A Novel Website to Prepare Diverse Older Adults for Decision Making and Advance Care Planning: A Pilot Study

Abstract

Context We have reconceptualized advance care planning (ACP) as a multi-step process focused on preparing patients with skills needed for communication and in-the-moment decision making. Objectives To operationalize this paradigm, we created an easy-to-use ACP website (prepareforyourcare.org) based on a theoretical framework of behavior change and pilot-tested its efficacy to engage older adults in ACP. Methods At baseline and one week after viewing the PREPARE website, we assessed behavior change in ACP using a validated survey that includes Process Measures (knowledge, contemplation, self-efficacy, and readiness, 5-point Likert scales) and Action Measures (yes/no whether an ACP behavior was completed). We also assigned participants into behavior change stages (i.e., precontemplation, contemplation, preparation, action, maintenance) and determined the percentage of participants who moved from precontemplation at baseline to higher stages at one week. We also assessed PREPARE ease-of-use (10-point scale, 10 being the easiest). Changes were assessed with paired t-tests and McNemar’s tests. Results Participants’ mean age was 68.4 years (SD 6.6) and 65% were non-white. Process Measures average Likert scores increased from 3.1 (0.9) to 3.7 (0.7), P <0.001. Action Measures did not change significantly. However, precontemplation significantly decreased for most actions, (e.g., talking to doctor about desired medical care, 61% to 35%, P<0.003), with a mean decrease of 21% (range, 16%-33%). PREPARE was rated a 9 out of 10 (±1.9) for ease-of-use. Conclusion A new, patient-centered ACP website that focuses on preparing patients for communication and decision making significantly improves engagement in the process of ACP and behavior change. A clinical trial of PREPARE is currently underway.

Advance Care Planning Meets Group Medical Visits: The Feasibility of Promoting Conversations

“…Patients receive an agenda for both visits, a personal copy of their EHR highlighting current advance care planning documentation, if any, and a blank medical durable power of attorney form. Facilitators use educational materials to guide the group discussion on advance care planning, including the Conversation Starter Kit, 20 videos from the PREPARE website 24 (http://www. prepareforyourcare.org) that demonstrate a family's conversation, advance directives, and other resources, such as out-of-hospital orders.…”

“…20 PREPARE is a website designed to help individuals prepare for medical decision making and has been shown to help older adults engage in advance care planning. 24 Two of the authors, H.D.L. and R.S., established a licensing agreement between their respective institutions to support the use of PRE-PARE within this program.…”

Financial Incentives to Increase Advance Care Planning Among Medicaid Beneficiaries: Lessons Learned From Two Pragmatic Randomized Trials

“…For the provider-delivered patient incentive study, the control condition included: 1) a packet with educational information (PREPARE pamphlet with instructions to log-in to the research version of the PREPARE website) 3 and 2) verbal encouragement by their PCP to do PREPARE and to follow-up within three months to discuss ACP. a $100 to provider for documenting ACP conversation with a member via ''ACP attestation form'' (1 attestation per 12 months allowed).…”

“…1,2 ACP includes a range of behaviors including documentation of medical wishes in an advance directive and/or having discussions with surrogate decision makers and medical providers. 1,3 Although there is some controversy regarding the effectiveness of written advance directive documents, 4 a systematic review and meta-analysis of English language randomized trials concluded that ACP interventions focused on discussions improved concordance between patients' preferences and end-of-life (EOL) treatment. 5 The Centers for Disease Control and Prevention reports that only 30% of U.S. adults have some form of advance care plan, 6 and low-income, minority, and low-literacy populations are the least likely to have engaged in ACP discussions or documentation.…”

Am I Dying Doctor?": How End-Of-Life Care is Portrayed in Television Medical Dramas

“…According to this theory, willingness to engage in ACP behaviour is determined by knowledge and beliefs about ACP and expectations about treatment outcomes [9][10][11]. Increased public awareness of the importance of timely end-of-life discussions may facilitate patients' and loved ones' willingness to be engaged in end-of-life care discussions and may improve patient empowerment [12,13].…”