Palliative Care and Social Practice最新文献

{"title":"Supporting homecare workers to provide palliative and end-of-life care: A scoping review of interventions and their implementation.","authors":"Lesley E Williamson, Annika Dhawan, Fatima Mujtabah, Ai Qi Katrina Yeung, Monica Leverton, Katherine E Sleeman, Abigail Burgess, Clare Ellis-Smith, Catherine J Evans","doi":"10.1177/26323524261467434","DOIUrl":"10.1177/26323524261467434","url":null,"abstract":"<p><strong>Background: </strong>Social homecare workers provide care to enable people to live as independently as possible in their own homes. They play a central role in supporting palliative and end-of-life care but often encounter challenges and can feel disempowered.</p><p><strong>Objectives: </strong>We aimed to scope the evidence on interventions to support homecare workers' provision of palliative and end-of-life care, and the contextual factors that influence their implementation.</p><p><strong>Eligibility criteria: </strong>Papers were included if they reported primary research of any design, evaluating any intervention supporting homecare workers to provide palliative and end-of-life care.</p><p><strong>Sources of evidence: </strong>We systematically searched four bibliographic databases and supplemented this with reference chaining and grey literature searching.</p><p><strong>Charting methods: </strong>Using a qualitative content analysis, we deductively mapped data against the four contextual domains of the Practical Robust Implementation and Sustainability Model.</p><p><strong>Results: </strong>We found 13 papers reporting interventions to support homecare workers to provide palliative and end-of-life care, of which only seven described contextual factors that influence their implementation. The most common intervention type was training, and most cited contextual factors related to homecare workers' perspectives of the intervention. Characteristics relating to homecare workers' schedules and agency staff turnover were also described as influencing implementation of interventions. However, few reported the influence of the perspectives or characteristics of managers, people receiving homecare, and families. Only two of the seven papers mentioned the influence of the external environment or infrastructure to promote implementation and sustainability of interventions.</p><p><strong>Conclusions: </strong>The scarcity of evidence on interventions and their implementation is a missed opportunity to support the homecare sector's response to increasing demand for community-based care and reduced hospital deaths. Better understanding of how the workforce can be supported to provide palliative and end-of-life care, in a sustainable way, would help facilitate high-quality care at home for people approaching the end of life.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261467434"},"PeriodicalIF":2.7,"publicationDate":"2026-08-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13438218/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148680368","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Professional value of the advanced palliative and hospice social work certification: Findings from a national survey of palliative social workers.","authors":"Arden O'Donnell, Victoria Leff, Chad Reilly, Myra Glajchen","doi":"10.1177/26323524261473938","DOIUrl":"10.1177/26323524261473938","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Background: &lt;/strong&gt;The Advanced Palliative Hospice Social Work Certification (APHSW-C) is the first exam-based credential to define and objectively verify standardized competencies for palliative and hospice social workers in the United States. As the certification reaches its first five-year milestone, little is known about how certificants perceive its professional value, impact on professional identity, and recognition by healthcare institutions.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Objectives: &lt;/strong&gt;To examine how those holding the APHSW-C perceive the certification's impact on their professional identity, interprofessional recognition, institutional support, and career development.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Design: &lt;/strong&gt;A cross-sectional, mixed-methods survey was distributed electronically to all APHSW-C holders (N=844) via the Hospice and Palliative Credentialing Center and supplemented by a single listserv posting.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;The survey instrument included closed-ended items assessing motivations, employer recognition, perceived benefits, exam perceptions, and renewal intentions; open-ended items captured narrative reflections on certification impact. Quantitative data were analyzed descriptively; qualitative responses were thematically coded by three reviewers and integrated with quantitative findings during interpretation.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;A total of 178 certificants responded (21% response rate). Most pursued certification to validate their advanced expertise (94%) and support the professionalization of palliative social work (76%). Respondents reported stronger professional identity and greater interdisciplinary credibility. Employer recognition was variable; fewer than one-third received reimbursement for exam fees, fewer than 20% reported salary increases, and 27% reported no formal recognition. Despite this, two-thirds (67%) planned to renew, citing professional identity and commitment to the field, while those uncertain cited limited institutional benefit, financial burden, or changing career circumstances. Qualitative themes reinforced that certificants view the APHSW-C as both a symbol of advanced practice and a mechanism for advocacy and interprofessional parity, though a persistent gap between professional value and organizational reward was noted.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusion: &lt;/strong&gt;The APHSW-C is perceived by certificants as a meaningful validation of specialty expertise that strengthens professional identity, credibility, and interprofessional standing. However, limited and inconsistent institutional recognition remains a significant barrier, particularly regarding financial support, salary incentives, and career advancement. Realizing the credential's full potential requires aligned action from healthcare organizations, professional associations, educators, and policymakers to formally recognize, reward, and integrate the APHSW-C into workforce structures, reimbursement pathways, and career-ladder framew","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261473938"},"PeriodicalIF":2.7,"publicationDate":"2026-08-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13434874/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148673958","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Sociodemographic differences in long-term survival among children and young people with life-limiting conditions: A 10-year cohort analysis using national health insurance data.","authors":"Seonhwa Lee, Byungmi Kim, Yoonjoo Choi, Eun Jeong Choi, Ji-Ah Kim, Jun Ah Lee, Chung Ho Kim, Bomi Park, Bohyun Park","doi":"10.1177/26323524261474071","DOIUrl":"10.1177/26323524261474071","url":null,"abstract":"<p><strong>Background: </strong>Children and young people (CYP) with life-limiting conditions (LLCs) comprise a clinically heterogeneous population with diverse disease trajectories and survival patterns. However, studies evaluating long-term survival according to disease group and sociodemographic characteristics remain limited.</p><p><strong>Objectives: </strong>We assessed long-term survival patterns among CYP with LLCs and evaluated differences in mortality outcomes according to disease group and selected sociodemographic characteristics.</p><p><strong>Design: </strong>Cohort study.</p><p><strong>Methods: </strong>Using the Korean National Health Insurance database, we identified individuals aged 0-24 years who were newly diagnosed with LLCs between 2011 and 2013. Patients were followed from the date of diagnosis until death or December 31, 2020. Kaplan-Meier survival analyses and Cox proportional hazards models were used to evaluate long-term mortality outcomes according to disease groups and sociodemographic indicators, including insurance premium-based income categories and residential area.</p><p><strong>Results: </strong>In total, 175,813 CYP with LLCs were included. Survival patterns differed significantly across disease groups, age groups, and income levels. Disease group distribution varied by age, with premature and neonatal conditions predominating in infancy. Survival probabilities were lowest among children aged < 1 year and among medical aid beneficiaries. Premature and neonatal disorders and cardiovascular diseases were associated with the shortest observed survival durations. Male patients demonstrated a higher hazard of death from cancer (hazard ratio [HR] 1.83), metabolic diseases (HR 1.61), and neurologic and neuromuscular diseases (HR 1.33) compared to female patients. Higher hazard ratios among medical aid beneficiaries were observed primarily in patients with metabolic, neurologic and neuromuscular diseases, whereas residence-related differences in survival were observed among patients with cardiovascular diseases.</p><p><strong>Conclusion: </strong>Distinct survival trajectories exist across disease groups among CYP with LLCs. Early mortality predominates in premature and neonatal disorders and cardiovascular diseases, whereas more prolonged survival patterns are observed in cancer and neurologic disorders. These findings may inform the development of disease-specific integrated treatment strategies, long-term care planning, and supportive care policies for CYP with LLCs and their families.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261474071"},"PeriodicalIF":2.7,"publicationDate":"2026-07-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13428110/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148654315","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Equipping future physicians to recognize a palliative approach to care: A mixed methods study on palliative care training needs in internal medicine residency.","authors":"Katrin Conen, Ashlinder Gill, Ahmad Hamade, Jinbaek Kim","doi":"10.1177/26323524261474532","DOIUrl":"10.1177/26323524261474532","url":null,"abstract":"<p><strong>Background: </strong>A palliative approach to care emphasizes holistic assessment and treatment planning for individuals with life-limiting illnesses. Despite Canadian national frameworks and competency guidelines, internal medicine (IM) residents often report limited exposure and comfort with palliative care.</p><p><strong>Objective: </strong>The purpose of this investigation is to assess the training needs of IM residents at McMaster University and inform future curriculum development.</p><p><strong>Design: </strong>A sequential mixed-methods design was employed. Both quantitative survey and qualitative interview data were reviewed together to develop recommendations for internal medicine curriculum planning.</p><p><strong>Methods: </strong>Phase 1 included an online survey distributed to post-graduate years (PGY) 1 to 5 IM residents, assessing exposure, comfort, and preferences regarding palliative care education. Phase 2 consisted of semi-structured interviews with PGY4-5 subspecialty residents to explore perspectives in greater depth. Quantitative data were analyzed descriptively, while qualitative data underwent thematic analysis using inductive coding.</p><p><strong>Results: </strong>Twenty-four residents completed the survey. While 54% rated palliative care as \"very important\" to their future practice, only 50% were satisfied with current training. Residents reported comfort with symptom management and communication but discomfort with outpatient resources and discussing artificial nutrition. Interviews with five senior residents revealed appreciation for early exposure and experiential learning but noted barriers such as limited role modeling and scheduling conflicts. Suggestions included mandatory rotations, case-based learning, and integration of community-based care.</p><p><strong>Conclusions: </strong>IM residents value palliative care education and support its integration into residency training. Findings highlight the need for a structured curriculum that balances didactic and experiential learning, addresses identified gaps and promotes longitudinal skill development. Such efforts are essential to prepare future specialists to deliver comprehensive, patient-centered care.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261474532"},"PeriodicalIF":2.7,"publicationDate":"2026-07-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13428151/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148653732","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Death and grief literacy in the context of loneliness: Insights from an international symposium.","authors":"Kerstin Kremeike, Bianca Neumann, David Blum, Allan Kellehear, Kerrie Noonan, Lilith Raza, Francis Seeck, Raymond Voltz, Els Van Wijngaarden, Julia Strupp","doi":"10.1177/26323524261453399","DOIUrl":"10.1177/26323524261453399","url":null,"abstract":"<p><p>Death and grief literacy are increasingly recognised as crucial public health resources for responding to serious illness, dying, death, and bereavement. This critical essay summarises key discussions from a three-day international symposium, \"<i>Fostering Connection in Existential Phases of Life: How Do We Enhance Death and Grief Literacy?</i>\" (July 2025), which brought together experts from palliative care, caring communities, LGBTQ+ advocacy, migration studies, social work, volunteering, and psychosocial support. The symposium did not include members of the general public but focused on academic, clinical, and practice-based expertise. The symposium explored how enhancing death and grief literacy can improve individual and collective responses to loneliness, particularly among marginalised and vulnerable populations who are at higher risk of experiencing loneliness and poorer outcomes in the context of serious illness, dying, and bereavement, and foster deeper connections during life's existential phases. Discussions addressed the relational, communal, and practical dimensions of death and grief literacy; the entanglement of loneliness and desire to die in severe illness; experiences of grief-related loneliness; and the potential of compassionate communities. Outcomes included concrete recommendations for policy, practice, and education, emphasising community-based support, cultural humility, public engagement, and the integration of death and grief literacy into curricula across multiple educational and professional settings, including school curricula, university education, and relevant workplace training programmes. Overall, we argue that strengthening death and grief literacy can shift societies from pathologising loneliness towards shared responsibility, solidarity, and compassionate care at the end of life and during bereavement.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261453399"},"PeriodicalIF":2.7,"publicationDate":"2026-07-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13424771/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148654795","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A primer on artificial intelligence for palliative care educators.","authors":"Jennifer Simoni, Diglio A Simoni","doi":"10.1177/26323524261474075","DOIUrl":"10.1177/26323524261474075","url":null,"abstract":"<p><p>Artificial intelligence (AI) is rapidly being adopted in education in the health care professions, including in palliative care. Yet existing AI primers for health professions education (HPE) are not specific to palliative care (PC) and overlook the relational, prognostic, and cultural sensitivities central to the field. This narrative primer addresses that gap. Informed by a review of the literature, it equips PC educators with practical guidance for responsibly harnessing AI. We first introduce foundational AI concepts relevant to educators and clinicians, including machine learning (ML), large language models (LLMs), generative AI (GenAI) and agentic AI. We then trace a progression from general HPE use, such as study support, assessment, and AI-enhanced simulation, to PC-specific applications in curriculum design, serious-illness communication training, and interprofessional teamwork. Throughout, we situate the risks where they arise, with attention to concerns most consequential for PC: bias, communication integrity and hallucination, data privacy, and over-reliance on AI, in a field where relational, humanistic practice and nuanced communication are central. Guiding principles of ethics, equity, and patient-centeredness anchor the discussion. We close with concrete implications for educators and curriculum development: building AI literacy, establishing governance and appropriate-use policies, and verifying AI-generated outputs against trusted sources. The aim is an educator-AI partnership that safeguards what is essential in PC: compassionate, dignified, patient-centered decision-making and care.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261474075"},"PeriodicalIF":2.7,"publicationDate":"2026-07-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13424772/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148654784","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Changing contexts of death and dying: Influence of the COVID-19 pandemic and voluntary assisted dying legislation on death literacy in Australia.","authors":"Sumina Shrestha, Andrea Grindrod, Sora Lee, Kerrie Noonan","doi":"10.1177/26323524261473623","DOIUrl":"10.1177/26323524261473623","url":null,"abstract":"<p><strong>Background: </strong>The COVID-19 pandemic and the introduction of voluntary assisted dying (VAD) legislation in Australia are major societal exposures that altered the social context around death and dying. Although death literacy is a socially embedded concept, there are limited studies assessing how death-related societal events like COVID-19 and VAD legislation influence its development.</p><p><strong>Objective: </strong>To examine associations of the COVID-19 pandemic and VAD legislation introduction with death literacy, and whether these societal exposures functioned as contextual pathways linking social capital, attitudes, and supportive actions around death and dying with death literacy outcomes. This study assessed death literacy as operationalised by the Death Literacy Index.</p><p><strong>Design: </strong>A cross-sectional national survey.</p><p><strong>Methods: </strong>Participants were recruited through the Online Research Unit from a representative online non-probability panel of 1202 Australian adults, stratified by age, gender, and geographic region. Death literacy was measured using the Revised Death Literacy Index. Multivariate regression examined associations of COVID-19 and VAD legislation with death literacy after adjusting for relevant covariates. Mediation analyses explored whether these societal exposures functioned as indirect contextual pathways linking social factors with death literacy.</p><p><strong>Results: </strong>Of the 1202 participants, 56.4% were female and 43.6% male. Over 40% (483) reported some form of COVID-related experience, while nearly 12% (139) reported experience related to VAD. Multivariate analysis showed that perceived gain of knowledge during the pandemic (B=0.179) and VAD legislation introduction (B=0.319) were positively associated with death literacy, whereas experiencing COVID-related death had a negative association. Social capital, social attitudes toward death, and supportive actions to carers demonstrated significant positive indirect effects, partially mediated by the pandemic and VAD exposure. Personal attitudes toward death showed negative indirect effects.</p><p><strong>Conclusion: </strong>This study highlights the importance of public health palliative care approaches that promote death literacy, especially during public health crises or policy change. Findings reinforce that death literacy does not develop in isolation but is shaped by social environments that enable or limit the exposure, awareness, and engagement to death, dying, and bereavement.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261473623"},"PeriodicalIF":2.7,"publicationDate":"2026-07-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13424500/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148654752","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Building bridges to care: A co-created community palliative care package for resource-limited settings.","authors":"Ngozi Idemili-Aronu, Ikechukwu Alex Okoli, John Oluwaseyi Jemisenia, John Olajide Olawepo, Tonia Chinyelu Onyeka, Jean Hunleth, Karla T Washington, Gregory A Aarons, Echezona Edozie Ezeanolue","doi":"10.1177/26323524261474054","DOIUrl":"10.1177/26323524261474054","url":null,"abstract":"<p><strong>Background: </strong>Palliative care (PC) needs are substantial in Nigeria, yet access to specialist PC services remains limited, particularly in rural and peri-urban communities.</p><p><strong>Objectives: </strong>To co-create an implementation-ready, community-delivered PC package for rural Nigerian settings without PC specialists and specify its components, delivery roles, and referral pathways.</p><p><strong>Design: </strong>Sequential explanatory mixed-methods, participatory co-creation design in which quantitative prioritization informed qualitative refinement.</p><p><strong>Methods: </strong>Participants (health professionals, traditional and religious leaders, patients, caregivers, advocates, and policymakers) used <i>Mentimeter®</i> to generate and rank feasible non-pharmacologic components, followed by an adapted Group Model Building (GMB) process to identify key health-system and sociocultural determinants, specify the most appropriate delivery settings and cadres, and define delivery processes and referral pathways to basic PC providers at facilities. The process included three pre-workshop virtual sessions (n=51) and a 5-day in-person GMB workshop in Enugu, Nigeria (n=45), with diverse participants from all six geopolitical regions recruited via the ICON-3 Practice-Based Research Network. Outputs were refined through participant validation and technical expert review to enhance feasibility and implementation readiness.</p><p><strong>Results: </strong>Participants prioritized effective pain and symptom relief, strengthened communication and shared decision-making, intentional engagement of religious leaders, and improved community-primary care collaboration. The resulting package comprises three components (pain and symptom management, psychosocial support, spiritual care) delivered via a hub-and-spoke model in which CHEWs/CHAs serve as community \"Anchors,\" while facility-based basic PC providers and tertiary specialists provide oversight and manage complex cases. Key barriers included limited training and stigma, medication access constraints, and weak referral systems; proposed solutions emphasized training with supportive supervision, improved medicines access/financing and strengthened referral pathways and community support structures.</p><p><strong>Conclusion: </strong>A participant-designed, task-shared, hub-linked community PC package is feasible in principle for Nigerian settings without PC specialists and provides an implementation-ready blueprint for feasibility testing, adaptation, and scale-up planning.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261474054"},"PeriodicalIF":2.7,"publicationDate":"2026-07-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13424511/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148654810","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Public understanding of palliative care and preferences for place of end-of-life care and death: A national population-based latent class analysis.","authors":"Cecilia Larsdotter, Stina Nyblom, Henrik Imberg, Richard Sawatzky, Joakim Öhlén","doi":"10.1177/26323524261474030","DOIUrl":"10.1177/26323524261474030","url":null,"abstract":"<p><strong>Background: </strong>Dying in the preferred place is associated with improved wellbeing. Preferences may be shaped by personal characteristics, health, prior experiences, and understanding of palliative care.</p><p><strong>Objectives: </strong>To investigate preferences for place of end-of-life care and death in the Swedish adult population and specifically, to identify subgroups characterised by different understanding of palliative care and examine how preferences vary across these subgroups.</p><p><strong>Design: </strong>This study was based on a cross-sectional population-level survey.</p><p><strong>Methods: </strong>A simple random sample of 3,750 16-90-year-old individuals, selected from the Swedish Population Register. Latent class analysis identified distinct subgroups based on participants' understanding of palliative care. Predictors of subgroup membership were examined using multinomial logistic regression.</p><p><strong>Results: </strong>A total of 1,752 individuals responded (48%). Of them, 59.6% preferred end-of-life care at home, and 54.2% preferred home death. Latent Class Analysis identified five distinct subgroups: comprehensive understanding, some understanding, limited understanding, misunderstanding, and no opinion. Comprehensive understanding, such as believing that palliative care supports families and alleviates suffering, was associated with preferences for home or hospice care. Misunderstanding, such as believing that palliative care hastens death, was associated with preferences for hospital or nursing home. The comprehensive understanding group included more women (57.6%), older (mean [SD] age: 57 [18] years), and university-educated individuals (48.2%).</p><p><strong>Conclusion: </strong>Although the most preferred place for both care and death were home, preferences varied across subgroups defined by differing levels of understanding of palliative care and sociodemographic characteristics.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261474030"},"PeriodicalIF":2.7,"publicationDate":"2026-07-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13424512/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148654225","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Characteristics of older people who experience high-cost hospital care at the end of life and report low-satisfaction: Evidence of low-value care from bereaved carer surveys in England.","authors":"Shuang Jin, Irene J Higginson, Anna E Bone, Simon N Etkind, Charles Normand, Peter May","doi":"10.1177/26323524261473936","DOIUrl":"10.1177/26323524261473936","url":null,"abstract":"<p><strong>Background: </strong>A significant proportion of healthcare costs is incurred in hospitals at the end of life (EoL), with a small group of patients accounting for most of the costs. Scarce resources should be allocated based on cost-effectiveness. High costs and low satisfaction with care suggest low-value care at EoL; however, there is little evidence regarding which patients receive such care.</p><p><strong>Objectives: </strong>To identify the characteristics of older patients who experience high-cost care but report low satisfaction with care at EoL.</p><p><strong>Design and methods: </strong>Secondary data analysis of mortality follow-back surveys: International Access, Rights, and Empowerment (IARE) studies. We surveyed the next of kin of older patients who received palliative care or died in hospital in England. Satisfaction with care at EoL and cost of hospital care calculated with quantity of services and unit costs. We used multinomial logistic regression to analyse factors associated with potentially low-value care.</p><p><strong>Results: </strong>404 patients were included (mean [SD] age: 80.4 [8.5] years). During the last three months of life, 53.8% of the total hospital care costs were incurred by 20% of the patients. 36.6% of the respondents reported low satisfaction. Compared to patients with low-cost care and reporting satisfaction, patients who were 65-74 years old (relative risk ratio [RRR] = 3.2, 95% CI: 1.09 to 9.42), had low income (RRR = 4.12, 95% CI: 1.29 to 13.15) and with an illness duration of 1-12 months (RRR = 3.93, 95% CI: 1.37 to 11.21) were more likely to receive high-cost hospital care and report low satisfaction.</p><p><strong>Conclusions: </strong>Being younger, on low incomes and with short illness duration are associated with high-cost, low-satisfaction hospital care at EoL. Identifying underlying mechanisms may enable targeted interventions to reduce high-cost, low-value care. Further investigation is needed to change the care trajectories of patients with these risk factors.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261473936"},"PeriodicalIF":2.7,"publicationDate":"2026-07-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13420044/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148632205","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}