Exploring Attitudes toward Advance Care Directives in Two Diverse Settings

Abstract

Advance care directives (ACD) are not used equally by different ethnic groups in the United States. Theories regarding this difference include lack of access to health care, mistrust of the health care system, absence of surrogate decision makers, and universal lack of knowledge on this topic. Few studies have investigated attitudes toward advance care planning for future end-of-life decision-making in the Latino and Cambodian communities. Six focus groups were conducted, including a total of 20 Latino and 19 Cambodian patients of two community health centers. Focus groups were audiotaped, transcribed, and qualitatively analyzed to identify major themes regarding attitudes toward advance directives and engaging in discussion about advance care planning. Most patients did not have a health care proxy nor had discussed this topic with their doctor. Two broad themes were identified: integration of belief systems (including religion, suffering/destiny, and importance of quality of life) as well as process/preferences regarding decision-making (including family roles, provider roles, confusion/uncertainty regarding ACD, and openness to learning about ACD). In focus groups discussing end-of-life decision making among Latino and Cambodian patients, two main themes emerged: integration of belief systems and process/preferences regarding end-of-life care. In particular, efforts to improve completion of advance care directives in diverse populations should consider patients' emphasis on quality of life and destiny in end-of-life planning as well as the role of family consensus in decision-making.