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Technical Brief - Final – Jul. 29, 2014

Decision Aids for Advance Care Planning

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Structured Abstract

Background

Advance care planning (ACP) honors patients' goals and preferences for future care by creating a plan for when illness or injury prevents adequate communication. ACP can also help patients assess their care options. Less than 50 percent of severely or terminally ill patients have an advance directive in their medical record, and physicians are only about 65 percent accurate in predicting patient preferences. Decision aids can provide a structured approach to informing patients about options and prompting them to document and communicate their preferences.

Purpose

We developed a technical brief on the state of practice and current research for decision aids for adult ACP and to provide a framework for future research and effort.

Methods

We interviewed Key Informants representing clinicians, attorneys, consumer advocates, experts in medical law and ethics, and decision aid researchers and developers. We searched online sources for information about available decision aids and conducted a literature search to identify available research on decision aids for adult ACP as an intervention.

Findings

Numerous decision aids are widely available but not represented in the empirical literature. Of the 16 published studies testing decision aids as interventions for adult ACP, most were proprietary or not openly available to the public. Decision aids tend to be constructed for the general population or for disease-specific conditions for narrower decision choices. Designing decision aids that are responsive to diverse philosophical perspectives and flexible to change as people gain experience with their personal illness courses remains an important concern. Future directions for effort include further research, training of ACP facilitators, dissemination and access, and the potential opportunities that lie in social media or other technologies.