ABSTRACT
En la actualidad, la oferta de cuidados paliativos especializados ha sido superada por la demanda, por lo cual la atención a pacientes con enfermedades en estado terminal o en fase final de la vida suele estar a cargo del médico del nivel primario de asistencia. En ese sentido, los cuidados paliativos primarios incluyen el diagnóstico, el tratamiento paliativo, la planificación anticipada, la gestión y coordinación de intervenciones multidisciplinarias y la transferencia a cuidados especializados cuando sea necesario y haya disponibilidad para ello. Al respecto, en este artículo se exponen brevemente algunos elementos sobre el tema y se propone, además, un algoritmo práctico y fácil de aplicar en la atención primaria, que permitirá identificar a la población aquejada por dolencias en esas etapas, con diferenciación en cuanto a afecciones neoplásicas o no neoplásicas.
Nowadays, the offer of specialized palliative care has been overcome by the demand, reason why care to patients with terminal illness or in end-of-life period is usually in charge of the doctor from primary care level. In that sense, primary palliative care includes the diagnosis, palliative treatment, early planning, administration and coordination of multidisciplinary interventions and referring to specialized care when it is necessary and the service is available. In this respect, some elements on the topic are shortly exposed in this work and, also, a practical and easy implementation algorithm in primary care is proposed that will allow identifying population suffering from pain in those stages, with differentiation as for neoplastic or non neoplastic affections.
ABSTRACT
The communication between professional health caregivers, which mainly composed of medical staff, and patients and their families plays an important role in hospice care. The effective doctor-patient communication can guide terminal patients and their families to establish a correct medical view, reduce excessive medical treatment, and improve the quality of life for terminal patients. This paper briefly described the communication context of hospice care, the communication subject and the current situation of hospice care, analyzed the problems and challenges encountered by professional health caregivers, which mainly including medical staff, in the communication context of hospice care diagnosis and hospice care, and made the prospects of the development of effective communication measures.
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Under the background of aging, the hospice care of the elderly, disability and dementia, and critically ill patients has attracted more and more attention. This paper discussed the ways to improve the quality of life of dying patients and proposed a method of whole-person, whole-family, whole-team care and companionship while doing medical treatment of this group. It also put forward suggestions: take hospice care as a strategic project to deal with aging, incorporate it into the Healthy China strategy, encourage more doctors, volunteers and caring people to join the hospice care team in terms of policy and employment orientation, and promote medical colleges from the aspects of disciplines, courses, teachers and examination, so as to constantly explore a more reasonable and warmer hospice care mechanism and model, alleviate the physical and mental problems of patients and let life end with more dignity.
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In an aging society, the coexistence of multiple diseases among the elderly is prominent, and the prevalence of malignant tumors continues to rise.It has positive practical significance that improving the quality of life of dying patients and developing hospice care. Based on welfare multivariate theory, volunteers joining the hospice care team is conducive to the diversified development of the hospice care. By carrying out voluntary services and giving dignity to the dying, the quality of death can be improved and social support can be reflected. Based on the theory of mutual aid, volunteer participation in hospice care services is conducive to promoting the improvement of social spiritual civilization and achieving a virtuous cycle of intergenerational mutual aid. The mode of volunteer participation in hospice care service is still being gradually explored. This paper aimed to propose that the government introduces relevant voluntary service policies to build a good social atmosphere; based on the knowledge, belief and practice model, carry out education and training for volunteers and promote the overall coordinated development of the service team; put forward suggestions on improving the volunteer service mechanism by reaching confidentiality agreements, and improving the willingness of the dying and their families to accept volunteer services, so as to provide reference for the sustainable development of hospice care.
ABSTRACT
Due to the difference of cultural background, the psychological, social and spiritual needs of dying people are very different, so there are great differences in the care and nursing concept of dying people in different countries and nationalities. In order to construct the modern hospice care, we should actively learn from the western experience, but more important is to dig the local ideological resources from the traditional culture, build a set of caring care theory and practice rooted in China and originated from the concept of a good end of Chinese traditional culture, with the characteristics of the times and the cultural confidence of the Chinese nation, serving the Chinese people, and with Chinese characteristics.
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Resumo O direito à morte digna é majoritariamente ignorado pelo ordenamento brasileiro. Essa invisibilidade do processo de finitude e suas consequências são tema deste estudo, que objetiva realizar um levantamento exploratório para identificar pontos relevantes que devem ser desenvolvidos para garantir um processo de finitude digno. Foram analisadas 50 publicações, mediante levantamento online e físico de obras publicadas até março de 2023. Os estudos analisados expressam preocupação com dilemas éticos do cuidar do ser humano em finitude, mas não analisam formas existentes de tutela da finitude nem quais searas ainda são carentes de normatização para dar eficácia a esse cuidado. Espera-se que esta pesquisa contribua para fortalecer o olhar crítico ao tema, considerando as atuais tutelas da finitude, os limites legais do Estado e os potenciais passos futuros para fazer avançar os estudos aplicados à atualização prática do ordenamento brasileiro.
Abstract The right to a dignified death is largely overlooked by Brazilian law. This neglect of the end-of-life process and its ramifications is the focus of this study, which aims at an exploratory survey to identify pertinent aspects requiring development to ensure a dignified end-of-life experience. In total, 50 publications were examined with online and physical surveys of works published up to March 2023. They express concerns regarding ethical dilemmas in caring for individuals nearing the end of life, yet they do not delve into existing mechanisms for safeguarding end-of-life dignity or identify areas that still lack standardization to ensure effective care. This study should contribute to the enhancement of critical perspectives on the issue of end-of-life experiences, considering current safeguards, the legal boundaries set by the State, and potential future strides toward advancing studies aimed at the practical update of the Brazilian legal system.
Resumen El derecho a una muerte digna es ampliamente ignorado por el ordenamiento jurídico brasileño. Esta invisibilidad del proceso de finitud y sus consecuencias son el objeto de este estudio, que tiene como objetivo realizar una encuesta exploratoria para identificar los puntos relevantes que deben desarrollarse para garantizar un proceso de finitud digno. Se analizaron 50 publicaciones a través de una encuesta online y física de obras publicadas hasta marzo de 2023. Los estudios analizados expresan preocupación por los dilemas éticos de la atención a seres humanos en finitud, pero no analizan las formas de protección a la finitud existentes ni cuáles son las áreas que aún necesitan regulación para hacer efectiva esta atención. Se espera que esta investigación contribuya a fortalecer la visión crítica de la finitud, considerando la protección actual de la finitud, los límites jurídicos del Estado y los posibles pasos futuros para avanzar en los estudios aplicados a la actualización práctica del sistema jurídico brasileño.
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【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.
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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.
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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.
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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.
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【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.
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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.
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【Objective:】 To investigate the current situation of attitudes and training needs of hospice care among nursing staff in Hainan Province, and analyze the influencing factors, so as to provide basis for formulating scientific and standardized hospice care training programs for nursing staff. 【Methods:】 From October to December in 2021, a total of 1 819 nursing staff from 45 general hospitals, specialized hospitals and nursing homes in 14 cities and counties of Hainan province were selected by convenience sampling method to conduct the questionnaire on hospice care attitude and training needs. 【Results:】 1 789 valid questionnaires were collected with effective recovery of 98.35%. Nursing staff hospice care attitude score was (88.13±12.10) points, the standard score was 70.4 points, hospice care attitude was at medium level. Nursing staff training needs score was (26.96±5.16) points, the standard score was 89.87, the needs of each dimension and item were higher than 75.1%, the training needs were at high level. Professional title, currently engaged in hospice care services, and willingness to engage in hospice care services were the influencing factors of hospice care training needs (P<0.05), and the hospital, have witnessed the death of dying patients or relatives, willingness to engage in hospice care services were the main influencing factors of nurses’ attitude toward hospice care (P<0.05). 【Conclusion:】 At present, nursing staff in Hainan Province held a moderate attitude towards hospice care, and had a high demand for training. The major obstacles for nursing staff to engage in hospice care at present were high stress in the face of dying patients and symptom management. Nursing managers should combine the current situation, pay attention to stimulate nurses’ intrinsic motivation, strengthen the training of nursing staff’s concept of hospice nursing, construct a diversified training system, and carry out specialized and modular skill practice and theoretical training to improve nursing staff’s hospice care ability.
ABSTRACT
Resumo Há pouco consenso na literatura sobre como deve ocorrer o manejo do sofrimento existencial refratário, um desafio clínico dramático que pode ocorrer no contexto da terminalidade. Este artigo apresenta um relato de caso de uma paciente internada no Hospital de Apoio de Brasília que necessitou de sedação paliativa para alívio de sofrimento existencial refratário e obteve controle satisfatório de sintomas. Também foi elaborado fluxograma decisório, embasado em revisão que inclui as diretrizes europeias de sedação paliativa, uma ferramenta útil para clínicos em cenários de cuidados paliativos.
Abstract There is little consensus in the literature on how refractory psychological distress, a serious clinical challenge that may occur at end of life, should be managed. This case report focuses on a patient hospitalized at the Hospital de Apoio in Brasília, who required palliative sedation for refractory psychological distress relief and obtained satisfactory symptom control. A flowchart was elaborated based on bibliographic review which included the European guidelines for palliative sedation, a useful tool for clinical cases in palliative care.
Resumen Existe poco consenso en la literatura sobre cómo manejar el sufrimiento existencial refractario, un desafío clínico que puede ocurrir en el contexto del fin de la vida. Este artículo presenta el reporte de caso de un paciente ingresado en el Hospital de Apoyo de Brasília, quien requirió sedación paliativa para aliviar el sufrimiento existencial refractario y obtuvo un control satisfactorio de los síntomas. También se elaboró un diagrama de flujo para la toma de decisiones, basado en una revisión que incluye las directrices europeas para la sedación paliativa, una herramienta útil para los clínicos en el contexto de cuidados paliativos.
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Resumo A sedação paliativa está inserida no amplo espectro de práticas e condutas dos cuidados paliativos. Seu objetivo principal não é adiantar o fim da vida, mas sim prover conforto e alívio dos sintomas em uma condição de vida terminal. A prática diverge opiniões tanto no ambiente acadêmico e profissional quanto no social e religioso. Como objetivo, esta revisão integrativa da literatura buscou discussões e pesquisas mais pertinentes no cenário brasileiro, a fim de contribuir para a construção de uma noção mais atualizada e adequada ao contexto contemporâneo quanto à sedação paliativa. Questões como surgimento, opinião de médicos e estudantes, fatores bioéticos e desafios quanto à aplicação compõem a discussão da sedação paliativa na terminalidade. Todavia, a literatura disponível sobre a temática ainda é escassa, permeada de aspectos sociais, éticos, religiosos e de profissionais que demandam interpretações individuais e consenso entre as esferas sociais.
Abstract Palliative sedation integrates the broad spectrum of practices and approaches in palliative care. Its main objective is not to anticipate the end of life, but to provide comfort and symptom relief for terminal conditions; however, opinions in academic, professional, social, and religious contexts differ about its application. This integrative literature review gathers relevant discussions and research in the Brazilian context to contribute to a more updated and appropriate understanding of palliative sedation. Discussions on palliative sedation bring issues regarding its emergence, the opinions of physicians and students, bioethical factors, and challenges. However, the available literature on this topic is scarce, encompassing social, ethical, religious, and professional aspects that require individual interpretations and consensus among social spheres.
Resumen La sedación paliativa integra el amplio conjunto de prácticas y acciones de los cuidados paliativos. Su objetivo principal no es acelerar el final de la vida, sino proporcionar confort y alivio de los síntomas de los pacientes terminales. Esta práctica genera opiniones divergentes tanto en el ámbito académico y profesional como en el social y religioso. Esta revisión integradora de la literatura busca levantar las discusiones e investigaciones más pertinentes en el escenario brasileño para contribuir a la construcción de una noción más actualizada y adecuada contemporáneamente sobre sedación paliativa. El surgimiento, la opinión de médicos y estudiantes, los factores bioéticos y los desafíos en la aplicación constituyen temas de discusión sobre la sedación paliativa en el final de la vida. Sin embargo, la literatura disponible sobre este tema sigue siendo escasa, permeada de cuestiones sociales, éticas, religiosas y profesionales que requieren interpretaciones individuales y consenso entre las esferas sociales.
ABSTRACT
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.
Subject(s)
Hospice CareABSTRACT
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.
Subject(s)
Humans , Female , Cross-Sectional Studies , Hospice Care , Neoplasm MetastasisABSTRACT
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.
Subject(s)
Humans , Male , Female , Living Wills , Ethics, Nursing , Advance Directives , Hospice CareABSTRACT
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.
ABSTRACT
Objective:To survey the status quo of hospice care service in community health service centers in Shanghai.Methods:A questionnaire survey was conducted to investigate the situation of hospice care services from January 2021 to December 2021 in 16 community health service centers selected by stratified sampling from 16 districts in Shanghai.Results:Among 16 community health service centers, 13 provided inpatient hospice care services, 16 provide home hospice care and 14 provided outpatient hospice care services; and totally 1 935 (77.93%), 158 (6.36%) and 390 (15.71%) patients received palliative care, respectively. In centers providing inpatient hospice care service, the average bed number was 12 (10, 20); the annual number of patients was 58 (29, 137); the average length of hospital stay was (29.55±11.18) days; and the bed occupancy rate was (55.51±30.02)%, which in urban districts was significantly higher than that in rural districts ((74.76±19.33)% vs.(39.00±28.32)%; t=2.61, P=0.024). The number of patients receiving home hospice care in each center was 10 (3, 19) and the average duration of home service was (66.97±29.41) days. The proportion of physician fee of inpatient hospice care and that of home hospice care were (8.61±5.27)% and (6.25±3.11)%, respectively. While the proportion of medication expenses of inpatient hospice care and that of home hospice care were (35.60±16.13)% and(49.58±9.16)%, respectively. The outpatient hospice service were opened 2.0 (1.0, 4.0) days a week in 14 centers and 95 (58, 199) patients received services. Inpatient services were mainly provided for the patients with non-malignant chronic diseases (53.23%, 1 030/1 935), while home hospice care (89.87%, 142/158) and outpatient hospice care (83.85%, 327/390) mainly provided service for malignant patients. Conclusion:There is still room for improvement about the hospice care services delivered by community health service centers in Shanghai:discrepancy of utilization of hospice care services between urban districts and rural districts, low utilization of home and outpatient hospice care services, unreasonable cost composition in inpatient and home hospice care services.