Much of the public debate around the legalisation of assisted dying remains binary: yes or no. But this is a dangerous oversimplification. Assisted dying laws exist along a continuum, argue Katherine Sleeman and Iain Chalmers
The Australian state of Victoria has become the latest jurisdiction to legalise assisted dying, joining Belgium, Canada, Luxembourg, the Netherlands, and several US states. Although assisted dying remains illegal in the UK, there are signs that the country is inching towards legalisation. For example, in March 2019 the Royal College of Physicians adopted a position of neutrality, and the BMA and Royal College of General Practitioners have both decided to consult their members on whether their official positions should change from opposition.
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John looked at me quizzically. "I'd never really thought about it", he said, "But I think I'd like music during the procedure".
As a music therapist in Canada, I have been present at the bedside of many patients who have received assisted dying.
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All articles in May 2019's special issue of Bioethics offer profound insights into the issue of "being a burden to others" in relation to wishes to die, which are highly relevant for ethical debates about end-of-life care and physician-assisted dying. In this reply, we wish to stress the importance of acknowledging and analyzing the sociopolitical context of the phenomenon "being a burden" in relation to wishes to die and we will show how this analysis could benefit from a care ethical approach. As discussions in care ethics have made clear, caring practices are both social and political practices. An empirical and ethical analysis of "being a burden" therefore needs to take institutional and societal norms and structures into account, in addition to first-person experiences and concepts such as caring needs, relational autonomy, and interdependency. Besides the relevance of the sociopolitical context for the phenomenon "being a burden" as such, the sociopolitical context also seems relevant for the investigation of the phenomenon, which we will illustrate by reflecting on "being a burden" in relation to the practice of physician-assisted dying in the Netherlands.
Introduction: In 2013, the Vermont legislature passed Act 39: The Patient Choice and Control at End-of-Life Act, which legalized medical aid in dying (MAID) under specific circumstances for terminally ill Vermont residents. In the five years since the law was passed, 52 patients in Vermont have been prescribed medications to hasten death; however, important information regarding the experiences of the patient, caregiver, or physician involved in this process is lacking.
Objective: to survey the subspecialty physicians with the greatest contact with these patient populations, to better understand the physicians' attitudes and experiences with Act 39, and to gather more data about the utilization of Act 39 in Vermont.
Design: Physicians practicing Hematology/Oncology, Neurology, and/or Palliative Care at the University of Vermont Medical Group and affiliated hospitals in the state of Vermont were invited to participate. Participants were contacted via e-mail to complete blinded surveys, and responses were collected over several months in 2018.
Results: The attitudes and practices related to Act 39 were collected from 37 subspecialty physicians in Vermont. Seventy-one percent of the participants supported MAID via Act 39; however, many felt that they could use more information and resources to counsel a patient (51.4%) and complete the paperwork and prescription for life-ending medication (37.4%).
Conclusion: This is the first study to collect information regarding physicians' attitudes and experiences regarding Act 39 in Vermont. Most respondents supported Act 39, but there is a need and desire for more physician education and resources regarding patient counseling and paperwork.
OBJECTIVE: Euthanasia has been considered unethical for most of the history of medicine. Recently it has been legalised in some countries, including parts of Australasia. We describe the recent history of euthanasia, paying attention to the extension of criteria that impact on the poor, elderly and vulnerable members of society in countries that currently have legalised this. In four of the five countries where euthanasia is legalised, there have been extensions of its criteria, either by revision of legislation or changes in practice.
CONCLUSIONS: We suggest that this dynamic can be halted by international agreements of medical societies to shun involvement in euthanasia, as has been the case with other legal interventions that stigmatise. We may, as we have in the past, need to work collectively to meet this ethical challenge.
L’auteur propose de dépasser l’opposition si totale entre les pro et anti euthanasie. Son questionnement s’écarte volontairement du projet d’écriture d’une loi spécifique sur l’euthanasie, mais propose de donner suite à la brèche qu’avait ouverte la loi Claeys-Leonetti avec la sédation profonde et la suppression de l’obligation de réveil pour consentement. Il suggère ainsi d’étendre sous conditions strictes la sédation terminale à des cas d’euthanasie ou d’assistance au suicide. Au regard de l’extrême minorité des cas de patients atteints d’une maladie incurable mais dont le corps est loin d’être au bout de ses peines et qui demandent comme Anne Bert en son temps une aide médicale à mourir, Philippe Bataille plaide en faveur d’une évolution de la loi française dans le sens de la législation canadienne.
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Alors que le suicide est dépénalisé depuis plus de deux siècles dans nos pays, inciter une personne à se supprimer ou y contribuer activement est d'ordinaire puni par la loi et réprouvé par l'éthique. Démêler ce paradoxe et rendre plus intelligible un acte qui ne le sera peut-être jamais est le but de cet ouvrage. Qu'en ont dit les grands penseurs, des stoïciens jusqu'à saint Augustin, Thomas d'Aquin, Hume, Kant ou Emile Durkheim ? Et aujourd'hui, que peuvent nous apprendre le psychiatre et le travailleur social, le théologien et le médecin en soins palliatifs, ou encore l'économiste, qui lève ici le voile sur un tabou occidental ? Car le suicide d'une personne questionne les valeurs sur lesquelles reposent nos démocraties, comme la dignité humaine, la liberté ou la solidarité.
Un livre indispensable à toute discussion raisonnable sur l'euthanasie, l'aide au suicide et la prévention d'actes suicidaires.
OBJECTIVE: To describe the characteristics of persons with dementia receiving euthanasia/assisted suicide (EAS) and how the practice is regulated in the Netherlands.
DESIGNS: Qualitative directed content analysis of dementia EAS reports published by the Dutch euthanasia review committees between 2011 and October 5, 2018.
RESULTS: Seventy-five cases were reviewed: 59 concurrent requests and 16 advance requests. Fifty-three percent (40/75) were women, and 48% (36/75) had Alzheimer disease. Advance request EAS patients were younger, had dementia longer, and more frequently had personal experience with dementia. Some concurrent request EAS patients were quite impaired: 15% (9/59) were deemed incompetent by at least one physician; in 24% (14/59), patients' previous statements or current body language were used to assess competence. In 39% (29/75), patients' own physicians declined to perform EAS; in 43% (32/75), the physician performing EAS was new to them. Physicians disagreed about patients' eligibility in 21% (16/75). All advance request and 14 (25%) concurrent request patients had an advance euthanasia directive but the conditions of applicability often lacked specificity. In 5 of 16 advance request EAS and 2 of 56 concurrent request EAS cases, EAS procedure was modified (e.g., premedication). Twenty-five percent (4/16) of advance request cases did not meet legal due care criteria, in particular the "unbearable suffering" criterion.
CONCLUSIONS: Advance and concurrent request EAS cases differ in age, duration of illness, and past experience. Advance request EAS cases were complicated by ambiguous directives, patients being unaware of the EAS procedure, and physicians' difficulty assessing "unbearable suffering." Notably, some concurrent request patients were quite impaired yet deemed competent by appeals to previous statements.
BACKGROUND: Controversies arise over abortion, assisted dying and conscientious objection (CO) in healthcare. The purpose of the study was to examine the relationship between attitudes towards these bioethical dilemmas, and secularity and religiosity.
METHOD: Data were drawn from a 2017 web-based survey of a representative sample of 1615 Norwegian adults. Latent moderated structural equations modelling was used to develop a model of the relationship between attitudes.
RESULTS: The resulting model indicates that support for abortion rights is associated with pro-secular attitudes and is a main "driver" for support for assisted dying and opposition to conscientious objection.
CONCLUSIONS: This finding should be regarded as a hypothesis which ought to be tested in other populations. If the relationship is robust and reproduced elsewhere, there are important consequences for CO advocates who would then have an interest in disentangling the debate about CO from abortion; and for health systems who ought to consider carefully how a sound policy on CO can safeguard both patient trust in the services and the moral integrity of professionals. It is suggested that if religiosity wanes and pro-secular and pro-abortion attitudes become more widespread, support for CO might decline, putting into question whether present policies of toleration of conscientious refusals will remain acceptable to the majority.
In this article, I argue that a holistic strategy is needed to ascertain how implicit bias, on the part of health-care providers, and structural impediments work together to produce significant barriers to access to medical assistance in dying for marginalized groups—particularly those experiencing intersecting or interlocking forms of identity-based oppressions. In doing so, I also make the case that this kind of primary, patient-centered, and institutional research could benefit from the insights of critical feminism and materialist feminist theory by highlighting and challenging inequalities, opening up debate, and exploring new forms of knowledge production. It also offers a way to shape future research of medical assistance in dying, as it relates specifically to the study of how overlapping forms of structural and interpersonal marginalization (e.g., implicit bias), inclusive of race, gender, class, ethnicity, dis/ability, sexuality, and so on are expressed and experienced.
This paper recounts the author's conversations with Ryan Farnsworth, a 30-year-old ALS patient who consented to be interviewed for the purpose of improving communication between physicians and patients. Under the California End of Life Option (ELOA), the patient had been prescribed medication that would allow him to end his life at a time of his choosing. He describes coping with the challenges of the illness, how he will make the decision when to take the drugs and what he hopes will be his legacy.
All family practice residents need to know the basics about discussing end-of-life care with patients, their caregivers, and loved ones. This might entail imparting knowledge, skills, and attitudes with respect to medical assistance in dying (MAID). Medical assistance in dying became legal in 2016 (2015 in Quebec), and in the past year, about 1% of all deaths in Canada were assisted by clinicians. Different health authorities reported MAID rates of between 5% and 0.5%. As our laws and societies are similar to those of the Netherlands and Belgium, we can expect that within a few years, the rates of MAID across Canada will be 4% to 5%. This translates to 13 000 deaths annually. All family doctors must be prepared to answer questions from patients about MAID and give accurate information regardless of their personal feelings and values. Some will want to do assessments and some will also want to provide MAID for their patients. Most health authorities will have a program in place to mentor those practitioners who wish to provide MAID.
The Victorian Voluntary Assisted Dying Act 2017 (VAD Act), which commenced on 19 June 2019, permits voluntary assisted dying (VAD) in limited circumstances in Victoria. In addition to Victoria, the Western Australian government is currently developing its own VAD legislation, and Parliamentary committees have been established in Queensland and South Australia to consider reform. Although repeated attempts to reform the law have been generally unsuccessful, it now appears legislation may be more likely to pass.
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During recent years, arguments supporting and opposing the legalisation of assisted dying have greatly intensified. The issue is a matter for society to decide, but physicians and psychiatrists have an essential role in informing public and parliamentary opinion on the contributions and limitations of medical knowledge related to the assessment of patients who request assisted dying and the necessity for strict safeguards should it be legalised. Some of the more important aspects of assessment and safeguards are discussed in this paper.
BACKGROUND: Although euthanasia and assisted suicide (EAS) 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.
METHODS: A survey was distributed amongst a random sample of Dutch 2641 citizens (response 75%) and 3000 physicians (response 52%). Acceptance and conceivability of performing EAS, demographics, health status and professional characteristics were measured. Multivariable logistic regression analyses were performed.
RESULTS: 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 (> 65%) 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.
CONCLUSION: 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.
Quebec’s Superior Court has ruled in favour of two plaintiffs who were denied medical assistance in dying because their conditions did not imminently threaten to end their lives.
ssisted dying laws in both Canada and Quebec stipulate that only patients facing “reasonably foreseeable” death may access medical assistance in dying. But this requirement contravenes Canada’s charter of rights and freedoms, ruled Justice Christine Baudouin. She gave the federal and provincial governments six months to amend their laws before those provisions are suspended. Both governments said that they would study the ruling before deciding whether to appeal.
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This article is an analysis of the relationship between US hospice structure and the feeling of being a burden to others (FBO). A goal of US hospice care is to reduce the FBO. But in America, hospice is limited in its ability to do so because of the high caregiver burden it places on family members of dying people. Through a historical study, I show that this burden was excessive when the hospice system was created and has worsened over time. Through three ethnographic vignettes, I demonstrate how this burden inculcates in dying people the FBO. I then examine the bioethical implications of this finding for the existing US debate about physician-assisted suicide (PAS). The presence of FBO due to insufficient hospice care supports arguments made by PAS opponents about the social pressure placed on dying people. This finding is not itself sufficient to resolve the "right to die" debate. But it provides the ground for a compromise, across the debate, to reduce the FBO by changing US hospice structure. The resulting consensus will further the goals of both PAS proponents and opponents.
Death and dying are natural phenomena embedded within complex political, cultural and social systems. Nurses often practice at the forefront of this process and have a fundamental role in caring for both patients and those close to them during the process of dying and following death. While nursing has a rich tradition in advancing the palliative and end-of-life care movement, new modes of care for patients with serious and irremediable medical conditions arise when assisted death is legalized in a particular jurisdiction. In early 2015, the Supreme Court of Canada released its landmark decision Carter v. Canada (Attorney General) ('Carter'), which legalized physician-assisted suicide in particular clinical situations. The new law provided the broad national framework for Medical Assistance in Dying (MAiD) in Canada but, once the law was passed, provincial and territorial governments and health professional regulatory bodies each had to undertake a process of developing policies, procedures and processes to guide MAiD-related practice specific to their jurisdiction. In this paper, we begin to examine the political ramifications and professional tensions arising from MAiD for nurses and nursing, focusing specifically upon the impacts for registered nurses. We identify how variations in the provincial and territorial literature and regulatory guidelines across Canada have given rise to role confusion and uncertainty among some registered nurses and how this may potentially impact patient care. We then continue to highlight the need for greater political activism among nurses to foster greater clarity in nursing roles in MAiD and to advocate for improved supports for patients and those close to them.
On April 5, 2018, Governor David Ige signed the Hawai‘i Our Care, Our Choice Act. This legislation allows eligible terminally ill adults to request medical aid-in-dying (MAID). MAID is defined as “A safe and trusted medical practice in which a terminally ill, mentally capable adult with a prognosis of six months or less to live may request from his or her doctor a prescription for medication, which she or he can choose to self-administer to bring about a peaceful death.” MAID has also been referred to as physician-assisted suicide, or physician-assisted death. On January 1, 2019, Hawai‘i became the eighth US jurisdiction (preceded by California, Colorado, Montana, Oregon, Vermont, Washington state, and Washington, D.C) to implement the law authorizing MAID.
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BACKGROUND: Laws allowing assisted suicide and euthanasia have been implemented in many locations around the world but some individuals suffering with terminal illness receiving palliative care services are hastening death or die by suicide without assistance. This systematic review aims to summarise evidence of palliative care professionals' experiences of patients who died by suicide or hastened death in areas where assisted dying is legal and to understand when hastened death is considered to be a suicide.
METHODS: AMED, CINAHL Complete, PsycINFO, PubMED, and Academic Search Ultimate were searched for articles from inception through June 2018. Quality assessment used the Hawker framework.
RESULTS: A total of 1518 titles were screened resulting in thirty studies meeting eligibility criteria for this review. Published studies about professionals' experiences from areas with legalised assisted dying includes limited information about patients who hasten death outside legal guidelines, die by suicide without assistance, or if the law impacts suicide among palliative care patients.
CONCLUSION: There are a range of experiences and emotions professionals' experience with patients who die by euthanasia, assisted suicide, or hasten death without assistance. The included literature suggests improved communication among professionals is needed but does not explicitly identify when a hastened death is deemed a suicide in areas where assisted dying is practiced. More research is needed to help clarify what hastened death means in a palliative care context and identify how and if assisted dying impacts issues of suicide in palliative care settings.