Dignidade na vida, na doença e para a morte: as diretivas antecipadas como instrumento de valorização da pessoa

A dignidade da pessoa humana e a autonomia privada espraiam-se pela experiência da vida, alcançando a doença e a morte. As diretivas antecipadas, gênero dos quais são espécies o testamento vital e o mandato duradouro, constituem negócio jurídico de caráter existencial que têm por objetivo assegurar a realização da dignidade da pessoa e o cumprimento dos atos de autonomia nas situações em que a pessoa estiver incapacitada para manifestar sua vontade. As diretivas representam instrumento de autodeterminação através do qual a pessoa disciplina os tratamentos médicos que aceita ou não ser submetida, autoriza doação de órgão, estipula se tem interesse em conhecer seu estado clínico e/ou nomeia terceira pessoa para tomar estas decisões em seu lugar. As três primeiras hipóteses constituem o que usualmente se qualifica como testamento vital, enquanto a última situação descrita configura o mandato duradouro. O objeto de estudo abrange a evolução das diretivas antecipadas, a disciplina existente em países que já regulamentaram o tema, a legitimação no sistema jurídico brasileiro (o que autoriza a conclusão favorável a sua utilização independentemente de lei expressa) e a sistematização deste negócio jurídico perante o ordenamento jurídico.

A legitimação bioética e jurídica das diretivas antecipadas sobre a terminalidade da vida no Brasil.

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.

Limitações voluntárias dos direitos de personalidade no ordenamento jurídíco brasileiro:em especial, os direitos à vida e à integridade física

Tese de doutoramento, Ciências Jurídicas (Direito Civil), Universidade de Lisboa, Faculdade de Direito, 2014

Decision making in health care: limitations of the substituted judgement principle

The substituted judgement principle is often recommended as a means of promoting the self-determination of an incompetent individual when proxy decision makers are faced with having to make decisions about health care. This article represents a critical ethical analysis of this decision-making principle and describes practical impediments that serve to undermine its fundamental purpose. These impediments predominantly stem from the informality associated with the application of the substituted judgement principle. It is recommended that the principles upon which decisions are made about health care for another person should be transparent to all those involved in the process. Furthermore, the substituted judgement principle requires greater rigour in its practical application than currently tends to be the case. It may be that this principle should be subsumed as a component of advance directives in order that it fulfils its aim of serving to respect the self-determination of incompetent individuals.

The medical provision of hydration and nutrition: Two very different outcomes in Victoria and Florida

Decisions to withhold or withdraw medical hydration and nutrition are amongst the most difficult that confront patients and their families, medical
and other health professionals all over the world. This article discusses two cases relating to lawful withdrawal and withholding of a percutaneous endoscopic gastrostomy tube (PEG) from incompetent patients with no hope of recovery. Victoria and Florida have statutory frameworks that provide for advance directives, however in both Gardner; Re BWV and Schindler v Schiavo; Re Scliiavo the respective patients did not leave documented instructions. The article analyses the two cases and their outcomes from legal, medical and ethical perspectives.

False memories for end-of-life decisions

Objective: To examine people’s false memories for end-of-life decisions. Design: In Study 1, older adults decided which life-sustaining treatments they would want if they were seriously ill. They made these judgments twice, approximately 12 months apart. At Time 2, older adults and their self-selected surrogate decision makers tried to recall the older adults’ Time 1 decisions. In Study 2, younger adults made treatment decisions twice, approximately 4 months apart. At Time 2, younger adults tried to recall their Time 1 decisions. Main Outcome Measures: Percentage of participants who falsely remembered that their original treatment decisions were the same as their current decisions. Results: In Study 1, older adults falsely remembered that 75% of their original decisions were the same as their current decisions; surrogates falsely thought that 86% of older adults’ decisions were the same. In Study 2, younger adults falsely remembered that 69% of their original decisions were the same as their current decisions. Conclusion: Age alone cannot account for people’s false memories of their end-of-life decisions; we discuss other mechanisms. The results have practical implications for policies that encourage people to make legal documents specifying their end-of-life treatment decisions.

Current negative mood encourages changes in end-of-life treatment decisions and is associated with false memories

To investigate the effects of mood on people’s end-of-life treatment decisions and their false memories of those decisions, participants took part in two sessions. At Time 1, participants were experimentally induced into positive or negative moods. They decided whether they would want to receive or refuse treatments in a range of hypothetical medical scenarios, such as tube feeding while in a coma. Four weeks later, at Time 2, participants were induced into the same or the opposite mood and made these decisions a second time. They also recalled their previous decisions. Participants in negative moods at Time 2 changed more of their current decisions and falsely remembered more of their previous decisions than participants in positive moods. These findings suggest that people’s current moods influence whether they change their treatment decisions; current decisions in turn bias recall of past decisions

Adaptação transcultural do formulário POLST: Physician Orders for Life-Sustaining Treatment

Pós-graduação em Saúde Coletiva - FMB

Association between education in EOL care and variability in EOL practice: a survey of ICU physicians

This study investigated the association between physician education in EOL and variability in EOL practice, as well as the differences between beliefs and practices regarding EOL in the ICU. Physicians from 11 ICUs at a university hospital completed a survey presenting a patient in a vegetative state with no family or advance directives. Questions addressed approaches to EOL care, as well physicians' personal, professional and EOL educational characteristics. The response rate was 89%, with 105 questionnaires analyzed. Mean age was 38 +/- A 8 years, with a mean of 14 +/- A 7 years since graduation. Physicians who did not apply do-not-resuscitate (DNR) orders were less likely to have attended EOL classes than those who applied written DNR orders [0/7 vs. 31/47, OR = 0.549 (0.356-0.848), P = 0.001]. Physicians who involved nurses in the decision-making process were more likely to be ICU specialists [17/22 vs. 46/83, OR = 4.1959 (1.271-13.845), P = 0.013] than physicians who made such decisions among themselves or referred to ethical or judicial committees. Physicians who would apply "full code" had less often read about EOL [3/22 vs. 11/20, OR = 0.0939 (0.012-0.710), P = 0.012] and had less interest in discussing EOL [17/22 vs. 20/20, OR = 0.210 (0.122-0.361), P < 0.001], than physicians who would withdraw life-sustaining therapies. Forty-four percent of respondents would not do what they believed was best for their patient, with 98% of them believing a less aggressive attitude preferable. Legal concerns were the leading cause for this dichotomy. Physician education about EOL is associated with variability in EOL decisions in the ICU. Moreover, actual practice may differ from what physicians believe is best for the patient.

Attitudes toward end-of-life decision making in South Texas

Advance care planning has the potential to create positive outcomes in the realm of end-of-life health care. The completion of advance directives and living wills are vital in equipping patients with autonomy and ensuring that their end-of-life wishes are respected. However, there remains a lack of knowledge and low completion rates of advance directives despite their possible improvements and ramifications on health care at the end of life. This study seeks to determine the knowledge of and attitudes towards end-of-life decision-making in South Texas. The study is designed as a cross-sectional, exploratory survey using a descriptive survey instrument to query 71 subjects in South Texas. The setting for the study includes three distinct groups, two in San Antonio, Texas and one in Brownsville, Texas. Unique differences in demographics between the three groups, such as variability in age, ethnicity, language and religious affiliation allowed for preliminary associations to be concluded in describing the results of the survey instrument. Ultimately, this study describes the attitudes and perceptions of advance care planning in South Texas and reveals the need for further education and awareness of the topic, perhaps indicating the need for a public health initiative in this regard.^

Strange bedfellows: The ethics and politics of medical futility in Texas

Background: Futile medical treatments are interventions that are not associated with a benefit to the patient. The definition and concept of medical futility are controversial. The Texas Advance Directives Act (TADA) was passed in 1999 to address medically inappropriate interventions by allowing providers to withdraw inappropriate interventions against a surrogate decision maker's wishes following a review, attempt to transfer the patient, and 10-day waiting period. The original legislation was a negotiated compromise by players across the political spectrum. However, in recent years there has been increasing controversy regarding TADA and attempts to alter its applicability in Texas. ^ Purpose: The purpose of this project was to apply Paul Sabatier's advocacy coalition framework (ACF) to gain understanding into the historical, ethical, and political basis of the initial compromise, and determine the sources of conflict that have led to increased opposition to TADA. ^ Methods: Using the ACF model, key actors within the medical futility policy debate in Texas were aggregated into coalitions based on shared beliefs. A narrative summary based analysis identified the core elements of the policy subsystem, as well as the constraints and resources of the subsystem actors. Externalities that promoted adjustments to coalition beliefs and tactics used by coalition participants were analyzed. Data sources included review of the published literature regarding medical futility, as well as analysis of published newspaper accounts and editorials regarding the medical futility issue in Texas, legislative testimony, and review of weblogs and online commentaries dealing with the issue. ^ Results: Primary coalition participants in developing compromise legislation in 1999 were the Providers and Vitalists, with Autonomists gaining a prominent role starting in 2006. Internal factors associated with the breakdown of consensus included changes to the makeup of the governing coalition and changes in individual case information available to the Vitalist coalition. Externalities related to the intertwining of the Sun Hudson case and the Terri Schiavo case generated negative publicity for the TADA from progressive and conservative viewpoints. Dissemination of information in various venues regarding contentious cases was associated with more polarization of viewpoints, and realignment of coalition alliances. ^ Conclusions: The ACF provided an outline for the initial compromise over the creation of the Texas Advance Directives Act as well as the eventual loss of consensus. The debate between the Provider, Vitalist, and Autonomist coalitions has been affected by internal policy evolution, changes in the governing coalition, and important externalities. The debate over medical futility in Texas has had much broader implications in the dispute over Health Care Reform.^

Intensive care unit utilization among patients with cancer at the end of life

Over the last 2 decades, survival rates in critically ill cancer patients have improved. Despite the increase in survival, the intensive care unit (ICU) continues to be a location where end-of-life care takes place. More than 20% of deaths in the United States occur after admission to an ICU, and as baby boomers reach the seventh and eighth decades of their lives, the volume of patients in the ICU is predicted to rise. The aim of this study was to evaluate intensive care unit utilization among patients with cancer who were at the end of life. End of life was defined using decedent and high-risk cohort study designs. The decedent study evaluated characteristics and ICU utilization during the terminal hospital stay among patients who died at The University of Texas MD Anderson Cancer Center during 2003-2007. The high-risk cohort study evaluated characteristics and ICU utilization during the index hospital stay among patients admitted to MD Anderson during 2003-2007 with a high risk of in-hospital mortality. Factors associated with higher ICU utilization in the decedent study included non-local residence, hematologic and non-metastatic solid tumor malignancies, malignancy diagnosed within 2 months, and elective admission to surgical or pediatric services. Having a palliative care consultation on admission was associated with dying in the hospital without ICU services. In the cohort of patients with high risk of in-hospital mortality, patients who went to the ICU were more likely to be younger, male, with newly diagnosed non-metastatic solid tumor or hematologic malignancy, and admitted from the emergency center to one of the surgical services. A palliative care consultation on admission was associated with a decreased likelihood of having an ICU stay. There were no differences in ethnicity, marital status, comorbidities, or insurance status between patients who did and did not utilize ICU services. Inpatient mortality probability models developed for the general population are inadequate in predicting in-hospital mortality for patients with cancer. The following characteristics that differed between the decedent study and high-risk cohort study can be considered in future research to predict risk of in-hospital mortality for patients with cancer: ethnicity, type and stage of malignancy, time since diagnosis, and having advance directives. Identifying those at risk can precipitate discussions in advance to ensure care remains appropriate and in accordance with the wishes of the patient and family.^

End-of-life decision making in Europe and Australia - A physician survey

Background: The frequencies with which physicians make different medical end-of-life decisions (ELDs) may differ between countries, but comparison between countries has been difficult owing to the use of dissimilar research methods. Methods: A written questionnaire was sent to a random sample of physicians from 9 specialties in 6 European countries and Australia to investigate possible differences in the frequencies of physicians' willingness to perform ELDs and to identify predicting factors. Response rates ranged from 39% to 68% (N= 10 139). Using hypothetical cases, physicians were asked whether they would ( probably) make each of 4 ELDs. Results: In all the countries, 75% to 99% of physicians would withhold chemotherapy or intensify symptom treatment at the request of a patient with terminal cancer. In most cases, more than half of all physicians would also be willing to deeply sedate such a patient until death. However, there was generally less willingness to administer drugs with the explicit intention of hastening death at the request of the patient. The most important predictor of ELDs was a request from a patient with decisional capacity (odds ratio, 2.1-140.0). Shorter patient life expectancy and uncontrollable pain were weaker predictors but were more stable across countries and across the various ELDs (odds ratios, 1.1-2.4 and 0.9-2.4, respectively). Conclusion: Cultural and legal factors seem to influence the frequencies of different ELDs and the strength of their determinants across countries, but they do not change the essence of decision making.

Analysis of the impact of limitation of medical treatment orders during unplanned transfers from sub-acute care to emergency departments

BACKGROUND: The impact of limitation of medical treatment orders (LOMT) on patient outcomes following transfer from sub-acute care to the Emergency Department remains unclear.

METHODS: Retrospective medical record review of 431 adult in-patients who required ambulance transfer following clinical deterioration during a sub-acute care admission during 2010.

RESULTS: Common reasons for transfer were respiratory (18.9%) or neurological (19.0%) conditions; 35.7% (154/431) were transferred within one week of sub-acute care admission. LOMT orders were in place for 37.8% (n=163) patients who were older (p<0.001), with more comorbidities (p<0.005), specifically cardiac, renal and pulmonary disease than patients without LOMT. Patients with LOMT orders had more physiological abnormalities before transfer; tachypnoea (43.7% vs 28.6%), hypoxaemia (63.5% vs 48.4%) and severe hypoxaemia (27.6% vs 14.5%). There were no differences in rates of admission, cardiac arrest, Medical Emergency Team activation or ICU admission. For admitted patients, those with LOMT orders had significantly (p≤0.005) higher mortality: in-hospital (21.9% vs 11.3%); 30 days (23.9% vs 12.3%) and 60 days (28.2% vs 13.4%).

CONCLUSIONS: Patients with LOMT had higher levels of comorbidity and were more acutely ill during their sub-acute care admission. Once transferred those with a LOMT had similar rates of cardiac arrest, MET activation and unplanned ICU admission, but higher mortality.

Preferência do local de cuidados dos doentes em fim de vida: revisão sistemática da literatura

PROBLEMÁTICA: Com o aumento da população e comummente com o aumento de doenças crónicas, leva a um crescimento de doentes que necessitam de cuidados paliativos. A intervenção em cuidados paliativos visa o alívio do sofrimento e melhorar a qualidade de vida do doente e sua família, respeitando as suas preferências e desejos. Os profissionais de saúde necessitam de formação em Cuidados Paliativos, respeitando as expetativas dos doentes e permitir que a pessoa seja cuidada no seu local preferido de cuidados e não recorrer consecutivamente a urgências e internamentos de agudos. OBJETIVOS: Demonstrar a importância da identificação da preferência do local de cuidados dos doentes em fim-de-vida, compreender a importância do planeamento de cuidados e Diretivas antecipadas de vontade (DAV), relacionar a escolha do local de cuidados com o local de morte, identificar os fatores que influenciam e condicionam a escolha do local de cuidados dos doentes em fim-de-vida e por fim, perceber a organização e qualidade dos serviços. DESENHO: Revisão sistemática da literatura que inclui estudos de natureza qualitativa. METODOLOGIA: Foram incluídos oito estudos, publicados entre 1 de Janeiro de 2016 e 31 de Agosto 2016, pesquisados em bases de dados de referência e com acesso ao texto integral. RESULTADOS: Este estudo demonstra a importância das preferências dos doentes e serem registadas, a importância das Diretivas Antecipadas de Vontade, bem como o planeamento do cuidado de forma antecipada. É fundamental ter em conta os fatores que influenciam e condicionam a escolha do local de cuidados. CONCLUSÃO: Deve dar-se importância às preferências do local de cuidado dos doentes em fim-de-vida. Os doentes em fim-de-vida na sua globalidade preferem ser cuidados e morrerem em casa. As equipas multidisciplinares desenvolvem um papel preponderante no cuidado aos doentes em fim-de-vida. Quando os cuidados prestados são de alta qualidade, permite ao doente ser cuidado e morrer no seu local preferido.