Advance directives, control, and quality of life for persons with disabilities

Personal control over end-of-life (EOL) care via advance care planning is a key component of high-quality care. Although this desire for control has been well documented in some populations, EOL care issues are not well understood within the disabilities community.

The objective for this study was to describe the relationships between individual demographic characteristics, health-related quality of life, health locus of control, and attitudes toward advance directives (ADs) in individuals who are disabilities activists.

We surveyed 55 participants attending a disability conference. Instruments included a demographic data sheet, the Advance Directive Attitude Survey (ADAS), the Multidimensional Health Locus of Control scale, and the Functional Assessment of Non-Life Threatening Conditions quality of life (QOL) scale.

Most participants were Hispanic females with some college education. About 46% had a disability. Group means revealed a high level of QOL (M=75.72, SD=19.09) and a positive attitude about ADs (M=66.49, SD=8.03). On the Opportunities for Treatment Choices subscale of the ADAS, activists without disabilities (M=14.23) were more positive about their control over EOL decisions than were the activists with disabilities (M=12.97) [t(2,52)=2.116, p<0.05].

Although participants were positive about ADs, differences in attitudes about control over opportunities for treatment choices between the nondisabled and disabled groups support previous findings that people with disabilities may have concerns regarding undertreatment for serious health conditions. Further study of EOL care issues for persons with disabilities is warranted.