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.
Sudore emphasizes that the simplified form, created with input from patients, patient advocates, nurses, social workers, and legal, medical, and health literacy experts, is a legally binding document in the state of California. "It has the same information and legal weight as the standard form," she says. "The main difference is that it is written in plain language that most people will understand." She calls the standard form, currently in use in many California hospitals, an "important, useful, and thoughtful document," but notes that "like many advance directives and other medical forms, it contains legalistic language that may confuse even highly educated people."
Sudore stresses that the simplified form that "is not just easy to read. The layout, margins, type face, font size, and simple illustrations that reinforce the text all add to its ease of use."
She cautions that "an easy-to-read advance directive doesn't replace good communication with a doctor, but it may be a way to even the literacy playing field and empower patients to engage in their own medical decision-making."
Sudore says the study has implications far beyond the state of California. "The Institute of Medicine, which advises the nation on health care policy, has called for a re-design of the entire health care system to accommodate patients with limited literacy skills," she observes. "I would argue that decisions about future medical care may be some of the most important decisions that a patient can make. The burden is on us, as medical professionals, to make sure patients understand their options so they can make informed decisions and engage in the advance care planning process."
She concludes, "This study suggests that providing information that is easy-to-read and non-intimidating may be an important step in the effort to transform the healthcare system to better meet the literacy needs of most patients. If other states and countries adopted simplified language for their medical forms, it would be to everyone's benefit. Information doesn't have to be hard to understand to be legal and clinically useful."
Coauthors of the study are C. Seth Landefeld, MD; Deborah E. Barnes, PhD; Karla Lindquist, MS; and Brie A. Williams, MD, of SFVAMC and UCSF, and Robert Brody, MD, and Dean Schillinger, MD, of SFGH and the UCSF Center for Vulnerable Populations, whose mission is to enhance health through improved health communication.
The study was supported by funds from the Department of Veterans Affairs, UCSF, the American Medical Association Foundation, the National Institutes of Health, and the Pfizer Fellowship in Clear Health Communication. Some of the funds were administered by the Northern California Institute for Research and Education.
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
Institute for Healthcare Advancement
Low Literacy Increases Risk of Death and Misunderstanding of Medical Consent Forms
UCSF News Release, Aug. 3, 2006
Lower Literacy Means Poor Health and Poor Health Care Access for Older People
UCSF News Release, May 26, 2006