BACKGROUND:Volunteering is a recognised component of palliative and end-of-life care. The impact of volunteering on palliative care volunteers and their role in specific settings has been reviewed. The impact of volunteers is becoming increasingly relevant in light of the growing demand for palliative care internationally. AIM:Explore the roles and impact of volunteers in palliative care on the wellbeing, mental health, physical health, satisfaction with care, and service use of patients and unpaid carers. DESIGN:Mixed studies systematic review. Protocol registration PROSPERO: CRD42024560700. DATA SOURCES:The following databases were searched from 2013 to 2025: AMED, CINAHL, Embase, PsycINFO, HMIC, Web of Science, ProQuest Dissertations and Theses, International Biography of Social Sciences, Cochrane Library. Eligible studies included adults with a terminal illness, their family members or unpaid carers participating in volunteering interventions. Critical appraisal was conducted using Joanna Briggs Institute tools. RESULTS:Twenty-nine reports relating to 24 studies were included. Volunteering roles included peer support, befriending, information provision, arts-based interventions, and practical support. Volunteering interventions positively impacted patients' hedonic wellbeing, quality of life, and mental health. For eudaimonic wellbeing, quantitative data demonstrated mixed results, while qualitative studies suggested improved social connection. For unpaid carers, there was limited quantitative evidence of impact on wellbeing. Qualitative data indicated interventions were beneficial in supporting advocacy and were well received. CONCLUSIONS:Qualitative data indicated volunteering interventions were well received by patients and unpaid carers. Quantitative studies were limited by small sample sizes but demonstrated positive trends. Little evidence that volunteering was associated with harm.
BACKGROUND:Childhood cancer deaths may be associated with persistent parental grief. Evidence on grief symptoms beyond ten years post-loss remains limited. AIMS:We described grief symptoms, identified grief profiles, and examined associations between grief intensity and sociodemographic, cancer-related characteristics, and time since death. DESIGN:This multicenter cross-sectional survey was conducted in Switzerland (July 2022-July 2023). We used PG-13. Items were rated on a 5-point scale (1-5). We calculated the sum score to assess grief intensity (range 11-55). We employed descriptive statistics, latent profile analysis, and linear regression analyses. SETTING/PARTICIPANTS:Eligible parents had a child diagnosed with cancer (⩽18 years), who had received treatment at one of three participating Swiss pediatric oncology centers and had died ⩾1 year prior to study participation. Participants were identified via the Swiss Childhood Cancer Registry and invited by the child's former treatment facility. RESULTS:Of 388 identified cases, 103 parents of 81 deceased children participated. Mean grief intensity was 23.3 (SD = 9.0); yearning represented the most prominent symptom (mean = 3.2), while reminder avoidance was least prominent (mean = 1.3). Latent profile analysis revealed three grief profiles: low (56%), moderate (32%), and high grief (12%). High poverty risk (β = 11.04, p<0.001) and death in healthcare facility (β = 3.82, p = 0.024) were associated with higher grief intensity, while longer time since death was associated with lower grief intensity (β = -5.46, p = 0.041). CONCLUSIONS:Parental grief symptoms can persist long after the death of a child to cancer. Integrated palliative care, anticipatory guidance, and multidisciplinary collaboration may identify at-risk parents early, and ensure sustained support within the community.
BACKGROUND:Global aging and rising severe illnesses prevalence have increased demand for palliative care, widening service gaps. Policy support is vital for advancing high-value services. AIM:To unveil the 35-year evolution of palliative care policy in mainland China. DESIGN:An in-depth analysis of the external and internal characteristics of palliative care policy documents. Developmental periods were delineated using core characteristics, key events, and annual releases. Network analysis mapped intersectoral collaboration in palliative care policy-making. Text mining techniques, including burst words and word frequency analysis, identified policy priorities and inclinations. Policy instruments were classified using Rothwell and Zegveld's framework to analyze the policy landscape and its evolution. SETTING/PARTICIPANTS:Palliative care policies, the research subject of this study, were retrieved from Chinese legal databases and government websites. RESULTS:Policy evolution spanned five periods: germination (1991-2002), exploration (2003-2010), expansion (2011-2015), rapid development (2016-2019), and stable development (2020-2023). Intersectoral collaboration among policymakers evolved from single-department regulation to multi-sectoral governance, with the National Health Commission serving as the pivotal entity. Policy priorities and inclinations reflected the unification of policy terminology, the establishment of an institution-community-home continuum, and the active incorporation of local elements. Policy instruments transitioned from imbalance to greater balance over time, although several sub-instruments remained underutilized. CONCLUSIONS:Mainland China has established a comprehensive palliative care policy framework with distinctive features, with development particularly accelerating after 2016. Nonetheless, gaps persist in dedicated legislation or planning, financially sustainable funding strategies, integration into health professional education, and supportive digital infrastructure. Future efforts should prioritize the transition from framework-building to ensuring equitable access.
BACKGROUND:Palliative care has been advocated to improve symptom burden and quality of life among people with progressive neurological diseases. However, validated palliative care outcome measures for neurological conditions remain limited in non-Western settings. AIM:To translate, adapt and psychometrically evaluate the Integrated Palliative care Outcome Scale for Neurological conditions (IPOS-Neuro) among people with progressive neurological diseases in Hong Kong. DESIGN:The traditional Chinese version of IPOS-Neuro was developed through forward-backward translations, cognitive debriefing interviews, and expert review. Psychometric properties were evaluated by examining factor structure, convergent validity, concurrent validity, internal consistency, and test-retest reliability. Comparator instruments included Palliative Care Outcome Scale, Hospital Anxiety and Depression Scale, and EQ-5D-5L. SETTING/PARTICIPANTS:Two hundred and ten adults with progressive neurological diseases recruited from regional neurology outpatient clinics and patient support groups in Hong Kong. RESULTS:Confirmatory factor analysis supported the three-factor structure (Physical Symptoms, Emotional Symptoms, and Communication/Practical Issues) with acceptable fit indices. IPOS-Neuro showed good internal consistency (Cronbach's alpha = 0.93), strong concurrent validity with Palliative Care Outcome Scale (r = 0.74), moderate convergent validity with EQ-5D-5L index (r = -0.51) and Hospital Anxiety and Depression Scale (r = 0.56), and excellent test-retest reliability (intraclass correlation coefficient = 0.99). Additional exploratory factor analysis identified a new clinically-meaningful nine-factor model: psychosocial problems and symptom dimensions related to fatigue, motor, gastrointestinal, oral and sensory, cognitive, sexual, bowel, and non-motor issues. CONCLUSION:The traditional Chinese version of IPOS-Neuro showed promising psychometric properties for assessing palliative care needs in progressive neurological diseases. Future validation in larger and diverse neurological disease samples is warranted.
BACKGROUND:Place of death is a key population-level indicator for palliative care and health services planning. However, substantial international variation in how it is recorded limits cross-country comparisons and health system evaluations. AIM:Analyse the technical qualities of national place of death classifications and data, and identify strengths and weaknesses from the perspective of researchers using death certificate data. DESIGN:Cross-sectional online survey. The questionnaire design was informed by the United Nations (UN) and World Health Organization (WHO) recommendations for international statistical and health classifications, and included closed- and open-ended questions. SETTING/PARTICIPANTS:Sixteen researchers identified through published place of death studies participated. Collectively, they had analysed data from 67 countries until 2022, most for over 10 years. RESULTS:Most researchers reported that national classifications were stable, had mutually exclusive categories, and included a category for "home". However, shortcomings were identified: lack of detailed categories for relevant settings (e.g. hospice, nursing home), ambiguous or inconsistent terminology, and limited use of hierarchical or multi-axial structures. Participants emphasised the need for greater standardisation of categories, clearer definitions, and improved data quality through training on completing death certificates. CONCLUSIONS:This is the first study to assess place of death classifications and data from researchers' perspectives. Findings highlight critical limitations in current classification systems and provide guidance for developing an international classification aligned with UN and WHO recommendations. This will enable more meaningful cross-country comparisons and strengthen evidence to inform palliative care and health services planning worldwide.
BACKGROUND:Little is known about non-curative lung cancer care, including palliative care, for adults with intellectual, or developmental disabilities. Clinical management may vary due to health status, ability to communicate, access to inclusive healthcare, and healthcare bias. AIM:We examined the receipt of cancer-directed consultations, treatments and palliative care among stage IV non-small-cell lung cancer (NSCLC) patients with and without intellectual or developmental disabilities. DESIGN:This was a population-based retrospective cohort study using provincial routinely collected health data. Receipt of consultations with surgeons, medical oncologists, and radiation oncologists, receipt of systemic therapy, radiation, and surgery as well as receipt of palliative care in the year following diagnosis were compared between people with and without intellectual or developmental disabilities. Cause-specific Cox proportional hazards regression, accounting for death as a competing event, was used. SETTING/PARTICIPANTS:Adults diagnosed with stage IV NSCLC between 2010 and 2022 in Ontario, Canada. RESULTS:The study included 33,184 individuals diagnosed with stage IV NSCLC (n intellectual or developmental disabilities = 106). Adults with intellectual or developmental disabilities were significantly less likely to receive any cancer-directed consultation (hazard ratio [HR] = 0.62; 95% confidence interval [CI] 0.49-0.78), any cancer-directed cancer treatment (HR = 0.52; 95% CI 0.39-0.70), and radiation or systemic therapy (HR = 0.49; 95% CI 0.36-0.66) than non-disabled adults. There was no statistical difference in receipt of palliative care (HR = 1.15; 95% CI 0.93-1.41). CONCLUSION:These findings contribute to an emerging evidence base documenting differences in cancer treatment and outcomes among adults with intellectual or developmental disabilities. Person-center research is needed that examines end-of-life lung cancer care treatment decision-making to identify and mitigate barriers to optimal management.
Background: The increasing digitalization of everyday life means that digital artifacts persist after death, presenting unique and complex challenges in palliative care. Lacking clear conceptualization, digital legacy raises clinical, ethical, and legal uncertainties. Conceptual clarity is crucial to support palliative care teams in addressing digital legacy issues at the end of life. Aim: To examine and clarify the concept of digital legacy in palliative care. Design: A concept analysis was conducted using Walker and Avant’s eight-step method. Data Sources: Seven electronic databases (CINAHL, Embase, Medline, PsycInfo, Scopus, Web of Science, CareLit) were searched in May 2025, with no time restrictions and relevant English- and German-language publications were reviewed. Given the conceptual focus, no formal study quality appraisal was conducted. Results: From 373 records, 46 articles were included. Digital legacy comprises the totality of digitally encoded artifacts that endure after an individual’s death, manifesting as multidimensional, dynamically reconfigurable formations shaped by varying degrees of purposefulness, curation, meaning, media dependency, and access. Consequences include a broad range of emotional responses, ongoing support needs, transgenerational transmission, and potential risks of misuse. Conclusions: The concept of digital legacy in palliative care offers insights into its attributes, antecedents, and consequences. It clearly demonstrates that digital legacy is a complex, multidimensional phenomenon that extends far beyond technical data storage as an integral component of palliative care. Further research is needed to investigate the dynamics of digital legacy in palliative care.
Background: Implementing tools to identify and support palliative care needs remains challenging in hospitals, requiring a clear understanding of implementation determinants. This study defines tools as clinical resources for palliative care identification, needs assessment, and advance care planning support. Aim: This scoping review aimed to identify and categorise the barriers and facilitators influencing the implementation of tools in hospital settings. Design: Following the Arksey and O’Malley framework with PRISMA-ScR reporting, we employed a hybrid analysis combining inductive thematic coding with deductive mapping onto the Consolidated Framework for Implementation Research. Studies in English, Danish, Norwegian, or Swedish were considered eligible for inclusion. Data sources: In May 2024, the databases MEDLINE, Embase, Scopus, CINAHL, SocINDEX, and PsycINFO were searched for studies focusing on tool implementation by healthcare professionals in hospital settings. Results: From 4032 records screened, 25 studies were included. Determinants were identified across all five Consolidated Framework for Implementation Research domains, though primarily concentrated within the Inner Setting and Individuals. Key barriers included time constraints, lack of training, and fragmented communication. Facilitators comprised strong leadership support, clinical champions, multidisciplinary collaboration, and a supportive organisational culture. Conclusion: This scoping review identifies determinants that can inform the selection of implementation strategies for tools in hospitals. Our findings suggest that tool implementation likely requires multi-faceted strategies capable of addressing barriers across multiple levels, from individual training to organisational leadership and culture. Future research should focus on evaluating tailored strategies that account for the unique complexities of different hospital contexts to ensure sustainable adoption.
BACKGROUND:Integrated palliative care may improve outcomes in patients with cancer, but few studies have specifically evaluated its benefits in head and neck cancer. AIM:To assess changes in symptom control, quality of life, and supportive care needs in patients with head and neck cancer consecutively treated at a palliative care outpatient clinic over 12 months. DESIGN:Prospective cohort study. Symptoms were assessed at baseline and at 1.5, 3, 6, 9, and 12 months, and quality of life at baseline, 2, and 4 months. Symptom management was adjusted and referrals made as needed. SETTING AND PARTICIPANTS:Palliative care outpatient clinic integrated into the head and neck cancer unit of a comprehensive cancer center. Patients with head and neck cancer referred to this clinic who attended their first consultation were eligible. RESULTS:118 patients (69.5% males; mean [SD] age 62.9 [10.5] years) were included. Most (91%) had active disease (85% receiving anti-cancer treatment). From baseline to month 12, improvements were observed in: average pain intensity (mean [95% CI]), 2.53 [2.09; 2.96] to 1.5 [0.86; 2.14]; total symptom distress score, 27.96 [25.35; 30.57] to 20.34 [16.63; 24.05]; anxiety, 1.86 [1.48; 2.24] to 1.14 [0.57; 1.7]; depression, 3.46 [3; 3.93] to 2.79 [2.13; 3.45]. Quality of life improved from baseline to month 4. Referral rates to supportive care were: social work (50%), psycho-oncology (21%), psychiatry (12%). CONCLUSIONS:Patients managed at a dedicated palliative care outpatient clinic showed improvements in symptom control and quality of life over time, which may reflect the contribution of integrated palliative care in the ambulatory setting.
BACKGROUND:Older adults with advanced heart failure experience significant morbidity and mortality and face higher complication rates from advanced therapies. Ensuring these therapies match patients' values is essential for patient-centered care, and palliative care can be instrumental in clarifying patients' goals. AIM:To examine the relationship between advanced heart failure patients' expressed goals of care and their subsequent clinical outcomes and circumstances of death. DESIGN:In this retrospective cohort study, electronic medical records were reviewed for demographic information, advanced therapy evaluation outcomes, and quality-of-death metrics. Goals of care were identified from palliative consult notes and compared with outcomes to assess goal-concordance. SETTING/PARTICIPANTS:This single-center study included adults who were referred to both advanced heart failure and palliative care specialists from 2012 to 2022. RESULTS:Of 212 patients, 91 (42.9%) underwent evaluation for advanced therapies, though few received a heart transplant (16, 7.5%) or left ventricular assist device (32, 15.1%). Most (148, 69.8%) had only one palliative physician visit. One hundred thirty-nine (65.6%) died, often in the hospital (55, 40%) and with life-sustaining therapy in the last 24 h (73, 52.5%). Most (167, 78.8%) received goal-concordant care, with the main reasons for discordance being the desire for advanced therapy (33, 15.6%) and complications post-implantation affecting quality of life (9, 4.2%). CONCLUSIONS:Few older adults received advanced therapies, and palliative care was underutilized, with many patients seeing palliative care only once. Most received goal-concordant care, but decisions were often made late, highlighting the need for earlier, longitudinal palliative care for these vulnerable patients.
