Background: In June 2016, when the Parliament of Canada passed Bill C-14, the country joined the small number of jurisdictions that have legalized medical assistance in dying (maid). Since legalization, nearly 7000 Canadians have received maid, most of whom (65%) had an underlying diagnosis of cancer. Although Bill C-14 specifies the need for government oversight and monitoring of maid, the government-collected data to date have tracked patient characteristics, rather than clinician encounters and beliefs. We aimed to understand the views of Canadian oncologists 2 years after the legalization of maid.
Methods: We developed and administered an online survey to medical and radiation oncologists to understand their exposure to maid, self-perceived knowledge, willingness to participate, and perception of the role of oncologists in introducing maid as an end-of-life care option. We used complete sampling through the Canadian Association of Medical Oncologists and the Canadian Association of Radiation Oncology membership e-mail lists. The survey was sent to 691 physicians: 366 radiation oncologists and 325 medical oncologists. Data were collected during March-June 2018. Results are presented using descriptive statistics and univariate or multivariate analysis.
Results: The survey attracted 224 responses (response rate: 32.4%). Of the responding oncologists, 70% have been approached by patients requesting maid. Oncologists were of mixed confidence in their knowledge of the eligibility criteria. Oncologists were most willing to engage in maid with an assessment for eligibility, and yet most refer to specialized teams for assessments. In terms of introducing maid as an end-of-life option, slightly more than half the responding physicians (52.8%) would initiate a conversation about maid with a patient under certain circumstances, most commonly the absence of viable therapeutic options, coupled with unmanageable patient distress.
Conclusions: In this first national survey of Canadian oncologists about maid, we found that most respondents encounter patient requests for maid, are confident in their knowledge about eligibility, and are willing to act as assessors of eligibility. Many oncologists believe that, under some circumstances, it is appropriate to present maid as a therapeutic option at the end of life. That finding warrants further deliberation by national or regional bodies for the development of consensus guidelines to ensure equitable access to maid for patients who wish to pursue it.
The Australian state of Victoria legalised voluntary assisted dying (VAD) in June 2019. Like most jurisdictions with legalised VAD, the Victorian law constructs physicians as the only legal providers of VAD. Physicians with conscientious objection to VAD are not compelled to participate in the practice, requiring colleagues who are willing to participate to transact the process for eligible applicants. Physicians who provide VAD because of their active, moral and purposeful support for the law are known as conscientious participants. Conscientious participation has received scant attention in the bioethics literature. Patient access to VAD is contingent on the development of a sufficient corpus of conscientious participants in permissive jurisdictions. This article reports the findings of a small empirical study into how some Victorian physicians with no in-principle opposition towards the legalisation of VAD, are ethically orientating themselves towards the law, in the first 8 months of the law's operation. It finds that in-principle-supportive physicians employ bioethical principles to justify their position but struggle to reconcile that approach with the broader medical profession's opposition. This study is part of the first tranche of empirical research emerging from Australia since the legalisation of VAD in that country for the first time in over 20 years.
BACKGROUND: Regulations on forgoing life-sustaining treatment (LST) have developed in Asian countries including Japan, Korea and Taiwan. However, other countries are relatively unaware of these due to the language barrier. This article aims to describe and compare the relevant regulatory frameworks, using the (more familiar) situation in England as a point of reference. We undertook literature reviews to ascertain the legal and regulatory positions on forgoing LST in Japan, Korea, Taiwan, and England.
MAIN TEXT: Findings from a literature review are first presented to describe the development of the regulatory frameworks surrounding the option of forgoing LST in each country. Based on the findings from the four countries, we suggest five ethically important points, reflection on which should help to inform the further development of regulatory frameworks concerning end-of-life care in these countries and beyond. There should be reflection on: (1) the definition of - and reasons for defining - the 'terminal stage' and associated criteria for making such judgements; Korea and Taiwan limit forgoing LST to patients in this stage, but there are risks associated with defining this too narrowly or broadly; (2) foregoing LST for patients who are not in this stage, as is allowed in Japan and England, because here too there are areas of controversy, including (in England) whether the law in this area does enough to respect the autonomy of (now) incapacitated patients; (3) whether 'foregoing' LST should encompass withholding and withdrawing treatment; this is also an ethically disputed area, particularly in the Asian countries we examine; (4) the family's role in end-of-life decision-making, particularly as, compared with England, the three Asian countries traditionally place a greater emphasis on families and communities than on individuals; and (5) decision-making with and for those incapacitated patients who lack families, surrogate decision-makers or ADs.
CONCLUSION: Comparison of, and reflection on, the different legal positions that obtain in Japan, Korea, Taiwan, and England should prove informative and we particularly invite reflection on five areas, in the hope the ensuing discussions will help to establish better end-of-life regulatory frameworks in these countries and elsewhere.
This article considers a particular aspect of palliative psychology that is inherent to the needs in the area of attitudes concerning Advance Healthcare Directives (AHDs) among Italian physicians and nurses after the promulgation of Law No. 219/2017 on AHDs and informed consent in 2018. The study utilized a mixed-method approach. The group of participants was composed of 102 healthcare professionals (63 females and 39 males). The quantitative part utilized the following scales: Attitudes toward Euthanasia, the Religious Orientation Scale, the Balanced Inventory of Desirable Responding, and the Testoni Death Representation Scale. The results were mostly in line with the current literature, especially concerning a positive correlation between religiosity and the participants' rejection of the idea of euthanasia. However, the qualitative results showed both positive and negative attitudes towards AHDs, with four main thematic areas: "Positive aspects of the new law and of AHDs", "Negative aspects of the new law and of AHDs", "Changes that occurred in the professional context and critical incidents", and "Attitudes towards euthanasia requests." It emerged that there is not any polarization between Catholics or religious people and secularists: Their positions are substantially similar with respect to all aspects, including with regard to euthanasia. The general result is that the law is not sufficiently understood, and so a quarter of the participants associate AHDs with euthanasia. Discussions on the opportunity for palliative psychologists to help health professionals to better manage these issues through death education courses are presented.
Background: Public policy has been a foundational component of the World Health Organization public health model for palliative care development since 1990. There is, however, limited evidence on the existence and character of palliative care policy at the country level.
Objective: To identify, report on, and map the presence of national palliative care strategies, plans, legislation, and dedicated government resources in 198 countries.
Design: An online survey generated 2017 data on indicators of national policy for palliative care.
Subjects: In-country experts on palliative care.
Measurements: The survey included specific questions on the existence and status of national strategies or plans, recognition of palliative care in national law, and dedicated government support.
Results: Fifty-five countries have a national strategy or plan for palliative care of some sort, though levels of implementation vary. Forty-seven countries have some reference to palliative care in national law, and 24 have some form of stand-alone national law on palliative care provision or recognize it as a right in the constitution. Sixty-six countries have a dedicated section within government with responsibility for palliative care.
Conclusions: There is a long way to go before palliative care around the world is universally supported by public policy intentions that will support its required development.
Assisted dying practices, which include euthanasia and physician-assisted suicide (PAS), have expanded significantly around the world over the past 20 years. Euthanasia refers to the act of intentionally ending the life of a patient by a health care practitioner through medical means at that patient's explicit request while PAS involves the provision or prescribing of drugs by a health care practitioner for a patient to end their own life. The growing global aging population accompanied by higher levels of chronic disease and protracted illnesses have sharpened the focus on end of life issues and societal and legislative debates continue to address related moral and ethical complexities. Assisted dying practices are now legal in 18 jurisdictions, increasing the number of people with access to euthanasia and/or physician-assisted suicide (PAS) to over 200 million. New legislation is being crafted or considered in Portugal, Spain and 16 US states. Germany has recently overturned a ban on assisted dying services and New Zealand will put legalization of euthanasia to a vote in 2020. Assisted dying practice characteristics differ and there is also considerable variation in the terminology and labels used for assisted dying, which can add to the confusion and controversy around the practices. Frequency of use also varies greatly by jurisdiction, though a consistent increase has been seen in European countries including Belgium, the Netherlands and Switzerland as well as some jurisdictions with long-standing physician assisted dying laws, such as Oregon and Washington. All assisted dying legislation includes substantive and procedural requirements, such as minimum age, waiting period, health condition, physician consultation and reporting procedure, however, some are extensive and detailed while others are more limited. As access to assisted dying expands in new and existing jurisdictions, research must also expand to diligently examine the impact on patients, specifically among vulnerable populations, as well as on health care practitioners, health care systems and communities. This article will provide a thorough investigation, or 'status quaestionis' of the terminology, evolution and current legislative picture of assisted dying practices around the globe and contribute to the ongoing ethical, regulatory and practice debate, which have become increasingly important considerations for medical practice, end-of-life care and public health.
The purpose of this article is to report some Victorian doctors' general perspectives and knowledge of the new Voluntary Assisted Dying Act 2017 (Vic) (VAD Act). Under the VAD Act, doctors are constructed as the only legal providers of VAD in Victoria. Doctors who are unwilling to participate in VAD therefore constitute a barrier to patient access. This article reports the findings of a small empirical study into how some Victorian doctors with no in-principle objection towards the legalisation of VAD, are orientating themselves towards the law. It also explores participants' understanding of the specific role required of doctors under the law. It finds that participants equate their support for the Act with biomedical ethical principles and generally hold a level of knowledge of the law which is not comprehensive but improves with greater exposure to VAD applications. This study serves as a temperature check of this key stakeholder group's perspectives on the VAD Act in the first eight months of its operation.
This column discusses the potential for conflict between the Federal laws forbidding the use of telecommunications to spread "suicide-related materials" and the laws in Victoria and Western Australia which have legalised forms of voluntary assisted dying. The column argues that the effect of the State laws is to differentiate the legal forms of voluntary assisted dying from suicide and assisted suicide, with the effect that Federal prohibitions do not apply to telecommunications between health practitioners and their patients regarding voluntary assisted dying.
In 2017, Victoria became the first state in Australia to pass legislation permitting voluntary assisted dying. Under this law, only those people who are near the end of their lives may access voluntary assisted dying, and because many of these people require nursing care to manage the progression of their illness or their symptoms, it will invariably have an impact on nursing practice. The Victorian law includes a series of procedural steps as safeguards to ensure that the law operates as intended. To support people who choose voluntary assisted dying and to practice safely within boundaries of the law, nurses must be aware of these requirements and how they operate. However, there are often gaps in nurses' legal knowledge. This was demonstrated in an article that aimed to inform nurses about the operation of Voluntary Assisted Dying Act 2017 (Vic) but contained several errors and misstatements of the law. Our article corrects these errors and discusses how the law is intended to be applied by revisiting the fictional case of Chloe - a woman with a terminal illness who is seeking voluntary assisted dying. As the Voluntary Assisted Dying Act 2017 (Vic) also protects nurses from liability if they act in accordance with its provisions, we conclude that sound knowledge and understanding of its operation support nurses to provide the safe, comprehensive and compassionate care their patients deserve at the end of life.
In November of 2019, New Zealand's Parliament enacted the End of Life Choice Act 2019 (NZ) to authorise the administration of a lethal dose of medication to competent adults suffering from a terminal illness likely to end his or her life within six months, should they directly and voluntarily request it. However, before this legislation can enter into force, it must be approved by a majority of voters at a referendum held at the next general election. This article traces how the End of Life Choice Act 2019 came to be enacted and examines the existing data on public opinion in order to provide a cautious prediction as to that referendum vote's likely result.
BACKGROUND: Interest in the topic of termination of life has been growing for 2 decades. After legalisation of active euthanasia and assisted suicide (EAS) in the Netherlands in 2002, movements to implement similar laws started in other European countries. However, many people objected to legalisation on the basis of the experiences in the Netherlands and as a matter of principal.
METHODS: This selected and focussed review presents the theoretical discussions about EAS and describes the respective parliamentary discussions in Germany and the data and experiences in the Netherlands. It also considers people with mental disorders in the context of termination-of-life services.
RESULTS: So far, only a few European countries have introduced legislation on EAS. Legalisation of EAS in the Netherlands resulted in an unexpectedly large increase in cases. The number of people with mental disorders who terminate their lives on request remains low.
CONCLUSIONS: Experience from the Netherlands shows that widening criteria for EAS has problematic consequences. KEY POINTS Termination of life on request, which a subgroup of people support, is a matter of ongoing debate. Because of several problematic aspects, including ethical considerations, only a few countries in the world allow active euthanasia or assisted suicide. Even if euthanasia is well regulated, legalising it can have problematic consequences that are difficult to control, such as an unwanted excessive increase in euthanasia cases. The well-documented experiences with the euthanasia law in the Netherlands serve as an example of what is to be expected when euthanasia is legalised. We need to pay close attention to the relationship between suicide and suicide prevention on the one hand and euthanasia acts and promotion of euthanasia on the other. Further ethical, psychological and legal research is needed. In particular, the role of palliative medicine in societies' approach to end-of-life care must be explored in much more detail.
The number of countries and states that have legalized assistance in dying under various names (Medical Assistance in Dying, Death with Dignity, etc.) has continued to grow in recent years, allowing this option for more patients. Most of these laws include restrictions for eligibility based on a terminal diagnosis and estimated prognosis, as well as asking certifying providers to attest to the cognitive and psychiatric competence and capacity of patients requesting access. Some laws also require that patients must be able to 'self-administer' the regimen, though details vary. Such determinations can be vague and difficult to clearly apply to patients with neurologic conditions and primary or metastatic brain tumors. There is currently a lack of rigorous studies guiding providers on how to apply these important legal criteria to this special and common patient population. As access to legal assistance in dying expands, more research is needed on how to ethically apply the laws and guide patients, families and providers through the process.
La loi Claeys–Leonetti a donné le droit à « une sédation profonde et continue provoquant une altération de la conscience maintenue jusqu’au décès (SPCMD) ». Chaque situation de sa mise en œuvre soulève des questions éthiques, morales, mais aussi pratiques, techniques et organisationnelles. Comment s’approprier la SPCMD dans le contexte particulier de la réanimation ? Comment définir les contours de cette pratique sédative à visée palliative ? Quelles sont les modalités décisionnelles et pratiques de sa mise en œuvre ? La SPCMD se distingue des autres pratiques sédatives à visée palliative : elle consiste à rendre le patient inconscient sans communication possible ; son intention dès l’initiation est d’être poursuivie jusqu’au décès, l’inconscience provoquée est quant à elle l’objectif, et non pas l’effet indésirable. La SPCMD se distingue également de l’euthanasie : si la distinction peut parfois paraître complexe et ambiguë lorsqu’elle s’accompagne en réanimation de l’arrêt d’un traitement de maintien en vie, les intentions restent radicalement différentes. Si les modalités décisionnelles sont clairement précisées dans la loi, les étapes du processus décisionnel continuent de questionner les équipes de réanimation. Et les modalités d’application pratique sont moins claires, particulièrement dans le contexte de la réanimation. Si la loi actuelle est probablement insuffisamment connue et mise en œuvre, elle permet de soigner les patients en fin de vie, tout en respectant leur dignité.
La Loi Claeys-Leonetti du 2 février 2016 a institué un droit d'accès à la sédation profonde et continue jusqu'au décès (SPCJD) sous certaines conditions. En France, peu de données existent pour évaluer comment ce droit très récent s'installe sur le terrain. Le Centre national des soins palliatifs et de la fin de vie (CNSPFV), dont les missions sont notamment la collecte de données sur les conditions de la fin de vie en France et le suivi des politiques publiques sur le sujet a mené une première enquête quantitative nationale rétrospective début 2018. Son objectif principal était d'apprécier combien de SPCJD avaient été demandées et/ou proposées globalement en France en 2017, soit la première année pleine d'exercice possible de la loi, ses décrets d'application ayant été promulgués en août 2016. Cette première enquête avait également pour objectif d'accompagner cette nouvelle disposition législative pour mieux la faire connaître sur le terrain. C'est pourquoi il avait été choisi de la mener le plus largement possible, auprès à la fois des hôpitaux, des HAD, des EHPAD et des médecins généralistes, ce qui a pu être fait grâce au soutien de l'Ordre des médecins.
Cette première enquête n'avait pas permis d'obtenir de données quantitatives fiables. Le taux de réponse avait été trop faible, les structures interrogées ayant du mal à se mobiliser. Elles avaient invoqué des biais de mémoire et des difficultés d'identification des sédations profondes et continue jusqu'au décès au sein des pratiques sédatives de fin de vie en général, particulièrement à l'hôpital. Pour autant, elle avait été très instructive au plan qualitatif, montrant par exemple que cette pratique dépasse largement le champ des soins palliatifs. Elle avait aussi mis en lumière le fait que le terme de « sédation profonde et continue jusqu'au décès » renvoie à des pratiques différentes d'une spécialité médicale à une autre, comme c'est le cas dans d'autres pays et qu'il convient si l'on veut se faire une idée plus précise de ce qui se passe réellement sur le terrain de se mettre d'accord au préalable sur ce que recouvrent les données que l'on recueille. Cette première édition a conduit le CNSPFV à modifier sa méthode en 2019. Nous avons choisi de nous concentrer sur un plus petit échantillon de structures, de cibler une période de recueil plus courte pour éviter les biais de mémoire (1 semaine donnée), de recourir à des enquêteurs locaux, travaillant au sein des sites de l'enquête et surtout de travailler en amont avec eux pour élaborer ensemble une grille de caractérisation commune des SPCJD que nous souhaitions identifier au sein des pratiques sédatives de fin de vie. Cette enquête s'est focalisée sur quelques établissements hospitaliers, lieux de décès le plus fréquent en France. En effet selon les données de l'INSEE de 2017, les décès surviennent à l'hôpital dans 54% des cas, à domicile dans 24%, en EHPAD dans 13% des cas, sur la voie et lieu public dans
1% des cas et autre pour 8% des cas.
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Introduction: Advance directives are legal documents which individuals draw up to declare their treatment preferences and to appoint well-informed proxies to safeguard patient autonomy in critical situations when that individual is temporarily or no longer able to communicate these preferences. On December 22, 2017, the Italian Parliament approved the first law on end of life (“Provisions for informed consent and advance directives” L.219/2017), after a heated public and political debate lasting almost twenty years.
Objective: The aim of this study was to investigate the awareness, knowledge, opinions and attitudes regarding Italian Law 219/2017 and advance directives among the Italian population 15 months after its entry into force.
Methods: A nationwide population-based survey was conducted by a certified public opinion survey company. A sample size of 2000 interviews was planned. A structured questionnaire was developed to investigate awareness, opinions and attitudes concerning the law by a multiprofessional research team. The agreed-on version was pretested on a sample of 70 selected participants.
Results: The sample included 2000 valid interviews; 70.1% of respondents declared they had heard about the law on informed consent and advance directives. Respondents were asked to express their overall opinion on the law’s utility and importance: 88% declared that the law was quite or very important and 76% had a positive attitude towards making/registering advance directives.
Conclusion: The principles of Italian Law 219/2017 are aligned with the ethical sentiment of the vast majority of the Italian population. It is crucial to stimulate discussion to increase knowledge and awareness in order to increase the number of advance directives.
Background: Voluntary assisted dying (VAD) became legal in the Australian state of Victoria on 19 June 2019 and will be legal in Western Australia from 2021. Other Australian states are progressing similar law reform processes. In Australia and internationally, doctors are central to the operation of all legal VAD regimes. It is broadly accepted that doctors, as a profession, are less in favour of VAD law reform than the rest of the community. To date, there has been little analysis of the factors that motivate doctors’ support or opposition to legalised VAD in Australia.
Aim: To review all studies reporting the attitudes of Australian doctors regarding the legalisation of VAD, including their willingness to participate in it, and to observe and record common themes in existing attitudinal data.
Design: Scoping review and thematic analysis of qualitative and quantitative data.
Data sources: CINAHL, Embase, Scopus, PubMed and Informit were searched from inception to June 2019.
Results: 26 publications detailing 19 studies were identified. Thematic analysis of quantitative and qualitative findings was performed. Three overarching themes emerged. ‘Attitudes towards regulation’ encompassed doctors’ orientation towards legalisation, the shortcomings of binary categories of support or opposition and doctors’ concerns about additional regulation of their professional practices. ‘Professional and personal impact of legalisation’ described tensions between palliative care and VAD, and the emotional and social impact of being providers of VAD. ‘Practical considerations regarding access’ considered doctors’ concerns about eligibility criteria and their willingness to provide VAD.
Conclusion: A detailed understanding of medical perspectives about VAD would facilitate the design of legislative models that take better account of doctors’ concerns. This may facilitate their greater participation in VAD and help address potential access issues arising from availability of willing doctors.
Objective: The issue in health is dynamic and full of development, although the more sophisticated medical technology does not mean that all diseases can be cured. In certain cases the patient is dying and tortured. Patients and/or their families sometimes ask to be freed the patient from suffering by ending their lives. This demand for euthanasia is a pro and a contra view in Indonesia, especially in terms of legality.
Method: The type of research in this article is normative research, using a statutory and conceptual approach analyzed and presented descriptively.
Results: The euthanasia is a health act that has legal implications. Although the Criminal Code does not explicitly mention the word euthanasia, however, based on the provisions of the Criminal Code it is stated that taking action to eliminate lives should not be carried out, even if the patient's family wishes. According to the law, social, religious and ethical norms of doctors, euthanasia is not allowed.
Conclusion: The euthanasia in Indonesia cannot be carried out formally because the legal basis governing it still prohibits such actions. This can be seen from the court's decision to reject euthanasia requests. In addition, norms and values are a barrier to the legalization of euthanasia practices in Indonesia.
L'ouvrage aborde des problèmes majeurs de l'éthique médicale actuelle. Il constate que dans le cadre de la santé, pour régler les conflits, on a besoin de recourir à une diplomatie : respectueuse de la loi, l'éthique ne se réfère pas, comme les morales et les religions, à des valeurs transcendantes. S'appuyant sur divers exemples - le sang, les machines - l'auteur montre comment l'éthique médicale affronte des situations dans lesquelles la rationalité ne peut que composer avec des éléments d'ordre symbolique.
Sont abordés également quelques problèmes posés par la robotique et l'informatique : loin de les proscrire, on cherche à leur trouver une juste place à l'intérieur d'un nouvel humanisme.