The acceptability to African-Americans of a structured conversation guide to improve advance care planning in the setting of cancer: A focus-group study.

Abstract

11 Background: African-Americans are less likely than whites to participate in advance care planning (ACP), which may contribute to disparities in the receipt of goal-concordant care. Literature points to multiple factors: the impact of religion, mistrust, different preferences for life-sustaining measures, family-decision making styles and poor knowledge about ACP. Early ACP conversations are associated with improved outcomes at the end of life, including goal-concordant care. A systematically-developed, serious illness conversation guide (“guide”) for oncologists, embedded in a systems-based approach to improving illness care, has demonstrated more frequent, higher-quality, and earlier ACP conversations in a predominantly white and middle class cohort of cancer patients. This study aimed to explore the acceptability and need for modification of the guide in more diverse populations. Methods: We conducted a series of focus groups with panels of clinicians and researchers, African-American church members, and seriously ill patients and their caregivers to assess barriers to ACP and preferences concerning modifications to the guide. We used template analysis to code themes at the individual, interpersonal and systems levels. Results: At the individual level, participants confirmed the importance of religion and the impact of perceived discrimination (e.g., receipt of inferior care) and superstition (e.g., talking about death may make it happen). Interpersonal-level factors influencing ACP included family, trust, and concerns about provider abandonment. Participants confirmed systems-level barriers of access and mistrust in the healthcare system and highlighted community outreach as a key part of the process. Participants reported positive responses to the tone and content of the guide and found the guide to be acceptable when it included a question that elicited coping mechanisms, including religion. Conclusions: Participants in our study found the use of a serious illness conversation guide to identify patient goals and priorities acceptable, and emphasized the importance of adding a question focused on coping and religion.