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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.
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Humans , Female , Cross-Sectional Studies , Hospice Care , Neoplasm MetastasisABSTRACT
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.
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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.
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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.
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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.
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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.
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Objective:To investigate the work stress and its influencing factors among hospice care physicians and nurses in medical institutions in Shanghai.Methods:It was a cross-sectional study. The study was carried out between December 2021 and January 2022. By use of multistage random sampling, 256 hospice care physicians and nurses were selected from community healthcare centers, secondary and tertiary hospitals in Shanghai to attend a WeChat-based survey using a self-designed questionnaire. The chi-square test was used to compare the differences in prevalence of work stress and stressors among all subjects with different characteristics. Binary logistic regression analysis was used to explore the major determinants associated with work stress. And the sources of work stress and the expepectd decompression countermeasures were investigated.Results:A total of 256 valid questionnaires were collected with a recovery rate of 100.0%. The median of work stress score was 7.5 (6.0, 9.0). Logistic regression analysis showed that those aged>40 years old and working for ≥5 years in hospice care service had higher level of work stress ( OR=3.78, 2.04; P=0.007, 0.039), and those with monthly income>10 000 RMB Yuan had lower level of work stress ( OR=0.34, P=0.005). The top three stressors were the death of patients (88.3%, 226/256), low income (78.1%, 200/256), difficulty in promotion (67.2%, 172/256). The top three way that doctors and nurses desired to reduce work stress were to increase income (88.3%, 226/256) and optimize performance appraisal target (78.1%, 200/256) and promotion mechanism (66.0%, 169/256). Conclusions:In general, the work stress among hospice care physicians and nurses is at a high level in Shanghai and the stressors are widely distributed. Age, monthly salary and years of working in hospice care unit are independent factors of work stress. Improving salary, optimizing performance appraisal target and promotion mechanism are the most desired strategies to reduce work stress among hospice care physicians and nurses.
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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.
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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.
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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.
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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
Resumo Esta revisão sistemática visa identificar dificuldades enfrentadas por profissionais no manejo clínico de crianças em final de vida. Para tanto, realizou-se busca de artigos científicos nas bases de dados SciELO e LILACS por meio dos descritores "limitação de suporte terapêutico", "terminalidade" e "medidas de conforto", combinados com o descritor "crianças". Do total de 102 trabalhos completos encontrados, nove contemplaram os critérios de inclusão para a amostra do estudo. Os resultados apontam dificuldades em relação à tomada de decisões e à limitação terapêutica de pacientes infantis. Conclui-se que, quando se sentem melhor preparados para trabalhar com questões referentes ao processo de morte e morrer, os profissionais podem prestar um cuidado mais humanizado a pacientes e familiares.
Abstract This systematic review sought to identify difficulties faced by professionals in the clinical management of end-of-life child patients. Bibliographic search was conducted on the SciELO and LILACS databases using the descriptors "therapeutic limitation," "hospice care" and "comfort measures," combined with the descriptor "child." Of the 102 complete studies identified, nine met the established inclusion criteria. The results point to difficulties regarding decision making and therapeutic limitation for infant patients. In conclusion, when professionals feel better prepared to address issues related to the process of death and dying, they can provide more humanized care to patients and families.
Resumen Esta revisión sistemática tiene por objetivo identificar las dificultades que enfrentan los profesionales en el manejo clínico de los niños al final de la vida. Para ello, se realizó una búsqueda de artículos científicos en las bases de datos SciELO y LILACS utilizando las palabras clave "limitación del apoyo terapéutico", "final de la vida" y "medidas de confort", combinadas con "niños". Del total de 102 artículos completos encontrados, nueve cumplieron con los criterios de inclusión para la muestra del estudio. Los resultados apuntan a dificultades con relación a la toma de decisiones y a limitaciones terapéuticas de los pacientes pediátricos. Se concluye que los profesionales cuando se sienten más preparados para lidiar con cuestiones relacionadas con el proceso de muerte y morir pueden brindar una asistencia más humanizada a los pacientes y familias.
Subject(s)
Right to Die , Attitude to Death , Child , Hospice Care , Health PersonnelABSTRACT
Objetivo: Construir protocolo de enfermagem para o manejo de pacientes em terminalidade. Metodologia: Revisão integrativa da literatura, utilizando as bases de dados da BVS, CINAHL, SCOPUS, Web of Science, Embase e PUBMED, sem limites cronológicos, nos idiomas português, inglês e espanhol. Resultados: Os diagnósticos de enfermagem da classificação NANDA 2021-2023 mais prevalentes pertenciam ao domínio atividade/repouso, seguidos pelo domínio enfrentamento/tolerância ao estresse e segurança/proteção. Para cada diagnóstico prevalente estabeleceu-se intervenções de enfermagem, plausíveis no contexto de terminalidade. Conclusão: O protocolo de assistência de enfermagem ao paciente em cuidado terminal é um importante ponto de partida para se estabelecer condutas de enfermagem e fomentar a prática assistencial aos pacientes em terminalidade.(AU)
Objective: To build a nursing protocol for the management of terminally ill patients. Methodology: Integrative literature review, using the VHL, CINAHL, SCOPUS, Web of Science, Embase and PUBMED databases, without chronological limits, in Portuguese, English and Spanish. Results: The most prevalent NANDA 2021-2023 classification nursing diagnoses belonged to the activity/rest domain, followed by the coping/stress tolerance and safety/protection domains. For each prevalent diagnosis, plausible nursing interventions were established in the context of terminality. Conclusion: The nursing care protocol for terminally ill patients is an important starting point for establishing nursing behaviors and fostering care practice for terminally ill patients(AU)
Objetivo: Construir un protocolo de enfermería para el manejo de pacientes terminales. Metodología: Revisión integrativa de la literatura, utilizando las bases de datos BVS, CINAHL, SCOPUS, Web of Science, Embase y PUBMED, sin límites cronológicos, en portugués, inglés y español. Resultados: Los diagnósticos de enfermería de la clasificación NANDA 2021-2023 más prevalentes pertenecieron al dominio actividad/descanso, seguido por los dominios afrontamiento/tolerancia al estrés y seguridad/protección. Para cada diagnóstico prevalente, se establecieron intervenciones de enfermería plausibles en el contexto de la terminalidad. Conclusión: El protocolo de atención de enfermería al paciente terminal es un importante punto de partida para establecer comportamientos de enfermería y fomentar la práctica del cuidado al paciente terminal.(AU)
Subject(s)
Patient Care Planning , Nursing Diagnosis , Nursing, Private Duty , Hospice and Palliative Care NursingABSTRACT
Introducción: La COVID-19 exacerbó el déficit en la prestación de cuidados paliativos y de fin de vida y aumentó la sobrecarga de los servicios de salud, pero se desconoce la extensión de la literatura sobre dicho tema. Objetivo: Describir la evidencia sobre la prestación de cuidados paliativos y de fin de vida en adultos durante la pandemia de COVID-19. Materiales y métodos: Revisión de alcance según el marco metodológico de Arksey y O'Malley. La búsqueda se realizó en inglés y español; en PubMed, Scielo, la Biblioteca Virtual en Salud, y la base de datos de investigación en Coronavirus. Las publicaciones se filtraron por título, resumen y lectura completa. Los resultados se sintetizaron de acuerdo con la técnica "charting". Resultados: Se incluyeron 51 publicaciones. En total emergieron cinco categorías: 1) caracterización de los cuidados paliativos, 2) planificación avanzada de cuidados, 3) acompañamiento a familiares y seres queridos, 4) telesalud, 5) rol de enfermería en los cuidados paliativos. Discusión:: El coste social de la pandemia se refleja en el aumento en la carga de unidades de cuidados paliativos, mayor porcentaje de mortalidad y la disminución de la edad promedio de fallecimiento. Futuros estudios deben abordar el impacto psicosocial en los seres queridos de los pacientes, así como el impacto a nivel comunitario. Conclusión: Los cuidados paliativos y de fin de vida constituyen una herramienta fundamental para la atención de pacientes con COVID-19. La pandemia potenció el desarrollo de las tecnologías de la información y las comunicaciones para la prestación de cuidados paliativos.
Introduction:COVID-19 exacerbated the deficit of palliative and end-of-life care provision and increased healthcare services' burden, but the extent of the literature on that topic is unknown. Objetive: To describe the evidence of palliative and end-of-life care provision in adults during the COVID-19 pandemic. Materials and Methods:The scoping review was performed according to Arksey and O'Malley's methodological framework. The search was conducted in English and Spanish, in PubMed, SciELO, the Virtual Health Library, and the Coronavirus research database. The articles were filtered by title, abstract, and full text. The results were summarized according to the charting technique. Results: Fifty-one publications were included. A total of five categories emerged: 1) Palliative care characteristics, 2) advanced care planning, 3) support for family members and loved ones, 4) telehealth, and 5) nursing role in palliative care. Discussion:The social cost of the pandemic is reflected in the increased burden of palliative care units, higher mortality rates, and the decreased average age of death. Future studies should address the psychosocial impact of COVID-19 on patients' loved ones, as well as the impact at the community level. Conclusions: Palliative and end-of-life care is an essential tool for COVID-19 patients care. The pandemic has enhanced the development of information and communication technologies to deliver palliative care.
Introdução: A COVID-19 exacerbou o déficit na prestação de cuidados paliativos e em fim de vida e aumentou a sobrecarga sobre os serviços de saúde, mas a extensão da literatura sobre tal tópico é desconhecida. Objetivo: Descrever as evidências sobre a prestação de cuidados paliativos e de fim de vida em adultos durante a pandemia da COVID-19. Materiais e Métodos: Revisão do escopo de acordo com a estrutura metodológica de Arksey e O'Malley. A pesquisa foi realizada em inglês e espanhol; PubMed, Scielo, a Biblioteca Virtual de Saúde e o banco de dados de pesquisa do Coronavirus. As publicações foram filtradas por título, resumo e texto completo. Os resultados foram sintetizados de acordo com a técnica gráfica. Resultados: 51 publicações foram incluídas. No total, surgiram cinco categorias: 1) caracterização dos cuidados paliativos, 2) planejamento de cuidados avançados, 3) acompanhamento de parentes e entes queridos, 4) telesaúde, 5) papel de enfermagem nos cuidados paliativos. Discussão: O custo social da pandemia se reflete no aumento da carga sobre as unidades de cuidados paliativos, maiores taxas de mortalidade e uma diminuição da idade média de morte. Estudos futuros devem abordar o impacto psicossocial sobre os entes queridos dos pacientes, bem como o impacto a nível comunitário. Conclusões: Os cuidados paliativos e de fim de vida são uma ferramenta fundamental para o cuidado de pacientes com COVID-19. A pandemia tem melhorado o desenvolvimento das tecnologias de informação e comunicação para o fornecimento de cuidados paliativos.