Disputes between patients and providers regarding life-sustaining medical treatment (LSMT) are universal across all U.S. states, yet policies regarding these disputes differ significantly. This dissertation determines that all 50 states have advance directive laws that protect a patient’s right to refuse LSMT even when a healthcare provider objects, yet only some states have policies that protect the patient’s right to choose to continue LSMT when a healthcare provider objects (a dispute known as medical futility). Some states have pro-patient laws that protect the patient’s right to make the final decision, while other states have enacted pro-provider medical futility policies that explicitly grant the provider authority to remove LSMT against the patient’s wishes. Finally, in one state, the law delegates the final decision to a third-party: institutional healthcare ethics committees. This dissertation studies the innovation and adoption of these 17 state medical futility policies, examining the theory that values determine both whether the state adopts a medical futility policy as well as what type of medical futility policy a state will adopt- as the policy actors that represent these values: policy entrepreneurs and interest groups. A comparative case study of successful third-party policy adoption in Texas contrasted against a failed effort in Idaho could not affirm the necessity of policy entrepreneurs for policy adoption but did affirm the necessity of interest group consensus and the role of values. Furthermore, quantitative analysis failed to offer statistically-significant evidence of value indicators, but did suggest that government ideology and political party affiliation may potentially become indicators of the type of medical futility policy that states choose to adopt.

MSc(Med), Bioethics and Health Law, Faculty of Health Sciences, University of the Witwatersrand / The current exclusion criteria for accessing renal dialysis in South African public hospitals places great emphasis on the allocation of scarce resources. The case of Soobramoney at the Constitutional Court highlighted the ethical and legal implications of providing this scarce resource. Mr. Soobramoney was denied access to renal dialysis on the basis of scarce resources and he did not qualify for care due to not meeting the criteria set for renal care. The Soobramoney case was considered mainly on the basis of scarce allocation of resources and offering treatment on an emergency basis. It was argued by the appellant that the state had an obligation to provide him with the treatment in terms of s 27(3) read with s 11 of the Constitution (para 14). This report takes a different slant and looks at the quality of life argument for increasing access to renal dialysis for those denied it based on current South African protocols. In exploring this concept one would venture to offer a definition of ‘quality of life’ according to Brown as an overall sense of well-being. This includes an individual’s satisfaction with their own lives (Brown, 2007: 72). A health related quality of life extends the definition to include the way a person’s v health affects their ability to carry out normal social and physical activities (ibid). A case is made for increasing access by developing programmes to cater for those in need of enhancing their quality of life. This is what is being motivated for in cases similar to Soobramoney, especially those with comorbid disease. The quality of life argument is based on the fact that there are indications in literature that patients with end-stage renal disease rate their own quality of life to be as important as the quality of life of the general population. Furthermore, there is no indication that the elderly live more miserable lives when they are on dialysis. The idea of respect for persons is highlighted - respect for the autonomous choices patients make concerning how they live their lives and including respect for them towards the end of their lives. Finally, I reflect on some legal issues concerned with the Soobramoney versus the Minister of Health Kwa-Zulu Natal 1997.

OBJECTIVE: The vast majority of physicians frequently faces ethical dilemmas and feels overwhelmed as a result. Those at Boston Medical Center are no exception. Various studies show more adept handling of ethical issues can improve the quality of care and patient safety by reducing moral distress of physicians and fostering better patient-physician relationship. The method of Preventive Ethics, which actively identifies recurrent themes and underlying systematic issues among ethics consultations, is more effective than the traditional, case-by-case approach in reducing the number of ethical conflicts. The purpose of this study is to identify common themes prompting ethics consultations and any hotspots among recurrent ethical dilemmas at Boston Medical Center by using the Armstrong Clinical Ethics Coding System. METHODS: A total of 32 ethics consultations handled by the BMC Ethics Committee between October 2010 and April 2013 were reviewed. Each consultation was coded using the Armstrong Clinical Ethics Coding System. The data was analyzed to identify the types of ethical dilemma that are most prevalent at BMC. The consultations involving the most frequently occurring issues were evaluated further to expose common themes among these cases and potential underlying systematic failures. RESULT: "Clinical Candidacy or Risk / Benefit Analysis" (6.25%), "Concern About Decision Maker Choices" (14.6%) and "Futility / Inappropriate or Nonbeneficial Treatment" (13.5%) were the most prevalent types of ethical issues at BMC. Not only are these three frequently occurring, they also have a very high tendency to occur simultaneously. Further analysis of consultations involving these three issues revealed that at BMC, there are frequent instances of conflict, in which family members serving as healthcare proxies disagreed with physicians in deciding the best interest of patients with severe ailments, ultimately precipitating ethics consultations. DISCUSSION: Comparison with similar retrospective studies previously carried out at other institutions suggests that consultation involving the issue of futility may be more frequently occurring at BMC, which might be coming from unique systematic problems. Several interventions such as improved policies or educational training in physician-family communication should be considered. CONCLUSION: According to the principles of Preventive Ethics, the issue of physician-healthcare proxy conflict regarding patient futility should be issue to be addressed at BMC. The Armstrong Clinical Ethics Coding System can serve as a much needed standard documentation format for ethics consultations, which would open up the possibility of more detailed future studies

Coordenação de Aperfeiçoamento de Pessoal de Nível Superior / This research aimed to understand the social representations of physicians and nurses about excessive investment related to the terminal patient during the health care process in an Adult ICU. The specific aims of such project were to describe how physicians and nurses mean the end of life and the excessive investment regarding the terminal patient, to investigate how such professionals evaluate their academic learning process concerning health care during the dying process, and to identify reactions and feelings of physicians and nurses related to the death of the terminal patient. It consisted of a qualitative, exploratory/descriptive research, founded on Social Representations Theory. Data collection techniques consisted on focused interviews and participant observations. Analysis was based on content analysis. The ethical principles were respected, so that the participants rights were preserved, and an Informed Consent Document was signed as a condition to participate in the research. Among the results, it was possible to observe that physicians and nurses build their social representations about dysthanasia in the ICU under the influence of several factors, having as a starting point the absence of teaching and preparation to deal with death in the hospital context during undergraduate studies and medical residency, as well as the complexity of the daily contact with death and the dying process, together with feelings and defense mechanisms, spirituality and religiosity. Moreover, there are assertions that dysthanasia really happens, the firm pleads of the family of the terminal patient admitted in an ICU, the great complexity of decision making, that begins before admission of the patient in the ICU, decisions whether to invest on the patient or not, and the criteria used to decide when to stop investing, the role of the health professionals team on decision making, the enormous preoccupations concerning ethical and legal repercussions related to the decisions made as concerns the Code of Professional Ethics and the Brazilian Law, besides absences and euphemisms employed when registering the diagnosis, prognosis and care offered to the terminal patient, and last, the expectation of a dignified death as concerns the professional himself and the family, wishing to die at home, together with the family, having accepted the end of life. This study concludes that there are urgent needs of improvement regarding multiple aspects related to death: its approach during undergraduate studies and residency; adequate communication among professionals during decision making process and during the professional activities in the ICU, the ponderation between the wishes of the family and the real possibilities of survival of the patient. It is important to consider the situation of the patient and think that, concerning a hypothetical end of life, everything the professional dispenses to the patient in an ICU is solely what he would not desire as a dignified death, for himself or his family members. / Esta pesquisa objetivou compreender as representações sociais de médicos e enfermeiros acerca do investimento excessivo no paciente terminal durante o processo de cuidar em uma UTI Adulto. Os objetivos específicos visaram descrever como médicos e enfermeiros significam terminalidade de vida e o investimento excessivo no paciente terminal; investigar como estes profissionais avaliam a sua formação acadêmica face ao cuidado no processo de morrer; e identificar reações e sentimentos de médicos e enfermeiros frente à morte do paciente. Constou de uma pesquisa qualitativa, exploratório-descritiva, fundamentada na Teoria das Representações Sociais. As técnicas de coletas de dados foram a entrevista focalizada e a observação participante. O processo de análise foi embasado na análise de conteúdo. Os princípios éticos foram respeitados, de forma a proteger todos os direitos dos participantes, com formalização da participação por meio de Termo de Consentimento Livre e Esclarecido. Dentre os resultados, observou-se que os médicos e enfermeiros constroem as suas representações sociais sobre a distanásia em UTI sob influência de múltiplos fatores, partindo da ausência do ensino e preparação para lidar com a morte no cotidiano hospitalar durante a graduação e a residência médica; a complexidade da convivência cotidiana com a morte e o processo de morrer, juntamente com os sentimentos e mecanismos de defesa; a espiritualidade e a religiosidade; as afirmações de que a distanásia realmente acontece; os pedidos obstinados da família do paciente terminal internado na UTI; as grandes complexidades das tomadas de decisão, que se iniciam desde antes da admissão do paciente na UTI, passando pelas dúvidas em relação ao investimento, ou não, no mesmo e nos critérios utilizados para se saber até onde investir; o papel da equipe nas tomadas de decisão; o enorme receio das repercussões éticas e legais em relação às decisões tomadas, no que se refere aos códigos de ética profissional e o Código Penal brasileiro, além das ausências e eufemismos empregados nos registros de diagnóstico, prognóstico e cuidado ofertado ao enfermo terminal; e, por fim, os anseios de boa morte para o próprio profissional e seus familiares, com desejos de falecer em casa, junto com a família, como forma de aceitação da sua finitude. Concluiu-se, neste estudo, que existem necessidades de aperfeiçoamento no que tange a múltiplos aspectos referentes à morte: sua abordagem, na graduação e residência; comunicação adequada entre os profissionais durante os processos decisórios e durante o trabalho na UTI; a ponderação entre os desejos da família e as reais possibilidades de sobrevivência do doente. É importante se colocar no lugar do doente e considerar que, em uma hipotética terminalidade de vida, tudo o que o profissional dispensa ao paciente dentro de uma UTI é tão somente aquilo que não desejaria, como morte digna, para si ou familiares.

Although provision of palliative care on the United States is growing, referrals to the service are often late or non-existent. The simultaneous care model provides a blueprint for the most progressive form of palliative care, which is palliation and disease-oriented treatments delivered concurrently. Research indicates the existence of a widespread misconception that associates palliative care with imminent death, and some organizations have chosen to re-brand their palliative care services to influence this perception. The goal of this study was to assess the effects of a name change from palliative care to supportive care on the communicative process during referrals to the service.

Coordenação de Aperfeiçoamento de Pessoal de Nível Superior / This research aimed to know as the physicians of the Neonatal and Pediatric Intensive Care Units (ICU) mean the dysthanasia. The specific objectives sought to identify the impact of the children's death to the physician; to understand like they live the difficulty of a child's cure; and to understand as the physician of the Neonatal and Pediatric Intensive Care Units identify their preparation to work with situations of life end in children. For so much, it was used an exploratory/descriptive study, of qualitative approach. Participated in the research 6 physicians and 5 residents, belonging to the Neonatal and Pediatric Intensive Care Units. As instrument for the data collection it was used a semi-structured interview. The information of the interviews was transcribed and analyzed starting from the content analysis. The ethical principles were respected, so that the participants rights were preserved, and an Informed Consent Document was signed as a condition to participate in the research. Among the results, it was observed that the physicians mean the dysthanasia in Neonatal and Pediatric Intensive Care Units under influence of multiples factors, leaving of the absence of the teaching and preparation to work with the death in the hospital daily during the graduation; the complexity of the daily coexistence with the death and the process of dying, together with the feelings and defense mechanisms; the statements that the dysthanasia really happens; the obstinate requests of the terminal patient's family interned in ICU, are going to have doubts in relation to the investment, or no, in the same and in the criteria used to know if they apply investing; the divergences of the team in the sockets of decision; the enormous fear of the ethical and legal repercussions in relation to the taken decisions, in what refers to the codes of practice and the Brazilian Penal code. It was ended, in this study, that improvement needs exist with respect to multiple aspects regarding the death: their approach, in the graduation and residence; appropriate communication among the professionals during decision making process and during the work in ICU; the consideration between the desires of the family and the real possibilities of survival of the patient. / Esta pesquisa objetivou conhecer como os médicos das UTIs neonatal e pediátrica significam a distanásia. Os objetivos específicos visaram identificar o impacto emocional da morte de crianças nos médicos; entender como eles vivenciam a dificuldade de cura de uma criança; e compreender como os médicos das UTIs neonatal e pediátrica identificam o seu preparo para lidar com situações de final de vida em crianças. Para tanto, utilizou-se de um estudo exploratório/descritivo, de abordagem qualitativa. Participaram da pesquisa 6 médicos e 5 residentes, pertencentes às UTIs neonatal e pediátrica. Como instrumento para a coleta de dados, utilizou-se de uma entrevista semiestruturada. As informações das entrevistas foram transcritas e analisadas a partir da análise de conteúdo. Os princípios éticos foram respeitados, de forma a proteger todos os direitos dos participantes, com formalização da participação por meio de Termo de Consentimento Livre e Esclarecido. Dentre os resultados, observou-se que os médicos significam a distanásia em UTI pediátrica e neonatal sob influência de múltiplos fatores, partindo da ausência do ensino e preparação para lidar com a morte no cotidiano hospitalar durante a graduação; a complexidade da convivência cotidiana com a morte e o processo de morrer, juntamente com os sentimentos e mecanismos de defesa; as afirmações de que a distanásia realmente acontece; os pedidos obstinados da família do paciente terminal internado na UTI, passando pelas dúvidas em relação ao investimento, ou não, no mesmo e nos critérios utilizados para se saber até onde investir; as divergências da equipe nas tomadas de decisão; o enorme receio das repercussões éticas e legais em relação às decisões tomadas, no que se refere aos códigos de ética profissional e o Código Penal brasileiro. Concluiu-se, neste estudo, que existem necessidades de aperfeiçoamento no que tange a múltiplos aspectos referentes à morte: sua abordagem, na graduação e residência; comunicação adequada entre os profissionais durante os processos decisórios e durante o trabalho na UTI; a ponderação entre os desejos da família e as reais possibilidades de sobrevivência do doente.

Thesis (Ph. D.)--University of Alabama at Birmingham, 2008. / Title from first page of PDF file (viewed Sept. 23, 2008). Includes bibliographical references.

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