BMC Palliative Care[JOURNAL]
Sun
200 papers
Cultural adaptation of Educate, Nurture, Advise, Before Life Ends (ENABLE) for patients with heart failure and their caregivers in South-East Asia - a qualitative formative evaluation study.
Neo SH, Tan JY, Low ES … +6 more , Lee G, Sim DK, Yang GM, Odom JN, Bakitas M, Yoon S
BMC Palliat Care · 2026 May · PMID 42192509 · Full text
BACKGROUND: ENABLE (Educate, Nurture, Advise, Before Life Ends) is a nurse-led model of palliative care health coaching, developed in the United States. We evaluated the cultural appropriateness of ENABLE for patients wi...
BACKGROUND: ENABLE (Educate, Nurture, Advise, Before Life Ends) is a nurse-led model of palliative care health coaching, developed in the United States. We evaluated the cultural appropriateness of ENABLE for patients with heart failure (HF) and their caregivers. METHODS: For this qualitative formative evaluation study using semi-structured interviews, we recruited patients with HF, family caregivers, and healthcare clinicians from the National Cancer Centre Singapore and the National Heart Centre Singapore. Interviews focused on a) challenges living with HF b) perspectives towards coaching c) views towards ENABLE program delivery. Interviews were conducted in English and Chinese, audio-recorded, and transcribed verbatim. Data were analyzed using a hybrid deductive-inductive thematic analytic approach. RESULTS: In total, 28 participants (7 patients, 5 caregivers, 16 healthcare clinicians) reported 3 key areas relevant for adaptation - Coping with Challenges, Coaching, and Delivery. Content areas related to coping were motivating participants towards seeing the benefits of health coaching, taking control of their condition and advance care planning. Coaching content needed to be tailored for specific socio-demographic-illness factors like age, education, illness stage, and cater for caregivers' needs. Regarding coaching, participants preferred a consistent nurse coach who was specialized in health coaching, had sufficient emotional maturity, communication skills, and could individualize coaching content. Desired nurse coaching styles included being informal, not addressing issues head-on, being non-judgemental, pacing with participants and a need for overcoming potential resistance to health coaching such as an over-focus on pragmatic problem solving. Regarding delivery, participants emphasized suggestions that would improve ENABLE uptake such as the need for flexibility in ENABLE delivery such as timing and mode of coaching. The ENABLE booklet should be simple, available in multiple languages, and with Asian-centric graphics. Participants advised caution around culturally sensitive topics like death. CONCLUSION: Culturally adapted ENABLE will need to include the benefits of health coaching, taking control, and care planning. Nurse coaches will need to be trained in health coaching and communication skills. ENABLE must be flexible, accommodate different languages and socio-cultural norms, whilst overcoming barriers to health coaching. Our adaptation process lends itself as a base for cultural adaptations of ENABLE in other settings. TRIAL REGISTRATION: Not applicable.
"What you don't have, you can't give": a mixed methods assessment of healthcare professionals' palliative care knowledge and attitudes in Nigeria.
Folorunso S, Yibrehu B, Mann EJ … +13 more , Zivanov CN, Gilliland J, Fasakin FS, Allsop MJ, Avwioro T, Iwuju C, Khalid D, Nwachuku EO, Owoade IA, Oyebola FO, Kingham TP, Alatise OI, Rosa WE
BMC Palliat Care · 2026 May · PMID 42192377 · Full text
INTRODUCTION: Although palliative care (PC) is recognized as a component of comprehensive care throughout the life course and universal health coverage, more than 85% of the global need for PC is unmet. Nigeria has isola...
INTRODUCTION: Although palliative care (PC) is recognized as a component of comprehensive care throughout the life course and universal health coverage, more than 85% of the global need for PC is unmet. Nigeria has isolated PC provision, with a narrow scope, limited availability, and inadequate support for PC services, despite having adequate legislation to support the operation in the country. Given the rising incidence of chronic illnesses that are amenable to PC in Nigeria, this study aimed to explore healthcare professionals' (HCPs') knowledge and attitudes towards PC and identify targets for improving PC delivery nationally. METHODS: Using a mixed-methods convergent design, an online survey was distributed to multidisciplinary HCPs in Nigeria. The survey included validated tools that assessed knowledge and attitudes related to PC, pain management, and end-of-life (EOL) care. Five focus group discussions (FGDs) were conducted and qualitatively analyzed using rapid matrix analysis to triangulate themes with survey responses. RESULTS: From February to December 2024, 117 HCPs from 26 hospitals across five of six geopolitical zones of Nigeria completed the quantitative survey. Most respondents were nurses (67%) or physicians (26%), worked in public teaching hospitals (70%), and provided care for patients with cancer (94%). Over half (56%) received some PC training, though many expressed interest in additional training on pain management (65%), EOL communication skills (50%), and EOL ethics and decision-making (49%). FGDs from three geopolitical zones revealed 3 major themes: (1) HCPs have a shared high-level understanding of the goals of PC with varied perceptions around PC delivery; (2) Challenges in the practical delivery of PC include systemic barriers, opioid costs and stigma, and patient receptivity; (3) Delivering PC impacts HCPs' job satisfaction and takes a psychological toll. Participant-identified strategies for overcoming barriers to PC delivery included the development of standardized PC protocols, opioid policy changes, patient education about PC, and HCP training and support. CONCLUSION: HCPs in this study demonstrated broad interest in and knowledge about PC. However, systemic barriers and limited patient and caregiver receptivity limit PC uptake in clinical practice. Future initiatives should involve clinical training related to PC communication, community education programs, and implementation of contextually appropriate protocols and policies for PC delivery.
Correction: Palliative care in rural areas - collaboration between district nurses and doctors: an interview study.
Näppä U, Nässén E, Byberg I
BMC Palliat Care · 2026 May · PMID 42186036 · Full text
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The principle of double effect in palliative care: a systematic review of ethical, legal, and clinical perspectives.
Makarem RA, Patil S, Baniowdeh O … +3 more , Arar A, Muslih Y, Shengelia L
BMC Palliat Care · 2026 May · PMID 42185809 · Full text
BACKGROUND: The Principle of Double Effect (PDE) has historically been used to justify medical interventions intended to relieve suffering, even when such treatments may carry a foreseeable risk of hastening death. In pa...
BACKGROUND: The Principle of Double Effect (PDE) has historically been used to justify medical interventions intended to relieve suffering, even when such treatments may carry a foreseeable risk of hastening death. In palliative care, the doctrine is particularly relevant to opioid administration and palliative sedation. However, its relevance and practical importance remain debated in contemporary clinical and ethical discourse. OBJECTIVE: This systematic review aims to examine how the Principle of Double Effect is interpreted and applied in palliative care literature, with a focus on ethical, legal, and clinical perspectives. METHODS: A systematic search was conducted in PubMed/MEDLINE, Scopus, Web of Science, and Embase. Studies addressing the Principle of Double Effect in the context of palliative or end-of-life care were included. Titles and abstracts were screened, followed by full-text assessment based on predefined inclusion criteria. Data were extracted using a standardized form and synthesized using a thematic narrative approach. The review followed PRISMA guidelines. RESULTS: Thirty studies met the inclusion criteria. The included literature comprised ethical analyses, clinical reviews, empirical studies, and clinical guidelines, primarily originating from Europe and North America. The Principle of Double Effect was most frequently discussed in relation to opioid administration for pain and dyspnea, palliative sedation for refractory symptoms, and the ethical and legal distinction between symptom relief and life-ending practices. Evidence suggests that appropriately titrated opioids rarely shorten life, reducing reliance on the doctrine in this context. In contrast, palliative sedation remains more ethically complex, and the principle continues to play a more prominent role in its justification. While some authors support the doctrine as an important ethical safeguard, others question its practical applicability in contemporary clinical practice. CONCLUSION: The Principle of Double Effect remains a central concept in ethical discussions of end-of-life care, particularly in distinguishing symptom relief from intentional life-ending practices. However, its practical relevance is context-dependent and evolving. Further empirical research examining how clinicians interpret and apply the principle in practice is needed to clarify its role in modern palliative care.
Relevance of clinical ethics support services in specialized outpatient palliative care teams and inpatient hospices.
Seifart C, Engelhardt M, Portig I … +2 more , Sauer T, Volberg C
BMC Palliat Care · 2026 May · PMID 42177468 · Full text
BACKGROUND AND OBJECTIVES: Clinical ethics support services (CES) may support palliative care teams in ethical conflicts. However, it is not known to what extent these services are available, used and how their relevance...
BACKGROUND AND OBJECTIVES: Clinical ethics support services (CES) may support palliative care teams in ethical conflicts. However, it is not known to what extent these services are available, used and how their relevance is perceived by the teams. The study focuses on the accessibility and evaluation of ethics consultations in specialized outpatient palliative care teams and inpatient hospices. METHODS: This study conducted a cross-sectional 21-item anonymous survey among teams of registered specialized outpatient palliative care services (n = 304) and inpatient hospices (n = 260) in Germany concerning availability, utilization and evaluation of clinical ethics support services. RESULTS: A total of 175 (58%) specialized outpatient palliative care teams and 102 (39%) inpatient hospice teams responded to the questionnaire; of these two-thirds have access to CES. A number of ethical challenges were reported in these settings, many of which are perceived as burdensome. However, satisfaction with existing services is rather moderate and teams report fewer than five consultations per year. Nevertheless, ethics consultation is regarded as being highly useful, with positive effects reported, including enhanced confidence in decision-making processes and reduced burden for team members. Interestingly, team members with formal training in clinical ethics had a significant positive impact on the perception of CES and the frequency of consultations. CONCLUSION: Although specialized outpatient palliative care and inpatient hospice teams reported facing a number of burdensome ethical challenges, ethics consultations fall short of accessibility to CES. This discrepancy can be resolved by structured training of team members in clinical ethics to increase the level of awareness and utilization of CES in specialized outpatient palliative care and inpatient hospices.
Influencing factors and mediating effects of advanced medical care plan readiness in young and middle-aged patients with advanced cancer based on machine learning.
Yang X, Wei T, Ye Y … +3 more , Liang X, Huang J, Chang X
BMC Palliat Care · 2026 May · PMID 42174577 · Full text
OBJECTIVE: To examine the factors influencing advance care planning (ACP) readiness and its correlation with disease benefit perception and social support perception among young and middle-aged patients with advanced can...
OBJECTIVE: To examine the factors influencing advance care planning (ACP) readiness and its correlation with disease benefit perception and social support perception among young and middle-aged patients with advanced cancer, as well as to analyze the mediating effect of disease benefit perception on the relationship between social support and ACP readiness. METHODS: A total of 432 young and middle-aged in patients with advanced cancer from a tertiary cancer hospital in Guangxi were selected through convenience sampling from October 2024 to September 2025. The patients were assessed using a general information questionnaire, an advanced care plan readiness scale, a disease benefit sense scale, and a comprehension social support scale. First, the variables were assessed using a combination of LASSO regression and random forest techniques. Subsequently, the selected variables were incorporated into a multiple linear regression model to examine the determinants of ACP readiness, with the robustness of the findings evaluated through the Bootstrap resampling method. On this basis, mediation analysis was used to test the mediating effect of disease benefit perception on the understanding of social support and ACP readiness, and gender subgroup analysis was conducted. RESULTS: The readiness score of advance medical care plan for young and middle-aged advanced cancer patients was (76.38 ± 14.40), the disease benefit sense score was (72.50 ± 14.65), and the comprehension of social support was (52.23 ± 12.99). The outcomes of machine learning feature selection indicated that social support, perception of disease benefits, and awareness of advance care planning (ACP) significantly influence ACP readiness. Multiple linear regression analysis showed that ACP readiness was significantly reduced (β = -6.43, P < 0.001), disease benefit (β = 0.33, P < 0.001) and social support (β = 0.49, P < 0.001) were independent positive influencing factors of ACP readiness. The findings from the mediation analysis indicated that the perception of benefit derived from the disease served as a partial mediator between perceived social support and readiness for advance care planning, exhibiting an indirect effect of 0.126 (95% CI: 0.079-0.182), which constitutes 20.0% of the overall effect. The subgroup analysis showed that this mediating effect was significant in both male and female patients and was slightly higher in males than in females. CONCLUSION: The readiness for ACP in young and middle-aged patients with advanced cancer is moderate. Recognizing that social support not only directly influences the preparedness of ACP programs but also serves as a partial mediator through the perceived benefits derived from the disease. Healthcare professionals ought to enhance the development of patients' social support networks within clinical settings and focus on elevating the perceived benefits associated with their conditions. This approach aims to foster patients' inclination to engage in ACP and to refine the quality of care provided at the end of life.
A qualitative descriptive case study on the incentive strategies of hospice care volunteers.
Wu Y, Cheng R, Liu Y … +5 more , Yao Y, Gu Y, Sun D, Jiang M, Li H
BMC Palliat Care · 2026 May · PMID 42174533 · Full text
BACKGROUND: While the operational and funding structures of hospice care vary significantly across the globe, volunteers remain an indispensable component of hospice care teams. Existing research has examined volunteers'...
BACKGROUND: While the operational and funding structures of hospice care vary significantly across the globe, volunteers remain an indispensable component of hospice care teams. Existing research has examined volunteers' working experiences and training models; however, less is known about incentive strategies to promote sustained engagement. OBJECTIVE: To explore the incentive strategies for hospice care volunteers through this qualitative case study in China and thus provide evidence to enhance global volunteer retention. METHODS: A descriptive qualitative case study was conducted using participant observation and semi-structured interviews to explore hospice care volunteers' expectations for incentives, as well as administrators' perspectives on strategies to motivate and retain volunteers. Data were analyzed through conventional content analysis. RESULTS: Analysis yielded four themes and twelve sub-themes. (1) Material incentives, encompassing: Basic Subsidy Relief, Tangible Resources Empowerment, and Health and Welfare Support; (2) Organizational incentives, including: Engraving Volunteer Business Cards, Fostering Cohesive Teams, and Flexible Adaptive Management. (3) Spiritual incentives, encompassing: Multi-dimensional Value Recognition, Nourishing the Soul, and Intrinsic Motivation Enhancement. (4) Growth-oriented incentives, including: Knowledge and Skill Enhancement, Experience Sharing and Reflection, and Character Progression and Development. CONCLUSION: Organizational managers should develop incentive strategies for hospice care volunteers that align with their varied motivations for service. Given that hospice care volunteers generally prioritize spiritual fulfillment and personal growth, these strategies should focus on strengthening spiritual and growth-oriented incentives. Furthermore, incentive approaches should evolve to address the volunteers' changing needs at different stages, providing support for those with developmental aspirations to facilitate progressive growth in their roles.
Facilitators of and barriers to high-quality care at end-of-life: experiences of terminally ill patients and their relatives.
Jensen HI, Jørgensen L, Bertelsen L … +1 more , Bruun H
BMC Palliat Care · 2026 May · PMID 42169096 · Full text
BACKGROUND: To ensure coherence and continuity of care for individual patients, it is necessary to improve collaboration between healthcare systems as well as between healthcare systems and patients. The objective of the...
BACKGROUND: To ensure coherence and continuity of care for individual patients, it is necessary to improve collaboration between healthcare systems as well as between healthcare systems and patients. The objective of the study was to gain knowledge about the experiences of terminally ill patients and their relatives with the healthcare system to identify facilitators of and barriers to high-quality care in the last stage of patients' lives. METHODS: Semi-structured interviews were conducted with terminally ill patients and their relatives. The data were analysed using content analysis. RESULTS: Six patients and four relatives participated in the study. The analysis identified five themes: (1) continuity, coherence and timing: significance and challenges; (2) conversations about end-of-life: the need for an individual approach; (3) being seen and trusted; (4) "small" things may have a great significance; and (5) relatives have their own needs. Among patients and relatives who felt that the healthcare system had the overall overview and was present with the necessary help at the right time, the healthcare system provided a secure frame within which they could devote their energy to dealing with the impending farewell and trying to foster a high quality of life every day. However, in cases in which the healthcare system was not perceived to have the overall overview, patients and relatives became insecure and had to exert energy and effort to navigate the healthcare system themselves. One of the most important things for patients and relatives was that there was clear agreement regarding who was responsible for what and where they could call for help. CONCLUSION: The findings highlight the importance of continuity of care, an individual approach and the need to trust the patients. Adherence to these findings can help healthcare professionals and institutions improve end-of-life care.
Nurses' experiences in delivering bad news to families of end-of-life patients; a qualitative content analysis.
Aghaei B, Heidari MR, Norouzadeh R … +3 more , Namdari S, Abbasinia M, Mousavi SK
BMC Palliat Care · 2026 May · PMID 42169047 · Full text
BACKGROUND: Delivering bad news to families of end-of-life (EOL) patients is a complex ethical and emotional task for nurses, particularly within culturally specific contexts. This study aimed to explore the lived experi...
BACKGROUND: Delivering bad news to families of end-of-life (EOL) patients is a complex ethical and emotional task for nurses, particularly within culturally specific contexts. This study aimed to explore the lived experiences of Iranian nurses when communicating bad news to families of EOL patients. METHODS: A qualitative design using conventional content analysis was employed. Semi-structured, in-depth interviews were conducted with 18 purposively selected nurses from intensive care, emergency, oncology, and internal medicine units of teaching hospitals in Tehran, Iran. Data were transcribed verbatim and analyzed through open coding, categorization, and abstraction to identify latent themes. RESULTS: A core process emerged "Navigating the Harsh Reality" comprising three categories: (1) Preparation: assessing family readiness, creating a calm environment, and strategic timing and pacing; (2) Conveying the Bitter Truth: conveying the clinical truth, preserving truthful compassion, and facilitating intra-family communication; and (3) Providing Solace: offering professional reassurance, and communicating with empathetic language. CONCLUSION: Iranian nurses employ a structured, culturally embedded three-phase approach to bad news delivery that integrates truthfulness with compassionate, family-centered care. These findings offer a foundation for developing culturally appropriate communication guidelines and training programs in EOL care settings in Iran and comparable cultural contexts.
Association between quality of life of terminally ill patients and caregiver burden in a Saudi palliative home-care service: a cross-sectional exploratory study.
Alharbi HM, Azhari EF, Sindi AH … +2 more , El Amir Idris N, Kamel SA
BMC Palliat Care · 2026 May · PMID 42163191 · Full text
This study was approved by the Institutional Review Board (IRB) at King Faisal Specialist Hospital and Research Center/Jeddah, Saudi Arabia, given number: IRB 2021-80.BackgroundIn palliative care, patient-reported qualit...
This study was approved by the Institutional Review Board (IRB) at King Faisal Specialist Hospital and Research Center/Jeddah, Saudi Arabia, given number: IRB 2021-80.BackgroundIn palliative care, patient-reported quality of life (QoL) and caregiver burden are related but conceptually distinct outcomes. Patient QoL reflects the lived experience of advanced illness, whereas caregiver burden reflects the practical, emotional, and social demands of providing care. Although both outcomes have been examined separately, dyadic evidence from Saudi palliative care settings remains limited. This study therefore explored the association between terminally ill patients' QoL and caregiver burden in a home-based palliative care service.MethodsWe conducted a single-center cross-sectional exploratory study at King Faisal Specialist Hospital and Research Centre, Jeddah, Saudi Arabia. Terminally ill adult patients with cancer who were enrolled in palliative home-care services and their adult caregivers were recruited between July and November 2023. Data were collected through interviewer-administered questionnaires. Caregiver burden was measured using the Zarit Burden Interview (ZBI), and patient QoL was measured using the EORTC QLQ-C15-PAL. Arabic-language versions of the questionnaires were used, drawing on published psychometric work for Arabic-speaking populations [1, 2]. Because the, conveniently recruited, sample included only 30 patient-caregiver dyads, analyses were limited to descriptive statistics and exploratory univariable comparisons. Normality was assessed using the Shapiro-Wilk test; categorical comparisons were explored using chi-square tests, and non-normally distributed continuous outcomes were compared across caregiver-burden categories using the Kruskal-Wallis test.ResultsThirty patient-caregiver dyads were included. Patients had a mean age of 67.3 years (SD 13.7), and 53.3% were female. Caregivers had a mean age of 41.9 years (SD 9.4), and 63.3% were female. The overall QoL score was 44.4 (SD 24.5; 95% CI 35.3-53.5), with higher scores indicating worse QoL. The highest symptom burdens were observed for constipation and dyspnea. Twenty-four caregivers (80.0%) reported at least moderate burden, including 16 (53.3%; 95% CI 36.1-69.8) with moderate-to-severe burden and 8 (26.7%; 95% CI 14.2-44.4) with severe burden. There was borderline statistical evidence of a difference in overall patient QoL across caregiver-burden categories (p = 0.048), with worse patient QoL scores observed in dyads where caregivers reported severe burden. No significant associations were identified between caregiver burden and individual QoL subscales or the examined demographic characteristics.ConclusionsIn this small exploratory sample, both poor patient QoL and substantial caregiver burden were common. The observed relationship between worse overall patient QoL and higher caregiver burden should be interpreted cautiously because of the small sample size, borderline p-value, cross-sectional design, and lack of adjustment for confounding. These findings are best viewed as hypothesis-generating and support the need for larger, multicenter studies of patient-caregiver dyads in Saudi palliative care.
Evaluating virtual reality for anxiety reduction in children and adolescents with life-limiting conditions: a randomized pilot study.
Šebová A, Fajnerová I, Drnková L … +1 more , Hrdličková L
BMC Palliat Care · 2026 May · PMID 42163189 · Full text
BACKGROUND: Children and adolescents with life-limiting conditions (LLCs) often face distressing medical procedures, prolonged hospital stays, and other challenges, leading to heightened anxiety and psychological distres...
BACKGROUND: Children and adolescents with life-limiting conditions (LLCs) often face distressing medical procedures, prolonged hospital stays, and other challenges, leading to heightened anxiety and psychological distress. To address these symptoms, psychological interventions using modern technologies like immersive virtual reality are recommended alongside traditional treatments. While virtual reality (VR) has shown promise in reducing distress in various pediatric groups, its use in pediatric palliative care (PPC) is still emerging. The aim of this study was to assess the feasibility, acceptability and effectiveness of experiential VR intervention and compare it with a second distraction method in the form of a video in a population of pediatric patients with LLC. METHODS: This pilot randomized control trial used a crossover design with a pre- and post- intervention assessment of anxiety, fear, and pain using standardized scales. Post-session patient-reported data were also collected using supplementary items. A total of eighteen pediatric patients (8 girls, 11-17 years of age;10 boys, 10 - 17 years of age) participated in the study, randomized into two groups. The experimental group (N = 10) received VR in both sessions, while the control group (N = 8) experienced a passive video in the first session, followed by VR in the second. Given the characteristics of the sample, non-parametric statistical analyses were conducted using the Mann-Whitney U test and Wilcoxon signed rank test. RESULTS: The findings showed that VR distraction produced a statistically significant reduction in anxiety on all three occasions it was administered across both groups (experimental group: p = 0.028, r = 0.773; p = 0.049, r = 1.000; control group: p = 0.028, r = 0.905), demonstrating a consistent effect across the sample. Video distraction showed a trend toward anxiety reduction that did not reach statistical significance (p = 0.091), while producing a significant reduction in pain (p = 0.027). Among participants who received both interventions, VR was rated as significantly more enjoyable than video distraction (p = 0.036, r = -1.00). Most participants wanted to be distracted during the procedure (91%), felt that it decreased their anxiety (73%), found the VR system easy to use (96%), and wanted to use it again in future care (88%). CONCLUSIONS: These exploratory findings from a pilot RCT provide preliminary evidence that VR distraction may serve as a feasible, acceptable, and potentially efficacious complementary approach for managing anxiety in children and adolescents with life-limiting conditions. While video distraction produced broadly comparable outcomes across measures, a differential pattern was observed for the predefined primary outcome of anxiety, which warrants confirmation in a future adequately powered trial. These findings highlight the potential of distraction-based interventions to provide meaningful therapeutic benefit in this population. The significantly higher enjoyment ratings for VR and its strong acceptability further support its potential clinical value in pediatric palliative care, where positive experience and engagement are central to quality of life. Nevertheless, the practical burden of implementation and associated costs require further investigation before definitive recommendations can be made. TRIAL REGISTRATION: The study was registered retrospectively 8.1. 2025 (ISRCTN50308167).
Evaluation of community health service center training base by Shanghai hospice care competent nurse trainees: a qualitative study.
Huang Y, Wang G, Li X … +3 more , Tang Y, Yu Z, Chen W
BMC Palliat Care · 2026 May · PMID 42163159 · Full text
BACKGROUND: Enhancing the training of competent nurses in hospice care helps improve the quality of life for end-of-life care patients. The purpose of these interviews was to assess the quality of teaching and the adequa...
BACKGROUND: Enhancing the training of competent nurses in hospice care helps improve the quality of life for end-of-life care patients. The purpose of these interviews was to assess the quality of teaching and the adequacy of logistical support (including scheduling, training environment, and facilities) at the community-based terminal care competent nurse practice training base. METHODS: We conducted semi-structured interviews with 15 eligible nurses specializing in hospice care from seven administrative districts in Shanghai between September and November 2024, using Colaizzi 7 method for analysis. RESULTS: The interviews generated three main themes, which are: Operational and Personalized Deficiencies in Course Content, The Evolution of the Hospice Care Concept, and Challenges in Translating Training into Practice and Broader Systemic Support. The interviewee highlighted that while the project is practical and enhances professional competence and life values, it faces challenges in areas such as promotion opportunities, motivation mechanisms, implementation of humanistic care, nurses' willingness to learn about hospice care, salary adjustments, public awareness of hospice care, outpatient resource constraints, and the inclusion of emergency end-of-life care. These issues need to be addressed for improvement. CONCLUSIONS: This study delves into the perspectives and feedback of hospice care nursing trainees on the current training programs, offering insights into enhancing and optimizing end-of-life care training projects by analyzing the strengths and areas for improvement in teaching content, scheduling, and philosophies. The findings support driving improvements in end-of-life care-related programs, including curriculum optimization, skill enhancement, expanded training scope, and ongoing public education.
Developing patient-reported measures of serious illness care quality: synthesis of input from patients, family caregivers, health care professionals, and other experts.
Schlang D, Anhang Price R, Wolf J … +1 more , Bradley MA
BMC Palliat Care · 2026 May · PMID 42157151 · Full text
BACKGROUND: Experts have highlighted the need for standardized measures of patient and family experiences of serious illness care. To address this need, we developed surveys that can be used to derive patient-reported qu...
BACKGROUND: Experts have highlighted the need for standardized measures of patient and family experiences of serious illness care. To address this need, we developed surveys that can be used to derive patient-reported quality measures for use in assessment of home-based serious illness programs and community-based serious illness care. METHODS: In preparation for field testing of draft patient survey instruments, we conducted an environmental scan of existing surveys and measures; convened an expert panel of primary care providers, survey research experts, patient representatives, leaders of serious illness programs, stakeholder organizations, and accrediting groups; conducted in-depth interviews with 23 seriously ill individuals and/or their family caregivers and 9 health care providers; and refined draft survey instruments via multiple rounds of cognitive interviews with 53 seriously ill individuals and/or their family caregivers. RESULTS: Expert panelists and in-depth interviewees agreed that the following core aspects of serious illness care were priorities for a patient survey: communication, access and responsiveness, shared decision making and advance care planning, symptom management, care continuity and coordination, emotional and spiritual support, attention to social determinants of health (through referrals and connections to resources), attention to caregiver needs, and medication management. Based on cognitive testing, survey wording was simplified (e.g., "health care options if you got sicker" for advance care planning, avoidance of terms like "coordinate"), items were reworded to encompass both telehealth and in-person visits, and the term "health care professionals" was finalized for assessment of community-based care. CONCLUSIONS: Through engagement of seriously ill individuals, family caregivers, and providers, we identified high-priority concepts for assessment in the Serious Illness Surveys for Home-Based Programs and Community-Based Care, allowing for collection of actionable information to inform quality monitoring and improvement.
How community-based palliative care is delivered for older adults: a scoping review.
Xie Z, Dai Y, Mullan J … +3 more , Ding J, Smith K, Johnson CE
BMC Palliat Care · 2026 May · PMID 42152014 · Full text
BACKGROUND: Community-based palliative care has shown promising results in supporting older adults to remain at home, whilst providing high-quality care. However, how such initiatives are organised and delivered in pract...
BACKGROUND: Community-based palliative care has shown promising results in supporting older adults to remain at home, whilst providing high-quality care. However, how such initiatives are organised and delivered in practice varies widely, and evidence regarding service models and factors influencing delivery for older adults remains fragmented. This scoping review aimed to map and synthesize existing community-based palliative care initiatives for older adults, identifying their key service components, delivery approaches, and determinants of successful implementation. METHODS: A scoping review was conducted using PubMed, CINAHL, Embase, the Cochrane Central Register of Controlled Trials, and Scopus for studies published between January 2005 and July 2025. Descriptive analysis was used to summarize the key components of community-based palliative care initiatives for older adults. A narrative synthesis was then undertaken to code implementation strategies using the Expert Recommendations for Implementing Change (ERIC) taxonomy and to integrate determinants influencing implementation, guided by the Consolidated Framework for Implementation Research (CFIR). RESULTS: Sixteen studies describing 17 community-based palliative care initiatives for older adults were included, encompassing 56,581 older adults with mean ages ranging from 66.1 to 88.0 years. The initiatives predominantly addressed advanced life-limiting illness. Most initiatives were multidisciplinary and employed a home-based service model; all provided symptom management, care coordination, and advance care planning. Common implementation strategies included: 'Using advisory boards and working groups', 'Conducting educational meetings', 'Conducting educational outreach visits', and 'Revising professional roles.' Factors influencing delivery operated across multiple levels, including alignment with older adults' needs, organisational readiness and coordination, workforce capacity, and characteristics of the intervention. Limited integration across care settings and variable provision of staff training were commonly reported challenges. CONCLUSIONS: Community-based palliative care initiatives for older adults are mainly home-based and multidisciplinary, with consistent emphasis on symptom management, coordination, and advance care planning. Successful implementation of initiatives depends on aligning services with older adults' needs, enhancing organizational readiness and cross-sector coordination, engaging patients and caregivers, and tailoring interventions to local contexts.
Factors associated with dying in hospital awaiting palliative care admission: a retrospective cohort study.
Kang SJ, Stilos K, Huynh L … +7 more , Sugarbroad J, Bottoms J, Wynnychuk L, Torabi S, Selby D, Mead J, Bonares MJ
BMC Palliat Care · 2026 May · PMID 42152010 · Full text
BACKGROUND: Palliative care facilities, including palliative care units (PCUs), remain underutilized with individuals dying in hospital despite having applied for admission. Historically, lower proportions of individuals...
BACKGROUND: Palliative care facilities, including palliative care units (PCUs), remain underutilized with individuals dying in hospital despite having applied for admission. Historically, lower proportions of individuals with non-cancer diagnoses versus cancer diagnoses access these facilities. The study was conducted to determine the sociodemographic, functional, and clinical factors associated with dying in hospital awaiting PCU admission. METHODS: This was a retrospective cohort study using routinely collected data from a clinical database supplemented with data from a chart review in a randomly selected subgroup. The cohort included individuals hospitalized at a single hospital in Toronto, Canada awaiting PCU admission between January and December 2023. Logistic regression was used to determine factors associated with dying in hospital awaiting PCU admission. RESULTS: In the total cohort (N = 426; median age = 78 years, 52% female), a minority had a non-cancer diagnosis (32%) and an expected prognosis of hours to days (18%). Most (87%) were admitted to the PCU. The subgroup (N = 133) had similar characteristics to the total cohort. Regression analysis in the total cohort showed that dying in hospital awaiting PCU admission was associated with a prognosis of hours to days (OR = 7.42; 95% CI = 1.87-29.42) but not with having a non-cancer diagnosis, after adjusting for sociodemographic, functional, and clinical factors. Regression analysis in the subgroup showed no significant association between dying in hospital awaiting PCU admission and being followed by a palliative care specialist or having a documented goals of care discussion before the terminal admission. CONCLUSIONS: In hospitalized individuals awaiting PCU admission, only a very short prognosis was associated with dying in hospital. Despite historical evidence of poor access, a non-cancer diagnosis was not associated with dying in hospital awaiting PCU admission.
"If I have any problems, I just want to see my [primary care] doctor": perspectives on a proposed collaborative RUral PALliative care intervention (RuPal).
Anderson EC, DeSanto-Madeya S, Hudak N … +7 more , Nevers M, Desmarais L, Piccolo F, Liu R, Jacobs EA, Goldstein NE, Hutchinson RN
BMC Palliat Care · 2026 May · PMID 42151932 · Full text
BACKGROUND: People living with advanced heart failure in rural areas have poorer quality of care as their disease progresses, which may be due to lack of access to specialty palliative care. A collaborative care model, c...
BACKGROUND: People living with advanced heart failure in rural areas have poorer quality of care as their disease progresses, which may be due to lack of access to specialty palliative care. A collaborative care model, connecting specialty palliative care clinicians to embedded complex care teams in primary care practices, may increase access to palliative care in this population. Research objectives To explore perspectives on a proposed collaborative palliative care intervention and whether this intervention would be appropriate for people living with heart failure in rural areas. METHODS: We conducted a qualitative study (n=26), including patients with heart failure (n=7), caregivers (n=2), complex care team members working in primary care practices (n=5), primary care providers (n=5), interdisciplinary specialty palliative care clinicians (n=4), and cardiologists (n=3) all living and/or practicing in a rural community in Maine. Interviews were audio recorded and professionally transcribed. We used Max-QDA, line-by-line coding, and grounded theory analysis. RESULTS: We found people living and working in rural areas wanted palliative care integrated into primary care. Participants voiced suspicion about care "from outsiders" and that introduction of a specialty palliative care team into their medical care might not be well received. As one primary care provider noted "rural [people] are less influenced by … seeing the latest specialist," so describing palliative care as a specialty may not be appealing. However, participants felt that patients would be open to receiving palliative care delivered by their primary care teams. Palliative care specialists and primary care clinical staff were enthusiastic about a collaborative care model to navigate patients' desire to avoid a new team while increasing access to specialty palliative care expertise. CONCLUSION: A collaborative palliative care model may be welcomed by patients, caregivers, and clinicians in rural areas.
Pediatric home-based hospice and palliative care: a scoping review.
Davis E, Grossoehme DH, Ajayi T … +6 more , Baker JN, Hinds PS, Humphrey L, Jarrell JA, Thienprayoon R, Friebert S
BMC Palliat Care · 2026 May · PMID 42143376 · Full text
Pediatric palliative and/or hospice care is provided across a broad spectrum of settings, ranging from inpatient to outpatient to a child's home. Pediatric home-based hospice and/or palliative care teams offer a speciali...
Pediatric palliative and/or hospice care is provided across a broad spectrum of settings, ranging from inpatient to outpatient to a child's home. Pediatric home-based hospice and/or palliative care teams offer a specialized, interdisciplinary approach to care, allowing children to stay in the home while offering comprehensive support. This scoping review seeks to summarize what is known about pediatric home-based hospice and/or palliative care and to identify gaps in the current research. Following Arskey and O'Malley's scoping review framework, we searched four databases for studies focused on pediatric home-based hospice and/or palliative care programs. Studies were included if they were published between 2000 and 2024, available in English, and focused on children and young adults receiving palliative or hospice care at home, including via telehealth, in the pediatric system. Of 2,552 results initially identified, 96 met our inclusion criteria and were included in this review. Common themes emerged including studies analyzing models of care, characterizing the population, end-of-life decision making, clinical outcomes of home-based hospice and/or palliative care, costs and economic impact, family experiences, quality domains, specific treatment modalities, and the use of telehealth. Overall, the available literature supported home-based hospice and/or palliative care as an effective model of care, reducing the burden on families, improving quality of life, and allowing families to stay in their preferred setting for care without sacrificing clinical outcomes. Key research gaps included small sample sizes, limited use of control groups and scarcity of randomized clinical trials, difficulties including the perspective of the ill child in research, and a need for longitudinal studies on the effects of home-based hospice and/or palliative care on children and families. Given the compelling evidence for the benefits of pediatric home-based hospice and/or palliative care, further research into disparities in care access, best models of care, and novel payment models are critical.
Grief after the death of a close relative: a study of associated factors and perceptions of bereavement support.
Näppä U, Häggström M
BMC Palliat Care · 2026 May · PMID 42129750 · Full text
BACKGROUND: While experiencing grief following the death of a close relative is a universal experience, the grieving process and the perceived value of bereavement support vary between individuals. While research suggest...
BACKGROUND: While experiencing grief following the death of a close relative is a universal experience, the grieving process and the perceived value of bereavement support vary between individuals. While research suggests that most grief reactions are considered normal and diminish over time, some individuals experience prolonged or complicated grief. Knowledge regarding which factors are associated with grief and how bereavement support is perceived by bereaved individuals is limited. AIM: This study aimed to explore factors associated with grief reactions after the death of a close relative and to describe how bereavement support was perceived by bereaved individuals. METHODS: A quantitative cross-sectional design, including qualitative analysis of written comments was employed. The study's population was made up of 75 bereaved relatives of patients cared for by a palliative care team based in rural Northern Sweden (response rate 60%). Participants completed the Traumatic Grief Inventory Self-Report Plus (TGI-SR+, Swedish version). Statistical analyses included independent t-tests and analysis of variance (ANOVA). The qualitative component consisted of 51 written comments analysed using inductive manifest content analysis. RESULTS: Participants whose loss had occurred within the previous 12 months had significantly higher grief scores than those who had been bereaved for up to 2 years earlier. Overall, grief diminished over time, and only one item - longing and yearning for the deceased - reached pathological levels among those bereaved for less than 12 months. The qualitative findings revealed an overarching theme: the art of surviving. Participants described organised bereavement groups, professional listeners, family, friends, and even financial backing as meaningful forms of support. Some reported having no need for formal support, while a few found that talking about the loss increased their distress. CONCLUSION: Grief generally decreases over time, and no demographic factors are identified as reducing grief. Bereavement support does not necessarily need to be professional; informal and individual coping strategies may be equally important. Health care professionals should be educated to identify individuals in need of support and to provide person-centred bereavement care.
Evaluating the impact of a home palliative programme for terminally ill non-cancer patients with end-stage organ failure and severe frailty in Singapore.
Kaur P, Pereira MJ, Manohari A … +3 more , Suan LK, De Castro Molina JA, Yaw WH
BMC Palliat Care · 2026 May · PMID 42129744 · Full text
OBJECTIVE: To evaluate Programme IMPACT, a home-based palliative care initiative for terminally ill non-cancer patients with end-stage organ failure and severe frailty at the end-of-life, in achieving palliative outcomes...
OBJECTIVE: To evaluate Programme IMPACT, a home-based palliative care initiative for terminally ill non-cancer patients with end-stage organ failure and severe frailty at the end-of-life, in achieving palliative outcomes, honouring end-of-life care preferences, and reducing acute healthcare utilisation. METHODS: Patients with non-cancer diagnoses, prognosis of ≤ 6 months, palliative goals of care, and preference for home as a place of care or death were enrolled between October 2017 and December 2021. First, we employed a single-arm prospective cohort design to assess symptom control and concordance between preferences and delivered care. Second, we compared healthcare utilisation, costs and place of death between programme decedents and non-cancer controls without palliative care identified retrospectively. Utilisation was analysed with Poisson regression, costs with generalised linear models (gamma log link), and logistic regression for home deaths, adjusting for baseline confounders. RESULTS: A total of 387 patients were enrolled in the programme. Patients experienced significant clinical benefit, with mean symptom scores improving by 2.5 points on the Edmonton Symptom Assessment Scale. Concordance between preferences and outcomes exceeded 94% for CPR status and medical treatments and 89% for place of death. Compared with controls, programme decedents incurred significantly lower utilisation and costs: admissions and length of stay (Rate Ratio [RR]: 0.65-0.85, p < 0.005), admission-related and total costs (Mean Ratio [MR]: 0.56-0.75, p < 0.001), and ED visits and costs (RR & MR: 0.69-0.81, p < 0.008). They were also 16.6 times more likely to die at home (95% CI: 10.2-27.0; p < 0.001). CONCLUSION: Home-based palliative care improves symptom control, aligns care with preferences, and reduces acute hospital use and costs among this population.
Meaning-making in home-based end-of-life care: a qualitative study of wives' experiences after the loss of their husbands to cancer.
Karikawa M, Nakatani H
BMC Palliat Care · 2026 May · PMID 42121174 · Full text
BACKGROUND: Caring for a spouse with cancer at home during the end-of-life period is emotionally demanding and can have lasting effects on bereaved partners. For some wives who assume the primary caregiving role, this ex...
BACKGROUND: Caring for a spouse with cancer at home during the end-of-life period is emotionally demanding and can have lasting effects on bereaved partners. For some wives who assume the primary caregiving role, this experience becomes a source of meaning, personal growth, and relational reconstruction after loss. However, the longitudinal processes through which they derive positive meaning and rebuild their relationship over time remain unclear. This study builds on our previous research involving bereaved wives and husbands, who provided home-based end-of-life care for a partner with cancer between 6 months and 2 years after bereavement, and examines their positive interpretations of caregiving. In this follow-up study conducted approximately two years later, we re-interviewed the wives to explore how they interpreted their caregiving experiences. Through longitudinal comparison with the initial findings, we examined how caregiving meanings evolved. METHODS: We used a qualitative longitudinal design and conducted second interviews (approximately four years after bereavement) with wives who participated in the initial study and provided renewed consent. The semi-structured interviews were transcribed verbatim and analyzed using sequential comparative analysis. RESULTS: Five themes were identified: "the enduring bond of the married couple," "the importance of family members who spent time together until the end," "the meaning attached to caring for the husband in the terminal phase," "confronting life without the husband," and "reflection on one's way of life." Over time, wives gradually reconfigured their relationships with their husbands, shifting from viewing caregiving as a "concluded past" to experiencing it as a "continuing relationship in the present." This transition represents a conceptual shift, illustrating a dynamic process in which earlier interpretations are revisited and integrated into an evolving life narrative. CONCLUSIONS: The meaning-making process surrounding care for a dying husband did not remain fixed after bereavement; it evolved as a dynamic, ongoing reinterpretation. The findings indicate that positive meaning-making after loss deepens over time and is accompanied by relational growth. Through end-of-life care support, visiting nurses can understand how wives "make meaning of their marital relationship" and provide opportunities for narrative exchanges that lead to post-bereavement meaning construction.
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