Variability in the perception of palliative care and end-of-life care among hematology professionals from the same reference center in Bahia, Brazil: A descriptive cross-sectional study

ABSTRACT BACKGROUND: There are several illness-specific cultural and system-based barriers to palliative care (PC) integration and end-of-life (EOL) care in the field of oncohematology. OBJECTIVES: This study aimed to investigate the variability in the perceptions of PC and EOL care. DESIGN AND SETTING: A cross-sectional study was conducted in the Hematology Division of our University Hospital in Salvador, Bahia, Brazil. METHODS: Twenty physicians responded to a sociodemographic questionnaire and an adaptation of clinical questionnaires used in previous studies from October to December 2022. RESULTS: The median age of the participants was 44 years, 80% of the participants identified as female, and 75% were hematologists. Participants faced a hypothetical scenario involving the treatment of a 65-year-old female with a poor prognosis acute myeloid leukemia refractory to first-line treatment. Sixty percent of the participants chose to follow other chemotherapy regimens, whereas 40% opted for PC. Next, participants considered case salvage for the patient who developed septic shock following chemotherapy and were prompted to choose their most probable conduct, and the conduct they thought would be better for the patient. Even though participants were from the same center, we found a divergence from the most probable conduct among 40% of the participants, which was due to personal convictions, legal aspects, and other physicians' reactions. CONCLUSIONS: We found considerable differences in the perception of PC and EOL care among professionals, despite following the same protocols. The study also demonstrated variations between healthcare professionals' beliefs and practices and persistent historical tendencies to prioritize aggressive interventions.

Dificuldades dos enfermeiros no cuidar espiritual da pessoa em situação paliativa: uma scoping review / Difficulties Of Nurses In The SpiritualCare Of The Palliative Person: A Scoping Review

Objetivo: Mapear a evidência científica relativa às dificuldades dos enfermeiros no cuidar espiritual da pessoa em situação paliativa. Método: Estudo do tipo Scoping Review, com base nas recomendações PRISMA-ScR e do protocolo definido pelo Joanna Briggs Institute. Pesquisa em 4 bases de dados: Literatura Latino-Americana e do Caribe em Ciências da Saúde (LILACS), National Library of Medicine (PUBMED), Cummulative Index to Nursing and Allied Heath Literature (CINAHL) e Web of Science e considerados estudos dos últimos 5 anos. Resultado: Amostra final de 10 estudos. Foram identificadas várias dificuldades dos enfermeiros no cuidar espiritual da pessoa em situação paliativa, dos quais destacamos: falta de formação; falta de tempo; falta de reconhecimento; falta de confiança; evitamento; referenciação tardia; espiritualidade dos enfermeiros pouco desenvolvida; crenças diferentes. Conclusão: Foram identificadas múltiplas dificuldades sentidas pelos enfermeiros no cuidar espiritual, as quais passam quer por défices na formação, quer por défices organizacionais, quer por défices pessoais. (AU)

Objective: To map the scientific evidence concerning the difficulties faced by nurses in the spiritual care of palliative care patients. Method: Scoping Review, based on PRISMA-ScR recommendations and the protocol defined by the Joanna Briggs Institute. Search in 4 databases: Latin American and Caribbean Literature on Health Sciences (LILACS), National Library of Medicine (PUBMED), Cumulative Index to Nursing and Allied Heath Literature (CINAHL) and Web of Science and considered studies from the last 5 years. Result: Final sample of 10 studies. Several difficulties were identified among the nurses in the spiritual care of palliative patients, namely: lack of training; lack of time; lack of recognition; lack of trust; avoidance; late referral; nurses' spirituality underdeveloped; different beliefs. Conclusion: We identified multiple difficulties experienced by nurses in spiritual care, either due to deficits in training, organizational deficits, or personal deficits.(AU)

Mapear la evidencia científica sobre las dificultades experimentadas por las enfermeras en la atención espiritual de pacientes en cuidados paliativos. Método: Scoping Review, basado en las recomendaciones PRISMA-ScR y en el protocolo definido por el Instituto Joanna Briggs. Búsqueda en 4 bases de datos: Latin American and Caribbean Literature on Health Sciences (LILACS), National Library of Medicine (PUBMED), Cumulative Index to Nursing and Allied Heath Literature (CINAHL) y Web of Science. Resultado: Muestra final de 10 estudios. Se identificaron varias dificultades entre las enfermeras en la atención espiritual de los pacientes paliativos, a saber: falta de formación; falta de tiempo; falta de reconocimiento; falta de confianza; evitación; derivación tardía; espiritualidad de las enfermeras poco desarrollada; creencias diferentes. Conclusión: Se identificaron múltiples dificultades experimentadas por las enfermeras en la atención espiritual, que pueden explicarse por déficits formativos, organizativos y personales.(AU)

Cuidados al final de la vida: propuesta de atención primaria para el paciente con ERC avanzada

Contexto: en el marco de la salud pública en Colombia, se ha presentado un aumento significativo de personas que son diagnosticadas con enfermedad renal crónica y que requieren de comenzar algún tipo de terapia de reemplazo renal y sostenimiento. También se presentan otras patologías que disminuyen el nivel de calidad de vida de los pacientes como cáncer, insuficiencias cardiacas y diferentes tipos de demencias. Objetivo: los modelos tradicionales de atención de la enfermedad renal deben actualizarse y considerar, dentro de sus protocolos, el reconocimiento de la vida y la muerte digna como elementos que emergen dentro de la condición de salud-enfermedad de los pacientes; si esto se aborda de manera temprana, es posible prevenir hospitalizaciones con estancias prolongadas, así como alteraciones del estado del ánimo y otras complicaciones que pueden aumentar y acelerar la morbimortalidad de los pacientes. Metodología: este artículo nace a partir de la experiencia en la atención directa de pacientes con enfermedad renal crónica avanzada en un centro de cuidado renal de la ciudad de Medellín (Colombia) durante 7 años y de la revisión teórica de diferentes textos y artículos que se encuentran las bases de datos como Pubmed, Scopus, EBSCO, Dialnet, SciELO, entre otras. Resultados: se ofrece una propuesta de elementos para evaluar la condición de salud enfermedad del paciente por parte de un equipo interdisciplinario, liderado por el nefrólogo, para el diseño de la ruta de atención más adecuada en términos de costo-beneficio para el paciente y su familia y que estos tomen decisiones basadas en la información. Conclusiones: invertir en un programa de atención primaria en cuidados paliativos y al final de la vida de forma temprana resulta beneficioso para el paciente. El inicio de un programa de cuidados al final de la vida no significa renunciar o suspender el tratamiento dialítico; en su lugar, busca que la atención brindada se centre en las necesidades del paciente y en el adecuado control de los síntomas que se pueden presentar cuando se inicia la etapa de final de la vida.

Background: In the context of public health in Colombia, there has been a significant increase in the number of people diagnosed with chronic kidney disease and who require starting some type of renal replacement therapy and support. There are also other pathologies that reduce the quality of life of patients, such as cancer, heart failure and different types of dementia. Purpose: Traditional models of renal disease care should be updated and consider, within their protocols, the recognition of life and dignified death as elements that emerge within the health-disease condition of patients; if this is addressed early, it is possible to prevent hospitalizations with prolonged stays, as well as mood alterations and other complications that can increase and accelerate the morbimortality of patients. Methodology: This article is based on experience in the direct care of patients with advanced chronic kidney disease in a renal care center in the city of Medellin (Colombia) for 7 years and on the theoretical review of different texts and articles found in databases such as Pubmed, Scopus, EBSCO, Dialnet, SciELO, among others. Results: We offer a proposal of elements to evaluate the patient's health-disease condition by an interdisciplinary team, led by the nephrologist, for the design of the most adequate route of care in terms of cost-benefit for the patient and his family and for them to make decisions based on the information. Conclusions: Investing in a primary care program in palliative and end-of-life care early is beneficial for the patient. Initiating an end-of-life care program does not mean giving up or suspending dialysis treatment; instead, it seeks to focus the care provided on the patient's needs and on the adequate control of the symptoms that may occur when the end-of-life stage begins.

Decisiones en reanimación y cuidados de fin de vida en neonatos. Aspectos bioéticos (parte II) / Decisions concerning resuscitation and end-of-life care in neonates. Bioethical aspects (Part II)

La manera de enfrentar la muerte de un recién nacido requiere formación y reflexiones sobre el proceso de toma de decisiones de fin de vida, la comunicación con la familia y los cuidados que se proveerán. El objetivo de este artículo es profundizar aspectos salientes de bioética neonatal aplicados a situaciones de fin de vida en recién nacidos. En la primera parte, se exponen nociones de futilidad terapéutica, criterios de adecuación de cuidados, derechos de pacientes y de su familia, y conceptos acerca del valor de la vida. En la segunda parte, se analizan las situaciones que ameritan la consideración de adecuación de cuidados y se profundizan aspectos de la comunicación y el complejo proceso de toma de decisiones de fin de vida en recién nacidos.

Coping with the death of a newborn infant requires training and reflection regarding the end-of-life decision-making process, communication with the family, and the care to be provided. The objective of this article is to analyze in depth the salient aspects of neonatal bioethics applied to end-of-life situations in newborn infants. Part I describes notions of therapeutic futility, redirection of care criteria, patient and family rights, and concepts about the value of life. Part II analyzes situations that deserve considering the redirection of care and delves into aspects of communication and the complex process of end-of-life decision-making in newborn infants.

Ethical principles and dilemmas in the discourse of healthcare practitioners involved with end-of-life care based on the Advanced Directives Document / Principios y dilemas éticos en los discursos de los profesionales de la salud familiarizados con la atención al final de la vida a partir del documento de voluntades anticipadas

Abstract Introduction: The Advanced Directives Document (ADD) is an efficient tool to plan for future medical care in case of a potential loss of autonomy. Ethical dilemmas arise in end-of-life care, including the principle of respect for autonomy and potential beneficence involved in health care, leading to moral distress of practitioners. Objective: To identify the ethical principles and dilemmas arising from the discourse of healthcare practitioners involved with end-of-life care based on the ADD. Methods: Qualitative study with a hermeneutics approach based on 253 answers to the following exploratory question: Are you willing to respect the ADD of an unconscious patient when you think that the patient may benefit otherwise? Results: Most practitioners acknowledge their respect for the ADD as an ethical obligation, whilst a minority consider it a legal right. For the large majority of practitioners, the ethical principles of respect for the ADD are recognized under the ethical theory of liberal individualism. Respect for autonomy is associated with the principle of non-maleficence and the value of human dignity. The principle of beneficence and the quality of life concept were presented as genuine moral dilemmas. A reversible clinical condition, the request for euthanasia, the family and the legibility of anticipated directives were submitted as apparent moral dilemmas. Conclusions. During the end-of-life decision making process, there are other valid ethical considerations beyond principlism. The dilemmas identified show the ethical complexity healthcare practitioners face based on the ADD.

Resumen Introducción: El Documento de Voluntades Anticipadas (DVA) es una herramienta eficaz para planificar la futura atención médica ante la posible pérdida de autonomía. En la atención al final de la vida surgen dilemas éticos; entre los cuáles se destacan el principio de respeto a la autonomía y la posible beneficencia que implica la atención en salud que conlleva angustia moral en los profesionales. Objetivo: Identificar los principios y dilemas éticos que emergen de los discursos de los profesionales de la salud familiarizados con la atención al final de la vida a partir del DVA. Metodología: Estudio cualitativo con enfoque hermenéutico de 253 respuestas a la pregunta exploratoria: ¿Está usted dispuesto a respetar un DVA en paciente inconsciente cuando usted cree que el paciente se beneficiaría de lo contrario? Resultados: Los profesionales en su mayoría reconocen el respeto al DVA como obligación ética, para una minoría como un derecho legal. Para la mayoría, los principios éticos de respeto al DVA se reconocen bajo la teoría ética del individualismo liberal. El respeto al agente autónomo se correlaciona con el principio de no maleficencia y el valor de la dignidad humana. El principio de beneficencia y el concepto de calidad de vida fueron expuestos como auténticos dilemas morales. La condición clínica reversible, la solicitud de eutanasia, la familia y la legibilidad de las voluntades anticipadas fueron expuestos como aparentes dilemas morales. Conclusiones: En el proceso de toma de decisiones al final de la vida existen otras perspectivas éticas válidas más allá del principialismo. Los dilemas identificados muestran la complejidad ética a la que se enfrentan los profesionales de la salud a partir del DVA.

Decisiones en reanimación y cuidados de fin de vida en neonatos. Aspectos bioéticos (parte I) / Decisions concerning resuscitation and end-of-life care in neonates. Bioethical aspects (Part I)

La manera de enfrentar la muerte de un recién nacido requiere formación y reflexiones sobre el proceso de toma de decisiones de fin de vida, la comunicación con la familia y los cuidados que se proveerán. El objetivo de este artículo es profundizar aspectos salientes de bioética neonatal aplicadas a situaciones de fin de vida en recién nacidos. En la primera parte, se exponen nociones de futilidad terapéutica, criterios de adecuación de cuidados, derechos de pacientes y de su familia, y conceptos acerca del valor de la vida. En la segunda parte, se analizan las situaciones que ameritan la consideración de adecuación de cuidados y se profundizan aspectos de la comunicación y el complejo proceso de toma de decisiones de fin de vida en recién nacidos.

Coping with the death of a newborn infant requires training and reflection regarding the end-of-life decision-making process, communication with the family, and the care to be provided. The objective of this article is to analyze in depth the salient aspects of neonatal bioethics applied to end-of-life situations in newborn infants. Part I describes notions of therapeutic futility, redirection of care criteria, patient and family rights, and concepts about the value of life. Part II analyzes situations that deserve considering the redirection of care and delves into aspects of communication and the complex process of end-of-life decision-making in newborn infants.

Nurses’ Attitudes Towards Ambiguity in Communication with Patients and Families, Emotional Coping Strategies and Attitudes Towards End-Of-Life Care in General Wards

Purpose: We clarified the relationship between attitudes towards ambiguity in nurses’ communication with patients and families, emotional coping strategies and attitudes towards end-of-life care among nurses in general wards. Methods: Requests for participation in a survey were sent to nurses working in general wards with 3 or more years of work experience. The survey was in the form of an online self-administered questionnaire. Results: The responses of the 239 nurses who answered the survey were subject to analysis. Among nurses’ attitudes towards ambiguity, the highest scores were for “control of ambiguity” followed by “enjoyment of ambiguity.” Among emotional coping strategies, the highest scores were for “regulating both patients’ and one’s own emotions.” “Positive attitudes toward caring for dying persons” was most significantly associated with “enjoyment of ambiguity.” “Recognition of caring for the pivot dying persons and his families” was most significantly associated with “regulating both patients’ and one’s own emotions.” Conclusion: The results suggest that nurses working in general wards may need to foster attitudes towards “enjoyment of ambiguity” in communication with patients and families, and also coping abilities “regulating both patients’ and one’s own emotions”, so that they can enhance the attitude toward end-of-life care.

Palliative care and end of life care in Latin America: scoping review

INTRODUCTION: Populational aging and improved treatments for chronic non-communicable diseases extend life expectancy but not always quality of life. By 2060, 48 million people are expected to die of serious illnesses, and 83% of these deaths will occur in developing countries. Only 14% of those who needed palliative care receive it. AIM: To describe the methodological trends, thematic areas, populations studied, and future challenges in Latin American regions with respect to adult palliative care. METHODS: A scoping review of 60 articles from 2010 to 2019 in indexed journals in English, Spanish, and Portuguese was conducted. RESULTS: Most articles were from Brazil, Colombia, and Mexico. Patients, caregivers, healthcare professionals, and students constituted the primary study population. Quality of Life, knowledge, and costs of attention were also assessed. It appears that early palliative care improves the outcomes of patients, caregivers, and health care professionals, however, the disparity in palliative care services between Latin America, US, UK, Canada, and Spain is concerning. CONCLUSIONS: Globally, more palliative care is needed, especially in Latin America. However, there are not enough graduate palliative care programs. Academic palliative care education must be promoted. Communication between the interdisciplinary team, the patient, and the caregiver is critical. While the region's scientific literature output has improved, many knowledge gaps remain. For patients' sake, governments should regulate, create, and facilitate palliative care services.

Cuidados al final de la vida en la unidad de cuidados intensivos: revisión de alcance / End-of-Life Care in the Intensive Care Unit: Scope Review / Cuidados de final de vida na unidade de terapia intensiva: revisão de escopo

Introducción: los cuidados al final de la vida en la Unidad de Cuidado Intensivo (UCI) están orientados a ofrecer atención a la persona que está cerca del final su vida, su objetivo es aliviar el sufrimiento y atender sus necesidades mentales, emocionales y espirituales. Objetivo: identificar los cuidados al final de la vida del paciente adulto en las UCI. Metodología: se realizó una revisión de literatura tipo scoping review, siguiendo el PRISMA-ScR. Se hizo la búsqueda de artículos en español, inglés y portugués en 16 bases de datos durante el periodo 2001-2022. La extracción y selección de datos se realizó con la herramienta web Rayyan. Finalmente, se seleccionaron 35 artículos. Resultados: el idioma predominante de los artículos seleccionados fue inglés (82 %), y el país de mayor procedencia fue Estados Unidos (31 %). Los resultados se presentaron en tres temáticas: a) cuidados al paciente, b) cuidados a la familia, y c) percepciones del personal de salud. Conclusiones: se encontró que los cuidados al final de la vida que más se reportan son el uso de fármacos como morfina, midazolam y lorazepam, así como la comunicación temprana entre el personal de salud, el paciente y su familia. Dentro de los cuidados, enfermería tiene un rol muy importante, pues esta brinda la atención de manera holística, al ser orientadora y educadora y al dar acompañamiento integral a la familia durante y después del proceso del final de vida.

Introduction: End-of-life care in the Intensive Care Unit (ICU) is aimed at offering care to the person who is near the end of their life, and its objective is to alleviate suffering and attend to mental, emotional and spiritual needs. Objective: Identify end-of-life care for adult patients in ICUs. Method: Scoping review of the literature was carried out following the PRISMA-ScR. A search was made for articles in Spanish, English and Portuguese in 16 databases during the period 2001-2022. The extraction and selection of data were carried out using the Rayyan web tool. Finally, 35 articles were selected. Results: The predominant language of the selected articles was English (82 %), and the country of origin was United States (31 %). The results were presented in three categories: a) patient care, b) family care, and c) perceptions of health personnel. Conclusions: The most reported end-of-life care is the use of drugs such as morphine, midazolam and lorazepam, as well as early communication between health personnel, patients and their families. Within care, nursing has a very important role, since it provides care in a holistic way, being a guide and educator, and providing comprehensive support to the family during and after the end-of-life process.

Introdução: os cuidados de fim de vida na Unidade de Terapia Intensiva (UTI) visam oferecer cuidados à pessoa que se aproxima do fim da vida, e cujo objetivo é aliviar o sofrimento e atender às suas necessidades mentais, emocionais e espirituais. Objetivo: identificar os cuidados de fim de vida para pacientes adultos em UTI. Método: foi realizada uma scoping review da literatura seguindo o PRISMA-ScR. Foi feita uma busca de artigos em espanhol, inglês e português em 16 bases de dados durante o período 2001-2022. A extração e seleção de dados foi realizada usando a ferramenta web Rayyan. Ao final, foram selecionados 35 artigos. Resultados: o idioma predominante dos artigos selecionados foi o inglês (82 %) e o país de maior procedência foram os Estados Unidos (31 %). Os resultados foram apresentados em três temas: a) assistência ao paciente, b) assistência à família ec) percepções do pessoal de saúde. Conclusões: constatou-se que os cuidados de fim de vida mais relatados são o uso de medicamentos como morfina, midazolam e lorazepam, bem como a comunicação precoce entre profissionais de saúde, pacientes e seus familiares. No cuidado, a enfermagem tem um papel muito importante, pois presta cuidados de forma holística, sendo orientadora e educadora, e dando suporte integral à família durante e após o processo de terminalidade da vida.

End-of-life care in Brazilian Pediatric Intensive Care Units

Abstract Objective Most deaths in Pediatric Intensive Care Units involve forgoing life-sustaining treatment. Such deaths required carefully planned end-of-life care built on compassion and focused on palliative care measures. This study aims to assess topics related to the end of life care in Brazilian pediatric intensive care units from the perspective of a multidisciplinary team. Method The authors used a tested questionnaire, utilizing Likert-style and open-ended questions. After ethics committee approval, it was sent by email from September to November/2019 to three Pediatric Intensive Care Units in the South and Southeast of Brazil. One unit was exclusively dedicated to oncology patients; the others were mixed units. Results From 144 surveys collected (23% response rate) 136 were analyzed, with 35% physicians, 30% nurses, 21% nurse technicians, and 14% physiotherapists responding. Overall, only 12% reported enough end-of-life care training and 40% reported never having had any, albeit this was not associated with the physician's confidence in forgoing life-sustaining treatment. Furthermore, 60% of physicians and 46% of other professionals were more comfortable with non-escalation than withdrawing therapies, even if this could prolong suffering. All physicians were uncomfortable with palliative extubation; 15% of all professionals have witnessed it. The oncologic team uniquely felt that "resistance from the teams of specialists" was the main barrier to end-of-life care implementation. Conclusion Most professionals felt unprepared to forego life-sustaining treatment. Even for terminally ill patients, withholding is preferred over the withdrawal of treatment. Socio-cultural barriers and the lack of adequate training may be contributing to insecurity in the care of terminally ill patients, diverging from practices in other countries.

Intervenciones de terapia ocupacional con personas mayores en procesos finales de vida en hospitales públicos / Intervenções de terapia ocupacional com pessoas idosas em processos de fim de vida em hospitais públicos / Occupational therapy interventions with elderly people at the end-of-life processes in public hospitals

Resumen Introducción La intervención de terapia ocupacional con personas mayores en procesos de fin de vida en contextos hospitalarios presenta escasa documentación científica en Chile. Dado el aumento de la población mayor, la alta prevalencia de enfermedades crónicas en ella y las tasas de mortalidad hospitalaria, se identifica la necesidad de revisar las intervenciones que se realizan en los procesos de fin de vida de las personas mayores. Objetivo Caracterizar intervenciones de terapia ocupacional con personas mayores que cursan su proceso de fin de vida, desde la percepción de terapeutas ocupacionales dedicados/as al área, en contextos hospitalarios públicos de Chile. Método La investigación es de tipo cualitativa enmarcada dentro del paradigma constructivista bajo el enfoque fenomenológico, utilizando como técnica de recolección de información la entrevista semiestructurada y posterior análisis de contenido. La muestra de estudio está compuesta por terapeutas ocupacionales que ejercen su labor en hospitales públicos del país. Resultados Se identifica a terapeutas ocupacionales como agentes que otorgan cuidados humanizantes y acompañamiento durante las intervenciones en procesos de fin de vida, y a las familias como un facilitador del mismo. Se releva una visión integral de la persona en estos procesos. Conclusiones Existe consenso en el enfoque e intervenciones de terapia ocupacional identificadas por las/os participantes, y resulta similar a lo descrito en la literatura internacional. Faltan lineamientos de política pública local que permitan definir de mejor manera el rol profesional en este contexto.

Resumo Introdução A intervenção da terapia ocupacional com idosos nos processos de fim de vida em contextos hospitalares apresenta pouca documentação científica no Chile. Diante do aumento da população idosa, da alta prevalência de doenças crônicas nesta população e das taxas de mortalidade hospitalar, identifica-se a necessidade de rever as intervenções realizadas nos processos de fim de vida do idoso. Objetivo Caracterizar as intervenções de terapia ocupacional com idosos em processo de fim de vida, a partir da percepção de terapeutas ocupacionais da área, em contextos hospitalares públicos no Chile. Método A pesquisa é do tipo qualitativo na perspectiva do paradigma construtivista sob a abordagem fenomenológica, utilizando-se de entrevista semiestruturada como técnica de coleta de informações e posterior análise de conteúdo. A amostra do estudo é composta por terapeutas ocupacionais que atuam em hospitais públicos no Chile. Resultados Os terapeutas ocupacionais são identificados como agentes que prestam atendimento humanizado e apoio durante as intervenções nos processos de fim de vida, e à família, principalmente como facilitadora deste processo. Nesses momentos, revela-se uma visão integral da pessoa. Conclusões Há consenso sobre a abordagem e intervenções da terapia ocupacional identificadas pelos participantes, sendo semelhante ao descrito na literatura estrangeira. Faltam diretrizes de políticas públicas locais que permitam uma melhor definição do papel do profissional nesse contexto.

Abstract Introduction The intervention of occupational therapy with elderly people in end-of-life processes in hospital contexts presents short scientific documentation in Chile. Given the increase in the elderly population, their high prevalence of chronic diseases, and the hospital mortality rates, the need to review the interventions carried out in the end-of-life processes of the elderly are identified. Objective To characterize occupational therapy interventions with elderly people who are in their end-of-life process, from the perception of occupational therapists dedicated to the area, in public hospital contexts in Chile. Method The research is of a qualitative type framed within the constructivist paradigm under the phenomenological approach, using the semi-structured interview as an information collection technique and subsequent content analysis. The study sample is made up of occupational therapists who work in public hospitals in the country. Results Occupational therapists are identified as agents that provide humanizing care and support during interventions in end-of-life processes, and families mainly as a facilitator of the same. In these processes, an integral vision of the person is revealed. Conclusions There is consensus on the occupational therapy approach and interventions identified by the participants, and it is similar to what is described in the international literature. There is a lack of local public policy guidelines that allow a better definition of the professional role in this context.

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.

Continue with ICU care – she is a spiritual being

This case study discusses a dispute between the healthcare team and the patient’s surrogate decision maker at a cancer centre. While the healthcare team deemed further care to be futile, the patient’s husband argued that they should continue to try to reverse his wife’s acute decline. This case study illustrates the inertia and moral distress that can result when there are differences between patients/surrogates and the healthcare team in their goals for intensive care. The issues of moral distress and an inability to make decisions were addressed by involving an ethics consultant, and by creating institutional mechanisms to address end-of-life issues at an earlier stage

Determining factors for making complex decisions in patients with advanced chronic diseases. A palliative care perspective / Factores determinantes para la toma de decisiones complejas en pacientes con enfermedades crónicas avanzadas. Una mirada desde los cuidados paliativos

Abstract Decision making is a challenge faced by physicians in clinical practice. It requires a profound analysis of all the different factors which may influence the choice of treatment or diagnostic interventions. Factors related to the patients and their environment, the availability of resources, the clinician, and the proper handling of care information. The decision-making process becomes more complex in patients with advanced diseases or in the final stage of life, and requires a comprehensive approach by a professional trained in the communication process and in an empathic doctor-patient relationship which allows the participation of the patients and their families, as well as an acknowledgement of their wishes. It is imperative to engage in discussions regarding the prognosis, terminality and therapeutic goals, which are determining factors in this process and are discussed in this review. (Acta Med Colomb 2022; 47. DOI:https://doi.org/10.36104/amc.2022.2254).

Resumen La toma de decisiones es un reto que enfrenta el médico en la práctica clínica. Requiere un análisis profundo de todos los diferentes factores que pueden influir en la elección de tratamientos o intervenciones diagnósticas. Factores relacionados con el paciente y su entorno, con la disponibi lidad de recursos, con el clínico y con el manejo correcto de la información sobre los cuidados. El proceso de toma de decisiones se vuelve más complejo en pacientes con enfermedades avanzadas o en la fase final de la vida y requiere estrictamente el abordaje integral por un profesional capa citado en el proceso de comunicación y en una relación médico-paciente empática que permita la participación del paciente y su familia, así como el reconocimiento de sus deseos. Es imperativa la introducción de discusiones acerca de pronóstico, terminalidad y objetivos terapéuticos, que son factores determinantes para este proceso y son discutidos en esta revisión. (Acta Med Colomb 2022; 47. DOI:https://doi.org/10.36104/amc.2022.2254).

Institutional end-of-life care policy for inpatients at a tertiary care centre in India: A way forward to provide a system for a dignified death

India has a high share in the global burden of chronic terminal illnesses. However, there is a lack of a uniform system in providing better end-of-life care (EOLC) for large patients in their terminal stage of life. Institutional policies can be a good alternative as there is no national level policy for EOLC. This article describes the important aspects of the EOLC policy at one of the tertiary care institutes of India. A 15 member institutional committee including representatives from various departments was formed to develop this institutional policy. This policy document is aimed at helping to recognize the potentially non-beneficial or harmful treatments and provide transparency and accountability of the process of limitation of treatment through proper documentation that closely reflects the Indian legal viewpoint on this matter. Four steps are proposed in this direction: (i) recognition of a potentially non-beneficial or harmful treatment by the physicians, (ii) consensus among all the caregivers on a potentially non-beneficial or harmful treatment and initiation of the best supportive care pathway, (iii) initiation of EOLC pathways, and (iv) symptom management and ongoing supportive care till death. The article also focuses on the step-by-step process of formulation of this institutional policy, so that it can work as a blueprint for other institutions of our country to identify the infrastructural needs and resources and to formulate their own policies.

Validation of Malay Language Translated Questionnaire on Adult Intensive Care Unit Nurses’ Perception and Involvement in End-of-life Care

@#Introduction: The study’s objective was to validate a Malay language translated questionnaire on end-of-life care to be used among nurses practicing in critical care areas. Methods: The English language questionnaire underwent forward and backward translations by four experts. The translated Malay language questionnaire was pilot tested on 30 subjects and revised accordingly. The validation of the revised questionnaire was carried out on 250 nurses. The reliability of the translated questionnaire was checked. Cronbach alpha value of at least 0.70 suggests adequate internal consistency. The validity of the questionnaire was explored using Confirmatory Factor Analysis (CFA) and model fit tests were run to achieve fit test specific cut off values. The CFAs were run repeatedly with iterative item reductions until acceptable goodness of fit for the model was achieved. Results: All domains of the translated questionnaire showed reasonable to excellent reliability (Cronbach Alpha 0.687 to 0.922). Multiple CFAs were run and 13 out of 46 items were excluded, and the final model fit improved substantially with the indices were within the acceptable threshold of good or reasonably fit, cut off values are in brackets [Chi-Square statistics 1.635 (≤ 2.0), Root Mean Square Error of Approximation 0.050 (< 0.05), Standardised Root Mean Square Residual 0.059 (≤ 0.08), Comparative Fit Index 0.911 (0.90-0.94), Tucker Lewis Index 0.900 (0.90-0.94), Akaike Information Criteria 13024, Bayesian Information Criteria 13334]. Conclusion: The psychometric properties of the final model indicated the Malay language translated questionnaire is reliable and valid to investigate nurses’ perspective and involvement in end-of-life care.

Public Prognosis Explanations, End-of-life Care, Decision-maker Hopes, and Related Factors

Purpose: This study clarified the general public’s end-of-life decision-making expectations and related factors. Method: We analyzed secondary data of 1,000 adults surveyed through the Internet. The outcome was to determine the life expectancy at the end of life, end-of-life care, and decision-makers’ wishes. Results: Regarding the prognosis, 54% wanted to know the life expectancy in end-of-life. This preference was independently associated with being notified of cancer at a young age, trust in medical professionals, and the view of life and death that disappears. Regarding end-of-life care preferences, 11% requested active treatment, and 58% requested palliative care. This preference was independently associated with older age, women, and an emphasis on being pain-free and being yourself. Regarding decision-makers’ preferences, 77% wanted to decide for themselves, and 11% wanted to decide for their families. This preference was independently associated with the young, carefree of life and death, who did not want to be notified of cancer. Conclusion: We revealed the general public’s desire for end-of-life decision-making and associated factors. In clinical practice, it can be used for screening.

Health care professionals and end-of-life care during the COVID-19 pandemic

SUMMARY OBJECTIVE: The aim of this study was to estimate self-perception of anguish and low quality of life among health care professionals who cared for the dying patients during the COVID-19 pandemic and to determine the characteristics of health care professionals and patients and end-of-life care. METHODS: An online survey that included health care professionals who cared for the dying patient from July 1 to October 31, 2020 was conducted. Low quality of life, anguish, characteristics of patients and health care professionals, and end-of-life care were recorded. Poisson regression was performed to assess the predictors of anguish and low quality of life. RESULTS: A total of 102 health care professionals, including 14 males (13.7%), with a median age of 37 years, composed of 41 physicians (40.2%), 36 physiotherapists (35.3%), and 25 nurses (24.5%) were included in this study. Self-perception of anguish occurred in 69.6% and was associated with physicians and disagreement with end-of-life care offered. Low quality of life was reported in 64.7% and was associated with not having time to talk to patients' relatives. The agreement that medical care was enough reduced self-perception of low quality of life. CONCLUSION: Self-reported anguish was more frequent in physicians and when the disagreement about end-of-life care occurred. Low quality of life was more frequent when health care professionals did not have time to talk to patients' relatives and was less frequent when health care professionals agreed that medical care was enough. Strategies should be done by health services to reduce the impact of the pandemic on health care professionals.

Fonoaudiología en cuidados paliativos para adultos y adultos mayores: fundamentos, roles, abordajes y desafíos / Speech-language pathology in palliative care for adults and older adults: foundations, roles, approaches, and challenges

La población chilena envejece rápidamente, lo cual se traduce en un incremento en el número de personas que vive con alguna enfermedad crónica que limita su vida, condición que requiere frecuentemente de equipos especializados en cuidados paliativos. En ellos, la inclusión del/la fonoaudiólogo/a a nivel internacional es reciente, aún más en nuestro país. Por lo anterior, son escasas las orientaciones locales que faciliten la activa participación de este profesional bajo un modelo centrado en el cuidado, bienestar y acompañamiento de la persona, su familia y/o personas significativas. En este contexto, es objetivo de esta revisión narrativa el profundizar sobre los fundamentos que soportan la inclusión del/a fonoaudiólogo/a en equipos de cuidados paliativos. Para lo anterior se describen las áreas de acción fonoaudiológica, sus roles y responsabilidades. Al respecto, la información disponible da cuenta de dos grandes campos de acción, vinculados a la comunicación y alimentación, los que deben ser abordados con el propósito de fomentar la participación y autonomía de la persona en la toma de decisiones sobre sus cuidados y el respeto de sus voluntades anticipadas, cuando sea necesario. Bajo este paradigma, los hallazgos son claros en plantear que el/la fonoaudiólogo/a debe alejarse del modelo rehabilitador tradicional, para migrar hacia un grupo de acciones que le permitan abordar ­de la mejor manera posible­aquellas condiciones que generan sufrimiento, dolor o molestia a la persona. Dichas acciones son abordadas en esta revisión, con el detalle suficiente para permitir enunciar y proponer seis grandes desafíos para aquello/as profesionales que se desempeñan (o desean hacerlo) en el área.

The Chilean population is aging rapidly, generating a sustained increase in the number of people living with a chronic disease that limits their life, condition that frequently requires specialized teams in palliative care. In these, the inclusion of the speech-language pathologist is recent in most of the countries, even more so in our country. Therefore, there are few local guidelines that facilitate the active participation of this professional under a model focused on the care, well-being and accompaniment of the person, their family and/or significant others. In this context, the objective of this narrative review is to delve into the foundations that support the inclusion of the speech-language pathologist in palliative carea teams. For this, speech-language pathology action areas, roles and responsibilities are described. In this regard, the available information shows two major fields of action. related to communication and swallowing, which must be addressed in orden to promote the participation and autonomy of the person in making decisions about their care, as well as respect for their advance directives, when necessary.Under this paradigm, the findings are clear in stating that the speech-language pathologist should move away from the traditional rehabilitation model, to migrate towards a group of actions that aloe them to address -in the best possible way-those conditions that generate suffering, pain or discomfort to the person. These actions are addressed in this review, with sufficient detail to allow six major challenges to be raised and proposed for those professionals who work (or want to) in the area.

Cuidados paliativos e demência avançada: trajetória de idosos hospitalizados nas últimas 48h de vida / Palliative care and advanced dementia: trajectory of hospitalized elderly people in their last 48 hours of life

Analisar as últimas 48h de vida de idosos com demência avançada hospitalizados e o perfil de cuidados ao longo dos 5 anos analisados. Trata-se de um estudo transversal retrospectivo, através da análise de prontuários eletrônicos dos pacientes participantes do estudo, e que foram a óbito entre 01 janeiro de 2013 e 31 de dezembro de 2017. Foram analisados 328 prontuários no período definido e 97 preencheram os critérios de inclusão. Noventa e três pacientes (95,9%) tiveram registro de diretrizes antecipadas de vontade, 73,2% eram do sexo feminino, com idade média de 88,7 anos, 52,6% dos óbitos ocorreram em apartamento ou enfermaria, nas últimas 48h de vida, 64,9% estavam com dieta por sonda, 28,9% respirando com assistência ventilatória mecânica, 51% usando antibiótico, 86,6% com prescrição de analgesia fixa, contudo 19% tinham registro de dor não controlada. Ao longo dos 5 anos de observação, houve mudanças nos seguintes aspectos: redução de óbitos na unidade de terapia intensiva (60% x 36,4%), diminuição do uso de dieta por sondas (87% x 32%), do uso de assistência ventilatória mecânica (53% x 18%); do uso de cateter venoso central (47% x 27%); do uso de sonda vesical de demora (27% x 5%), e da presença de lesão por pressão (87% x 45%). Conclui-se que nos 5 anos de análise, uma tendência paliativista na assistência, caracterizada pela redução de procedimentos considerados invasivos, nas últimas 48h de vida, em pacientes com demência avançada.

This study aimed to analyze the last 48 hours of life of hospitalized elderly with advanced dementia and the profile of care over the 5 years analyzed. This is a retrospective cross-sectional study, through the analysis of electronic medical records of patients participating in the study, who died between January 1, 2013 and December 31, 2017. 328 medical records were analyzed in the defined period and 97 met the inclusion criteria. Ninety-three patients (95.9%) had records of advance directives of their wills, 73.2% were female, with a mean age of 88.7 years, 52.6% of deaths occurred in an apartment or infirmary, in the latter 48h of life, 64.9% were on an enteral diet, 28.9% were breathing by mechanical ventilation, 51% were using antibiotics, and 86.6% were prescribed fixed analgesia; however, 19% had a record of uncontrolled pain. Over the 5 years of observation, there were changes in the following aspects: reduction of deaths in the intensive care unit (60% vs. 36.4%), decrease in the use of tube feeding (87% vs. 32%), in the use of mechanical ventilation (53% vs. 18%); the use of central venous catheter (47% vs. 27%); the use of permanent urinary catheter (27% vs. 5%), and the presence of pressure injuries (87% vs. 45%). It is concluded that in the 5 years of analysis a palliative trend in care was characterized by the reduction of procedures considered invasive, in the last 48 hours of life, in patients with advanced dementia.