Nursing moral philosophy in the care of the terminally ill Abstract The aim of the work The aim of the research part of the diploma thesis was to fid out what ethical dilemmas the medical staff recognizes in the care of the terminally ill and what role it occupies in accompanying the dying. The method to reach the goal To achieve the goal, we chose a qualitative research solution using a semi-structured interview, which ethical dilemmas of the non-medical healthcare staff recognizes and what roles it takes to make decisions at the end of the patient's life. The research group was consisted of 10 nurses who are part of palliative teams in selected health care institutions. The interviews which were provided, were rewritten, and using of coding techniques "paper-pencil", the data was organized into each categories. The gained knowledge and the conclusion The research which we have conducted reveals what ethical dilemmas we see as a non-medical healthcare professionals in their practice and which attitudes and roles we hold to the terminally ill, dying patients and their families. The patients with an incurable illness at the end of their lives find themselves in a very difficult situation. It is very important to improve the quality of the care and to be close to these patients. The medical staff member should be aware that any decision can become an ethical dilemma that we should recognize to find the best solution to meet the needs of the patient, respect his desire with maintain one´s dignity. Only that palliative care can be characterized as a first-rate care, focused on the patient's individuality and uniqueness

Submitted by Filipe dos Santos (fsantos@pucsp.br) on 2018-07-30T12:24:03Z No. of bitstreams: 1 Isabel Cristina Bueno Palumbo.pdf: 2591502 bytes, checksum: b3e0518b87654e1f3ee7324ff00b14d4 (MD5) / Made available in DSpace on 2018-07-30T12:24:03Z (GMT). No. of bitstreams: 1 Isabel Cristina Bueno Palumbo.pdf: 2591502 bytes, checksum: b3e0518b87654e1f3ee7324ff00b14d4 (MD5) Previous issue date: 2018-05-29 / Coordenação de Aperfeiçoamento de Pessoal de Nível Superior - CAPES / Fundação São Paulo - FUNDASP / This thesis aimed to analyze the meaning of religion for patients in palliative care and for their relatives. We start from the hypothesis that the approximation of religion and the development of religiosity and spirituality are fundamental to reduce the anguish provoked by the proximity of death among patients in palliative care and among their loved ones. It is an exploratory research of qualitative approach and historical method. To obtain the data, we conducted 11 interviews, 8 with patients and 3 with relatives of patients. The interviews were based on a semi-structured script with questions about the life history, religious experience and religion’s approach after the diagnosis of inability to cure. The interviews were realized at the Premier Hospital, on January 04th, 06th, 09th, 2017, and January 08th, 10th, 11th, 12th, 15th, 17th, 2018. During the month of December 2016, we visited the hospital every day to know the local routine and the hospitalized patients. For the construction of the script of questions and for the analysis of the data obtained from the interviews and the fieldwork, we adopted the historical method elaborated by Franz Boas (2004) and the hermeneutic analysis developed by Gadamer (1997). We also searched the history of the main concepts that guided our study. After analyzing and discussing the data of this research, we confirmed our hypothesis: we found that the majority of respondents came closer to religion after they were known to have incurable diseases / Esta tese teve como objetivo analisar o significado da religião para os pacientes em cuidados paliativos e para seus familiares. Parti da hipótese de que a aproximação da religião e o desenvolvimento da religiosidade e da espiritualidade são fundamentais para diminuir a angústia suscitada pela proximidade da morte entre os pacientes em cuidados paliativos e seus entes queridos. Trata-se de uma pesquisa exploratória de abordagem qualitativa e método histórico. Para a obtenção dos dados, realizei 11 entrevistas, 8 com pacientes e 3 com familiares de pacientes. As entrevistas tiveram como base um roteiro semiestruturado com questões que versavam sobre a história de vida, vivência religiosa e aproximação da religião depois do diagnóstico de impossibilidade de cura, e foram realizadas no Hospital Premier, nos dias 04, 06 e 09 de janeiro de 2017, e 08, 10, 11, 12, 15 e 17 de janeiro de 2018. Durante o mês de dezembro de 2016, visitei diariamente o hospital para conhecer a rotina local e os pacientes internados. Para a construção do roteiro de questões e para a análise dos dados obtidos com as entrevistas e o trabalho de campo, adotei o método histórico elaborado por Franz Boas (2004) e a análise hermenêutica desenvolvida por Gadamer (1997). Pesquisei também a história dos principais conceitos que orientavam nosso estudo. Depois de realizar a análise e a discussão dos dados desta pesquisa, confirmei minha hipótese, ao constatar que a maior parte dos entrevistados aproximou-se mais da religião depois de saber ser portador de doença incurável

Submitted by Filipe dos Santos (fsantos@pucsp.br) on 2018-12-04T11:47:55Z No. of bitstreams: 1 Izabela Aparecida de Almeida Guedes.pdf: 1333237 bytes, checksum: 23525ae5a48b6aafb51d22b3df9a8ac5 (MD5) / Made available in DSpace on 2018-12-04T11:47:55Z (GMT). No. of bitstreams: 1 Izabela Aparecida de Almeida Guedes.pdf: 1333237 bytes, checksum: 23525ae5a48b6aafb51d22b3df9a8ac5 (MD5) Previous issue date: 2018-09-28 / Conselho Nacional de Pesquisa e Desenvolvimento Científico e Tecnológico - CNPq / Receiving the diagnosis of a potentially fatal disease represents a crisis for patients and their families, affecting different life domains and promoting a re-signification of belief systems that are shaken by the threat to the continuity of life. Palliative care emerged as an alternative to the traditional curative model of health, aiming at relieving physical pain and giving comfort to emotional, social and spiritual suffering. This new approach ratified the inclusion of spirituality in the concept of health established by the World Health Organization, indicating the need to consider the spiritual dimension in view of the proximity of death. As a new paradigm of caring, palliative care also aims at encompassing anticipatory mourning experienced by the care unit during patient’s illness, as well as monitoring the mourning family after its relative’s death. The present study utilized a qualitative methodology in order to apprehend the meaning of spirituality assigned by the family member whose a loved one was in a end-of-life process. A collective case study was carried, with the participation of six family members attending a hospice in palliative care, and the investigation was done through field diary and semi-structured interviews. Data were analyzed through content analysis according to Bardin (2011) and the following thematic categories were found: expressions of anticipatory mourning, perceptions on/meanings of spirituality, meanings of mourning, protective factors, risk factors. The results suggest that spirituality is a support for those who are on the verge of losing a loved one and should not be neglected by health professionals. It has proved to be an important protection factor for the experience of mourning processes / O recebimento do diagnóstico de uma doença potencialmente fatal representa uma crise para pacientes e familiares, afetando diferentes áreas que compõem o viver e impulsionando a uma ressignificação dos sistemas de crenças, abalados frente à ameaça da continuidade da vida. Os cuidados paliativos surgiram como uma alternativa ao modelo curativo de saúde, propondo o alívio das dores físicas, emocional, social e espiritual. Essa visão ratificou a inclusão da espiritualidade no conceito de saúde estabelecido pela Organização Mundial de Saúde, demonstrando a necessidade da abordagem da dimensão espiritual frente à proximidade da morte. Apresentando-se como um novo paradigma para o cuidar, visa também o acolhimento do luto antecipatório, vivenciado pela unidade de cuidados durante um processo de adoecimento, bem como o acompanhamento do enlutado após a ocorrência da morte. No desenvolvimento do presente estudo foi utilizado o método qualitativo, a fim de conhecer o significado atribuído pelo familiar à espiritualidade frente ao processo de final de vida de um ente querido. Foi realizado um estudo de caso coletivo, com a participação de seis familiares atendidos em uma hospedaria, tendo sido a investigação feita por meio de diário de campo e entrevista semiestruturada. O instrumento utilizado para analisar os dados colhidos foi a análise de conteúdo segundo Bardin (2011), tendo sido encontradas as categorias temáticas: expressões do luto antecipatório, percepções/significados sobre a espiritualidade, significados sobre o luto, fatores de proteção, fatores de risco. Os resultados evidenciam que a espiritualidade é um suporte para aqueles que estão na iminência de perder uma pessoa amada, não devendo ser negligenciada pelos profissionais de saúde. Ela se mostrou como um importante fator de proteção para a vivência dos processos de luto

Este estudo objetivou conhecer as expectativas do paciente fora de possibilidades terapêuticas e sob cuidados paliativos com relação à assistência de enfermagem durante o processo de morrer, assim como identificar as necessidades destes pacientes relacionadas à comunicação com a equipe de enfermagem. Os dados foram coletados no primeiro semestre de 2005, por meio de entrevistas semi-estruturadas com questões norteadoras, junto a trinta e nove pacientes oncológicos sem prognóstico de cura, com limitação na capacidade de realizar atividades e submetidos à quimioterapia paliativa em uma instituição hospitalar da cidade de São Paulo. Após transcrição fiel das falas, os dados foram analisados segundo a metodologia de análise do conteúdo. Dos discursos dos entrevistados emergiram seis categorias, que evidenciaram o sofrimento multidimensional do câncer e seu tratamento, o fato de que apesar do sofrimento, a vida continua; a espiritualidade e a família enquanto fontes de apoio e estímulo para o enfrentamento da doença oncológica avançada. Revelam ainda a assistência de enfermagem desejada e o papel de destaque que representam a comunicação e o relacionamento interpessoal para quem enfrenta o processo de morrer. Concluiu-se que os pacientes entrevistados resgataram o valor da relação humana baseada na empatia e compaixão como base para o cuidado que esperam, desejando do profissional de enfermagem habilidade técnico-científica para a realização de ações que aliviam o sofrimento, especialmente o adequado controle da dor, comportamento empático e compassivo, informação e suporte emocional. A comunicação interpessoal comprovou ser importante atributo do cuidado paliativo à medida que o valor atribuído à mesma sobressaiu-se dos discursos, evidenciando a atenção dada aos sinais não–verbais do profissional para o estabelecimento do vínculo de confiança, a necessidade da presença compassiva, o desejo de não focar a interação e o relacionamento apenas na doença e morte e a valorização da comunicação verbal alegre, que privilegia o otimismo e o bom humor. / The objective of this study was to know the expectations of the patients who have no therapeutic possibilities and who are under palliative care regarding nursing assistance during the dying process, as well as to identify these patients’ needs related to communication with the nursing team. The data were collected during the first semester of 2005, through half-structured interviews with guided questions, among 39 oncologic patients without healing prognosis, having a limited capacity to perform activities and subjected to palliative chemotherapy in a hospital institution of the city of São Paulo, Brazil. After loyal transcription of the speeches, the data were analyzed according to the methodology of content analysis. From the interviewee speeches six categories emerged that proved the multidimensional suffering of cancer and its treatment, the fact that regardless of the suffering, life goes on; that spirituality and the family while acting as sources of support provide stimulation for confronting an advanced oncologic disease. The interviewees also revealed the nursing assistance which they desire and the role of note which represented the communication and interpersonal relationship for those who face the dying process. Therefore, it can be concluded that the interviewed patients redeemed the value of human relationships based on empathy and compassion as basis for the care they expect, desiring from the nursing professional a technical-scientific ability to perform actions necessary to relieve the suffering, especially an adequate control of pain, empathy and compassionate behavior, well informed and emotionally supportive. Interpersonal communication proved to be an important attribution to palliative care as long as its value has been prominent in the speeches, paying particular attention to the non-verbal signs of the professional for establishing a link of trust, the necessity of compassionate presence, the desire of not focusing the interaction and the relationship only on the disease and death and in its place concentrating on a cheerful verbal communication favoring optimism and good humor.

Este estudo objetivou conhecer as expectativas do paciente fora de possibilidades terapêuticas e sob cuidados paliativos com relação à assistência de enfermagem durante o processo de morrer, assim como identificar as necessidades destes pacientes relacionadas à comunicação com a equipe de enfermagem. Os dados foram coletados no primeiro semestre de 2005, por meio de entrevistas semi-estruturadas com questões norteadoras, junto a trinta e nove pacientes oncológicos sem prognóstico de cura, com limitação na capacidade de realizar atividades e submetidos à quimioterapia paliativa em uma instituição hospitalar da cidade de São Paulo. Após transcrição fiel das falas, os dados foram analisados segundo a metodologia de análise do conteúdo. Dos discursos dos entrevistados emergiram seis categorias, que evidenciaram o sofrimento multidimensional do câncer e seu tratamento, o fato de que apesar do sofrimento, a vida continua; a espiritualidade e a família enquanto fontes de apoio e estímulo para o enfrentamento da doença oncológica avançada. Revelam ainda a assistência de enfermagem desejada e o papel de destaque que representam a comunicação e o relacionamento interpessoal para quem enfrenta o processo de morrer. Concluiu-se que os pacientes entrevistados resgataram o valor da relação humana baseada na empatia e compaixão como base para o cuidado que esperam, desejando do profissional de enfermagem habilidade técnico-científica para a realização de ações que aliviam o sofrimento, especialmente o adequado controle da dor, comportamento empático e compassivo, informação e suporte emocional. A comunicação interpessoal comprovou ser importante atributo do cuidado paliativo à medida que o valor atribuído à mesma sobressaiu-se dos discursos, evidenciando a atenção dada aos sinais não–verbais do profissional para o estabelecimento do vínculo de confiança, a necessidade da presença compassiva, o desejo de não focar a interação e o relacionamento apenas na doença e morte e a valorização da comunicação verbal alegre, que privilegia o otimismo e o bom humor. / The objective of this study was to know the expectations of the patients who have no therapeutic possibilities and who are under palliative care regarding nursing assistance during the dying process, as well as to identify these patients’ needs related to communication with the nursing team. The data were collected during the first semester of 2005, through half-structured interviews with guided questions, among 39 oncologic patients without healing prognosis, having a limited capacity to perform activities and subjected to palliative chemotherapy in a hospital institution of the city of São Paulo, Brazil. After loyal transcription of the speeches, the data were analyzed according to the methodology of content analysis. From the interviewee speeches six categories emerged that proved the multidimensional suffering of cancer and its treatment, the fact that regardless of the suffering, life goes on; that spirituality and the family while acting as sources of support provide stimulation for confronting an advanced oncologic disease. The interviewees also revealed the nursing assistance which they desire and the role of note which represented the communication and interpersonal relationship for those who face the dying process. Therefore, it can be concluded that the interviewed patients redeemed the value of human relationships based on empathy and compassion as basis for the care they expect, desiring from the nursing professional a technical-scientific ability to perform actions necessary to relieve the suffering, especially an adequate control of pain, empathy and compassionate behavior, well informed and emotionally supportive. Interpersonal communication proved to be an important attribution to palliative care as long as its value has been prominent in the speeches, paying particular attention to the non-verbal signs of the professional for establishing a link of trust, the necessity of compassionate presence, the desire of not focusing the interaction and the relationship only on the disease and death and in its place concentrating on a cheerful verbal communication favoring optimism and good humor.

This thesis argues that the topic of active voluntary euthanasia (AVE) has been significantly neglected in existing political studies research, despite the fact that AVE reform raises fundamental questions about the scope and application of political authority. While this is predominantly a politics thesis in its focus, the thesis also draws when necessary on the broader scholarly literature on AVE, including literature fields such as ethics, as well as on broader public debate and the views of politicians. The thesis also examines, and engages with, the views of relevant traditional and contemporary political theorists including John Stuart Mill, Jeremy Bentham, and Amitai Etzioni. Whilst it will be acknowledged that liberal and utilitarian principles have helped shape and inform the AVE reform debate, and have useful contributions to offer, it is maintained that neither of these approaches provide a suitably comprehensive guide to policy. The thesis argues that communitarianism’s emphasis upon the communal good provides an indispensable counterbalance to potential problems that can arise with some other approaches, including excessive individualism and the uncertainties of moral subjectivism. More particularly, it is suggested that without an ongoing commitment to the principles of self restraint and ‘other regarding’ beneficence, legalised euthanasia could pose a serious threat to the welfare of vulnerable citizens. This is a point of view that is also expressed by many religious critics of AVE and it is argued that pro-choice advocates have relied unduly upon the separation of Church and State principle to deflect a legitimate criticism. Although it is conceded that a commitment to secular liberal–democratic principles is at odds with a legislative prohibition against the popularly endorsed option of last resort (beneficent) AVE it is, nevertheless, maintained that the concerns of these and other critics should not be ignored. Indeed, an examination of various case studies highlights the importance of ensuring a balance between individual autonomy and adequate legislative safeguards. Case studies examined include John Ashcroft’s controlled substances intervention in Oregon, US Congressional action to preserve the life of persistent vegetative state patient Terri Schiavo and Australian anti-suicide / active euthanasia legislation, particularly the Northern Territory’s Rights of the Terminally Ill Act. The conclusion of the thesis not only pulls together the key arguments regarding AVE but also highlights the insights which the AVE debate can provide for understanding broader issues in political theory and practice, particularly in regard to the rights of the individual and the responsibility of the state to legislate for the collective good. / Thesis (Ph.D.) -- University of Adelaide, School of History and Politics, 2008

Dissertation (Ph.D.)--University of South Florida, 2008. / Includes vita. Includes bibliographical references.

Objectives: To examine the attitudes of family members of the patients and medical staffs towards the policy of family presence during the resuscitation and any difference in attitudes between two groups, and to examine the factors influencing their attitudes. Methods: Descriptive questionnaire survey to analyze the attitudes, beliefs and concerns of family members of patients and medical staffs in the Intensive Care Unit of a district hospital in Hong Kong. Use chi-square test to compare family members and medical staffs to see any difference in attitudes about family presence during the resuscitation; and use logistic regression analysis to identify factors associated with supportive attitudes towards family presence during the resuscitation in both groups. Results: Among the respondents of 100 family members and 69 medical staffs, there were findings of significant difference in attitudes towards practicing FPDR, advantages of FPDR and disadvantages of FPDR between family members and medical staffs. Family members were more likely to support FPDR compared with medical staff (82% vs 36.2%, p<0.001). The attitudes towards different advantages and disadvantages were significantly different between family members and medical staffs. There was no difference between two groups in attitudes towards prerequisites for FPDR. Logistic regression analysis showed that family members who agreed beneficial effect of FPDR in relatives’ grieving process would be more likely to be supportive for FPDR (p=0.030, odds ratio (OR)=4.92, 95% confidence interval (CI)= 1.17-20.71) whereas the medical staffs who agreed beneficial effect of FPDR on family members would be more likely to be supportive for FPDR(p=0.003, OR=19.7, 95% CI 2.84-136.9). Conclusion: The results showed the great discrepancy of attitudes towards FPDR practice, FPDR benefits and FPDR risks between family members and the healthcare providers. Policy change of implementation of FPDR was at the present moment not feasible and practical in Hong Kong because of the resistance from the medical staffs. But the information acquired in the study did indicate a strong support and need for FPDR by the family members. Further investigations and works were required to overcome the obstacles to enhance the development of FPDR program in Hong Kong healthcare setting. / published_or_final_version / Public Health / Master / Master of Public Health

Doctor Legum - LLD / In South Africa, prison authorities are not primarily concerned with the health of the prison population. This is evidenced by inter alia: the vast number of complaints regarding health care received by the Judicial Inspectorate of Correctional Centres; natural deaths in prisons reported annually; litigation regarding health care and treatment in prisons; and the notoriously poor conditions of detention which inevitably have a negative impact on prisoners' health. There is as a result a noticeable difference between state provided health care to the public and health care in prisons. This thesis is therefore aimed at unpacking what the right to health means in respect of terminally ill prisoners. This question has been overshadowed by issues regarding medical parole in South Africa and intermittently by calls for palliative care in prisons. Whilst these issues are relevant to their plight, there is a need to articulate the scope of the right to health of terminally ill prisoners. This is imperative as not all prisoners who are terminally ill are eligible for medical parole and there are instances where the granting of such parole may be impractical. An analysis of the right to health in relation to terminally ill prisoners will provide legal certainty as to the legal entitlements regarding health care for one of the most vulnerable groups in society. They will know what they may legally claim and what they cannot insist upon in terms of the law.

O estudo busca conhecer o modo pelo qual o corpo do doente com câncer é apresentado por um conjunto de 15 filmes produzidos em Hollywood, entre 1970 e 2007, cujo tema central gira em torno do personagem adulto com câncer em estágio avançado. Com base nos Estudos Culturais, em sua vertente pós-estruturalista, penso que aprendemos a ver o corpo doente de diferentes formas, nas mais diversas instâncias educativas, sendo o cinema uma delas. A partir da análise cultural, sustentada pelas noções de “discurso” e “subjetividade”, propostas pelo filósofo Michel Foucault, articulo uma das possíveis leituras do corpus fílmico. Tal leitura possibilitou a construção de três lições de Hollywood sobre adoecer e morrer de câncer: “Primeira lição de Hollywood: aprendendo a ser doente”, “Segunda lição de Hollywood: aprendendo a cuidar do corpo doente” e “Terceira lição de Hollywood: aprendendo a morrer de câncer”. Nelas, avalio como o discurso cinematográfico atua como uma pedagogia cultural que produz sujeitos que vêem o corpo doente de determinado modo, que ensina a cuidar desse corpo e a morrer de câncer, nos dando pistas sobre como aprendemos a nos relacionar com a doença a partir dos artefatos midiáticos. Com isso, minha proposta é suscitar reflexões que possam contribuir, de alguma forma, para a assistência e para a docência em Enfermagem. / The study aims at learning how the body of the cancer patient is portrayed by a set of 15 movies produced in Hollywood between 1970 and 2007 whose central theme is about an adult character with cancer at advanced stage. Based on the Cultural Studies and their post-structuralism version, I think that we learn seeing the sick body in different ways, under the most varied educative instances, among which the movie picture stands out. Starting from the cultural analysis, supported by the notions of “discourse” and “subjectivity”, as proposed by philosopher Michel Foucault, I articulate one of the possible readings of the movie picture corpus. Such reading allowed the construction of three Hollywood lessons about getting sick and dying of cancer: “First Hollywood lesson: learning how being sick”, “Second Hollywood lesson: learning how taking care of the sick body” and “Third Hollywood lesson: learning how dying of cancer”. In such lessons, I make an assessment of how the movie picture discourse acts as a cultural pedagogy that produces subjects who see the sick body in a certain way and teaches how taking care of such body and how dying of cancer and therefore gives us hints about how we learn to get along with the disease from media artifacts. Thus, my proposal is raising reflections that may somehow contribute to care and education in Nursing. / El estudio busca conocer el modo como el cuerpo del enfermo con cáncer es presentado por un conjunto de 15 películas producidas en Hollywood, entre 1970 y 2007, cuyo tema central es acerca del personaje adulto con cáncer en estado avanzado. Con base en los Estudios Culturales y su versión posestructuralista, pienso que aprendemos a ver el cuerpo enfermo de distintas formas, en las más diversas instancias educativas, siendo el cine una de ellas. A partir del análisis cultural, sostenido por las nociones de “discurso” y “subjetividad”, propuestas por el filósofo Michel Foucault, articulo una de las posibles lecturas del corpus cinematográfico. Tal lectura posibilitó la construcción de tres lecciones de Hollywood acerca de quedarse enfermo y morir de cáncer: “Primera lección de Hollywood: aprendiendo a ser enfermo”, “Segunda lección de Hollywood: aprendiendo a cuidar del cuerpo enfermo” y “Tercera lección de Hollywood: aprendiendo a morir de cáncer”. En ellas, evalúo de qué forma el discurso cinematográfico actúa como una pedagogía cultural que produce sujetos que ven el cuerpo enfermo de determinado modo, que enseña a cuidar de ese cuerpo y a morir de cáncer, dándonos señales acerca de cómo aprendemos a relacionarnos con la enfermedad a partir de los artefactos de los medios. Así, mi propuesta es suscitar reflexiones que puedan contribuir, de alguna manera, para la asistencia y la enseñanza en Enfermería. Palabras-