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)

Objective—Consultation of another physician is an important method of review of the practice of euthanasia. For the project “support and consultation in euthanasia in Amsterdam” which is aimed at professionalising consultation, a protocol for consultation was developed to support the general practitioners who were going to work as consultants and to ensure uniformity. Participants—Ten experts (including general practitioners who were experienced in euthanasia and consultation, a psychiatrist, a social geriatrician, a professor in health law and a public prosecutor) and the (...) general practitioners who were going to use the protocol. Evidence—There is limited literature on consultation: discursive articles and empirical studies describing the practice of euthanasia. Consensus—An initial draft on the basis of the literature was commented on by the experts and general practitioners in two rounds. Finally, the protocol was amended after it had been used during the training of consultants. Conclusions—The protocol differentiates between steps that are necessary in a consultation and steps that are recommended. Guidelines about four important aspects of consultation were given: independence, expertise, tasks and judgment of the consultant. In 97% of 109 consultations in which the protocol was used the consultant considered the protocol to be useful to a greater or lesser extent. Although this protocol was developed locally, it also employs universal principles. Therefore it can be of use in the development of consultation elsewhere. (shrink)

BackgroundHuntington’s disease has a poor prognosis. For HD patients in the Netherlands, one way of dealing with their poor prognosis is by drawing up an advance euthanasia directive. Little is known about the perspectives of HD patients on their AED.AimTo gain insight into patients’ views on and attitudes towards their AED, and changes over time.MethodsA longitudinal qualitative interview study using 1 to 6 semi-structured interviews over a period of maximum three years. Nine HD patients who either had an AED or (...) were thinking about drawing it up participated in this study.ResultsWe identified two themes that characterize patients’ perspectives on their AEDs: general character of the AED; uncertainty around their AED. Ad The conditions that the participants described in their AED were generally not very specific for the person. Mostly they were general notions of unbearable suffering. Familiarity with HD in the family could play a role in drawing up an AED. Ad Participants generally were aware of the tentative character of their AED and could have doubts concerning their own willingness or the willingness of others in the future. Sometimes these doubts were so great, that it prevented them from drawing up an AED. However, patients did not alter their AED during the follow-up period or changed in their view or attitude on their AED.ConclusionHD patients that draw up an AED usually describe general conditions for euthanasia and recognize that these conditions may change as the disease progresses. An AED or the wish to draw one up may be a good conversation starter for conversations about goals and preferences for future care. (shrink)

BackgroundLiterature shows that middle-aged and older adults sometimes experience a wish to die. Reasons for these wishes may be complex and involve multiple factors. One important question is to what extent people with a wish to die have medically classifiable conditions. Aim Estimate the prevalence of a current wish to die among middle-aged and older adults in The Netherlands; explore which factors within domains of vulnerability are associated with a current wish to die; assess how many middle-aged and older adults (...) with a current wish to die do not have a medically classifiable condition and/or an accumulation of age-related health problems.MethodsData of 2015/16 from the Longitudinal Aging Study Amsterdam were used for this cross-sectional study, obtained through structured medical interviews and self-reported questionnaires. Three experienced physicians assessed whether the participants with a current wish to die could be classified as having a medically classifiable condition and/or an accumulation of age-related health problems.ResultsN = 62 participants had a current wish to die. Having a current wish to die was associated with multiple characteristics across four domains of vulnerability, among which: self-perceived health, problems with memory, self-perceived quality of life and meaningfulness of life. Fifty-four participants with a current wish to die were assessed with having a medically classifiable condition, of which one was also assessed with having an accumulation of age-related health problems. Six people were assessed to have neither, and for two people it was unclear.ConclusionA small minority of middle-aged and older adults in the Netherlands have a current wish to die. Most of them can be classified with a medical condition and one person with an accumulation of age-related health problems. Furthermore, the findings show that having a current wish to die is multi-faceted. There is still a need for more knowledge, such as insight in to what extent suffering stemming from the medical classifiable disease contributes to the development of the wish to die. (shrink)

In the Netherlands, in 1995 approximately 9700 people explicitly requested euthanasia or assisted suicide, and EAS was performed approximately 3600 times. The most important reasons for not performing EAS when requested by a patient were that the patient died before EAS was performed, or that the physician refused the request.

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)

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. (shrink)

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. (shrink)

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. (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)

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)

Introduction With an ageing population, end-of-life care is increasing in importance. The present work investigated characteristics and time trends of older peoples' attitudes towards euthanasia and an end-of-life pill. Methods Three samples aged 64 years or older from the Longitudinal Ageing Study Amsterdam (N=1284 (2001), N=1303 (2005) and N=1245 (2008)) were studied. Respondents were asked whether they could imagine requesting their physician to end their life (euthanasia), or imagine asking for a pill to end their life if they became tired (...) of living in the absence of a severe disease (end-of-life pill). Using logistic multivariable techniques, changes of attitudes over time and their association with demographic and health characteristics were assessed. Results The proportion of respondents with a positive attitude somewhat increased over time, but significantly only among the 64–74 age group. For euthanasia, these percentages were 58% (2001), 64% (2005) and 70% (2008) (OR of most recent versus earliest period (95% CI): 1.30 (1.17 to 1.44)). For an end-of-life pill, these percentages were 31% (2001), 33% (2005) and 45% (2008) (OR (95% CI): 1.37 (1.23 to 1.52)). For the end-of-life pill, interaction between the most recent time period and age group was significant. Conclusions An increasing proportion of older people reported that they could imagine desiring euthanasia or an end-of-life pill. This may imply an increased interest in deciding about your own life and stresses the importance to take older peoples' wishes seriously. (shrink)

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. (shrink)

BackgroundIn the Netherlands, Foundation De Einder offers counselling to people who wish to be able to self-determine the timing and manner of their end of life.AimThis study explores the experiences with counselling that counselees receive from counsellors facilitated by Foundation De Einder.MethodsOpen coding and inductive analysis of in-depth interviews with 17 counselees.ResultsCounselling ranged from solely receiving information about lethal medication to combining this with psychological counselling about matters of life and death, and the effects for close ones. Counselees appreciated the (...) availability of the counsellor, their careful and open attitude, feeling respected and being reminded about their own responsibility. Some counselees felt dependent on the counsellor, or questioned their competency. Most counselees collected lethal medication. This gave them peace of mind and increased their quality of life, but also led to new concerns. Few were inclined to use their self-collected medication. Counselling contributed to thinking about if, when and how counselees would like to end their life.ConclusionHaving obtained means to end their lives can offer people feelings of reassurance, which can increase their quality of life, but can also give rise to new concerns. Next to providing information on lethal medication, counsellors can play an important role by having an open non-judgemental attitude, providing trustworthy information and being available. These positively valued aspects of counselling are also relevant for physicians taking care of patients who wish to self-determine the timing and manner of their end of life. (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)

To describe the content of practice guidelines on euthanasia and assisted suicide (EAS) and to compare differences between settings and guidelines developed before or after enactment of the euthanasia law in 2002 by means of a content analysis. Most guidelines stated that the attending physician is responsible for the decision to grant or refuse an EAS request. Due care criteria were described in the majority of guidelines, but aspects relevant for assessing these criteria were not always described. Half of the (...) guidelines described the role of the nurse in the performance of euthanasia. Compared with hospital guidelines, nursing home guidelines were more often stricter than the law in excluding patients with dementia (30% vs 4%) and incompetent patients (25% vs 4%). As from 2002, the guidelines were less strict in categorically excluding patients groups (32% vs 64%) and in particular incompetent patients (10% vs 29%). Healthcare institutions should accurately state the boundaries of the law, also when they prefer to set stricter boundaries for their own institution. Only then can guidelines provide adequate support for physicians and nurses in the difficult EAS decision-making process. (shrink)

Aim: To examine how physicians’ life stances affect their attitudes to end-of-life decisions and their actual end-of-life decision-making.Methods: Practising physicians from various specialties involved in the care of dying patients in Belgium, Denmark, The Netherlands, Sweden, Switzerland and Australia received structured questionnaires on end-of-life care, which included questions about their life stance. Response rates ranged from 53% in Australia to 68% in Denmark. General attitudes, intended behaviour with respect to two hypothetical patients, and actual behaviour were compared between all large (...) life-stance groups in each country.Results: Only small differences in life stance were found in all countries in general attitudes and intended and actual behaviour with regard to various end-of-life decisions. However, with regard to the administration of drugs explicitly intended to hasten the patient’s death , physicians with specific religious affiliations had significantly less accepting attitudes, and less willingness to perform it, than non-religious physicians. They had also actually performed PAD less often. However, in most countries, both Catholics and Protestants reported ever having made such a decision.Discussion: The results suggest that religious teachings influence to some extent end-of-life decision-making, but are certainly not blankly accepted by physicians, especially when dealing with real patients and circumstances. Physicians seem to embrace religious belief in a non-imperative way, allowing adaptation to particular situations. (shrink)

Introduction: The Dutch Euthanasia Act states that euthanasia is not punishable if the attending physician acts in accordance with the statutory due care criteria. These criteria hold that: there should be a voluntary and well-considered request, the patient’s suffering should be unbearable and hopeless, the patient should be informed about their situation, there are no reasonable alternatives, an independent physician should be consulted, and the method should be medically and technically appropriate. This study investigates whether physicians experience problems with these (...) criteria in medical practice.Methods: In 2006, questionnaires were sent to a random, stratified sample of 2100 Dutch physicians . Physicians were asked about problems in their decision-making related to requests for euthanasia or assisted suicide after enforcement of the 2002 Euthanasia Act.Results: Of all physicians who had received a request for euthanasia or assisted suicide , 25% had experienced problems in the decision-making with regard to at least one of the criteria of due care. Physicians who had experienced problems mostly indicated to have had problems related to evaluating whether or not the patient’s suffering was unbearable and hopeless and whether or not the patient’s request was voluntary or well considered .Discussion: Physicians in The Netherlands most frequently reported problems related to aspects in which they have to evaluate the patient’s subjective perspective. However, it can be questioned whether placing emphasis on these subjective aspects is an adequate fulfilment of the duties imposed on physicians, as laid down in the Dutch Euthanasia Act. (shrink)

Introduction In 2007, a national review committee was instituted in The Netherlands to review cases of active ending of life for newborns. It was expected that 15–20 cases would be reported. To date, however, only one case has been reported to this committee. Reporting is essential to obtain societal control and transparency; the possible explanations for this lack of reporting were therefore explored. Methods Data on end-of-life decision-making were scrutinised from Dutch nation-wide studies (1995, 2001 and 2005), before institution of (...) the committee. Physicians received a questionnaire about their medical decision-making for stratified samples of deceased infants up to 1 year, drawn from the central death registry. Results In 2005, 58% of all deaths were preceded by an end-of-life decision, compared with 68% in 2001 and 62% in 1995. The use of drugs with a possible life-shortening effect tended to be lower. In 2005, all four cases in the study in which an infants' life was actively ended were preceded by a decision to forego life-prolonging treatment. In three cases, the infant's life expectancy was short; one case involved a longer life expectancy. Discussion The expected number of cases is probably an overestimation due to changes in medical practice such as the tendency to attribute less life-shortening effects to opioids. The lack of reports is probably also associated with requirements in the regulation; it may be difficult to fulfil them due either to time constraints or the nature of the suffering that is addressed. If societal control of active ending of life is considered useful, changes in the regulation may be needed. (shrink)

In recent years, social scientists have turned their critical lens on the historical roots and contours of their disciplines, including their politics and practices, epistemologies and methods, institutionalization and professionalization, national development and colonial expansion, globalization and local contestations, and their public presence and role in society. The Social Sciences in the Looking Glass offers current social scientific perspectives on this reflexive moment in the social sciences. Examining sociology, anthropology, philosophy, political science, legal theory, and religious studies, the volume's contributors (...) outline the present transformations of the social sciences, explore their connections with critical humanities, analyze the challenges of alternate paradigms, and interrogate recent endeavors to move beyond the human. Throughout, the authors, who belong to half a dozen disciplines, trace how the social sciences are thoroughly entangled in the social facts they analyze, and are key to helping us understand the conditions of our world. Contributors. Chitralekha, Jean-Louis Fabiani, Didier Fassin, Johan Heilbron, Miriam Kingsberg Kadia, Kristoffer Kropp, Nicolas Langlitz, John Lardas Modern, Álvaro Morcillo Laiz, Amín Pérez, Carel Smith, George Steinmetz, Peter D. Thomas, Bregje van Eekelen, Agata Zysiak. (shrink)