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MAGAZINE / May-June 2006 / Understanding "End of Life"...

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Understanding "End of Life" Medical Decisions

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

No one knows better than caregivers the critical need for family members to make sure their loved-one’s end-of-life decisions are known and down on paper before they are needed.  Unfortunately, so often these arrangements are not documented by the patient or family members in advance of serious illness or injury.   The problem is further complicated by the reality that many elderly Americans are unable to understand the various documents and directives available to help them with this process.

The extensive national media attention surrounding the case of comatose patient Terri Schiavo has helped to bring attention to the importance of advanced medical directives and the need for family members to engage in this discussion.   However, because medical professionals have long been concerned about how low health literacy impacts an individual’s ability to complete a legal Advance Health Care Directive form, a project started well before the Schiavo case has resulted in an easier-to-understand document that is now available. 

The new form has been made possible by the efforts of two organizations as part of their concerns about adult health literacy overall. Researchers at San Francisco General Hospital and the University of California, San Francisco (SFGH-UCSF) had been designing and testing the efficacy of an advance directive form that is written at a fifth grade reading level and contains culturally appropriate graphics that explain the text.  At the same time, the Institute for Healthcare Advancement (IHA) was helping to translate this advance directive document into Spanish and promote it to its national low literacy advocacy community.

An estimated 90 million American adults read no higher than a fifth grade reading level, which is a problem since most advance directives are written above a  twelfth grade reading level.  Moreover, the advance directives available on the Internet do not combine the critical elements of fifth grade (or lower) reading level with accompanying graphics to make the documents truly easy to read and use.  So while medical professionals can advise a family and their patients have engaged in more discussion about health care wishes at the end-of-life, the literacy level of most of the available advance directives was a huge roadblock to their patients’ ability to understand their treatment choices.

For their part, IHA and SFGH-UCSF had something in common.  The IHA, a Southern California-based non-profit organization, had been making available easy-to-use self-help health books written at the third to fifth grade reading level for the past five years.  IHA’s expertise was in transforming medical self-help materials into an easy-to read and understand style and visual format that allows the reader to comprehend the document’s intent and make truly informed decisions on this subject.

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.

Upon the study’s conclusion, the IHA began communicating to providers in California to get the word out about using this easy-to-use health care information.  IHA was so impressed with the study’s results and the EASY Ad-form that it decided to take the document a step further by doing two things.  The first was to post it on the nonprofit organization’s Web site, which is networked nationally with many health literacy advocacy Web sites and organizations.  The second was to complete translation of the document into Spanish, while retaining its low literacy reading level and cultural appropriateness.

For Californians, the Easy Advance Directive form is a very simple, fill-in-the-blank document that is written in “bullet-point” style and accompanied by illustrations.  The form is divided into three parts: (1) Choose a health care agent who can make medical decisions for you if you are too sick to make them yourself; (2) Make your own health care choices now so those who care for you won’t have to guess what you want if you are too sick to tell them yourself; and (3) A section of the form for necessary signatures that make the document legally binding.

By going to the IHA Web site at and downloading the document for their own distribution, health care providers will do much to help their patients have a say in the decisions that are made about their healthcare, should they become too sick or incapable of speaking for themselves.  The document is free to download, is offered in both English and Spanish, and is easy to follow and very simple to complete.  It offers individuals the opportunity to make their health care wishes known in advance and reduces the risk of a painful family decision in the event of a tragic illness or injury.


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