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.
