i

To Comfort Always
ii

Oxford Medical Histories Series

This title from the Oxford Medical Histories series is designed to bring to
a wide readership of clinical doctors and others from many backgrounds
a comprehensive text setting out the essentials of the history of palliative
medicine. Volumes in this series are written by medical experts and with
doctors, in particular, in mind as the readership.
History describes the knowledge acquired over time by human beings. It
is a form of storytelling, of organizing knowledge, of sorting, and giving
impetus to information. The study of medical history, just like the history
of other human endeavours, enables us to analyse our knowledge of the past
in order to plan our journey forward and hence try to limit repetition of our
mistakes—​a sort of planned process of Natural Selection, described as being
in the tradition of one of the most famous of medical historians, William
Osler. Medical history also encourages and trains us to use an academic
approach to our studies, which thereby should become more precise, more
meaningful, and more productive. Medical history should be enjoyable too,
since that is a powerful stimulus to move forward, a fun thing to do both
individually and in groups.
The inspiring book that led to this series introduced us to clinical neurology,
genetics, and the history of those with muscular dystrophy. Alan and Marcia
Emery explored The History of a Genetic Disease, now often styled Meryon’s
disease rather than Duchenne Muscular Dystrophy. The first to describe a
disease process is not necessarily the owner of the eponym but the Emerys are
helping put that right for their subject, Edward Meryon. The second book in
the series, on radiology, took us on a journey round a world of images.
Thus future volumes in this series of Oxford Medical Histories will continue
the journey through the history of our bodies, of their relationship to our
environment, of the joyful and the sad situations that envelope us from our
individual beginnings to our ends. We should travel towards other aspects of
our humanity, always leaving us with more questions than answers since each
new discovery leads to more questions, exponential sets of issues for us to
study, further thoughts and attempts to solve the big questions that surround
our existence. Medicine is about people and so is history; the study of the
combination of the duo can be very powerful.

Christopher Gardner-​Thorpe, MD, FRCP, FACP

Series Advisor, Oxford Medical Histories
iii

To Comfort Always
A history of palliative
medicine since the
nineteenth century

David Clark
Professor of Medical Sociology and
Wellcome Trust Investigator, School of Interdisciplinary
Studies, University of Glasgow, UK

1
iv

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v

Foreword

It is truly a privilege to be asked to write the foreword to To Comfort Always.

Professor David Clark is already well known to those working in palliative
care for his insights into the development of the modern hospice movement
and particularly for his evaluation of the role of Dame Cicely Saunders in this
over the course of the second half of the twentieth century. In ‘To Comfort
Always,’ David looks at a much wider span of history, covering a period of
nearly two centuries. He rigorously examines developments in the meaning
of a good or peaceful death (the original meaning of euthanasia) and develop-
ments in the delivery of palliative care across the world.
I have been fortunate to witness many of the developments in palliative
medicine and end-of-life care in the United Kingdom over the past 40 years.
My father, a GP in Oxford, helped to establish the Sir Michael Sobell Hospice
when I was a medical student in the 1970s. During my training as a medi-
cal oncologist, Robert Twycross kindly encouraged me to spend time at the
hospice, which was of enormous value to me. Later, when I was appointed
Professor of Palliative Medicine at Guy’s and St. Thomas’, Cicely Saunders
made my appointment conditional on going to Canada to learn from Eduardo
Bruera, then in Edmonton, and from Balfour Mount in Montreal. I owe each
of them a debt of gratitude, so I am delighted to see their prominent roles in
To Comfort Always. During my time at Guy’s and St Thomas’ I was also fortu-
nate to work alongside colleagues at Trinity Hospice in Clapham (The Hostel
of God in Chapter 2) and at St Christopher’s. I have learned a great deal from
them.
To Comfort Always starts with an assessment of the role of nineteenth-cen-
tury doctors in the care of the dying. As David Clark points out, this was a
period of widespread industrialization, urbanization, and population growth
in Europe. The causes of death were also changing from infection and dis-
aster to cancer and tuberculosis, with dying therefore commonly becoming
protracted. Religion still played an important role in Victorian attitudes to
death—i.e. that it should occur at home preceded by farewells, devotions,
and prayers. The nineteenth century was also marked by medical advances,
which included the isolation of morphine and the invention of the hypoder-
mic syringe.
vi

vi Foreword

However, although nineteenth-century doctors were often involved around

the time of death (at least for more affluent patients), relatively few wrote
about it. There were some notable exceptions, whose insights are illuminat-
ing. Although I had heard of Munk in the context of Munk’s Roll at the Royal
College of Physicians, I was not previously aware of his book Euthanasia,
referring to an easeful death. These important early works demonstrate the
evolution of thinking about medical care for the dying and are beautifully
chronicled.
Equally fascinating is the assessment of the role of ‘proto-hospices’ in the
late nineteenth and early twentieth centuries. Although I had been aware of
a number of these homes for the terminally ill, I had not realized that they
had been established with little knowledge of each other in France, Ireland,
London, Sydney, New York, and elsewhere. Interestingly, they were all
founded by women. A key feature was that they saw saving souls as a top
priority and focused their attention on the respectable poor who were within
a few months of death.
The advent of the National Health Service in the United Kingdom in 1948
represented a major shift from provision of healthcare by charities to the
state. Interestingly, this led directly to the establishment of the Marie Curie
Foundation, whose key aim was to deliver end-of-life care in locations other
than hospitals. The early and mid 1950s also saw an important shift towards
gathering evidence of the needs of patients approaching the end of life and to
detailed studies by Cicely Saunders of the care given to such patients.
The later chapters of the book chart the emergence and growth of palliative
care in the United Kingdom and around the world. This has not, of course,
been confined to care delivered in hospices, but also includes hospital support
teams, specialist nurses, and education programmes. The establishment of
the Association of Palliative Medicine and its recognition as a specialty for
medical training were both pivotal moments, which came about through the
dedication of a small group of passionate clinicians. Subsequently, the World
Health Organization, international congresses, and palliative care associa-
tions have helped to spread developments across the world.
Despite all of the progress of the last two centuries, much more remains
to be done. We know that many patients even in countries with the most
advanced palliative care provision are still not dying well. This is especially,
but not exclusively true for those dying in hospitals. We can and we must do
better. Clinicians, health service managers, and policy-makers all have roles
to play in this.
vii

Foreword vii

I thoroughly recommend this book to anyone working in the fields of hos-

pice care, palliative care, and/or end-of-life care—the definitions still cause
difficulties! It will give insights to others as it has done for me. Learning from
the past should help us all to consider how to do better in the future.

Professor Sir Mike Richards

Chief Inspector of Hospitals,
Care Quality Commission, UK
May 2016
viii
ix

Preface

This book is the first to chart in detail the history of palliative medicine, from
its origins in the nineteenth century to its recognition and consolidation in
the twentieth century, and onto the challenges it faces today. It draws on a
large body of published and unpublished sources, interviews with key indi-
viduals in the field, and my accumulated knowledge as one who has been
active in palliative care research and education since the late 1980s. I hope
that To Comfort Always will be essential reading for specialists in palliative
medicine everywhere, and of significant interest to other professionals and
volunteers working in palliative care across different services and settings. In
addition to exploring the challenges, achievements, and dilemmas faced by a
new medical specialty in the late twentieth and early twenty-​first centuries,
the book also has several things to say about the care of the dying and those
with advanced disease. Indeed, it is a book about a public health challenge, to
which medicine as a whole should give high priority in the coming decades.
In 1987, the specialty of palliative medicine gained formal recognition in
the United Kingdom—​t he first country in the world to accredit this new field
of medical practice. The achievement however built on at least 100 years of de-
veloping experience in which modern medicine, albeit reluctantly at first, gave
growing attention to the needs of people with advanced and incurable dis-
ease. One hundred years earlier, in 1887, the London-​based physician William
Munk had published his groundbreaking work on ‘easeful death’, setting out
a case for the skilled and sympathetic care of the dying patient. Over the next
half-​century, other prominent physicians and surgeons—​including Herbert
Snow, William Osler, and Alfred Worcester—​wrote eloquently on the same
subject. However, in Britain, the influence of these pioneers was limited and
care of the dying remained a neglected field of medicine. A mere handful
of terminal care homes and hospices, isolated and undeveloped, showed any
consistent interest in the problem of suffering at the end of life.
After World War II, interest in the terminal care of people with cancer
began to increase. Evidence of poor care, late involvement, and fatalistic at-
titudes on the part of patients and professionals painted a depressing picture.
Meanwhile, the medical writings of the time confirmed a sense of limited
skills, few educational opportunities, and a lack of focused effort to improve
terminal care. When Cicely Saunders published her first paper in 1958, the tide
x

x Preface

began to turn. Her extensive writing, teaching, and advocacy over the next
decade galvanized support—​from clinicians, charities, health administrators,
and the wider public. By the late 1960s and the opening of St Christopher’s
Hospice in south London, a modern movement was getting underway in
Britain that would quickly have an international influence. The implications
for medicine were far-​reaching. Hospices increased in numbers, and at the
same time, the practices they embodied spread to other settings, in Britain
and beyond, where the term ‘palliative care’ was often used to describe them.
By the late 1980s, three factors were conjoining to build a platform for the
broad consolidation of the new field of activity in the United Kingdom: a
medical association was formed to support its practitioners; a scientific jour-
nal was established; and recognition was given to palliative medicine as an
area of specialization. Initially a subspecialty of general medicine on a seven-​
year ‘novitiate’, in due course palliative medicine successfully became a spe-
cialty in its own right.
A period of rapid expansion and diversification ensued. In the United
Kingdom, the new palliative physicians were trained to practice in any set-
ting. Many chose not to work in independent hospices, but to develop provi-
sion across the National Health Service; and in particular, in acute hospitals
and in the community. Cancer charities made significant investment in new
posts and services. Teaching programmes and research activity started to
expand. In university medical schools, senior lecturers, and the first profes-
sors in palliative medicine began to appear. In turn, there was greater policy
interest, special funds to support palliative care, and burgeoning enthusiasm
for extending the model to people with all life-​threatening conditions, re-
gardless of diagnosis.
At the same time, there were controversies and dissensions. Both inside and
outside the field, questions were being asked about the nature of the new spe-
cialty, and the wider role it might play. Was its focus only on the last days of
life? Could it migrate ‘upstream’ to earlier stages of disease progression? What
evidence existed for its efficacy? Could it be taken seriously by other speci-
alities? Did it risk an over-​concentration on pain and symptom management
and consequent loss of focus on ‘holistic’ care? What role could the specialty
play in contributing to controversial ethical issues about the ‘right’ to die,
euthanasia, assisted dying, and end-​of-​life sedation?
Many of these questions led to debate in an international context.
Palliative medicine specialists were now to be found meeting with col-
leagues from other countries. Collaborations of various types began to
develop—​in education, research, and in advocating for palliative care de-
velopment at the national level. Across world regions and jurisdictions,
xi

Preface xi

associations were formed to promote palliative care development, often

involving leading doctors from the specialty. Endorsement came from the
World Health Organization, as well as from international medical associa-
tions in cognate fields.
By the early twenty-​first century, palliative medicine had made huge strides.
However, development around the world remained patchy and there was clear
evidence of a tidal wave of global need in the coming decades resulting from an
ageing population and a predicted rise in the annual number of deaths. Could
palliative medicine provide the expertise and leadership that would be neces-
sary in the face of such demands? This book addresses these issues.
Here are a few points to guide the reader. The book begins from a primar-
ily British perspective, but takes on more international and global dimen-
sions as the narrative unfolds. This is the history of a specialty that is still
emergent in many parts of the world and to that extent it must be a work in
progress. I seek to document that specialty’s evolution from the nineteenth
century, when doctors began giving sustained attention to the manage-
ment of pain and its associated symptoms at the end of life. I try to show
the ambivalent orientation of modern medicine to care when disease is
no longer curable. In turn, I examine how a focus on the idea of palliative
care gained ground, sought recognition, and translated into a burgeoning
field with services and critical mass in many countries of the world. I have
been fortunate to be able to draw on oral history interviews with a number
of key palliative care activists to illustrate some of this. The focus of the
book concentrates in the period 1887–​1987. In the opening chapter, I stray
into the earlier periods of the nineteenth century. In the later chapters,
I have inevitably attended to issues from the end of the twentieth and be-
ginning of the twenty-​fi rst centuries—​but readers should note that I have
not attempted a full review of developments in palliative care in these more
recent decades. Please see other works by myself for specific commentaries
on some of these issues.
‘To comfort always’ is a phrase sometimes attributed to Hippocrates and is
closely associated with Dr Edward Livingston Trudeau, founder of an early
American tuberculosis sanatorium. It seems a fitting title for this book and
has much to commend it as a guide to care, not only at the end of life, but
wherever human suffering occurs.
David Clark
Dalswinton, Dumfriesshire
November 2015
xii
xiii

Acknowledgements

I am grateful to the several friends, scholars, students, and palliative care ac-
tivists who, over many years, have influenced my thinking on the matters
contained in this book. I make special mention of David Field, Tony Walter,
Sam Ahmedzai, Bill Noble, Marcia Meldrum, Joy Buck, Michael Wright,
Neil Small, Nic Hughes, Sara Denver, Mary O’Brien, Jane Seymour, Michelle
Winslow, Kathleen Foley, Mary Callaway, David Praill, the late Cicely
Saunders, the late Eric Wilkes, David Oliviere, Barbara Monroe, Margaret
Jane, Lynne Hargreaves, Audrey Clowe, Stephen Connor, Isobel Broome,
Clare Humphreys, Ruth Ashfield, Avril Jackson, Denise Brady, Kjell Erik
Stroemskag, Tom Lynch, Derek Doyle, Orla Keegan, Javier Rocafort, Henk
ten Have, Anne Grinyer, Anthony Greenwood, Lars Johann Materstvedt,
Suresh Kumar, Robert Twycross, Reena George, Trgvye Willer, Philip Larkin,
Bert Broeckaert, Jim Hallenbeck, Balfour Mount, Jim Cleary—​and the Lego
Palliateurs.
Carlos Centeno at the University of Navarra, where I am privileged to be
a visiting professor in the Faculty of Medicine, has in particular been a huge
source of deep inspiration and friendship to me over many years; he has always
encouraged my interest in the history and ‘intangibles’ of the field of palliative
care, as well as our collaborations in studying its current development.
The Wellcome Trust supported my early work on hospice and palliative care
history with some key grants in the 1990s; and this book has been concluded
during the period of a Wellcome Trust Investigator Award. I wish to thank
everyone involved at the Trust for the support, enthusiasm, and endorsement
that have been so crucial to this area of my work over an extended period. I am
also indebted to my Wellcome Trust-​funded colleagues at the University of
Glasgow—​Catriona Forrest, Hamilton Inbadas, Rachel Lucas and Shahaduz
Zaman—​along with Naomi Richards, Sandy Whitelaw, Clare Roques and
Jackie Kandsberger for their collegiality, inspiration, and constant enthusiasm.
At various points I draw on oral history interviews collected from palliative
care activists around the world. I thank all those who have contributed to the
creation of this archive, which continues to grow as a document of record for
hospice and palliative care development in many places. I have been pleased
to see such approaches used in the work of others, who have written about
xiv

xiv Acknowledgements

the history of palliative care in other countries—​Norway1 and Poland,2 for

example.
I have also drawn on some archival sources, which I gratefully acknowl-
edge here. Most of my work on the papers of Cicely Saunders, including
their initial cataloguing, took place before they were consolidated at King’s
College London Archives; I am grateful to Chris Olver, who undertook this
extensive work, for his help and assistance on a number of occasions, and for
his ongoing interest in the life and work of Cicely Saunders. The extensive
Saunders archive now available at King’s College London is a rich treasure
trove indeed. I am also grateful for access to material located in the Imperial
College Healthcare NHS Trust Archives, The National Archives, and the ar-
chives of St Joseph’s Hospice, Hackney.
Finally, I thank my wife, Fiona Graham—​for the countless conversations,
debates, and deconstructions we have enjoyed on the always-​intriguing ques-
tion of ‘what is palliative medicine?’

Notes
1. Strømskag KE (2012). Og nå skal jeg dø. Hospicebevegelsen og palliasjonens historie i
Norge. Oslo, Norway: PAX forlag.
2. Janowicz A, Krakowiak P, Stolarczyk A (2015). In Solidarity: Hospice-​Palliative Care
in Poland. Gdańsk, Poland: Fundacjahospicyjna.
xv

Contents

Abbreviations xvii

1 Nineteenth-​century doctors and care of the dying 1

2 Homes for the terminally ill: 1885–​1948 33
3 Interest and disinterest in the mid-​t wentieth century 59
4 Cicely Saunders and her early associates: A kaleidoscope
of effects 85
5 Defining the clinical realm 117
6 Specialty recognition and global development 149
7 Palliative medicine: Historical record and challenges
that remain 197

Index 227
xvi
xvii

Abbreviations

ABHPM American Board of Hospice IHI International Hospice

and Palliative Medicine Institute
ABMS American Board of Medical IoM Institute of Medicine
Specialities IOELC International Observatory
ACGME Accreditation Council of on End of Life Care
Graduate Medical Education JCHMT Joint Committee on Higher
AMA American Medical Medical Training
Association LCP Liverpool Care Pathway
APCA African Palliative Care MRCP Member of the Royal College
Association of Physicians
APM Association of Palliative NCI National Cancer Institute
Medicine
NHS National Health Service
BBC British Broadcasting
Company RACP Royal Australasian College
of Physicians
BMJ British Medical Journal
SCM Student Christian
CSCI Continuous subcutaneous Movement
infusion
SHO Senior House Officer
EAPC European Association for
Palliative Care TB Tuberculosis

IAHPC International Association of US United States

Hospice and Palliative Care UK United Kingdom
IASP International Association for WHO World Health
the Study of Pain Organization
xviii
1

Chapter 1

Nineteenth-​century doctors
and care of the dying

Figure 1.1 CFH Marx (1796–​1887)

Marx’s thesis of 1826, presented at the University of Goettingen,
explored the role of the doctor in producing ‘euthanasia’—​a
peaceful death. It was not until the end of the nineteenth century
that ‘euthanasia’ came to denote the deliberate ending of life or
hastening of death by medical means. The carefully documented
clinical observations of Marx were maintained in the writings of other
nineteenth-​century doctors, who succeeded in setting out some of the
principles that were later to embody the practice of what came to be
known as palliative medicine.
Reproduced from Wellcome Images, http://​catalogue.wellcomelibrary.
org/​record=b1181192, Image ID: L0025130, Copyright © 2016 Welcome
Library, London.
2

2 To Comfort Always

Demographic change and the consequences

for dying and death
By the late nineteenth century, the people of Europe and North America
were living longer in societies of rapidly increasing size. A transformation
of unprecedented proportions had brought widespread industrialization, ur-
banization, geographic mobility, the rise of scientific rationalities, political
and ideological upheaval, and a growing questioning of religious values. The
population of Europe had doubled during the course of the century, from
200 million to 400 million. Mortality rates were falling and the prospects of
living into old age began to increase for many people. Nevertheless, with the
benefits of longevity and the diminished threat of early death came particu-
lar consequences and repercussions. The predominant causes of death had
started to shift—​from sudden demise brought on by infection, disaster, and
plague, to protracted dying associated with the emerging chronic diseases of
the modern era, not least of which were cancer and tuberculosis. Whereas in
Europe during the Middle Ages, the death that came too swiftly was some-
thing abhorrent and to be guarded against, now fears began to grow about
lengthy dying and the suffering that it might entail.

The changing social world of the dying

Popular culture and Victorian fiction1 presented idealized images of a slow
and controlled farewell to the world, with family members gathered around
the dying person’s bedside and a sense of shared confidence in the immi-
nent passage to a better world—​t he good death as a sign of coming salvation.
However, by the later years of the century, concerns were emerging about the
precise manner of dying, now coming to be seen not only as a social and cul-
tural event, but also as a medical process. Strict rules existed for how to behave
after a death occurred. Yet, there appeared to be less confidence in people’s
dispositions towards the act of dying. The changing personnel around the
deathbed, a new secrecy about the imminence of death, as well as the desire
to quell the threat of pain and suffering—​a ll revealed a growing anxiety about
the dying process. That in turn opened up a space for medical intervention,
which first took hold towards the end of the nineteenth century, but was to
have implications for more than a hundred years thereafter, indeed right up
to the time of this book’s writing in 2015.
For the French historian Phillipe Ariès, the nineteenth century was associ-
ated with the emergence of sentimental orientations to death that reflected
major changes within the culture and structure of family life.2,3 He argued
that as the meaning of family relationships deepened and became more
3

The changing social world of the dying 3

nuanced, so parting with a dying relative—​and the subsequent grief follow-

ing that loss—​became increasingly emotional and expressive. A growing em-
phasis fell on the personal pain of separation and on keeping the dead alive in
memory, enhanced by new developments in photography that enabled care-
fully staged post-​mortem images to be captured and preserved for posterity. It
also meant elaborate rituals of mourning and funeral observance, along with
the emergence of the cult of the grave as a family resting place. Undoubtedly
it led to new representations of the deathbed itself. The wider Romantic move-
ment contributed to notions of the ‘beautiful death’, to la mort de toi (‘thy
death’), personified in the death of a loved one.
Ariès also describes how in the nineteenth century the rise of modern sci-
ence brought challenges to religious authority, and specifically to the neces-
sity of dying in the presence of the official representatives of formal religion.
Medical men began to replace priests, clergy, and ministers at the bedsides
of the dying. However, this created new dilemmas; for if the role of medicine
was to focus on the technical preoccupations of attending to the relief of pain
and the easing of physical distress, who was to address the fears of the dying,
the distress of the bereaved, and the achievement of the ‘good death’? Using
this point of reference, we might see this as the period in which dying was
drained of meaning by science and medicine, forcing its retreat from public,
religious, and family dimensions into the sequestered spaces of hospitals and,
ultimately, homes for the terminally ill. For Ariès, the mid-​nineteenth cen-
tury was also the origin of ‘the lie’ wherein the gravity of the dying person’s
situation was kept from them. Death was on the way to becoming something
‘shameful and forbidden’.
Later historians and sociologists have questioned Ariès’s linear conceptual-
izations. There are assertions that he relies on superficial readings of material
relating mainly to the upper and middle-​class elite, and that the experiences
of working-​class families and communities are misrepresented, or obscured
in his grand narrative. He is also accused of romanticizing a bygone era and
somehow caricaturing death in the twentieth century as anonymous, re-
pressed, and pathological. From the perspective of Ariès’s critics, there was no
golden age of grief that was subsequently ‘ruined’ by the scientific and medi-
cal discourses of modernity.4 As Julie-​Marie Strange puts it, ‘the Victorian
culture of death is a myth of our own making’.5 Perhaps it is better therefore
to regard those living in the nineteenth century as no more and no less skilled
than their forebears or successors in dealing with the experiences of dying,
death, and bereavement.
The encounter with death is universal and as human beings we all know
that we must die, but in every age and culture there are variations in how we
experience our mortality—​and our dying. There may be tendencies towards
4

4 To Comfort Always

the framing of death as a uniquely personal experience for both the dying
and the bereaved, and something requiring individualized adjustment. Other
discourses put a strong emphasis on the place of death in society, its impact
on social cohesion, and the legal, public, and policy consequences of dying
and bereavement. In some contexts, discourses of religion may dominate; in
others, the perspectives of science and humanism, even historical material-
ism, may hold greater sway. Using this approach, historians have argued for
understanding death through the cultural values that shape how we describe
it, rather than seeking to uncover any particular ‘truths’ about how we experi-
ence it. This is an important consideration for our focus here. There are incon-
trovertible ways in which our ability to care for dying people has improved
and become more sophisticated in the period since the late nineteenth cen-
tury. Nevertheless, we should beware the assumption that this means there
can be wholesale improvement on the way death was managed in the past.
The shift of dying from the social, community, and family realm to become
the preserve of specialists, professional carers, and service providers of vari-
ous types should not mask the fact that death remains a profoundly social
experience. Reforming the social component is a far more challenging goal
than, for example, improving the technologies of pain relief. When death
becomes a matter of public debate, dissension is not far away. As we shall
see in Chapter 7 of this book, death in the contemporary world has become
a contested space, in which the interventions of palliative medicine are only
one set of forces at play—​and one not always welcomed unequivocally. As we
delve into the historical record, it becomes clear that since at least the late
nineteenth century, medicine has had a problematic relationship with death
that is still far from resolved.

Experiences at the bedside: Representations

of the dying patient and the grieving family
There is a certain amount of scholarship on nineteenth-​century care of the
dying in Europe and North America, beginning with research on the cultural
aspects of death, dying, and bereavement, particularly the experiences of elite
groups in society. This has led to encouraging signs of further interest in these
topics that has taken us into the lives not just of lettered and literate affluent
families, but also alongside the end-​of-​life experiences of people in poor com-
munities, and those in both rural and urban environments.
In Britain, our understanding of the Victorian culture of dying and the place
of doctors and families within it derives from a small number of historical
studies, each with a specific focus. Outstanding among these is the work of Pat
5

EXPERIENCES AT THE BEDSIDE 5

Jalland,6 who not only surveys the characteristics of medical practice for those
at the end of life, but also takes us to the bedsides of the dying—​at least in upper
middle-​class families7—​to show how the rituals and practices associated with
dying and death were shaped by wider Victorian values and beliefs. Jalland
shows how the role of religion is key. It circumscribed the cultural terrain of
dying, emphasizing the need for unwavering faith, a sense of humility, and a
readiness to submit to the will of God. By these means, the good death could be
achieved. If this meant bearing prolonged agonies of physical suffering, then
this itself was a spiritual test that might result in everlasting life. Protracted
dying was also an opportunity to rekindle a lost Christian faith or indeed to
give one’s soul to Christ for the first time. Specifically, a powerful influence was
brought to bear by the evangelical movement, which shaped Protestant dying
around a script of atonement from sin, for which the final moments of life were
a final opportunity to avoid everlasting torment. Such narratives found their
way into widely distributed tracts, magazines, and memoirs. They were eagerly
read and did much to influence popular beliefs about the appropriate manner
of dying. As Jalland describes, these perceptions were echoed uncannily in
the private correspondence, diaries, and deathbed memorials of middle and
upper-​class families in England, a finding made all the more powerful because
these writings were often produced close to the time of the events and under
the influence of intense emotion as death approached. The key difference that
Jalland found between the two sets of texts—​the public and the private—​was
that the latter were often remarkably frank about moral weaknesses, unpleas-
ant symptoms, or ‘unworthy’ deathbed behaviour, elements usually expunged
from the more widely published accounts.
What was clear, however, were the constituent elements of Victorian evan-
gelical death: place, practice, and temporality. Death should occur at home,
preceded by carefully orchestrated farewells, devotions, and prayers. The dying
person should be awake, lucid, and able to seek forgiveness for past transgres-
sions. Pain should be borne with fortitude and welcomed as a final test of fitness
for heaven. Death in this manner was becoming an intensely private affair, a
reaction against the public dying before a crowd that had been known in Britain
and France in the eighteenth century and which persisted into the late nine-
teenth century for royalty and famous statesmen. Nevertheless, the evangelical
good death also had its didactic elements and could be used as a stimulus to the
devout and a cautionary example to the unbeliever, presuming at least a limited
audience. For if the good death was not achieved, then eternal damnation might
follow, and that was a message to promulgate beyond the deathbed itself.
Jalland demonstrates clearly that these idealizations of the good death were
significantly eroded in the period from 1870 to 1914, as evangelical fervour
6

6 To Comfort Always

waned within society. With the declining influence of religion, concern for
the soul was less demonstrated, and this led to an increasing preoccupation
with matters of pain and other symptoms. The balance was slowly swing-
ing away from a primary concern with the state of the soul in the final days
of life, towards a greater emphasis on the body that was free from physical
suffering. Linked to this was a new evaluation of sudden death—​once feared
because it denied a chance of preparation for the next world, now at least cau-
tiously welcomed as it obviated any fear of impending demise and a life taken
away. Jalland sees this as the key condition, merely a short step away, which
led to the practice of deliberately withholding knowledge of their fate from
dying people. Out of this crucible of change, she points the way to the modern
twentieth-​century death, which attenuated the role of faith and amplified the
importance of pain and symptom relief, while at the same time diminishing
the role of the clergy and, to some extent, the family, replacing them with an
increasing emphasis on the sayings and doings of doctors.
Julie-​Marie Strange has contributed a perspective on working-​class grief and
mourning8 in northern England over the period 1870–​1914, precisely identified
by Jalland as the time in which the foundations of the Victorian evangelical
death began to shift. In acknowledging the paucity of historical research on
this subject, Strange notes two points. First, the working classes left little cor-
respondence or memoirs that might illuminate their experiences of dying and
death, making this a challenging area for researchers. Second, she questions the
assumption that grinding poverty, high mortality, and poor living conditions
might have somehow created a sense of fatalism or resignation about death
among poorer social groups, which perhaps made death less consequential for
day-​to-​day life. Her focus is in a period when living standards were rising, at-
titudes to poverty were changing, mortality rates were declining, and access to
medical care was increasing. Strange presents a rich picture of working-​class
attitudes and practices in the face of death. She shows how many accounts
from the period reveal a sense of openness and pragmatism, in contrast to the
growing veil of secrecy described by Jalland. However, when money was tight,
it was common to prioritize subscriptions to the funeral club over payment for
medical care. This was offset by a major investment of time and effort by family
members and neighbours in informal networks of care for the sick and dying.
Strange quotes Florence Bell’s moving account of care among impoverished
ironworkers in Middlesbrough, in the industrial north east of England:

In one case, the husband, an ironworker, had been ill with rheumatic fever and
pneumonia, the wife with consumption—​both hopelessly ill; the husband died first,
and the kindly neighbour … offered to take in the dying woman, who shrank from
going to hospital. She took the invalid into her house and when the mother died,
adopted the child.9
7

EXPERIENCES AT THE BEDSIDE 7

Strange found in her studies the pervasive influence of stories about atten-
tive care and self-​sacrifice. Families sought to hold onto their sick and dying
members; they often equated hospitals with almshouses and places of stigma;
and there was a belief that the care provided in such institutions would not
match that available at home. However, at the same time, the protracted death,
apparently idealized by wealthy families up until the 1870s, was feared as a
further drain on limited resources. Illness brought unemployment, reduced
income, and the need to expend more on the sick person, including medical
bills. Death not only hurt the emotions, but also the family coffers. In such
circumstances, the resilience and fortitude described by Strange is remark-
able. Nor were there many options for the relief of pain and suffering, other
than the use of alcohol, the companionship of close ones and, for those who
could afford it, the prescription of morphine by the doctor. Strange observes
that in contrast to the evangelical convictions of Jalland’s early Victorians,
the working classes of the later period seemed to favour an all-​forgiving god
of mercy. They casually overlooked obligations to a god of judgement, and
thus left the deathbed free from last-​minute conversions and prayers for the
forgiveness of sin.5
To these observations can be added the work of D. P. Helm,10 who sets out
to understand the beliefs, motivations, and influences that shaped the care of
the dying in the Victorian home, in an age immediately prior to the growth
of hospitals and the subsequent shift of death from the home to the institu-
tional setting. His focus is on data from three of England’s rural counties
(Gloucestershire, Herefordshire, and Worcestershire), and his attention is
with families of the ‘middling sort’—​in other words, somewhere in-​between
those contexts described by Jalland and Strange. Helm shows how the key
professional nexus in this regard was that of the clergy, nurses, and doctors,
and he seeks to identify the currents of change that transformed care of the
dying in the Victorian period. This study presents evidence from diaries, let-
ters, novels, and the visual arts to suggest that family members’ central role
in the decision-​making process, and in providing care, allowed them to draw
on shared emotional and psychological support and derive comfort from re-
ligious beliefs held in common. The wider community of friends, neighbours,
extended family, and the many middle-​class women who undertook to visit
the sick as a Christian duty, all provided further support to carers.
Throughout the nineteenth century, Christianity still provided the frame-
work within which most people in British society understood death. Christian
end-​of-​life care was focused on spiritual preparation and gave the dying re-
spect and a dignity conferred by their perceived proximity to God. For the
carers, Helm argues, the emphasis on preparedness provided them with a
comforting role—​for example, in praying and reading from scripture with
8

8 To Comfort Always

the dying, when otherwise they could feel impotent in the face of untreatable
bodily suffering. Contrary to suggestions that Christians disapproved of pain
relief, the evidence from Helm’s work suggests that analgesia was mostly wel-
comed once available, but when pain was encountered, Christian teachings
about its purpose were drawn upon as a source of consolation and strength.
Although doctors were becoming increasingly influential in end-​of-​life care
through an increase in their professional status and an improving ability to
provide effective pain management, Helm contends that they did not exer-
cise the levels of authority and control over the domestic deathbed that they
later came to assume in the hospital setting. These limitations on the doctor’s
influence can be observed in the process of negotiation through which diag-
noses were arrived at, frequently involving recourse to second opinions, and
through the constraints imposed by the lack of effective treatments. Finally,
Helm challenges the persistent preconception that the Victorians were mor-
bidly obsessed with death, suggesting instead that the Victorian response to
death should be seen as both pragmatic and rational, given the prevalence of
death in society and the changing nature of religious and medical practice.
We also have evidence of nineteenth-​century homecare of dying people in
the German context, gleaned from research that focused on the work of dea-
conesses associated with the diaconal centre at Kaiserswerth, near Düsseldorf.
In the training of these deaconesses of Kaiserswerth, the nursing of the soul—​
caring for the spirit of the sick person—​was given equal importance to care
of the physical body. After finishing their training in the motherhouse, the
deaconesses were sent to hospitals and into parishes and private care in many
German cities. Their letters, written back to the motherhouse, offer insight
into their experiences of caregiving in domestic settings. Karen Nolte11 has
provided an analysis of these experiences, which we can place alongside other
depictions of nursing care of the terminally ill in Britain and America. This
also gives insight into the forms of institutional care of the dying that were to
develop from the late nineteenth century, and to which we turn in Chapter 2.
Sometimes, the mere presence of a nurse appeared to have had a soothing
effect on the sick and their families. The Kaiserswerth sisters took care not only
of the patients, but also of their family members. They cooked for husbands,
children, and siblings, and provided personal and religious support for them.
In administering pain relief, the nurses bore a great responsibility, which
sometimes led to conflicts with the physician in charge. Some felt themselves
better equipped than the attending physician to decide how much morphine
a patient needed and at what time, while others seem to have administered
morphine with considerable discretion. Nursing the soul became particularly
significant once the doctors had no more to offer and the nurses could do little
9

EXPERIENCES AT THE BEDSIDE 9

more with physical care. Nevertheless, even deeply held beliefs could be chal-
lenged by the severity of suffering. One particularly haunting report on the
care of a woman with abdominal tumours appeared to trigger a crisis of faith,
not only in the nurse, but also in the dying woman and her husband.
The Kaiserswerth nurses were expected to establish a professional distance
between themselves and the patient’s family. They were urged not to eat with
the family, not to accept personal gifts, and to wear the required deaconess
habit at all times. They were also expected to leave the family as soon as their
care was no longer needed. In the event of death, the nurse was permitted to
stay through to the funeral, but she had to travel back to the motherhouse or
to her next location immediately afterwards. Nolte observes that, at times,
the way the deaconesses dealt with the deaths of their patients appeared
rather technical and pragmatic—​for example, in letters to the directors in
Kaiserswerth, they gave estimates on how long it might take for a patient to
die so that they could then leave. During their training period, the sisters were
prepared for the care of the terminally ill in a ‘Course of Medicine’, which
covered in detail the special physical care requirements of the dying. The
sisters were expected to stay with the dying person continuously and allevi-
ate the process by regularly washing and drying, turning, and repositioning
the patient. However, spiritual care predominated and, as Nolte reports, the
medicine course handbook stated the following:
The beautiful and sacred task of nursing not only in its seriousness, but also in its
full meaning and importance is brought to bear at the bed of the dying. When the
physician can help no longer, the love of the nurse is still working indefatigably,
standing by the dying person with a caring hand and a gentle mind in the hour of
strife and dissolution to bring him relief and consolation. She almost doubles her
diligence and loyalty and her concern reaches even beyond the point when the de-
cisive moment has passed.11

Emily Abel’s work on end-​of-​life care in nineteenth-​century America gives

further context, detail and definition to this type of narrative.12 Abel rejects
the notion that doctors actively sought dominion over the dying process in
these years, or that medicine eclipsed the role of families and religion at the
deathbed. For Abel, the ability of medicine to control acute infectious disease
was quickly offset by the rising tide of chronic conditions, within which the
route to death could be protracted and unpredictable, and with unpleasant
symptoms that were difficult to control. Patients were labelled ‘incurable’ (in
the earlier period) or ‘terminal’ (somewhat later) and, by and large, ‘devalued
and avoided’ by physicians and hospitals alike. Even though the American
Medical Association (AMA) had drawn up a code as early as 1847 urging doc-
tors not to abandon the incurably ill or those imminently dying, physicians
10

10 To Comfort Always

were largely absent from the deathbed in this period. While medicine in the
mid-​nineteenth century made huge advances in the control of pain—​using
morphine and the newly invented hypodermic syringe—​skills in relieving
pain at the end of life lagged far behind those relating to pain relief after sur-
gery. The AMA code also warned against making gloomy prognostications
and this tended to foster a sense of false optimism, or even denial in doctors
dealing with terminally ill patients. In this way, the stance of American medi-
cine towards the dying could appear limited and detached. In 1873, America
had only 120 hospitals, from which the dying were, in the main, actively ex-
cluded. Most people died at home, cared for by relatives who continued to
view dying as a social and spiritual event that was largely the responsibility of
the family. Nevertheless, death could also take place in the hospital, among
strangers, and sometimes far from one’s roots and origins.
So in the ‘long’ nineteenth century, the prevalent culture of dying in Europe
and North America moved from an idealized and protracted process oriented
around spiritual considerations, to one where the primary concerns shifted
more to the relief of physical suffering than to matters of religious observance.
While the comfortable circumstances of the middle and upper classes may
have favoured easy access to a new cadre of physicians willing to intervene at
the deathbed, for poorer families the material realities of suffering continued
to be managed by relatives and neighbours, with limited practical resources
to alleviate pain and distress. Against this contextual background, it is now
time to move our focus to some of the key medical innovators of the period, to
examine how medicine began to develop a discourse of care for the terminally
ill in the nineteenth century, and in so doing, defined a set of parameters for
intervention and conduct at the bedsides of the dying.

Emerging medical perspectives on care

of the dying
Julie Rugg has observed that by the late eighteenth century, the doctor was
becoming a common presence for both upper and middle-​class families
around the time of death13 and this was a trend that continued as the nine-
teenth century advanced. As Lorna Jane Campbell notes, by the first half
of the nineteenth century, attention was turning in earnest to the specific
question of how best to care for the dying.14 At first, doctors had little to offer,
either in the way of curative intervention, or systematic modes of symptom
relief. Their role may have been limited to a combination of self-​styled impe-
riousness and well-​honed bedside manner, coupled with the judicious use of
laudanum and opium that had become commonplace in ‘the anaesthetised
11

Emerging medical perspectives on care of the dying 11

age’ of the eighteenth century.15 As the nineteenth century progressed, how-

ever, medical men gained access to new technologies, and to the drugs that
began to define the physician’s place at the deathbed. In time they became
active in collating and disseminating their practice in this regard, achieving
a growing audience for their endeavours. It is possible to identify a small
number of medical authors, frequently at the end of their professional career
(although not always), who made a particular contribution to the question of
caring for those imminently dying. It is hard to assess whether their practices
were representative of the prevailing norms. Their approach was essentially
a distillation of practical wisdom gained from experience and from the writ-
ings of their antecedents, and we must assume that they were at the forefront
(rather than the rear-​g uard) of thinking for their time—​w ith many others
having less complete or informed practices. We should therefore beware of
forming from these texts a more general representation of medical care for
dying people in this period.
As early as 1802, Richard Reece, following medical practice in Chepstow
and Cardiff, produced his expansive eight-​volume work for a wide reader-
ship entitled The Medical Guide, for the Use of Clergy, Heads of Families, and
Seminaries and Junior Practitioners in Medicine; Comprising a Complete
Dispensatory, and a Practical Treatise on the Distinguishing Symptoms, Causes,
Prevention, Cure, and Palliation,16 a work that was still in print in its 17th edi-
tion in 1850, almost 30 years after his death. This is one of the earliest uses
in medical writing of the term ‘palliation’, referring to the relief of symptoms
and suffering. It is notable that Reece not only thought to include nonmedical
persons in the readership of his book, but also gave prominence to care when
cure was not possible. Yet, works of this kind were usually general texts that
covered the entire spectrum of medical practice and were not in any sense
specialist writing on the care of the dying. Those were much fewer in number.
Ninety years after Reece, in a lecture on the care of the dying first given to
nurses at the Metropolitan Hospital in March 1892 that was then published
two years later, Dr Oswald Browne remarked in his introduction on the pau-
city of literature available concerning his subject.17 To the following half a
dozen works, he acknowledged his great debt:
◆ Dr John Ferriar, Medical Histories and Reflections (1798)
◆ Sir Henry Halford, Essays and Orations (1842)
◆ Sir Benjamin Brodie, Essays (1865)
◆ Sir William Savory, Lectures on Life and Death (1863)
◆ Sir Dyce Duckworth, in the third volume of Misericordia (1885)
12

12 To Comfort Always

◆ Dr William Munk, Euthanasia—​or Medical Treatment in Aid of an Easy

Death (1887)

Such a bibliography, covering almost a century of medical writing, may

seem slender indeed, although as we shall see in what follows it was not en-
tirely complete, and at least a small number of other doctors in the period
found time to lecture and to write about their knowledge and experience of
caring for the dying. (The list is also notable in excluding the contribution
of Florence Nightingale.18) Nevertheless, it provides at best only partial evi-
dence to support the idea that from the eighteenth century onwards, medi-
cal practitioners were actively seeking to colonize the process of dying.
Rather, we find in the collection the distilled wisdom of prominent medical
men, moved at some point to comment on the care that should be afforded
to the dying in their final hours and days—​w ithout any obvious sense that
care at the deathbed was presenting some new opportunity for medicine or
a new challenge to be overcome. Where this sense of opportunity is articu-
lated, it is found buried in academic theses that had little wider influence
for many years.
One such example, which we shall discuss in the next section, was the thesis
of Hugh Noble, who was writing about the care of the dying in Edinburgh in
the 1850s. There was also the thesis entitled De Euthanasia Medica19 of Dr
Carl Friedrich Heinrich Marx (1796–​1887) (Figure 1.1), presented in Latin
in 1826 at the University of Goettingen, which at that time was part of the
Kingdom of Hanover. His work had some influence on German physicians,
but did not reach a wider audience until 1952 when it was translated into
English and published by Dr Walter Cane of Nassau County, New York.20
Marx writes elegantly and comprehensively about the desired disposition of
medicine to those who are dying and begins by asking what can be done to
make the passing from life ‘gentle and bearable’. He defines this as a science
that controls the oppressing features of illness, relieves pain, and renders the
supreme and inescapable hour a most peaceful one. He suggests that up until
that time, the subject had not been thoroughly studied, and he is modest in
the claims he makes for his own contribution. Nevertheless, he is also criti-
cal of those physicians who, when they find their treatments wanting, begin
to lose interest in their patient, believing they are dealing with a disease, and
not a human being. The nobler path, he asserts, is taken by some physicians,
whom Marx observes in this wonderfully rousing passage:

With no shining ray of hope remaining, consider it their more lofty duty to lay to
peaceful rest a life they can no longer save. Accordingly they will extend their energy
and their affection, they will follow each successive turn of events, they will apply
13

Emerging medical perspectives on care of the dying 13

palliatives wherever they can, and with an all-​caring heart they will put themselves
in readiness for the great event, so that the last breath of passing may be light and
not dreadful to those left behind.

He then lays out three principles to guide such an orientation. First, there
is foresight: the watchful attendance of nurses and others, whom with skill
take every opportunity to ensure the patient’s comfort and the correct or-
ganization of the sickroom. Second, is the avoidance of suffering: this means
eschewing dubious therapeutic and surgical measures, and focusing on elimi-
nating or curbing pain, torment, and restlessness though sedative and anal-
gesic medications. Third, is the pursuit of higher comfort: this should not be
left only to the priest, but should capitalize on the known face of the physi-
cian, who endeavours to relieve agitation, bring confidence to the despairing,
assure the doubtful, and assuage fear.
In all this, Marx is clear that ‘euthanasia’ is not about the physician bring-
ing forward the moment of death, a practice he condemns: ‘ … least of all
should he be permitted, prompted either by other people’s requests or by his
own sense of mercy, to end the patient’s pitiful condition by purposely and
deliberately hastening death’. In this context, Marx can still praise the use of
narcotics, which ‘if properly and cautiously administered, are the most salu-
brious medicines for the whole human race and particularly appropriate for
euthanasia’. At the same time, practitioners must use them with care and be
alert to untoward side effects, aware of how they can differ in every individ-
ual, and sensitive to their power to produce stupor at high doses. He singles
out opium as the ‘solace of phthisics’ or the ‘blessed anchor’ for cholera.
According to Cane, Marx’s thesis was later praised by Dr Heinrich Rohlfs
(as a ‘medical classic’ in his work Geschicte der deutschen Medizin, published
in 1880). Marx’s short treatise contains many key elements in the nineteenth-​
century medical pursuit of euthanasia. That term would later in the century
change its meaning significantly and, in so doing, serve to obscure the goals
of care that Marx and others sought to identify for medicine when all thera-
peutic endeavour had become ineffective. As we shall see in subsequent chap-
ters, his blueprint for euthanasia bears remarkable resemblance to later en-
deavours that came to be known as palliative care. It was not about actively
seeking to end the life of the patient.
A paper by Mark Taubert and colleagues21 investigated the occurrence of
the word palliative within articles appearing in the Provincial Medical and
Surgical Journal (later the British Medical Journal) in the first three years
from its inception in 1840 (a dozen years before William Noble was submit-
ting his thesis at Edinburgh). They found a smattering of references, some pe-
jorative (‘mere palliatives’), others implying a more purposive orientation to
14

14 To Comfort Always

palliative treatments. Some concerned cases of cancer and some tuberculosis.

None seemed to have been concerned with patients actively dying, but they do
indicate that nineteenth-​century doctors were distinguishing between clini-
cal interventions that might have a curative intent, and those where the pur-
pose might be to give comfort, alleviate suffering, and lift morale.
The final work on Browne’s list for his 1892 lecture, Munk’s Euthanasia: Or,
Medical Treatment in Aid of an Easy Death, was already gaining significant
attention among medical and nursing readers. For in Munk’s 1887 work 22 we
see something much more extensive, more rigorous, and more like a manual
for end-​of-​life medical care that might be taken up and championed by others,
and thereby have some wider influence on medical practice.
William Munk was born in 1816 and qualified in medicine in 1837, having
attended medical schools in London and Holland.23 He established a success-
ful general practice in London, where he worked for over 60 years and became
well known in the profession. He was not only a leading authority on smallpox,
but also in his role as Harveian Librarian to the Royal College of Physicians,
he single-​handedly produced the Roll of the Royal College of Physicians of
London 1518–​1700.24 Though a prolific medical biographer, he yielded a
smaller output of clinical writings. In the present context, it is his Euthanasia
book,22 published when he was 71 years old and had spent more than 40 years
in medical practice, for which he is most notable. This was a work that had an
immediate impact in medicine and in nursing—​on both sides of the Atlantic.
For this reason, it is important to look at Munk in some detail.
Munk’s reason for writing Euthanasia is not clear. It is against the tide of
his other major publications, which were almost exclusively biographical.25,26
As we shall see in Chapter 2, there was a cluster of people in the years im-
mediately preceding the publication of Euthanasia whose religiously inspired
commitment to caring for the dying resulted in the establishment of special
homes for that purpose in London and elsewhere.27 Yet Munk gives no indica-
tion that he is aware of, or engaged with, any of these people or their activities.
The title of his work immediately gains the attention of the modern reader.
But, as we have seen, at the time of Munk’s writing, euthanasia still referred
chiefly to the notion of a calm and peaceful death, the good death brought
about with the assistance of the physician. It was not until the beginning of
the twentieth century that the modern sense of euthanasia, understood as
a deliberate medical intervention to end life, was fully articulated. Such it
was described by Robert Saunby in his 1902 work on medical ethics as ‘the
doctrine that it is permissible for a medical practitioner to give a patient suf-
fering from a mortal disease a poisonous dose of opium or other narcotic
drug in order to terminate his sufferings’.28 Munk, by contrast, uses the word
15

Emerging medical perspectives on care of the dying 15

euthanasia in its classical sense, to describe the goal of the physician in help-
ing the sufferer to a more comfortable death. He is clear that care should be
taken to avoid even the accidental premature death of the dying patient by the
incautious administration of opium.22 This sense of euthanasia had become
widely understood in Victorian Britain and was also used to refer to the glori-
ous deaths encountered through global exploration or other feats of heroism,
and which did not involve the medical practitioner.
Munk’s opening chapter covers four main aspects of dying. The first is to
assert that the moment of death is not as dreadful or painful in reality as is
often supposed. This was one of the contemporary arguments against delib-
erate killing. Here as elsewhere, we see Munk drawing on the influence and
arguments of earlier medical writers on his subject—​specifically Sir Henry
Halford, who had gained a significant reputation for his solicitous care of
dying members of the upper classes in the late eighteenth and early nineteenth
centuries,15 but also the more recent influences of Sir Benjamin Brodie and Sir
William Savory. He acknowledges that the process of dying may be painful,
but maintains the distinction between the moment of death and the ‘urgent
symptoms of disease that precede and lead up to it’. There are some exceptions
to this, where death is caused by disease of the heart and great vessels, as well
as in cases of ileus, hydrophobia, tetanus, and cholera, in which ‘some few do
really suffer grievously in dying and expire in great bodily torture’.
The mental aspects of dying, the second phenomenon noted by Munk, echo
the physical dimensions. That is, the moment of death is usually accompanied
by calm, particularly if the physician, or the patient’s friends, have helped
to maintain an attitude of hope. The great shock of discovering that death
is imminent usually gives way to a state of tranquillity, providing there has
been sufficient time for the patient to adjust. Where the realization of death’s
imminence comes too close to the event itself, Munk notes, recovery from the
shock is less likely, and this ‘explains some at least of the harrowing scenes
that occasionally mark the deathbed’. It is for this reason, he argues, that the
dying person should be fully informed about their condition: ‘An earlier in-
timation to the dying person of the great change he is about to undergo is in
all respects desirable.’
The third phenomenon Munk considers is the state of the intellect at the
actual moment of death. This may vary from alert to delirious, but regardless of
what state has been dominant during the process of dying, the transition to the
moment of death is marked by a ‘return of intelligence, that “lightening up before
death” which has impressed and surprised mankind from the earliest ages’.
The content of Munk’s first chapter is derived from his considerable experi-
ence as a practising physician, and his assertions are supported by reference
16

16 To Comfort Always

to previous authors, with whom he appears to always agree. A much shorter

chapter follows, ‘The Symptoms and Modes of Dying’, in which Munk presents
the variety and individuality of ways of dying, according to the nature and the
site of the disease. A footnote informs the reader that he has not relied so much
on his own experience in this part of the book, because ‘Sir Thomas Watson,
in his admirable lecture on the Different Modes of Dying,29 has treated the
whole subject so graphically that I shall follow him as closely as possible in
what I have to adduce on this part of my subject’. Munk was a great admirer of
Sir Thomas Watson30 and saw him as the most important doctor in the land.
Munk’s third chapter, ‘The General and Medical Treatment of the Dying’, opens
with the proposition that much suffering is not ‘naturally or necessarily incident
to the act of dying’, but is due to surrounding circumstances that can be changed
or managed. These include the provision of appropriate bedding, physical posi-
tion in the bed, fresh air in the room, and so on. In these observations and recom-
mendations, Munk reveals the influence of Florence Nightingale’s approach to
nursing. Nightingale’s Notes on Nursing (1859)18 is cited three times: (1) regarding
the desirable posture for a dying patient in bed; (2) the benefits of light bedclothes;
and (3) the necessity to avoid whispered conversations in the sick room. The most
important of the nursing considerations, according to Munk’s account, is the pro-
vision of appropriate nourishment. He devotes seven pages to this, claiming that
there is nothing of more importance in the management of the dying. The best
kind of food depends on the nature of the disease and the likely prognosis. Where
death results from ‘slowly progressive exhaustion’, as with cancer and some cases
of consumption, then food should be more nourishing and given in relatively
greater quantity. Sceptical of the value of beef tea and other meat extracts, favour-
ing instead milk, cream, beaten eggs, and cereal, Munk also asserts that wine
and spirits are of special use in the treatment of the dying. Alcohol passes readily
into the blood, stimulating the heart and lungs, and promoting the circulation. It
increases gastric secretion, stimulates peristalsis, and aids digestion. Ideally, al-
cohol and food should be given together, as they mutually influence one another.
Champagne is the best choice, but it needs to be given more frequently than other
wines or spirits. In all cases, the wishes of the patient are the most reliable guide
to what should be given. Munk’s approach to the use of opium is discussed in the
next section of this chapter, entitled ‘The question of pain relief’.
Munk’s book closes with prescriptions for the regulation of the dying cham-
ber, specific recommendations for managing death from disease associated
with the heart, lungs, and brain, and symptomatic management of hiccup,
restlessness, respiratory struggle, and various other phenomena. The final
paragraph describes death from old age, which Munk claims is ‘so gentle …
that nature herself provides a perfect euthanasia’.
17

Emerging medical perspectives on care of the dying 17

The majority of physicians in England and the United States in the 1870s
and 1880s were opposed to the deliberate killing of a dying patient, which
they saw as morally wrong, dangerous to individuals, and to society.31
Munk, for his part, gives no indication that he is aware of any wider debate
on the matter and does not engage with arguments for, or against this prac-
tice. His insistence on using the traditional and literal meaning of the word
euthanasia, at a time when other meanings were beginning to be attached to
it, may have been intended as a quiet, but forceful, statement of his position.
As Nick Kemp suggests, perhaps overstating the case, ‘one of the principal
reasons why nineteenth-​century physicians were not engaged in discussion
about the physician-​assisted suicide variety of ‘euthanasia’ was because they
were directing their attention to issues of palliative care which would secure
‘euthanasia’ in the classical sense’.32 (See the final section of this chapter,
‘End of the century’, for a discussion on the tendency of both practitioners
and historians to make use of twentieth-​century concepts—​in particular
the concept of palliative care—​when seeking to explain nineteenth-​century
practices.)
In 1888, the year after its publication, The Lancet printed a glowing review
of Euthanasia, calling it a ‘treatise by a thoughtful and experienced physi-
cian’ and supporting fully both Munk’s aim in bringing the subject to the
notice of the medical profession and his execution of important instruc-
tion in the medical management of the dying. ‘We have not a fault to find
with this treatise’, the review concludes. ‘It fulfils its purpose and we com-
mend it to our readers’.33 According to Jalland, Euthanasia ‘remained the
authoritative text on medical care of the dying for the next thirty years’.6
Munk’s work certainly influenced the writer of an article that appeared in
an American journal three years later, entitled ‘Some notes on how to nurse
the dying’. It borrowed heavily from Munk and sought only to praise his
contribution.

When I first took charge of wards there was nothing I so much dreaded as attending
death-​beds and nursing the dying … I in vain enquired for any book to help me and,
with the exception of a few sentences in various medical works, found nothing; until
a short time ago I read a most interesting and suggestive book called ‘Euthanasia’ by
Dr. Munk … and I thought that perhaps a few hints and some account of this book
might be interesting to some of my fellow nurses … Where all is so excellent it is
most difficult to make selections. I can only recommend the perusal of Dr Munk’s
book to those nurses who find the efficient nursing of the dying one of their most
anxious and difficult duties …34

An earlier transatlantic review had appeared in 1888 by the celebrated Canadian

physician William Osler. He is more muted in his praise for the book, simply
18

18 To Comfort Always

approving its ‘general and scientific interest’ along with its ‘many valuable sug-
gestions to practitioners and sound advice as to the medical management of
the dying’.35 Osler’s main purpose in writing seems to be to show how Munk’s
opinions accord with his own, particularly on the subject of death not being
the torment it is commonly supposed to be.
Munk’s text was authoritative, according to Jalland, because it drew widely
on the practice and teaching of the previous generation of doctors and showed
an essential continuity with their experience.6 Yet, if Euthanasia was influ-
ential within a narrow circle of reviewers and practitioners, its influence did
not last significantly beyond Munk’s own generation. In 1914 a medical cor-
respondent to The Times cites, on the subject of ‘the pains of death’, earlier
works by Savory and Brodie in support of his arguments, rather than Munk.36
By 1926, the American physician Arthur Macdonald was still calling for a sci-
entific study of death that would enhance the sum of knowledge and enable ‘a
general picture of the dying time, based upon a sufficient number of observa-
tions and with instruments of precision where possible’ so that fear of death
would be diminished and pain eliminated.37 Moreover, as late as 1935, the
American physician Alfred Worcester38 argued that the previous half-​century
had seen a deterioration in medical practice, rather than progress, in the art
of caring for the dying, with no mention of Munk.
Munk brought together the best elements of past medical practice and sum-
marized them for his contemporaries and immediate successors. At the same
time, he focused on the most modern technologies and the best of caring
practices that could be used to relieve suffering. Yet Munk’s influence seems
to have been narrowly circumscribed and later generations of doctors had to
discover for themselves how best to care for the dying effectively, and with hu-
manity. The early twentieth-​century search for ‘root cause and ultimate cure’,
in Patrick Wall’s words, inhibited a therapeutic approach to the symptoms of
dying. This was until the mid-​century palliative care pioneers in the emerging
hospice movement began to draw attention again to the need to give com-
fort in the absence of cure, recognizing that ‘the immediate origins of misery
and suffering need immediate attention while the search for long-​term cure
proceeds’.39
If Munk was the first to attempt a comprehensive documentation and
codification of the issues in the medical care of the dying, Sir William
Osler reported the first clinical study of the manner in which patients die
in his 1906 lecture Science and Immortality—​‘Observations of 500 dying
patients’.40 Following postgraduate training in Europe, Osler returned to
McGill University’s faculty as a professor in 1874. He was appointed chair
of clinical medicine at the University of Pennsylvania in Philadelphia in
19

Emerging medical perspectives on care of the dying 19

1884. When he left Philadelphia in 1889, it was to take up the position as

first physician-​in-​chief of the new Johns Hopkins Hospital in Baltimore,
Maryland. Shortly afterwards, in 1893, Osler was instrumental in the cre-
ation of the Johns Hopkins University School of Medicine, and he became
one of the school’s first professors in medicine. In 1905, he was appointed to
the Regius Chair of Medicine at Oxford, a position he held until his death
in 1919. He pioneered the practice of bedside teaching, making rounds
with a handful of students, demonstrating what one student referred to
as his method of the incomparably thorough physical examination. Osler
fundamentally changed medical teaching in North America, and his influ-
ence spread to medical schools across the globe.41
Shigeaki Hinohara42 has explained in some detail Osler’s concern for the
dying and the bereaved, and how Osler displayed a level of personal interest
and concern for his dying patients and their family members from his earliest
years in the profession. In general, Osler considered death from disease as un-
natural and likely to be accompanied by pain and suffering, but he regarded
death from old age as almost always the easiest of deaths, accompanied as
much by pleasure as pain. Across a lifetime of writing and lecturing, Osler
declaimed often on issues of dying and death. In a piece delivered in 1897,
he condemned nurses for intruding at the bedside of the dying, offending
the wishes of patients who may desire to be alone and usurping the role of
family members.43 More controversially, in his valedictory address at Johns
Hopkins Hospital, he endorsed Anthony Trollope’s account in the novel The
Fixed Period whereby men at the age of 60, after a year of contemplation, are
dispatched peacefully with a dose of chloroform.44 In general, Osler is known
for his view that death is less discomforting and painful than generally as-
sumed, and he demonstrated this in his analysis of the deaths of 486 patients
at Johns Hopkins Hospital during the period of 1900–​1904. A nurse inter-
viewed the patient in his or her last moments of life and items were recorded
by a chief nurse on a questionnaire, which was then countersigned by the
patient’s doctor. Osler reported the following:
I have careful records of about five hundred death-​beds, studied particularly with
reference to the modes of death and the sensations of dying. The latter alone con-
cerns us here. Ninety suffered bodily pain or distress of one form or another, eleven
showed mental apprehension, two positive terror, one expressed spiritual exaltation,
one bitter remorse. The majority gave no sign one way or the other; like their birth,
was a sleep and a forgetting.45

Osler was also greatly interested in his own mortality and when his health
deteriorated significantly in 1919, exacerbated by the losses of his two sons,
the second in Flanders, he engaged actively with his own process of dying. He
20

20 To Comfort Always

spent his last days in active goodbyes, in visits from loved ones, and main-
tained his intellectual endeavours to the last.46
Essentially, Osler took the view that the dying patient’s comfort was para-
mount and that aggressive and useless medical interventions should not be al-
lowed to interfere in the last days of life, when a sense of closure was essential.
Yet, he could not fully endorse Munk’s view that the deliberate ending of life,
even in the interests of relieving suffering, should always be avoided. As we
shall see in the conclusion to this chapter, he straddled a period and a debate
that was critical in redefining the meaning of euthanasia.

The question of pain relief

Rosaleyne Rey, in her comprehensive history of pain, sets out an expansive
view of the achievements of the nineteenth century in both the understand-
ing of pain and in its management and relief.47
In the 19th century, there were an increased number of break-​throughs in the
understanding of pain mechanism as well as a flowering of clinical disciplines and
therapeutic innovations. These were such that the century was truly one of great
discoveries in which the terrae incognitae were revealed in a decisive way allowing
men to better understand and sometimes better relieve pain.

It was, of course, across these decades that the so-​called ‘death of pain’ began
to be envisaged. The successful public demonstration of surgical anaesthesia
with ether in 1846 in Massachusetts General Hospital in Boston led to a revo-
lution in how pain could be both treated and conceptualized. It also brought
a growing sense of hubris about what scientific medicine could achieve. It now
became accepted as morally valid to obliterate pain in surgery, and then in
childbirth, and so pain came to be seen more as a disease in itself—​a phenom-
enon with little redemptive value. Yet, as Martha Stoddard Holmes48 suggests
in her essay on Victorian doctors and pain relief, the triumph over one kind
of pain may have created for doctors a sense of conflict, or even shame in re-
lation to pain that could not be relieved, so much so that:
… after 1846, the landscape in which doctors imagined and treated pain was a ter-
rain where the pain of the dying was increasingly out of place, at odds with medicine
imagined as a field of technological cures and miracles … Unlike a discrete surgical
event, moreover, the pain of chronic or terminal illness had to be addressed over
and over again.

Campbell takes the view that, beginning in the mid-​nineteenth century, medi-
cine was establishing how to integrate the use of the new pain-​relieving drugs
into the repertoire of practice, but was at the same time seeking to uphold
notions of the ‘good death’. This was a particular challenge in a context where
there was religious and theological opposition to the use of these drugs, which
21

The question of pain relief 21

were seen as unnatural and un-​godly. However, as the century advanced and
these methods became more widespread and visible to families and the public,
they set in motion calls for the further extension of their use. This was not only
to relieve suffering in the context of a ‘natural death’, but also to deliberately
end a life so that suffering might be overcome, however ‘unnatural’ the death
that resulted.14 This transition involved considerable theological upheaval. As
Lucy Bending has described, in the 1840s, debates about the understanding of
pain were closely linked to beliefs about eternal damnation, but by the 1860s,
the principle point of distinction was between those who found theological
meaning and divine purpose in suffering, and those who did not.49
During the nineteenth century in Britain and North America, opium and
opiates were freely and legally available across society for enjoyment or for
domestic use in treating minor ailments.50 Barbara Hodgson51 presents a fas-
cinating illustrated history of the use of morphine and laudanum in daily
life, showing how they were present in mixtures sold to the public for coughs,
colds, diarrhoea, infant teething, and a multitude of other problems. Medical
practitioners could also be liberal in their use of such formulations in pursuit
of euthanasia, understood in that classical sense of a calm and easy death.
However, a science of pain relief was also emerging. As Rey explains, this was
the period in which ‘chemistry applied to medicine’ was taking off. 47
After the initial work of the French chemist Charles Louis Desrosne,
Friedrich Sertürner, a native of Hanover, achieved the isolation of the sopor-
ific principle in opium in 1806 in Paderborn, Germany. He originally named
the substance ‘morphium’, after the Greek god of dreams Morpheus and for
its tendency to cause sleep. The drug was first marketed to the general public
by Sertürner and Company in 1817 as an analgesic, and also as a treatment for
opium and alcohol addiction. Commercial production began in Darmstadt,
Germany, in 1827 by the pharmacy that became the pharmaceutical company
Merck, with morphine sales being a large part of its early growth. After the in-
vention of the hypodermic needle in 1857 by the English physician Alexander
Wood, morphine use became more widespread and this mode of administra-
tion was widely believed to be less addictive to the patient.
From the mid-​nineteenth century onwards, those of the middle and upper
classes dying of cancer and tuberculosis were likely to receive copious quanti-
ties of opiates to relieve pain and suffering at the end of life. Others, if they
could afford to buy them over the counter, would have had access to lauda-
num or tinctures of opium. This picture of the fairly abundant medical and
public use of morphine began to change as the twentieth century approached.
Moral concerns about such drugs and their various mixtures began to surface,
and greater regulation of the use of opiates followed (such the 1914 Harrison
22

22 To Comfort Always

Narcotic Act in the United States).52 A long-​running era of drug restriction was
ushered in, during which a lack of access to opiates and pain relief became a
problem for medicine and healthcare. At the same time, medical attention to
those dying of cancer was diluted by a shift in emphasis to the emergent pos-
sibilities of curing and containing the disease, offered by new developments in
surgery, immunology, and endocrinology.53 Therefore, the relief of pain at the
end of life was intermittent and erratic in its progression across the decades
of the nineteenth and early twentieth centuries, making a simple narrative of
‘improvement’ both inaccurate and over-​optimistic. As Campbell also points
out, it is important not to overstate the wider progress in pain relief that came
about in the nineteenth century: ‘It would be an over-​simplification to read
this period as a heroic moment in history, in which the adoption of certain
types of techniques was related solely to a triumph over pain.’14
As scholarly research advances, more evidence is generated concerning
nineteenth-​century doctors who were inspired by the importance of pain relief
at the end of life. These accounts ranged from eminent physicians and surgeons
with royal patronage and senior hospital doctors not afraid to express their
views in strong terms, to country practitioners, and even those still undergoing
medical education. A hidden treasure of these writings has been analysed by
Campbell, who devotes an extended discussion to the thesis of the Edinburgh
medical student Hugh Noble, a work submitted for the degree of MD in 1854,
before the author apparently slipped into medical obscurity. Its title was simply
Euthanasia.54 With the refreshing openness of youth, and unintimidated by
the status of earlier medical authorities on care of the dying such as Sir Henry
Halford55 and Christoph Wilhelm Hufeland,56, 57 Noble not only provides a
wide commentary on the medical care of the dying patient, but addresses him-
self to the specific issue of pain relief at the end of life. Like Munk, Noble uses
the term euthanasia to denote a peaceful and idealized death. But as Campbell
shows, he also nudges his thinking towards a consideration of what the new
approaches to pain relief might mean for medicine, if challenged to use them
for the purpose of bringing about deliberate and final relief of suffering. Noble
considers the question of when to treat the dying patient, how much to take his
or her wishes into consideration, and how much information to proffer or with-
hold. Halfway through the thesis, he raises this fundamental question:

In regard to the active measures which may be adopted with the incurable or mori-
bund, it may be asked how far the practitioner may be justified in interfering with
the purposes of modifying or changing the mode of death.14

His response was that the sanctity of life placed such an action beyond the
limits of medical practice and therefore rendered it something that must
23

The question of pain relief 23

be condemned. He went on to observe that when the hope of recovery had

passed, the physician often turned away from the patient, forgetting that
‘more may be done—​that the time has come for restudying the case from
a different point with a new object in view’.14 If the physician was forbidden
from actively ending the life of a patient, this did not mean that he must ag-
gressively seek to prolong it.
Stoddard Holmes, also considering this new objective, quotes the English
surgeon and physician William Dale, writing in The Lancet in 1871, who em-
phasizes the twin principles of telling the patient of his or her fate, and then
using active means to relieve their pain.
Opium is … our chief medicine for relieving pain and procuring sleep—​our right
hand in practice … suffering humanity owes much to its virtues, and the physician
could ill spare it in his battle with disease and pain … On the near approach of
death, where much pain is endured, after having, as in duty bound, made the patient
sensible of his condition, I see no reason why he may not be kept constantly under
the influence of opium …58

Writing in 1874, John Kent Spender, a surgeon and physician based in Bath
and also described by Holmes, saw pain relief by the doctor as ‘the grandest
badge of his art’. He writes that one of the ‘chief blessings of Opium is to help
us in granting the boon of a comparatively painless death … we may, without
extinguishing consciousness, take away the sharp edge of suffering, and make
the departure from this world less full of terror’.59
William Munk had been clear to state that an important aspect of managing
the process of dying is the correct use of opium for the relief of physical pain
and for the ‘feeling of exhaustion and sinking, the indescribable distress and
anxiety’ that can accompany dying. Although placed second in importance
to the administration of stimulants, Munk gives even more space to precise
and detailed recommendations about how to use opium to best effect. Opium
in this context, writes Munk,22 is ‘worth all the materia medica’, but ‘its object
and action must be clearly understood’. It is given both to relieve pain and to
‘allay that sinking and anguish about the stomach and heart, which is so fre-
quent in the dying, and is often worse to bear than pain, however severe’. It
should be given freely and judiciously, not timidly and inadequately, or it will
not achieve its purpose.
A similarly bold approach was taken by Herbert Snow, who worked at the
London Cancer Hospital (later the Royal Marsden) as a surgeon from 1877
to his retirement in 1906. Like a handful of his contemporaries, Snow was
interested in the administration of strong opiates for the relief of pain and
‘exhaustion’ in advanced cancer. An advocate of early surgical intervention
for malignant disease, he also believed that cancer, in many instances, had
24

24 To Comfort Always

a neurotic origin and he sought to treat it by inducing an ‘opium habit’ in

his patients. By the 1890s, he was arguing that the conjunction of both mor-
phine and cocaine could not only relieve the symptoms of advanced cancer,
but could indeed slow the progression of the underlying disease. His 1896
paper, published in the British Medical Journal and entitled ‘Opium and co-
caine in the treatment of cancerous disease’ argued that the two drugs had
the power of ‘inhibiting tissue metabolism’ as well as ‘sustaining the bodily
powers under excessive and protracted strain’.60 He presented a number of
case histories in support of his argument, stating that morphine was effective
in relieving pain, while cocaine had value in ‘sustaining vitality’. Less than a
year later, however, in a letter to the same journal, Snow complained that ‘for
reasons of hospital finance I have been reluctantly compelled to abandon this
costly medicine [cocaine] for the majority of my hospital patients’.61
Snow may have been confused about some of the effects of his prescribing
methods, but his importance from a modern perspective was in highlight-
ing the role of opiates for symptom management in advanced cancer. It ap-
pears that his ideas about combining morphine and cocaine crossed the road
(Cale Street) from the Cancer Hospital to the Brompton Hospital. There, the
therapeutic goal of his successors was significantly different. For Snow, the
chief virtue of the combination was its apparent effect on the progression of
cancerous disease, and he seems to have reserved the use of the opium pipe
as the chief method for ‘palliation’ and symptom relief in advanced cancer.
When the combination was first reported at the Brompton in the early twen-
tieth century, its use was recommended for the relief of physical suffering
and pain associated with tuberculosis. As we shall see in later chapters, the
Brompton Cocktail, as it came to be known, had a special place in the history
of twentieth-​century hospice and palliative care. Its origins go back to Snow,
and he in turn was part of a wider community of nineteenth-​century doctors
who were eager to capitalize on the pain-​relieving properties of the opiates,
especially to relieve pain in those imminently dying. As we are starting to see,
the purposes of such drugs were beginning to vary in the minds of physicians.
And so it was that debates about access to pain relief and the principles of
its administration would echo long through the decades as new possibilities
emerged and, in time, a wider philosophy of modern hospice and palliative
care took hold.

End of the century

In August 1899, only a few months away from the end of the nineteenth cen-
tury, an article appeared in the Fortnightly Review by Joseph Jacobs,62 an
25

End of the century 25

Australian living in Britain at that time and well known for his extensive
work in the field of folklore.63 He set out a provocative account of the nature
of death in contemporary society, arguing that it had lost its terror, that the
church had become more oriented to the present life rather than the life to
come, and that the fear of death was being replaced by the joy of existence.
He attributed this to public health improvements, increasing longevity, and
to the fact that when death comes with more warnings, ‘We are more willing
to go, less eager to stay’.63 This tendency, he argued, could be exacerbated by
medical science, which protracts life at the cost of extra suffering, making
death not only a relief to the sufferer, but also to those who remain. Jacobs
asserted that ‘on all sides death is losing its terrors. We are dying more fre-
quently when our life’s work is done, and it seems more natural to die’.
Such a position runs into problems at the level of medical practice. A start-
ing point for the present work will be the contention that since the late nine-
teenth century there has been a diminishing importance given to the matter
of life or existence after death. Instead, the focus for professional and social
interest has become the process of dying itself. How we die now matters more
than the consequences of our dying. It was this notion that the nineteenth-​
century doctors recognized. Those among them who showed an interest in the
care of the dying set out to create an approach that could be taught to others
and which might merit the interest of fellow professionals through lectures,
journal articles, and medical textbooks. Even so, the goals of medicine at the
end of life were often problematic to lay observers and commentators. In 1911,
the year in which he won the Nobel Prize for literature, Maurice Maeterlinck,
the Belgian playwright and essayist, also writing in the Fortnightly Review,
claimed that ‘all doctors consider it their first duty to protract as long as pos-
sible even the most excruciating convulsions of the most hopeless agony’.64
This he attributed to medicine’s compulsion to prolong life at all costs. Yet, he
also conceded, ‘they are slowly consenting, when there is no hope left, if not
to deaden, at least to lull the last agonies’, although he continued to criticize
those who ‘like misers, measure out drop by drop the clemency and peace
which they grudge and which they ought to lavish’. Maeterlinck’s ideas on
the subject were further elaborated in a short book published the same year,
simply entitled Death.65 We know that William Osler took a close interest in
these writings, as he had with the work of Munk. In a letter to the Spectator
in 1911, Osler objected to Maeterlinck’s hysterical scaremongering about the
pains of death and the prolonged suffering associated with the deathbed. He
reiterated the findings of his empirical study of the dying, while rejecting
Maeterlinck’s call for doctors to intervene to end life when suffering is in-
tractable, and death is imminent.35
26

26 To Comfort Always

Stoddard Holmes and Helm both question the Foucauldian66 notion that
in the period described here the patient’s narrative of suffering disappeared
from medical discourse, in favour of the cataloguing and inscribing of signs
and symptoms. Each sees plenty of evidence that nineteenth-​century doctors
sought ways to find meaning in pain, along with their patients and families,
and they also strived to relieve suffering, even when death became inevitable.
A similar view is found implicitly in the work of Jalland. What emerges from
a review of the historiography and of some of the medical writings is that
whether provincially based in family practice or working in the metropolitan
hospital, there were nineteenth-​century physicians and surgeons who gave
their extended time and attention to the needs of dying patients and their
families. These practitioners grappled with important questions: whether pa-
tients should know of their imminent demise; how to accompany them on the
journey to death; how to relieve pain and suffering; and ways to give comfort
to distressed and grieving relatives. The developing interest in these areas,
however, seems to have found only a limited audience; pockets of enthusi-
asm here and there among like-​minded practitioners, but not a critical mass
capable of fostering transformational change. Instead, the gaze of medicine
looked away—​to the benefits that science and new knowledge might make in
the control of disease, to the potential for new specialisms, and to the growing
influence of the medical schools.
Also important, as notions of the evangelical ‘good death’ waned and there
was increased attention given to dying in the absence of pain and suffering,
was the emergence of the first publications to use euthanasia in a new sense—​
as medicalized killing or physician-​assisted death. Kemp traces the origins
of the modern euthanasia debate to the early 1870s and sees it essentially as
a philosophical discussion, in which the profession of medicine played no
part. It was sparked by the publication of a paper given to the Birmingham
Philosophical Society by a schoolteacher named Samuel Williams that gave
strong support to the idea of voluntary euthanasia.67 It appears that despite
the appearance of numerous articles and editorials in the medical press after
1873, medical practitioners did not take a prominent part in these discus-
sions. Kemp argues that while such discussions did take place in the United
States68 from a fairly early stage, in Britain ‘the concept of mercy-​k illing
failed, quite manifestly, to make any impact with the medical profession until
shortly before the turn of the twentieth century’.32
A common theme among writers on the care of the dying and the use of
pain relief in the nineteenth century is how the rich discourse of care and
practice developing at that time became forgotten by the early twentieth-​
century medical professionals. It was not until the groundbreaking work
27

End of the century 27

of later pioneers of hospice and palliative care got underway in the mid-​
twentieth century that these antecedents were recovered. There may well
be some truth in this. Certainly, it is a view held among professionals in
the field as well as historians. It is a position taken by the pain specialist
Patrick Wall69 in an editorial in 1986 and echoed by Cicely Saunders in her
foreword to the first edition of the Oxford Textbook of Palliative Medicine,
which appeared in 1993.70 Perhaps this is an understandable viewpoint
among clinicians eager to uncover a deeper heritage to their current goals
and ambitions. It is a more surprising tendency among historians, such as
Jalland and Strange, who appear keen to interpret nineteenth-​century cul-
tures and patterns of dying and care through a late-​t wentieth-​century ‘pal-
liative care’ lens. Strange, for example, speaks of ‘models of palliative care in
the late Victorian and Edwardian period’5 while, disarmingly, Jalland states
that ‘the nineteenth century medical authorities were remarkably close to
modern experts in their view on the use of opiates for the dying’, a very
curious remark, given it was not until the 1950s that clinicians began to un-
derstand that morphine could work orally.6 There were undoubtedly atten-
tive doctors and nurses in the nineteenth century who were solicitous about
the needs of dying patients and their families. This is not in dispute. But to
describe their practice as palliative care is misleading for, as we shall see,
this was essentially a concept of the later twentieth century, when the term
became widely adopted and came to take on specific meanings and defini-
tions. That said, some of the phrases of Marx, Noble, and Munk would not
look out of place in the early writings of Cicely Saunders, though we have no
evidence that she read any of them.
Campbell makes it clear that the questions the Edinburgh medical student
Hugh Noble raised in his MD thesis in 1854 remained key to the practice
of medicine for the terminally ill for more than a century afterwards. If his
work appears groundbreaking in some respects, its influence was negligible.
It was not published for a wider readership and Noble himself was not heard
of again. Stoddard Holmes takes the view that the other Victorian doctors
writing about pain were also rather peripheral to mainstream medicine, even
suggesting that their ideas and influence diminished as time went on.48 It
is tempting, therefore, to view William Munk, whose work of 1887 was so
widely and positively received, as the grandfather of modern palliative medi-
cine. Exactly 100 years after the publication of his classic work on care of
the dying, the specialty of palliative medicine was recognized in the United
Kingdom. Munk was surely among the first of his profession to lay out so
extensively the art and science of end-​of-​life care—​in a form and manner that
would influence others, and which was extensively praised at the time.
28

28 To Comfort Always

As David Cannadine notes, the ‘denial of death’, so often attributed to the

period after 1945, was probably underway even before 1914. In addition to
citing Jacobs’s 1899 article,63 he points out that the English of this period
were less acquainted with death than any generation since the Industrial
Revolution, that the death rate had fallen markedly, that ostentatious mourn-
ing had been in decline for 30 years, and that dying was increasingly associ-
ated with old age. In the same period, death on the battlefield—​at the time
thought unlikely—​was seen as glorious, noble, and romantic.71 The Great
War would change everything. Death and destruction on an industrial scale
eclipsed the suffering of the domestic and hospital deathbed. However, it also
promoted a cult of the dead that prevailed in the interwar years when Britain
and other European countries went into a prolonged phase of public mourn-
ing and bereavement. The societal focus at this time was on collective loss and
establishing memorials. This may well have served to sequestrate dying itself,
which did indeed become a societal taboo and a matter about which it was
difficult to speak. The interpretation goes a long way in explaining medicine’s
loss of traction in the same interwar period with regard to improvements in
care for the dying. But as we shall see in Chapter 2, there were a few small
institutions, founded in the late nineteenth century and focused explicitly on
the care of the terminally ill, which continued into the next millennium, and
in so doing kept alight a flame of interest in medical care when death was im-
minent. It is to these homes and hospices that we will now turn our attention.

Notes
1. Holubetz M (1986). Death-​bed scenes in Victorian fiction. English Studies, 67(1):14–​34.
2. Ariès P (1976). Western Attitudes Towards Death: From the Middle Ages to the
Present. Baltimore and London: Johns Hopkins University Press.
3. Ariès P (1981). The Hour of Our Death. London, UK: Allen Lane.
4. Walter T (1993). Sociologists never die: British sociology and death. In: Clark D (ed.).
The Sociology of Death, p. 286. Oxford, UK: Blackwell.
5. Strange J-​M (2005). Death, Grief, and Poverty in Britain, 1870–​1914, p. 20.
Cambridge, UK: Cambridge University Press.
6. Jalland P (1996). Death in the Victorian Family. Oxford, UK: Oxford
University Press.
7. Strange J‐M (2000). Death and dying: Old themes and new directions. Journal of
Contemporary History, 35(3):496.
8. Strange J-​M (2002). ‘She cried a very little’: Death, grief, and mourning in working
class culture. Social History, 27(2):143–​61. See also note 5.
9. Bell F (1985 [1907]). At the Works: A Study of a Manufacturing Town. London,
UK: Virago, as quoted in note 5.
10. Helm DP (2012). A sense of mercies: End of life care in the Victorian home.
Unpublished master’s thesis, Philosophy. University of Worcester, UK.
29

End of the century 29

11. Nolte K (2009). Dying at home: Nursing of the critically and terminally ill in private
care in Germany around 1900. Nursing Inquiry, 16(2):144–​54.
12. Abel EK (2013). The Inevitable Hour: A History of Caring for Patients in America.
Baltimore, MD: The Johns Hopkins University Press.
13. Rugg J (1999). From reason to regulation: 1760–​1850. In: Jupp PC, Gittings C (eds.).
Death in England: An Illustrated History, p. 203. Manchester, UK: Manchester
University Press.
14. Campbell LJ (2003). Principle and practice: An analysis of nineteenth and twentieth
century euthanasia debates (1854–​1969). Unpublished PhD thesis. University of
Edinburgh, UK.
15. Porter R (1989). Death and the doctors in Georgian England. In: Houlbrooke R (ed).
Death, Ritual, and Bereavement, p. 91. New York, NY: Routledge, in association with
the Social History Society of the United Kingdom.
16. Reece R (1802). The Medical Guide, for the Use of Clergy, Heads of Families,
and Seminaries and Junior Practitioners in Medicine; Comprising a Complete
Dispensatory, and a Practical Treatise on the Distinguishing Symptoms, Causes,
Prevention, Cure, and Palliation. London, UK: Longman.
17. Browne O (1894). On The Care of the Dying. London, UK: George Allen.
18. Nightingale F (1859). Notes on Nursing: What Is It, and What It Is Not. London,
UK: Harrison.
19. Marx CFH (1826). De Euthanasia Medica. Dietrich, Germany: Goettingen.
20. Cane W (1952). Medical euthanasia. A paper published in Latin in 1826, translated,
and then reintroduced to the medical profession. Journal of the History of Medicine
and Allied Sciences, 7(4):401–​16.
21. Taubert M, Fielding H, Mathews E, Frazer R (2013). An exploration of the word
‘palliative’ in the 19th century: Searching the BMJ archives for clues. BMJ Supportive
and Palliative Care, 3:26–​30.
22. Munk W (1887). Euthanasia: Or, Medical Treatment in Aid of an Easy Death.
London, UK: Longmans, Green and Co.
23. Hughes N, Clark D (2004). ‘A thoughtful and experienced physician’: William Munk
and the care of the dying in late Victorian England. Journal of Palliative Medicine,
7(5):703–​10.
24. Davenport G, McDonald I, Moss-​Gibbons C (2001). The Royal College of Physicians
and Its Collections: An Illustrated History. London: Royal College of Physicians.
25. Munk W (1861). The Roll of the Royal College of Physicians of London 1518–​1700.
London, UK: Royal College of Physicians.
26. Munk W (1895). The Life of Sir Henry Halford. London, UK: Royal College of
Physicians.
27. Humphreys C (2001). ‘Waiting for the last summons’: The establishment of the first
hospices in England 1878–​1914. Mortality, 6(2):146–​66.
28. Saundby R (1902). Medical Ethics: A Guide to Professional Conduct, p. 12. Bristol,
UK: John Wright and Co.
29. Watson T (1855). Lectures on the Principles and Practice of Physic. Delivered at King’s
College, London. Philadelphia, PA: Blanchard and Lea.
30. Royal College of Physicians. Lives of the Fellows: Sir Thomas Watson. Available
at http://​munksroll.rcplondon.ac.uk/​Biography/​Details/​4657, accessed 5
November 2013.
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30 To Comfort Always

31. Emanuel EJ (1994). The history of euthanasia debates in the United States and
Britain. Annals of Internal Medicine, 121(10):793–​802.
32. Kemp NDA (2002). Merciful Release: The History of the British Euthanasia
Movement. Manchester, UK: Manchester University Press.
33. Reviews and notices of books (1888). Lancet, 131, no. 3358 (7 January):21–​2.
34. Sumner A (1890). Some notes on how to nurse the dying. The Trained Nurse,
IV–​V:17–​21.
35. Cushing H (1940). The Life of Sir William Osler. Oxford, UK: Oxford
University Press.
36. The Times (25 February 1914):10.
37. Macdonald A (1926). The study of death in man. Letter. Lancet (18 September):624.
38. Worcester A (1935). The Care of the Aged, the Dying, and the Dead. Springfield,
IL: Charles C. Thomas.
39. Wall P (1986). Editorial. Pain, 25(5):1–​4.
40. Osler W (1906). Science and Immortality. London, UK: Constable.
41. This paragraph draws heavily on The Osler Symposia. Available at http://​w ww.osler-
symposia.org/​about-​Sir-​William-​Osler.html, accessed 22 July 2015.
42. Hinohara S (1993). Sir William Osler’s philosophy on death. Annals of Internal
Medicine, 118(8):638–​42.
43. Osler W (1905). Nurse and patient. In: Aequanimitas with Other Addresses to
Medical Students, Nurses, and Practitioners of Medicine, 3rd ed., pp. 147–​60.
Philadelphia, PA: Blakiston.
44. Osler W (1905). Valedictory address at Johns Hopkins University. Journal of the
American Medical Association, 44:706.
45. Osler W (1904). Science and Immortality, p. 18. New York, NY: Ravenside Press.
46. Jones S (1994). Sir William Osler’s views on euthanasia. Osler Library Newsletter,
77:1–​3.
47. Rey R (1995). The History of Pain. Cambridge, MA: Harvard University Press.
48. Stoddard Holmes M (2003). The grandest badge of his art: Three Victorian doc-
tors, pain relief, and the art of medicine. In: Meldrum ML (ed.). Opioids and Pain
Relief: A Historical Perspective. Progress in Pain Research and Management, vol. 25.
Seattle, WA: IASP Press.
49. Bending L (2000). The Representation of Bodily Pain in Late Nineteenth Century
English Culture. Oxford, UK: Oxford University Press.
50. Seymour J, Clark D (2005). The modern history of morphine use in cancer pain.
European Journal of Palliative Care, 12(4):152–​5.
51. Hodgson B (2001). In the Arms of Morpheus. The Tragic History of Laudanum,
Morphine, and Patent Medicines. New York, NY: Firefly Books.
52. Achilladelis B, Antonakis N (2001). The dynamics of technological innovation: The
case of the pharmaceutical industry. Research Policy, 30:535–​88.
53. Pinell P (2002). Cancer. In: Cooter R, Pickstone J (eds.). Medicine in the 20th
Century. Newark, NJ: Harwood Academic Publishers.
54. Noble H (1854). Euthanasia. Unpublished MD thesis. University of Edinburgh, UK.
55. Halford H (1842). Essays and Orations Delivered at the Royal College of Physicians.
London, UK.
56. Hufeland CW (1842). Three Cardinal Means of the Art of Healing. New York,
NY: W Radde.
31

End of the century 31

57. Hufeland CW (1846). On the Relations of the Physician to the Sick. Oxford, UK: JH
Parker.
58. Dale W (1871). On pain and some of the remedies for its relief. Lancet (13 May):
641–​2; (20 May):679–​8 0; (3 June):739–​41; (17 June):816–​817, quoted in 48.
59. Spender JK (1874). Therapeutic Means for the Relief of Pain. London, UK: Macmillan,
quoted in note 48.
60. Snow H (1896). Opium and cocaine in the treatment of cancerous disease. British
Medical Journal (September):718–​19.
61. Snow HL (1897). The opium-​cocaine treatment of malignant disease. British Medical
Journal (April):1019.
62. Jacobs J (1899). The dying of death. Fortnightly Review, 72:264–​9.
63. Fine GA (1987). Joseph Jacobs: A sociological folklorist. Folklore, 98(2):183–​93.
64. Maeterlinck M (1911). Our idea of death. Fortnightly Review, 90:644.
65. Maeterlinck M (1911). Death. Translated by Alexander Teixeira de Mattos. London,
UK: Methuen.
66. Foucault M (1973). The Birth of the Clinic: An Archaeology of Medical Perception.
New York, NY: Vintage.
67. Essays by Members of the Birmingham Speculative Club (1870). London,
UK: Williams and Norgate.
68. Dowbiggin I (2003). A Merciful End. The Euthanasia Movement in Modern America.
Oxford, UK: Oxford University Press.
69. Wall P (1986). Editorial. Pain, 25(5):1–​4.
70. Saunders C (1993). Foreword. In: Doyle D, Hanks GWC, Macdonald N (eds.). Oxford
Textbook of Palliative Medicine. Oxford, UK: Oxford University Press.
71. Cannadine D (1981). War and death, grief and mourning in modern Britain.
In: Whaley J (ed.). Mirrors of Mortality. Studies in the Social History of Death.
London, UK: Europa Publications.
32
33

Chapter 2

Homes for the terminally ill:

1885–​1948

Figure 2.1 Frances Davidson (1840–​1920)

Born in Scotland, Davidson established the first home in London to
concentrate exclusively on the care of the dying. Known at first as
The Friedenheim, it opened in 1885 and initially cared for people with
tuberculosis, and later those with cancer. Later called St Columba’s,
it was one of a small wave of homes around the world that drew
attention in the late nineteenth and early twentieth centuries to the
importance of carefully organized institutional care for the dying.
Reproduced by kind permission of David Clark.
34

34 To Comfort Always

Institutions taking precedence

The late nineteenth century saw many Western countries advance their am-
bitions to promote and secure public health, even in the face of continued
epidemics of smallpox, cholera, and tuberculosis. There were innovations in
disease prevention and health protection, and confidence was growing in the
power of medical science to overcome the health problems that for centuries
had seemed intractable. Populations and cities were growing in scale. Wealth
was increasing, albeit along with attendant divisions and inequalities between
the urban social classes, and these new fissures in society were replicated in the
provision of and access to medicine and care. Institutions of one sort or another
were widely seen as the overarching solution to the social problems of the day.

Hospitals, medical progress, and implications

for the dying
In this context, there was a great upsurge in the building of hospitals, the new cit-
adels of care and the sites of medical professionalization and academic respect-
ability. Hospitals were reorganizing, becoming more specialized, and some were
focusing on specific conditions. Many were reaping the benefits of new sources
of private philanthropy and patronage. Confident, grand, and invested with the
expanding prosperity of the age, the hospitals were edifices to medical progress
and the treatment of disease. They were not, however, much concerned with the
care of those nearing the end of life. Indeed, they were often actively resistant
to dying patients, who were frequently turned away to seek comfort and solace
elsewhere—​in their own homes if they were fortunate, in the workhouse if they
were not.1 Even the tuberculosis sanatoria and cancer hospitals, purveyors of re-
habilitation and cure, tried to exclude patients with little chance of recovery.2
Towards the end of the nineteenth century, however, small flickers of inter-
est in the fate of dying patients became visible. As we have seen in Chapter 1,
this was refelected in the growing awareness of some doctors and nurses, as
well as a measure of public discussion. Despite the reluctance of the acute
hospitals to admit dying patients, it was becoming more common for life to
end in some form of institution, rather than in the home. In the United States
after the Civil War, people increasingly died in hospitals3 and, by the end of
the nineteenth century, moribund patients were systematically transferred to
special rooms for their last days and hours.4 For the first time in history, spe-
cial institutions were being established, often the work of religious orders or
religiously motivated philanthropists, that were uniquely concerned with the
care of dying people. Initially the influence of these ‘hospices’ and ‘homes for
the dying’ appears to have been limited. They emerged in several countries
35

Religious foundations and the new homes for the dying 35

throughout the later nineteenth and early twentieth centuries, but appar-
ently made little impact on the wider environment of care for the dying. In
the United States and Europe, they overlapped in mission and activity with
homes for ‘incurables’—​t hose suffering from chronic conditions, for which
the emerging science of modern medicine also had, as yet, little to offer.
Regardless of their limitations in scale, these places signified an important
transition in which the dying were being repositioned behind the ‘opaque veneer’
of institutional care.5 What was later called the sequestration of the dying was
now getting underway. The needs of the dying were being recognized, but as per-
sons to be hidden away from public space and, in particular, to be excluded from
the day-​to-​day organization of the rapidly expanding public hospitals. Here were
the first signs of how a new medical establishment was seeing death as failure.
However, as Isobel Broome points out, while the major hospitals’ indifference to
the dying is well documented, until recently there has been little research into
one of its consequences—​the creation of a small number of charitable hospitals
formed at this time to care for the dying and moribund. These hospitals, in con-
trast to other institutions, were actively seeking out such patients.6 Pat Jalland’s
account of Victorian death and medical practice with the dying has nothing to
say of them, despite the fact that she elucidates some key transitions in the or-
chestration of the good death in the period from 1885 to 1914. Nor did they merit
much in the way of contemporary recognition or support: a commentator in the
Contemporary Review of March 1891 wrote that ‘there is not to be found any
refuge, home or hospital but the workhouse for the man who is neither curable
nor incurable, but actually dying’.7 Therefore, it is welcome to note that in Britain
two doctoral studies, by Clare Humphreys and Isobel Broome, take an in-depth
insight into four of the homes for the dying that were established in London be-
tween 1885 and 1905. Coupled with the scholarship of Emily Abel in the United
States, these are a rich source of detail and insight, not only into the institutional
aspects and organization of these establishments, but also into some of the day-​
to-​day clinical issues and experiences of the patients and families for whom they
cared. These matters are the focus of this chapter. Table 2.1 is an indicative but
not comprehensive list of homes of this type from around the world.

Religious foundations and the new homes

for the dying
The role of women
A striking feature of this late nineteenth century ‘turn’ towards institutional
care for the dying is that the various examples across countries and continents
were often initiated by women—​always religiously and charitably inspired—​but
36

36 To Comfort Always

Table 2.1 A selection of nineteenth and early twentieth-​century

homes for the dying

L’Hospice des Dames du Calvaire:

Lyons 1843

Paris 1874
St Etienne 1875
Hospice Desbassyns De Richemont, Pondicherry 1876
Our Lady’s Hospice for the Dying, Dublin 1879
L’Hospice des Dames du Calvaire, Marseilles 1881
Friedenheim Home of Peace, London 1885
L’Hospice des Dames du Calvaire, Brussels 1886
Sacred Heart Hospice, Sydney 1890
L’Hospice des Dames du Calvaire, Rouen 1891
Hostel of God, London 1891
St Luke’s House, London 1893
St Rose’s Free Home for Incurable Cancer, New York 1896
The House of Calvary, New York 1899
St Joseph’s Hospice, Hackney, London 1905

as far as we can tell, not linked to, or aware of each other’s activities. At a time
when women were largely excluded from medicine, their actions were rooted in
a nineteenth-​century religious culture that emphasized service in the world and
was organized through nursing within religious orders, diaconal structures,
and charitable groups and associations. The focus of such endeavours was often
on saving lost souls from sin, caring for the ‘deserving poor’, and reaching into
deprived communities to offer a glimpse of life beyond poverty, drunkenness,
gambling, and other conditions inconsistent with a temperate and godly life.
The religious and charitable character of these first hospices and homes for
the dying was deeply consequential for many decades afterwards, shaping nar-
ratives of care at the end of life and pervading the culture and orientation of
professional practice. If the early homes had medical involvement, it was rarely
a central or driving force. These were not the places where the leading writers
on terminal care (as described in Chapter 1) were practising. Attending physi-
cians offered help and support with the management of distressing symptoms,
but the routine duties and daily care were the preoccupation of female nurses,
many of whom were in religious orders. Safe passage to eternity was what they
sought for their patients. The ideal of the good death continued to have strong
37

Religious foundations and the new homes for the dying 37

religious components in this context and medicine was, most of the time, in an
ancillary role to spiritual care.

Mary Aikenhead—​Irish Sisters of Charity

Mary Aikenhead, born in 1787, in Cork, Ireland, became Sister Mary
Augustine at age 25, and was established almost immediately as Superior of a
new order, known as the Irish Sisters of Charity, the first of its kind in Ireland
to be uncloistered. The order made plans to establish a hospital. Three of
the sisters went to Paris to learn the work of the Notre Dame de la Pitié
Hospital, and in 1834 in Ireland, they opened St Vincent’s Hospital, Dublin.
Following many years of chronic illness, Mary Aikenhead died at nearby
Harold’s Cross in 1858 having fulfilled her lifelong ambition. The convent
where Mary Aikenhead spent her final years became Our Lady’s Hospice for
the Dying in 1879. This, and other services provided by the order, ministered
to the needs of a highly impoverished population within Dublin, where mor-
tality was high, and access to care and support extremely limited. As T. M.
Healy writes: ‘The cramped and often squalid conditions where birth, life
and death all mingled, were a major reason for starting Our Lady’s Hospice.’8
Its doors first opened with 27 beds under the guidance of Anna Gaynor,
known as Mother Mary John, who quickly had to steer the establishment
through a vile winter in which the sewers blocked up and an outbreak of
smallpox struck the hospice itself. Over time the facilities were extended,
more beds were added, and the hospice continued to consolidate its activities
in the period up to 1914. The Sisters of Charity also developed other facilities
to care for the dying as far away as Australia (1890), as well as in England
(1905) and Scotland (1948). One of these, St Joseph’s Hospice, Hackney, estab-
lished at the beginning of the twentieth century in the impoverished East End
of London, went on to have a particularly important place in the narrative of
modern palliative care history, as we shall see later.

Jeanne Garnier—​Les Dames du Calvaire

A young widow and bereaved mother, Jeanne Garnier, together with other
women in similar circumstances, formed L’Association des Dames du Calvaire
in Lyon, France, in 1842. The association opened a home for the dying the
following year, which was characterized by ‘a respectful familiarity, an at-
titude of prayer and calm in the face of death’.9 Garnier died in 1853, but
her influence led to the foundation of several other establishments for the
care of the dying: in Paris and St Etienne (1874); Marseille (1881 and 1894);
Brussels (1886); Rouen (1891); Bordeaux (1909)—​La Maison Medicale, Notre
Dame du Lac; as well as in Rueil Malmaison (1939); and Maison Jean XXIII
at Freilingen (1966).10 Reflecting a sense of religious calling to her endeavours,
38

38 To Comfort Always

Garnier remarked in a memoir towards the end of her life, ‘J’ai fondée mon
refuge avec cinquante francs; la providence a faire la reste’—​I founded my
refuge with 50 francs; providence did the rest.11 Her name continued to be
associated with palliative care services in France into the twenty-​first century.

Frances Davidson— ​Friedenheim

Frances Davidson (Figure 2.1) founded the first home for the dying in Britain
in 1885. Born in 1840 in Aberdeenshire, Scotland, she grew up in a middle-​
class home in a family of faith with an ethic of service. Little is known about
her early adult life, but at some point after 1870 she was spending time in
London and engaged in visiting the sick as part of the work of the Mildmay
Mission. She is remarkably unacknowledged for her foundational work to
secure institutional care for the dying in London.
The Mildmay Mission Hospital had its origins in the work of the Revd
William Pennefeather and his team of Christian women, later known as
deaconesses, who began visiting the sick of the East End during the chol-
era outbreak of 1866. The first Medical Mission Hospital opened in 1877 and
moved to Hackney Road in 1892. The hospital was recognized for its training
of nurses in 1883.12 It appears that Frances Davidson, building on her associa-
tion with the Mission and inspired by the needs of those dying of tuberculosis
in particular, developed an idea de novo to create a ‘home of peace’ for the
dying and, for reasons that remain unclear, she adopted the German name
‘Friedenheim’ to describe it.6 Located at 133 Mildmay Road, Islington, near
the Mission headquarters in Mildmay Park, she devoted all her energies to its
cause, right up until her death in 1920 at the age of 80. Preference was given to
those whose circumstances had been reduced by mortal illness and to those
for whom the workhouse infirmary was a ‘dreaded last resort’.13 Admission
was free, although there were private rooms for those who could afford to pay.
The work continued under various names and in varying locations until the
later decades of the twentieth century.

Rose Hawthorne—​Servants of Relief of Incurable Cancer

In the United States, Rose Hawthorne (born in Lenox, Massachusetts,
1851) the daughter of Nathaniel Hawthorne, had experienced the death of a
child and watched her friend, the poet Emma Lazarus, die of cancer. In 1891,
both Rose and her husband, George Lathrop, converted to Catholicism. Five
years later, they separated, and she devoted the rest of her life to the care
of poor people with cancer.2 After a three-​month training course at the
New York Cancer Hospital in the summer of 1896, she established premises
at Scammel Street in the September of that year on New York’s Lower East
39

Religious foundations and the new homes for the dying 39

Side, where she opened what is said to be the first home in America for the
free care of ‘incurable and impoverished victims of cancer’.14 The work met
with ‘countless hardships and almost universal distrust’, but was part of
the efforts of an organized group of women known as the Servants of Relief
of Incurable Cancer, formed with Alice Huber, the daughter of a Kentucky
physician. Hawthorne used her literary connections and abilities to write
and publish letters appealing for funds. Support was strong and she was
able to move to better premises on Water Street in early 1897. Under the title
Mother Alphonsa, she formed an order known as the Dominican Sisters of
Hawthorne. Following the establishment of St Rose’s Home for Incurables
in Lower Manhattan, another home was founded at Rosary Hill, north of
New York City, followed by others in Philadelphia, Pennsylvania; Fall River,
Massachusetts; Atlanta, Georgia; St Paul, Minnesota; and Cleveland, Ohio.
St Rose’s Home, established in 1912 at Jackson Street in lower Manhattan,
finally closed in 2009, leaving the sisters with four homes: in New York,
Philadelphia, Atlanta, and in Kisumu, Kenya.15
Although unknown to each other, Mary Aikenhead, Jeanne Garnier,
Frances Davidson, and Rose Hawthorne shared a common purpose in their
concern for the care of the dying and, in particular, the dying poor. Directly
and indirectly, they founded institutions which, in time, led to the develop-
ment of other homes and hospices elsewhere, some of which still exist today
and bear their names. They established base camp for what was to follow, and
their achievements created some of the preconditions for modern hospice and
palliative care development. The work of these women is a key precursor of
hospice developments that took place in the next century and was a source of
inspiration to hospice protagonists more than 100 years subsequently.

Terminal care homes in London

Two small institutions in London are known to have taken in dying persons
of the ‘respectable’ poor from the mid-​nineteenth century.16 The Hospital of
St John and St Elizabeth opened in 1856 and would accept dying patients,
although for many years this was women and children only. It continued to
operate as a Catholic hospital in the twenty-​first century, with a modern hos-
pice in its grounds in St John’s Wood, London. St Peter’s Home in Kilburn
was founded in 1861 by Anglican sisters of the same order. Although we
know little of the workings of these early endeavours, within a subsequent
period of 30 years (1885–​1905), four homes were founded in London that had
the specific objective of providing a place of peace and comfort for the dying
poor (a fifth contender was the Home of the Compassion of Jesus, established
1903, about which very little is known). As Clare Humphreys puts it, they
40

40 To Comfort Always

were ‘an institutional response to a domestic problem’17 and relied heavily

in their appeal on an ability to extract the moribund and the dying from the
abject conditions in which they found themselves, in a London that was grow-
ing rapidly, and where social disadvantage sat cheek by jowl with wealth and
privilege.

The Friedenheim
The Friedenheim was started in 1885. In what Broome describes as its ‘experi-
mental period’, it was located in a small house at Mildmay Road, in Islington,
where there were eight beds for patients. Its financing and management were
solely the responsibility of Frances Davidson. A neighbouring building was
acquired around 1891, but this only provided space for two more beds. When
the leases on these accommodation expired the following year, the opportu-
nity arose to move to larger premises. This was very much the work of Alfred
T. Schofield, whose March 1891 article in the Contemporary Review7 was in
part a promotional device aimed at attracting funds to the Friedenheim.
When the move came, it was to a more grand setting in Hampstead. The el-
egant villa on three floors was in its own grounds and benefitted from good
air, in contrast to the smoke of Islington. In time, it would provide accom-
modation for up to 50 patients. The move also ushered in a new era of greater
professionalism and scale, as were required in the running of a small hospital,
rather than a modest ‘home’. Photographs taken in the first decade of oc-
cupancy reveal an environment of comfort and taste. There were large well-​
appointed rooms with open fires and views to the garden. The furniture was
of good quality and there were soft furnishings to bring comfort to patients
and families. Over time, steady improvements were made to the available
equipment and amenities. However, as World War I gathered momentum,
there was unease. The German-​sounding name of the hospital was attracting
suspicion and criticism. With agreement from its patron, Queen Mary, the
name was quickly changed to St Columba’s Hospital, reflecting the Scottish
origins of its foundress and avoiding the risk of xenophobic sentiment.
The Hampstead property was on a 50-​year lease and when, by the late 1930s,
efforts to extend, or to purchase met with no success, it was necessary again
to find an alternative home for the hospital. The outbreak of World War II
produced an extension to the lease, but when peace came, the hospital faced
the challenge of the brave new world of the National Health Service (NHS).
It was absorbed into the NHS under the auspices of the Paddington Group
Management Committee, but it was not until 1957 that it moved to its final
location, also in Hampstead, where it remained until closure in 1981.6 In this
later period, St Columba’s appears to have been ill-​fitted to the times and suf-
fered an extended period of decline and uncertainty before it was eventually
41

Religious foundations and the new homes for the dying 41

closed down. Nevertheless, Cicely Saunders made several visits there before
she embarked upon a career in medicine, as she recalls here.
When I was looking around as a social worker, I went to St Columba’s and met Miss
Howell, who was the matron. And I visited there two or three times. They had a fire
in the wards, an open grate, which was why we built with a fire in our day rooms.
Lord Amulree was one of their consultants, the geriatrician who was working at St
Pancras and who visited us with his team when I was working at St Joseph’s … I was
really very interested in St Columba’s … it was a nice place.18

Hostel of God
The Hostel of God was founded in Clapham as a result of an appeal in The
Times on Christmas Day in 1891. It was by Colonel William Hoare, a distin-
guished local banker, written on behalf of Clara Maria, Mother Superior of
the Anglican order St James’s Servants of the Poor, then residing in Cornwall.
The letter praised Alfred Schofield’s Contemporary Review article and high-
lighted the need in London to care for those close to death, at a time when
the only other institution of such a kind was the Friedenheim. Hoare donated
£1 000, and a further £1 000 was raised by public subscription, enabling the
home to open. Named after the Hotel-​Dieu in Paris, it had 15 beds, and was
run initially by the St James’ sisters from 1892 to 1896, when the sisters of St
Margaret’s of East Grinstead took over. In 1900 new premises were acquired
on Clapham Common, with facilities for 36 patients.17 By 1933, it had 55 beds
which, with the addition of St Michael’s ward in 1953, brought the total to
75. Along with St Joseph’s Hospice, but unlike its other nineteenth-​century
contemporaries, it made the transition to the modern era of palliative care.
In 1977, its management was transferred from the hands of the nuns to its
council, which had been in place since the early 1900s. Henceforth, it op-
erated as a secular independent organization, and in 1980, it adopted the
name Trinity Hospice. In the same year, it saw the appointment of its first
full-​time medical director and the establishment of a homecare team. The
hospice underwent significant refurbishment between 1978 and 1985, going
on to expand its services in education and, in 1987, it opened a day centre to
outpatients. In 2009, and now as the oldest operating hospice institution of
its kind in Britain, an entirely new and purpose-​built inpatient centre was
added, offering patients private, en-​suite rooms with balconies overlooking
the gardens, family areas, counselling and bereavement rooms, as well as new
medical facilities.
St Luke’s Home for the Dying Poor
In 1893, St Luke’s in Regents Park opened, founded by Dr Howard Barrett, the
medical superintendent of the Methodist West London Mission. Although not
42

42 To Comfort Always

run by a religious group, close contacts were maintained with the Mission and
several of its sisters visited the home on a regular basis. Like the Friedenheim,
it could claim comfortable amenities and facilities. With accommodation for
15 to 16 beds in four wards, as well as two isolation rooms, it also had cosy
corners, plants, and easy chairs. In 1901, it moved to two converted houses
in Hampstead. Despite major works on the site, it was relocated again when
problems arose with the lease (which did not allow any other use but that
of a domestic residence) and when neighbours complained that the home’s
presence prevented other properties in the street from being let. Closing in
Hampstead in January 1902, it reopened in Pembridge Square before moving
to nearby Hereford Road, Bayswater, in 1923. Barrett had retired in 1913, and
from 1917 onward, St Luke’s became a ‘hospital for advanced cases’. The early
religious influences began to wane and it became increasingly synonymous
with a modern public hospital. With the inauguration of the NHS in 1948,
its management was absorbed into St Mary’s Teaching Group of Hospitals.
Nevertheless, for a while at least it maintained its special character and its
careful approach to the regular administration of pain relief. These qualities
were what attracted Cicely Saunders to volunteer her services there in the
1950s, while working as a hospital almoner and on the point of embarking
upon medical training. In 1974, the building was renovated and the hospital
was renamed Hereford Lodge (thus avoiding the depressing connotations of
‘advanced cases and dying’). It had 42 beds for pre-​convalescence and termi-
nal care. Hereford Lodge eventually closed in 1985, and its functions were re-
allocated to St Charles Hospital and the Paddington Community Hospital.19

St Joseph’s Hospice
The Religious Sisters of Charity first came from Ireland to the East End of
London in 1900, seeking to deliver their charism of service to the poor and
dispossessed. Initially their focus was on the local Irish population, among
whom poverty was endemic. They had been invited there by Father Peter
Gallwey, an admirer of the work of Our Lady’s Hospice in Dublin. Soon
the home visits of the newly arrived sisters introduced them to those dying
of tuberculosis, and to the need for a place of care modelled on that which
had been successfully established at Harold’s Cross. In 1904, an anonymous
donor gifted them the Cambridge Lodge estate, consisting of a large property
and two acres of land at Mare Street, Hackney. It was from there that they
were able to establish the work of St Joseph’s Hospice, which opened its doors
on the night of 14 January 1905 to two patients—​one a tram driver dying
of consumption who was carried there by friends. By 1907, the hospice was
staffed by eight Catholic sisters who worked as nurses, four part-​time doctors,
43

Religious foundations and the new homes for the dying 43

and two part-​time chaplains, as well as domestic staff and untrained nurses.
Now 25 beds were in constant use. A corrugated iron chapel was added in
1911, and this marked the start of a continuous process of building and re-​
building that continued for a hundred years. In 1922, three new wards with
balconies were added; a flat roof allowed tubercular patients access to fresh
air without the exertion of going into the garden. Care was free to the poor
although contributions were welcome, and supporters could guarantee access
to the hospice for themselves or a nominee. From 1923 onwards, the Ministry
of Health recognized the hospice as a facility for those no longer eligible for
a tuberculosis (TB) sanatorium, and this brought in a new stream of income.
Further extensions and central heating facilities soon followed. The comple-
ment of beds rose to 75. Adjacent land was bought in 1927 for a nursing home.
In 1932, a new chapel joined the convent to the hospice and additional nurs-
ing accommodation was included. However, as the economic depression of
the period deepened, this was a time of great hardship, with a constant strain
to make ends meet.
When World War II came and bombs fell on Hackney, the hospice was
evacuated to the city of Bath, returning only when peace was established.
There was war damage to make good, with the involved repair costs beyond
all previous imaginings. Sister Mary Antonia, who moved to the hospice from
Ireland as a young nun in 1947, recalls the careful approach to money that
prevailed.
The Sister in charge when I went there didn’t want to be using money. I think she
thought that the hospice couldn’t afford it. She used to be a bit hesitant about asking
the authorities for any increase in money or anything like that. But still we got by all
right, because people were very generous with donations, even in those days. And
I remember there was just one car outside, and that was the doctor’s car, in my early
days, when I went in ‘47.20

However, when the new developments were completed, the outcome exceeded
all expectations. Our Lady’s Wing was opened in the mid-​1950s and provided
a light, modern, and airy environment for the delivery of terminal care to
patients. From its huge windows, the patients could look out onto the bustle
of Mare Street. There were six bedded bays with a single room on each floor,
as well as two day rooms. The new wing brought the complement of beds to
112. The whole idea had been the vision of Sister Mary Paula Gleeson, Matron
and Superior at St Joseph’s from 1954 to 1960, and then from 1976 to 1982. It
was to this new facility that Cicely Saunders made visits as a medical student,
and where she took on a full-​time research position after qualifying in 1957.
St Joseph’s was a hothouse for Saunders’s thinking, as she began to make
plans to establish her own hospice while she worked there continuously
44

44 To Comfort Always

until 1965. St Joseph’s continued to develop and in time to interact with St

Christopher’s Hospice, which opened in 1967, as well as with Our Lady’s in
Dublin. New facilities were added in Hackney in 1965. Gradually the original
nineteenth-​century buildings were all replaced. Homecare services were de-
veloped. By 1983, 25 nuns and a large group of lay doctors, nurses, ancillary
workers, and volunteers were caring for 120 patients in their own homes and
a further 112 in the hospice beds, which accommodated 600–​700 admissions
per year. Education programmes grew and purpose-​built accommodation
was provided to deliver them. By the new millennium, Our Lady’s Wing came
under the demolition hammer and was replaced with the Centenary Wing
with twenty-​first century facilities for the delivery of care to the terminally
ill and dying.21

‘Proto-​hospices’
Grace Goldin termed these homes the ‘proto-​hospices’.22 They paved the way
for much future thinking and practice. Two out of the four that were founded
survived through to the modern age of hospice and palliative care, and even
the two that did not endure were both formative influences on the work of
Cicely Saunders. Two were run directly by religious orders, while the other
two had strong religious affiliations. There was also a marked denominational
character to each of the homes (one Catholic, two Anglican, one Methodist),
and this had a profound impact on the way in which the deathbed was man-
aged. Above all, the religious, philanthropic, and moral concerns of the homes
were inextricably interlinked.17 Despite their denominational differences,
each reflected the concerns of the Victorian church to recapture the hearts
and souls of the poor and working classes, who were increasingly considered
lost to the ways of Christianity. Such a starting point inevitably pervaded the
mode of care delivered, and the ways in which it was described and presented
to external audiences.

Religious influences in the homes

In this context, the patients’ bodily suffering was regarded as important, but
the management of the deathbed was determined primarily by spiritual ob-
jectives and the overriding aim was that of saving patients’ souls. Most in-
stitutions placed a singular emphasis upon the importance of spiritual prep-
aration. As Howard Barrett, the medical officer at St Luke’s House, London,
commented in one of his detailed annual reports: ‘It is much if we can render
the last weeks and months less destitute of comfort, less tortured by pain.
It is far more if through any instrumentality of ours some become humble
followers of Christ.’17 Accepting that they could not offer any prospect of a
45

Religious foundations and the new homes for the dying 45

bodily cure, the homes held out an alternative hope, what the sisters at St
Joseph’s Hospice called ‘soul-​cures’, defined by them as the process of ‘hard-
ened sinners turning back to their Saviour in their last dying moments’. It was
common within the homes for the patient to be perceived as made up of three
separate, yet interrelated entities: body, mind, and soul. The soul was ultim-
ately afforded precedence because it alone was immortal. As Barrett noted: ‘At
the last hour all externals, all mere clothing, fall off—​t here is nothing but God
and the soul.’
Accordingly, attending to patients’ bodily and mental concerns was felt to be
a prerequisite for addressing the ultimate goal—​t heir spiritual needs. In this,
the homes formed part of a broader shift in thinking among late Victorian
churches, which increasingly recognized that the ability to carry out spiritual
ministration was dependent upon taking care of patients’ physical concerns
as well.23 The chaplain at St Luke’s described the relationship.
How hard, how well nigh impossible it is to speak the comfortable words of Christ
when the mind of both the sufferer and the minister are taken up with the untended
needs of the body … Our teaching is maimed and undone unless the authority of
the Gospel goes hand in hand with the infinite compassion and helpfulness of the
Saviour.24

Ultimately pain and suffering were accepted as part of God’s will. The
Reverend Howard May, one of the visiting ministers to St Luke’s, observed
the following, rather dramatically:
We must never look upon the pain and suffering in St Luke’s apart from God; for
however greatly we marvel at the sufferings which patients have to endure, the most
wonderful thing is that Christ … is with them in the furnace.25

At St Joseph’s, the sisters often referred to patients’ pain as their ‘cross’, while
the matron at St Luke’s wrote: ‘Pain, so hard sometimes to understand, has
made our patient’s realise as nothing else would, that they must make “their
robes white in the blood of the Lamb” and thus through pain peace has come
to them in the end.’26 Similarly the sisters at the Hostel of God saw suffering
as ‘a token of love, and the one means, often and often, of drawing souls to the
Fountain of Love’.17
At St Luke’s House and St Joseph’s Hospice, individual accounts of some
of the patients who died in the home were recorded in annual reports and
annals. Most of these accounts describe patients’ dying experiences in the
context of their wider spiritual history, investing the death with an added
meaning and significance, linked to eternal destiny.
46

46 To Comfort Always

‘Holy and happy deaths’

At St Joseph’s Hospice, as Humphreys shows, every aspect of death and dying
was deeply entrenched in the teachings of Catholicism. The sisters’ accounts
of patients were written purposively. Their principal objective was to recount
the spiritual history of patients, before and after admission to the hospice,
focusing in particular upon the place of their reconciliation or conversion to
the Catholic faith. Most of the accounts describe patients who were only rec-
onciled or converted after admission to the hospice. The importance of being
able to die in a Catholic atmosphere, surrounded by the multitude of symbols
and rituals of the Catholic church, was felt to be paramount in reconciling
or converting patients and in helping them to achieve a ‘happy death’. One
female patient was
very interested in the Holy pictures and statues about her in the ward. When she saw
the Sacred Heart on the Communion morning, she made enquiries as to what they
were receiving. She read the life of the Little Flower and was drawn specially to her
because she died of TB. She asked to be taken to the Chapel on Holy Thursday. She
was instructed and received into the Church and made her first Holy Communion
on the Feast of the Sacred Heart. That evening she passed peacefully away.17
Reproduced with permission from Humphreys C. ‘Waiting for the last
summons’: The establishment of the first hospices in England 1878–​1914.
Mortality, Volume 6, Issue 2, pp. 146–​166, Copyright © 2001 Taylor and Francis.

Ritual mediations were a particularly significant feature of the ‘holy’ death.

Reception of the sacraments, saying prayers and aspirations, reciting the
rosary, kissing a crucifix, attending Mass, and being anointed were regular
observances. The sacraments were particularly important in imparting a
‘soul-​saving’27 grace to recipients and helped to fortify them for death. ‘Holy
and happy deaths’ were considered edifying to others, especially non-​Catholic
relatives. Once the patient was actually dying, Holy Viaticum (the last com-
munion) and Extreme Unction (the last anointing) were administered, and
the ‘prayers for the dying’ could begin.28

The ‘respectable Christian death’

In the same way, descriptions of patients in the annual reports for St Luke’s
House reflect the influence of Methodism. The accounts by Howard Barrett
about St Luke’s House, ostensibly written as a way of generating public interest
in the home, were also a reflection of an underlying nonconformist ideology
and were attempts to prescribe what happened there. Varied in content and
incorporating a number of different elements; moral, spiritual, humorous,
social, and pathological, they show examples of patience, fortitude, courage,
47

Religious foundations and the new homes for the dying 47

and cheer in the face of deep physical suffering. A large number also refer to
the patient’s moral character and this had an influential bearing upon the way
in which death was viewed in the home.
Death at St Luke’s House had a specific moral condition attached to it. In
1897, Howard Barrett described suffering as ‘the one thing which brings all
men together on a level’.29 There was a clear discrepancy, however, between
the acceptance of this maxim at a theoretical level and its practical implica-
tions within the home. The annual reports emphasized that only the ‘respect-
able’ or ‘deserving’ poor were eligible for admission. Barrett wrote that ‘the
unworthy poor must be treated and provided for differently’—​in institutions
provided by the Poor Law.30 He had no qualms about dismissing a patient
whose moral character he felt to be unsuitable.
The patients’ spiritual condition was also believed to have a profound effect
upon their manner of death. The stories written by the Visiting Sisters at St Luke’s
dealt primarily with the spiritual aspects of patients’ lives. Most emphasized the
place of faith within the patients’ biography, and the way in which this influ-
enced their attitude towards both their physical condition, and the approach of
death. Many of the patients in these stories underwent conversion because of
being at St Luke’s. Faith in Jesus Christ as one’s personal Lord and Saviour was
felt to be more important than the denominational route through which it was
acquired. According to Barrett, ‘a dying man doesn’t want an “ism” he wants
Christ, broadly and simply presented’.17 Patients who found faith in Jesus were
described under the broader heading of ‘Christians’, rather than being identi-
fied with a specific denomination. Outward manifestations of faith were also
less important; what mattered was being ‘able to rejoice in the assurance of sins
forgiven’. One of the Visiting Sisters neatly captured the dual nature of the ‘re-
spectable Christian death’ in her account of a female patient at the home in 1907.
When it dawned on her she had a mortal illness and it was not just sufficient to
have led a respectable life she gave herself to prayer and turned the face of her soul
towards God.17
Reproduced with permission from Humphreys C. ‘Waiting for the last
summons’: The establishment of the first hospices in England 1878–​1914.
Mortality, Volume 6, Issue 2, pp. 146–​166, Copyright © 2001 Taylor and Francis.

Spiritual passivity and ecumenical leanings

Broome paints a somewhat different picture at the Friedenheim. Here there
was less concern about deathbed conversion and an absence of some of the
proselytizing fervour and missionary zeal found elsewhere. Moreover, no spe-
cific religious barriers were placed in front of patients wishing to gain entry to
the hospital. While there were multiple biblical texts to be found on the walls,
48

48 To Comfort Always

the messages contained in them were less likely to shape the interactions be-
tween staff and patients. As founder Frances Davidson wrote in 1910, ‘I leave
them now to do most of my talking … But the texts speak and I have the as-
surance and the evidence that God’s work does not return unto Him void’.6
Despite these endeavours in the goal of triumphal, happy, holy, and
Christian death, ‘bad deaths’ could undoubtedly occur. The reports and
annals of the homes all contain occasional examples where spiritual inter-
vention and solicitude failed. A patient at St Luke’s, dying from cancer, was
unable to swallow when he was admitted. The annual report described him
as ‘doubly unfortunate, for he seems quite inaccessible to religious influences,
there is no “Faith” in him at all, as far as can be gathered, to bring him a ray
of comfort or light in the darkness’.31 At St Joseph’s, patients who refused to
be reconciled or converted to the Catholic faith were looked upon with disap-
probation by the sisters. One Irish woman, a lapsed Catholic described by the
annalist as ‘not a very consoling case’, was admitted to the hospice on New
Year’s Eve.
[She] could not be induced to go to Confession on the appointed day. She got sud-
denly bad one morning and [the sisters] hastily sending for the priest made prepa-
rations for anointing and in a state of fearful anxiety fearing he would be too late
endeavoured to help her and dispose her soul for the reception of the Sacraments
without much apparent effect. She was quite conscious but paid little heed to what
the priest said and did. She couldn’t get Holy Communion and he could only pray to
the end that the Lord’s mercy would be felt in that poor soul.32

Clinical culture in the homes

If the institutional history and character of the terminal care homes has over
time become more clearly understood, we are less assured in our knowledge
of the particular role of medicine within them. Several points stand out. The
homes do not appear to have been the locus of medical practice for those
doctors who at the time were writing about ‘euthanasia’, and the medical
care of the dying. Conversely, those doctors who did work in the homes were
largely disinclined to write about their experiences for a wider medical audi-
ence. Nor do the homes appear to have established any strong academic links
with the emerging teaching hospitals, at least in the early days. With religious
thinking and practice clearly dominating day-​to-​day care in the homes, what
is there to know about the specifically medical aspects of what was taking
place there? Most of the historical records provide details of the organiza-
tion and staffing aspects of medical care. There is also significant detail re-
corded on admissions, types of patients, and their diseases and rates of death.
Nevertheless, we are poorly served by accounts of medical intervention, the
49

Religious foundations and the new homes for the dying 49

types of treatments used, and the detail of pain and symptom management.
This came much later, in the mid-​twentieth century, when as we shall see in
Chapter 3, further significant changes began to happen.
In the London homes, there was mainly a reliance on visiting physicians,
although the Hostel of God did employ a salaried medical officer and St
Luke’s had a designated medical superintendent. These senior physicians ex-
ercised authority over all admissions, something that was taken care of by the
Mother Rectrice at St Joseph’s. At St Luke’s, three criteria influenced admis-
sions. First, patients must be of the respectable poor; this meant those of the
working and middle classes, who had fallen in their fortunes and for whom
previous receipt of parish relief was a strong contraindication to admission.
Patients must also be from London, where the need was considered greatest;
so those from the surrounding countryside were discouraged. Finally, pa-
tients must be imminently dying; this was not an establishment for the infirm
and incurable who might continue for protracted periods, despite their debili-
tations.22 In a similar vein, services at the Friedenheim were only for those in
the last stages of illness, who had also been rejected by the general hospitals,
and found themselves of insufficient means and friendless.6
At the Friedenheim, many patients were referred from the London teaching
hospitals; a fact which Frances Davidson took as evidence of the high regard
in which the establishment was held.6 With this in mind, it is difficult to ex-
plain why the homes gained little in the way of wider recognition until the
1950s, since they appear from the outset to have fitted in with the London
medical scene and to have provided a useful and well-​regarded service. At St
Joseph’s, the patients were mainly identified by the nuns through their work
in the local area of Hackney. There was also some evidence that the ‘proto-​
hospices’ helped each other with cross referrals when bed space was limited.6
The vast majority of patients in the homes were suffering from phthisis
(later known as pulmonary tuberculosis). Tuberculosis was the leading cause
of death in Britain in the nineteenth century, and in Ireland mortality rates
continued to rise into the next century, while falling elsewhere. In Dublin,
between 1891 and 1900, 34.5 per cent of a population of 10 000 died from the
disease. Often protracted in its course, TB was accompanied by painful and
debilitating symptoms. At Our Lady’s Hospice, Dublin, between 1895 and
1910, the proportion of patients with TB was between 68 per cent and 74 per
cent. By contrast, cancer patients were in the minority and only started to in-
crease proportionally from the 1920s onwards.
There are also indications that even in the terminal care homes, those with
external cancers were less welcome. At Our Lady’s, this was attributed in the
early years of the twentieth century to a lack of facilities. However, there is
50

50 To Comfort Always

evidence that the sheer repugnance occasioned by some patients’ symptoms

made them unacceptable to the nursing staff. At St Luke’s, Barrett comments
on one man whose ‘malady gave rise to an odour so awful that none but the
doctors could bear it, and they did not enjoy it. He was, of course, isolated, but
the ward maids declined and nurses hesitated to enter his room, and if the
chaplain entered with some qualm, he came out with worse’.22
At the Friedenheim, the orientation at first was specifically to TB patients
and this continued over time, possibly because they were also easier to nurse
than cancer patients. The early medical reports at the Friedenheim also dis-
tinguish between admissions for simple, complex, and acute pulmonary
phthisis, as well as tuberculosis of the vertebrae, abdominal organs, glands,
sternum, and knee joints.6 It was not until after Frances Davidson’s death in
1920 that the council of the home provided arrangements to extend care to
those with cancer.
Broome provides a helpful summary of inpatient facilities in four of the
London homes at the beginning of the twentieth century. 6 In 1905, bed num-
bers were as follows:
◆ Friedenheim (42)
◆ St Luke’s House (35)
◆ Hostel of God (28)
◆ St Joseph’s Hospice (12)
The patients were not of particularly advanced age. Most of the homes made
it clear that they were not offering services for the elderly infirm, though from
time to time they each reported problems of ‘long stay’ patients—​seen by
Barrett as a ‘misappropriation of funds’.6 Dr Percy Lush, medical director at
the Friedenheim, 1892–​1918, described the problem thus in 1904:
Every care is taken to admit only dying patients—​that is, as we interpret it, such
as are not expected to live more than two or three months—​a nd thus relieve the
General Hospitals and allow them to admit more patients. This is not yet generally
understood; hence we receive a great many applications on behalf of the sadly large
class of chronic incurables, which we are obliged to decline. For it will be at once
recognised that every patient who occupies a bed for, say, twelve months is prevent-
ing the admission of three or four really dying ones.6

At the Friedenheim in 1899, 85 per cent of the patients were under age 50,
with 50 per cent between 21 and 40 years old.6 The Friedenheim also served
an extraordinary range of nationalities from some 20 different countries.
Approximately 75 per cent of all admissions across the homes ended in death.17
When St Joseph’s opened in 1905, four local doctors gave their services to its
patients: Dr Berdoe, Dr Cahill, Dr Ross, and Dr Parsons. By 1911, the annual
51

Religious foundations and the new homes for the dying 51

report was expressing ‘deep gratitude to the eminent honorary physicians

who devote their time and professional knowledge to alleviate the sufferings
of the poor patients’.21 Sir Alfred Pearce Gould, who died in 1922, was a vis-
iting doctor at St Luke’s. Dean of the Faculty of Medicine at the University of
London, 1912–​1916, he had a particular interest in cancer and participated in
trial treatments for these patients, and for those with tuberculosis.13
The annual reports of the Friedenheim also contain entries praising the
visiting doctors. Broome speculates that the distinguished physicians and
surgeons who are listed as honorary consultants, particularly after the estab-
lishment moved to improved premises in Hampstead, may well have been
more a sign of prestige for the home than evidence of their direct involvement
in clinical matters on a day-​to-​day basis.6 The employed medical officers, by
contrast, were seeing patients on a daily, or twice-​daily basis.
It is difficult to gain a measure of the type of medical care being delivered
in the homes; still more so to establish the extent to which it was influenced
by the writings of Munk and others. As Broome writes, ‘There is no direct
evidence of the extent to which the Friedenheim’s medical officers recognised
this evolution in medical theory of care for the dying’,6 and certainly there
were no references to these writers in the annual reports produced by the
homes. Notable among the medical officers at the Friedenheim were Percy
Lush, John Clark Wilson, and Norman Sprott, who served between 1892 and
1948. This assured medical coverage for over 60 years from just three men,
and they were committed not only to direct care of the patients, but also to
the management of the Friedenheim’s affairs through its executive council.
Lush’s obituary in 1919 praised his consideration and politeness to the pa-
tients and his devotion to the creation of a homely environment. His registrar
and locum, Clark Wilson, succeeded him—​Edinburgh-​trained and an elder
of the Church of Scotland. The two undoubtedly forged a strong influence on
medical care at the Friedenheim in its early decades, which was at the same
time suffused with religious sentiment and values. Their reports give insight
into their clinical work. We see evidence of tailoring medication to need: ‘For
many, indeed the great majority, a frequent change of medicine is called for
to relieve the distressing symptoms as they arise’, and there was a boldness in
prescribing, in one case up to eight grains of morphia per day to control pain.
Oxygen, although expensive, was widely used, and was the only thing that
gave relief to some patients. Alcohol was forbidden at the Friedenheim, but
patients were indulged towards the end of life. And clean dressings were lib-
erally used; as Lush noted, ‘it is no uncommon thing to use a pound of cotton
wool, inter alia, upon one patient in a day’.6
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52 To Comfort Always

Tuberculosis of the lung was described by Barrett as ‘the despair of the

Hospitals and of the District Nursing agencies’. By contrast, Barrett himself
adopted a positive attitude to these patients: ‘You may be veritably dying and
yet not always in bed.’22 There was a small garden, where patients could sit on
sunny days; day trips out and drives though the park; then followed by a spe-
cial tea. A group of visitors came regularly to give the patients comfort, sup-
port, and interest. Some patients confided their worries to the visitors—​on oc-
casions these were about their families at home, who had been left in extreme
poverty; while in St Luke’s, the patients themselves could feel guilty about
being treated with a measure of luxury inconsistent with their life outside.
In 1949, Dr Norman Sprott parted company with previous practice among
his colleagues in the terminal care homes and published an article about his
work.33 Although appearing at a time when other stirrings of interest in ter-
minal care were in evidence (which we will explore in Chapter 3), he gives
a good indication of regular practice at the Friedenheim, by this time St
Columba’s Hospital, and by extension, the practices at other homes for the
terminally ill in that era. His focus is clear.
At this stage, cure of the disease is out of the question and what is needed is medical,
nursing and spiritual care. From the patients’ point of view, kindness, encourage-
ment and bodily comfort are much more important than frequent medical examina-
tions, scientific investigations and useless attempts or pretences to cure. A friendly,
homely atmosphere, both of which prevail at St Columba’s, are all important.6

Sprott goes on to acknowledge that some measure of investigation into the

‘clinical material’ at St Columba’s might repay investment, but states that this
lies beyond the reach of the facility, and so his account is based on clinical and
empirical experience rather than a ‘strictly scientific’ approach. Nevertheless,
his experience was substantial—​caring for some 200 patients with advanced
cancer each year, compared to two to three for the average general practi-
tioner. Patients coming to St Columba’s often arrived with advanced disease
and metastases present in the lungs, abdominal viscera, skin, and skeleton.
The primary growth may have been removed by surgery, in Sprott’s view
making the case easier to manage, and occasioning less distress for the pa-
tient. He gives a comprehensive list of problems and complications that can
occur in these patients and makes it clear that ‘what is required is the relief of
symptoms’.33
Some of this relief was delivered through simple measures such as diet,
fluids, and comfort. Anxiety and insomnia might require the use of pheno-
barbitone and soluble hypnotics. Pain is the symptom demanding the greatest
attention. Here he makes the important statement: ‘Drugs should be freely
given, the amount and frequency depending on the patients’ symptoms and
53

Possibilities of wider influence 53

often on their wishes rather than on any preconceived idea of what should be
necessary.’33 Patients were often started on aspirin and codeine phosphate,
and then graduated to morphia by injection, using one-​and-​a-​half grammes
or more. When morphia caused vomiting, the more expensive diamorphine
was substituted. Very rarely had drug addiction been a problem and all doses
of ‘dangerous drugs’ were carefully checked and recorded. Sprott also noted
the potential (though he had little personal experience) of intrathecal injec-
tions, nerve blocks, and laminectomy.
Sprott devotes a whole section of his paper to ‘treatment of the mind’, which
he regarded as of equal importance to physical treatment. At the core of this
should be a relationship of trust between the doctor, patient, and nursing staff;
with no place for deceit and falsehood: ‘Most of the patients want to know the
truth, though frequently their friends are most unwilling that it should be re-
vealed to them.’33 He concluded his piece with an emphasis on social activities
and distractions, on the importance of a homely atmosphere, on limiting the
size of such hospitals to around 50 beds, and on situating them where com-
munication channels were good, rather than in the depths of the countryside.

Possibilities of wider influence

Sprott’s paper contained no references, but as we shall see in Chapter 3, it ap-
peared at a time when others were also beginning to come forward with med-
ical commentary on such matters. He gives us a rare insight into the medical
and nursing care that prevailed in the terminal care homes up to the mid-​
twentieth century. Broome argues that Sprott’s paper marks a significant shift
from earlier writings on terminal care, even from those of Alfred Worcester,
the American physician, whose work on the care of the aged, the dying, and the
dead had appeared in 1935.34 Whereas Worcester (who was 80 years old when
his book was published) writes in a style akin to nineteenth-​century physi-
cians, emphasizing oral hygiene, nutrition, the use of opiates, and ‘watchful
waiting’, by contrast Sprott discusses disease processes and the matching of
specific drug regimes to symptoms. There are hints here of a more medically
robust stance on the part of Sprott, and one that might stimulate wider think-
ing in the profession. We shall see evidence of that in Chapter 3.
Worcester too merits further consideration. He lived a long and active life
and his key later work remained in print for many years after its first ap-
pearance in 1935. Although he was not associated with the American homes
for the dying, his ideas and thinking did, by contrast, influence the main-
stream. He was a family doctor who championed the importance of nursing
care and established the Waltham Training School for Nurses in 1885, as well
54

54 To Comfort Always

as holding a chair at Harvard Medical School. His book bemoaned the lack
of interest in the care of older people and is often seen as a forerunner to the
modern field of geriatrics. Described by one admirer as having a ‘nineteenth
century essence’ with an awareness of the ‘new needs of the twentieth cen-
tury’,35 the work was an ‘early inspiration’ to Cicely Saunders when she first
read it in 1951, at a time when she had little material to feed her growing ap-
petite for works on terminal care.36 In due course, it led to Worcester being
hailed as an indirect pioneer of palliative care.37 Worcester’s short work is
packed full of the kind of practical wisdom that seems to have prevailed in the
terminal care homes. He describes how to recognize the signs of approaching
death. He refers to the ‘process of dying’, its associated symptoms, the role of
fluids, and the problem of restlessness. He attends to the environment of the
dying person’s room, to the need for light and for ventilation. He endorses the
liberal use of opiates and considers morphine to have ‘no rival’. He also deals
with the role of faith and religion, with visions and hallucinations and with
the question of uncertainty. Moreover, he refers to the works of Osler, Munk,
and other nineteenth-​century commentators on the care of the dying and he
regrets the lack of progress since their publication.
Many doctors nowadays, when the death of their patient becomes imminent, seem
to believe that it is quite proper to leave the dying in the care of the nurses and sor-
rowing relatives. This shifting of responsibility is unpardonable. And one of its bad
results is that as less professional interest is taken in such service, less and less is
known about it.34

Accounts of patient cases in the terminal care homes from the late nineteenth
century reveal that something was known and that it had the power to influ-
ence others, if only the right mechanisms for dissemination could be found. It
might well be that the strong religious orientations of the homes were a bar-
rier to wider influence. Worcester, for example, seems careful not to labour
the significance of religious elements in care of the dying (‘this subject is gen-
erally conceded to belong to the clergyman rather than the physician’).
Nevertheless, in the specialist homes, religious and denominational under-
pinnings played a large part in determining their organization, atmosphere,
patterns of care, and attitudes towards death and dying. To varying degrees
across the homes, tending to bodily suffering was a precursor to the more
important goal of fulfilling a patient’s spiritual needs. The provision of the
‘soul-​cure’, although manifested in different ways in each of the homes, was
central to the management of the deathbed. Humphreys has shown how the
early London hospices and homes for the dying had three sets of concerns: re-
ligious, philanthropic, and moral.17 Such institutions placed a strong empha-
sis on the cure of the soul, even when the life of the body was diminishing.
55

Possibilities of wider influence 55

They drew on charitable endeavours and were often motivated to give suc-
cour to the poor and disadvantaged. They were not, however, places in which
the medical or nursing care of the dying was of marked sophistication, and
it is difficult to gain a detailed picture of the patterns of medical care that
prevailed, particularly in the earlier period, with the exception of Sprott’s
article. Although rooted in religious and philanthropic concerns that would
diminish as the twentieth century advanced, the early homes for the dying
represent a vital prologue to the subsequent period of development that fol-
lowed in the decades after World War II. Part of the shift was also associated
with the decline in the incidence of tuberculosis and the growing visibility
of patients with cancer. Sister Francis Rose O’Flynn spent many years at Our
Lady’s Hospice until she died in 2011, and for a time she was Superior General
of the Religious Sisters of Charity. Speaking in 2004, she describes the context
in Dublin some 50 years earlier.
Now what happened here really, in Our Lady’s Hospice, was that when it was built
in 1879 the main purpose was to care for the dying, to give them care and comfort
in the last days of their life. And by the mid nineteen forties or early nineteen fif-
ties going into the early fifties, the infections that were really prevalent at that time,
mostly tuberculosis and other kind of infections, they were pretty well eradicated by
antibiotics and other types of therapy like that. So that the type of patient that was
really in the hospice, most of them were either cured or they were sent home, or they
went out to a sanatorium. So that this was a very big establishment, there were over a
hundred beds and there were a lot of vacant beds, and a lot of people then that came
in after that were elderly. Now they were varied, there was no specific category of pa-
tient admitted to hospital. They were all very ill, not necessarily terminally ill. And
that really, I think changed in a sense, the whole emphasis of hospice. They were all
very ill … because all the time there were cancer patients admitted but they weren’t
getting special cancer care until the seventies.38

By such routes, some of the homes, like St Joseph’s and the Hostel of God in
London, and Our Lady’s in Dublin, made the transition into the new era of
hospice and palliative care as a specialized area of activity. It is on this grow-
ing specialization that we now focus our attention.

Notes
1. Abel-​Smith B (1964). The Hospitals 1800–​1948. London, UK: Heinemann.
2. Abel EK (2013). The Inevitable Hour: A History of Caring for Patients in America, p. 68.
Baltimore, MD: The Johns Hopkins University Press.
3. Corr CA, Nabe CM, Corr DM (2009). Death and Dying, Life and Living, 6th ed.,
p. 189. Belmont, CA: Wadsworth.
4. Rosenberg CE (1987). The Care of Strangers: The Rise of America’s Hospital System.
New York, NY: Basic Books.
56

56 To Comfort Always

5. Wood WR, Williamson JB (2003). Historical changes in the meaning of death in the
western tradition. In: Bryant CD (ed.). Handbook of Death and Dying, vol. 1, p. 16.
Thousand Oaks, CA: Sage Publications.
6. Broome HI (2011). Neither curable nor incurable but actually dying. Unpublished
PhD thesis. University of Southampton, UK.
7. Schofield AT (1891). A home for the dying. Contemporary Review (March):423–​7.
8. Healy TM (2004). 125 Years of Caring in Dublin; Our Lady’s Hospice, Harold’s Cross
1879–​2004. Dublin, Ireland: A and A Farmer.
9. Bouillat JMJ (n.d.). Les Contemporains—​An Early Twentieth Century Essay on the
Life and Work of Jeanne Garnier. [Place and publisher unknown.]
10. Moulin P (2000). Les soins palliatifs en France: Un movement paradoxal de medical-
ization du mourir contemporain. Cahiers Internationale de Sociologie, 108:125–​59.
11. Clark D (2000). Palliative care history: a ritual process. European Journal of
Palliative Care 7(2):50–​5.
12. The National Archives. Records of the Mildmay Mission Hospital. Available at http://​
www.nationalarchives.gov.uk/​a 2a/​records.aspx?cat=387-​mm&cid=0#0, accessed 17
December 2013.
13. Humphreys C (1999). ‘Undying spirits’: Religion, medicine, and institutional care of
the dying 1878–​1938, p. 48. Unpublished PhD thesis. University of Sheffield, UK.
14. Sister Mary Eucharia (1965) The apostolate of Rose Hawthorne. Sacred Heart
Messenger:46–​9.
15. St. Rose’s home in Manhattan to close (2009). Catholic New York (26 February).
Available at http://​cny.org/​stories/​St-​Roses-​Home-​in-​Manhattan-​to-​
Close,2608?content_ ​source&category_​id&search_​fi lter&event_​mode&event_​ts_​
from&list_​t ype&order_​by&order_​sort&content_​class&sub_​t ype=stories&town_​id,
accessed 21 March 2015.
16. Lewis MJ (2007). Medicine and Care of the Dying: A Modern History. Oxford,
UK: Oxford University Press.
17. Humphreys C (2001). ‘Waiting for the last summons’: The establishment of the first
hospices in England 1878–​1914. Mortality, 6(2):146–​66.
18. Hospice History Project: Cicely Saunders interview with Neil Small, 10 July 1996.
19. Lost hospitals of London (n.d.) Available at http://​ezitis.myzen.co.uk/​herefordlodge.
html, accessed 21 March 2015.
20. Hospice History Project: Sister Mary Antonia interview with David Clark, 28
November 1995.
21. Winslow M, Clark D (2005). St Joseph’s Hospice Hackney: A Century of Caring in the
East End of London. Lancaster, UK: Observatory Publications.
22. Goldin G (1981). A proto-​hospice at the turn of the century: St Luke’s House,
London, from 1893 to 1923. Journal of the History of Medicine and Allied Sciences, 36
4:383–​415.
23. Williams CP (1982). Healing and evangelism: The place of medicine in later
Victorian Protestant missionary thinking. In: Sheils WJ (ed.). The Church and
Healing, p. 285. Oxford, UK: Basil Blackwell.
24. St Luke’s House Annual Report (1900), p. 19. Available from Imperial College
Healthcare NHS Trust Archives at http://​discovery.nationalarchives.gov.uk/​details/​
a?_​ref=1591, accessed 17 November 2015.
25. St Luke’s House Annual Report (1905), p. 32. Available from Imperial College
Healthcare NHS Trust Archives at http://​discovery.nationalarchives.gov.uk/​details/​
a?_​ref=1591, accessed 17 November 2015.
57

Possibilities of wider influence 57

26. St Luke’s House Annual Report (1899), p. 30. Available from Imperial College
Healthcare NHS Trust Archives at http://​discovery.nationalarchives.gov.uk/​details/​
a?_​ref=1591, accessed 17 November 2015.
27. Wilberforce W (n.d.). St Joseph’s Hospice, Mare Street, Hackney. The Catholic
Weekly:2.
28. St Joseph Hospice Annals, 1909–​1915. St Joseph’s Hospice Archives, Mare Street,
Hackney, London, UK.
29. St Luke’s House Annual Report (1897), pp. 13–​14. St Joseph’s Hospice Archives, Mare
Street, Hackney, London, UK. Available from Imperial College Healthcare NHS
Trust Archives at http://​discovery.nationalarchives.gov.uk/​details/​a?_​ref=1591, ac-
cessed 17 November 2015.
30. St Luke’s House Annual Report (1895), p. 4. Available from Imperial College
Healthcare NHS Trust Archives at http://​discovery.nationalarchives.gov.uk/​details/​
a?_​ref=1591, accessed 17 November 2015.
31. St Luke’s House Annual Report (1913), p. 23. Available from Imperial College
Healthcare NHS Trust Archives at http://​discovery.nationalarchives.gov.uk/​details/​
a?_​ref=1591, accessed 17 November 2015.
32. Notes for Annals of St Joseph’s Hospice, 1905–​1909, pp. 29–​30. St Joseph’s Hospice
Archives, Mare Street, Hackney, London, UK.
33. Sprott N (1949). Dying of cancer. The Medical Press (Feb. 16):187–​91.
34. Worcester A (1935). The Care of the Aged, the Dying, and the Dead. Springfiled,
IL: Charles C. Thomas.
35. Freeman JT (1988). Dr Alfred Worcester: Early exponent of modern geriatrics.
Bulletin of the New York Academy of Medicine, 64(3):246–​51.
36. Saunders C (1992). Letter [on re: Alfred Worcester]. The American Journal of Hospice
and Palliative Care (July/​August):2.
37. Kerr D (1992). Alfred Worcester: A pioneer in palliative care. American Journal of
Hospice and Palliative Care, 9(3):13–​14, 36–​8.
38. Hospice History Project. Sister Francis Rose O’Flynn interview with David Clark, 28
July 2004.
58
59

Chapter 3

Interest and disinterest

in the mid-​twentieth century

Figure 3.1 Ronald Raven (1904–​91)

A London-​based surgeon and former army officer, Raven chaired the
joint committee of the Marie Curie Memorial and the Queen’s Institute
of District Nursing, which in 1952 published its extensive report on the
social and medical conditions of people being nursed at home with
cancer. The report stimulated Marie Curie to establish homes for the
dying and a night nursing service for the terminally ill. Raven went on
to edit a six-​volume series on Cancer, published in 1960, for which he
invited Cicely Saunders to contribute a chapter on the management of
patients in the terminal stage. In 1975 he also edited a collection entitled
The Dying Patient, to which Professor Eric Wilkes was a contributor.
Reproduced by kind permission of the Royal Crown Derby Museum
Trust. Copyright © 2016 the artist’s estate/​Bridgeman Images.
60

60 To Comfort Always

The creation of the welfare state

At the time of its establishment in Britain in 1948, the National Health Service
(NHS) was unique. Offering free medical care to the entire population, it was
a comprehensive system of universal entitlement based on collective provi-
sion of healthcare within a market economy.1 It was to replace charity, de-
pendency, and moralism with a new ethic of social citizenship.2 The creation
of the NHS signalled the final phase in the evolution of the voluntary hos-
pital movement, which had first got underway 200 years earlier. As Charles
Webster3 has shown, the voluntary hospitals had continued to expand in the
twentieth century, from 783 hospitals in England and Wales in 1911, to 1 255
by 1938, accounting for more than half of all acute services. Nevertheless,
they faced growing problems of financial viability and were increasingly reli-
ant upon patient fees. Their development had been piecemeal and adminis-
tratively complex, and there was a sense that the new scientific and technical
knowledge in medicine was outpacing improvements in services. As financial
and administrative strictures tightened, the work of the voluntary hospitals
was matched increasingly by the responsibilities of local authorities—​for ma-
ternal and child welfare, district nursing, midwifery, tuberculosis aftercare,
and for the care of those with mental illness and physical disabilities. The
voluntary hospital legacy would continue to make its influence felt, however,
even as the new system of health and welfare took hold.
From the outset, the organization of the NHS was a matter of immense
complexity. The major problem, according to Webster, was ‘to convert a de-
fective and ramshackle collection of inherited medical services into a modern
health service appropriate to the needs and expectations of the second part
of the twentieth century’.3 Underpinning this was an intensely moderniz-
ing ethic that entailed a deep ideological suspicion of charity and made cure
and rehabilitation its clinical goals. As various commentators have observed,
Aneurin Bevan captured this in stark fashion when, as Minister of Health
in the postwar Labour government led by Clement Atlee, he introduced the
NHS bill to the British Parliament. He stated he would ‘rather be kept alive in
the efficient if cold altruism of a large hospital than expire in a gush of sym-
pathy in a small one’.4 With such priorities, there was to be little attention
paid to medicine’s ‘failures’—​t hose in their last illness, whose time was short.

From cradle to grave?

In the early years of the NHS, we see no strategic or operational guidance
on terminal care and no systematic commitment to the subject as a clinical
issue. The UK welfare state was seeking to vouchsafe care ‘from the cradle to
the grave’, yet at the beginning it paid scant attention to care at the end of life,
61

From cr adle to gr ave? 61

focusing instead on addressing the widespread acute and chronic health prob-
lems of a society grappling with postwar social and economic reconstruction.
Fortunately, two major reports written during the 1950s provide evidence
on the care of dying people, and upon the actual and potential organization of
terminal care services. Although both emanated from outside the portals of
the NHS, they painted a picture of need at that time, and they contributed to a
modest shift in medical discourse on terminal care. Slowly, anecdote gave way
to evidence as an orienting theme in care for the dying. The provision of such
care remained the primary concern of charitable organizations, but by the
early 1960s, a new discourse was emerging. It did so, however, against a back-
ground of policy neglect and clinical disinterest, which was slow to dissipate.
The period from 1948 to 1967, therefore, displays some marked innovations
in thinking and practice relating to terminal care, but also some obdurate
continuities with the past. It is this combination of innovation and tradition,
oddly located within the fissures of the modern welfare state, which provided
the conditions of possibility for later hospice and palliative care expansion.
Upon these rather fragile foundations, the groundbreaking and deeply con-
sequential work of Dr Cicely Saunders was gradually established, from the
appearance of her first publication on terminal care in 1958 (written while
still a medical student) to the opening of St Christopher’s Hospice a decade
later.5 Led by her efforts, a particular view of ‘modern’ terminal care began to
emerge from the late 1950s, which eventually had the power to consolidate
into a strategy for action, initially at arm’s length from the NHS, but even-
tually with wide-​ranging effect. Moreover, as we shall see in Chapter 4, there
was far more to Saunders’s achievements, as she first helped define a new field
of care and then promulgated it locally, nationally, and internationally.
Concerns about how and why to care for the dying had slowly developed in the
first 20 years of the NHS. There were divided views within medicine about the
legitimacy of care at the end of life as an area for specialization. Older doctors
clung to a paternalist viewpoint, in which their primary role was that of the com-
prehending and sympathetic friend to the dying. The first wave of doctors who
trained wholly within the NHS, however, produced some who later made care of
the dying a specialized clinical, research, and teaching endeavour. Between these
lay a not insubstantial body of medical opinion that lent at least some support
to changes in the law on euthanasia, now seen as the deliberate ending of life by
medical means. The proponents of hospice care and the supporters of legalized
euthanasia were usually at loggerheads. Further tensions emerged in the debate
about how much attention should be given to the dying elderly in general, as
opposed to those of any age dying of cancer. This was resolved through further
specialization, which undoubtedly led to geriatrics and terminal care becoming
separate from one another as areas of expertise. Finally, a narrative appeared, in
62

62 To Comfort Always

which those who did champion the cause of terminal cancer care found them-
selves struggling in the face of a more deep-​seated resistance to the notion that
medical, religious, and social care of the dying deserved any special recognition
on the part of either the practitioners or policymakers.

Social conditions for the dying in 1950s Britain

The two major reports in question, compiled at the beginning and end of the
1950s, cast light on the social conditions for those dying in Britain during that
decade and also served as powerful rhetoric for change. The first was prepared
by a joint committee of the Marie Curie Memorial and the Queen’s Institute of
District Nursing, and was chaired by the surgeon Ronald Raven (Figure 3.1).6
The Marie Curie Memorial was established in 1948 and held among its objec-
tives the promotion of welfare and relief for cancer patients. A joint com-
mittee of the Memorial and of the Queen’s Institute first met in 1950 with
the purpose of investigating the needs of domiciliary cancer sufferers and
its report was published two years later. Dr H. L. Glyn Hughes prepared the
second report at the request of the Calouste Gulbenkian Foundation, based
on enquiries carried out between November 1957 and December 1958.7 It
contained a description of current provision for the care of the dying, to-
gether with recommendations for development.

Concerning patients with cancer nursed at home

The joint committee’s objective was to undertake a national survey of patients
with cancer living in their own homes, with special reference to their circum-
stances and needs. It adopted a method that involved sending questionnaires
to district nurses across the country from February to August 1951, and 179 of
the 193 local health authorities that were approached cooperated in the survey.
Nearly 70 per cent of the patients were aged 60 years or over, and more than 24 per
cent were 75 years or over. It was among these older people that some of the grav-
est social problems were found, as the descriptions of different patients bear out.
Illness very far advanced when friends called a doctor, and who lived in extreme
squalor, resisting any attempt to wash or care for her.
Alone in a bed-​sitting room, seldom visited by her married children, relying on the
goodness of neighbours … receiving very little nourishment.

Or, more graphically still, this account.

House was dirty as she was too ill to clean it, and her clothing filthy with neglect and
discharge from the ulcer … gave food to her pets which she needed herself.6

There were numerous examples of delays in seeking treatment, or even of the

refusal to be treated. A high proportion of patients were considered gravely
63

Social conditions for the dying in 1950s Britain 63

ill at the time of the survey, and district nurses often believed they had been
called in at too late a stage of the illness. More than half of the patients were
reportedly bedridden. The nurses also described the mental suffering of their
patients.
He does not become depressed by the very acute pain, but becomes very despondent
and loses faith in every possible way as he feels he is gradually worsening, and that
no-​one is taking any interest …6

The survey placed a strong emphasis on the physical conditions in which the
patients lived. Almost a third had only one room in which to live, less than
half had running water, and almost 40 per cent had no accessible lavatory.6
The report concluded with a series of recommendations, including the need
for more residential and convalescent homes; the importance of better infor-
mation for cancer sufferers; and greater provision of night nursing, home-​
help services, and equipment. Some patients, the report indicated, were un-
aware of the provisions of the NHS Act, or of their eligibility with the National
Assistance Board.
Stunned by the results, the Marie Curie Memorial alone was galvanized
into action and, within a year of the report’s publication, it had begun open-
ing new homes for terminally ill cancer patients. Hill of Tarvit, established
in Cupar, Fife, in east Scotland was the first, in December 1952. The prop-
erty was leased from the National Trust for Scotland and contained an array
of antiques and fine furnishings. Over the next 12 years, nine more Marie
Curie Homes opened, from Tiverton in Devon in 1953, to Solihull in the west
Midlands in 1965. They were each housed in converted buildings, including
a preparatory school, a railwaymen’s convalescent home, a police orphanage,
and a handful of lavish mansions. In 1958, provision was further extended
by the addition of a night nursing service; and by the early 1960s, 24 authori-
ties in the provinces and 15 London district nursing areas were being served
by over 200 Marie Curie nurses.8 There is no evidence, however, of any sys-
tematic response to the report from elsewhere within the public health and
welfare system.

‘Peace at the Last’

The second report was prepared by Brigadier H. L. Glyn Hughes. A former
army doctor, he had been the first allied medical officer to enter the Belsen
concentration camp at the end of World War II. Like the joint committee, he
gave considerable attention to the social conditions of the terminally ill, but
his report was more wide-​ranging, and devoted greater prominence to mat-
ters of policy and service organization.7 His focus was on the terminal care of
64

64 To Comfort Always

those with a life expectancy no greater than 12 months, and particularly in

the very last stages of life. He began by highlighting the fact that while numer-
ous enquiries and reports existed on the medical and social problems of the
aged and the chronic sick, none had given adequate attention to the problem
of terminal care. A particular aspect of his enquiry was concerned with ‘the
extent to which the Welfare State has made adequate provision to deal with
this problem both now and in the future’.7 Against the background of the
Joint Cancer Survey Committee’s findings, Glyn Hughes was concerned with
the unanswered questions of where and by whom the elderly terminally ill
would be cared for.
The Glyn Hughes survey sought information from every medical officer of
health in the United Kingdom; in addition, the senior administrative medical
officers who were responsible for hospital services throughout the regional
hospital boards provided a range of statistical data on the use of hospitals
for terminal care. Many voluntary organizations, religious orders, and other
groups were also consulted, and 300 site visits were made. The National
Council of Social Service provided information on 150 of its local councils.
Finally, a survey was conducted of over 600 family doctors.
The report showed that two-​fifths of all deaths in 1956 occurred in NHS
hospitals, with under half taking place in the home. Almost 46 000 cancer
deaths (approximately one-​t hird of the total) took place at home, and it was
considered that many of these would have required continuous medical and
nursing care. Similar needs were thought to be in evidence among some of the
121 000 who died at home from diseases of the circulatory system. Overall,
Glyn Hughes estimated that some 270 000 people in need of ‘skilled terminal
care’ died each year outside of NHS hospitals.
The report’s conclusions were prescient and acknowledged that ‘for a long
time to come there will remain a need to make use of accommodation out-
side the NHS, both in voluntary and profit-​making establishments’.7 By the
former, he referred to homes for the dying run by charitable organizations
and religious orders, of which (as we have seen) only a small number existed.
By the latter, he made reference to the much larger number of nursing homes,
which would increasingly come into private ownership. Neither group, in his
view, could be given a clean bill of health. His comments were chastening. In
the homes for the dying, although ‘love and devotion’ were in evidence from
the staff, there were poor staff–​patient ratios, a paucity of fully trained nurses,
austere conditions, a lack of comfort, and an air of financial constraint.
Among the nursing homes, a large proportion were deemed ‘quite unsuited to
provide the terminal care of patients who, in their last stages, require the most
skilled nursing attention; in fact, in many of them the conditions are bad, in
65

Social conditions for the dying in 1950s Britain 65

some cases amounting to actual neglect when measured by standards that can
reasonably be expected’.7
While dying at home was seen as the preferred option for most patients,
Glyn Hughes stressed the importance of calculating the total number of in-
patient beds that would be needed for terminal care. He was eager to stress
the value of special terminal care beds within the curtilage of hospitals for the
acute sick. At the same time, he considered that the independent homes for
the dying should develop closer links with hospital services to reduce their
isolation.
The report quickly had a wider impact and some major medical journals
now began to take an interest, as in this review of the report in The Lancet:

We must attack the problem on every side: hospital services must be improved
and extended, staff in residential homes increased, and voluntary as well as profit-​
making institutions helped in return for an approved standard of care.9

At the same time, The Lancet’s reviewer recognized some impediments: the
limits to hospital expansion; the inadequate supply of trained district nurses;
and a lack of home help. The journal did however endorse Glyn Hughes’s rad-
ical suggestion that payment be made to women for the full-​time care of their
dependent relatives.

Bookends
Like bookends at the start of the 1950s and the 1960s, these two reports high-
lighted the deficiencies of terminal care in the welfare state of Britain at the
time. The joint committee had drawn attention to the abject social and eco-
nomic conditions of many elderly people suffering with advanced cancer.
Glyn Hughes had revealed the absence of a serious policy commitment to
terminal care provision; indeed, his recommendations highlighted the need
for voluntary and for-​profit organizations to work in conjunction with the
NHS to achieve the necessary results.
Both reports had alluded to a perceived underlying change in family values
likely to have a bearing on the situation. Neither was categorical on whether
or not families had become less willing to look after their sick and depend-
ent members—​a lthough Glyn Hughes reports that this was widely perceived
by general practitioners to be a consequence of the introduction of the NHS.
Rather, a picture emerges of families struggling to balance a range of pressures
and responsibilities. So the joint committee refers to the problems of relatives
who have to earn their living during the day and may suffer from fatigue and
undue stress from night-​sitting over a prolonged period.6 Meanwhile, Glyn
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66 To Comfort Always

Hughes concluded that in a period when large sections of the population were
moving to new towns and suburban estates, ‘with the much smaller family
of today the provision of help by relatives will get less and the requirement of
institutional care at the end will increase’.7
Coupled with mounting demographic evidence, the reports argued for ter-
minal care to become a priority for the NHS. By 1951, more than 10 per cent
of the population was over 65, compared to less than 5 per cent in 1901. It
was also an era that marked a shift from a high mortality rate associated with
infectious disease towards a greater awareness of chronic illness and the long-​
term effects of disabling conditions.
On their own, these reports were not sufficient to create a sea change in
policy. They did, however, stimulate, and were in turn strengthened by, a
growing clinical interest in questions of terminal care that slowly drew at-
tention to the needs of those in the final stages of life. As this interest mani-
fested itself in published research and commentary, so it served to promote
the conditions that would allow further fundamental developments to take
place, and for the needs identified in the reports to be addressed.

Clinical discussions: From anecdote

to a semblance of evidence
In August 1948, just one month after the foundation of the NHS, The
Practitioner journal devoted a series of papers to the question of care for the
dying. It was introduced by Lord Horder, the Physician in Ordinary to the
King, who captured the overall tone of the collection in a combination of aph-
orisms and proverbs about death, coupled with simple descriptions of par-
ticular cases and warnings against the danger of prolonging the act of dying,
in the name of extending life.10 A key paper in this important issue of The
Practitioner was by W. Norman Leak, a physician from Winsford in Cheshire,
who was a regular writer for medical journals on a range of topics over several
decades and later a council member of the British Medical Association. His
piece here was on the care of the dying patient. It begins with the wider social
context. A ‘paradoxical and awkward situation’ had been reached, in which
death was commonly occurring at advanced age (when dying is said to take
longer) and where medical and nursing skills were contriving to prolong life.
At the same time ‘relatives are not available or willing’ to undertake care at
home. The tone on matters of policy was fatalistic: ‘However desirable it may
seem to some that all old people should obtain the best skill and care in their
dying moments, it seems pretty clear that this will remain an ideal for a long
time to come.’11 On questions of clinical care, the individual practitioner’s
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Clinical discussions: From anecdote to a sembl ance of evidence 67

personal beliefs, attitudes, and morality seemed to be the chief elements in

the armamentarium.
If he thinks that death is the end of all things and the sooner it is over the better
for all concerned, then obviously a few doses of morphine or, even more rapid, no
morphine at all, is all that is required. If, however, he is one who believes that kind-
ness and goodness have absolute values and that there is some existence beyond the
grave, his treatment will be much more individual and discriminating.11

Leak deals with nursing care under the headings of ‘incontinence’, ‘the bowels’,
and ‘care of the mouth’. A section on ‘the relatives’ offers advice on the emo-
tional situations that can occur. Its tone is blunt and provocative: ‘It is wise to
put the brake on somehow, usually by giving one or two something definite
to do, and by giving the ringleaders a good dose of a barbiturate with a cup
of tea.’ Medical treatment ‘can almost be written in one word—​morphine’, al-
though it may require the doctor to attend twice daily to deliver the injections
if no trained nurse is available. The anecdotal tone is captured fully in the
conclusion: ‘What has been written has not been culled from books but is the
result of experience, often gained by fumbling with no one more experienced
at hand to guide me …’
There is no emphasis in this collection of papers upon clinical innovation
in the care of the dying. There is, however, a sense that some of the personal
attributes that the general practitioner brings to the care of dying patients
may be lost—​‘dismissed as mere tosh’—​by the younger generation of doc-
tors and eroded by the growing tendency for patients to be cared for in ‘the
clean efficiency of the large hospital’, rather than the ‘less exacting routine of a
local cottage hospital’. There is a sense here of modern mid-​twentieth-​century
medicine having no space for the personal involvement of doctors, however
paternalistic, in the care of their dying patients; yet, at the same time, having
nothing with which to replace that involvement. Interestingly, Leak’s paper
contains not a single reference of any kind to a published source or study on
the subject of the care of the dying, and it appears ignorant of the work already
discussed here of the nineteenth-​century writers, and of Alfred Worcester.
A general practitioner in the Scottish Highlands, Dr John Berkeley, who
was just starting out in the mid-​1950s, provides a fascinating personal insight
into some of the challenges faced in caring for patients at home with advanced
disease at that time.
I can very, very clearly remember, within the first year or two of going into practice,
a lady with advanced cervical carcinoma dying at home. And we were giving quite
large doses of morphine. I mean they seemed lethal doses to us in those days. Now,
looking back with hindsight, I think we were giving adequate doses but not fre-
quently enough, and they were intermittent. And my feeling of utter helplessness, of
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68 To Comfort Always

trying to help, not only this woman, but her husband and her daughters, and feeling
that I had not got the skills at that time (and this was about two years into practice),
to actually deal with this situation. It made quite a profound impact. I mean I can
still now visualise the house, and the woman, and the many calls I made to that
household. So that must have been ‘55 or something like that and it made quite an
impression on me, care of people. Not just care of the dying, because one was look-
ing after many elderly people who were dying very peacefully, I mean that was a
normal part of general practice, but dying in pain, and again … a relatively young
woman, I think she must have been in her, probably, mid-​forties or something like
that, made quite a profound impression on me at the time. And stimulated me to
read, to see what there was that one could do to help. And there was very, very little
in the literature in those days to give any indication. So that was the sort of back-
ground; you went against sort of traditional teaching and therapeutics to try and
help a patient. But reading around in those days, reading the literature; there was
nothing else to guide you.12

It was to be more than a decade before the first twentieth-​century studies on

these matters began to appear and, during the 1950s, even anecdotal pub-
lications on the care of the dying were rare indeed. At the British Medical
Association’s annual meeting held in Newcastle-​upon-​Tyne in July 1957,
a plenary session took place on the subject and was reported in the British
Medical Journal.13 Dr Ian Grant’s comments at the conference were later pub-
lished in full. Drawing on over 30 years’ experience in general practice but
no published work, he concludes with this about his dying patients: ‘They re-
quire kindness most of all, and they first and foremost wish and hope to find
a comprehending and sympathetic friend in the physician.’14 Again, the duty
of the general practitioner was seen as that of bringing contentment and com-
fort to dying patients and not to simply strive to prolong life. A plea was made
for more hospital accommodation for the moribund, and Grant argues that
the welfare state should make it a priority ‘to provide adequate hospital and
nursing care for those who have served their country well and whose life is
now drawing to a close’. Morphine continued to be the preferred drug in cases
of terminal malignant disease, but in his view, which perhaps reflected wider
sentiment, it should be withheld as long as possible to counteract problems
of tolerance. In cases of desperation, however, the ‘first duty is to relieve pain
and to induce merciful oblivion’.
There was considerable tension in this debate about the benefits and haz-
ards associated with the liberal use of morphine. A widely read article by
Clifford Hoyle, published in 1944 and based on a lecture given at Horton
Hospital in 1941, had characterized the physician as the sole arbiter of pain
relief for the dying. If this meant hastening the death of the patient, with no
prior discussion with patient or family, then this was a matter about which
the doctor should keep his own counsel. While it remained illegal to end the
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Clinical discussions: From anecdote to a sembl ance of evidence 69

life of the patient in a deliberate fashion, albeit for kind and medical reasons,
it was rarely questioned, or acted upon in law. However, it could be brought
about by rapidly escalating the dose of morphine.15 In similar fashion to The
Practitioner articles of 1948, Dr W. N. Leak had argued that morphine is the
drug of choice when death draws near. It is unclear whether the ‘overdose’
referred to here is deliberate or not:
There is no drug to touch it for dying folk and … contrary to common belief mor-
phine does not hasten the end unless the patient is abnormally sensitive or an over-
dose is given’.11

However, other influential authors, particularly those from the United States
and those with surgical backgrounds, advised that all other means of con-
trolling pain (both pharmacological and non-​pharmacological) should be
pursued before resorting to the use of morphine. A surgeon from Illinois re-
ported in 1956 that ‘we are often loath to give liberal amounts of opiates be-
cause the drug addiction itself may become a hideous spectacle and actually
result in great misery for the patient’.16 This position, encouraged by sustained
investment in work directed at finding a non-​addictive analgesic by the US
National Research Council,17 clearly had a transatlantic influence, and the
advice about withholding morphine in favour of new alternatives was pro-
moted in UK textbooks and other publications.18 Much of the fear came from
a lack of knowledge about how to use morphine properly. Professor Duncan
Vere reflects on his experience in London and is scathing in his comments.

I will say that until about 1965 in hospitals—​general hospitals and general practice—​
there was entrenched ignorance, a tremendous amount of severe pain. Patients who
were in severe pain, or dying with pain, were often given the Brompton Cocktail
(or Mist Obliterans as it was politely known), and it was a matter of patients being
rendered so that they did not know what they were doing by doctors who certainly
did not know what they were doing.19

The dominance of the specificity theory of pain was another major contribu-
tor to the ambivalence about the medical use of morphine for cancer pain
in the mid-​twentieth century. The theory argues for a specific pain system
that carries messages from receptors in the skin to a pain centre in the brain.
Accordingly, a logical treatment was to attempt to interrupt the pain system
by means of nerve blocks or surgical sectioning of the spinal cord or brain.
The development of these procedures flourished as surgery and anaesthesia
reached their ascendant position in the hierarchy of medical specialities,
which took hold after World War II.
For a prolonged period after World War II, serious efforts were made in the
United States to find an alternative analgesic that was as effective as morphine,
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70 To Comfort Always

but with less addictive potential. These studies were led by Dr Ray Houde,
Ada Rogers, and later Dr Kathleen Foley at the Sloan Kettering Institute for
Cancer Research in New York. Houde’s team conducted multiple long-​term
crossover trials, comparing new analgesics with morphine in cancer patients.
The study patients, who acted as their own controls,20 received medication for
moderate pain with rescue medication if the initial dosage did not relieve the
pain. They had hourly visits from Rogers, the research nurse, through the day.
One unanticipated outcome of this innovative work was the development of
a patient-​centred technology for testing analgesics, on which modern anal-
gesic trails are now based. This involved entering and trying to understand
the patient’s pain experience. Another outcome was the gradual realization
that morphine, when the dose was properly titrated and used regularly, was
the best drug available and that all of the many substitutes tested could not
compare to it.
John Bonica, chief of anaesthesiology at the Madigan Army Hospital in
Washington during World War II, developed his interest in ‘abnormal pain’
from his experience of trying to treat wounded servicemen. After the war, he
embarked on a formidable programme of personal research, encompassing
material written about pain in medical, phenomenological, and historical lit-
erature. He later argued that pain is what individuals feel, think, and do about
the symptoms they perceive, and that patients in pain need their doctor’s ‘sym-
pathy and kindness’. He published the first textbook of pain medicine in 1953,
and later on in his influential career, he corresponded with Cicely Saunders
and worked with other clinicians interested in pain and palliative care.
Saunders’s philosophy for the care of the dying had many parallels with
Bonica’s work. Against accepted wisdom, she insisted on the absolute neces-
sity of administering opiates regularly to patients with pain due to cancer.
Her previous experience as a nurse meant that, when working as a volunteer
at St Luke’s home in Bayswater, she sought to understand why the nurses did
not follow medical instructions to only give pain relief ‘as required’, instead
giving it ‘by the clock’ every four hours.21 She went on to argue that opiates
used in this way were not addictive, and that patients receiving such medica-
tions could live out their lives in comfort and quality. Saunders also argued
that opiates administered orally (as opposed to those given by injection) were
effective and that they worked by relieving pain, not just by masking it.

Medicine and euthanasia

Parallel to this type of commentary and developing medical practice for pain
and end-​of-​life issues was the discussion within medicine on the question of
euthanasia. The Voluntary Euthanasia Legislation Society had been founded
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Clinical discussions: From anecdote to a sembl ance of evidence 71

in 1935, the year it held its first public meeting at BMA House (home to the
British Medical Association). The following year, a bill was introduced into
the House of Lords seeking to legalize the voluntary euthanasia of willing
adults suffering from fatal disease accompanied by severe pain. The 1936
bill was unsuccessful and, in 1950, a further attempt was made to bring it
to the statute book, again without success. On the latter occasion, four med-
ical peers (Lord Horder, Lord Webb-​Johnson, Lord Haden-​Guest, and Lord
Amulree) all spoke against it. A leading article in The Lancet, echoing the
words of Lord Horder in the debate, commented that ‘the good doctor will
distinguish between prolongation of life and the unnecessary prolongation of
the act of dying’.22 By such means, it supported the contrivance to obscure the
role of the doctor at the dying patient’s bedside. At the same time, it acknowl-
edged that public interest in the issue of euthanasia remained considerable.
In a letter in response to The Lancet article, Dr C. K. Millard, the found-
ing honorary secretary of the Voluntary Euthanasia Legalisation Society, ac-
knowledged that the opposition of medical peers ‘was very unfortunate from
our point of view and scarcely gave the motion a chance’.23 However, he went
on to remind readers that an eminent surgeon, the late Lord Moynihan, had
founded the society and that currently it had the support of 170 distinguished
members of the medical profession, 30 of which had knighthoods.
Paradoxically, as evidence began to accrue on the current state of care for
the dying, medical opinion against euthanasia hardened, as seen in this ex-
cerpt from a 1961 lead article in The Lancet:
If the known means to make death, when it comes, easy and happy were applied by
individual and collective effort with intelligence and energy, could not all but a few
deaths be made at least easy and, in our ageing population, even happy? And should
we not avoid this pressure to assume the right—​even the duty—​to take life, with all
the implications and consequences that assumption carries?24

The writer was referring here, not just to the recently published report by
Glyn Hughes, but also to a new study by Arthur Norman Exton-​Smith and to
the writings of Cicely Saunders, which were now beginning to appear in the
medical literature. Exton-​Smith was among the first since the joint commit-
tee to gather systematic evidence on the conditions of dying patients, while
Saunders, from her earliest publications, was a vehement opponent of eutha-
nasia, and a tenacious advocate of new thinking and a more positive approach
to the care of the dying.

New evidence
Exton-​Smith,25 a physician at London’s Whittington Hospital, reported his
observations on a series of 220 patients, aged 60–​101 years, in which he found
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72 To Comfort Always

that 25 per cent died within the first week of admission to hospital and 82
per cent within three months. Exton-​Smith’s purpose was to assess the pain
and distress experienced by this group of patients, who had a range of malig-
nant and non-​malignant diseases, including conditions of the cardiovascular,
locomotor, and central nervous systems. He argued, following Worcester,26
that a ‘natural death’ in old age is experienced by but a few. Interestingly,
given the hospice movement’s subsequent emphasis on cancer, he suggested
that this was less likely to be a cause of pain and suffering in the elderly than
in younger patients, and that ‘processes which lead indirectly to death are
associated with most pain and suffering’—​in other words, the chronic con-
ditions. Nevertheless, effective analgesia in the form of narcotics was usu-
ally denied to these patients because of fear of habit formation. Exton-​Smith
noted that ‘the suffering of this group of patients was aggravated by the fact
that they were all mentally alert and recognised their helplessness’.26 Echoing
Glyn Hughes, Exton-​Smith called for more comprehensive inpatient facili-
ties, allied to hospitals, for terminally ill patients who could not be cared for
at home.
Exton-​Smith and Saunders had been in contact with each other since
1959, when he had visited her at St Joseph’s Hospice in Hackney, in the East
End of London. Subsequently she had commented on the draft of his paper
in The Lancet, as had Dr Leonard Colebrook of the Voluntary Euthanasia
Legalisation Society. At this time, and following initial training as a nurse and
almoner, Cicely Saunders was working at the hospice as a medical research
fellow, undertaking clinical work, and compiling detailed information on a
series of patients admitted there.
Her first publication on the care of the dying appeared in 1958 in St Thomas’s
Hospital Gazette,27 and the following year the Nursing Times published a series
of six of her articles on the subject.28 Like the earlier medical commentary of
the 1950s, these articles relied heavily on individual case descriptions and
were anecdotal in style. At the same time, they contained a level of detail that
quickly indicated something more substantial. There was a narrative quality
about the descriptions which reflected Saunders’s interest in carefully listen-
ing to the patients’ stories, and the studies she began led on to papers that
reported a growing series of patients, from 340 in 196029 to 1 100 by 1967.30
A striking feature of these papers was their articulation of the relationship
between physical and mental suffering, seen in almost dialectical terms, each
capable of influencing the other. 31 Through such writings, Cicely Saunders
was also able to characterize a particular strategy for the care of the dying.
The provision of an institution primarily devoted to what is often called terminal
care should not be thought of as a separate and essentially negative part of the attack
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Clinical discussions: From anecdote to a sembl ance of evidence 73

on cancer. This is not merely the phase of defeat, hard to contemplate and unreward-
ing to carry out. In many ways its principles are fundamentally the same as those
which underlay all the other stages of care and treatment although its rewards are
different.32

To this extent she differed from Glyn Hughes in advocating that more special
homes for the dying should be created as independent facilities, rather than
within the ambit of hospitals. She also departed increasingly from Exton-​
Smith’s focus on the dying aged, fastening her attention on those in the final
stages of cancer, especially those with the most complex problems. She put it
as follows, in a letter to Exton-​Smith in 1960:
Carcinoma of cervix I think is the most difficult both from the point of view of pain
and of general distress; and I think that carcinoma of breast with bone secondaries
probably comes second to that. In both these groups it is the patients between 40 and
60 yrs. who tax our skill.33

It may be no exaggeration to suggest that this brief remark captured a much

wider division that was now beginning to take place between those who would
concentrate their efforts on the care of elderly people in general, which in-
cluded their dying, and those who would focus in particular on people, of any
age, dying from a particular disease, namely cancer. The separation between
these areas of specialization was to prove remarkably consequential in later
years.34 It was no doubt strengthened by the very different social construc-
tions and meanings surrounding old age and cancer, which were appearing
within the wider social consciousness. That said, there was considerable inter-
play at the time between the chief protagonists, as Cicely Saunders recalls:

Dr Exton-​Smith, who was looking after geriatric patients at the Whittington Hospital
in Highgate, was asked by the Chairman of the Voluntary Euthanasia Society to look
at the pain at the end of life among his patients, and he got in touch with me and said
[let’s] meet up with Dr Colebrook who was Chairman, and we had lunch together
at the Royal Society of Medicine, and I said: ‘Well you must come and do a round at
St Joseph’s’, which we did and at the end of it he said: ‘Well, you know, if everybody
could have this sort of care I could disband the Society,’ [chuckles] and he wrote to
me, not saying quite that, but saying that this was solving a lot of the problems, but
alas it’s going to be a long time before it’s going to be really widely spread. But he
remained as a friend to the end of his life.35

Saunders was to become instrumental in defining a new knowledge base of

care for those dying from malignancies. In 1960, her chapter on the man-
agement of patients in the terminal stage, published in Ronald Raven’s six-​
volume set Cancer,36 contained reference to 40 published works; by 1967, her
pamphlet on The Management of Terminal Illness37 included 184 references.
By such means, a new field of healthcare practice—​terminal care—​began to
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74 To Comfort Always

be defined. Moreover, based on her experience as nurse, almoner (medical

social worker), and doctor, the field was to be multidisciplinary in orientation.
The early papers by Saunders draw on other contributions, less well known,
but important in shaping this new discourse of terminal care. These include
Margaret Bailey’s survey of patients with incurable lung cancer, conducted
at the Brompton and Royal Marsden Hospitals;38 as well as a survey of public
opinion on cancer;39 and a study of delayed help-​seeking among cancer pa-
tients, which noted that ‘the fact of palliative treatment is not understood,
and hospitals appear to be trying to cure all their patients and failing in a high
proportion of cases’.40
Evidence from the United States was also harnessed, including a study of
terminal cancer care among 200 patients in Boston,41 and a paper on social
casework with cancer patients.42 It was from the United States in particular
that concerns emerged on more psychosocial issues, such as truth-​telling,43
anxiety and depression,44 and anticipatory grief.45 These were further sup-
ported by the early psychiatric work of Colin Murray Parkes on bereavement
and mental illness.46 Cicely Saunders describes her introduction to his work:

I read an article of his in 1965 and I wrote to him saying that I was working with
the sisters who worked with families very intuitively. I knew the staff needed to look
very carefully at our families, and the needs of bereaved people, although I felt that
really good terminal care would make quite a difference to the course of bereave-
ment. And he was really excited and rang me up and I went and had lunch with him
and John Bowlby. From ‘65 he went out and spent a year in Harvard. And I met him
out there and we shared some of the ideas then.47

By the mid-​1960s, research papers on the care at home of people with ter-
minal cancer were being produced by Eric Wilkes, the Derbyshire general
practitioner who later founded St Luke’s Hospice in Sheffield.48,49 In one, he
observed the following:
There seems to be no valid reason why hospital provision for terminal care is so
inadequate, or for the National Health Service to lean so heavily on the few Curie
Foundation Homes and the devoted but over-​worked religious institutions specialis-
ing in this work.50

The entry of Wilkes into the debate was not insignificant. He was a formidable
character. Born into a Jewish family in Newcastle-​upon-​Tyne in 1920, he went
to King’s College, Cambridge, in 1937 to read English. He left Cambridge in
1939–​1940 with a war degree and joined the army as a Signaller. After the
war, he followed through earlier thoughts of a medical career by returning to
Cambridge to study medicine. His early medical training was conducted at
St Thomas’s Hospital, London (1947–​1952). After general medical, obstetric,
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Clinical discussions: From anecdote to a sembl ance of evidence 75

and paediatric training, he made the decision to leave hospital medicine for a
career as a country GP in Baslow, Derbyshire. Eric Wilkes had heard of Cicely
Saunders at St Thomas’s Hospital, and attended one of her talks on care of the
dying in Sheffield in the 1960s.
I’d not known her because she was senior to me, she qualified before me … but I had
heard of her and of her interests, and I heard her lecture once so I thought, ‘Well’,
you know, ‘will it work outside of London?’ Because in London the primary care was
worse than anywhere else in the country. It was the world of the lock up surgery, the
doctor who didn’t speak very good English, the man who referred everything to hos-
pital if it wasn’t obviously just wanting a certificate off work. This was the stereotype
from someone educated at a London teaching hospital, but there was too much truth
in it for comfort. And so … I contacted her and did a round with her at St Joseph’s
and I was impressed by her, ‘cause she’s a very impressive and charismatic lady …
But it was very ‘hospital’. It was very ‘hospital’ indeed and I thought that we could
probably involve a slightly broader community base, with all the quality control of
nursing standards, the common policies of care that a hospital would have, in dark-
est Sheffield. And this festered in my mind for a year or so … 50

Also closely associated with the transition from anecdote to evidence was
Dr John Hinton, who had qualified in psychiatry from London’s Maudsley
Hospital in 1958. As a trainee doctor, he had developed an interest in the
psychiatric problems of terminally ill patients. His paper on the physical
and mental distress of the dying, written in 1962 and published the follow-
ing year,51 was based on research conducted in the period of 1959–​1961 at a
teaching hospital. Hinton pointed out that before Exton-​Smith, only William
Osler,52 over 50 years earlier, had described the incidence, severity, and relief
of distress among the hospitalized dying. Like Cicely Saunders, Hinton was
inclined to a conversational approach to data collection; his 1963 research
paper is based on interviews with 102 patients thought unlikely to live for
more than 6 months, along with controls. Those in the dying group were
more commonly depressed and anxious, and half were aware that their illness
might be fatal. Physical distress was more prevalent in those with heart or
renal failure (57 per cent) than in those with malignancies (37 per cent), and
in general was more severe and unrelieved for longer within the dying group.
He describes how the study came about and was conducted.
Dr Clifford Hoyle put in helpful words with the board to get permission for me to see
the patients if the consultants were willing. I was made an honorary … senior regis-
trar at King’s so I could pop round, and I joined in with some of the general medical
rounds. And then I started interviewing the patients in the ward, with control, in
the same order of an individual who hadn’t got a fatal disorder but some sort of quite
serious parallel disorder, and noted things were likely to affect their mood and state,
which included how much pain they had, something about their family background,
something about their religious beliefs, social class and so on, and then pop back
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76 To Comfort Always

and see them from week to week to see how they fared. And I just sort of carried on
pursuing that for a couple of years, certainly until I’d interviewed over a hundred
patients in each group. I think what I saw as important, I think quite a lot of people
saw as important at that time, is that if one was going to learn about terminal care
and be able to teach it, there should be a factual basis of knowledge. And people at
hospitals and teaching hospitals were still looking a bit askance at what they saw as
a religiously inspired element, as if therefore people who had gone in with a sense of
religious vocation, their evidence, such as it was, was biased and you really couldn’t
take that as the sort of facts you would teach students, or the sort of thing that ought
to carry much weight against what one’s own personal experience, or what other-
wise people had said. And so it was important to bring this evidence together which
had some air of respectability, scientific respectability to it. And so that, I think, is
why the initial paper had been fairly well received, because it did seem to be factual,
it was set out in a scientifically respectable way and it could carry weight. When
I started out on the study I could find very little, by the time I’d come to writing up
the study there were about six factual things, papers or little pamphlets published,
and by the time I’d finished writing the book I’d discovered more and more were
being done, which was good.53

Just as the Exton-​Smith paper had stimulated comment in The Lancet, now
the British Medical Journal took notice in a lead article, ‘Distress in dying’, ac-
knowledging the absence of ‘objective inquiries into this matter’, and praising
Hinton for building on the contribution of Exton-​Smith. The article focused
in particular on mental distress and the need for doctors, described as ‘at a
disadvantage in this respect compared with nurses and patients’ relatives’,
to pay attention to the problem of such distress in their dying patients. By so
doing, ‘we should re-​examine the comfortable supposition that the majority
of our dying patients are not suffering overmuch, or they are not pondering
the outcome just because they do not ask the most dreadful question of all’.54
In response, a letter from Cicely Saunders to the British Medical Journal un-
derscored the importance of giving patients the opportunity to talk (so much a
feature of her methodology and of Hinton’s approach), seeing this as the path-
way to the relief of both mental and physical suffering. More generally, however,
this was an opportunity, building on a lead article in one of the world’s most
eminent medical journals, to press the wider case for terminal care homes.
In spite of what is already being done in this field there remains a need for more units
planned for those patients who do not need the resources of a large hospital and who
cannot be at home. There is also a need for more research and still more teaching
in this unusually neglected subject. It is hoped that a hospice being planned by a
recently founded charity will be able to stimulate further interest and skill in this
important part of medical care.55

The countervailing argument, however, was also in evidence. A letter pub-

lished on the same page from Maurice Millard likewise welcomed the work of
77

Change and continuit y 77

Exton-​Smith and Hinton, but proposed that those ‘not inhibited by dogmatic
religious views’ should use these papers as an opportunity to ‘think again
about our “Hippocratic” ethical opposition to permissive euthanasia—​t hat is
at the request of the sufferer—​when all the resources of physical, mental, and
spiritual help have been exhausted’.56
In fact, Hinton did not offer objections to euthanasia on religious grounds
(though Saunders certainly did). In his important paperback Dying, pub-
lished in 1967, Hinton included a lengthy and balanced discussion of the
subject. Acknowledging powerful arguments in favour of euthanasia, he
also pointed to the need for a bulwark against the erosion of human values
that prohibit the deliberate taking of life. At the individual level, judge-
ments would become too complex, particularly in relation to the ques-
tion of whose interests were being served by euthanasia—​patient, friends,
relatives, or professional carers? Acknowledging these difficulties, Hinton
concluded his discussion on the subject by introducing the question of im-
proving care for the dying.

As long as we can truly say that for the patient merciful death has been too long in
coming, there is some justification for euthanasia. It seems a terrible indictment that
the main argument for euthanasia is that many suffer unduly because there is a lack
of preparation and provision for the total care of the dying.57

This, of course, begged many questions. Although some development in

ideas about terminal care was taking place in the late 1950s and early 1960s,
this was not being matched by any significant innovation in service delivery.
While The Lancet and British Medical Journal could endorse the importance
of research and even hint that a new approach might undermine the case for
voluntary euthanasia, no powerful medical lobby had sought to raise the pro-
file of terminal care within the NHS, or call for the implementation of the
kind of ideas set out in the Glyn Hughes report. Indeed, the overall provision
of any form of specific care aimed at the dying was still sparsely distributed
and remained in the hands of groups that were largely religious and charitable
in organization.

Change and continuity

Within the period in Britain between 1948 and 1967, it is possible to iden-
tify two sets of characteristics in thinking and practice relating to terminal
care. One emphasizes significant departures from previous discourses and
gives prominence to innovation and change. The other draws attention to
78

78 To Comfort Always

continuities with the foregoing period and indicates the persistence of ele-
ments from an earlier set of thinking about the care of the dying.
Four particular innovations can be identified, characterizing a new and dis-
tinctive disposition towards the care of the dying and constituting an emerg-
ing specialized focus within medicine and healthcare.
(1) A shift took place within the professional literature of care of the dying,
from idiosyncratic anecdote to at least the beginnings of systematic
observation. A series of studies made some claim to the collection of
evidence (through surveys, the collation of official statistics, case note
reviews, and patient interviews) about the social and clinical aspects
of dying in the context of the British National Health Service. In 1948,
the Physician in Ordinary to His Majesty the King could introduce a
medical symposium on death and dying with no more than a series of
anecdotes about the deathbed remarks of former prime ministers and
bishops. Yet, within 15 years, leading articles in The Lancet and British
Medical Journal were drawing on the evidence of recent research to sug-
gest ways in which terminal care might be promoted and arguments for
euthanasia might be countered.
(2) A new valorization of dying began to emerge that sought to foster con-
cepts of dignity and meaning. This transition is illustrated, for example,
in the shift from a discourse that sees the emotional relatives of a dying
person as awkward troublemakers to one where individual subjectivities
are acknowledged in ‘a philosophy concerning death which has helped
all of us to see death as an essential part of life and as life’s fulfilment’.58
Enormous scope was opened up for refining ideas about the dying process
and exploring the extent to which patients should and did know about
their terminal condition.
(3) An active rather than a passive approach to the care of the dying was
promoted with increasing vigour. Within this, the fatalistic resignation
of the doctor that ‘there is no more we can do’ was supplanted by the
determination to find new ways of doing everything. We see here not an
anti-​medical stance on death and dying; rather a response to perceptions
of the medical neglect of the dying, and potentially an expansion of med-
ical dominion.
(4) A growing recognition of the interdependency of mental and physical
distress created the potential for a more embodied notion of suffering,
later expressed most successfully in the concept of ‘total pain’. This con-
stituted a profound challenge to the body–​mind dualism, upon which so
much medical practice of the period was predicated.59
79

Change and continuit y 79

At the same time, two powerful continuities are in evidence that serve as
a bridge between earlier traditions and the emerging modern discourse of
terminal care. The first of these can be seen in the way both periods reveal
a sense of paternalism associated with the personality and influence of the
doctor. Thus, Hugh Barber, a contributor to the 1948 symposium, could ob-
serve, ‘It is a poor doctor who cannot find a thought suitable for the occa-
sion’,60 while Saunders could quote the patient who thanked her ‘not just for
your pills, but for your heart’.61 In each case, though expressed with different
degrees of subtlety, the personality of the doctor is construed as a therapeutic
instrument.
Secondly, the new thinking on terminal care drew directly on foregoing
ideas of religious care and solicitude, coupled with charitable endeavour. In
this sense, it reached back directly to some of the principles that had preceded
the British National Health Service and that the welfare state had sought to
usurp. This association with charity and voluntarism had a profound influ-
ence in turn in shaping the subsequent development of the modern hospice
movement.
We have been considering here a particular stage in the history of British
public policy. These were the golden years of postwar social democracy, the
principles of which are summarized by Anthony Giddens.62 Here we see the
pervasive involvement of the state in social and economic life, with an em-
phasis upon collectivism, demand management, the confined role of markets,
egalitarianism, modernization, and comprehensive welfare ‘from the cradle
to the grave’. Each of these elements, as it worked its way through the NHS,
helped to produce a particular model of healthcare organization. This was
one based on confidence in improvement, high levels of central planning, and
a suspicion of voluntarism. Moreover, it gave particular succour to a form
of medicine that emphasized cure and rehabilitation, which was becoming
increasingly heroic and hubristic in character. One aspect of this was medical
specialization where, as Geoffrey Rivett notes, the main growth was not in the
traditionally glamorous fields, but in ‘anaesthetics, radiology, pathology, psy-
chiatry, and later, geriatrics’.63 All of this had implications for terminal care.
Certainly, the goal of policy was to provide comprehensive welfare, free at
the point of delivery, to all who needed help. In practice, the early years of the
NHS were preoccupied with organizational matters, as the architect of the
plan, William Beveridge, ‘did not disclose how his airy assumption of a na-
tional health service could be implemented’.64 This problem fell to Bevan, who
displayed considerable skill in bringing the complex array of hospital provi-
sion under state control, and in remunerating general practitioners through
state capitation fees. But as costs exceeded predictions by as much as 40 per
80

80 To Comfort Always

cent in the first two years, severe strain was placed upon the budget of a nation
still in the throes of economic constraint. Accordingly, there was little new
hospital construction before 1995, while at the same time in ‘the first phase of
the NHS, despite formulaic expressions of good intention by ministers, it is
difficult to avoid the conclusion that general medical practice was treated by
the health departments as a receding backwater’.65 The inclusivist ambitions
of policy and the desire to provide care right to the grave were severely lim-
ited. In such circumstances, the priorities were acute care and rehabilitation.
Care at the very end of life occupied a much lower place in the pecking order.
Nor, as we have seen, was terminal care of much interest to those doctors
who were already in mid-​career when the NHS was founded. Rather, it was
the doctors who trained entirely in the postwar era that began to show a sub-
stantial interest in the issue: Cicely Saunders, John Hinton, Eric Wilkes, and
Colin Murray Parkes, in particular. From backgrounds in hospital and gen-
eral practice, in general medicine and psychiatry, these were the first individ-
uals in Britain to establish studies about an aspect of care that had previously
belonged in the realm of medical folklore. Loudon and Drury put it as follows
in writing about the history of general practice.

Unfortunately, we know little about the care of the dying in general practice before
the 1960s, except that it was shrouded in silence. Few talked about it, wrote about it,
or were taught anything about it as students.66

As they also note, terminal care as a branch of medicine requiring its own
training and skills was virtually unheard of before 1960.
This leads onto a fascinating legal case, which came to court in 1957, amid
a flurry of public interest and curiosity. It has been beautifully described and
contextualized in an article by Caitlin Mahar.67 On 18 March 1957, around
the time Cicely Saunders was preparing her first article for publication in
the St Thomas’s Gazette, the middle-​aged general practitioner John Bodkin
Adams, of Eastbourne in the south of England, was charged, and subse-
quently acquitted of the murder of an elderly patient, Edith Alice Morell. The
case is a landmark in the ethico-​legal literature, for in his summing up, Justice
(later Lord) Devlin took the view that it was lawful for a doctor to adminis-
ter pain-​relieving drugs, even though it was known that such a practice in
this instance would hasten death. For Mahar, however, the case has wider
ramifications of a historical nature. It reveals to us how at this time a branch
of medicine was emerging that had a legitimate role in the care of the dying,
where specific, what we might call proto-​specialist skills, were emerging. The
case was not simply an exercise in medico-​legal ethics, but served to frame
medicine’s role in relation to the dying person and, thereby, began to set in
81

Change and continuit y 81

train the medicalization of dying as well as to ‘draw back the veil’ on the prac-
tice of terminal care in this period.
David Armstrong has considered the notion of a silence being lifted from
dying and death and a new emergent discourse.68 He echoes the sense of grow-
ing medical jurisdiction over the deathbed at this time and is not convinced
by sociological commentators such as Geoffrey Gorer,69 Barney Glaser, and
Anselm Strauss,70 who wrote in the first half of the 1960s that death in modern
culture was emerging from the status of taboo into a new era of openness.
Rather he sees the new subjectivity of the dying person as an instrument of
power, rooted in medical interrogation and the compulsion to speak. Certainly,
the discourse of terminal care that began to consolidate in the early 1960s was
partly based upon the narratives of dying people who had participated in the
studies described in this chapter. That cohort of terminal care founders (pa-
tients and clinical researchers) did indeed open up a new discourse and began
to carve out a territory capable of specialist recognition. Yet, they did so de-
spite, rather than because of, the prevailing policy context. Attention to the
development of terminal care in the period 1948–​67, therefore, encourages us
to be cautious about viewing the postwar NHS as a modernist bureaucracy
dominated by technical reasoning. In the fissures between the new organiza-
tional structures of the health service and against a legacy of medical anec-
dote and paternalism on the care of the dying, a new field began to emerge. It
sought to rekindle charitable endeavour as a supplement to state provision; it
revived concerns with spiritual matters; and it commenced to carve out a field
of technical expertise based on research evidence. But it also strengthened a
transition to a new era in which the norms of medical practice came to be a
source of power and one in which the ability to administer powerful pain-​
relieving drugs, even in the knowledge that this would hasten death, became
legitimized. In the period from 1948 to 1967, terminal care under the NHS
had experienced a challenging beginning, which would make the expansionist
years that were to follow all the more remarkable. Yet, within the cracks of dis-
interest, seeds were germinating, and new practices were being explored that
would soon have a profound effect.

Notes
1. Klein R (1983). The Politics of the National Health Service. London, UK: Longman.
2. Harris J (1996). ‘Contract’ and ‘Citizenship’. In: Marquand D, Seldon A (eds.). The
Ideas That Shaped Post-​War Britain. London, UK: Fontana.
3. Webster C (1996). The Health Services since the War, Vol II; Government and Health
Care, the National Health Service 1958–​1979. London, UK: The Stationery Office.
82

82 To Comfort Always

4. Quoted in Abel-​Smith B (1964). The Hospitals 1800–​1948: A Study in Social

Administration in England and Wales, p. 481. London, UK: Heinemann; and Murphy
C (1989). From Friedenheim to hospice: A century of cancer hospitals. In: Granshaw
L, Porter R (eds.). The Hospital in History, p. 234. London, UK: Routledge.
5. Clark D (1998a). Originating a movement: Cicely Saunders and the development of
St Christopher’s Hospice, 1957–​67. Mortality, 3(1):43–​63; Clark D (1998b). An an-
notated bibliography of the publications of Cicely Saunders–​1. 1958–​67. Palliative
Medicine, 12(3):181–​93.
6. Joint National Cancer Survey Committee of the Marie Curie Memorial and
the Queen’s Institute of District Nursing (1952). Report on a National Survey
Concerning Patients with Cancer Nursed at Home. Chairman, Ronald Raven.
London, UK.
7. Glyn Hughes HL (1960). Peace at the Last. A Survey of Terminal Care in the United
Kingdom. London, UK: The Calouste Gulbenkian Foundation.
8. Gough-​Thomas J (1962). Day and night nursing for cancer patients. District Nursing
(November):174–​5.
9. Review of Glyn Hughes HL, Peace at the Last (1960). Lancet 275:195.
10. Horder L (1948). Signs and symptoms of impending death. Practitioner
161(962):73–​5.
11. Leak, WN (1948). The care of the dying. Practitioner 161(962):80–​7.
12. Hospice History Project: interview with John Berkeley by David Clark, 18 June 1997.
13. Summary of proceedings, British Medical Association Annual Meeting (1957).
Newcastle upon Tyne. British Medical Journal (3 August):286.
14. Grant I (1957). Care of the dying. British Medical Journal (28 December):1539–​40.
15. Hoyle C (1944). The care of the dying. Post-​Graduate Medical Journal, 20:119–​123.
16. Cole W (1956). Foreword. In: Schiffin MJ (ed.). The Management of Pain in Cancer.
Chicago, IL: Year Book.
17. Acker CJ (2002). Creating the American Junkie: Addiction Research in the Era of
Narcotic Control. Baltimore, MD: John Hopkins University Press.
18. Baszanger I (1998). Inventing Pain Medicine: From the Laboratory to the Clinic. New
Brunswick, NJ: Rutgers University Press.
19. Vere D (2004). In: Reynolds LA, Tansey EM (eds.). Wellcome Witnesses to Twentieth
Century Medicine, Vol. 21: Innovation in Pain Management, p. 15. London,
UK: Wellcome Trust Centre for the History of Medicine at UCL.
20. Meldrum ML (2003). The property of euphoria. In: Meldrum ML (ed.). Opioids and
Pain Relief: A Historical Perspective, pp. 193–​211. Seattle, WA: IASP Press.
21. Reynolds LA, Tansey EM (eds.) (2004). Wellcome Witnesses to Twentieth
Century Medicine, Vol. 21: Innovation in Pain Management, pp. 10–​11. London,
UK: Wellcome Trust Centre for the History of Medicine at UCL.
22. Euthanasia (1950). British Medical Journal (9 December):1318–​9.
23. Millard CK (1950). Euthanasia. Letter. British Medical Journal (23 December):1447.
24. Euthanasia (1961). Lancet (12 August):351–​2.
25. Exton-​Smith AN (1961). Terminal illness in the aged. Lancet (5 August):305–​8.
26. Worcester A (1935). The Care of the Aged, the Dying, and the Dead. Springfield,
IL: Thomas.
27. Saunders C (1958). Dying of cancer. St Thomas’s Hospital Gazette, 56(2):37–​47.
28. Saunders C (1959a). Care of the dying 1. The problem of euthanasia. Nursing Times
(9 October):960–​1. Saunders C (1959b). Care of the dying 2. Should a patient know …?
83

Change and continuit y 83

Nursing Times (16 October):994–​5. Saunders C (1959c). Care of the dying 3. Control
of pain in terminal cancer. Nursing Times (23 October):1031–​2. Saunders C (1959d).
Care of the dying 4. Mental distress in the dying. Nursing Times (30 October):1067–​9.
Saunders C (1959e). Care of the dying 5. The nursing of patients dying of cancer.
Nursing Times (6 November):1091–​2. Saunders C (1959f). Care of the dying 6. When a
patient is dying. Nursing Times (19 November):1129–​30.
29. Saunders C (1960a). Drug treatment of patients in the terminal stages of cancer.
Current Medicine and Drugs, 1, no. 1 (July):16–​28.
30. Saunders C (1967a). The care of the terminal stages of cancer. Annals of the Royal
College of Surgeons, 41 (Supplementary issue; Summer):162–​9.
31. Saunders C (1964a). The symptomatic treatment of incurable malignant disease.
Prescriber’s Journal, 4, no. 4 (October):68–​73.
32. Saunders C (1964b). The need for institutional care for the patient with advanced
cancer, Anniversary Volume. Cancer Institute, Madras:1–​8.
33. Cicely Saunders, letter to AN Exton-​Smith, 2 September 1960.
34. Seymour J, Clark D, Philp I (2001). Palliative care and geriatric medicine: Shared
concerns, shared challenges. [Editorial.] Palliative Medicine, 15:269–​70.
35. Hospice History Project: Cicely Saunders interview with David Clark, 2 May 2003.
36. Saunders C (1960b). The management of patients in the terminal stage. In: Raven R
(ed.). Cancer, vol. 6, pp. 403–​417. London, UK: Butterworth & Company.
37. Saunders C (1967b). The management of terminal illness. Part three: Mental distress
in the dying patient. British Journal of Hospital Medicine (February):433–​6.
38. Bailey M (1959). A survey of the social needs of patients with incurable lung cancer.
The Almoner, 11(10):379–​97.
39. Paterson R, Aitken-​Swan J (1954). Public opinion on cancer. Lancet, 267 (23
October):857– ​61.
40. Aitken-​Swan J, Paterson R (1955). The cancer patient: Delay in seeking advice.
British Medical Journal, 1 (12 March):623–​7.
41. Abrams R, Jameson G, Poehlman M, Snyder S (1945). Terminal care in cancer. New
England Journal of Medicine, 232(25):719–​24.
42. Abrams RD (1951). Social casework with cancer patients. Social Casework
(December):425–​32.
43. Brauer PH (1960). Should the patient be told the truth? Nursing Outlook, 8
(December):328–​33.
44. Bard M (1960). The psychologic impact of cancer. Illinois Medical Journal, 118(3):9–​14.
45. Lindemann E (1944). Symptomatology and the management of acute grief. American
Journal of Psychiatry, 101:141–​8; Aldrich CK (1963). The dying patient’s grief. Journal
of the American Medical Association, 184 (4 May):329–​31.
46. Parkes CM (1964). Recent bereavement as a cause of mental illness. British Journal of
Psychiatry, 110:198–​204.
47. Hospice History Project: Cicely Saunders interview with Neil Small, 7
November 1995.
48. Wilkes E (1964). Cancer outside hospital. Lancet, 1 (20 June):1379–​81.
49. Wilkes E (1965). Terminal cancer at home. Lancet, 1 (10 April):799–​801.
50. Hospice History Project: Eric Wilkes interview with David Clark, 13 October 1995.
51. Hinton J (1963). The physical and mental distress of the dying. Quarterly Journal of
Medicine, 32 (January):1–​20.
52. Osler W (1906). Science and Immortality. London, UK: Constable.
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84 To Comfort Always

53. Hospice History Project: John Hinton interview with David Clark, 25 April 1996.
54. Distress in dying (1963). British Medical Journal (17 August):400.
55. Saunders C (1963). Letter re: Distress in dying. British Medical Journal, 2 (21
September):746.
56. Millard M (1963). Letter re: Distress in dying. British Medical Journal, 2 (21
September):746.
57. Hinton J (1967). Dying, p. 148. Harmondsworth, UK: Penguin.
58. Saunders C (1965a). The last stages of life. American Journal of Nursing, 65(3):75.
59. Clark D (1999). ‘Total pain’, disciplinary power, and the body in the work of Cicely
Saunders, 1958–​1967. Social Science and Medicine, 49(6):727–​36.
60. Barber H (1948). The act of dying. Practitioner, 161 (August):76–​9.
61. Saunders C (1965b). Watch with me. Nursing Times, 61, no. 48 (26 November):1615–​7.
62. Giddens A (1998). The Third Way. Cambridge, UK: Polity Press.
63. Rivett G (1997). From Cradle to Grave: Fifty Years of the NHS, p. 10. London,
UK: King’s Fund.
64. Clarke P (1996). Hope and Glory: Britain 1900–​1990, p. 22. London, UK: Penguin.
65. Webster C (1998). The politics of general practice. In: Loudon I, Horder J, Webster C
(eds.). General Practice Under the National Health Service 1948–​1997, p. 22. Oxford,
UK: Clarendon Press.
66. Loudon I, Drury M (1998). Clinical care in general practice. In: Loudon I, Horder
J, Webster C (eds.). General Practice Under the National Health Service 1948–​1997,
p. 121. Oxford, UK: Clarendon Press.
67. Mahar C (2015). ‘Roy Porter student prize essay, 2012’—​Easing the passing: R vs
Adams and terminal care in postwar Britain. Social History of Medicine, 28:155–​71.
68. Armstrong D (1987). Silence and truth in death and dying. Social Science and
Medicine, 24(8):651–​7.
69. Gorer G (1965). Death, Grief, and Mourning in Contemporary Britain. London,
UK: Cresset Press.
70. Glaser B, Strauss A (1965). Awareness of Dying. Chicago, IL: Aldine.
85

Chapter 4

Cicely Saunders and her early

associates: A kaleidoscope
of effects

Figure 4.1 Florence Wald (1917–​2008)

Florence Wald was Dean of Nursing at Yale University in 1963 when
Cicely Saunders visited for the first time and delivered a lecture on the
care of the terminally ill. The two struck up a friendship, which was to
become deep and lasting. Wald and her associates went on to found
the first modern hospice in North America, in Conneticut, where its
work also helped pioneer the cause of Medicare funding for hospice
care in the United States, which came into force in the early 1980s.
Reproduced by kind permission of the Connecticut Women’s Hall
of Fame.
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86 To Comfort Always

Changes in the wider context

The first decade of the National Health Service (NHS) in Britain had seen almost
no traction in the development of state-​provided care for the terminally ill and
those with life-​limiting conditions. Most doctors who offered a public opinion
on the matter appeared rooted in a paternalist orientation to dying patients and
their families and were generally fatalistic about what could be done, other than
to make judicious use of morphine injections whenever possible. Where broader
thinking and action had occurred—​on matters of assessing need, formulating
a policy response, and developing new services—​these had all taken place out-
side the NHS and were spearheaded by charitable intervention and individually
motivated endeavours. There was some limited contact between a small number
of clinicians interested in these issues and, in a few cases, this extended to in-
ternational exchanges of ideas and publications, study visits, and symposia. By
the early 1960s some of this was consolidating. This chapter focuses on the spe-
cific contribution of Dr Cicely Saunders and her colleagues. It reveals how she
drew, in a syncretistic fashion and internationally, on a wide range of clinical,
religious, and cultural influences to formulate her particular approach to the
care of the dying. Its elements could then, in turn, be rotated, like the pieces in a
kaleidoscope, to produce differing results in different contexts. The end product
was always recognizable, whether called hospice or palliative care, but its precise
formulation could be a matter for local determination.

Working outwards from the homes for the dying

We have seen that in post-​World War II Britain there was an increasing like-
lihood for dying people to spend their final hours in hospital rather than at
home. At the same time, opinions varied on the form of institutional termi-
nal care that should be provided to an ageing population, and concern about
the experience of late-​stage cancer patients was growing. During these years,
small numbers of institutional homes were providing care for the dying, in
the main outside the NHS, and in each case drawing on older traditions of re-
ligious care or philanthropy. After 1948, most of these continued to function
in the shadow of the NHS. A few new developments had occurred in the im-
mediate pre-​and postwar period. In Scotland, the Irish Sisters of Charity had
opened another hospice in 1950—​St Margaret’s at Clydebank. In addition,
there were eight newly established Marie Curie residential cancer care homes,
which were partly, but not entirely, concerned with terminal care. Elsewhere,
in Birmingham the Taylor Memorial Home of Rest, first established in 1910
as a home for women with incurable internal malignancy, had been assimi-
lated into the NHS as part of the Dudley Road Group of Hospitals. The Tarner
87

Cicely Saunders —the person, the motivations, and St Christopher’s Hospice 87

Home had opened in Brighton in 1936 and concentrated mainly on those

close to the end of life.
These homes and hospices made up at best an incomplete patchwork. They
were not a comprehensive system of service provision, nor did they see them-
selves as centres for excellence in teaching or research. Their influence was
limited. Nevertheless, in some instances they had developed a cumulative
wisdom that could provide the context for innovation. At St Luke’s, for exam-
ple, ideas about giving analgesia on a regular basis to prevent the recurrence of
pain had become well established, and were described by the visiting physician
Dr J Cameron Morris in an article1 that appeared in the St Mary’s Hospital
Gazette in 1959. St Luke’s also played host to a special symposium on the care of
the dying held at St Mary’s Hospital Medical School in May 1961, at which the
responsibilities of the doctor (Dr P. Graeme), the almoner (H. Muras), and the
chaplain (Revd R. Yale) were considered2; this must count as one of the earli-
est multidisciplinary symposia of its kind. Similarly, under the leadership of
Sister Paula, the newly built (1957) Our Lady’s Wing at St Joseph’s, Hackney,
had begun to attract interest from medical students and other visitors who, like
Cicely Saunders, were impressed by the attention to individual care given there.
Every new patient is greeted by one of the Sisters: ‘You’re welcome, Mr X.’ He is
welcomed into a place that will be home rather than just another hospital … He is
welcomed by someone who is really interested in him as a person, in his soul and
in his mind as well as his body. His physical burden will be lifted and his individual
ways … will also be respected as far as possible.3

Despite the heavy emphasis upon charity and, in some instances, the idiosyn-
cratic use of country mansions in inaccessible places, the homes for the dying
made their contribution to the modern hospice movement that was soon to
follow. Although they appeared at odds with most of the principles of a modern
health service run on bureaucratic lines, these early homes nevertheless pro-
vided an enduring quality of self-​help and voluntarism, which came to be re-
worked in a new context. Certainly, their influence on the development of Cicely
Saunders’s thinking was extremely important. While training in medicine, she
visited and studied them. However, it was in a crucial seven-​year period (1958–​
1965) while working at St Joseph’s that she developed both her central clinical
ideas and her plans for the creation of a new form of institutional provision for
patients at the end of life—​plans that would prove massively consequential.4, 5

Cicely Saunders—​the person, the motivations,

and St Christopher’s Hospice
It is time to say more about the life of Cicely Saunders,6 a woman who by
the early 1960s was making a significant impact on discussions about care
88

88 To Comfort Always

of the dying in British medicine and healthcare. Cicely Saunders was born
in Barnet, Hertfordshire, on 22 June 1918, and at the age of 20 went to read
Politics, Philosophy, and Economics at Oxford University. Two years later, she
interrupted her academic studies to become a student nurse at the Nightingale
Training School at London’s St Thomas Hospital. When a back injury forced
her to leave nursing, she returned to Oxford, and qualified in 1944 with a dip-
loma in Public and Social Administration. She then commenced training as a
hospital almoner, or medical social worker.
In 1948 while at the London Hospital, she cared for a dying Jewish émigré,
David Tasma.7 In a matter of weeks, following regular visits by her to the hos-
pital, a profound bond developed between them. He had told her ‘I only want
what is in your mind and in your heart’, and they discussed the possibility
that one day she might found a special place more suited to those in his con-
dition. Their exchanges served as a fount of inspiration, and they later became
emblematic of Saunders’s wider philosophy of care, but beyond them lay a
great deal of further searching, both intellectual and spiritual. When he died
on 25 February 1948, Tasma left Saunders with a gift of £500 and the encour-
agement: ‘Let me be a window in your home.’
Afterwards, she became determined to learn more about the care of those
with a terminal illness. From the late 1940s, she worked at St Luke’s as a vol-
unteer, beginning to acquire knowledge of terminal care practice and draw-
ing on the writings of Dr Howard Barrett, who had been a dominant figure in
the work there until his death in 1921. In St Luke’s she saw demonstrated some
of the principles of pain relief, which she would later do much to promulgate.
She then made the important decision to study medicine, starting in 1952,
and qualifying in 1957 at the age of 38. In her final months as a medical stu-
dent she drew together a comprehensive paper on the care of the dying,8 de-
scribing four case studies of cancer patients with advanced disease, covering
their medical histories in the years 1950–​1956, and drawing on the experience
of working at St Luke’s, as well as visits to other London terminal care homes.
The paper included sections on general management, nursing, the terminal
stage, and pain. She also explored the value of special homes for terminally ill
patients, refuting the notion that these are ‘dismal and depressing places’ and
arguing for the importance of specialist experience in such areas as pain, fun-
gating and eroding growths, mental distress, fear, and resentment. She wrote
about the importance of telling the patient and relatives about the diagnosis
and prognosis, and about the spiritual care of the patient and family.
In 1958, with funding from the Sir Halley Stewart Trust, Saunders was
able to focus exclusively in this area and took up a position as research fellow
at St Mary’s School of Medicine, conducting work at St Joseph’s Hospice in
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Formul ating the idea 89

Hackney, in the new hospital wing. It was here between 1958 and 1965 that
Cicely Saunders taught herself as much as she could about the little-​explored
field of terminal care, and over time built up a nascent network of inter-
national contacts. She also formed her key ideas and specific clinical practice,
laying down what were to become the fundamentals of modern hospice care.
In particular, she became interested in the regular giving of analgesics and
was attracted to the pain-​relieving mixtures that were in use in London at
that time. She also became fascinated by the relative merits of morphine and
diamorphine for pain control, and her knowledge of new approaches emanat-
ing from the growing field of pain medicine steadily increased.9
At St Joseph’s, she had an opportunity to put these ideas into practice and to
develop a wider view of pain in the context of the whole person’s suffering. Here
she experienced a culture of religious solicitude that fostered her belief in the
dignity of dying and the care of both body and soul. She also began teaching
and, crucially, formulated her ideas about how all of this could be translated into
a modern context with the potential for wider influence. She resolved to establish
her own hospice, built for the purpose and founded on what she had learned
from the London homes for the dying, and others she had studied at a distance.

Formulating the idea

By the end of the 1950s, Saunders was well established in the intention of
dedicating the rest of her life to developing a modern approach to the care
of the dying. She viewed this work as a matter of personal calling. She had
studied medicine as a third profession, specifically to do something about
the problem of pain in patients dying of cancer. In 1959, she was 40 years old,
unmarried, and a committed Christian whose evangelical orientation was be-
ginning to broaden. She had gained experience in the care of the dying as a
nurse, social worker, volunteer, and researcher. However, at this time she was
still seeking to clarify her initial ideas, striving to create a programme for
action, and working hard to realize her vision.4
Crucial to this process was the question of the religious and spiritual foun-
dation of the institution she was to establish. The issue had come early onto
the agenda, after she had first raised it in 1959 while on a personal retreat at
the Mother House of the Church of England, order of St Mary the Virgin, at
Wantage, Berkshire. Subsequently, as she assembled around her a group of
friends and associates who might help in her quest to found a new home for
dying people, she quizzed them in turn on the question of religious priori-
ties. Throughout the early part of 1960, there were numerous meetings, and
extended correspondence with a clutch of evangelically inclined Anglican
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90 To Comfort Always

friends. By the end of the year, enough clarity had emerged that was sufficient
to take the project forward. Though the protagonists were likely unaware of
it, their deliberations were also to have a profound influence upon the later
development of what became known as the hospice movement.
The first clear evidence of Cicely Saunders’s strategic intentions about the
formation of a new type of hospice came in the second half of 1959, when
over the space of a few months she circulated a 10-​page document to several
associates, seeking their reaction. Entitled The Scheme, it set out de novo the
structure and organization of a modern terminal care home containing 60
beds, together with staffing levels, capital and revenue costs, and contractual
arrangements. By the end of the year, the ‘home’ in question had a name: St
Christopher’s Hospice. In this place, the patron saint of travellers would thus
accompany those making their final earthly journey. Soon, a small but enthu-
siastic group of supporters had formed, including Dr Glyn Hughes, author
of the recent report on the state of terminal care in Britain; Betty Read, head
almoner at St Thomas’s Hospital; and Jack Wallace, an evangelical friend
and lawyer. The group was soon joined by Evered Lunt, Anglican bishop of
Stepney; Sir Kenneth Grubb of the Church Missionary Society; and, very sig-
nificantly, Dame Albertine Winner, deputy chief medical officer. Led by their
enthusiasm, and the inspiration and energy of Cicely Saunders herself, they
set about raising funds to bring the enterprise to realization.
Shirley du Boulay,10 in her biography of Cicely Saunders, correctly argues
that it was the connection with Dr Olive Wyon, then a retired theologian
living in Cambridge, which did much to clarify a major issue that Cicely
Saunders was grappling with at this time—​t he precise character of the pro-
posed venture as a community and, in particular, the relationship between
its religious orientation and medical practice. Among Olive Wyon’s interests
were the new religious movements and communities that had developed after
World War II across Western Europe,11 and it was her knowledge of these new
waves of religious development that was to prove so helpful. Cicely Saunders
first wrote to Olive Wyon on 4 March 1960 at the suggestion of Sister Penelope
at Wantage. Her letter set out some of the background.
The problem about which I wrote to Sister Penelope, is the question of the
‘Community’ which some people seem to see envisaged in my plan. I am tremen-
dously impressed by the love and care with which the Irish Sisters give to our
patients—​something more than an ordinary group of professional women could
ever give, I think. But I was not really thinking of anything nearly so definite as
a real new Community, I think I was using the term in a much less technical way.
I asked Sister Penelope if I was attempting the impossible to hope that a secular
group of people without any kind of rule would be able to hold together and give
the feeling of security, which I want so much to help our patients … So I am really
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Formul ating the idea 91

faced with two problems. On the spiritual side, I know that the spiritual work is of
paramount importance and while it goes hand in hand all the time with our medical
work, it is the only lasting help that we can give to our people … I feel that the work
should be a definitely Church of England one rather than interdenominational and
that it must be widely based in the Church, and not just in one wing. Then the other
problem is this question of a Community of those who work there. I think myself
that this matter should be held in abeyance; I may have adumbrated it in my scheme,
but I had not been thinking of going any further than pray for the right people to
come, and wait for the leading of the Spirit should He want us to draw together more
definitely.12

In just over a week, Cicely Saunders had visited Olive Wyon, and came away
feeling supported. She had been encouraged to make contact with the Sisters
of Commaunaté at Grandchamp in Switzerland, and she wrote soon after-
wards to the foundress, Sister Genéviève, who replied with information about
the community and an invitation to attend a retreat in the summer. Her re-
lationship with Grandchamp is an interesting one, but it does not seem to
have strengthened Saunders’s convictions about establishing her hospice as a
form of new religious community. Initial attempts to make a connection with
Grandchamp were surrounded with difficulties. In July 1960, a visit was post-
poned as she felt unable to leave Antoni Michniewicz, a patient for whom she
had been caring over the past seven months at St Joseph’s Hospice and who
was now nearing death. In June of the following year, despite hesitation due
to her father being unwell, it was possible to make a retreat there, but during
this visit, she received the news that her father had died. Nevertheless, her
links with the sisters at Grandchamp, who undertook to offer prayers for St
Christopher’s, continued for many years thereafter.
However, in 1960, two issues required resolution. The first was dealt with
straightforwardly. The second remained unclear, and continued to be so, even
as St Christopher’s moved towards its opening day. First was the question of
the precise religious character of the hospice. The debate was initially about
in which theological wing of the Church of England the hospice should be
located, but quickly ecumenical ideas and the influence of wider discussions
about Christian unity became apparent. This was the extent of interfaith con-
siderations; Britain in these years was still some way from addressing mul-
ticultural issues, and the question of non-​Christian religions was not given
any acknowledgement. That would come later. To a considerable extent, the
issue was resolved pragmatically; a major source of charitable funds, the
City Parochial Foundation, was showing an interest in the project, but the
Foundation was unable under its terms of trust to give to a purely Anglican
venture. As Saunders noted in a letter to her brother on 30 August 1960, ‘I
very much prefer something that is “inter” rather than “un-​” ’,13 referring
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92 To Comfort Always

here to the question of the denominational character of St Christopher’s.

Betty West, the mother of a friend from medical school, had captured this
sentiment months earlier in a letter encouraging her not to be too dismayed
by the apparent diversity of Christian influences that were helping to form
St Christopher’s: ‘Could it be do you think, that in heaven our ways don’t
seem quite so different as they appear to us—​and who knows that the edges
might well melt away or not matter so much.’14 By the end of 1960, the issue
was settled and Cicely Saunders wrote the following to Olive Wyon on 6
December 1960:
We have decided that it shall be an interdenominational foundation, although we
will have something in the documents stating as firmly as possible that it must
be carried out as a Christian work as well as a medical one … I found that I just
couldn’t think it was right to be exclusive. First of all, I could not be exclusively
evangelical and thought that perhaps it would therefore have to be Anglican to keep
it safe from heresy or secularisation. But then it didn’t seem right to be that either,
and in our legal Memorandum stands the statement: ‘there shall be a chapel avail-
able for Christian worship’, and I do not think that really we could be much broader
than that!15

For the second question however, which was that of St Christopher’s as some
form of community, no such categorical statement appeared. Indeed, there
was a sense that this issue remained something to be explored and later en-
countered, even as the work of the hospice got under way. Whereas on the
question of denominational identity, Saunders had felt that her supporters
and collaborators were taking a broader view than her own, on this second
issue it was as if they constrained her from the possibility of a more strongly
communal orientation. The almoner Rosetta Burch expressed this clearly in
a letter of 16 June 1960:
To the outside world you must be first and foremost a medical concern … You are
a Christian doctor not a spiritual leader with a medical vision. You have lots of ex-
perience of working with others on a professional basis but God has never given you
the experience of being a member of a Community. Don’t you think he would if that
were to loom large in his plan?16

So it was that Cicely Saunders was able to write to Olive Wyon at the end of
1960 that ‘it does not seem to have been right to think much more along the
lines of a Community for this Home at the moment. I think that if we are to be
drawn together in this work, that it will happen when we get there’.15
It is now clear that 1960 was an intensely formative year for Cicely Saunders.
It was a year of deep reflection and consultation with others on the precise
nature of her vision for St Christopher’s Hospice. It was also the year in which
the death of one particular patient, Antoni Michniewicz, created in her a
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Formul ating the idea 93

powerful and abiding sense of loss for a relationship that never came to frui-
tion, yet at the same time made her feel that she was capable of giving a true
authenticity and imperative to her subsequent work.10 The issues that she had
explored at such length with her friends and associates during that year would
continue to tax her imagination and energy, but a clear and pragmatic turn
had occurred, which enabled the purposes of St Christopher’s to be explained
succinctly to the wider public, including potential donors.
A few years later the supporters of St Christopher’s, who had been meeting
since 1962 under the guidance of the bishop of Stepney (in what they called ‘a
community of the unalike’), sought to clarify and set down in a statement the
basic principles of their work. It was at one of these meetings in June 1964 that
Olive Wyon ‘made an excellent digest of my woolly thoughts’, Cicely Saunders
later wrote in a letter to Wyon.17 The result was a document entitled Aim and
Basis that was to have currency at the hospice for many years in the future.18
Within it, St Christopher’s Hospice is defined as a religious foundation based
on the full Christian faith in God, with five listed underlying convictions.
1. All persons who serve in the hospice will give their own contribution in
their own way
2. Dying people must find peace and be found by God, without being sub-
jected to special pressures
3. ‘Love is the way through’, given in care, thoughtfulness, prayer, and silence
4. Such service must be group work, led by the Holy Spirit, perhaps in
unexpected ways
5. The foundation must give patients a sense of security and support, which
will come through a faith radiating out from the chapel into every aspect
of the corporate life
The Aim and Basis provided St Christopher’s with a statement of its under-
pinning motivation, which was reviewed from time to time in later years. The
discussions that preceded it, however, were to shape the work of the hospice
for many years to come. They reveal a profound sense of purpose coupled with
a rigorous approach to debate and discussion, which were essential in estab-
lishing the dominant themes in the world’s first modern hospice.
Nevertheless, other energies were also required at this time. Saunders was
starting to receive visitors at St Joseph’s and some of these developed into
wider connections and networks. One chilly day in November 1960, she re-
ceived a visit from Dr K. J. Rustomjee, of Colombo, Ceylon. He had arrived
at St Joseph’s Hospice in Hackney, eager to meet the enthusiastic doctor who
had been working there for the past three years improving her understanding
of terminal care, and also attracting attention for her publications in Nursing
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94 To Comfort Always

Times19 and a substantial chapter in Ronald Raven’s recent six-​volume edition

on Cancer.20 The two bonded immediately and soon ‘Rusty’ and she were in
regular contact by airmail. A prodigious worker, he had done much to cham-
pion the need for cancer care in Ceylon. His interests spanned the entire spec-
trum, from disease prevention, to treatment and terminal care. In particular,
Dr Rustomjee harboured his own ambition to establish a terminal care home
in Colombo. Some years before, the Ceylon Cancer Society, of which he was
president, had pledged to the then Prime Minister S. W. R. D. Banderanaike
that the Society would establish such a home for the shelter, comfort, and
peace of terminal cancer patients. By the time he and Cicely met in 1960,
plans were well advanced, and by early 1961, an elephant was deployed to
clear the site in preparation for building.
In their correspondence, Saunders and Rustomjee exchanged news and up-
dates on their parallel projects. While her letters were carefully typed by her
secretary of the time, Jenny Powley, his were handwritten. Hers were quite
formal, his less so. Nevertheless, they did exchange pleasantries about the
weather, bouts of illness, and events of the day. Over the years, she updated
him on the fundraising work for St Christopher’s and the successes and dis-
appointments along the way. She also supplied him with a steady stream of
reprints of her publications from the period.
At the same time, he shared with her the details of the home being built in
Ceylon, its facilities, and how it was to be staffed. He then sent a full album of
photographs depicting the opening ceremony, of 19 November 1962, with its
ritual lamp-​lighting and Buddhist ceremonial paraphernalia. Dr Rustomjee
had many connections. When he visited St Joseph’s in 1960, he was en route
to Ceylon from the United States where he had undertaken a wide-​ranging
tour of organizations and facilities engaged in cancer care. On this same
visit, he had also attended the Fourth National Cancer Conference, which
had taken place over three days in September at the University of Minnesota,
Minneapolis. He wrote up the whole experience in a report sent to Cicely
Saunders in February of the following year. When in summer 1962, she
contemplated making a similar visit, he was quick to step in and make the
necessary introductions. These included a connection to Mildred Allen at
the American Cancer Society, as well as to the Home of our Lady of Good
Counsel in Minnesota. The following year Cicely Saunders headed to the
States herself, followed in his footsteps for part of the way and, on concluding
her trip, she did as her friend by preparing a detailed report that she could
pass on to others. Her connection with the American Cancer Society was to
be long lasting and beneficial.
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Formul ating the idea 95

By the time Cicely Saunders met with Dr Rustomjee, she was already ac-
tively engaged in communicating her ideas to those who had the material
wherewithal to turn them into reality.4 By early 1961, there were architectural
drawings of the hospice and an estimated cost of £376 000, although in the
inflationary environment of the times the architect warned that prices were
rising daily. By 1966, with building well underway at the chosen location in
Sydenham and the project budget now estimated in excess of £400 000, there
was still a considerable shortfall in funds and the national financial climate
was not favourable. By early 1967, the overall budget stood at £480 000; but by
June a team of staff had been appointed, the building commissioned, and the
first patients were beginning to arrive. By opening day, 24 July 1967, all debts
had been cleared.
There was also a growing critical mass of friends, acquaintances, support-
ers, and colleagues gravitating around the hospice founder and her ideals. Dr
Mary Baines is a good example. She had been at medical school with Cicely
Saunders, as had Tom West and Gillian Ford, who also became closely in-
volved with St Christopher’s. Baines and Saunders were active in the Christian
Union, but after graduation they lost touch with each other. Mary Baines re-
calls how they were reconnected.
I’ll never forget this … it was in 1964 and I was just at home, I think it was a Sunday
evening, Ted [her husband] was out and by chance, I turned on the radio, and there
was my old friend Cicely Saunders, whom I’d lost touch with since medical student
days. And she was giving This Week’s Good Cause appeal on behalf of the hospice she
was going to found. And I sent her three pounds, which was a lot of money then, and
especially for an impecunious clergy wife and became a ‘Friend of St Christopher’s’.
And then a really extraordinary thing happened really, in that Ted was invited to
become a vicar in Beckenham, which is three miles from here. This was in April ‘67.
So we moved up to this area before St Christopher’s was opened. And before coming
up, I had arranged, and gained, another part-​time GP job in Norwood, which is not
very far from here. I then came to the opening of St Christopher’s in July ‘67 and at
that time met up with Cicely again. And she sent me a letter which I’ve got a copy of,
saying, and it was a very clever letter, and I’ve laughed about it with her many times,
saying that as I was a local general practitioner, and would be sending patients to
St Christopher’s, would I like to come round one afternoon and have a private look
round with her? And of course it was a great big hook. And I fell for this. So I guess
it would have been somewhere, August/​September, that sort of time, that I came,
and she then asked me whether I would like to join her at St Christopher’s … And
I didn’t think I wanted to work with the dying, and all sorts of very good reasons,
because it was a very unusual thing. And I sent this letter to her, and even suggested
the name of a friend of mine who might be interested in the job, as I patently wasn’t!
But then we thought it over, and prayed it over, and talked it over, and it did seem
the right thing to do … And joined here in April ‘68. So that’s how it happened.21
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96 To Comfort Always

An article published in The British Hospital Journal and Social Service Review
soon after the opening amounts to a prospectus for St Christopher’s. The hos-
pice ‘will try to fill the gap that exists in both research and teaching concern-
ing the care of patients dying of cancer and those needing skilled relief in
other long-​term illnesses and their relatives’.22 On opening, the hospice con-
tained 54 inpatient beds, an outpatient clinic, and also 16 beds available for
the long-​term needs of staff and their families. There would be an emphasis
on providing continuity of care for those able to return home and there were
plans for a domiciliary service. Relatives’ involvement in care would be en-
couraged. Research on pain, developed at St Joseph’s, would be extended. The
hospice was to be ‘a religious foundation of very open character’, and there
was a sense that the whole endeavour amounted to an elaborate pilot scheme,
which could have extremely far-​reaching implications.
Indeed, Cicely Saunders and others around her, even before the opening of
St Christopher’s, had an intuition that this was a project far greater than build-
ing a single new hospice, taxing though that may have proved. Colleagues
wrote from America urging her to realize that she had two obligations: one, to
develop the work of her own organization, and the other to spread her learn-
ing further afield. Therefore, the practical accomplishment was about more
than St Christopher’s Hospice alone. Links had already been established with
a wide range of hospitals and nursing and theological colleges, and there were
plans for exchange visits with colleagues in Yale, Harvard, and other cen-
tres in the United States. Within a few years, voluntary, independent terminal
care services would proliferate, and the modern hospice ‘project’ would have
a growing influence on policy and practice. A nascent movement4 was under
way, the starting point of which, most marked in the British context, was out-
side rather than within the formal healthcare system. For this movement to
flourish and grow, it would need Cicely Saunders to apply enormous levels of
personal energy, commitment, and resilience.

Three visits to the United States: 1963, 1965,

and 1966
A striking feature of Cicely Saunders’s practice during the formative years
of St Christopher’s was the way in which she forged links with and drew
strength from colleagues in America. She made three key visits in the 1960s
that yielded a huge amount in terms of knowledge, insight, and collaboration.
The first, in the spring of 1963, was a tour de force, covering the East and West
Coasts and making connections with individuals from a variety of disciplines
who would become influential in forging modern ideas about ‘hospice care’
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Three visits to the United States: 1963, 1965, and 1966 97

across the United States. Afterwards she compiled a detailed report of her ex-
periences and went to considerable trouble to send copies to many people she
had met. Indeed, she soon ran out of copies, as demand outstripped supply,
and she underestimated the level of interest her report would attract. Three of
those who she encountered on the trip were asked to become vice presidents
of St Christopher’s Hospice. The first was Professor Gordon Allport, a con-
tact made through her brother, Christopher, who was chair of psychology at
Harvard University and executive secretary of the Ella Lyman Cabot Trust,
which supported the visit to the United States. Second was Theodate Soule,
who was a consultant to the Hospital Social Service Fund in New York; and
third was the Revd Almon Pepper, director of the department of Christian
Social Relations at the Protestant Episcopal Church in New York, who sub-
sequently attended the laying of the foundation stone for St Christopher’s
in 1965.
For a lone Englishwoman who had never before travelled to the United
States—​a country at that time in considerable foment over civil rights and
international relations issues—​it was a remarkable tour, lasting eight weeks.
Taking in New York, Yale, Boston, Washington DC, Los Angeles, San
Francisco, and Vancouver, she visited 18 different hospitals of varying types,
as well as the National Institutes of Health in Maryland. Along the way, she
met with doctors, psychiatrists, nurses, social workers, social scientists, and
hospital chaplains. As she noted in the introduction to her report, ‘I found
it a great asset that I was able to go in my threefold capacity of nurse, social
worker, and doctor. It made my own approach a broad one and also made me
“one of them” when I discussed problems with each of the different profes-
sions’.23 There are sections in the report dealing with pain in terminal cancer;
the mental pain and distress of dying patients; relatives and their problems;
homecare programmes; nursing homes; and the work of chaplains.
Several of those she met on this visit became long-​standing colleagues and
friends, and over time, an elaborate network of individuals concerned with
the care of the dying began to develop. In the early 1960s, letter writing was
their main means of communication, coupled frequently with an enthusiastic
exchange of reprints from recent publications. In these years, Cicely Saunders
was a prolific letter writer and her correspondence gives remarkable insight
into the energy with which she pursued her links with the United States and
the benefits that flowed from them. Her personal papers contain no less than
15 archive boxes of correspondence with US colleagues, much of it covering
the period up to 1967.24
Regular correspondents on the US West Coast were Dr Herman Feifel, chief
psychologist at the Veterans Administration in Los Angeles and author of key
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98 To Comfort Always

early work on aspects of death and dying,25 as well as Esther Lucille Brown, a
social anthropologist working with the Russell Sage Foundation. Brown was
a frequent source of letters and ideas, with specific interests in improving the
quality of nursing care. On the East Coast, Florence Wald (Figure 4.1), then
dean of nursing at Yale; Professor Gordon Allport; and Carleton Sweetser,
chaplain at Memorial Hospital, New York, all became close colleagues.
The link with Yale was to be particularly significant. Cicely Saunders’s first
visit had been at the invitation of Dr Bernard Lytton, a former surgeon at the
London Hospital, from where he had visited St Joseph’s Hospice once a week.
On moving to Yale and learning of her planned visit to the United States, he
invited his friend to lecture at the university. At Yale, she spoke first to the stu-
dent council in the school of medicine and then, by special request, repeated
the talk the following day to the faculty of postgraduate nursing. It was at the
second lecture that she met Florence Wald, who remarked afterwards, ‘this is
what we have lost, and this is what we need’.23 Florence Wald explains:
Virginia Henderson was doing an annotated index of all the nursing literature from
the 1900s. Everything that was written in English, and so when she saw the name
Cicely Saunders she knew what she was doing. I knew nothing about her at all and
she said, ‘Well you must go and hear her.’ And I said, ‘Well, I’m stuck because I’m
supposed to be introducing the speaker at another forum and I don’t feel as if I can
get out of that.’ So she said, ‘Well, I’ll go and I’ll report back to you,’ which she did
and just said, you know: ‘We’ve got to get this woman to speak.’ She was talking
about how she’s taken care of the dying patients, and our faculty and our students
were struggling very much with the intensive treatment that was going on and on
for patients and how they were debilitated by this and the … inability to stop using
those kinds of therapeutics. And so I immediately got in touch with Bernie Lytton
and Cicely agreed to meet our students in faculty the next day, and I gathered as
many people from the hospital as I could in the departments of social work and so
forth, and she did the same presentation. And of course it just ‘wowed’ us. And then
you have to realise that in that same month in May 1963 that’s when the marches of
Martin Luther King began in Selma … and Alabama. And it was in that summer
that doctors and nurses also began to join in the fight against segregation. So that,
you know, it found us at a time when the kinds of things that we were suffering, there
suddenly seemed to be a way to move.26

As Joy Buck, the historian of American nursing, has noted, Wald was at a
critical point in her own life in 1963. She was an advocate for major reforms in
nursing education and the clinical role of the nurse and, like Cicely Saunders,
believed that professional nurses should eschew non-​nursing tasks to give
more focus to care at the bedside. She was also deeply sceptical of the drive
within medicine to prioritize technology and cure over an emphasis on care
of the person. Wald believed the hospice concept offered the perfect vehicle
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Three visits to the United States: 1963, 1965, and 1966 99

by which she and other reformers could achieve a ‘brave new world’ in health-
care with nursing and medicine working together as equals at the helm.27
Saunders’s second visit to the United States began in May 1965 in New York
with a lecture at the Postgraduate Center for Mental Health, followed by
speaking engagements at Yale, and meetings at the Massachusetts General
Hospital with Professor Lindemann, a psychiatrist and an early bereavement
researcher who developed the concept of anticipatory grief. On this occasion,
as before, financial assistance from the Ella Lyman Cabot Trust was made
available, mediated through the good offices of Gordon Allport. Saunders
observed to Esther Lucille Brown: ‘I cannot be too grateful to them, for not
only did they help me very substantially on my last trip but they also sent
me a most generous gift as “seed money” for St Christopher’s. I am most un-
deservedly fortunate in the people who support us.’28 In the case of Gordon
Allport, there was also an emotional and intellectual debt, for it was he who
in 1963 had first introduced her to the writings of the Austrian psychiatrist
and concentration camp survivor Viktor Frankl, in particular Man’s Search
for Meaning,29 which was to prove very influential upon her thinking in the
coming years.
American colleagues also proved to be useful sounding boards about events
and developments taking place back in London. After writing to Esther
Lucille Brown about leaving St Joseph’s in the autumn of 1965, her friend
wrote back: ‘It must have been a wrench to leave St Joseph’s after seven years
there. I believe, however, that this is a most auspicious moment for you to
sever ties and prepare yourself psychologically for initiating your new pro-
gram in your own new hospital.’30 On another occasion when the finances
of St Christopher’s had taken an upturn, Brown wrote: ‘Isn’t it marvellous
how financial sustenance at this very trying moment has been coming to your
rescue. I do hope that it will continue …’31
Regular correspondents all received the newsletter, which contained details
of the development of St Christopher’s; this was clearly an important chan-
nel of communication and often featured in the exchange of information and
the words of encouragement that were such a feature of the letters to and
from Saunders’s American colleagues. Perhaps resulting from the cultural
disposition of the Americans with whom she made contact, there was a ten-
dency for her to receive greater recognition of the wider import of her work
from across the Atlantic than she found at home. In due course, the UK–​US
traffic became two-​way, with American visitors arriving in London to visit
St Joseph’s and the still-​to-​be-​opened St Christopher’s with increasing regu-
larity. Anselm Strauss, for example, a San Francisco-​based sociologist and
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100 To Comfort Always

pioneering researcher on awareness contexts in dying,32 visited her in the

autumn of 1965 and many others followed.
Saunders’s third sojourn to North America began in April 1966 with six
weeks at Yale, before moving on to Cleveland and then Vancouver. She began
her lecture at the Yale School of Nursing as follows.
This is the third time I’ve been at Yale, and like St Thomas’s Hospital, I think you
must begin to feel that every time you get rid of me, I come back in another capacity.
This time I’ve chosen the title, ‘The Moment of Truth’, not because I just want to dis-
cuss the perennial question, ‘Should you tell the dying patient the truth?’ (which is
not really the right question anyway), but because meeting dying patients and facing
the fact of death does concern all of us, whether we’re nurses, doctors, social workers,
psychologists, or of any other discipline; I think perhaps almost most of all, when
we’re just members of the family. This moment is, or should be, a moment of truth,
not just a matter of words, who says what and when, but something much more deep
and far-​reaching than that in its implications, implications which, I think, are rele-
vant to the whole of life.33

While at Yale, Saunders also met with two major figures in the emerging
psychiatry of dying and bereavement: Elisabeth Kübler-​Ross, who was vis-
iting from Chicago; and Dr Colin Murray Parkes (with whom she had al-
ready become acquainted in London), who was spending a year in Harvard.
Their first encounter brought together a remarkable triad of names that were
to become synonymous with the modern care of the dying and bereaved.
Kübler-​Ross was at that time working as a psychiatrist at the Billings Hospital
and University of Chicago, where she had begun to embark on a series of im-
portant and widely acclaimed works on death and dying.34 Parkes was later to
work closely with Saunders at St Christopher’s, where he brought his psychi-
atric perspective not only to the care of patients and families, and to research,
but also to the support of the staff. Speaking in 1996, he recalls some of the
early contacts in the field.
It must have been about 1964 I made my first visit to America. I was lecturing on be-
reavement at Billings Hospital in Chicago where I’d been invited by Knight Aldrich
who was the Professor of Psychiatry there. And he said, ‘Well, I’ve got an interesting
trainee, a junior psychiatrist working here on the subject of psychological reactions
to terminal illness.’ And he introduced me to this lady, Elizabeth Kübler-​Ross, and
I actually sat behind a one-​way vision screen and watched her interviewing patients.
She was collecting information for what was subsequently her book, On Death and
Dying it was called, in which she described the stages of dying.35

Cicely Saunders continued her frequent visits to Yale, and in June 1969,
she was awarded the degree of Doctor of Science from the university. Her
friendship with Florence Wald was also to grow and thrive over many years,
particularly as developments for America’s first hospice, in New Haven, got
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Publications in the United States 101

underway. Likewise, Colin Murray Parkes got involved with St Christopher’s

from the outset and became a lifelong colleague.

Publications in the United States

In February 1964, Cicely Saunders received an invitation from the Episcopal
Church Center in New York to write for The Living Church, an American jour-
nal, on the topic of ‘Facing death’. The theme of the article36 was the denial
of death, and in it Saunders suggested that acceptance of one’s mortality was
a route to finding meaning in life itself. She described the case of a young
woman, about to die, who wanted to assist her children and husband through
the process, and the reactions of the staff. The paper rejected the apparently
‘swift and easy’ solution of euthanasia in these cases and suggested that reli-
gious peace may come to dying people in such circumstances, even those who
seem most indifferent and recalcitrant before the end.
Inspired by this, Dorothy Nayer, associate editor of the American Journal
of Nursing, then wrote to Cicely Saunders requesting an article that would
help readers come to terms with their attitudes about death and assist them
in their service to dying patients and their families. Characteristically, a
detailed correspondence ensued. Saunders checked on various themes that
might be explored in the article, discussed the use of illustrations, and asked
for advance copies of two papers by Anselm Strauss that were to appear in the
journal at a later date. The editor was delighted with the result. Illustrated by
impressive line drawings, the article37 took as its theme the idea that the last
stages of life should not be seen as defeat, but rather as life’s fulfilment. Using
case illustrations from St Joseph’s Hospice (although the name appeared in-
correctly in the text), it focused on the nursing aspects of care, especially the
responsibility of telling or not telling the patient about the prognosis. Readers
were as enthusiastic as the editor, and nurses from around the country wrote
in with their endorsement. Typically, each received an individual and de-
tailed reply from Saunders. Her association with this publication continued,
and in December 1971 the journal ran a special feature on ‘Christmas at St
Christopher’s’; indeed, some of those who had read the original article in 1965
were still writing in with requests to visit the hospice many years later.
The third American publication for which Cicely Saunders wrote in the
decade before St Christopher’s Hospice opened was the journal Geriatrics.
This took the form of an extended letter, produced by invitation.38 In it she
gave details of the developing plans for St Christopher’s and the goal of
making an impact on the lack of interest in research, teaching, and care relat-
ing to the dying. It emphasized the concept of a ‘hospice’ as a resting place for
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102 To Comfort Always

travellers and pilgrims, something between a home and a hospital, and also
noted that the project had already established international links, particularly
with the United States.
By late 1965, Saunders’s reputation in the United States was growing rap-
idly. Media attention followed, along with requests for her help and guidance,
as well as for her to speak at meetings and write for other publications. In
May 1966, she took part in a series of lectures at Western Reserve University
in Cleveland, Ohio (later published39), titling her talk ‘The Moment of
Truth: Care of the Dying Person’. The other lecturers included Lawrence
Leshan (‘Psychotherapy with the Dying Patient’); Anselm Strauss (‘Awareness
of Dying’); Robert Kastenbaum (‘Psychological Death’); and Richard Kalish
(‘The Dying Person: Impact on Family Dynamics’).
By autumn 1966, there was a sense of an emerging critical mass of interest
not only in her work, but also in the wider field to which she was contribut-
ing. By now, what Robert Kastenbaum referred to as ‘our little death newslet-
ter’40 had evolved into the journal Omega, and was reproducing her article ‘A
medical director’s view’, which had appeared first in the journal Psychiatric
Opinion.41 These early publications in the United States spanned several key
disciplines and audiences: the church, nursing, medicine, and psychiatry.
America was learning about the work of Cicely Saunders and she was learn-
ing from America.
Perhaps more than anything, it was the opportunity America afforded
for access to a range of disciplines and perspectives that was so important
to Saunders as she, in her own words, picked up ideas like a sponge. Here
she could meet chaplains, such as Carleton Sweetser, struggling with the care
of the dying in a modern hospital setting, and social workers, like Theodate
Soule at the United Hospital Fund of New York. In addition, there were psy-
chologists, sociologists, and anthropologists who, unlike most of their con-
temporaries in Britain, were also contributing to developments in the field of
care for the dying.
There was also the new cadre of pain specialists, such as Stanley Wallenstein
and Ray Houde, at Memorial Hospital, New York, and Henry Beecher at
Massachusetts General Hospital, from whom she received encouragement
and inspiration for her own studies. It resulted in a rich mixture of influences
and skills, and one that was later to become such an important aspect of the
modern multidisciplinary specialty of hospice and palliative care. There was
a sense of forces coming together, of new possibilities. A special relationship
was forged between Cicely Saunders and her American friends and colleagues
during the mid-​1960s. The relationship was part of an extraordinary ground-
swell of interest in the care of the dying and the bereaved, out of which new
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Making St Christopher’s work 103

social movements and professional specialities were quick to emerge, not only
in Britain and the United States, but worldwide. Moreover, in this process the
activities at St Christopher’s were to prove a key demonstrator.

Making St Christopher’s work

The opening of St Christopher’s Hospice marked the culmination of one
aspect of Cicely Saunders’s vocation, but also the mere beginning of its true
purpose. For now, the work of the hospice had to be developed in earnest, and
its ideas and principles would require testing in practice. Above all, it would
begin to serve as a source of inspiration to so many others in Britain and
around the world. From the opening of the hospice in the summer of 1967
to the autumn of 1985, a period of 17 years, Cicely Saunders was its medical
director. The job involved a huge quantum of daily clinical work and numer-
ous organizational responsibilities, as well as financial concerns, which were
never far away. There was also the need to attract appropriate staff, and in this,
her methods were often direct. She had attended medical school with Tom
West, who later joined the Church Missionary Society; when she heard he was
resigning from the mission field, she quickly wrote to him.
And when Cicely Saunders heard that I had given in my notice, she wrote and of-
fered me the job of her deputy at St Christopher’s. I wrote back and said that I was
delighted and flattered to take this very honourable job on. I had been home on
such occasions as the laying of the foundation stone for St Christopher’s. I had fol-
lowed the progress, through my mother and through Cicely, of the building, and
thought and prayer behind St Christopher’s, and I was deeply honoured. But I did
say I can’t join you for two years, therefore, there’s not much future in this offer.
And she wrote back and said, ‘In that case we’ll wait for you,’ which I often think
is the greatest compliment that Cicely ever paid me. The other thing that she did,
which was wonderful, was in the six months or year before I left Northern Nigeria,
she sold a rug which she’d inherited from her father and came out to see me in my
context, saying, ‘You’re going to spend the rest of your working life in my place,
I think I better come out and see your place before you leave it!’ And that was good.
So in 1972 I left Nigeria and came back, and started a job as deputy to Cicely in
1973, by which time, of course, St Christopher’s was up and going. And I reckon
that I came in as, not perhaps the second wave, but as the one and a half wave of
new appointments.42

For Saunders these years were filled with regular travelling, lecturing, and
writing. They were times of growing recognition for the movement that
she and her colleagues had initiated and of the global contribution she was
making to improvement in the care of the dying. With this came a measure
of fame that Cicely Saunders might hardly have contemplated in 1959. Quite
quickly, there were awards and honours, plaudits, and frequent publicity. At
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104 To Comfort Always

the same time, her personal life became more rewarding and eventually led
to marriage. These were expansive years, professionally and personally rich,
and lived to the full.
At St Christopher’s, new staff continued to be appointed, procedures and
policies were developed and refined, and the credibility of the service in the
local area was confirmed. The hospice became a training ground for many doc-
tors who would subsequently shape the direction of hospice care elsewhere in
the United Kingdom and further afield. At a symposium in October 1970, an
overview of the work of St Christopher’s emphasized several points.43 Despite
a continuing reliance on charitable grants and gifts, the NHS now contributed
two-​thirds of the running costs; indeed, the research programme, together
with the experimental outpatient and domiciliary service were at that time
wholly supported by NHS funding. The hospice included 54 inpatient beds
and the Drapers’ Wing had 16 ‘bed sitting rooms’ for elderly people. A teach-
ing unit was now under construction. By 1970, some 400 patients died at the
hospice each year, and between 40 to 60 patients were discharged home, at
least for a short time. Soon, the majority of patients had their first encounter
with the hospice’s services in their own homes.
At the same time, plans for other hospices modelled substantially upon
St Christopher’s were beginning to emerge—​ in Sheffield, Manchester,
Worthing, and elsewhere in the United Kingdom. There was a constant flow
of communication between the staff of St Christopher’s and others across the
United Kingdom with similar aspirations. As this collectivity of enthusiasm
developed, policymakers began to take a closer interest in the subject, and
the first national symposium on the care of the dying was held in London
in November 1972, with the proceedings published in the British Medical
Journal.44
A paper by Cicely Saunders that appeared in 1968 in a Catholic quarterly
elegantly captured St Christopher’s orientation to care for those in the last
stages of life.45 It called for a positive approach that sees this as a time not of
defeat, but of life’s fulfilment, recognizing that there will be many different
paths to life’s ending. Here comfort and care become the prominent aims in
a ‘middle way’ between too much and too little treatment, where understand-
ing and compassion are vital. In subsequent years and first articulated in the
American paper of 1966, we see in Saunders’s thinking a growing attention
to notions of personhood, particularly in the family context. This greater
focus on families was regarded as an important distinction between care at St
Christopher’s and earlier work at St Joseph’s. The emphasis on person speaks
in turn of a growing influence from psychology and theology. Saunders was
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Making St Christopher’s work 105

increasingly interested in how the person is seen always as someone in inter-

relationship with others, and how the person, thus seen, is being in the face of
physical deterioration. At such moments, ‘full time concern for the patient’
becomes essential. Elsewhere, this is neatly captured in the statement that
professional work in this area has two key dimensions: ‘We are concerned
with persons and we are concerned as persons.’46
Nevertheless, such caring, it was acknowledged, could be costly to those
who gave it. At St Christopher’s, emphasis was placed upon the development
of a multidisciplinary team that could work together to explore the needs
of individual patients at the deepest level, but which could also support and
enrich itself—​not only through the inclusion of a range of professional per-
spectives, but also of volunteers, as well as the children of staff, and the elderly
residents living in the Drapers’ Wing. A sense of community was fostered
that might serve to ameliorate the emotional consequences of work involving
constant exposure to loss, sorrow, and bereavement. In this context, atten-
tion was needed to support the staff and this was fostered at St Christopher’s
through small-group discussion, and the regular involvement and psychiatric
perspective of Colin Murray Parkes.
Between 1970 and 1974, a working party of the Church of England Board
for Social Responsibility sought to develop an Anglican contribution to the
debate on euthanasia. Saunders drafted two chapters in the group’s report.47
All members endorsed the recommendations, including: (1) the undesirabil-
ity of extending the term ‘euthanasia’ to incorporate the withdrawal of artifi-
cial means of preserving life, or to include the use of pain-​relieving drugs that
may marginally shorten life; (2) the assertion that if all care of the dying was at
the highest standard, then there would be no prima facie case for euthanasia;
and (3) the belief that such standards are more hindered by ignorance than
by money and staff shortages. A few years later, Cicely Saunders was active in
commenting on and expressing opposition to Baroness Wootton’s Incurable
Patients Bill, which came to the House of Lords in 1976, and about which
Saunders feared the right to die might be interpreted by some as a duty to do
so. Likewise, in 1977 and 1978, she took part in debates at the Royal Society
of Health and the Union Society, Cambridge, where in each case, motions
in support of the legalization of euthanasia were defeated. Her position was
clear: euthanasia is not a matter of desisting from active treatment; it is a kill-
ing act and the person who requests it has been failed in some way by others.
She did acknowledge, however, that both sides in the euthanasia debate have
a vendetta against pointless pain and impersonal indignity, although their
solutions were radically different in character.
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106 To Comfort Always

From the outset, there was an emphasis on the science and the art of caring
at St Christopher’s. The early research programme had three predominant
themes:

1. Psychosocial studies of grief and bereavement

2. Evaluation of St Christopher’s approach in relation to other care
organizations
3. Pharmacological work on the relative merits of different narcotics and
their management48

These endeavours marked a consolidation of the work by the early founders

of modern terminal care in the late 1950s and early 1960s.49 Nevertheless,
in a 1973 volume on health services research, the state of this emerging field
could be stated quite starkly: ‘The position of terminal care in this country
is at present unsatisfactory.’50 Although interest in research into terminal
care was growing, much of it remained descriptive and anecdotal, and high
quality work was desperately needed to promote a rational approach to the
care of the dying. Small achievements could be significant, as when Cicely
Saunders was asked to write a chapter on terminal care for a volume on the
scientific foundations of oncology, 51 the editors thought it necessary to jus-
tify their reasons for including a contribution from such an underdeveloped
medical field, where scientific foundations were only just being laid.
By 1978, some important evidence was emerging from research studies
conducted at St Christopher’s. Work by Colin Murray Parkes showed that
unrelieved pain, as reported later by families, was found among 8 per cent
of patients at St Christopher’s Hospice, compared to 20 per cent of those in
local hospitals and 29 per cent of those being cared for at home.52 Building on
the work of the St Christopher’s research fellow, Dr Robert Twycross, it was
also possible to state beyond reasonable doubt that morphine had become the
preferred analgesic over diamorphine, and that the previously much heralded
mixtures containing alcohol and cocaine should be discontinued.53 We shall
learn more of this work in Chapter 5.
Cicely Saunders could also observe that whereas ‘science tries to look at
things in their generality in order to use them; art tries to observe things—​
and people—​in their individuality in order to know them’.43 The photographs
that she used in her lectures and publications illustrated the importance of
welcoming patients and the involvement of the staff’s own children in the
life of the hospice. Patients were encouraged to write about their experiences
in prose and poetry; others made drawings and paintings that served as a
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Making St Christopher’s work 107

window on suffering. Such an approach was also fostered through the sense
of St Christopher’s as a community in which many who served felt supported
by some form of religious commitment.
By 1976, Nursing Times was publishing a revised and updated set of Cicely
Saunders’s articles that had originally appeared in 1959 and had caused so
much interest at that time.54 There was a sense that the field of terminal care
was beginning to consolidate. There were opportunities to review changes
that had occurred over the previous 17 years and to address new debates and
issues, such as ‘living wills’, ‘furore therapeutics’, and ‘meddlesome medi-
cine’. By now, the increasing use of the term palliative care, coined by Balfour
Mount in 1974, was coming to denote the transferability of ideas developed
in the hospice into other settings, including hospital and home, as well as a
broadening reach beyond those imminently dying.
The introduction of the term has been well documented.55 Inspired by read-
ing the works of Elizabeth Kübler-​Ross and Cicely Saunders, the Montreal-​
based surgeon Balfour Mount had visited St Christopher’s in 1974 and been
impressed by what he saw there. On his return to the Victoria Hospital, how-
ever, he found himself unconvinced by the term ‘hospice’, which in French
Canada had overtones of an impoverished and undignified home for the mor-
ibund. He pondered on an alternative term that might find wider applicabil-
ity. His ruminations on the issue soon bore fruit.

And I remember thinking that, as I considered various options, I was actually shav-
ing one morning and thought that if there are intensive care units and coronary care
units and surgical intensive care units, there could be a palliative care unit. That
seemed to have a nice ring to it; and a palliative care service. I wasn’t at that point too
sure about the etymology of the word ‘palliative’ but I liked the concept. Of course
to palliate at that point was in common usage, meaning to treat for goals other than
cure, and particularly locally we talked about palliative radiation therapy, and it was
simply meant that it was acknowledged to be non-​curative. And so that took me to
the Oxford English Dictionary and to a little search into the origins of the term and
to the Latin word pallium, to cloak and to hide and so forth and so on. And it seemed
to me that it passed from ‘to cloak or to hide’ to ‘to improve the quality of’, and that
seemed to be exactly what it was that we were trying to do. So it seemed to me a per-
fect term… One of the advantages of getting in on the ground floor of something
is you can shape it anyway you want and tell people: ‘This is the way it needs to be
done’ and you have some advantage. I wrote Robert Twycross and perhaps Cicely,
but certainly Robert’s response I remember very clearly: he wrote back immediately
to say, ‘I do not like your term palliative, it won’t do at all,’ and proceeded to give me a
critique as to why it wouldn’t do. And as I recall Cicely’s reaction to the term initially
was not very positive as well, but later she wrote a letter to say, you know, ‘I have to
say I was wrong, the term is excellent.’56
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108 To Comfort Always

It seems that Saunders adopted the term rather quickly. Within a few years of
Mount’s original visit to St Christopher’s, she was using it freely in her own
writing and referring to the Montreal palliative care unit as its source. It was
a significant step. The terminology had now changed and the focus of care
had moved beyond its original locus, that of the hospice, to encompass other
settings.
In 1978, Cicely Saunders’s first book—​which many had awaited for so
long—​finally appeared. It was an edited volume, with contributors who had
been involved directly with the work of St Christopher’s. Her first chapter was
important in opening up a debate about the relationship of terminal care to
the ‘cure’ and ‘care’ systems, arguing that no patient should be inappropri-
ately locked into one or other system.53 By the early 1980s, she was at even
greater pains to suggest that the ‘terminal’ condition of a patient may not be
an irreversible state,57 and ‘active’, ‘palliative’, and ‘terminal’ care could each
be seen as overlapping categories.
The professional and clinical achievements of these years, however, cannot
be allowed to mask the organizational issues and difficulties that also had to
be overcome. There were losses and stresses that from time to time affected
the whole of St Christopher’s. In 1970, Dr Ron Welldon, the hospice’s first
research fellow, suddenly died, the news reaching Saunders just as she was
about to give a lecture in the United States. The following year, the death
of Lord Thurlow after a period of illness marked the loss of a chairman in
whom she had great confidence and who had been such a support to her in
the hospice’s formative years. There was also unwelcome publicity following
the screening on German television of a film about the hospice. There were
periodic financial crises, including a major one in 1974. In addition, some
visitors to the hospice, on writing about their experiences, were critical about
staff morale and the management culture, some describing it as authoritar-
ian and inflexible, and concerned only for the patients and not for the staff.
Yet, in 1979 a foundation group at St Christopher’s that was formed to review
the early statement of Aim and Basis drafted by Olive Wyon could find little
reason for any significant reorientation.
In 1980, St Christopher’s held its first international conference. It was
characterized as the hospice’s Bar Mitzvah and involved participants from
17 different countries.58 The contributions contained a growing conviction
that the work of hospice should be integrated with general medical practice,
forming a complementary resource and service. There was now an expand-
ing confidence that the ideas and influences developed in the world of chari-
table hospices were beginning to affect the mainstream healthcare system.
109

Life, faith, and work at St Christopher’s 109

Life, faith, and work at St Christopher’s

Following a rather dramatic religious experience in the 1940s, Cicely Saunders
had moved in Christian evangelical circles for several years, yet she was also
at ease in the Roman Catholic ambience of St Joseph’s Hospice. She was in-
clined to worship intently and to read widely. Her personal beliefs and ideas
about religion were central to her plans for St Christopher’s. It is through the
evolving sense of a personal calling that we see this most visibly. Strongly evi-
denced in her early correspondence about the idea of St Christopher’s, where
many passages refer to a sense of being drawn by God to this work, within a
few years it was as if the whole project had taken on a sense of something pre-
determined and part of a greater purpose. The nurturing of the oft-​repeated
phrase of David Tasma—​‘Let me be a window in your home’—​contributed to
this. It was akin to a ‘foundation myth’ that served constantly to reinforce
the origins and purpose of the hospice. There is a sense in which if David
Tasma had not existed, it might have been necessary for her to invent him.
Yasmin Gunaratnum has written eloquently about David Tasma and Cicely
Saunders. She shows how ‘the dark coordinates’ of his life have been left unex-
amined in the build-​up of oft-​repeated anecdotes about him. Why did Cicely
Saunders have recourse to an outsider, a migrant, for the formation of her
thinking? Did he serve as a foreign founder whose timely departure from the
narrative prevented him becoming disruptive and unruly? As Gunaratnum
explains: ‘In bringing David Tasma’s fractured story with her into the public
domain, it has been put into a relation with injustices suffered by other dying
people, allowing pain to be many things, weighty in its historical content, but
not without company.’59
In this context, there could be no straightforward and simplistic blue-
print for the hospice and the ‘window’ it contained. The precise charac-
ter of St Christopher’s religious status had required careful consideration.
Undoubtedly, St Christopher’s became an organization of Christian motiva-
tion; but in opting for a strategy of practical action in the world, rather than
an ethic of caring located outside it, Saunders and her colleagues gave birth
to an idea capable of wide adaptation and development across many cultures
and settings.
It is now clear that during the years leading up to 1967, the hospice move-
ment was already in formation. The opening of St Christopher’s in July of
that year should be seen not as the start of the modern hospice initiative, but
as the culmination of a project that made that initiative possible. Although
the term hospice movement had not yet appeared in the lexicon of termi-
nal care in 1967, its foundations were firmly established. From 1958 to 1968,
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110 To Comfort Always

between the ages of 40 and 50, Cicely Saunders had undertaken a remarkable
personal project. Harnessing her own faith, her private sorrows, her pro-
fessional skills, and her indomitable energies, she had gathered around her
the support of friends and colleagues who, with her, made St Christopher’s
Hospice possible.
These years inevitably made huge demands on her personal resources.
A life devoted to giving also needs to receive support and nourishment,
both through the realm of faith or meaning, and in relationships with
others. Cicely Saunders was capable of prodigious quantities of work at this
time, but she could also be vulnerable to illness. A life lived in the public
domain needs to foster some private areas for reflection, recuperation, and
intimacy. In 1968, Cicely Saunders’s mother died in St Christopher’s; she
had remained active up to the end, and it was a loss that could be accepted
by her daughter. However, just over two years after the hospice opened,
there was a long period of sick leave for its founder, from the autumn of
1969 to March 1970.
From 1963 onward, her relationship with the artist Marian Bohusz-​Szyszko
had been developing, slowly and intermittently. He was born in Poland in 1901
and had studied fine art and painting at the universities of Wilno and Cracow,
and at the Warsaw Academy of Fine Arts. He spent most of World War II as
a prisoner of war before making his way to Italy in 1945. Subsequently he
settled in London, where in the autumn of 1963 he held a major retrospec-
tive at the Drian Galleries in Porchester Place. Here his work had come to
the attention of Cicely Saunders. She fell in love with the paintings and then
with him. She became his patron, and his work was prominently displayed
in the hospice from the outset. He had professed his love for her, but was not
free to marry. His long-​estranged wife in Poland was still alive, he continued
to support her financially, and his Catholic faith precluded any divorce. It
seemed an arrangement that suited him, but over time, a suitable solution
evolved. In 1969, Cicely Saunders moved from Lambeth to Sydenham to live
closer to the hospice. There, with Polish friends of Marian, she purchased a
house where the two couples could share accommodation. They thought of it
as their ‘kibbutz’, and it was to prove a lasting domestic arrangement. In 1975,
Marian’s wife died, but it was not until 1980, 17 years after they had first met,
that Cicely Saunders and Marian Bohusz-​Szysko married. She was 61 and he
79. At first, their news was kept secret to all but a tiny group of close friends,
but gradually it became public and delighted many. Her last five years as the
hospice medical director were spent as a married woman. Secure in her status,
she had never been so content with her personal life.
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Wider influence 111

Wider influence
Between 1967 and 1985, Cicely Saunders produced, individually and with
others, around 85 publications; they appeared in several languages and in
numerous countries.5, 60 She wrote for clinical journals and prestigious text-
books, for religious publications, and for the wider public. Three clinical and
organizationally oriented books on hospice and palliative care appeared, and
one of them was soon produced in a second edition. There was also a collec-
tion of poems and prose pieces produced for patients, families, and profes-
sionals encountering suffering and disease—​an early example of a contribu-
tion to the medical humanities as an aid to teaching.61 Her work appeared in
the proceedings of symposia and conferences, it was described in magazines
and newspapers, and it became the subject of documentary films. Links with
overseas colleagues produced a growing cross-​fertilization of ideas.
Over this period, there was also growing reflection on the state of the
‘movement’, which was developing around hospices and similar centres. As
her work matured, Saunders reflected more on the early origins of homes
and hospices for the dying. She also had increasing evidence that palliative
care was something that could be developed in many modes and settings—​
extended beyond its initial successes with cancer patients to include those
with non-​malignant conditions, such as motor neurone disease, and in due
course, the challenge of caring for people with AIDS. Above all, its major
purpose came to be seen as the improvement of care within the mainstream
setting, not through the continuing proliferation of hospice units, many of
them independent charitable organizations, but rather through education
and training, and the broader diffusion of appropriate knowledge, skills, and
attitudes. Accordingly, we see at this time the first discussions taking place
about the creation of national representative bodies to promote the interests
of hospices and those who work with them, such as Help the Hospices and the
Association of Palliative Medicine.
Of course, St Christopher’s Hospice had a vital role to play. Initially it was the
only centre for specialized education and training in the new field of terminal
care. There was a tidal wave of requests from around the world to visit, to work,
and to spend time at the hospice. Initially these were encouraged, even fostered.
By 1975, there were 2 000 visitors per annum; special hours were set aside for
visitors each week, and in due course, some tours were conducted in French.
However, some enthusiasts could be a cause of irritation, and Saunders was not
well disposed to those who made extravagant journeys to St Christopher’s at
the expense of overlooking growing expertise nearer to home.62
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112 To Comfort Always

There were also many people who wished Cicely Saunders would come to
them. In her years as medical director, she visited North America around
a dozen times, developing close professional links as well as an enduring
friendship with Balfour Mount and the palliative care service at the Victoria
Hospital, Montreal, and at the international conference that he hosted every
two years starting in 1976. She also made visits to many other countries, in-
cluding Yugoslavia, Belgium, Australia, Israel, and South Africa. Her network
of collaborators expanded, and her influence and reputation grew, as she was
increasingly acknowledged as the ‘founder’ of the modern hospice movement.
It is apparent that Cicely Saunders did not see her vision as something that
could only be bounded by the discipline of medicine. The concept of ‘total
pain’, for example, which she formulated in her writings of the late 1950s and
early 1960s, adopted a wide-​ranging definition of suffering, taking into ac-
count physical, emotional, psychological, social, and spiritual elements (see
Chapter 5). These were to be addressed through the combined skills of a mul-
tidisciplinary team of carers, including volunteers, with active attention to
family involvement. In seeking to establish a foundation outside the param-
eters of the British National Health Service in the form of an independent,
charitable hospice, Saunders also displayed scepticism about the ability of
the mainstream healthcare system to foster her ambitions. In the early 1980s,
looking back on the period described here, she again recalled David Tasma’s
reference to the window: ‘We moved out of the National Health Service with a
great deal of its interest and support, in order to build round that window. We
moved out so that attitudes and knowledge could move back in …’58
Moving out meant establishing an inpatient hospice followed by a home-
care service that would become a centre for the development of three activi-
ties: clinical care, teaching, and research. In Britain, others quickly followed
along similar lines, although few combined these three elements at the same
level. In the United States and elsewhere, the ideas were developed and adapted
according to local context and quite quickly a separate trajectory emerged
for ‘hospice’ based on homecare and a federal system of funding. The notion
of ‘community’ developed in the St Christopher’s model was elaborated in
various ways. The multidisciplinary team became emblematic of hospice care;
there was a great deal of emphasis on the active relationship between hospices
and their local communities. As the work developed, it took on the character
of a reformist social movement, challenging prevailing attitudes, practices,
and modes of organization. At St Christopher’s, which served as the locus of
an international movement for many years, the idea of community remained
important and continued to be worked through in various ways.
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Wider influence 113

The real importance of the early thinking that led to St Christopher’s, how-
ever, is evident in what was decided against. The ideas not pursued and those
allowed to recede are themselves significant. In particular, it was confirmed
that this would not be an endeavour located in a narrow evangelical wing of
the Church of England, where the primary purpose would be to proselytize.
Nor was it to be a new religious community where a dedicated few, operating
outside of the secular world, would care for the dying in their own special way.
Instead, it became a foundation underpinned by the Christian religion, where
the contributions of various disciplines were also fostered; where critical reflec-
tion through research and teaching could take place; and where others came to
develop their own ideas and skills. Without such omissions and commissions, it
is difficult to envision the subsequent development of the international hospice-​
palliative care movement. The success of the vision, as defined, notwithstand-
ing its Christian focus, was that it could be emulated or elaborated, and this
made possible its global spread in the following years. It was also the engine for
the initial articulation of a new field of medicine—​one with the potential to de-
velop its own separate interests and skills, which would gain wider recognition
from the medical establishment, as we shall see in Chapters 5 and 6.

Notes
1. Cameron Morris J (1959). The management of cases in the terminal stages of malig-
nant disease. St Mary’s Hospital Gazette, 65(4):4–​6.
2. Graeme P, Muras H, Yale R (1961). The terminal care of the cancer patient. St Mary’s
Hospital Gazette, 67(4):118–​125.
3. Saunders C (1962). Working at St Joseph’s Hospice, Hackney. Annual Report of St
Vincent’s, Dublin, pp. 37–​9.
4. Clark D (1998). Originating a movement: Cicely Saunders and the development of St
Christopher’s Hospice, 1957–​67. Mortality, 3(1):43– ​63.
5. Clark D (1998). An annotated bibliography of the publications of Cicely Saunders–​1.
1958–​67. Palliative Medicine, 12(3):181–​93.
6. Clark D (2002). Cicely Saunders. Founder of the Hospice Movement: Selected
Letters 1959–​1999. Oxford: Oxford University Press; Clark D (2006). Introduction.
In: Saunders C (ed.). Selected Writings 1958–​2004, pp. xiii–​x xvii. Oxford, UK: Oxford
University Press.
7. Saunders C (1981). The founding philosophy. In: Saunders C, Summers D, Teller N
(eds.). Hospice: The Living Idea, p. 4. London, UK: Edward Arnold.
8. Saunders C (1958). Dying of Cancer. St Thomas’s Hospital Gazette, 56(2):37–​47.
9. Clark D (1999). ‘Total pain’, disciplinary power, and the body in the work of Cicely
Saunders, 1958–​1967. Social Science & Medicine, 49:727–​36.
10. Du Boulay S (1994). Cicely Saunders: The Founder of the Modern Hospice Movement,
rev. ed. London, UK: Hodder and Stoughton.
11. Wyon O (1963). Living Springs: New Religious Movements in Western Europe.
London, UK: SCM Press.
12. Cicely Saunders, letter to Olive Wyon, 4 March 1960.
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114 To Comfort Always

13. Cicely Saunders, letter to Christopher Saunders, 30 August 1960.

14. Betty West, letter to Cicely Saunders, 11 February 1960.
15. Cicely Saunders, letter to Olive Wyon, 6 December 1960.
16. Rosetta Burch, letter to Cicely Saunders, 16 June 1960.
17. Cicely Saunders, letter to Olive Wyon, 11 June 1964.
18. St Christopher’s Hospice Aim and Basis (1964). Mimeograph, revised.
19. Saunders C (1959a). Care of the dying 1. The problem of euthanasia. Nursing Times (9
October):960–​1; Saunders C (1959b). Care of the dying 2. Should a patient know …?
Nursing Times (16 October):994–​5; Saunders C (1959c). Care of the dying 3. Control
of pain in terminal cancer. Nursing Times (23 October):1031–​2; Saunders C (1959d).
Care of the dying 4. Mental distress in the dying. Nursing Times (30 October):1067–​9;
Saunders C (1959e). Care of the dying 5. The nursing of patients dying of cancer.
Nursing Times (6 November):1091–​2; Saunders C (1959f). Care of the dying 6. When a
patient is dying. Nursing Times (19 November):1129–​30.
20. Saunders C (1960). The management of patients in the terminal stage. In: Raven R
(ed.). Cancer, vol 6, pp. 403–​417. London, UK: Butterworth and Company.
21. Hospice History Project: Mary Baines interview with Neil Small, 10 July 1996.
22. Saunders C (1967f). St Christopher’s Hospice. British Hospital Journal and Social
Service Review, 77:2127–​30.
23. Saunders C (1963). Report of Tour in the United States of America (Spring),
unpublished.
24. King’s College. Archive Catalogues: Saunders, Dame Cicely. Available at http://​w ww.
kingscollections.org/​catalogues/​kclca/​collection/​s/​10sa88-​1, accessed 7 July 2014.
25. Feifel H (1959). The Meaning of Death. New York, NY: McGraw-​Hill.
26. Hospice History Project: Florence Wald interview with Neil Small, 29 February 1996.
27. Buck J (2009). ‘I am willing to take the risk’: Politics, policy, and translation of the
hospice ideal. Journal of Clinical Nursing, 18(19):2700–​9.
28. Cicely Saunders, letter to Esther Lucille Brown, 16 February 1965.
29. Frankl V (1962). Man’s Search for Meaning. Boston, MA: Beacon.
30. Esther Lucille Brown, letter to Cicely Saunders, 30 November 1965.
31. Esther Lucille Brown, letter to Cicely Saunders, 17 November 1966.
32. Glaser B, Strauss A (1965). Awareness of Dying. Chicago, IL: Aldine.
33. Saunders C (1966). Unpublished text of lecture at Yale School of Nursing (28 April).
34. Kübler-​Ross E (1969). On Death and Dying. London, UK: Routledge.
35. Hospice History Project: Colin Murray Parkes interview with David Clark, 10
January 1996.
36. Saunders C (1964). Death. The Living Church, 26 (July):8–​9.
37. Saunders C (1965). The last stages of life. American Journal of Nursing, 65(3):70–​5.
38. Saunders C (1966). Terminal patient care. Geriatrics, 21(12):70–​4.
39. Saunders C (1969). The moment of truth: Care of the dying person. In: Pearson L
(ed.). Death and Dying: Current issues in the treatment of the dying person, pp. 49–​78.
Cleveland, OH: Case Western Reserve University Press.
40. Robert Kastenbaum, letter to Cicely Saunders, 13 October 1966.
41. Saunders C (1966). A medical director’s view. Psychiatric Opinion, 3(4):28–​34.
42. Hospice History Project: Tom West interview with Neil Small, 28 January 1997.
43. Saunders C (1971). The patient’s response to treatment. A photographic presentation
showing patients and their families. In: Catastrophic Illness in the Seventies: Critical
Issues and Complex Decisions, pp. 33–​46. Proceedings of the Fourth National
Symposium, 15–​16 October 1970. New York, NY: Cancer Care.
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Wider influence 115

44. Saunders C (1973). A death in the family: A professional view. British Medical
Journal, 1(844):30–​1.
45. Saunders C (1968). The last stages of life. Recover (Summer):26–​9.
46. Saunders C (1972). A therapeutic community: St Christopher’s Hospice.
In: Schoenberg B, Carr AC, Peretz D, Kutscher AH (eds.). Psychosocial Aspects
of Terminal Care, pp. 275–​89. New York, NY and London, UK: Columbia
University Press.
47. Saunders C (1975). Member of Church of England Board of Social Responsibility
Working Party. On Dying Well: An Anglican Contribution to the Debate on
Euthanasia. London, UK: Church Information Office.
48. Saunders C (1967). The Management of Terminal Illness. London, UK: Hospital
Medicine Publications Limited.
49. Clark D (1999). Cradled to the grave? Terminal care in the United Kingdom,
1948–​67. Mortality, 4(3):225–​47.
50. Saunders C, Winner A (1973). Research into terminal care of cancer patients.
In: McLachlan G (ed.). Portfolio for Health 2. The Developing Programme of the DHSS
in Health Services Research, pp. 19–​25. Nuffield Provincial Hospitals Trust. London,
UK: Oxford University Press.
51. Saunders C (1976). The challenge of terminal care. In: Symington T, Carter R (eds.).
The Scientific Foundations of Oncology, pp. 673–​9. London, UK: Heinemann.
52. Murray Parkes C (1979). Terminal care: Evaluation of in-​patient service at St
Christopher’s Hospice Part 1. Views of surviving spouse in effects of the service on
the patient. Postgraduate Medical Journal, 55:517–​22.
53. Saunders C (1978). Appropriate treatment, appropriate death. In: Saunders C (ed.).
The Management of Terminal Malignant Disease. London, UK: Edward Arnold.
54. Saunders C (1976). Care of the dying—​1. The problem of euthanasia. Nursing Times,
72:1003–​5.
55. Mount B (1997). The Royal Victoria Hospital Palliative Care Service: A Canadian
experience. In: Saunders C, Kastenbaum R (eds.). Hospice Care on the International
Scene. New York, NY: Springer.
56. Hospice History Project: David Clark with Balfour Mount, 14 March 2001.
57. Saunders C (1981). Current views on pain relief and terminal care. In: Swerdlow M
(ed.). The Therapy of Pain, pp. 215–​41. Lancaster, PA: MTP Press.
58. Saunders S, Summers D, Teller N (1981). Hospice: The Living Idea. London,
UK: Edward Arnold.
59. Gunaratunum Y (2013). Death and the Migrant: Bodies, Borders and Care. London,
UK: Bloomsbury.
60. Clark D (1999). An annotated bibliography of the publications of Cicely Saunders—​
2. 1968–​77. Palliative Medicine, 13:485–​501.
61. Saunders C (1983). Beyond All Pain: A Companion for the Suffering and Bereaved.
London, UK: SPCK.
62. Clark D (2001). A special relationship: Cicely Saunders, the United States, and the
early foundations of the hospice movement. Illness, Crisis, and Loss, 9(1):15–​30.
116
117

Chapter 5

Defining the clinical realm

Figure 5.1 Robert Twycross (1941–​)

On completion of his further medical training, Twycross took up a
position as clinical research fellow at St Christopher’s Hospice, in London
in 1971. Here he embarked on a groundbreaking series of studies on the
actions of morphine, in combination with other agents, on pain caused
by advanced malignant disease. His studies revolutionized the practice
of cancer pain relief and led to the abandonment of complex mixtures,
such as the Brompton Cocktail. After establishing his own palliative
care unit in Oxford, he went on to teach extensively and in particular
to influence the work of the World Health Organization as it began to
engage with pain and palliative care as global, public health issues. He is
pictured here with his wife Deidre Twycross at the First World Congress
on Cancer Pain, held in Venice in 1978.
Reproduced by kind permission of Robert and Deidre Twycross.
Copyright © 2016 Robert and Deidre Twycross.
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118 To Comfort Always

A loose web of activity

The pioneers of hospice and palliative care in the 1960s and 1970s carried a
heavy burden. Anyone associated with this work was likely to be involved
in lobbying, advocacy, and innovation in service delivery, as well as being
drawn into fundraising and capital development. Clinicians had to forge a
loose web of activity, values, and aspirations into a recognizable and definable
clinical domain. This meant characterizing the patients who could most ben-
efit from the new and developing approaches—​t he paradigm case being the
person dying of cancer. It also meant understanding and codifying patients’
main clinical signs and symptoms, taking into account that these might be
social, psychological and spiritual, as well as physical. In particular, it called
for a detailed understanding of pain. This led to some rich areas of phar-
macological as well as phenomenological insight, to efforts to describe and
measure pain, and to innovative approaches in pain relief. Such work found
these pioneers engaging in radical new methods for the use of strong opiates
and, in time, building new research-​based knowledge and understanding of
these drugs. By the early 1980s, these efforts were taking on significant inter-
national dimensions and the World Health Organization (WHO) began to
support innovation in global cancer pain relief. Gaining recognition for this
newly acquired knowledge through publication in established journals and
the creation of specialist outlets, as well as in the building of affinities between
colleagues, ideas, and practices, were all crucial elements in defining pallia-
tive medicine as a distinctive area of clinical intervention.

The terrain of palliative medicine

By the mid-​twentieth century, innovative treatments were proliferating in med-
icine and there was an increasing emphasis upon the cure and rehabilitation of
those with serious illness. From oncology to cardiology and geriatrics, from
psychiatry to paediatrics, new fields were opening up with their own defined
boundaries, internal status hierarchies, codified claims to knowledge, and spe-
cific skills and technologies. It was important, therefore, that the growing inter-
est in hospice and palliative care should articulate with these developments. To
survive and thrive, hospice doctors would also need to speak the language of
the modern medical establishment. That was not always to their liking.
As we have seen, there was sometimes a sense of scepticism towards re-
search. For some, letters of thanks from grateful relatives were the only reas-
surances needed that the provided care was along the right lines. Moreover,
some saw the hospice as a place to connect with patients in a way that modern
medicine increasingly prevented. For them, hospice care came to signify a
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The terr ain of palliative medicine 119

reaching out to those in the terminal phase of illness, often in a manner in-
fluenced by religious or personal and social commitments, with the goal of
engaging the fundamentals of human mortality—​making the departure from
life dignified, meaningful, and free from suffering. This version of hospice
care also had wider goals. Yes, it was about medicine, services, and systems
of care. But it also spoke to a specific social agenda: the recognition of death
as a part of the fabric of life, and the need for medicine and healthcare to re-​
engage with the care of dying and bereaved persons. It was therefore less pre-
occupied with research and evidence in the sense understood by biomedicine.
The notion that the hospice could provide a new approach to care at the end
of life, one that might make roots and take hold elsewhere in the healthcare
system, if perhaps slightly altered in the process, was a goal for some of these
twentieth-​century hospice doctors, but not all. As palliative medicine devel-
oped, however, and began to uncouple itself from some of the wider attributes
of hospice care, the intent to engage with the healthcare system and find a
place within it became much more central and explicit.
These differing priorities within hospice and palliative care had wide rever-
berations and often shaped the pathways of development in specific countries
and contexts. In turn, there were also detractors and doubters outside the field,
for whom hospice care could appear prescriptive and even proselytizing. It was
perhaps too caught up in an idealism that would be difficult to apply beyond a
limited number of services and initiatives run by committed activists. Some
considered that it muscled in on the territory of the generalist—​surely these
services were what all good doctors were already offering? Viewed from the per-
spective of the public health system, it could also be seen as a limited approach,
focused mainly on malignant and end-​stage disease and, therefore, unlikely to
be capable of meeting needs at the general population’s level. As one British
detractor later declaimed, hospices appeared ‘too good to be true and too small
to be useful’.1 In America there was also concern about the ‘death groupies’ at-
tracted to hospices, who were ‘full of good intentions and slightly crazy ideas’.2
Not all physicians were sceptical, however, and the history of the modern
hospice includes many examples of medical doctors who stepped off their
professional tramlines to engage in a field where alternative approaches might
be possible and where working alliances could go beyond the obvious net-
works of the medical system. Over time, some of these (though perhaps a
minority) would gain fluency and a degree of acumen in assessing outcomes,
modelling interventions against best evidence, and evaluating the costs and
benefits of particular approaches. There was a need for a strategy and a way
of thinking that would translate better into health system contexts and that
would engage more effectively with professional agendas and public health
orientations. This was to be the cornerstone of palliative care and, within it,
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120 To Comfort Always

of the emerging specialty of palliative medicine. However, there was much to

be done before that point could be reached.
There were also generational and cohort aspects to the early pioneers.
Members of the first cohort of British hospice doctors, who were already em-
barked on a medical career and became attracted to hospice care, were usu-
ally qualified in and committed to a particular strand of hospital medicine, or
to general practice. Some had heard of Cicely Saunders as medical students.
Many came to hospice care through locally organized groups, and the ef-
forts of charitable bodies to develop hospice services. They took on the role of
champions for hospice care in their local communities. They were the trusted
local physicians who would get involved in lobbying the health authorities,
giving public talks, and helping with fundraising. When the hospices became
operational, they would often become the part-​time medical directors. They
were not trained in this line of medicine. Self-​taught to a degree, some availed
themselves of ad hoc opportunities to spend time at St Christopher’s Hospice,
as well as the other hospices that began to appear in the United Kingdom from
the early 1970s onwards. Dr Tony Crowther, a GP and later medical direc-
tor of St Luke’s Hospice, Sheffield, is such an example. He describes here his
first encounter with the Cicely Saunders approach, while working as a trainee
doctor in a London teaching hospital in 1961. It was more than a decade later
that he became actively involved with his local hospice.
One of my jobs [as a houseman] was to ring St Joseph’s Hospice in Hackney and ask
for patients to be transferred there. And that was the time when Cicely Saunders
was working there … And she actually rang us one day and said ‘I’d like to show
you round, do a ward round with you.’ And we did this ward round, and I’ll always
remember, she introduced us to a patient with cancer of the stomach who was read-
ing a book, sitting up in bed, with totally inoperable carcinoma. And we came away
from the bed, and I was the bright-​eyed, bushy-​tailed houseman who said, ‘Excuse
me, Dr Saunders, but I haven’t seen any fridges for blood or drip sacks to give blood,
and yet that man with a cancer of the stomach might have a haematemesis, a mas-
sive haematemesis,’ which is what we’d been taught in pathology. And, of course
that just isn’t true, massive haemorrhages are actually amazingly rare in terminally
ill patients. And she said, ‘Well, it’s unlikely, but if he did, he’d have an injection of
morphine and he would either die of his haemorrhage comfortably and unaware of
what was happening, or if he didn’t die from it then we would think about and con-
sider transfusion the next day.’ And I thought, ‘Wow! What commonsense. That’s
humanity, that’s normality’, because I’d only ever been taught resuscitation and put-
ting drips up and saving lives, and I thought, ‘Wow! That is brilliant’. And then—
​I suppose—​I forgot about it.3

There was however a growing public interest in this kind of approach, a rising
interest in how suffering at the end of life could be avoided, how the stigmatiz-
ing elements of a death from cancer could be overcome, and what local people
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The problem of cancer pain 121

of all stripes could do about it in their communities. By the close of the 1970s,
hospice philosophy had captured the imagination of people in many parts of
the United Kingdom. Fifty-​eight hospices were founded between 1981 and
1984, compared with 36 during the whole of the previous decade. Part of the
appeal for many of these individuals was a determination to draw attention
to the problem of pain at the end of life, and particularly for those dying from
cancer. Moreover, this became a rather special focus and rallying call.

The problem of cancer pain

The liberal use of pain medication could alarm doctors who had been social-
ized into using morphine with extreme caution. Since the early twentieth cen-
tury, greater regulation of the use of opiates in several countries meant that
patients could find it difficult to get adequate pain relief. Both doctors and
patients were concerned about the possibility of addiction to strong drugs.
Reinforcing this perspective, the endurance of pain without resort to power-
ful narcotics was portrayed as a test of moral fortitude and, in the case of
cancer, an inevitable aspect of advanced malignancy.4 Treatments that inter-
rupted the pain system by means of nerve blocks or surgical sectioning of
the spinal cord or brain had therefore gained favour, meaning that the use
of morphine for pain was seen as a last resort.5 The new hospice and pal-
liative medicine doctors sought to promote a different orthodoxy, and this
involved forging a connection with the parallel (and also emerging) field of
non-​surgical pain medicine.
In 1953 in the United States, John Bonica published the first textbook of
pain medicine, in which the role of morphine was reappraised. He wrote: ‘In
spite of what has been and will be said, it is my opinion that narcotic drugs,
particularly morphine, when properly used have no pharmacological rivals
in the management of intractable pain associated with inoperable disease.’6
His groundbreaking work was followed by other studies—​for example, one
in Boston on terminal cancer care among 200 patients7 and a paper on social
casework with cancer patients.8, 9 There were also studies from Britain on
public opinion about cancer and the late presentation of cancer patients.10, 11
All of these offered insight into the problems, pain, and suffering of patients
and families affected by advanced disease, particularly cancer, which would
influence future activists in palliative care.
Before the 1970s, however, cancer pain had generally received little interna-
tional attention as either a clinical or a public health problem, and it was often
regarded as an intractable, not fully controllable, consequence of the disease.
4, 12
From the early 1970s, John Bonica had been driving the development of
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122 To Comfort Always

the International Association for the Study of Pain (IASP). He had gathered
together an international group in 1973, in Issaquah, Washington, near his
base in Seattle. Buoyed with enthusiasm, IASP held its first World Congress
in Florence in 1975 and the first issue of the journal Pain was published in
the same year. Pain specialists Dr Kathleen Foley from the United States and
Dr Vittorio Ventafridda from Italy organized a follow-​up meeting on cancer
pain immediately after the congress in Florence, and this was attended by 150
people.13 Research presented at this and subsequent conferences suggested that
physicians had the means to relieve even severe cancer pain, and that the prin-
cipal factors contributing to poor pain management were legal barriers against
opioid use, and a lack of knowledge in pain management on the part of clini-
cians. Soon the National Cancer Institute in the United States was supporting
work on the epidemiology of cancer pain in a collaborative study involving five
centres there, as well as St Christopher’s Hospice in London and the National
Cancer Institute in Milan. Some of those involved went on to contribute to the
first International Symposium on Cancer Pain held in Venice in 1978.14
The problem of cancer pain was being tackled from two directions. On the
one side were figures from the hospice movement, notably Dr Robert Twycross
(Figure 5.1), who was undertaking research at St Christopher’s. On the other
was the growing cadre of pain specialists who were grouping under the banner
of IASP. Although operating out of different clinical settings and frameworks,
there was at least some overlap between them. It was this coming together of
pain specialists with hospice medicine specialists and relevant oncologists that
led to the development of improved methods for managing pain.15 The Venice
meeting was supported by the private foundation of the industrialist Floriani
family of Milan who, encouraged by Ventafridda, was taking a special inter-
est in pain and hospice care. Held on 24–​27 May 1978 on one of the Venetian
islands, it became a landmark event in the history of the field and resulted
in a hefty volume, edited by Ventafridda and Bonica.16 As Marcia Meldrum
has observed, it was the site of a stand-​off between Robert Twycross of St
Christopher’s and Ray Houde of Memorial Sloan Kettering. They had clashed
on three key issues: the question of ‘tolerance’ to opiates, the rule of giving
analgesia ‘by the clock’, and the benefits of parenteral versus oral administra-
tion of morphine. Perhaps urged on by the presence at the meeting of Cicely
Saunders, Twycross saw little evidence of tolerance and advocated for careful
titration of the drug, arguing forcibly for a rigid approach to regular giving.17
This approach soon began to shape the emerging discussion at WHO.
In 1982, WHO enlisted the aid of these hospice care leaders and cancer
pain specialists, plus pharmaceutical manufacturers to develop a global
Programme for Cancer Pain Relief. It would be based on a three-​step
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The problem of cancer pain 123

analgesic ‘ladder’ with the use of adjuvant therapies, and incorporating the
use of strong opioids as the third step. The idea was reputedly sketched on
a paper serviette by Ventafridda in the cafeteria of WHO in Geneva.15 This
was an early sign of cancer pain coming to be characterized or ‘framed’
as a public health issue. One of the key participants in these discussions,
Kathleen Foley, the neurologist and pain specialist from Memorial Sloan
Kettering Hospital, New York, and subsequently a major leader in the global
development of palliative care, describes the context, and how the work was
undertaken.

In 1981, I was at Memorial Sloan Kettering and had been there for about six years,
and had been working on developing a clinical pain research programme, and that
worked on identifying the nature of pain and the epidemiology of pain in cancer
patients, and John Bonica and Jan Stjernswärd, who was then the Director for the
Cancer Programme of the WHO, had decided that we needed to address cancer pain
at an international level. And so really I would say that the concept, or the idea of
pain as a public health issue and one that the WHO should consider really originated
with Jan Stjernswärd, with John Bonica—​and in fact Mark Swerdlow, who was an
early, an important contributor to those early discussions and those initiatives—​and
Vittoria Ventafridda … And we basically sat days on end talking about develop-
ing a simple monograph on cancer pain relief. I had enormous difficulties with that
because I didn’t think anything was simple and everyone kept wanting to make it
simple, so I must say that I was taught about public health in that meeting from
the perspective of understanding that, if you wanted to move an agenda forward
at a public health level, then you had to make it simple. And really to their credit,
I would say that it was Jan Stjernswärd who kept pushing hard about making it
simple and not being a content expert; and then Robert Twycross, who was clearly a
content expert, and who had a wonderful ability to make things simple, and who was
willing to make it simple even if he wasn’t so sure they were right; and myself who
was somewhere in between. But what came out of that meeting was, what we called
the Methods for Pain Relief—​and we called them methods because we were work-
ing under a WHO umbrella with the Floriani Foundation, but not in a very official
capacity. And so that, if you really wanted a document, you would need an expert
panel, and you couldn’t call them guidelines before you had tested them as guide-
lines. It was the first of the meetings that led to an expert panel, meeting in Geneva,
in which Robert wrote the first draft of the document and then everyone critiqued
it, re-​wrote it, advised about it. But really again, to Robert’s credit, he wrote a very
extensive and detailed document that was heavily edited and changed and simplified
even more but I think it carries a very strong imprint of his teachings and work-
ings and writings. And typically the way those panels worked was that you came
and stayed in Geneva for five days and you worked in the days at the meeting and
then you worked at night to revise the documents. So it was quite intense, and quite
extensive, and it was like, typically, whenever we met. We got through that process
and then we had a document that required lots of editing and I—​and this is a total
aside—​but hilariously funny, I was on a trip with my family and I remembered Jan
meeting me at the train station as my family and I were driving by, and we sat in this
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124 To Comfort Always

train station to finish off the editing of it while my husband and kids, you know, went
God knows where to do what while we sat there for four hours attempting to get this
document finished, and it finally was finished.18

The crucial meeting at the Villa d’Este on Lake Como outside Milan took
place in October 1982. Marcia Meldrum has listed the five key people pre-
sent. They were becoming familiar to one another following the conferences
in Florence and Venice.

Anesthesiologist Mark Swerdlow, Stjernswärd’s chief consultant, who had founded

the first formal pain organization, the Intractable Pain Society, in Manchester
in 1967; oncologist Vittorio Ventafridda, the energetic pain specialist at Italy’s
National Cancer Institute, whose efforts had brought the WHO group to Milan, his
home city; palliative care physician Robert Twycross, who had conducted innovative
drug research studies for Cicely Saunders at St. Christopher’s Hospice in London
in the 1970s; neurologist Kathleen Foley, who had published the first taxonomy of
cancer pain syndromes and who had been trained in pain research at Memorial
Sloan Kettering Cancer Center in New York; and pharmacologist Anders Rane of
Stockholm.17

The group was becoming very focused on the global scale of the problem as-
sociated with cancer pain relief. There was a lack of medical education on the
subject; a wariness of clinicians in engaging with the use of strong opiates;
and major barriers that existed in laws and established procedures that com-
bined to restrict access to appropriate medication in many parts of the world.
On the back of these efforts, WHO representatives launched an interna-
tional initiative to remove legal sanctions against opioid importation and its
use, relying on national coordinating centres to organize professional educa-
tion and to disseminate the core principles of the ‘pain ladder’. The WHO
programme met with only partial success, however. Opioid consumption be-
tween 1984 and 1993 rose dramatically in 10 industrialized countries, but
showed much smaller increases in the rest of the world,19 and significant dif-
ferences in the pattern and the extent of opioid use were seen to continue
within and between global regions.4
Nevertheless, the interest of WHO raised further debate about the rela-
tionship between palliative care and oncology. It was increasingly recog-
nized that curative care and palliative care were not mutually exclusive and
that as long as few options for curative oncological treatment existed for
many patients in the developing world, the allocation of resources should
shift towards a greater emphasis on palliative care.20 Cancer pain was coming
to be defined as a public health issue and, as that occurred, the scope to
widen involvement—​beyond the immediate world of hospice—​was in turn
opening up.
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Researching the new model of care 125

Researching the new model of care

The rise of hospice and palliative care in a distinctly modern guise took place
against a backdrop of a modest but growing clinical, educational, and re-
search interest.21 For Cicely Saunders, this effort was about establishing the
modern science and art of caring for patients with advanced malignant dis-
ease. She focused her attention on patients in the final stages of cancer, es-
pecially those with the most complex problems, and she played a key role in
defining a new knowledge base of care for those dying from malignancies.
Her writings relied heavily on individual patient experiences, which she was
assiduous in collecting.22,23
She also inspired those around her to attend to the business of research in
the newly opened St Christopher’s Hospice. Here she stuck to the maxim of
a ‘middle way’ between too much and too little treatment. St Christopher’s
Hospice sought to establish itself as a centre of excellence in a new field, giving
equal weight to clinical care, education, and research. In the early days, it
was associated with some major clinical and organizational studies that did a
great deal to advance the field.
Research took place on the science of pain control and the underlying
pharmaco-​k inetic mechanisms at work in the administration of strong opi-
ates. This began with the close scrutiny of the methods of pain relief favoured
within the early hospices and terminal care homes, in particular the use of the
so-​called Brompton Cocktail.24 This had been gaining popularity through-
out the twentieth century and had appeared in print for the first time in the
1950s—​a mixture of morphine hydrochloride, cocaine hydrochloride, alco-
hol, syrup, and chloroform water, but with many local variants and names.
Such mixtures had become widely adopted and were made available for the
patient to drink on demand, or at regular intervals. In 1952, the Brompton
Hospital had produced its own supplement to the National Formulary and
the mixture appeared in print for the first time under the name Haustus
E. (Haustus meaning a draught or potion, and E. perhaps elixir).
◆ Morphine hydrochloride 1/​4 grain
◆ Cocaine hydrochloride 1/​6 grain
◆ Alcohol 90 per cent 30 minims
◆ Syrup 60 minims
◆ Chloroform water to 1/​2 fl. oz

This version was then listed in Martindale’s Extra Pharmacopoeia in 1958. In

1976, it had appeared in the British National Formulary and gradually it had
come to be known by several different names: Brompton Cocktail; Brompton
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126 To Comfort Always

Mixture; Mistura euphoriens; Mistura pro moribunda; Mistura pro eutha-

nasia; Saunders’s Mixture; Hoyle’s Mixture. Indeed, when the first modern
hospices opened in the United Kingdom, they too adopted their own nomen-
clatures, as at Sheffield where there was St Luke’s mild, then St Luke’s moder-
ate, followed by St Luke’s ‘individual’. As the use of the mixture proliferated,
its contents became more variable. The alcohol could take the form of gin,
whisky, or brandy, and might be included in various quantities according to
preference. A phenothiazine began to be added, either prochlorperazine or
chlorpromazine, for both antiemetic and sedative purposes. Further afield in
France, there is evidence that an antihistamine, such as promethazine, was
also being included in what were then called ‘lytic cocktails’.25 Above all,
some practitioners in the United Kingdom favoured diamorphine over mor-
phine; some even dropped the cocaine, and used morphine and diamorphine
together in the mixture.26

Robert Twycross and the Brompton Cocktail

In her early writings, Cicely Saunders had been eager to promote this rather
exotic mixture, but it was the St Christopher’s research fellow Robert Twycross
who set out to scrutinize the potion in detail in what became a series of clas-
sic studies, the first of their kind undertaken in the hospice setting. Twycross
first met Cicely Saunders in 1963. The following year, while still an under-
graduate at Oxford University, he had created the Radcliffe Christian Medical
Society simply to give a pretext to invite her to speak in Oxford. Then five
years later in 1968, he received an invitation to join her team at the newly
opened St Christopher’s. He declined the offer, however, in favour of com-
pleting his Membership of the Royal College of Physicians, and it was not
until 1971 that he finally went as a clinical research fellow to the hospice. He
describes the events as follows.
There was an international conference organised by the SCM, the Student Christian
Movement, which was in Bristol in the first few days of 1963, which was the big
freeze-​up. It froze on Christmas Eve and it continued freezing for a couple of
months. And we somehow managed to get to Bristol despite the amount of snow
between here and there. And in this international student conference, in addition to
the keynote addresses and that sort of thing, there were workshops. And one series
of workshops was on ‘Health and Healing’ and it was groups—​group discussion—​
and there were sufficient senior members to have a senior member sitting in, I think,
with each discussion group. And the senior member in the group I was in happened
to be Cicely Saunders. And obviously she said a few things which happened to reso-
nate with me—​t hat was why I arranged this meeting at the medical school, in Osler
House. So, less than eighteen months later, Cicely Saunders came to speak on ‘The
Management of Pain in Terminal Cancer’. That meant that I went into her black
book as a doctor, or a future doctor, who might well be interested in hospice care.
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Researching the new model of care 127

And that meant that a couple of years after I qualified, which must have been some
time in 1968, she wrote and said would I be interested in applying for a Clinical
Research Fellowship, and I wrote back saying, ‘Well, it’s very nice of you, but I’ve
decided to take my MRCP [Member of the Royal College of Physicians], so I’ve got
to finish that.’ And I sort of forgot about it. And then a couple of years later, when the
Research Fellow they appointed died tragically, I think within two years of taking
up his post, I got another letter in December 1970 saying would I like to consider ap-
plying for the Research Fellowship now, which I did. So that was one strand; the link
from ‘63 to the letter in December 1970. I was following a typical medical career …
But after House jobs, when I was going for Registrar posts, a little voice inside would
say, ‘That’s a step further away from St Christopher’s, that’s a step further away from
St Christopher’s.’ And it would just flash out of the sub-​conscious and recede again.
So there must have been something going on down there, so that when this letter
came, the famous letter in December 1970: ‘Would you like to consider applying for
the Clinical Research Fellowship?’ I read the letter twice and gave a laugh to myself
and said, ‘Yes.’ And obviously there was an interview and that sort of thing and
I came into the post in March … March 1st, 1971.27

There, continuing the early research initiated by the late Dr Ron Welldon,
Twycross subjected the Brompton Cocktail to unparalleled clinical and sci-
entific scrutiny. Over the next few years, his work focused on a number of
areas: standardization of the mixture; the relationship between the active
constituents and the vehicle; the storage properties of the mixture; the role of
cocaine within it; and also the relative efficacy of the morphine and diamor-
phine. Indeed, between 1972 and 1979, Twycross produced 39 publications on
these and related themes.
In his 1973 paper ‘Stumbling blocks in the study of diamorphine’, which
appeared in the May issue of the Postgraduate Medical Journal, he reported
on the limited shelf life of the drug in solution; its potency ratio vis-​à-​vis mor-
phine; the lack of research into its oral administration; the insensitivity of
current assays; the determinants of undesirable side effects; and between-​sex
comparisons of metabolic handling.28 The following year, in a paper written
with colleagues from the Epsom Hospital Laboratories, he began to advance
the case for the oral administration of strong narcotics, demonstrating from
a study of urinary excretion that ‘an orally administered solution of diamor-
phine hydrochloride is completely absorbed by the gastrointestinal tract, but
a solution of morphine sulphate is only two-​thirds absorbed’.29 This differ-
ence, he suggested, could be allowed for in the dosage.
In addition, in 1974, Twycross reported on a survey of 90 teaching and dis-
trict general hospitals in the United Kingdom that showed marked variation
in the composition of what he was now calling ‘elixirs’ for the relief of pain
and suffering in terminal cancer. He welcomed, therefore, the introduction of
a standard diamorphine and cocaine mixture to the British Pharmaceutical
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128 To Comfort Always

Codex, but raised questions about its ‘keeping’ properties. Another issue con-
cerned the acceptability to patients of a mixture that might be experienced
as either extremely sickly or unacceptably alcoholic. Above all, the paper
pointed to the need to ‘evaluate objectively the contribution of cocaine in the
pharmacological effect of the mixture’.30
Across the Atlantic, others were being influenced by the British hospice
movement’s adoption of the Brompton mixture, as well as the developing ideas
of Cicely Saunders on the nature of pain. In Canada, Balfour Mount, Ronald
Melzack, and colleagues began a series of studies at the newly opened pallia-
tive care unit in Montreal. Early descriptions suggested that ‘the Brompton
mixture provides convenient and uniform pain control without important
adverse effects’.31 It was found that the mixture relieved the pain of 90 per cent
of patients in the palliative care unit and 75–​80 per cent of those in the general
wards and private rooms, an interesting sidelight on the added benefits of the
palliative care setting. It was concluded that the results were consistent with
the gate-​control theory of pain, and that the Brompton mixture ‘does not
act on only a single dimension of pain but has a strong effect on the sensory,
affective, and evaluative dimensions together’.32 So far, it seemed, the trad-
itional elixir, albeit with greater specificity as to its makeup, had survived the
transition from old-​style care of the dying to the new world of palliative care.
Then an important breakthrough came in two papers published by Robert
Twycross in 1977. The first appeared in the journal Pain.33 Here, a controlled
trial of diamorphine and morphine was reported, in which the two drugs
were administered regularly in a version of the Brompton mixture contain-
ing cocaine hydrochloride in a 10 mg dose. A total of 699 patients entered the
trial and, of these, 146 crossed over after about two weeks from diamorphine
to morphine, or vice-​versa. The previously determined potency ratio of 1.5:1
was used. In the female crossover patients, no difference was noted in relation
to pain or other symptoms evaluated, but male crossover patients experienced
more pain and were more depressed while receiving diamorphine, suggest-
ing that the potency ratio was lower than expected. Twycross concluded that
if this difference in potency is allowed for, then morphine is a satisfactory
substitute for orally administered diamorphine, but that the more soluble
diamorphine retained certain advantages when injections were required and
doses were high.
In the second trial,34 which was reported in a letter to the British Medical
Journal, the morphine and diamorphine elixirs were compared with cocaine
added and without it. There were 45 satisfactory crossovers, and since the
trends within the morphine and diamorphine groups were similar, they were
combined for purposes of analysis. The study showed that introducing a 10
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Researching the new model of care 129

mg dose of cocaine after two weeks resulted in a small but statistically signifi-
cant difference in alertness; but stopping cocaine after this period had no de-
tectable effect. Twycross adjudged that at this dosage, cocaine is of borderline
efficacy and that tolerance to it develops within a few days.
As a result of this work, the routine use of cocaine with patients at
St Christopher’s was abandoned and, in particular, morphine was prescribed
alone in chloroform water, or together with an antiemetic where indicated.
Supporting evidence came two years later from the Canadian researchers,
who also reported a double-​blind crossover in which a standard Brompton
Cocktail containing morphine, cocaine, ethyl alcohol, syrup, and chloroform
water was compared with morphine alone in a flavoured water solution. Pain
was measured using the then recently developed McGill Pain Questionnaire,
and ratings of confusion, nausea, and drowsiness were obtained from the pa-
tients and their relatives, and nurses. The study showed no significant differ-
ence between the cocktail and the oral morphine alone; both relieved pain
in about 85 per cent of patients, with no differences in confusion, nausea,
or drowsiness. The Canadians adopted the name ‘elixir of morphine’ for the
morphine solution.35
In 1979, as one of three chapters he wrote for the important trilogy Advances
in Pain Research and Therapy, edited by John Bonica and Vittorio Ventafridda,
Twycross drew together his summative statement on the matter.36 There had
been, he suggested, a tendency ‘to endow the Brompton Cocktail with almost
mystical properties and to regard it as the panacea for terminal cancer pain’.
Generously, he allowed that if the physician is aware of the potential side ef-
fects of the main ingredients, then its use might be maintained. However, set
against this was the disadvantage to the pharmacist, the potential unpalat-
ability to the patient, the higher financial costs incurred, and the restricted
potential for the physician to manipulate the doses given. The Brompton
Cocktail, it turned out, was no more than a dressed-​up way of administer-
ing oral morphine to cancer patients in pain. It was about to depart from the
received wisdom of the new palliative care community.
It is not difficult to see the fall of the Brompton Cocktail as part of a wider
sea change in the science and art of the emerging palliative care field. We
might capture this as a shift from a ‘traditional’ mode of thinking and prac-
tice, to one that is distinctly ‘modern’ in character. Potions, mixtures, and
elixirs carry ancient associations, reaching back to earlier periods in the his-
tory of medical practice. They can be invested with mystical, or even alchem-
ical properties. Yet, their actions can be as cloudy as their appearance. The
conjoining of substances and liquids has an intuitive, even hubristic quality—​
a medicine of faith, rather than fact. At the same time, as the varying names
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130 To Comfort Always

of this particular mixture reveal, the purpose of its use was also somewhat
ambiguous. Was it intended to induce euphoria? Did it respond to, or pro-
pentiate, moribundity? Most intriguing of all, was it intended to bring about
‘easeful’ death, or actually to hasten demise?
There seems to be no doubt that the Brompton Cocktail was spoken about
euphemistically by doctors and nurses, and patients and families were aware
of this. Such ways of communicating are hard to abandon—​w itness the
McGill term ‘morphine elixir’ for a mixture that contained only the drug
itself and water. However, in general, this did not continue. Instead, since the
demise of the Brompton Cocktail, an allegedly more rational approach was
adopted to the management of pain. Yes, drugs came to be used in combin-
ation (often in palliative care for purposes for which they were not licensed),
but titration became the important watchword, something much harder to do
with the varied ingredients of the cocktail.
Encouraged by Cicely Saunders at St Christopher’s Hospice and mentored
by Duncan Vere at the London Hospital, Robert Twycross saw the implica-
tions of all this. He ‘deconstructed’ the Brompton Cocktail. As his work was
disseminated, it became clear that simpler, more predictable means of pain
control could be adopted, that narcotics could be used safely, and in particu-
lar, that morphine was just as effective as diamorphine. Combining energies
from Britain, North America, and Europe, a new field of pain medicine and
research was opening up, a field with which the particular contribution of Dr
Robert Twycross will always be associated.24
In 1976, Twycross moved to Oxford to lead his own NHS hospice. Here he
continued his research into pain with new fellows working under his direc-
tion; first Dr Geoffrey Hanks and later Dr Claud Regnard.

Well Geoff was brought in to continue the work on morphine and again there was a
whole lot of descriptive work, much of which never got published in fact, a whole lot
of descriptive work, because a lot of mine was descriptive. If you’re doing controlled
trials you’ve got time to fill in with descriptive work; the use of morphine, you know;
what happens to the dose if you have someone on morphine for two years, you know;
maximum dose, all that sort of thing; dose ranges; concurrent use of other drugs,
and all that sort of thing. So he did that and he also dabbled in a number of con-
trolled trials, some of which came to a successful conclusion and some of which
didn’t because of a lack of suitable patients. He was enticed away to the Marsden. He
was undoubtedly the right person for the right job; someone who’d previously been
in pharmaceutical medicine and had the right qualifications and no doubt could
fight his corner at the Royal Marsden. I don’t think anyone else at that time could
have successfully established a palliative care unit in the Royal Marsden.
Claud, again, came to do more work on morphine, but his other activities tended
more and more towards lymphoedema, and in 1985, at his instigation, we set up the
British Lymphology Interest Group and the first inaugural general meeting was in
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Total pain 131

the day centre dining room, which was before we had the Study Centre. We had an
inaugural day conference of the British Lymphology Interest Group, which is an-
other interesting aspect of the whole story; how lymphoedema has been grafted on
at a number of hospices. He went to Newcastle, in ‘86.28

By the early 1980s, Twycross was making an increasing name for himself, not
so much in research, but for his teaching and textbook publications. He took
on the role of abstracter and synthesizer of published work, and his joint texts
with Dr Sylvia Lack, who trained in palliative medicine at St Joseph’s before
moving to the Connecticut Hospice, became widely read as the field grew
and the demand for training material expanded. He reduced his clinical com-
mitments at Sobell House, Oxford, and became a clinical reader in palliative
medicine at the University. As we have seen, by now he had a major interna-
tional role, too, and was a key architect of the WHO pain ladder.

Total pain
If Twycross demolished the prevailing method of relieving pain, Saunders
created a radically new approach to conceptualizing it.37 A striking feature of
Saunders’s early work was its articulation of the relationship between physical
and mental suffering. This reached full expression with the concept of total
pain, which was taken to include physical symptoms, mental distress, social
problems, and emotional difficulties. There can be little doubt that when
Cicely Saunders first used this term she was in the process of bequeathing
to medicine and healthcare a concept of enduring clinical and conceptual
interest. The concept emerged from her unique experience as nurse, social
worker, and physician—​t he remarkable multidisciplinary personal platform
from which she launched the modern hospice and palliative care movement.
It also reflected a willingness to acknowledge the spiritual suffering of the
patient and to see this in relation to physical problems. Crucially, it was tied
to a sense of narrative and biography, emphasizing the importance of listen-
ing to the patient’s story and of understanding the experience of suffering in
a multifaceted way. This was an approach that saw pain as the key to unlock-
ing other problems, and as something requiring multiple interventions for its
resolution.
The inseparability of physical pain from mental processes is alluded to by
Cicely Saunders even in some of her earliest publications. In 1959, she could
note: ‘Much of our total pain experience is composed of our mental reaction
…’38 At this stage we have the idea of total pain in a weaker, more preliminary
sense than was to emerge within a few years. Here it is a general descriptor,
indicating that there may be several layers that have to be understood to have
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132 To Comfort Always

a full grasp of the problem of pain in the terminally ill. The specific context
of this understanding is the stage of illness ‘when all curative and palliative
measures have been exhausted’.22 This moment, at which modern medicine
typically states that ‘there is nothing more to be done’,39 thus becomes the
starting point for an emergent medicine of terminal care, central to which is
a multifaceted understanding of pain. This is a medicine concerned also with
the meaning of pain. A cry simply to be rid of pain is not worthy of humans,
who must question the pain that is endured and seek meaning in it. Seen this
way, pain breaks the yoke of material values and allows the finest human sen-
timents to shine through.
In this sense, pain has become something indivisible from both the body
and the wider personality. Therefore, it can be observed that ‘the body has a
wisdom of its own and will help the strong instinct to fight for life to change
into an active kind of acceptance that may never be expressed in words’.40 The
following narrative, from a 1964 paper in Nursing Mirror, describes for the
first time the key elements of what came to be viewed as ‘total pain’. It is about
Mrs Hinson, a patient cared for at St Joseph’s Hospice, Hackney. It was later
quoted extensively within the palliative care literature, becoming emblematic
of the whole principle of care within the emerging specialty.
One person gave me more or less the following answer when I asked her a question
about her pain, and in her answer she brings out the four main needs that we are
trying to care for in this situation. She said, ‘Well doctor, the pain began in my back,
but now it seems that all of me is wrong.’ She gave a description of various symptoms
and ills and then went on to say, ‘My husband and son were marvellous but they were
at work and they would have had to stay off and lose their money. I could have cried
for the pills and injections although I knew I shouldn’t. Everything seemed to be
against me and nobody seemed to understand.’ And then she paused before she said,
‘But it’s so wonderful to begin to feel safe again.’ Without any further questioning
she had talked of her mental as well as physical distress, of her social problems and
of her spiritual need for security.41

That same year, 1964, in a paper for The Prescribers’ Journal, the phrase ‘all of
me is wrong’ was used more formally to introduce the concept of total pain
in its stronger and definitive sense—​to include physical symptoms, mental
distress, social problems, and emotional problems.42 Although often over-
looked by writers of subsequent publications, this is the foundational piece
in which total pain is fully described by Saunders for the first time. In a 1966
paper, a patient being admitted to St Joseph’s used the phrase, ‘it was all pain’
and the author observed that this ‘ “total pain” calls us to analyse, to assess
and to anticipate’.40 As early as 1959 she had acknowledged that pain in this
multifaceted sense could not be relieved solely through analgesics.39 Likewise,
it posed greater challenges than could be overcome by the technologies of
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Total pain 133

regular administration for pain relief. By 1967, a new conceptualization of

pain had emerged: ‘Pain demands the same analysis and consideration as an
illness itself. It is the syndromes of pain rather than the syndromes of disease
with which we are concerned.’43
In the early years at St Christopher’s Hospice, the concept of total pain was
further elaborated by researchers, clinicians, and by patients themselves. It
entered into the fabric of daily life at the hospice and became a defining fea-
ture of its philosophy and approach. By 1985, when Cicely Saunders retired
from the full-​time role of medical director at St Christopher’s to become its
chairperson, palliative medicine was just two years away from specialty rec-
ognition in the United Kingdom. It is not unreasonable to view the concept
of total pain as a major element within the conceptual armamentarium of the
new discipline. Indeed, it may well be judged as one of the most innovative
concepts yet to emerge from the field of palliative care.
When considering the writing of Cicely Saunders on total pain and related
subjects, several publications in the period 1968–​1985 merit our attention. The
notion that chronic pain presents particular challenges to the clinician is reg-
ularly stated in her work from this time. In particular, it is seen as a problem
on the level of meaning, for such pain can be timeless, endless, meaningless,
bringing a sense of isolation and despair.44 This is in stark contrast to the acute
pain, familiar in teaching hospitals, which so often is seen as purposive—​for
example, in the diagnostic process as an indicator of problems, or postopera-
tively as a staging post on the road to recovery. An important chapter pub-
lished in 1970 describes chronic pain as ‘not just an event, or a series of events
… but rather a situation in which the patient is, as it were, held captive’.45 In
terminally ill patients, a major challenge is to avoid the onset of such pain by
active strategies of prevention, in particular the regular giving of strong anal-
gesia in anticipation of, rather than in response to, the onset of pain. We see
the maxim oft repeated, ‘constant pain needs constant control’. At the same
time, the value of listening is also emphasized, as in the patient who said ‘the
pain seemed to go by just talking’. If terminal pain can be regarded as an ill-
ness in itself, so the use of drugs is not simply a matter of technique but also
the expression of understanding between one person and another.
Crucially, Saunders saw the relief of pain as the most vital component in
confronting the issue of euthanasia—​pain in the final stages of cancer had
attracted the imagination of the public and was a regular theme in public
debate.46 It was therefore important to demonstrate to the public that pain
could be avoided. The use of moderate doses of strong opiates was a core fea-
ture of this. For example, in the 1970s, only 10 per cent of patients cared for at
St Christopher’s Hospice needed a dose of more than 30 mg of diamorphine.
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134 To Comfort Always

Moreover, it was found that by providing physical relief, opportunities then

arose for communicating with the patient on a much deeper level, not least on
the complex issue of what to disclose about the prognosis.
By 1973, it had become possible to refer in published writing to some of the
research on pain being carried out at St Christopher’s Hospice.47 Pain was
acknowledged to be a problem still inadequately tackled; whether in the pa-
tient’s own home, or in a busy general hospital ward. One part of the problem
was that the constant pain of terminal cancer was not alleviated by earlier
teachings; to the effect that doses of narcotics should be spaced as widely as
possible to avoid the onset of dependence. Fears about dependence also lim-
ited the availability of morphine and diamorphine in some countries, and
double-​blind trials at St Christopher’s were designed to shed light on the rela-
tive merits of the two drugs. Another problem was that of titration, largely
seen as a subjective process. However, by 1976 it was possible to refer to the
use of radioimmunoassay as a method for measuring the level of drugs in the
body, thus allowing Robert Twycross’s research to show that the use of opiates
with terminally ill patients does not need to continually escalate and might
even decline.48 By now, it was becoming clear from the work of Twycross
that there was no observable clinical difference between morphine and dia-
morphine, although the latter was more favoured for injection because of its
greater solubility.
Evidence of growing recognition for Cicely Saunders’s approach can be seen
in the invitation extended to her as well as to Twycross, to contribute to one of
the volumes on research edited by international pain experts John Bonica and
Vittorio Ventafridda, published in 1979, and based on presentations at the
1978 cancer pain symposium in Venice.49 In the resulting chapter, she used
patients’ paintings and drawings, case histories, and research in combination
to develop her argument. A series of patients’ pictures was particularly tell-
ing. They show the feeling of being impaled by a red-​hot iron, of total isolation
from the world, of the implacable heaviness of pain or, in one case, the feeling
that ‘I am a scrap heap’. Another woman who had experienced a year of re-
lentless pain from carcinoma of the pancreas drew it as a small rodent eating
into the side of a tree trunk; the few traces of green at the top were described
as ‘my life trying to get through’. By attention to all aspects of such pain, the
possibility of its relief came in sight. So, rather unusually, Cicely Saunders
was able to state: ‘Vital signs in a ward specializing in the control of terminal
pain include the hand steady enough to draw, the mind alert enough to write
poems and to play cards, and above all the spirit to enjoy family visits and
spend the last weekends at home.’ She went on to argue that good care of this
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Total pain 135

kind could also be delivered in a variety of settings and was not dependent
upon the availability of an inpatient hospice facility.
At the beginning of the 1980s, another substantial chapter appeared from
the pen of Saunders, this time in Mark Swerdlow’s collection The Therapy of
Pain.50 Here she cited examples from studies conducted between 1954 and
1978 that gave evidence of unrelieved terminal pain. By contrast, data on
3 362 patients cared for by St Christopher’s between 1972 and 1977 showed
that only 1 per cent had continuing pain problems, although more than three-​
quarters presented to the hospice with such problems. The achievement of
these results, however, could occasion the phenomenon of ‘staff pain’, result-
ing from prolonged exposure to the suffering of patients and families facing
death. Although the need for formal staff support was acknowledged and de-
scribed, it was argued that ‘the resilience of those who continue to work in
this field is won by a full understanding of what is happening and not by a re-
treat behind a technique’. The same paper made the important point for those
countries in which diamorphine was unavailable, that morphine was now the
preferred analgesic of the two. It also noted that the use of mixtures contain-
ing alcohol and cocaine should be discontinued. Both pronouncements fol-
lowed the work of Robert Twycross and Ronald Melzack. Three years later,
having established the preference for morphine, it was possible to discuss new
techniques for its administration through both slow-​release formulation and
the use of the syringe driver.51

The syringe driver

In the 1960s, electrically powered syringe pumps were used in medicine
mainly to give intravenous cytotoxic drugs. In the United Kingdom, it was
Dr Patrick Russell who in 1979 first described the use of the Graseby syringe
driver to deliver continuous subcutaneous infusion (CSCI) in the hospice
context—​for pain and symptom relief. The idea was that by loading pain re-
lieving and other drugs into an electric pump attached to a butterfly needle
and inserted under the skin, it would be possible to deliver uninterrupted
pain and symptom control over several hours to the patient without the need
for regular injections. The syringe driver, used in this way, came to be viewed
as almost indispensable to British palliative care practice, although it was not
universally adopted elsewhere.52
Its inventor was the British bio-​engineer Martin Wright, who had long
been interested in innovative continuous infusion devices and had been ap-
proached by a paediatrician who wanted a portable infusion device suitable
for use by her thalassaemic patients. Following the success of the syringe
driver in thalassaemia, Wright (who also invented the peak flow meter) began
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136 To Comfort Always

to consider other applications for the pump. It was soon used to good effect in
postoperative analgesia, insulin dependent diabetes, and the treatment of my-
asthenia gravis. But it was in the management of pain and other symptoms in
palliative care that it was about to find its definitive and most enduring role;
and this came about almost by chance.
Wright’s own general practitioner, Patrick Russell, was a neighbour and
family friend. Russell was also medical officer at Michael Sobell House, a hos-
pice in the grounds of Mount Vernon Hospital, Northwood in the south of
England. During one of their neighbourly discussions on medicine and pa-
tient care, Wright suggested that Russell might like to try using the syringe
driver to administer CSCI to those hospice patients unable to take oral medi-
cation. Russell was keen to try it. In the first attempt, the syringe driver was
used on a cachexic, nauseated man with lung cancer. As his pain resolved, the
improvement in his quality of life was dramatic and he remained mobile until
the day of his death. However, for Russell, it was another case that particularly
convinced him of the syringe driver’s worth.

… the one that was the most memorable for me was a young woman with advanced
ovarian cancer who was clearly dying and she had a family holiday organised in
Bognor with her two young children and her husband and she was desperate to go
on this, but her pain control needs were very great. So we thought, well, we’ve got
her on a syringe driver … But how can we organise that? So in the end, of course
this was in the very early days, we rang a health centre in Bognor and told them we’d
got a patient coming down on holiday … with a syringe driver who was having,
I can’t remember what dose of diamorphine in 24 hours now. They were a bit taken
aback because they’d never heard of it, but we managed to persuade them that they
would cooperate. The next problem was what to do about the fortnight’s supply of
diamorphine … in fact, the police station cooperated and held it for us. So, off she
went down to Bognor and the district nurses or practice nurse, changed the syringe
driver every day and she came back really overjoyed with her holiday because she
knew time was short and it had meant so much to her to have this holiday with those
children … and that’s stayed in my mind ever since. For me that was the moment
when I knew this had a big future.53

Pleased with the results they were having with the syringe driver at Michael
Sobell House, Russell wrote a letter to the British Medical Journal (BMJ) de-
scribing their approach. Published on the 9 June 1979 and titled ‘Analgesia in
Terminal Malignant Disease’,54 it took the form of a response to a BMJ article
by Drinkwater and Twycross55 from earlier that year, advising that the oral
route could achieve effective pain relief in almost all cases. Russell was in
agreement with Drinkwater and Twycross and with the view that there was
no longer a place for the Brompton mixture in modern palliative care, but
he went on to describe the use of the syringe driver for the small number of
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Total pain 137

people in whom the oral route proved impossible. He suggested the device
could be used to administer drugs by the subcutaneous or intramuscular
routes and that it was simple to use, effective, reliable, foolproof, and being
small and lightweight, allowed complete mobility.
The UK hospice community soon expressed great interest in this new device.
Russell and the medical director of Michael Sobell House, Robert Dickson,
were asked to attend a national hospice conference to report their use of the
syringe driver. Unfortunately, the chairman Eric Wilkes was unaware of the
arrangements and no space was made available in the programme. Wilkes
advised that those who wanted to know about the syringe driver would have
to come back early from lunch and was perplexed when he returned to find
a large crowd of people had gathered to find out more about what seemed to
him merely a gimmick. The use of the syringe driver in palliative care proved
to be more than a passing fashion however, and Russell’s letter to the BMJ
became the first of many publications on the use of this approach to symptom
control. By 1989, a survey of UK palliative care providers found that most
undertook CSCI in the management of symptoms and that Wright’s syringe
driver was used by the overwhelming majority (96 per cent).56 Twelve years
later, another study found this was still the case, with only a handful of units
using any other devices.57
The syringe driver had become perhaps the central technology in
the practice of British palliative care. It was soon to be matched by the
emergence of new formulations of the key palliative care drug for pain
relief—​morphine. 58 In August 1979, a short letter was published in the
British Journal of Clinical Pharmacology, in which researchers at Bard
Pharmaceuticals, Aberdeen, reported ‘formulation studies’ performed by
Napp Laboratories, which had resulted in the development of controlled
release 10mg morphine sulphate. 57 A method had been found to bind
the morphine to a wax-​like substance that would slowly break down in
the body, thereby affording continuous symptom relief over an extended
period. Controlled release morphine formulations could be used when
pain is constant. Their administration would reduce the number and fre-
quency of doses needed by the patient. Controlled release could also com-
plement more standard immediate release formulations, allowing immedi-
ate release morphine to be used for ‘breakthrough’ pain once a person was
established on a sustained release product. The use of such tablets was a
significant departure from the ‘as required’ mode of administering mor-
phine, but an early analysis of the use of sustained release tablets in a hos-
pice setting reported that such preparations brought an improved quality
of life for patients and care givers. 59
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138 To Comfort Always

There was now a growing confidence within the world of hospice and pal-
liative care that the complex and multilayered symptoms associated with
terminal pain could be attended to effectively by a combination of the well-​
informed use of narcotics and a sophisticated understanding of the emo-
tional, spiritual, and social problems that might also occur for those with
terminal illness. By the mid-​1980s, total pain had become firmly established
as a central concept within the emerging palliative care specialty and was
proving a useful concept in clinical work, in teaching, and (to a lesser extent)
in research. Interesting then that, in 1983, Cicely Saunders published a small
volume that contained poems, prayers, and other writings selected to help
those facing life-​threatening illness.60 Her selections included work by con-
centration camp survivor and founder of logotherapy, Viktor Frankl; theo-
logians Teilard de Chardin and Olive Wyon; English writers John Bunyan
and D. H. Lawrence; as well as some patients from St Christopher’s Hospice.
It reflected important truths learned in a quarter century of close attention to
the suffering of dying patients. It was entitled Beyond all Pain.

Burgeoning research and service development

This growing momentum for the study of pain was paralleled in the early
1960s with studies by Colin Murray Parkes on bereavement,61 and by the mid-​
1960s, with research papers by Dr Eric Wilkes on terminal cancer at home.62,
63
These works did much to raise interest in the problems of care for the dying,
although it was still the case, as the psychiatrist John Hinton noted, that ‘the
large number of articles in which remembered experience is distilled into
advice on the management of dying awesomely overshadows the few papers
attempting to measure the degree of success or failure of treatment’.64 Over
time, however, there was a shift in publications about the care of the dying
and a research-​based approach to improving care at the end of life began to be
more visible.65 Within a few years, there was also sociological interest in these
issues, found in ethnographic studies of the care of the dying in American
hospitals,66 and in surveys of bereaved relatives who were asked about the
experiences of the deceased person in the last year of life.67
Evaluation research, focused on understanding the hospice service as a
whole, began at St Christopher’s even before the first patient was admitted.
The psychiatrist Colin Murray Parkes built up over time a cohort of cases
consisting of 276 patients who died of cancer in two London boroughs, 49
of whom were still under active treatment at the time of death. He found
much unrelieved pain, whether the patient died in a hospital or at home, and
as patients entered the study, he was able to show that people with serious
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Burgeoning research and service development 139

pain problems were referred from the start to the hospice and their pain was
largely relieved.68 The study was repeated 10 years later as part of the ongoing
evaluation of the hospice’s work. Although pain and symptom control im-
proved in the hospital setting over time, psychosocial needs and continuity of
care continued to be better approached in the hospice.69 Parkes describes the
overall approach.

We had to do research because that was the only way to sort of underpin the work.
For the first five or six years at St Christopher’s very little was published. I mean we
were doing some drug trials, we were doing various things, but we were developing
skills and techniques and ideas which we didn’t dare to test out in any sort of em-
pirical way because we hadn’t yet got them right. We needed to develop a model that
seemed to be working before we started testing it. And I think there’s an important
lesson here: I think if we’d been in too much of a hurry to do the evaluations, the
evaluations would probably have been negative and it’s quite possible that the entire
hospice movement would have been discredited. It’s always a danger if you’re enthu-
siastic for something that you will, you know, well everybody says, ‘Well, prove it’,
you know, ‘You’ve got to evaluate.’ And I agree with evaluation. I think we’ve got to
evaluate, but we also have to acknowledge that, in this area, evaluation is actually
very difficult. It’s not a simple matter … there’s a simple idea that you can get simple
answers to complex questions, but where evaluation of anything as subtle as the
care of the dying is concerned, with its multiform different aspects, it would be very
surprising if there were a simple way of assessing the value of anything as complex
as the quality of life of a person who’s dying.
I think that the fact that the first few trials were all sort of drug trials and trials
of pain relief enabled the hospice to get off to a good start because in all of these,
the results of those studies were very positive in showing how well the hospice was
doing. I mean, my own studies, one of the studies I carried out was a comparison
of relatives of patients who’d died in a hospice with relatives of patients who’d died
from cancer in other hospitals in the vicinity. And in the early 1970s and late ’60s,
there were very big differences between them, largely due to the fact that in other
hospitals in the vicinity people were still dying in agony. The pain was so bad that
not only the patients but the families too were very depressed and so our measures
of depression which correlated fairly highly with patients measures of pain were
reflections of that issue. Once we got the pain relieved, the depression in the family
improved. At that time we were not showing big differences between families on
post bereavement outcome, and that sort of thing. It was only a few years later, when
we got really sophisticated bereavement counselling going, that we were able to show
differences between helped and unhelped groups of bereaved people.70

Planning and change

Hospital support teams for terminal care (as they were then called) were pio-
neered in the United Kingdom from 1976, when the first one opened at St
Thomas’s Hospital. A notable early casualty was reported in the BMJ,71 but
their subsequent development was given impetus by departmental guidelines
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140 To Comfort Always

published in 1987. Between 1982 and 1996, the number of hospitals with either
a multidisciplinary palliative care team or a palliative care clinical nurse spe-
cialist grew from five to 275.72 A review of the efficacy of hospital-​based pal-
liative care teams noted their continuing evolution and gave support to their
work as well as encouragement for further evaluative studies.73 Such teams
varied widely in character, but they became the principal interface between
oncologists and palliative care specialists in the hospital setting.
In Britain, this was an era of what has been called ‘emotional planning’ in
hospice and palliative care services.73 Ideas and proposals for new services
often came forward at the local level, sometimes despite (rather than be-
cause of) the support of local health bureaucrats. Only gradually did formal
guidance begin to appear, sometimes hastily cobbled together in the face
of a rising tide of local hospice developments led by specially formed chari-
ties. A landmark of policy recognition came in 1980 with the report of the
Working Group on Terminal Care produced by the Standing Sub-​Committee
on Cancer of the Standing Medical Advisory Committee.74 It was known
thereafter as the Wilkes Report, after its chairperson, who a decade earlier
had founded St Luke’s Hospice in Sheffield and gone on to become a professor
of community medicine.
The Wilkes Report was a response to the significant developments that
had taken place since the report two decades earlier by H. L. Glyn Hughes.
Notwithstanding his role as a hospice founder within his own locale, Wilkes
gave a cold shower to expansionist tendencies among hospices. The report
argued that these were neither affordable (in cash) nor sustainable (in person-
nel), but rather the focus should be on encouraging the principles of terminal
care throughout the health service, with good coordination between the sec-
tors. If prescient in orientation, it did little however to stem the immediate
tide of enthusiasm for the creation of new hospice organizations. The decade
that followed was unprecedented for hospice growth.
Two major UK cancer charities were also important drivers of change at
this point.
The variously named ‘Macmillan’ organization had begun in 1911 to support
those affected by cancer. Until 1964, it was directly led by its founder Douglas
Macmillan, and its main role was in distributing funds to patients and fami-
lies affected by the disease. In the mid-​1970s, it underwent a period of un-
precedented expansion, becoming increasingly involved with palliative care
and supporting training programmes, specialist professional posts, and aca-
demic positions, as well as capital and service developments. In 1975, the first
Macmillan nurses were appointed to care for dying cancer patients at home
and later in hospital. It also opened its first cancer care unit in Christchurch,
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Burgeoning research and service development 141

Dorset. Under the leadership of Major Henry Garnett, the charity went on
to develop education programmes in cancer care and advanced pain control
(1980), and then introduced the concept of Macmillan-​f unded doctors (1986).
The engagement of what was fast becoming one of Britain’s major charities (of
any kind) was a major boost to palliative care and a key source of funding for
medical positions in the emerging field.
Established in 1948, the Marie Curie Memorial Foundation had three ob-
jectives: a nursing and welfare service for patients in their own homes; the
provision of residential nursing homes; and the encouragement and funding
of scientific learning. As we have seen, it was also instrumental in 1952 in
conducting a major survey of need among people with cancer. In the 1980s,
the Marie Curie nursing homes underwent a transition to become specialist
palliative care centres, and the charity supported a wide range of educational
and research activities in palliative care. Under the leadership of another ex-​
military man, Michael Carleton-​Smith, Marie Curie increased its income in
10 years from £9 million to £55 million; 5 000 Marie Curie nurses were seeing
19 000 patients a year and the 11 centres had 300 beds catering for some 4 000
patients annually.
In 1987, the British government published its first official circular on ter-
minal care. District health authorities were called on to take the lead in plan-
ning and coordinating services for terminally ill people, and clear strategies
with monitoring arrangements were required for this. From 1989 onwards,
funding earmarked for hospice services was identified by central government.
By 1993, the sums involved had doubled to £43 million. Letters of guidance
were sent to health authorities explaining how they should manage their re-
lationships with independent hospices and other providers of terminal care
services. Palliative care, though still not the term of choice at this time, was
beginning to enter the fabric of the National Health Service.73 The work of
defining its clinical realm and of how it could be organized was beginning to
pay off.
A picture later emerges of hospice ideals and practices being disseminated
into other settings. By the mid-​1990s in the United Kingdom, there were over
1 000 specialist Macmillan nurses working in palliative care; approximately
400 homecare teams; and over 200 daycare and 200 hospital-​based services,
as well as some 5 000 Marie Curie nurses providing care in the home. This
meant that these services came increasingly under the purview of planners
and strategists. When the Expert Advisory Group on Cancer published its
findings (the Calman–​Hine Report) in 1995 and proposed major restructur-
ing for cancer services, palliative care was not left out. The report defined the
palliative care resources needed at the general population level (for 500 000
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142 To Comfort Always

people, two consultants in palliative care were required; 25 specialist beds;

12 full-​time clinical nurse specialists; and 200 specialist daycare places per
week) and it recommended that palliative care should be embedded within
the cancer teams and integrated with general practice.75
Other nondirect care organizations started to emerge as interest and ac-
tivity grew, and the need for more coordinated approaches to development,
planning, and service delivery were being recognized. Help the Hospices had
come into being in 1984 as a national charity to support independent hospices
by grant-​giving and lobbying activities. However, within a few years, govern-
ment perception was that the growing sector of hospice and palliative care,
including the major national charities, needed a single voice to represent it.
Amid heated debate among the various stakeholders, the National Council
for Hospice and Specialist Palliative Care Services was founded in 1991. Its
goal was to serve as a multidisciplinary body, representing the several profes-
sional groups of nurses, doctors, social workers, chaplains, volunteers, and
others that were now organizing themselves. It also served to bring together
the views of the major national charities, the independent hospice movement,
and other key players. It was a daunting task for a sector still at the ‘storm-
ing and norming’ stage of its development. Scotland followed suit with the
Scottish Partnership for Palliative Care, formed in 1991. These organizations
were to endure over time and were key in bringing the field of palliative care
practice into the world of health policy, planning, and politics.

Conditions of possibility
Over the decades described here, hospice and palliative care, and particu-
larly the medical aspects of this work, became increasingly clarified and de-
fined. There was high-​level nursing leadership from within the British hos-
pices, as well as from the associated national charities such as Macmillan
and Marie Curie. Social work perspectives became more strongly articulated
and religious care from chaplains of various faiths was seen as a core aspect
of palliative care, rather than an optional element. The role of volunteers
was emphasized in hospice organization, and beyond them sat a large work-
force of fundraisers and supporters in the wider community. The field was
evolving as a consciously multidisciplinary discipline. Total pain required
more than a response from medicine; it called on carers skilled in each of
its dimensions, who would have to work in consort to address the needs of
the whole person. To this wider, more inclusive view of palliative care, the
emerging discipline of palliative medicine could at times have an ambivalent
orientation.
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Conditions of possibilit y 143

Up until now, the emerging knowledge base of hospice and palliative care
had been demonstrated through mainstream medical, nursing, and other
professional journals, but specialist outlets also began to appear. The Pain
Research News Forum was first published in 1982, and by 1986 had evolved
into the Journal of Pain and Symptom Management. The Journal of Palliative
Care published its first issue, from Canada, in 1985. Then 1987 saw the launch
of the first UK journal—​Palliative Medicine—​to be concerned solely with pal-
liative care. Through these and other fora, a fertile ground for debate was
opening that would characterize the specialty in the years ahead. Into this
space also stepped other commentators, viewpoints, and sources of debate
and scholarship. They were accompanied by some who took a wider view of
thanatological matters, with contributions from the social and clinical sci-
ences as well as the arts and humanities. The field was growing and its reach
was expanding.
Within this wider culture of recognition, and as the 100th anniversary of
Munk’s key publication approached, important developments were taking
place internationally. There was increasing acknowledgement that the benefits
of good palliative care should not be confined to those in the affluent nations
of the world while the cancer epidemic of the developing countries also re-
quired attention. Gradually, interest in these issues was spreading throughout
many societies and cultures. The momentum for the new field was growing
and formal recognition from the medical establishment now seemed within
the grasp of its founders.

Notes
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144 To Comfort Always

10. Paterson R, Aitken-​Swan J (1954). Public opinion on cancer. Lancet (23

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17. Meldrum M (2005). The ladder and the clock: Cancer pain and public policy at
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Conditions of possibilit y 145

31. Mount BM, Ajemian I, Scott JF (1976). Use of the Brompton mixture in treating the
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July): 122–​4.
32. Melzack R, Ofiesh JG, Mount BM (1976). The Brompton mixture: Effects on pain in
cancer patients. Canadian Medical Association Journal, 115 (17 July):125–​9.
33. Twycross RG (1977a). Choice of strong analgesic in terminal cancer: Diamorphine or
morphine? Pain, 3:93–​104.
34. Twycross RG (1977b). Letter. Value of cocaine in opiate-​containing elixirs. British
Medical Journal, 2:1348.
35. Melzack R, Mount BM, Gordon JM (1979). The Brompton mixture versus morphine
solution given orally: Effects on pain. Canadian Medical Association Journal, 20 (17
February):435–​8.
36. Twycross RG (1979). The Brompton Cocktail. In: Bonica JJ, Ventafridda V
(eds.). Advances in Pain Research and Therapy, vol. 2, pp. 291–​300. New York,
NY: Raven Press.
37. Clark D (1999). ‘Total pain’, disciplinary power, and the body in the work of Cicely
Saunders, 1958–​1967. Social Science and Medicine, 49:727–​36.
38. Saunders C (1959). Care of the dying 3. Control of pain in terminal cancer. Nursing
Times (23 October):1032.
39. Saunders C (1966). The care of the dying. Guy’s Hospital Gazette, 80:136–​42.
40. Saunders C (1965). Telling patients. District Nursing (September):149–​54.
41. Saunders C (1964). Care of patients suffering from terminal illness at St Joseph’s
Hospice, Hackney, London. Nursing Mirror (14 February):vii–​x.
42. Saunders C (1964). The symptomatic treatment of incurable malignant disease.
Prescribers’ Journal, 4, no. 4 (October):68–​73.
43. Saunders C (1967). The Management of Terminal Illness. London, UK: Hospital
Medicine Publications Ltd.
44. Saunders C (1969). The moment of truth: Care of the dying person. In: Pearson L
(ed.). Death and Dying: Current Issues in the Treatment of the Dying Person, pp. 49–​
78. Cleveland, OH: The Press of Case Western Reserve University.
45. Saunders C (1970a). Nature and management of terminal pain. In: Shotter EF (ed.).
Matters of Life and Death, p. 15. London, UK: Dartman, Longman, and Todd.
46. Saunders C (1970b). An individual approach to the relief of pain. People and Cancer,
pp. 34–​38. London, UK: The British Council.
47. Saunders C, Winner A (1973). Research into terminal care of cancer patients.
Portfolio for Health 2. The Developing Programme of the DHSS in Health Services
Research, pp. 19–​25. Published for the Nuffield Provincial Hospitals Trust by Oxford
University Press.
48. Saunders C (1976a). The challenge of terminal care. In: Symington T, Carter R (eds.).
The Scientific Foundations of Oncology. London, UK: Heinemann.
49. Saunders C (1979). The nature and management of terminal pain and the hospice
concept. In: Bonica JJ, Ventafridda V (eds.). Advances in Pain Research, vol. 2.
New York, NY: Raven Press.
50. Saunders C (1981). Current views on pain relief and terminal care. In: Swerdlow M
(ed.). The Therapy of Pain. Lancaster, PA: MTP Press.
51. Saunders C, Baines M (1983). Living with Dying: The Management of Terminal
Disease. Oxford, UK: Oxford University Press.
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146 To Comfort Always

52. Graham F, Clark D (2005). The syringe driver and the subcutaneous route in pallia-
tive care: the inventor, the history and the implications. Journal of Pain and Symptom
Management 29(1):32–​40.
53. Hospice History Project: Fiona Graham interview with Patrick Russell, 8 May 2003.
54. Russell PSB (1979). Analgesia in terminal malignant disease. British Medical Journal,
1:1561.
55. Drinkwater C, Twycross R (1979). Analgesia in terminal malignant disease. British
Medical Journal, 1(6172):1201–​2.
56. Milner PC, Harper R, Williams BT (1989). Ownership, availability and use of
portable syringe drivers among hospices and home care services. Public Health,
103:345–​52.
57. Leslie ST, Rhodes A, Black FM (1980). Controlled release morphine sulphate tab-
lets: a study in normal volunteers. British Journal of Clinical Pharmacology, 9:531–​4.
58. Seymour J, Clark D (2005) Evaluation in cancer pain relief: from private to public
trouble? International Conference for Health Technology Assessment, Rome, Italy.
Unpublished.
59. Slattery PJ, Boas RA (1985). Newer methods of delivery of opiates for relief of pain.
Drugs, 30(6):539–​51.
60. Saunders C (1983). Beyond All Pain: A Companion for the Suffering and Bereaved.
London, UK: SPCK.
61. Murray Parkes C (1964). Recent bereavement as a cause of mental illness. British
Journal of Psychiatry, 110:198–​204.
62. Wilkes E (1964). Cancer outside hospital. Lancet (20 June):1379–​81.
63. Wilkes E (1965). Terminal cancer at home. Lancet (10 April):799–​801.
64. Hinton J (1965). Problems in the care of the dying. Journal of Chronic Diseases,
17:201–​5.
65. Clark D (1999). Cradled to the grave? Pre-​conditions for the hospice movement in
the UK, 1948–​67. Mortality, 4(3):225–​47.
66. Glaser B, Strauss A (1965). Awareness of Dying. Chicago, IL: Aldine.
67. Cartwright A, Hockey J, Anderson JL (1973). Life before Death. London,
UK: Routledge and Kegan Paul.
68. Murray Parkes CM (1978). Home or hospital? Terminal care as seen by surviving
spouses. Journal of the Royal College of General Practitioners, 28:29–​30.
69. Murray Parkes CM, Parkes J (1984). ‘Hospice’ versus ‘hospital’ care—​re-​evaluation
after 10 years as seen by surviving spouses. Postgraduate Medical Journal, 60:38–​42.
70. Hospice History Project: David Clark interview with Colin Murray Parkes, 10
January 1996.
71. Herxheimer A, Begent R, MacLean D, Philips L, Southcott B, Walton I (1985). The
short life of a terminal care support team: Experience at Charing Cross Hospital.
British Medical Journal, 290:1877–​9.
72. Clark D, Seymour J (1999). Reflections on Palliative Care. Buckingham, UK: Open
University Press.
73. Higginson IJ et al. (2002). Do hospital-​based palliative teams improve care for
patients or families at the end of life? Journal of Pain and Symptom Management,
23(2):96–​106.
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Conditions of possibilit y 147

74. Working Group on Terminal Care [The Wilkes Report] (1980). Report of the
Working Group on Terminal Care. London, UK: Department of Health and Social
Services.
75. Expert Advisory Group on Cancer [The Calman-​Hine Report] (1995). A Policy
Framework for Commissioning Services: A Report by the Expert Advisory
Group on Cancer for the Chief Medical Officers of England and Wales. London,
UK: Department of Health and Welsh Office.
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149

Chapter 6

Specialty recognition
and global development

Figure 6.1 Derek Doyle (1931–​)

Returning to Edinburgh in 1966 from work as a medical missionary in
Africa, Doyle soon found himself caught up in plans to create the city’s
first modern hospice, St Columba’s. He became the medical director from
its opening in 1977 and quickly used this as a platform for wider teaching
and promulgation of hospice ideas. He was instrumental in the formation
of several key national and international advocacy organizations, and took
a leading role in the creation of the specialty of palliative medicine, which
was officially recognized in the United Kingdom in 1987.
Reproduced by kind permission of University of Glasgow,
Copyright © 2016 University of Glasgow.
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150 To Comfort Always

Acceptance and spread

Any history of modern medical practice is, in part, a history of specializa-
tion. From the twentieth century onwards, it is also a history of globaliza-
tion. Beginning in the nineteenth century and reflecting broader changes
in what Emile Durkheim1 described as ‘the division of labour in society’,
medicine was undergoing forces of change often seen as both the inevitable
and desirable outcomes of scientific progress and advancement. The gen-
eralist was giving way to the specialist, and new fields of clinical endeav-
our were being defined and circumscribed. For the historian George Weisz,
these changes were driven by the unification of medicine and surgery, for
only within an understanding of medicine as a single domain was it sensi-
ble to divide into sub-​fields.2 By such specialization, it was then possible to
amass sufficient observations on a specific problem or aspect of medicine,
which an increasing scientific rationality required. Moreover, this was in
turn consistent with emerging views of the appropriate way to manage large
populations, through the systematic accrual of information about a certain
class of phenomena, problems, and their subcategories. We have already
seen evidence of this in the writings of nineteenth-​century physicians con-
cerned with the care of the dying, interested in their symptoms, and how
to describe and manage them. In the later decades of the twentieth century,
this field of clinical interest underwent a transformational change; first in
mapping out the scope of the activity, and then in raising questions about its
potential for geographic spread. Increasingly, it did this from the standpoint
of a recognized field of specialization that took on global dimensions.
In this chapter, we look in detail at the formation of palliative medicine as a
medical specialty and at the global spread of the field. There were two elements to
this process. First, palliative care had to be defined as an activity (and this came
to be at differing levels of specialization or generality). With this would come
the potential for recognition by the wider healthcare system, as well as from in-
terested groups in society—​for resource allocation; for education, training, and
research; and for designated service development. Second, palliative medicine
had to gain recognition from within the medical establishment itself to become
accepted as a legitimate field of medical specialization, and to establish pathways
for medical training, accreditation, and the regulation of standards.

Hospice growth—​laying the foundations

for specialization
St Christopher’s Hospice, founded in 1967, quickly became a source of inspi-
ration to others. As the first modern hospice, it was at the time unique in com-
bining three key principles: specialist clinical care, education, and research. St
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Specializ ation in the United Kingdom and Irel and 151

Christopher’s differed significantly from the more modest goals of the other
homes for the dying which had preceded it, and sought to establish itself as
no less than a centre of excellence in a new field of care. The success of St
Christopher’s was phenomenal and it soon became the stimulus for an expan-
sive phase of wider development.
In the United Kingdom, there was a golden period of hospice growth that
peaked in the 1980s, with about 10 new hospices coming into existence each
year. Established national charities then came alongside the emergent hospice
movement, giving support and strength to the field of palliative care. This was
an important phase in which a sense of critical mass was growing, when the ac-
tivists of the day could move in from the margins and begin to identify a centre
ground within the healthcare system that could be occupied successfully.3
From the outset, ideas developed at St Christopher’s were being applied differ-
ently in other places. Cicely Saunders was also acting as part of an international
network of like-​minded people that covered North America, India and Ceylon,
Australia, France, Switzerland, the Netherlands, and communist Poland, as she
reveals in her remarkable and extensive correspondence of the time.4 It came to
be accepted in several countries that the principles of hospice care could be prac-
tised in many settings—​in specialist inpatient units, but also in homecare and
daycare services. Hospital units and support teams were established that brought
this new thinking on care of the dying and those suffering with advanced dis-
ease into the very heartland of acute medicine. By the 1980s, a growing cadre
of doctors was developing an interest in the care of this group of patients and
their families. While many had transferred into this work in mid-​career or later,
others were beginning to dedicate their entire professional lives to it. However,
without formal recognition, the pathways into, and routes through a training
programme for specialized work in the care of the dying remained unclear.

Specialization in the United Kingdom and Ireland

In the United Kingdom, beginning in the early 1980s, three factors conjoined
to build a platform for the wider development of this new field of activity: a
medical association was formed to support its practitioners; a scientific jour-
nal was established; and, in due course, recognition was given to palliative
medicine as an area of specialization.5
By 1985, plans were being developed in the United Kingdom for an associa-
tion to represent the interests of physicians working in palliative care. Cicely
Saunders wrote enthusiastically about it to Derek Doyle (Figure 6.1)6 who,
together with Robert Twycross and Richard Hillier, made up a key group of
early protagonists. All three were physicians employed in hospices. Following
medical missionary work in South Africa, Derek Doyle had been instrumental
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152 To Comfort Always

in establishing St Columba’s Hospice in Edinburgh, which opened in 1977

and where he was its first medical director. Robert Twycross had joined St
Christopher’s as a medical research fellow in 1971, and in 1976 was appointed
consultant physician at the NHS hospice Sir Michael Sobell House in Oxford.
Richard Hillier was a former GP who had been drawn into hospice care in the
1970s and became the medical director of Countess Mountbatten House in
Southampton in 1977.3 Robert Twycross describes the context.
We didn’t have a ‘palliative care association’ and I guess round about 1983/​1984
Cancer Relief Macmillan Fund was playing a major part and was bringing people
from the NHS units together in an annual weekend in November, not far from
Oxford, and we’d meet and talk. And I remember talking, particularly with Richard
Hillier, about, should we have some national organization? But we were also living
under the shadow of Cicely Saunders and we didn’t want to do anything to offend
her, which I think is fair enough, and she didn’t come forward and say: ‘Here is the
national organization.’ So I think there was a reticence. And by the time we got to
‘84, or thereabouts, Richard was certainly of the opinion we should set up a ‘pallia-
tive care association’. But I felt we should, as doctors, get our act together, and then
as a doctors’ group go to the nurses, go to the social workers, and say: ‘Let’s come
together as a national organization.’ But if we set up a national organization for all-​
comers, it would be medically dominated, and I think this was not what I wanted. So
I won the argument, and Richard Hillier backed down on the multi-​professional as-
sociation. And, I think I’m right in saying, in Birmingham, October 1985, we had an
inaugural meeting of what was to become the Association for Palliative Medicine.
Obviously by now we had drawn in Derek Doyle and, not surprisingly, Derek Doyle
was elected inaugural Chair Person, and Richard was Secretary, and I was Treasurer.
It was skillfully led by Derek … And the fascinating thing was that, once we got a
letterhead and people could see that there was such a thing as palliative medicine,
within two or three years we were a recognized specialty … Now I know people like
Gillian Ford did much of the spadework, because she was on secondment from the
Ministry and knew how to deal with the powers that be. I think it must have made
her task much, much easier that we had a coherent professional organization …
A very important landmark.7

Following some early discussion about whether the term hospice should
appear in the name, the group soon came to be known as the Association for
Palliative Medicine for Great Britain and Ireland. The executive committee
of the new association quickly became aware of a paper written by the then
deputy chief medical officer for England, Gillian Ford, in which she outlined
the potential for this new field of medicine to gain recognition as a specialty
in its own right. Dr Ford was an important ally in the process. She and Cicely
Saunders had shared a flat as medical students, and she had taken up a volun-
teer role providing medical cover at St Christopher’s Hospice on weekends as
well as later taking up a secondment there. She describes her position there
in some detail.8
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Specializ ation in the United Kingdom and Irel and 153

I was part of the management team for the hospice, and I started looking at things
like training for medical staff in palliative care, as well as the things which were pre-
cisely St Christopher’s interests. And I did some studies… for instance, a survey on
the qualifications and experience of those medical staff who were in career grades,
what their background had been, what their qualifications had been; and I presented
this to the Association of Palliative Medicine at one of its earlier meetings. I sent out
a questionnaire to something like 800 general practitioners asking them what they
would identify, if anything, as their needs in this field. And I think I had replies back
from about 150, or 160, saying they were interested, and then I sent them a detailed
questionnaire about pain and symptom control, support of families, communica-
tions and those things. Almost all of them wanted pain and symptom control, and so
I put on a conference for them. So looking at what people’s backgrounds were, find-
ing out more and more about training needs, realising that the hospice movement
needed to do things like appoint its senior staff in conformity with the National
Health Service, the value of joint contracts or at least honorary contracts, the need
for the sort of principles and attitudes to get back into mainstream medicine, sug-
gested that there needed to be specialist training in the specialty in order for the
people to be listened to.
Well, the Association for Palliative Medicine was set up in about October/​
November ‘85, and … I was a member of the executive of that, and I think that
the paper I wrote about establishing palliative medicine (it wasn’t called that) …
establishing a specialty in this work; hospice terminal care, I think that was seen
by the executive and it was certainly [based on] the material I had derived from the
surveys I’d done about what people’s backgrounds were. At the same time Derek
Doyle had … I think he’d been talking to the juniors who were in the Association,
and asking what they needed. But, as I say, the driving force for this was really the
need for this expanding group of people to be recognized for the work that they
were doing, and for the teaching that they were doing.9

Discussions got underway with a number of key groupings within the Royal
Colleges, including the Intercollegiate Committee on Oncology, and ideas
were subsequently developed about how a training programme for the field
could be put together. The most influential group in this regard was the Joint
Committee on Higher Medical Training (JCHMT). At the time, a growing
number of universities and medical schools were calling on those work-
ing in hospices to teach students about pain control and physician–​patient/​
physician–​family communication, though as yet no formal curriculum on
palliative medicine existed. Gillian Ford prepared a paper for the JCHMT
and, at the same time, encouraged the chair of the Specialty Advisory
Committee in General Medicine and other senior medical colleagues to
visit St Christopher’s for an appreciation of the work being done there. These
senior medical colleagues found themselves impressed by the research of
Robert Twycross on the actions of morphine and diamorphine,9 and by the
evaluations that Colin Murray Parkes had conducted on the impact of hospice
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154 To Comfort Always

care.10 There was also considerable interest in the multidisciplinary approach

adopted at the hospice and the way team efforts were focused on the total pain
of the patient, seen in a multifactorial light. Yet there was still a sense that the
constituent elements of what came to be called specialist palliative care had
not yet been teased out. This made for difficulty in devising a training pro-
gramme for what were known then as the senior registrar years within medi-
cal training. It was also necessary to determine the specific prior experience
that would be required for entry into the new field.
The outcome of these deliberations was enormously important for the his-
tory of palliative care in the United Kingdom and Ireland and, arguably,
much further afield too.11 In 1987, palliative medicine was established as a
subspecialty of general medicine, initially on a seven-​year ‘novitiate’, which
once successfully concluded led to it being a specialty in its own right. In
1987, all UK doctors working full-​time in hospices were granted specialist
registration. Thereafter, entrants into higher medical training for the new
specialty were required to be members of the Royal Colleges of Physicians,
general practitioners, or psychiatrists, or fellows of the Royal College of
Surgeons. This was modified in 2002 to include members of the Irish College
of General Practitioners and fellows of the Royal Colleges of Radiologists
and Anaesthetists. Initially, membership in the Royal College of General
Practitioners was not a recognized mode of entry; however, considerable pro-
test and further campaigning led to its recognition within a few years.
In a 1988 article in the British Medical Journal, Richard Hillier celebrated
the achievement. After 21 years of pioneering work from Cicely Saunders,
the breakthrough had been achieved. As Hillier put it, ‘the Royal College
of Physicians recognised terminal care as a subspecialty of general internal
medicine and called it palliative medicine’.12 William Munk would have been
astonished, and we must assume, delighted.
The four-​year training programme in the United Kingdom was designed
to equip trainees with skills to practice palliative medicine in any setting. It
was heavily supported by the Cancer Relief Macmillan Fund, which provided
pump-​priming grants to set up new senior registrar training programmes.
There were 10 posts funded in its first wave of development.12 The training
generally included spending at least two years working within hospice or
hospital-​based specialist palliative care teams, to gain a range of experience
in chronic pain management, oncology, community services, or paediatric
palliative care. Importantly, UK programmes also required competence in
a range of essential management skills including recruiting, managing staff,
and service development. In 2005, it was noted by Doyle that ‘in practice, most
recruits into the specialty today have had several years’ experience in general
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Specializ ation in the United Kingdom and Irel and 155

medicine, oncology, or radiotherapy after gaining their higher qualification,

but only a few have had experience of specialist palliative medicine as an SHO
[senior house officer]’.13 In 2007, Professor John Tooke’s inquiry into medical
careers recommended that medical training in the United Kingdom should
consist of one foundation year (similar to the house officer year), three years
of general training in a broad mix of specialities, followed by four to five years
in higher specialist training. Progression through the three stages would re-
quire achievement of competencies and a rigorous selection process, and this
was to become the new framework for training in palliative medicine.
As the initial developments about the specialty were taking place in the
1980s, discussions were also underway about the creation of a journal to
publish research, reviews, and debate relating to the work. Following some
discussion about its name and orientation, the first issue was published in
1987, bearing the title Palliative Medicine, under which a ‘strap line’ appeared
on the cover stating: A MULTI-​PROFESSIONAL JOURNAL . The wording was crucial
and did a fair amount to antagonize colleagues in other professions, but the
message was clear—​medical practitioners had seized hold of the new field of
caring for those with advanced disease at the end of life and, over time, the
medical model would exert a growing influence on thinking and practice.
Enigmatically, the first issue contained a paper by Cicely Saunders entitled
‘What’s in a name?’14 Designed to clarify, her observations may have further
muddied waters that were already being stirred up by the debate on defini-
tional matters. The particular discussion about which point in the disease
trajectory should trigger the entry of palliative care would continue to unfold
over the next quarter century.
Although all palliative care aims to improve the quality of life remaining for patients
whose disease cannot be eliminated, somewhat confusingly it is also used to refer to
different stages of disease and its treatment. This is particularly obvious in malig-
nant disease … It is unrealistic to aim for cure in over half the patients at the stage
when they present with this diagnosis and they need what is termed ‘palliative’ treat-
ment from the beginning. However, those working in units or services designated
as palliative do not normally treat patients at the stage when the disease itself can
be mitigated or controlled; their skills are focussed on alleviating the symptoms and
general suffering associated with uncontrollable disease in its final stages, although
a regression of the disease process has still to be watched for and exploited … This
journal is concerned with the second phase of palliative rather than the more ‘active’
stages of treatment for cancer (or other persistent disease) which are well covered
elsewhere.15

Despite these questions, progress towards specialty recognition was getting

underway elsewhere. Developments in Ireland took a similar path. In 1989,
the first post of consultant physician in palliative medicine was created in the
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156 To Comfort Always

form of a joint appointment between the long established Our Lady’s Hospice
and St Vincent’s University Hospital, Dublin. Then in the mid-​1990s, the
Irish Medical Council considered the inclusion of palliative medicine in its
list of recognized specialities. Such recognition required evidence of a sig-
nificant corpus of knowledge specific to palliative medicine, over and above
that which would be within the competence of any registered medical practi-
tioner, as well as the existence of a reputable body to oversee developments in
the new specialty, including training and education. The Minister for Health
and Children approved the inclusion of palliative medicine among the list of
recognized Irish medical specialities in June 1995.15
Within an intensive period of activity lasting just a few years, both the
United Kingdom and Ireland had succeeded in establishing the specialty of
palliative medicine with a training programme leading to consultant status.
Arrangements for representing the interests of the field were now in place and
an appropriate scientific journal had been created. Subsequently, considerable
expansion in the palliative medicine workforce would follow.
A survey of the membership of the Association of Palliative Medicine
(APM) in 200416 revealed that 58.1 per cent were in full-​time appointments
in palliative medicine and 70.4 per cent of the workforce was female. There
were 325 consultants, 49 associate specialists, and 78 staff grade post-​holders,
as well as 160 specialist registrars, of which 83 per cent were female. Some
60 consultants held honorary NHS contracts, but despite an APM recom-
mendation, there were very few NHS consultants holding honorary contracts
with hospices. In Ireland specifically, there were seven consultant physicians
in palliative medicine in 2005, with a further seven consultant posts in the
process of being filled.17
Such growth in the palliative medicine establishment had been made pos-
sible by wider service developments and policy changes. During the 1970s
and 1980s, a major programme of hospice expansion had taken place in the
United Kingdom, gaining wide geographic coverage. The expansion in chari-
table hospices was also reflected in a growing number of NHS inpatient units,
though the ratio between the two remained fairly constant at roughly 3:1.
Indeed, it was the ‘mixed economy’ of care between the non-​government and
government sectors that became a distinct hallmark of the palliative care de-
velopments in the United Kingdom and Ireland. From the later 1980s on-
wards, hospice and palliative care services in the United Kingdom also ben-
efited from special government funding streams that enabled consolidation
and expansion, initially providing ring-​fenced monies for independent hos-
pices, and then for palliative care more generally.18
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Specializ ation in the United Kingdom and Irel and 157

There were also some specific policy innovations at this time. In 1992, an
expert group of physicians and nurses reporting to the UK Minister of Health
was instrumental in making a case for palliative care to be provided based on
need, rather than diagnosis. The report called for wider education in pallia-
tive care for all health professionals and greater emphasis on matching ser-
vices to the needs identified at the population level.19 Three years later, the
Expert Advisory Group on Cancer produced what came to be known as the
Calman Hine Report on the commissioning of cancer services in England
and Wales.20 It was crucial in giving a prominent place to palliative care
within the different tiers of cancer care provision and in giving guidance on
staffing levels required in relation to population. The report was seized upon
by the palliative medicine community as an opportunity for development.
Demand for palliative medicine was growing and there were more jobs on
offer than candidates to fill them.
In early 1989, the United Kingdom also saw the creation of its first university
chair in the palliative care field at the United Medical and Dental Schools of
Guy’s and St Thomas’ Hospitals, London. Dr Geoffrey Hanks was appointed
as the first professor of palliative medicine in Europe, and this set the tone
for subsequent academic developments in the field, which tended to focus on
the clinical disciplines. After graduating from University College Hospital
Medical School in 1970, Hanks had completed his clinical training and spent
a year in general practice. He then explored his interest in clinical pharma-
cology, working from 1975 until 1979 in senior positions within the pharma-
ceutical industry. In 1979, he was appointed Research Fellow and Honorary
Senior Registrar at Sir Michael Sobell House, Oxford, where he collaborated
with Robert Twycross, and also had a base in the Oxford Regional Pain Relief
Unit. He kept a foot in both the palliative care and the pain communities and
was instrumental in bringing a searching medical rationality to the manage-
ment of pain in the palliative care setting. In 1983, he was appointed to the
first hospital consultant post in palliative medicine in the United Kingdom,
at the Royal Marsden Hospital, a stronghold of acute cancer medicine. Here,
he started the new clinical service at the Sutton branch of the hospital, and
he was also responsible for developing the unit at Fulham Road, and bringing
them together as a single functional service. He forged a particular interest in
the benefits of the emerging modified-​release morphine formulations, which
came to have a huge influence on the practice of palliative medicine.21 As pro-
fessor of palliative medicine, he quickly set about working to raise the banner
of palliative care and, in particular to influence medical thinking about the
new specialty.
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158 To Comfort Always

In 1993, Hanks moved to Bristol for a new position and a department cre-
ated for his team, all of whom moved with him. It was a significant year for the
field, as well as for Hanks himself, with the 1993 publication of the first edi-
tion of the Oxford Textbook of Palliative Medicine, which he edited alongside
his Scottish and Canadian colleagues, Derek Doyle and Neil Macdonald.22
The work contained 18 major sections furnished by 103 authors, with 43 of
them from North America. Derek Doyle describes how it came about.

Why did we do it? Well the answer’s an obvious one, because we had to say to the
non-​palliative medicine doctors … ‘Will you take us seriously?’ There was a certain
urgency about producing a major 860-​page book and saying: ‘Now do you take us
seriously?’ Oxford University Press insisted that it must not be a British book and
it must not be for British readership; it must be ‘world’ and, therefore, they insisted
that it should be approximately equal both sides of the Atlantic. And, as we know,
in North America, what they call palliative medicine is not what we call palliative
medicine … Why did we choose the authors that we did? We must have a major
lot of contributors, and big contributions, from the UK, but after that we’d have to
be diplomatic. The next question was; would we go to people that are only in pal-
liative medicine? I don’t think we spent five minutes talking about this because we
looked around and said, ‘we haven’t enough’. We have not enough people that are
authoritative, highly enough qualified, experienced enough, and have got a track
record of writing as opposed to being super at the bedside and, do we possess all
the knowledge? And the three of us said straightaway: ‘No.’ And there’s a message
that’s important here; we may be the full-​time specialist practitioners of it, but we
wouldn’t be here if it wasn’t for the others to whom we can turn, who advise us,
guide us, inspire us, challenge us, kick us up the backside. And they have things to
contribute, and so that’s why you’ve got people who are all totally sympathetic to
what we are doing …
The next big question was, would this be a textbook of palliative ‘care’? There
was no doubt about that, the answer was: ‘No, not at all.’ We felt that we needed a
textbook of palliative ‘medicine’ for the following reasons—​we needed medical re-
spectability and credibility. We had to stand up and say to the College of Physicians
and Surgeons, and others all over the world, and I mean all over the world … The
other thing was that we felt that it was going to be too big, and too nebulous, and far
too difficult for us to edit if it was to be everything in palliative care. And the more
we looked at ‘medical only’ the more we realised that was, in fact, a major book—​
medicine only. How to make it relevant for the world was another issue, and we
failed. There is no doubt, we failed. The book has, in that way, I think, taught Geoff
and me a lot. It has helped the people in the medically sophisticated first world,
where palliative medicine started and is growing. Whereas what we wanted to say in
that book was that palliation applies to everybody in the world … We felt we wanted
all that. Now that was difficult, of course; we were producing a book for the general-
ist as well as for the specialist; we were producing a book for the researcher as well as
for the ordinary doctor. But, of course, it turned out to be a book which seemed the
pièce de résistance of the best that could possibly be offered in a medical first world.
It has made a contribution, there’s no question about this.23
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Global dimensions —the World Health Organiz ation 159

These challenges of developing palliative medicine in the global context had

been building up in the decade before the publication of the Oxford textbook.
Jan Stjsernswärd at the World Health Organization (WHO) had been a key
player in this regard. In writing the final chapter of the first edition of the
textbook, he had an opportunity to summarize developments by 1993, and in
particular to highlight the role of the WHO.

Global dimensions—​the World Health

Organization
As we already discussed in Chapter 5, in 1973 John Bonica hosted the first
international pain meeting, providing a forum for debate, discussion, and
the development of pain relief in cancer and other fields.24 Interaction be-
tween pain and terminal care experts began to increase. A crucial change
came when Stjernswärd was appointed to work at the WHO, as he recalls in
this memoir.
When I left the Ludwig Institute in 1980 to become chief of cancer at the World
Health Organization, I applied the principle of finding out what is already known,
organising services to reflect this knowledge, and research to address continuing
uncertainties. My philosophy was that nothing would have greater impact in global
cancer control than being able to deliver the knowledge that already existed in the
developed world. Out of the eight most common cancers globally, five were more
common in developing than in developed countries. Three of these were prevent-
able; early diagnosis increased survival in three; therapy is curative in three, but
only if the diagnosis is made at an early stage; and pain relief and palliative care are
needed for most.25

Driven by this orientation, as described in Chapter 5, a meeting was convened

by Stjernswärd in 1982 to tackle the problem of cancer pain at the popula-
tion level.26 It established the principle that drugs would be the mainstay of
cancer pain relief and that an inexpensive and easily applicable approach to
this should be developed. Four years later, the WHO published a guide to
cancer pain relief 27 with a view to relieve cancer pain worldwide by the early
twenty-​first century. In this guide, pain relief was conceptualized as a ‘ladder’,
with the regular giving of oral morphine as the linchpin of clinical practice
for all involved in the care of patients experiencing pain from advanced ma-
lignancy. Field testing of the ladder took place in several locations. ‘WHY NOT
FREEDOM FROM CANCER PAIN? ’ became its advocacy slogan. The 1986 document
was translated into 22 languages and, by 1996 when a second edition ap-
peared, it had sold half a million copies.
The approach was predicated on three foundation or process measures that
were deemed low-​cost but capable of producing big effects, and prioritized
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160 To Comfort Always

above the goal of establishing outcome measures. The three elements con-
sisted of education (of the public and professionals); drug availability (requir-
ing changes to legislation and prescribing practices); and governmental policy
(to give support to the other measures). By 1993, Stjernswärd could report
that 11 countries had adopted such policies: Canada, France, Australia, Japan,
Sweden, Finland, Italy, Mexico, Netherlands, Vietnam, and the Philippines.28
Over time, the WHO broadened its interest beyond the specific issue of
cancer pain relief. A 1990 publication29 maintained the focus on cancer, but
now engaged more widely with the question of palliative care. It considered
more broadly what could—​and should—​be done to comfort patients suffering
from the distressing symptoms of advanced malignant disease. Prepared by a
group of nine experts in oncology, neurology, pain management, hospice and
nursing care, the booklet drew together the evidence and arguments needed
to define clear lines of action, whether on the part of the medical and nursing
professions, or in the form of national legislation. It marshalled arguments
for palliative care based on the magnitude of unrelieved suffering borne by
the majority of terminally ill patients. Although methods for the relief of pain
were emphasized, other physical, psychological, and spiritual needs for com-
fort were also included in the report’s recommendations.
The conceptualization of palliative care pivoted on its concern with qual-
ity of life and comfort before death, emphasizing the family as the unit of
care, dependence on teamwork, and its relationship to curative interventions.
The WHO’s booklet contained sections on measures for the relief of pain and
other physical symptoms, the psychosocial needs of the patient and family,
and the need for spiritual comfort. A section devoted to ethics provided sev-
eral important statements concerning the legal and ethical distinction be-
tween ‘killing the pain’ and ‘killing the patient’, and the need to recognize the
limits of medicine. The work, fully endorsed by the WHO, was a landmark
moment in the history of palliative care, which had now been fully defined,
moreover as a global, public health issue.
The definition was the product of a large expert group, although Stjernswärd 25
states that the drafting skills and penmanship of Robert Twycross played a big
part. It framed palliative care as:
… the active total care of patients whose disease is not responsive to curative treat-
ment. Control of pain, of other symptoms, and of psychological, social and spiritual
problems, is paramount. The goal of palliative care is achievement of the best quality
of life for patients and their families. Many aspects of palliative care are applicable
earlier in the course of the illness in conjunction with anti-​cancer treatment …
Palliative care … affirms life and regards dying as a normal process … neither has-
tens not postpones death … provides relief from pain and other distressing symp-
toms … integrates the psychological and the spiritual aspects of care … offers a
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Global dimensions —the World Health Organiz ation 161

support system to help patients live as actively as possible until death … offers the
family a support system to help the family cope during the patients illness and in
their own bereavement.29

Many elements here might have been recognized by William Munk. The
WHO booklet was certainly endorsed by Cicely Saunders and welcomed by
the emerging cadre of palliative care leaders around the world. It achieved
a broad consensus and was widely used to advocate, to teach, and to lobby
governments for recognition.
Twelve years later, a new definition of palliative care appeared from the
WHO. The field was becoming better known, debates about its mission and
scope were proliferating, there was an increasing interest in not limiting its
vision simply to terminal care or to oncology, and instead make it available
to patients and families where the disease was not so far progressed, or where
the distinction between curative and palliative approaches might not be so
clear cut. This time, however, the process of producing a definition appeared
to be different. The work was published in a journal article, rather than in a
WHO publication, and seemed to be not the product of a multinational expert
group, but rather of the named authors, who were each employed by WHO
and included Stjernswärd’s successor as head of cancer and palliative care.
Published in 2002, the second WHO definition saw some critical changes.
Palliative care is an approach that improves the quality of life of patients and their
families facing the problems associated with life-​threatening illness, through the
prevention and relief of suffering by means of early identification and impeccable
assessment and treatment of pain and other problems, physical, psychosocial, and
spiritual.30

The definition went on to state that palliative care

◆ provides relief from pain and other distressing symptoms;
◆ affirms life and regards dying as a normal process;
◆ intends neither to hasten or postpone death;
◆ integrates the psychological and spiritual aspects of patient care;
◆ offers a support system to help patients live as actively as possible
until death;
◆ offers a support system to help the family cope during the patient’s illness
and in their own bereavement;
◆ uses a team approach to address the needs of patients and their families,
including bereavement counselling, if indicated;
◆ will enhance quality of life, and may also positively influence the course of
illness;
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162 To Comfort Always

◆ is applicable early in the course of illness, in conjunction with other thera-

pies that are intended to prolong life, such as chemotherapy or radiation
therapy, and includes those investigations needed to better understand
and manage distressing clinical complications.30
Some clinical experts in the field disliked the 2002 reference to palliative
care as an ‘approach’, seeking instead to make a claim for its specialist status.
Nevertheless, those with a more public health orientation welcomed the new
language.

Two important revisions are incorporated in WHO’s new definition. First, ‘terminal
illness’ is replaced by ‘life threatening illness’. Superficially, this modification may
appear to be slight, but its implication is nothing short of revolutionary, broaden-
ing the reach of palliative care to all people suffering from chronic illnesses. By so
doing, the WHO’s definition has been brought into line with recent medical ad-
vances. Diseases formerly considered to be ‘death sentences’, such as cancer, cardiac
disease, and infection with HIV, are now manageable. Second, ‘relief of suffering
by means of early identification’ has been added. Thus, palliative care is envisioned
as pre-​emptive, as well as responsive. In one bold stroke, the WHO affirms that end
of life problems have significantly earlier origins, and that treating them early en-
hances management though the course of illness.31

These were large and complex claims, not least when major concerns existed
about the extent to which palliative care services were achieving them, either
due to a lack of coverage, or because the services did not have the capacity to
deliver multidisciplinary care at this level of sophistication. Despite emerg-
ing evidence about increased palliative care development around the world,
progress remained uneven, with many regions and populations underserved.
A second edition of the WHO work on the pain ladder, with the addition of
a guide to opioid availability, was published in 1996.32 Two years later, another
expert document was published on pain relief and palliative care in children
with cancer.33 In the 1998 publication Symptom Relief and Terminal Illness,34
it was stated that more than 60 countries of the world had developed national
strategies on cancer pain management. Here, and again drawing on the con-
tributions of Twycross, MacDonald, Ventadfridda, and others, the focus
shifted to the management of symptoms other than pain. It placed a strong
emphasis on constant evaluation of the patient’s condition (by both doctor
and nurse) to ‘build a picture of the disease itself, the patient as a whole, and,
in particular to build a picture of the effects of the illness on the patient’s
quality of life’.
A key aspiration within the emerging palliative care community had been
to engender interest in and support for palliative care on the part of intergov-
ernmental agencies, and particularly those with a major influence on global
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Global networks and organiz ations 163

policy making. In this context, WHO stands out as the first key agency of
this type to take an active interest in international palliative care develop-
ment.35 Undoubtedly, in many resource-​poor countries, the input of WHO
was significant in promoting cancer pain relief and palliative care develop-
ments. Less clear was the enduring relevance of the WHO’s approach in the
more affluent nations, where its influence seemed less visible and less central
to processes of advocacy and development. Of more significance is the ques-
tion of whether the WHO’s public health model of palliative care was fully
adequate to tackle the barriers to development that existed. The ‘foundation
measures’, for example, are persuasive in their descriptive power, but did not
seem to offer an adequate model for action and change. Meanwhile, other
organizations had inserted symbolic language about palliative care into their
policies—​for example, the World Health Assembly’s statement on cancer pre-
vention and control, 2005; and the United Nations Programme on Ageing,
2002 (updated 2008). However, the effect of such endeavours was difficult to
gauge, other than in relation to general awareness-​raising. If the WHO estab-
lished a platform for recognition, undoubtedly there remained many oppor-
tunities for other intergovernmental organizations and professional networks
working in an international context.

Global networks and organizations

From the 1980s, pioneers of hospice and palliative care worked to promote
their goals in many countries, building increasingly on international net-
works of support and collaboration.36 Many of these were medical doctors,
often working with colleagues from nursing, social work, allied health pro-
fessions, community activism, and academia. Over time, local groupings ex-
panded, made connections elsewhere, and international cooperation became
a striking feature of many palliative care innovations.
In 1976, the First International Congress on the Care of the Terminally Ill
was held in Montreal and organized every two years thereafter by Balfour
Mount and colleagues. It quickly became a celebrated meeting, with attend-
ance from all over the world. It also became known for its own particular ori-
entation and culture—​something different from, and going beyond, the more
standard format of a medical meeting. Balfour Mount describes the process
and the impact.
The first conference was in the fall of 1976 and it featured Cicely and Elizabeth
Kübler-​Ross among others, and it was meant to mark the end of our two-​year pilot
project. In essence Cicely told about St Christopher’s and what was done there,
Elizabeth talked about her work, and I talked about the pilot project. And that was
the first one. We decided that it was sufficiently successful in terms of generating
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164 To Comfort Always

discussion and interest and positive experience that we’d have another one. And so
the next one was then in ‘78. The idea behind them was to put together a conference
that was of the highest possible standard in terms of content and speakers, and that
the programme—​again taking a note from Cicely—​reflected patient/​family care re-
search and teaching, and in the clinical aspects reflected all domains of human ex-
perience, so physical, psychosocial, spiritual, existential, whatever … and with as
nearly as possible equal weighting in each of those areas. And I think that’s been the
guiding principle in putting together the programmes … We’ve had some really
memorable times and speakers: we’ve often … been most successful when we’ve
incorporated lateral thinking when it’s somebody from another field or another area
… something that touches on some aspect of our work can give us a fresh perspec-
tive from a different vantage point, you know. And that has often worked well …
Part of it is out of respect for staff stress and so we tried to build in things that will be
nurturing and positive things for the people who are there. And some of the things
we’ve just sort of stumbled onto, but others were sort of planned that way. One of the
most interesting examples is the little part of the meetings we call ‘Reflections’ …
my sense was we needed to do something to produce an experience of community
that would be fairly intense and focused and yet brief … and so we’d select around
the theme of a piece of music, and then select visuals that work with that music and
then we have a reading or something that is said to introduce it beforehand and the
whole thing has to be under five minutes. And we call these ‘Reflections’, and the
first time we did it, we did it two or three times, and to my astonishment there were
people who wrote in on their evaluation form that the best part of the meeting were
the ‘Reflections’, and I thought, ‘Gee, I’m not sure that’s want I want to hear’, you
know. But it said something about our need, that part of what we go to conferences
for is a sense of community … because it certainly produces a powerful experience
of community.37

North America
If the Montreal meetings were fostering a sense of international community,
there was also much that needed to be done on the domestic front of North
America. Philippines-​born physician Josefina Magno38 graduated from the
University of Santo Tomas, Manila, in 1943. Her husband died of cancer
in 1955, and from the late 1960s, she based herself in the United States. In
1975, she took up a fellowship in medical oncology at Georgetown University
Hospital, which was where she came across the hospice approach. She de-
scribes here how she came to visit St Christopher’s in 1976.
I realised we were treating those patients until they were dead, you know. Georgetown
is a research institution, so of course we have all of these sophisticated new drugs,
and these sophisticated protocols, and I watched those patients spending the last
days of their lives throwing up because of this chemotherapy. And I talked to my
boss and I said, ‘Why are we doing this? Why are we treating them and they are not
curable?’ And his answer sort of changed my life because he said, ‘Jo, it’s easier to go
on treating them than to say there’s nothing more that we can do.’ Very good, OK.
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Global networks and organiz ations 165

I had read a little paragraph in a book written by Cicely and I said, ‘Well, hospice!’
I wrote to her, I didn’t even know who she was, I didn’t know her address, I just said
‘Cicely Saunders, London.’ I said, ‘May I come to see what you are doing?’ And she
wrote back and she said, ‘Come.’ So I went to St Christopher’s prepared for the worst.
I said, ‘My God, they have a place where everybody’s dying, it must be horrible.’
Anyway, you know how it is, they were dying, but they were dying painlessly, they
were dying peacefully. And I said, ‘We can do all this in the United States because
we have the expertise, we have the caring attitude, and we have the resources, maybe
more than England has.’ So I learned everything I could there.39

She came back determined to promote hospice in the Georgetown area of

Washington. She quickly created a pilot hospice programme, and the follow-
ing year she established the Hospice of Northern Virginia. Determined to
get wider support for the hospice ideal, by 1980 she was the first executive
director of the National Hospice Organization and was soon extensively in-
volved in the move for Congress to support hospice care under Medicare.40
In 1984, she established the International Hospice Institute (IHI) to pro-
mote physician involvement in hospice and four years later, she founded the
Academy of Hospice Physicians, leaving IHI to take on an increasing interest
in the developing world.
By 1996, as the IHI and College, it was under the leadership of Edinburgh-​
based Derek Doyle and, subsequently, as the International Association of
Hospice and Palliative Care (IAHPC), it had a string of medical doctors as
president of its board, all of them specialists in palliative medicine.41 These
included an Australian, Roger Woodruff (1997–​1999); two Argentinians, the
US-​based Eduardo Bruera (2000–​2004) and Roberto Wenk (2008–​2013); as
well as the American Kathleen Foley (2005–​2007); and the German Lukas
Radbruch (2014–​).42

Europe
In 1988, the European Association for Palliative Care (EAPC) was formed
in Milan, Italy, and Vittorio Ventafridda, who had been involved in the early
discussions and shaping of the WHO approach to cancer pain relief, became
its first president the following year.43 Ventafridda was well established as a
pain specialist with expertise in cancer. He had been a founding member of
the International Association for the Study of Pain in 1973 and had served
on some of its committees in the 1980s. Born in the northern Italian city of
Udine, he graduated at Pavia’s Medical University in 1952 before spending
four years in the United States where he did his internship, and then took a
residency in anaesthesiology at the Research and Educational Hospital of the
University of Illinois, Chicago. On returning to Milan, he took charge of the
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166 To Comfort Always

anaesthesiology department at the Istituto Nazionale dei Tumori and began

to get interested in palliative care. He also forged a close friendship with the
industrialist Virgilio Floriani and his wife Loredana, and together, in 1977,
they established the Floriani Foundation to promote care of the terminally ill
in Italy.44 When discussions began about the creation of a European coordi-
nating society for palliative care, the Foundation offered to assist.
The British social work academic Frances Sheldon describes the process of
formation, the key players, and the explicitly multidisciplinary approach that
was taken.
Elisabeth Earnshaw-​Smith, who was the principal social worker at St Christopher’s
and a very well-​respected figure, was unable to go to a meeting that was called in
Milan to discuss setting up the European Association of Palliative Care … which
was called by Vittorio Ventafridda … so I sort of went along in her stead … so
there was this fascinating meeting in Milan at Christmas-​time when … they had
red carpets down the street and bay trees outside the shops because it was Advent
and Christmas-​time; it was a very magical sort of time in Milan. And there was this
group of people from all over Europe gathered, with me and Richard Hillier and
probably Robert Twycross and someone else from the UK—​there must have been
a senior nurse and I can’t remember who it was—​a nd with people from all over,
gathered by Vittorio Ventafridda on his sort of network and contacts, to set up this
European group. It was really absolutely fascinating to be trying to put this organ-
ization together over that weekend. So I was very lucky to be part of that grouping
and I hung on in there because I wished to be part of it because I thought it was
interesting, and I thought there should be a voice for social care and I was the only
voice for social work and social care in that group. Yes, there was a sort of consti-
tution drawn up … I remember sitting in this very, very elegant lawyer’s office in
Milan on the Sunday morning as we all had to sign endless Italian legal documents
about this and people’s planes were coming and going and we somehow felt we were
locked into this office until we’d all signed these documents setting up the EAPC
… there was something fascinating, in a sense, you know, watching the different
European perspectives, watching Vittoria Ventafridda and Derek Doyle negotiating
from their very, very different personalities and different perspectives on the world,
[it] was absolutely fascinating to be a player in that, although a rather small player.45

Starting in 1990, the EAPC held regular congresses, soon alternating with
the meeting in Montreal, across western and eastern European capital cities.
The first of these, in Paris, was a milestone event, and saw palliative care
in Europe operating on a new scale. The guests included French president
François Mitterrand, as well as Her Royal Highness the Duchess of Kent.
There was simultaneous translation in English and French. Some 1 630 par-
ticipants from 23 countries and about 50 journalists were present. During
the three days of the congress, more than 30 French and European journals
and magazines published articles about palliative care, and all French televi-
sion channels and several radio stations reported the event. Sixty-​five invited
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Global networks and organiz ations 167

speakers from different countries participated in the Scientific Programme,

and 105 ‘posters’ on research, clinical activity and on service provision were
presented by teams from numerous European countries and also from out-
side Europe. Nurses made up half of the participants, followed by physicians
(27 per cent). In addition, there were volunteers, psychologists, social work-
ers, auxiliaries, pastoral counsellors, professional trainers, physiotherapists,
chemists, hospital administrators, dietitians, and speech therapists. The joint
chairs of the organizing committee were Professor Maurice Abiven and Dr
Michèle Salamagne from France, and the chair of the scientific committee
was Professor Geoffrey Hanks from the United Kingdom.46 Some 14 years
after the first Montreal congress, Europe had put down a marker of its inter-
est in the newly formed specialty. Its influence was to increase rapidly, and in
time the EAPC meetings were branded as ‘world congresses’ of palliative care.
By the mid-​1990s, EAPC was producing important clinical guidelines for
palliative care. Hanks exerted significant leadership in this regard, and had
been one of its 42 founding members in 1988 in Milan. In addition to chair-
ing the scientific committees of the first congress in Paris, he was EAPC vice
president (1989–​1995) and then president (1995–​1999). He participated in and
led a number of research and study groups and was the main author of the
EAPC guidelines on morphine and opioids for cancer pain, first published in
1996, and updated in 2001 and 2012.47
Palliative care in Western Europe made rapid progress from the early
1980s, but by the late 1990s there were still striking differences in provision
across states.48 After the foundation of St Christopher’s in England in 1967,
it was 10 years until the first services began to appear elsewhere—​in Sweden
(1977), Italy (1980), Germany (1983), Spain (1984), Belgium (1985), France
(1986), and the Netherlands (1991). In all of these countries, the provision of
palliative care moved beyond isolated examples of pioneering services run by
enthusiastic founders. Palliative care came to be delivered in a variety of set-
tings (domiciliary, quasi-​domiciliary, and institutional), though these were
not given uniform priority everywhere.
In 1989 and 1992, the European Parliament adopted resolutions on the
counselling and care of the terminally ill but, thereafter, showed little interest
in related issues until January 2005, when the question was put to the parlia-
ment concerning what action the Commission had taken to prepare a strat-
egy for palliative care. Meanwhile, the Council of Europe had published a set
of European guidelines on palliative care in 2003, which described palliative
care as an essential and basic service for the whole population. Its recommen-
dations were used quite actively in countries with less-​developed palliative
care systems, particularly in Eastern Europe, where they served as a tool for
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168 To Comfort Always

advocacy and lobbying, but they seemed to resonate less in the countries of
Western Europe.
Policy issues relating to palliative care in Europe were also raised by the
EAPC and other organizations. At conferences in 1995 (Barcelona)49 and
1998 (Poznań),50 exhortatory declarations were made, calling for govern-
ment action on palliative care on a national level and drawing attention to
key issues facing palliative care as it developed internationally. By 2003, the
European Society for Medical Oncology was giving greater recognition to
palliative care.51 In 2004, the European Federation of Older Persons launched
a campaign to make palliative care a priority topic on the European health
agenda.52 The same year, the European office of WHO produced an important
document, Better Palliative Care for Older People, with an aim ‘to incorporate
palliative care for serious chronic progressive illnesses within ageing policies,
and to promote better care towards the end of life’.53 A companion volume,
Palliative Care: The Solid Facts, became a resource for policymakers in a con-
text where ‘the evidence available on palliative care is not complete and …
there are differences in what can be offered across the European region’.54
Despite the advocacy potential of these and other publications however, evi-
dence of their impact remained unclear.55

Eastern Europe
By the late 1990s, interest in palliative care was also growing among health-
care workers and volunteers in the countries of Central and Eastern Europe
that were emerging from communist rule. Some of these were active in es-
tablishing hospice and related services in their own local communities and
were also taking part in study visits and exchanges with hospice and palliative
care units elsewhere in Western Europe. In 1999, and supported by the inter-
national outreach of George Soros’s Open Society Institute, the Eastern and
Central European Palliative Task Force came into being at an EAPC congress
held in Geneva. Mary Callaway of the Open Society Institute describes how
it came about.
We had the [Open Society] Foundations identify two potential leaders, or two people
in their country that were interested in hospice and palliative care and we brought
these people together for two and a half days in Geneva, in advance of the European
Association for Palliative Care meeting, and we met with them to try to find out what
their needs were in their country. So they said that they had an enormous need for
professional education; that their doctors and nurses and social workers, if they had
social workers, weren’t receiving training on end-​of-​life care in medical schools and
nursing schools; that the public wasn’t aware of end-​of-​life care; and they weren’t
aware that they were entitled to pain management or decision-​making at end of life,
so there was an enormous need for public education; that drug availability was a
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Global networks and organiz ations 169

huge issue in all of these countries, that there weren’t opioid analgesics available for
basic pain management; and then the last area was that there needed to be changes
in health care policy and in systems in each of these countries. So we went back
and basically developed a programme to address those issues and announced …
areas that we were going to develop: fund resource training centres; develop hos-
pice and palliative care national and regional education programmes; translation
grants because there is an enormous need for available educational materials in the
native languages; and travel grants and scholarship grants for professionals to re-
ceive training outside; and then a series of national education programmes.56

The Task Force aimed to gather data on hospice and palliative care in the
region, share experiences of achievements and obstacles, influence the insti-
tutions of government, set standards to meet local needs, and raise aware-
ness. A key leader within the group was Professor Jacek Luzack who had
graduated from the medical faculty of the Academy of Medical Science, Karol
Marcinkowski, in Poznań in 1959. He specialized in cardiology and then an-
aesthesiology, and held a number of academic appointments. By the early
1980s, with civil unrest heightening in Poland around the Solidarity move-
ment, and in an atmosphere of change and foment, he became familiar with a
few activists who were becoming interested in the idea of establishing a hos-
pice in Poznań. This was a major spur to hospice development in Poland. By
the mid-​1980s, he was in contact with Jan Stjernswärd at WHO and Vittorio
Ventafridda in Milan, and was running his own small cancer pain service at
the University Hospital in Poznań. In 1988, with help from Robert Twycross,
he and his nursing colleagues went to Milan for training, and this was
quickly followed by the first palliative care symposium in Poland. By 1991,
and working closely with Twycross, he was offering palliative care training
programmes and also beginning to engage in discussions with the Ministry
of Health. He talks about these influences on his thinking.
My meeting with Robert Twycross was important in ‘88. When I was starting with
palliative care, I started with pain treatment, and I met in one conference with
Robert Twycross, and he asked me: ‘You are paying attention to the pain, but it is
not all, it is only a small thing in all the problems to providing appropriate holistic
care.’ And it was obviously that … yes. I am thinking that I am only on the pain
concerned, it is not enough. Yes, he told me this, and he told me also: ‘You are prob-
ably also now paying big attention to pain, but it is not sufficient. It must be widened,
extended, your point of view of the patient as a person.’ And I also very much ap-
preciated meeting with Professor Corr, and he sent me Eric Cassell’s book on The
Nature of Suffering and the Goals of Medicine, 57 and it helped me very much talking
with him about death and dying. I think some persons helped me very much to de-
velop my philosophy. And also co-​operation and influences made in Poland. How
the people are taking care, how enthusiastic they were, how they sacrificed their
time. It is like some movement which helps other people to understand what this
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170 To Comfort Always

means. We also organise every week meetings with our volunteers’ group. We are
talking about what is the hospice? What is the approach? What is death and dying?
What is our feeling? We started this in ‘89.58

Across the former communist countries of Eastern Europe and Central Asia,
there were few palliative care developments in the years of Soviet domination.
Most initiatives can be traced to the early 1990s, after which many projects
got under way. These were documented in detail,59 and in 2003, there was evi-
dence of some service provision in 23 out of 28 countries in the region. Poland
and Russia had the most advanced programmes of palliative care, with con-
siderable achievements also made in Romania and Hungary. Nevertheless,
in a region of over 400 million people, there were just 467 palliative care ser-
vices, more than half of which were found in a single country, Poland.

Latin America
Eduardo Bruera was born in Argentina in 1955. The son of a cardiologist,
he went to medical school in Rosario, and gained his MD in 1979 before
moving to Buenos Aries for further training, qualifying in internal medicine
and medical oncology in 1984. It was during this residency training that he
noted the need of terminal cancer patients for symptom control and support-
ive care. However, despite finding other sympathetic medical students and
publishing material himself in the American medical literature, there were
no posts in palliative care in Argentina, and he moved to Canada to pursue
his interest. In 1984 he began a fellowship in supportive care at the National
Cancer Institute of Canada at the University of Alberta, and by 1988, he had
become the director of the palliative care programme in Edmonton, Alberta.
This was a clinical and academic post. Then in 1993, Bruera became Canada’s
second professor of palliative medicine. He describes his early palliative care
awakening in Buenos Aires.
So I became progressively disappointed by the fact that while we were making so
much emphasis on success, that success was really helping a very small proportion
of the patients we came to see. And for those who we didn’t have much to offer to, we
were not really doing any emphasis in trying to learn more about symptom control
and supportive care. The prevailing feeling in oncology was that it was just a matter
of time before adequate therapy developed, and therefore we could not be distracted
from looking at the issues of the cancer treatment and cancer cure, because once that
was achieved then the suffering associated with terminal illness would disappear
automatically. On the other hand, looking at the evidence, that wasn’t clear to me;
it wasn’t as clear to me how we were going to make such an enormous difference in
such a short time. So I became progressively disappointed of the fact that we were
not focusing on pain, malnutrition, nausea, dyspnoea, confusion, those things that
I was seeing daily.
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Global networks and organiz ations 171

I remember having gone to hear lectures, by Ventafridda, for example, on the con-
cepts of palliative care, to an almost empty auditorium of the faculty of medicine in
Buenos Aires. The books from Robert Twycross were not translated, but they were
available. I read some of his material, but I would say that the concepts were com-
pletely unknown, both at the pre-​graduate and postgraduate … areas of medical
education. And to my knowledge no other disciplines at all, like nursing, psychol-
ogy, sociology were aware of the issues related to the care of the terminally ill. So
in my case I came across some of this literature out of frustration with the status
quo as far as literature, and looking for something else within the area of oncology,
I couldn’t find it … of course, there was no association of palliative care, there was
not a single palliative care programme or service in the country, there was no forum
for dissemination of these, or discussion, or debate, or anything like that.60

In the late 1980s, however, Argentinean doctors such as Roberto Wenk and
Gustavo de Simone began to organize training programmes and palliative
care services, mainly in the hospital setting. One who was taught by them, Dr
Jose Eisenchlas, describes the context by 2001.
In Buenos Aires for instance there are more or less I think 14 or 15 public hospitals
and there are palliative care teams in six of them. In two or three main cities there
are palliative care teams too. And nowadays it looks like the media has gained some
insight into the palliative care field too and they release more information about
this. You know, Latin culture is quite different from Saxon culture, and people in
Argentina, it seems don’t want to hear nothing about death. So it’s a great difficulty
to continue running more and more palliative care, but I believe too that the hyper-​
technology in medicine is rising to the top and declining, they are in crescendo
for instance about human rights in Argentina … support from the Church too, is
increasing the palliative care field nowadays: really it’s good for us who are working
there. Day by day there is more knowledge from the public over palliative care and
day by day there are younger people who become involved in palliative care and that
reinforces us who are working from perhaps longer times there. Really, I am very
enthusiastic about what palliative care can be in Argentina.61

The turn of the millennium in 2000 saw the creation of the Latin American
Association of Palliative Care.

Asia
Asia: Korea, Japan, and China
The first evidence of hospice developments in the Asia Pacific region came
with a service for dying patients in Korea at the Calvary Hospice of Kangung,
established by the Catholic Sisters of the Little Company of Mary in 1965—​
two years before the opening of St Christopher’s; such services had increased
to 60 in Korea by 1999.62 In Japan, the first hospice was also Christian, es-
tablished in the Yodogwa Christian Hospital in 1973. By the end of the cen-
tury, the country had 80 inpatient units.63 Protocols for the WHO three-​step
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172 To Comfort Always

analgesic ladder were first introduced into China in 1991, and there were said
to be hundreds of palliative care services in urban areas by 2002.64 In 2001, the
Asia Pacific Hospice Palliative Care Network was founded; representing 14
countries where hospice and palliative care services had become available.65

Asia: India
An extensive review of hospice and palliative care developments in India in
2006 mapped the existence of services state by state and explored the per-
spectives and experiences of those involved, with a view to stimulating new
development.66 The study found that 135 hospice and palliative care services
existed in 16 states. These were usually concentrated in large cities, with the
exception of the state of Kerala, where services were much more widespread.
Non-​government organizations and public and private hospitals and hospices
were the predominant sources of provision. Palliative care provision could not
be identified in 19 states or union territories. Nevertheless, successful models
existed in Kerala for the development of affordable, sustainable, community-​
based hospice and palliative care services,67 and these seemed to have poten-
tial for replication elsewhere.
Dr M. R. Rajagopal and Dr Suresh Kumar had both been instrumental
in initiating palliative care developments in Kerala, working closely with
a friend, P. K. Ashok Kumar. Rajagopal studied at Trivandrum Medical
College, qualifying in 1971, and did postgraduate work in anaesthetics at the
All Indian Institute of Medical Sciences. In 1976, he returned to Trivandrum
as an anaesthesiologist in the government service and, a decade later, in 1986,
he became professor and head of the department of anaesthesiology at Calicut
Medical College. As a result of conversations with Suresh Kumar and Ashok
Kumar following a lecture given by the English nurse, Gilly Burn, founder
of Cancer Relief India, Rajagopal began to take an interest in palliative care.
The three founded the Pain and Palliative Care Society in Calicut, Kerala, in
1993 and began seeing patients at the beginning of 1994. Cancer Relief India
provided early financial support and opportunities for training in Oxford.
Rajagopal describes the motivations and the context.
One turning point for me was one patient. That was a college professor, I think
he was 42, he came to me with a cancer of the tongue and it was spreading to his
lower jaw. He’d had some treatment already but it was incurable, and I gave him a
mandibular nerve block. The next day he was pain-​f ree and I was patting myself on
my back: I was very happy. He didn’t look very happy but I hardly noticed that, in
retrospect. The man committed suicide the next day. One of his cousins was a col-
league of mine, so he told me later that the fact that I did a nerve block was the first
thing that indirectly communicated to him that his disease was incurable. While
I was patting myself on my back, I didn’t check to see what his level of knowledge
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Global networks and organiz ations 173

was; I didn’t bother to find out how he felt: I just looked at his nerve block. I wasn’t
bothered about anything else. Obviously my nerve block was successful and the
patient died—​but that was a very nebulous idea, it was a disquieting thought, noth-
ing more than that. It’s not as if that gave me a sense of direction or anything, it
didn’t. It just told me that what I was doing was not right enough. But what actu-
ally had happened was a few years prior to that, when I had a little bit of money on
me, I ordered a couple of books out of a catalogue. One of them was Treatment of
Cancer Pain68 by Twycross and Lack. I thought the book—​from the title, I didn’t
know who Twycross or Lack were—​f rom the title I thought it would tell me all sorts
of things about nerve blocks. When it came, and I read the book, it was about one
paragraph on nerve blocks: I was disgusted and I kept it in the cupboard, I didn’t
bother to read it. But after this incident I went back to the book and some things
started making sense.
But even then I must admit that things were very nebulous, but a few things
changed it. One was my association with Suresh and one of his friends, Ashok.
Suresh was a member of our department of anaesthesiology and Ashok was a friend
of his and we used to exchange ideas and thoughts. They were very vibrant, young
people—​unlike me!—​w ith their large circle of friends and a lot of ideas and they
had their own experiences. Like Suresh has experience of his friend’s mother who
once told Suresh—​she was a cancer patient—​when he was talking to her, supporting
her, she said, ‘Suresh, you are interested only in the drugs, you are not interested in
me’ … which was something that struck him tremendously. Ashok similarly had a
lot of experience with friends and relatives who were treated like machines by the
medical system. So they used to think about all this and much of what we have now
developed came out of our conversations between the three of us.
But another major influence was Gilly Burn. In those days when we used to talk
about a lot and say things like how absurd the medical system was and how we were
not doing the right thing with the patients, we still didn’t have a sense of direction,
but I went to attend a workshop in Trivandrum which was conducted by Miss Gilly
Burn of Cancer Relief India. All of a sudden several things became clearer to me.
That was, though I had some sort of nebulous idea from Robert’s book, it was then
that the concept of palliative medicine became a bit clearer to me. And then we con-
tinued to talk it over between us and we decided to do what we could. We decided
to form the Pain and Palliative Care Society and registered charitable organisation.
And then Gilly again helped: she took me on a course to Oxford which was very
helpful for me—​a ten-​weeks course—​a nd she also gave some money. She gave us
around 100 000 rupees, with no tax attached. She said use it on what you think best,
and that’s something that kicked the ball, and that was one of the beginnings of our
organisation.69

Southeast Asia: Malaysia

Dr Ednin Hamzah studied medicine in Britain and practised in the northern
city of Newcastle, before returning to Malaysia in 1997. The previous year, a
chance meeting with the chairman of Hospis Malaysia (Kuala Lumpur) had
brought to his attention that the post of medical director with this service
had been vacant for two years. He applied for and accepted the appointment
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174 To Comfort Always

and, while still in England, prepared himself through an attachment to St

Oswald’s Hospice, Newcastle. After seeking advice from Australasia experts
Dr Cynthia Goh and Dr Rosalie Shaw, he presented a new vision to the Hospis
Malaysia board in which palliative care was perceived ‘as a needs-​based care
not a prognosis-​based care’. The board approved this shift in emphasis and
a rigorous development programme followed. Key changes were to result: a
new approach to care; different patterns of work; public awareness initiatives;
a focus on cultural issues; family conferences; data collection and evaluation;
and a comprehensive programme of education and training. He describes the
context for the development of palliative care in Malaysia.

The concept of hospice started in 1991, it came out of an international meeting in

Singapore not long before that I think it was ‘88 or ‘89, a lot of people from Malaysia
attended that meeting and I think Kathy Foley and quite a few others in palliative
care attended that meeting and a number of the participants from Malaysia came
back and thought ‘Wow this is something really, really profound and it needs to
happen here’. In Kuala Lumpur it was basically led by an Australian GP working in
a family medicine department in the university … and she put together a group of
people—​a couple of doctors, a couple of nurses, some business people and others,
lawyers and whatever else, and they decided to form this organisation ‘Hospis
Malaysia’. Similarly, a different group was working in Penang to set up another hos-
pice service there. So this was the start of things and they worked initially in some-
one’s house and then eventually one of these people that were involved with this
thing was chairman of a local hospital and he enabled a room at this hospital to be
used as the headquarters for this fledgling hospice and there they stayed until I came
by in ‘97.70

Africa
The African Palliative Care Association (APCA) was founded in 2004, seek-
ing to represent all palliative care interests across the whole continent. Its first
chief executive was Faith Mwangi-​Powell, who had come from working as an
advocacy officer for the Diana, Princess of Wales Memorial Fund. No stran-
ger to palliative care in the African context, she describes her goals at the time
of taking up her new position.

And my role is really to take the leadership in APCA in really enhancing, our
mission statement is to promote and support culturally acceptable and afford-
able palliative care across Africa, and I think that’s really what we are hoping to
do by supporting countries which do not have any services to start up; support-
ing countries which have palliative care to scale up; and really through train-
ing trying to help them fund-​r aise; trying again to really raise their profile, you
know, being the spokesman of people who really have nobody to speak on their
behalf, and just be the resource for palliative care in Africa. And being maybe
much more the link between what is happening in Africa and what is happening
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Global organiz ation and activism 175

internationally so we have very big plans for APCA: it’s a huge job, it’s a huge
challenge, but at the same time I think it’s much needed and I think there is
hunger for APCA and I think there is so much commitment and we’ve got such a
fantastic board, who are very, very committed to APCA, and we just hope that it
will go from strength to strength.71

A 2006 review72 of hospice and palliative care developments in Africa

mapped the existence of services country by country and explored the per-
spectives and experiences of those involved. The 47 countries studied were
grouped into four categories of palliative care development: no identified
hospice or palliative care activity (21); capacity-​building activity under
way to promote hospice and palliative care delivery (11); localized provi-
sion of hospice and palliative care in place, often supported by external
donors (11); hospice and palliative care services achieving some measure
of integration with mainstream service providers and gaining wider policy
recognition (4).
Major difficulties included opioid availability; workforce development;
ability to achieve sustainable critical mass; absorption capacity in rela-
tion to major external funding initiatives; ability to cope with the scale of
HIV/​AIDS-​related suffering. The authors concluded that models existed in
Uganda, Kenya, South Africa, and Zimbabwe for the development of afford-
able, sustainable community-​based hospice and palliative care services, and
that the newly formed APCA had significant potential to promote innovation
in a context where interest in the development of hospice and palliative care
in Africa had never been greater. A small number of studies also appraised
the development of palliative care in sub-​Saharan Africa73,74,75 and stimulated
interest in the evaluation of services.

Global organization and activism

During these years, there was evidence of a growing spirit of collaboration
between activists interested in the global development of palliative care.
In 2003, a world summit held in The Hague led to the creation of the first
World Hospice and Palliative Care Day, which ran annually thereafter. The
following year, the Venice Declaration of 2006 brought forward by IAHPC
and EAPC called for strategies and resources to support research activity on
palliative care in developing countries.76 In 2007, palliative care associations
at the Budapest congress of the EAPC entered into a set of commitments for
palliative care improvement.77 The same year, in collaboration with 25 other
organizations, the IAHPC developed a list of essential medicines for pallia-
tive care in response to a request from the Cancer Control Programme of the
WHO.78 During this period, debates also began to emerge in which access
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176 To Comfort Always

to palliative care was considered as a human right,79 and access to palliative

medication was incorporated into a United Nations Commission on Human
Rights resolution—​‘[calling on states] to promote effective access to such pre-
ventive, curative or palliative pharmaceutical products or medical technolo-
gies’80 —​reflecting a growing interest in the relationship between palliative
care services and their accessibility to the populations of individual countries.
There were also many developments at the country level, and a substantial
literature on national developments in hospice and palliative care recorded
important achievements and successes in the face of adversity, as well as the
barriers to development.81 A comprehensive review of palliative care growth
in some of the English-​speaking countries where progress had been most sig-
nificant (the United Kingdom, United States, Canada, Australia, and New
Zealand) acknowledged that each had different starting points for palliative
care development but ‘in the longer run most countries tend to develop a mix
of independent, hospital-​based, and community-​based services’.82 By the end
of the twentieth century, the published literature contained a small but grow-
ing comparative perspective on hospice and palliative care developments in
different regions of the world.83
Before the turn of the millennium, there was little systematic understand-
ing of how palliative care was emerging in the global context. While activists
in the field did occasionally comment on international links and initiatives,
there was almost no evidence from research studies to shed systematic light
on the state of service development, policy recognition, or the general vital-
ity of palliative care in different settings around the world. Some countries
had established national associations for palliative care, occasionally with
directories of services, but in the main, it remained difficult to access any
useful information about resources and infrastructure other than through
local contacts. Despite some green shoots of growth, the idea of collabora-
tive endeavours in policy innovation, service development, or research to
promote palliative care in the international context was still in its infancy.
Accordingly, the evidence base for palliative care provision and the notion
that it might be rooted in public health approaches—​a view to which WHO
was strongly committed—​were both weakly developed, and often not consid-
ered by palliative care activists to be a high priority.82
The start of the new millennium, however, was a key time in the develop-
ment of palliative care globally. All around the world, palliative care lead-
ers seemed to bemoan the same problems: a lack of public recognition and
understanding of their work; professional indifference on the part of many
health and social care providers; a lack of third party funding to set up dem-
onstration projects; poor recognition of palliative care within the architecture
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Key international studies 177

of both national and international health policy; weakly developed training

programmes, with few routes for accreditation and professional recognition;
and a limited evidence base about the overall development of palliative care
and its efficacy, costs, and benefits.
Following that first summit on international palliative care development
that had taken place in 2003 in The Hague, others followed—​in Seoul in 2005,
Nairobi in 2007, and Vienna in 2009—​leading that year to the creation of
the Worldwide Palliative Care Alliance (later the Worldwide Hospice and
Palliative Care Alliance). These meetings brought together the existing or-
ganizations with international palliative care interests, as well as other ‘out-
ward facing’ national associations from specific countries, together with
funders, activists, and researchers. As the first decade of the twenty-​first cen-
tury closed, the international palliative care community appeared organized
as never before, with growing levels of commitment to development issues,
but major challenges still in prospect.
In 2011, two separate declarations emphasized the importance of palliative
and end-​of-​life care. The United Nations referred to the need for palliative
care provision in its statement about the care and treatment of people with
non-​communicable disease.84 In addition, the World Medical Association
made its case for end-​of-​life care improvement, stating that receiving appro-
priate palliative medical care must not be considered a privilege but a true
right, independent of age, or any other associated factors.85 At the same time,
calls for the legalization of assisted dying and euthanasia were growing in
several jurisdictions, and public debate for and against continued to flourish,
often stimulated by high profile examples of key cases and endorsement by
leading opinion formers.
Significantly, studies were also emerging that could underpin palliative
care development with the beginnings of an evidence base. Despite being lim-
ited by the methodological and practical challenges of research on an inter-
national scale, new studies began to describe the key issues and to map an
agenda for scientific collaboration in a rapidly developing field.

Key international studies

Early projects
The first research study to explore the development of palliative care in a
comparative manner across jurisdictions focused on seven western European
countries.86,87 It showed two variations in the delivery of palliative care.88
First, palliative care services were found in a variety of settings: domiciliary,
quasi-​domiciliary, and institutional. Second, these forms were not prioritized
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178 To Comfort Always

equally in every country. Allowing for population differences, there were

great variations in the numbers of palliative care services across nations, and
the number of specialist palliative care beds per head of population varied
from 1:c18 000 persons in the United Kingdom to 1:c1.9 m persons in Italy.
This work led directly to another study that successfully mapped the devel-
opment of palliative care across 28 former communist countries in Eastern
Europe and Central Asia.60 Only Poland and Russia had more than 50 pal-
liative care services, and five countries had none. Homecare was the form of
service most commonly found, followed by inpatient provision. There was a
great absence of hospital mobile teams, as well as services in nursing homes
and daycare provision. Only 48 paediatric palliative care services were identi-
fied, covering just nine of the 28 countries.
Using a related approach, a team at the University of Giessen carried out
a study covering 16 countries across Eastern and Western Europe. This in-
corporated a comprehensive analysis of demographics: the history of hospice
and palliative care; the number of current services; funding; education and
training of professional staff; and the role of volunteers—​w ith an in-​depth
portrayal of particular services.89
In the period 2003–​2009, the International Observatory on End of Life Care
(IOELC), based at Lancaster University in the United Kingdom, became the
key source of palliative care mapping studies around the world, constructing
national reports for over 60 countries.90 In particular, it carried out major
reviews of palliative care development in Africa (26 countries),73 the Middle
East (six countries),91 and South East Asia (three countries),92 as well as a study
covering the whole of India.67 These reviews had several features in common.
They established the number and character of palliative care services existing
in a given country, funding arrangements, the level of policy support, and the
specific context of opioid availability. They also contained rich narratives of
experience, based on accounts from local activists in palliative care.

Global comparison of palliative care development

Emerging from this series of studies was an ambitious attempt in 2006 to
measure and classify palliative care development in every country in the
world. The IOELC built on a basic description that had been produced ear-
lier by Avril Jackson at the Hospice Information Service, St Christopher’s
Hospice, but which had not been tested or published. An attempt was now
made to add more depth into the analysis by developing a four-​part typ-
ology depicting levels of hospice and palliative care development across the
globe, an idea which had first been developed in the review of services in
Africa.
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Key international studies 179

Group 1: Countries with no known hospice/​palliative care activity

Group 2: Countries with capacity-​building activity
Group 3: Countries with localized hospice and palliative care provision
Group 4: Countries where hospice and palliative care services were reaching a
measure of integration with the mainstream healthcare system93
By presenting a world map of hospice and palliative care development, the
study sought to contribute to the debate about the growth and recognition of
palliative care services—​in particular, whether or not the four-​part typology
reflected sequential levels of palliative care development. The typology differ-
entiated levels of palliative care development in both hemispheres and in rich
and poor settings. It showed that only half the world’s countries had some
form of designated palliative care service.
In 2011, the analysis was updated with a refined six-​point typology.94 Now
136 of the world’s 234 countries (58 per cent) had established one or more hos-
pice/​palliative care services—​an increase of 21 countries (+9 per cent) from
2006. By 2011, although there were indications of growing interest in pallia-
tive care on the part of national governments and policymakers, advanced in-
tegration of palliative care with wider health services (the highest category in
the typology) had been achieved in only 20 countries globally (8.5 per cent).

Global Quality of Death Index

Building on this approach, a study commissioned by the Lien Foundation in
Singapore and carried out by the Economist Intelligence Unit was published in
2010.95 This also attempted a ranking of palliative care development in 40 coun-
tries, with a more complex set of indicators. The Quality of Death Index scored
on 24 indicators in four categories, each with a separate weighting, as follows:

(1) Basic end-​of-​life healthcare environment (20 per cent)

(2) Availability of end-​of-​life care (25 per cent)
(3) Cost of end-​of-​life care (15 per cent)
(4) Quality of end-​of-​life care (40 per cent)

The study ranked the United Kingdom first, with the best quality of death,
owing to its advanced hospice care network and a history of state involve-
ment in end-​of-​life care. Some advanced nations rank poorly—​for instance,
Finland at 28 and South Korea at 32. The report noted the high position of
Hungary (11) and Poland (15). The United States, however, with the largest
spending on healthcare in the world, ranked at just 9 in the index, principally
due to limited public funding for end-​of-​life care, the costs to the patient,
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180 To Comfort Always

and the restriction of government-​f unded reimbursements through Medicare

only for patients who give up curative treatments.
The report noted that across the world, public healthcare funding often
prioritizes conventional treatment and provides only partial support for
end-​of-​life care services, meaning such care must rely on philanthropy and
community help. It took the view that a widespread cultural belief in affluent
countries that governments should provide and pay for healthcare services
has hampered private sector provision for end-​of-​life care services. At the
other end of the scale were developing countries, such as China and India,
where state funding levels for end-​of-​life care were very low, provision-​sparse
and localized, and private payment was the norm. The revised and expanded
2015 Index evaluated 80 countries using 20 quantitative and qualitative in-
dicators across five categories: the palliative and healthcare environment (20
per cent); human resources (20 per cent); the affordability of care (20 per
cent); the quality of care (30 per cent); and level of community engagement
(10 per cent).96

Prospects for global improvement

Taken together, internationally there was by the early decades of the twenty-​
first century a growing nexus of funders, intergovernmental organizations,
philanthropic bodies, and non-​profit organizations devoting some or all of
their interests to palliative care development. The decade after 2000 saw a
great burst of international activity from within the palliative care commu-
nity. New associations came into being; interchange and information flow
between key players increased; and high-​level declarations resonated from
palliative care congresses intent on raising the profile of end-​of-​life issues.
For the first time in its short history, palliative care became the focus of inter-
national and comparative research studies, and an evidence-​based picture
emerged of palliative care provision around the world. Greater interest in pal-
liative care was also seen on the part of philanthropic and intergovernmental
donors. It was a time of considerable achievement. Nevertheless, at the same
time it exposed specific problems.
For some, palliative care remained limited by an inward-​looking culture.
This manifested itself in several ways. Major conferences rarely featured key
figures from outside the specialty. (The International Congress on Palliative
Care held biannually in Montreal was an exception.) Research collabora-
tions were similarly constrained. There was a striking absence of senior
­figures from oncology, old age medicine, psychiatry, and primary care
working towards the development of palliative care and making appropriate
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Prospects for global improvement 181

connections. Even public health showed little engagement, despite the ef-
forts of some palliative care leaders to champion their work within a public
health model.
Such observations, it might be argued, could seem consistent with the
emergence of a new field and with a still-​small number of countries in which
policy integration and specialty recognition (see the next section ‘Further
progress in achieving specialty status’) had been attained. There was much
to do to build up internal critical mass—​in service provision, education, and
research programmes. Yet, the field also appeared preoccupied with questions
of definition and there was much argument about differences between hos-
pice, palliative, supportive, and end-​of-​life care.
The appetite for these debates within the palliative care world seemed in-
commensurate with the interest of external colleagues. Indeed, when others
did look in from the outside, they were prone to ask some simple but challeng-
ing questions: what is palliative care doing for people with HIV disease? How
is it responding to the growing needs of ageing populations with high levels of
comorbidity at the end of life? What can it teach primary care and the speci-
alities of hospital medicine? How can it be mainstreamed into general health
and social care? And what is the evidence for its cost-effectiveness? Certainly,
there were achievements in all of these areas, but the scaling up of activity in
education, research, and service delivery continued to challenge the resources
of the palliative care community.
For such reasons, palliative care remained poorly framed within evidence-​
based global policymaking. The discourse surrounding the global devel-
opment of palliative care was still weakly articulated and relatively sparse.
Within the palliative care field, especially among clinical academics and re-
searchers, there was an understandable and strong focus on demonstrating
the efficacy of palliative care interventions. This concentrated efforts in char-
acterizing syndromes, clusters of pain and other symptoms, and on measur-
ing the relative impact of differing therapeutic regimes on outcomes of care.
A smaller group focused on the economic costs and benefits of good pallia-
tive care—​for the healthcare system, as well as for patients and families. Far
less effort was expended on understanding how palliative care could be po-
sitioned within the language of global policymaking. Palliative care was not
one of the Millennium Development Goals. It was hard to find in the priori-
ties of the United Nations, UNESCO, and other global organizations. It had
only the most tentative recognition in the frameworks of the World Bank, the
Global Fund, and in the concerns of the world’s largest philanthropic donors
and foundations. Much more needed to be done to demonstrate the links be-
tween primary care and palliative care; to explore the role of palliative care in
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182 To Comfort Always

poverty reduction and community cohesion; and to examine how palliative

care could reduce social, economic, and gender inequalities.97
Nevertheless, by 2010, the global palliative care community could claim
some significant successes. With a growing global infrastructure for advocacy,
fundraising, and collaboration, the next decade would be crucial in achiev-
ing a higher level of policy recognition. A significant breakthrough came in
2014. First, the World Health Organization, with the Worldwide Palliative
Care Alliance, published the first ever Global Atlas of Palliative Care,98 which
was endorsed by the WHO executive board.99 A few months later, the World
Health Assembly passed a resolution requiring all governments to recog-
nize palliative care and make provision for it in national health policies.100
It was a powerful moment and celebratory statements followed from around
the world. However, recognition alone, heavily informed by rights-​based rea-
soning, seemed unlikely to overcome the challenges that palliative medicine
continued to face.

Further progress in achieving specialty status

In 2007, Carlos Centeno and colleagues101 reported on a survey of palliative
medicine specialization in the WHO European region, covering 52 countries.
They found that palliative medicine had official certification in just seven
European countries. In five countries, palliative medicine had become a sub-
specialty following certification in a full specialty—​Poland (1999), Romania
(2000), Slovakia (2005), Germany (2006), and France (2007). In 10 other
countries—​Czech Republic, Denmark, Norway, Sweden, Finland, Iceland,
Spain, Malta, Israel, and Latvia—​t here was evidence of action in progress re-
lating to certification in palliative medicine. Professor Stein Kaasa, chair of
palliative medicine in Trondeim, Norway, and at the time also president of
the EAPC, describes in 2004 some of the struggles to gain recognition for the
field in his own country.
I think the development has been extremely interesting the last four to five years.
We have seen a fast development. First of all, recently, all the health regions in
Norway got permanent funding for having centres of expertise within all the health
regions and that is established now. These are not clinical centres but centres which
shall promote palliative care within their health regions and that do research. Then,
secondly, palliative medicine was recently acknowledged as a … field within the
medical community in Norway, so now our palliative medicine society is part of
the Norwegian Medical Association. And now we see also that, in a couple of years,
I think that all health regions in Norway will have a university-​based unit. And
recently, we got the second chair in palliative medicine in Bergen, here in Norway
… We’ve just started a Nordic course in palliative medicine. It’s a two-​year course.
We meet six times over one week for two years and there are working assignments
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Further progress in achieving specialt y status 183

in-​between. And it has been very successful so far, I think, with two courses in
Norway, two in Sweden and one in Denmark and one in Finland, and we are start-
ing with a second round in half a year from now. I think there are several chal-
lenges. One is related to skills and competence and, from a medical point of view,
I think the only solution to do, to formalise competence and skills, is that pallia-
tive medicine is officially recognised as a specialty. But we need to do something
about it.102

By 2010, around 18 countries worldwide had established palliative medicine

as a specialty or subspecialty,103 with considerable diversity in the procedures
governing specialty status. Palliative medicine, whether described as a spe-
cialty or subspecialty, did not constitute a uniform ‘currency’ of specializa-
tion for the field. Healthcare systems differed significantly in their accredita-
tion of medical practitioners and especially in their accreditation of specialist
training, and this was reflected in the recognition of palliative medicine in
different places. There were also resource implications affecting support for
training, though these did not explain the wide variations in length of train-
ing that could be observed.
In 2014, more information was available on the European context104 when
Centeno and colleagues reported that specialty recognition for palliative
medicine had been obtained in 18 out of the 53 countries in the WHO
European region. The report described the main features of the specializa-
tion process in each country and the date of certification. Eleven countries
had now joined the list since the previous European study: Malta, Czech
Republic, Finland, Georgia, Latvia, Norway, Israel, Italy, Hungary, Portugal,
and Denmark. Ten of these countries had recognized the specialty, subspe-
cialty, or field of competence status within the five previous years. A high
level of heterogeneity in the training processes and programmes was again
acknowledged.
Beyond the WHO European region, there was no well-​documented as-
sessment of countries with palliative medicine accreditation; however, one
addition to the 2010 list was Lebanon (2013).105 Taking this into account, it
was estimated that in 2014 there were at least 26 countries around the world
that had recognized some form of accreditation for the specialty or subspe-
cialty of palliative medicine: Argentina, Australia, Czech Republic, Denmark,
Finland, France, Georgia, Germany, Hong Kong, Hungary, Ireland, Israel,
Italy, Latvia, Lebanon, Malaysia, Malta, New Zealand, Norway, Philippines,
Poland, Portugal, Romania, Slovakia, United Kingdom, and the United
States.106
Australia had what was widely accepted as the first professor of palliative
care in the world with the chair of Dr Ian Maddocks in 1988 in Adelaide. He
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184 To Comfort Always

describes here how his appointment came about, and the slender and oppor-
tunistic edifice upon which it was built.
That interest in palliative care came about first, I think, through the article that
Victor Zorza wrote, I think it was in The Guardian, about 1980,107 that described
the death of his daughter in a hospice. And it was beautifully written, with great
feeling, and it described how this young woman, dying, I think, of lymphoma,
how she had helped her parents through the terrible distress of losing her. How
she, given the comfort and support of that hospice situation, had really looked
after them. And I found that very moving. And I went to the chief of the hospital
and said, you know, ‘Read this, because we really don’t do death at all well here.
Why don’t we do something about it? You’ve got some empty space there, you
know, why don’t we set up a little hospice in the hospital? You know, do some-
thing’. So we set up a little working group. We didn’t know much about hospices
anywhere else in the world. We set up a working group that consisted of people
from the Anti Cancer Fund, the community nurses, domiciliary care agencies,
general practitioner representatives, people from the hospital itself, and we ex-
plored: What shall we do about this? What do we know about what can be done?
And we started off by getting some ‘soft’ money to employ a research worker to
say, ‘What are the gaps in care of people who are dying in Southern Adelaide?’
And she went around and asked different providers, patients’ relatives, GPs and
so on: ‘What are the problems that you are having with the care of dying people?’
And she identified about seven or eight gaps in the care of dying people: There
were no volunteers available, the GPs didn’t know much about palliative care,
there were no respite beds, there were no specific hospice beds. Those sorts of
things. We wrote this up and submitted it to the Health Authorities with recom-
mendations that something should be done to establish a hospice programme,
that would not duplicate any existing service, but would seek to introduce
some additional resources that would work alongside, and network with, exist-
ing district nursing services, existing oncology and pain management services,
and so on.
The Director of Nursing at the hospital was captured by this, and she actually
gave us a very good senior nurse, a woman who had been in charge of the oncology
ward and who was very interested in moving in this direction, and she became the
first appointment. One single nurse to serve Southern Adelaide. And later she was
joined by two sessions, one full day’s equivalent of a doctor, who happened to be an
anaesthetist. And I had become the Chairman of this group that was organising this
(I was still just doing my own thing; I wasn’t involved in palliative care, but I was
promoting it, I was talking about it, I was advocating for it, I was encouraging it,
looking for funds, making the submissions to government and so on), and we gradu-
ally added to this team. And, at that time, there was some funding for good ideas.
And so, gradually we built it up, and we were able to take on a half-​time doctor,
and a social worker, and so on. Then came this conversation: ‘Why don’t we ask the
Minister for a Chair in Palliative Care?’ And they said, ‘well, you know, you know
about this stuff; palliative care’. And I thought, ‘I haven’t been practising it all, I’m
still just being a generalist physician’. So I wrote a proposal for a Chair of Palliative
Care, and the Minister at that stage … the idea of a hospice appealed to him. So
the next thing was to write a job statement for a Chair of Palliative Care, and an
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Further progress in achieving specialt y status 185

advertisement for a Chair of Palliative Care. And I did all of those, and then I wrote
an application for a Chair of Palliative Care. And of course there was nobody else in
Australia that was trained in palliative care, there was nobody trained in palliative
care. So I didn’t really have very much opposition for the job, and so I was appointed
in the middle of 1988, and started to establish a hospice.108

This came some 20 years before formal specialty recognition in Australia. The
Royal Australasian College of Physicians (RACP) established a pathway for
subspecialty training in palliative medicine in 1991, with a three-​year train-
ing programme. But as palliative medicine was not on the federal govern-
ment’s list of medical specialities, the fellows emerging from the programme
were classified as specialists in general medicine. In 1999, a chapter of pallia-
tive medicine was created within the Adult Medical Division of the RACP,
again with its own training pathway and, in order to create a second entry
point to specialist training, this one with a two-​year training programme. The
result was that all doctors, whether new graduates or specialist practition-
ers, had a defined route into specialized training in palliative medicine. This
quickly led to specialty recognition in New Zealand, which was achieved in
2001. In Australia, the process proved longer and more complex, culminating
in recognition of the new specialty by the Minister for Health in 2005.109
The development of palliative medicine in the United States happened in
three phases:110 (1) the period before the work of Elizabeth Kübler-​Ross and
Cicely Saunders became known; (2) the period of development of hospice pro-
grammes across the country, when services in the United States grew dra-
matically from the founding organization in New Haven in 1974, to some
3000 providers by the end of the twentieth century; and (3) the development
of a distinct and officially recognized subspecialty of medicine. Within this
scheme, the path to subspecialty recognition for palliative medicine in the
United States began in 1988 with the creation of the Academy of Hospice
Physicians, later known as the American Academy of Hospice and Palliative
Medicine. Further progress was made in the 1990s when the Institute of
Medicine, the American College of Physicians, and the American Board of
Internal Medicine all highlighted the need for greater physician competency
in the care of persons with terminal illness.
Several key developments occurred in the 1990s. National representative
bodies appeared to take a more professionalized approach to their activities,
giving greater emphasis to palliative care as a specialized field of activity (the
National Hospice Association became the National Hospice and Palliative
Care Association; the American Academy of Hospice Physicians became the
American Academy of Hospice and Palliative Medicine). At the same time,
two major foundations developed extensive programmes concerned with
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186 To Comfort Always

the improvement of end-​of-​life care in American society (the Robert Wood

Johnson Foundation created the Last Acts initiative; and the Open Society
Institute established the Project on Death in America). An influential report
by the Institute of Medicine (IoM), published in 1997, sought to strengthen
popular and professional understanding of the need for good care at the end
of life.111 This was followed in 2001 by a further report from the IoM, listing
ten recommendations addressing the role of the National Cancer Institute in
promoting palliative care.112 In 2004, the National Institutes of Health held a
‘State-​of-​the-​Science’ meeting on Improving End-​of-​Life Care that brought
together prominent clinicians and researchers to focus on defining end of life,
understanding major considerations related to end-​of-​life care, and develop-
ing interventions for symptom management, social and spiritual care, and
caregiver support.113
The American Board of Hospice and Palliative Medicine (ABHPM) was
formed in 1995 to establish and implement standards for certification of phy-
sicians practising hospice and palliative medicine and, ultimately, for accredi-
tation of physician training in the discipline. The ABHPM created a certifi-
cation process that paralleled other member boards of the American Board
of Medical Specialities (ABMS). A paper published in 2000 by Charles von
Gunten and colleagues114 showed that in the first three-​and-​a-​half years of the
ABMS, and over the administration of seven examinations, 623 physicians
achieved board certification in hospice and palliative medicine. The authors
concluded that there was significant physician interest in seeking professional
recognition of expertise in caring for terminally ill persons and their families
through the creation of a specialty in hospice and palliative medicine, with
certification of physicians and accreditation of training programmes as key
elements in the process.
There were three challenges:
1. To develop a consensus within medicine on the appropriate organizational
base for a subspecialty in palliative medicine;
2. To seek ABMS approval for such a subspecialty within one or more exist-
ing specialities of medicine;
3. To seek formation of a residency review committee within the Accreditation
Council of Graduate Medical Education (ACGME) to implement accredit-
ation guidelines for palliative medicine fellowship programmes.114
Those seeking to promote the recognition of palliative medicine were aware
that modern medical specialities are built around the twin pillars of ac-
creditation of education and certification of competency. For the subspe-
cialty of hospice and palliative medicine to be taken seriously as a mature
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Anomalies, variations, and discontents about specializ ation 187

medical discipline, it required credible accreditation and certification pro-

cesses. Institutionalizing the specialty (through ABMS recognition and
ACGME accreditation) would help assure that the achievements of palliative
medicine were passed on to the next generation of physicians and that knowl-
edge in the field continued to grow.
In the three-​year period from the end of 2000 through to the close of 2003,
the number of diplomates almost doubled from 779 to 1 538. Another crit-
ical concern to the ABMS was whether there would be a sufficient number of
graduates of fellowship training programmes to sustain the field at a steady
state. In fact, the number of fellowship programmes quickly expanded from
just a handful to approximately 45, and it was anticipated that close to 100
fellows would graduate annually in the coming years.
Throughout these years, ABHPM staff and trustees carried out a strategic
campaign to educate both leaders and grassroots professionals in the pallia-
tive medicine field about the steps needed to bring about formal recognition.
It was considered important to build support that would be tangible and vis-
ible to the leadership of the other specialty disciplines. It was a huge challenge,
but in 2006, the ACGME and the ABMS approved and recognized a new spe-
cialty in hospice and palliative medicine.115
This involved a transition in the physician certification process from the in-
dependent ABHPM to the ABMS and, thereafter, in the accreditation of train-
ing programmes from another independent organization to the ACGME.116
In this process, hospice and palliative medicine became a subspecialty of no
less than 11 primary specialities, a first in the history of the ABMS. Formal
certification of physicians and accreditation of training programmes began
in 2008.
Meanwhile, in neighbouring Canada, where Balfour Mount first coined the
term palliative care in 1974,117 a Senate report in 2000 stated that no exten-
sion of palliative care provision had occurred in the previous five years, and
it set out recommendations for further development among the country’s 600
services.118 In Canada, following serious and detrimental delays in the eyes of
one commentator,119 specialty status for palliative medicine was not attained
until 2014.

Anomalies, variations, and discontents

about specialization
There are some major anomalies in how palliative medicine has gained rec-
ognition and accreditation, with widely differing standards, timescales, and
expectations in the specialist training programmes of different countries. It
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188 To Comfort Always

has been noted that ‘the original heated debate that accompanied the develop-
ment of palliative medicine as a medical specialty in the United Kingdom in
1987 has continued in all other countries where the effort has been made to
develop the specialty’.120 At the same time specialty recognition can be seen as
a turning point in hospice and palliative care history, opening up the field to
formal recognition, scrutiny, and greater public awareness.121
For some, specialization was key to palliative care’s integration into the
mainstream health system, and a major platform upon which to develop an
evidence-​based model of practice crucial to long-​term viability. Others balked
at the undue emphasis of physical symptoms at the expense of psychosocial
and spiritual matters. Just a few years after it achieved specialist recognition
in the United Kingdom, Michael Kearney, a St Christopher’s-trained, Irish
palliative medicine physician, raised concerns about a specialty narrowly
bounded by the practice of ‘symptomatology’, and thereby failing to create the
conditions for deeper, personal ‘healing’.122 In a later work, he emphasized the
need for palliative medicine to draw upon Greek traditions associated with
Aesculapian healing and for these to be integrated with the modern science of
symptom control.123 Likewise, questions were raised about whether palliative
medicine was really specialist territory and not, more properly, the domain of
the generalist. Why had there been so little discussion on why specialization
in palliative medicine came about, whether it was the most appropriate way to
address acknowledged deficiencies in care, and whether it could be sustained
in the long term? Examining the factors that contributed to the evolution
of palliative medicine as a specialty, some even declared that its future was
in doubt.121 As the specialty developed, its attention tended to focus on pain
and symptom management as a set of problems within the relief of suffering,
giving weight to the charge of creeping medicalization.124 There was a sense
that the only aspect of Cicely Saunders’s concept of total pain that received
full attention was that concerned with physical problems.
One theme that can be identified across all these developments is the rec-
ognition that palliative care is an area of medicine for which the healthcare
system as a whole should take responsibility. This found its most articulate
expression in the concept that palliative care should be seen as a public health
issue,125 and that the knowledge and skills of palliative care must be translated
into evidence-​based, cost-​effective interventions that can reach everyone in
the population. This would require governments to adopt policies in support
of palliative care at all appropriate levels of the healthcare system, and for
these policies to have community support and endorsement. The WHO was
the most powerful advocate of this approach, although it later found favour
with palliative care experts in many contexts.
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Anomalies, variations, and discontents about specializ ation 189

By the early twenty-​fi rst century, a growing commitment to the evidence

base was emerging in palliative medicine, though several reviewers still
found this a rather fragile enterprise and made claims for the particular
problems faced by palliative care in assessing its practice by such means.126,
127
Two forces for expansion were, however, clearly visible. First was the im-
petus to move palliative care further upstream in the disease progression,
thereby seeking integration with curative and rehabilitation therapies, and
shifting the focus beyond terminal care and the final stages of life. Second
was a growing interest in extending the benefits of palliative care to those
with diseases other than cancer in order to make ‘palliative care for all’ a
reality. The new specialty was delicately poised. For some, such integration
with the wider system was a sine qua non for success; for others it marked
the entry into a risky phase of new development in which early ideals might
be compromised.
It had been suggested that palliative medicine had the advantage of being a
new and emerging specialty. It was relatively unencumbered by vested inter-
ests and capable of avoiding the mistakes made in other areas of medicine—​in
particular, the risk of achieving a lot for a few, while the needs of the ma-
jority remain unmet.28 For such an approach, it was important to develop a
worldwide perspective, accompanied by specific knowledge of local problems
and issues and how they might be overcome. Careful thought also needed to
be given to the contribution that specialization in palliative medicine could
make to the global need for appropriate care of those with advanced disease
and those facing death. The fate of palliative medicine would be only one of
the factors to determine how dying people were cared for in the future.

Notes
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November 1995.
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October 2001.
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67. Shabeer C, Kumar S (2005). Palliative care in the developing world: A social experi-
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69. Hospice History Project: David Clark interview with MR Rajagopal, 24
January 2003.
70. Hospice History Project: Michael Wright interview with Ednin Hamza, 22
September 2004.
71. Hospice History Project: Jenny Hunt interview with Faith Mwangi-​Powell, 14
November 2004.
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75. Harding R. Higginson IJ (2005). Palliative care in sub-​Saharan Africa. Lancet, 365
(9475):1971–​7.
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78. International Association for Hospice and Palliative Care. IAHPC List of Essential
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79. Harding R (2006). Palliative care: A basic human right. id21 Insights Health 8
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81. Ibid. note 35.
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85. World Medical Association. WMA declaration on end-​of life medical care. Available
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86. ten Have H, Janssens R (2001). Palliative Care in Europe, Concepts and Policies.
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87. ten Have H, Clark D (2002). The Ethics of Palliative Care: European Perspectives.
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developments in seven European countries. Palliative Medicine, 14(6):479–​90.
89. Gronemeyer R, Fink M, Globisch M, Schuman F (2005). Helping People at the End of
Their Lives: Hospice and Palliative Care in Europe. Berlin, Germany: Lit Verlag.
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93. Wright M, Wood J, Lynch T, Clark D (2008). Mapping levels of palliative care de-
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101. Centeno C, Noguera A, Lynch T, Clark D (2007). Official certification of doc-
tors working in palliative medicine in Europe: Data from an EAPC study in 52
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102. Hospice History Project: David Clark interview with Stein Kaasa, 5
November 2004.
103. Clark D (2010). International progress in creating palliative medicine as a special-
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Board of Hospice and Palliative Medicine (2000). Physician board certification in
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Palliative Medicine, 9(6):1240–​2.
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64–​7. London, UK: Hodder Arnold.
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ritory? Journal of the Royal Society of Medicine, 91:568–​72.
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123. Kearney M (2000). A Place of Healing. Working with Suffering in Living and Dying.
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tion, Social Science and Medicine, 34 (12):1363–​75.
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care. Journal of Pain and Symptom Management, 33(5):486–​93.
126. Higginson I (1999). Evidence based palliative care. British Medical Journal,
319:462–​3.
127. Keeley D (1999). Rigorous assessment of palliative care revisited. Wisdom
and compassion are needed when evidence is lacking. British Medical Journal,
319:1447–​8 .
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197

Chapter 7

Palliative medicine: Historical

record and challenges
that remain

Figure 7.1 Eduardo Bruera (1955–​)

Born and trained in medicine in Argentina, Bruera moved to North
America in the mid-​1980s to pursue a developing interest in palliative
medicine. From positions in Alberta and then Texas, he supported an
unprecedented range of clinical studies, which helped establish the
initial evidence base for the new specialty. He also took on a strong
international leadership role and became one of the few palliative
care physicians who seemed equally at ease in the clinic, the research
conference, or the policy forum.
Reproduced by kind permission of Eduardo Bruera. Copyright © 2016
The University of Texas MD Anderson Cancer Center.
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198 To Comfort Always

Assessing the past and contemplating the future

In concluding this work, it is time to do two things.
First, we must assess the progress that palliative medicine made over the
period of 100 years—​from the publication of William Munk’s key work in
1887, to the first recognition of the specialty in the United Kingdom, in 1987.
This chapter will return to cover that ground, highlighting key forces, deter-
minants, and opportunities, leading us to an assessment of what was achieved
and the implications for further development.
Second, the chapter will go beyond this time period to consider some of the
practical and conceptual challenges identified into the early decades of the
twenty-​first century, and the prospects for overcoming them. Some of these
issues have already been explored in Chapter 6. Here the record is less clear,
as the issues and debates are still underway and have not yet been resolved.
For this later period, therefore, judgements are not so easy to formulate. As we
come closer to the present day, critical reflection may be all the prudent scholar
has to offer. But while writing this in the summer of 2015, when interest in
hospice and palliative medicine worldwide is achieving greater interest and
recognition than perhaps ever before, it would be inconsiderate to not at least
touch further—​if not exhaustively—​on this period and the issues raised by it.

A century of development
We have seen that the field of palliative medicine was forged in a crucible
of wider changes, not only in medicine but affecting society as a whole. Its
origins coincided with the era of modernization, urbanization, population
growth, and increasing mobility. We are still living with the consequences
and out-​workings of such changes. Care of the dying began to crystallize
as an area of particular medical interest at a time when the epidemiological
transition was transforming the social circumstances of death; from that of
a visitor who came unawares, to one where protracted dying came to be both
anticipated and more commonplace. In this context, fears shifted from reli-
gious and existential concerns about what might lie beyond the grave, to more
direct material anxieties about the process of dying itself.
For medicine, this created interesting possibilities. If ministers of religion
were retreating from the deathbed, doctors may then become more active there.
A space was opening up that could prove congenial to medical discourse and
practice, and provide fertile ground for innovation and expansion. First, however,
‘dying’ must be diagnosed and its signs and symptoms described. Nineteenth-​
century physicians created a nosology of dying. They began to treat dying as if it
were a disease, with its own onset, progression, and natural history. This could
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A century of development 199

then lead to estimates of prevalence, trends, and population characteristics—​

not of those dying, but of the conditions and characteristics they exhibited. It
could also form the basis for clinical judgement and knowledge to be shared
with others. The nineteenth-​century doctors described in Chapter 1 were at the
forefront of such developments. They reflected on their clinical experience with
the dying and wrote about it for the benefit of fellow physicians.
However, as they did so, they encountered problematic aspects of clinical
judgement. These touched on moral and religious matters. What was the role
of medicine at the bedside? Should medicine always seek to relieve suffering, or
might the endurance of pain and other symptoms be, in some instances, a nec-
essary evil in order to attain a greater good? We have seen that pain in the dying
process was, in the earlier nineteenth century, presumed to be a route to quicker
entry into heaven. But if pain-​relieving formulations were at hand, might their
use lead to a different perception of the meaning of suffering, something that
could be overcome by human agency, wisdom, and knowledge—​but there-
fore having no intrinsic merit? Over time, this came to be the settled view of
medicine. Pain was unnecessary, dysfunctional, and an enemy to be overcome.
Nevertheless, by the closing of the nineteenth century, this had already crystal-
lized into a fundamental question. Are there certain circumstances in which
medicine should intervene to end suffering and, in so doing, end life itself?
William Munk’s foundational text, which forms the conceptual, if not ex-
actly chronological, starting point for this book, appeared when the term eu-
thanasia was about to change significantly in meaning. His work was the high
watermark for euthanasia as the idealized easeful death. For him, it meant
safe passage from the world with the accompanying ministrations of physi-
cian, family, and friends. Soon it would come to mean intervention by doc-
tors deliberately to end life when suffering had become unbearable. Others
shared Munk’s goals relating to easeful death, albeit a limited circle. His
work was met with positive reactions in Britain and America. In both these
countries, homes for the dying were also coming into existence. However,
they did not have much in the way of material resources and they seem to
have been rather cut off from the professional world of academic and elite
medicine. Usually run by religious orders of nuns or by religiously inspired
women, they nevertheless created the first concentrated institutional focus
on the care of those approaching death. It is unclear why these places elicited
so little in the way of innovative medical interest in the late nineteenth and
early twentieth centuries. Certainly, they had on their own dedicated staff
doctors, a few in full-​time positions, and most as attending physicians. An
example was Howard Barrett, who documented his activities assiduously in
a series of annual reports, which were later to be read by and to influence
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200 To Comfort Always

others. However, generally doctors in the homes for the dying were preoccu-
pied with their day-​to-​day clinical responsibilities, mindful of the charitable
status of the places in which they worked, and perhaps temperamentally not
disposed to personal aggrandizement or influence. Moreover, patients at the
end of life were neglected by the charitable hospitals, which wanted little to do
with the care of the dying and sought to project themselves as modern centres
for innovative practice, unwilling to admit the terminally ill and moribund,
and focused more on goals of treatment and rehabilitation.
At the same time, the terminal care homes were well documented, as they
kept careful records that have endured. Their annals and reports were written
for particular institutional or fundraising purposes, which adopted certain
stylistic conventions. They tended to highlight idealized examples of good
care, as well as of spiritual enlightenment reached against the odds, but they
provide a basis for understanding the approach adopted—​and this was one
readily accepted by twentieth-​century innovators like Cicely Saunders, who
saw in them much to emulate and adapt.
It remains unclear why there was such a dearth of medical writing about the
end of life in the final years of the nineteenth and the early decades of the twen-
tieth centuries. From the publication in Britain of Munk’s work in 1887, it was
a very long pause before Alfred Worcester’s lectures appeared in the United
States on the care of the ageing, the dying, and the dead in 1935.1 Worcester
offers some explanation for why this might be the case. The care of the aged and
dying, he states, had not become an area for specialist interest; rather it was one
left to general practitioners, who in the main had ceased to communicate to
the wider profession the results of their experience, with the result that ‘neither
medical science nor the art of practice advances’. Likewise, the medical litera-
ture on ‘senescence’, he opined, was dreary, dated, and largely repetitious. In
the care of the dying, he judged medical practice to have deteriorated in the half
century preceding the publication of his book. Doctors had abandoned their
dying patients to the care of nurses and sorrowing relatives: ‘This shifting of
responsibility is un-​pardonable. And one of its bad results is that as less profes-
sional interest is taken in such service less and less is known about it.’
Extrapolating from such a perspective, we might infer that in the first half
of the twentieth century the medical care of the dying was deteriorating.
Neglected in medical schools, devoid of leaders and champions, unduly asso-
ciated with religious associations, and focused mainly on patients who could
make little improvement, the judgement of early twentieth-​century medicine
was that ‘nothing more can be done’ for the obviously dying patient. At best,
such pessimism could be tempered by a paternalistic benevolence on the part
of family doctors who did remain with their dying patients. For them, the
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A century of development 201

liberal, if clumsy, use of morphine was the last resort of treatment. A collec-
tion of medical writings on the care of the dying published in Britain in 1948
could therefore amount to little more than an assemblage of anecdotes and
aphorisms. Poor care at the end of life, at least by omission if not by intention,
must have prevailed for many dying people in Britain—​and elsewhere in the
western world—​in the first half of the twentieth century.
The 1950s gives us our first systematic look at the nature of the problems. The
abject social condition of those dying from a stigmatizing disease like cancer
was first investigated in Britain in the period after World War II. The stra-
tegic direction of this work initially came from outside the National Health
Service. However, the quickening interest of doctors and of some researchers
began to attract attention. Major journals produced editorials on terminal
care; their editors published new studies that threw light on late diagnosis of
cancer, the care of older people at the end of life, and the prospects for new
ideas and approaches began to take hold. There was also a growing interest in
pain relief, the understanding of the mechanisms of pain and the wider skills
required for appropriate pain management. The prominent voice in much of
this—​achieved against the odds of her gender, her late entry into medicine,
her overtly Christian stance, and her resolve to set up a charitable institution
to further her goals—​was that of Cicely Saunders.
Saunders galvanized interest and support from like-​ minded people in
Britain, America, and elsewhere. She created a model that was widely emulated
and adapted. She stood out in the field for her energy, determination, global
reach, and above all, her ability to define an aspect of care that had become
lost to modern medicine, but which resonated with the western zeitgeist of
the 1960s and 1970s. This vision and local action, however, as developed by
Saunders and her contemporaries, were not enough to take forward ‘at scale’
the work of caring for people at the end of life. This would require the devel-
opment of a new field of medicine. The particular character of the work had
to be demonstrated in its clinical dimensions, and in relation to research and
teaching. This was incremental, empirical activity, through which pioneering
physicians, services, patients, and families, by their direct involvement, dem-
onstrated the claims and practices of hospice and palliative medicine.
The origins of modern palliative care lie in a movement to improve care
of the dying that configured first around notions of hospice care. Pioneers
emerging from within the healthcare system would not come until later. From
the 1950s and 1960s, activists such as Cicely Saunders and Florence Wald
looked to a hospice tradition that had got underway in the late nineteenth-​
century religious homes for the dying, which had developed in France,
Britain, America, and Australia. Nevertheless, these were a mixture of people
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202 To Comfort Always

with and without religious inspiration. They sought to reinvent older hospice
traditions in a new guise and in so doing to challenge the growing western
tendency to deny death and to sequestrate the dying. The ‘hospice movement’
was a small revolution against prevailing ‘death-​ways’ in western culture. In
some instances, it was a reaction against meddlesome medicine and futile
interventions. In others, it was stimulated by the medical neglect of the dying
in healthcare systems that prioritized cure and rehabilitation over the needs
of those close to death. In time, it became a recognized area of specialization
and indeed a career pathway.
The development of modern hospice care had many of the characteristics of
a new social movement. It was associated with a single issue and fostered by
strong advocacy, as well as charismatic leadership. It grew out of communities
of interest, communities of practice, and communities of place. In many in-
stances, services were initiated without the endorsement of the formal health-
care system, but with strong local support. This often led to tensions and con-
frontation as the hospice pioneers sought recognition for their cause in the
face of scepticism, indifference, and bureaucratic inertia.
To succeed more widely, and thereby meet population level needs, it became
increasingly clear that hospice ideas and practice would need to find a place
within the mainstream of healthcare systems and structures. This was rec-
ognized in the early 1970s by the Canadian surgeon, Balfour Mount, who
also took the view that the work needed a different nomenclature. He coined
the term palliative care, drawing not only on established medical notions of
palliation, but also on wider meanings of the word in relation to ‘cloaking’
or ‘shielding’. The first named palliative care services soon began to appear.
As we have seen, the 1980s were a period of intense development in many
countries, during which journals, training programmes, and major confer-
ences came to be dedicated to palliative and hospice care. New services were
being founded, international links were forged, and new organizations came
into existence to take forward the work of promoting palliative care to the
wider public, to fellow professionals, and to policymakers, and people of in-
fluence. The United Kingdom was on the leading edge of this curve, and in
1987, seemingly with great alacrity, it was the first country to recognize pal-
liative medicine as a specialist area of activity.
The new services were also diversifying and palliative care began to be
delivered not only in specialist inpatient units and hospices, but also in the
wards and outpatient clinics of acute hospitals, in the community, in residen-
tial care settings, and in people’s own homes. Commensurate with this was
a growing interest in research, evaluation, and attempts to develop policies
and strategies for palliative care delivery for whole jurisdictions. Palliative
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T went y-first-century issues 203

care was taking on the characteristics of a field, which could be recognized

alongside other specialities in health and social care and bore the recogniz-
able hallmarks of an evidence base, standards and guidelines, codes of train-
ing and practice, and professional accreditation.
Professional bodies proliferated and emphasized the multidisciplinary
aspects of palliative care as a specialism that involved medicine, nursing,
social work, psychology, spiritual and religious support, and the involve-
ment of allied health workers and volunteers. Some of these developed their
own subspecialized journals, in nursing and social work, which might seem
contradictory in a field that was so committed to multidisciplinary and
multi-​professional approaches. From the mid-​1990s, research studies were
conducted that mapped the differential development of palliative care in
specific regions of the world, and also globally. Understanding grew of the
common elements that united the palliative care ethos, but also of internal
differences, the variations in local practice cultures and assumptions, and
the specific ethical challenges to which they gave rise. As the global palliative
care landscape became more richly articulated, so too it became possible to
see the variations in approach, the struggle to adopt a common language for
the specialism, and the requirement for medicine to articulate its particular
role within it.

Twenty-​first-​century issues
Palliative care in its modern guise seeks to prevent and alleviate suffering as-
sociated with life-​limiting illness, and it is particularly associated with care at
the end of life and in bereavement. Its principles are holistic and multidisci-
plinary, focusing on physical, social, psychological, and spiritual concerns in
the context of serious illness. To these ends, it engages the skills of medicine,
nursing, social work, psychology, allied health professions, family members,
and often volunteers and wider communities. It has developed specific exper-
tise in the understanding and management of pain associated with advanced
disease, and it provides expertise in relation to other, often complex, symp-
toms that may occur across the trajectory of illness. As we have seen, within
the broader multidisciplinary landscape of palliative care, there also exists
the specific area of specialization called palliative medicine. The purpose of
this book has been to better understand the history and character of this field
of medicine.
Palliative care has attracted the interests and commitments of those well
beyond the world of healthcare delivery, albeit focused around a specific
aspect of care. It is much spoken about, debated, and commented on in the
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204 To Comfort Always

mainstream and social media, among policymakers and politicians, as well as

in popular writing and debate. Public engagement has become a key element
in the palliative care ‘project’, as it seeks to use social marketing and other
techniques to promote its interests and get its message to wider audiences. In
turn, the work of palliative care has captured the interests of artists and writ-
ers, film-​makers, and photographers, who see in it a crucible of contemporary
debates around the meaning of illness and care in society and, in particular,
the issue of how we die.
However, palliative care is also a multifaceted field of specialization, along
with associated academic endeavours in teaching and research, with a grow-
ing recognition among professional societies, scientific funders, universities,
and training establishments. It has been drawn to a public health paradigm
when considering levels of need and appropriate policies and services for de-
livery, together with suitable quality assurance and evaluation. It also makes
an expanding claim for recognition as a human right. Increasingly, the reach
of palliative care extends to health policymakers, politicians, global health
organizations, and related discourses.
Palliative care has a close but sometimes complex relationship with hospice
care, and this differs across countries of the world. Many varieties of hospice
and palliative care delivery can now be observed in a wide range of settings.
While few of these are supported by proven evidence of success, they do tes-
tify to the rich field of activity and the imaginative and diverse approaches
that have been developed in different resource, cultural, and healthcare con-
texts. Palliative care is also seeking to develop an appropriate relationship
with other areas of the healthcare system, in particular those primarily fo-
cused on curative treatments, rehabilitation, or the management of long-​term
conditions. It faces specific challenges in the light of changing demographics,
epidemiology, and patterns of symptomatology.
Countries and cultures are at varying points on the epidemiological tran-
sition away from infectious disease as the primary cause of death, to the
slower trajectory of death from non-​communicable and chronic conditions.
Healthcare systems vary enormously in their levels of preparedness for the
care of people at the end of life. There are different ethico-​legal systems in
which jurisdictions approach the issue of dying. There are differing local
moral worlds of dying, death, and bereavement; often in flux due to wider
social forces and sometimes creating tensions over the body of the dying
person. In addition, there is little unanimity about appropriate interventions
at the end of life and the correct role of medicine within them. The evidence to
better understand these issues is emerging, but often policy and practice are
developed without appropriate foresight and reflection.
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Definitional issues and wider understanding 205

The distribution and availability of palliative care globally is known to

be highly inequitable, being concentrated in a small number of countries,
and this has led the World Health Assembly to call on all governments to
give it higher priority. It has been estimated that less than 10 per cent of
those who might benefit from palliative care currently have access to it
worldwide. Only 20 countries have achieved a significant degree of pal-
liative care development as demonstrated by levels of service provision,
education, drug availability, research, financing, and policy recognition.
Palliative medicine is recognized as a specialist field of activity in around
25 countries worldwide.
For some years the United Kingdom has been seen as the benchmark coun-
try that heads the league table in these developments. By 2005, there were
some nine chairs in medicine and nursing related to palliative care in the
United Kingdom, as well as three chairs occupied by social scientists with a
major interest in the field. It was also home to significant research centres,
such as the Cicely Saunders Institute, led by Professor Irene Higginson—​a
leading figure in the move to establish an evidence base for the specialty. By
2014, there were 13 chairs in British universities in palliative medicine alone.
Yet, a study of the research outputs from these facilities for the years 2001–​
2008 found that there were less than 40 UK-​based academics with a sustained
commitment to the field.2

Definitional issues and wider understanding

There has been significant debate—​and no lack of disagreement—​about the
various definitions and models of palliative, end-​of-​life, and hospice care that
now exist. The World Health Organization (WHO) has produced two defini-
tions, in 1990 and in 2002, but many more are described in the subsequent
literature. These definitional problems continue to inhibit clarity of thought
and action in the field.
For example, a paper focusing on definitions of the term palliative medi-
cine and palliative care in two languages found a total of 37 English and 26
German versions, confirming a lack of a consistent meaning about key terms
and approaches.3 This also applied to cognate areas. In 2004, a National
Institutes of Health State-​of-​t he-​Science Conference statement noted: ‘There
is no exact definition of end of life; however, research supports the following
components: (1) the presence of a chronic disease(s) or symptoms or func-
tional impairments that persist but may also fluctuate; and (2) the symptoms
or impairments resulting from the underlying irreversible disease that re-
quire formal either paid, professional, or informal unpaid or volunteer care
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206 To Comfort Always

and can lead to death.’4 Surprisingly, a 2012 volume offering an international

public health perspective on the subject offered no clarification, often using
end-​of-​life care interchangeably with palliative care.5
In 2011, the Washington Post 6 reported on the findings of a recent opin-
ion poll in the United States.7 At that time and by a wide margin, Americans
believed it more important to enhance the quality of life for the seriously
ill, even if this meant a shorter life (71 per cent), rather than to extend life
through every medical intervention possible (23 per cent). More than half of
all Americans (55 per cent) believed that the healthcare system has the re-
sponsibility, technology, and expertise to offer treatments and to spend how-
ever much it takes to extend lives. This compared to 37 per cent who thought
the healthcare system spends far too much trying to extend the lives of ser-
iously ill patients. Americans, however, were largely unfamiliar with the term
palliative care (only 24 per cent said otherwise), especially compared to end-​
of-​life care (known by 65 per cent) and hospice care (86 per cent). Yet, nearly
two out of every three Americans (63 per cent) have had personal or family
experience with palliative care, end-​of-​life care, or hospice care. A strong ma-
jority believe there should be a more open debate about public policies re-
garding palliative care options (78 per cent). Respondents also agreed that
educating patients and their families about these issues is important (97 per
cent) and think a public dialogue will provide more information about care
options (86 per cent). Yet roughly half (47 per cent) of respondents across
all political affiliations say they worry that emphasizing palliative and end-​
of-​life care options could interfere with doing whatever it takes to help pa-
tients extend their lives as long as possible.8 These contradictions seem to be
at the heart of the modern orientation to end-​of-​life care. They constitute the
fragmented moral terrain on which palliative medicine—​at least in the rich
world—​must operate.
In the same year, 2011, a similar study was conducted on the other side
of the Atlantic in Northern Ireland. While the majority of respondents (83
per cent) reported that they had heard the term palliative care, most revealed
they had little or no knowledge of its meaning: over half claimed to have little
knowledge, while a fifth stated they had no understanding of the concept of
palliative care at all. Women, however, reported higher levels of knowledge
than men. Those with the most knowledge tended to work in the healthcare
system. The majority defined palliative care as pain relief for people with ter-
minal illness at the end of life with the aim of achieving a peaceful death.
Although participants were not asked to specify conditions, many associated
palliative care with cancer and care of older people. When respondents were
asked to reflect on the aims of palliative care, the majority cited the delivery
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Definitional issues and wider understanding 207

of comfort (82 per cent), pain relief (81.3 per cent), and dignity (76.3 per cent)
as priorities.9
Back in the United States, another study conducted in the same year found
similar results.10 The term palliative care appears to have little or no meaning
to American healthcare consumers. Yet, once informed, they seem extremely
positive about it and want access to this care if they need it: 95 per cent of
respondents agree that it is important that patients with serious illness and
their families be educated about palliative care; 92 per cent of respondents say
they were likely to consider palliative care for a loved one if they had a ser-
ious illness; 92 per cent of respondents say it is important that palliative care
services be made available at all hospitals for patients with serious illness and
their families. The study was particularly important in that it developed and
tested a ‘new language’ definition of palliative care and suggested it should be
used when defining or describing palliative care for consumers.
Palliative care is specialized medical care for people with serious illnesses. This type
of care is focused on providing patients with relief from the symptoms, pain, and
stress of a serious illness—​whatever the diagnosis. The goal is to improve quality of
life for both the patient and the family. Palliative care is provided by a team of doc-
tors, nurses, and other specialists who work with a patient’s other doctors to provide
an extra layer of support. Palliative care is appropriate at any age and at any stage in
a serious illness, and can be provided together with curative treatment.10

It is a paradox, therefore, that while the field of palliative care, and of pallia-
tive medicine within it, has been growing, and expanding its reach, it remains
poorly understood by the wider public. An interesting attempt to address this
came from the United States in 2014 when the film You Are a Bridge appeared
on YouTube, supported by the group Get Palliative Care,11 itself a public arm
of the Center to Advance Palliative Care12 led by Dr Diane Meier, one of the
leading US figures in palliative care. Aimed at the general public, the short
animated film explains what palliative care is and where it is relevant.
Palliative care is a specialised form of medical care specifically designed for people
with serious illness. Its main goal is to improve your quality of life by relief from the
symptoms, pain, and stress that are an inevitable bi-​product of both the disease and
the medical intervention.13

Such a definition should not be seen as having, and is perhaps not intended
to have, universal relevance. It appears to be one crafted specifically for the
American healthcare industry and to have the modern healthcare consumer
as its target audience. Nevertheless, in the context of the history described in
this book, it seems to have travelled a long distance from the goals of both
Munk and Saunders. It contains no mention of suffering in any wider existen-
tial way, and strikingly, the language of death and bereavement is completely
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208 To Comfort Always

absent. Highly instrumental in its orientation, it appears the converse of

Saunders’s famous (but unreferenced) aphorism: ‘Don’t just do something,
sit there.’

The clinical realm

As palliative care developed into a recognized field of practice, it sought to
define and circumscribe its areas of interest and competency. This has re-
mained a matter for debate and contestation.
As we have seen, in the nineteenth century, medical writers such as
William Munk focused their attention on easeful death as their principal
objective, when efforts to prolong life were no longer productive. Munk,
in common with his predecessors from earlier in the century, used the
term euthanasia to describe this. He was referring to the relief of suffering
through judicious use of pain medication, to the management of the sick
room and deathbed in order to achieve dignity and comfort, and to the role
of religious solicitude in preparing the dying person for a life to come, sur-
rounded by family and friends. By such means, the idealized good death was
to be realized.
However, as the nineteenth century came to a close, the meaning of eu-
thanasia quite quickly began to change. If suffering might be relieved by the
administration of strong opiates, such as morphine and diamorphine, which
had been synthesized and put into commercial production in earlier decades,
might suffering also be prevented by more direct intervention? Moreover,
might indeed death be hastened deliberately by the physician in order to
achieve this? Now some doctors began to take a serious interest in this issue,
which also became a matter of public debate and controversy. As the public
influence of religion in western culture moved into a phase of decline, atten-
tion focused less on the meaning of death and the afterlife, and more on the
process of dying and the ability to exert control over it. Medicine had become
the central influence over the deathbed.
Therein developed a struggle; for if some doctors endorsed the new defi-
nition of euthanasia and supported its legalization, others were opposed to
this on religious and moral grounds and sought to direct their efforts to im-
proving care in advanced illness and, thereby, to thwart the need for medi-
calized killing. This ethical divide became an increasingly marked feature of
western medical culture during the twentieth century, and by the start of the
twenty-​first century, was also in evidence in some low and middle-​income
countries. It fuelled an ethical debate significantly influenced by Christian
ideas about the sanctity of life, but over time, it was taken up in other religious
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Definitional issues and wider understanding 209

and cultural contexts. By the second decade of the twenty-​first century, it ap-
peared to have become a matter of global interest.
Perhaps the strongest voice in opposition to euthanasia and in support of
palliative care was that of Cicely Saunders herself. A lifelong opponent of eu-
thanasia, she argued consistently that demand for assisted death diminishes
wherever the principles of good palliative care are in evidence. Her central
instrument in support of this claim was the concept of total pain, which rec-
ognized that the suffering of a person at the end of life can be multifaceted—​
physical, emotional, social, psychological, and spiritual. It was to suffering at
this level that she addressed her attention, with notable success. However, for
Saunders, the practice of hospice and palliative care was not simply a med-
ical service; it was enriching of society and a measure of its moral worth.
This enabled palliative care to find a wide audience, beyond that of healthcare
workers and specialists. It attracted volunteers, fundraisers, and well-​w ishers
convinced that the ability to control pain and other symptoms and the de-
termination to give dignity to the dying and bereaved were skills and values
worth promoting across the whole of society.
After the death of Cicely Saunders in 2005, it is possible to discern a con-
tracting of this broader vision. New mantras emerged about choice in dying,
neo-​liberal policies served to lessen collective responsibility for the care of
those at the end of life in favour of individualist and consumerist orientations
as to how we should die. Within the field itself, expansive thinking about the
meaning of care gave way to more reductionist efforts to measure effective-
ness, assess cost-​benefits and ‘roll-out’ strategies through guidelines and poli-
cies. The world of palliative medicine seemed to turn its attention to a number
of discrete questions. Its leaders were mainly visible when responding to
crises of care, such as those associated with the Liverpool Care Pathway, and
less in evidence in setting an agenda for development and improvement. They
were however attentive to some key ethical issues relating to clinical practice,
where medical interventions at the end of life can be challenged by pervasive
moral dilemmas.

Double effect, refractory symptoms, and sedation

The control of pain in palliative care has been the topic of much scrutiny and
debate. The principle of double effect has been used to justify the administra-
tion of proportionate medication to relieve pain, even though it may lead to
the unintended, albeit foreseen, consequence of hastening death; for exam-
ple, by causing respiratory depression. Some have argued that there is little
evidence to support the view that such analgesics carry this risk. From this
perspective, the belief in the double effect of pain medication perpetuates the
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210 To Comfort Always

under-​treatment of physical suffering at the end of life. At the same time, the
concept of double effect in the use of opioids has also been used to support
the legalization of physician-​assisted suicide and euthanasia. This position
typically takes one of two forms. First, it is argued that, as hastening death
by drugs is already being done and is ethical, medical practice should be ex-
tended to allow physician-​assisted suicide. The second argument is that be-
cause physicians are already hastening death, euthanasia should be legalized
in order to provide safeguards, checks, and appropriate controls.14
Clinical practice in palliative care has acknowledged that at times refractory
symptoms, often highly distressing to patients, family members, and staff, can
be difficult to manage. Interest has grown in using deep sedation (variously
termed) as an approach to this problem. Comparative studies show how rates
of sedation at the end of life vary between settings and countries. The notion
developed that dying for many had come to involve a set of decision-​making
processes, some of which result in the option to sedate the patient. This might
be on a temporary basis, or until such time as death ensues. It might also be
at the request of the patient. Palliative care was then called on to produce
definitions, guidelines, and studies of this practice in order to give clarity and
transparency to its procedures. In this context, the focus was not on the use of
opioid drugs, but rather on benzodiazepines, such as midazolam. There was
also the need to distinguish the practice from euthanasia, usually explained
by the process of titrating the drugs to achieve sedation while maintaining
respiratory function and not hastening death.
A Cochrane Review appeared in 2015 addressing the issue of terminally
ill people who experience a variety of symptoms in the last hours and days
of life, including delirium, agitation, anxiety, terminal restlessness, dys-
pnoea, pain, vomiting, and psychological and physical distress.15 It noted
that in the terminal phase of life, these symptoms may become refractory
and unable to be controlled by supportive and palliative therapies specific-
ally targeted to these symptoms. Palliative sedation therapy is one poten-
tial solution to providing relief from these refractory symptoms. Sedation
in terminally ill people is intended to provide relief from refractory symp-
toms that are not controlled by other methods. Sedative drugs, such as ben-
zodiazepines, are titrated to achieve the desired level of sedation, which
can be easily maintained and the effect is reversible. The goal of the review
was to assess the best evidence for the benefit of palliative pharmacological
sedation on quality of life, survival, and specific refractory symptoms in
terminally ill adults during their last few days of life. The results show some
of the clinical and research challenges that exist in this area of modern
medicine.
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Definitional issues and wider understanding 211

There was insufficient data for pooling on any outcome, so no meta-​analysis

was possible, and the authors were reduced to reporting a narrative of the
outcomes. The searches resulted in 14 relevant studies, involving 4 167 adults,
of who 1 137 received palliative sedation. More than 95 per cent of the par-
ticipants had cancer. No studies were randomized or quasi-​randomized. All
were consecutive case series, with only three having prospective data collec-
tion. Risk of bias was high due to lack of randomization. No studies measured
quality of life or participant well-​being, which was the primary outcome of the
review. Only five studies measured symptom control, and each used different
methods. The results demonstrated that even when sedation was practised,
delirium and dyspnoea were still troublesome symptoms for these people in
the last few days of life. Control of other symptoms appeared to be similar in
sedated and non-​sedated people. Thirteen of the 14 studies measured survival
time from admission or referral to death, and all demonstrated no statistically
significant difference between sedated and non-​sedated groups. The authors
concluded that there was insufficient evidence about the efficacy of pallia-
tive sedation in terms of a person’s quality of life or symptom control. There
was evidence that palliative sedation did not hasten death, which had been a
concern of physicians and families in prescribing this treatment. However,
this evidence comes from low quality studies, so should be interpreted with
caution.

Other challenges—​changing trajectories

As the clinical practice of palliative care developed through the last quar-
ter of the twentieth century, other issues began to challenge its orientation.
Defined from the outset as a multidisciplinary endeavour, nevertheless the
role of medicine appeared to be primus inter pares. There was a tendency for
medical perspectives, medical assumptions and cultural practices, and medi-
cal solutions to frame the debate about how palliative care should develop.
This was often because palliative physicians were looking over their shoulder
at other specialities and seeking to keep pace with developments in cognate
fields—​oncology, geriatrics, cardiology, and respiratory medicine. It led some
external commentators to argue that a process of ‘medicalization’ was at work
within palliative care that would quickly dissipate its early, more holistic
intentions. There were also detractors from within, who cautioned against
palliative medicine becoming ‘just another specialty’, and for whom an over-​
emphasis on pain and symptom management seemed to be at the expense of
attending to the whole person—​including not only a person’s physical prob-
lems, but also social issues, spiritual, religious, or existential matters, as well
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212 To Comfort Always

as the needs of family caregivers, and matters of psychological and mental

health. It was as if the specialty of palliative medicine might make progress at
the expense of the early goals of palliative care.
Palliative care began with an unequivocal focus on patients and families
affected by cancer. It seemed that the widespread stigma associated with the
disease, the poor prognosis that existed in many instances, the fairly pre-
dictable progression, and the possibility of severe pain and other debilitating
symptoms all combined to make a perfect testing ground for the palliative
care ethos. This came to be known as the ‘rapid decline’ trajectory, and it ap-
peared to fit well with the perspective of hospice care, primarily focused on
the final months and weeks of life. Palliative medicine at first locked onto this
paradigm and gave particular focus to alleviating the challenging problems
associated with specific pain syndromes, as well as breathlessness, anorexia
and cachexia, anxiety, and depression—​a ll of which came to be seen as key
determinants of quality of life in patients with advanced cancer.
Over time, there were calls to extend the perceived benefits of palliative
care, beyond patients with cancer to those dying from—​and living with—​
other conditions. This meant two things. First, patients started to be seen for
whom the medical context was less familiar. Initially, this involved people
with neurological conditions, such as multiple sclerosis and motor neurone
disease, but in time it was extended to those with heart failure, stroke pa-
tients, people with dementias, as well as those affected by HIV/​AIDS. Second,
there was pressure to move palliative care interventions further upstream in
the disease progression to earlier stages of the illness, where palliation might
sit alongside curative treatments and interventions. Now palliative care began
to uncouple from the paradigm of terminal illness and eventually to reframe
itself as an extra layer of support for patients, right across the treatment tra-
jectory, with its various consequences and side effects.
The distinction between cancer and non-​cancer palliative care was in evi-
dence for a period starting in the 1990s, but became less commonly used over
time. This was driven by the growing recognition of multiple morbidities and
symptom burdens that occurred in medicine, which seemed particularly rele-
vant to palliative care. At the same time, cancer was in many western coun-
tries making the transition into a treatable disease, associated with the new
phenomenon of cancer survivorship, and of cancer as a chronic and/​or ‘social
care’ issue. Palliative care, therefore, had to focus on patients with complex
multiple problems, which might endure for potentially long periods. Attempts
were made to characterize these into specific trajectories of dying, but if these
seemed to make sense conceptually, they were found difficult to map onto
any empirical reality. In the West at least, the epidemiology of many cancers
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Definitional issues and wider understanding 213

migrated into that of a chronic disease and, at the same time, the concept of
multiple morbidities became increasingly recognized clinically, meaning that
the care of patients became more complex and protracted in a setting where
patterns of decline associated with frailty, dementia, and impoverishment
became more prevalent.
This shift was also associated with an ageing population. The baby boom-
ers drew attention to the growing reservoir of care needs in later life that
resulted from the heightened birth rate in the two decades before the mid-​
1960s. Moreover, at the same time these people were set to live longer lives,
as the improved healthcare and public health measures of the twentieth cen-
tury increased life expectancy. This in turn became a global issue. Around
58 million deaths occur in the world every year and this number may rise to
90–​100 million by mid-​century and beyond. This increase in the number of
deaths will be caused by a combination of population growth and population
ageing. The likely demand this will place on caregivers and services suggests a
humanitarian issue—​if not crisis—​of enormous scale and complexity.
If modern palliative care had begun in the 1960s and 1970s with the cer-
tainties of cancer as a terminal disease of predictable course, by the second
decade of the twenty-​first century it was located in far less predictable set-
tings. It now sat alongside curative interventions, closely tied in with the
needs of older people, but also subspecialized in paediatrics as well as in other
medical specialities. When accreditation for hospice and palliative medicine
was achieved in the United States, it was formalized as a subspecialty of no
less than 11 fields of specialist care. In each case, new knowledge would be
required to build a palliative care orientation matched to a specialist field of
medical intervention, as well as to the social dimensions of the underlying
disease type or the complexities of multiple morbidity. In short, the medical
landscape in which palliative care is required to operate has become far more
complex and nuanced in 2015 than it was 50 years earlier, when the first col-
laborations were developing between the early pioneers.

Assisted dying and palliative care

Like palliative care, the territory of assisted dying has its own problems of
definition. Some use the term to encapsulate events that might otherwise be
described as (physician-​) assisted suicide or voluntary euthanasia; although
mechanically they differ, at the heart of each is the positive choice for death.16
Assisted dying and euthanasia are terms that have proven notoriously difficult
to define and are subject to multiple interpretations.17 In these specific areas,
carefully crafted definitions produced by philosophers are often roughly han-
dled by the public and by protagonists who use distinct and separate terms
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214 To Comfort Always

interchangeably, or with a lack of clarity of meaning. This is a sociological

reality that can undoubtedly create a gulf between formal conceptual work
and the living world of disputation, action, and decision-​making. It is easily
witnessed in the inexact drafting of bills to legalize assisted dying that come
before parliaments around the world.
Nevertheless, in the same period that palliative care gained traction, so too
did debates and arguments in favour of the legalization of assisted dying—​
particularly in affluent countries. In the Netherlands, euthanasia was prac-
tised by physicians in a decriminalized context from the early 1990s onwards,
using a procedure of notification. The first legal case of euthanasia in the
world occurred in the Australian Northern Territories in 1995, although the
legislation was quickly reversed. Assisted suicide was approved by voters in
the US state of Oregon in 1994 and legalized in 1997; subsequent endorse-
ments occurred in Washington state (2008), Vermont (2013), New Jersey
(2014), and California (2016). In Switzerland, where the subject of suicide
tourism has attracted considerable debate, assisting a person to die is not an
offence in certain circumstances. Full legalization of euthanasia and assisted
suicide was passed in the Netherlands in 2001—​t he first national legislation
to do so. Belgium followed in 2002 with legalization of euthanasia only. In
Luxembourg, euthanasia and assisted suicide were legalized in 2009. The in-
stitution of active euthanasia has been legal in Colombia since 2015.
Across many other countries, parliamentary debates have taken place, laws
have been drafted, and wider public discussion gains momentum around
the theme of assisted dying—​how, in what circumstances, and with what
safeguards might some form of legislation be framed that permits choice in
dying—​a llowing persons a measure of control over the manner and timing
of their death? Nevertheless, as the European Court of Human Rights has
noted, there is no consensus in Europe on the ethics of assisted suicide and
indeed, the Council of Europe (2012) has stated: ‘Euthanasia, in the sense of
the intentional killing by act or omission of a dependent human being for his
or her alleged benefit, must always be prohibited.’18
The mainstream orientation of palliative care towards assisted dying is es-
sentially oppositional. It is rare to see palliative care practitioners endorsing
such practices and unusual for them to be viewed as a part of the delivery of
palliative care.
In the public consciousness, there might not be so much ‘clear water’ be-
tween the two positions however. The furore in the United Kingdom over the
widespread use of the Liverpool Care Pathway (LCP),19 for example, revealed
that from the perspective of relatives and patients themselves, ‘best palliative
care practice’—​w ithdrawing interventions, closely monitoring symptoms,
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Definitional issues and wider understanding 215

and aiming for the minimization of suffering and discomfort—​were seen

as a form of backdoor euthanasia. Indeed, the public discussion on this, the
review of the LCP, and its eventual withdrawal in 2013 may well have brought
to an end the era of what we might call ‘unconditional positive regard for pal-
liative care’ in the public consciousness.
The ideological orientation of palliative care practitioners has been to
oppose assisted dying because it is not needed when palliative care is fully
available. Moreover, of course, a subset opposes it on moral or religious
grounds. Supporters of assisted dying, who claim that palliative care can
never be the sole solution in all cases and contexts, challenge this thinking.
They argue for choice and self-​determination, suggesting that even the best
palliative care cannot always eliminate suffering. They also point out that
some consumers of healthcare services may not be attracted to the ethos of
palliative care for various reasons, such as its religious connections, its desire
to delve into spiritual and existential areas where it does not belong, or its un-
welcome associations with charity or volunteer involvement.
The protagonists have been engaged in a struggle where ‘dignity’ has become
the contested space, with each side claiming to provide it. Key to the palliative
care ethos in its early days was dignity of the patient. But organizations prac-
tising or promoting assisted dying have adopted dignity within their names,
for example, Dignitas (Switzerland), Dignity in Dying (United Kingdom),
and the Association for the Right to Die with Dignity (Spain). These groups
also have in common an emphasis on quality of life. For those in favour of
assisted dying, quality of life is a key element in the argument. When it is
poor and likely to deteriorate further, then the case for choice in dying must
be advanced. Nevertheless, from the palliative care side, poor quality of life
is seen as a clinical challenge to be overcome and remedied through the skills
and involvement of a multidisciplinary team.
In Belgium, the two viewpoints have been encouraged to sit side by side. Not
only is euthanasia legal in Belgium, but also at the time of its enactment, pal-
liative care services were already well developed in the country. Indeed, some
palliative care teams see euthanasia as a part of the service they offer—​t he so-​
called ‘integral’ model of palliative care. Bernheim20 found that in Belgium
the movement for legalization of euthanasia promoted the improvement of
palliative care, and the existence of sufficient palliative care was instrumental
in making the legalization of euthanasia ethically and politically acceptable.
However, this reciprocal approach may only be prevalent in one part of the
country. One study aimed to find out how Flemish palliative care nurses and
physicians think about euthanasia.21 An anonymous questionnaire was sent
to all physicians (147 total, with 70.5 per cent response) and nurses (589 total,
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216 To Comfort Always

with 70.5 per cent response) employed in palliative care teams and institu-
tions in Flanders, Belgium. Analysis of the questionnaire responses identified
three clusters: (moderate) opponents of euthanasia (23 per cent); moderate
advocates of euthanasia (35.2 per cent); and staunch advocates of euthanasia
(41.8 per cent). A majority in all clusters believed that as soon as a patient
experiences the benefits of good palliative care, most requests for euthana-
sia disappear and that all palliative care alternatives must be tried before a
euthanasia request can be considered. Since most Flemish palliative care
nurses and physicians were not absolutely against voluntary euthanasia, their
attitudes may differ from those of their palliative care colleagues elsewhere.
However, the attitudes of the Flemish palliative care nurses and physicians
are largely contextual. For a very large majority, euthanasia is an option of
last resort only.
Another study has looked at the interplay between the legalization of as-
sisted dying and euthanasia and the level of development of palliative care,
in specific countries, taking as its staring point the claim such legislation can
hold back the development of palliative care and stunt its culture.22 Seven
European countries with the highest level of palliative care development,
and which included the three ‘euthanasia-​permissive’ Benelux countries and
four ‘non-​permissive’ countries were compared, using structural service in-
dicators for 2005 and 2012 from successive editions of the European Atlas
of Palliative Care. The rate of increase in structural palliative provision was
the highest in the Netherlands and Luxembourg, while Belgium stayed on a
par with the United Kingdom, the benchmark country. The hypothesis that
legal regulation of physician-​assisted dying slows the development of pallia-
tive care was, therefore, not supported by the Benelux experience. On the con-
trary, regulation appears to have promoted the expansion of palliative care in
these jurisdictions.
In the US state of Oregon, where assisted dying has been legal since 1997,
and where the number of cases remains low at around 0.21 per cent of all
deaths per annum, claims have been made that there exists an ideal and com-
prehensive system for end-​of-​life care. Around one-​t hird of those issued with
the lethal prescription to end their own lives never use it. Moreover, in a con-
text where hospice and palliative care services are well developed, some 90 per
cent of those availing themselves of the assisted dying legislation are on hos-
pice programmes. Could this prove a model for other jurisdictions? A study
by Goy and colleagues23 found the majority of hospice nurses and social work-
ers noted positive changes in the provision of palliative care by physicians
since the introduction of the Oregon Death with Dignity Act, apart from a
level of apprehension when prescribing opioid medications.
217

Definitional issues and wider understanding 217

In the Netherlands, a rather different picture is evident. Here palliative care

developed in the context of a country that had decriminalized euthanasia and
where the majority of the population accepted such a practice. This is the re-
verse of the situation in many other countries. It meant that palliative care in
the Netherlands developed at first in isolation from the wider palliative care
community, which, paradoxically, was often intensely interested in the prac-
tice of euthanasia in Holland. It was not until 1991 that the first hospice was
established in the Netherlands. Later, in the 1990s, significant government
funds were invested in centres of excellence for the promotion of palliative
care. Meanwhile, problems with the legal framework of euthanasia were in
evidence: insecurity for physicians in following legal requirements that were
sometimes unclear; a growing sense of the right of euthanasia-​on-​demand
among the public; and a sense of normalization surrounding its practice.24
The high-​level care hospices in the Netherlands remain centres of oppos-
ition to euthanasia; elsewhere the practice is not criticized, but there is a clear
moral argument from the palliative care community that greater availability
of their services would reduce the demand for assisted death. Despite this,
and the growth of palliative care in the Netherlands, the number of cases of
euthanasia each year has been increasing.
The slippery slope argument continues to underpin some of the debates
about whether or not assisted dying should be legalized. Jose Pereira, a pro-
fessor of palliative medicine based in Canada, has argued that in all jurisdic-
tions that have legalized euthanasia or assisted dying, there has been dis-
regard for the laws and safeguards that were put in place to prevent abuse
and misuse of these practices.25 Prevention measures have included, among
others, explicit consent by the person requesting euthanasia, mandatory re-
porting of all cases, administration only by physicians (with the exception of
Switzerland), and consultation by a second physician. Pereira provides evi-
dence that these laws and safeguards are regularly ignored and transgressed
in all the jurisdictions, and that increased tolerance of these transgressions
in societies with such laws represents a social slippery slope, as do changes to
the laws and criteria that followed initial legalization. Although the original
intent was to limit euthanasia and assisted suicide to a last-​resort option for
a very small number of terminally ill people, some jurisdictions now extend
the practice to newborns, to children, and to people with dementia. A ter-
minal illness is no longer a prerequisite. In the Netherlands, euthanasia for
anyone over the age of 70 who is ‘tired of living’ is now being considered.
Legalizing euthanasia and assisted suicide, Pereira argues, places many
people at risk, affects the values of society over time, and does not provide
controls and safeguards.
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218 To Comfort Always

From the still-​small number of countries where euthanasia and assisted

dying are legal or decriminalized, it does not seem possible to find evidence
that the development of palliative care has been compromised. Nevertheless,
the two remain in an uneasy relationship. It seems that within the community
of palliative care practitioners, there remains higher resistance to legalizing
assisted dying than is found among healthcare workers in particular, and the
wider society as a whole. As the extent of legalized assisted dying increases,
this may precipitate a significant practical and moral challenge to the field.

Public health, equity, and human rights

in palliative care
The years after the turn of the millennium gave birth to the twin ideas that
palliative care is both a public health and a human rights issue. Both are
contentious. The first assumes the insertion of palliative care into the public
health system, thereby positioning it within a discourse of need, supply, and
resource allocation. The second assertion, that palliative care is a human
rights issue, may prove challenging to progress.

Public health
It was only a matter of time before end-​of-​life care would come to be seen as
a concern of public health. Across the 100-​year span from William Munk to
the recognition of a new specialty, progress was made in the classification of
the terrain of palliative medicine. Knowledge was accumulated and codified,
and practices were scrutinized for their consequences and efficacy. Estimates
were established of the value of interventions and their potential to benefit,
not just individual patients, but also whole populations of people at the end of
life. This made it possible to focus on pain relief and palliative care as matters
affecting communities and societies, in need not only of clinical knowledge
and research, but also of the tools of population science, policy, and plan-
ning. The seeds of this are quite visible in Saunders’s writings. In the twenty-​
first century, a whole cadre of other physicians began to contribute to the
development.
In 2015, at the European Association for Palliative Care’s world congress
in Copenhagen, the sociologist Professor Luc Deliens gave a plenary lecture
that underlined the need for palliative care to engage with the model of public
health. This is an often-​repeated statement—​but what is the link between pal-
liative care and public health? First, there is concern that palliative care is still
not well understood; it requires integration within healthcare systems, and it
needs measurable outcomes. This public health articulates closely with that of
the WHO and is the stuff of the World Health Assembly resolution of 2014.
219

Definitional issues and wider understanding 219

In palliative care terms, it has four components—​t he so-​called WHO foun-

dation measures: drug availability, education, policies, and (added later26) im-
plementation. Against these measures, there is still much progress to be made
in establishing palliative care provision and making it fully available at the
population level through the healthcare systems of individual countries. Over
30 years since the measures were first articulated, one wonders whether the
paradigm is right.
Second, there is a view that palliative care has a different starting place.
This begins with communities and capacity, rather than services and deficits.
It has been widely articulated by Professor Allan Kellehear, another soci-
ologist, but his notion of public health is rather different. Kellehear begins
from the perspective that for much of our lives, including at the end of them,
most of us are not face to face with healthcare professionals and services.
Rather, we encounter illness, loss, and mortality as social experiences that
are shaped primarily by culture, by geography, by beliefs, by communities
and relationships. Within this, medicine and medical care can be quite small
elements. When he calls for a public health model of palliative care, he is
therefore talking about something rather different. For Kellehear, palliative
care seldom embraces public health ideas about community engagement,
community development, and citizenship. He points us to the significance
of community and ideas about prevention, harm-​reduction, and early in-
tervention strategies to address the social epidemiology of death, dying, be-
reavement, and long-​term caregiving. This outlook has a health-​promoting
dimension, sees the main source of end-​of-​life care as families and com-
munities (not specialists and services), and argues for a societal reappraisal
of death, dying, and bereavement.27, 28 The goal in this version is to achieve a
greater measure of compassion and dignity in all aspects of dying and death,
in whichever aspect of society they are manifested, and certainly not within
the healthcare system alone.
We might take the plurality of debate around these issues as either a sign
of strength or an indication of weakness. A willingness to discuss openly the
aims, boundaries, and contours of the field is for many an indicator of in-
sight and reflexivity. For others it denotes confusion, mission creep, and an
inability to articulate to others the core message of palliative care. However,
it is curious that a palliative care that is uncertain about its boundaries and
definitions is seeking alliances with another part of health discourse—​public
health—​around which so many similar debates revolve and swirl. As Erika
Blacksher wrote in 2014: ‘There is no settled account or definition of public
health.’29 It seems important, therefore, to clarify with which ‘public health’ it
would be desirable for palliative care to align, and to what ends.
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220 To Comfort Always

Equity
The need for palliative care has been heavily defined by the disease status of
patients and their particular associated needs. Nevertheless, as the field ma-
tures, a new front of exploration opens up associated not with the diagnosis,
organs of the body, or disease severity, but with the particular places, settings,
and social groups that might benefit from palliative care. From the 1990s on,
specialist interest began to develop in palliative care for prisoners, for home-
less people, and for those identifying as lesbian, gay, bisexual, or transgender.
Palliative care availability and access were increasingly framed as matters of
equity and then of human rights.
After 2000, a number of key developments took place globally in end-​of-​life
care, including a series of important summit meetings on international pal-
liative care development and the creation of the Worldwide Palliative Care
Alliance. In the autumn of 2011, two separate declarations emphasized the
importance of palliative and end-​of-​life care. The United Nations (2011) re-
ferred to the need for palliative care provision in its statement about the care
and treatment of people with non-​communicable disease. Then, the World
Medical Association (2011) made its case for improvement in end-​of-​life care,
stating that receiving appropriate end-​of-​life medical care must not be con-
sidered a privilege but a true right, independent of age, or any other associated
factors.
The palliative care community itself has also been active in producing
exhortatory charters and declarations, usually promoted at specialist in-
ternational conferences. 30 These call on governments to develop health
policies that address the needs of patients with life-​limiting or terminal
illnesses, and to promote the integration of palliative care alongside other
health services. They promote the need for access to essential medicines,
including controlled medications, for all who require them, and they focus
on the identification and elimination of restrictive barriers that impede
access to strong opioids for legitimate medical use. These pronounce-
ments also emphasize the importance of the supply line for such drugs,
along with appropriate rules and laws governing their distribution and
prescription, by properly trained practitioners. Such calls underline the
need for appropriate initial and undergraduate education programmes for
healthcare providers to ensure that basic knowledge about palliative care
is widely disseminated and can be applied wherever the need should arise
in the healthcare system. They also highlight the need for postgraduate
and specialty palliative care programmes, so that patients with complex
problems can receive appropriate care. Key to all this—​a nd at the heart
of the public health orientation—​is the requirement that palliative care is
221

Conclusions and final reflections 221

properly integrated into wider healthcare systems with services designed

in relation to need and demand.

Human rights
Recognition of palliative care as a human right31 has been developing, and
access to palliative medication has been incorporated into a resolution of the
United Nations Commission on Human Rights;32 but the goals of such work
are difficult to define and the likelihood of reaching them is highly unpredict-
able. The claim that palliative care is a human right seems to be but partially
founded.33 The United Nations Committee on Economic, Social and Cultural
Rights has stated that it is critical to provide attention and care for chronic-
ally and terminally ill persons, sparing them avoidable pain, and enabling
them to die with dignity. Also, under article 12 of the International Covenant
on Economic, Social, and Cultural Rights, and article 7 of the International
Covenant on Civil and Political Rights, countries are obliged to take steps to
ensure that patients have access to palliative care and pain treatment.
Likewise, according to the United Nations Committee on Economic, Social,
and Cultural Rights, states are under the obligation to respect the right to
health by refraining from denying or limiting equal access for all persons to
preventive, curative, and palliative health services. Access to palliative care
is a legal obligation, as acknowledged by UN conventions, and has been ad-
vocated as a human right by international associations, based on the right to
the highest attainable standard of physical and mental health. In cases where
patients face severe pain, government failure to provide palliative care can
also constitute cruel, inhuman, or degrading treatment. However, of course,
governments of many different stripes can flout the law and ignore human
rights. There are problems with framing palliative care as a human rights
issue from a western perspective and thereby setting standards that low and
middle-​income countries will find hard to attain. Nevertheless, there have
been legitimate interests in palliative care from organizations like Human
Rights Watch, and these seem set to continue.34

Conclusions and final reflections

Palliative care developed strongly in the early decades of the twenty-​first cen-
tury and came to have a global reach, albeit with patchy coverage. As it grew
into a recognizable field of activity, discernible fissures opened up in its ap-
proach and orientation. Palliative care grew out of a hospice-​t ype response to
the needs of dying cancer patients. Its model of care fit a particular trajectory
of treatment and its associated illness experience. Within that model, it iden-
tified an ethical and moral space in which to promote the holistic care of the
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222 To Comfort Always

patient and family, and it adopted particular strategies for pain and symptom
management. Now, in many countries, it seeks to meet the complex needs of
ageing populations characterized by multiple morbidities in situations where
demand for end-​of-​life care is growing. This requires it to adopt an ethics
of public health and to champion the claim that access to palliative care is a
human right. In addition to these clinical and service level challenges, pal-
liative care has to find an appropriate orientation to contexts where assisted
dying is legalized. This may require it to modify its historic opposition to as-
sisted death. As increasing numbers of jurisdictions enshrine this in law, so
the oppositional stance of the palliative care community will become more
difficult to maintain.
In 2014, Atul Gawande’s book Being Mortal—​Illness, Medicine, and What
Matters in the End, and his accompanying British Broadcasting Company
(BBC) Reith Lectures offered a compelling analysis of what is happening
with end-​of-​life care, what palliative care has to contribute, and what needs
to change.35 A surgeon at the Brigham Young Women’s Hospital in Boston, a
health policy and public health analyst, and former advisor to President Bill
Clinton, Gawande read politics, philosophy, and economics at Oxford before
embarking on medical training in the United States. Being Mortal set out the
complexities, challenges, and dilemmas of modern medicine and brought a
clear-​eyed perspective to the innovations required to improve things—​not
just in the author’s home country, but also globally.
Gawande’s project has a history, going back almost 50 years. He reached a
large public audience in his writing about mortality, dying, and death, just
as the psychiatrist Elizabeth Kübler-​Ross did from the Billings Hospital in
Chicago, where she started working in 1965 and from where, in 1969, she pub-
lished her book On Death and Dying. Like Being Mortal, Kübler-​Ross’s book
quickly became a best seller. It was followed by other popular books on the
failings of American medicine in the face of human mortality. The surgeon
Sherwin Nuland’s How We Die: Reflections on Life’s Final Chapter (1992) was a
New York Times best seller, won the National Book Award for nonfiction, and
was shortlisted for the Pulitzer Prize. Ten years later, Canadian physician David
Kuhl’s What Dying People Want (2002) took him onto the Oprah Winfrey Show
and out to a wide audience with a work based on conversations and interviews
with dying people and their families. He followed it in 2006 with Facing Death,
Embracing Life. And, over the years, the well-​known palliative care doctor Ira
Byock has reached a large readership with works such as Dying Well (1997), The
Four Things That Matter Most (2004), and The Best Care Possible (2012). These
general readership books on end-​of-​life issues sold in quantities that most aca-
demic authors and their publishers can only dream about.
223

Conclusions and final reflections 223

Yet, it is a genre completely absent from other parts of the Anglo-​Saxon

world. Cicely Saunders wrote widely on these topics but aside from the oc-
casional newspaper article, she never found a popular audience. None of the
British palliative care doctors reached out to engage with the public in the
fashion of their North American counterparts. British medicine seemed to
have failed to produce a popular writer of serious thought concerned with the
broad perspective on ageing, mortality, and care at the end of life. Gawande
deals with these topics superbly. His book is packed with stories about pa-
tients and families, and full of memorable observations across many individ-
ual cases, in which the vital questions are frequently the same.

What is your understanding of the situation and its potential outcomes? What
are your fears and what are your hopes? What are the trade-​offs you are willing to
make and not willing to make? And what is the course of action that best serves this
understanding?34

Translated out of baby-​boomer talk and into any local vernacular, these last
four questions are pertinent, telling, and enormously consequential for indi-
vidualized care at the end of life.
At the end of 2014, Gawande delivered the annual set of Reith Lectures for
the BBC’s The Future of Medicine. The third lecture was called ‘The Problem of
Hubris’. It is an extended account of one person’s experience of hospice care in
the United States. Gawande introduces us to his daughter’s piano teacher, Peg.
We learn of Peg’s struggles with advanced illness and its treatment, her painful
decision to ‘transition to hospice’, and the benefits that flowed in the weeks that
followed. In the discussion, the story of Peg was contextualized in what we know
about the reach of hospice in America, but also the limits of its funding model, the
tensions between the hospice approach and the wider concept of palliative care,
and the thorny topic of assisted dying. Atul Gawande was only now echoing the
thesis set out by Ivan Illich almost 40 years earlier: that we have lost the capacity
to accept death and suffering as meaningful aspects of life; that there is a sense of
being in a state of ‘total war’ against death at all stages of the life cycle; that there
has been a crippling of personal and family care, and a devaluing of traditional
rituals surrounding dying and death; and that a form of social control exists in
which a rejection of ‘patienthood’ by dying or bereaved people is labelled as devi-
ance. Gawande revisits all of this and puts it firmly in a twenty-​first century con-
text of ageing and the struggle to provide dignified care at the end of life.
The present book has shown how the orientation of medicine to those with
life threatening illness, particularly those close to death, has been changing
since the late nineteenth century. In that time, a special field of medical prac-
tice has emerged that not only defines a key area of care, but must also advocate
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224 To Comfort Always

for it and gain recognition within the broader discourse of medical thinking
and practice. In this context, it seems appropriate to give the final word to
a physician. Not one who was a member of the first generation of palliative
medicine pioneers, nor one who was exposed early to their work. Rather, Dr
Eduardo Bruera (Figure 7.1), a doctor who came to the world of palliative care
from the poor and public hospitals of Latin America, who saw the need for
medicine to change, and then dedicated his career to the new specialty, work-
ing within the medical rule book to gain recognition for it. Over a long career36
he gained a global reputation, not only for his clinical practice, research, and
extensive portfolio of publications, but also for his role in mentoring and train-
ing hundreds of doctors, his leadership, and his ability to engage with inter-​
governmental organizations and all those concerned to promote palliative care
across all the countries of the world. Interviewed in 1995, he sets out the scope
of his ambition, but also neatly anticipates the challenges facing anyone—​such
as the present author—​who would attempt to even sketch the history of this
remarkable, and still emergent medical specialty.

There’s no doubt that palliative care came out of the fringe. But it is also clear to me
that I don’t want to work on the fringe. I believe in academics, I believe in treating pa-
tients, I think there are many good things that are related to the practice of medicine.
I am not prepared to accept that, because some physicians practice what is, I think,
bad medicine, they’re more physicians than I am. If anything, my role is to elbow out
of the profession the uncaring, brutal individuals, but not to let them edge me into the
fringe and continue doing my little thing. So I always thought that the battle front, in
the case of palliative care and what I was doing, is to make it absolutely sure that no
cardiovascular surgeon looks down to us; that we are a major component of what the
practice of medicine is. William Osler used to publish an awful lot on palliative care
and palliation, and so the great figures of medicine paid a lot of attention to support,
to counselling, to psychosocial issues, and to symptom relief. Somewhere, thirty or
forty years ago, we lost … the direction, but I see our task as gaining again the direc-
tion, so that we teach the new generation the right values. So I think we have to push
within the system, not to become ‘fringed’. But again, that’s one view, I mean I’m sure
there are a hundred different views, and you’ll have to put them together …!37

Notes
1. Worcester A (1935). The Care of the Aged, the Dying, and the Dead. Springfield,
IL: Thomas.
2. Clark D, Clark J, Greenwood A (2010). The place of supportive, palliative, and end
of life care research in the United Kingdom Research Assessment Exercise, 2001 and
2008. Palliative Medicine, 24(5):533–​43. doi:10.1177/​0269216309359995.
3. Pastrana T, Jünger S, Ostgathe C, Eisner F, Radbrunch L (2008). A matter of
definition—​key elements identified in a discourse analysis of definitions of palliative
care. Palliative Medicine, 22:222–​32.
225

Conclusions and final reflections 225

4. National Institutes of Health (2004). National Institutes of Health State-​of-​t he-​

Science Conference: Statement on Improving End-​of-​Life Care, 6–​8 December 2004.
Available at http://​consensus.nih.gov/​2004/​2004EndOfLifeCareSOS024html.htm,
accessed 27 July 2015.
5. Cohen J, Deliens L (2012). A Public Health Perspective on End of Life Care. Oxford,
UK: Oxford University Press.
6. Hospitals increasingly offer palliative care (2011). Washington Post (28 March).
7. Center to Advance Palliative Care (2008). Analysis of U.S. hospital palliative care
programs: 2010 snapshot. [Data reported were for 2008.] Available at https://​w ww.
capc.org/​media/​fi ler_​public/​83/​6 4/​836419d1-​8b4d-​474c-​aa93- ​602c5d5fef01/​
analysis-​of-​us-​hospital-​palliative-​care-​programs-​2010-​snapshot.pdf, accessed 27
July 2015.
8. PR Newswire (2011). New poll: Americans choose quality over quantity at the end
of life, crave deeper public discussion of care options. National Journal (8 March).
Available at http://​w ww.prnewswire.com/​news-​releases/​new-​poll-​a mericans-​choose-​
quality-​over-​quantity-​at-​t he-​end-​of-​life-​crave-​deeper-​public-​discussion-​of-​care-​
options-​117575453.html, accessed 12 October 2012.
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in Northern Ireland. BMC Palliative Care, 12 (17 September):34. doi:10.1186/​
1472-​684X-​12-​34.
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Care. Available at https://​media.capc.org/​fi ler_​public/​18/​ab/​18ab708c-​f835-​4380-​
921d-​fbf729702e36/​2011-​public-​opinion-​research-​on-​palliative-​care.pdf, accessed 27
July 2015.
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site. Available at http://​getpalliativecare.org/​palliative-​care-​bridge/​, accessed 10
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13. Ibid. See note 11.
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Journal of Palliative Medicine, 1:315–​328.
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pharmacological sedation for terminally ill adults. Cochrane Database of Systematic
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16. McLean S (2007). Assisted Dying: Reflections on the Need for Law Reform. Abingdon,
UK: Routledge-​Cavendish.
17. Materstvedt LJ et al. (2003). Euthanasia and physician-​assisted suicide: A view from
an EAPC Ethics Task Force. Palliative Medicine, 17:97–​101.
18. Council of Europe Resolution (2012). ‘Protecting human rights and dignity by taking
into account previously expressed wishes of patients’ Resolution (n°1859/​2012).
19. Sleeman K (2013). The Liverpool Care Pathway: A cautionary tale. British Medical
Journal, 347:f4779.
20. Bernheim JL (2008). Development of palliative care and legalisation of euthana-
sia: Antagonism or synergy? British Medical Journal, 336(7649):864–​7.
21. Broeckaert B, Gielen J, van Iersel T, van den Branden S (2010). Euthanasia and pal-
liative care in Belgium: The attitudes of Flemish palliative care nurses and physicians
towards euthanasia. AJOB Primary Research, 1(3):31–​4 4.
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22. Chambaere K, Bernheim JL (2015). Does legal physician-​assisted dying impede de-
velopment of palliative care? The Belgian and Benelux experience. Journal of Medical
Ethics. doi:10.1136/​medethics-​2014-​102116.
23. Goy ER, Jackson A, Harvath T, Miller LL, Delorit MA, Ganzini L (2003). Oregon
hospice nurses and social workers’ assessment of physician progress in palliative care
over the past 5 years. Palliative and Supportive Care, 1(3):215–​219.
24. Gordijn B, Janssens R (2004). Euthanasia and palliative care in the Netherlands: An
analysis of the latest developments. Health Care Analysis, 12(3):195–​207.
25. Pereira J (2011). Legalizing euthanasia or assisted suicide: The illusion of safeguards
and controls. Current Oncology, 18(2):e38–​45.
26. Stjernswärd J, Foley KM, Ferris FD (2007). Integrating palliative care into national
policies. Journal of Pain and Symptom Management, 33(5):514–​520.
27. Kellehear A (2005). Compassionate Cities: Public Health and End-​of-​Life Care.
London, UK: Routledge.
28. Kellehear A (2003). Public health challenges in the care of the dying.
In: Liamputtong P, Gardner H (eds.). Health, Social Change & Communities, pp. 88–​
99. Melbourne, Australia: Oxford University Press.
29. Blacksher E (2014). Public health ethics. Ethics in Medicine website. University of
Washington School of Medicine. Available at https://​depts.washington.edu/​bioethx/​
topics/​public.html, accessed 10 June 2015.
30. Palliative care ‘declarations’: Developing a case study (2015). End of Life Studies web-
site. University of Glasgow. 22 May. Available at http://​endoflifestudies.academicblogs.
co.uk/​developing-​a-​case-​study-​on-​palliative-​care-​declarations/​, accessed 10
June 2015.
31. Harding R (2006). Palliative care: A basic human right. id21 Insights Health (8
Feb):1–​2. Available at http://​w ww.eldis.org/​id21ext/​InsightsHealth8Editorial.html,
accessed 27 July 2015.
32. Commission on Human Rights Resolution 2004/​26: Item 7c calls on states ‘to pro-
mote effective access to such preventive, curative, or palliative pharmaceutical prod-
ucts or medical technologies’. United Nations Human Rights website. Available at
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33. Open Society Foundations (2011). Palliative care as a human right: A fact sheet.
Available at http://​w ww.opensocietyfoundations.org/​publications/​palliative-​care-​
human-​right-​fact-​sheet, accessed 5 February 2015.
34. https://​w ww.hrw.org/​topic/​health/​palliative care, accessed 27 July 2015.
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London, UK: Profile Books in association with the Wellcome Collection.
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11(4): 565–​9.
37. Hospice History Project: David Clark interview with Eduardo Bruera, 9
November 1995.
227

Index

Abel, Emily 9, 35 assisted suicide legalization 214

Abiven, Maurice 167 Association de Dames du Calvaire, L’ 37
Academy of Hospice Physicians 165 Association for Palliative Medicine
accreditation 154–​6, 186–​7 for Great Britain and
Accreditation Council of Graduate Medical Ireland 111, 151–​3
Evaluation (ACGME) 186–​7 Association for the Right to Die with Dignity
active approach to care 78 (Spain) 215
activism, global 175–​7 Atlee, Clement 60
Africa 174–​5, 178 atmosphere, homely 53
African Palliative Care Association Australia 37, 183–​5, 214
(APCA) 174–​5 Bailey, Margaret 74
ageing populations 181, 213, 222 Baines, Mary 95
see also geriatrics and dying elderly Banderanaike, S.W.R.D. 94
Aikenhead, Mary (later Sister Mary Barber, Hugh 79
Augustine) 37, 39 Barrett, Howard 41–​2 , 44–​7, 50, 52, 88,
alcohol 199–​200
discontinuance of mixtures ‘beautiful death’ 3
containing 106, 135 bedclothes, light 16
forbidden 51 bedside teaching 19
use for pain relief 7, 16, 129 Beecher, Henry 102
see also Brompton Cocktail Belgium 214, 215–​16
Aldrich, Knight 100 Bell, Florence 6
Allen, Mildred 94 Bending, Lucy 21
Allport, Gordon 97, 98, 99 benzodiazepines 210
American Academy of Hospice and Palliative Berkeley, John 67–​8
Medicine (formerly Academy of Bevan, Aneurin 60, 79
Hospice Physicians) 185 Beveridge, William 79
American Board of Hospice and Palliative Birmingham Philosophical Society 26
Medicine (ABHPM) 186 Blacksher, Erika 219
American Board of Internal Medicine 185 Bodkin Adams, John 80
American Board of Medical Specialities body-​mind dualism 78
(ABMS) 186–​7 body and soul, caring for 89
American Cancer Society 94 Bohusz-​Szyszko, Marian 110
American College of Physicians 185 Bonica, John 70, 121–​2 , 123, 129, 134, 159
American Medical Association Boulay, Shirley du 90
(AMA) 9–​10 Bowlby, John 74
analgesia 8, 70, 72 British Medical Association 68
by the clock/​on regular basis 87, 89, 122 Brodie, Sir Benjamin 15, 18
antiemetics 129 Brompton Cocktail 24, 69, 125–​31
antihistamines -​promethazine 126 abandonment of 117
anxiety about dying process 2, 52, 74 Brompton Hospital 74, 125
Argentina 171 Broome, Isobel 35, 40, 47, 50, 51, 53
Ariès, Phillipe 2–​3 Browne, Oswald 11, 14
Armstrong, David 81 Brown, Esther Lucille 98, 99
Asia 171–​4, 178 Bruera, Eduardo 170–​1, 197, 224
Asia Pacific Hospice Palliative Care Buck, Joy 98
Network 172 Bunyan, John 138
aspirin 53 Burch, Rosetta 92
assisted dying 22, 26, 213–​18, 223 Burn, Gilly 172–​3
legalization 214, 216, 217, 222 Byock, Ira 222
228

228 Index

Callaway, Mary 168–​9 Cicely Saunders Institute 205

Calman-​Hine Report (Expert Advisory circulatory system diseases 64
Group on Cancer) 141–​2 , 157 Clark Wilson, John 51
Calouste Gulbenkian Foundation 62 clinical judgement 199
Calvary Hospice of Kangung (Korea) 171 clinical realm, defining 117–​43, 208–​9
Campbell, Lorna Jane 10, 20, 22, 27 cancer pain, problem of 121–​4
Canada 128, 129, 170, 187 conditions of possibility 142–​3
cancer 2, 14, 16, 21, 22, 61, 74, 201, new model of care, researching 125–​31
206, 211 Twycross, Robert and Brompton
advanced 23–​4, 52, 65, 212 Cocktail 126–​31
clinical culture 49, 50 palliative medicine 118–​21
deaths 64 research and service
external cancers 49–​50 development 138– ​4 2
fungating and eroding growths 88 planning and change 139–​42
growing visibility of 55 total pain (physical symptoms, mental
hospitals 34 distress, social problems and
Marie Curie Memorial and The Queen’s emotional difficulties) 131–​8
Institute of District Nursing joint syringe driver 135–​8
committee 59, 62 cocaine 24
morphine 69–​70 discontinuance of routine use of 106,
new evidence 72, 73 129, 135
nursing at home 62–​3 see also Brompton Cocktail
pain Cochrane Review (2015) 210
at population level 159 codeine phosphate 53
problem of 121–​4 Colebrook, Leonard 72–​3
as public health issue 124 Colombia 214
see also World Health Organization comfort of patient 13, 20, 52, 160, 207,
(WHO) analgesic pain ladder 208, 215
Cancer Relief India 172–​3 communications channels, good 53
Cancer Relief Macmillan Fund 152, 154 community, sense of 90–​1, 105, 107, 112, 219
Cane, Walter 12, 13 compassion 219
Cannadine, David 28 confusion of patient 129, 219
carers 7–​8 consumption see phthisis (pulmonary
see also family tuberculosis)
Carleton-​Smith, Michael 141 continuity of care 96, 139
Cassell, Eric 169 Council of Europe 214
Catholicism 46 creeping medicalization 188
Catholic Sisters of the Little Company of Crowther, Tony 120
Mary (Korea) 171 cultural aspects of death 4
Centeno, Carlos 182–​3 cure and care systems 108
Center to Advance Palliative Care 207
certification and accreditations of Dale, William 23
physician training in palliative Dames du Calvaire, Les 37–​8
medicine 154–​6, 186–​7 Davidson, Frances 33, 38, 39, 40, 48, 49, 50
Ceylon Cancer Society 94 daycare services 141, 151
change and continuity 77–​81 death at home 64–​5
Chardin, Teilard de 138 Deliens, Luc 218
charitable endeavour 36, 79, 81, 87 delirium 211
China 172, 180 dementia patients 212, 213
chloroform 19, 129 demographic change and consequences for
see also Brompton Cocktail dying and death 2
cholera 15, 38 denominational underpinnings of
Christianity 7–​8 hospices 44, 54
chronic illness and long-​term effects of see also religion/​religious entries
disabling conditions 2, 7, 9, 66, 72 depression 74
see also morbidities, multiple Desrosne, Charles Louis 21
Church of England Board for Social diagnosis and prognosis, discussion of with
Responsibility working party 105 patient and relatives 74, 88, 101
229

Index 229

diamorphine see morphine and European Association for Palliative Care

diamorphine (EAPC) 165–​8, 175, 218
Dickson, Robert 137 European Court of Human Rights 214
diet see nourishment/​nutrition, appropriate European Federation of Older Persons 168
Dignitas (Switzerland) 215 European Society for Medical
dignity of dying 7, 78, 89, 119, 207, 208, 215, Oncology 168
219, 221 euthanasia 13–​15, 17, 26, 61, 70–​1, 77, 133,
Dignity in Dying 215 199, 208
disease processes 53 Belgium: opponents and advocates 216
distress, incidence, severity and relief of 75 ethical debate 105, 208–​9
district health authorities 141 legalization or decriminalization 61, 210,
doctors 10–​11 214, 216, 217, 218
Dominican Sisters of Hawthorne 39 opposition 208–​9
double effect 209–​10 voluntary 26, 71, 213
Doyle, Derek 149, 151–​3, 154–​5, 158, evangelical movement 5–​6
165, 166 evidence-​based model of practice 188
dressings, clean 51 existential matters 211
drowsiness of patient 129 Exton-​Smith, Arthur Norman 71–​2 ,
drugs 11 73, 76–​7
analgesia 8, 70, 72, 87, 89, 122
antiemetics 129 family 219
antihistamines 126 as carers 65–​6, 96, 212
aspirin 53 focus on 104, 208
availability 160 grieving 4–​10
benzodiazepines 210 involvement 112
Brompton Cocktail 24, 69, 117, 125–​31 psychosocial needs 160
chloroform 19, 129 as unit of care 160, 212
cocaine 24, 106, 129, 135 values, changes in 65
codeine phosphate 53 fear of dying 88
hypnotics 52 Feifel, Herman 97–​8
laudanum 10, 21 Finland 179
lytic cocktails 126 First International Congress on the Care of
nerve blocks 53, 121 the Terminally Ill (1976) 163–​4
phenobarbitone 52 Floriani family and Floriani
phenothiazine 126 Foundation 122, 123, 166
regimes, matching of to symptoms 53 fluids, importance of 52, 54
restriction 22 Foley, Kathleen 70, 122–​4
sedation therapy 210–​11 Ford, Gillian 95, 152–​3
see also alcohol; opiates frailty 213
Dudley Road Group of Hospitals 86 France 5, 126
Durkheim, Emile 150 Frankl, Viktor 99, 138
dyspnoea 211 Friedenheim 33, 38, 40–​1, 47
clinical culture 49, 50, 51, 52
Earnshaw-​Smith, Elisabeth 166 ‘from cradle to grave’ 60–​2
Eastern and Central Europe 167,
168–​70, 178 Gallwey, Father Peter 42
Eastern and Central European Palliative Garnett, Henry 141
Task Force 168–​9 Garnier, Jeanne 37–​8, 39
Eisenchlas, Jose 171 gate-​control theory of pain 128
Ella Lyman Cabot Trust 99 Gawande, Atul 222, 223
emerging medical perspectives on care of the Gaynor, Anna (Mother Mary John) 37
dying 10–​20 Genéviève, Sister 91
emotional planning 140 geriatrics and dying elderly 19, 28, 54, 61,
equipment provision at home 63 62, 73, 206
equity 220–​1 Germany 8
eternal damnation beliefs 21 Get Palliative Care 207
ethics 160, 208–​9 Giddens, Anthony 79
Europe 2, 4, 10, 28, 35, 165–​8 Glaser, Barney 81
230

230 Index

Gleeson, Sister Mary Paula 43 services 63, 112, 151

Global Atlas of Palliative Care 182 see also family as carers
global networks and organizations 159–​77 Home of the Compassion of Jesus 39
activism 175–​7 home deaths 64, 65
Africa 174–​5 Home of our Lady of Good Counsel,
Asia: Korea, Japan and China 171–​4 Minnesota 94
Eastern Europe 168–​70 homes for the terminally ill
Europe 165–​8 (1885–​1948) 33–​55
India 172–​3 clinical culture 48–​53
international studies 177–​80 hospitals, medical progress and
Latin America 170–​1 implications for the dying 34–​5
Malaysia 173–​4 institutions taking precedence 34
North America 164–​5 possibilities of wider influence 53–​5
prospects for global improvement 180–​2 religious foundations 35–​53
World Health Organization ‘holy and happy deaths’ 46
(WHO) 159–​63 London -​terminal care
Global Quality of Death Index 179–​80 homes 38– ​4 4
glorious death 15, 28 ‘respectable Christian death’ 46–​7
Glyn Hughes, H.L. 62, 63–​6, 71–​2 , 73, 77, spiritual passivity and ecumenical
90, 140 leanings 47–​8
Goh, Cynthia 174 women, role of 35–​9
Goldin, Grace 44 Horder, Lord 66, 71
good death 5–​6, 14, 20, 26, 36–​7, 208 hospice movement 18, 79, 87, 90, 109–​10,
Gorer, Geoffrey 81 111, 122, 202
Gould, Sir Alfred Pearce 51 Hospice of Northern Virginia 165
governmental policy 160 Hospis Malaysia 174
government funding 156 Hospital of St John and St Elizabeth 39
Graeme, P. 87 hospitals, medical progress and implications
Grant, Ian 68 for the dying 34–​5
Graseby syringe driver and continuous hospital units and support teams 139–​40,
subcutaneous infusion (CSCI) 135 141, 151
grief 4–​10 Hostel of God, London (later Trinity
anticipatory 74, 99 Hospice) 41, 45, 49
growth of hospice care 150–​1 Houde, Ray 70, 102, 122
Grubb, Sir Kenneth 90 Hoyle, Clifford 68, 75
Gunaratnum, Yasmin 109 Huber, Alice (Mother Alphonsa) 39
Hufeland, Christoph Wilhelm 22
Halford, Sir Henry 15, 22 human rights 220, 221, 222
Hamzah, Ednin 173–​4 Human Rights Watch 221
Hanks, Geoffrey 130, 157–​8, 167 Humphreys, Clare 39–​40, 46, 54
Hawthorne, Rose 38–​9 Hungary 170
Healy, T.M. 37 hydrophobia 15
heart disease 15, 212 hypnotics 52
Helm, D.P. 7–​8, 26 hypodermic syringe 10, 21
Help the Hospices 111, 142
Henderson, Virginia 98 Illich, Ivan 223
Higginson, Irene 205 Incurable Patients Bill 105
Hillier, Richard 151–​2 , 154, 166 India 172–​3, 178, 180
Hill of Tarvit 63 insomnia 52
Hinohara, Shigeaki 19 Institute of Medicine (IoM) report
Hinton, John 75–​7, 80, 138 (1997) 186
HIV/​A IDS 111, 175, 181, 212 Institute of Medicine (United
Hoare, William 41 States) 185
Hodgson, Barbara 21 integral model of palliative care 215
holistic principles 203 intellect, state of at moment of
‘holy and happy deaths’ 46 death 15
home care interest and disinterest in the mid-​t wentieth
and physical conditions, dealing with 63 century 59–​81
231

Index 231

clinical discussions 66–​77 Lack, Sylvia 131, 173

change and continuity 77–​81 laminectomy 53
medicine and euthanasia 70–​1 Lancet, The 17
new evidence 71–​7 Last Acts initiative 186
‘from cradle to grave’ 60–​2 Lathrop, George 38
social conditions for the dying in 1950s Latin America 170–​1
Britain 62–​6 Latin American Association of Palliative
cancer patients nursed at home 62–​3 Care 171
‘peace at the last’ 63–​5 laudanum 10, 21
welfare state and National Health Service Lawrence, D.H. 138
(NHS) 60 Leak, W. Norman 66–​7, 69
International Association of Hospice Leshan, Lawrence 102
and Palliative Care light and ventilation, importance of 54
(IAHPC) 165, 175 Liverpool Care Pathway (LCP) 209,
International Association for the Study of 214–​15
Pain (IASP) 122 London -​terminal care homes 38–​4 4
International Covenant on Civil and Political Friedenheim 40–​1
Rights 221 Hostel of God 41
International Covenant on Economic, Social proto-​hospices 44
and Cultural Rights 221 St Joseph’s Hospice 42–​4
International Hospice Institute St Luke’s Home for the Dying Poor 41–​2
(IHI) 165 Lunt, Evered 90
International Observatory on End of Life Lush, Percy 50, 51
Care (IOELC) 178 Luxembourg 214, 216
international studies 177–​80 Luzack, Jacek 169
early projects 177–​8 lytic cocktails 126
global comparison of palliative care Lytton, Bernard 98
development 178–​9
Global Quality of Death Index 179–​80 Macdonald, Arthur 18
intrathecal injections 53 Macdonald, Neil 158, 162
Ireland 49, 206 McGill Pain Questionnaire 129
Irish Medical Council 156 Macmillan, Douglas 140
Irish Sisters of Charity 37, 86 Macmillan-​f unded nurses and
Italy 178 doctors 140–​2
Maddocks, Ian 183–​5
Jackson, Avril 178 Maeterlinck, Maurice 25
Jacobs, Joseph 24–​5, 28 Magno, Josefina 164–​5
Jalland, Pat 4–​5, 6, 7, 17, 18, 26, 27, 35 Mahar, Caitlin 80
Japan 171 Malaysia 173–​4
Johns Hopkins University School of management cultures 108
Medicine 19 Maria, Clara 41
Joint Cancer Survey Committee 64 Marie Curie Memorial Foundation 63,
Joint Committee on Higher Medical 141, 142
Training (JCHMT) 153 nurses 141
residential cancer care homes 63, 74, 86
Kaasa, Stein 182–​3 and The Queen’s Institute of District
Kaiserwerth sisters (Germany) 8–​9 Nursing joint committee 59,
Kalish, Richard 102 62, 65–​6
Kastenbaum, Robert 102 Marx, C.F.H. 1, 12–​13, 27
Kearney, Michael 188 Mary Antonia, Sister 43
Kellehear, Allan 219 May, Howard 45
Kemp, Nick 17, 26 meaning in dying 78, 119
Korea 171, 179 medical associations 151
Kübler-​Ross, Elisabeth 100, 107, medicalization 188, 211
163, 222 Medical Mission Hospital 38
Kuhl, David 222 medical officers 51
Kumar, Ashok 172–​3 medical specialization 79–​80
Kumar, Suresh 172–​3 see also speciality recognition
232

232 Index

medical training programme 154–​6 narcotics 13, 72, 127

Medicare and hospice care support 85, 165 see also cocaine; morphine and
Meier, Diane 207 diamorphine; opiates
Meldrum, Marcia 122, 124 National Assistance Board 63
Melzack, Ronald 128, 135 National Cancer Institute 122, 186
mental distress of dying 15, 53, 63, 75, 76, 78, National Council for Hospice and Specialist
88, 160–​1, 212 Palliative Care Services 142
mercy-​k illing see assisted dying; euthanasia National Council of Social Service 64
Methodism 46 National Health Service (NHS) 40, 60, 65–​6,
Michniewicz, Antoni 91, 92–​3 74, 77–​8, 81, 86, 153
midazolam (benzodiazepine) 210 change and continuity 79–​80
Middle East 178 funding for St Christopher’s 104
Mildmay Mission Hospital 38 planning and change 141
Millard, C.K. 71 National Health Service (NHS) Act 63
Millard, Maurice 76–​7 National Hospice and Palliative Care
Minister for Health and Children 156 Association (formerly National
Ministry of Health 43, 169 Hospice Association) (United
mission creep 219 States) 185
moment of death and urgent symptoms of National Institutes of Health State-​of-​t he-​
disease, distinctions between 15 Science Conference 186, 205
moral character 47 nausea 129
moral concerns 44, 54–​5, 199 Nayer, Dorothy 101
moral issues and euthanasia 208, 215 neglect of patients 65
morbidities, multiple 181, 212–​13, 222 nerve blocks 53, 121
Morell, Edith Alice 80 Netherlands 214, 216, 217
morphine and diamorphine 67, 68–​9, 121, new evidence 71–​7
126, 201, 208 new model of care, researching 125–​31
controlled trial 128 New Zealand 185
dosage and titration 70 Nightingale, Florence 12, 16
Friedenheim, use at 51 night nursing 63
by injection 53 nineteenth century doctors and care of the
modified-​release formulations 157 dying 1–​28
nineteenth century use of 7, 8, 10, 21, 24, 27 changing social world of dying and
parenteral versus oral administration 122 death 2–​4
potency ratio 128 demographic change and consequences
relative efficacy 127 for dying and death 2
St Christopher’s 106, 129 emerging medical perspectives on care of
Saunders, Cicely, view on 89 the dying 10–​20
syringe driver 136, 137 foresight 13
total pain 133–​4, 135 higher comfort 13
trials 128–​9 narcotics use 13
Twycross, Robert, views on 117, 153 suffering, avoidance of 13
Worcester, A.: views on 54 euthanasia 1
World Health Organization (WHO) pain relief 20–​4
analgesic pain ladder 159 representations of dying patient and
see also Brompton Cocktail grieving family 4–​10
Morris, J. Cameron 87 Noble, Hugh 12, 22–​3, 27
mortality rates 2, 28, 49 Noble, William 13
motor neurone disease 111, 212 Nolte, Karen 8–​9
Mount, Balfour 107–​8, 112, 128, 163–​4, 187, 202 nondirect care organizations 142
mourning, ostentatious, decline of 28 North America 2, 4, 10, 19, 21, 158,
multidisciplinary approach 105, 112, 140, 164–​5
142, 154, 166, 203, 211 see also Canada; United States
multiple sclerosis 212 Northern Ireland 206
Munk, William 14–​18, 20, 22–​3, 27, 51, 54, Norway 182–​3
198–​200, 208 Norwegian Medical Association 182
WHO booklet 161 Notre Dame de la Pitié Hospital
Mwangi-​Powell, Faith 174–​5 (France) 37
233

Index 233

nourishment/​nutrition, clinical nurse specialists in hospitals 140

appropriate 16, 52, 53 and close but complex relationship with
Nuland, Sherwin 222 hospice care 204
nursing homes 64–​5 definitions 205
nursing the soul 8–​9 development: global comparison 178–​9
units 107–​8
observation, systematic 78 see also palliative medicine
O’Flynn, Sister Francis Rose 55 palliative medicine 118–​21, 149–​63, 182–​7,
Open Society Institute 168, 186 197–​224
opiates 10, 16, 21–​4, 53, 54, 70, 121, 216 acceptance and spread 150
addiction/​dependence/​tolerance 24, 121, anomalies, variations and
122, 134 discontents 187–​9
availability in Africa 175 current issues 203–​5
double effect 210 definitional issues and wider
new model of care 125 understanding 205–​21
total pain 133–​4 assisted dying and palliative
wariness of clinicians towards 124 care 213–​18
World Health Organization (WHO) changing trajectories 211–​13
analgesic pain ladder 162 clinical realm 208–​9
see also Brompton Cocktail double effect 209–​10
oral hygiene 53 refractory symptoms 210
Osler, William 17–​20, 25, 54, 75 sedation therapy 210–​11
Our Lady’s Hospice, Dublin 37, 42, 44, development 198–​203
49–​50, 55, 156 equity 220–​1
oxygen administration 51 historical record 198
hospice growth and specialization 150–​1
Paddington Community Hospital 42 human rights 221
Paddington Group Management public health 218–​19
Committee 40 United Kingdom and Ireland
pain 88, 118 -​ specialization 151–​9
abnormal 70 Palliative Medicine journal 155
acute 133 Parkes, Colin Murray 74, 80, 100–​1, 105,
and advanced disease 203 106, 138–​9, 153–​4
breakthrough 137 paternalism 79, 81, 86
chronic 133 patient-​centred technology for analgesics
gate-​control theory of 128 testing 70
McGill Pain Questionnaire 129 Paula, Sister 87
preoccupation with matters of 6 peaceful death 14, 63–​5, 206
research 96 Pennefeather, William 38
severe 221 Pepper, Almon 97
specificity theory of 69 Pereira, Jose 217
specific pain syndromes 212 personality of doctor 79
unrelieved 106, 138 personhood in family context 104–​5
see also pain relief; total pain concept; phenobarbitone 52
World Health Organization (WHO) phenothiazine -​prochlorperazine or
analgesic pain ladder chlorpromazine 126
Pain and Palliative Care Society, philanthropic concerns 34, 44, 54–​5
India 172–​3 phthisis (pulmonary tuberculosis) 16, 42, 49
pain relief 52–​3, 80, 89, 123, 201, 206–​9 physical distress 6, 75, 76, 188
Christian disapproval of 8 and mental distress, interdependency
nineteenth century 20–​4 of 72, 78, 131
public health 218 physician-​assisted death 26, 216
Saunders, Cicely 105 physician-​assisted suicide 17, 210, 213
Twycross, Robert 117 Poland 169–​70, 178, 179
see also drugs; syringe driver policy innovations 157
palliative care 107, 202–​3, 206–​7, policy issues 63, 168
208–​9, 218 Poor Laws 47
associations 175 posture, importance of for dying patient 16
234

234 Index

Powley, J. 94 rituals and practices 5

process of dying 25, 54 Rivett, Geoffrey 79
professionalism and scale 40 Robert Wood Johnson Foundation 186
Project on Death in America 186 Rogers, Ada 70
proto-​hospices 44, 49 Rohlfs, Heinrich 13
protracted dying from chronic diseases 2, 7, Roll of the Royal College of Physicians of
9, 66, 72 London 14
psychological and mental distress 78, 88, Romania 170
118, 203, 212 Royal Australasian College of Physicians
Distress in Dying (BMJ) 76 (RACP) 185
Hinton John on 75 Royal College of Physicians 154
home deaths 63 Royal Marsden Hospital 74
World Health Organization Rugg, Julie 10
(WHO) 160–​1 Russell, Patrick 135–​7
psychosocial issues 74, 139, 160 Russia 170, 178
public engagement 204 Rustomjee, K.J. 93–​4
public health issue, palliative care
as 188, 218–​19 St Charles Hospital 42
public mourning and bereavement 28 St Christopher’s Hospice 61, 120, 153
antiemetics 129
quality of life before death 160, 215 cancer pain 122
chloroform water 129
radioimmunoassay 134 cocaine, abandonment of routine
Rajagopal, M.R. 172–​3 use of 129
Rane, Anders 124 interacting with St Joseph’s Hospice 44
rapid decline trajectory 212 Magno, Josefina, visit by 164–​5
Raven, Ronald 59, 62, 73, 94 morphine 129
Read, Betty 90 new model of care 125
Reece, Richard 11 research and service development 138
refractory symptoms 210 specialist clinical care, education and
Regnard, Claud 130 research 150–​1
religion/​religious 5, 54, 199, 211 total pain 133–​4, 135
care and solicitude 79, 89, 142, 208 see also Saunders, Cicely
Catholicism 46 St Columba’s Hospice, Edinburgh 149, 152
character of hospices 36, 89, 91–​2 St James’s Servants of the Poor 41
Christianity 7–​8 St Joseph’s Hospice, London 37, 42–​4, 120
concerns 44, 54–​5 clinical culture 49, 50–​1
evangelical movement 5–​6 ‘holy and happy deaths’ 46
grounds for opposing assisted Our Lady’s Wing 87
dying 208, 215 religious influences 45
Methodism 46 spiritual passivity and ecumenical
movements and religious leanings 48
development 90 see also Saunders, Cicely
orders of nuns or religiously inspired St Luke’s Home for the Dying Poor, London
women 34, 199, 200, 201 (later Hereford Lodge) 41–​2 ,
orientation and medical practice 54, 90 44–​5, 87
peace 101 clinical culture 49, 50, 52
philanthropists 34 pain relief 88
Religious Sisters of Charity 42 religious influences 45
renal disease 75 respectable Christian death 46–​7
research centres 205 spiritual passivity and ecumenical
research and service development 138–​42 leanings 48
resentment about dying 88 St Luke’s Hospice, Sheffield 74
‘respectable Christian death’ 46–​7 St Margaret’s (Clydebank, Scotland) 86
respect accorded to patient 7 St Mary’s Hospital Medical School 87, 88
restlessness (as symptom) 54 St Mary’s Teaching Group of Hospitals 42
Rey, Rosaleyne 20, 21 St Peter’s Home, Kilburn 39
ritual mediations 46 St Rose’s Home for Incurables 39
235

Index 235

St Thomas’s Hospital 139 lectures 101

St Vincent’s University Hospital, letter to British Medical Journal 76
Dublin 37, 156 management cultures 108
Salamagne, Michèle 167 media attention 101
Saunby, Robert 14 modern hospice care 89
Saunders, Cicely 54, 61, 71, 85–​113, 201 morphine and diamorphine, views
Aim and Basis 93 on 89, 106
alcohol and cocaine, discontinuance of motivations 87–​9
mixtures containing 106 multidisciplinary team of carers 105, 112
analgesics: regular dosages 89 National Health Care (NHS) funding for
anticipatory grief 99 St Christopher’s 104
Association for Palliative Medicine for nature of pain 128
Great Britain and Ireland 151–​3 network of collaborators 112
body and soul, caring for 89 new evidence 73–​4
Bohusz-​Szyszko, Marian, new model of care 125
marriage to 110 non-​malignant conditions, inclusion of
Bohusz-​Szyszko, Marian, patron to 110 patients with 111
and Bonica, John 70 North America, visits to 112
and Brompton Cocktail 126, 130 other hospices modelled on St
budgets 95 Christopher’s 104
cancer pain 122 pain-​relieving drugs 89, 105
chairperson of St Christopher’s 133 pain research 96
change and continuity 79, 80 palliative care unit 107–​8
changes in wider context 86 personal ideas and beliefs about
Christian religion 113 religion 109
clinical care, teaching and research 112 personhood in family context 104–​5
clinical, religious and cultural poems and prose pieces 111
influences 86 proto-​hospices 44
close professional links 112 publications 101–​3, 111, 138
community, sense of 90–​1, 92, 105, public health 218
107, 112 qualifying in medicine 88
continuity of care 96 Raven’s Cancer 59
cure and care systems 108 relatives’ involvement 96
decision to study medicine 88 religious peace 101
diagnosis and prognosis, telling religious and spiritual foundation of
patient 101 institution 89, 90, 91–​2 , 93
dignity of dying 89 retirement from full-​t ime role of medical
‘Don’t just do something, sit there’ 208 director 133
euthanasia debates 105, 209 St Christopher’s Hospice 87–​91, 93–​4,
and Exton-​Smith, A.N. 72 96–​7, 100–​1, 103–​11
faith 109–​10 St Columba’s Hospice 41
family of patient, focus on 104, 112 St Joseph’s Hospice 43, 88–​9, 120
first book (1978) 108 St Luke’s Home for the Dying Poor 42, 88
First International Congress on the St Mary’s School of Medicine 88
Care of the Terminally Ill Scheme, The 90
(1976) 163–​4 science and art of caring 106
Foreword in Oxford Textbook of Palliative sick leave (1969–​70) 110
Medicine 27 spiritual aspects 91
formulation of idea for hospice staff morale 108
movement 89–​96 staff’s children, involvement of 106
funding from Sir Halley Stewart Trust 88 student at Oxford 88
home care service 112 student nurse at Nightingale Training
hospice movement 90, 109–​10, 111 School 88
Incurable Patients Bill 105 teaching 89
influence and reputation, growth of 112 total pain 112, 131, 132, 135, 188
interdenominational character of St underlying convictions 93
Christopher’s 92 unrelieved pain reported by families 106
international networks/​v isits 112, 151 visits to United States -​1963 96–​9
236

236 Index

Saunders, Cicely (Cont.) Stjernswärd, Jan 123, 159–​60, 169

visits to United States -​1965 99–​100 Stoddard Holmes, Martha 20, 23, 26, 27
visits to United States -​1966 100–​1 Strange, Julie-​Marie 6–​7, 27
volunteer workers 112 Strauss, Anselm 81, 99–​100, 101, 102
welcoming patients, importance of 106 stroke patients 212
‘What’s in a name?’ 155 sudden death, evaluation of 6
wider influence 111–​13 suicide tourism 214
and Wilkes, Eric 75 surgical sectioning of spinal cord or brain as
working outwards from homes for the method of pain relief 121
dying 86–​7 Sweetser, Carleton 98, 102
World Health Organization (WHO) Swerdlow, Mark 123–​4, 135
booklet 161 Switzerland 214, 215
Savory, Sir William 15, 18 syringe driver 135–​8
Scheme, The 90
Schofield, Alfred T. 40, 41 Tarner Home 86–​7
scientific learning, encouragement and Tasma, David 88, 109, 112
funding of (Marie Curie) 141 Taubert, Mark 13
Scottish Partnership for Palliative Care 142 Taylor Memorial Home of Rest 86
sedation therapy (palliative) 210–​11 teamwork, dependence on and relationship
self-​help 87 to curative interventions 160
sequestration of the dying 35 tetanus 15
Sertürner, Friedrich 21 Thurlow, Lord 108
Servants of Relief of Incurable Cancer titration 134
(United States) 38–​9 Tooke, John 155
service organization 63 total pain concept (physical, emotional,
Shaw, Rosalie 174 psychological, social and spiritual
Sheldon, Frances 166 elements) 78, 112, 118, 131–​8, 142,
sick room environment 54 154, 188, 203, 209
Simone, Gustavo de 171 radioimmunoassay 134
Sir Halley Stewart Trust funding 88 syringe driver 138
Sisters of Commaunaté, Grandchamp, titration 134
Switzerland 91 treatment refusal or delay in seeking 62–​3
size of hospices, limiting 53 Trollope, Anthony 19
‘slippery slope’ argument 217 trust between doctor and patient and nursing
Sloan Kettering Institute for Cancer staff 53
Research (New York) 70 tuberculosis 2, 14, 21, 24, 38
Snow, Herbert 23–​4 clinical culture 50, 51, 52
social activities and distractions for patient 53 decline in incidence 55
social issues 62–​6, 160–​1, 211 St Joseph’s Hospice 42–​3
social work perspectives 142 sanatoria 34
social world of dying and death 2–​4 see also phthisis (pulmonary tuberculosis)
Soros, George 168 Twycross, Deidre 117
‘soul-​cures’ 45, 54–​5 Twycross, Robert
Soule, Theodate 97, 102 at St Christopher’s 117, 152
South Korea 171, 179 and Brompton Cocktail 126–​31
Spain 215 Bruera, Eduardo on 171
speciality recognition see palliative medicine cancer pain 122–​4
specificity theory of pain 69 and Luzack, Jacek 169
specific pain syndromes 212 morphine and diamorphine 106, 153
Spender, John Kent 23 Mount, Balfour on 107
spiritual care of patient and family 47–​8, 54, Rajagopal, M.R. on 173
81, 88, 91, 160–​1, 211 specialization 151, 157
Sprott, Norman 51, 52–​3, 55 total pain 134, 135, 136
staff and WHO analgesic pain ladder 160, 162
children, involvement of 106
morale 108 uncertainty about dying 54
pain 135 United Nations (UN) 177, 220
support 135 Commission on Human Rights 176, 221
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Index 237

Committee on Economic, Social and Webster, Charles 60

Cultural Rights 221 Weisz, George 150
Programme on Ageing (2002) 163 welcoming patients, importance of 106
United States 8, 9, 17, 26, 38, 69–​70 welfare state and National Health Service
accreditation for hospice and palliative (NHS) 60
medicine 213 Welldon, Ron 108, 127
assisted dying legalization in some Wenk, Roberto 171
states 214, 216 West, Betty 92
cancer pain 121–​2 West, Tom 95, 103
‘death groupies’ 119 whispered conversations, avoidance of 16
Global Quality of Death Index 179–​80 Wilkes, Eric 59, 74–​5, 80, 137, 138
Harrison Narcotic Act (1914) 21–​2 Wilkes Report 140
hospitals and medical progress 10, 34–​5 Williams, Samuel 26
Medicare funding for hospice care 85, 180 Winner, Dame Albertine 90
National Research Council 69 Wood, Alexander 21
new evidence 74 Wootton, Baroness 105
Oregon Death with Dignity Act 216 Worcester, Alfred 18, 53–​4, 67, 72, 200
palliative care, public’s views on 207 World Health Assembly 163, 182, 205, 218
quality of life 206 World Health Organization (WHO) 117–​18,
research and service development 138 159–​63, 165, 176, 182, 188, 218
speciality status 185 analgesic pain ladder 123–​4, 131, 159, 160,
university chair in palliative care field 157 162, 171–​2
Better Palliative Care for Older People 168
valorization of dying 78 Cancer Control Programme 175
variety and individuality of ways of dying 16 definitional problems 205
Venice Declaration (2006) 175 Europe 183
Ventafridda, Vittorio 122–​4, 129, 134, 162, foundation measures: drug availability,
165, 169, 171 education, policies and
Vere, Duncan 69, 130 implementation 219
visions and hallucinations 54 Palliative Care: The Solid Facts 168
voluntarism and volunteers 79, 87, 112, 142 Programme for Cancer Pain Relief 122–​3
voluntary euthanasia 26, 71, 213 World Hospice and Palliative Care Day 175
Voluntary Euthanasia Legislation World Medical Association 177, 220
Society 70–​1, 72 Worldwide Hospice and Palliative Care
von Gunten, Charles 186 Alliance (formerly Worldwide
Palliative Care Alliance) 177,
Wald, Florence 85, 98–​9, 100–​1, 201 182, 220
Wallace, Jack 90 Wright, Martin 135–​7
Wallenstein, Stanley 102 Wyon, Olive 90–​1, 92, 93, 108, 138
Wall, Patrick 18, 27
Waltham Training School for Nurses 53 Yodogwa Christian Hospital (Japan) 171
Wantage, Sister Penelope 90 You Are a Bridge (film) 207
watchful waiting 53
Watson, Sir Thomas 16 Zorza, Victor 184
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