The primary purpose of this study is to identify why only 10 to 25 percent of Americans have an advance directive despite the 1990 Patient Self Determination Act which mandates that health care facilities reimbursed by Medicare and Medicaid provide patients with information on advance directives.
This paper presents the results of the qualitative phase of the research which included (1) analysis of literature distributed by medical facilities (2) qualitative interviews (N=25) to identify the topics to include in a quantitative survey, (3) pre-test of an advance directive literacy scale and follow up interview among respondents aged 55 to 75+.
Results of the qualitative interviews and pre-test suggest that among the age group studied there is a general grasp of the purposes of advance directives. There is less understanding of the terminology included in the forms and little understanding of the process of arranging health care proxies. In depth probing among those who said they had a health care proxy revealed confusion as to whether they signed a health care proxy or a consent form as well as the difference between a health care proxy and a living will.
Responses suggest that not having an advance directive is related to inertia, denial, and expectation that others will take care of "things" and that having a health care proxy is related to having an experience around end-of-life decisions caring for others.
These and other hypotheses will be tested in a survey funded by the Pfizer Foundation.
Keywords: Health Literacy,
Presenting author's disclosure statement:
Organization/institution whose products or services will be discussed: None
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.