Advance Care Planning, End-of-Life Preferences, and Burdensome Care
Authors: Wolff Jennifer L. , Scerpella Danny , Giovannetti Erin R. , Roth David L. , Hanna Valecia , Hussain Naaz , Colburn Jessica L. , Saylor Martha Abshire , Boyd Cynthia M. , Cotter Valerie , McGuire Maura , Rawlinson Christine , Sloan Danetta H. , Richards Thomas M. , Walker Kathryn , Smith Kelly M. , Dy Sydney M. ,   SHARING Choices Investigators, Anderson Ryan , Cockey Kimberly , Echavarria Diane , Funkhouser Tara , Nicholson Karyn Lee Carlson , Rebala Sri , Zhang Talan 
Published: December 2024

ImportancePrimary care is a key setting for advance care planning (ACP).ObjectiveTo test the effects of a multicomponent primary care–based ACP intervention (SHARING Choices) on documented end-of-life preferences and potentially burdensome care at end of life.Design, Setting, and ParticipantsThis pragmatic cluster randomized clinical trial in primary care practices from 2 health systems was conducted between March 2021 and April 2022. Adults 65 years and older with a scheduled in-person or telehealth visit with clinicians from participating practices were eligible for inclusion.InterventionsThe treatment protocol encompassed an introductory letter from the clinic, access to a designated facilitator trained in ACP, a person-family agenda-setting checklist, shared access to the patient portal, a mailed advance directive, and print education. The control protocol encompassed usual care.Main Outcomes and MeasuresPrimary outcomes included (1) new electronic health record–documented end-of-life preferences (advance directive or medical orders for life-sustaining treatment) at 12 months among those without documentation at baseline and (2) receipt of potentially burdensome care within 6 months of death among a subsample of Maryland residents with serious illness who died within 18 months of study entry from health information exchange data.ResultsThere were 19 practices in the intervention arm and 32 practices in the control arm. The study included 22 949 patients in the intervention group (13 575 women [59.2%]; mean [SD] age, 73.9 [7.2] years; 1674 [7.3%] with diagnosed dementia) and 41 966 in the control group (25 057 women [59.7%]; mean [SD] age, 74.0 [7.1] years; 3223 [7.9%] with diagnosed dementia). A total of 17 907 patients (27.6%) were Black, 1373 (2.1%) were Hispanic, 40 345 (62.2%) were White, and 5290 (8.2%) were another race (including American Indian or Alaska Native, Asian, and Native Hawaiian or Other Pacific Islander, and missing race). Grant-funded facilitators initiated 17 931 outreach attempts by phone (13 963 [77.9%]) and through the patient portal (3968 [22.1%]) to patients from intervention practices, and 1181 engaged in facilitator-led ACP conversations. New end-of-life preferences were documented for 2190 of 18 314 patients in the intervention arm (12.0%) and 2130 of 32 321 in the control arm (6.6%). This treatment effect was significant for the overall cohort (adjusted odds ratio, 2.15; 95% CI, 2.02-2.30) and present but attenuated for Black patients, those 75 years and older, and those diagnosed dementia. Among 1498 Maryland resident decedents, potentially burdensome care was higher in the intervention group (150 of 521 [28.8%] vs 204 of 977 [20.9%]; adjusted odds ratio, 1.40; 95% CI, 1.08-1.81).Conclusions and RelevanceIn this pragmatic cluster randomized clinical trial, the SHARING Choices intervention increased new documentation of end-of-life preferences but also increased potentially burdensome care at end of life. Mixed findings underscore the importance of comprehensive support for those with serious illness and prioritizing patient-relevant outcomes in ACP interventional research.Trial RegistrationClinicalTrials.gov Identifier: NCT04819191