Perfil dos pacientes em cuidados paliativos na atenção domiciliar em um serviço do Sul do Brasil / Profile of patients under palliative care in home care in a service in Southern Brazil / Perfil de pacientes en cuidados paliativos en atención domiciliaria en un servicio del Sur de Brasil

Introdução: A Medicina de Família e Comunidade, como forma de cuidado mais próxima ao paciente, pode ofertar cuidados paliativos (CP) de modo integral e individualizado. Assim, torna-se relevante caracterizar a população atendida de modo a favorecer o desenvolvimento e implementação de estratégias para a ampliação da assistência de CP na Rede de Atenção à Saúde. Objetivo: Apresentar um panorama do perfil epidemiológico dos pacientes em CP domiciliares, no período de janeiro de 2018 a outubro de 2021, assistidos pelo Serviço de Atenção Domiciliar (SAD), vinculado ao Hospital Municipal de São José (HMSJ), na cidade de Joinville (SC). Métodos: Série de casos retrospectiva, incluindo os participantes do SAD que evoluíram a óbito no período da pesquisa. Os critérios de exclusão foram os participantes vivos no período da pesquisa; aqueles registrados, mas não atendidos pela equipe médica; os que receberam alta do programa; pacientes com prontuário incompleto; prontuários duplicados e menores de 18 anos. Os dados coletados incluíram número identificador do prontuário, idade, sexo, estado civil, diagnóstico, data de entrada no SAD, data de óbito, tempo de permanência no SAD, desfecho de óbito e via pela qual foi atestado o óbito, se recebeu analgesia com opioides e se fez uso de mais de um opioide, e se recebeu analgesia em bomba de infusão contínua (BIC) e/ou sedação paliativa. Os dados foram coletados pelos pesquisadores de prontuários médicos, codificados e conferidos duplamente. Foram realizadas então média e mediana das variáveis, bem como correlação dos dados e análise dos resultados. Resultados: Duzentos e oito pacientes foram incluídos; a média de idade foi 66,8 anos; as doenças neoplásicas foram as mais prevalentes (94,2%), destacando-se as neoplasias de trato gastrointestinal (21,1%), pulmonares (12,5%) e de mama (9,5%). A maior parte dos pacientes (37,9%) permaneceu sob os cuidados do SAD por mais de 30 dias e 75,9% da população analisada veio a óbito em ambiente domiciliar, e 45,67% desses indivíduos foram atestados via Serviço de Verificação de Óbitos e 30,2% via SAD. Quanto ao manejo da dor, 87,1% fizeram uso de opioides, mais frequentemente a morfina. Quanto à sedação paliativa, esta esteve presente em apenas 25,48%, prevalecendo o uso de midazolam. Conclusões: Neste estudo, encontrou-se maior prevalência de pacientes acometidos por doenças neoplásicas em fase final de vida, com necessidade de controle de dor adequado ­ contexto no qual o SAD possibilita o atendimento especializado ao paciente e seus familiares em um ambiente de maior conforto.

Introduction: Family Practice, being closer to the patient, can offer comprehensive and individualized Palliative Care (PC). Therefore, characterizing the population served becomes essential to support the development and implementation of strategies to expand PC services in the Health Care Network. Objective: Present an overview of the epidemiological profile of patients receiving home-based palliative care from January 2018 to October 2021, supported by Home Care Services (HCS) affiliated with Hospital Municipal São José (HMSJ) in the city of Joinville (SC). Methods: Retrospective case series with Participants in HCS who passed away during the study period were included. Exclusion criteria comprised living participants, those registered but not attended by the medical team, program discharges, incomplete medical records, duplicates, and individuals under 18 years of age. Collected data included record identifier, age, gender, marital status, diagnosis, entry and death dates, duration of HCS stay, death outcome and certification method, opioid analgesia use, use of multiple opioids, and use of continuous infusion pump (CIP) analgesia and/or palliative sedation. Researchers collected and double-checked the coded data, performed average and median calculations, correlated data, and analyzed results. Results: Two hundred and eight patients were included; average age was 66.8 years; neoplastic diseases were most prevalent (94.2%), particularly gastrointestinal (21.1%), pulmonary (12.5%), and breast cancers (9.5%). The majority of patients (37.9%) remained under HCS care for over 30 days, and 75.9% of the analyzed population passed away at home, with 45.67% certified by the Death Verification Service and 30.2% by HCS. Regarding pain management, 87.1% used opioids, most commonly morphine. Palliative sedation was present in only 25.48%, predominantly using midazolam. Conclusions: This study found a higher prevalence of patients with end-stage neoplastic diseases requiring adequate pain control, an area where HCS provides specialized care in a more comfortable environment.

Introducción: La Medicina Familiar y Comunitaria, como forma de atención más cercana al paciente, puede ofrecer Cuidados Paliativos (CP) de forma integral e individualizada. Por lo tanto, resulta relevante caracterizar la población atendida con el fin de favorecer el desarrollo e implementación de estrategias para ampliar la asistencia en CP en la red de Atención a la Salud. Objetivo: Presentar una visión general del perfil epidemiológico de los pacientes que recibieron cuidados paliativos domiciliarios, de enero de 2018 a octubre de 2021, atendidos por el Servicio de Atención de Salud a Domicilio (SAD), vinculado al Hospital Municipal São José (HMSJ), de la ciudad de Joinville (SC). Método: Serie de casos retrospectiva, incluyendo participantes del SAD que fallecieron durante el período de investigación. Los criterios de exclusión fueron participantes vivos durante el período de investigación; pacientes registrados pero no atendidos por el equipo médico; los que tuvieron alta del programa; con historial médico incompleto, historial médico duplicado y menores de 18 años. Los datos recogidos incluyeron número de identificación del historial médico, edad, sexo, estado civil, diagnóstico, fecha de ingreso al SAD, fecha de fallecimiento, tiempo de estancia en el SAD, desenlace de la muerte y vía por la que se certificó la muerte; si recibió analgesia con opioides y si usaron más de un opioide, y si recibieron analgesia con bomba de infusión continua (BIC) y/o sedación paliativa. Los datos fueron recopilados por investigadores de registros médicos, codificados y verificados dos veces. Luego se realizó la media y mediana de las variables, así como la correlación de datos y el análisis de los resultados. Resultados: Se incluyeron doscientos ocho pacientes; la edad promedio fue de 66,8 años; las enfermedades neoplásicas fueron las más prevalentes (94,2%), destacándose las neoplasias del tracto gastrointestinal (21,1%), pulmón (12,5%) y mama (9,5%). La mayoría de los pacientes (37,9%) permanecieron bajo atención del SAD más de 30 días y el 75,9% de la población analizada falleció en su domicilio, de los cuales el 45,67% fue certificado a través del Servicio de Urgencias de Verificación de Defunciones y el 30,2% a través del SAD. En cuanto al manejo del dolor, el 87,1% utilizaba opioides, con mayor frecuencia morfina. En cuanto a la sedación paliativa, estuvo presente solo en el 25,48%, prevaleciendo el uso de midazolam. Conclusiones: En este estudio se encontró una mayor prevalencia de pacientes afectados por enfermedades neoplásicas en la etapa final de la vida, que necesitan un control adecuado del dolor, un contexto en el que el SAD permite una atención especializada a los pacientes y sus familias en un ambiente más confortable.

A importância dos cuidados paliativos exercidos por médicos de família e comunidade na Atenção Primária à Saúde: uma revisão narrativa / The importance of palliative care performed by family practice doctors in primary health care: a narrative review / La importancia de los cuidados paliativos realizados por médicos de familia y comunitario en la Atención Primaria de Salud: una revisión narrativa

Introdução: A terminalidade é uma situação cada vez mais vivenciada nos serviços de saúde em razão da progressão da expectativa de vida da população e, consequentemente, do incremento de pacientes com doenças crônicas graves. No Brasil, os serviços de cuidados paliativos ainda se encontram centralizados nos serviços de atenção terciária. Entretanto, em diversos países, a Atenção Primária à Saúde tem sido a grande prestadora e coordenadora de cuidados paliativos dos usuários, em prol da descentralização dessa assistência e da promoção do cuidado integral. Objetivo: Realizar uma revisão narrativa da literatura, a fim de identificar a relação dos médicos de família e comunidade na atuação de cuidados paliativos na Atenção Primária à Saúde. Métodos: Revisão bibliográfica por meio do acesso às bases de dados: Portal da Coordenação de Aperfeiçoamento de Pessoal de Nível Superior (CAPES), Literatura Latino-Americana e do Caribe em Ciências da Saúde (LILACS), Scientific Electronic Library Online (SciELO) e PubMed. Foram selecionados 16 artigos, os quais foram submetidos a análise temática e posterior discussão das principais características que colaboram para a maior atuação dos médicos de família e comunidade em cuidados paliativos. Resultados: Observou-se a importância da atuação dos médicos de família e comunidade em cuidados paliativos no âmbito da Atenção Primária à Saúde, bem como a interligação entre as duas especialidades, os desafios existentes nesse caminho e os benefícios dessa prática. Conclusões: A oferta de cuidados paliativos pelos médicos de família e comunidade na atenção primária favorece o acesso e acompanhamento dos pacientes. Entretanto, a atuação dos profissionais das Equipes de Saúde da Família nessa linha de cuidado ainda é insuficiente em razão da escassa capacitação na área.

Introduction: Terminality is a situation increasingly experienced in healthcare services due to the progression of the population's life expectancy and, consequently, the increase in patients with serious chronic diseases. In Brazil, Palliative Care services are still centralized in tertiary care services. However, in many countries, Primary Health Care has been the major provider and coordinator of Palliative Care for users, in favor of decentralizing this assistance and promoting comprehensive care. Objective: To carry out a narrative literature review to identify the relationship of Family Practice Doctors in the performance of Palliative Care in Primary Health Care. Methods: Bibliographic review through access to databases: CAPES, LILACS, SciELO, and PUBMED. Sixteen articles were selected, which were submitted to thematic analysis and subsequent discussion of the main characteristics that contribute to the greater performance of Family Practice Doctors in Palliative Care. Results: The importance of Family Practice Doctors in Palliative Care within the scope of Primary Health Care was observed, as well as the interconnection between the two specialties, the challenges along this path, and the benefits of this practice. Conclusions: The offer of Palliative Care by Family Practice Physicians in Primary Care favors the access and monitoring of patients. However, the performance of the professionals in Family Health Teams in this line of care is still insufficient due to the lack of training in the area.

Introducción: La terminalidad es una situación cada vez más experimentada en los servicios de salud debido a la progresión de la esperanza de vida de la población y, en consecuencia, al aumento de pacientes con enfermedades crónicas graves. En Brasil, los servicios de Cuidados Paliativos todavía están centralizados en los servicios de atención terciaria. Sin embargo, en varios países, la Atención Primaria de Salud ha sido la principal proveedora y coordinadora de los Cuidados Paliativos para los usuarios, a favor de descentralizar esta asistencia y promover la atención integral. Objetivo: Realizar una revisión narrativa de la literatura, con el fin de identificar la relación de los Médicos de Familia y Comunitarios en la actuación de los Cuidados Paliativos en la Atención Primaria de Salud. Métodos: Revisión bibliográfica mediante acceso a bases de datos: Portal CAPES, LILACS, SciELO y PubMed. Fueron seleccionados dieciséis artículos, que fueron sometidos al análisis temático y posterior discusión de las principales características que contribuyen para una mayor actuación de los Médicos de Familia y Comunidad en Cuidados Paliativos. Resultados: Se constató la importancia del trabajo de los Médicos de Familia y Comunitarios en Cuidados Paliativos en el ámbito de la Atención Primaria de Salud, así como la interconexión entre las dos especialidades, los desafíos que existen en este camino y los beneficios de esta práctica. Conclusiones: La oferta de Cuidados Paliativos por Médicos de Familia y Comunitario en Atención Primaria favorece el acceso y seguimiento de los pacientes. Sin embargo, la actuación de los profesionales de los Equipos de Salud de la Familia en esta línea de atención aún es insuficiente debido a la falta de formación en el área.

Implementación de un modelo de complementación público-privado (AMSJ - ASSE) de Asistencia Paliativa en el departamento de San José, Uruguay

Introducción: En inicios del año 2015 se implementa el convenio de complementación público-privado entre los dos principales prestadores del Departamento de San José - Uruguay: AMSJ y ASSE San José, conformándose así la Unidad Departamental de Medicina Paliativa de San José (UDMP). El convenio tiene como principal objetivo asegurar la asistencia paliativa a todos los usuarios de los prestadores involucrados con los principios fundamentales de calidad, equidad y accesibilidad, siguiendo los lineamientos del Plan Nacional de Cuidados Paliativos del Ministerio de Salud Pública de Uruguay. El objetivo es describir y analizar la experiencia de la implementación del primer modelo de complementación público-privado del país en Cuidados Paliativos (CP). Metodología: Estudio descriptivo analítico, retrospectivo que incluye datos de los primeros siete años de funcionamiento del convenio. Resultados: El convenio de complementación público-privado en el Departamento de San José, permitió la creación de un equipo interdisciplinario que asistió en forma continua a 1422 pacientes provenientes de zonas urbanas y rurales, portadores de diversas patologías. La cobertura departamental de CP aumentó de forma significativa, pasando de 24 % en 2014 a 57% en 2021. Estos resultados se lograron implementando un modelo de asistencia paliativa que asegura la continuidad asistencial en internación, consultorio y domicilio, que permitió respetar la autonomía del paciente, logrando el fallecimiento de 67% de los pacientes en su hogar. La satisfacción de usuarios y familiares de la asistencia brindada fue evaluada como muy buena. Conclusiones: El convenio de complementación resultó ser una herramienta eficiente para favorecer el acceso a CP, evitando la superposición de equipos en la asistencia domiciliaria en todo el departamento de San José.

Introduction: At the beginning of 2015, the public-private complementarity agreement was implemented between the two main providers of the Department of San José Uruguay: AMSJ and ASSE San José, thus forming the Departmental Unit of Palliative Medicine of San José (UDMP). The main objective of the agreement is to ensure palliative care to all users of the providers involved, with the fundamental principles of quality, equity and accessibility, following the guidelines of the National Palliative Care Plan of the Ministry of Public Health of Uruguay. The objective is describe and analyze the experience of implementing the country's first public-private complementation model in Palliative Care (PC). Methodology: Descriptive, analytical, retrospective study that includes data from the first seven years of operation of the agreement. Results: The public-private complementation agreement in the Department of San José allowed the creation of an interdisciplinary team that continuously assisted 1,422 patients from urban and rural areas, with various pathologies. Departmental CP coverage increased significantly, from 24% in 2014 to 57% in 2021. These results were achieved by implementing a palliative care model that ensures continuity of care in hospitalization, office and home, which allowed the patient's autonomy to be respected, achieving the death of 67% of patients at home. The satisfaction of users and family members with the assistance provided was evaluated as very good. Conclusions: The complementation agreement turned out to be an efficient tool to promote access to CP, avoiding the overlap of teams in home care throughout the department of San José.

Introdução: No início de 2015, foi implementado o acordo de complementaridade público-privado entre os dois principais prestadores do Departamento de San José Uruguai: AMSJ e ASSE San José, formando assim a Unidade Departamental de Medicina Paliativa de San José (UDMP). O principal objetivo do acordo é garantir cuidados paliativos a todos os usuários dos prestadores envolvidos, com os princípios fundamentais de qualidade, equidade e acessibilidade, seguindo as diretrizes do Plano Nacional de Cuidados Paliativos do Ministério de Saúde Pública do Uruguai. El objetivo es descrever e analisar a experiência de implementação do primeiro modelo de complementação público-privada em Cuidados Paliativos (CP) do país. Metodologia: Estudo descritivo, analítico, retrospectivo que inclui dados dos primeiros sete anos de vigência do convênio. Resultados: O acordo de complementação público-privada no Departamento de San José permitiu a criação de uma equipe interdisciplinar que atendeu continuamente 1.422 pacientes de áreas urbanas e rurais, com diversas patologias. A cobertura departamental do CP aumentou significativamente, de 24% em 2014 para 57% em 2021. Estes resultados foram alcançados através da implementação de um modelo de cuidados paliativos que garante a continuidade dos cuidados no internamento, no consultório e no domicílio, o que permitiu respeitar a autonomia do doente, atingindo a morte de 67% dos doentes no domicílio. A satisfação dos usuários e familiares com a assistência prestada foi avaliada como muito boa. Conclusões: O convênio de complementação revelou-se uma ferramenta eficiente para promover o acesso à CP, evitando a sobreposição de equipes na atenção domiciliar em todo o departamento de San José.

Experiencias de duelo anticipado en cuidadoras informales de la Región Metropolitana (Chile): cambios ocupacionales

Introducción: La pérdida de un ser querido se construye como una experiencia humana inevitable, que genera una vivencia emocional que impacta tanto al individuo que experimenta la pérdida como a su entorno. Objetivo: Investigar la relación entre los procesos de duelo anticipado y las alteraciones en la participación ocupacional de quienes fueron cuidadoras principales informales de personas con enfermedad terminal en la Región Metropolitana de Chile. Método: Enfoque cualitativo con 7 entrevistas semiestructuradas individuales a cuidadoras adultas en el sur y poniente de la región. Resultados: Fueron categorizadas experiencias y subjetividades que expresan la importancia que las mujeres atribuyen al cuidado de sus familiares, con una escasa demostración emocional durante esta etapa. Además, emergen categorías como rutinas y roles, donde muchas mujeres priorizan el cuidado; redes de apoyo, con relatos frecuentes sobre la falta de ayuda y herramientas más allá de lo económico; y áreas de ocupación afectadas, predominantemente el descanso y sueño, aunque también se menciona el autocuidado y la participación social. Conclusión: Si bien el proceso de duelo anticipado genera dolor y desgaste propio, es el cuidado informal lo que genera cambios en la participación y calidad de vida de las mujeres cuidadoras.

Introdução: A perda de um ente querido é construída como uma experiência humana inevitável, que gera uma vivência emocional que afeta tanto o indivíduo que experimenta a perda quanto seu entorno. Objetivo: investigar a relação entre os processos de luto antecipado e as alterações na participação ocupacional daquelas que foram cuidadoras primárias informais de pessoas com doença terminal na Região Metropolitana do Chile. Método: abordagem qualitativa com 7 entrevistas individuais semiestruturadas com cuidadoras adultas no sul e oeste da região. Resultados: Foram categorizadas experiências e subjetividades que expressam a importância que as mulheres atribuem ao cuidado de seus familiares, com uma escassa demonstração emocional durante essa etapa. Além disso, surgem categorias como rotinas e papéis, em que muitas mulheres priorizam o cuidado; redes de apoio, com relatos frequentes sobre a falta de ajuda e ferramentas além das econômicas; e áreas de ocupação afetadas, predominantemente o descanso e o sono, embora o autocuidado e a participação social também sejam mencionados. Conclusão: Embora o processo de luto antecipado gere dor e desgaste próprio, é o cuidado informal que gera mudanças na participação e na qualidade de vida das mulheres cuidadoras.

Introduction: The loss of a loved one is constructed as an inevitable human experience, which generates an emotional experience that impacts both the individual experiencing the loss and his or her environment. Objective: To investigate the relationship between anticipated grief processes and alterations in the occupational participation of informal primary caregivers of terminally ill persons in the Metropolitan Region of Chile. Method: Qualitative approach with 7 individual semi-structured interviews with adult caregivers in the south and west of the region. Results: Experiences and subjectivities were categorized that express the importance that women attribute to the care of their relatives, with little emotional demonstration during this stage. In addition, categories such as routines and roles emerge, where many women prioritize caregiving; support networks, with frequent reports on the lack of help and tools beyond the economic; and areas of occupation affected, predominantly rest and sleep, although self-care and social participation are also mentioned. Conclusion: Although the process of anticipatory grief generates pain and self-exhaustion, it is informal caregiving that generates changes in the participation and quality of life of women caregivers.

Translation and cross-cultural adaptation of the Posthumous Dignity Therapy Schedule of Questions to Brazilian Portuguese.

OBJECTIVES: Dignity Therapy (DT) is a brief form of psychotherapy that helps people with life-threatening illnesses and their loved ones cope with emotional pain and demoralization. Unfortunately, not everyone has the opportunity to receive DT during their lifetime. Posthumous Dignity Therapy (PDT) was then devised to be administered to bereaved family members. However, PDT has not yet been validated or studied in the specific cultural and linguistic context of Portuguese-Brazilians. This study aims to fill this gap by validating PDT for the Portuguese (Brazilian) context. METHODS: Using Beaton's methodology, including the processes of translation, synthesis, back-translation, evaluation by an expert committee, and pre-testing, the PDT Schedule of Questions underwent validation and cultural adaptation. The research was conducted in a Palliative Care Unit at a tertiary cancer hospital in Brazil. RESULTS: The questionnaire was translated, back-translated, and evaluated by the panel of experts, obtaining a Content Validity Index of 0.97. During the pretest phase, it was observed that the participant's interview method needed to be changed from remote (telephone or videoconference) to in-person. Additionally, it was necessary to modify some terms related to death and dying, as they caused discomfort to the participants. As a result of this process, the PDT was modified, and adapted to the Brazilian cultural and linguistic reality. SIGNIFICANCE OF RESULTS: This validation study will be significant for future DT research from the caregivers' perspective and for projects aiming to implement this therapeutic modality in palliative care units, in addition to helping participants remember their loved ones better by providing a tangible legacy document that assists them emotionally and materially in coping with the grieving process.

Radiofrequency ablation of bilateral splanchnic nerves in a 15-year-old patient with visceral abdominal pain cancer.

Pain, a prevalent and debilitating symptom in cancer patients, significantly diminishes the quality of life for both individuals and their families. Addressing this critical issue, our study presents the case of a 15-year-old diagnosed with synchronous multifocal multicentric osteosarcoma. We utilized radiofrequency ablation of bilateral splanchnic nerves, a strategy of multimodal pain and palliative care. This approach not only proved to be safe and effective but also markedly improved the patient's quality of life. Our findings shine a light of hope, emphasizing the paramount importance of innovative pain management in pediatric oncology, especially in the final stages of life. This case report highlights the unwavering dedication to excellence in relieving suffering, offering hope for patients grappling with cancer.

Pain is a common and serious problem for cancer patients, osteosarcoma is a type of bone cancer that often affects children. making life hard for them and their families. We used a therapy called radiofrequency ablation on specific nerves to manage the pain. In the case of the patient's abdominal pain, this therapy was safe, worked well, and greatly improved the patient's quality of life. Our findings show the importance of new pain management methods in helping children with cancer, helping them reduce pain, using fewer strong pain medications and helping children in this case in the final stage of life.

Fulvestrant en la práctica clínica: análisis de efectividad en pacientes uruguayas con cáncer de mama HR+/HER2. / Fulvestrant in clinical practice: Effectiveness analysis in Uruguayan patients with HR+/HER2- breast cancer.

Introduction: Fulvestrant demonstrated benefits in overall survival and progression-free survival in patients with advanced breast cancer, who are hormone receptor-positive and human epidermal growth factor receptor 2 negative. The characteristics, evolution, and survival of patients with hormone receptor-positive, HER2-negative breast cancer treated with fulvestrant were evaluated according to the national treatment coverage protocols of the National Resources Fund, with the aim of understanding the efficacy of fulvestrant in patients treated in usual clinical practice and comparing our results with those from pivotal studies. Methods: A database from the National Resources Fund covering the period from 2009 to 2022 was used. Survival curves were assessed using the Kaplan-Meier method, and differences were analyzed using the Log-Rank test. Results: A total of 1085 patients with an average age of 63,66 years were included. Following a follow-up of 14 months, the median overall survival was 16 months, and the median progression-free survival was 6 months. The presence of liver and bone metastases was associated with a shorter overall survival. Patients from the public sector and those with a better performance status experienced longer overall survival. Conclusions: Our findings provide a valuable perspective for treatment management in a context of limited resources. Overall survival and progression-free survival were somewhat lower than those reported in pivotal clinical trials. The presence of liver and bone metastases was associated with worse prognosis and survival; additionally, patients with worse performance status had shorter overall survival. These findings underscore the need for personalized therapies, opening new lines of future research.

Introducción: Fulvestrant demostró beneficio en sobrevida global y sobrevida libre de progresión en pacientes con cáncer de mama avanzado, con receptores hormonales positivos y receptor de factor de crecimiento epidérmico humano 2 negativo. Se evaluaron las características, la evolución y la sobrevida de pacientes con cáncer de mama receptor hormonal positivo, HER2 negativo, tratadas con fulvestrant, de acuerdo con los protocolos nacionales de cobertura de tratamiento del Fondo Nacional de Recursos. Su objetivo fue conocer la eficacia de fulvestrant en pacientes tratados en la práctica clínica habitual. Se compararon los resultados obtenidos en el presente trabajo con los resultados de los estudios pivotales. Métodos: Se utilizó la base de datos del Fondo Nacional de Recursos, que abarca el período de 2009 a 2022. La evaluación de las curvas de sobrevida se realizó mediante el método Kaplan-Meier y las diferencias se analizaron utilizando el test de Log-Rank. Resultados: Se incluyeron 1085 pacientes con una edad media de 63,66 años. Tras un seguimiento de 14 meses, la mediana de la sobrevida global fue de 16 meses y la de la sobrevida libre de progresión de 6 meses. La presencia de metástasis hepáticas y óseas se asoció con una menor sobrevida global. Los pacientes del sector público y aquellos con una mejor escala de estado funcional experimentaron una mayor sobrevida global. Conclusiones: Los resultados obtenidos ofrecen una perspectiva valiosa para la gestión de tratamientos en un contexto de recursos limitados. La sobrevida global y la sobrevida libre de progresión fueron algo inferiores a los reportados en los ensayos clínicos pivotales. La presencia de metástasis hepáticas y óseas se asoció a un peor pronóstico y una peor sobrevida. Además, los pacientes con peor escala de estado funcional tuvieron una menor sobrevida global. Estos hallazgos subrayan la necesidad de terapias personalizadas, abriendo nuevas líneas de investigación futura.

Palliative Care and the Self-Fulfilling Prophecy in Stroke Patients: is There Anything to Fear? A Retrospective Study of Patients Who Died During Hospitalization in a Quaternary Care Hospital.

BACKGROUND AND PURPOSE: Primary palliative care (PC) aims to improve the quality of life for patients with acute ischemic stroke but is often misinterpreted as withdrawal of care. The self-fulfilling prophecy withdrawal bias is feared in this context of PC's early implementation. This study evaluates stroke patients who died in the hospital to determine the impact of PC evaluation. METHODS: A retrospective descriptive analysis of patients who died from acute ischemic stroke was conducted. The study included patients aged ≥18 years admitted to the Stroke Unit of a quaternary hospital in Brazil from January 2017 to December 2018. The impact of PC assessment on outcomes was analyzed, with significance set at 5%. RESULTS: Among the patients who died during hospitalization as a result of an ischemic stroke (n = 77), 39 (%) were assessed by the palliative care team. There was no difference in the total length of stay or duration of antibiotic therapy. Logistic regression corrected for significant variables from the univariate analysis revealed that PC evaluation was associated with a 31-fold increase in opioid use (P < 0.001), a nearly 14-fold increase in discharges to the ward, and a threefold reduction in ICU length of stay (P = 0.011). CONCLUSION: PC team involvement was associated with higher rates of discharge to the floors, inferring more time spent with family and increased opioid use, suggesting better symptom control, without reducing the overall length of stay or duration of antibiotic therapy. This underscores that PC does not equate to withdrawal of care.

[Consensus on therapeutic effort limitation, with a palliative care approach]. / Consenso de adecuación de esfuerzo terapéutico con enfoque paliativo.

The National Committee for Palliative Care expressed their commitment to approach the decision of foregoing life sustaining treatment from a palliative care perspective, allowing the implementation of a care program to prevent therapeutic obstinacy, respect the dignity of the patient and their parents, and evaluate a rational, reasonable and adequate use of health and technological resources by focusing on the quality of life of the child, in order to realize their best interest, providing a guide that facilitates the decision-making process in dilemmatic situations in pediatrics.

Desde el Comité Nacional de Cuidados Paliativos surgió la inquietud de aportar una mirada específica a la adecuación del esfuerzo terapéutico que permita implementar un plan de cuidado que prevenga el empecinamiento terapéutico, respete la dignidad del paciente y sus padres, evalúe un uso racional, razonable y adecuado de los recursos sanitarios y tecnológicos, y se focalice en la calidad de vida del niño, en concreción de su interés superior. El objetivo es acercar a los pediatras una guía que facilite el proceso de toma de decisiones en situaciones dilemáticas.

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.

The Use of Antibiotics at the End of Life: A Cross-Sectional Study.

Objective: To identify and analyze antibiotics' prescription patterns and associated factors among terminally ill patients at a hospital in southern Peru. Methodology: A cross-sectional analytical study was conducted on adult patients who died in Hospital III Daniel Alcides Carrion in Tacna, Peru, 2023. Data were collected from electronic medical records, focusing on antibiotic use during the last hospitalization. Univariate, bivariate, and multivariate analyses were performed using Poisson regression to adjust for potential confounders. Results: The study included 239 patients with an average age of 76. Antibiotics were administered to 93.72% of patients, with 42.46% lacking an identified infectious focus. Ceftriaxone, Meropenem, and Vancomycin were the most used antibiotics. A lower use of antibiotics within 72 hours prior to death was associated with hospitalizations longer than 18 days and having 2 or more comorbidities. Conclusion: The high prevalence of antibiotic use at the end of life, often without an infectious focus, suggests a need for better guidelines and education on palliative care to avoid inappropriate antibiotic prescribing. Improved communication between healthcare providers, patients, and families is essential for optimizing end-of-life care.

End-of-Life Costs in Cancer Patients: A Systematic Review.

OBJECTIVES: Identify the costs of an oncology patient at the end of life. METHODS: A systematic literature review was conducted by screening Embase, PubMed and Lilacs databases, including all studies evaluating end-of-life care costs for cancer patients up to March 2024. The review writing followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. The quality of the included studies was assessed using the Drummond checklist. The protocol is available at PROSPERO CRD42023403186. RESULTS: A total of 733 studies were retrieved, and 43 were considered eligible. Among the studies analyzed, 41,86% included all types of neoplasms, 18.60% of lung neoplasm, All articles performed direct cost analysis, and 9.30% also performed indirect cost analysis. No study evaluated intangible costs, and most presented the macrocosting methodology from the payer's perspective. The articles included in this review presented significant heterogeneity related to populations, diagnoses, periods considered for evaluation of end-of-life care, and cost analyses. Most of the studies were from a payer perspective (74,41%) and based on macrocosting methodologies (81,39%), which limit the use of the information to evaluate variabilities in the consumption of resources. CONCLUSIONS: Considering the complexity of end-of-life care and the need for consistent data on costs in this period, new studies, mainly in low- and middle-income countries with approaches to indirect and intangible costs, with a societal perspective, are important for public policies of health in accordance with the trend of transforming value-based care, allowing the health care system to create more value for patients and their families.

Past trends and future projections of palliative care needs in Chile: analysis of routinely available death registry and population data.

BACKGROUND: The number of people with palliative care needs is projected to increase globally. Chile has recently introduced legislation for universal access to palliative care services for patients with severe and terminal illnesses, including non-cancer conditions. We aimed to estimate the number of people affected by serious health-related suffering and need for palliative care in Chile to 2050. METHODS: We used data on all deaths registered in Chile between 1997-2019 and population estimates for 1997-2050. We used Poisson regression to model past trends in causes of death adjusted by age, sex and population estimates, to project the number of deaths for each cause from 2021 to 2050. We applied the Lancet Commission on Palliative Care and Pain Relief weights to these projections to identify decedents and non-decedents with palliative care needs. RESULTS: Population palliative care needs in Chile are projected to increase from 117 (95% CI 114 to 120) thousand people in 2021 to 209 (95% CI 198 to 223) thousand people in 2050, a 79% increase (IRR 1.79; 95% CI 1.78-1.80). This increase will be driven by non-cancer conditions, particularly dementia (IRR 2.9, 95% CI 2.85-2.95) and cardiovascular conditions (IRR 1.86, 95% CI 1.83-1.89). By 2050, 50% of those estimated to need palliative care will be non-decedents (not expected to die within a year). CONCLUSIONS: Chile will experience a large increase in palliative care needs, particularly for people with dementia and other non-cancer conditions. Improved availability of high-quality services, expanded clinician training and new sustainable models of care are urgently required to ensure universal access to palliative care.

[Palliative care in children with severe neurological diseases]. / Cuidados paliativos en niños con enfermedades neurológicas graves.

Pediatric palliative care focuses on improving the quality-of-life in children with severe illnesses and their families, addressing relief of pain and other physical symptoms, as well as emotional, social and spiritual support. Its approach is comprehensive and multidisciplinary. Severe neurological diseases are life-limiting and threatening, significantly affecting the well-being of the child. The families of these children face significant stress and need support to make complex decisions about them. This includes advance care planning, setting therapeutic goals, and end-of-life decisions. Early intervention can improve quality-of-life, reduce unnecessary hospitalizations, and provide emotional support for the family. Coordination between different health services is essential to ensure patient-centered care. Education and training of health professionals in this field are essential to improve the care of these children.

Los cuidados paliativos pediátricos se centran en mejorar la calidad de vida de niños con enfermedades graves y sus familias, abordando el alivio del dolor y otros síntomas físicos, así como brindar apoyo emocional, social y espiritual. Su enfoque es integral y multidisciplinario. Las enfermedades neurológicas graves pueden limitar y amenazar la vida, y afectan significativamente el bienestar del niño. Las familias de estos niños enfrentan un estrés significativo y necesitan apoyo para tomar decisiones complejas sobre el cuidado de su hijo. Esto incluye planificar anticipadamente la atención, establecer objetivos terapéuticos y, eventualmente, decisiones sobre el final de la vida. La intervención temprana puede mejorar la calidad de vida, reducir hospitalizaciones innecesarias y proporcionar un apoyo emocional crucial para la familia. La coordinación entre los diferentes servicios de salud es esencial para asegurar una atención centrada en el paciente. La formación de los profesionales de la salud en este campo es fundamental para mejorar la calidad de atención de estos niños.

Prevalence of oral diseases in patients under palliative care: a systematic review and meta-analysis.

PURPOSE: Oral alterations are frequently observed in patients undergoing palliative care and are linked to the direct or indirect effects of the primary medical condition, comorbidities and medical management, leading to oral pain, impacting oral intake, and affecting quality of life. This systematic review aims to assess the prevalence of oral disease in palliative care patients. METHODS: The protocol was registered at the PROSPERO database, and a systematic review of the literature was performed based on the PRISMA statement. A thorough evaluation of studies from five databases and gray literature was conducted. The risk of bias in each study was assessed using the Joanna Briggs Institute checklist for cross-sectional and case-control studies. A quantitative analysis was conducted on five studies using meta-analysis, and the degree of certainty in the evidence was determined using the GRADE tool. RESULTS: The sample consisted of 2,502 patients, with a slight male predominance (50.43%). The average age was 66.92 years. The prevalence of oral diseases among palliative care patients was as follows: caries 32% (95% CI, 0.11-0.56; I2 = 93%), and oral candidiasis 17% (95% CI,0.11-0.25; I2 = 74%). Gingivitis and stomatitis were also reported, but with less frequency. CONCLUSION: Dental intervention should take place as early as possible, ideally from the time of the patient's initial admission to palliative care, with regular monitoring of oral health. This approach can enhance the patient's comfort and quality of life and help prevent more severe complications in the future.

Cordotomy for pain control and opioid reduction in cancer patients: A cancer center 11-year experience.

BACKGROUND: Percutaneous lateral cervical cordotomy (PLCC) is a treatment option for predominantly nociceptive pain of oncological origin that is refractory to conservative methods, with unilateral distribution, particularly in the lower trunk or lower limbs of patients with a life expectancy of less than one year. OBJECTIVE: The aim of this study was to assess the analgesic efficacy and opioid utilization alteration in patients undergoing PLCC. METHODS: We retrospectively collected data from patients undergoing PLCC between 2011 and 2021 at the AC Camargo Cancer Center in São Paulo, Brazil. RESULTS: Sixty-three patients and their respective surgical outcomes were analyzed. The mean preoperative pain intensity, as assessed by the mean numerical rating scale (NRS), was 8.4 (range: 4-10), while postoperatively, it decreased to 0.78 (range: 0-8). Lower postoperative NRS scores were observed for pain in the lower limbs and abdomen compared to the lower thorax. The mean preoperative oral morphine equivalent (OME) consumption was 231.0 mg (range: 30.0-1015.2). At 30 days postoperative, the mean consumption of OME was 120.2 mg (range: 0.0-705.0). Twelve months after surgery, the average consumption of OME was 98.3 mg (range: 0.0-396.0). CONCLUSION: PLCC is a valuable therapeutic intervention for patients experiencing cancer pain that is unresponsive to conservative treatments. The anticipated analgesic outcomes are generally favorable, particularly in cases where the pain is localized unilaterally in the abdomen or lower body segments.

Spiritual care interventions for palliative care patients: A scoping review.

OBJECTIVES: To identify and map spiritual care interventions to address spiritual needs and alleviate suffering of patients in the context of palliative care. METHODS: A scoping review using the PRISMA ScR (Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews) checklist was conducted according to the JBI (Joanna Briggs Institute) guidelines. The search was conducted from October 2022 to January 2023 using 9 electronic databases and gray literature. Studies on spiritual care interventions in palliative care were included. Disagreements between the 2 reviewers were resolved by discussion or a third reviewer. RESULTS: A total of 47 studies were included in this review. All selected articles were published between 2003 and 2022. In total, 8 types of spiritual care interventions were identified to assess spiritual needs and/or alleviate suffering: conversations between the patient and a team member, religious practice interventions, therapeutic presence, guided music therapy, multidisciplinary interventions, guided meditation, art therapy, and combined interventions with multiple components such as music, art, integrative therapy, and reflection. SIGNIFICANCE OF RESULTS: Our study identified few spiritual care interventions in palliative care worldwide. Although this review noted a gradual increase in studies, there is a need to improve the reporting quality of spiritual care interventions, so they can be replicated in other contexts. The different interventions identified in this review can be a contribution to palliative care teams as they provide a basis for what is currently being done internationally to alleviate suffering in palliative care and what can be improved. No patient or public contribution was required to design or undertake this methodological research.

'Someone must do it': multiple views on family's role in end-of-life care - an international qualitative study.

Background: Family is a crucial social institution in end-of-life care. Family caregivers are encouraged to take on more responsibility at different times during the illness, providing personal and medical care. Unpaid work can be overburdening, with women often spending more time in care work than men. Objectives: This study explored multiple views on the family's role in end-of-life care from a critical perspective and a relational autonomy lens, considering gender in a socio-cultural context and applying a relational autonomy framework. It explored patients, relatives and healthcare providers' points of view. Design: This qualitative study was part of the iLIVE project, involving patients with incurable diseases, their relatives and health carers from hospital and non-hospital sites. Methods: Individual interviews of at least five patients, five relatives and five healthcare providers in each of the 10 participating countries using a semi-structured interview guide based on Giger-Davidhizar-Haff's model for cultural assessment in end-of-life care. Thematic analysis was performed initially within each country and across the complete dataset. Data sources, including researchers' field notes, were translated into English for international collaborative analysis. Results: We conducted 158 interviews (57 patients, 48 relatives and 53 healthcare providers). After collaborative analysis, five themes were identified across the countries: family as a finite care resource, families' active role in decision-making, open communication with the family, care burden and socio-cultural mandates. Families were crucial for providing informal care during severe illness, often acting as the only resource. Patients acknowledged the strain on carers, leading to a conceptual model highlighting socio-cultural influences, relational autonomy, care burden and feminisation of care. Conclusion: Society, health teams and family systems still need to better support the role of family caregivers described across countries. The model implies that family roles in end-of-life care balance relational autonomy with socio-cultural values. Real-world end-of-life scenarios do not occur in a wholly individualistic, closed-off atmosphere but in an interpersonal setting. Gender is often prominent, but normative ideas influence the decisions and actions of all involved.

Palliative care and COVID-19: acknowledging past mistakes to forge a better future.

Context: COVID-19 induces complex distress across physical, psychological, and social realms and palliative care (PC) has the potential to mitigate this suffering significantly. Objectives: To describe the clinical characteristics and outcomes of COVID-19 patients with an indication of PC, compared to patients who had no indication, in different pandemic waves. Methods: This retrospective multicenter observational cohort included patients from 40 hospitals, admitted from March 2020 to August 2022. Patients who had an indication of palliative care (PC) described in their medical records were included in the palliative care group (PCG), while those who had no such indication in their medical records were allocated to the non-palliative care group (NPCG). Results: Out of 21,158 patients, only 6.7% had indication for PC registered in their medical records. The PCG was older, had a higher frequency of comorbidities, exhibited higher frailty, and had a higher prevalence of clinical complications and mortality (81.4% vs. 17.7%, p < 0.001), when compared to the NPCG. Regarding artificial life support, the PCG had a higher frequency of dialysis (20.4% vs. 10.1%, p < 0.001), invasive mechanical ventilation (48.2% vs. 26.0%, p < 0.001) and admission to the intensive care unit (53.6% vs. 35.4%, p < 0.001). These differences were consistent across all three waves. Conclusion: A low proportion of patients received PC. Patients in PCG were more fragile, had more clinical complications, and had a higher mortality. On the contrary to our expectations, they received more artificial life support in all three waves. Taken together, these findings suggest that decisions regarding PC indication were made too late, within a context of end-of-life and therapeutic failure.

Management of Infections in Palliative Care Patients at the End-of-Life and Active Process of Death: A Brazilian Retrospective Study.

Background: There is a lack of specific studies on the management of infections in patients receiving palliative care (PC) in the final stages of life and during the active process of death, related to specific nursing care. There is clinical and social importance as patients in PC represent a vulnerable population, and adequate management of infections is crucial to improve quality of life and the experience of comfort. Objective: This study analyzed how infections are managed in patients undergoing PC at the end-of-life and in the active process of death in two hospital health services. Design: This is an observational, analytical, and retrospective study. Settings: Data collection took place in two hospitals that assist individuals who are hospitalized under PC, located in Brazil, in a city in the interior of the state of São Paulo. Measurements and Results: The sample consisted of 113 medical records, in which the oncological diagnosis was the most prevalent. There was a predominance of infection diagnoses based on the patient's clinical symptoms, the main focus being the pulmonary, in individuals at the end-of-life. The management of infection in the study sample occurred through care and procedures that generate physical discomfort, however aiming at relieving symptoms. Such findings must be documented, as they invite us to reflect on our practical attitudes and what it means to be comfortable for these people, making it possible to incorporate this information into the design of interventions focused on enhancing the experience of comfort.