Population-Based Pragmatic Trial of Advance Care Planning in Primary Care in the University of California Health System

Abstract

Introduction: Varying intensity of advance care planning (ACP) interventions at the population level has not been compared among seriously ill patients in primary care. This project will implement, test, and disseminate realworld scalable ACP interventions among primary care clinics across three University of California Health systems. The three ACP interventions are (1) distribution of an advance directive (AD) with targeted ACP messaging, (2) the AD, messaging, plus prompting patients to engage with the Prepare For Your Care website (PREPARE), and (3) the AD, messaging, PREPARE, plus Care Coordinator engagement with patients and clinicians. Methods: We will identify a population cohort of seriously ill primary care patients and implement the ACP interventions using electronic health record (EHR) patient portals and postal mailings. Forty-five clinics across the three health systems will be cluster randomized to one of the three ACP interventions. The primary outcome for the population cohort is AD or Physician Orders for Life-Sustaining Treatment documentation in the EHR. A subset of the population cohort will be surveyed to assess patient-centered outcomes, including care consistent with goals at baseline, 12 months, and 24 months. Caregivers will be interviewed if patients are unable to be surveyed or die. ACP documentation, goal concordant care, and among decedents, health care utilization will be compared among intervention arms. Study Implementation: Challenges and Contributions: The project is guided by a Study Advisory Group and Community Advisory Groups at each site to ensure rigorous patient-centered methods and consistency of implementation. Intervention fidelity will be evaluated using the Reach, Efficacy, Adoption, Implementation, and Maintenance (RE-AIM) framework. Challenges to implementation of this three-site health system trial and to intervention fidelity stem from site/clinic/system cultures, increasing attention to end-of-life care from payers and regulators, and growing pressures by health systems to implement ACP interventions. Stakeholder engagement is required to ensure consistent interventions across sites.

Deconstructing the Complexities of Advance Care Planning Outcomes: What Do We Know and Where Do We Go? A Scoping Review

“…In consideration for future intervention research, most studies in this review did not target the community, the healthcare system, or policy “pillars.” Communities are where social norms about ACP are defined and where larger educational interventions could be helpful 146‐149 . For health systems, electronic records and patient portals may provide additional opportunities to message patients, surrogates, and clinicians 150‐152 . Furthermore, policy and legislation changes may help to simplify ACP legal requirements and help make ACP billing easier and more widespread 140,142 .…”

“…That said, given the current heterogeneity of ACP outcomes, future research should consider using some standardized outcomes so that trial findings can be compared, as some studies are attempting 154,155 . Finally, pragmatic trials measuring implementation strategies in real‐world settings are needed, and several are underway 152,154‐156 . For effective ACP interventions, an impartial repository, as used in other fields, 157 may help disseminate the interventions to clinical champions.…”

Evaluation of Neighborhood Socioeconomic Characteristics and Advance Care Planning Among Older Adults

“…We extracted the following patient characteristics from the EHR: health care use (number of PCP, specialty outpatient, emergency department [ED], and inpatient encounters in the prior year), advanced illness (using a previously validated measure), 36 cognitive impairment (defined by UCSF OPHAC using diagnostic and billing codes), and sociodemographic characteristics (age, sex, race/ ethnicity, preferred language, insurance). Missing data were minimal: race/ethnicity data were missing for 288 patients (2.2%), and insurance data were missing for 36 patients (0.2%).…”

Advance Care Planning Among Users of a Patient Portal During the COVID-19 Pandemic: Retrospective Observational Study

“…Portals thus offer a particularly accessible platform for patients and care partners to learn about COVID-19 treatment options and communicate goals of care with their providers. Over the last 5 years, our research team has partnered with health care system information technology experts, patients, caregivers, and providers to develop, test, and implement patient portal advance care planning strategies [ 20 - 24 ]. Specifically, the UCHealth patient portal offers patients the ability to learn more about advance care planning through web-based resources and provides the ability to create an electronically signed MDPOA form to choose a medical decision maker.…”