End-of-life decision-making among African Americans with serious illness

Abstract

African Americans' tendency to choose life-prolonging treatments (LPT) over comfort focused care (CFC) at end-of-life is well documented but poorly understood. There is minimal knowledge about African American (AA) perceptions of decisions to continue or discontinue LPT. The purpose of this study was to examine AA family members' perceptions of factors that influenced end-of-life care decision-making for a relative who recently died from serious illness. A conceptual framework informed by the literature and the Ottawa Decision Support Framework was developed to guide this study. A retrospective, mixed methods design combined quantitative and qualitative descriptive approaches. Forty-nine bereaved AA family members of AA decedents with serious illness who died between 2 to 6 months prior to enrollment participated in a one-time telephone interview. Outcomes examined include end-of-life treatment decision, decision regret, and decisional conflict. Quantitative data were analyzed using descriptive statistics, independent-sample t-tests, Mann-Whitney U tests, chi-square tests, Spearman and Pearson correlations, and linear and logistic regressions. Qualitative data were analyzed using content analysis and qualitative descriptive methods. Family members' decisional conflict scores were negatively correlated with their quality of general communication (rs = -.503, p = .000) and end-of-life communication scores (rs = -.414, p = .003). There was a significant difference in decisional regret scores between family members of decedents who received CFC versus those who received LPT (p = .030). Family members' quality of general communication (p = .030) and end-of-life communication (p = .014) were significant predictors of family members' decisional conflict scores. Qualitative themes related to AA family members' experiences in end-of-life decision-making included understanding (e.g., feeling prepared or unprepared for death), relationships with healthcare providers (e.g., being shown care, distrust) and the quality of communication (e.g., being informed, openness, and inadequate information). Additional qualitative themes were related to perceptions of the decision to continue LPT (e.g., a lack of understanding, believe will benefit) or discontinue LPT (e.g., patient preferences, desire to prevent suffering). In conclusion, this study generated new knowledge of the factors that influenced AA bereaved family members' end-of-life decision-making for decedents with serious illnesses. Directions for future research were identified.