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Understanding "End of Life" Medical Decisions

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

(Page 1 of 3)

No one knows better than caregivers the critical need for family members to make sure their loved-oneís 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 individualís 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 patientsí 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. IHAís 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 documentís intent and make truly informed decisions on this subject.

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