Review article: the sociology of dying, death and bereavement

Authors


Address for correspondence: Catherine Exley, Centre for Health Services Research, School of Population and Health Sciences, University of Newcastle upon Tyne, 21 Claremont Place, Newcastle upon Tyne, NE2 4AA. e-mail: catherine.exley@ncl.ac.uk

Cobb, M. The Dying Soul: Spiritual Care at the End of Life. Buckingham: Open University Press, 2001 £16.99 (pbk) vii + 145pp

Currer, C. Responding to Grief: Dying, Bereavement and Social Care. Basingstoke, Hampshire: Palgrave, 2001 £14.50 (pbk) v + 181pp

Field, D., Clark, D., Corner, J. and Davis, C. (eds) Researching Palliative Care. Buckingham: Open University Press, 2001 £22.50 (pbk) vii + 198pp

Hockey, J., Katz, J. and Small, N. (eds) Grief, Mourning and Death Ritual. Buckingham: Open University Press, 2001 £19.99 (pbk) vii + 286pp

McNamara, B. Fragile Lives: Death, Dying and Care. Buckingham: Open University Press, 2001 £17.99 (pbk) v + 165pp

Seymour, J. Critical Moments – Death and Dying in Intensive Care. Buckingham: Open University Press, 2001 £17.99 (pbk) xiii + 185pp.

Introduction

The sociological study of dying, death and bereavement is a relatively recent field of research interest. In 1958, Faunce and Fulton wrote a paper entitled ‘the sociology of death: a neglected area of research’, their argument being that the lack of sociological research in this area was probably attributable to a wider reluctance within society to contemplate dying and death. However, despite Walter's (1993) claim that (with the exception of medical sociology) British sociologists had been notably quiet in this topic, it would seem from the research literature that the number of sociologists researching in the area of dying, death and bereavement has increased significantly, particularly in the last 10 to 15 years.

The aim of this review is to outline the work that sociologists have conducted with regard to dying, death and bereavement. Within this discussion, I locate and review the six books listed above, ending by reflecting on what sociological research related to dying, death and bereavement might explore in the future. Reviewing the work of sociologists in this field is no small task given the diversity of research that has been, and continues to be, conducted. Indeed, it is testament to the wealth of material published by social scientists that I have such a broad range of books to review. The six books cover topics that include the experiences of dying and death in the high-tech world of Intensive Therapy Units (ITUs), a reflection on the difficulties of providing ‘spiritual’ care, and an edited collection introducing the research methods used within palliative care research. Given the burgeoning amount of research related to dying, death and bereavement which has developed in recent years, in this review I focus primarily on the work which has been conducted within Britain, referring only briefly to some work undertaken in the US. Before, however, considering specific examples of the work of sociologists in this field, I think it is important to look, albeit briefly, at how we as a society and as individuals manage dying and death, an area to which sociologists have made active contributions.

There has been much academic debate (see Kellehear 1984, Walter 1991, Seale 1998) about the extent to which dying and death remain ‘taboo’ in Anglophone societies. This is not a debate I can possibly do justice to in the space of this review, but it is important to note that experiences and understandings of dying, death and bereavement in modern society are contradictory. In a world full of instant mass media which can be ‘beamed’ to our homes ‘live’: dying, death and the experiences of grief are all too common images on our television screens, in newspapers and on websites; to this extent death is ever-present in our lives. This, however, is the death and suffering of ‘others’ to be watched and observed, but something we often find difficult to relate to on a personal and individual level. As a society we value youth, health and fitness (Featherstone 1982). Dying and death is something associated with older age – those who may be regarded as having little economic or social value to society and its continuing function (Glaser 1966, Turner 1995). At a societal level, dying and death are managed very well, generally having little or no impact on its smooth and productive running. However, it remains the case that many of us as individuals ‘remain characteristically uncomfortable with the facts of mortality’ (Mellor and Shilling 1993: 423).

At an individual level we are able to discuss dying and death in the abstract, that is, as an event we know we will encounter at some unknown point in the future. But, when confronted with the realities of these phenomena many of us are less able to talk openly. Anyone who has experienced bereavement, or has been close to someone who was dying, will be able to recount stories of when people were ‘uncomfortable’ or ‘did not know what to say’. At an individual level death has become increasingly institutionalised: the majority of us will die in a hospital or long-term care institution attended to by professional strangers. Increased life expectancy means that the ‘private’ face of death is something many of us will not encounter at a personal level until mid-adulthood, and when we do, we may face an uncertain time in terms of grieving and mourning procedures, as more traditional rites and practices have been eroded in our increasingly secularised society. So, as Walter (1991) argues, dying and death do not threaten society, which deals with it very well by prizing their antitheses: youth, health, vitality. Those, however, who are dying and who are bereaved consequently become ‘uniquely isolated, lepers even, because they highlight the Achilles heel of the modern individual’ (Walter 1991: 306).

It is difficult to quantify the impact sociologists working in any given field have on those practising within it. However, if one accepts the presence (or absence) of such work in the literature directed towards healthcare professionals as being indicative of such success (or failure), a review of any back copies of specialist palliative care journals will identify a number of sociologists writing for practitioner audiences. More recently within the British Medical Journal, both Clark (2002) and Walter (2003) have written sociologically informed articles about the management of dying and death in our society. Indeed, it is true to say that much of the research conducted by sociologists in this area is conducted as part of multi-disciplinary teams, and serves as a good example of how it is possible to produce theoretically robust work based on empirical research which is relevant for healthcare planning and delivery. Sociologically informed work is regularly presented at palliative care conferences and the bi-annual international conference on Death, Dying and Disposal. Within Britain there is an active group of academic researchers who meet annually at the Social Aspects of Death, Dying and Bereavement Symposium. This group first met in 1990 at the University of Leicester, attracting sociologists and those from other academic disciplines and healthcare practitioners alike, and has generated three edited collections (Clark 1993, Field et al. 1997, Hockey et al. 2001). In addition, to these publications, there is now a well-established and highly-regarded series of texts published as part of the Facing Death series edited by David Clark (four books from this series are included in this review). In addition, in 1996 the journal Mortality was first published addressing issues related to dying, death, bereavement and memorial. Both Facing Death and Mortality are multidisciplinary in scope, but their establishment and continuing success was led by sociologists – David Clark, David Field, Glennys Howarth, and Peter Jupp – researching within this area.

Sociology and dying and death

The work of sociologists in the study of dying, death and bereavement dates back to the 1960s in the United States, when the first (and still influential) empirical observational studies looking at the care of people who were dying were conducted within hospitals (Glaser and Strauss 1965, 1968, Sudnow 1967, Strauss 1970). Such research fundamentally changed the way people thought about the management of dying and death, and brought into sharp relief the experiences of those who were dying within a hospital environment. Work in Britain has also explored the management of dying and death within both the acute hospital setting and hospice settings (e.g.Field 1989, Seale 1989, May 1992). Such work has sought to challenge some of the taken-for-granted assumptions of palliative care, which at times has been uncomfortable for services and healthcare practitioners alike, but has, at least, opened up the debate about what palliative care can and does achieve. James and Field (1992), for example, suggested that the provision of palliative care within hospices, far from being individualistic and holistic, and notably different from the care delivered in hospitals, was, in fact, becoming increasingly ‘routinised’. This was a challenging paper that caused much reflection (and disquiet) amongst palliative care healthcare professionals. Another example is Lawton's (2000) seminal ethnographic study of the care provided within an NHS hospice. This work has been particularly influential, and challenging, in terms of palliative care provision. In particular, her graphic and moving account (Lawton 1998) of the management of leaking, failing bodies –‘dirty dying’– hidden away within the hospice, had a significant impact both for those of us researching in this area but also for palliative care practitioners themselves. The public image of hospices facilitating dignified or ‘good’ deaths was challenged as she sought to examine what happens when people's bodies fail them in the most socially unacceptable of ways, leaving them devoid of personal identity and unable to engage any longer on any meaningful level with significant others because their physical bodies have failed them so badly.

In her book Fragile Lives: Death, dying and care McNamara also focuses on the care delivered to people at the end of life in Australia. Her discussion is based on ethnographic research she conducted with healthcare professionals (predominantly) and dying people and their families. In this well-written text she skilfully weaves the accounts and experiences of her respondents with other research literature, and engages with topical debates within palliative care including euthanasia and the value of the notion of the ‘good death’. In her methodological appendix, she also provides the reader with a personal and candid insight into how she conducted her ethnographic fieldwork; written in such a way as to be accessible to those less familiar with this kind of research. McNamara provides a particularly useful account of the way in which cancer is viewed and responded to in modern society, and the impact this has on those who are themselves diagnosed with a terminal condition. The chapter on ‘the uncertain worlds of terminally ill people’ provides a poignant and well-illustrated discussion of the world of ‘stranger’ which those who are aware of their own dying find themselves inhabiting in our society.

Terminally ill people live until they die, but their living is irretrievably changed as they begin to live their dying (p. 66).

Her final chapter ends with some thought-provoking debate for those delivering palliative care:

Where postmodern dying finds us bereft of ways to approach death as a collective, medicalised dying pushes the phenomenon of death away through technology and pretence (p. 121).

Are people being ‘enabled’ to ‘live’ to the end of their lives to the extent that they are no longer confronting the reality of their own death? This book is beautifully crafted and written in such a way as to be interesting to sociologists, as well as to a much broader audience; it is a book which should be read by anyone with an interest in health and illness.

Seymour's Critical Moments – Death and Dying in Intensive Care, in David Clark's Facing Death series, is one of the few pieces of research conducted by sociologists about dying and death which is not related to cancer and palliative care. Like McNamara, Seymour links first-hand accounts from her own ethnographic research with a sociologically robust discussion of her data and their implications for practice. Her own background as an ITU nurse raised particular ethical and personal dilemmas for her during her research and it is to Seymour's credit that she shares these with the reader.

In some ways I felt that I was rather an outsider: a nurse but also a sociologist, looking in on myself acting a role within a very strange environment (p. 23).

It is most common for methodological discussions to be ‘hidden’ away from view in appendices, but Seymour ensures the ethics of conducting research in this arena are assigned ‘centre stage’. The reader is made to reflect on the process (and costs) of conducting this research. As I read subsequent chapters I was very much aware of the emotional and physical realities of conducting this research, and of the sometimes problematic nature of the notion of ‘informed consent’. In a particularly moving account, Seymour recounts one incident of gaining ‘informed consent’ from a family whose relative was in ITU. After being introduced as a ‘researcher from the university’ who wanted to talk to them about their experiences in ITU, she tells how the wife and son of the man, Jack, receiving care clearly welcomed the opportunity to talk to someone. However:

It is sometime later that Michael [son] turns to me – almost as an aside – and asks if I want to explain about the research I am doing, and it is only at this point that I am able to begin to explain my research intentions to them. Michael reads the information sheet about the study very carefully and asks several questions, Mary [wife] on the other hand, seems already to have decided that I can ‘do what you like dear’ . . . The problems of gaining ‘informed consent’ in such a situation are thrown into sharp focus (p. 27).

Seymour is to be commended for ensuring that all the ‘voices’ of the actors in these encounters at the end of life are heard throughout the book: doctors, nurses, relatives and even those of the usually muted dying person are apparent throughout. As one who teaches future medical practitioners, I would say that this is a book that should be read by anyone who will work within a hospital environment and who will encounter dying and death. Not only does this book illuminate the management of dying and death in ITU in a sensitive and challenging way, it also tells us much about the process of care and doctor/nurse interactions and professional/patient interaction.

A significant amount of work has been conducted on lay-carers’ retrospective accounts of the care received by the deceased person to gain some insight into the experiences of care at the end of life (e.g.Field et al. 1992, Seale and Cartwright 1994). It remains the case, however, that only a relatively small amount of research has been conducted with people who are dying themselves (e.g.Young and Cullen 1996, Exley 1999, Lawton 2000). This lack of research may be attributable to the fact that there is sometimes a reluctance to subject those who are dying, with all its likely associated physical symptoms and discomfort, to research (Field et al. 1995). There are many ethical considerations to take into account when asking those who are close to the end of life to engage with researchers and research, and it is imperative that people who are dying are given as much time and space as possible when considering whether to participate in any study. Of course, obtaining ‘informed consent’ and interviewing sentient individuals are relatively easy to negotiate. However, when approaching the end of life, in the last few days, weeks and even months, many people are likely to become increasingly unaware of their physical surroundings. As both Lawton (2000) and Seymour (2001) have vividly portrayed, ethnographic observational work with very ill and/or confused or unconscious people has its own ethical issues with regard to when, how, how often and from whom one should obtain ‘informed consent’ to participate in a study.

Outside formalised healthcare settings ethnographic studies have also been conducted within community settings to explore the management of dying and death at an individual and local level, in particular to consider how practices at the end of life have changed over time (e.g.Clark 1982, Adams 1993). Clark's work in particular provides an excellent ethnographic account of how, over time, the management of dying and death in Staithes, a small fishing village in North Yorkshire, ceased to be community centred and managed. It provides a particularly poignant reminder of how both dying and death have become increasingly professionalised, removed from the private to the public spheres of hospitals and funeral directors’ chapels of rest.

Sociology and bereavement

A significant amount of sociological work has been conducted on the experiences of bereavement (e.g.Hockey 1990, Littlewood 1992). Both Walter (1999) and Riches and Dawson (2000) have produced books based on empirical research and personal experiences that have made a significant contribution to understanding how grief is experienced and managed at both an individual and societal level. Both challenge the conventional wisdom that, given a period of time, those who have been bereaved need to ‘move on’ and/or ‘let go’ in order to get over their loss. Riches and Dawson have illustrated how the loss of a child has profound, long-lasting consequences for one's conceptualisation of self and other personal relations. For any of us who have been bereaved and resisted ‘moving on’, Walter demonstrates that maintaining meaningful bonds (and relationships) with those who have died should not be seen as ‘pathological’ grief, but rather as part of the reflexive construction of self-identity and relationships engaged with on a daily basis.

Two of the books in this review are concerned with bereavement and grief: Hockey, Katz and Small's edited book Grief, Mourning and Death Ritual and Currer's Responding to Grief: Dying, Bereavement and Social Care. Hockey et al.'s text is another book which is part of the Facing Death series, and it provides anyone interested in the area of bereavement with an excellent introduction to key concepts, as well as a wealth of data from a range of social scientists working in the area. The editors of this text are to be commended not only for their clear ‘sign-posting’ of this book and their explanations of terms and theories, but also the way in which they make linkages between concepts and understandings of bereavement and the nature of postmodern society. The introductory chapters to each section of the book provide the theoretical context for the chapters which follow. Indeed, if one were merely ‘dipping into’ this book, the chapters written by the editors are to be recommended. I particularly enjoyed Hockey's chapter, ‘Changing death rituals’, which provides a succinct review of a broad range of research depicting the uncertain world those who are bereaved face after their loss: the management and expression of emotion, finding the appropriate ritual and service of remembrance, the ‘right’ professional to use. The world of the bereaved is one of uncertainty and few ‘rules’, in which in late modernity the person is left to draw on traditional practices of grieving and memorial, combined with more idiosyncratic choices, to try to do the ‘right thing’. This is the kind of text one will refer back to time and time again, purely for the range of issues it covers: from Komaromy and Hockey's discussion of death in residential care, to Arnasan's and Anderson's chapters on bereavement work, to Howarth's discussion of ‘public grieving’, and Eyre's reflections on post-disaster ritual, and as such will be a useful reference for those working in the area of bereavement and memorial.

Currer's book Responding to Grief: Dying, Bereavement and Social Care provides the social care practitioner with an introduction to the notion of grief and grieving. Currer, who has a background in social work, provides a useful overview of some of the research literature in this area, drawing on relevant sociological work. As Currer states in her introductory chapter, however, this book does not seek to be a sociological account of grief, but rather one designed to assist practitioners involved in caring for people at this difficult time, and to highlight gaps in service knowledge and provision, and identify support and training needs from this. The book is easy to read and it will be useful to those social care practitioners whose work may bring them into contact with people who have been bereaved. For my own part, I found the use of personal examples of people's experiences of grief illuminating, but, having read the book, I am still rather uncertain about the sources of these accounts. There is no reference to data collection or analysis, and as such it is difficult to ascertain how exactly one should view the ‘vignettes’ used: are these anecdotal accounts collected during her work or are they part of a more systematic piece of research?

The neglect of spiritual care

One area of care at the end of life which sociologists have been notably absent in considering is that of spiritual care. To this extent, although not sociological, Cobb's book The Dying Soul: Spiritual Care at the End of Life (part of the Facing Death series) provides some thought-provoking material. Cobb, himself an ordained Anglican minister with experience of working within hospitals and hospices, draws on a range of literature to explore the problematic nature of providing spiritual care at the end of life. Cobb is to be admired for attempting to address this issue which he himself accepts is a term shrouded in confusion, ‘. . . a term from which can be inferred a vast range of meaning, some of which I allude to in this book and some of which the reader will bring to the text’ (p. 4). Spiritual care is ensconced as a fundamental part of the provision of palliative care, but Cobb illustrates how this central theme is so difficult to achieve in practice. Providing spiritual care seems to be one of the few areas of care without clearly delineated boundaries; the responsibility of all, and yet it is without doubt one of the most difficult ‘needs’ to either assess or meet. This is compounded by the fact we live in a multi-cultural society, including many different religions as well as the agnostic and the atheist, within which the notion of both death and spirituality is difficult to define and can be essentially individual in nature, scope and understanding. Cobb's call for a more reflexive awareness of spirituality is surely timely, as indeed is his repeated call to develop ways of evaluating and understanding spiritual care. For my own part, I was particularly pleased to read Cobb's concerns about how spiritual care can be provided to those dying of non-malignant terminal disease:

Where palliative care is extended towards a more generic form then it is probable that spiritual care will develop in new ways shaped by those living and dying with terminal disease other than cancer. . . . To what extent patients suffering with non-malignant fatal diseases are the ‘disadvantaged dying’ in terms of spiritual care has yet to be fully explored, but there is certainly a moral case to be made for some form of equivalent service to be available (p. 127).

This is a fascinating read and would be of interest to anyone concerned with palliative care generally, and the provision of spiritual care specifically.

Researching dying, death and bereavement

In terms of researching dying, death and bereavement, sociologists have had a significant impact on the kinds of approaches and methods used. Some of the sociological work conducted on the end of life has been quantitative (Kellehear 1990, Seale and Cartwright 1994), but more generally, it has been qualitative in nature, using interviews and/or observations. I would argue that it has been a particular achievement of sociologists that, in a medical field which has a dominant quantitative research paradigm, qualitative research has become increasingly used and valued by all. It is, however, important to recognise that conducting any research, but particularly in-depth qualitative research with those who are dying or bereaved, is emotionally draining for a researcher, and it is necessary to be aware of the impact it may have both personally and in terms of the research conducted. It is imperative, as Clark et al. (2000) have noted, that researchers are well prepared for working in this environment, and well supported both during the fieldwork and the analysis process. Conducting any social research can be a lonely process, but in areas of ‘sensitive’ research, attention must be paid to how to support the individual conducting the research. There may be an argument that one should only ever spend a limited amount of time involved in extremely emotionally-draining research, lest it has too great a personal impact, or equally problematic, that one becomes somehow ‘immune’ to the experiences of those confronting their own mortality and loss.

Field, Clark, Corner and Davis's edited collection Researching Palliative Care serves as an excellent example of how sociologists have impacted upon the research methods used within palliative care research, and is indicative of the multi-disciplinary nature of the research many sociologists are involved with in this area. Divided into three parts: Key methods for researching palliative care, Clinical research in palliative care and Needs assessment, audit and evaluation, this book brings together many previously published pieces relating to a broad spectrum of palliative care. It is a worthwhile acquisition for those coming to research in this field for the first time. From a personal point of view I particularly enjoyed the debates in Chapters 4 and 5, for and against placebo-controlled trials at the end of life; a particularly important and timely debate given the ever increasing number of Randomised Controlled Trials conducted at the end of life. As well as exploring quantitative approaches, the book also examines qualitative methodology and Clark's chapter considering the contribution such methods can make to palliative care research is much welcomed, and presented in a persuasive and accessible manner. Equally, given the increasingly stringent ethical requirements, Wilkie provides a useful aide memoire to the researcher poised to embark on research for the first time. Researching Palliative Care succeeds in its aim to be accessible to the increasing number of palliative care practitioners who are engaging in research as part of their work. To this extent I think it will be useful to postgraduate students and any healthcare professional conducting research in this area.

The future? The ‘problem’ of the ‘disadvantaged dying’

It is clear that the number of people working in the area of the sociology of dying, death and bereavement has increased dramatically in recent years. While research on bereavement has considered a broad spectrum of people bereaved for many different reasons, to date much of the work, particularly around the experiences and management of dying and death, has focused on the experiences of people who have cancer and on palliative care1. It remains the case that the over-whelming majority of people in receipt of specialist palliative care services in hospices are those who are dying of cancer. In terms of research it seems that ‘palliative care’ or ‘care of the dying’ often means care of the person with terminal cancer. Cancer is a particular kind of dying in that it often has a relatively clear trajectory. In addition, those diagnosed with cancer are likely to be younger, aware of their diagnosis and prognosis and have access to a sophisticated package of palliative care. In terms of research areas, those dying with cancer are relatively easy to identify. But, what of the experiences and care received by those dying with other long-term, non-malignant conditions – Alzheimers or end-stage cardio-respiratory disease – the so-called ‘disadvantaged dying’? Just as these people are less likely to receive palliative care, or even to be told of their terminal prognosis in any overt way, so too are they noticeably absent from sociological research.

The majority of deaths take place within a hospital environment, perhaps unpredicted and unplanned for, as a result of a final terminal exacerbation of a particular chronic disease. While people will continue to die in the hospital setting, it is likely, given demographic changes in the UK, increased social mobility and smaller family sizes, that many will face their own dying and death in a nursing or residential home. Such deaths may occur as a result of a sudden acute incident, but are more likely to be as a result of long, protracted illness, characterised by oscillating between periods of relative good health and periods of much worse health, sometimes requiring medical intervention and/or hospitalisation. It is only in relatively recent years that work has begun to be conducted within such settings (e.g.Katz and Peace 2003). More research in this area is needed allowing sociologists to explore the experiences of those in nursing and residential homes who may be dying in the community with far from optimum support.

Sociologists need to broaden the scope of our research and explore the experiences of the ‘disadvantaged dying’; those who are older and dying with other long-term degenerative, and ultimately fatal illnesses, those who are unlikely to be given the label of ‘terminally ill’ or to be aware of their prognosis. These people are unlikely to have access to the range of services afforded to those with a diagnosis of cancer and, in addition, are likely to be living with multiple co-morbidities which have a deleterious effect on health and quality of life. Research needs to focus on such people's experiences and whether the rhetoric in policy documents about expanding palliative care to all is either appropriate or wanted. Sociologists have challenged some of the fundamental principles of palliative care for people dying with cancer, the time has now come to consider those who may not only be seen as ‘disadvantaged’ in terms of their dying, but who, in too many ways, are also ‘invisible’.

Acknowledgement

I would like to thank Simon Duckworth, David Field and Carl May for their helpful comments on an earlier version of this paper.

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