Palliative Care and Social Practice

Approaches to measuring continuity of care are underdeveloped for the end-of-life context, yet important for understanding the quality of end-of-life care.

Our objective was to develop a grounded theory of continuity of care at end-of-life through the distillation and synthesis of interviews with bereaved family caregivers, which focused on perceptions and experiences of continuity of care at end-of-life.

This qualitative study is phase III of a four-phase mixed-methods sequential explanatory study with the aim of determining which aspects of continuity of care matter most to patients and family caregivers and, accordingly, to develop a novel continuity of care index.

Family caregivers completed one 60-min audio-recorded semi-structured virtual interview. Interview questions explored perceptions and experiences through four categories of questions: Patients’ end-of-life experiences, family caregivers’ desires for end-of-life care, family caregivers’ perceptions of prior quantitative findings, and patients’ and family caregivers’ experiences of continuity of care at end-of-life.

Twenty-one family caregivers completed interviews; 33% were aged 19–44, 90% identified as women, 85% lived in urban settings, and 19% identified as a visible minority. Our theory focuses on patterns of continuity and discontinuity of care at end-of-life. Following Corbin and Strauss’ grounded theory method, we identified causes, contextual/intervening conditions, strategies, and consequences. Causes included health-human resource supply and system integration; conditions included tension between preferences and system capacity, and personal resources. Strategies involved aligning care with cultural or religious considerations, identifying a single point of contact, and delivering information appropriately. Consequences included patients and caregivers feeling educated and prepared, a comprehensive approach to care, and the provision of high-quality, consistent care.

Combined with prior work, these findings will inform a continuity index for use as a system-level end-of-life care indicator.

Despite legal and ethical commitments to dignified end-of-life care, open communication with seriously ill patients remains inconsistent across the National Health Service (NHS). The Serious Illness Care Programme was implemented in two NHS hospital sites to improve communication and care planning for patients with serious illness.

Explore the lived experiences of seriously ill patients and their clinicians participating in Serious Illness Conversations.

Qualitative study using a phenomenological approach within an interpretive paradigm. Narrative interviews were undertaken, and Reflexive Thematic Analysis was used to identify patterns of meaning.

Outpatient clinics in two NHS hospital sites: a tertiary cancer centre and a renal unit within a city teaching hospital. Fourteen patients (seven cancer, seven renal failure) and nine clinicians (six oncologists, three nephrologists) were interviewed.

The following three interrelated themes were generated from the analysis: (1) Patients described the conversations as ‘a transformative experience’, fostering reflection, practical planning, and reframed hope despite a limited prognosis; (2) Serious Illness Conversations were ‘different conversations’ from routine consultations, with use of the Serious Illness Conversation Guide enabling deeper, more holistic dialogue; however, they were segregated from routine practice; (3) Systemic and cultural barriers hindered these conversations from becoming embedded, perpetuating inequity of access to these conversations: ‘Systems, Structure, Process: Serious Illness Conversations, epistemic injustice and cultural violence’.

Findings from this study directly challenge the commonly held belief that these conversations are inherently negative to reveal the transformative power of these important and necessary conversations. They opened up different types of conversations, giving patients agency to direct certain aspects of their life. However, their integration into routine practice is hindered by structural and cultural constraints. Addressing these barriers is essential to ensure all patients have equitable access to these conversations.

Effective pain management remains a significant challenge for patients with cancer, where disparities in care and treatment are evident. Patients from minority ethnic populations are often inadequately assessed and undertreated for pain. Patient-centred educational interventions have proven effective in enabling patients to communicate their pain to clinicians. However, the factors that make cancer pain education interventions relevant and acceptable for patients from minority ethnic populations are not well understood. This study aims to systematically identify, appraise, and synthesise evidence on educational resources for the assessment and management of cancer-related pain, and to evaluate their relevance for patients from minority ethnic populations.

A mixed-methods systematic review was conducted (PROSPERO: CRD42024498184), with searches in MEDLINE, EMBASE, PsychINFO, and CINAHL from inception to June 2025. Studies focusing on patient-centred educational interventions for the assessment and management of cancer-related pain were eligible for inclusion. The search was not limited to minority ethnic populations, as broader cancer pain education literature may offer valuable, applicable insights. Quality appraisal was performed with “QualSyst.”

A total of 3560 studies were identified, of which 62 (5 qualitative, 56 quantitative, 1 mixed-method) met the eligibility criteria. Only six studies specifically focused on minority ethnic populations, all of which were based in the United States and involved Hispanic, African-American, Indian-American, and Asian-American populations. Key components of educational interventions were identified, and an initial logic model was developed to guide the creation of future educational resources for cancer pain management.

Evidence directly addressing cancer pain management in minority ethnic populations remains limited. Nonetheless, the review does identify promising intervention components and structural considerations for culturally responsive patient-centred care. Current evidence highlights the importance of developing tailored educational interventions aimed at improving knowledge, correcting misconceptions, enhancing communication, and promoting self-monitoring to empower patients to manage cancer pain effectively and seek help when needed.

Bereavement affects individuals in diverse ways, and the support they require can vary significantly. For grief to be effectively recognised and addressed in both clinical and research settings, appropriate and validated assessment tools are essential. However, there is a notable gap in child-specific tools, particularly those that use non-verbal approaches to support young children and individuals with Special Educational Needs (SEN), who may have limited verbal communication.

This scoping review aims to explore and map existing evidence on grief and mental health assessment tools that incorporate non-verbal methods. The focus is on tools used with children aged 11 and under, and with older children or adults who have additional learning or communication needs, in therapeutic and research contexts.

We conducted a scoping review using Arksey and O’Malley’s five-stage framework. Searches were carried out across five databases – CINAHL, Medline, PsycINFO, Cochrane Library and Scopus – from their inception to 7 December 2023. Data from eligible studies were analysed using descriptive statistics and content analysis.

From 1498 screened papers, 22 articles were included. Most described mental health tools rather than grief-specific assessments. Five key themes emerged: tool development processes; language and item selection; use of visual imagery; response format design and psychometric properties, including feasibility and utility. These features illustrate how non-verbal methods can support communication and engagement in assessment.

This review highlights current approaches to assessing grief and mental health in children and individuals with SEN using combinations of verbal and non-verbal methods. It provides a foundation for future development of accessible, structured grief assessment tools tailored to these populations and underscores the urgent need for such resources in practice.

The growing number of patients diagnosed with advanced cancer increases the pressure on health systems, especially in lower-middle-income countries. Telemedicine palliative care consultation is innovative in providing quality cancer care while reducing costs. However, there is a lack of randomized controlled studies that evaluate the effects of digital consultations in the palliative treatment of cancer patients. This study aims to investigate the efficacy of telemedicine consultation in outpatient palliative care settings.

During an 18-month recruitment period, participants recently diagnosed with advanced cancer who are not already receiving palliative care are invited to participate in a randomized controlled trial. Eligible participants are randomized to the intervention group (telemedicine) or the control group (face-to-face) consultations. Patients have monthly scheduled consultations (three such consultations), and unscheduled consultations as needed, provided through telemedicine or face-to-face visits. The primary outcomes are patients’ quality of life assessed monthly using the EORTC-QLQ-C30 Questionnaire, changes in self-reported symptom control measured at every visit through the mean changes in distress score on the IPOS Questionnaire, and patients’ satisfaction assessed monthly using the FAMCARE P16 Questionnaire. Secondary outcomes are eHealth Literacy, the domain of intervention, number of patients satisfied with physician communication, patients’ experiences with the care, number of emergency room visits, number of unscheduled visits, adherence to intervention, changes in medication adherence, number of completed telemedicine scheduled visits, and physician’s ability to evaluate a patient through telemedicine.

This is one of the first randomized controlled trials investigating virtual palliative care. Our data will determine whether telemedicine is appropriate for outpatient palliative care.

ClinicalTrials.gov Identifier: NCT06538350.

Serious illness communication (SIC) is central to person-centred care and is associated with improved patient and caregiver experiences, reduced suffering, and more goal-concordant care. Despite substantial investment in SIC training programs, there is limited evidence that these interventions improve real-world outcomes. A key barrier is the absence of a consolidated set of measures that assess effects of SIC, such as proximal, intermediate, and downstream health outcomes among patients and caregivers.

To identify existing patient- and caregiver-reported measures relevant to SIC and map these to a communication outcomes framework to support evaluation of SIC interventions.

An environmental scan was conducted over a 3-year period (July 2022–June 2025), supported by a national expert panel.

Multiple search strategies were used, including searching peer-reviewed literature, grey literature, conference proceedings, as well as citation tracking and expert elicitation. Identified measures were assessed for relevance to Kirkpatrick Level 4 ‘real-world’ (i.e., patient/caregiver) outcomes and mapped to the Street et al. framework. Key characteristics were extracted and summarized descriptively.

47 measures were identified. Of these, 8 mapped to communication functions, 18 to proximal outcomes, 6 to intermediate outcomes, and 15 to health outcomes. Most measures (66%) were designed for patients, with fewer for caregivers (21%) or both groups (13%). The majority (85%) were published after 2000. Among those that reported internal consistency (36/47), most (88%) were acceptable (α ≥ 0.80). Measures mapped to communication functions primarily assessed overall patient/caregiver experiences. Measures mapped to proximal, intermediate, and health outcomes increasingly captured consequences of communication, evolving internal states, and downstream psychological or quality-of-life outcomes.

The measurement landscape for SIC is broad but fragmented, with few measures developed specifically for the SIC context and caregivers. Mapping existing measures provides a foundation for developing a coherent, SIC-specific core set of patient- and caregiver-reported outcomes.

Many people still lack a clear understanding of what palliative care is and the value it brings. Although recognized by the World Health Organization as a fundamental human right, palliative care remains inaccessible to many. This lack of awareness and genuine understanding hinders its integration into health systems. Art—and theatre in particular—can offer innovative ways to connect with the public.

To explore how a theatrical performance about the origins of palliative care can influence students’ understanding and attitudes.

A qualitative descriptive study with an interpretivist approach.

The study examined the impact of the play Cicely and David on university students. The play dramatizes the early development of palliative care through imagined dialogues between Cicely Saunders and David Tasma. Audience members (n = 42) completed an open online questionnaire, and data were analysed using inductive thematic analysis.

Students reported improved understanding of palliative care and its historical foundations. The performance evoked strong emotional responses and personal reflection. Key values such as empathy, accompaniment, and focus on quality of life were highlighted. Theatre was perceived as an effective and transformative way to convey the principles of palliative care.

Theatrical performance is an innovative and effective tool to raise awareness and educate about palliative care. Beyond knowledge transfer, it fostered empathy and personal motivation to engage with this field. These findings underscore the potential of art-based strategies to promote palliative care understanding and engagement among younger generations, contributing to broader societal awareness and support.

The COVID-19 pandemic highlighted the need for innovative approaches to healthcare delivery, particularly for older adults with frailty in crowded settings. In Québec, Canada, the shortage of hospital beds during the pandemic exposed critical gaps in the capacity to provide appropriate end-of-life care for affected residents of residential care facilities (RCFs).

This study aimed to examine the implementation of the COVID-19 Intensive Home Care Team (IHCT) and how it transformed the physical and social environment of RCFs to enable end-of-life care and “dying at home” in an unprecedented time.

A qualitative case study design was used. Between September 2020 and January 2021, qualitative data were collected through 30 in-depth interviews with front-line workers of the IHCT, healthcare managers, and academics in the home care sector. Thematic analysis reveals three interrelated themes: the ambiguities of caring spaces, the centrality of medication management, and the reconfiguration of RCFs through new spatial, technological, and relational arrangements that enabled “dying at home” during the COVID-19 pandemic.

Findings revealed that the IHCT initiative reshaped RCFs into a necropolitical space, showing the complex interplay between space, care practices, and societal values toward older adults with frailty. The transformation enabled a form of compassionate end-of-life care within familiar settings as well as exposed underlying societal hierarchies that determine whose lives, and deaths, are valued.

The IHCT model illustrates how emergency health interventions can reconfigure care spaces and challenge conventional boundaries between home, private, and public care systems. However, it also underscores the ethical and political dimensions of care for frail older adults in crisis contexts.

Māori people in Aotearoa New Zealand and Australia experience significant healthcare inequity as they age and towards the end of their lives. Compassionate community approaches to ageing and end-of-life care are increasing in popularity throughout the world. However, this approach has arisen from Eurocentric knowledge systems and not from First Nations people and their communities.

This research aimed to gain insight into what the Compassionate Communities approach means for First Nations people and identify implications for Māori in Aotearoa New Zealand and Australia. A systematic literature review explored the intersection of Compassionate Communities and First Nations peoples’ perspectives and needs. Addressing the overarching question of: What does the Compassionate Communities approach mean for older First Nations people?

A Kaupapa Māori approach was used to answer the research question and to explore the literature retrieved.

The main literature search was conducted during 2020–2022, with subsequent searches in 2023 and a final search in 2025. The review was conducted in Covidence systematic review software following the PRISMA process. Screening was completed by two reviewers and assessed against the inclusion and exclusion criteria. Kaupapa Māori theoretical questions were applied to each full-text article, with a rating of positive, neutral or negative allocated to establish conceptual alignment. NVivo thematic analysis software was utilised to code and explore themes.

Fifty papers were imported into Covidence, with 22 studies included in the final review.

The review found minimal discussion about how Compassionate Communities approaches are implemented in a way that includes First Nations knowledges of ageing and end of life. There is a greater need to understand the contribution First Nations peoples’ wellness philosophies make to the Compassionate Communities approach. Evaluations of Compassionate Community initiatives need to be more inclusive of First Nation peoples and their knowledges. In Aotearoa New Zealand and Australia, more research is needed to understand pathways to well-being for older Māori people based upon existing community strengths to ensure flourishing futures. Addressing these knowledge deficits will support efforts to address the inequities experienced by First Nations people as they age and at the end of life.

A cancer diagnosis and its treatment can profoundly disrupt an individual’s life, often prompting a reevaluation of personal goals, relationships, and self-identity. Qualitative research has documented experiences of emotional transformation, altered life priorities, and personal growth in cancer survivors. Many struggle to maintain normalcy while adapting to a reality shaped by the illness. This study is motivated by a critical gap in cancer care, that is, a holistic understanding of patients’ lived experiences in their journey. The study aimed to explore key aspects of cancer patients’ experiences, including disease-related factors, as well as their psychosocial and emotional transitions over time.

A qualitative research design was adopted using in-depth interviews (life course transition approach). The study employed a life course perspective to examine the cancer journey across three primary thematic phases: (a) Initial diagnosis—exploring both the negative and positive impacts of receiving a cancer diagnosis; (b) Confinement and restrictions—addressing the emotional and psychological effects following diagnosis, including lifestyle changes and limitations; and (c) Obstacles of the cancer journey—identifying ongoing challenges during treatment and survivorship. Each phase encapsulated a range of biopsychosocial factors (codes), which were categorized as either negative (e.g., deterioration of health, treatment side effects, emotional distress, financial burden) or positive (e.g., support from family, friends, and healthcare providers that foster resilience and coping).

The study revealed that the cancer journey unfolds in distinct yet interconnected phases starting from diagnosis, and carried through treatment, survivorship, and end-of-life care. Each phase presents a set of unique challenges and thus the corresponding transitions in the life course. Psychosocioeconomic dimensions, particularly social support, stigma, sense of contagion, individual coping mechanisms resilience, role of health insurance have emerged as pivotal in influencing patients’ health trajectories. Importantly, effective communication with healthcare providers and the consistent delivery of patient-centered care facilitate smoother transitions.

This research highlights the critical role of psychosocial and financial determinants and the importance of phase-to-phase continuity in cancer care. The findings underscore that effective healthcare communication and a patient-centered approach are essential for supporting patients through the evolving complexities of their cancer journey.

Soft tissue and bone sarcomas affect adolescents and young adults and require intensive treatments despite overall poor prognoses. These factors seem to provide an indication for palliative care, a specialty committed to addressing physical and psychological suffering for patients with serious illnesses.

Explore palliative care intervention in the adolescent and young adult sarcoma population and qualitatively analyze palliative care visits and medical oncology visits to propose a framework for collaboration.

A quantitative retrospective review and directed content analysis of palliative care and medical oncology visits.

Single-center review of adolescent and young adult patients with soft tissue or bone sarcoma who died April 1, 2019–March 31, 2024, and directed content analysis of clinical documentation from 10 patients who received palliative care.

Thirty-nine of 63 patients (62%) received palliative care. Median overall survival from advanced/metastatic diagnosis was 700 days for those with palliative care and 500 days for those without (95% CI: 0.84–2.33). Overall survival at 24 months from advanced/metastatic diagnosis was 43.6% for those with palliative care and 29.2% for those without, p = 0.38. Palliative care and medical oncology visits addressed physical symptoms, while end-of-life discussions were more common in palliative care visits.

Adolescents and young adults with soft tissue and bone sarcomas may especially benefit from early engagement of palliative care both in trends toward improved overall survival and respect for end-of-life wishes. Future directions will be aimed at promoting early engagement through patient and provider education and optimization of referral patterns to identify vulnerable patients.

Children with cancer face a significant physical and psychosocial burden, highlighting the need for paediatric palliative care (PPC). Global estimates indicate that over 21 million children require PPC. However, in low- and middle-income countries such as India, the need is largely unknown, and access remains limited, necessitating the conduct of this study.

A multicentre, prospective, cross-sectional study was conducted across three tertiary cancer centres in India to assess the palliative care needs of 150 children with cancer and their families using the Paediatric Palliative Screening Scale (PaPaS). The PaPaS tool evaluated five domains, and the total scores were used to stratify the need for PPC. The three participating centres differed in patient flow and the extent of palliative care integration, representing academic and public healthcare settings.

Based on PaPaS scores, 49.3% of children with cancer had moderate (secondary) palliative care needs, 36.7% required introduction to palliative care, 11.3% had minimal needs that paediatric oncologists could manage, and 2.7% required palliative care as the focus of treatment. Psychological distress was significantly higher among family caregivers (57%) than in patients themselves (33%). While 91% of families were open to palliative care discussions, clinicians perceived that only 4.7% (7/150) of children would likely benefit from referral to palliative care services. Domain-specific analysis revealed significant correlations between treatment burden, family distress, and overall palliative care needs.

There is a significant unmet need for integrated PPC among children with cancer in India, exacerbated by a very small number of them accessing care due to non-referral by oncologists or the unavailability of PPC.

Death literacy – the knowledge, skills, and capacity to navigate end-of-life care, advance care planning, dying, and death care – is shaped by cultural, religious, and linguistic factors. The Death Literacy Index (DLI) captures practical, experiential, factual, and community domains. Currently, there is limited evidence about death literacy levels among culturally and linguistically diverse communities in multicultural settings, and little is known about how translated versions of the DLI perform psychometrically in these groups or how culturally tailored, community-delivered interventions can strengthen death literacy.

(1) To evaluate the impact of culturally adapted, community-designed and delivered interventions on DLI subscale and total scores among Filipino, German, Italian, and Vietnamese communities in South Australia; and (2) to examine the preliminary psychometric properties (factor structure and reliability) of translated DLI instruments in these populations.

Pre–post intervention study.

Community leaders in each group co-designed and delivered a community-specific intervention over 3–5 months using culturally familiar channels (workshops, radio/podcasts, social media, and printed/online resources). Thus, four parallel but distinct interventions were implemented, one in each cultural/language community. The DLI was professionally translated (German, Italian, Tagalog, Vietnamese) with community review. Surveys were administered in preferred languages at baseline (T1) and ~6 weeks post-intervention (T2). Psychometrics (T1, n = 242): confirmatory factor analysis (CFA) and reliability. Impact (matched pairs, n = 100): Wilcoxon signed-rank tests.

Psychometrics (T1, n = 228): Subscale CFAs supported the translated DLI across groups, while the total-scale fit was poor – reinforcing a multidimensional construct; internal consistency was good–excellent overall, with weaker reliability for Talking Support subscale (Vietnamese) and some variability in Experiential Knowledge. Intervention impact (matched pairs, n = 100): Filipino participants showed significant increases in median scores across all four DLI subscales and the total DLI score (medium–large effects); Vietnamese participants showed significant decreases in Practical Knowledge and total DLI scores, with little change on other subscales; German and Italian groups demonstrated small, mostly non-significant increases on selected DLI subscales (particularly Factual and Community Knowledge), with minimal change in total DLI scores. Across groups, DLI subscales capturing knowledge of resources and supports generally improved.

Culturally tailored, community-delivered interventions can strengthen death literacy, but effects vary by cultural/linguistic context. DLI subscales function adequately across groups, whereas total-scale fit is poor. Future work should refine translations (e.g. DLI-R), address weaker domains, and adapt content and delivery to community preferences to enhance cultural responsiveness and equity in end-of-life literacy. The study demonstrates how death literacy can operate as a culturally responsive, community-level public health indicator and provides evidence to guide adaptation of both the DLI and community programs to advance equity in end-of-life literacy and care.

In China, improved cancer survival contrasts with persistent pessimistic attitudes among clinicians, which impacts care quality. We developed a “Whole-Process Management” (WPM) training program to bridge this gap by reshaping internal medicine residents’ understanding of the cancer care continuum.

To investigate whether a WPM clinical training strategy can transform pessimistic attitudes toward cancer care and foster a more integrated understanding of palliative therapy among internal medicine residents.

A pre-post study utilizing semi-structured interviews. Responses were coded using a predefined categorical framework (positive/negative/NA) and compared before versus after the intervention to characterize internal medicine residents’ attitudinal shifts regarding cancer curability, treatment toxicity, and the role of palliative care within the cancer care continuum.

Fifty-seven junior internal medicine residents undergoing oncology rotation at a university-affiliated hospital (January 2022–January 2023) received the WPM intervention. This novel training employed longitudinal patient case tracking and structured reflective seminars to help internal medicine residents view cancer as a chronic condition that can be actively managed.

The WPM program significantly reduced pessimistic attitudes. Internal medicine residents recognizing patients in good physical condition increased from 26% to 81% (p < 0.001). Perceptions of treatment toxicity (53% vs 4%), ineffectiveness (75% vs 4%), and expense (84% vs 7%) substantially decreased (all p < 0.001). Awareness of tumor curability improved from 5% to 79% (p < 0.001). The program also improved attitudes toward palliative care: understanding of hospice care principles increased from 0% to 75% (p < 0.001), willingness to consider hospice care for terminal patients rose from 21% to 84% (p < 0.001), and willingness to prescribe opioid analgesics increased from 9% to 93% (p < 0.001).

The WPM clinical training strategy effectively addresses pessimistic attitudes by transforming internal medicine residents’ clinical perspective from isolated tasks to the patient’s entire journey, thereby enhancing their ability to provide integrated palliative and anti-cancer care.

Palliative gastrointestinal surgery improves symptoms and health-related quality of life in patients who present with complications from advanced cancer. However, palliative surgery near the end-of-life is associated with significant physiological and psychological stressors for both patients and their caregivers. Yet literature on patient and caregiver centric narratives following surgery remains limited.

We aim to explore challenges, perceived care gaps, and coping mechanisms of patients with advanced cancer and their caregivers following palliative gastrointestinal surgery.

We conducted qualitative in-depth interviews with 25 purposively sampled patients with advanced cancer and 13 caregivers following palliative gastrointestinal surgery. Interviews were transcribed verbatim and thematically analyzed.

There were four major themes that identified as challenges and perceived care gaps among patients and caregivers: (1) physical, emotional, and systemic challenges of living with a stoma after palliative gastrointestinal surgery, (2) emotional, existential, and relational challenges of living with advanced cancer, (3) navigating uncertainty amid suboptimal surgical communication, and (4) emotional and relational strain from lack of compassionate surgical care. Four themes identified as coping mechanisms: (1) emotion- (2) meaning-, (3) problem- and (4) avoidance-focused coping.

Patients and caregivers face multifaceted challenges related to the impact of gastrointestinal surgery and their life-limiting advanced cancer condition. They also perceive significant gaps in surgical care delivery. Our findings shed light on unmet needs among patients with advanced cancer and their caregivers, highlighting opportunities for targeted intervention to improve the quality of surgical care delivery following palliative surgery.

There is a growing need for psychosocial oncology and palliative care training among nurses in Cameroon and other low-resource settings, where formal education in these domains remains limited. The Psychosocial Oncology and Palliative Care Training (POPCaT) program was developed to address this gap by providing a blended, contextually relevant training to nurses working in some healthcare settings in Cameroon.

To evaluate the implementation, outcomes, and participant experiences of the POPCaT training pilot delivered across six health facilities in Cameroon.

This was a pilot evaluation conducted immediately following a 4-day intensive POPCaT training. The course combined didactic lectures, interactive group work, clinical case discussions, role-plays, and a supervised visit to a palliative care unit. Fifty-two nurses purposively selected from six health facilities participated in the training, and 48 voluntarily completed the post-training evaluation. Quantitative data were collected via a structured survey containing closed-ended Likert scale questions assessing course satisfaction, content relevance, learning outcomes, and likelihood of practice implementation. Descriptive statistics were used to summarize responses. Qualitative data were collected through open-ended questions exploring motivations, course experiences, perceived strengths, limitations, and post-course intentions. Thematic analysis was applied to analyze open-text responses.

Participants were mostly female (83.3%) with a mean age of 38.2 years and varying levels of clinical experience. Most (64.5%) held a nursing diploma, while only 31.3% had prior oncology training. Overall course satisfaction was high, with 77.1% rating the program as “very good” and 93.8% reporting a strong likelihood to implement learning in practice. Participants praised the course content, relevance, interactive methods, and facilitator expertise. Key strengths included clinical exposure, bilingual delivery, and group learning. Areas for improvement included calls for expanded content on breaking bad news, cultural and spiritual care, sexuality, survivorship, and practical service implementation.

The POPCaT training was positively received, enhanced nurses’ confidence and knowledge, and generated actionable post-course plans across individual, clinical, and institutional levels. Findings support the relevance and scalability of this model for strengthening palliative and psychosocial oncology care in low-resource settings. Future iterations should incorporate suggested enhancements and explore long-term impacts on practice and patient outcomes.

Globally, stroke is the second leading cause of death. About 20% of patients with acute stroke die within 30 days of onset, yet fewer than 10% receive palliative care, and only a small fraction of these receive it in specialized palliative units. Rather, they are treated in stroke units, where both knowledge of palliative care and support for bereaved family members may be inconsistent and limited.

To describe the occurrence and design of bereavement support in the form of conversations offered to family members of patients who die from acute stroke in a stroke unit, as well as the registration in the Swedish Register of Palliative Care.

This study employed a quantitative descriptive design with a cross-sectional approach.

A study-specific survey consisting of three main questions and several follow-up questions was used. All 72 stroke units in Sweden were contacted in person, by phone, or by email; 71 units ultimately participated.

Bereavement support in the form of conversations was provided to the family members of patients who had died from an acute stroke in 34 (48%) of the 71 stroke units. Among these, 21 units offered bereavement support to family members in all deaths, while 13 provided it when the need for support was identified. In total, 60 of the 71 stroke units (84%) register in the Swedish Register of Palliative Care, and of these, 25 units systematically use the registered data.

Neither bereavement support in the form of conversations nor the systematic use of the palliative care registry are fully established part of care at stroke units. To ensure good and equitable end-of-life care, support for bereaved family members needs to be strengthened. Palliative registry data from stroke units represent an underutilized resource with the potential to improve both palliative care and bereavement support.

Structured clinical records are essential for ensuring the quality and continuity of palliative care, particularly in socially vulnerable contexts. Existing digital systems rarely capture psychosocial or subjective data, limiting interdisciplinary collaboration and person-centered care planning.

To describe the development and preliminary usability assessment of Prontuário Compassivo, a Brazilian digital platform designed to support clinical documentation and coordination of community-based palliative care.

This methodological study was conducted between 2022 and 2025, adopting an agile development approach grounded in the Scrum framework and guided by user-centered design principles. The platform was implemented as a responsive web system with secure authentication mechanisms, interoperability through REST (Representational State Transfer) application programming interfaces, and modules integrating standardized palliative care assessment tools. Usability assessment was conducted prospectively between February 2024 and January 2025 within the Favela Compassiva project in Rio de Janeiro. Data collection included direct observation of home visits, field diaries, and interdisciplinary meetings documenting professionals’ interactions with the platform. Usability aspects explored included learnability, ease of use, navigation clarity, and integration into routine clinical workflows.

By January 2025, the system had generated 520 clinical records used by 71 interdisciplinary health professionals involved in community-based palliative care. Three analytical categories emerged: (1) routine use, (2) challenges related to features and user diversity, and (3) contextual adjustments. These findings indicate that the platform became embedded in routine home-based care activities, although its use varied depending on users’ familiarity with digital tools. Iterative refinements included simplified and extended versions, reorganized navigation flows, and automated referral features.

Prontuário Compassivo demonstrated technical feasibility, contextual usability, and adaptability in resource-limited environments. Its integration of interprofessional documentation, artificial intelligence resources, and interoperability positions it as a promising digital health solution for improving documentation, communication, and continuity of palliative care in socially vulnerable settings. Future studies should conduct standardized usability testing and evaluate the platform’s impact on clinical outcomes.

Palliative sedation is a key component of palliative care for end-stage cancer patients with refractory symptoms. In mainland China, midazolam-based titrated palliative sedation is rarely used clinically, with limited data and studies reported.

To illustrate the development of clinical practice patterns for midazolam-based palliative sedation in advanced cancer patients in mainland China, identify clinical regularities, and summarize clinical experience to promote the administration of palliative sedation for terminally ill cancer patients in mainland China.

A retrospective observational study was conducted using clinical records of terminal cancer patients who underwent midazolam-based palliative sedation from 2016 to 2025.

Terminal cancer patients who underwent palliative sedation in the oncology ward of Hangzhou Hospital of Traditional Chinese Medicine, a tertiary medical center in Eastern mainland China.

The overall implementation rate of palliative sedation in terminal cancer patients was 7.98% (55/689). Refractory dyspnea was the primary indication for sedation (47.3%). The proportion of patients receiving adequate sedation was significantly higher in the titrated group than in the non-titrated group (p < 0.001). The mean survival time of the 50 patients who received adequate sedation was 67.45 h. Among them, the mean survival time in the dyspnea subgroup (38.88 h) was significantly shorter than in the pain (125.42 h) and agitation (120.33 h) subgroups (p < 0.001). The mediation analysis further demonstrated that the indication for palliative sedation (presence or absence of dyspnea) fully mediated the association between the patient’s disease diagnosis (presence or absence of lung cancer) and survival time. In this study, 66.7% of family members had never previously heard of palliative sedation, and their attitudes toward this therapy were quite ambivalent.

Effective communication of palliative sedation helps improve family members’ acceptance of this therapy. Patients with refractory dyspnea, especially lung cancer patients with this symptom (who may have more severe underlying disease), may have shorter survival times than those with agitation or pain. Rigorous pre-procedural risk communication with families is recommended before sedation, and close monitoring and assessment during sedation are essential for safety.

Professionals engaged in HIV research at the end-of-life face ongoing emotional demands, yet there is limited evidence on whether brief compassion-based interventions can support resilience and team functioning in this context.

To explore how members of the Last Gift team experienced a brief compassion training program and to examine its perceived value and acceptability within an emotionally demanding end-of-life HIV research setting.

We conducted this qualitative study within the Last Gift, a rapid research autopsy program involving people with HIV and life-limiting illness at the University of California San Diego. Following completion of a four-week compassion training program, we held three focus group discussions with interdisciplinary team members (n = 10). We audio-recorded, transcribed, and analyzed discussions using conventional content analysis.

We identified three major themes: (1) intrapersonal growth and improved inner awareness when navigating emotionally intense work; (2) changes in interpersonal relationships with enhanced capacity to extend and receive compassion; and (3) strengthening community and shared purpose in workplace culture. Participants described applying compassion practices both at work and in daily life, contributing to improved interpersonal interactions, reduced emotional reactivity, and greater workplace satisfaction.

Brief compassion training programs may offer a feasible and meaningful approach to supporting well-being, emotional resilience, and team cohesion among professionals working in end-of-life HIV research, particularly when embedded within supportive organizational contexts. Further research is needed to examine sustainability and broader implementation in palliative and end-of-life research settings.

The subcutaneous (SC) route is used routinely in patients with advanced diseases requiring palliative care. Pre-prepared individual doses of medication stored in syringes may facilitate home administration for symptom management; however, there are limited data on the microbiological and physicochemical stability of such formulations.

To assess the microbiological and physicochemical stability of the pre-prepared formulations stored in syringes for SC administration.

Experimental study of the microbiological and physicochemical stability of pre-filled syringes during storage.

Standardised methods of medication preparation were followed for morphine, midazolam, metoclopramide, hyoscine butylbromide, levomepromazine, haloperidol, ondansetron, fentanyl, ketorolac and dexamethasone, as well as drug mixtures (morphine + midazolam and midazolam + levomepromazine). Microbiological stability of morphine, midazolam, metoclopramide, butylbromide and drug mixtures was analysed by culture on conventional media and monitoring growth over 14 days. A total of 200 syringes were analysed. Physicochemical stability was assessed using ultra-high-performance liquid chromatography with ultraviolet detection coupled to a mass spectrometer, pH measurement and visual macroscopic examination, with measurements taken at eight time points, of the formulations stored in capped polypropylene syringes in air-tight bags in the dark at room temperature (22±3°C) for 12 weeks.

In the microbiological stability analysis, all cultures studied were negative. In the physicochemical stability analysis, the formulations studied retained at least 90% of the initial drug concentrations for 12 weeks, except in the case of metoclopramide (for 3 weeks) and showed no significant changes in pH or macroscopic signs of degradation.

Formulations aseptically prepared and stored in syringes are microbiologically and physicochemically stable for 12 weeks in the cases of almost all drugs studied, the exception being metoclopramide (which was stable up to week 3). These findings suggest that such formulations show stability characteristics consistent with suitability for SC administration of drugs in palliative home care.

This study aimed to identify how contextual, dispositional, and relational factors intersect to shape the participant experience of serious illness conversations (SICs) while exploring the nuances of appraisal across different clinical specialties.

A convergent parallel mixed-methods study was conducted as part of a Serious Illness Care Programme pilot at two Singaporean tertiary centres. Participants with advanced cancer or heart failure were recruited from oncology, cardiology, and palliative medicine clinics. We conducted semi-structured interviews and a Patient Experience Survey (PES) that explored participants views on their communication experience. .Qualitative data were analysed via a case-based thematic approach. Findings were summarized by coders into experience categories of “Good,” “Moderate,” or “Poor.” Quantitative comparisons between patient-reported PES scores and coder-assigned ratings were performed using the Kruskal-Wallis rank-sum test.

Forty participants were recruited (33 patients, 7 caregivers), with 32 (26 patients, 6 caregivers) completing interviews, and 24 patients completing the PES. Among interviewed patients, 19 had advanced cancer and 7 had heart failure. While 96% of patients rated their SICs as “mostly” or “extremely” worthwhile in the PES, qualitative analysis revealed a complex landscape of acceptance, ambivalence, and distress. Discrepancies between patient-reported and coder-assigned ratings indicated that participants appraised encounters as “Worthwhile” even when experiencing significant distress. Four themes were identified as primary influences on participant experience: subjective illness understandings, clinician conversational practices, personal readiness, and relational dynamics. The analysis suggests that trust established through longitudinal therapeutic relationships functioned as a buffer against negative appraisals, offer a possible explanation for why “Worthwhile” scores remained largely experience-invariant.

This study demonstrates that SIC acceptability is a dynamic appraisal refracted through subjective illness understandings and relational contexts. Future research should investigate specific communicative mechanisms that foster affective readiness and rapport, ensuring that serious illness communication aligns with, rather than disrupts, patient and caregiver expectations of healthcare communication.

The disease burden of malignant brain tumours poses significant challenges to both patients and their family caregivers. Even years post-bereavement, neuro-oncology caregivers can suffer serious and long-lasting adverse outcomes. A previous quantitative survey (reported separately) highlighted significant challenges experienced by bereaved neuro-oncology caregivers. This current work explored these issues further through focus groups.

To identify opportunities to enhance support, we investigated caregiver experiences during the patient’s end-of-life phase, the dying process, and post-bereavement outcomes.

Focus groups as a component of a sequential mixed-methods study designed together with bereaved caregivers.

We performed online focus groups covering the end-of-life phase, the period surrounding the patient’s death, and their post-bereavement outcomes. Sampled from survey respondents, caregivers who were ≥6 months post-bereavement were invited to take part in online focus groups. Following audio transcription, data were analysed using reflexive thematic analysis.

In three groups, 7 female (64%) and 4 male (36%) caregivers (55% partners of patients) of deceased patients diagnosed with glioblastoma were interviewed. Themes covered 1) care experiences in the end-of-life phase (covering communication, information, support needs, and balancing family dynamics), 2) caregiver experiences surrounding patient death, and 3) immediate and longer-term post-bereavement outcomes (covering complex and conflicting emotional responses, expectations and strategies to cope with grief, and the value of formal and informal support).

Findings highlight ongoing significant and unmet emotional support needs of bereaved neuro-oncology caregivers. Caregivers want and deserve to be proactively offered adequate and timely support which could limit the long-lasting adverse impact of providing care.

The global need for palliative care is increasing. To respond effectively, all healthcare professionals who care for persons with serious illnesses should be trained to provide core palliative care. Despite increasing recognition of its importance, education remains inconsistently implemented.

To explore and identify the essential elements that define and support palliative care education, and to propose a preliminary typology of structural, process, and outcome quality indicators.

An umbrella review was conducted according to the Joanna Briggs Institute methodology.

We systematically searched three electronic databases (CINAHL, MEDLINE, PsycInfo) for literature reviews on palliative care education. Data were analysed using a combined deductive–inductive qualitative approach.

Twenty-four reviews were included in the analysis. Seven structural indicators were identified relating to the training and duration of palliative care exposure, instructional format/delivery, contents, structured course development, involvement of local staff and experts, multidisciplinary and context-specific learning, and organisational support. Seven process indicators were identified, encompassing experiential learning, multi-modal approaches, reflective practice and emotional processing, group-based peer learning, embedded learning, flexibility, and feedback. Six outcome indicators were identified, including the enhancement of competencies, sustainability and long-term impact, validated tools for evaluation, participant satisfaction, integration into routine practices, and impact on patients and families.

This umbrella review proposes an evidence-informed framework of potential quality indicators for palliative care education, offering guidance for curriculum design and policy development while identifying key areas requiring empirical refinement and validation.

Raising public awareness of palliative care has been identified as a priority within research literature on public health approaches to palliative care and within policy documents from many countries, including Canada. However, there is a lack of clarity about what this entails.

To develop conceptual clarity and move from the broad goal of “raising public awareness” of palliative care to more clearly defined outcomes and priorities.

Group concept mapping is a participatory mixed methods approach that combines qualitative and quantitative analysis. Trochim’s six phases of concept mapping methodology were followed.

Convenience sampling was used to invite participation. Participants were asked to brainstorm as many ideas as they wanted in response to the prompt: “Good public awareness of palliative care means . . ..” A master list of these ideas was then shared with participants and they were asked to: (1) sort the responses into groups and (2) rate each response on a Likert scale of 1–5 in terms of importance. Statistical analyses were conducted to compile the data into a point map and a range of cluster maps. Participants selected the best-fitting cluster map.

Nineteen people participated in the group concept mapping exercise. Eighty-four unique statements were generated in response to the prompt, and participants selected a seven-cluster map as best fitting the data. The seven clusters represent components of good palliative care public awareness and were assigned the following labels: (1) understanding palliative care; (2) knowing how to access palliative care; (3) planning ahead; (4) community support for palliative care; (5) caregivers are supported; (6) comfort talking about death and dying; and (7) palliative care is normalized.

As a participatory mixed method, group concept mapping offers a novel approach to providing clarity and supporting action planning. It has been instrumental in refining activities to improve public awareness of palliative care in Alberta, Canada, and may be useful to others undertaking similar initiatives. Addressing these domains is a promising means of improving public awareness, understanding, and ultimately uptake of palliative care.

Living with cancer can position individuals in a liminal space marked by uncertainty, proximity to death, and experiences of grief. In everyday interactions, attempts at comfort may become hurtful when they constrain acknowledgment of mortality or emotional complexity. This study draws on Allan Kellehear’s public health palliative care approach (2013) to examine such interactions through the lens of death literacy.

To explore how people living with cancer experience well-intended but hurtful communication, and to interpret these interactions in relation to death literacy and community capacity to engage with illness and mortality.

The study is based on a qualitative analysis of responses to an open-ended survey item.

Belgian adults diagnosed with cancer within the previous three years (N = 733), all of whom had received treatment beyond surgery, completed an online psychosocial survey. An open-ended item invited participants to describe potentially well-intended but hurtful communication. 710 responses were analyzed inductively and subsequently interpreted through a death literacy and public health palliative care lens.

Participants described recurring communicative patterns clustering into five themes: existential minimization and denial; normative disciplining of illness; experiential invalidation; relational withdrawal and narrative displacement. Across themes, communication was shaped not only by content but by timing, relational positioning, and emotional attunement. Comments about death, recovery, or coping were experienced as harmful when misaligned with participants’ illness trajectory or emotional state.

Interpreted as socially situated signals rather than direct measures of death literacy, these findings suggest that everyday cancer communication may reflect constraints in community-level communicative resources for remaining present with uncertainty and implicit mortality. Strengthening community capacity through public health palliative care initiatives - such as compassionate communities approaches and accessible psychosocial support infrastructures (e.g., walk-in centers) - may broaden the socially available repertoires for attuned support in everyday life.

The Global Organization Board of the Cancer Association Network projected global number of cancer cases to reach 35 million by 2050. In Africa, patients with newly diagnosed cancer are projected to double by 2030, underscoring the need for comprehensive strategies encompassing prevention, early detection, treatment, and palliative care (PC). However, PC service in Africa remains fragmented, often lacking holistic and continuous care delivery, with more emphasis on facility-based services.

This scoping review aims to synthesize available evidences on PC approaches for cancer patients in Africa, challenges in PC delivery, and suggested measures to improve PC.

This scoping review employed the Joanna Briggs Institute review methodology. Extensive search of published and unpublished literature in English was conducted using databases including MEDLINE (PubMed), Embase (Ovid), Web of Science Core Collection, Scopus, Google Scholar, and Google. Records of 1242 were identified; after removing 309 duplicates, 933 citations were screened for abstract review using Rayyan software. Three reviewers assessed abstracts, and full texts resulting in inclusion of 27 studies.

The findings are organized under three themes. The first theme addressed PC approaches in Africa, including home-based, community-based, facility-based, integrated, and comprehensive models. Despite the availability of multiple PC approaches, most countries in Africa primarily practice pain relief, with limited adaptation of the psychological, financial, spiritual, and end-of-life care need of the patients. The second theme identifies the challenges in comprehensive PC provision that includes restrictive opioid laws, under-funding, shortages of workforce and resources, and gaps between PC needs and available services. The third theme synthesizes suggested measures for improvements which indicate the necessity of a shift toward comprehensive, patient, and caregiver centered models with smooth referral practices. These suggestions also emphasize policy reforms to improve access to medicines and funding, and education for health workers and community volunteers.

In Africa, PC remains largely inaccessible, fragmented, and of poor quality despite the existence of different approaches. To bridge this gap, implementation of a comprehensive care model that ensures continuity of care among home, community, and facility is crucial.

Open Science Framework (osf.io/np9vq).

Community-based palliative care (CBPC) shows promise for supporting patients with advanced noncommunicable diseases, yet implementation remains inconsistent. Most research focuses on organizational and provider perspectives, with limited understanding of patient and caregiver views on service acceptability and implementation.

To understand barriers and facilitators to implementing CBPC services from the perspectives of patients with advanced congestive heart failure, chronic obstructive pulmonary disease and end-stage renal failure, and their primary caregivers.

Qualitative study using focused open-ended interviews conducted over four-monthly intervals. Data were analysed using reflexive thematic analysis within a critical realist paradigm.

Twenty-five patients (11 male, 14 female; 13 CHF, 8 ESRF, 4 COPD) and 9 caregivers (1 male, 9 female) were recruited from the Segamat district in Malaysia. Participants met inclusion criteria using the Supportive and Palliative Care Indicators Tool. One-on-one open-ended qualitative interviews using the reflexive thematic analysis approach explored experiences of living with advanced illness, perceived needs and perspectives on establishing CBPC services.

Four key themes emerged: “What they offer is not what we need” revealed skepticism towards new healthcare services based on negative past experiences; “Supportive relationships over support services” demonstrated preference for care from trusted community members rather than outsiders; “The myriad cares of family” highlighted the valued role of family caregivers in providing companionship and maintaining patient identity; and “How to care for us” identified unmet needs including transportation, financial support and social connection. Participants emphasized that trust-building through community engagement must precede service implementation.

Successful CBPC implementation requires fundamental shifts from expert-driven service delivery towards relationship-centred, community-engaged approaches. Services must be co-developed with communities, prioritize trust-building and address social determinants of health alongside clinical needs. Traditional “build it and they will come” approaches are insufficient for achieving community acceptance and sustainable implementation.

To investigate reflections on wishes and needs of adults living with the life-threatening disease Duchenne muscular dystrophy (DMD) to target future rehabilitation.

Adults with DMD have a short life expectancy with a mean age of death at 26.8 years. Despite this, palliative rehabilitation is sparsely mentioned in standards of care. Relatives and healthcare professionals seem to find it difficult to talk about the future and future care with people living with a life-threatening disease.

The design of the study was qualitative using the Interpretive Description Methodology and the salutogenic theory of Sense of Coherence (SOC) as the theoretical framework.

The method was individual semi-structured interviews with 13 adult men with DMD. The interviews were conducted from February to March 2025.

Navigating life with DMD was considered a condition of life, and being able to accept and adapt to uncertainties were effective coping mechanisms affecting the participants’ overall SOC. Furthermore, living with a life-threatening disease was managed by living one day at a time, finding solutions, taking life as it comes, and getting the best out of it. Also, having dreams like everybody else, despite the uncertain future, was important. Finally, talking about future care felt strange to the participants, but it was easier if someone dared to ask directly. Timing and addressing individual needs were essential.

Adults living with DMD appreciated the opportunity to talk about their wishes and needs for the future. Healthcare professionals are recommended to initiate conversations about biopsychosocial and existential issues, and palliative rehabilitation is recommended throughout the DMD lifespan with attention to individual needs, timing, and state of the disease.

The COVID-19 pandemic significantly increased the number of deaths within long-term care facilities (LTCFs) globally. Restrictions around visitation and social distancing were common; however, research conducted during the pandemic demonstrates that these policies impacted the ways in which end-of-life care was delivered in LTCFs.

This paper aims to explore the experiences of LTCF staff members in England in providing end-of-life care in the context of policies issued by the government at the time.

Secondary analysis of data collected from qualitative, semi-structured interviews conducted with 24 LTCF staff working across eight LTCFs in the north-west of England were analysed. Interviews were conducted with LTCF staff members, exploring their experiences of working in adult social care during the COVID-19 pandemic. Themes related to providing end-of-life care during this time were identified and analysed using thematic analysis.

Thematic analysis identified four key themes including: discrepancies in following COVID-19 UK government guidelines including visitation at end of life as an exception; the influence of staffing on delivering end-of-life care; utilising technology to substitute physical presence at end-of-life visits; and the emotional impact of delivering end-of-life care under COVID-19 restrictions.

The findings demonstrate the numerous challenges LTCF staff experienced when delivering end-of-life care during the COVID-19 pandemic in terms of the practicalities of managing resident deaths, facilitating visitation, and the associated impact on emotional well-being. Ensuring that all LTCF staff are trained to recognise end-of-life care, in the event of a future pandemic, will better equip LTCFs in providing high-quality care. It is paramount that guidance on managing family contact at end of life is consistent, while considering the impact of implementing such guidance on the mental and emotional well-being of LTCF staff members.

An ageing population has increased the need for home-based palliative care. General practitioners (GPs) are central to continuity of care, yet time pressure and organisational constraints can challenge person-centred practice grounded in relational familiarity with patients and families.

This study aims to explore how GPs navigate the relational familiarity in home-based palliative care and whether it functions as a basis or a bias for individualised care.

A secondary hermeneutic analysis was conducted, utilising data from two qualitative studies involving 21 GPs. These datasets focused on dignity-preserving care and shared decision making in palliative contexts. The hermeneutic circle was applied in an iterative process to interpret the in-depth interviews and focus group discussions.

A qualitative, explorative, and descriptive design grounded in hermeneutic methodology.

Two overarching themes emerged: (1) Relational familiarity: A cornerstone of complex dimensions, where familiarity enabled trust, continuity and tailored care; however, it also created overfamiliarity that narrows perspective, blurs boundaries and burdens GPs. (2) Variability in engagement and follow-up, which reflected differences in individual GPs’ interests, systemic constraints and the involvement of other healthcare professionals. While relational familiarity facilitated person-centred care, it was unevenly distributed, creating disparities in the quality of care.

Relational familiarity is key to person-centred palliative care, fostering trust and continuity. However, it can blur boundaries, create emotional strain and contribute to inequities compounded by systemic challenges. Interdisciplinary collaboration and flexible care models are needed to adapt to patient needs and ensure equitable access. Future research should examine the impact of relational familiarity and the role of systemic reforms to enhance palliative care.

About a decade after the introduction of palliative care teaching for undergraduate nurses and medical students in Uganda, it is unclear to what extent the course impacts students’ understanding, perceptions and orientation to deliver palliative and end-of-life care.

To (1) explore final-year nursing and medical students’ knowledge and perceptions of palliative and end-of-life care, (2) examine students’ orientation and perceived self-efficacy to provide palliative and end-of-life-care.

A multicentre exploratory qualitative study.

A total of 82 undergraduate nursing and medical students were selected from seven medical and nursing schools in Uganda. Data were collected through 10 face-to-face focus group discussions using a pilot-tested interview guide and analysed using inductive thematic analysis.

Five master themes emerged: (1) Palliative care as a concept with multiple meanings, (2) Misinformation about palliative care, opiates and pain management, (3) Students’ experiences of the course, (4) Dilemmas in knowledge and action, and (5) Palliative and end-of-life care as emotional labour.

Participants generally had inadequate and varied understanding of, and very few demonstrated low willingness and limited confidence to provide, palliative and end-of-life care. They blamed this mainly on the huge emotional labour of palliative/end-of-life care and inadequate teaching and/or limited clinical exposure.

In Japan, challenges such as bullying, school absenteeism, and rising rates of self-harm and suicide among children and young people have become pressing social concerns, reflecting patterns of emotional distress and social disconnection. Strengthening relational capacities for recognizing suffering and support has therefore emerged as an important educational and public health priority.

This study explores how children and young people participating in the Lessons of Life program (LLP) sessions articulate suffering, support, and emerging orientations toward compassion in their written reflections.

This practice-based qualitative study analysed written reflections collected between 2018 and September 2025 following the implementation of LLP sessions in formal educational settings across Japan. Certified trainers delivered 1059 sessions. Approximately 65,000 free-text reflections, produced as part of routine educational activities, were examined inductively to identify recurring patterns in how participants articulated experiences of suffering, support, and relational orientation.

Three overarching themes were identified: (1) noticing suffering and support; (2) reconstructing self-worth and meaning through relational support; and (3) emerging orientations toward compassionate action. Reflections included accounts of previously unspoken distress reframed, through being understood, into intentions for mutual care and supportive action.

This exploratory study suggests that principles derived from spiritual care may be meaningfully translated into educational contexts. Rather than demonstrating effectiveness, the findings are descriptive and hypothesis-generating, highlighting relational processes through which children and young people may reinterpret everyday suffering, experience themselves as “good enough” through being understood, and sometimes articulate orientations toward compassionate relationships.

Cultural silence around death and dying due to fear, anxiety, norms, taboos, and beliefs has led to social initiatives that are more ‘death-positive’. This silence has had a disproportionate impact on young adults. ‘Death literacy’ has emerged to support greater community awareness and understanding of end-of-life care options through education and dialogue. Arts-based approaches may be particularly relevant for young adults, yet research remains limited.

This knowledge translation project explored arts-based approaches for translating palliative care narrative data into creative forms, examining the feasibility of converting research narratives into accessible art forms that could facilitate engagement with death-related topics.

This project employed an arts-based knowledge translation approach, co-designing a course for undergraduate artists with researchers, artists and faculty to translate palliative care narratives.

The course utilized anonymized text from ethnographic research (K.S. PhD data) examining families and healthcare providers navigating paediatric transplant and palliative care, drawing from 145 journal entries by 18 healthcare providers who documented experiences of empathy, illness, suffering and death. Four undergraduate artists created diverse art forms including collages, sketches, digital drawings, storyboards and journey maps.

Over 25 artistic works illustrating death and dying experiences were created. The collaborative translation process revealed that undergraduate artists could effectively interpret and visualize complex palliative care narratives through diverse artistic approaches. Course evaluations and informal feedback indicated that artists found the experience meaningful and challenging, and expressed interest in further exploration of death-related topics.

The translation process produced accessible visual interpretations of complex illness narratives and, based on course feedback, appeared to facilitate openness to death-related discussions. These findings suggest arts-based translation approaches warrant further exploration as potential tools for enhancing death literacy, with future research needed to systematically evaluate their impact on young adults’ comfort and competence with end-of-life topics.

Individuals facing life-limiting illnesses undergo a profound transformation that encompasses significant physiological changes, in the level of medical care received, and a shift in overall goals of care. This transformation is irreversible and involuntary. However, individuals living with mental health conditions and life-limiting illnesses are not able to go through transformation due to diagnostic overshadowing. Previous research has examined the transformations experienced by caregivers in the context of spinal cord injuries, as well as by professional caregivers in palliative care, highlighting the complexities of their roles and the emotional adjustments they undergo. However, a notable gap in the literature exists regarding the transformation of individuals themselves who are confronting life-limiting illnesses.

This study explored the physical and psychological transformations of individuals living with a Life-Limiting Illness, focusing on how they interpret and understand these changes.

To explore this transformation, this study employed an interpretive hermeneutic phenomenological design, guided by an interpretivist-constructionist theoretical framework.

Fourteen qualitative interviews were conducted both face-to-face and via Zoom.

This study reveals that the illness trajectory of individuals living with a life-limiting condition consists of three stages, which can be metaphorically described as follows: (1) Chrysalis formation: This stage represents the muted voice, where the experiences of individuals with life-limiting illnesses are expressed and supported through the medical interventions provided by healthcare professionals. (2) Breakdown of the chrysalis: This stage is characterised by unsuccessful medical interventions and subsequent physical deterioration of the individual’s health. (3) Emerging from the chrysalis: In this final stage, the individual forms a new identity and finds new meaning in life as a result of living with a life-limiting illness.

The voice of persons with life-limiting illness is not stagnant; it undergoes various transformations at each stage of the illness trajectory. An understanding of this transformation process, along with the new identities that emerge at each stage, is crucial for designing and delivering palliative care services that effectively and timeously address the unique physical, emotional, and psychological challenges individuals encounter during each stage of their transformative journey.

Bereaved carers’ perspectives on the quality of end-of-life care in residential aged care homes (RACHs) provide critical insights into person-centred care delivery and support provision. Understanding bereaved carers’ experiences of formal and informal support, and their perceptions of staff responsiveness to residents’ values and preferences, is essential for improving end-of-life care standards.

To capture bereaved carers’ perspectives on formal and informal support received and the delivery of person-centred care within RACHs.

A descriptive qualitative study used free-text responses from an online survey for bereaved carers whose loved ones died in a RACH between 2021 and 2024 in Western Australia. Questions were structured according to the six priorities of the Western Australian End-of-Life and Palliative Care Strategy 2018–2028. Open-ended items allowed participants to expand on their experiences of social support before and after death and to comment on the extent to which residents’ and families’ values were taken into consideration. Thematic analysis examined carers’ perceptions of informal and formal support received and care provided.

Among 317 respondents representing 46 RACHs, five themes reflected carers’ perspectives: (1) Stretched thin: carer concerns about unmet needs; (2) Navigating gaps: carer experiences with end-of-life care; (3) Seeking involvement: carers’ role in care decisions; (4) Navigating decline: challenges in dementia care; and (5) Caring for the carer: the impact of RACHs and community support.

Bereaved carers perceived significant variability in person-centred support for themselves and the residents within RACHs, with quality often dependent on individual staff skills, confidence and communication style, and timely access to doctors or palliative care services. However, carers spoke positively about the support from the wider community. The expressed feeling to be cared “about” rather than just cared “for” could be explored by a collaborative compassionate communities approach to care integrated in RACHs. This may strengthen the capacity of the wider community to support carers before and after bereavement.

Heart failure (HF) imposes substantial physical, psychological, and social burdens on patients and caregivers. While the Educate, Nurture, Advise, Before Life Ends (ENABLE) programme has demonstrated potential benefits for HF populations, existing scholarship has yet to clarify how and to what extent health coaching interventions like ENABLE meet the expectations and needs of patients with HF and their caregivers.

To explore the experiences of patients with HF and caregivers who participated in a culturally adapted ENABLE programme in Singapore and to identify perceived benefits and persisting gaps to inform the design of future health coaching interventions.

A qualitative study involving in-depth individual or dyadic interviews with patients and caregivers who completed the ENABLE programme at the National Heart Centre Singapore (NHCS).

Participants were drawn from a wait-list randomised controlled trial of ENABLE at NHCS. Purposive sampling ensured diversity in age, illness severity, and study arm. Interviews were audio-recorded, transcribed verbatim, and analysed using Braun and Clarke’s reflexive thematic analysis approach.

Fourteen participants were interviewed. They described initial disorientation arising from unmet informational needs and uncertainty about how to live meaningfully with HF. Health coaching mitigated this by providing personalised information and consistent access to professional support, fostering a sense of control and security. Nonetheless, participants expressed a need for more concrete lifestyle guidance and emotional support, noting that education alone was insufficient to address psychological and existential distress. Some struggled to reconcile hope for recovery with awareness of decline and mortality.

The ENABLE programme reduced disorientation and enhanced reassurance through personalised and relational support. Future interventions should integrate actionable self-management guidance with psychosocial and existential support to address the intertwined informational, emotional, and meaning-related needs of people living with HF.

ClinicalTrials.gov Identifier: NCT05211882.

Cancer and circulatory diseases are overrepresented among the annual deaths in Sweden. Specialized palliative care (SPC) is considered complex, especially by cancer patients who have undergone long-term treatment. Relatives caring for a person with cancer within the home are faced with many demanding tasks.

To describe and map relatives’ experiences of the end-of-life care given in specialized palliative home care from a Swedish national perspective.

A register study was conducted with a mixed-method design using qualitative and quantitative descriptive data from relatives (n = 563). Reflexive thematic analysis was used for the qualitative data, followed by a quantifying process inspired by Sandelowski.

Two main themes were identified, with related themes and subthemes: “Home—a safe, dignified, and good place for dying” and “Home—a challenging, lonely, and unworthy place for dying.” As a place of dying during SPC, home provided both security and challenging events. It offered security for the family and upheld their dignity with the presence and support of competent healthcare professionals (HCPs). Conversely, challenging events emphasized how the relatives were unprepared for their loved one’s death and struggled to cope with the end-of-life situation. Some relatives felt that too much of the responsibility was left to them. However, the quantitative data showed that 99.1% of the relatives knew where to find urgent help during the last week of life, and the quantified qualitative data showed that HCPs were often available and supportive.

Specialized palliative home care must strive to minimize challenging events that relatives experience during their loved one’s end of life and reinforce protective factors such as the presence of HCPs. As the end-of-life period is challenging for families, adequate support and competencies must be secured. Otherwise, there is a risk of increased family suffering and relatives having difficulties with grief after the death.

Pain relief is a fundamental human right, yet evidence suggests access to analgesia is not equitably distributed. People with severe mental illness (SMI) experience significant disparities in healthcare during life, which may also be mirrored at the end of life. This systematic review examines the extent of inequities and underlying factors contributing to disparities in pain care for people with SMI and life-threatening diseases.

A mixed-methods systematic review of MEDLINE, EMBASE, AMED, CINAHL, PsycINFO and EThOS (January 2000–September 2024), hand-searching key journals and citation tracking. Two reviewers independently screened studies, and data were extracted using a standardised approach. A narrative synthesis was used to integrate findings.

Two thousand nine hundred seven records were identified, with eight studies meeting the inclusion criteria. Study quality ranged from ‘very low’ to ‘high’. All quantitative studies were retrospective analyses of routine healthcare data, examining analgesic prescribing for people with schizophrenia. Despite variability in outcome measures, all studies found that individuals with schizophrenia received significantly less analgesia than those without SMI. Four qualitative studies explored clinicians’ views on providing pain care to patients with SMI; only one study included patient experiences. Identified barriers to optimal pain management included patient-related factors (e.g. difficulties in pain expression, behavioural symptoms), clinician-related factors (e.g. diagnostic overshadowing, stigma) and systemic issues (e.g. fragmented care, restrictive prescribing practices).

There is a striking lack of research on pain assessment and management for people with SMI and life-threatening illnesses, yet available evidence indicates clear inequities in care. These disparities may be driven by intersecting structural, social and clinical barriers, contributing to poorer end-of-life experiences. Addressing this gap requires urgent action from clinicians, policymakers and researchers. Future work should combine population-based studies to quantify prescribing disparities with qualitative research involving people with lived experience of SMI and their carers. Participatory, co-produced approaches are essential.

Person-centred care has become the cornerstone of quality palliative and end-of-life care. Yet, there is a dearth of both practical guidance and tools to operationalize how to ensure palliative end-of-life care is optimally person-centred. Noting this lacuna, a new hospice in Eastern Canada developed and piloted their own tool, called the SELFY (Share, Explore, Learn and Focus on You!), the intention being to standardize their institution’s commitment to high-quality person-centred hospice care.

This study evaluated and refined the SELFY with the goal of ensuring its evidence-based foundation and adaptability for other palliative end-of-life care contexts.

We used a sequential mixed-methods design, including a rapid literature review, an international survey, and a qualitative study. The results of each method informed the design of the subsequent method.

We started with a rapid literature review, the results of which were analysed with a descriptive synthesis. Following, we built an international survey, analysed with descriptive summaries. Finally, we conducted semi-structured interviews and focus groups, analysed with the SAMMSA analytic approach. Final mixed-methods analysis included a synthesis of all data, followed by the refinement of the SELFY for immediate use in the original setting, and the creation of a ‘plug and play’ toolkit for trialling the SELFY beyond the initial setting.

The literature review and survey uncovered six tools with relevance for refining the SELFY. Qualitative findings supported the current SELFY and provided areas for refinement for the initial context. Overall, the data supported person-centred care as foundational to hospice practice, revealed that there is little guidance as to how to ensure person-centred care is practised consistently, and demonstrated how the SELFY brought pride to hospice workers by prioritizing and operationalizing hospice values in the workplace.

This study enabled our team to evaluate and refine the SELFY through published evidence and hospice practice. The next steps in our program of research include tailoring and testing the SELFY in additional care settings, including free-standing hospice, palliative care, and acute care.

A key barrier for people with a life-limiting illness being able to remain in their home is carer burnout. Carer fatigue also puts more pressure on health services and leads to worse outcomes for carers and their loved ones. However, carers are resistant to using respite care because of concerns around quality of care, the nature of the clinical environment and leaving their loved one behind. There is evidence that greater carer uptake of respite reduces burnout, enhances carer resilience and means that more people get their wish of dying at home.

This study reviews a novel respite service in a suburban environment in the Australian capital, Canberra, to assess if a non-clinical home-like setting increases the likelihood of carers taking short-term breaks.

Separate, semi-structured interviews, of 10–60 min were conducted with clients, carers, staff and volunteers about their lived experiences at a pilot respite centre, ‘Leo’s Place’, run by Palliative Care ACT (Australian Capital Territory). The question guide was developed for this study, drawing on current literature and the needs of the research and the subject population.

This study employed Reflexive Thematic Analysis, an iterative and inductive approach to constructing themes from the data, providing a rich description of the participants’ experience.

Interviews were conducted with 5 clients (alone), 6 carers (alone) and 12 client/carer dyads (together). We captured 31% of service users with either (or both) a client/carer interview during the study period. The evaluation identified three key themes. First, Leo’s Place was a lifeline where carers found the non-clinical, home-style respite welcoming and supportive. Second, this allowed carers to take a break as they felt that they could leave their loved one safely and comfortably. Last, Leo’s Place operated as an advice and support hub.

Non-clinical respite care in a home-like setting can relieve the burden of care and has the potential to reduce pressure on health services and provide better outcomes for carers and their loved ones. Making respite care desirable and outside of clinical settings increases the willingness of carers to use such services.

Accurate survival estimation is essential for decision-making in advanced cancer care. However, clinical judgment alone often tends to overestimate survival. The performance of prognostic tools has scarcely been explored in Latin American populations.

To prospectively evaluate and compare the predictive performance of four prognostic scales: the Palliative Prognostic Index, the Performance Status–Palliative Prognostic Index, the Palliative Prognostic Score, and the Delirium-Palliative Prognostic Score, against the clinical judgment of specialists in a Colombian cohort.

An observational, analytical, prospective cohort study was conducted.

The study included 166 patients with advanced cancer admitted to a specialized Palliative Care Unit in Colombia. Participants were followed for up to 90 days or until death. We compared the discrimination of the scales using Harrell’s Concordance Index (C-index) and area under the receiver operating characteristic curve at 7, 30, and 90 days. Calibration was assessed using calibration plots.

Specialist clinical judgment, the Palliative Prognostic Score, and the Delirium-Palliative Prognostic Score demonstrated excellent discriminatory capacity for short-term survival prediction, with a concordance index greater than 0.8. Clinical judgment tended to underestimate 7-day survival, while all tools showed a tendency to overestimate 90-day survival. A high short-term mortality rate was observed, with nearly 50% of patients dying within 30 days of admission.

In specialized palliative care settings in Latin America, combining expert clinical judgment with the Palliative Prognostic Score or its delirium variant is recommended for prognostication. The Palliative Prognostic Index and its performance status-based variant are useful alternatives in nonspecialized settings. The high short-term mortality observed highlights a systemic issue of late referral to palliative care services in the region.

Rates and patterns of inpatient palliative care (IPC) use in metastatic upper urinary tract carcinoma (mUTC) are largely unknown.

To assess temporal trends and predictors of IPC in patients with mUTC.

Relying on the National Inpatient Sample (2008–2019), we identified 3563 mUTC United States inpatients.

Estimated annual percentage changes (EAPC) analyses as well as logistic regression models addressing IPC use were fitted. Subgroup analyses addressed IPC use according to the number and location of metastatic sites.

Of 3563 mUTC inpatients, 540 (15%) received IPC. Overall, the rate of IPC increased from 2 to 22% between 2008 and 2019 (EAPC +10%). In subgroup analyses, the highest increase in IPC use was observed in patients with liver metastases (from 3 to 33%; EAPC + 11%), in patients with bone metastases (from 3 to 29%; EAPC: +10%), and in patients with three or more metastatic sites (from 0.5 to 31%; EAPC: 10%; all p ⩽ 0.003). In multivariable logistic regression models, liver metastases (odds ratio (OR) 1.91, 95% confidence interval (CI) 1.53–2.39), bone metastases (OR 1.83, 95% CI 1.46–2.28), and contemporary year of admission (OR 1.93, 1.57–2.38; all p < 0.001) independently predicted higher IPC rates. Limitations include the retrospective nature of the inpatient database.

The IPC rate in mUTC was very low (15%). However, this rate increased to approximately 22% in 2019. The highest IPC rates were recorded in contemporary liver (33%), bone (29%), and three or more metastatic sites (31%) United States inpatients. Therefore, clinicians should be sensitized to early IPC use in mUTC patients in general as well as in other metastatic distribution patterns.

Women who have undergone mastectomy often report fatigue, shoulder dysfunction, and a diminished quality of life. Structured educational and supportive care programs have the potential to facilitate improved functional recovery and overall well-being post-surgery.

This research aimed to evaluate the effect of the educational supportive care program on fatigue, shoulder functional ability, and quality of life among women after mastectomy.

A quasi-experimental research design was conducted at Tanta Cancer Center, Gharbia Governorate, Egypt (affiliated with the Ministry of Health and Population). A purposive sample of 84 women undergoing mastectomy was included in the study (intervention group included 42 women, and control group included 42 women). Four tools were utilized (A demographic and cancer-related data sheet, cancer-related fatigue assessment (EORTC QLQ-FA12), shoulder pain and disability index (SPADI), and Functional Assessment of Cancer Therapy—general (FACT-G)). Means, standard deviations, frequencies, percentages, independent t test, and Chi-square test were used for statistical analysis.

The results of the present study showed that, during the first week post-mastectomy, no statistically significant difference was observed between the two groups toward fatigue level, shoulder pain and disability, and all quality-of-life domains. On the other hand, a highly statistically significant improvement was observed among the study group at 6 weeks and 3 months post the intervention, in which the study group showed significantly lower levels of fatigue, reduction in shoulder pain and shoulder-related disability, and quality-of-life scores increased in all domains. Additionally, there was a significant negative correlation between total quality-of-life scores and total fatigue, shoulder pain, and shoulder disability in both the study and control groups at all measurement times.

The findings indicate that the educational supportive care program was associated with improvements in fatigue, shoulder functional ability, and quality of life among women after mastectomy. However, the quasi-experimental study may limit causal interference and the generalizability of the findings.

In order to enhance women’s functional status and their quality-of-life post-mastectomy, educational supportive care should be integrated into routine care.

On 1 January 2022, assisted suicide became legal in Austria with the enactment of the Dying Decree Law (Sterbeverfügungsgesetz, StVfG). This law has posed complex practical and ethical challenges for nursing facilities and hospitals. Medical and nursing directors are tasked with guiding their staff amidst legal uncertainties, emotional burdens, and limited institutional dialogue.

This study aimed to assess directors’ self-reported knowledge of the law, their experiences managing assisted suicide requests, their perceived adequacy of support in navigating the legal framework, and the presence of institutional guidelines.

A cross-sectional mixed-methods study.

An online questionnaire was used to collect data from 239 medical and nursing directors across all nine federal states of Austria (mean age = 49.5 years, SD = 8.5; 65.7% female, 32.2% male; 23.7% working in faith-based institutions, 61.9% in non-faith-based institutions, and 14.4% prefer not to disclose). Quantitative data were analysed using chi-square tests, t tests, and ANOVAs, while thematic analysis was applied to open-ended responses.

44.0% of directors knew the regulations of the Dying Decree Law but were insecure in regards to the application in practice, while 13.4% of directors reported no familiarity with Law at all. Legal familiarity correlated with gender (p = 0.020, V = 0.183) and institutional religious affiliation (p = 0.019, V = 0.197). Satisfaction with institutional guidelines was linked to gender (p = 0.004, r = 0.15), religious affiliation (p = 0.003, r = −0.15), and institution type (p = 0.011, η² = 0.126). While 36.2% reported no institutional guidelines on assisted suicide, 13.8% were unaware of their existence.

The findings reveal knowledge gaps, institutional disparities, and limited guidance on the Dying Decree Law. Directors report insufficient preparedness, highlighting the need for clearer institutional guidelines and enhanced legal, ethical, and psychological support.

This study was registered in the Open Science Framework (OSF) at https://osf.io/bgpsa.

Knowledge about the structure and type of palliative psychological care is limited and heterogeneous in most countries. Due to the lack of legal regulations in Germany, it is unclear how psychologists are integrated into multiprofessional palliative care teams (MPCT).

To describe how palliative psychology is organised in the various specialist palliative care settings for adults in Germany, how psychologists/psycho-oncologists assess their professional attitude and how satisfied they are with their work.

Online survey with psychologists/psycho-oncologists working in specialist palliative settings in Germany.

The quantitative data was analysed descriptively and inferentially (correlations, group differences) using SPSS; category-based evaluation of free text comments.

One hundred and five of 210 respondents worked in a predominantly specialist palliative setting, mainly on palliative care units (137/210), mostly in combination with other settings (158/210), with a small proportion working in specialist palliative home care (29/210), palliative care support team within a hospital (28/210) or a hospice (16/210); the professional attitude did not differ between the predominantly and less palliative setting or the levels of professional experience. A high level of satisfaction with integration into and perceived appreciation by the MPCT, perceived effectiveness, supervision/intervision/exchange within the MPCT and overall job satisfaction was reported; when dissatisfaction was mentioned, the most common reasons given were a lack of resources, unfavourable structures or communication deficits; the predominantly palliative setting had a positive effect on satisfaction with integration into the MPCT, perceived effectiveness and overall satisfaction; a higher level of professional experience also showed a positive influence on perceived effectiveness.

Although psychologists/psycho-oncologists were present in all palliative settings, they were not regularly a core member of the MPCT. Besides structural differences in palliative psychological care, there was also heterogeneity in the qualifications of the psychologists/psycho-oncologists. These results make the structure of psychological care in palliative care facilities in Germany more transparent and could be used to promote palliative psychology expertise as an integral part of multiprofessional care.

Compassionate communities are a key public health palliative care strategy for addressing the social determinants of death. However, their evaluations often prioritize health indicators, overlooking the intended social and cultural transformations that are central to this social model. This study addresses this research gap by analyzing the transformative outcomes emerging from two distinct community initiatives.

Building on our prior analysis of community engagement processes, this comparative ethnographic analysis examines the transformative outcomes of two distinct compassionate communities in Montréal, Canada (2021–2023). Data from 84 h of participant observation and 26 semi-structured interviews with 22 participants were analyzed to identify the social and cultural changes resulting from the community-led and institutionally-led models.

Findings demonstrate that local contexts act as active forces shaping which social determinants of death are prioritized, specifically overdose stigma in Centre-Sud and fraud-induced social death in the West Island, thereby dictating unique engagement trajectories toward transformation. A universal outcome was the creation of safe spaces to break the death taboo, which addressed the mismatch between private loss and the lack of collective social scripts. This facilitated the emergence of “death sociability”: a reciprocal mechanism for experiential learning grounded in shared recognition of human finitude, which actively builds cultural capital in its embodied (new skills and language), objectified (rituals and shared narratives), and institutionalized (formal recognition of community practices) forms.

Death sociability is a core mechanism through which compassionate communities achieve transformative change, addressing both biological and social mortalities. As an empirically grounded concept, it offers a novel theoretical lens for future research to track social and cultural impacts beyond health metrics. Therefore, supporting the creation of safe spaces where death sociability can thrive is crucial for building the cultural capital needed to advance equity in social determinants of death.

Death literacy can act as a public health asset that enables individuals and communities to navigate end-of-life care with confidence and competence. It encompasses knowledge, skills, experiential learning, and social action. In the United Kingdom, low levels of death literacy may hinder equitable care and contribute to avoidable harms.

The study had three aims: (i) to assess death literacy in the East of England using the Death Literacy Index (DLI) to inform applied policy research; (ii) to explore sociodemographic and experiential factors associated with DLI scores; and (iii) to examine how various knowledge domains function as community assets or indicate areas in need of targeted intervention.

We conducted a cross-sectional survey with adults aged 18 years and over across six areas in the East of England. The survey included sociodemographic questions, the 29-item DLI, and free-text responses. Quantitative analysis used ordinary least squares regression to identify associations between DLI scores and covariates. Qualitative data were analysed using a framework approach, integrating the Quintuple Aim for health care improvement and DLI domains, including an added Relational Knowledge domain to the death literacy framework dimension for the purposes of the analysis.

Of 1725 respondents, 1224 completed the survey. The mean DLI score was 5.8/10. Experiential Knowledge was the highest scoring DLI domain (mean = 7.3/10); Factual Knowledge scored lowest (mean = 4.7/10). End-of-life training and recent bereavement were strong predictors of higher DLI scores. Qualitative themes highlighted under-resourced support systems, need for improved coordination of statutory services, and importance of Relational and Community Knowledge.

The DLI can act as a pragmatic tool for guiding civic action and informing public health strategy. Mobilising death literacy requires relational approaches, community engagement, and equity-focused commissioning. Recognising death literacy as both a public health asset and a civic capability can contribute to population health and support sustainable end-of-life care systems. Social capital and collective action are essential to mobilising death literacy at scale.

Carers are individuals who provide unpaid care to family members and friends with disabilities, medical conditions, mental illness, or who are frail and aged. The contribution of carers to the Australian health, aged care, disability, and social care systems is significant. However, they face high levels of emotional, social, physical, and financial burdens. The Australian Government has recently introduced policy reforms to improve recognition of carers. However, there is limited evidence on research priorities to facilitate the translation of policies into practice.

To involve Australian stakeholders to a) identify evidence gaps and research needs; and b) set research priorities for carers within the context of ageing, palliative care and end of life.

Stakeholder consultation study for research priority setting.

Australian stakeholders with expertise in areas related to carers, aged care, and palliative care were engaged through an online survey, a research roundtable and a focus group to discuss research priorities for carers. The survey qualitative responses, notes from the roundtable, and focus group transcript have been summarised and analysed thematically, using NVivo 14 qualitative software.

Two main considerations as found from the study are ‘what to research’ and ‘how to research’ to improve recognition and support of carers in Australia. Research priorities identified include recognition and early identification of carers, timely and equitable access to support services, helping carers navigate services, support during the transition of care, post caring, including grief and bereavement support, evaluation of existing services, and carer self-care and wellbeing. Participants commented on the importance of research that engages carers meaningfully, respectfully, and in a timely and flexible manner to ensure maximum impact.

This study guides the design of carer-centred research to facilitate the translation of carer policies into practice. It also assists in evaluating the effectiveness, cost-effectiveness and sustainability of existing and new support services.

While healthcare costs continue to grow, an aging population along with rising chronic diseases are increasing demand for high-quality end-of-life care.

Our objectives include calculating hospital cost sub-categories, such as laboratory, medication, nursing, physician, and social counseling, and evaluating the economic impact of specialist palliative care (sPC) on overall hospital costs per stay and per day of severely ill and dying patients who died at a Swiss university hospital between 2016 and 2022.

Retrospective, observational cohort study with a control group.

We used administrative cost data from the final hospitalization of patients who died at a university hospital in Switzerland. We compared hospital costs of patients receiving care, including sPC, with those of individuals receiving usual care (UC). We defined timely sPC referral as initiating within 3 days of admission. We used a generalized linear model—assuming gamma-distributed errors and with a logarithmic link function—adjusted by inverse probability weighting to adjust for patient characteristics differences.

Adjusted overall hospital costs per stay were higher for sPC (Swiss francs (CHF) 31,350 (95% confidence interval (CI) 28,590–34,854)) compared with UC patients (CHF 20,351 (95% CI 18,454–22,596)); mean ratio of 1.54 ((95% CI 1.34–1.77), p < 0.001). In contrast, adjusted overall daily costs were lower for sPC patients (CHF 400); mean ratio 0.87 ((95% CI 0.79–0.97), p = 0.005), mainly due to reduced diagnostic and medication costs. However, longer hospital stays (sPC 11 days vs UC 5 days) offset daily cost reductions. UC patients had nearly double the total costs of timely sPC referral patients (cost ratio 0.52, CI 0.46–0.58).

To capture intended and unintended effects and avoid oversimplified cost debates, hospital cost analyses of sPC should examine detailed cost sub-categories rather than only total costs. Cost optimization could be reached by timely transfer of patients with sPC needs. Future studies should investigate barriers to transitioning patients across care settings to improve both quality and cost-effectiveness.

The COVID-19 pandemic exacerbated the need for palliative care (PC) and exposed gaps in PC provision in South Africa’s already-strained healthcare system. PC is a neglected yet core component of South Africa’s public healthcare sector.

The study aimed to describe the impact of the COVID-19 pandemic on PC services in one healthcare district of South Africa, the Cape Metro Health District. Specifically, the study objectives were to describe the PC response to the COVID-19 pandemic, and healthcare managers’ perceptions of PC provision during the pandemic.

Data for the study were derived from a desktop analysis of documents relating to PC service delivery over the pandemic, and from focus group discussions held with 19 senior healthcare managers.

The COVID-19 pandemic expedited integration of PC services into the health system and raised awareness of the importance of PC service delivery. It facilitated the allocation of increased resources (financial, infrastructural, and human resources) and enabled the rapid development of training material, in situ support for clinicians and the development of patient referral mechanisms. It was a stimulus for many people to learn about PC and influenced the perspectives of those working in healthcare, including managers, many of whom experienced the loss of family members or friends, foregrounding the importance of PC.

Planning for future pandemics needs to include recognition of and ongoing care for palliative care patients and factoring in an increased demand.

An independent evaluation sought to understand the broader impacts of the West Australian National Partnership Agreement for Comprehensive Palliative Care in Aged Care projects on residents and their families.

This study aimed to gain a bereaved carer perspective on palliative care in Western Australian residential aged care homes (RACHs), identify challenges/gaps in care provision, and consider how service delivery can be improved to meet community needs and expectations.

An online survey of bereaved family carers of people who died in RACHs from 2021 to 2024.

The questionnaire was structured according to the six strategic priorities outlined in Western Australia’s End-of-Life and Palliative Care Strategy (2018–2028). Descriptive analyses were conducted.

Three hundred and seventeen bereaved carers across 46 RACHs responded. 40.6% of carers reported their relative accessed visiting palliative care services during their residential aged care stay, 30.6% did not access, and 28.8% did not know. Overall, bereaved carers whose relatives accessed palliative care reported better experiences for residents and themselves compared with those who did not. However, the respondents called for a more person-centred care system encompassing residents’ needs, more timely information, better communication, and appropriate resources to feel supported before and after bereavement. They also wanted to be more involved in care decisions undertaken within RACH. These needs were reflected in priorities 2 (care is person-centred) and 4 (families and carers are supported), which were rated the lowest among the six priorities.

This study makes three contributions to ageing policy discourse. First, it provides empirical evidence that despite policy directives towards person-centred care, residential aged care continues operating through institutional “caring for” rather than relational “caring about” frameworks. Second, it reveals implementation gaps in palliative care policies, particularly in bereavement support and family involvement in care decisions. Third, it proposes a compassionate communities approach to care as a social practice and policy framework addressing both quality concerns and sustainability challenges.

Palliative care access remains limited in Lebanon, particularly outside the capital. Data on public palliative care knowledge and perceptions in general and among disadvantaged populations remain insufficient.

This study aimed to assess palliative care awareness and knowledge among community users of a non-governmental organization serving socioeconomically disadvantaged populations in Tripoli, north of Lebanon.

A cross-sectional study was conducted using a structured survey targeting 400 individuals using the Palliative Care Knowledge Scale (PaCKS) in the colloquial Arabic language. Data on palliative care awareness and background information were collected. Multivariable binary logistic regression using stepwise backward selection was conducted to identify predictors associated with palliative care knowledge levels and common misconceptions.

Low awareness of palliative care was observed, with 95.8% of participants reporting never having heard of it. PaCKS’s mean score was 9.24 ± 2.89; 40.8% (N = 163) had high scores (11–13), 42.8% (N = 171) had moderate scores (7–10), and 16.5% (N = 66) had low scores (0–6). Common misconceptions included perceiving palliative care to be limited to hospital care, to cancer, and to end of life. Higher educational attainment was a strong and stable predictor of palliative care knowledge and common misconceptions. Participants with middle or high school education had 1.754 higher odds (p = 0.013), and those with university education had 4.938 higher odds (p < 0.001) for higher knowledge compared to participants with no or primary education, potentially indicating a graded association. More than half of the participants expressed interest in having information about palliative care made generally available.

Our results indicate low awareness and several misconceptions about palliative care along with the presence of health inequities. Low educational attainment, mainly linked to socioeconomic disadvantage, may limit health literacy, and as such, reduce access to information and the ability to understand complex concepts such as palliative care. These findings highlight the urgent need for a collaborative, multi-sectoral system-thinking, community-centered, and equity-driven approach that involves the community, researchers, healthcare providers, and policymakers.

The rising prevalence of kidney failure is a global concern. Individuals with kidney failure experience increased symptom burden, reduced quality of life, and increased healthcare utilisation. Kidney supportive care (KSC), a palliative-aligned approach that emphasises comfort, dignity, and holistic support for patients and families is offered as an alternative to dialysis treatments. Little research has explored how patients and caregivers experience and decide on conservative kidney management and KSC.

To explore the lived experiences of patients with kidney failure and their caregivers in treatment decision-making for conservative kidney management.

A qualitative inquiry using an interpretative phenomenological approach was conducted.

Semi-structured interviews were conducted with patient-caregiver dyads to understand patient and caregiver lived experiences in choosing conservative kidney management. Patients who were aged 21 or older with Chronic Kidney Disease Stage G5 (eGFR ⩽15 ml/min) and had chosen KSC, were recruited along with their caregivers. Semi-structured, in-person interviews were conducted with nine patients and eight caregivers. Interviews were transcribed verbatim. Two researchers performed independent coding and identified meanings and themes which alluded to the lived experiences of individuals under KSC and their caregivers.

Four themes captured the lived experience and decision-making journey: (1) lived reality of kidney failure, (2) navigating treatment decision making, (3) the role of family and healthcare providers, and (4) facing the future and perceived needs in supportive care. Decisions were influenced by personal values, comorbidities, age, clinician recommendations, fear of suffering, and witnessing others on dialysis. Most decisions involved collaborative discussions between patients, families, and clinicians. Participants expressed the need for enhanced continuity of KSC and community-based early palliative care access.

Decisions to pursue conservative kidney management are multidimensional, shaped by patients’ values, social contexts, and healthcare interactions. Understanding these factors ensures informed choices and better support during the decision-making and care transition process to KSC. Findings highlight need to improve patient-provider communication and community support within an early palliative care-integrated approach.

To explore students’ experiences of taking part in a Death Café and whether they consider the Death Café as being a useful educational tool.

Talking about death remains a taboo for both nursing professionals and students. Recognizing the importance of open dialogue, Death Cafés were established to provide safe spaces for individuals to share thoughts and feelings on this topic.

A qualitative, exploratory, and descriptive study employing a descriptive analytical approach.

This study was conducted between April 2025 and July 2025 at a public university in Catalonia. The Death Café was a mandatory activity within the palliative care course for all third-year bachelor/undergraduate nursing students. After the course, students were invited to participate in a questionnaire containing 12 open-ended questions, and all 39 students agreed to participate. Data were analyzed using Sandelowski’s qualitative descriptive approach.

Following questionnaire analysis, 24 units of meaning, categorized into 7 subcategories and 2 categories emerged: (1) death without fear: normalizing dialogue and communication. The Death Café fostered speaking about death freely and without prejudices; (2) emotional management and group support in the learning process. Students reported a sense of emotional relief when speaking about death and considered it a tool that can enhance their capacity to support patients and families.

Most participants regarded the Death Café as a comfortable and enriching experience that provided a respectful environment for open conversation about death. The activity reduced perceived fears and taboos, promoted emotional reflection, and encouraged the sharing of diverse perspectives.

Mental health conditions, particularly depression and anxiety, are common among individuals with life-limiting illnesses and significantly affect their quality of life. However, little is known about their burden in palliative care in rural Malawi.

This study assessed the prevalence and factors associated with depression and anxiety among adult patients enrolled in the palliative care program in Neno District, Malawi.

A cross-sectional study was conducted across nine health facilities from January to June 2024. Using simple random sampling, 152 adult participants were selected from the Neno district palliative care database. Quantitative data was collected using the PHQ-9 and GAD-7 as screening tools for depression and anxiety. The analysis used descriptive statistics and multivariable ordered logistic regression to identify factors associated with depression and anxiety, with results reported as adjusted odds ratios and 95% confidence intervals.

Of 152 eligible patients, 151 completed the study (99% response rate). The mean age was 67 years (SD = 16.3); 78% (n = 117) were female, and 66% (n = 99) were unmarried. Depression was present in 72% (95% CI: 65.0%–79.4%, n = 109) and anxiety in 70% (95% CI: 62.1%–77.0%, n = 105). Suicidal ideation was reported by 3% (n = 4) of participants. Depression and anxiety were strongly associated (depression model: aOR = 1.490, p < 0.001; anxiety model: aOR = 1.506, p < 0.001). Older age was associated with higher anxiety severity (aOR = 1.027, p = 0.016). No other sociodemographic variables were significantly associated with either outcome.

The study findings underscore the high burden of depression and anxiety among patients under a palliative care program in Neno District, age-trailed mental health in chronic ill patients, and integration of mental health services and palliative care programs. Future research should examine how depression and anxiety develop in older adults to tailor interventions for this population.

Patients with advanced non-small-cell lung cancer (NSCLC) frequently experience severe symptoms and functional decline, underscoring the need for early end-of-life (EOL) care discussions to improve care quality. Additionally, enhancing patients’ death literacy may strengthen these discussions. However, how patient characteristics influence death literacy in this population is largely unknown.

This cross-sectional study explored baseline levels of death literacy and examined associated patient characteristics in advanced NSCLC.

A cross-sectional study was conducted.

A total of 103 patients aged ⩾18 years with stage IIIB or higher NSCLC who had completed at least first-line cancer treatment were recruited using convenience sampling. Data were collected between June 2024 and June 2025 using structured questionnaires assessing sociodemographic, medical conditions, prior EOL care experience, and death literacy (using the traditional Chinese version of the Death Literacy Index, score range = 29–145). Descriptive statistics, Pearson’s correlation, independent t test, and stepwise regression were used to analyse associations between patient characteristics and death literacy.

The mean participant age was 61.62 ± 10.86 years, and the mean Karnofsky Performance Score was 67.57 ± 12.48. Many had prior experience of EOL care provision (58%) and had lost a relative (90%), but few had discussed EOL care with a physician (29%). Overall, death literacy was moderate (94.08 ± 16.45). Higher death literacy was significantly associated with experience of EOL care (β = 13.390, p < 0.001), having had an EOL care discussion with a physician (β = 10.901, p < 0.001), and being a women (β = ‒8.671, p = 0.001). These factors explained 37.1% of the variance in death literacy (F = 21.030, Adjusted R² = 0.371).

Healthcare providers should recognize patients’ lived experiences as important contributors to fostering open conversations around EOL care preferences. Interventions such as the Life Journey Tea House or broader public health strategies may help stimulate reflection and encourage dialogue.

Parents of children receiving palliative care often experience significant caregiving responsibilities and unmet support needs, emphasising the importance of systematic assessments and tailored interventions.

This study examined the feasibility of the Carer Support Needs Assessment Tool Intervention Paediatric (CSNAT-I Paediatric) within a national unit for children’s palliative care in Norway. It further explored the support needs of parents of children with severe neurological impairments, including neurometabolic conditions.

A non-randomised, multi-method feasibility study.

Feasibility was examined across domains of acceptability, demand, implementation, practicality, integration, and adaptation. Cognitive interviews with parents (n=34) were conducted to examine acceptability and needs for adaptation. Overall feasibility from parents’ perspectives were measured using an electronic questionnaire (n=12), and data on parents’ support needs were extracted from the children’s medical records. Intervention providers’ perspectives on acceptability, demand, practicality, implementation and integration were explored in a focus group interview (n=6).

Parents found the CSNAT-I Paediatric acceptable and all domains of the assessment tool were considered relevant, although they suggested adaptations to better capture care coordination and the child’s daytime activities. Parents’ support needs were heterogeneous and often required action from multiple parties. Intervention providers viewed the CSNAT-I Paediatric as useful for tailoring services to families but identified practical and implementation challenges in following up on identified needs.

The CSNAT-I Paediatric is feasible in children’s palliative care settings. Effective implementation requires interprofessional and intersectional collaboration among stakeholders to meet families’ complex support needs, and further refinement could enhance its utility.

Although palliative care embraces person-centred principles and autonomy to meet patients’ holistic needs, autonomy is not automatically assured and few studies cover patients’ lived experiences. Consequently, current thinking about dying and palliative care practices would benefit from an in-depth understanding of patient experiences. Such research provides an opportunity to challenge assumptions about patient preferences for the amount and type of care and decision-making involvement, especially for the way patient preferences may vary between individuals and change through the palliative care process.

This project aimed to investigate patient conceptualisations and preferences for autonomy while receiving palliative care.

This qualitative phenomenological study explored patients’ experiences of autonomy in home-based palliative care in Queensland, Australia.

Face-to-face semi-structured interviews were audio-recorded with two participants to learn their perspectives regarding autonomy in palliative care. Transcripts were analyzed using interpretative phenomenological analysis.

Four themes were identified: (a) my involvement in healthcare decisions, (b) change to my autonomy during illness progression, (c) self-assessing my abilities to exercise autonomy and (d) my coping mechanisms for loss of autonomy. Palliative care patients perceived and managed their autonomy amidst their illnesses, revealing a sense of loss of autonomy extending beyond healthcare into many daily activities. Participants wished to exercise autonomy in nuanced ways, varying in intensity across many aspects of their lives, underscoring the importance of recognising and respecting individuals’ wishes for autonomy.

Partnering with individuals receiving palliative care provided authentic insight into their level and experience of autonomy. While many health practitioners aim to facilitate autonomy in patients receiving palliative care, flexibility is required to recognise variable patient needs. Such approaches will further ensure autonomy moves beyond a singular view of healthcare decision participation, to encompass changes to preferences during palliative care, while recognising how patients exercise autonomy via self-assessment and coping mechanisms.

Not applicable.

American Indian (AI) persons with advanced cancer (PwAC) in South Dakota have seen increased rates of cancer incidence and mortality compared to national rates. These inequities are driven by social determinants of health. Providing early palliative care is highly important for rural PwAC but is sparsely available in rural South Dakota.

To explore cancer care experiences and patient symptoms and caregiver burden among AI and rural PwAC, and their family caregivers (FCGs), to understand the barriers and opportunities for adapting an early palliative care intervention.

Descriptive study design reporting on the qualitative and quantitative data collected.

PwAC and FCG participants were recruited from a rural healthcare facility delivering cancer care and serving AI tribal and rural/frontier populations. Quantitative data were collected using online surveys to discover symptoms and caregiving burden among PwAC (n = 18) and FCGs (n = 12), respectively. These participants were invited to semi-structured interviews to elicit perspectives of rural cancer care delivery (n = 11 PwAC and 8 FCGs).

PwAC experience moderate symptom burden with 83.3% lacking energy, 77.8% feeling drowsy, and 72.2% feeling pain. FCGs experience high caregiver burden across all three subscales of the caregiving scale. Qualitative analysis found an overarching category of “Healthcare Fragmentation Amplified by Living in a Rural/Frontier Location” with three underlying codes: “Being Seen and Heard: Value-Based Connection to Distant Resources,” “Facilitating Decision Making from Afar,” and “Problem Solving Skills and Solutions.”

This study demonstrates that rural cancer care is challenged by multiple factors, including fragmented healthcare, lack of healthcare infrastructure, and vast travel distances. This greatly impacts PwAC and FCG’s ability to feel seen and heard, make decisions, and problem-solve. Supportive programs designed for the local rural context are imperative to improve the quality of life for rural PwAC and their FCGs.

Person-centred care requires interdisciplinary collaboration. Within palliative medicine, collaboration is further necessary to meet the increasing global demand for palliative care. One area of developing collaboration involves Emergency Medical Services. However, there remains a dearth of research exploring patient and family member perspectives on Emergency Medical Services in palliative situations.

To explore perspectives of South African patients and family members with palliative needs concerning Emergency Medical Services use in their care.

A qualitative design using individual semi-structured interviews was employed.

Patients and family members with palliative care needs who had previously experienced Emergency Medical Services care for these needs were included. Verbatim transcriptions of interviews were subjected to thematic analysis with an inductive-dominant approach.

Ten interviews were conducted. One overarching theme, The Dynamic of Control, and three categories were developed: (1) Loss of control: Heavy burdens of living with chronic and end-of-life illness, (2) Maintaining control: Longings and exigencies in times of suffering, (3) Transferring control: Consequential emergency medical services influence on palliative situations.

Understanding the Dynamics of Control in palliative situations is fundamental to the Emergency Medical Services’ establishment of a person-centred approach in palliative situations. Practical developments that would allow this approach include alternative care pathways, on-scene information availability, and palliative care education. Including palliative care in Emergency Medical Services education may have benefits beyond improved palliative situation management, as it encourages a cultural shift towards person-centred care.

Physicians are frequently asked what they would do in the position of their patients, and they have significant influence on end-of-life decisions. Therefore, it is crucial to understand the connection between physicians’ personal end-of-life preferences and their clinical practice and the impact of this connection on patient care.

To explore how physicians perceive and manage the impact of their end-of-life preferences on their clinical practice and end-of-life decision-making.

Exploratory qualitative study using in-depth interviews.

Forty-five interviews were conducted from January to November 2022 using a semi-structured interview guide. Participants included three types of physicians: general practitioners, palliative care physicians, and other medical specialists in Belgium (Flanders), Italy, and the United States (Wisconsin). Data collection and analysis were informed by the reflexive thematic analysis approach. Audio recordings were transcribed verbatim, and NVivo 12 was used for coding and analysis. Consolidated criteria for reporting qualitative research (COREQ) was followed.

Physicians acknowledge the impact of their personal end-of-life preferences on their clinical practice and emphasize the importance of maintaining objectivity and centering decision-making on patient preferences. Physicians adopt strategies to mitigate potential biases. There is a divergence of opinion about whether it is appropriate to share when asked what they would do in the position of their patients. Most believe focusing on patients’ values and priorities is essential and others feel sharing is crucial to maintain trust. Physicians struggle with ethical tensions and moral discomfort, particularly when patients’ requests conflict with their beliefs. Physicians experience personal and professional growth through end-of-life discussions and reflection.

Physicians recognize and attempt to manage the impact of their own end-of-life preferences on their clinical practice. Physicians are not in agreement about sharing when asked what they would do in the situation of their patients.

Emergency medical services (EMS) encounters with palliative care patients present unique operational challenges. As EMS providers increasingly care for individuals with life-limiting illnesses, understanding the intersection of emergency care and palliative medicine has become essential to optimizing healthcare delivery.

This study examines EMS operational metrics, resource allocation patterns, and clinical outcomes among palliative care patients in Thailand.

This retrospective analysis study investigated operational times, resource utilization, and clinical outcomes in palliative care patients utilizing EMS services, derived from electronic medical records and EMS documentation. This study was conducted at the Srinagarind Hospital EMS unit from October 2019 to September 2024. All patients diagnosed with palliative care (ICD-10 code Z51.5) who utilized EMS services were included.

Palliative care patients represented 6.9% (N = 340) of total EMS utilization (N = 4520), with cases increasing from 51 patients (15.0%) in 2019–2020 to 89 patients (26.2%) in 2023–2024. The median age was 72 years, with 62.9% male patients. Palliative care patients demonstrated significantly prolonged EMS operational times: activation (1.51 min vs 1.27 min), response (10.21 min vs 9.35 min), and scene time (22.05 min vs 10.02 min, p < 0.001). Resource utilization showed higher rates of pain medication administration (30.88% vs 7.79%) and exclusive use of comfort-focused interventions. Patient outcomes revealed significantly higher discharge rates.

Palliative care patients utilizing EMS services represent a distinct population requiring specialized operational approaches. Extended scene times reflect appropriate symptom-focused care delivery rather than rapid transport protocols. Higher discharge rates validate the EMS role as a symptom management bridge.

A growing proportion of older adults are living longer and dying with life-limiting illnesses. While the majority express a preference for end-of-life care at home, there is often a disparity between this preference and settings in which care and death continue to occur. Alongside other determinants, the nature of available care at home at the end of life shapes the realisation of preferences. Yet there is limited understanding of the experience and effectiveness of programs of in-home aged care in supporting end-of-life care at home.

The study aimed to explore the experiences of informal carers of older adults with a life-limiting illness in the last year of life who received forms of in-home aged care.

A qualitative design utilised semi-structured interviews to elicit experiences of current or former (bereaved) carers of an older adult (n = 14), who currently or previously received support through programs of Australian government-funded in-home aged care. Analysis of interview data employed reflexive thematic analysis.

Findings highlight features of in-home care that shape and constrain effective and equitable end-of-life care provision over the arc of experience, from the point of accessing this care. Themes pertained to the centrality of navigational support, the need for responsivity and flexibility to meet needs and preferences, the function of specific knowledge and skills and the importance of a relational orientation in facilitating continuity. Carer positionality, associated with individual capacity and resources, influenced the potential to mitigate gaps in care.

Approaches that support system navigation and the tailoring of features of in-home aged care to meet complex end-of-life needs are indicated, alongside further attention to education and support of the in-home aged care workforce. Implications are timely and possess relevance across sectors of aged and health care seeking to enable end-of-life care for older adults at home.

Advance care planning (ACP) has become central to end-of-life policy in Japan, aiming to uphold autonomy and dignity. However, conceptual confusion about its ethical and legal foundations risks promoting a procedural rather than ethically grounded approach to ACP.

This study aimed to (1) assess healthcare professionals’ knowledge of ethical and legal concepts in medical decision-making, (2) examine how patient autonomy is respected through clinical vignettes, and (3) identify factors associated with respect for autonomy.

Cross-sectional questionnaire survey.

Healthcare professionals (n = 549) in a Tokyo geriatric hospital completed measures of attitudes toward and experiences with end-of-life care, knowledge of legislation and ethical concepts underlying medical decision-making, and response to two clinical vignettes depicting decision-making dilemmas. Analyses included descriptive statistics, comparisons across occupational groups, and multivariate regression to identify factors associated with respect for patient autonomy.

Misconceptions were common: 38% of participants equated ACP exclusively with decisions to forgo active treatment, and many conflated ACP with current rather than future-oriented care planning. The vignette study further demonstrated that a dementia diagnosis alone reduced respect for patient preferences in 27.8% of cases. Ethical dilemmas frequently arose when ACP was applied in practice, especially regarding withholding or withdrawing treatment, suggesting that ACP does not necessarily resolve such dilemmas and may generate new ones in some cases. Two independent factors related to greater respect for patient autonomy were identified: greater knowledge of ethical concepts and personal experience witnessing harm from insufficient medical intervention.

ACP policies in Japan have advanced more rapidly than healthcare professionals’ ethical and legal understanding, risking procedural rather than ethically grounded practice. Systematic, cross-professional education integrating legal literacy, ethical reasoning, and reflective learning is essential to ensure that ACP genuinely safeguards patients’ rights and supports ethically sound decision-making.

With projections indicating an increase in childhood cancer diagnoses by 2050, family members in Kenya frequently assume extensive caregiving responsibilities. These duties are demanding and may adversely impact caregivers’ quality of life. In Kenya, caregivers manage both clinical and non-clinical tasks; however, there is a paucity of evidence regarding the extent of caregiver burden and its effect on their well-being. As cancer incidence rises, this data gap impedes the development of effective interventions to support caregivers and improve cancer care outcomes across the country.

This study aimed to assess the burden and quality of life of caregivers at a national referral hospital in Kenya.

This study employed a cross-sectional descriptive design involving 124 conveniently sampled participants. The Caregivers’ Quality of Life Index-Cancer and Zarit Caregiver Burden Interview tools were used to collect data on the caregivers’ quality of life and burden. Descriptive analysis was performed to generate frequencies, Pearson’s chi-square was used to assess the association between variables, and multiple linear regression was used to assess the association between variables.

Of the 124 participants, 91.9% were mothers aged 20–40 with secondary education, while most of the children (57.3%) were male, half were aged 1–5 years, and 47.6% had blood cancers. The average quality of life and burden scores were 83.38 (SD: 21.04) and 41.43 (SD: 17.52). Employment significantly reduces caregivers’ burden (B = −10.96, p = 0.001) and quality of life (B = −13.04, p = 0.001) while combined treatment significantly increases caregivers’ burden (B = 8.06, p = 0.049).

The burden of care on caregivers of children with cancer is significant and has a negative impact on their quality of life. To help reduce this burden and enhance caregivers well-being, we recommended interventions such as flexible work arrangements, paid family leave, psychoeducation, and accessible respite care.

Family carers play an essential role in caring for terminally ill relatives, but evidence regarding the experiences of young/young adult carers is limited.

To explore the experiences and support needs of young/young adult carers when caring at the end of life and into bereavement, and identify ways of improving support. In the ‘Discussion’, we apply the Dual Process Model of coping with bereavement (DPM) to help conceptualise our findings.

A mixed-methods study comprising; an online survey of statutory, voluntary and community sector professionals/volunteers working with current or bereaved young/young adult carers (n = 106); two focus groups with professional survey participants (n = 8); three focus groups with bereaved young/young adult carers (n = 9). Here, we describe our qualitative themes following reflexive thematic analysis of free-text survey and focus group data.

Our three main themes centre around; providing care at the end of life; navigating bereavement; and managing daily life and relationships. When caring, young/young adult carers struggle with a lack of emotional and practical preparedness for death, caregiver burden and changing roles and relationships within the family. Post-bereavement, they experience complex emotions relating to the death and the loss of their caring role/identity, alongside difficulties dealing with administrative/practical tasks and changes to living situations and family roles. Pre/post-bereavement young carers experience difficulties opening up and seeking help and lack of understanding or support from family, peers and schools/colleges, whilst also struggling with school attendance and performance. Transitioning between education and work/unemployment creates support gaps and needs unique to young adult carers, alongside a general lack of preparation for adult life.

Young/young adult carers experience multiple challenges and support needs, which can be usefully theorised using an adapted version of the DPM. Cross-sector changes, reflecting public health approaches, are needed to improve the informal and formal support available to young people when caring and bereaved.

Death literacy refers to the knowledge, skills, confidence, and social capacity that enable individuals and communities to understand and respond to dying, death, and loss, including palliative and end-of-life care. In low- and middle-income countries such as Ghana, access to palliative care remains limited due to under-resourced health systems, poverty, and socio-cultural norms that discourage open discussions about death. Despite growing global interest in death literacy and public health palliative care, there is limited evidence on how these are developed through culturally embedded, community-led approaches in non-Western contexts.

To explore how the COMPASS-Ghana participatory intervention shaped community stakeholders’ understanding of death, dying, and palliative care, and how stakeholder engagement contributed to culturally relevant and sustainable service development.

Qualitative participatory study informed by a Theory of Change framework.

Data were generated through three interlinked participatory intervention activities: a stakeholder engagement session involving 37 participants from healthcare, policy, faith-based, philanthropic, and community leadership backgrounds; a Theory of Change workshop with 25 participants; and focus group with 12 nursing and midwifery students. Data from facilitated discussions and participatory mapping were analysed using reflexive thematic analysis.

Three interrelated themes were generated: (1) building shared language and awareness around death, (2) embedding palliative care within existing community structures, and (3) enhancing collective agency for sustainable care. The intervention supported a shift from viewing death as taboo to recognising it as a shared community concern, increased confidence in discussing end-of-life issues, and highlighted locally grounded strategies to address financial, caregiving, and service access barriers.

Death literacy in Ghana emerges as a relational and collective process shaped through dialogue, trusted networks, and community action. Embedding palliative care within community and primary care structures aligns with public health approaches and supports Universal Health Coverage, responding to the World Health Assembly Resolution (WHA67.19).

People living with motor neurone disease (MND) increasingly receive complex, life-sustaining interventions at home, including ventilation, tube feeding, and cough assist support. These demands place substantial strain on family carers and often require input from paid homecare workers. Despite their essential role, little is known about how homecare workers contribute to complex MND care, how they integrate within multidisciplinary teams, or how families experience their involvement.

To examine people living with MND and family members’ perspectives of homecare worker roles, responsibilities, relationships when complex interventions are required.

A qualitative secondary analysis of data from two prior studies exploring home ventilation and tracheostomy ventilation in MND.

Seven relevant NVivo nodes and 33 sub-nodes from interviews with 68 participants were re-coded using a deductive framework. Fourteen new nodes and 11 sub-nodes were generated and organised into three themes: care commissioning and provision; relationships; and the home environment.

Participants described fragmented and inconsistent care commissioning, requiring families to advocate persistently for adequate support. Challenges included funding barriers, high staff turnover, and limited MND-specific knowledge, which undermined trust and compromised safe, effective care. Relationships with homecare workers ranged from highly valued, stable partnerships to strained interactions shaped by competence concerns, emotional labour, and mismatched expectations. The presence of homecare workers and medical equipment transformed the home into a quasi-clinical space, reducing privacy, disrupting routines, and requiring households to adapt around care provision. Yet strong relationships with homecare workers could enhance quality of life.

Homecare workers play a critical role in delivering complex home-based MND care, yet quality is inconsistent. Improving training, stabilising staffing, supporting care coordination, and preparing families for the relational and environmental impact of homecare are essential for fostering sustainable, trusted care relationships, and improving outcomes for people living with MND and their families.

Most children with cancer want clear and honest information about their illness, and effective communication can support coping and reduce distress for children and families. However, in Japan, healthcare professionals face numerous communication barriers when discussing cancer diagnoses with children, and the culturally grounded beliefs and approaches shaping these conversations remain poorly understood.

This study was aimed at clarifying the beliefs and approaches of Japanese healthcare professionals in communicating cancer diagnoses to children and their families.

An exploratory qualitative design was adopted, involving semi-structured individual interviews.

Participants included 18 healthcare professionals (9 physicians and 9 nurses) with over seven years of experience. Data were analyzed using thematic analysis.

Five approaches were identified under an overarching commitment to the child’s best interests: 1) honesty balanced with emotional protection, 2) empathetic negotiation with families, 3) information sharing to ensure understanding and hope, 4) being present in suffering, and 5) professional self-reflection and mutual team support. While these themes resonate with international literature on honest and supportive communication, two culturally salient features emerged in Japan: a strong tendency to prioritize families’ wishes in decision making and a relational emphasis on “being present” rather than relying solely on structured, protocol-driven conversations. Communication was hampered by a lack of standardized training and a shortage of pediatric oncology nurses due to staff rotation.

Pediatric cancer diagnosis communication in Japan is shaped by five approaches that prioritize the child’s best interests. Locally grounded strategies highlight the importance of trust, relationship building, and being present, but may limit children’s voices when family preferences dominate. It is essential to employ nurses who specialize in pediatric cancer care. Future research should incorporate the children’s and families’ perspectives and evaluate culturally sensitive communication strategies.

Advance care planning (ACP) is the process of identifying and communicating values and goals in preparation for future shared decision-making in medical settings. Decisions are legally supported by an advance directive (AD) document designating healthcare agent(s) and future medical treatment preferences. Although important, ACP engagement in the United States remains low. Previous US research focuses heavily on ACP among older adults and those with life-limiting illness. Few studies have sought to understand knowledge of and engagement with ACP among the general population in primary care settings and potential barriers to completion of ACP.

This study examined US adults’ knowledge and perceived importance of ACP and ADs, their preferences regarding who—if anyone—would they choose to assist with completion, and their expectations of the time and cost associated with ACP and ADs.

An anonymous online survey was developed following pilot focus groups that identified misconceptions regarding ACP and ADs and the role of physicians in end-of-life decision-making. Questions assessing expected time and out-of-pocket cost were in response to feedback from clinical social workers providing ACP services in primary care settings.

Participants were recruited through social media and emailed invitations to complete a short, online survey in Qualtrics. Two hundred and forty-eight adults residing in the United States completed the survey.

Participants demonstrated low to moderate knowledge of ACP and ADs, despite rating them as important. Most expressed a desire for professional assistance, but lacked clarity about which professional. They assumed that it was costly and time-consuming.

Findings indicate persistent gaps in ACP and AD literacy among US adults, along with misconceptions about access, time, and costs that may be contributing to low engagement. Increasing public education and expanding access to knowledgeable professionals may help reduce barriers and promote more equitable engagement in ACP.

We know little about how non-profit organizations create the conditions within their communities that support sustainable change – a process that has been referred to as scaling deep. In this paper we explore the implementation of a volunteer community-based navigation program, within 46 community-based organizations, to better understand how organizations seek to create the cultural and relational conditions to support sustainable change.

To examine the strategies organizations used to scale deeply during a volunteer navigation (Nav-CARE) program implementation.

Qualitative descriptive interview study.

A qualitative descriptive study using semi-structured interviews conducted with key informants (n=30) exploring approaches used to scale deeply during program implementation.

Informants described ways in which they raised the visibility of the program, used mindful messaging, deepened relationships, and expanded the possibilities of their organizational mandate. Community-specific dissemination strategies and a heavy emphasis on face-to-face interpersonal interactions were integral to raising program visibility. Messaging was sensitive to cultural and historical tensions, avoided negative or needs-based language, emphasized strength-based volunteer recruitment and drew upon ideas of collaboration rather than competition. Developing trust at all levels, both within and beyond the organization, was foundational to deepening relationships. Providing practical assistance, becoming a connecting point to other community partners, and demonstrating how they were driving policy change were important to expanding the possibilities of their organizational mandate.

Scaling deep for these organizations went beyond changing values and beliefs specific to the innovation. Rather, these organizations focused at a more fundamental level on: developing relationships of trust within and beyond their organization, emphasizing that community members needed one another, and demonstrating that their organization had a vital contribution to the overall well-being of the community. Such an approach had important implications for how organizations must “play the long-game” to effectively scale and embed social innovation.

In long-term care (LTC) homes, residents living with dementia frequently experience serious illness communication that is crisis-initiated and oriented to institutional documentation (e.g., transfer and resuscitation orders), rather than iterative, values-based discussions aligned with a palliative approach and substitute decision-making frameworks. Unpaid care partners often make high-stakes decisions with limited preparation, and residents are inconsistently included.

To explore how serious illness communication occurs with residents living with dementia, unpaid care partners, and healthcare providers in LTC, and to identify practice-relevant communication strategies and contextual factors applicable to clinical practice.

An integrative review following Toronto and Remington’s six-stage methodology included 31 high-relevance studies (qualitative, quantitative, mixed methods, reviews, theoretical) published from 2015 to 2025 on serious illness, goals-of-care, or end-of-life communication in LTC dementia care. Directed content analysis was guided by Tarbi et al.’s basic science of communication in serious illness (lexical, non-lexical, contextual elements, and outcomes).

Serious illness communication was predominantly biomedical and documentation-focused, often occurring at admission or during crises and directed mainly to unpaid care partners, with limited resident involvement. Lexical practices such as clear, jargon-free information, explicit invitations to discuss “what matters most,” and early conversations about hypothetical future scenarios enhanced trust, preparedness, and alignment of care with resident values. Non-lexical elements (tone, eye contact, pacing, use of silence) shaped perceived empathy but were seldom explicitly addressed by interventions.

For LTC healthcare providers, embedding earlier, iterative serious illness communication, explicitly involving residents where possible, and cultivating both lexical and non-lexical skills are key to achieving relationship-centred, legally compliant, and goal-concordant palliative approaches to care.​

Healthcare providers help families navigate end-of-life care decisions in the neonatal intensive care unit (NICU) and pediatric intensive care unit (PICU); however, limited studies exist regarding what values providers perceive families utilize when in these situations.

To evaluate providers’ perceptions of values that families considered when making end-of-life care decisions for their child.

Develop a novel survey tool to understand providers’ perceptions of values families considered when making end-of-life care decisions for their children and distribute the survey tool to providers in a single quaternary care children’s hospital within a university hospital.

The novel survey tool was composed of survey questions based on existing literature, revised based on expert feedback, then iteratively refined through cognitive interviews. Preliminary data from this survey tool was collected from eligible participants at one study site.

Feedback from nine experts and six cognitive interviews resulted in a 21-item survey. Ninety-five participants completed the survey. Participants reported that the relationship between the family and child, the child’s quality of life, and the child’s prognosis or disease course were most important to the family. Conversely, finances and prior experiences were ranked least important.

A novel survey tool was created to identify the core values that families were perceived to favor by healthcare providers when making end-of-life care decisions for their children, as a means to improve end-of-life care discussions at the bedside. Pilot data suggests that providers may understand the values that families utilize, though may not understand how they prioritize them. Future studies comparing family and provider responses, with mirrored surveys, are necessary to create decision support tools and to improve provider education in end-of-life care decision-making.

Nursing and medical schools and universities are increasingly integrating palliative and end-of-life care education in their curricula. However, research on the impacts of training and education on future nurses and physicians remains sparse.

The aim of this review was to systematically appraise existing research evidence on undergraduate nursing and medical students’ knowledge, perception, and orientation towards palliative and end-of-life care.

This international systematic review was conducted between April and May 2021 and was updated in May 2024. A systematic search was conducted in four databases: Hinari ‘Research4Life’, Cumulated Index to Nursing and Allied Health Literature (CINAHL), Google scholar and PubMed. Methodological quality of the included studies was assessed using the Mixed-Methods Appraisal Tool. A data extraction sheet was developed for this review. A convergent integrated approach to mixed-method data synthesis and integration was used to analyse and report the evidence. Braun and Clarke’s inductive and deductive thematic analysis approach was used to identify main themes.

A total of 64 peer-reviewed research articles met eligibility criteria and were included in the review. Of the 64 eligible research articles, 34 employed a descriptive quantitative cross-sectional design, 11 studies were qualitative, 14 used a quantitative non-randomised design and 5 were mixed methods. The review identified three major thematic categories: (1) students’ knowledge of palliative and end-of-life care, (2) attitude, perception and orientation towards palliative and end-of-life care and (3) predictors of knowledge, orientation, attitude and perception towards palliative and end-of-life care.

Findings suggest inadequacy and variability in knowledge levels, self-efficacy, willingness, perception and orientation towards palliative care and end-of-life care. Surprisingly, this is common across studies, including those from high-resource countries. Inadequate, limited and/or inconsistent curricula and training content about palliative and end-of-life care is a common theme in the literature.

Knowledge confined within academic or clinical silos has limited utility to influence policy. To bridge the gap between evidence and action, a participatory, co-creation workshop was convened of persons living with dementia, family carers, healthcare professionals, policy actors, spiritual or faith-based leaders, and community advocates in a collective process of dialogue, reflection, and solution design.

The research aimed to determine whether stakeholders’ knowledge and attitudes towards dementia improved following the workshop.

Data were drawn from a multi-method assessment from a participatory research dissemination and co-creation workshop held in Kumasi, Ghana. A non-parametric Wilcoxon signed-rank test was selected as the primary analytical tool for the pre–post-test. A reflexive thematic analysis was implemented for the qualitative data.

Following the workshop, participants reported feeling significantly more informed about dementia prevalence in Ghana (Z = 2.510, p = 0.012), the challenges faced by family caregivers (Z = 3.030, p = 0.002), and common caregiver coping strategies (Z = 3.247, p = 0.001). Understanding of socioeconomic (Z = 2.525, p = 0.012) and gender-related (Z = 2.569, p = 0.010) influences on dementia risk, and caregiving also improved. Attitudinally, participants expressed stronger agreement that family caregivers deserve more support (Z = 2.828, p = 0.005), that dementia care should be a higher health system priority (Z = 2.445, p = 0.014), and that faith-based organisations have an important role (Z = 2.001, p = 0.045). Proposed solutions included policy advocacy and systems thinking, community- and home-based care, collaborative networks, caregiver support programmes, stigma reduction and cultural reorientation, and involvement of religious leaders.

There is a need to formalise and resource a community of practice, thus ensuring sustained collaboration, structured knowledge exchange, collective action across sectors, whilst piloting a caregiver support programme and home-care model with rigorous monitoring and evaluation. It is time for policymakers to enact a comprehensive dementia care policy to guide and regulate all stakeholders in the continuum of dementia care.

People living with dementia (PLWD) often have high symptom burden, exacerbated by comorbidities and experience unplanned hospital admissions that increase towards the end of life. Unmanaged symptoms and unplanned hospital admissions are distressing for the person living with dementia and family carers and expensive for the healthcare system.

To explore the relationship between unmanaged symptoms of PLWD following an unplanned hospital admission and carer health and wellbeing outcomes over time.

Prospective longitudinal cohort study.

Physical, psychosocial and spiritual symptoms of the PLWD and carer burden, distress and pre-death grief were assessed over 12 months following an unplanned hospital admission. Descriptive statistics and multilevel linear regression analyses were used to examine the relationships between PLWD unmanaged symptoms and carer outcomes.

A total of 51 carers of PLWD with a mean age of 59.6 participated. Carer burden was significantly associated with increasing PLWD unmanaged symptoms (coefficient = 0.07, 95% CI [0.03, 0.12], p = 0.002) and agitation (coefficient = 0.08, 95%CI [0.02, 0.14], p = 0.009). Carer psychological distress showed a positive trend in its association with increasing PLWD unmanaged symptoms (coefficient = 0.07, 95% CI [−0.00, 0.13], p = 0.059) and agitation (coefficient = 0.06, 95% CI [−0.01, 0.14], p = 0.090), but both analyses did not reach statistical significance. Carer pre-death grief was not associated with PLWD symptoms or agitation.

Identifying and addressing symptoms in PLWD following an unplanned hospital admission is essential in enhancing the wellbeing of PLWD and carers. Hospital discharge planning should incorporate carer perspectives, provide support for carer burden and distress, and ensure continuity of care to reduce symptoms and improve outcomes for both PLWD and their carers.