High-flow Nasal Cannula Oxygen Therapy in a Palliative Care Unit: Three Cases of Cancer Patients Suffering from Severe Dyspnea with Respiratory Failure

High-flow nasal cannula oxygen therapy (HFNC) in palliative care is mentioned in several guidelines, however, the indication for this procedure has not been established yet. At our department, HFNC has increasingly been adopted for end-stage cancer patients when their dyspnea needs to be alleviated. This is a case report on three patients treated with this procedure at our department. Although they had severe dyspnea with respiratory failure, their daily activities, such as enjoying meals and conversation with their families, were improved with HFNC. It can be a treatment of choice to maintain and improve patients’ quality of life (QOL) in palliative setting, where benefits and risks should be considered for each patient.

Awareness of Do Not Resuscitate (DNR) Order among Medical Students in Universiti Sains Malaysia

@#Introduction: Do Not Resuscitate (DNR) order is a type of Advance Medical Directive (AMD) that documents a patient’s wishes or desire to refrain from Cardiopulmonary Resuscitation (CPR), especially in the terminally ill patient. It is a sensitive issue in patient care and less is known on medical students awareness on the area. Aim: This study assessed the opinion, knowledge, awareness and familiarity toward Do Not Resuscitate (DNR) order among undergraduate medical students from year 1 to 5 in Universiti Sains Malaysia. Methods: A cross-sectional study was conducted with 250 undergraduate medical students using an online questionnaire on awareness towards DNR orders. Descriptive statistics, independent t-test and one-way ANOVA were applied to examine the distribution and association of DNR awareness among medical students with year of study, gender, race and religion. Results: The study indicated that most participants (84.4%) were familiar with DNR orders. There was no significant association between all 4 variables (year of study, gender, race and religion) with level of awareness among undergraduate medical students in HUSM. Conclusion: Undergraduate medical students have a good awareness on DNR orders. Despite having a multiracial and multi religion community, the medical students have similar patterns in their knowledge about DNR.

Garantizar el derecho a una muerte segura y culturalmente adecuada: el sentido de las ocupaciones en la tríada vida-muerte-renacimiento desde la visión indígena Colombiana / Garantindo o direito a uma morte segura e culturalmente apropriada: o significado das ocupações na tríade vida-morte-renascimento a partir da visão indígena colombiana / Guaranteeing the right to a safe and culturally appropriate death: the meaning of occupations in the life-death-rebirth triad from the Colombian indigenous perspective

Resumen El valor espiritual atribuido a la muerte, para los guardianes del corazón del mundo en la Sierra Nevada de Santa Marta, Colombia, como en otras culturas indígenas, integra una preparación social, física, ética, ecológica y emocional para hacer un acompañamiento saludable a la vida después de la muerte. Su importancia va mucho más allá de una visión relacionada con hechos espectaculares o la desmitificación de su cosmovisión como "pobre o vulnerable". A través de una reflexión situada de los procesos de salud, enfermedad y cuidado en el contexto indígena del final de la vida, proponemos considerar el sentido de las ocupaciones en la tríada vida - muerte - renacimiento, para garantizar el derecho a una muerte segura y culturalmente adecuada. La dimensión ocupacional, como agente de construcción e interpretación de los significados colectivos de las comunidades indígenas a través de la espiritugogía precedida por su ancestralidad, puede ofrecer otras perspectivas interculturales de cuidados paliativos milenarios y un seguimiento diferenciado y respetuoso por parte de los sistemas de salud.

Resumo O valor espiritual atribuído à morte, pelos guardiões do coração do mundo na Serra Nevada de Santa Marta, Colômbia, como em outras culturas indígenas, integra uma preparação social, física, ética, ecológica e emocional para fazer um acompanhamento saudável para a vida após a morte. Sua importância vai muito além de uma visão relacionada a eventos espetaculares ou a desmistificação de sua visão de mundo como "pobres ou vulneráveis". Por meio de uma reflexão situada dos processos de saúde, doença e cuidado no contexto indígena do final da vida, propomos considerar o significado das ocupações na tríade vida - morte - renascimento, para garantir o direito a uma morte segura e culturalmente apropriada. A dimensão ocupacional, como agente de criação e interpretação dos significados coletivos das comunidades indígenas por meio da espiritugogía precedida por sua ancestralidade, pode oferecer outras perspectivas interculturais de cuidados paliativos milenares e um acompanhamento diferenciado e respeitoso pelos sistemas de saúde.

Abstract The spiritual value attributed to death, by the guardians of the heart of the world in Sierra Nevada de Santa Marta, Colombia, as in other indigenous cultures, integrates a social, physical, ethical, ecological, and emotional preparation to make a healthy accompaniment to life after death. Its importance goes far beyond a vision related to spectacular events or the demystification of the indigenous worldview as being considered "poor or vulnerable". Through a situated reflection of the health, illness and care processes within an indigenous context at the end of life, we propose to consider the meaning of occupations in the triad of life - death - rebirth, to ensure a compliance with the right of one that alludes to the meaning of a safe and culturally appropriate death. The occupational dimension, as an agent for creating and interpreting the collective meanings of indigenous communities through the espiritugogía preceded by their ancestry, can offer other intercultural perspectives of ancient palliative care and differentiated and respectful support by health systems.

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.

Dimensão ética da alimentação e hidratação artificiais no doente terminal / Ethics, artificial nutrition, and hydration in terminal patients / Dimensión ética de la nutrición e hidratación artificial en los pacientes terminales

Resumo Dada a insuficiente evidência científica, decisões relativas à utilização de nutrição e hidratação artificiais em pacientes terminais configuram um importante dilema ético. Identifica-se um conflito entre as perspetivas de "tratar" e "cuidar", com variação quanto a sua utilização conforme o contexto legal e cultural de diferentes países. O intuito deste estudo é esclarecer se essa prática constitui uma medida de cuidado básico ou um tratamento fútil e desproporcionado. Procede-se a uma revisão das diretrizes e dos códigos deontológicos de diferentes países europeus. Em Portugal, na Itália e na Polônia, tal prática é vista como uma medida de cuidado básico; já em países como França, Inglaterra, Noruega, Irlanda, Alemanha, Finlândia, Holanda, Bélgica e Suíça, é considerada um tratamento fútil. Na Romênia, na Croácia e na Hungria, verifica-se um enquadramento ético e legal insuficiente. As diferenças de abordagem a doentes terminais podem ser reflexo das diferentes perspetivas culturais.

Abstract Given the lack of scientific evidence, decisions regarding the administration of artificial nutrition and hydration in terminally ill patients constitute an important ethical dilemma due to the conflict between "treat" and "care" perspectives and the varying usage depending on the legal and cultural background across countries. This study aims to explain whether this practice configures a basic care intervention or a futile medical treatment. Therefore, we review the national guidelines and codes of ethics from several European countries. Countries such as Portugal, Italy, and Poland view it as a basic care intervention, whereas France, England, Norway, Ireland, Germany, Finland, Netherlands, Belgium, and Switzerland, as a medical treatment. Moreover, countries such as Romania, Croatia, and Hungary lack such legal framework. The different approaches regarding the care of terminally ill patients can reflect differences on cultural perspectives.

Resumen Dada la insuficiente evidencia científica, las decisiones sobre el uso de la nutrición e hidratación artificiales en los pacientes terminales constituyen un importante dilema ético. Se identifica un conflicto entre las perspectivas de "tratar" y "cuidar", con variaciones en su uso según el contexto legal y cultural de los diferentes países. El objetivo de este estudio es dilucidar si esta práctica constituye una medida de atención básica o un tratamiento fútil y desproporcionado. Se realiza una revisión de las directrices y códigos deontológicos de diferentes países europeos. En Portugal, Italia y Polonia, se considera esta práctica como una medida de atención básica; mientras que en países como Francia, Inglaterra, Noruega, Irlanda, Alemania, Finlandia, Holanda, Bélgica y Suiza, se considera un tratamiento fútil. En Rumanía, Croacia y Hungría, el marco ético y jurídico es insuficiente. Las diferencias en el tratamiento de los pacientes terminales pueden reflejar diferentes perspectivas culturales.

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.

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.

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)

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)

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.

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.

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.

Palliative Care for End-Stage Renal Disease:A Case Report and Literature Review / 中国医学科学院学报

Since end-stage renal disease leads to a variety of problems such as disability,reduced quality of life,and mental and psychological disorders,it has become a serious public health problem around the globe.Renal palliative care integrates palliative care philosophy in the care for patients with end-stage renal disease.As a planned,comprehensive,patient-centered care,renal palliative care focuses on the patient's symptoms and needs,aiming to reduce the suffering throughout the course of the disease,including but not limited to end-of-life care.This study reports the palliative care practice for a patient on maintenance dialysis in the Blood Purification Center of Peking Union Medical College Hospital and reviews the present situation of palliative care in end-stage renal disease.

Behavioral Intention Scale for End-of-life DiscussionsReliability and Validity Using a Web-based Survey

Purpose: The purpose of this study was to examine the reliability and validity of the behavioral intention scale for end-of-life discussions. Methods: The scale items were developed according to the Theory of Planned Behavior. The drafts of the scale were created by Item-Level Content Validity Index (I-CVI) and a preliminary test. In the main study, we administered a cross-sectional questionnaire on the web to the participants 20–79 years of age (n=860), living in Tokyo and six surrounding prefectures, and a retest one week later (n=665). We examined item analysis, calculation of a reliability coefficient (intraclass correlation coefficient, Cronbach's alpha coefficient), construct validity, and concurrent validity of the scale. Results: Six factors identified by an exploratory factor analysis were; outcome evaluation, perceived power, control beliefs, motivation to comply, normative beliefs, and behavioral beliefs. The alpha coefficient of the overall scale was .96. The effect size that was determined based on known-groups validity and the correlation coefficient determined on the basis of concurrent validity were moderate. Conclusions: The reliability and validity of the scale were generally confirmed.

Recognition of Possibility of End-of-Life Care at Home and Analysis of Related Factors among Middle-aged and Elderly People in Special Heavy Snowfall Areas and Depopulated Mountain Villages / 日本プライマリ・ケア連合学会誌

Introduction: The purpose of this study was to clarify factors related to recognition of the possibility of end-of-life care at home (hereafter referred to as end-of-life care) among middle-aged and elderly people living in heavy snowfall and depopulated areas.Methods: Residents aged 40~69 years in town B, prefecture A were surveyed by mail using a self-administered, unmarked questionnaire. Analysis methods were: (1) a reliability analysis of survey items, (2) basic statistics, (3) tests for differences in composition ratios, (4) tests of differences between the two groups for each item, and (5) binomial logistic regression analysis. Recognition of the possibility of end-of-life care was used as the objective variable, and sex, age, and 18 indicators significant in (3) and (4) were used as explanatory variables.Results: There were 63 in the positive group for end-of-life care, 239 in the negative group, and 120 in the unknown group (Response rate: 44.1%). Factors related to perception of the possibility of end-of-life care were positively related to "existence of a community hospital, " "positive image of end-of-life care, " and "trust in people in the community. "Conclusion: In depopulated areas, it is necessary to consider specific measures to promote the three factors that raise awareness of the possibility of end-of-life care.