a first request, a written declaration, and a final request.The written declaration must be
witnessed by two people (who meet specific requirements).
The eligibility requirements require that the person is diagnosed with at least one disease,
illness, or medical condition that

(i) Is advanced, progressive, and will cause death; and

(ii) Will, on the balance of probabilities, cause death within a period of six months or, in the
case of a disease, illness, or medical condition that is neurodegenerative, within a period of
12 months; and
(iii) Is causing suffering to the person that cannot be relieved in a manner that the person con-
siders tolerable.37

Voluntary assisted dying may be through self-administration or practitioner administration of

the voluntary assisted dying substance – this is a decision made in consultation with the co-
ordinating medical practitioner. If self-administration, the person must appoint a contact person
who has designated responsibilities, including return of any unused substance. If practitioner
administration this may be done by a medical practitioner or by a nurse practitioner (who meet
nominated requirements).
The death certificate must not include any reference to voluntary assisted dying.
Throughout the process, the person must be informed of many different aspects relating to
voluntary assisted dying, as well as their treatment and palliative care options. Fundamental to
the process is that it remains voluntary and free from coercion. The person can withdraw or
revoke their involvement at any stage.
Health practitioners are also able to refuse to participate in voluntary assisted dying for any
reason (including conscientious objection).
Healthcare workers must not initiate discussion about, or suggest, voluntary assisted dying to
a person to whom they are providing health or professional care services. However, an exception
to this is medical practitioners or nurse practitioners if, at the same time, they also inform the
person about treatment and palliative care options available to them and the likely outcomes of
that care and treatment.
The legislation was controversial, with the head of the Australian Medical Association in
Western Australia, Dr Miller, contending that it was vital that state spending on palliative care be

36 Voluntary Assisted Dying Act 2019 (WA), s15.

37 ibid s16(1)(c).

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 Ian Freckelton

substantially increased as part of the initiatives:‘Palliative care is a human right.There must be a

significant increase in funding for proper palliative care as part of the debate over VAD.’38 In the
biggest ever survey conducted among Western Australian doctors, more than 1,500 expressed
concerns about the legislation placed before parliament.39 The survey demonstrated that a large
majority of doctors believed that at least one of the two doctors involved in the VAD process
should be an up-to-date specialist in the area of the patient’s disease, in Victoria; while 91%
agreed that some groups of doctors should be exempt from all responsibilities to perform acts
under the VAD bill, such as doctors in training, administrators, or those who are never involved
in end-of-life care. Of the doctors surveyed, 78% believed there should be a permit approval
process before accessing VAD, as is the case in Victoria; while 55% believed a referral to a psy-
chiatrist for mental health and/or capacity assessment should be mandatory before accessing
VAD. Large majorities also expressed concern about the proposed legislation when it came to
the storage of VAD substances at home and what time should elapse before a patient should be
reassessed; while 90% of doctors surveyed wanted measures that would prevent euthanasia busi-
ness models that generated large profits.

Queensland developments
In May 2020, with a state election scheduled for October, the Queensland premier, Annastacia
Palaszczuk, rejected a recommendation from the government’s health committee that voluntary
assisted dying be debated in parliament following an inquiry which had extended over the
better part of a year.40 Instead, although the committee had drafted a bill as part of its report,
she proposed to refer the issue of voluntary assisted dying to the Queensland Law Reform
Commission, which would report some six months after the election.
The committee received nearly 5,000 submissions and recommended that the government
implement legislation based largely on the Victorian model, limited to persons aged 18 years or
older who are ordinarily resident in Queensland. It proposed that eligibility for access require a
person to have been diagnosed by a medical practitioner as having an advanced and progressive
terminal, chronic, or neurodegenerative medical condition that cannot be alleviated in a manner
acceptable to the person, and that the condition will cause death. It recommended that a vol-
untary assisted dying scheme not incorporate precise time frames for a person’s anticipated date
of death with which voluntary assisted dying could be accessed due to ‘the complex, subjective
and unpredictable nature of the prognosis of terminal illness.’41
The committee recommended that a person not be rendered ineligible only because the
person has a mental health condition, provided that they have decision-making capacity, and
proposed a review body similar to that existing in Victoria. By November 2020 the law Reform
Commission had published a legal framework consultative document.42

38 AMA Western Australia,‘Changes to Voluntary Assisted Dying Bill Vital’ (8 October 2019) www.amawa.com.au/
news/changes-to-voluntary-assisted-dying-bill-vital/.
39 ibid.
40 Queensland Parliament, Health, Communities, Disability Services and Domestic and Family Violence Prevention
Committee,Voluntary Assisted Dying, Report No 34, March 2020 www.parliament.qld.gov.au/Documents/Tabl
eOffice/TabledPapers/2020/5620T490.pdf accessed 11 November 2020.
41 ibid, recommendation No 5.
42 Queensland Law Reform Commission, A Legal Framework for Voluntary Assisted Dying, WP No 79 (November
2020) https://www.qlrc.qld.gov.au/__data/assets/pdf_file/0003/658506/qlrc-wp-79-2020.pdf (accessed 7 March
2021).

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The New Zealand initiative

New Zealand has seen significant attempts to reform its legislative preclusions on physician-
assisted suicide. In the aftermath of the Northern Territory’s legislation, a private member of
parliament, Michael Laws, joined forces with a fellow parliamentarian, Cam Campion, who
was then terminally ill with cancer, and together they promoted the Death with Dignity Bill
1995. Mr Campion’s plight generated considerable sympathy. The bill was proposed to come
into force only after a national referendum to be held at the time of the 1996 general election.
The bill was voted down (not to be introduced into the House and sent to a select committee)
by 61:29.
In 2003, the deputy leader of the New Zealand Party, Peter Brown, introduced the Death
with Dignity Bill 2003 (NZ). It was very similar to the earlier proposed legislation: it would
have allowed persons with a terminal illness or who were incurably ill to request a medically
qualified person to end their lives in a ‘humane and dignified way – and to provide for that to
occur after medical confirmation, a psychiatric assessment, counselling and personal reflection.’
The bill did not proceed after first reading on 30 July 2003 following a personal vote of 60:58
with one abstention.
The Labour MP, Maryan Street, introduced an End of Life Choice Bill in July 2012 but
withdrew it as a general election was approaching and she was concerned that it would not
receive the analysis it deserved.At the request of the Labour leader, she did not reintroduce the
bill after the 2014 election.
The role of a dying human rights lawyer, Lecretia Seales, ultimately proved integral to the
impetus towards dying with dignity legislation in New Zealand.43 Ms Seales (1973–2015) was
diagnosed at the age of 38 with a brain tumour. She received brain surgery, chemotherapy,
and radiotherapy to little avail and placed a case before the New Zealand High Court seek-
ing a declaration that her general practitioner could lawfully assist her to terminate her life by
administering a fatal drug with her consent or providing to her such a drug in the knowledge of
how she would use it.44 She also sought declarations that the homicide and aiding and abetting
provisions in the Crimes Act 1961 (NZ) were incompatible with the ‘right not to be deprived
of life’ and the right not to be ‘subjected to cruel, degrading, or disproportionately severe treat-
ment’ under Articles 8 and 9 of the New Zealand Bill of Rights Act 1990 (NZBORA). Her case
was heard by Collins J, one of New Zealand’s leading medical lawyers.45 The decisions of the
Supreme Court of Canada in Carter v Canada46 and of Fabricius J in Stransham-Ford v Minister of
Justice and Correctional Services47 were urged upon Collins J as persuasive precedents. He accepted
that palliative care cannot necessarily provide relief from suffering in all cases and that Ms Seales’

43 See A Geddis and C Gavaghan,‘Aid in Dying in New Zealand: Recent Legal Developments’ (2016) 23 Journal of
Law and Medicine 849; J Young and A Geddis,‘Vox Populi,Vox Dei? Previewing New Zealand’s Public Decision
in Assisted Dying’ (2020) 27 Journal of Law and Medicine (in press).
44 See G Gillett, ‘Lecretia Seales and Aid in Dying in New Zealand’ (2015) 23 Journal of Law and Medicine 308;
I Freckelton, ‘Medically Assisted Suicide: Recent Jurisprudence and the Challenges for Law Reform’ (2016) 23
Journal of Law and Medicine 735.
45 Seales v Attorney-General [2015] 3 NZLR 556; [2015] NZHC 1239.
46 [2015] SCC 5.
47 [2015] 3 All SA 109, later overturned by the Supreme Court of Appeal in Minister of Justice and Correctional Services
v Estate Late James Stransham-Ford [2017] 1 All SA 354; 2017 (3) SA 152 (SCA).

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 Ian Freckelton

perception of her pain was ‘unimpeachable’48 and that her circumstances were such that pallia-
tive care may not ameliorate her physical pain or her psychological and emotional suffering.49
Collins J concluded that Ms Seales’ case engaged four human rights principles: sanctity of life;
respect for human dignity; respect of individual autonomy; and protection of the vulnerable. He
found that Ms Seales would commit suicide if she took a fatal drug supplied to her by her doctor
and die from it – thus her doctor could be convicted of assisting her suicide. However, he found
that New Zealand’s legislative framework was relevantly different from that in Canada and
declined to conclude that the Crimes Act overreached its objective in its provisions precluding
the provision of assistance in suicide. He also found the objective of its provisions to be propor-
tionate because it achieved its ‘fair objective of protecting all life.The connection between the
impact of the law and its object are within the norms accepted in New Zealand society.’50 He
noted that the Canadian Supreme Court in Carter v Canada and the European Court of Human
Rights had concluded that persons in the circumstances of Ms Seales were not subjected to
‘treatment’ because they were unable lawfully to enlist the services of others to assist them end
their own lives. He pointedly emphasised:

By focusing upon the law it may appear that I am indifferent to Ms Seales’ plight.
Nothing could be further from the truth. I fully acknowledge that the consequences
of the law against assisting suicide as it currently stands are extremely distressing for
Ms Seales and that she is suffering because that law does not accommodate her right
to dignity and personal autonomy.51

In the aftermath of Lecretia Seales’ loss in court and death a short time later, her husband main-
tained her advocacy by publishing in 2016: Lecretia’s Choice: A Story of Love, Death and Law.52
Lecretia became the public face of New Zealand’s dying with dignity campaign that flow-
ered in the End of Life Choice Bill which was passed in November 2019 and received Royal
Assent on 16 November 2019.A poll in 2019 suggested that 72% of New Zealanders supported
some form of assisted dying.53 Moreover, shortly after the high court’s decision a petition was
presented to parliament requesting that ‘the House of Representatives investigate fully public
attitudes towards the introduction of legislation which would permit medically-assisted dying
in the event of a terminal illness or an irreversible condition which makes life unbearable.’The
petition was referred to the parliament’s Health Committee which received 21,981 written
submissions.
The End of Life Choice Bill 2019 (NZ) was introduced into parliament by David Seymour,
a man of Maori descent on his mother’s side, and leader of ACT New Zealand, a right-wing
neoliberal party. Its explanatory note stated that it proposed to give ‘people with a terminal ill-
ness or a grievous and irremediable medical condition the option of requesting assisted dying.’

48 Seales v Attorney-General [2015] 3 NZLR 556; [2015] NZHC 1239 at [38].

49 ibid at [47]–[48].
50 ibid at [190].
51 ibid [192].
52 M Vickers, Lecretia’s Choice:A Story of Love, Death and Law (Text Publishing 2016).
53 See M Sherman and A Whyte, ‘Strong Support for Legalising Euthanasia in 1 NEWS Colmar Brunton Poll, as
MPs Set to Thrash Out Details’ (30 July 2019) 1 News www.tvnz.co.nz/one-news/new-zealand/strong-support
-legalising-euthanasia-in-1-news-colmar-brunton-poll-mps-set-thrash-details accessed 11 November 2020. See
also J Young and A Geddis,‘Vox Populi,Vox Dei? Previewing New Zealand’s Public Decision in Assisted Dying’
(2020) 27 Journal of Law and Medicine 937.

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It passed its first and second readings, the latter in June 2019 by a vote of 70:50.The outcome
of the vote was that at the 2020 national election there would be a referendum on the issue,54
together with a second referendum on the legalisation of recreational cannabis.
Section 4 of the act defines ‘assisted dying’ as

(a) The administration by an attending medical practitioner or an attending nurse practitioner

of medication to the person to relieve the person’s suffering by hastening death; or
(b) The self-administration by the person of medication to relieve their suffering by hastening
death.

It provides that a person who is eligible for assisted dying must be a New Zealand citizen or
permanent resident of 18 years or older who

• Suffers from a terminal illness that is likely to end the person’s life within six months; and
• Is in an advanced state of irreversible decline in physical capability; and
• Experiences unbearable suffering that cannot be relieved in a manner that the person con-
siders tolerable; and
• Is competent to make an informed decision about assisted dying. (section 5(1))

A person is not ineligible for assisted dying by reason only that the person is suffering from
any form of mental disorder or mental illness; or has a disability of any kind; or is of advanced
age (section 5(2)). A person is stipulated to be competent to make an informed decision about
assisted dying if they are able to

• Understand information about the nature of assisted dying that is relevant to the decision;
and
• Retain that information to the extent necessary to make the decision; and
• Use or weigh that information as part of the process of making the decision; and
• Communicate the decision in some way. (section 6)

A health practitioner is stated not to be under any obligation to assist a person who wishes to
exercise the option of receiving assisted dying if they have a conscientious objection to provid-
ing the assistance (section 8(1)). As in Victoria, a health practitioner who provides any health
service to a person must not, in the course of providing that service to the person:

(a) Initiate any discussion with the person that, in substance, is about assisted dying under this
act; or
(b) Make any suggestion to the person that, in substance, is a suggestion that the person exer-
cise the option of receiving assisted dying under this act. (section 10(1))

A person seeking assistance in dying must inform the attending medical practitioner of their
wish, who, in turn, must give the person information about the prognosis for their terminal ill-
ness, the irreversible nature of assisted dying, and the anticipated impacts of assisted dying (sec-

54 New Zealand Government, ‘End of Life Choice Referendum’ www.referendums.govt.nz/endoflifechoice/

index.html?gclid=Cj0KCQjwuJz3BRDTARIsAMg-HxUSzZEBqxptWMEWJcLXSsBv1-vcwDzmQrmnqs7
6mFXQ5cUx3v-kSYIaAlgzEALw_wcB.

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 Ian Freckelton

tion 11(2)(a)). The minister is obliged to appoint an end-of-life review committee, consisting
of a medical ethicist and two health practitioners, one of whom must practice in the area, to
consider assisted death reports; to report to the registrar (assisted dying) (see section 27) whether
it considers that the information contained in an assisted death report shows satisfactory compli-
ance with the requirements of the act; and to direct the registrar to follow up on any informa-
tion contained in an assisted death report that the review committee considers does not show
satisfactory compliance with the requirements of the act (section 26(1)–(2)).
On 17 October 2020, New Zealanders voted in a binding referendum (at the same time as
their national election) to determine whether the End of Life Choice Act 2019 (NZ) should
come into force. Lively debate preceded the vote with diverse views being expressed.The disa-
bility rights commissioner, Paula Tesoriero, opposed the legalisation of dying with dignity, main-
taining that it undermined years of work to change the perception of New Zealanders with
disabilities.55 Hospice New Zealand also raised reservations about the proposed change to the
law56 and took action in the high court to seek declarations in respect of the ramifications of the
legislation. It was partially successful and obtained the following declaratory relief:

(a) The End of Life Choice Act does not require hospices or other organisations to provide
assisted dying services.They are entitled to choose not to provide these services.This does
not depend on a hospice or other organisation having a conscientious objection, although
that may often be the reason, and allowing hospices or other organisations not to offer
assisted dying services is consistent with the right to freedom of conscience under section
13 of NZBORA.
(b) Hospices or other organisations that choose not to offer assisted dying services may employ
or engage health practitioners on the basis that these services are not provided by the hos-
pices or organisations, but it will also be necessary to have arrangements for how health
practitioners can comply with their objections under the End of Life Choice Act if a
request is made of them by a person in the hospice or organisation’s care.
(c) The End of Life Choice Act does not exclude the operation of the code, except to the
extent that it is expressly overridden by the act or cannot apply alongside the requirements
of the act.
(d) The End of Life Choice Act does not exclude the professional obligations of health prac-
titioners as set out by the Medical Council and the Nursing Council. Health practitioners
required to take steps under the End of Life Choice Act may only do so if they have the
competence to do so in accordance with their professional standards.The ‘attending medi-
cal practitioner’ is the patient’s medical practitioner, whose scope of practice permits them
to provide the services required of them under the act and who has the necessary compe-
tence to provide those services.
(e) The right to conscientiously object encompasses its usual meaning in medical practice. It
will encompass when a doctor or nurse holds a deeply felt belief that it is wrong for them
to provide the assistance for personal, moral reasons, internal to them.57

55 See L Walters,‘Disability Rights Commissioner Opposes Assisted Dying Bill’ (7 March 2018) Stuff www.stuff.co
.nz/national/politics/102046196/disability-rights-commissioner-opposes-assisted-dying-bill?rm=a accessed 11
November 2020.
56 Hospice New Zealand, ‘End of Life Choice Act’ www.hospice.org.nz/resources/end-of-life-choice-act-our
-concerns/high-court-action-by-hospice-nz/ accessed 11 November 2020.
57 Hospice New Zealand v Attorney-General [2020] NZHC 1356 at [214] per Mallon J.

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Ultimately, the vote in favour of legalising assisted dying was emphatic with 65.1% of New
Zealand voters supporting the change to the law.58 The result is that the legislation will come
into force on 6 November 2021.

Conclusion
It is apparent that recent years have seen a groundswell of public support in Australia and New
Zealand in favour of voluntary assisted dying. However, the issues relating to legislation author-
ising the lawful administration of a substance prescribed by a medical practitioner to enable
death to take place remain contentious within both the general community and the medical
profession. Ensuring well-funded palliative care services which in many scenarios will reduce
the need for such legislative options is increasingly being recognised as important.
The legislative initiatives in Australia and New Zealand, commencing with the Voluntary
Assisted Dying Act 2017 (Vic), have been highly conservative by international standards. The
movement towards such reforms to the law has been gradualist and tentative, as exemplified by
the institution of a referendum in New Zealand even after parliamentary passage of legislation,
and by the deferral of a vote on legislation until after a state election in Queensland.
In addition, the legislation passed and prefigured throughout Australia and New Zealand is
particularly demanding in terms of eligibility criteria and is characterised by the incorporation
of multiple checks and balances.This has gone a considerable way towards alleviating commu-
nity concern and towards neutralising opposition from professional associations representing
doctors, nurses, and pharmacists.An outcome has been only a very modest uptake of the volun-
tary assisted dying option over the early period of its availability in Victoria.
The legislative schemes in Australia and New Zealand have incorporated confinement of
eligibility for voluntary assisted dying to adults resident in the relevant jurisdiction (to prevent
death tourism59), persons with a terminal condition likely to lead to death within a relatively
short time frame, a requirement that a concomitant of the condition is suffering that is unen-
durable to them, and requiring clear indicia of capacity to provide informed consent. In most
jurisdictions, constraints have been imposed upon health practitioners raising the subject of vol-
untary assisted dying with patients in an effort to avoid the imposition of pressure or perceptions
that pressure is being exerted or encouragement given to patients to end their lives.
As in other countries, the legislation already passed and likely to be passed will require
close evaluation to determine whether it is achieving its objective of allowing patients to make
their own decisions to end their suffering at a time and in circumstances that they choose.
Oversighting committees and boards internationally have had only modest levels of success
in making the voluntary assisted dying processes accountable.60 However, the role, powers,
and transparency of external and independent reviews of deaths taking place under voluntary
assisted dying regimes are perhaps the most important checks and balances over the legislation.

58 Electoral Commission of New Zealand,‘Referendum Results’ (6 November 2020) www.electionresults.govt.nz

/electionresults_2020/referendums-results.html accessed 11 November 2020.
59 See C Yu, J Wen and F Meng, ‘Defining Physician Assisted Suicide Tourism and Travel’ (2020) 44(4) Journal of
Hospitality and Tourism Research 694; DS Miller and C Gonzalez,‘When Death if the Destination:The Business
of Death Tourism – Despite Legal and Social Implications’ (2013) 7(3) International Journal of Culture Tourism
and Hospitality Research 293.
60 See I Freckelton, ‘Assisted Dying: Learning from the International Experience’ in I Freckelton and K Petersen
(eds), Tensions and Traumas in Health Law (Federation Press 2017) 511–533.

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Assessment of diffuse effects upon the doctor–patient relationship and upon whether the
legislative provisions are being deployed inappropriately, including whether patients are expe-
riencing subtle forms of pressure to bring their lives to an end, will not be easy. Nor will it
be straightforward to evaluate whether checks and balances are succeeding in achieving their
objectives. High-quality, rigorous research (including comparative research) evaluating the legis-
lative regimes, their implementation, and how they are perceived both within the general com-
munity and amongst health practitioners will be very important.
For those jurisdictions in Australia and New Zealand which have recently implemented
such schemes, international experience demonstrates that there will be ongoing debate about
contentious issues under the threshold and procedural aspects of the legislative provisions.These
will include the criteria for eligibility to the schemes, preclusions on doctors raising the topic
with their patients, how capacity to take assisted dying decisions is to be measured, the extent of
the disentitling role of mental illness, and whether persons younger than 18 should be allowed
to utilise the provisions.
The Australian and New Zealand dying with dignity schemes that have enabled self-initiated
and physician-assisted dying for persons with terminal illnesses will function, amongst other
things, as socio-medical laboratories for the human rights issues that are involved.The three leg-
islative reforms in Victoria,Western Australia, and New Zealand have achieved popular accept-
ance by avowedly being conservative options. Undoubtedly, they will evolve on the basis of data,
experience, and ongoing changes in community attitudes. Experience gained in their imple-
mentation will constitute a useful component in the international corpus of information that
will enable comparative evaluation of physician-assisted dying, side by side with the schemes in
Europe, Canada, the United States, and Colombia. At their heart are conceptualisations of the
relevant human rights.Analysis of how these are affected by the legislative reforms should lie at
the heart of whether the Australian and New Zealand initiatives are emulated internationally.

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 21
COMPARATIVE PERSPECTIVES
ON MEDICAL AID IN DYING
The United States and Canada

Barbara A Reich

The United States and Canada share a border, but there are stark differences in the two coun-
tries’ healthcare systems and cultural attitudes towards ethically complex medical practices. A
country’s health insurance system speaks volumes about how its culture prioritises egalitarian
access to healthcare. And access to healthcare is indisputably one important constituent piece
of life, liberty, and the security of the person.1 Within the broader context of health and human
rights, it is interesting to consider whether and how a country’s culture also impacts practices
and laws relating to controversial medical practices such as voluntary euthanasia and other
forms of medical aid in dying (MAiD). This chapter will review the autonomy and human
rights underpinnings of these practices as they are available and utilised in the United States and
Canada, and will consider how cultural differences affect the general availability and specific
contours of MAiD and euthanasia.
The Universal Declaration of Human Rights (UDHR), Article 3, states that ‘Everyone has
the right to life, liberty, and security of person.’Article 12 says that ‘No one shall be subjected to
arbitrary interference with his privacy.’Article 29(2) states that

In the exercise of his rights and freedoms, everyone shall be subject only to such limi-
tations as are determined by law solely for the purpose of securing due recognition and
respect for the rights and freedoms of others and of meeting the just requirements of
morality, public order and the general welfare in a democratic society.2

All of these parts of the UDHR are potentially relevant to the ethical principle of patient
autonomy which includes the right of patients to receive appropriate care at the end of life that
reflects their wishes, promotes dignity, and minimises suffering.

1 Joseph C D’Oronzio, ‘A Human Right to Healthcare Access: Returning to the Origins of the Patients’ Rights
Movement’ (2001) 10 Cambridge Quarterly of Healthcare Ethics 285–298.
2 United Nations, Universal Declaration of Human Rights, www.un.org/en/universal-declaration-human-rights/
accessed 18 October 2020.

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 Barbara A Reich

As a start, a brief comparison of the two health insurance systems is instructive.The United
States spends the most as a percentage of its gross domestic product on healthcare compared
with other high-wealth nations,3 though some of this spending is driven by the higher pricing
of healthcare goods and services in the United States than elsewhere.Yet, even with all of this
spending, not every resident has insurance coverage. Medicare, the universal healthcare entitle-
ment programme in the United States, only provides coverage to individuals aged 65 and over.
A number of other federal insurance programmes, including Medicaid and the Veterans Affairs
Tricare programme, also cover various populations, but there is no government-sponsored guar-
anteed coverage of individuals aged 18–64. President Obama’s 2010 Patient Protection and
Affordable Care Act (ACA) sought to extend coverage to uninsured individuals via expansion
of the Medicaid programme and to make the individual purchase of insurance more affordable.
It succeeded in these goals, but not to the point of universal coverage. Just before the ACA went
into effect at the end of 2010, over 16% of US residents (49.9 million people) had no health
insurance. By 2016, five years in, the ACA had resulted in historic lows in uninsured people,
with 10% of Americans aged 18–64 lacking insurance and a total uninsured rate of 8.6% for all
Americans. From that point, given the changing priorities of the Republican administration that
succeeded President Obama, the trend has been less encouraging. By 2018, 10.4% of individu-
als who were not yet eligible for Medicare were uninsured, an uptick of almost half a million
people compared with 2017. Overall, the ACA has led to significant increases in both Medicaid
and private insurance coverage, with almost 20 million more people insured than before,4 yet
the United States still has a substantial number of uninsured residents.
These relatively improved levels of coverage in the United States pale in comparison to other
wealthy countries in which nearly all residents enjoy the benefit of reliable and equitable access
to affordable healthcare. In every other high-wealth country, access to healthcare for all residents
is considered the responsibility of a just society, not a privilege for the more fortunate.The role
of government in ensuring this access is not seriously questioned in countries other than the
United States.
In Canada, the National Health Insurance programme provides universal coverage and is
funded by general taxes.The system is called ‘Medicare,’ but unlike US Medicare, the term refers
to a universal coverage system for residents of all ages.The federal government sets and admin-
isters national standards for the healthcare system through the Canada Health Act of 1984, and
provides funding. Under the Canada Health Act, each province or territory administers its own
plan and must provide comprehensive coverage to all residents, but each of the provincial and
territorial plans varies.5 Although private insurance coverage for services covered under provin-
cial and territorial plans is illegal, most Canadians purchase private supplementary insurance to
cover items and services, such as prescription drugs and dental care, which are not covered under
the provincial and territorial plans.6 By making the purchase of private insurance for services
covered by Medicare illegal, the Canadian government built in a bulwark against the potential
for inequality of healthcare based on wealth.To be sure, many inequalities remain in the system,

3 OECD Statistics, National Center for Health Statistics, www.oecd.org/els/health-systems/health-data.htm

accessed 14 October 2020.
4 Kaiser Family Foundation, Jennifer Tolbert et al., ‘Key Facts About the Uninsured Population’, www.kff.org (kkf,
2019).
5 Sara Allin and David Rudoler,‘The Canadian Health Care System’ (Commonwealth Fund) https://international
.commonwealthfund.org/countries/canada/ accessed 18 October 2020.
6 Goran Ridic et al., ‘Comparisons of Health Care Systems in the United States, Germany, and Canada’ (2012) 24
Materia Socio Medica 112–120.

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 Perspectives on medical aid in dying

but this provision at least prevents the development of a satellite private-pay system of poten-
tially superior care for those with higher incomes.
A country’s health insurance system is not the only influence on access to care and qual-
ity of care. In the United States, there are a number of state laws governing medical practice
and patients’ rights. Each of the 50 states has implemented its own laws addressing end-of-life
care and decision-making, and each state has its own common law addressing these matters.
In Canada, there are various provincial and territorial statutes, notably in Ontario7 and British
Columbia,8 addressing matters such as informed consent and substitute decision-making for
incapacitated patients, along with common law decisions that add to the body of healthcare law.
Although major structural reform to end-of-life care poses challenges in any country, the US
structure makes reform particularly difficult because of the 50 state governments and the lack
of an overarching federal statute or healthcare plan that reaches all patients prior to Medicare
eligibility.
When discussing MAiD and related practices more specifically, it is important to point out
that terminology matters, both because language reflects cultural values, and because the use of
the term ‘MAiD’ differs between Canada and the United States. First, it is worth noting that the
evolution of the terminology in the literature reflects the development of more nuanced under-
standing of the practice.What began as ‘physician-assisted suicide’ later evolved to ‘physician aid
in dying’ and to the most current terms,‘medical aid in dying’ and ‘medical assistance in dying.’
The term ‘therapeutic dying’ has appeared in the literature but, in the opinion of this author, this
is a case where euphemism crosses the line into oxymoron.When public debate about MAiD
in the United States began, it was common to see the practice referred to as ‘physician-assisted
suicide.’The term ‘assisted suicide’ causes confusion because, under US state laws, even in states
where MAiD has been legalised, assisting in a suicide remains a criminal offense. The same is
true in Canada – assisting in a suicide remains a crime when it occurs outside the scope of
permitted aid in dying by medical professionals. Many of the US state statutes legalising MAiD
explicitly distinguish the practice from assisting in a suicide,9 both because only physicians can
participate in the practice, and the option is limited to patients who are terminally ill. In Canada,
the use of the term ‘medical assistance in dying’ rather than ‘physician assistance’ makes even
more sense because Canadian law allows both physicians and nurse practitioners to engage in
the practice (except in Québec).
In the United States, in states where it is legally permitted, MAiD refers only to a process in
which physicians write prescriptions for a lethal dose of medication at the request of a termi-
nally ill patient, who then must himself or herself ingest the medication, usually in liquid form.
No state permits a physician to administer a lethal medication to the patient directly, with the
patient’s express consent. In the United States and elsewhere, this latter practice is generally
referred to as ‘voluntary euthanasia.’ Despite the fact that voluntary euthanasia is illegal in the
United States, it does occur.10 Although, as explained below, some commentators may argue that

7 Ontario Health Care Consent Act 1996, www.ontario.ca/laws/statute/96h02 accessed 18 October 2020.
8 British Columbia Health Care (Consent) and Care Facility (Admission) Act, www.bclaws.ca/EPLibraries/bcla
ws_new/document/ID/freeside/00_96181_01 accessed 18 October 2020.
9 For example, the Oregon statute states that ‘Nothing in [the Act] shall be construed to authorize a physician or
any other person to end a patient’s life by lethal injection, mercy killing or active euthanasia. Actions taken in
accordance with [the Act] shall not, for any purpose, constitute suicide, assisted suicide, mercy killing or homicide,
under the law.’ Oregon Death with Dignity Act Chapter 127.880.
10 Ezekiel J Emanuel et al., ‘Attitudes and Practices of Euthanasia and Physician-Assisted Suicide in the United
States, Canada, and Europe’ (2016) 316(1) Journal of the American Medical Association 79–90.

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the distinctions between assisted dying and euthanasia are mainly semantic, the US law attempts
to draw a firm line between the two. By contrast, the term MAiD as used in Canada is a broader
term that includes both the self-ingestion option and voluntary euthanasia.
The heterogeneity of American culture and the divisiveness of its politics make issues at the
intersection of life, death, and medicine particularly challenging. There is no consensus in the
United States about the ethical propriety of, for example, the death penalty or abortion at the
other end of human life, and it is therefore unsurprising that Americans disagree about MAiD
as well. A 2005 Pew Research Center poll illustrates a deep division, finding that 46% of those
surveyed supported laws legalising medical aid in dying while 45% opposed such laws.11 More
recent polling indicates much stronger support for euthanasia, which remains illegal across the
United States, and slightly less but still strong support for MAiD. In a 2018 Gallup poll, a total
of 72% of Americans supported the legalisation of euthanasia for terminally ill patients while,
somewhat oddly, only 65% of those surveyed believed that physicians should be permitted by
law to assist in a dying patient’s suicide.12 For some, the requirement that the patient ingest the
medication may be perceived as preferable to euthanasia because it emphasises the volition of
the patient, with the physician merely facilitating the patient’s autonomous decision by pre-
scribing the medication whereas, in voluntary euthanasia, the physician may be perceived as
the prime mover in ending the patient’s life. For others, the act of or even the word ‘suicide’
may be viewed as more troubling than a direct intervention from a physician to end a patient’s
suffering at that patient’s request.When asked about the morality of both practices, support fell,
with only 54% of those surveyed saying that physician-assisted suicide is morally acceptable.13
This polling data thus indicates that some Americans, at least, are reluctant to outlaw a practice,
even when they believe it is morally wrong, which is consistent with the general ambivalence
that many may experience regarding these end-of-life practices. Polling data in Canada demon-
strates consistently high support for broad access to MAiD, with a recent poll finding that 86%
of Canadians support the practice.14
As the discussion that follows illustrates, both Canada and the United States continue to
struggle with ethical and implementation questions subsequent to the legalisation of MAiD.
The public discourse in the United States on these matters sometimes does little to advance
the debate, in part because some of those opposed to MAiD do not fully understand the details
of the laws which they find objectionable. Even those who are well informed about the law,
however, express valid concerns about its implementation and its effects on patient care and the
physician–patient relationship. A comparative review of MAiD legislation in the United States
and Canada through the lens of each country’s culture reveals some commonalities and some
striking differences.

11 Pew Research Center for the People and the Press, ‘More Americans Discussing and Planning End-of-Life
Treatment: Strong Public Support for Right to Die’ (Pew Research Center, 5 January 2006) www.people-press
.org/2006/01/05/strong-public-support-for-right-to-die/ accessed 18 October 2020.
12 Megan Brenan, ‘Americans’ Strong Support for Euthanasia Persists’ (Gallup, 31 May 2018) https://news.gallup.
com/poll/235145/americans-strong-support-euthanasia-persists.aspx.
13 ibid.
14 Jim Bronskill, ‘Majority of Canadians Surveyed Support Broader Assisted Dying Law: Leger Poll’ (Global News,
Canadian Press, 23 February 2020) https://globalnews.ca/news/6454314/leger-survey-assisted-dying-law/
accessed 14 October 2020.

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Legal status in the United States

In order to understand the complexities of the MAiD debate in the United States, it is necessary
to become familiar with several different layers of legal and ethical influence, including federal
constitutional law, state law, and the underlying ethical arguments. At the federal level, the US
Supreme Court has declined to find a constitutional right to medical aid in dying. In two com-
panion cases decided in 1997, the Court considered constitutional challenges to the validity of
state laws forbidding ‘assisted suicide’ which were interpreted to include MAiD. In its opinions,
the Court concluded that neither the Equal Protection Clause nor the Due Process Clause of
the Fourteenth Amendment guarantees the right of physician assistance in ending a patient’s
life.15 Moreover, the Court opined that the complexity of ethical issues made the question of
MAiD more appropriate for consideration by state legislatures.16 The US Supreme Court also
recognised a constitutionally protected right to palliative care.A majority of the justices opined
that it would be unconstitutional for any state to interfere with access to effective palliative
care, especially pain relief, at the end of life.This additional language was surprising, because it
was unnecessary to resolve the questions before the Court, but it has played a significant role
in building support for palliative care, including the liberal use of pain medications, at the end
of life.17
Criminal law does not recognise consent as a defence to homicide, so physicians who par-
ticipate in assisted dying can only do so and be safe from prosecution in states where there is
an explicit exception to laws that otherwise prohibit assisting suicide.To this end, several states
took up the Supreme Court’s invitation to address the question via legislation.The first state to
permit MAiD was Oregon, which enacted the Death with Dignity Act18 via voter referendum
in 1994 (before the Supreme Court had even decided the companion cases), although legal
challenges prevented its implementation until 1997.19 The Oregon law generated enormous
controversy and was challenged by a variety of groups including persons with disabilities. In
many states, the implementation of new MAiD legislation is challenged by physician and dis-
ability rights groups, claiming that the practice is inconsistent with the role of the physician as
healer and expressing concern about potential abuse of the practice with disabled patients, but
none of these challenges has so far succeeded in invalidating legislation.20
The federal government also stepped in to interfere with the implementation of the law,
enacting the ‘Assisted Suicide Prevention Restriction Act of 1997’ which forbade any federal
funding to support MAiD.21 The law therefore prohibits Medicare, Medicaid, and other fed-
eral programmes from paying for MAiD – i.e. the physician care and the drugs themselves.
Patients must instead rely on state funding, private insurance, or must pay out of pocket. The
US Department of Justice (DOJ) also attempted to prevent the implementation of the law

15 The relevant part of the Fourteenth Amendment to the US Constitution provides: ‘No State shall make or
enforce any law which shall abridge the privileges or immunities of citizens of the United States; nor shall any
State deprive any person of life, liberty, or property, without due process of law; nor deny to any person within its
jurisdiction the equal protection of the laws.’
16 Washington v Glucksberg, 521 US 702 (1997); Vacco v Quill, 521 US 793 (1997).
17 Robert A Burt,‘The Supreme Court Speaks: Not Assisted Suicide But a Constitutional Right to Palliative Care’
(1997) 337 New England Journal of Medicine 1234.
18 Or Rev Stat §§ 127.800–127.897.
19 Lee v Oregon, 107 F3d 1382 (9th Cir 1997) (denying challenges to the Oregon law by various groups based on
lack of standing).
20 Alan Meisel et al., The Right to Die (3rd ed, 2020) §12.06[B].
21 HR 1003; 105th Congress (1997–1998), PL No 105-12.

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by threatening to revoke the license to prescribe controlled substances of any physician who
participated in MAiD under the Oregon law. The attorney general at the time, John Ashcroft
(who was, interestingly, the former governor of Missouri at the time of the Nancy Cruzan
litigation), adopted the position that the use of controlled substances for aid in dying was not a
legitimate medical purpose.The legal challenge to this position and planned DOJ enforcement
action succeeded with the US Supreme Court ultimately ruling in favour of the Oregon law.22
Federal efforts to invalidate MAiD laws have continued periodically but none of these efforts
has succeeded.
As of this writing, MAiD has been legalised via statute in nine states and the District of
Columbia. It is permitted by statute in the following jurisdictions: California, Colorado, District
of Columbia, Hawai’i, Maine, New Jersey, Oregon,Vermont, and Washington. Interestingly, all
of these jurisdictions are coastal; as of now (2021), with the exception of Colorado, there is no
statutorily authorised MAiD in any of the interior states, including the Deep South and the
Midwest.This pattern of legalisation appears to reflect the political and cultural leanings of the
states in question – states on the East and West coasts of the United States tend to lean liberal
while southern and interior states are mainly (though not entirely) more conservative.
In addition, the state of Montana now permits MAiD, although the recognition of a right to
physician aid in dying in that state, and the related protection of physicians from prosecution,
arose via a different legal mechanism – a state Supreme Court decision. In the original lawsuit,
Robert Baxter, a terminally ill resident of Montana, several physicians, and the public interest
group Compassion and Choices, asked the state court to recognise a right to medical aid in
dying.They based the request on Montana’s constitution, which includes provisions recognising
individual dignity and the right to privacy. Although the state’s attorney argued that no such
interest existed in the constitution, the lower court agreed that the constitutional provisions
were written broadly enough to encompass a right to die with dignity, including with the aid
of a physician. It further concluded that physicians who provided such assistance would not be
subject to criminal charges or actions against their license to practice medicine.23
On appeal, the state’s Supreme Court held that it was unnecessary to reach the constitutional
question as the state’s public policy did not forbid medical aid in dying for terminally ill, men-
tally competent adults.24 Finding ‘no indication in Montana statutes that physician aid in dying is
against public policy,’ the Montana Supreme Court added that, because the terminally ill patient
initiates the request for the lethal medication, and because state law does not forbid suicide, such
requests are consistent with the public policy and statutes of Montana that promote a patient’s
right to die as they wish.As the court explained, Montana’s Terminally Ill Act

confers on terminally ill patients a right to have their end-of-life wishes followed, even
if it requires direct participation by a physician through withdrawing or withholding
treatment. …Nothing in the statute indicates it is against public policy to honor those
same wishes when the patient is conscious and able to vocalise and carry out the deci-
sion himself with self-administered medicine and no immediate or direct physician assistance.25

22 Gonzales v Oregon, 546 US 243 (2006).

23 Memorandum and Order, Montana First Judicial District Court (5 December 2008) https://compassionandchoi
ces.org/wp-content/uploads/2018/06/081205-Decision-and-Order-wm.pdf.
24 Baxter v Montana, 2009 MT 449.
25 ibid (emphasis supplied by author).

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Note that the Court’s language carefully limits the physician’s role to supplying medication for
a patient to ingest – voluntary euthanasia is not permitted in the United States. Since the state
Supreme Court’s decision, the issue of MAiD – both its ethical and legal status – remains the
subject of serious controversy in the state,26 with several bills submitted to the state legislature to
ban the practice.The Court’s interpretation of the relevant end-of-life statutes remains valid for
now and physicians can, if they choose, honour a terminally ill, competent patient’s request for
lethal medication without fear of criminal prosecution.
The Oregon law is reasonably representative of the other state laws and, in fact, served as the
model on which most of the statutes are based.The procedural safeguards are daunting – com-
mentators have noted that the legislation in the various states is ‘so carefully crafted, so narrowly
drawn, and so laden with procedural safeguards that it may well demand more energy and for-
titude to comply with it than some terminally ill people are likely to have.’27 Oregon’s Death
with Dignity Act allows a narrowly defined category of patients to request a prescription for
lethal medication from their physician in order to hasten death.To be eligible under the law, the
patient must (1) be an adult aged 18 or older; (2) have decisional capacity, defined as ‘the abil-
ity to make and communicate health care decisions to providers’; (3) be a resident of Oregon;
and (4) have a terminal disease, defined as ‘an incurable and irreversible disease that has been
medically confirmed and will, within reasonable medical judgment, produce death within six
months.’28 In addition to the preliminary eligibility requirements, Oregon’s Death with Dignity
Act requires that the patient make an oral request and a written request in a form specified by
the statute and witnessed by at least two individuals who can attest that the patient is signing
voluntarily. At least one of the witnesses must be a person who is not a relative, a legatee under
the patient’s will, or an owner or employee of the healthcare facility treating the patient.After a
waiting period of at least 15 days after the initial request, the patient must restate the oral request
to his or her physician.29 The patient’s attending physician is required, among other things, to
refer the patient to another physician for confirmation of the prognosis and of the patient’s
decisional capacity. Naturally, the patient must also receive information about the effect of taking
the medication, and has the right to rescind the request at any time.30 Finally, the law requires
physicians to inform patients about alternative palliative care options.31
All of the states’ MAiD laws contain varying safeguards to ensure that the patient request-
ing assistance in dying is not suffering from depression that impairs judgement. In Oregon and
other states, the physician must also refer the patient for counselling if there is any evidence of
a psychiatric or psychological disorder, including depression, that might impair the patient’s
judgement or ability to make voluntary decisions.32 Hawai’i has taken further steps to ensure
that the patient’s decision is not impacted by severe depression or other psychological problems.
In Hawai’i, when a patient makes a request for MAiD, the statute requires that the patient be
assessed by a licensed mental health professional to ensure that the patient has decisional capac-
ity and is not suffering from depression or other psychological conditions that might impair

26 John Robinson, ‘Baxter and the Return of Physician-Assisted Suicide’ (2010) 40 Hastings Center Rep 15–17
(2010).
27 Alan Meisel et al., The Right to Die (3rd ed 2020) §12.06[A].
28 Oregon Revised Statute § 127.805.
29 Oregon Revised Statute § 127.840.
30 Oregon Revised Statute §§ 127.815; 127.845.
31 ibid § 127.815.
32 ibid § 127.825.

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judgement.33 It is worth noting that, because Montana’s pathway to legalisation does not involve
legislation, physicians in that state who provide lethal medication to patients do not have to fol-
low the procedural and substantive safeguards required by the rest of the states.
Washington was the second state to legalise medical aid in dying, enacting a statute very
similar to Oregon’s Death with Dignity Act. The Washington law arose from a voter ballot
initiative in 2008, and was codified and became effective in 2009.34 As with the Oregon statute,
Washington’s Death with Dignity Act applies only to eligible adults who are terminally ill, have
decisional capacity, and make the requisite oral and written requests.The statute, like Oregon’s
act, requires physicians to inform requesting patients of available palliative options, including
hospice care and pain control.35 From the initial legislative actions in these two states, the rest
of the jurisdictions followed, some as recently as 2019, and it appears that the idea of legalising
MAiD has gained significant momentum in recent years. Legislation to legalise the practice is
currently under consideration in well over a dozen other states.36

Legal status in Canada

MAiD is now expressly permitted throughout Canada. After a judge in British Columbia con-
cluded that the Canadian Criminal Code’s prohibition of assisted suicide violated the Canadian
Charter of Rights and Freedoms,37 the Carter v Canada case was appealed to the Supreme Court
of Canada. That court unanimously concluded that the law banning assisted suicide violates
section 7 of the charter, which states:‘Everyone has the right to life, liberty and security of the
person and the right not to be deprived thereof except in accordance with the principles of
fundamental justice.’38 The supreme court concluded that the prohibition, as applied to compe-
tent adults who consent to the termination of life and have a ‘grievous and irremediable medi-
cal condition (including an illness, disease, or disability) that causes enduring suffering that is
intolerable to the individual’ was inconsistent with section 7.39 This 2012 decision is obviously
very different from the US Supreme Court’s 1997 refusal to recognise inconsistency between
the criminal statute against assisting a suicide, and the protections of the Due Process and Equal
Protection clauses.
On the basis of its interpretation of the charter’s language, the court declared that the relevant
provision of the criminal code was invalid. Section 241 of the Canadian Criminal Code states

(1) Everyone is guilty of an indictable offence and liable to imprisonment for a term of
not more than 14 years who, whether suicide ensues or not (a) counsels a person to die
by suicide or abets a person in dying by suicide; or (b) aids a person to die by suicide.40

33 Haw Laws 2018,Act 2 §§1, 6.

34 Washington State Department of Health, Death with Dignity Act www.doh.wa.gov/YouandYourFamily/Illnessa
ndDisease/DeathwithDignityAct accessed 14 October 2020.
35 Revised Code of Washington 70.245.
36 Compassion and Choices,‘In Your State’, https://compassionandchoices.org/take-action/in-your-state/ accessed
14 October 2020.
37 Carter v Canada (Attorney General), 2012 BCSC 886.
38 Canadian Charter of Rights and Freedoms, section 7, https://laws-lois.justice.gc.ca/eng/const/page-15.html
accessed 18 October 2020.
39 Carter v Canada [2015] 1 SCR 33.
40 Canadian Criminal Code, RSC 1985 § 241.

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The court’s declaration of the invalidity of this section was suspended for a year in order to
allow the federal, provincial, and territorial governments to revise their laws accordingly. Two
additional extensions were also granted to allow provinces and territories further time to adapt
their laws to the holding of the case.
The Canadian federal government was left with a weighty task and a number of unanswered
questions: Should the legislation make access to MAiD broader than what the Supreme Court
of Canada envisioned? What procedural safeguards would be appropriate and what sort of over-
sight system should exist to track the use of MAiD? How should the right of patients under the
charter be reconciled with physicians’ rights to refuse to participate on the basis of conscience?
What should be the impact of this new right on access to palliative care or on the existing right
to withholding and withdrawing life-prolonging treatment?41 The process by which new legis-
lation was adopted reflects careful deliberation and included significant opportunity for various
stakeholders to participate in the legislative process. Professional organisations, including the
Provincial and Territorial Colleges of Physicians and Surgeons, have also developed their own
guidelines for the provision of MAiD. In response to the supreme court decision, the federal
criminal code was amended to provide a legal process for assistance in dying. In the summer of
2015, the federal government appointed an Expert Panel on Options for a Legislative Response.
The reports of other expert panels and committees followed.42
The current version of the federal criminal code, section 241, has the following additional
provision: ‘Exemption for medical assistance in dying (2) No medical practitioner or nurse
practitioner commits an offence under paragraph (1)(b) if they provide a person with medical
assistance in dying in accordance with section 241.2.’The revised code also contains exemptions
from liability for those aiding the medical practitioner, for pharmacists dispensing drugs, for per-
sons aiding patients to self-administer drugs, and various professionals who provide information
about MAiD to patients.43 In the federal criminal code, the term ‘medical assistance in dying’
includes both voluntary euthanasia and prescribing or providing a medication that will enable
the patient to end his or her life via self-ingestion.44

MAiD in the United States and Canada: a comparative overview of provisions

The MAiD legislation in US jurisdictions and in Canada differs in multiple significant dimen-
sions.This brief overview highlights several differences, but does not provide a complete discus-
sion of similarities and differences. In addition to the general statutory features mentioned above,
the statutes legalising MAiD in various US jurisdictions share several common features:

• Patients must be ‘terminally ill’ which is defined as having a survival prognosis of six months
or less.The medical opinion must be confirmed by another physician.
• Only a physician may prescribe medication to end a patient’s life.

41 Jocelyn Downie,‘After Carter v. Canada’ (National Magazine, 24 February 2015) Available at SSRN: https://ssrn
.com/abstract=2670834 accessed 14 October 2020.
42 For a detailed picture of the process by which the new legislation was developed and the public participation
in the details of the law and implementing legislation in the territories and provinces, see Martha Butler and
Marlisa Tiedemann, Carter v. Canada:The Supreme Court of Canada’s Decision on Assisted Dying (Pub No 2015-47-E,
Library of Parliament, 29 December 2015).
43 Canadian Criminal Code, section 241(4), (5), (5.1).
44 Canadian Criminal Code, section 241.1.

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• Voluntary euthanasia is not permitted; patients must be able to ingest the medication inde-
pendently.
• US statutes provide for a 15-day waiting period between the time of the patient’s request
for the medication and the time that the prescription is written.

The Canadian criminal statute includes the following features (with variations in the Québec
legislation noted):

• Patients must have a ‘grievous medical condition’ which is defined as meeting all of the
following criteria: (a) they have a serious and incurable illness, disease, or disability; (b)
they are in an advanced state of irreversible decline in capability; (c) that illness, disease,
or disability or that state of decline causes them to endure physical or psychological suf-
fering that is intolerable to them and that cannot be relieved under conditions that they
consider acceptable; and (d) their natural death has become reasonably foreseeable, taking
into account all of their medical circumstances, without a prognosis necessarily having been
made as to the specific length of time that they have remaining.The medical opinion must
be confirmed by another physician or nurse practitioner (and only by another physician in
Québec). Pending legislation would remove the requirement of ‘reasonable foreseeability’
of the patient’s death.45
• Physicians and nurse practitioners may prescribe medication to end a patient’s life (with the
exception of Québec, which only allows physician prescribers).
• Patients may elect either voluntary euthanasia or to ingest the medication independently
(with the exception of Québec, which only allows voluntary euthanasia).
• The original legislation required a 10-day waiting time between the patient’s signed request
and the day on which the medical assistance in dying is provided.This provision would be
revised to require instead that patients give a ‘final consent’ just prior to receiving MAiD.
• The new legislation would create two tracks – one for patients whose deaths are reasonably
foreseeable and another, with additional safeguards for patients whose natural deaths are not
reasonably foreseeable.46

The US statutes require a finding that the patient is terminally ill with a predicted survival of six
months or less, and this prognosis must be verified by another physician. By contrast, the qualifica-
tion for MAiD in Canada is both more detailed and more open-ended.At no point does the stat-
ute require a specific survival prognosis of six months or less; currently, physicians must only verify
that the patient’s ‘natural death has become reasonably foreseeable’ (and this provision may be
revised as explained above).Although it is often challenging to estimate prognosis accurately and

45 At the time of this writing, the Canadian federal government was working to revise the statute to remove the
requirement that the patient’s death be ‘reasonably foreseeable’ and is considering the removal of other statu-
tory safeguards. Department of Justice, ‘Proposed Changes to Canada’s Medical Assistance in Dying Legislation’
(Department of Justice, 2020) www.justice.gc.ca/eng/csj-sjc/pl/ad-am/index.html accessed 18 October 2020.
The government of Québec recently revised its MAiD laws to be more consistent with those in the rest of the
country. Government of Québec,‘Medical Aid in Dying’, www.quebec.ca/en/health/health-system-and-services
/end-of-life-care/medical-aid-in-dying/ accessed 14 October 2020.
46 Department of Justice,‘Proposed Changes to Canada’s Medical Assistance in Dying Legislation’ www.justice.gc.
ca/eng/csj-sjc/pl/ad-am/index.html accessed 14 October 2020.

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physicians often overestimate expected survival,47 the current Canadian statute gives more flex-
ibility to physicians in determining that a particular patient is eligible for MAiD. In fact, the statute
expressly states that physicians need not estimate how long the patient has to live, a provision that
reflects the inherent clinical uncertainty in most prognostic estimates.48 The latest revisions to the
statute, as explained above, would also permit MAiD for patients whose natural death is not fore-
seeable due to their condition, further expanding the range of patients eligible for MAiD.
The US statutes and the legislation in Québec limit prescribing to physicians only, rather
than permitting other clinicians such as nurse practitioners to prescribe. This has the effect, at
least potentially, of limiting access to MAiD in medically underserved areas. On the other hand,
restricting the provision of MAiD, in whatever form, to physicians avoids concerns about mid-
level providers – that they are less well-trained and may not have the same level of experience
and concomitant medical judgement that should, at least in theory, accompany more rigorous
education. For those who worry about abuses in MAiD – coercion, non-compliance with the
boundaries of which patients qualify, and the like – the restriction to physicians as providers
makes good sense.The fact that most of Canada permits both physicians and nurse practitioners
to provide MAiD reflects the desire to ensure that the option is readily available to all patients
who qualify and who desire it. It may also reflect a level of comfort with the procedure, despite
clearly acknowledging its gravity and finality, which does not exist in the United States.
The broader definition of MAiD in Canada, which includes both voluntary euthanasia and
the self-ingestion option, makes it likely that more patients will be able to elect voluntary eutha-
nasia later in the disease process, when they are perhaps no longer able to manage a glass or straw
or to swallow medication. One criticism of the self-ingestion requirement in the US statutes is
that it may ‘force’ some patients to take the medication sooner than they might otherwise wish
to do so; this is a particular concern for patients with neurodegenerative diseases such as amyo-
trophic lateral sclerosis (ALS, also known as motor neuron disease). Nearly all Canadian patients
who elect MAiD choose voluntary euthanasia over the self-ingestion option.49

Ethical debate: a brief discussion

Despite significant differences in legislative approach to MAiD between the United States and
Canada, scholars and health policy experts in both the United States and Canada recognise the
complexity of the ethical arguments for and against permitting MAiD, however defined. The
implementation of MAiD in both countries proceeds against a background of serious debate
about the ethical appropriateness of the practice, given the profound implications of ending
human life for any reason.
There are two essential layers of ethical debate. First, physicians, ethicists, lawyers, and oth-
ers debate whether it is ever ethically appropriate to hasten a patient’s death with the provision

47 Nicholas A Christakis and Elizabeth B Lamont, ‘Extent and Determinants of Error in Doctors’ Prognoses in
Terminally Ill Patients’ (2000) 320 British Medical Journal 469–473 (finding that, in predicting patients’ remain-
ing life expectancies, physicians were correct only 20% of the time and were over-optimistic 63% of the time and
concluding that a closer doctor–patient relationship was associated with over-optimistic predictions).
48 Barbara A Noah and René Reich-Graefe, Rational Patient Apathy (2019) 49 Seton Hall Law Review 535, 563–
573 (providing a detailed discussion, with a case example, of the operation and effects of clinical uncertainty on
complex medical decision-making).
49 Health Canada, Fourth Interim Report on Medical Assistance in Dying in Canada (2019) www.canada.ca/c
ontent/dam/hc-sc/documents/services/publications/health-system-services/medical-assistance-dying-interim-
report-april-2019/medical-assistance-dying-interim-report-april-2019-eng.pdf accessed 14 October 2020.

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of lethal medication (either via self-ingestion or voluntary euthanasia).Those who support the
practice believe that it is appropriate if the conditions described above are met, i.e. that the
patient is terminally ill with limited life expectancy, that the patient has decisional capacity
and voluntarily requests the lethal medication, and that the physician has received the requisite
requests and documentation and is willing to participate.Those who adopt this view consider
carefully regulated access to aid in dying as one of a variety of options available to physicians to
alleviate suffering at the end of life, and as an important choice for patients who value autonomy
and dignity in their last days.
Some argue that such a practice is never appropriate because the physician’s role is always
to care for the patient, and hastening a patient’s death suggests giving up on the patient rather
than caring for him or her.50 Although physicians have the option of conscientious objection
and no physician can be compelled to provide the medication under any of these laws, those of
this view believe that it is never appropriate for any physician to hasten a patient’s death in this
way.51 The American Medical Association (AMA) has, on this basis, consistently opposed death
with dignity initiatives. In a recent survey of American physicians, 58% of those surveyed agreed
that MAiD should be made legal.52 In an older survey of AMA member physicians, 69% opposed
physician-assisted dying.53
Many physicians who object to the practice also point out that a variety of effective tools are
now available to alleviate the suffering of terminally ill patients. Continuous palliative sedation
to unconsciousness, for example, provides an option to reduce physical suffering in patients at
the very end of life,54 thus rendering MAiD unnecessary (though patients who wish to avoid this
degree of suffering will likely disagree). Moreover, modern medicine offers excellent symptom
management techniques to manage pain, dyspnoea, nausea, anxiety, and other common causes
of patient suffering. Critics of legalising the practice worry that giving patients the option to
determine the timing of their own deaths will diminish the quality of the palliative care avail-
able to them.This concern has not been borne out in practice, according to data compiled in
Oregon and other states which have legalised MAiD. Most of these jurisdictions (but not all)
receive high marks for their palliative care programmes.55
In addition to physician objections based on their healing role, policy analysts and ethicists
have expressed concern that legalising medical aid in dying will result in either self-imposed or
familial pressure on lower-income individuals to take this option in order to avoid additional
costs to themselves or to their families. Critics have also questioned whether patients can truly

50 Leon Kass,‘Neither for Love Nor Money:Why Doctors Must Not Kill’ (1989) 94 Public Interest 25–46.
51 Willard Gaylin et al.,‘Doctors Must Not Kill’ (1988) 259 Journal of the American Medical Association 2139–2140
(‘[I]f physicians become killers or are even merely licensed to kill, the procession – and, therewith, each physician
– will never again be worthy of trust and respect as healer and comforter and protector of life in all its frailty.’).
52 Keith L Martin,‘Medscape Ethics Report 2018: Life, Death, and Pain’ www.medscape.com/slideshow/2018-eth
ics-report-life-death-6011014?faf=1 accessed 14 October 2020.
53 Farr A Curlin et al., ‘To Die, to Sleep: U.S. Physicians’ Religious and Other Objections to Physician-Assisted
Suicide,Terminal Sedation, and Withdrawal of Life Support’ (2008) 25 American Journal of Hospice and Palliative
Care 112–120.
54 Julian JZ Prokopetz and Lisa Soleymanai Lehmann, ‘Redefining Physicians’ Role in Assisted Dying’ (2012) 367
New England Journal of Medicine 97. For more on palliative sedation as an aggressive measure at the end of life,
see Timothy E Quill,‘Dying and Decision Making: Evolution of End-of-Life Options’ (2004) 350 New England
Journal of Medicine 2029–2032.
55 The Center to Advance Palliative Care grades all 50 states on the availability of palliative and hospice care. Oregon
and Washington states both receive an ‘A’ grade. Center to Advance Palliative Care,‘State-by-State Report Card’
https://reportcard.capc.org/ accessed 14 October 2020.

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make a free and informed choice when they are suffering from a severe illness.56 Others fear a
slippery slope that will lead to the inclusion of patients with chronic rather than terminal disease,
and more vulnerable groups including patients with intellectual disabilities or dementia and
patients with serious physical disabilities.57 From there, the argument goes, it is only a further
short slip down the slope to the practice of imposing this option on people who do not wish it,
including physically and intellectually disabled individuals.The statistical evidence of 22 years of
experience in Oregon should go a long way towards addressing these concerns, but they persist
among some in the disability community. Likewise, it should be of some comfort that there has
been no effort, either through the legislature or otherwise, to broaden the class of patients for
whom the option is available or otherwise to stretch the boundaries of the law as it was origi-
nally implemented.
In fact, the data from the US states do not suggest that any of the above concerns are valid. In
Oregon, based on the accumulated data of over two decades of experience with the Death with
Dignity Act, there is no evidence of abuse of the law in the form of coercion of dying patients
or overutilisation by patients suffering from serious psychological impairment. Nor has there
been an avalanche of medically aided deaths following the law’s implementation. As the latest
data from Oregon indicate, the number of patients who utilise this end-of-life option remains
low. During the most recent year for which data are available, 290 patients received a prescrip-
tion after following the law’s requirements. Of these, 188 (including 18 patients who received
the medication the previous year) died after taking the medication prescribed under the Oregon
act.The data also indicate that a growing number of physicians choose to provide this option for
their terminally ill patients. In the most recent report, 112 physicians wrote prescriptions. In the
22 years that the Oregon act has been in effect, physicians have written a total of 2,518 prescrip-
tions and 1,657 patients in total (66%) have taken the medication.58 Overall, in both Oregon and
more recently Washington state, only about 1 out of 1,000 deaths are the result of taking the
lethal medication permitted under the states’ laws.The vast majority of Oregonians who chose
MAiD were above the state average for both income and education levels, and there have been
no reported cases of coercion. In the United States, 53% of patients overall who elected MAiD
were men.59 Although the data cannot capture all abuses and irregularities (for example, evaluat-
ing the quality and thoroughness of a psychiatric evaluation required under the statute in some
cases), the overall picture of the law’s implementation is very positive.
Although pain control was an important concern for many patients who utilised the assisted
dying option, the vast majority of these patients expressed concern about loss of control at the
end of life, being forced to live on beyond the point where they found pleasure in life, loss of
autonomy, and preservation of dignity.60 For these underlying reasons, many patients indicated
that they elected the option because they wished to die at home rather than in hospital. And,
each year, a significant number of patients go through the process of requesting the medication
but choose not to take it and die instead from their underlying illness, suggesting that the sense
of increased control derived from having the option available itself provides a benefit.

56 Kass (n 50).
57 Yale Kamisar,‘Some Non-Religious Views Against Proposed “Mercy Killing”’ (1958) 42 Minnesota Law Review
969; Kass (n 50).
58 Oregon Death with Dignity Act, 2019 Annual Report, www.oregon.gov/oha/PH/PROVIDERPARTN
ERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Documents/year22.pdf
accessed 14 October 2020.
59 ibid.
60 ibid.

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In Canada, preliminary reports indicate similar patterns of utilisation and no evidence of

abuse. The average age of patients receiving MAiD is 72 years, with patients nearly equally
divided between men and women, and cancer is the most common underlying medical con-
dition, followed by neurodegenerative diseases. The data suggest that only about 1.12% of the
total deaths in Canada resulted from MAiD. Most (93%) medically assisted deaths were provided
by physicians rather than nurse practitioners, and these deaths mainly occurred in hospitals and
patients’ homes.61
In the United States, a second layer of ethical debate asks whether, if MAiD is ethically accept-
able (as well as legal), there is any logical or ethical reason to distinguish between MAiD and
voluntary euthanasia (which, unlike in Canada, remains illegal in the United States). Similarly,
is there any logical or ethical distinction between withdrawing life-sustaining treatment (which
does not involve the administration of a lethal causal agent) and death from ingestion of lethal
medication? A thorough answer to these questions is beyond the scope of this chapter, but it is
worth acknowledging that MAiD is just one of many options that might be available to a dying
patient.62 Other end-of-life options also hasten death. Physicians routinely withhold or with-
draw life-sustaining treatment such as ventilator support or dialysis from terminally ill patients,
and adhere to do-not-resuscitate orders when patients go into cardiac arrest. Similarly, they
respect patients’ decisions to stop eating or drinking and so do not resort to artificial nutrition
and hydration.
Moreover, palliative sedation, discussed above, is an accepted practice for which there has
been no evidence of abuse.63 Despite the fact that deep sedation coupled with the withholding
of artificial nutrition and hydration (at the patient’s request or at the request of the patient’s
surrogate decision-maker) will certainly and inevitably result in the patient’s death, most com-
mentators agree that it is an ethically appropriate (and legally permitted) measure to manage
the otherwise intractable suffering of a dying patient.64 Taken in context with other end-of-life
interventions such as these, MAiD is one of a number of options that are available to alleviate
suffering at the very end of life – one that is more carefully regulated than many of the other
options.
Those who defend the practice of MAiD as it is defined in the United States argue that the
line between death from the patient’s voluntary ingestion of a lethal medication and voluntary
euthanasia is well defined and that state laws which permit medical aid in dying will hold against
a slippery slope to voluntary (or coerced) euthanasia. A closer look at this claim suggests that
the ethical arguments about the propriety of various end-of-life practices blur the boundaries
of these practices – but, so far, the line has held.Although US law in a few states permits MAiD
and no state permits voluntary euthanasia, many of the ethical arguments in support of medi-
cally assisted dying and other end-of-life practices provide similar support for the practice of
voluntary euthanasia. Moreover, other end-of-life practices, such as palliative sedation, have a

61 Health Canada, Fourth Interim Report on Medical Assistance in Dying in Canada (April 2019) www.canada
.ca/content/dam/hc-sc/documents/services/publications/health-system-services/medical-assistance-dying-int
erim-report-april-2019/medical-assistance-dying-interim-report-april-2019-eng.pdf accessed 14 October 2020.
62 For a thorough treatment of the moral and ethical issues embedded in a range of end-of-life interventions, see
David Orentlicher, Matters of Life and Death (Princeton University Press 2001).
63 ibid 49.
64 Bernard Lo and Gordon Rubenfeld, ‘Palliative Sedation in Dying Patients’ (2005) 294 Journal of the American
Medical Association 1810–1816.

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similar practical effect – hastening the patient’s death – with far less legal oversight.65 All of
these practices nevertheless benefit from clinical criteria and guidelines to assist physicians with
decision-making and practice in caring for the dying.66
Among those who support MAiD, some advocate an expansion of the category of patients
who can request and receive such assistance, suggesting that more end-of-life choices are always
better than fewer. For pragmatic reasons, however, those who believe that there is no ethical
difference between a physician’s providing a patient with a lethal dose of medication which the
patient then ingests and injecting the patient with a lethal dose of medication should never-
theless recognise that legalising the latter action will be far more problematic than the former.
Unless a patient clearly has decisional capacity, the slippery slope concerns described above
become arguably more pronounced with voluntary euthanasia because the last, volitional act
of the patient no longer exists to serve as a bulwark between the physician’s action and the
patient’s wishes. The informed consent of the patient, documented in writing and witnessed
(as required by Canadian law), would be an essential safeguard. On the other hand, the self-
administration requirement of the Oregon law and other US MAiD laws impacts the ability of
those with degenerative neurological conditions such as ALS to utilise the assisted dying option
because these patients may have difficulty swallowing the medication. For this reason, the self-
administration requirement creates, for some patients, the unwelcome choice between taking
the medication ‘early,’ before they really wish to end life and risking that they will have to forego
the option entirely later.
All of these distinctions among various end-of-life options, whether well-defined and ethi-
cally distinguishable or not, illuminate the broader and far more important question, which is
how physicians can respect the needs and wishes of each individual patient at the end of life.
There is, of course, no uniform answer to this question, and it becomes yet more difficult when
one considers that physicians have varying moral and religious views about their appropriate
role in caring for dying patients and alleviating suffering. Public debate in the United States
about MAiD outside the realm of experts tends to reflect a very limited understanding of the
applicable laws and their limits and therefore tends to oversimplify the issues. Some citizens
argue that more choices or more control at the end of life is always better, while others take
the position that it is always wrong to hasten death, commit suicide, or otherwise interfere with
nature, or divine will. In fact, there is far more nuance to end-of-life choices than the public
generally appreciates (or than physicians necessarily think about explicitly).As both the United
States and Canada have learned, legal rules only begin to address (and quite inadequately) the
complexity of end-of-life choices. Even so, one might reasonably conclude that regulation of
such practices, out in the open, is preferable to unregulated, silently tolerated assisted dying or
voluntary euthanasia. One survey suggests that at least 6% of US physicians have complied with
requests for assisted suicide or voluntary euthanasia at least once.67 The fact that some physicians
are willing to accede to such requests even when not permitted by law is troubling, but unsur-
prising. Further public debate and legalisation of practices which have the support of citizens
and healthcare providers make good sense under the circumstances – it is the only means in a
democratic society to allow all voices to be heard, to try to establish some form of consensus and

65 David Orentlicher, ‘The Supreme Court and Physician-Assisted Suicide: Rejecting Assisted Suicide but
Embracing Euthanasia’ (1997) 337 New England Journal of Medicine 1236–1239.
66 For example, David Orentlicher et al.,‘Clinical Criteria for Physician Aid in Dying’ (2016) 19 Journal of Palliative
Medicine 259–262.
67 Diane E Meier et al., ‘A National Survey of Physician-Assisted Suicide and Euthanasia in the United States’
(1998) 338 New England Journal of Medicine 1193–1201.

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compromise, and to provide terminally ill patients with access to critical end-of-life care that, at
least in principle, has the potential to align with their autonomy and dignity as human beings.

Some fnal thoughts and observations

The evidence of more than two decades of experience in Oregon and 10 years of data from
Washington state suggests that legalised MAiD provides an appropriate and ethically acceptable
choice to patients who desire it and who qualify under the narrowly drawn statutory guidelines.
Even so, caution is warranted in applying these conclusions to other countries which may not
have equivalent access to healthcare and other safeguards for the elderly. No physician is required
to participate in the practice if it violates his or her religious beliefs or conscience. In US reports,
there is, so far, no evidence of abuse, coercion, or expansion of the practice beyond the legally
limited class of patients who are terminally ill and retain decisional capacity. Likewise, there is
no evidence of disproportionate utilisation by the poor, uneducated, or uninsured. Palliative care
is not always effective and, for some patients, the prospect of being forced to endure terminal
illness until the very end when they no longer find meaning or enjoyment in life may be unac-
ceptable.68 For all of these reasons, if the principles of patient autonomy and dignity as reflected
in the Universal Declaration of Human Rights, the Canadian Charter of Rights and Freedoms,
and the US Constitution are to have their fullest meaning from the perspective of individual
patients whose preferences and beliefs vary, carefully legalising limited versions of MAiD seems
entirely appropriate.
Both the United States and Canada have taken steps to legalise medical aid in dying, and
both countries demonstrate a serious commitment to care for dying patients. Perhaps the most
striking difference between the two countries is that Canadian MAiD legislation includes an
option for voluntary euthanasia – something that seems unlikely to be met with acceptance in
the United States, whatever the opinion polls might say.The nationwide legalisation of MAiD
in Canada, and the inclusion of voluntary euthanasia within the meaning of that term, reflects
a political and legal system that is both structurally capable of sweeping change and cultur-
ally willing to, first, adopt public positions and debate compromises and, second, accept such
change, albeit with appropriate caution. In the United States, although it is structurally possible
to implement a nationwide law permitting MAiD, the path that Canada took – recognising
the right to MAiD as protected by the federal constitution – is not likely to happen. The US
Supreme Court took up the question in 1997 and found that state statutes that broadly crimi-
nalise assistance in a suicide do not offend the Constitution. It is unlikely that the Court will
revisit this question, especially in these politically polarised times. And while it is structurally
possible for the US Congress to enact a federal law legalising the practice of MAiD in all states,
this, too, looks politically unfeasible given the vocal and well-represented presence of conserva-
tive religious groups in the United States which oppose the practice. One should never say
‘never’ – it was surprising to see, for example, the nationwide legalisation of same-sex marriage
via a US Supreme Court decision after years of conflict over the question and in the context of
some states having legalised it.69

68 Lamar W Hankins,‘Is Medical Aid in Dying a Human Right? Another View, Hastings Center Bioethics Forum’
(Hastings Center, 19 December 2019) www.thehastingscenter.org/is-medical-aid-in-dying-as-a-human-right
-another-view/ accessed 14 October 2020.
69 The US Supreme Court, in Obergefell v Hodges, 135 S Ct 2584 (2015) held that the right of same-sex couples
to marry was protected by both the Due Process clause and the Equal Protection clause of the Fourteenth
Amendment. The vote of the nine-member Court was 5:4. On 17 May 2004, Massachusetts became the first

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Challenging ethical questions will always remain in matters of life and death. In Canada,
where voluntary euthanasia is legal, scholars and policy experts are facing these questions head-
on. Can patients with early-stage dementia request euthanasia when they reach a specified
point of physical and intellectual deterioration?70 Can a patient refuse unwanted medical care
in order to propel himself or herself into a ‘terminal’ condition that would qualify for assistance
in dying?71 Although the Canadian statute requires patients to be suffering from an illness that
causes ‘enduring physical or ongoing psychological suffering that is intolerable to them’ and
whose ‘natural death has become reasonably foreseeable,’ should the option of assisted dying be
made available to patients whose sole disease is a psychiatric disorder?72 Canadian health law
and policy experts, and the Canadian public, continue to wrestle with these questions, as will
American experts and the public, should the expansion of MAiD open the door to broader
categories of qualified patients or to practices such as voluntary euthanasia.
In the end, the United States is and will likely remain a much more divided nation, politically
polarised, and so often paralysed and unable to develop consensus. Even reaching a consensus
about the obligation of a responsible federal government to provide appropriate healthcare to
all residents, in line with universal human rights, seems out of reach at this moment.Within the
broader realm of ‘healthcare,’ care for the dying in the United States does not include access to
MAiD for all.The United States does not even offer access to healthcare for all.Whatever any
individual patient, physician, or legislator may think about the ethical propriety of MAiD, it
remains, for some, a desirable and crucial option, particularly when the best palliative care efforts
fall short of providing acceptable symptom relief, or when the patient determines that quality
of life has become unacceptable.

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385
 PART C

The application of a universal right to

health in practice
 22
A RIGHT TO HEALTH
A right granted and agreed, but limited or denied?

Clayton Ó Néill and Charles Foster

Introduction
This Handbook attempts to define and explore that which some might say is beyond the
bounds of definition or exploration. For is there any such thing as a real right to health? And if
not, surely one cannot define or explore something that does not exist. Certainly, many aspire
to create a world in which there is a right to health; but perhaps (say the cynics) this is dreamy
utopianism. Much of this book, we admit, is a catalogue of utopian aspirations. It lays bare
the embarrassing dichotomy between the right to health asserted by international treaties and
human rights norms and the practical reality. The reality is that the translation of these rights
in respect of healthcare, access to treatment, assurance of patient safety, and equitable and pro-
portionate use of resources is patchy. Rarely do we see systematic and disciplined national or
international implementation of any aspect of a global health right.
This concluding chapter seeks to summarise the main contentions of the individual chapters,
to identify any common ground between the approaches adopted by the various jurisdictions,
to identify obvious lacunae in the provisions that purport to grant a right to health, to identify
the shortcomings in the implementation of those provisions, and to suggest ways in which the
substantive, procedural, and political deficiencies relating to the right might be addressed. At
the beginning of the book we asked: Does a universal right to health exist in practice? This chapter
attempts an answer.
No one book could begin to deal comprehensively with global health rights, and we cer-
tainly have not tried to do so.There are some glaring geographical omissions, for instance, and
in a book primarily concerned with the law, we cannot interrogate satisfactorily, even for one
jurisdiction, the policy and governance considerations that play such an important part in mak-
ing any human right real. All that we can do is to set out a few statements of national and inter-
national aspiration and a few national case studies, make some observations about how things
might be done rather better than hitherto, and hope that these will provide the seeds for the
national and international conversations from which real change will eventually flower.
We now revisit briefly and critically the individual chapters.

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 Clayton Ó Néill and Charles Foster

Part A
In Part A, Charles Foster and Jonathan Herring outline the relationship between the Universal
Declaration of Human Rights (UDHR) and the right to health. Charles Foster focuses specifi-
cally on Articles 1, 2, 3, 5, and 6 of the UDHR. He links his analysis of Article 1 to the Imago
Dei and argues that this article influences other UDHR articles and related instruments. Foster
sees Article 1 as informing and informed by the notion that each human life constitutes a
story – a story that can be improved by the infusion of qualities such as dignity, freedom, con-
science, egalitarianism, and lack of discrimination. Foster argues that legal instruments such as
the UDHR should facilitate egalitarianism. He discusses the question of whether a right to life
should be subject to any (and if so what?) limitations, and sets out what the General Gomment
of the UN Human Rights Committee says about what amounts to arbitrary deprivation of life.
He considers what the UDHR says about the liberty and security of the person, and considers
the scope of the concomitant duties.A central contention of this book is that rights entail duties,
and states are accordingly duty-bound to protect rights or, at the very least (in the case of a right
to life), to ensure that they do not arbitrarily engage in actions that result in the deprivation of
life.The General Comment frames the relevant duty very broadly. Foster contends that assisted
suicide is a ‘classic example’ of the tension that can exist between the right to life and the rights
that are classically said to be spawned by autonomy. While acknowledging that autonomy is a
crucial principle, Foster observes that it is widely recognised that states should take measures to
prevent suicide, particularly within vulnerable constituencies. He links Article 3 of the UDHR
to discussions about end-of-life issues that are more usually articulated (at least in Europe) in
the language of the European Convention on Human Rights (ECHR). He goes on to deal with
abortion, consent to medical treatment, and the provisions of UDHR Article 7. He considers
Article 6 of the UDHR and the right to be recognised everywhere as a person before the law.
He concludes that some of the potential of Article 1 of the UDHR has been realised, but he
considers its influence to be ‘piecemeal.’ He is concerned that a right to health is only conferred
by the UDHR through Article 25, and that the scope of Article 1 as a tool for fashioning health
rights has been more limited than it need be. Foster concludes that the jurisprudence that has
encrusted the UDHR has not asked, let alone answered, the question ‘what is health?’ He is
concerned that dignity is not the main motive force of the UDHR, and calls for dignity to be
‘given some hard edged meaning.’
Jonathan Herring continues the audit of the UDHR’s relevance to the right to health, assess-
ing the impact or otherwise of Articles 7, 12, 16, 18, 19, and 25. He focuses on equity and inequity
as ethical justifications for a right to health, considering the bulwarks against inequity contained
in international human rights treaties/documents, including the International Covenant on
Economic, Social, and Cultural Rights (ICESCR) and the Committee on Economic, Social and
Cultural Rights (UNCESCR). Herring argues that a right to health is a key component of a
number of other rights. He argues that ‘if there is no human right to health, it is not clear there
can be a human right to anything.’ He supports this contention by reference to the wording of
Article 7 and the potential overlap between Articles 2 and 7. He compares the fight for health
rights to the fight against gender inequality, race discrimination, and disability discrimination,
and discusses how the notion of equality can be used to develop a broader view of the right
to health. He discusses the notion of rights as based on the idea of the individual, and moves
on to consider collective understandings of rights. He suggests that the right to equality man-
dates a positive duty. He concludes that the equality right enshrined in Article 7 can only be
honoured if there is a right to health – a right articulated both as an individual and a collective
right. Article 12 is formulated in negative terms. It prevents the state from interfering with an

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individual’s life. Herring observes that at first sight this negative formulation would appear to
debar Article 12 from conferring any positive right to health. But for Herring, that is not the
end of the story. He notes that privacy (the prime example of an interest protected by Article 12)
means more than merely being left alone, and shows how ill health can impede a person’s ability
to experience relationships and flourish accordingly. Privacy, therefore, says Herring, ‘generates
a right to health.’ Article 12 also protects honour and reputation, which Herring argues can be
regarded more generally as the protection of dignity. For Herring, many aspects of human life
are crucially connected with ‘health’ – from which it follows (for instance) that protection of
honour and dignity might go at least some of the way towards creating a positive right to health.
In his analysis of Article 16, Herring identifies the elements of the right to found a family,
suggesting that they include rights of access to assisted conception, contraception, and abortion.
Herring considers Articles 18 and 19 together.They relate to freedom of thought, conscience,
and religion (Article 18), and freedom of opinion and expression (Article 19). In the health
law, the main relevance of these articles is to conscientious objection. Herring views conscien-
tious objection through the lens of moral integrity, and discusses other ways in which it can
be viewed. This discussion has parallels with Clayton Ó Néill’s analysis of this area in Part B.
Herring’s conclusions bear repeating:‘[w]e should be seeking to produce a healthy society.This
is one where society seeks to promote the equality of all; to recognise the value and dignity of
every human being; that enables relationships to flourish.That is true health.’
This sets us on the road to this book’s destination.We conclude that a right to health has an
inalienable place in the pantheon of universal rights.The right is incontestably present in vari-
ous august legal instruments, and seems to be valued as an ethical norm in many jurisdictions.
But, (as Herring demonstrates) a right to health is allied with, and indeed may be derived from,
other rights.Those alliances are crucial.Without them, a robust-looking right to health might
be impotent.
Many of the chapters in this book make (sometimes tangential) reference to the current
(2020) COVID-19 pandemic, and describe the impact that such pandemics have on both access
to appropriate healthcare and the application of a right to health in such contexts. Clayton
Ó Néill focuses specifically on the correlation between global health emergencies and a right
to health. His perspective is global. He considers the effectiveness or otherwise of the responses
to health crises, and highlights the disconnect there often is between international action and
advice and national action. Ó Néill traces the history of the idea of a right to health. He accepts
the World Health Organisation’s constitution’s definition of health (‘a state of complete, physical,
mental and social wellbeing and not merely the absence of disease or infirmity’) and endorses
Article 12 of the ICESCR which purports to confer a global right to health. He notes that
civil and political rights tend to be protected in a more concrete way than economic, social,
and cultural rights. He refers to the literature on the relationship between globalisation and
economic, social, and cultural rights. He highlights Ssenyonjo’s work on factors such as cor-
ruption, failure to comply with national court rulings, poverty, and lack of respect for the rule
of law and international bodies1 which, in Africa (and elsewhere), impact adversely on human
rights generally. Ó Néill agrees with Ssenyonjo that improvement of the ICESCR’s impact is
contingent upon the setting up and application of a large range of economic and educational
policies, and discusses the connection between justice and the right to health. Ó Neill alludes to

1 Manisuli Ssenyonjo, ‘The Influence of the International Covenant on Economic, Social and Cultural Rights’
(2017) 64 Netherlands International Law Review 259–289; Manisuli Ssenyonjo, Economic, Social and Cultural Rights
in International Law (Hart 2016).

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other international human rights treaties that have an impact upon health rights, and agrees with
Gostin that the global response to health inequality is inadequate in many important respects.
Ó Néill considers de Campos’ thesis that health needs can be classified as either basic or non-
basic, and sets out some of the lessons from global responses to medical crises – particularly in
the context of Ebola. Everyone seems to applaud the idea of a right to health, but there is less
national and international enthusiasm for the work and resources necessary to make such a right
real.The right is only useful very patchily.
Thana de Campos-Rudinsky notes that a right to healthcare gives rise to two types of duty
on the part of states: a duty of immediate realisation (sometimes referred to as a minimum
core obligation) and a duty of progressive realisation. The nature and scope of these duties
have been widely discussed in the literature, particularly in the context of the ICESCR and
the UNCESCR. It is crucial, says de Campos-Rudinsky, not to confuse these two types of
rights. The distinction matters mainly because, as their name suggests, minimum core obliga-
tions should be realised immediately. If they are conflated with duties of progressive realisation,
the priority they should have may be diluted. De Campos-Rudinksy illustrates the distinction
between the two types of rights by reference to health cases decided by the Inter-American
Court of Human Rights (IACHR) of the Organisation of American States. Sometimes, she sug-
gests, the IACHR itself fails to acknowledge the distinction.
Throughout this book, we have noted how the practical realisation of global health rights
falls short of the aspirations voiced by advocates and embodied in the relevant declarations.
De Campos-Rudinsky’s analysis suggests, persuasively, one reason why this might be.

Part B
Beginning of life
Zahara Nampewo examines alternative reproductive technology (ART) in Uganda.The absence
of a public health scheme means that ART is generally only available privately. In vitro ferti-
lisation (IVF) is largely unregulated. Nampewo identifies a lacuna in Ugandan law regulating
ART. She connects the right to found a family to the UDHR, Article 16 – a right reflected in
the constitution of Uganda. She outlines the new ART techniques and cites case law, particu-
larly from the UK, concerned with their regulation. She discusses the legal status of ART in
Africa more broadly. She details some of the religious and cultural objections that often apply
to ART, dealing specifically with the issue of clan continuity and the primacy often given to
males, and noting that infertility may lead, inter alia, to stigmatisation, isolation, ostracisation,
and disinheritance. Nampewo sees the absence from Ugandan law of provisions regulating ART,
together with the paucity of resources to pay for ART, as having important negative social
implications. But there is perhaps some hope: a recent and encouraging draft policy. Regulation
of ART practice, Nampewo argues, will not be enough: community education is crucial too.
Nampewo’s discussion of ART in relation to issues such as cost, general trends and patterns,
regulation, infrastructure, donors, and surrogates resonates far beyond Africa. She contends that
society must recognise that childlessness is not just a social or a personal medical problem, but
also a public health issue.
Clayton Ó Néill deals with the issue of abortion, not, as is usual, by examining the diverging
paradigms of the embryo’s/fetus’ right to life and the mother’s right to choose, but rather by
examining healthcare practitioners’ right to object on grounds of conscience to participating
in abortion in the context of the recent implementation of the Abortion (Northern Ireland)

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Regulations 2020. He outlines the chronology of the change in the law and explains that for
many in Northern Ireland these changes represent a repudiation of fundamental values. He
questions the consultation process undertaken before the implementation of the regulations.
This process was limited in both scope and time, and contrasts unfavourably with the Citizens’
Assembly which, when the Republic of Ireland was contemplating a comparable change in the
law, engaged stakeholders more effectively. Ó Néill notes an English case, Janaway2 and a Scottish
case, Doogan,3 which affected the way that conscientious objection to abortion was grafted into
the new law in Northern Ireland, but he observes that it was not legally mandatory to imple-
ment the principles enshrined in Doogan. He acknowledges that many consider that a right to
abortion services is an important right, but argues that ,nonetheless, the right to act as con-
science dictates is important too, and must be defended. Ó Néill criticises the narrow definition
of ‘participate’ in the new Northern Ireland regulations.

Middle of life
Cheluchi Onyemelukwe examines the concept of universal health coverage (UHC) and the
right to health in Nigeria. She describes UHC’s legal foundations and sets out her belief that
health systems should aim to be preventive, promotive, and rehabilitative and should not depend
on an individual’s ability to pay. Onyemelukwe cites different forms of legislation, conven-
tions, and charters, all of which purport to create and regulate, directly or indirectly, a right to
health in Nigeria, but she recognises that the practical reality may fall short of the aspiration.
The Nigerian Constitution does not clearly identify a right to health as a fundamental right. It
provides a right to medical facilities but that, according to Onyemelukwe, is narrower than the
right to health.The problem may be primarily the absence of a robust regime for enforcement
of UHC. Onyemelukwe outlines recent legal developments which have implications for the
right to health and UHC. Adoption of the African Charter as part of domestic law creates an
assumption that the right to health is ‘or at least ought to be enforceable in Nigerian courts.’ She
discusses whether the right to health is justiciable. Case law indicates that the African Charter is
not being used as it might be to make UHC real. Lengthy delays in bringing cases to a conclu-
sion undoubtedly make UHC less accessible than it should be. Social health insurance, which
falls short of national free healthcare but is within the financial reach of both the country and
individuals, could form part of the solution. More data about the need for and access to are
needed. There is already evidence, though, that very few Nigerians are covered by any form
of health coverage and for most people, user fees/out-of-pocket payments are the main ways
of paying for healthcare. Onyemelukwe observes that the right to health is a precursor to ‘the
enjoyment of all other rights.’ This is, of course, applicable to all jurisdictions. Onyemelukwe
describes the role of the National Health Act 2014 as the primary statutory enactment dealing
with health service delivery, and refers to case law characterising a basic minimum package of
healthcare as a right enforceable in the Nigerian courts.
Lara Khoury looks at the link between public reporting of safety indicators and the strength-
ening of patient autonomy and concludes that, counter-intuitively, the link, at least in Quebec,
is not strong. She concludes that the main effects of improving the reporting of patient safety
indicators are on safety and healthcare provision and delivery (all of which are improved), but

2 Janaway v Salford Area Health Authority [1989] AC 537 (HL).

3 Greater Glasgow Health Board v Doogan and Another [2014] UKSC 68.

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that the effects on patient autonomy are small. Patients in the United States (and increasingly
elsewhere) are seen as consumers of healthcare. Quebec does not (yet) have that consumer-
ist ethos, but it is nonetheless apparent from the research analysed by Khoury that patients in
Quebec have, at the very least, some voice in the treatment they are given and in the decisions
that are made for them.That is not the case in all jurisdictions.
Santa Slokenberga discusses – primarily in the Swedish context – the obstacles preventing
the provision of optimal medical care, particularly for children and for those who are otherwise
vulnerable or lack capacity. Decisions made in respect of gravely ill children are particularly
problematic. Slokenberga links the protection and violation of human integrity to the European
Court of Human Rights (ECtHR). She notes that Article 12 of the ICESCR (buttressed by
articles within the Biomedicine Convention of the Council of Europe) purports to create a
right to a high standard of health. But how does one determine, in any particular context or
jurisdiction, what a high standard really demands? Health rights cannot intelligibly be disen-
tangled from social rights, rights to housing, water, and so on. Can any international instrument
really prescribe justiciable standards in relation to such matters? Slokenberga traces, from 1922 to
the present, the evolution of the ethos that governs the doctor–patient relationship.The modern
ethos owes a lot to evidence-based medicine – a conception that does not necessarily conduce
to optimal patient care. It can become a mantra that inhibits reflective practice and/or makes
the clinician focus too narrowly on a clinical problem rather than, holistically, on the patient in
the context of society or other vital and perhaps defining relationships.There are also, of course,
well-documented difficulties about deciding what the ‘best’ evidence is. Slokenberga concludes
that four key components relate to the right to health. Care must be (1) available, (2) accessible,
(3) acceptable, and (4) of appropriate quality.
Jean McHale and Elizabeth Speakman address the question of whether ‘health tourism’
should be countenanced. They explore the vexed question of the National Health Service
(NHS) charging overseas ‘visitors,’ such as workers, tourists, and temporary residents, and the
differences in approaches taken to such charging across the devolved countries in the UK.They
advocate a policy based on what is equitable and proportionate.They situate healthcare in terms
of fundamental human rights to health and healthcare and the question of equitable access to
treatment. Equity and proportionality depend on context; therefore, McHale and Speakman
examine the regimes for charging for healthcare that apply in the various UK jurisdictions, not-
ing which citizens are exempt from NHS charging, and the provisions that apply to immigrants.
They analyse the diverse approaches taken in the devolved countries – something which has,
to date, been largely hidden in the literature. While England has been particularly notable in
the last half-decade for its tightening of both the charging regulations and their implementa-
tion, in Scotland and Wales, in particular, the regulations have been more generous in scope
and implementation. McHale and Speakman highlight how the existence and operation of the
current charging regulations can act as a deterrent to those seeking treatment as, for example,
in the context of accessing maternity care.They demonstrate that, despite the years of distinct
approaches, a chiller wind now blows through the devolved countries and pressure to change
course in relation to charging policy is now growing.They pose the question: ‘how can com-
passion and care and concern for an equitable right to healthcare be effectively squared with
charging vulnerable visitors for treatment?’This question is juxtaposed with another: ‘How far
should the concern with resource allocation extend?’There, of course, lies the rub! In the spirit
of wanting to extend a right to health to all, some countries may be more generous than oth-
ers in terms of permitting access to healthcare. But this broadening of access can have serious
economic consequences for a country. So, while a right to health might exist, the question of a
right to travel to access healthcare is complex. We suggest, following McHale and Speakman’s

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arguments, that policies should be devised and implemented that set out the rights, duties, and
obligations applying to those who seek medical treatment and to those who might provide it.
Such policies should be equitable and proportionate: adequate medical care should be available
to all, but its provision must be financially sustainable and rationally balanced against competing
priorities. Harmonising the realisation of such ideals across international borders would, if it is
not to perpetuate and deepen divisions between nations, demand sophisticated and nuanced
consideration.
Naomi N Njuguna sees patient safety in Kenya as related both to a substantive legal right
to health, and to effective governance of health systems. She identifies some causes of patient
harm (illustrating several by reference to litigated cases) and locates these legally within the
framework of the Constitution of Kenya. She suggests that patients will be safer if there is a
unified and holistic governance structure, and that the needs of healthcare workers have been
sidelined, particularly in the context of the COVID-19 pandemic. Provision of healthcare, she
says, must be aligned with the proper resourcing and remuneration of healthcare professionals,
and the provision of appropriate working conditions. Patient safety is a holistic idea – holistic in
terms of its view of patient needs and its view of the factors that contribute to health: it means
more than the mere avoidance of errors. Njuguna essentially joins Peled-Raz in calling for an
approach to patient safety grounded in the notion of patient care infused by human rights, and
suggests that, in Kenya, the idea of patient safety should be situated within the framework of a
right to health which ‘entails holding the state responsible for governance outcomes that influ-
ence patient safety.’
John Tingle continues, in the context of English law, the discussion about the relationship
between patient safety and a right to health. He concludes that ‘a country cannot maintain that
their citizens have a right to healthcare if those services are unsafe and ineffective.A human right
to healthcare is meaningless if safe and quality healthcare is not viewed as a core component of
it.’ He derives this conclusion from analysis of many sources. He suggests that patient safety is
still a challenge to the NHS, but that existing patient safety strategies, informed by the lessons
that can be learned from other jurisdictions, are promising.
Stephen King examines the system of clinical negligence litigation in England, asking
whether the system implies the existence of a right to health.The argument is alluring. If there
is a publicly funded healthcare system, surely this itself is evidence of a domestically recognised
right to health – for healthcare and health have an obvious connection. If the healthcare system
fails an individual, can the system of redress (intended, if the claim is brought in tort, to put the
claimant in the position she or he would have been in had the negligence not occurred) not be
seen as a further buttressing of the state-sponsored right to health(care)?
Helen Hughes completes the series of three complementary chapters dealing with patient
safety – the others being by John Tingle (who focuses on the history of the patient safety
concept, the procedures that emerged in the course of its evolution, and the flaws in those
procedures) and Stephen King (who outlines the English system of clinical negligence, and
asks whether it helps to promote patient safety). Hughes asks whether the right to health under
Article 12 of the ICESCR connotes a right to safe care, contending compellingly that it does.
She sees the ECHR as one of the main European agents of the ICESCR, and notes that the
ECHR (particularly in relation to the right to life, the right to liberty, and the right not to be
tortured or treated in an inhuman or degrading way) establishes a close relationship between
reducing avoidable harm and upholding basic human rights. She embarks on an (often depress-
ing) audit of the way in which the UK falls short of its obligation to provide adequate healthcare.
She concludes that the World Health Organisation’s (WHO) Global Patient Safety Action plan
could, if properly adopted and enacted by individual states, make real, in the wards, the clinics,

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and the operating theatres, the link (clear in the ICESCR) between the right to health and the
right to safe care.
We often associate a right to health with a right to medical treatment, medicines, and care.
But it connotes much more than that. Perhaps it originates with a right to dignity. Sushant
Chandra agrees. He sees dignity as Kant saw it. Chandra examines the way that healthcare dis-
putes are adjudicated in India, demonstrating, by reference to judgements of the supreme court,
how dignity is seen as a foundational constitutional principle mandating respect for individuals.
Chandra cites a number of cases of failure to treat patients appropriately in public hospitals,
and where the sanctity of human life and dignity were insufficiently recognised.‘[J]ust because
someone is poor,’ he observes,‘the State cannot allow him to die.’ He continues:‘after all, health
is not a luxury and should not be the sole possession of a privileged few.’This goes to the heart
of healthcare provision in India and elsewhere: a right to health may exist theoretically, but its
realisation is often dependent upon money and access to financial resources. Chandra urges the
Indian courts to identify more explicitly the relationships between autonomy and dignity and
between dignity and equality.That, he contends, would empower the notion of dignity, making
it a more useful agent of legal accountability.
Edward Lui considers how a right to health operates or does not operate in Hong Kong. He
demonstrates that it has an equivocal place amongst constitutional rights, and is insufficiently
protected by the common law. He examines two recent government policy documents relating
to health and public assemblies, contending that in these policies the government has attempted
to balance the right to health with other conflicting rights. Lui examines current restrictions on
the freedom of assembly and considers whether or not they have helped to entrench or boost
the right to health. He notes that the Hong Kong courts rarely recognise the suite of ICESCR
rights which include a right to health. He concludes that the Hong Kong government has
shown some signs of wanting to recognise a right to health, but that balancing this right with
others is proving difficult. Lui considers that a meaningful right to health in Hong Kong would
require coordinated public demand.As it stands,‘a general right to health in Hong Kong remains
an aspiration only.’

End of Life
Barbara A Reich reviews the ethical and legal foundations of controversial medical practices,
including euthanasia and medical aid in dying (MAiD) in the United States and Canada. She
explores how cultural differences have affected the availability of MAiD. She relates its availabil-
ity to the UDHR and to the priority given to the principle of patient autonomy. She notes and
assesses the significance of the changing language used to describe various end-of-life practices:
‘physician-assisted suicide’ has morphed into ‘medical assistance in dying.’ She relates end-of-life
issues to the varying political landscapes in North America, and surveys the legal mechanisms
used to enable assisted dying where it has been permitted, the evidence for the effect of such
laws on the doctor–patient relationship, and the North American experience as to whether
slippery slopes to involuntary euthanasia are real and unavoidable. Reich is troubled by the
inconsistency of the position in relation to assisted dying across the United States. She contends
that it is an option that many people may need irrespective of the political realities of the state in
which they live. If, then, a right to assisted dying is part of a right to health, its patchy availability
is an example of the inconsistent availability (even within one nation) of the right to health.
Ian Freckelton considers the way that end-of-life issues have been approached in vari-
ous Australian jurisdictions and in New Zealand. He notes the relationship between popular
and legal debates about the withdrawal and withholding of life-sustaining treatment with the

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debates about physician-assisted suicide and euthanasia. He asks whether the legislation has done
enough to reduce suffering and to give people autonomy at the end of their lives, whether the
‘beneficence culture’ of medicine has been protected, and whether doctor–patient relationships
have been compromised. He relates the history of assisted dying law in the Northern Territory,
Victoria,Western Australia, and Queensland. He highlights the role of Lucretia Scales in trying
to ensure lawful access to physician-assisted suicide in New Zealand. Her story personalises a
debate that is often abstract.
Freckelton shows that when assisted dying is legally possible, few avail themselves of it.This
may relate to the strict eligibility criteria or to other factors. It may also, however, relate to the
fact that many people cling tenaciously to life, even – or perhaps particularly – when it is clear
that the end is near. It appears that there is a general movement towards supporting people in
their end-of-life choices, but autonomy is not the only player in town.
Freckelton’s chapter invites, as did Reich’s, the question of whether a right to assisted dying
should be an element of an inalienable global right to health.We return to this issue below.
Jesse Wall considers the question of whether global health rights should cover human tis-
sue. He suggests that we may not have any right to own our own body in life or in death. He
discusses the legal and ethical nature of human tissue and the legal schemes which govern its
posthumous use – particularly in relation to organ donation.Wall observes that the global trend
in respect of the use that can be made of human tissue is to give primacy to the wishes of the
person to whom the bodily material belongs or belonged. He notes that Article 3 of the UDHR
often features in debates about the use of human tissue. He accepts that Article 3 might have a
contribution to make, but that the consequences of seeing the use of human tissue as purely a
human rights issue are unacceptable. Human rights, for Wall, embody values – which demands
analysis of how they should be crystallised in social and legal rules – and also act as standards.
These two characteristics of human rights are often insufficiently distinguished, leading to ambi-
guity about the way that their status is represented in legal discourse. Wall demonstrates how
researchers link human rights to moral sensibility, but concludes that this misrepresents the
relationship we have with our bodily material. Instead of adopting an approach based on our
sensibility, Wall asks whether the approach should instead be that of solidarity. This is akin to
Herring and Chau’s idea that our body does not belong only to us.4 Wall suggests that we can
only talk intelligibly about our bodies belonging to ourselves when the body is ‘integrated with
our subjectivity’ – which it is not when we are dead. It follows, for Wall, that if others can benefit
from our dead body, those benefits should weigh (although not necessarily decisively) against
our own wishes and those of our families.Wall recognises that the law is a blunt instrument for
dealing with human bodies – which possess ‘subtle layers of meaning’ – and argues that the law
must facilitate a decision-making process that recognises those subtleties. Those subtleties are
not well articulated in the language of human rights: more informal mediation of the issues is
desirable.The link to global health rights is plain.
Carsten Momsen and Mathis Schwarze examine recent developments in the law relating to
assisted suicide in Germany, noting the striking down by the constitutional court of a law prohibit-
ing the ‘business-like’ promotion of assisted suicide, and the creation or articulation by the court of
a general right to autonomous decision-making at the end of life.This is a particularly significant
development in view of Germany’s haunted past and its explicit legal recognition of dignity as a
foundational principle. It entails a conviction that dying is part of living. But does this mean that a
right to health entails a right to die at the time and in the circumstances one chooses? It does not

4 Jonathan Herring and Phong Chau,‘My Body,Your Body, Our Bodies’ (2007) 15(1) Medical Law Review, 34–61.

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appear to go so far. Certainly, it does not confer a right to assisted suicide or euthanasia.The court’s
decision is constitutional: it is primarily concerned with the legitimate reach of the state – with what
the state should not do.The state should, as a general rule (to which there are several important
exceptions), not interfere with the decisions made by a capacitous person about the circumstances
in which they end their life. Decisions about human rights always have some constitutional colour:
they always concern the tension between individual and corporate existence. But this does not
mean that constitutional decisions necessarily delineate – let alone create – rights.The lesson from
the German experience for this book does not concern the issue of whether or not a right to
assisted dying should be part of a global right to health: there will be many different views about
that. It is, rather, that a right to health, if it is to be meaningful, must be specifically enacted: we
cannot assume that it will spring into existence to fill the vacuum left when a court or a legislature
forces the state to retreat from a particular legal domain.

Conclusion
This book has examined the main international instruments that purport to confer a right to
health. It has surveyed many aspects of health law in many jurisdictions, asking if they are evi-
dence of a national acknowledgement of a right to health, and asking too what they indicate
about the practical problems associated with asserting such a right.
Several conclusions emerge clearly. Several others, we think, can be cautiously inferred.

The clear conclusions

1. There is an international consensus, embodied in a number of international declarations,
that all humans have some basic rights.
2. A right to health is a foundational right. Many other rights cannot be realised unless and
until a right to health is recognised.
3. There is no consensus about the precise content of a right to health. For some jurisdictions,
for instance, it may include a right to abortion services or to physician-assisted dying. In
other jurisdictions to confer such rights would be seen as diminishing the health of the
nation, holistically viewed.
4. Health rights cannot be viewed in isolation. Rights generally characterised as social or
financial impact on health rights, and vice versa.The boundaries between health and other
rights are hard to map, but when one can confidently identify a health right and, e.g. a social
right, it will be obvious that they are competitors for resources.
5. While there is near universal acclaim for the idea of a health right, the implementation of
health rights is very patchy. Sometimes this is due to inadequate resources; sometimes to
doubt about what health rights should entail; sometimes to lack of political will; sometimes
to inadequate articulation of the substantive law necessary to enshrine a right; sometimes
(and indeed very often) to inadequate implementation of an adequately articulated right
(often coupled with inadequate systems, whether regulatory or judicial, for review of the
inadequate implementation).
6. Discussion of the right to health often occurs in highly abstract language. It is often forgot-
ten that what is really at stake are the lives and the thriving of real people. This amnesia
often drains the discussion of the urgency necessary to effect real change.
7. There are gross discrepancies between the ability of different jurisdictions to implement
any of the demands of a right to health. Unless and until those discrepancies are eliminated
(which seems to be a messianic rather than a political or legal project), talk about a right

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 A right to health

to health is likely to mean very different things to different nations. It might mean a right
to unpolluted drinking water in a sub-Saharan African country; it might mean a right to
assisted reproductive techniques in Germany. Talk about equity and proportionality is all
very well, but can one really expect German voters to give up some of their healthcare
rights in order to reduce the disparity between their healthcare provision and that in the
sub-Saharan state?
We are not advocating despair. Nor are we saying that the global health rights project
should be put on hold until there is economic parity between nations.We should do what
we can. But agreement (if it can be reached) about the minimally acceptable content of a
global health right should not reduce the drive for international parity which, in the end,
will be a more potent contributor to global health than any global health rights treaty.
8. Human dignity appears as a constant refrain in appeals for a real right to health, but the
substantive meaning of dignity is unclear.While it remains unclear it will be hard to use it
as an instrument for meaningful change. Dignity, we suggest, is not constitutionally amor-
phous. It can be given a sufficiently hard-edged meaning to make a real difference, but
more philosophical and legal work is necessary to give it that hard edge.
9. Human rights, as Jesse Wall points out, may not necessarily be the best legal way of achiev-
ing all desirable healthcare objectives.We believe that a global right to health is vital, but it
should be seen as just one tool in the toolkit.

The cautious conclusions

1. There should be an attempt on an international level to agree what a global health right
would entail.
2. This is unlikely, as noted above, to include, for instance, a right to assisted reproduction
(there is simply not the money to finance such a right), or to access abortion or assisted
dying services (because of the wide difference in views about whether such practices are
desirable and contribute to human thriving).This does not mean that aspirations to a right
to more than the agreed minimum should be abandoned. Far from it. But the best is often
the enemy of the good, and we suspect that it would be here. If assisted dying were on the
list of irreducible rights, many nations would simply refuse to sign, so depriving many of
the benefit of interventions that should genuinely be on the list. It would be cruelly ironic
if millions continued to die of malaria because assisted dying for a few was regarded as a
non-negotiable component of a global rights treaty.
3. Health, for these purposes, should be defined holistically, in terms of human thriving, and
its relationship with social and other rights expressly acknowledged.
4. There should be an attempt, again on an international level, to agree how a global health
right should be implemented and its implementation reviewed and enforced.The systems
of review of other human rights violations provide a model, but few would disagree that
systems of enforcement in cases of human rights violation are woefully inadequate. We
cannot make a realistic case for a special international tribunal to adjudicate global health
disputes, and simply join many others in a plea for a regime of international human rights
enforcement with real teeth.
5. Human rights, as we noted above, should not be seen as the whole solution.

So: Does a universal right to health exist in practice? The answer is currently and clearly no.We
have identified several ways in which the international community and its constituent nations
might change that answer.

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 Clayton Ó Néill and Charles Foster

References
Ssenyonjo, Manisuli, ‘The Influence of the International Covenant on Economic, Social and Cultural
Rights’ (2017) 64 Netherlands International Law Review 259–289.
Ssenyonjo, Manisuli, Economic, Social and Cultural Rights in International Law (Hart 2016).
Herring, Jonathan and Chau, Phong, ‘My Body, Your Body, Our Bodies’ (2007) 15 (1) Medical Law
Review 34–61.

400
 INDEX

A G Ondo State v A G Federation 189 asbestos 173

AB v Minister of Social Development 84–85 asbestosis 173
Aboriginal health 31 Ashcroft, John 372
abortion 7, 392–393; arguments about 102; denial assisted dying 8, 18–19, 108, 352, 361, 370, 390;
of access 27; and freedom of conscience 39–40; ethical debates 377–381, 383, see also Australia;
and religion 102–104; rights to 37–38; and Canada; euthanasia; Germany; medical aid in
violence against women 26, see also Northern dying (MAiD); New Zealand; United States;
Ireland; pregnancy termination voluntary euthanasia (VE)
Abuya, Timothy 210 assisted reproductive technologies (ART) 7, 36–38,
accommodations: for healthy adults 31; for people 84, 392; concerns about 87–88, 93; costs of
with disabilities 17, 28–29, 31, 36 95–97; denial of access 85–86; and the law
Additional Protocol to the American Convention 88–91; in Uganda 86–99
on Human Rights,Article 10 51 Attorney General v X 109–110
Adebowlae,Victor 27 Australia 363–364, 396–397; Euthanasia Laws Act
adequate standard of living, defining 43–44 1997 (Cth) 350; and palliative care 349–352,
Africa: and the ICESCR 58; patriarchal cultures in 357–358; Queensland 358; Rights of the
86–87; and poverty 58, 85, 91–92, see also specific Terminally Ill Act 1995 (NT) 349–350;VAD
countries legislative overview 348–351;Voluntary and
African Charter on Human and Peoples’ Rights Natural Death Bill 1993 (ACT) 349;Voluntary
21, 181, 184, 189–194, 201, 393;Article 4 14n7; Assisted Dying Act 2017 (Vic) 348, 351–356,
Article 5 21n65;Article 6 208;Article 16 51, 363;Voluntary Assisted Dying Act 2019 (WA)
190–193 348, 356–358
Ago, Roberto 72 autonomy 341–342, 397; and arguments about
Akobeng,Anthony K 134 reproductive technologies 37–38; and assisted
Alma Ata Declaration (1978) 182 suicide 337–340, 343–345
Alyne da Silva v Brazil 27, 30 availability, accessibility, acceptability, and quality
American Convention on Human Rights 62n1 (AAAQ) framework 219–223
Americans with Disabilities Act 84 Azubike v Attorney General of the Federation 193
Améry, Jean 343
Amnesty International 117–118 Baker, Ted 239
An Organisation with a Memory (Donaldson) Bandhua Mukti Morcha v Union of India
234–236, 266 169–170n17
Andel, Charles 260 Baxter, Robert 372
Anekwe, Lillian 28 Bearman, GML 309
aporiai 4, 6–7 Beijing Platform for Action 26
arbitrary, defining in international law 15 Biomedicine Convention 282, 394;Article 3 129
Aristotle 3–4, 341 ‘Bolam test’ 256–257

401
 Index

Bolitho 256–257 contraception, rights to 37–38

Brazier, M 318 Convention against Torture (CAT) 11, 20, 263, 266
Brazil 75–77 Convention on the Elimination of All Forms of
brotherhood 12 Discrimination against Women (CEDAW) 4–5,
Brown, Peter 359 11, 27, 184;Article 11 51;Article 12 51, 117;
Buganda 86–88 Article 14 41; and NI Abortion Regulations
Busingye, Robert 93 102, 108–109; Northern Ireland Report 105,
107–109, 120; Optional Report 107–108
Campion, Cam 359 Convention on the Rights of Persons with
Canada 301; assisted suicide in 349, 355; Canada Disabilities (CRPD) 5, 11, 20–21;Article 5 13;
Health Act (1984) 368; Charter of Rights Article 10 14n6;Article 12 21n66;Article 19 29;
and Freedoms 374–375; consent in 309–310; Article 25 28–29;Article 26 29, see also people
Criminal Code 374–376; healthcare-associated with disabilities
infections (HAIs) 303–304; healthcare system Convention on the Rights of the Child (CRC) 5,
305, 368; heath literacy in 308–309; medical aid 11, 12n1, 20, 125, 184, 196–197;Article 2 13;
in dying (MAiD) 349, 355, 369–370, 374–377, Article 3 123n8;Article 5 123n8;Article 6 14n5;
381–383, see also Quebec Article 12 145;Article 24 51, 122–123, 127;
Carter v Canada 349, 359, 374 Article 27 40–41; General Comment 15 128
Centre for Reproductive Medicine v Mrs U 89 Copp, David 44
Chapman,Audrey R 65 Coronavirus Response Investment Initiative 54
Charter of Fundamental Rights of the European corruption, concerns about 58
Union (CFREU) 125;Article 35 127, 246 Council of Europe (CoE) 129; on children’s
Chau, P-L 327–328 rights 124
children 122; in Africa 87; Child Rights Court of Justice of the European Union
Act (Nigeria) 196–197, 201; and consent (CJEU) 127
143–144; and the Council of Europe (CoE) COVAX 54
124; incarceration of 273; intersex 124n12, COVID-19 30, 47, 391; and Hong Kong 162–165;
124n14; lack of medical devices for 131; lack of and human rights 54–55; and the ICESCR 49;
scientifically appropriate medical care 123–124, and isolation 54–55; and Kenya 211, 214–216,
128, 130; safeguarding rights of 142, 145–146, 220; national responses to 53–55, 59–60; and
148; standard of care for 135–138, 141–142, pharmaceutical companies 56; in Sierra Leone
146; and the UK 272–273, 285; vulnerability of 57; and the UK 257, 265, 271–273, 286, see also
123, see also Sweden global health emergencies; pandemics
China, and COVID-19 54 Crawford, James 72
citizenship, and rights 3–4 Crowe, Jonathan 3
civil and political rights (CPR) 64 culturally appropriate healthcare 222–223
Claassen, Rutger 44 Cuscul Pivaral et al. v Guatemala 62–63, 69–75
Clean Air case 160, 166
clothing, importance of 42 D v United Kingdom 20
Collins J 359–360 Daniels, Norman 43–44
Committee on Economic, Social and Cultural de Campos, Thana, The Global Health Crisis
Rights (CESCR) 5, 48, 50, 125n15, 158, 55–56
219, 247; General Comment 3 62, 64–67, 70, de Londras, Fiona 103
169–170; General Comment 4 42; General deaths, justifying 14–15
Comment 7 42; General Comment 14 24, 62, defensive medicine 218
164; on right to health 32, see also International devolution: and health governance 213–220; in the
Covenant on Economic, Social and Cultural UK 284, 290–294
Rights (ICESCR) Dickson v United Kingdom 84
conscientious objection 362, 378, 392–393; and dignity 12, 22, 169, 396–397; background of
the Abortion Regulations 102, 107, 111–119, 168; and honour 34–35; and India 168–171,
116–119; freedom of 39–40; objections to 113 173–174, 176, 178; and personal autonomy
conflation problems 63–64, 66–69, 73, see also 19; and suicide 341–342, 372, 379; in Sweden
duties of immediate and progressive realisation 141–142
consent 143–144, 309–310; post-death Diringer, Michael N 135
318–319, 323 disclosure 144–145
consent procedures 20 discrimination: and equality 25; and transgender
Consumer Education and Research Council v Union of people 25n9; in the United Kingdom 13,
India 173 see also specific forms of discrimination

402
 Index

DNAR forms 263, 271–272, 380 evidence, grading 133–134, 139

domestic abuse 26; and privacy 34 evidence-based medicine (EBM) 131–133, 135,
Dominican Republic 27 139, 146
Donaldson, Liam 266 experience: assessing 139–140; and science 140–141
duties: and human rights 323; imposing 323–324
duties of immediate and progressive realisation Fabre, C 319
64–65, 70–72, 76–77, see also conflation failed asylum seekers 285, 289, 292–293
problems; minimum care obligations Femi Falana v Attorney-General of the Federation 193
duty of candour 251 fetuses 22, see also embryos
duty of care: in Cuscul Pivaral et al. v Guatemala food, rights to 41
70–71, 70–72, 74; and healthcare institutions Foster, Charles 58, 280
63; and incarceration facilities 17, 126n20; and France, and COVID-19 53
mental illness 75–77; and parents 123; for the Francis Carolie Mullin v Administrator of Delhi
vulnerable 63 169n14
duty to educate the population 70–74 Francis, Robert 237, 251
duty to provide access to HIV testing and medical freedom of conscience, and abortion 39–40
treatment for the HIV population 74 freedom of conscientious objection 39–40
duty to regulate and supervise local healthcare freedoms 5
institutions 63, 70–73 French revolution 3–4
duty to regulate, supervise and investigate 75–76 Friedman, Eric A 57
Dworkin, Ronald 35
Ganda community 86–88
Ebola epidemic, and the WHO 52–53 Gaylin, Willard 378n51
economic, social, and cultural rights (ESCR) 62, gender: and healthcare provision 27, see also
64, 66, 70 transgender people; women
Edmond, MB 309 gender inequality 25–26
Eekelaar, John 34 General Comment 20 20
Egypt 27 General Comment 36 17–18
embryos 19, 22; and ART 89, see also fetuses Georgina Ahamefule v Imperial Medical Centre
emergency medical treatment, in Kenya 210–211 192–193
endoxa 4 Germany 332–333, 397–398; § 216 Tötung auf
Enright, Máiréad 103 Verlangen 341; § 217 Strafgesetzbuch1 332–335,
epidemics, and the WHO 51–53 337, 342, 344; attitudes towards assisted suicide
equality, and UDHR Article 7 24–33 342, 344; Bundesverfassungsgericht 332–333,
equality rights: changing understanding of 30; 335–336, 338–339, 344–345;‘business-like’
requiring action 31 suicide criminalisation 332, 334–335; doctrine
equity, and pandemics 56 of legal goods 336–337; euthanasia 338–339;
eudaimonia 8–9 legality of assisted suicide 333–334, 336–338,
European Committee of Social Rights 129 344–345, 397–398; right-to-die organisations
European Convention on Human Rights (ECHR) 332, 334–335, 338, 340, 342, 344–345; suicide
4, 11, 266, 282, 390;Article 2 18–19, 126, 159, in 333, 337–338
262–263;Article 3 20–21, 109n16, 125–126, Gething,Vaughan 288
262–264, 281;Article 5 263–264;Article 7 ‘Getting It Right First Time’ (GIRFT) project
147–148;Article 8 18n43, 37, 84, 107–108, 244–245
109n16, 263;Article 9 112, 114, 117–118; Gideon Kilundo & Daniel Kilundo Mwenga v Nairobi
Article 14 262–263; and assisted suicide 18–19 Women’s Hospital 208
European Social Charter:Article 4 41;Article 11 global contexts, importance of 6
51, 129 The Global Health Crisis (de Campos) 55–56
European Union Charter of Fundamental Rights global health emergencies 47, see also COVID-19
and Freedoms 281 global health law 55–57
European Union (EU): COVID-19 response 54; Gostin, Lawrence O 49–50, 57–58, 58–59n62,
Treaty of Lisbon 246; and the UK 246, 281n12, 60, 392
282, 285–286 Grading of Recommendations Assessment,
euthanasia 8, 18–19, 348, see also assisted dying; Development and Evaluation (GRADE)
voluntary euthanasia (VE) 133–134, 139
Evans, Natalie 89 Gray, Paul 289–290
Evans v Amicus Healthcare 89 Greater Glasgow Health Board v Doogan and Others
Evans v the United Kingdom 84 (Doogan) 115, 117–119, 393

403
 Index

Greco, Luís 336 of State Policies 169–170; and social minimum

Guararapes Rest House 75 169–170, 178; Supreme Court 171–175
Guatemala 69–75 inequality, and public health systems 57
gynaecologists, in Uganda 92–93 infertility 36, 83–86, 91, see also involuntary
childlessness
Hale, Lady 107–108 Inter-American Court of Human Rights
Harding, Seeromani 28 (IACHR) 7, 62, 392; and the conflation
Harris, John 36, 318 problem 68–69; Cuscul Pivaral et al. v Guatemala
Hassemer, Winfried 336 69–75; Ximenes Lopes v Brazil 75–77
health: defining 48, 279–280, 391; importance of 23 International Bill of Human Rights 49
health governance 212–219 International Convention on the Elimination of
health insurance 192, 196, 367; in Germany 340; All Forms of Racial Discrimination (CERD)
in Kenya 211, 218; in Nigeria 187, 195–197; 184;Article 5 51
and people with disabilities 29; in the UK International Convention on the Protection of the
248, 250, 270, 290; in the US 337, 368, see also Rights of All Migrant Workers and Members of
Nigeria; social health insurance Their Families 21n64, 184
health tourism 287–289, 394 International Covenant on Civil and Political
healthcare 367; human rights-based approaches Rights (ICCPR) 11, 49–50;Article 3 15;
32–33, 224 Article 6 13n4, 14–17, 19, 126, 348;Article 7
heath tourism 296; and the UK 287–289 20–21, 21n63, 348;Article 9 15, 208;Article 11
Hepple, Sir Bob 25 208;Article 16 21;Article 17 348; and Hong
herd immunity, and rights to health 30 Kong 156
Herring, Jonathan 58, 122n3, 280, 327–328 International Covenant on Economic, Social and
Hervey, TK 280 Cultural Rights (ICESCR) 4, 7, 11, 62, 181,
Hickam, DH 214 191, 219;Article 2 49, 64, 158;Article 4 50–51;
High Quality Care For All (2008) 232 Article 11 40;Article 12 4–5, 16, 16n23, 22,
HIV: in Guatemala 70–75; in Nigeria 180, 193; 24, 48–50, 137, 158–159, 192–193, 247, 348,
and violence against women 26 391, 394–395; General Comment 12 41, 43;
Hong Kong 8, 155, 396; Basic Law 155–156, General Comment 14 40, 66–68, 127–128,
158–159; Bill of Rights 159, 166; and 155, 185–186, 190; General Comment
COVID-19 162–165; Human Rights Act 1998 19 42–43; and Hong Kong 156–157, 160,
156; and the ICESCR 156–157, 160, 165–166; 165–166; Optional Protocol 49, 58, 107–108,
Prevention and Control of Disease (Prohibition 247; violations 49–50, see also Committee
on Group Gathering) Regulation 163–165; on Economic, Social and Cultural Rights
Prohibition on Face Covering Regulation (CESCR)
161–163; and the right to health 156–158, interventionism, and the courts 177
160–161, 165–166 involuntary childlessness 83, 86, see also infertility
honour 34–35, see also dignity Ioannidis, John PA 132–133
housing, right to 41–42 Ireland, and COVID-19 54
human body 327–328; post-death 317–320, 397 Irish Republic 102, 286–288, 291n78, 393; Aontú
Human Fertilization and Embryology Authority ex party 104n4; constitution (8th Amendment)
parte Blood 89 103–104, 110, 120; Life During Pregnancy
human identity 30 Act 2013 109–110; Sinn Féin 103–104, see also
human rights 279, 320, 322–327, 330, 399; and Northern Ireland
COVID-19 54–55; malleability of 321–322, isolation, and COVID-19 54–55
324–326; and patient care 217–219; post-death Italy, and COVID-19 53
317, 329, 397
Human Rights Committee 50 Janaway v Salford Health Authority (Janaway) 115,
Hunt, Jeremy 283 118–119, 393
Hunt, Paul 33, 65–66 Johnstone, Alex 289
Jonah Gbemre v Shell Petroleum Development
Icelandic Human Rights Centre 43 Company Nigeria Limited and others 189
ill health, debates about 24 Joseph Odafe and Others v Attorney-General of the
Imago Dei 12, 22 Federation and Others 193
India 8; and Article 21 169–170n17, 172, 175–176, justice 56–57, 59; importance of 56
178; Constitution 173–174, 176; Delhi
High Court 176–177; and dignity 168–171, Kainz, Howard P 3
173–174, 176, 178, 396; Directive Principles Kant, Immanuel 168, 341–342, 396

404
 Index

Kennedy, Duncan 325, 330 Melzer, Nils 273

Kenya 8, 85, 90; Constitution (2010) 205, 210, mental illness: and assisted suicide 333–334, 339,
213, 216, 223–224, 395; and COVID-19 211, 343–344; state duties towards 75–77
214–216, 220; denial of heathcare 210–212; Mid Staffordshire crisis 237–238
harmful conduct by medical professionals minimum care obligations 63, 66–68, see also duties
209–210; Health Act 2017 210; health costs of immediate and progressive realisation
208–209, 217, 221; and health governance minimum wage, in Uganda 91
213–220; health workers in 211, 214–216; Mohd Ahmed (minor) v Union of India 175–177
hospital conditions 208, 211–212; and medical Mohinder Singh Chawla 174
errors 205–206; National Patients’ Rights moral duties 56; of pharmaceutical companies 55;
Charter 211; patient detention in 208–209; and of wealthy people 55; of wealthy states 55
patient safety 205–207, 219–223; and universal Morecambe Bay scandal 238
health coverage 221–222 Mori, Larisa M. 162
Kindström-Dahlin, Moa 143 Morton, Wendy 273
Kizer, Ken 232 “mothers” and ART 90–91
Kong, Karen 160
Kusch, Roger 334 National Aboriginal Health Strategy Working
Party 30–31
Laws, Michael 359 natural law theories 3
LC v Peru 27 Neal, Mary 39
Lecretia’s Choice:A Story of Love, Death and Law ‘Never Events’ 232–233, see also medical errors
(Seales) 360 The New Bioethics (Neal, Fovargue and Smith) 112
Legal Defence and Assistance Project (LEDAP) New Zealand 363–364, 396–397; End of Life
GTE & LTD v Federal Ministry of Education & Choice Act 2019 348, 351, 360–362; New
Anor 190 Zealand Bill of Rights Act 1990 (NZBORA)
legal fees, and the NHS (UK) 252–253 359–360, 362;VAD legislative overview 359–363
letters of claim 252–253 NHS (UK) 228–229, 245–248; Care Quality
Liao, Matthew 23 Commission (CQC) 231, 233–234, 236,
Lindemann, Kate 31 269–272; charging requirements 290–294,
Litins’ka,Yana 142n148 394–395; Clinical Negligence Scheme for Trusts
local experiences, connected to global contexts 6 (CNST) 245; costs of 245–247; Cumberlege
Locke, John 3–4 review 239–241, 268; and devolution 284,
Lopes de Sousa Fernandes v Portugal 126 290–294, 395; and discrimination 264–265,
low-and middle-income countries (LMICs), and 269–270; and ethnic minorities 27, 265; and
patient safety 207, 229 foreigners 282, 285–286, 292–294, 394–395;
Independent Medicines and Medical Devices
McCoy, David 215 Safety (IMMDS) Review 268–269; Mansell
McCrudden, Christopher 164 Report 269; National Institute for Health
McGlinchey v UK 21 and Care Excellence (NICE) 245–246; and
McGuiness, S 318 ‘Never Events’ 232–233; NHS Act 1977 283;
McHale, JV 280 NHS Improvement (NHSE&I) 262–263;
Madaga, Alex 210 NHS Resolution (NHSE) 249; patient claims
Mance, Lord 109 against 248–257; patient claims costs 255–256;
MAO & Another v AG & 4 Others 208 patient safety culture 233–234, 236, 239, 241;
Marsh, Luke 159 patient safety issues 234, 237–239, 266–268;
Matheson, Michael 289 and patient safety policy papers 231, 237, 267;
Maung, Hane 36 Patient Safety Strategy (2019) 240; patient safety
Mbau, Rahab 222 timelines/organizations 235–236; private/public
mediation 254 relationships in 248–250, 270–271, see also
medical aid in dying (MAiD) 367, 369, see also health tourism; United Kingdom
assisted dying;Australia; Canada; euthanasia; Nicklinson case 108–109
Germany; New Zealand; United States; Nigeria 8, 85, 180, 393; and the African Charter
voluntary euthanasia (VE) 190–193, 201; Child Rights Act 196–197,
medical errors: in Kenya 205–206; in Quebec 300, 201; Compulsory Universal Basic Education
see also ‘Never Events’ Act 199; Constitution of the Federal Republic
medical ethics 50 of Nigeria (1999) 181, 188, 190; courts in
medical experimentation 20 189–190, 192–193; Discrimination against
Meier, Benjamin Mason 162 Persons with Disabilities (Prohibition) Act,

405
 Index

2018 200–201; healthcare costs in 180–181, WHO 206, 229, 275–276, 395, see also NHS
183, 188, 194; and HIV 180, 193; National (UK); Quebec
Health Act 197–201, 393; National Health Patients’ Rights Directive,Article 4 130
Insurance Commission Bill 196; National Peled-Raz, Maya 217–218, 395
Health Insurance Scheme Act 194–196, 199; people with disabilities: accommodations for 17,
National Primary Health Care Development 28–29, 31, 36; discrimination against 28; and
Agency (NPHCDA) 199; Patients’ Bill of health insurance 29; and incarceration facilities
Rights 200; Presidential Summit on Universal 17; learning disabilities 264, 269–270; mental
Health Coverage Declaration 186–187, 192; health issues 265; social model 29; special
Prisons Act 193; and universal health coverage protections for 17, see also Convention on the
181–182, 186–190, 195, 198, 200, 393 Rights of Persons with Disabilities (CRPD)
NIHRC Supreme Court case 107–109 personal autonomy, and dignity 19
Northern Ireland 7, 286–288, 292–294;Abortion Petrova, Dimitrina 27, 29–30
Regulations (2020) 102, 106–107, 118, phainomena 4
392–393; CEDAW Report 105, 107–109, pharmaceutical companies: and COVID-19 56;
111, 120; consultations in 110–111; Criminal moral duties of 55
Justice Act (NI) 1945 107; midwives in 115; Platt, H 355
Northern Ireland (Executive Formation etc) Poots, Edwin 288
Act 2019 105–106, 111, 115, 119–120; Offences poverty: and Africa 58, 85, 91–92; and healthcare
Against the Person Act 1861 104–105, 107, 109; needs 26, 42, 55
residency requirements 291; survey questions pregnancy services, inadequate nature of as
116, see also Irish Republic; United Kingdom discrimination 27, 30
Nussbaum, Martha 35, 168, 169n16 pregnancy termination 19, see also abortion
Pretty v The United Kingdom 349
obligations, of human rights 323 Principles and Guidelines on the Implementation
obligations of conduct 72; of doctors 172 of Economic, Social and Cultural Rights in the
obligations of result 72 African Charter on Human and Peoples’ Rights
Oderberg, David S 113 191, 194
off-label medications 123, 130–131 privacy, right to 34, 391
Office of the United Nations High Commissioner Pt Parmanand Katara 171–172, 175
for Human Rights (OHCHR)/World Health Pufendorf, Samuel 341
Organization (WHO), Fact Sheet 31 5, 52
O’Neill, Onora 43, 68 qualified one-way costs shifting (QOCS) 255
Opening the Door to Change 233n29, 237, 239 quality, and medical care 130–131, 146–147, 230
organ donation 319 Quebec 300;Act Respecting Health Services and
Organisation of American States (OAS) 62, 77 Social Services (AHSSS) 301–303; assisted dying
in 377; data accessibility in 308–310; health
Palaszczuk, Annastacia 358 data in 306–308, 310; healthcare-associated
palliative care 291, 355, 380–382; in Australia infections (HAIs) 303–304, 307; healthcare
349–352, 357–358; in the US 371, 378 safety in 299; medical errors 300; reporting
Pan-American Health Organization (PAHO), on sytems in 300–304, 393–394, see also Canada
reproductive/sexual health 37–38
pandemics 391; and equity 56, see also COVID-19 R (on the application of Nicklinson and another) v
parents: authority of 143–144, 145n176; and duty Ministry of Justice 108–109
of care 123 R v Barnet London Borough Council, Ex parte
Paschim Banga Mazdoor Khet Samity 174–175 Shah 284
Paterson, Ian 249–250 racial discrimination 27–28
patient claims, and the NHS (UK) 248–257 Ram Lubhaya Bagga 174
patient detention, over unpaid bills 207–209 Ramji Tiwari v State of UP and others 169n15
patient harm 206, 395; denial of treatment 210– Ramsden, Michael 159–160
212; from detention 207–209; and foreigners Rao, Mala 27
282; from medical professionals 209–210, 216 Raz, J 323
patient rights movement 218 reciprocity principle 44
patient safety 205–207, 219–223, 244, 259, 275, religion: and abortion 102–104; and ART 87; and
299, 393–395; and a culture of prevention conscientious objection 111–112, 116–117; in
304–305; at a global level 227–228, 230–231, NI 103
241, 260–261, 273–275; and consent 309–310; Report of the Committee of Inquiry into Human
and health financing in Kenya 216–217; and the Fertilisation and Embryology 36

406
 Index

reproductive rights 35–38 Shrewsbury/Telford scandals 238–239

responsibilites, and rights to health 6, 16 side-effects, and consent 144
right to die 348–349, 396 Sierra Leone, and COVID-19 57
right-to-die organisations 332, 334–335, 338, 340, Silva Pimentel,Alyne da 27
342, 344–345 ‘slippery slope’ arguments 338–341, 378–380, 396
right to food 41 Smalling, Ricardo 39–40
right to found a family 38 Smiths and Peerbooms case 130
right to health/healthcare 4–5, 51, 227, 279–281, social health insurance 194, 393, see also health
389, 392, 395–396, 398–399; application insurance
mismatch 5; articulation of 57–58; and basic social justice 173
human needs 56; CESCR requirements 32, 49; social model of disability 29
collective nature of 30, 33; and conscientious social security 42–43
objection 120; explicit protections of 24, Sokas, Rosemary 214
60; history of 47–48; and Hong Kong law South African Constitutional Court 170, 177
156–158, 160–161, 165–166; and human tissue South America 27
328, 397; and the ICESCR 49–50, 185–186; Spain, and COVID-19 53
jurisprudence on 69; misconceptions about Sreenivasan, Gopal 30
5; and patient safety 219; and poverty 55; Ssenyonjo, Manisuli 49, 58, 391
protecting 58; and responsibilites 6, 16, 60; and statistics: Canada on assisted dying 370, 380;
safe healthcare 261–262; shortcomings 49; well- doctors on assisted suicide 358, 378, 381;
being conception of 56, see also universal right housing and health 41–42; infertility 85;
to health infertility in Uganda 83–84, 91; United States
right to housing 41–42 on assisted dying 370, 379, 381; unsafe patient
right to life 14–15, 169n14 care 260–261
right to medical care 42 Steele, Alison 273
right to privacy 34, 391 stigma, and suicide 339, 344
right to refuse treatment 33–34 Stransham-Ford v Minister of Justice and Correctional
right to social security 42–43 Services 359
right to water 41 Street, Maryan 359
rights: and citizenship 3–4; and discrimination Sudan 27
5; and inequality 24; and state obligations 32, suicide 339, 341, 343–344, see also Germany
60, 63 surrogacy 97–98
Robison, Shona 288 Sustainable Development Goals (SDGs) 86, 182,
Roma 27 201, 228
Roosevelt, Franklin D 48 Sweden 7, 124, 135–147, 394
Roxin, Claus 336 Switzerland 342–343
Ruger, Jennifer Prah 48, 52, 58
Rynning, Elizabeth 141, 143 Tasioulas, John 66, 68, 320–321, 323–324, 330
Tesoriero, Paula 362
Sahlin, Nils-Eric 140–141 The Lancet 52
Savulescu, Julian 39, 113 Thierse, Wolfgang 339
Schneider, Elizabeth 34 Tobin, John 48, 68, 164
Schuklenk, Udo 39–40 Todd, James 128n39
science: defining in Sweden 139; and experience Tracey, David 271
140–141, 145 Tracey, Janet 271
Scotland 283, 287–294, see also NHS (UK); transgender people: and the UDHR 25n9, see also
United Kingdom gender
Seales, Lecretia 359–360 transparency, importance of 299
Second World War 12, 20 treatments, right to refuse 33–34
Sen, Amartya 169–170 Treaty of Lisbon 246
Serour, Gamal 86 Treaty on the Functioning of the European Union
sex discrimination 25–27 (TFEU),Article 168.7 127
sexual assault, against women 26 Trump, Donald 55
sexual harassment, against women 26 twins, in Banda 88
Seymour, David 360–361
SH v Austria 37 Uganda 7, 85;ART in 85–99, 92, 392;
Sheikh, Hakim 174–175 gynaecologists 92–93; infertility statistics 83–84,
Sherwin, Susan 38 91; Medical and Dental Practitioners Council

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89; Mulago National Referral Hospital 93; the 201; and the UN 182–185; and the WHO
National Objectives and Directive Principles of 182–184, 227–229
State Policy 85 Universal Period Review 65n5
United Kingdom 247, 349;Abortion Act 1967 universal right to health 6–8, 60, 389, 399; history
104–105, 114–115, 117–118;ART in 84, 90, 392; of 48, see also right to health
CEDAW Report 105, 107–109; and children unsafe care 260–261, 274, see also Kenya; patient
272–273, 285; and COVID-19 54, 164, 257, 265, safety
271–273, 286; and devolution 284, 290–294;
discrimination in 13; Each Other charity vaccination programmes 30
270–271; Equality Act (2010) 263–264, 286; and vaccines, and COVID-19 54
the EU 246, 281n12, 282, 285–286; and health Vernon, Helen 255
tourism 287–289, 394; Healthcare (European Vienna Convention on the Law of the Treaties,
Economic Area and Switzerland Arrangements) Article 18 129
Act 2019 286, 289; hostile environment policy Vienna Declaration of the World Conference on
282–283; Human Rights Act 1998 246, 262, 271, Human Rights (1991) 44
282, 286, 294–295; Joint Committee on Human Vincent, Charles 207
Rights (JCHR) 272–273; malpractice costs in Vo v France 108
245; NHS Act 1977 283; NHS Act 2006 246; voluntary euthanasia (VE) 349, 369–370, 373, 383,
Patient Safety Learning 264n18, 268, 271, 275; see also assisted dying; euthanasia
residency in 284–285, 289;Windrush scandal 283, vulnerable populations, state responsibility for
see also NHS (UK); Northern Ireland; Scotland 75–76
United Nations, on universal health coverage
182–185 Wagner, Anke 207
United States:Americans with Disabilities Act Wahlberg, Lena 140–141
84; assisted suicide in 337;‘Assisted Suicide Wales 287–288, 291–292, see also United Kingdom
Prevention Restriction Act (1997)’ 371; Hawai’i Walker, Robin 111
373–374; health insurance 368; healthcare- Walton, Douglas 338
associated infections (HAIs) 307; healthcare water, in the ICESCR 41
system of 305, 309, 368–369, 383; medical aid Weaver, Matthew 238
in dying (MAiD) 369–374, 372–373, 375–377, Weller, Penny 29
380–383, 396; Montana 372–374; and ‘Never Wenham, Clare 52–53
Events’ 232; Oregon 369n9, 371–374, 378, 382; White, B 354–355
palliative care in 371, 378; Patient Protection Widdows, Heather 58, 58–59n62
and Affordable Care Act (ACA) 368; poverty William and Anita Powell against the United
and healthcare in 55; racial gaps in health Kingdom 126
outcomes 28; reporting sytems in 300–301; women: violence against 26, see also gender
White House Coronavirus Task Force 55 World Health Organization (WHO): 1948
Universal Declaration of Human Rights (UDHR) Constitution 181; and epidemics 51–53; health
4, 7, 11, 48, 125, 157, 324–325, 330, 390;Article definition 279–280, 391; Health Emergencies
1 12–13, 22;Article 2 12–13, 21n62, 25, 390; Programme 53; on patient safety 206, 229,
Article 3 13–14, 320–322, 326–328, 367, 390, 275–276, 395; on reproductive/sexual health
397;Article 5 20, 390;Article 6 21–22, 390; 37–38; on universal health coverage 182–184,
Article 7 24–33, 390;Article 12 33–35, 367, 227–229
390–391;Article 13 208;Article 16 35–38, 83, World Health Organization (WHO)
390–391;Article 18 38–40, 390–391;Article 19 Constitution 48
39–40, 390–391;Article 22 320–322, 326–328; Wu, Albert 256
Article 25 4–5, 22, 40–44, 51, 247, 320–322,
326–328, 390;Article 29 367 Ximenes Lopes v Brazil 62–63, 75–77
universal health coverage 8, 222, 296, 393; and the
African Charter 192; and Kenya 221–222; and Yamin,Alicia 26, 35
medical detention 209; and Nigeria 181–182,
186–190, 195, 198, 200–201; and right to health Zuckerman, Adrian 253

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