Examining the Experience of African American Surrogate Decision Makers of Patients with Dementia

Introduction: Dementia cases are expected to grow for African Americans and surrogate decision makers (SDMs) will have a significant role at end-of-life (EOL). Evidence suggest African American caregivers serve as SDMs but lack sufficient knowledge of disease prognosis and interventions to plan care and make informed treatment choices at end-of life. This qualitative exploratory case study was conducted utilizing Cognitive Task Analysis (CTA) and an integrated conceptual framework to understand the end-of-life decision experience of African American SDMs for patients with advanced dementia. Methods: Using a qualitative exploratory case study with a holistic multiple case design, 8 African American SDMs were recruited and enrolled. Three 60-minute semi-structured interviews were conducted over 3 weeks. Surrogates received a Timeline Followback assessment prior to the first interview to highlight anchoring events. Interviews were audio-recorded then transcribed for coding and thematic analysis. Results: Themes germane to understanding the EOL decision experience of African American SDMs were reported. Surrogate decision making as a developmental process including role acceptance, role enactment, and emotional outcomes of deciding was described. Discussion: Findings suggest that African Americans extend the caregiver role to SDM for patients with dementia at EOL. Surrogate decision making is a developmental process. Culturally appropriate decision support to improve the quality of EOL treatment decisions and emotional adjustment of surrogates of patients with advanced dementia should be rendered early and throughout the illness trajectory.