No (true) right to die: barriers in access to physician-assisted death in case of psychiatric disease, advanced dementia or multiple geriatric syndromes in the Netherlands.

Even in the Netherlands, where the practice of physician-assisted death (PAD) has been legalized for over 20 years, there is no such thing as a 'right to die'. Especially patients with extraordinary requests, such as a wish for PAD based on psychiatric suffering, advanced dementia, or (a limited number of) multiple geriatric syndromes, encounter barriers in access to PAD. In this paper, we discuss whether these barriers can be justified in the context of the Dutch situation where PAD is legally permitted for those who suffer unbearably and hopelessly as a result of medical conditions. Furthermore, we explore whether there are options to address some of the barriers or their consequences, both within the Dutch legal framework or by adjusting the legal framework, and whether these options are feasible. We conclude that although there are insufficient arguments to overrule the doctor's freedom of conscience in the Netherlands, there are ways to address some of the barriers, mainly by offering support to doctors that would be willing to support a request. Moreover, we believe it is morally required to reduce or mitigate where possible the negative consequences of the barriers for patients, such as the long waiting time for those who suffer from psychiatric disorders, because it is unlikely the adjustments suggested to the system will ensure reasonable access for these patient groups.

Autonomia em demência avançada e estados vegetativos permanentes na iminência de morte / Autonomía en demencia avanzada y estados vegetativos permanentes al borde de la muerte / Autonomy in advanced dementia and permanent vegetative states in imminent death

RESUMO. A autonomia privada existencial, como expressão da dignidade da pessoa humana, representa para o indivíduo a possibilidade de agir em conformidade com valores e significados eleitos essenciais na elaboração do seu projeto de vida. Neste estudo, seus autores, dois terapeutas ocupacionais, dois advogados e uma psicóloga, somam saberes e dialogam com intuito de demarcar a relevância da autonomia privada existencial nas condições de demência avançada, nos estados vegetativos permanentes e na iminência de morte. Na tarefa a que se propõem, os autores ponderam sobre suas experimentações e interlocuções enquanto profissionais de formação acadêmica diversificada, inclinados a ofertar espaços para comunicar vida e acolher dores. São apresentadas e discutidas as bases jurídicas da autonomia privada, assim como os pressupostos da Logoterapia de Viktor Frankl em defesa da liberdade de vontade e da dignidade no final da vida.

RESUMEN La autonomía existencial privada, como expresión de la dignidad de la persona humana, representa para el individuo la posibilidad de actuar de acuerdo con valores y significados elegidos esenciales en la elaboración de su proyecto de vida. En este estudio, sus autores, dos terapeutas ocupacionales, dos abogados y un psicólogo suman conocimiento y diálogo con el fin de demarcar la relevancia de la autonomía privada existencial en condiciones de demencia avanzada, en estados vegetativos permanentes y muerte inminente. En la tarea que proponen, los autores reflexionan sobre sus vivencias e interlocuciones como profesionales con una formación académica diversificada, inclinados a ofrecer espacios para comunicar la vida y acoger el dolor. Se presentan y discuten las bases legales de la autonomía privada, así como los supuestos de la Logoterapia de Viktor Frankl en defensa de la libertad de voluntad y dignidad al final de la vida.

ABSTRACT. Existential private autonomy, as an expression of the dignity of the human person, represents for the individual the possibility of acting in accordance with essential values and meanings for elaboration of their life project. The authors of this study, two occupational therapists, two lawyers and a psychologist gather their knowledge and dialogue to demarcate the relevance of existential private autonomy in conditions of advanced dementia, in permanent vegetative states and imminent death. In the task proposed, the authors pondered over their experiences and dialogues as professionals with a diversified academic background, inclined to provide spaces to communicate life and welcome pain. The legal bases of private autonomy are presented and discussed, as well as the assumptions of Viktor Frankl's Logotherapy in defense of freedom of will and dignity at the end of life.

Uninformed consent: Who knows what Ivan Ilyich would have thought?

ABSTRACT: In the modern era, when prolonging life is not an option, the end-of-life discussions are unavoidably influenced by Neuroethics. Despite this, it is interestingly evident how the sentiments of a terminal patient of 1885 and a physician of 2020, are still comparable. This paper pre-sents the arguments behind the so-called "Therapeutic Misconception" and the aim of palliative care to provide dying patients support. It is essential to address priorities of informed consent, signed before any remedy is provided. A key component of the newest Neuroscience research is the analysis of motivation and free will. So, it is necessary to comprehend if the patient struggles to feel at peace with these aspects of his "right to die": Is he free to choose or is he influenced by the doctors? Is this confusion an example of "Therapeutic Misconception"? Is his Informed Consent totally "Informed"? In order to broaden our understanding, we account for many critical situations, such as the mentally impaired Psychiatric patients or the famous Italian case of Eluana Englaro. In addition, we suggested some current approaches such as Artificial Intelligence, useful in preserving some cognitive functions the patient may have lost. Furthermore, research in this field is very critical and in some Catholic countries like Italy, people faced difficulties accepting the idea of the "Anticipated directives". In general, whatever the mental status and whatever the terminal state, the patients seem still far from handling their own auto-determination and their Consent, even if the ultimate goal is to die with dignity.

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.

Patient Rights at the End of Life: The Ethics of Aid-in-Dying.

PURPOSE/OBJECTIVES: The end-of-life needs and desires of patients, whether it is related to a terminal illness or age-related end-of-life physiological function, can vary from patient to patient. Each dying patient's case should be approached in an individual and patient-centered fashion while supporting the dying patient's desired preferences related to end-of-life treatment. This serves to recognize the dying patient's individual rights related to self-determination of preserving his or her dignity during the end-of-life process. As the U.S. population continues to age at the fastest pace in history, it is vital for end-of-life patients and their family members, health care providers, and lawmakers to consider how health policy can drive legislation that supports the dying patient's right to express his or her dignity and own end-of-life desires related to aid-in-dying by allowing health care providers to legally provide physician-assisted health (PAD) and death with dignity (DD) the end-of-life care dying patients prefer. PRIMARY PRACTICE SETTING(S): Palliative, hospice, and long-term care. FINDINGS/CONCLUSIONS: When state laws do not support a terminally ill person's ability to make his or her own end-of-life decisions based on his or her own preferences and desires related to PAD and dignity in dying, there can be moral conflictions with the existing ethical principles that can contribute to additional distress and anxiety in the terminally ill patient. Not allowing the terminally ill patient the legal right to choose his or her preferences and desires at the end of life goes against the freedom of the patient to choose. The aging population is growing quickly, and people are living longer, which means the frail elderly in their final stages of death due to multisystem organ failure might also desire to have the option of PAD that supports dignity in dying. IMPLICATIONS FOR CASE MANAGEMENT PRACTICE: Case managers are an instrumental and integral part of the end-of-life care team. They are held to the same standard of practice as clinical care providers when it comes to promoting the biomedical ethical points autonomy, beneficence, nonmaleficence, justice, and fidelity. Following these ethical principles is critical for case managers to consider when supporting the desires and preferences of terminally ill patients. Case managers should be involved in all the patient-centered decision making for a terminally ill patient's desire for DD and PAD. It is critical for case managers to follow their organization's defined code of professional conduct as well their specific professional organization and professional certifying body's defined code of ethics and conduct despite their personal convictions.

Deciding with dignity: The account of human dignity as an attitude and its implications for assisted suicide.

Discussions about assisted suicide have hitherto been based on accounts of dignity conceived only as an inherent value or as a status; accounts of dignity in which it appears as a (contingent) attitude, by contrast, have been neglected. Yet there are two good reasons to consider dignity to be an attitude. First, this concept of dignity best allows us to grasp a crucial aspect of everyday language: people often express fears of losing their dignity-and it is not possible to explain this with an account in which dignity is inherent. Second, such a concept allows us to adduce new argumentation where the argument based on status ends. Dignity considered as a status provides grounds to argue for the moral permissibility of assisted suicide, in the sense that in such an account individuals possess the normative power to waive their right to life. But the question then remains of how to decide what counts as a good reason for assisted suicide-and this is where an argument based on dignity as an attitude can provide illumination.

Framework for Patient and Informal Caregiver Participation in Research (PAICPAIR): Part 1.

The term user involvement is frequently applied in research. Frameworks for patient and informal caregiver participation as coresearchers in studies concerning patients with life-threatening illness are however sparse. The PhD project Dying With Dignity-Dignity-Preserving Care for Older Women Living at Home With Incurable Cancer has implemented a thorough cooperation with patients and informal caregivers from the early stages of the research process. A framework for Patient and Informal Caregiver Participation In Research (PAICPAIR) is suggested-creating a stronger foundation for democracy, equality, and research quality by also promoting active participation among vulnerable people experiencing incurable, life-threatening illness, as coresearchers.

[Validity of the concept of human dignity in health care: a literary perspective]. / Vigencia del concepto de dignidad humana en los cuidados de salud: una perspectiva literaria.

In 2003 Ruth Macklin published a short paper questioning the usefulness of the concept ″human dignity. ″ Since then the debate has been kept alive, although in the world of Law, ethics and clinical practice, this concept continues to be used normally. In the spotlight of that criticism was the bioethics of Leon Kass, built on the concept of dignity and sustained in a narrative methodology. In homage to Leon Kass, in this work I approach the concept of dignity from a literary perspective and focusing on nursing health care, in which the usefulness of the concept of human dignity is especially visible.

Current controversies and irresolvable disagreement: the case of Vincent Lambert and the role of 'dissensus'.

Controversial cases in medical ethics are, by their very nature, divisive. There are disagreements that revolve around questions of fact or of value. Ethical debate may help in resolving those disagreements. However, sometimes in such cases, there are opposing reasonable views arising from deep-seated differences in ethical values. It is unclear that agreement and consensus will ever be possible. In this paper, we discuss the recent controversial case of Vincent Lambert, a French man, diagnosed with a vegetative state, for whom there were multiple court hearings over a number of years. Both family and health professionals were divided about whether artificial nutrition and hydration should be withdrawn and Lambert allowed to die. We apply a 'dissensus' approach to his case and argue that the ethical issue most in need of scrutiny (resource allocation) is different from the one that was the focus of attention.

A qualitative study on existential suffering and assisted suicide in Switzerland.

BACKGROUND: In Switzerland, people can be granted access to assisted suicide (AS) on condition that the person whose wish is to die performs the fatal act, that he has his decisional capacity and that the assisting person's conduct is not selfishly motivated. No restrictions relating to the ground of suffering are mentioned in the act. Existential suffering as a reason for wanting to die, however, gives raise to controversial issues. Moreover, existential suffering lacks definition and no consensus exists on how to evaluate and manage it. This study explores the perspectives of care professionals and volunteers from a "right-to-die organization" on existential suffering as a motive for assisted suicide requests. METHODS: A qualitative study based on face-to-face interviews was conducted with twenty-six participants: palliative care and primary care providers as well as EXIT right-to-die organization volunteers. Elements from the grounded theory approach were used. RESULTS: The twenty-six participants described existential suffering in a multiplicity of individual ways. In total, sixty-three stories were recounted. Their representations were grouped into eight categories: physical decline and its consequences, loneliness, fear of the future, life is over, loss of social significance, loss of hope for a better future, being a financial burden and loss of pleasurable activities. According to all participants, suffering coming from the loss of self-identity was always linked to physical decline, as if one's image completely defined someone's identity. Society's perception of old people and vulnerable people were also often questioned. Another interesting point was that only four stories referring to a "pure" existential suffering were found. This suffering was related to a feeling that life has come to an end, without identification of any other related restriction or suffering. CONCLUSIONS: Existential suffering is multifaceted. Legislators and right-to-die organisations have to address the question of what make a AS acceptable. The plurality of existential suffering implies the need of a very personalized care. A better understanding of what it is made of could provide a "toolbox" to people concerned by these requests, helping them to explore it in order to offer suffering people a wider range of alternatives.

Approaches and reflexions on advance healthcare directives in Brazil.

OBJECTIVE: to explain the approaches and discussions about the Advance Healthcare Directives spread among health professionals, lawyers and society. METHOD: bibliographic search in the databases SciELO, LILACS, BDENF, in Portuguese, carried out from December 2017 to January 2018. RESULTS: 22 articles were considered for analysis with interviews and testimonies of physicians, intensivists and geriatricians, nurses, technicians and Nursing auxiliaries, Medical students, lawyers and Law students. CONCLUSION: there is a small number of papers on the Advance Healthcare Directives in Brazil, and a wide range of approaches that have not yet been clarified. The theme is not widely spread and little clarified in its essence.

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.

Approaches and reflexions on advance healthcare directives in Brazil / Enfoques y reflexiones sobre las directivas anticipadas en Brasil / Abordagens e reflexões sobre diretivas antecipadas da vontade no Brasil

ABSTRACT Objective: to explain the approaches and discussions about the Advance Healthcare Directives spread among health professionals, lawyers and society. Method: bibliographic search in the databases SciELO, LILACS, BDENF, in Portuguese, carried out from December 2017 to January 2018. Results: 22 articles were considered for analysis with interviews and testimonies of physicians, intensivists and geriatricians, nurses, technicians and Nursing auxiliaries, Medical students, lawyers and Law students. Conclusion: there is a small number of papers on the Advance Healthcare Directives in Brazil, and a wide range of approaches that have not yet been clarified. The theme is not widely spread and little clarified in its essence.

RESUMEN Objetivo: explicitar los enfoques y discusiones sobre las Directivas Anticipadas difundidas entre los profesionales de la salud, los abogados y la sociedad. Método: investigación bibliográfica realizada en las bases de datos SciELO, LILACS, BDENF, en portugués, del diciembre 2017 hasta enero 2018. Resultados: se consideraron 22 artículos para el análisis con entrevistas y testimonios médicos, intensivistas y geriatras, enfermeros, técnicos y auxiliares de Enfermería, estudiantes de Medicina, de Derecho y abogados. Conclusión: hay un pequeño número de trabajos sobre las Directivas Anticipadas en Brasil, y una amplia gama de enfoques poco elucidados. El tema sigue siendo poco difundido y poco esclarecido en su esencia.

RESUMO Objetivo: explicitar as abordagens e discussões sobre as Diretivas Antecipadas da Vontade difundidas entre os profissionais de saúde, advogados e a sociedade. Método: pesquisa bibliográfica nas bases de dados SciELO, LILACS, BDENF, em Língua Portuguesa, realizada no período de dezembro de 2017 a janeiro de 2018. Resultados: foram considerados 22 artigos para análise com entrevistas e depoimentos de médicos, intensivistas e geriatras, enfermeiros, técnicos e auxiliares de Enfermagem, estudantes de Medicina, de Direito e advogados. Conclusão: há um pequeno número de trabalhos sobre as Diretivas Antecipadas da Vontade no Brasil, e uma ampla gama de abordagens ainda pouco elucidadas. O tema ainda é pouco difundido e pouco esclarecido em sua essência.