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In 1997, sociologist Lesley Fitzpatrick conducted a little-known study of images of death in Australian painting.¹ In a survey of 100 published non-Indigenous artworks she found an abundance of images of death and loss but hardly any images of dying. In both colonial and modern images of the "good death", Australian painting frequently depicted dead bodies, but interactive pictures of deathbed scenes or farewells to the dying, so commonly observed in European artworks, were nowhere to be seen. It is as if Australian culture, through its artworks, readily acknowledged death and grief, but not the process of dying. No special prescriptions or behaviours are portrayed for bridging the transition between active life and death. Is it any wonder that when Australians now face the prospect of dying they are empty of ideas about what is to be done? Is it any wonder that palliative care services are less well known than the so-called "euthanasia debate" — a debate, among other things, about whether Australians should undergo the social experience of dying at all?

The absence of a national story about dying

The early Australian colonies were set up during a time of rapid secularisation in Britain and Europe, a time when all major Western nations were renegotiating their relationship with organised religion. Previously, religious ideas and rituals governed everything from the economic cycles of the farm to government and home life. The Industrial Revolution changed this relationship forever: the influence of religion was gradually eroded by the rise of an educated, literate middle class; massive urban and international migration; increasing social and political criticism of religion; new scientific ideas about the body, the universe and the role of government institutions; and the desire of governments to plan new cities, industries and colonies.

In the close-up world of families, partners were chosen from among strangers in the city rather than from childhood acquaintances in the home village. And deaths, like births, became increasingly the province of medicine and law rather than the clergy. The traditional need to look after the welfare of one's soul transformed itself in the 19th century into a need to look after the welfare of others, especially close family members. The last will and testament began to replace the last rites and prayers for the dying.

The first 100 years of European settlement in Australia coincided with this time of transition. Australians began to see their death as a failure of health and not a natural or divine outcome of life. Although many early Australians, particularly from the educated classes, clung to Anglo-Celtic or European Christian ideals of the good death at home,² an increasing number of less privileged Australians experienced their final days simply as "sick persons" who failed to recover. These modern ideas about death continued and evolved during the 20th century.³

Towards a national story about dying

Since the Second World War, three further influences have shaped Australian attitudes to dying: increased social mobility and material wealth; the ascendancy of and desire for professional services; and the personal values of choice, discernment, and privacy.³

But the post-war generation of socially mobile Australians was also being strongly influenced by US popular culture — from the Mickey Mouse Club to the Beach Boys to Elizabeth Kübler-Ross and the values of personal choice and "rights" in healthcare. This "Americanisation" helped create a receptive attitude to US ideas about a range of health and social issues, including those of death.

In the United Kingdom, after centuries of viewing dying as the responsibility of religious or charitable institutions, the 20th century saw the development of the first modern hospices that attracted widespread social and medical support. Public health ideas from North America and Europe and the UK hospice experiments attracted our attention as ways to address the gaps in our local storylines about health and dying.

From sick person to health consumer

Both the US public health movement and the UK idea of the hospice have their roots in a participatory philosophy of patient care. To understand how this philosophy came to underpin and complement today's view of patients as consumers, we need to briefly examine changes in the doctor-patient relationship since the Industrial Revolution.

In the 17th century, medicine was practised under a patronage system.⁴ Doctors were employed by wealthy patrons to attend to the needs of their family or the court. But theories of disease were tied to superstition, and medical systems of knowledge were primitive by today's standards. A physician's view of the body was not dissimilar to that of a weather-watcher. To make a diagnosis, the physician required that the patient tell a story of symptoms, as elaborately as possible. Examination was infrequent, and in any event often revealed little, since both signs and symptoms bore little relation to the physiological events of the illness as we currently understand them. Doctors of the time were entirely dependent on their patients for diagnosis and management of illness.

During the early 19th century, changes in government policy in Europe forced doctors to work in public institutions. This development increased experimentation and exploration of the body as a physical system, and populations as biological and ecological systems.⁵ Understanding of anatomy, biology and pathogenesis rapidly increased. These gains were further enhanced by laboratory work in pathophysiology, biochemistry and pharmacology.

By the turn of the 20th century, medicine had transformed itself into a profession that could diagnose without the full participation of the patient. By the 1950s, doctors were able to discover and interpret signs, send human tissue samples to laboratories, and consult a growing research-based literature to make a diagnosis. These developments meant that voluntary patient participation in providing information was merely desirable rather than essential to a medical diagnosis. Now, the doctor literally "knew best". The modern role of the patient became increasingly passive and compliant.

By the late 1960s, medicine was already recognising that, despite unprecedented advances in medical knowledge, few inroads had been made against the main diseases that plagued modern society — cardiovascular disease and cancer. The morbidity and mortality from these diseases were recognised to be largely preventable. However, to make a prevention strategy possible, there needed to be a degree of reversal of patient passivity about health. Patients now needed to take responsibility for their own health and illnesses. Diet, exercise, avoidance of harmful substances (eg, tobacco, alcohol, asbestos), safe design (eg, of buildings, cars) and safe work practices all became important to personal health.

This "New Public Health" became the subject of major government policies during the 1970s but it had one backward policy implication: it tended to blame the victim.⁶ This new moralism soon called forth a need for a more collaborative style of healthcare.

In 1986 the Ottawa Charter for Health Promotion was disseminated by the World Health Organization.^7,8 It recognised the social character of health and illness and encouraged a participatory style of healthcare — a partnership between people and their healthcare providers. Health was the responsibility of everyone, not just doctors or patients but also employers, schools and communities. Like workplace safety or social justice, people could reasonably expect assistance with achieving desirable healthcare outcomes. They needed to aim for desirable outcomes for themselves, but they also needed help to achieve them. These attitudes have become the basis of the current "health consumer" concept of death and dying in Australia.

New national stories about dying: palliative care and euthanasia

In recent years, national discussion about dying has focused on two distinct alternatives. Popular and government debate, and their coverage by the media, have made palliative care and euthanasia the main storyline choices for dying in Australian society. Both have at their core the philosophy of a participatory style of healthcare.

If Australians are to consciously acknowledge the experience of dying, they now expect to have assistance with this experience. Either they are to have palliative care services that "neither hasten nor postpone death", but relieve their physical and emotional distress, or, alternatively, they may end their physical distress and cease to be a burden on their carers and the community by requesting death from their doctor. Both choices have at their heart the current values of healthcare partnerships, the primacy of patient autonomy and decision-making, and the accommodation of diverse social ideas about "quality of life". The former choice is the object of growing government funding and policy development, while the latter is currently illegal.

Yet, because of bureaucratic definitions and funding criteria, palliative care services are quickly becoming clinical care (ie, care focused mainly on symptom control) at the end of life, particularly the last 3-6 months of life. Palliative care, originally a community-based and community-supported form of care,⁹ is now either another form of institutional care (the hospice) or hospital-in-the-home-type care. The original role and definitions of "community care" (embracing a more holistic view of patients and their social networks) are rarely defined or revisited in palliative care policy. Social concerns in palliative care still appear heavily institutionalised or clinical in language and values (eg, instead of working with local government and the media to give grieving people the chance to talk and be listened to, we offer "bereavement counselling services").

And, as if reacting to the threat of institutionalised care, proponents of euthanasia look to legal, medical and social support for their beliefs. Although the lack of guarantees about symptom control at the end of life could be used as a persuasive argument by the pro-euthanasia lobby, supporters of euthanasia are generally more concerned with the broader concept of "dying with dignity", a set of social ideas that go well beyond guarantees of pain control.

How satisfactory are the main contenders for a national vision of dying?

For the past 50 years, in industrialised countries around the world, the consequence of prevailing attitudes to dying has been the occurrence of most deaths in institutions such as nursing homes and hospitals. Part of that social experience has been the loneliness of dying, the subject of so much social and medical criticism during the 1960s and the major impetus for the twin social movements of hospice care and euthanasia.

In part, these movements have been a reaction to the fear and revulsion felt at the prospect of isolation and institutionalisation. In this spirit we have sought to revive the idea of "the home" as the ideal site for growing old or dying. Yet repeatedly we are confronted with the complex reality of disease and infirmity, and the all-too-common reality of poor financial resources, lack of social supports, or inadequate health service provision — everyday realities that conspire to keep people dying in institutional settings.

These problems continue to haunt us because we continue to view dying as a problem for clinical services rather than whole communities and because we seldom resist an opportunity to sentimentalise "the home". Revisiting ideas of prevention (of social, psychological and spiritual morbidity), early intervention or community partnerships is a serious prerequisite to opening out the debate and expanding our repertoire of choices beyond mere clinical and institutional horizons.¹⁰

We seldom challenge the prevailing view of dying as a physical problem, and thus fail to recognise that living with dying is also about changing personal identity and social needs. Until we view Australian dying in these broader, yet more intimate, terms, our local vision of dying will always seem somewhat clinical, technical and institutional. Discussion must move away from a debate about medical control at the end of life and towards inclusive ideas about end-of-life care that embrace a vision of dying drawn from diverse and broader social ideas about healthcare and its relevance to care of the dying.

Unless current attitudes change, the picture of an Australian way of dying will remain unpainted by those who make up Australian social and cultural identity. And the stories we tell ourselves about death will inevitably cast a shadow of apprehension — at the prospect of custodial care — across the face of every Australian who asks the question, "How will it be possible to die in the manner I have lived?".

References

1. Fitzpatrick L. Secular, savage and solitary: death in Australian painting. In: Charmaz K, Howarth G, Kellehear A, editors. The unknown country: death in Australia, Britain and the USA. Basingstoke, UK: Macmillan, 1997: 15-30.
2. Jalland P. Death in the Victorian family. Oxford, Oxford University Press, 1996.
3. Kellehear A. The Australian way of death: formative historical and social influences. In Kellehear A, editor. Death and dying in Australia. Melbourne, Oxford University Press, 2000: 1-13.
4. Jewson ND. The disappearance of the sick man from medical cosmology 1770-1870. Sociology 1976; 10(2): 225-244.
5. Waddington I. The role of the hospital in the development of modern medicine. Sociology 1973; 7(2): 211-224.
6. Baum F. The new public health: an Australian perspective. Melbourne, Oxford University Press, 1998.
7. World Health Organization. Ottawa charter for health promotion. Health promotion 1986; 1(4): i-v.
8. World Health Organization. The Jakarta Declaration on Leading Health Promotion into the 21st Century. Geneva, WHO, 1997.
9. Clark D. Cradle to the grave? Terminal care in the United Kingdom, 1948-67. Mortality 1999; 4(3): 225-247.
10. Kellehear A. Health promoting palliative care. Melbourne, Oxford University Press, 1999.

Authors' details 

Reprints will not be available from the author.
Correspondence: Professor Allan Kellehear, Palliative Care Unit, La Trobe University, 215 Franklin Street, Melbourne, VIC 3000.
a.kellehearATlatrobe.edu.au

©MJA 2001
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