Developing research priorities for palliative care in Colombia: a priority setting partnership approach.

BACKGROUND: A recent Lancet commission called for more research on palliative care in low- and middle-income (LMIC) countries such as Colombia. A research priority setting approach has been recommended by The Global Forum for Health Research to address the huge gap in research output between LMIC and high-income countries, with influential health service bodies recommending the active involvement of non-research expert stakeholders in establishing research priorities to address service user needs. METHOD: Priority setting partnership (PSP) following the four stages of the James Lind Alliance methodology; establishing the partnership, identifying evidence uncertainties, refining questions and uncertainties, and prioritization. Data from MS forms were analysed using descriptive statistics. RESULTS: A total of 33 stakeholders attended an online PSP workshop and completed the Mentimeter exercise in Microsoft Teams. A total of 48 attended the subsequent in person prioritisation exercise in urban Bogota (n = 22) and rural Popayan (n = 25). The stakeholders were a diverse group of health professionals (physicians, medical students, nurses, dentists, physiotherapists, nutritionist, occupational and speech therapists), financial and administrative staff and patients with life-limiting illness and caregivers. Top research priorities included patient and caregiver needs, service provider education and training, and better integration of palliative care with cancer and non-cancer services. The key challenges included a lack of interest in palliative care research, along with funding, time and resource constraints. Key solutions included collaboration across disciplines and settings, highlighting benefits of palliative research to help secure adequate resources, and multicentre, mixed method research, with patient involvement from the research development stage. CONCLUSION: The findings of this PSP should be disseminated among palliative care associations worldwide to inform international multicentre studies, and among governmental and nongovernmental organisations that promote research in Colombia. A focus on patient and family caregiver palliative care needs in Colombia should be prioritised.

Cuidados paliativos aplicados em idosos no domicílio / Palliative care applied to the elderly at home / Cuidados paliativos aplicados a ancianos en el hogar

Objetivo: analisar evidências científicas sobre a utilização de cuidados paliativos aplicados em idosos no domicílio. Métodos: trata-se de uma revisão sistemática de literatura, realizada em janeiro de 2020, utilizando os descritores: "cuidados paliativos/Paliative care" AND "saúde do idoso/heal thof the elderly" AND "assistência domiciliar/home care". Resultados: foram selecionados sete artigos, que emergiram as categorias: Assistência domiciliar adaptada as necessidades dos pacientes de acordo com seus recursos disponíveis; Ampliação dos resultados através do empoderamento e autonomia na participação do cuidado familiar no domicílio; Os cuidados paliativos contribuem para a melhoria dos fatores psicológicos e emocionais, enfrentamento positivo e aceitação do tratamento. Conclusão: a literatura traz uma aplicabilidade geral sem estudos que tratem de forma específica a situação do idoso. Demonstra também um aumento deliberado da necessidade de assistência permanente a estas pessoas com doenças incuráveis, necessitando de apoio holístico

Objective: to analyze scientific evidence on the use of palliative care applied to elderly people at home. Methods: this is a systematic literature review, conducted in January 2020, using the descriptors: "palliative care / Palliative care" AND "health of the elderly / heal thof the elderly" AND "home care / home care". Results: seven articles were selected, which emerged in the categories: Home care adapted to the needs of patients according to their available resources; Expansion of results through empowerment and autonomy in the participation of family care at home; Palliative care contributes to the improvement of psychological and emotional factors, positive coping and treatment acceptance. Conclusion: the literature has a general applicability without studies that specifically address the situation of the elderly. It also demonstrates a delibeate increase in the need for permanent assistance to these people with incurable diseases, requiring holistic support

Objetivo: analizar la evidencia científica sobre el uso de cuidados paliativos aplicados a personas mayores en el hogar. Métodos: esta es una revisión sistemática de la literatura, realizada en enero de 2020, utilizando los descriptores: "cuidados paliativos / cuidados paliativos" Y "salud de los ancianos / curar a los ancianos" Y "cuidado en el hogar / cuidado en el hogar". Resultados: se seleccionaron siete artículos, que surgieron en las categorías: Atención domiciliaria adaptada a las necesidades de los pacientes de acuerdo con sus recursos disponibles; Expansión de resultados a través del empoderamiento y la autonomía en la participación del cuidado familiar en el hogar; Los cuidados paliativos contribuyen a la mejora de los factores psicológicos y emocionales, el afrontamiento positivo y la aceptación del tratamiento. Conclusión: la literatura tiene una aplicabilidad general sin estudios que aborden específicamente la situación de las personas mayores. También demuestra un aumento deliberado en la necesidad de asistencia permanente a estas personas con enfermedades incurables, que requieren un apoyo integral

Análise da evolução histórica do conceito de cuidados paliativos: revisão de escopo / Análisis de la evolución histórica del concepto de cuidados paliativos: revisión de alcance / Analysis of the historical evolution of the concept of palliative care: a scoping review

Resumo Objetivo Analisar a evolução histórica do conceito de cuidados paliativos e identificar seus elementos essenciais. Métodos Revisão de escopo fundamentada no manual do Joanna Briggs Institute Reviewer's que incluiu as definições de cuidados paliativos oriundos de artigos científicos selecionados de bases e portais da saúde. Foram selecionados 21 estudos para análise. Utilizou-se o software IRaMuTeQ® para agrupamento dos dados. Resultados De 1993 a 2020 a definição de cuidados paliativos mais citada foi a da World Health Organization; a abordagem paliativa foi implementada nas esferas físicas, biopsicossociais e espirituais, a pacientes com enfermidades agudas ou crônicas para promover conforto, dignidade e qualidade de vida. Os elementos essenciais identificados nas definições foram: vida, cuidado, qualidade, família, equipe multidisciplinar, conforto e alívio. Conclusão Constatou-se amadurecimento na definição de cuidados paliativos, ao agregar elementos para garantia de qualidade de vida digna, independentemente do tipo de doença, e integrar família e equipe interprofissional nesse processo.

Resumen Objetivo Analizar la evolución histórica del concepto de cuidados paliativos e identificar sus elementos esenciales. Métodos Revisión de alcance fundamentada en el manual del Joanna Briggs Institute Reviewer's que incluyó las definiciones de cuidados paliativos provenientes de artículos científicos seleccionados de bases y portales de salud. Se seleccionaron 21 estudios para el análisis. Se utilizó el software IRaMuTeQ® para la agrupación de datos. Resultados De 1993 a 2020 la definición de cuidados paliativos más citada fue la de la World Health Organization. El enfoque paliativo fue implementado en la esfera física, biopsicosocial y espiritual a pacientes con enfermedades agudas o crónicas para promover bienestar, dignidad y calidad de vida. Los elementos esenciales identificados en las definiciones fueron: vida, cuidado, calidad, familia, equipo multidisciplinario, bienestar y alivio. Conclusión Se constató la maduración de la definición de cuidados paliativos al agregar elementos para garantizar la calidad de vida digna, independientemente del tipo de enfermedad, e integrar la familia y el equipo interprofesional en ese proceso.

Abstract Objective To analyze the historical evolution of the concept of palliative care and identify its essential elements. Methods This is a scope review based on the Joanna Briggs Institute Reviewer's manual, which included the definitions of palliative care from scientific articles selected from health databases and portals. Twenty-one studies were selected for analysis. The IRaMuTeQ® software was used to group the data. Results From 1993 to 2020, the most cited definition of palliative care was that of the World Health Organization. The palliative approach was implemented in the physical, biopsychosocial and spiritual spheres for patients with acute or chronic illnesses to promote comfort, dignity and quality of life. The essential elements identified in the definitions were life, care, quality, family, multidisciplinary team, comfort, and relief. Conclusion It was found that the definition of palliative care has matured, by adding elements to guarantee a dignified quality of life, regardless of type of disease, and integrating family and interprofessional team in this process.

Advancing pediatric palliative care in a low-middle income country: an implementation study, a challenging but not impossible task.

BACKGROUND: The disparities in access to pediatric palliative care and pain management in Latin America remains an unaddressed global health issue. Efforts to improve the development of Palliative Care (PC) provision have traditionally targeted services for adults, leaving the pediatric population unaddressed. Examples of such services are scarce and should be portrayed in scientific literature to inform decision-makers and service providers on models of care available to tackle the burden of Pediatric Palliative Care (PPC) in Low-and middle-income countries (LMIC). The purpose of this study is to describe the implementation of a pediatric palliative care program, "Taking Care of You" (TCY), in a tertiary care, university hospital in Cali, Colombia. METHODS: A program's database was built with children between 0 to 18 years old and their families, from year 2017 to 2019. Descriptive analysis was carried out to evaluate the impact of the program and service delivery. A theory-based method was directed to describe the PPC program, according to the implementation of self-designed taxonomy, mapping theoretical levels and domains. Clinical outcomes in patients were included in the analysis. RESULTS: Since 2017 the program has provided PPC services to 1.965 children. Most of them had an oncologic diagnosis and were referred from hospitalization services (53%). The number of ambulatory patients increased by 80% every trimester between 2017 and 2018. A 50% increase was reported in hospitalization, emergency, and intensive care units during the same time period. CONCLUSIONS: The program addressed a gap in the provision of PPC to children in Cali. It shows effective strategies used to implement a PPC program and how the referral times, coordination of care, communication with other hospital services were improved while providing compassionate/holistic care to children with life-limiting and threatening diseases and in end-of-life. The implementation of this program has required the onset of specific strategies and arrangements to promote awareness and education proving it a hard task, yet not impossible.

Spirituality alleviates the burden on family members caring for patients receiving palliative care exclusively.

BACKGROUND: Spirituality can give meaning to life, providing support and guidance in complex situations. Despite its importance in palliative care, the role of spirituality for family caregivers of patients under exclusive palliative care has not received enough attention in the literature. We aimed to address the correlation between spirituality and the emotional burden of family members of patients under exclusive palliative care. METHODS: This transversal study was conducted in a tertiary private teaching hospital, in São Paulo, Brazil. The study comprised family members of patients receiving palliative care exclusively. Only one caregiver who cared for the patient for at least 2 months was invited to participate. Family members answered the following questionnaires: WHOQOL spirituality, religiousness and personal beliefs (SRPB), Zarit Burden Interview (ZBI) and Self-Reporting Questionnaire (SRQ-20). They were excluded if patients were residing in a Long Stay Institution. Continuous variables were expressed by median and quartiles and analyzed with the Kruskal-Wallis test with Muller-Dunn post-test adjusted by Bonferroni or with the Mann-Whitney test for two groups. We used multivariable linear regression to identify independent predictors of caregiver burden. RESULTS: A total of 178 family members were interviewed in a median of 8 [4-13.25] days after patient admission. Almost 40% of families presented high score of burden. Faith and Meaning in Life were the facets that scored the highest, with a median of 4.50 [4.00-5.00] for both facets. There was an inverse correlation between Zarit score and all of the WHOQOL-SRPB facets, indicating that the lower the spirituality, the greater the emotional burden. Inner peace was the strongest protective factor associated with burden. CONCLUSIONS: Psycho-socio-spiritual interaction can improve the coping ability of family caregivers of patients under exclusive palliative care, addressing a critical gap in the provision of holistic palliative care services.

Produção científica em cuidados paliativos e terapia ocupacional: revisão de escopo / Scientific production in palliative care and occupational therapy: a scoping review / Producción científica en cuidados paliativos y terapia ocupacional: revisión de alcance

Objective: The study's main purpose has been to characterize the scientific production addressing palliative care and occupational therapy published in peer-reviewed open access journals available online, as well as identify the approaches used by such publications selected for this work. Methods: This is a scoping review, which performed a thorough search in the following databases: MEDLINE, LILACS, IBECS and INDEX PSI. Furthermore, it considered articles published over the period from 2000 to July 2019, eventually obtaining a sample of 29 studies. Results: The analysis resulted in six categories that addressed subjects on the profile, role, interventions, difficulties, information technology and home care of the occupational therapy in palliative care, where a predominance of English written articles was observed. Conclusion: The study findings have revealed rather small evidences on the occupational therapists' profile and their big challenges - such as updates related to the current practice and the educational curriculum. Hence, it is essential to promote new investigations aimed at demonstrating the effectiveness of interventions focused on improving the occupational therapists' performance and the patient's quality of life

Objetivo: Caracterizar a produção científica sobre os cuidados paliativos e a terapia ocupacional publicada em periódicos online, e identificar os enfoques abordados nas publicações selecionadas para o estudo. Método: Trata-se de uma revisão de escopo, cuja pesquisa foi realizada nas bases de dados MEDLINE, LILACS, IBECS e INDEX PSI, em artigos publicados entre 2000 e julho de 2019, cujas amostras contemplaram 29 estudos. Resultado: Da análise, resultaram seis categorias que contemplam temas sobre o perfil, papel, intervenções, dificuldades, tecnologia da informação e atenção domiciliar da terapia ocupacional em cuidados paliativos, com predominância de artigos em inglês. Conclusão: Os achados desta pesquisa revelam poucas evidências sobre o perfil dos terapeutas ocupacionais e grandes desafios ­ como atualizações na prática atual e no currículo educacional, sendo fundamental o desenvolvimento de novas pesquisas voltadas a demonstrar a eficácia das intervenções, à melhoria do desempenho ocupacional e à qualidade de vida do paciente

Objetivo: Caracterizar la producción científica sobre los cuidados paliativos y la terapia ocupacional publicada en periódicos online y identificar las perspectivas abordadas en las publicaciones seleccionadas para el estudio. Método: Se trata de una revisión de alcance, cuya investigación fue realizada en las bases de datos MEDLINE, LILACS, IBECS y INDEX PSI, en artículos publicados entre 2000 y julio de 2019, de cuales las muestras contemplaron 29 estudios. Resultado: Del análisis, resultaron seis categorías que contemplan temas sobre el perfil, papel, intervenciones, dificultades, tecnología de la información y atención domiciliar de la terapia ocupacional en cuidados paliativos, con predominancia de artículos en inglés. Conclusión: Los hallados de esta investigación revelan pocas evidencias sobre el perfil de los terapeutas ocupacionales y grandes desafíos ­ como actualizaciones en la práctica actual y en el currículo educacional, siendo fundamental el desarrollo de nuevas pesquisas destinadas a demostrar la eficacia de las intervenciones dirigidas a la mejoría del desempeño ocupacional y a la calidad de vida del paciente

Perception of health professionals about neonatal palliative care / La percepción de los profesionales de la salud sobre los cuidados paliativos neonatales / Perceção dos profissionais de saúde sobre os cuidados paliativos neonatais

ABSTRACT Objective: To identify the perception of health professionals about neonatal palliative care. Method: A phenomenological qualitative study, a non-probabilistic sample, of 15 health professionals from a neonatal intensive care unit in northern Portugal. Content analysis was performed. Results: Despite their lack of training in palliative care, the health professionals showed concern for the dignity, quality of life and comfort of the newborn and family. They expressed emotional and relational difficulties in following the trajectories of serious illness and death and in the ethical decisions regarding the end-of-life. Conclusion: It is emphasized that professionals are sensitive to pain and suffering and reveal dedicated and committed in the care of the newborn and family. They are available to train and embrace the current challenges posed by the constitution of pediatric palliative care teams and to help achieve an organizational culture that advances in such care.

RESUMEN Objetivo: Identificar la percepción de los profesionales del equipa de la salud sobre los cuidados paliativos neonatales. Método: Estudio cualitativo fenomenológico, muestra no probabilística de 15 profesionales de la salud de una unidad neonatal del norte de Portugal. Se realizó análisis de contenido. Resultados: A pesar de la falta de formación en cuidados paliativos, los profesionales revelaron preocupación por la dignidad, calidad de vida y confort del recién nacido y su familia. Expresaron dificultades emocionales y relacionales para acompañar las trayectorias de la enfermedad severa y de la muerte y para lidiar con la decisión ética. Conclusión: Debemos destacar que los profesionales son sensibles al dolor, sufrimiento y se muestran dedicados y comprometidos en el cuidado del recién nacido y la familia. Están disponibles para participar en formación y abrazar los desafíos actuales que pasan por la constitución de equipos de cuidados paliativos pediátricos y por lograr una cultura organizacional que permita el progreso de esos cuidados.

RESUMO Objetivo: Identificar a percepção dos profissionais da equipa de saúde sobre os cuidados paliativos neonatais. Método: Estudo qualitativo fenomenológico, amostra não probabilística de 15 profissionais da equipa de saúde de uma unidade de cuidados intensivos neonatal, do norte de Portugal. Realizou-se análise de conteúdo. Resultados: Apesar da falta de formação em cuidados paliativos, os profissionais revelaram preocupação com a dignidade, qualidade de vida e conforto do recém-nascido e família. Expressaram dificuldades emocionais e relacionais no acompanhar as trajetórias de doença grave e morte e a nível da decisão ética no final de vida. Conclusão: Salientamos que os profissionais estão sensíveis à dor e sofrimento e mostram-se dedicados e comprometidos no cuidar do recém-nascido e família. Mostram-se disponíveis para fazer formação e abraçar os desafios atuais que passam pela constituição de equipas de cuidados paliativos pediátricos e o alcançar de uma cultura organizacional que progrida nesses cuidados.

Perception of health professionals about neonatal palliative care.

OBJECTIVE: To identify the perception of health professionals about neonatal palliative care. METHOD: A phenomenological qualitative study, a non-probabilistic sample, of 15 health professionals from a neonatal intensive care unit in northern Portugal. Content analysis was performed. RESULTS: Despite their lack of training in palliative care, the health professionals showed concern for the dignity, quality of life and comfort of the newborn and family. They expressed emotional and relational difficulties in following the trajectories of serious illness and death and in the ethical decisions regarding the end-of-life. CONCLUSION: It is emphasized that professionals are sensitive to pain and suffering and reveal dedicated and committed in the care of the newborn and family. They are available to train and embrace the current challenges posed by the constitution of pediatric palliative care teams and to help achieve an organizational culture that advances in such care.

Palliative care in Brasil: present and future.

OBJECTIVE: To estimate the human resources and services needed to meet the demand of the Brazilian population who would benefit from palliative care, based on the population growth projection for 2040. METHODS: Population and mortality estimates and projections were obtained from the Brazilian Institute of Geography and Statistics. Service needs were estimated based on literature data. RESULTS: The expected increase in the Brazilian population for 2000-2040 is 31.5%. The minimum estimate of patients with palliative care needs was 662,065 in 2000 and 1,166,279 in 2040. The staff required for each hundred thousand inhabitants would increase from 1,734 to 2,282, the number of doctors needed would increase from 4,470 to 6,274, and the number of nurses from 8,586 to 11,294, for the same period. CONCLUSION: The definition of a national strategy predicting the increasing palliative care needs of the population is necessary. The expansion of the support network for chronic and non-transmissible diseases is necessary, but the training of existing human resources at all levels of attention to perform palliative actions can be a feasible alternative to minimize the suffering of the population.

Palliative care in Brasil: present and future

SUMMARY OBJECTIVE: To estimate the human resources and services needed to meet the demand of the Brazilian population who would benefit from palliative care, based on the population growth projection for 2040. METHODS: Population and mortality estimates and projections were obtained from the Brazilian Institute of Geography and Statistics. Service needs were estimated based on literature data. RESULTS: The expected increase in the Brazilian population for 2000-2040 is 31.5%. The minimum estimate of patients with palliative care needs was 662,065 in 2000 and 1,166,279 in 2040. The staff required for each hundred thousand inhabitants would increase from 1,734 to 2,282, the number of doctors needed would increase from 4,470 to 6,274, and the number of nurses from 8,586 to 11,294, for the same period. CONCLUSION: The definition of a national strategy predicting the increasing palliative care needs of the population is necessary. The expansion of the support network for chronic and non-transmissible diseases is necessary, but the training of existing human resources at all levels of attention to perform palliative actions can be a feasible alternative to minimize the suffering of the population.

RESUMO OBJETIVO: Estimar as necessidades de recursos humanos e serviços necessários para o atendimento de pacientes que se beneficiariam de cuidados paliativos a partir da projeção de crescimento da população brasileira até 2040. MÉTODO: As estimativas e projeções populacionais e de mortalidade foram obtidas nos dados do Instituto Brasileiro de Geografia e Estatística e do Sistema Único de Saúde. As estimativas de estrutura de serviços e recursos humanos foram realizadas a partir de dados da literatura. RESULTADOS: A expectativa de aumento da população brasileira entre 2000 e 2040 é de 31,5%. A estimativa mínima de pacientes com necessidades de cuidados paliativos foi de 662.065 em 2000 e é de 1.166.279 em 2040. O número de equipes necessárias para cada 100 mil habitantes passaria de 1.734 para 2.282 no mesmo período; o número de médicos foi de 4.770 para 6.274 e o número de enfermeiros necessários para atender as demandas dessa população foi de 8.586 para 11.294 nesse espaço de tempo. CONCLUSÃO: A definição de uma estratégia nacional prevendo a necessidade de cuidados crescentes da população se torna necessária. A expansão da rede de assistência a doenças crônicas e não transmissíveis se mostra necessária, porém a capacitação de recursos humanos já existentes em todos os níveis de atenção para desempenhar ações paliativas pode ser uma alternativa factível para minimizar o sofrimento da população.

Operation of a hospital palliative care service: a fourth-generation evaluation.

OBJECTIVE: Qualitatively evaluate the operation of a palliative care service in oncology. METHODOLOGY: Qualitative study conducted in a service in southern Brazil based on a fourth generation evaluation. Between September 2014 and June 2015, 460 hours of operation were observed, and 45 semi-structured interviews and five negotiation meetings were conducted; data were analyzed using the constant comparative method. RESULTS: Potential services are: provision of outpatient palliative care, home and inpatient care provided by a multidisciplinary and support team, meeting the patient's biological, psychological, social and spiritual needs. Study limitations: ineffective communication between clinical and surgical oncology and palliative care sectors, lack of specialized training for professionals and in interpersonal relationship issues among team members. FINAL CONSIDERATION: For palliative care progress in the service, some arrangements are required to enhance integrality of care.

Operation of a hospital palliative care service: a fourth-generation evaluation / El desempeño de un servicio de cuidados paliativos hospitalarios: una evaluación de cuarta generación / Atuação de um serviço de cuidados paliativo hospitalar: avaliação de quarta geração

ABSTRACT Objective: Qualitatively evaluate the operation of a palliative care service in oncology. Methodology: Qualitative study conducted in a service in southern Brazil based on a fourth generation evaluation. Between September 2014 and June 2015, 460 hours of operation were observed, and 45 semi-structured interviews and five negotiation meetings were conducted; data were analyzed using the constant comparative method. Results: Potential services are: provision of outpatient palliative care, home and inpatient care provided by a multidisciplinary and support team, meeting the patient's biological, psychological, social and spiritual needs. Study limitations: ineffective communication between clinical and surgical oncology and palliative care sectors, lack of specialized training for professionals and in interpersonal relationship issues among team members. Final Consideration: For palliative care progress in the service, some arrangements are required to enhance integrality of care.

RESUMEN Objetivo: Evaluar cualitativamente el desempeño de un Servicio de Cuidados Paliativos oncológico. Método: Estudio de tipo cualitativo, realizado en un servicio en la región Sur de Brasil, adoptando como referencial metodológico la evaluación de cuarta generación. Entre septiembre de 2014 y junio de 2015 se realizaron 460 horas de observación, 45 entrevistas semiestructuradas y 5 encuentros de negociación, y se analizó los datos por el método comparativo constante. Resultados: Se caracteriza el servicio por: ofrecer cuidados paliativos de tipo ambulatorio, domiciliario y de hospitalización, realizado por un personal multidisciplinario y de apoyo, lo que permite asistir a las necesidades biológicas, psicológicas, sociales y espirituales del paciente-familia. Como limitaciones se presentan: la comunicación ineficaz entre los sectores de oncología clínica/quirúrgica y de cuidados paliativos; la falta de formación especializada de los profesionales; y la dificultad en las relaciones interpersonales entre los integrantes del personal. Consideraciones Finales: Para que avancen los cuidados paliativos en el servicio, son necesarios algunos ajustes que favorezca una atención integral.

RESUMO Objetivo: Avaliar qualitativamente a atuação de um Serviço de Cuidados Paliativos oncológico. Método: Estudo de abordagem qualitativa realizado em um serviço no sul do Brasil, adotando como referencial metodológico a avaliação de quarta geração. Entre setembro de 2014 e junho de 2015 foram realizadas 460 horas de observação, 45 entrevistas semiestruturadas e cinco encontros de negociação e os dados analisados com o método comparativo constante. Resultados: Constituem potencialidades do serviço: oferta de cuidados paliativos na modalidade ambulatorial, domiciliar e internamento, prestada por equipe multidisciplinar e de apoio, o que permite atendimento às necessidades biológicas, psicológicas, sociais e espirituais do paciente-família. As limitações são: comunicação ineficaz entre setor de oncologia clínica/cirúrgica e de cuidados paliativos, falta de formação especializada dos profissionais e dificuldade nas relações interpessoais entre os integrantes da equipe. Considerações Finais: Para o avanço dos cuidados paliativos no serviço, fazem-se necessários alguns arranjos que potencializem a integralidade no atendimento.

Trends in Health-Care Utilization at the End of Life Among Patients With Hematologic Malignancies in a Middle-Income Country: Challenges and Opportunities in Brazil.

Patients with hematologic malignancies (HMs) often receive poor-quality end-of-life care. This study aimed to identify trends in end-of-life care among patients with HM in Brazil. We conducted a retrospective cohort study (2015-2018) of patients who died with HM, using electronic medical records linked to health insurance databank, to evaluate outcomes consistent with health-care resource utilization at the end of life. Among 111 patients with HM, in the last 30 days of life, we found high rates of emergency department visits (67%, n = 75), intensive care unit admissions (56%, n = 62), acute renal replacement therapy (10%, n = 11), blood transfusions (45%, n = 50), and medical imaging utilization (59%, n = 66). Patients received an average of 13 days of inpatient care and the majority of them died in the hospital (53%, n = 58). We also found that almost 40% of patients (38%, n = 42) used chemotherapy in the last 14 days of life. These patients were more likely to be male (64% vs 22%; P < .001), to receive blood transfusions (57% vs 38%; P = .05), and to die in the hospital (76% vs 39%; P = .009) than patients who did not use chemotherapy in the last 14 days of life. This study suggests that patients with HM have high rates of health-care utilization at the end of life in Brazil. Patients who used chemotherapy in the last 14 days of life were more likely to receive blood transfusions and to die in the hospital.

Current Knowledge, Barriers to Implementation, and Future Directions in Palliative Care for End-Stage Liver Disease.

End-stage liver disease (ESLD) is associated with a high degree of morbidity and mortality as well as symptom burden. Despite this, the rate of consultation with palliative care (PC) providers remains low, and invasive procedures near the end of life are commonplace. Studies show that involvement of PC providers improves patient satisfaction, and evidence from other chronic diseases demonstrates reduced costs of care and potentially increased survival. Better integration of PC is imperative but hindered by patient and provider misconceptions about its role in the care of patients with ESLD, specifically among candidates for liver transplantation. Additionally, reimbursement barriers and lack of provider knowledge may contribute to PC underutilization. In this review, we discuss the benefits of PC in ESLD, the variability of its delivery, and key stakeholders' perceptions about its use. Additionally, we identify barriers to more widespread PC adoption and highlight areas for future research.

Changes in the Care Setting of First Consults to Palliative and Supportive Care Over a Seven-Year Period.

CONTEXT: Optimal benefits from palliative care (PC) are achieved when first consults (PC1) occur early, in the outpatient setting. Late PC1, like those in the intensive care unit (ICU), limit these benefits. OBJECTIVES: The objective of this study was to determine the proportion of PC1 over time in the outpatient, ICU, and inpatient non-ICU settings. We also examined patients' baseline characteristics and the timing of PC access (from PC1 to death) by the setting of PC1. METHODS: We retrospectively evaluated consecutive cancer patients' records at our cancer center to ascertain the annual number of PC1 and its distribution across settings (2011-2017). ICU PC1 (n = 309) and a random sample of an equal number of outpatient and inpatient non-ICU PC1 were reviewed to retrieve patients' characteristics and death date. RESULTS: PC1 total annual number increased by 58% from 2011 (n = 2286) to 2017 (n = 3615). We found a significant decrease in the proportion of ICU PC1 (from 2.3% in 2011 to 1% in 2017, P < 0.001). There were no significant changes in the proportion of PC1 at outpatient versus inpatient settings (P = 0.2). Hematologic cancer patients were more likely to have an ICU PC1 (P < 0.001). Median survival (months) was 7.7 (6.3-9.7), 3.4 (2.4-4.5), and 0.1 (0.1-0.1) for outpatient, inpatient, and ICU, respectively (P < 0.01). CONCLUSION: PC1 total annual number has increased, and the proportion of PC1 at ICU, a very late clinical setting, is decreasing. Further efforts are needed to integrate PC in hematologic cancer care.

Construcción de espacios grupales terapéuticos en el ámbito de la internación: relato de experiencia en una unidad de mediana estancia de la ciudad autónoma de Buenos Aires / Construction of therapeutic group spaces in the field of hospitalization: experience report in a medium-stay unit of the city autonomous of Buenos Aires

Este relato de experiencia describe el desarrollo de un dispositivo grupal de socialización en el abordaje de pacientes complejos en rehabilitación a partir del año 2016 en una Unidad de Mediana Estancia (UME) del Hospital Italiano de Buenos Aires. Se partió de reconocer la posibilidad de trabajar en el marco de la psicología social de Pichon-Rivière adaptando la técnica del grupo operativo para ámbitos hospitalarios que generan alto nivel de estrés, desfuncionalización y disrupción de la vida cotidiana. En este relato describimos la conformación, en esta UME, de grupos operativos terapéuticos de pacientes con deterioro físico, cognitivo o en cuidados paliativos. La metodología para el análisis de esta experiencia se basó en el registro prospectivo narrativo de cada encuentro grupal. Presentamos una reflexión teórica sobre las adaptaciones al encuadre y a la planificación de cada actividad grupal, para lograr continuidad y pertenencia grupal, en los grupos operativos desarrollados en este tipo de contexto hospitalario. (AU)

This experience report describes the development of a socialization group device in the approach of complex patients in rehabilitation from 2016 on a Medium-Stay Unit (MSU) of the Hospital Italiano de Buenos Aires. It started by recognizing the possibility of working within the social psychology framework of Pichon-Rivière by adapting the technique of the operative group for hospital environments with high level of stress, defunctionalization and disruption of daily life. In this report we describe the conformation in this MSU of therapeutic operative groups of patients with physical, cognitive or palliative care impairment. The methodology for the analysis was based on the prospective narrative record of each group meeting. We present a theoretical reflection on the adaptations to the framing and the planning of each group activity. This allowed us to achieve continuity and group belonging in the operative groups developed in this hospital context. (AU)

Capacidade funcional de pacientes com indicação de cuidados paliativos na atenção primária / Functional capacity of patients indicated for palliative care in primary care

INTRODUÇÃO: Pacientes com indicação de cuidados paliativos podem ter perda da capacidade funcional e da qualidade de vida, mas há pouca informação sobre essas condições na atenção primária à saúde. OBJETIVO: Caracterizar os aspectos funcionais e sintomáticos dos indivíduos com indicação de cuidados paliativos na atenção primária. MÉTODOS: Estudo transversal e descritivo com seis equipes de saúde da família de três unidades básicas de saúde de Londrina, Paraná, que indicaram pacientes com necessidade de cuidados paliativos. Os pacientes foram avaliados pela Escala de Performance de Karnofsky (EPK), pela Escala de Avaliação de Sintomas de Edmonton (ESAS) e por questionário sociodemográfico e clínico. RESULTADOS: 73 pacientes (30 homens e 43 mulheres) foram incluídos, com idade média de 77,2 ± 12,1 anos. Demências e doenças cerebrovasculares foram as condições mais frequentes com 20 (27%) e 19 (26%) pacientes, respectivamente. A média na EPK foi de 47,9 ± 13,9 pontos, sendo 44 ± 11,3 pontos para homens e 51 ± 11,3 para mulheres, com diferença significativa entre os sexos (p = 0,023). Pacientes com câncer tiveram um melhor grau de funcionalidade em comparação àqueles com doenças neurológicas. A ESAS indicou que os sintomas mais frequentes foram o comprometimento do bem-estar, dor, cansaço e sonolência, todos com escore médio abaixo de 3 pontos (intensidade leve). Pacientes sem cuidadores tiveram melhor status funcional, mas apresentaram maior intensidade para dor e cansaço. CONCLUSÃO: Todos os pacientes tinham alguma limitação da funcionalidade, sendo aqueles com doença neurológica os mais acometidos. Os sintomas tiveram, no geral, uma intensidade leve. A presença de cuidadores pode ter influência num melhor controle dos sintomas.

INTRODUCTION: Patients indicated for palliative care may have losses in functional capacity and quality of life, but there is little information about these conditions in primary health care. OBJECTIVE: To characterize the functional and symptomatic aspects of individuals indicated for palliative care in primary care. METHODS: This cross-sectional descriptive study involved six family health teams from three basic health units in Londrina, Paraná, Brazil that indicated patients with palliative care needs. The patients were assessed with the Karnofsky Performance Scale (KPS), the Edmonton Symptom Assessment Scale (ESAS) and a sociodemographic and clinical questionnaire. RESULTS: 73 patients (30 men and 43 women) whose mean age was 77.2 ± 12.1 years were included. Dementia and cerebrovascular diseases were the most frequent conditions, with 20 (27%) and 19 (26%) patients, respectively. The mean KPS score was 47.9 ± 13.9 points (44 ± 11.3 points for men and 51 ± 11.3 for women), with a significant difference between the sexes (p = 0.023). Cancer patients had better functionality than those with neurological diseases. The ESAS, whose mean score was below 3 points (mild intensity), indicated that the most frequent symptoms were impaired well-being, pain, fatigue and drowsiness. Patients without caregivers had better functional status, but greater pain and fatigue intensity. CONCLUSION: All patients had some functional limitations, and those with neurological diseases were the most affected. The symptoms were generally mild. The presence of caregivers may positively influence symptom control.

Matriz de competências de medicina paliativa para o geriatra / Competency framework of palliative medicine for geriatricians

INTRODUÇÃO E OBJETIVO: Apesar da grande interface entre cuidados paliativos (CPs) e geriatria, ainda não há propostas de currículos de competências de medicina paliativa (MP) para geriatra no Brasil. Diante disso, objetivou-se desenvolver uma matriz de competências de medicina paliativa para o geriatra (MCMPG), especialmente para aquele em formação. MÉTODO: A primeirafase consistiu na elaboração da matriz piloto. Para se determinar o consenso, um grupo de geriatras com certificação de área de atuação em MP de todas as regiões do país foi convidado a opinar sobre as competências elencadas na matriz piloto. Foram duas etapas (2ª e 3ª fases) de metodologia Delphi modificada para se obter o consenso (nível de concordância maior que 50 e 80%, respectivamente, na 2ª e 3ª fases). E, por fim, realizada a fase de consulta pública no XXI Congresso Brasileiro de Geriatria e Gerontologia e via site da Academia Nacional de Cuidados Paliativos. RESULTADOS: Dezenove experts em MP e Geriatria avaliaram a MCMPG. O nível de concordância de todas as áreas temáticas foi maior que o determinado, exceto a sedação paliativa (20% discordância). A MCMPG finalizou com 13 áreas temáticas, 105 competências, sendo 11 de pré­requisitos, 52 essenciais, 24 desejáveis e 18 avançadas. CONCLUSÃO: Definiu-se uma matriz de competências de CPs que pode ser integrada à educação médica, especificamente à pós-graduação em Geriatria. Propõe-se que os serviços de residência em Geriatria ofereçam, pelo menos, o treinamento das competências "essenciais", nas áreas temáticas propostas fortalecendo a educação em CPs de forma homogênea em todo o país.

INTRODUCTION AND OBJECTIVE: Despite a great interface between palliative care (PC) and geriatrics, there are currently no curriculum proposals of palliative medicine (PM) competencies for geriatricians in Brazil. Thus, the aim was to develop a competency framework of palliative medicine for geriatricians (CFPMG), especially for those under training. METHOD: The first phase consisted of preparing a pilot framework. To reach a consensus, geriatricians with expertise in the field of PM from all Brazilian regions were invited to express their opinions on the competencies listed in the pilot framework. A modified Delphi method was used in the 2nd and 3rd phases to obtain a consensus (level of agreement greater than 50% and 80%, respectively). Finally, a public consultation phase was conducted in the 21st Brazilian Congress on Geriatrics and Gerontology, and via Brazilian National Academy of Palliative Care website. RESULTS: Nineteen experts in PM and geriatrics evaluated the CFPMG. The level of agreement in all thematic areas was greater than that required, except for palliative sedation (20% of disagreement). The CFPMG concluded with 13 thematic areas and 105 competencies, including 11 prerequisite, 52 core, 24 desirable, and 18 advanced competencies. CONCLUSION: The defined competency framework of PC may be integrated into medical education, specifically into geriatric medicine training. Our suggestion is that residency programs in geriatrics provide training at least in the core competencies from the proposed thematic areas, thereby strengthening PC education homogeneously across the country.

Cuidados paliativos em enfermagem ao idoso em UTI: uma revisão integrativa / Cuidados paliativos en enfermería a adultos mayores en UCI: una revisión integrativa / Palliative nursing care in the elderly in UCI: an integrative review

Objective: to identify key interventions and nursing actions to elderly patient in palliative care in the UCI. Methods: This is a descriptive study with qualitative approach of the kind integrative review, which analyzed 16 articles published between the years 2005-2014, in databases Scielo, Lilacs and BDENF. For the selection and analysis of the articles was used a validated instrument. Results: Most of the articles were published in 2013, in journals of general nursing, emerging three thematic categories: nursing in relieving pain and suffering in palliative care, communication as therapeutic treatment and multidisciplinary approach in UTI as a care strategy. Conclusion: it is proposed that further research be conducted in an attempt to deepen and publish strategies for a good senior care in intensive care and improve the service method in the workplace.

Objetivo: identificar as principais intervenções e ações da enfermagem ao paciente idoso sob cuidados paliativos em UTI. MÉTODOS: Trata-se de um estudo descritivo com abordagem qualitativa do tipo revisão integrativa, do qual foram analisados 16 artigos publicados entre os anos de 2005 a 2014, nas bases de dados Scielo, Lilacs e Bdenf. Para a seleção e análise dos artigos foi utilizado um instrumento validado. RESULTADOS: A maioria dos artigos foram publicados no ano de 2013, em periódicos de enfermagem geral, emergindo três categorias temáticas: a Enfermagem no alívio da dor e sofrimento em cuidados paliativos, a comunicação como tratamento terapêutico e abordagem multiprofissional em UTI como estratégia de cuidado. CONCLUSÃO: Propõe-se que pesquisas posteriores sejam realizadas, na tentativa de aprofundar e publicar estratégias para um bom atendimento ao idoso sob cuidados paliativos em terapia intensiva e melhorar o método de assistência nos ambientes de trabalho. DESCRITORES: Cuidado Paliativo; Idoso; Unidades de Terapia Intensiva.

Objetivo: identificar las principales intervenciones y acciones de La enfermería al paciente mayor sobre los cuidados paliativos en UCI. Métodos: Se trata del estudio descriptivo con abordaje cualitativa Del tipo revisión integrativa, de los cuales fueron analisados 16 artículos publicados entre los años de 2005 hasta 2014,en las bases de datos Scielo, Lilacs y Bdenf. Para la selección y análisis de los artículos fue utilizado un instrumento validado. Resultados: La mayoría de los artículos fueronpublicados en el año de 2013, en periódicos de enfermería general, surgiendo tres categorías temáticas: la Enfermería en el alívio del dolor y sufrimiento en cuidados paliativos, la comunicación como tratamiento terapéutico y abordaje multiprofesional en UCI como estratégia de cuidado. Conclusión: Se propone que investigaciones posteriores Sean realizadas, en la tentativa de aprofundar y publicar estratégias para um buen atendimiento al adulto mayor sobre cuidados paliativos en cuidado intensivo y mejorar el método de asistencia en los ambientes de trabajo.