Oncology and palliative care staff frequently encounter death yet often lack structured opportunities for reflection following these experiences. This study asked: How can we develop and implement a reflective practice p...Oncology and palliative care staff frequently encounter death yet often lack structured opportunities for reflection following these experiences. This study asked: How can we develop and implement a reflective practice program for oncology and palliative care staff to support them with patient death? Reflective practice is recognized as a valuable tool to support staff well-being; however, there is limited literature describing how such interventions are implemented in the hospital setting. A participatory insider-action research approach was undertaken to codevelop a reflective practice program. A multidisciplinary Action Research Group collaborated through a series of meetings to codesign the program. The data consisted of contemporaneous notes capturing group discussions on what was needed to develop the program. Thematic analysis was used to identify key ideas and patterns that emerged from these discussions, enabling the group to identify factors required to develop a format to support guided reflection. Key themes included the importance of language, timing and location, facilitation and structure, and case selection. The final outcome was a practical, semistructured format for reflective practice sessions for staff to follow as a framework to support reflection and emotional processing in response to patient death. Using an insider action research approach, this staff-led project offers an adaptable framework for structured reflection in acute hospital settings and represents an important initial step towards embedding reflective practice into the culture of health care.
BACKGROUND: Music therapy is one palliative care approach to improve physical and psychological outcomes for cognitively impaired children with medical complexity (CMC), their parents, and families. However, CMC are ofte...BACKGROUND: Music therapy is one palliative care approach to improve physical and psychological outcomes for cognitively impaired children with medical complexity (CMC), their parents, and families. However, CMC are often excluded because some specialist services may not accommodate cognitively impaired and nonverbal children and are generally only available within metropolitan areas (large hospitals/cities). Many CMC are at home and cannot access such interventions. This study examined the feasibility and acceptability of a home-based, remote music therapy (RemoteMT) intervention for cognitively impaired CMC receiving palliative or complex care. DESIGN: One-group pre-/post-intervention study design. SETTING/SUBJECTS: Seventeen CMC receiving palliative/complex care and their parents ( 17 dyads) participated in the study. All study activities took place in participant homes in the United States. MEASUREMENTS: Parents completed measures at T1 pre- (baseline) and T2 post-intervention (six weeks post-baseline) to assess CMC outcomes of physical stress and sleep disturbance; parent outcomes of anxiety, sleep disturbance, and perceived stress; and family outcomes of family adaptability and cohesion. RESULTS: Results demonstrated improved child, parent, and family outcomes (e.g., 0.027 for child physical stress, 0.095 for family cohesion, 0.105) and feasible recruitment, data collection and intervention delivery. CONCLUSIONS: RemoteMT was a feasible and acceptable intervention for cognitively impaired CMC and their parents. Results indicate strong promise for benefits to child and parent outcomes. Full-scale efficacy testing is warranted.
Smirnova N, Batieste T, Cross SH
… +4 more, Jamdar S, Peterson CS, Vaughan CP, Kavalieratos D
J Palliat Med
· 2026 Apr · PMID 41974615
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BACKGROUND: Chronic obstructive pulmonary disease (COPD) has an unpredictable trajectory and high symptom burden, complicating end-of-life (EOL) decisions around place of death and hospice use. Little is known about how...BACKGROUND: Chronic obstructive pulmonary disease (COPD) has an unpredictable trajectory and high symptom burden, complicating end-of-life (EOL) decisions around place of death and hospice use. Little is known about how families navigate these decisions. METHODS: We conducted semi-structured interviews with bereaved caregivers of people with COPD who received pulmonary care at a U.S. academic center and died within 12 months. Two investigators performed template analysis to identify themes. RESULTS: We interviewed 18 caregivers (median age 58; 50% Black; 89% female). Fifty-six percent of decedents received hospice; 33% died at home. Caregivers described five themes: missed prognostic cues and poor communication; hospice as both loss and relief; home as ideal but hospital as default; financial influences on decisions; and mismatch between hospice and COPD needs. CONCLUSIONS: Caregivers identified a readiness gap driven by prognostic uncertainty, communication challenges, and financial constraints. Clearer communication and hospice models better aligned with COPD are needed.
Gaysynsky A, Muro A, Senft Everson N
… +2 more, Iles I, Chou WS
J Palliat Med
· 2026 Apr · PMID 41963247
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BACKGROUND: AI-generated images can support or impede health communication efforts and influence perceptions of health-related topics, making it important to evaluate how these images portray topics like palliative care...BACKGROUND: AI-generated images can support or impede health communication efforts and influence perceptions of health-related topics, making it important to evaluate how these images portray topics like palliative care (PC) and hospice care (HC), which are characterized by limited public understanding (e.g., regarding where these services are delivered) and misperceptions (e.g., widespread conflation of these services). OBJECTIVES: To examine characteristics of AI-generated PC and HC images. DESIGN: Three generative AI tools (ChatGPT, DreamStudio, and Midjourney) were used to generate 40 images each for the prompts "a photograph of palliative care" and "a photograph of hospice care" ( = 240). Images were coded for features such as the setting and the characteristics of people in the image (patients, providers, and caregivers). Code frequencies and percentages were calculated using STATA. Differences were assessed across prompts and AI tools. RESULTS: PC images more often depicted medical settings (PC = 37.5%, HC = 27.5%) and medical equipment (PC = 67.5%, HC = 50.0%). DreamStudio images were the most medicalized. When included, patients were generally presented as White (PC = 85.0%, HC = 91.0%), female (PC = 81.0%, HC = 75.3%), and older (PC = 88.0%, HC = 94.4%) and rarely had negative affect (PC = 5.0%, HC = 2.2%) or looked ill (PC = 4.0%, HC = 2.2%). Providers were more racially diverse (PC = 41.1%, HC = 48.4% non-White), but nearly all were women (PC = 95.9%, HC = 96.9% female). Providers displayed supportive touch frequently (PC = 72.6%, HC = 71.9%) but were rarely shown engaging in medical tasks (PC = 12.3%, HC = 6.3%). Caregivers were infrequently included in either PC or HC images. CONCLUSIONS: The few substantial differences identified between PC and HC images could reinforce conflation between these services. Some image features could also create additional misperceptions (e.g., regarding the role of caregivers).
BACKGROUND: Ambulatory palliative care (PC) focuses on managing complex symptoms, yet assessment relies on recall during infrequent visits to manage daily fluctuating symptoms. We aimed to design a PC-anchored remote sym...BACKGROUND: Ambulatory palliative care (PC) focuses on managing complex symptoms, yet assessment relies on recall during infrequent visits to manage daily fluctuating symptoms. We aimed to design a PC-anchored remote symptom assessment (RSA) tool with patients and clinicians. METHODS: We used user-centered, Agile design to develop and iteratively refine EMA-PAL, a web-based RSA prototype. Patients and clinicians ( = 14) from an ambulatory PC clinic participated in staged prototype development and testing through focus groups and interviews. RESULTS: EMA-PAL features patient- and provider-facing interfaces that visualize daily Edmonton Symptom Assessment System (ESAS) scores, highlight severe symptoms, and support shared review during visits. Participants endorsed EMA-PAL's potential to enhance communication and workflow efficiency and identified priorities for future development (medication tracking and workflow integration). CONCLUSION: This exploratory pilot suggests that PC-anchored RSA tools such as EMA-PAL may help address gaps in symptom assessment and timelier and patient-centered symptom management in ambulatory PC.
BACKGROUND: Clinical guidelines recommend naldemedine for opioid-induced constipation in patients with cancer, either with conventional laxatives or as a first-choice option. Making prophylactic naldemedine a new standar...BACKGROUND: Clinical guidelines recommend naldemedine for opioid-induced constipation in patients with cancer, either with conventional laxatives or as a first-choice option. Making prophylactic naldemedine a new standard treatment for opioid-induced constipation requires a demonstration of its value for money. OBJECTIVES: We aimed to evaluate the cost-effectiveness of prophylactic naldemedine in patients with cancer initiating strong opioid therapy. DESIGN: We conducted a cost-effectiveness analysis of prophylactic naldemedine replacing standard, nonprophylactic use from the payer's perspective, using a decision tree model based on data from a multicenter, double-blind, randomized controlled trial in Japan. SETTING/SUBJECTS: The study population included patients aged ≥20 years and initiating strong opioid therapy for the first time. RESULTS: The incremental cost-effectiveness ratio of prophylactic naldemedine for opioid-induced constipation was 1,445,276 Japanese yen (¥) or 9,635 United States dollars (USD) with an exchange rate of 1 USD = 150 ¥ per quality-adjusted life year. Using the official value of social willingness-to-pay threshold in Japan of 5 million ¥ or 33,333 USD per quality-adjusted life year gained, prophylactic naldemedine was found to be cost-effective. CONCLUSIONS: This is the first global cost-effectiveness analysis of prophylactic naldemedine in patients with cancer. Prophylactic naldemedine for opioid-induced constipation in patients with cancer initiating strong opioid therapy could be justifiable as an efficient use of finite health care resources.
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.