Rurik Löfmark, Tore Nilstun, Colleen Cartwright, Susanne Fische, Agnes van der Heide, Freddy Mortier, Michael Norup, Lorenzo Simonato and Bregje D Onwuteaka-Philipsen for the EURELD Consortium
The book strives for as complete and dispassionate a description of the situation as possible and covers in detail: the substantive law applicable to euthanasia, physician-assisted suicide, withholding and withdrawing treatment, use of pain relief in potentially lethal doses, terminal sedation, and termination of life without a request (in particular in the case of newborn babies); the process of legal development that has led to the current state of the law; the system of legal control and its operation in practice; and, the results of empirical research concerning actual medical practice.
Sky Television’s documentary showing an assisted suicide has provoked a storm in UK tabloids, but the medical ethicist Daniel K Sokol says it has reinforced his belief in the moral permissibility of helping people die in exceptional circumstances.
John Coggon The German National Ethics Council has recently published its Opinion on Self- Determination and Care at the End of Life. 1 The Opinion raises and attempts to resolve issues that are troubling many people in many jurisdictions. Perhaps unsurprisingly, given the well-rehearsed range of views on euthanasia, assisted-suicide, suicide, and care for the dying, the Council’s Opinion is neither extreme in its suppositions nor in its proposals. This may not satisfy campaigners and commentators who sit on the polar edges of the debate, but it represents a predictable compromise, and will satisfy medical practitioners and those who are increasingly concerned with the inadequacy of palliative care for the elderly, the dying, and the chronically sick.
The National Ethics Council has intensively discussed the issues involved in dealing responsibly with dying. It has perused a large volume of material, obtained expert opinions, consulted with doctors and other medical specialists, and held meetings in Augsburg and Münster at which it exposed itself to public debate. The outcome is enshrined in the Opinion now presented. Self-determination and care at the end of life continues the examination of the themes addressed in the Opinion The advance directive published in June 2005. The present analysis, in conjunction with the clarification of terminology here proposed, may facilitate interpretation of the recommendations set out in that Opinion.
There is evidence from outside the UK to show that physicians’ religious beliefs influence their decision making at the end of life. This UK study explores the belief system of consultants, nurse key workers & specialist registrars & their attitudes to decisions which commonly must be taken when caring for individuals who are dying. Results showed that consultants’ religion & belief systems differed from those of nurses & the population they served. Consultants & nurses had statistically significant differences in their attitudes to common end of life decisions with consultants more likely to continue hydration & not withdraw treatment. Nurses were more sympathetic to the idea of PAS for unbearable suffering. This study shows the variability in belief system and attitudes to end of life decision making both within and between clinical groups. The personal belief system of consultants was not shown to affect their overall attitudes to withdrawing life-sustaining treatment or PAS.
The GMC is consulting on new draft guidance, End of life treatment and care: Good practice in decision-making. The new guidance updates and builds on our existing publication Withholding and withdrawing life-prolonging treatments (2002) which clarified what we regarded as acceptable practice in this difficult area of end of life care. Since it was published, there have been significant changes in legislation, case law, public policy and the understanding of the effects of treatments, all of which affect the framework within which end of life care is provided. The GMC has also produced new guidance on Consent: patients and doctors making decisions together (2008) which sets out the broad principles of good decision-making which apply across the range of situations that doctors face, including end of life care. It was agreed that the Withholding and withdrawing guidance should be reviewed and updated to take account of these developments.
Van den Block and colleagues’ paper about end of life decision making and end of life care provides important data to support the debate about physicians’ role in death and dying. Their finding that end-of-life decision making seems to be associated with a high use of palliative care is not surprising, because a protracted dying process with much suffering may be expected to result in both a high use of palliative care and a high frequency of end-of-life decisions, especially for assertive patients with clear preferences concerning the end stage of their lives. More importantly, the study’s results suggest that palliative care is not able to prevent physicians and patients from making medical decisions that hasten death. This may be due to insufficient quality, that should be further improved, but it may also be indicative of principal limitations of palliative care, that apparently cannot address all suffering at the end of life.
A national survey of 3733 UK doctors reporting on the care of 2923 people who had died under their care is reported here. Results show that there was no time to make an ‘end-of-life decision’ (deciding to provide, withdraw or withhold treatment) for 8.5% of those reporting deaths. A further 55.2% reported decisions which they estimated would not hasten death and 28.9% reported decisions they had expected to hasten death. A further 7.4% reported deaths where they had to some degree intended to hasten death. Where patients or someone else had made a request for a hastened death, doctors were more likely to report expecting or at least partly intending to hasten death. Doctors usually made these decisions in consultation with colleagues, relatives and, where feasible, with patients.
Around a third of doctors say they have given drugs to terminally ill patients or withdrawn treatment, knowing or intending that it would shorten their life. A study of doctors in charge of the last hours of almost 3,000 people finds decisions almost always have to be made on whether to give drugs to relieve pain that could shorten life and whether to continue resuscitation and artificial feeding. In 211 cases (7.4%), doctors say they gave drugs or stopped treatment to speed the patient's death. In 825 cases (28.9%), doctors made a decision on treatment that they knew would probably or certainly hasten death. One in 10 patients asked their doctor to help them die faster. What doctors do varies according to their religious beliefs, according to Prof Clive Seale, who carried out the research. But, he said, there was no evidence of a "slippery slope": that deaths of the most vulnerable, such as very elderly women and those with dementia, are being hastened more than others.
Subsequent to an intensive three-year period of reflection, the CMQ is revealing its perspective and conclusions today regarding end-of-life care and euthanasia. The CMQ embraces the point of view of the patient who is confronting imminent and inevitable death. In such a situation, the patient looks to their physician and generally requests that they be able to die without undue suffering and with dignity. Neither surveys, nor attorneys, nor politicians can properly advise the physician and the patient facing this situation. In the majority of cases, the patient and their doctor find the appropriate analgesia that respects the ethical obligation of physicians not to preserve life at any cost, but rather, when the death of a patient appears to be inevitable, to act so that it occurs with dignity and to ensure that the patient obtains the appropriate support and relief.
Objectives: To investigate why physicians label end-of-life acts as either ‘euthanasia/ending of life’ or ‘alleviation of symptoms/palliative or terminal sedation’, and to study the association of such labelling with intended reporting of these acts. Conclusions: Similar cases are not uniformly labelled. However, a physicians’ label is strongly associated with their willingness to report their acts. Differences in how physicians label similar acts impede complete societal control. Further education and debate could enhance the level of agreement about what is physician-assisted dying, and thus should be reported, and what not.