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.

Private sector business interactions with bereaved people: UK Commission on Bereavement secondary analysis.

OBJECTIVES: Evidence suggests that 61% of adults who were bereaved in the past 5 years had difficulties with at least one practical or administrative task following bereavement. We aimed to explore individual's experiences of interacting with private sector businesses following a bereavement. METHODS: Qualitative secondary analysis of data collected via an online survey within the UK Commission on Bereavement. Data from 1133 survey respondents was extracted verbatim, and thematic analysis was carried out. Participants were adults who had experienced a bereavement within the past 5 years and lived in the UK. They were eligible to take part in the survey. RESULTS: Three core themes were developed: (1) needs of bereaved people outside of 'business as usual', (2) admin burden while grieving and (3) the impact and experience of organisational failures. The results of this secondary analysis outline that bereaved individuals often struggle with several points of interaction with private businesses, including facing resistance when making initial contact, insensitive or non-empathetic interactions, facing unrealistic timelines for administrative tasks that are not then returned by the business, and difficulty understanding and completing paperwork. Participants emphasised the difficulty in navigating this while in the initial period following a bereavement. CONCLUSIONS: People experiencing a bereavement experience a high degree of mental load and emotional burden linked with interacting with private businesses following a bereavement. Given that this forms only one element of a person's whole bereavement experience, it is important that changes to policy and practice are made to allow a simple, positive experience for bereaved customers.

Palliative care screening tools and patient outcomes: a systematic review.

BACKGROUND: Palliative care (PC) refers to providing patients with physical, psychological, mental, and other care and humanistic care services in a multidisciplinary collaborative mode with end-of-stage patients and family members as the centre. The PC screening tool (PCST) was developed to identify individuals who may benefit from PC services and is widely assumed to improve patient outcomes. OBJECTIVES: The purpose is to understand which specific PCST has been applied to clinical patients and to analyse and summarise the impact of using these tools on patient outcomes. METHODS: A systematic review of articles published on PCST was performed in PubMed, Web of Science, CINAHL and MEDLINE in January 2024. All original research articles on PCST fulfilling the following eligibility criteria were included (1) utilisation and evaluation of tools was the primary objective and (2) at least one patient outcome was reported. RESULTS: A total of 22 studies were included, 12 studies used a prospective study, 4 studies used a non-RCT and 6 studies used an RCT. The studies were heterogeneous regarding study characteristics, especially patient outcomes. In total, 24 different patient outcomes were measured, of which 16 outcomes measured in 12 studies significantly improved. CONCLUSIONS: We found that the majority of included studies reported that implementing PCST can improve patient outcomes to some extent, especially when used to improve in reducing hospitalisation time and patient readmission rate. However, there is a lack of high-quality research on this widely used screening tool.

[Perceived self-efficacy scale on shared care planning (ACP-SEs) Argentina]. / Escala autoeficacia percibida sobre planificación compartida de la atención (ACP-SEs) Argentina.

INTRODUCTION: Shared care planning (ACP) is a reflective, deliberative and structured process involving the sick person and his or her caring environment. Health professionals recognize barriers to initiating ACP.Perceived self-efficacy is one of the main predictors of success in learning processes. OBJECTIVES: 1) To crossculturally adapt the ACP self-efficacy scale in Spanish for Argentina (ACP-SEs); 2) To explore the reliability and validity of the scale; and 3) To explore self-efficacy in ACP in Argentinean professionals. METHOD: Exploratory instrumental study carried out on health professionals who assist patients with advanced chronic diseases, interdisciplinary through a comprehension test of the ACP-SEs instrument and psychometric validation in a purposive sample of professionals. Sociodemographic variables and previous experience were analyzed. RESULTS: After the comprehension test and linguistic adaptation of the scale through cognitive testing with eight professionals with experience with advanced chronic patients, the ACP-SEs Ar version of the scale was achieved. 236 professionals participated in the exploration, 83% attended patients with advanced chronic disease, 52.9 % were physicians, 52% received informal training in ACP, and 11% had a personal advance directive document. The scale's internal consistency was high (Cronbach's alpha = 0.89). Questions about prognosis, treatment options, goals, treatment preferences, and reassessment of goals of care showed significant differences between physicians and nonphysicians. CONCLUSION: We explored PCA self-efficacy in health professionals with the ACP-SEs Ar scale validated for the first time in Argentina.

Introducción: La planificación compartida de la atención (PCA) es un proceso reflexivo, deliberativo y estructurado. Involucra a la persona enferma y su entorno afectivo. Los profesionales sanitarios reconocen barreras para iniciar la PCA. La autoeficacia percibida es un principal predictor del éxito en los procesos de aprendizaje. Objetivos: 1) Adaptar transculturalmente la escala de autoeficacia percibida en PCA en español para Argentina (ACP-SEs); 2) Explorar la confiabilidad y la validez de la escala y 3) Explorar la autoeficacia en PCA en profesionales argentinos. Métodos: Estudio instrumental exploratorio realizado a profesionales de la salud que asisten pacientes con enfermedades crónicas avanzadas, interdisciplinarios, a través de una prueba de comprensión del instrumento ACP-SEs y la validación psicométrica en una muestra intencional de profesionales. Se analizaron variables sociodemográficas y la experiencia previa. Resultados: Luego de la prueba de comprensión y adaptación lingüística de la escala a través de un test cognitivo con 8 profesionales con experiencia con pacientes crónicos avanzados se logró la versión de la escala ACP-SEs Ar. Participaron en la exploración 236 profesionales, el 83% asistía pacientes con enfermedad crónica avanzada; el 52.9% médicos; 52% recibió formación informal en PCA y 11% tenía un documento de directivas anticipadas personal. La consistencia interna de la escala fue alta (alfa de Cronbach = 0.89). Las preguntas sobre pronóstico, objetivos y preferencias de tratamiento, y reevaluación de los objetivos de cuidados mostraron diferencias significativas entre médicos y no médicos. Conclusión: La escala ACP-SEs Ar demostró propiedades psicométricas adecuadas.

Pattern of admissions and needs assessment for palliative care services among in-patients in a tertiary health facility in South-Western Nigeria.

BACKGROUND: Palliative care evolution focuses on education and medication accessibility. As little as 12% of palliative care needs are met. Assessment of the domains of Palliative care and patients' and families' experience are essential in life-limiting conditions. The Lagos University Teaching Hospital (LUTH), have the National Cancer Centre without offering palliative care services. AIM: The aim was to examine pattern of admissions and needs assessment for palliative services among patients admitted into LUTH wards. MATERIALS AND METHOD: Responses were entered into a data sheet inputted into Epi info version 7.2. Descriptive characteristics of the participants were presented as frequencies and percentages for age, sex, pattern of disease, domains of Palliative care, Advance care Plan, Preparation for home care, death and Education about the illness and category of medical conditions (palliative and non-palliative conditions). Together for Short Lives (TfSL) tool was used to categorize respondents' conditions into Palliative and Non-palliative conditions. Chi-square test was used to determine association between independent variables (pattern of diagnoses, stage of disease, advanced care plan, preparation for home care/ death and education on illness) and dependent variables (category of medical condition). Chi-square test was also used to explore the association between specialty of the managing doctor (independent variable) and Advance care plan (dependent variable). The level of statistical significance was P-value < 0.05. RESULTS: 80.6% of the respondents had palliative care conditions, 83.7% had family members as their caregiver while 13.2% of the participants had no caregiver and 65.9% had no advance care plan. There was no preparation for home care or death in 72.1%, 70.5% had education about their illness, and 68.2% were in the advanced stage of their disease. Participants attending the surgery non-trauma unit (51.6%) were more likely to have advance care plans. Adults were more likely to have palliative care conditions (79.8%) compared to children (20.2%), and was statistically significant. CONCLUSION: Majority of the participants need palliative care services but are unavailable and unmet and the most predominant condition was cancer. Majority had no advance care plan or preparation for home care or death despite having advanced stage of the disease. This survey emphasized the need for symptom management, communication and provision of support.

Non-invasive technology to assess hydration status in advanced cancer to explore relationships between fluid status and symptoms: an observational study using bioelectrical impedance analysis.

BACKGROUND: Oral fluid intake decreases in advanced cancer in the dying phase of illness. There is inadequate evidence to support the assessment, and management, of hydration in the dying. Bioelectrical impedance analysis (BIA) is a body composition assessment tool. BIA has the potential to inform clinal management in advanced cancer, by examining the relationships between hydration status and clinical variables. AIM: BIA was used to determine the association between hydration status, symptoms, clinical signs, quality-of-life and survival in advanced cancer, including those who are dying (i.e. in the last week of life). MATERIALS AND METHODS: We conducted a prospective observational study of people with advanced cancer in three centres. Advance consent methodology was used to conduct hydration assessments in the dying. Total body water was estimated using the BIA Impedance index (Height - H (m)2 /Resistance - R (Ohms)). Backward regression was used to identify factors (physical signs, symptoms, quality of life) that predicted H2/R. Participants in the last 7 days of life were further assessed with BIA to assess hydration changes, and its relationship with clinical outcomes. RESULTS: One hundred and twenty-five people participated (males n = 74 (59.2%), females, n = 51 (40.8%)). We used backward regression analysis to describe a statistical model to predict hydration status in advanced cancer. The model demonstrated that 'less hydration' (lower H2/R) was associated with female sex (Beta = -0.39, p < 0.001), increased appetite (Beta = -0.12, p = 0.09), increased dehydration assessment scale score (dry mouth, dry axilla, sunken eyes - Beta = -0.19, p = 0.006), and increased breathlessness (Beta = -0.15, p = 0.03). 'More hydration' (higher H2/R) was associated with oedema (Beta = 0.49, p < 0.001). In dying participants (n = 18, 14.4%), hydration status (H2/R) was not significantly different compared to their baseline measurements (n = 18, M = 49.6, SD = 16.0 vs. M = 51.0, SD = 12.1; t(17) = 0.64, p = 0.53) and was not significantly associated with agitation (rs = -0.85, p = 0.74), pain (rs = 0.31, p = 0.23) or respiratory tract secretions (rs = -0.34, p = 0.19). CONCLUSIONS: This is the first study to use bioimpedance to report a model (using clinical factors) to predict hydration status in advanced cancer. Our data demonstrates the feasibility of using an advance consent method to conduct research in dying people. This method can potentially improve the evidence base (and hence, quality of care) for the dying. Future BIA research can involve hydration assessment of cancers (according to type and stage) and associated variables (e.g., stage of illness, ethnicity and gender). Further work can use BIA to identify clinically relevant outcomes for hydration studies and establish a core outcome set to evaluate how hydration affects symptoms and quality-of-life in cancer.

Artificial nutrition in cerebrovascular disease, necessity or futility: Case report.

Introduction: Stroke is one of the leading causes of mortality and disability in the world, with clinical manifestations and severe complications that they negatively affect the patient's recovery, contributing to an uncertain prognosis and difficult decisions with bioethical dilemmas such as artificial nutrition in the context of severe stroke. Presentation of the case: A 49-year-old patient with a Cerebrovascular Accident in a chronic vegetative state, tracheostomy, and gastrostomy user, admitted for infectious complications, whom, under therapeutic proportionality, the decision is made, shared by medical staff and family, to withdraw artificial nutrition. Conclusions: Difficult decision-making involves multiple challenges for both the health personnel and the patient and his or her environment. It must be guided by bioethical principles and proportionality in favor of the quality of life and the patient's benefit.

Effectiveness of RF ablation and cementoplasty in enhancing functional capacity in pelvic malignant bone metastases.

PURPOSE: Pelvic and sacral bone metastases cause significant morbidity. The primary aim of the study is to thoroughly evaluate the increase in functional capacity resulting from combined RF ablation and cementoplasty surgery applied to malignant bone metastases of the pelvic bones. METHODS: Twenty patients who underwent RF ablation and cementoplasty for malign pelvic bone and sacrum metastases between January 2014 and December 2021 were retrospectively identified. The inclusion criteria were having a life expectancy of more than 1 month, being > 18 years old, and having at least 1 month of follow-up. The Visual Anlogue Scale (VAS) pain, Karnofsky Performance Status (KP), and Musculoskelatal Tumor Society (MSTS) scores were calculated. RESULTS: VAS pain values decreased, and KP values increased postoperatively (p = 0.006 and p = 0,013). There was no statistically significant increase in MSTS (p > 0.05). The correlation relationships between lesion filling ratio and VAS pain, KP, and MSTS scores were not statistically significant (p > 0.05). Cement leakage was observed in 5 patients (25.0%), and no symptoms related to this leakage were observed. CONCLUSION: The pelvic region, given its close proximity to blood vessels, nerves, and joint areas, along with the distinct challenges associated with its surgery, requires separate evaluation. In studies evaluating applications in the isolated pelvic ring region, as in our study, functional gains have been most comprehensively assessed in this study, demonstrating that the procedure results in significant functional improvements.

Outpatient Pediatric Palliative Care Development: Guidance on Building Sustainable Programs.

Context: As pediatric palliative care (PPC) expands within institutions and nationally, little guidance is available on building outpatient programs. Objectives: We asked outpatient PPC (OPPC) program leaders in the United States about clinic development experiences to gather advice for growing programs. Methods: As part of a larger OPPC study, 48 freestanding children's hospitals with inpatient PPC programs were invited to complete a survey on OPPC. Self-selected participants were sent a follow-up survey soliciting free-text responses about development experiences. Quantitative data were analyzed with descriptive statistics. Qualitative data underwent inductive content analysis. Results: Thirty-six hospitals completed the initial survey, and 28 (78%) reported practicing clinic-based OPPC. Twenty-two of 28 completed program development questions. More than half (12/22, 55%) recommended a minimum total billable full-time equivalent (FTE) ≥3 before expanding into the outpatient setting. About two-thirds (14/22, 64%) suggested a minimum billable FTE ≥4 for 24/7 coverage. Half (50%) reported that their program grew from subspecialty clinics, most frequently hematology-oncology (10/11, 91%). Half (50%) placed initial limits on referrals, with many restricting schedule availability (7/11, 64%). Six of 12 participants (50%) willing to share more about their development experience completed a follow-up survey, from which three themes emerged: program logistics, expectations and boundaries, and establishing role and workflow. Participants focused advice on slow programmatic growth to optimize sustainability. Conclusion: Program leaders offer tangible guidance informed by their OPPC development experience. Future work is needed to leverage this advice within institutions to promote resilient and sustainable PPC growth.

Top Ten Tips Palliative Care Clinicians Should Know About Designing a Clinical Trial in Palliative Care.

The palliative care field is experiencing substantive growth in clinical trial-based research. Randomized controlled trials provide the necessary rigor and conditions for assessing a treatment's efficacy in a controlled population. It is therefore important that a trial is meticulously designed from the outset to ensure the integrity of the ultimate results. In this article, our team discusses ten tips on clinical trial design drawn from collective experiences in the field. These ten tips cover a range of topics that can prove challenging in trial design, from developing initial methodologies to planning sample size and powering the trial, as well as collaboratively navigating the ethical issues of trial initiation and implementation as a cohesive team. We aim to help new researchers design sound trials and continue to grow the evidence base for our specialty. The guidance provided here can be used independently or in addition to the ten tips provided by this team in a separate article focused on what palliative care clinicians should know about interpreting a clinical trial.

Factors Influencing Discharges to Hospice for Patients With Late-Stage Huntington's Disease.

Background: Hospice services for patients with Huntington's disease (HD) are likely beneficial in relieving significant burdens and minimizing costly hospitalizations at the end of life, though there has been little study or clinical guidance on hospice enrollment for patients with HD. Objectives: The primary objective of this study was to identify clinical, sociodemographic, and system-level factors associated with discharges to hospice compared to other dispositions for hospitalized patients with late-stage HD. Methods: These analyses used data from the Nationwide Inpatient Sample between the years 2007 and 2011. Weighted logistic regression with a forward selection approach was performed to identify factors associated with discharge to hospice compared to discharge to home, facility, other locations, and death in hospital. Results: These analyses included 6544 hospitalizations of patients with late-stage HD. There was a significant increasing trend in discharges to hospice over the study period (P < 0.001). After adjustment, multiple clinical, sociodemographic, and system-level variables were identified as being associated with discharges to hospice. Patients with aspiration pneumonia and non-aspiration pneumonias had lower odds of being discharged to hospice compared to dying in the hospital. When comparing to discharges to facilities and home, weight loss and palliative care consultation were associated with greater odds of discharge to hospice. Conclusions: Our findings serve as a foundation for future studies on these factors, and thus help clinician decision-making on when to start advance care planning or end-of-life care for patients with HD. These results also support studies developing hospice referral criteria specific to patients with HD.

Race and Socio-Economic Status Impact Withdrawal of Treatment in Young Traumatic Brain Injury.

CONTEXT: Withdrawal of life-sustaining therapies (WDLST) in young individuals with traumatic brain injury (TBI) is an overwhelming situation often made more stressful by socioeconomic factors that shape health outcomes. Identifying these factors is crucial to developing equitable and goal-concordant care for patients and families. OBJECTIVES: We aimed to identify predictors of WDLST in young patients with 1-TBI. We hypothesized uninsured payment method, race, and co-morbid status are associated with WDLST. METHODS: We queried the 2021 Trauma Quality Improvement Program database for patients <45 years with TBI. Patients with WDLST were compared to patients without WDLST. Multivariable logistic regression (MLR) was performed. RESULTS: 61,115 patients were included, of whom 2,487 (4.1%) underwent WDLST. Patients in the WDLST cohort were older (29 vs 27, P<0.001), more likely to suffer from a penetrating mechanism (29% vs 11%, P<.0001), and have uninsured (22% vs 18%) or other payment method (5% vs 3%) when compared to the non-WDLST cohort. MLR identified age (AOR:1.019, 95% CI 1.014-1.024, P<.0001), non-Hispanic ethnicity (AOR:1.590, 95% CI 1.373-1.841, P<.0001), penetrating mechanism (AOR:3.075, 95% CI 2.727-3.467, P<.0001), systolic blood pressure (AOR: 0.992, 95% CI 0.990-0.993, P<0.0001), advanced directive (AOR:4.987, 95% CI 2.823-8.812, P<.0001), cirrhosis (AOR:3.854, 95% CI 2.641-5.625, P<.0001), disseminated cancer (AOR:6.595, 95% CI 2.370-18.357, P=0.0003), and interfacility transfer (AOR:1.457, 95% CI 1.295-1.640, P<0.0001) as factors associated with WDLST. Black patients were less likely to undergo WDLST when compared to white patients (AOR:0.687, 95% CI 0.603-0.782, P<.0001). CONCLUSION: The decision for WDLST in young patients with severe TBI may be influenced by cultural and socioeconomic factors in addition to clinical considerations.

'There is no such word as palliative care for us at the moment': A mixed-method study exploring the perceptions of healthcare professionals on the need for palliative care in Bhutan.

Background: The need for palliative care is ever-increasing globally. However, it is least developed or not available in most low-and-middle-income-countries including Bhutan. Objective: This study was aimed at exploring the perspectives of Bhutanese healthcare professionals on the need for palliative care in the country. Design: This is a cross-sectional, mixed-method study. Setting/subjects: The study sites included all levels of healthcare in Bhutan and involved doctors, nurses, physiotherapists, pharmacists, health assistants and Drungtshos (traditional physicians). Data were collected through surveys, focus group discussions and in-depth interviews. Results: While the majority of the participants were directly involved in taking care of terminally ill and dying patients, only 14% had received some form of palliative care training for a duration ranging from 1 day to 6 weeks. Ninety-five percent of the participants reported that they faced challenges related to lack of palliative care knowledge and skills; limited resources including analgesics; shortage of doctors and nurses and lack of a palliative care team; issues with low illiteracy and financial challenges among patients; and policies and other systemic issues. The qualitative data generated four major themes: past adverse experiences; unique and complex needs for palliative care; challenges faced while caring for terminally ill and dying patients; and the urgent need for palliative care in Bhutan. Conclusion: Bhutanese healthcare professionals had very limited exposure to palliative care. This study identified a crucial need for palliative care and informs the development of an appropriate palliative care model for Bhutan.

'There is no such word as palliative care for us at the moment': A study exploring the perceptions of healthcare professionals on the need for palliative care in Bhutan Palliative care is least developed in most low-and-middle-income-countries. This study was aimed at exploring the perspectives of healthcare professionals on the need for palliative care in Bhutan. Utilising both quantitative and qualitative approaches, the study sites included all levels of healthcare in Bhutan and involved doctors, nurses, physiotherapists, pharmacists, health assistants and Drungtshos (traditional physicians). Data were collected through surveys, focus group discussions and in-depth interviews. While the majority of the participants were directly involved in taking care of terminally ill and dying patients, only 14% had received some form of palliative care training for a duration ranging from one day to six weeks. Ninety five percent of the participants reported that they faced challenges related to lack of palliative care knowledge and skills; limited resources including analgesics; shortage of doctors and nurses and lack of a palliative care team; issues with low illiteracy and financial challenges among patients; and policies and other systemic issues. The qualitative data generated four major themes: past adverse experiences; unique and complex needs for palliative care; challenges faced while caring for terminally ill and dying patients; and the urgent need for palliative care in Bhutan. Bhutanese healthcare professionals had very limited exposure to palliative care. This study identified a crucial need for palliative care and informs the development of an appropriate palliative care model for Bhutan.

A Systematic Review of Palliative Care Needs in Young-Onset Dementia.

BACKGROUND: The distinctive differences in clinical needs and disease trajectory between persons with young-onset (YOD) and late-onset dementia (LOD) make dementia palliative care unique. Limited studies have reported on the differences in palliative care needs between YOD and LOD, and the optimal time point to introduce palliative care in YOD remains controversial. We performed a systematic review to summarize key issues surrounding palliative care in YOD and highlight unmet needs in this pertinent area. METHODS: Following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines, we searched the PubMed database for all studies published between January 2000 and July 2022 that reported on palliative care in YOD. RESULTS: Of 32 records identified, 8 articles were eligible for inclusion. The top 3 themes extracted centered around (1) clinical differences between YOD and LOD, (2) symptoms and causes of death in end-stage YOD, and (3) the importance of early advanced care planning (ACP). YOD diagnosis is often delayed and persons with YOD have fewer somatic comorbidities but more neuropsychiatric symptoms, longer survival times, and a more malignant disease course. Persons with YOD and their families face unique psychosocial challenges when symptoms start at a younger age. End-stage YOD is not dissimilar to LOD where patients suffer from a broad spectrum of physical and psychological symptoms requiring palliation. Early initiation of ACP discussion is crucial in YOD given the more rapid progression of disease affecting cognition and decision-making capacity; however, rates of ACP completion in YOD remain low. CONCLUSIONS: Given the complex care needs and more rapid disease trajectory in YOD, palliative care in YOD should be considered from the time of diagnosis, and to be incorporated into routine dementia care.

Characteristics Associated With Long-Term Outcomes in Severe COVID-19 Patients After a Post-Acute Care Hospitalization: A Prospective Cohort Study.

OBJECTIVES: To describe characteristics associated with long-term outcomes in severe COVID-19 patients admitted to a post-acute care facility (PACF). DESIGN: Prospective cohort. SETTING AND PARTICIPANTS: Consecutive severe COVID-19 admitted to a PACF from April 2020 to August 2021. METHODS: Patients were followed for 180 days after discharge. Functional outcomes were measured by the modified Barthel index and further stratified into good outcome (for those independent, mildly dependent, or moderately dependent) and into bad outcome (for those severely dependent, completely dependent, or dead). Multivariate binary logistic regression was performed to evaluate between patients' characteristics and long-term outcomes. RESULTS: A total of 186 patients admitted from 17 different acute hospitals were included. Median age was 67 years, 88% of patients were previously independent, 95% were admitted to the ICU, and 85% were mechanically ventilated during the acute hospitalization. Median (interquartile range) Barthel indexes at admission, discharge, and 180-day follow-up were 9 (1-23), 81 (45-92), and 100 (98-100) (P < .001), respectively. In addition, 180-day mortality was 17.2%. Baseline functional status, comorbidities, and functional status at admission to the PACF were associated with bad outcome at 180-day follow-up, after multivariate binary logistic regression. CONCLUSIONS AND IMPLICATIONS: Patients with severe COVID-19 admitted to a PACF had substantial functional improvements at PACF discharge and during 180-day follow-up. These findings may help prognosticate and manage post-acute severe COVID-19 patients.

Bereaved parent preferences on quality end-of-life care for children with cancer in the South.

PURPOSE: The authors sought to understand bereaved family preferences for end-of-life (EOL) care, particularly among Black families and those in the South. METHODS: Semi-structured interviews were conducted with parents of children who died of cancer ≥6 months before at Children's of Alabama. Themes were identified via content analysis. Quotes related to medical intensity, chemotherapy, and location of death (LOD) were scored on 5-point Likert scales, ranging from 1 (comfort care, chemotherapy, or home death) to 5 (medically intense care, avoidance of chemotherapy, or hospital death). RESULTS: Twenty-seven bereaved parents (12 Black) were interviewed. Children died at a mean of 13.1 years (SD = 6.1 years) and a median of 3 years before the interview (range = 1-12 years). Ten children (42%) had central nervous system tumors and the majority (63%) died in the hospital. Family decision-making involved maintaining hope, not causing harm, doing what was best for their child and themselves, and religious beliefs. There was no clear preference for home versus hospital death (3.0 [1.8-4.0]). Instead, parents considered their child's desires and/or medical needs, siblings, and prior experiences with death. To have a comfortable death, parents highlighted the need for comprehensive education about their child's EOL, a caring and comfortable environment, and 24/7 access to their care team. Families expressed a dual preference for comfort care (1.8 [1.3-2.8]) and chemotherapy (3.5 [2.7-4.1]) at EOL. CONCLUSIONS: Families did not see chemotherapy and comfort care as conflicting goals. They sought quality care emphasizing flexibility, quality time with their child, and open access to their care team, regardless of LOD.

Exploring Misconceptions of Palliative Care Among Patients With Hepatocellular Carcinoma: A Pilot Study.

BACKGROUND: Hepatocellular carcinoma is a burdensome form of liver cancer with an increasing global prevalence. Emerging evidence has shown that early palliative care introduction at diagnosis of any life-limiting illness improves patient and carer outcomes. Despite this, patients with hepatocellular carcinoma usually receive palliative care late. These patients are important stakeholders in the provision of palliative care, but their perceived barriers regarding its delivery are poorly defined. AIM: This pilot study aimed to identify the barriers perceived by patients to integrating palliative care into the hepatocellular carcinoma treatment algorithm. DESIGN: Patients living with hepatocellular carcinoma undertook semi-structured interviews about their perceptions of palliative care. We compared these perceptions before and after providing a brief explanation of palliative care. Interview data was inductively coded in NVivo 12 (2018) and thematically analysed. RESULTS: Twenty-one patients were interviewed. 16 perceived palliative care to mean end-of-life therapy, and nine participants had no prior knowledge of palliative care. After hearing a definition of palliative care, 17 participants reported changed positive attitudes. Seven participants supported a name change, including four participants who continued to reject palliative care following the explanation due to the negative stigma associated with the term 'palliative care'. CONCLUSION: There is significant misperception about the purpose of palliative care among patients with hepatocellular carcinoma, constituting a barrier to early integration. This can be feasibly addressed with a two-folded educational and renaming initiative to dispel patient misconceptions regarding palliative care. Effective strategies to achieve this should be developed and tested with relevant stakeholders, particularly patients.

The effect of aroma lymphatic tressage on taxane-induced lower-extremity edema in breast cancer patients.

BACKGROUND: Taxanes are effective chemotherapy drugs for breast cancer care, but adverse effects pose a significant challenge in cancer treatment. Taxane-induced fluid retention and lower-extremity edema are two of the important dose-limiting toxicity and result in decreased quality of life (QoL). However, there is no standard of care to alleviate the symptoms. We conducted a clinical study to assess the efficacy of short-term aroma lymphatic tressage therapy (ALTT) in reducing taxane-induced edema in breast cancer patients. METHODS: In this phase 2 clinical trial, patients with edema of CTCAE grade 2 or higher were enrolled and conducted 8 sessions of ALTT. The primary endpoint was to determine the proportion of patients with a reduction in lower extremity circumference of 3% or more before and 6 weeks after starting ALTT. The change in QoL was assessed as the secondary endpoint using QoL questionnaires. RESULTS: A total of 37 breast cancer patients completed the protocol and were analyzed. The median sum of the 3-point circumference (thigh, calf, and ankle) was 230.8 cm (IQR 218-243) in the baseline and 220.2 cm (IQR 212-236) at the end of the study. The average decrease of circumference was 3.8%. About, 23 patients (62%) experienced a circumference decrease of 3% or more. An improvement in every scale of FACT-TAXANE and EORTC-QLQ-C30 was observed when comparing questionnaire results before and at the end of the intervention (P < 0.0001). CONCLUSION: Eight sessions of ALTT over 4 weeks were effective in reducing lower-extremity edema and resulted in improvement of QoL in patients with breast cancer.

An App Platform-Facilitated Collaborative Palliative Care Intervention for Outpatients With Interstitial Lung Disease: A Pilot Randomized Trial.

Rationale: Outpatients with interstitial lung disease often experience serious symptoms, yet infrequently receive palliative care. Objective: To determine the feasibility and clinical impact of a mobile application (PCplanner) in an outpatient setting. Methods: We conducted a pilot randomized controlled trial among adults with interstitial lung disease in a single-center academic clinic. Clinical outcomes included change in Needs at the End-of-Life Screening Tool (NEST) scale between baseline and 3 months as well as frequency of advance care planning discussions and referrals to palliative care services. Results: Observed feasibility outcomes were similar to targeted benchmarks including randomization rates (82.1% vs 80%) and retention (84.8% vs 80%). Mean NEST scores between the intervention and control group were 38.9 (SD, 18.9) vs 41.5 (SD, 20.5) at baseline, 34.6 (SD, 18.9) vs 33.6 (SD, 19.4) at 1 month after clinic visit, 40.5 (SD, 21.6) vs 35.3 (SD, 25.0) at 3 months after clinic visit. Changes in NEST scores between baseline and 3 months showed no difference in the primary outcome (P = 0.481, 95% CI [-8.45, 17.62]). Conclusion: Among patients with interstitial lung disease, a mobile app designed to focus patients and clinicians on palliative care principles demonstrated evidence of feasibility. Although changes in self-reported needs were similar between intervention and control groups, more patients in the intervention group updated their advance directives and code status compared to the control group. Clinical Trial Registration: Palliative Care Planner (PCplanner) NCT05095363. https://www.clinicaltrials.gov/study/NCT05095363.

The impact of surgical intervention on religious coping, psychological well-being, and pain levels in older adult patients: A quasi-experimental study.

AIM: This study aimed to determine the impact of surgical intervention on religious coping, psychological well-being, and pain levels in older adult patients. METHOD: The data of the study, which used a one-group pretest-posttest quasi-experimental design without a control group, was collected between July 1, 2023, - January 30, 2024. Data collection involved the use of a Personal Information Form, the Religious Coping Scale, the Psychological Well-Being Scale, and the Visual Analog Scale. RESULTS: The results revealed a significant increase in psychological well-being and positive religious coping after surgical intervention compared to presurgical levels (p < 0.001). Multiple linear regression analysis revealed that male gender, younger age, enhanced psychological well-being, and positive religious coping were identified as factors contributing to a reduction in postsurgical pain levels. CONCLUSION: The study's results indicate that surgical intervention serves as a significant variable influencing psychological well-being and religious coping among older adult patients.