Propiedades psicométricas de una escala para evaluar las actitudes de enfermería hacia el cuidado al final de la vida en Colombia: la escala FATCOD-S / Psychometric Properties of a Scale to Assess Nursing Attitudes Toward Care at the End of Life in Colombia: The FATCOD-s Scale / Propriedades psicométricas de uma escala para avaliar as atitudes da enfermagem em relação aos cuidados no fim da vida na Colômbia: a escala FATCOD-s

Introducción: el personal de enfermería afronta el cuidado de personas con enfermedades que amenazan la vida. Este artículo examina las propiedades psicométricas de una escala que evalúa actitudes ante el cuidado en fin de vida (fATCOD-S) en profesionales de enfermería que atienden a pacientes oncológicos y busca determinar la relación entre sus actitudes y sus características sociodemográficas y relacionadas con el entrenamiento. Materiales y métodos: estudio cuantitativo de diseño transversal. Los participantes trabajaban en servicios oncológicos de tres instituciones sanitarias de Medellín (Colombia) y hacían parte de un grupo de interés académico. Se empleó el fATCOD-S, y se recogieron variables socio- demográficas y relacionadas con la formación. Se analizaron los componentes principales, así como la confiabilidad, y se obtuvieron estadísticos descriptivos y comparativos. Resultados: 83 participantes con una mediana de edad de 34 años (RIQ: 7), de los cuales el 96.3 % eran mujeres; el 51.2 % laboraban en hospitalización; el 31.7 % tenían menos de dos años en el servicio, y el 35.4 %, con dos a cinco años de experiencia cuidando pacientes oncológicos. El fATCOD-S mostró propiedades psicométricas robustas y el puntaje promedio obtenido fue de 87.6 (desviación estándar: 8.2). Actitudes más favorables hacia la familia y la experiencia de morir se relacionaron con el entrenamiento y la experiencia profesional. Conclusión: las actitudes de los profesionales de enfermería hacia el cuidado en fin de vida tienden a ser muy favorables y se asocian con el tipo de entrenamiento y la experiencia profesional.

Introduction: Nursing staff must cope with the complexities of caring for people with life-threatening illnesses. This study aimed to examine the psychometric characteristics of the Colombian version of the Frommelt Scale (fATCOD-S) and determine the relationship between fATCOD-S scores and sociodemographic and training-related variables. Materials and methods: Nursing professionals working oncological services of three healthcare institutions in Medelln (Colombia) and those participating in an academic interest group were invited to participate in this quantitative cross-sectional study. Sociodemographic and training-related variables were collected, and fATCOD-S was administered. A principal component analysis was conducted, and Cronbach's alpha was obtained. Descriptive and comparative statistics were also obtained. Results: Overall, 83 nurses were enrolled, with a median age of 34 (interquartile range, 7) years. Among them, 96.3% were women, 51.2% worked in hospitals, 31.7% worked <2 years in the service, and 35.4% had 2­5 years of experience in caring for patients with cancer. fATCOD-S showed solid psychometric properties, and its total average score was 87.6 (standard deviation 8.2). Positive attitudes toward family and experiences with dying were related to training and professional experience. Conclusions: The attitudes of the participating nursing professionals toward palliative care for patients at the end of life tend to be very positive and are associated with their type of training and professional experience. Academic nursing programs should encourage training in caring attitudes toward dying, which in time fosters the wellbeing of the staff and their patients.

Introdução: a equipe de enfermagem se depara frequentemente com o cuidado de pessoas com doenças que ameaçam a vida. Este estudo examina as propriedades psicométricas de uma escala para avaliar as atitudes de profissionais de enfermagem que cuidam de doentes oncológicos terminais (fATCOD-S) e procura determinar a relação entre as suas atitudes e as suas características sociodemográficas e forma- tivas. Materiais e métodos: estudo quantitativo, delineamento transversal. Os participantes trabalhavam em serviços oncológicos em três instituições de saúde de Medellín (Colômbia) e faziam parte de um grupo de interesse acadêmico. Foi utilizado o fATCOD-S, coletadas variáveis sociodemográficas e relacionadas ao treinamento. Foi realizada uma Análise de Componentes Principais (PCA), bem como uma análise de confiabilidade e estatísticas descritivas e comparativas foram obtidas. Resultados: n = 83, mediana de idade 34 anos (IQR: 7), 96,3% mulheres, 51,2% trabalhavam em internação, 31,7% tinham menos de dois anos no serviço e 35,4% com experiência de dois a cinco anos no atendimento a pacientes oncológicos. O fATCOD-S apresentou propriedades psicométricas robustas e a pontuação média obtida foi de 87,6 (DP 8,2). Atitudes mais favoráveis em relação à família e à experiência de morrer relacionaram-se à formação e à experiência profissional. Conclusão: as atitudes dos profissionais de enfermagem face aos cuidados de fim de vida tendem a ser muito favoráveis e estão associadas ao tipo de formação e experiência profissional. Os programas acadêmicos devem promover sua capacitação nesses aspectos, com vistas a favorecer o bem-estar de funcionários e pacientes

Investigation and comparative study on death cognition and hospice care attitude of the graduate students of clinical medicine / 中华医学教育探索杂志

Objective:To investigate and analyze the status quo of death cognition and hospice care attitude of clinical medical graduate students, to compare the differences between the two groups, and to explore the correlation between death cognition and hospice care attitude, so as to provide the reference for the reform and construction of death cognition and hospice care education in medical colleges and universities in China.Methods:A survey was carried out on 496 doctoral and postgraduate students majoring in clinical medicine by using the "Questionnaire of General Sociology Survey", the Chinese version of the "Death Attitude Profile Revised Scale", and the Chinese version of the "Frommelt Attitudes Toward Care of the Dying Scale Form B (FATCOD-B)" to investigate the death cognition and hospice care attitude of 496 doctoral and postgraduate students majoring in clinical medicine, and classified and compared the survey results of the two groups. The results of this study were statistically analyzed by t-test, Pearson correlation analysis and other statistical methods. Results:A total of 469 valid questionnaires were recovered after excluding 27 unqualified questionnaires. Statistical analysis showed that the scores of each dimension in the death attitude description scale of doctoral students were ranked as follows: approach acceptance (4.28±0.53), neutral acceptance (3.99±0.41), death avoidance (2.74±0.63), fear of death (2.65±0.57) and escape acceptance (2.47±0.69) the scores of postgraduates were ranked as neutral acceptance (3.96±0.52), approach acceptance (2.84±0.61), fear of death (2.78±0.65), death escape (2.62±0.73), escape acceptance (2.39±0.77). At the same time, the scores of hospice care attitude in the doctoral group were higher than those in the master group [(110.63±8.96) vs. (106.78±6.52)], and the difference was statistically significant ( P<0.001). In addition, the scores of "fear of death" and the scores of hospice care attitudes were negatively correlated with the scores of doctoral and master students ( r=-0.25, r=-0.21), while the scores of hospice care attitudes were positively correlated with the scores of "neutral acceptance" in death cognition ( r=0.50, r=0.32). However, the hospice care attitude scores of doctoral students were negatively correlated with the "death avoidance" scores in death cognition ( r=-0.27). Conclusion:Doctoral and postgraduate students have a certain awareness of hospice care, while their death cognition and hospice care attitude still need to be improved and strengthened from sociology, psychology, ethics and other perspectives. The above will promote the harmony between doctors and patients while meeting the needs of an aging society in China.

The development of the course of end-of-life care education in medical colleges and universities at home and abroad: a scoping review / 中华医学教育探索杂志

The end-of-life care education of medical students is related to the development of hospice care in the future. This paper comprehensively reviewed the setting up situations of end-of-life care education courses at home and abroad, as well as the status quo of courses' implementation, including teaching contents, teaching methods, assessment methods, teaching staff, teaching evaluations and effects. Based on these aspects, we have made some thoughts and suggestions, in order to provide reference for the development of end-of-life care education courses in medical colleges and universities in China.

Construction of training program system for hospice care volunteers / 中国实用护理杂志

Objective:To construct the training program system for hospice care volunteers and provide reference for the training of hospice care volunteers in China.Methods:The training program system for hospice care volunteers was initially determined by using the method of literature analysis and investigation, and 16 experts were consulted by two rounds of letters using the method of expert inquiry from May to July 2022, and finally the training program system was established.Results:The effective recovery rate of the two rounds of expert consultation questionnaire was 100%, the expert authority coefficient was 0.88, and the Kendall coordination coefficient was 0.141, 0.131 (both P<0.05). The final training program system for hospice care volunteers contained 7 first-class indicators including training objectives, training objects, training contents, training methods, training hours, training resources and training evaluation, 27 second-class indicators and 92 third-class indicators. Conclusions:The training program system for hospice care volunteers constructed in this study has high reliability and scientificity, and has a good guiding role and reference value for the training of hospice care volunteers.

Qualitative research on home-based hospice care experiences of nurses: a Meta-synthesis / 中国实用护理杂志

Objective:To systematically review the experience of nurses′ in providing home-based hospice care, so as to provide a basis for improving the quality of home-based hospice care and the nursing service system.Methods:Qualitative researches on nurses′ experience of providing home-based hospice care were retrieved from the Cochrane Library, PubMed,Web of Science, EBSCO, Medline, China National Knowledge Internet, China Biomedical Literature Database, Wanfang Database, VIP Database from inception to April 1, 2022. Adopting Joanna Briggs Institute Critical Appraisal Tool (2016) to evaluate the quality of included studies, the Meta-synthesis was used to explain and integrate the research results.Results:A total of 9 articles were included. This study extracted 23 clear results, 8 new categories, and 3 integrated results, including the significance of nurses′ acceptance of home-based hospice care; positive and negative emotions coexist when nurses provide home-based hospice care; challenges in implementing home-based hospice care.Conclusions:The development of home-based hospice care service is helpful to provide continuous care for the terminally ill patients and improve their quality of life, but at the same time, the ability of home-based hospice care of nurses should be further improved and the related policy guarantee should be perfected to promote the steady development of home-based hospice care in China.

Volunteer Activities at the Hospice of Japan Baptist Hospital: Modified Volunteer Activities Amid the COVID-19 Pandemic

At the Japan Baptist Hospital, approximately 70 volunteers are working mainly in hospice. Owing to the coronavirus disease 2019 (COVID-19) outbreak in February 2020, volunteer activities were suspended or severely curtailed at most hospices/palliative care units in Japan. We have been attempting to determine how to continue the volunteer activities, that are indispensable to the hospice care team approach. For example, volunteers’ artworks and potted plants provided patients with the opportunity to participate in seasonal events and feel socially connected without meeting in person. Additionally, we skillfully used web resources, that allowed us to hold staff meetings and bereavement meetings during the pandemic. The hospice staff participated in hospital COVID-19 countermeasure meetings to share and provide the importance of presence of volunteers for the best care of patients throughout the hospital. The “Guideline for Volunteer Activities According to the COVID-19 Outbreak Levels” was initiated in conjunction with the hospital’s infection control team to allow us to continue volunteer activities without spreading the infection.

Espiritualidade e dor em pacientes com câncer de mama metastático / Spirituality and pain in patients with metastatic breast cancer / Espiritualidad y dolor en pacientes con cáncer de mama metastásico

Resumo Mediante estudo observacional, transversal e quantitativo que utilizou os instrumentos de avaliação Brief Pain Inventory (dor), Functional Assessment of Chronic Illness Therapy Spiritual Well-Being (bem-estar espiritual) e Beck Depression Inventory - Short Form (depressão), busca-se avaliar a influência da espiritualidade e da depressão na percepção de dor de pacientes acometidas por neoplasia de mama metastática. A idade média foi 57,3 anos e, das 30 participantes, 24 (80%) tratavam-se em serviço público; 17 (57%) tinham diagnóstico de câncer de mama há mais de cinco anos; e 27 (90%) realizavam alguma prática religiosa/espiritual. Pacientes com escore de bem-estar espiritual acima da mediana apresentaram menor escore dos sintomas depressivos (3 vs . 6; p =0,021). Não houve diferença significativa em relação à mediana do escore total do bem-estar espiritual quando estratificado pela mediana da percepção de dor (31,5% vs . 28,5%; p =0,405). Maior manifestação de bem-estar espiritual pode estar relacionada a menores índices de depressão.

Abstract This observational, cross-sectional and quantitative study, by means of the assessment instruments Brief Pain Inventory, Functional Assessment of Chronic Illness Therapy Spiritual Well-Being and Beck Depression Inventory - Short Form, evaluated the influence of spirituality and depression in the pain perception of patients with metastatic breast cancer. Mean age was 57.3 years. Of the 30 participants, 24 (80%) were treated in a public service, 17 (57%) had been diagnosed with breast cancer for more than 5 years, and 27 (90%) were religious or spiritual. Patients with spiritual well-being scores above the median had lower depressive symptom scores (3 vs. 6; p =0.021). The median total score of spiritual well-being showed no significant difference when stratified by median pain perception (31.5% vs. 28.5%; p =0.405). Greater spiritual well-being may be related to lower rates of depression.

Resumen Este estudio observacional, transversal y cuantitativo utilizó los instrumentos Brief Pain Inventory (dolor), Functional Assessment of Chronic Illness Therapy Spiritual Well-Being (bienestar espiritual) y Beck Depression Inventory - Short Form (depresión), para evaluar si la espiritualidad y la depresión influencian en la percepción del dolor en pacientes con cáncer de mama metastásico. La edad promedio fue de 57,3 años; de las 30 participantes, 24 (80%) recibían atención pública; 17 (57%) tenían diagnóstico de cáncer de mama hace más de cinco años; y 27 (90%) solían tener alguna práctica religiosa/espiritual. Aquellas con puntuación de bienestar espiritual superior a la mediana tuvieron una puntuación más baja de síntomas depresivos (3 vs. 6; p =0,021). No hubo diferencias significativas en la mediana de la puntuación total de bienestar espiritual cuando se estratificó por la percepción mediana del dolor (31,5% vs. 28,5%; p =0,405). Una mayor sensación de bienestar espiritual se relacionó a bajas tasas de depresión.

Bioética aplicada aos cuidados paliativos: questão de saúde pública / Bioethics applied to palliative care: a public health issue / Bioética aplicada a los cuidados paliativos: una cuestión de salud pública

Resumo Cuidados paliativos são um conjunto de ações que visam melhorar a qualidade de vida do paciente e de sua família quando a doença já não responde a tratamentos curativos. Abrangem cuidados físicos, psicológicos, espirituais e sociais, entendendo a morte como um processo natural, não acelerando nem retardando seu desfecho. Esta revisão integrativa qualitativa selecionou 131 artigos sobre bioética e cuidados paliativos publicados nos últimos cinco anos, analisando 10 deles. Esses estudos destacam a importância da bioética no contexto dos cuidados paliativos, abordando temas como definição, morte, final de vida e a necessidade de equipe multiprofissional interdisciplinar. A espiritualidade também desempenha papel relevante, com o paciente e a família no centro das decisões, baseadas em uma comunicação eficaz. Cuidados paliativos buscam proporcionar conforto, dignidade e suporte integral para pacientes em fase avançada de doenças, permitindo que tenham o máximo de qualidade de vida possível em seus últimos momentos.

Abstract Palliative care is a set of actions aimed at improving patients' and family members' quality of life when no curative treatment is available. It encompasses physical, psychological, spiritual and social care, understanding death as a natural process whose outcome should be accelerated or delayed. Of the 131 articles on bioethics and palliative care published in the last five years selected, this integrative review analyzes 10. These studies highlight the importance of bioethics for palliative care, addressing themes such as definitions, death, end of life and the need for a multi-professional interdisciplinary team. Spirituality also plays a relevant role, putting the patient and family members as central to decisions made based on effective communication. Palliative care aims to provide comfort, dignity and comprehensive support for patients with advanced illnesses, allowing them the maximum quality of life possible.

Resumen Los cuidados paliativos constituyen acciones para mejorar la calidad de vida de los pacientes y sus familias cuando la enfermedad ya no responde a los tratamientos curativos. Abarcan la atención física, psicológica, espiritual y social, considerando la muerte como un proceso natural y sin acelerar ni retrasar su desenlace. Esta revisión integradora cualitativa seleccionó 131 artículos sobre bioética y cuidados paliativos publicados en los últimos cinco años, y analizó diez. Los estudios destacan la importancia de la bioética en los cuidados paliativos, abordando cuestiones como la definición, la muerte, el final de la vida y la necesidad de un equipo interdisciplinar multiprofesional. La espiritualidad también desempeña un papel importante, con el paciente y la familia en el centro de las decisiones basadas en una comunicación eficaz. Estos cuidados proporcionan confort, dignidad y apoyo integral a los pacientes terminales permitiéndoles una mayor calidad de vida posible en sus últimos momentos.

Geropalliative Caring Model analysis and assessment according to Fawcett's criteria / Análisis y evaluación del Modelo de Cuidado Geropaliativo según criterios de Fawcett / Análise e avaliação do Modelo de Cuidados Geropaliativos segundo critérios de Fawcett

ABSTRACT Objectives: To analyze and assess Lee Geropaliative Caring Model according to Fawcett's criteria. Method: A theoretical-reflective study about the Geropaliative Caring Model. The analysis resulted in a detailed review of the scope, context and content of a situation-specific theory, in order to determine aspects related to nursing practice and research, and assessment addressed the concrete concepts developed in theory, their significance, internal consistency, parsimony, testability and empirical and pragmatic adequacy in nursing as a discipline. Results: Based on the analysis, a situation-specific theory was used based on the science of care and aimed at caring for older adults undergoing palliation and their families, structured into four fields, namely: (1) aligning care; (2) keeping safe; (3) comforting body/mind/spirit; and (4) facilitating transitions. Final considerations: The analyzed and assessed theory leads to a structure that includes well-defined, delimited and interrelated concepts, based on the science of care as a grand theory that allowed Geropaliative Care Model derivation.

RESUMEN Objetivo: Analizar y evaluar el Modelo de Atención Geropaliativa de Lee según los criterios de Fawcett. Método: Estudio teórico-reflexivo sobre el Modelo de Atención Geropaliativa. El análisis resultó en una revisión detallada del alcance, contexto y contenido de una Teoría de Situaciones Específicas, con el fin de determinar aspectos relacionados con la práctica y la investigación de la enfermería, y la evaluación abordó los conceptos concretos desarrollados en la teoría, su significado, consistencia interna, parsimonia, contrastabilidad y adecuación empírica y pragmática en la enfermería como disciplina. Resultados: A partir del análisis, se utilizó una Teoría de Situaciones Específicas basada en la ciencia del cuidado y orientada al cuidado de las personas mayores en paliación y de sus familias, estructurada en cuatro dominios, a saber: (1) alineación del cuidado; (2) mantener la seguridad; (3) comodidad cuerpo/mente/espíritu; y (4) facilitación de los procesos de transición. Consideraciones finales: La teoría analizada y evaluada conduce a una estructura que incluye conceptos bien definidos, delimitados e interrelacionados, basándose en la ciencia del cuidado como una gran teoría que permitió derivar el Modelo de Cuidado Geropaliativo.

RESUMO Objetivo: Analisar e avaliar o Modelo de Cuidados Geropaliativos de Lee segundo os critérios de Fawcett. Método: Estudo teórico-reflexivo acerca do Modelo de Cuidados Geropaliativos. A análise suscitou em uma revisão detalhada do escopo, contexto e conteúdo de uma Teoria de Situação Específica, a fim de determinar os aspectos relacionados à prática e pesquisa na enfermagem, e a avaliação abordou os conceitos concretos desenvolvidos na teoria, sua significância, consistência interna, parcimônia, testabilidade e adequação empírica e pragmática na enfermagem enquanto disciplina. Resultados: A partir da análise, utilizou-se uma Teoria de Situação Específica baseada na ciência do cuidar e direcionada aos cuidados à pessoa idosa em paliação e sua família, estruturada em quatro domínios, a saber: (1) alinhamento dos cuidados; (2) manutenção da segurança; (3) conforto corpo/mente/espírito; e (4) facilitação dos processos de transições. Considerações finais: A teoria analisada e avaliada direciona para uma estrutura que contempla conceitos bem definidos, delimitados e inter-relacionados, com base na ciência do cuidar enquanto grande teoria que permitiu a derivação do Modelo de Cuidados Geropaliativos.

Significado del cuidado espiritual de enfermería en pacientes en cuidados paliativos

Objetivo: describir el significado de cuidado espiritual que brinda el personal de enfermería a los pacientes en cuidados paliativos Métodos: se trata de un estudio cualitativo, descriptivo; con enfermeras de instituciones de salud de segundo nivel de atención en el estado de Guanajuato. Selección de participantes por muestreo por conveniencia con 9 participantes. Colecta de datos a través de entrevista semiestructurada audiograbada, análisis de datos temático; se respetaron los criterios éticos, los participantes firmaron un consentimiento informado. Resultados: emergieron seis temas: Cuidar las necesidades de los pacientes, Significado de espiritualidad, Acompañamiento, alivio y apoyo, Cuidando el respeto de las creencias, Dificultades vividas en el cuidado espiritual y Necesidad de cambios en el cuidado espiritual. Conclusiones: el significado del cuidado espiritual de enfermería considera la conexión con la naturaleza y el universo y las creencias y prácticas; esta conexión nace en el cuidado de las necesidades propias que fomentan confort, la espiritualidad da sentido al cuidado espiritual como el acompañar, aliviar y apoyar teniendo en cuenta el respeto de las creencias. Se encuentran dificultades en el cuidado espiritual y una necesidad de cambios en el mismo para poder incorporarlo en el cuidado cotidiano.

Objective: to describe the meaning of spiritual care provided by nurses to palliative care patients. Methods: this is a qualitative, descriptive study; with nurses from second level health care institutions in the state of Guanajuato. Selection of participants by convenience sampling with 9 participants. Data collection through semi-structured audio-recorded interview, thematic data analysis; ethical criteria were respected, participants signed an informed consent. Results: six themes emerged: caring for patients' needs, Meaning of spirituality, Accompaniment, relief and support, Caring for respect of beliefs, Difficulties experienced in spiritual care and Need for changes in spiritual care. Conclusions: the meaning of nursing spiritual care considers the connection with nature and the universe and beliefs and practices; this connection is born in caring for one's needs that foster comfort, spirituality gives meaning to spiritual care as accompanying, relieving and supporting taking into account respect for beliefs. Difficulties are found in spiritual care and a need for changes in it in order to incorporate it into daily care.

Análisis de costo-efectividad de los cuidados paliativos a pacientes oncológicos de fin de vida / Cost-effectiveness analysis of palliative care of cancer patients in the end of life / Análise de custo-efetividade dos cuidados paliativos de pacientes oncológicos na terminalidade da vida

En pacientes con enfermedad terminal, los servicios de cuidados paliativos domiciliarios pueden alinear sus preferencias de cuidado en domicilio con resultados sanitarios deseables. El objetivo fue estudiar la costo-efectividad de los cuidados paliativos domiciliarios en pacientes oncológicos en el último año de vida en el subsector público de salud de una provincia argentina. Se desarrolló un modelo de Markov de costo-efectividad desde una perspectiva social y del financiador de salud, de modo que el mismo pudiera reflejar la realidad de los cuidados paliativos domiciliarios en el ámbito local, en comparación con los cuidados habituales. Se calcularon los costos directos para el sistema de salud, con base en información local, así como también los costos indirectos de los cuidados informales no remunerados. La provisión de cuidados paliativos incrementó en un 10,32% la probabilidad que los pacientes fallezcan en el hogar, en relación con los cuidados habituales, con un ahorro anual de USD 750 y USD 1.012 por paciente desde la perspectiva social y del financiador, respectivamente, en el subsector público de salud de Río Negro. Tanto desde la perspectiva social como del financiador, la estrategia de implementación de un servicio organizado de cuidados tiene una mayor efectividad, medida en porcentaje de pacientes que fallecen en su domicilio, a un menor costo. El principal inductor de costos corresponde, desde la perspectiva social, a los cuidados informales provistos por las familias, mientras que desde la perspectiva del financiador corresponde a los salarios del personal de salud.

Home palliative care services of terminal patients may associate home care preferences with desirable health outcomes. This study aimed to evaluate the cost-effectiveness of home palliative care of cancer patients in the last year of life in the public health subsector in a province of Argentina. A cost-effectiveness Markov model was developed from a social and the health funder's perspective in order to reflect the reality of home palliative care at the local level compared with usual care. Direct costs to the health system and indirect costs of unpaid informal care were estimated based on local information. Palliative care increased the likelihood of patients dying at home by 10.32% compared with usual care, with annual savings of USD 750 and USD 1,012 per patient, respectively, from both the social and the funder's perspective in the public health subsector in Río Negro. From both the social and financial perspective, the strategy to implement organized care services was more effective and lower-cost, measured by the percentage of patients who died at home. From a social perspective, the main cost inducer was the formal care provided by families, but from the funder's perspective, it refers to the salaries of the health team.

Os serviços de cuidados paliativos domiciliares de pacientes terminais podem associar as preferências de cuidado domiciliar com resultados desejáveis de saúde. O objetivo deste texto foi avaliar a relação custo-efetividade dos cuidados paliativos domiciliares em pacientes oncológicos no último ano de vida, no subsetor de saúde pública de uma província na Argentina. Um modelo Markov de custo-efetividade foi desenvolvido a partir de uma perspectiva social e do financiador de saúde para que pudesse refletir a realidade dos cuidados paliativos domiciliares em âmbito local comparado aos cuidados habituais. Os custos diretos para o sistema de saúde e os custos indiretos de cuidados informais não remunerados foram calculados com base em informações locais. A prestação de cuidados paliativos aumentou 10,32% a probabilidade de os doentes morrerem em casa em relação com os cuidados habituais, com uma economia anual de USD 750 e USD 1.012 por paciente, respetivamente, na perspectiva social e do financiador, no subsetor da saúde pública de Rio Negro. Tanto do ponto de vista social como no financeiro, a estratégia de implantação de serviços de cuidados organizados foi mais eficaz e com menor custo, medida pelo percentual de pacientes que faleceram em casa. O principal indutor de custos corresponde, do ponto de vista social, aos cuidados informais prestados pelas famílias, enquanto do ponto de vista do financiador se refere aos salários da equipe de saúde.

Testamento vital sob a ótica de enfermeiros que assistem pacientes em situação de terminalidade / Living will from the perspective of nurses caring for terminally ill patients / El testamento vital en la perspectiva de los enfermeros que atienden a pacientes terminales

Objetivos: conhecer a representação do Testamento Vital para os enfermeiros que atuam na assistência à pacientes em situação de terminalidade. Métodos:estudo de abordagem qualitativa, realizado em hospital público universitário de alta complexidade localizado na cidade de São Paulo, São Paulo, Brasil, com 15 enfermeiros que atuam na assistência à pacientes terminais, por meio de entrevista norteada pela questão "Fale a respeito do Testamento Vital". A análise dos dados foi desenvolvida pelo Discurso do Sujeito Coletivo. Resultados: identificou-se três categorias que compõem o Discurso do Sujeito Coletivo dos enfermeiros em relação ao testamento vital: "o enfermeiro frente às diretivas antecipadas de vontade"; "o enfermeiro frente à família do paciente em terminalidade" e "o enfermeiro frente ao médico do paciente em terminalidade". Conclusão: o testamento vital representa, na perspectiva dos enfermeiros, a autonomia e o direito do paciente pelas decisões nas situações de terminalidade que devem ser compartilhadas com seus familiares e profissionais de saúde.

Objectives: to know the representation of the living will for nurses working in the care of terminally ill patients. Methods: a qualitative study conducted in a high complexity public university hospital located in the city of São Paulo, São Paulo, Brazil. An interview guided by the question "Talk about the living will" was performed with 15 nurses working in the care of terminally ill patients. Data analysis was performed using the Discourse of the Collective Subject. Results: three categories that make up nurses' Collective Subject Discourse in relation to living wills were identified: "the nurse before advance directives"; "the nurse before the terminally ill patient's family" and "the nurse before the terminally ill patient's physician". Conclusion: from the perspective of nurses, the living will represent the patient's autonomy and right to make decisions in terminally ill situations that must be shared with their family members and health professionals

Objetivos: conocer la representación del Testamento Vital para enfermeros que actúan en el cuidado de enfermos terminales. Métodos: estudio cualitativo realizado en un hospital universitario público de alta complejidad ubicado en la ciudad de São Paulo, São Paulo, Brasil. Se realizó una entrevista guiada por la pregunta "Hablemos del Testamento Vital" con 15 enfermeros que actúan en el cuidado de pacientes terminales. El análisis de los datos se realizó utilizando el Discurso del Sujeto Colectivo. Resultados: se identificaron tres categorías que componen el Discurso del Sujeto Colectivo de los enfermeros en relación a los testamentos vitales: "el enfermero frente a las directivas anticipadas"; "la enfermera frente a la familia del enfermo terminal" y "la enfermera frente al médico del enfermo terminal". Conclusión: en la perspectiva de los enfermeros, el testamento vital representa la autonomía y el derecho del paciente a tomar decisiones en situaciones terminales que deben ser compartidas con sus familiares y profesionales de la salud.

Qualitative Study on Disease Communication Experience between Parents and Cancer Children from the Perspective of Familism / 中国医学伦理学

【Objective:】 To explore the disease communication between cancer children and their parents from the perspective of their parents. 【Methods:】 Using qualitative description method and semi-structured interview, 16 parents from the pediatric oncology department of a tertiary A hospital were collected. Colaizzi 7-step method was used to analyze the interview data and summarize the theme. 【Results:】 Four themes were summarized, including perception of the psychological changes of children after illness, changes in the future planning of children, different attitude towards informing children’s diseases, different opinions on children’s participation in medical decision-making. 【Conclusions:】 The awareness of disease communication and medical decision-making in cancer families is insufficient. It is difficult for parents to communicate actively and effectively with their cancer children, and the children’s families are unable to make clear plans for the children’s future. Therefore, it is necessary to construct a theoretical system of disease communication and medical shared decision-making from the perspective of Chinese familism, and strengthen the promotion of scientific communication methods.

Research Progress in Hospice Communication between Cancer Patients and Doctors / 中国医学伦理学

With the increasing number of cancer patients in China, the lack of hospice communication between medical staff and cancer patients can easily cause doctor-patient conflicts. Facing the special group of cancer patients, by introducing the concept of hospice communication and comparing the current situation of hospice communication of cancer patients at home and abroad, this paper found the shortcomings of hospice communication between medical staff and cancer patients in China. This paper aimed to analyze the influencing factors of cancer patients’ hospice communication from three aspects of medical staff, cancer patients and social and cultural background, summarized the assessment tools and matters needing attention related to hospice communication, so as to provide reference for domestic medical staff to develop relevant tools for hospice communication with cancer patients, and help medical staff to implement more effective hospice communication with cancer patients in the context of tranquil care. It is also conducive to help patients open the topic of death from the perspective of doctors and build an open hospice communication environment that is more in line with national conditions of China.

Localized Practice and Ethical Dilemma of Social Work in Hospice Care: Taking the Casework of Terminal Cancer Patient as an Example / 中国医学伦理学

The positive role of hospice social work in responding to the needs of terminal cancer patients and their families has been highlighted, and has also triggered discussions on localized ethical issues. Taking the casework of terminal cancer patients as an example, this paper analyzed the specific manifestations and causes of ethical dilemmas in the practice of hospice social work, and then provided ideas for coping with them. It was found that hospice care casework workers face four ethical dilemmas, including quality of life dilemmas, emotional boundaries dilemmas, power relationship dilemmas, and cultural respect dilemmas. Service managers can enhance the ethical issue response ability of front-line workers by improving the collaborative service mechanism between medical and social institutions, constructing a whole-process professional supervision system, conducting skills training for caring social workers, and expanding patient and family life education services. The ethical dilemmas in hospice social work service are localized, and will affect the service effect. The response to these issues requires the joint participation of the government, society, universities, hospitals, and front-line social workers.

Application Status and Research Progress of Palliative Care in Patients with End-stage Renal Disease / 中国医学伦理学

End-stage renal disease is the final stage of chronic kidney disease, and research on palliative care for end-stage renal disease patients in China is still in its infancy. The research content of palliative care for end-stage renal disease at home and abroad mainly includes identification and management of symptoms, advance care planning, psychosocial and spiritual support, and ethical issues in dialysis decision-making. However, practical experience is still insufficient. By focusing on the overview, development status, patient needs, as well as implementation forms and models of palliative care for endstage renal disease patients, this paper summarized the research progress and application status of related research, with a view to providing references for future domestic research and clinical practice in this field.

Learning Situation Analysis on "Living Will" and "Hospice Care" in Teaching Practice of Geriatrics / 中国医学伦理学

Objective: To investigate the cognitive status of "living will" and "hospice care" among geriatrics students with different identities, and to provide a basis for improving teaching in corresponding sections of geriatric medicine. Methods:An online questionnaire was used to collect data from 426 students participating in specific courses in geriatric medicine and compare their differences in understanding of different issues. Results: There was no statistically significant difference in the understanding of the concept of "living will" among students with different identities (χ2=5.84, P=0.054). In terms of the concept of "hospice care" , geriatricians and general practitioners had a better understanding than that of medical undergraduates (χ2=37.932, P<0.001). Compared to geriatricians and medical undergraduates, general practitioners had a lower level of autonomy in deciding whether to use life support treatment, and the difference was statistically significant (χ2=28.737, P<0.001). There was a statistically significant difference between general practitioners and medical undergraduates in the understanding of "signing living will" (χ2=12.75, P=0.01). Conclusion: The promotion of "living will" and "hospice care" in humanities courses of medical undergraduate and continuing medical education needs to be strengthened, and the popularization and publicity among the general public should be enhanced to lay the groundwork for improving the quality of hospice care.

Progress in the Application of Various Theoretical Models in Advance Care Planning / 中国医学伦理学

Advance care planning (ACP) is an important part of hospice care, a core index of high-quality palliative care, and one of the effective indicators for improving the life quality of end-of-life patients. By reviewing the progress of various theoretical models and their applications in ACP, including planned behavior theory, behavioral change wheel theory, self-determination theory, prospect theory, change theory, and cultural suitability theory, this paper delved into the advantages and limitations of each theoretical model and analyzed its research prospects in future ACP clinical practice to promote researchers’ correct understanding of the role of different theoretical models in various types of studies, with a view to providing new ideas for clinical research on ACP.

Analysis on Hospice Care Cognition Status and Influencing Factors among High School Students in Guangzhou / 中国医学伦理学

【Objective:】 To investigate the cognition, attitude and influencing factors of hospice care among high school students in Guangzhou, and to provide basis for improving the understanding level of hospice care and death education among adolescents. 【Methods:】 A total of 226 questionnaires were collected by convenient sampling and questionnaire survey. The questionnaire covered two parts: basic information of the respondents, cognition and attitude towards hospice care (including four dimensions: basic knowledge of hospice care, knowledge of pain control, attitude and thought of hospice care, and attitude towards hospice care education). Excel software was used to preliminary screen, preprocess and establish database of data. SPSS21.0 was used for statistical analysis. T-test and ANOVA were used for difference analysis, multiple linear regression was used for correlation analysis. 【Results:】 High school students had a basic understanding of hospice care. Among the four dimensions of basic knowledge of hospice care, knowledge of pain control, attitude and thought of hospice care, and attitude towards hospice care education, the cognition of "knowledge of pain control" dimension was the weakest link, and the entry of "attitude and thought of hospice care" had the highest score, which was the strong cognitive link. 【Conclusion:】 The main influencing factors of high school students’ cognition of hospice care were family structure, family residence and whether they have understood hospice care. This paper recommended that schools should add medical humanities education courses related to hospice and death education, and cooperate with hospice care centers to carry out hospice care experience practices. It was also suggested that relevant departments or organizations should make full use of mainstream media, such as online media and WeChat public accounts, to strengthen the popularity and popularization of hospice care education and science popularization from multiple channels and aspects, and improve the level and quality of hospice care education for young people.

Construction of Sustained Social Support System for Advance Care Plan / 中国医学伦理学

With the aggravation of global aging process and the strengthening of patients’ awareness of rights, the realization of the elderly and end-of-life patients’ right to know and autonomy, and the satisfaction of physical and mental needs have become new indicators to measure social development. Advance care plan focuses on the discussion process of patients, their families and medical staff on end-of-life medical decisions and death intentions, which greatly promotes the development concept of palliative care and optimal death. To promote this process in the context of traditional Chinese culture, it is also necessary to combine with the local family concept and collectivism. Therefore, this paper introduced a sustainable social support system involving multiple subjects such as families, communities, social workers, and legal workers, with a view to benefiting the elderly and end-of-life patients.