Palliative care

Objective: To assess the effect of adding 1 mg dexamethasone to syringe drivers on the viability time of subcutaneous cannulation sites in palliative care patients.Design: Prospective, double-blind, randomised, controlled trial in which patients received half their daily infused medications plus 1 mg dexamethasone in 1 mL saline through one subcutaneous site (test site) and the other half of their medications plus 1 mL saline through another symmetrically placed site (control site).Participants and setting: Palliative care patients from the inpatient units at two hospices, recruited between 1999 and 2002.Main outcome measure: Difference in time that the test and control sites remained viable.Results: 38 patients consented and were randomised. Twenty did not complete the trial because their participation in the study finished before either site broke down. Eighteen patients either partially completed (at least one site broke down) or fully completed (both sites broke down) the trial. In these 18 patients, test sites lasted 3.6 days longer than control sites (95% CI, 1.5–5.8 days; P = 0.002). Twelve patients fully completed the trial. In this group, test sites lasted 3.9 days longer than control sites (95% CI, 0.6–7.2 days; P = 0.025).Conclusions: The addition of 1 mg dexamethasone to syringe drivers significantly extends the viability time of subcutaneous cannulation sites in palliative care patients.

Liz Reymond FRACGP, PhD · Pat Treston MPHC(Palliat Care), FAChPM · Margaret A Charles PhD, MAPS · Jan Bowman MPHC(Palliat Care), FAChPM

The care of a dying person requires qualities of a medical practitioner that do not sit neatly within the prevailing medical paradigm. "Don't just do something, sit there!" This twist on a well known adage was coined by the American social psychologist Richard Kalish,1 and at the time was directed to those whose task it was to care for the sick and dying. It is a novel, but pointed, statement that stresses the importance of being really present for people who are suffering, and truly hearing their pain. The statement may not have been made with the medical profession specifically in mind, but it is nonetheless as pertinent to doctors as it is to anyone involved in caring for the sick. For doctors, the challenge implicit in the statement is that patients, particularly those with a life-threatening illness, may not be well served by a model of care that concentrates on diagnostic and therapeutic interventions.2 Indeed, the threat of death creates needs that can never be met by attending to the physical domain alone. Pain relief and meticulous attention to troublesome symptoms certainly go a long way towards restoring comfort and dignity, but emotional and existential issues need to be approached in a more holistic way — one in which honesty, empathy, authenticity and the ability to communicate feature high on the list of qualities required of the doctor. "The physician is only the servant of nature, not her master" –Paracelsus (1493 – 1541) The emphasis in medicine over the past 50 years or more has been on cure, or at least on what can be done technically and pharmacologically. With the increasing number of tests and treatments now available, the tendency to intervene has reached a point where it is hard to imagine how we, as practitioners, could function in anything other than this model — a model described by Moskowitz as a "medical juggernaut driven by a logic of its own, one less focused on human suffering and dignity than on the struggle to maintain vital functions".3 As a young physician in the early 1970s, I vividly remember an elderly general practitioner reflecting on his 60 years in practice. It was both fascinating and enlightening to hear someone talk about the care of patients at a time when there were no antibiotics or specific treatment for chronic illnesses such as asthma, diabetes mellitus and hypertension. It was a time when morphine, mercurial diuretics, digitalis leaf, tourniquets and venesection were the only interventions available for heart failure, and treatment for most conditions was guided by clinical judgement rather than "numbers" and x-rays. By present-day standards, this doctor had little in the way of a medical armamentarium. But, although he may have been helpless to influence the course of many illnesses, he did not consider himself to be helpless. He comforted the sick, sat with them and their families during difficult times, and was a trusted and reassuring presence in the face of death. He may have had little to offer medically, but what struck me was that I, with my newly acquired specialist ticket and accompanying bag of tricks, felt more uncomfortable and helpless than he when faced with a dying patient. Times have changed, and many of the illnesses that claimed lives in the early part of the 20th century are now preventable, curable or more easily palliated. For many patients we have succeeded in postponing death and have hopefully improved the quality of their life. But have we improved the care of those who cannot be cured? Are we as skilled as my GP colleague in comforting and communicating with the sick and dying, or are we distracted by unnecessary tests and futile treatments that threaten to engage us in a form of subterfuge that serves only to conceal a sense of helplessness, while adding considerably to a patient's distress? In a retrospective study of 100 deaths at an Australian hospital, Middlewood et al4 noted that 74 of the patients were considered by the attending medical team to be dying, and "do not resuscitate" (DNR) orders were completed for 88 patients. Despite this, 78 were subjected to one or more tests after the DNR order, 67 received antibiotics, and 88 were given intravenous fluids. At the time of death, 27 of the patients were still receiving antibiotics and 49 had a drip in situ. Although most of the patients were thought to be dying, the approach to care did not appear to reflect this, or if so, only very late in the course of the illness. Similar outcomes were found in a study of 200 deaths within a large medical centre in the United States.5 In this study, comfort-care (palliative-care) plans were completed in just 46% of the patients and, once again, this occurred late in the admission, even though most patients had been identified as dying and DNR orders were completed well beforehand. In a report entitled Pursuing a peaceful death, Callahan6 intimated that the medicalisation of death has made the prospects of "dying well" more of a hope than an expectation. "Death", he says, "is now harder to predict, more difficult to manage, the source of more and more moral dilemmas and nasty choices, and spiritually more productive of anguish, ambivalence and uncertainty". Callahan is not making excuses for clinicians, nor is he suggesting a return to the days when death was more predictable simply because there was little that could be done to prevent it. Rather, he implores that we, individually and collectively, look at the way we care for the dying and reflect on whether our actions contribute to patients not dying well. He urges us to see death not as a failure of medical treatment but as one of the most important times in a person's life — a time that calls for respect rather than interference. It is a time when attention to suffering is more important than the maintenance of physiological function. We physicians can help patients die with comfort and dignity by withholding or withdrawing treatment that is clearly futile. Such a decision is never easy, and circumstances pertinent to each patient can make this more difficult. Our honesty, authenticity, and the way we impart information can effectively bridge such difficulties and allow the patient, his or her family, and the attending team to refocus on the broader issues. To inform a patient that he or she is dying is painful and traumatic, but it is not made any easier by deferring or avoiding the subject altogether. Our honesty only confirms what most dying people already suspect. If we ignore the truth, we deceive ourselves as well as our patients and deprive them and their families of the opportunity to say goodbye and prepare for death.7 Grahame Jones, writing about an illness that ultimately claimed his life, said, "let the healthy talk of illness; let the sick talk of more important things".8 Care modelled around tests and futile attempts at cure only succeeds in maintaining a focus on illness. This may be comforting to the clinician, but it effectively robs the dying patient of the opportunity to talk about the "more important things". In the many public talks that she has given in the past, Elisabeth Kubler-Ross, author of On death and dying,9 often spoke about a member of the hospital staff whom dying patients would invariably seek out when they needed comfort or someone to talk to. This person was not a doctor, nurse, social worker or counsellor. She was the cleaner, and, when asked by Kubler-Ross why she was so sought after, her reply was simple but direct. "Death", she said, "is an old friend". This woman had seen a lot of death, not just in the hospital but also within her own family, and, like the elderly GP who had so impressed me, was not afraid to journey with people as they were dying. Neither she nor the GP relished the task, but neither sought to abandon their responsibility during the difficult and sometimes frightening time leading up to death. Both are excellent role models and demonstrate the important role we can play in helping patients prepare for death. If we are able to do this, we not only play an important part in their healing but also heal a part of us that may be uncomfortable with death.

Michael Barbato MB BS, FRACP

To the Editor: The study by Douglas et al1 reports that the purposeful hastening of death in terminal illness is both widely practised and an acceptable method of palliative care for over a third of Australian surgeons. Yet the study is based on a questionnaire strongly favouring theoretical scenarios rather than actual practice. The framing of the questions maximises reporting bias towards "hastening death" by the use of absolute terms (eg, "Have you ever . . .?"; "[Are] there any circumstances . . .?"1). The study also fails to determine the stage in a terminal illness at which hastening of death had been, or might possibly be, acceptable to the surgeons, nor the reason for its implementation. If the patient's symptoms are already adequately controlled and the dying process is not prolonged, we do not see why it is necessary to administer doses in excess of those required to control symptoms. Whose symptoms are we treating?

Mathew Piercy · Gerald B Fogarty · Aubrey W Jansz · David M Gawler · Luis Vitetta · David Kenner · Avni Sali

To the Editor: We wish to comment on the article by Douglas et al about surgeons hastening death.1 Recently, Ray2 noted that, historically, surgeons have had to witness their patients' pain probably longer than any other medical specialty. Hence, it is not surprising to read Douglas and colleagues' report1 that more than a third of surgeons surveyed performed life-terminating events without explicit and persistent requests. The desire for death, as perceived by doctors and patients, has been correlated with ratings of pain, depression and poor family support.3,4 Surgeons, while intending "no harm", could be seen to be palliating themselves (relieving their own distress) as well as their patients' when performing life-terminating events. Helplessness, hopelessness and negative attitudes toward life-sustaining treatments are common and understandable in palliative care, and experienced by both doctors and patients.3,4 Surgeons are relatively new to palliative care and could have a significant contribution to make to the psychosocial support of cancer patients with terminal illness. Decisions by surgeons about hastening death may be modified by greater interaction with their patients' families and with other healthcare providers working with terminally ill patients. A clinical-outcomes study of 102 consecutive deaths of terminally ill patients admitted to hospice care during 1997–1999 highlights the importance of family support in the outcomes immediately before death.5 The study period coincided with a time of heightened awareness of euthanasia in Australia. Fifty-six per cent of the patients had received continuous family support and 44% sporadic support; these patients appeared to have less distress and better preterminal outcomes, despite 10% experiencing significant family conflict and distress. However, no spontaneous or other requests for euthanasia were recorded in patient files or notes by staff. This could reflect, in part, family support received in an environment conducive to positive interactions between patients, their families and health professionals. Involving such palliative care teams in surgeons' care for terminally ill patients may have a significant effect on both pre-terminal outcomes and hence requests for euthanasia.

Mathew Piercy MB BS · Gerald B Fogarty BSc, MB BS(Hons) · Aubrey W Jansz MB BS, FRACS · David M Gawler MB BS, FRACS, FRCS · Luis Vitetta · Avni Sali Professor and · David Kenner

When a dying patient lacks decision-making capacity, the general practitioner needs to collaborate with family members in making decisions about forgoing life-sustaining treatment. The key to working out the best course of action is for the doctor to have a very clear idea of which treatment options he or she considers acceptable or unacceptable. The choice of treatment depends on a thorough evaluation of all the clinical information and careful reflection, bearing in mind that medicine has its own proper limits. Life-sustaining treatment may legitimately be forgone if it is (a) therapeutically futile, (b) overly burdensome to the patient, (c) not reasonably available without disproportionate hardship to the patient's carers or others, or (d) refused by the patient.

Paul A Glare FRACP, MAApplEth(Healthcare) · Bernadette Tobin MA, PhD

The past five years in palliative medicine have involved a period of review and rapid progress in research and service provision. The development of sound evidence to refine longstanding practice is the hallmark of research programs. Pain management. In pain, useful laboratory models now support observations that have been difficult to confirm. Significant nervous system changes in receptors/neurotransmitters and in anatomy are now known to occur in response to uncontrolled pain. Studies of the complex interactions of opioid receptors, N-methyl-d-aspartate receptors, and substance P and its receptors are broadening our knowledge of what happens in chronic pain. In animal models, there is evidence of nerve growth in response to chronic pain. These results indicate a need to control pain aggressively before irreversible changes in the central nervous system occur. The time scale for such changes in humans is still not clear. Morphine receptors multiply in response to uncontrolled pain. Their migration to the perisynaptic region of the nerve is necessary for them to modulate pain transmission, and is impaired in states of direct nerve damage. The concept that chronic pain is disease of the CNS, not simply nerves firing because of noxious stimuli, is important and clinically relevant.1 Palliative medicine has been dominated by the concept of new ways of using old medications. Research and validation of medications for use subcutaneously and in the syringe driver has been of medicolegal significance, as many common practices were outside recommended administration guidelines. The common combinations of medications in syringe-driver infusions had been based on anecdotal observations; recent research has validated some combinations, and provided some surprises for clinicians.2 The development of long-acting preparations of common opioids has revolutionised clinical care. New delivery systems for opioids have led to slow-release (8–12 hours) and sustained-release (12–24 hours) oral morphine preparations. Transdermal delivery of fentanyl every three days is now widespread. The plethora of opioid preparations and formulations has assisted in individualising treatment of pain for patients with life-limiting illnesses. The ease of use of new formulations has assisted the trend from inpatient to community-based care, with benefits to patients and their carers. Service provision. Palliative service provision has received closer evaluation, and overview data are now available to demonstrate the benefits of coordinated interdisciplinary palliative care. Important issues in service delivery include better coordination of services (rather than simply adding new services), greater access to out-of-hours support, and the specialised knowledge of someone who can advise because they do it all day, every day. Improved patient outcomes include increased time at home, fewer inpatient bed-days, better patient and carer satisfaction, and a greater likelihood of people dying where they want to.3 The complexity of supporting patients with widely differing diagnoses on a journey with a common end remains the challenge in palliative care. There is a growing emphasis on non-malignant diseases —end-stage organ failure, AIDS and neurodegenerative diseases. The focus of what is important to patients, recently bereaved families, physicians and other healthcare professionals is being researched. Issues that come to the fore include symptom management, achieving a sense of completion, decisions about treatment preferences, and treatment of the "whole person". For patients, other strong themes include being mentally aware, having funeral arrangements in place, not being a burden, helping others, and coming to peace with God.4 Research. Studying palliative-care populations poses ethical dilemmas, but such studies do improve care. One study of signal-averaged EEGs for patients who have entered unconsciousness at the end of life5 showed the response of unconscious patients to stimuli such as familiar voices, the lightening of consciousness just before death in most patients, and the importance of continued use of analgesics in people with a history of pain. In patients sedated with benzodiazepines, the level of unconsciousness was no deeper than in patients not sedated. As far as direct therapeutic advances are concerned, there have been few advances for the most common symptom, fatigue. Study is also required into cachexia syndromes and restlessness associated with the terminal state. These are areas where a great deal of work is needed if we are to make a sustained difference to people whose bodies are closing down. Future advances in the mechanisms and management of pain will include preparations and formulations designed to assist with the palliative-care principle of individualisation of symptom control. There is much research on the horizon for better clinical outcomes for palliative patients.

Deborah A Campbell MB BS, FAChPM · David C Currow BMed, FRACP, FAChPM

Death and the Physician Intention, the law, and clinical decision-making in terminal care The duty of doctors is to strive to satisfy the wishes and interests of their patients and their patients' loved ones MJA 2001; 175: 516 The criminal law governing medical decision-making about the end of life is based on the doctor's intention. If the intention of treatment is to hasten or bring about the patient's death, whether by withdrawal of life-prolonging treatment, by administration of terminal sedation or a lethal bolus injection, the doctor could be prosecuted for murder. The survey of attitudes and practices of general surgeons in Australia by Douglas and colleagues in this issue of the Journal highlights some of the problems with using "intention" as the key factor for determining the moral and legal status of medical acts. Of the survey respondents, 36% indicated that, for the purpose of relieving a patient's suffering, they had given drugs "in doses greater than those required to relieve symptoms, with the intention of hastening death".1 This type of intervention has been referred to as "slow euthanasia".2,3 Theoretically, if the existing criminal code could be unswervingly applied, the survey findings suggest that many general surgeons in Australia could be prosecuted for murder, and possibly imprisoned, because of their care of terminally ill patients! In South Australia, the Consent to Medical Treatment and Palliative Care Act 1995 states: A medical practitioner responsible for the treatment or care of a patient in the terminal stage of a terminal illness . . . incurs no civil or criminal liability by administering medical treatment with the intention of relieving pain or distress . . . even though an incidental effect of the treatment is to hasten the death of the patient.4 The Act acknowledges the special context of a therapeutic clinical relationship, and affords some protection to clinicians who palliate terminal suffering. But the SA Act does not encourage openness and honesty in reporting responses to patients' requests for a hastened death, nor does it protect doctors who intentionally hasten death to relieve suffering. Under existing criminal law in SA and elsewhere, doctors could be prosecuted because of the way they express their intent about a treatment which hastens death, while other doctors who administer the same kind of treatment, but express their intent as "palliative only", could remain free to practise. If they were brought before the criminal courts, many of the general surgeons who participated in the survey by Douglas et al, and indicated they administered medication with the intention of hastening death, would probably give different answers about their care, perhaps with less forthright honesty. Can a hastened death be truly described as "unintended" and "incidental" if clinical reasoning makes it foreseen, it is discussed with the patient and carers, agreed to, and then deliberately proceeded with? Intention is inherently subjective; it can be complex, ambiguous, and paradoxical.5 The clinician's intention may also be difficult to infer, for example when the method of hastening death involves a separation (in time) between the initiation of an infusion of drugs and the patient's death. Moreover, the progression of disease can confound any causal link between administration of the drugs and the patient's death. On the other hand, a lethal injection reveals a clear intention to end the patient's life and it is therefore more amenable to being policed. According to the survey by Douglas et al, 54% of respondents thought that there were circumstances in which it might be morally acceptable to give large doses of drugs with the intention of hastening death, although the proportion agreeing with this varied widely according to religious affiliation — from 31% for Roman Catholics to 70% for those of no religion.1 Some religious organisations have vigorously opposed medical euthanasia, but, for many people, the values of compassion, mercy for those who are suffering and the "do unto others" principle are sometimes compatible with euthanasia. The survey findings highlight an obvious discrepancy between the existing legal framework and what a majority of general surgeons in Australia see as morally acceptable terminal care. In the context of suffering with advanced disease, a rational patient may genuinely want a hastened death and this may not be regarded as "bad" (as assumed by traditional laws about murder). Those closest to a terminally ill patient will frequently regard his or her eventual death as a "merciful release" and "a blessing". The duty of doctors is to strive to satisfy the wishes and interests of their patients and their patients' loved ones, and this duty can conflict with the crude criminal code. This conflict serves neither medicine nor respect for the law. Intention in relation to the time of death, by itself, is an inadequate moral and legal basis for medical decisions in terminal care. Quill observed that "our current ethical thinking and legal prohibitions reinforce self-deception, secrecy, isolation, and abandonment at a time when the exact opposite is needed".5 I question medical organisations' support for the existing law that puts many doctors at risk of most serious charges. If a doctor can demonstrate competent care that is in accordance with the patient's wishes and interests there should be immunity from prosecution. The survey by Douglas et al adds weight to arguments for a refinement of the criminal code or a reform of statute law. It also points to the need for further research to better understand the ethical paradigms used by doctors in terminal care. Roger W Hunt Senior Consultant and Lecturer in Palliative Care Flinders University, Adelaide, SA Douglas CD, Kerridge IH, Rainbird KJ, et al. The intention to hasten death: a survey of attitudes and practices of surgeons in Australia. Med J Aust 2001; 175: 511-515. Hunt RW. Palliative care — the rhetoric-reality gap. In: Kuhse H, editor. Willing to listen — wanting to die. Melbourne: Penguin, 1994. Billings JA, Block SD. Slow euthanasia. J Palliat Care 1996; 12: 21-30. Consent to Medical Treatment and Palliative Care Act, 1995. <www.pallcare.asn.au/jcpall.htm> (accessed October 2001). Quill TE. The ambiguity of clinical intentions. N Engl J Med 1993; 329: 1039-1040. Make a comment

Roger W Hunt

Death and Society The changing face of dying in Australia Australians have traditionally shied away from defining and expressing ideas about dying. Our perceptions of dying are derivative of English and North American attitudes. Debate continues on the subject of palliative care versus euthanasia: the increasing tendency to see palliative care as clinical care at the end of life reassures some, but perturbs others whose main concern is "dying with dignity". Perspectives on dying will be inadequate as long as they remain technical, clinical and institutional. Allan Kellehear MJA 2001; 175: 508-510 The absence of a national story about dying - Towards a national story about dying - From sick person to health consumer - New national stories about dying: palliative care and euthanasia - How satisfactory are the main contenders for a national vision of dying? - References - Authors' details - - More articles on Palliative care 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 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. Jalland P. Death in the Victorian family. Oxford, Oxford University Press, 1996. 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. Jewson ND. The disappearance of the sick man from medical cosmology 1770-1870. Sociology 1976; 10(2): 225-244. Waddington I. The role of the hospital in the development of modern medicine. Sociology 1973; 7(2): 211-224. Baum F. The new public health: an Australian perspective. Melbourne, Oxford University Press, 1998. World Health Organization. Ottawa charter for health promotion. Health promotion 1986; 1(4): i-v. World Health Organization. The Jakarta Declaration on Leading Health Promotion into the 21st Century. Geneva, WHO, 1997. Clark D. Cradle to the grave? Terminal care in the United Kingdom, 1948-67. Mortality 1999; 4(3): 225-247. Kellehear A. Health promoting palliative care. Melbourne, Oxford University Press, 1999. Authors' details Palliative Care Unit, La Trobe University, Melbourne, VIC. Allan Kellehear, PhD, Professor of Palliative Care, and Director. 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 Make a comment

Allan Kellehear

Death and the Physician The intention to hasten death: a survey of attitudes and practices of surgeons in Australia Charles D Douglas, Ian H Kerridge, Katherine J Rainbird, John R McPhee, Lynne Hancock and Allan D Spigelman MJA 2001; 175: 511-515 For commentaries, see Hunt and Ashby See also: Survey instrument Abstract - Methods - Results - Discussion - Acknowledgements - Competing Interests - References - Authors' details - - - More articles on Ethics Abstract Objective: To determine attitudes among surgeons in Australia to assisted death, and the proportion of surgeons who have intentionally hastened death with or without an explicit request. Design: Anonymous, cross-sectional, mail-out survey between August and November 1999. Participants: 683 out of 992 eligible general surgeons (68.9% response rate). Main outcome measures: Proportion of respondents answering affirmatively to questions about administering excessive doses of medication with an intention to hasten death. Results: 247 respondents (36.2%; 95% CI, 32.6%-39.9%) reported that, for the purpose of relieving a patient's suffering, they have given drugs in doses that they perceived to be greater than those required to relieve symptoms with the intention of hastening death. More than half of these (139 respondents; 20.4% of all respondents; 95% CI, 17.4%-23.6%) reported that they had never received an unambiguous request for a lethal dose of medication. Of all respondents, only 36 (5.3%; 95% CI, 2.9%-6.1%) reported that they had given a bolus lethal injection, or had provided the means to commit suicide, in response to an unambiguous request. Conclusions: More than a third of surgeons surveyed reported giving drugs with an intention to hasten death, often in the absence of an explicit request. However, in many instances, this may involve the use of an infusion of analgesics or sedatives, and such actions may be difficult to distinguish from accepted palliative care, except on the basis of the doctor's self-reported intention. Legal and moral distinctions based solely on a doctor's intention are problematic. The use of drugs to intentionally hasten the death of a terminally ill patient is prohibited in most countries, including Australia. The only country that has openly allowed medically assisted deaths is the Netherlands, where 3.4% of all deaths are reported as (intentional) medically assisted deaths.1 Most of these are voluntary euthanasia or assisted suicide, but about a quarter are "life-terminating acts without explicit and persistent request".2 The most recent survey indicates that 53% of Dutch doctors have practised euthanasia or assisted suicide and 23% report that they have performed "life-terminating acts without explicit and persistent request".1 Medically assisted deaths also occur in countries where they are prohibited and the figures have been remarkably consistent — in the United States,3-6 Denmark,7 England8 and Australia,9 between 2.2% and 12.3% of doctors report that they have assisted death in response to an explicit request. Outside of the Netherlands, however, few studies have broadened the question of assisted death to include instances where there has been no explicit request. In a study comparing North American and Dutch physicians, 2% and 15%, respectively, reported "ending of life without an explicit request from the patient", but the numbers were small and the difference not statistically significant.10 In Australia, it has been claimed that 3.5% of all deaths are cases of "ending life without explicit request".11 A potentially confounding issue faced by all researchers of assisted deaths is that of intention. Doctors sometimes give large doses of potentially lethal drugs to terminally ill patients to treat symptoms, foreseeing but not necessarily intending a medically hastened death. This kind of action has been shown consistently to have the approval of more than 80% of doctors.1,5,7,12 However, there may be considerable ambiguity about a doctor's intention,13 and some studies have indeed noted partial or dual intentions (to relieve pain and to hasten death) when analgesic drugs are given.1 An intention to hasten death has been suggested as being best distinguished by the use of drugs in doses greater than those required for symptom control.14 Our study incorporates such a distinction. Our objective was to conduct a survey of attitudes to and practices regarding assisted death using questions that were absolutely explicit about the agent's intention. Methods Sample A list was obtained of all doctors with Australian mailing addresses registered as general surgeons with the Royal Australasian College of Surgeons (n = 1218). No attempt was made to exclude those who had recently retired or who had subspecialised. After excluding 200 surgeons who had been randomly selected for pretesting and those who had moved, were ill or deceased (26), a final eligible sample of 992 remained. Survey instrument The survey instrument was an anonymous, self-administered, mail-out questionnaire (available on the MJA website at <http://www.mja.com.au>. The questionnaire was developed from a review of the literature, discussion within a multidisciplinary research group and extensive pretesting, including 13 interviews and consistency checks on the responses to 200 mailed questionnaires. Advice was sought on specific questions from three independent ethicists with substantially different ethical backgrounds in ethics. All questions were closed (mostly "Yes/No"), but respondents were invited to make additional comments on the final page of the survey. The survey instrument included a clinical vignette (see Appendix), and some of the questions alluded to this vignette. Our main question on experience with assisted death (Question 1, Box 2) was presented alone under a separate heading and was prefaced by the comment "All further questions address general issues and are not specific to the scenario [clinical vignette] . . .". Key words in Question 1 ("greater" and "intention") were printed in bold and underlined. Further testing of the understanding of this question was undertaken by interview with 10 general physicians after they had completed the entire questionnaire. Administration of questionnaire The questionnaire and three subsequent reminder letters were sent according to a set protocol15 commencing in August 1999. Intention to participate was indicated by return of a labelled consent or refusal card separate from the unmarked questionnaire, and reminders were sent to those who had not returned a consent or refusal card. Statistical analysis Affirmative responses are reported as a proportion of all respondents (not just those answering the question), except where explicitly stated. The rate of missing data was less than 4.4% for all questions and less than 2.3% for questions reported here. The Wilson procedure with correction for continuity was used to calculate 95% confidence intervals (CI) for single proportions.16 To determine the influence of the five demographic variables (Box 1) on attitudes and practice, logistic regression analysis was performed using SAS for Windows.17 Variables which were significant at α = 0.2 (Pearson's χ2 or Fisher's exact test) were entered into the logistic regression model and then eliminated in a backward stepwise procedure until only those variables remained that were statistically significantly associated with an affirmative response. Ethical approval Ethical approval for our study was obtained from the Hunter Area Research Ethics Committee, from the Human Research Ethics Committee of the University of Newcastle, and from the Ethics Committee of the Royal Australasian College of Surgeons. Results Of the eligible sample of 992 surgeons, 683 returned questionnaires (response rate, 68.9%). This sample size was associated with a precision of ± 4% (95% CI). Six hundred and fifty-four surgeons (65.9%) returned a separate consent card or other communication indicating intention to participate; 166 (16.7%) indicated that they did not wish to participate and 172 (17.3%) did not respond. Of those who declined to participate, 25 volunteered reasons. Of the respondents, 210 (30.7%) volunteered additional comments. Demographic features of respondents are summarised in Box 1. Only age, sex and years in practice were available for non-respondents. There were no sex differences between respondents and non-respondents, but older surgeons and those who had been in practice for longer were slightly less likely to respond. Results for selected questions are given in Box 2, with wording and textual emphasis unchanged from that in the questionnaire. Use of drugs with the intention of ending life or hastening death Twenty-nine respondents (4.2%) reported having given a bolus lethal injection "in response to a sincere and unambiguous request", 13 (1.9%) reported assisting with suicide (Questions 3, 4, 5 and 6 in Box 2), and 36 respondents (5.3%; 95% CI, 3.8%-7.3%) had done one or both of these. Two hundred and forty-seven respondents (36.2%) reported that they had, for the purpose of relieving a patient's suffering, given drugs in doses greater than those required to relieve symptoms with the intention of hastening death (Question 1, Box 2). Of these, 139 indicated (in response to questions 3, 5 and 6, Box 2) that they had never received a sincere and unambiguous request for a lethal injection, and had never granted a request for assisted suicide. Thus, at least 20.4% of the entire sample (139/683; 95% CI, 17.4%-23.6%) have apparently given drugs with the intention of hastening death, but without the explicit request of the patient. Of the remaining 108 respondents who reported having given drugs with the intention of hastening death, it is unknown whether they have ever done so in the absence of a request. Effect of religion Religious affiliation was a significant predictor of response to questions on attitudes to and practice of intentionally assisted death. Roman Catholics were about 4-10 times more likely, and Protestants about 2-3 times more likely, to give a negative answer than colleagues who had no religious affiliation (Box 3). Discussion Our finding that very few doctors report having given a bolus lethal injection in response to a patient's request agrees with the findings of previous reports.3-9 Our study also reveals that many doctors report giving drugs in doses greater than those required to relieve symptoms, with the intention of hastening death, often in the absence of an explicit request. Outside the Netherlands, this has not been widely reported. Our main question on experience with assisted death was deliberately written to include the use of infusions of drugs, with or without a request. That some doctors are prepared to hasten death by infusion (but not by bolus) was confirmed by volunteered comments: "It is difficult to actually administer a lethal injection, but setting up a potentially lethal system allows a degree of psychological and physical separation from the actual event." "The giving of a single lethal injection would be unusual. Increasing infusion is a far preferable and controllable method." "I also appreciate the inconsistency between being prepared to 'up the dose', but not being prepared to give it as a bolus — but that's the way I feel . . ." "I have frequently used large doses of morphine (previously heroin!) to hasten death . . . I can't see the ethical difference between this and a bolus injection in a fully informed patient . . . but simply would not be capable of the deed myself." "Talk of bolus injections in fully competent patients is not the real-life situation. We help very ill patients to die by a combination of sustenance withdrawal, increasing analgesia and 'masterly inactivity'." Clearly, surveys that have limited their inquiry to the administration of a bolus lethal injection are likely to have underestimated doctors' involvement with assisted death. It may be that researchers have avoided addressing the use of infusions because of uncertainty about a doctor's intentions in such circumstances. However, it is possible to be unambiguous. Our question specified an intention to hasten death, and a dose of drug greater than that required to treat symptoms. Physician interviews confirmed that the question was indeed understood by most respondents, but there is also quantitative evidence of this from the survey itself. Firstly, there was internal consistency: 95% of those who answered affirmatively to Question 1 also answered affirmatively to a question on the morality of giving drugs by slow intravenous infusion with the intention of hastening death (Question 2, Box 3), although the questions were separated in the questionnaire. Secondly, there was a profound effect of religious affiliation on responses to both Questions 1 and 2, with odds ratios that were similar to those measured for questions relating to euthanasia by bolus lethal injection or assisted suicide (Box 3). The only plausible explanation for this strong association is that the respondents understood Questions 1 and 2 to be about the intentional hastening of a patient's death. In contrast, responses to a question about the use of an infusion of drugs that might incidentally hasten death (Question 7, Box 3) showed no effect of religion, with more than 90% of respondents supporting such action regardless of religious affiliation. Euthanasia and palliative care — same drugs, same doses? Our question specified a dose of drugs greater than that required to relieve symptoms, but it may be difficult to assess symptoms once consciousness has begun to deteriorate in a dying patient. Possibly the only way to be sure that a patient is not suffering at this point is to render him or her deeply unconscious by giving generous doses of opiates and/or sedatives. It would then be probable, but not certain, that the doses used were greater than those required to relieve symptoms. One respondent volunteered a comment to this effect: "Intravenous infusion may be used to induce an unconscious state at a rate equal or greater than that to relieve symptoms, whereby the practitioner and family are then guaranteed that all the patient's symptoms are relieved . . ." Whether the use of generous doses of analgesic or sedative drugs constitutes "good palliative care" or "non-voluntary euthanasia" depends, according to a widely held view, on the doctor's self-professed intention.14 Question 1 clearly specified an intention to hasten death. Doctors who responded affirmatively to this question have therefore crossed a legal threshold and, according to some, a moral threshold. However, it is not clear that they have acted differently from their colleagues other than by reporting their own mental state differently. Furthermore, it may be hard to distinguish many of their actions from those of Dutch doctors who have performed "life-terminating acts without explicit request". At least 20% of our entire sample appears to have given drugs with the intention of hastening death in the absence of an explicit request, similar to the 23% of Dutch doctors who report performing "life-terminating acts without explicit request".1 There is a discrepancy between the relatively large proportion (36.2%) of surgeons who report giving drugs with the intention of hastening death, and the small proportion (5.3%) who report giving a bolus lethal injection or assisted suicide in response to an explicit request. We believe that many of those who make up this difference have given generous doses of analgesics or sedatives by infusion to dying patients. The circumstances of these deaths, other than in the agent's reported intention, may not differ substantially from what is widely accepted as good palliative care. Acknowledgements We would like to thank Professor Miles Little for critical reviews of our questionnaire and methodology, and Professor Grant Gillett and Dr Bernadette Tobin for providing opinions on the wording of key questions. This research project was conducted with the assistance of a Royal Australasian College of Surgeons research scholarship. Competing Interests None declared. References van der Maas PJ, van der Wal G, Haverkate I, et al. Euthanasia, physician assisted suicide, and other medical practices involving the end of life in the Netherlands, 1990-1995. N Engl J Med 1996; 335: 1699-1705. Pijnenborg L, van der Maas PJ, van Delden JJM, Looman CWN. Life-terminating acts without explicit request of patient. Lancet 1993; 341: 1196-1199. Meier DE, Emmons C, Wallenstein S, et al. A national survey of physician-assisted suicide and euthanasia in the United States. N Engl J Med 1998; 338: 1193-1201. Back AL, Wallace JI, Starks HE, Pearlman RA. Physician-assisted suicide and euthanasia in Washington State. JAMA 1996; 275: 919-925. Fried TR, Stein MD, O'Sullivan PS, et al. Limits of patient autonomy. Arch Intern Med 1993; 153: 722-728. Lee MA, Nelson HD, Tilden VP, et al. Legalizing assisted suicide - views of physicians in Oregon. N Engl J Med 1996; 334: 310-315. Folker AP, Holtug N, Jensen AB, et al. Experiences and attitudes towards end-of-life decisions amongst Danish physicians. Bioethics 1996; 10: 233-249. Ward BJ, Tate PA. Attitudes among NHS doctors to requests for euthanasia. BMJ 1994; 308: 1332-1334. Kuhse H, Singer P. Doctors' practices and attitudes regarding voluntary euthanasia. Med J Aust 1988; 148: 623-627. Willems DL, Daniels ER, van der Wal G, et al. Attitudes and practices concerning the end of life: a comparison between physicians from the United States and from The Netherlands. Arch Intern Med 2000; 160: 63-68. Kuhse H, Singer P, Baume P, et al. End-of-life decisions in Australian medical practice. Med J Aust 1997; 166: 191-196. Emanuel EJ, Fairclough DL, Daniels ER, Clarridge BR. Euthanasia and physician assisted suicide: attitudes and experiences of oncology patients, oncologists, and the public. Lancet 1996; 347: 1805-1810. Quill TE. The ambiguity of clinical intentions. N Engl J Med 1993; 329: 1039-1040. Gillon R. Foreseeing is not necessarily the same as intending. BMJ 1999; 318: 1431-1432. Dillman DA. Mail and telephone surveys: The total design method. New York: Wiley, 1978. Newcombe, Robert G. Two-sided confidence intervals for the single proportion: comparison of seven methods. Stat Med 1998; 17: 857-872. SAS system for Windows [computer program], version 6.12. Cary, NC: SAS Institute Inc, 1998. (Received 28 May, accepted 3 Sep, 2001) Appendix: Abridged version of the clinical vignette Mrs S, a 60-year-old widow, presents to hospital with peritonitis and confusion and is found at operation to have a perforated carcinoma of the rectosigmoid junction which is unresectable, and is associated with peritoneal metastases. You perform a limited resection and end-colostomy. After 10 days she has recovered from her sepsis, but has persistent pain from her metastatic disease, and is devastated to find that she has a colostomy. She says she has "had enough" and she repeats this on several occasions over the next week. You organise consultations with a psychiatrist (who does not believe she is clinically depressed), a social worker, a stomal therapist and a palliative-care specialist who prescribes oral slow-release morphine and a co-analgesic and sees her daily to adjust doses. Five weeks after her operation, Mrs S remains in hospital because of general weakness, lack of a carer at home, and because of her pain, which is still not adequately controlled with oral analgesia. She says that she doesn't want to go on living, and that it is not just the severe pain. She complains of having lost her independence, that she is uncomfortable, and that she dislikes living with a stoma. She says that she has had a good life, but that she is "ready to go". Mrs S then asks if you will help her to die. Subsequent questions clarified explicitly what Mrs S meant by "help her to die". The complete vignette is included in the survey instrument which is available at <http://www.mja.com.au>. Authors' details Faculty of Medicine and Health Sciences, University of Newcastle, Newcastle, NSW. Charles D Douglas, BMed(Hons), BSc(Maths), Surgical Registrar, Discipline of Surgical Science, School of Medical Practice; Ian H Kerridge, FRACP, MPhil, Lecturer, Clinical Unit in Ethics and Health Law; John R McPhee, BCom(Hons) (LegStud), Consultant in Health Law, Clinical Unit in Ethics and Health Law; Lynne Hancock, BSc(Hons), PhD, Senior Lecturer, Discipline of Behavioural Science; and Program Manager, Hunter Centre for Health Advancement, Wallsend, NSW; Allan D Spigelman, FRACS, MD, Professor, Discipline of Surgical Science, School of Medical Practice. Hunter Centre for Health Advancement, Wallsend, NSW. Katherine J Rainbird, BA(Hons), PhD, Research Associate. Reprints will not be available from the authors. Correspondence: Dr C D Douglas, c/- Professor A D Spigelman, Discipline of Surgical Science, Faculty of Medicine and Health Sciences, University of Newcastle, Locked Bag No 1, Hunter Region Mail Centre, Newcastle, NSW 2310. cdouglasauATyahoo.com.au Make a comment 1: Demographic characteristics of general surgeons — respondents and non-respondents Frequency Demographic characteristic Respondents Non-respondents Age* n=680 n=342 35 or less 27 (4.0%) 5 (1.5%) 36-45 147 (21.6%) 71 (20.8%) 46-55 199 (29.3%) 72 (21.1%) 56-65 154 (22.6%) 90 (26.4%) More than 65 153 (22.5%) 104 (30.5%) Sex† n=680 n=341 Male 651 (95.7%) 330 (96.8%) Female 29 (4.3%) 11 (3.2%) Years in practice‡ n=680 n=342 Less than 10 12 (1.8%) 2 (0.6%) 11-20 150 (22.1%) 70 (20.5%) 21-30 205 (30.1%) 71 (20.8%) 31-40 162 (23.8%) 86 (25.2%) More than 40 151 (22.5%) 113 (33.1%) Practice setting n=674 Teaching hospital 368 (54.6%) Other urban hospital 167 (24.8%) Rural hospital 139 (20.6%) Religious group n=675 Roman Catholic 115 (17.0%) Protestant 225 (33.3%) Jewish 24 (3.6%) Other 25 (3.7%) No religion 286 (42.4%) *<0.01 (χ2=17.4). †=0.10. ‡<0.01 (χ2=20.5). Back to text 2: Frequency of affirmative responses to selected questions. Data are number of affirmative responses and percentage of entire sample, with 95% CIs in parentheses Question* Affirmative responses Administration of drugs with the intention to hasten death 1. Have you ever, for the purpose of relieving a patient's suffering, given drugs (orally or parenterally, by bolus or by infusion) in doses greater than those required to relieve symptoms, with the intention of hastening the patient's death? 247 36.2% (32.6%-39.9%) 2. Do you believe that there are any circumstances in which it is morally acceptable to give a terminally ill patient sedatives or analgesics by slow intravenous infusion, in doses greater than those required to relieve symptoms, with the intention of hastening the patient's death? 370 54.1% (50.4%-58.0%) Administration of lethal drugs by bolus injection on request* 3. Have you ever received a similar request (that is, a sincere and unambiguous request, from a competent patient, for you to administer a lethal dose of a drug)? 187 27.4% (24.1%-30.9%) 4. Have you ever granted such a request by giving a bolus lethal injection? 29 4.2% (2.9%-6.1%) Assisted suicide* 5. Have you ever received such a request (ie, an apparently sincere request, from a competent patient, to provide him or her with the means to commit suicide)? 70 10.2% (8.1%-12.8%) 6. Have you ever agreed to and carried out such an action? 13 1.9% (1.1%-3.3%) Treatment of pain by analgesic infusion* 7. Would you be prepared to commence an opioid analgesic infusion for Mrs S's pain, and to run this at whatever dose is necessary to keep Mrs S comfortable (even if this may, incidentally, hasten her death)? 641 93.9% (91.7%-95.5%) 8. Suppose Mrs S continues to complain of pain until the infusion has been increased to a rate at which she is drowsy but rousable. She is apparently comfortable, and the infusion is left at this rate overnight. The following morning, the nursing staff inform you that her respiratory rate has dropped to 6, that she is no longer rousable, and that her oxygen saturation is 82%. What would you do now? -Reduce the infusion rate to see if she is comfortable at a lower dose 318 46.6% (42.8%-50.4%) -Continue the infusion at the current rate 296 43.3% (39.6%-47.2%) -Increase the infusion rate 24 3.5% (2.3%-5.3%) *Questions 3, 4, 5, 6, 7, and 8 refer to the clinical vignette (see Appendix). All questions are "Yes/No" questions, except Question 7, which included "undecided" as an alternative, and Question 8, which offered the three alternatives indicated. The numbering and grouping of questions have been changed from the original questionnaire, but the wording and textual emphasis are identical. The headings used in this Box were not used in the original questionnaire. Back to text 3: Influence of religious affiliation on response to selected questions.* Results are proportions in each religious group responding affirmatively (odds ratios [OR] are relative to "No religion", with 95% CIs in parentheses). (The numbering of the questions coincides with that for Box 2.) 1. Have you ever, for the purpose of relieving a patient's suffering, given drugs (orally or parenterally, by bolus or by infusion) in doses greater than those required to relieve symptoms, with the intention of hastening a patient's death? Roman Catholic Protestant Jewish Other No religion 19.3% OR, 0.28 (0.16-0.47) P 33.9% OR, 0.59 (0.41-0.86) P 33.3% OR, 0.58 (0.24-1.4) P=0.22 36.0% OR, 0.65 (0.28-1.52) P=0.32 46.4% OR, 1.00 2. Do you believe that there are any circumstances in which it is morally acceptable to give a terminally ill patient sedatives or analgesics by slow intravenous infusion, in doses greater than those required to relieve symptoms, with the intention of hastening the patient's death? Roman Catholic Protestant Jewish Other No religion 31.0% OR, 0.19 (0.12-0.31) P 48.6% OR, 0.40 (0.28-0.59) P 62.5% OR, 0.71 (0.29-1.75) P=0.46 60.0% OR, 0.61 (0.26-1.44) P=0.49 70.0% OR, 1.00 7. Would you be prepared to commence an opioid analgesic infusion for Mrs S's pain, and to run this at whatever dose is necessary to keep Mrs S comfortable (even if this may, incidentally, hasten her death)? (see Appendix)† Roman Catholic Protestant Jewish Other No religion 93.0% 95.1% 100% 96.6% 92.7% *Question 7 refers to the clinical vignette (see Appendix). †Because of the small numbers of negative responses to this question, χ2 analysis was potentially invalid using the categories listed. Analysis was repeated with all religious groups combined. The results were: religious groups, 94.9%; no religion, 92.7% (P=0.22). Back to text

Charles D Douglas · Ian H Kerridge · Katherine J Rainbird · John R McPhee · Lynne Hancock · Allan D Spigelman

Death and the Physician On causing death Palliative-care specialists should be the ones fine-tuning pain and symptom control MJA 2001; 175: 517-518 Fellows of the Royal Australasian College of Surgeons were recently asked to complete a postal survey about end-of-life decisions and euthanasia. The questions related to a clinical vignette of a competent and informed woman with advanced intra-abdominal colonic cancer who had made a clear request for assistance to die. She has the active involvement of a specialist palliative care service, and appears to have reached the preterminal stage of her illness course. This means that the goals of her care are palliative, but she is not yet quite at the stage of needing terminal care (care given during the last hours or days of life), and indeed could be some weeks or even months away from death.1 The grounds for this request are generalised weakness (for which little more can probably be done), lack of a carer at home (for which there are practical solutions, although these may not be emotionally satisfactory), and poor pain control (for which much could still be done, as she has only had an oral opioid and "a co-analgesic"). In this issue of the Journal, Douglas and colleagues present the findings of this survey,2 the latest in a series of such studies in Australia and elsewhere.3-6 The claims to novelty lie in the study population (surgeons in Australia) and the strong focus of questioning on intention, and the presence or absence of patient consent (20% of the surgeons in this study reported that they had performed life-terminating acts without an explicit and persistent request). Douglas et al infer that the discrepancy between the relatively large proportion of surgeons who report giving drugs with the intention of hastening death and the small proportion who report giving a bolus lethal injection or assisting suicide in response to a specific request is made up of surgeons who "have given generous doses of analgesics or sedatives by infusion to dying patients", and conclude that "the circumstances of these deaths, other than in the agent's reported intention, may not differ substantially from what is widely accepted as good palliative care". Thus, the argument of the article by Douglas et al might be paraphrased as follows: a small proportion of a sample of Australian surgeons report that they have practised active euthanasia and assisted suicide, but about a third have intentionally hastened death by infusion, and over half say they agree with the practice. As they used infusions, and palliative-care practitioners use infusions, intention is the only basis for a distinction between what the surgeons did and "accepted" palliative care, and indeed there may be no distinction. The logic of this line of argument is questionable, but it is certainly true to say that modern palliative-care therapeutic practice regularly involves the infusion of analgesic and sedative drugs, and it is based on intention. In a previous editorial in the MJA, I discussed the variability of palliative care knowledge and experience in the medical profession, which would no doubt also apply to this study population. In the absence of formal training in palliative care . . . doctors' attitudes and clinical behaviour are complex and variable. They range from abrupt cessation of treatment, minimalist palliative care and treatment directed at bringing about a rapid dying process, to excessive caution about being seen to be instrumental in causing the death, particularly with regard to the providing pain and symptom relief, withdrawal or non-initiation of artificial hydration and alimentation and cardiopulmonary resuscitation.7 While a doctor's intention may not always be easy to validate, evaluation of intention and motive is fundamental to legal analysis, and many would argue that intention also determines the moral character of medical interventions. Any drug can endanger life if used inappropriately. However, the knowledge and skills built up over some 30 years of palliative care practice have shown that opioids and sedative drugs can be used quite safely for symptom control without bringing causation into question if the parameters of accepted practice are followed. Indeed, Douglas et al acknowledge that there are "safe" doses by the very fact that their study questions probe intent by asking specifically about doses "greater than those required to relieve symptoms". Pain control does not require opioid dose escalation which hastens death, and titration against pain and adverse effects is the norm. In terminal sedation, the sedative drugs (usually the benzodiazepines midazolam and clonazepam) are titrated according to the level of agitation and distress displayed by the patient. We cannot know when a particular patient would have died in the absence of palliative interventions or treatment abatement, particularly during the final dying process.8 There is agreement that the final process of dying should not be prolonged, and that there should be no compromise on symptom control and patient dignity. Searching for the distinction between accepted palliative care and euthanasia in unverifiable outcomes in the last hours of life will not clarify unnecessarily muddied waters, and does not of itself seem to be an important question. This distinction has to rest on intention and the titration of drug doses to effects, balancing the wanted with the unwanted effects. The volunteered comments of the surgeons quoted in the report by Douglas et al reflect serious causal and ethical confusion. Respondents appear to take dubious comfort from some sort of proximate causal argument, whereby infusions are seen intuitively as a less direct and immediate, and therefore acceptable, means of causing death, in contrast to a bolus injection, where causation is immediate, direct and unambiguous. The goals and intentions of drug prescribing and principles of pharmacology in palliative care can and should be made clear, and, as in any domain of medicine, honest communication of anticipated outcomes from treatment is required. The Chief Coroner of Ontario (Dr James Young, 1997) seems to have captured the essence of the basic underlying principles of therapeutic intervention in palliative medicine in laying down four conditions which need to be satisfied for palliative care interventions to be legal in his jurisdiction. These conditions should be universally applicable: care must be intended solely to relieve suffering; it must be administered in response to suffering or signs of suffering; it must be commensurate with that suffering; and it cannot be a deliberate infliction of death. Documentation is required, and drug doses must increase progressively.9,10 Australian surgeons have a vital role to play in ensuring that their patients receive timely and appropriate palliative care. Their clinical skills and knowledge about diseases and surgical management are valued, and surgical procedures have a real role in the palliation of symptoms in selected patients. Continuity of care is of paramount importance. However, the community does not look to the surgical workforce to fine-tune pain and symptom control in palliative care patients, and assistance from palliative-care specialists should be sought. If surgeons in this country are really intending to hasten their patients' deaths, with 20% reporting that they have done so without patient knowledge or consent, then the community needs to know, and the study by Douglas et al meets that purpose. However, in the absence of actual case data, it is impossible to say whether these surgeons are delivering good palliative care, whether the patients and families are satisfied, or indeed whether their prescribing really is any different from that of palliative care practitioners. Michael A Ashby Professor, and Director of Palliative Care, McCulloch House Monash Medical Centre, Southern Health; and Southern Clinical School Faculty of Medicine, Nursing and Health Sciences Monash University, Melbourne, VIC Ashby M, Stoffell B. Therapeutic ratio and defined phases: proposal of an ethical framework for palliative care. BMJ 1991; 302: 1322-1324. Douglas CD, Kerridge IH, Rainbird KJ, et al. The intention to hasten death: a survey of attitudes and practices of surgeons in Australia. Med J Aust 2001; 175: 511-515. Stevens CA, Hassan R. Management of death, dying and euthanasia: attitudes and practices of medical practitioners in South Australia. J Med Ethics 1994; 20: 41-46. Kuhse H, Singer P. Doctors' practices and attitudes regarding voluntary euthanasia. Med J Aust 1988; 148: 623-627. Baume P, O'Malley E. Euthanasia: attitudes and practices of medical practitioners. Med J Aust 1994; 161: 137-144. Kuhse H, Singer P, Baume P, et al. End of life decisions in Australian medical practice. Med J Aust 1997; 166: 191-196. Ashby M. The fallacies of death causation in palliative care [Editorial]. Med J Aust 1997; 166: 176-177. Ashby M. Natural causes? Palliative care and death causation in public policy and the law [MD Thesis]. Adelaide: University of Adelaide, 2001. Of life and death: Report of Special Senate Committee on Euthanasia and Assisted Suicide. Ottawa: Minister of Supply and Services, Canada, 1995: 26-27. (Catalogue No. YC2-351/1-OIE.) Lavery JV, Singer P. The "Supremes" decide on assisted suicide: what should a doctor do? CMAJ 1997; 157: 405-406. Make a comment

Michael A Ashby

Death and the Physician The emotional impact on physicians of hastening the death of a patient Ilinka Haverkate, Agnes van der Heide, Bregje D Onwuteaka-Philipsen, Paul J van der Maas and Gerrit van der Wal MJA 2001; 175: 519-522 For commentaries, see Kelly and Ryan Abstract - Methods - Results - Discussion - Acknowledgements - Competing Interests - References - Authors' details - - More articles on Palliative care Abstract Objective: To investigate the emotional feelings reported by physicians in the Netherlands after having performed euthanasia or other medical end-of-life decisions. Design: Nationwide interview study in the Netherlands, November 1995 through February 1996. Participants and setting: A random sample of 405 physicians (general practitioners, nursing home physicians, and clinical specialists). Main outcome measures: Subsequent feelings of physicians about their most recent cases (if any) of euthanasia, assisted suicide, life-ending without an explicit request from the patient, and alleviation of pain and other symptoms with high doses of opioids. Results: The response rate was 89%. In 52% of all cases of hastening death, physicians had feelings of comfort afterwards, which included feelings of satisfaction in 44% and of relief in 13%. Feelings of discomfort were reported in 42%, most frequently referred to as emotional (28%) or burdensome (25%). Feelings of discomfort were highest for euthanasia (75%; P < 0.000). 95% of physicians were willing to perform euthanasia or assisted suicide again in similar situations. Afterwards, 5% had doubts, but none had regrets, about performing euthanasia. Conclusions: Hastening the death of a patient evokes different feelings among physicians. Although performing euthanasia is often experienced as burdensome and emotional, granting the ultimate wish of a competent patient may also give physicians a feeling of having contributed to the quality of the dying process. In the Netherlands, the Dutch Termination of Life on Request and Assisted Suicide (Review Procedures) Act has been accepted by the Dutch parliament and will be effective probably by the end of 2001. Under this law, euthanasia and assisted suicide are still criminal offences, but the penal code has been amended to exempt doctors from criminal liability if they report their actions and show that they have satisfied the requirements for prudent practice. The most important requirements are unbearable and hopeless suffering; voluntary, persistent and well-considered request; consultation; written reporting of the decision; and notification. In most other countries, no such procedure exists. Although the open debate about euthanasia and assisted suicide in the Netherlands has resulted in relatively transparent medical practice, they are still exceptional acts that go beyond "normal" medical decision-making and are potentially emotionally troubling for doctors. We know of just a few studies of the personal feelings of physicians after participating in euthanasia and assisted suicide.1-3 Here we present the results of an analysis of the emotional feelings reported by doctors in the Netherlands after performing euthanasia or other medical end-of-life decisions. The data are derived from the 1995/1996 nationwide survey on end-of-life decision-making in the Netherlands.4,5 Methods Study population The study design and methods of this study are the same as those described in the 1995/1996 investigation.4 A random sample of 405 doctors was interviewed. The sample was obtained from the registration files of the Royal Dutch Medical Association and the Dutch Institute for Health Care Research, and included 124 general practitioners, 74 nursing home physicians, and 207 clinical specialists from five fields of medicine (cardiology, surgery, internal medicine [including oncology], respiratory medicine and neurology). Physicians in these categories attend 87% of all deaths which occur in hospitals, and almost all other deaths outside hospitals, in the Netherlands. Inclusion criteria were that doctors must have been practising in their registered specialties since 1 January 1994, and that they had been working in the same institution ever since. Data collection Interviews were conducted from November 1995 through February 1996 by over 30 experienced doctors who had received intensive training for this purpose. Interviews were guided by a semistructured questionnaire (participants were not paid). In the interview, doctors were asked to provide detailed information about their last case, if any (1 or 0), of euthanasia, assisted suicide, the ending of life without an explicit request from the patient, and alleviation of pain and other symptoms with high doses of opioids. For the purpose of this study, the questionnaire contained questions about doctors' subsequent feelings, doubts or regrets and support-seeking. The responses were partly open-ended (prestructured for the research team only, which meant that the interviewers made their own judgement on the content and then categorised it; this was checked with the respondents) and partly closed to questions. Further, the reported feelings were categorised for the analyses as either feelings of "comfort", which included feelings of satisfaction and relief, or feelings of "discomfort", which included feelings described as burdensome, emotional or a heavy responsibility. Definitions Euthanasia: Administering drugs with the explicit intention of ending a patient's life at the patient's explicit request. Assisted suicide: Prescribing or supplying drugs with the explicit intention of enabling the patient to end his or her own life. Life ending without an explicit request: Administering drugs with the explicit intention of ending the patient's life without a concurrent explicit request from the patient. Alleviation of pain and other symptoms with opioids: Administering drugs in doses which the interviewees believed large enough to have a probable life-shortening effect. Statistical analysis To extrapolate the findings to all physicians in the Netherlands, weights were calculated based on the percentages of the various types of physicians represented in the sample. Our estimates of the different variables were corrected for the 13% of in-hospital deaths attended by physicians in specialties other than the five sampled, on the assumption that among these remaining deaths the various types of medical end-of-life decisions were as frequent as among the deaths studied. Associations between physician or patient characteristics and reported feelings were tested for statistical significance with χ2 tests for categorical variables and with t tests for continuous variables. Results Response rate Of the original random sample of 559 physicians, 83 did not meet the inclusion criteria, 21 either had a chronic illness or could not be located, and 50 were unwilling to participate in the study, giving a response rate of 89%. Feelings reported by physicians Data on the feelings of physicians after "perceived" hastening of the death of a patient by giving life-ending drugs were available for 159 cases (by 159 physicians) of euthanasia, 34 cases of assisted suicide, 74 cases of ending life without an explicit request from the patient, and 291 cases of alleviation of pain or other symptoms with potentially life-shortening effects. Our findings are shown in Box 1. In 52% of all cases, physicians reported that they had feelings of comfort afterwards, while feelings of discomfort were reported in 42% (most frequently, emotional or burdensome). Feelings of comfort and discomfort were analysed for possible associations with the type of end-of-life decision and physician or patient characteristics (Box 2). The percentage of physicians who had feelings of comfort (satisfaction or relief) afterwards was lowest in cases of alleviating pain or other symptoms and highest when they had assisted with suicide, but the differences between the various types of end-of-life decisions were not significant. For physicians who had feelings of discomfort (burdensome, emotional, heavy responsibility) there were significant differences between the end-of-life decisions (see Box 2). General practitioners reported both feelings of comfort and discomfort more frequently than clinical specialists and nursing home physicians, but other physician characteristics, such as age, sex, religious affiliation and the number of previous cases of euthanasia or assisted suicide, were not related to feelings of comfort or discomfort. Patient characteristics significantly related to a higher frequency of feelings of comfort were female sex, and shortening of life by less than one month. Feelings of discomfort were related to patients' younger age, male sex, a diagnosis of cancer, and shortening of life by more than one month. The degree of suffering (assessed only for cases of euthanasia and assisted suicide) was related to feelings of comfort in that more severe suffering was more frequently related to feelings of comfort. Finally, ending a patient's life without an explicit request, and alleviation of pain or other symptoms, more frequently evoked later feelings of discomfort when the explicit intention of the physician had been to hasten death, compared with cases where the intention had only partially been to hasten death. Most recent case compared with former cases Of the 110 physicians who had performed euthanasia previously, 45% reported that their most recent case of euthanasia had been just as difficult as previous cases. Among all physicians, 26% found their most recent case less difficult than previous cases and 29% thought it had been more difficult. The percentages finding their most recent case equally difficult, less difficult and more difficult for assisted suicide (n = 14) were 38%, 23% and 40%, respectively, and for life ending without an explicit request from the patient (n = 45) 55%, 34% and 10%, respectively. Willingness to perform again Box 3 shows that the vast majority of the physicians would be willing to perform euthanasia or assisted suicide again in similar circumstances. Afterwards, 9 of the physicians (5%) had doubts, but none had regrets, about performing euthanasia; these doubts concerned, among other things, the consideration of treatment alternatives, the amount of time and latitude involved in the decision-making, the choice between euthanasia and assisted suicide, and the role of the relatives. In 85% of cases, the physician thought that the quality of dying had been improved considerably by euthanasia, and 12% thought that it had been improved somewhat. Six physicians (7%) had subsequent doubts about ending a patient's life without an explicit request. These doubts concerned (each mentioned once) the amount of time taken to make the decision, the involvement of the patient, the competence of the patient, possible pressure from others, the delay in administering the drugs, and neglect of the formal aspects of the decision-making. Three physicians (4%) had regrets; one about the amount of latitude involved in decision-making, one about being pressured by others and one because the relatives were not sufficiently involved in the decision-making. In 67% of cases, the physician thought that the quality of dying had been improved considerably by the end-of-life decision, and in 26% the physician thought it had been improved somewhat. In two cases, the physicians thought the quality of the dying process had not been improved at all. Support afterwards Box 3 shows that, among the 159 physicians who had performed euthanasia, 43% later sought support in coping. Most sought support privately from friends or family and many sought support from colleagues. One sought professional help. Of the 74 physicians who had ended a life without an explicit request from the patient, 16% sought support later. Again, most sought support privately, many sought support from colleagues, and none sought professional help. Discussion We found that approximately half of the physicians who had performed euthanasia or assisted suicide found it emotional or burdensome, but almost the same percentage of physicians felt satisfaction afterwards. The use of the word "emotional" in this context deserves some explanation. By "emotional", we mean a mixture of feelings such as being "touched", "out of balance" or "upset". We are aware that the classification in the analyses of emotional under the heading of "discomfort" is a simplification which does not fully capture the nuance of the feeling. One limitation of our study is that the design was retrospective, and may therefore be prone to recall bias. Further, all data are based on self-reporting by the physicians, and the number of cases in some subgroups was small. We realise that the process of decriminalisation of euthanasia and assisted suicide is quite unique to the Netherlands. However, we believe that, to a degree, our data are transferable to other countries, as these data involve decision-making that is potentially emotionally troubling for physicians outside the Netherlands as well. Although our data are five years old, we have no reason to assume that our findings regarding the emotional impact on physicians would have changed. It is striking that ending a patient's life without an explicit request later evoked feelings of discomfort (burdensome, emotional or a heavy responsibility) less frequently than did performing euthanasia or assisted suicide. Also, more physicians sought support after they had performed euthanasia than after they had ended the life of a patient without an explicit request. Thus, life-ending without an explicit request from the patient seems to have a different emotional impact on physicians than life-ending on request (ie, euthanasia or assisted suicide). This may be associated with other findings, such as the distribution of causes of death, the amount of time by which life is shortened and the medications administered, which suggests that life ending without an explicit request is more comparable with decisions to alleviate pain (where morphine was virtually the only drug given) than with euthanasia (in which neuromuscular relaxants were mostly used).4 The number of previous cases of euthanasia or assisted suicide performed by a physician seems to have had no effect on the reported emotional impact. Thus, our data do not indicate that repeated performance "numbs" the emotions or that this emotionally laden type of medical decision-making becomes part of "normal" medical practice. This was confirmed by our finding that the percentage of physicians who found their most recent case of assisted suicide less difficult than any previous cases was similar to the percentage who found their most recent case more difficult than previous cases. Despite our finding that many physicians find performing euthanasia burdensome and emotional, the vast majority indicated that they would be willing to perform euthanasia again for a patient in a comparable situation, and only a few (5%) had doubts or regrets. In a study among American oncologists, it was found that a greater percentage of oncologists (24%) later regretted having performed euthanasia. However, most of those who had participated in euthanasia or assisted suicide (54%) found comfort in knowing that they "helped a patient end his or her life the way the patient wished", and this is comparable with the results of another US study.1,3 Granting the ultimate wish of a competent patient may give many physicians a feeling of having contributed positively to the quality of the dying process. Acknowledgements This study was supported by a grant from the Dutch Ministry of Justice and Health, Welfare and Sports. Competing Interests None declared. References Emanuel EJ, Daniels ER, Fairclough DL, Clarridge BR. The practice of euthanasia and physician-assisted suicide in the United States: adherence to proposed safeguards and effects on physicians. JAMA 1998; 280: 507-513. Ponsioen BP. How does the physician learn to live with euthanasia? [in Dutch]. Ned Tijdschr Geneeskd 1983; 127: 961-964. Meier DE, Emmons CA, Wallenstein S, et al. A national survey of physician-assisted suicide and euthanasia in the United States. N Engl J Med 1998; 338: 1193-1201. Van der Maas PJ, Van der Wal G, Haverkate I, et al. Euthanasia, physician-assisted suicide, and other medical practices involving the end of life in the Netherlands 1990-1995. N Engl J Med 1996; 335: 1699-1705. Van der Wal G, Van der Maas PJ, Bosma JM, et al. Evaluation of the notification procedure for physician-assisted death in the Netherlands. N Engl J Med 1996; 335: 1706-1711. (Received 23 Apr, accepted10 Jul, 2001) Authors' details Vrije Universiteit Medical Centre, Institute for Research in Extramural Medicine, Department of Social Medicine, Amsterdam, The Netherlands. Ilinka Haverkate, PhD, Psychologist; Bregje D Onwuteaka-Philipsen, PhD, Researcher; Gerrit van der Wal, MD, PhD, Professor. Department of Public Health, Erasmus University Rotterdam, Rotterdam, The Netherlands. Agnes van der Heide, MD, PhD, Epidemiologist; Paul J van der Maas, MD, PhD, Professor. Reprints will not be available from the authors. Correspondence: Dr I Haverkate, VU Medical Centre, EMGO-Institute, Van der Boechorststraat 7, 1081 BT Amsterdam, The Netherlands. I. Haverkate.gpnhATmed.vu.nl Make a comment 1: Physicians' feelings after their most recent case of euthanasia, assisted suicide, life ending without an explicit request, and alleviation of pain and symptoms (weighted percentages) Euthanasia (n=159) Assisted suicide (n=34) Life ending without an explicit request (n=74) Alleviation of other symptoms (n=291) Total (n=558) Feelings of "comfort"* Satisfactory 43% 60% 43% 42% 44% Relief 13% 7% 18% 14% 13% Total* 52% 63% 56% 48% 52% Feelings of "discomfort"* Burdensome 50% 40% 19% 7% 25% Emotional 48% 49% 24% 11% 28% Heavy responsibility 32% 22% 12% 6% 17% Total 75% 58% 34% 18% 42% Other feelings* Unnatural 3% —† 3% —† 1% Natural —† —† —† 52 10% Other 2% 3% 20% 9% 8% * More than one answer possible. †Not reported. Back to text 2: Physicians' feelings after having made an end-of-life decision: relationship with type of decision and physician characteristics, and with patient characteristics (weighted percentages) Feelings of comfort Feelings of discomfort Yes No P* Yes No P* Type of end-of-life decision 0.1 0.000 Euthanasia (n=159) 52% 48% 75% 25% Assisted suicide (n=34) 63% 37% 58% 42% Life ending without an explicit request from the patient (n=74) 56% 44% 34% 66% Alleviating pain or other symptoms (n=291) 48% 52% 18% 82% Physician characteristics Specialty 0.001 0.02 General practitioner (n=221) 56% 44% 45% 55% Nursing home physician (n=62) 43% 57% 26% 74% Clinical specialist (n=275) 39% 61% 34% 66% Age 0.2 0.5 <45 (n=239) 49% 51% 40% 60% >44 (n=312) 54% 46% 57% 43% Sex 0.5 0.1 Female (n=81) 49% 51% 49% 51% Male (n=470) 52% 48% 40% 60% Religious affiliation 0.3 0.1 Yes (n=230) 49% 51% 38% 62% No (n=328) 53% 47% 44% 56% Number of previous cases of euthanasia and assisted suicide (mean [SD])† 1.5 (2.1) 1.2 (2.0) 0.2 1.3 (2.1) 1.4 (1.9) 0.8 Patient characteristics Age in years (mean [SD])† 66 (13) 64 (18) 0.1 61 (18) 68 (14) 0.000 Sex 0.04 0.04 Female (n=316) 47% 53% 46% 54% Male (n=239) 55% 45% 38% 62% Diagnosis 0.1 0.004 Cancer (n=359) 55% 45% 46% 54% No cancer (n=120) 46% 54% 30% 70% Shortening of life 0.001 0.000 More than one month (n=74) 36% 64% 86% 14% One to four weeks (n=155) 59% 41% 47% 53% Less than seven days (n=329) 52% 48% 29% 71% Degree of suffering‡ 0.002 0.3 Extreme (n=108) 63% 37% 67% 33% Unbearable (n=50) 51% 49% 76% 24% Moderately severe (n=35) 36% 64% 77% 23% Intention with which the act was performed§ 0.001 0.1 Hastening death was partially the intention (n=304) 54% 46% 19% 81% Hastening death was the explicit intention (n=58) 32% 68% 28% 72% *P value for χ2 test. †Mean (SD) for cases that resulted/did not result in feelings of comfort and that resulted/did not result in feelings of discomfort, respectively; P value for t test. ‡Degree of suffering was assessed only for cases of euthanasia and assisted suicide. §Includes only cases of life ending without an explicit request from the patient and alleviation of pain or other symptoms. Back to text 3: Willingness of physicians to assist in death again, subsequent doubts or regrets and seeking support after performing euthanasia or ending a patient's life without an explicit request (weighted percentages) Euthanasia (n=159) Life ending without an explicit request (n=74) Willingness to perform physician-assisted death again Yes 95% 82% No 3% 9% Don't know 2% 9% Subsequent doubts or regrets Doubts 5% 7% Regrets —* 4% No 95% 89% Physician sought support afterwards Yes 43% 16% If yes, from whom (n=57) (n=12) Professional 0 Colleagues 60% 44% Privately (friends or family) 83% 72% Other 0 —* *Not reported. Back to text

Ilinka Haverkate · Bregje D Onwuteaka-Philipsen

Death and the Physician Doctors, medicine and the care of the dying patient MJA 2001; 175: 523-524 Assisted suicide and euthanasia continue to spark debate both in the community and within the profession. The clinical problems surrounding the request for these acts, the impact of such interventions on medical practice and what it means when a dying patient asks for euthanasia or assisted suicide, or when a doctor provides such assistance, remain either poorly researched or largely unexplored. The capacity of a clinician to predict the prognosis for patients with severe and chronic illness is limited, as are the ways doctors and patients often communicate about these issues.1 Doctors experience significant emotional distress in caring for such patients2 and this may relate to inadequate training in communication skills, particularly in the care of the dying.3 In caring for a dying patient, the doctor is often ill-prepared for his or her own powerlessness over death, helplessness and uncertainty, and coping with the patient's dependency and the loss of control that illness can signify — themes that mirror some of the elements of the suffering experienced by the patient.4 How doctors respond to the suffering of patients and their families underpins much of the debate on euthanasia and assisted suicide. The care of the dying patient places even greater emphasis on the boundaries and frameworks that doctors need in order to provide good care.5 These boundaries demarcate the role of the doctor in a framework that promotes trust, a duty of care and protection from harm. "Compassion" can become a dangerous motivation alone when such frameworks and principles are lost.6 The emotional "disorientation" that can occur for the doctor can affect the way decisions are made, how a patient's condition is evaluated, and the doctor's perception of the benefits or risks and purpose of their interventions.5 Demoralisation is increasingly identified as an important clinical syndrome among patients with advanced illness, and, as discussed by Kissane,7 such demoralisation among doctors may affect their interactions with patients. It may diminish their capacity to effectively assess and intervene in the patient's hopelessness, depression and demoralisation, and family distress that are associated with the wish to die.8 The article by Haverkate and colleagues in this issue of the Journal9 raises a number of the problems in this field. The study reports a wide variety of emotional responses in doctors to the common interventions they use in caring for dying patients (eg, the perceived "life-shortening effects" of common treatments to alleviate pain and other symptoms). It describes the discomfort and relief reported by the clinicians involved, and concludes that their actions in deliberately hastening death may reassure the doctors of their ability to assist a dying patient and to help the patient die in the way he or she wished, even though, in some cases, the patient had not requested hastened death. Indeed, deliberate intervention to end life without request from the patient is reported to have occurred in 74 of the 558 cases (13.3%), yet this receives little critical discussion. The report does not describe the type of care patients received. This is an important issue if doctors felt euthanasia was a means of improving "the quality of dying". In addition, we know nothing of the patients' views, nor how they were expressed or interpreted. Finally, it is also noteworthy that the "discomfort" of some doctors varied according to other characteristics of the patient. That doctors experienced less discomfort in ending the life of a female patient, or a patient whom they believed was closer to death, than those who are male, younger or believed to have a better prognosis should also raise serious concerns about the processes that might underlie these decisions. How do we respond to such findings, and what meaning do we attach to them? The conclusion reached by Haverkate et al, that by providing euthanasia a doctor is left with the satisfaction of having contributed to the quality of the dying process, is symptomatic of the depth of the problem facing medicine in the care of the dying. The provision of death comes to be viewed as one of a doctor's therapeutic tools. Death becomes a commodity within the therapeutic relationship, even a "right", and the deliberate ending of a life becomes a medical treatment. Research such as that of Haverkate et al also raises questions about the impact of broader societal values on the doctors' actions, motivations and perceptions of their role. What social pressures come to bear on doctors' actions and beliefs about what they do, including the limitations in health resources? How readily do the behaviours and views of doctors accommodate to, reflect, or even shape these prevailing forces (such as views on acceptable care of a dying patient, and broader attitudes towards the dying and the aged)? Does the interest in, or even "comfort" in, euthanasia tell us more than we can comfortably acknowledge about doctors' (and the broader society's) views on the sick and dying? Other questions are raised. To what extent is the issue of assisted suicide or euthanasia symptomatic of the failure to equip doctors with better skills in the care of the dying patient? The reactions of doctors tell us less about the appropriateness of euthanasia, or the needs of doctors following a death by euthanasia, than they do about how troubled and problematic the medical responses to a dying patient can be — a "symptom" of the problem modern medicine has with dying rather than the solution.10 The report by Haverkate and colleagues provokes a question that has long been asked in this field: When we talk of relief of suffering, whose suffering are we referring to?11 Is it also the suffering of the doctor, pained by proximity to death and a sense of helplessness and demoralisation when feeling ill-equipped to respond to the needs of the patient and his or her family? A pressing task is presented by the research of Haverkate and colleagues — to address the limitations of medical training; to provide better access to supervision and support for doctors and other health professionals while they are engaged in the care of seriously ill and dying patients; to develop better systems of care that identify and respond to patients' psychological and social needs alongside the skilled care of physical illness; and to improve patients' access to such care. The provision of professional support and supervision before assisted suicide or euthanasia occurs aims to better identify the needs around the dying patient, the interventions required, and aims to prevent assisted suicide. Guidelines to help doctors have been published. These include those developed by the National Health and Medical Research Council for the psychosocial care of patients with breast cancer,12 guidelines for improving communication skills in end-of-life care,13 and recommended approaches to a request for euthanasia or assisted suicide.14 Acquiring such skills can improve the care by clinicians, and provide much-needed alternatives to the promotion of euthanasia or assisted suicide. Brian J Kelly Associate Professor, and Director Consultation-Liaison Psychiatry, Department of Psychiatry, School of Medicine University of Queensland, and Division of Mental Health Princess Alexandra Hospital, Brisbane, QLD Christakis NA. Death foretold: prophecy and prognosis in medical care. Chicago: University of Chicago Press, 1999. Ramirez AJ, Graham J, Richards MA, et al. Burnout and psychiatric disorder among cancer clinicians. Br J Cancer 1995; 71: 1263-1269. Billings JA, Block S. Palliative care in undergraduate medical education: status report and future directions. JAMA 1997; 278: 733-738. Hendin H. Seduced by death. New York: Norton, 1998. Miles SH. Physicians and their patients' suicides. JAMA 1994, 271, 1786-1788. Pellegrino ED. Compassion needs reason too. JAMA 1993; 270: 874-875. Kissane D. Demoralisation - its impact on informed consent and medical care. Med J Aust 2001; 175: 537-539. Chochinov HM, Wilson KG. The euthanasia debate: attitudes, practices and psychiatric considerations. Can J Psychiatry 1995; 40: 593-602. Haverkate I, van der Heide A, Onwuteaka-Philipsen BD, et al. The emotional impact on physicians of hastening the death of a patient. Med J Aust 2001; 175: 519-522. Annas GJ. Physician-assisted suicide: Michigan's temporary solution. N Engl J Med 1993; 328: 1573-1576. Goodwin JS. Mercy killing: mercy for whom? JAMA 1991; 265: 326. National Health and Medical Research Council. Psychosocial clinical practice guidelines: information, support and counselling for women with breast cancer. Canberra: NHMRC, 2000. von Gunten CF, Ferris FD, Emanuel LL. Ensuring competency in end-of-life care: communication and relational skills. JAMA 2000; 284: 3051-3057. Emanuel LL. Facing requests for physician-assisted suicide: toward a practical and principled clinical skill set. JAMA 1998; 280: 643-647. Make a comment

Brian J Kelly

Death and the Physician When our patients die MJA 2001; 175: 524-525 It was a long time ago now. I had been a doctor but three days. Mrs Gilmore (not her real name) had been brought to the emergency department with chest pain. As I took her history, her voice was soft, but her eyes were frightened. When I had finished, I clasped her aged hand comfortingly. "Don't worry", I said quietly, "It'll be alright". At that moment the light left her eyes. The monitor called the arrest, and white coats descended upon her like carrion birds to beat upon her lifeless chest. When it was all over, when it was all written up, I needed a moment and ambled, dazed, to the tea-room to sit. I am still upset when a patient dies. We all are. Doctors tend to see healing the sick as their raison d'être, and when a patient dies it is hard to escape the notion that we have somehow failed. Even those who claim they are comfortable with a patient's death often wear such proud comfort emblazoned on their sleeves that we are prone to doubt they truly know their minds. How much more upsetting is it when we feel we have played a part in the death? In this issue of the Journal, Haverkate and colleagues report on a survey that, among other things, addresses that question.1 For the survey, Dutch doctors were questioned on their emotional reactions to their most recent cases of euthanasia, assisted suicide, ending a patient's life without explicit request or the use of medications in doses that the respondents believed were large enough to have hastened a patient's death. Physicians' responses were recorded as either "of comfort" (satisfied, relieved, etc) or "of discomfort" (upset, burdened, etc). While 75% of doctors who reported on a euthanasia case felt emotional discomfort, this figure dropped to 58% for cases of assisted suicide. In cases where an end-of-life- hastening medication had been administered with the primary aim of symptom relief, a mere 18% reported discomfort. What are we to make of these figures and what are their implications for Australian doctors? I would argue that, in general, the more a doctor perceives herself or himself as an active participant in a patient's death, the more upsetting she or he will find the death. While previous generations of physicians would only rarely have seen themselves as active agents in the dying process, this perception must now be increasingly common. Our increasing ability to send death away when it calls (or at least to detain it at the door) has also meant that we are, more than ever before, in a position to judge that further efforts are futile and that we should stand back and let death in. This feeling of being an active agent is only magnified when we take active steps in the process and help our patients to die with euthanasia or assisted suicide. In this context, the relatively low rate of negative emotional response when life was ended without explicit request (34%) is worthy of special consideration. Surely here the doctor is as active a participant as she or he is in euthanasia, but now without a specific request from the patient? Why is she or he then less often upset? The important factor in an emotional reaction is, however, not what happened but how it was perceived. I suspect that emotional discomfort is low in these cases because doctors generally believe that death is already upon the patient and that they are doing little more than to ease its way. Much as in the cases where medication is used primarily for pain relief, the physician does not feel a strong sense of agency in the patient's death. The finding by Haverkate et al that end-of-life decisions thought to shorten life by more than one month were much more troubling than those judged to shorten life by a lesser time seems also to support this the-more-agency-the-more-upsetting model. Doctors must deal with their role in their patients' deaths in Australia as much as in the Netherlands.2 While Dutch doctors can, and do, openly seek support for their emotional reactions to the death of patients, such support is likely much harder won in Australia. It is not only that the current legal situation means that Australian doctors who help their patients to die place themselves at risk of harsh penalty if discovered. It is also, and perhaps more importantly, that there is a culture within the Australian medical community that a good doctor simply copes and gets on with it. This culture deserves scrutiny and perhaps change. This issue of the Journal is a good place to start. I did not actively contribute to Mrs Gilmore's death, but as I sat in the tea-room I must have wondered if I could have done more. After 20 minutes, I was back in the fray. Christopher J Ryan Consultation-Liaison Psychiatrist Department of Psychiatry Westmead Hospital, Westmead, NSW Haverkate I, van der Heide A, Onwuteaka-Philipsen BD, et al. The emotional impact on physicians of hastening the death of a patient. Med J Aust 2001; 175: 519-522. Kuhse H, Singer P, Baume P, et al. End of life decisions in Australian medical practice. Med J Aust 1997; 166: 191-196. Make a comment

Christopher J Ryan

Cannabis has been advocated as a treatment for nausea, vomiting, wasting, pain and muscle spasm in cancer, HIV/AIDS, and neurological disorders. Such uses are prohibited by law; cannabinoid drugs are not registered for medical use in Australia and a smoked plant product is unlikely to be registered. A New South Wales Working Party has recommended granting exemption from prosecution to patients who are medically certified to have specified medical conditions. This proposal deserves to be considered by other State and Territory governments. Wayne D Hall, Louisa J Degenhardt and David Currow MJA 2001; 175: 39-40 In August 1999, the New South Wales Premier convened a Working Party on the Use of Cannabis for Medical Purposes1 to advise on whether cannabis and cannabinoid drugs had any medical uses and, if so, to suggest how these substances could be made available for medical use without decriminalising cannabis for non-medical use. The Working Party's report was tabled in Parliament on 1 November 2000. Its recommendations were endorsed in principle by the Premier and are currently being considered by the NSW government. We believe that they deserve wider consideration. The Working Party reviewed the scientific evidence on the safety and efficacy of the medical uses of the crude cannabis plant (which is usually smoked) and of cannabinoid drugs (pharmaceutically pure substances found in the cannabis plant, such as tetrahydrocannabinol [THC], or synthetic drugs that act on the same receptors in the brain as THC).2 It agreed with the United States Institute of Medicine2 and the UK House of Lords Standing Committee on Science and Technology3 that THC can be useful in treating nausea, vomiting and appetite loss in patients with HIV and in cancer patients undergoing chemotherapy.1 It noted the suggestive evidence from animal studies and clinical case series that THC may relieve painful muscle spasms in neurological disorders and chronic pain that has not responded to conventional analgesics.2 It recommended further research on the therapeutic use of cannabis and cannabinoid drugs in these conditions. These recommendations do not address the needs of those currently using cannabis for medical purposes, as THC is not registered for medical use in Australia. THC is registered in the US, and a synthetic cannabinoid, nabilone, is registered in the United Kingdom to treat nausea caused by cancer chemotherapy and HIV-related wasting. These drugs could be registered in Australia if a pharmaceutical company applied. No company has done so to date. Smoked cannabis can not be medically prescribed in Australia, as it does not satisfy the requirements for registration as a "therapeutic good" under the Therapeutic Goods Act 1989 (Cwth). Smoking is an unsafe and unreliable way to deliver a drug that may be used daily to treat a chronic illness.1 The risks are much lower if cannabis is smoked for a limited time (eg, to treat nausea during a course of cancer chemotherapy, or to intermittently stimulate appetite in patients with HIV/AIDS or terminal cancer).1 The best chance for establishing the medical use of cannabinoids lies in the development, testing and registration of new synthetic cannabinoid drugs. This is likely to take considerable time.2 The next-best option is to find ways of administering THC that are more efficient than the oral route and do not involve smoking a crude cannabis plant product.2 However, existing technologies (eg, transpulmonary delivery systems used for opioid drugs) are not readily adapted for delivering THC, which is not water soluble.4 In the meantime, under existing NSW law (and in other States/Territories except South Australia, the Australian Capital Territory and the Northern Territory), patients who smoke cannabis for medical reasons face criminal prosecution if detected by the police. The Working Party's view was that the law should not compound the predicament of seriously ill patients. Accordingly, it recommended that a limited exemption from criminal prosecution should be given to specific classes of patients who wished to use cannabis for medical purposes. The exemption would be an interim measure until pharmaceutical cannabinoids were registered, and the effects of this exemption would be evaluated after a two-year trial period. The exemption would be limited to patients who had been certified by an approved medical practitioner to have HIV-related or cancer-related wasting, nausea caused by cancer chemotherapy, muscle spasm in neurological disorders or spinal cord injury, or pain unrelieved by conventional analgesics. Certification would have to be obtained before medical cannabis use. This would allow the practitioner to counsel the patient about alternative treatments and the risks of smoking cannabis, and to review their health regularly. The patient would have to renew the certificate after six months. To allow patients to avoid resorting to the black market, the Working Party recommended that these patients be allowed to grow a small number of cannabis plants for their own use. In the case of seriously ill and debilitated patients, a carer would be allowed to grow the plants on behalf of the certified patient. How many patients are likely to use such provisions? According to estimates derived from data supplied by the New South Wales Cancer Council, around 12 000 patients suffer from nausea during cancer chemotherapy or cancer-related wasting in any year.5 Another 2000 suffer from HIV-related wasting and neurological disorders and 4500 from chronic pain unrelieved by conventional treatments in New South Wales in any year. The total estimate of about 19 000 (Box) is likely to be an upper limit on the number of medical cannabis users, as the symptoms of many of these patients will be managed with existing treatments and others may not want to use cannabis.5 The size of the current cannabis black market makes it unlikely that cannabis grown for medical purposes will be diverted to the black market. The number of people who would be permitted under these recommendations to use cannabis for medical purposes is less than 2.5% of the 820 000 New South Wales adults estimated to have used cannabis for non-medical purposes in 1998.7 It is also unlikely that allowing exemptions for medical uses of cannabis will be seen as condoning the non-medical use of cannabis. In the US, survey evidence (and passage of citizen-initiated referenda)2 show majority support for medical uses of cannabis, yet there is strong support for the continued prohibition of non-medical cannabis use.8 We believe that the Working Party's recommendations balance the needs of patients with community concern about non-medical cannabis use in a way that deserves to be considered by all State and Territory governments. Ultimately, patients with certain illnesses will be able to use pharmaceutical cannabinoids or other drugs, but, in the meantime, the Working Party's recommendations will allow these patients to use cannabis for medical reasons without changing the legal prohibition on non-medical use of cannabis, and without expanding the black market for cannabis products. References Report of the Working Party on the Use of Cannabis for Medical Purposes. Volume I: Executive summary; Volume II: Main report. Sydney: NSW Government, 2000. Available at <http://www.druginfo.nsw.gov.au/druginfo/reports/medical_cannabis.html>. Institute of Medicine (United States). Marijuana and medicine: assessing the science base. Washington: National Academy Press, 1999. House of Lords Select Committee on Science and Technology (United Kingdom). Cannabis: the scientific and medical evidence. London: The Stationery Office, 1998. Mather L. Delivery systems for medical cannabis. Appendix D in the Report of the Working Party on the Use of Cannabis for Medical Purposes. Volume II: Main report. Sydney: NSW Government, 2000. Available at <http://www.druginfo.nsw.gov.au/druginfo/reports/medical_cannabis.html>. Hall W, Degenhardt L. Estimated number of potential medical users of cannabis. Sydney: National Drug and Alcohol Research Centre, 2000. Available at <http://www.med.unsw.edu.au/ndarc/>. Blyth FM, March LM, Brnabic AJM, et al. Chronic pain in Australia: a prevalence study. Pain 2001; 89: 127-134. National Drug Strategy household survey: first results. Canberra: Australian Institute of Health and Welfare, 1999. (Drug Statistics Series; AIHW catalogue no. PHE 15.) Johnston L, O'Malley P, Bachman J. National survey results on drug use from the monitoring the future study, 1975-1999. Rockville, MD: National Institute on Drug Abuse, 2000. Authors' details The National Drug and Alcohol Research Centre, University of New South Wales, Sydney, NSW. Wayne D Hall, PhD, Executive Director, and Chair, Working Party on the Use of Cannabis for Medical Purposes; Louisa J Degenhardt, BA(Hons), Research Assistant, and Research Officer, Working Party on the Use of Cannabis for Medical Purposes. Flinders University, Adelaide, SA. David Currow, MPH, FRACP, Professor of Palliative Care, and Member, Working Party on the Use of Cannabis for Medical Purposes. Reprints: Dr W D Hall, The National Drug and Alcohol Research Centre, University of New South Wales, Sydney, NSW 2052. w.hallATunsw.edu.au Make a comment Estimated number of potential medical users of cannabis It is difficult to estimate the potential number of people in New South Wales who suffer from conditions that might be alleviated by cannabis or cannibinoids for several reasons: we are uncertain about the prevalence of these diseases; we do not know what proportion of these patients have the symptoms which cannabis has been claimed to relieve; and we do not know the proportion of these patients whose symptoms are unrelieved by existing treatments. Cancer-related wasting: In 1997, 11 594 people died of cancer in NSW (NSW Central Cancer Registry, 2000). If we assume that almost all of these persons suffered from cancer-related wasting, then about 11 000 people might have benefited from cannabis use to improve appetite. This does not take into account people who experienced cancer-related wasting but who did not die. Severe nausea from chemotherapy: Cancers vary in type, severity of symptoms and therapeutic regimen, so it is difficult to provide an accurate estimate of the number who may receive cancer chemotherapy that causes severe nausea and vomiting. Platinum-based chemotherapy is the most emetogenic form of chemotherapy, and is used in the treatment of ovarian cancer, testicular cancer, soft tissue sarcoma, 20% of head and neck cancers, 33% of distal oesophagus cancers, and about 10% of non-small-cell lung cancers. Based on 1997 estimates of these cancers, about 1000 people might have experienced severe nausea from platinum-based chemotherapy. HIV-related wasting: According to the Australian Research Centre in Sex, Health and Society at La Trobe University (Vic.), there were 2289 people with clinical AIDS in 1999, and 55% of them lived in NSW. A survey of 924 AIDS patients conducted by La Trobe University suggested that a third of people with HIV/AIDS experience weight loss. If these figures are applied to the estimate in NSW, then there would be around 400 people with HIV/AIDS in NSW in any one year who would be potential medical consumers of cannabis or cannabinoids. Muscle spasticity: According to the Multiple Sclerosis Society of Australia, patients with the disease known to the society represent 0.3% of the Australian adult population: about 11 000 people in NSW. To take account of patients not known to the society and to include people with less common neurological disorders whose symptoms may be alleviated by cannabis or cannabinoids (eg, patients with spinal cord injuries), we double this estimate, to 20 000. There are no Australian data on the prevalence of muscle spasticity among these patients. If we assume 10% prevalence, then about 2000 people with neurological conditions might benefit from cannabis or cannabinoids. Chronic pain: In any year, 11% of males and 13.5% of females have chronic pain that interferes with daily activities.6 Of these, 2.9% will have seen a pain specialist and 20% of them will have incomplete pain relief (Dr F M Blyth, Pain Management and Reseach Centre, University of Sydney, personal communication). In NSW, this amounts to 4500 people. Therefore, about 18 900 people in any year might benefit from the medical use of cannabis or cannabinoids. To this should be added the unknown number of persons with acute and chronic pain that is unrelieved by existing treatment. Back to text

Wayne D Hall · Louisa J Degenhardt · David Currow

Viewpoint Physician-assisted suicide in Oregon: why so few occurrences? Howard Wineberg MJA 2001; 174: 353-354 In the first three years that physician-assisted suicide (PAS) has been legal in Oregon, about two persons per month have taken medication to end their life. Most physicians are unwilling to prescribe the lethal medication. Because many terminally ill people are confined to their bed or home, the difficulty of finding a willing physician may have resulted in many abandoning the idea of using PAS. People living a long way from a large urban centre may be severely disadvantaged in their ability to obtain medication to end their lives. Legal requirements - Oregon - Using PAS - Not using PAS - Conclusion - References - Authors' details - - More articles on Ethics Physician-assisted suicide (PAS) has been legal in the state of Oregon, USA, for more than three years. The Oregon Health Division, the agency responsible for monitoring Oregon's Death with Dignity Act, has produced official reports documenting the number and characteristics of Oregonians who have used the provisions in the law to take medication to end their lives in the years 1998-2000.1-3 Only 70 people legally took medication to hasten their death during this period — in this article I examine some of the reasons why. Legal requirements Under Oregon's law,4 only Oregon residents who are aged 18 or over and have a terminal illness with a life expectancy of less than six months are eligible to request a prescription for medication to end their life. Patients must self-administer (swallow) the medication — euthanasia (involving a physician's active intervention) is not allowed. The physician's prognosis for the patient must be confirmed by a consulting physician and both physicians must determine that the patient is capable of making his or her own decision and does not have a mental health condition that impairs his or her judgement. The patient must make two oral and one written requests for the medication, and at least 15 days must elapse between the first and the final request. Physicians are not obligated to participate in PAS. Population and geography of Oregon Oregon occupies 96 000 square miles and borders the Pacific Ocean. Of the 3.3 million residents of Oregon, 1.4 million live in the Portland Metropolitan Area.5 Many of Oregon's counties are sparsely populated — half of the counties are east of the Cascade Range, yet this area contains only one city of at least 20 000 people.5 Many people living in eastern Oregon are a 5-7-hour drive from Portland or another metropolitan area. The number of people using PAS In the first three years of operation of Oregon's law (1998-2000), 70 people legally took medication to end their lives. Although the number increased from 16 in year one to 27 in years two and three, only about two people per month, on average, are using PAS,1 and only 0.07% of Oregonians die of PAS in a year.6 By comparison, around 545 people per month die of cancer in Oregon.7While the United States and the Netherlands are not directly comparable to one another, it is noteworthy that in the Netherlands about 2.4% of all deaths are from euthanasia and 0.3% from PAS.8 In Oregon, approximately 10% of all requests for PAS result in the person taking the medication to end their life, whereas in the Netherlands about a third of the requests result in death by euthanasia or PAS.9,10 In Australia, despite threats that physicians participating in euthanasia would be legally culpable, in the nine months that euthanasia was legal in the Northern Territory (from July 1996 to March 1997) four people died by this means,11 representing 0.7% of all deaths in the Northern Territory during that time.12 I must emphasise that my focus is on legal PAS in Oregon. Illegal PAS and euthanasia probably still occur, although their extent is unknown. Reasons for terminally ill people not using PAS One reason why so few people may have taken medication to end their lives is that an individual must wait at least 15 days after making the initial request to receive medication. This makes it difficult for people to use PAS on a whim. Terminally ill individuals have mentioned that the process one needs to go through to finally receive the medication can be quite burdensome (because of the waiting period, the need to get two physicians to confirm that the patient has a life expectancy of less than six months, and the requirement that the patient must get two people to witness the written request for the lethal medication).9 Approximately 30% of patients requesting a prescription may die before completing the requirements of the law.9Recent improvements in palliative care in Oregon13 may have allowed some people to die in relative comfort without having to hasten their death. Oregon has one of the highest rates of hospice admission and morphine usage per capita in the United States.14 It is estimated that about 45% of the patients for whom a substantive intervention is made will change their minds about wanting a prescription for a lethal medication.9 Just knowing that they can receive medication to end their life, if desired, is comfort enough for some individuals15 — the Oregon Health Division statistics show that 19 people who eventually died of their underlying illness had had the medication but not used it.1 Some people may be unable to swallow the medication themselves and thus can not use PAS.4 Others may fear that even if they swallow all the medication it may not kill them,16 and thus they do not attempt PAS. The above factors notwithstanding, I believe the most important reason for the limited use of PAS is that this service is not readily accessible to many Oregonians. Approximately 60% of the patients had to go to more than one physician before finding one who would write the prescription.1 The Oregon Health Division reported that only a fifth of physicians of control patients dying of similar terminal illnesses would have prescribed a lethal medication if asked,2 and, in a study of Oregon physicians, Ganzini et al9 found that only 16% of those asked actually wrote a prescription. The Veterans Affairs system, the Indian Health Services system and a major Catholic healthcare system do not allow PAS in their facilities.3 Some physicians willing to prescribe the medication have had difficulty finding a second physician to confirm the prognosis or a pharmacist willing to fill the prescription.9 Some physicians fear being penalised if they prescribe a lethal medication. In November 1997 Thomas Constantine, head of the US Drug Enforcement Administration, stated that if physicians prescribed a lethal medication to end a person's life it would be a violation of federal law.17 Then, in June 1998, United States Attorney General Janet Reno ruled that physicians in Oregon could legally write such a prescription.18 (This may be one reason why the number of people using PAS was higher in 1999 than in 1998.) However, the US Congress is now considering a bill that would make it illegal for physicians to prescribe a controlled substance to end a person's life. Consequently, some physicians may consider it risky to write such a prescription, particularly as to do so remains against professional guidelines.9,19 People residing in small cities, particularly those in eastern Oregon who are 75-400 miles from Portland or another metropolitan area, may be severely disadvantaged in getting access to PAS. Ganzini et al9 found that it was extremely rare for physicians practising in areas of fewer than 25 000 people (94% of Oregon's cities have fewer than 25 000 people5) to prescribe the medication. Physicians who do not have a large population base from which to draw patients may fear that if they participate in assisted suicide they could be the target of demonstrations outside their homes and offices, similar to those directed at physicians who perform abortions.20 Two-thirds of the physicians writing a lethal prescription expressed concern about reporting the fact to the Oregon Health Division.9 Because many terminally ill people are confined to their bed or home, the difficulty of finding a physician to prescribe the medication may result in many people abandoning the idea of using PAS as an end-of-life option. Conclusion Although PAS is legal for terminally ill people in Oregon, relatively few appear to have used medication to end their lives. The process of finding a physician willing to write the prescription, fulfilling all the legal requirements and finally receiving the medication can be time consuming, and perseverence is required. Once diagnosed with a serious or terminal illness, patients should probably start looking for a physician who is willing to prescribe a lethal medication if necessary. Without adequate planning for the possibility of using PAS, some terminally ill Oregonians may be unable to take medication to hasten their death. References Oregon's Death with Dignity Act: three years of legalized physician-assisted suicide. Portland, OR: Oregon Health Division, 22 February 2001. Sullivan AD, Hedberg K, Fleming DW. Legalized physician-assisted suicide in Oregon - the second year's experience. N Engl J Med 2000; 342: 598-604. Chin AE, Hedberg K, Higginson GK, Fleming DW. Oregon's Death with Dignity Act: the first year's experience. Portland, OR: Oregon Health Division, 18 February 1999. Haley K, Lee M, editors. The Oregon Death With Dignity Act - a guidebook for health care providers. Portland, OR: Oregon Health Sciences University, 1998. Wineberg H. Population estimates for Oregon: July 1, 1997. Portland, OR: Center for Population Research and Census, 1998. Center for Health Statistics. Oregon vital statistics annual report, 1997. Volume 2: Mortality. Portland, OR: Oregon Health Division, 2000. Center for Health Statistics. Oregon vital statistics county data 1998. Portland: Oregon Health Division, 2000. Van der Maas PJ, van der Wal G, Haverkate I, et al. Euthanasia, physician-assisted suicide, and other medical practices involving the end of life in the Netherlands, 1990-1995. N Engl J Med 1996; 335: 1699-1705. Ganzini L, Nelson HD, Schmidt TA, et al. Physicians' experiences with the Oregon Death with Dignity Act. N Engl J Med 2000; 342: 557-563. Van der Maas PJ, Van Delden JJM, Pijnenborg L, Looman CW. Euthanasia and other medical decisions concerning the end of life. Lancet 1991; 338: 669-674. Kissane DW, Street A, Nitschke P. Seven deaths in Darwin: case studies under the rights of the Terminally Ill Act, Northern Territory, Australia. Lancet 1998; 352: 1097-1102. Australian Bureau of Statistics. Deaths, Australia. Canberra: ABS, 1996, 1997. (Catalogue No. 3302.0). <http://www.abs.gov.au>. Lee MA, Tolle SW. Oregon's assisted suicide vote: the silver lining. Ann Intern Med 1996; 124: 267-269. Tolle SW. Care of the dying: clinical and financial lessons from the Oregon experience. Ann Intern Med 1998; 128: 567-568. Muskin PR. The request to die: role for a psychodynamic perspective on physician-assisted suicide. JAMA 1998; 279: 323-328. Groenewoud JH, Van der Heide A, Onwuteaka-Philipsen BD, et al. Clinical problems with the performance of euthanasia and physician-assisted suicide in the Netherlands. N Engl J Med 2000; 342: 551-556. Hill GK, Barnett J. Push is on to assess DEA clout on suicide. Oregonian November 13, 1997: D1, D5. Hogan D. Bills blocking assisted suicide continue to move. Oregonian July 25, 1998: B1, B3. Lee MA, Ganzini L, Brummel-Smith K. When patients ask about assisted suicide: a viewpoint from Oregon. West J Med 1996; 165: 205-208. Lee MA, Tolle SW. Oregon plans to legalise suicide assisted by a doctor: how much more open will the practice become? BMJ 1995; 310: 613-615. Authors' details Portland, Oregon, USA. Howard Wineberg, PhD, Private consultant. Reprints will not be available from the author. Correspondence: Dr H Wineberg, 1513 SE Oak Street, Portland, Oregon, USA 97214-1454. wineberghAThotmail.com Make a comment

Howard Wineberg

Medicine and the Community Improving services to bereaved relatives in the emergency department: making healthcare more human Aled G Williams, Debra L O'Brien, Kylie J Laughton and George A Jelinek MJA 2000; 173: 480-483 For editorial comment, see Kissane Abstract - What do relatives want? - The best way to break bad news - The Sir Charles Gairdner Hospital ED bereavement protocol - Conclusions - References - Authors' details - - More articles on Emergency medicine Abstract Death and bereavement are often poorly dealt with in emergency departments. Guidelines exist for optimal care of bereaved relatives. Establishing a limited bereavement program in a busy emergency department is quite feasible. Bereaved relatives appreciate a more "human" approach from hospital staff. Ultimately hospital staff also benefit from confronting issues surrounding death in the emergency department. Sudden death in the hospital emergency department (ED) is highly emotionally charged for relatives and staff. It is difficult to deal sensitively with death in a busy ED. Doctors find dealing with relatives difficult because of poor training in communication, fear of being blamed, a perceived "failure" in their skills, fear of expressing emotion, and their own fears about death.1-3 Death may be glossed over as we move to the next patient in the ever-increasing queue. Talking to the family may be seen as a chore and a waste of precious time on a busy shift. In not confronting these issues, however, we risk increasing job dissatisfaction and burnout.4 We also diminish the "human" side of our role as doctors. For relatives, the death of a loved one is difficult enough to cope with when it is expected. Deaths in an ED are often sudden and unexpected; the environment is confusing and unfamiliar; there may be difficulty getting information; and medical and nursing staff are usually strangers. This occurs in an atmosphere of high stress in which access to the patient may be restricted. All of these factors increase the likelihood that relatives will experience an abnormal grief reaction, with associated threats to physical and emotional wellbeing.5-7 Here we review the current literature on care of unexpectedly bereaved relatives and outline the changes we made in improving this service in our hospital's ED. What do relatives want? Relatives feel helpless and uninformed, and their experience is often negative. What they want during this very stressful time has been documented: to receive prompt attention from staff on arrival and frequent updates on their loved one's condition;6,7 to be with the patient before death, including during resuscitation;8 to know that the patient received prompt and appropriate treatment from prehospital and hospital staff;8 to be informed of the death in a compassionate and unhurried manner;7,8 to be assured that the patient's belongings will be properly handled;6,7 to be told what to do next (eg, how to contact an undertaker; when to go home);7 and to have the opportunity for follow-up with the hospital to answer unresolved questions.6,7 The best way to break bad news Most medical staff find breaking bad news to relatives stressful and draining, but we must not underestimate the importance of our interactions. The family will review the events of the day, including attitudes and responses of staff, again and again for months. Relatives' perceptions can profoundly affect their grief response, positively or negatively.5,7,9 Every family is different and each bereavement experience is unique, so some degree of flexibility is essential. There are, however, well established guidelines (for a summary, see Box). Initial contact with the family. Initial contact with relatives is often made over the phone. A senior doctor or nurse should first identify himself or herself and then the relative answering the phone. In general, the relative should not be told over the phone that the patient has died (if this is the case) -- the caller should simply outline events, say that the patient is very ill and ask the relative to come as soon as possible.5,7,9 The caller should try to ensure that there is somebody with the relative or able to drive them to the hospital. If informing relatives by phone is unavoidable10-12 (eg, if they live a long distance away), the caller should make greater efforts to ensure that the relative receiving the call is not left alone (eg, by asking if there is anyone who can be with the person, or offering to call a friend or relative).5 A member of staff should meet the relatives on arrival, confirm their identity and show them to a private area.7,12,13This should be a comfortably furnished room with access to a telephone. If the patient is undergoing resuscitation, a senior member of staff should explain this early and prepare the relatives for the possibility of death.6 A member of staff should offer to contact a priest or other spiritual counsellor. The family should, if possible, be given the opportunity to witness the resuscitation -- many relatives feel strongly that they should be at the patient's side, or may simply want to confirm that everything possible is being done.6,10 Relatives witnessing the resuscitation should be accompanied by a staff member to explain what is happening and answer questions. Keeping the family informed. A member of staff should stay with the family, giving them frequent updates on the progress of resuscitation.5,7,8 Informing the family of the death. This should be done by the doctor responsible for the patient.5,7 The doctor's presence implies that everything possible was done to save the patient's life. Introducing oneself and sitting down indicates a willingness to spend as much time as the family needs. Next it is important to identify who is in the room and what their relationship is to the deceased. (Friends should generally be asked to wait outside.5,10) The patient should be referred to by name as the doctor establishes what the family already knows, then fills in the details, beginning with what happened to the patient before arrival at the hospital.5,7,10 It is quite appropriate to inform relatives of details, such as the fact that the patient was "unconscious and didn't feel any pain".10,14 When informing relatives of the death, use plain English ("is dead" or "died") rather than euphemisms like "passed away", which some people misinterpret.7,12,13 The doctor's next responsibility is to facilitate grieving.5,7 The initial reaction will probably be shock. The doctor should allow some time for this to ease, but then the family should be encouraged to express feelings and ask questions. It may be best to just sit quietly for a while to share their grief.7 Sometimes it is appropriate to use touch, such as placing a hand on the arm to comfort a relative.10,14 After the initial shock, one of three emotions usually predominates:5 Denial -- this initial defence mechanism should be recognised and tolerated. It can allow time to adjust to the reality of death; Anger -- this may be directed at hospital staff. Usually, once expressed, the anger will diminish; Guilt -- this represents an inward expression of anger. Relatives may blame themselves. A simple statement from the doctor, exonerating the family, can provide much relief in the days and weeks to follow. Viewing the deceased. Most families wish to view or hold the deceased and this can facilitate the grieving process.5,7,10,13 If they do not wish to, this should be accepted.7,13 Medical or nursing staff should spend time preparing the family, especially if the body has been mutilated or if medical apparatus has been left in place for postmortem examination. Staff should remain discreetly to answer questions before withdrawing.7,10,13 Identifying "at risk" family members. Some family members are at greater risk of severe grief reaction, or even suicide, than others. Identifying these relatives can be difficult, but severe grief reactions are more likely to occur in cases where:7,10 the death was sudden or violent (eg, due to suicide or homicide); the person who died was a child; the person who died was a spouse or partner (especially if the relationship involved a high level of conflict or over-dependence); the relative feels he or she may have contributed to the death; the relative is particularly vulnerable because of past psychiatric illness or lack of a support network. Relatives at high risk of experiencing a severe grief reaction should be encouraged to have a friend or relative stay for 1-2 days. Relatives openly expressing suicidal intent, or even psychotic reactions, may require urgent psychiatric intervention. Concluding process. The family should be informed if a postmortem examination is needed. In Australia, coroner's department counselling services can be of assistance. The services of a funeral director need to be engaged and the deceased's personal property handed over to relatives. As relatives may forget much of what is said, it is useful to provide a brochure containing information about the grieving process, notes on practical matters and a list of useful phone numbers.11 Hospital staff should answer final questions and inform the family doctor. Many families need to be given "permission" to go home.7,11 Follow-up. Many relatives appreciate contact with the hospital after they leave.7,10,11 They may need further information to help resolve important issues, and they like to feel that the hospital actually cares. The Sir Charles Gairdner Hospital ED bereavement protocol The protocol Our hospital's bereavement protocol developed from a discussion of "death and dying" at one of our registrar teaching sessions, which made us aware that we could be doing much more to help bereaved relatives. We decided to set up a bereavement program using best practice guidelines.7,15,16We aimed to provide a service that was relatively simple and easily absorbed into existing staff workload, of benefit to relatives and not intimidating to staff. It was also important to make the program as unobtrusive as possible for relatives and to provide some continuity with staff who were present at the time of the person's death (there is some evidence of an adverse effect on grieving if these factors are not taken into account17). The main features of our program were: an education package for medical and nursing staff; intervention of a social worker at the time of death or by written referral out of hours; an information brochure for relatives, containing notes on the grieving process and practical issues, and contact details for useful agencies, including the name and number of the ED social worker; timely notification of the family's general practitioner by phone or fax, immediately or by the next working day; a sympathy card sent to the closest relative, handwritten and signed by the doctor and nurse most closely involved; a follow-up phone call by the social worker at one week to assess needs, and an offer for interview with the doctor involved; a further follow-up phone call at six weeks (relatives had been told that they would be contacted at this stage and were free to decline). The program was administered through the Social Work Department, which was responsible for keeping records of when calls were due and for coordination with medical staff. Practical issues to be dealt with included staff education (and overcoming staff resistance to the program), administration, and managing the extra workload for the social worker and medical and nursing staff. Because of the round-the-clock nature of the service, staff education and notification of the social worker sometimes created difficulties, especially at times of staff changeover. Initially, some staff saw the program as overly intrusive and "none of our business", and some vigorously opposed the idea of sending a sympathy card. These problems were largely overcome when positive reactions from families were fed back to staff, or when staff received direct thanks or cards. The initial problem of locating the appropriate medical and nursing staff to sign cards was solved by getting the head of department or the program's consultant to sign. There was minimal additional workload for medical and nursing staff, most of the extra time being that spent with grieving relatives, once or twice a month. Outcomes Of 37 deaths in the ED in the first seven months of the program, three were not referred to the social worker and were not followed up. All 34 remaining families wished to be enrolled in the program and received a call and a card during the first week after bereavement. Two relatives declined a follow-up phone call at six weeks, feeling they had enough support. Others were very happy with the call at six weeks -- one relative commented that she had looked forward to it for days, while another telephoned to rearrange the timing, as she would be away during the sixth week. Three families requested further interviews. We received much spontaneous positive feedback from relatives. Nearly all expressed gratitude verbally, and 10 relatives sent a written thank you as well. There was even an appreciative letter to the editor published in The West Australian newspaper, and one relative volunteered to join the hospital's Women's Auxiliary. Some comments from relatives were: "I thought that my mother had died alone, as I wasn't at her side. When I got the card and phone calls I realised that she had died among caring strangers, and that was a source of great comfort to me." "It was wonderful to get the card from Dr X. I'm glad my mother died at your hospital where everybody cares." "I've told all my friends that, when they die, your hospital is the place to do it."(!!) Tangible benefits of our program are hard to measure. As well as helping in the grieving process, for many people our program gave a positive image of the hospital as an institution which treated them as people with feelings and not just a "number". We hope this helps to make the face of emergency medical care in our community more "human". We believe it was also a beneficial process for staff. Apart from the formal education, which was positively received, many staff members were surprised by the appreciation shown by relatives. Some had assumed that relatives and patients wanted a formal and "professional" approach to bereavement and had sought to maintain "emotional distance". To their surprise, they found that spending time and commiserating with the family and showing a more "human" side were very well received. Conclusions Setting up a bereavement program is not difficult if staff are motivated. Provided the number of deaths per year in the ED is not excessive, the increased workload is small and easily absorbed. Although difficult to quantify, there are benefits to relatives, staff and the hospital. For us, the most important lesson is that relatives want to be treated with compassion by a caring professional. Being more "human" in our delivery of healthcare may just be beneficial for us as well. References Buckman R. Breaking bad news: why is it still so difficult? BMJ 1984; 288: 1597-1599. Schmidt TA, Tolle SW. Emergency physicians' responses to families following patient death. Ann Emerg Med 1990; 19: 125-128. Seravalli EP. The dying patient, the physician and the fear of death. N Engl J Med 1988; 319: 1728-1730. Honigman B, Armstrong J. Life and death. In: Rosen P, editor. Emergency medicine: concepts and clinical practice. 4th edition. St Louis, Missouri: Mosby, 1998: 197-212. Dubin WR, Sarnoff JR. Sudden unexpected death: intervention with the survivors. Ann Emerg Med 1986; 15: 54-57. Parrish GA, Holdren KS, Skiendzielewski JJ, et al. Emergency department experience with sudden death: a survey of survivors. Ann Emerg Med 1987; 16: 792-796. Walters DT, Tupin JP. Family grief in the emergency department. Emerg Med Clin North Am 1991; 9: 189-206. Fanslow J. Needs of grieving spouses in sudden death situations: a pilot study. J Emerg Nurs 1983; 9: 213-216. Soreff SM. Sudden death in the emergency department: a comprehensive approach for families, emergency medical technicians, and emergency department staff. Crit Care Med 1979; 7: 321-323. Edlich RF, Kubler-Ross E. On death and dying in the emergency department. J Emerg Med 1992; 10: 225-229. Von Bloch L. Breaking the bad news when sudden death occurs. Soc Work Health Care 1996; 23: 91-97. Adamowski K, Dickinson G, Weitzman B, et al. Sudden unexpected death in the emergency department: caring for the survivors. CMAJ 1993; 149: 1445-1451. Olsen JC, Buenefe ML, Falco WD. Death in the emergency department. Ann Emerg Med 1998; 31: 758-764. Hamilton GC. Sudden death in the ED: telling the living. Ann Emerg Med 1988; 17: 382. Yates DW, Ellison G, McGuiness S. Care of the suddenly bereaved. BMJ 1990; 301: 29-31. Coolican MB, Pearce T. After care bereavement program. Crit Care Nurs Clin North Am 1995; 7: 519-527. Williams WV, Polak PR. Follow up research in primary prevention: a model of adjustment in acute grief. J Clin Psychol 1979; 35: 35-45. Authors' details Emergency Department, Sir Charles Gairdner Hospital, Perth, WA. Aled G Williams, MB ChB, FACEM, Emergency Physician. Debra L O'Brien, MB BS, FACEM, Emergency Physician. Kylie J Laughton, BA, BSocWk, Emergency Department Social Worker. George A Jelinek, MD, FACEM, Professor and Chairman, Emergency Medicine, University of Western Australia. Reprints will not be available from the authors. Correspondence: Dr A G Williams, Emergency Department, Sir Charles Gairdner Hospital, Verdun Street, Nedlands, WA 6009. aled.williamsAThealth.wa.gov.au Make a comment Recommended actions for medical and nursing staff in dealing with grieving relatives Contacting family Request family's urgent attendance Do not inform of death over phone Arrival of family Show to private room with phone Give prompt update on patient's condition Offer spiritual or other counsellor During resuscitation Stay with family Give regular updates Allow relatives to be with patient After death Inform family in an unhurried manner Facilitate grieving Identify "at risk" relatives Allow deceased to be viewed Concluding process Attend to "formalities" (eg, coroner) Give brochure containing useful information and contact numbers Address final questions Follow-up Contact general practitioner Send sympathy card Make phone call at one and six weeks, as appropriate Allow opportunity for interview with treating doctor to address unanswered questions Back to text

Aled G Williams · Debra L O'Brien · Kylie J Laughton · George A Jelinek

Editorial Neglect of bereavement care in general hospitals A family-centred approach is needed in caring for the bereaved in our community MJA 2000; 173: 456 Technological advances in medicine during the 20th century, while achieving marvellous gains in combating disease, have made care of the dying harder.1 At the same time, care of the bereaved has drastically deteriorated with the relative loss of family medicine and increasing emphasis on specialist care.2 Such neglect has occurred particularly in general hospitals in Australia, in which 38 000 deaths (30% of total deaths annually in Australian hospitals) occur each year.3 The morbidity resulting from bereavement contributes substantially to healthcare costs. We are challenged to redress this serious problem by adopting a more family-centred model of care, which should begin to operate from the time of first admission of any index patient. The continual pressure on acute general hospital units can easily lead to neglect of the bereaved, unless the unit leader routinely seeks feedback on bereavement follow-up at multidisciplinary meetings. Fleeting contact with several care providers does not easily permit relationships to become established between staff and patients' relatives. Clearly, continuity of care established with relatives before death could facilitate ease of support following the patient's death. In their article about death in the emergency department (ED) in this issue of the Journal, Williams and colleagues offer guidelines for dealing with bereaved relatives.4 They describe a sensitive approach to the communication of news of tragic death; care of the family as they view the deceased's body and express their grief; and a follow-up program that involves comforting bereaved relatives and maintaining contact with them. This model utilises each member of the multidisciplinary team and reaches out to involve the general practitioner. It promotes continuity of care and takes medical practice beyond the usual patient-centred approach to include the wider community. Bereavement support is indeed a broad community responsibility. Medical resources should be directed to bereaved people at greatest risk of a severe grief reaction, including those for whom the death was unexpected or in some way shocking; those who had an ambivalent or over-dependent relationship with the deceased; those particularly vulnerable to depression or psychiatric illness; and those likely to have poor support networks.5 Careful inquiry from a practitioner adopting a family-centred model of care can help to determine whether particular family members are at high risk. The GP is well placed to sustain regular contact with "at risk" individuals over subsequent months and intervene if complications develop. The manner of death, including death by suicide or homicide, may be associated with stigma, the horror of violence, and a pressing need for relatives to understand the sequence of events leading up to the death.6 In such instances, it is vital that GPs meet with family members to address these issues and that they continue to support the family, referring individuals to psychological or family therapy services if appropriate. Untimely and unexpected death occurs not only in the ED, but also regularly within coronary and intensive care units, and occasionally in obstetric and surgical settings, where the emphasis is on repair and rehabilitation.7 The goal of care in such teams is restitutive,8 and hope of recovery is high. Any relationships between staff and relatives are likely to be brief and tentative. Nevertheless, such units need to have established guidelines, along the lines of those outlined by Williams and colleagues, for responding to unexpected death. Other units (eg, renal, oncology or geriatric services) deal with patients who have chronic illness, with slow but steady progression, sometimes leading to an acceptance of dying in a courageous or heroic manner.9 Emphasis here should be on quality of life and relief of specific symptoms. Generally, staff of these units build good relationships with their patients' relatives and provide a bereavement follow-up program after death. Over the past decade, palliative care services have set up bereavement follow-up programs similar to that described by Williams and colleagues for the ED. They have discovered the importance of a structured approach,10 involving selection of the most appropriate staff member (based on continuity of care) to sustain contact during bereavement, and provision of a written record of outcome. Hospice care has sought to redress the neglect of the dying that can occur when hospitals are focused primarily on the fight for life. The hospice tradition promotes a healthy acceptance of the dying process, encouraging doctors to listen to and care compassionately for the dying and their families. This healing intent must be extended to embrace the care of bereaved relatives, not only in the context of palliative care, but in all other areas. A major cultural shift is needed in many Australian hospitals today to strive for better care of the bereaved in our community. The guidelines proposed by Williams and colleagues4 serve as a model that warrants adoption by the whole hospital system. David W Kissane Professor, and Director of Palliative Medicine Centre for Palliative Care, University of Melbourne, Melbourne, VIC Seale C. Constructing death. The sociology of dying and bereavement. Cambridge: Cambridge University Press, 1998. Parkes CM. Bereavement: studies of grief in adult life. 3rd ed. Madison, Connecticut: International Universities Press, 1998. Australian Bureau of Statistics. Australia now -- a statistical profile. Population, deaths. Canberra: ABS, 2000. Williams AG, O'Brien DL, Laughton KJ, Jelinek GA. Improving services to bereaved relatives in the emergency department: making healthcare more human. Med J Aust 2000; 173: 480-483. Kissane DW. Grief and the family. In: Bloch S, Hafner J, Harari E, Szmukler G, editors. The family in clinical psychiatry. Oxford: Oxford Medical Publications, 1994: 71-91. Hassan R. Suicide in Australia. In: Kellehear A, editor. Death and dying in Australia. Melbourne: Oxford University Press, 2000: 190-207. Field MJ, Cassel CK, editors. Committee on Care at the End of Life, Institute of Medicine. Approaching death: improving care at the end of life. Washington: National Academy Press, 1997. Frank A. The wounded storyteller. Chicago: University of Chicago Press, 1995. Field D. Awareness and modern dying. Mortality 1996; 1: 255-266. Kissane DW. A model of family-centered intervention during palliative care and bereavement: focused family grief therapy (FFGT). In: Baider L, Cooper CL, Kaplan De-Nour A, editors. Cancer and the family. 2nd ed. Chichester: Wiley, 2000: 175-197. Make a comment

David W Kissane

MJA Practice Essentials Psychosocial support, treatment of metastatic disease and palliative care Michael A Ashby, David W Kissane, Geoffrey F Beadle, Alan Rodger MJA 1996; 164: 43-49 Psychosocial support - Principles of oncological treatment of metastatic breast cancer - Complementary or alternative therapies - Palliative care - Conclusion - Acknowledgement - References - Further reading and reference material - Authors' details - - This article deals with four linked but distinct aspects of care for women with breast cancer, with an emphasis on the pivotal role of the general practitioner: Modern medicine is fast recognising the need for psychosocial support of patients; in fact, for an integrated approach to caring for the whole person at all stages of illness. Oncological treatment of metastatic disease needs to be individualised and based on realistic expectations of outcome balanced against side effects. An open dialogue about the role and appropriateness of so-called "alternative" or "complementary" therapies is needed. Despite significant improvements in palliative care quality and access in Australia in the last decade, many practitioners still require support and advice in this demanding area of care (particularly about difficult symptom control). Psychosocial support Women with breast cancer are likely to experience various psychosocial problems at different stages of their illness (Box 1). The most useful way of differentiating between a normal grief reaction and a classifiable psychiatric disorder is to assess the degree to which the distress is generating undesirable personal, family and social effects and to monitor intensity of symptoms. To assist with the diagnosis of depression in the presence of a medical illness, the Endicott9 criteria (depressed appearance, social withdrawal or decreased talkativeness, brooding, self-pity or pessimism, and a lack of appropriate responsiveness in situations that would normally be pleasurable) can be used in place of somatic symptoms like fatigue, anorexia, weight loss and poor concentration. Psychosocial morbidity can extend throughout the family. It has been shown that for those women who enter palliative care programs, substantial psychological morbidity is identifiable in half the patients, a third of spouses and a quarter of their offspring.10 Family-centred care that recognises family members not only as primary care providers but also as second-order patients is essential.7 There is a clear role for general practitioners in this process, as an integral part of good family medicine practice. The themes which need to be addressed are summarised in Box 2. Therapeutic interventions should be appropriate to the stage of the disease and the woman's personal situation (Box 3). Good clinical care requires that medical, surgical and nursing staff provide opportunities for patients to express their concerns, anxieties and preoccupations throughout routine management. Coping skills and cognitive behaviour therapies11 may be more applicable to early stage disease, while supportive psychotherapies which encourage the sharing of feelings about existential concerns are more suited to patients with metastatic cancer.12 Another approach utilises the central concept of loss. Women with breast cancer grapple with many losses -- their health, breast, sense of femininity, confidence, dreams and belief in the future. A primary goal, therefore, is to facilitate adaptive grieving. So-called grief therapy13 can be pivotal in much cancer counselling, particularly in the light of the pervasive pressure on women "to think positively". It is also important to deal with the possibility of death. Education and clarification of fears can help promote a sense of realism-based mastery. Group therapies are cost-effective, provide a supportive network and are acceptable to about two-thirds of women. Pharmacological treatments complement psychotherapeutic approaches (see Box 4). Major tranquillisers and benzodiazepines can allay anxiety, assist in crises and help to contain distressing features of delirium. Tricyclic antidepressants and selective serotonin reuptake inhibitors help in depressive disorders. They are prescribed for major depression, when sleep disturbance or other depressive symptoms are moderate in degree and when poor coping and chronic grief are persisting. Reduced sex drive2 and reduced frequency of intercourse invariably follow the initial diagnosis. Open communication about intimacy and sexuality is desirable and may need to be initiated by clinicians. The general practitioner should be approachable for first contact on these issues. Clarification of the role of altered body image, grief, depression, the nature of the relationship and adjustment of both partners is necessary before endocrine assessment is considered. Although at present psychological interventions are usually offered only to those who have become symptomatic or are perceived to be particularly at risk, recent studies suggesting an association between psychological wellbeing and survival compel us to consider whether such therapies should be offered routinely.12,14,15 The experience of stressful life-events, loss of hope, helplessness, social isolation and failure to share negative emotions have all been associated with poorer outcome.16 Large multicentre replication studies of group therapy for women with both early stage and metastatic breast cancer are currently proceeding in the United States, Canada and Australia, in the hope of clarifying how critical this role of support and coping is to overall survival. Principles of oncological treatment of metastatic breast cancer Metastatic breast cancer is incurable, but effective palliative treatment is possible for most patients. The five-year survival is about 5%-10%. In view of the variable natural history, treatment plans have to be tailored to the needs of each patient. Surgery, radiotherapy and systemic treatments have important and varying roles during the course of the disease. The relative value of each treatment is influenced by the dominant site(s) and distribution of metastastic spread, the severity of symptoms, the general condition of the patient, rate of progression of the disease and response to previous treatments. It is crucial with all forms of palliative therapy -- local or systemic -- that the benefits in terms of symptom control are weighed against the expected toxicities of treatment. The patient must be involved in these decisions as expectations, tolerances and wishes will vary. Advice and support of general practitioners and palliative care staff may be useful to complement the input of the oncologist. Systemic therapies Approximately 30%-35% of patients with metastatic breast cancer respond to endocrine treatment and 60%-70% to cytotoxic drug treatment. Box 5 summarises the principles of selection of these treatments. The therapeutic effect of endocrine treatment is mediated through the oestrogen and progesterone receptors, and the most important single characteristic predicting response to hormone therapy is the original tumour receptor status (rate of response 50%-60% if receptors are present, 10% if absent). Resistance to initial endocrine treatment is associated with a very small chance of a response to subsequent hormone manipulation, but progression after a good initial response is an indication to continue with second and even third line endocrine therapy until the disease becomes hormone resistant. In practice, patients rarely respond to more than two sequential endocrine treatments. Endocrine therapy: For premenopausal patients ovarian ablation (by oophorectomy or radiation) may be replaced by medical treatment with the luteinising hormone-releasing hormone agonists (e.g., goserelin and leuprorelin acetate). For postmenopausal women the antioestrogen tamoxifen and oral progestogens (medroxyprogesterone acetate and megestrol acetate) are the most commonly prescribed treatments. Aromatase inhibitors (e.g., aminoglutethimide and formestane [4-hydroxy androstenedione]) have replaced adrenalectomy for those postmenopausal patients who have exhibited protracted responses to initial endocrine treatment. Chemotherapy: The initial high response rate of metastatic breast cancer to cytotoxic drugs and the eventual development of resistance raise several important issues in management. Combinations of cytotoxic drugs offer a better chance of response than single agents, but do not yield substantially better survival for most patients. The exception is those patients with life threatening visceral metastases (normally in liver and lung). Regimens including anthracyclines (doxorubicin, epirubicin) are the most effective and are useful for aggressive or life threatening disease. Less aggressive disease may be treated with less toxic regimens, frequently based on mitozantrone, although there are a considerable number of alternative options. Second and even third line regimens are indicated when disease progresses after an initial response, but response rate and duration are usually less with each subsequent regimen. All treatments must be presented to patients as a balance between a potentially beneficial tumour response and unwanted cytotoxic effects. Studies of dose intensification of cytotoxic drugs suggest higher rates of response but only a minor improvement in survival. The logical extension of these observations is the application of very high doses of cytotoxic drugs followed by bone marrow rescue, in an attempt to achieve maximum tumour control. Initial results indicate high rates of response, but the ultimate worth of these treatments awaits further evaluation and their use should be confined to assessment in randomised controlled trials. Alternative approaches include constant infusional chemotherapy, such as fluorouracil given over many weeks, often with low toxicity. Newer agents such as taxol have been extensively researched and are likely to be approved for second or third line treatments. The sensitivity of metastatic breast cancer to both cytotoxic and hormonal treatments and their different mechanisms of action make combined treatments attractive. However, the results of a trial comparing sequential and concurrent administration of tamoxifen and cytotoxic drugs (doxorubicin and cyclophosphamide) failed to demonstrate better survival with combined modality treatment.17 One Australian study comparing standard (continuous) and less intensive (intermittent course) cytotoxic drug treatment showed that the control of symptoms and quality of life were superior in the group receiving continuous chemotherapy, with a longer time to progression of cancer and better survival in this group.18 A follow-up study evaluating the physician's assessment of quality of life showed that those patients assessed as having better quality of life at the time of entry into the study also had better survival.19 It remains to be determined at what point dose intensity and better survival in metastatic breast cancer will be offset by unacceptable quality of life, and the study should not be interpreted as justifying the routine use of chemotherapy for advanced disease in the absence of defined symptoms. It is also possible that the patients receiving the more intensive treatment believed (despite information to the contrary) that they had a better chance of cure or remission. Patients' beliefs about treatment goals certainly require more research and understanding, for both standard and alternative therapies. Radiotherapy: Radiotherapy plays a major part in the palliation of a variety of localised symptoms. Box 6 lists the role of palliative radiotherapy, which can generally be given in one to five (daily) fractions, frequently on an outpatient basis, with the reasonable expectation of a significant impact on symptom control for most patients. A randomised study of bone pain palliation has confirmed that short courses are as effective and non-toxic as longer courses of two weeks or more.20 Complementary or alternative therapies Interventions such as massage, relaxation, aromatherapy, hypnotherapy, acupuncture and homoeopathy have gained widespread acceptance. The use of alternative therapies (such as naturopathy, nutritional, immunological or physical treatments) is also common, and may set the patient and clinician on a direct path of conflict which can be difficult to resolve. Consequently, many patients do not tell their clinicians that they are using them.21,22The need for patients to participate in decisions about treatment should be emphasised at all times. Doctors should recognise the limitations of modern oncological treatment, and be prepared to acknowledge the patient's need to explore other avenues. It is often helpful for doctors to offer to comment on this issue and such an offer is rarely rejected. There may be times when doctors feel that they must advise patients of a dangerous or futile treatment, with the occasional possibility of real harm being caused, and it should be pointed out that many therapies are completely untested. Sometimes it is helpful to differentiate between therapies which patients believe might cure them and those that help them to live more comfortably with their disease. Gentle exploration of patients' beliefs about potential curability of their disease may be important. Positive thinking strategies which obstruct appropriate care delivery for a dying patient may also need skilful addressing. Palliative care Modern palliative medicine offers a model of care which focuses on the whole person, within their social and emotional context. There is a difference between the adoption of a palliative approach and the delivery of holistic, multidisciplinary care appropriate to the individual patient's needs and wishes. It is not simply a matter of knowing when to stop oncological treatment, nor of a "cookbook" style of symptomatic management. The focus must be on the person rather than the disease, although a good knowledge of the natural history of the disease and relevant oncological practice is essential. Active oncological intervention is often required for malignant bone pain, fungating chest-wall disease or liver, lung or brain metastases, and can be of value until a very late stage in the disease process. About 10% of patients with metastatic breast cancer will develop symptomatic hypercalcaemia (symptoms include nausea, vomiting, polyuria, drowsiness) and should be treated with intravenous rehydration, diuretics and a bisphosphonate infusion. Pleural effusions may require aspiration if symptomatic. If they recur, pleurodesis with talc, tetracycline or BCG may be required for control of breathlessness. Meningitic carcinomatosis is very rare and may respond to intrathecal cytotoxic agents or craniospinal irradiation. It is important that the general practitioner be fully informed of the patient's management and condition. During a long disease course, often with multiple oncological events, it is all too easy (and understandable) for patients and families to become attached to a hospital oncology service and its staff. This may pose problems for palliative and terminal care at home, as a hitherto relatively uninvolved general practitioner may have to suddenly take over care. See Box 7 for definition of palliative care. Early referral to a specialised palliative care source should be considered for most patients with metastatic disease, to introduce future options in palliative care. Although sometimes confronting for patients and their oncological caring team, a commitment of future support and proper care planning is of real value in allowing patients to plan to live until they die. The general practitioner should be actively involved in this process of communication to ensure the smoothest possible transitions from curative to palliative and terminal care. In psychosocial support, emphasis is often required on issues of family history (anxieties about daughters developing the disease), body image and loss of femininity, although concerns about the latter may be less pronounced than at initial diagnosis. For younger women with children, death will leave the children without a mother, which is probably the hardest aspect for a woman to bear. Work on helping to hand over present and future parenting roles is required. The proper and appropriate use of opioid drugs is an essential skill for control of pain and shortness of breath. Nearly 30 years of safe international clinical experience has led the World Health Organization to recommend morphine as the opioid of first choice in cancer pain management.23 Other drugs (either alone or in combination with morphine) are usually required for deep somatic pain caused by bone metastases or liver capsule inflammation (non-steroidal anti-inflammatory drugs and corticosteroids), and neurogenic pain (antidepressants, anticonvulsants, membrane stabilising agents). Specialist help is nearly always required for neurogenic pain, often with the additional involvement of an anaesthetist with a special interest in cancer pain management. The regular oral administration of the right dose of an appropriate drug or drug combination is the cornerstone of modern cancer pain management. The dose of morphine is adjusted according to the patient's top-up (or "breakthrough") requirements. The management of cancer pain with morphine is somewhat unusual in that there is no absolute upper dose limit. Most patients will achieve initial pain control on an oral 24-hour morphine dose in the range of 100-200 mg, but there is very wide individual variation and if the dose continues to rise without response the cause of the pain and the drug choice should be reassessed. Advice about anticipated side effects and their prompt and effective management is essential, together with frequent review of pain control and analgesic dose. Intermittent subcutaneous injections or infusions may be used if the oral route is not possible (e.g., because of nausea and vomiting), or not effective. Shortness of breath, anxiety, acute delirium and so-called terminal restlessness may be managed with anxiolytic drugs such as diazepam, midazolam or clonazepam (after looking for a specific treatable underlying cause). Antiemetics also require regular administration in adequate doses, and may need to be used in combination (e.g., prochlorperazine 25 mg rectally 3-4 times daily with metoclopramide 30-90 mg per 24 hours by subcutaneous infusion). Bowel care is important (and often neglected) throughout the illness, but particularly towards the end of life. Most patients taking morphine will require a regular prophylactic aperient. Intensification of supports and symptomatic treatment will usually be required as death approaches, particularly if the patient and family have chosen for this to occur at home with the help of a domiciliary palliative care team (Box 8). Conclusion Doctors are being challenged to focus on the needs of the whole person and to work collaboratively with colleagues from other disciplines. Psychosocial support may be required from the time of diagnosis and should be an intrinsic part of caring throughout the course of the illness. It is also now widely accepted that there is more to the management of incurable disease than tumour regression alone, and therapeutic interventions need to be critically assessed on the basis of their impact on palliative endpoints, quality of life and psychological well-being. Acknowledgement We thank Dr Angela Rutherford, General Practitioner, East Brunswick Medical Centre, Victoria, for her comments and assistance. References Walker LG, Cordiner CM, Gilbert FJ, et al. How distressing is attendance for routine breast screening? Psycho-Oncology 1994; 3: 299-304. Fallowfield LJ, Hall A, Maguire GP, et al. Psychological outcomes of different treatment policies in women with early breast cancer outside a clinical trial. BMJ 1990; 301: 575-580. Silberfarb PM, Maurer LH, Crouthamel CS. Psychological aspects of neoplastic disease: 1. Functional status of breast cancer patients during different treatment regimens. Am J Psychiatry 1980; 137: 450-455. Dean C. Psychiatric morbidity following mastectomy: preoperative predictors and types of illness. J Psychosom Res 1987; 31: 385-392. Bukberg J, Penman D, Holland JC. Depression in hospitalised cancer patients. Psychosom Med 1984; 46: 199-212. Maguire P. The repercussions of mastectomy on the family. Int J Fam Psychiat 1981; 6: 485-503. Kissane DW, Bloch S, Burns WI, et al. Perceptions of family functioning and cancer. Psycho-Oncology 1994; 3: 259-269. Massie MJ, Holland J, Glass E. Delirium in terminally ill cancer patients. Am J Psychiatry 1983; 140: 1048-1050. Endicott J. Measurement of depression in patients with cancer. Cancer 1984; 55: 2243-2248. Kissane DW, Bloch S, Burns WI, et al. Psychosocial morbidity in the families of patients with cancer. Psycho-Oncology 1994; 3: 47-56. Moorey S, Greer S. Psychological therapy for patients with cancer. A new approach. Oxford: Heinemann, 1989. Spiegel D, Bloom JR, Kraemer HC, et al. Effect of psychosocial treatment on survival of patients with metastatic breast cancer. Lancet 1989; 1: 888-891. Worden JW. Grief counselling and grief therapy. 2nd ed. New York: Springer, 1991. Fawzy FI, Fawzy NW, Hyun CS, et al. Effects of an early structured psychiatric invention, coping, and affective state on recurrence and survival 6 years later. Arch Gen Psychiatry 1993; 50: 681-689. Greer S, Morris T, Pettingale KW, et al. Psychological response to breast cancer and 15-year outcome. Lancet 1990; 335: 49-50. Mulder CL, Van der Pompe G, Spiegel D, et al. Do psychosocial factors influence the course of breast cancer? A review of recent literature, methodological problems and future directions. Psycho-Oncology 1992; 1: 155-167. ANZ Breast Cancer Trials Group. A randomised trial of post-menopausal patients with advanced breast cancer comparing endocrine and cytotoxic therapy given sequentially or in combination. J Clin Oncol 1982; 4: 186-193. Coates A, Gebski V, Bishop JF, et al. for the ANZ Breast Cancer Trials Group. Improving the quality of life during chemotherapy for advanced breast cancer. A comparison of intermittent and continuous treatment strategies. N Engl J Med 1987; 317: 1490-1495. Coates A, Gebski V, Signorini D, et al. for the ANZ Breast Cancer Trials Group. Prognostic value of quality-of-life scores during chemotherapy for advanced breast cancer. J Clin Oncol 1992; 10: 1833-1838. Price P, Hoskin PJ, Easton D, et al. Prospective randomised trial of single and multifraction radiotherapy schedules in the treatment of painful bony metastases. Radiother Oncol 1986; 6: 247-255. Downer SM, Cody MM, McCluskey P, et al. Pursuit and practice of complementary therapies by cancer patients receiving conventional treatment. BMJ 1994; 309: 86-89. Eisenberg DM, Kessler RC, Foster C, et al. Unconventional medicine in the United States. Prevalence, costs and patterns of use. N Engl J Med 1993; 328: 246-252. World Health Organization. Cancer pain relief. Geneva: WHO, 1986. Further reading and reference material Woodruff R. Palliative medicine. Symptomatic and supportive care for patients with advanced cancer and AIDS. Melbourne: Asperula, 1993. Raphael B. The anatomy of bereavement. A handbook for the caring professions. London: Routledge, 1984, reprinted 1990. Dunlop RJ, Hockley JM. Terminal care support teams. The hospital-hospice interface. Oxford: Oxford University Press, 1990. Buckman R. I don't know what to say. How to help and support someone who is dying. Sydney: Sun, 1990. Derek Doyle. Caring for a dying relative. A guide for families. Oxford: Oxford University Press, 1994. Doyle D, Hanks GWC, Macdonald N, editors. Oxford textbook of palliative medicine. Oxford: Oxford University Press, 1993. Trevelyan J, Booth B. Complementary medicine for nurses, midwives and health visitors. London: Macmillan, 1994. Spiegel D. Living beyond limits. New York: Times Books, 1993. Authors' details Palliative Care Centre, McCulloch House, Monash Medical Centre, Clayton, VIC. Michael A Ashby, FRCR, FRACP, Professor of Palliative Care, Department of Medicine, Monash University. Department of Psychiatry, Monash Medical Centre, Clayton, VIC. David W Kissane, FRACGP, FRANZCP, Senior Staff Specialist, and Senior Lecturer, Department of Psychological Medicine, Monash University. Wesley Medical Centre, Auchenflower, QLD. Geoffrey F Beadle, FRACP, FRACR, Medical Oncologist. William Buckland Radiotherapy Centre, The Alfred Health Care Group, Alfred Hospital, Prahran, VIC. Alan Rodger, FRCS, FRACR, Director and Professor, Department of Radiation Oncology, Monash University. No reprints will be available. Correspondence: Professor M A Ashby, McCulloch House, Monash Medical Centre, Clayton, Vic 3168. 1: Frequency of psychosocial problemsPsychosocial problemsPhase of illnessFrequencyGriefAll phasesUniversalAnxiety disordersMammography1 20%Diagnosis240%Adjuvant therapies233%Recurrence315%Palliative careCommonDepressive disordersMammography5%Diagnosis226%Adjuvant therapies4Minor 20%;major 5%Recurrence315% Palliative care542%Sexual disordersRemission/survival2 38%Family relationship problemsRemission633%Palliative care746% Back to text 2: Themes covered in psychological therapies for patients with breast cancer Multiple losses Death anxiety Fear of recurrence Living with uncertainty Understanding treatment regimens Body and self-image Sexuality Relationships with partner, family and doctors Surgical reconstruction Lifestyle review Future goals Back to text 3: Range of psychosocial supportsPsychotherapeutic techniqueIndicationsEarly stage group therapyGroup therapy is being assessed as an adjuvant to initial medical therapyAdvanced breast cancer group therapyDistress and poor coping; anxiety and depression; routine supportIndividual supportive psychotherapySymptomatic anxiety and depressionFamily therapyFamily distress and poor copingCouple therapyMarital and sexual difficultiesCommunity-based self-help groupsGeneral supportBack to text 4: Useful psychotropic agentsDepressiondothiepin75-300 mg at nightmianserin20-120 mg at nightsertraline50-200 mg dailyparoxetine20-40 mg dailymoclobemide150-900 mg divided into two daily dosesAnxietydiazepam2-40 mg divided into two or three daily dosesclonazepam0.5-8 mg divided into two daily dosesAgitation/deliriumhaloperidol1.5-10 mg divided into two or three daily dosesmidazolam1-5 mg single doses by intravenous injection, as required Back to text 5: Guidelines for selecting systemic treatmentInitial systemic treatmentEndocrine treatmentCytotoxic drug treatmentClinically indolent diseaseAggressive diseaseLong disease-free intervalShort disease-free intervalSlow progressionRapid progressionPositive tumour hormone receptor statusNegative tumour hormone receptor statusLow tumour bulk/few sitesHigh tumour bulk/many sitesSpecial site(s): bone marrow, liver, lung (lymphangitis carcinomatosa)Second and subsequent systemic treatmentsEndocrine treatmentCytotoxic drug treatmentPrior good response to endocrine treatmentProgression after first endocrine treatment requiring more intensive therapy Minimal or no response to previous endocrine treatments Good response to previous cytotoxic drugs Back to text 6: Indications for palliative radiotherapy Locoregional recurrence: ulceration, bleeding supraclavicular or axillary nodes Metastases:bone pain- localised: external beam localised fields- widespread: hemibody irradiationbase of skull/orbital diseaseimpending or pathological fractures- internal fixation and postoperative radiotherapybrain metastasescord compression- surgical decompression and stabilisation rarely indicatedmediastinal nodesBack to text 7: Definition of palliative care Hospice and palliative care is defined as a concept of care which provides coordinated medical, nursing and allied services for people who are terminally ill, delivered where possible in the environment of the person's choice, and which provides physical, psychological, emotional and spiritual support for patients and for patients' families and friends. The provision of hospice and palliative care services includes grief and bereavement support for the family and other carers during the life of the patient, and continuing after death. From: Australian Association for Hospice and Palliative Care Inc. Standards for Hospice and Palliative Care Provision, March 1994. Back to text 8: Clinical and practical issues in planning the palliative care of a person dying at home Pain and symptom control Place of care and death (home, hospice, hospital, nursing home) Role of the team members (who to call for help and when) Aids and equipment Distressing events (expected and unexpected, such as terminal confusion, vomiting or haemorrhage) The actual dying process (explaining to family how death usually occurs) What to do at time of death What to do after death (funeral arrangements, death certificates) Back to text

Michael A Ashby · David W Kissane · Geoffrey F Beadle · Alan Rodger

Synopsis The costs of subacute care (palliative care, rehabilitation medicine, psychogeriatrics, and geriatric evaluation and management) and non-acute care (nursing home, convalescent and planned respite care) are not adequately described by existing casemix classifications. The predominant treatment goals in subacute care are enhancement of quality of life and/or improvement in functional status and, in non-acute care, maintenance of current health and functional status. A national classification system for this area has now been developed -- the Australian National Sub-Acute and Non-Acute Patient Classification System (AN-SNAP). The AN-SNAP system, based on analysis of over 30 000 episodes of care, defines four case types of subacute care (palliative care, rehabilitation, psychogeriatric care, and geriatric evaluation and management) and one case type of non-acute care (maintenance care), and classifies both overnight and ambulatory care. The AN-SNAP system reflects the goal of management -- a change in functional status or improvement in quality of life -- rather than the patient's diagnosis. It will complement the existing AN-DRG classification. Introduction The Australian healthcare system is about to implement a new casemix classification system for subacute and non-acute care, the costs of which are not adequately described by traditional diagnostic tools. Subacute care comprises palliative care, rehabilitation medicine, psychogeriatrics, and geriatric evaluation and management. Non-acute care includes nursing home, convalescent and planned respite care. The new casemix classification system, which includes hospital as well as community care, reflects the goal of management -- a change in functional status or improvement in quality of life -- rather than the underlying patient diagnosis. Background Subacute casemix has been evolving for 15 years. In 1983, when the United States Health Care Financing Administration decided that payments for hospital care would be on a prospective payment system, based on acute-care diagnosis-related groups (DRGs), rehabilitation, psychiatric, children's and long-term facilities were specifically excluded. It was recognised that these forms of care, although not acute, were still complex and expensive and required long hospital stays. In 1987, a US Department of Health and Social Services report reiterated that their current DRG system did not adequately take into account the special circumstances of patients requiring long hospital stays.1 Studies in the United States over the following few years not only confirmed that DRGs did not adequately describe costs in one of these areas of care (rehabilitation medicine),2 but that as a consequence quality of care had deteriorated, as measured by changed length of hospital stay, increased readmission rates and a rising number of nursing home admissions.3-5 As casemix development progressed in Australia, Australian studies6-12 also expressed the need for a different approach for costing of rehabilitation,6,8-10,12 geriatric evaluation and management,6,9,12 palliative care7,9,11,12 and psychogeriatrics.6,12 The term subacute care was coined in 199213 to describe "care which is provided for a person who requires health services but whose principal medical diagnosis (modified for factors such as age and procedures) is not adequate in explaining the need for, or the cost of, the services that s/he receives". Goals of subacute and non-acute care In subacute care the predominant goal is enhancement of a patient's quality of life and/or improvement in his or her functional status. In non-acute care the predominant goal is maintenance of a patient's current health and functional status. Because of this difference in goals, it was expected that factors other than diagnosis were more likely to explain the costs of these forms of care. Rehabilitation: Factors contributing to the success of rehabilitation programs have included patient characteristics such as functional status on admission, age, disease site, time from referral to beginning of program, comorbidities such as cognitive function and depression, and availability of resources.14-16 The factor which appears in US and Australian studies to predict cost most accurately in these areas of care is a patient's functional status on admission.12,15-17 Palliative care: Australian clinicians were instrumental in developing a casemix classification system with a primary approach from a clinical perspective. The development involved broad consultation and collaboration. The palliative care classification identified stage of illness or palliative care phase (eg, stable, deteriorating, terminal), symptom severity and acuity level (or nursing dependency) as the major factors explaining costs for this form of care.7 Psychogeriatrics and other aged care: The goals of admission in aged care are improving health status, modifying symptoms and enhancing function, living conditions, behaviour and quality of life.12 Subacute and non-acute care classifications Several classification systems for subacute and non-acute episodes of care have been developed, including the Resource Utilisation Groups and the California Long Term Care System.18 The Resident Classification Index19 is an Australian classification system used in nursing homes to classify non-acute episodes of care. In the United States the FIM-FRG system (Functional Independence Measure- Function Related Groups)17 for rehabilitation medicine is the most developed. Studies in Australia have continued to demonstrate that the best predictor of cost for subacute care is the goal of care. The most recent studies are the 1995 Victorian Rehabilitation Casemix Report10 and the 1996 NSW Sub-Acute Casemix Area Network Project.12 AN-SNAP study The Australian National Sub-Acute and Non-Acute Patient Casemix Study20 was conducted in 1996 in 99 hospital and community health sites in all Australian States and Territories and in five sites in New Zealand. Over 30 000 episodes of care were analysed, including overnight, same day, outpatient and community episodes of care. The study established that there are five case types of subacute and non-acute care. Subacute care includes palliative care, rehabilitation, psychogeriatric care, and geriatric evaluation and management; and the final case type -- maintenance care -- is defined as non-acute care. Each of the five case types is defined according to the characteristics of the patient and the goal of care, and not the institution or service in which she or he is treated (eg, a patient may receive geriatric evaluation and management in a hospice, or palliative care in a rehabilitation unit). A critical finding of the study was that across the spectrum of case types and classes there is significant diversity in the cost of subacute and non-acute care for both overnight and ambulatory episodes. For example, there is a 30-fold variation in episode cost and a five-fold variation in per diem cost between the most expensive and the least expensive classes in the overnight classification, thus confirming the necessity for a classification in this area to allow for appropriate output-based funding. AN-SNAP classification system From the study, a national classification for subacute and non-acute care was developed -- the Australian National Sub-Acute and Non-Acute Patient Casemix Classification System, or AN-SNAP classification.20 AN-SNAP version 1 (Box 1)21 classifies both overnight and ambulatory care. It has 134 classes and the classification explains 58% of the variation in all episode costs. Of this 58%, 21% is contributed by episode type and 37% by the classes. The overnight branch has 66 classes and the classification explains 47% of the variance in the cost of overnight care. The ambulatory branch has 68 classes and the classification explains 28% of the variance in the cost of ambulatory care. These results are an improvement on the performance achieved by acute-care DRGs. Analysis of the decision trees for overnight and ambulatory care in Box 1 shows the factors which have been incorporated into the system as predictors of cost. Palliative care -- phase, functional dependence as measured by RUG-ADL (resource utilisation groups - activities of daily living),18 and age; Rehabilitation -- impairment groupings, functional status as measured by FIM (Functional Independence Measure),22 and age; Psychogeriatrics -- psychiatric symptom severity and functional status as measured by the HoNOS (Health of the Nation Outcome Scale);23 Geriatric evaluation and management -- cognitive status in addition to motor capacity and age; and Maintenance care -- functional status. The AN-SNAP study showed that the variables driving costs in the inpatient setting are also important cost drivers in the ambulatory setting. However, community care is inherently more complex than institutional care. Common variables across institutional and community care are necessary, but are insufficient in explaining cost variations. In consequence, the classification makes use of some community variables not required in institution care (eg, provider type and assessment or treatment episode). Implications of AN-SNAP The implementation of this classification has important implications. Firstly, a number of classifications are now available in Australia and policy decisions on the interaction between these classifications are required. Secondly, data on many of the characteristics used in AN-SNAP are currently collected by individual service providers, but most are not routinely collected by existing hospital and community information systems. AN-SNAP, along with its further development, has been endorsed by the Australian Casemix Clinical Committee for adoption as the national classification for sub- and non-acute care. Implementation remains a State and Territory issue which requires a planned, staged approach. Already some States, including Queensland and New South Wales, are implementing AN-SNAP, and others have indicated their intention to do so in the near future. The adoption of the system will complement the existing DRG system, as illustrated in the New South Wales approach (Box 2). References Batavia AI, DeJong G. Prospective payment for medical rehabilitation: the DHSS Report to Congress. Arch Phys Med Rehabil 1988; 69: 377-380. Stineman MG, Escarce JJ, Goin HE, et al. A case-mix classification system for medical rehabilitation. Med Care 1994; 32: 366-379. Evans RL, Hendricks RD, Bishop DS, et al. Prospective payment for rehabilitation: effects on hospital readmission, home care and placement. Arch Phys Med Rehabil 1990; 71: 291-294. Fitzgerald JF, Fagan LF, Tierney WM, Dittus RS. Changing patterns of hip fracture care before and after implementation of the prospective payment system. JAMA 1987; 258: 218-221. Heinemann AW, Billeter J, Betts HB. Prospective payment for acute care: impact on rehabilitation hospitals. Arch Phys Med Rehabil 1988; 69: 614-618. Roberts R, McKinley S, Brooks B, et al. The Australian National Non-Acute Inpatient Project. Aust Health Rev 1993; 16: 300-319. Smith M, Firms P. Palliative Care Casemix Classification -- testing a model in a variety of palliative care settings -- preliminary results. Proceedings of the Sixth Australian Casemix Conference; 1994 Aug 29-31; Hobart. Canberra: Commonwealth Department of Human Services and Health, 1994. Baker W. Casemix in rehabilitation -- is it safe to dip into functionally related groups? Proceedings of the Sixth Australian Casemix Conference; 1994 Aug 29-31; Hobart. Canberra: Commonwealth Department of Human Services and Health, 1994. Lee L, Goor E, Kennedy C, et al. Non-acute casemix in the Illawarra. J Qual Clin Pract 1994; 14: 23-30. Coopers & Lybrand. Rehabilitation Casemix Project. Final Report. Melbourne: Victorian Department of Health and Community Services, 1995. Hindle D. The Victorian Palliative Care casemix project: statistical analysis and funding recommendations. Wollongong: Centre for Health Service Development, University of Wollongong, 1995. Eagar K, Cromwell D, Kennedy C, Lee L. Classifying sub-acute and non-acute patients: results of the NSW Casemix Area Network Study. Aust Health Rev 1997; 20: 56-74. Eagar K, Innes K. Standard definitions and source data for hospitals in Australia, Canberra: Commonwealth Department of Health, Housing and Community Service, 1992. Carey RG, Posavac EJ. Who makes the most progress in inpatient rehabilitation? An analysis of functional gain. Arch Phys Med Rehabil 1988; 69: 337-343. Rondinelli RD, Murphy JR, Wilson DH, et al. Predictors of functional outcome and resource utilisation in inpatient rehabilitation. Arch Phys Med Rehabil 1991; 72: 447-453. Stineman MG, Escarce JJ. Analysis of casemix and the prediction of resource use in medical rehabilitation. Phys Med Rehabil Clin North Am 1993: 4: 451-461. Stineman MG, Escarce JJ, Goin HE, et al. A case-mix classification system for medical rehabilitation. Med Care 1994; 32: 366-379. Fries BE, Cooney LM. Resource Utilisation Groups: a patient classification system for long term care. Med Care 1985; 23: 110-132. Commonwealth Department of Health, Housing and Community Services. Classification of nursing home residents. Handbook for directors of nursing. Canberra: DHHCS, 1992. Eagar K, et al. The Australian National Sub-Acute and Non-Acute Patient Classification (AN-SNAP): report of the National Sub-Acute and Non-Acute Casemix Classification Study. Wollongong: Centre for Health Service Development, University of Wollongong, 1997. Eagar K. The Australian National Sub-Acute and Non-Acute Patient (AN-SNAP) Casemix Classification. Proceedings of the Ninth Australian Casemix Conference; 1997 Sep 7-10; Brisbane. Canberra: Commonwealth Department Health and Family Services, 1997. Center for Functional Assessment Research, Uniform Data Set for Medical Rehabilitation. 1993 Guide to the Uniform Data Set for Medical Rehabilitation (Adult FIM), V4.0. Buffalo: State University of New York, Buffalo, 1993. Wing JK, Beevor AS, Curtis RH, et al. Health of the Nation Outcome Scales (HoNOS). Research and development. Br J Psychiatry 1998; 172: 11-18. Authors' details South Eastern Sydney Area Health Service, Sydney, NSW. Lynette A Lee, FAFRM, FRACMA, Director Clinical Services. Centre for Health Service Development, University of Wollongong, Wollongong, NSW. Kathy M Eagar, MA(Psych), Associate Professor and Director. Neringah Palliative Care Service, Sydney, NSW. Michael C Smith, MB BS, MRACMA, Director. Reprints will not be available from the authors. Correspondence: Dr L A Lee, South Eastern Sydney Area Health Service, PO Box 430, Kogarah, NSW 1485. E-mail: leelATsesahs.nsw.gov.au

Deaths, dying and the euthanasia debate in Australia The findings of a study of end-of-life medical decisions in Australia may provide ammunition for both supporters and opponents of euthanasia MJA 1997; 166: 173 Readers may print a single copy for personal use. No further reproduction or distribution of the articles should proceed without the permission of the publisher. For permission, contact the Australasian Medical Publishing Company Journalists are welcome to write news stories based on what they read here, but should acknowledge their source as "an article published on the Internet by The Medical Journal of Australia <http://www.mja.com.au/>". - - - ©MJA1997 General trends have emerged: there is majority community support for euthanasia or physician-assisted suicide The debate on euthanasia in Australia shifted abruptly from abstraction to reality with the passage of the Rights of the Terminally Ill Act by the Northern Territory Parliament in May 1995. Overnight, euthanasia and physician-assisted suicide became a legal choice for people with terminal illness.1 The Act has focused and polarised opinions on issues relating to medical decisions at the end of life. The deaths of three Australians (to date) under the provisions of the Act have been accompanied by an outburst of variously composed Greek choruses: citizens, ethicists, doctors, politicians, and media commentators. What should have been dignified and private affairs have been transformed into public events. The intent and provisions of the Act are supported by, among others, the Doctors' Reform Society, the Euthanasia Society, and the AIDS Council of New South Wales. They are opposed by the Australian Medical Association (AMA),2 the Australian Association for Hospice and Palliative Care,3 mainstream religions, Right To Life Australia, and organisations representing the aged and those with disabilities. The Act has been challenged in the High Court of Australia by Dr Chris Wake, the President of the Northern Territory Branch of the AMA, and Dr Djiniyinni Gondarra, an Aboriginal minister of the Uniting Church, who sought special leave to appeal the decision of the Northern Territory Supreme Court upholding the validity of the Northern Territory euthanasia law. The High Court has adjourned the hearing of this application,4 pending the outcome of the Euthanasia Laws Bill introduced in the Federal Parliament of Australia by Mr Kevin Andrews, a Member of the House of Representatives. The intention of the Bill is to deny the Northern Territory legislative power over euthanasia, and to render Northern Territory law null and void. It has passed through the Lower House, and the Australian Senate has referred the Euthanasia Laws Bill to its Legal and Constitutional Legislation Committee, which reports to the Senate in late February this year. Despite the strong arguments advanced by both sides of the debate, a critical component absent from the assertions are actual data on end-of-life medical decisions. Most Australian surveys have used hypothetical models.5-9 The limitations of these studies include notional concepts; inconsistent definitions of euthanasia and other medical decisions at the end of life; lack of information about non-responders to surveys; and lack of validation. Doubts have also been expressed about the representativeness of the cohorts sampled. Despite these qualifications, general trends have emerged: there is majority community support for euthanasia or physician-assisted suicide9,10 and for legislation to allow these practices.9 However, the converse is true for the majority of the medical profession.8,9 Despite this medical disapproval, there is evidence that euthanasia and physician-assisted suicide are practised by some Australian doctors.5-7 Similar findings have been reported in the United Kingdom.11 However, these surveys give no quantitative indication of the extent of these practices in Australia. In this issue of the Journal, Kuhse and her colleagues report such data, obtained by an adaptation of the methods used to determine these practices in the Netherlands.12,13 In the Netherlands, euthanasia and physician-assisted suicide have been accepted for over 20 years. While these practices are illegal, and punishable by imprisonment -- 12 years for euthanasia and 3 years for physician-assisted suicide -- they are condoned by strong public support and have a legal basis in the force majeure, whereby the doctor must act.14 Dutch doctors can be reasonably sure that they will not be prosecuted if they follow the guidelines for the practice of euthanasia issued in 1984 by the Royal Dutch Medical Association and endorsed by the Dutch Government.14 End-of-life medical decisions in the Netherlands have been scrutinised by two government-initiated surveys, one in 1990,12 and the other in 1995.13 The latter survey conducted two separate studies: one based on interviews of a stratified sample of doctors, and the other on responses to questionnaires mailed to physicians identified on death certificates of about 6000 deaths (in the Netherlands, for all deaths the cause must be reported on a uniform death certificate, forwarded to a central authority -- Statistics Netherlands). In the study of Kuhse et al. an English version of the Dutch questionnaire was forwarded to 3000 Australian doctors, stratified to mimic the broad categories of doctors in the Dutch study. The categories and definitions of end-of-life medical decisions in both studies were identical. A broad overview of the outcomes of the Australian and Dutch studies is of interest. Kuhse et al. report that end-of-life medical decisions were made in approximately 65% of deaths in Australia (corresponding Dutch 1995 estimate, 42%). The estimated Australian incidences for specific end-of-life medical decisions in 1995 were: euthanasia, 1.7% (corresponding Dutch 1995 estimate, 2.4%); physician-assisted suicide, 0.1% (0.2%); ending of life without the patient's explicit request, 3.5% (0.7%); alleviation of pain and symptoms with opioids, with probable life-shortening effects, 30.9% (19.1%); and decisions to forgo treatment, 28.6% (20.2%). The estimated time (days) by which life was shortened by end-of-life medical decisions was comparable in the two studies. How does the Australian and Dutch experience compare with that in other developed industrialised countries? In the United States, euthanasia and physician-assisted suicide are illegal. However, the US Supreme Court will decide later this year whether to uphold the decisions of two US Courts of Appeals to permit doctors to help terminally ill patients commit suicide.15 In a recent survey of physicians in the State of Washington,16 12% said that they had been asked in the last 12 months to assist suicide and 4% had been asked to perform euthanasia; physicians had complied with a quarter of the euthanasia requests, giving a percentage for euthanasia comparable with that found by Kuhse et al. in Australia. The American Hospital Association has estimated that about 70% of US hospital deaths occur after decisions to forgo treatment,17 but there are no readily retrievable US data on how often the use of opioids for symptom relief in terminally ill patients has hastened death. Will the report by Kuhse et al. influence the anti- and pro-euthanasia positions in Australia? Considering the intransigent attitudes of both groups, this seems unlikely. Those who support euthanasia will argue that the findings of Kuhse et al. of the practice of both euthanasia and physician-assisted suicide, and their large estimate for the number of patients for whom end-of-life medical decisions were made without an explicit patient request (albeit more than 50% were mentally not competent), warrant the development of guidelines, and independent audits to assure compliance. Legislation for euthanasia is the best way to ensure this. Moreover, removal of a legal threat by decriminalisation will also remove the need for anonymity and allow an open review of practices. Proponents will further argue that the longitudinal data from the 1990 and 1995 Dutch studies indicate that fears about the "slippery slope" (such as voluntary euthanasia leading to non-voluntary euthanasia) are not justified. For the proponents of euthanasia the Australian estimates for end-of-life medical decisions, other than for euthanasia and physician-assisted suicide, will represent experiences in which patients are presumed to have endured pain and suffering, and which, out of respect for autonomy and compassion, they should be able to relieve by choosing euthanasia. For many supporters of euthanasia and physician-assisted suicide, the distinction between euthanasia and refusal of treatment, or the use of palliative treatments that may hasten death, is logically, philosophically and morally ambiguous. These "moral-equivalence" arguments have been challenged (see Ashby, this issue of Journal). For opponents of euthanasia the findings of Kuhse et al. will be seen as potent reasons for enhancing access to, and quality of, palliative-hospice care and mental health services in Australia. For many, the findings of both the Australian and Dutch studies will not extinguish fears of the "slippery slope", at the end of which are loss of the sanctity of life, a broadening of the criteria for euthanasia, and a change in the values of society and the ethos of medicine. For others, the study findings will highlight the complexities of clinical decisions and circumstances, which, in themselves, have been neglected in the euthanasia debate in the medical, legal and ethical arenas; the law and ethics cannot operate in a vacuum. The opponents of euthanasia will argue that, although they respect patient autonomy, this cannot be divorced from the intricacies of the patient-doctor relationship, or, for that matter, the patient-family and other important relationships. Finally, despite the findings of Kuhse et al., opponents of euthanasia legislation will argue that the law lacks the sensitivity and compassion required to deal with such a complex event as dying, and that intrusion of the law into this area will have unforeseen consequences. For the neutralists in the euthanasia debate, the findings of Kuhse et al. will emphasise how little is known about how and where people die in Australia. They will say the results underscore the inadequacies of training programs for the care of the dying, and draw attention to the complexities and vicissitudes of the communications between patients and doctors. Finally, they will call for programs that both explore the issues of death and dying, and ensure that the circumstances of this inevitable event are compassionate and humane. Martin B Van Der Weyden Editor, The Medical Journal of Australia Sydney, NSW Ryan CJ, Kaye M. Euthanasia in Australia -- the Northern Territory Rights of the Terminally Ill Act. N Engl J Med 1996; 334: 326-328. Australian Medical Association Position Statement on Care of Severely and Terminally Ill Patients. Canberra: AMA, May 1996. Australian Association for Hospice and Palliative Care. Voluntary active euthanasia -- position statement. Perth: AAHPC, October 1995. High Court defers to MPs on euthanasia. The Weekend Australian 1996; Nov 16: 9. Kuhse H, Singer P. Doctors' practices and attitudes regarding voluntary euthanasia. Med J Aust 1988; 148: 623-627. Baume P, O'Malley E. Euthanasia: attitudes and practices of medical practitioners. Med J Aust 1994; 161: 137-144. Stevens CA, Hassan R. Management of death dying and euthanasia: attitudes and practices of medical practitioners in South Australia. J Med Ethics 1994; 20: 41-46. Waddell C, Clarnette RM, Smith M, et al. Treatment decision-making at the end of life: a survey of Australian doctors' attitudes towards patients' wishes and euthanasia. Med J Aust 1996; 165: 540-544. Steinberg MA, Najman JM, Cartwright CM, et al. End-of-life decision making: community and medical practitioners' perspectives. Med J Aust 1997; 166: 131-135. Vote life death choice. The Bulletin 1996; Sep 17: 18-22. Ward BJ, Tate PA. Attitudes among NHS doctors to requests for euthanasia. BMJ 1994; 308: 1332-1334. van der Maas PJ, Van Delden JJM, Pijnenborg L, Looman CWN. Euthanasia and other medical decisions concerning the end of life. Lancet 1991; 338: 669-674. van der Maas PJ, van der Wal G, Haverkate I, et al. Euthanasia, physician-assisted suicide, and other practices involving the end of life in the Netherlands, 1990-1995. N Engl J Med 1996; 335: 1699-1705. van der Wal G, Dillmann RJM. Euthanasia in the Netherlands. BMJ 1994; 308: 1346-1349. Angell M. The Supreme Court and physician-assisted suicide -- the ultimate right. N Engl J Med 1997; 336: 50-53. Back AL, Wallace JI, Starks HE, Pearlman RA. Physician assisted suicide and euthanasia in Washington state: patients requests and physicians responses. JAMA 1996; 275: 919-925. Brief of the American Hospital Association as amicus curiae in support of petitioner Nancy Beth Cruzan, Lester L and Joyce Cruzan. Chicago: American Hospital Association, 1 September 1989. - - - To top of article - ©MJA 1997 <URL: http://www.mja.com.au/> © 1997 Medical Journal of Australia.

The fallacies of death causation in palliative care While the debate about euthanasia continues, society should focus more on palliative care which is clinically safe and ethically sound MJA 1997; 166: 176 Readers may print a single copy for personal use. No further reproduction or distribution of the articles should proceed without the permission of the publisher. For permission, contact the Australasian Medical Publishing Company Journalists are welcome to write news stories based on what they read here, but should acknowledge their source as "an article published on the Internet by The Medical Journal of Australia <http://www.mja.com.au/>". - - - ©MJA1997 The most important thing is promoting the comfort, dignity and autonomy of people who are dying In studies which generated the first data on the incidence of euthanasia in the Netherlands,1-3 the practice was categorised as a type of "medical decision at the end of life", defined as: "all decisions by physicians concerning courses of action aimed at hastening the end of life of the patient or courses of action for which the physician takes into account the probability that the end of life of the patient is hastened." Two other categories which van der Maas and colleagues created were the administration of "high" doses of opiates that "almost certainly would shorten the life of the patient" and decisions in which "life-prolonging" treatment was withheld or withdrawn.4 In this issue of the Journal, Kuhse et al. report the results of their Australian study based on the approach taken by these studies. One line of argument advanced by those in favour of legalising euthanasia is to suggest that if doctors already cause (or hasten) death by stopping "active" treatment or by palliative interventions, such as the use of escalating morphine doses for pain control, they should not object to the administration of a lethal injection or the supply of the means to commit suicide at the explicit request of a terminally ill patient. By demonstrating a high incidence of so-called "medical decisions at the end of life" which are argued to cause death (approximately 65% of deaths in the study by Kuhse et al.), advocates of the legalisation of voluntary active euthanasia presumably hope to show that existing medical practice is inconsistent in both its principles and processes. There are two major false premises which need to be challenged. Firstly, it is a common belief, and the basis of a considerable body of legal and legislative opinion, that the dose of morphine (or other opioid) per se is the main determinant of whether the drug causes or hastens death.5 In fact, there is no such determinative dose. What matters is the relationship of a dose to the previous dose. In pain management gradual dose escalation by 50%-100% of the previous dose is usual practice, although substantially higher increases can usually be well tolerated by patients who are not new to the drug. It is therefore the size of the initial dose, and the rate of subsequent increases, which are important. Unlike most other forms of drug treatment, there are no predetermined dose ranges of morphine for achieving satisfactory control of cancer pain. Therefore, treatment has to be skilfully adjusted on an individual basis. For most adults a daily dose in the range 30-200 mg, orally, will achieve initial pain control. The accepted practice, used safely for at least 20 years, is to adjust the regular dose (usually) upwards according to the requirements to keep the pain under control, balanced against the occurrence of side effects. Many doctors still believe that they are causing or hastening the death of patients by this process, despite an extensive and sustained international campaign by the World Health Organization and a lack of any evidence to support this view. Like any drug, morphine is dangerous if used without clinical skill. Appropriate opioid use is surrounded by myths and fears among both the general public and health care professionals, appearing to be largely attributable to the history and non-medical use of this class of drugs.6 Secondly, surely nobody benefits from lines of argument which equate the cessation of treatment or decisions not to treat when a person is dying (even if treatment is potentially life-prolonging) with giving a lethal injection to end a life. "Moral-equivalence" arguments based on outcome cannot ignore the assessment of clinical proportionality and appropriateness. Although Keyserlingk has argued against overemphasis on "but-for" causality in this debate,7 the death is surely caused only if the treatment can be demonstrated to be clinically effective in the circumstances, and the underlying condition is potentially reversible (i.e., there is a disruption of a pre-existing chain of causation).8 For a competent patient who expresses a wish to reject any medical treatment whatsoever, this has been clearly accepted as morally and legally permissible, and the issue is not controversial. While van der Maas et al.9 and Kuhse et al. are right to draw attention to situations in which patients were not consulted about medical decisions, treatment abatement cannot be negotiated with incompetent dying people. Unfortunately, incompetence due to organic brain dysfunction is fairly common during the dying process and medical decisions do have to be taken.10 Although the Australian doctors in the report by Kuhse and colleagues may be reflecting a degree of honest pragmatism, this finding clearly needs more exploration -- with particular emphasis on the transparency of process, negotiation and consultation. Kuhse et al. state that death was the "partly or explicitly" intended outcome of a medical decision to end life in 36.5% of all Australian deaths. While they attempted to ascertain intention, neither their study nor the Dutch studies validate the doctors' responses by examining clinical data and prescription records. In the absence of formal training in palliative care -- a relatively recent advent in most medical schools -- doctors' attitudes and clinical behaviour are complex and variable. They range from abrupt cessation of treatment, minimalist palliative care and treatment directed at bringing about a rapid dying process, to excessive caution about being seen to be instrumental in causing the death, particularly with regard to providing pain and symptom relief, withdrawal or non-initiation of artificial hydration and alimentation, and cardiopulmonary resuscitation.11 While academic study in this area is essential and welcome, neither reliance on empirical research12 (despite its attractiveness to doctors and policymakers) nor the generation of increasingly ingenious ethical or legal arguments will resolve the issue of euthanasia. The debate has become stagnant, circular and divisive and it distracts our society from the on-going task of improving care and decision-making at the end of life. The most important thing is promoting the comfort, dignity and autonomy of people who are dying. Divergence about whether third-party assistance (medical or non-medical) to die is permissible reveals a deep and complex fault line in modern Western democracies, as they chart their courses based more on individual conceptions of liberty and autonomy than those of organised religion and deontological codes.13 This process is ongoing and resolution will not come easily. Society's energy should be more focused on palliative care, about which we can nearly all agree, and where modest investments have yielded excellent results for patients and families by improving care and decision-making at the end of life. There is much still to do. Euthanasia should be narrowly defined as "the deliberate action to terminate life by someone other than, and at the request of, the patient concerned",14 which is the matter at stake in the on-going societal debate. The Australian public need to have complete confidence that there is a safe and morally sound body of modern palliative care practice which is clearly and unambiguously distinguished from euthanasia. Palliative care practitioners are confident to give this re assurance. Michael Ashby Professor of Palliative Care, Monash University, Melbourne, VIC. van der Maas PJ, van Delden JJM, Pijnenborg L, Looman CWN. Euthanasia and other medical decisions conerning the end of life. Lancet 1991; 338: 669-674. Pijneneborg L, van Delden JM, Karduan WPF, et al. Nationwide study of decisions concerning the end of life in general practice in the Netherlands. BMJ 1994; 309: 1209-1212. van der Maas PJ, van der Waal G, Haverkate I, et al. Euthanasia, physician-assisted suicide, and other practices involving the end of life in the Netherlands, 1990-1995. N Engl J Med 1996; 335: 1699-1705. van der Maas PJ, van Delden JJM, Pijnenborg L. Euthanasia and other medical decisions at the end of life. Amsterdam: Elsevier, 1992. Ashby M. Hard cases, causation and care of the dying. J Law Med 1995; 3: 152-160. Reidenberg MM. Barriers to controlling pain in patients with cancer. Lancet 1996; 347: 1278. Keyserlingk EW. Assisted suicide, causality and the Supreme Court of Canada. McGill Law J 1994; 39: 708-718. Consent to Medical Treatment and Palliative Care Act 1995 (South Australia). Division 2 -- the care of people who are dying. Pijneneborg L, van der Maas PJ, van Delden JJM, Looman CWN. Life terminating acts without explicit request of patient. Lancet 1993; 341: 1196-1199. Bruera E, Miller L, McCallion J, et al. Cognitive failure in patients with terminal cancer: a prospective study. J Pain Symptom Manage 1992; 7: 192-195. Waddell C, Clarnette RM, Smith M, et al. Treatment decision-making at the end of life: a survey of Australian doctors' attitudes towards patients' wishes and euthanasia. Med J Aust 1996; 165: 540-544. Pellegrino ED. The limitation of empirical research in ethics. J Clin Ethics 1995; 6: 161-162. Somerville M. "Death talk in Canada: the Rodriguez case". McGill Law J 1994; 39: 602-617. Australian Association for Hospice and Palliative Care. Voluntary Active Euthanasia -- Position Statement, 27th October 1995. Perth: The Association, 1995. To top of article - ©MJA 1997 <URL: http://www.mja.com.au/> © 1997 Medical Journal of Australia.

Michael Ashby

End-of-life decisions in Australian medical practice Helga Kuhse, Peter Singer, Peter Baume, Malcolm Clark and Maurice Rickard MJA 1997; 166: 191 For editorial comment see Van Der Weyden and Ashby Readers may print a single copy for personal use. No further reproduction or distribution of the articles should proceed without the permission of the publisher. For permission, contact the Australasian Medical Publishing Company Journalists are welcome to write news stories based on what they read here, but should acknowledge their source as "an article published on the Internet by The Medical Journal of Australia <http://www.mja.com.au/>". Abstract - Introduction - Methods - Results - Discussion - Acknowledgement - References - Authors' details - - - ©MJA1997 Abstract Objective: To estimate the proportion of medical end-of-life decisions in Australia, describe the characteristics of such decisions and compare these data with medical end-of-life decisions in the Netherlands, where euthanasia is openly practised. Design: Postal survey, conducted between May and July 1996, using a self-administered questionnaire based on the questionnaire used to determine medical end-of-life decisions in the Netherlands in 1995. Participants: A random sample of active medical practitioners from all Australian States and Territories selected from medical disciplines in which there were opportunities to be the attending doctor at non-acute patient deaths, and hence to make medical end-of-life decisions. Main outcome measure: Proportion of Australian deaths that involved a medical end-of-life decision, using ratio-to-size estimation based on the sampled doctors' responses to the questionnaire. The response rate was 64%. Results: The proportion of all Australian deaths that involved a medical end-of-life decision were: euthanasia, 1.8% (including physician-assisted suicide, 0.1%); ending of patient's life without patient's concurrent explicit request, 3.5%; withholding or withdrawing of potentially life-prolonging treatment, 28.6%; alleviation of pain with opioids in doses large enough that there was a probable life-shortening effect, 30.9%. In 30% of all Australian deaths, a medical end-of-life decision was made with the explicit intention of ending the patient's life, of which 4% were in response to a direct request from the patient. Overall, Australia had a higher rate of intentional ending of life without the patient's request than the Netherlands. Conclusions: Australian law has not prevented doctors from practising euthanasia or making medical end-of-life decisions explicitly intended to hasten the patient's death without the patient's request. MJA 1997; 166: 191-196 Introduction In Australia, the practice of euthanasia or physician-assisted suicide (Box 1) is unlawful, except in the Northern Territory. It is, however, widely recognised in common law (in some Australian States and Territories in statute law) that mentally competent patients have a right to refuse medical treatment, and that doctors who comply with a patient's request for non-treatment are not generally deemed to have acted unlawfully or to have practised euthanasia or physician-assisted suicide, even if their action or omission was foreseen to lead to the patient's death. Before the Northern Territory Rights of the Terminally Ill Act 1995, the only country where doctors could openly practise euthanasia was the Netherlands. Although this practice is subject to criminal law in the Netherlands, it has been long accepted by strong public support, and the Dutch Parliament has recognised that doctors practising it should not be prosecuted if they comply with certain guidelines.1,2 In 1990, the Dutch Government appointed the Remmelink Commission to review the nationwide practice of euthanasia and other end-of-life medical practices. The investigators used three different methods to ascertain the incidence of these practices. In order to facilitate comparisons with our study, we summarise the findings of their questionnaire study.3 Of all deaths in the Netherlands in 1990 (approximately 129 000), 1.7% were the result of euthanasia and 0.2% were the result of physician-assisted suicide; these deaths complied with Royal Dutch Medical Association guidelines on euthanasia. However, in a clear violation of the guidelines, 1000 deaths (0.8%) involved the administration of drugs with the explicit intention of ending the patient's life, but without the patient's explicit request. In a second nationwide study of medical end-of-life practices in the Netherlands in 1995, by van der Maas et al.,4 the corresponding findings were: euthanasia, 2.3%; physician-assisted suicide, 0.2%; and ending of life without the explicit concurrent request of the patient, 0.7%. Although recent Australian surveys have reported on doctors' attitudes about medical end-of-life decisions,5 and doctors' attitudes to and practice of voluntary euthanasia,6,7 no study has examined the number of deaths in Australia involving medical end-of-life decisions. In this study, we sought to estimate the number of deaths involving a medical end-of-life decision in Australia, to describe the characteristics of such decisions, and to compare these data with those of the Dutch studies. A comparison of medical end-of-life decisions in the Netherlands with a country where euthanasia cannot be practised openly, such as Australia, would indicate whether the Netherlands has a higher rate of ending of life without the patient's explicit request. Australia and the Netherlands have a similar population size (18 million and 15.3 million, respectively) and comparable annual death rates (7.1 and 8.7 per thousand, respectively).8 In the Netherlands in 1995 there were 135 546 deaths,3 while in Australia there were 125 771 deaths from July 1994 to June 1995.9 Methods Ethical approval Ethical approval for this study was obtained from the Monash University Standing Committee on Ethics in Research on Humans. Questionnaire We used an English version of the retrospective questionnaire used by van der Maas et al.4 Our questionnaire was based on an authoritative translation provided by the Dutch researchers, so the terminology and meanings of the questions were comparable, and contained the original 24 items used in their survey. We considered anonymity to be essential because we were seeking information about conduct for which doctors would be liable to prosecution. Therefore, unlike the study by van der Maas et al.,4 we did not conduct interviews. Grouping euthanasia and physician-assisted suicide together, our questionnaire addressed all medical end-of-life decisions, as defined in Box 1. The questionnaire examined the medical action that preceded the death, the doctor's intention, whether an explicit request from the patient was involved, whether a wish had been expressed to hasten death, whether discussion took place with the patient or others, whether the patient was competent when making the request or when participating in discussions, and the estimated length of life shortened. Most questionnaires were completed carefully and consistently. (Copies of the questionnaire are available from the authors.) Medical practitioner sample We received the addresses of 3000 doctors taken at random from a list of 27000 Australian doctors that had been extracted from the Australian Medical Masterfile Database (Australasian Medical Publishing Company, Sydney). Each doctor on the list belonged to one of 27 medical disciplines where there would be the possibility of making a medical end-of-life decision (i.e., being the attending doctor at a non-acute death) (Box 2). The sample of doctors in the study by van der Maas et al.4 consisted of those who had attended deaths where the cause of death was highly likely to have involved making a medical end-of-life decision (as determined from death certificates). Australia does not have a national Death Certificate Register for identifying causes of death and attending doctors, as in the Netherlands. Therefore, the 27 medical disciplines (also extracted from the Australian Medical Masterfile Database) in our study were chosen to be as comparable as possible with the broader categories of doctors (cardiology, surgery, internal medicine, respiratory medicine [pulmonology], neurology, general practitioners and nursing home physicians) who were attendant to 87% of hospital deaths and nearly all deaths outside hospitals in the Netherlands.4 Between May 1996 and July 1996, we sent questionnaires to the random sample of 3000 doctors in the selected medical disciplines. The sampling method was chosen to reflect the wider distribution of doctors in Australia with regard to sex, age, medical discipline and State or Territory of residence. The response rate, after a second mailing to non-respondents, was 1918 questionnaires (64%). The initial questions on the questionnaire narrowed the field of respondents to include the 1361 doctors who had attended a death within the last 12 months. These doctors were asked to recall the most recent death they had attended during that period. The field was further narrowed by excluding doctors who, in respect of that death, had had no contact with the patient until after death or where the death had been sudden and totally unexpected. Of the remaining field of 1112 doctors who had attended a death where there was an opportunity to make a medical end-of-life decision (i.e., a non-acute death), 800 doctors made a decision intended either to shorten life or foreseen as probably or certainly shortening life, and 312 doctors did not make such a decision. Statistical analysis The percentages and confidence intervals regarding doctors were computed using standard formulas for the estimation of proportions under simple random sampling.10 The sampling scheme regarding deaths was equivalent to two-stage cluster sampling. Each selected doctor was asked for details regarding only the most recent death he or she had attended in the past 12 months. Thus, the percentages of deaths and corresponding confidence intervals were computed using the usual ratio-to-size estimator for such sampling.10,11 The virtue of the ratio-to-size estimator was that it could take into account differences in the rates of death that the different doctors in our sample attended in the normal course of their duties (each doctor was asked to indicate the number of deaths they would attend on average within a certain period). For example, oncologists and general practitioners in our sample were each asked about only one death, but the differences in the number of deaths they normally attend were taken into account by the ratio-to-size method when extra polated to percentages of Australian deaths. Surveyed doctors' responses were weighted in these statistical extrapolations in proportion to the number of deaths they normally attend. A consequence of the differential weightings involved in the ratio-to-size method, however, is that there is no simple way of deriving the proportion of deaths in Australia that were preceded by a medical end-of-life decision from our sample of doctors who reported on their decision with regard to the most recent death they had attended. Furthermore, the confidence intervals take into account possible differences in attitudes towards end-of-life decisions between doctors and the fact that each respondent was asked about only one death. Results Survey response rates From the 3000 doctors who were sent questionnaires, we received responses from 1918 doctors (64%). There was no significant difference in response rate for men versus women (chi-squared test, 3.03; 1 degree of freedom [df]), nor between the States and Territories (chi-squared test, 1.94; 7 df). The response rate did, however, differ significantly with age, ranging from 74.9% for the under-35 years age group to 50.5% for the 56-65 years age group (chi-squared test, 26.73; 4 df). The response rate also differed significantly between different categories of medical discipline: there was a higher response rate from doctors in Groups A and B (116 and 340 doctors, respectively), and a lower response rate from doctors in Group C (1265 doctors) (chi-squared test, 160.4; 2 df). One hundred and ninety-seven doctors either did not state their medical discipline or indicated that it did not fall into one of these groups. (Further data on respondents' medical discipline, age, sex and State or Territory of residence are available from the authors.) Medical end-of-life decisions: medical practitioner sample Box 3 shows the characteristics of the deaths reported by the 800 doctors in our study who made medical end-of-life decisions. There were no significant differences with regard to sex (chi-squared test, 0.94; 1 df), State or Territory of residence (chi-squared test, 1.07; 7 df) or medical discipline (chi-squared test, 4.06; 3 df) between the 800 doctors who made medical end-of-life decisions and the 312 who did not make such a decision. There was, however, a marginally significant difference in the age distribution (chi-squared test, 11.50; 4 df; P=0.02). There was a higher than expected number of doctors aged between 56-65 years who did not make such a decision. The medical end-of-life decisions reported by the 800 doctors were as follows: 26 doctors (3.2%) reported euthanasia; 51 doctors (6.4%) reported ending the patient's life without the patient's explicit request; 289 doctors (36.1%) reported making a decision not to treat, of which 55 doctors (19%) reported no intention to hasten death, and 234 doctors (81%) reported an explicit intention to hasten death; and 434 doctors (54.2%) reported alleviating the patient's pain with opioids in large doses, of which 335 doctors (77.2%) reported no intention to hasten death, and 99 doctors (22.8%) reported a partial intention to hasten death (Box 3). We are planning to publish further analysis of the data at a later date. Medical end-of-life decisions: proportions of Australian deaths Box 4 shows the proportion of Australian deaths (acute and non-acute) that involved a medical end-of-life decision. The results in Box 4 and the results discussed below are based on an extrapolation of the data from Box 3 by means of ratio-to-size estimation (see Methods). A medical decision either partly or explicitly intended to hasten death or not prolong life occurred in 36.5% (±3.5%) of all Australian deaths. In almost half (17.8% [±2.9%]), there had been no explicit request from the patient, nor had there been any discussion of ending the patient's life, and the doctor did not believe that the patient had expressed a wish for death to be hastened. Euthanasia and physician-assisted suicide An estimated 1.8% (±0.6%) of all Australian deaths were the result of euthanasia or physician-assisted suicide (of which an estimated 0.1% were cases of physician-assisted suicide). Ending of life without an explicit request from the patient An estimated 3.5% (±0.8%) of all Australian deaths involved termination of the patient's life without the patient's explicit request. There was some discussion with the patient -- although not an explicit request for death to be hastened -- in 38% of these cases. In virtually all of the remaining cases, the doctor did not consider the patient competent (i.e., capable of assessing his or her situation and making a decision about it). In 0.7% of all Australian deaths, attending doctors (who were asked to give as many reasons as applied) stated that they did not discuss with the patient the possible hastening of death by prescribing, supplying or administering drugs because the patient was unconscious, demented or mentally handicapped. In 0.5% of all Australian deaths, attending doctors felt that the act of hastening death was "clearly the best one for the patient", or that "discussion would have done more harm than good". Decisions not to treat An estimated 24.7% (±3.1%) of all Australian deaths involved a decision not to treat with the explicit intention of not prolonging life or of hastening death. Of these, less than one-tenth (or 2.2% of all Australian deaths) were in response to an explicit request from the patient, and in most cases (22.5% of all Australian deaths) there was no explicit request from the patient. In 3.2% of all deaths, the doctor believed that the patient had expressed a wish for death to be hastened, but there had been no discussion with the patient, and in 5% respondents did not indicate whether the patient was involved in the decision. Therefore, in 14.3% (±2.8%) of all Australian deaths, the death was preceded by a medical decision to withhold or withdraw treatment with the explicit intention of not prolonging life or of hastening death, despite the fact that the decision was not based on an explicit request from a patient, there was no discussion with the patient about whether to hasten death by the omission of treatment, and the doctor did not believe that the patient had expressed a wish for death to be hastened. In almost all of these cases (14.1% of all deaths) the doctor did not consider the patient capable of assessing his or her situation and making a decision about it. In 0.16% of all Australian deaths, the doctor did consider the patient capable of assessing his or her situation and making a decision about it, but intentionally hastened death by forgoing treatment, without discussing this with the patient. In 10.5% (±2.7%) of all Australian deaths, attending doctors (who were asked to give as many reasons as applied) stated that they did not discuss with the patient the possible hastening of death by withholding or withdrawing treatment because the patient was unconscious. Dementia or mental handicap was offered as the reason in 2.6% of all Australian deaths. In 1.6% of all Australian deaths, the attending doctor felt that the decision "was clearly the best one for the patient" or "discussion would have done more harm than good". Alleviation of pain and/or symptoms with opioids In 6.5% (±1.1%) of all Australian deaths, doctors prescribed opioids (morphine or a comparable drug) with a dual intention: in part, to alleviate pain and symptoms and, in part, to hasten death. Drug doses were large enough to have, in the judgement of the respondent and with regard to the particular death, a life-shortening effect. In 0.9% of all Australian deaths, doctors had partly intended to hasten death by alleviating pain and/or symptoms using opioids on the basis of an explicit request; and in 3.2% there was either some discussion with the patient, or the doctor believed that the patient had expressed a wish (but not an explicit request) for death to be hastened. In 2.4% of all deaths, doctors had partly intended to hasten death by this practice, despite the fact that there was no explicit request, no discussion with the patient, and the doctor did not believe that the patient had expressed a wish for death to be hastened. Amount of time by which life was shortened Medical decisions that were explicitly or partly intended to hasten death or not prolong life generally brought death forward by relatively short periods, according to doctors' estimates. Of the 24.7% (±3.1%) of all Australian deaths that involved a decision to forgo treatment with the explicit intention of hastening death or not prolonging life, the decision was estimated to hasten death by more than a week in 3.6% of all Australian deaths. Of the 5.3% of all Australian deaths that were caused by the prescription, supply or administration of drugs explicitly intended to hasten death, life was estimated to have been shortened by more than a week in 1.1% of all Australian deaths. Discussion One of the main findings of our study was that 30% (±3.3%) of all Australian deaths were preceded by a medical decision explicitly intended to hasten the patient's death: doctors prescribed, supplied or administered drugs with the explicit intention of ending the patient's life in 5.3% (±1%) of these deaths, and withdrew or withheld life-prolonging treatment with the explicit intention of not prolonging life or of hastening death in 24.7% (±3.1%) of these deaths. Our study shows that Australia had a significantly higher rate of intentional ending of life without the patient's consent, both through the administration of drugs and by withholding or withdrawing treatment, than the Netherlands. Overall, 36.5% (±3.5%) of all Australian deaths involved a medical decision either partly or explicitly intended to hasten death or not prolong life, compared with 19.5% of deaths in the Netherlands.4 Further comparisons with the data from the Netherlands are shown in Box 5. The difference in the rates of euthanasia between the two countries was not statistically significant. However, the rates of intentionally ending life without an explicit request from the patient were significantly higher in Australia than in the Netherlands (P < 0.0001). In 22.5% (±3.1%) of all Australian deaths, doctors withheld or withdrew treatment from patients, without the patient's explicit request, with the explicit intention of ending life. No comparable 1995 figure for the Netherlands was available (the 1991 figure was 5.3%), but the 1995 figure for all decisions to forgo treatment with an explicit intention of hastening death or not prolonging life in the Netherlands was 13.3%.4 If we classify euthanasia as all cases in which death is "intentionally accelerated by a doctor,"12 30% of all Australian deaths (or 37000 cases) would be cases of euthanasia. The comparable 1995 figure for the Netherlands was 16.6%. The response rate of 64% to our questionnaire was adequate to give a broad picture of medical end-of-life decisions in Australia, but all postal surveys are subject to some degree of non-response bias. The validity of our observations and comparisons is limited by the degree to which our study can be compared with the studies from the Netherlands. Although we strove to obtain a sample population of Australian doctors as comparable as possible to the sample in the study by van der Maas et al.,4 the 27 medical disciplines we selected may not have matched exactly the groups of doctors in their study. Furthermore, in our study there was a higher response rate from doctors whose medical discipline belonged to Groups A and B, and a lower response rate from those in Group C (Box 2). An analysis of the responses of doctors in each of these categories indicates that, in so far as this response bias had any effect on our results, this effect would have been to reduce the reported rate of euthanasia and ending of a patient's life without an explicit request. Cultural differences between Australia and the Netherlands could have accounted for some of the differing responses to the questionnaire. In the Netherlands, the community has a different relationship with primary care doctors compared with Australians, which may account for some of the differences in results. In the Netherlands, most primary care is provided by the huisarts ("home doctor"), the general practitioner or family doctor, either in the patient's home or in the doctor's home surgery. All Dutch patients have a personal huisart, who usually serves a practice of about 2300 people, lives in the area and makes frequent house calls when a patient is ill. This allows for close and enduring contact between the doctor and the patient, and distinguishes the delivery of primary care in the Netherlands from the increasingly institutionalised delivery of primary care in Australia. However, our study undermines suggestions that the rate at which doctors intentionally end patients' lives without an explicit request is higher in a country where euthanasia is practised openly (the Netherlands) than in a comparable country which has not allowed euthanasia to be practised openly, such as Australia. Although Australian law recognises a right to refuse treatment, it generally prohibits the intentional termination of life, whether by act or omission.13 Our findings, together with the previously cited studies of doctors in Victoria and New South Wales,6,7 suggest that Australian law has not prevented the practice of euthanasia or the intentional ending of life without the patient's consent. Our study shows that, while 30% (±3.3%) of all Australian deaths were preceded by an action or omission explicitly intended to end the patient's life, in only 4% was the decision taken in response to an explicit request from the patient. Far more doctors in our sample intentionally hastened death by forgoing (withholding or withdrawing) treatment than by prescribing, supplying or administering drugs with the explicit intention of ending life. For the purposes of this comparative study, we used the same narrow definition of euthanasia (the administration of drugs with the explicit intention of ending the patient's life, at the patient's request) that was used by van der Maas et al.4 Traditionally, "euthanasia" has been defined more broadly: "an action or an omission which of itself or by intention causes death, in order that all suffering may in this way be eliminated."14 This study suggests that the contemporary focus on euthanasia in the narrow sense may be too limited, at least if the aim is to prevent patients having their lives shortened by medical end-of-life decisions being made without their consent. Our study raises the question of why some Australian doctors choose intentionally to end the lives of some of their patients without the patients' consent, especially in situations where the patient is competent and could be consulted. While this issue remains the subject of further empirical research, it may be that, because existing laws prohibit the intentional termination of life, doctors are reluctant to discuss medical end-of-life decisions with their patients lest these decisions be construed as collaboration in euthanasia or in the intentional termination of life. Acknowledgement This study was supported by a grant from the National Health and Medical Research Council. Responsibility for the views expressed is that of the authors alone. References The Royal Dutch Medical Association issues revised guidelines on euthanasia. Int Digest Health Legislation 1996; 47: 401-405. van der Wal G, Dillmann RJM. Euthanasia in the Netherlands. BMJ 1994; 308: 1346-1349. van der Maas PJ, van Delden JJM, Pijnenborg L. Euthanasia and other medical decisions concerning the end of life. Lancet 1991; 338: 669-674. van der Maas PJ, van der Wal, Haverkate I, et al. Euthanasia, physician-assisted suicide, and other medical practices involvingthe end of life in the Netherlands, 1990-1995. N Engl J Med 1996; 335: 1699-1705. Waddell C, Clarnette RM, Smith M, et al. Treatment decision-making at the end of life: a survey of Australian doctors' attitudes towards patients' wishes and euthanasia. Med J Aust 1996; 165: 540-544. Kuhse H, Singer P. Doctors' practices and attitudes regarding voluntary euthanasia. Med J Aust 1988; 148: 623-627. Baume P, O'Malley E. Euthanasia: attitudes and practices of medical practitioners. Med J Aust 1994; 161: 137-144. Encyclopaedia Britannica 1996 Year Book. Chicago: Encyclopaedia Britannica, Inc. 1996: 554, 679. Australian Bureau of Statistics. Australian Demographic Statistics, June 1996. Canberra: AGPS, Cat. No. 3101.0. Cochran WG. Sampling techniques. 2nd edition. New York: Wiley, 1963: section 3.2, 11.6: 49-52, 300-303. Scheaffer RL, Mendenhall W, Ott L (editors). Elementary survey sampling. 4th edition. Boston: PWS-Kent, 1990, section 9.5: 294-296. Keown J. Euthanasia in the Netherlands: sliding down the slippery slope? In: Keown J, editor. Euthanasia examined: ethical, clinical and legal perspectives. Cambridge: Cambridge University Press, 1995: 261-296. Crimes Act 1900 (NSW), s. 19(1)(a). Sacred Congregation for the Doctrine of the Faith: Declaration on Euthanasia, Vatican City, 1980: 6. (Received 20 Dec 1996, accepted 22 Jan 1997) Authors' details Centre for Human Bioethics, Monash University, Clayton, VIC. Helga Kuhse, PhD, Director; Peter Singer, FAHA, FASSA, Deputy Director; Maurice Rickard, PhD, NHMRC Research Officer. School of Community Medicine, University of New South Wales, Sydney, NSW. Peter Baume, MD, FAFPHN, Professor. Department of Mathematics, Monash University, Clayton, VIC. Malcolm Clark, PhD, Senior Lecturer. No reprints will be available from the author. Correspondence: Associate Professor H Kuhse, Centre for Human Bioethics, Monash University, Clayton, VIC 3168. E-mail: helga.kuhse AT arts.monash.edu.au - - - To top of article - ©MJA 1997 <URL: http://www.mja.com.au/> © 1997 Medical Journal of Australia. 1: Definitions of medical end-of-life decisions4 Euthanasia:The administration of drugs with the explicit intention of ending the patient's life, at the patient's request. Physician-assisted suicide:The prescription or supplying of drugs with the explicit intention of enabling the patient to end his or her own life. Ending of life without the patient's explicit request:The administration of drugs with the explicit intention of ending the patient's life, without a concurrent, explicit request by the patient. Alleviation of pain and symptoms with opioids: The administration of doses large enough so that there was a probable life-shortening effect. A decision not to treat:The withholding or withdrawing of potentially life-prolonging treatment. 2: Medical disciplines in Australia that involve the possibility of doctors making medical end-of-life decisions* Group A: Emergency medicine, intensive care, neonatology, medical oncology, palliative care, renal medicine, cardiothoracic surgery. Group B: Cardiology, clinical haematology, geriatric medicine, general medicine/general physician, immunology, infectious diseases, radiation oncology, respiratory medicine, abdominal surgery, neurosurgery, vascular surgery, gynaecological oncology, otorhinolaryngology. Group C: Breast surgery, endocrinology, gastroenterology, general practice, general surgery, neurology, urological surgery * Participating doctors were asked to nominate the group containing the medical discipline in which they practise. Medical disciplines were extracted from the Australasian Medical Masterfile Database. 3: Characteristics of medical end-of-life decisions reported by 800 Australian doctors 4: Estimated proportion of medical end-of-life decisions in Australia 5: Comparison of medical end-of-life decisions in Australia and the Netherlands*

Helga Kuhse · Peter Singer · Peter Baume · Malcolm Clark · Maurice Rickard

The euthanasia debate The end of life: We need a humane and informed framework, not only a medical model, to deal with death and dying MJA 1996; 165: 535 Readers may print a single copy for personal use. No further reproduction or distribution of the articles in whole or in part should proceed without the permission of the publisher. For copyright permission, contact the Australasian Medical Publishing Company Journalists are welcome to write news stories based on what they read here, but should acknowledge their source as "an article published on the Internet by The Medical Journal of Australia <http://www.mja.com.au/>". - - ©MJA1996 Dealing with death and dying (which includes requests for euthanasia) is an integral part of the practice of medicine. Surveys of health care professionals in Australia and overseas now consistently show that a considerable proportion of them support euthanasia or physician-assisted suicide under certain conditions. 1-4 A minority of health care professionals also admit to having practised euthanasia or physician-assisted suicide. For example, the most recent Australian survey found that one in seven doctors had helped a 0atient to die. 5 Other surveys have reported that 19 per cent of doctors in South Australia 6 and 29 per cent of doctors in Victoria had taken active steps to hasten death in patients with terminal or incurable disease who had requested they do so . 7 In one of the most detailed surveys of the practice of euthanasia in Holland, van der Maas et al. 4 found that in 1.8 per cent of all deaths a lethal drug was administered, at the patient's request, to end life, and in 38 per cent of all deaths doctors had taken medical decisions concerning the end of life that may have shortened the patient's life. van der Maas et al. 4 concluded that medical decisions concerning the end of life were common in medical practice and should be the subject of increased research, teaching, and public debate. Other recent international studies have reported similar findings. 1,2 Surveys of community attitudes also show increasing support for euthanasia and physician-assisted suicide. In 1962 only 47 per cent of Australians, when asked "if a patient in great pain, with no hope of recovery, asks for a lethal dose, should a doctor be allowed to administer one?", replied in the affirmative. In 1996, 76 per cent gave the same response. Correspondingly, the response "not give lethal dose" declined from 39 per cent in 1962 to 17 per cent in 1996. 8 The study by Waddell et al. reported in this issue of the Journal makes a significant contribution to the euthanasia debate in Australia. Unlike most previous Australian studies that elicited doctors' responses to general questions concerning end-of-life treatment decisions, 5,6 this study used real and comprehensive clinical scenarios. Based on a recent Canadian study, 9 Waddell et al. used a questionnaire that presented clinical cases in which the patients' sociodemographic characteristics, mental competence, severity of illness and wishes for treatment varied. (One of these clinical vignettes involved the issue of physician-assisted death requested by a 56-year-old competent man with a debilitating, but not imminently terminal, condition.) The respondents were asked to state what they would do. A major finding was that Australian doctors did not make consistent decisions in the treatment of severely and terminally ill patients. The doctors' decisions were influenced by their medical training and sociodemographic background, and the data suggested that there were no clear criteria to guide doctors in managing these clinical situations. Waddell et al. suggest that the capacity of doctors to treat severely and terminally ill patients in accordance with the patients' wishes may be aided by the informed-consent process, as well as by advance care planning. The study also revealed that only a small minority of doctors would have complied with the wish of the patient for euthanasia. This study again raises questions about medical decisions concerning the end of life -- questions that deserve an informed public debate. Why are most doctors against the legalisation of euthanasia? 3 Are public interests in Australia served by existing medical practices that deal with the dying patient? Several factors may explain the opposition of doctors to euthanasia. First, in general, in modern medicine death is viewed as a failure; hence the reluctance of medical professionals to reinforce this perception by accepting euthanasia and physician-assisted suicide. The response of modern medicine to the complex set of problems surrounding the dying patient is to provide effective and accessible palliative care. Second, the various surveys mentioned earlier suggest that dealing with death and dying is seen as an integral part of the practice of medicine. Doctors would prefer to keep this management within their professional practice to allow them the flexibility to respond to the very complex realities of differing clinical situations, in which decisions must take into account the unique nature of the suffering of the individual patient and the availability of the appropriate medical facilities to care for the patient. The regulation of death and dying through a formal legal process could make it difficult for doctors to respond to the individual needs of the patient and could also subject doctors to unreasonable and extended legal scrutiny. The intrusiveness of legislation into the doctor-patient relationship was alluded to by Brendan Nelson, the former federal President of the Australian Medical Association, when he stated: "We can't reach for a legislative pen every time we have a problem or we see something in life we'd like to regulate. In the end doctors will continue to do what they believe to be right in the interests of the patient and his or her immediate family." Dr Nelson also said that euthanasia should not be legalised, as this could lead to its unethical use. 10 The opposition of doctors to euthanasia and physician-assisted suicide may also be related to their "self-image". As Lickiss 11 points out, putting someone to death will fundamentally change the character of the doctor; and the contribution of doctors to carrying out requests for euthanasia may have profound effects on their image in our society. Doctors see themselves as the bringers of life, hope and healing -- not as the bringers of death. Legalisation of euthanasia also raises a serious moral dilemma for those doctors who may be opposed to it on religious or ethical grounds. The community's unease about the legalisation of euthanasia is related to the concerns of some religious and ethnic groups that, besides violating the ultimate human value -- the sanctity of life -- such legislation may render the less privileged and the poor in the community more vulnerable to unethical practices. However, notwithstanding the concerns of the medical profession and some key groups in society, the debate about the right of an individual to make a decision about his or her own death is not going to disappear. Society will ultimately have to resolve the issue by balancing two central human values: sanctity of life and human dignity. Legislation now before the European Parliament stipulates that human life cannot be reduced to mere biological functions. Is it desirable that, as a civilised society, in our efforts to protect and celebrate the sanctity of life we may have to compromise human dignity? A civilised society must protect, cherish and celebrate both the sanctity of life and human dignity. 3 Society needs an informed and humane framework to deal with death and dying. In Australia, the Northern Territory Rights of the Terminally Ill Act presents an opportunity to assess whether the legalisation of euthanasia may help us to meet this need. Allowing this legislation to function would be consistent with the values of a pluralistic democracy. Riaz Hassan Professor of Sociology, The Flinders University of South Australia, Adelaide, SA Asch DA. The role of critical case nurses in euthanasia and assisted suicide. New Engl J Med 1996; 334: 1374-1379. Emanuel EJ, Fairclough DL, Daniels ER, Clarridge BR. Euthanasia and physician-assisted suicide: attitudes and experience of oncology patients, oncologists, and the public. Lancet 1996; 347: 1805-1810. Hassan R. Euthanasia and the medical profession: an Australian study. Aust J Social Issues 1996; 31: 239-252. van der Maas PJ, van Delden JJM, Pijnenborg L, Looman CWN. Euthanasia and other medical decisions concerning the end of life. Lancet 1991; 338: 669-674. Baume P, O'Malley E. Euthanasia: attitudes and practices of medical practitioners. Med J Aust 1994; 161: 137-144. Stevens C, Hassan R. Management of death, dying and euthanasia: attitudes and practices of medical practitioners in South Australia. J Med Ethics 1994; 20: 41-46. Kuhse H, Singer P. Doctors' practices and attitudes regarding voluntary euthanasia. Med J Aust 1988; 148: 623-627. Walsh K-A . Will to die: Australians expect the freedom to manage their lives -- so why not their deaths? The Bulletin , September 17, 1996. Molloy W, Guyatt GH, Alemayehu E, et al. Factors affecting physicians' decisions on caring for an incompetent elderly patient: an international study. Can Med Assoc J 1991; 145: 947-952. Zinn C. Euthanasia bill divides Australian doctors and MPs [News]. BMJ 1995; 310: 421. Lickiss N. Chapter In: Chapman S, Leeder S, editors. The last right? Australians take sides on the right to die. Melbourne: Mandarin 1995. - - To top of article - ©MJA 1996 <URL: http://www.mja.com.au/> © 1996 Medical Journal of Australia.

Riaz Hassan

Treatment decision-making at the end of life: a survey of Australian doctors' attitudes towards patients' wishes and euthanasia Charles Waddell, Roger M Clarnette, Michael Smith, Lynn Oldham and Allan Kellehear MJA 1996; 165: 540 For editorial comment, see Hassan Readers may print a single copy for personal use. No further reproduction or distribution of the articles in whole or in part should proceed without the permission of the publisher. For copyright permission, contact the Australasian Medical Publishing Company Journalists are welcome to write news stories based on what they read here, but should acknowledge their source as "an article published on the Internet by The Medical Journal of Australia <http://www.mja.com.au/>". Abstract - Introduction - Methods - Survey participants - Questionnaire - Statistical analysis - Results - Case scenarios 1 and 2 - Case scenario 3 - Case scenario 4 - Responses to request for assisted death - Factors influencing choice of treatment - Factors influencing doctors' responses to patient's request for assisted death - Discussion - Acknowledgements - References - Authors' details - - ©MJA1996 Abstract Objective: To examine factors that influence medical practitioners' treatment decisions for patients with life-threatening or terminal illnesses. Design: Postal survey, conducted between September and November 1995, of a self-administered questionnaire, describing four clinical case scenarios, to a random sample of 2172 Australian doctors in all States and Territories. Respondents were asked to prescribe treatment for the patients described in the scenarios. Patients' characteristics varied in terms of mental competence, illness severity, prognosis, the presence of advance directives, request for assisted death, and sociodemographic factors. The respondents' sociodemographic and medical training characteristics were also obtained. Setting: Random national sample of all active medical practitioners. Participants: Hospital trainees, general practitioners, physicians, palliative care practitioners and surgeons were surveyed. A response rate of 73% was achieved. Main outcome measures: Frequency of prescription of supportive, acute or intensive treatment for patients in the four clinical scenarios based on respondents' sex, religion, medical training and country of medical degree. Results: Three main findings were: (i) doctors did not make consistent decisions, but their decisions varied systematically by sociodemographic and medical training factors; (ii) doctors generally adhered to patient and family wishes when these were known; (iii) doctors did not generally adhere to a patient's request for assisted death. Conclusion: Treatment provided is significantly determined by the individual characteristics of the doctor and not solely by the nature of the medical problem. Participation in the informed-consent process and in the preparation of advance health care directives would enable practitioners to be familiar with patient and family wishes and could reduce variations of treatment related to sociodemographic and medical training factors. Stronger empirical data on the way that treatment decisions are made could provide the basis for an informed euthanasia policy. MJA 1996; 165: 540-544 Introduction Advances in medical technology have allowed the medical profession to maintain life to an extent that is beyond the limits of what many would consider reasonable quality. 1-5 The use of advanced technology, particularly for terminal illnesses, has created a complex array of ethical, moral and legal issues, 6-8 and has been accompanied by opportunities for greater patient participation in treatment decision-making and individual involvement in choosing care. 1,3,4,8 The most contentious aspect of these developments seems to be the promotion of requests for physician-assisted death -- euthanasia. 1,6,9 However, the emphasis on euthanasia has been tempered by a greater focus on palliative-care principles in the management of patients with terminal and life-threatening illnesses. 10-12 A major impediment to the consideration of these issues is the lack of strong empirical data to indicate the way in which treatment decisions are reached. The process that leads to decision-making and action in clinical practice is unclear, and the factors that determine who ultimately makes a treatment decision, what influences treatment choice, and how the treatment is carried out have yet to be established. Although the idea of informed consent implies significant patient participation in decision-making, there is no evidence that such participation actually occurs. Indeed, many patients are incapable of giving informed consent. Doctors and family members usually make decisions in such circumstances, but the path for this process is unknown. Some authors have advocated the use of advance health care directives that can advise doctors of a patient's wishes regarding care should he or she become incompetent. 2 Several studies, surveying both the general public and health professionals, have examined areas relevant to these issues, including reactions of family members to the death of loved ones; 8,10,13 attitudes of doctors to death, dying 1-5 and palliative care; 12,14 doctors' experience with requests for euthanasia; 1,9,15 and factors that influence doctors' choice of treatment. 1-5,7 However, while many of these reports discuss the legal, ethical, medical and philosophical problems confronting health professionals, they do not address the factors that influence the health professionals to act as they do. To examine the factors that influence doctors' decisions on treatment for patients with life-threatening or terminal illnesses, we presented doctors with actual comprehensive clinical scenarios described in a questionnaire and asked them to state what they would do. Methods Survey participants A postal survey was conducted between September and November 1995. An initial mailing of the questionnaire was sent to a national sample of 2016 doctors with a workload of 50 or more services (i.e., items billed to Medicare) per quarter, randomly selected by the Health Benefits Division of the then Commonwealth Department of Human Services and Health. The questionnaire was also posted to all Australian palliative care practitioners registered with the Australian and New Zealand Society of Palliative Medicine ( n = 156). Each practitioner was asked to complete and return the questionnaire anonymously. After two weeks, a reminder card was sent to all in the sample. Of the 2172 posted, 1588 usable questionnaires were returned (3% trainees [interns, residents, registrars]; 41% general practitioners; 10% palliative care practitioners; 46% specialists). The response rate, 73.1%, compared favourably with that of Baume and O'Malley (76.1%). 9 Eighty-seven questionnaires were returned because they were incorrectly addressed. Questionnaire The questionnaire was based upon that used by Molloy and colleagues 2 in Canada. We adapted their case scenarios to the 1995 Australian context, particularly including the issue of physician-assisted death. The questionnaire presented scenarios based on clinical cases (see Box 1). The doctors were asked to choose one of three treatment options in each scenario: 1. Supportive care -- keep warm, dry and pain-free; use only those measures that enhance comfort or minimise pain; start intravenous line only if it improves comfort; perform no x-rays or blood tests and give no antibiotics unless such measures are intended only to improve comfort; 2. Acute care -- may involve transfer to acute-care facility; perform emergency surgery if necessary; do not ventilate (except during and after surgery); carry out all acute-care interventions, except for admission to the intensive care unit or the coronary care unit and performing organ transplantation; 3. Intensive care -- all possible interventions necessary to maintain life. The doctors were also asked how they would respond to a patient's request for assisted death (scenario 4). Three possible responses were listed: 1. Refuse request for assisted death, and explain and provide palliative (supportive) care only; 2. Agree to assist death by providing the means (e.g., by prescribing lethal medication); and 3. Agree to assist death by active intervention (e.g., by administering a fatal dose of narcotic analgesic). To assess the degree to which six independent variables -- legal, ethical, religious and economic factors and patient's and family's wishes -- influenced the choice of treatment, the doctors were asked to complete a five-point Likert-type scale following each scenario. Finally, the questionnaire addressed the sociodemographic characteristics (sex; religious background) and the training of the participating doctors (country of basic medical degree; number of years qualified; level of medical training). The study was approved by the Human Rights Committee, the University of Western Australia. Statistical analysis Our analysis cross-tabulated the aggregated responses to the treatment options of the four clinical scenarios with the sociodemographic and medical training factors to examine whether medical decision-making varied significantly depending on these factors. Statistical significance was tested by chi-squared tests, with exact probability levels being reported. 16 We examined the strength and direction of the relationships among treatment options for the four clinical scenarios and the six independent variables. Somers' d correlation matrix is presented with chi-squared levels of statistical significance of 0.01 and 0.001. 16 Stepwise regression analysis was used to assess the degree of variance explained by the six independent variables in the doctors' responses to the request for physician-assisted death. Results Case scenarios 1 and 2 In the 80-year-old incompetent woman with life-threatening and acute illnesses without the medical directive (Box 2, scenario 1), there were significant differences among doctors' choices by all sociodemographic and medical training factors, except for religion. In the 80-year-old incompetent woman with life-threatening and acute illnesses with a medical directive for acute treatment (Box 2, scenario 2), there were significant differences by religion and medical training factors, but no significant difference between male and female doctors. This woman was twice as likely to receive acute care than was the woman without a medical directive. Case scenario 3 In their treatment choices for the 33-year-old competent woman with terminal and acute illnesses insisting on intensive care, there were significant differences among the doctors by medical training factors but not by sociodemographic factors (see Box 2). Doctors from non-Western countries were more likely to honour the patient's request for intensive care than were Western-trained practitioners; however, most doctors chose acute care for this patient. Older doctors and those not trained in palliative care were also more likely to honour the patient's request for intensive care. Case scenario 4 Nearly all doctors (more than 93%) chose supportive care for the treatment of the 56-year-old competent man with motor neurone disease who requested physician-assisted death. The only significant difference was between doctors trained in Western and non-Western countries, with a greater percentage of the latter choosing more interventionist medical treatment. Responses to request for assisted death Box 2 shows three notable findings on the doctors' responses to the request for assisted death: 1. Most doctors reported that they would provide palliative care only to this patient (explaining the grounds for the decision); 2. The percentage of doctors who were willing to provide only the means to assist death was larger than the percentage who were willing to intervene actively to assist death (frequently referred to as active euthanasia); 3. Female, Catholic, Western-trained and older doctors, as well as palliative care practitioners, were the least willing to engage in any form of euthanasia; agnostic/atheist doctors were the most willing to engage in some form of euthanasia; and doctors trained in non-Western countries were more likely than Western-trained doctors to be willing to provide the means to assist death, but were less likely than Western-trained doctors to actively intervene to assist death. Factors influencing choice of treatment Box 3 presents the Somers' d correlation matrix for scenario treatments with factors influencing treatment choice. For the incompetent 80-year-old woman without the medical directive (scenario 1), legal and ethical factors showed a significant positive correlation with the treatment choice, whereas the patient's and the family's wishes had a significant negative correlation with treatment choice. For the incompetent 80-year-old woman with a medical directive (scenario 2), cost and the patient's and family's wishes were significantly related to the treatment choice, the latter two of these three independent variables being positively associated with treatment choice. For the 33-year-old competent woman insisting on intensive treatment (scenario 3), ethics and the patient's and family's wishes had a significant relation to treatment choice. For the 56-year-old man with motor neurone disease who requested assisted death (scenario 4), none of the factors examined were significantly related to treatment choice. Across the matrix, patient's wishes seemed to have a significant positive relationship with doctors' treatment choice in scenarios 2 and 3, but not in scenario 1 (patient's wishes not known) or in scenario 4 (the patient who requested assisted death). This pattern of correlation suggests face validity for this set of questions. It should be noted that, while some coefficients are statistically significant, they do not suggest strong relationships between the variables. Factors influencing doctors' responses to patient's request for assisted death Stepwise regression analysis of the six independent variables that influenced the doctors' responses to the patient's request for assisted death showed three of these variables to be significant: patient's wishes (F = 67.0; P < 0.001), ethical factors (F = 38.8; P < 0.001) and religious beliefs (F = 27.2; P < 0.001). However, together, these three variables still explained only seven per cent of the variance in doctors' responses to the patient's request for assisted death. Legal (F = 0.028; P = 0.87) and cost factors (F = 2.618; P = 0.11) and family wishes (F = 0.017; P = 0.90) were not significant in predicting doctors' responses to the patient's request for assisted death in this analysis. Discussion A major finding of this study was that doctors did not make consistent decisions on the treatment of severely ill and terminally ill patients at the end of life. The data suggest that there are no uniform criteria to guide doctors in managing such clinical situations. If these decisions are left solely to doctors then the outcome will vary systematically according to medical training and sociodemographic factors. The data also show that doctors generally adhered to patients' wishes, both those expressed contemporaneously and those expressed via advance directives. The doctors also considered the wishes of family members to be important in making their treatment choices. Doctors' capacity to treat patients according to their wishes (and, if necessary, according to the wishes of their families) could be enhanced in two ways: 1. By engaging competent patients (and their families, if required) in comprehensive discussions of treatment options and likely outcomes -- in short, by participating in the informed-consent process. 2. By developing and implementing methods for advanced care planning (advance directives) so that patients can inform doctors of the care they would want if they were to suffer severe and terminal illness and become incompetent. The first practice, informed consent, may be required by law. However, the concept of informed consent presents problems in a multicultural society, not only because of potential communication problems, but also because of cultural differences in such matters as "truth telling" about the seriousness of an illness. 17 The second practice, the use of advance care planning, is accepted in principle (although its manner of implementation is debated) in North America and the United Kingdom. The practice is rarely even discussed in Australia. In multicultural Australia, research that could inform policy on the acceptability and the implementation of these two practices is lacking. Such research would seem to be imperative. With respect to euthanasia, this study showed that few doctors would have complied with the wish of the patient who requested assisted death. Baume and O'Malley 9 speculated that such reluctance was a function of the illegality of the action. Our data do not support this speculation. While patients' wishes, and ethical and religious factors for doctors (as with Baume et al. 18 ), seem to be more efficient predictors than legal factors, even the three former variables explain little of the variance in doctors' response to this request for assisted death (only seven per cent for the three variables together). As an alternative to the speculation of Baume and O'Malley, 9 it may be that, in Australia today, doctors believe that assisting a patient to die is an act that negates what they perceive to be the very essence of their profession. The different ways that doctors perceive this indefinable essential quality (that is, what it means to each of them to be a doctor) may explain the variations in their decision-making. As Lickiss 19 writes: There will always be differences of opinion on profound matters in a free society, but being put to death with one's consent is not a private matter, for it strikes at the foundations of what we are, and affects not only the one put to death but the one who carries it out. Our acts shape us, and the act of putting another person to death must change us. If we are doctors, it strikes at the core of what we should be in society: bringers of life, of hope, of healing, of comfort, sometimes bringers of bad news, companions on the way. But not bringers of death. Hunt, 20 an apparent proponent of some forms of euthanasia, notes that palliative-care practitioners are firmly opposed to physician-assisted death. Other medical practitioners are also opposed. 6,15 Nevertheless, despite the finest symptom management, some terminally ill patients make serious requests for assisted death. 21,22 Perhaps, if some form of euthanasia is to be available to these patients, medical practitioners may not be the most appropriate group to carry out the request. Certainly, it would be prudent to investigate doctors' perceptions of what it means to them to be a doctor in Australia today. Furthermore, as stated at the beginning of the paper, a major impediment to informed consideration of the issue of euthanasia in Australia is the lack of strong empirical data. While we have added to and improved the data by this study, in which we questioned a national sample of doctors about their end-of-life treatment decisions in the specific clinical scenarios described, we did not attempt the difficult task of obtaining empirical data related to clinical decision-making at the bedside. Data drawn from strong research into this decision-making process could provide important information before policy on euthanasia is drafted and implemented. Acknowledgements This research was funded by the Commonwealth Department of Health and Family Services, Canberra. References Stevens CA, Hassan R. Management of death, dying and euthanasia: attitudes and practices of medical practitioners in South Australia. J Med Ethics 1994; 20: 41-46. Molloy W, Guyatt GH, Alemayehu E, et al. Factors affecting physicians' decisions on caring for an incompetent elderly patient: an international study. Can Med Assoc J 1991; 145: 947-952. Kelner MJ, Bourgealt IL. Patient control over dying: responses of health care professionals. Soc Sci Med 1993; 36: 757-765. Solomon MZ, O'Donnell L, Jennings B, et al. Decisions near the end of life: Professional views on life- sustaining treatments. Am J Public Health ; 1993; 83: 14-22. Christakis NA. Physician characteristics associated with decisions to withdraw life support. Am J Public Health 1995; 85: 367-372. Komesaroff PA, Lickiss JN, Parker M, Ashby MA. The euthanasia controversy: decision-making in extreme cases. Med J Aust 1995; 162: 594-597. Kaufman SR. Decision making, responsibility, and advocacy in geriatric medicine: physician dilemmas with elderly in the community. Gerontologist 1995; 35: 481-488. Ashby M, Wakefield M. Attitudes to some aspects of death and dying, living wills and substituted health care decision-making in South Australia: public opinion survey for a parliamentary select committee. Palliat Med 1993; 7: 273-282. Baume P, O'Malley E. Euthanasia: attitudes and practices of medical practitioners. Med J Aust 1994; 161: 137-145. Maddocks I. Good palliative care orders. Palliat Med 1993; 7: 35-37. Baume P. Living and dying: a paradox of medical progress. Med J Aust 1993; 59: 792-794. Wakefield MA, Beilby J, Ashby MA. General practitioners and palliative care. Palliat Med 1993; 7: 117-126. Seale C, Addington-Hall J. Euthanasia: the role of good care. Soc Sci Med 1995; 40: 581-587. Allbrook D. Palliative care in the 1990s? Med J Aust 1991; 155: 286-287. Anderson JG, Caddell DP. Attitudes of medical professionals toward euthanasia. Soc Sci Med 1993; 37: 105-114. Siegel S. Nonparametric statistics for the behavioural scientist . London: McGraw-Hill 1956. Waddell C, McNamara B. The stereotypical fallacy: a comparison of Chinese- and Anglo-Australians' thoughts about death-related matters. Presented at the Annual Australian Sociology Association Meeting, Newcastle, NSW. December 1995. Baume P, O'Malley E, Bauman A. Professed religious affiliation and the practice of euthanasia. J Med Ethics 1995; 21: 49-54. Lickiss, N. Chapter in: Chapman S, Leeder S, editors The last right? Australians take sides on the right to die. Melbourne: Mandarin, 1995: 98. Hunt RW. The hospice movement matures. Med J Aust 1996; 164: 452-453. Stephany TM. Assisted suicide: how hospice fails. Am J Hospice Palliat Care 1994; 11: 4-5. Peteet JR. Treating patients who request suicide: a closer look at the physician's role. Arch Fam Med 1994; 3: 723-727. (Received 15 May, accepted 29 Jul 1996) Authors' details The University of Western Australia, Nedlands, WA. Charles Waddell, PhD, Senior Lecturer in Anthropology. Department of Geriatric Medicine, Osborne Park Hospital, Perth, WA. Roger M Clarnette, MB BS, FRACP, Consultant Physician. Silver Chain Hospice Care Services, Perth, WA. Michael Smith, MB BS, MRACMA, Director of Clinical Services. The Cancer Foundation Cottage Hospice, Perth, WA. Lynn Oldham , BN(Hons), Clinical Nurse Specialist. Turning Point Alcohol and Drug Centre, Fitzroy, VIC. Allan Kellehear, PhD, Professor, and Head of Research Development. No reprints will be available. Correspondence: Dr Charles Waddell, Department of Anthropology, The University of Western Australia, Nedlands, WA 6907. E-mail: cwaddell AT uniwa.uwa.edu.au - - To top of article - ©MJA 1996 <URL: http://www.mja.com.au/> © 1996 Medical Journal of Australia.

Charles Waddell · Rodger M Clarnette · Michael Smith · Lynn Oldham · Allan Kellehear

Major depression and refusal of life-sustaining medical treatment in the elderly Stuart C Hooper, Kevin J Vaughan, Christopher C Tennant and Janette M Perz MJA 1996; 165: 416-419 Abstract - Introduction - Methods - Patients and assessment - Follow-up - Statistical analyses - Results - Patients - Intensity of depression - Desire for life-sustaining treatment - Discussion - Acknowledgements - References - Authors' details Abstract Objective: To examine the effect of improvement or recovery from major depression in elderly patients on their desire for life-sustaining treatments. Design: Prospective case survey. Setting: Psychogeriatric Service of Hornsby Ku-ring-gai Hospital & Community Health Services and Ryde Hospital & Community Health Services (a community-based service serving an urban population with over 29 000 elderly people). Subjects: All patients referred with major depression (diagnosed by DSM-IV criteria) and no significant cognitive impairment between October 1994 and January 1995. Outcome measures: Number of life-sustaining treatments desired before and after treatment of depression in two hypothetical acute life-threatening illnesses (one with a good and the other with an uncertain prognosis), and intensity of depression on the Geriatric Depression Scale (GDS). Results: 22 subjects completed both stages of the study. Initial depression was severe in five, moderate in 16 and mild in one. GDS scores decreased in 18 subjects after treatment. Mean number of life-sustaining treatments desired by these patients increased significantly from 4.0 to 6.1 (out of seven possible treatments) in the "good prognosis" illness and from 6.4 to to 9.6 (out of 14) overall. The increase in the "uncertain prognosis" illness (2.3 to 3.4) was not significant. Conclusions: Moderate or severe major depression in the elderly is associated with a high degree of refusal of life-sustaining treatments. Treatment of the depression leads to increased acceptance of these treatments, particularly if prognosis is good. MJA 1996; 165: 416-419 Introduction Decisions about withdrawing or withholding life-sustaining medical treatments have become problematic in recent decades. Dramatic advances in medical technology enable many severely ill patients to remain alive, yet the decision to prolong life is tempered by the finite nature of resources, economic rationalism and the patient's quality of life. In the United States, it is estimated that decisions to limit medical treatment are made for about 70% of patients who die in hospital.1 In many cases, this is due to patient refusal of further medical treatment and is part of the strong shift towards respecting patients' autonomy and right to self-determination. In all Australian States, there is a common-law right for competent patients to refuse medical treatment, including life-sustaining treatment. In Victoria, South Australia and the Northern Territory, this right has received statutory recognition. In these States, legislation also permits competent individuals over 18 years to make advance directives ("living wills") specifying that in the event of a terminal illness the individual does not wish to be subjected to extraordinary life-prolonging measures.2 However, the potential influence of depressive illness on patients' refusal of life-sustaining treatment is often neglected. In the elderly (who are disproportionately represented among those who have life-sustaining treatment withheld or withdrawn), depression is often not recognised by primary care physicians.3-7 Misdiagnosis is especially likely in the elderly if symptoms are atypical (e.g., cognitive deficits [pseudo dementia], somatisation or anxiety). Further, with depression impairments in decision-making may be under-recognised, as the cognitive aspects of competence (which are emphasised by doctors and courts) may remain intact, while more subtle abilities (such as the ability to assign realistic values or meanings to the risks and benefits of prospective treatments)8,9 may be impaired. Depressed patients may undervalue potential positive outcomes and predict negative outcomes.9 These "affective" aspects of clinical competence are generally not considered as important as the "cognitive" aspects and can be more difficult to detect.10 The negative outlook disappears after recovery from depression, suggesting that it is specific to the illness phase and not a trait of depression-prone individuals.11,12 Case reports have highlighted patients who have initially refused, but later accepted, life-sustaining treatment after recovery from depression.9,15-18 Longitudinal studies of male Veterans Administration patients in the United States found that desire for life-sustaining treatment was not increased by recovery from major depression of mild to moderate severity,13,14 but was significantly increased if the major depression was severe.14 However, the extent to which results of these case reports and longitudinal studies can be generalised is uncertain. We therefore investigated the effect of recovery from major depression on preferences for life-sustaining treatments in a group of patients referred to an Australian community psychogeriatric service. Methods Our study was approved by the Ethics Committee of the Hornsby Ku-ring-gai Hospital & Community Health Services and Ryde Hospital & Community Health Services. Patients and assessment Subjects for the study were drawn from consecutive patients referred to the Psychogeriatric Service of Hornsby Ku-ring-gai Hospital between October 1994 and January 1995. The Psycho geriatric Service is a community-based service with inpatient facilities, serving an area with over 29 000 elderly people. Inclusion criteria: Diagnosis of DSM-IV major depression,19 made by clinical interview with the consultant psychiatrist and senior psychiatric registrar of the Psychogeriatric Service, according to DSM-IV criteria (Box 1). Severity of depression (mild, moderate, severe) was also assessed clinically with DSM-IV criteria; Mini-Mental State Examination score (MMSE) > 17.20 This was used to screen out patients with significant cognitive impairment; and Informed consent given. Intensity of depression was assessed with the Geriatric Depression Scale (GDS). This is a rating scale (not a diagnostic instrument) that provides a numerical index of intensity of depression and was designed exclusively for use in elderly patients. It contains 30 questions requiring a yes or no answer, which can be either self- or observer-administered. One-week test-retest reliability of 0.85 and criterion validity of 0.82 have been recorded.21,22 Desire for life-sustaining treatment was assessed by a questionnaire adapted from Lee and Ganzini,13 with simplification of the hypothetical scenarios. Patients were asked to "imagine that you developed a sudden life-threatening illness with an uncertain chance of recovery". They were then asked, "Would you want the following procedures should they be needed?". These comprised intravenous fluids with medication, nasogastric tube, blood transfusions, intensive care, kidney dialysis, mechanical ventilatory support, and cardiopulmonary resuscitation. The question was repeated for a similar illness with a good chance of complete recovery. Desire for life-sustaining treatment was quantified by assigning a point for each treatment desired. Follow-up After standard treatment for major depression (including pharmacological agents in all cases and electroconvulsive therapy in two), clinical assessments, GDS and questionnaires were repeated. At least six weeks was allowed before follow-up as the elderly may take longer to respond to antidepressant treatment. Recovery (remission) from major depression was diagnosed clinically at follow-up interview if patients no longer met the DSM-IV criteria for major depression. Statistical analyses The paired t test was used to compare initial and follow-up GDS scores. The Wilcoxon signed-rank test (a non-parametric test) was used to compare initial and follow-up scores for the life-sustaining treatment questionnaire, scoring 1 for any increase and 0 for any decrease and ignoring patients who did not change. The binomial distribution was consulted, with parameters 0.5 and the number of people who changed preferences. Results Patients Of 25 consecutive patients referred with major depression to the Psychogeriatric Service during the study period, 22 were included in the study. Two failed to meet the inclusion criteria (one did not give informed consent and the other did not score sufficiently on the MMSE) and a third died before follow-up. Demographic characteristics of the 22 who completed the study are shown in Box 2. A notable feature was the very high proportion of women in the group (82%). All but four of the patients were new referrals to the service and 10 (46%) were reporting their first depressive disorder. None had a history of previous prolonged psychiatric hospitalisations or previous suicide attempts. Twelve patients (55%) were treated in their homes, eight (36%) were treated predominantly in an inpatient psychiatric unit and two (9%) predominantly in a medical ward. Follow-up after a mean of 88.5 days (SD, 26.3) showed no significant changes in the number of medical illnesses or in demographic variables. Intensity of depression Severity of the depression was classed as moderate for 16 patients (73%), severe for five (23%) and mild for one (5%). Mean GDS score for the group was 24.4 (SD, 3.3) and decreased significantly on follow-up to 16.7 (SD, 8.0) ( P < 0.0005). Individual GDS scores decreased ("improved") in 18 patients, and 12 of these (55% of the total number) were diagnosed clinically as recovered from major depression, according to DSM-IV criteria. Desire for life-sustaining treatment Changes in desire for life-sustaining treatment among those whose depression improved or recovered are shown in Box 3. There were significant increases in the number of interventions desired overall and for the "good prognosis" illness among both the 12 patients who recovered from depression (according to DSM-IV criteria for remission) and the 18 whose GDS scores improved (including six who were not classed as recovered by DSM-IV criteria). There were also increases in the number of interventions desired for the "uncertain prognosis" illness, but the change was significant only in the "recovered" group. Of the 12 patients who recovered, nine had had major depression of moderate severity. The number of interventions desired among these nine also increased significantly overall ( P = 0.05) and for the "good prognosis" illness ( P = 0.04), but not for the "uncertain prognosis" illness. Discussion We found that remission of major depression in the elderly was associated with a significant increase in acceptance of life-sustaining treatments. This increase occurred for both moderate and severe forms of major depression. However, our study has limitations which should caution against drawing firm general conclusions. The main limitations are the relatively small sample size and the possibility of a gender bias caused by the high proportion of female patients. We also do not know the correlation between responses to hypothetical questionnaires and actual decisions when confronted with an "end of life" situation. However, indicating preferences to hypothetical scenarios is similar to executing a "living will" (also, in effect, hypothetical). The hypothetical scenarios examined only acute, not chronic, illnesses, and the findings of this study cannot necessarily be generalised to patients who have coexisting life-threatening medical conditions. In addition, the word "uncertain", used to describe prognosis in one of the scenarios, may have been ambiguous, as all prognoses are uncertain. It was chosen to enable comparison with Lee and Ganzini's studies,13,14 but "poor" or "unfavourable" would have been less ambiguous. A further limitation involved the diagnostic assessments, which did not use structured diagnostic instruments. Our results vary from those of other longitudinal studies.13,14 Ganzini et al.14 found that recovery from major depression was associated with change in preferences for life-sustaining treatments only if the depression was severe. Lee and Ganzini13,14 concluded that, in major depression of mild to moderate severity, "patients should not be discouraged from completing advance treatment directives and that choices by these patients to limit treatment should be respected". However, our finding of a significant increase in the number of life-sustaining treatments desired by nine patients who recovered from major depression of moderate severity suggests that doctors should be cautious about adopting such an approach in the elderly with moderate major depression. Differences between the results of our study and those of Ganzini et al.14 may have been caused by differences between samples and methods. Their sample had a higher proportion of men (81% versus 18% in our study) and their questionnaire about life-sustaining treatments was more complex, possibly affecting subject comprehension and reducing the sensitivity of the instrument. They used DSM-III-R criteria to diagnose major depression, but the differences between these criteria and the DSM-IV criteria that we used are minor. However, neither set of criteria precisely defines the boundaries between mild, moderate and severe forms of major depression, allowing the possibility of diagnostic bias in classifying severity. Further, in analysing their data, Ganzini et al.14 defined a clinically evident increase in preference for medical therapy as an increase in desire for a mean of three or more of the 14 possible interventions. A different cut-off (e.g., two or more of the 14 interventions) would have led to different results. In addition, we allowed a longer time before follow-up than Ganzini et al.14 (mean, 88.5 days versus 24.5 days), and, although we found that degree of recovery measured by GDS was no greater, it is possible that preferences for life-sustaining treatments may take longer to improve than depression. Another possibility is that the longer follow-up period in our study allowed factors other than changes in level of depression to affect preferences. These studies highlight the potential for depression to influence patient desire for life-sustaining treatments, suggesting that clinicians would be wise to take into account patients' mental state when assessing refusal of life-sustaining treatments. If doubt exists about a patient's decisional capacity, or whether major depression is present, psychiatric consultation is indicated. In the absence of an advance directive (completed before the onset of depression), severely depressed patients' wishes to forgo life-sustaining treatments should not be respected until an attempt is made to treat the depression. In contrast, it appears reasonable to respect the wishes of mildly depressed patients, whereas in moderate major depression consensus is lacking. It would be prudent (until further studies clarify this question) to err on the side of preserving life and to treat moderate major depression of moderate severity before respecting a refusal of life-sustaining treatments. Furthermore, patients with moderate or severe major depression who are planning to write advance directives should be encouraged not to do so until their depression has been treated. In our patients whose depression "improved", we found no significant increase in number of life-sustaining treatments desired for an illness with uncertain prognosis. Although the lack of significance may have been due to the small sample size, it suggests that the prognosis of the illness should also be considered in clinical settings. When prognosis is so poor that treatment becomes futile, refusal of life-sustaining treatments should be respected regardless of the presence of major depression, in accord with the ethical and legal principle that doctors are not required to administer futile treatments. The ethical dilemma presented by a depressed patient with dubious decisional capacity who refuses life-sustaining treatments has received little attention. The physician who complies faces the prospect that the patient's decision was biased by the depression and would have reversed on recovery. The physician who does not comply faces the possibility that the request was authentic and the patient's life has been prolonged against his or her wishes. In resolving the dilemma, careful consideration should be given to the severity of the depression, the prognosis of the illness and whether treatment would be deemed futile, and also to any previous directives made by the patient when their decisional capacity was clearly intact. Acknowledgements We acknowledge the generous support of Dr R Russell (Psychogeriatrician, Royal North Shore Hospital), and Dr W Jenneke (Staff Specialist Psychiatrist, Hornsby Ku-ring-gai Hospital). References Greco P, Shulman K, Lavizzo-Mourey R. The patient self-determination Act and the future of advance directives. Ann Intern Med 1991; 115: 639-643. CCH Australia. Death with dignity. 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(Received 30 Oct 1995, accepted 3 Jun 1996) Authors' details Department of Mental Health, Hornsby Ku-Ring-Gai Hospital, Sydney, NSW. Stuart C Hooper, FRANZCP, Senior Psychiatric Registrar in Psychogeriatrics; now Consultant Psychiatrist, Sydney, NSW; Kevin J Vaughan, FRANZCP, Staff Specialist. Department of Academic Psychiatry, Royal North Shore Hospital, Sydney, NSW. Christopher C Tennant, FRANZCP, MD, Professor. Department of Psychology, Faculty of Arts and Social Sciences, University of Western Sydney, NSW. Janette M Perz, BA(Hons), Research Psychologist. No reprints will be available. Correspondence: Dr S C Hooper, 11 Clanalpine Street, Eastwood, NSW 2122.

Stuart C Hooper · Kevin J Vaughan · Christoper C Tennant · Janette M Perz