Análisis de los resultados de un programa de calidad en cuidados paliativos para los óltimos días de vida: Diez aóos de experiencia / Analysis of the results of a palliative care quality program for the last days of life. Ten years of experience

Las secuencias integradas de cuidado para ó;ºltimos días de vida proponen estándares de calidad para optimizar la atenció;n de pacientes y familias. Se implementó; el Programa Asistencial Multidisciplinario Pallium (PAMPA©) basado en estándares del International Collaborative for Best Care for the Dying Person en cuatro fases: inducció;n, implementació;n, diseminació;n y sustentabilidad, en cinco centros de salud en Argentina, entre 2008 y 2018. Se incluyeron 1237 pacientes adultos en situació;n de ó;ºltimos días de vida, en seguimiento por equipos de cuidados paliativos entrenados en el PAMPA©. Se efectuó; una auditoría antes y despuó;©s de la ejecució;n del programa, aó;ºn en curso. El rango de medianas de permanencia en los cinco centros desde el inicio de la secuencia hasta el fallecimiento fue de 16 a 178 horas. Se compararon objetivos de cuidado: control de síntomas, comunicació;n, necesidades multidimensionales, hidratació;n y nutrició;n, documentació;n de intervenciones y cuidados post mortem. El análisis conjunto mostró; una mejoría del nó;ºmero de registros (p = 0.001). La comunicació;n del plan de cuidados con el paciente no mostró; diferencias (p = 0.173). Se realizó; capacitació;n y supervisió;n permanente a los equipos profesionales de quienes se registraron percepciones de la implementació;n. Los principales emergentes de este análisis cualitativo fueron: actitudes ante el programa, aportes fundamentales, fortalezas, debilidades y definició;n subjetiva del programa, reconocimiento de las singularidades culturales institucionales y su influencia en el cuidado. El PAMPA© demostró; la factibilidad de un modelo de atenció;n para pacientes y familias en final de vida, basado en estándares de calidad internacionales.

The integrated care pathways for the last days of life propose quality standards optimizing the care of patients and families. The Pallium Multidisciplinary Assistance Program (PAMPA©) was implemented based on standards of the International Collaborative for Best Care for the Dying Person in 4 phases: induction, implementation, dissemination and sustainability, in five health centres in Argentina, between 2008 and 2018. A total of 1237 adult patients in the last days of life were included and cared for by palliative care teams trained in PAMPA©. An audit was conducted before and after the implementation of the Program, which is still going on. The median range of follow up into five centres from the beginning of the pathway until death varied from 16 to 178 hours. Care goals were compared: symptom control, communication, multidimensional needs, hydration and nutrition, documentation of interventions and post-mortem care. The overall analysis showed an improvement in the number of records (p = 0.001). The goal of communication on care plan to the patient showed no difference (p = 0.173). Continuous training, support and permanent teams supervision were carried out and perceptions and impact of the implementation were registered. The main emerging items of the qualitative analysis were: attitudes towards the program, fundamental contributions, strengths, weaknesses and subjective definition of the program, recognition of institutional cultural singularities and its influence on care. PAMPA© demonstrated its feasibility as a model of end of life care for patients and families, based on international quality standards.

Problemas y decisiones al final de la vida en pacientes con enfermedad en etapa terminal / Terminally-ill patients' end of life problems and related decisions

Objetivos Describir preferencias en las decisiones al final de la vida en pacientes y familiares, problemas que subyacen y motivos que los llevan a solicitar apoyo. Métodos Estudio descriptivo, exploratorio de fuentes secundarias de una ONG que brinda apoyo a los pacientes al final de la vida. Resultados La opción más frecuente fue la muerte digna en 43 % seguida de la eutanasia en un 12 %. Un 22 % de las personas solicitaban orientación sobre aspectos éticos y legales y además referentes a la atención adecuada para enfermos terminales. Las patologías que ocuparon el 75 % de los diagnósticos fueron Enfermedad Crónica Degenerativa, Cáncer y Estado de Coma. La agudización de síntomas fue el principal motivo por el cual solicitaron apoyo y el dolor incontrolable llevó con más frecuencia a la opción por la eutanasia. Sólo 14 % de los pacientes habían formalizado sus voluntades anticipadas respecto al final de la vida. La opción de muerte digna se relacionó con el rechazo a medidas fútiles y al encarnizamiento terapéutico. La eutanasia se percibió como acción intencional y autónoma de poner fin al sufrimiento. La familia juega un papel esencial en la toma de decisiones. Conclusiones Las decisiones al final de la vida son motivadas por la percepción de unas condiciones no dignas debidas al deterioro progresivo, dolor mal controlado, abandono del paciente crónico, encarnizamiento terapéutico y uso de medidas innecesarias que posponen la muerte. Se toman en un contexto complejo de dilemas religiosos, éticos y legales.

Objectives Describing terminally-ill patients and their relatives' preferences regarding end of life decisions, the underlying problems and reasons leading to them requesting support. Methods This was a descriptive, exploratory analysis of the secondary sources in an NGO providing support for patients at the end of their lives. Results The most frequent choice was dying with dignity (43 %), followed by euthanasia (12 %). Some people asked for guidance on legal and ethical aspects regarding appropriate care for the terminally-ill. The pathologies accounting for 75 % of the diagnoses were chronic degenerative diseases, cancer and coma. The worsening of symptoms was the main reason for requesting support and uncontrollable pain more often led to the choice of euthanasia. Only 14 % of the patients had formalised their wills regarding their end of life decisions. The choice of dying with dignity was related to rejecting futile measures and therapeutic cruelty. Euthanasia was seen as an autonomous intentional action to end suffering. The family plays an essential role in making end of life decisions. Conclusions End of life decisions are motivated by a perception of undignified conditions for patients due to progressive deterioration, poorly controlled pain, abandoning of chronic patients, therapeutic obstinacy and unnecessary measures that postpone death. They are taken within a complex context concerning religious dilemmas and ethical or legal concerns.

A música na terminalidade humana: concepções dos familiares / Music in human terminality: the family members' conceptions / La música en pacientes terminales: concepciones de los familiares

Estudo qualitativo que utilizou a estratégia metodológica do estudo de casos múltipos e a fenomenologia existencial heideggeriana para analisar os dados. O objetivo foi compreender como os familiares percebem a influência das vivências musicais na saúde física e mental de um familiar que experiencia a terminalidade. Os dados foram coletados junto a sete indivíduos pertencentes a duas famílias por meio de entrevista e observação em maio e junho de 2009. Os resultados mostraram que a utilização da música no cuidado dos seres que vivenciam o câncer pode proporcionar bem-estar aos pacientes e cuidadores. Considerando-se o déficit de lazer e a monotonia do ambiente domiciliar, a utilização da música contempla os preceitos filosóficos e humanitários dos cuidados paliativos, caracterizando-se como um recurso complementar no cuidado de enfermagem, pois além de constituir um recurso de comunicação, promove melhor relacionamento interpessoal entre o doente e sua família.

This qualitative study was performed using the multiple case study method and Heidegger's existential phenomenology for data analysis. The objective was to understand how family members perceive the influence of musical experiences on the physical and mental health of a relative living with a terminal illness. Participants were seven individuals belonging to two families. Data collection was performed through interviews and observation from May to June 2009. Results showed that using music while providing care to beings living with cancer can provide well-being to patients as well as their caregivers. Considering the deficit of leisure and the monotony of the home environment, using music contemplates the philosophical and humanitarian precepts of palliative care, thus being characterized as a complementary resource to nursing care, as besides being a communication resource, it improves the interpersonal relationship between patients and their families.

Estudio cualitativo que utilizó la estrategia metodológica del estudio de casos múltiple y la fenomenología existencial heideggeriana para analizar los datos. El objetivo fue comprender el modo en que los familiares perciben la influencia de las experiencias musicales en la salud física y mental de un familiar en estado terminal. Los datos fueron recolectados en mayo y junio de 2009, junto a siete individuos pertenecientes a dos familias, a través de entrevistas y observación. Los resultados mostraron que la utilización de música en el cuidado de los pacientes de cáncer puede proporcionarles bienestar, tanto a los pacientes como a sus cuidadores. Considerándose el déficit de placer y la monotonía del ámbito domiciliario, la utilización de la música contempla los preceptos filosóficos y humanitarios de los cuidados paliativos, caracterizándose como un recurso complementario en el cuidado de enfermería, pues más allá de constituir un recurso de comunicación, promueve una mejor relación interpersonal entre el enfermo y su familia.

Avaliação dos óbitos ocorridos no Hospital Universitário da Universidade Federal de Santa Catarina (HU/UFSC) / Evaluation of deaths occurred at the University Hospital (HU/UFSC)

OBJETIVO: Avaliar os óbitos ocorridos no HU/UFSC. Comparar o perfil dos pacientes que morreram nas enfermarias com o daqueles que morreram na UTI. Verificar se os óbitos foram considerados esperados (E) e não evitáveis (NE). Constatar se houve recusa/suspensão de terapêutica (RST) precedendo a morte. MÉTODOS: Obtivemos dados por meio de ficha elaborada pela Comissão de Óbito Hospitalar (COH), na qual constavam os aspectos demográficos, clínicos e terapêuticos dos pacientes e a avaliação da COH sobre a expectativa/evitabilidade dos óbitos. RESULTADOS: Analisamos os dados dos 326 pacientes com mais de 14 anos, que morreram entre julho/2004 e dezembro/2005. Desses, 128 morreram na UTI (G1) e 198 nas enfermarias (G2). A RST precedeu 38,2 por cento dos óbitos no G1 e 2 por cento no G2 (p<0,001). As principais terapêuticas recusadas/suspensas foram drogas vasoativas e antibióticos. No G1 cerca de 20 por cento das mortes foi classificada como E/NE. No G2 considerou-se 5 por cento das mortes evitáveis e 6,5 por cento não esperadas (p<0,001). Os pacientes do G1 eram mais jovens e do sexo masculino (p<0,005). A ordem de não reanimar constava em 48,4 por cento dos prontuários do G2 e em 6,3 por cento do G1(p<0,001). Manobras de reanimação cardiorrespiratória (RCR) ocorreram em 23,4 por cento no G1 e em 5,5 por cento no G2(p<0,001). CONCLUSÃO: Na UTI, os pacientes que morreram eram mais jovens, receberam mais DVA e os óbitos foram mais freqüentemente precedidos da RST. Houve reanimação cardiorrespiratória em 5 por cento das PCR nas enfermarias onde se constatou ordem de não reanimar em 48 por cento dos prontuários. Poucos óbitos foram considerados E/NE. Não houve indícios de erro profissional ou institucional nesses óbitos.

OBJECTIVE: To evaluate the deaths which occurred at the HU/UFSC. To compare the profile of patients who died in the wards with that of patients who died in the ICU. To classify deaths which were expected or not, and avoidable or not. To verify how often withholding or withdrawing (WW) therapy preceded death. METHODS: Archives of the Hospital Death Commission (HDC) were analyzed. The clinical and demographic records were retrieved from the HDC data bank. Deaths were classified by the HDC as expected or not and avoidable or not. RESULTS: Data from 326 dead persons over 14 years of age were analyzed. One hundred and twenty eight deaths occurred in the ICU (G1) and 198 in the wards (G2). WW therapy preceded 38.2 percent of deaths in G1 and 2 percent in G2 (p<0.001). The main WW therapies were vasoactive drugs and antibiotics. Almost 20 percent of deaths were unexpected/avoidable in G1. In G2 6.5 percent were considered unexpected and 5 percent avoidable (p<0.005). Patients in G1 were younger and mostly male (p<0.005). Do-not-resuscitate orders were registered in 48.4 percent of patients' medical charts in G2 and 6.3 percent in G1 (p<0.001). Cardiopulmonary resuscitation was performed in 23.4 percent of patients in G1 and in 5.5 percent in G2 (p<0.001). CONCLUSION: In G1, patients were younger and deaths were more frequently preceded by WW. In G2, half of the patients had do-not-resuscitate order registered in their medical charts. In only a few patients were deaths considered unexpected or avoidable. No evident professional or institutional error was identified.