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The findings of a study of end-of-life medical decisions in Australia may provide ammunition for both supporters and opponents of euthanasia
MJA 1997; 166: 173
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General trends have emerged: there is majority community support for euthanasia or physician-assisted suicide |
The debate on euthanasia in Australia shifted abruptly from
abstraction to reality with the passage of the Rights of the
Terminally Ill Act by the Northern Territory Parliament
in May 1995. Overnight, euthanasia and physician-assisted suicide
became a legal choice for people with terminal illness.1
The Act has focused and polarised opinions on issues relating to medical decisions at the end of life. The deaths of three Australians (to date) under the provisions of the Act have been accompanied by an outburst of variously composed Greek choruses: citizens, ethicists, doctors, politicians, and media commentators. What should have been dignified and private affairs have been transformed into public events. The intent and provisions of the Act are supported by, among others, the Doctors' Reform Society, the Euthanasia Society, and the AIDS Council of New South Wales. They are opposed by the Australian Medical Association (AMA),2 the Australian Association for Hospice and Palliative Care,3 mainstream religions, Right To Life Australia, and organisations representing the aged and those with disabilities. The Act has been challenged in the High Court of Australia by Dr Chris Wake, the President of the Northern Territory Branch of the AMA, and Dr Djiniyinni Gondarra, an Aboriginal minister of the Uniting Church, who sought special leave to appeal the decision of the Northern Territory Supreme Court upholding the validity of the Northern Territory euthanasia law. The High Court has adjourned the hearing of this application,4 pending the outcome of the Euthanasia Laws Bill introduced in the Federal Parliament of Australia by Mr Kevin Andrews, a Member of the House of Representatives. The intention of the Bill is to deny the Northern Territory legislative power over euthanasia, and to render Northern Territory law null and void. It has passed through the Lower House, and the Australian Senate has referred the Euthanasia Laws Bill to its Legal and Constitutional Legislation Committee, which reports to the Senate in late February this year. Despite the strong arguments advanced by both sides of the debate, a critical component absent from the assertions are actual data on end-of-life medical decisions. Most Australian surveys have used hypothetical models.5-9 The limitations of these studies include notional concepts; inconsistent definitions of euthanasia and other medical decisions at the end of life; lack of information about non-responders to surveys; and lack of validation. Doubts have also been expressed about the representativeness of the cohorts sampled. Despite these qualifications, general trends have emerged: there is majority community support for euthanasia or physician-assisted suicide9,10 and for legislation to allow these practices.9 However, the converse is true for the majority of the medical profession.8,9 Despite this medical disapproval, there is evidence that euthanasia and physician-assisted suicide are practised by some Australian doctors.5-7 Similar findings have been reported in the United Kingdom.11 However, these surveys give no quantitative indication of the extent of these practices in Australia. In this issue of the Journal, Kuhse and her colleagues report such data, obtained by an adaptation of the methods used to determine these practices in the Netherlands.12,13
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In the Netherlands, euthanasia and physician-assisted suicide have
been accepted for over 20 years. While these practices are illegal,
and punishable by imprisonment -- 12 years for euthanasia and 3 years
for physician-assisted suicide -- they are condoned by strong public
support and have a legal basis in the force majeure, whereby
the doctor must act.14
Dutch doctors can be reasonably sure that they will not be
prosecuted if they follow the guidelines for the practice of
euthanasia issued in 1984 by the Royal Dutch Medical Association and
endorsed by the Dutch Government.14 End-of-life medical decisions in
the Netherlands have been scrutinised by two government-initiated
surveys, one in 1990,12 and
the other in 1995.13 The
latter survey conducted two separate studies: one based on
interviews of a stratified sample of doctors, and the other on
responses to questionnaires mailed to physicians identified on
death certificates of about 6000 deaths (in the Netherlands, for all
deaths the cause must be reported on a uniform death certificate,
forwarded to a central authority -- Statistics Netherlands). In the
study of Kuhse et al. an English version of the Dutch questionnaire was
forwarded to 3000 Australian doctors, stratified to mimic the broad
categories of doctors in the Dutch study. The categories and
definitions of end-of-life medical decisions in both studies were
identical. A broad overview of the outcomes of the Australian and
Dutch studies is of interest.
Kuhse et al. report that end-of-life medical decisions were made in approximately 65% of deaths in Australia (corresponding Dutch 1995 estimate, 42%). The estimated Australian incidences for specific end-of-life medical decisions in 1995 were: euthanasia, 1.7% (corresponding Dutch 1995 estimate, 2.4%); physician-assisted suicide, 0.1% (0.2%); ending of life without the patient's explicit request, 3.5% (0.7%); alleviation of pain and symptoms with opioids, with probable life-shortening effects, 30.9% (19.1%); and decisions to forgo treatment, 28.6% (20.2%). The estimated time (days) by which life was shortened by end-of-life medical decisions was comparable in the two studies. How does the Australian and Dutch experience compare with that in other developed industrialised countries? In the United States, euthanasia and physician-assisted suicide are illegal. However, the US Supreme Court will decide later this year whether to uphold the decisions of two US Courts of Appeals to permit doctors to help terminally ill patients commit suicide.15 In a recent survey of physicians in the State of Washington,16 12% said that they had been asked in the last 12 months to assist suicide and 4% had been asked to perform euthanasia; physicians had complied with a quarter of the euthanasia requests, giving a percentage for euthanasia comparable with that found by Kuhse et al. in Australia. The American Hospital Association has estimated that about 70% of US hospital deaths occur after decisions to forgo treatment,17 but there are no readily retrievable US data on how often the use of opioids for symptom relief in terminally ill patients has hastened death. Will the report by Kuhse et al. influence the anti- and pro-euthanasia positions in Australia? Considering the intransigent attitudes of both groups, this seems unlikely. Those who support euthanasia will argue that the findings of Kuhse et al. of the practice of both euthanasia and physician-assisted suicide, and their large estimate for the number of patients for whom end-of-life medical decisions were made without an explicit patient request (albeit more than 50% were mentally not competent), warrant the development of guidelines, and independent audits to assure compliance. Legislation for euthanasia is the best way to ensure this. Moreover, removal of a legal threat by decriminalisation will also remove the need for anonymity and allow an open review of practices. Proponents will further argue that the longitudinal data from the 1990 and 1995 Dutch studies indicate that fears about the "slippery slope" (such as voluntary euthanasia leading to non-voluntary euthanasia) are not justified. For the proponents of euthanasia the Australian estimates for end-of-life medical decisions, other than for euthanasia and physician-assisted suicide, will represent experiences in which patients are presumed to have endured pain and suffering, and which, out of respect for autonomy and compassion, they should be able to relieve by choosing euthanasia. For many supporters of euthanasia and physician-assisted suicide, the distinction between euthanasia and refusal of treatment, or the use of palliative treatments that may hasten death, is logically, philosophically and morally ambiguous. These "moral-equivalence" arguments have been challenged (see Ashby, this issue of Journal). For opponents of euthanasia the findings of Kuhse et al. will be seen as potent reasons for enhancing access to, and quality of, palliative-hospice care and mental health services in Australia. For many, the findings of both the Australian and Dutch studies will not extinguish fears of the "slippery slope", at the end of which are loss of the sanctity of life, a broadening of the criteria for euthanasia, and a change in the values of society and the ethos of medicine. For others, the study findings will highlight the complexities of clinical decisions and circumstances, which, in themselves, have been neglected in the euthanasia debate in the medical, legal and ethical arenas; the law and ethics cannot operate in a vacuum. The opponents of euthanasia will argue that, although they respect patient autonomy, this cannot be divorced from the intricacies of the patient-doctor relationship, or, for that matter, the patient-family and other important relationships. Finally, despite the findings of Kuhse et al., opponents of euthanasia legislation will argue that the law lacks the sensitivity and compassion required to deal with such a complex event as dying, and that intrusion of the law into this area will have unforeseen consequences. For the neutralists in the euthanasia debate, the findings of Kuhse et al. will emphasise how little is known about how and where people die in Australia. They will say the results underscore the inadequacies of training programs for the care of the dying, and draw attention to the complexities and vicissitudes of the communications between patients and doctors. Finally, they will call for programs that both explore the issues of death and dying, and ensure that the circumstances of this inevitable event are compassionate and humane. Martin B Van Der Weyden
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© 1997 Medical Journal of Australia.
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