J Palliat Med
· 2026 May · PMID 42175727
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BACKGROUND: Many pediatric health care professionals (HCPs) experience patient death and continue to carry out their clinical roles, including caring for the child's family immediately after being impacted by a child's d...BACKGROUND: Many pediatric health care professionals (HCPs) experience patient death and continue to carry out their clinical roles, including caring for the child's family immediately after being impacted by a child's death. Yet, HCPs are often overlooked as those who experience grief and require support in the coping process themselves. OBJECTIVES: To identify the variety of ways HCPs cope and the resources they utilize when dealing with a patient death. DESIGN: Qualitative study with one-on-one semistructured interviews. SETTING/SUBJECTS: HCPs at a U.S. tertiary children's hospital across different professional disciplines (medical decision makers, treatment implementers, and psychosocial support providers), different clinical environments (critical care units, medical units, emergency room, and outpatient), and a range of health care experience (from <1 year to >20 years). MEASUREMENTS: Data were analyzed using grounded theory and in an inductive manner. Factors and themes were identified in an iterative process. RESULTS: Briefly, 22 HCPs completed an interview. A multitude of factors influence HCPs' experience after pediatric patient death. Three major themes were identified: (1) HCPs rely on their professional community for processing and coping after patient death, (2) HCPs have a deep sense of duty toward each other and toward patients/families, which may drive their desire for knowledge and practice improvement, and (3) HCPs seek to make meaning following patient death. CONCLUSIONS: Health care institutions and their leaders have many opportunities to support HCPs after patient death.
Gamble A, Chammas D, Brenner KO
… +1 more, Temple S
J Palliat Med
· 2026 May · PMID 42175646
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Patients with serious medical illnesses may respond to the challenges of their illness in unique ways, shaped by personal, relational, and contextual factors. For many patients, depression and anxiety are common and may...Patients with serious medical illnesses may respond to the challenges of their illness in unique ways, shaped by personal, relational, and contextual factors. For many patients, depression and anxiety are common and may feature avoidance or withdrawal, negative expectations for outcomes, repetitive negative thinking (rumination and/or worry), sad mood, and/or irritability. These symptoms often arise from a complex and bidirectional interplay between a patient's emotions, thoughts, and behaviors. This dynamic system provides clinicians with multiple, clinically actionable entry points to foster patient engagement in treatment and coping with serious illness. This article illustrates how core principles from cognitive behavioral therapy (CBT) can inform serious illness communication, adapted for use by general palliative care clinicians in appropriate clinical contexts. Using a composite clinical case, we demonstrate the use of CBT principles as a way of organizing our clinical understanding of a patient who is feeling "stuck," from which CBT-informed techniques, such as guided discovery, cognitive restructuring, and behavioral experiments, can be implemented to reduce distress and promote adaptive coping.
BACKGROUND: Severe obesity (body mass index [BMI] ≥ 40 kg/m) is linked to multimorbidity, high hospitalization rates, ICU care, and increased mortality. The end-of-life care trajectory and the role of palliation for thes...BACKGROUND: Severe obesity (body mass index [BMI] ≥ 40 kg/m) is linked to multimorbidity, high hospitalization rates, ICU care, and increased mortality. The end-of-life care trajectory and the role of palliation for these patients remain poorly understood. OBJECTIVE: This study aims to describe the provision of palliative and end-of-life care to decedents with severe obesity at a large tertiary care medical center. DESIGN: Utilizing a cross-sectional design, this study conducted a chart review to compare decedents across three BMI categories. Demographic, clinical, and palliative care data were analyzed using descriptive statistics and logistic, negative binomial, and Poisson regression models. SETTINGS/SUBJECTS: The study comprised 202 adult inpatients who passed away in 2019 at a large tertiary care academic medical center in the United States. Decedents were categorized into BMI groups: nonobese/overweight (BMI 18-29.9 kg/m), Class I/II obesity (BMI 30-39.9 kg/m), and Class III (severe) obesity (BMI ≥ 40 kg/m). Data regarding clinical and palliative care were extracted through retrospective chart review. RESULTS: Median age at death was 68.8 years; 54.5% were female, and 84.2% were white. Higher BMI correlated with younger age ( < 0.0001). Decedents with severe obesity (BMI ≥ 40 kg/m) had 4.15 times higher odds of ICU utilization (95% CI: 1.55, 11.11), = 0.010. Across palliative care domains, no significant differences were observed in the documentation of goals of care discussions, prognosis, or symptom burden by BMI category. However, after adjustment for age, race, and gender, decedents with severe obesity (BMI ≥ 40 kg/m) had over three times higher odds of spiritual care documentation compared with those with BMI 18-29.9 kg/m (adjusted OR: 3.02, 95% CI: 1.19, 7.69, = 0.026). Documentation rates for psychosocial and cultural aspects of care, as well as structured process measures, showed no significant variation by BMI group. CONCLUSION: Decedents with severe obesity tended to be younger, more frequently received ICU care, and had increased documentation of spiritual support before death. In contrast, the provision of other core palliative care domains did not significantly differ across BMI categories. Further research is needed to explore care trajectories and palliative needs of severely obese patients.
BACKGROUND: Annually hundreds of thousands of children are impacted by a parent with cancer, and an estimated 25% have advanced stage disease. Programs to assist these families lag far behind the need. OBJECTIVES: To tes...BACKGROUND: Annually hundreds of thousands of children are impacted by a parent with cancer, and an estimated 25% have advanced stage disease. Programs to assist these families lag far behind the need. OBJECTIVES: To test the short-term efficacy of a telephone-delivered cancer parenting program for child-rearing parents with non-curable, advanced-stage cancer, the Enhancing Connections Palliative Care (EC-PC) Program. DESIGN: Two-group randomized controlled trial with assessment at three months. Experimental group parents received five educational counseling sessions by telephone at two-week intervals; participants in the alternative treatment control group were mailed a booklet about ways to communicate and support children's coping with parental cancer. SETTING: The program was delivered centrally from the study center. SUBJECTS: Fifty-six child-rearing parents with non-curable advanced cancer were enrolled from medical providers, service agencies, and cancer centers in the United States. MEASUREMENTS: Outcomes were parents' and children's depressed mood and anxiety, parenting skills, parenting self-efficacy, and children's behavioral-emotional adjustment. RESULTS: Between-group analysis using Mixed Models showed a significant effect that benefitted the experimental group: parenting skills significantly improved compared with controls. Results were clinically significant in both the intent to treat ( = 0.54, = 0.34) and per-protocol analysis ( = 0.64, = 0.018). Effect sizes were larger in the experimental group compared with controls. Within-group analysis reflected additional improvements in parents' self-efficacy, depressed mood, and children's behavioral-emotional adjustment. CONCLUSIONS: EC-PC is a telephone-delivered intervention that significantly improved parenting skills and offers a scalable approach to support families coping with advanced cancer. Larger trials are warranted.
J Palliat Med
· 2026 May · PMID 42159044
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OBJECTIVE: To compare end-of-life (EOL) care quality indicators for patients with gynecologic malignancies whose primary oncologist spoke their preferred language (language-concordant care) versus those who did not (lang...OBJECTIVE: To compare end-of-life (EOL) care quality indicators for patients with gynecologic malignancies whose primary oncologist spoke their preferred language (language-concordant care) versus those who did not (language-discordant care). METHODS: We conducted a retrospective chart review of patients with gynecologic malignancies who died between March 1, 2020, and May 30, 2024. The primary outcome was performance on National Quality Forum (NQF) quality indicators, a composite of six measures of aggressive EOL care. We used multivariable logistic regression to examine associations between language-discordant care and aggressive EOL care, adjusting for age, insurance status, and cancer stage at diagnosis. RESULTS: Briefly, 83 patients met inclusion criteria; 60 (72.3%) received care from a language-concordant oncologist and 23 (27.7%) from a language-discordant oncologist. Discordant patients were more likely to identify as Hispanic or Asian and to have Medicaid insurance. Aggressive EOL care, defined as an NQF score ≥1, occurred in 87.0% of discordant patients compared with 60.0% of concordant patients ( = 0.0174). After adjusting for age, insurance, and cancer stage, language-discordant care was associated with more than six-fold higher odds of aggressive EOL care (adjusted odds ratios: 6.05, 95% confidence intervals: 1.38-26.53). CONCLUSION: Language discordance between patients and oncologists was associated with greater likelihood of aggressive EOL care in gynecologic oncology. Addressing language barriers is essential to improving equity and aligning care with patients' goals at the end of life.
Mayan I, Hovav B, Yakov G
… +5 more, Katz G, Duchin O, Geva-Robinson S, Hunt LJ, Sabar R
J Palliat Med
· 2026 May · PMID 42136049
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BACKGROUND: In Israel, several policies have supported the growth of home-based hospice through a unique public-private care delivery and financing system. Yet, little is known about trends in home hospice use in Israel....BACKGROUND: In Israel, several policies have supported the growth of home-based hospice through a unique public-private care delivery and financing system. Yet, little is known about trends in home hospice use in Israel. OBJECTIVE: To describe 10-year trends in diagnosis, length of stay (LOS), and discharge patterns among home hospice patients in Israel. DESIGN: We conducted a retrospective cohort study of all patients admitted to Sabar Health's home hospice program between 2014 and 2023. Demographic and clinical data were analyzed by primary diagnosis: Cancer, dementia, end-organ failure, frailty, and neurodegenerative disease. Trends in enrollment, LOS, and live discharge rates were assessed over time. RESULTS: Among 25,673 patients, the proportion with cancer annually declined from 88.6% in 2014 to 57.8% in 2023, while admissions for dementia rose from 0% in 2014 to 19.6% in 2023. Median LOS increased from 20 to 35 days, with the longest durations observed among patients with dementia and neurodegenerative disease. Live discharge rates also rose, particularly in the dementia group from 12.2% to 20% over the observed period, with a growing share occurring after ≥180 days. CONCLUSIONS: Home hospice care in Israel has evolved significantly over the past decade, with increasing enrollment of patients with prolonged and uncertain illness trajectories. These trends emphasize the need for more adaptable eligibility frameworks, improved prognostic tools, and expanded caregiver support to meet the needs of a diversifying hospice population.
Weisner PA, Xia A, Onur D
… +3 more, Dahlgren I, Wilhelm K, Bogetz JF
J Palliat Med
· 2026 May · PMID 42121327
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BACKGROUND: Residents lack confidence caring for children with severe neurological impairment (SNI). The novel personal history tool, SHINE (Self, Happy, Ill, Names, and Extra), was codeveloped by families and residents...BACKGROUND: Residents lack confidence caring for children with severe neurological impairment (SNI). The novel personal history tool, SHINE (Self, Happy, Ill, Names, and Extra), was codeveloped by families and residents to strengthen residents' confidence in connecting with children with SNI and their families. OBJECTIVES: To describe SHINE's use among residents and its impact on residents' burnout, meaningful work, and confidence in caring for children with SNI. METHODS: Residents at an academic children's hospital in the United States received small-group teaching on the use of SHINE. Participants completed baseline, one-, and three-month post-intervention surveys, which included resident demographics; self-reported tool use; and resident burnout, meaningful work, and confidence in caring for children with SNI. Data were analyzed descriptively and using Pearson's chi-square tests. RESULTS: Briefly, 88% ( = 37/42) of eligible residents participated (25 interns [67%], 12 senior residents [32%]). After one month, respondents reported they found the tool helpful/very helpful ( = 11, 92%), were likely/very likely to continue using it ( = 11, 92%), and recommended it to future residents ( = 16, 100%). At baseline, residents reported low confidence caring for children with SNI (mean = 2.08, standard deviation (SD) : 0.84 on a 1 = low to 4 = high Likert scale). After one month, respondents reported improvements in (1) understanding the nonmedical needs of patients (mean increase: 0.71, SD: 0.85, value = 0.006) and (2) understanding life outside the hospital (mean increase: 0.94, SD: 0.87, value = 0.003). Respondents reporting higher use of the tool experienced larger gains. No significant differences were seen in burnout or meaningful work. CONCLUSION: SHINE may improve resident self-reported confidence in caring for children with SNI.
Nouri S, Lyles CR, Zapata C
… +10 more, Martinez R, Gonzalez J, Le V, Wang Y, Quinn M, Huang C, Perez-Vaughan C, Pantilat SZ, Ritchie CS, Sudore RL
J Palliat Med
· 2026 May · PMID 42099245
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BACKGROUND: Use of digital communication tools (e.g., telehealth, patient portals) is increasing in outpatient palliative care (OPC). OBJECTIVE: Assess patient/caregiver experiences with digital communication tools. DESI...BACKGROUND: Use of digital communication tools (e.g., telehealth, patient portals) is increasing in outpatient palliative care (OPC). OBJECTIVE: Assess patient/caregiver experiences with digital communication tools. DESIGN: Qualitative. SETTING/SUBJECTS: Inclusion criteria were age ≥18 years, English/Spanish/Cantonese-speaking, and ≥1 telehealth OPC visit in the prior year. If patients could not converse by phone, we interviewed their caregivers. MEASURES: We developed an interview guide using the Capability-Opportunity-Motivation-Behavior framework. We analyzed semi-structured interviews using thematic analysis. RESULTS: Among 32 participants, 10 were caregivers, 11 Spanish-speaking, 9 Cantonese-speaking. Theme 1: Video and in-person visits have important and distinct roles. Theme 2: Establishing a trusting rapport over video is possible. Theme 3: Engagement can be high with the patient portal despite poor usability. CONCLUSIONS: A flexible approach offering both video and in-person visits is ideal. Usability is a key factor in patient portal engagement. Our findings underscore the need to advocate for a permanent Medicare telehealth extension.
Guzman G, Cronin A, Stal J
… +15 more, Uno H, Xu L, Laurent CA, Fisher L, Cannizzaro N, Munneke J, Cooper RM, Lakin JR, Schwartz CM, Casperson M, Altschuler A, Kushi LH, Chao CR, Wiener L, Mack JW
J Palliat Med
· 2026 May · PMID 42095288
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BACLGROUND: Quality of end-of-life care for adolescents and young adults (AYAs) with cancer is often measured using administrative measures. METHODS: We surveyed 200 bereaved caregivers of AYAs (died 2003-2019 at age 12-...BACLGROUND: Quality of end-of-life care for adolescents and young adults (AYAs) with cancer is often measured using administrative measures. METHODS: We surveyed 200 bereaved caregivers of AYAs (died 2003-2019 at age 12-39 after receiving care at one of three sites) to elicit perspectives about care quality in 7 domains. RESULTS: Quality of care was highest for relationships with clinicians (63% caregivers considered all aspects high quality), and lowest for psychosocial and spiritual care (32%). Comfort and symptom management, quality of life, relationships with clinicians, medical care and treatment, and care needs and independence were rated as highly important to caregivers and AYAs, with all items exceeding a prespecified threshold for importance ( < 0.001); most communication and decision-making items also met this threshold, while most psychosocial and spiritual support items fell below this threshold. CONCLUSION: Caregivers affirmed priorities in AYA end-of-life care, which may help align care delivery with what matters most to patients and families.
Numata K, Higuchi M, Kashiwagi H
… +5 more, Kosugi S, Quest TE, Hauser J, Engel KG, Ouchi K
J Palliat Med
· 2026 May · PMID 42095285
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INTRODUCTION: Japan's aging population has increased emergency presentations among patients near the end of life, yet formal palliative care training for emergency physicians remains limited. The U.S.-developed Education...INTRODUCTION: Japan's aging population has increased emergency presentations among patients near the end of life, yet formal palliative care training for emergency physicians remains limited. The U.S.-developed Education in Palliative and End-of-Life Care for Emergency Medicine (EPEC-EM) program offers structured education in communication and symptom management. We piloted a cultural adaptation of selected modules for the Japanese emergency care context. METHODOLOGY: A multidisciplinary Japan-United States team adapted three modules (Trajectories & Prognoses, Breaking Bad News, and Dyspnea Management) through an iterative process involving preliminary redesign, pilot delivery, and refinement across four online sessions. DISCUSSION: Concepts such as goals-of-care discussions and communication around limiting resuscitation required clearer explanation for Japanese physicians. Iterative revisions improved clarity and cultural relevance. CONCLUSION: This pilot demonstrates the feasibility of culturally adapting EPEC-EM for Japan. The process provides a foundation for developing a tailored curriculum and informs future broader implementation.
Rajasekhara S, Bitar HN, Loggers ET
… +13 more, Norton K, Sam C, Case AA, Tulsky JA, Chwistek M, Epstein AS, Grossman SR, Nelson JE, Nortjé N, Papio J, Phung P, Kolosky J, McNiff Landrum K
J Palliat Med
· 2026 May · PMID 42095282
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PURPOSE: Effective communication about goals of care is critical in oncology but limited by insufficient training and system barriers. As part of a multicomponent intervention, the Improving Goal Concordant Care (IGCC) i...PURPOSE: Effective communication about goals of care is critical in oncology but limited by insufficient training and system barriers. As part of a multicomponent intervention, the Improving Goal Concordant Care (IGCC) initiative aimed to implement structured communication skills training (CST) for oncology clinicians. This study reports on the implementation and evaluation of CST across 10 dedicated cancer centers. PATIENTS AND METHODS: IGCC was a collaborative improvement project led by the Alliance of Dedicated Cancer Centers between 2020 and 2023. Centers selected or developed CST programs meeting IGCC criteria and adapted local implementation and enabling strategies. The primary measure was the percentage of eligible oncology clinicians completing CST (target ≥65%). Post-training evaluation and training impact surveys assessed clinicians' experience and perceived benefit of CST. RESULTS: Nine centers completed CST implementation, training 2271 of 2841 eligible clinicians (80%). CST completion rates at all but one site exceeded the target, as did rates for medical oncologists, hematological oncologists, and advanced practice providers. CST completion was higher when incentives or mandates were used. Post-training evaluations showed high satisfaction with aggregated top-box scores of 93% for training quality, 94% for recommending to colleagues, and 94% for likelihood to use skills. Training impact surveys administered 6-12 months after training suggested improved self-efficacy and reduced distress, with a strong correlation between self-efficacy improvement and distress reduction. CONCLUSIONS: IGCC demonstrated that CST can be effectively scaled across cancer centers and positively impact trained clinicians. Successful uptake was supported by leadership engagement, incentives, and mandates, while barriers included leadership transitions, time and resource constraints, and competing priorities. CST is a core component for advancing goal-concordant care.
Agosta M, Jimenez-Torres GJ, Bruera E
… +1 more, Carmack C
J Palliat Med
· 2026 May · PMID 42095281
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BACKGROUND: Family separation due to immigration policies may act as a powerful social determinant of psychological suffering in patients with advanced cancer. CASE DESCRIPTION: Two patients are described. Case 1: A late...BACKGROUND: Family separation due to immigration policies may act as a powerful social determinant of psychological suffering in patients with advanced cancer. CASE DESCRIPTION: Two patients are described. Case 1: A late teenage male with advanced cancer is unable to receive maternal support due to border denial, navigating severe pain and isolation with limited English proficiency and access to care. Case 2: A woman with advanced cancer whose husband and primary caregiver was deported, leaving her solely responsible for childcare, finances, and decision-making amid grief and institutional barriers. CONCLUSIONS: These cases illustrate how systemic separation from key attachment figures can amplify distress and complicate palliative care. Recommendations include virtual family involvement, designated in-person surrogate supporters, and integration of independent community advocates to support decision-making and emotional resilience.
Robbins-Welty GA, Childers J, Morgan E
… +10 more, Davis B, Newport K, Patterson B, Meyerson JL, Golden M, Certo M, Sajjad F, Conviser JH, Jones CA, Rosenberg L
J Palliat Med
· 2026 May · PMID 42080350
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Eating disorders (ED), particularly anorexia nervosa (AN), represent high-morbidity, high-mortality psychiatric illnesses with multisystem medical complications, frequent relapse, and substantial caregiver burden. As pal...Eating disorders (ED), particularly anorexia nervosa (AN), represent high-morbidity, high-mortality psychiatric illnesses with multisystem medical complications, frequent relapse, and substantial caregiver burden. As palliative care (PC) clinicians increasingly encounter patients with severe and enduring ED, they may be asked to help manage complex symptom distress, navigate treatment refusals, support families, and participate in values-based goals of care discussions amid prognostic uncertainty. At the same time, the emerging and contested discourse around "terminal anorexia nervosa" underscores the need for careful clinical reasoning, nuanced capacity assessment, and ethically rigorous, interdisciplinary deliberation. In this article, an interdisciplinary group of PC, psychiatry, psychology, and eating-disorder specialist clinicians presents a practical "Top Ten Tips" framework to support real-world care. Tips emphasize early recognition of countertransference and moral distress, medical severity assessment and refeeding risk, trauma-informed and harm-reduction approaches, task-specific decision-making capacity evaluations, communication strategies that prioritize values and meaning over labels, and collaboration with eating-disorder specialty teams, ethics consultation, and community resources. We aim to provide actionable guidance that strengthens PC clinicians' confidence and consistency when caring for patients with severe EDs.
Tang L, Yang L, Chen Z
… +9 more, Lei Y, Gao W, Liu J, Zhu S, Guo Z, He Y, Wen G, Zhao W, Qin C
J Palliat Med
· 2026 May · PMID 42080349
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BACKGROUND: Accurately estimating short-term survival in individuals receiving palliative care is crucial for guiding personalized clinical decisions. Existing tools often rely on subjective assessments and have limited...BACKGROUND: Accurately estimating short-term survival in individuals receiving palliative care is crucial for guiding personalized clinical decisions. Existing tools often rely on subjective assessments and have limited applicability. This study aimed to develop a simple, interpretable nomogram integrating objective biomarkers and functional status, applicable to a diverse population of end-stage patients. METHODS: A total of 167 patients who began working with the palliative care team were retrospectively reviewed, and the cohort was randomly partitioned into a 7:3 training (n = 117) and an internal validation set (n = 50). From an initial pool of 31 variables, independent prognostic factors were identified using least absolute shrinkage and selection operator (LASSO) Cox regression, while optimal thresholds for continuous measures were determined via maximally selected rank statistics. A nomogram was subsequently developed, and its performance was evaluated through time-dependent receiver operating characteristic analysis, calibration curves, and decision curve analysis, as well as sensitivity, specificity, positive predictive value, negative predictive value, and positive and negative likelihood ratios (LR+ and LR-) in the validation set at 30, 60, and 90 days. RESULTS: The LASSO model ultimately highlighted three principal predictors: C-reactive protein (CRP), estimated glomerular filtration rate (eGFR), and the Barthel Activities of Daily Living (BADL) score. Elevated CRP (hazard ratio [HR] = 1.005, = 0.01) and decreased eGFR (HR = 0.99, = 0.01) were independent risk factors for mortality. The nomogram demonstrated 30-/60-/90-day AUCs of 0.764/0.716/0.705 in the training set and 0.770/0.748/0.788 in the validation set. Calibration plots showed excellent agreement between predicted and observed survival, and Decision curve analysis indicated clinical net benefit across commonly used risk thresholds. In the validation set, the nomogram showed sensitivity/specificity of 69.05%/75.00%, 83.33%/87.50%, and 88.10%/87.50% at 30, 60, and 90 days, respectively; the corresponding LR+ values were 2.762, 6.666, and 7.048, and LR- values were 0.413, 0.191, and 0.136. CONCLUSIONS: We successfully developed and internally validated a simple, interpretable nomogram integrating CRP, eGFR, and BADL scores, capable of rapidly predicting short-term survival in palliative care patients. In addition to favorable discrimination and calibration, the model demonstrated clinically informative classification performance at 30, 60, and 90 days. The model is applicable to a diverse patient population and may assist in clinical decision-making and resource optimization.