BMC Palliative Care最新文献

{"title":"Problems and needs in palliative care questionnaire - caregiver form (PNPC-c): a cross-cultural adaptation and validation into Spanish.","authors":"Jaime Martín-Martín, Stella Martín-de-Las-Heras, Pablo García-Pérez, Leticia Rubio, María Dolores Pérez-Cárceles","doi":"10.1186/s12904-026-02166-1","DOIUrl":"10.1186/s12904-026-02166-1","url":null,"abstract":"<p><strong>Background: </strong>Caregivers are the essential mainstay of care for patients under palliative treatment, and they experience problems and needs for which they require support, but these are rarely assessed. The Problems and Needs in Palliative Care questionnaire - caregiver form (PNPC-c) evaluates these issues, but it has not been adapted into Spanish. The aim of this study was to translate, cross-culturally adapt, and evaluate the psychometric properties to validate the PNPC-c into Spanish (PNPC-c SV^®).</p><p><strong>Methods: </strong>The translation and a cross-cultural adaptation of the PNPC-c comprised direct and reverse translation, revision by a Delphi panel and a pilot study. The validation of the psychometric properties of the PNPC-c SV^® instrument were analyzed. The PNPC-c SV^® was validated with a group of 230 caregivers of palliative care patients. A response frequency analysis was performed to identify the 10 main problems and needs among caregivers. An inferential analysis was performed to compare the problems identified between those over and under 50 years of age and between men and women.</p><p><strong>Results: </strong>The PNPC-c SV^® developed led to the reduction of the questionnaire from the initial 67 items to 48 items per section (problems and needs). The main problems reported were continuing their social activities (78.3%) and fear of an unpredictable future (77.3%). The need that required the most attention from caregivers was fear of an unpredictable future (56.1%), followed by not wanting to leave the patient alone (50%). Significant differences were observed in the identification of problems between men and women as well as between caregivers older and younger than 50 years of age. The internal consistency using Cronbach's α was 0.959, with problems and needs presenting a value of 0.907 and 0.940, respectively. The PNPC-c SV^® is a useful tool to assess the problems and needs of Spanish-speaking caregivers of palliative care patients.</p><p><strong>Conclusions: </strong>Mapping the problems and needs of caregivers allows planning and organizing effective care services, thereby improving the quality of life of caregivers and patients.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"25 1","pages":""},"PeriodicalIF":3.7,"publicationDate":"2026-07-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13689131/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149240099","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Experiences, barriers and enablers of stroke end-of-life care: a systematic review with mixed-methods synthesis.","authors":"Clare Gordon, Catherine Harris, Christopher Burton, Bee Wee, Catherine Davidson, Mehrunisha Suleman, Damian Jenkinson, Nikola Sprigg, Alison Rouncefield-Swales, Andrew Clegg, Caroline L Watkins, Catherine Elizabeth Lightbody","doi":"10.1186/s12904-026-02211-z","DOIUrl":"10.1186/s12904-026-02211-z","url":null,"abstract":"<p><strong>Background: </strong>Despite advances in stroke care, 12% of patients die within 30 days of stroke highlighting the requirement for high-quality end-of-life care (EoLC) within stroke services. EoLC aims to improve the quality-of-life of patients facing death whilst also supporting their families. EoLC after stroke can be difficult due to complex stroke-specific challenges and little clinical guidance. There is a lack of knowledge and understanding of current provision of poststroke EoLC and the barriers and enablers to quality EoLC. Therefore, the aim of this review was to identify the experiences, expectations, information needs and communication preferences of staff, patients and their families and loved ones regarding hospital-based EoLC after stroke.</p><p><strong>Methods: </strong>A systematic review and synthesis of research published between 2007-2023, updating and extending the 2007 review by Stevens et al. [1]. Eligibility: primary research studies; reporting the views and experiences of staff, patients and/or their families; EoLC provided to adult hospital patients with ischaemic stroke or primary intracerebral haemorrhage; EoLC provided within 30-days post-stroke; qualitative, mixed method and quantitative studies; published in English from 2007 onwards. MEDLINE, CINAHL, PsycINFO, Cochrane and EMBASE databases were searched up to November 2023.</p><p><strong>Results: </strong>A total of 28 studies were included. Most were conducted in high-income countries, predominately within hospital based services in Europe (n = 19) and North America (n = 7). Two studies were conducted in middle-income countries and none in low-income countries. Three studies used mixed methods; 13 qualitative, and 12 quantitative. Most data were from healthcare staff (n = 708), four studies included patients' (n = 367) views and experiences and nine studies included n = 251 next-of-kin. Data synthesis identified three themes describing the barriers and enablers to the delivery of effective EoLC, which can be used to support improvements in practice: 1. recognising dying within the context of uncertainty; 2. navigating relationships between staff and families; and 3. the lived experience of the stroke unit environment.</p><p><strong>Conclusions: </strong>Stroke unit EoLC is shaped by interconnected dimensions of recognising dying, prognostic uncertainty, and the culture and environment of care delivery. Limited progress in research since 2007, particularly in relation to patient-reported experiences and intervention development, underscores the need for renewed research focus to inform best practice and enhance support for patients and families.</p><p><strong>Trial registration: </strong>PROSPERO [CRD42020212895].</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"25 1","pages":""},"PeriodicalIF":3.7,"publicationDate":"2026-07-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13689126/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149240082","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"\"I live my own life\": relationship between will to live and wish to die in nursing home residents and their opinions about actions to promote their will to live.","authors":"Samira Ruedin, Laura Jones, Eve Rubli Truchard, Gian D Borasio, Ralf J Jox, Marc-Antoine Bornet, Mathieu Bernard","doi":"10.1186/s12904-026-02238-2","DOIUrl":"10.1186/s12904-026-02238-2","url":null,"abstract":"<p><strong>Background: </strong>The will to live (WTL) is a crucial marker of nursing home residents' subjective psychological state. Previous studies have indicated that nursing home residents express a relatively strong WTL, and the link with their wish to die (WTD) is ambiguous. There is a lack of literature exploring nursing home residents' experiences of the co-existence of WTL and WTD and whether and how residents want their WTL to be enhanced. This study aimed to explore (i) the link between WTL and WTD in nursing home residents, (ii) their opinions about support to improve their WTL, and (iii) their suggestions for interventions to achieve this goal.</p><p><strong>Method: </strong>Participants were nursing home residents aged 70 + living in a nursing home for ≥ 1 month, who maintained decision making capacity. Intensity of WTL and WTD was measured with a single-item numerical rating scale (0 to 10). Semi-structured interviews were conducted to explore residents' opinions about WTL interventions.</p><p><strong>Results: </strong>One hundred and nineteen residents participated in the study. Results showed a significant negative association between WTL and WTD (r=-.58, p=.001), and insights into this relationship are provided through the analysis of qualitative data. 49% expressed that they did not want interventions to support their WTL; 39% were favorable to interventions, and 9% had reservations about accepting such interventions. Regardless of their desire for intervention, most participants provided suggestions regarding the mechanisms through which such interventions could increase WTL: (i) increasing quality human contact, (ii) reducing pain and disability, (iii) facilitating personalized activities, (iv) promoting adaptive institutions with caring and trained staff, (v) promoting opportunities to contribute to others and society and (vi) strengthening their own attitude and levers.</p><p><strong>Conclusion: </strong>Overall, this study provides a better understanding of the relationship between WTL and WTD, their coexistence, and of the subjective needs and concerns in older nursing home residents, thus providing insights into ways to improve their care and, where desired, their WTL.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"25 1","pages":""},"PeriodicalIF":3.7,"publicationDate":"2026-07-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13685087/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149229155","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Added value of a specialized mobile palliative care team compared to the usual care in the primary care setting of Croatia: a 3-month prospective cohort study.","authors":"Mirjana Huić, Darija Erčević, Eszter Saghy, Renata Grenković, Romana Tandara Haček, Maja Vajagić, Sanja Predavec, Marcell Csanádi, János G Pitter, Marta Čivljak, Tina Poklepović Peričić, Livia Puljak, Ana Utrobičić, Maureen Rutten-van Mölken, Antal T Zemplényi","doi":"10.1186/s12904-026-02239-1","DOIUrl":"https://doi.org/10.1186/s12904-026-02239-1","url":null,"abstract":"<p><strong>Background: </strong>Croatia has been implementing a Mobile multidisciplinary specialist palliative care team (MMSPCT), a home-based specialized palliative care service at the primary healthcare level since 2011. This study aimed to evaluate whether a MMSPCT performs better than usual care, in terms of health/well-being, experience with care, and cost outcomes.</p><p><strong>Methods: </strong>A 3-month prospective cohort study was performed during 2017-2019. Two cohorts were compared: MMSPCT vs. usual care cohort. Sample size was based on the literature data, ranging 150-200 patients per group. A SELFIE questionnaire with selected standardised instruments was used to assess health/well-being, experience with care, and cost (on four categories: drugs, medical devices, hospitalisation for acute and chronic care), at the beginning (T0), after 1 (T1), and after 3 months (T2). Propensity score weighting using subclassification method was used to reduce selection bias by grouping exposed and control group patients into four subclasses based on similar propensity scores. The average treatment effect on the treated (ATT) was estimated using linear models with propensity score weighing and clustering based on the subclasses of propensity scores. Cost outcome variables were analysed using hurdle models due to zero-inflation in the data.</p><p><strong>Results: </strong>410 palliative care patients were included, 220 in MMSPCT and 190 in usual care cohort; 94 patients (42.7%) vs. 124 (65.3%) completed the study at 3-months follow-up. Baseline characteristics: age, gender and number of health conditions were balanced after propensity score weighting, but not living situation, education level, marital status and smoking. After 1 and 3 months, MMSPCT patients scored significantly better on person centeredness: 0.69 (3.83%) and 1.87 (10.39%) units higher score and compassionate care: 3.33 (2.78%) and 6.14 (5.12%) points more. After 3 months, they scored significantly better on physical (4.1 points more) and emotional functioning (5.18 points more) and had significantly lower measured healthcare costs. More MMSPCT patients died at their preferred place of death (48% vs. 23%).</p><p><strong>Conclusion: </strong>MMSPCT at primary care level may offer added value to palliative patients in Croatia and may result in a net saving in measured healthcare costs. Further clinical research is needed with a longer follow-up period and children's cohorts.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"25 1","pages":""},"PeriodicalIF":3.7,"publicationDate":"2026-07-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149247088","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Palliative Care education in undergraduate pharmacy curricula in Brazil: a descriptive cross-sectional study.","authors":"Ricardo Augusto Dos Santos Silva, Maria Clara Pedrosa Ferreira, Giovana Flora Martine Teixeira, João Pedro Vasconcelos Paolinelli, Alexandre Ernesto Silva, Mariana Linhares Pereira","doi":"10.1186/s12904-026-02218-6","DOIUrl":"10.1186/s12904-026-02218-6","url":null,"abstract":"<p><strong>Background: </strong>Palliative Care is essential for improving the quality of life of individuals with life-threatening conditions. Despite its growing relevance, the education of health professionals in this field remains insufficient. In Brazil, the implementation of the National Policy for Palliative Care reinforces the need to qualify the health workforce. In this context, the present study aimed to analyze the availability of Palliative Care courses in undergraduate Pharmacy programs in Brazil, as well as to characterize their content.</p><p><strong>Methods: </strong>This is a cross-sectional, descriptive, documentary analysis study, based on data identifying active Pharmacy programs in Brazil as of April 2025. Higher Education Institutions with recognized programs were included, while duplicate, incomplete, or discontinued records were excluded. Data collection was carried out between April and December 2025 by two independent researchers through the analysis of Curricular Matrices and Pedagogical Course Projects available on institutional websites. The variables analyzed included type of institution, geographic location, and course characteristics, and were described using descriptive statistics.</p><p><strong>Results: </strong>A total of 608 Higher Education Institutions were identified, most of them private and located in the Southeast and Northeast regions. A total of 530 curricular documents were available for analysis, and Palliative Care courses were identified in only four institutions (0.75%), being mandatory in only one. The courses varied in workload, objectives, and content. The content was grouped into the following categories: Humanization and Spirituality, Pharmacist's Role, Multidisciplinary Care Management, and Introduction to Palliative Care.</p><p><strong>Conclusions: </strong>This study highlights the limited availability of Palliative Care education in undergraduate Pharmacy programs in Brazil, showing that only four institutions offer such courses. Given the increasing life expectancy and the consequent rise in chronic disease-related suffering in the coming years, it is both necessary and timely for health professionals to receive basic training in this field. Therefore, expanding the availability of Palliative Care courses in undergraduate health programs in Brazil is essential to better prepare future multidisciplinary teams, in addition to the need to provide education that reflects the Brazilian context.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"25 1","pages":""},"PeriodicalIF":3.7,"publicationDate":"2026-07-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13682036/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149229159","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Associations between gastrointestinal symptoms and coexisting symptoms amongst patients in a palliative care unit: a PCOC-based longitudinal study.","authors":"Ching-Ju Lin, Cheng-Fu Lin, Chun-Li Wang, Ju-En Tsai, Lung-Chun Lee, Pi-Shan Hsu, Wei-Min Chu","doi":"10.1186/s12904-026-02242-6","DOIUrl":"10.1186/s12904-026-02242-6","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Background: &lt;/strong&gt;Gastrointestinal (GI) symptoms are both common and distressing in patients receiving palliative care, however their relationships with coexisting symptoms and clinical factors, including functional status, clinician-rated problem severity, and palliative care phase, remain unclear in hospice ward settings. The Palliative Care Outcomes Collaboration (PCOC) framework enables for standardized daily symptom assessment and longitudinal evaluation. This study aimed to longitudinally investigate the associations between GI symptoms and related symptoms and clinical domains among patients admitted to a hospice ward.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;This retrospective cohort study included 1,008 unique adult patients admitted to the hospice ward of a tertiary medical center in central Taiwan between March 1, 2021 and September 30, 2023. Each patient contributed one hospice ward admission course and was followed from admission until death or transfer to home hospice care. Routine daily PCOC assessments collected throughout the admission course were analyzed longitudinally as repeated measurements within patients. Patients younger than 18 years, those with missing identification information, or those with incomplete PCOC data were excluded. Separate generalized estimating equation (GEE) models were constructed for the appetite, nausea, and bowel domains of the Symptom Assessment Scale (SAS), adjusting for demographic, clinical, functional, and symptom-related variables. Subgroup analyses were performed for cancer and non-cancer patients.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;Amongst the 1,008 patients, the mean age was 68.0 years, with 59.1% being male, and 86.5% having cancer. At admission, mean SAS scores were 2.45 for appetite loss, 1.91 for bowel discomfort, and 0.69 for nausea, indicating that appetite loss was the most prominent GI symptom. Nausea was significantly associated with sleep disturbance, appetite loss, bowel discomfort, and pain, while older age was associated with lower nausea severity. Appetite loss was associated with sleep disturbance, nausea, bowel discomfort, fatigue, pain, greater clinician-rated \"other\" and family problems, as well as deteriorating phase; referral from the general ward was associated with lower appetite distress. Bowel discomfort was associated with appetite loss, nausea, breathlessness, fatigue, pain, higher clinician-rated \"other\" problems, and higher Australia-modified Karnofsky Performance Status (AKPS). Subgroup analyses showed that symptom associations were generally more extensive in cancer patients than in non-cancer patients, particularly for appetite loss and bowel discomfort.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusion: &lt;/strong&gt;GI symptoms in hospice ward patients are closely linked to coexisting symptoms, functional status, clinician-rated problem severity, and palliative care phase, and should not be assessed in isolation. Daily standardized assessment using the PCOC framework may help support m","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"25 1","pages":""},"PeriodicalIF":3.7,"publicationDate":"2026-07-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13681850/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149225322","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Palliative care training for healthcare professionals in ethnic minority regions of China: a qualitative study of training needs, barriers and practice translation.","authors":"Hongzhi Wang, Xiangjie Lyu, Xiaogang Wang, Ming Lu, Yinshan Tang, Luping Dong, Xin Xiang","doi":"10.1186/s12904-026-02249-z","DOIUrl":"10.1186/s12904-026-02249-z","url":null,"abstract":"<p><strong>Background: </strong>Palliative care training is essential for strengthening workforce capacity, yet little is known about training needs, barriers, and practice translation in ethnic minority regions. In China, these regions are often marked by cultural diversity, geographical remoteness, limited resources, and uneven health-system capacity, all of which may shape how palliative care training is accessed, delivered, and used in practice. This study explored palliative care training needs, barriers, and practice translation across multiple ethnic minority regions in China.</p><p><strong>Methods: </strong>A qualitative study was conducted using focus group discussions in nine ethnic minority regions of China between January 2024 and March 2025. Purposive sampling was used to recruit 65 participants from seven stakeholder groups, including healthcare professionals, hospital teaching directors, trainers, researchers, hospital managers, primary healthcare managers, and policy makers. Eight mixed-stakeholder focus groups were conducted. Data were analysed using reflexive thematic analysis.</p><p><strong>Results: </strong>Four interrelated themes were identified. First, access to training was constrained by structural factors, including limited opportunities, uneven distribution of resources, workforce shortages, and weak institutional and policy support. Second, existing training was often poorly aligned with local realities, having been developed largely for mainstream settings and insufficiently adapted to local cultural, linguistic, religious, and service contexts. Third, training was difficult to translate into routine practice because of weak service conditions, limited multidisciplinary support, and the absence of sustained organisational reinforcement.Fourth, participants identified training needs for culturally responsive, practice-oriented, and locally grounded capacity-building approaches, supported by local trainers, local teams, and longer-term reinforcement mechanisms.</p><p><strong>Conclusions: </strong>Palliative care training needs and barriers in ethnic minority regions of China extend beyond limited training provision alone. They are shaped by the intersection of structural constraints, inadequate contextual adaptation, and difficulty translating learning into practice. Strengthening training in these settings will require more than expanding course provision; it will require culturally responsive, practice-oriented, and sustained forms of local capacity building. These findings may also inform palliative care training development in other resource-constrained, culturally diverse, and remote settings.</p><p><strong>Trial registration: </strong>Not applicable.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"25 1","pages":""},"PeriodicalIF":3.7,"publicationDate":"2026-07-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13675994/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149217165","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Evaluation of hospice and palliative care policies in China: a Theme-Instrument-Effectiveness (TIE) framework based on text analysis.","authors":"Xinran Li, Lu Ke, Shuai Zheng, Haoran Qu, Jingkai Yue","doi":"10.1186/s12904-026-02236-4","DOIUrl":"10.1186/s12904-026-02236-4","url":null,"abstract":"<p><strong>Background: </strong>China is undergoing rapid population aging, which has substantially increased the demand for hospice and palliative care (HPC). Systematic and quantitative evaluation of China's HPC policy corpus remains limited. This study addresses this gap through an integrated three-dimensional analytical framework examining policy themes, policy instruments, and text-based policy effectiveness.</p><p><strong>Methods: </strong>A corpus of 95 national-level, provincial-level, and selected sub-provincial pilot HPC policy documents (January 2011-May 2026) was analyzed using a Theme-Instrument-Effectiveness (TIE) framework combining three approaches: (1) Latent Dirichlet Allocation (LDA) topic modeling optimized by coherence score and perplexity, with labels reviewed by two independent coders until consensus; (2) NVivo-assisted content coding with substantial inter-coder reliability for policy-instrument coding (Cohen's κ = 0.75); and (3) a Policy Modeling Consistency (PMC) Index Model applied to 28 analytically representative policies across nine dimensions using binary coding with equal-weight aggregation.</p><p><strong>Results: </strong>Eight latent topics were identified, covering cancer prevention and control, digital economy, medical and health care, medical insurance management, elderly health, elderly care services, hospice and palliative care, and population development. Equity-oriented themes concerningrural elderly care, disabled and dementia elderly groups, grassroots service accessibility, rare disease prevention and treatment, and regionally balanced medical-resource allocation were not represented as standalone topics. Content coding of 1,784 coded text segments revealed a supply-dominant instrument structure (supply-side: 51.18%; environment-side: 29.99%; demand-side: 18.83%), with public awareness (1.01%) and financial support (2.86%) being the least-used subcategories. PMC evaluation yielded a mean score of 6.73 (Excellent); Policy Instruments (X4 = 0.98) and Policy Objectives (X5 = 0.87) performed strongest, while Policy Timeliness (X2 = 0.33) and Policy Perspective (X3 = 0.60) received comparatively lower scores, although the uniform X2 score was partly attributable to its operational definition.</p><p><strong>Conclusions: </strong>China's HPC policy system has established a broad institutional foundation but retains structural gaps in equity coverage and instrument balance. Future policies should strengthen legal safeguards, rebalance instruments toward demand- and environment-side mechanisms, expand coverage of underserved populations, and embed performance evaluation provisions to improve the internal coherence, operability, and accountability of policy texts.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"25 1","pages":""},"PeriodicalIF":3.7,"publicationDate":"2026-07-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13681818/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149225272","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"End-of-life experiences: a multicenter longitudinal study on characteristics and prevalence in terminally ill patients.","authors":"Taís Oliveira da Silva, Bianca Sakamoto Ribeiro Paiva, Bruce Greyson, Alexander Moreira-Almeida","doi":"10.1186/s12904-026-02244-4","DOIUrl":"10.1186/s12904-026-02244-4","url":null,"abstract":"<p><strong>Background: </strong>Evidence suggests that transcendent end-of-life experiences (ELEs) are common and impact the dying; however, there is a shortage of longitudinal studies.</p><p><strong>Objectives: </strong>To evaluate the prevalence and characteristics of ELEs in terminally ill patients.</p><p><strong>Methods: </strong>This multicenter longitudinal mixed‑methods study collected demographic, clinical, and ELE‑related data-including prevalence, content, and comfort/distress ratings-from patients with a Palliative Performance Scale (PPS) ≤ 50% across three palliative care units in Brazil. Data were gathered through repeated interviews until death, discharge, or ongoing hospitalization by the study's end. Descriptive statistics were performed.</p><p><strong>Results: </strong>Among 85 patients, 52% were female (44) and mean age was 61 (range 28-93); religiosity/spirituality was common (63% moderately/very religious, 98% believed in God, 65% in afterlife). Functional status declined progressively during follow‑up, with mean PPS decreasing from approximately 40 early in observation to 10 near death. ELEs were reported across varying levels of impairment. Of these patients, 34% experienced ELEs, with a median interval of 29.5 days from the first ELE to death (range: 1-186 days). Nearly half of the ELEs (49%) occurred during sleep, and 80% were perceived as real. The majority of ELEs involved deceased loved ones (52%), with 36% being described as comforting and 27% as distressing. Additionally, 78% of ELEs were reported by non-delirious patients.</p><p><strong>Conclusions: </strong>ELEs exhibited consistent patterns in timing, phenomenology, and content, supporting the possibility that they represent an inherent feature of the dying process. Cultural and psychosocial contexts may shape both the interpretation of ELEs and their emotional valence.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"25 1","pages":""},"PeriodicalIF":3.7,"publicationDate":"2026-07-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13678902/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149220734","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Healthcare professionals and relatives in shaping the preferred place of end-of-life care and death for patients with advanced cancer: the WhereToCare qualitative study.","authors":"Amandine Ferreux, Léon Breuillot, Florent Schepens, Florence Mathieu-Nicot, Mathilde Giffard","doi":"10.1186/s12904-026-02225-7","DOIUrl":"10.1186/s12904-026-02225-7","url":null,"abstract":"<p><strong>Background: </strong>Although most people in France wish to die at home, the majority of deaths still occur in hospitals. The choices of end-of-life care for patients with advanced cancer and how these preferences are shaped by interactions with relatives and healthcare professionals, remains poorly understood. This study aimed to explore how patients with advanced cancer develop and adjust these preferences, and to examine the roles of relatives, general practitioners, and oncologists in this process.</p><p><strong>Methods: </strong>We conducted a single-centre longitudinal qualitative study at a French university hospital involving adults with advanced, incurable solid cancers. Participants were invited to take part in up to three semi-structured interviews conducted approximately one month apart. Interviews explored illness trajectory, preferences for place of end-of-life care and death, and discussions with relatives and healthcare professionals. Data were analyzed using thematic analysis.</p><p><strong>Results: </strong>Eleven patients with metastatic solid tumours receiving care at a French university hospital completed at least two interviews between January and November 2023. Findings showed that although relatives were a key source of emotional support, patients deliberately limited their involvement in end-of-life discussions to protect them, resulting in relational distancing. A second layer of isolation concerned general practitioners, who were rarely consulted and not perceived as relevant interlocutors for end-of-life issues due to limited involvement in cancer care. In contrast, oncologists were identified as the main medical references, but primarily as technical experts focused on disease management rather than as professionals to address existential or end-of-life concerns. Consequently, patients often lacked a clearly identified professional with whom to discuss end-of-life preferences, reflecting communicative and decisional isolation. The longitudinal design further showed that these preferences were not fixed but evolved over time, often without a stable interlocutor to support reflection and discussion. When available, palliative care teams, or participation in the research interviews themselves, partially mitigated this gap by offering a space for reflection.</p><p><strong>Conclusion: </strong>End-of-life preferences among patients with advanced cancer are strongly shaped by concerns for relatives, which may lead to limitations in discussions and contributes to a sense of isolation, with no clearly identified professional responsible for addressing these issues. Earlier, more proactive multidisciplinary involvement may help create spaces for reflection and support the expression of patients' wishes.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"25 1","pages":""},"PeriodicalIF":3.7,"publicationDate":"2026-07-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13679197/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149225249","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}