By Steve Tokar, 415/221-4810 x5202 A redesigned, simplified advance directive written at a fifth-grade reading level, with graphics that reinforce the text, was overwhelmingly preferred and completed at a higher rate by patients at all literacy levels compared with a commonly available standard form written at a twelfth-grade level. The finding is in a study by researchers at the San Francisco VA Medical Center and the University of California, San Francisco. Written advance directives are used by patients to document end-of-life treatment wishes, designate surrogate decision-makers, and promote discussion regarding treatment wishes. However, note the study authors, they are often not completed by patients. "Most study participants, regardless of their literacy level or whether they spoke English or Spanish, felt that the simplified form was better in all respects," concludes lead author Rebecca Sudore, MD, a staff physician at SFVAMC and creator of the redesigned form. "In addition, a significant percentage of participants chose to complete the simplified advance directive for their own personal use." Sudore says the completion rate is significant because "historically, many efforts to encourage patients to complete advance directives have shown limited, or at best mixed, results." The study is available in the online "In Press" section of the journal Patient Education and Counseling. Sudore, who is also an assistant professor of medicine at UCSF, says that she was inspired to create a simplified advance directive when she served on the ethics committee at San Francisco General Hospital Medical Center. "We noticed that many of our poor and disenfranchised patients were not completing advance directives, and many were ending up in our intensive care unit without friends or family to speak for them," she recalls. "Since the average reading level in the US is eighth grade or below, and most medical and legal forms are written at a twelfth grade level or beyond, this seemed like an appropriate first step to help remedy this problem." Both the standard and simplified forms include preferences for medical treatment, organ donation, and autopsy, designation of a durable power of attorney for healthcare, and an explanation of the purpose of advance directives. However, says Sudore, the simplified form features a more organized layout and text-enhancing graphics. It also offers broader choices for medical treatment than the standard form, plus a "values history" that asks patients to consider what makes their lives worth living as a method for deciding what level of end-of-life care they would like to receive. The simplified form can be downloaded free in English, Spanish, Chinese, and Vietnamese from the website of the Institute for Health Care Advancement. To test the simplified form against the standard form, Sudore and her fellow researchers recruited 205 English and Spanish speaking patients aged 50 years and older from the General Medicine Clinic at SFGH. Forty percent had limited literacy (eighth grade reading level or lower), one third had less than a high school education, 30 percent were Spanish-speaking only, and 70 percent rated their health as only fair to poor. Participants were randomly assigned to read and attempt to complete one of the two forms in their native language. They were then asked to rate the assigned form on features such as ease of use and understanding, usefulness in treatment discussions and decisions, and general value in care planning. Participants assigned to the simplified form rated it higher in all categories and were able to complete a greater portion of the form than those assigned to the standard form. Ratings of the simplified form were even higher among participants with limited literacy, report the authors. Members of each group were then asked to briefly read and evaluate the other form. When asked which form they preferred for their own health care planning, 73 percent of all participants said they preferred the simplified form, regardless of their literacy level or language. Six months later, 19 percent of the group assigned to the simplified form had completed an advance directive for their own personal use versus 8 percent of the standard-form group. Among the 22 study participants who completed an advance directive, the simplified version was the overwhelming favorite: 19 completed the simplified form, 2 completed both, and only 1 completed the standard form.
An Advance Directive Redesigned to Meet the Literacy Level of Most Adults: A Randomized Trial Rebecca L. Sudore, C. Seth Landefeld, Deborah E. Barnes, Karla Lindquist, Brie A. Williams, Robert Brody and Dean Schillinger Patient Education and Counseling (2007), available online October 18, 2007 Summary | Full Text | Full Text (PDF)