BACKGROUND: Patients with dementia at the end-of-life frequently visit the emergency department. These visits can be distressing for patients and families and challenging for staff. AIM: To explore the perspectives of em...BACKGROUND: Patients with dementia at the end-of-life frequently visit the emergency department. These visits can be distressing for patients and families and challenging for staff. AIM: To explore the perspectives of emergency department health care professionals about end-of-life care for patients with dementia in the emergency department. DESIGN: Qualitative study using semi-structured focus groups interviews ( = 23). Interviews took place in-person after recruitment via a contact person and were transcribed verbatim. Reflexive thematic analysis was used. SETTING/PARTICIPANTS: Physicians, nurses, and health care assistants who regularly work at the emergency department of a tertiary hospital. RESULTS: Participants' views on end-of-life care for patients with dementia in the emergency department produced five main themes: (1) the cultural context and perceived place of patients with dementia in the emergency department and in society; (2) the person with dementia-their dignity and multidimensional needs; (3) end-of-life care in the emergency department-managing uncertainty, setting goals, and meeting specific care needs; (4) conditions for supporting the palliative care needs of patients with dementia at the end of life in the emergency department; and (5) ethics and moral distress of health professionals in caring for patients with dementia at the end of life in the emergency department. CONCLUSIONS: Health care professionals identify strengthening dementia awareness, implementing structured training programs, and improving the physical environment and care models within emergency departments as key priorities for practice.
An ongoing commitment to quality improvement (QI) is essential in palliative care (PC), where patients are often frail, suffering is pervasive, and time may be short. Multicenter collaboration in QI allows PC teams to sh...An ongoing commitment to quality improvement (QI) is essential in palliative care (PC), where patients are often frail, suffering is pervasive, and time may be short. Multicenter collaboration in QI allows PC teams to share and harness innovations and approaches from colleagues across the country and around the world. In order to learn at scale, PC teams must be able to directly compare their practices through standardized measurement and reporting of program structures, processes of care, and patient- and institution-level outcomes. Several PC projects around the world adopted this approach to standardized data collection and benchmarking to monitor quality, identify gaps in care, and promote best practices. We highlight lessons learned from these QI collaboratives. Key insights include that PC teams can collect standardized patient-level outcome data in the course of clinical care that can illuminate variations, gaps in care, and best practices. Further, data showed that there is a wide variation in PC practice and outcomes that cannot be explained by the resources available, even for core care parameters. We also found that PC practice is evolving such that PC teams are caring for more patients with conditions other than cancer and more patients are being referred to outpatient PC. Additionally, significant improvements in outcomes, including pain, are possible and PC teams can also use QI data to support requests for additional resources and for research to advance our field. The work of these organizations highlights our obligation to the people we serve to show that we are learning organizations, committed absolutely to improving quality of care, quality of life, and the meaningful outcomes that matter to our patients and their families. Future collaborative QI initiatives in PC are needed to ensure and improve quality of care.
BACKGROUND: Frailty is a core geriatric syndrome with significant implications for palliative care, affecting prognosis and quality of life in older patients with advanced lung cancer, yet comprehensive evidence on its p...BACKGROUND: Frailty is a core geriatric syndrome with significant implications for palliative care, affecting prognosis and quality of life in older patients with advanced lung cancer, yet comprehensive evidence on its prevalence and influencing factors is limited. This study aims to estimate the prevalence of frailty in older patients with advanced lung cancer receiving nonsurgical treatment and to identify associated factors. METHODS: Following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, we systematically searched 10 databases (including PubMed, Embase, and Web of Science) from inception to August 2025. Observational studies and clinical trials reporting frailty prevalence were included. A random-effects model using the Freeman-Tukey double arcsine transformation was used to calculate the pooled prevalence. Subgroup analyses and sensitivity analyses were conducted. Quality was assessed using the NOS, Joanna Briggs Institute, Cochrane, and Methodological Index for Non-Randomized Studies (MINORS) scales, and the certainty of evidence was evaluated using the Grading of Recommendations Assessment, Development, and Evaluation approach. RESULTS: Twenty-five studies, encompassing 8643 patients, were included. The pooled frailty prevalence was 41.0% (95% confidence interval: 32.3%-50.0%), but heterogeneity was extremely high ( 98.8%; 95% prediction interval: 5.7%-83.1%). Subgroup analysis indicated that the type of frailty assessment tool, age stratification, and study design were major sources of heterogeneity. Malnutrition, pain, depression, treatment toxicity, and poor functional status were closely associated with frailty. CONCLUSION: The frailty burden in older patients with advanced lung cancer receiving nonsurgical treatment is high, but the prevalence varies significantly depending on the population and assessment method. Frailty assessment should be individualized and embedded into routine palliative care, and individualized intervention strategies should be developed targeting modifiable risk factors.
J Palliat Med
· 2026 Jun · PMID 41936555
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INTRODUCTION: Nutrition impact symptoms (NIS) are defined as symptoms that may adversely affect an individual's health and increase the risk of malnutrition and adverse clinical outcome. OBJECTIVE: To examine factors ass...INTRODUCTION: Nutrition impact symptoms (NIS) are defined as symptoms that may adversely affect an individual's health and increase the risk of malnutrition and adverse clinical outcome. OBJECTIVE: To examine factors associated with longitudinal changes in the number of NIS over time in outpatients with advanced cancer receiving oral nutritional supplements (ONS) or enteral nutrition (EN). METHODS/APPROACH: This prospective longitudinal study included adults with advanced cancer referred for exclusive palliative care at a national cancer center in Brazil. NIS was assessed using the Patient-Generated Subjective Global Assessment Short Form. Generalized estimating equations (GEE) were used to model changes in the number of NIS across three time points: baseline (T0), a median of 23 days (T1), and a median of 49 days (T2). Explanatory variables included demographic, clinical, inflammatory, and functional parameters. RESULTS: A total of 244 patients were included in the analysis (69.7% ≥60 years; 50.4% women). The most common primary tumor sites were head and neck (32.4%), upper gastrointestinal (18.0%), and gynecological cancers (13.9%). At baseline, 78.3% had ≥1 NIS. The prevalence of most NIS decreased significantly from T0 to T1, with no additional reductions from T1 to T2. In the multivariable GEE model, factors independently associated with a reduction in the number of NIS over time included receiving ONS rather than EN (β = -0.441; < 0.001), higher Karnofsky Performance Status (β = -0.113; < 0.001), and higher serum albumin values (β = -0.120; = 0.049). Reductions in NIS were also associated with improvements in global quality of life. CONCLUSION: In outpatients with advanced cancer starting exclusive palliative care, the route of nutritional support, functional status, and albumin levels were independently associated with changes in NIS over time. These findings underscore the importance of early, individualized, and multimodal nutritional strategies to support symptom management.
Koh WL, Lau J, Ang C
… +3 more, Yee CM, Ho S, Tan KK
Palliat Med
· 2026 Jun · PMID 41934154
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BACKGROUND: Home hospice services are increasingly central to palliative care as more patients express preference for care or death at home. In these settings, the role of family caregivers becomes crucial. Despite its i...BACKGROUND: Home hospice services are increasingly central to palliative care as more patients express preference for care or death at home. In these settings, the role of family caregivers becomes crucial. Despite its importance, research has often focussed on patient or feasibility. Few have examined home-based palliative care from a caregiver-centric standpoint. AIM: This review summarises factors associated with caregiver burden among family caregivers of home-based palliative patients. DESIGN: A systematic review was conducted. DATA SOURCES: Systematic searches on PubMed, Scopus, CINAHL, PsycINFO from inception to December 2024 were done. Included studies examined (1) caregiver burden and (2) home-based palliative family caregivers. Grey literature, non-English publications and studies without primary data were excluded. Risk of bias was assessed with Joanna Briggs Institute tools. RESULTS: Twenty-one studies examining 2554 family caregivers were included. Identified factors were categorised as patient-related, caregiver-related or others. Patient-related factors encompassed patients' support needs, disease progression and intrapersonal factors. Caregiver-related factors consisted of psychological wellbeing, caregiving role and restrictions, and intrapersonal factors. Other factors include logistical, financial or care arrangement matters. Although our findings were generally aligned with literature, most studies were cross-sectional and conducted in similar cultural settings. CONCLUSIONS: Heterogeneity across studies highlighted uniqueness of patient-caregiver dyads on caregiver burden - for instance, family caregivers with multiple social roles may face heightened pressure from meeting patients' care demands. Caregiver burden interventions should adopt multi-pronged approaches to ensure holistic support for patients and family caregivers, such as incorporating both medical and psychosocial support to enhance wellbeing of both parties.
J Palliat Med
· 2026 Mar · PMID 41913510
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BACKGROUND: Despite evidence supporting the benefits of Patient-Reported Outcome Measures (PROMs) in palliative care, their widespread implementation remains unrealized. This article aims to provide key insights and reco...BACKGROUND: Despite evidence supporting the benefits of Patient-Reported Outcome Measures (PROMs) in palliative care, their widespread implementation remains unrealized. This article aims to provide key insights and recommendations to aid the implementation of PROMs in health care services by addressing the question: What are the attitudes of health care professionals toward PROMs in palliative care, as reported in the qualitative literature? METHODS: We conducted a systematic search with a narrative synthesis of the findings. Systematic searches of Medline, EMBASE, CINAHL, and PsycInfo were undertaken for studies with qualitative evidence, published between June 2013 and January 2025. Included studies were primary studies using qualitative methods to explore health care professionals' attitudes and experiences with PROMs in adult palliative care settings. Study quality was appraised using the Critical Appraisal Skills Program checklist, and findings were synthesized using thematic analysis informed by a hermeneutic framework. RESULTS: Nineteen studies met the inclusion criteria and were included for analysis. We identified three central themes regarding the attitudes of health care professionals toward PROMs: (1) the effect of PROMs on the provision of health care, (2) the contribution of PROMs in delivering patient-centered care, and (3) the integration of PROMs into clinical practice. CONCLUSIONS: Given the ongoing challenges in integrating PROMs into routine palliative care, a systematic implementation approach is imperative. Our findings highlight important areas that require detailed consideration to enhance routine PROM implementation in clinical care, by reducing barriers and attending to clinician concerns.
Dussault N, Morphew J, Nwagwu V
… +9 more, Gatta B, Richardson A, Payne N, White-Chu EF, Wilson L, Dalton H, Winstead-Derlega CE, Ramos K, Jones CA
J Palliat Med
· 2026 Mar · PMID 41913502
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Wounds are a common and burdensome problem for patients with serious illness receiving palliative care and hospice services. Declining mobility, functional impairment, malnutrition, progression of underlying disease, and...Wounds are a common and burdensome problem for patients with serious illness receiving palliative care and hospice services. Declining mobility, functional impairment, malnutrition, progression of underlying disease, and age-related skin changes all increase risk. Wound management can therefore be challenging for clinicians, patients, and caregivers. Symptoms such as pain, odor, drainage, functional limitations, and psychological distress can substantially worsen suffering. Optimal care requires an interdisciplinary approach that considers the patient's underlying illness, prognosis, and goals of care. Palliative care clinicians are well-positioned to reduce this distress and improve comfort through goal-concordant wound-care strategies. Given the high prevalence of wounds in palliative care populations and the need for skilled, patient-centered management, we convened a panel of palliative care clinicians, geriatricians, geropsychologists, and wound-care specialists to identify core principles and practical strategies for supporting patients with wounds. In this article, we outline key tips for assessing and managing wounds, including understanding prognosis and goals of care, evaluating care settings, tailoring management to the underlying disease process, and addressing symptoms such as pain, odor, and psychosocial distress. A thoughtful, interdisciplinary approach is essential to reduce the physical and emotional burden wounds place on patients and caregivers.
Bergman TD, Onwuteaka-Philipsen BD, Bolt EE
… +2 more, Pasman HRW, van der Plas AGM
Palliat Med
· 2026 Jun · PMID 41906253
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BACKGROUND: To design and implement interventions that promote advance care planning, behaviour change models can be useful. A widely used model is the Transtheoretical model by Prochaska and DiClemente (1982), describin...BACKGROUND: To design and implement interventions that promote advance care planning, behaviour change models can be useful. A widely used model is the Transtheoretical model by Prochaska and DiClemente (1982), describing five Stages of Change: precontemplation, contemplation, preparation, action, and maintenance. However, this model does not fully accommodate the advance care planning process. First, advance care planning can include not one, but ideally up to three actions: discussing wishes with family/friends, with healthcare professionals, and documentation. Second, the order of these actions can vary, and each action can be omitted. Third, advance care planning is an ongoing process in which individuals ideally reflect upon their wishes regularly; therefore, maintenance should be considered as part of action. AIM: To develop a comprehensive behaviour change model for advance care planning based on the Stages of Change: the Advance Care Planning-Applied Stages of Change model (ACP-ASC model). METHODS: The ACP-ASC model is based on current literature and data from a nationwide sample of older people. It was conceptualized through extensive discussions within a multidisciplinary research team, including healthcare professionals.Insights:To accommodate the complexity of advance care planning, the action stage of the ACP-ASC model distinguishes three types of advance care planning actions (discussions with family/friends, with healthcare professionals, and documentation) and does not prescribe an order. Further, maintenance is incorporated in the action stage, resulting in levels of action (first; maintained) for each type of advance care planning action. Last, we discuss further considerations, practice implications, and recommendations for future research.
BACKGROUND: Although telehealth is increasingly implemented in palliative oncology, the psychosocial effectiveness of nurse-led telehealth interventions remains unclear. Existing reviews are largely descriptive and do no...BACKGROUND: Although telehealth is increasingly implemented in palliative oncology, the psychosocial effectiveness of nurse-led telehealth interventions remains unclear. Existing reviews are largely descriptive and do not isolate nurse-delivered interventions or synthesize psychosocial outcomes for both patients and family caregivers. AIM: To evaluate the effectiveness of nurse-led telehealth interventions on psychosocial outcomes among patients with cancer receiving palliative care and their family caregivers. DESIGN: Systematic review and meta-analysis. DATA SOURCES: Nine electronic databases were searched from inception to April 2025 for randomized controlled trials evaluating nurse-led telehealth interventions. RESULTS: Nine trials ( = 3177 participants) were included. Among patients, nurse-led telehealth significantly reduced anxiety (Hedges' = 0.46) and improved quality of life (Hedges' = 0.33). Effects on depressive symptoms were not statistically significant. Among family caregivers, significant improvements were observed in anxiety (Hedges' = 0.30), depression (Hedges' = 0.42), quality of life (Hedges' = 0.45), and stress burden (Hedges' = 0.44). Interventions comprising more than six sessions demonstrated greater effectiveness for selected outcomes. CONCLUSION: Nurse-led telehealth interventions improve psychosocial outcomes in palliative oncology for both patients and family caregivers. Structured and adequately intensive programs may enhance intervention impact and support evidence-based digital nursing practice.
Hawley CN, Alcantra N, Chen C
… +8 more, Feng Y, Lattimore K, Oh S, Rajeeva B, Robinson FI, Shenbanjo M, Oslin E, Bogetz J
J Palliat Med
· 2026 Mar · PMID 41883017
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BACKGROUND: Palliative care interventions for children with serious illness require real-world design expertise to bring research to the bedside in ways that are engaging, effective, and feasible. OBJECTIVE: To describe...BACKGROUND: Palliative care interventions for children with serious illness require real-world design expertise to bring research to the bedside in ways that are engaging, effective, and feasible. OBJECTIVE: To describe the collaborative process of bringing an evidence-based humanistic care intervention, photo-narratives, through practical user experience (UX) design for future implementation at a children's hospital. METHODS: The collaborative design process was completed at an academic university. Researchers at the affiliated children's hospital approached two teams of UX design graduate students to (1) further refine and (2) develop a technology-integrated implementation strategy for the photo-narrative intervention. RESULTS: The researchers and teams met weekly to follow a project-specific seven-step UX design approach, including (1) framing project timeline and deliverables, (2) regulatory and access considerations, (3) understanding the problem and intervention, (4) data collection, (5) design constraints (information technology considerations, workflow), (6) low-fidelity prototyping, and (7) usability testing and high-fidelity prototyping. CONCLUSION: Collaboration between researchers and UX design teams can further the critical intervention design and prototyping that is essential to implementing successful real-world palliative care interventions.
Sagin A, Musheno-King R, Olenik JM
… +4 more, Bennett NL, Dine CJ, Dingfield L, Balmer DF
J Palliat Med
· 2026 Mar · PMID 41873231
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BACKGROUND: As more medical schools implement longitudinal palliative care (PC) curricula, the need for robust evaluation that demonstrates curricular outcomes has become increasingly important. OBJECTIVES: The authors p...BACKGROUND: As more medical schools implement longitudinal palliative care (PC) curricula, the need for robust evaluation that demonstrates curricular outcomes has become increasingly important. OBJECTIVES: The authors prospectively evaluated a PC curriculum at the University of Pennsylvania's Perelman School of Medicine, using the Context, Input, Process, Product model. DESIGN: Between 2021 and 2025, data that provided evidence of value were generated from a variety of sources and stakeholders to address evaluation questions about acceptability, student knowledge and attitudes about PC topics and engagement in PC opportunities. Both qualitative and quantitative data were collected with an assortment of tools including evaluation scores, focus groups, interviews, written reflections, quiz scores, and medical record notes. RESULTS: Results of this evaluation indicated that the curriculum achieved the intended outcomes of acceptance to diverse stakeholders, improved student knowledge and attitudes about PC, and increased student engagement in PC. Unanticipated impacts of the curriculum were also captured. CONCLUSIONS: The evaluation provided multisource evidence of the value of a longitudinal curriculum in PC and may serve as an example for others charged with evaluating longitudinal PC curricula in medical school.
Maun E, Gardiner C, McConnell T
… +3 more, Seddon K, Woodhead A, Hudson B
Palliat Med
· 2026 Jun · PMID 41872985
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BACKGROUND: Loneliness has been linked to poorer quality of life and worse symptoms in the final weeks prior to death. However, research on prevalence at end of life has yet to be systematically reviewed. AIM: To synthes...BACKGROUND: Loneliness has been linked to poorer quality of life and worse symptoms in the final weeks prior to death. However, research on prevalence at end of life has yet to be systematically reviewed. AIM: To synthesise evidence of prevalence and correlates of loneliness among adults at the end of life. DESIGN: Systematic review without meta-analysis, due to high study heterogeneity, registered on PROSPERO (CRD42024581962). DATA SOURCES: OVID Medline, PsycInfo, Web of Science, PubMed, Social Policy and Practice and Health Management Information Consortium databases were searched up to April 2025. Studies estimating prevalence of loneliness were eligible where the sample (or identifiable sub-sample) were adults with a terminal illness, receiving palliative care or retrospectively identified with a loneliness measure less than 12 months prior to death. RESULTS: Fifteen eligible studies were included. Most studies were North American or European, with samples based on clinical diagnosis or palliative care receipt. Prevalence estimates of moderate or worse loneliness ranged from 20% to 73% and high loneliness from 8% to 33% in studies sampling based on clinical diagnosis or care receipt, and 7%-12% and 18.6% respectively, in studies sampling retrospectively based on time to death. However, findings are presented with caution due to significant heterogeneity across studies. CONCLUSIONS: Evidence suggests loneliness may be a difficulty faced by a significant minority of people at the end of life, requiring support for individuals, within services and communities. Research is needed in a wider range of countries, and to develop and assess effective interventions.
Salama R, Simpson J, Eccles FJR
… +1 more, French M
Palliat Med
· 2026 Jun · PMID 41872750
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BACKGROUND: Trauma-informed palliative care aims to improve end-of-life experiences by recognising and responding to the presence of psychological trauma. While many practitioners support the approach, they also acknowle...BACKGROUND: Trauma-informed palliative care aims to improve end-of-life experiences by recognising and responding to the presence of psychological trauma. While many practitioners support the approach, they also acknowledge the need to build a stronger evidence base. AIM: To: (1) understand the methodology and defining features of existing research; (2) describe how the impact of psychological trauma at the end-of-life is understood; and (3) describe the nature of, and challenges to, palliative care approaches that recognise and respond to such trauma. DESIGN: A systematic scoping review was conducted following the Joanna Briggs Institute guidelines. The review protocol was registered on Open Science Framework. DATA SOURCES: Eight electronic databases were systematically searched; evidence sources that considered psychological trauma in an end-of-life context were included. RESULTS: Ninety-nine sources (13 countries) were identified. 40% were clinical case studies. Cancer was the primary diagnosis for the majority of patients in 55 sources and 24 sources focussed on veterans. Six ways of describing the impact of psychological trauma at the end-of-life were identified. Few sources ( = 20) implemented trauma-informed care; 15 of these were clinical case studies. Though trauma-informed palliative care was not always explicitly present, six palliative care approaches to recognising and responding to psychological trauma, and five main challenges to its effective implementation, were identified. CONCLUSIONS: Limited research has been conducted on trauma-informed palliative care. However, the review identified a substantial body of evidence that describes concepts relevant to its approach. These findings provide a valuable starting point for future research.