Analyzing innovative policies and practices for palliative care in Portugal: a qualitative study.

BACKGROUND: Countries with formal policies for palliative care, and advanced and integrated practices in this field, such as Portugal, face challenges in achieving excellence in care, particularly in home-based assistance. Issues include care coordination among providers, confusion regarding the roles of each health care professional in the network, and a lack of monitoring and evaluation of actions. Our objective was to analyze the implementation of palliative care in primary health care in Portugal. METHODS: We conducted a qualitative, descriptive, and exploratory study in Portugal involving health care professionals with experience in palliative care. The data were collected through semistructured interviews and focus groups between March and October 2023. Eighteen health care professionals participated. We used the Alceste software for lexicographic analysis. The research was authorized by an Ethics Committee. RESULTS: Four classes were identified; classes 1 and 2, comprising 77% of the corpus, addressed the study objectives. Participants highlighted inequitable access, strategic development plans with unattainable short-term goals; and low literacy. They emphasized the importance of legislation, professional training initiatives for generalist palliative care at home, and early referral. Home-based challenges included professionals' lack of exclusive dedication, absence of 24/7 coverage, and unavailability of capable family caregivers. The networks' response to hospital admissions and patient transitions from hospital to home, with access to the specialized team, was also inadequate. CONCLUSIONS: Health care professionals aim to increase patients' time spent at home, reduce emergency department visits, and minimize hospitalizations by leveraging the resources of the national palliative care network. In addition to investments to sustain network implementation and legally guaranteed palliative care rights, the country must focus on measurable indicators for evaluating and monitoring actions, providing better guidance in the short, medium, and long term.

Knowledge and attitudes of physicians in Chile toward Do-Not-Attempt-Resuscitation orders: A cross-sectional nation-wide study.

Objective: Do-Not-Attempt-Resuscitation orders originated in the early 1960s with the establishment of advanced cardiopulmonary resuscitation. These orders aim to limit therapeutic efforts in cases where it may be futile. The decision not to resuscitate a patient is a process that involves a series of ethical, legal, and clinical considerations. Still, it also requires a process in which priority is given to the patients and their autonomy. The objective of this study was to describe the knowledge and attitudes of physicians working in Chile toward Do-Not-Attempt-Resuscitation orders. Methods: A cross-sectional study was conducted, in which a digital questionnaire was sent to physicians from different regions of Chile. Quantitative variables were analyzed using measures of central tendency and dispersion (e.g., median and interquartile range), while qualitative variables were evaluated using frequencies and percentages. Results: Four hundred and thirty-one physicians completed the survey. 85.4% were familiar with the ethical and legal guidelines for cardiopulmonary resuscitation and the rights and duties of the patient. 39.2% believed that patients should have the final decision Do-Not-Attempt-Resuscitation orders, especially if they themselves requested not to be resuscitated. 87.7% mentioned that the Do-Not-Attempt-Resuscitation orders should be reassessed if the patient's prognosis improves. In addition, it was found that the decision not to resuscitate was not always discussed with the patient or their family. Conclusions: The study revealed an ethical conflict regarding Do-Not-Attempt-Resuscitation orders and their management by Chilean physicians. Therefore, it is necessary to create recommendations and provide training to guide professionals in this process, which should also involve patients and their families.

Cuidados paliativos en la atención primaria de salud / Palliative care in primary health care

En la actualidad, la oferta de cuidados paliativos especializados ha sido superada por la demanda, por lo cual la atención a pacientes con enfermedades en estado terminal o en fase final de la vida suele estar a cargo del médico del nivel primario de asistencia. En ese sentido, los cuidados paliativos primarios incluyen el diagnóstico, el tratamiento paliativo, la planificación anticipada, la gestión y coordinación de intervenciones multidisciplinarias y la transferencia a cuidados especializados cuando sea necesario y haya disponibilidad para ello. Al respecto, en este artículo se exponen brevemente algunos elementos sobre el tema y se propone, además, un algoritmo práctico y fácil de aplicar en la atención primaria, que permitirá identificar a la población aquejada por dolencias en esas etapas, con diferenciación en cuanto a afecciones neoplásicas o no neoplásicas.

Nowadays, the offer of specialized palliative care has been overcome by the demand, reason why care to patients with terminal illness or in end-of-life period is usually in charge of the doctor from primary care level. In that sense, primary palliative care includes the diagnosis, palliative treatment, early planning, administration and coordination of multidisciplinary interventions and referring to specialized care when it is necessary and the service is available. In this respect, some elements on the topic are shortly exposed in this work and, also, a practical and easy implementation algorithm in primary care is proposed that will allow identifying population suffering from pain in those stages, with differentiation as for neoplastic or non neoplastic affections.

The Physician Surprise Question in the Emergency Department: prospective cohort study.

OBJECTIVES: This study aims to test the ability of the surprise question (SQ), when asked to emergency physicians (EPs), to predict in-hospital mortality among adults admitted to an emergency room (ER). METHODS: This prospective cohort study at an academic medical centre included consecutive patients 18 years or older who received care in the ER and were subsequently admitted to the hospital from 20 April 2018 to 20 October 2018. EPs were required to answer the SQ for all patients who were being admitted to hospital. The primary outcome was in-hospital mortality. RESULTS: The cohort included 725 adults (mean (SD) age, 60 (17) years, 51% men) from 58 128 emergency department (ED) visits. The mortality rates were 20.6% for 30-day all-cause in-hospital mortality and 23.6% for in-hospital mortality. The diagnostic test characteristics of the SQ have a sensitivity of 53.7% and specificity of 87.1%, and a relative risk of 4.02 (95% CI 3.15 to 5.13), p<0.01). The positive and negative predictive values were 57% and 86%, respectively; the positive likelihood ratio was 4.1 and negative likelihood ratio was 0.53; and the accuracy was 79.2%. CONCLUSIONS: We found that asking the SQ to EPs may be a useful tool to identify patients in the ED with a high risk of in-hospital mortality.

The expectations of metastatic cancer patients regarding palliative chemotherapy: A Brazilian-German qualitative study.

OBJECTIVE: To explore the expectations of Brazilian and German patients regarding metastatic cancer and palliative chemotherapy. METHODS: Interviews with 48 metastatic cancer patients from Brazil and Germany were conducted. The interviews were transcribed and analyzed using the thematic analysis approach to identify common themes. The sociodemographic data were collected using an instrument developed by the authors. RESULTS: A total of 48 patients participated in the study (58% were Brazilian and 42% were German). Of all participants, 35% were men and 65% were women. The participants' mean age was 41 years. The general idea captured from the interviewees' speech was that their diseases were curable or "while there is chemotherapy, there is life"; thus, the data analysis enabled the elaboration of the central theme, entitled "Mistaken expectations of metastatic cancer patients regarding palliative chemotherapy: While there is chemotherapy, there is life," with 5 subthemes, namely: (1) communication and expectations; (2) normal life; (3) the person behind the disease; (4) religiosity and spirituality; and (5) the fortitude to choose between continuing or discontinuing treatment. SIGNIFICANCE OF RESULTS: Regardless of cultural aspects, patients with metastatic cancer on palliative chemotherapy tend to believe in the healing potential of treatments. Dividing expectations only into curable or incurable is insufficient, as even patients who have acknowledged the incurability of their disease expect to live, as long as they remain under treatment as if the disease did not exist.

Morte digna como direito: visibilidade jurídica da finitude / Dignified death as a right: the legal visibility of finitude / La muerte digna como derecho: visibilidad jurídica de la finitud

Resumo O direito à morte digna é majoritariamente ignorado pelo ordenamento brasileiro. Essa invisibilidade do processo de finitude e suas consequências são tema deste estudo, que objetiva realizar um levantamento exploratório para identificar pontos relevantes que devem ser desenvolvidos para garantir um processo de finitude digno. Foram analisadas 50 publicações, mediante levantamento online e físico de obras publicadas até março de 2023. Os estudos analisados expressam preocupação com dilemas éticos do cuidar do ser humano em finitude, mas não analisam formas existentes de tutela da finitude nem quais searas ainda são carentes de normatização para dar eficácia a esse cuidado. Espera-se que esta pesquisa contribua para fortalecer o olhar crítico ao tema, considerando as atuais tutelas da finitude, os limites legais do Estado e os potenciais passos futuros para fazer avançar os estudos aplicados à atualização prática do ordenamento brasileiro.

Abstract The right to a dignified death is largely overlooked by Brazilian law. This neglect of the end-of-life process and its ramifications is the focus of this study, which aims at an exploratory survey to identify pertinent aspects requiring development to ensure a dignified end-of-life experience. In total, 50 publications were examined with online and physical surveys of works published up to March 2023. They express concerns regarding ethical dilemmas in caring for individuals nearing the end of life, yet they do not delve into existing mechanisms for safeguarding end-of-life dignity or identify areas that still lack standardization to ensure effective care. This study should contribute to the enhancement of critical perspectives on the issue of end-of-life experiences, considering current safeguards, the legal boundaries set by the State, and potential future strides toward advancing studies aimed at the practical update of the Brazilian legal system.

Resumen El derecho a una muerte digna es ampliamente ignorado por el ordenamiento jurídico brasileño. Esta invisibilidad del proceso de finitud y sus consecuencias son el objeto de este estudio, que tiene como objetivo realizar una encuesta exploratoria para identificar los puntos relevantes que deben desarrollarse para garantizar un proceso de finitud digno. Se analizaron 50 publicaciones a través de una encuesta online y física de obras publicadas hasta marzo de 2023. Los estudios analizados expresan preocupación por los dilemas éticos de la atención a seres humanos en finitud, pero no analizan las formas de protección a la finitud existentes ni cuáles son las áreas que aún necesitan regulación para hacer efectiva esta atención. Se espera que esta investigación contribuya a fortalecer la visión crítica de la finitud, considerando la protección actual de la finitud, los límites jurídicos del Estado y los posibles pasos futuros para avanzar en los estudios aplicados a la actualización práctica del sistema jurídico brasileño.

Nutritional support in palliative cancer care: quality of life in oral versus tube feeding.

BACKGROUND: Nutritional support (NS) offered through oral nutritional supplements (ONS) or enteral nutrition (EN) and its impact on quality of life (QoL) is a controversial topic in patients with cancer receiving palliative care (PC). AIMS: To compare the QoL of patients without and with use of NS, including ONS or EN in patients with incurable cancer receiving PC. METHODS: Cross-sectional analysis with patients that were evaluated at PC Unit between June 2021 and February 2023. QoL was assessed using the Quality of Life Questionnaire Core 15. Patients were classified into three groups according to the NS: ONS (n=72; 33%), EN (n=61; 28%) and control group (CG) (n=87; 39%), the last one being formed by patients not using NS. Adjusted logistic regression models were used to verify the association of the domains of QoL with the type of NS. RESULTS: A total of 220 patients were included, with a median age of 64 (58-70) years, predominantly male (54.1%). The EN group had worse scores in physical function when compared with the ONS group (p=0.037) and appetite loss when compared with the CG (p=0.013). The ONS (OR: 2.70; 95% CI 1.32 to 5.49) and EN groups (OR: 2.61; 95% CI 1.24 to 5.49) were independently associated with a higher chance of presenting appetite loss in relation to the CG. CONCLUSION: In general, there was no difference in the QoL of patients using NS when compared with patients not using NS. However, patients using NS have more chance of having appetite loss.

Advanced breast, cervical and prostate cancer- Patient needs: systematic review.

BACKGROUND: There are high rates registered globally of breast cancer, cervical and prostate. People going through have needs that cause an impact in their life's quality, especially in the final stages of the illness. GOAL: To characterise the most evaluated and afflicted physical, emotional, roll, cognitive, social and spiritual needs of patients in the final stages of breast, cervical and prostate cancer. INTERVENTIONS/METHODS: A thorough systematic search of databases such as Medline (Ovid) and Embase, from databases' creation throughout 31 December 2021. Quantitative studies were included to evaluate, from the adoption of tools, the dimensions or needs of people going under three types of cancer on final stages. RESULTS: Twelve studies were included. More common symptoms such as nausea/vomiting and pain were the most evaluated with 83%. Fifty-eight per cent of papers studied the emotional function of people with breast and prostate cancer. Other 42% included roll, cognitive and social appreciations. Sexual, cognitive and physical, in that line, were the most affected. The most common questionnaires used to measure oncological patients on final stages were those from European Organisation for Research and Treatment of Cancer on its C-30, BR-23, C-15 PAL and CR-25 versions. CONCLUSIONS: On breast and prostate cancer, the most affected aspect was the sexual dysfunction, while for cervical cancer, the physical function was the most altered one. Spiritual dimension was not included in any of the evaluated literature.

Midodrine in end-stage heart failure.

It is estimated that 5% of patients with heart failure (HF) will progress to end-stage disease refractory to medical therapy and might require prolonged hospitalisation with inotropic support. We present the case of a patient with end-stage HF who was admitted with cardiogenic shock. During his hospitalisation, he required prolonged intravenous vasopressor therapy due to refractory hypotension. He did not qualify for heart transplantation or left ventricular-assist device strategies. Midodrine was started as a last resort attempt to wean off vasopressors. After 5 days of therapy, the patient was weaned entirely off vasopressors and was discharged home for hospice care. By the time of discharge, he was tolerating low-dose carvedilol along with midodrine. We propose midodrine as a reasonable alternative for patients with end-stage HF with reduced ejection fraction and refractory hypotension, who are dependent on intravenous vasoactive drugs and are not candidates for advanced HF therapies.

Palliative Sedation at Home: A Scoping Review.

Palliative Sedation (PS) is an effective measure for the relief of refractory symptoms in end-of-life patients. This intervention can be performed at home, respecting the patients' and their families' decisions. A scoping review was performed to map the available evidence in the literature on the performance of PS at home. This review included 23 studies. Most were conducted in European countries with adult cancer patients. Patients, family members and healthcare providers participated in the decision making regarding the use of PS at home. PS was used primarily to manage refractory symptoms (pain, delirium, dyspnea, and others), and in 1 of the studies PS was mentioned as a possible intervention for shortening life. The most commonly used medication was midazolam and the average duration ranged from 4 h to 7 days. There are few reports on adverse events related to PS. This intervention seems to be a feasible possibility for the management of refractory symptoms in patients at the end of life, despite the fact that it can represent specific challenges for healthcare providers, patients and families. However, the literature is limited regarding PS in children and in people with diseases other than cancer, as well as on the evaluation of possible adverse effects related to this intervention. Furthermore, it is essential to have a broad ethical, clinical and legal debate on whether to consider the use of PS for the purpose of shortening life in specific cases.

Espiritualidade e dor em pacientes com câncer de mama metastático / Spirituality and pain in patients with metastatic breast cancer / Espiritualidad y dolor en pacientes con cáncer de mama metastásico

Resumo Mediante estudo observacional, transversal e quantitativo que utilizou os instrumentos de avaliação Brief Pain Inventory (dor), Functional Assessment of Chronic Illness Therapy Spiritual Well-Being (bem-estar espiritual) e Beck Depression Inventory - Short Form (depressão), busca-se avaliar a influência da espiritualidade e da depressão na percepção de dor de pacientes acometidas por neoplasia de mama metastática. A idade média foi 57,3 anos e, das 30 participantes, 24 (80%) tratavam-se em serviço público; 17 (57%) tinham diagnóstico de câncer de mama há mais de cinco anos; e 27 (90%) realizavam alguma prática religiosa/espiritual. Pacientes com escore de bem-estar espiritual acima da mediana apresentaram menor escore dos sintomas depressivos (3 vs . 6; p =0,021). Não houve diferença significativa em relação à mediana do escore total do bem-estar espiritual quando estratificado pela mediana da percepção de dor (31,5% vs . 28,5%; p =0,405). Maior manifestação de bem-estar espiritual pode estar relacionada a menores índices de depressão.

Abstract This observational, cross-sectional and quantitative study, by means of the assessment instruments Brief Pain Inventory, Functional Assessment of Chronic Illness Therapy Spiritual Well-Being and Beck Depression Inventory - Short Form, evaluated the influence of spirituality and depression in the pain perception of patients with metastatic breast cancer. Mean age was 57.3 years. Of the 30 participants, 24 (80%) were treated in a public service, 17 (57%) had been diagnosed with breast cancer for more than 5 years, and 27 (90%) were religious or spiritual. Patients with spiritual well-being scores above the median had lower depressive symptom scores (3 vs. 6; p =0.021). The median total score of spiritual well-being showed no significant difference when stratified by median pain perception (31.5% vs. 28.5%; p =0.405). Greater spiritual well-being may be related to lower rates of depression.

Resumen Este estudio observacional, transversal y cuantitativo utilizó los instrumentos Brief Pain Inventory (dolor), Functional Assessment of Chronic Illness Therapy Spiritual Well-Being (bienestar espiritual) y Beck Depression Inventory - Short Form (depresión), para evaluar si la espiritualidad y la depresión influencian en la percepción del dolor en pacientes con cáncer de mama metastásico. La edad promedio fue de 57,3 años; de las 30 participantes, 24 (80%) recibían atención pública; 17 (57%) tenían diagnóstico de cáncer de mama hace más de cinco años; y 27 (90%) solían tener alguna práctica religiosa/espiritual. Aquellas con puntuación de bienestar espiritual superior a la mediana tuvieron una puntuación más baja de síntomas depresivos (3 vs. 6; p =0,021). No hubo diferencias significativas en la mediana de la puntuación total de bienestar espiritual cuando se estratificó por la percepción mediana del dolor (31,5% vs. 28,5%; p =0,405). Una mayor sensación de bienestar espiritual se relacionó a bajas tasas de depresión.

Sedação paliativa terminal no Brasil: revisão integrativa da literatura / Palliative sedation in Brazil: an integrative literature review / Sedación paliativa terminal en Brasil: revisión integradora de la literatura

Resumo A sedação paliativa está inserida no amplo espectro de práticas e condutas dos cuidados paliativos. Seu objetivo principal não é adiantar o fim da vida, mas sim prover conforto e alívio dos sintomas em uma condição de vida terminal. A prática diverge opiniões tanto no ambiente acadêmico e profissional quanto no social e religioso. Como objetivo, esta revisão integrativa da literatura buscou discussões e pesquisas mais pertinentes no cenário brasileiro, a fim de contribuir para a construção de uma noção mais atualizada e adequada ao contexto contemporâneo quanto à sedação paliativa. Questões como surgimento, opinião de médicos e estudantes, fatores bioéticos e desafios quanto à aplicação compõem a discussão da sedação paliativa na terminalidade. Todavia, a literatura disponível sobre a temática ainda é escassa, permeada de aspectos sociais, éticos, religiosos e de profissionais que demandam interpretações individuais e consenso entre as esferas sociais.

Abstract Palliative sedation integrates the broad spectrum of practices and approaches in palliative care. Its main objective is not to anticipate the end of life, but to provide comfort and symptom relief for terminal conditions; however, opinions in academic, professional, social, and religious contexts differ about its application. This integrative literature review gathers relevant discussions and research in the Brazilian context to contribute to a more updated and appropriate understanding of palliative sedation. Discussions on palliative sedation bring issues regarding its emergence, the opinions of physicians and students, bioethical factors, and challenges. However, the available literature on this topic is scarce, encompassing social, ethical, religious, and professional aspects that require individual interpretations and consensus among social spheres.

Resumen La sedación paliativa integra el amplio conjunto de prácticas y acciones de los cuidados paliativos. Su objetivo principal no es acelerar el final de la vida, sino proporcionar confort y alivio de los síntomas de los pacientes terminales. Esta práctica genera opiniones divergentes tanto en el ámbito académico y profesional como en el social y religioso. Esta revisión integradora de la literatura busca levantar las discusiones e investigaciones más pertinentes en el escenario brasileño para contribuir a la construcción de una noción más actualizada y adecuada contemporáneamente sobre sedación paliativa. El surgimiento, la opinión de médicos y estudiantes, los factores bioéticos y los desafíos en la aplicación constituyen temas de discusión sobre la sedación paliativa en el final de la vida. Sin embargo, la literatura disponible sobre este tema sigue siendo escasa, permeada de cuestiones sociales, éticas, religiosas y profesionales que requieren interpretaciones individuales y consenso entre las esferas sociales.

Sedação paliativa para controle de sofrimento existencial refratário: um fluxograma / Palliative sedation for refractory psychological distress management: a flowchart / Sedación paliativa para controlar el sufrimiento existencial refractario: diagrama de flujo

Resumo Há pouco consenso na literatura sobre como deve ocorrer o manejo do sofrimento existencial refratário, um desafio clínico dramático que pode ocorrer no contexto da terminalidade. Este artigo apresenta um relato de caso de uma paciente internada no Hospital de Apoio de Brasília que necessitou de sedação paliativa para alívio de sofrimento existencial refratário e obteve controle satisfatório de sintomas. Também foi elaborado fluxograma decisório, embasado em revisão que inclui as diretrizes europeias de sedação paliativa, uma ferramenta útil para clínicos em cenários de cuidados paliativos.

Abstract There is little consensus in the literature on how refractory psychological distress, a serious clinical challenge that may occur at end of life, should be managed. This case report focuses on a patient hospitalized at the Hospital de Apoio in Brasília, who required palliative sedation for refractory psychological distress relief and obtained satisfactory symptom control. A flowchart was elaborated based on bibliographic review which included the European guidelines for palliative sedation, a useful tool for clinical cases in palliative care.

Resumen Existe poco consenso en la literatura sobre cómo manejar el sufrimiento existencial refractario, un desafío clínico que puede ocurrir en el contexto del fin de la vida. Este artículo presenta el reporte de caso de un paciente ingresado en el Hospital de Apoyo de Brasília, quien requirió sedación paliativa para aliviar el sufrimiento existencial refractario y obtuvo un control satisfactorio de los síntomas. También se elaboró un diagrama de flujo para la toma de decisiones, basado en una revisión que incluye las directrices europeas para la sedación paliativa, una herramienta útil para los clínicos en el contexto de cuidados paliativos.

Bioética aplicada aos cuidados paliativos: questão de saúde pública / Bioethics applied to palliative care: a public health issue / Bioética aplicada a los cuidados paliativos: una cuestión de salud pública

Resumo Cuidados paliativos são um conjunto de ações que visam melhorar a qualidade de vida do paciente e de sua família quando a doença já não responde a tratamentos curativos. Abrangem cuidados físicos, psicológicos, espirituais e sociais, entendendo a morte como um processo natural, não acelerando nem retardando seu desfecho. Esta revisão integrativa qualitativa selecionou 131 artigos sobre bioética e cuidados paliativos publicados nos últimos cinco anos, analisando 10 deles. Esses estudos destacam a importância da bioética no contexto dos cuidados paliativos, abordando temas como definição, morte, final de vida e a necessidade de equipe multiprofissional interdisciplinar. A espiritualidade também desempenha papel relevante, com o paciente e a família no centro das decisões, baseadas em uma comunicação eficaz. Cuidados paliativos buscam proporcionar conforto, dignidade e suporte integral para pacientes em fase avançada de doenças, permitindo que tenham o máximo de qualidade de vida possível em seus últimos momentos.

Abstract Palliative care is a set of actions aimed at improving patients' and family members' quality of life when no curative treatment is available. It encompasses physical, psychological, spiritual and social care, understanding death as a natural process whose outcome should be accelerated or delayed. Of the 131 articles on bioethics and palliative care published in the last five years selected, this integrative review analyzes 10. These studies highlight the importance of bioethics for palliative care, addressing themes such as definitions, death, end of life and the need for a multi-professional interdisciplinary team. Spirituality also plays a relevant role, putting the patient and family members as central to decisions made based on effective communication. Palliative care aims to provide comfort, dignity and comprehensive support for patients with advanced illnesses, allowing them the maximum quality of life possible.

Resumen Los cuidados paliativos constituyen acciones para mejorar la calidad de vida de los pacientes y sus familias cuando la enfermedad ya no responde a los tratamientos curativos. Abarcan la atención física, psicológica, espiritual y social, considerando la muerte como un proceso natural y sin acelerar ni retrasar su desenlace. Esta revisión integradora cualitativa seleccionó 131 artículos sobre bioética y cuidados paliativos publicados en los últimos cinco años, y analizó diez. Los estudios destacan la importancia de la bioética en los cuidados paliativos, abordando cuestiones como la definición, la muerte, el final de la vida y la necesidad de un equipo interdisciplinar multiprofesional. La espiritualidad también desempeña un papel importante, con el paciente y la familia en el centro de las decisiones basadas en una comunicación eficaz. Estos cuidados proporcionan confort, dignidad y apoyo integral a los pacientes terminales permitiéndoles una mayor calidad de vida posible en sus últimos momentos.

Testamento vital sob a ótica de enfermeiros que assistem pacientes em situação de terminalidade / Living will from the perspective of nurses caring for terminally ill patients / El testamento vital en la perspectiva de los enfermeros que atienden a pacientes terminales

Objetivos: conhecer a representação do Testamento Vital para os enfermeiros que atuam na assistência à pacientes em situação de terminalidade. Métodos:estudo de abordagem qualitativa, realizado em hospital público universitário de alta complexidade localizado na cidade de São Paulo, São Paulo, Brasil, com 15 enfermeiros que atuam na assistência à pacientes terminais, por meio de entrevista norteada pela questão "Fale a respeito do Testamento Vital". A análise dos dados foi desenvolvida pelo Discurso do Sujeito Coletivo. Resultados: identificou-se três categorias que compõem o Discurso do Sujeito Coletivo dos enfermeiros em relação ao testamento vital: "o enfermeiro frente às diretivas antecipadas de vontade"; "o enfermeiro frente à família do paciente em terminalidade" e "o enfermeiro frente ao médico do paciente em terminalidade". Conclusão: o testamento vital representa, na perspectiva dos enfermeiros, a autonomia e o direito do paciente pelas decisões nas situações de terminalidade que devem ser compartilhadas com seus familiares e profissionais de saúde.

Objectives: to know the representation of the living will for nurses working in the care of terminally ill patients. Methods: a qualitative study conducted in a high complexity public university hospital located in the city of São Paulo, São Paulo, Brazil. An interview guided by the question "Talk about the living will" was performed with 15 nurses working in the care of terminally ill patients. Data analysis was performed using the Discourse of the Collective Subject. Results: three categories that make up nurses' Collective Subject Discourse in relation to living wills were identified: "the nurse before advance directives"; "the nurse before the terminally ill patient's family" and "the nurse before the terminally ill patient's physician". Conclusion: from the perspective of nurses, the living will represent the patient's autonomy and right to make decisions in terminally ill situations that must be shared with their family members and health professionals

Objetivos: conocer la representación del Testamento Vital para enfermeros que actúan en el cuidado de enfermos terminales. Métodos: estudio cualitativo realizado en un hospital universitario público de alta complejidad ubicado en la ciudad de São Paulo, São Paulo, Brasil. Se realizó una entrevista guiada por la pregunta "Hablemos del Testamento Vital" con 15 enfermeros que actúan en el cuidado de pacientes terminales. El análisis de los datos se realizó utilizando el Discurso del Sujeto Colectivo. Resultados: se identificaron tres categorías que componen el Discurso del Sujeto Colectivo de los enfermeros en relación a los testamentos vitales: "el enfermero frente a las directivas anticipadas"; "la enfermera frente a la familia del enfermo terminal" y "la enfermera frente al médico del enfermo terminal". Conclusión: en la perspectiva de los enfermeros, el testamento vital representa la autonomía y el derecho del paciente a tomar decisiones en situaciones terminales que deben ser compartidas con sus familiares y profesionales de la salud.

Análisis de costo-efectividad de los cuidados paliativos a pacientes oncológicos de fin de vida / Cost-effectiveness analysis of palliative care of cancer patients in the end of life / Análise de custo-efetividade dos cuidados paliativos de pacientes oncológicos na terminalidade da vida

En pacientes con enfermedad terminal, los servicios de cuidados paliativos domiciliarios pueden alinear sus preferencias de cuidado en domicilio con resultados sanitarios deseables. El objetivo fue estudiar la costo-efectividad de los cuidados paliativos domiciliarios en pacientes oncológicos en el último año de vida en el subsector público de salud de una provincia argentina. Se desarrolló un modelo de Markov de costo-efectividad desde una perspectiva social y del financiador de salud, de modo que el mismo pudiera reflejar la realidad de los cuidados paliativos domiciliarios en el ámbito local, en comparación con los cuidados habituales. Se calcularon los costos directos para el sistema de salud, con base en información local, así como también los costos indirectos de los cuidados informales no remunerados. La provisión de cuidados paliativos incrementó en un 10,32% la probabilidad que los pacientes fallezcan en el hogar, en relación con los cuidados habituales, con un ahorro anual de USD 750 y USD 1.012 por paciente desde la perspectiva social y del financiador, respectivamente, en el subsector público de salud de Río Negro. Tanto desde la perspectiva social como del financiador, la estrategia de implementación de un servicio organizado de cuidados tiene una mayor efectividad, medida en porcentaje de pacientes que fallecen en su domicilio, a un menor costo. El principal inductor de costos corresponde, desde la perspectiva social, a los cuidados informales provistos por las familias, mientras que desde la perspectiva del financiador corresponde a los salarios del personal de salud.

Home palliative care services of terminal patients may associate home care preferences with desirable health outcomes. This study aimed to evaluate the cost-effectiveness of home palliative care of cancer patients in the last year of life in the public health subsector in a province of Argentina. A cost-effectiveness Markov model was developed from a social and the health funder's perspective in order to reflect the reality of home palliative care at the local level compared with usual care. Direct costs to the health system and indirect costs of unpaid informal care were estimated based on local information. Palliative care increased the likelihood of patients dying at home by 10.32% compared with usual care, with annual savings of USD 750 and USD 1,012 per patient, respectively, from both the social and the funder's perspective in the public health subsector in Río Negro. From both the social and financial perspective, the strategy to implement organized care services was more effective and lower-cost, measured by the percentage of patients who died at home. From a social perspective, the main cost inducer was the formal care provided by families, but from the funder's perspective, it refers to the salaries of the health team.

Os serviços de cuidados paliativos domiciliares de pacientes terminais podem associar as preferências de cuidado domiciliar com resultados desejáveis de saúde. O objetivo deste texto foi avaliar a relação custo-efetividade dos cuidados paliativos domiciliares em pacientes oncológicos no último ano de vida, no subsetor de saúde pública de uma província na Argentina. Um modelo Markov de custo-efetividade foi desenvolvido a partir de uma perspectiva social e do financiador de saúde para que pudesse refletir a realidade dos cuidados paliativos domiciliares em âmbito local comparado aos cuidados habituais. Os custos diretos para o sistema de saúde e os custos indiretos de cuidados informais não remunerados foram calculados com base em informações locais. A prestação de cuidados paliativos aumentou 10,32% a probabilidade de os doentes morrerem em casa em relação com os cuidados habituais, com uma economia anual de USD 750 e USD 1.012 por paciente, respetivamente, na perspectiva social e do financiador, no subsetor da saúde pública de Rio Negro. Tanto do ponto de vista social como no financeiro, a estratégia de implantação de serviços de cuidados organizados foi mais eficaz e com menor custo, medida pelo percentual de pacientes que faleceram em casa. O principal indutor de custos corresponde, do ponto de vista social, aos cuidados informais prestados pelas famílias, enquanto do ponto de vista do financiador se refere aos salários da equipe de saúde.

Limitação terapêutica para crianças: revisão sistemática sobre final de vida / Therapeutic limitation for children: a systematic review on end-of-life / Limitación terapéutica para niños: una revisión sistemática sobre el final de la vida

Resumo Esta revisão sistemática visa identificar dificuldades enfrentadas por profissionais no manejo clínico de crianças em final de vida. Para tanto, realizou-se busca de artigos científicos nas bases de dados SciELO e LILACS por meio dos descritores "limitação de suporte terapêutico", "terminalidade" e "medidas de conforto", combinados com o descritor "crianças". Do total de 102 trabalhos completos encontrados, nove contemplaram os critérios de inclusão para a amostra do estudo. Os resultados apontam dificuldades em relação à tomada de decisões e à limitação terapêutica de pacientes infantis. Conclui-se que, quando se sentem melhor preparados para trabalhar com questões referentes ao processo de morte e morrer, os profissionais podem prestar um cuidado mais humanizado a pacientes e familiares.

Abstract This systematic review sought to identify difficulties faced by professionals in the clinical management of end-of-life child patients. Bibliographic search was conducted on the SciELO and LILACS databases using the descriptors "therapeutic limitation," "hospice care" and "comfort measures," combined with the descriptor "child." Of the 102 complete studies identified, nine met the established inclusion criteria. The results point to difficulties regarding decision making and therapeutic limitation for infant patients. In conclusion, when professionals feel better prepared to address issues related to the process of death and dying, they can provide more humanized care to patients and families.

Resumen Esta revisión sistemática tiene por objetivo identificar las dificultades que enfrentan los profesionales en el manejo clínico de los niños al final de la vida. Para ello, se realizó una búsqueda de artículos científicos en las bases de datos SciELO y LILACS utilizando las palabras clave "limitación del apoyo terapéutico", "final de la vida" y "medidas de confort", combinadas con "niños". Del total de 102 artículos completos encontrados, nueve cumplieron con los criterios de inclusión para la muestra del estudio. Los resultados apuntan a dificultades con relación a la toma de decisiones y a limitaciones terapéuticas de los pacientes pediátricos. Se concluye que los profesionales cuando se sienten más preparados para lidiar con cuestiones relacionadas con el proceso de muerte y morir pueden brindar una asistencia más humanizada a los pacientes y familias.

Protocolo de assistência de enfermagem ao paciente em cuidado terminal: Construção através de revisão integrativa / Protocolo de asistencia de enfermería para pacientes en cuidados terminales: Construcción mediante revisión integrativa / Nursing assistance protocol for patients in terminal care: Construction through integrative review

Objetivo: Construir protocolo de enfermagem para o manejo de pacientes em terminalidade. Metodologia: Revisão integrativa da literatura, utilizando as bases de dados da BVS, CINAHL, SCOPUS, Web of Science, Embase e PUBMED, sem limites cronológicos, nos idiomas português, inglês e espanhol. Resultados: Os diagnósticos de enfermagem da classificação NANDA 2021-2023 mais prevalentes pertenciam ao domínio atividade/repouso, seguidos pelo domínio enfrentamento/tolerância ao estresse e segurança/proteção. Para cada diagnóstico prevalente estabeleceu-se intervenções de enfermagem, plausíveis no contexto de terminalidade. Conclusão: O protocolo de assistência de enfermagem ao paciente em cuidado terminal é um importante ponto de partida para se estabelecer condutas de enfermagem e fomentar a prática assistencial aos pacientes em terminalidade.(AU)

Objective: To build a nursing protocol for the management of terminally ill patients. Methodology: Integrative literature review, using the VHL, CINAHL, SCOPUS, Web of Science, Embase and PUBMED databases, without chronological limits, in Portuguese, English and Spanish. Results: The most prevalent NANDA 2021-2023 classification nursing diagnoses belonged to the activity/rest domain, followed by the coping/stress tolerance and safety/protection domains. For each prevalent diagnosis, plausible nursing interventions were established in the context of terminality. Conclusion: The nursing care protocol for terminally ill patients is an important starting point for establishing nursing behaviors and fostering care practice for terminally ill patients(AU)

Objetivo: Construir un protocolo de enfermería para el manejo de pacientes terminales. Metodología: Revisión integrativa de la literatura, utilizando las bases de datos BVS, CINAHL, SCOPUS, Web of Science, Embase y PUBMED, sin límites cronológicos, en portugués, inglés y español. Resultados: Los diagnósticos de enfermería de la clasificación NANDA 2021-2023 más prevalentes pertenecieron al dominio actividad/descanso, seguido por los dominios afrontamiento/tolerancia al estrés y seguridad/protección. Para cada diagnóstico prevalente, se establecieron intervenciones de enfermería plausibles en el contexto de la terminalidad. Conclusión: El protocolo de atención de enfermería al paciente terminal es un importante punto de partida para establecer comportamientos de enfermería y fomentar la práctica del cuidado al paciente terminal.(AU)

Cuidados paliativos, cuidados de fin de vida y COVID-19: revisión de alcance / Palliative care, end-of-life care, and COVID-19: A scoping review / Cuidados paliativos, cuidados em fim de vida e COVID-19: uma revisão do escopo

Introducción: La COVID-19 exacerbó el déficit en la prestación de cuidados paliativos y de fin de vida y aumentó la sobrecarga de los servicios de salud, pero se desconoce la extensión de la literatura sobre dicho tema. Objetivo: Describir la evidencia sobre la prestación de cuidados paliativos y de fin de vida en adultos durante la pandemia de COVID-19. Materiales y métodos: Revisión de alcance según el marco metodológico de Arksey y O'Malley. La búsqueda se realizó en inglés y español; en PubMed, Scielo, la Biblioteca Virtual en Salud, y la base de datos de investigación en Coronavirus. Las publicaciones se filtraron por título, resumen y lectura completa. Los resultados se sintetizaron de acuerdo con la técnica "charting". Resultados: Se incluyeron 51 publicaciones. En total emergieron cinco categorías: 1) caracterización de los cuidados paliativos, 2) planificación avanzada de cuidados, 3) acompañamiento a familiares y seres queridos, 4) telesalud, 5) rol de enfermería en los cuidados paliativos. Discusión:: El coste social de la pandemia se refleja en el aumento en la carga de unidades de cuidados paliativos, mayor porcentaje de mortalidad y la disminución de la edad promedio de fallecimiento. Futuros estudios deben abordar el impacto psicosocial en los seres queridos de los pacientes, así como el impacto a nivel comunitario. Conclusión: Los cuidados paliativos y de fin de vida constituyen una herramienta fundamental para la atención de pacientes con COVID-19. La pandemia potenció el desarrollo de las tecnologías de la información y las comunicaciones para la prestación de cuidados paliativos.

Introduction:COVID-19 exacerbated the deficit of palliative and end-of-life care provision and increased healthcare services' burden, but the extent of the literature on that topic is unknown. Objetive: To describe the evidence of palliative and end-of-life care provision in adults during the COVID-19 pandemic. Materials and Methods:The scoping review was performed according to Arksey and O'Malley's methodological framework. The search was conducted in English and Spanish, in PubMed, SciELO, the Virtual Health Library, and the Coronavirus research database. The articles were filtered by title, abstract, and full text. The results were summarized according to the charting technique. Results: Fifty-one publications were included. A total of five categories emerged: 1) Palliative care characteristics, 2) advanced care planning, 3) support for family members and loved ones, 4) telehealth, and 5) nursing role in palliative care. Discussion:The social cost of the pandemic is reflected in the increased burden of palliative care units, higher mortality rates, and the decreased average age of death. Future studies should address the psychosocial impact of COVID-19 on patients' loved ones, as well as the impact at the community level. Conclusions: Palliative and end-of-life care is an essential tool for COVID-19 patients care. The pandemic has enhanced the development of information and communication technologies to deliver palliative care.

Introdução: A COVID-19 exacerbou o déficit na prestação de cuidados paliativos e em fim de vida e aumentou a sobrecarga sobre os serviços de saúde, mas a extensão da literatura sobre tal tópico é desconhecida. Objetivo: Descrever as evidências sobre a prestação de cuidados paliativos e de fim de vida em adultos durante a pandemia da COVID-19. Materiais e Métodos: Revisão do escopo de acordo com a estrutura metodológica de Arksey e O'Malley. A pesquisa foi realizada em inglês e espanhol; PubMed, Scielo, a Biblioteca Virtual de Saúde e o banco de dados de pesquisa do Coronavirus. As publicações foram filtradas por título, resumo e texto completo. Os resultados foram sintetizados de acordo com a técnica gráfica. Resultados: 51 publicações foram incluídas. No total, surgiram cinco categorias: 1) caracterização dos cuidados paliativos, 2) planejamento de cuidados avançados, 3) acompanhamento de parentes e entes queridos, 4) telesaúde, 5) papel de enfermagem nos cuidados paliativos. Discussão: O custo social da pandemia se reflete no aumento da carga sobre as unidades de cuidados paliativos, maiores taxas de mortalidade e uma diminuição da idade média de morte. Estudos futuros devem abordar o impacto psicossocial sobre os entes queridos dos pacientes, bem como o impacto a nível comunitário. Conclusões: Os cuidados paliativos e de fim de vida são uma ferramenta fundamental para o cuidado de pacientes com COVID-19. A pandemia tem melhorado o desenvolvimento das tecnologias de informação e comunicação para o fornecimento de cuidados paliativos.

Experiências e condutas do profissional de saúde diante do óbito neonatal: revisão integrativa / Experiencias y conductas de los profesionales de la salud ante la muerte neonatal: revisión integradora / Experiences and behaviors of healthcare professionals in the face of neonatal death: an integrative review

RESUMO Objetivo: identificar as experiências e a condutas do profissional de saúde diante do óbito neonatal disponíveis na literatura. Método: estudo bibliográfico descritivo, do tipo revisão integrativa, com delimitação temporal de 2009 a 2020, realizado nas bases de dados LILACS, BDENF, MEDLINE, Scopus, Web of Science, CINAHL e biblioteca virtual SciELO, por duas pesquisadoras de forma independente em junho de 2021. Foram selecionados 511 artigos, mas somente 21 compuseram o corpus final do estudo após a aplicação dos critérios de inclusão/exclusão. Resultados: os estudos evidenciaram que as experiências dos profissionais diante do óbito são permeadas por sentimentos ambivalentes que influenciam na escolha de suas estratégias de enfrentamento. Dentre as condutas adotadas pelos profissionais, a comunicação clara e sensível, o acolhimento ao luto dos familiares, o respeito à decisão dos pais em relação aos cuidados com o recém-nascido e a entrega de lembranças foram consideradas atitudes positivas para a superação do óbito neonatal. Considerações finais: os resultados mostram o despreparo dos profissionais para lidar com o processo de morte do recém-nascido e a necessidade de haver estratégias de educação permanente voltada ao óbito neonatal.

RESUMEN Objetivo: identificar las experiencias y conductas de los profesionales de la salud ante la muerte neonatal disponibles en la bibliografía. Método: estudio bibliográfico descriptivo, tipo revisión integradora, con delimitación temporal de 2009 a 2020, realizado en las bases de datos LILACS, BDENF, MEDLINE, Scopus, Web of Science, CINAHL y la biblioteca virtual SciELO, por dos investigadoras de forma independiente en junio de 2021. Se seleccionaron 511 artículos, pero sólo 21 constituyeron el corpus final del estudio tras aplicar los criterios de inclusión/exclusión. Resultados: los estudios evidencian que las experiencias de los profesionales en el ámbito laboral están impregnadas de sentimientos ambivalentes que influyen en la elección de sus estrategias de enfrentamiento. Entre las conductas adoptadas por los profesionales, se destacan: la comunicación clara y sensible; atención al duelo de los familiares; el respeto a la decisión de los países en relación a los cuidados con el recién nacido; y la entrega de las memorias, fueron consideradas actitudes positivas para la superación del fallecimiento neonatal. Consideraciones finales: los resultados muestran la falta de preparación de los profesionales para afrontar el proceso de muerte del recién nacido y la necesidad de estrategias de formación continua centradas en la muerte neonatal.

ABSTRACT Objective: to identify the experiences and behaviors of healthcare professionals in the face of neonatal death Available from the literature. Method: descriptive bibliographical study, of the integrative review type, with temporal delimitation from 2009 to 2020, carried out in the LILACS, BDENF, MEDLINE, Scopus, Web of Science, CINAHL and SciELO virtual library databases, by two researchers independently in June de 2021. A total of 511 articles were selected, but only 21 made up the final corpus of the study after applying the inclusion/exclusion criteria. Results: the studies showed that the experiences of professionals in the face of death are permeated by ambivalent feelings that influence the choice of their coping strategies. Among the behaviors adopted by the professionals, clear and sensitive communication, welcoming the grieving of family members, respect for the parents' decision regarding the care of the newborn and the delivery of memories were considered positive attitudes for overcoming neonatal death. Final considerations: the results show the unpreparedness of healthcare professionals to deal with the newborn's death process and the need for permanent education strategies focused on neonatal death.