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
www.iha4health.org 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.
Caregivers in other
states who are interested in generating this document in a format
and language that is specific to their state’s laws are welcome to
do so. However, if the form is changed in order to meet individual
state requirements, please inform IHA and the researchers at
SFGH-UCSF by
sending an email to gmayer@iha4health.org.
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