Robinson, Maisha T.

Background: Shared Decision Making in palliative care encompassing patient-clinician collaboration has shown potential for improved patient outcomes. However, the impact of decision aids intended to support palliative care decision making discussions across clinical care settings remains uncertain. Aim: To assess the impact of shared of decision aids on decision making, clinical outcomes, and quality of life for patients with palliative care needs and their caregivers. Design: Systematic review and meta-analysis of randomized controlled trials, reported according to PRISMA, with overall evidence quality assessed using GRADE. Data sources: Ovid MEDLINE (all segments), EMBASE, Cochrane CENTRAL, Cochrane Database of Systematic Reviews, and Scopus, from inception through September 20, 2024, without restrictions on publication date, sample size, or language. Eligible studies were randomized controlled trials that included adult patients with palliative care needs or their caregivers, using any form of decision aids. Outcomes encompassed decision-related, clinical, and quality of life measures. Results: Sixteen randomized controlled trials were included. Participant ages ranged from 44 to 85 years. Predominant decision aids were videos or printed materials addressing goals of care and treatment options, with aims that included improving understanding of prognosis and supporting values clarification. Decision aids significantly improved decision-related knowledge (SMD: 0.40, 95% CI: 0.14–0.67, p = 0.003) and lowered preference for cardiopulmonary resuscitation (OR: 0.28, 95% CI: 0.20–0.40, p < 0.001). They showed no significant impact on decisional conflict, satisfaction, or regret. Conclusion: Evidence regarding the effectiveness of decision aids in palliative care decision making is limited and of low overall quality, with observed improvements primarily in patient knowledge and changes in stated treatment preferences rather than established improvements in decision quality or values-concordant care. Future research should prioritize integration into comprehensive shared decision making frameworks, cultural adaptations, and larger-scale studies to enhance patient-centered outcomes.

Abstract Background Prion diseases are universally fatal causes of rapid progressive dementia owing to the formation and spread of prions throughout the brain. Palliative care focuses on improving quality of life for patients with serious or advanced medical conditions. Timely access to palliative care is central to the care of patients with prion disease and other progressive neurodegenerative diseases. We sought to evaluate palliative care utilization and mode of delivery in patients with prion disease. Method Clinical data were extracted from the electronic medical records of patients with definite or probable prion disease diagnosed and managed across the Mayo Clinic Enterprise from January 2012 to August 2023. We systematically evaluated the frequency of symptoms and signs likely to benefit from palliative care and considered the relationship between these features and palliative care resource utilization, method of delivery, and outcomes. Result 172 patients with symptomatic prion disease were identified. 165 (94.8%) patients experienced ≥1 symptom/sign likely to benefit from palliative care, yet only 113 (65.7%) patients accessed palliative care resources during the illness course (hospice care: 39.7%; palliative care consultation: 14.9% inpatient, 6.9% outpatient; both: 3.4%). Lack of referral by the diagnosing clinician was the most common reason (55.9%) patients did not receive palliative care services. Early and predominant language dysfunction, behavioral changes, constipation, and emergency department visits or hospital admissions were independently associated with greater odds of referral for palliative care services. Goals of care (i.e., living environment, nutritional and hospitalization plans) and advanced care plans (i.e., healthcare surrogates, living will, code status, hospice) were more likely to be documented in patients receiving palliative care consultations (88.6% and 93.2%, respectively) versus hospice care alone (7.8% and 14.5%, respectively; p <0.001). Conclusion More than a third of patients with prion disease did not receive palliative care resources despite a high prevalence of symptoms/signs likely to benefit from palliative care. These findings highlight an opportunity to enhance the care of patients with prion disease by promoting early access to palliative care resources that may support symptom management, enhance caregiver support, and reinforce patient autonomy by clarifying goals of care and advance care planning.

Objective The pattern and timing of palliative care utilisation and end-of-life characteristics in extracorporeal membrane oxygenation (ECMO)-supported patients remain underused. We wanted to share our centre’s experience. Methods This is an institutional review board-approved retrospective study of 45 patients who underwent ECMO at a large ECMO centre in North America between January 2013 and July 2018. Results Only 28.9% of the ECMO patients received in-hospital palliative care consultation at a median of 18 days (IQR 12–31) after hospitalisation and 10.5 days (IQR 1–28) from ECMO initiation. 1-year mortality was high, with 44% dying during hospitalisation and an additional 13% within the following year. Patients experienced prolonged hospitalisations (median hospital length of stay: 39 days, IQR 19–89) and exhibited high rates of tracheostomy (53%) and renal replacement therapy (60%). Most end-of-life cases involved the withdrawal of life-sustaining therapy during ECMO, yet only 53% had a completed living will. Conclusion Our study underscores the need for early initiation of palliative care consultation to enhance symptom management, advance care planning, caregiver support and quality of life for ECMO patients and their families.

Background . Despite the potential of palliative care (PC) to enhance the quality of life for patients with advanced dementia, there is limited knowledge of its inpatient utilization patterns. This study investigated inpatient PC consultation utilization patterns and evaluated its impact on hospital length of stay (LOS) and medical costs among older patients diagnosed with Alzheimer’s Disease and Related Dementia who were at a high risk of mortality (ADRD-HRM). Methods . Using the 2016-2019 National Inpatient Sample database, we conducted multivariable logistic regression analyses to identify individual and hospital characteristics influencing PC consultation utilization. We subsequently performed generalized linear models to estimate LOS (using Poisson distribution) and hospital charges (via log-transformation). Results . Our sample encompassed 965,644 hospital discharges (weighted n = 4,828,219) of patients aged 65 years and above with ADRD-HRM. Among them, 14.6% received inpatient PC. There was a notable uptrend in PC consultation utilization from 13.3% in 2016 to 16.3% in 2019 ( p trend<.001). Factors positively influencing and associated with PC utilization included patients that are older, non-Hispanic White, with higher income, receiving care from teaching hospitals, and facilitated with greater bed capacity (all P < .05). Although patients who received PC were more likely to have 3.0% longer LOS ( P < .001), they had 19.2% lower hospital charges ( P < .001). Conclusions . PC substantially reduced hospital expenditures for older patients with ADRD-HRM, but the prevalence remained low at 14.6% in the study period. Future studies should explore the unmet needs of patients with lower sociodemographic status and those in rural hospitals to further increase their PC consultation utilization.

OBJECTIVES: To evaluate the 30-day postoperative mortality and palliative care consultations in patients that underwent surgical procedures in the United States before and after Medicare Access and Children’s Health Insurance Program Reauthorization Act (MACRA) implementation. DESIGN: Retrospective, Observational cohort study. SETTING: Secondary data were collected from the U.S. National Inpatient Sample, the largest hospital database in the country. The time span was from 2011 to 2019. PATIENTS: Adult patients that electively underwent 1 of 19 major procedures. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: The primary outcome was cumulative postoperative mortality in two study cohorts. The secondary outcome was palliative care use. We identified 4,900,451 patients and categorized them into two study cohorts: PreM: 2011–2014 (n = 2,103,836) and PostM: 2016–2019 (n = 2,796,615). Regression discontinuity estimates and multivariate analysis were used. Across all procedures, 149,372 patients (7.1%) and 156,610 patients (5%) died within 30 days of their index procedures in the PreM and PostM cohorts, respectively. There was no statistically significant increase in mortality rates around postoperative day (POD) 30 (POD 26–30 vs 31–35) for both cohorts. More patients had inpatient palliative consultations during POD 31–60 compared with POD 1–30 in PreM (8,533 of 2,081,207 patients [0.4%] vs 1,118 of 22,629 patients [4.9%]) and PostM (18,915 of 2,791,712 patients [0.7%] vs 417 of 4,903 patients [8.5%]). Patients were more likely to receive palliative care consultations during POD 31–60 compared with POD 1–30 in both the PreM (odds ratio [OR] 5.31; 95% CI, 2.22–8.68; p < 0.001) and the PostM (OR 7.84; 95% CI, 4.83–9.10; p < 0.001) cohorts. CONCLUSIONS: We did not observe an increase in postoperative mortality after POD 30 before or after MACRA implementation. However, palliative care use markedly increased after POD 30. These findings should be considered hypothesis-generating because of several confounders.