Table Of Content00 Prelims 1328 12/05/2005 11:12 am Page i
Compassionate Cities
Public health and end-of-life care
Imagine if communities really cared about their members’ health and social
well-being. Imagine if that care extended to the dying, death and loss expe-
riencedbyeveryoneinthosecommunities.Imagineiftheideaof‘death’went
beyond physical death and included the deaths of identity and belonging as
experienced by those living with dementia or the aftermath of sexual abuse
and dispossessed indigenous or refugee peoples. Such frameworks do partly
exist in the World Health Organization’s ‘Healthy Cities’ programs, but
end-of-life care issues are often neglected. This book addresses these con-
cerns and explores how compassion embraces empathy and support as new
forms of ‘health promotion’.
Beginning with an examination of the parallel histories of public health
and end-of-life care, the book then critiques the limits of both. The theory
and policy ideas of Healthy Cities are introduced and compared with
those of Compassionate Cities, and the strengths and weaknesses of such
large-scale programs are examined. The final sections of the book outline
basic models of community development and strategies for implementing a
Compassionate Cities program.
This is a book for practitioners who want to include end-of-life care issues
or community development and health promotion ideas in their practices,
and for anyone interested in social sciences, public health and end-of-life
care. It argues that the integration of death, loss and compassion into con-
temporary public health ideas may address its limits and criticisms and help
to create practical policies for future domestic and international well-being.
Allan Kellehearis a sociologist and Professor of Palliative Care at La Trobe
University in Melbourne, Australia. In 2003–04 he was Visiting Professor
of Australian Studies at the University of Tokyo, Japan. His previous works
studying dying and its care include: Dying of Cancer: The final year of life
(1990); Experiences Near Death: Beyond medicine and religion (1996); and
Health Promoting Palliative Care (1999).
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Compassionate Cities
Public health and end-of-life care
Allan Kellehear
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First published in 2005 by Routledge
2 Park Square,Milton Park,Oxfordshire,OX14 4RN
Simultaneously published in the USA and Canada
by Routledge
711 Third Avenue,New York,NY 10017
Routledge is an imprint of the Taylor & Francis Group, an informa business
© 2005 Allan Kellehear
Typeset in Sabon MT by J&LComposition,Filey,North Yorkshire
All rights reserved.No part of this book may be reprinted or
reproduced or utilised in any form or by any electronic,
mechanical,or other means,now known or hereafter
invented,including photocopying and recording,or in any
information storage or retrieval system,without permission in
writing from the publishers.
British Library Cataloguing in Publication Data
A catalogue record for this book is available from the British
Library
Library of Congress Cataloging in Publication Data
A catalogue record has been requested
ISBN 978-0-415-36772-1 (hbk)
ISBN 978-0-415-36773-8 (pbk)
00 Prelims 1328 12/05/2005 11:12 am Page v
In memory of the life and work of Miki Sawada
Magnum bonum
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Acknowledgements
I would first like to thank my friend and colleague Ruth Beresford for
patient and dedicated attention to the typing and formatting of this manu-
script. A number of friends and colleagues have also provided critical feed-
back, suggestions for reading, and discussion opportunities to assist me in
improving the arguments and evidence underlying this book.
I have benefited from Jan Fook’s experience and interest in critical reflec-
tion, critical social work and postmodern writing. Michael Ashby has
brought the considerable weight of his clinical experience in palliative med-
icine and his commitment to a wider social understanding of living and
dying to ground my thinking in public health and palliative care. Likewise
Patrice O’Connor gave me valuable feedback and encouragement on an
earlier draft. Bruce Rumbold assisted me, as he always does, with readings
in history and contemporary debates about palliative and pastoral care.
Trevor Hogan and Paul Sinclair guided my reading in social theory and
social role valorization, respectively. Ken Dempsey supported and guided
my reading in community studies. I am also grateful for the support and
enthusiasm for the idea of compassionate public health that I have received
from Stuart Twemlow, my friend and colleague from the field of psycho-
analysis.
All of these friends have helped me tread the fine line in emphasis that
this kind of interdisciplinary book must negotiate between public health
and palliative care, between vision, theory and practice issues, and between
the importance of appreciative and critical observations. Although I have
been committed to carefully negotiating these tensions, my attempts would
have been much the poorer without the generous guidance of their criticism
and feedback.
I extend my deepest thanks to each of them.
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Contents
Preface viii
1. The social roots of organized care for the dying 1
2. Current approaches to end-of-life care 17
3. Theoretical foundations of Compassionate Cities 37
4. Policies of Compassionate Cities 59
5. The social character of Compassionate Cities 81
6. Threats to Compassionate Cities 97
7. Implementation: making it happen 117
8. Action strategies 137
9. The future: a third-wave public health? 157
References 165
Index 173
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Preface
Death and loss continue to be misunderstood despite being the most uni-
versal and routine human experiences of all. For too long we have viewed
death as the enemy of health when in fact it was illness and disease that
properly occupied that place. We often identify death as a threat to or a
failure of public health policies and initiatives. But this too is untrue.
The aim of all health care has always been to prevent premature death
and unnecessary harm and to promote healing and well-being. In so far as
death creates additional harm beyond itself, that impact is a necessary tar-
get for all good public health scholarship and practice. End-of-life care, in
all its endlessly diverse expressions in daily life, is and should be the serious
subject of public health investigation, policy and practice. The purpose of
this book is to alert and help reorient public health to this universal set of
human experiences.
The inevitability of death and the universality of loss are facts and mean-
ings to understand. Their presence does not pass judgement upon our flimsy
defences against them. Death and loss are experiences that challenge us to
understand their role in shaping an individual’s values and priorities, and
through those personal alterations the very course of a nation’s diversity of
health experiences and histories. And all this goes on in every community,
every day, this very moment, even as you read the words on this page.
From the personal experiences of dying, loss and grief to their subtle
but strong presence in communities, or the living histories surreptitiously
generated by them, or through further deaths that can be traced to ear-
lier ones, the broader experience of death properly belongs inside – not
outside – the gaze of public health. We have been slow to develop these
public health insights. Sometimes we have even failed to recognize them
at all.
Frequently we leave death and loss to the psychological professions and
in this way support the falsity that death is an individual and private mat-
ter. Or we hand the problem of mortality to hospice and palliative care, giv-
ing them, and anyone else who looks on, the equally false impression that
end-of-life care is merely terminal care, care in the final weeks and days of
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Preface ix
life. In these two professional storylines we no longer speak about the
universality of loss or the commonplace ordinariness of death, dying and
loss. And except for significant disasters, we seldom recognize every
individual’s death and loss as a community experience.
Consider the two following examples of how professional responses to
end-of-life care currently shape and colour our everyday experiences and
ideas about death and loss. In hospice and palliative care we frequently
speak about ‘whole person care’ – the care devoted to the physical, psy-
chological, social and spiritual dimensions of an individual life. But within
the narrow confines of a health service so much of the attention to these
aspects of a person is translated into occupational responses. We have doc-
tors, nurses, social workers and counsellors. But sometimes these profes-
sions are viewed as inadequate to the complex needs of a person or their
family, so yet more professions are recruited – massage therapists, aro-
matherapists, music therapists, pet therapists, occupational therapists or
physiotherapists. And it doesn’t end here either.
Every year more ‘needs’ of the dying person or their families are identi-
fied, analysed, debated or discussed in the academic and professional pal-
liative care literature. This is followed by suggestions for yet other
professionals to meet those needs – chaplains, pastoral care workers, fam-
ily therapists, health-promotion workers or welfare workers. Where will the
list end? Will it be a case of identifying the need then naming the profes-
sional? Can we afford to keep assembling – should we keep assembling –
an occupational response to one person’s life every time they do something
as simple as enter a health service such as a hospice or palliative care
programme?
If we do not find a way to recreate community involvement at the end of
life this queue of professionals at the door of our homes and servicing our
identities will see no end. Without a community involvement, professional
involvement must become a rationalization and poor substitute for the mul-
tidimensional relationships that any one person enjoyed before encounter-
ing the local health service. The social and economic costs in permitting this
‘professionalization’ of death to continue are unimaginable.
But if palliative care has an explicit multidisciplinary response to death
the field of grief and loss is somewhat less occupationally expansive, and yet
this field has a more popular impact on public attitudes than palliative care.
Recently two students were shot dead at one of the local universities in my
city. I watched the television news coverage of the aftermath and was struck
by a reporter’s final observations in her report: ‘Students and staff at the
university are being provided with counselling’. I would like to live in a
society where the first words about comfort and healing are recorded in the
following way: ‘...and staff and students are now talking and commiser-
ating with their friends and family’. But that will only ever happen, or hap-
pen with any surety, when we are confident that those friends and family
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x Preface
know what to say and what to do in these circumstances, i.e. the
circumstances of death and loss, expected or otherwise.
This book is about how we can begin to take those first steps towards
regaining what was formerly unremarkably common – the community care
of the dying and those living with loss. Although there are critical observa-
tions to be made in this book, it is not my intention to devalue the impor-
tant work of counsellors or the necessary and pioneering work of palliative
care in its work for people in the last weeks and days of life. Instead, I want
to remind readers that community care around matters of death, dying and
loss preceded professional care. I also want readers to remember that
although modern professional care in these areas improves every day, that
care remains unsupported, fragmented and incomplete without community
involvement before, during and after these experiences.
The question of seamless social support for end-of-life care finds its
answer, however ambitious and daunting the task, in community care.
Questions of prevention, harm-minimization and aftercare issues find their
fullest answer in community care. Yet where are the public health argu-
ments and practice models for this type of community care and
engagement?
Most of this book is devoted to a sketch for a theory of practice drawing
upon the literature of community development, Healthy Cities and health-
promoting palliative care. I outline what I term ‘Compassionate Cities’: a
model of public health that encourages community participation in all types
of end-of-life care.
Far from adding death and loss to the ‘new’ public health as a set of pol-
icy ideas, I argue that policies and practices inclusive of end-of-life care
issues can be the basis of a radical reordering of priorities. A reordering of
public health priorities that makes death and loss central to practice can
build genuine empathy and this fact alone can re-energize any international
and domestic programme of health reform.
I attempt to develop these arguments around the following nine chapters.
I begin by tracing the social roots of organized care of the dying, compar-
ing and contrasting professional care with community care from around the
Middle Ages. I then compare the history of palliative care with the longer
history of public health and medical care, and outline the conceptual and
practice challenges for palliative care if it is to match those current
developments in public health and to apply that care to their own work.
Later I examine three of the key pretenders to social and public health
practices in end-of-life care – psychosocial palliative care, health-promoting
palliative care and normalization theory. I describe why I believe these
approaches are limited in their ability to develop a community focused
public health approach to end-of-life care.
The middle parts of the book are devoted to outlining the theory, philos-
ophy and policies of Compassionate Cities, linking these with their origins
