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

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.

Communication concerning the care one wishes to receive at the end of life (EOL) is central to ensuring that wishes are honored. Many studies have examined doctor-patient or doctor-family EOL communication. However, relatively few studies have focused on the occurrence of EOL care discussions among family members. This is an important topic, as research suggests that advance directives (ADs) are ineffective if patients have not involved surrogate decision-makers, most of whom are family members. This study examined EOL care discussions among family members. It used quantitative and qualitative data from a diverse sample of older adults from West Central Florida collected for the purpose of this examination. The quantitative and qualitative data were analyzed separately and together. This study employed the Transtheoretical Model, which proposes that individuals are in varying behavioral “stages of change” and that bringing about a behavioral change requires understanding their particular stage and adapting interventions appropriately. Statistical analysis of the quantitative data (N=364) using multinomial logistic regression showed that participants were in distinct stages that were associated with several factors, including family involvement with health care decision-making and communications with doctors. Racial and ethnic differences were not found in controlled analysis, though Hispanics were less likely to be in more advanced EOL care discussion stages in unadjusted analyses. Several themes were found in qualitative analysis of focus groups (n=36) drawn from the larger sample. Findings suggested that those who engaged in family EOL care discussions were more careful planners overall, more accepting of death, and able to manage complex family dynamics. They also had greater knowledge of EOL matters, largely related to knowledge of loved ones EOL wishes. The quantitative-qualitative (mixed-methods) study reinforced the role of family relationships in general in whether EOL care discussions occurred. It also highlighted the role of being proactive and having EOL care knowledge. All three studies – the quantitative, qualitative, and mixed methods showed the potential for doctors and other health professionals to help families with EOL care discussions and ACP overall.

The aim of this diploma work is to search the answer to question: What are the causes for little use of advanced directives in real life from expert's point of view? Text is separated into theoretical part, methodological and analytical. In theoretical part, the autor is conceptualising basic terms from main research question and is leading the revers into the context. Methodological part is revealing the background of the research, which was carried out by qualitative research strategy through half-structured interviews with chosen experts in problems with advanced directives. In analytical part are presented results of research, which the autor is comparing to theoretical roots. Particiapnts of the research are seeing the causes of little use in advanced directives in little information about its existence, in legal format and its rising concerns from possible legal punishment and last but not least it can be caused by ethical and personal background. Keywords Advanced directives, illness, autonomy, causes, practise.

The aim of this diploma work is to search the answer to question: What are the causes for little use of advanced directives in real life from expert's point of view? Text is separated into theoretical part, methodological and analytical. In theoretical part, the autor is conceptualising basic terms from main research question and is leading the revers into the context. Methodological part is revealing the background of the research, which was carried out by qualitative research strategy through half-structured interviews with chosen experts in problems with advanced directives. In analytical part are presented results of research, which the autor is comparing to theoretical roots. Particiapnts of the research are seeing the causes of little use in advanced directives in little information about its existence, in legal format and its rising concerns from possible legal punishment and last but not least it can be caused by ethical and personal background. Keywords Advanced directives, illness, autonomy, causes, practise.

Advance care planning is a conversation about personal values, future treatment choices, and designation of a surrogate decision-maker, that someone has in advance of a health crisis. Most existing studies on advance care planning have taken place outside of home health among populations with HIV/AIDS, cancer, dementia, and end stage renal disease. The U.S. home health population is living longer with chronic conditions such as pulmonary and cardiovascular illnesses, and hospitalization is a poor outcome. In 2016, Medicare implemented the Home Health Value-Based Purchasing Model, in which reimbursement rates for agencies in 9 regionally representative states were dependent on quantitative measures of quality performance. Part of the program was a process-level mandate requiring agencies to report on advance care planning. The aim of this study was to examine the relationship of home health advance care planning protocols with hospitalization rates. Descriptive and regression analyses were conducted on survey data of protocols and agency data of demographics and outcomes. Statistical significance was found in the positive correlation between advance care planning protocols and hospitalization. Recommendations are made for broadening the scope of evaluation of quality in home health to include goal-concordant care and transitions to appropriate services.

Background: Home health is the fastest-growing healthcare setting in the country. Through Home Health Value-Based Purchasing (HHVBP), the Center for Medicare and Medicaid Services (CMS) provides incentives or penalties to HHAs based on outcomes. Hospitalization and emergency department use are weighted heaviest as poor outcomes. HHVBP requires HHAs to report on whether they are engaging in advance care planning (ACP) conversations. For this study, ACP was defined as a conversation held in advance of a medical crisis with a loved one and/or a health care provider about goals; values; preferences for future medical treatments; and choice of a surrogate decision-maker. Purpose: to determine whether the proportion of Black patients was correlated with robustness of HHAs’ ACP protocols and levels of acute care services use. Methods: A cross-sectional, quasi-interventional design was used. The sample size was n = 89. Electronic surveys about ACP protocols were distributed to HHAs. Existing data about demographics and acute care services use were accessed via CMS websites. Spearman’s correlation coefficient was used. Results: No relationship was found between robustness of ACP protocols and the proportion of Black population per agency. No relationship was found between overall acute care services use rates proportion of Black patients. However, a trend was found: The greater proportion of Black patients, the greater the tendency for an agency to have a higher hospitalization rate. Discussion: Results are compared to current literature and to a CMS-commissioned study’s discussion about the potential for value-based purchasing programs to exacerbate health disparities in vulnerable populations.

京都大学 / 新制・課程博士 / 博士(人間健康科学) / 甲第23385号 / 人健博第92号 / 新制||人健||6(附属図書館) / 京都大学大学院医学研究科人間健康科学系専攻 / (主査)教授 田村 恵子, 教授 稲富 宏之, 教授 溝脇 尚志 / 学位規則第4条第1項該当 / Doctor of Human Health Sciences / Kyoto University / DFAM

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