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Understanding "End of Life" Medical Decisions

By Rebecca S. Sudore, M.D., and Gloria Mayer, R.N., Ed. D.

(Page 2 of 3)

Studying Communications Effectiveness

Researchers at SFGH-UCSF had identified many patients with limited literacy skills and had been developing tools to allow them to better understand the medical system. As a clear need arose to help patients understand their health care choices at the end-of-life, researchers at SFGH-UCSF decided not only to design an easy to read advance health care directive, but also to test its efficacy. To do this, the medical center, in cooperation with the San Francisco Department of Health, conducted a study. Researchers at SFGH-UCSF conducted a randomized trial to determine whether an advance directive written at a fifth grade reading level and containing graphics that explain the text would be associated with higher rates of patient acceptability and self-efficacy with treatment decisions when compared to a standard California Advance Health Care Directive form. Study patients were randomly assigned to review and attempt to complete either the standard California Advance Directive form (AD-Standard) or an advance directive (Easy-AD) written at a fifth grade reading level that contained culturally appropriate graphics and the same legal content as the AD-Standard. Acceptability with the form, self-efficacy about treatment decisions, and comprehension of health care choices were then measured. After completing this assessment, subjects in each group then reviewed the alternative form and reported which form they preferred.

Study participants randomized to the Easy-AD form reported higher acceptability over all as compared to the Standard Advance Directive, rating the Easy-AD easier to complete (80% vs. 62%) and easier to understand (83% vs. 58%).

Participants randomized to the Easy-AD form were also more likely to report greater self-efficacy with treatment decisions, reporting that the form made it easier to choose desired medical care (84% vs. 66%) and that they had confidence in making treatment decisions (92% vs. 79%) as compared to the Standard form. Differences observed between the Easy-AD form and the Standard form were largest for those with limited literacy (e.g., easy to complete [68% vs. 27%] and Spanish-speakers, e.g., easier to complete [74% vs. 44%]). Subjects randomized to the Easy-AD form also had over one and one-half times higher comprehension scores concerning treatment choices.

Finally, most subjects (81%) preferred the Easy-AD form as compared to the Standard form. The easier form was overwhelmingly preferred by subjects with high or low literacy and those who were both English and Spanish speakers. Most participants in the study were older (mean age 61), half were women (53%), three-fourths were non-white, one-third were Spanish-speaking, and forty percent had limited literacy skills.

This study concluded that the easier advance directive form was associated with greater patient acceptability, self-efficacy with treatment decision, and comprehension, particularly for patients with literacy and language barriers. However, regardless of literacy or language, the easier form was preferred by all participants.

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