Recent articles in biomedical ethics have begun to explore both the relevance of family interests in treatment decisions and the resultant ramifications for physicians' obligations to patients. This article addresses two important questions regarding physicians' obligations vis-a-vis family interests: (1) What should a physician do when the exercise of patient autonomy threatens to negate the patient's moral obligations to other family members? (2) Does respect for patient autonomy typically require efforts on the part of physicians to keep patients' treatment decisions (...) from being influenced by family considerations? A series of clarifications about the concept of autonomy is also presented. (shrink)

When Richard Lamm made the statement that old people have a duty to die, it was generally shouted down or ridiculed. The whole idea is just too preposterous to entertain. Or too threatening. In fact, a fairly common argument against legalizing physician-assisted suicide is that if it were legal, some people might somehow get the idea that they have a duty to die. These people could only be the victims of twisted moral reasoning or vicious social pressure. It goes without (...) saying that there is no duty to die. (shrink)

Introduction: In The Netherlands, physicians have to be convinced that the patient suffers unbearably and hopelessly before granting a request for euthanasia. The extent to which general practitioners (GPs), consulted physicians and members of the euthanasia review committees judge this criterion similarly was evaluated. Methods: 300 GPs, 150 consultants and 27 members of review committees were sent a questionnaire with patient descriptions. Besides a “standard case” of a patient with physical suffering and limited life expectancy, the descriptions included cases in (...) which the request was mainly rooted in psychosocial or existential suffering, such as fear of future suffering or dependency. For each case, respondents were asked whether they recognised the case from their own practice and whether they considered the suffering to be unbearable. Results: The cases were recognisable for almost all respondents. For the “standard case” nearly all respondents were convinced that the patient suffered unbearably. For the other cases, GPs thought the suffering was unbearable less often (2–49%) than consultants (25–79%) and members of the euthanasia review committees (24–88%). In each group, the suffering of patients with early dementia and patients who were “tired of living” was least often considered to be unbearable. Conclusions: When non-physical aspects of suffering are central in a euthanasia request, there is variance between and within GPs, consultants and members of the euthanasia committees in their judgement of the patient’s suffering. Possible explanations could be differences in their roles in the decision-making process, differences in experience with evaluating a euthanasia request, or differences in views regarding the permissibility of euthanasia. (shrink)

Objective: To explore the experiences of people with a “terminal illness”, focusing on the patients’ perspective of euthanasia and assisted suicide.Method: A qualitative study using narrative interviews was conducted throughout the UK. The views of the 18 people who discussed euthanasia and assisted suicide were explored. These were drawn from a maximum variation sample, who said that they had a “terminal” illness, malignant or non-malignant.Results: That UK law should be changed to allow assisted suicide or voluntary euthanasia was felt strongly (...) by most people. Those who had seen others die were particularly convinced that this should be a right. Some had multiple reasons, including pain and anticipated pain, fear of indignity, loss of control and cognitive impairment. Those who did not want to be a burden also had other reasons for wanting euthanasia. Suicide was contemplated by a few, who would have preferred a change in the law to allow them to end their lives with medical help and in the company of family or friends. The few who opposed a change in UK law, or who felt ambivalent, focused on involuntary euthanasia, cited religious reasons or worried that new legislation might be open to abuse.Conclusion: Qualitative research conducted on people who know they are nearing death is an important addition to the international debate on euthanasia and assisted suicide. Those who had seen others die were particularly convinced that the law should be changed to allow assisted death. (shrink)

Background: Caring for terminally ill patients is a meaningful task, however the patient’s suffering can be a considerable burden and cause of frustration.Objectives: The aim of this study is to describe the experiences of general practitioners in The Netherlands in dealing with a request for euthanasia from a terminally ill patient.Methods: The data, collected through in-depth interviews, were analysed according to the constant comparative method.Results: Having to face a request for euthanasia when attempting to relieve a patient’s suffering was described (...) as a very demanding experience that GPs generally would like to avoid. Nearly half of the GPs strive to avoid euthanasia or physician assisted suicide because it was against their own personal values or because it was emotional burdening to be confronted with this issue. They explained that by being directed on promoting a peaceful dying process, or the quality of end-of-life of a patient by caring and supporting the patient and the relatives it was mainly possible to shorten patient’s suffering without “intentionally hastening a patient’s death on his request”. The other GPs explained that as sometimes the suffering of a patient could not be lessened they were open to consider a patient’s request for euthanasia or physician assisted suicide. They underlined the importance of a careful decision-making process, based on finding a balance between the necessity to shorten the patient’s suffering through euthanasia and their personal values.Conclusion: Dealing with requests for euthanasia is very challenging for GPs, although they feel committed to alleviate a patient’s suffering and to promote a peaceful death. (shrink)

Western philosophy has been powerfully influenced by a paradigm of personal agency that is linked to an individualistic conception of autonomy. This essay contrasts this conception with an alternative understanding that recognizes a social component built into the very meaning of autonomy. After reviewing feminist critiques of the dominant conception of autonomy, I develop the broad outlines of a relational view and apply this reconceptualization to a concrete situation in order to show how this altered view reconfigures understanding of the (...) participants' relationships and each of their personal perspectives. The situation chosen, physician‐assisted suicide, is intended principally to illustrate one respect in which a relational conception of autonomy reframes a controversial moral issue and reveals perspectives toward it that are likely to be obscured when autonomy is viewed through the lens of the dominant individualistic conception. My principal aim is to show that when autonomy is understood relationally, respecting others' autonomy is likely to be a far more complex issue than is apparent within the standard conception, both for those with professional responsibilities and often for personal intimates as well. (shrink)

Background Since the enactment of the euthanasia law in the Netherlands, there has been a lively public debate on assisted dying that may influence the way patients talk about euthanasia and physician-assisted suicide with their physicians and the way physicians experience the practice of EAS. Aim To show what developments physicians see in practice and how they perceive the influence of the public debate on the practice of EAS. Methods We conducted a secondary analysis of in-depth interviews with 28 Dutch (...) physicians who had experience with a complex case of EAS. Respondents were recruited both by the network of physicians working for SCEN as well as via a national questionnaire, wherein participating physicians could indicate their willingness to be interviewed. Results Three themes came up in analysing the interviews. First, the interviewed physicians experienced a change in what patients would expect from them: from a role as an involved caregiver to being the mere performer of EAS. Second, interviewees said that requests for EAS based on non-medical reasons came up more frequently and wondered if EAS was the right solution for these requests. Last, respondents had the impression that the standards of EAS are shifting and that the boundaries of the EAS regulation were stretched. Conclusions The perceived developments could make physicians less willing to consider a request for EAS. Our results also raise questions about the role of physicians and of EAS in society. (shrink)

Euthanasia and assisted suicide was openly permitted but not technically legal in the Netherlands for decades. In 2002, it was formally legalised through the Termination of Life on Request and Assisted Suicide Review Procedures Act, subject to two main criteria: the patient had to be capable of making voluntary decisions and the patient had to experience unbearable suffering without prospect of improvement. Within the Netherlands, EAS has wide acceptance, and the public in general seems to favour a liberal interpretation of (...) both of these requirements. Physicians are expected to use ‘their own moral compass’ to decide about personal participation, and it is generally possible and permissible to find a substitute physician if the patient meets the legally required criteria but the physician is not comfortable assisting. Over the years, multiple quantitative and qualitative studies have explored the Dutch practice of EAS,1–3 but relatively little is known about the edges of what counts as meeting these criteria and how acceptable the practice is for physicians who participate. The study by Snijdewind et al gives a glimpse of these boundaries and suggests that at least sometimes the criteria are being stretched and adapted to meet the perceived needs of patients, and some participating physicians are relatively uncomfortable with some of the requests with which they are faced.4 Just how rare or common these ‘edgy’ cases are within the larger practice of EAS in the Netherlands cannot be answered by …. (shrink)

In this article I intend to describe an issue of the Dutch euthanasia practice that is not common knowledge. After some general introductory descriptions, by way of formulating a frame of reference, I shall describe the effects of this practice on patients, physicians and families, followed by a more philosophical reflection on the significance of these effects for the assessment of the authenticity of a request and the nature of unbearable suffering, two key concepts in the procedure towards euthanasia or (...) physician-assisted suicide. This article does not focus on the arguments for or against euthanasia and the ethical justification of physician-assisted dying. These arguments have been described extensively in Kimsma and Van Leeuwen (Asking to die. Inside the Dutch debate about euthanasia, Kluwer Academic Publishers, Dordrecht, 1998). (shrink)

Should the authority to make treatment decisions be extended to the competent patient's family? Neither arguments from fairness nor communitarian concerns justify such an infringement on patient autonomy.

Background One of the objectives of medicine is to relieve patients' suffering. As a consequence, it is important to understand patients' perspectives of suffering and their ability to cope. However, there is poor insight into what determines their suffering and their ability to bear it. Purpose To explore the constituent elements of suffering of patients who explicitly request euthanasia or physician-assisted suicide (EAS) and to better understand unbearable suffering from the patients' perspective. Patients and methods A qualitative study using in-depth (...) face-to-face interviews was conducted with 31 patients who had requested EAS. The grounded theory approach was used to analyse the data. Results Medical, psycho-emotional, socio-environmental and existential themes contributed to suffering. Especially fatigue, pain, decline, negative feelings, loss of self, fear of future suffering, dependency, loss of autonomy, being worn out, being a burden, loneliness, loss of all that makes life worth living, hopelessness, pointlessness and being tired of living were constituent elements of unbearable suffering. Only patients with a psychiatric (co)diagnosis suffered unbearably all the time. Conclusions Unbearable suffering is the outcome of an intensive process that originates in the symptoms of illness and/or ageing. According to patients, hopelessness is an essential element of unbearable suffering. Medical and social elements may cause suffering, but especially when accompanied by psycho-emotional and existential problems suffering will become ‘unbearable’. Personality characteristics and biographical aspects greatly influence the burden of suffering. Unbearable suffering can only be understood in the continuum of the patients' perspectives of the past, the present and expectations of the future. (shrink)

This paper presents a systematic account of ethical issues actualised in different areas, as well as at different levels and stages of health care, by introducing organisational and other procedures that embody a shift towards person centred care and shared decision-making (PCC/SDM). The analysis builds on general ethical theory and earlier work on aspects of PCC/SDM relevant from an ethics perspective. This account leads up to a number of theoretical as well as empirical and practice oriented issues that, in view (...) of broad advancements towards PCC/SDM, need to be considered by health care ethics researchers. Given a PCC/SDM-based reorientation of health care practice, such ethics research is essential from a quality assurance perspective. (shrink)

BackgroundAn important principle underlying the Dutch Euthanasia Act is physicians' responsibility to alleviate patients' suffering. The Dutch Act states that euthanasia and physician-assisted suicide are not punishable if the attending physician acts in accordance with criteria of due care. These criteria concern the patient's request, the patient's suffering (unbearable and hopeless), the information provided to the patient, the presence of reasonable alternatives, consultation of another physician and the applied method of ending life. To demonstrate their compliance, the Act requires physicians (...) to report euthanasia to a review committee. We studied which arguments Dutch physicians use to substantiate their adherence to the criteria and which aspects attract review committees' attention.MethodsWe examined 158 files of reported euthanasia and physician-assisted suicide cases that were approved by the review committees. We studied the physicians' reports and the verdicts of the review committees by using a checklist.ResultsPhysicians reported that the patient's request had been well-considered because the patient was clear-headed (65%) and/or had repeated the request several times (23%). Unbearable suffering was often substantiated with physical symptoms (62%), function loss (33%), dependency (28%) or deterioration (15%). In 35%, physicians reported that there had been alternatives to relieve patients' suffering which were refused by the majority. The nature of the relationship with the consultant was sometimes unclear: the consultant was reported to have been an unknown colleague (39%), a known colleague (21%), otherwise (25%), or not clearly specified in the report (24%). Review committees relatively often scrutinized the consultation (41%) and the patient's (unbearable) suffering (32%); they had few questions about possible alternatives (1%).ConclusionDutch physicians substantiate their adherence to the criteria in a variable way with an emphasis on physical symptoms. The information they provide is in most cases sufficient to enable adequate review. Review committees' control seems to focus on (unbearable) suffering and on procedural issues. (shrink)

The prevalent ethic of patient autonomy ignores family interests in medical treatment decisions. Acknowledging these interests as legitimate forces basic changes in ethical theory and the moral practice of medicine.

We are beginning to recognize that the prevalent ethic of patient autonomy simply will not do. Since demands for health care are virtually unlimited, giving autonomous patients the health care they want will bankrupt our health care system. We can no longer simply buy our way out of difficult questions of justice by expanding the health care pie until there is enough to satisfy the wants and needs of everyone. The requirements of justice and the needs of other patients must (...) temper the claims of autonomous patients. (shrink)

The dominant, individualistic understanding of autonomy that features in clinical practice and research is underpinned by the idea that people are, in their ideal form, independent, self-interested and rational gain-maximising decision-makers. In recent decades, this paradigm has been challenged from various disciplinary and intellectual directions. Proponents of ‘relational autonomy’ in particular have argued that people’s identities, needs, interests – and indeed autonomy – are always also shaped by their relations to others. Yet, despite the pronounced and nuanced critique directed at (...) an individualistic understanding of autonomy, this critique has had very little effect on ethical and legal instruments in clinical practice and research so far. In this article, we use four case studies to explore to what extent, if at all, relational autonomy can provide solutions to ethical and practical problems in clinical practice and research. We conclude that certain forms of relational autonomy can have a tangibl... (shrink)

Medical decisionmaking would be a messier but better thing if it honored what is morally valuable about patients' families. The concerns of intimates have a legitimate call upon us even when we are ill.

End-of-life decision making constitutes a major challenge for bioethical deliberation and political governance in modern democracies: On the one hand, it touches upon fundamental convictions about life, death, and the human condition. On the other, it is deeply rooted in religious traditions and historical experiences and thus shows great socio-cultural diversity. The bioethical discussion of such cultural issues oscillates between liberal individualism and cultural stereotyping. Our paper confronts the bioethical expert discourse with public moral attitudes. The paper is based on (...) a qualitative study comprising 12 focus group discussions with religious and secular persons in the USA, Germany, and Israel. Considering the respective socio-political and legal frameworks, the thematic analysis focuses on moral attitudes towards end-of-life decision making and explores the complex interplay between individual preferences, culture, and religion. Our findings draw attention to the variety and complexity of cultural and religious aspects of end-of-life decision making. Although there is local consensus that goes beyond radical individualism, positions are not neatly matched with national cultures or religious denominations. Instead, the relevance of the specific situatedness of religious beliefs and cultural communities becomes visible: Their status and role in individual situations, for example, as consensual or conflicting on the level of personal perspectives, family relationships, or broader social contexts, e.g., as a majority or minority culture within a political system. As the group discussions indicate, there are no clear-cut positions anchored in “nationality,” “culture,” or “religion.” Instead, attitudes are personally decided on as part of a negotiated context representing the political, social and existential situatedness of the individual. Therefore, more complex theoretical and practical approaches to cultural diversity have to be developed. (shrink)

The aim of this paper is to ponder the intricate issue of the right to die in dignity by focusing attention on the role of the patient's beloved people. I first provide critical examination of some of the arguments advanced by Ronald Dworkin. I proceed by contemplating relevant scenarios and examining three American court decisions: Saikewicz, Spring and Gray. The first case, Saikewicz, concerns a patient who had no family or other beloved people. I observe that this fact had a (...) significant bearing on the court's ruling not to provide him treatment. The second case, Spring, involves a patient whose family wanted to withhold treatment from him. I argue that we should be cautious of incidents in which the best interests of the patient's beloved people come at the expense of the best interests of the patient. Spring is an example of such a case. The third case, Gray, serves as an example whereby the best interests of the patient coincide with the best interests of her beloved people. I conclude by arguing that attention has to be given to the question of whether the patient's close-ones demonstrate a unified position in regard to the destiny of the patient. Gegenstand des Beitrags ist es, das schwierige Problem des Rechts, in Würde zu sterben, im Hinblick auf die Rolle der Personen zu überdenken, die dem Patienten nahestehen. Der Autor setzt sich zunächst kritisch mit einigen von Ronald Dworkin vorgetragenen Argumenten auseinander. Dann stellt er die relevanten Fallgestaltungen dar und untersucht drei Entscheidungen amerikanischer Gerichte: die Fälle Saikewicz, Spring und Gray. Der erste Fall, Saikewicz, betrifft einen Patienten ohne Familie oder andere ihm nahestehende Personen. Dieser Umstand hatte einen wesentlichen Einfluß auf die Entscheidung des Gerichts, von der Anordnung einer Behandlung des Patienten abzusehen. Im zweiten Fall, Spring, wünschte die Familie, daß der Patient nicht behandelt würde. Der Autor mahnt für alle die Fälle zur Vorsicht, bei denen die Umstände so beschaffen sind, daß das wohlverstandene Interesse der Angehörigen und das des Patienten kollidieren. Der Fall Spring ist ein Beispiel für eine solche Kollisionssituation. Der dritte Fall, Gray, dient als ein Beispiel, in dem sich das wohlverstandene Interesse des Patienten und das der ihm nahestehenden Personen decken. Zuletzt geht es um die Frage, ob die Angehörigen und andere dem Patienten nahestehende Personen in ihren Vorstellungen über das weitere Schicksal des Patienten übereinstimmen oder nicht. Die Frage verdient eine besondere Aufmerksamkeit. (shrink)