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Oxford Specialist
Handbook of
Paediatric
Palliative
Medicine
Second Edition

Richard D.W. Hain

Consultant and Clinical Lead, Paediatric Palliative Care
Noah’s Ark Children’s Hospital, Cardiff; Visiting Professor,
University of South Wales and Honorary Senior Lecturer,
Bangor University, UK

Satbir Singh Jassal MBE

Medical Director
Rainbows Hospice for Children and Young Adults
Loughborough, UK

1
1
Great Clarendon Street, Oxford, OX2 6DP,
United Kingdom
Oxford University Press is a department of the University of Oxford.
It furthers the University’s objective of excellence in research, scholarship,
and education by publishing worldwide. Oxford is a registered trade mark of
Oxford University Press in the UK and in certain other countries
© Oxford University Press 2016
The moral rights of the authors‌have been asserted
First Edition published 2010
Second Edition published 2016
Impression: 1
All rights reserved. No part of this publication may be reproduced, stored in
a retrieval system, or transmitted, in any form or by any means, without the
prior permission in writing of Oxford University Press, or as expressly permitted
by law, by licence or under terms agreed with the appropriate reprographics
rights organization. Enquiries concerning reproduction outside the scope of the
above should be sent to the Rights Department, Oxford University Press, at the
address above
You must not circulate this work in any other form
and you must impose this same condition on any acquirer
Published in the United States of America by Oxford University Press
198 Madison Avenue, New York, NY 10016, United States of America
British Library Cataloguing in Publication Data
Data available
Library of Congress Control Number: 2016934362
ISBN 978–​0–​19–​874545–​7
Printed in Great Britain by
Ashford Colour Press Ltd, Gosport, Hampshire
Oxford University Press makes no representation, express or implied, that the
drug dosages in this book are correct. Readers must therefore always check
the product information and clinical procedures with the most up-​to-​date
published product information and data sheets provided by the manufacturers
and the most recent codes of conduct and safety regulations. The authors and
the publishers do not accept responsibility or legal liability for any errors in the
text or for the misuse or misapplication of material in this work. Except where
otherwise stated, drug dosages and recommendations are for the non-​pregnant
adult who is not breast-​feeding
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contained in any third party website referenced in this work.
 v

Preface to the
Second Edition
It has been more than 5 years since the first edition of the Oxford Handbook
of Paediatric Palliative Medicine. Reading back over the preface to that edi-
tion, it is striking both how much has changed and how much remains the
same. The distinctiveness of paediatric palliative care, both from other
areas of paediatrics and from our elder sister specialty in adults, is now
almost universally acknowledged and now manifests in specialist teams
based in hospitals and hospices, not only in the UK but increasingly across
the whole world.
It is still true, however, that, for many of those who find themselves hav-
ing to care for a dying child, it will be a rare event. The aim of this edition
of the book, as before, is to equip professionals (and perhaps even some
parents) to provide good basic palliative medicine, whether or not they
have had formal training or experience with dying children. Its main use will
be amongst teams based in hospitals, community paediatric teams, and pri-
mary care teams, particularly those who are linked to a children’s hospice.
Children’s palliative medicine encompasses symptom control but is not
limited to it. The book also considers the philosophy and models that sup-
port delivery of palliative medicine to children and also the communication
and coping skills needed by palliative care professionals. We have revised
many of the chapters, rewritten others, and even discarded some. We have
added a new chapter on intensive care and significantly expanded the clos-
ing formulary section, so that it now includes not only the drugs most used
in paediatric palliative care, but also guidelines for using them in symptom
control.
As before, if we have succeeded in our aim in writing it, the special use-
fulness of this handbook in paediatric palliative care, like other specialty
handbooks in the OUP series, is a combination of comprehensiveness and
portability. Our hope is that it will be an immediate and accessible resource
that will help facilitate the practical bedside delivery of effective palliative
medicine to children.

Richard D.W. Hain

Satbir Singh Jassal
2016
 vii

Contents

Symbols and abbreviations ix

1 Paediatric palliative medicine: philosophy

and practice    1
2 Models of paediatric palliative care   13
3 Ethics in palliative care   21
4 Pain: introduction   29
5 Pain evaluation   39
6 Pain: step 3, major opioids   47
7 Adjuvants   57
8 Nausea and vomiting   71
9 Gastrointestinal symptoms   83
10 Mouth care, feeding, and hydration   97
11 Dyspnoea 105
12 Neurological symptoms 113
13 Psychological symptoms 123
14 Skin symptoms 135
15 Palliative care emergencies 145
16 Malignant diseases 153
17 Specific non-​malignant diseases 159
18 Palliative care in intensive care environments 173
19 Practicalities around time of death 185
20 Religion and ritual 195
21 Bereavement 209
22 Communication skills 217
viii CONTENTS

23 Communication amongst professionals 223

24 Coping skills 231
25 Education and training 235
26 Formulary 239

Index 333
 ix

Symbols and abbreviations

7 approximately
± plus or minus
≥ equal to or greater than
≤ equal to or less than
> greater than
< less than
≡ equivalent to
% per cent
®
registered trademark
™
trademark
β beta
M website
ACE angiotensin-​converting enzyme
ACh acetylcholine
ACT Association for Children with Life-​threatening or Terminal
Conditions and their Families
ADHD attention-​deficit/​hyperactivity disorder
AIDS acquired immune deficiency syndrome
ALT alanine aminotransferase
APLS advanced paediatric life support
APPM Association for Paediatric Palliative Medicine
AST aspartate aminotransferase
bd twice daily
BiPAP bi-​level positive airways pressure
BNF British National Formulary
BNFC British National Formulary for Children
BP blood pressure
CaF Contact a Family
CD controlled drug
CDOP Child Death Overview Panel
cf. compare with
CIVI continuous intravenous infusion
CNIV chemotherapy-​induced nausea and vomiting
CNS central nervous system
COX-​2 cyclo-​oxygenase-​2 CH26
x SYMBOLS AND ABBREVIATIONS

CSCI continuous subcutaneous infusion

CSM Committee on Safety of Medicines
D2 dopamine receptor
DEXA dual-​energy X-​ray absorptiometry
DMD Duchenne muscular dystrophy
DNA deoxyribonucleic acid
DSM-​IV Diagnostic and Statistical Manual, fourth edition
EB epidermolysis bullosa
ECG electrocardiogram
ECP emergency care planning
EEG electroencephalogram
EMA European Medicines Agency
FBC full blood count
Fr French
GAG glycosaminoglycan
GFR glomerular filtration rate
GGT gamma-​glutamyl transpeptidase
GORD gastro-​oesophageal reflux disease
GP general practitioner
h hour
H+ hydrogen ion
H1, H2 two types of histamine receptors
HFA hydrofluoroalkane
HIV human immunodeficiency virus
HOOF home oxygen order form CH26
5HT 5-​hydroxytryptamine (serotonin; types 5HT1, 5HT2, etc.)
ICD International classification of disease
IQ intelligence quotient
im intramuscular
INR international normalized ratio
iv intravenous
K+ potassium ion
kcal kilocalorie
kg kilogram
L litre
MAOI monoamine oxidase inhibitor
MDI metered dose inhaler
mg milligram
MHRA Medicines and Healthcare products Regulatory Agency
 SYMBOLS AND ABBREVIATIONS xi

min minute
mL millilitre
mmol millimole
MPS mucopolysaccharide
NaCl sodium chloride
NB nota bene (take note)
NCA nurse-​controlled analgesia
NCL neuronal ceroid lipofuscinosis
NG nasogastric
NHS National Health Service
NICE National Institute for Health and Care Excellence
NICU neonatal intensive care unit
NIPPV non-​invasive positive-​pressure ventilation
NMDA N-​methyl D-​aspartate
NSAID non-​steroidal anti-​inflammatory drug
od once daily
OME oral morphine equivalent
PaCO2 arterial carbon dioxide tension
PCA patient-​controlled analgesia
PDE principle of double effect
PEG percutaneous endoscopic gastrostomy
PICU paediatric intensive care unit
PKU phenylketonuria
po orally, by mouth (per os)
PPI proton pump inhibitor
PPM paediatric palliative medicine
PONV post-​operative nausea and vomiting
pr rectally (per rectum)
PRAC Pharmacovigilance Risk Assessment Committee
prn pro re nata (as required)
PRP personal resuscitation plan
qds four times daily
RCPCH Royal College of Paediatrics and Child Health
s second
SaO2 oxygen saturation
sc subcutaneous
SMA spinal muscular atrophy
SSRI selective serotonin re-​uptake inhibitor
SVC superior vena cava
xii SYMBOLS AND ABBREVIATIONS

tds three times daily

U&E urea and electrolytes
UK United Kingdom
US United States
WFI water for injection
WHO World Health Organization
w/​v weight by volume
 Chapter 1 1

Paediatric palliative
medicine: philosophy
and practice

Introduction 2
History 3
Definition 4
Practical applications 5
Balance of harm and benefit 6
A rational approach: reforming the ‘medical model’ 7
Multidimensionality (‘holism’) 9
Summary of paediatric palliative medicine 11
2 Chapter 1 Philosophy and practice

Introduction
This chapter will consider:
• a brief history of palliative care in children;
• a definition of palliative care in children;
• how that might need to be worked out in the practical care of children
with life-​limiting conditions.
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