Background: Decision making at the end of life is frequently complex and often filled with uncertainty. We hypothesized that people with limited health literacy would have more uncertainty about end-of-life decision making than people with adequate literacy. We also hypothesized that video images would decrease uncertainty.
Design: . Before and after oral survey. Participants. Subjects presenting to their primary care physicians.
Methods: Subjects were asked about their preferences for end-of-life care after they heard a verbal description of advanced dementia and were asked to rate the level of their uncertainty. Subjects then viewed a video of a patient with advanced dementia and were asked again about their preferences and uncertainty. Uncertainty was measured using the Decisional Conflict Scale with score ranges from 3 (high uncertainty) to 15 (no uncertainty). Health literacy was measured using the Rapid Estimate of Adult Literacy in Medicine, and subjects were divided into 3 literacy categories: low (0-45, 6th grade and below), marginal (46- 60, 7th-8th grade), and adequate (61-66, 9th grade and above).
Results: A total of 146 patients completed the interview. Prior to the video, the average uncertainty scores for subjects with low, marginal, and adequate health literacy were 10.8, 12.4, and 13.5, respectively (P < 0.0001). After the video, the 3 groups had similar uncertainty about their decisions. The average uncertainty scores for subjects with low, marginal, and adequate health literacy were 13.6, 14.1, and 14.5, respectively (P = 0.046).
Conclusions: Subjects with limited health literacy expressed more uncertainty about their preferences for end-of-life care than did subjects with adequate literacy. Our video decision aid improved end-of-life decision making by decreasing uncertainty regarding subjects' preferences, especially for those with limited literacy.