Research into doctor patient communication and their roles is reviewed. Two series of semi-structured interviews with general practitioners (e.p.e) and patients separately are reported. In the first, 4 g. p. s each selected 6 patients for 3 groups; terminally ill with knowledge, terminally ill without, and chronic controls. Content analysis of patient transcripts revealed differences in frequency of utterances classed as showing knowledge. Differences between groups and qualitative analysis of all interviews, verified g.p.s’ categorisation. Knowledge was not simply absent or present, since all groups show awareness, but differ in the degree to which the nature of illness is openly acknowledged. One g.p. reported routinely informing patients, but others did not, although agreed this is occasionally appropriate. A typology of methods g.p.s and patients use to control information exchange is proposed. g.p.s' role formulations appear to underpin their reported communicative behaviour. 22 g.p.s were interviewed in the second series. Again they were asked to select patients, but few did this within the time allotted: therefore analysis focused upon g.p.s. Content analysis of interviews splits g.p.s into "informers" and "non informers". Qualitative analysis of g.p.s’ reported communication strategies suggests that underlying this simple dichotomy is a continuum from revelation through passive response to concealment. Strategies are implemented by various tactics; e.g. euphemism, uncertainty, denial, evasion, prompting questions. Differences in reported intentions and behaviour are interpreted by recourse to g.p.s' descriptions of their role during terminal care. Those who conceal attempt to maintain the Parsonian curative physician role and are reluctant to classify patients as terminal. Those who reveal try to abandon this role for one modelled on that of counsellor. Nearly all experience role ambiguity and attempt to resolve this in ways predicted by role theory.

O presente trabalho apresenta uma nova perspectiva para as discussões jurídicas e bioéticas acerca dos direitos da personalidade dos pacientes terminais e encontra em nosso ordenamento jurídico, na afirmação de um direito geral da personalidade, a plenitude da tutela civil dos bens jurídicos personalíssimos do enfermo, sobretudo nas etapas finais da doença, ocasião em que a hipermedicalização do processo de morrer destaca-se como o principal fator gerador de lesões de diversas naturezas a esses bens. No caminho para chegarmos à proteção geral da personalidade, examinamos alguns direitos especiais que emergem ao final da existência humana, como o direito à morte em momento natural. No intuito de recuperar a centralidade da pessoa humana como fim único a que devem servir o Direito e a Medicina, construímos a trajetória do conceito de pessoa em seu desenvolvimento jusfilosófico para afirmar que todo ser humano é pessoa e sujeito de direito (ubi homo sapiens, ibi persona), ainda que não possua capacidade jurídica de fato, e, com isso, demonstrar a impossibilidade de pertença a uma classe de não pessoas independentemente de circunstâncias ou do desenvolvimento biopsíquico humano. Asseveramos, também, que o cuidar e o tratar em pacientes gravemente enfermos e terminais deve relacionar-se, antes, ao homem em sua dignidade e plenitude, em uma concepção biomédica, filosófica e metafísica conjugada da sua existência, e não se reduzir à simples obstinação prognóstica e terapêutica, visão reducionista que relaciona tratar a doença a um investimento no prolongamento estéril da vida humana. Nesse sentido, apresentamos perspectiva jurídica inovadora para a enfermidade e para a vivência dessa condição, do ponto de vista de pacientes terminais, cuidadores e equipes de saúde, à luz do pensamento de Emmanuel Lévinas e à centralidade que ele outorga à figura do Outro, que ilumina nossa hermenêutica do instituto dos direitos da personalidade. Concluímos que se faz necessária uma mudança do paradigma atual de cuidados de saúde em fim de vida também na esfera jurídica, com a aceitação, na escolha terapêutica, da naturalidade do evento morte ao final da existência: da busca da cura, para o cuidar; da quantidade para a qualidade da vida que resta. / The thesis presents a new perspective of the legal and bioethical discussions regarding individual rights of terminal ill patients and finds in our legal system, in the assertion of a general individual right, the plenitude of the protection of the legal rights of the ill, especially at the last stages of the disease, when hipermedicalization of the dying process asserts itself as the major source of the various damages caused to individual rights. On the pathway to achieve the general protection of the personhood, we highlight some special rights which emerge at the end of human existence, as, for instance, the right for a death at a natural moment. To recover the centrality of the human person as the single and only end to which Law and Medicine should serve, we present herein a path of the concept of personhood in its juridical and philosophical development to affirm that every human being is an individual (ubi homo sapiens, ibi persona), even if he/she doesnt have legal capacity and, therewith, demonstrate the impossibility of belonging to a class of non-persons independently of circumstances or the bio-psychic development. We also argue that treating and caring of seriously ill and terminal patients should be related with person in its dignity and fullness, in a biomedical, philosophical and metaphysical conception of existence, irreducible to mere obstinacy in prognosis and treatment, as a result of a reductionist perspective which relates treating a disease to a futile investment of a sterile extension of human life. In this sense, we present a innovative juridical perspective to illness and the experience of this condition, from the point of view of terminal ill patients, caregivers and health care teams in light of the thought of Emmanuel Lévinas and the centrality that he grants to the figure of the Other, which illuminates our interpretation of individual rights. We conclude that a change in the extant paradigm of the end-of-life care in Brazil is imperative also in the legal realm, with the acceptance, in the therapeutic choice, of the natural path of death at the end of our existence: from the search for cure, to care; from quantity to quality of the remaining life.

There is evidence of a relationship between sleep-wake disturbances and pain variables in cancer patients. It is hypothesized that pain affects all aspects of sleep patterns. Pain has been known to affect sleep disturbances; however there are different facets of sleep-disturbances and pain that can be evaluated. These variables include pain distress, pain intensity, pain at its worst, relief from pain, sleep distress, how well the patient sleeps, how tired one feels, and drowsiness distress. Several studies identify relationships between sleep-disturbances and pain. This study using secondary analysis was designed to correlate variables related to sleep-wake disturbance and pain in cancer patients admitted to hospice home care. The study sample included 209 cancer patients from a previously completed clinical trial with various cancer diagnoses. Results of sleep and pain variables were re-analyzed using Pearson correlations. The results showed significant positive relationships between pain distress and sleep distress (p = .000), difficulty sleeping and pain intensity (p = .008), and sleep distress and pain at its worst (p = .008). There were no significant relationships found between sleep distress and relief from pain, pain distress and how well the patient sleeps, pain distress and how tired one feels, and pain distress and drowsiness distress. Sleep-wake disturbances and pain have been studied in cancer patients, but there is little known concerning pain and its correlation to sleep disturbances of cancer patients admitted to hospice home care. This study provided important information on the relationship between sleep-wake disturbance and pain variables in this group of cancer patients. This study provides data to support the necessity to provide complete and accurate assessments of sleep and pain symptoms on admission to hospice home care and throughout the patient's care to aid in improved quality of life.

Neste trabalho nós apresentamos um estudo da disciplina Teologia Prática, com a análise do aconselhamento pastoral diante de crises ocasionadas por doença que leva à morte. A primeira parte aborda a morte, como o último estágio da vida, buscando compreender os casos de enfermidades graves: a morte; o comportamento do ser humano, juntamente com seus familiares; suas atitudes; pensamentos; silêncio e esperança. E o comportamento do ser humano durante uma doença grave até a morte. A segunda parte se refere à crise gerada pela doença terminal; definição e tipos de crises; como lidar com as crises. Falamos, também, sobre a sobrevivência das famílias após perdas, especialmente, sendo uma crise que culminou em morte, utilizando-a como fator de crescimento. Nós analisamos a relação pastoral, seus objetivos e métodos de apoio em caso de crises por doença terminal. A terceira e última parte, traz um pequeno relato da história do aconselhamento pastoral; algumas contribuições históricas; como se tornou aconselhamento e a forma que chegou até nós. Algumas formas de abordagem com moribundos e suas famílias, e da maneira que isso pode ser usado com doentes no limiar da morte. Nós verificamos que em quase todas as situações com doentes terminais e morte, o ser humano precisa de algum aconselhamento / In this work we present a study of Practical Theologys discipline, with the analysis of the pastoral counseling ahead of crises caused by illness that leads to the death. The first part treats the death, as the last stage of the life, searching to understand the cases of grave diseases; the death; the behavior of the human being together with its familiar ones; its attitudes; thoughts; the silence and the hope. And the human beings behavior during a grave illness until the death. The second part relates to the crisis generated by the terminal illness; the definition and the types of crises; how to deal with the crises. We speak, also, on the survival of the families after losses, especially, being a crisis that culminated in death, using it as growth factor. We analyze the pastoral relation, its objectives and methods of support in case of crises by the terminal illness. The third and last part brings a small record of the history of the pastoral counseling; some historical contributions; as counseling became and as it arrived until us. Some forms of boarding with dying and its families, and how this can be used with diseased in the threshold of the death. We verify that in almost all the situations with sick terminals and death, the human being needs some counseling.

O presente trabalho apresenta uma nova perspectiva para as discussões jurídicas e bioéticas acerca dos direitos da personalidade dos pacientes terminais e encontra em nosso ordenamento jurídico, na afirmação de um direito geral da personalidade, a plenitude da tutela civil dos bens jurídicos personalíssimos do enfermo, sobretudo nas etapas finais da doença, ocasião em que a hipermedicalização do processo de morrer destaca-se como o principal fator gerador de lesões de diversas naturezas a esses bens. No caminho para chegarmos à proteção geral da personalidade, examinamos alguns direitos especiais que emergem ao final da existência humana, como o direito à morte em momento natural. No intuito de recuperar a centralidade da pessoa humana como fim único a que devem servir o Direito e a Medicina, construímos a trajetória do conceito de pessoa em seu desenvolvimento jusfilosófico para afirmar que todo ser humano é pessoa e sujeito de direito (ubi homo sapiens, ibi persona), ainda que não possua capacidade jurídica de fato, e, com isso, demonstrar a impossibilidade de pertença a uma classe de não pessoas independentemente de circunstâncias ou do desenvolvimento biopsíquico humano. Asseveramos, também, que o cuidar e o tratar em pacientes gravemente enfermos e terminais deve relacionar-se, antes, ao homem em sua dignidade e plenitude, em uma concepção biomédica, filosófica e metafísica conjugada da sua existência, e não se reduzir à simples obstinação prognóstica e terapêutica, visão reducionista que relaciona tratar a doença a um investimento no prolongamento estéril da vida humana. Nesse sentido, apresentamos perspectiva jurídica inovadora para a enfermidade e para a vivência dessa condição, do ponto de vista de pacientes terminais, cuidadores e equipes de saúde, à luz do pensamento de Emmanuel Lévinas e à centralidade que ele outorga à figura do Outro, que ilumina nossa hermenêutica do instituto dos direitos da personalidade. Concluímos que se faz necessária uma mudança do paradigma atual de cuidados de saúde em fim de vida também na esfera jurídica, com a aceitação, na escolha terapêutica, da naturalidade do evento morte ao final da existência: da busca da cura, para o cuidar; da quantidade para a qualidade da vida que resta. / The thesis presents a new perspective of the legal and bioethical discussions regarding individual rights of terminal ill patients and finds in our legal system, in the assertion of a general individual right, the plenitude of the protection of the legal rights of the ill, especially at the last stages of the disease, when hipermedicalization of the dying process asserts itself as the major source of the various damages caused to individual rights. On the pathway to achieve the general protection of the personhood, we highlight some special rights which emerge at the end of human existence, as, for instance, the right for a death at a natural moment. To recover the centrality of the human person as the single and only end to which Law and Medicine should serve, we present herein a path of the concept of personhood in its juridical and philosophical development to affirm that every human being is an individual (ubi homo sapiens, ibi persona), even if he/she doesnt have legal capacity and, therewith, demonstrate the impossibility of belonging to a class of non-persons independently of circumstances or the bio-psychic development. We also argue that treating and caring of seriously ill and terminal patients should be related with person in its dignity and fullness, in a biomedical, philosophical and metaphysical conception of existence, irreducible to mere obstinacy in prognosis and treatment, as a result of a reductionist perspective which relates treating a disease to a futile investment of a sterile extension of human life. In this sense, we present a innovative juridical perspective to illness and the experience of this condition, from the point of view of terminal ill patients, caregivers and health care teams in light of the thought of Emmanuel Lévinas and the centrality that he grants to the figure of the Other, which illuminates our interpretation of individual rights. We conclude that a change in the extant paradigm of the end-of-life care in Brazil is imperative also in the legal realm, with the acceptance, in the therapeutic choice, of the natural path of death at the end of our existence: from the search for cure, to care; from quantity to quality of the remaining life.

Made available in DSpace on 2014-12-17T14:19:48Z (GMT). No. of bitstreams: 1 MariaTPAS.pdf: 784270 bytes, checksum: c69da169b3308cfb69e9c781125e2a34 (MD5) Previous issue date: 2008-09-22 / Conselho Nacional de Desenvolvimento Cient?fico e Tecnol?gico / It has been reflected on Science and spirituality having as focus the relation between them and the process lived by terminal patients after the confirmation of the finitude of their lives. It has searched with this research to excite discussions that corroborate the tematization of a possible dialogue between science and spirituality, signaling perspectives of debates and formation of an understanding of the problematic that involves these human constructs in the development of alternatives for the understanding of the life finitude. We point out the moment of split between science and spirituality through the cartesian paradigm from a historical approach and after focusing the illness and death as foundation for our discussion. We use as methodological strategy, focal talks with terminal patients having as guidance a guideline with five punctuations: the singular citizen, diagnosis impacts, indicators of science, spirituality marks and death fear that served of base for analysis and data interpretation in according to selected theoretical foundations. Thus, it was possible to perceive that science, although not to keep an explicit dialogue with spirituality, it has pointed through is representation forms to the process indicatives that will culminate with the death. And these indicators had shown that in this direction it is efficient. We believe that the confrontation of the death can happen through of a new science that dialogues with the spirituality, where does not have separation between reason and emotion on the part of science; as well as it does not have reason disdain on the part of the spirituality / Reflete-se sobre a ci?ncia e a espiritualidade tendo como foco a rela??o entre elas e o processo vivido por pacientes terminais ap?s a confirma??o da finitude de suas vidas. Busca-se com essa pesquisa suscitar discuss?es que corroborem a tematiza??o de um poss?vel di?logo entre a ci?ncia e a espiritualidade, sinalizando perspectivas de debates e de forma??o de um entendimento sobre a problem?tica que envolve esses construtos humanos no desenvolvimento de alternativas para a compreens?o da finitude da vida. Apontamos o momento de cis?o entre e ci?ncia e espiritualidade atrav?s do paradigma cartesiano dentro de um enfoque hist?rico para em seguida focalizar a doen?a e morte como aporte para nossa discuss?o. Utilizamos como estrat?gia metodol?gica conversas focais com pacientes terminais tendo como guia uma pauta com cinco pontua??es: o sujeito singular, impactos do diagn?stico, indicadores da ci?ncia, marcas da espiritualidade e medo da morte que serviram de base para a an?lise e a interpreta??o dos dados de acordo com os aportes te?ricos selecionados. Assim, foi poss?vel percebermos que a ci?ncia, apesar de n?o manter um di?logo expl?cito com a espiritualidade, aponta atrav?s de suas formas de representa??o para os indicativos do processo que culminar? com a morte. E esses indicadores mostraram que nesse sentido ela ? eficiente. Acreditamos que o enfrentamento da morte pode acontecer por meio de uma ci?ncia nova que dialogue com a espiritualidade e onde n?o haja disjun??o entre raz?o e emo??o, por parte da ci?ncia; como tamb?m n?o haja desprezo da raz?o, por parte da espiritualidade