Sociology of Health & Illness
© John Wiley & Sons Ltd and the Foundation for the Sociology of Health & Illness
Edited By: Gareth Williams (Managing Editor), Davina Allen, Eva Elliott, David Hughes, Joanna Latimer and Ian Rees Jones
Impact Factor: 2.014
ISI Journal Citation Reports © Ranking: 2013: 8/37 (Social Sciences Biomedical); 10/138 (Sociology)
Online ISSN: 1467-9566
Virtual Special Issue on death, dying and bereavement
Edited by Clive Seale
Death represents the starkest reminder of division between the biological life of the body and its social presence. Humans, uniquely, live with awareness of their own finitude and ill health is a reminder of our ultimate fragility. More directly, experience of the deaths of others, and the provision of care to people as they approach death or respond to loss, have the potential to confront us with knowledge of our own mortality. Yet our capacities to make meaning through social organisation provide us with the resources to orient towards life. Sociologists in the pages of Sociology of Health and Illness have, over the years, contributed to an understanding of these things. The purpose of this Virtual Special Issue is to guide readers to work that has appeared in the journal on this theme. Readers of this editorial should also note that the journal has also published Catherine Exley’s (2004) review of some major books by sociologists working in this field, assessing their contribution to this field.
Suicide and bereavement
The death of one’s child by suicide represents the ultimate threat to the capacity to make meaning. Not only does suicide present the bereaved person with the harshest of answers to the question ‘what is the meaning of our lives?’, but in modern times the deaths of children before that of their parents has become an affront to the expected scheme of things. Christabel Owens and her colleagues (2008) present the results of qualitative interviews with parents of young men who died in these circumstances. They show the different ways in which their son’s action is explained, stressing the moral accountability of persons involved, including their own. In keeping with the fine tradition of qualitative analysis in the journal, involving recognition of the socially constructed nature of interview accounts, these authors provide a persuasive case for perceiving the interview itself as an opportunity for narrative reconstruction. This reconstruction is a ‘survival tool’ because it enables the parents to make sense of the past and face the future.
This article is the latest in a series of pieces that have appeared in the journal concerning suicide and bereavement. Marcus Redley (2003), for example, exemplifies the particular contribution of a sociological perspective centred on meaning-making. He points out that the public health literature on self-harm and attempted suicide largely seeks to establish ‘risk factors’ so that such behaviour can be prevented. He shows, once again through qualitative interviews, how people who had attempted suicide sought to make sense of their actions, in this case by minimising their own agency and constituting life as being in a perpetual present. This allows the speaker to maintain a distance from the contemplation of past despair. More broadly, Joanne Coyle and Doreen MacWhannell (2002) in an account of suicide stories in newspapers, show how these construct this act to be explicable as the product of deviancy, dysfunction or moral weakness. Clearly this enables newspaper readers to maintain their own distance from the subjective states that lead people towards death.
The search for meaning amongst the bereaved is also the theme of two articles about losses experienced by men and women due to pregnancy loss. Both indicate sources of particular difficulties in this kind of loss. Bernadette McCreight (2004) focuses on the responses of men, arguing that existing cultural scripts for men’s grief do not provide recognition of the actual life-world experiences of men bereaved in this way. Julia Frost and colleagues (2007) explore the responses of women to first trimester miscarriage, again identifying a lack of clear cultural scripts for this event, describing a variety of ways in which women nevertheless try to come to terms with the experience.
Clive Seale’s (1995) article continues the theme of threats to socially organised ways of making death meaningful, by considering responses of the bereaved to situations where people die alone. Drawing on interviews, he notes the ways in which speakers sought to construct a sense of these deaths as temporary deviations from an otherwise orderly world, and their own actions to be morally defensible. In these respects, these accounts share much with the suicide narratives described above. Also concerning bereavement, Gill Haddow (2005) analyses responses to organ donation requests amongst family members, showing how this forced encounter with the issue of what death really ‘is’ prompts reflection on the fundamental human question ‘Who am I?’ The theme of when death can be considered to have occurred was an issue for Haddow’s respondents, and this is also a theme of an article by Helen Sweeting and Mary Gilhooley (1997). These authors use the concepts of anticipatory grief and social death to explore the phenomenon of a death that may occur when a person is still biologically alive, drawing on carers’ accounts of elderly people with dementia. Thus conventional accounts of bereavement occurring only after a loss are rendered problematic.
Media and medical constructions of death
Popular culture is a resource on which many people draw on for cultural scripts in making sense of death. As well as the study of newspapers by Coyle and MacWhannell (2002) reviewed earlier, the journal has published contributions to an understanding of this by Alan Radley (1999) and Tony Walter (2004). The first of these examines the increasingly prevalent phenomenon of first hand accounts of life-threatening or terminal illness that nowadays appear as books or in print and broadcast media, arguing that these may act as myths providing a sense of coherence in the face of suffering. The second reports a study of visitors’ responses to Gunther von Hagens’ ‘Body Worlds’ exhibition, which displays real but ‘plastinated’ and dissected human bodies and body parts. This was followed in 2006 by Dirk von Lehm who videotaped visitors viewing the exhibits. Both focus on the ways on which the exhibits, and visitors’ responses to these, involve engagement with a complex ‘debate’ about the reality of death and its aesthetic mediation in the exhibition. These articles stand out as different from many others in this collection since they draw on data other than qualitative interviews, including popular media documents, videotaped observations, and comments written in visitors’ books.
The mass media and other outlets of popular culture provide one set of socially organised means to explain death. But this social organisation is not confined to popular culture and sociologists in the journal have made particularly strong contributions towards understanding the role of medical knowledge and the medico-legal system in making death explainable through the provision of cultural scripts. Lindsay Prior’s (1985) account of the processing of mortality statistics is a case in point. In a detailed investigation of what happens at each stage in the creation, collection and coding of causes of death, Prior shows that ‘policing the dead’ is a more accurate description of their purpose than the accurate description of disease. In a similar vein, David Armstrong’s (1986) article describes the ‘invention’ of infant mortality through the production of statistical knowledge, which constructed this as a medical problem and offered a variety of explanatory frameworks during the course of the 20th century. This early interest in the social construction of knowledge about mortality led to several other pieces drawing on the idea of medico-legal activities constructing the object with which they deal. Examples are Judith Green’s (1992) paper on the construction of fatal accidents in UK coroner’s courts and Stefan Timmermans’ (2002) analysis of challenges to the professional jurisdiction of medical examiners in the USA who investigate and certify suspicious deaths. Stefan Timmermans (2005) has built on this work to provide an account of the continuing capacity of medical professionals to act as ‘death brokers’ who give socially sanctioned meaning to the end of life.
Caring for people approaching death
a. Hospice and palliative care
A considerable body of work which focuses on the process of care for people approaching death, in hospices and elsewhere, has appeared in the journal, starting with an account by Peter Hoad (1991) of the contribution made by volunteers to the ethos of independent hospices. Most recently, Alex Broom and Philip Tovey (2007) have shown how complementary and alternative medicine is provided to patients in cancer care and hospice settings. Both of these show hospices to be sites of particular interest to sociologists interested in professional dominance and its modification by the involvement of non-orthodox practitioners and ‘lay’ members of the community.
Veronica James’ (1992) account of carework in a hospice has perhaps been the most influential of these studies of hospice care. Drawing on an observational study in a hospice, James compares nurses’ work in this setting with analyses of women’s domestic labour, continuing a tradition within the sociology of nursing which seeks to describe the nature of nursing professionalism. Once again, the hospice is a particularly interesting site for witnessing modifications to interprofessional relations. The component of care that involves emotional labour is given particular attention by James and its implications for the hospice philosophy of ‘total care’ is brought out. Less widely read, but deserving of more attention, is Maura Hunt’s (1991) study of home terminal care by specialist nurses. Hunt shows the importance of talk in the work of these nurses and, drawing on an ethnomethodological form of constructionism, Hunt demonstrates how the family membership rights and duties of particular individuals found in the home are constituted.
These studies of terminal care were supplemented in 1995 by an Australian study by Beverley McNamara and colleagues. This study more directly addresses the theme of how social organisation, in this case care work, makes sense of mortality. In particular these authors focus on nurses’ attempts to maintain an image of a ‘good’ death, and to help their clients attain this. This involves acceptance of dying and preparation for it with the assistance of families and friends, supported by care workers. Camilla Zimmerman’s (2007) account of the way in which palliative care literature promotes the idea that ‘death denial’ is an obstacle to good palliative care shows how this is implicated in a similar maintenance of an idealised way of dying, which then becomes the ‘correct way’. The theme of the ‘good death’, although she does not use this term, may also be said to characterise Julia Lawton’s (1998) celebrated account of care in a hospice where she acted as participant observer. This study is distinguished by the prominence it gives to accounts of bodily processes involved in dying from cancer, showing how deteriorating bodies become leaky and ‘unbounded’ so that the hospice represents a place of sequestration. This sequestration serves to hide such bodies away, so that they do not threaten ideals of bounded, sanitised and hygienic bodies that are held to in general society in late modernity.
Subsequently, and in keeping with the general rise of interest in ethnicity in the journal, studies have appeared which explore ethnic and racial issues in relation to hospice and palliative care. Yasmin Gunaratnam ( 2001) describes accounts produced by staff of how they respond to racism in service users. Jane Seymour and colleagues (2007) provide a comparative account of white and Chinese older people in the UK, showing how they differ in their perceptions of the meaning of end-of-life care settings. White respondents responded positively to the kind of hospice ideals about the ‘good death’ described by McNamara and colleagues (1995) and often implemented by providing a death at home, supported by the kind of care described by Hunt (1991). But these ideals had little resonance for Chinese respondents, who indicated a preference for the medicalised environment of the hospital, where death could occur without placing undue burdens on family members or contaminating the home with a death. Exploring these different ways of making sense of end-of-life care is consistent with the general sociological theme of understanding human social organisation and meaning-making in the face of death.
b. Other care settings
Anssi Peräkylä’s (1989) account of care of dying patients in Finnish hospital settings arises from an ethnomethodologically informed ethnographic study, showing how staff in these settings switch between four different frames – practical, medical, lay and psychological – in their dealings with patients. Peräkylä focuses on the psychological frame, used to deal with patient behaviour that threatens the order of the ward settings because it cannot be explained by recourse to the other frames, and also used to project an image of the particular expertise possessed by staff working with such patients. Stefan Timmermans (1998) provides an account of resuscitation technology in the emergency departments of hospitals in the USA, showing how this shapes sudden death in these settings and addressing the issue of the dignity of such deaths, as understood by relatives and friends.
Awareness and control of dying
Another early contribution by Timmermans (1994) in the journal to an understanding of death and dying is his article developing the theory of awareness contexts, first formulated in 1965 by Glaser and Strauss in the work that led to the ‘discovery’ of grounded theory. Both Timmermans and Mamo (1999) in another article on awareness contexts, each drawing on the method of introspectve ethnography, argue a place for including the emotional dimension of people’s experience in this theory. This leads Timmermans to suggest further subdivisions of the suspended awareness context, in recognition of the emotional work that this entails.
This focus on awareness returns us to the theme with which this editorial began: the consequences of knowledge of our own mortality for human social organisation. This, as many of these articles have shown, leads to a myriad of different ways in which we organise ourselves for death and its societal management, and provide ways for it to be constructed as meaningful at the level of personal psychology. The peculiarly acute awareness of death is enhanced in late modernity by the provision of medical information about prognosis. Our response to this is informed by a predominantly individualistic way of managing the self in late modern conditions. This becomes evident when end-of-life decision making is considered, as has been done in the four final articles reviewed for this Virtual Special issue.
Beth Jennings (2006) shows how decision making about treatment in three US intensive care units has become informed by a computerised decision-support tool that predicts the probability of death. She describes the tensions involved in the use of this tool by clinicians to, on the one hand, satisfy the funders of health care that resources are being used wisely, and on the other hand to fulfil moral obligations to patients. This focus on deciding when to make medical interventions with people approaching death is also explored in an article by Janet Shim and colleagues (2006). Using cardiac care as a case study, these authors show how the logic and language of risk avoidance is used to inform a preference for intervention that forgoes consideration of the ultimate purpose of prolonging life by these means.
The unnecessary or futile prolongation of life is, of course, a matter with which many individuals concerned with the practice and legalisation of euthanasia are concerned. Rory Williams (1989) has provided a discussion of trends in public opinion concerning both the desirability of awareness of dying when terminally ill, and the desirability of controlling the manner in which life is ended through euthanasia. He compares British with American public opinion, identifying paradoxical trends that reflect broader cultural factors in each country. And Heleen Weyers (2006) provides an account of the situation in the Netherlands where euthanasia has been allowable under law for some time. The puzzle she sets herself is to explain why the Dutch adopted a permissive approach to this practice which is otherwise largely forbidden under the jurisdictions of other countries. Her explanation rests on a sociological account of the bioethical system as a means of social control.
In this body of work sociologists in the pages of Sociology of Health and Illness have provided us with a uniquely sociological account of the phenomenon of death, which is otherwise predominantly explained by recourse to biomedical or psychological perspectives. This review provides a guide to these contributions that is likely to prove useful to researchers, teachers and students wanting to understand the sociological perspective on these matters. It is hoped, too, that this review may prompt new submissions to the journal that develop this important field in new ways.