Euthanasia: where the Netherlands leads will the world follow?

BMJ 2001;322:1376-1377 ( 9 June ) Editorials

Euthanasia and, to a much lesser extent, physician assisted suicide have been socially accepted and openly practised in the Netherlands for about two decades. The Netherlands' recent legalisation of euthanasia1 merely codifies what already exists and is unlikely to change Dutch practices significantly. The one exception may be to permit a few more cases of euthanasia among children aged 12-18 years. But drawn out deaths in this age group, predominantly from cancer or AIDS, are rare, accounting for fewer than 400 deaths (<0.2% of all deaths) a year in all of the Netherlands. The key question is not whether things will change in the Netherlands, but whether legalisation of euthanasia and physician assisted suicide there will stimulate a trend in other developed countries.

This seems highly unlikely. Certainly in the United States, no state other than Oregon seems poised to take the opportunity presented by the 1997 Supreme Court ruling to legalise euthanasia or physician assisted suicide. Indeed, in the past five years 10 states have passed bills making euthanasia or physician assisted suicide illegal, and bills are pending in five more. In a referendum in 1998, Michigan voters overwhelmingly (70% to 30%) rejected the legalisation of physician assisted suicide, and in 2000, voters in Maine also rejected legalisation. Similarly, in Germany, history makes legalisation unlikely. Even though the current movement is based on the idea that euthanasia should occur only at the patient's own request and opinion polls suggest public support, the legacy of Nazi euthanasia for racial purification, sanctioned by the state and committed by a willing medical profession, makes many German physicians and politicians loath to consider it. There may be similar sentiments in Scandinavian countries, which have been shaken by recent revelations of state sanctioned sterilisation practices. In southern Europe there is reluctance even to conduct surveys on euthanasia and physician assisted suicide: convincing a legislature to legalise these interventions seems inconceivable.

Besides the vagaries of politics, there is something deeper that makes widespread adoption of euthanasia or physician assisted suicide unlikely and even counterproductive. Many recent empirical data expose how irrelevant permitting euthanasia or physician assisted suicide is for ensuring high quality care at the end of life.

Ample evidence exists that the process of dying is less than optimal. Too many dying patients suffer unnecessary physical symptoms such as pain, dyspnoea, nausea, and vomiting; too many suffer untreated depression, anxiety, and hopelessness; and too many feel they have lost their dignity. It is the perception that dying is a painful process filled with unnecessary suffering and indignity that fuels campaigns and public support for legalising euthanasia and physician assisted suicide.

The only real justification for legalising euthanasia or physician assisted suicide is to address this situation. But would it? Probably not. Even in Oregon and the Netherlands euthanasia and physician assisted suicide are used in only a very small minority of deaths. The most recent data from Oregon shows that just 9 in 10 000 deaths (0.09%) occur by legal physician assisted suicide.2 In the Netherlands, even after 20 years of practice and including the cases of involuntary euthanasia that lack contemporaneous consent from the patient and violate the safeguards, just 3.4% of all deaths are by euthanasia and physician assisted suicide.3 These data mean that in Oregon over 99.9% of all deaths and in the Netherlands over 96% occur without the intentional active ending of a life.4 It is true that about three times as many patients in the Netherlands inquire about and ask for euthanasia but do not die by this intervention. Even including these patients, euthanasia and physician assisted suicide play no part in the dying process of 90% of dying people. Consequently, if the objective is to improve the quality of care at the end of life then the battle over legalising euthanasia is an emotionally charged irrelevance.

Indeed, legalisation might even be counterproductive. Time, resources, and energy are always scarce. Focusing on euthanasia and physician assisted suicide means diverting effort away from the more mundane but consequential activities necessary to improve end of life care for the 90% or more of dying patients who will never even vaguely desire euthanasia. Needed reforms include training physicians, nurses, and other health providers to communicate better with dying patients; to manage pain, anorexia, insomnia, fatigue, and other physical symptoms better; and to diagnose and treat depression better.5 They also include getting physicians, especially non-oncologists, comfortable with referring dying patients to hospices and, more importantly, to refer them earlier in the dying process. They also include improving and where necessary developing hospital based palliative care units and
consultation services. Importantly, if we want to facilitate dying at home we need better systems for coordinating and delivering palliative care to terminally ill patients at home.

As simple as these goals are, to bring about the systematic changes necessary to implement them will require major investments in education and delivery systems. Such systemic changes are neither easily nor quickly accomplished. They require breaking old habits and patterns of care and forging new infrastructures. Such changes require sustained hard work on activities that are not particularly high profile. It is time to eschew the spotlight of euthanasia and focus on the unglamorous process of systematic change to help the majority of dying patients.

Ezekiel J Emanuel, director.

Department of Clinical Bioethics, Warren G Magnuson Clinical Center,
National Institutes of Health, Bethesda,MA 20892, USA
(eemanuel@mail.cc.nih.gov)

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