SAMMANFATTNING Syftet med föreliggande studie var att undersöka dialyssjuksköterskors upplevelse i mötet med en patient som vill avsluta, eller som inte är kapabel att uttrycka sig kring, sin livsuppehållande dialysbehandling. En deskriptiv intervjustudie med kvalitativ ansats utfördes på två dialysmottagningar i Mellansverige. Innehållsanalys av intervjuerna genomfördes vilket gav fem huvudkategorier; sjuksköterskors upplevelse av bristfällig kommunikation och samarbete med läkare, sjuksköterskors upplevelse av läkares svårigheter att diskutera avslutande av dialysbehandling, sjuksköterskors upplevelse av att vårda patienter som inte är kapabla att uttrycka sig kring sin dialysbehandling, sjuksköterskors upplevelse av att vårda patienter som säger, eller på något annat sätt uttrycker, att de vill avsluta sin dialysbehandling och sjuksköterskors upplevelse av stöd och samtal i vården kring patienter som vill avsluta sin dialysbehandling. Huvudresultatet visar att dialyssjuksköterskor upplever många etiska dilemman i mötet med denna patientgrupp. Mötet med en patient som säger, eller på något annat sätt uttrycker att de vill avsluta behandlingen upplevdes positivt, dock upplevdes innebörden av uttrycken ibland vara svåra att tolka. Sjuksköterskorna upplevde det många gånger frustrerande att vårda en patient som inte är kapabel att uttrycka sin vilja om fortsatt eller avslutande dialysbehandling. Slutsatsen var att ytterligare forskning inom detta område är nödvändig för att rutiner och riktlinjer skall kunna utformas. / ABSTRACT The aim of the study was to investigate the dialysis nurses' experience of meeting with a patient who wants to end, or a patient who is not able to express itself about, its life-sustaining dialysis treatment. A descriptive interview study with qualitative approach was used on two dialysis centers in central Sweden. Content analysis of the interviews were conducted which resulted in five main categories: nurses' experience of poor communication and cooperation with physicians, nurses' experience of physician's difficulty to discuss the closure of the dialysis treatment, nurses' experience of caring for patients who are unable to express themselves about their dialysis treatment, nurses' experience of caring for patients saying, or otherwise expressing, that they want to end their dialysis treatment and nurses' experience of support and conversations in health care, around patients who want to end their dialysis treatment. The main result shows that dialysis nurses experience many ethical dilemmas facing these patients. The meeting with a patient saying, or otherwise expressing, that they want to end their dialysis treatment was perceived positively, however, could the meaning of the expression sometimes be difficult to interpret. The nurses, often times, felt frustrating to care for a patient who is unable to express themselves about their dialysis treatment. The conclusion was that further research in this area is necessary so that procedures and guidelines can be designed.

Given the unprecedented medical progress combined with longer life expectancies, the right to die has become one of the main contemporary social issues. The objective of the thesis titled "The Right to Die in Light of European System of Protection of Human Rights" is to present conclusions in following matters: inclusion of the right to die in European human rights system and addressing the right to die before the European Court on Human Rights. Though the right to die can take on many forms, two basic categories of such are euthanasia and assisted suicide on one hand and withdrawal of treatment on the other. First of all, the thesis is concerned with characteristics of individual forms of the right to die. It focuses primarily on the difference between those two categories i.e. the intention of the action, for such distinction forms the basis of the European system of protection of the right to die as well as ECHR case-law. The right to die is provided for by the European human rights system to some extent. The thesis therefore focuses on the most important European acts pertinent to this area. Neither European Convention on Human Rights nor Convention on Human Rights and Biomedicine establishes the right to die explicitly, yet several forms can be derived by interpreting them. Conversely, the...

Introdução: Desde a década de 70, a limitação de suporte de vida vem sendo discutida como uma forma de oferecer uma morte digna a pacientes fora de possibilidades terapêuticas. A tomada de decisão de limitação terapêutica, quando não compartilhada por toda a equipe assistencial, pode se refletir em desconforto para os cuidadores, que devem executar a assistência conforme planejado, mesmo nem sempre concordando com as decisões tomadas. Esse desconforto pode ser reflexo de percepção de coerção, nem sempre manifesta. Objetivo: o objetivo da pesquisa foi avaliar a expressão de coerção de cuidadores frente à assitência a pacientes pediátricos terminais, em limitação de tratamento. Material e métodos: através de estudo transversal e prospectivo, foi avaliada a expressão de coerção dos enfermeiros, médicos e técnicos de enfermagem que assistiram pacientes terminais, no período de um ano, utilizando-se a Subescala de Voz da MacArthur Admission Experience Survey modificada, solicitando concordância ou discordância a 4 sentenças. Na análise estatística foram realizados os testes de qui-quadrado com correlação de Pearson e o teste de comparações múltiplas de proporções com correção de Bonferroni. Foram utilizados o sistema SPSS v.18 e WINPEPI v.10.11. O nível de significância estabelecido foi de 5% (P<0,05). Resultados: foram analisados 227 questionários de Expressão de Coerção, relativos à assistência de 17 pacientes pediátricos terminais, no período de 2009 e 2010. Houve expressão de coerção em 17% dos questionários dos médicos, 72% dos enfermeiros (p<0,00001) e 76% dos técnicos (p<0,00001). Não houve diferença significativa de Expressão de Coerção entre enfermeiros e técnicos de enfermagem. Com relação às sentenças, houve expressão de coerção em todas, em taxas variadas, nas diferentes categorias de cuidadores. Na sentença ―Tive oportunidade suficiente de dizer se concordava com a limitação terapêutica ou não-ressuscitação‖ houve diferença significativa entre médicos e enfermeiros (p=0,004) e entre médicos e técnicos (p<0,001). Na sentença ―Tive oportunidade de dizer o que queria a respeito da limitação terapêutica ou não-ressuscitação‖ houve diferença significativa entre médicos e enfermeiros (p=0,005 ) e entre médicos e técnicos (p<0,002). Não houve diferença entre as equipes nas demais sentenças. Conclusão: a pesquisa evidenciou expressão de coerção nas três categorias de cuidadores de pacientes pediátricos terminais em limitação de tratamento, sendo os médicos os que expressaram menor coerção. Dentre os itens de expressão de coerção, os relacionados à expressão de opinião foram os mais apontados, principalmente entre os enfermeiros e técnicos de enfermagem. / Introduction: Limitation of life support is considered a means of providing dignified death to patients who are beyond any therapeutic possibility. The decision to limit life support should be shared among patients, their relatives, and their care providers. Health professionals caring for terminally or intractably ill children under limited life support may feel coerced, particularly when they were not involved in decision making for end-of-life care. In order to understand the feelings of these care providers, it is important that this perceived coercion be expressed and measured with valid instruments. Objective: The objective of this study is to evaluate expression of perceived coercion by nurses, physicians, and nurse technicians during limitation of life support among terminal patients treated at the pediatric intensive care unit (PICU) of a tertiary hospital, quantify this expression of coercion, and compare it across the three aforementioned categories of caregivers. Methods: This prospective study used the three-item Voice subscale of the MacArthur Admission Experience Survey, modified by the addition of a fourth statement regarding ―validation,‖ to quantify expression of perceived coercion by the health professionals involved in the care of 17 patients who were under limitation of life support during the study period. The chi-square test with Pearson correlation and multiple comparisons with Bonferroni correction were used for statistical analysis. The significance level was set at 5%. Results: Overall, 10 nurses, 41 nurse technicians, and 23 physicians (65% of eligible healthcare providers) took part in the study. A total of 227 Coercion Expression questionnaires were completed, 121 by physicians, 50 by nurses, and 56 by nurse technicians, for a return rate of 65%, 61%, and 52% respectively. There was a significant difference in rate of return between physicians and nurse technicians (p=0.0258). Providers in all three categories expressed coercion to varying degrees. Analysis by Pearson's chi-squared test revealed that coercion was expressed significantly more by nurses and nurse technicians than by physicians (p<0.00001 for both comparisons). There was no significant difference between nurses and nurse technicians (p=0.7016). Coercion was reported for all items by caregivers in all three categories. There were significant differences between physicians and nurses and between physicians and nurse technicians in two of the three items concerning ―Voice‖ (p<0.005). There was no significant difference among providers for one of the ―Voice‖ items or for the ―Validation‖ item. Conclusion: This study revealed variable rates of coercion expression across three categories of healthcare providers involved in the end-of-life care of pediatric patients under limitation of life support, with physicians manifesting the least perceived coercion. Among the four items on coercion expression evaluated in this study, those related to expression of one‘s opinion—an essential element of decision-making—were the ones most commonly mentioned, particularly by nurses and nurse technicians.

Introdução: Desde a década de 70, a limitação de suporte de vida vem sendo discutida como uma forma de oferecer uma morte digna a pacientes fora de possibilidades terapêuticas. A tomada de decisão de limitação terapêutica, quando não compartilhada por toda a equipe assistencial, pode se refletir em desconforto para os cuidadores, que devem executar a assistência conforme planejado, mesmo nem sempre concordando com as decisões tomadas. Esse desconforto pode ser reflexo de percepção de coerção, nem sempre manifesta. Objetivo: o objetivo da pesquisa foi avaliar a expressão de coerção de cuidadores frente à assitência a pacientes pediátricos terminais, em limitação de tratamento. Material e métodos: através de estudo transversal e prospectivo, foi avaliada a expressão de coerção dos enfermeiros, médicos e técnicos de enfermagem que assistiram pacientes terminais, no período de um ano, utilizando-se a Subescala de Voz da MacArthur Admission Experience Survey modificada, solicitando concordância ou discordância a 4 sentenças. Na análise estatística foram realizados os testes de qui-quadrado com correlação de Pearson e o teste de comparações múltiplas de proporções com correção de Bonferroni. Foram utilizados o sistema SPSS v.18 e WINPEPI v.10.11. O nível de significância estabelecido foi de 5% (P<0,05). Resultados: foram analisados 227 questionários de Expressão de Coerção, relativos à assistência de 17 pacientes pediátricos terminais, no período de 2009 e 2010. Houve expressão de coerção em 17% dos questionários dos médicos, 72% dos enfermeiros (p<0,00001) e 76% dos técnicos (p<0,00001). Não houve diferença significativa de Expressão de Coerção entre enfermeiros e técnicos de enfermagem. Com relação às sentenças, houve expressão de coerção em todas, em taxas variadas, nas diferentes categorias de cuidadores. Na sentença ―Tive oportunidade suficiente de dizer se concordava com a limitação terapêutica ou não-ressuscitação‖ houve diferença significativa entre médicos e enfermeiros (p=0,004) e entre médicos e técnicos (p<0,001). Na sentença ―Tive oportunidade de dizer o que queria a respeito da limitação terapêutica ou não-ressuscitação‖ houve diferença significativa entre médicos e enfermeiros (p=0,005 ) e entre médicos e técnicos (p<0,002). Não houve diferença entre as equipes nas demais sentenças. Conclusão: a pesquisa evidenciou expressão de coerção nas três categorias de cuidadores de pacientes pediátricos terminais em limitação de tratamento, sendo os médicos os que expressaram menor coerção. Dentre os itens de expressão de coerção, os relacionados à expressão de opinião foram os mais apontados, principalmente entre os enfermeiros e técnicos de enfermagem. / Introduction: Limitation of life support is considered a means of providing dignified death to patients who are beyond any therapeutic possibility. The decision to limit life support should be shared among patients, their relatives, and their care providers. Health professionals caring for terminally or intractably ill children under limited life support may feel coerced, particularly when they were not involved in decision making for end-of-life care. In order to understand the feelings of these care providers, it is important that this perceived coercion be expressed and measured with valid instruments. Objective: The objective of this study is to evaluate expression of perceived coercion by nurses, physicians, and nurse technicians during limitation of life support among terminal patients treated at the pediatric intensive care unit (PICU) of a tertiary hospital, quantify this expression of coercion, and compare it across the three aforementioned categories of caregivers. Methods: This prospective study used the three-item Voice subscale of the MacArthur Admission Experience Survey, modified by the addition of a fourth statement regarding ―validation,‖ to quantify expression of perceived coercion by the health professionals involved in the care of 17 patients who were under limitation of life support during the study period. The chi-square test with Pearson correlation and multiple comparisons with Bonferroni correction were used for statistical analysis. The significance level was set at 5%. Results: Overall, 10 nurses, 41 nurse technicians, and 23 physicians (65% of eligible healthcare providers) took part in the study. A total of 227 Coercion Expression questionnaires were completed, 121 by physicians, 50 by nurses, and 56 by nurse technicians, for a return rate of 65%, 61%, and 52% respectively. There was a significant difference in rate of return between physicians and nurse technicians (p=0.0258). Providers in all three categories expressed coercion to varying degrees. Analysis by Pearson's chi-squared test revealed that coercion was expressed significantly more by nurses and nurse technicians than by physicians (p<0.00001 for both comparisons). There was no significant difference between nurses and nurse technicians (p=0.7016). Coercion was reported for all items by caregivers in all three categories. There were significant differences between physicians and nurses and between physicians and nurse technicians in two of the three items concerning ―Voice‖ (p<0.005). There was no significant difference among providers for one of the ―Voice‖ items or for the ―Validation‖ item. Conclusion: This study revealed variable rates of coercion expression across three categories of healthcare providers involved in the end-of-life care of pediatric patients under limitation of life support, with physicians manifesting the least perceived coercion. Among the four items on coercion expression evaluated in this study, those related to expression of one‘s opinion—an essential element of decision-making—were the ones most commonly mentioned, particularly by nurses and nurse technicians.

Introdução: Desde a década de 70, a limitação de suporte de vida vem sendo discutida como uma forma de oferecer uma morte digna a pacientes fora de possibilidades terapêuticas. A tomada de decisão de limitação terapêutica, quando não compartilhada por toda a equipe assistencial, pode se refletir em desconforto para os cuidadores, que devem executar a assistência conforme planejado, mesmo nem sempre concordando com as decisões tomadas. Esse desconforto pode ser reflexo de percepção de coerção, nem sempre manifesta. Objetivo: o objetivo da pesquisa foi avaliar a expressão de coerção de cuidadores frente à assitência a pacientes pediátricos terminais, em limitação de tratamento. Material e métodos: através de estudo transversal e prospectivo, foi avaliada a expressão de coerção dos enfermeiros, médicos e técnicos de enfermagem que assistiram pacientes terminais, no período de um ano, utilizando-se a Subescala de Voz da MacArthur Admission Experience Survey modificada, solicitando concordância ou discordância a 4 sentenças. Na análise estatística foram realizados os testes de qui-quadrado com correlação de Pearson e o teste de comparações múltiplas de proporções com correção de Bonferroni. Foram utilizados o sistema SPSS v.18 e WINPEPI v.10.11. O nível de significância estabelecido foi de 5% (P<0,05). Resultados: foram analisados 227 questionários de Expressão de Coerção, relativos à assistência de 17 pacientes pediátricos terminais, no período de 2009 e 2010. Houve expressão de coerção em 17% dos questionários dos médicos, 72% dos enfermeiros (p<0,00001) e 76% dos técnicos (p<0,00001). Não houve diferença significativa de Expressão de Coerção entre enfermeiros e técnicos de enfermagem. Com relação às sentenças, houve expressão de coerção em todas, em taxas variadas, nas diferentes categorias de cuidadores. Na sentença ―Tive oportunidade suficiente de dizer se concordava com a limitação terapêutica ou não-ressuscitação‖ houve diferença significativa entre médicos e enfermeiros (p=0,004) e entre médicos e técnicos (p<0,001). Na sentença ―Tive oportunidade de dizer o que queria a respeito da limitação terapêutica ou não-ressuscitação‖ houve diferença significativa entre médicos e enfermeiros (p=0,005 ) e entre médicos e técnicos (p<0,002). Não houve diferença entre as equipes nas demais sentenças. Conclusão: a pesquisa evidenciou expressão de coerção nas três categorias de cuidadores de pacientes pediátricos terminais em limitação de tratamento, sendo os médicos os que expressaram menor coerção. Dentre os itens de expressão de coerção, os relacionados à expressão de opinião foram os mais apontados, principalmente entre os enfermeiros e técnicos de enfermagem. / Introduction: Limitation of life support is considered a means of providing dignified death to patients who are beyond any therapeutic possibility. The decision to limit life support should be shared among patients, their relatives, and their care providers. Health professionals caring for terminally or intractably ill children under limited life support may feel coerced, particularly when they were not involved in decision making for end-of-life care. In order to understand the feelings of these care providers, it is important that this perceived coercion be expressed and measured with valid instruments. Objective: The objective of this study is to evaluate expression of perceived coercion by nurses, physicians, and nurse technicians during limitation of life support among terminal patients treated at the pediatric intensive care unit (PICU) of a tertiary hospital, quantify this expression of coercion, and compare it across the three aforementioned categories of caregivers. Methods: This prospective study used the three-item Voice subscale of the MacArthur Admission Experience Survey, modified by the addition of a fourth statement regarding ―validation,‖ to quantify expression of perceived coercion by the health professionals involved in the care of 17 patients who were under limitation of life support during the study period. The chi-square test with Pearson correlation and multiple comparisons with Bonferroni correction were used for statistical analysis. The significance level was set at 5%. Results: Overall, 10 nurses, 41 nurse technicians, and 23 physicians (65% of eligible healthcare providers) took part in the study. A total of 227 Coercion Expression questionnaires were completed, 121 by physicians, 50 by nurses, and 56 by nurse technicians, for a return rate of 65%, 61%, and 52% respectively. There was a significant difference in rate of return between physicians and nurse technicians (p=0.0258). Providers in all three categories expressed coercion to varying degrees. Analysis by Pearson's chi-squared test revealed that coercion was expressed significantly more by nurses and nurse technicians than by physicians (p<0.00001 for both comparisons). There was no significant difference between nurses and nurse technicians (p=0.7016). Coercion was reported for all items by caregivers in all three categories. There were significant differences between physicians and nurses and between physicians and nurse technicians in two of the three items concerning ―Voice‖ (p<0.005). There was no significant difference among providers for one of the ―Voice‖ items or for the ―Validation‖ item. Conclusion: This study revealed variable rates of coercion expression across three categories of healthcare providers involved in the end-of-life care of pediatric patients under limitation of life support, with physicians manifesting the least perceived coercion. Among the four items on coercion expression evaluated in this study, those related to expression of one‘s opinion—an essential element of decision-making—were the ones most commonly mentioned, particularly by nurses and nurse technicians.