Review article: the sociology of dying, death and bereavement

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. 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. 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 to death as a dying the of death away and (p. people being to to the end of their to the extent that they are no longer the of their own This book is and written in such a way as to be to as well as to a much it is a book which be by with an in health and Critical Moments – Death and Dying in Intensive in David Facing Death is one of the of research conducted by sociologists about dying and death which is not related to cancer and palliative McNamara, accounts from her own ethnographic research with a sociologically robust discussion of her and their for Her own as an and personal for her her research and it is to that she these with the In some I that I was an a but also a looking in on a within a very (p. It is most common for methodological to be away from in but the of research in this are The reader is made to on the (and of this research. As I I was very much aware of the and physical realities of this and of the of the notion of In a particularly moving one of from a was in being as a from the who to talk to them about their experiences in she how the and of the care the to talk to It is that to – as an – and if I to about the research I and it is only at this point that I able to begin to research to the about the study very and on the other to have that I can what The of in such a are into sharp focus (p. is to be for that all the of the in these at the end of life are the and those of the dying are As one who medical I would say that this is a book that be by who will work within a hospital and who will encounter dying and death. only does this book the management of dying and death in in a and challenging it also us much about the of care and and significant amount of work has been conducted on accounts of the care by the to some insight into the experiences of care at the end of life (e.g.Field et al. Seale and It remains the however, that only a relatively small amount of research has been conducted with people who are dying themselves and This lack of research may be attributable to the that there is a reluctance to those who are dying, with all its associated physical and to research et al. 1995). There are many to into account when those who are close to the end of life to engage with researchers and and it is that people who are dying are given as much time and space as possible when considering to in any and individuals are relatively to However, when the end of in the last and many people are to become increasingly of their physical As both (2000) and have ethnographic observational work with very ill or people has its own issues with regard to how often and from one to in a healthcare settings ethnographic studies have also been conducted within settings to explore the management of dying and death at an individual and level, in to how practices at the end of life have changed time work in provides an ethnographic account of the management of dying and death in a small in to be and It provides a particularly poignant of how both dying and death have become increasingly from the to the public of hospitals and of significant amount of sociological work has been conducted on the experiences of bereavement 1992). Both Walter and and (2000) have books based on empirical research and personal experiences that have made a significant to how grief is experienced and managed at both an individual and societal level. Both challenge the given a of those who have been bereaved to in to their and have how the of a has for of and other personal any of us who have been bereaved and Walter that meaningful (and with those who have not be as but as part of the of and with on a of the books in this review are with bereavement and Hockey, and edited book Grief, Mourning and Death and Responding to Grief: Dying, Bereavement and Social Care. Hockey et text is book which is part of the Facing Death and it provides in the area of bereavement with an to as well as a wealth of from a range of social scientists working in the area. The of this text are to be not only for their of this book and their of terms and but also the way in which they and understandings of bereavement and the of postmodern society. The to of the book the for the which Indeed, if one were this the written by the are to be I particularly death which provides a review of a broad range of research the uncertain world those who are bereaved face their the management and of the and of the professional to The world of the bereaved is one of and in which in the is to on traditional practices of grieving and with more to to do the This is the kind of text one will back to time and time for the range of issues it from and discussion of death in care, to and on bereavement to discussion of and on and as such will be a useful for those working in the area of bereavement and memorial. book Responding to Grief: Dying, Bereavement and Social Care provides the social care practitioner with an to the notion of grief and Currer, who has a in social provides a useful of some of the research literature in this on relevant sociological As in her however, this book does not to be a sociological account of but one to practitioners in for people at this difficult and to highlight in and and identify and from The book is to and it will be useful to those social care practitioners work may them into with people who have been own I the of personal examples of people's experiences of grief having the I still uncertain about the of these There is no to collection or and as such it is difficult to how one the are these accounts her work or are they part of a more of area of care at the end of life which sociologists have been notably in considering is that of this not book The Dying Soul: Spiritual Care at the End of of the Facing Death provides some thought-provoking Cobb, an with of working within hospitals and hospices, on a range of literature to explore the of providing care at the end of is to be for to this which accepts is a in a from which can be a range of some of which I to in this book and some of which the reader will to the (p. Spiritual care is as a part of the provision of palliative care, but how this is so difficult to in care to be one of the of care the of and it is one of the most difficult to or This is by the we live in a society, including many different as well as the and the within which the notion of both death and is difficult to and can be individual in and for a more of is as is to of and own I was particularly to about how care can be provided to those dying of terminal Where palliative care is towards a more it is that care will in by those living and dying with terminal other what extent suffering with are the in terms of care has to be but there is a case to be made for some of to be (p. This is a and would be of to with palliative care and the provision of care In terms of researching dying, death and bereavement, sociologists have had a significant impact on the of and methods of the sociological work conducted on the end of life has been Seale and but more it has been in I would that it has been a of sociologists in a medical field which has a research research has become increasingly used and by It is, however, important to that any but particularly research with those who are dying or is for a and it is to be aware of the impact it may have both and in terms of the research conducted. It is as Clark et al. (2000) have that researchers are well for working in this and well both the and the any social research can be a but in of be to how to the individual the research. There may be an argument that one only a amount of time in it has too a personal or that one to the experiences of those their own and Field, Clark, and edited collection Researching Palliative Care serves as an example of how sociologists have the research methods used within palliative care and is indicative of the multi-disciplinary of the research many sociologists are with in this area. into three methods for researching palliative care, research in palliative care and and this book many published to a broad of palliative It is a for those to research in this field for the first a personal point of I particularly the debates in and for and at the end of a particularly important and debate given the number of conducted at the end of As well as the book also and chapter considering the such methods can to palliative care research is much and presented in a and accessible given the increasingly provides a useful to the to on research for the first Researching Palliative Care in its aim to be accessible to the number of palliative care practitioners who are in research as part of their this extent I think it will be useful to and any healthcare professional research in this area. It is that the number of people working in the area of the sociology of dying, death and bereavement has increased in recent years. research on bereavement has a broad of people bereaved for many different to much of the particularly the experiences and management of dying and death, has on the experiences of people who have cancer and on palliative are Field Seale and It remains the case that the majority of people in of specialist palliative care services in hospices are those who are dying of In terms of research it that or of the often means care of the with terminal is a kind of dying in that it often has a relatively In addition, those diagnosed with cancer are to be aware of their and and have to a of palliative In terms of research those dying with cancer are relatively to But, what of the experiences and care by those dying with other – or – the as these people are less to palliative care, or to be of their terminal in any so too are they from sociological research. The majority of deaths within a hospital and as a of a final terminal of a people will to die in the hospital it is given in the increased social and that many will face their own dying and death in a or Such deaths may as a of a acute but are more to be as a of by of good health and of much health, medical It is only in relatively recent that work has to be conducted within such settings and More research in this area is sociologists to explore the experiences of those in and homes who may be dying in the with far from to the of our research and explore the experiences of the those who are older and dying with other long-term and those who are to be given the of or to be aware of their people are to have to the range of services to those with a of cancer in addition, are to be living with which have a on health and of to focus on such people's experiences and the in about palliative care to all is or have challenged some of the of palliative care for people dying with the time has now to those who may not only be as in terms of their dying, but in too many ways, are also I would to David Field and May for their on an of this