From ontological to relational: A scoping review of conceptions of dignity invoked in deliberations on medically assisted death.

BACKGROUND: Dignity is omnipresent in Western ethics, but it also provokes dissension and controversy. One of the most striking examples is the debate on medically assisted death, where dignity is invoked to support antagonistic positions. While some authors conclude that the concept is useless as an ethical reference, many others invite us to deepen our analysis from a multidimensional perspective, to enrich it and make it useful. This scoping study is intended to provide an overview of the different conceptions of dignity used in the assisted dying debate, to better grasp the multiple facets of the concept. METHODS: The Joanna Briggs Institute's JBI Manual for Evidence Synthesis guided the scoping review. Key words were based on the researchers' expertise and were used to identify relevant literature in French and English. Eleven databases covering the last six decades were consulted. Initially, 2,071 references were found in the databases. After excluding duplicates, screening titles, abstracts, and full texts, and after a specific literature search on the concept of relational dignity, 156 papers were found to match the identified inclusion criteria. RESULTS: The literature highlights the stark confrontation between two dominant conceptions of dignity: ontological and autonomist. However, a lesser-known conceptualization of dignity integrates these two perspectives, underlining the relational and social dimensions of dignity. As a result, dignity emerges as a dynamic, experiential, and dialogical concept, that modulates itself according to circumstances. This raises the possibility of breaking through the binary debate and questioning the current frameworks that define dignity. CONCLUSIONS: This multidimensional conceptualization of dignity could lead to a more complete and nuanced understanding of the concept, as well as open richer normative horizons regarding the issue of medically assisted death.

Is it really better to "die" than "live"? Reflections on the practice of "death with dignity" in China.

Aim: To analyze the causes of the controversy caused by "death with dignity" in China, and to provide some useful thoughts for the practical exploration of "death with dignity." Subject and methods: By combing the periodical literature, legal texts and practice, we find that the Medical Regulations of Shenzhen Special Economic Zone, which was revised and passed by China in 2022, recognized the legal effect of "living will" for the first time in legislation, which triggered a wide-ranging social discussion on "death with dignity" and brought many controversies. Results: Due to the influence of traditional culture, policies and laws, medical service supply capacity and other factors, death with dignity suffers from great practical resistance. Conclusion: The exploration of "death with dignity" system needs to start with the problems encountered in practice, focusing on cultivating a good system implementation environment, strengthening the top-level design of "death with dignity" system, and improving the national social security system for hospice care.

Best to possibly not be: A prudential argument for antinatalism.

This article starts by examining the present state of death ethics by attending to the euthanasia debate. Given that voluntary active euthanasia has seen strong support in the academic community, insights on the choiceworthiness of continued existence may be derived. Having derived cases of choiceworthy nonexistence (which I refer to as choiceworthy nonexistence [CNE] cases), I extend these intuitions to lives not worth starting, or choiceworthy nonexistence for potential people (which I refer to as foetal-CNE, or fCNE cases). Although I depart from Benatarian antinatalism by rejecting Benatar's claim that all existence is necessarily a harm, I posit a weaker argument that all existence is likely a harm since we cannot know until later in life if an existence is a harm. If I am right, then we have prudential reasons not to bear children, since they are more likely to suffer in lives not worth living than not.

Análise das informações sobre cuidados paliativos divulgadas na televisão / Analysis of palliative care information broadcasted on television / Análisis de la información sobre cuidados paliativos emitida en televisión

Este estudo de abordagem qualitativa teve como objetivo analisar, a partir do referencial teórico da Análise Institucional, as informações sobre cuidados paliativos veiculadas nos programas da Rede Globo de televisão. A partir da busca no site Globoplay, foram identificados trinta vídeos relacionados ao assunto entre os anos de 2013 e 2020. Entre outros aspectos, foi observado o predomínio de informações divulgadas no mês de outubro, em programas locais da região sudoeste e presença dos profissionais de saúde como a principal fonte de consulta. A televisão se mostrou um importante dispositivo de divulgação de informações sobre cuidados paliativos com os mais variados sentidos, a saber: espiritualidade, alívio da dor e protagonismo dos sujeitos e seus familiares na busca por um processo de morrer com qualidade. Entretanto, nenhum vídeo citou o Sistema Único de Saúde (SUS), o que demonstrou sua invisibilidade nesse meio. Recomenda-se que os meios de comunicação acelerem a divulgação do assunto e que enfatizem o SUS nos conteúdos divulgados.

This qualitative study analyzes the information on palliative care broadcasted by Rede Globo de Televisão's programs based on the theoretical framework of Institutional Analysis. A search on the "Globoplay" website retrieved 30 videos related to the subject between 2013 and 2020. Among other aspects, information was mainly broadcasted in the month of October and in local southwestern programs, having health professionals presented as their main source of information. Television proved to be an important device for disseminating information on palliative care aspects such as spirituality, pain relief and the role of patients and their families in the search for a quality dying process. However, no video mentioned the Unified Health System (SUS), showing its media invisibility. Media conglomerates should increase the dissemination of palliative care information, emphasizing the role played by the SUS.

Este estudio cualitativo tuvo por objetivo analizar, a partir del referencial teórico del Análisis Institucional, las informaciones transmitidas sobre cuidados paliativos en los programas de la Red Globo de Televisión. A partir de la búsqueda en el sitio web Globoplay se identificaron treinta videos relacionados con el tema entre los años 2013 y 2020. Se observó, entre otros aspectos, el predominio de informaciones difundidas en el mes de octubre y en programas locales de la región Suroeste, y los profesionales de la salud se presentaron como la principal fuente de información. La televisión demostró ser un importante dispositivo de difusión de información sobre los cuidados paliativos con los más variados sentidos, como la espiritualidad, el alivio del dolor y el papel de las personas y sus familias en la búsqueda de una muerte digna. Sin embargo, no se mencionó al Sistema Único de Salud (SUS) en ningún video, lo que lo invisibilizó en los medios. Se recomienda que los medios de comunicación avancen en la difusión sobre el tema y que se haga énfasis en el SUS en los contenidos difundidos.

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.

Euthanasia, consensual homicide, and refusal of treatment.

Consensual homicide remains a crime in jurisdictions where active voluntary euthanasia has been legalized. At the same time, both jurisdictions, in which euthanasia is legal and those in which it is not, recognize that all patients (whether severely ill or not) have the right to refuse or withdraw medical treatment (including life-saving treatment). In this paper, I focus on the tensions between these three norms (the permission of active euthanasia, the permission to reject life-saving treatment, and the prohibition of consensual homicide), assuming a justification of euthanasia based on the right to (personal) autonomy. I argue that the best way to provide a coherent account of these norms is to claim that patients have two distinct rights: the right to autonomy and the right to bodily integrity. This solution has some relevant implications for the discussion of the legalization of active euthanasia.

A fase terminal do filho com câncer: percepções dos profissionais hospitalares / The terminal phase of children with cancer: perceptions of hospital professionals / La fase terminal del hijo con cáncer: percepciones de los profesionales del hospital

O confronto com o câncer de um filho e a percepção da sua morte como inevitável dão lugar a experiências parentais relevantes para a pesquisa científica. Este estudo teve como objetivo investigar, por meio da percepção dos profissionais hospitalares, o modo como os pais experienciam a fase terminal e fim de vida do filho com câncer para melhor compreender os processos psicoemocionais experienciados por esses pais diante da cronicidade da doença e da morte do filho. No sentido de alcançar esse objetivo, realizou-se um estudo qualitativo de tipo fenomenológico envolvendo 17 profissionais de dois hospitais portugueses de referência em oncologia pediátrica. Os dados foram recolhidos com recurso a um guia de entrevista semiestruturada. Na percepção dos profissionais hospitalares, os resultados evidenciam que esses pais experienciam múltiplas dificuldades e preocupações na fase terminal da doença do filho e no pós-morte, bem como um sofrimento extremo e desestruturação biopsicossocial e espiritual na família. O conhecimento aprofundado da fenomenologia desses processos é essencial para o desenho e a implementação de intervenções emocionais, cognitivas, comportamentais e sociais mais ajustadas às dificuldades e preocupações parentais vividas no fim de vida e pós-morte.(AU)

Coping with children's cancer and the perception of their inevitable death give rise to parental experiences that are important to study. This study aimed to investigate, based on hospital professionals' perspectives, how parents experience the terminal phase and end of life of their children suffering from cancer to better understand the psycho-emotional processes these parents experienced in face of the chronicity of the disease and their children's death. To achieve this objective, a qualitative phenomenological study was carried out involving 17 professionals of two Portuguese hospitals that are reference in pediatric oncology. Data were collected using a semi-structured interview guide. From the perspective of hospital professionals, results show that these parents experience multiple difficulties and concerns in the terminal phase of their children's disease and postmortem, as well as the extreme suffering and biopsychosocial and spiritual disruption of the family. A deeper understanding of the phenomenology of these processes is essential to design and implement better adjusted emotional, cognitive, behavioral, and social interventions aimed at the parental difficulties and concerns experienced at the end of life and after death.(AU)

El enfrentamiento del cáncer de un hijo y la percepción de su muerte como inevitable dan lugar a experiencias parentales importantes que deben ser estudiadas. Este estudio pretende identificar desde la percepción de los profesionales del hospital cómo los padres viven la fase terminal y el final de la vida de su hijo con cáncer con el fin de comprender mejor los procesos psicoemocionales que viven estos padres ante la cronicidad de la enfermedad y la muerte de su hijo. Para ello, se realizó un estudio cualitativo, con enfoque fenomenológico, en el que participaron 17 profesionales de dos hospitales portugueses de referencia en oncología pediátrica. Para recoger los datos se aplicó un guion de entrevista semiestructurada. En cuanto a la percepción de los profesionales del hospital, estos padres experimentaron múltiples dificultades y preocupaciones en la fase terminal de la enfermedad de su hijo y postmuerte, así como un sufrimiento extremo y una desestructuración biopsicosocial y espiritual en la familia. El conocimiento en profundidad de la fenomenología de estos procesos es esencial para elaborar e implementar intervenciones emocionales, cognitivas, conductuales y sociales más acordes a las dificultades y preocupaciones parentales que se experimentan al final de la vida y la postmuerte.(AU)

Morte digna como direito: visibilidade jurídica da finitude / Dignified death as a right: the legal visibility of finitude / La muerte digna como derecho: visibilidad jurídica de la finitud

Resumo O direito à morte digna é majoritariamente ignorado pelo ordenamento brasileiro. Essa invisibilidade do processo de finitude e suas consequências são tema deste estudo, que objetiva realizar um levantamento exploratório para identificar pontos relevantes que devem ser desenvolvidos para garantir um processo de finitude digno. Foram analisadas 50 publicações, mediante levantamento online e físico de obras publicadas até março de 2023. Os estudos analisados expressam preocupação com dilemas éticos do cuidar do ser humano em finitude, mas não analisam formas existentes de tutela da finitude nem quais searas ainda são carentes de normatização para dar eficácia a esse cuidado. Espera-se que esta pesquisa contribua para fortalecer o olhar crítico ao tema, considerando as atuais tutelas da finitude, os limites legais do Estado e os potenciais passos futuros para fazer avançar os estudos aplicados à atualização prática do ordenamento brasileiro.

Abstract The right to a dignified death is largely overlooked by Brazilian law. This neglect of the end-of-life process and its ramifications is the focus of this study, which aims at an exploratory survey to identify pertinent aspects requiring development to ensure a dignified end-of-life experience. In total, 50 publications were examined with online and physical surveys of works published up to March 2023. They express concerns regarding ethical dilemmas in caring for individuals nearing the end of life, yet they do not delve into existing mechanisms for safeguarding end-of-life dignity or identify areas that still lack standardization to ensure effective care. This study should contribute to the enhancement of critical perspectives on the issue of end-of-life experiences, considering current safeguards, the legal boundaries set by the State, and potential future strides toward advancing studies aimed at the practical update of the Brazilian legal system.

Resumen El derecho a una muerte digna es ampliamente ignorado por el ordenamiento jurídico brasileño. Esta invisibilidad del proceso de finitud y sus consecuencias son el objeto de este estudio, que tiene como objetivo realizar una encuesta exploratoria para identificar los puntos relevantes que deben desarrollarse para garantizar un proceso de finitud digno. Se analizaron 50 publicaciones a través de una encuesta online y física de obras publicadas hasta marzo de 2023. Los estudios analizados expresan preocupación por los dilemas éticos de la atención a seres humanos en finitud, pero no analizan las formas de protección a la finitud existentes ni cuáles son las áreas que aún necesitan regulación para hacer efectiva esta atención. Se espera que esta investigación contribuya a fortalecer la visión crítica de la finitud, considerando la protección actual de la finitud, los límites jurídicos del Estado y los posibles pasos futuros para avanzar en los estudios aplicados a la actualización práctica del sistema jurídico brasileño.

Old Books, Warm Cookies, and Death With Dignity.

Family medicine physicians take care of patients and their families "from womb to tomb." This phrase is particularly apt in Oregon, where the Death with Dignity Act allows for terminally ill patients to end their lives with self-administered medications prescribed by a physician. This story chronicles my first experience caring for a patient under the Death with Dignity Act; that night of her death at home, surrounded by the warmth of her life and loved ones, opened my mind to the possibilities of what the patient-physician relationship entails, from the routine of meeting her family to the intimacy of assisting in her decision to die.

Cruzan after Dobbs: What Remains of the Constitutional Right to Refuse Treatment?

In 2022, the U.S. Supreme Court removed constitutional protection from the individual's right to end a pregnancy. In Dobbs v. Jackson Women's Health Organization, the Court invalidated previous rulings protecting that right as part of the individual liberty and privacy interests embedded in the U.S. Constitution. Now, many observers are speculating about the fate of other rights founded on those interests. The Dobbs ruling conflicts with the Court's 1990 Cruzan decision restricting the government's power to interfere with personal medical choices. The language and reasoning in Dobbs and Cruzan offer guidance on how the Court might address future cases involving the right to refuse life-sustaining treatment. The decisions also point to policy strategies for preserving that right.

En busca del buen morir / In search of a good death

La muerte siempre ha generado desconcierto, por lo que acompañar en este proceso de final de vida conlleva un alto compromiso existencial. Si a esta difícil tarea se le agregan los condicionantes hospitalarios o legales que sufren los enfermos en su agonía, estamos ante una muerte aterradora, muy distante de una partida que pueda ser considerada amorosa. Como sabemos, la palabra "clínica" hace referencia a la práctica de atender al pie de la cama del paciente, aliviando el dolor del que está por partir; sin embargo, el "corsé legal" de la muerte está alejando al médico de aquel que debiera recibir toda su atención y sus cuidados, atándole el brazo para acompañarlo en el buen morir. Deberíamos debatir y acordar una estrategia que enriquezca la experiencia del momento final de la vida, de modo que ese conjunto acotado de pacientes pueda elegir su forma de partir. Es de un valor incalculable despertar la compasión en este tema tan importante que preocupa al ser humano desde los inicios de la civilización. Sería muy fructífero que aprovechemos la transmisión de sabiduría de siglos de antiguas culturas que han sabido cuidar con humildad la vida hasta el instante de morir. (AU)

Death has always implied confusion, so accompanying this end-of-life process entails a highexistential commitment. If we add to this difficult task the hospital or legal constraints suffered bypatients in their agony, we are facing a terrifying death, very far from a departure that can be considered a loving one. As we know, the word "clinical" refers to the practice of caring for the patient very close to the bed, alleviating the pain of whom is about to leave; however, the "legal corset" of death is separating the doctor from the one who should receive all his attention and care, preventing him from accompanying the pacient in his/her good dying. We should discuss and agree on a strategy that enriches the experience of the end of life, so that patients could choose the way to leave. It is of incalculable value to awaken compassion on this important issue that has concerned human since the beggining of civilization. It would be very fruitful if we take advantage of the enormous wisdom of ancient cultures that have humbly cared for life until the moment of death. (AU)

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.

Diretivas antecipadas da vontade: autonomia do paciente e segurança profissional / Advance directives: patient autonomy and professional safety / Directivas anticipadas de voluntad: autonomía del paciente y seguridad profesional

Resumo Este estudo teórico discorre sobre a bioética no sentido de promover e assegurar a dignidade do paciente de uma forma segura, que obedeça a sua tomada de decisão, seguindo normativas e protocolos que garantam o cumprimento dessa vontade, e trazendo também segurança para equipe assistencial. A ausência de consenso no meio jurídico, por falta de regulamentações que explicitem as regras para a elaboração de um modelo de diretivas de vontade, gera insegurança nos profissionais de saúde envolvidos, familiares e paciente. Para garantir esse direito, além da normatização jurídica, é necessário que os profissionais tenham pleno conhecimento do assunto, a fim de orientar e informar corretamente seus pacientes. Não basta assegurar ao indivíduo o direito de manifestar sua vontade, é preciso ainda a certeza de que esta será cumprida. Há a necessidade de ampliar discussões acerca da temática, com ênfase na realidade brasileira.

Abstract This theoretical study discusses bioethics in the sense of safely promoting and ensuring the patients' dignity, respectful of their decision making, following regulations and protocols that help fulfill this will and bring safety to the care team. The lack of clear and consensual legal regulations on how to elaborate an advance directive generates uncertainty among healthcare providers, patients and their families. Beyond legal standardization, professionals must also have full knowledge on the topic to correctly guide and inform their patients, thus guaranteeing this right. But ensuring the right to express one's will is not enough—one must be assured that such whishes will be fulfilled. Further and broader discussions on this topic anchored on the Brazilian reality are needed.

Resumen Este estudio teórico trata la bioética en el sentido de promover y garantizar la dignidad del paciente de forma segura, que acepte su toma de decisiones, siguiendo normas y protocolos que garanticen el cumplimiento de esa voluntad, además de brindar seguridad al equipo de atención. La falta de consenso en el ámbito legal respecto a normativa para la elaboración de un modelo de directivas de voluntad produce inseguridad en los profesionales de la salud involucrados, familiares y pacientes. La garantía de este derecho, además de la regulación legal, requiere que los profesionales conozcan el tema para orientar e informar correctamente a sus pacientes. No basta con garantizar al individuo el derecho a expresar su voluntad, sino que también es necesario la certeza de que esta se cumplirá. Son necesarios más estudios para ampliar las discusiones sobre el tema, con énfasis en el contexto brasileño.