CONTEXT:Medicaid insures most children at the end of life and mandates concurrent hospice and curative care coverage. Uptake remains inconsistent, partly due to hospice workforce unfamiliarity with the benefit and concerns about compliance. OBJECTIVES:To evaluate whether a brief virtual workshop can shift hospice workforce self-perceived knowledge, attitudes, and behavior (KAB) regarding pediatric concurrent care, and to identify workforce-informed priorities for a Concurrent Care Toolkit. METHODS:Two national one-hour virtual workshops (clinical and administrative audiences) were conducted in April 2026 (n=264 attendees). A 7-item retrospective pre/post KAB survey was distributed post-session. McNemar's and Fisher's exact tests assessed changes and subgroup differences. Real-time chat input was analyzed to identify desired toolkit content. RESULTS:Thirty respondents completed the survey (11.4%). Perceived ability to contribute effectively increased (from 76.7% to 86.7%) and was higher among respondents from frequently enrolling hospices (100% vs. 62.5%, p=0.0205). Scores significantly decreased pre- to post survey across five of seven KAB items: understanding, resource awareness, perceived value, outcome improvement, and adaptability (p<0.05). Confidence explaining concurrent care to families declined nonsignificantly (from 86.7% to 63.3%). Attendee toolkit suggestions (n=26) emphasized needs in policy guidance, role clarity, best practices, and templates, including family-facing materials. CONCLUSION:A brief virtual workshop shifted hospice workforce perceptions of pediatric concurrent care, revealing gaps in baseline understanding and increasing awareness of implementation challenges. Findings informed development of a Pediatric Concurrent Care Toolkit and suggest that practical implementation resources, policy guidance, and family-centered communication tools may be needed to improve uptake and access to concurrent care.
CONTEXT:Adults with end stage kidney disease (ESKD) often spend years awaiting kidney transplantation, during which transplant listing status frequently changes from active to inactive - a phase marked by evolving expectations. The relationship of these changes to healthcare utilization and end-of-life care is poorly characterized. OBJECTIVE:To compare healthcare utilization and end-of-life outcomes by transplant eligibility and transplant listing status (active vs inactive) changes during the final year of life. METHODS:We conducted an observational study of 394 adults with ESKD (active, n=69; inactive, n=325) who underwent kidney transplant evaluation in a large healthcare system between 1/1/2017 and 6/30/2023, and died without transplantation by 6/30/2024. RESULTS:In the last year of life, patients had a median of two emergency department visits (interquartile range [IQR] 1-5), two hospitalizations (IQR 1-4), and 25 cumulative hospital days (IQR 1-51). Overall, 61% died in the hospital and 59% remained full code at death, and 18% were referred to hospice (median stay four days, IQR 1-8). Inactive status was associated with more emergency department visits (median 2 [IQR 1-5] vs 2 [IQR 0-3]; p=0.011) and hospitalizations (median 3 [IQR 1-5] vs 2 [IQR 1-4]; p=0.032) than active status, without differences in end-of-life outcomes. Periods of inactive status were associated with approximately two-fold higher hospitalization rates and greater time hospitalized than active periods. CONCLUSION:Adults with ESKD on dialysis experience intensive end-of-life care regardless of transplant eligibility. Switches to inactive status may represent a clinical inflection point to address prognostic understanding and transplant expectations.
CONTEXT:. Family caregivers are fundamental to enabling home-based end-of-life care, yet their well-being remains inadequately understood. While previous research has documented caregiver burden, a comprehensive understanding of the multidimensional factors shaping caregiver well-being across diverse contexts remains lacking. OBJECTIVES:. To synthesize qualitative evidence on the determinants of family caregiver well-being in home and community end-of-life care settings, developing an integrated conceptual understanding of facilitators and barriers across physical, psychological, social, and spiritual domains. METHODS:. Qualitative evidence synthesis using thematic synthesis methodology, following ENTREQ reporting guidelines. Seven databases (Embase, Scopus, CINAHL, PsycINFO, Web of Science, PubMed, Cochrane Library) were searched, yielding 7,933 records. After removing 3,319 duplicates and screening 4,647 records, 669 studies were assessed for eligibility. Nineteen primary qualitative studies from 13 countries were included. RESULTS:. Determinants of caregiver well-being operated across four interconnected levels: personal factors (coping strategies, health literacy, prior experience), relational factors (relationship quality, family dynamics, social support), care-related factors (intensity, symptom management demands, night-time needs), and environmental or systemic factors (service access, healthcare provider interactions, financial resources, cultural norms). Key findings revealed that caregiver well-being was fundamentally shaped by the quality of professional relationships, the availability of comprehensive support services, and the cultural context of caregiving obligations. CONCLUSION:. Caregiver well-being in home-based end-of-life care is determined by complex interactions between individual, relational, and systemic factors. Healthcare services must move beyond patient-focused models to genuinely partner with caregivers, recognizing their dual role as providers of care and individuals with their own support needs. In practice, this means offering a named point of contact, assessing caregivers across personal, relational, care-related, and systemic domains, and tailoring support to cultural context and disease trajectory.
TITLE:Time is of the Essence: Evaluating Short-Term Prognosis Tools at End of Life in Cancer and Non-Cancer Patients CONTEXT: Accurate end-of-life prognostication supports patient, family, clinician, and health system decision-making. The Palliative Prognostic Index (PPI), Palliative Performance Scale (PPS), and Short-Term Prognosis Signs (SPS) have been used in palliative care populations, particularly advanced cancer (1-3), but their utility for short-term prognostication in non-cancer patients is less established. OBJECTIVES:To compare PPI, PPS, and SPS, alone and in combination, for predicting death within 3 days among cancer patients, then evaluate the best-performing tools in non-cancer patients. METHODS:This retrospective study reviewed records of 290 in-unit decedents admitted to palliative care beds at a tertiary referral center and categorized by terminal diagnosis as cancer or non-cancer. Admission PPI, PPS, SPS, and combined models were evaluated using logistic regression in the cancer training dataset. Model performance was assessed using area under the curve (AUC) and Akaike Information Criterion (AIC). Fitted model parameters were applied to the non-cancer validation dataset. RESULTS:In 166 cancer patients, PPI + SPS performed best, with AUC 0.72 (95% CI, 0.64-0.80) and AIC 207.56. Among individual predictors, SPS performed best, with AUC 0.70 (95% CI, 0.62-0.77) and AIC 208.18. Among 124 non-cancer patients, PPI + SPS and SPS had similar AUCs of 0.69 (95% CI, 0.59-0.79) and 0.69 (95% CI, 0.59-0.78), respectively. CONCLUSION:PPI + SPS performed best in cancer patients, although improvement over SPS alone was modest. In non-cancer patients, SPS and PPI + SPS demonstrated similar, modest discrimination, supporting prospective validation in broader palliative care populations.
CONTEXT:Bereaved parents experience significant psychosocial distress following the death of a child. Effective family coping may help to mitigate mental health symptoms. OBJECTIVE:To evaluate the association between parent-reported satisfaction with family coping and anxiety, depression, and prolonged grief among parents whose children died from cancer. METHODS:We conducted a secondary analysis of surveys from bereaved parents at two timepoints: 6 months-2 years (timepoint 1, TP1) and 3-6 years (TP2) following the child's death. Surveys included an item from the Family Satisfaction Scale measuring parent satisfaction with their family's ability to cope with stress, which we dichotomized as satisfied versus dissatisfied. Validated measures of depression (PHQ-8), anxiety (GAD-7), and prolonged grief (PG-13) were included. Linear regression assessed the association between satisfaction with family coping and mental health symptoms. RESULTS:Parents (N=47) were mean aged 47.2 years (SD 9.1), predominantly white (85%) and female (70%). Parents had elevated rates of at least moderate depression (TP1 40%, TP2 32%), anxiety (TP1 21%, TP2 28%), and prolonged grief (TP1 46%, TP2 26%). At TP1, family coping satisfaction was associated with less depression (β = -4.63, 95% CI: -8.5, -0.8, p=0.020), anxiety (β = -4.86, 95% CI: -8.7, -1.1, p=0.013), and prolonged grief (β = -8.21, 95% CI: -14.9, -1.5, p=0.017). When controlling for TP1 mental health, TP1 family coping satisfaction was not associated with TP2 mental health. CONCLUSION:Parents' satisfaction with family coping was associated with fewer negative mental health symptoms in early, but not later, bereavement among bereaved oncology parents.
BACKGROUND:Frailty is common among patients with advanced cancer and increases risk for poorer outcomes. Frail patients may benefit from palliative care (PC) services. Limited data examine how frailty relates to PC delivery within safety-net systems. OBJECTIVES:To examine association between frailty and setting of PC initiation (inpatient consultation vs outpatient clinic referral) among patients with advanced cancer. Secondarily, we examined whether frailty was associated with PC exposure exclusively in the inpatient setting vs only outpatient referral. METHODS:Patients with advanced-stage solid tumor exposed to PC from January 2018 to July 2023 at Parkland Health were identified via electronic health record. Multivariate logistic regression examined associations between frailty level, using a modified electronic frailty index, and 1) initial PC exposure as inpatient consultation (vs outpatient referral) and 2) inpatient consultation-only (vs outpatient referral-only). Models adjusted for key covariates. RESULTS:Among 1,053 patients (44.3% female, 75% non-White, mean age: 57.7), 46.2% were mildly frail and 23.6% were moderately/severely frail. In multivariate regression, frailty was associated with greater odds of initiating PC as an inpatient consultation (v fit; moderate/severe frailty: adjusted Odds Ratio (aOR), 3.50 [95% CI 1.71 to 7.18]; mild frailty: aOR, 2.37 [95% CI 1.34 to 4.19]) and inpatient consultation-only (v fit; moderate/severe frailty: aOR 4.48, [95% CI 2.67 to 7.53]; mild frailty: (aOR 2.72, [95% CI 1.74 to 4.24]). CONCLUSION:Higher frailty was associated with inpatient PC initiation among patients with advanced cancer exposed to PC. These findings reflect the complex interplay of increased disease burden and access challenges faced by vulnerable cancer patients.
BACKGROUND:Pain is common in advanced cancer, and many people require opioid switching to achieve adequate analgesia. However, longitudinal patterns of switching across the complete illness trajectory remain poorly characterised. This study describes the incidence, indications, dose Sthresholds, and prescribing patterns of opioid switching from advanced cancer diagnosis to death. METHODS:This retrospective cohort study analysed opioid prescribing data for 200 adults with advanced cancer from diagnosis to death. Prescribing data were converted to standardised oral morphine equivalent daily dose (oMEDD). Switching frequency, dose thresholds, duration of opioid use, documented indications, and prescriber patterns were analysed using descriptive statistics. RESULTS:Opioid switching occurred in 58% of patients (n=116), with some requiring up to four switches. Each successive switch occurred after substantial dose escalation during treatment on a given opioid, where starting doses of each successive switch approximately doubled: 20mg oMEDD for the first opioid, 30mg at first switch, 60mg at second, and 180mg at third switch. Median duration on each opioid progressively shortened with each switch: 39 days (IQR 9-98), 25 days (IQR 6-103), and 18 days (IQR 5-53) for the first, second, and third switchess respectively. Inadequate analgesia was the predominant indication (58% of switches). Palliative care clinicians initiated an increasing proportion of switches (31% of first opioids; 89% of third). CONCLUSION:Opioid switching is common across the advanced cancer trajectory, characterised by progressive dose escalation and shortening duration of use with each successive switch. These findings highlight the importance of access to multiple opioid options and timely specialist palliative care involvement.
BACKGROUND:The Edmonton Symptom Assessment Scale (ESAS) Total Symptom Distress Score (TSDS) is widely used in palliative care to assess symptom burden. While minimal clinically important difference (MCID) values have been established by Hui et al., validation across different patient populations is essential. OBJECTIVE:To validate the MCID values for the ESAS TSDS using data from two randomized controlled trials of medicinal cannabis in advanced cancer. METHODS:We analysed data from 186 patients with incurable cancer. The Patient Global Impression (PGI) scale served as the anchor, with "minimally improved" defining improvement and "minimally worse" defining deterioration. We employed anchor-based methods (sensitivity-specificity approach and within-patient change approach) and distribution-based methods (0.3 and 0.5 standard deviations) to validate MCID values. RESULTS:For improvement, the within-patient change method yielded an MCID of -6.6 points (SD 11.5) for the TSDS, consistent with prior research. The sensitivity-specificity approach identified an optimal cutoff of a decrease of at least 4 points, and distribution-based estimates were 4.25 and 7.08 points. The sample size for deterioration was too small to draw meaningful conclusions. Individual symptom domains showed varying patterns of change. CONCLUSION:Our findings for improvement are consistent with previously established MCID values for the ESAS TSDS, providing supportive evidence for its use as an outcome measure in palliative care research.
CONTEXT:Palliative care is often misunderstood as end-of-life care. The internet may shape public understanding. OBJECTIVE:To describe the visual content of internet images of palliative care. METHODS:We conducted a visual content analysis of internet images retrieved using the term "palliative care". Searches were conducted on April 1, 2022, in Toronto, Canada, using six search engines; the first 150 photographic images from each engine were included. Image characteristics were coded by two independent coders using a standardized codebook. Coded characteristics were quantified and compared using Chi-square tests. Two investigators independently reviewed the coded data and original images, and identified overarching themes. RESULTS:After deduplication, 335 unique images from 377 websites were analyzed. Websites were mostly from the US (173/369 [46.9%]) or Canada (92/369 [24.9%]); 160/369 (43.4%) were affiliated with hospice/palliative care programs. Four themes emerged: hand-holding, enclosed setting, cheerful comfort care, and passive dependency. Hand-holding appeared in 203/335 images (60.6%). Most identifiable settings were indoors (162/171 [94.7%]); of 67 hospital scenes, 47 (70.1%) were at the bedside and 4 (6.0%) outpatient. Healthcare providers and family members (73.3% and 73.8% women, respectively) cheerfully provided comfort care (e.g., offered food/drink). Compared to healthcare providers, patients were more often older adults (2/157 [1.3%; 0.2%-4.5%] vs. 136/157 [86.6%; 80.3%-91.5%]) who were lying/sitting; only 2/157 (1.3%, 0.2%-4.5%) patients were standing, compared to 68/157 (43.3%, 35.4%-51.5%) healthcare providers. CONCLUSION:Internet images reinforce stereotypes and misperceptions about palliative care as passive end-of-life care. Changing internet imagery may help reframe perceptions and enable more timely palliative care.
CONTEXT:Empathic communication promotes trust in patient-provider relationships. As healthcare integrates artificial intelligence (AI) into patient communication, we have yet to understand how these models' communication compares to that of physicians. OBJECTIVES:Our primary objectives were to examine patient preferences for AI-generated vs. palliative care physician-generated empathic statements addressing fear and anxiety around cancer treatment, and to analyze associations between linguistic features and patient preferences. METHODS:We conducted a secondary analysis of the PALL-AI trial, a randomized controlled survey comparing cancer patients' preferences of AI- to physician-generated empathic statements. Physicians and AI were provided the same prompt with a maximum sentence length. Patient preferences for each statement were measured in blinded surveys. We analyzed sentiment of the statements using the Valence Aware Dictionary and Sentiment Reasoner (VADER) and the National Research Council Canada (NRC) Emotion Lexicon. We evaluated associations between sentiment scores and patient preferences using Spearman's correlation coefficients. RESULTS:A total of 105 patients completed blinded surveys, preferring the AI-generated statement 72.4% of the time. VADER sentiment analysis showed all three AI statements displayed positive sentiment, while all three physician statements displayed negative sentiment. Controlling for statement length, AI statements used twice as many positive words as human statements. However, they contained a similar number of negative words. Of the eight NRC emotions, "trust" and "joy" demonstrated the strongest correlations with patient preference. CONCLUSION:Patients preferred AI-generated statements around cancer care over those from palliative care physicians when standardized for prompt and statement length. Analysis shows AI-generated statements contain more positive language which may be the factor driving patient preference toward AI.
BACKGROUND:. In recent decades, autonomy and self-determination in Amyotrophic Lateral Sclerosis (ALS), have gained increasing attention, and Advance Care Planning (ACP) has been incorporated into ALS guidelines. In Italy, Law 219 emphasizes the role of ACP in respecting patients' healthcare preferences. However, longitudinal data on ACP prevalence and impact remain limited. AIM:. To assess the prevalence of ACP discussions in a population of ALS patients, their effectiveness in end-of-life management, and the impact of Law 219/2017. METHODS:. Demographic and clinical data from the PARALS Register (2008-2020) were retrospectively examined, with particular focus on ACP discussions, tracheostomy preferences, and end-of-life outcomes. RESULTS:. Of 1219 ALS patients, 655 (53.7%) had ACP discussions, with 90.8% concordance between expressed choices and outcomes. The ACP prevalence increased over time from 51.6% to 61.94% (p = 0.025). Cognitive impairment, including fronto-temporal dementia and intermediate cognitive-behavioural impairment, and absence of NIMV use were negatively associated with ACP (p = 0.029 and p < 0.001). Older age was associated with tracheostomy placement (p < 0.001). ACP discussion was positively associated with gastrostomy placement, Palliative Care activation, and home death. CONCLUSIONS:. ACP plays a crucial role in ALS care, with high alignment between expressed choices and outcomes. Cognitive impairment reduced ACP participation, highlighting the need for earlier, tailored interventions. The ACP increase over the last decade reflects a growing emphasis on patient autonomy in Italy. Further efforts are needed to expand ACP adoption in ALS care, to support self-determination despite cognitive decline and disease progression.
INTRODUCTION:End-of-life delirium causes substantial distress for patients and families. Personalized sedation goals (PSGs) offer a patient-centered approach to delirium management by defining treatment targets based on caregiver preferences. We compared haloperidol, lorazepam, haloperidol plus lorazepam, and placebo in achieving caregiver-defined PSGs for agitated end-of-life delirium. METHODS:This preplanned secondary analysis used data from a multicenter, double-blind, double-dummy, parallel-group randomized clinical trial conducted from July 16, 2019, to June 8, 2023, with 30-day follow-up. Patients with advanced cancer and persistent agitation despite nonpharmacologic measures and standard-dose haloperidol were enrolled from three acute palliative care units in the United States and Taiwan. Participants received haloperidol dose escalation, lorazepam rotation, combination therapy, or placebo. Caregivers defined PSGs at enrollment. A personalized response was defined as a Richmond Agitation-Sedation Scale score within ±1 category of the PSG. RESULTS:Of 245 eligible patients, 111 were enrolled and 72 included in the primary analysis. Caregiver-defined PSGs were available for 67 patients included in this secondary analysis. At 24 hours, PSG achievement differed significantly across groups (p = 0.02): lorazepam 10/13 (76.9%), combination therapy 8/13 (61.5%), placebo 7/13 (53.8%), and haloperidol 3/14 (21.4%). Compared with haloperidol, lorazepam (odds ratio = 12.2; 95% CI = 2.0-75.1; p = 0.01) and combination therapy (odds ratio = 5.9; 95% CI = 1.1-32.0; p = 0.04) were more likely to achieve caregiver-defined PSGs. CONCLUSIONS:Lorazepam-based regimens were more likely than haloperidol alone to achieve caregiver-defined sedation goals, supporting their role in goal-concordant care for agitated end-of-life delirium.
CONTEXT:Patients who use a language other than English (LOE) face barriers to communication and goal-concordant care, which can be improved through the conduct and comprehensive documentation of goals of care (GOC) conversations. OBJECTIVE:To compare GOC documentation between LOE-preferring and English-preferring patients. METHODS:We evaluated GOC documentation written in the last 6 months of life for adults who died between 10/1/2021 and 10/1/2024 at a tertiary health system. To control for factors which may impact communication, patients with a non-English language preference were matched by race and ethnicity to English-preferring patients using propensity matching. Content analysis was used to compare key components of GOC documentation in the notes. Statistical comparisons involved chi-square tests. RESULTS:Among 244 patients (122 LOE, 122 English), we reviewed 687 notes. Patients were on average 65.8 years old, 49.2% female, 24.6% Caucasian, and 50.8% Hispanic. GOC component frequency was similar between patient groups. Although cultural/spiritual needs and clinician view of prognosis were more frequently documented for LOE-preferring patients (p = 0.006, 0.009, respectively), overall documentation of cultural, spiritual, and psychosocial needs was less than 50%. While both groups had a median of 5 out of 10 components documented across notes, LOE-preferring patients often had their first note written over a month closer to death than English-preferring patients. CONCLUSION:LOE-preferring patients were more likely to have their GOC notes written closer to death and while hospitalized compared to English-preferring patients. Additional interventions are needed to support earlier GOC conversations and improve comprehensive documentation.
BACKGROUND:Long-term care facilities (LTCFs) care for residents with frailty, dementia, and progressive illness, yet palliative care needs are often recognized late. The Modena Local Health Authority developed a pathway to improve identification and integration with the Local Palliative Care Network. MEASURES:Baseline measures from seven LTCFs and a province-wide survey of 53 LTCFs included SPICT-estimated palliative care needs, individualized palliative care plans, place of death, and data completeness. After implementation, measures included resident characteristics, diagnoses, vital status, place of death, and hospitalizations before and after referral. INTERVENTION:Procedure DS.DO.171 used the surprise question, SPICT, Palliative Prognostic Index, multidisciplinary review, goals-of-care discussions, referral to the Home Palliative Care Unit, and definition of care complexity. Second-level support was provided by a general practitioner with special interest in palliative care, working with a palliative care nurse and network professionals. OUTCOMES:From April to December 2024, 405 residents were enrolled; mean age was 87.1 ± 8.5 years and 70.9% were female. Dementia, neurological disease, and cancer were most frequent. Among 250 deaths, 245 (98.0%) occurred in LTCFs. Mean hospitalizations decreased from 0.96 to 0.04 after referral. CONCLUSIONS/LESSONS LEARNED:An organization-wide palliative care pathway in LTCFs appears feasible and may support end-of-life care in facilities, although findings require cautious interpretation.
