Issues
Volume 175 Issue 10
Death and Society The changing face of dying in Australia Allan Kellehear (MJA 2001; 175: 508-510) 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, Allan D Spigelman (MJA 2001; 175: 511-515)Commentary: Intention, the law, and clinical decision-making in terminal care Roger W Hunt (MJA 2001; 175: 516)Commentary: On causing death Michael A Ashby (MJA 2001; 175: 517-518)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, Gerrit van der Wal (MJA 2001; 175: 519-522)Commentary: Doctors, medicine and the care of the dying patient Brian J Kelly (MJA 2001; 175: 523-524)Commentary: When our patients die Christopher J Ryan (MJA 2001; 175: 524-525) Dying Where patients with cancer die in South Australia, 1990-1999: a population-based review Roger W Hunt, Belinda S Fazekas, Colin G Luke, David M Roder For Debate: Can we do better in end-of-life care? The mixed management model and palliative care Paul A Glare, Kiran Virik (MJA 2001; 175: 530-533)Commentary: Palliative service provision in Australia David C Currow (MJA 2001; 175: 534-536)Commentary: Demoralisation: its impact on informed consent and medical care David W Kissane (MJA 2001; 175: 537-539)Commentary: Hope and harm: a delicate balance Deborah A Campbell (MJA 2001; 175: 540-541) Suicide Suicidal ideation and suicide attempts as predictors of mental health service use Jane E Pirkis, Philip M Burgess, Graham N Meadows, David R Dunt (MJA 2001; 175: 542-545)Suicidal ideation and health-related quality of life in the community Robert D Goldney, Laura J Fisher, David H Wilson, Frida Cheok (MJA 2001; 175: 546-549)The relationship between chief complaints, psychological distress, and suicidal ideation in 15-24-year-old patients presenting to general practitioners Robert S McKelvey, Jon J Pfaff, John G Acres (MJA 2001; 175: 550-552)Commentary: Public health and suicide Ian W Webster (MJA 2001; 175: 553-554)Commentary: Is suicide a disease? Riaz Hassan (MJA 2001; 175: 554-555) Personal Perspectives In the end Michael Sorokin (MJA 2001; 175: 556-557)There was something about Mary Steven R Doherty (MJA 2001; 175: 558)
Death and society
The changing face of dying in Australia
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
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
Intention, the law, and clinical decision-making in terminal care
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
On causing death
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
Assisted suicide:
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. 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Ilinka Haverkate · Bregje D Onwuteaka-Philipsen
Doctors, medicine and the care of the dying patient
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
When our patients die
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
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