BMC Palliative Care[JOURNAL]
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Correction: Improving patient reported experience in inpatients with palliative care needs: a pre-post quality improvement study.
Virdun C, Jones L, Singh GK … +3 more , Yates P, Phillips JL, Mudge A
BMC Palliat Care · 2026 Mar · PMID 41913151 · Full text
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"It sounds unfamiliar, yet appealing": a qualitative study on perceptions of a good death and hospice care needs among older adults in remote rural China.
Yu H, Song L, Wu Y
BMC Palliat Care · 2026 Mar · PMID 41896842 · Full text
BACKGROUND: Hospice care remains largely inaccessible in remote rural regions of China. Discussions about death are often considered cultural taboos, and older adults in these areas face significant disparities in end-of...
BACKGROUND: Hospice care remains largely inaccessible in remote rural regions of China. Discussions about death are often considered cultural taboos, and older adults in these areas face significant disparities in end-of-life care due to low socioeconomic status, limited transportation, and insufficient healthcare infrastructure. Few studies have examined how this population conceptualizes a good death or their willingness to receive hospice care. This study explores rural Chinese older adults’ expectations and needs regarding a good death, as well as their perceptions of hospice care. METHODS: We conducted semi-structured, open-ended interviews with 21 older adults and performed an inductive thematic analysis on the collected data. RESULTS: Six key themes emerged: family presence at the end of life under structural constraints, dying at home as a culturally grounded and practically shaped choice, relief from uncontrolled physical and financial suffering, emerging interest and interpretations of hospice care, structural and policy barriers to dignified end-of-life care, and pursuit of inner peace through relational and emotional fulfillment. These findings reveal the complex, interconnected, and multidimensional nature of older adults’ perceptions of a good death and their understanding of hospice care in remote rural areas. CONCLUSION: The findings highlight the urgent need to strengthen hospice services in rural China, ensuring they are accessible, meaningful, and responsive to local economic, caregiving, and geographic conditions. Future research and practice should focus on implementing a coordinated three-tiered county-township-village hospice care service model to expand and sustain hospice care effectively.
Estimating the need for palliative care services in Australia by 2042.
Luc I, Dadich A, Laurence C
BMC Palliat Care · 2026 Mar · PMID 41896825 · Full text
BACKGROUND: As in many countries, Australians are living longer and experience greater rates of chronic conditions. This can require greater use of palliative care services. However, there is limited research on how many...
BACKGROUND: As in many countries, Australians are living longer and experience greater rates of chronic conditions. This can require greater use of palliative care services. However, there is limited research on how many people would benefit from palliative care. The aim of this study is to estimate the current and future need for palliative care services in Australia and within geographical regions. METHODS: Using national mortality data and population projections, the study used two methods to estimate the observed (2011 to 2022) palliative care need in Australia by age, sex, and geographical area. These were: 75% of all deaths would require palliative care; and a diagnostic based approach on main underlying cause of death. These methods were used to estimate the future need for palliative care, applying the proportion of palliative deaths to the Australian Bureau of Statistics projected deaths to 2042 using 75%, the 2022 proportion of diagnostic-based deaths, and the mean annual change in proportion of these deaths from 2011 to 2022. Analyses were also performed across sex, age group, geographical areas and disease group to identify areas of increasing palliative care need. RESULTS: The two methods demonstrated a growing need for palliative care in the observed and projected period. From 2011 to 2022, there was an 18 to 30% increase in the number of people who needed palliative care. From 2023 to 2042, there will be an increase of 37 to 65% in the number of people needing palliative care. People aged over 85 years, as well as people living with cancer and dementia are expected to drive the future need for palliative care. The need for palliative care in regional and remote areas is greater than that in the major cities. CONCLUSION: Current workforce trends in Australia are unlikely to meet the growing need for palliative care. Future palliative care services must be developed in line with these findings and further research is required ensure an adequate supply of palliative care to match the expected demand.
Case report of severe hypocalcemia with atypical symptoms after zoledronic acid in palliative care: a deprescribing pitfall.
Arnold T, Berner-Sharma J, Rudolph D … +2 more , Bausewein C, Rémi C
BMC Palliat Care · 2026 Mar · PMID 41864904 · Full text
BACKGROUND: Symptomatic hypocalcemia is an uncommon metabolic disturbance in palliative care and may therefore be overlooked. While deprescribing is a key principle in this setting, routine discontinuation of calcium and...
BACKGROUND: Symptomatic hypocalcemia is an uncommon metabolic disturbance in palliative care and may therefore be overlooked. While deprescribing is a key principle in this setting, routine discontinuation of calcium and vitamin D supplementation may be harmful in selected high-risk patients, particularly after recent antiresorptive therapy. CASE PRESENTATION: A 74-year-old woman with hormone receptor-positive metastatic breast cancer, extensive bone metastases and chronic kidney disease, was admitted to a German palliative care unit. Four weeks prior, she had received zoledronic acid, and calcium and vitamin D supplementation were discontinued on admission. She subsequently developed persistent nausea, vomiting and bronchospasm without classical neuromuscular signs, which were initially attributed to other causes. At a corrected calcium nadir of 0.95 mmol/L intravenous calcium was started and symptoms resolved. Oral intake resumed and supplementation was restarted. She was discharged to hospice care and died nine months later. CONCLUSION: After recent antiresorptive therapy, especially in patients with additional risk factors such as renal impairment, hypocalcemia may present with atypical symptoms including nausea or bronchospasm. This case highlights a potential pitfall of deprescribing in palliative care and underscores the need for individualized decisions regarding calcium and vitamin D supplementation to prevent delayed diagnosis and avoidable symptom burden.
Does experience of a significant other's death affect Korean older adults' end-of-life care planning by encouraging death talks?
Ha JH, Pai M
BMC Palliat Care · 2026 Mar · PMID 41862945 · Full text
BACKGROUND: This study investigates whether Korean older adults who experienced the death of a significant other are more likely to engage in end-of-life care planning (EOLCP), and whether discussing their own death cont...
BACKGROUND: This study investigates whether Korean older adults who experienced the death of a significant other are more likely to engage in end-of-life care planning (EOLCP), and whether discussing their own death contributes to this relationship. We also examine the relevance of caregiving experience, time since death, and death suddenness for EOLCP. METHODS: The analyses are based on survey data collected in 2021 from a nationally representative sample of Korean older adults aged 60 years or older. We used multi-stage stratified cluster sampling techniques to draw our sample (N = 610). Descriptive, logistic regression, and mediation analyses are conducted. RESULTS: Results showed that bereaved individuals were more likely to engage in EOLCP than non-bereaved peers, and this association was accounted for by opportunities to talk about one’s own death. Among those bereaved, caregiving prior to death and a more recent loss were both positively associated with EOLCP. CONCLUSIONS: The findings suggest that experiencing the death of someone close – particularly a recent or caregiving-related death – is associated with greater engagement in EOLCP. Encouraging conversations about death may improve end-of-life outcomes among older Koreans.
Navigating the landscape of paediatric haematological malignancies: a qualitative exploration of caregivers' experiences and palliative care integration in Pakistan.
Shariq S, Sultan A, Bukhari SI … +4 more , Zehra N, Fadoo Z, Zaheer H, Resham S
BMC Palliat Care · 2026 Mar · PMID 41857566 · Full text
BACKGROUND: In Pakistan, over 10,000 children are diagnosed with cancer annually, with leukemia being the most common. These cases present challenges in symptom management, prognosis, and caregiver burden. Despite eviden...
BACKGROUND: In Pakistan, over 10,000 children are diagnosed with cancer annually, with leukemia being the most common. These cases present challenges in symptom management, prognosis, and caregiver burden. Despite evidence supporting early integration, the use of palliative care (PC) in paediatric haematology-oncology remains inconsistent. There is a need for more evidence from underrepresented contexts where sociocultural factors strongly shape parental attitudes and needs. This study aims to explore the experiences of caregivers of children with haematological malignancies living in Pakistan. The study also seeks to identify the unmet needs of affected families, as perceived by caregivers, to inform strategies for improving palliative care delivery and support. METHODS: This study employed a descriptive phenomenological design underpinned by an interpretivist paradigm. In-person, and telephone, semi-structured interviews were conducted at a private tertiary care hospital in Karachi, Pakistan. Purposive sampling was used to recruit 13 caregivers of 9 children (aged 0–18) with haematological malignancies. Families receiving treatment involving palliative care integration were included. Thematic analysis was performed via Dedoose software. RESULTS: Nine interviews were conducted. Caregivers faced emotional distress, social isolation, and financial burden. These challenges reduce their ability to care for their child, their child’s siblings, and maintain personal wellbeing. While caregivers draw strength from their faith, there remains a need for structured psycho-socio-spiritual support. Specialised palliative care was perceived favourably for its holistic approach, enhanced communication between healthcare providers and caregivers, and ability to reframe hope. CONCLUSION: This study highlights the need for early integration of comprehensive palliative care services to address caregivers' emotional, practical, and spiritual needs; improve communication; and enhance outcomes for both children and families.
Family communication, death taboo, and advance directives: a cross-sectional study of institutionalized older adults in China.
Tian Y, You W, Xu C … +1 more , Zhang Y
BMC Palliat Care · 2026 Mar · PMID 41857558 · Full text
BACKGROUND: A conceptually guided framework examining how family communication relates to advance directive completion rates among older adults may offer useful insights for improving end-of-life decision-making in aging...
BACKGROUND: A conceptually guided framework examining how family communication relates to advance directive completion rates among older adults may offer useful insights for improving end-of-life decision-making in aging societies. However, persistent inconsistencies across studies remain unresolved, coupled with limited mechanistic explanations. METHOD: The data are derived from a field survey project conducted in August 2023, targeting older adults residing in a public elder care institution in Hangzhou, China. This project collected data from 571 participants regarding their inclination toward death taboo, attitudes toward advance directives, and decisions on advance directive formulation. Moderation modeling and marginal analysis are employed to examine the relationships among family communication, death taboo, and advance directive completion. RESULTS: A total of 25.09% of participants report avoiding discussions about death in family settings, while 57.27% perceive advance directives as beneficial, and 21.72% formulate a personal advance directive. Family communication is associated with an 11.44% higher probability of advance directive completion, whereas death taboo shows a significant interaction effect, with the positive association attenuated at higher levels of death taboo. CONCLUSION: This study suggests that higher levels of death taboo are associated with a weaker relationship between family communication and advance directive completion. We interpret this pattern cautiously within a family protectionism framework, where death taboo may reflect protective information shielding within family networks and may also be linked to a “fear-of-fear” dynamic.
Disparities in pain management among patients with life-limiting illnesses in Latin America: a scoping review.
Garcés MG, Montoya JC, Martínez MIP … +2 more , García JV, Rincón EHH
BMC Palliat Care · 2026 Mar · PMID 41857554 · Full text
INTRODUCTION: Patients with life limiting illnesses frequently experience moderate to severe pain, and many do not receive adequate analgesic control. In Latin America, palliative care coverage remains limited and access...
INTRODUCTION: Patients with life limiting illnesses frequently experience moderate to severe pain, and many do not receive adequate analgesic control. In Latin America, palliative care coverage remains limited and access to essential opioids is often restricted, contributing to important inequities in pain management. OBJECTIVE: To map and characterize the available evidence on disparities in pain management among patients receiving palliative care in Latin America, with particular attention to structural, cultural, and educational determinants associated with unequal access and treatment. METHODS: A scoping review was conducted in three indexed databases, PubMed, Scopus, and Web of Science, and supplemented by snowball searching. Articles published between January 2019 and June 2025 were screened, yielding 511 records in total. After removal of duplicates and application of predefined inclusion and exclusion criteria, 19 studies were included in a thematic synthesis. RESULTS: The evidence was organized into seven thematic categories: identified disparities; access to and availability of analgesic treatments; training of healthcare professionals; pain perception and patient and family satisfaction; clinical consequences associated with inadequate pain management; recommendations reported in the literature; and knowledge gaps and areas for future research. The findings suggest that disparities are associated with limited service distribution, regulatory and administrative barriers affecting opioid access, insufficient professional training, and sociocultural influences shaping pain perception and treatment decisions. CONCLUSION: The available evidence indicates that important inequities in pain management persist across Latin America. These disparities appear to be linked to structural constraints within health systems, uneven service distribution, regulatory challenges in opioid access, and gaps in professional education. Coordinated regional efforts, including strengthened training, improved access to essential medicines, and culturally responsive care strategies, may contribute to advancing more equitable palliative care delivery. Further context specific research is needed to inform policy development and implementation.
Attitudes toward death in nursing staff: the role of resilience.
Arribas-García S, Petkari E, Jaureguizar J … +3 more , Sánchez-Gutiérrez T, Morales I, Doval S
BMC Palliat Care · 2026 Mar · PMID 41851766 · Full text
BACKGROUND: Nurses frequently care for patients at the end of life, yet many lack adequate preparation to manage the associated emotional challenges. Attitudes toward death influence both the quality of end-of-life care...
BACKGROUND: Nurses frequently care for patients at the end of life, yet many lack adequate preparation to manage the associated emotional challenges. Attitudes toward death influence both the quality of end-of-life care and nurses´ own psychological well-being. Although resilience has been identified as a potential protective factor, its role in shaping attitudes toward death among nursing professionals remains insufficiently explored. This study examined the role of resilience in attitudes toward death and analyzed personal and occupational factors associated with these attitudes prior to the COVID-19 pandemic. METHODS: This observational cross-sectional study included 742 nursing professionals working in Intensive Care, Palliative Care and Oncology units across seven public hospitals in Spain. Participants completed the Death Attitude Profile-Revised, the Connor-Davidson Resilience Scale and an ad-hoc questionnaire assessing sociodemographic and professional variables between June 2018 and April 2019. Multivariate analyses of variance, correlation analyses, mediation and moderation analyses, and principal component analysis were conducted. RESULTS: Neutral-Acceptance was the most predominant attitude toward death (M = 5.68, SD = 0.90), followed by Fear-of-Death (M = 3.70, SD = 1.39) and Death-Avoidance (M = 3.53, SD = 1.59). Attitudes toward death were significantly associated with professional category, age, prior training in death and bereavement, healthcare setting, and resilience (all p<.05). Resilience correlated positively with Neutral-Acceptance and negatively with Fear-of-Death and Death-Avoidance. Mediation analyses showed that resilience fully mediated the relationships between several professional factors and key death attitudes, with suppression effects observed in some models. CONCLUSIONS: Resilience and prior training in death and dying appear to play an important role in shaping nurses´ attitudes toward death. Integrating resilience-enhancing strategies and structured death education into both academic curricula and continuing professional training may contribute to nurses´ emotional well-being and to the quality of end-of-life care.
Exploring challenges and opportunities in paediatric bereavement care: a qualitative study from a tertiary care hospital in Pakistan.
Hussain H, Altaf S, Khalid A … +9 more , Hashmi SMI, Rehman N, Bharuchi V, Rahman F, Shafi A, Syed A, Fadoo Z, Mushtaq N, Resham S
BMC Palliat Care · 2026 Mar · PMID 41851707 · Full text
BACKGROUND: In Pakistan, most children with life-threatening illnesses present at advanced stages and succumb to death, leaving families emotionally traumatised. Parental bereavement leads to long-term psychosocial and f...
BACKGROUND: In Pakistan, most children with life-threatening illnesses present at advanced stages and succumb to death, leaving families emotionally traumatised. Parental bereavement leads to long-term psychosocial and financial hardships for families, thus highlighting the need for bereavement care as a crucial part of paediatric palliative care. This study explores key challenges around lack of bereavement care in the healthcare infrastructure in Pakistan and identifies opportunities to establish this programme for grieving families. METHODOLOGY: This study presents a secondary qualitative analysis derived from a larger parent study exploring parental experiences following the death of a child. Participants included bereaved parents 2–5 years after their child’s death from oncologic or non-oncologic illnesses at Aga Khan University Hospital, Karachi. A qualitative, phenomenological design was implemented, with semi-structured interviews. Data collection continued until thematic saturation was achieved. Thematic analysis was conducted using DeDoose software. RESULTS: Nineteen bereaved parents were interviewed, including parents of children with oncological (n = 10) and non-oncological (n = 9) diseases. No clear thematic differences were observed between parents of children with oncologic and non-oncologic conditions. Parents described gaps in communication with healthcare teams, particularly in receiving emotional support, which led to feelings of isolation. Many faced barriers to accessing psychological care, including limited awareness, cultural stigma, and financial constraints. Parents expressed concerns about siblings struggling silently with grief, highlighting the need for bereavement resources and professional psychological support for them as well. Cultural norms around grief expression were also seen as a challenge, hindering emotional processing, and delaying healing within families. Parents also identified a lack of institutional bereavement care practices, such as a condolence message or note and any educational materials. CONCLUSION: Bereavement care in Pakistan remains underexplored in the literature. This highlights critical gaps and provides context-specific recommendations for establishing bereavement services based on parental recommendations. Key opportunities for improvement include institutional initiatives for structured bereavement care and addressing societal taboos around grief expression. These changes can foster an environment where bereaved families receive the support they need.
Palliative care in rural, remote, and northern communities: a scoping review.
Magyar N, Kortes-Miller K, Martin L
BMC Palliat Care · 2026 Mar · PMID 41851669 · Full text
OBJECTIVE: To review and analyze existing literature on palliative care in rural, remote, and Northern communities and consider the gaps that remain in research in order to guide the direction of the current project. INT...
OBJECTIVE: To review and analyze existing literature on palliative care in rural, remote, and Northern communities and consider the gaps that remain in research in order to guide the direction of the current project. INTRODUCTION: Like other areas of healthcare, persons living in rural, remote, and Northern regions face unique barriers when accessing palliative care in their communities. This scoping review provides an analysis of the current literature addressing palliative care in rural, remote and Northern regions globally and identifies themes in existing literature to determine areas of need for future research. METHOD: Primary studies published in English in peer-reviewed journals between January 1, 2010 and February 2024 were identified CINAHL, ProQuest, PubMed, and OMNI. RESULTS: A total of 53 studies were eligible for data extraction. The existing literature identifies several common barriers and facilitators to accessing palliative care. Identified barriers include travel and cost of accessing care, policy issues, lack of communication, lack of knowledge/education. On the other hand, the identified facilitators include collaboration, advanced care planning, specialized education and training of care partners, utilization of telemedicine, and the use of volunteers. CONCLUSION: Suggestions for addressing barriers and leveraging facilitators to palliative care in rural, remote, and northern locations throughout Canada were presented. Future research should build upon this knowledge to guide positive changes towards the shared goal of equitable access to palliative care for all Canadians, regardless of where they live.
A cost analysis of implementing facilitated improvements in hospital palliative care using patient reported experience measures: the LEAHP (Listen Empower Act - Hospital Palliative care) bundle.
Button E, Virdun C, Mudge A … +5 more , Donovan T, Singh GK, Yates P, Phillips JL, Carter H
BMC Palliat Care · 2026 Mar · PMID 41845392 · Full text
BACKGROUND: Acute inpatient care does not always align with the known palliative care needs and preferences of people with deteriorating health. The LEAHP (Listen, Empower and Act to improve Hospital Palliative care) bun...
BACKGROUND: Acute inpatient care does not always align with the known palliative care needs and preferences of people with deteriorating health. The LEAHP (Listen, Empower and Act to improve Hospital Palliative care) bundle is a novel intervention combining collection and feedback of patient reported experience measures (PREMs), an understanding of context, co-design of a shared vision and facilitated clinician-led improvements in quality of care, for inpatients with palliative care needs. We describe the resource requirements for pilot implementation of the LEAHP bundle, and potential cost considerations for sustaining and spreading this initiative. METHODS: A prospective costing analysis was conducted alongside a pre-post implementation study between May 2022 and Nov 2023 across three wards in a large hospital in Australia. A health service perspective was taken, with costs collected during the study period and valued in 2023 Australian dollars. Costs included Project Team and Clinical Team labour, as well as non-labour resources. Time-driven, activity-based costing methods were adopted, with implementation activities categorised using a modified Expert Recommendations for Implementing Change (ERIC) Framework headings. A scenario analysis explored cost reductions that would support sustaining and spreading of the initiative. RESULTS: The total average cost of implementing the LEAHP bundle for each ward over approximately 12 months was $37,019; consisting of $26,289 (71%) Project Team, $8,870 (24%) Clinical Team, and $2,053 (5%) non-labour average costs. The greatest percentage of costs was attributed to the Facilitator (average $13,488 per ward, 36% overall) and the Research Nurse (average of $10,868 per ward, 29%). In a scenario analysis testing sustainment and spread, the total average cost of implementing the LEAHP bundle was an average of $25,251 per ward ($15,212 [60%] Project Team, $8,373 [33%] Clinical Team, and $1,667 [7%] non-labour costs) – 32% less than the base case. CONCLUSIONS: Pilot implementation of the LEAHP bundle required investment from both the Project Team and Clinical Team to enable facilitation, collection of PREMs, an understanding of context, and engagement of clinicians to implement improvements for inpatients with palliative care needs. Sustainment would be contingent on the resources required for facilitation in a changing clinical context and on mechanisms for collecting and processing the PREM data. Future research is warranted to explore sustainable and widescale implementation of this promising intervention.
Signs and symptoms indicating the transition to the palliative phase in patients with COPD and heart failure in primary healthcare: a mixed-methods study.
Swinkels E, van den Berg GH, Magnée M … +3 more , Pelgrum-Keurhorst M, Huisman-de Waal G, van Gaal BG
BMC Palliat Care · 2026 Mar · PMID 41845282 · Full text
BACKGROUND: Early identification of the palliative phase in patients with chronic obstructive pulmonary disease (COPD) and heart failure (HF) remains challenging. Timely identification enables recognition of palliative c...
BACKGROUND: Early identification of the palliative phase in patients with chronic obstructive pulmonary disease (COPD) and heart failure (HF) remains challenging. Timely identification enables recognition of palliative care needs and the initiation of comprehensive palliative care, yet it often occurs too late. Because most patients with COPD and HF spend the majority of their disease trajectory at home, recognition within community care is essential to anticipate needs and maintain quality of life. Globally, only 14% of people needing palliative care receive it. In primary care, existing screening tools are seldom used, leaving identification dependent on professional judgment. Machine learning (ML) offers a promising approach for detecting patterns in routinely collected health data to support earlier, more consistent identification of palliative care needs. This study aimed to identify and prioritize signs and symptoms indicating the transition to the palliative phase in patients with COPD or HF to inform the development of a ML-model supporting primary home-based care nurses in timely recognition of palliative care needs. METHODS: This mixed-methods study, in two home-based care organizations, comprised four phases: (1) semi-structured interviews with nine home-based nursing professionals; (2) rapid review of 13 studies on COPD and HF palliative signs and symptoms; (3) two multidisciplinary focus groups with 18 professionals; and (4) a survey among 115 home-based nursing professionals to validate and prioritize signs and symptoms. Qualitative data were thematically analysed, and survey data were analysed descriptively. RESULTS: Deterioration was identified as a multidimensional process across physical, psychological, social, and spiritual domains, accompanied by increasing care needs. Physical deterioration involved worsening symptoms and functional decline, while psychological and social domains reflected anxiety, withdrawal, and growing dependence, often noted by informal caregivers. The spiritual domain encompassed existential distress and loss of meaning. Increasing care needs were reflected in higher service use, unplanned interventions, and hospital admissions. Findings across study phases were integrated to prioritize key signs and symptoms for home-based nursing practice. CONCLUSIONS: This study identified and prioritized signs and symptoms used by home-based nurses to recognize the palliative phase in patients with COPD and HF. These findings form the basis for a practice-oriented ML model supporting timely identification of palliative care needs and comprehensive home-based palliative care.
Children's palliative care in Ghana: a situational analysis.
Downing J, Adongo EA, Kuma-Aboagye P … +7 more , Renner LA, Salifu N, Paintsil V, Odiko-Ollennu WA, Daniels A, Chambers L, Sekyere BO
BMC Palliat Care · 2026 Mar · PMID 41840635 · Full text
BACKGROUND: There is a growing recognition of the worldwide unmet need for children's palliative care (CPC) with over 21 million children globally needing access to palliative care. This unmet need means that children ar...
BACKGROUND: There is a growing recognition of the worldwide unmet need for children's palliative care (CPC) with over 21 million children globally needing access to palliative care. This unmet need means that children are subject to needless suffering and that their families are lacking the care and support that they need. Thus, the first ever CPC situational analysis was undertaken in Ghana to assess the need for CPC, along with current provision in Ghana, in order to make recommendations for service development. METHODS: A qualitative approach was used. Two focus group discussions were held with 21 participants, followed by 17 interviews with a view to understanding the current situation for CPC in Ghana, the challenges for provision and to make recommendations for future developments. RESULTS: Three overall themes, with associated sub-themes were identified: (1) CPC in Ghana, which included: understanding of palliative care; the background; need for CPC; and funding. (2) The WHO Conceptual model, which included: empowered communities; health policy; research; access to medicines; education and training; and service provision. (3) Going Forward, which included: challenges, commitment, roles and recommendations. Recommendations are aimed at: the Ministry of Health and Ghana Health Services; hospitals and service providers; education providers; researchers; and donors. CONCLUSION: There was widespread commitment for the development of CPC, with this study providing a baseline for CPC development, building the evidence base and providing insight into CPC development and it's challenges within Ghana. The recommendations provide a roadmap for CPC development aligned with Ghana's five-year palliative care strategy. Implementing these recommendations can transform CPC in Ghana, ensuring that all children in need, and their families, receive high-quality care that improves quality of life and reduces suffering.
Feasibility and acceptability of "LiCPain" pilot randomised controlled trial of continuous subcutaneous infusion of lidocaine or placebo for people with neuropathic cancer pain: a qualitative study of patient and carer perceptions and experiences.
Lee JT, Agar M, Phillips JL … +22 more , Rao A, Huang E, Ritchie M, Fazekas B, Vandersman P, Aggarwal G, Mittal D, Sheehan C, Aggarwal R, Seah D, Kow M, George R, Chye R, Linton A, Noble B, Currow D, Ayoub C, Urban K, Sanderson C, Butcher BE, McLachlan A, Lovell MR
BMC Palliat Care · 2026 Mar · PMID 41840561 · Full text
BACKGROUND: Optimal intervention and clinical trial designs require consumer contributions. The experience of people with advanced cancer and palliative care needs in neuropathic pain trials is seldom reported. METHODS:...
BACKGROUND: Optimal intervention and clinical trial designs require consumer contributions. The experience of people with advanced cancer and palliative care needs in neuropathic pain trials is seldom reported. METHODS: This exploratory descriptive qualitative sub-study aimed to understand the experience of patients and carers participating in the Lidocaine for Neuropathic Cancer Pain (LiCPain) study, a pilot randomised controlled trial of continuous subcutaneous infusion of lidocaine hydrochloride or placebo over 72 h in people with unrelieved neuropathic cancer pain. All participants enrolled in the trial, conducted at five Australian palliative care inpatient sites, were intended to be invited to participate at the time of consenting to the main study. Reasons for not being invited, consenting to or completing the interview sub-study were not collected. A single face-to-face or telephone interview was audio recorded by the site study team nurses or doctors using a semi-structured interview guide. Data were analysed following Braun and Clarke thematic analysis approach. RESULTS: Out of 17 participants randomised to the LiCPain trial, seven participants and one carer consented to participate in the qualitative sub-study. Three major themes were identified: • Trial participation offered a sense of hope and purpose; • The impact of the intervention has multiple contributing factors; and • Pain impacts every aspect of life. CONCLUSIONS: Participants found hope and purpose in the Lidocaine for Neuropathic Cancer Pain trial. Contextual factors influenced perceived effectiveness. These findings will inform future intervention designs and clinical trials to improve outcomes for people experiencing unrelieved neuropathic cancer pain. TRIAL REGISTRATION: This trial was registered in the Australian New Zealand Clinical Trials Registry (ACTRN12617000747325) on 22nd May 2017.
Exploring the influencing factors of spiritual well-being in patients with advanced cancer undergoing chemotherapy: a latent profile analysis.
Tang A, Liao H, Zeng H … +9 more , Zheng Y, Li Q, Li F, Xiao T, Zhou L, Wu J, He B, Tang N, Chen X
BMC Palliat Care · 2026 Mar · PMID 41840382 · Full text
BACKGROUND: Spiritual well-being (SWB) is an integral component of palliative and holistic care for patients with advanced cancer undergoing chemotherapy. However, its latent characteristics have not been fully explored....
BACKGROUND: Spiritual well-being (SWB) is an integral component of palliative and holistic care for patients with advanced cancer undergoing chemotherapy. However, its latent characteristics have not been fully explored. OBJECTIVES: This study aimed to identify latent profiles of spiritual well-being (SWB) among patients with advanced cancer undergoing chemotherapy and to examine the factors influencing profile membership. DESIGN: Cross-sectional study. METHODS: The study was conducted from February to June 2025 in the oncology departments of three Grade-A tertiary hospitals in Southwest China, involving 318 patients with advanced cancer undergoing chemotherapy. Data were collected using the Demographic Information Questionnaire, the Functional Assessment of Chronic Illness Therapy Spiritual Well-being Scale (FACIT-Sp), the Hospital Anxiety and Depression Scale (HADS), the Comprehensive Scores for Financial Toxicity Based on the Patient-reported Outcome Measures (COST-PROM), and the Family APGAR Index. Descriptive statistics, latent profile analysis, univariate analysis, and multivariate logistic regression were employed to identify latent profiles of SWB and their influencing factors. RESULTS: The SWB of patients with advanced cancer undergoing chemotherapy was categorized into three latent classes: “Low SWB Group” (28.9%), “Moderate SWB Group” (36.5%), and “High SWB Group” (34.6%). Marital status, residence, monthly household income per capita, payment method for medical expenses, anxiety and depression, FT, and family function were identified as significant factors influencing different levels of SWB (P < 0.05). CONCLUSION: Patients with advanced cancer undergoing chemotherapy showed marked heterogeneity in SWB, which could be classified into three latent profiles. These findings suggest that healthcare providers may use a biopsychosocial (BPS) framework to guide stratified supportive care tailored to profile-specific factors, integrating symptom management with psychosocial, family, and spiritual support as well as resource linkage, to better address patients’ diverse needs and potentially improve overall well-being.
Patient, family, and healthcare provider experiences in advance care planning: a qualitative study.
Pimsen A, Punaglom N, Taweesuwanakrai A … +5 more , Winyoohatthakit W, Winitchayothin S, Ruangjiratain S, Wirojratana V, Rifai A
BMC Palliat Care · 2026 Mar · PMID 41832457 · Full text
BACKGROUND: Advance care planning (ACP) aligns care with patients’ values and improves end-of-life outcomes. Yet uptake remains limited and frequently crisis-triggered, particularly in collectivist contexts where family...
BACKGROUND: Advance care planning (ACP) aligns care with patients’ values and improves end-of-life outcomes. Yet uptake remains limited and frequently crisis-triggered, particularly in collectivist contexts where family interdependence and emotional tolerance shape participation. Empirical understanding of how ACP is experienced across patients, families, and healthcare providers in non-Western settings remains limited. OBJECTIVE: To explore how patients, family caregivers, and healthcare providers experience and negotiate participation in ACP within a Thai palliative care context. DESIGN: Qualitative study using reflexive thematic analysis. SETTING: A university hospital in Bangkok, Thailand. PARTICIPANTS: Thirty participants: 10 patients with life-limiting illness, 10 family caregivers, and 10 healthcare providers. METHODS: Semi-structured interviews were conducted at a palliative care center between January and October 2025. Interviews were transcribed verbatim, translated using meaning-based equivalence, and analyzed inductively using reflexive thematic analysis. RESULTS: Four themes (10 subthemes) conceptualized ACP as a relationally negotiated, culturally embedded practice. (1) Timing and pathways: emotional, familial, and structural readiness shaped when ACP became possible, most often during clinical crises. (2) Values and visions of a good death: comfort, peace, and minimizing burden guided preferences, while caregiving and resource constraints limited feasibility. (3) Communication as relational positioning in ACP: gentle honesty and paced disclosure fostered engagement; decisions were negotiated within family circles; physicians typically initiated ACP, while nurses sustained relational continuity. (4) Structural conditions shaping the possibility of ACP: hierarchy, workload, limited training, and constrained community support restricted proactive implementation, reinforcing reactive patterns. CONCLUSION: ACP in this context functions as a relationally negotiated practice contingent upon alignment across emotional, familial, and structural readiness. Crisis initiation reflects misalignment across these domains rather than cultural resistance alone. Strengthening culturally attuned communication, family-centered engagement, interdisciplinary role clarity, and structural support may enable earlier and sustained ACP dialogue.
A cognitive accessibility review of national palliative care resources with people with cognitive disabilities.
Er-Raji N, Tahir M, Martin L
BMC Palliat Care · 2026 Mar · PMID 41826970 · Full text
BACKGROUND: People with cognitive disabilities (including developmental disabilities and dementia) face significant inequities in accessing palliative care information and services. Accessible communication plays a criti...
BACKGROUND: People with cognitive disabilities (including developmental disabilities and dementia) face significant inequities in accessing palliative care information and services. Accessible communication plays a critical role in enabling meaningful participation in care, yet few national palliative care resources are evaluated with direct input from people with lived experience. METHODS: A qualitative descriptive study engaged eight individuals with lived experience of cognitive disabilities as cognitive accessibility experts. These individuals reviewed three palliative care resources (in English or French) and participated in semi structured virtual interviews. Data were analyzed to identify accessibility challenges, strengths of resources, and actionable recommendations. RESULTS: The analysis revealed challenges such as dense vocabulary, abstract phrasing, and inconsistent sequencing. At the same time, cognitive accessibility experts by experience identified strengths, including plain-language sections, clear segmentation, simple visual layouts, and useful questions to ask healthcare providers. In particular, their comments praised the organization, straightforwardness, and readability. Based on these insights, cognitive accessibility experts by experience recommended simplifying language, improving clarity and structure, adding concrete examples, and incorporating more direct communication prompts. Health Canada has already begun revising the resources in response to these recommendations, demonstrating real-world impact. CONCLUSIONS: Cognitive accessibility depends on how the information is designed, not on the person reading it. Involving people with cognitive disabilities as research partners strengthens both the ethical foundation and practical utility of palliative care communication. Co-designed, cognitively accessible resources are essential to support autonomy, shared decision-making, and equitable palliative care access for all.
Specialist palliative care in different intensive care unit populations: a retrospective longitudinal study.
Tenge T, Bosbach L, Schallenburger M … +12 more , Stefaniak M, Schwartz J, Feit S, Meier S, M Pembele R, Stroda A, Roth S, Gaertner J, Kram R, Jung C, Kindgen-Milles D, Neukirchen M
BMC Palliat Care · 2026 Mar · PMID 41826954 · Full text
BACKGROUND: Integration of specialist palliative care (PC) in intensive care units (ICUs) is recommended but remains underutilized. Understanding differences among ICU populations (i.e., medical vs. surgical) is crucial...
BACKGROUND: Integration of specialist palliative care (PC) in intensive care units (ICUs) is recommended but remains underutilized. Understanding differences among ICU populations (i.e., medical vs. surgical) is crucial to overcome barriers and guide optimized care. METHODS: Retrospective longitudinal analysis of surgical, medical-neurological and COVID-19 ICU patients receiving specialist PC consultations at a tertiary care center between 2018 and 2022. Measures and outcomes included patient characteristics, timing of PC involvement, PC triggers according to ICU and PC teams, multi-dimensional symptom assessments and care trajectories. RESULTS: 518 cases were included, 268 (51.7%) from surgical, 174 (33.6%) from medical-neurological and 76 (14.7%) from COVID-19 ICUs. 39.0% of patients (mean age 67 years, 38.6% female) had cancer, pronounced in the surgical population, while medical ICU patients were older and more often female. The first PC encounter was in median 5 (interquartile range [IQR] 1-14) days after ICU admission with an ICU length of stay of 11 (IQR 5-26) days. ICU mortality was 77.2%, hospital mortality 87.6% with 11.6% of all patients were admitted to PC unit. While ICU teams predominantly saw malignancy, lack of curative treatment options and the need to care for next-of-kin as PC triggers, the PC teams mainly the need to care for next-of-kin and symptom burden. In the surgical ICU, malignancy was more often present as a trigger (maximum standardized mean difference [mSMD]: 0.676), for the medical ICU no curative options (mSMD: 0.256) and cardiopulmonary resuscitation (mSMD: 0.375). Symptom assessment regarding pain (mSMD: 0.676), depressive mood (mSMD: 0.552) and dyspnea (mSMD: 0.468) differed between ICU populations. 28.6% of patients had advance directives (p = 0.16 between ICUs), 48.1% a power of attorney (p = 0.22 between ICUs). CONCLUSIONS: In this pandemic-era cohort, ICU patients receiving specialist PC showed high mortality and symptom burden but differed regarding PC triggers and symptom assessments between ICUs. Further, perceptions of PC triggers and symptoms vary between ICU and PC teams. Future studies in non-pandemic settings are needed to determine the broader applicability of these observations.
Developing information material to support the assessment of palliative care needs in dementia: a qualitative participatory approach.
Gesell D, Wikert J, Hriskova K … +2 more , Veliqi A, Bausewein C
BMC Palliat Care · 2026 Mar · PMID 41826944 · Full text
BACKGROUND: There are approximately 1.8 million people living with dementia in Germany, of whom many present with a wide range of symptoms and needs. The assessment of these symptoms is often challenging for nursing staf...
BACKGROUND: There are approximately 1.8 million people living with dementia in Germany, of whom many present with a wide range of symptoms and needs. The assessment of these symptoms is often challenging for nursing staff in long-term care settings. The dementia-specific version of the Integrated Palliative Outcome Scale (IPOS-Dem) can support this assessment by enabling the timely identification of the needs of people living with dementia. To facilitate the use of IPOS-Dem, a user-friendly manual is required. The aim of this study is therefore to develop information material for assessing palliative care needs among people living with dementia through an iterative and participatory process tailored to professional caregivers, and to explore the content requirements of these materials from the caregivers’ perspective. METHODS: A multi-stage qualitative study involving a Patient and Public Involvement (PPI) group and a focus group with professionals was conducted. The manual was developed through an iterative and participatory process, which included revision based on input from the PPI group and the validation of the final version in a structured focus group discussion. The data was analyzed using Mayring’s qualitative content analysis. RESULTS: The PPI group consisted of three, the focus group of seven people (median age = 51 years; median work experience = 29 years). Feedback from the discussions encompassed themes that were incorporated into the revised version of the manual, including reducing continuous text, adding graphical elements to improve readability, revising the layout, and refining the case example to describe observable differences in a more concrete way. Linguistic revisions, such as simplifying and shortening phrasing, as well as making the manual more engaging and motivating, were also implemented. The manual was rated by the participating professionals as helpful and practice-oriented, supporting the systematic assessment of palliative care needs. CONCLUSIONS: The participatory and iterative development process ensured that the manual reflects the practical needs and perspectives of professional caregivers, thereby enhancing its relevance and acceptance in dementia care.
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