Encuesta en población abierta respecto a términos relacionados con decisiones al final de la vida / Open population survey regarding terms related to decisions at the end of life

Resumen Introducción: Conceptos relacionados con las decisiones que se toman al final de la vida, como eutanasia, cuidados paliativos, voluntad anticipada y obstinación terapéutica son poco comprendidos por la población en general, que en el momento de enfrentar una situación terminal no está preparada para elegir la mejor opción. Objetivo: Estudio piloto (n = 544) para conocer lo que la población abierta entiende acerca de términos utilizados al final de la vida en cuatro ciudades de la república mexicana. Método: Encuesta vía internet de 18 preguntas sobre los distintos términos. Se trató de un estudio descriptivo, transversal, con análisis estadístico. Resultados: Se eligieron personas mayores de 18 años que no trabajaran en profesiones relacionadas con la salud. Conclusiones: La mayoría de los términos del final de la vida no interesaron ni fueron entendidos por parte de la población. El término menos reconocido fue la obstinación terapéutica (62.8 %) y el más conocido, cuidados paliativos (91 %); se confunden los términos eutanasia y suicidio asistido (47.8 %). La edad y escolaridad resultaron de mayor influencia en los resultados, que las otras variables demográficas.

Abstract Introduction: Concepts related to end-of-life decisions, such as euthanasia, palliative care, advance directives and therapeutic obstinacy, are poorly understood by the general population, which, when facing a terminal situation, is not prepared to choose the best option. Objective: Pilot study (n = 544) to find out what the open population understands about terms used in end-of-life situations in four cities of the Mexican Republic. Method: Survey via Internet with 18 questions about different terms. It was a descriptive, cross-sectional study. Statistical analysis was carried out. Results: People older than 18 years who were not engaged in health-related professional activities were selected. Conclusions: Most terms related to end-of-life decisions were found not to be interesting to or understood by a part of the population. The least recognized term was therapeutic obstinacy (62.8%), and the most widely known, palliative care (91%); there was confusion between the terms euthanasia and assisted suicide (47.8%). Age and education level had more influence in the results, than other demographic variables.

Desafios da implementação das diretivas antecipadas de vontade à prática hospitalar / Desafíos para la implementación de las directivas anticipadas de voluntad en la práctica hospitalaria / Challenges to implementation of advance directives of will in hospital practice

RESUMO Objetivo: conhecer as dificuldades e limitações relacionadas à implementação das Diretivas Antecipadas de Vontade no contexto hospitalar. Método: estudo qualitativo, do tipo descritivo e exploratório, mediante entrevista semiestruturada com enfermeiros, médicos residentes e cuidadores familiares. Os dados foram analisados por meio da técnica de análise textual discursiva e ancorados no referencial dos princípios da bioética. Resultados: emergiram as categorias: A terminalidade como expressão de derrota e a cura como opção para o cuidado? Receios das implicações legais; Diretivas Antecipadas de Vontade requerem autonomia do paciente e adequada comunicação. Conclusão: as limitações e dificuldades atribuídas à prática das diretivas antecipadas de vontade, na perspectiva dos participantes, indicam, além dos inúmeros conflitos e dilemas relacionados às questões de final de vida, que vivências da iminência da morte não têm possibilitado que os desejos dos pacientes sejam respeitados.

RESUMEN Objetivo: conocer dificultades y limitaciones relacionadas a la implementación de las Directivas Anticipadas de Voluntad en el contexto hospitalario. Método: estudio cualitativo, de tipo descriptivo y exploratorio, mediante entrevista semiestructurada con enfermeros, médicos residentes y cuidadores familiares. Los datos fueron analizados por técnica de análisis textual discursivo, y fundamentados en referencial de principios de la bioética. Resultados: surgieron las categorías: ¿La terminalidad como expresión de derrota y la cura como opción para el cuidado? Temores a las implicaciones legales; Las Directivas Anticipadas de Voluntad requieren de autonomía del paciente y de adecuada comunicación. Conclusión: las limitaciones y dificultades atribuidas a la práctica de las directivas anticipadas de voluntad, en la perspectiva de los participantes, indicaron, además de los numerosos conflictos y dilemas relacionados al final de la vida, que las vivencias de la muerte inminente no han permitido que los deseos de los pacientes sean respetados.

ABSTRACT Objective: to understand the difficulties and limitations in the implementation of advance directives of will in the hospital context. Method: qualitative, exploratory and descriptive study conducted by means of semi-structured interviews with nurses, resident physicians and family caregivers. The data were analyzed by using discursive textual analysis based on the framework of bioethics principles. Results: the following categories emerged: Terminality as an expression of loss and cure as an option for care; concerns about legal implications; advance directives of will demand patient autonomy and proper communication. Conclusion: limitations and difficulties in practice of advance directives of will from the perspective of the participants show, apart from countless conflicts and dilemmas regarding end-of life matters, that impending death experiences obstruct patients' wishes.

Experience of Advance Directives in a Hospice Center

To protect patient autonomy when confronting death, the importance of advance directives (ADs) has recently became an issue and gradually accepted in Korea. However, in real practice, ADs were not completed by patients but their families in most cases. To analyze the current situation of performing ADs, we reviewed medical charts of 214 terminal cancer patients admitted to the hospice center from October 2012 to September 2013. Seventy-six (35.5%) patients completed ADs. All ADs were completed by patients themselves. The most common reason for not completing ADs was poor physical and/or mental condition. As a proxy, the majority of patients preferred their spouses (55.3%). Few patients wanted life sustaining treatment (1.3%), however palliative sedation was accepted in 89.5%. The median timing of ADs after admission was three (0-90) days, and duration of survival since ADs was 22 (1-340) days. In conclusion, approximately one third of terminal cancer patients completed ADs by themselves. Considering that patient's poor condition is the main reason for not completing ADs, earlier discussion regarding ADs is necessary to enhance patients' participation.

Experience of Advance Directives in a Hospice Center

To protect patient autonomy when confronting death, the importance of advance directives (ADs) has recently became an issue and gradually accepted in Korea. However, in real practice, ADs were not completed by patients but their families in most cases. To analyze the current situation of performing ADs, we reviewed medical charts of 214 terminal cancer patients admitted to the hospice center from October 2012 to September 2013. Seventy-six (35.5%) patients completed ADs. All ADs were completed by patients themselves. The most common reason for not completing ADs was poor physical and/or mental condition. As a proxy, the majority of patients preferred their spouses (55.3%). Few patients wanted life sustaining treatment (1.3%), however palliative sedation was accepted in 89.5%. The median timing of ADs after admission was three (0-90) days, and duration of survival since ADs was 22 (1-340) days. In conclusion, approximately one third of terminal cancer patients completed ADs by themselves. Considering that patient's poor condition is the main reason for not completing ADs, earlier discussion regarding ADs is necessary to enhance patients' participation.