BACKGROUND: Documentation of goals-of-care conversations (GOCC) in the electronic health record (EHR) is considered a cornerstone of high-quality cancer care. When done well, it can support treatment decisions that are i...BACKGROUND: Documentation of goals-of-care conversations (GOCC) in the electronic health record (EHR) is considered a cornerstone of high-quality cancer care. When done well, it can support treatment decisions that are informed by patients' values, preferences, and priorities and serve as a critical communication tool across the health care team. Although inpatient and palliative care settings have been studied extensively, less is known about GOCC documentation in outpatient oncology. AIM: We examined the prevalence of GOCC documentation among older adults with advanced cancer in the outpatient setting and identified patient-level factors related to documentation. DESIGN: We conducted a retrospective cohort study using natural language processing (NLP)-assisted chart review to identify documentation of GOCC. Advanced cancer was defined using a validated algorithm based on billing codes. Univariate analyses employed Mann-Whitney tests for continuous variables and chi-square tests for categorical variables. SETTING/SUBJECTS: The cohort included older adults aged >65 years with advanced cancer who received outpatient treatment at an academic cancer center in Boston, MA, between 2016 and 2019. RESULTS: Among 7743 patients, 43% had at least one instance of GOCC documentation. The median age was 72 years, and 51% were female. Compared with patients without documentation, those with documentation were older (median 73 vs. 71 years, < 0.001), more often single (34% vs. 29%), and less often partnered (65% vs. 70%, < 0.001). Mortality rates were also higher among patients with documentation: 6-month mortality was 23% versus 13% ( < 0.001), and 12-month mortality was 44% versus 23% ( < 0.001). No significant differences were observed by gender, race, or Hispanic ethnicity. CONCLUSIONS: Fewer than half of older adults with advanced cancer had documented GOCC in outpatient oncology. This gap underscores the need for scalable interventions to ensure that values and preferences are initiated and documented in routine care.
INTRODUCTION: End-stage liver disease (ESLD) carries a high symptom burden and unpredictable trajectory, yet palliative care (PC) is often introduced late. Timely, needs-based PC integration remains inconsistent, and int...INTRODUCTION: End-stage liver disease (ESLD) carries a high symptom burden and unpredictable trajectory, yet palliative care (PC) is often introduced late. Timely, needs-based PC integration remains inconsistent, and interprofessional perspectives are poorly understood. METHODS: We surveyed 55 clinicians across five specialties (transplant hepatology, transplant surgery, general gastroenterology, general internal medicine, and PC) at a single academic institution in Chicago, IL. Domains included timing of PC referral, symptom management comfort, terminology preferences, perceived barriers, and role clarity. A cross-sectional survey administered via REDCap evaluated attitudes toward PC integration and interdisciplinary role delineation in ESLD care. RESULTS: Eighty-nine percent of respondents endorsed PC for transplant-ineligible patients, although opinions varied on pretransplant integration. Significant specialty-based differences emerged in perceived barriers, symptom management confidence, and sense of PC ownership. PC clinicians reported the highest confidence across symptom domains, while transplant providers reported discomfort with advance care planning and complex symptom management. Divergent views on the use of long-term abdominal drains and role ownership highlighted variability in clinical priorities, practice patterns, and thresholds for intervention. CONCLUSIONS: Despite broad support for PC in advanced ESLD, integration remains limited by role uncertainty, training gaps, and stigma. Specialty-specific discomfort with holistic assessment and symptom management underscores the need for targeted education and co-management models. Enhanced collaboration and role clarity are critical to ensure equitable PC access across the ESLD trajectory.
Barry C, Craske M, Hawkes M
… +5 more, Peryer G, Bunning K, Heywood R, Patel M, Shepherd V
Palliat Med
· 2026 Jun · PMID 42041108
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BACKGROUND: Palliative care research must be inclusive of those with impairments in decision-making to provide a representative evidence base for care and treatment. When capacity to consent to research is impaired, prox...BACKGROUND: Palliative care research must be inclusive of those with impairments in decision-making to provide a representative evidence base for care and treatment. When capacity to consent to research is impaired, proxies may be asked to support decision-making. However, little is known about how proxies navigate this role or what supports their involvement. AIM: To identify, describe, and synthesise empirical evidence on the use of proxies to support the involvement of adults with impaired mental capacity in palliative care research. DESIGN: A scoping review conducted and reported following the Joanna Briggs Institute guidance. Data were charted and are reported descriptively, organised by themes. DATA SOURCES: Ovid Medline, Ovid EMBASE, EBSCO CINAHL, EBSCO Academic Search Ultimate, Scopus, Westlaw, HeinOnline, APA PsycINFO, and Social Sciences Citation Index for studies published between 2007 and 2025. RESULTS: Proxy decision-making was found to be context-dependent, shaped by consent models and varying across jurisdictions. Proxies' confidence and willingness to act were influenced by their understanding of consent requirements, perceived research value and power dynamics. Significant international variation exists in the legal and ethical frameworks that guide proxy involvement. CONCLUSION: Proxy decision-making in research is complex, involving legal, ethical, emotional, relational, and contextual factors. Demands on proxies are particularly pertinent in a palliative care context, where substituted decision making must be balanced alongside personal values and emotional burden. To promote inclusion, accessible, jurisdiction-specific guidance, training for proxies and researchers, and ongoing support mechanisms are essential. In a palliative care context, advance research planning might support proxy decision-making.
Palliat Med
· 2026 Jul · PMID 42041103
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BACKGROUND: Dignity is a cornerstone of palliative care and represents a complex, multidimensional concept that warrants further conceptual integration. AIM: To synthesise evidence regarding patients' experiences of dign...BACKGROUND: Dignity is a cornerstone of palliative care and represents a complex, multidimensional concept that warrants further conceptual integration. AIM: To synthesise evidence regarding patients' experiences of dignity in palliative care, with a particular emphasis on cultural influenceVs. DESIGN: An integrative review was conducted following Whittemore and Knafl's framework. DATA SOURCES: Six databases (CINAHL, MEDLINE, ProQuest Sociological Abstracts, PsycINFO, Scopus, and Web of Science) were searched from inception to 28 February 2025. Targeted hand-searches of key journals were performed between March and June 2025. RESULTS: A total of 32 articles were included. Patients' understandings varied but dignity was commonly described as "being treated like a human being." Three themes were identified: (1) Inner experience, encompassing physical and psychological experiences, self-worth, resilience, and spirituality; (2) Relational and interactional dynamics, including personal autonomy and self-determination, and social relationships and support systems; and (3) Macro-structural determinants, comprising healthcare systems and delivery, as well as economic and socio-political circumstances. Cultural values shaped the perception and preservation of dignity. In collectivist societies, dignity was intricately linked to family, community, religion, and social harmony, whereas in individualist societies, dignity centred on autonomy and control over end-of-life decisions. Immigrants negotiated dignity through interactions between cultural values and healthcare expectations within host countries. CONCLUSIONS: This review provides an integrated understanding of the factors shaping patients' perceptions of dignity in palliative care across cultures. The findings could usefully inform patient-centred and culturally sensitive palliative care practices that uphold dignity and promote well-being at the end of life.
Goodman W, Bhattarai M, Shahzad H
… +3 more, Chen S, Burke S, Allsop M
Palliat Med
· 2026 Jul · PMID 42036948
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BACKGROUND: Telemedicine may improve access and delivery of palliative care in low and middle-income countries (LMICs). Despite increasing adoption and diverse applications, there is limited understanding of their use in...BACKGROUND: Telemedicine may improve access and delivery of palliative care in low and middle-income countries (LMICs). Despite increasing adoption and diverse applications, there is limited understanding of their use in palliative care. AIM: Determine the challenges, enablers and key characteristics of telemedicine interventions targeting outcomes delivered in palliative care in LMICs. DESIGN: A scoping review guided by the JBI methodology. DATA SOURCES: Six databases (MEDLINE, EMBASE, PsycInfo, Global Health, CINAHL and IEEE Xplore) were searched for reports published between 2003 and August 2025. WHO IRIS and clinical trial registries were searched in March 2026. Forward and backward citation searching was also conducted. RESULTS: Of the 7938 reports identified from database searches, 21 met the inclusion criteria. Additional searches of WHO IRIS and clinical trial registries did not identify any additional reports. Most interventions focused on telemonitoring ( = 14), commonly delivered via telephone ( = 8) and involving a doctor/clinician ( = 8). Four studies measured only objective levels of engagement, one study assessed only subjective engagement, while three studies measured both objective and subjective engagement, but the measures used across these studies were heterogeneous. Three studies identified challenges to engaging with telemedicine interventions, including poor digital literacy, lack of a physical exam, and poor internet connectivity. CONCLUSIONS: Telemedicine demonstrates emerging, context-specific potential to support access to palliative care in LMICs, although the current evidence base is limited and concentrated in middle-income and cancer-focused settings. Future research should adopt theoretically informed, system-integrated approaches with consistent evaluation to ensure equitable and sustainable delivery.
Lange AV, Hess E, Barón AE
… +5 more, Paden G, Morgan B, DeGroot L, Campbell EG, Bekelman DB
J Palliat Med
· 2026 Apr · PMID 42025450
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BACKGROUND: Providing and measuring goal-concordant care is a priority. OBJECTIVE: Determine the effect of a nurse and social worker palliative telecare team intervention on goal concordance and participants' understandi...BACKGROUND: Providing and measuring goal-concordant care is a priority. OBJECTIVE: Determine the effect of a nurse and social worker palliative telecare team intervention on goal concordance and participants' understanding of care focus. DESIGN: Randomized clinical trial of a palliative telecare intervention called Advancing Symptom Alleviation with Palliative Treatment (ADAPT). As part of ADAPT, a study nurse and/or social worker had a serious illness conversation via phone. SETTING/SUBJECTS: Participants had cardiopulmonary disease and poor quality of life in two VA health systems. MEASUREMENTS: Goal concordance was measured with two questions modified from the SUPPORT study, using a Likert scale from 0 (I prefer medical care that focuses on extending life) to 10 (I prefer medical care that focuses on relieving pain and discomfort). Participants could choose, "I am unsure" when asked about the focus of their current medical care. Goal concordance was defined when participants reported the same preference and focus of care. Using linear mixed modeling, changes in proportions of concordant and unsure participants were examined from baseline to six months. RESULTS: The 306 participants enrolled in the ADAPT trial were predominantly white (80.1%) and male (90.2%), with a mean age of 68.9 (standard deviation: 7.7) years. There was no difference in the change in proportions of concordant participants in the intervention group compared to usual care (adjusted difference in change in proportions: 4.2%; = 0.67) or the change in proportions of unsure participants (adjusted difference in change of proportions: 6.2%; = 0.42). CONCLUSION: The intervention did not influence goal concordance or the proportion of participants unsure of care focus.
BACKGROUND: The American Society of Clinical Oncology (ASCO) convened a multidisciplinary panel in 2017, resulting in patient-oncologist communication guidelines. Ideally, these conversations should be documented in the...BACKGROUND: The American Society of Clinical Oncology (ASCO) convened a multidisciplinary panel in 2017, resulting in patient-oncologist communication guidelines. Ideally, these conversations should be documented in the medical records. However, chart review for communication topics is inefficient. Large language models (LLMs) present a computational method for identification of communication domains in clinical notes, subsequently providing feedback for clinicians. OBJECTIVES: The purpose of this study was to develop an approach using LLMs to identify communication domains in unstructured free text notes, validating against gold-standard chart review. SETTING/SUBJECTS: The study population included 134 clinical notes from 30 patients with advanced cancer seen in June 2024 at one of seven Dana-Farber Cancer Institute clinics (Boston, MA). We used a HIPAA-secure artificial intelligence tool based on GPT-4o to develop an LLM prompt for identification of communication domains. MEASUREMENTS: We used standard performance metrics to compare the LLM prompt to chart review for all six communication domains. A hallucination index was calculated to assess false information that may be produced by LLMs when applied to large data sets. RESULTS: Across communication domains, compared to chart review, the note-level LLM analysis achieved sensitivity ranging from 0.43 to 1.0, specificity ranging from 0.32 to 0.99, and accuracy ranging from 0.51 to 0.99. The average hallucination index for all domains was low. LLM abstraction required approximately 7 seconds per note, compared to 5-7 minutes with chart review. CONCLUSION: LLMs have the potential to identify ASCO communication domains. Future directions include applying the method for quality improvement efforts, such as generating feedback for oncologists on topics that may require follow-up.
BACKGROUND: Advance care planning (ACP) improves end-of-life care and communication; however, its long-term effects on bereaved family members remain underexplored. OBJECTIVES: This study aimed to (1) examine how bereave...BACKGROUND: Advance care planning (ACP) improves end-of-life care and communication; however, its long-term effects on bereaved family members remain underexplored. OBJECTIVES: This study aimed to (1) examine how bereaved family members' participation in a deceased cancer patient's ACP influenced their own ACP behavior and (2) explore its impact on their interpersonal relationships and values regarding life and death. DESIGN: A nationwide, cross-sectional, anonymous questionnaire survey was conducted as part of the Japan Hospice and Palliative Evaluation Study 4. SETTING/SUBJECTS: Participants were bereaved family members of cancer patients who had received care at designated palliative care units in Japan and had died before January 31, 2018. MEASUREMENTS: The survey assessed bereaved individuals' ACP behavior (thinking about, discussing, or documenting preferences), discussion partners, and psychological outcomes. Logistic regression analyses identified factors associated with ACP engagement. RESULTS: Of the 639 questionnaires returned (response rate: 63.5%), 544 valid responses were analyzed. Among respondents, 75% had thought about their own ACP, 42.1% had discussed it, and 7.9% had documented it. Participation in a loved one's ACP was significantly associated with thinking about (odds ratio [OR] = 5.07) and discussing (OR = 2.46) one's own ACP. Conversations were linked to increased trust, emotional understanding, and reduced anxiety. CONCLUSIONS: Participation in a loved one's ACP was associated with greater engagement in bereaved individuals' own ACP, along with enhanced interpersonal trust and reflection on life and death. These findings support viewing ACP as a relational and life-oriented process.
Henneghan A, Wertheimer J, Kim S
… +4 more, Gresham G, Shirazipour CH, Jones B, Asher A
J Palliat Med
· 2026 Apr · PMID 42011526
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OBJECTIVE: Spiritual distress is common in those with metastatic cancer. We evaluated the sustained effects of an empirically anchored 6-week psychoeducation program, Growing Resilience And CouragE (GRACE), on spiritual...OBJECTIVE: Spiritual distress is common in those with metastatic cancer. We evaluated the sustained effects of an empirically anchored 6-week psychoeducation program, Growing Resilience And CouragE (GRACE), on spiritual well-being, quality of life, and psychosocial symptoms. METHODS: Primary and secondary outcomes were assessed at baseline (T0), immediately after GRACE (T1), 1 month after GRACE (T2), and 6 months later (T3). Intervention and waitlist control groups (from the randomized clinical trial) were combined for this analysis. A generalized additive model for location, scale, and shape was used. RESULTS: Data from 54 women with metastatic breast cancer who received GRACE were analyzed. All outcomes (spiritual well-being, quality of life, and psychosocial symptoms) significantly improved at T1, T2, and T3 compared to baseline ( < 0.001). CONCLUSION: GRACE is beneficial for the spiritual well-being, quality of life, and psychosocial well-being of women with metastatic breast cancer, and these benefits appear to be sustained at 6 months post-intervention.
Schmidt US, Van Rickstal R, Van Goethem V
… +15 more, Bakker E, Pilch M, Connolly M, D'Alton P, Jordan C, Larkin PJ, May P, Bristowe K, de Leo S, De Vleminck A, Cohen J, Northouse L, Hudson P, DIAdIC Author Group, Guerin S
Palliat Med
· 2026 May · PMID 42011078
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BACKGROUND: Supporting psychoeducational functioning for advanced cancer patients and informal caregivers (dyads) can be challenging. Self-managed digital interventions offer a possible cost-effective alternative but oft...BACKGROUND: Supporting psychoeducational functioning for advanced cancer patients and informal caregivers (dyads) can be challenging. Self-managed digital interventions offer a possible cost-effective alternative but often face low engagement. AIM: To examine engagement with the iFOCUS intervention and to understand why it failed to improve the expected outcomes. DESIGN: iFOCUS, a four-session digital self-managed 12-week intervention for dyads, was tested in six European countries as part of a randomized controlled trial. However, it showed no effects on outcomes. Using process evaluation data with 121 dyads, measures of engagement were examined to identify how engagement predicts dropout and to identify associations with patient/caregiver characteristics, post-intervention outcomes, and patient/caregiver evaluation of the intervention. RESULTS: Measures of engagement showed variation in associations with participant characteristics. Lower engagement with the intervention among dyads at the outset, was associated with greater odds of dropout and engagement with the intervention decreased as the dyads progressed. Patients' level of education and caregivers' baseline emotional function, self-efficacy, dyadic coping, and knowledge of cancer were associated with engagement. However, there was no consistent evidence that engagement was associated with outcomes or evaluation of the intervention. DISCUSSION: While we identified several associations between engagement and patient/caregiver characteristics, there were inconsistencies in the extent and nature of the associations, with more evidence that baseline characteristics impacted engagement, than evidence that engagement impacted on outcomes. However, using multiple measures of engagement did provide additional insights. A key recommendation from this study is the need for consideration of assessments of engagement for digital interventions.
BACKGROUND: Peripheral edema is a common but under-researched complication in advanced cancer, significantly impacting patients' quality of life. It can result from various causes beyond lymphatic dysfunction, necessitat...BACKGROUND: Peripheral edema is a common but under-researched complication in advanced cancer, significantly impacting patients' quality of life. It can result from various causes beyond lymphatic dysfunction, necessitating a mechanism-based management approach. AIM: This study aims to address knowledge gaps by characterizing the causes, treatments, and outcomes of peripheral edema in patients with advanced cancer. DESIGN: A predefined protocol was registered on the Open Science Framework, using a five-step scoping review methodology. Eligible studies included adult patients with peripheral edema related to advanced cancer, its treatments, or comorbidities. Searches were conducted in MEDLINE, Embase, and the Cochrane Library from 2010 to June 30, 2023. Two independent reviewers screened titles, abstracts, and full texts; extracted data, and assessed the quality of observational studies using the Effective Public Health Practice Project's tool. RESULTS: Of 426 publications, 31 studies met inclusion criteria: 10 observational studies (2,128 patients), 5 case series (79 patients), and 16 case reports (16 patients). Most studies involved patients with limited prognoses. The 10 observational studies had moderate (6/10) or weak (4/10) quality ratings. Among these studies, the reported causes included overhydration, malignant inferior vena cava obstruction, and multiple risk factors. Seven observational studies addressed treatments, often using mechanism-guided (and sometimes multimodal) strategies, encompassing stenting, parenteral fluid and medication management including diuretics, and decongestive physical therapy interventions. CONCLUSIONS: Peripheral edema in patients with advanced cancer arises from diverse and often overlapping mechanisms, and the available limited evidence from this scoping review suggests that mechanism-based interventions can yield meaningful short-term improvements in symptom burden. Targeted management, such as hydration or medication management, decongestive therapy, or inferior vena cava stenting, produced measurable benefits. These findings underscore the need for standardized assessment and more prospective studies to strengthen the evidence base for individualized, mechanism-driven care for peripheral edema in the advanced cancer population.
BACKGROUND: An estimated 4.4 million people in Europe require palliative care annually, a number expected to rise with population aging. Telepalliative care (TPC) has been practiced in various settings over the past two...BACKGROUND: An estimated 4.4 million people in Europe require palliative care annually, a number expected to rise with population aging. Telepalliative care (TPC) has been practiced in various settings over the past two decades. The Telepal program was developed to provide individualized palliative care, aiming to improve health-related quality of life (HRQoL) and enhance access to health care professionals. OBJECTIVE: This study examined whether the Telepal program influenced HRQoL, symptom burden, perceived health, and patients' sense of security among patients receiving specialized palliative care (SPC). We hypothesized that Telepal would improve HRQoL and sense of security compared with standard SPC. METHOD: In this randomized controlled trial conducted in Denmark, 182 patients referred to SPC were followed for up to 26 weeks. The control group (CG) received routine SPC, while the intervention group (TPG) received routine SPC plus TPC. HRQoL and symptom burden were assessed weekly using the European Organization for Research and Treatment of Cancer Quality of life Questionnaire-Core 15-Palliative Care and at weeks 1 and 4 using the EuroQol Five-Dimension Five-Level Questionnaire, including the Visual Analog Scale for perceived health. Sense of security was assessed twice weekly using a Likert scale. RESULTS: HRQoL, symptom burden, and sense of security worsened over time in both groups, with no significant group differences. The TPG reported consistently higher pain, while perceived health declined in the CG but remained stable in the TPG. CONCLUSION: Telepal did not prevent declines in HRQoL or sense of security; however, perceived health remained more stable in the TPG. Telepal may serve as a complementary component of palliative care, particularly for patients facing barriers to in-person visits.
CONTEXT: Pain control for localized cancer lesions remains challenging, with systemic opioids often providing inadequate relief with significant side effects. Compounded morphine gel has shown efficacy, but its high-cost...CONTEXT: Pain control for localized cancer lesions remains challenging, with systemic opioids often providing inadequate relief with significant side effects. Compounded morphine gel has shown efficacy, but its high-cost limits use. OBJECTIVE: To explore the feasibility of a patient-mixed 0.125% morphine gel recipe, providing patients with an accessible, affordable option for improved pain control. METHODS: This study recruited 13 cancer patients with painful cutaneous lesions, instructing them to mix 100 mg of liquid morphine in 80 g of hydrogel to produce a 0.125% morphine gel and apply it directly to the painful area. Likert scales assessed ease of mixing and satisfaction, while the Edmonton Symptom Assessment Scale assessed pain scores. The total oral morphine equivalent per day (OMED) was compared before and after gel use. RESULTS: Briefly, 91% of participants found the gel easy to mix and helpful for pain control, with pain scores decreasing by 61.8%. OMED was also significantly reduced ( = 0.008). CONCLUSION: This small study suggests that self-mixed 0.125% morphine gel is a safe, effective, and affordable option to control pain in cancer lesions. Larger studies are needed to confirm these results.