End-of-Life Decision-Making among African Americans with Advanced Cancer

Indiana University Indianapolis, Indianapolis IN

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Abstract

Project Summary/Abstract The goal of the proposed research training plan is to enable the applicant to develop the knowledge and skills necessary to serve as the foundation of a program of research focused on improving end-of-life (EOL) decision-making and communication among African Americans (AAs). AAs are disproportionately affected by high morbidity and mortality rates from cancer. Compared to Caucasians, death rates for all cancers combined are 32% and 16% higher in AA men and women, respectively [1]. Thus, many AAs with advanced cancer could benefit from comfort-focused care (CFC) at the end of life (EOL), such as hospice or palliative care [2]. AAs often choose life-prolonging treatments (LPT) despite a small chance of cure [3-7]. CFC has repeatedly been shown to have beneficial patient and family outcomes [8-11]. However, although AAs represent 12.6% [12]of the population in the United States, they represented only 8.7% of all 2009 hospice enrollees [2]. Evidence suggests the factors that contribute to the AA EOL decision-making process are multifaceted and include a blend of patient and family characteristics and several patient-family-provider interaction factors. Of the factors contributing to such decision-making, communication is a critical component [13-15]. Enhancing EOL discussions and improving understanding of EOL decision-making among patients with advanced cancer and their families are important to foster patient and family-centered care at EOL [16]. To improve AA decision-making at EOL, it is essential to understand patient and family perceptions related to the decision to continue or discontinue LPTs and to ascertain the underlying elements that contribute to differences in decision-making among AA family members. A conceptual framework informed by the literature and the Ottawa Decision Support Framework (ODSF) will guide this study of care decision-making related to AAs with advanced cancer from the perspectives of their bereaved family members. The purpose of this mixed methods study is to examine AA family members' perceptions of the factors that influenced EOL decision-making for their family member who died from advanced cancer using Ottawa Decision Support (ODS) instruments and after-death semi-structured interviews. Forty-eight bereaved family members will participate in the telephone interview using quantitative structured data collection tools and 15 will participate in the qualitative semi- structured interviews.