BMC Palliative Care[JOURNAL]
Sun
200 papers
What models of community palliative rehabilitation exist for adults in the United Kingdom? - a national cross-sectional survey.
Manson J, Taylor P, Mawson S … +1 more , O'Cathain A
BMC Palliat Care · 2026 Mar · PMID 41826927 · Full text
BACKGROUND: Palliative care for advanced illness is expected to increase globally by 87% by 2060. Palliative rehabilitation helps patients manage symptoms and maintain independence. It is increasingly delivered in commun...
BACKGROUND: Palliative care for advanced illness is expected to increase globally by 87% by 2060. Palliative rehabilitation helps patients manage symptoms and maintain independence. It is increasingly delivered in community settings where practitioners visit patients at home, or in outpatient clinics. However, there is limited current evidence on how community palliative rehabilitation is delivered in the UK. AIM: To describe current models of community palliative rehabilitation provision. METHODS: A cross-sectional online survey aimed at senior clinicians or managers of adult hospices that outreach into the community and generalist community palliative rehabilitation services in the United Kingdom in 2024. RESULTS: Of the 381 NHS community rehabilitation and specialist palliative care organisations surveyed, 96 (25%) responded, with most being independently funded hospices or nationally funded hospital trusts (NHS Trusts). Partial responses were included. All organisations employed physiotherapists and most (96%, 74/77) employed occupational therapists in their community palliative rehabilitation teams but over half did not employ any other AHPs (60%, 46/77). Independent hospices were more likely to employ specialist palliative care physiotherapists (71% vs. 21%) and occupational therapists (54% vs. 30%) than NHS community organisations and treat patients with cancer and COPD (100% vs. 68% respectively for cancer, 100% vs. 59% respectively for COPD). Most clinicians (89%), irrespective of organisation type, asked for further education or guidance to treat patients with palliative diagnoses. Many organisations could not always provide information in languages other than English (86% 57/66) or interpretation services at appointments (51%, 34/66). Integration of community rehabilitation services was better with specialist palliative care services (50%, 30/60) and primary care (42%, 26/60), but weaker with secondary care (21%, 13/60) and third sector organizations (11%, 7/60). CONCLUSIONS: There is variation in community palliative rehabilitation models across the United Kingdom in terms of staffing composition, casemix, equity of access for patients, and integration with other services. Further education or guidance is needed for clinicians in rehabilitation teams supporting patients with palliative diagnoses.
Challenges and suffering of people with advanced illness in rural Nepal: a mixed method multiple case study in four municipalities.
Poudel A, Munday D, Bhandari S … +9 more , Pantha A, Thapa A, Timilsina P, Shrestha N, Bates MJ, Khan F, Fernandes G, Grant L, Fearon D
BMC Palliat Care · 2026 Mar · PMID 41826911 · Full text
BACKGROUND: Nepal is experiencing increasing need for palliative care through the rising prevalence of non-communicable disease and an aging population. Most people live in rural areas where access to healthcare is limit...
BACKGROUND: Nepal is experiencing increasing need for palliative care through the rising prevalence of non-communicable disease and an aging population. Most people live in rural areas where access to healthcare is limited. This study explores experiences of suffering and health seeking behaviour amongst people with palliative care needs (PWPCN) and their unpaid family caregivers in rural Nepal. METHODS: A constructivist multiple case study design was employed across four rural municipalities (cases) in two districts. Cases included communities of varied ethnicity and human development indices served by a community hospital and village health posts. A house-to-house survey using the Supportive and Palliative Care Indicators Tool for Low Income Settings (SPICT-LIS) identified PWPCN. Following completion of a structured questionnaire, a purposive sample of PWPCN was constructed (unit of analysis). They, their carers and key informants completed semi structured interviews. Quantitative data were analysed using descriptive statistics and qualitative data were analysed thematically both within and across case. RESULTS: Among 587 households surveyed, 58 PWPCN were identified. 20 units of analysis were formed with interviews from 17 PWPCN and 17 caregivers and 16 key informants. None of the PWPCN had access to palliative care services. Three themes emerged: (1) Everyone suffers: reflecting high levels of physical, emotional, spiritual and social pain. (2) Paying for healthcare: high out-of-pocket expenditure, debt, and financial vulnerability mitigated partially for some by health insurance. (3) Decision-making - no right answer: exposed difficulties choosing between limited local services and distant, costly tertiary care. Decisions were affected by distance to and location of health facility (particularly those offering health insurance), transportation, cost/family resources, and a strong belief that “better care is found in the city.” Bypassing nearby facilities for distant tertiary hospitals was common. High level of suffering and unmet need led to a feeling of lack of control. Older people particularly did not access health care because of cost and were resigned to their fate. CONCLUSION: PWPCN in rural Nepal endure substantial suffering through unmet holistic needs and limited access to appropriate care. Financial hardship, geographical barriers, and perceived low-quality local services drive people toward distant facilities thus increasing costs.
Ethical perspectives in palliative care for chronic patients: a systematic review of nurses' experiences in home and hospital settings.
Khalilzadeh-Farsangi Z, Zamanifard M, Ghasemi F … +1 more , Fallah-Karimi S
BMC Palliat Care · 2026 Mar · PMID 41820989 · Full text
BACKGROUND & AIM: The global rise of chronic diseases requiring long-term management highlights the need for effective palliative care. Nurses play a central role in providing this care, yet frequently face ethical chall...
BACKGROUND & AIM: The global rise of chronic diseases requiring long-term management highlights the need for effective palliative care. Nurses play a central role in providing this care, yet frequently face ethical challenges such as moral distress, complex decision-making, and occupational stress. This systematic review aimed to identify, categorize, and synthesize evidence on nurses’ ethical perspectives, challenges, and professional interventions in palliative care for patients with chronic diseases in both hospital and home settings. The review addressed the following questions: (1) What are nurses’ ethical perspectives in delivering palliative care ? (2) What ethical challenges and decision-making dilemmas do they encounter? (3) Which strategies and interventions support ethically sound care? METHODS: Following PRISMA 2020 guidelines, five databases (PubMed, Scopus, Web of Science, SID, and Magiran) and gray literature via Google Scholar were systematically searched for studies published between 2015 and 2025 in English or Persian. Eligible studies included qualitative, quantitative, mixed-methods, and peer-reviewed reviews addressing nurses’ ethical challenges in palliative care. Qualitative data were analyzed using inductive content analysis, quantitative findings were synthesized descriptively, and mixed-methods results were integrated to allow convergence across study designs. Extracted codes were organized into themes, grouped into categories, and synthesized into overarching domains. RESULTS: Thirty-four studies met inclusion criteria. Four main domains of ethical challenges emerged: (1) Clinical decision-making and patient autonomy—dilemmas regarding life-sustaining treatments, medication and fluid management, palliative sedation, and conflicts between patient preferences and family/cultural expectations; (2) Justice and resource allocation—insufficient ethics education, high workload, limited organizational support, poor interprofessional collaboration, and scarce resources; (3) Beneficence and patient-centered care—ethical issues related to technological innovations, informed consent, data privacy, and environmental pressures such as ICU or emergency care conditions; (4) Non-maleficence and moral distress prevention—moral distress, burnout, reduced ethical courage, and legal concerns affecting clinical decisions. CONCLUSION: Nurses encounter substantial ethical challenges in delivering palliative care for patients with chronic diseases. Addressing these challenges requires ethics education, structured organizational guidance, interprofessional collaboration, and context-sensitive strategies to safeguard patient dignity and reduce moral distress. These findings provide evidence for policymakers, educators, and managers to develop practical interventions and ethical frameworks across diverse care settings.
Factors associated with participation in advance care planning among people with different degrees of cognitive impairment: a systematic review.
Wu X, Zhao W, Yao X … +5 more , Wu J, Huang Y, Han Y, Zhuang H, Zhao Y
BMC Palliat Care · 2026 Mar · PMID 41820917 · Full text
BACKGROUND: Cognitive function and decision-making ability are crucial for participation in advance care planning (ACP). People with different degrees of cognitive impairment face considerable difficulty and exhibit sign...
BACKGROUND: Cognitive function and decision-making ability are crucial for participation in advance care planning (ACP). People with different degrees of cognitive impairment face considerable difficulty and exhibit significant heterogeneity in their participation in ACP. METHODS: Six English electronic databases (Embase, PubMed, Cochrane Library, PsycINFO, CINAHL, and Web of Science) and four Chinese databases (CNKI, CBM, Wanfang, and VIP) were searched from inception to February 18, 2024. The QualSyst tool was used to evaluate the study quality. Thematic synthesis was used to analyze the data. RESULTS: Thirty-seven papers were included, comprising 21 qualitative, 9 quantitative, and 7 mixed studies. Factors related to ACP antecedents (sociodemographic characteristics, ACP perception, prior ACP experience, disease-related factors, and socio-cultural context) and ACP attributes (ACP procedural elements and ACP supportive mechanisms) influenced the participation of people with different degrees of cognitive impairment in ACP, but some differences were also found. Difficulty in accepting the disease and decision conflicts were not found to have an effect on mild cognitive impairment. Care network relationship was not found to influence mild to moderate dementia. Relying on surrogate decisions, decision conflicts, ACP data storage and informal social support were not found to influence moderate to severe dementia. CONCLUSIONS: This study determined common and specific factors influencing the ACP participation of people with different degrees of cognitive impairment. The results could provide evidence for developing targeted interventions for promoting people with different degrees of cognitive impairment to participate in ACP.
Assessing unstated assumptions of patient and public involvement in palliative care with story completion and typology analysis.
Wang Z, Chapman M, Monaghan C … +6 more , Lu VN, O'Connor J, Calvert S, Happell B, Mitchell I, Scholz B
BMC Palliat Care · 2026 Mar · PMID 41820901 · Full text
BACKGROUND: Consumer advocacies emphasize embedding lived experience into palliative care provision. However, tokenistic consumer involvement often hinder meaningful consumer participation in decision-making processes. T...
BACKGROUND: Consumer advocacies emphasize embedding lived experience into palliative care provision. However, tokenistic consumer involvement often hinder meaningful consumer participation in decision-making processes. This study explored stakeholder perception of patient and public involvement in palliative care, identifying barriers and enablers of effective consumer inclusion. METHODS: Using a qualitative story completion approach, we collected narratives written on a fictional consumer engagement scenario by six consumers, seven health professionals, and two palliative care researchers. Analysis revealed underlying assumptions about lived experience contributions and their impact on policy, practice, and quality improvement. RESULT: Consumer representatives draw on personal and family healthcare experiences to inform discussions. However, structural barriers and power imbalances often constrain their ability to be meaningfully included. These dynamics contribute to tokenistic representation, particularly within healthcare decision-making committees. Our analysis identified interrelated factors that perpetuate tokenism. By understanding these tokenism-sustaining dynamics of stakeholder interaction, we can develop support mechanisms to shift stakeholder attitudes and foster environments in which consumers are empowered to lead. CONCLUSION: To realize the full potential of lived experience in palliative care, healthcare systems must invest in resources and frameworks for targeted training, management structures, and clearly defined roles for stakeholders. Authentic consumer inclusion can transform healthcare systems from tokenistic participation to genuine consumer leadership.
TikTok and Bilibili as sources of palliative care information: an analysis of quality and reliability.
Zhou R, Li Y, Yan C … +2 more , Xu C, Feng S
BMC Palliat Care · 2026 Mar · PMID 41820900 · Full text
BACKGROUND: The development and popularization of palliative care have garnered significant attention. Short-video platforms TikTok and Bilibili boast vast audiences, enabling users to readily access related information....
BACKGROUND: The development and popularization of palliative care have garnered significant attention. Short-video platforms TikTok and Bilibili boast vast audiences, enabling users to readily access related information. However, the quality of palliative care content available on these platforms remains uncertain. OBJECTIVE: This study aims to evaluate the quality and reliability of Chinese-language palliative care-related short videos on the TikTok and Bilibili video-sharing platforms. METHODS: We selected the top 100 Chinese-language palliative care videos from Bilibili and TikTok based on comprehensive rankings, categorizing them by source and content. Three scoring tools—Global Quality Score (GQS), JAMA, and modified mDISCERN—were used to evaluate video quality and reliability. RESULTS: The 200 videos included in this study primarily originated from five sources: individual creators (n = 79, 39.5%), healthcare practitioners (n = 64, 32%), news media (n = 28, 14%), for-profit organizations (n = 15, 7.5%), and non-profit organizations (n = 14, 7%). Based on content, videos were categorized into six themes: relevant concepts (n = 98, 49%), practice examples (n = 85, 42.5%), life education (n = 74, 37%), specific service details (n = 71, 35.5%), industry status (n = 45, 22.5%), and future outlook (n = 25, 12.5%). Regarding video quality and reliability, palliative care-related content on TikTok and Bilibili demonstrated lower quality. TikTok’s median GQS, JAMA, and mDISCERN scores were 2.00, 1.00, and 2.00, respectively, while Bilibili’s median scores for these metrics were 3.00, 2.00, and 2.00. Videos posted by healthcare professionals scored significantly higher on GQS (p < 0.05), mDISCERN (p < 0.01), and JAMA (p < 0.05) compared to non-professionals. Likes, shares, and comments showed a weak positive correlation with video quality, while likes and comments exhibited a weak negative correlation with video duration. CONCLUSION: This study found that the number of Chinese-language palliative care videos on TikTok and Bilibili is limited, with generally low quality and reliability. Videos posted by healthcare professionals demonstrated higher quality and reliability. Content-wise, these videos effectively conveyed basic palliative care concepts to the public, aiding in the dissemination of life education. Future efforts should encourage healthcare professionals to produce more high-quality video content to promote public awareness of palliative care.
Influence of a day hospice on the quality of life of palliative care patients: an interview-based qualitative survey.
Kaiser U, Vehling-Kaiser U, Kaiser F … +5 more , Hoffmann A, Kaiser E, Fiedler M, Rechenmacher M, Kaiser F
BMC Palliat Care · 2026 Mar · PMID 41814265 · Full text
BACKGROUND: In addition to the established forms of outpatient palliative care, day hospices have been available in Germany as a further component of care for several years. However, only a few day hospices currently exi...
BACKGROUND: In addition to the established forms of outpatient palliative care, day hospices have been available in Germany as a further component of care for several years. However, only a few day hospices currently exist in Germany, and data on the effects of day hospices, particularly on the quality of life and care situation of the patients concerned, are not sufficient. Therefore, this study aimed to investigate the influence of day hospice care on the quality of life of palliative care patients. METHODS: This qualitative interview study included palliative care patients at a day hospice in Lower Bavaria. In collaboration with SINUS Markt- und Sozialforschung GmbH, Heidelberg, qualitative guided interviews were conducted between October and December 2024. The interview guide was developed by the team of authors in collaboration with SINUS GmbH and was agreed upon after several rounds of discussions. Interviews were recorded, transcribed verbatim, and anonymized. The transcripts were evaluated using hermeneutic text interpretation. RESULTS: A total of 20 palliative care patients (13 females and 7 males) with an average age of 70.9 years (range, 56–90 years) participated in the study. All participants had a malignant disease. Participants reported that visiting the day hospice improved their quality of life. They reported that social factors were more important than medical factors in improving quality of life. The aspects of community, professional support and guidance, and relief for relatives were cited as particularly important. CONCLUSIONS: The participants perceived the day hospice as a place of peace and relaxation where they could regain strength and confidence and rediscover meaning and joy in their lives. Therefore, day hospices are a fundamentally valuable component of outpatient palliative care. The further development of this care structure will be closely watched with great interest. TRIAL REGISTRATION: The study was registered as part of the IMPULS-Study in the German Register of Clinical Studies (DRKS-ID: DRKS00031613; Date of registration: 04 April 2023) and the Display portal of the Center for Clinical Studies of the University Hospital Regensburg (Z-2022-1734-6; Date of registration: 01 October 2022).
Parental experiences in pediatric advance care planning for children with life-limiting illnesses: a qualitative meta-synthesis.
He S, Shen K, Huang B … +1 more , Zhang J
BMC Palliat Care · 2026 Mar · PMID 41808155 · Full text
OBJECTIVE: To systematically synthesize the experiences of parents of children with life-limiting illnesses (LLIs) in pediatric advance care planning (pACP), extract core perceptions and influencing factors, and provide...
OBJECTIVE: To systematically synthesize the experiences of parents of children with life-limiting illnesses (LLIs) in pediatric advance care planning (pACP), extract core perceptions and influencing factors, and provide practical guidance to optimize the clinical implementation of pACP. METHODS: A systematic search was conducted in the Cochrane Library, PubMed, Embase, CINAHL, Web of Science, Scopus, China National Knowledge Infrastructure (CNKI), and Chinese Biomedical Literature Database (CBM) for qualitative studies related to parental involvement in pACP for children with LLIs. The search period was from database inception to April 2025. The aggregative meta-synthesis method was employed for data analysis and synthesis. RESULTS: A total of nine qualitative studies were included, from which 33 themes were identified and structured into ten themes and corresponding subthemes. These themes and subthemes were further synthesized into three core findings: (1) Behavioral coping patterns of parents in pACP; (2) Parental perceptions and experiences regarding the value of pACP; and (3) Challenges and barriers encountered by parents in engaging with pACP. CONCLUSION: To facilitate the effective implementation of pACP, it is crucial to respect children’s preferences, address parental decision-making needs, and enhance palliative care services along with educational and support systems for pACP. These efforts will improve the acceptability and practical application of pACP in pediatric care.
Care competency scale for family caregivers in home palliative care: Turkish adaptation, validity, and reliability study.
Budak S, Karacan Y, Bacak İ … +1 more , Özer Ş
BMC Palliat Care · 2026 Mar · PMID 41803793 · Full text
BACKGROUND: Palliative care aims to improve the quality of life of patients with life-threatening illnesses and their families. In home-based palliative care, family members often assume primary caregiving roles, making...
BACKGROUND: Palliative care aims to improve the quality of life of patients with life-threatening illnesses and their families. In home-based palliative care, family members often assume primary caregiving roles, making the assessment of their caregiving competence essential for safe and effective care. This study aimed to adapt the Care Competency Scale for Family Caregivers in Home Palliative Care (CCSHPC) into Turkish and evaluate its psychometric properties. METHODS: A methodological study was conducted with primary caregivers of patients receiving home-based palliative care. Data were collected through face-to-face interviews in participants’ homes. The psychometric properties of the Turkish version of the CCSHPC were evaluated using content validity, construct validity, and reliability analyses. RESULTS: The Turkish version of the CCSHPC demonstrated satisfactory content validity. Exploratory and confirmatory factor analyses supported a stable six-factor structure consistent with the original scale. The scale showed acceptable internal consistency and test–retest reliability, indicating that it provides valid and reliable measurements of caregiving competence in the Turkish context. CONCLUSION: The Turkish version of the CCSHPC is a valid and reliable instrument for assessing caregiving competence among family caregivers in home-based palliative care. The scale can be used in clinical practice to identify caregivers’ educational and support needs and to guide the development of targeted nursing interventions.
Quality of end-of-life care among individuals with and without dementia: a Swedish registry-based study.
Kastbom L, Lyth J, Simmons J … +5 more , Martinsson L, Eriksdotter M, Lundström S, Nägga K, Segernäs A
BMC Palliat Care · 2026 Mar · PMID 41794789 · Full text
BACKGROUND: Despite dementia being a leading cause of death and clinical guidelines recommending palliative care, substantial gaps in care quality for this population have previously been shown. This study aimed to inves...
BACKGROUND: Despite dementia being a leading cause of death and clinical guidelines recommending palliative care, substantial gaps in care quality for this population have previously been shown. This study aimed to investigate and compare the quality of end-of-life (EOL) care provided to individuals with and without dementia in different settings. METHODS: In this registry-based study, patients registered in the Swedish Register of Palliative Care (SRPC) between 2011 and 2020 were cross-referenced with patients in the Swedish registry for cognitive/dementia disorders (SveDem). For each patient with dementia registered in SveDem (n = 39 712), two controls without dementia matched by year of birth and gender were selected from the SRPC (n = 79 336). Quality indicators in the SRPC were analyzed by group (dementia/controls) and by place of death, separately, using the chi-squared test. Multiple logistic regression analyses were conducted to examine the association between the quality indicators and having a diagnosis of dementia or not, overall and in different settings. RESULTS: Individuals with dementia were more likely to have staff or family members present at death, to receive documented decisions to shift to EOL care, have symptom assessments made the final week of life and prescription of injectables. However, they were less likely to express preferences for place of death and to be informed about EOL care transitions, especially in hospitals without specialized palliative care. CONCLUSIONS: In this study, individuals with dementia received higher quality EOL care in several domains compared with those without dementia. However, they were less likely to have expressed preferences for place of death. These findings highlight the need for early, proactive care planning to align care with patient preferences and avoid potentially non-beneficial actions.
Use and evaluation of psychological interventions in specialist palliative care settings: results of a national online survey with psychologists and psycho-oncologists.
Scheiner R, Burner-Fritsch IS, Fegg M … +2 more , Feddersen B, Bausewein C
BMC Palliat Care · 2026 Mar · PMID 41792725 · Full text
BACKGROUND: Psychologists play a key role as part of the multiprofessional palliative care team. Meaning-, dignity-centred and existential intervention approaches are designed to preserve dignity, strengthen the sense of...
BACKGROUND: Psychologists play a key role as part of the multiprofessional palliative care team. Meaning-, dignity-centred and existential intervention approaches are designed to preserve dignity, strengthen the sense of meaning and alleviate existential distress at the end of life. However, little is known about psychological interventions used in caring for palliative patients and their relatives. This study aims to describe which psychological interventions are used in palliative care, and to what extent professional experience (years working as a psychologist/psycho-oncologist in a palliative care setting), palliative care setting, and further training in palliative care for psychologists influence the use of specific interventions of psychologists. METHODS: German-wide online survey among psychologists/psycho-oncologists in adult specialist palliative care settings. Psychologists/psycho-oncologists who work in palliative care were recruited by e-mail through palliative care facilities or directly. Ordinal and logistic regressions were performed to examine the influence of professional experience, further training in palliative care for psychologists, and type of palliative care setting on the use of psychological interventions. RESULTS: 105/210 worked predominantly and 66/210 exclusively in palliative settings. 162/205 had further training in psycho-oncology and 36/205 in palliative care for psychologists. Dignity therapy (M = 1.93/elements thereof M = 3.24), meaning-centred therapy (M = 1.63/elements thereof M = 2.79), life review approaches (M = 2.08/elements thereof M = 3.14), or existential therapy (M = 1.37) were used less frequently than cross-school, low-threshold and non-specific interventions like resource collection (M = 6.54), exploration of previous coping strategies (M = 6.24), crisis intervention (M = 6.23) or psychoeducation (M = 5.67). Most common reason were unknown interventions or lack of resources. Professional experience in the palliative setting increased the probability (OR = 1.147, p < .001) of using ‘(hypno)systemic-integrative’ interventions. Use of ‘meaning-dignity-existential’ interventions increased with professional experience (OR = 1.074, p = .045) and further training in palliative care for psychologists (OR = 2.341, p = .044). CONCLUSION: Despite ample evidence and recommendations, the majority of practitioners seem unaware of meaning, dignity and existential interventions or believe them to be unsuitable in palliative care. Targeted further training and a binding framework concept for palliative psychological care is needed.
A new cross-disciplinary model for early integration of palliative care for patients with incurable cancer - an intervention development study.
Swenne J, Stie M, Hansen TF … +5 more , Rasmussen B, Nielsen K, Søndergaard J, Nissen RD, Jensen LH
BMC Palliat Care · 2026 Mar · PMID 41792720 · Full text
BACKGROUND: Patients with incurable cancer face complex physical, psychological, social, and existential challenges. Early integration of palliative care (PC) has proven essential to improve quality of life and well-bein...
BACKGROUND: Patients with incurable cancer face complex physical, psychological, social, and existential challenges. Early integration of palliative care (PC) has proven essential to improve quality of life and well-being, yet implementation remains inconsistent and often delayed. To address this gap, we developed the Cross-PALL model, a cross-disciplinary approach to integrate PC across oncology and primary care. METHODS: Following the Medical Research Council’s framework for complex interventions, we used a participatory design approach to develop the model in collaboration with key stakeholders, including patients, their relatives, healthcare professionals from oncology, primary care, municipal services and representatives from voluntary organizations. Development involved iterative phases of evidence synthesis, needs assessment, field studies, collaborative workshops, and prototyping. For each of these phases, various methods and activities are applied to enhance genuine participation from all collaborators. Implementation determinants were continuously identified using the Consolidated Framework for Implementation Research, and a logic model was constructed to link determinants, implementation strategies, mechanisms, and outcomes. RESULTS: The Cross-PALL model is structured as a standardized care pathway designed to ensure systematic, person-centered, and coordinated PC. Key components include early initiation of PC at diagnosis, routine patient-reported outcome assessments, decision aids, navigation support, structured inter-sectoral communication, and integration of advance care planning. CONCLUSION: The Cross-PALL model offers a feasible, scalable, evidence-informed approach to strengthen early PC integration in oncology. By combining implementation science with participatory design, the model aims to enhance relevance, sustainability, and continuity of care, ultimately supporting patients’ quality of life and well-being.
'Phase of Illness' in oncology patients receiving specialist palliative home care: a mixed methods study on phase-specific burden, needs and use of resources.
Bernhardsgrütter D, Baum E, Gehrig L … +6 more , Klein U, Neher A, Nertinger S, Ott S, Ziltener U, Kobleder A
BMC Palliat Care · 2026 Mar · PMID 41787433 · Full text
BACKGROUND: Data on ‘Phase of Illness’ in specialist palliative home care are not available in Switzerland. Our aim was to investigate oncology patients’ and family caregivers’ experiences of burden, needs and correspond...
BACKGROUND: Data on ‘Phase of Illness’ in specialist palliative home care are not available in Switzerland. Our aim was to investigate oncology patients’ and family caregivers’ experiences of burden, needs and corresponding resource use within each ‘Phase of Illness’ and therefore to obtain an in-depth description of the characteristics of each ‘Phase of Illness’. METHODS: Convergent parallel mixed methods design. Quantitative study strand (91 adult oncology patients and 54 family caregivers): medical/sociodemographic characteristics, phase-specific symptoms, burden, needs, use of resources. Qualitative study strand: semi-structured interviews with 8 patients and 12 family caregivers; focus group interviews with 20 nurses. Data analysis: factorial ANOVA, repeated-measurement ANOVA, qualitative content analysis, joint display tables. RESULTS: Our analysis revealed the following core themes and priorities for action of each ‘Phase of Illness’: “ambivalence” with the aim to “keep it under control” (stable), “anxiety and uncertainty” with the aim of “de-escalation” (unstable), “the tangible end of life” with the aim of “enduring” (deteriorating), “clarity” with the aim of “focusing on essentials” (terminal), and “finality” with the aim of “finding a conclusion” (bereavement). CONCLUSIONS: The findings highlight the vulnerability and complexity of the burden and needs of oncology patients and their families receiving specialist palliative home care in all phases. Particularly in the stable and the bereavement phases, care concepts and funding principles within specialist palliative home care must be ensured to address the psychosocial vulnerability of patients and family caregivers.
Acceptance and commitment therapy improves the quality of life of breast cancer patients by reducing helplessness: a randomized controlled trial.
Song W, Shari NI, Abdullah MFILB … +3 more , Hussin HB, Zhang R, Mansor NS
BMC Palliat Care · 2026 Mar · PMID 41787365 · Full text
BACKGROUND: Breast cancer imposes substantial psychosocial challenges, with helplessness being a key determinant of reduced quality of life (QoL). Acceptance and Commitment Therapy (ACT) has shown promise in improving ps...
BACKGROUND: Breast cancer imposes substantial psychosocial challenges, with helplessness being a key determinant of reduced quality of life (QoL). Acceptance and Commitment Therapy (ACT) has shown promise in improving psychological flexibility, but its role in targeting helplessness and enhancing QoL in breast cancer patients has not been fully established. This randomized controlled trial (RCT) examined the effects of ACT on helplessness, QoL, and their domains. METHODS: This two-arm, parallel, single-blind RCT recruited 80 breast cancer patients from a tertiary care center and randomly assigned them to either ACT (n = 40) or treatment-as-usual (TAU, n = 40). Participants completed the Malay Illness Cognition Questionnaire (ICQ-M) and the Functional Assessment of Cancer Therapy (General and Breast Cancer modules) at baseline (T1), post-intervention at 4 weeks (T2), and follow-up at 12 weeks (T3). ACT was delivered in four weekly sessions between T1 and T2. Data were analyzed using repeated-measures analysis of variance (ANOVA). RESULTS: Sixty-six participants completed all assessments (ACT, n = 32; TAU, n = 34). Compared with TAU, ACT significantly reduced helplessness and improved overall QoL and all QoL domains across time points (all p < 0.05). Effects were maintained at 12-week follow-up. CONCLUSION: ACT is an effective psychosocial intervention for breast cancer patients, producing sustained improvements in QoL partly by reducing helplessness. Integrating ACT into supportive and palliative care may address critical psychological mechanisms affecting patient well-being. TRIAL REGISTRATION: ClinicalTrials.gov, NCT05327153. Registered on April 6, 2022.
Family perspectives on high-quality MAiD service and delivery: a cross-Canada qualitative descriptive study.
Rumsey C, McKennitt DW, Stafinski T … +1 more , Menon D
BMC Palliat Care · 2026 Mar · PMID 41781964 · Full text
BACKGROUND: Medical assistance in dying (MAiD) has been legal throughout Canada since 2016. Legislation has evolved to expand eligibility criteria to non-foreseeable natural deaths. A sole underlying medical condition of...
BACKGROUND: Medical assistance in dying (MAiD) has been legal throughout Canada since 2016. Legislation has evolved to expand eligibility criteria to non-foreseeable natural deaths. A sole underlying medical condition of a mental illness will be included in March of 2027. Provinces and territories are responsible for the development and ongoing improvements to MAiD service and delivery. We aimed to understand the experiences of families and friends of recipients of MAiD and elicit recommendations to improve the quality of MAiD service and delivery and possibly inform future legislation. METHODS: A qualitative descriptive design was utilized to best capture the personal experiences of family and friends of MAiD recipients in Canada. Social media posts and information sharing through end-of-life organizations invited individuals who self-referred for MAiD and family members to participate. Virtual interviews were completed using a semi-structured interview guide. Participants were specifically asked to provide recommendations for changes or improvements to MAiD service and delivery based on their experiences. Data was transcribed and a five-phase qualitative approach to coding and thematic analysis was employed. RESULTS: Thirty-four family and friends from five provinces in Canada participated in the study. They shared their experiences of supporting 35 individuals who received MAiD. Three main themes were identified including the decision to have MAiD, emotional complexity and challenges with the MAiD process. Ten sub-themes identified were symptom burden, loss of autonomy and control, fear of future suffering, system barriers to care, accessibility, respectful and compassionate care, continuity of care, comprehensiveness and accuracy of assessments, guidance and information sharing and emotional support. Participant recommendations for improvements to MAiD service and delivery in Canada are included in this paper. CONCLUSIONS: Participant experiences offer insight into ensuring early intervention that is holistic in nature is provided by a highly skilled healthcare team to individuals who request MAiD. This includes involving and supporting family members; addressing unmet care needs; and offering emotional support, information and guidance throughout the MAiD process.
Enacting compassionate care at the end-of-life in long-term care: a qualitative interpretive study.
Lucchese S, Magcalas J, Sussman T … +6 more , Hunter PV, Wickson-Griffiths A, Thompson G, Venturato L, Rivas VM, Kaasalainen S
BMC Palliat Care · 2026 Mar · PMID 41781933 · Full text
BACKGROUND: Approximately one-quarter of the Canadian population will die in long-term care (LTC) homes, highlighting the importance of improving end-of-life (EOL) care in these settings. There is a growing recognition o...
BACKGROUND: Approximately one-quarter of the Canadian population will die in long-term care (LTC) homes, highlighting the importance of improving end-of-life (EOL) care in these settings. There is a growing recognition of the need to integrate palliative approach to care in these settings. Central to this approach is compassionate care, which supports the emotional, psychological, and spiritual needs of residents and their families at EOL. Compassion is fundamental to person-centered care and plays a critical role in shaping how staff and families experience dying, death and bereavement. Compassion in LTC settings fosters connection, meaning and dignity at the EOL. This study explored the perceptions of nurses and bereaved family members regarding their experiences with EOL and bereavement practices, and how enacting compassionate care supported residents dying in LTC homes across Canada. METHODS: This qualitative study was conducted across four LTC homes in Ontario, Manitoba, Saskatchewan, and Alberta. Using an interpretive qualitative design, we conducted semi-structured interviews with LTC nurses and bereaved family caregivers to examine how compassionate care is practiced in LTC settings. The analysis focused on how acts of compassion support both staff and family caregivers during the EOL process and contribute to the experience of a “good death” for residents. RESULTS: A total of 26 family members and 13 LTC staff were interviewed. Three major themes emerged: (1) nurturing compassionate care within relationships, (2) integrating family as a team member to promote compassionate care, and (3) sustaining compassionate care practices in LTC. Several subthemes further elaborated on these core findings. CONCLUSION: Compassionate care is an essential and highly valued component of EOL care in LTC settings. Findings highlight the importance of supporting compassionate care as an integral part of a palliative approach to care, emphasizing the need for system wide initiatives to sustain and enhance such practices in LTC settings. CLINICAL TRIAL: Not applicable.
New technology must support, not restrict humaneness: a qualitative interview study on the potential influences of a new digital system on specialist palliative home care.
Weisser A, Öhl N, Mahlein AK … +9 more , Peters J, Simon M, Schmitt-Rüth S, Zakreuskaya A, Nissen M, Eskofier B, Ostgathe C, Steigleder T, Heckel M
BMC Palliat Care · 2026 Mar · PMID 41776579 · Full text
BACKGROUND: Electronic health applications are playing an increasingly significant role in modern healthcare systems. Therefore, the European Union proposed GAIA-X - a digital ecosystem that facilitates data exchange and...
BACKGROUND: Electronic health applications are playing an increasingly significant role in modern healthcare systems. Therefore, the European Union proposed GAIA-X - a digital ecosystem that facilitates data exchange and sovereign data usage. TEAM-X aims to implement GAIA-X in healthcare, this study focuses on palliative care. Especially in this vulnerable context, identifying opinions of prospective users during development ensures that their needs as well as objectives and principles of palliative care are met. This study aims to gather perceptions and expectations regarding digital technologies in specialist palliative home care, exemplified by a proposed system. METHODS: We conducted a qualitative study using semi-structured, problem-centered interviews with employees and informal caregivers in specialist palliative home care. Participants were introduced to the conceptual TEAM-X system as well as different care scenarios as impulses for possible changes and were asked about their expectations for benefits and challenges, and requirements for such a system. Transcripts were analyzed using content structuring qualitative analysis complemented by a linguistic analysis that examined personal attitudes towards technology through language patterns. RESULTS: Nine employees and three informal caregivers agreed to participate. Interviewees highlighted several potential benefits of the planned system, some of them addressing challenges of the current care situation, like facilitated data exchange between healthcare professionals, reduced burden on informal caregivers, and optimized care processes. Challenges included concerns about system feasibility, data handling procedures and fears that technology might compromise humaneness. Linguistic analysis revealed varying levels of technology affinity, while the relevance for care and the alignment with palliative care principles were rated mainly high. As requirements, participants emphasized the importance of maintaining humaneness in care and ensuring that technology serves as a supportive tool rather than a restrictive element. CONCLUSIONS: Despite its conceptual nature, the TEAM-X system elicited valuable user insights, identifying both benefits and critical requirements for successful implementation. Meeting the concrete and realizable derived requirements thoroughly, such as enhancing data security, maintaining human interaction, and ensuring user-friendliness, could enable the system to support specialist palliative home care effectively. Future research should validate these findings and explore implementation in diverse healthcare contexts.
Aggressive end-of-life care among in-hospital decedents in China: differences by cancer status, timing, and associated factors.
Wu B, Yi Y, Yu P … +7 more , Luo H, Liu J, Peng Y, Cao Y, Zhang Y, Wang H, Gao W
BMC Palliat Care · 2026 Mar · PMID 41776479 · Full text
BACKGROUND: Aggressive end-of-life (EOL) care is common in hospitals, yet contemporary evidence from mainland China comparing cancer and non-cancer decedents—particularly regarding timing of interventions—is limited. OBJ...
BACKGROUND: Aggressive end-of-life (EOL) care is common in hospitals, yet contemporary evidence from mainland China comparing cancer and non-cancer decedents—particularly regarding timing of interventions—is limited. OBJECTIVES: To quantify Aggressive EOL care intensity and timing during terminal hospitalization among cancer and non-cancer decedents, identify associated factors, and assess temporal trends. METHODS: We conducted a retrospective observational study of adult in-hospital decedents (≥ 18 years) at a tertiary teaching hospital in Nanchang, China (August 1, 2017–December 31, 2024). The primary outcome was a core Aggressive EOL care intensity score (0–5), defined as the unweighted sum of five domains (CPR-related interventions, respiratory support, renal support, circulatory support, and ICU death). Secondary outcomes were high-intensity Aggressive EOL care (score ≥ 2 and ≥ 3). Timing was assessed using population-level occurrence within ≤ 7 days before death and among recipients, the most proximal (final recorded) occurrence relative to death. Multivariable Poisson regression with robust standard errors and logistic regression were used. Temporal trends were assessed using adjusted generalized linear models. RESULTS: Among 3,205 decedents, 990 (30.9%) had cancer. Non-cancer decedents had higher Aggressive EOL care use across all domains and higher intensity (≥ 3 domains: 22.9% vs. 6.7%). Non-cancer status was associated with a higher core aggressive EOL care intensity score (adjusted IRR 2.22, 95% CI 1.96–2.44), and emergency admission showed the strongest association with higher intensity (IRR 1.75, 1.66–1.85). Among recipients, the most proximal CPR-related intervention occurred within ≤ 7 days in 98.2% and on the day of death in 80.4%. Temporal trends differed by cancer status (P for interaction = 0.047). CONCLUSIONS: Aggressive EOL care is common and occurred predominantly near death, with substantially higher multi-domain intensity among non-cancer decedents. Emergency admission emerges as a key leverage point for timely goals-of-care communication and earlier, diagnosis-agnostic palliative integration.
German-language adaptation of the Bereavement Risk Assessment Tool (BRAT): findings on the inter-rater reliability.
Klug K, Müller H, Bongard S … +4 more , Sibelius U, Eul B, Huys T, Berthold D
BMC Palliat Care · 2026 Mar · PMID 41772570 · Full text
BACKGROUND: Prolonged Grief Disorder (PGD) affects approximately 10% of the bereaved adults, with prevalence rates in Germany ranging between 4.7–5.4%. Early identification through pre-death risk assessment is crucial fo...
BACKGROUND: Prolonged Grief Disorder (PGD) affects approximately 10% of the bereaved adults, with prevalence rates in Germany ranging between 4.7–5.4%. Early identification through pre-death risk assessment is crucial for optimal bereavement care, yet no validated German-language instrument exists. The Bereavement Risk Assessment Tool (BRAT) represents a promising solution but requires cultural adaptation and validation. The aim of this study was to adapt the BRAT for German-speaking countries and evaluate its inter-rater reliability among healthcare professionals in palliative care and hospice settings. METHODS: A cross-sectional reliability study was conducted online. The BRAT was translated into German using forward and backward translation methodology, resulting in the Multiprofessioneller Fragebogen zur Trauerverarbeitung (MFT). Participants evaluated four case vignettes featuring 10 bereaved family members using the 40-item MFT. Inter-rater reliability was assessed using Gwet's AC and Krippendorff's α across multiple risk categorizations. RESULTS: A total of 55 healthcare professionals (78.2% female, M = 51.5 years) working in German palliative care and hospice settings were recruited. Participants included diverse professional groups: nursing staff, pastoral care workers, medical doctors, psychologists, and social workers. The MFT demonstrated good to excellent inter-rater reliability across most items. The majority of items showed good to almost perfect agreement between raters. Notable variations emerged between professional groups, with inter-rater reliability being influenced by the number of response categories used for risk assessment. CONCLUSIONS: The German adaptation represents a reliable tool for pre-death bereavement risk assessment in German-speaking healthcare settings. Profession-specific training programs may enhance consistency across occupational groups. Further validation studies examining predictive validity for PGD outcomes are warranted.
Perspectives of Chinese nurses on the feasibility of nurse prescription authority in palliative care: a qualitative study.
Zhou Y, Kang Y, Zhu Q … +4 more , Dong S, Wang D, Yan T, Yuan L
BMC Palliat Care · 2026 Mar · PMID 41772545 · Full text
BACKGROUND: Palliative care is an essential component of quality nursing, addressing patients’ comprehensive physical, psychological, social, and spiritual needs. However, the lack of prescribing authority for palliative...
BACKGROUND: Palliative care is an essential component of quality nursing, addressing patients’ comprehensive physical, psychological, social, and spiritual needs. However, the lack of prescribing authority for palliative care nurses in China leads to delays or inconveniences in palliative care services, thereby compromising the quality of end-of-life care. Therefore, we conducted a qualitative study to explore the perspectives and feasibility of implementing nurse prescribing authority among Chinese palliative care nurses or nursing managers. METHODS: Semi-structured interviews were conducted with 13 nurses and nursing managers working in the field of palliative care in China. The collected data were analyzed and summarized using descriptive phenomenological approach to identify key themes and insights. All data were treated with strict confidentiality, and recordings and transcriptions were made with the participants’ consent. RESULTS: Three main themes and six sub-themes were identified: Attitudinal Divergencce (Supportive Attitudes、Opposing Attitudes)、Qualification Certification (Qualification Requirements、Training and Certification)、Scope and Restrictions (Prescriptive Scope、Authority and Responsibility). CONCLUSIONS: This study provides an in-depth analysis of the perceptions and expectations of Chinese nurses and nursing managers regarding nurse prescribing authority in palliative care, offering significant implications for future pilot implementation of nurse prescribing in China. When introducing nurse prescribing authority in palliative care settings, it is essential to establish clear certification criteria for applicants, define the scope and limits of prescribing privileges, and develop multi-dimensional legal, regulatory, and policy frameworks to supervise and safeguard its practice.
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