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.

Os tênues limites entre o direito de viver e o direito de morrer: a perspectiva acadêmica, jurídica e bioética dos cuidados paliativos em animais de estimação / Els tènues límits entre el dret a viure i el dret a morir: la perspectiva acadèmica, legal i bioètica de les cures pal·liatives per a animal de compañía / Los tenues límites entre el derecho a vivir y el derecho a morir: la perspectiva académica, legal y bioética de los cuidados paliativos para animal de compañía / The tenuous limits between the right to live and the right to die: an academic, legal, and bioethics perspective of palliative care in pets

Os cuidados paliativos (CP) de animais de estimação constituem um tema emergente na Medicina Veterinária se caracterizando como uma alternativa terapêutica para a eutanásia precoce. Objetivou-se mapear a perspectiva, critérios, procedimentos e referenciais éticos e científicos dos CP e da eutanásia em animais de estimação, testando a hipótese de diferenças nas perspectivas da eutanásia e dos CP, bem como entre os cenários nacional e internacional. Para tal, realizou-se uma revisão bibliográfica integrativa da produção científica e um recorte de análise jurisprudencial a respeito dos reflexos jurídicos na atividade médico-veterinária. A revisão integrativa resultou em 535 artigos, dos quais 43 atenderam aos critérios de inclusão, acrescida de 800 ementas, as quais 30% foram relativas a ações indenizatórias contra serviços e médicos veterinários. Os dados obtidos, sob o recorte proposto na pesquisa, permitiram caracterizar a abordagem científica dos CP e da eutanásia, bem como lançar trilhas interpretativas de como os aspectos funcionais e perspectivas de aplicação podem subsidiar as decisões da equipe médica veterinária e dos responsáveis pelos animais. Contudo, para superação das limitações e a consolidação das potencialidades dos CP se faz necessário um esforço multidimensional, incluindo a esfera normativa, técnica, social e ética.Vislumbra-se o acolhimento da questão nas pautas da Bioética sugerindo que seja performada no espaço multidisciplinar do Comitê de Bioética Hospitalar Veterinário, com intuito de auxiliar na deliberação de decisões conflituosas, considerando o direito de proporcionar uma vida digna ao animal e, consequentemente, mitigando vulnerabilidades comprometedoras do direito de viver e de morrer.(AU)

Los cuidados paliativos (CP) de las mascotas es un tema emergente en medicina veterinaria que constituye una alternativa terapéutica para la eutanasia temprana. Nuestro objetivo fue avaluar la perspectiva, los criterios, los procedimientos y las referencias éticas y científicas de los CP y la eutanasia en las mascotas, probando la hipótesis de las diferencias en las perspectivas de la eutanasia y los CP, así como entre los escenarios nacionales e internacionales. Con este fin, se realizó una revisión bibliográfica integradora de la producción científica y un recorte del análisis jurisprudencial de los reflejos legales en la actividad médica veterinaria. La revisión integradora dio como resultado 535 artículos, delos cuales 43 cumplieron con los criterios de inclusión, más 800 resúmenes de procesos, que el 30% estaban relacionados con acciones de indemnización contra servicios veterinarios y médicos. Los datos obtenidos, bajo el recorte propuesto en la investigación, se permiten caracterizar el enfoque científico de CP y eutanasia, así como lanzar senderos interpretativos de cómo los aspectos funcionales y las perspectivas de aplicación pueden subsidiar las decisiones del equipo médico veterinario y aquellos responsables de animales. Sin embargo, para superar las limitaciones y la consolidación de las potencialidades de CP, se requiere un esfuerzo multidimensional que incluya la esfera normativa, técnica, social y ética. Se vislumbra la recepción del problema en la agenda de la bioética, lo que sugiere que se realiza en el espacio multidisciplinario del Comité de Bioética del Hospital Veterinario para ayudar en la deliberación de las decisiones de conflicto considerando el derecho a proporcionar una vida digna al animal y, en consecuencia, mitigando las vulnerabilidades comprometedoras del derecho a vivir y morir.(AU)

Palliative care (PC) of pets is an emerging theme in veterinary medicine constituting a therapeutic alternative for early euthanasia. Our objective was to map of the perspective, criteria, procedures and ethical and scientific references of PC and euthanasia in pets, testing the hypothesis of differences in the perspectives of euthanasia and PC, as well as between the national and international scenarios. Thus, an integrative bibliographic review of scientific production and a cut of jurisprudential analysis of legal reflexes in veterinary medical activity was performed. The integrative review resulted in 535 articles, of which 43 complied with the inclusion criteria, agree with 800 actions, which 30% were related to indemnity actions against veterinary services. The data obtained,under the profile proposed in the research, allowed to characterize the scientific approach of PC and euthanasia, as well as launch interpretative trails of how functional aspects and prospects of application can subsidize the decisions of the veterinary medical team and those responsible for animals. However, to overcome the limitations and the consolidation of PC potentialities, a multidimensional effort is required including the normative, technical, social and ethical sphere. We discern the reception of the issue in the agenda of bioethics suggesting that it is performed in the multidisciplinary space of the veterinary hospital bioethics committee to assist in the deliberation of conflict decisions considering the right to provide a dignified life to the animal, and consequently, mitigating compromising vulnerabilities of the right to live and die.(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.

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.

Percepción familiar sobre la ortotanasia y distanasia en cuidadores de pacientes oncológicos / Family perception of orthothanasia and distanasia in caregivers of cancer patient

En la atención al paciente en estadío terminal de causa oncológica, un tema que cobra importancia es la percepción sobre la distanasia y ortotanasia en los cuidadores como alternativa sentida al final de la vida. El objetivo de la investigación fue caracterizar la percepción familiar de los cuidadores de los enfermos terminales sobre la distanasia y la ortotanasia como alternativa sentida al final de la vida en la Policlínica Universitaria Ángel Ortíz Vázquez. Se realizó un estudio cuantitativo-cualitativo. La muestra quedó conformada por 6 cuidadores. Se estudiaron las variables conocimiento real y referido en relación con enfermo terminal y enfermedad terminal, así como la ortotanasia y distanasia, la percepción familiar sobre la ortotanasia y distanasia y la elección de alternativa sentida al final de la vida. En el proceso investigativo se emplearon una encuesta, la entrevista, la entrevista en profundidad y la composición. El análisis de los datos se articula a través de la asunción de la triangulación como estrategia metodológica. Emergió que el 83,3 por ciento de los cuidadores refirieron como alternativa sentida de elección al final de vida la ortotanasia. Mostraron insuficientes conocimientos en relación con los conceptos enfermo terminal-enfermedad terminal y ortotanasia-distanasia en ambas técnicas. La percepción familiar es de aceptación. La percepción familiar de los cuidadores sobre la distanasia-ortotanasia es de aceptación, con actitudes positivas y la elección de la ortotanasia como alternativa sentida al final de la vida para el sujeto, pues consideran que la misma es la mejor opción para disminuir el sufrimiento(AU)

In the care of patients in the terminal stage of oncological causes, an issue that gains importance is the perception of distanasia and orthothanasia in caregivers as an alternative felt at the end of life. The objective of the research was to characterize the family perception of the caregivers of the terminally ill about distanasia and orthothanasia as an alternative felt at the end of life at the Ángel Ortíz Vázquez University Polyclinic. A quantitative-qualitative study was carried out. The sample was made up of 6 caregivers. The variables real and referred knowledge in relation to terminally ill and terminally ill were studied, as well as orthothanasia and distanasia, family perception of orthothanasia and distanasia and the choice of alternative felt at the end of life. In the investigative process, a survey, the interview, the in-depth interview and the composition were used. The data analysis is articulated through the assumption of triangulation as a methodological strategy. It emerged that 83.3 percent of the caregivers referred to orthothanasia as a felt alternative of choice at the end of life. They showed insufficient knowledge in relation to the terminally ill-terminally ill and orthothanasia-distanasia concepts in both techniques. The familiar perception is one of acceptance. The family perception of caregivers about distanasia-orthothanasia is one of acceptance, with positive attitudes and the choice of orthothanasia as an alternative felt at the end of life for the subject, since they consider that it is the best option to reduce suffering(EU)

Humanizar la muerte en tiempos de crisis sanitaria: morir acompañado, despedirse y recibir atención espiritual / Humanize death in a time of sanitary crisis: accompanied die, farewell and receive spiritual care

La crisis del sistema sanitario originada por el COVID-19 ha dejado al descubierto algunos déficits humanitarios importantes sobre el modo de atender a los enfermos en sus últimos días de vida. La humanización del proceso de morir se ha visto afectada en tres aspectos fundamentales cada uno de los cuales constituye un deber médico y ético indeclinable. En este estudio analizo las razones por la que morir acompañado, con la posibilidad de despedirse y recibiendo asistencia espiritual, conforman un triada especifica de cui-dados y de obligaciones naturales que no deberían soslayarse –tampoco en tiempo de crisis sanitaria– si no queremos ver vulnerada la dignidad humana y violados algunos derechos fundamentales derivados de ella

The crisis in the health system caused by COVID-19 has left some important humanitarian deficits on how to care for the sick in their last days of life. The humanization of the dying process has been affected in three fundamental aspects, each of which constitutes a medical and ethical duty necessary. In this study, I analyze why dying accompanied, with the possibility of saying goodbye and receiving spiritual assistance, constitutes a specific triad of care and natural obligations that should not be overlooked - even in times of health crisis - if we do not want to see human dignity violated and violated some fundamental rights derived from it

A morte como o melhor interesse da criança: uma proposta a partir dos casos Charlie Gard e Alfie Evans / La muerte como el mejor interés del niño: una propuesta a partir de los casos Charlie Gard y Alfie Evans / Death as the best interest of the child: A proposal from Charlie Gard and Alfie Evans cases / La mort com el millor interès del nen: una proposta a partir dels casos Charlie Gard i Alfie Evans

Os recentes casos envolvendo a morte de crianças em razão da suspensão do suporte vital, mesmo com a oposição dos pais, demonstram a necessidade de um debate transdisciplinar sobre o conteúdo do princípio do melhor interesse da criança e a extensão dos poderes-deveres decorrentes da autoridade parental. Poderia a morte, em determinadas situações, representar o melhor interesse da criança? Partindo dos casos de Charlie Gard e Alfie Evans, este artigo tem por objetivo a busca de parâmetros para a tomada de decisões voltadas à terminalidade da vida infantil. Por meio de uma revisão bibliográfica interdisciplinar, buscam-se fundamentos para confirmar ou refutar a hipótese de que a morte pode ser configurada como o melhor interesse da criança em contextos específicos

Los recientes casos que involucran la muerte de niños en razón de la suspensión del soporte vital, incluso con la incisiva oposición de los padres, demuestran la necesidad de un debate transdisciplinario sobre el contenido del principio del mejor interés del niño y la extensión de los poderes-deberes derivados de la autoridad parental. ¿Podría la muerte, en determinadas situaciones, representar el mejor interés del niño? A partir de los casos Charlie Gard y Alfie Evans, este artículo objetiva la búsqueda de parámetros para la toma de decisiones dirigidas a la terminalidad de la vida infantil. Por medio de una revisión bibliográfica interdisciplinaria, se buscan fundamentos para confirmar o refutar la hipótesis de que la muerte puede ser configurada como el mejor interés del niño en contextos específicos

The recent cases involving the death of children due to the suspension of life support, even with the strong opposition of their parents, demonstrate the need for a transdisciplinary debate on the content of the principle of the best interests of the child and the extension of the powers-duties arising from the parental authority. Could death, in certain situations, represent the best interest of the child? Based on the cases of Charlie Gard and Alfie Evans, this article aims to search for parameters for the decision-making in situations of terminally ill infants. Through an interdisciplinary bibliographical review, it is sought the confirmation or refutation of the hypothesis that death can be configured as the best interest of the child in specific contexts

Els recents casos que involucren la mort de nens a causa de la suspensió del suport vital, fins i tot amb l'enèrgica oposició dels pares, demostren la necessitat d'un debat transdisciplinar sobre el contingut del principi del millor interès del nen i l'extensió dels poders-deures derivats de l'autoritat parental. Podria la mort, en determinades situacions, suposar el millor interès del nen? A partir dels casos Charlie Gard i Alfie Evans, aquest article objectiva la recerca de paràmetres per a la presa de decisions dirigides al final de vida infantil. Per mitjà d'una revisió bibliogràfica interdisciplinària, es pretèn confirmar o refutar la hipòtesi que la mort pot ser configurada com el millor interès del nen en contextos específics

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.