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.

Prophylactic antibiotics and corticosteroid prescribing in palliative medicine: retrospective study.

OBJECTIVES: To investigate whether patients under the care of the community specialist palliative care team receiving steroids are at increased risk of infection.To identify other risk factors that predispose community palliative care patients to infection. METHODS: A retrospective chart review of all patients referred to a community specialist palliative care service. RESULTS: 177 adult patients were referred to the community specialist palliative care service. Corticosteroids were significantly associated with infection. 39% of patients who received an oral steroid had infection compared with 22% of those who did not receive steroids (OR 2.6 (95% CI 1.07 to 3), RR 1.78 (95% CI 1.08 to 2.9), p=0.02). Regular opioids were significantly associated with infection. 33% of patients receiving a regular opioid had an infection compared with 15% of those not receiving a regular opioid (OR 2.69 (95% CI 1.26 to 5.7), RR 2.06 (95% CI 1.2 to 3.8), p=0.008). Male gender, lung disease, diabetes and immunosuppressive therapies were associated with an increased rate of infection but were not statistically significant. CONCLUSIONS: Oral corticosteroids were associated with a significantly increased infection rate in a community palliative care population. These patients could potentially benefit from antibiotic prophylaxis while receiving corticosteroids.

Rasch analysis of a palliative care self-efficacy instrument for nursing assistants.

This study used Rasch models to evaluate the psychometric properties of a self-efficacy instrument focused on psychosocial aspects of palliative care developed for nursing assistants (NAs). NAs from 6 skilled nursing facilities in Illinois, U.S. (n=102) were divided into intervention and control groups and answered 16 questions at baseline and 1-month follow-up. A total of 84 NAs completed assessments at both times. The rating scale structure improved when 3 instead of 5 response categories were used. After removing 4 items, the instrument demonstrated unidimensionality and local independence. A person-item threshold map indicated a ceiling effect. For the intervention group, 2 items and 1 item became easier and more difficult respectively post-training. With adjustments, the 12-item instrument became an adequate measure of palliative care self-efficacy. By using PCSE-NA as a tool to assess palliative care self-efficacy of NAs, geriatric nurses can identify weaknesses of and ways to improve training for NAs.

Investigating Data Diversity and Model Robustness of AI Applications in Palliative Care and Hospice: Protocol for Scoping Review.

BACKGROUND: Artificial intelligence (AI) has become a pivotal element in health care, leading to significant advancements across various medical domains, including palliative care and hospice services. These services focus on improving the quality of life for patients with life-limiting illnesses, and AI's ability to process complex datasets can enhance decision-making and personalize care in these sensitive settings. However, incorporating AI into palliative and hospice care requires careful examination to ensure it reflects the multifaceted nature of these settings. OBJECTIVE: This scoping review aims to systematically map the landscape of AI in palliative care and hospice settings, focusing on the data diversity and model robustness. The goal is to understand AI's role, its clinical integration, and the transparency of its development, ultimately providing a foundation for developing AI applications that adhere to established ethical guidelines and principles. METHODS: Our scoping review involves six stages: (1) identifying the research question; (2) identifying relevant studies; (3) study selection; (4) charting the data; (5) collating, summarizing, and reporting the results; and (6) consulting with stakeholders. Searches were conducted across databases including MEDLINE through PubMed, Embase.com, IEEE Xplore, ClinicalTrials.gov, and Web of Science Core Collection, covering studies from the inception of each database up to November 1, 2023. We used a comprehensive set of search terms to capture relevant studies, and non-English records were excluded if their abstracts were not in English. Data extraction will follow a systematic approach, and stakeholder consultations will refine the findings. RESULTS: The electronic database searches conducted in November 2023 resulted in 4614 studies. After removing duplicates, 330 studies were selected for full-text review to determine their eligibility based on predefined criteria. The extracted data will be organized into a table to aid in crafting a narrative summary. The review is expected to be completed by May 2025. CONCLUSIONS: This scoping review will advance the understanding of AI in palliative care and hospice, focusing on data diversity and model robustness. It will identify gaps and guide future research, contributing to the development of ethically responsible and effective AI applications in these settings. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/56353.

"The patient as teacher" - thematic analysis of undergraduate medical students' experiences with an experiential learning project in palliative care.

BACKGROUND: Experiential learning holds high potential for medical students' education in palliative care. At RWTH Aachen University in Germany, medical students can participate in the course "The Patient as Teacher" offering a one-to-one exchange with a terminally ill patient over a period of several weeks complemented with four supervision sessions and writing of a reflective essay. The course had run from 2005 to 2020 before it was paused due to the Covid-19 pandemic. This study aimed to assess the course's value as a palliative care teaching tool by investigating students' motivation and experiences over the years 2005-2020. METHODS: A stratified sample of 24 essays was taken from all submitted essays (n = 78), eight essays from the years 2005-2009, 2010-2014, and 2015-2020. Subsequently, a thematic analysis of the selected essays was conducted. RESULTS: The students felt motivated by the opportunity to gain more experience in palliative care, to improve their communication skills and to decrease insecurities in interaction with terminally ill patients. They learned about the patient's biography and medical history, and encountered physical, psychological, social, and spiritual dimensions of living with a life-limiting disease. Moreover, they experienced relationship building and communication with a terminally ill patient outside their role as future doctors. Ultimately, they considered their participation as a beneficial experience on both a personal and professional level. CONCLUSIONS: The course "The Patient as Teacher" presents a valuable tool for experiential learning in palliative care, which has elicited an unceasingly positive response among the students who participated over the years. It has facilitated medical students in overcoming insecurities in dealing with terminally ill patients and supported them in further developing their professional identity.

Community-based palliative care needs and barriers to access among cancer patients in rural north India: a Participatory action research.

BACKGROUND: This paper aimed to explore the palliative care (PC) needs and barriers to access among cancer patients in a rural region of North India with a high cancer burden. METHODS: A Participatory action research (PAR) approach was employed. Situational assessment, community sensitization workshops (CSWs) and door-to-door surveys were planned, conducted and developed over three PAR cycles. A parallel convergent mixed-methods approach was adopted wherein the quantitative data from door-to-door surveys and qualitative data from CSWs and investigator field notes were collected and analyzed to provide a comprehensive understanding of PC needs and barriers to access. Descriptive statistics and thematic analysis were used. RESULTS: A total of 27 CSWs involving 526 stakeholders were conducted. A total of 256 cancer patients were assessed for PC needs and symptom burden using the Supportive and Palliative Care Indicators (SPICT-4ALL) and the Edmonton Symptom Assessment System (ESAS) tool, respectively. Based on the SPICT assessment, all patients (n = 256) satisfied general and/or cancer-specific indicators for PC. The majority (56.6%) had ≥ one moderate-severe symptom, with the most common symptoms being tiredness, pain and loss of appetite. Analysis of qualitative findings generated three themes: unmet needs, burden of caregiving, and barriers and challenges. Cancer affected all domains of patients' and their families' lives, contributing to biopsychosocial suffering. Social stigma, discrimination, sympathizing attitudes and lack of emotional and material support contributed to psychosocial suffering among cancer patients and their caregivers. Lack of awareness, nearby healthcare facilities, transportation, essential medicines, trained manpower and education in PC, collusion, fear of social discrimination, faulty perceptions and misconceptions about cancer made access to PC difficult. CONCLUSIONS: The study emphasize the need for and provide a roadmap for developing context-specific and culturally appropriate CBPC services to address the identified challenges and needs. The findings point towards education of CHWs in PC; improving community awareness about cancer, PC, government support schemes; ensuring an uninterrupted supply of essential medicines; and developing active linkages within the community and with NGOs to address the financial, transportation, educational, vocational and other social needs as some of the strategies to ensure holistic CBPC services. TRIAL REGISTRATION: Clinical Trial Registry of India (CTRI/2023/04/051357).

Application of Kolcaba's Comfort Theory in healthcare promoting adults' comfort: a scoping review.

BACKGROUND: Comfort is a primary goal of healthcare. Theory-informed interventions and measurement are essential for comfort enhancement. OBJECTIVES: To categorise and synthesise the international literature on the application of Kolcaba's Comfort Theory in research and practice aiming to promote adults' comfort. ELIGIBILITY CRITERIA: Papers reporting the application of Kolcaba's Comfort Theory on adult participants published in English and Chinese. SOURCES OF EVIDENCE: MEDLINE, CINAHL, APA PsycInfo, Embase, AMED, Web of Science, Scopus, The Cochrane Library, JBI EBP Database, CNKI, Wan Fang; grey literature of Google Scholar, Baidu Scholar and The Comfort Line were searched from January 1991 to January 2024. CHART METHODS: Following the Joanna Briggs Institute guidance and Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews checklist, two reviewers selected papers and extracted data independently using a standardised chart embedded in NVivo software. A thematic synthesis and a descriptive analysis were provided. RESULTS: The review included 359 papers. Approximately two-thirds (n=216, 60.2%) had been published since 2017. The majority of papers (n=316, 88.0%) originated from China, the USA, Turkey, Brazil and Portugal. The use of Kolcaba's Comfort Theory was dominated in a range of hospital settings (n=263) and with participants suffering neoplasms (n=55). Seven categories of theory application were identified: (I) interventions underpinned by Comfort Theory as the theoretical framework, (II) interventions evaluated by instruments derived from Comfort Theory, (III) descriptive or observational studies of services or practices underpinned by Comfort Theory, (IV) surveys using questionnaires derived from Comfort Theory, (V) questionnaires development or adaption based on Comfort Theory, (VI) qualitative studies interpreted by Comfort Theory and (VII) literature reviews and discussion about Comfort Theory use. The most commonly evaluated interventions included music therapy (n=31), position intervention (n=20) and massage (n=19), and the most commonly used questionnaire was General Comfort Questionnaire (n=109). CONCLUSIONS: Kolcaba's Comfort Theory has been largely used in interventions and assessments across a wide range of contexts, providing a set of options for practitioners. However, quantifying evidence is needed through further systematic reviews, and continuous development of Comfort Theory is warranted based on the categorisation by this review.

In-patient neurosurgical tumor treatments for malignant glioma patients in Germany.

OBJECTIVE: Treatment for malignant gliomas involves multiple disciplines, including neurosurgery, radiation therapy, medical and neuro-oncology, and palliative medicine, with function-preserving neurosurgical tumor removal being crucial. However, real-world data on hospital cases, treatment types, especially regarding surgical approaches, and the associated complication and mortality rates in Germany are lacking. METHODS: We analyzed data on hospital cases involving malignant gliomas (ICD-10-GM code C71) from the German §21 Hospital Remuneration Act, provided by the Institute for the Hospital Remuneration System (InEK GmbH), from 2019 to 2022. Our focus was on neuro-oncological operations defined by the German Cancer Society (DKG) and included specific operation and procedure (OPS) codes. RESULTS: From 2019 to 2022, there were 101,192 hospital cases involving malignant gliomas in Germany. Neurosurgical tumor removal was performed in 27,193 cases (26.9%). Microsurgical techniques were used in 95% of surgeries, intraoperative navigation systems in 84%, fluorescence-guided surgeries in 45.6%, and intraoperative neurophysiological monitoring (IONM) in 46.4%. Surgical or medical complications occurred in 2903 cases (10.7%). The hospital mortality rate was 2.7%. Mortality was significantly higher in patients aged 65 and older (Odds ratio 2.9, p < 0.0001), and lower in cases using fluorescence-guided procedures (Odds ratio 0.8, p = 0.015) and IONM (Odds ratio 0.5, p < 0.0001). CONCLUSIONS: Over the course of 4 years, over 100,000 hospital cases involving adult patients diagnosed with malignant gliomas were treated in Germany, with 27,193 cases undergoing tumor removal using various modern surgical techniques. The hospital mortality rate was 2.7%.

Healthcare professionals' experiences of providing palliative care for patients with diabetes - a qualitative study.

BACKGROUND: At present, there are no specific guidelines for the treatment of diabetes in palliative care in Norway. The aim of this study was therefore to explore healthcare professionals' experiences of providing palliative care to individuals with diabetes in specialist as well as primary care settings. METHODS: We interviewed 12 healthcare professionals from two palliative care units in specialist healthcare, one hospice unit in a nursing home, and one dietary care unit providing counselling in the municipality in the eastern part of Norway. Thematic analysis was used to analyze the data. RESULTS: Our analysis generated three main themes: 1) "Quality of life is the main focus", which showed that the healthcare professionals' main focus was on comforting patients through engagement and communication; 2) "An individualized approach", emphasizing that the treatment was tailored to the unique circumstances of each individual and considered factors such as life expectancy, difficult blood glucose control, and multidisciplinary collaboration, and 3) "Diabetes in the background", which highlighted that they had a modest focus on diabetes. Diabetes was seen as another aspect of health that they had to be aware of, but their limited knowledge of diabetes guidelines, technical tools, and treatment choices underscored that attentiveness to the diabetes treatment was not prominent. CONCLUSION: The findings show that a lack of guidelines allowed for diverse approaches to the treatment of patients with diabetes in palliative care. Attentiveness to diabetes was based on the individual healthcare professionals' experience and expertise, professional views, and the circumstances of each individual.

Barriers and facilitators for place of death: A scoping review.

OBJECTIVES: Many factors influence where people die, but most people prefer to die at home. Investigating the factors affecting death at different locations can enhance end-of-life care and enable more people to die at their preferred place. The aim was to investigate barriers and facilitators affecting place of death and compare facilitators and barriers across different places of death. METHODS: A scoping review registered on Open Science Framework was conducted in accordance with the guidelines for Scoping Reviews (PRISMA-ScR). An electronic search of literature was undertaken in MEDLINE, EMBASE, PUBMED, PsycINFO, and CINAHL covering the years January 2013-December 2023. Studies were included if they described barriers and/or facilitators for place of death among adults. RESULTS: This review identified 517 studies, and 95 of these were included in the review. The review identified the following themes. Illness factors: disease type, dying trajectory, treatment, symptoms, and safe environment. Individual factors: sex, age, ethnicity, preferences, and for environmental factors the following were identified: healthcare inputs, education and employment, social support, economy, and place of residence. SIGNIFICANCE OF RESULTS: The factors influencing place of death are complex and some have a cumulative impact affecting where people die. These factors are mostly rooted in structural aspects and make hospital death more likely for vulnerable groups, who are also less likely to receive palliative care and advanced care planning. Disease type and social support further impact the location of death. Future research is needed regarding vulnerable groups and their preferences for place of death.

Utilizing intricate care networks: An ethnography of patients and families navigating palliative care in a resource-limited setting.

BACKGROUND: The increase in non-communicable disease burdens and aging populations has led to a rise in the need for palliative care across settings. In resource-limited settings such as Indonesia, however, notably in rural areas, there is a lack of professional palliative care. Little is known about specific palliative care navigation, as previous studies have mostly focused on cancer care navigation. A locally tailored approach is crucial. AIM: To explore how patients and families navigate palliative care and the problems they experience. DESIGN: An ethnographic study using in-depth interviews and observations, analyzed using reflexive thematic analysis. SETTING/PARTICIPANTS: Interviews with 49 participants (patients, family caregivers, and health professionals) and 12 patient-family unit observations in Banyumas, Indonesia. THE ANALYSIS: Patients and families navigated palliative care through different strategies: (1) helping themselves, (2) utilizing complementary and alternative medicine, (3) avoiding discussing psychological issues, (4) mobilizing a compassionate and advocating community, and (5) seeking spiritual care through religious practices. CONCLUSIONS: Our participants used intricate care networks despite limited resources in navigating palliative care. Several problems were rooted in barriers in the healthcare system and a lack of palliative care awareness among the general public. Local primary health centers could be potential palliative care leaders by building upon pre-existing programs and involving community health volunteers. Cultivating a shared philosophy within the community could strengthen care collaboration and support.

Pharmacological treatment of pain, dyspnea, death rattle, fever, nausea, and vomiting in the last days of life in older people: A systematic review.

BACKGROUND: Evidence based guidelines for treatment of physical symptoms during the last days of life in older people are not available. AIM: We wanted to synthesize the existing evidence on the pharmacological treatment of pain, dyspnea, death rattle, fever, nausea, and vomiting during the last days of life in older people to develop recommendations that can help guide clinical practice. DESIGN: A systematic review was conducted (PROSPERO #CRD42023406100) and reported in accordance with PRISMA guidelines. DATA SOURCES: MEDLINE and EMBASE were searched from inception till March 2023, together with national and international guideline databases. RESULTS: Four predominantly descriptive studies on opioid use were included for the treatment of pain and four for dyspnea, without clear evidence for the choice of one specific opioid, nor a specific opioid dose. For death rattle, five randomized controlled trials and two retrospective studies were included. These provide evidence for the prophylactic treatment of death rattle with hyoscine butylbromide. For fever, nausea, and vomiting, no articles met the inclusion criteria. CONCLUSION: Limited evidence exists to guide the pharmacological treatment of pain, dyspnea, death rattle, fever, nausea, and vomiting in the last days of life of older people. Other than the use of opioids for treatment of pain and dyspnea and prophylactic administration of hyoscine butylbromide to decrease the likelihood of developing death rattle, no specific recommendations can be formulated for use in clinical practice. This demonstrates the challenging nature of research in the last days of life of older people, despite its pressing need.

Experiences and attitudes of nurses with the legislation on assisted suicide in Austria.

OBJECTIVES: In 2022, assisted suicide (AS) was legalized in Austria. We aimed to investigate the experiences and attitudes of palliative care (PC) and hospice nurses toward AS in Austria after the first year of implementation of the new law. METHODS: A cross-sectional survey was distributed online to nurses in every known specialized and general hospice and PC units in Austria (n = 255 units). The questionnaire included sociodemographic characteristics, the Assisted Suicide Attitude Scale, the Comfort Discussing Assisted Suicide Scale, and questions on recent experiences with AS requests. We used Spearman's correlation coefficient for determining associations between sociodemographic characteristics and attitudes toward AS, as well as comfort discussing AS. For comparison of frequencies, we applied ꭓ2 tests. We computed a linear regression model to examine predictors for attitudes toward AS. RESULTS: The total sample were N = 280 nurses. More than half (61.2%) indicated that they had cared for a patient who expressed a wish for AS within the first year of implementation. Though responses varied widely, more nurses expressed support for AS than those were opposed (50.36% and 31.75%, respectively). Factors that statistically contributed to more reluctance toward AS in the regression model were older age, religiousness, and experience of working with patients expressing a wish for AS. SIGNIFICANCE OF RESULTS: This work provides valuable insight into nurses' perceptions toward the legislation of AS in the first year since the new law was passed. The results can inform the future development of the AS system and support for nurses in end-of-life care, and critically contribute to international discussions on this controversial topic.

Descriptors and factors affecting patients' symptom experiences for symptom self-management throughout palliative radiotherapy for advanced lung cancer: A systematic review.

Objective: Palliative thoracic radiotherapy is a key treatment option for symptom management in advanced lung cancer. Continuous symptom monitoring is critical to ensuring optimal therapeutic outcomes and preserving patients' well-being. This systematic review aimed to explore patients' symptom experiences during palliative thoracic radiotherapy for advanced lung cancer. Methods: Following PRISMA guidelines, we conducted a comprehensive search of MEDLINE, EMBASE, CINAHL, Cochrane, and PsycINFO from database inception through August 31, 2023. Eligible studies included those examining the prevalence and severity of symptoms and side effects experienced by adult patients undergoing palliative thoracic radiotherapy for advanced lung cancer, regardless of treatment duration or dosage. Methodological quality was assessed using the standardized QualSyst tool, and data were synthesized narratively. Results: A total of 8 studies met the inclusion criteria. Thirteen symptoms were reported prior to radiotherapy, with cough being the most common (62%). Symptom severity ranged from mild to severe, with dyspnoea recording the highest average score. Distress was not measured during this phase. Post-radiotherapy, fatigue was the most prevalent symptom (69%), followed by cough (64%) and dyspnoea (50%). Symptom severity varied across studies, with improvements noted in cough, dyspnoea, chest pain, and haemoptysis. Moderating factors influencing symptom prevalence and variation included performance status, weight loss, cancer stage, objective tumour response, and radiation-induced pulmonary changes. Conclusions: Symptom control through palliative thoracic radiotherapy demonstrates variability in both frequency and severity of symptoms. Systematic monitoring is essential for identifying persistent symptoms and determining the need for more targeted supportive care interventions.

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.

Exploring the Utility of the Modified Hospitalized-Patient One-Year Mortality Risk Score to Trigger Referrals to Palliative Care for Inpatients With Cancer.

BACKGROUND: Estimating prognosis can be a barrier to timely palliative care involvement. The modified Hospitalized-patient One-year Mortality Risk (mHOMR) score uses hospital admission data to calculate the risk of death within 12 months and may be a useful tool to trigger a referral to palliative care. METHODS: The mHOMR tool was retrospectively applied to consecutive acute admissions to a quaternary cancer center in Toronto, Canada from March 1 to May 31, 2018. The study aimed to investigate the association between dichotomized mHOMR scores (the cohort median score of 0.27 and the developer-recommended score of 0.21) and the risk of death, and whether these could be used to identify patients who may benefit from timely palliative care involvement. RESULTS: Of 269 inpatients, 87 were elective admissions and excluded from further analyses. At the median mHOMR score of 0.27, 91/182 patients (50%) were categorized as high-risk of death within 12 months (mHOMR+), 53 (58%) were referred to palliative care. At the lower cut-off of 0.21, 103 patients were mHOMR+, of whom 57 (55.3%) were referred to palliative care. The higher mHOMR was significantly associated with mortality (29.7% mHOMR- vs. 39.8% mHOMR+ at 12 months, log-rank p < 0.05). The association between the developer-recommended mHOMR cut-off (≥ 0.21) and mortality was not significant (p = 0.15). CONCLUSIONS: A higher mHOMR score was significantly associated with the risk of mortality in patients with advanced cancer. However, the developer-recommended mHOMR cut-off of 0.21 failed to identify a statistically significant difference between patients with advanced cancer at low versus high scores. While mHOMR may be a useful tool to augment clinical judgment and identify inpatients with advanced cancer at high risk of death, who in turn may benefit from referral to palliative care, the optimal mHOMR cutoff may warrant adjustment for this population.