This research from America reports that 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.
It argues that decision aids can help patients to thoughtfully consider and document their preferences and assess important relationships. A well-considered and well-communicated preference helps health professionals to feel comfortable about the ethics of providing or withholding treatments that affect survival and help provide closure to family and loved ones who will live with the consequences.
Commissioned by the Agency for Healthcare Research and Quality Effective Health Care Program, to provide a broad overview of current use of and research related to decision aids for adult advance care planning, the review identifies a number of examples of general Advance Care Planning Decision Aids publicly available on the Internet, as well as some specifically for people with serious or advanced illness.
Decision aids for advance care planning can promote a staged approach with goals and outcomes that vary according to the patient’s circumstances.
Patients with established conditions need to consider knowledge of their prognosis in advance care planning decisions. High-quality decision aids could inform patients about their prognosis and allow them to consider potential implications of health care decisions. Ideally, patients would be given information on the expected natural history of their condition, the efficacy of various life-sustaining interventions to change the course or experience of illness, and potential harms.
The authors note that prognosis and planning are even more difficult for diseases with less certain trajectories (for example, heart disease or dementia vs. metastatic cancer) and that advance care planning ideally would be an ongoing process rather than a one-time decision and would be revised as the patient’s familiarity with the health condition increases.
Decision aids need to recognize diverse philosophical perspectives, be sensitive to cultural and spiritual traditions, and support nuanced decisions. Decision aids that facilitate choices for comfort care and life-sustaining treatments are effective if the resulting choices are consistent with the informed consumer’s values and wishes.