Negotiating death in contemporary health and social care 9781447342540

Citation preview

NEGOTIATING DEATH in contemporary health and social care

MARGARET HOLLOWAY

Negotiating death in contemporary health and social care Margaret Holloway

First published in Great Britain in 2007 by Policy Press University of Bristol 1-9 Old Park Hill Bristol BS2 8BB UK t: +44 (0)117 954 5940 e: [email protected] www.policypress.co.uk

North American office: Policy Press c/o The University of Chicago Press 1427 East 60th Street Chicago, IL 60637, USA t: +1 773 702 7700 f: +1 773-702-9756 e:[email protected] www.press.uchicago.edu

© Margaret Holloway 2007 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 catalog record for this book has been requested.

ISBN 978 1 4473 4254 0 EPDF The right of Margaret Holloway to be identified as the author of this work has been asserted by her in accordance with the 1988 Copyright, Designs and Patents Act. All rights reserved: no part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise without the prior permission of The Policy Press. The statements and opinions contained within this publication are solely those of the author and not of The University of Bristol or The Policy Press. The University of Bristol and The Policy Press disclaim responsibility for any injury to persons or property resulting from any material published in this publication. The Policy Press works to counter discrimination on grounds of gender, race, disability, age and sexuality. Cover design by Qube Design Associates, Bristol Front cover: photograph supplied by kind permission of Simon Cataudo.

The Laughing Buddha Beside the pond in our garden is a statuette of a laughing Buddha. He stands with arms stretched upwards in joyous celebration. Except that one arm is broken, the missing piece resting on the ground next to his feet.When the accident happened, I asked my husband to stick the piece back on. Noticing that the repair went undone for some considerable period of time, I enquired as to whether there was a problem. ‘I quite like it like that’, was the response. Over time I have come to agree with him. The wounded laughing Buddha speaks of joy reaching through pain, of severed connections nevertheless sustained. It has more to say than the perfect model.

Death in late modernity

Contents List of tables and figures vii Acknowledgements viii one

Death in late modernity Introduction Causes and patterns of death Death in the UK Globalisation of death Shifting boundaries between the public and the private Cultural pluralism Conclusion

1 1 4 5 13 15 18 20

two

Contemporary health and social care Introduction History of care of the dying Care management The health and social care interface Initiatives in palliative care Conclusion

21 21 22 24 25 28 34

three

Understanding death and dying Introduction Beliefs, ritual and symbolism Modern death The revival of death Attitudes and beliefs about death Dying Conclusion

37 37 38 42 46 49 57 62

four

Understanding bereavement and grief Introduction Attachment and loss Stage theories Dual process Continuing bonds Complicated grief Meaning-making Special deaths Grief across cultures Conclusion

65 65 67 69 74 75 76 80 83 87 90



Negotiating death in contemporary health and social care five

Dying in the twenty-first century Introduction Philosophies and ethos of care Euthanasia and assisted dying Conclusion

93 93 94 106 115

six

Dying and bereavement in old age Introduction Death in old age in the UK The ‘dying phase’ of life Care at the end of life Bereavement and grief in old age Conclusion

119 119 120 122 125 136 143

seven

The aftermath of death Introduction Funerals Burial and cremation Memorials Conclusion

145 145 146 154 160 162

eight

Integrating theories and practices Introduction The context of late modernity Applying theory to practice Holistic approaches In conclusion – negotiating death

165 165 166 170 177 181

References Index

vi

183 209

Death in late modernity

List of tables and figures Tables 1.1 1.2 1.3 1.4 3.1 3.2 3.3 4.1 4.2 4.3 4.4 6.1 6.2 8.1

Variations across the UK Peak ages and proportion of deaths in age group Merging of the public and the private in funerals Public and private aspects of care Typology of concepts of death Kostenbaum’s values by which people live Contemporary stances on death Stage theories Worden’s affects of grief Special deaths Special deaths of late modernity Elderly deaths 2004 by, gender Selected specific causes of death where elderly deaths form high proportion of total deaths Typology of death – disciplinary focus

6 10 17 18 52 56 57 70 77 83 87 120 122 170

Figures 1.1 1.2 1.3 1.4 1.5 1.6 1.7 1.8 1.9 6.1 6.2 6.3 8.1

Death rates in the UK 2004, by age and gender Death rates aged under one year, by Government Office Region Death rates at older ages, by Government Office Region Cause of death in the UK by gender Major causes of death in younger people 2004 Major causes of death in older age groups 2004 Place of death 2004 Main places of death, by age group and gender Place of death, by age group Causes of death 2004, by age group and gender Causes of death in the elderly in relation to deaths at all ages Places of death, by age group Bereavement as psychosocial-existential transition

5 6 7 8 9 9 11 12 12 121 121 126 171

vii

Negotiating death in contemporary health and social care

Acknowledgements

Many people are owed my deepest thanks for their help and support. But for the insistence of the late Jo Campling this book might never have been written. Sue Adamson, Ben Fell and Jeanette Gilchrist undertook the comprehensive literature searches which provide the foundation for Chapters Five, Six and Seven. Sue Adamson is owed especial gratitude for compiling the mortality statistics contained in Chapters One and Six. John Creasey, Janet Dean, Anne English, Maureen George, Jo Gillespie, Ruth Hunter, Elaine Longley, Tracey Oliver, Wendy Price, Petra Van der Zand, Jill Walmsley and Ben Zylic generously provided me with a rich source of up-to-date case material and shared their professional selves with great honesty.Thanks are also due to Judith Hodgson for her endless enthusiasm for the project. My colleagues at the University of Hull generously allowed me time, and last but by no means least, my family have been endlessly patient with my pleas to be left alone! If I have done justice to them all, I am glad. If faults remain, they are mine alone.

viii

Death in late modernity

One

Death in late modernity Introduction If there has to be a reason for another book on death, dying and bereavement, it is this: a subject which is of timeless significance for human beings as individuals, nevertheless is experienced in a social context, and that context is changing rapidly, irreversibly and, some would argue, fundamentally. Health and social care practitioners are both affected by these changes on a personal level and as professionals must negotiate their role and task to take account of this changing scene. It may be true that death is a universal human experience and in this sense the great leveller, but in every other respect it seems that dying and bereavement throw up a complex mesh of issues unique to the individual, yet shaped by prevailing social, political, legal, economic, philosophical, religious and cultural imperatives.The overarching theme of this book is that process of negotiation; its quest is the search for a knowledge base which is relevant and a practice framework which is ‘fit for purpose’ in contemporary health and social care settings. There is one principal limitation concerning the scope of the book which must be acknowledged at the outset. Neither global context nor cultural variation can be covered exhaustively although both are key themes in the argument and international examples and multicultural references are woven throughout.There is admittedly something of a focus on the UK but it is to be hoped that this serves to provide an in-depth starting point rather than exclusive discussion. In this process of ‘negotiating death’ it is the context of the twenty-first century which determines the prevailing attitudes to death, the practices created to mark its occurrence and the accommodation of the experiences of dying and bereavement. There are individual, societal and specific community dimensions to that context, each of which makes its own very particular contribution to what may be termed the ‘management’ of death and dying. The individual makes his or her unique response on an emotional, psychological and spiritual level. This response is shaped and mediated by the society in which the individual is located, with its cultural, religious and behavioural norms – all of which tend to be remarkably prescribed where death is concerned. These social norms tend to be conveyed and impinge upon the individual through the response of their immediate community – although the relative influence of society and community in different environments is one of the issues with which we are concerned. As individuals we variously reflect such influences. As practitioners, we need to understand them with a breadth and depth which far extends our personal perspective. This complex context influences what practitioners feel able to talk about, and how, 

Negotiating death in contemporary health and social care

requiring sensitivity to a wide range of cultural perspectives and practices and the knowledge and skill to address them. It determines the response which they and their service organisation are able to make. The Australian government, for example, ordered a high-profile response through its own social work agency to the very public and traumatic disaster of Bali, where action taken by the UK government was deemed to be too little too late and not involving counselling agencies at all. Throughout this book we shall be exploring the knowledge base which will help us to engage with this context. Postmodernism In order to grapple with such a vast and challenging terrain, four factors will be considered which, arguably, are the principal shapers of contemporary death: the predominant causes and patterns of death; the globalisation of death; shifting boundaries between public and private domains; and, finally, cultural pluralism. As these headings suggest, they are each in their own way concerned with change, and they each cut across traditional academic boundaries to appear as connecting themes.These ‘interconnecting conversations’, or discourses, are a feature of a phenomenon which has come to be known as postmodernism. In this book we shall characterise the contemporary period as ‘late modernity’ because while the features of contemporary death have emerged out of modern societies, the picture being one of gradual shift which establishes a new order, but is still, in many ways, connected to the old. In order to better understand this process, however, it is helpful to look first at what is meant by postmodernism and its relevance to the study of death. Christopher Butler, in his ‘Very Short Introduction’ to Postmodernism, characterises the intellectual stream of the movement as an ‘excessively critical self-consciousness’ (Butler, 2002, p. 6), which eschews overarching theory, claiming that all interpretations are partial and belong to the ‘actor’ who appropriates them. From this starting point, it is not surprising that postmodernist thought becomes preoccupied with themes of individual autonomy, of self and identity, of diversity and moral relativity, its hallmark being ontological uncertainty. Postmodernism is also a social movement, however, whose players are connected by the desire to resist narratives which have worked to bolster the power of a dominant group and oppress others; the most widely recognised example of this is the construction of patriarchal society which works according to rules and definitions laid down by men to preserve their power and interests over women. There is thus a socially created self which may, however, be at odds with the individually experienced self. Personal identity is arrived at through the interaction of both. In fact, recent work on identity emphasises the notion of identity as process, reached through a constant negotiation between the social structuring of self and the operation of individual agency (Jenkins, 2004). How is this discussion relevant to contemporary death, dying and bereavement? First, and very simply, because it reminds us of the diversity of human experience in the face of a universal and irrefutable phenomenon. Postmodernist thinking 

Death in late modernity

also leads to the conclusion that the individual will make of their own death what they will. Small suggests that critical features of postmodernity for death are not simply consumerism, choice and difference, but the incorporation of reflexivity and irony, which ‘challenges not just established procedures but also the status of the significant’ (Small, 1997, p 205).This is particularly apt when we consider the attempts of professional helpers to guide dying and bereaved people through the best ways to die and to grieve and the laying down of prescribed care ‘pathways’ as ‘best practice’. Gradually, we are learning more about the expert wisdom of the service user. Another relevant theme is ontological uncertainty. Both Giddens and Craib are interested in ontological uncertainty in the face of death. Giddens suggests that in contemporary society we try to purchase ontological security through procedures and institutions which protect us from direct encounters with the reminders of those fundamental facts of existence which otherwise threaten us, such as madness and death. We try to find reliability in persons and things in order to shore up our sense of ourselves (Giddens, 1991). For Craib, however, the ‘fragmented self ’ is a condition of contemporary society and the ‘disappointed self ’, one which knows it does not have ultimate control, the only authentic position to surface in the face of death (Craib, 1994). Contemporary bereavement research is very much concerned with what happens when the narrative or script for my life or yours is disrupted or replaced. Positions of moral relativity may at first sight seem to capture the ethics of end-of-life decision making and care but in fact here we find moral absolutes bumping into each other, particularly for the doctor whose duty is both to relieve suffering and to sustain life. Moreover, such positions are dictated by religious and cultural imperatives which may brook no negotiation of the relationship between human agency and the boundary of life and death. Nevertheless, we find such negotiation of necessity going on in the context of pluralist societies. The importance of culture in postmodern theorising cannot be overstated. Culture as a concept has the capacity to embrace sociological, philosophical and psychological perspectives, allowing it to emerge from the static descriptions used to characterise societies in the second half of the twentieth century. Culture has come to denote a more dynamic interplay between concepts of identity and meaning, policy themes, organisational constructs and organised practices. It is thus a crucial concept when we come to look at death, dying and bereavement. Cultural pluralism also generates plural identities for the individual. Both feminism and disability politics have rediscovered that the individual may experience several identities simultaneously and these are not necessarily hierarchically ordered. They may, however, be situation-dependent. ‘Who am I?’ is a question which the dying or bereaved person may find hard to answer, and sometimes begs the question ‘Who are you?’ before communication can be established. Questions of individual and social identity are crucial to the way in which death is approached and managed, whether the role is as a dying or bereaved person, a helping person or professional, or an affected community. 

Negotiating death in contemporary health and social care

Finally, what does postmodern theorising contribute to our theorising of death, dying and bereavement? An understanding of death which is embedded in context but does not seek overarching explanation seems an appropriate quest for the better understanding of contemporary dying and bereavement. At the same time, we are constantly brought back to death’s fundamental and universal relationship with human existence; Beckford, in his critique of postmodernist thought on religion and society, reminds us of the importance of anchor points if we are to better understand and progress (Beckford, 1996). Butler (2002) concludes that postmodernism has provided a useful and timely critique but it does not supersede all other intellectual traditions.

Causes and patterns of death One of the most important determiners of the way in which death is managed in any society is its demographic profile: who is dying, at what ages, from what causes, in what physical and social circumstances? The literature on which health and social care professionals may draw to begin to understand the experiences of dying and bereavement has been built up from research and clinical practice which has largely focused on death in two categories: first, death from terminal illness, which has tended to mean cancer; and second, deaths which are in some way ‘special’, predominantly a range of ‘sudden deaths’ such as suicide, in public disasters (although disaster theory developed more recently in the 1980s), or untimely deaths, such as the death of a child.Whilst these categorisations continue to have relevance, they provide us with only a partial picture of death in the early twenty-first century. Moreover, examination of the causes and patterns of death, looking at current figures, trends and forecasted mortality rates, suggests that the majority dying is shifting, particularly in developed countries. The pattern now emerging relates to the phenomenon of population ageing. Although it is common to refer to an ageing population, there are a number of variations on this trend, which are significant when it comes to the picture of death in any one society at a given time.The ‘problem’ of an aged dependent population was first noted in northern and western Europe, where we see slow ageing of an already aged population, produced through a combination of static birth rates and slowly falling death rates. This pattern also applies to America, Canada and Australia but here it is combined with markedly higher death rates among younger immigrant populations. Japan, China and Latin America, meanwhile, are experiencing very rapid ageing, resulting from low birth rates alongside falling death rates. In most parts of the developing world, by comparison, we see relatively slow ageing, where in a previously young population, death rates are falling faster than birth rates, which, however, are also falling. Finally, in Eastern Europe and the former USSR, low birth rates and static death rates combine to produce slow ageing but from an intermediate position (Wilson, 2000). Overall, the World Health Organization predicts that average life expectancy worldwide will be 75 years by 2025, with no country less than 50 years, but this in fact tells 

Death in late modernity

us very little about the experiences of dying or bereavement in any one country. So, for example, the homicide rate in Russia had climbed to the highest in the world by 1993–4 (Seale, 2000) and the AIDS pandemic has significantly set back parts of Africa, as well as creating a generation which is both orphaned and HIV positive. Meanwhile, the UK and US are preoccupied with large numbers dying in very old age from, or with, chronic diseases – the Institute of Medicine quotes 2.4 million Americans dying in old age each year (IOM, 2003). Despite this majority pattern of dying, the UK has some startling pockets of social and health inequalities, which makes sobering reading for a developed country in the twenty-first century.

Death in the UK The 2004 death rate for all ages in the UK was 9.5 per 1000 population for males and 10.0 per 1000 population for females. There are more male deaths in all age groups except those aged 85 and over where there are more than twice as many female deaths.There is a general increase in death rates and numbers of deaths with age, and higher rates per 1000 population at all ages in males than in females. Figure 1.1: Death rates in the UK 2004, by age and gender 180

Male

160 Female Deaths per 1000 population

140 120 100 80 60 40 20 0