Educational Resources and Self-Management Support to Engage Patients in Advance Care Planning: An Interpretation of Current Practice in the US

Background Educational resources and decision aids help patients, their care partners and health care providers prepare for and confidently engage in Advance Care Planning (ACP). Incorporating ACP resources as part of a self-management approach may lead to fuller engagement with ACP beyond identifying a surrogate decision-maker, towards supporting a person to identify their values and goals and to communicate them with their care partners and health care providers. Objective To examine the use of educational resources and decision aids to support self-management of ACP in 11 health systems across the US. Methods This study was a qualitative interview study examining barriers and facilitators to ACP. Guided by interpretative description and the chronic care model, we sought to describe how health care stakeholders (clinicians and administrators) and patients use ACP resources to support engagement with ACP. Results 274 health care stakeholders were interviewed, and 7 patient focus groups were conducted across 11 health systems. The majority of participants reported using resources to support completion of preference documentation, with fewer participants using resources that promote more engagement in ACP. ACP resources were reported as valuable in preparing for and complementing a complex, interpersonal, and interprofessional process. Barriers to using resources included a lack of a defined workflow and time. Conclusion Our data suggest that ACP resources that promote engagement are valued but under-utilized in practice. The use of ACP resources with an inter-professional team and a self-management approach is a promising strategy to mitigate the barriers of ACP implementation while improving engagement in ACP.