Eutanásia Voluntária Ativa, Suicídio Assistido, Ortotanásia e os Cuidados Paliativos: um panorama das discussões no Poder Legislativo Federal Brasileiro / Eutanàsia Voluntària Activa, Suïcidi Assistit, Ortotanàsia i Cures Pal·liatives: un panorama de les discussions en el Poder Legislatiu Federal brasiler / Eutanasia Voluntaria Activa, Suicidio Asistido, Ortotanasia y Cuidados Paliativos: un panorama de las discusiones en el Poder Legislativo Federal brasileño / Voluntary Active Euthanasia, Assisted Suicide, Orthothanasia and Palliative Care: An overview of the discussions in the Brazilian Federal Legislative Power

No âmbito das proposições legislativas brasileiras, buscou-se compreender os desafiose obstáculos no percurso delimitativo das práticas de fim de vida. Analisou-se 193 documentos, desde 1981 até 2020, com base na metodologia hermenêutica-dialética. Evidenciou-se distintas propostas regulamentadoras das práticas de eutanásia e ortotanásia,na relação com os cuidados paliativos. As associações dos termos “cuidados paliativos” e “ortotanásia”, em oposição à “eutanásia/suicídio assistido, revelaram a conflituosa construção de valores que perpassa nossa sociedade. Com a tramitação de projetos relacionados à ortotanásia e eutanásia, compreendemos o sentido das decisões políticas que envolvem as possibilidades de escolhas e liberdade das pessoas, entre o direito à vida e o direito à morte digna. Compreendemos a problemática da legalização da ortotanásia, como forma do poder legislativo se furtar ao debate sobre a eutanásia/suicídio assistido, como alternativa à distanásia e ao sofrimento no processo de morrer.(AU)

En el context de les propostes legislatives brasileres, busquem comprendre els reptes i obstacles en el camí cap a la delimitació de les pràctiques al final de la vida. S'han analitzat 193 documents, des de 1981 fins a 2020, basant-se en la metodologia hermenèutica-dialèctica. S'han evidenciat diferents propostes normatives per a les pràctiques d'eutanàsia i ortotanàsia, en relació als cures pal·liatius. Les associacions dels termes "cures pal·liatius" i "ortotanàsia", en oposició a "eutanàsia/suïcidi assistit", revelen la construcció conflictiva de valors que impregna la nostra societat. Amb la tramitació dels projectes relacionats amb la ortotanàsia i l'eutanàsia, entenem el sentit de les decisions polítiques que implica les possibilitats de tria i llibertat de les persones, entre el dret a la vida i el dret a una mort digna. Comprenguem el problema de la legalització de la ortotanàsia com una forma que el poder legislatiu eviti el debat sobre l'eutanàsia/suïcidi assistit, com a alternativa a la distanàsia i al patiment en el procés de morir.(AU)

En el ámbito de las propuestas legislativas brasileñas, se buscó comprender los desafíos y obstáculos en el camino de la regulación de las prácticas al final de la vida. Se analizaron 193 documentos desde 1981 hasta 2020, utilizando la metodología hermenéutica-dialéctica. Se evidenciaron diferentes propuestas regulatorias relacionadas con la eutanasia y la ortotanasia, en relación con los cuidados paliativos. La asociación de los términos "cuidados paliativos" y "ortotanasia", en contraposición a "eutanasia/suicidio asistido", reveló la conflictiva construcción de valores que atraviesa nuestra sociedad. Con la tramitación de proyectos relacionados con la ortotanasia y la eutanasia, comprendemos el sentido de las decisiones políticas que involucran las posibilidades de elección y libertad de las personas, entre el derecho a la vida y el derecho a una muerte digna. También comprendemos la problemática de la legalización de la ortotanasia como una forma de que el poder legislativo evite el debate sobre la eutanasia/suicidio asistido, como una alternativa a la distanasia y al sufrimiento en el proceso de morir.(AU)

Within the scope of Brazilian legislative proposals, we sought to understand the challenges and obstacles in the delimiting path of end-of-life practices. 193 documents were analyzed, from 1981 to 2020, based on the hermeneutic-dialectical methodology. Different regulatory proposals for the practices of euthanasia and orthothanasia, in relation to palliative care, were evidenced. The associations of the terms “palliative care” and “orthothanasia”, as opposed to “euthanasia/assisted suicide, revealed the conflicting construction of values that permeates our society. With the processing of projects related to orthothanasia and euthanasia, we understand the meaning of political decisions that involve the possibilities of choices and freedom of people, between the right to life and the right to a dignified death. We understand the problem of legalizing orthothanasia as a way for the legislative power to evade the debate on euthanasia/assisted suicide, as an alternative to dysthanasia and suffering in the dying process.(AU)

Assessment of capacity to give informed consent for medical assistance in dying: a qualitative study of clinicians' experience.

BACKGROUND: Under the Canadian Criminal Code, medical assistance in dying (MAiD) requires that patients give informed consent and that their ability to consent is assessed by 2 clinicians. In this study, we intended to understand how Canadian clinicians assessed capacity in people requesting MAiD. METHODS: This qualitative study used interviews conducted between August 2019 and February 2020, by phone, video and email, to explore how clinicians assessed capacity in people requesting MAiD, what challenges they had encountered and what tools they used. The participants were recruited from provider mailing listserves of the Canadian Association of MAiD Assessors and Providers and Aide médicale à mourir. Interviews were audio-recorded and transcribed verbatim. The research team met to review transcripts and explore themes as they emerged in an iterative manner. We used abductive reasoning for thematic analysis and coding, and continued to discuss until we reached consensus. RESULTS: The 20 participants worked in 5 of 10 provinces across Canada, represented different specialties and had experience assessing a total of 2410 patients requesting MAiD. The main theme was that, for most assessments, the participants used the conversation about how the patient had come to choose MAiD to get the information they needed. When the participants used formal capacity assessment tools, this was mostly for meticulous documentation, and they rarely asked for psychiatric consults. The participants described how they approached assessing cases of nonverbal patients and other challenging cases, using techniques such as ensuring a quiet environment and adequate hearing aids, and using questions requiring only "yes" or "no" as an answer. INTERPRETATION: The participants were comfortable doing MAiD assessments and used their clinical judgment and experience to assess capacity in ways similar to other clinical practices. The findings of this study suggest that experienced MAiD assessors do not routinely require formal capacity assessments or tools to assess capacity in patients requesting MAiD.

[Accumulation of health problems as grounds for euthanasia]. / Klaar met stapelen.

BACKGROUND: The accumulation of health problems as grounds for euthanasia often poses a challenge for physicians. The distinction between the accumulation of health problems and a 'completed life' is sometimes hard to make. Suffering is subjective and the question is if and to what extent pronounced anticipatory suffering and detachment should be considered in the request for euthanasia. CASE: A very old lady, who sets great store by propriety, requests euthanasia because she feels she will no longer be able to live an independent life. Her symptoms are related to a number of chronic degenerative disorders which have as yet not affected her functioning. Objectively, her case appears to be insufficiently severe. The physicians involved in her case differ in opinion until a new diagnosis resolves outstanding dilemmas. CONCLUSION: Chronic symptoms and loss of function, a diminishing capacity, limited life perspective and the inevitability of and fear for pending care dependency can make life intolerable for the elderly individual. Careful consideration of the suffering and an empathetic approach are key to responding appropriately to a request for euthanasia.

[Euthanasia in patients with dementia]. / Euthanasie bij patiënten met dementie.

BACKGROUND: Euthanasia in patients with dementia is legally permitted, but many physicians experience it as (too) complex. They are frightened of the legal consequences and do not know how to assess the nature of the suffering. They also find it difficult to assess the patient's ability to provide consent. CASE DESCRIPTION: Here we describe two cases of patients who were registered at Euthanasia Expertise Centre by a family member: a 72-year-old woman who had been diagnosed with Alzheimer disease 18 months previously and a 67-year-old man with Lewy body dementia. During the various consultations we had with them we were given a distinct picture of the nature of their suffering, and it became clear to us why they found this suffering unbearable. CONCLUSION: By paying extra attention to the assessment of the ability to give consent and by exploring the degree of suffering experienced it is possible to meet the request for euthanasia by a patient with dementia within the framework of the law.

Medical Assistance in Dying: A Review of Canadian Regulatory Documents.

After years of heated debate about the issue, medical assistance in dying (MAiD) was legalized in Canada in 2016. Canada became the first jurisdiction where MAiD may be delivered by nurse practitioners as well as physicians. Experience has revealed significant public demand for the service, and Canadians expect nurses to advocate for safe, high-quality, ethical practice in this new area of care. Pesut et al. offer a superb analysis of the related Canadian nursing regulatory documents and the challenges in creating a harmonized approach that arise in a federation where the Criminal Code is a federal entity and the regulation of health care providers and delivery of care fall under provincial and territorial legislation. Organizations like the Canadian Nurses Association contribute to the development of good legislation by working with partners to present evidence to help legislators consider impacts on public health, health care, and providers. Nursing regulators across Canada responded quickly to the unfolding policy landscape as the federal legislation evolved and will face that task again: In February 2020, the federal government tabled legislation to relax conditions related to MAiD requests that will force regulators and professional associations back to public advocacy and legislative tables. The success of the cautious approach exercised by nursing bodies throughout this journey should continue to reassure Canadians that their high trust in the profession is well placed.

Options of Last Resort: Palliative Sedation, Physician Aid in Dying, and Voluntary Cessation of Eating and Drinking.

Some patients with terminal and degenerative illnesses request assistance to hasten death when suffering is refractory to palliative care, or they strongly desire to maximize their autonomy and dignity and minimize suffering. Palliative sedation (PS), voluntarily stopping eating and drinking (VSED), and physician-assisted death (PAD) are possible options of last resort. A decision to choose PS can be made by an informed surrogate decision maker, whereas intact decision-making capacity is required to choose VSED or PAD. For all palliative treatments of last resort, the risk of harm is minimized by the use of checklists, and establishment of policies and procedures.

Euthanasia and physician-assisted suicide for patients with depression: thought-provoking remarks.

Euthanasia and medical assistance in dying entail daunting ethical and moral challenges, in addition to a host of medical and clinical issues, which are further complicated in cases of patients whose decision-making skills have been negatively affected or even impaired by psychiatric disorders. The authors closely focus on clinical depression and relevant European laws that have over the years set firm standards in such a complex field. Pertaining to the mental health realm specifically, patients are required to undergo a mental competence assessment in order to request aid in dying. The way psychiatrists deal and interact with decisionally capable patients who have decided to end their own lives, on account of sufferings which they find to be unbearable, may be influenced by subjective elements such as ethical and cultural biases on the part of the doctors involved. Moreover, critics of medical aid in dying claim that acceptance of such practices might gradually lead to the acceptance or practice of involuntary euthanasia for those deemed to be nothing more than a burden to society, a concept currently unacceptable to the vast majority of observers. Ultimately, the authors conclude, the key role of clinicians should be to provide alternatives to those who feel so hopeless as to request assistance in dying, through palliative care and effective social and health care policies for the weakest among patients: lonely, depressed or ill-advised people.

Euthanasia and assisted suicide in the context of psychiatric disorders: sharing experiences from the Low Countries. / Eutanazja i wspomagane samobójstwo w kontekscie zaburzen psychicznych w krajach niderlandzkich: doswiadczenie poparte praktyka.

Euthanasia and physician assisted suicide (E/PAS) in the context of unbearable psychological or emotional suffering related to psychiatric disorders (psychiatric E/PAS) is ahighly debated topic. In Belgium and The Netherlands, the law allows for psychiatric E/PAS since 2002. The aim of this article is to give an overview of the Belgian and Dutch experiences and the questions raised during the last decade of real-life experiences with psychiatric E/PAS. We use the available national data on psychiatric E/PAS to present a quantitative overview of the current situation. In addition, we identified different challenges; i.e. ethical, medicalpsychiatric and legal, that increasingly impact and change the attitudes within the medical and psychiatric professional community towards psychiatric E/PAS.

First prosecution of a Dutch doctor since the Euthanasia Act of 2002: what does the verdict mean?

On 11 September 2019, the verdict was read in the first prosecution of a doctor for euthanasia since the Termination of Life on Request and Assisted Suicide (Review Procedures) Act of 2002 was installed in the Netherlands. The case concerned euthanasia on the basis of an advance euthanasia directive (AED) for a patient with severe dementia. In this paper we describe the review process for euthanasia cases in the Netherlands. Then we describe the case in detail, the judgement of the Regional Review Committees for Termination of Life on Request and Euthanasia (RTE) and the judgement of the medical disciplinary court. Both the review committees and the disciplinary court came to the conclusion there were concerns with this case, which mainly hinged on the wording of the AED. They also addressed the lack of communication with the patient, the absence of oral confirmation of the wish to die and the fact that the euthanasia was performed without the patient being aware of this. However, the doctor was acquitted by the criminal court as the court found she had in fact met all due care criteria laid down in the act. We then describe what this judgement means for euthanasia in the Netherlands. It clarifies the power and reach of AEDs, it allows taking conversations with physicians and the testimony of the family into account when interpreting the AED. However, as a practical consequence the prosecution of this physician has led to fear among doctors about prosecution after euthanasia.

Conscientious objection and moral distress: a relational ethics case study of MAiD in Canada.

Conscientious objection has become a divisive topic in recent bioethics publications. Discussion has tended to frame the issue in terms of the rights of the healthcare professional versus the rights of the patient. However, a rights-based approach neglects the relational nature of conscience, and the impact that violating one's conscience has on the care one provides. Using medical assistance in dying as a case study, we suggest that what has been lacking in the discussion of conscientious objection thus far is a recognition and prioritising of the relational nature of ethical decision-making in healthcare and the negative consequences of moral distress that occur when healthcare professionals find themselves in situations in which they feel they cannot provide what they consider to be excellent care. We propose that policies that respect the relational conscience could benefit our healthcare institutions by minimising the negative impact of moral distress, improving communication among team members and fostering a culture of ethical awareness. Constructive responses to moral distress including relational cultivation of moral resilience are urged.

Ghent University Hospital's protocol regarding the procedure concerning euthanasia and psychological suffering.

BACKGROUND: Notwithstanding fears of overly permissive approaches and related pleas to refuse euthanasia for psychological suffering, some Belgian hospitals have declared that such requests could be admissible. However, some of these hospitals have decided that such requests have to be managed and carried out outside their walls. MAIN TEXT: Ghent University Hospital has developed a written policy regarding requests for euthanasia for psychological suffering coming from patients from outside the hospital. The protocol stipulates several due care criteria that go beyond the requirements of the Belgian Euthanasia Law. For instance, the legally required first and second consulted physicians should all be psychiatrists and be affiliated with a psychiatry department of a Flemish university hospital. Moreover, euthanasia for psychological suffering can only be performed if the advices of these consulted physicians are positive. Importantly, preliminary reflection by the multidisciplinary Hospital Ethics Committee was introduced to discuss every request for euthanasia for psychological suffering coming from outside the hospital. CONCLUSION: In this way, the protocol supports psychiatrists faced with the complexities of assessing such requests, improves the quality of euthanasia practice by ensuring transparency and uniformity, and offers patients specialised support and guidance during their euthanasia procedure. Nevertheless, some concerns still remain (e.g. relating to possible unrealistic patient expectations and to the absence of aftercare for the bereaved or for patients whose requests have been refused).

Assisted Death: A Call to Action to Improve End-of-Life Care.

Can we do more to address underlying reasons for this irrevocable choice?

Educational needs of healthcare professionals and members of the general public in Alberta Canada, 2 years after the implementation of medical assistance in dying.

Medical assistance in dying (MAID) was implemented across Canada in June of 2016, after each Canadian province and territory had developed their own MAID processes. Over the first 2 years, just under 300 Alberta citizens received MAID services, a very small proportion (<0.5%) of all 52,000 decedents. An online 2017-2018 survey of Alberta healthcare providers and members of the general public was conducted to assess and compare their knowledge of MAID. A devised brief survey tool was posted online, with broad-based advertising for voluntary participants. The survey was taken down after 282 Albertans had participated (100+ healthcare professionals and 100+ members of the general public), a non-representative sample. Through SPSS data analysis, educational needs were clearly evident as only 30.5% knew the correct approximate number of MAID deaths to date, 33.0% correctly identified the point in life when MAID can be done, 48.9% correctly identified the locations where MAID can be performed, 49.3% correctly identified who can stop MAID from being carried out, and 52.8% correctly identified how MAID is performed to end life. Healthcare professionals were significantly more often correct; as were participants born in Canada, university degree holders, working persons, those who identified a religion, had experience with death and dying care, had direct prior experience with death hastening, thought adults had a right to request and receive MAID, had past experience with animal euthanasia, and had hospice/palliative education or work experience. Age, gender, and having previously worked or lived in a country where assisted suicide or euthanasia was performed were not significant for educational needs. These findings indicate new approaches to meet sudden assisted suicide educational needs are needed.

Medical Assistance in Dying: A Review of Canadian Nursing Regulatory Documents.

Canada's legalization of Medical Assistance in Dying (MAiD) in 2016 has had important implications for nursing regulators. Evidence indicates that registered nurses perform key roles in ensuring high-quality care for patients receiving MAiD. Further, Canada is the first country to recognize nurse practitioners as MAiD assessors and providers. The purpose of this article is to analyze the documents created by Canadian nursing regulatory bodies to support registered nurse and nurse practitioner practice in the political context of MAiD. A search of Canadian provincial and territorial websites retrieved 17 documents that provided regulatory guidance for registered nurses and nurse practitioners related to MAiD. Responsibilities of registered nurses varied across all documents reviewed but included assisting in assessment of patient competency, providing information about MAiD to patients and families, coordinating the MAiD process, preparing equipment and intravenous access for medication delivery, coordinating and informing health care personnel related to the MAiD procedure, documenting nursing care provided, supporting patients and significant others, and providing post death care. Responsibilities of nurse practitioners were identified in relation to existing legislation. Safety concerns cited in these documents related to ensuring that nurses understood their boundaries in relation to counseling versus informing, administering versus aiding, ensuring safeguards were met, obtaining informed consent, and documenting. Guidance related to conscientious objection figured prominently across documents. These findings have important implications for system level support for the nursing role in MAiD including ongoing education and support for nurses' moral decision making.

Psychiatric patients requesting euthanasia: Guidelines for sound clinical and ethical decision making.

BACKGROUND: Since Belgium legalised euthanasia, the number of performed euthanasia cases for psychological suffering in psychiatric patients has significantly increased, as well as the number of media reports on controversial cases. This has prompted several healthcare organisations and committees to develop policies on the management of these requests. METHOD: Five recent initiatives that offer guidance on euthanasia requests by psychiatric patients in Flanders were analysed: the protocol of Ghent University Hospital and advisory texts of the Flemish Federation of Psychiatry, the Brothers of Charity, the Belgian Advisory Committee on Bioethics, and Zorgnet-Icuro. These were examined via critical point-by-point reflection, focusing on all legal due care criteria in order to identify: 1) proposed measures to operationalise the evaluation of the legal criteria; 2) suggestions of additional safeguards going beyond these criteria; and 3) remaining fields of tension. RESULTS: The initiatives are well in keeping with the legal requirements but are often more stringent. Additional safeguards that are formulated include the need for at least two positive advices from at least two psychiatrists; an a priori evaluation system; and a two-track approach, focusing simultaneously on the assessment of the patient's euthanasia request and on that person's continuing treatment. Although the initiatives are similar in intent, some differences in approach were found, reflecting different ethical stances towards euthanasia and an emphasis on practical clinical assessment versus broad ethical reflection. CONCLUSIONS: All initiatives offer useful guidance for the management of euthanasia requests by psychiatric patients. By providing information on, and proper operationalisations of, the legal due care criteria, these initiatives are important instruments to prevent potential abuses. Apart from the additional safeguards suggested, the importance of a decision-making policy that includes many actors (e.g. the patient's relatives and other care providers) and of good aftercare for the bereaved are rightly stressed. Shortcomings of the initiatives relate to the aftercare of patients whose euthanasia request is rejected, and to uncertainty regarding the way in which attending physicians should manage negative or conflicting advices, or patients' suicide threats in case of refusal. Given the scarcity of data on how thoroughly and uniformly requests are handled in practice, it is unclear to what extent the recommendations made in these guidelines are currently being implemented.

Dementia, End of Life, and Euthanasia: A Survey Among Dementia Specialists Organized by the Belgian Dementia Council.

BACKGROUND: Palliative care and Advance Care Planning (ACP) are increasingly recommended for an optimal management of late-stage dementia. In Belgium, euthanasia has been decriminalized in 2002 for patients who are "mentally competent" (interpreted as non-demented). It has been suggested that advance directives for euthanasia (ADE) should be made possible for dementia patients. OBJECTIVE: This study presents the results of an internet survey among Belgian dementia specialists. METHODS: In 2013, the Belgian Dementia Council (BeDeCo) organized a debate on end of life decisions in dementia. Participants were medical doctors who are specialists in the dementia field. After the debate, an anonymous internet survey was organized. The participation rate was 55%. The sample was representative of the BeDeCo members. RESULTS: The results showed consensus in favor of palliative care and ACP, although ACP is not systematically addressed in practice. Few patients with dementia have requested euthanasia, but for those who did the participants had agreed to implement it for some patients. A majority of participants (94%) believe that most patients and their families are poorly informed about euthanasia. Although most participants (77%) said they approved the Law on euthanasia, 65% said they were against an extension of the Law to allow ADE for dementia. CONCLUSION: Palliative care and ACP are clearly accepted by professionals, although a gap between recommendation and practice remain. Euthanasia is a much more debated issue, even if a majority of professionals are, in principle, in favor of the current Law and seem to disapprove with a Law change allowing ADE for dementia. A better education for both health professionals and the lay public will be a key element in the future.

Legal and ethical implications of defining an optimum means of achieving unconsciousness in assisted dying.

A decision by a society to sanction assisted dying in any form should logically go hand-in-hand with defining the acceptable method(s). Assisted dying is legal in several countries and we have reviewed the methods commonly used, contrasting these with an analysis of capital punishment in the USA. We expected that, since a common humane aim is to achieve unconsciousness at the point of death, which then occurs rapidly without pain or distress, there might be a single technique being used. However, the considerable heterogeneity in methods suggests that an optimum method of achieving unconsciousness remains undefined. In voluntary assisted dying (in some US states and European countries), the common method to induce unconsciousness appears to be self-administered barbiturate ingestion, with death resulting slowly from asphyxia due to cardiorespiratory depression. Physician-administered injections (a combination of general anaesthetic and neuromuscular blockade) are an option in Dutch guidelines. Hypoxic methods involving helium rebreathing have also been reported. The method of capital punishment (USA) resembles the Dutch injection technique, but specific drugs, doses and monitoring employed vary. However, for all these forms of assisted dying, there appears to be a relatively high incidence of vomiting (up to 10%), prolongation of death (up to 7 days), and re-awakening from coma (up to 4%), constituting failure of unconsciousness. This raises a concern that some deaths may be inhumane, and we have used lessons from the most recent studies of accidental awareness during anaesthesia to describe an optimal means that could better achieve unconsciousness. We found that the very act of defining an 'optimum' itself has important implications for ethics and the law.

Hastening death and respect for dignity: Kantianism at the end of life.

Suppose that a young athlete has just become quadriplegic. He expects to live several more decades, but out of self-interest he autonomously chooses to engage in physician-assisted suicide (PAS) or voluntary active euthanasia (VAE). Some of us are unsure whether he or his physician would be acting rightly in ending his life. One basis for such doubt is the notion that persons have dignity in a Kantian sense. This paper probes responses that David Velleman and Frances Kamm have suggested to the question of whether participating in PAS or VAE to benefit oneself, as the young man might, respects the dignity of persons, specified in an orthodox Kantian way. Velleman claims that it does not, while Kamm insists that, in certain circumstances, it does. I argue against Kamm's position. I go on to contend that while orthodox Kantianism might provide a basis for moral concern regarding the case of the young quadriplegic, it suffers from two serious shortcomings. First, it implies that terminally ill patients are wrong to request VAE or engage in PAS to avoid intense suffering, at least when this suffering has not yet overwhelmed their reason. Second, orthodox Kantianism implies that it is wrong for physicians to withdraw such patients from life-sustaining treatments, even if they request it. To remedy these shortcomings, I sketch an unorthodox Kantian account of respect for the dignity of persons. This account promises to capture the idea that it would be morally problematic for doctors to help the young quadriplegic to die, but to avoid the shortcomings of an orthodox Kantian account.