To comfort always : a history of palliative care since the nineteenth century

257 Pages·2016·4.214 MB·English

by  Clark, David

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To Comfort Always
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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
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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
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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.
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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.
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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
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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— the 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