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.

Introdução: O processo de morrer é uma experiência vinculada a considerações significativas para a existência do ser, principalmente quando sobrevêm no contexto familiar. Objetivo: compreender a experiência do familiar de pacientes em fase terminal de vida, que enfrentam o processo de morrer no mundo do hospital. Método: Com esta proposta, optei por realizar uma pesquisa qualitativa, norteada pela Fenomenologia existencial de Martin Heidegger. Os sujeitos do estudo foram 15 familiares que estavam acompanhando seus pacientes adultos, em fase terminal de vida, que enfrentavam o processo de morrer em um hospital universitário de Maceió, Alagoas. Os depoimentos foram obtidos por meio de entrevista, no período de fevereiro a maio de 2013, a partir da seguinte questão norteadora: Conte-me como é para você vivenciar a situação do seu familiar atualmente. Resultados: Da análise dos depoimentos dos familiares emergiram três estruturas, denominadas unificações ontológicas: Manifestação de Angústia dos familiares, que envolve a possibilidade do ser assumir-se como um ser-para-a-morte; Manifestação do Cuidado e da Solicitude, que compreende o momento de cuidar como algo significativo na existência; e Ser-aí no mundo do hospital, que compreende o ser lançado no mundo onde o limite entre a vida e a morte é tão estreito. Conclusões: A compreensão do fenômeno vivido por esses familiares permitiu apreender a dimensão do sofrimento relativo à condição de estar-no-mundo cuidando no processo de morrer. Aponta a relevância do tema MORTE na formação dos profissionais de saúde, sinalizando importância da reflexão dessa temática, para desenvolver uma assistência que seja compatível com a situação vivenciada pelos familiares diante da terminalidade. / Introduction: The death process is an experience linked to significant considerations to the existence of the being, mainly when they take place in the family context. Objective: To understand the experience of family members of terminal patients, who face the death process in the hospital setting. Method: A qualitative study was developed, in light of the existential phenomenology of Martin Heidegger. Study subjects were 15 family members who were accompanying adult terminal patients, who faced the death process at a teaching hospital in Maceió, Alagoas. The statements were obtained by means of interviews, between February and May of 2013, based on the following guiding question: What is it like for you to experience the current situation of your relative? Results: The analysis of the statements of the family members generated three structures, named ontological unifications: Manifestation of anxiety by the family members, involving the possibility of the individual assuming her/himself as a being-to-death; Manifestation of the care and concern, which comprehends the moment of caring as a meaning in the existence; and Dasein in the hospital setting, which comprehends the being inserted in a world with a narrow limit between life and death. Conclusion: The understanding of the phenomenon experienced by these family members allowed to apprehend the dimension of the suffering regarding the condition of being-in-the-world providing care in the death process. This study points to the relevance of the death theme in the education of health professionals and the need for reflecting on this issue so as to develop a compatible care to the situation experienced by families in face of this terminal situation.

Dentre as diversas questões éticas vivenciadas por pacientes terminais destacam-se a eutanásia e a distanásia, ambas consideradas imorais pelo personalismo ontológico proposto por Elio Sgreccia. O objetivo desta dissertação é verificar se o pensamento de Sgreccia pode ser justificado racionalmente de forma objetiva e se possui critérios de necessidade e universalidade. O método utilizado foi a análise dos próprios textos do autor e de suas fontes, tendo como técnica de abordagem a revisão histórica da ética médica desde o tempo de Hipócrates e a comparação do personalismo ontológico com as principais éticas dando ênfase aos conceitos de vida, pessoa, saúde, doença e corpo humano. Apresenta-se o personalismo ontologicamente fundamentado, com os princípios de defesa da vida, liberdade-responsabilidade, totalidade e subsidiariedade, comparando-o ao principialismo, com seus princípios de autonomia, beneficência, não maleficência e justiça. Descreve-se a proposta de Sgreccia para a solução de dilemas com o uso dos princípios secundários do mal menor e do duplo efeito, bem como a necessidade de hierarquização dos princípios primários. Destaca-se a hierarquia do benefício sobre a autonomia, demonstrando o valor intrínseco e inalienável da vida, bem como a subordinação da liberdade a esse valor. Conclui-se que, segundo o autor, os principais dilemas éticos do fim da vida em pacientes terminais são decorrentes de uma não uniformidade de termos, sendo a confusão entre eutanásia passiva e distanásia a principal. O esclarecimento ocorre com a aplicação dos conceitos iniciais que o autor busca na fonte aristotélico-tomista, bem como uma compreensão de autonomia semelhante à proposta por Kant e da morte não mais como um evento, mas como um processo que se inicia com a doença terminal. / Among the many ethical issues experienced by terminal patients, both euthanasia and dysthanasia stand out as being considered immoral by the ontological personalism proposed by Elio Sgreccia. The aim of this paper is to verify if Sgreccia’s theory can be rationally justified in an objective way and if it has necessity and universality criteria. The method used was the analysis of the author's own texts and sources, taking the historical review of medical ethics since Hippocrates as an approach technique, as well as comparing the ontological personalism with the main ethical theories, emphasizing the concepts of life, person, health, disease and the human body. The study presents the ontologically based personalism with the principles of protection of life, freedom-responsibility, totality and subsidiarity, in a comparison with the principlism and its principles of autonomy, beneficence, nonmaleficence and justice. Sgreccia’s theory is reported as a solution to dilemmas when using its secondary principles of less harm and double effect, and also presents the need to create a hierarchy system for its primary principles. The hierarchy of benefit stands out from autonomy, thus demonstrating the intrinsic and inalienable value of life, as well as the subordination of freedom to that value. Therefore, it is possible to conclude that, according to the author, the main ethical dilemmas concerning the end of life in terminal patients are due to the lack of standard expressions, especially between passive euthanasia and dysthanasia. The elucidation is given when applying the initial concepts which the author collects in the Aristotelian-Thomistic source, as well as in an understanding of autonomy similar to that proposed by Kant, and of death not as an event but as a process which starts with terminal illness.

O presente estudo teve por objetivo compreender as vivências emocionais de filhos adultos de genitor (pai ou mãe) acometido por câncer em progressão. Sabe-se que o câncer atualmente é uma das principais causas de morte na vida adulta e que, a despeito dos avanços diagnósticos e terapêuticos, alguns tipos de câncer têm aumentado em incidência ou permanecem entre aqueles cuja letalidade é alta. A gravidade da doença, somada a maior expectativa de vida da população em diversos países, impõe a filhos adultos a experiência de acompanharem o processo de agravamento que culmina na morte do genitor. Diante desse fato, a literatura científica situada no campo do luto tem se voltado para esse grupo, que, segundo alguns autores, ainda é negligenciado, sob a alegação de que a maturidade favorece naturalmente um melhor enfrentamento de perdas e que, por isso, pesquisas acadêmicas e serviços de saúde devem zelar apenas pelas necessidades de crianças e adolescentes confrontados com o luto filial. Outro fator que contribui com a desatenção à situação de filhos adultos de genitor com câncer avançado é a causa da morte, já que, não se tratando de morte acidental, violenta ou súbita, aparenta menor poder de impactar psiquicamente o enlutado. O que desafia essas noções é o incremento de livros autobiográficos e/ou de autoajuda que, junto a estudos científicos, apontam para a vulnerabilidade emocional gerada pela perda de pais. Esses trabalhos fortalecem e disseminam particularmente dois conceitos: luto antecipatório e orfandade adulta. Utilizamos como referência metodológica o Método Clínico-Qualitativo, entrevistando participantes que, em sua maioria, voluntariaram-se para participar após lerem cartaz-convite em salas de espera de uma clínica oncológica. Um participante foi diretamente convidado pela pesquisadora e outros dois decidiram participar após sugestão de um familiar que soube do estudo. As entrevistas semidirigidas foram gravadas, transcritas e categorizadas, oferecendo elementos para uma discussão compreensiva da situação investigada. Os trechos selecionados foram compondo o que, ao todo, são cinco categorias: o filho desamparado, o filho culpado o filho impotente, o filho criativo, o filho onipotente. Em uma análise detida de cada categoria, destacamos trechos mais representativos e buscamos discuti-los sustentados, em especial, por contribuições de Freud e Klein. A frequente referência a essas vivências emocionais desamparo, culpa e impotência ajuda a entender a necessidade desses filhos empregarem uma variedade de defesas psíquicas, algumas (chamadas aqui de embates contra a morte) utilizadas para a veemente negação da realidade imposta pela doença e outras, mais criativas (esforços pela vida), utilizadas para reparar danos imaginariamente causados à figura perdida, para preservá-la internamente como uma companhia perenizada e, também, para ligar-se a novas experiências que reduzam a dependência em relação a quem está morrendo. A multiplicidade de angústias relatadas por cada entrevistado sugere que o luto filial na vida adulta é um tema relevante de estudo e aplicação para profissionais de saúde mental, demandando um espaço de elaboração que ultrapassa ao largo o que um estudo acadêmico oferece a entrevistados / The aim of this study was to understand the emotional experiences of adult children of parents (father or mother) affected by cancer in advanced stages. It is known that cancer is currently one of the leading causes of death in adults. Despite diagnostic and therapeutic advances, some types of cancer have increased in incidence or remained among those with high mortality rates. The severity of the disease, coupled with longer life expectancy of the population in various countries, imposes on adult children the experience of accompanying the degeneration process that ends with the death of the parent. Scientific literature in the field of grief, which historically has concentrated on children and adolescents, is now focusing on this group that, according to some authors, is still neglected due to the assumption that maturity favors better coping with loss. Another factor that contributes to the disregard of adult children of parents with advanced cancer is the cause of death, given that accidental, violent or sudden deaths seem more likely to impact the mourner psychologically. What challenges these misconceptions is the increase of autobiographical or self-help books as well as scientific studies that point to the emotional vulnerability generated by the loss of parents. These readings strengthen two concepts: anticipatory grief and adult orphanhood. The Clinical-Qualitative Method was used as a methodological reference, by interviewing participants who volunteered after reading a poster-invitation in the waiting room of an oncology clinic. One participant was directly invited by the researcher and two others decided to participate upon the recommendation of a relative who had heard about the study. The semi-structured interviews were taped, transcribed and categorized, providing elements for a comprehensive discussion of the circumstances investigated. The excerpts were arranged into five categories: the desolate child, the guilty child, the powerless child, the creative child, the omnipotent child. The analysis of each category highlighted the most representative sections of the interview and sought to discuss them based on Freud and Klein. The recurrent reference to these emotional experiences vulnerability, guilt and helplessness helps explain the need of these adult children to make use of several psychological defenses, such as vehement denial of the new reality imposed by the disease (battles against death), or the more creative attempt to: repair imaginary damage caused to the lost figure, internally preserve an eternal companion and reduce reliance on the dying person (struggle for life). The myriad of sorrows reported by each participant suggests that filial grief in adult life is a relevant topic of study and practice for mental health professionals, demanding an elaborate work that exceeds the possibilities of what an academic study may offer the interviewed subjects

Ph.D. (Social Work) / Please refer to full text to view abstract

M.A. / The process of sudden hospitalization is often experienced as a negative and traumatic event in people's lives. Traditionally, these traumatic events are dealt with by the medical professionals in the hospital setting. Due to time constraints and the urgent nature ofthe medical crisis, the patient is often left in very capable hands but the family is often left out ofthis process. This type of crisis throws a family into a tumult of disorganization. Parsonnet and Weinstein (1987), state that when patients are critically ill, their families suffer extreme emotional distress, often without the support of medical staffwho must I focus on the needs ofthe patient first. This study focuses on the family from a systemic perspective and looks at the effects on the whole system when one member becomes critically ill. This type of traumatic event can therefore lead to the family experiencing feelings such as fear, helplessness, shock, distress and a total lack ofcontrol. Many ofthese feelings are common to most traumatic events. Three case studies are examined in which families describe their experience ofICU and sudden hospitalization and a qualitative analysis is then conducted to identify common themes among the three families. This research examines how the fields ofsupportive psychotherapy and emergency medicine can be combined in order to create an environment in which not only the patient's needs are attended to, but where the family system's needs can be supported and guided through an otherwise very traumatic experience. The concepts oftrauma and crisis will be discussed, as vyell as how this relates to family systems theory. The experiences offamilies will be discussed in detail and the possible methods that can be employed in order to support a family through this medical crisis. This study is limited in the fact that only one interview was conducted but this is an exploratory study and is therefore only the beginning of an interesting area ofresearch.

The general aim of this study was to determine the experiences of a sample of terminally ill patients in using spiritually focused psychotherapy. This was a qualitative study conducted to a sample of 2 terminally ill patients from hospice in Grahamstown, South Africa. The research was conducted in 3 phases: an initial in-depth interview conducted to determine the participants' level of spirituality as well as the extent to which their terminal illnesses had affected their functioning. This was followed by a minimum of 6 spiritually focused therapy (SFT) sessions as a second phase of the research. To determine the participants' experiences of SFT, 2-3 in-depth interviews were conducted during the 3m phase of the research study. The research revealed that a belief in a higher power helps terminally ill patients cope better with their illness and that social disconnectedness is related to HIV / AIDS stigma. It also revealed that terminal illness is co-morbid with other psychiatric symptoms such as depression, evokes existential concerns, results in a change in the level of spirituality and affects the whole family. Participants blamed themselves for their illness, but found that engaging in the process of forgiveness of self and others brought about psychological healing for them. They experienced SFT as a coping resource that assisted them to deal with the fear of death as well as increased insight into the development of psychopathology and spiritual blockages. It is recommended that a comprehensive and holistic assessment during intake be undertaken so that where spiritual needs are available, therapy can be spiritually augmented to ensure that such needs/ struggles are addressed. / KMBT_363 / Adobe Acrobat 9.54 Paper Capture Plug-in

This essay deals with the experiences of hospital school teachers, when teaching terminally and chronically ill children. Teachers form part of a multidisciplinary team of doctors, nurses, therapists, social workers and other caregivers. As a team they all share the same goal of assisting the child to better health with the minimum disruption to normal development and education. The effects on teachers personally; coping with emotional stresses of children being seriously ill and sometimes, unfortunately dying and professionally; by constantly adapting learning and teaching styles to suit the needs of these learners, are numerous when working in these conditions and often results in burnout. This essay explores these effects by inquiring into the lives of four teachers at one particular hospital school. This phenomenological study comes to a conclusion that hospital teachers need specific and distinctive characteristics to deal with issues out of the norm. They have to own extraordinary commitment and acknowledge the true value of teacher collaboration. Finally teachers needed ongoing support on a personal level; counseling, and on a professional level; teacher training and development in order to remain healthy, personally intact and at the spearhead of developments in the teaching profession. The essay ends with recommendations for hospital school teachers and hospital schools. / Dr. M.P. van der Merwe

Utilizing a collective case study design, I examined and described the filial therapy (FT) process and adaptations discovered to be necessary and unnecessary in working with families who have a child with a life-threatening illness in the hospital setting. Data from a total of 7 parents was utilized, including those who terminated early, in order to gain a greater understanding of adapting FT for families who have a child with a life-threatening illness and their participation patterns. The parents attended 10 one- to two-hour FT sessions. The data was analyzed to examine for themes, patterns and relationships intrinsically with each case participant, as well as across cases. Analysis indicated that parents with a child with a life-threatening illness had great difficulty committing to attend FT; and a high rate of attrition occurred for those who did commit. A theme regarding flexibility was found to be of eminent importance in a variety of manifestations including therapeutic methods, session format, location and time of sessions, and intense vs traditional FT. Therapeutic adaptations in flexibility found to be important including openness to cathartic and personal parenting sessions, tolerance of forgetfulness, and lowering typical therapeutic concerns of dependency in the relationship. An inability for parents in this situation to benefit from intense FT methods was also noted. Changes noted in the child of focus included increased confidence, increased cooperation in the medical setting, increased communication with the parent and with medical staff regarding medical issues, and increased communication with the parent regarding personal feelings and issues. Changes noted in the parents included increased confidence in parenting skills, increased awareness of the child's perceptions of the environment, increased tolerance in allowing the child to struggle in and out of the medical setting, with both emotional and physical pain in order to gain coping skills, increased ability to allow the child to empower self, and increased abilities in limit setting.

Includes bibliography. / The Acquired Immune Deficiency Syndrome (AIDS) has increasingly become a serious public health threat, reaching pandemic proportions. Against this background, the role of health care professionals is becoming progressively more important due to the multi-faceted impact of the disease on the lives of HIV-infected and AIDS-patients. The psychosocial impact of the disease compels social workers to contribute their services. The skills of clinical social workers however distinguish them from their counterparts in generic settings in that it enables them to create a therapeutic milieu conducive to the successful treatment of the AIDS-patient. Social workers in private practice may however be regarded as being in an even better position to deal with AIDS-patients due to the autonomous nature of their work environment. Several studies have been done both locally and abroad, on the role that knowledge, attitudes and behaviour of health care professionals play with regard to the treatment of the AIDS-patient. No such studies have however focussed on social workers in private practice as a population. Al though this population have sets of skills most appropriate for the treatment of these patients, the question however recurs as to whether they are adequately equipped regarding AIDS-education, and if they do perhaps share similar feelings of fear, stigma and attitudes of discrimination towards these patients as have surfaced in the studies mentioned above. This study therefore has as its main objectives the following: To establish whether social workers in private practice feel adequately equipped to deal with issues of HIV, AIDS and human sexuality; and to determine the degree of correlation among attitudes to AIDS-patients, homosexuals, terminally ill patients and sexuality, and other variables such as experience, gender and knowledge on the subject of AIDS.