BMC Palliative Care[JOURNAL]
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200 papers
Effects of online advance care planning (ACP) decision aid programmes on adults with cancer: a systematic review and meta-analysis.
Han Z, Fang Y, Yang J … +3 more , Jiang S, Ma G, Ma X
BMC Palliat Care · 2026 Jun · PMID 42251411 · Full text
BACKGROUND: Advance care planning (ACP) is important in cancer care, but discussions are often delayed or inconsistently implemented. Online ACP decision aid programmes may support ACP participation, although their effec...
BACKGROUND: Advance care planning (ACP) is important in cancer care, but discussions are often delayed or inconsistently implemented. Online ACP decision aid programmes may support ACP participation, although their effects in adults with cancer remain unclear. METHODS: A systematic search of MEDLINE, EMBASE, CINAHL, PsycINFO, Web of Science, the Cochrane Library, ClinicalTrials.gov, the World Health Organization International Clinical Trials Registry Platform, and supplementary sources was conducted from inception to 10 March 2026. Quantitative studies evaluating online ACP decision aid programmes for adults with cancer were included. Risk of bias was assessed using appropriate tools according to study design. Meta-analyses were performed using fixed- or random-effects models. RESULTS: Twelve studies met the eligibility criteria, including 10 randomised controlled trials, 1 pre-post study, and 1 single-arm quantitative evaluation study. Most studies were conducted in the USA. Pooled evidence showed that online ACP decision aid programmes significantly improved ACP documentation (OR = 2.06, 95% CI 1.29 to 3.27, p = 0.002) and ACP engagement (MD = 0.28, 95% CI 0.15 to 0.40, p < 0.0001). No statistically significant effects were found for AD completion (OR = 1.37, 95% CI 0.54 to 3.45, p = 0.50), satisfaction (MD = 0.15, 95% CI -0.25 to 0.55, p = 0.47), decisional conflict (MD=-0.72, 95% CI -5.87 to 4.43, p = 0.78), or anxiety (MD=-0.76, 95% CI -1.67 to 0.16, p = 0.11). Sensitivity analyses suggested that the findings for ACP documentation and ACP engagement were relatively robust, whereas the results for satisfaction and anxiety were less stable. CONCLUSIONS: Online ACP decision aid programmes may support ACP in adults with cancer, particularly by improving ACP engagement and ACP documentation. However, evidence for benefits beyond ACP process outcomes remains limited or inconsistent. Further rigorous studies are needed to identify effective programme features and implementation strategies.
Advance care planning for patients with advanced multiple long-term conditions: a qualitative thematic analysis of health and social care professionals' perspectives.
Simpson G, Dewhurst F, Mordue P … +4 more , Stenson C, Adley M, Brittain K, Hanratty B
BMC Palliat Care · 2026 Jun · PMID 42243823 · Full text
BACKGROUND: Advance care planning helps people plan for and communicate preferences about future care, including when decision-making capacity is lost. For people living with advanced multiple long-term conditions, advan...
BACKGROUND: Advance care planning helps people plan for and communicate preferences about future care, including when decision-making capacity is lost. For people living with advanced multiple long-term conditions, advance care planning is challenging because decline may be unrecognised, responsibility is diffused across condition-specific services, and care is fragmented. AIM: To explore health and social care professionals' perspectives on challenges and best practices in advance care planning for people with advanced multiple long-term conditions, and to generate recommendations for improving practice. METHODS: Reflexive thematic analysis of advance care planning-related interview data from a wider study examining palliative care needs and end-of-life challenges for people with multiple long-term conditions. Twenty-seven semi-structured interviews were undertaken with health and social care professionals, commissioners, and service managers in four regions of England. RESULTS: Three themes were generated: (1) Making multiple long-term conditions decline visible - cumulative illness burden and social adversity contributed to late recognition of deterioration; (2) System and organisational barriers - resource constraints, fragmented care, poor information sharing, and limited training created unclear ownership of advance care planning, with particular risks for people experiencing inequity; (3) Delivering advance care planning - effective advance care planning was introduced early, revisited iteratively, grounded in trusting relationships, and included families and care networks. CONCLUSIONS: For advanced multiple long-term conditions, advance care planning is undermined by prognostic uncertainty, care fragmentation, and inequities. Embedding prompted, iterative advance care planning into routine care, using markers such as functional decline and escalating support needs, may normalise conversations and support earlier documentation of preferences. This analysis extends needs-focused work by specifying practical mechanisms to initiate, share ownership of, and sustain advance care planning across fragmented services.
A nurse-led palliative care programme for women receiving palliative chemotherapy for breast cancer.
Gbande S, Maree JE, Obiora OL
BMC Palliat Care · 2026 Jun · PMID 42243806 · Full text
BACKGROUND: Globally, breast cancer is the most common cancer among women, with 2.3 million women newly diagnosed in 2020. In Africa, most women present with advanced disease necessitating nurse-led palliative care inter...
BACKGROUND: Globally, breast cancer is the most common cancer among women, with 2.3 million women newly diagnosed in 2020. In Africa, most women present with advanced disease necessitating nurse-led palliative care interventions. This study pilot tested a nurse-led palliative care programme for women receiving palliative chemotherapy for breast cancer at a teaching hospital in the Volta Region of Ghana. METHODS: An intervention design and pre-test post-test approach was used. The primary outcome focused on unmet palliative care needs and secondary outcomes included pain, quality of life, and spiritual needs, measured by means of the Symptoms Distress Scale (SDC), Brief Pain Inventory (BPI), Spiritual Needs Questionnaire (SpNQ), and European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire - Breast Cancer Module 45 items (EORTC QLQ-BR45). Census sampling entered 31 women in the programme but only 24 completed it. Descriptive statistics were used to analyzed the data and the Wilcoxon signed-rank test, with significance set at p ≤ 0.05, compared the medians of the two samples. The study was registered with Pan African Clinical Trial Registry (PACTR202509735988120) on September 29th, 2025. RESULTS: Results showed positive outcomes post-intervention. Symptom distress decreased from x̄ 2.98 to x̄ 1.97, pain severity reduced from x̄ 9.34 to x̄ 2.75, and quality of life improved from x̄ 2.79 to x̄ 1.94. Spiritual needs increased from x̄ 1.04 to x̄ 3.00. CONCLUSION: The study provided evidence that a nurse-led palliative care programme, based on the care needs of women with advanced breast cancer receiving palliative chemotherapy in the Volta Region of Ghana, lessened symptom distress, pain and improved quality of life.
Multi-stakeholder perspectives of palliative care needs in advanced COPD: a qualitative study.
Dong Y, Qin M, Guo X … +2 more , Qiao M, Wang H
BMC Palliat Care · 2026 Jun · PMID 42243801 · Full text
BACKGROUND: Patients with advanced chronic obstructive pulmonary disease(COPD) endure severe physical and psychological suffering, face heavier socioeconomic burdens, and experience long-term unmet needs for palliative c...
BACKGROUND: Patients with advanced chronic obstructive pulmonary disease(COPD) endure severe physical and psychological suffering, face heavier socioeconomic burdens, and experience long-term unmet needs for palliative care. This study aims to explore the multidimensional needs of patients at an advanced stage of disease, with the goal of developing customised palliative care services tailored to their specific requirements. METHODS: Between October 2024 and April 2025, semi-structured interviews were conducted with 38 participants recruited from a tertiary general hospital in Urumqi, Xinjiang Uygur Autonomous Region, China. The participants included patients with advanced COPD, their corresponding family caregivers, and healthcare professionals. Data were analysed using Braun and Clarke's thematic analysis approach. RESULTS: The analysis revealed that the palliative care needs of patients with advanced COPD arise from a dynamic framework comprising two interrelated dimensions, rather than a simple checklist. The first dimension encompasses two core needs that run throughout a patient's entire life journey: the challenges in maintaining identity and the empowerment and support system requirements. The second dimension is the time-based disease progression pillar, representing 'Needs across the disease trajectory', which encompasses needs during stable periods, acute exacerbations and the end-of-life stage. CONCLUSION: The palliative care needs of patients with advanced COPD must be addressed, as they directly impact quality of life and dignity during the final stages of life. Efforts should focus on developing systematic interventions that are culturally appropriate and policy-driven.
Acceptability and feasibility of a Patient Support Coordinator (PSC) model to facilitate serious illness communication in outpatient oncology.
Ng A, Yeo SM, Tan WM … +3 more , Chua B, Erina R, Neo SHS
BMC Palliat Care · 2026 Jun · PMID 42243766 · Full text
BACKGROUND: Conventional serious illness conversations (SICs) are frequently impeded by clinical time constraints and a lack of psychological readiness among patients. To address these barriers, this study evaluates the...
BACKGROUND: Conventional serious illness conversations (SICs) are frequently impeded by clinical time constraints and a lack of psychological readiness among patients. To address these barriers, this study evaluates the acceptability and feasibility of a novel Patient Support Coordinator (PSC)-delivered intervention that nests values and goals exploration within a non-directive supportive listening intervention facilitated by a non-clinician. Conceptualized as a preparatory adjunct to clinician-delivered SICs, this approach facilitates the open-ended exploration of patient-defined interests and concerns at a pace that respects individual preferences and coping strategies. METHODS: This single-arm, non-randomized pilot study used a convergent parallel mixed-methods design in outpatient oncology. Acceptability was assessed through Feeling Heard and Understood (FHU) and Client Satisfaction (CSQ) surveys with a predefined threshold ≥ 12/16. Qualitative interviews with patients (n = 21) and oncologists (n = 2) provided data on intervention acceptability and implementation feasibility. RESULTS: Enrollment (90.3%) and retention (85.7%) rates surpassed feasibility targets. High acceptability was demonstrated by median scores of 13/16 for the FHU (n = 19) and 15/16 for the CSQ (n = 20). While most participants met the FHU threshold, four scored below 12 due to gendered discomfort, mismatched expectations, and perceptions that they were coping well and had no need of supportive listening. Qualitatively, the PSC was described as having provided a safe emotional outlet and humanized care by addressing psychosocial needs that participants felt their treating oncologists had no room to manage. The coordinator's status as a non-clinician and capacity to demonstrate sensitivity and care were found to facilitate rapport-building, thereby enabling meaning-making and biographical reflection. Clinicians reported minimal workflow disruption and valued the PSC's ability to surface patient concerns and treatment misconceptions that often remain unvoiced in routine clinic consultations. CONCLUSIONS: Nesting values-based exploration within supportive listening is a feasible and acceptable framework for oncology care. By providing a non-clinical space for reflection, the PSC model may address common barriers to SIC initiation, enhance the patient care experience, and thus serve as an adjunct to support clinicians in SIC initiation. Future research should evaluate the model's scalability and its comparative utility against conventional clinician-led models. TRIAL REGISTRATION: ClinicalTrials.gov NCT07428655, retrospectively registered on 23 February 2026.
Current status of and factors influencing advance care planning participation among adolescents and young adults with cancer: a mixed-methods systematic review.
Kaibo S, Sheng H, Baolin H … +1 more , Zhang J
BMC Palliat Care · 2026 Jun · PMID 42237274 · Full text
BACKGROUND: Advance care planning (ACP) is increasingly recognized as important for adolescents and young adults (AYAs) with cancer, yet evidence on their ACP participation remains fragmented and largely interpreted thro...
BACKGROUND: Advance care planning (ACP) is increasingly recognized as important for adolescents and young adults (AYAs) with cancer, yet evidence on their ACP participation remains fragmented and largely interpreted through adult-oriented models. This mixed-methods systematic review aimed to synthesize the current status of ACP participation among AYAs with cancer and the factors influencing this process. METHODS: PubMed, Embase, Web of Science, CINAHL, and the Cochrane Library were searched from inception to January 2026. Qualitative, quantitative, and mixed-methods studies involving AYAs with cancer were included. Study quality was appraised using the Mixed Methods Appraisal Tool, and findings were synthesized using a convergent integrated approach. RESULTS: Fifteen studies involving 825 participants were included. ACP participation among AYAs with cancer was characterized by family-consensus-oriented decision-making, psychologically ambivalent and evolving experiences, and a gap between family preparedness and clinical implementation. Structured ACP tools facilitated family discussions and preference documentation, but communication with healthcare professionals remained limited and intervention effects attenuated over time. Participation was promoted by perceived benefits, illness-related triggers, family support, trusting clinician relationships, age-appropriate communication, and organizational support, whereas death anxiety, emotional avoidance, low self-efficacy, low perceived susceptibility, communication barriers, limited professional competence, cultural taboos, and inequities impeded engagement. CONCLUSION: ACP participation among AYAs with cancer is a dynamic, relational, and developmentally embedded process rather than a one-time autonomous decision. Future practice should adopt age-appropriate, family-sensitive, and clinically integrated approaches that support repeated ACP conversations across the illness trajectory. TRIAL REGISTRATION: This review was registered in PROSPERO on April 21, 2025 under registration number CRD420251037008.
Development and psychometric validation of a culturally adapted instrument to assess nurses' competence in delivering bad news to families of patients nearing end-of-life.
Aghaei B, Heidari MR, Norouzadeh R … +3 more , Abbasinia M, Hosseinoghli S, Saeid Y
BMC Palliat Care · 2026 Jun · PMID 42231356 · Full text
BACKGROUND: This study developed and validated a culturally grounded instrument to assess Iranian nurses' competence in delivering bad news to families of patients nearing end-of-life. METHODS: Using a sequential explora...
BACKGROUND: This study developed and validated a culturally grounded instrument to assess Iranian nurses' competence in delivering bad news to families of patients nearing end-of-life. METHODS: Using a sequential exploratory mixed-methods design, qualitative interviews with 18 nurses and a systematic review of 37 studies identified three core domains: Preparation, Conveying the Bitter Truth, and Consolation. Psychometric analyses were subsequently conducted within this mixed-methods framework to validate the developed instrument. These informed a 26-item scale, psychometrically tested with 284 nurses. RESULTS: The final instrument demonstrated strong content validity (S-CVI/Ave = 0.915), a clear three-factor structure explaining 66.82% of total variance (KMO = 0.934, P < 0.001), and high reliability (Cronbach's α = 0.945; ICC = 0.95). Items captured culturally specific strategies such as gradual truth-telling, strategic timing, non-distressing language, and empathic consolation. CONCLUSION: This validated scale provides a contextually relevant tool for evaluating and improving nurses' communication in end-of-life care, with implications for education, clinical practice, and cross-cultural research in palliative and death-related contexts. Future studies should apply confirmatory factor analysis and evaluate predictive validity across diverse settings.
Evaluating a motivational interviewing-based communication program for nurses in advance care planning: a quasi-experimental study.
Kim MY, Kim J
BMC Palliat Care · 2026 Jun · PMID 42231241 · Full text
BACKGROUND: Nurses play a key role in advance care planning; however, communication skills and confidence gaps often limit their engagement. Motivational interviewing, an evidence-based approach that supports patient-cen...
BACKGROUND: Nurses play a key role in advance care planning; however, communication skills and confidence gaps often limit their engagement. Motivational interviewing, an evidence-based approach that supports patient-centered decision-making, offers promise, but its application in advance care planning training for nurses remains underexplored. This study aimed to evaluate the effectiveness of a motivational interviewing-based advance care planning communication program in enhancing nurses' knowledge about end-of-life care, attitudes toward advance directives, communication self-efficacy, general communication skills, and communication confidence. METHODS: This study employed a nonequivalent control group pretest-posttest design and was conducted at a university-affiliated hospital in South Korea between July and September 2023. Nurses from nine inpatient wards were included, with 20 nurses from five wards assigned to the control group and 18 nurses from four wards assigned to the intervention group. The intervention group completed a three-week motivational interviewing-based advance care planning communication program, whereas the control group received usual practice with general informational materials about advance care planning. Outcome measures were assessed at baseline and one-week follow-up. Between-group differences in change scores were analyzed using t-tests or Mann-Whitney U tests. RESULTS: Two nurses in the control group withdrew from participation, resulting in 18 nurses per group. Communication self-efficacy (mean change = 19.17 vs. 2.78; U = 69.00, p = .003) and advance care planning communication confidence (mean change = 1.28 vs. -0.11; t = 2.22, p = .033) improved significantly in the intervention group. No significant differences were observed in knowledge about end-of-life care, attitudes toward advance directives, or general communication skills. CONCLUSIONS: The program partially improved advance care planning communication competencies, particularly self-efficacy and confidence. The results highlight the benefits of integrating motivational interviewing-based principles into advance care planning and clinical training programs. Larger studies with longitudinal follow-up are warranted to confirm the program's effectiveness and lasting impact on advance care planning engagement. TRIAL REGISTRATION: Clinical Research Information Service (CRIS), KCT0011692. Registered on 09 March 2026. This study was retrospectively registered.
Associations between hospital characteristics and the delivery of non-cancer palliative care: a nationwide retrospective study in Taiwan.
Tsai SJ, Lin CP, Pu C … +1 more , Kuo WH
BMC Palliat Care · 2026 Jun · PMID 42226289 · Full text
BACKGROUND: As the population ages, the need for palliative care among patients with non-cancer conditions has increased. Although the benefits of palliative care for non-cancer conditions are well established, integrati...
BACKGROUND: As the population ages, the need for palliative care among patients with non-cancer conditions has increased. Although the benefits of palliative care for non-cancer conditions are well established, integration of such care remains limited across many health systems. Taiwan's universal health system offers a unique opportunity to examine how hospital characteristics influence the delivery of non-cancer palliative care. METHODS: We conducted a retrospective nationwide analysis of all hospitals providing palliative care through either dedicated palliative care units (PCUs) or palliative shared care (PSC) under Taiwan's National Health Insurance (2016-2020). Non-cancer patients were identified based on the absence of cancer-related diagnostic codes within the National Health Insurance (NHI) claims data. The proportion of these patients receiving palliative care per hospital year was calculated. Generalized Estimating Equations (GEE) were used to stratify the data by admission year and hospital characteristics, and to assess the associations between these hospital characteristics and the delivery of non-cancer palliative care. RESULTS: Values represent adjusted estimates from GEE models. Among 355 hospital-years of PCU care, the mean proportion of non-cancer patients was 18.8% and was significantly higher at the secondary-level (7.3%, p = 0.019), community (13.5%, p = 0.003), and rural (20.1%, p < 0.001) hospitals, as well as those with more palliative care beds. In 699 hospital-years of PSC, the mean proportion of non-cancer patients was 39.7%, and it was significantly higher in hospitals without radiation oncology departments (18.1%, p < 0.001) and with fewer acute care beds (p < 0.05). In both models, the proportion of non-cancer patients steadily increased over time (p < 0.05). CONCLUSIONS: Metropolitan tertiary medical centers with advanced cancer-care infrastructure have not yet accommodated a sufficient number of non-cancer patients relative to their capacity for providing palliative care. Meanwhile, rural areas as well as secondary-level and community hospitals have shown potential to deliver such care to a larger number of patients. These findings suggest that institutional size, function, and geographic location all influence access to non-cancer palliative care. They also indicate a policy implication: strengthening capacity in smaller and rural hospitals may help expand system-wide service coverage for non-cancer patients at a reasonable cost.
Quality of life and associated factors among cancer patients receiving palliative care in Western Uganda: a cross-sectional study.
Ndinawe JB, Kabakyenga J, Namukwaya E … +1 more , Mulogo EM
BMC Palliat Care · 2026 Jun · PMID 42226156 · Full text
BACKGROUND: Quality of life (QoL) is a vital outcome of palliative care for cancer patients, yet in a number of Sub-Saharan settings, including Western Uganda, there is a dearth of evidence on the level of quality of lif...
BACKGROUND: Quality of life (QoL) is a vital outcome of palliative care for cancer patients, yet in a number of Sub-Saharan settings, including Western Uganda, there is a dearth of evidence on the level of quality of life and its correlates. Our goal therefore, was to assess the level of quality of life and associated factors among cancer patients receiving palliative care in Western Uganda. METHODS: A cross-sectional study was conducted using a pretested questionnaire that included socio-demographics, clinical information and the MissoulaVitas Quality of Life Index (MVQOLI-15R), a tool that measures quality of life of patients with advanced, incurable and progressive disease such as cancer. It is a 16-item instrument comprising of five subscales of: function, symptom, interpersonal, well-being and transcendence that encompass physical, social, psychological and spiritual dimensions. This tool was previously validated for a similar segment of patients. The above data collection instrument was translated into Runyoro and Runyankore and administered to consecutively enrolled cancer patients at Mobile Hospice Mbarara and Little Hospice Hoima, both of which are found in Western Uganda. RESULTS: Two hundred four patients were recruited. They had a mean age of58.8 ± 15.2 years and 154 (75.5%) of them were female. The commonest diagnosis was cancer of the cervix, 101(49.5%). The mean global QoL score was 3.47 ± 0.88 (possible range 0[worst] to 5[best]). The mean total QoL score was 13.44 ± 1.62 (possible range 0[worst] to 30[best]). Patients scored most poorly on symptoms (-6.78±), followed by Interpersonal (-4.01), transcendence (-3.53), function (-2.50) and well-being (1.31). The possible ranges for the subscales is (-30[worst] to 30[best]). With regard to factors associated with QoL, stage of disease, treatment with radiotherapy and pain intensity were found to have statistically significant associations with QoL of cancer patients receiving palliative care in this context. CONCLUSION: QoL of cancer patients under palliative care in Western Uganda was found to be low. Treatment with radiotherapy, pain intensity and stage of disease were established to key predictors of QoL of these patients. Therefore, it is vital for cancer patients to be diagnosed with early stage, have their pin well controlled and get treated with radiotherapy where appropriate in order to harness better outcomes such as QoL for them.
Midazolam prescription as a trigger for potential deceased donor identification outside the ICU: a prospective feasibility study.
Encarnación JA, Domínguez-Gil B, Pellicer C … +12 more , Fernández R, Moya J, Ortin A, Manso C, Fernández M, Lucas C, Jimena R, López N, Alonso-Romero JL, Ruiz P, Ortega-López ND, Royo-Villanova M
BMC Palliat Care · 2026 May · PMID 42215950 · Full text
BACKGROUND: Systematic identification of potential deceased organ donors outside the intensive care unit (ICU) remains challenging. Patients receiving palliative sedation are rarely evaluated for donation, particularly i...
BACKGROUND: Systematic identification of potential deceased organ donors outside the intensive care unit (ICU) remains challenging. Patients receiving palliative sedation are rarely evaluated for donation, particularly in non-critical care settings. OBJECTIVE: To assess the operational feasibility of a semi-automated donor identification strategy triggered by midazolam prescription for end-of-life sedation outside the ICU. METHODS: We conducted a 12-month prospective, single-center feasibility study in a tertiary university hospital in Spain. A daily pharmacy-based screening system identified new midazolam prescriptions outside critical care areas. The transplant coordination team reviewed alerts, assessed medical suitability, and explored donation preferences when appropriate. When consent was obtained, intensive care to facilitate organ donation was initiated within a controlled donation after circulatory determination of death (cDCD) pathway. RESULTS: A total of 1,398 patients were screened (mean 3.8/day). Most alerts (94%) were excluded during rapid electronic review. Ninety-one patients underwent in-depth evaluation; 12 were medically suitable and 8 proceeded to cDCD, resulting in 19 transplanted organs. During the equivalent period in the preceding year, no referrals for organ donation originated from hospitalized palliative care services. CONCLUSIONS: A semi-automated system based on midazolam prescription is operationally feasible and can be integrated into routine hospital practice to support systematic donor identification outside the ICU.
Access to palliative care by home care clients with severe and persistent mental illness: a retrospective study of health administrative data.
Yohuno E, Bédard M, Martin L
BMC Palliat Care · 2026 May · PMID 42210289 · Full text
BACKGROUND: Though it is recommended that a palliative approach be considered early during a serious or life-limiting illness, in most cases it is provided very late in the course of illness, if at all. Persons with seve...
BACKGROUND: Though it is recommended that a palliative approach be considered early during a serious or life-limiting illness, in most cases it is provided very late in the course of illness, if at all. Persons with severe and persistent mental illnesses (SPMI) have been identified as an underserved group with respect to palliative care despite higher rates of morbidity and mortality. This study examined access to palliative care (PC) by home care clients with SPMI and factors associated with access. METHODS: This study employed a retrospective study design using population-level health administrative data based on the interRAI Home Care assessment in Ontario (Canada) Prevalence of access to PC was determined and compared among those with and without SPMI. Univariate and multivariable logistic regression models were fitted to assess the association between PC access and several social-demographic and clinical factors. RESULTS: Of the 616,296 clients, 25.3% had SPMI and 2.5% accessed PC; 23.5% of those who accessed PC had SPMI. Of note, the association between SPMI and access was modified by gender (p = 0.02) and age (p = 0.04), where females with SPMI under 65 years had 15% lower odds (OR = 0.85, CI = 0.76, 0.95) of access compared to males without SPMI under 65 years. Also, females with SPMI aged 65-74 had 16% lower odds (OR = 0.84, CI = 0.76, 0.93) of access compared to males without SPMI in that age group. Together, these results indicate that women with SPMI under 75 years had lower odds of PC access than women without SPMI; this was not seen for males. CONCLUSIONS: Overall, persons with SPMI had lower access to palliative care compared to those without SPMI, and this association was modified by gender and age. Given that persons with SPMI represent approximately one quarter of home care clients, further research is needed to examine timing of provision of palliative care to persons with SPMI, as well as its outcomes in terms of symptom management and quality of life.
Adapting a brief mindful breathing intervention for self-management of distress in advanced cancer patients: the RESOLVE-i study.
Paley CA, Henderson M, Freeman S … +3 more , Acosta CR, Ziegler L, Chapman EJ
BMC Palliat Care · 2026 May · PMID 42210215 · Full text
BACKGROUND: Psychological distress is common among patients with advanced cancer and can be a barrier to effective symptom management. Despite national guidance, psychological support in UK palliative care remains limite...
BACKGROUND: Psychological distress is common among patients with advanced cancer and can be a barrier to effective symptom management. Despite national guidance, psychological support in UK palliative care remains limited. Existing interventions are frequently delivered by untrained staff lacking confidence. Adapting evidence-based interventions offers an efficient strategy to improve care. This study describes the adaptation of a brief mindful breathing intervention, originally developed in Malaysia, for self-management of distress by patients with advanced cancer in the UK. METHODS: Using Moore et al.'s ADAPT framework, we followed four stages: Step 1: A systematic review (PROSPERO: CRD42022311729) established a rationale for adapting a brief mindful breathing intervention for distress in advanced cancer. Step 2: Semi-structured interviews with healthcare professionals (HCPs) explored acceptability, perceived utility, and integration into routine care. Step 3: A series of interviews with patients and carers informed the cultural and contextual iterative adaptation of the mindful breathing intervention and the development of accessible self-management resources. Step 4: A feasibility study was designed to assess acceptability, implementation, and to generate pilot data. RESULTS: The systematic review supported the effectiveness of mindful breathing, though evidence found was context-specific to Malaysian clinical settings. HCPs endorsed integration into routine care but noted time constraints and concerns about information accessibility. Feedback from patients and carers informed several adaptations for self-management, including simplified language, inclusive imagery, removal of prescriptive instructions (e.g., breathing through the nose), and development of low-literacy resources. A video animation, infographic, and HCP training package were created to support implementation. CONCLUSIONS: This stakeholder-informed adaptation resulted in a self-management mindful breathing intervention tailored for patients with advanced cancer in the UK. The intervention is now ready for feasibility testing and represents a scalable, resource-efficient strategy to enhance psychological support in palliative care, in line with NHS goals for community-based self-management.
Readiness for home-based palliative care among primary caregivers: an explanatory sequential mixed methods study.
Kitreerawutiwong N, Keanjoom R, Kitreerawutiwong K … +3 more , Mekrungrongwong S, Thongkhamcharoen R, Tangsakul T
BMC Palliat Care · 2026 May · PMID 42210201 · Full text
BACKGROUND: The number of patients choosing home‑based palliative care (HBPC) has increased. This situation requires both patients and families to be prepared. However, the readiness for HBPC remains underexplored. This...
BACKGROUND: The number of patients choosing home‑based palliative care (HBPC) has increased. This situation requires both patients and families to be prepared. However, the readiness for HBPC remains underexplored. This study aimed to understand primary caregivers' readiness for HBPC. METHODS: An explanatory sequential mixed-methods design was used. Quantitative data were collected from 198 primary caregivers registered at Mae Sot Hospital, Thailand, using validated questionnaires. Quantitative survey results informed the selection of participants and interview questions for the qualitative phase. Qualitative data were obtained through in-depth interviews with 15 caregivers, and trustworthiness was confirmed by credibility and dependability. The quantitative data were analysed using descriptive statistics and multiple logistic regression; the qualitative phase applied content analysis. Both sets of results were then integrated and presented. RESULTS: Quantitative analysis showed that primary caregivers with full-time employment were 2.4 times more prepared than those without full-time employment. Furthermore, compared with those who perceived caregiving as a burden, primary caregivers who perceived caregiving as nonburdensome were 2.61 times more ready. The interviews identified five themes of readiness at home: (1) awareness and attitudes towards palliative care, (2) end-of-life caregiving skills at home and household readiness, (3) family commitment and shared responsibility in caregiving, (4) the need for assistance in emergency situations at home, and (5) family support after the patient's death. The integration of the data was consistent across most of the themes, whereas theme 5 emerged uniquely from the qualitative results. CONCLUSIONS: The results indicated that health professionals should increase their awareness of palliative services, support their acceptance of death, and engage in shared decision-making. Experiential training programs for caregivers, mobile consultation services, collaboration in the district health system to train caregivers, and the coordination of employment opportunities within communities by setting an appropriate rate for local caregivers, as well as establishing financial advice for families and implementing bereavement care programs, are essential for providing holistic support to families.
Policy gaps regarding social homecare in the context of end-of-life; a policy document analysis.
Elliott-Button HL, Mwaba K, Bayley Z … +10 more , Bothma J, Forward C, Hussain J, Krygier J, Pearson M, Taylor P, White C, Wray J, Walker L, Johnson M
BMC Palliat Care · 2026 May · PMID 42204690 · Full text
BACKGROUND: Social homecare workers (personal aides/assistants) are crucial for people wishing to receive end-of-life care at home. AIM: To determine current UK social care policy priorities and gaps regarding end-of-lif...
BACKGROUND: Social homecare workers (personal aides/assistants) are crucial for people wishing to receive end-of-life care at home. AIM: To determine current UK social care policy priorities and gaps regarding end-of-life care provision by homecare workers, including support and training for this workforce. DESIGN: Policy document review and content analysis; eligible documents were current UK policy documents informing homecare worker practice/service delivery, identified by team expertise, networks, study partners and bibliography review of included documents. We quantified (existence, frequency) predetermined codes of interest in relation to end-of-life/palliative/care of the dying/bereavement, homecare workforce, and support and training. Where homecare worker codes were contextually situated, we extracted and tabulated the surrounding text and examined for reference to training and support. We subjected extracted text content to framework analysis through the lens of Bronfenbrenner's Adapted Ecological Systems Theory. RESULTS: One thousand, four hundred and sixty-four homecare worker codes were identified in the 36 included documents, but only 72 times/17 documents in the context of end-of-life care. In the context of end-of-life care and homecare workers, education and training codes were present 3 and 35 times respectively. The need for end-of-life education and training was recognised, but in general, little detail about delivery and implementation was given (e.g., whose responsibility; funding; minimum standard and content). CONCLUSIONS: The homecare worker role in end-of-life care is poorly recognised in national policy. Little guidance is provided regarding minimum training standards or delivery. Given an ageing population globally and expected increased demand for end-of-life homecare, national and international policy guidance should include this workforce.
ICD-10-based screening increased detection of hospitalisations potentially eligible for paediatric palliative care consultation in the emergency department: a validation study.
de Mello V, de Almeida Campos MS, de Araújo Neves N … +7 more , Oliveira TZ, Rodrigues JPV, Volpon LC, Frangiotti MAC, Zanetti MOB, Pereira LRL, Varallo FR
BMC Palliat Care · 2026 May · PMID 42204536 · Full text
BACKGROUND: Despite emergency departments (ED) having traditionally focused on disease reversal and survival goals, care in these settings also involves paediatric patients with life-limiting or life-threatening conditio...
BACKGROUND: Despite emergency departments (ED) having traditionally focused on disease reversal and survival goals, care in these settings also involves paediatric patients with life-limiting or life-threatening conditions (LLC/LTC) who experience acute exacerbations of their illnesses. Early identification of these patients may help address unmet needs and enhance care provision. We aimed to assess the performance of the International Classification of Diseases, 10th Revision (ICD-10)-based screening strategy to detect paediatric patients potentially eligible for paediatric palliative care (PPC) team consultation in a Brazilian ED. METHODS: We conducted a cross-sectional study of 1,000 paediatric hospitalisations in the ED of a tertiary teaching hospital in Brazil (March 2020-March 2021). Potentially eligible hospitalisations were screened using Himelstein's criteria, informed by ICD-10-based classifications of LLC/LTC, paediatric complex chronic conditions, and multidisciplinary PPC team input. Eligibility was confirmed through chart review and multidisciplinary discussion. Screening performance was evaluated using standard diagnostic accuracy measures. RESULTS: Eighty-three hospitalisations were confirmed as potentially eligible for PPC consultation. The ICD-10-based strategy showed high sensitivity (0.99) and negative predictive value (1.00), with moderate specificity (0.73) and low positive predictive value (0.25). It increased case detection by 1.5-fold. Eligible hospitalisations were associated with younger age, higher mortality, and longer length of stay. CONCLUSIONS: ICD-10-based screening was a high-sensitivity strategy for identifying paediatric hospitalisations potentially eligible for PPC consultation. Although not sufficient as a stand-alone diagnostic approach, it may support systematic case-finding and earlier identification of unmet PPC needs, particularly in settings with limited-service integration.
Good death and end-of-life care preferences: perspectives from older Singaporeans.
Lee HJ, Jung I, Chen S … +2 more , Park MS, Luk SCY
BMC Palliat Care · 2026 May · PMID 42204528 · Full text
BACKGROUND: Reflecting on the rapidly ageing population with a growing need for end-of-life (EOL) care and ethnic diversity in Singapore, it is important to understand culturally specific views on the meaning of good dea...
BACKGROUND: Reflecting on the rapidly ageing population with a growing need for end-of-life (EOL) care and ethnic diversity in Singapore, it is important to understand culturally specific views on the meaning of good death and end-of-life (EOL) care plans and preferences. METHODS: This study explores older Singaporeans' perspectives on the meaning of good death and their end-of-life (EOL) care plans and preferences, by conducting 18 in-depth interviews with older Singaporeans. The data was analysed using an iterative thematic analysis involving independent coding followed by iterative discussion and refinement of themes. RESULTS: We found four attributes of good death, including being free of pain or suffering, not being a burden on family members, accepting mortality, and fulfilling parental and spousal responsibility. As regards EOL care plans and preferences, we found that most of the older adults interviewed never had an open and detailed EOL conversation with their family members. Four barriers to EOL care planning or preference discussions were identified: the degree of readiness, fear of making them unhappy, leaving it up to family, and interpersonal and social influence. CONCLUSIONS: To encourage older adults to make EOL care plan while they are healthy and competent, we suggest that the government promote professionally appropriate and family-engaged EOL care services tailored towards individuals, and open and ongoing conversations between older adults and their family members.
Hidden work and blurred boundaries: a qualitative study of how community nurses navigate and adapt injectable medication processes to provide timely end-of-life symptom control.
Fennessy R, Clarkson PJ, Bowers B
BMC Palliat Care · 2026 May · PMID 42204517 · Full text
BACKGROUND: With rising numbers of people dying at home, often with complex multimorbidity, community healthcare professionals are increasingly responsible for providing end-of-life care. This care is usually led by comm...
BACKGROUND: With rising numbers of people dying at home, often with complex multimorbidity, community healthcare professionals are increasingly responsible for providing end-of-life care. This care is usually led by community nurses, many of whom do not have specialist palliative care training. A core part of their role is providing end-of-life symptom control using injectable medications prescribed ahead of need and stored in patients' homes. However, cross-organisational systems around injectable medication processes are complex and time consuming. We aimed to explore community nurses' perceptions of their changing roles in end-of-life care and how they navigate injectable medication processes to provide timely symptom control. METHODS: A qualitative study using in-depth interviews with community nurses undertaken in two counties in England. Data were analysed using reflexive thematic analysis. RESULTS: Fifteen community nurses took part. Nurses' roles in end-of-life care were characterised by increasing scope and complexity, making it challenging to offer the holistic care they wanted to. Using their practical knowledge and wisdom, nurses navigated and sometimes adapted (changed) challenging injectable medication processes to ensure timely symptom control for patients. This involved considerable additional hidden work conducted on behalf of patients, families, nursing colleagues and general practitioners. Some nurses appreciated the autonomy and independence they had in navigating and adapting injectable medication processes. However, others perceived their expanding remit in end-of-life care and the increasingly blurred boundaries between their role and that of general practitioners as sources of anxiety and professional risk. CONCLUSIONS: To ensure community nurses feel confident, empowered and professionally safeguarded to take on this multifaceted and increasingly complex work, further experiential learning with palliative care colleagues is required, in addition to assured support from regulatory organisations. Exploring how other healthcare professionals, including pharmacists and paramedics, alongside families, navigate and adapt injectable medication care can make other hidden work visible and identify priority areas for system-wide improvements.
"We do what needs to be done": caregivers' experiences of healthcare and support for people with multiple long-term conditions in the last year of life.
Bowers SP, Kerr E, Murphy E … +8 more , Galbraith J, McIntyre C, Weir MC, Ward M, Mills SEE, Williams L, Bowden J, Quirk F
BMC Palliat Care · 2026 May · PMID 42204504 · Full text
BACKGROUND: Towards the end of life, people with multiple long-term conditions face an array of challenges associated with their growing healthcare needs including unclear illness trajectories and multifaceted uncertaint...
BACKGROUND: Towards the end of life, people with multiple long-term conditions face an array of challenges associated with their growing healthcare needs including unclear illness trajectories and multifaceted uncertainty. Caregivers, most often family or friends, play a key role in providing and coordinating care at the end of life. This study aimed to explore, through the perspective of bereaved caregivers, the experiences of healthcare and support in the last year of life for people with multiple long-term health conditions. METHODS: Interpretative Phenomenological Analysis was used to analyse semi-structured interviews with 12 bereaved caregivers who had cared for relatives with multiple long-term conditions over the last year of life. Public advisors with lived experience as caregivers were key contributors to this study, aiding in study conceptualisation, design and analysis. RESULTS: There were five key group experiential themes identified: (i) Multiple conditions mixed in together impacting prognostication, (ii) Dynamic, coordinated care from healthcare services supported caregivers, (iii) Information from various sources helped caregivers make person-centred decisions, (iv) Caregivers had to decide when and where to seek help, with a preference for known, trusted healthcare professionals and (v) Being a caregiver has a changing, persisting impact. CONCLUSIONS: Bereaved caregivers faced challenges in appraising the multiple conditions that their relative had towards the end of life. This, alongside prior healthcare experiences and information gathered by caregivers, influenced how they accessed healthcare and support for their relative. Empowering caregivers and integrating their experiences into clinical practice will be key to supporting them in providing necessary care for those close to them at the end of their life.
Understanding posttraumatic growth in palliative care: a qualitatively driven mixed-methods study using patients' life narratives.
Galbiati L, Baader E, Bovet E … +6 more , Borasio GD, Poncin E, Mercoli JB, Diawara F, Grosjean-Bagnoud A, Bernard M
BMC Palliat Care · 2026 May · PMID 42192534 · Full text
BACKGROUND: Numerous studies have revealed that the shock engendered by a serious illness can lead to positive psychological changes known as posttraumatic growth (PTG). Most studies examined this phenomenon in early-sta...
BACKGROUND: Numerous studies have revealed that the shock engendered by a serious illness can lead to positive psychological changes known as posttraumatic growth (PTG). Most studies examined this phenomenon in early-stage cancer and with the Posttraumatic Growth Inventory (PTGI). Our current understanding of the psychological processes behind PTG remains limited. Through life narrative interviews, our study aims (i) to describe profiles of psychological changes of palliative care patients and to highlight characteristics of these changes, and (ii) to link these profiles with quality of life and PTGI. METHODS: This study adopted a multi method design. Semi-structured interviews were conducted with patients based on the Biographic Narrative Interpretive Method (BNIM) in three centres in Switzerland. An ideal-type analysis was used to establish ideal-types of changes and a thematic analysis to highlight characteristics of these changes. In addition, posttraumatic growth and quality of life were assessed through the PTGI and the McGill Quality of Life-Revised questionnaire (MQOL-R). RESULTS: In total, 23 patients participated (13 female, median age = 73). The ideal-type analysis identified four types of psychological changes: (i) "Overcoming adversity" (n = 6), (ii) "Resilience" (n = 7), (iii) "Resigned acceptance" (n = 3), (iv) "Psychological suffering" (n = 7). "Overcoming adversity" and "Resilience" showed higher PTGI scores than "Resigned acceptance" and "Psychological suffering". "Overcoming adversity", "Resilience" and "Resigned acceptance" showed higher MQOL-R scores than "Psychological suffering". CONCLUSIONS: Regarding research, life stories offer an innovative way to understand and highlight patient's psychological profiles shaped by past experiences and surpassing the limits of questionnaires. In term of clinical perspective, narrative techniques, known to promote meaning-making, offer valuable opportunities to consider both past and present experiences of patients and thus understand and support their psychological adaptation to face serious illness at the end-of-life.
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