Decision Aids for Advance Care Planning: An Overview of the State of the Science
Annals of Internal Medicine
Mary Butler, PhD, MBA; Edward Ratner, MD; Ellen McCreedy, MPH; Nathan Shippee, PhD; and Robert L. Kane, MD
Ann Intern Med. Published online 29 July 2014 doi:10.7326/M14-0644
Advance care planning honors patients' goals and preferences for future care by creating a plan for when illness or injury impedes the ability to think or communicate about health decisions. Fewer than 50% of severely or terminally ill patients have an advance directive in their medical record, and physicians are accurate only about 65% of the time when predicting patient preferences for intensive care. Decision aids can support the advance care planning process by providing a structured approach to informing patients about care options and prompting them to document and communicate their preferences. This review, commissioned as a technical brief by the Agency for Healthcare Research and Quality Effective Health Care Program, provides a broad overview of current use of and research related to decision aids for adult advance care planning. Using interviews of key informants and a search of the gray and published literature from January 1990 to May 2014, the authors found that many decision aids are widely available but are not assessed in the empirical literature. The 16 published studies testing decision aids as interventions for adult advance care planning found that most are proprietary or not publicly available. Some are constructed for the general population, whereas others address disease-specific conditions that have more predictable end-of-life scenarios and, therefore, more discrete choices. New decision aids should be designed that are responsive to diverse philosophical perspectives and flexible enough to change as patients gain experience with their personal illness courses. Future efforts should include further research, training of advance care planning facilitators, dissemination and access, and tapping the potential opportunities that lie in social media or other technologies.
Advance care planning is a way to inform care choices for a patient who cannot express a preference and a planning tool that helps patients begin to prioritize their treatment goals. The preferences of seriously ill patients for life-sustaining interventions depend on their care goals. Some prioritize living longer to achieve life goals, whereas others may not wish to be kept alive when meaningful recovery or a particular quality of life is no longer possible (1–3). Religious and spiritual values and beliefs also affect goals of care (4–5). Advance care planning helps to honor patient preferences and goals if incapacitating illness or injury prevents adequate communication (6).
Decision aids help patients consider health care options. Such aids for advance care planning support the 3 key components of the process: learning about anticipated conditions and options for care; considering these options; and communicating preferences for future care, either orally or in writing. The most important information a decision aid can provide to a decision maker depends on the patient's current health status and the predictability of illness trajectories (Figure). A healthy person may benefit most from general decision aids focused on choice of health care proxies and goals of care for hypothetical catastrophic situations, such as after loss of function or cognition or terminal illness. For patients with a life-threatening illness, appropriate aids focus on decisions to accept, withhold, or terminate specific treatments. Advance care planning with decision aids takes place in various settings; it is often done outside clinical settings, particularly among healthy older adults. Nonclinical partners in shared decision making may include family members, caregivers, or attorneys or other professionals.