Two Decades of Research on Euthanasia from the Netherlands. What Have We Learnt and What Questions Remain?

Two decades of research on euthanasia in the Netherlands have resulted into clear insights in the frequency and characteristics of euthanasia and other medical end-of-life decisions in the Netherlands. These empirical studies have contributed to the quality of the public debate, and to the regulating and public control of euthanasia and physician-assisted suicide. No slippery slope seems to have occurred. Physicians seem to adhere to the criteria for due care in the large majority of cases. Further, it has been shown that the majority of physicians think that the euthanasia Act has improved their legal certainty and contributes to the carefulness of life-terminating acts. In 2005, eighty percent of the euthanasia cases were reported to the review committees. Thus, the transparency envisaged by the Act still does not extend to all cases. Unreported cases almost all involve the use of opioids, and are not considered to be euthanasia by physicians. More education and debate is needed to disentangle in these situations which acts should be regarded as euthanasia and which should not. Medical end-of-life decision-making is a crucial part of end-of-life care. It should therefore be given continuous attention in health care policy and medical training. Systematic periodic research is crucial for enhancing our understanding of end-of-life care in modern medicine, in which the pursuit of a good quality of dying is nowadays widely recognized as an important goal, in addition to the traditional goals such as curing diseases and prolonging life.     

Physician assisted suicide: new developments in the Netherlands

Until recently, physician assisted suicide was dealt with on the same basis as active voluntary euthanasia in the Netherlands. Over the last years, several cases relating to assistance in suicide of mental patients did raise specific issues, not addressed so far in the debate on euthanasia. One of these cases resulted in a Supreme Court decision. The paper summarizes this decision and comments on it from a legal point of view.     

PHYSICIAN ASSISTED SUICIDE: NEW DEVELOPMENTS IN THE NETHERLANDS

Until recently, physician assisted suicide was dealt with on the same basis as active voluntary euthanasia in the Netherlands. Over the last years, several cases relating to assistance in suicide of mental patients did raise specific issues, not addressed so far in the debate on euthanasia. One of these cases resulted in a Supreme Court decision. The paper summarizes this decision and comments on it from a legal point of view.     

Euthanasia across the North Sea

The United Kingdom and The Netherlands are separated by a narrow stretch of sea but in terms of an understanding of euthanasia they seem to be light years apart. An attempt to bridge the information gap seems in order.The position paper on euthanasia published by the Royal Dutch Medical Association contains 16 typed pages.¹ In contrast, the report on euthanasia issued by a working party of the British Medical Association is 80 pages in small print.²     

Alberta euthanasia survey: 2. Physicians' opinions about the acceptance of active euthanasia as a medical act and the reporting of such practice.

OBJECTIVE: To ascertain the opinions of Alberta physicians about the acceptance of active euthanasia as a medical act (the "medicalization" of active euthanasia) and the reporting of colleagues practising active euthanasia, as well as the sociodemographic correlates. DESIGN: Cross-sectional survey of a random sample of Alberta physicians, grouped by site and type of practice. SETTING: Alberta. PARTICIPANTS: A total of 2002 (46%) of the licensed physicians in Alberta were mailed a 38-item questionnaire in May through July 1991; usable responses were returned by 1391 (69%). RESULTS: Although only 44% of the respondents considered active euthanasia morally "right" at least 70% opted to medicalize the practice if it were legal by restricting it to be performed by physicians and to be taught at medical sites. Even though active euthanasia is criminal homicide in Canada, 33% of the physicians stated that they would not report a colleague participating in the act of anyone, and 40% and 60% stated that they would not report a colleague to medical or legal authorities respectively. Acceptance or rejection of active euthanasia as a medical act was strongly related to religious affiliation and activity (p < 0.01). CONCLUSIONS: This survey about active euthanasia revealed profound incongruities in the opinions of the sample of Alberta physicians concerning their ethical and social duties in the practice of medicine. These data highlight the need for relevant modifications of health education policies concerning biomedical ethics and physicians'' obligations to society.     

Final report of the Netherlands State Commission on Euthanasia: an English summary

An unofficial summary is provided of the Final Report of the Netherlands State Commission on Euthanasia, submitted to the Minister of Welfare, Health and Cultural Affairs and the Minister of Justice on 19 Aug 1985. It describes the establishment of the State Commission, its working methods, and its recommendations for changes in the Criminal Code with regard to euthanasia and assisted suicide. The Commission proposes that the Code be amended so that the intentional termination of another person's life at the latter's request would not be an offense if carried out by a doctor on a patient who is "in an untenable situation with no prospect of improvement." It makes recommendations regarding minors, the mentally handicapped, and prisoners, and regarding procedures for funeral arrangements and death certificates, the noninvolvement of parties other than patients and physicians in decision making, and the preparation and dispensing of drugs designed to terminate life.     

On euthanasia: exploring psychological meaning and attitudes in a sample of Mexican physicians and medical students

Euthanasia has become the subject of ethical and political debate in many countries including Mexico. Since many physicians are deeply concerned about euthanasia, due to their crucial participation in its decision and implementation, it is important to know the psychological meaning that the term 'euthanasia' has for them, as well as their attitudes toward this practice. This study explores psychological meaning and attitudes toward euthanasia in 546 Mexican subjects, either medical students or physicians, who were divided into three groups: a) beginning students, b) advanced students, and c) physicians. We used the semantic networks technique, which analyzed the words the participants associated with the term 'euthanasia'. Positive psychological meaning, as well as positive attitudes, prevailed among advanced students and physicians when defining euthanasia, whereas both positive and negative psychological meaning together with more ambivalent attitudes toward euthanasia predominated in beginning students. The findings are discussed in the context of a current debate on a bill proposing active euthanasia in Mexico City.     

Euthanasia, ethics and economics

The financial aspects of legalizing active euthanasia rarely have been discussed. H?yry and H?yry argue that there are no good grounds for ignoring the connection between euthanasia and the need to conserve medical resources. Their paper is intended to offer a rough sketch of how ethics and economics may legitimately work side by side in the debate over euthanasia.     

The ethics of euthanasia: advocates' perspectives

The Netherlands is currently the only country in the world in which euthanasia is legally permissible. More specifically, Dutch law (briefly explained) allows that a doctor terminates the life of a patient of hers on his voluntary, well-considered and sustained request, if he is suffering unbearably and hopelessly. The aim of this paper is to reconstruct the Dutch debate on the moral permissibility of euthanasia so as to clarify and strengthen the various views that can be advanced in support of euthanasia. On the one view, The Pure Autonomy View (TPAV), the justification of euthanasia rests solely on the principle of respect for autonomy. That is, the reason for performing and permitting euthanasia is the patient's voluntary, well-considered and sustained, in one word: autonomous, request for euthanasia. On the alternative view, The Joint View (TJV), the principle of respect for autonomy and the principle of beneficence morally justify euthanasia together . That is, euthanasia is ethical if and partly because, since the patient is suffering unbearably and hopelessly, euthanasia is in his interest. According to this paper, there is no easy argument for one of these views rather than the other. Instead, as yet both TPAV and TJV seem inherently problematic. TPAV is unable to give a doctor a reason for performing euthanasia that appeals to her in her capacity as a doctor, such as relief of suffering. And TJV begs the question – for example, if a state were to legalize euthanasia on grounds of TJV, it would force the view upon its citizens that it may be in a person's interest to die.     

The legal investigation of a decision not to operate on an infant with Down's syndrome and a duodenal atresia: a report from the Netherlands

It is well-known that in the Netherlands it has for several years been possible to carry out voluntary euthanasia quite openly, provided certain strict conditions are fulfilled. This situation has arisen because courts in the Netherlands have decided that doctors who end the lives of their patients under these conditions are in a "conflict of duties" situation, and therefore should not be convicted of any criminal offence. It has, however, not been known what view a Netherlands court might take about life and death decisions concerning patients who are not capable of giving consent -- for example, infants. This report briefly outlines my experience in the case of an infant with Down's syndrome and duodenal atresia -- a blockage of the digestive system that must be operated upon if the infant is to survive. A decision was taken not to operate, and this decision resulted in the Netherlands courts considering whether criminal proceedings were justified.     

The Extension of Belgium’s Euthanasia Law to Include Competent Minors

Following considerable debate, the practice of euthanasia was legalized in Belgium in 2002, thereby making Belgium one of the few places in the world where this practice is legal. In 2014 the law was amended for the first time. The 2014 amendment makes euthanasia legally possible for all minors who repeatedly and voluntarily request euthanasia and who are judged to possess “capacity of discernment” (regardless of their biological age), as well as fulfil a number of other criteria of due care. This extension of the 2002 euthanasia law generated a lot of national and international debate and has been applauded by many and heavily criticized by others. This evolution is clearly of interest to end-of-life debates in the entire world. This paper will therefore describe how this amendment came to get passed using official documents from Belgium's Senate and Chamber of Representatives where this amendment was discussed and subsequently passed. Next, some of the most commonly given arguments in favour of the law are identified, as well as the arguments most often voiced against the amendment. All these arguments will be expanded upon and it will be examined whether they hold up to ethical scrutiny. Analysing the official documents and identifying the most commonly voiced arguments gives valuable insight into how Belgium came to amend its euthanasia law and why it did so in 2014. It also becomes clear that although the current amendment is often seen as far-reaching, more radical ideas were proposed during the drafting of the law. Also, in analysing those arguments in favour of the amendment and those against, it is clear that the validity of some of these is questionable.     

Physician-assisted deaths under the euthanasia law in Belgium: a population-based survey

Background

Legalization of euthanasia and physician-assisted suicide has been heavily debated in many countries. To help inform this debate, we describe the practices of euthanasia and assisted suicide, and the use of life-ending drugs without an explicit request from the patient, in Flanders, Belgium, where euthanasia is legal.

Methods

We mailed a questionnaire regarding the use of life-ending drugs with or without explicit patient request to physicians who certified a representative sample (n = 6927) of death certificates of patients who died in Flanders between June and November 2007.

Results

The response rate was 58.4%. Overall, 208 deaths involving the use of life-ending drugs were reported: 142 (weighted prevalence 2.0%) were with an explicit patient request (euthanasia or assisted suicide) and 66 (weighted prevalence 1.8%) were without an explicit request. Euthanasia and assisted suicide mostly involved patients less than 80 years of age, those with cancer and those dying at home. Use of life-ending drugs without an explicit request mostly involved patients 80 years of older, those with a disease other than cancer and those in hospital. Of the deaths without an explicit request, the decision was not discussed with the patient in 77.9% of cases. Compared with assisted deaths with the patient’s explicit request, those without an explicit request were more likely to have a shorter length of treatment of the terminal illness, to have cure as a goal of treatment in the last week, to have a shorter estimated time by which life was shortened and to involve the administration of opioids.

Interpretation

Physician-assisted deaths with an explicit patient request (euthanasia and assisted suicide) and without an explicit request occurred in different patient groups and under different circumstances. Cases without an explicit request often involved patients whose diseases had unpredictable end-of-life trajectories. Although opioids were used in most of these cases, misconceptions seem to persist about their actual life-shortening effects.Euthanasia and physician-assisted suicide are heavily debated issues in medical practice. In recent years, three European countries (Belgium and the Netherlands in 2002, and Luxemburg in 2009) and two US states (Oregon in 1997 and Washington State in 2009) decriminalized euthanasia and physician-assisted suicide under formal conditions.^1–5 Canada is among a number of countries where the debate over legalization has flared up, with a proposed bill reaching Parliament and a pro-euthanasia proposal by the Quebec College of Physicians.⁶Understandably, the issue of euthanasia triggers much emotion and can be fraught with speculative arguments. Opponents of euthanasia often argue that legalizing the procedure will lead to a rise in the use of life-ending drugs without a patient’s explicit request, especially in vulnerable patient groups.^7–10 Thus far, however, no indications of this have been found in studies of physician-assisted deaths before and after legalization in Belgium and the Netherlands.^9,11,12 In Belgium, the percentage of deaths in which life-ending drugs were used remained stable, and the proportion without an explicit request from the patient decreased.¹² Other studies have shown that euthanasia, physician-assisted suicide and the use of life-ending drugs without explicit patient request are not confined to countries where physician-assisted death is legal.^13–16In addition to knowing the overall occurrence of physician-assisted death, it is equally important for an adequately informed, empirically based debate to know its performance in vulnerable patient groups and the care put into the decision and performance. In light of legalization and its alleged effects on the use of life-ending drugs without patient request, it is also important to map similarities and differences between euthanasia and the use of life-ending drugs without explicit patient request. In this article, we report our investigation of demographic and clinical characteristics associated with physician-assisted deaths in Flanders, Belgium; the involvement of the patient, relatives and other caregivers in the decision-making process; reasons for the decisions; aspects of the treatment trajectory; and details of the performance in terms of drug use and the people administering the life-ending drugs.     

Legal Standards for Brain Death and Undue Influence in Euthanasia Laws

A major appellate court decision from the United States seriously questions the legal sufficiency of prevailing medical criteria for the determination of death by neurological criteria. There may be a mismatch between legal and medical standards for brain death, requiring the amendment of either or both. In South Australia, a Bill seeks to establish a legal right for a defined category of persons suffering unbearably to request voluntary euthanasia. However, an essential criterion of a voluntary decision is that it is not tainted by undue influence, and this Bill falls short of providing adequate guidance to assess for undue influence.     

Managing intentions: the end-of-life administration of analgesics and sedatives, and the possibility of slow euthanasia

There has been much debate regarding the 'double-effect' of sedatives and analgesics administered at the end-of-life, and the possibility that health professionals using these drugs are performing 'slow euthanasia.' On the one hand analgesics and sedatives can do much to relieve suffering in the terminally ill. On the other hand, they can hasten death. According to a standard view, the administration of analgesics and sedatives amounts to euthanasia when the drugs are given with an intention to hasten death. In this paper we report a small qualitative study based on interviews with 8 Australian general physicians regarding their understanding of intention in the context of questions about voluntary euthanasia, assisted suicide and particularly the use of analgesic and sedative infusions (including the possibility of voluntary or non-voluntary 'slow euthanasia'). We found a striking ambiguity and uncertainty regarding intentions amongst doctors interviewed. Some were explicit in describing a 'grey' area between palliation and euthanasia, or a continuum between the two. Not one of the respondents was consistent in distinguishing between a foreseen death and an intended death. A major theme was that 'slow euthanasia' may be more psychologically acceptable to doctors than active voluntary euthanasia by bolus injection, partly because the former would usually only result in a small loss of 'time' for patients already very close to death, but also because of the desirable ambiguities surrounding causation and intention when an infusion of analgesics and sedatives is used. The empirical and philosophical implications of these findings are discussed.     

End‐of‐life decision‐making and advance care directives in Italy. A report and moral appraisal of recent legal provisions

The present article reviews the state of public debate and legal provisions concerning end‐of‐life decision‐making in Italy and offers an evaluation of the moral and legal issues involved. The article further examines the content of a recent law concerning informed consent and advance treatment directives, the main court pronouncements that formed the basis for the law, and developments in the public debate and important jurisprudential acts subsequent to its approval. The moral and legal grounds for a positive evaluation of this law, which attests that the patient may withhold or withdraw from life‐prolonging treatment, will be offered with reference to liberal approaches and particularly to the frameworks of care and virtue ethics; but reasons will also be offered in order to consider not only the latter but also broader range of end‐of‐life treatment decisions as morally apt options. In this light, we argue in favour of a further development of the Italian legislation to encompass forms of assisted suicide and active euthanasia.     

ADVANCE DIRECTIVES IN THE NETHERLANDS: AN EMPIRICAL CONTRIBUTION TO THE EXPLORATION OF A CROSS‐CULTURAL PERSPECTIVE ON ADVANCE DIRECTIVES

Research Objective: This study focuses on ADs in the Netherlands and introduces a cross‐cultural perspective by comparing it with other countries. Methods: A questionnaire was sent to a panel comprising 1621 people representative of the Dutch population. The response was 86%. Results: 95% of the respondents didn't have an AD, and 24% of these were not familiar with the idea of drawing up an AD. Most of those familiar with ADs knew about the Advanced Euthanasia Directive (AED, 64%). Both low education and the presence of a religious conviction that plays an important role in one's life increase the chance of not wanting to draw up an AD. Also not having experienced a request for euthanasia from someone else, and the inconceivability of asking for euthanasia yourself, increase the chance of not wanting to draw up an AD. Discussion: This study shows that the subjects of palliative care and end‐of‐life‐decision‐making were very much dominated by the issue of euthanasia in the Netherlands. The AED was the best known AD; and factors that can be linked to euthanasia play an important role in whether or not people choose to draw up an AD. This differentiates the Netherlands from other countries and, when it comes to ADs, the global differences between countries and cultures are still so large that the highest possible goals, at this moment in time, are observing and possibly learning from other cultural settings.     

Self‐Euthanasia,the Dutch Experience: In Search for the Meaning of a Good Death or Eu Thanatos

My main purpose in this article is to establish the meaning of a ‘good death’ when death is self‐chosen. I will take as my point of departure the new notion of ‘self‐euthanasia’ and the corresponding practice that has evolved in the Netherlands in recent years. Both physician‐euthanasia and self‐euthanasia refer to an ideal process of a good death, the first being ultimately the physician's responsibility, while the second is definitely the responsibility of the individual choosing to die. However, if we also accept the existence of a fundamental moral difference between ending another person's life and ending your own life, and if we accept this moral difference to be also relevant to the normatively laden good death, then this difference represents a strong reason for preferring self‐euthanasia to physician‐euthanasia.     

Toward a culture-bound syndrome-based insanity defense?

The American Psychiatric Association's recent inclusion of a Glossary of Culture-Bound Syndromes within DSM-IV draws upon decades of medical anthropological and cultural psychiatric research to afford culture-bound syndromes (CBSs) a newfound legitimacy within professional Western psychiatric nosology. While DSM-IV's recognition of the CBS concept as a category of psychosocial distress has important clinical implications for mental health care practitioners throughout the world, it also has significant legal implications. Given that several CBSs involve a degree of psychological impairment that may satisfy the standard for legal insanity under certain circumstances, this essay focuses on the potential emergence of an insanity defense based on the claim that an immigrant or minority defendant was suffering from a CBS at the time of his or her criminal act. Aimed at initiating interdisciplinary debate over the reification of the CBS concept, the essay discusses the theoretical ambiguity and status of CBSs within professional Western psychiatry, describes what a CBS-based insanity defense might look like, and considers the relevant challenges facing medical anthropologists and cultural psychiatrists, on the one hand, and legal practitioners, on the other. The essay identifies a pressing need for interdisciplinary debate concerning the validity, scope, and viability of CBS-based insanity defenses.     

German law on circumcision and its debate: How an ethical and legal issue turned political

The article aims to illuminate the recent debate in Germany about the legitimacy of circumcision for religious reasons. The aim is both to evaluate the new German law allowing religious circumcision, and to outline the resulting conflict between the surrounding ethical and legal issues. We first elucidate the diversity of legal and medical views on religious circumcision in Germany. Next we examine to what extent invasive and irreversible physical interventions on infant boys unable to given their consent should be carried out for non‐medical reasons. To this end, the potential benefits and harms of circumcision for non‐medical reasons are compared. We argue that circumcision does not provide any benefits for the ‘child as a child’ and poses only risks to boys. We then set out to clarify and analyse political (rather than ethical) justifications of the new circumcision law. We demonstrate through this analysis how the circumcision debate in Germany has been transformed from a legal and ethical problem into a political issue, due at least in part to Germany's unique historical context. Although such a particular political sensibility is entirely comprehensible, it raises particular problems when it comes to framing and responding to medical ethical issues – as in the case of religious circumcision.