BMC Palliative Care[JOURNAL]
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200 papers
Palliative care preparedness among undergraduate nursing students in Northern Saudi Arabia: a cross-sectional study of Knowledge, Attitudes, and Spiritual Care.
Baqeas MH, Mersal FA, Alenezi IN … +2 more , Alanazi FK, Elbilgahy AA
BMC Palliat Care · 2026 Jun · PMID 42316389 · Full text
BACKGROUND: Palliative care is a core component of holistic nursing practice, yet international and regional evidence indicates persistent gaps in nursing students' preparedness, particularly in knowledge, attitudes, and...
BACKGROUND: Palliative care is a core component of holistic nursing practice, yet international and regional evidence indicates persistent gaps in nursing students' preparedness, particularly in knowledge, attitudes, and spiritual care competence. In Saudi Arabia, these gaps are influenced by cultural expectations and variable curricular integration. OBJECTIVE: To assess palliative care preparedness among undergraduate nursing students in Northern Saudi Arabia across three domains knowledge, attitudes toward caring for the dying, and spiritual care preparedness and to examine their associations with palliative care training and clinical experience. METHODS: A cross-sectional study was conducted among 232 third- and fourth-year nursing students using stratified random sampling. Data were collected using the Palliative Care Knowledge Test (PCKT), the Frommelt Attitude Toward Care of the Dying Scale-B (FATCOD-B), and the Student Survey of Spiritual Care (SSSC). Descriptive statistics, Mann-Whitney U tests, Pearson correlations, and multiple linear regression were performed. RESULTS: Students demonstrated moderate knowledge (M = 13.78/20), with higher scores in psychiatric and dyspnea management domains. Clinical experience with dying patients was associated with significantly higher knowledge (p = 0.0189). Attitude scores were generally positive (M = 3.13/5), though slightly lower among students with training or clinical experience. Spiritual care preparedness was moderate (M = 3.86/6) and did not differ by training or experience. A weak negative correlation was observed between knowledge and attitudes (r = - 0.143, p = 0.0296). CONCLUSION: Nursing students in Northern Saudi Arabia exhibit moderate preparedness for palliative care. Clinical exposure enhances knowledge, while spiritual care readiness appears culturally grounded rather than training dependent. Findings highlight the need for integrated, culturally responsive palliative and spiritual care education within undergraduate nursing curricula.
Healthcare professionals' conceptualizations of palliative care and readiness for early integration: a cross‑sectional mixed‑methods survey in Finland.
Åström E, Saaranen E, Andersén H … +2 more , Johansson M, Nåhls NS
BMC Palliat Care · 2026 Jun · PMID 42304384 · Full text
BACKGROUND: Early integration of palliative care for patients with advanced cancer is recommended by major organizations and guidelines, yet palliative care is often still perceived as end-of-life care or as incompatible...
BACKGROUND: Early integration of palliative care for patients with advanced cancer is recommended by major organizations and guidelines, yet palliative care is often still perceived as end-of-life care or as incompatible with active oncological treatment. Such misconceptions may delay timely integration. METHODS: We conducted a cross-sectional mixed-methods survey among healthcare professionals in oncology services in Ostrobothnia, Finland. The survey included 15 Likert-scale statements (1-5) addressing perceived knowledge, values and role beliefs, and perceived capacity and support, plus one free-text question: "What is palliative care?". Likert responses were summarized descriptively and compared across demographic groups using non-parametric tests. Free-text responses were coded using a predefined framework of 25 themes derived from the WHO definition of palliative care and Finnish national quality recommendations, generating a binary concept-coverage score (0-25). Responses were also classified for an end-of-life/non-concurrent conceptualization ("non-concurrent framing"). Group differences in concept-coverage scores were tested using Mann-Whitney U. RESULTS: Ninety-six professionals completed the survey (response rate 88.1%); 95 responded to the free-text item. While participants strongly endorsed statements about palliative care benefits and values, endorsement was lower for perceived competence and lowest for resources and support. Nearly one-third of participants expressed a non-concurrent/end-of-life framing of palliative care in their free-text definition. Concept-coverage scores were significantly lower among participants with non-concurrent framing compared with those without, particularly framework categories related to practical factors and system-level drivers. CONCLUSION: The open-ended responses indicated variability in the conceptualization of palliative care, including descriptions consistent with an end-of-life or non-concurrent view. This pattern identifies a potential target for education and implementation aligned with national guidance and quality recommendations.
LiverCare - a palliative care intervention for patients with liver cirrhosis: study protocol for a multi-center, pragmatic, non-randomised clinical trial.
O'Connell MB, Jacobsen BG, Teisner AS … +8 more , Bager P, Hamberg ML, Mendahl J, Marsaa K, Guldin MB, Kimer N, Lauridsen MM, Ladegaard L
BMC Palliat Care · 2026 Jun · PMID 42304310 · Full text
BACKGROUND: In the transition from compensated to decompensated cirrhosis, median survival decreases from 12 to two years, and patients face some of the highest rates of unplanned hospital admissions. Despite existing re...
BACKGROUND: In the transition from compensated to decompensated cirrhosis, median survival decreases from 12 to two years, and patients face some of the highest rates of unplanned hospital admissions. Despite existing recommendations, palliative care is not routinely offered to this population. The aim of this study is to evaluate the effectiveness and implementation of an interdisciplinary palliative care intervention for patients with cirrhosis and their informal caregivers. METHODS: The LiverCare study is a multi-center, mixed-method, pragmatic, non-randomised clinical study with a hybrid type 1 effectiveness-implementation design. The study is conducted in hepatology departments across four hospitals in three of Denmark's five regions. It is guided by the British Medical Research Council and Reach, Effectiveness, Adaption, Implementation, Monitor frameworks and includes both a feasibility study and a mixed-method process evaluation. The LiverCare intervention is grounded in a palliative approach, emphasising open, exploratory palliative care conversations. The intervention is integrated into routine outpatient care and the palliative care conversations are delivered by hepatologists and liver nurses who attended a specially designed course within palliative care. Eligible participants are adults with decompensated liver cirrhosis of any etiology who meet at least one general and one disease-specific palliative care indicator, assessed using the Supportive and Palliative Care Indicators Tool. Informal caregivers are invited to participate in the intervention. Palliative care conversations are initiated following a formal invitation and continue after four to ten weeks and then every six months up to 36 months or until study withdrawal or death. The primary outcome is healthcare utilization, defined as the number and length of hospital admissions, compared to a historic cohort. Secondary outcomes include outpatient contacts, symptom burden, quality of life, and caregiver burden. The study also includes cost-effectiveness and cost-utility analysis. DISCUSSION: Insights gained from the study will inform future implementation strategies and contribute to the advancement of palliative care practices in hepatology. The results will further support education, training, and competence development for healthcare professionals caring for patients with advanced liver disease. TRIAL REGISTRATION: The study is registered on clinicaltrials.gov (NCT05431946), approved by The Danish Data Protection Agency and reported to the Committee on Health Research Ethics (20222000-31).
The impact of opioid stigma on patient-provider interaction and decision-making in cancer pain management: a qualitative meta-synthesis.
Chen YX, Yu R, Xu M … +3 more , Zhou Y, He WY, Zhang XL
BMC Palliat Care · 2026 Jun · PMID 42304202 · Full text
CONTEXT: Clinical guidelines recommend opioids for moderate-to-severe cancer pain, yet undertreatment remains common. In the context of the opioid crisis and increasingly restrictive regulatory policies, communication an...
CONTEXT: Clinical guidelines recommend opioids for moderate-to-severe cancer pain, yet undertreatment remains common. In the context of the opioid crisis and increasingly restrictive regulatory policies, communication and decision-making around cancer pain management have become more challenging. Opioid stigma may be an overlooked influence on how patients and healthcare providers communicate and make treatment decisions. OBJECTIVES: To explore how opioid stigma influences patient-provider interaction and decision-making through a qualitative meta-synthesis. METHODS: This qualitative meta-synthesis followed PRISMA and ENTREQ and was registered in PROSPERO (CRD420261329320). We searched PubMed, CINAHL, Embase, PsycINFO, Web of Science, the Cochrane Library, WanFang, and CNKI from database inception to 1 March 2026. We included qualitative studies examining stigma, interaction, and decision-making in cancer pain management. Findings were synthesized using thematic synthesis, and confidence was assessed using CERQual. RESULTS: Twenty studies were included. Most had moderate methodological limitations, particularly in reflexivity and positionality. A total of 145 findings were extracted and grouped into 10 descriptive categories and 4 analytical themes. Opioid stigma was shaped by sociocultural narratives and institutional processes. Patients internalized this stigma as shame and fear, which could reduce pain expression and help-seeking. Clinicians faced tension between adequate analgesia and risk management, contributing to conservative prescribing. In clinical encounters, patients often felt compelled to justify the legitimacy of their pain, whereas clinicians responded defensively to perceived risks. CONCLUSIONS: Opioid stigma shapes patient-provider interaction and decision-making in cancer pain management and may reinforce undertreatment. Multilevel efforts to reduce stigma may improve communication, support shared decision-making, and promote more appropriate opioid-related decision-making in cancer pain management.
Dying as a 'normal', 'ordinary' or 'natural' process in palliative care: a systematic scoping review and narrative synthesis.
Yu HW, Manyimo P, MacArtney JI
BMC Palliat Care · 2026 Jun · PMID 42298560 · Full text
BACKGROUND: The World Health Organization definition of palliative care describes dying as a 'normal' process and it, along with related ideas of 'ordinary' or 'natural' dying, is important in understanding what a 'good'...
BACKGROUND: The World Health Organization definition of palliative care describes dying as a 'normal' process and it, along with related ideas of 'ordinary' or 'natural' dying, is important in understanding what a 'good' death is. This scoping review aims to explore how dying has been described as 'normal', 'ordinary' or 'natural' in empirical palliative care literature to provide palliative care stakeholders with evidence-based insights into how this concept may enable quality dying experiences and a 'good' death. METHODS: A scoping review was conducted by searching six online databases (Medline (via Ovid), Embase (via Ovid), PsycINFO (via Ovid), CINAHL (via EBSCO), Web of Science, and Scopus) for empirical English-language palliative care literature that explicitly described dying as 'normal', 'ordinary', 'natural', or their interchangeable terms 'standard, 'typical' or 'usual'. A narrative synthesis was used to present the clusters of features associated with their descriptions. RESULTS: Twenty-one studies used 'normal', 'ordinary', 'natural' and 'typical' dying. They were often employed as a single statement despite some authors' concerns regarding the lack of conceptual clarity. Interchangeability between 'normal' and 'natural' dying was observed. Understandings of 'normal', 'natural' and 'typical' were found to be diverse, subjective, and contextually bounded. Although there was some evidence that 'normal', 'natural' and 'typical' dying can influence the quality of dying experiences in palliative care, there was no evidence for 'ordinary' dying due to a lack of explicit use in the included studies. CONCLUSIONS: Understandings of dying as 'normal', 'natural' or 'typical' are held by clinicians and patients to play an important role in shaping the quality of dying experiences and providing a 'good' death in palliative care. However, the use of each idea remains heterogeneous, with conflicting definitions across terms. The diffuse evidence base suggests that the potential benefits, harms or limitations of their use in palliative care are therefore unclear. For this reason, we recommend caution regarding their use in practice or policy.
FuturePall: Forecasting the specialized inpatient palliative care in Germany based on demographic trends and utilization rates.
Kamp MA, Bergmann J, von Saß C … +4 more , Fink L, Adelstein J, Muehlensiepen F, van Oorschot B
BMC Palliat Care · 2026 Jun · PMID 42289685 · Full text
INTRODUCTION: Demographic aging poses a significant challenge for specialized inpatient palliative care (SIPC). In the German healthcare system, SIPC is defined as hospital-based multi-professional care delivered through...
INTRODUCTION: Demographic aging poses a significant challenge for specialized inpatient palliative care (SIPC). In the German healthcare system, SIPC is defined as hospital-based multi-professional care delivered through dedicated palliative units, consultation services, or complex care on general wards. To inform future resource allocation, this study predicts the demand for SIPC in Germany up to 2035, specifically examining the impact of shifting population structures on hospital-based palliative service utilization. METHODS: We analyzed baseline utilization data from the 2021 Trinovis Database, which aggregates mandatory structural and performance reports from German hospitals submitted to the Federal Joint Committee (G-BA). Specialized inpatient palliative care (SIPC) was defined using specific Operation and Procedure (OPS) codes. By applying these age-, gender-, and region-specific utilization rates to population projections provided by the German Federal Statistical Office, we forecasted the annual demand for SIPC from the 2021 baseline through the target year of 2035. RESULTS: Germany's adult population is expected to decline slightly by 2035, but the proportion of individuals aged 65 years and older will increase. SIPC cases are projected to rise from 108,645 in 2021 to 119,923 by 2035, reflecting a growth rate of 0.7% annually. The proportion of SIPC cases involving patients aged 65 years and older will increase. Regional disparities will persist, with varying growth rates in different federal states. CONCLUSION: The "FuturePall" study forecasts a rising demand for SIPC in Germany due to demographic shifts, particularly among older adults. Policymakers must plan for these changes by allocating resources, enhancing infrastructure, and adapting healthcare strategies to meet the evolving needs of an aging population. Future research should explore the impact of non-demographic factors on SIPC demand.
Understanding pain in malignant mesothelioma: a prospective, longitudinal cohort study.
Mayland CR, Collinson M, Ahmedzai SH … +10 more , Lucas J, Gath J, Darlison L, Defonseka D, Laird B, Stanley H, Danson S, Gardiner C, Bibby AC, ASSESS-meso collaborative
BMC Palliat Care · 2026 Jun · PMID 42288902 · Full text
BACKGROUND: Pain associated with malignant mesothelioma can be complex. The natural course of pain over the disease trajectory is not well studied. The aim of this study was to explore the prevalence, severity, impact an...
BACKGROUND: Pain associated with malignant mesothelioma can be complex. The natural course of pain over the disease trajectory is not well studied. The aim of this study was to explore the prevalence, severity, impact and clinical course of pain for people with mesothelioma over a 12-month period. METHODS: A prospective observational study was conducted as a component of a larger national, multi-centre cohort study on mesothelioma - ASSESS-meso (A prospective obServational cohort Study collecting data on dEmographics, Symptoms and biomarkerS in people with mesothelioma) (ISRCTN: 61,861,764). Adults (> = 18 years) newly diagnosed with mesothelioma were recruited from out-patient clinics in 20 hospitals. Baseline demographic and clinical data were recorded. Frequency, severity and impact of pain, quality of life and mood were collected using Patient-Reported Outcome Measures (e.g., EORTC Quality of Life Questionnaire Core Questionnaire PALliative Cancer [QLQ-C15-PAL], Brief Pain Inventory [BPI]). Follow-up occurred 3-monthly for 12-months. RESULTS: Among the 150 participants recruited, mean age was 72.4 years (SD 8.1), with 112 (74.7%) being men. Baseline assessments showed a greater proportion of participants were affected by dyspnoea compared with pain. Overall, twenty-one (14.0%) participants reported moderate or severe chest pain (defined as > = 40/100) although none were receiving strong opioids. Median pain duration was 14.1 weeks (IQR 10-24.1). At 9-12 months, quality of life was poorer in those reporting moderate or severe pain (mean overall QLQ-C15-PAL score 41.7 [SD = 20.4] vs. 71.6 [SD = 19.5]) and this pain interfered more with daily activities (mean BPI interference index, 29.1 [SD = 19.1] vs. 14.4 [SD = 14.5]). Sixty-six (44.0%) participants died during the 12-months follow-up period. CONCLUSIONS: Participants reporting moderate or severe chest pain experienced poorer quality of life and none were receiving strong opioids. Given the limited prognosis, early identification of 'high risk' mesothelioma patients i.e. those who are most likely to have high symptom burden and poor prognosis, would help ensure timely input is given to implement pain management strategies. This includes Specialist Palliative Care guidance about opioid prescribing and interventional procedures. Future research should be directed towards the optimum ways to assess and improve breathlessness, without neglecting the smaller group of people who experience severe pain.
A study on the role of palliative care in the physical and psychological well-being of people with life-limiting illnesses in Kashmir, India.
Wani SQ, Matia M, Jayaprakasan AK … +9 more , Sofi MA, Khan T, Parvaiz M, Ayub M, Farooq U, Wani T, Najar SA, Rana S, Sharma P
BMC Palliat Care · 2026 Jun · PMID 42277812 · Full text
BACKGROUND: Living with life-limiting illnesses (LLIs) is psychologically distressing, even more so in areas with a complicated terrain and which are conflict-prone, where insecurity, displacement, and limited healthcare...
BACKGROUND: Living with life-limiting illnesses (LLIs) is psychologically distressing, even more so in areas with a complicated terrain and which are conflict-prone, where insecurity, displacement, and limited healthcare access adds to the burden. In this study, we assessed the impact of palliative care on the psychological well-being of people with life-limiting illnesses in Jammu & Kashmir, a conflict-prone region in India. METHODS: This retrospective study analyzed the records of patients with LLIs visiting a pain and palliative care clinic in Srinagar, Jammu & Kashmir, from November 2023 to March 2025. The impact of palliative care on their well-being was assessed twice using the Edmonton Symptom Assessment Scale (ESAS), one week apart, the socioeconomic and disease-related factors associated with a change in scores were also identified. Data were analyzed using Rv4.4.2. RESULTS: Of the 881 patients included in the analysis, the mean age was 57.6 ± 15.2 years, with almost an equal number above and below 60 years. Males constituted 59.6% of the population. A majority (73.4%) were from Below Poverty Line (BPL) households. Sons were the primary caregivers in 52.5% of the cases, and most (73.2%) of the caregivers were males. The primary diagnosis in almost all (97.6%) was cancer. Statistically significant differences were noted: median pain scores reduced from 7 to 2 (p < 0.001) and total scores reduced from 29 to 20 (p < 0.001) between initial assessment and at follow-up after registration at the palliative care unit. There was no significant difference in median score across age groups, gender and BPL category. CONCLUSION: Our study population primarily consisted of patients with malignancies. There was a significant difference in pain score, well-being score, and total ESAS score on follow-up assessment after 1 week of receiving palliative care. No significant difference was seen based on age, gender, socioeconomic status, or diagnosis, highlighting the universal impact of palliative care in people with LLIs.
Communication practices and experience of connection in telehealth serious illness conversations with rural cancer patients: a qualitative study.
Tarbi EC, Medeiros S, Haque A … +4 more , Verma S, Ambati A, Gramling R, Reblin M
BMC Palliat Care · 2026 Jun · PMID 42277790 · Full text
BACKGROUND: Telehealth can overcome functional, cost, and geographic barriers to attending in-person visits for people living with cancer in rural areas. Yet this medium presents clinicians, patients, and families with a...
BACKGROUND: Telehealth can overcome functional, cost, and geographic barriers to attending in-person visits for people living with cancer in rural areas. Yet this medium presents clinicians, patients, and families with a different sensory and relational environment within which to engage in serious illness conversations. Within this different context, there is a need to better understand how clinicians preserve or adapt their communication strategies to connect interpersonally with patients and ensure high-quality care. AIM: We explored the characteristics of telehealth communication that patients reported fostered human connection in serious illness conversations among rural-dwelling patients with cancer. METHODS: Grounded in a Basic Science Framework for Serious Illness Communication Research, we conducted semi-structured interviews with adult rural-dwelling patients with cancer. Eligible participants were either currently receiving or had recently completed treatment for their cancer and received some part of their cancer care via teleconferencing. Using directed content analysis, we qualitatively described participants' experiences with telehealth encounters with their providers (i.e., oncology or palliative care clinicians). We followed the consolidated criteria for reporting qualitative research (COREQ) for rigorous data collection, analysis, and reporting. RESULTS: We interviewed 20 participants (average duration = 29 min; range: 14-56 min). Mean age was 66 years and 60% were women. All participants identified as white and 85% identified as financially secure. Over half reported high digital health care literacy, including 65% (13/20) reporting ability to use electronic device software applications (e.g. Zoom) independently. We identified three major themes in interviews: (1) the accessibility, comfort, and convenience of telehealth contributes to patient experience of connection; (2) communication actions that enable connection in this setting are those that foster a sense of patients feeling seen as a person, and allow them to see their clinicians as humans as well; (3) patients' experience of connection is impacted by relational, situational, and technological factors. CONCLUSIONS: Accessibility, clinician communication actions, and contextual factors of telehealth affect the experience of human connection in their cancer care among people with cancer who live in rural areas. This study provides a foundation to drive future research uncovering the optimal telehealth communication strategies to promote connection during virtual serious illness conversations.
The impact of municipal healthcare setting on the quality of end-of-life care: a population-based cohort study.
Dalhammar K, Schelin MEC, Möllerberg ML
BMC Palliat Care · 2026 Jun · PMID 42271378 · Full text
BACKGROUND: In Sweden, approximately half of all individuals who die receive municipal care prior to death. Access to high-quality palliative care remains unequal, with known disparities between both care settings and di...
BACKGROUND: In Sweden, approximately half of all individuals who die receive municipal care prior to death. Access to high-quality palliative care remains unequal, with known disparities between both care settings and diagnostic groups. Individuals receiving municipal home care are at higher risk of acute hospital admissions and in hospital death than those in long-term care facilities. However, the impact of municipal care setting on the quality of end-of-life care is largely unknown. The aim of this study was to describe the impact of care setting on the quality of end-of-life care among patients receiving municipal healthcare services. METHOD: This population-based cohort study included all individuals reported during 2023-2024 in the Swedish Register for Palliative Care as recipients municipal palliative care during the last week of life (n = 50,219). Associations between care setting (ordinary housing, and long- and short-term care facilities) and end-of-life quality indicators were analyzed using modified Poisson regression to estimate risk ratios (RR) with 95% confidence intervals. Analyses were adjusted for age, sex, and cause of death. RESULTS: Compared to individuals receiving care in ordinary housing, those in long- and short-term care were more likely to receive symptom assessments ([RR; 95% CI] 1.14; 1.09-1.19 vs. 1.08; 1.03-1.13). However, they were less likely to receive end-of-life information ([RR; 95% CI] 0.92; 0.91-0.94 vs. 0.98; 0.97-0.99), bereavement support for relatives ([RR; 95% CI] 0.98; 0.97-0.99 vs. 0.95; 0.94-0.96), and external pain consultations ([RR; 95% CI] 0.52; 0.49-0.57 vs. 0.81; 0.76-0.88). CONCLUSIONS: Care setting influences the quality of municipal end-of-life care. Strengths and weaknesses vary across settings, highlighting the need for targeted quality improvement efforts.
Supportive care needs and quality of life in caregivers of cancer patients receiving home-based palliative care: a serial mediation model.
Metin T, Uğur Ö, Kurtoğlu Y … +2 more , Özer Ş, Budak S
BMC Palliat Care · 2026 Jun · PMID 42271372 · Full text
BACKGROUND: Family caregivers of cancer patients receiving home-based palliative care often experience growing responsibilities. Nonetheless, research remains scarce on the extent to which patients' clinical status is as...
BACKGROUND: Family caregivers of cancer patients receiving home-based palliative care often experience growing responsibilities. Nonetheless, research remains scarce on the extent to which patients' clinical status is associated with caregivers' unmet needs and quality of life, particularly in terms of the interaction between patients and caregivers. OBJECTIVE: This study aimed to examine the relationships of cancer patients' unmet supportive care needs and symptom burden with caregivers' quality of life and their own unmet supportive care needs through a multiple mediation model. METHODS: This cross-sectional study comprised 124 cancer patients and 124 caregivers registered with a home-based palliative care unit. To explore the mediating roles of patients' unmet care needs and symptom burden, serial mediation analysis was performed using the PROCESS Macro (Model 6). RESULTS: Caregivers reported considerable supportive care needs (mean = 2.94, SD = 0.80) and a moderate level of quality of life (mean = 70.72, SD = 19.02). A significant serial mediation pathway emerged, indicating that patients' unmet needs and symptom burden jointly mediated the relationship between caregivers' quality of life and supportive care needs (Total indirect effect = - 0.01; 95% CI: - 0.02 to - 0.01). CONCLUSIONS: The findings suggest that the challenges experienced by patients and caregivers during the care process may reflect mutual interaction within an interdependent care system in home-based palliative care.
Awareness and misconceptions of palliative care among paid, unpaid, and non-caregivers in the U.S.
Xie Z, Hong YR, Liang J … +4 more , Akter J, Hu J, Fisher C, Wilkie D
BMC Palliat Care · 2026 Jun · PMID 42271366 · Full text
INTRODUCTION: Palliative care improves quality of life for individuals with serious illnesses; however, misconceptions about it remain widespread. Caregivers, both paid professionals and unpaid family members, serve as c...
INTRODUCTION: Palliative care improves quality of life for individuals with serious illnesses; however, misconceptions about it remain widespread. Caregivers, both paid professionals and unpaid family members, serve as critical intermediaries in healthcare decision-making for these patients. Little is known about differences in understanding of palliative care among non-caregivers, paid caregivers, and unpaid informal caregivers. METHODS: We analyzed nationally representative data from the 2024 Health Information National Trends Survey. Survey design-adjusted Chi-square tests and multivariable logistic regression models were used to compare palliative care awareness and misconceptions across groups with different caregiving experiences. RESULTS: A total of 5,835 respondents (representing 217,985,076 U.S. adults) were included in the final analysis. Overall, 45.3% of non-caregivers, 55.9% of paid caregivers, and 61.9% of unpaid caregivers (p < .001) reported palliative care awareness. Awareness was highest among caregivers who cared for parents only (65.7%) or for patients with cancer (76.3%). In adjusted analyses, both paid (aOR, 2.88; 95% CI, 1.56-5.33) and unpaid (aOR, 2.34; 95% CI, 1.68-3.27) caregivers had significantly higher odds of awareness compared with non-caregivers. Among those aware of palliative care, paid caregivers were most likely to hold the misconception that palliative care requires stopping other treatments (48.3% vs. 20.8% unpaid vs. 20.1% non-caregivers; p = .041). CONCLUSIONS: Caregivers exhibit significantly greater palliative care awareness than non-caregivers, though paid caregivers report more misconceptions. Awareness also varies by caregiving relationship and disease type. These findings underscore the need for targeted educational strategies to enhance accurate understanding of palliative care across caregiving groups.
Bereaved informal caregivers' experiences with a Canadian home hospice program: a qualitative study.
Li M, Banner D, Agboji A … +3 more , Klinger CA, Flood D, Freeman S
BMC Palliat Care · 2026 Jun · PMID 42271311 · Full text
BACKGROUND: Most individuals wish to die at home, yet in Canada this is not always possible. Informal caregivers play a vital role to support individuals who wish to receive home-based end-of-life care and die at their o...
BACKGROUND: Most individuals wish to die at home, yet in Canada this is not always possible. Informal caregivers play a vital role to support individuals who wish to receive home-based end-of-life care and die at their own homes. Community-based home hospice programs aim to support both individuals at the end of life and their informal caregivers, however, informal caregivers' experiences within such programs, particularly in northern communities, remain underexplored. This study aimed to describe the experiences of bereaved informal caregivers who received support from a community-based home hospice program. METHODS: A qualitative approached was used. Semi-structured interviews were conducted with bereaved informal caregivers (N = 15) approximately three months following the death of their care recipient. All participants had been involved as informal caregivers as part of a home hospice program in a geographically isolated, medium sized northern city in Western Canada. Interviews explored their experiences of the program, including perceived benefits and challenges. Data was analyzed using thematic analysis following Braun & Clarke's approach. RESULTS: Participants described both emotional and practical benefits of home hospice, as well as challenges related to timing of referral and aspects of service delivery. Five themes were identified that captured informal caregivers' experiences with the home hospice program: a preference for home-based end-of-life care, the ability to fulfill the wishes of the person they cared for, relief associated with receiving hospice support, the importance of compassionate relationships with hospice staff, and the perceived need for early awareness and referrals to home hospice services. CONCLUSIONS: Bereaved informal caregivers valued home hospice support for enabling home-based end-of-life care, honoring the wishes of the person they cared for, and reducing caregiver burden through compassionate and holistic support. Improving early awareness and timely referral to home hospice programs may further improve caregiver experiences and strengthen the delivery of home hospice services in Canadian northern communities.
Referral and utilization patterns for home-based palliative care services among older adults.
Chung J, Langlois A, Burger T … +1 more , Chin DL
BMC Palliat Care · 2026 Jun · PMID 42271302 · Full text
BACKGROUND: Home-based palliative care (HPC) improves quality of life for individuals with serious illness but remains underutilized in the United States, with persistent disparities in access. HPC is also frequently mis...
BACKGROUND: Home-based palliative care (HPC) improves quality of life for individuals with serious illness but remains underutilized in the United States, with persistent disparities in access. HPC is also frequently misconceived as appropriate only at the end of life. AIM: This study examined disparities in access to HPC by comparing patients who received services with those who were referred but not enrolled. METHODS: A secondary analysis was conducted using 567 clinical records from a healthcare facility in the eastern United States between 2022 and 2023. Descriptive statistics, chi-square tests, and Cox proportional hazards regression model were used to compare demographic and clinical characteristics between groups. RESULTS: No significant differences were observed by gender or race between patients who received HPC and those who did not. Significant differences were found for age (t = 2.33, p = 0.02), insurance type (p < 0.001), and referral source (p = 0.02). Patients who received HPC were more likely to be older, female, insured through Medicare Part B, and referred from larger hospitals. CONCLUSION: These findings underscore ongoing structural disparities in access to home-based palliative care and highlight the need for targeted strategies to improve equitable access to HPC services.
Key practical aspects of perinatal palliative care: a scoping review mapping and grading their coverage in the literature.
Doucet B, Silberberg A, Martín-Ancel A … +3 more , Grimaux G, Moure J, Balaguer A
BMC Palliat Care · 2026 Jun · PMID 42265743 · Full text
BACKGROUND: Despite growing recognition of the importance of perinatal palliative care (PnPC) as a comprehensive approach to supporting seriously ill fetuses or neonates and their families, its implementation in clinical...
BACKGROUND: Despite growing recognition of the importance of perinatal palliative care (PnPC) as a comprehensive approach to supporting seriously ill fetuses or neonates and their families, its implementation in clinical practice remains nascent and heterogeneous. A synthesis of the literature may clarify which aspects are being addressed and how they are operationalized. We aimed to map how the key practical aspects (KPAs) of PnPC are reported in the literature and to assess the level of detail with which they are described. METHODS: We conducted a scoping review of PubMed in May 2025. We included articles that described, analyzed, or conceptualized practical aspects of PnPC programs or dedicated units. Following independent screening, 137 articles were included. We developed a KPA coding framework informed by landmark publications and guideline documents, and rated the depth of coverage for each KPA as 0 (not mentioned), 1 (mentioned), or 2 (discussed). RESULTS: The proposed KPA coding framework comprised 42 items across seven domains. The most frequently mentioned KPAs included the composition and competencies of the interdisciplinary core team (80% of included articles), patient- and family-centered care, and support for memory-making practices. However, substantial variability was observed in the depth of coverage across KPAs. Patient- and family-centered care and shared decision-making were the most consistently discussed in depth (≥ 25% of articles). In contrast, internal organizational processes-including emotional support for healthcare professionals (14%), continuous quality-improvement systems (14%), and release from other clinical responsibilities during the dying process (1%)-were infrequently reported and rarely examined analytically. The role of the extended interdisciplinary team was discussed with limited depth compared with that of the core team. CONCLUSIONS: The PnPC literature appears more developed in relational and family-centered approaches and in defining the interdisciplinary core team. However, the formalization of organizational processes, structured support for healthcare professionals, and system-level consolidation remain limited. These findings suggest that current priorities should focus less on identifying new care components and more on organizing already recognized elements into standardized, evaluable structures, including internal coordination processes, team support mechanisms, and the systematic integration of psychological, social, and spiritual dimensions of care.
Feasibility and acceptability of a rural palliative care intervention for patients with heart failure (RuPAL-HF).
Piccolo FX, Anderson EC, Gutow H … +4 more , Johnson CM, Nevers MD, DeSanto-Madeya S, Hutchinson RN
BMC Palliat Care · 2026 Jun · PMID 42265697 · Full text
BACKGROUND: People with heart failure (HF) have unmet palliative care (PC) needs, particularly in rural areas. Collaborative care models may meet these needs by connecting primary care teams with urban palliative care sp...
BACKGROUND: People with heart failure (HF) have unmet palliative care (PC) needs, particularly in rural areas. Collaborative care models may meet these needs by connecting primary care teams with urban palliative care specialists. We aimed to evaluate the feasibility and acceptability of the Rural Palliative Care for Patients with Heart Failure (RuPAL-HF) intervention. METHODS: We recruited patients with HF from a rural Maine primary care clinic. A complex care team embedded in primary care was trained in PC. Specialty PC clinicians supported the team through weekly collaborative care meetings, providing coaching and case-specific guidance. Specialty palliative care clinicians also provided tele-PC when needed. Feasibility was assessed via recruitment, referral-to-completion rates, completion of advance care planning and surveys as well as collaborative care meeting attendance. Acceptability was assessed using qualitative methods through semi-structured interviews with patients, clinicians, and complex care team members. RESULTS: The intervention was feasible and acceptable to patients, clinicians, and complex care team members. 31 patients were approached, 13 enrolled, and 12 (92.3%) completed all intervention components. All patients completed a serious illness conversation with the complex care team and 11 (84.6%) with the specialty PC physician. 12 patients (92.3%) completed an advance directive and 8 (61.5%) a Portable Medical Orders Form. Patients reported that goals-of-care conversations were not overly emotionally challenging, and they valued the telehealth option. All care team members attended trainings, completed surveys, and participated in ≥90% of collaborative care meetings. Complex care team members reported increased confidence and skills after trainings. CONCLUSION: The RuPAL-HF intervention was feasible and acceptable for patients, clinicians, and complex care team members. Telehealth appeared feasible as a mechanism to support access to specialty PC. Further research is needed to evaluate this intervention in other rural sites, care teams, and health conditions.
Content, timing, participants and documented outcomes of family meetings in a specialist palliative care unit in Portugal: a retrospective descriptive study.
Fragoeiro H, Rego F, Nunes R
BMC Palliat Care · 2026 Jun · PMID 42265696 · Full text
BACKGROUND: Family meetings are a core communication strategy in palliative care, but their content in routine clinical practice remains insufficiently described. This study aimed to characterize the timing, participants...
BACKGROUND: Family meetings are a core communication strategy in palliative care, but their content in routine clinical practice remains insufficiently described. This study aimed to characterize the timing, participants, goals, problems identified, and decisions reached in family meetings conducted in a specialist palliative care unit. METHODS: We conducted a retrospective descriptive study of all formally documented family meetings held in a certified palliative care unit in Portugal between October 2012 and December 2019. Data were extracted from standardized meeting records and electronic health records. Variables included patient characteristics, Palliative Performance Scale scores, meeting timing, participants, goals, problems identified, and final decisions. Free-text entries were thematically recoded when needed. Descriptive statistics were used. RESULTS: A total of 272 formally documented family meeting records were analysed. The unit of analysis was the meeting record. Physicians attended 99.3% of meetings, nurses 65.4%, social workers 45.2%, psychologists 23.5%, and patients 11.4%. The median time from admission to meeting was 9 days, and the median time from meeting to death was 13 days. Median Palliative Performance Scale score declined from 40% at admission to 30% at the meeting. Discharge after the meeting occurred in 84 records (30.9%). Common goals included clarifying expectations, building rapport, and discussing therapeutic options. Frequently identified problems concerned prognosis, symptoms, adequacy of clinical information, end-of-life issues, and discharge planning. Common decisions related to psychological or social support, discharge planning, comfort-focused care, and symptom management. CONCLUSIONS: Family meetings provided a structured forum for communication, problem identification, and care planning across clinical and psychosocial domains. Their late timing and low patient participation suggest that earlier implementation and broader interdisciplinary involvement may strengthen patient- and family-centred care.
Navigating existential conversations about life and death with families in paediatric palliative care: a qualitative interview study with healthcare professionals.
Hjorth E, Melin-Johansson C, Holmberg B … +5 more , Godskesen T, Hagelin CL, Ozanne A, Lagerin A, Udo C
BMC Palliat Care · 2026 Jun · PMID 42265681 · Full text
BACKGROUND: When a child has a life-threatening illness, guidelines emphasise the importance of providing holistic support to the whole family. Conversations about existential issues are essential in this support, yet st...
BACKGROUND: When a child has a life-threatening illness, guidelines emphasise the importance of providing holistic support to the whole family. Conversations about existential issues are essential in this support, yet staff often lack formal training in communication, particularly when addressing such issues as life and death. This qualitative study explored how paediatric healthcare professionals in Sweden experience and approachconversations about existential issues with children and their families facing life-threatening illness. METHODS: Eight professionals representing different disciplines and paediatric palliative care settings took part in individual interviews, analysed using an interpretative description approach. RESULTS: The results show that healthcare professionals experienced the existential conversations with families as emotionally intense, ethically complex, yet meaningful. A balance between courage, presence, sensitivity, and professional boundaries was crucial, as well as the need for collegial support. The importance of honest communication and age-appropriate ways of talking about illness and death was emphasized. They stressed that communication should be empathetic and culturally sensitive, without ready-made solutions, and based on the unique needs of the family. They also described organizational factors that influenced their ability to engage in existential conversations with the families. CONCLUSIONS: Maintaining an open approach to existential conversations is essential to how these dialogues are carried out. Such an approach includes creating workplaces with an organizational culture that encourages existential conversations with patients and families. The importance of both personal and professional development is also emphasized, where collegial support and structures that promote professional growth, such as supervision and debriefing, strengthen the ability to address existential issues.
"Reconciling"- conceptualising the grieving process of family members involved in assisted dying: a grounded formal theory.
Bayuo J, Kyei Baffour P, Oduro EB … +1 more , Adedibu D
BMC Palliat Care · 2026 Jun · PMID 42260565 · Full text
BACKGROUND: The death of a loved one invariably triggers a complex constellation of profound emotional, psychological, and physical grief reactions. While theoretical frameworks for understanding the grieving process are...
BACKGROUND: The death of a loved one invariably triggers a complex constellation of profound emotional, psychological, and physical grief reactions. While theoretical frameworks for understanding the grieving process are well-established, the advent of assisted dying presents a novel and under-examined context for grief and bereavement. Thus, this study sought to generate a theory explaining the grieving process of family members involved in assisted dying. METHODS: A grounded formal theory approach was employed. Extensive systematic searches were undertaken across various four databases for eligible qualitative studies. Constant comparison was employed to iteratively refine emerging codes and categories. RESULTS: Fifteen (15) qualitative studies were retained. Reconciling, emerged as central to conceptualising the grieving process associated with assisted dying reflecting four interconnected categories: navigating ambivalence, anticipating, transitioning, and navigating the aftermath. This process is characterised as a complex, iterative, and often non-linear proactive journey of meaning-making, through which families strive to integrate the profound dichotomies. Reconciling, as a mid-range theory, extends existing grief models by demonstrating that bereavement in assisted dying involves a proactive, ethically charged negotiation of autonomy, suffering, and relational responsibility; dimensions not accounted for in stage-based or oscillation models. CONCLUSION: The grieving process in assisted dying is best understood as Reconciling, a dynamic, iterative negotiation of autonomy, suffering, love, and loss. Families move through ambivalence, anticipation, transition, and aftermath in ways that blend emotional complexity with profound meaning-making. This theory offers a transferable framework to understand and support families navigating this ethically charged form of bereavement.
Assessing needs and goals of dementia caregivers: development of the COPE-ING measure.
Aguirre A, Samson AE, Tindaan R … +1 more , Benge JF
BMC Palliat Care · 2026 Jun · PMID 42260480 · Full text
BACKGROUND: Supportive interventions and outcome measures for caregivers typically focus on alleviating and evaluating negative psychosocial dimensions of caregiving. Caregiver instruments that focus narrowly on measurin...
BACKGROUND: Supportive interventions and outcome measures for caregivers typically focus on alleviating and evaluating negative psychosocial dimensions of caregiving. Caregiver instruments that focus narrowly on measuring and evaluating burden, strain, depression and anxiety may overlook a given caregiver's individual needs and goals. There is an urgent need to develop psychometrically sound tools that capture caregivers' unique needs and priorities. This study examines the psychometric properties of the novel Caregiver Outcomes of Psychotherapy Evaluation-Individualized Needs and Goals (COPE-ING) measure, designed to identify priorities and goals of dementia caregivers beyond burden to a more personalized, meaningful approach. METHODS: After initial refinement of items with dementia caregivers and professionals (N = 52), the 15-item COPE-ING was administered to 100 dementia caregivers along with a range of psychosocial and dementia severity measures. We evaluated internal consistency and 2-week test-retest reliability, as well as convergent validity with caring burden, anxiety, and depression. RESULTS: Various needs were important to caregivers, suggesting that the COPE-ING taps a broad range of relevant caregiver goals. Subscales capturing needs for education and pragmatic support had modest correlations with existing caregiver burden measures, but demographic factors and caregiver burden explained less than 20% of the variance of caregivers' needs and goals. CONCLUSIONS: Dementia caregivers are a heterogeneous group with varied needs and goals. Our initial study suggests that the COPE-ING tool can be a means of addressing critical gaps in caregiver research and practice by offering a psychometrically sound measure to quickly identify individualized caregiver needs and goals. The COPE-ING measure is a practical instrument for capturing these needs and goals of dementia caregivers in clinical and research settings.
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