Background Death literacy is the knowledge and skills that enable people to navigate and act on end-of-life issues, and underpins public health approaches to palliative and end-of-life care. Nationally representative evidence on factors associated with death literacy remains limited. Objectives To measure death literacy in adults and examine associations with sociodemographic characteristics and experiential exposure. Design and methods A cross-sectional online survey of a nationally representative United Kingdom (UK) sample (n = 2,106), completing the Death Literacy Index-Revised (DLI-R) and providing sociodemographic and contextual information. Weighted data were analysed using descriptive statistics and linear regression. Results The mean DLI-R score was 6.01 (SD = 1.85). The Experiential Knowledge scale had the highest score (7.15, SD = 1.98), while Accessing Help had the lowest (5.16, SD = 2.64). Compared to no experiential exposure, personal/family exposure (B = 0.69, 95% CI 0.53, 0.85) and professional/volunteer exposure (B = 1.38, 95% CI 1.14, 1.63) were significantly associated with higher DLI-R scores. Adults aged 25–34 scored higher than those aged 65+ (B = 0.45, 95% CI 0.18, 0.71). Compared to the married group, the ‘single and never married’ group (B = -0.61, 95% CI -0.82, -0.41) had lower DLI-R scores. There were ethnic differences in scores, with Black/Black British people found to have higher death literacy compared to the reference group of White/White British people (B = 0.71, 95% CI 0.35, 1.08). Conclusion This study identified gaps in UK death literacy with findings highlighting that death literacy is shaped mostly by personal and professional experience. Public health approaches that promote community learning, and clearer support pathways, may help address these gaps. Further work is needed to identify effective ways to strengthen death literacy at a population level.
Background Enhancing quality of life (QoL) is the primary aim of palliative care and a key endpoint in oncology research. Objective This study aimed to assess the QoL and its association with anxiety, depression, and clinical factors among patients with metastatic cancer attending oncology centers in Northwest Ethiopia. Design A cross-sectional study was conducted among 290 cancer patients with metastasis who were receiving treatment at oncologic centers in Northwest Ethiopia from August to October 2023. Methods Study participants were enrolled using the consecutive sampling method. QoL was measured using the World Health Organization Quality of Life Scale – Brief Version (WHOQOL-BREF). Multiple linear regression analysis was used to identify the determinants of QoL. Variables with a P-value < 0.05 at a 95% confidence interval were considered statistically significant. Results In this study, the mean scores for physical health, psychological health, social relationships, environmental health, and overall QoL were 26.74±10.09, 30.46±12.03, 34.48±13.97, 37.64±14.06, and 31.17±6.51, respectively. The overall QoL had a negative significant association with poor performance status (β = -2.52; 95% CI: -4.35, -0.69), presence of comorbidity (β = -2.46; 95% CI: -4.03, -0.90), depression (β = -3.17; 95% CI: -4.76, -1.59), anxiety (β = -1.99; 95% CI: -3.38, -0.47), and poor social support (β = -2.52; 95% CI: -4.43, -0.61). Conclusion The physical health domain of QoL had the lowest mean score. Poor performance status, the presence of comorbidity, depression, anxiety, and poor social support were the determinants of overall QoL. Hence, it is essential to focus on treatments that enhance physical health, improve poor performance status, manage comorbidities, alleviate depression and anxiety, and strengthen social support.
Background Society often perceives work and private life as separate spheres which leads to uncertainty about issues such as serious illness, dying, death, and grief within workplace settings. Last Aid Courses (LAC) are established to reduce uncertainty and insecurity towards these issues in the public, but not designed for use in the workplace. Objectives To develop an integrated framework specifically designed for the workplace context to foster compassionate workplaces. Methods After performing 102 LAC in different workplace settings, a mixed-methods design was employed, comprising (a) an online survey among participants (n = 611) including closed questions and open free-text questions, and (b) five focus groups with former course participants (n = 24). Results The vast majority of respondents (94.5%) considered both the topics addressed and the conduction of LAC in the workplace as highly relevant. This relevance was reflected in increased confidence in dealing with the subject matter (96,0%) and a high willingness to recommend the course to others (98.3%). Participants expressed the need for stronger integration of workplace-related topics, particularly concerning grief management, communication training, and labor-law-related aspects. The qualitative data revealed three interrelated levels: 1. Personal level: Dealing with those affected, consisting of shared experience, trust, and the impact of grief on employees; 2. Company level: Structural factors, including (a lack of) managerial support, attitude, and established structures; 3. Development level: Conceptual input encompassing characteristics of potential last aiders in the workplace, ideas for institutionalization, best practice, being integrated into the company structure, support for potential future last aiders, and barriers. Conclusion Our findings confirm the high relevance of the topic within workplace settings and demonstrate that LAC enhance confidence in dealing with serious illness, dying, death, and grief. The complexity of the issue highlights that sustainable implementation requires workplace-specific approaches. Personal and structural dimensions are closely intertwined and form part of a framework aimed at strengthening workplace-based confidence in responding sensitively to serious illness, dying, death, and grief.
Background Death literacy is viewed as a resource that enables individuals and communities to navigate the end of life. The Lancet Commission on the Value of Death has recommended its society-wide development. However, to be able to increase death literacy, insight is first needed into the factors that contribute to it. Objectives This study aims to develop an evidence-informed conceptual model of the causal relationships between death literacy, its theorized determinants, and other contributing factors. Design We applied a mixed-methods design, consisting of a scoping review and expert panels. Methods We conducted a scoping review following Arksey and O’Malley’s framework and the PRISMA-Scr guidelines. We searched 5 databases (PubMed, Embase, Web of Science, Scopus, and PsycInfo) for articles reporting on (facets of) death literacy and making quantitative or qualitative causal inferences. Concurrently, we conducted 3 expert panels with academic and experiential experts to identify additional determinants not identified in the literature. Deductive thematic analysis was used. Finally, we built a causal model using the Evidence Synthesis for the Construction of Directed Acyclic Graphs (ESC-DAG) methodology. Results We identified five death literacy determinants at the individual level (lived end-of-life experience, indirect exposure, prior knowledge, end-of-life related attitudes, and social connectedness), three at the environmental level (political context & policy, organizational culture, and external resources), and three contextual variables (cultural norms and sociodemographic and personal characteristics). Conclusion Combining quantitative and qualitative findings, we propose a conceptual causal model visualizing the different pathways to increased death literacy. The model shows the complexity behind death literacy development, highlighting the contribution of factors outside of the individual. It provides a foundation and guidance for future confirmatory research and the development of interventions to increase death literacy.
Background The increasing availability of voluntary assisted dying (VAD) signifies a major shift in how communities perceive and experience death. Access to VAD can be seen as a new step in the shared meaning-making through which communities respond to death and dying and a new opportunity to engage communities in developing death literacy. The Australian Capital Territory (ACT) VAD legislation took effect in late 2025. Objectives This paper describes the initial co-creation of a multi-phase project (Getting Ready) seeking to develop end-of-life choices education in partnership with ACT communities. Design A co-creation process involving researchers, healthcare and community organisations and community members. Methods A participatory action research paradigm was used. This supported a local approach to co-creation developed in accordance with the principles and stages described by Vargas et al. and Roper et al. Results Key resources and communities including priority populations with structural vulnerabilities were identified. Inter-relationships and shared values between communities were analysed and utilised to support the fostering of connections. The scope of the collaboration and key contributors to safe engagement were defined. Specific approaches to supporting community participation in Getting Ready were designed, including the development and training of community facilitators to support priority population involvement in the project. Conclusion Co-creation is a useful mechanism to enable community engagement with the development of projects and resources focused on end-of-life choices education. These approaches support the inclusion of priority populations in death literacy research and resource development. Death literacy is a safe and useful concept to explore within community education development in an environment where VAD has been recently legislated.
Background Allied health clinicians need strong death literacy to navigate loss, grief, dying, and death. Their roles include system navigation, advocacy, and psychosocial support, often bridging healthcare, community, and social services. Adequate death literacy is essential for holistic, compassionate care. This study assessed death literacy among allied health clinicians in the Central Coast region of New South Wales, Australia. Methods An anonymous, cross-sectional online survey conducted between February and March 2025 collected demographic, professional, and 29-item Death Literacy Index–Revised (DLI-R) data. Subsequent analyses compared overall and subscale death literacy scores across Central Coast allied health disciplines and against published Australian norms for the (a) general population, (b) health professionals, and (c) end-of-life and bereavement care volunteers. Results A total of 144 allied health clinicians completed the survey, including nutrition and dietetics, physiotherapy, podiatry, psychology, occupational therapy, speech pathology, social work, oral health, counselling, allied health assistants, and other disciplines. There were significant differences in the overall death literacy scores across allied health disciplines, with differences in mean scores ranging from 0.280 to 1.238 (p < 0.01). These differences extended to most subscales; however, after adjusting for potentially confounding characteristics, only social work remained significantly different from the “other” group in overall scores. Subscale differences persisted, including higher hands-on care scores in physiotherapy and occupational therapy, and higher factual and community knowledge scores in social work, compared with the “other” group. Overall, allied health clinicians’ death literacy (mean = 5.671) was significantly higher than Australian Online Research Panel norms for the general population (mean = 4.830; p < .001); and lower than health professionals (mean = 6.510; p < .001); end of life care volunteers (mean = 6.640; p < .001); and grief and bereavement care volunteers (mean = 6.590; p < .001). Conclusion Allied health clinicians appear to hold some discipline-specific strengths in death literacy subscales. Although overall death literacy was higher than that of the general population, it remained lower than that of health professionals, end-of-life care volunteers, and volunteers in grief and bereavement. These findings highlight gaps in allied health workers’ ability to understand, access, and act on end-of-life care options.
Background: The provision of community-based palliative care is widely recognized as an effective strategy for improving the end-of-life care. Given that both national and international policies increasingly advocate the integration of community-based palliative care programs into broader public health systems, those programs that are often rooted in grassroots movements and mostly run through informal volunteer networks are expected to move toward greater formalization. Objectives: This study aims to understand how individuals involved in community-based palliative care perceive the movement toward formalizing volunteer work and to identify the opportunities and potential challenges of formalizing community-based palliative care. Design: This study employed an ethnographic design grounded in qualitative research methods. Methods: Data were collected during 8 months of ethnographic fieldwork in Jakarta, the capital of Indonesia, in 2022, with a follow-up visit in 2023. The fieldwork entailed prolonged participant observation, focus group discussions, and semi-structured interviews with 14 palliative care volunteers and 6 NGO workers. Results: This study reveals that palliative care volunteers hold diverse perspectives on the definition of formalization, ranging from the introduction of visible markers (e.g., uniform and identity cards), to the establishment of institutional features (e.g., financial incentives, recognition within the health system, and administrative structures). The opportunities associated with formalization include strengthening volunteers’ legitimacy and recognition in the health system and increased financial rewards. The challenges include concerns about its impact on the spiritual and altruistic nature of volunteer work, increased bureaucratic responsibilities, changes to existing care practices, and concerns about navigating the language of palliative care. Conclusion: As community-based palliative care becomes increasingly formalized, it is important to understand how this process unfolds across different regions and cultural contexts, and to identify strategies to preserve the unique strengths of volunteer-based care as these formal structures are introduced.
Background In 2015, an estimated 16.4 million people in low-and-middle-income countries (LMICs) died with serious health-related suffering requiring palliative care. Yet access to palliative care remains limited in LMICs, where the gaps are greatest. Home-based palliative care (HBPC) has been shown to improve access, enhance quality of life and reduce costs. However, evidence on implementing HBPC across the diverse contexts of LMICs remains scarce. Aim To identify which strategies, in which contexts, trigger which mechanisms to produce successful implementation outcomes for HBPC in LMICs. Data sources and Methods Following RAMESES standards, we conducted a realist review to refine an initial programme theory developed through WHO documentation and the CFIR. We searched six databases (MEDLINE, PsycINFO, CINAHL, EMBASE, Global Health, and CENTRAL) for home-based palliative care in LMICs. Evidence was selected based on relevance, richness, and rigour, using 17 “if-then” statements to synthesise Context-Mechanism-Outcome-Configurations (CMOCs). Results In LMICs, patients with advanced illness and caregivers experience substantial multidimensional unmet needs within health systems that are underfunded and fragmented. We identified five CMOCs in which HBPC was found to be acceptable, feasible, and sustainable. (1) Community engagement: Programmes that actively engaged community members and local civil organisations reduced stigma surrounding palliative care, strengthened collective ownership, and improved programme acceptability and sustainability. (2) Volunteer involvement: Training community-rooted caregivers created trusted bridges between services and families, enhancing volunteer commitment and long-term viability. (3) Nurse leadership: Empowering nurses through training and expanded roles increased professional confidence and trust from patients and families, supporting delivery in resource-constrained settings. (4) Multidisciplinary team: Collaborative team care alleviated feelings of abandonment, fostered hope and reciprocity; encouraged patients and families to contribute back to programmes. (5) Holistic and uninterrupted support for caregivers: Continuous and holistic support for family carers improved confidence in home caregiving and enabled end-of-life care at home. Conclusion Shared contextual similarities across LMICs suggest these components could support HBPC implementation in diverse resource constrained settings and potential for cross-national learning. To maximise successful implementation, investment for HBPC should prioritise enhancing community capacity and developing nurse leadership within the team care model.
Background:The majority of deaths worldwide are attributable to non-communicable diseases, with approximately four-fifths occurring in low- and middle-income countries. Chronic Obstructive Pulmonary Disease (COPD) is currently the fourth leading cause of mortality globally and is projected to become the third leading cause by 2030. Objectives:Our objectives were to: (1) determine the self-reported burden of palliative care-related symptoms and concerns (social, spiritual, psychological, physical), and (2) identify predictors of burdensome symptoms and concerns among adults with COPD attending primary care services in South Africa (including social support). Methods:A cross-sectional survey was conducted across eight primary care facilities in the Western Cape. Sociodemographic data (age, sex, smoking status, and number of missed medication doses in the preceding seven days), clinical data, peak expiratory flow (PEF), and Karnofsky Performance Status (KPS) were collected. Participants completed the African Palliative Care Association African Palliative Outcome Scale (APCA APOS), the Medical Outcomes Study Social Support Survey (MOS-SSS), the London Chest Activity of Daily Living scale (LCADL), and the COPD Assessment Test (CAT). Ordinal logistic regression was used to examine factors associated with palliative care-related symptoms and concerns. Results:A total of 387 participants were recruited (mean age 59.5 years).In terms of clinical importance APOS items with a prevalence of at least 20% that were rated at the most burdensome levels (scores of 4 or 5) included breathlessness (50.9%), need for help and advice in planning for the future (50.13%), difficulty sharing feelings (29.1%), weakness (25.32%), worry (25.26%), and pain (22.19%). Multivariable ordinal logistic regression analysis showed that greater social support (MOS-SSS) was associated with lower (better) APOS total scores (OR 0.97, 95% CI 0.96-0.98; p<0.001). Reduced ability to perform activities of daily living (LCADL) was associated with worse palliative care outcomes (OR 1.04, 95% CI 1.02-1.07; p<0.001). Higher (worse) CAT scores were also significantly associated with poorer palliative care outcomes (OR 1.13, 95% CI 1.09-1.17; p<0.001). Conclusion:The impact of social support on self-report concerns demonstrates the importance of a new public health approach to palliative care for COPD patients attending primary care services in sub-Saharan Africa.
Background 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. Objectives 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. Eligibility Criteria 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. Sources of Evidence We systematically searched four bibliographic databases and supplemented this with reference chaining and grey literature searching. Charting Methods Using a qualitative content analysis, we deductively mapped data against the four contextual domains of the Practical Robust Implementation and Sustainability Model. Results 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. Conclusions 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.
Background 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. Objectives To examine how those holding the APHSW-C perceive the certification’s impact on their professional identity, interprofessional recognition, institutional support, and career development. Design 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. Methods 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. Results 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. Conclusion 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 frameworks.
Background 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. Objective The purpose of this investigation is to assess the training needs of IM residents at McMaster University and inform future curriculum development. Design 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. Methods 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. Results 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. Conclusions 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.
Background 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. Objectives We assessed long-term survival patterns among CYP with LLCs and evaluated differences in mortality outcomes according to disease group and selected sociodemographic characteristics. Design Cohort study. Methods 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. Results 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. Conclusion 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.
Background 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. Objective 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. Design A cross-sectional national survey. Methods 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. Results 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. Conclusion 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.
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.
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, “ Fostering Connection in Existential Phases of Life: How Do We Enhance Death and Grief Literacy? ” (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.
Background Palliative care (PC) needs are substantial in Nigeria, yet access to specialist PC services remains limited, particularly in rural and peri-urban communities. Objectives 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. Design Sequential explanatory mixed-methods, participatory co-creation design in which quantitative prioritization informed qualitative refinement. Methods Participants (health professionals, traditional and religious leaders, patients, caregivers, advocates, and policymakers) used Mentimeter® 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. Results 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. Conclusion 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.
Background 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. Objectives 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. Design This study was based on a cross-sectional population-level survey. Methods 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. Results 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%). Conclusion 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.
Background Patient and public involvement (PPI) improves patient-targeted guideline material and is recognised internationally as essential in guideline development. Whilst current research has focussed on PPI both in guideline development and palliative care, evidence regarding its implementation in developing patient-targeted guideline material is limited. Aim To explore participants’ experiences and identify supportive and challenging factors in the participatory development of patient-targeted guideline material in palliative care. Design Qualitative evaluation of the participatory development process (04/2024 - 09/2024) of a patient guide to a German best practise recommendation on intentional sedation using questionnaires with open-ended questions followed by semi-structured interviews. Data were analysed using structuring qualitative content analysis according to Kuckartz. Setting/Participants Four PPI members and four healthcare professionals randomly selected from the editorial panel tasked with developing the patient guide. Results The participatory approach with experienced PPI-members as experts for lay-comprehensibility fostered an equal and respectful environment, allowing all participants to contribute. Despite successful organisation and communication, obstacles arose regarding time management and technical challenges with hybrid sessions and digital co-working formats. The participants did not require additional methodological training. Working in subgroups proved effective and offered emotional support but carried the risk of creating inequalities. Conclusion PPI can be supported by recruiting experienced PPI advisory board members, providing flexibility through hybrid sessions and managing emotional distress through creating a save atmosphere with peer support in subgroup sessions. Communication barriers in hybrid meetings, rejection of digital co-working formats, inattention to PPI in subgroup sessions and time management issues must be considered when planning a project.
Background: Research has revealed a dramatic rise in the adoption of telehealth by healthcare professionals (HCPs). Limited evidence exists focusing solely on HCPs’ adoption and use of telehealth in palliative care and lacks nuance about when and how telehealth is clinically appropriate. Objective: The aim is to deepen understanding of HCPs’ behavioural intention (BI) regarding the adoption and use of telehealth in palliative care, and to examine their current patterns of telehealth use. Methods: Cross-sectional data were collected from HCPs working in palliative care between July 27th and September 22nd, 2023. A probit analysis examined the difference between users and non-users of telehealth in palliative care, while a multiple linear regression assessed the association between a HCPs’ BI of using telehealth and Performance Expectancy, Effort Expectancy, Facilitating Conditions, and Social Influence. Results: Perceived benefits to clinical performance were associated with increased willingness to adopt telehealth. Workplace culture, experience, opportunity to use telehealth, and peer encouragement were highlighted as important contributors to a supportive environment. However, despite positive BIs, many previous users reported infrequent use in practice, suggesting a gap between intention and routine clinical integration. Conclusion: HCPs recognised the benefits of telehealth, but concerns remained regarding treating and managing physical symptoms in palliative care. Telephone-based services were still primarily used, though hybrid models were recognised as needed at times in some clinical situations. Patterns of use suggested distinct user groups, indicating that telehealth implementation requires tailored training, organisational supports, and clear escalation pathways for transitioning from virtual to in-person care. Addressing these factors may support more sustainable and clinically appropriate telehealth delivery in palliative care, with potential benefits for patient outcomes and experiences.
