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.
Face au refus de soins, l’infirmier doit s’interroger. En effet, le consentement du patient est essentiel et doit être recherché. Dans le cas contraire, quelle est la responsabilité de l’infirmier ? Tout dépend des situations qui sont envisagées par la loi.
A challenging issue in contemporary Canadian Medicare is the evolution of end-of-life care. Utilizing data from the 2016 and 2018 Health Care in Canada (HCIC) surveys, this paper compares the support and priorities of the adult public (n = 1500), health professionals (n = 400), and administrators (n = 100) regarding key components for end-of-life care just prior to and post legalization of medical assistance in dying (MAiD) in Canada. In 2016 and 2018, the public, health professionals and administrators strongly supported enhanced availability of all proposed end-of-life care options: pain management, hospice and palliative care, home care supports, and medically assisted death. In 2018, when asked which option should be top priority, the public rated enhanced medically assisted death first (32%), followed by enhanced hospice and palliative care (22%) and home care (21%). Enhanced hospice and palliative care was the top priority for health professionals (33%), while administrators rated enhanced medically assisted death first (26%). Despite legalization and increasing support for MAiD over time, health professionals have increasing fear of legal or regulatory reprisal for personal involvement in medically assisted death, ranging from 38% to 84% in 2018, versus 23% to 42% in 2016. While administrators fear doubled since 2016 (40%-84%), they felt the necessary system supports were in place to easily implement medically assisted death. Optimal management of end-of-life care is strongly supported by all stakeholders, although priorities for specific approaches vary. Over time, professionals increasingly supported MAiD but with a rising fear of legal/regulatory reprisal despite legalization. To enhance future end-of-life care patterns, continued measurement and reporting of implemented treatment options and their system supports, particularly around medically assisted death, are needed.
BACKGROUND: In June 2019, the Australian state of Victoria joined the growing number of jurisdictions around the world to have legalised some form of voluntary assisted dying. A discourse of safety was prominent during the implementation of the Victorian legislation.
MAIN TEXT: In this paper, we analyse the ethical relationship between legislative "safeguards" and equal access. Drawing primarily on Ruger's model of equal access to health care services, we analyse the Victorian approach to voluntary assisted dying in terms of four dimensions: horizontal equity, patient agency, high quality care, and supportive social norms. We argue that some provisions framed as safeguards in the legislation create significant barriers to equal access for eligible patients.
CONCLUSIONS: While safety is undoubtedly ethically important, we caution against an overemphasis on safeguarding in voluntary assisted dying legislation given the implications for equal access.
In 2019, the Voluntary Assisted Dying Act 2017 (Vic) came into force. Thereupon, Victoria became the first State in Australia to enact such a law since the Commonwealth of Australia overturned Northern Territory legislation in 1997. Because of the difficulties in the introduction of Victorian law, it is extremely conservative, with many safeguards. There are significant limitations to this law which will result in significant ethical difficulties for medical practitioners and their patients. Four problematic areas of the law are discussed: the prohibition on health practitioners introducing the subject, introduction of the subject of voluntary assisted dying to patients; difficulties in obtaining access to treatment in certain populations in Victoria; the arbitrary minimum age of 18 to be able to access voluntary assisted dying; and the difficulties for patients and practitioners in evaluating the capacity of patients with mental illness and cognitive difficulties. Practical solutions to these difficulties will be proffered and discussed.