BMC Palliative Care[JOURNAL]
Sun
200 papers
Trends and factors associated with hospice care utilization and place of death in the United States between 2002 and 2020: a retrospective data analysis based on the health and retirement study.
Long Y, Tan M, Xia Q … +2 more , Xu Z, Ding J
BMC Palliat Care · 2026 Mar · PMID 41772535 · Full text
AIM: To examine trends in hospice service use and distribution of place of death, as well as their associated factors in the United States (US). METHODS: A retrospective data analysis based on the US Health and Retiremen...
AIM: To examine trends in hospice service use and distribution of place of death, as well as their associated factors in the United States (US). METHODS: A retrospective data analysis based on the US Health and Retirement Study between 1st January 2002 to 31st December 2020. RESULTS: Our analysis included 12,784 deaths, of which 3,347 (26.18%) received hospice care in the last two years of life. Hospice utilization during this period rose sharply from 6.30% in 2002 to 51.44% in 2020; however, persistent disparities in hospice use were observed among non-cancer patients and rural populations. Concurrently, hospital deaths declined from 42.23% to 26.25%, with corresponding increases in deaths at private homes (from 28.35% to 33.44%) and in hospice facilities (from 4.16% to 10.59%). Compared with hospital deaths, hospice recipients were substantially more likely to die in hospice facilities (RRR = 1748.11, 95% CI 1070.97-2853.37, P < 0.001), at home (RRR = 5.41, 95% CI 4.52–6.47, P < 0.001), or in nursing homes (RRR = 4.17, 95% CI 3.46–5.04, P < 0.001). CONCLUSION: Hospice care utilization increased markedly between 2002 and 2020, reflecting broader acceptance of palliative care and contributing to a shift from hospital deaths to deaths at home or in hospice settings. Persistent disparities in hospice use among non-cancer patients and rural populations, together with the uncertain impact of expanded hospice availability on care quality beyond place of death, warrant further investigation.
Translation and multi-site validation of the 'Pediatric Complex Care Needs Assessment Scale' (ACCAPED) from Italian to English.
Sadler K, Callaghan S, AlSawafi A … +12 more , Rayala S, Alghamdi W, Marinetto A, Lazzarin P, Khan S, AlGhamdi K, Ahmad F, Alhuthil R, Alyami HH, Al-Dabbous T, AlHarrasi N, AlBattashi M
BMC Palliat Care · 2026 Mar · PMID 41772533 · Full text
BACKGROUND: Few tools exist to assess the palliative care needs of children with serious illnesses. One such tool is the Pediatric Complex Care Needs Assessment scale (ACCAPED), developed by a group of pediatric palliati...
BACKGROUND: Few tools exist to assess the palliative care needs of children with serious illnesses. One such tool is the Pediatric Complex Care Needs Assessment scale (ACCAPED), developed by a group of pediatric palliative care experts in Italy. It evaluates care complexity across 11 clinical domains to categorize palliative care needs into three levels: low, moderate, and high. AIM: This study aimed to translate and validate the Pediatric Complex Care Needs Assessment scale (ACCAPED) from Italian into English. DESIGN: The methodology included (1) translation, (2) expert panel validation, (3) end-user validation, (4) expert panel review, and (5) multi-site validation with a sample of children with various conditions and needs from Saudi Arabia, Kuwait, and Oman (N = 199). RESULTS: During the translation and validation process, optimization strategies were employed to improve the scale’s psychometric properties, including adjusting the weighting of the clinical needs domain, modifying the complexity category thresholds, adding three items, and removing 16 items, thereby enhancing the scale’s construct validity. Using a regression model, factors such as mobilization, pain, instability, and skin integrity were identified as significant influences on expert judgments of patient complexity. Like the original, the translated English version contains 11 domains. CONCLUSION: The English Modified-ACCAPED scale appears to be a practical tool for screening for palliative care needs in children with potentially life-limiting conditions and for guiding them early in their disease trajectory toward appropriate resources. However, future research is recommended to strengthen its psychometric properties.
Understanding multilevel influences on the adaptation of a complex intervention for oncology to palliative care transitions: a qualitative study across seven European countries.
Radojičić T, Belar A, Preston N … +9 more , Payne S, Surges SM, Hurducas F, Leppert W, Koper I, MartinsPereira S, Fülöp B, Hasselaar J, Arantzamendi M
BMC Palliat Care · 2026 Feb · PMID 41764492 · Full text
BACKGROUND: Adapting complex healthcare interventions for use across diverse healthcare systems requires balancing fidelity to core components with responsiveness to local contexts. The Pal-Cycles project aims to support...
BACKGROUND: Adapting complex healthcare interventions for use across diverse healthcare systems requires balancing fidelity to core components with responsiveness to local contexts. The Pal-Cycles project aims to support transitions in care for patients with advanced cancer across seven European countries. Understanding the multilevel factors that influence adaptation is essential to ensure contextual fit while maintaining intervention integrity. AIM: To explore the multilevel factors that influenced the adaptation of the Pal-Cycles intervention across seven European countries. METHODS: A qualitative study was conducted with purposively sampled country lead team members from all participating countries. Data were derived from focus groups, in which participants reflected on and discussed their experiences of cross-country adaptation meetings, and were analysed using framework analysis. RESULTS: Fourteen country lead team members participated in the study. Analysis identified five areas reflecting multilevel factors that influenced the adaptation of the Pal-Cycles intervention: (1) Organisational variability as a barrier to adapting the Pal-Cycles intervention, (2) Disparities in training and shared motivation to improve palliative care communication, (3) Multidisciplinary collaboration shaped by organisational and cultural contexts, (4) Balancing optimism and practical constraints: stakeholder views on the Pal-Cycles intervention, (5) Working together to adapt the Pal-Cycles intervention across cultures. Organisational variability influenced service availability, integration between oncology and palliative care, and communication pathways. Disparities in previous training and shared motivation shaped clinicians' engagement with the intervention's training component. Multidisciplinary collaboration varied across settings, affecting role clarity and coordination among healthcare professionals. Stakeholder perspectives, including those of cancer clinicians, general practitioners, and consortium members, informed decisions about which elements of the intervention were most relevant in each context. Finally, working together to adapt the intervention across diverse cultural and organisational settings involved iterative discussions that balanced flexibility with preservation of the intervention's core components. CONCLUSION: The adaptation of Pal-Cycles was shaped by interrelated organisational, professional, and cultural factors. Recognising how local contexts influence the prioritisation and operationalisation of intervention components is essential for achieving a balance between standardisation and flexibility in cross-national healthcare interventions.
Interprofessional KOPAL case conferences on patients with non-oncological palliative care needs - a qualitative analysis of interaction.
Weber JP, Müller C, Pohontsch NJ … +7 more , Böttcher S, Sekanina U, Schade F, Hummers E, Scherer M, Marx G, Stiel S
BMC Palliat Care · 2026 Feb · PMID 41749218 · Full text
BACKGROUND: In Germany, patients with chronic non-malignant diseases (CNMD) are predominantly treated by general practitioners (GPs). Yet, little is known about communication between GPs and specialist palliative home ca...
BACKGROUND: In Germany, patients with chronic non-malignant diseases (CNMD) are predominantly treated by general practitioners (GPs). Yet, little is known about communication between GPs and specialist palliative home care (SPHC) teams in terms of care needs and care planning for patients. Our analysis therefore aims at GPs´, SPHC nurses’ and SPHC physician’s interaction during case conferences (CCs) on patients with CNMD following an initial comprehensive palliative care consultation. METHODS: A total of 78 CCs were conducted between January 2020 and March 2021 by telephone and recorded by non-participating observers using pre-categorized protocol forms. Content, course and patterns of communication of the participating 25 GPs, 16 SPHC nurses and 11 SPHC physicians are investigated by secondary document analysis with methodical reference to Kuckartz’s structuring content analysis. RESULTS: CCs were characterized by a cooperative and welcoming atmosphere, focussing on the patient’s situation. CCs were mainly started and facilitated by the SPHC nurses. Most GPs showed great interest in nurses’ narrations and suggestions for improvement. GPs received important new information about their patients in some CCs. SPHC physicians mainly addressed medication regimens and emergency prevention. CONCLUSIONS: CCs’ participants interacted constructively in a positive atmosphere on an equal level. SPHC nurses hold a central role. We conclude that interprofessional CCs might support the improvement of health care of chronically ill patients by common reflection and the development of therapy goals and care plans. Increased structuring of CCs might trigger more specific treatment plans. TRIAL REGISTRATION: KOPAL is registered on the German clinical trial register “Deutsches Register Klinischer Studien (DRKS)” (registration number DRKS00017795 17 November 2021, V.05).
Top of the license practice or out of our scope? A qualitative analysis of social workers' role in cultivating prognostic awareness on hospital palliative care teams.
O'Donnell AE, Wensley TB, Gonyea JG
BMC Palliat Care · 2026 Feb · PMID 41742142 · Full text
OBJECTIVE: Prognostic awareness, defined as patients’ understanding of their illness trajectory and likely prognosis, is an essential component of informed decision-making, values-based care planning, and high-quality pa...
OBJECTIVE: Prognostic awareness, defined as patients’ understanding of their illness trajectory and likely prognosis, is an essential component of informed decision-making, values-based care planning, and high-quality palliative care. Although discussing prognosis is traditionally viewed as a physician-led task, palliative social workers (PSWs) are often involved in interventions that require prognostic understanding. Little is known, however, about the role social workers play in cultivating prognostic awareness, the professional boundaries surrounding prognostic discussions, and how PSWs’ engagement in this work is understood within interprofessional palliative care teams. METHODS: This qualitative study used Interpretive Description, an applied analytic approach designed to generate practice-relevant understanding grounded in participants’ experiential accounts. Semi-structured interviews were conducted with 17 advanced-practice (APHSW-certified) palliative social workers and 16 palliative physicians practicing in U.S. hospital settings. Inductive thematic analytic techniques were used to identify patterned understandings across participants’ accounts. Role theory was used as a sensitizing framework to support interpretation of interprofessional expectations, boundaries, and dynamics related to cultivating prognostic awareness. RESULTS: Across professions, participants described cultivating prognostic awareness as an iterative, team-based process within inpatient palliative care. PSWs were described as extending and deepening physician-initiated conversations by reinforcing prognostic information, exploring lived experience, and supporting emotional processing. Clear professional boundaries were articulated around prognostic formulation, initial time-based disclosure, and medically complex decision-making, which were widely viewed as physician led. Role tensions emerged when workflow pressures, clinical urgency, or team expectations pushed PSWs toward medically focused conversations, or when primary teams assumed PSWs could independently deliver prognostic information. Interprofessional trust, communication, and team alignment shaped whether PSWs were supported to engage fully in this work. CONCLUSIONS: Engagement in cultivating prognostic awareness is widely viewed as top-of-license practice for specialty-trained PSWs when grounded in their psychosocial expertise, communication skills, and collaboration with physicians. Role agreement, organizational support, and interprofessional trust are essential for enabling PSWs to practice within their scope while maximizing their unique contributions to patient and family prognostic understanding.
The decision-making process for sedation in specialist palliative care: a qualitative interview study with team members, relatives, and patients.
Handtke V, Meesters S, Bazata J … +7 more , Schildmann J, Bozzaro C, Ostgathe C, Bausewein C, Klein C, Schildmann E, SedPall Study Group
BMC Palliat Care · 2026 Feb · PMID 41736057 · Full text
BACKGROUND: The decision-making process for sedation in palliative care remains under-researched, with evidence of limited involvement of patients and their relatives despite guidelines. The aim of this study was to expl...
BACKGROUND: The decision-making process for sedation in palliative care remains under-researched, with evidence of limited involvement of patients and their relatives despite guidelines. The aim of this study was to explore the decision-making process for sedation in specialist palliative care in Germany, including all types of sedation (light to deep, temporary or continuous (until death)). METHODS: Qualitative semi-structured interviews with 26 physicians, 22 nurses, eleven other members of the multiprofessional care team, eight relatives, and six patients. Recruitment took place via contact person in ten palliative care units and seven specialist palliative home care services in Germany. We analysed the transcripts by Framework Analysis and applied the shared treatment decision-making model by Charles et al. RESULTS: Findings could be assigned to the adapted 5-phase decision-making process: (1) In the initiation phase, preemptive discussions were typically limited to patients with chronic diseases or potential catastrophic events, with some physicians avoiding early discussions due to fears of pressure. (2) During information exchange, the amount of detail varied by sedation type, with often only little information given for mild forms. (3) In the deliberation phase, informed consent was more common for deep sedation, and some team members criticized inadequate documentation of consent. (4) Decisions to start sedation were usually collaborative, though challenges arose when there was no defined starting point for deep sedation. (5) Re-evaluation was partly described to be challenging due to concerns about reintroducing suffering if sedation was reduced. CONCLUSIONS: This study highlights the processual nature of the decision-making process for sedation in palliative care and proposes re-evaluation as a fifth phase. It underscores the importance of early communication, addressing professionals’ concern, and supporting shared decision-making throughout all phases.
Identification and mapping of mHealth interventions applied in palliative care in Sub Saharan Africa: a scoping review.
Ndinawe JB, Kabakyenga J, Namukwaya E … +2 more , Mulogo EM, Nagujja F
BMC Palliat Care · 2026 Feb · PMID 41735988 · Full text
BACKGROUND: Although palliative care is very essential for improving quality of life (QOL) by providing relief from pain and other distressing symptoms, its coverage in sub Saharan Africa remains remarkably low. Utilizat...
BACKGROUND: Although palliative care is very essential for improving quality of life (QOL) by providing relief from pain and other distressing symptoms, its coverage in sub Saharan Africa remains remarkably low. Utilization of mHealth could be a fundamental healthcare system strengthening approach to enhance and promote palliative care in the region. There is paucity of evidence regarding evidence on the use of these interventions in SSA because it is a relatively new concept in the region. Therefore, there was need to identify and map the available/ applied mHealth interventions for palliative care in SSA basing on published and grey literature. AIM: To examine the nature and use of mHealth interventions for palliative care and factors influencing their use in sub Saharan Africa (SSA). METHODS: The review was based on the JBI methodology for scoping review. PUBMED, CINAHL, Embase and Google Scholar databases were searched for published articles with no time restrictions. Unpublished and grey literature was also searched for. Data was extracted from the retrieved sources and synthesized. The findings were reported using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) in a comprehensive and transparent way. RESULTS: A total of 224 articles were identified and 35 of these met the inclusion criterion and were considered for the review. The results show use of mHealth interventions for palliative care in 12 countries of the SSA. Only 12 (35.3%) were app-based, 9(26.5%) were SMS-text-based, 4(11.8%) were telemedicine-based,5(14.7%) were phone call-based, 3(8.8%) were mixed while 1(2.9%) used wearable-sensor-based mHealth interventions. Key uses of mHealth interventions in palliative care included health strengthening, psychosocial support to patients and families, enhancement of compliance to appointments for patients, promotion of adherence to medication, health education, monitoring, evaluation and research and capacity building for palliative care health professionals. A number of influencing factors were identified and they included wide-spread telephone ownership and access, great robustness of telephone and internet connectivity, high degree of perceived usefulness and ease of use, feasibility and acceptability of mHealth. Also, vital barriers such as low levels of technological advancement/expertise, irregularity and paucity of electric power supply, high likelihood to compromise patients' privacy and confidentiality and high illiteracy rates among the population were articulated by the articles. CONCLUSION: About a quarter of SSA countries have incorporated mHealth interventions for palliative care, underscoring the need for further research and development of the technologies. These approaches are quite beneficial to SSA, where there is a disproportionate disease burden and an inadequate healthcare system.
In-person when necessary and available, remotely when possible - How telemedicine can support palliative care for persons with Parkinson's disease: a qualitative study.
van den Bergh R, Muente C, van Barschot P … +2 more , Bloem BR, Meinders MJ
BMC Palliat Care · 2026 Feb · PMID 41731460 · Full text
BACKGROUND: Essential components of optimal palliative care for people with Parkinson’s disease (PD) include adequate access and timely initiation of palliative care conversations. However, care for people with PD faces...
BACKGROUND: Essential components of optimal palliative care for people with Parkinson’s disease (PD) include adequate access and timely initiation of palliative care conversations. However, care for people with PD faces several challenges, including limited access, time constraints for healthcare professionals, cognitive decline, and emotional barriers around end-of-life discussions. Telemedicine may help address some of these challenges. This study explored how telemedicine could support palliative care for people with PD from the perspectives of people with PD, family caregivers, and healthcare professionals. METHODS: Conducted alongside the European PD_Pal project, this qualitative study explored how telemedicine could support different aspects of palliative care for people with PD. Between September 2022 and January 2023, we interviewed 58 stakeholders. Participants were primarily recruited from the Netherlands, but also from France, Germany, Greece, Italy, Sweden, and the United Kingdom, including 15 people with PD, six family caregivers, and 37 healthcare professionals. The semi-structured interview guide was co-created with a patient advisor panel and addressed remote communication, remote monitoring, and online education information provision. Data were analysed using thematic analysis. RESULTS: We identified four themes describing how telemedicine can support palliative care for people with PD. (1) Talking about palliative care remotely enhanced access for people with PD and their family caregivers but reduced emotional connection due to the loss of physical proximity. (2) Gaining a complete picture of the person with PD remained dependent on in-person examinations, while remote monitoring offered complementary at-home data of variable perceived usefulness. (3) Transferring knowledge about palliative care was facilitated by online platforms that improved communication and coordination among healthcare professionals and provided trustworthy, understandable, and up-to-date information for people with PD and family caregivers. (4) Prerequisites for successful implementation included addressing barriers such as low digital literacy, advanced age, and cognitive decline, whereas proactive engagement and independence facilitated telemedicine. Participants also highlighted privacy, ethical, and financial concerns. CONCLUSIONS: Participants generally preferred to discuss palliative care topics in person, but remote consultationscan sustain someone’s access to care when an in-person visit is no longer possible or feasible. Telemedicine waswelcomed for transferring palliative care knowledge between healthcare professionals and to people with PD andfamily caregivers.
End-of-life circumstances and unanticipated deaths in a neonatal intensive care unit: a retrospective analysis.
Perenyi C, Cambonie G, Durand S … +4 more , Lahaye FV, Gaudaire A, Milesi C, Gavotto A
BMC Palliat Care · 2026 Feb · PMID 41731424 · Full text
BACKGROUND: Despite major advances in neonatal intensive care, mortality in neonatal intensive care units (NICUs) remains a persistent reality. Most deaths now occur after withholding or withdrawing life-sustaining thera...
BACKGROUND: Despite major advances in neonatal intensive care, mortality in neonatal intensive care units (NICUs) remains a persistent reality. Most deaths now occur after withholding or withdrawing life-sustaining therapies (WWLST), yet some remain sudden or unanticipated. Understanding how and under which circumstances infants die is essential to improving anticipatory communication, ethical consistency, and family-centered support in neonatal end-of-life (EOL) care. METHODS: We conducted a retrospective study including all infants who died in the tertiary NICU of Montpellier University Hospital, France, between May 2022 and May 2025. Demographic, perinatal, clinical, and end-of-life data were extracted from medical records. Deaths were classified as anticipated (following WWLST) or unanticipated (without WWLST). Statistical comparisons explored factors associated with unanticipated deaths. RESULTS: Among 870 NICU admissions, 105 infants (12%) died. Mortality was concentrated in three groups: very premature infants (< 29 weeks' gestation, 55%), infants with severe congenital or early-onset conditions (26%), and those with hypoxic-ischemic encephalopathy (19%). Seventy-six infants (72%) died after a WWLST decision-most often for poor neurological prognosis or perceived futility of care-whereas 23 (22%) died without a prior WWLST decision. Unanticipated deaths were mainly associated with multi-organ failure (≥ 3 organs 65% vs 40%; p=0.02), predominantly cardiovascular or respiratory failure, shorter illness trajectories (1 vs 6.5 days from complication to death; p<0.01), and reduced parental presence during EOL care (52% vs 80%; p<0.01), including fewer opportunities for parents to be present and to hold their infant at the time of death. CONCLUSIONS: In this tertiary NICU, most deaths were anticipated and occurred following structured WWLST processes. Unanticipated deaths primarily reflected rapid clinical deterioration and were associated with more abrupt and less family-centered end-of-life circumstances. These findings underscore the importance of early recognition of dying trajectories and timely multidisciplinary discussions to support anticipatory, compassionate, and parent-centered end-of-life care in the NICU. Strengthening education in neonatal ethics and palliative care may foster more consistent, compassionate, and anticipatory EOL practices.
Barriers and enablers of implementing spiritual care at the end of life: a mixed-methods systematic review using the theoretical domains framework.
Tang R, Li F, Wei S … +5 more , Zhao F, Lin J, Pang C, He Y, You X
BMC Palliat Care · 2026 Feb · PMID 41724946 · Full text
OBJECTIVES: This systematic review aims to identify and synthesize current evidence on perceived barriers and enablers of implementing spiritual care in palliative care to end-of-life patients using the Theoretical Domai...
OBJECTIVES: This systematic review aims to identify and synthesize current evidence on perceived barriers and enablers of implementing spiritual care in palliative care to end-of-life patients using the Theoretical Domains Framework (TDF). METHODS: Reviewer screened records identified from six electronic databases—PubMed, Embase, CLNAHL, Web of Science, ProQuest and Cochrane library-and published before July 2025. Qualitative and quantitative records reporting data on the perspectives of patients, and healthcare providers towards implementing Spiritual Care at the end of life were included. Using a mixed methods appraisal tool, the quality of the included studies was assessed. Barriers and enablers were identified and then coded into domains of the theoretical domains framework (TDF) using a combination of deductive and inductive qualitative analysis. RESULTS: Twenty-seven studies were included 13 quantitative, 7 qualitative and 7mixed-method studies. Patient perspectives were reported in 7 studies, while healthcare providers’ viewpoints were documented in 23 studies. We identified barriers and enablers in the majority of TDF domains and two other themes that did not fit into the TDF: “Providers’ Spiritual Self-Care and Reflection” and “Provider-patient’ Longitudinal relationships”. There are 16 sub-themes related to barrier factors and 16 sub-themes related to enabler factors. No relevant barriers or enablers were identified in two of the 14 TDF domains-Memory, Attention and Decision Process, and Behavior Regulation, respectively. CONCLUSIONS: This systematic review identified barriers and enablers of implementing spiritual care in palliative care to end-of-life patients. Successful implementation requires a paradigm shift from "end-of-life spiritual rescue" toward longitudinal spiritual integration. Clinicians must recognize their role as behavioral catalysts who bridge the gap between patient latent needs and perceived professional boundaries. Policy efforts should focus on multidisciplinary training, the structural normalization of spiritual metrics in clinical systems, and fostering relational continuity within healthcare delivery models.
Navigating isolation- barriers and multidimensional support needs in symptom self-management for HSCT patients within laminar airflow rooms: a descriptive qualitative study.
Chen Q, Chen J, Li C … +3 more , Fang X, Wu Y, Hu R
BMC Palliat Care · 2026 Feb · PMID 41724942 · Full text
BACKGROUND: Hematopoietic stem cell transplantation (HSCT) is a crucial therapy for hematological malignancies and other conditions. However, the intensive therapy and required isolation place significant physical and ps...
BACKGROUND: Hematopoietic stem cell transplantation (HSCT) is a crucial therapy for hematological malignancies and other conditions. However, the intensive therapy and required isolation place significant physical and psychological burdens on patients. Although effective symptom self-management during isolation is pivotal, the current efforts are often challenged, leading to distress and feelings of loss of control. Nevertheless, research specifically addressing the self-management needs and barriers faced by patients with HSCT confined to laminar airflow rooms is limited. This study aimed to explore the barriers and needs related to symptom self-management among patients in laminar airflow rooms who underwent HSCT. METHODS: A descriptive, qualitative study was conducted. Symptom management theory (SMT) was used as the theoretical framework. Purposive sampling was used to select participants, and 22 patients who were adult HSCT recipients at a large tertiary hospital in Fujian Province, China were recruited. Face-to-face, semi-structured, in-depth interviews were conducted between October 2023 and January 2024 at the Hematopoietic Stem Cell Transplant Center of a large tertiary hospital in Fujian Province, China. The interviews were transcribed verbatim and analyzed using content analysis methods. RESULTS: A total of 22 patients were recruited, leading to the identification of 3 themes and 11 subthemes: (1) limited awareness of symptom self-management: dependency, passive suffering; (2) information acquisition barriers: lack of courage and skills in communication, clinician time constraints, and overwhelming and diverse online information; (3) multidimensional support needs: need for proactive symptom management, timely and effective symptom response need, internal support and self-regulation, longing for family and friends’ support and companionship, peer support, and looking forward to an interactive information platform. CONCLUSIONS: This study has indicated that patients with HSCT in laminar airflow rooms face diverse barriers to symptom self-management and express a strong desire for multidimensional support. These findings emphasise the importance of healthcare providers strengthening proactive symptom education during protective isolation, facilitating family and peer support systems, and exploring the creation of interactive digital platforms. The provision of such comprehensive and personalized support is essential to empower patients in managing their symptoms and to improve their overall quality of life.
Prevalence of acute pain crisis in patients with cancer in Specialist Palliative Care Clinic: An observational study.
Kamble S, Thota RS, Poojary S … +4 more , Deodhar J, M VT, Shah IJ, Ajith A
BMC Palliat Care · 2026 Feb · PMID 41723452 · Full text
BACKGROUND: To evaluate the prevalence of acute pain crisis among cancer patients presenting to an outpatient specialist palliative care clinic. METHODS: This observational study was conducted over six months at a tertia...
BACKGROUND: To evaluate the prevalence of acute pain crisis among cancer patients presenting to an outpatient specialist palliative care clinic. METHODS: This observational study was conducted over six months at a tertiary cancer hospital in India utilizing the ESAS-r and Distress Thermometer tools. Eligible participants were patients aged 18 years or older who attended the Palliative Medicine outpatient clinic with a pain score of 7 or above on the Numerical Rating Scale and a distress score of 4 or higher on the Distress Thermometer. RESULTS: Of the 5,570 patients screened for eligibility, 95 presented with an acute pain crisis, yielding a prevalence of 1.7% (95% CI: 1.38–2.08). The median age of the patients was 50 years (IQR: 40–57), with 54% females and 46% males. The most common cancer sites were the head and neck (20%), followed by gynecological (13.7%), and thoracic/breast/hepatobiliary (10.5%) cancers. The most frequent pain quality descriptors were radiating pain (59%), shooting (49%), electrical or throbbing (44%), pricking (43%), dull aching (38%), burning (27%), tenderness (20%), cramping (17%), and unknown types (2%). The median distress score reported on the Distress Thermometer was 8 (IQR: 6–9). Intravenous fentanyl was the most commonly used analgesic for managing pain crisis, with a median dose of 20 mcg (IQR: 20). The median NRS pain scores were 9 (IQR: 8–10) at 0 minutes, 6 (IQR: 4–7) at 15 minutes, and 3 (IQR: 2–4) at 30 minutes. The reductions in NRS scores at 15 and 30 minutes were 3 and 6 points, respectively. CONCLUSION: To the best of our knowledge, this is the first study aimed at evaluating the prevalence of pain crisis in an outpatient specialist palliative care clinic. Managing an acute pain crisis in such a setting requires a careful balance of timely interventions, appropriate medication use, and strong communication among patients, caregivers, and palliative care physicians. The causes of acute pain crisis were not explored in this study, which represents a potential area for future research. TRIAL REGISTRATION: Clinical Trials Registry India (CTRI) Reg no. CTRI/2024/02/062517 [Registered on 12/02/2024].
Design, adaptation and content validation of the Sheffield Profile for Assessment and Referral for Care in Colombian Spanish (SPARC-Sp-Col).
Mendieta CV, de Vries E, Calvache JA … +3 more , Ahmedzai SH, Prue G, Reid J
BMC Palliat Care · 2026 Feb · PMID 41721299 · Full text
BACKGROUND: Palliative Care (PC) aims to improve the quality of life of individuals with life-threatening illnesses through the early identification and management of holistic needs. Many Colombians in need of PC die wit...
BACKGROUND: Palliative Care (PC) aims to improve the quality of life of individuals with life-threatening illnesses through the early identification and management of holistic needs. Many Colombians in need of PC die without having access to it. When we previously adapted and validated the Sheffield Profile for Assessment and Referral to Care for Spanish-speaking populations (SPARC-Sp), users reported unmet needs and challenges in comprehension and self-administration, particularly among those with lower literacy levels. We designed, culturally adapted, and validated a Colombia-specific module, SPARC-Sp-Col, as an enhancement to SPARC-Sp, to better capture the holistic PC needs of Colombian patients. METHODS: We used a five-step qualitative methodology: (1) preliminary adaptation of a Colombia-specific module as add-on to SPARC-Sp for the Colombian context; (2) online expert panel review; (3) integration of feedback and iterative refinement; (4) cognitive interviews with patients; and (5) focus groups with healthcare professionals, patients, and caregivers from across Colombia. RESULTS: The iterative adaptation process led to the refinement of item language for improved clarity and cultural resonance, while maintaining semantic equivalence with its original version. We included 17 new items to reinforce existing domains and a dedicated Colombia-specific module to address unmet local needs (5 of them) including housing conditions, violence and navigating the health care system. The evaluation of the resulting tool, SPARC-Sp-Col, demonstrated good content validity according to Aiken’s V (> 0.5), reflective of feedback from expert consensus, allied and social healthcare professionals, patient and caregivers. CONCLUSIONS: SPARC-Sp-Col is a culturally adapted, content-validated instrument that expands SPARC-Sp by incorporating a Colombian-specific module. It enables a more accurate and context-sensitive assessment of the holistic care needs of cancer patients in Colombia. Its development marks a key step toward improving the timely and equitable delivery of PC in a country where access to appropriate support is often lacking.
Family members' experiences of palliative sedation -a systematic integrative review.
Bäcklund L, Widegren M, Rejnö Å
BMC Palliat Care · 2026 Feb · PMID 41715049 · Full text
BACKGROUND: Palliative care means care in the event of an incurable illness where the intention is to alleviate suffering and promote quality of life. In cases where the symptoms cannot be fully alleviated, palliative se...
BACKGROUND: Palliative care means care in the event of an incurable illness where the intention is to alleviate suffering and promote quality of life. In cases where the symptoms cannot be fully alleviated, palliative sedation may be required which is a lowering of consciousness in patients using medication to alleviate their suffering. AIM: The aim of this systematic integrative literature review was to describe how palliative sedation for patients at the end of life is experienced by their family members. METHOD: A systematic integrative review as described by Whittemore and Knafl was performed using three databases; CINAHL, PubMed and APA PsychInfo. Eleven peer-reviewed studies published between 2005 and 2025 met the inclusion criteria. They described family members’ firsthand experiences with ethical considerations clearly stated and were not excluded for including participants under 18, being review articles, or being published in a language other than English. RESULTS: In total, the eleven studies comprised 1061 family members. Three of the studies came from Japan, two from the Netherlands, two more from the Netherlands, Belgium and UK and one from Belgium, Israel, Switzerland and Taiwan, respectively. Seven studies used quantitative methods, and four used qualitative methods. The results demonstrate how family members of a seriously ill person experience palliative sedation and are organized into eight categories: Affects the lifespan, Creates anxiety, Emphasizes importance of communication, Facilitates a good death, Highlights significance of participation, Impacts time and timing, Provides a chance for farewell and Relieves suffering. It was found that many family members of patients who received palliative sedation suffered. The suffering worsened the longer the sedation lasted. Palliative sedation also provided possibilities for a good death and farewell even though it was found to affect the life span. Clear information about what to expect and a good relationship with the healthcare staff was crucial. CONCLUSION: The well-being of family members was affected while the patients received palliative sedation, and they felt worse the longer the sedation lasted. Consistent information from the healthcare staff was of great importance. The lack of international guidelines and registries contributes to ambiguity regarding the definition and prevalence of palliative sedation in published articles, thereby limiting the scope of comparative research. Nevertheless, palliative sedation constitutes an important component of palliative care, underscoring the need for further studies, including examinations of cultural and religious influences on family members’ experiences.
Assessing palliative care needs in Swabia: a data-driven simulation framework for hospice and specialized outpatient palliative care demand.
Garber S, Eichner E, Ludwig S … +3 more , Schneider W, Brunner JO, Bartenschlager CC
BMC Palliat Care · 2026 Feb · PMID 41709242 · Full text
BACKGROUND: The impact of demographic change has far-reaching consequences for the entire healthcare system. One of the areas particularly affected is palliative and hospice care. To meet the demand for palliative and ho...
BACKGROUND: The impact of demographic change has far-reaching consequences for the entire healthcare system. One of the areas particularly affected is palliative and hospice care. To meet the demand for palliative and hospice care services, adequate capacity planning in inpatient and outpatient settings is essential. However, the available capacities per one million inhabitants in Germany vary significantly within the individual regions. METHODS: For an improved assessment of care needs, we propose a simulation-based analysis, carried out both retrospectively for 2019 and prospectively for 2039 for the southern German region of Swabia, and calculate the required capacities of hospices and specialized outpatient palliative care. We focus on cancer patients, as this group represents the largest proportion of patients requiring palliative and hospice care. RESULTS: Driven by demographic change and the increasing incidence of cancer in older age groups, the number of patients requiring palliative care is expected to increase substantially. Accordingly, our results indicate a marked rise in the demand for hospice and specialized outpatient palliative care for cancer patients up to the year 2039. This projected trend underscores the growing care needs within this patient population in the coming decades. CONCLUSION: Our study introduces a simulation-based framework for estimating demand for hospice and specialized outpatient palliative care. By offering a quantitative, mathematical-statistical perspective, the approach complements existing qualitative research and supports informed decision making in palliative care planning.
Motivations for hospice palliative care volunteerism and its associated factors among Chinese nursing undergraduates: a latent profile study.
Wang J, Liu L, Wang Y … +6 more , Wang D, Song Y, Zhan K, Sun X, Wang J, Tong H
BMC Palliat Care · 2026 Feb · PMID 41709179 · Full text
OBJECTIVE: To identify the potential categories of motivations for hospice palliative care among nursing undergraduates and to explore the influencing factors of different categories of motivations for hospice palliative...
OBJECTIVE: To identify the potential categories of motivations for hospice palliative care among nursing undergraduates and to explore the influencing factors of different categories of motivations for hospice palliative nursing undergraduates. METHODS: A cross-sectional study using the Inventory of Motivations for Hospice Palliative Care Volunteerism scale with 460 nursing undergraduates was conducted. Latent profile analysis was used to explore the nursing students’ motivations for hospice palliative care and using multinomial logistic regression to analyze the related factors of motivations for hospice palliative care. RESULTS: The overall mean score for motivations for hospice palliative care in nursing was (93.98 ± 18.48). There were three different subgroups of motivations for hospice palliative care characteristics, namely the “lack of motivation group” (33.8%), the “selfless contribution group” (37.1%), and the “initiative-oriented group” (29.1%). Choice of nursing profession, supportive attitude of family members, and parents’ involvement in the healthcare industry were associated with different profiles (p < 0.05). A potential preliminary association was observed between urban residence and the initiative-oriented group (OR = 0.597, p = 0.048), with a modest effect size and wide confidence interval indicating low estimation precision. CONCLUSIONS: Most nursing undergraduates have been categorized in the “selfless contribution group”. Students whose family member did not support hospice and chose the nursing profession for parent’s choice were the main factors for lack of motivation for hospice palliative care. Therefore, fostering accurate understanding of hospice palliative care among family members may be essential to enhance students’ motivation. Additionally, attention should be paid to cultivating students’ professional values and recognition during their undergraduate studies, which can further stimulate their motivation to engage in hospice palliative care.
Identification of Dutch hospital inpatients with possible palliative care needs: a nation-wide flash mob study.
van der Velden AW, de Heij AH, van den Beuken MH … +7 more , Kuip EJ, Hesselmann GM, de Nijs EJ, Huisman BA, Oosten AW, Reyners AK, de Graeff P
BMC Palliat Care · 2026 Feb · PMID 41689034 · Full text
BACKGROUND: Identifying hospital inpatients who are approaching the end of life is essential for providing optimal palliative care. The study aims to determine the prevalence of hospital inpatients with a potentially lim...
BACKGROUND: Identifying hospital inpatients who are approaching the end of life is essential for providing optimal palliative care. The study aims to determine the prevalence of hospital inpatients with a potentially limited life expectancy (< 12 months) using the surprise question, and to assess the extent of specialist palliative care team (PCT) involvement in this population. METHODS: On the 16th of April 2021, we conducted a multi-center, cross-sectional, nationwide study in Dutch hospitals using a flash mob design. Nurses and physicians independently answered the surprise question (SQ) for all adult hospital inpatients: “Would you be surprised if this patient died within the next 12 months?”. If answered negatively, they were then asked to indicate if they estimated life expectancy to be less than 3 months, and whether PCTs were involved. RESULTS: In total, 48 of 68 (70%) Dutch hospitals participated in the study. Nurses and physicians filled out 16,607 questionnaires regarding 8,768 patients. Of 8,768 patients, 80% were admitted because of non-malignant diseases. Physicians answered the SQ negatively for 2,826 (35%) patients. Physicians indicated that PCT was involved in 6% of these patients and that PCT referral was considered useful for another 6%. For patients with an estimated life expectancy < 3 months (n=582), these proportions increased to 15% and 13%, respectively. CONCLUSIONS : A third of all hospital inpatients had a possible life-limiting condition and may benefit from palliative care and advance care planning. Future studies should focus on exploring the palliative care needs of hospital inpatients and possible benefits of timely implementation of palliative care.
Standing next to but not being part of: relatives' experiences of support from healthcare professionals when general palliative care is provided at home.
Midlöv EM, Sterner T, Porter S … +2 more , Lindberg T, Forss KS
BMC Palliat Care · 2026 Feb · PMID 41689015 · Full text
BACKGROUND: Relatives play a crucial role when palliative care is provided at home. More advanced care at home places higher demands on relatives, taking great responsibility, facing challenges, and often lacking adequat...
BACKGROUND: Relatives play a crucial role when palliative care is provided at home. More advanced care at home places higher demands on relatives, taking great responsibility, facing challenges, and often lacking adequate knowledge and skills to provide care. Therefore, relatives need support from healthcare professionals, yet do not receive the needed support. This study aimed to elucidate relatives' experiences of support from healthcare professionals before and after a patient's death when general palliative care is provided at home. METHODS: A phenomenological hermeneutical method was used. The inclusion criteria were relatives of people who had died, involved in general palliative care at home. The sample consisted of 14 adult relatives involved in general palliative care at home between one week and 12 months. Data were collected through individual interviews between January and May 2025. RESULTS: Relatives needed to be seen as they felt left out; they felt an overwhelming responsibility; they needed to feel safe at home through guidance from and access to healthcare professionals; they felt the need to know what was happening and what to expect; and they needed help in processing the grief both before and after the patient's death. These themes formed the main theme: Standing next to but not being part of. CONCLUSIONS: The findings of this study showed a lack of support for relatives before and after the patient's death but offer insights into what support relatives need from HCPs when general PC is provided at home. Relatives need to feel seen, informed and prepared, to feel safe when care is provided at home, and not feel overwhelmed by the responsibility of the situation. As research continuously reveals that relatives have unmet support needs, this highlights the need for tailored interventions and the targeting of available support actions for improved support. Since relatives play a crucial role in palliative care at home, continued work with education and training for relatives should be prioritised to support them in feeling prepared, obtaining necessary caregiving knowledge and skills, enabling them to cope with the situation at home.
Implementing patient-centred outcome measures in palliative care clinical practice. An updated systematic review of facilitators and barriers.
Antunes B, Barclay S, Kuhn I … +10 more , Eagar K, Bausewein C, Murtagh F, Etkind S, Bowers B, Dixon S, Lovick R, Harding R, Higginson I, Shokraneh F
BMC Palliat Care · 2026 Feb · PMID 41680754 · Full text
BACKGROUND: Patient-centred outcome measures (PCOMs), when well implemented, are powerful tools facilitating patient, family and clinical communication to better respond to patient needs. Their routine use in palliative...
BACKGROUND: Patient-centred outcome measures (PCOMs), when well implemented, are powerful tools facilitating patient, family and clinical communication to better respond to patient needs. Their routine use in palliative care practice still faces challenges. OBJECTIVE: To update a systematic review of PCOMs implementation, reviewing and synthesising new evidence on facilitators, barriers, lessons learned, measures used, models of implementation, costs, implementation outcomes, and consequences in clinical practice. METHODS: We searched eight information sources supplemented by hand-searching and citations of the original review and studies identified by the expert advisory committee. This prospectively registered review included studies using a PCOM during clinical care of adult patients with advanced disease in all settings and extracted data on: PCOMs used, models of implementation, facilitators, barriers, lessons learned, costs, and implementation outcomes. We employed narrative synthesis and tabulated findings, following all PRISMA reporting guidelines. RESULTS: We included 114 studies. A major new facilitator was the integration of electronic/digital PCOMs into Information Technology systems. Main barriers remain largely unchanged and relate to healthcare professionals' beliefs. Implementation was highlighted as a complex intervention, needing planning, assessment and fine tuning throughout. Sixty-two included studies mentioned at least one implementation outcome. Eighteen models, frameworks and theories were identified in 25 included studies. No studies reported on costs of implementation. CONCLUSION: This work reveals the complexity of implementing PCOMs in palliative care practice. The main clinical and research implications of our findings highlight the central importance of staff engagement and training staff in PCOM tools, communication strategies, and cultural competence.
Factors related to implementation of outpatient palliative care for advanced cancer patients in a safety-net health system: a qualitative study using the theoretical domains framework.
DiMartino L, Repasky EC, Skinner CS … +4 more , Sadeghi N, Hong AS, Rhodes R, Hogan TP
BMC Palliat Care · 2026 Feb · PMID 41673632 · Full text
BACKGROUND: Clinical practice guidelines strongly recommend oncology clinicians refer all advanced cancer patients for early intervention by a specialized palliative care (PC) team during treatment. Studies indicate that...
BACKGROUND: Clinical practice guidelines strongly recommend oncology clinicians refer all advanced cancer patients for early intervention by a specialized palliative care (PC) team during treatment. Studies indicate that cancer patients receiving care in safety-net systems experience low rates of outpatient PC referral and delays in accessing care. Yet, few studies have examined factors influencing early PC implementation in settings predominantly serving underserved populations. This study qualitatively evaluated the multilevel (patient-, provider-, clinic-level) factors that influence early integration of PC for advanced cancer patients seen at a large, urban safety-net health system. METHODS: We conducted semi-structured interviews with medical oncology and PC clinic staff (attending physicians, fellows, advanced practice providers, registered nurses, administrators) who manage outpatient care for patients diagnosed with solid tumor cancers. The interview guide was informed by the Theoretical Domains Framework (TDF) to understand challenges, potential facilitators, and experiences with PC delivery. We analyzed interview transcripts using qualitative template analysis to identify salient themes. RESULTS: We interviewed 21 participants, including 17 clinicians (12 medical oncology, 5 PC) and 4 administrators. We identified nine barrier/facilitator subthemes spanning 10 of the 14 TDF domains and multiple levels of influence. Patient-level: (1) logistical and financial challenges (e.g., transportation, competing priorities), (2) lack of health literacy which oncology clinicians and PC nurses improve through education, (3) PC provides access to range of resources which positively impacts patient care (e.g., symptom management, care coordination). Provider-level: (4) lack of familiarity/awareness of clinical practice guidelines/institutional protocols for PC, (5) PC manages patient care for which oncology clinicians lack time or expertise, (6) oncology clinicians’ difficulty initiating PC conversations underscores communication is an essential skill. Multiple levels: (7) lack of appointment availability/limited clinic capacity, (8) patient appointment burden and synchronizing appointments, (9) multiple strategies can support PC integration (e.g., patient education materials, training for oncology clinicians/staff, and electronic health record alerts/reminders for PC referrals). CONCLUSIONS: Our study findings suggest addressable challenges in implementing PC services for advanced cancer patients treated in a safety-net setting. The results will be used to inform development of a multilevel, multicomponent implementation strategy to improve early PC delivery and cancer outcomes for traditionally underserved patients.
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