Background: Studies show that healthcare professionals often experience ethical difficulties in their relations with patients, relatives, and other professionals and in relation to organisational issues, and these can sometimes be difficult to handle. Failing to act or to relate in accordance with one’s values for what is good and right might cause a troubled conscience that is connected to feelings of guilt and ill-being. Ethical issues related to the care of patients with end-stage renal disease have been described, but no studies in this context have been found that explore registered nurses’ (RNs’) and physicians’ experiences of being in ethically difficult situations that give rise to a troubled conscience. The importance of communicating ethical issues in order to understand and handle ethically difficult care situations has been emphasized. Various forms of clinical ethics support (CES) have been described and evaluated, but studies on the communication processes and the organisation of CES interventions are sparse and no study describing a CES intervention based on Habermas’ theory of communicative action has been found. Aim: The overall aim was to increase our understanding about being in ethically difficult care situations and about how communication concerning ethical issues in healthcare can be promoted. More specifically, the aim of studies I and II was to illuminate experiences of being in ethically difficult situations giving rise to a troubled conscience among RNs and physicians, while studies III and IV aimed to describe the communication of value conflicts (III) and the organisation and performance of a CES intervention (IV). Methods: In studies I and II narrative interviews with ten RNs (I) and five physicians (II), were performed in a dialysis care context. The interviews were analysed using a phenomenological hermeneutic approach. In studies III and IV, eight audio- and video-recorded and two audio-recorded sessions of the CES intervention, were conducted and sorted by the data tool Transana and analysed in accordance with a qualitative content analysis (III) and a qualitative concept- and data-driven content analysis (IV). Results: The RNs’ narratives (I) resulted in the theme ‘Calling for a deliberative dialogue’. Their narratives expressed feelings of uncertainty, solitude, abandonment, and guilt in complex and ambiguous ethically difficult situations. The narratives concerned the value conflict between preserving life by all means and preserving life with dignity. The physicians’ narratives (II) resulted in the themes ‘Feeling trapped in irresolution’ and ‘Being torn by conflicting demands’. Their narratives expressed feelings of uncertainty, solitude, abandonment and guilt related to the obligation to make crucial decisions and in situations when their ideals and the reality iii clashed. The analysis of the communication of value conflicts during the CES intervention inspired by Habermas’ theory of communicative action (study III) revealed a process of five phases: a value conflict expressed as feelings of frustration, sharing disempowerment and helplessness, revelation of the value conflict, enhancing realistic expectations of the patients and relatives, and seeing opportunities to change the situation instead of obstacles. The CES intervention (study IV) was organised as a framework with a given structure and an openness for variations to facilitate communicative action. Three courses of actions to reach a communicative agreement were identified and concerned the approach to achieve a permissive communication, opening up for extended views, and enhancing mutual understanding (IV). Conclusion: The results show that both RNs and physicians expressed feelings of uncertainty abandonment and loneliness in similar ethically difficult situations but from different points of view. They struggled with the same value conflicts and feelings, but they did not share their struggles with each other. The lack of communication and confirmation led to distrust and increased feelings of uncertainty. The CES intervention, inspired by Habermas’ theory of communicative action, offered the possibility of dealing with experiences of ethically difficult care situations. In the permissive atmosphere, the professionals helped each other to balance their ambiguity, frustrations, and powerlessness and came to an agreement about how to handle the value conflicts and how to act. The findings from this CES intervention constitute a step towards a CES method that is clearly described so that leaders can be educated and extended intervention studies with different kinds of data can be conducted in order to further develop knowledge about how to promote an inter-professional dialogue about ethical difficulties.

No description available.

No description available.

The starting point of the present thesis is nurses’ reported experiences of disagreements with physicians for pushing life sustaining treatment too far. The overall aim was to describe and compare nurses’ and physicians’ perspectives on the boundaries for life-sustaining treatment and to evaluate whether ethics rounds could promote mutual understanding and stimulate ethical reflection. A mixed methods design with qualitative and quantitative data was used, including interviews and questionnaires. The health professionals’ experiences/perceptions were based on known patients foremost from general wards, but also intensive care units, at four Swedish hospitals. The first two studies treated the perspective on boundaries for life-sustaining treatment and the last two evaluated philosopher- ethicist led ethics rounds. Analysis of data was performed using a phenomenological approach and content analysis as well as comparative and descriptive non-parametric statistics. In the first study, the essence of the physicians’ decision-making process to limit life-sustaining treatment for ICU patients, was a process of principally medical considerations in discussions with other physicians. In the second study, there were more similarities than differences between nurses’ and physicians’ opinions regarding the 714 patients studied. The physicians considered limited treatment as often as the nurses did. The ethics rounds studies generated mixed experiences/perceptions. It seemed that more progress was made toward the goal of promoting mutual understanding than toward the goal of stimulating ethical reflection. Above all, the rounds seemed to meet the need for a forum for crossing over professional boundaries. The most salient finding was the insight to enhance team collaboration, that the interprofessional dialogue was sure to continue. Predominating new insights after rounds were interpreted as corresponding to a hermeneutic approach. One of nurses’ negative experiences of the ethics rounds was associated with the lack of solutions. Based on the present findings, one suggestion for improvement of the model of ethics rounds is made with regard to achieving a balance between ethical analyses, conflict resolution and problem solving. In conclusion, the present thesis provides strong evidence that differences in opinions regarding boundaries for life-sustaining treatment are not associated with professional status. The findings support the notion of a collaborative team approach to end-of-life decision-making for patients with diminished decisionmaking capacity. There is an indication that stimulation of ethical reflection in relation to known patients may foremost yield psychosocial insights. This could imply that social conflicts may overshadow ethical analysis or that ethical conflicts and social conflicts are impossible to distinguish.

Introdução: A crescente prevalência das condições crônicas de saúde traz a demanda por Cuidados Paliativos (CP) para a agenda da Atenção Primária á Saúde (APS), gerando questionamentos acerca do impacto da incorporação dos CP sobre os problemas éticos da APS. A bioética não é só reativa, mas precisa reconhecer prospectivamente desafios éticos. Objetivos: Discutir desafios éticos (DE) para incorporação dos CP na APS, considerando o desempenho dos atributos deste âmbito do sistema de saúde na Região de Parelheiros, São Paulo; Cotejar os: problemas éticos dos cuidados paliativos na APS com o Instrumento PCATool-Brasil; problemas éticos dos CP na APS com a avaliação que os profissionais fazem do desempenho dos atributos deste nível do sistema de saúde na Região de Parelheiros, SP; o discurso dos gestores da saúde sobre a atenção às condições crônicas com os problemas éticos dos CP na APS. Método: Estudo de Caso, com múltiplas fontes de dados: entrevistas com profissionais da ESF para aplicação do PCATool-Brasil Versão Profissionais; discursos dos gestores locais sobre a rede de atenção às condições crônicas; resultados de uma scoping review sobre problemas éticos dos CP na APS. As perguntas e os resultados do PCATool foram correlacionadas com os desafios éticos sintetizados a partir dos problemas éticos da scoping review. O cenário de estudo fica na Região Sul da cidade de São Paulo, área com cobertura de ESF em quase 100%, com carência de serviços especializados e alta vulnerabilidade em saúde. Resultados: Os DE foram: o despreparo dos profissionais frente aos CP; a comunicação falha entre os profissionais na rede de atenção à saúde; infraestrutura inadequada para assegurar a continuidade da assistência paliativa por 24 horas; desgaste dos profissionais da APS devido á sobrecarga do trabalho; desconforto para falar sobre CP com o paciente; apoio familiar inapropriado; desconhecimento das Diretivas Antecipadas de Vontade. Considerando o desempenho dos atributos da APS como avaliado pelos profissionais da ESF na Região de Parelheiros, os três primeiros desafios éticos são as áreas de maior tensão ética para a incorporação dos CP na APS. Os discursos dos gestores reconhecem a demanda por CP existente no território, porém, mencionam que as demandas relativas às condições de violência e vulnerabilidades da Região acabam sendo prioritárias pelas urgências que representam. Todos os atributos do PCATool foram relacionados com os desafios éticos indicando que a avaliação do desempenho dos atributos permite reconhecer áreas de tensão ética na releitura feita do Instrumento. Conclusão: Identificando proativamente os DE dessa incorporação, com base na experiência de equipes que já ofertam este serviço e contextualizando-a à realidade local por meio do desempenho dos atributos da APS, torna-se possível confrontá-los com questões éticas correntes na APS, apontando caminhos para os profissionais e gestores com educação continuada, deixando-os mais preparados para o reconhecimento e manejo dos CP, com vistas a fomentar os valores necessários para o novo cenário dos serviços com a incorporação dessa atenção na APS. / Introduction: The increasing prevalence of chronic health conditions brings demand for Palliative Care (PC) to the agenda of Primary Health Care (PHC), raising questions about the impact of the merger of PC on the ethical problems of APS. The bioethics is not only reactive, but must prospectively recognize ethical challenges. Objectives: To discuss ethical challenges (EC) for incorporation of PC in the PHC, considering the performance of the attributes of this part of the health system in Parelheiros Region, São Paulo; Collating: ethical problems of palliative care in PHC with PCATool-Brazil Instrument; ethical problems of PC in the PHC with the assessment that the professionals do the performance attributes of this level of the health system in Parelheiros Region, SP; the discourse of health managers of care for chronic conditions with the ethical problems of PC in the PHC. Method: Case Study with multiple data sources: interviews with Family health strategy (FHS) professionals for the application of PCATool-Brazil Version professionals; speeches by local managers on the network of care for chronic conditions; results of a scopingreview on ethical problems of PC in the PHC. The questions and results of PCATool were correlated with the ethical challenges synthesized from the ethical problems of scopingreview. The study scenario is in the southern region of São Paulo, FHS coverage area with almost 100%, with lack of specialized services and high vulnerability to health. Results: the EC were: the unpreparedness of the professionals in the PC; communication failure among professionals in the health care network; inadequate infrastructure to ensure the continuity of palliative care for 24 hours; wear PHC practitioners due to work overload; discomfort to talk about PC with the patient, familiar support inappropriate; ignorance of the Advance Directives Will. Considering the performance of PHC attributes as evaluated by FHS professionals in Parelheiros Region, the first three ethical challenges are the areas of highest ethical tension to the incorporation of PC in the PHC. The speeches of the managers recognize the demand for PC existing on the territory, however, mention that the demands on the conditions of violence and Region vulnerabilities end up being priority by the urgencies they represent. All PCATool attributes were related to the ethical challenges indicating that the attributes of performance assessment allows us to recognize areas of ethical tension in rereading made the instrument. Conclusion: Identifying proactively the EC this merger, based on the experience of teams that have proffer this service and contextualizing it to local conditions through the performance attributes of the PHC, it is possible to compare them with current ethical issues in PHC, pointing paths for professionals and managers with continuing education, making them more prepared for the recognition and management of PC, designed to promote the values needed for the new scenario for services with the incorporation of this attention in the PHC.

Introdução: A crescente prevalência das condições crônicas de saúde traz a demanda por Cuidados Paliativos (CP) para a agenda da Atenção Primária á Saúde (APS), gerando questionamentos acerca do impacto da incorporação dos CP sobre os problemas éticos da APS. A bioética não é só reativa, mas precisa reconhecer prospectivamente desafios éticos. Objetivos: Discutir desafios éticos (DE) para incorporação dos CP na APS, considerando o desempenho dos atributos deste âmbito do sistema de saúde na Região de Parelheiros, São Paulo; Cotejar os: problemas éticos dos cuidados paliativos na APS com o Instrumento PCATool-Brasil; problemas éticos dos CP na APS com a avaliação que os profissionais fazem do desempenho dos atributos deste nível do sistema de saúde na Região de Parelheiros, SP; o discurso dos gestores da saúde sobre a atenção às condições crônicas com os problemas éticos dos CP na APS. Método: Estudo de Caso, com múltiplas fontes de dados: entrevistas com profissionais da ESF para aplicação do PCATool-Brasil Versão Profissionais; discursos dos gestores locais sobre a rede de atenção às condições crônicas; resultados de uma scoping review sobre problemas éticos dos CP na APS. As perguntas e os resultados do PCATool foram correlacionadas com os desafios éticos sintetizados a partir dos problemas éticos da scoping review. O cenário de estudo fica na Região Sul da cidade de São Paulo, área com cobertura de ESF em quase 100%, com carência de serviços especializados e alta vulnerabilidade em saúde. Resultados: Os DE foram: o despreparo dos profissionais frente aos CP; a comunicação falha entre os profissionais na rede de atenção à saúde; infraestrutura inadequada para assegurar a continuidade da assistência paliativa por 24 horas; desgaste dos profissionais da APS devido á sobrecarga do trabalho; desconforto para falar sobre CP com o paciente; apoio familiar inapropriado; desconhecimento das Diretivas Antecipadas de Vontade. Considerando o desempenho dos atributos da APS como avaliado pelos profissionais da ESF na Região de Parelheiros, os três primeiros desafios éticos são as áreas de maior tensão ética para a incorporação dos CP na APS. Os discursos dos gestores reconhecem a demanda por CP existente no território, porém, mencionam que as demandas relativas às condições de violência e vulnerabilidades da Região acabam sendo prioritárias pelas urgências que representam. Todos os atributos do PCATool foram relacionados com os desafios éticos indicando que a avaliação do desempenho dos atributos permite reconhecer áreas de tensão ética na releitura feita do Instrumento. Conclusão: Identificando proativamente os DE dessa incorporação, com base na experiência de equipes que já ofertam este serviço e contextualizando-a à realidade local por meio do desempenho dos atributos da APS, torna-se possível confrontá-los com questões éticas correntes na APS, apontando caminhos para os profissionais e gestores com educação continuada, deixando-os mais preparados para o reconhecimento e manejo dos CP, com vistas a fomentar os valores necessários para o novo cenário dos serviços com a incorporação dessa atenção na APS. / Introduction: The increasing prevalence of chronic health conditions brings demand for Palliative Care (PC) to the agenda of Primary Health Care (PHC), raising questions about the impact of the merger of PC on the ethical problems of APS. The bioethics is not only reactive, but must prospectively recognize ethical challenges. Objectives: To discuss ethical challenges (EC) for incorporation of PC in the PHC, considering the performance of the attributes of this part of the health system in Parelheiros Region, São Paulo; Collating: ethical problems of palliative care in PHC with PCATool-Brazil Instrument; ethical problems of PC in the PHC with the assessment that the professionals do the performance attributes of this level of the health system in Parelheiros Region, SP; the discourse of health managers of care for chronic conditions with the ethical problems of PC in the PHC. Method: Case Study with multiple data sources: interviews with Family health strategy (FHS) professionals for the application of PCATool-Brazil Version professionals; speeches by local managers on the network of care for chronic conditions; results of a scopingreview on ethical problems of PC in the PHC. The questions and results of PCATool were correlated with the ethical challenges synthesized from the ethical problems of scopingreview. The study scenario is in the southern region of São Paulo, FHS coverage area with almost 100%, with lack of specialized services and high vulnerability to health. Results: the EC were: the unpreparedness of the professionals in the PC; communication failure among professionals in the health care network; inadequate infrastructure to ensure the continuity of palliative care for 24 hours; wear PHC practitioners due to work overload; discomfort to talk about PC with the patient, familiar support inappropriate; ignorance of the Advance Directives Will. Considering the performance of PHC attributes as evaluated by FHS professionals in Parelheiros Region, the first three ethical challenges are the areas of highest ethical tension to the incorporation of PC in the PHC. The speeches of the managers recognize the demand for PC existing on the territory, however, mention that the demands on the conditions of violence and Region vulnerabilities end up being priority by the urgencies they represent. All PCATool attributes were related to the ethical challenges indicating that the attributes of performance assessment allows us to recognize areas of ethical tension in rereading made the instrument. Conclusion: Identifying proactively the EC this merger, based on the experience of teams that have proffer this service and contextualizing it to local conditions through the performance attributes of the PHC, it is possible to compare them with current ethical issues in PHC, pointing paths for professionals and managers with continuing education, making them more prepared for the recognition and management of PC, designed to promote the values needed for the new scenario for services with the incorporation of this attention in the PHC.

Submitted by Ana Lúcia Torres (bfmhuap@gmail.com) on 2017-10-11T13:39:02Z No. of bitstreams: 2 license_rdf: 0 bytes, checksum: d41d8cd98f00b204e9800998ecf8427e (MD5) DISSERTAÇAO DANIELLE LATGE.pdf: 794878 bytes, checksum: 5cca76d4644dc8468ea35e9fb8e4dc67 (MD5) / Approved for entry into archive by Ana Lúcia Torres (bfmhuap@gmail.com) on 2017-10-11T13:39:16Z (GMT) No. of bitstreams: 2 license_rdf: 0 bytes, checksum: d41d8cd98f00b204e9800998ecf8427e (MD5) DISSERTAÇAO DANIELLE LATGE.pdf: 794878 bytes, checksum: 5cca76d4644dc8468ea35e9fb8e4dc67 (MD5) / Made available in DSpace on 2017-10-11T13:39:16Z (GMT). No. of bitstreams: 2 license_rdf: 0 bytes, checksum: d41d8cd98f00b204e9800998ecf8427e (MD5) DISSERTAÇAO DANIELLE LATGE.pdf: 794878 bytes, checksum: 5cca76d4644dc8468ea35e9fb8e4dc67 (MD5) Previous issue date: 2015 / Universidade Federal Fluminense. Hospital Universitário Antonio Pedro / Corpo de Bombeiros Militar do Estado do Rio de Janeiro / Atualmente, pode-se perceber um crescente aprimoramento na atenção prestada aos recém-nascidos de maneira geral e, de modo particular, aos recém-nascidos prematuros. É nítido o aumento da sobrevida de recém-nascidos, cada vez mais prematuros, em diversos lugares do mundo, incluindo o Brasil, o qual leva a diminuição dos limites de viabilidade. Diante de um cenário incerto, da possibilidade de graves sequelas e de sofrimento para o recém-nascido e sua família, a reanimação na sala de parto de um recém-nascido no limite de viabilidade envolve inúmeras questões bioéticas. Este estudo consistiu numa pesquisa qualitativa, na qual foram realizadas entrevistas semiestruturadas (em anexo) com os médicos da UTI neonatal de um Hospital de Ensino na Região Metropolitana do Rio de Janeiro que realizam salas de parto. Foram analisados aspectos relacionados à prática da assistência neonatal em sala de parto aos recém-nascidos extremamente prematuros, objetivando compreender os fatores associados à conduta médica diante destes recém-nascidos sob a ótica da bioética. O propósito deste trabalho é o de conhecer e analisar os valores éticos e/ou argumentos morais que embasavam a conduta médica ante ao nascimento de um recém-nascido no limite de viabilidade / Currently, it can be seen a growing improvement in the care provided to newborns in general and, particularly, to premature infants. It is clearly increased newborn survival of increasingly premature, in various parts of the world, including Brazil, which leads to decreased viability limit. Faced of an uncertain scenario, the possibility of serious consequences and suffering for the newborn and his/ her family, resuscitation in the delivery room of a newborn in the limit of viability involves numerous ethical issues. This study was a qualitative research in which semi-structured interviews with the doctors at the neonatal ICU of the University Hospital in a Metropolitan Region of Rio de Janeiro, who perform delivery rooms, were realized. There were analyzed practices related to aspects of neonatal care in the delivery room to extremely premature newborn, aiming at understanding the factors associated to medical management before these newborns from a bioethics perspective. The purpose of this work is to understand and analyze the ethical values and / or moral arguments which were based on a medical management before the birth of a newborn in the limit of viability

Cette recherche s’intéresse aux processus communicationnels utilisés dans les comités d’éthique clinique (CEC) en Amérique du nord dans leur fonction de consultation. Selon la littérature, les CEC bénéficieraient de «pay closer attention to group process [as an] effective communication in a HEC is essential to a committee’s function» (Berchelmann and Blechner 2002 p.143). Or, très peu de données sur les dynamiques de groupe et les modes de communication en CEC sont disponibles. Ce travail cherche à savoir si l’approche dialogique peut être utile au soutien des discussions de groupe des CEC. Dans un premier temps, une revue de littérature rend compte, à partir de son historique, de l’état actuel des CEC. Sont ensuite explorées et analysées, dans leurs avantages et leurs limites, les diverses méthodes utilisées afin de mener les discussions dans le cadre des consultations. Dans un deuxième temps, les barrières communicationnelles qui affectent potentiellement les CEC sont identifiées. Par la suite, afin d’améliorer le processus de communication (et diminuer l’effet des barrières), une nouvelle piste de solution est proposée : le dialogue tel que développé par le milieu organisationnel. Le dialogue est alors conceptualisé et mis en lien avec les besoins des CEC en matière de communication. Bien que le dialogue propose plusieurs contributions avantageuses pour les CEC et leurs membres, certaines contraintes réduisent sa faisabilité d’une façon globale dans le contexte particulier des CEC. Par contre, en l’utilisant comme formation complémentaire, le dialogue permet le développement de l’individu et du groupe et demeure une approche intéressante et utile pour les CEC qui éprouvent des difficultés systémiques et comprennent les implications de sa démarche. / This research focuses on communication processes used in hospital ethics committees (HECs) in North America in their consultation role. According to the literature, HECs would benefit if they ―pay closer attention to group process [as an] effective communication in a HEC is essential to a committee’s function‖ (Berchelmann and Blechner 2002 359 p.143). However, very little data on group dynamics and modes of communication are available. This thesis explores whether the dialogical approach may be useful to supporting group discussion in HECs. The first part of this thesis presents a literature review and history to situate the current state of HECs. The various methods used to conduct discussions in ethics consultations are then explored and analyzed, with regards to their advantages and limitations. The second part of the thesis examines communication barriers that potentially affect HECs, and then proposes a possible solution to improve the communication process (and reduce the effect of barriers), that is, the dialogic approach as developed by the organizational setting. This approach is then conceptualized and linked with the communication needs of HECs. Although dialogue can provide several beneficial contributions to HECs and their members, some contextual constraints reduce its feasibility for a comprehensive application. However, using it as a means of additional training, dialogue enables the development of the individual and the group and remains an interesting and useful approach for HECs facing difficulties, and who are able to understand the systemic implications of this approach.

No description available.

Cette recherche s’intéresse aux processus communicationnels utilisés dans les comités d’éthique clinique (CEC) en Amérique du nord dans leur fonction de consultation. Selon la littérature, les CEC bénéficieraient de «pay closer attention to group process [as an] effective communication in a HEC is essential to a committee’s function» (Berchelmann and Blechner 2002 p.143). Or, très peu de données sur les dynamiques de groupe et les modes de communication en CEC sont disponibles. Ce travail cherche à savoir si l’approche dialogique peut être utile au soutien des discussions de groupe des CEC. Dans un premier temps, une revue de littérature rend compte, à partir de son historique, de l’état actuel des CEC. Sont ensuite explorées et analysées, dans leurs avantages et leurs limites, les diverses méthodes utilisées afin de mener les discussions dans le cadre des consultations. Dans un deuxième temps, les barrières communicationnelles qui affectent potentiellement les CEC sont identifiées. Par la suite, afin d’améliorer le processus de communication (et diminuer l’effet des barrières), une nouvelle piste de solution est proposée : le dialogue tel que développé par le milieu organisationnel. Le dialogue est alors conceptualisé et mis en lien avec les besoins des CEC en matière de communication. Bien que le dialogue propose plusieurs contributions avantageuses pour les CEC et leurs membres, certaines contraintes réduisent sa faisabilité d’une façon globale dans le contexte particulier des CEC. Par contre, en l’utilisant comme formation complémentaire, le dialogue permet le développement de l’individu et du groupe et demeure une approche intéressante et utile pour les CEC qui éprouvent des difficultés systémiques et comprennent les implications de sa démarche. / This research focuses on communication processes used in hospital ethics committees (HECs) in North America in their consultation role. According to the literature, HECs would benefit if they ―pay closer attention to group process [as an] effective communication in a HEC is essential to a committee’s function‖ (Berchelmann and Blechner 2002 359 p.143). However, very little data on group dynamics and modes of communication are available. This thesis explores whether the dialogical approach may be useful to supporting group discussion in HECs. The first part of this thesis presents a literature review and history to situate the current state of HECs. The various methods used to conduct discussions in ethics consultations are then explored and analyzed, with regards to their advantages and limitations. The second part of the thesis examines communication barriers that potentially affect HECs, and then proposes a possible solution to improve the communication process (and reduce the effect of barriers), that is, the dialogic approach as developed by the organizational setting. This approach is then conceptualized and linked with the communication needs of HECs. Although dialogue can provide several beneficial contributions to HECs and their members, some contextual constraints reduce its feasibility for a comprehensive application. However, using it as a means of additional training, dialogue enables the development of the individual and the group and remains an interesting and useful approach for HECs facing difficulties, and who are able to understand the systemic implications of this approach.