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.

Practice recommendations for culturally sensitive communication at the end of life in intensive care: A modified eDelphi study.

BACKGROUND: Clinicians need specific knowledge and skills to effectively communicate with patients and their family when a patient is dying in the ICU. End-of-life communication is compounded by language differences and diverse cultural and religious beliefs. AIM: The aim was to develop and evaluate practice recommendations for culturally sensitive communication at the end of life. METHOD: Modified two-round eDelphi study. An Australian national sample of 58 expert ICU clinicians of nursing and medical backgrounds participated in an online survey to rate the relevance of 13 practice recommendations. Ten clinicians participated in a subsequent expert panel interview to provide face validity and comprehensive details about the practical context of the recommendations. Survey data were analysed using descriptive statistics, interview data using deductive content analysis. RESULTS: All 13 practice recommendations achieved item content validity index (I-CVI) above 0.8, and scale content validity index (S-CVI) of 0.95, indicating sufficient consensus. Recommendations prioritising use of professional interpreters and nurse involvement in family meetings achieved near perfect agreement amongst participants. Recommendations to facilitate family in undertaking cultural, spiritual and religious rituals and customs, advocate for family participation in treatment limitation discussions, and clinician access to professional development opportunities about culturally sensitive communication also achieved high level consensus. CONCLUSION: These practice recommendations provide guidance for ICU clinicians in their communication with patients and families from culturally diverse backgrounds. IMPLICATIONS FOR CLINICAL PRACTICE: Clinicians want practice recommendations that are understandable and broadly applicable across diverse ICU contexts. The high consensus scores confirm these practice recommendations are relevant and feasible to clinicians who provide end-of-life care for patients and their family members. The recommendations also provide clear guidance for ICU leaders, managers and organisational policy makers.

What do family caregivers of patients with life-threatening diseases need from healthcare professionals? A qualitative study.

OBJECTIVES: To explore the common ground of what family caregivers need in their various roles (caregiver, care recipient and patient's partner, child or friend) from healthcare professionals across healthcare settings and disease trajectories. DESIGN: Interviews were conducted with family caregivers of patients with life-threatening diseases who were treated at home, in hospitals, nursing homes or hospices between 2017 and 2022. Reflexive thematic analysis was performed. SETTING/PARTICIPANTS: 63 family caregivers of 65 patients were interviewed. Of the patients, 36 (55%) had COVID-19 and 29 (45%) had other life-threatening diseases (eg, advanced cancer, dementia). The majority of family caregivers were women (83%) and children of the patient (56%). RESULTS: Three themes were developed regarding family caregivers' core needs across their different roles: (1) 'feeling seen and valued', (2) 'experiencing trust in the provided care' and (3) 'experiencing guidance and security'. Actions of healthcare professionals that meet those needs relate to their contact and relationship with family caregivers, information provision, practical and emotional support, the care for the patient and facilitating the connection between family caregivers and patients. DISCUSSION: Healthcare professionals should be trained in meeting family caregivers' core needs, in which their (collaborative) relationship with them plays an important role. Efforts to meet the core needs should be incorporated into healthcare organisations' workflows, and future research should investigate related barriers and facilitators.

Differences in service utilization between pediatric and adult palliative care services in a single center.

OBJECTIVES: Current recommendations do not separate adult and pediatric palliative care (PC) in terms of the personnel needed, or the distribution of care between community and hospital-based services. We evaluated the differences in the utilization of pediatric and adult hospital PC services for non-oncological patients. METHODS: Retrospective study. Parameters included demographics, underlying diagnoses, number of consultations per patient, duration of PC involvement, and follow-up. All non-oncology patients seen by the adult or pediatric PC teams between June 2021 and July 2023 at a single tertiary hospital. RESULTS: A total of 445 adults and 48 children were seen by the adult and pediatric palliative teams, respectively. Adults were primarily seen in the terminal stages of common chronic diseases, with a high mortality rate. Children were mainly seen at a very young age with rare and complicated diseases. Children needed longer duration of follow-up (114 vs. 5 days, p < 0.001), more consultations (8.5 vs. 4, p < 0.001), and died less while hospitalized (25% of patients vs. 61.6%, p < 0.001). SIGNIFICANCE OF RESULTS: Adult patients had relatively common diseases, seen and treated often by primary care practitioners, whereas children had rare life-limiting diseases, which primary care pediatricians may have limited experience with, and which require involvement of multiple specialized hospital-based services. Future healthcare PC planning should consider these factors in planning the primary setting for PC teams, specifically more training of adult general practitioners in PC skills, and earlier referral of pediatric patients to hospital-based PC.

Thiamine deficiency as a differential diagnosis for severe fatigue in terminally ill cancer patients.

OBJECTIVES: Patients with advanced cancer present various symptoms as their disease progresses. Among these, fatigue is a frequent symptom in patients with advanced cancer and is associated with decreased quality of life (QOL). However, there are few reports regarding its association with thiamine deficiency (TD). METHODS: We report a case in which we found TD in a patient with advanced lung cancer who presented with weight loss, significant fatigue, and appeared to have a worsening general condition, for whom symptoms were dramatically improved within a short period of time by intravenous administration of thiamine. RESULTS: The patient was a 76-year-old woman who had been diagnosed with lung cancer and liver metastases 6 months earlier. Due to interstitial pneumonia, she was not a candidate for chemotherapy and so palliative care was started. At 8 months after initial diagnosis, the patient complained of fatigue during a medical examination, so a blood sample was taken. A week later, she visited the hospital with a cane. She felt extremely fatigued and was unable to stand, but results from the previous blood test revealed that a TD. The fatigue disappeared 15 minutes after intravenous administration of thiamine and she was able to return home without the cane. SIGNIFICANCE OF RESULTS: Fatigue is a frequent symptom in advanced cancer patients, and TD may be the underlying cause. Inclusion of TD in the differential diagnosis may contribute to improving patient QOL.

Palliative care-based arguments against assisted dying.

Opponents of legalised assisted dying often assert that palliative care is worse in countries where assisted dying has been legalised, and imply that legalised assisted dying makes palliative care worse. This study considers five versions of this claim: that it is difficulty to access expert palliative care in countries where assisted dying has been legalised, that those countries rank low in their quality of end-of-life care; that legalising assisted dying doesn't expand patient choice in respect of palliative care; that growth in palliative care services has stalled in countries where assisted dying has been legalised; and that legalised assisted dying impedes the growth of palliative care or causes it to decline. In each case, it concludes that neither argumentation nor evidence supports these claims.

Caring for Hindu patients at the end-of-life: A narrative review.

OBJECTIVES: This paper reviews the existing literature to identify specific challenges that may arise in the context of providing palliative and end-of-life (EOL) care for Hindu patients in the physical, psychological, and spiritual domains. We offer practical strategies where appropriate to mitigate some of these challenges. We review how the Hindu faith impacts EOL decision-making, including the role of the family in decision-making, completion of advance directives, pain management, and decisions around artificial nutrition and hydration (ANH) and cardiopulmonary resuscitation (CPR). METHODS: The PubMed, MEDLINE Complete, Cochrane, and Embase databases were searched for articles using the search strings combinations of keywords such as Palliative care, Hindu, Hinduism, End of Life Care, India, Spirituality, and South Asian. Once inclusion criteria were applied, 40 manuscripts were eligible for review. RESULTS: Our results are organized into the following 4 sections - how Hindu religious or spiritual beliefs intersect with the physical, psychological, and spiritual domains: and decision-making at the EOL. SIGNIFICANCE OF RESULTS: Hindu beliefs, in particular the role of karma, were shown to impact decision-making regarding pain management, ANH and CPR, and advance directive completion. The complexity of Hindu thought leaves a significant role for interpretation and flexibility for individual factors in decision-making at the EOL.

European Society of Intensive Care Medicine guidelines on end of life and palliative care in the intensive care unit.

The European Society of Intensive Care Medicine (ESICM) has developed evidence-based recommendations and expert opinions about end-of-life (EoL) and palliative care for critically ill adults to optimize patient-centered care, improving outcomes of relatives, and supporting intensive care unit (ICU) staff in delivering compassionate and effective EoL and palliative care. An international multi-disciplinary panel of clinical experts, a methodologist, and representatives of patients and families examined key domains, including variability across countries, decision-making, palliative-care integration, communication, family-centered care, and conflict management. Eight evidence-based recommendations (6 of low level of evidence and 2 of high level of evidence) and 19 expert opinions were presented. EoL legislation and the importance of respecting the autonomy and preferences of patients were given close attention. Differences in EoL care depending on country income and healthcare provision were considered. Structured EoL decision-making strategies are recommended to improve outcomes of patients and relatives, as well as staff satisfaction and mental health. Early integration of palliative care and the use of standardized tools for symptom assessment are suggested for patients at high risk of dying. Communication training for ICU staff and printed communication aids for families are advocated to improve outcomes and satisfaction. Methods for enhancing family-centeredness of care include structured family conferences and culturally sensitive interventions. Conflict-management protocols and strategies to prevent burnout among healthcare professionals are also considered. The work done to develop these guidelines highlights many areas requiring further research.

Assessing Telehealth in Palliative Care: A Systematic Review of the Effectiveness and Challenges in Rural and Underserved Areas.

The integration of telehealth into palliative care has garnered significant attention due to its potential to enhance both access and quality of care, particularly for patients in rural and underserved areas. This interest stems from the need to address geographical and logistical barriers that traditionally hinder palliative care delivery. Despite its potential benefits, the effectiveness of telehealth and the challenges associated with its implementation remain underexplored, necessitating further investigation. This study aims to critically evaluate the effectiveness of telehealth in palliative care by focusing on several key areas: its impact on access to care, symptom management, patient satisfaction, and cost-effectiveness. To achieve this, a systematic review was conducted, synthesizing data from various studies that investigated telehealth interventions within palliative care settings. The review employed a comprehensive search strategy across electronic databases, concentrating on randomized controlled trials (RTCs) published between 2014 and 2024. To ensure the reliability of the findings, low-quality and unrelated studies were excluded, and the remaining studies were meticulously analyzed for bias and methodological quality. The review's findings indicate that telehealth significantly enhances access to palliative care, allowing patients to receive timely and appropriate care without the need for extensive travel. It also improves symptom management and patient satisfaction, aligning to provide patient-centered care. Additionally, telehealth is cost-effective by reducing expenses associated with travel and in-person visits. These benefits highlight telehealth's potential to address some of the critical challenges in palliative care delivery. Despite its advantages, implementing telehealth in palliative care is not without challenges. Technological barriers, such as inadequate infrastructure and device limitations, pose significant hurdles. Integration issues, including the need for seamless incorporation into existing care systems, and varying levels of digital literacy among patients and caregivers, also impact the effectiveness of telehealth. Addressing these challenges is crucial for optimizing telehealth's implementation. Ensuring that telehealth solutions are accessible, user-friendly, and well-integrated into care practices is essential for fully leveraging its potential benefits.

Meaningful patient and public engagement in dissemination-embedding co-production in dementia research.

Background: Patient and Public Involvement and Engagement (PPIE) is still underutilised in both dementia research and corresponding dissemination activities. Aim: To describe the methods, format, and lessons learned in co-creating and co-producing a dissemination strategy for a research project focused on establishing patient-centred outcome measures into routine palliative community care for persons living with dementia (PLWD) and their informal carers. Materials and methods: A participatory, hybrid-format workshop was conducted to co-create the dissemination strategy with a PPIE group. A video presentation of findings and a list of prompts shared prior to the workshop were used to elicit views on dissemination strategies and knowledge translation. The workshop was followed up with a survey to consolidate the dissemination strategy. Workshop minutes and survey responses were analysed using qualitative thematic analysis. Results: 22 participants from our diverse PPIE group attended the workshop. Two major themes emerged: (a) Knowledge translation: building bridges between research and practise, and (b) Collaboration and dissemination: everyone's voice is needed. Participants suggested critical changes to dissemination methods and materials. Successful knowledge translation depends on a strong evidence base. For this, materials need to be tailored to specific audiences. Everyone's voice needs to be integrated through co-production in dissemination activities by PPIE members to influence societal change. Tailored dissemination activities within a dissemination strategy were co-created spanning all phases of the research cycle. Discussion: Informing and educating the public and policymakers about the needs of PLWD relies on disseminating and fostering knowledge translation throughout all phases of the research cycle.

Constricting Gaps: Protocol development, implementation challenges and lessons learned for the reality map of unmet needs for Palliative Care Interventions in advanced cancer patients study in Romania and Switzerland.

Background: Patients with advanced cancer experience many symptoms and needs requiring a Palliative Care Intervention (PCI). Identifying gaps between needs for PCIs and experienced delivery may improve health care, furthermore the association of gaps with quality indicators (QI). The multicentre Romanian (RO)-Swiss (CH) reality map study implemented a novel protocol based on needs concepts and culturally adapted quality indicators (QI). Methods: An interactive mapping guide measuring unmet needs for PCIs monthly over six months, patient characteristics (cognition, EAPC basic data set, Cofactors) and QI (Inappropriate Anticancer Treatment, High Symptom Burden [IPOS, EQ5D], Repeated ER Admissions, Aggressive End-of-Life Care, and Quality of Death-and-Dying) were developed, applying swiss standards for quality assurance. A composite endpoint (QI, cofactors) was planned. Finally, local solutions responding to gaps were piloted. Results: From 308 patients (RO: 262, CH: 46, age 62j [mean], 74 % ECOG PS 1&2, 81 % current anticancer treatment) baseline and first follow-up data revealed main gaps (symptom management, spiritual needs, family support), country differences (e.g. illness understanding, spiritual needs) and a significant association of the number of gaps with depression. Later data become less, and data quality on QI variable, revealing gaps in research conduct competences, resources, and applicability of over-sophisticated quality assurance tools. Nevertheless, the unmet needs data promoted local initiatives, 81 patients participated in feasibility studies. Finally, the joint experience stimulated academic developments and national integration of palliative care into oncology. Conclusions: Pairing motivation and enthusiasm with more modest aims, feasibility testing of all outcomes and investment in research competences may disperse gaps.

Quality of skeletal muscles during allogeneic stem-cell transplantation: a pilot study.

OBJECTIVES: This study investigated the muscle fat fraction (FF) and muscle-related parameters before and after allogeneic hematopoietic stem cell transplantation (HSCT). METHODS: Fat and water signals were derived from the in-phase and out-of-phase MR signal intensities of the pelvis and thigh using the two-point Dixon technique. They were analysed using Synapse Vincent, and muscle quality was evaluated using the FF. The muscle mass was assessed by measuring the thigh and gluteal muscle areas using a manual trace on the MR image. The association between the muscle FF and clinical data was retrospectively determined. RESULTS: This study included 11 patients (6 males). Their mean age was 42.7 years, and eight had leukaemia. Eight were assessed at a mean of 65.4 days post-HSCT. The hip and thigh skeletal muscle FFs were not significantly different during HSCT. The grip and lower limb muscle strengths decreased significantly after HSCT. Patients with low FFs before transplantation tended to lose muscle strength, and the increase in FF and decrease of muscle strength were correlated. CONCLUSIONS: Muscle strength and quantity decrease during the early phase after HSCT, especially in patients with low FF muscles. Therefore, interventions based on muscle quality and quantity are essential.

The prevalence of lifetime trauma and association with physical and psychosocial health among adults at the end of life.

BACKGROUND: National guidelines recognize lifetime trauma as relevant to clinical care for adults nearing the end of life. We determined the prevalence of early life and cumulative trauma among persons at the end of life by gender and birth cohort, and the association of lifetime trauma with end-of-life physical, mental, and social well-being. METHODS: We used nationally representative Health and Retirement Study data (2006-2020), including adults age > 50 who died while enrolled (N = 6495). Early life and cumulative traumatic events were measured using an 11-item traumatic events scale (cumulative trauma: 0-5+ events over the lifespan). We included six birth cohorts (born <1924; children of depression [1924-1930]; HRS cohort [1931-1941]; war babies [1942-1947]; early baby-boomers [1948-1953]; mid-baby boomers [1954-1959]). End-of-life outcomes included validated measures of physical (pain, fatigue, dyspnea), mental (depression, life satisfaction), and social (loneliness, social isolation) needs. We report the prevalence of lifetime trauma by gender and birth cohort and the adjusted probability of each end-of-life outcome by trauma using multivariable logistic regression. RESULTS: The mean age at death was 78 years (SD = 11.1) and 52% were female. Lifetime trauma was common (0 events: 19%; 1-2: 47%; 3-4: 25%; 5+: 9%), with variation in individual events (e.g., death of a child, weapons in combat) by gender and birth cohort. After adjustment, increasing cumulative trauma was significantly associated (p-value<0.001) with higher reports of end-of-life moderate-to-severe pain (0 events: 46%; 1-2 events: 50%; 3-4 events: 57%; 5+ events: 60%), fatigue (58%; 60%; 66%; 69%), dyspnea (46%; 51%; 56%; 58%), depression (24%; 33%; 37%; 40%), loneliness (12%; 17%; 19%; 22%), and lower life satisfaction (73%; 63%; 58%; 54%). CONCLUSION: Older adults in the last years of life report a high prevalence of lifetime traumatic events which are associated with worse end-of-life physical and psychosocial health. A trauma-informed approach to end-of-life care and management of physical and psychosocial needs may improve a patient's quality of life.

Patient considerations of social media account management after death.

PURPOSE: Social media is widely used but few studies have examined how patients with advanced cancer want their accounts managed after death. The objective of this study was to determine the proportion of our patients with advanced cancer who have discussed the post-mortem management of their social media accounts with their family or friends. METHODS: This was a cross-sectional survey in which patients with advanced cancer at an outpatient Supportive Care Clinic at a tertiary cancer center completed a novel survey on social media use that assessed patients' social media use practices, attitudes and preferences, and reactions to the survey. RESULTS: Of 117 patients, 72 (61.5%) were women, and the mean age was 56.4 years old. We found that 24 (21%) of our patients have discussed their preferences for management of their social media accounts after death. Patients with a lower annual income were significantly more likely to report having such conversations (p = 0.0036). Completing the survey motivated 76 patients (67%) to discuss their social media accounts and 82 patients (71.3%) to explore how social media will be managed after their death. Half of our study participants reported social media as an important source of coping. CONCLUSION: Few patients have had conversations on the management of their accounts after death, although more were interested in exploring their options further. More research is needed to examine the role of social media as a digital legacy and a coping tool for patients with advanced cancer.

A Scoping Review of the Barriers and Facilitators to Clinician Engagement in Hospital-Based Palliative Care in Australian Hospitals.

Background: Current research has shown that inpatient palliative care (PC) services are under-utilized, poorly integrated, and frequently introduced too late during inpatient hospital stays. The aim of this study was to identify a comprehensive list of multi-disciplinary facilitators and barriers to inpatient PC in Australian hospitals through a scoping literature review. Methods: This review identified articles published since 2000 from 3 electronic databases (CINAHL Plus, MEDLINE and Embase), which included discussion of collaboration among non-palliative care clinicians and palliative care professionals in Australian hospitals. We used an inductive approach to identifying key domains of barriers and facilitators. Results: Thirty-four articles met inclusion criteria following full text review. Barriers and facilitators were categorized in 7 domains: (1) Patient concerns, (2) Family concerns, (3) Clinician knowledge, education, and experience in palliative care, (4) Recognition and acceptance of prognosis when a patient was dying or needing end of life treatment, (5) Reconciliation of individual and professional values around PC, (6) Clinician access to resources for PC in the hospital, and (7) Communication between the PC team and ward clinicians. Each domain included potentially substantial barriers to PC delivery and practice. However, given the small sample sizes and specialized settings of many included studies, it was difficult to draw conclusions on the relative significance of different barriers across hospitals. Conclusion: This review identified a number of barriers and facilitators across studies. Subsequent research needs to more comprehensively compare factors impacting PC use in order to improve implementation of PC across hospital settings.

Systematic review of prognostic factors for poor outcome in people living with dementia that can be determined from primary care medical records.

BACKGROUND: Dementia has a major impact on individuals, their families and caregivers, and wider society. Some individuals experience a faster decline of their function and health compared to others. The objective of this systematic review was to determine prognostic factors, measurable in primary care, for poor outcome in people living with dementia. METHODS: Cohort studies set in the community or primary care, and examining prognostic factors for care home admission, cognitive decline, or palliative care were included. Databases were searched from inception to 17th June 2022. Identified papers were screened, the risk of bias assessed using Quality in Prognostic Studies (QUIPS) tool, and data extracted by 2 reviewers, with disagreements resolved by consensus or a 3rd reviewer. A narrative synthesis was undertaken, informed by GRADE, taking into consideration strength of association, risk of bias and precision of evidence. Patient and Public Involvement and Engagement (PPIE) and stakeholder input was obtained to prioritise factors for further investigation. RESULTS: Searches identified 24,283 potentially relevant titles. After screening, 46 papers were included, 21 examined care home admission investigating 94 factors, 26 investigated cognitive decline as an outcome examining 60 factors, and 1 researched palliative care assessing 13 factors. 11 prognostic factors (older age, less deprived, living alone, white race, urban residence, worse baseline cognition, taking dementia medication, depression, psychosis, wandering, and caregiver's desire for admission) were associated with an increased risk of care home admission and 4 prognostic factors (longer duration of dementia, agitation/aggression, psychosis, and hypercholesterolaemia) were associated with an increased risk of cognitive decline. PPIE and other stakeholders recommended further investigation of 22 additional potential prognostic factors. CONCLUSIONS: Identifying evidence for prognostic factors in dementia is challenging. Whilst several factors highlighted as of relevance by our stakeholder groups need further investigation, inequalities may exist in care home admission and there is evidence that several prognostic factors measurable in primary care could alert clinicians to risk of a faster progression. REGISTRATION: PROSPERO CRD42019111775.

Feasibility of a digital palliative care intervention (Convoy-Pal) for older adults with heart failure and multiple chronic conditions and their caregivers: a waitlist randomized control trial.

BACKGROUND: Although older adults with heart failure (HF) and multiple chronic conditions (MCC) frequently rely on caregivers for health management, digital health systems, such as patient portals and mobile apps, are designed for individual patients and often exclude caregivers. There is a need to develop approaches that integrate caregivers into care. This study tested the feasibility of the Social Convoy Palliative Care intervention (Convoy-Pal), a 12-week digital self-management program that includes assessment tools and resources for clinical palliative care, designed for both patients and their caregivers. METHODS: A randomized waitlist control feasibility trial involving patients over 65 years old with MCC who had been hospitalized two or more times for HF in the past 12 months and their caregivers. Descriptive statistics were used to evaluate recruitment, retention, missing data, self-reported social functioning, positive aspects of caregiving, and the acceptability of the intervention. RESULTS: Of 126 potentially eligible patients, 11 were ineligible and 69 were deceased. Of the 46 eligible patients, 31 enrolled in the trial. Although 48 caregivers were identified, only 15 enrolled. The average age was 76.3 years for patients and 71.6 years for caregivers, with most participants being non-Hispanic White. Notably, 4% did not have access to a personal mobile device or computer. Retention rates were 79% for intervention patients, 57% for intervention caregivers, and 60% for control participants. Only 4.6% of survey subscales were missing, aided by robust technical support. Intervention patients reported improved social functioning (SF-36: 64.6 ± 25.8 to 73.2 ± 31.3) compared to controls (64.6 ± 27.1 to 67.5 ± 24.4). Intervention caregivers also reported increased positive perceptions of caregiving (29.5 ± 5.28 to 35.0 ± 5.35) versus control caregivers (29.4 ± 8.7 to 28.0 ± 4.4). Waitlist control participants who later joined the Convoy-Pal program showed similar improvements. The intervention was well-rated for acceptability, especially regarding the information provided (3.96 ± .57 out of 5). CONCLUSIONS: Recruiting informal caregivers proved challenging. Nonetheless, Convoy-Pal retained patients and collected meaningful self-reported outcomes, showing potential benefits for both patients and caregivers. Given the importance of a patient and caregiver approach in palliative care, further research is needed to design digital tools that cater to multiple simultaneous users. TRIAL REGISTRATION: ClinicalTrials.gov Identifier NCT04779931. Date of registration: March 3, 2021.

A Joanna Briggs Institute Framework Approach to Shared Decision Making in End-of-Life.

AIM: To implement shared decision-making (SDM) through a patient decision aid (PtDA) for the initiation of palliative care (PC) in end-of-life (EOL) cancer patients. METHODOLOGY: A comprehensive Scoping Review was conducted on SDM in PubMed, CINAHL and PsycInfo. An evidence-based implementation of PtDAs was created using the Joanna Briggs Institute framework, which followed rigorous pillars: (1) context, (2) facilitation and (3) evaluation. RESULTS: Fifteen studies were identified and categorised into (1) Implementation characteristics and (2) Strategies for implementing SDM in terminally ill cancer patients. SDM should consider the decision-making location, optimal timing, participants and decision type. Strategies include professional training, PtDAs and implementation programmes. A PtDA implementation protocol in video format for deciding to initiate PC is proposed, following International Patient Decision Aid Standards (IPDAS) and Clinical Practice Guidelines (CPG). CONCLUSIONS: SDM implementation should be guided by evidence-based methodological models justifying and structuring its execution, especially in complex and interdisciplinary contexts. National or international frameworks facilitate the adoption of health innovations, such as PtDAs, benefiting patients and improving their usage. PRACTICE IMPLICATIONS: SDM is not just a concept but an important approach to the Care of cancer patients at EOL, enhancing patient satisfaction and improving care quality. The success and sustainability of SDM hinge on the fundamental aspects of staff training, interdisciplinary collaboration and ongoing evaluation. The lack of specific aid in Spanish underscores the immediate need for local development. Further research is needed in this area, as most reviewed studies did not measure SDM effectiveness in diverse hospital settings. PATIENT OR PUBLIC CONTRIBUTION: This proposal was developed based on the experience and input of the nursing staff from the healthcare service where it is intended to be implemented.

A social work contribution in end-of-life care: incorporating critical spirituality.

This article outlines how a framework for critical spirituality incorporated into a social work perspective, can contribute to work in end-of-life care. This is based on my experience of working in interdisciplinary teams, including pastoral care workers or chaplains, nurses, doctors, a range of carers and other allied health professionals. Traditionally, social workers have focused on the holistic well-being of the dying person and their families but tended not to actively include the spiritual. However, there is increased recognition in social work of the value of integrating critical spirituality: understanding the person's own sense of meaning and the social assumptions that might influence how this can be expressed. This might mean working with individuals and families on understanding how societal expectations of the dying process are undermining the person's desire to die in a particular way. To do this, workers must themselves recognise their own internalised societal assumptions and be willing to challenge these. The article explores the potential value of how such a social work approach can integrate critical, postmodern, green and relational theories as well as indigenous worldviews with key qualities of practice such as humility, deep listening and waiting, and the ability to be critically reflective. Key ideas are used to help focus practice and the inclusion of critical spirituality. These include (1) exploring the influence of the person's history and social context; (2) the value of particular relationships and networks, including community and environmental connections and activities and processes that are an intrinsic aspect of the person's well-being; (3) challenging workers to be critically and reflectively aware of their own assumptions and values to ensure the dying person can truly express their preferences related to death and dying. Examples from my experience are used to illuminate how such perspectives can be actively included in practice across professional boundaries to shift perceptions of 'how things are done here' to what can be more life enhancing for those in palliative care.