BMC Palliative Care[JOURNAL]
Sun
200 papers
"Triggering the palliative intent"?: A qualitative implementation evaluation of a prognostication model for advanced dementia (PRO-MADE) in a geriatric tertiary care setting for the integration of early palliative care.
Subramaniam A, Tan WS, Tan HTR … +4 more , Wang Q, Ding YY, Hum A, PRO-MADE Implementation Group
BMC Palliat Care · 2026 May · PMID 42121115 · Full text
BACKGROUND: Prognostication uncertainty in advanced dementia impedes timely palliative referrals. Despite rapid development of dementia prognostication models, most have not progressed beyond external validation, with im...
BACKGROUND: Prognostication uncertainty in advanced dementia impedes timely palliative referrals. Despite rapid development of dementia prognostication models, most have not progressed beyond external validation, with implementation in routine clinical practice as part of the electronic medical record system remaining underexplored. Empirical gaps exist in understanding interdisciplinary perspectives from palliative and geriatric specialties regarding implementation complexities of such hospital-based innovations. This formative study evaluated implementation of a validated PROgnostic Model for Advanced DEmentia (PRO-MADE) as a clinical decision support tool in a Singapore tertiary care setting. PRO-MADE informs physicians of patients' one-year mortality risk to initiate end-of-life care plans, including inpatient specialist and community palliative care referrals. METHODS: Focus group discussions and in-depth interviews with key stakeholders were analysed and triangulated through rapid deductive-inductive qualitative approach using template analysis, underpinned by the Consolidated Framework for Implementation Research and its Outcomes Addendum. Through maximum variation purposive sampling, 30 professionals across the hospital and community settings participated in seven focus group discussions and two in-depth interviews. Twelve physician implementers from the geriatric medicine specialty, eight healthcare professionals from the palliative medicine specialty, and 10 community-based multidisciplinary palliative care professionals were involved. RESULTS: Five main themes characterise the complexities shaping PRO-MADE's adoption and implementation across key interrelated contextual domains: outer and inner settings (alignment with and operationalisation of palliative care related policies), inner setting and innovation (competing views between disciplines on workflow integrability in clinical practice), inner setting and individuals (alignment of implementation intent with clinical setting; accessibility and adaptation of the electronic medical record system for implementation), and outer setting and individuals (relevance of prognostication for palliative care delivery to patients and families). Findings reflect that implementing prognostication-informed care models involve navigating implementers' professional role and identity preservation in managing end-of-life care, compatibility with clinical practice, and family's needs and readiness. CONCLUSIONS: This implementation research study uncovered factors at the structural, disciplinary identity, interprofessional and patient-caregiver-provider levels influencing PRO-MADE's adoption and implementation for end-of-life care planning and palliative support. Findings suggest the need for targeted implementation strategies, including early stakeholder engagements and adapting integration to clinical settings and patient-family needs to optimise implementation success.
Prognosis prediction for end-stage pancreatic cancer with home medical care: A retrospective cohort study conducted at multiple institutions in Hiroshima.
Yamane H, Yoshimitsu A, Ota H … +10 more , Akimoto E, Abe T, Kawamoto J, Sakai R, Yamashina A, Mikami Y, Yamaguchi T, Oda Y, Yamane M, Maruyama N
BMC Palliat Care · 2026 May · PMID 42116091 · Full text
BACKGROUND: Home medical care provision has become more significant as the Japanese population continues to age. However, the number of patients with end-stage pancreatic cancer receiving home medical care remains limite...
BACKGROUND: Home medical care provision has become more significant as the Japanese population continues to age. However, the number of patients with end-stage pancreatic cancer receiving home medical care remains limited, regardless of the patients' strong preference for home medical care. Additionally, prognostic prediction in patients with end-stage pancreatic cancer receiving home medical care is not well validated, which limits the ability of clinicians to plan effective palliative interventions. Therefore, in this study, we aimed to identify the prognostic factors associated with overall survival (OS) in patients with end-stage pancreatic cancer receiving home medical care and to develop a new prognostic scoring system. METHODS: This nine-center, retrospective study included patients with end-stage pancreatic cancer who were treated with home medical care between 2021 and 2025 in Japan. Univariate and multivariate analyses were performed to identify independent prognostic factors associated with OS. A prognostic scoring system was developed based on the factors identified in the multivariate analysis. RESULTS: In total, 168 (76 male and 92 female) participants were included in this study. The median OS with home medical care was 30 days. Multivariate analysis revealed that a history of opioid use before the initiation of home medical care, the presence of peritoneal dissemination, and a modified Glasgow Prognostic Score (mGPS) of 2 were independently associated with poor OS at home. Stratification based on the above factors demonstrated that patients presenting with two or more risk factors had significantly worse home survival than did those with one or no risk factors (24 versus 45 days, p < 0.001). CONCLUSIONS: This study identified prior opioid use, peritoneal dissemination, and a mGPS of 2 as independent risk factors for OS in patients with end-stage pancreatic cancer receiving home medical care. These results indicate that assessing these factors may aid healthcare providers in making informed decisions and optimizing supportive care strategies tailored to patient prognosis in the home medical care setting.
Silent wounds: violence and adverse experiences in parents caring for terminally ill children in palliative care.
Guadarrama-Orozco J, Romero-Mendoza M, Mendoza-Martínez MG … +3 more , Peláez-Ballestas I, Manrique de Lara A, Muñoz-Pedraza M
BMC Palliat Care · 2026 May · PMID 42108452 · Full text
BACKGROUND: Primary caregivers of paediatric palliative care patients-mostly women-are disproportionately exposed to adverse events and violence, both directly related to the experience of disease and to other stressful...
BACKGROUND: Primary caregivers of paediatric palliative care patients-mostly women-are disproportionately exposed to adverse events and violence, both directly related to the experience of disease and to other stressful life events. These experiences have been associated with a higher risk of psychopathology, which in turn impacts the children under their care. The purpose of this study was to describe the experiences of violence among primary caregivers of palliative care patients in a children's hospital in Mexico City and to analyse how these experiences affect their caregiving capacity. METHODS: A qualitative study was conducted in which narratives were reconstructed from semi-structured interviews with primary caregivers, non-participant observations, and hospital documentation. Caregivers from 21 families with a child receiving palliative care participated in the study. Data analysis was performed using Atlas.ti software, with further triangulation between researchers and a multidisciplinary team of health professionals. RESULTS: Most caregivers narrated multiple and diverse experiences of violence across the lifespan, interwoven with intergenerational impacts. Experiences of violence were categorized into four groups: adverse childhood experiences, stressful life events in adulthood, onset of disease in the child, and consequences of disease. Violence was frequent among participants, and exposure to constant stressful life events had a negative impact on their ability to cope with adverse experiences, including the child's illness. CONCLUSIONS: Recognizing and addressing the violence experienced by female caregivers is essential to paediatric palliative care practice. Prevention of re-traumatization and vicarious trauma among patients, families, and providers is needed to improve therapeutic interactions. Individualized interventions for survivors of violence could reduce the burden of disease on caregivers and disrupt intergenerational cycles of violence.
Advance care planning uptake in the severely frail.
Lim KS, Khine HK, Rosario BH
BMC Palliat Care · 2026 May · PMID 42106761 · Full text
BACKGROUND: Older adults with severe frailty (Clinical Frailty Scale [CFS] 7-9) have high short-term mortality and are often approaching the end of life. Despite this, uptake of Advance Care Planning (ACP) remains low. T...
BACKGROUND: Older adults with severe frailty (Clinical Frailty Scale [CFS] 7-9) have high short-term mortality and are often approaching the end of life. Despite this, uptake of Advance Care Planning (ACP) remains low. This study aimed to examine the rate and timing of ACP referral and completion among hospitalized patients with severe frailty. METHODS: We conducted a retrospective observational study of patients aged ≥ 65 years with documented CFS scores of 7-9 admitted to the geriatric medicine wards of a public tertiary hospital in Singapore between July and September 2024. The primary outcome was the proportion of patients with completed ACPs. Secondary outcomes included ACP referral and completion rates, time from admission to ACP referral and completion, mortality at 30 days and 6 months, stated care preferences, and place of death. Descriptive statistics were used to summarize patient characteristics and outcomes. RESULTS: Among 86 patients with severe frailty (mean age 84.8 years; 72.1% female), 14 (16.3%) had completed ACPs prior to admission. Of the remaining 72 patients, 17 (23.6%) were referred for ACP within 90 days, of whom 6 (35.3%) completed ACP discussions. In-hospital mortality was 5.8%, and 6-month mortality was 31.4%. Among patients who died within 6 months, 69.5% died in hospital. Patients with completed ACPs more frequently died at home or with home hospice care. CONCLUSIONS: Our study demonstrates that hospitalized patients with severe frailty have high short-term mortality but low rates of ACP referral and completion. Earlier and systematic initiation of ACP at the point of frailty identification may improve alignment of end-of-life care with patient preferences and reduce unwanted hospital deaths.
A scoping review of palliative care assessment tools.
Aakataa M, Khalil H
BMC Palliat Care · 2026 May · PMID 42104338 · Full text
BACKGROUND: Palliative care requires timely and accurate assessment to support patient-centred outcomes. However, existing tools vary widely in purpose, design, and implementation. Understanding the current landscape of...
BACKGROUND: Palliative care requires timely and accurate assessment to support patient-centred outcomes. However, existing tools vary widely in purpose, design, and implementation. Understanding the current landscape of available tools is essential to guide future innovation. This review aimed to systematically identify and map published literature on palliative care assessment tools, focusing on their purpose and domains assessed, with consideration of reported validation, usability, and implementation characteristics. METHODS: Scoping review conducted using the Joanna Briggs Institute (JBI) methodology and reported according to the PRISMA-ScR checklist. Ovid MEDLINE, CINAHL, and the Cochrane Library were searched for peer-reviewed studies published in English from 2005 to 2024. Studies were included if they assessed tools used in palliative care populations for symptom assessment, quality of life, early identification, psychosocial evaluation, or caregiver support. Study screening, data extraction, and synthesis were completed in Covidence. RESULTS: A total of 299 studies from over 40 countries were included, representing 813,819 participants. The Edmonton Symptom Assessment System (52.1%) was the most frequently used tool. Most tools focused on symptom assessment (27%) and quality of life (22%), with limited attention to caregiver burden (4%), spiritual wellbeing (4%), or social support (4%). Ninety-four studies (31%) reported positive perceptions of tool utility, and one reported a negative outcome. Key gaps included cultural adaptation, digital integration, multi-user access, and holistic scope. CONCLUSIONS: Although many tools support clinical assessment, few address the complexity of holistic, person-centred care. There is an urgent need for co-designed, culturally sensitive, and digitally enabled tools to support equitable palliative care delivery.
A structured communication model for advance care planning in Chinese oncology nursing: a mixed-methods participatory action research study.
Shih YA, Sun J, Lu Q
BMC Palliat Care · 2026 May · PMID 42104303 · Full text
BACKGROUND: Despite the global recognition of advance care planning as a critical component of patient-centred end-of-life care, its implementation remains challenged by skill-based deficiencies (e.g., inadequate trainin...
BACKGROUND: Despite the global recognition of advance care planning as a critical component of patient-centred end-of-life care, its implementation remains challenged by skill-based deficiencies (e.g., inadequate training), cultural and communication barriers, and system-level structural impediments within healthcare settings. This study aimed to develop and implement a structured advance care planning communication model to improve nurses' communication practices and facilitate patient engagement in end-of-life care discussions. METHODS: A participatory action research design with embedded mixed methods was conducted from September 2020 to September 2022 in an oncology palliative care unit at an oncology hospital in Beijing, China. The study integrated the Advance Directive Decision-Making Model with the Meaning-Making Intervention. Data collection included surveys, participant observation, and semi-structured interviews across three phases. Four iterative action cycles were used to co-develop and refine the communication model. Quantitative and qualitative data were triangulated through team debriefings to generate meta-inferences. RESULTS: Initial assessments included surveys and observations. Nurses held a foundational knowledge of advance care planning principles (mean knowledge: 68.52%), but expressed hesitation to initiate end-of-life discussions. Iterative cycles developed a three-step communication model. The steps were: (1) Recognize the Present, (2) Life Review, and (3) Face the Future. Post-action data showed improvements in in all areas. Nurses' knowledge increased significantly (mean score increase: 1.90 points). Attitudes scores increased (mean increase = 0.90) Behaviours scores also increased (mean increase = 0.57). Paired t-tests confirmed significant differences for all measures (p < 0.001). Key improvements attributed to the model included the development of time-efficient communication strategies, structured support systems, and adaptive communication techniques tailored to patient needs. CONCLUSIONS: The structured three-step advance care planning communication model improves nurse-patient communication and patient engagement in end-of-life decision-making. This model provides a practical framework for initiating and guiding advance care planning conversations in oncology care. Future research is needed to evaluate its applicability in diverse settings and its long-term impact on patient outcomes.
Pre- and post-bereavement experiences and support needs of family caregivers in hospital settings in Türkiye: a qualitative interview study.
Dönmez ÇF, Karaağaç M, Bakır E … +2 more , Bailey C, Seckin M
BMC Palliat Care · 2026 May · PMID 42098779 · Full text
BACKGROUND: Timely and adequate bereavement support is associated with better mental health and psychosocial outcomes for bereaved individuals. There is limited research focusing on how the pre- and post-death process in...
BACKGROUND: Timely and adequate bereavement support is associated with better mental health and psychosocial outcomes for bereaved individuals. There is limited research focusing on how the pre- and post-death process in the hospital setting influences family caregivers' perceptions and support needs before and after bereavement. The aim of this study is to explore the pre-and post-bereavement experiences and support needs of family caregivers in hospital settings in Türkiye. METHODS: A qualitative exploratory study using semi-structured in-depth interviews analysed thematically was conducted to provide a detailed understanding of the bereavement experience in the context of bereaved family caregivers' in hospital settings. Purposive sampling was used to recruit bereaved family caregivers (n = 21) who had experienced caring for an adult patient with life-threatening conditions in hospital. RESULTS: Twenty-one bereaved family caregivers participated, over half of the participants (62%) were female and, participant age ranged between 20 and 52 years, with the average age being 39.8 years. Four themes were generated: (1) Pre-bereavement process, (2) Communication during the dying stages, (3) Post-bereavement process and, (4) Bereavement support needs of family caregivers. Many caregivers reported that the lack of information about the disease process of their close person, unfinished business, and cultural barriers to the discussion of death made the bereavement process more difficult. Social support, culturally specific coping strategies, support from psychiatric consultation liaison nurses and empathetic communication were identified as facilitators of the bereavement process for family caregivers. CONCLUSIONS: We recommend a culturally sensitive family-centered approach, compassionate and empathetic communication, and the integration of psychiatric consultation liaison nurses into hospital bereavement care systems to provide dignified and culturally adapted bereavement support care in hospitals. The insights gained from the perspective of family caregivers may be utilised by mental health professionals and policy makers to improve hospital-based bereavement care. By exploring the perspectives of family carers in a middle-income country, our research contributes to a more inclusive understanding of bereavement support needs globally, particularly in culturally diverse contexts where research has been limited.
Access to hospice and palliative care for people with a migration background: a qualitative study on challenges and recommendations in end-of-life care.
Ölcer S, Albert A, Jansky M … +2 more , Nauck F, Banse C
BMC Palliat Care · 2026 May · PMID 42098733 · Full text
BACKGROUND: Systemic inequalities shape healthcare access, disproportionately affecting people with a migration background in Germany. Empirical studies on this group in hospice and palliative care are quite limited and...
BACKGROUND: Systemic inequalities shape healthcare access, disproportionately affecting people with a migration background in Germany. Empirical studies on this group in hospice and palliative care are quite limited and highlight a gap in understanding the challenges and potential solutions. OBJECTIVES: To explore, from the perspectives of healthcare providers, the challenges faced by patients with a migration background, their families, and healthcare providers in hospice and palliative care. The aim was to improve accessibility, reduce barriers, and ensure that hospice and palliative care services are accessible and inclusive to them. METHODS: A qualitative study was conducted employing directed content analysis of healthcare providers' responses to open-ended questions on end-of-life care. The analysis was guided by a system-facing social determinants of health framework, emphasising systemic and structural factors influencing care services. Healthcare providers recruited from hospice and palliative care facilities across Germany (n = 332). RESULTS: Language barriers, cultural insensitivity, and systemic inequalities were identified by healthcare providers as major obstacles hindering access to hospice and palliative care for patients with a migration background. Healthcare providers emphasised the need for tailored support services, community-based networks and other innovative solutions to improve accessibility and outcomes. Moreover, they highlighted that the emotional burden on all actors involved in hospice and palliative care is exacerbated by language barriers, cultural misconceptions, and the structural complexity of end-of-life care. CONCLUSION: Prioritising equitable and culturally sensitive care as part of broader support services and innovative solutions can enable broad participation in hospice and palliative care, including patients with a migration background and their families, based on mutual trust. Further research is needed to overcome logistical and financial challenges and facilitate the implementation of actionable recommendations within hospice and palliative care services.
Consequences of compassion fatigue in palliative care nurses: the experience of meaninglessness and emptiness in life.
Ghafarzadegan R, Vanaki Z, Mohammadi E … +1 more , Kazemnejad A
BMC Palliat Care · 2026 May · PMID 42092961 · Full text
BACKGROUND: Compassion fatigue, defined as the emotional and physical exhaustion resulting from prolonged exposure to patients' suffering, coupled with a diminished ability to empathize, is a significant occupational haz...
BACKGROUND: Compassion fatigue, defined as the emotional and physical exhaustion resulting from prolonged exposure to patients' suffering, coupled with a diminished ability to empathize, is a significant occupational hazard in palliative care nursing, with potential adverse effects on nurses, healthcare organizations, and patient care quality. Despite its impact, the nuanced consequences of compassion fatigue from the perspective of palliative care nurses remain underexplored. AIM: Due to this issue, this study sought to explore and elucidate the perceived consequences of compassion fatigue among nurses providing palliative/end-of-life care in Iran. METHODS: A qualitative study employing conventional content analysis was conducted. Seventeen Iranian palliative care nurses were recruited via purposive sampling. Data were collected through semi-structured interviews and analysed to identify emergent themes. Ethical approval was obtained from the Ethics Committee of Tarbiat Modares University, and written informed consent was secured from all participants. RESULTS: Four subcategories emerged as key consequences of compassion fatigue: (1)reluctance to remain in the ward or continue nursing, (2)forgetfulness in care delivery, (3)emotional incapacity to manage personal and professional responsibilities, and(4)a pervasive sense of meaninglessness and hopelessness toward life. The overarching theme highlighted a profound existential impact, characterized by diminished motivation and hope, affecting both professional engagement and personal well-being. CONCLUSION: In conclusion, early identification and management of compassion fatigue consequences are critical for nurse managers to enhance resilience, address emotional needs, and reduce turnover intentions.
Spiritual needs in palliative care inpatients: a four-year analysis of clinical data from a tertiary care center.
Frei V, Peng-Keller S, Hertler C … +3 more , Pelz S, Blum D, Schettle M
BMC Palliat Care · 2026 May · PMID 42092942 · Full text
BACKGROUND: Spiritual needs are a core dimension of palliative care, yet their systematic documentation remains limited. This study explores the spiritual needs expressed by palliative care inpatients and examines how th...
BACKGROUND: Spiritual needs are a core dimension of palliative care, yet their systematic documentation remains limited. This study explores the spiritual needs expressed by palliative care inpatients and examines how these needs vary in documentation based on gender, below and above the Swiss retirement age, religious affiliation, and specialty documenting them. METHODS: We conducted a retrospective analysis of 747 electronic health records (EHRs) from the Acute Palliative Care Unit at the University Hospital Zurich (2019-2022). Documentation by psychological and pastoral care services was analyzed using qualitative content analysis along with chi-square test for explorative purposes. Identified needs were categorized according to an adapted four-domain framework (existential, psychological, social/relational, religious). RESULTS: A total of 598 patients were analyzed (median age 68 years (20-97), 52.8% (n = 316) male). We identified 22 distinct spiritual needs. Overall, 61.2% (n = 366) of patients expressed existential needs, 78.9% (n = 472) psychological needs, 66.2% 396) social/relational needs, and 17.4% (n = 104) religious needs. The most common spiritual needs were life reflection (55.5%, n = 332), relationship and family dynamics (43.6%, n = 337), and history of illness (26.8%, n = 160). Women reported significantly more existential fears (p < 0.001), relational themes (p = 0.005), and requests for prayer (p = 0.028). Patients below the retirement age exhibited more needs, including fears (p = 0.019), grief (p = 0.002), and hope (p < 0.001) compared to older patients. Religious affiliation was associated with prayer (p = 0.003) and anointing of the sick (p = 0.036). Psychological services documented spiritual needs in 86.1% of cases (mainly existential and psychological needs), whereas pastoral care (53%) focused on religious themes, including all mentions of sacramental rituals. CONCLUSIONS: This is the first Swiss study to classify spiritual needs based on routine clinical documentation. The findings highlight the prevalence and multidimensionality of spiritual concerns, with psychological needs being most frequently documented, and significant differences observed by age, gender, and religious affiliation. Distinct documentation patterns emerged between psychological and pastoral care, underlining the need for structured assessment tools and interprofessional collaboration. Implementing standardized documentation and training could enhance the visibility and continuity of spiritual care and guide future research and clinical practice.
Comparison of different proxy approaches to determine the need for specialized palliative care in patients with incurable cancer.
Reichel N, Heckel M, Gahr S … +1 more , Ostgathe C
BMC Palliat Care · 2026 May · PMID 42092875 · Full text
BACKGROUND: Patients suffering from cancer can benefit from a timely integration of palliative and end-of-life care. In the literature different approaches are discussed that can be used by health care professionals (as...
BACKGROUND: Patients suffering from cancer can benefit from a timely integration of palliative and end-of-life care. In the literature different approaches are discussed that can be used by health care professionals (as proxies) to determine cancer patients in need for specialist palliative care. Until now data on comparing different tools is scarce. This study compared published methods for detecting patients with advanced and incurable cancer in need for specialist palliative care. METHODS: Data of three hundred and sixteen patients with incurable cancer-collected during a study validating the German version of a screening tool based on NCCN guidelines (Glare) - were used for secondary analysis. The data were used to test the performance of different tools in detecting patients with palliative care needs: two disease-specific classifications (Gaertner, Benthien), the Eastern Cooperative Oncology Group Performance Status (ECOG), the Surprise Question, as well as a combination of the Surprise Question and the German NCCN tool and the Surprise Question and the ECOG score. To quantify which tool performed best, survival, Integrated Palliative Outcome Scale (IPOS - staff version) (one or more items ≥ 3), and the information of a preexistent contact to palliative care served as indicators of real SPC needs in this patient group. RESULTS: The combination of Surprise Question and the German NCCN Screening tool showed a sensitivity between 71.5%-94.3% and specificity between 56.0%-91.3%, while the combination of Surprise Question and ECOG score had a sensitivity between 37.4%-75.7% and specificity between 86.2%-100%. Benthien's classification performed a fair sensitivity (74.8%-91.5%) and a weak specificity (27.3%-39.4%), whereas the guidelines by Gaertner showed high sensitivity (92.2%-100%), but very low specificity in all standards (0.0%-9.9%). CONCLUSION: While the combination of the Surprise Question and the German NCCN screening tool showed the best results in terms of sensitivity and specificity overall, a combination of the Surprise Question and ECOG score proved to be highly specific and as time-efficient in identifying patients in need of SPC, which may be beneficial.
A complex intervention to support the use of sedative drugs in specialist palliative care: results from the iSedPall pilot study.
Ostgathe C, Bausewein C, Schildmann E … +13 more , Heckel M, Kauzner S, Klein C, Kolmhuber-Seibold S, Krauss SH, Kremling A, Odierna B, Rémi C, Schneider M, Seifert A, Ziegler K, Jäger C, Schildmann J
BMC Palliat Care · 2026 May · PMID 42087143 · Full text
BACKGROUND: International studies show intentional sedation to relieve suffering to be a common and relevant treatment in specialist palliative care. The EAPC framework for using sedative drugs has currently been updated...
BACKGROUND: International studies show intentional sedation to relieve suffering to be a common and relevant treatment in specialist palliative care. The EAPC framework for using sedative drugs has currently been updated and national recommendations have been disseminated. However, there was a lack of hands-on materials targeted for healthcare professionals and of information materials for patients and informal caregivers to ensure patient-centred care. The iSedPall study group developed a complex intervention to further support the use of sedative drugs in specialist palliative care. The following pilot study aimed at examining the feasibility of the intervention being applied in different settings and by different professions. METHODS: A sequential explanatory mixed-methods design was applied between 02/23 and 01/24. An online survey (pre-post-test) assessed quantitative data on the feasibility of the outcome indicator `confidence in professional skills`, primary feasibility outcomes, and the implementation process. Focus groups added to the quantitative results. Four specialist palliative care services (inpatient and home care) piloted the intervention for nine months. RESULTS: Global mean scores of primary feasibility outcomes proved the intervention as acceptable, appropriate, and feasible for inpatient and home care settings. The outcome indicator seems to be adequate for measuring changes in healthcare professionals` confidence, especially for physicians. The relevance of the intervention, its impact on practice, and the implementation process have been judged heterogeneously. Promoting (e.g., personal exchange, educational materials) and inhibiting factors (e.g., lack of time and technical resources) for implementation have been stated. CONCLUSIONS: An implementation study would benefit from adaptations regarding the intervention, study design, and implementation strategy. Especially the nursing perspective has to be considered to a greater extent for strengthening the palliative care approach. Context-specific factors seem to play a key role in implementation. Therefore, training of in-group champions, considering local technical and personal resources, and actively engaging the team could mitigate potential barriers and foster the success. Our findings will inform a full-scale implementation study to further explore the use of the intervention by healthcare professionals in clinical practice. TRIAL REGISTRATION: The study was registered in the German Clinical Trials Register (DRKS-ID: DRKS00027241; Date of registration: 10/12/2021; https://www.drks.de/drks_web/setLocale_EN.do ).
Validation of the short-form quality care questionnaire - palliative care in Brazilian patients with heart failure eligible for palliative care.
de Figueiredo JK, Santos-de-Araújo AD, Santos PM … +9 more , Maia MC, Frutuoso VP, Rocha DS, Marinho RS, de Souza Pereira E, Borghi-Silva A, Silva PÍP, Dibai-Filho AV, Bassi-Dibai D
BMC Palliat Care · 2026 May · PMID 42087118 · Full text
BACKGROUND: The Brazilian version of the Quality Care Questionnaire - Palliative Care (QCQ-PC) is an instrument developed to assess the quality of care provided in palliative care. OBJECTIVE: To structurally validate the...
BACKGROUND: The Brazilian version of the Quality Care Questionnaire - Palliative Care (QCQ-PC) is an instrument developed to assess the quality of care provided in palliative care. OBJECTIVE: To structurally validate the Brazilian version of the QCQ-PC for use in individuals with HF eligible for palliative care. METHODOLOGY: This study aimed to structurally validate the QCQ-PC, following the Consensus-Based Standards for the Selection of Health Measurement Instruments (COSMIN). Data were collected using the QCQ-PC, 36-Item Short Form Health Survey Instrument (SF-36), and Minnesota Living with Heart Failure Questionnaire (MLHFQ). Internal consistency was calculated using Cronbach's alpha and, structural validity was assessed using confirmatory factor analysis (CFA). Construct validity was assessed by correlations between QCQ-PC and SF-36. RESULTS: The study sample (n = 113) consisted predominantly of middle-aged to older adults mainly classified as NYHA class I (36.3%) or III (32.7%). The structural validity of the two-domain of the QCQ-PC was confirmed by adequate fit indices: χ²/df = 1.46; CFI = 0.979; TLI = 0.971; RMSEA = 0.064; SRMR = 0.067; and with factor loadings ≥ 0.30. Construct validity was demonstrated by correlations of less than 0.30 between the QCQ-PC and SF-36 domains. Reliability was adequate, with ICC values above 0.80 for both domains, measurement error less than 10%, and Cronbach's alpha greater than 0.70. CONCLUSION: The internal structure with two domains is the most suitable for use in individuals with FH eligible for palliative care through the QCQ-PC. The constructs are valid and reliable, with adequate internal consistency.
Impact of a shared pediatric palliative care program on end-of-life care trends among children: a 10-year retrospective study in Taiwan.
Hung CW, Wu LM
BMC Palliat Care · 2026 May · PMID 42082973 · Full text
BACKGROUND: Early integration of pediatric palliative care (PPC) improves symptom control, communication, and goal-concordant decision-making. Despite these benefits, PPC remains underutilized in many Asian healthcare sy...
BACKGROUND: Early integration of pediatric palliative care (PPC) improves symptom control, communication, and goal-concordant decision-making. Despite these benefits, PPC remains underutilized in many Asian healthcare systems, where referrals are often delayed and most children die in intensive care units (ICUs). METHODS: This retrospective cohort study included children aged 0-18 years who died between 2008 and 2017 at two medical centers in southern Taiwan (n = 294). A shared PPC program was implemented in 2011, embedding palliative specialists within primary care teams. Documentation of do-not-resuscitate (DNR) orders, family meetings, PPC consultations, cardiopulmonary resuscitation (CPR), and place of death were compared across pre-implementation, early post-implementation, and late post-implementation phases. RESULTS: Following implementation, DNR documentation increased from 59.2% to 73.9% (p = .03). Documented family meetings rose from 4.1% to 18.2% (p < .001), and PPC consultations increased from 7.1% to 23.9% (p < .001), suggesting potential improvements in interdisciplinary communication and advance care planning. ICU deaths remained high (87.8%-89.8%), and CPR rates declined but did not reach statistical significance (p = .09). Cancer diagnosis (OR = 7.97, 95% CI 2.71-23.42) and increasing age at diagnosis (OR = 1.12 per year, 95% CI 1.06-1.18) were independently associated with PPC consultation. CONCLUSIONS: Integration of a shared PPC model was associated with improvements in advance care planning and interdisciplinary collaboration. Earlier referral triggers, clinician education, and expansion of community-based PPC services may be important to help reduce high-intensity end-of-life care and better align care delivery with family preferences.
Practices and perspectives on dying at home in Norwegian home care services - a secondary analysis of qualitative data.
Valen K, Enerstvedt ILJ, Håland H … +2 more , Eriksen KÅ, Glette MK
BMC Palliat Care · 2026 May · PMID 42067875 · Full text
BACKGROUND: There is increasing recognition that individuals of all ages with life-limiting conditions benefit from palliative care. Despite a preference for dying at home, most patients still spend their final days in h...
BACKGROUND: There is increasing recognition that individuals of all ages with life-limiting conditions benefit from palliative care. Despite a preference for dying at home, most patients still spend their final days in hospital. The WHO encourages member states to integrate palliative care across all levels of their health system. AIM: This study aims to explore how home care services in a Norwegian municipality implement practices that enable patients to die at home, and how healthcare professionals experience these practices. METHODS: A secondary analysis was conducted using qualitative data originally collected in May 2024 for the evaluation of a structured care model for days at home and home death. The dataset comprised four focus groups, one with members of the project team who had developed the model, one with home care unit managers, and two with healthcare workers involved in applying the structured care model in practice. The secondary analysis was conducted between May and August 2025, using Braun and Clarke's thematic analysis. RESULTS: The analyses resulted in the following three themes, which describe how home care services implement practices enabling patients to die at home, as well as their experiences of this practice: T1) Advancing palliative care through focused projects: enhancing competence and addressing challenges; T2) Spending the final days at home: identifying patients with palliative care needs and providing compassionate and effective care, and, T3) Sharing responsibility versus reducing the workload. Fostering knowledge and support in home-based palliative care. Overall, the findings showed that a recently implemented care model improved focus, procedures and collaboration, but also revealed organizational weaknesses. Palliative home care was seen as a nuanced, nonlinear process shaped by patient and family wishes, and end-of-life meetings with patients and families were described as complex, requiring both skilled care and emotional support. Yet some nurses felt insecure and called for more colleagues with whom they could share their experiences, knowledge, and responsibilities. CONCLUSION: Supported by a newly implemented structured care model, the home care services worked systematically and purposefully to improve the quality of care for patients with palliative needs. However, the data revealed weaknesses in the system, such as a lack of clear reporting guidelines and unclear roles among collaborating healthcare services. Healthcare workers were engaged and described their work as complex and unpredictable, thus underlining the need for confidence, competence, and support from colleagues. Overall, the study demonstrates that palliative home care is enhanced by clearly articulated goals and a comprehensive understanding of the requirements needed to deliver high-quality care.
Prevalence and predictors of do-not-resuscitate orders among advanced cancer patients receiving palliative care at a tertiary cancer center in Jordan: a 10-year retrospective analysis.
Shamieh O, Alrjoub W, Tarawneh R … +10 more , Alarjeh G, Shnikat R, Alhasasneh L, Alzubaidi E, Farsakh FA, Abunasser M, Alnemer M, Shamieh A, Mansour A, Abdel-Razeq H
BMC Palliat Care · 2026 May · PMID 42067859 · Full text
BACKGROUND: In low- and middle-income countries (LMIC), Do-Not-Resuscitate (DNR) discussions are often delayed or omitted, adversely affecting the quality of end-of-life care. Despite the growing recognition of palliativ...
BACKGROUND: In low- and middle-income countries (LMIC), Do-Not-Resuscitate (DNR) discussions are often delayed or omitted, adversely affecting the quality of end-of-life care. Despite the growing recognition of palliative care, limited evidence exists on the timing and determinants of DNR decisions in these settings. OBJECTIVE: To assess the prevalence, temporal trends and predictors of DNR orders among advanced cancer patients receiving palliative care at a tertiary center in Jordan. METHOD: We conducted a retrospective review of all deceased advanced cancer patients who received palliative care at the King Hussein Cancer Center between 2013 and 2022. Demographic, clinical, and code status data at referral and at death were extracted from medical records. Descriptive statistics, chi-square tests, and t-tests were used to identify patterns and associations. RESULTS: Among 5,264 patients were analyzed, 48.9% female, 79.9% married, and 94.6% Jordanian. The most common cancer types were gastrointestinal (26.5%), breast (16.6%), and genitourinary (14.9%). At referral, 26.4% had a DNR order, increasing to 81% at death. Cancer type was significantly associated with DNR status at death (p < .001), with breast and gastrointestinal cancers more likely to have DNR orders. The proportion of DNR orders at death demonstrated an overall upward trend across the study period. CONCLUSIONS: There was a substantial shift from CPR to DNR orders between referral and death primarily influenced by clinical rather than demographic factors. These findings underscore the importance of early advance care planning and targeted training in culturally sensitive end-of-life communication to promote patient-centered decision making.
Persistent nausea burden at peak antiemetic therapy in palliative care: an exploratory study.
Pietsch P, Summerer L, Mair R … +5 more , Müller K, Authier D, Herr W, Rechenmacher M, Schnell A
BMC Palliat Care · 2026 May · PMID 42063062 · Full text
BACKGROUND: Nausea is a common and distressing symptom in palliative care, substantially impairing quality of life. Despite guideline-based antiemetic therapy, a considerable proportion of patients continue to experience...
BACKGROUND: Nausea is a common and distressing symptom in palliative care, substantially impairing quality of life. Despite guideline-based antiemetic therapy, a considerable proportion of patients continue to experience substantial nausea burden. Evidence guiding personalised management strategies in this setting remains limited. This study aimed to identify routinely available laboratory markers and clinical factors associated with persistent nausea burden at peak antiemetic therapy. METHODS: In this retrospective exploratory study, 788 admissions to a specialised palliative care unit (2019-2022) were screened, and 223 cases with documented nausea were included. Nausea burden and associated symptom burdens were assessed at the time of "peak antiemetic therapy", defined as the highest level of antiemetic treatment reached during admission beyond which therapy was not further escalated. Symptom burden was measured using the staff-completed Integrated Palliative Outcome Scale (IPOS). Baseline demographic, clinical, and laboratory variables were assessed at admission. Patients were stratified according to persistent nausea burden (IPOS ≥ 2 vs. < 2). Univariable analyses were performed to identify a core set of associated factors. Baseline variables meeting significance criteria were entered into complete-case binary logistic regression with bootstrap validation (1,000 samples; N = 143). Multiple testing was addressed using the Benjamini-Hochberg (BH) procedure. RESULTS: Persistent nausea burden at peak antiemetic therapy was observed in 33% of patients with nausea. After BH adjustment, vomiting and poor appetite (both IPOS ≥ 2), cystatin C levels, broad-spectrum antiemetic therapy, in-house mortality, ileus, and peritoneal carcinomatosis were significantly associated with persistent nausea burden at peak antiemetic therapy in univariable analyses (BH-adjusted p < 0.05). Of these, the baseline variables ileus, peritoneal carcinomatosis, and cystatin C levels constituted the core set for multivariable analysis. In logistic regression, higher cystatin C levels were associated with lower odds of persistent nausea burden (OR = 0.235; 95% CI [0.08-0.47]; BH-adjusted p = 0.003), whereas peritoneal carcinomatosis was associated with higher odds (OR = 3.967; 95% CI [1.54-12.29]; BH-adjusted p = 0.005). CONCLUSIONS: Persistent nausea burden co-occurred with diverse clinical factors, underscoring its multifactorial nature in advanced disease. Nausea management in palliation remains a major challenge far beyond the application of antiemetics. Prospective studies are warranted.
Factors associated with death anxiety in family caregivers of cancer patients: a systematic review.
Su H, Tam KI, Li Y
BMC Palliat Care · 2026 Apr · PMID 42063012 · Full text
OBJECTIVES: This systematic review synthesizes existing literature to identify the current status and key influencing factors related to death anxiety in family caregivers of cancer patients. METHODS: A comprehensive sea...
OBJECTIVES: This systematic review synthesizes existing literature to identify the current status and key influencing factors related to death anxiety in family caregivers of cancer patients. METHODS: A comprehensive search was conducted across seven databases-PubMed, Embase, PsycINFO, Scopus, Web of Science, MEDLINE, and CNKI on July 26th, 2025, with no time restrictions applied. The quality of all included studies was assessed using the Joanna Briggs Institute critical appraisal tools for cross-sectional studies. RESULTS: Eighteen studies were included in the systematic review. Based on our analysis, death anxiety among family caregivers of cancer patients may be influenced by the following six categories of factors: (a) personal factors, (b) disease and caregiving-related factors, (c) psychosocial factors, (d) self-regulatory factors, (e) other factors, and (f) actor and partner effects. Several specific protective and risk factors related to death anxiety were also identified. CONCLUSION: This review categorizes influencing factors, including protective factors, risk factors, and several contested personal variables, associated with death anxiety. There is a need for longitudinal research to further elucidate the dynamic nature of death anxiety over time. Future studies should adopt a dyadic perspective encompassing both cancer patients and their family caregivers to provide comprehensive insights for healthcare professionals and facilitate the development of effective interventions targeting death anxiety.
Satisfaction with end-of-life care and self-rated health among bereaved family members; a descriptive cross-sectional study in an intensive care context.
Palmryd L, Godskesen T, Alvariza A … +1 more , Rejnö Å
BMC Palliat Care · 2026 Apr · PMID 42062851 · Full text
BACKGROUND: In intensive care units, critically ill patients often require life-sustaining interventions. When these no longer benefit the patient, care is often transferred to end-of-life care. Family members may find t...
BACKGROUND: In intensive care units, critically ill patients often require life-sustaining interventions. When these no longer benefit the patient, care is often transferred to end-of-life care. Family members may find themselves in a stressful situation, since they often act as proxies in decision-making processes, and support the patient nearing the end of life, while also coping with their own grief. The aim of this study is to investigate bereaved family members' satisfaction with care, decision-making, the patients' last hours of life, and their own self-rated health in end-of-life care in an intensive care setting. METHOD: A descriptive cross-sectional design with the questionnaire Family Satisfaction with Care in the Intensive care unit (FS-ICU 24) and its subscales FS-ICU Care and FS-ICU Decision-making was used: Bereaved family members from seven intensive care units in an urban region in Sweden participated. Data were analysed using descriptive and inferential statistics. RESULTS: Bereaved family members (n = 141) reported overall satisfaction with end-of-life care, FS-ICU Total 77.6 (SD = 20.4); FS-ICU Care 79.5 (SD = 19.9), and FS-ICU Decision-making 74.8 (SD = 23.3). Dissatisfaction were reported by 12.3% (n = 17) of the family members with insufficient emotional support, 14.7% (n = 20) inconsistent information, and 17% (n = 24) limited control over patients' care. Family members who rated their health as worse compared to a year ago, reported lower satisfaction in FS-ICU Decision-making (p = 0.05). CONCLUSION: This study shows an overall high satisfaction with end-of-life care in ICUs with summary scores in the upper quarter as measured by the FS-ICU 24. This study also uncovers a lack of attention to the individual needs of family members. Dissatisfaction stemmed from the items concerning insufficient emotional support, inconsistent information, and limited control over patients' care. A markedly dissatisfied subgroup were also identified. These findings underscore the importance of paying attention to family members who express dissatisfaction with care and decision-making and items that received the lowest satisfaction scores. It is of paramount importance that when patients are cared for in ICU at the end of life, family members needs are identified and measures are taken to meet those needs, particularly for the most dissatisfied family members.
Development and evaluation of an educational video for advance care planning among Chinese university students.
Zhou Q, Mu S, Xu F … +1 more , Zhang J
BMC Palliat Care · 2026 Apr · PMID 42057065 · Full text
PURPOSE: To develop a culturally appropriate an educational video for advance care planning (ACP) in China based on the Delphi-constructed training content for college students with regards to ACP and to investigate the...
PURPOSE: To develop a culturally appropriate an educational video for advance care planning (ACP) in China based on the Delphi-constructed training content for college students with regards to ACP and to investigate the efficacy of its application among college students. DESIGN: A two-round Delphi consultation survey was carried out to collect feedback from experts with regards to the construction of a training content indicator system for ACP and college students. In addition, we performed a quasi-experimental study to investigate the effect of these videos on college students. METHODS: Training content was preliminarily determined by performing a literature review and assessing the needs of college students via a questionnaire survey. The Delphi technique was adopted to administer two questionnaires to 18 experts. Between June 2024 and July 2024, a total of 80 college students were recruited from two universities in Chongqing Municipality; these were grouped in the order of enrollment, with 40 students in each group. One group was trained online using the newly developed ACP educational video. The other group was trained offline through regular lectures. Before and after training, we used a questionnaire to compare the two student groups in terms of their readiness for ACP and knowledge score training efficacy. RESULTS: The recovery rate of information from the two rounds was 100% and 94% respectively; the expert authority coefficients were 0.87 and 0.88 respectively, and the Kendall harmony coefficient was 0.201 and 0.220 respectively. The training content relating to ACP included four first-level indicators, nine second-level indicators and 27 third-level indices. The ACP education video featured six major themes and was developed based on the Delphi. Before training, the total ACP readiness scores for the video group and the control group were 86.15 ± 7.41 and 86.23 ± 10.70, respectively. After training, the total ACP readiness scores for the video group and the control group were 96.69 ± 10.34 and 91.82 ± 8.61, respectively. The total ACP readiness score for the video group was significantly higher than that of the control group (p < 0.05). The difference in the percentage of correctness for each entry of ACP knowledge between the two groups before and after training was statistically significant (p < 0.05). The scores for each entry in the video group were significantly higher than those of the control group after training (p < 0.05) for four entries: the content of ACP, the nature of living wills, the timing of activation of living wills, and the choice of decision-making agent. CONCLUSION: The ACP educational videos developed in this study are culturally appropriate to China, comprehensive and scientifically based, and may provide key reference guidelines for the training of college students.
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