Thesis (M.S.)--University of Michigan, 1996. / Includes bibliographical references.

Orientador: Edison Iglesias de Oliveira Vidal / Resumo: No Brasil atual a maior parte dos profissionais e instituições de saúde ainda se encontram longe de constituírem uma rotina de discussão sobre preferências de cuidados no fim da vida junto a pacientes com prognóstico reservado. Esta corresponde a uma grande lacuna na atenção à saúde em nosso país, a qual frequentemente se associa a sofrimento evitável de pacientes e familiares. Em 1991 nos EUA foi iniciado um programa de discussão de preferências de cuidados no fim da vida denominado POLST (Physician Orders for Life-Sustaining Treatment). Trata-se de um sistema coordenado para evocar, documentar e comunicar as preferências de pacientes/familiares quanto a tratamentos prolongadores da vida para enfermos com expectativa de vida reduzida. Atualmente o POLST representa uma das melhor sucedidas estratégias para a elicitação e documentação de preferências de cuidados no fim da vida naquele país. O objetivo dessa pesquisa foi realizar a Adaptação Transcultural (ATC) do formulário POLST para o contexto brasileiro. A metodologia de ATC baseou-se nas recomendações da International Society for Pharmacoeconomics and Outcomes Research. Foram realizadas 3 traduções diretas e independentes do instrumento fonte para o português, as quais passaram por uma reunião de reconciliação de forma a gerar uma versão síntese. Essa versão foi submetida a duas traduções reversas para o inglês e posteriormente foi realizado um teste piloto do formulário com 20 médicos e 10 pacientes. Versões do instrument... (Resumo completo, clicar acesso eletrônico abaixo) / Abstract: In Brazil most health care professionals and institutions still have not included discussions about preferences of care at the end of life with patients with decreased life expectancy as part of their daily routine. This represents a major gap for the care at the close of life in Brazil that is frequently associated with avoidable suffering of patients and their loved ones. In 1991 the Physician Orders for Life-Sustaining Treatment (POLST) program was started in the USA. It embodies a coordinated system to elicit, record and communicate patients’ and families’ preferences about life-prolonging treatments for individuals with decreased life expectancy across a variety of health care settings. The POLST paradigm has spread across the USA and currently represents one of the most successful strategies to elicit and record preferences of care at the end of life in that country. The present research aimed to conduct the Cross-Cultural Adaptation (CCA) of the POLST form to the Brazilian context. The cross-cultural adaptation methodology was based on the principles of good practice for the translation and cultural adaptation process recommended by the International Society for Pharmacoeconomics and Outcomes Research. Three independent direct translations of the source instrument to Portuguese were performed. Those translations were synthesized into a single version after a reconciliation meeting. Two independent native English speakers performed 2 back translations of that version in... (Complete abstract click electronic access below) / Mestre

Este trabalho volta-se ao estudo das diretivas antecipadas sobre o fim da vida na relação médica no Brasil. Pretende-se verificar a legitimidade bioética e a legitimidade e possibilidade jurídicas da prática das diretivas antecipadas sobre o fim da vida como objetivo central. Busca-se aferir a adequação, bioética e jurídica, das diretivas antecipadas como veículo próprio de autodeterminação da pessoa diante de suas possibilidades existenciais e da formulação de seu projeto de vida e de morte digna. Ademais, especificamente, procura-se determinar a possibilidade jurídica das diretivas antecipadas no Ordenamento brasileiro: a coerência com as garantias constitucionais e a existência de institutos aptos a tal prática. Propõe-se sustentar a legitimação jurídica das diretivas antecipadas no Brasil, indicando possíveis caminhos às soluções interpretativas no plano jurídico, e os efeitos na relação médica a partir, também, das considerações bioéticas. Com essa finalidade, pretende-se averiguar a compatibilidade entre as normas deontológicas de origem bioética e as normas jurídicas de status constitucional de proteção à pessoa humana. A tese também propõe a análise do contexto em que as diretivas antecipadas são utilizadas para (i) problematizar as ideias de capacidade e competência para a prática desse ato de autonomia pessoal, (ii) problematizar sobre como a perspectiva familiar, a perspectiva técnica dos profissionais da saúde e a perspectiva do Poder Judiciário contingenciam a liberdade desse ato e (iii) aferir a eficácia desses atos no espaço clínico e familiar. Para tanto, será empreendido estudo teórico mediante pesquisa bibliográfica e de referências, que levantará as publicações, nacionais e internacionais, sobre os temas da tese. O levantamento bibliográfico compreenderá, preferencialmente, obras sobre filosofia, ética, bioética e direito, que permitam a análise das questões teóricas envolvidas no estudo. O desenvolvimento do trabalho estrutura-se em três capítulos. O primeiro pretende estabelecer as bases conceituais e os fundamentos legais das diretivas antecipadas. O segundo capítulo apresentará a sistematização entre os valores bioéticos e jurídicos que se relacionam a tal prática. O capítulo três apresentará as questões fundamentais pertinentes à validade e eficácia da prática das diretivas antecipadas no Brasil. A partir das premissas construídas ao longo do desenvolvimento, o desfecho da pesquisa pretende reforçar seu argumento central demonstrando, então, a legitimação bioética e a legitimidade e a possibilidade jurídicas das diretivas antecipadas sobre o fim da vida no atual contexto brasileiro.

As diretivas antecipadas de vontade para o fim da vida são documentos que expressam os desejos da pessoa relacionados aos procedimentos que podem ser aplicados a ela em uma situação de assistência médica no fim da vida. Nesse sentido, as diretivas são úteis para informar as equipes de assistência médica a respeito dos tipos específicos de tratamento que o paciente permite, ou não permite, quando não estiver apto a manifestar suas vontades em uma hipotética situação futura de incapacidade. Este tipo de documento foi elaborado nos Estados Unidos na década de 1970, e foi introduzido no ordenamento ético brasileiro pela Resolução 1995/2012 do Conselho Federal de Medicina. O objetivo desta dissertação é estudar essa norma ética sob o enfoque do direito penal, uma vez que as diretivas antecipadas de vontade para o fim da vida possuem uma íntima relação com a ortotanásia e a eutanásia, que são passíveis de sanção penal no Brasil. Assim, é fundamental analisar as diretivas antecipadas utilizando as ferramentas da doutrina penal, e princípios como os da dignidade humana e razoabilidade. O objetivo é pesquisar as qualidades, imperfeições e limites das diretivas antecipadas sob o ordenamento jurídico nacional, e também compreender as bases legais das diretivas antecipadas, que são os institutos da autonomia e do consentimento. Concluímos que, ainda que as diretivas antecipadas de vontade sejam uma norma ética bem-vinda, demandam algumas melhorias e refinamentos, que poderiam ser representados pelos planejamentos antecipados de tratamentos, um tipo de documento direcionado aos valores de vida das pessoas. Além disso, uma mudança de paradigma relacionada à eutanásia, particularmente a eutanásia passiva e a ortotanásia, no sentido de descriminalizá-las, seria importante para que as diretivas antecipadas tenham eficácia no Brasil. / Advance directives for dying patients are documents which express personal desires related to procedures that may be applied to people in a situation of medical assistance in the end of life. In this sense, they are useful to make health assistance teams know about what kind of specific treatment the patients permit, or do not permit, when they are not able to communicate their wishes in a hypothetical and future situation of disability. This kind of document was created in the United States in the seventies, and entered Brazilian ethical law by Resolution 1995/2012 of the Federal Council of Medicine. The aim of this dissertation is to study this ethical rule by means of the criminal law, because advance directives have a close relation to euthanasia and ortothanasia, which are prone to criminal sanction in Brazil. Therefore, it is paramount to analyze the advance directives using the doctrinal tools of criminal law and principles like human dignity and reasonability. The goal is surveying the qualities, inadequacies and limits of advance directives under Brazilian law, and also to understand the legal basis of the advance directives, which are the institutes of autonomy and consent. We concluded that, although advance directives for dying patients are a welcome ethical law, it demands some improvement and refinement, which could be represented by the advance care planning, a kind of document that is focused on the life values of people. Furthermore, a change of paradigm related to euthanasia, particularly passive euthanasia and ortothanasia, in the direction of making them apart of criminalization, would be vital to promote the adequate efficacy of the advance directives in Brazil.

This thesis investigates the legal validity of living wills (advance directives) in South Africa. The study explores the current status of living wills in South Africa and contains recommendations on how legal enforceability of living wills can be improved in the South African context. The Constitution of the Republic of South Africa, 1996, the common law and the National Health Act, 61 of 2003, serve as basic points of departure for this investigation. Shortcomings in the current South African legislation and proposed draft legislation including the Law Commission’s Draft Bill on End of Life Decisions, 1998, and The National Health Amendment Bill, 2019, as well as shortcomings in the common law, the field of medical ethics and medical practice are indicated and recommendations for an improved framework are made. For purposes of a legal comparative methodology, the legal frameworks of living wills in the Netherlands, England and Canada are investigated. Specific circumstances which could potentially hamper the legal enforcement of living wills are discussed, including: emergency situations, do-not-resuscitate orders, permanent vegetative states, dementia, cessation of artificial hydration and feeding, pregnancy, euthanasia, assisted suicide, palliative care, pain relief and organ donation. It is argued that a living will could be an important tool in enhancing the doctor-patient relationship, not only to the benefit of the autonomous patient whose dignity and other fundamental human rights should be protected, but also to the benefit of the doctor as the medical care provider. / Thesis (LLD)--University of Pretoria, 2019. / Public Law / LLD / Unrestricted

Background: Advance directives allow patients to put in writing the type of health care they want if they are unable to make decisions due to their medical condition. Purpose: The purpose of this study was to determine if there were differences in senior nursing students’ knowledge, attitudes, and confidence based on when the information is positioned in the curriculum. Theoretical: Social cognitive learning theory and Zimmerman’s self-regulation model provided the theoretical framework. Methods: This study reflected a non-experimental, exploratory design, with a convenience sample of senior nursing students from 2 different nursing programs in central Illinois. One program offers advance directive education in the first year and the other program offers the information in the second year. A total of 131 students participated in the study that used subscales of the Knowledge, Attitudinal, Experiential Survey on Advance Directives. Results: The group that received the information the second year rated themselves as having more confidence with advance directives. However, both groups scored low in the area of knowledge of advance directives, the Patient Self-Determination Act, and Illinois law. Students who reported higher knowledge levels had higher attitudes about end-of-life care. There was no difference in attitudes between the two groups. Conclusion: The results of this study highlight the need to review nursing curricula specifically relating to end-of-life care content and its placement in the curriculum.

No description available.

As a healthcare professional at the bedside, it has been very difficult to advocate for the patient while all parties involved cannot respect what the patient wants. Four out of five Americans do not have an advance directive. The history and court cases that have led the country to make patient’s right to make their own healthcare decisions has been decades in the making, yet still bring daily challenges within the healthcare system. When a patient’s wishes are not being honored, medical futility may lead to moral distress and compassion fatigue. Institutions provide multidisciplinary teams to address these issues, but if a patient’s capacity or competence is in question, their voice may not be heard. The toll on the healthcare provider and the patient can be permanently damaging, causing many nurses to leave the profession all together. I will attempt to determine the barriers to implementing the patient’s wishes, address the syndrome of moral distress among healthcare professionals, and attempt to offer solutions to promote well rounded, patient-centered care. / Urban Bioethics

Death is an inevitable part of life, yet many Americans fail to plan for this final part of life. Only about 1/3 of our country has an advance directive (Off White Papers, 2014). This underutilization of advance directives is reflected in our health care spending. It is estimated that 30% of all Medicare spending occurs during the last six months of a patient’s life. The numbers are even lower when broken down into sub-categories. Only 24% of older Black Americans possess an advance directive versus 44% of their older White counterparts (Huang, Neuhaus, & Chiong, 2016). Some studies found that African Americans were more likely to “express discomfort discussing death, want aggressive care at the end of life, have spiritual beliefs which conflict with the goals of palliative care, and distrust the healthcare system” (Johnson, Kuchibhatla, & Tulsky, 2008). Other studies have even concluded that Black race is an independent predictor of lack of advance directive possession (Huang et al., 2016). This paper further explores the possibility that race and ethnicity may simply be proxies for cultural values that impact advance directive possession. We’ll discuss the barriers, for both Black patients and health care providers, to advance directive possession as well as investigate culturally mindful interventions to combat the barriers. / Urban Bioethics

Death is inevitable, and research indicates that 80% of Americans wish to die at home. Does anyone know those wishes? Advance directives outline those wishes and personal decisions. Do advance directives make a significant difference in the experience of death for the patient, loved ones, and clinicians? Through interviews with loved ones of those who have died, as well as legal representative and a physician, this thesis examines the benefits and obstacles of having an advance directive, as well as the issues that have a high impact on whether and why an advance directive is written. Policy recommendations, business tactics, and community-based solutions are proposed to address these issues. It is clear that access to healthcare and the clinical professionals who can discuss end of life issues has a major impact on whether an advance directive is considered by the patient, along with health literacy skills and knowledge. / Urban Bioethics