Death, Dying and Loss in the 21st Century

DEATH, DYING AND LOSS IN THE 21ST CENTURY Guest edited by

Allan Kellehear Social and Policy Sciences University of Bath

Editor-in-Chief

Fran Collyer Sociology and Social Policy University of Sydney

ISBN 978-0-9757422-9-7

Sydney • Amsterdam • Palo Alto

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Death dying and loss in the 21st century Bibliography. ISBN 978-0-9757422-9-7 1. Dying 2. Death 3. Bereavement 4. Sociology 5. Mourning 6. Grief 7. Euthanasia 8. 21st Century I. Kellehear, A. (ed.) Series: Health Sociology Review; December 2007, 16/5 © 2007, eContent Management Pty Ltd

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Volume 16, Issue 5, December 2007

HEALTH SOCIOLOGY REVIEW International Journal of Health Sociology: Policy, Promotion, Equity and Practice ISSN 1446-1242

CONTENTS

VOLUME 16 • ISSUE 5 • DECEMBER 2007 DEATH, DYING AND LOSS IN THE 21ST CENTURY

372

Editorial – Allan Kellehear

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The mismanagement of dying – Beverley McNamara and Lorna Rosenwax

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Death and the body beautiful: Aesthetics and embodiment in press portrayals of requested death in Australia on the edge of the 21st century – Fran McInerney

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Avoiding death: The ultimate challenge in the provision of contemporary healthcare? – Kay Price and Julianne Cheek

405

Practical bereavement – Philip Bachelor

415

Death and mourning in technologically mediated culture Margaret Gibson

425

Whatever happened to social class? An examination of the neglect of working class cultures in the sociology of death – Glennys Howarth

436

Closing in on death? Reflections on research and researchers in the field of death and dying – Jenny Hockey

447

BOOK REVIEWS Evelyn Elsaesser-Valarino Talking with Angel about illness, death and survival – Dorothy Broom

448

Elizabeth E Wheatley Bodies at risk: An ethnography of heart disease – Jeanne Daly

450

Sheila McLean and Laura Williamson Xenotransplantation: Law and ethics – Craig Fry

STOP PRESS: Listed in Thompson Scientific Social Sciences Citation Index from Volume 16/1 (2007)

Journal of the Health Section of The Australian Sociological Association Indexed/abstracted/aggregated in: Thomson Scientific Social Sciences Citation Index (SSCI), PsycINFO, Scopus, CINAHL, IBSS, EBSCOhost; Cengage, ProQuest, EBSCO Publishing, Meditext, Informit, Atypon and APAIS; it is listed in Cabell’s and Ulrich’s Periodicals Directories and with DEST as a refereed journal. Special issues also appear as ebooks on eBooks Corporation, eBrary, NetiLibrary, Questia and MyiLibrary. www.healthsociologyreview.com © 2007, eContent Management Pty Ltd

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EDITORIAL Allan Kellehear Professor of Sociology Centre for Death and Society Department of Social and Policy Sciences University of Bath, United Kingdom

I

am very pleased to introduce HSR readers to this special issue on death and dying. Seven excellent papers appear in this issue examining a range of contemporary issues and questions from bereavement and the (mis)management of dying to the role of the body or death denial in policy formulation or media representation. I am especially pleased to see in this issue a preponderance of Australian contributors. Like many other countries, the field of death and dying began by being dominated by medical and psychological perspectives in these topic areas. Now, social approaches to theory development, criticism or empirical studies are establishing a significant place alongside these other views. This is clearly happening in Australia now no less than in other countries that have longer sociological traditions in the study of death, most notably the United Kingdom and the USA. It is also worth noting that although hospice and palliative care has experienced rapid rise and development in the last 30 years the interest in the study of death and dying from these colleagues remain modest. It remains true that the most significant number of empirical studies of death and dying as well as theoretical contributions continue to come from the social sciences and not, rather disappointingly, from palliative care researchers. Palliative care remains focussed on a health services agenda of research that continually promotes a concern with the body, its symptoms and management, and the problem of service design and delivery. Studies of carers remain greater than studies of people at the very centre of the service: the dying and bereaved.

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In sociology, research questions about death and dying have been closely identified with health – as they still are – but the current range of articles in this issue does remind readers, who may usually research outside these topics, that sociological concerns about death are inclusive of questions and theories beyond health. The current articles demonstrate a concern for social movements, stratification, media and technology, policymaking, and the sociology of the body, religion and culture. Death and dying are linked to many concerns within the world of health and medicine but they also explore pressing questions and concerns in epistemology, the sociology of knowledge, or the politics of identity. The history of political power and authority in Late Modernity, the politics of embodiment, or even the career politics of studying death and dying as an academic, are all discussed in this issue. There is much to do in this still very new field of the social sciences. There is a pressing need for more studies of death, dying and loss in poverty, remembering that demographically speaking, most death and dying occurs in developing countries and not our own affluent, cancer-obsessed nations. More studies are needed on the impact of total institutions on aging and dying, particularly in nursing homes. New forms of the medicalisation of death, such as the rise of brain death criteria and politics of organ donation, require greater social science curiosity and scrutiny. More studies of dying and bereavement, from the point of view of the experiencer rather than their carers, remain an important though challenging need if our understanding about human mortality is to free itself from the current restricted epistemology and views of professionals. There is much to do in this exciting, underresearched, but vitally important field. After all, as theorists from Freud and Malinowski to Bauman and Elias have argued, an understanding of how we die is often the sharpest reflection of our current politics of life. Volume 16, Issue 5, December 2007

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The mismanagement of dying ABSTRACT KEY WORDS

Dying, cancer, awareness of death, good death, end of life, sociology

This paper reports on a recent population-based study of the last months of life of 1071 people in Western Australia who died from a chronic condition. Data was collected from death certificates and telephone interviews of primary carers who acted as proxies providing second hand accounts of the severity of the deceased person’s symptoms and sources of concerns, their awareness and acceptance of dying, and experiences of the health care system. We present descriptive statistics and quotes supporting our premise that dying in Australia is largely mismanaged. We base our assertions on three themes: dying with multiple conditions and symptoms; awareness and acceptance of dying; and support during the dying process. Each theme illustrates the difficulty of self-managing complex conditions, the failure of the health care system to acknowledge this complexity, and the need for a more radical and social approach to the management of dying. Received 12 August 2007 Accepted 10 October 2007

Beverley McNamara Anthropology and Sociology The University of Western Australia Australia

Lorna Rosenwax School of Occupational Therapy Curtin University of Technology Australia

Introduction

D

ying today is dreadfully mismanaged. People live longer and certainly most of those in contemporary Western societies have come to expect an increased quality of life. Yet despite improved public health and claims of medical progress, the majority of people face a period of prolonged dying associated with complex and often multiple conditions requiring systematic, cohesive and empathetic social and medical care (McNamara 2001). Although we may be able to find examples of ‘good death’ scenarios, these are the stories of the lucky few who have, for one reason or another, access to the social and material resources that allow for Volume 16, Issue 5, December 2007

the careful and informed management of the dying process. Care of the dying has not improved in any large scale way (Fordham and Dowrick 1999), and we now live in a time of the ‘shameful’ death with people devoid of the support they need to face the trials associated with dying, often facing social isolation and poverty (Kellehear 2007:248). In seeking to clarify the level of mismanagement evident in end-of-life issues in contemporary Western societies, we may well ask what would a well-managed death look like and if it is indeed achievable. Management in matters related to health has in recent times focussed on management of the self, particularly in relation to personal responsibility for health (Hughes 2004) and ‘new’ regimes of public health (Petersen and Lupton 1996). There has also been attention given to managing one’s own chronic condition, although this direction is more often driven by cost containment than by strategies that allow people to integrate their illness into their daily lives in meaningful ways (Walker 2003). These perspectives value an autonomous agent or active citizen who is free to take control of his or her own affairs and make informed choices, HEALTH SOCIOLOGY REVIEW

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or in the very least delegate that control to another more capable person. The model of active decision-making and appropriate delegation informs current thinking about advanced directives for end-of-life care (Jordens et al 2005; Seymour et al 2004). Taken to its extreme, self-managed dying might push the ethical and legal boundaries, allowing, for example, the practice of euthanasia or the use of heroin to alleviate pain in the terminal phase of life. Putting aside ethico-legal boundaries, most people approaching the endof-life face challenge enough in negotiating the complex medical system. As Kellehear (2007:149) aptly notes, the irony of a wellmanaged death is that one needs reasonable health in order to achieve it. As much as a healthy life followed by a sudden deterioration and death in very old age is an ideal valued by many, the reality is that a large majority of people die after a long period of chronic illness. In Australia, for example, the ‘prolonged’, ‘slow’ or ‘lingering’ death is now far more common with at least 55 per cent of people dying of conditions associated with complex symptoms and gradual deterioration (Rosenwax et al 2005). This conservative estimate was based on a study using mortality and morbidity data that gives a broad brushstroke and does not capture the full extent and social cost of the last months and sometimes years before death. Dying is not a fixed point in time, and for all but the minority who die suddenly, the process will most likely bring them into contact with doctors and the hospital system. For some time it has been common practice for doctors to inform cancer patients about their prognosis (Good et al 1990; Thomsen et al 1993) though this does not seem to be the case for other conditions, partially due to the difficulty of predicting the clinical trajectories of complex diseases (Field 1996). Palliative care is seen to have improved the communication between doctors and patients (Field 1996) though Zimmermann (2007) suggests that palliative care tends to treat death denial as an obstacle, thus creating the perception that the correct way to die must include open communication. Palliative care is not a panacea.

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Health care professionals believe patients are often referred too late to the services, though patients and families do not always agree (Kapo et al 2005). Even with access to palliative care there is no guarantee that dying people and their families will be well informed, in a position to negotiate the complex pathway through the medical system, and able to engage the appropriate supports they will need in the last weeks and months of life. Palliative care professionals have attempted to play a role in coordinating the management of dying (Barbato 2002; Clark and Seymour 1999), but all too often they become just one of the many sub-specialities that are added into the health service mix needing negotiation by seriously ill people and their distraught families. The philosophy of palliative care has also stimulated broad discussion of what constitutes a good death (Sandman 2005), taking simple management of death to a higher level of idealism. Beyond the common themes of dignity and being at peace (Beckstrand et al 2006), awareness of dying and self determination, or self control, feature consistently in the good death debate (Walters 2004; Logue 1994). Patient autonomy and consumer choice fit with this broad philosophical thrust (McNamara 2004), yet clearly there is a disjuncture between the philosophy and practice of palliative care (Clark and Seymour 1999), and many people are simply too sick to take serious control of the management of their own dying (Lawton 2000). The ethical underpinnings of the good death philosophy do not take us very far in trying to understand the day to day realities of dying. It is only through a thorough understanding of this often lengthy process that we can formulate better and more socially oriented approaches to the management of dying in the 21st Century. When we turn to the current literature for direction, much of it is abstract and cast in philosophical or thanatological terms, medically oriented or anecdotally framed from the perspective of the individual. The few sociological studies that give a broad ranging view of what is happening in the last months of life are now dated (Seale and Cartwright 1994; Kellehear 1990) and Volume 16, Issue 5, December 2007

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we have had little recent empirical authority to claim that the experience of dying is marred by undue suffering, physical pain, lack of good medical support and lack of personal control. Our research, described below, provides evidence to illustrate the disgraceful manner in which many Australians die. Dying for a large number of Australians today is painful, undignified and medicalised. By far the most worrying indication of the neglect suffered by dying people and their families is that they have come to expect little in the way of support. While awareness of dying in chronically ill people has increased they are, perhaps more than ever, left alone to ‘manage’ as best they can.

Methods To gain detailed descriptive data about the last months of life, we gathered information from death certificates and conducted telephone surveys with 1,071 primary carers of people who died between August 2005 and June 2006. The primary carers acted as proxies providing second hand accounts of the severity of the deceased person’s symptoms and sources of concerns, their awareness and acceptance of dying and the kinds of experiences they had in the health care system, including their knowledge and use of palliative care. To minimise the potential effect of bereavement while also minimising the effect of recall bias, the study’s interviews of proxies occurred four to six months after the family member died. Proxies have been considered valid representatives for deceased people in similar large scale studies in the United Kingdom (Addington-Hall et al 1998; Hinton 1996; Seale and Cartwright 1984). The deceased people, our study population, were identified through death registrations in Western Australia, with access to this confidential data approved by the Registrar-General, Registry of Births, Deaths and Marriages. Information from death certificates was used to determine date of death, age at death, cause(s) of death, residential address, date of birth, gender and marital status. Only those 18 years or over and with a last recorded address within Western Australia were eligible for the study. We had Volume 16, Issue 5, December 2007

planned to include people who had lived in residential aged care facilities but had difficulty in identifying a primary carer to act as a proxy. Many of the residential aged care staff argued that they were the primary carers or that there was no primary carer or family who cared for, or about, the aged care resident. With the assistance of clinicians and the epidemiological literature (McNamara et al 2006; Addington-Hall and Higginson 2001), we chose primary diagnoses, as recorded on the Death Certificate, that were chronic in nature and that rarely resulted in sudden death; hence there was potentially a period of time between diagnosis and death during which preparation for death, management of symptoms and access to appropriate health and social services could have occurred. The conditions listed included cancer, chronic heart failure, chronic renal failure, chronic liver failure, chronic obstructive pulmonary disease, Alzheimer disease, Parkinson disease, motor neurone disease/ amyotrophic lateral sclerosis, or multi-organ failure. In many cases more than one condition was listed as a contributing cause of death. The identification of the study population was dependent on the accuracy of the data from the death certificates and this is not always complete. There is evidence that some conditions, such as Alzheimer disease (Hoyert 1996) and chronic obstructive pulmonary disease (Mannino et al 1997), may be underreported, indicating that the complexity of conditions people suffer from before they die may be even greater than what we have been able to show in this study. Of our study population, 63 per cent of people who died were male. The mean age at death was 72.2 years (SD=12.4) ranging from 20 years to 102 years. The greatest proportion of the group was married (82%) and had been living in the metropolitan area (76%) as opposed to outer metropolitan or rural/remote areas of Western Australia. Almost 70 per cent of the study population died of cancer as the primary diagnosis (Table 1), reflecting broader mortality trends in Western Australia (Rosenwax and McNamara 2006) and Australia (Australian

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Table 1:

Demographic characteristics of deceased persons

Variable

All persons (N=1071) (%)

Number of deceased Mean age at death Marital status

Males

63.2 (n=677)

Females

36.8 (n=394)

Male

72.9 years (SD=11.7)

Female

70.8 years (SD=13.5)

Never married

2.6

Married

Primary diagnosis

Place of residence

Divorced

2.5

Widowed

11.5

Single

0.9

Other

0.1

Cancer

69.7

Chronic heart failure

13.0

Chronic renal failure

5.0

Chronic obstructive pulmonary disease

4.6

Alzheimer disease

2.7

Chronic liver failure

2.1

Parkinson’s disease

1.2

Motor neurone disease

0.9

Multi-organ failure

0.8

Metropolitan

75.8

Rural

24.2

Bureau of Statistics 2005). As the study was restricted to Western Australia, not all of the results may be generalisable to other states of Australia or other countries. The kinds of symptoms and concerns faced by chronically and terminally ill people and their family carers may have a common currency but use of, and barriers faced in accessing health care, may vary between states and countries. The primary carers, who acted as proxies for our study population of deceased people, were primarily female (69%) and aged between 61 and 70 years. The relationship of the primary carer to the deceased was a spouse or partner (79%), child (16%), sibling (2%), parent (1%) or other. The study was approved by the appropriate ethics authorities and only experienced

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interviewers who had previously dealt with sensitive health related issues were used to collect the data using the Computer Assisted Telephone Interviewing facility (Survey Craft CATI system). Specialist bereavement counselling was offered to carers if the telephone interviews were upsetting. Interviewers were able to enter responses to closed-ended questions automatically and scribe open-ended comments made by the primary carers during the interview. The telephone interview method made it difficult to trace all of 1,487 eligible in sample, but of these only 320 primary carers chose not to participate making the response rate approximately 75 per cent. The interviews lasted from between eight and 105 minutes, averaging 26 minutes. Volume 16, Issue 5, December 2007

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Descriptive statistics were used to provide socio-demographic details of the deceased people and their primary carers, the frequency of various physical symptoms, psychological symptoms, social/spiritual concer ns, knowledge of impending death and the frequency and proportion of the types of health services used by the terminally ill in the last months of life.

Findings Our findings have been organised into four main themes, with statistical information and quotes from primary carers that support our premise that dying in the twenty first century in Australia is mismanaged. The themes focus upon dying with multiple conditions and multiple symptoms; awareness and acceptance of dying; and support during the dying process. Each of these themes has been chosen to illustrate the difficulty of self managing complex conditions, the failure of the health care system to acknowledge this complexity, and the need for a more radical and social approach to the management of dying.

Dying with multiple conditions and multiple symptoms Just as living in the late modern or cosmopolitan age has become more complex (Giddens 1991), so too has dying (Kellehear 2007). In our study we found that the complexity of dying is aggravated by the multiplicity of health problems that our study group suffered from, with many of these problems contributing directly to the cause of their deaths. These findings align with an earlier study into all deaths over a 2.5 year period in Wester n Australia (n=26,882) (Rosenwax and McNamara 2006) that found that there were up to 14 causes or contributing causes of death with only 22 per cent of those who had died having only one cause of death listed on the death certificate. Having a multitude of medical conditions can greatly complicate not just the management of dying but also the management of living in the years before death (e.g. Mr J Smith died of: ‘Acute myocardial infarction (minutes)’ with antecedent causes of death listed as ‘Congestive cardiac failure (years), poorly controlled type II diabetes (years) Volume 16, Issue 5, December 2007

and Chronic renal failure (years)). It is insufficient to reduce Mr J Smith’s experience of dying to the moment in which he suffered a heart attack, when clearly he had a myriad of physical complaints and no doubt associated worries, concerns and detailed contact with the health care system in the long lead up to his death. Not only are people dying with a range of medical conditions, but they are also suffering from a range of distressing symptoms in the months before death including pain, breathlessness and fatigue. It must be said that one of the greatest fears around death is to die in pain. Unfortunately even with advances in pharmaceuticals and claims from palliative care professionals that pain can be relieved (World Health Organisation 1990) a large proportion of people (54%) had ‘pain’ that was perceived by the primary carer to be either ‘quite a problem’ or ‘a very big problem’ in the months leading to death. During one of the interviews a carer was very distressed, saying: I am not blaming anyone for my wife’s death but it was the agony she went through that wasn’t necessary.

Likewise, breathlessness was listed as a ‘quite a problem’ or ‘a very big problem’ for almost half of our study population in the months before death. High proportions of people in their last months of life also suffered from fatigue (88%), depression (50%), anxiety (56%), anger (33%) and fear (34%) prompting over two-thirds of primary carers to agree that the deceased person suffered before he or she died (69%). High levels of death distress, that is death-related depression and anxiety, have been viewed as obstacles to living well until death (Chibnall et al 2002). It is questionable whether the increasing medicalisation of death has lead to the diminution of treatment of psychosocial symptoms: With mum’s depression they didn’t take it much further and really didn’t do anything about it because she wasn’t acknowledging that she was depressed… don’t know what they could have done, just brought someone into the home to chat with her as mum wouldn’t talk. HEALTH SOCIOLOGY REVIEW

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Apart from the range of physical symptoms, terminally ill people suffered from a variety of psychosocial factors including concerns about the family’s welfare (41%), concerns about money (13%), concerns about settling his/her affairs (11%), unresolved family issues or conflicts (14%) and spiritual or religious concerns (6%). Many of these concerns require a period of time for resolution prompting the call for caring, yet timely, communication with seriously ill people and their families about impending death (Lugton 2003). Additionally, few people in their last months of life accessed social workers or psychologists (16%) who are presumably better able to assist with these concerns than medical and nursing staff in an over-stretched health care system.

Awareness and acceptance of dying Awareness of dying has featured strongly in the sociological literature about preparation for death and the management of dying (Field 1996; Kellehear 1990; Glaser and Strauss 1966) and in the palliative care philosophy of a good death (McNamara 1994). It is important to have a reasonable period of time before the death in which the ill person and their family can adjust to the dying process, make personal and public preparations and engage in farewells (Kellehear 1990). It is equally important that sufficient time is allowed for therapeutic interactions to take place (Sandman 2005). Achievement of a good death requires not only an awareness of approaching death but some level of acceptance of dying by the terminally ill person and their family. Acceptance is the key to opening channels of communication, but this acceptance must not just rest with dying people and their families as health professionals may also play their part in discussions about the dying process (McNamara 2001). Our study did not ask terminally ill people directly if they were aware of their impending death as this kind of questioning in a populationbased study would no doubt raise ethical and methodological problems. However, primary carers were questioned as to whether, in their opinion, the deceased person knew that he or 378

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she was likely to die because of the illness. While 64 per cent ‘definitely’ knew that death was likely and 20 per cent ‘probably’ knew, only 12 per cent answered that they either ‘probably’ or ‘definitely’ did not know, while five per cent could not answer. It appears from retrospective reports that the level of awareness may have increased from earlier times when it was not common practice for doctors to discuss the diagnosis or prognosis of conditions with their patients (Good et al 1990; Thomsen et al 1993; Lugton 2003). Nevertheless, the time frame for awareness is also important given the long term nature of the conditions from which people in the study died. When we asked carers when they became aware that the ill person was going to die, 20 per cent only knew within four weeks of the death occurring, another 17 per cent knew between one and three months and 41 per cent knew greater than three months, leaving 22 per cent who did not realise the seriously ill person was going to die. It appears that many primary carers had little time between awareness of the impending death and the death itself to deal with family, financial and practical concerns, to take advantage of the time that was left, and prepare for the event and its aftermath. In addition to awareness (or lack of awareness) of imminent death, we also explored the concept of acceptance of death by seriously ill people in the months before they die. According to Sandman (2005), acceptance, whether it is cognitive or emotional, is a key element in achieving a good death, though for some emotional defiance is an important but idiosyncratic response to the dying process. Even in the state of defiance there may be a level of awareness, though preparations for death may be hampered by resistance to dying. In our study we found that 67 per cent were ‘definitely’ or ‘fairly’ accepting of approaching death while 12 per cent of people were ‘not at all accepting’. This is a large scale study that lacks an in-depth qualitative approach which would allow us to determine if acceptance was achieved peacefully, begrudgingly or through sheer exhaustion. However, the following examples are illustrative of the broad range of responses people had to Volume 16, Issue 5, December 2007

The mismanagement of dying

accepting the dying process as well as an insight into the ramifications for acceptance or nonacceptance of family carers: My husband was very stubborn and could not accept his illness and would not accept any help from other people. I have a teenage daughter who is struggling to accept the situation and is having difficulty coping with her life. Silver Chain [community care] were angels and ward 71 in the hospital were super angels. The last four days were euphoric for the whole family. They were superb. It was the perfect ending.

For most people the realities of dying involve day to day concerns of dealing with the difficult physical symptoms, getting to doctor’s appointments and often moving backwards and forwards from hospital to home. An open awareness of dying and a peaceful acceptance of death are luxuries beyond the everyday experience of most dying people and their families. We were also interested in knowing if people who died from cancer, as opposed to non cancer conditions, were more aware and more accepting of dying. Field (1996) has argued that people who are dying from chronic diseases, which have uncertain trajectories, may not develop awareness of approaching death in a similar manner to those who receive a diagnosis of cancer, with its more predictable trajectory. To investigate this question, we divided our study population into three groups; those who died from cancer (70%), those who died from a cardio-respiratory disorder (17%) and those who died from other conditions (13%) which included chronic renal failure, chronic liver failure, Alzheimer disease, Parkinson’s disease, motor neurone disease and multi-organ failure. We found that a greater proportion of those who died of cancer (89%), as opposed to cardiorespiratory (74%) or other conditions (68%), ‘definitely’ or ‘probably’ knew of their impending death. Similarly, a greater proportion of those with cancer were ‘definitely’ or ‘fairly’ accepting of their approaching death (78%) compared to Volume 16, Issue 5, December 2007

people who died of cardio-respiratory (72%) or other conditions (71%). It is important to note that while the proportion of males in each of the three groups was similar (approximately 64% of each group were male), the age at death varied across the groups from cancer with a mean age at death of 70 years, to other conditions (mean age of 77 years) and cardio-respiratory conditions (mean age of 78 years). Our descriptive analysis did not take into account the possible confounding effects of gender and age. The awareness of primary carers to the approaching death of the dying person also varied depending on whether the person was dying of cancer or some other condition. We found that over 80 per cent of primary carers realised the person with cancer was going to die, compared to 77 per cent realisation for those dying of other conditions and 60 per cent realisation for those dying of cardio-respiratory conditions. Even though the awareness of dying may be greater for those with cancer, the news of approaching death can come in a manner that demonstrates the lack of support and empathy for dying people and their families: The oncologist did not say Peter was going to die. When the nurse called round she read out his notes and came to the word ‘terminal’. We rang the oncologist and he said he had nothing more to offer Peter. We fell in a heap as we were not sure of the next step. We tried alternative medicine but it was too late.

Support during the dying process I felt that I should have had someone here to help me, just one person for me to talk to and explain to me what I should be doing and how to handle things.

Perhaps now, more than ever, people need support during the dying process. As we have seen in our study dying is a complicated business, not just for the dying person, but also for their primary carers. Most likely people will look to, or expect, the health care system to provide some guidance (McNamara 2001) as there are few other viable systems of community support in late modern Western societies (Kellehear 2007).

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We found that most people in our study had seen a host of medical specialists (70%), allied health care professionals (32%) and one or more general practitioners in the months before death (71%): leading to confusion and mixed messages. Added to this were repeated hospital visits of varying duration (79%), with yet more health professionals and advice: I felt that no one was in control of the whole process … we seemed to get handed around and needed someone who could tell us what was going on among all these highly educated people.

We were interested in finding out the perceived level of support received by the deceased person and his/her family. As such, we asked the primary carer ‘Overall, do you feel that you and your family got as much help and support from health services as you needed when caring for (name of deceased)’. We found that almost two thirds of people felt that they ‘got as much support as they needed’ (64%) while 28 per cent of people believed that they needed more support; they either received ‘some support but not as much as they needed’, ‘they needed far more support’ or ‘did not receive any support’. Conversely, nearly eight per cent of people answered that they ‘did not need any help’. A surprisingly high number of people responded that they did not need any more help, despite our previous evidence that demonstrates high levels of difficult symptoms and concerns. Clearly the expectations of what may be offered by the health care service are low. Further still the reports of people who needed more help are also an indictment of the level of neglect dying people and their family’s experience. Requests for help cited by the primary carers included a variety of extra supports that he/she thought that the deceased person and family may have needed. These ranged from practical assistance with medications and equipment through to information on what to expect as the family member died. This was of particular importance to carers, many of whom were themselves infirmed, as the following example illustrates. The carer needed:

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Help with gardening and shopping, practical help with everyday chores. I had to wash the bed linen every day because of his urinary incontinence. I have severe osteoarthritis and use a walking stick and have a pace maker and I am hypoglycaemic.

Judging by many of the comments there appeared to be an overwhelming need for information about the dying process with people expressing fear and disillusionment with the lack of support: I would have liked lots more information on the medication and any side effects. I would have liked a lot more information on the process of death. I was so unaware of how the last moments would be and I was on my own and very frightened. Sometimes you need someone to explain the terminology to you, and maybe what the next stage will be. Someone to explain to you how or where to go for funeral services. The procedure about what happens to the body. What is available to you and the patient. Noone offers anything to you, you have to keep asking questions of everyone.

It is clear that it is not only the dying person’s well-being that is compromised by the inadequacy of care they receive in the last months of life. Our telephone interview included questions about the carer’s health and their ability to move on with their lives after the death. We found that there was a statistically significant difference in the health of carers since their family members’ deaths and the level of support received by carers and their families during the last months of life (c2=24.420, df=2, p<.001) (Table 2). The health of primary carers who needed more support became ‘a bit’ or ‘a lot’ worse after the death of their family member as compared to those carers who ‘did not need help’ or ‘got as much as needed’ or ‘did not receive any support’.

Conclusion There is very little information available about the experiences of dying people and their families. Their accounts do not make for popular reading and their voices are rarely heard by those Volume 16, Issue 5, December 2007

The mismanagement of dying

Table 2: The level of support received compared to the health of carers Carers health after death of family member Improved or stayed the same (n=704)

Got a bit or lot worse (n=357)

Did not need help or got as much as needed

77%

63%

Needed more support

19%

32%

Did not receive any support

4%

5%

Level of support

in a position to make a difference. Before we even began our research we heard from administrators in nursing homes that they could not, or would not, support the research. Many of their residents did not have a family member who could speak with any authority about what happened in the months before their relative died. This means that we could not research the experiences of people who live in residential aged care facilities (RACF) in Western Australia. In a two and half year period (2000-2002) 16 per cent of Western Australians both lived and died in an RACF and another three per cent moved to an RACF shortly before dying (McNamara and Rosenwax 2007). Following our study, which presents a population-based perspective, we now know more about the experiences of chronically and seriously ill people who remained at home with their families in the months before they died. For a large number of these people their time was spent transferring backwards and forwards from hospital; for a minority of others time passed with minimal medical support. Despite the relatively high level of health care service use and medicalisation of the dying process, a high proportion of carers reported that the dying person suffered, with many in unacceptably high levels of pain and with a large number of their concerns ignored. It is an understatement to claim that their dying was mismanaged. Despite the growth of palliative care services, and the awareness of this service by primary carers, there is still miscommunication and poor end-of-life care. It appears that carers and their dying Volume 16, Issue 5, December 2007

relatives have come to expect little of the health care service and we as a society have become accustomed to the entrenched neglect of dying people. Theories of self management do not translate well to the experience of dying and caring for someone who is dying. The once proud and capable are stripped of autonomy and ability when they are ill, frail and afraid. Certainly we can suggest increased palliative care services and promote the use of advanced directives, but dying people also need a strong form of advocacy that is clearly missing in Australian end-of-life care. The historically recognised responses of support for the dying are now endangered (Kellehear 2007:256) and the medical model of dying has failed. Our study confirms these observations in an empirical manner which gives voice to those who are otherwise not heard. In response we need a multi-level model of advocacy which works from the political to the everyday and which enshrines good end-of-life care in our homes and institutions.

Acknowledgements This research was funded and supported by the National Health and Medical Research Palliative Care Research Programme. We gratefully acknowledge the many people who contributed to this research including Professor D’Arcy Holman, Dr Kirsten Auret and the staff of the Survey Research Centre, School of Population Health, The University of Western Australia. We are particularly grateful to the 1071 family carers who took part in the telephone survey. HEALTH SOCIOLOGY REVIEW

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References Addington-Hall, J.; Walker, L.; Jones, C.; Karlsen, S. and McCarthy, M. (1998) ‘A randomised controlled trial of postal versus interviewer administration of a questionnaire measuring satisfaction with, and use of, services received in the year before death’ Journal of Epidemiology Community Health 52(12):802-807. Addington-Hall, J. and Higginson, I. (2001) Palliative Care for Non-cancer Patients Oxford University Press: Oxford. Australian Bureau of Statistics (2005) Causes of Death, Australia 2005 ABS available at: http://www.abs.gov.au/ausstats/[email protected]/0/ 2093DA6935DB138FCA2568A9001393C9 Barbato, M. (2002) Caring for the Dying McGraw Hill Book Company: Sydney. Beckstrand, R.; Clark Callister, L. and Kirchhoff, K. (2006) ‘Providing a “good death”: Critical care nurses’ suggestions for improving end of life care’ American Journal of Critical Care 15(1):38-42. Chibnall, J.; Videen, S.; Duckro, P. and Miller, D. (2002) ‘Psychosocial–spiritual correlates of death distress in patients with life-threatening medical conditions’ Palliative Medicine 16(4):331-338. Clark, D. and Seymour, J. (1999) Reflections on Palliative Care: Sociological and Policy Perspectives Open University Press: Buckingham, UK. Field, D. (1996) ‘Awareness and modern dying’ Mortality 1(3):255-265. Fordham, S. and Dowrick, C. (1999) ‘Is care of the dying improving? The contribution of specialist and non-specialist palliative care’ Journal of Family Practice 16(6):573-579. Glaser, B. and Strauss, A. (1966) Awareness of Dying Weidenfeld and Nicholson: London. Giddens, A. (1991) Modernity and Self-identity: Self and Society in the Late Modern Age Stanford University Press: Stanford, CA. Good, M.; Good, B.; Schaffer, C. and Lind, S. (1990) ‘American oncology and the discourse of hope’ Culture, Medicine and Psychiatry 14(1):59-79. Hinton, J. (1996) ‘How reliable are relatives’ retrospective reports of terminal illness? Patients’ and relatives’ accounts compared’ Social Science and Medicine 43(8):1229-1236.

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Hoyert, D.L. (1996) ‘Mortality trends for Alzheimer’s disease: 1979-1991’ Vital Health Statistics 28(1):1-23. Hughes, K. (2004) ‘Health as individual responsibility: Possibilities and personal struggle’ in Tovey, P.; Easthope, G. and Adams, J. (eds) The Mainstreaming of Complementary and Alternative Medicine: Studies in Social Context Routledge: London and New York. Jordens, C.; Little, M.; Kerridge, I. and McPhee, J. (2005) ‘From advance directives to advance care planning: Current legal status, ethical rationales and a new research agenda’ Internal Medicine Journal 35(9):563-566. Kapo, J.; Harrold, J.; Carroll, J.T.; Rickerson, E. and Casarett, D. (2005) ‘Are we referring patients to hospice too late: Patients’ and families’ opinions’ Journal of Palliative Medicine 8(3):521-527. Kellehear, A. (2007) A Social History of Dying Cambridge University Press: Cambridge, UK. Kellehear, A. (1990) Dying of Cancer: The Final Year of Life Harwood: London. Lawton, J. (2000) The Dying Process: Patients’ Experiences of Palliative Care Routledge: London. Logue, B. (1994) ‘When hospice fails: The limits of palliative care’ Omega 29(4): 291-301. Lugton, J. (2003) Communicating with Dying People and Their Relatives Ausmed: Melbourne. Mannino, D.M.; Brown, C. and Giovino, G.A. (1997) ‘Obstructive lung disease deaths in the United States from 1979 through 1993. An analysis using multiple-cause mortality data’ American Journal of Respiratory and Critical Care Medicine 156(3 Pt 1):814-8. McNamara, B. and Rosenwax, L. (2007) ‘Factors affecting place of death in Western Australia’ Health and Place 13(2):356-367. McNamara, B.; Rosenwax, L. and Holman, C.D.J. (2006) ‘A method for defining and estimating the palliative care population’ Journal of Pain and Symptom Management 32(1):5-12. McNamara, B. (2004) ‘“Good enough” death: Autonomy and choice in Australian palliative care’ Social Science and Medicine 58(5):929938. McNamara, B. (2001) Fragile Lives: Death, Dying and Care Allen and Unwin: Sydney. Volume 16, Issue 5, December 2007

The mismanagement of dying McNamara, B.; Waddell, C. and Colvin, M. (1994) ‘The institutionalisation of the good death’ Social Science and Medicine 39(11):1501-1508. Petersen, A. and Lupton, D. (1996) The New Public Health: Health and Self in the Age of Risk Sage: London. Rosenwax, L. and McNamara, B. (2006) ‘Who receives specialist palliative care in Western Australia and who misses out’ Palliative Medicine 20(4):439-445. Rosenwax, L.; McNamara, B.; Blackmore, A. and Holman, C.D.J. (2005) ‘Estimating the size of a potential palliative care population’ Palliative Medicine 19(7):556-562. Sandman, L. (2005) A Good Death: On the Value of Death and Dying Open University Press: Berkshire, UK. Seale, C. and Cartwright, A. (1984) The Year Before Death Avery: Aldershot. Seymour, J.; Gott, M.; Bellamy, G.; Ahmedzai, S.H. and Clark, D. (2004) ‘Planning for the end of life: The views of older people about advance care statements’ Social Science and Medicine 59(1):57-68.

Survey Research Centre, The University of Western Australia (2006) Computer Assisted Telephone Interviewing Facility (Survey Craft CATI System). Available from: http://www.publichealth.uwa. edu.au/welcome/consulting/src. Thomsen, O.; Wulff, H.; Martin, A. and Singer, P. (1993) ‘What do gastroenterologists in Europe tell cancer patients?’ Lancet 341(8843):773776. Walker, C. (2003) ‘Putting “self” back into self management’ in Walker, C.; Peterson, C.; Millen, N. and Martin, C. (eds) Chronic Illness: New Perspectives and New Directions Tertiary Press: Croyden, Victoria, pp.53-66. Walters, G. (2004) ‘Is there such a thing as a good death?’ Palliative Medicine 18(5):404408. World Health Organisation (1990) Cancer Pain Relief and Palliative Care Report of a WHO Expert Committee Technical Report Series No 804 WHO Press: Geneva. Zimmermann, C. (2007) ‘Death denial: Obstacle or instrument for palliative care? An analysis of clinical literature’ Sociology of Health & Illness 29(2):297–314.

Advances in Contemporary Aged Care: Retirement to End of Life Edited by: Margaret McMillan and Isabel Higgins ISBN 978-0-9757710-1-3 – Contemporary Nurse* – Volume 26 Issue 2 October 2007 Foreword: ANMC National Guidelines on Boundaries of Professional Practice for Nurses and Midwives — Denise Sharp

Section 1: Innovations in the care of older people Editorial: Issues in older person nursing — Isabel Higgins Towards innovation: The development of a person-centred model of care for older people in acute care — Carmel Peek, Isabel Higgins, Sally Milson-Hawke, Margaret McMillan and Deborah Harper Trends and challenges in the management of tracheostomy in older people: The need for a multidisciplinary team approach — Vicki Parker, Gai Shylan, Wendy Archer, Paula McMullen, Kelvin Smith, Michelle Giles, Jane Morrison and Nikki Austin Advance care planning (ACP): The nurse as ‘broker’ in residential aged care facilities — Sarah Yeun-Sim Jeong, Isabel Higgins and Margaret McMillan

Urinary stress incontinence and overactive bladder symptoms in older women — Pauline Chiarelli The immediate needs of relatives during hospitalisation of acutely ill older relatives — Isabel Higgins, Terry Joyce, Vicki Parker, Mary Fitzgerald and Margaret McMillan Section 3: Professional nursing issues Editorial: The changing skill mix and scope of practice of health care workers in New South Wales: Implications of education and training reforms for registered nurse practice, performance and education — Jane Conway The negative attitudes of nurses towards older patients in the acute hospital setting: A qualitative descriptive study — Isabel Higgins, Pamela Van der Riet, Lynne Slater and Carmel L Peek Delirium dichotomy: A review of recent literature — Sue Brown, Mary Fitzgerald and Ken Walsh

Section 2: Gender, health and family perspectives Editorial: Person-centered approach to care (PCA): A *Indexed/abstracted in: Thomson Scientific SCIE & SSCI; NLM philosophy of care and management for carers — Helen PubMed/Medline; EmCare; PsycINFO; Scopus; CINAHL & AMI. Bellchambers and Carol Penning Available separately for purchase by libraries and for course adoptions; evaluation copies may be requested eContent Management Pty Ltd PO Box 1027, Maleny QLD 4552, Australia Tel. +61-7-5435-2900; Fax. +61-7-5435-2911 [email protected] www.e-contentmanagement.com

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Copyright © eContent Management Pty Ltd. Health Sociology Review (2007) 16: 384 396

Death and the body beautiful: Aesthetics and embodiment in press portrayals of requested death in Australia on the edge of the 21st century ABSTRACT

KEY WORDS Sociology, requested death, media, discourse analysis, aesthetics, embodiment

This paper develops discourse analysis of Australian press representations of dying during the operation of the Northern Territory of Australia’s Rights of the Terminally Ill Act 1995 (McInerney 2006). Operating in tandem, the discourses of aesthetics and embodiment constructed contemporary dying as an intolerable corporeal state. The body in disarray is attractive to media imperatives of drama and crisis, and dominated press reports during the analysed period. Such images functioned as absolute justification for a medicallyinduced requested death. Modern equating of physical integrity and personal dignity supports such responses to dying. The requested death interventions of euthanasia and physician-assisted suicide were depicted as halting the physical deteriorations associated with terminal illness and thereby redeeming the dying person, by providing them with the opportunity to reclaim the social status lost via their progressive corporeal decline. Received 20 March 2007

Fran McInerney School of Nursing and Midwifery Australian Catholic University Australia

Introduction

S

everal developments around dying and death in the latter half of the twentieth century can be seen to constitute a new social movement (NSM) of this epoch: the requested death movement (RDM) (McInerney 2000). The movement has achieved progressive international visibility in social and legislative arenas in the ‘developed’ world in the last two decades of the twentieth century, which persists into the new millennium. One of the most important manifestations of this movement was the passage and operation of the Northern

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Accepted 10 August 2007

Territory (NT) of Australia’s Rights of the Terminally Ill (ROTI) Act 1995 in 1996-7, the first legislation to legalise euthanasia and physician-assisted suicide (PAS). Elsewhere (McInerney 2006), I have explored press constructions of death and dying that emerged around the ROTI Act 1995, specifically an heroic discourse that featured in constructions of both those requesting death and those supporting such requests. The first part of this paper identifies two further significant discourses identified in the Australian press which operated in tandem during that time period, those of aesthetics and embodiment. These discourses are argued to resonate with modern preoccupations with corporeal presentation and identity, and I examine how this emphasis might influence constructions of contemporary dying, in particular the association between bodily integrity and requested death. Volume 16, Issue 5, December 2007

Death and the body beautiful: Aesthetics and embodiment in portrayals of requested death in Australia

NSMs arise in part in response to state penetration into formerly private spheres, such as the body and sexuality. Social movement organisations and their activists seek to persuade others of their framing of particular conditions as problematic and to garner support for their calls for change. RDM proponents call for the redefinition of the relationship of the individual to their body as they approach death, principally via the means of euthanasia and PAS. The media is an important cultural resource; a primary mechanism by which individuals construct meanings of social phenomena, including social problems (Gamson 1995). This is particularly relevant for social issues of which people have little or no personal experience (Chapman and Lupton 1994) such as death (Crayford et al 1997; Nancarrow Clarke 2004), making it a potent conduit for both the RDM’s portrayal of contemporary dying as a grotesque and intolerable predicament, and its preferred ‘solutions’ of euthanasia and PAS for this putative situation. Following Elias’s (2000 [1939]) notions on the ‘civilizing process’, I argue that these constructions around dying can be seen as a particular product of late moder n sensitivities to corporeal imperfections and bodily control more generally.

Sites of requested death discourse Prominent depictions of dying and death were identified in four Australian newspapers around the time of the ROTI Act 1995. These publications were The Age and Herald Sun dailies from Victoria, The Northern Territory News (NTN), the NT’s daily, and The Australian, the country’s national daily. The first two were selected because I reside in Victoria and their circulation covers a wide socio-economic demographic. The NTN was selected as, while the issue was framed as of national — indeed, international — significance from early on, this publication provided media exposure to the particular geographic region in which requested death was legalised and enacted. The national daily was added to add further geographic diversity. The Northern Territory News and the Herald Sun are both ‘tabloid’ publications, while The Age and The Australian are ‘quality Volume 16, Issue 5, December 2007

broadsheets’ which appeal to ‘a well-educated, middle-class, national readership and [also] command considerable political influence nationally’ (Hazelton 1997:74). As Lupton (1994:28) notes, ‘[t]here are major differences in the ways that the tabloid and the “quality” or broadsheet press reports issues and events’, with tabloids opting for dramatic visuals such as ‘huge headlines’ and large photographic images, and the broadsheets more detailed coverage. A number of press ‘genres’ (Bell 1991:13), namely news items, commentary pieces, editorials, and letters to the editor were identified for analysis. Lupton (1992:148) promotes the use of such data, as the first three classifications capture both the ‘official’ voice of the newspaper and: … overtly seek to express an opinion, sum up the issues and make a moral judgment or decision upon the issue … [therefore] the stance and mode of expression chosen by them is telling.

Letters to the editor ostensibly contain a diverse array of opinions, and while an important aid to credibility in discourse analysis as a means to assess audience positioning, it is necessary to recognise that this is inevitably an edited response (Karpf 1988). Despite the differences in format and genre types, both tabloids and broadsheets represented the intersecting discourses of embodiment and aesthetics with a similar level of frequency and emphasis. Three time periods generating a large volume of text were chosen for analysis. These coincided with key events in the rise and fall of the NT legislation, a sampling method reflecting Chilton’s (in Gamson and Modigliani 1989:11) concept of ‘critical discourse moments, which make the culture of an issue visible’. The first interval was February-May 1995, from the NT’s Chief Minister Marshall Perron’s announcement of his proposal for legalising active voluntary euthanasia in that Territory to its passage by the region’s Parliament. The second period, AprilJuly 1996, covered the announcement of the proclamation day for the ROTI Act 1995, the indication by a Federal parliamentarian Kevin Andrews of his intention to introduce a Private

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Member’s Bill (henceforth called ‘the Andrew’s Bill’), designed to override the law, to the law’s eventual coming into force on July 1 1996. The final period spanned September 1996 to March 1997, wherein many crucial events took place, including the introduction of the Andrew’s Bill (the Euthanasia Laws Bill 1996) into the Lower House of the Federal Parliament, the deaths of four individuals under the provisions of the ROTI Act 1995, through to the eventual passing of the Andrew’s Bill – the Euthanasia Laws Act 1996 – into legislation, with its consequent overthrow of the ROTI Act. This total 15-month period gave rise to hundreds of items, articles and editorials, and hundreds more letters, which constitute the primary textual data of this paper. While the dying and deaths of many individuals were directly and indirectly depicted in this data, three were especially prominent, in keeping with the press’s predilection for personalisation. These three were ‘MB’, who publicly if unsuccessfully sought to be the first person to use the ROTI Act, ‘BD’, who became the first man to access the provisions of the Act, and ‘JM’, who was the first woman to die under the Act. I refer to these individuals via their initials only out of a consideration for their privacy. While their names are on the public record, as van Dijk (1988:79) notes these are also the names of their families, and owing to the potentially distressing fact and circumstances of their deaths, they need not be overtly identified, as this omission does not obscure the essential properties of the media texts concerned, which is the focus of this paper. These three individuals’ stories dominated press accounts, as they became key proponents of the RDM via their quests for medical assistance to die. In keeping with their presence within the media, they feature prominently in the following analysis. My particular focus on the press was taken in recognition of the importance of the print media for social movements (Gamson 1995) and their framing of social problems and solutions (Seale 2003). I assessed content via a consideration of its volume, frequency, emphasis, standpoint, and topic or theme. Linguistic devices such as metaphor, cliché, analogy, drama, pictures,

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images, binaries and repetition, and ‘modes of portraying events and news actors’ (Hazelton 1997:75-6) were also noted. Texts were analysed for their points of difference or contradiction as well as consistency (Potter and Wetherell 1987), both within and between genres and publications, in order to facilitate identification of dominant patterns and to explore the presence or otherwise of ‘intertextuality’, or ‘how a text incorporates parts of other texts’ (Fairclough 1988:113). As ‘multiple discourses’ must compete with others already present in the social order (Loseke 1995), the presence of certain framings of the issue of requested death, alongside the absence of others, is telling in explicating the struggle to make meaning of this issue. Having identified ‘the minute details of linguistic structure’ within the selected media representations of requested death, I was then concerned with isolating the texts’ ‘social and historical situation’ (Fowler 1991:67), or in Kellehear’s (1993:48) words, ‘trac[ing] their source beyond their setting’. In recognition that the media privileges certain meanings over others, the aim of this activity was to uncover the links between discourse structures and social situations (Lupton 1992). Various imperatives shape media discourse, including novelty, drama, negativity, simplification, personalisation, and generalisation (Best 1995; Bell 1991). In the data analysed, these imperatives resonated with the RDM’s framing of the conditions of contemporary dying. While fully acknowledging the sufferings and deaths of the individuals concerned, I also recognise that such experiences and their depiction within the media form part of the social construction of the RDM, and as such are part of the struggle over meaning making around dying and death generally.

Grotesque death Following Plessner (1976), Turner (1984:41) refers to ‘two dimensions of the living body’ necessary to embodiment. These are Leib, the subjective, experienced body, and Korper, the objective, external body. In modernity, dominated by the Cartesian framework, the latter dimension has prevailed in constructions of the body, and Volume 16, Issue 5, December 2007

Death and the body beautiful: Aesthetics and embodiment in portrayals of requested death in Australia

this was also the case in the present study. This Korper, in various stages of decline and decay, took centre stage in the analysed data. The Leib or experienced body was constructed as arising from and crucially, secondary to the deteriorating physical body of the dying person. This emphasis on the external body graphically reinforced the existence of the putative problem of grotesque and intolerable dying which the RDM purports to redress. Keenly detailed accounts of the corporeal decay of dying individuals were commonplace in the press, as it fulfilled its requirements for the dramatic and negative: His lower body was so swollen from oozing Kaposi’s lesions that he could not walk, his genitals so swollen that he required a catheter to drain his bladder, his fingers gangrenous from clotted arteries … [NTN, 07/01/97:28].

Integrity of the body was constructed as central to integrity of the person: … the pain, intractable vomiting, gastrointestinal haemorrhage, air starvation and massive loss of weight…it’s easy to picture that this [dying of cancer] is not a dignified process [The Australian, 23/02/95:7].

As Oberg (1996:707) notes, in modernity ‘… a person’s true identity becomes expressed via the body’. Typifying narratives personalised the experience of dying; a powerful discursive strategy that made the examples more compelling. References to palliative care – a response involving symptom management and other forms of care that stop short of inducing death – encountered in the press, while rare, again focused on the corporeally gruesome and chaotic: ‘The state of this poor man’, says one of the nurses: ‘He rattled when he walked! … He was very confused in hospital, urinating into the flowerpot, vomiting at the desk. He’s very end-stage now, he’s fading fast …’ [The Australian 13-4/07/96: Review 1].

Where palliative care was acknowledged, this was essentially dismissive. In this excerpt from a letter written by Dr Philip Nitschke, the principal Volume 16, Issue 5, December 2007

Australian requested death activist from the medical profession, he emphasises his patient MB’s – the first person to seek to use the ROTI Act 1995 – biophysical state, and dismisses palliative endeavours: He [MB] was receiving very good palliative care, but even then he said: ‘You would not leave a dog lying around in its own vomit, you would put a dog down’, Dr. Nitschke said [Herald Sun 04/08/96:21].

Here the claim of ‘very good palliative care’ sits oddly with visions of MB marooned in his own excrement. This reference to excreta was not isolated, as press accounts emphasised the degrading effects of incontinence: If I leave it [euthanasia] too late, there could be a situation where I couldn’t change my colostomy bags, and my husband couldn’t do it. It’s such a repulsive job … It is so easy to get into a situation where you lose control of your life [The Age 25/03/95:6].

Above, this woman equates ‘control of her life’ with changing her own colostomy bags. She would literally sooner die than accept help with this ‘repulsive job’, which is constructed as ‘a fate worse than death’. Medicine’s failure to relieve (and at times its exacerbation of) BD’s (the first person to successfully access the ROTI Act 1995) symptoms featured prominently; here in his posthumously published letter he laments medically induced incontinence: Morphine causes constipation – laxatives taken work erratically, often resulting in loss of bowel control in the night. I have to have a rubber sheet on my bed, like a child who is not yet toilet trained … My own pain is made worse by watching my wife suffering as she cares for me; bathing and drying me, cleaning up after my ‘accidents’ in the middle of the night [The Australian 5-6/10/96:26].

As Seymour (1998:156) notes, ‘continence is, in effect, the conquest of the body by society’, but the relationship between the two is ‘a precarious truce’. Maintenance of continence distinguishes the adult from the

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child, but is also central to ‘the complex shaping of a sense of social decency and social horror’ (Greenblatt 1990:60). Failure to maintain continence can result in social rejection and/ or withdrawal, and has been cited as a strong factor influencing calls for euthanasia (Seale and Addington-Hall 1994); certainly in BD and others’ cases it functioned as a power ful justification for their requesting death. JM, the second person to die under the ROTI Act 1995, captured wide media attention at her dramatic press conference, which focused on her physical presence and particular embodiment of the dying person: This disease [mycosis fungoides] affects the skin and causes very severe continuous itching over large areas of the body. The skin splits, ulcerates, bleeds and scabs repeatedly [The Age 07/01/97:A11].

While her knitted cap and eyeglasses obscured much of her physical state in the many press photographs published, the accompanying text left little of the horror of her condition to the imagination. Her very appearance served as sufficient justification for her requested death; her husband declared that requested death opponent and author of the ROTI-overturning Euthanasia Laws Act 1997, Kevin Andrews, would have relented in his stance if he had physically seen JM: ‘I often thought of ringing Kevin Andrews and getting him down here to look at my wife’ he said [The Australian 08/01/97:4].

JM’s condition breached the most fundamental of bodily boundaries, the skin. As Miller (1998:52) notes, ‘there is nothing quite like skin gone bad; it is … marrings of the skin which make up much of the substance of the ugly and monstrous’. JM’s disfiguring, malodorous, and suppurating lesions functioned as a type of incontinence, with its associated loss of corporeal control. Kristeva (1982:71) speaks of the powerful symbolism of such putrid breaching of ‘corporeal orifices’: … a wound with blood and pus, or the sickly acrid smell of sweat, of decay, does not signify

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death … refuse and corpses show me what I permanently thrust aside in order to live. These bodily fluids, this defilement, this shit, are what life withstands, hardly and with difficulty, on the part of death (Kristeva 1982:3).

The public display of JM’s physical state at her press conference compounded its grotesquerie, enhanced its typifying power, and reinforced requested death as a solution to her and others’ plights.

Messy death In further demonstration of the aesthetic discourse, attempted suicide was portrayed as risking further disfigurement of the dying body. A dying individual described as ‘young’, ‘vibrant’ and ‘handsome’, is depicted as fearful of failing in his suicide bid: … a young man in his 20s, who is described as ‘vibrant, handsome, articulate and intelligent’, developed brain cancer … He told his GP that he was considering throwing himself from a high building but that he was worried that he might fail to kill himself or upset those who discovered his broken body … the last thing he said to his doctor was ‘You will do this well, won’t you?’ [The Age 25/3/95:1].

Two months before his own successful use of the ROTI Act 1995, BD wrote to his local daily deploring the difficulties in accessing requested death and the subsequent risks of suicide: To [take one’s life] successfully in a non-violent manner is extremely difficult as the medical profession jealously guards these secrets [NTN 20/7/96:11]. As lay individuals, even if physically capable, those attempting suicide and those assisting were depicted as inadequate; indeed it was confidently claimed, ‘most DIY suicides are botched’ [The Age 6/2/95:10]: … the frightening prospect of an inexperienced family member botching an assisted suicide and its effect on the family thereafter is an awful thing to contemplate [The Australian 23/2/95:7].

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NT Chief Minister and ROTI Act 1995 author Marshall Perron ar gued that his legislation ‘would reduce violent suicides and comfort the elderly’ [The Age 18/10/96:A4]. Certainly, the options available to those selfadministering death appeared dramatic and violent: … [those denied requested death] must slash their wrists, shoot themselves, throw themselves from windows or under trains, or gas themselves. In Victoria, you are permitted to commit suicide provided you do it in the most violent manner possible, guaranteed to cause the maximum distress to your family [The Age 2/4/95:16].

The grotesque implications of successful nonassisted suicide were graphically depicted in this letter to the editor: … where some poor bastard blows half his head off in the lounge room and is found by family, lying in a pool of blood with the rest of him scattered over the ceiling. Or being found, bloated and fly blown, hanging from a beam a few day’s [sic] later, perhaps by children [NTN 15/1/97:11].

Disfiguring and botched suicide attempts were constructed as ‘leaving the patient in worse shape than before’, where the ‘shape’ of such terminal conditions was itself constructed as a fate worse than death: … to deny a dying patient a right to a physician’s assistance opens the way to botched attempts at suicide with poison, guns or drugs that often leave the patient in worse shape than before [NTN 7/1/97:29].

By this construction, the only thing worse than dying without requested death was surviving an unsuccessful suicide bid. As one letter declared, ‘pity the poor sufferers who suffer even more on account of failed backyard attempts’ [The Australian 10/2/95:12].

Beautiful death Then Premier of the Australian state of Victoria, Jeff Kennett, was the most overt proponent of Volume 16, Issue 5, December 2007

this discourse, with his repeated references to the ‘beauty’ of requested death. Kennett was first cited coining this epithet in response to the NT legislature passing its ROTI Act 1995: … it is probably going to be a very beautiful end to what for many is a very painful existence [Herald-Sun 26/5/95:4].

The Australian [26/5/95:1] and the NTN [26/5/95:27] reported his view that the legislation would offer terminally ill people and their families ‘the most beautiful relief of all time’. The death of BD lead to further such commentary: To be able to die with grace and dignity at their choosing as opposed to suffering I think is just beautiful. Life is about choice: death should be about choice and politicians ought to butt out [The Age 27/9/96:6].

This ‘beauty’ is closely associated with the exercise of individual choice, thus working in tandem with an individualistic discourse. However, it is not choice per se that is beautiful; nowhere in the analysed press was the choice not to request death described in similar terms. The beauty in the choice to request death is intimately linked to the termination of a progressively corrupt body. For Kennett, requested death is about giving people: … an opportunity of [sic] dignity at a time when they’ve been, and are going through, so much pain and such a demeaning finish to, in most cases, what has been such a beautiful life [The Australian 30/9/96:3].

The dying body is thus antithetical to life; a degrading contradiction to former beauty. Such an attitude corresponds to Frank’s (1995:45) observations of popular media images, where ‘illness [is depicted] as pitiful in contrast to idealised health’. Kennett’s comments on the origins of his position were further illustrative of the particular nature of the ‘beauty’ identified in the choice to request death: All of us know people who are suffering, loved ones who the ageing process and illness get HEALTH SOCIOLOGY REVIEW

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Fran McInerney to the stage where you know medical care is not going to keep life prolonged beyond a certain period of time. And to have a dignified death planned and agreed to with your family … I think it would be a most beautiful exit for people … Mr. Kennett said one of the saddest aspects of his job had been to visit retirement homes and hospitals where old people were being kept alive with drugs [Herald-Sun 25/5/95:2].

Kennett was later more explicit about such visits, as in this report: I am still left with the very strong impression, of pictures in my mind, of going around a lot of our aged homes and seeing people literally being propped up or in some cases in a sort of foetal position, in bed waiting to die … We happen to live in a modern society and because it is a modern society we are going to extend the life of human beings in many cases well beyond their use-by-date [Herald-Sun 5/7/96:16].

Kennett reports vivid images of the corporeal decay of those living in nursing homes. The ‘modern’ ability of medicine to prolong life beyond its ‘beauty’ (with ‘use-bydate’ tapping into consumerist discourse and conjuring images of loss of utility, as well as souring and decay) is here used to justify calls for a ‘modern exit’ for such old people. From the opposite side of the political divide, former federal leader of the Australian Labor Party and former Governor-General of Australia, Bill Hayden, voiced almost identical sentiments in his support of requested death: I have visited too many nursing homes … seen too many vegetating old people who were once vigorous, vivacious personalities … This loss of personal control, of autonomy, of human personality would destroy my sense of personal dignity [The Australian 8-9/6/96: Review 1-2].

Via these constructions, the beauty of requested death lies in the choice to avoid the anticipated and perceived corporeal grotesqueries of illness and ageing. While people experiencing physical deteriorations associated

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with old age were not covered by the provisions of the ROTI Act 1995, their bodies were represented in similar fashion to the terminally ill, as images of the grotesque body, ever unfinished, exceeding its limits, ‘transgressing its own body’ (Bakhtin 1984:317), were used to support calls for requested death. Seale (1995:612) contends that the deteriorating bodies of those experiencing ‘extreme old age’ constitute ‘the horror stories of our time’. During the life of the ROTI Act 1995 the print media was replete with such stories and images, as the bodies of both the aged and dying were depicted as ugly, horrifying and incompatible with life. Marshall Perron himself included the old in his vision, if not his Act: The sponsor of the [NT] law, former Chief Minister Marshall Perron, said recently that for ‘some old person who feels it undignified and devastating to have all bodily functions looked after by others … legal euthanasia should be available’ [The Australian 28/6/96:19].

The ‘prurient voyeurism’ of the press (Fowler 1991) was given free reign in this construction of the dying person requesting death. Requested death, as the ultimate choice to arrest the progressive decay and defilement of the dying body, was constructed as a beautiful act.

Glorious dying In contrast to his protracted dying and its attendant disfigurement, BD’s requested death was constructed as glorious. In his posthumous letter [NTN 27/9/96:10,11], BD spoke of his ‘immense gratitude’ at being able to use the ROTI Act 1995, and being able to end his life in a ‘dignified and compassionate manner’. His physician Nitschke described the ‘euphoria’ and ‘honeymoon phase’ [The Age 29/9/96:15] following the successful physician consultations required under the NT legislation. BD reputedly referred to euthanasia as a ‘miracle’ [The Age 27/9/96:6], which sentiment Nitschke enthusiastically endorsed. Requested death was repeatedly constructed in such superlative terms. BD’s requested death was described in the language of the classical ‘good death’ (in the Volume 16, Issue 5, December 2007

Death and the body beautiful: Aesthetics and embodiment in portrayals of requested death in Australia

‘painless’ and ‘easy’ sense of the Greek ‘Eu Thanatos’ (Kellehear 1990:29)). A former NSW state politician diagnosed with AIDS had earlier expressed his wish for such a death: At some point, if I need to, I hope that I can hold out my arm one day or one night and have a little needle which takes me off quietly and peacefully after I’ve said my farewells. That’s how I would like to do it [The Australian 25/6/96:3].

Nitschke later reflected on MB’s thwarted desire for a beautiful death: You see, [MB] had this dream that he’d be able to find a little flat by the ocean so he could lie on a sofa and feel the sea breezes and have his life end that way ... [The Age 29/9/96:15].

Such beatific visions, similar to those identified in Seale’s (1995) research, were echoed in the following caricatured opinionative piece exploring requested death that reflects dominant values. It captures blissful, indeed sexual overtones, with the body of the ‘recipient’ of death depicted in supine supplication: … he bends over you, syringe in hand. How clear the solution in the glass barrel seems: a muscle relaxant, a sedative. There, in the needle slips … a touch more morphine, how thoughtful – ah, what bliss. You sink back drowsily, into the arms of that unseen lover for us all [The Australian 8-9/6/96: Review 1-2].

Here, even the intravenous injection is sanitised to the needle ‘slipping’ into the body, an image reiterated in the Herald Sun’s [28/ 9/96:2] account of BD’s death whereby ‘[h]e had pushed a computer button which slid a lethal injection into his arm’, as opposed to a less idealised, more biomedical construction of the physician injecting an intravenous line into a blood vessel and connecting it to the computerised drug delivery apparatus prior to commencing the computer program. Not even the fleeting physical pain of such a procedure was allowed to sully the image of death enacted Volume 16, Issue 5, December 2007

under the ROTI Act 1995, reportedly described by BD as ‘an act of love’ [The Age 27/09/ 96:1]. Saving oneself from the vicissitudes of an ugly, messy death was depicted as a literally redeeming act. Like BD’s before her, JM’s death under the ROTI Act 1995 was depicted as a beautiful release. Indeed, her death was constructed as all but obliterating the disfiguring nature of her disease, which had been so much of the focus of earlier accounts. Requested death was depicted as bringing about not only the cessation of her suffering and decay but a positive reversal of the defilement of her dying, with her husband portraying JM’s death as joyous and physically transformative: A quietly spoken Mr. M … spoke of his relief and sadness while watching [JM] slip out of his life. ‘Just before she went off to sleep she had a lovely smile on her face …’ [The Australian 8/1/97:4].

JM’s apparent metamorphosis in death has echoes of a ‘revivalist’ discourse, in keeping with Seale’s (2002:125) notion of the ‘conquest of the limitations of the body’, which involves a ‘transformation of death into life’ (Seale 1998:121). JM’s death was constructed as a ‘peaceful slumber’, a ‘gentle slipping’, and contrasted with the physical horror and struggle of the preceding years of her illness and the weeks in which she sought requested death. Her husband further observed: It’s not difficult to say goodbye to someone that you’ve seen so happy to get her wish [after they] had suffered so much [Herald Sun 7/1/ 95:5].

Requested death was literally portrayed, as JM articulated in her posthumous letter [The Age 17/1/97:4], as ‘a wish come true’. Within the embodiment/aesthetic discourse, her disfiguring terminal condition, coupled with the seepage of bodily fluids through her skin’s surface, and the associated itching and odour, were cumulatively constructed as a monstrous fate worse than death. Requested death was depicted as the sublime release from such a state.

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Modernity, the body beautiful, and the requested death movement The discourses of aesthetics and embodiment resonated generally with the language of NSMs. NSMs share a preoccupation with identity, personal behaviour, and embodiment, as they manifest in ‘all aspects of social and cultural life’ (Touraine 1985:778). For the RDM, these discourses are compatible with modern frames of meaning, both tapping into and strengthening constructions of euthanasia and PAS as ‘progressive’, culturally appropriate responses to dying. That these discourses are situated in modernity is not surprising; NSMs are themselves quintessential products of this epoch, arising in the second half of the 20th century alongside late moder nity’s preoccupation with individuality and selfidentity (Giddens 1991). The mass media too is a decidedly moder n entity, inevitably reflecting and reinforcing dominant modern discourse. In general terms, modernity can be viewed as the ‘modes of social life or organisation which emerged in Europe from about the seventeenth century…and which subsequently became more or less worldwide in their influence’ (Giddens 1990:1). Mennell (1992:29) notes that the aim of modern civilization ‘is to live with others in an orderly, well organised, just, predictable and calculable society’. Death fundamentally thwarts this goal, and has been the focus of vigorous and on-going efforts at control. Deeply influenced by such emphases, moder nity has ar guably transformed the contemporary experience of dying and death, albeit in complex ways. While as Elias (1985:76) contends, ‘knowledge of the causes of illnesses, of ageing and dying, has become more secure and comprehensive’, with longevity increasing to unprecedented levels (Kellehear 2000), associated morbidity is a problematic paradox of contemporary existence (Turner 1987). Further, mortality itself has not been overcome by modern progress; rather it represents, as Giddens (1991:162) notes, ‘nothing more or less than the moment at which human control over human existence finds an outer limit’.

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Manners of death As well as exemplifying modern medicine’s failure to conquer both morbidity and mortality, contemporary dying poses a particular challenge to prevailing notions of socially acceptable behaviour. Elias (2000 [1939]) charts the development from the Middle Ages of a process of increasingly rarified standards of ‘outward bodily propriety’ (Elias 2000 [1939]:55). Spitting, eating, urinating, defaecating, nakedness, sex, in fact all so-called ‘natural functions’, are described by Elias as undergoing a process of increasing ‘refinement’ that has progressively eliminated their more overt manifestations from the social scene, rendering them subject either to heavy public regulation or expression in strict privacy. Corbin (1996) traces a similar path in exploring the post-Enlightenment development of intolerance and elimination of odours associated with corporeal functions, while Laporte (2000 [1978]) traverses related ground in his study of the development from the Reformation of the privatisation of physical waste. What these socio-historical accounts reflect is a progressive concealment of bodily functions, which become ‘gradually charged with sociogenetic shame’ (Elias 2000 [1939]:190), and are either eliminated from one’s social repertoire (such as spitting), heavily modified (such as the use of handkerchiefs to ‘catch’ nasal dischar ge), or removed to circumscribed, private domains (such as defaecation). Lupton (1998:120) observes that in modern times, the loss of control of bodily emissions ‘is associated with the emotions of disgust, embarrassment, humiliation and horror’. JM and her family’s shame and loathing at her grotesque, betraying body, typifies the intolerable nature of her corporeal presentation; reflecting the generic and progressive social and individual privatisation of and sensitivity to bodily functions. The dying body, particularly as depicted in the analysed press, is beset by various losses of control at and of its borders; far from being immune from these civilizing pressures, such social forces have fundamentally shaped the development of the RDM. Volume 16, Issue 5, December 2007

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Social historians of dying and death have observed dying’s ‘progressive privatisation … post-industrialisation’ (Elias 1985:73). Death has been removed from public life, and now predominantly takes place in institutional settings. For example in Australia, while over 70 per cent of all deaths occur in those over 65 years, it is estimated that less than one per cent of these occur outside of a nursing home, hostel, hospice or hospital (Stevens et al 2000:180). While Lawton (2000) reports that a growing proportion of those with cancer in the UK die at home, she acknowledges that ‘specific kinds of demise’ predominantly take place within professionalised, institutional settings (Lawton 2000:123); namely those ‘shameful’ deaths (Kellehear 2007) characterised by significant breaches of bodily boundaries. Bauman (1993:28) contends that such dying has been ‘censored from daily life’, and that ‘the secret of the body’s relentless decomposition’ (Bauman 1993:30), has been hidden from view. In like vein, Featherstone (1991:186) observes that in a consumer culture wedded to notions of ‘comfort, fulfillment and cleanliness, the unpleasant odours and sights surrounding death become intolerable…[and thus Aries’s (1981:568) ‘dirty death’]…has to be hidden away’. In late moder nity death, particularly that characterised by extreme bodily deterioration, has been ‘sequestered’ from the public sphere (Mellor and Shilling 1993). The public display of such deaths in the media analysed was itself directed toward the eradication of these forms of dying, to be achieved via the requested deaths of individuals experiencing such corporeal disintegration. The ROTI Act 1995 saw the explicit public exposure of previously ‘hidden’ corporeal manifestations of dying. The images focused upon in the media were of a type particularly intolerable to civilised sensibilities. The ageing, rotting, wasting, oozing, malodourous, deformed, incontinent bodies of MB, BD and JM and others evoked abject horror in a society where even public flatulence is frowned upon. That these bodies were publicly portrayed as typical examples of contemporary dying, beyond the social containment of their owners, immune to Volume 16, Issue 5, December 2007

the curative efforts of medicine, and only partially ameliorable by palliative measures, demanded a social response. The modern preoccupation with sanitising death observed by Howarth (1997) in her discussion of funeral practices, with cremation reflecting ‘a concern about controlling the biological process of annihilation by preventing the slow decay of matter that accompanies it’ (Memmi 2003:653), is reflected and developed in requested death discourse. The RDM’s promotion of euthanasia and PAS taps into social norms that demand ‘solutions’ for bodily imperfections in general, and specifically for the intractable and compelling problem of the uncontainable, dying body. The contemporary nexus between body and identity further contributed to the fertile climate for modern requested death strategies.

Dying and body maintenance In addition to their grotesque and unfettered character, the media focus on the bodies of the dying conforms to the preoccupation of NSMs with the interrelated concepts of intimacy, identity and embodiment (Melucci 1994; Johnston et al 1994; Klandermans and Tarrow 1998). Indeed, the body in modernity has become perhaps the ultimate vessel for expressing identity. Giddens (1991:56) observes that ‘routine control of the body is integral to the very nature both of agency and of being accepted…by others as competent’, while Oberg (1996:707) suggests that in modern times ‘there is an increasing tendency to become one’s body’. Threats to bodily integrity that can accompany terminal illness represent an enormous challenge to the ‘ontological security’ of the modern individual (Giddens 1991:36). Confronted with a body beyond their control, they are exposed to profound anxiety at the prospect of a chaotic and finite existence, wherein their ‘aspiration toward autonomy’ is affronted (Grosz 1994:194), and their ‘very sense of self-identity’ threatened (Shildrick 1997:198). The visceral self; the body beneath the surface of the skin and predominantly below conscious awareness, becomes ‘other’ to the ‘self’ when it ‘surfac[es] at times of illness or approaching death’ (Leder 1999:205). The intersecting embodiment and HEALTH SOCIOLOGY REVIEW

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aesthetic discourses identified in Australian press representations around the workings of the ROTI Act 1995 reflect the general NSM focus on individual identity, particularly as situated within an individual corporeality. Modernity’s absorption with the body, and its general intolerance of corporeal imperfection, resonated with the RDM’s constructions of dying that assumed prominence in press reporting. In late modernity, contemporary anxiety regarding youth and symmetry of form coalesce with a consumer culture preoccupied with ‘body maintenance’ (Featherstone 1991:182), characterised by the increasingly prominent fitness, diet, fashion, cosmetics, and cosmetic surgery industries. Modern intolerance of the ‘imper fect’ or ‘asymmetrical’ body (Pitts 2000:293) informs public responses to many of the bodily manifestations of old age and illness, ranging from calls for medical reversal or repair of corporeal deterioration, to outright rejection of the ‘failed body’ (Featherstone 1991:186). In such a context, the physical deteriorations of MB, BD, and JM as detailed within the analysed data justified calls for them to be granted medical assistance to permanently arrest their corporeal decline. In an extension of the aesthetic discourse, those who successfully accessed requested death were deemed to have achieved a ‘beautiful’ death, as the halting of the visible processes of their bodily decay and their associated intolerable social situation discursively transformed them into representations of beauty. Baudrillard (1998 [1970]:139) has observed that ‘Health today is not so much a biological imperative linked to survival as a social imperative linked to status’. Such an observation helps to clarify how BD and JM, in achieving requested death and relinquishing their lives, attained or regained an admirable, desirable status: that of autonomous, responsible, ‘healthy’ citizens rejecting and halting the deterioration of their dying bodies.

Conclusion This paper has identified the combined workings of an aesthetic and embodiment discourse in Australian press during the life of

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the ROTI Act 1995. The dying body was the major focus of media accounts, overwhelmingly depicted in overt disarray. This construction reinforced the notion of dying as a chaotic state demanding the most extraordinary efforts to reassert control, namely requested death. The corporeal changes associated with terminal illness, in addition to being socially intolerable, were portrayed as fundamentally altering the identity of the person. In particular, the loss of physical boundaries characteristic of incontinence was equated with loss of personal dignity and worth. So complete is the popular contemporary association between physical integrity and personal identity that such losses functioned within the press as absolute justifications for requested death. In modern society as conceptualised by Elias (2000 [1939]), progressive standards of physical control have all but removed ‘natural’ bodily functions from the social sphere. Dying, particularly that dramatically depicted within the media, fundamentally challenges this endeavour, demanding a radical response from modern sensibilities. That the corporeal chaos of dying could be halted by the medical interventions of euthanasia or PAS, in essence reasserted the possibility of control over the body and identity of the dying person; concepts central to modern constructions of self. That dying and some of its more overt and negative physical manifestations might not be constructed as an intolerable affront to human dignity and identity, or that responses might be other than dramatic arresting of corporeal decay via induced death, did not feature prominently within press accounts of contemporary dying and death. This absence of alternative ways of constructing and responding to dying served to support RDM aims.

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Death and the body beautiful: Aesthetics and embodiment in portrayals of requested death in Australia Bauman, Z. (1993) ‘The sweet scent of decomposition’ in C. Rojek and B. Turner (eds) Forget Baudrillard? Routledge: London. pp. 22-46. Bell, A. (1991) The Language of News Media Blackwell: Oxford. Best, J. (1995) ‘Claims’ in J. Best (ed) Images of issues: Typifying Contemporary Social Problems (2nd edn) Aldine de Gruyter: New York. pp. 13-15. Chapman, S. and Lupton D. (1994) ‘Freaks, moral tales and medical marvels: Health and medical stories on Australian television’ Media Information Australia 72:94-103. Corbin, A. (1986) The Foul and the Fragrant: Odour and the Social Imagination Papermac: London. Crayford, T.; Hooper, R. and Evans, S. (1997) ‘Death rates of characters in soap operas on British television: Is a government health warning required?’ British Medical Journal 315(7123):1649-1652. Elias, N. (2000) [1939] The Civilizing Process Blackwell Publishers: Oxford. Elias, N. (1985) The Loneliness of the Dying Basil Blackwell: Oxford. Fairclough, N. (1988) Discourse and Social Change Polity Press: Cambridge. Featherstone, M. (1991) ‘The body in consumer culture’ in M. Featherstone; M. Hepworth and B. Turner (eds) The Body: Social Process and Cultural Theory Sage: London. pp. 170-196. Featherstone, M. (2000) ‘Body modification: An introduction’ in M. Featherstone (ed) Body Modification Routledge: London. pp. 1-14. Fowler, R. (1991) Language in the News: Discourse and Ideology in the Press Routledge: London. Frank, A. (1995) The Wounded Storyteller: Body, Illness and Ethics University of Chicago Press: Chicago. Gamson, W. (1995) ‘Constructing social protest’ in H. Johnston and B. Klandermans (eds) Social Movements and Culture: Social Movements, Protest, and Contention University of Minnesota Press: Minneapolis. pp. 85-106. Giddens, A. (1990) The Consequences of Modernity Stanford University Press: California. Volume 16, Issue 5, December 2007

Giddens, A. (1991) Modernity and Self-identity: Self and Society in the Late Modern Age Polity: Cambridge. Greenblatt, S. (1990) Learning to Curse: Essays in Early Modern Culture Routledge: New York. Grosz, E. (1994) Volatile Bodies: Towards a Corporeal Feminism Routledge: London. Hazelton, M. (1997) ‘Reporting mental health: A discourse analysis of mental health-related news in two Australian newspapers’ Australian and New Zealand Journal of Mental Health Nursing 62(2):73-89. Howarth, G. (1997) ‘Professionalising the funeral industry in England, 1700-1960’ in P.C. Jupp and G. Howarth (eds) The Changing Face of Death: Historical Accounts of Death and Disposal Macmillan: London. pp. 120-134. Johnston, H.; Larana, E. and Gusfield, J. (1994) ‘Identities, grievances, and new social movements’ in E. Larana; H. Johnston and J. Gusfield (eds) New Social Movements: From Ideology to Identity Temple University Press: Philadelphia. pp. 3-35. Karpf, A. (1988) Doctoring the Media: The Reporting Of Health And Medicine Routledge: London. Kellehear, A. (1990) Dying of Cancer: The Final Year of Life Harwood Academic Publishers: Switzerland. Kellehear, A. (1993) The Unobtrusive Researcher: A Guide To Methods Allen and Unwin: St Leonards. Kellehear, A. (2000) ‘The Australian way of death: Formative historical and social influences’ in A. Kellehear (ed) Death and Dying in Australia Oxford University Press: South Melbourne. pp. 1-13. Kellehear, A. (2007) A Social History of Dying Cambridge University Press: Cambridge. Klandermans, B. and Tarrow, S. (1988) ‘Mobilization into social movements: Synthesizing European and American approaches’ in B. Klandermans, H. Kriesi and S. Tarrow (eds) International Social Movement Research: From Structure to Action: Comparing Social Movement Research Across Cultures JAI Press: Greenwich, Connecticut. pp. 1-38. Kristeva, J. (1982) Powers of Horror: An Essay on Abjection Columbia University Press: New York. HEALTH SOCIOLOGY REVIEW

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Shildrick, M. (1997) Leaky Bodies and Boundaries: Feminism, Postmodernism and Bioethics Routledge: London. Stevens, J.; McFarlane, J. and Stirling, K. (2000) ‘Ageing and dying’ in A. Kellehear (ed) Death and Dying in Australia Oxford: South Melbourne. pp.173-189. Touraine, A. (1985) ‘An introduction to the study of social movements’ Social Research 52:749-787. Turner, B. (1984) The Body and Society: Explorations in Social Theory Basil Blackwell: Oxford. Turner, B. (1987) Medical Power and Social Knowledge Sage: London. van Dijk, T. (1988) News as Discourse Lawrence Erlbaum Associates: New Jersey.

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Copyright © eContent Management Pty Ltd. Health Sociology Review (2007) 16: 397 404

Avoiding death: The ultimate challenge in the provision of contemporary healthcare? ABSTRACT KEY WORDS Death, chronic disease, sociology, normal death, avoiding death, self management

The aim of this paper is to explore how the avoidance of death preoccupies the focus of most health professionals, including policy makers, in the western world, and the implications of this for the lives of people with chronic diseases. Avoiding death has become the ultimate challenge in the provision of contemporary healthcare. An implication of this way of thinking for people with chronic diseases is that their chronic disease is then positioned as something which will produce a death which could have been avoided. Such a death is then viewed as failure, not only biological, but also social. However, such failure is also positioned as a personal one as well: people did not self-manage their lives ‘properly’. Received 20 July 2007

Kay Price School of Nursing and Midwifery University of South Australia Australia

Julianne Cheek Institute of Nursing and Health Sciences University of Oslo, Norway and Centre for Research into Sustainable Health Care University of South Australia, Australia

Introduction

K

ellehear, in his analysis of the social experience of dying, remarks ‘dying is not, and never was, solely a medical challenge’ (Kellehear 2007:250). While he acknowledges that people may yearn for a good death and one that is not too early and not too late, Kellehear also says the idea of dying is almost slipping away as ‘death is being tamed so strongly by health services that it is now indistinguishable from emergency, acute and community care of the sick’ (Kellehear 2007:249-50). Building on these ideas, we explore in this paper how this desire to tame death and negate dying has Volume 16, Issue 5, December 2007

Accepted 20 August 2007

impacted on understandings of chronic diseases /chronic conditions [hereafter referred to as chronic disease] and those who have them. To explain our argument, we will use theoretical insights from the works by critical social theorists Allan Kellehear and Zygmunt Bauman as well as some of the findings emerging from our research with people with chronic diseases (see Australian Research Council [ARC] Discovery Grant). In presenting this paper, we acknowledge that there is an established body of literature on the history and sociology of death and dying. This paper is not a review of this literature. Our interest is to open up debate around dying from, as opposed to only living with, chronic disease, using theoretical insights by Bauman and Kellehear. We acknowledge the possibility that we could have used different theoretical perspectives. For example, Seale in his book Constructing Death (1998), focuses on the importance of a person being aware of their impending death and notes how taking control ‘over the manner and timing of one’s death … is one way of reserving a meaningful social existence until death’ (Seale 1998:172). Seale ar gues that being aware of dying is an opportunity for personal growth (Seale 1998:5). We do not disagree with this emphasis. HEALTH SOCIOLOGY REVIEW

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We also acknowledge work by Walter (e.g. 1994, 2003) and his reference to a new art of dying. Walter says that a challenge today is how to die well from the slow degenerative diseases of old age (Walter 2003:219). While learning how to die well with chronic diseases is not age specific, we agree with Walter who notes that in palliative care, encouraging individuals to ‘write their own scripts for dying, as they do for living’ (Walter 2003:218), is an important focus for health professionals to support. In our paper, we question whether health services for people with chronic disease are denying dying (cf: Kellehear 1984) and the implications that emerge as a consequence. We present an argument why health professionals might need to also focus on supporting people with chronic disease to live as healthy as possible while dying and argue that this perspective is different to ‘successfully living with chronic disease’. Both perspectives need to influence the role of health professionals. When used as an indicator of success, ‘successfully living with chronic disease’ as opposed to dying from it, we argue creates another version of the too early death. For those who succumb to the too early death, new categories of potential shame for those unable to live with that disease, or tame the ever present threat of death from it, emerge. For example, most contemporary health initiatives of western governments are premised on the view that chronic diseases can be prevented by individual people and as such death can be avoided if only people conformed to behaviours that are promoted as enabling or producing a normal/acceptable death in western societies. Avoiding death, or at least avoiding death until such time that it is accepted as being appropriate for a person to die, has become the ultimate challenge for contemporary health care. We now turn to describing why we consider a focus on avoiding death from chronic disease dominates the provision of healthcare in western countries.

Preventing chronic disease In the western world, within the context of contemporary healthcare, the prevention of chronic disease preoccupies the focus of most health care professionals including health

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promoters and policy makers. For example in Australia, the government has introduced a National Chronic Disease Strategy (National Health Priority Action Council [NHPAC] 2006) and an Australian Better Health Initiative (DoHA 2006). These initiatives are about ‘strengthening the focus of the health system on prevention and health promotion, and management of chronic disease’ (DoHA 2006) given the view that ‘many Australians suffer from chronic illness, which is a growing problem facing the health system as the population ages’ (DoHA 2006). These initiatives have been premised on the view that evidence shows lifestyle interventions can prevent or delay the onset of chronic diseases through action on lifestyle factors such as poor diet or insufficient exercise (DoHA 2006). One conclusion from such thinking is that people living with chronic disease would not have died/will not die if they had acted, or do act, differently. The assertion that lifestyle interventions can prevent or delay the onset of chronic diseases enables specific actions to be promoted as necessary, and part of acting responsibly, in order to prevent chronic disease thereby avoiding a ‘premature’ death. For example, the WHO states that with increased investment in chronic disease prevention, it will be possible to prevent 36 million premature deaths (WHO 2005). The concept of a ‘premature death’ is only possible if the human body is considered as a ‘stable point of reference’ capable of being changed in pre-determined ways to bring about desired outcomes (Bauman 1992; Price 2006). Living with, and dying of, chronic disease as a consequence becomes a measurement of how a person has lived and lives their life. For western governments, this measurement if violated in terms of what is normal with respect to death (i.e. not premature) becomes an indicator of the ‘shameful’. This is because the premature death comes to be thought about as an indicator that the life is/was lived in such a way that the person brings/brought themselves closer to a death that could have been, and should have been, avoided. Living with chronic disease has become a new version of the assumption that there can be a too early death. Consequently death from chronic conditions is transformed into a new version of

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the preventable and using Kellehear’s words, therefore potentially shameful death. Acceptance of the possibility of an ‘accurate diagnosis’ of medical conditions, conditions that can then be named and promoted as being preventable, makes it not only possible to speak of avoiding death, but also of individuals being irresponsible if they die of such conditions because such a death could be prevented until that death is able to fit the parameters of the acceptable. But it is not only the individuals with chronic diseases that are affected by such thinking. Health professionals and understandings of their practice are as well. Kellehear’s work provides useful insights into the way the taming of death has become a focus for the practice and understandings of modern medicine. Such a focus on the desired taming or at least management of death in terms of when and why death occurs, applies we argue to practices in relation to the prevention and management of chronic disease. Thus we see the emergence of prescribed and pre determined ways of thinking and acting in relation to how health professionals should think about, and engage with their ‘patients’ in, first the prevention and when that ‘fails’ with the onset of the condition, the management of chronic disease. These predetermined roles are made evident within documents like the National Chronic Disease Strategy (National Health Priority Action Council [NHPAC] 2006) that talk of principles of self management that ‘must be firmly embedded’ in the health system and a person will ‘follow a treatment or care plan’ and ‘adopt a lifestyle that reduces risks’: principles promoted in the context of avoiding an unnecessary death. Human intentionality is positioned as the cause of death from chronic diseases displacing a focus on the underlying pathology as the cause. In this way of thinking, disease is construed as an individual event and an occurrence brought about by a cause that could have been avoided (Bauman 1992:20). Consequently a strong view promoted by western governments and organisations like WHO is that to live longer, requires individuals to have a management plan to direct them how to self care so as to prevent chronic disease (not die). Volume 16, Issue 5, December 2007

Resisting/postponing/avoiding an unsuitable death: self-care management plans Somewhat ironically, it is understandings of death, rather than health which provide much of the rationale for self management plans pertaining to chronic diseases. This is not only in terms of the overt purpose of such plans to avoid a death not considered suitable or normal, but also in terms of death providing the information on which the plans are based. Adapting Bauman (1992), precisely because death occurs as a result of chronic diseases, and because there have been technological improvements in healthcare, for each particular case of death, new understandings about life and living with chronic disease have been generated. Death thus provides opportunities to learn more about the cause and effect of particular actions by individuals with chronic diseases, and these can then be translated into understandings and pronouncements about acts that can avoid death. The view that has been subsequently promulgated and incorporated into health care practices such as the self management plan is that death ‘can be resisted, postponed or avoided altogether’ (Bauman 1992:5). The self care management plan charges the actors, that is those people with a chronic disease and the health professionals they interact with, with the responsibility for performing set tasks. These management plans are positioned as rational, logical strategies. The task is for a plan to be identified and agreed upon by health professional and health consumer. It is assumed that those behaviours needing to be changed can be, and will be changed, premised on assumed understandings by health professionals of how best to care for a person with a chronic disease in order to avoid death. The prescription, implementation and maintenance of these plans is directed by health professionals, specifically medical officers, thereby attempting to maintain the premise of medicine as being ‘in the driver’s seat in terms of supplying and shaping our health experiences’ (Kellehear 2007:156). While this approach will not bring about the cessation of either the chronic disease itself, or the fact of a person actually having to live with HEALTH SOCIOLOGY REVIEW

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chronic disease (chronic disease cannot be cured), it is assumed that it is possible to identify a plan about what behaviours can be changed so as to minimise the burden both on the individual, and on a nation from those individuals, living with chronic disease. The self management plan is premised on the assumption that it is a ‘given’ that it is the behaviours of a person with a chronic disease that needs changing. This then requires all persons involved in the prescription and implementation of self-care management plans to act in certain ways, and not others, within the encounter between them designed to determine and structure the plan. Such an encounter is often referred to as a consultation between health professional and person with the chronic disease. It warrants further exploration in terms of what it can tell us about how resisting/postponing/avoiding death is constructed in terms of the management of chronic diseases. We will use the research findings from a study designed to open up to scrutiny the perception of the consultation between health professional and health consumer as a convenient ‘package’ for a management strategy. In our study, the consultation between people with chronic disease and health professionals was understood both as a circumscribed event and as a social space. Rather than focus our attention on the circumscribed nature of the event (for example time, location, funding, content aspects that are part of a consumer society), we focused on the social space that is the consultation.

Exploring the ‘social space’ that is the consultation With colleagues we have recently completed a study designed to investigate how consultations between health consumer and health professional can ensure that the complex health and social care needs of people with a chronic disease(s) are met (see ARC Discovery Grant). Most prior research in this area has focussed on how to improve the consultation, rather than challenging how the consultation process itself is given meaning, and actively negotiated. Consequently, within literature there are calls for more effective communication skills (Lehrer et al 2002; Keeling et al 1996;

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Stewart 1993), improved health professional education (Funnell and Anderson 1999), and increased numbers of follow-up visits (Keeling et al 1996). Our argument was that these will have little effect if the self-care management plan developed by a general medical practitioner [GP] does not take into account what the health consumer desires, believes in, or is capable of achieving. Each time a person with chronic disease and a health professional comes into a consultation, we understand that this space is circumscribed by time, location and funding models. But because it is a social space, these participants do not enter an empty/neutral social space; there is a past and a future as a diagnosis of chronic disease sets up the need for ongoing contact between health consumer and GP. This includes whether the person with the disease shares the goal of postponing/avoiding/resisting death and also is agreement with understandings of how this will/might be done. We conducted interviews and focus groups with adult people with asthma and health professionals (specifically general medical practitioners, nurses, general practice staff including allied health staff, professional associations aligned to asthma and chronic conditions more generally) together with seeking their opinions through self-report surveys and literature reviews. Our focus was on exploring what they hoped or desired when they met/visited a GP to discuss a chronic condition and its management and the same for GPs in terms of what they hoped and desired when people met/ visited them in their role as a GP. We also explored their experiences asking them to recount their meetings/visits; what factors influenced this experience(s) and why, including what their perceptions were in view of their expectation and experiences and how they think it is best to influence, shape, inform and support all involved. We then linked these expectations, experiences and perceptions to viewpoints of other health professionals who work in general practice and consumer and professional organisations involved in asthma management through focus groups. As a National Health Priority, it has been established that asthma is a common chronic disease requiring the development of a long-term partnership with

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health professionals and a strong focus in its management has been the need for the development of self-care asthma management plans. What we found was that how ongoing contact (consultations between health consumer and health professional) is structured (until next time), is the product of each participant’s capacity to give recognition to ‘knowing the person better’ coupled with how they give recognition to ‘who knows best’. That is, how any individual thinks about giving recognition to ‘knowing the person better’ + how any individual thinks about giving recognition to ‘who knows best’ = how any individual shapes ongoing contact, including the resources and supports any individual can/will access. Table 1 provides an overview of recurring themes emerging from our data around the organising construct of ‘giving recognition’. Our findings reveal that from the perspective of participants, ongoing contact has minimal if any focus given to the complexity and ambivalence that is created because people with a chronic disease have no option of cure; there is no recognition that they are dying. While few participants specifically talked about self-care management plans, for GP participants, the following excerpts of transcripts identify that their focus is on doing whatever was necessary so that they could tame/control the chronic disease and that this way of thinking then frames how they negotiated the social space. GP1:320 Yes, I think, in that sense, you try and make people … yes you’re trying to alleviate the fear associated with conditions

and you’re also trying to make them realise that an improperly diagnosed condition is in some ways probably more to be feared than a properly diagnosed one. GP3:241 So how do I negotiate with a patient? I suppose first of all I find out what they want. Why they’ve come in and what they want to achieve ... You’ve got to find out what the triggers are to try to get them to have the best lifestyle choice for their health, whether it’s taking medication or whether it’s stopping smoking and you can use that as leverage to sort of go towards where I think they should for their health. Find out what they know. Find out what they’ve used before. Find out what they’ve gleaned from their relatives because often there’d be a family member who’s got asthma. I’ve got one who’s actually got a best friend who died from asthma, so those sort of pieces of information are interesting to know so that you can gear the consultation to suit them. GP4:202 We have some people very dominating. They say they know what to do with their asthma, they know what’s best. I will listen to their opinions and sometimes if it’s not too bad I will say to try that first and if that doesn’t help we can do this. Patients with asthma tend to handle their own asthma for a long time, those are the people who have their own opinions, very much so. They will say that they will take their medicine when they are like that and I will say use your puffer first. They say the puffer takes too long to work, ‘I know my asthma disease, I will use

Table 1: The consultation as social space: from the viewpoint of all participants Organising construct: Giving recognition Knowing the person better: both consumer and health professional

Who knows best?

Until next time

It is more than knowing what is ‘wrong’

Giving the person authority to decide

Structuring the business activity

Respecting the boundaries

Acknowledging and valuing expertise of yourself and others

Accepting and acknowledging the need for ongoing contact

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Kay Price and Julianne Cheek the tablets’. I will say that it’s fine but if it doesn’t work you really have to come to us. They want to be in control and they want to tell us they know everything, they know that and that and those people I don’t find hard to handle, all I have to do is just listen to what they have to say about the asthma and just correct some of the things if I think it’s not right, it’s a bit better if you do it this way, no problems. G P 8 : 9 0 Biggest obstacle is patient motivation. There’s no trouble in organising and making the action plan and it’s no trouble in getting the patient to agree to the action plan. The two troubles I see is (a) in general practice maybe not quite enough time to give them the full explanation as to why they need the action plan but I try and talk with them because I like to spend one good session with them, then it saves further future problems, the other obstacle, apart from their not understanding it, is them not carrying that out. That goes down to their own reasons and I’ve yet to master the reasons of motivating people, how to motivate people because that seems to be what’s needed to keep them up. One thing that does work, to some extent is if you keep reviewing them. If you keep getting them to come back to report to you, to see how they’re going, it does make them perform better, it does make them more interested. The only other thing that I do sometimes if I feel like, it depends on the consult, if I get them to tell me what the plan is, because if they start to take a little bit of ownership on this issue they start to become better patients towards that management. GP12:149 I guess my ultimate goal is to try and impress on people that the best way of judging how well they’re controlling their asthma is how many times they need to use the reliever.

In relation to health consumers, there were participants who said they negotiated the consultation so as to control what their GP did as the following excerpts from transcripts reveal.

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•

•

•

•

•

‘Just give me the prescription thanks. And I’m out of here. There was nothing I particularly wanted to talk about’ (Consumer [C] 4:289-290). ‘I got listened to, that was an important thing… my expectations were met definitely because he went through how I was feeling …’ (C6:177-181). ‘The two [doctors] that I’ve been to have been quite compliant to what I want, happy to go along with whatever I’m saying’ (C10:328-330). In regard to what information a person might share with their GP, one participant answered ‘Nothing … I need another script. That would be it’. Does the doctor try to discuss the prescription with you? ‘No’ (C 5:30-39). ‘I really just go to get my scripts’ (C16:168).

We acknowledge and have been informed by health professionals and health consumers that where a person with chronic disease or a health professional ignores disease-related changes that this ignoring may actually contribute to disease progression for people with chronic disease. For example, it is a widely held view that integral to asthma management is the use of specifically prescribed medications to prevent the occurrence of an exacerbation of asthma. Therefore we can accept that as a consequence of a chronic disease, prescribing and taking medicines may be a part of what having a chronic disease is about. The point we take from this though is that when interactions between health professionals and people with chronic disease are structured only as an occasion for receipt of a prescription or a predetermined activity based on what is considered part of a management plan for chronic disease then this way of thinking positions GPs as experts and shapes ongoing encounters to focus solely on controlling/taming the chronic disease. As such, it is questionable how GPs can assist people with chronic disease to change behaviours so as to minimise the reported burden from chronic disease. The following examples of excerpts show how some health consumers as participants defer to the expertise of the GP seemingly allowing them to control their chronic disease. Volume 16, Issue 5, December 2007

Avoiding death: The ultimate challenge in the provision of contemporary healthcare? C1:39 [Answer] Well I also have an issue with … I drink a lot of soy milk because I’ve got arthritis and I can’t drink milk, I drank soy milk and I found if I drink soy milk I can mix it up with yoghurt and after I’d had a few glasses of that I felt that that also was making me wheeze but he did away with that, he said that he didn’t see that happening at all. [Question] When you say that he didn’t go along with that, what do you mean? [Answer] Well, he sort of passed it off and I felt at the time that I was seen as being rather simple. So really I think I left the office that day, I wasn’t happy with it. [Question] So what you’re saying is that when you told the practitioner what you believed, what was happening to you, you said that they didn’t relate to that or take it on board? [Answer] No. He didn’t seem to relate to that and I thought ‘Oh well’, I come out thinking it was one of my silly ideas. [Question] Why did you think that? Why did you think that was just one of your silly ideas? [Answer] Oh, well I’ve known him for a lot of years and overall he’s a very, very good doctor. So perhaps I felt, he’s the doctor and it’s just me. C10:223 The follow up, the follow up of what you’ve told him, treatment if it’s necessary. If it’s something that you’re sort of stressing about, I don’t mean stressing in a strong term but if you’re worried about and you can talk to him and he will assure you that it’s nothing to worry about or if he thinks it is, if he thinks there’s a problem there he’ll follow that problem through and treat it and discuss it with you. That’s what I think is a good consultation; that you come out feeling that the expert has listened if you like. He is the expert, we’re not expert, we’re the lay people, we’ve got to give him our symptoms before he can diagnose anything and from that he does diagnose and clearly do that. We highlight again the point that if recognition was also given to people dying from, as opposed to only living with, chronic disease, we argue that this sets up a possibility for a focus on the social and interpersonal needs

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of those people as well as support to control their chronic disease. In saying this, we are reminded of what Kellehear says: ‘Dying cannot be made good or well managed if there is no recognition of dying’ (Kellehear 2007:227). In our findings there was no recognition given to people dying from chronic disease. If there was this recognition, then the next excerpts of views of health consumers that for us reveal the complexity and ambivalence that is created because people with a chronic disease have no option of cure, we argue would have been focussed differently. C9:270 ... you go along sometimes and you sort of feel you are wasting his time, this is not a really heavy problem and you think, look I’ve got a bit of asthma and you don’t make a big deal of it. You just get on to the next I don’t know how long and you’ll be ok. I’m not making any great emphasis that I’m worried about it but then maybe the G.P. should be saying, ‘Look it really is more serious than a nuisance to your lifestyle. C11:252 Even if there’s something that there’s nothing you can do about she’ll still explain to you what’s with it and why it’s important. She’s good like that. That’s what I hate with doctors when you go in and they say, ‘Oh don’t worry about that, you’re fine’. Well I’m not fine because if I was fine I wouldn’t be here. Who’s going to go to the doctor for nothing? I suppose some old ladies get lonely but generally …

Giving recognition to the fact that people are dying because of chronic disease does not have to be construed as a negative approach to providing healthcare. Adapting Kellehear, if health professionals and health consumers recognised dying from chronic disease as part of dying overall, then this gives health professionals opportunity to provide support to health consumers to focus on how together they can ensure a well-managed death. This support does not exclude minimising ill-health but also includes understanding how to support or ‘to give them time to participate with others in their own preparations for death’ (Kellehear 2007:179-80).

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We position the opportunity to provide people support because they understand they are dying as a positive approach to working with people with chronic disease. To give people with chronic disease the necessary support to live while dying we argue requires health professionals to approach a diagnosis of chronic disease not necessarily always about or centred on avoiding/postponing/ resisting death. Rather it is about the person and the focus is on them not on dying or not dying. Even a cursory review of health related literature suggests that health professionals consider they attend to the needs of the person not only their disease.

Summary In this paper we have sought to trouble how a focus on avoiding death dominates the provision of healthcare in western countries and how excluding a focus on dying is evident in the way the management of chronic disease is talked and thought about. It is also apparent from the views of people with chronic disease and health professionals in the research study referred to when they talk about the idea of the consultation and what it is for and about in relation to chronic disease. This exclusion we consider to be, as we have suggested, because for people with chronic disease, ‘living with chronic disease’ has become a measurement being used by policy makers that they did not self-scrutinise, self-critique or selfcensure themselves: they made the wrong choices in life. Policy makers promote like Bauman says, ‘liquid life’ that means ‘constant self-scrutiny, selfcritique and self-censure. Liquid life feeds on the self’s dissatisfaction with itself’ (Bauman 2005:10-11, emphasis in original) Consultations between health consumer and health professionals, as much as self-care management plans, have become positioned by western governments as the way or ‘how to’ for them to self-scrutinise, self-critique or self-censure themselves. The ultimate dissatisfaction that is attempting to be created is dissatisfaction with living’s ultimate outcome: death. Restating Kellehear, the idea of dying is almost slipping away when the focus is on taming death/ preventing or controlling chronic disease (Kellehear 2007). The fundamental tension of course in all of this is that death cannot be avoided.

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References Australian Research Council [ARC] Discovery Grant: DP0452805 funded 2004 awarded to University of South Australia. 2004 – 2007 available at http: //www.arc.gov.au/ncgp/dp/ dp outcomes. htm Bauman, Z. (2005) Liquid life. Polity Press: Cambridge. Bauman, Z. (1992) ‘Survival as a social construct’ Theory, Culture and Society 9(1):1-36. Department of Health and Ageing (2006) Australian Better Health Initiative available at http://www.health.gov.au/internet/wcms/ publishing.nsf/Content/feb2006coag03.htm. Funnell, M.M. and Anderson, R.M. (1999) ‘Putting Humpty dumpty back together again: Reintegrating the clinical and behavioural components in diabetes care and education’ Diabetes Spectrum 12(1):166-71. Keeling, D.I.; Price, P.E.; Jones. E. and Harding, K.G. (1996) ‘Social Support: Some pragmatic implications for health care professionals’ Journal of Advanced Nursing 23:76-81. Kellehear, A. (2007) A Social History of Dying Cambridge Cambridge University Press: New York. Kellehear, A (1984) ‘Are we a ‘death-denying’ society? A sociological review’ Social Science and Medicine 18(9):713-723. Lehrer, P.; Feldman, J.; Giordino, N.; Song, H. and Schamaling, K. (2002) ‘Psychological aspects of asthma’ Consulting and Clinical Psychology 70(3):691-711. Price, K. (2006) ‘Health promotion and some implications of consumer choice’ Journal of Nursing Management 14(6):494-501. Seale, C. (1998) Constructing Death: The Sociology of Dying and Bereavement Cambridge University Press: Cambridge. Stewart, M.J. (1993) Integrating Social Support In Nursing Sage: Newbury Park, CA. National Health Priority Action Council (2005) National Chronic Disease Strategy Australian Government Department of Health and Ageing: Canberra available at http://www. health.gov.au /internet/wcms/publishing.nsf/ Content/pq-ncds-strat Walter, T. (2003) ‘Historical and cultural variants on the good death’ BMJ 327(7408):218-220. Walter, T. (1994) The Revival Of Death Routledge: London. World Health Organisation [WHO] (2005) Preventing Chronic Diseases: A Vital Investment World Health Organization: Geneva available at http://www.who.int/chp/chronic disease report/en/index.html Volume 16, Issue 5, December 2007

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Practical bereavement ABSTRACT

KEY WORDS Sociology, bereavement, grief, cemetery, visitors, mourning customs

It is well recognised that bereavement deals a significant impact on all individuals and societies, and yearning to be with a recent decedent is a common and almost universal grief response. How we strive to mitigate our loss by maintaining a sense of being in the presence of our loved one is not so well appreciated, yet this elicits perhaps the most evident and popular practical response among the recently bereaved. Although over thirty-three million visits are made to Australian cemeteries each year, understanding this behaviour and meeting the real needs of these visitors have attracted little consideration, even among those responsible for managing and providing such facilities. This paper draws on the author’s twenty-four years’ experience in the operation of small and large, provincial and urban cemeteries, and national sociological field research into personal and social values of the cemetery or memorial park. Quantitative studies involving over 3,000 cemetery visitors throughout Australia furnished vital generalisations, and complementary in-depth qualitative investigation of over two dozen cases identified personal values of visitation to mourners within different social and cultural contexts. This paper presents a summary of key findings. To literally millions of recently bereaved Australians the cemetery provides a vital focal point for remembrance of the deceased, with the grave or memorial site becoming a crucial locus for working through personal grief. Received 11 March 2007

Philip Bachelor Australasian Cemeteries and Cremetoria Association Australia

Introduction

W

ith around 130,000 annual deaths, an estimated six million Australians experience the loss of a family member each year. Many of these mourners contribute to around 33 million visits per annum to some 2,300 cemeteries (Bachelor 2002:11). On average, around 90,000 mour ners visit Australian cemeteries each day. Some are visiting recently deceased friend’s memorials, but the vast majority are attending graves of close family members. They mainly visit within a few years of the death to help control personal grief. Less than a quarter of all cemetery visits are to attend a funeral and Volume 16, Issue 5, December 2007

Accepted 25 August 2007

very few visits are found to occur for other reasons, such as leisure or heritage interests. Cemeteries are virtual hives of activity by the recently bereaved and are among the most visited places in Australia. Some large urban memorial parks, with over two million annual visitors, are evidently more popular than most major tourist attractions (Bachelor 2001:43; 2002:11). Though bereavement is well recognised as the most psychologically and socially significant life event that most people ever experience, little consideration has been given to cemetery visitation; perhaps the most significant practical bereavement behaviour of most mourners and what is revealed as a crucial component of satisfactorily working through grief for millions of bereaved Australians. Throughout the 1990s, the author coordinated complementary quantitative demographic visitation studies at major cemeteries throughout Australia, conducted HEALTH SOCIOLOGY REVIEW

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extensive naturalistic observations at Australia’s largest and most visited cemetery, and undertook in-depth qualitative ethnographic investigation with diverse mourners. The research was supervised and conducted in association with Charles Sturt University’s Johnstone Centre for Social and Biophysical Environmental Research, and was supported by the Australasian Cemeteries and Crematoria Association and over a dozen participating cemetery authorities, which collectively hosted almost 30% of Australian funerals. The quantitative study employed a highly structured questionnaire with some 3,000 respondents visiting major cemeteries in all States (and the Australian Capital Territory), while the Bereavement Study involved a series of semistructured in-depth interviews to reveal qualitative personal experiences from mourners of diverse social and cultural backgrounds, and representing various relationships. Naturalistic observations included unobtrusively observing the natural behaviours of thousands of visitors, recording the quantities of visitors of each sex visiting graves and memorials, the durations of these visits and numbers of mourners participating in funerals. Methodologies employed are detailed in Bachelor 2004. The term ‘grief work’, first proposed by Freud (1917), remains an important concept in recent bereavement literature (Worden 1982; Attig 1996; Parkes 1996). And according to Worden, the first task of mourning is to accept the reality of the loss. In the Australian qualitative bereavement study, the funeral was reported by several informants as being of great importance in this respect. However, a significantly greater proportion of cemetery visitors evidently constitute mourners working through Worden’s subsequent tasks (i.e. working through the pain of grief, adjusting to an environment in which the deceased is missing, and emotionally relocating the deceased and moving on with life). These tasks, at least in some cases, correlate to self-reported, initiallyfrequent then diminishing cemetery visitation. Parkes also notes that grief work includes an attempt to make sense of the loss, to fit it into one’s set of assumptions about the world (one’s

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‘assumptive world’) or to modify those assumptions if need be (Parkes 1996:78). He further suggests that attempts to make sense of what has happened ‘would seem to be one way of restoring what is lost, by fitting its absence into some superordinate pattern’; but considers, if these attempts do not succeed ‘then the preoccupation will increase and may indeed become obsessive’ (Parkes 1996:78). The Australian studies indicate that failure to make sense of the loss of a significant other (particularly a child) is a significant factor in much frequent cemetery visitation. One’s assumptive world may be modified to incorporate concepts of the decedent in a fitting afterlife, and to facilitate meaningful communication with them. Such afterlife may include a pre-existing notion of heaven, or become some other spiritual world (such as one’s deceased child accompanied by others in a metaphysical playground: as reported by a number of bereaved mothers who regularly met at one cemetery). Concepts of an afterlife are evidently adopted or modified (as suggested by Parkes 1996) to suit the needs of the mourner. As one distressed grandmother reported ‘That’s how I comfort myself. I don’t think about whether it’s true or not’ (Bachelor 2002:69).

The modern cemetery environment The milieu, or social environment, of cemeteries has clearly evolved over many years in response to changing health, religious, political, technological, social, cultural, and economic concerns. And while some of these changes have ushered in significant improvements for cemetery clients, others have been imposed to meet the interests of external parties without due regard for the needs of the bereaved. The world’s earliest known cremation was that of a young Aboriginal woman at Lake Mungo in southwest New South Wales, approximately 26,000 years ago (Flood 1989:44; White and O’Connell 1982:37). But cremation was not a unique generic practice among the first Australians. Indigenous funeral practices varied both spatially and temporally. Significant changes, including vertical and prone entombment and a variety of techniques, are Volume 16, Issue 5, December 2007

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evident from burials spanning 7,000 years at one excavated cemetery at Roonka, South Australia (White and O’Connell 1982:103). Disposal methods of some Aboriginal groups included depositing their dead in bark resting places, hollow tree trunks, simple and elaborate earthen burials, and also cremation (Chambers 1990:ix; Lehman 1997:229). Western European attitudes to death and the place of the cemetery have changed considerably over recent centuries, particularly since the late eighteenth century (Etlin 1984:24). Modern public cemeteries took their place alongside what had been almost exclusively the lot of churchyards or private properties. Australia’s first European cemeteries were initially small and conveniently situated close to early settlements. Then population growth, industrialisation and urbanisation subsequently saw many cemeteries absorbed by urban sprawl. It soon became necessary to establish larger new cemeteries further from urban centres. From 1820 there began a move away from the undivided public graveyard to several denominational areas in one cemetery. Then from 1846, there commenced a transfer of responsibility for the administration of cemeteries from the churches to appointed trustees (Griffin and Tobin 1997:65). In 1862, discriminatory compartmentalisation of cemeteries by religious denominations was being contested in Australia and debate on this issue continued for many years (Nicol 1997:52). And by the early 1890s, non-sectarian memorial parks were being developed overseas as a more open ‘democratic alter native’ to church cemeteries and ‘denominationally-segmented’ public cemeteries (Keister 1997:21). However, most of Australia’s twentieth century cemeteries were still laid out in religious divisions and have continued to operate in this manner. Significant change in Australian funeral practice followed the legalisation of cremation, which did not come about quickly or easily. The cremation movement was initiated in Europe in the late nineteenth century, and while cremationist organisations vigorously promoted their preference, it was generally considered ‘unVolume 16, Issue 5, December 2007

Christian’ or ‘heathen’ by many within Australia’s predominantly Anglo-Celtic Christian community. Then an 1886 edict of the Roman Catholic Church officially condemned cremation, and this remained the Church’s official position until 1963 when its opposition was finally rescinded (Zelinka 1991:48; Sagazio 1992:15; Ata 1994:48). In the meanwhile, an ‘illegal’ cremation conducted on the beach at Sandringham in Victoria, in 1895, received considerable press attention (Zelinka 1991:48; Chambers 1994:19; Nicol 1994:186). The polarisation of public opinion at the time is evident through highly contrasting news reports of the event. While the Melbourne Age described in embellished detail, ‘a most ghastly spectacle’, the Adelaide Observer reported the same event as a ‘decent and orderly’ ceremony (Nicol 1994:188). The perhaps more progressive South Australians enacted Australia’s first cremation bill in 1891, but it was still to be eight years before the new Act was actually put to effect. European and American garden cemeteries provided inspiration and influenced design and development of early Australian memorial parks, including Perth’s Karrakatta, Melbourne’s Necropolis and Fawkner, and Adelaide’s Centennial Park (Nicol 1994:266). Then as the popularity of cremation grew, ultimately to surpass that of burial, memorial park landscapes were further enhanced with the development of ornamental gardens as settings for cremation memorials. During the Great War, Australian casualties were buried overseas where they had died. However, the proposal for a perpetual memorial cemetery for war dead was first raised at this time (Liveris 1999:89). Then, during the Second World War, special memorial cemeteries were set apart from civilian burials for war dead and eligible veterans. War cemeteries were ultimately established in each state capital and are now maintained by the Office of Australian War Graves. Long-established Australian funeral practices have been subject to significant cultural variation. In-ground concrete vaults and their more

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elaborate monumental structures have changed the face of many cemeteries over some decades, but particularly since the 1980s. Vaults have been very popular among the wave of post-war southern European immigrants and also among some people of Chinese backgrounds. But aboveground crypt burial was what many of these families really wanted. Above-ground entombment in individual family mausolea was provided at Sydney’s Rookwood Catholic Cemetery prior to the twentieth century and elsewhere following the Second World War. Large community mausolea were introduced into Australia in the mid 1990s, and have subsequently become quite popular, usually providing hundreds or even thousands of crypts within one building. These large multi-level mausoleum structures are further changing the current face of major cemeteries and ushering in even more recent variation in contemporary cemetery entombment and memorialisation. But most cemeteries are not recent constructs planned to meet any identified needs of users and legacies of pre-modern sanitary disposal concerns and convenience of maintenance remain evident. Nevertheless, in recent years the landscape values of some memorial parks have received greater attention towards enhancing their sense of beauty, peace and tranquillity sought by so many grieving visitors. And cemeteries continue to reflect respective notions of death, nature, individualism, family, community and commemoration worthy of a distinctive national historic consciousness (Linden-Ward 1986:2). Not only do they reflect historical and contemporary cultural and social diversity, but cemeteries also represents individual and collective expressions of grief and commemoration, providing an important link between the dead and their survivors.

Why people visit cemeteries Extensive studies of cemetery visitation throughout Australia suggest this behaviour is a crucial component of satisfactorily working through grief for millions of bereaved Australians. More than three quarters of all visits follow the funeral of a close family member (Bachelor 2004:49).

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Other 0.2%

Friend 4.6%

Parent 38.0%

Other Relation 3.5% Grandparent 6.1% Br./Sister 6.2% Spouse 30.3%

Son/Daughter 11.1%

Figure 1

Proportions of visitors by relationship of decedent [Source: Bachelor 2004]

The graves most visited pertain to parents, spouses and children, and they are visited more frequently shortly after the respective death (see Fig. 1). Within months visits typically decrease to special occasions. Common activities include placing flowers, maintaining the grave and talking to lost loved ones. Some mourners cry or pray or undertake other personal rituals. Younger people, especially males, are less likely to be encountered in a cemetery. Frequent visitors are typically female, mature and most likely to be of Italian-Catholic or Greek-Orthodox families. Most mourners report that they visit graves and memorials for at least one of three principal reasons (Bachelor 2004:97). The first reason is to fulfil a perceived obligation or duty (which may relate to the decedent, the family, God, or even to the expectations of others). And this sense of duty can be strong enough to compel mourners to go to great lengths to be at specific places on significant dates and times. The second principal reason is to facilitate progressive independence from a significant relationship. Permanent separation by death is usually too difficult to accept all at once. So, gravesite activities (such as talking to the decedent, including them in special anniversary days and leaving gifts) are very important to many visitors towards sustaining an otherwise diminishing emotional bond. And a sense of the decedent’s presence can provide appreciable solace from the common early-bereavement anxiety of separation. The third principal reason for visiting is specifically to seek solace from personal grief, including relief from feelings of guilt. Many mourners report a sense of guilt relating to a Volume 16, Issue 5, December 2007

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sense of failure to fulfil a perceived obligation to visit or to feelings of neglecting the relationship. Other less-commonly reported reasons for visiting the cemetery include taking or accompanying a principal visitor, being in the vicinity with time to spare, inspecting grave developments such as a new monument, and habitual visitation (such as every week after Mass). In working through grief, the commonly perceived need to visit usually diminishes, so that most mourners find abatement of visitation correlates to subsidence in intensity of grief emotions. But not all mourners visit a cemetery. For various reasons around fifteen per cent don’t visit at all. Major reasons for non-visitation include the remains not being interred in a cemetery, inability to travel to the cemetery, repression of grief, religious restrictions, and no perception of any need to visit. The most popular memorial or gravesite activity among mourners of diverse faiths and relationships to decedents is placing flowers. And over ninety per cent of cemetery visitors report they like to see that the grave or memorial has fresh flowers whenever they visit. The next most popular activity among diverse visitors is maintaining the grave or memorial. Just as placement of flowers symbolises a gift, so maintenance of the site represents an act of continuing care for the decedent. Almost seventy per cent of visitors report that they undertake some regular or occasional grave or memorial maintenance activity. Also popular across various faiths and relationships is talking to the decedent at the grave or memorial site, and this usually requires some personal concept of an afterlife. A majority of cemetery visitors report that they regularly or occasionally talk to the decedent at the gravesite (Bachelor 2004:110). These ‘conversations’ include renewal of acquaintance by saying ‘hello’, assuring the decedent that they are missed and not forgotten and updating the decedent on recent and current events. Visitors of some faiths also request divine intercession on behalf of family members. Moderately common activities include crying and praying. Crying is reported more during early stages of grief, among females, and Volume 16, Issue 5, December 2007

particularly those of southern European origin. Graveside prayer is a moderately common practice among some religious visitors. Other activities less frequently reported include performing various religious rites, kissing the memorial, feasting or drinking with the decedent, placing mementos and gifts on the grave, standing silently at the memorial site, talking with other mourners, and conjuring up images of the decedent. For many mourners, cemeteries are venues of crucial social support and assistance towards grief mitigation through mutual sharing of personal bereavement experiences with other visitors. Mothers and non-English-speaking immigrants, in particular, commonly report peer support to be more helpful and/or desirable than professional counselling (Bachelor 2001:45; 2004:152). Most mourners require cemeteries to cater for their practical, emotional and cultural needs. The initial practical need is for the orderly disposition of the bodily remains of a family member. Emotional needs include an appropriately dignified funeral, an opportunity to commemorate the decedent so that recognition will remain through and possibly beyond the mortal life of the mourners, and the provision of an appropriate locus for revisiting memories and working through grief. Cultural needs include opportunities to observe traditional and contemporary family, community, religious or spiritual practices in the funeral and in memorialisation and on-going visitation. The cemetery holds great personal significance, including cultural, social, heritage and remembrance values to most Australians. But its sense of sacredness is the most commonly reported value. And while it may not be as sacred as the church to everyone, the cemetery is considered a place to be venerated even by most non-religious mourners.

When mourners visit The frequency with which mourners visit graves and memorials is found to relate to the degree of emotional attachment to the decedent, the duration of bereavement, family ethnicity, and choice of burial or cremation (Bachelor 2001:44; 2002:12). HEALTH SOCIOLOGY REVIEW

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DA IL Y 26/ we ek W EE KL Y 23/ M on th M O NT H LY 211 /Y ea r YE A R LY <1 /Y ea r Fi rs tV isi t

0

Figure 2

Frequencies of all visits [Source: Bachelor 2004]

Over forty per cent of those who visit a cemetery report that they attend at least once each week (see Fig. 2). Thousands visit daily. Frequent visitors typically include those attending a grave of their own child, spouse or parent, and those of southern European (particularly GreekOrthodox and Italian-Catholic) families (see Figs. 3 and 4). Conversely, those reporting the most infrequent visits typically include those attending a cremation memorial of a grandparent or friend, Christian Protestant and non-religious mourners and those of British and Australian families. Australian 48.6%

Other 12.8%

Croatian 1.7% Polish Maltese 2.1% 2.3% British 6.5%

Greek 9.4%

Italian 16.7%

Figure 3 Nationality by which members of the family most identify themselves [Source: Bachelor 2004] 50 45 40 35 30 % 25 20 15 10 5 0

O rt ho do x U ni tin Pr g es by te ria O th n er C hr is tn N on -C hr is N tn o A ffi lia tio n

ic

A ng

at ho l C

Cemetery Clients

lic an

Australian Pop.

Figure 4 Major religions of Australian visitors contrasted with the general population [Source: Bachelor 2004] 410

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Public anniversaries and religious festivals (including Mothers Day, Fathers Day, Christmas and Easter), are found to be very popular occasions within all major cemeteries. Mothers Day and the later part of the preceding week is by far the most popular occasion to visit, with twice the weekly average occurring over this period. And one in five visits is reported to coincide with a personal anniversary, the most popular being the anniversary of death (9.3% of all visits), birthdays (9.1%), and wedding anniversaries (1.2%). Customary pre-bereavement practices of seeing loved ones and giving gifts on these occasions are commonly substituted after death with visiting the grave or memorial and placing flowers, greeting cards and other symbolic gifts. This symbolic giving expresses a continuing bond and often mitigates emotions of loss, particularly at times of specific personal remembrance. For many mourners, the cemetery provides an essential place of focus and, for some, is reported to be the only place where vital communication with the decedent may occur on important occasions. The vast majority of cemetery visits occur shortly after the respective death. Abatement of visitation frequency is most evident within weeks or months of the death and funeral, but in some cases occurs a year or more later. This wane in visitation typically follows a similar pattern with no significant variation from the general trend found to be unique to any specific social or cultural identity. Visiting a grave or memorial is evidently of greater personal value to those more recently bereaved and endeavouring to accommodate abrupt separation. As mourners progressively adjust to bereavement and grief intensity subsides, most report a corresponding diminution in the personal need to visit a memorial. A visitation trajectory (Fig. 5), indicating the proportions of visitors attending each year since the death of a significant other, was constructed from data obtained from 3,000 mourners visiting cemeteries throughout Australia. The data show that 21% of all visits occur within the first year of a death. Only 5.2% of all visits occur five years after a death, just 2.5% ten years after, 1% fifteen years later, and merely 0.7% after twenty years.

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The median interval between death and a cemetery visit was found to be 3.7 years. 25 20 15 % 10

Social and cultural diversity

5 0

bereavement. Deliberate avoidance may be indicative of a failure to satisfactorily work through grief and may deny affected mourners the emotional benefits evidently available to more regular visitors.

0 2 4 6 8 10 12 14 16 18 20 22 24 26 28 30 32 34 36 38 40 42 44 46 48 50 Years

Figure 5

Cemetery visitation trajectory [Source: Bachelor 2004]

Visitation emotions Emotion is an elusive concept to define, but it involves potentially intense internal feelings: a construction of cognitive, physiological and behavioural components (Weiten 1998:406). Theorists identify at least eight primary emotions and suggest that additional emotions are produced by blends of primary emotions and variations in intensity (Plutchik 1993:1). Emotions such as grief, sadness and pensiveness may therefore be considered to involve one primary emotion, though experienced at different levels of intensity. Two major primary emotion groups were found among cemetery visitors: sorrow and solace (Bachelor 2004:117). The sorrow group of emotions includes grief and sadness. Similarly, the solace group includes specific emotions of relief and peace. Other reported emotions sometimes experienced in the cemetery include guilt, respect, loss, loneliness, fear and anger. The emotions of solace (including relief and peace) reported by almost four out of five cemetery visitors are considered integral to satisfactorily working through grief. Simultaneously, the emotions of sorrow (including grief and sadness) and guilt, loss, loneliness and anger were all found to progressively subside in most regular visitors. This subsidence in intensity of emotions commonly occurs rapidly after the funeral or following a specific turning point. And most mourners find that subsidence in intensity of these emotions generally correlates to abatement of visitation (Bachelor 2001:45). Retention of what may be considered negative emotions is reported more among those who avoid visiting the grave or memorial during early Volume 16, Issue 5, December 2007

A greater total volume of visits is paid to the graves and memorials of parents than to those of all other relationships (see Fig. 1), which relates to more mourners being bereft of parents than of other particularly close relatives. However, graves of children and spouses receive the greatest proportion of more frequent visits (i.e. at least once a week), which is indicative of a greater emotional response. Though more people may be expected to have deceased grandparents than other relatives, the commitment to visiting graves of grandparents is evidently much less than to those with whom we have shared a greater emotional bond. The greater the bond: the greater the grief. The greater the grief: the greater the frequency and duration of cemetery visits. Altogether, over 95 per cent of cemetery visits are made to graves and memorials of relatives, and almost five per cent are to those of friends. Just two out of each thousand visitors were found to be attending for other reasons including heritage interests and leisure pursuits. And very few children have reasons to visit cemeteries as the incidence of death among those dear to us is something that increases with age. So the median age of cemetery visitors (56) was found to be over twenty years older than the median age of the general population (see Fig.6). 25 20 15 % 10 5 0 0-9

10-19 20-29 30-39 40-49 50-59 60-69 70-79 Australian Pop. Cemetery Clients

80 +

Figure 6 Ages of cemetery visitors compared with the general population [Source: Bachelor 2004 HEALTH SOCIOLOGY REVIEW

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More than half of all Australian funerals involve cremation (Australasian Cemeteries and Crematoria Association (1998:9), yet only onefifth of all cemetery visits relate to cremation memorials (Bachelor 2004:88). Two main reasons are identified for this. Firstly, some cremated remains are not interred within cemeteries. Secondly, those who maintain a stronger association with the body of their deceased are more inclined to choose burial and to visit more frequently. The latter reason was found more commonly with Southern European families, but was also evident among those of other ethnicities (including Anglo-Protestants) who had lost a child. So, although virtually as many stillborn babies are cremated as are buried, major crematorium service records show that ten times as many deceased children who have lived beyond birth are buried than are cremated (Bachelor 2004:88). Many visitors value various opportunities that cemeteries provide for continuation of cultural traditions. To this end, cultural segregation of traditional funereal and commemorative activities within the cemetery is particularly important to many mourners of diverse backgrounds. Yet this choice has become less available in contemporary memorial parks developed within the homogenising concepts of non-denominationalism or multiculturalism (Bachelor 2001:45; 2002:15). The phenomena of bereavement and grief are common across human cultures. Practical issues acted out in the cemetery, including the funeral, memorialisation and visitation may overtly display notable cultural variations, but these practices are found to serve essentially similar purposes to most people. Within the cemetery, significant behavioural variances are more evident between the sexes than between most ethnicities. Behavioural differences between the sexes are today commonly attributed to different social conditioning and developmental needs. However, notable variations between the sexes, including those of biological, psychological and social natures are all considered to contribute to the difference in typical life spans. The life expectancy of Australian males is currently around 77 years, while for females it is around 82 years (Australian Bureau of Statistics 2004:100). But when a further three years

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difference in the average age at marriage is added to the difference in lifespan, then a typical married woman may expect to be widowed for around eight years and visit her husband’s grave or memorial over much of this period. Almost twice as many females are found to visit cemeteries as do males. Factors relating to the proportion of female visitors include their concentration among the higher age brackets, as more women outlive their partners, and the higher incidence of visits among older people. But even more significant is the evidently greater devotion among females to tending graves and memorials of those whom they have loved and lost through death. In a review of several distinct sociocultural groups visiting specific cemetery sections, the average duration of female visits was found to be greater than that of male visits within each group (Bachelor 2004:54). Generally, visits by females were found to be half as long again as visits by males. But a greater variation was found among average visits to children’s graves, where visits by females were almost twice the duration of visits by males. And while females were found much less likely than males to visit adult graves on their own, mothers were much more likely than fathers to make solo visits to their own child’s grave.

Conclusion That to many Australians the cemetery is as sacred as the church is not surprising, as the ancestry of contemporary cemeteries lies in consecrated churchyards and church-controlled burial grounds. The concept of ‘God’s acre’ where the deceased ‘rest in peace’ remains today. So, the cemetery has a degree of sacredness to many, albeit less so than that of the church, while others consider that it should be venerated, but for non-religious reasons. Many visitors value various opportunities that the cemetery provides for continuation of cultural traditions. To this end, cultural segregation of traditional funereal and commemorative activities is particularly important to many mourners of diverse backgrounds. Yet this choice has become less available in newer cemeteries with homogenising controls over memorialisation and commemorative behaviour. Volume 16, Issue 5, December 2007

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For many mourners, cemeteries are venues of important social support and assistance towards grief mitigation through mutual sharing of personal bereavement experiences with other visitors. Close and highly valuable friendships develop among truly empathetic mourners of specific cultural and social groups within dedicated cemetery compartments. And to many mourners, particularly mothers and non-Englishspeaking immigrants, peer support is considered preferable to professional counselling. Social and individual values of the cemetery are highly subjective; and general community values ascribed to the cemetery through legislation and management regulations evidently do not reflect those of all, or even a majority of stakeholders. Among recently bereaved cemetery visitors, values of the cemetery vary by emotional significance of the decedent, ethnicity of the family, sex of the visitor, method of disposition of remains, afterlife concept of the visitor and their stage of progression in working through grief. Many bereaved persons uphold the cemetery as a place of great emotional and spiritual significance, and consider it worthy of great respect for its sacredness, cultural significance, social support, heritage, and commemorative values. And visiting the grave or memorial site of a loved one is a most important behavioural activity of many mourners holding these values. However, not all bereaved persons are able or chose to visit the cemetery. So some mourners adopt personal concepts of grief management that accommodate no visitation. The main reasons for gravesite or memorial visitation incorporate expression of grief, while repression of personal grief is a major factor in much non-visitation. As satisfactory expression of grief is recognised as crucial towards a satisfactory bereavement outcome, and grief repression is recognised as incubating potentially pathological conditions, cemetery visitation is evidently a most important component of natural grief management for many mourners. Typical patterns of cemetery visitation are indicative of satisfactory bereavement outcome, while extreme behaviours (including both deliberate avoidance and chronic daily visitation) are indicative of unresolved grief issues. Volume 16, Issue 5, December 2007

Many mourners denied a meaningful locus for the expression of their grief (such as through the scattering of cremated remains) may also be expected to retain unresolved grief issues indefinitely. Nevertheless, for literally millions of mourners throughout Australia the cemetery does offer solace and a sense of personal wellbeing. It is a place that facilitates a degree of control over loss and allows some reprieve from the anguish of separation. It is an important place where potentially stressful obligations may be expressed and resolved. Cemetery visitation is a high participatory, valueladen, expressive activity, and the most significant, observable practical behavioural activity of most recently bereaved persons.

References Ata, A.W. (1994) Bereavement and Health In Australia: Gender, Psychological, Religious And Cross-Cultural Issues David Lovell: Melbourne. Attig, T. (1996) How We Grieve: Relearning The World Oxford University Press: New York. Australasian Cemeteries and Crematoria Association (1998) ‘Cremation in Australia’ ACCA News Autumn: 9-11. Australian Bureau of Statistics (2004) 2004 Year Book Australia Cat. No. 1301.0 ABS: Canberra. Bachelor, P. (2001) ‘Beyond the funeral’ Grief Matters Summer: 43-46. Bachelor, P. (2002) Life After Death: Understanding Bereavement And Working Through Grief Hill of Content: Melbourne. Bachelor, P. (2004) Sorrow and Solace: The Social World Of The Cemetery Baywood: New York. Chambers, D. (1990) No Funerals On Picnic Day A.F.D.A. (Funeral Directors): Melbourne. Chambers, D. (1994) 100 Years of Le Pine Hyland House: Melbourne. Etlin, R.A. (1984) The Architecture of Death MIT Press: Massachusetts. Flood, J. (1983) Archaeology of the Dreamtime Collins: Sydney. Freud, S. (1917) ‘Mourning and melancholia’ in Sigmund Freud: Collected Papers (vol 4) (J. Traviere, trans.1959) Basic Books: New York. Griffin, G.M. and Tobin, D. (1997) In The Midst Of Life: The Australian Response To Death Melbourne University Press: Melbourne. HEALTH SOCIOLOGY REVIEW

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Philip Bachelor Keister, D. (1997) ‘A brief history of the community mausoleum’ American Cemetery 69(9):20-52. Lehman, G. (1997) ‘Life’s quiet companion’ in Carey, G. and Sorenson, R. (eds) The Penguin book of death Penguin: Melbourne. Linden-Ward, B. (1986) ‘The heritage of Mount Auburn’ reprinted by Mount Auburn Cemetery courtesy of Cemetery Management Magazine January. Liveris, L.B. (1999) Memories Eternal: The First 100 years of Karrakatta Cemetery Metropolitan Cemeteries Board: Perth. Nicol, R. (1994) At The End Of The Road: Government, Society And The Disposal Of Human Remains In The Nineteenth And Twentieth Centuries Allen and Unwin: Australia. Nicol, R. (1997) Fairway to Heaven: The Story Of Enfield, Australia’s First Lawn Cemetery Enfield General Cemetery Trust: Adelaide.

Parks, C.M. (1996) Bereavement: Studies of Grief In Adult Life Penguin: London. Plutchik, R. (1993) ‘Emotions and their vicissitudes: Emotions and psychopathology’ in Lewis, M. and Haviland, J.M. (eds) Handbook of Emotions Guilford Press: New York. Sagazio, C. (1992) Cemeteries: Our Heritage National Trust of Australia (Victoria): Melbourne. Weiten, W. (1998) Psychology: Themes and Variations Brooks/Cole: Pacific Grove, California. White, J.P. and O’Connell, J.F. (1982) A Prehistory of Australia, New Guinea and Sahul Academic Press: Sydney. Worden, J.W. (1991) Grief counselling and Grief Therapy: A Handbook For The Mental Health Practitioner Routledge: London. Zelinka, S. (1991) Tender Sympathies: A Social History Of Botany Cemetery Hale and Iremonger: Sydney.

Advances in Contemporary Palliative and Supportive Care Advances in Contemporary Palliative and Supportive Care Edited by Carol Tishelman and Joakim Öhlén (Karolinska Institute, Stockholm) and Annette F. Street and Jeanine Blackford (LaTrobe University, Melbourne) ISBN 978-0-9757710-4-4 a special issue of Contemporary Nurse* - Volume 27 Issue 1: December 2007 Guest Editorial: Advances in contemporary palliative and supportive care - Carol Tishelman Part I Editorial: Back to our roots: Palliative care in the clinical setting - Jeanine Blackford Narratives of a man with severe chronic heart failure and his wife in palliative advanced home care over a 4.5-year period Margareta Brännström, Inger Ekman, Kurt Boman and Gunilla Strandberg ‘I’m just not interested in eating’ - when nutrition becomes an issue in palliative care - Margaret O’Connor Nurses’ experiences of clinical use of a quality of life instrument in palliative care - Carina Lundh Hagelin, Yvonne Wengström, Carol Tishelman and Carl Johan Fürst Challenges and choices: An audit of the management of nausea, vomiting and bowel obstruction in metastatic ovarian cancer - Jackie Walker and Pauline Lane Part II Editorial: Palliative care and vulnerability of self Joakim Öhlén Lets talk about sex: Risky business for cancer and palliative care clinicians - Amanda J. Horden and Annette F. Street Next of kin’s feelings of guilt and shame in end-of-life care -

Birgitta Andershed and Carina Werkander Harstäde Progress in understanding grief, complicated grief, and caring for the bereaved - Anthony W. Love Bearing witness – an existential position in caring - Maria Arman Part III Editorial: Leading the way: Innovative healthpromoting palliative care - Annette F. Street The turning point: Identifying end-of-life care in everyday health care practice - Eva Jakobsson, Ingrid Bergh and Joakim Öhlén The influence of environment in palliative care: Supporting or hindering experiences of ‘at-homeness’ - Birgit H Rasmussen and David Edvardsson From concept to care - enabling community care through a health promoting palliative care approach - Sue Salau, Bruce Rumbold and Barbara Young Advance care planning in residential aged care facilities Jeanine Blackford, Elizabeth Strickland and Bridget Morris Karmic quest: promoting a peaceful death for Thai family caregivers of people with AIDS - Kittikorn Nilmanat and Annette F. Street Book Review: ‘Mom’s Cancer’ - Elizabeth Pascoe *Indexed/abstracted in: Thomson Scientific SCIE & SSCI; NLM PubMed/Medline; EmCare; PsycINFO; Scopus; CINAHL & AMI.

Available separately for purchase by libraries and for course adoptions; evaluation copies may be requested Published by eContent Management Pty Ltd (SAN 902-4964) PO Box 1027, Maleny, QLD 4552, Australia Tel. +61-7-5435 2900; Fax: +61-7-5435 2911 Enquiries: [email protected]

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Copyright © eContent Management Pty Ltd. Health Sociology Review (2007) 16: 415 424

Death and mourning in technologically mediated culture ABSTRACT

KEY WORDS Sociology, mourning, grief, public, real, fictional, celebrity, death

This paper examines the expansion of death and grief from private experience and spaces, into more public spheres via a range of media events and communication technologies. This shift is increasingly acknowledged and documented in death studies and media research. The modern experience of ‘sequestered death’ has passed. Death images and events are now thoroughly mediated by the visual and communication technologies used and accessed by a vast number of citizens across the globe. At the same time, the proliferation and accessibility of death imagery and narratives does not necessarily mean that the Western world has moved forward and beyond ‘death denial’. Indeed, one of the key arguments of this paper is that mediated death – death as televisual, cinematic, and journalistic image and narrative – does not necessarily equate to a familiarity, and especially an existential acceptance of death, as it is faced and experienced in everyday life and relationships. Indeed, what we may be facing, and witnessing, is a widening gap and experiential differential between media/technological death culture and ‘real life’ contexts and temporalities of death and bereavement. Received 2 April 2007

Margaret Gibson School of Arts, Media, and Culture Griffith University Australia

Introduction No matter what the place or time of day, media sounds, images, and messages are continuously available to be heard or seen. They saturate virtually every aspect of experience and work their way into the conscious or unconscious minds of most people who are exposed to them, there making modern Western society surely the most media-mediated society that has every existed (David Gross).

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ersonal bereavement and/or seeing a dead body can remain outside ‘real life’ experience for most people in early to midadulthood, living in relatively affluent nationVolume 16, Issue 5, December 2007

Accepted 2 September 2007

states. At the same time, it is very likely that the majority of these people have seen hundreds, possibly thousands of simulated death via media technologies. Clarke argues that ‘in the absence of personal experience with death people rely on media, among other things, for information, attitudes, beliefs and feelings about death and its meanings’ (2005-2006:154). Sometimes, it is celebrities or major national or international public figures whose deaths are the first to make their mark on the biography and psyche of individuals. To briefly illustrate this point, after the death of Steve Irwin, a great deal of public discourse in Australia surfaced about the emotional impact of his death on children. And in keeping with Frank Furedi’s thesis/critique of therapy culture, a swathe of advice from experts circulated in the media directed at teachers and parents. This paper examines the expansion of death and grief from private experience and spaces, into more public spheres via a range of media HEALTH SOCIOLOGY REVIEW

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events and communication technologies. This shift is increasingly acknowledged and documented in death studies and media research (Pantii 2005; Roberts and Vidal 1999-2000; Nager and de Vries 2004; Jones 2004; de Vries and Rutherford 2004; Thompson 1995; Walter et al 1995). At the same time, it is important to keep in mind that the relationship between private and public is complicated by media technologies which traverse binaries and border lines. The modern experience of ‘sequestered death’ has passed. Death images and events are now thoroughly mediated by visual and communication technologies used and accessed by a vast number of citizens across the globe. For example, mobile phone cameras make it easy for individuals to take snapshots of catastrophic events, and the world-wide-web has ushered in an era of self-appointed journalists or amateur film-makers. Through the internet, people are increasingly making their lives, experiences, and bodies open to public viewing, comment and consumption. There is a vast archive of virtual cemeteries, memorials, grief chat rooms, grief blogs, and condolence messages on the world-wide-web. Beyond more traditional and/or government based forms of acknowledging a life and a death, for example, birth and death certificates and announcements of births and deaths in newspapers, new forms of technology have created a form of do-ityourself (DIY) rites of mour ning and memorialisation. This paper can only offer a snapshot of the complexity of death culture in the media, and as such its main focus is that of the celebrity deaths, aspects of popular culture, in particular representations/simulation of death, and internet based publications of death imagery and mourning practices.

The ‘real’ and its doubles Death as story and image is a normal, ubiquitous feature of news-broadcasts, film images, television programs and computer games (Walter et al 1995; Azoulay 2001; Berridge 2001; Field and Walter 2003; Jones 2004;

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Knox 2006). Citing Jeffrey Sconce, Steve Jones writes: ‘the media and the dead have been linked in our collective consciousness for decades’ (2004:83). In technologically dependent societies, news about death is almost without exception relayed via communication/ information technologies (Jones 2004:83). And communication technologies — telephone, text mobile messaging, email, internet, television, and radio — have also created new ways in which the dead are memorialised through communication technologies. For example, it is not uncommon for the grieving to keep emails, text messages, and voice messages of loved ones who have died. These keepsakes have similar value and status to other technologically produced objects such as photographs and home-video footage. The value of these technologically based keepsakes has been particularly evident post-September 11 and the internet has been one of the main archival sources of documenting our new digital age of memory and memorialisation (see September 11 Digital Archive). Death is not a taboo in contemporary televisual cultures, but rather a narrative force and image system used to inform, shock and entertain. Especially in terms of television reportage, not all deaths are equal in their economic and symbolic value: first world nations, and the lives of elite individuals and groups have greater market and media value. Not surprisingly, some deaths and death-related issues fail to get sufficient political and media recognition/ attention relative to both nation-state status as well as global population reality: this is particularly true in the case of AIDS and poverty. When cyclone Katrina devastated New Orleans, the slow and insufficient political response was viewed as indicative of the symbolic and economic devaluation and disregard for the lives of poor and non-white Americans. Research into the mass media also suggests that mass killings and genocide are often reluctantly or slowly picked up in the media/news coverage and very often these events are taking place in third world, postcolonial countries (Editorial in Media Development 1992:1).

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In contrast, America’s television and film diet of simulated violence and death was swiftly curtailed in the days and weeks post-September 11. As the line between the fictional and the real blurred, attention was paid to the psychological impact of death imagery within collectively and individually traumatised psyches: Warner’s [film] ‘Collateral Damage’ was pulled from release. On television, violent movies also came under network scrutiny. USA cancelled its prime-time run of ‘The Siege’ (which deals with Arab terrorists who plan to bomb New York). At TBS violence-packed films like ‘Lethal Weapon’ were replaced with family fare like ‘Look Who’s Talking’. TNT replaced its 1970s retro lineup of ‘Superman’, ‘King Kong’, and ‘Carrie’ with ‘Close Encounters of the Third Kind’ (Spigel 2004:235).

At the same time, Spigel documents the rhetoric calling on viewers to return to ‘normal’ a plea to rebuilding moral and emotional National strength - whose subtext was the rising costs of disrupted television programming and its paid advertising (Spigel 2004:235-36). In ‘The Pornography of Death’, Geoffrey Gorer argued the dominance of violent images of death in the mass media was indicative of, and a mechanism through which, natural death was concealed and rendered taboo. Kate Berridge argues this thesis no longer holds, evidenced by the vast numbers of ways in which death is documented and discussed in contemporary times. She cites the growth in the market of memoirs, documentary films, and art practices recording and representing personal stories of those facing death or experiencing bereavement (Berridge 2001:246248). She also documents the very visceral, sometimes hyper-real, ways in which corporeal deadness and transformation – partly what Gorer means by natural death – are graphically represented in art works, documentary film and photography (Berridge 2001:243-268). At the same time, echoing Aries, Berridge suggests that if there is still a remnant taboo it is in relation to bereavement and the permissibility of its expression (Anes 1974). Volume 16, Issue 5, December 2007

This paper will examine representations of death in two categories: fictional and real death. This distinction is generally signalled by a genre and its visual, sound, voice, performance and other presentation styles. Thus news broadcasts and documentaries engage with aesthetic practices, political interests and ethical concerns that announce to the viewer/reader ‘this is real life’ or ‘this really happened’. Depending on subject matter, its history and style of representation, the viewer/audience learns and comes to understand the linguistic codes and visual signifiers of morality, sincerity, or matterof-factness constituting the news broadcast or documentary. Through the camera lens, images of death and dying are brought close to the eyes and consciousness of the viewer/audience and yet a relationship to distance is part of the experience. While technologically mediated, and enhanced proximity is designed to over-come the actual corporeal and geographical distance of a representation, there is always an effect of distance. The viewer knows they are experiencing proximity at a distance. And depending on the politics or ethics of a representation, this proximity at a distance can also produce modes of emotional connection or disconnection from the image and narrative. While governments regulate the content of commercial and public media in most democratic nation-states, the internet is an altogether different medium, in ter ms of regulation and ownership. There is an extensive amount of real-life and simulated violence and death which can be found on the internet. For example, terrorist groups use the internet to show footage of people captured and beheaded. It is partly through the internet that modern forms of warfare or conflict are staged. One of the features of contemporary popular culture is that its products are identified and marketed by genre. Indeed, we are used to seeing death packaged and signposted through genre. Made-for-television hospital dramas, soap operas, crime/detective shows, forensic medicine dramas, all offer perspectives on death and dying which are genre based. Genre, and their character and narrative formulas, make

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representations of death, and to some extent audience responses, predictable. For example, we know generally that soap operas offer sympathetic stories and characterisations of bereavement,1 while action movies offer the thrill and voyeurism of watching people die violently at the hands of heroes and villains. Moder n communication technologies, particularly television and the internet, have also created shifting and unpredictable movements of imagery and emotion concerning a range of human experiences, not least of which is death and dying. The simple action of flicking through television programs creates a transitory montage of different types and genres of story. However, within the space of an entire television program, particularly those that contain stories relating to death and grief, the modern day media viewer/consumer enters into short or extended time frames of emotionally based and/or emotionally presented content. Within this mediated context, it is ‘significant’, publicly/ globally recognised deaths that paradoxically narrow and focus attention, arresting and concentrating vast and diverse populations across the globe. This certainly happened in the case of the September 11 bombings. As Pickering and Keightley comment: Modernity is the experience of life lived in fragments, with the swift pace of change and the problems of semiotic overload contributing to the fragmentation of experience and our ability to assimilate it into an ongoing lifeprocess (2006:924).

It is through catastrophic death, or symbolically and economically significant death, that attention to the ‘here and now’, even if it is in another part of the world, can emerge through the media: Where warfare once mobilised a generation and moved it about in space; the media now mobilise a flow of images and move them about in space. Communication vectors, most of which developed as part of modern war machine, tend to become ever more global and synchronised. Now they produce a

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synchronising of experience [and] common generational structure of feeling (Wark 1999:218).

While the quality or subject matter of some death and grief stories can resonate with people for a long time after viewing, a great deal of popular culture has a short-term impact on psyche and emotions. Popular culture, with its fast flows of imagery, talk and sounds, creates bodies and psyches absorbing and deflecting stories and emotions within fractions of time. However, there is quite a different temporality between the experiences of death and grief as they are represented in popular culture and the real-life experiences of death and grief, which obviously have more sustained temporal, not to mention deeper levels of psychic and emotional, impact. Nevertheless, as will be discussed later on, some celebrity deaths do resonate in the lives of the individuals in ways that belie simple distinctions between real and fictional, myth and reality, public and private. Through genre, death and dying become domesticated for consumption. Recent television programs such as Crime Scene Investigation (CSI), with their gory, anatomical scrutiny of the dead body, have pushed previous limits of representation in televised programs. And yet programs such as CSI do not represent corpses in ways that mimic perceptions that one might expect in real life experiences of looking at a dead body. There is no room for complicated, conflicted or indeed sensitive thoughts and emotions. On the contrary, bodies are hypervisualised and fragmented through technological apparatuses and forensic discourses rendering them subjects in the service of knowledge and truth. As Sue Tait writes: SCI rationalises violence and death: they are subject to and contained by reason, and thus their spectacular and carnographic depiction is framed as truthful and realistic. This rational imperative extends to the way in which the corpse and death should be viewed: as an object for science rather than emotion, spirituality or othered cultural beliefs (Tait 2006:57).

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It is because the perception of the viewer in CSI is aligned with the perspective of the trained eye of the forensic scientist, that the viewer is, from each episode to the next, socialised into reading and experiencing dead bodies in emotionally distancing ways. To the uninitiated, CSI is confronting, perhaps even shocking, and yet the shock value of a new aesthetic of death representation does not mean death denial is waning in public or collective culture. On the contrary, such programs can be read as a reflection and extension of the need to face death, and even be confronted by it, in highly stylised, ‘unreal’ ways. And again, genre, including the invention of new genre forms, is the principle way in which death is made familiar, and rendered intelligible for popular consumption/viewing. We may indeed be under the illusion we know death very well; that it is something 21st century human beings confront, constantly expose, and go towards, rather than seeing death as that which comes towards us, shaking values, knowledge and reason. The distinction between the real and the fictional is not necessarily simple or immediately legible. As Baudrillard and other commentators note, the bombing of the twin towers in New York mimicked the narrative style and imagery of Hollywood disaster films. The fictional underscored the real. The constant replaying of the image was also viewed as a device to shock viewers into the real. But the relationship between the ‘real’ and its fictional or pretend doubles takes other for ms in relation to death and its representation. While the modern experience of dying and death is generally contained within the space of the hospital/hospice and under medical management, ‘this real’ has its double in medical dramas (ER, House) set in hospitals. And the double becomes the means or portal through which the real is indexically invoked. Death as performance is ‘made real’, and viewers can commiserate with the dying and their families, via the hospital drama. The double renders public or accessible what could otherwise remain hidden and mysterious. However, with the advent of reality television, Volume 16, Issue 5, December 2007

a new genre of hospital drama has emerged which is set in real hospitals. This latest turn in popular culture reconstitutes the real life context of the hospital into a familiar genre of drama. The editing, camera work, and voiceover all work to construct an ordered narrative of events, scenes, stories in a setting that would otherwise be experienced as diffuse and narratively fragmented. Through this process of reconstituting the real into genres of popular culture and media, the difference between the real and its representational doubles collapses into a feedback loop as each potentially stands in for the other.

Celebrity deaths The extent of an individual’s celebrity is certainly measured by their death. When a death is mentioned as part of television news it is usually because a celebrity has global cachet. Acknowledgement in the print media or internet is not as economically or symbolically valuable compared to television but recognition across the spectrum of media (television, media, internet, newspapers and magazines) signifies high celebrity status. While death from wars, political assassinations, and natural disasters have long been a means for rallying National unity and collective forms of identification, mourning and memorialisation, global media culture creates f o r ms of community and mass cultural identifications beyond the geo-political territory of the nation-state (Wark 1999). Global celebrity culture, with its global market reach, constitutes and is constitutive of, commonplace knowledge, shared identifications and memories that are trans-national. This was particularly evident in the aftermath of Princess Diana’s death. Not only did the media reach saturation point in the hours and days after her death, years later public intellectuals and academics are still analysing why her death registered so powerfully in the lives of millions of people who knew her only as media story and image. Even though celebrities are not known personally through face-to-face relationships, they are nevertheless known in ways that impact on people’s psyches:

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Margaret Gibson While the generation now in their forties and fifties may be somewhat bemused by the media frenzy around the deaths of Michael Hutchence or Kurt Cobain, they are just as likely to have strong personal memories of the deaths of Buddy Holly or Marilyn Monroe or Elvis Presley or Janis Joplin or John Lennon. It has been clear for many years that our everyday lives can be indelibly marked by celebrity events – deaths, births, marriages, disasters, accidents. The power of a globalised media to saturate all media forms and outlets with the top international story, and the relatively recent but now fundamental importance of the everyday celebrity story for contemporary media producers and consumers, have dramatically enhanced that emotional potential in recent years (Turner: 2000:2-3).

The private lives of celebrities are very much intertwined in the relationships and conversations of ordinary people. In media culture, celebrities are presented as people who are familiar, and cultivating celebrity partly requires that they themselves give media access to their private lives. Celebrity deaths have increasingly gained significance as the means through which collective and public forms of mourning are ritualised. Writing about the extensive public mourning of Princes Diana, Richard Johnson suggests that a transference of grief occurred through Diana’s death: it was a vehicle for grieving over other deaths that had not been property mourned (1999:31). The public concealment of grief as a lived reality in many people’s lives can find expression or an emotional outlet in monumental public deaths and ‘communities of mourning’ (Kear and Steinberg 1999:6). This thesis is convincing, however, it doesn’t fully explain why the deaths of some public figures or celebrities are capable of rallying so much collective ritual engagement and outpouring of emotion. Not every public figure or celebrity is capable of amassing such large-scale collective ritual/ emotion but clearly some are: namely Princess Diana, John F. Kennedy, and to a lesser extent

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John Lennon, Kurt Cobain, and more recently Steve Irwin. Perhaps if Elvis Presley had died twenty years later in an era where the media responds to public mourning and the public responds to the media’s coverage and on it goes, then perhaps he too would have had a mass public/media response of global proportions. The media not only channels desire but also grief. It is in a very real sense a portal. However, this channelling is not necessarily straightforward because emotional states and preoccupations are also created, rather than simply channelled, through stories and images. When public/celebrity figures die what is lost, is the link between collective myths and ideals, and their embodiment in real flesh and blood people. This is partly why people respond so powerfully to such deaths because what seemed so fantastic, so beyond the fray of ordinary existence – the elevated, romantic life of a princess or the fearless wild life warrior - turns out to be mortal after-all. The fantasy or rather the spell that is cast by all fantasies is broken in death and this is partly what is mourned rather than simply the person-in-themselves who died. Judith Williamson presents a similar but slightly different thesis in relation to Princess Diana’s death. Explaining why people go out into the streets, creating sites of collective mourning and pilgrimage, she writes: … we live a lot of our emotional lives by proxy. Life is messy and confusing, but many of our feelings are caught up in media stories – real and fictional – whose meaning, both because of its unpredictability (it was not a plot move we had seen coming) and because it removed the real person behind the images, so that they were suddenly, simply images – as if paper money was suddenly revealed as just paper. The drive to go physically to the Palace and other landmarks has perhaps been an attempt to grasp something more solid – a run on the band of the Real (Williamson 1998:26).

Stories of princesses, heroes, the images and lives of pop stars; this is the stuff of childhood identifications acted out in play and the fantasy Volume 16, Issue 5, December 2007

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life of mind. It is these archetypes of culture (many of which are universal or translate universally), which source and partly explain the massive response to some deaths. In other words, while Princess Diana was mourned, so too was the archetype of the princess in the collective and individual psyche. Princess Diana or Steve Irwin can be interpreted as the external embodiment or outward projection of an inner identity and desire to be, or to be loved, as a princess, hero, warrior or saviour. They were loved and mour ned partly for what they embodied, that is, the collective ideal, fantasy or myth of the self. And yet their mourning cannot be explained in this way alone. Steve Irwin wasn’t a seamless, smooth heroic figure of identification: he was a manic, melancholic, ‘good mate’ figure. He embodied historically valued ideals of Australian masculinity: mateship, the down-to-earth bloke who would do anyone a ‘good turn’. Steve Irwin could have been anyone’s best mate, husband or father and this ability to be identified or symbolically substituted within intimate relationships also explains the significant expression of grief and emotion from the Australian public and beyond. Freud explained mourning as a narcissistic process: the fear of losing the loved object is protected against by incorporation of the object into the self. In other words, the loved one forms the basis of the self and is thus never fully lost. This psychic cannibalism at the very origin of self-formation takes place, at least initially, within significant, primary relationships: particularly the relationship between mother and child. In ‘Mourning and Melancholia’ [1917] (1960), Freud argues that the infant in its primary stage of narcissism, which accords with the oral or cannibalistic phase of libidinal development, incorporates the mannerisms and gestures of primary figures of identification as formative of its own ego (1917:249). In this earlier essay, melancholia is treated as the pathological alter-ego or underside of mourning. Later, in ‘The Ego and the Id’ ([1923] 1960), this view is revised as melancholia is now seen as a primary process of ego-formation.2 Because mothers and fathers, or other major primary Volume 16, Issue 5, December 2007

figures are the foundational figures of mourning it is generally these deaths, which trigger the most profound feelings of self-loss. It is difficult to imagine that celebrities – people personally unknown to the self – could, strictly speaking, be mourned. While they may indeed have shaped the identifications and desires of many people, particularly if they also embody mythic or idealised forms of identity, such identity losses are not explicable as processes of mourning in any deeply personal and corporeal sense. In other words, unlike the losses of parents or other significant loved ones, these identity losses, while narcissistic, are of a different order. Because so much of our identities and histories are forged through mediated culture, there are very profound, identifications that build up or carry through, often unconsciously, over-time. One can imagine a person who, upon finding out that a public figure or celebrity who shaped their memories of childhood died, being effected by this death because it renders fragile their own sense of mortality, particularly the mortality of personal histories and memories. The living embody material memories in and by the fact of their existence; so as long as this or that person is alive in the world the past can seem alive or continuous with the present. However, when someone from childhood history and memory dies, something of that childhood dies too and the past somehow seems closed and divided from the present and future.3 The media is able to tap into these narcissistic wounds as it commercially exploits a celebrity death, because individual identities and biographies are thoroughly contiguous with the lives of celebrities and media figures. Thus the loss of a celebrity pop star or movie actor has an emotional and psychical impact precisely because it ruptures the continuity of a biography melded with that of a celebrity. The death of significant others (personally known loved ones) or significant figures of history and identity, transforms the past into pure memory. The narrative experience of continuity or blending between past, present and future is ruptured by significant deaths and these can include the deaths of public figures or celebrities.

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Beyond the public/private distinction? In Europe up until the 19th century death was embedded in social rituals and practices that gave the dying and bereaved special status (Aries 1974). Removed from the normative expectations of everyday life and duty, the bereaved (usually of economic means) had time to grieve and adjust to loss. The modern death taboo requires that the bereaved cope or give the appearance of coping and adjusting to loss. Paid work and ‘keeping busy’ are the requisite means for channelling emotions and repressing contemplative thought. The demands of work in modern consumer societies also afford little time and space to reflect and grieve. It is questionable whether grief can be partly or even wholly sublimated through work, leading some researchers to conceptualise this pathology as stifled (Eyetsemitan 1998) and/or disenfranchised grief (Doka 1989). While a therapeutic, confessional culture may give the appearance that bereavement and its communicative expressions has greater social acceptance, the current epidemic of depression in Australia, the USA and Britain, might suggest otherwise. The opening up of private experiences of death and grief shared to strangers is the result not just of the growth in communication and media technologies, but also the will and desire to record one’s own or a significant other’s existence in the face of death and its annihilations. In the past, particularly in the Western world, it may have been enough to believe in an afterlife as way of assuaging fear of disappearance and countenancing the longing to reunite with loved ones in an afterlife (Gibson 2006). However, the rise of the individual in Western societies has enhanced the symbolic and emotional value of selves and identities to the extent that gaining celebrity, or some form of media attention or public record is a common desire. Furthermore, public space through roadside memorials and internet archives are now sites where individual life and death is recorded for posterity. While access and use of these spaces might signify the growing democratisation of public forms of grief, remembrance and memorialisation, they are also signs of the ascendency of the individual to claim

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the value of its specific life history and existence beyond traditional public and private rites/sites of mourning and remembrance. The internet has opened up and expanded the ways in which people access imagery of death and dying enabling also, the creation of networks of communication and storytelling about death and grief experiences. The internet is one of the new contemporary sites of mourning and memorialisation (Roberts and Vidal 1999-2000; Jones 2004; Pantti and Wieten 2005; Gibson 2006), channelling and expanding a therapeutic culture that encourages sharing stories and building support networks. One of the peculiar features of the internet is that it enables very personal and intimate communication to take place between strangers who may or may not become identified as friends. The grieving may find that it is amongst strangers or ‘virtually located’ friends that they gain consistent support particularly when the time for talking about grief has stopped between other friends and work colleagues. Increasingly it is on the internet that one encounters the virtual, global civil society where forums of dialogue and debate, from the politically serious to the trivial, take place. The relationship between the internet as a more open, democratic, free-market space of communication compared to commercially driven and privately owned media, opens up a number contentious issues in relation to contemporary death culture. For example, the recent execution of Iraq dictator Saddam Hussein was secretly recorded on mobile phone technology. The person who recorded his execution transformed what would otherwise be non-public into a public spectacle and form of witness. While one can speculate on the motives of this act of recording his death, the end result is that it is possible for individuals to see the last moments of Saddam Hussein’s life and his death by hanging on their personal or work computer screens. This example of DIY recording of death, done without, one presumes, the consent of Saddam Hussein himself, creates a divide between media regulated by government, and the relatively open market/space of the internet.4 Instead of accessing the story and imagery of Saddam Hussein’s death through commercial or

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government owned forms of media, individuals across the globe can make their own decision on whether or not to his death. Since the publication of Saddam Hussein’s death, a whole raft of news narratives, blogs, and discussion forums have surfaced on the Net. Indeed the video itself has been duplicated dozens of times in a bid to create new versions and forms of entertainment. For example, the execution has been turned into a music video titled ‘Swinging Saddam Execution Video’ starring GeGe the Go Go girl (see Swinging Saddam). It is unimaginable that the deaths of celebrities would be treated with the same kind of contempt. Indeed, the photographs taken of Princess Diana in her last moments of life spawned public outrage, particularly after they were published by an Italian newspaper. And yet, the question of the recording and publishing Princess Diana’s dying moments has also been the subject of internet discussion forums, with very differing moral and ethical points of view. However, the salient issue, in terms of this paper concerns, is the question of the media’s role in exposing and recording death. Saddam and Diana owned their own deaths even as they died publicly. Part of media’s fascination with recording death and exposing it to public viewing is the barrier that death presents as a public experience. While we can speak about death or mortality as a collective human process and reality, each individual has and experiences their own death which is uniquely their own. So that while the death of others can be witnessed, the movement towards death is an interior, subjective process that cannot be grasped or known from the inside.

Conclusion Making sense of death, framing and containing it within myths, beliefs, stories, moralities and emotions, is part of what human beings do as subjects conscious of mortality. And yet, the increasing production of death-related stories and images, and the concomitant widening of technological access and consumption, does not necessarily translate into a familiar acceptance or acknowledgement of mortality. Indeed, one of the possible paradoxes of this open and expanding market of produced and mediated Volume 16, Issue 5, December 2007

death culture is that it might widen the inevitable gap between ‘real death’ and its imagined or simulated forms. In other words, when death is faced ‘in a real life context’ particularly in relation to significant others, all the narratives and images which have shaped and informed an individual consciousness do not necessarily prepare for witnessing death and experiencing grief. Finally, the desire to capture death, to expose and publish it is partly an effort to breach or transgress the space between public and private. While this space can be breached in the sense of representation, it cannot be undone in terms of accessing and rendering exterior the interiority of death. The fact that Saddam and Dianna, for example, are dying into a space where no one can follow is of course part of the fascination.

Endnotes 1 While death or its possibility is part of the narrative suspense of soap operas providing a cliff-hanger before the season return, death and bereavement can also be given more narrative substance. 2 As the psychic (unconscious) mechanism of incorporation of abandoned object-cathexis, melancholia becomes the prior condition for mourning. It is only through an originary melancholic identification and incorporation of lost objects that the ego can be said to exist at all. 3 Perhaps nostalgia is an important dimension in the mourning process of celebrities or other major public figures. 4 Iraq State television only showed a portion of the video footage, and broadcast it without sound so that the taunting of Saddam Hussein could not be heard. In contrast, it was broadcast in full on Al-Jazeera television.

References Aries, P. (1974) ‘The reversal of death: Changes in attitudes toward death in western societies’ American Quarterly 26(5):536-560. Azoulay, A. (2001) Death’s Showcase: The Power of Image in Contemporary Democracy (translated by Ruvik Daniell) MIT press: Cambridge, MA. Baudrillard, J. (2002) The Spirit of Terrorism: And Requiem for the Twin Towers (translated by Chris Turner) Verso: London.

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Margaret Gibson Berridge, K. (2001) Vigor Mortis: The End of the Death Taboo Profile Books: London. Clarke, J.N. (2005-6) ‘Death under control: The portrayal of death in mass print English language magazines in Canada’ Omega 52(2):153-167. de Vries, B. and Rutherford J. (2004) “Memorializing Loved Ones on the WWW”, Omega: journal of death and dying, 49(1): 5-26. Doka, K.J. (1989) Disenfranchised Grief Lexington Books: Lexington, MA. Eyetsemitan, F. (1998) ‘Stifled grief in the workplace’ Death Studies 22(5):469-479. Field, D. and Walter, T. (2003) ‘Death and the media’ Mortality Virtual Themed Issue: 1-4. Freud, S. [1917] (1960) ‘Mourning and melancholia’ in The Standard edition of the complete Psychological Works of Sigmund Freud (transl;ated by James Strachey) Volume XVIV. pp. 1-6. Freud, S. [1923] (1960) ‘The ego and the id’ in The Standard Edition of the Complete Psychological Works of Sigmund Freud (translated by James Strachey) Volume XVIV. pp. 1-66. Gibson, M. (2006) ‘Memorialization and immortality: Religion, community and the internet’ in L. Hume and K. McPhillips (eds) Popular Spiritualities: The Politics of Contemporary Enchantment Ashgate: Great Britain. pp. 63-76. Gorer, G. (1960) ‘The pornography of death’ in Stein, M.; Viich, A. and Manning White, D. (eds) Identity and Anxiety: Survival Of The Person In Mass Society The Free Press: New York. Johnson, R. (1999) ‘Exemplary differences: Mourning (and not mourning) a princess’ in A. Kear and D. L. Steinberg (eds) Mourning Diana: Nation, Culture, and the Performance of Grief Routledge: London and New York, pp. 15-39. Jones, S. (2004) ‘404 not found: The internet and the afterlife’ Omega 49(1):83-88. Kear, A. and Steinberg, D.L. (1999) ‘Ghost writing’ in A. Kear and D.L. Steinberg (eds) Mourning Diana: Nation, Culture and the

Performance of Grief Routledge: London and New York, pp. 1-14. Knox, S.L. (2006) ‘Death, afterlife, and the eschatology of consciousness: Themes in contemporary cinema’ Mortality 11(3):233-252. Nagar, E. and de Vries, B. (2004) “Memoralizing on the World Wide Web: patterns of grief and attachment in adult daughters of deceased mothers”, Omega: the journal of death and dying, 49(1):43-56. Pantti M. and J. Wieten (2005) “Mourning Becomes the Nation: Television Coverage of the Murder of Pim Fortuyn”, Journalism Studies, 6(3): 301-313. Pickering, Michael and Emily Keightley (2006) “The Modalities of Nostalgia”, Current Sociology, 54(6):919-914. Roberts, P. and Lourdes A.V. (1999-2000) “Perpetual Care in Cyberspace: a portrait of memorials on the web”, Omega: the journal of death and dying, 40(4):521-545. September 11 Digital Archive: http://www.911digitalarchive.org/. Spigel, L. (2004) ‘Entertainment wars: Television culture after 9/11’ American Quarterly 56(2):235-270. Swinging Saddam (http://video.google.com/ videoplay?docid=6185219928333240724). Tait, S. ‘Autoptic vision and the necrophilic imaginary of CSI’ International Journal of Cultural Studies 9(1):45-62. Turner, G. (2000) Fame Games Cambridge University Press: Cambridge. Walter, T.; Pickering, M, and J Littlewood (1995) ‘Death in the news: The public invigilation of private emotion’ Sociology 29(1):579-596. Wark, M. (1999) Celebrities, Culture and Cyberspace: The Light On The Hill Of A Postmodern World Pluto Press: Australia. Williamson, J. (1998) ‘A Glimpse of the Void’ in Merck, M. (ed) After Diana: Irreverent Elegies Verso: London. pp. 25-28.

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Whatever happened to social class? An examination of the neglect of working class cultures in the sociology of death ABSTRACT

KEY WORDS Social class, sociology, culture, stoicism

This paper explores the development of the sociology of death. It begins by tracing some of the major trends in sociology more generally that have influenced understandings of the social impact of mortality. The question is then raised as to why sociologists of death have hitherto largely failed to research into working-class cultures of death. Following a brief discussion of some of the literature that has considered working-class practices, a number of explanations are offered for this relative neglect: that social class is no longer relevant in postmodern societies; that the creation of death studies as a specialism in sociology has isolated academics from the conceptual concerns of mainstream sociology; that the personal-political agendas of middle-class academics working in this field have shaped the preoccupations of researchers. The last of these explanations is explored in greater depth by linking work on death to the sociology of the body and that of the emotions. To examine some key social class distinctions, the assertion of working-class stoicism is contrasted with a middle-class privileging of verbal communication. The paper concludes with an appeal to sociologists of death to reinstate social class as a significant factor in understandings of the social nature of mortality. Received 19 July 2007

Glennys Howarth Centre for Death and Society University of Bath United Kingdom

Some early work on the sociology of death

A

s a relatively new field of expertise, the sociology of death, came to prominence during the 1990s. Its origins, however, can be traced to the founders of the discipline of sociology. The first work which clearly addresses issues of mortality can be located in the writings of Durkheim, who, when theorising the role of religion in society, noted that spiritual belief systems enabled societies to continue to function in the everyday world despite the threat of death: Volume 16, Issue 5, December 2007

Accepted 3 September 2007

When someone dies, the group to which he belongs feels itself lessened and, to react against this loss, it assembles .... Collective sentiments are renewed which then lead men to seek one another and to assemble together (Durkheim 1954 [1915]:339).

This theme was echoed by Peter Berger in the 1960s when he famously argued that, human societies are essentially people gathered together in the face of death (Berger 1969). For Berger, religion provided a sacred canopy under which humans sheltered again the terrors of mortality. Durkheim’s other major contribution to the field of death and dying was his classic study of suicide (Durkheim 1951 [1897]). With a focus on social integration and community, he argued that suicide was not an individual problem but a HEALTH SOCIOLOGY REVIEW

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social one. Through an analysis of suicide rates across a range of countries he proposed the theory that suicide occurred in communities with either too little or too much social integration. Thus Catholic societies had lower suicide rates than Protestant and married people lower rates than single people.

The turn from structure to agency Durkheim’s research and theorising on suicide was a forerunner of much of the quantitative research conducted in sociology in the first half of the twentieth century. This structural approach sought to measure the well-being of societies and individuals within them by studying mortality statistics. As a relatively new discipline at the turn of the twentieth century, sociology shared with the discipline of demography an interest in mortality due to its capacity to identify trends in the causes of death across populations and thus to highlight social, economic, behavioural and environmental patterns. As Prior observed, sociology ‘had discovered in death something which both reinforced and reflected the nature of the social’ (Prior 1989:7). In this respect death was, to some extent, perceived as controllable in that its causes and impact could be measured and categorised according to social variables such as age, birth cohort, geographical location, gender, and, significantly, social class. Indeed, social class (or socio-economic status as it is more commonly referred to today) was viewed as a key factor in discerning life-expectancy, health and occupational risk. This emphasis continues today in respect of health and behavioural risk factors and it is often noted that social class is a signifier of health status and mortality risk with people from lower socio-economic groups at greater risk (Townsend and Davidson 1982; Wilkinson 1996). In the UK, for example, the gap in life-expectancy between those in Social Class I and Social Class V is in the region of nine years (Hattersley 1999). This emphasis on social structure in sociological research continued throughout most of the first half of the twentieth century with mortality statistics utilised by sociologists to study the impact of social and occupational conditions

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and poverty. A focus on social class was at the heart of this approach. It was not until the 1950s that sociologists began to explore in any depth the meanings that individuals associated with dying, death and bereavement. The concern with ‘understanding’ individual motivation stemmed from the work of Weber (verstehen) (1914), Cooley (1902) and Mead (1934) and led to the formation of a new school of thought within the discipline – interactionism – which was based on the theory that individuals are not simply victims or subjects of social structure but are able to exercise agency and, through interaction with others, to actively construct their life-worlds. A focus on meaning coincided with an increased anxiety about the power of medical science to control everyday life: the medicalisation thesis (Zola 1972). In terms of death and dying, Illich (1976) argued that medicalisation had effectively dehumanised dying by perceiving of death as medical failure and, as a consequence, subjecting dying people to repeated technological based indignities in attempts to keep them alive. The concern with the medicalisation of death, coupled with increased interest in understanding individual experiences and the meanings associated with them, resulted in the 1960s in two classic sociological studies of hospital dying: Glaser and Strauss’ (1965) Awareness of Dying, and Sudnow’s (1967) Passing On: the social organization of dying. This emphasis on meaning and experience, which has characterised much of the subsequent sociological research in death and dying, has explored the way in which people construct their world. As such, it marked a significant turn from theoretical debate and empirical research into the impact of social structures (which, of necessity, included examination and analysis of social class position) to more qualitative research which took as its raison d’ètre an exploration of individual agency and meaning. Whilst many of these qualitative studies focused overwhelmingly on the disempowerment of people dying within institutions, other sociologists began to develop the argument that Western societies had become ‘death- denying’.

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This was exemplified by the loss of ‘traditional’ customs that surrounded bereavement and mourning. The sociologist Geoffrey Gorer was at the forefront of this debate (stimulating other studies such as Philippe Ariès’ (1974) Western Attitudes towards Death from the Middle Ages to the Present, and (1981) The Hour of Our Death) criticising contemporary societies for a failure to acknowledge and confront the ‘realities’ of death. Gorer (1955) argued that death had replaced sex as a taboo subject and had thus become pornographic in form. The medicalisation of dying was argued to provide further evidence of this trend where sickness had replaced death; dying occurred predominantly in institutions with professionals, patients and their families denying its inevitability. Since the 1990s sociologists have carried out a large body of work in the field of death, dying, funeral rituals, disposal practice, grief, bereavement, memorialisation and remembrance1. Policy issues highlighted by much of this research draw attention to the need to improve resources and conditions for those dying in hospitals and residential and nursing homes; to enhance understanding of, and so to improve public health measures to reduce youth suicide; to provide better services to dying and bereaved children and adolescents; and to address what is often perceived as the inadequacy of funeral rituals and ceremonies. Theorising in the field is currently dominated by the sequestration debate - that in contemporary Western societies death has been removed or sequestered from the public realm (Giddens 1991; Mellor 1993; Mellor and Shilling 1993). Sequestration is said to occur because death poses problems of meaning for individuals in modern societies and has, therefore, been removed from public space and relocated as a personal issue. Sequestration is illustrated in that the majority of people now die in institutions and grief has become privatised; confined to the family rather than rehearsed in public.

The significance of social class Having outlined, albeit briefly, some of the major theoretical and empirical trends in the sociology of death over the last century it is now time to Volume 16, Issue 5, December 2007

raise an important question for all sociologists who work in this field. The question is this: Why is it that in sociological theorising and empirical research into the nature of mortality there has been such a neglect of issues of social class? The concept of social class is fundamental to sociology and ‘… continues to be seen by many sociologists as one of the most important, if not the most important, divisions in contemporary societies’ (Taylor 2004:10). This is because analyses of social class provide insights into power and inequality in society as well as to cultural distinctions. Although there is no longer any clearly agreed definition of the concept, social class divisions are largely based on access to power in society and influenced by education, occupation and income. For example, when referring to social class in the UK, sociologists tend to rely on the Registrar General’s categorisation that divides society into socioeconomic groups ranging from Social Class I (professional) to Social Class V (unskilled) occupations. Yet, whilst socio-economic status is important, a further factor is cultural practice which, as Bourdieu (1984) suggested, is a marker of underlying class distinctions. In the context of death and dying cultural practices might relate to experiences of dying, to funeral and memorial beliefs and practices, and to ways of grieving and remembering the dead. And yet, in sociological approaches to mortality social class is rarely mentioned except in the context of social histories of upper and middleclass obsequies (e.g. Ariès 1974, 1981; Jalland 1996) or, more frequently, those that cursorily cite social class position as an indicator of health risk and life expectancy. What is missing in much of the literature is research into working-class cultures of death. There are, of course, exceptions and a trawl through publications in the sociology of death reveals a handful of studies that have either hinted at the significance of working-class experiences, or less common, have actually been based on working-class experiences. In 1950, the sociologist W.M. Kephart published a paper entitled ‘Status after Death’ that explored social class variations in funeral preferences in the Philadelphia area of the United

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States. His survey demonstrated significant differences between the behavioural patterns of upper and lower social class groups, with the middle-classes having few distinctive patterns but falling somewhere between the other two. Among his findings were that cremation was more popular among the upper classes and hardly ever used by those from the lower class; that a greater percentage of income was spent on funerals of the lower classes but that they were more inclined to take out life insurance to pay for the costs; that the time from death to disposal was shorter among the upper classes; that lower class groups were more likely to view the body of the deceased and to be interested in, and comment on its appearance. They were also more likely to engage in open displays of emotion, and to purchase flowers, particularly set piece formations such as ‘bleeding hearts’, ‘clocks’ or ‘gates’ and wreathes with phrases such as ‘beloved father’ (Kephart 1950). Kephart’s study is a rare example of sociological research that aimed to examine and clarify social class differences. In the 1960s studies of hospital dying also noted class differences but these were implicit rather than explicit to the research. So, for example, David Sudnow’s (1967) research compared the experiences of dying in two hospitals – one public and one private – thus implicitly addressing social class distinctions. Social historians – many of whom are closely associated with sociology – appear to have been a little less reluctant to concern themselves with social class in relation to death. In 1980 David Vincent used autobiographical accounts to explore experiences of love and death among working-class people in England during the nineteenth century. As Strange (2005) has pointed out, like others who have paid any heed to working-class experiences of death, his conclusion was that working-class people could not afford the luxury of intense emotion resulting from the loss of someone close to them. ‘The loss of a close relation was so bound up with the material problems of life that at worst it seemed no more than an intensification of the misery of existence’ (Vincent 1980:245).

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In keeping with his long-term commitment to researching community life in the East End of London (see for example, M. Young and P. Willmott (1957) Family and Kinship in East London), shortly before his own death Michael Young and Lesley Cullen published an insightful study of the dying experiences of working-class people (1996). My own study of the work of funeral directors (Howarth 1996) was based in a working-class community in a neighbouring area of East London. It was this ethnography that first alerted me to radical differences between the funeral practices of the middle and workingclasses and, as a consequence to question some of the critiques of the funeral industry (Albery et al 1993; Spottiswood 1991; Walter 1994; Young 1996). I came to the conclusion that these contemporary funeral reformers had little knowledge of, or interest in, the funeral rituals of working-class people (Howarth 1997). In more recent years two studies have stood out in their attempt to remind academics, and sociologists in particular, that experiences of dying, death and bereavement are mediated not only by gender, ethnicity and age but also by social class. The first of these is the work of Julie-Marie Strange (2005) who produced a detailed and rigorous exposition of experiences of death among the nineteenth century working-class poor. In so doing, she deliberately rejected the easy distinction commonly made between ‘pauper’ and ‘respectable’ working-class experiences and encouraged her readers to look deeper into the social and cultural influences that structure an individual’s grief. Her framework ‘configures a working-class culture of death as Other: working people are perceived and perceived themselves as removed from a prosperous middle-class culture. This difference was written into both the external and internal representations of their cultural practices, including those surrounding death and bereavement’ (Strange 2005:22). This framework might equally apply to contemporary working-class experiences. A further study that attempted to alert sociologists to the importance of working-class experiences of bereavement was that of Chris

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Allen (2007). As a sociologist of crime and deviance, his research into heroin use in deprived urban areas raised the question as to how working-class people coped with the intense feelings of grief that might follow bereavement. He reported that his study of the work of sociologists in this field was essentially fruitless in helping him to answer his question. The few relevant studies he found ascribed a ‘stoical getting on with life’ approach to coping with bereavement’ (Allen 2007:84). Other research into social class tends to refer to upper and middle-class experiences of death and bereavement (see for example, Jalland 1996; Walter 1999). These studies are important in furthering understanding of the values, belief systems and cultural mores that surround the experiences of higher social groups. Unfortunately, they are sometimes presented as akin to a model or framework for understanding the meanings that people from all social classes construct around their engagement with death. As Allen (2007) has pointed out, there appears to be an assumption in much of this literature that these experiences and behaviours, ‘filter down the social ladder’ (Allen, citing Walter 1999:143). There is, of course, no evidence for this assumption, especially in the light of such a dearth of research on working-class experiences of death.

Explanations for the lack of social class research It is difficult to account for the paucity of sociological research into working-class understandings of death. It is possible that some sociologists of death subscribe to the school of thought that social class is no longer relevant in contemporary Western societies. It may be that adopting a postmodern approach has resulted in a neglect of class in favour of analyses of social fragmentation within which the individual is free to construct meaningful experiences by choosing from a ‘pick and mix’ of available rituals and norms (Walter 1996). Alternatively, perhaps it is the creation of ‘death studies’ as a specialist field within sociology that has led to death sociologists becoming isolated from the Volume 16, Issue 5, December 2007

mainstream concerns of other branches of sociology. As such, key concepts such as social class have become marginalised. A further explanation could be related to the social class make-up and preoccupations of the majority of academics in this field.2 Let us explore this a little further. It is frequently the case that when sociologists conduct an enquiry into the nature of social behaviours and relationships, whether the focus is on structure or agency, they choose to investigate fields that are unfamiliar to them. In so doing, they are able to uncover patterns that are taken for granted by those familiar with the group or community being studied. So, for example, sociologists research aspects of crime and deviance (issues of youth crime, prostitution, the criminal behaviour of gangs, and so on); work and organisations (industrial behaviour, trade associations); childhood and education in schools; welfare regimes and patterns of social exclusion. More recently, specialisms within the discipline such as the sociology of the body and the sociology of emotions have brought the subject of research closer to the familiar world of researchers, all of whom have bodies and experience emotions. These specialisms have concentrated on the materiality of the individual in society arguing that our bodies and our emotions are central to the way in which we construct our identities and engage with the social world around us. The development of these fields can be linked to the rise of both interactionism and the feminist movement. However, whilst studies in the interactionist school tended towards explorations of the exotic (marijuana smokers, taxi-dancers, street gangs), feminist sociology favoured the more everyday experiences of women, for example, in the workplace, as housewives, and as mothers. With a few notable exceptions (e.g. Hooks 1982; Macdonald and Rich 1984), during the 1970s and 1980s this focus on women’s lives largely interpreted research findings through a political lens that focused on the problems of patriarchy and reflected the frustrations and demands of the predominantly white, middle-class women’s movement of the time. Notions of false

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consciousness (a term coined by Karl Marx in relation to the beliefs and behaviours of the working-class) were commonplace when interpreting aspects of women’s experiences and values that did not fit a feminist model. The turn towards interest in the body, gender and the emotions – framed in an understanding of meaning and identity construction – has been influential in the recent development of the sociology of death and dying, where, as noted earlier, studies have concentrated on the physical and emotional impact of dying, death and bereavement. In terms of dying much of this work has focused on the impact on identity of the deterioration of the ageing, diseased and dying body (cf: Bury 1982; Featherstone 1991; Hallam et al 1999; Lawler 1991; Lawton 2000; Turner 1984, 1992), and on the management of emotions in terminal illness (cf: Glaser and Strauss 1965, 1967). Research into grief, funeral preparation and ritual has also tended to privilege the body and the emotions (cf: Hallam et al 1999; Howarth 1996; Walter 1999; Young and Cullen 1996). Yet, in the same way that the early feminist sociology revolved around the lives of white, middle-class, female academics, the sociology of death has tended to interpret endof-life experiences as largely undifferentiated in their bodily and emotional impact. This is not to suggest that analyses of inequality are missing but that the emotional template on which they are based reflects the expectations of their authors. The majority of sociologists who work in this field are keen to improve experiences of death and to challenge the power of professionals. Their work has thus developed a political agenda for change. But, in so doing, it has privileged middle-class interpretations of death in society and although gendered and ethnic differences are acknowledged and respected, the ritual and emotional experiences of working-class communities tend to be relegated to a lower division, interpreted in the context of power inequalities and pervaded by a sense of false consciousness in which working-class people are depicted as the victims of medical and funeral professionals. When it comes to the engagement with death, the expression of emotion and the

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development of ritual is, for the most part, based on middle-class norms such as the importance of verbal communication (e.g., open awareness of dying; bereavement counselling) and control and individualisation of funeral and mourning rituals (e.g. proliferation of ‘alternative’ and ‘natural’ funerals; internet memorial sites). In creating innovative and, arguably, more meaningful ways of engaging with mortality, middle-class reformers (and these include death sociologists) assume, as Allen (2007) suggests, that these will ‘trickle down’ to the working-class. This approach is based on a fundamental misreading of working-class nor ms and experiences. It belies an inaccurate perception of working-class people as lacking a sophisticated understanding of death, as needing to be ‘empowered’ in order to more meaningfully engage with death, and as eager to adopt rituals that might be meaningful to those above them in the social hierarchy.

Stoicism and silence To further explore the emphasis on verbal communication and individualisation, let us consider the concept of ‘stoicism’, so often utilised in reference to working-class attitudes to dying, death and grief (Allen 2007; Strange 2005; Walter 1994; Young and Cullen 1996). The term stoicism refers to the ability to endure pain and hardship without expressing feelings. It has also been used to define the response to traumatic grief within the Samoan community (Ablon 1973) and the grief reactions of Pathan women in the UK (Currer 1986). What these latter groups have in common is that their grieving patterns are unfamiliar in societies where the norms and rituals of grief centre around verbal or physical (e.g. tears or wailing) displays of emotion. It may, however, be the case that the grief rituals employed within these communities are expressive in other ways and, therefore, the label of stoicism is effectively disguising the emotions that exist. Although it cannot be argued that white working-class styles of grief are unfamiliar, they are, nevertheless, somewhat marginalised in societies where the dominant model of grief privileges discourse. Volume 16, Issue 5, December 2007

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In working-class communities rituals that surround death and grief may not primarily focus on verbal communication. Taking funeral rituals as an example, there may actually be very little ‘talk’ prior to the funeral ceremony itself. The rituals surrounding the funeral begin when the publicly visible funeral cortège (the hearse and limousines for the chief mourners) arrives at the home of the deceased to collect the mourners. The procession of the cortège from the home to the church or cemetery chapel is ritually important, as is the ceremony itself, the time at the graveside in cases of burial, the return to the home, and the reception that follows. From the moment when the coffin carrying the deceased leaves the funeral director’s premises to the time when mourners leave to return home, is replete with opportunities for ritual: both verbal and nonverbal. The following is a short account of some of the contemporary ritual practices employed by a funeral director in the largely working-class area of Bermondsey in South East London: There are certain rituals that are specific to here … We’ll go past their favourite pub. I might go in and the landlord will come out with a glass of beer. We’ll pour a little away for absent friends and I’ll put it inside the hearse. People absolutely love it. We’ll follow the person’s favourite route, we might stop at their favourite shop. We’ll go through Millwall3; I’ll phone Millwall and they’ll get a little signed football or something, one of the directors will come out and give it to the family with their condolences and a week later they’ll write to the family. To this day I will not take anybody under the Rotherhithe tunnel. Lots of our people are buried in east London, so it would make sense, but I won’t go under the tunnel; I’ll go over the bridge. And if the bridge is closed, I’ll go to the next bridge. I’ll never take someone underground before their time. Everyone round here knows that. And if I took someone through that tunnel there would be an uproar. Now that’s ritual, that’s tradition. I have to be careful with my hat when I’m walking along: I can lift my hat, because that’s a greeting; if I tip my hat people think that

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it’s because they’re next. I never drive out of cemeteries with petals still on the hearse, because in South London, if petals fall from the back of the hearse when it leaves the grave, someone’s sure to follow. In working-class areas the funeral is still the most important event in a person’s life. And everybody turning out, with a bit of a party to take the sting off the tail at the end, is a release valve for the bereaved. You’ve got to have a good car, you’ve got to have something that the person couldn’t afford to travel in during their lifetime; it’s got to be the most important ride of his life (Albin-Dyer 2007:14-16).4

Of course, it is easily argued that this is the perspective of a funeral director, and a successful one at that. We simply do not know if AlbinDyer is correct in his assertion that people ‘love’ these ritual touches. Perhaps it is the case that funeral directors are busy ‘making up rituals’ which they expect will be meaningful to their clients: a criticism with which they are frequently charged by the funeral reformers of the middleclasses. In the contrast, the creation of new ‘alternative’ ritual among middle-class mourners is encouraged and viewed as innovative and meaningful despite the fact that, ‘secular, humanist, woodland or do-it-yourself ceremonies remain a tiny fraction of all funerals’ (Cook and Walter 2005:370). Although there is anecdotal evidence, there is currently no research that systematically enquires into the extent of satisfaction and meaning for either of these social class groupings. What is clear from Albin-Dyer’s account, however, is that although the rituals of workingclass funerals in one area of South East London might be expressive and publicly visible, they are predominantly non-verbal. In examining the linguistic and sociological distinction between ‘traditional’ and contemporary funerals, Cook and Walter (2005) draw from the work of Douglas (1970). Douglas relies on Bernstein’s theory of restricted and elaborate codes to argue that rituals employ a restricted code rather than an elaborate code of communication as they rely for their efficacy on ‘a close-knit group who know each other well and share values and beliefs, and a HEALTH SOCIOLOGY REVIEW

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particular physical context’ (Cook and Walter 2005:368). In other words, shared values within a tight-knit community negate the need to elaborate the meanings of the rituals and require only a ‘restricted code’ of communication. Yet, Cook and Walter go on to assert that ‘rituals are largely constructed from language …’ (ibid) and thus a combined sociological and linguistic understanding of ritual is essential. Their approach assumes a definition of ‘traditional’ rituals that have the features of a restricted code. In contrast, what they refer to as ‘contemporary funerals’ require an elaborate code where the emphasis on verbal communication is necessary because, ‘contemporary mourners are typically separated geographically’, comprising ‘a temporary congregation of nomads who normally do not meet, or even know, one another’ (Cook and Walter 2005:386), and, therefore, do not subscribe to shared understandings of ritual. This is an interesting distinction that could easily be adopted to distinguish the funeral rituals of working-class people living in close-knit communities from those of the ‘nomadic’ middleclasses. The funeral ceremonies of the middle-class increasingly concentrate on narratives of the deceased which celebrate his or her life and the exchange of memories among the mourners. In their research into the good death in a workingclass community, Young and Cullen (1996) provide a description of a more ‘traditional’ funeral ceremony: Kenneth had lived in the same place for the better part of his life, he was known by many local people, and the church he attended was hardly more than a stone’s throw from his home. The news got round that he had died. As a result, people filled the back rows of the church. They joined ‘the family’ who took their place in the front, 70 to 100 relatives of Kenneth and his wife, all dressed in black from head to toe, each in their different relationship to the dead man, with the immediate family at the front and the others occupying pews at the right distance from the coffin, to sing the well-known hymns and watch the well-known priest go through the proceedings.

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By present-day standards the show of solidarity was impressive and gave a measure of assurance that they were not alone to the principal mourners, who led the procession in and led the procession out on the way to the crematorium. The gathering gave to the bereaved and the children and grandchildren the sense that the death mattered to many more people than those in the immediate family (Young and Cullen 1996:184).

Young and Cullen were clearly impressed by the extent of support from the local community, although it is unclear what benchmark they were using when they suggested that the show of solidarity was impressive ‘by present-day standards’. They were, however, critical of the priest who, in relying on the basic religious funeral service rather than narrating the life of the deceased, had in their opinion left ‘the congregation cold and uninvolved’ (Young and Cullen 1996:185). Although they cite no evidence (for example from interviews with the mourners), they claim that, ‘the mourners want to hear about the person they have lost, have praise for him or her, respond to an effort to bring him or her alive again at least in words, and, by implication anyway, be led in a lament for the departed.’ (ibid 1996:185) It is the silence of the bereaved, and the failure to individualise the ceremony, that seem to jar with the researchers who are keen to improve ritual practice that may (or may not) be of value and comfort to the mourners. The lack of verbal expression, and the resounding silence around death, have contributed to the identification of stoicism among the working-class. This stoicism has been explained in various ways. Vincent (1980) saw it not only as a coping mechanism but also as a consequence of a class of people who, due to their material circumstances were unable to experience ‘pure grief’: Few of the autobiographers experienced pure grief … Almost always their experiences were mediated by the way in which the strands of their emotional and material lives were woven together, and this may provide the key to the most significant way in which they contained the experience of death (Vincent 1980: 245).

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Allen (2007), in research that demonstrated that the trauma of grief can lead to drug abuse among individuals living in deprived communities, suggested that greater access to new ‘bereavement technologies’, such as bereavement counselling, might help to support working-class people at risk. This may, indeed, be an appropriate and much needed solution to the distress of grief, but, once again it is reminiscent of a view that middle-class responses to grief provide a model – based on verbal communication – that ideally should ‘trickle down’ to the working-class. Strange (2005) provides an alternative perspective. She explores the concept of stoicism in some depth, noting that silence does not necessarily reflect a lack of expression of emotion or an inability to experience ‘pure grief’. When the impact of death is so powerful and the trauma of loss so great, there are no words to express the depth of emotion that is felt. Silence can be the most potent expression of grief. This, she argued, was recognised in public acts of commemoration following the huge loss of life during World War I. She cites Gregory’s (1994) work on the establishment of the ritual of the two-minute silence, which ‘points to the silence that signified the inexpressibility of experience: silence ‘signified everything and nothing’ (Strange 2005:269). This ritual has since become a mechanism for the remembrance of the dead, particularly for those who have died tragically, and is commonly used to acknowledge the shared nature of loss. The adoption of silence, a central feature in the identification of stoicism with the working-class, challenges the idea that middleclass grief behaviours filter down to the workingclass; quite the reverse.

Conclusion In this necessarily brief and broad discussion of the sociological neglect of working-class attitudes and experiences of death and dying it has not been possible to explore each of the fields of dying, death rituals, grief and bereavement in any depth. Suffice to say that there is a paucity of research in all these areas, and of greater concern, a danger of falling into Volume 16, Issue 5, December 2007

the trap of privileging middle-class agendas for change. There is an urgent need for further studies that explore all aspects of death behaviours within working-class communities, and a refinement of existing research to draw out social class distinctions were possible and relevant. As I have argued elsewhere (1997), I am not suggesting that working-class rituals are necessarily meaningful or satisfying. As sociologists we aim to make visible and to understand the social impact of death. Sociologists of death are also concerned to understand and to challenge power relations and to address issues of social and cultural diversity. Gendered, age and ethnic differences are now acknowledged and examined but there remains little attention paid to social class distinctions, and few suggestions that working-class ways of death might be satisfying or meaningful in any way. Working-class experiences continue, with few exceptions, to be relegated to a few sentences which point either to demographic statistics or the existence of stoicism. It would be an understatement to suggest that this is inadequate. We do not live in classless societies and although we might subscribe to the postmoder n view that contemporary communities are fragmented, with individuals constructing their own identities and rituals to match, working-class cultures continue to exist. As Walkerdine (1994) has argued: ‘[c]lass is not something that is simply produced economically. It is performed, marked, written on minds and bodies. We can ‘spot it a mile off’ even in the midst of our wish for it no longer to be there’.

That said, working-class communities are not homogeneous, they are cut across by other structural factors such as gender, ethnicity, age and regional differences; but equally, they are distinct from middle-class cultures. It has been argued by sociologists of death that in its early neglect of mortality our discipline has behaved as though we are all immortal (Walter 1993). It could equally be asserted that in our neglect of working-class experiences, sociologists of death have behaved as though we are all middle-class.

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As academics whose aim is to understand how individuals within societies make sense of death, we cannot afford to neglect, or worse still, to make unsubstantiated assumptions about the experiences of working-class people. Indeed, in conducting further research in this area we might, in fact, learn a thing or two about the meaningful engagement with death.

Endnotes 1 See Walter (1993) and 2007 (forthcoming) for excellent reviews of this work. 2 Although there is no available data to support this suggestion, it is probably the case that most academics would identify as middle-class. According to the Registrar General’s socioeconomic occupation groups, academics would fall within Social Class I. 3 Millwall Football Club. 4 This reflects the assertion made by Drakeford (1997) in his study of the erosion of state help with funeral expenses for poorer people. He makes the point that ‘cheap’ funerals might be attractive ‘for people who do not feel their whole social situation to be cheapened by a set of other assaults upon their citizenship. For poor people, the impact of such circumstances is quite different ... [T]he ceremony has a social significance of particular importance, reaffirming the meaning and purpose of a life where such qualities have been called into question’ (Drakeford 1997: 523).

References Ablon, J. (1973) ‘Reactions of Samoan burn patients and families to severe burns’ Social Science and Medicine 7(3):167-178. Alberry, N.; Elliot, G. and Elliot, J. (eds) (1993) The Natural Death Handbook Virgin: London. Albin-Dyer, B. (2007) ‘The man in black’ Funeral Service Times 12-16. Allen, C. (2007) ‘The poverty of death: Social class, urban deprivation, and the criminological consequences of sequestration of death’ Mortality 12(1):79-93. Ariès, P. (1974) Western Attitudes toward Death from the Middle Ages to the Present Marion Boyars Publishers: London. Ariès, P. (1981) The Hour of Our Death Allen Lane: London.

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Berger, P. (1969) The Social Reality of Religion Faber: London. Bourdieu, P (1984) Distinction: A Social Critique of the Judgement of Taste. Trans. R Nice, London: Routledge. Bury, M. (1982) ‘Chronic illness as biographical disruption’ Sociology of Health and Illness 4(2):167-182. Cook, G. and Walter, T. (2005) ‘Rewritten rites: Language and social relations in traditional and contemporary funerals’ Discourse and Society 16:365-391. Cooley, C.H. (1964) Human Nature and the Social Order Scribner’s: New York. Currer, C. (1986) ‘Concepts of well and ill-being: The case of Pathan mothers in Britain’ in C. Currer and M. Stacey (eds) Concepts of Health, Illness and Disease. A Comparative Perspective Leamington Spa: Berg. Douglas, M. (1970) Natural Symbols Routledge: London. Drakeford, M. (1997) ‘Last rights? Funerals, poverty and social exclusion’ Journal of Social Policy 27(4):507-524. Durkheim, E. (1951) [1897] Suicide: A Study In Sociology Free Press: New York. Durkheim, E. (1954) [1915] The Elementary Forms of Religious Life (trans. J.W. Swaine) Allen and Unwin: London. Field, D.; Hockey, J. and Small, N. (1997) Death, Gender and Ethnicity Routledge: London. Featherstone, M. (1991) ‘The Body in Consumer Culture’ in M. Featherstone; M. Hepworth and B.S. Turner (eds) The Body. Social process and cultural theory Sage: London. Giddens, A. (1991) Modernity and Self-Identity. Self and Society in the Late Modern Age Polity Press: Cambridge. Glaser, B. and Strauss, A. (1965) Awareness of Dying Aldine: Chicago. Glaser, B. and Strauss, A. (1967) Time for Dying Aldine: Chicago. Gorer, G. (1955) ‘The Pornography of Death’ Encounter October. Gregory, A. (1994) The Silence of Memory: Armistice Day, 1919-1946 Oxford University Press: Oxford. Hallam, E.; Hockey, J. and Howarth, G. (1999) Beyond the Body. Death and Social Identity Routledge: London. Volume 16, Issue 5, December 2007

Whatever happened to social class? An examination of the working class in the sociology of death Hattersley, L. (1999) ‘Trends in life expectancy by social class - an update’ Health Statistics Quarterly 02:6-24. Hooks, B. (1982) Ain’t I A Woman: Black Women and Feminism Pluto Press: London. Howarth, G. (1996) Last Rites: The Work Of The Modern Funeral Director Baywood: Amityville, New York. Howarth, G. (1997) ‘Is there a British way of death?’ in K. Charmaz; G. Howarth and A. Kellehear (eds) The Unknown Country: Death in Australia, Britain and the USA Macmillan: Basingstoke. Illich, I. (1976) Limits to Medicine Marion Boyars: London. Jalland, P. (1996) Death in the Victorian Family Oxford University Press: New York. Kephart, W.M. (1950) ‘Status after Death’ American Sociological Review 15(5):635-643. Lawler, J. (1991) Behind the Screens. Nursing, Somology And The Problem Of The Body Churchill Livingstone: Melbourne. Lawton, J. (2000) The Dying Process: Patients’ Experiences Of Palliative Care Routledge: London. Macdonald, B. and Rich, C. (1984) Look Me in the Eye: Old Women, Aging and Ageism The Women’s Press: London. Mead, G.H. (1934) Mind, Self and Society: From The Standpoint Of A Social Behaviorist University of Chicago Press: Chicago. Mellor, P. (1993) ‘Death in high modernity: The contemporary presence and absence of death’ in D. Clark (ed) The Sociology of Death, Sociological Review Monograph Blackwell: Oxford. Mellor, P. and Shilling, C. (1993) ‘Modernity, self identity and the sequestration of death’ Sociology 27:411-32. Prior, L. (1989) The Social Organization of Death. Medical Discourses And Social Practices In Belfast Macmillan: Basingstoke. Spottiswood, J. (1991) Undertaken with Love Robert Hale: London. Strange, J-M. (2000) ‘Death and dying: Old themes and new directions’ Journal of Contemporary History 35(3):491-499. Sudnow, D. (1967) Passing On: The Social Organization of Dying, Englewood Cliffs: Prentice Hall. Taylor, S. (2004) Introducing Sociology Halovine: Twickenham.

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Townsend, P. and Davidson, N. (1982) Inequalities in Health Penguin: Harmondsworth. Turner, B.S. (1984) The Body and Society: Explorations In Social Theory Basil Blackwell: Oxford. Turner, B.S. (1992) Regulating Bodies: Essays In Medical Sociology Routledge: London. Vincent, D. (1980) ‘Love and death in the nineteenth-century working class’ Social History 5(2):223-247. Walkerdine, V. (1994) Femininity as performance. In L. Stone with G. M. Boldt (eds), The Education Feminism Reader, New York: Routledge. Walter, T. (forthcoming 2008) Sociology Compass, Vol, 2, No. 1. Walter, T. (1990) Funerals: and How To Improve Them Hodder and Stoughton: London. Walter, T. (1991) ‘Modern death - taboo or not taboo?’ Sociology 25(2):293-310. Walter, T. (1993) ‘Sociologists never die: British sociology and death’ in D. Clark (ed) The Sociology of Death Sociological Review Monograph, Blackwell: Oxford. Walter, T. (1994) The Revival of Death Routledge: London. Walter, T. (1996) ‘Facing death without tradition’, in G. Howarth and P. Jupp (eds.) Contemporary Issues in the Sociology of Death, Dying and Disposal, Basingstoke: Macmillan. Walter, T. (1999) On Bereavement: The Culture Of Grief Open University Press: Buckingham. Weber, M. (1968) Economy and Society Volumes I, II and III, Bedminster Press: Totowa, NJ. Wilkinson, R.G (1996) Unhealthy Societies: From Inequalities To Well-Being Routledge: London. Young, M. (1996) ‘What a rotten way to go’ The Guardian Newspaper 31 January: 2. Young, M. and Cullen, L. (1996) A Good Death. Conversations with East Londoners Routledge: London. Young, M. and Willmott, P. (1957) Family and Kinship in East London, London: Routledge & Kegan Paul. Zola, I. K. (1972) ‘Medicine as an Institution of Social Control’ Sociological Review 20:487504.

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Closing in on death? Reflections on research and researchers in the field of death and dying ABSTRACT KEY WORDS Sociology, sequestration, reflexivity, Romanticism, death, bereavement

This paper provides a critical overview of recent arguments within the field of research on death and dying. In so doing, it explores reasons for researchers choosing to work in this area, and how these might relate to questions of personal experience and the wider cultural and social contexts of researchers’ everyday lives. It discusses not only the sequestration of death thesis, but also arguments which suggest there has been a revival of Romanticism associated with the maintenance of bonds between the living and the death. Finally, it explores the critique that the anomic terror arguably associated with death, has been assumed rather than examined. Received 30 March 2007

Jenny Hockey Department of Sociological Studies University of Sheffield United Kingdom

T

his paper examines social science research activity around death and dying from the Second World War onwards. Its critical appraisal of key arguments within that body of work also pays attention to the personal implications of working within this area for the individuals concerned. However, rather than quasi-psychological speculation about researchers’ personal motivations, it locates their work within the wider social trends which have arguably re-shaped the human encounter with mortality during the twentieth and early twentyfirst centuries. These include the sequestration of death via, for example, the professionalisation of death care; the loss of meta-narratives which might provide social and personal meaning in the face of human mortality; a ‘return of the repressed’ which allows death to be contemplated

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Accepted 25 July 2007

but via the death of the (female) other; the emergence of a culture of enchantment within which Romanticism has been rekindled and where remembrance and memorialisation practices oriented towards ‘continuing bonds’ (Klass et al 1996) with the dead have received growing social legitimisation; and a re-working of meta-narratives around death and dying which support beliefs and practices deriving from alternative, new age or non-Western belief systems such as Buddhism. Through reflexively examining the practice of researchers in this field, the paper revisits key themes which have been core to academic work on death and dying since the early 1990s.

Being a death researcher Those who work on death and dying are likely to have been asked why they chose this topic. And this question can appear to contain an implicit accusation. Surely it must be depressing; maybe we have dubious motivations; at best we are sad down-beat individuals, at worst voyeurs of the macabre? In the preface to her ethnography of hospice care in the UK, social anthropologist Julia Lawton says: Volume 16, Issue 5, December 2007

Closing in on death? Reflections on research and researchers in the field of death and dying For some, the mere mention that I conducted a study in a hospice provides a terse, ‘oh that must be very depressing’ and a prompt change of subject. Others still, I know, actively avoid me. The label ‘Dr Death’, and the stigma associated with it, is one that I have carried with me right from the study’s inception (Lawton 2000:viii).

The perception that making work on death and dying an intellectual endeavour required some justification was acknowledged as long ago as 1907 in a study of the practice of double burial among the Dayak people of Borneo. Here, the social anthropologist, Robert Hertz, observed that: We all believe we know what death is because it is a familiar event and one that arouses intense emotion. It seems both ridiculous and sacrilegious to question the value of that intimate knowledge and to wish to apply reason to a subject where only the heart is competent (Hertz [1907] 1960:27).

Hertz was writing at a time when death was indeed familiar, his own following soon after, in action during the First World War. By the end of the twentieth century, however, many Westerners had minimal personal experience of death, dying and bereavement. Increasing longevity brought about by improvements in public health and medicine went alongside the professionalisation of care of people who were dying, dead and indeed bereaved, and the abolition of capital punishment in the UK (see Jupp and Walter 1999). It is within this context that research on death and dying has been developing, particularly since the Second World War (Small 2001). While Hertz anticipated criticism for ‘apply(ing) reason … where only the heart is competent’, however, it is the competence of the heart that is no longer taken for granted. Now, it is the researcher’s deliberate self-exposure to the loss and pain of others, whether in prospect or in retrospect, which may come under scrutiny. Lawton makes reference to this experience when describing participant observation in a hospice: Volume 16, Issue 5, December 2007

… I spent a great deal of time in close emotional and physical proximity to patients and their families … [o]ver 200 patients died during the period of fieldwork, and the accumulative effect of witnessing so many deaths, and the deterioration that often went on beforehand, caused me to feel very despondent by the time I had completed the research (Lawton2000:viii).

What Lawton chose to take on in pursuing work of this kind has parallels in other researchers’ experiences. For example, forensic anthropologist, Clea Koff (2004), worked within a team investigating the aftermath of genocide in Rwanda. She describes picking through bodily remains which bore the marks of the machetes used to murder many thousands of people. In the field she distanced herself from these bodies through the way she managed her clothing. She kept one bra for use at work; and then stored it in a plastic bag because it carried the ineradicable smell of decomposition. One was for wearing after work, but at times when she could not get a thorough shower; and one which she described as ‘sacred’, was used only ‘after a hot shower with full exfoliating, scented scrub-down’. Returning to California, she felt disoriented and would waken to imagined genocide scenarios which, she says, ‘makes it hard for me to breathe, so I just lie there, trapped by the darkness and the questions until daylight and exhaustion lead back to sleep’ (Koff 2004). Koff’s experience might seem extreme, but in the relatively ‘homely’ setting of a hospital mortuary in the North East region of England, Kristie Hubbard, a mature undergraduate, chose anthropological fieldwork which also proved disturbing. In an appendix to her dissertation she says: … the images I saw in observing the first postmortem remained with me for a long time … in conversation with friends and family, I would be imagining how they would appear with the tops of their heads removed and their organs exposed … I found it difficult to look down at my own body upon undressing without visualising a cut from my throat to

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As an anthropologist, I too worked within close proximity to death, opting for a participant observation study of ageing and death in a UK residential home which involved extended contact with the ageing body (see Hockey 1990). My field notes describe experiences similar Hubbard’s: My body, as I removed work clothes to collapse in dungarees and slippers, seemed strangely like the thin, wrinkled, elephant-like old women’s bodies and my hands, taking off tights, seemed distant and not so unlike the arthritic, fumbling hands I’d watched in toilets and bathrooms all day (unpublished field notes).

Identification with the people who become research participants is clearly evidenced in these data. That which makes an individual, or their corpse, social is after all the focus of our interest and as such constitutes a powerful point of recognition. Koff, for example, describes finding a child’s pink dummy near its skeletonised remains on a hillside at a distance from other bodies. This prompted extended discussion with a fellow worker about how the child might have died in isolation from everyone else. Medical anthropologist, Margaret Lock’s (2002), study of organ transplantation involved observing surgical procedures. Describing the preparation of a body for organ harvesting, she says: The nurses turn to the patient and remove all the drapes, except for one covering the groin. They place the arms on supports at right angles to the body. The donor had recently painted her fingernails a bright red; now, in death, they appear incongruous (Lock 2002:18).

Such details humanise the body and prompt identification. This in turn raises questions as to what stimulates researchers to undertake their projects, particularly those working at postgraduate level who have a relatively open choice. Not only are they exposing themselves to disturbing physical and emotional experiences; they are also likely to suffer in terms of career

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development. In 1998, Allan Kellehear described the medicalised focus of Australian sociological interest in death and dying and its neglect of questions to do with dying, identity and meaning, with psychical happenings and mystical experiences. These areas of popular interest, as he describes them, attract little professional response or indeed research funding. If researchers choose to embrace these areas there are career implications. Like others, I have failed to be short-listed for senior posts because my academic interests were seen to be too narrow. Dying and being bereaved are apparently the prerogative of some kind of minority.

Research in cultural and social context The personal and professional experiences described above might seem to be simply byproducts of working in this particular ‘sensitive area’ (see Lee 1993), experiences which need managing through good supervision. To limit ourselves to this conclusion, however, is not only to ignore the question of why someone chose to work in this area, but also to treat death and dying as an intrinsically distressing source of emotional pain. Against this essentialist approach, I am arguing for a more sociological approach which reflexively incorporates the researcher’s choices and subsequent responses into the body of data under investigation. For example, introducing his qualitative study of the practice of surgery, Nick Fox (1992) draws out the analytic implications of how it felt to witness operations and even lend an occasional hand. Despite his anxieties about witnessing ‘the unpleasant side of opening bodies and resecting organs’ (Fox 1992:11), he found that the surgical coverings over the body helped sustain distance from the person being operated on. Reflecting on this, he says: ‘I think that I probably experienced the same distancing that other surgical personnel find’, going on to argue that covering the body contributes to ‘the cavalier way patients are sometimes treated or talked about when on the operating table’ (Fox 1992:11). Lawton (2000), similarly, describes her initial naiveté about death and the shock she experienced when entering a hospice. She Volume 16, Issue 5, December 2007

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situates her response within the social context of Westerners’ pervasive if unrealistic hope for a peaceful death. Thus, as she describes, the chronic suffering which can precede a cancer death, for example, was not only missing from media images of death – the instant gunning down of male villains and the elegant expiring of beautiful heroines – but also glossed over in the accounts of dignified death that hospice professionals produced: A somewhat romanticised conception of dying patients resting comfortably in bed, mentally alert, calm and reassured is all too prevalent within this literature (Lawton 2000:vii).

Both Fox and Lawton, then, are working within a relatively new methodological tradition of reflexivity where the situated nature of the social science researcher and their project is taken account of and indeed contributes to the final body of data (see Clifford and Marcus 1986). In theoretical terms, their work reflects the first theme to be addressed in this paper’s review of work on death and dying: the argument that death has been denied, sequestrated or become taboo during the twentieth century. Authors such as Geoffrey Gorer (1965), Ivan Illich (1976), Phillipe Aries (1981), Norbert Elias (1985), Zygmunt Bauman (1992), and Philip Mellor and Chris Shilling (1993) have offered evidence for the use of these particular terms – and indeed disagreed as to which term is most appropriate. However, they share a consensus that within the human encounter with death, those members of Western societies who lack any professional involvement in this area have somehow been deprived of agency, the result of social changes since the beginning of the twentieth century: for example, secularisation and the loss of religious meta-narratives, moder nisation and the breakdown of local communities, the professionalisation of care of people who are dying, dead or bereaved, the increasing longevity brought about by improvements in public health and medicine, and a diminishing scale of death in warfare in the UK. If it is professionals who now stand between the lay person and the prospect, experience and aftermath of death, then those Volume 16, Issue 5, December 2007

professionals too have been exposed to the scrutiny of researchers who have demonstrated the social mechanisms through which ‘death workers’ achieve some distance from human mortality. For example, funeral directors ‘objectify’ the corpse whilst they are preparing it for disposal, re-animating it only as it returns to the social context of the family or of friendship (Howarth 1996); and conversely nurses may generate a onesided conversation with a corpse to mask the occurrence of a death on a ward (Sudnow 1967). If Western societies’ non-professional members lack agency when it comes to death, then those who choose this area as a research field are somehow working against the grain. To what extent might a social context of distancing and sequestration provide the motivation for such a choice? In addressing this question, we can begin to separate out some of the dimensions of ‘sequestrated death’. If we begin with the role of personal experiences of bereavement in prompting this choice of topic, we encounter the ‘accusation’ that the researcher has unfinished business which perhaps should be dealt with via a counsellor. The ‘application of reason’ can be read as evidence of the heart’s incompetence. This interpretation – whether implied by a friend or colleague, or fretted over by the researcher themself – exemplify what Tony Walter (1999) terms ‘clinical lore’, the popular belief that not only should bonds with dead individuals be broken, but that painful feelings of loss need to be expressed, ideally through crying, if bereaved people are to ‘move on’ and regain mental and physical well-being. From this perspective, personal experiences of sequestrated death may be seen to disrupt the ‘grief process’. However, 1990s’ critiques of this model of grief (see for example, Walter 1996) suggest a far broader range of responses to bereavement; for example, biographical reconstruction, a more cognitively-directed mode of processing the loss and one which may be oriented towards the making, rather than breaking of bonds (see Stroebe et al 1996). In this way, deciding to work on bereavement can bring to the surface prevailing cultural interpretations of grief, as well as the system of lay ‘health’ beliefs as to how such experiences

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should be managed. More than this, though, like many research questions, those bearing on death and dying may be rooted in personal experiences which, at the time, were becoming a focus for critical thought and indeed action within popular culture and academic argument. I have described the deaths of my grandfather and mother as starting points for the questions I asked about Westerners’ lack of agency in relation to both the prospect and the experience of death (see Hockey 1990). Excluded as a child from participation in my grandfather’s hospital death in 1955, I then helped exclude my mother from knowledge of her diagnosis of life-limiting cancer in 1966, on the grounds that her hopes for recovery should be supported. Ten years later, in 1978, I chose ‘attitudes to death’ as a topic for an undergraduate dissertation after witnessing the bewildered responses of friends to the fatal car accident which overtook one of our group. It was after these firsthand experiences of ‘secondhand’ deaths, made distant through protective professional and familial strategies, that I began to ask how my own cohort of young adults had found themselves without a set of shared understandings about managing the idea and the experience of (sudden) death. In the work which followed, I took on the sequestration thesis and examined both the distancing of death – in residential homes for elderly people – as well as what Walter subsequently described as ‘a massive revival of interest in developing new ways of talking about death’ (1994: opening note), something I explored via the practices of hospice care and bereavement counseling. It was during this period that psychiatrists John Hinton (1967) and Colin Murray Parkes (1972) began to publish accounts of dying and bereavement, key works among a whole range of material generated by professionals for readerships which extended beyond their immediate disciplinary circles. Their publications were paralleled by development such as bereavement counselling in the late 1950s, and the opening of the first modern hospice in 1967 (see Small 2001; and Small and Hockey 2001, for full accounts of these trends). Experiences of death-at-a-remove can therefore trigger research questions. In addition,

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a sudden bereavement may energise ongoing projects in this area and make the need for completion more urgent. Again this response is instructive in relation to a broad sequestration thesis. Bauman (1992) argues that death threatens meaning itself, that human beings cannot manage the void which is death. In his view, modernity constitutes a set of conditions within which individuals can ‘forget’ about their own mortality by concerning themselves with systems of control such as health care, risk management and insurance. These displace the inevitability of death, substituting more achievable goals such as maintaining good health. Bauman (1992) therefore suggests that culture, as a set of beliefs and practices, engages human beings in ways which diffuse knowledge of the arbitrariness of both life and death. Rather than contemplating the impermanence of the human condition, individuals busy themselves with durable creations that will survive them: children, money, possessions, products such as gardens, paintings, family albums; and academic books. As well as the issue of how distancing strategies, such as the professionalisation of death care, might undermine individuals’ sense of personal agency when someone close dies, making sense of their absence has arguably become more problematic within the conditions of high modernity. If the contingent nature of meaning-making is something which intrigues us generally, as social scientists, then, in the views of authors such as Peter Berger ([1967] 1990) and, more recently, Anthony Giddens (1991), death provides the ultimate context within this activity can be witnessed. Within the conditions of modernity, Elias (1985) argues, we encounter death in public, not as members of collectives but as confused individuals who lack a formula for expressing respect or feelings of loss outside the privacy of our own homes. Faced with our own deaths we become even more isolated and disoriented, having no system or story through which to make sense of – or repair – what should be our ongoing life history. Other people, we discover, are similarly unsure how to approach us, having no taken-for granted mode of interacting.

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If, as social scientists, we are persuaded by such arguments, can our intellectual engagement with death and dying be understood as a way of filling the difficult gap left behind when modernist meta-narratives cease to persuade us? Is the subplot to our work an attempt to answer Meaning of Life questions? As noted, Bauman (1992) sees this as the sub-plot to almost everything we do, the mainspring of culture. Death itself, he says: ... cannot be perceived; still less visualised or ‘represented’ … There is no ‘something’ which is death; nothing in which the stretched intention of the subject struggling for perception would rest, where it could cast its anchor. Death is an absolute nothing and ‘absolute nothing’ makes no sense (Bauman 1992:2).

This sociological perspective is echoed within other representations of death which were generated during the second half of the twentieth century. In 1968, Tom Stoppard included the following lines in his play, Rosencrantz and Guildenstern are Dead: No, no. It’s not like that. Death isn’t romantic … death is not anything … death is … not. It’s the absence of presence, nothing more … the endless time of never coming back … a gap you can’t see, and when the wind blows through it, it makes no sound.

Glad to be alive? This discussion of personal experiences of sequestrated death has explored the notion that the researchers’ choice to work in this area might somehow connect with either a lack of agency or control when someone close dies, or with a disturbing sense of meaninglessness or ontological insecurity (see Giddens 1991). This is not to limit understanding of that ‘connection’ to arguments for the secret repair of psychological damage under the cover of ‘the application of reason’. Indeed, these arguments, as suggested, are themselves revealing of recent beliefs and practices. Here, we move on to consider another perspective on social science research on death and dying. This too can be broadly located within Volume 16, Issue 5, December 2007

the sequestration thesis, yet it suggests that rather than seeking to somehow overcome distancing strategies, research into the experiences of others can allow an otherwise overwhelming dimension of human existence to be lived with. Death, like the sun, cannot be gazed upon with a steady eye, as La Rochefoucauld ([1678] 1967) pointed out. Yet, as both Bauman (1992) and Elizabeth Bronfen (1992) argue, knowledge of one’s own mortality cannot be forgotten or repressed. From this perspective, then, gazing upon death ‘with a steady eye’ can constitute some kind of nagging imperative which draws, drives and repeatedly defeats us. Until the next time. And so becomes our life’s work. As noted above, Bauman’s (1992) discussion of death emphasises its unknowable nature, one which makes it ‘the absolute other of being, an unimaginable other’ (1992:2). He also suggests that we assume that we can know death because we observe the death of others, that is, we can know death by proxy. While this knowing-byproxy can simply intensify the imperative to know more directly, it can also become a way of living with death at a distance. Bronfen (1992) makes the proliferation of images of the dead female body in Western art and literature from the eighteenth century onwards a starting point for discussing such issues. She argues that by foregrounding the deaths of young women, death itself was being made accessible, but by proxy. Within patriarchal societies it was the death of the other – the woman – and not the self, which was being contemplated. Thus, she argues that such images ‘repress by localising death away from the self, at the body of a beautiful woman, at the same time that this representation lets the repressed return, albeit in a disguised manner (1992:xi). In a sense this position is the obverse of arguments which suggest that awareness of death and its unknowable nature drive us on, only to be turned back repeatedly when we venture into areas which are too close for comfort. Here the death of the other provides a kind of comfort zone, a form of social distance which reassures us that if the image we contemplate is someone other than us, then it is not us who are vulnerable to death, or at least, not at the moment.

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This process parallels our possible response to media reports of accidental or premature deaths which we may scan for the careless acts which other people are prone to. We, however, know better and are thus reassured that our own mortality is in remission. If Bronfen (1992) argues that a two-level process is in operation when we witness images or accounts of other people’s deaths, we can understand this in terms of achieving some comfort through the belief that, as Bronfen says, ‘I am the spectator/survivor of someone else’s death, therefore I can tell myself there is no death for me’ and, importantly, at the same time they remind us, again in Bronfen’s words, that ‘someone else is dead, therefore I know there is death’. As we interview or observe, we can be seen to follow a similar path in that we are accessing the deaths or bereavements of other people: finding out about death, whilst remaining alive and not immediately bereaved ourselves.

Emotionality legitimated In reflecting upon death and dying as a chosen field of research this paper has foregrounded what can broadly be referred to as a sequestration thesis. This can be compared with a rather different way of thinking about what it is that we want to know about death and dying. For many social scientists, interviews provide intense absorption into the heightened emotionality of other people’s life crises. Conference papers which include material of this kind command attention and stay in the memory. This engagement with emotionality, and particularly the individualised nature of the material which constitutes our starting point in social analyses, has parallels with the increasingly explicit concern with the expression of feelings through the material culture surrounding the disposal of the dead and their memorialisation. Visits to UK cemeteries demonstrate a new growth in informal memorialisation at the grave site. On scraps of paper, greetings cards and laminated letters, we find expressions of grief directed towards individuals who are dead. The language and imagery drawn upon often parallels expressions of love exchanged between people who are living.

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Julie Rugg (1999) has argued that such practices reflect a contemporary culture of death which is in many ways a revival of Victorian Romanticism. This perspective contrasts with the sequestration thesis, even though it could be argued that the selective distancing of the deterioration of the body during illness, and its decay after death, enables the romanticisation of other dimensions of death and dying: just as eighteenth and nineteenth century urbanisation provided a context from which spiritualised imagery of Nature could be generated. Rugg (1999) describes how Romanticism stressed the uniqueness of the individual, privileged affective ties within the nuclear family, and sanctioned emotional expressivity at their death. The first significant monument to the death of a child appeared in the late eighteenth century and similar statuary memorialised romantic bonds between husbands and wives. It was within the natural landscape that intense feelings might be expressed and stimulated; and heaven became a site where lovers and family members were reunited after death, rather than a focus for divine worship. In her romantic novel, Wuthering Heights ([1847] 1985), Emily Bronte’s leading male character, Heathcliffe, longed to be buried with his lover Cathy, so time could dissolve their bones into an eternal embrace. Arguments that Victorian Romanticism has been revisited within the contemporary (material) culture of death, disposal and memorialisation are evidenced in empirical work on the destinations of ashes which have increasingly been removed from UK crematoria for informal disposal since the 1970s (see Prendergast et al, 2006). Here, the choice of natural landscapes and the elements of water and wind emerge as important features of such disposal strategies; along with evidence of a desire to maintain and animate strongly emotional relationships with dead individuals; to visit and potentially cultivate sites of disposal; to be reunited with someone close, either through an eventual mingling of ashes or in heaven. In the wider cultural environment there is a striking parallel between the tomb erected for the French romantic

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philosopher, Jean-Jacques Rousseau, in the carefully staged ‘natural’ environment of the lake island of Ermenonville following his death in 1778, and the island grave of the late twentieth century’s most magically romantic heroine, the tragic Diana Princess of Wales. Other examples of empirical evidence for this argument include work on patterns and practices associated with visiting graves (see Bradbury 2001; and Francis et al 2005), and on the institutionalised ritualisation of memory in practices such as the candle service for parents bereaved of children at Alder Centre at the Royal Liverpool Children’s NHS Trust (see Heslop 2001). This body of work reflects arguments noted above, which suggested that new models of grief (Walter 1996) had sanctioned the maintenance of ‘continuing bonds’ (Klass et al 1996) between people who were living and dead. In the case of work on the destinations of ashes removed from crematoria for informal disposal (Prendergast et al 2006), some interviewees chose not to have their data anonymised. In using their own names, and those dead family or friends, interview material, like the ashes themselves, was being made to stand as a memorial for the person who has died. In this setting, anonymity became an anathema. Rather than the collectivising of remains at the cemetery, or the submersion of the individual within an aggregated body of data, the fostering of personal identity and individual memory was a primary concern. This raises the question as to whether a reciprocal process was unfolding. Just as participation in research can become an element of a broader memorialising strategy, so researchers’ absorption in other people’s heightened affective experience may represent participation in contemporary Romanticism, a desire for intense individualised emotion, albeit at a remove.

A new age of death? In discussing the proliferation of research on death and dying, this paper has critically appraised its key arguments, locating the choices and the responses of researchers within the Volume 16, Issue 5, December 2007

context of these themes. They included sequestration, the breakdown of modernist metanarratives, the representation and contemplation of death-at-a-distance, and the practice of emotional expressivity within a romantic framework. Alongside this work can be placed a proliferating popular market for books and articles which describe personal experiences of life-limiting illness, death in violent circumstances, bereavement and memorialisation. Dina Rabinovitch reported that her initial proposal for a book about her ongoing experience of cancer was rejected on the grounds that ‘the cancer memoir is a crowded market’ (2007:5). In parallel with popular and academic writing, films and TV programmes have addressed the dynamic nature of Western deathways. Practice itself has changed and continues to do so, in for ms ranging from the introduction of bereavement counseling and hospice care, through to the growth of alternative funeral officiants, DIY funerals and new methods of disposal, from natural burial through to the freezedrying of the corpse. Not only do these changes reflect attempts to undermine the sequestration of death and to recover personal, familial and community agency, they also point towards the influence of alternative, non-Western models of human life and death. These are evidenced in the work of the Natural Death Centre which was set up in London in 1992 and which acts as a conduit for information about alternative ways of dealing with death, both practically and conceptually. This raises the final question as to the scope or influence of alternative perspectives such as these within academic research in this area. While critiques of positivism and modernist research paradigms have paved the way for a more reflexive social science, exemplified in the validation of autobiography as a starting point for academic work (Okely and Callaway 1992) and in the blending of academic and literary styles of representation (Ellis and Bochner 1996), to what extent do these trends represent a radical critique of modernist scientific rationality? Within the range of non-Western belief systems which inform the work of the Natural Death Centre,

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Tibetan Buddhism has played an important role (see Albery et al 1993). While this may provide the basis for particular spiritual orientations towards death, can it inform the direction of academic work? Hugh Willmott (2000) has critiqued the way in which work on death and dying has prioritised its sequestration via institutions such as hospitals, funeral directing and cemeteries, along with its implications for the everyday lives of people who are dying or bereaved. In so doing, he suggests, the implications of death for social action or conduct have been neglected. His thesis, provocatively, argues that when the sequestration thesis makes personal and institutional ‘coping strategies’ its focus, the notion that death equates to chaos and indeed anomic terror is taken for granted. Only through the fragile constructions of human society and culture can this threat be staved off: ‘Every human society is, in the last resort mean and women banded together in the face of death’ (Berger 1967:51). What Willmott argues, however, is that anomic terror in the face of death can better be understood as: ... the projected loss of what we (commonsensically) know, or believe, ourselves to be: the socially constructed sense of self-identity that arises simultaneously with participation in modern social institutions (Willmott 2000:656).

Thus, to quote him further, ‘ontological and existential anxieties … are not universal, or endemic, to the human condition but, instead, are expressions of the socially organised privileging of a separation between wo/man and world’ (Willmott 2000:657). What Willmott advocates is a perspective which finds echoes in the Tibetan Book of the Dead and in Carlos Castaneda’s account of the teachings of the Yaqui sorcerer, don Juan. Here death is cast in the role of advisor and the social scientist who works from this perspective explores social identity and social institutions in a different and more playful fashion which does not assume their defensive function. In effect the project advocated is the discovery of how death got its bad name in Western circles.

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Conclusion As mortal beings, researchers in the area of death and dying live with the knowledge of the own mortality and with retrospective or prospective experiences of bereavement. The period through which much of their work has been developed has seen changes in the cultural, social, spiritual and economic framing of death. In part this work reflects contemporary academic and commonsense theorisations; in part its questions stem from researchers’ direct participation in the changing nature of the human encounter with death. In recognising that choices to work in this area have been made, and that these have potential emotional, social and indeed professional costs, this paper asks how we might understand such decisions. In addition, it acknowledges the sometimes suspicious responses of others – and indeed of researchers themselves – to their practice. In so doing, it has explored popular constructions of death, dying and bereavement that underpin notions of an appropriate mode of dealing with the uncertainties and distress associated with it. Such beliefs and practices have themselves been a focus for academic research; and indeed the researcher themself contributes to particular ways of making sense of them. Possible reasons for such choices have been offered here. They do not constitute one single interpretation or argument. Instead they demonstrate the mutability and diversity of contemporary deathways. As such, they conform to what Walter (1994) terms neo-modern death, the recourse to the expert systems of modernity which have, in part, been blamed for the sequestration of death; combined with a postmodern prerogative to privilege emotionality and a more personal choice of death-related narrative and practice. In sum, I am suggesting that reflection upon our choices and our responses to data can be a resource, or a source of data, which can reveal us to ourselves as we inhabit the orientations towards mortality and loss which our own cultures offer us. If other people’s experience is endlessly absorbing, is this not because of a profound identification with events we know that we have, or will encounter ourselves. And once we engage with other people’s stories, can we simply sit on Volume 16, Issue 5, December 2007

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the sidelines, as if none of this affected us? Or do we wake in the night to thoughts and feelings which remind us of the impermanence of our embodied life?

References Albery, N.; Elliott, G. and Elliott, J. (eds) (1993) The Natural Death Handbook Virgin: London. Aries, P. (1981) The Hour of Our Death Allen Lane: London. Bauman, Z. (1992) Mortality, Immortality and Other Life Strategies Polity Press: Cambridge. Berger, P. [1967] (1990) The Sacred Canopy. Elements of a Sociological Theory of Religion Anchor Books: New York. Bradbury, M. (2001) ‘Forget me not: Memorialisation in cemeteries and crematoria’ in J. Hockey, J. Katz and N. Small (eds) Grief, Mourning and Death Ritual Open University Press: Buckingham. Bronfen, E. (1992) Death, Femininity and the Aesthetic Manchester University Press: Manchester. Bronte, E. [1847] (1985) Wuthering Heights Penguin Classics: London. Clifford, J. and Marcus, G.E. (1986) Writing Culture. The Poetics And Politics Of Ethnography University of California Press: Berkeley. Elias, N. (1985) The Loneliness of the Dying Blackwell: Oxford. Ellis, C. and Bochner, A.P. (1996) Composing Ethnography: Alternative Forms of Qualitative Writing Altamira Press: Walnut Creek. Fox, N. (1992) The Social Meaning of Surgery Open University Press: Buckingham. Francis, D.; Kellaher, L. and Neophytou, G. (2005) The Secret Cemetery Berg: Oxford. Giddens, A. (1991) Modernity and Self Identity Polity Press: Cambridge. Gorer, G. (1965) Death, Grief and Mourning in Contemporary Britain Cresset Press: London. Hertz, R. [1907] (1960) Death and the Right Hand Cohen and West: London. Heslop, J. (2001) ‘A place for my child: The evolution of a candle service’ in J. Hockey, J. Katz and N. Small (eds) Grief, Mourning and Death Ritual Open University Press: Buckingham. Hinton, J. (1967) Dying Penguin: Harmondsworth.

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Hockey, J. (1990) Experiences of Death. An Anthropological Account Edinburgh University Press: Edinburgh. Howarth, G. (1996) Last Rites. The Work of the Modern Funeral Director Baywood: New York. Hubbard, K. (1998) Cultural and Biomedical Views on the Dead: A View from the North East (University of Durham, unpublished dissertation). Illich, I. (1975) Medical Nemesis. The Expropriation of Health Caldar and Boyars: London. Jupp, P.C. and Walter, T. (1999) ‘The healthy society: 1918-98’ in P.C. Jupp and C. Gittings (eds) Death in England. An Illustrated History Manchester University Press: Manchester. Kellehear, A. (1998) ‘Guest editorial: Death, sociology and public health in Australia’ Mortality 3(2):109-110. Klass, D.; Silverman, P.R. and Nickman, S.L. (1996) Continuing Bonds, New Understandings of Grief Taylor and Francis: Washington DC. Koff, C. (2004) The Bone Woman: Among the Dead in Rwanda, Bosnia, Croatia and Kosovo Atlantic Publishers: Southend-on-Sea. La Rochefoucauld, F. [1678] (1967) Maximes Editions Garnier Frères: Paris. Lawton, J. (2000) The Dying Process. Patients’ Experiences Of Palliative Care Routledge: London. Lee, R.M. (1993) Doing Research on Sensitive Topics Sage: London. Lock, M. (2002) Twice Dead. Organ Transplants and the Reinvention of Death University of California Press: Berkeley and Los Angeles. Mellor, P.A. and Shilling, C. (1993) ‘Modernity, self-identity and the sequestration of death’ Sociology 27(3):411-431. Okely, J. and Callaway, H. (1992) Anthropology and Autobiography Routledge: London. Parkes, C.M. (1972) Bereavement: Studies of Grief in Adult Life London: Tavistock. Prendergast, D.; Hockey, J. and Kellaher, L. (2006) ‘Blowing in the wind? Identity, materiality, and the destinations of human ashes’ Journal of the Royal Anthropological Institute (NS) 12(4):881-898. Rabinovitch, D. (2007) ‘Well, I’m finally a size eight …’ The Guardian 29th March.

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Jenny Hockey Rugg, J. (1999) ‘From reason to regulation: 1760-1850’ in P.C. Jupp and C. Gittings (eds) Death in England. An Illustrated History Manchester University Press: Manchester. Small, N. (2001) ‘Theories of grief: A critical review’ in J. Hockey, J. Katz and N. Small (eds) Grief, Mourning and Death Ritual Open University Press: Buckingham. Small, N. and Hockey, J. (2001) ‘Discourse into practice: The production of bereavement care’ in J. Hockey, J. Katz and N. Small (eds) Grief, Mourning and Death Ritual Open University Press: Buckingham. Stroebe, M.; Gergen, M.; Gergen, K. and Stroebe, W. (1996) ‘Broken hearts or broken bonds?’ in D. Klass, P.R. Silverman, and S.L.

Nickman (eds) Continuing Bonds, New Understandings of Grief Taylor and Francis: Washington DC. Sudnow, D. (1967) Passing On: The Social Organisation of Dying Prentice-Hall: Englewood Cliffs. Walter, T. (1994) The Revival of Death Routledge: London. Walter, T. (1996) ‘A new model of grief: Bereavement and biography’ Mortality 1(1):7-26. Walter, T. (1999) On Bereavement. The Culture of Grief Open University Press: Buckingham. Willmott, H. (2000) ‘Death. So what? Sociology, sequestration and emancipation’ The Sociological Review 48(4):649-665.

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book reviews TALKING WITH ANGEL ABOUT ILLNESS, DEATH AND SURVIVAL Evelyn Elsaesser-Valarino Edinburgh: Floris Books 2005, PB 205 pp, AUD 28.95 ISBN 0 86315 492 1

Dorothy Broom National Centre for Epidemiology and Population Health The Australian National University Australia

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his is the sort of book I feel I ought to like, and it is almost embarrassing to confess that I don’t. It comes enthusiastically recommended (on the back cover) by Allan Kellehear whom I admire greatly, and it revolves around the illness and dying of a young girl; so it seems almost irreverent to complain about it. On the surface, it belongs to the large and growing genre of ‘illness narratives’; in this case, told in the voice of a girl of indeterminate age who is diagnosed with an aggressive leukaemia and, at the end of the book, dies of it. The real focus, however, is her spiritual development as her illness worsens, and particularly as a result of a new death experience (NDE). Her growing insight is expressed in the form of night-time conversations with her favourite doll, the ‘Angel’ of the title. ElsaesserValarino has written two other (more academic) books about NDE: On the Other Side of Life, and Lessons from the Light. My difficulties with the book arise mainly from its language. Even though we are not told the age of the nameless protagonist, the words attributed to her are incongruous in what presents itself as a first person account from a child (she is young enough to be placed in a paediatric oncology ward in the hospital). For example, she describes her experience of treatment as one of ‘fathomless exhaustion mixed with crucifying boredom’, and quotes the doll as answering a question by saying ‘It is simply a matter of the activation of a natural Volume 16, Issue 5, December 2007

potential inherent in all humans.’ Such language is incongruous when ascribed to a child. In the latter half of the book, substantial segments of text quoting the doll take the form of short lectures. When a young fellow patient has a NDE, Angel explains: ‘He has come back with the memory of having contemplated the secrets of the universe from the beginning to the end of time, of having discovered the mystery of space and time, but having seen the perfect harmony of all things, and the bonds that unite all things … During James’s experience, absolute knowledge was revealed to him: the laws that govern the world and the universe with all their possibilities. In the revelation that gripped him, all truths found their precise and true place in relation to one another, interdependent and per manent movement and transformation.’

As a philosophical statement about what some people think can happen in a NDE, this may be fine. But putting it in the mouth of a child or a doll demolishes any willing suspension of disbelief. Because this kind of language dominates the text, I kept being distracted by the incongruity between the words and their supposed source, and soon gave up noting the particular instances because they were so numerous. (I was also irritated that the ‘being of light (pure consciousness)’ is referred to as ‘he’, but was prepared to ignore that linguistic offence.) Another annoyance within the text concerns the receiving of a letter from a fellow paediatric cancer patient, one supposed to have been written in only a couple of hours, yet it is nearly 6000 words long: a feat guaranteed to provoke the academic reader to incredulity, perhaps driven HEALTH SOCIOLOGY REVIEW

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by jealousy. The book contains a fair deal of dialogue, but little of it is convincing. Nevertheless, the book contains insights which may be of interest to some Health Sociology Review readers. For example, there are poignant observations about the way the narrator and her family members become separated from one another emotionally by their distress and grief, unable to talk frankly about the fear and guilt they are experiencing. Her own isolation is particularly acute. There are also occasional keen observations, such as a statement that the opposite of love is fear rather than hatred. Ultimately, the author considers the problems of life-threatening illness in philosophical terms, rather than addressing questions of pain or other symptoms, or social and bodily stigma. For readers interested in such an emphasis, or wishing to read

a short, fictionalised representation of the effects of NDE, Talking with Angel may be of use. Allan Kellehear – who ought to know – thinks the book could be ‘put into the hands of a child who is facing a life-threatening illness’, but I would want to take advice from someone with experience in the bedside care of such children before I offered it to a young friend. It may be helpful to service providers or family members, but they would have to be more forgiving of the book’s defects than I am. As suggested in the forward by Kenneth Ring (a psychologist of NDE), its main appeal may be to readers looking for the kind of self-development which can occur when people grapple emotionally and philosophically with the implications of their own embodiment and mortality.

*** BODIES AT RISK: AN ETHNOGRAPHY OF HEART DISEASE Elizabeth E Wheatley Aldershot, Hampshire, United Kingdom: Ashgate 2006, HB 135 pp, GBP 45.00, ISBN 0 7546 4307 7

Jeanne Daly Mother and Child Health Research La Trobe University Australia

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hen I was sent this book for review my first response was, ‘Oh, no, this is the book I want to write!’ That could have made me a prejudiced reviewer but, instead, it has given me an insight into the different ways in which a sociologist can study people recovering after a heart attack. In my own research, I was very much constrained by ethics regulation and allowed only limited access to clinical settings. Elizabeth Wheatley either experienced no such problem or was able to negotiate the difficulties better than I. Perhaps the United States is more respectful of the long sociological tradition of research by participant observation, a practice that is under threat in Australia. Here is what Wheatley did. Instead of focusing on recuperation immediately following a heart attack as most researchers do, she used a range

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of strategies to gain a longer term view of the experience in a number of settings. In what we might call the cardiac ward of a hospital, Wheatley worked as a volunteer once a week, visiting patients, running errands for the nurses, making beds, setting up educational videos and so forth. She describes this experience as giving her a snapshot view of an acute illness experience. Wheatley’s understanding of how people cope over time was gained from eighteen months working as an intern at two cardiac rehabilitation clinics. Here she developed an ongoing relationship with people learning to live with this chronic disease. Her participant observation was complemented by one-on-one interviews with patients in hospital or at home, including some follow-up interviews, and a series of focus groups which evolved into ongoing cardiac support groups. Wheatley describes, in disturbing detail, how patients are stigmatised after having a heart attack, with questions asked about the risky behaviour which could have caused it. Her overall Volume 16, Issue 5, December 2007

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aim, however, was to collect people’s stories of how they managed their bodies after these bodies had been stamped with the knowledge that they now had a disease which increased their risk of dying prematurely. People have to navigate a ‘long and winding road’ in order to live with changed physical capacities, social identities and relationships. Here she draws on Anthony Giddens’ analysis of risk and the risk culture. A heart attack is a life-threatening event, a ‘fateful moment’, which forces people to confront their mortality head on. But there is also the need to confront the various, sometimes conflicting assessments of risk from hospitals, clinics, and a range of health professionals as well as the lifestyle industry. In managing their ongoing lives, people need to reskill. In a very useful chapter two, Wheatley outlines the literature on how illness disrupts body, personal biographies, social identities and routines, with the need for interpretive effort to make the new state familiar. A central concept for Wheatley is reskilling, which she defines as ‘a process of re-learning physical and emotional features of embodiment in the wake of disruptions elicited by acute symptoms’ (2006:11). Reskilling is ongoing and protracted but episodic to cope with signs of the disease as they arise in the now ‘suspicious body’. This excellent chapter draws on the focus group discussions, including some spirited exchanges as participants discuss their experiences and interpretation of heart disease. She gives a clear analysis, moving smoothly from individual account to group experience. It would provide a useful reference for lectures on the use of focus groups in health research. Subsequent chapters follow a similar format, with analysis of the data supported by the relevant literature. Of particular interest to health researchers is persuasive argument that lifestyle choices are not merely an issue of personal commitment, but require ongoing negotiation. Wheatley shows that compromise and contestation are required to accommodate power relationships in the wake of the acquired stigma of heart disease. This is particularly relevant to the sometimes antagonistic negotiations about smoking and diet. Thus social contexts constrain

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or enable what health professionals see as necessary and individual changes to lifestyle. In chapter four Wheatley gives a very useful account of the medicalisation of fitness in cardiac rehabilitation. The arguments mounted in this chapter are fully relevant to the health promotion emphasis on risk and lifestyle. The people she interviewed are, of course, vulnerable, as they suffer from a declared risk in addition to the risks that beset the rest of us. Wheatley shows how medically-identified risk promotes notions of fitness, creating market opportunities for preventive and rehabilitative industries. There is a startling account of the way ‘rehabilitation technicians’ monitor bodies and slant understanding through what she calls ‘truth tricks’: such as applying population-based data to the individual case in a risk profile. A footnote records Wheatley’s discomfort when attending these sessions as an intern, and her lack of success at having social class introduced as a risk. Wheatley’s account does not fall into the trap of portraying the response to the overwhelming nature of a heart attack as being more or less the same for everyone. Here she draws on Foucault’s technologies of the self to classify the various ways in which people go about the task of reskilling after a heart attack. Her ideal types of reskilling are not fixed or exclusive and are presented as a range of ethics that people draw on to make sense of their decisions. Here Wheatley draws on the full study to demonstrate what is involved in taking on an ethical stance that emphasises exactitude, resignation, playfulness, evasion, dispute, or experimentation. These represent the various ways people deal with the technologies of dominance they encounter in clinical and social settings. Wheatley is no medical sceptic: she acknowledges the gain from medical and other health services. Her concern is with how notions of risk invade and distort recovery after a heart attack. As a result, this book is not just about heart disease but provides a great resource for researchers and teachers who analyse the social and other determinants of health. Perhaps it should also be compulsory reading for all hospital ethics committees.

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XENOTRANSPLANTATION: LAW AND ETHICS Sheila McLean and Laura Williamson Hampshire, England: Ashgate 2005, HB 290 pp, USD 94.95/ GBP 55.00 ISBN 0-7546-2379-3

Craig Fry Department of Health Science Monash University, Peninsula Campus Australia

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cLean and Williamson’s ‘Xenotransplantation: Law and Ethics’ is an impressive piece of scholarship on a complex issue in public health. Xenotransplantation is the animal-to-human transplantation of cells, tissues or organs for potential therapeutic benefits. It has developed in the context of the ongoing shortage in human organs and tissues available for transplantation. The authors present nine chapters traversing much ground. Conclusion and summary sections in each chapter help to tie the main themes together and increase the utility of this work for students and established academics and practitioners alike. There are some formatting characteristics that make the book difficult to use as a quick reference. One of these is the lack of a stand-alone reference section. Instead, cited sources are listed as footnotes throughout the text. Chapter one provides an overview of the current state of human organ transplantation: Why is society considering xenotransplantation? Live and cadaveric organ donation is discussed, along with procurement alternatives such as presumed consent, elective ventilation, a regulated human tissue market, artificial organs/ tissue, stem cell research, and mandated donation. Evidence is presented to suggest that even with a number of successful strategies in place, the supply would still fail to meet potential demand. I learned several things about organ donation, which made me wonder whether wider public education strategies might raise the number of registered donors. Xenotransplantation itself is introduced in chapter two. The primary objective of research

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in this area is therapeutic benefit: a key distinction ethically and for related evaluative questions. The authors highlight the divergence of definitions and the possible challenges this poses for international regulation since risks of infection is a global concern. The chapter gives a good historical overview, from the earliest accounts of sheep-to-human blood transfusions in 1628, to the later experimentation with primate kidneys, hearts, livers and the recent advances in cellular transplants. Clinical obstacles to success are also discussed (immunology, physiology, infectious disease risk). This chapter makes clear that xenotransplantation developed due to clinical urgency, but the authors do not ignore the wider socio-cultural questions. I suspect that many HSR readers would find much of interest in this work. Chapters three and four provide a detailed description of the xenotransplantation regulatory environment in the United Kingdom. I admit to finding these (and the later chapters on legal issues) less interesting, however I was impressed by the way key reports were reviewed and critiqued. The authors acknowledge that in addition to the need for public debate about the ethics of xenotransplantation, there is at present still a range of scientific, psychological, practical and public health issues requiring further attention. Chapter five reviews the national and international responses to xenotransplantation. Again, the work here is broad (but each section helpfully summarised), including international and European initiatives by WHO, OECD, the European Commission, the Council of Europe, and a review of the Australian response to xenotransplantation. The authors also describe clinical trials underway in the USA, Netherlands and Spain. The ethical dimensions of xenotransplantation are discussed in chapter six. It focuses primarily on issues to do with the use and treatment of animals, and the possible impact (covering costs and benefits) of xenotransplantation on Volume 16, Issue 5, December 2007

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individuals and society. I would recommend this chapter to students interested in public health ethics generally. It gives a clear account of the role and nature of ethics, individual and social dimensions and (importantly) the relationship between empirical and ethical approaches. Chapters seven and eight are devoted to outlining the legal issues associated with xenotransplantation, including a comprehensive account of predictable topics such as consent (medical, research), monitoring and surveillance, confidentiality, resource issues, human rights and international law, and legal liability. The final chapter considers the future for xenotransplantation. The authors warn that the ethical implications of scientific work in some jurisdictions are not being assessed thoroughly. They summarise the legal problems needing attention, including liability of industry and consent to xenotransplantation. The conclusion that McLean and Williamson arrive at is that ‘a public health ethic would support a moratorium on xenotransplantation clinical trials until more information is available on the procedure’ (2005:262). McLean and Williamson focus more on the legal regulatory than ethical issues surrounding xenotransplantation, perhaps because of the failure of applied ethics to deliver practical resources to guide decision-making in public health. This situation is changing with an increased focus on public health ethics over the last two decades. In public health we are seeing this space increasingly occupied by legal scholars. This book is a fine example of the intersection of law and ethics in public health. The authors help to demonstrate what an applied public health ethics approach can look like in an increasingly evidencebased and regulated public health arena. They see the link between the empirical and ethical clearly: ‘To determine the ethical standing of different aspects of animal to human transplantation it is imperative that ethical work is based on the most up to date empirical information. This necessitates that the ethical analysis of xenotransplantation is a dynamic exercise’ (2005:261). Of special note to Australian readers will be the overview of the deliberations of the NHMRC Xenotransplantation Working Party. In 2004 the

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NHMRC recommended a five year moratorium on organ animal-to-human transplantation trials. Readers may also like to look at other available Australian sources (Carter 2002; Public Health Association of Australia 2004) to give this work greater local context. While Australia has amongst the highest transplantation success rates internationally, our organ donation rate currently falls below the internationally accepted benchmark of 15–20 donors per million population (Mathew and Chapman 2006; Opdam and Silvester 2006). This book makes clear that several relevant human and system issues are poorly understood at present and require further investigation. These include public understanding, risks, barriers and incentives to human organ donation, and recipient identity issues. McLean and Williamson’s suggestion that ‘the potential of stem cell research may in fact overtake xenotransplantation as a treatment of choice for the future’ (2005:269), may prove prophetic considering recent developments in Australia. But other options to address the therapeutic shortfall due to low rates of organ donation in this country should also be explored (e.g. presumed consent, regulated human tissue market, artificial organs/ tissue, mandated donation). Xenotransplantation: Law and Ethics should be compulsory reading for anyone with an interest in organ transplantation and related issues.

References Carter, L. (2002) The Ethics of Xenotransplantation Fact Sheet 7, Office of Public Policy and Ethics, University of Queensland. Available at: http://www.uq.edu.au/oppe/PDFS/Xeno transplantation.pdf Mathew, T.H. and Chapman, J.R. (2006) ‘Organ donation: A chance for Australia to do better’ Medical Journal of Australia 185(5):245-246. Opdam, H.I. and Silvester, W. (2006) ‘Potential for organ donation in Victoria: An audit of hospital deaths’ Medical Journal of Australia 185(5):250-254. Public Health Association of Australia (2004) Xenotransplantation PHAA Policy Statement, PHAA: Deakin, ACT. Available at: http:// www.phaa.net.au/policy/policy statements/ Section%2020/Xenotransplantation.pdf

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ORDER FORM Death, Dying and Loss in the 21st Century Edited by Allan Kellehear Social & Policy Sciences, University of Bath, United Kingdom ISBN 978-0-9757422-9-7 ii + 86 pages; softcover A special issue of Health Sociology Review: Policy, Promotion, Equity and Practice (Volume 16, Issue 5, December 2007) Institutions: US$99.00/AU$99.00; Individuals: US$55.00/AU$55.00. Postage and handling costs are not included; prices include GST for Australian customers. Student and TASA Member discount: 20% off the individual price. Evaluation copies are available for appropriate course coordinators. Number of copies: ___________ Total: US$ ___________ Total: AU$ ___________ A cheque made payable to eContent Management Pty Ltd is enclosed We have remitted this amount to your bank BSB: 803-140 Account: 14073170 today with the reference ____________________ Please issue a proforma Tax Invoice against Purchase Order No. ____________ OR Please charge this purchase to my Mastercard/Visa* credit card below *a 4% credit card merchant fee will be added to credit card purchases to cover bank fees.

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HEALTH SOCIOLOGY REVIEW

Volume 16, Issue 5, December 2007