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.

Portuguese Advance Directives-a twist against futility? A cross sectional study

ABSTRACT BACKGROUND: Advance Directive documents allow citizens to choose the treatments they want for end-of-life care without considering therapeutic futility. OBJECTIVES: To analyze patients' and caregivers' answers to Advance Directives and understand their expectations regarding their decisions. DESIGN AND SETTING: This study analyzed participants' answers to a previously published trial, conceived to test the document's efficacy as a communication tool. METHODS: Sixty palliative patients and 60 caregivers (n = 120) registered their preferences in the Advance Directive document and expressed their expectations regarding whether to receive the chosen treatments. RESULTS: In the patient and caregiver groups, 30% and 23.3% wanted to receive cardiorespiratory resuscitation; 23.3% and 25% wanted to receive artificial organ support; and 40% and 35% chose to receive artificial feeding and hydration, respectively. The participants ignored the concept of therapeutic futility and expected to receive invasive treatments. The concept of therapeutic futility should be addressed and discussed with both the patients and caregivers. Legal Advanced Directive documents should be made clear to reduce misinterpretations and potential legal conflicts. CONCLUSION: The authors suggest that all citizens should be clarified regarding the futility concept before filling out the Advance Directives and propose a grammatical change in the document, replacing the phrase "Health Care to Receive / Not to Receive" with the sentence "Health Care to Accept / Refuse" so that patients cannot demand treatments, but instead accept or refuse the proposed therapeutic plans. TRIAL REGISTRATION: ClinicalTrials.gov ID NCT05090072 URL: https://clinicaltrials.gov/ct2/show/NCT05090072.

Toma de decisiones para la adecuación del esfuerzo terapéutico al final de la vida en pacientes oncológicos del instituto Nacional de Cancerología de Colombia

Propósito: la adecuación del esfuerzo terapéutico es una decisión clínica basada en la evidencia que pretende evitar la futilidad médica. Se han señalado diferentes factores que pueden influir en esta toma de decisiones los cuales se relacionan con el paciente, el profesional médico que toma de las decisiones, barreras del sistema, cultura y economía, entre otros. El presente estudio pretende identificar aquellos factores que influyen en los médicos especialistas que laboran en la institución referente del cáncer en Colombia, a fin de planear acciones que mejoren el abordaje de la toma de decisiones con respecto a la adecuación del esfuerzo terapéutico en pacientes con cáncer. Metodología: diseño cualitativo basado en 13 entrevistas en profundidad a médicos especialistas del Instituto Nacional de Cancerología de Colombia. Resultados: participaron 3 mujeres y 10 hombres, con un promedio de edad de 36 años, 7 pertenecientes a la especialidad de oncología de adultos, 2 a oncohematología pediátrica, 1 a cuidados intensivos de adultos y 3 a cuidados intensivos pediátricos. Los factores hallados se agruparon en cuatro categorías: 1) conocimiento, 2) aspectos relacionados con la toma de decisiones, 3) quién decide, 4) tipo de decisión que se toma; a su vez, estas categorías se agruparon en temas que hacen alusión a los factores que influyen en la toma de decisiones de los especialistas para adecuar los esfuerzos terapéuticos. Conclusión: la adecuación de los esfuerzos terapéuticos es importante para evitar procedimientos médicos fútiles que prolonguen el sufrimiento. Se evidenciaron algunos factores que influyen en la toma de decisiones de los especialistas: falta de preparación de los profesionales de salud en el tema de toma de decisiones al final de la vida, uso reducido de escalas que permitan mejorar la información del pronóstico y desconocimiento sobre voluntades anticipadas; estos son algunos de aquellos factores que deben fortalecerse para generar acciones que mejoren el abordaje de esta temática.

Purpose: Adjusting therapeutic efforts is an evidence-based clinical decision that aims to avoid medical futility. Varied factors that can influence this decision-making have been pointed out, related to the patient, the medical professional who makes the decisions, system barriers, culture, and the economy, among others. The present study aims to identify those factors that help the specialists working in a cancer referral institution in Colombia to plan actions that improve the approach to decision-making regarding the adequacy of therapeutic efforts in cancer patients. Methodology: This qualitative design is based on 13 in-depth interviews with Colombia's National Cancer Institute specialists. Results: Three women and ten men participated, with an average age of 36 years; seven belonged to the specialty of adult oncology, two to pediatric oncohematology, one to adult intensive care, and three to pediatric intensive care. The factors found were grouped into four categories: 1) knowledge, 2) aspects related to decision-making, 3) the decision-maker, and 4) the type of decision made. These categories were clustered into themes that allude to the factors swaying specialists' decision-making to adjust therapeutic efforts. Conclusion: Adjusting therapeutic actions is vital to avoid futile medical procedures that prolong suffering. Some factors that influence the specialists' decision-making were noted: lack of preparation of health professionals on end-of-life decision-making, reduced use of scales to improve prognostic information, and ignorance about advance directives. These factors must be strengthened to improve the approach to this issue.

Introdução: a adequação do esforço terapêutico é uma decisão clínica baseada em evidências que pretende evitar a futilidade médica. Diferentes fatores que podem influenciar nessa tomada de decisão vêm sendo identificados e estão relacionados com o paciente, com o profissional médico que toma as decisões, com as barreiras do sistema, com a cultura e a economia, entre outros. Objetivo: este estudo pretende identificar aqueles fatores que influenciam os médicos especialistas que trabalham na instituição referente do câncer na Colômbia, a fim de propor ações que melhorem a abordagem da tomada de decisões a respeito da adequação do esforço terapêutico em pacientes com câncer. Metodologia: desenho qualitativo baseado em 13 entrevistas em profundidade com médicos especialistas do Instituto Nacional de Cancerologia da Colômbia. Resultados: participaram 3 mulheres e 10 homens, com média de idade de 36 anos - 7 pertencentes à especialidade de oncologia de adultos; 2, onco-hematologia pediátrica; 1, terapia intensiva de adultos e 3, terapia intensiva pediátrica. Os fatores achados foram agrupados em quatro categorias: 1) conhecimento; 2) aspectos relacionados com a tomada de decisões; 3) quem decide; 4) tipo de decisão tomada. Por sua vez, essas categorias foram agrupadas em temas que fazem alusão aos fatores que influenciam a toma de decisões dos especialistas para adequar os esforços terapêuticos. Conclusões: a adequação dos esforços terapêuticos é importante para evitar procedimentos médicos fúteis que prolonguem o sofrimento. Foram evidenciados alguns fatores que influenciam a tomada de decisões dos especialistas: falta de preparação dos profissionais de saúde no tema, uso reduzido de escalas que permitam melhorar a informação do prognóstico e desconhecimento sobre vontades antecipadas; estes são alguns dos fatores que devem ser fortalecidos para gerar ações que melhorem a abordagem da temática.

El sufrimiento frente a la etapa final de la vida

La complejidad de una enfermedad terminal pone en evidencia la vulnerabilidad del ser humano ante el dolor y el sufrimiento, y acentúa la crisis subjetiva que acompaña no solo al paciente, sino también al médico que lo asiste. Revisamos la propuesta de un estudio posicionado en la ética del cuidado de quienes necesitan atención integral en el final de la vida. Nos referimos a la investigación titulada "Final de vida, cuidados paliativos y empatía. Manejo de la empatía como recurso fundamental frente a la toma de decisiones al final de la vida" 1. Un extracto de dicho trabajo señala la importancia de que los médicos puedan ubicar el sufrimiento del paciente separado de ellos mismos, de manera que sostengan una resonancia empática que los posicione con capacidad para entrar en el mundo del paciente y su enfermedad, con firmeza personal y profesional. Definimos un espacio de reflexión acerca del sentido del sufrimiento, su correlato en la práctica clínica y un argumento fundamental al momento de proponer una legislación vinculada al final de la vida.

The complexity of a terminal illness highlights the vulnerability of the human being to pain and suffering. It accentuates the subjective crisis that accompanies the patient and the doctor who assists him. We reviewed the proposal for a study on the ethics of care of those who need comprehensive care at the end of life. An excerpt from it points out the importance of doctors being able to place the patient's suffering separate from themselves, maintaining an empathic resonance that positions them with the ability to enter the world of the patient and his disease with personal and professional firmness. We defined a space for reflection on the meaning of suffering, its correlation in clinical practice, and a fundamental argument when proposing legislation linked to the end of life.

A complexidade de uma doença terminal evidencia a vulnerabilidade do ser humano diante da dor e do sofrimento, e acentua a crise subjetiva que acompanha não só o paciente, mas também o médico que o assiste. Analisamos a proposta de um estudo posicionado na ética do atendimento àqueles que necessitam de cuidados integrais no final da vida. Referimo-nos à pesquisa intitulada "Fim da vida, cuidados paliativos e empatia. Gestão da empatia como recurso fundamental na tomada de decisões no fim da vida". Um trecho deste trabalho aponta para a importância de os médicos serem capazes de situar o sofrimento do paciente separadamente de si mesmos, de modo a sustentar uma ressonância empática que os posicione com a capacidade de entrar no mundo do paciente e de sua doença, com firmeza pessoal e profissional. Definimos um espaço de reflexão sobre o significado do sofrimento, seu correlato na prática clinica e um argumento fundamental ao propor uma legislação ligada ao fim da vida.

Medicina familiar, principios bioéticos y final de la vida en Colombia / Family Medicine, Bioethical Principles and End of Life in Colombia

Introducción: La medicina familiar, dentro de su enfoque biopsicosocial, acoge la valoración integral de cada individuo en su curso de vida, donde es indispensable integrar todos los principios bioéticos para brindar una atención adecuada, oportuna y humanizada. El abordaje del especialista en medicina familiar sobre el final de vida debe estar ligado a estos aspectos, lo que permite ampliar la relación clínica desde el paciente hasta su núcleo familiar y su equipo en salud. Objetivo: Discutir los principios bioéticos desde una perspectiva integrativa a partir de un recorrido por los principales apartados legales que se han desarrollado en Colombia desde la sentencia C-239 de 1997, en relación con el derecho a morir dignamente. Métodos: Se realizó una revisión narrativa mediante la búsqueda en PubMed, Elsevier, Scielo y la normativa del contexto colombiano. Conclusiones: La disponibilidad de la información permite tener claridad sobre los conceptos al final de vida y el quehacer de los profesionales de la salud en esta etapa, que permita brindar al paciente y a su familia información clara y alternativas en su manejo integral, que dignifique la relación médico-paciente-familia-equipo de salud(AU)

Introduction: Family medicine, within its biopsychosocial approach, welcomes the comprehensive assessment of each individual in his or her life course, where it is essential to integrate all bioethical principles to provide adequate, timely and humanized care. The approach of the family medicine specialist at the end of life should be linked to these aspects, which allows extending the clinical relationship of the patient to the family nucleus and the health team. Objective: To discuss bioethical principles from an integrative perspective based on the review of the main legal paragraphs that have been developed in Colombia since the C-239 ruling of 1997 in relation to the right to die with dignity. Methods: A narrative review was carried out through searches in PubMed, Elsevier, SciELO and in the normativity of the Colombian context. Conclusions: The availability of information allows clarity about the concepts at the end of life and the work of health professionals at this stage, which allows providing the patient and family with clear information and alternatives in their comprehensive management, which dignifies the doctor-patient-family-health team relationship(AU)

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.

Factors Related to Care Management for Older Adults Requiring Home Care in the End-of-life Period and Implications for Training / 日本プライマリ・ケア連合学会誌

Introduction: To identify factors related to the quality-of-care management performance of older adults who required home care in the end-of-life period and implications for training.Methods: A total of 2,540 care management offices were randomly selected, and one care manager from each office completed a self-administered questionnaire. The End-of-life Care Management Scale was used to assess care management performance. Multiple regression analysis was performed after bivariate analysis using attributes and other factors.Results: The most important factors were previous training in disease, previous training in multidisciplinary collaboration, sex, previous training in nursing, had a visiting nurse agency, years of experience, and previous training in team building, in descending order.Conclusion: Quality-of-care management execution may be improved by focusing on and prioritizing training content where contributions are indicated and utilizing visiting nurses.

Burial or cremation? Factors associated with preferences among patients with cancer in Brazil: a cross-sectional study

ABSTRACT BACKGROUND: People living with life-limiting illnesses and their family caregivers consistently emphasize the importance of preparing for imminent death, with planned funerals being a common aspect of this preparation. Few studies have described the funeral rituals or post-mortem preferences of patients with cancer. OBJECTIVE: To evaluate the percentage of patients with cancer who wish to be cremated and to identify the factors associated with this preference. DESIGN AND SETTING: Cross-sectional study conducted at Barretos Cancer Hospital. METHODS: A total of 220 patients with cancer completed a Sociodemographic and Clinical Questionnaire, the Duke University Religiosity Index, and burial or cremation preferences. Binary Logistic Regression was performed to identify independent variables associated with cremation. RESULTS: Of the 220 patients, 25.0% preferred cremation and 71.4% preferred burial. Talks about death with family or close friends in their daily life (odds ratio, OR = 2.89; P = 0.021), patients that answered "other" (unsure, tends not be true and not true) for religious beliefs are what really lie behind my whole approach to life (OR = 20.34; P = 0.005), and education 9 to 11 years (OR = 3.15; P = 0.019) or ≥ 12 years (OR = 3.18; P = 0.024) were associated with cremation preference. CONCLUSION: Most patients with Cancer in Brazil prefer burial after death. Discussions about death, religious beliefs and involvement, and educational level seem to influence the preference for cremation. A deeper understanding of ritual funeral preferences and their associated factors may guide policies, services, and health teams in promoting the quality of dying and death.

Assistance practices of medical and nursing teams for hospitalized people in palliative care / Prácticas asistenciales de equipos médicos y de enfermería para personas en cuidados paliativos internadas / Práticas assistenciais de equipes médicas e de enfermagem às pessoas em cuidados paliativos hospitalizadas

ABSTRACT Objective: to analyze the practices of Medical and Nursing teams for hospitalized people in Palliative Care. Method: a qualitative research study linked to the post-critical perspective, carried out between November 2020 and April 2021 in a teaching hospital from southern Brazil. The participants were three physicians, four nurses, three nursing technicians and four hospitalized adults monitored by a Palliative Care consulting team. Vignette and data extraction from medical records were used as data production techniques. The Atlas.ti program, cloud version for students, was used for data management. The data were submitted to content thematic content analysis and interpreted with theoretical notions of life technologies, therapeutic economics and biopolitics. Results: the practices were directed towards physical distress. The technologies, represented by devices and medications, were the main ways of approaching this. Even if controversial, some practices tend to be used with a view to prolonging the days of life, if that should be the family's wish. The family tends to be used as a link between the hospital and the home; however, it needs to be cared for. Conclusion: the practices of Medical and Nursing teams partially converge with Palliative Care recommendations and principles. Even under the monitoring of a specialized team, the behaviors prescribed by care teams are supported, above all, on moral values and empirical judgment. Such stance has repercussions on the resistance to accepting death as an existential event and inherent to life, keeping it still medicalized, even from different perspectives, such as Palliative Care.

RESUMEN Objetivo: analizar las prácticas de equipos médicos y de Enfermería para personas en Cuidados Paliativos internadas. Método: investigación cualitativa vinculada a la perspectiva post-crítica, realizada entre noviembre de 2020 y abril de 2021 en un hospital escuela del sur de Brasil. Los participantes fueron tres médicos, cuatro enfermeros, tres técnicos de Enfermería y cuatro adultos internados bajo seguimiento del equipo de asesoramiento en Cuidados Paliativos. Se utilizaron viñetas y extracción de datos de historias clínicas como técnicas de producción de datos. Se utilizó el programa Atlas.ti, versión cloud para estudiantes, para administrar los datos, que fueron sometidos a análisis temático de contenido e interpretados con nociones teóricas de tecnologías de vida, economía terapéutica y biopolítica. Resultados: las prácticas estuvieron dirigidas al sufrimiento físico. Las tecnologías, representadas por dispositivos y medicamentos, fueron las principales formas de abordaje para ellos. Aunque controversiales, algunas prácticas tienden a ser utilizadas con vistas a prolongar los días de vida, si ese fuese el deseo de la familia. La familia tiende a ser utilizada como enlace entre el hospital y el domicilio, aunque debe ser atendida. Conclusión: las prácticas de equipos médicos y de Enfermería convergen parcialmente con recomendaciones y principios de los Cuidados Paliativos. Incluso bajo la supervisión de un equipo especializado, las conductas prescritas por equipos asistenciales se apoyan especialmente en valores morales y decisiones empíricas. Tal postura repercute en la resistencia a aceptar la muerte como un evento existencial e inherente a la vida, manteniéndola medicalizada incluso desde perspectivas diferenciadas, como los Cuidados Paliativos.

RESUMO Objetivo: analisar as práticas de equipes médicas e de enfermagem às pessoas em cuidados paliativos hospitalizadas. Método: pesquisa qualitativa, vinculada à perspectiva pós-crítica, realizada entre novembro de 2020 e abril de 2021 em um hospital de ensino do sul do Brasil. Os participantes foram três médicos, quatro enfermeiros, três técnicos de enfermagem e quatro adultos hospitalizados acompanhados por equipe de consultoria em cuidados paliativos. Como técnica de produção dos dados foram utilizadas vinheta e extração de dados de prontuários. O programa Atlas.ti, versão Cloud para estudantes, foi utilizado para o gerenciamento dos dados, submetidos à análise de conteúdo, do tipo temática, e interpretados com noções teóricas de tecnologias de vida, economia terapêutica e biopolítica. Resultados: as práticas estiveram direcionadas ao sofrimento físico. As tecnologias, representadas por equipamentos e medicamentos foram as principais formas de abordagem para tal. Algumas práticas, mesmo que controversas, tendem a ser utilizadas com vistas a prolongar os dias de vida, se esse for um desejo da família. A família tende a ser utilizada como um elo entre o hospital e o domicílio, porém, carece de ser cuidada. Conclusão: as práticas de equipes médicas e de enfermagem convergem, em parte, com recomendações e princípios dos cuidados paliativos. Mesmo sob o acompanhamento de equipe especializada, as condutas prescritas por equipes assistenciais são respaldadas, sobretudo, em valores morais e julgamento empírico. Tal postura repercute na resistência da aceitação da morte como um evento existencial, inerente à vida, mantendo-o ainda medicalizado, mesmo sob perspectivas diferenciadas, como os cuidados paliativos.

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.

Perfil de usuários com necessidades de cuidados paliativos vinculados a uma Unidade Básica de Saúde no município de Porto Alegre/RS / User profiles with palliative care needs linked to a primary healthcare center in the city of Porto Alegre, RS

O fortalecimento em Cuidados Paliativos (CP) na Atenção Primária à Saúde (APS) aumenta a qualidade do atendimento no fim de vida e possibilita redução de complicações por longas internações. O objetivo deste trabalho foi analisar dados sobre a mortalidade ocorrida em portadores de doenças crônicas avançadas não transmissíveis vinculados à Unidade Básica de Saúde Vila Floresta do Grupo Hospitalar Conceição (USVF-GHC) e verificar quantos destes seriam elegíveis aos CP. Trata-se de uma pesquisa de caráter transversal, descritiva e de abordagem quantitativa e retrospectiva. Os dados são provenientes de registros eletrônicos em saúde, do relatório de monitoramento gerencial, dos prontuários na USVF-GHC e da vigilância epidemiológica de Porto Alegre. Utilizou-se a escala Palliative Care Screening Tool (PCST) para critério de elegibilidade à CP. De um total de 155 pessoas que faleceram e moravam no território de atuação da USVF-GHC no ano de 2019, 55,2%(n=86) eram do sexo feminino, 54,2%(n=84) eram idosos com mais de 80 anos, 23,9%(n=37) tinham o tempo entre diagnóstico e óbito com mais de 5 anos, em 69,7%(n=108) dos casos o local de falecimento foi o hospital, 66,5%(n=103) não tinham prontuário, para 34,8%(n=54) foram as neoplasias as principais causas de óbito e 42,6%(n=66) foram considerados elegíveis aos CP segundo a PCST. Conclui-se que o perfil de pessoas com diagnóstico há mais de cinco anos da doença que resultou no óbito poderia ser observado com maior atenção pelas equipes da APS no que diz respeito aos CP, aumentando as buscas ativas e estabelecendo comunicação efetiva com os hospitais na transferência de cuidados.

Strengthening in Palliative Care (PC) in Primary Healthcare (PHC) increases the quality of care at the end of life and reduces complications from long hospitalizations. The objective of this work was to analyze data on mortality that occurred in patients with advanced chronic non-communicable diseases associated with the Vila Floresta Primary Healthcare Center of the Conceição Hospital Group (VFPHC-CHG) and to verify how many of these would be eligible to PC. It is a transverse, descriptive and quantitative and retrospective approach research. Data come from electronic health records, management monitoring report, VFPHC-CHG medical records and Porto Alegre Epidemiological Surveillance. The Palliative Care Screening Tool (PCST) scale for PC eligibility criterion. Out of a total of 155 people who died and lived in the VFPHC-CHG covered territory in 2019, 55.2% (n = 86) were female, 54.2% (n = 84) were elderly and more 80 years old, 23.9% (n = 37) had died within five years after diagnosis, in 69.7% (n = 108) of cases the place of death was the hospital, 66.5% (n = 103) had no medical record, were neoplasms the main causes of death in 34.8%(n = 54), and 42.6% (n = 66) were considered eligible for PC according to PCST. It is concluded that the profile of people with diagnosis for over five years of the disease that resulted in death could be observed more carefully by PHC teams regarding PC, increasing the search for those who are eligible and establishing effective communication with hospitals in care transfer.

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.

Documentation patterns on communicating prognosis to patients with terminal illness

Introduction@#Prognosis is an issue which most doctors and patients find difficult to discuss. Both patients and physicians find this process distressing as they can be unprepared to receive and give life-altering news. Although clinicians report that they are discussing prognosis, patients and caregivers frequently do not corroborate these reports, creating communication gaps especially in end-of-life situations.@*Objective@#This study determined how attending physicians documented the communication of prognosis on the patients’ records in terms of content, timing, and frequency during the course of hospitalization.@*Methods@#This is a retrospective chart review of 234 terminally-ill patients admitted from January 2020 to March 2020 in five (5) clinical departments of a public tertiary hospital. Discharge summaries and physicians’ daily chart notes were reviewed to identify the major events of each case.@*Results@#Two-thirds of the patients’ records had no documentation of any discussion with patient/family/significant others relating to patients’ worsening condition. The quantitative and qualitative forms of contextual information regarding patient prognosis were infrequently recorded. Notes on conversations of survival rate, probability of treatment response and failure were likewise lacking. However, for the occasional documentation observed, the timing of the communications was appropriate across the disease trajectory and was significantly correlated with all major points of illness deterioration (p<.001). Physician and patient characteristics had no association with the practice of documenting communication prognosis@*Conclusion@#Communication prognosis is not a common practice for most physicians. Prognosis was poorly documented on the patients’ charts, which could suggest that either such a communication process did not take place at all or physician education on documentation should be reinforced by an institutional protocol, especially in the care of terminally ill patients.