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.

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.

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.

Voluntary Stopping Eating and Drinking.

Voluntary stopping of eating and drinking (VSED) is a deliberate, self-initiated attempt to hasten death in the setting of suffering refractory to optimal palliative interventions or prolonged dying that a person finds intolerable. Individuals who consider VSED tend to be older, have a serious but not always imminently terminal illness, place a high value on independence, and have significant illness burden. VSED can theoretically be performed independent of clinician assistance and therefore avoids many of the ethical and legal concerns associated with physician-assisted dying or other palliative measures of last resort, However, VSED is an intense process fraught with new sources of somatic and emotional suffering for individuals and their caregivers, so VSED is best supervised by an experienced, well-informed clinician who can provide appropriate pre-intervention assessment, anticipatory guidance, medical treatment of symptoms, and emotional support. Before initiation of VSED, clinicians should carefully screen for inadequately treated psychiatric conditions, unaddressed symptoms, existential suffering, and evidence of coercion-consultation from palliative medicine, psychiatry, or ethics is often indicated. The most common symptoms encountered after starting VSED are extreme thirst, hunger, dysuria, progressive disability, delirium, and somnolence. Although physiologically similar to cessation of artificial nutrition and hydration, the onset and management of symptoms is often different. We propose an organized system for evaluating individual appropriateness for VSED, anticipatory guidance, and management of symptoms associated with VSED. A brief review of ethical and legal considerations follows.

'To die with dignity': an update on Palliative Care.

Significant developments have occurred in the discipline of palliative care in the modern era. This paper shall explore those developments, challenge some widely held misconceptions about the role and daily practice of the discipline, highlight the growing recognition of the role of palliative care in non-malignant diseases, briefly discuss innovations in symptom management and reflect on the underlying principles, maturation and challenges faced by the discipline.

End of Life Issues in Cancer Cases: Ethical Aspects.

This article investigates ethical challenges cancer patients face in the end stages of life including doctors' responsibilities, patients' rights, unexpected desires of patients and their relatives, futile treatments, and communication with patients in end stages of life. These patients are taken care of through palliative rather than curative measures. In many cases, patients in the last days of life ask their physician to terminate their illness via euthanasia which has many ethical considerations. Proponents of such mercy killing (euthanasia) believe that if the patient desires, the physician must end the life, while opponents of this issue, consider it as an act of murder incompatible with the spirit of medical sciences. The related arguments presented in this paper and other ethical issues these patients face and possible solutions for dealing with them have been proposed. It should be mentioned that this paper is more human rational and empirical and the views of the legislator are not included, though in many cases human intellectual and empirical comments are compatible with those of the legislator.

["I want to die" ­ dealing with suicidal wishes in primary palliative care]. / "Ich möchte sterben" - Zum Umgang mit Suizidwünschen in der hausärztlichen Palliativbetreuung.

Different attitudes towards, and ideas about the end of life, represent an often experienced challenge in palliative care provided by family doctors. If values diverge too strongly, considerable strain can originate from it for the health care professionals, in particular if it is about assisted suicide. How do family doctors experience the incompatibility between patients' wishes and personal values? How do they succeed to bridge value divergences? Based on group discussions with family doctors in Switzerland the contribution focusses on these questions and identifies different strategies of family doctors. The results indicate that in particular 'convergence of perspectives' with patients can reduce the strain for family doctors and can at the same time guarantee high quality of care.

["Good dying"--definition and current state of research]. / Was ist "gutes Sterben"? Begriffsklärung und Stand der Forschung.

The advances of modern medicine did not only result in prolongation of life expectancy, but also led to a shift from dying at home to dying in public institutions. In western countries most people die at advanced age in medical facilities. Hence, the question regarding the conditions, which should be provided by society and especially medicine, to allow terminally ill people to experience "good dying" is substantial. For this purpose, an examination of patients', family members' and health care providers' understanding of the term " good dying" is required. The present paper aims at shedding light on the term "good dying" and to summarize the current state of research. Therefore, the attributes of "good dying" will be described from the perspectives of patients, family members and health care providers, which are discussed and examined in current medical-sociological research. These attributes can be illustrated on three dimensions: Quality of life at the end of life (e. g. pain relief, mental well-being), quality of dying (e. g. avoiding prolonged dying, autonomy, presence of relatives) and quality of health care at the end of life (e. g. patient-oriented health care, positive communication between health care providers and patients, availability of guidelines). Although the attributes of "good dying" are described in detail in the existing literature, further studies have to clarify the relevance and impact of these attributes as predictors of "good dying".