HEALTH ADVOCACY PROGRAM
SARAH LAWRENCE COLLEGE
Bronxville, NY 10708
Results of Literacy Study Reinforce Need for the
Family Health Care Decisions Act
The Problem:
The vast majority of American adults believe it is important to make their
own decisions about health care, and wish to control those decisions even
if they lose mental capacity at the end of life. Nevertheless, the
percent of those having a health care proxy, living will or other legal
document that indicates their wishes in case of such incapacity is
estimated at between two and 30 percent. Many people believe they do not
need such a document, assuming that their family or other loved ones will
know their wishes and be able to make these decisions for them. Others
may put off completing the form because they don’t want to think about
their own death.
These ideas about health care proxies may have serious and unforeseen
consequences for New York residents who are unaware that New York is one
of only two states that do not allow family members who have not been
named as agents in a health care proxy to make health care decisions for
an incapacitated relative. In New York State, only physicians are legally
authorized to make decisions about providing or withholding care in this
situation.
The Research:
The goal of a recent study conducted by the Sarah Lawrence College
Graduate Health Advocacy Program [1] was to determine whether advance
directive literacy – the ability to read and understand patient rights
about medical decisions – has an impact on completing a health care proxy.
The study was conducted among 210 elder adults living independently in
urban, suburban and rural New York State counties. In addition to a
25-minute interview about advance directives and end-of-life treatment
decisions, respondents completed three types of tests to measure health
literacy: basic health literacy, document literacy and advance directive
literacy. Almost all (87%) scored at the 9th grade level on
basic health literacy indicating they are capable of reading health care
material.
The Implications:
The findings summarized on the next page suggest that New York’s law
regarding end-of-life treatment decisions is inconsistent with the beliefs
and preferences of most older residents. People who think their family
will have the right to make treatment decisions for them see no need to
sign a health care proxy or other legal document for this purpose.
Furthermore, even educated residents with high scores on a basic health
literacy test have difficulty understanding the complexity of the New York
law.
Major Findings:
- Most respondents did not have a health care proxy or other advance
directive.
- Only one-third (34%) of respondents have a health care proxy
designating an agent to make health care decisions for them. Thus two out
of three seniors have not completed advance directives despite the fact
that all of the research sites had conducted programs to educate residents
about the importance of having a health care proxy.
- The most important predictors of having an advance directive are
attitudes toward end-of-life decision-making, living alone and advance
directive literacy
- People trust their families to make health care decisions for them.
- When asked whom they trust the most to make medical decisions for
them, the vast majority (79%) mentioned a spouse or other family member.
- Those without a health care proxy were more than twice as likely to
mention their spouse.
- Only 17 percent mentioned their physician.
- Many were confused about advance directive documents and New York
State instructions.
- More than half (55%) of respondents have difficulty grasping the facts
about NYS law pertaining to end-of-life treatment decisions.
- More than half indicated they believed family decision-making was
legal in NYS without a designated health care proxy even after reading a
statement that the law states otherwise. Another twenty percent were not
sure.
- More than a third do not understand that the family cannot make
decisions if a non-family member is the designated decision-maker.
- Even after reading a definition of the health care proxy, only 28
percent indicated a clear understanding of this document.
- A standardized assessment of document literacy showed that only six
(6) percent of respondents understood the NYS instructions for completing
a proxy form.
[1] This research was funded by a special grant from Pfizer Inc
For additional information contact:
Marsha Hurst, Director, Health Advocacy Program, 914-395-2371
mhurst@slc.edu
Lois Steinberg, Project Co-Director
LStein5325@aol.com