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  1.  88
    Two Decades of Research on Euthanasia from the Netherlands. What Have We Learnt and What Questions Remain?Judith Ac Rietjens,Paul J. van der Maas,Bregje D. Onwuteaka-Philipsen,Johannes Jm van Delden &Agnes van der Heide -2009 -Journal of Bioethical Inquiry 6 (3):271-283.
    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)
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  2.  80
    Can physicians conceive of performing euthanasia in case of psychiatric disease, dementia or being tired of living?Eva Elizabeth Bolt,Marianne C. Snijdewind,Dick L. Willems,Agnes van der Heide &Bregje D. Onwuteaka-Philipsen -2015 -Journal of Medical Ethics 41 (8):592-598.
  3.  110
    Reporting of euthanasia and physician-assisted suicide in the Netherlands: descriptive study.Hilde Buiting,Johannes van Delden,Bregje Onwuteaka-Philpsen,Judith Rietjens,Mette Rurup,Donald van Tol,Joseph Gevers,Paul van der Maas &Agnes van der Heide -2009 -BMC Medical Ethics 10 (1):18-.
    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)
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  4.  129
    Opinions about euthanasia and advanced dementia: a qualitative study among Dutch physicians and members of the general public.Pauline S. C. Kouwenhoven,Natasja J. H. Raijmakers,Johannes J. M. van Delden,Judith A. C. Rietjens,Donald G. Van Tol,Suzanne van de Vathorst,Nienke de Graeff,Heleen A. M. Weyers,Agnes van der Heide &Ghislaine J. M. W. van Thiel -2015 -BMC Medical Ethics 16 (1):7.
    The Dutch law states that a physician may perform euthanasia according to a written advance euthanasia directive when a patient is incompetent as long as all legal criteria of due care are met. This may also hold for patients with advanced dementia. We investigated the differing opinions of physicians and members of the general public on the acceptability of euthanasia in patients with advanced dementia.
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  5.  137
    News media coverage of euthanasia: a content analysis of Dutch national newspapers.Judith Ac Rietjens,Natasja Jh Raijmakers,Pauline Sc Kouwenhoven,Clive Seale,Ghislaine Jmw van Thiel,Margo Trappenburg,Johannes Jm van Delden &Agnes van der Heide -2013 -BMC Medical Ethics 14 (1):1-7.
    The Netherlands is one of the few countries where euthanasia is legal under strict conditions. This study investigates whether Dutch newspaper articles use the term ‘euthanasia’ according to the legal definition and determines what arguments for and against euthanasia they contain. We did an electronic search of seven Dutch national newspapers between January 2009 and May 2010 and conducted a content analysis. Of the 284 articles containing the term ‘euthanasia’, 24% referred to practices outside the scope of the law, mostly (...) relating to the forgoing of life-prolonging treatments and assistance in suicide by others than physicians. Of the articles with euthanasia as the main topic, 36% described euthanasia in the context of a terminally ill patient, 24% for older persons, 16% for persons with dementia, and 9% for persons with a psychiatric disorder. The most frequent arguments for euthanasia included the importance of self-determination and the fact that euthanasia contributes to a good death. The most frequent arguments opposing euthanasia were that suffering should instead be alleviated by better care, that providing euthanasia can be disturbing, and that society should protect the vulnerable. Of the newspaper articles, 24% uses the term ‘euthanasia’ for practices that are outside the scope of the euthanasia law. Typically, the more unusual cases are discussed. This might lead to misunderstandings between citizens and physicians. Despite the Dutch legalisation of euthanasia, the debate about its acceptability and boundaries is ongoing and both sides of the debate are clearly represented. (shrink)
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  6.  64
    Assistance in dying for older people without a serious medical condition who have a wish to die: a national cross-sectional survey.Natasja J. H. Raijmakers,Agnes van der Heide,Pauline S. C. Kouwenhoven,Ghislaine J. M. W. van Thiel,Johannes J. M. van Delden &Judith A. C. Rietjens -2015 -Journal of Medical Ethics 41 (2):145-150.
  7.  79
    Public and physicians’ support for euthanasia in people suffering from psychiatric disorders: a cross-sectional survey study.Kirsten Evenblij,H. Roeline W. Pasman,Agnes van der Heide,Johannes J. M. van Delden &Bregje D. Onwuteaka-Philipsen -2019 -BMC Medical Ethics 20 (1):1-10.
    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)
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  8.  75
    Forgoing Treatment at the End of Life in 6 European Countries.Georg Bosshard,Tore Nilstun,Johan Bilsen,Michael Norup,Guido Miccinesi,Johannes J. M. van Delden,Karin Faisst,Agnes van der Heide &for the European End-of-Life -2005 -JAMA Internal Medicine 165 (4):401-407.
    Modern medicine provides unprecedented opportunities in diagnostics and treatment. However, in some situations at the end of a patient’s life, many physicians refrain from using all possible measures to prolong life. We studied the incidence of different types of treatment withheld or withdrawn in 6 European countries and analyzed the main background characteristics.
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  9.  65
    Physicians’ views on the role of relatives in euthanasia and physician-assisted suicide decision-making: a mixed-methods study among physicians in the Netherlands.H. Roeline Pasman,Agnes van der Heide,Bregje D. Onwuteaka-Philipsen &Sophie C. Renckens -2024 -BMC Medical Ethics 25 (1):1-14.
    BackgroundRelatives have no formal position in the practice of euthanasia and physician-assisted suicide (EAS) according to Dutch legislation. However, research shows that physicians often involve relatives in EAS decision-making. It remains unclear why physicians do (not) want to involve relatives. Therefore, we examined how many physicians in the Netherlands involve relatives in EAS decision-making and explored reasons for (not) involving relatives and what involvement entails.MethodsIn a mixed-methods study, 746 physicians (33% response rate) completed a questionnaire, and 20 were interviewed. The (...) questionnaire included two statements on relatives’ involvement in EAS decision-making. Descriptive statistics were used, and multivariable logistic regression analyses to explore characteristics associated with involving relatives. In subsequent interviews, we explored physicians’ views on involving relatives in EAS decision-making. Interviews were thematically analysed.ResultsThe majority of physicians want to know relatives’ opinions about an EAS request (80%); a smaller group also takes these opinions into account in EAS decision-making (35%). Physicians who had ever received an explicit EAS request were more likely to want to know opinions and clinical specialists and elderly care physicians were more likely to take these opinions into account. In interviews, physicians mentioned several reasons for involving relatives: e.g. to give relatives space and help them in their acceptance, to tailor support, to be able to perform EAS in harmony, and to mediate in case of conflicting views. Furthermore, physicians explained that relatives’ opinions can influence the decision-making process but cannot be a decisive factor. If relatives oppose the EAS request, physicians find the process more difficult and try to mediate between patients and relatives by investigating relatives’ objections and providing appropriate information. Reasons for not taking relatives’ opinions into account include not wanting to undermine patient autonomy and protecting relatives from a potential burdensome decision.ConclusionsAlthough physicians know that relatives have no formal role, involving relatives in EAS decision-making is common practice in the Netherlands. Physicians consider this important as relatives need to continue with their lives and may need bereavement support. Additionally, physicians want to perform EAS in harmony with everyone involved. However, relatives’ opinions are not decisive. (shrink)
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  10.  52
    Old age and forgoing treatment: a nationwide mortality follow-back study in the Netherlands.Sandra Martins Pereira,H. Roeline Pasman,Agnes van der Heide,Johannes J. M. van Delden &Bregje D. Onwuteaka-Philipsen -2015 -Journal of Medical Ethics 41 (9):766-770.
  11. Two decades of research on euthanasia from the netherlands. What have we learnt and what questions remain?A. C. Rietjens Judith,J. Der Maas Pauvanl,D. Onwuteaka-Philipsen Bregje,J. M. Delden Johannevans &Agnes van der Heide -2009 -Journal of Bioethical Inquiry 6 (3).
    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)
     
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  12.  56
    Approaches to suffering at the end of life: the use of sedation in the USA and Netherlands: Table 1.Judith A. C. Rietjens,Jennifer R. Voorhees,Agnes van der Heide &Margaret A. Drickamer -2014 -Journal of Medical Ethics 40 (4):235-240.
    Background Studies describing physicians’ experiences with sedation at the end of life are indispensible for informed palliative care practice, but they are scarce. We describe the accounts of physicians from the USA and the Netherlands, two countries with different regulations on end-of-life decisions regarding their use of sedation.Methods Qualitative face-to-face interviews were held in 2007–2008 with 36 physicians , including primary care physicians and specialists. We applied purposive sampling and conducted constant comparative analyses.Results In both countries, the use of sedation (...) was described in diverse terms, especially in the USA, and was often experienced as emotionally challenging. Respondents stated different and sometimes multiple intentions for their use of sedation. Besides alleviating severe suffering, most Dutch respondents justified its use by stating that it does not hasten death, while most American respondents indicated that it might hasten death but that this was justifiable as long as that was not their primary intention. While many Dutch respondents indicated that they initiated open discussions about sedation proactively to inform patients about their options and to allow planning, the accounts of American respondents showed fewer and less-open discussions, mostly late in the dying process and with the patient's relatives.Conclusions The justification for sedation and the openness with which it is discussed were found to differ in the accounts of respondents from the USA and the Netherlands. Further clarification of practices and research into the effect and effectiveness of the use of sedation is recommended to enhance informed reflection and policy making. (shrink)
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  13.  48
    End-of-life decisions for children under 1 year of age in the Netherlands: decreased frequency of administration of drugs to deliberately hasten death.Katja ten Cate,Suzanne van de Vathorst,Bregje D. Onwuteaka-Philipsen &Agnes van der Heide -2015 -Journal of Medical Ethics 41 (10):795-798.
    Objective To assess whether the frequency of end-of-life decisions for children under 1 year of age in the Netherlands has changed since ultrasound examination around 20 weeks of gestation became routine in 2007 and after a legal provision for deliberately ending the life of a newborn was set up that same year. Methodology This was a recurrent nationwide cross-sectional study in the Netherlands. In 2010, a sample of death certificates from children under 1 year of age was derived from the (...) central death registry. All 223 deaths that occurred in a 4-month study period were included. Physicians who had reported a non-sudden death (n=206) were sent a questionnaire on the end-of-life decisions made. 160 questionnaires were returned (response 78%). Findings In 2010, 63% of all deaths of children under 1 year of age were preceded by an end-of-life decision—a percentage comparable to other times when this study was conducted (1995, 2001, 2005). These end-of-life decisions were mainly decisions to withdraw or withhold potentially life-sustaining treatment. In 2010, the percentage of cases in which drugs were administered with the explicit intention to hasten death was 1%, while in 1995 and 2001, this was 9% and in 2005, this was 8%. Discussion and conclusion There has been a reduction of infant deaths that followed administration of drugs with the explicit intention to hasten death. One explanation for this reduction relates to the introduction of routine ultrasound examination around 20 weeks of gestation. In addition, the introduction of legal criteria and a review process for deliberately ending the life of a newborn may have left Dutch physicians with less room to hasten death. (shrink)
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