Planning Advance Care Together (PACT) to Improve Engagement in Advance Care Planning among Advanced Cancer Patients

/ABSTRACT Engagement in advance care planning (ACP), which includes having end-of-life (EoL) conversations and completing advance directives (ADs) (e.g., living will, health care proxy), has been shown to improve the quality of care and reduce suffering at the end of life. However, less than half of advanced cancer patients engage in ACP or complete ADs. One commonly overlooked barrier to ACP engagement and AD completion is a lack of acknowledgment that the majority of cancer patients report ACP as a social process in which they want to engage multiple loved ones and family members in their decision-making process. Dr. Shen's prior work suggests that patients frequently report involvement of family members as a critical concern and need for engaging in ACP and that 70.7% report their EoL care treatment preferences being shaped around concerns about their family members. Based on this pilot work and prior work indicating a patient preference to engage in ACP as a social process, this study aims to develop and pilot test a website [Planning Advance Care Together (PACT)] designed to improve advanced cancer patients' and caregivers' engagement in patients' ACP, presence of ACP discussions, completion of ADs, and receipt of goal-concordant care. The goals of this study are to: (1) refine and field-test a mobile application intervention (PACT) using an iterative design approach, “Think Aloud” exercises, and usability protocols; (2) evaluate the feasibility, acceptability, usability, satisfaction, and user engagement of the intervention among advanced cancer patients and their caregivers; (3) test the preliminary efficacy of the intervention on patients' and caregivers' level of engagement in ACP, documented ACP conversations, and patients' completion of ADs (primary outcomes); and patients' and caregivers' perceived social support and family functioning as well as patients' receipt of goal-concordant care (secondary outcomes); and (4) evaluate process measures in a post-intervention interview. An added proposed extension aim is to conduct a process evaluation to identify multi-level barriers and facilitators as well as best pathways to implementation of PACT. To achieve this newly proposed aim, we will conduct 16 focus groups (5 participants each) with patients with advanced cancer (n=20), caregivers/support persons of patients with advanced cancer (n=20), providers (oncologists, nurses, palliative care, psychologists, social workers) (n=20), and healthcare system leaders (n=20) to identify barriers, facilitators, and best pathway(s) for implementation (embedding within EPIC/MyChart, direct referral from providers, and/or direct-to-consumer marketing). Grounded in established theories of decision-making science, the proposed project takes the novel approach of utilizing web-based health technology to integrate loved ones into patients' ACP decision-making. Project Number: 4R37CA246703-07 | Fiscal Year: 2025 | NIH Institute/Center: National Cancer Institute (NCI) | Principal Investigator: Megan Shen | Institution: FRED HUTCHINSON CANCER CENTER, SEATTLE, WA | Award Amount: $744,065 | Activity Code: R37 View on NIH RePORTER: https://reporter.nih.gov/project-details/11047473