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.
Medical assistance in dying (MAID) legislation in Canada followed much deliberation after the Supreme Court of Canada's ruling in Carter v. Canada Included in this deliberation was the Special Joint Committee on Physician Assisted Dying's recommendation to extend MAID legislation beyond the inclusion of adults to mature minors. Children's agency is a construct advanced within childhood studies literature which entails eliciting children's voices in order to recognise children as active participants in constructing their own childhoods. Using this framework, we consider the possible extension of MAID legislation to most minors. We highlight important questions regarding how insights from children's voices could be mobilised in the life or death context of MAID. We conclude that children's voices have the potential to help determine their eligibility for MAID; however, incorporating children's voices in the context of MAID requires careful consideration due to the complexity of voice.
Purpose: Life-sustaining treatment (LST) decisions for patients and caregivers at the end-of-life (EOL) process are supported by the “Act on Hospice and Palliative Care and Decisions on LST for Patients at the EOL,” enforced in February 2018. It remains unclear whether the act changes EOL decisions and LST implementation in clinical practice. For this study, we investigated patients’ decision-making regarding LSTs during the EOL process since the act’s enforcement.
Materials and Methods: Retrospective reviews were conducted on adult patients who were able to decide to terminate LST and died at Seoul National University Hospital between February 5, 2018, and February 5, 2019. We examined demographics, who made the decisions, the type and date of documentation confirming patient's LST, and whether the LST was withheld or withdrawn.
Results: Of 809 patients who were enrolled, 29% (n=231) completed forms regarding LST themselves, and 71% (n=578) needed family members to decide. The median time from confirmation of the EOL process to death and from the Advance Statement to death were 2 and 5 days, respectively (both ranges, 0 to 244). In total, 90% (n=727) of patients withheld treatment, and 10% (n=82) withdrew it. We found a higher withdrawal rate when family members made the decisions (13.3% vs. 1.7%, p < 0.001).
Conclusion: After the act’s enforcement, withdrawing LSTs became lawful and self-determination rates increased. Family members still make 71% of decisions regarding LSTs, but these are often inconsistent with the patients’ wishes; thus, further efforts are needed to integrate the new act into clinical practice.
Objectifs et Contexte : C’est au décours de la prise en charge d’un résident polyhandicapé dyscommunicant en situation palliative, pour lequel le projet de vie et de soins a été établi par l’intermédiaire d’une réflexion collégiale, que l’équipe soignante s’est interrogée sur l’anticipation des directives de fin de vie pour d’autres résidents. Quelles seraient, alors, les conséquences pour ces résidents et leurs familles d’anticiper une telle réflexion dans ce contexte ?
Methodologie : Les résidents et leur famille sont vus une première fois en binôme (médecin/psychologue ou infirmière). À l’issue de ce premier entretien, la situation est signalée au réseau afin d’initier une réflexion. Nous organisons ensuite une réunion collégiale si besoin à laquelle participent les familles, le médecin du réseau, le médecin traitant, deux référents soignants et une infirmière de la MAS. A posteriori, les familles sont contactées par téléphone afin de réaliser une enquête concernant leur vécu.
Résultats et discussion : Sept résidents ont fait l’objet de ce dispositif. Trois d’entre eux ont nécessité la réalisation d’une réunion collégiale. Deux d’entre eux ont été accompagnés jusqu’à leur décès au sein de la résidence. Pour le troisième, il a été décidé de ne pas mettre en place de nutrition artificielle. Les 4 derniers résidents et l’équipe ont été vus en entretien par le réseau. Les 7 familles contactées a posteriori ont dit ressentir un soulagement ou un effet déculpabilisant.
Conclusion : Ces résultats permettent de penser que l’anticipation de la réflexion avec les familles des résidents polyhandicapés dyscommunicants pourrait avoir des conséquences positives pour les résidents et leurs familles.
Canada’s government has tabled new legislation that would remove some of the restrictions placed on medical aid in dying, most notably the requirement that applicants suffer from a terminal condition which makes their death “reasonably foreseeable.”
The new bill will also permit eligible patients to ask for a medically assisted death in advance directives—and to have that wish respected even if they are no longer mentally able to give informed consent at time of death.
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Nearly 20 years ago the EURONIC study reported that French neonatologists sometimes deemed it legitimate to terminate the lives of newborn infants when the prognosis appeared extremely poor. Parents were not always informed of these decisions. Major change has occurred since then and is described herein.
MATERIAL AND METHODS: A survey was conducted in the Île-de-France region, from 1 January to 31 January 2016. Professionals from 15 neonatal intensive care units (NICUs) were invited to complete a questionnaire.
RESULTS: A total of 702 questionnaires were collected and 670 responses were analyzed. Knowledge of the law differed according to professional status, with 71% of MDs (medical staff, MS), compared with 28% of nonmedical staff (NMS) declaring that they had good knowledge of the law. Most MDs and NMS believed that withholding or withdrawing life-sustaining treatments (WWLST) could be decided and implemented after a delay. Half of them thought that WWLST would always result in death. Although required by law, a consulting MD attended the collegial meeting required before deciding on WWLST in only half of the cases. Parents were almost always informed of the decision thereafter by the physician in charge of their infant. The most frequent disagreement with parents was observed when WWLST was the option selected. In this case, most professionals suggested postponing WWLST, continuing intensive care and dialogue with parents, aiming at a final shared decision. Major differences were observed between NICUs with regard to the withdrawal of artificial nutrition and hydration. Finally, 14% of MDs declared that infant active terminations of life still occurred in their NICU. Major differences concern WWLST and active termination of life, whose meaning has been partly modified since 2001.
CONCLUSION: Several major changes were observed in this survey: (1) treatment withdrawal decisions are made today in agreement with the law; (2) parents' information and involvement in the decision process have profoundly changed; (3) active termination of life (euthanasia) very rarely occurs; only at the end of a process in accordance with ethical principles and within the law is this decision made.
The purpose of this article is to analyze the main medical, legal, and ethical issues and challenges of euthanasia in the digital age. The methods that were used in this study are historical, logical, empirical, as well as comparative legal method for comparison of laws and practices of the EU and post-Soviet countries, including Ukraine. This choice determined by the fact that both groups of countries have common features and relations, while the features of their development affect approaches to regulating such sensitive and potentially open to abuse problems as euthanasia. There is no final legal answer as to whether to legalize, decriminalize or prohibit euthanasia in any of its forms. The features and legal terms of active and passive, voluntary and non-voluntary euthanasia and assisted suicide, especially for psychiatric and minor patients were researched, as well as conflicting arguments, which include individual autonomy, right to choose, the opportunity to get rid of suffering, as well as undermining the practice of palliative care, abuse in cases of vulnerable and dependent patients, moral burden on the doctors. The issue of control of the practice of euthanasia is complicated, given the extent to which it is possible to obtain informed consent, establish criteria for suffering and hopelessness, check the persistence, conviction and validity of requests for euthanasia, especially in the digital era. The potential legislation and judicial practice should provide for strict and effective guarantees, respect for the beliefs of each person and the right not to participate in any contentious practices, the balance of human rights and social values.
On June 19, 2019, euthanasia legislation in Victoria, Australia, came into effect. The Voluntary Assisted Dying Act 2017 (Vic) allows individuals whose life expectancy is 6 months or less to seek medical assistance to end their life. Patients with certain progressive neurodegenerative conditions, such as multiple sclerosis or motor neuron disease, can apply within 1 year of their expected death. People with conditions that might hinder their decision-making capacity, such as advanced Alzheimer's disease, are excluded, as are people who have a mental illness or disability, without a terminal illness. By Dec 31, 2019, 52 people had voluntarily ended their lives using the new legislation.
French end-of-life law aims at protecting patients from unreasonable treatments, but has been used to force caregivers to prolong treatments deemed unreasonable. We describe six cases (five intensive care unit patients including two children) where families disagreed with a decision to withdraw treatments and sued medical teams. An emergent inquiry was instigated by the families. In two cases, the court rejected the families' inquiries. In two cases, the families appealed the decision, and in both the first jurisdiction decision was confirmed, compelling caregivers to pursue treatments, even though they deemed them unreasonable. We discuss how this law may be perverted. Legal procedures may result in the units' disorganisation and give rise to caregivers' stress. Families' requests may be subtended by religious beliefs. French end-of-life law has benefits in theoretically constraining physicians to withhold or withdraw disproportionate therapies. These cases underline some caveats and the perverse effects of its literal reading.
BACKGROUND: Some patients do not receive adequate pain and symptom relief at the end of life, causing distress to patients, families and healthcare professionals. It is unclear whether undertreatment of symptoms occurs, in part, because of nurses' concerns about legal and/or disciplinary repercussions if the patient dies after medication is administered.
AIM: The aim was to explore nurses' experiences and knowledge of the law relating to the provision of end-of-life pain and symptom relief.
DESIGN: Semi-structured interviews with nurses were assessed using a six-stage hybrid thematic analysis technique.
SETTING/PARTICIPANTS: Four face-to-face and 21 telephone interviews were conducted with nurses who routinely prescribed and/or administered pain and symptom relief to patients approaching the end of their lives in Queensland and New South Wales, Australia.
RESULTS: While many nurses had no personal experiences with legal or professional repercussions after a patient had died, the fear of hastening death and being held accountable was frequently discussed and regarded as relevant to the provision of inadequate pain and symptom relief. Concerns included potential civil or criminal liability and losing one's job, registration or reputation. Two-thirds of participants believed that pain relief was sometimes withheld because of these legal concerns. Less than half of the interviewed nurses demonstrated knowledge of the doctrine of double effect, the legal protection for health professionals who provide end-of-life pain and symptom relief.
CONCLUSION: Education is urgently required to strengthen nurses' knowledge of the legal protections supporting the provision of appropriate palliative medication, thereby improving their clinical practice with end-of-life patients.
Although death by neurologic criteria (brain death) is legally recognized throughout the United States, state laws and clinical practice vary concerning three key issues: (1) the medical standards used to determine death by neurologic criteria, (2) management of family objections before determination of death by neurologic criteria, and (3) management of religious objections to declaration of death by neurologic criteria. The American Academy of Neurology and other medical stakeholder organizations involved in the determination of death by neurologic criteria have undertaken concerted action to address variation in clinical practice in order to ensure the integrity of brain death determination. To complement this effort, state policymakers must revise legislation on the use of neurologic criteria to declare death. We review the legal history and current laws regarding neurologic criteria to declare death and offer proposed revisions to the Uniform Determination of Death Act (UDDA) and the rationale for these recommendations.