The Federal Patient Self-Determination Act Final Regulations (1995) passed by Congress mandating that healthcare facilities receiving Medicaid and Medicare must present to patients information necessary for medical decision making. As a part of this act, Advance Directives (ADs) give patients autonomy in making decisions regarding end-of-life preferences prior to becoming incapacitated or otherwise unable to communicate. Documented and publicized legal cases of incapacitated young adult patients ages 21-40 without expressed medical treatment choices and end-of-life preferences have brought the concern to the forefront for young adult African American families.
The primary aim of this study was to explore the perceptions, knowledge, and attitudes towards and the utilization of ADs in members of young adult African American families. A secondary aim of the study was to explore the relationship between the demographic variables of gender, educational level, marital status, and occupation of young adult African American family members and their knowledge, attitudes, and utilization of ADs. This mixed method, descriptive design study was guided by Imogene King’s general systems framework using the concepts of self, perceptions, transactions, and attitudes. The researcher recruited young adult African American family members for the convenience sample from which data was collected using the Advance Directives: Knowledge, Attitudes, Utilization Questionnaire (Waters, 2000), a demographic data sheet, and a focus group session.
The data revealed perceptions, knowledge, and attitudes of ADs which the researcher categorized into seven themes: (a) lack of knowledge, (b) fear of death, (c) trust in God, (d) family as decision maker, (e) decrease in family stress, (f) family as decision-maker, and (g) respecting choices. The data did not support evidence of significant relationships between the variables gender, marital status, education, and occupation and the knowledge, attitudes, and utilization of ADs with the exception of the relationship between gender and the feeling of being treated differently for having a living will in place. Results suggest a need for members of young adult African American families to obtain knowledge of ADs prior to suffering any unforeseen illness or incapacitation resulting in their inability to make potentially life-altering medical decisions for themselves.