Since its origin, bioethics has attracted the collaboration of few social scientists, and social scientific methods of gathering empirical data have remained unfamiliar to ethicists. Recently, however, the clouded relations between the empirical and normative perspectives on bioethics appear to be changing. Three reasons explain why there was no easy and consistent input of empirical evidence into bioethics. Firstly, interdisciplinary dialogue runs the risk of communication problems and divergent objectives. Secondly, the social sciences were absent partners since the beginning of (...) bioethics. Thirdly, the meta‐ethical distinction between ‘is’ and ‘ought’ created a ‘natural’ border between the disciplines. Now, bioethics tends to accommodate more empirical research. Three hypotheses explain this emergence. Firstly, dissatisfaction with a foundationalist interpretation of applied ethics created a stimulus to incorporate empirical research in bioethics. Secondly, clinical ethicists became engaged in empirical research due to their strong integration in the medical setting. Thirdly, the rise of the evidence‐based paradigm had an influence on the practice of bioethics. However, a problematic relationship cannot simply and easily evolve into a perfect interaction. A new and positive climate for empirical approaches has arisen, but the original difficulties have not disappeared. (shrink)

The majority of Dutch physicians feel pressure when dealing with a request for euthanasia or physician-assisted suicide. This study aimed to explore the content of this pressure as experienced by general practitioners. We conducted semistructured in-depth interviews with 15 Dutch GPs, focusing on actual cases. The interviews were transcribed and analysed with use of the framework method. Six categories of pressure GPs experienced in dealing with EAS requests were revealed: emotional blackmail, control and direction by others, doubts about fulfilling the (...) criteria, counterpressure by patient’s relatives, time pressure around referred patients and organisational pressure. We conclude that the pressure can be attributable to the patient–physician relationship and/or the relationship between the physician and the patient’s relative, the inherent complexity of the decision itself and the circumstances under which the decision has to be made. To prevent physicians to cross their personal boundaries in dealing with EAS request all these different sources of pressure will have to be taken into account. (shrink)

As an ethicist trained in narrative, I wondered what I could offer Dr. Darcy at this point, two weeks after the events he described. And what might I have offered those involved if they had called an ethics consult at the time? One of this physician's implicit questions was, “How might this have unfolded in a better way?”When difficult choices must be made, how can a narrative approach help? A narrativist focuses less on principles, rules, and law than would a (...) philosopher or a lawyer. This is not to say that we ignore the law or are unaware of bioethical principles. But where do we go from there? Narrative offers a mode of engagement that asks different kinds of questions than those that law or philosophy might ask about moral agency, context, and values. (shrink)

Background: Debates over legalisation of physician-assisted suicide or euthanasia often warn of a “slippery slope”, predicting abuse of people in vulnerable groups. To assess this concern, the authors examined data from Oregon and the Netherlands, the two principal jurisdictions in which physician-assisted dying is legal and data have been collected over a substantial period.Methods: The data from Oregon comprised all annual and cumulative Department of Human Services reports 1998–2006 and three independent studies; the data from the Netherlands comprised all four (...) government-commissioned nationwide studies of end-of-life decision making and specialised studies. Evidence of any disproportionate impact on 10 groups of potentially vulnerable patients was sought.Results: Rates of assisted dying in Oregon and in the Netherlands showed no evidence of heightened risk for the elderly, women, the uninsured , people with low educational status, the poor, the physically disabled or chronically ill, minors, people with psychiatric illnesses including depression, or racial or ethnic minorities, compared with background populations. The only group with a heightened risk was people with AIDS. While extralegal cases were not the focus of this study, none have been uncovered in Oregon; among extralegal cases in the Netherlands, there was no evidence of higher rates in vulnerable groups.Conclusions: Where assisted dying is already legal, there is no current evidence for the claim that legalised PAS or euthanasia will have disproportionate impact on patients in vulnerable groups. Those who received physician-assisted dying in the jurisdictions studied appeared to enjoy comparative social, economic, educational, professional and other privileges. (shrink)

Although euthanasia and assisted suicide in people with psychiatric disorders is relatively rare, the increasing incidence of EAS requests has given rise to public and political debate. This study aimed to explore support of the public and physicians for euthanasia and assisted suicide in people with psychiatric disorders and examine factors associated with acceptance and conceivability of performing EAS in these patients. A survey was distributed amongst a random sample of Dutch 2641 citizens and 3000 physicians. Acceptance and conceivability of (...) performing EAS, demographics, health status and professional characteristics were measured. Multivariable logistic regression analyses were performed. Of the general public 53% were of the opinion that people with psychiatric disorders should be eligible for EAS, 15% was opposed to this, and 32% remained neutral. Higher educational level, Dutch ethnicity, and higher urbanization level were associated with higher acceptability of EAS whilst a religious life stance and good health were associated with lower acceptability. The percentage of physicians who considered performing EAS in people with psychiatric disorders conceivable ranged between 20% amongst medical specialists and 47% amongst general practitioners. Having received EAS requests from psychiatric patients before was associated with considering performing EAS conceivable. Being female, religious, medical specialist, or psychiatrist were associated with lower conceivability. The majority of the psychiatrists were of the opinion that it is possible to establish whether a psychiatric patient’s suffering is unbearable and without prospect and whether the request is well-considered. The general public shows more support than opposition as to whether patients suffering from a psychiatric disorder should be eligible for EAS, even though one third of the respondents remained neutral. Physicians’ support depends on their specialization; 39% of psychiatrists considered performing EAS in psychiatric patients conceivable. The relatively low conceivability is possibly explained by psychiatric patients often not meeting the eligibility criteria. (shrink)

Once upon a time, medicine dismissed narrative as unimportant and uninteresting. Then, in the late 1980s, physicians and scholars became interested in how the study of narrative could enhance our understanding of illness and health care, and the field that came to be known as “narrative medicine” developed. Some of this scholarly activity focused on the idea of narrative ethics.After a flurry of activity around the turn of the twenty‐first century, narrative ethics seemed to stall. The general interest in narrative (...) in medicine continued but with few new ideas on how one might use narrative toward ethical ends. In the last few years, however, forward momentum has returned. The timing seems appropriate, therefore, for a “state of the field” report of sorts. (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)

This paper responds to the commentaries from Stacy Carter and Alan Cribb. We pick up on two main themes in our response. First, we reflect on how the process of setting standards for empirical bioethics research entails drawing boundaries around what research counts as empirical bioethics research, and we discuss whether the standards agreed in the consensus process draw these boundaries correctly. Second, we expand on the discussion in the original paper of the role and significance of the concept of (...) ‘integrating’ empirical methods and ethical argument as a standard for research practice within empirical bioethics. (shrink)

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)

Despite the increased prevalence of bioethics research that seeks to use empirical data to answer normative research questions, there is no consensus as to what an appropriate methodology for this would be. This review aims to search the literature, present and critically discuss published Empirical Bioethics methodologies.