"They Did Not Know How to Talk to Us and It Seems That They Didn't Care:" Narratives from Bereaved Family Members of Black Veterans.

Abstract

Racial disparities in the quality of health care services, including end of life (EOL) care, are well-documented. While several explanations for these inequities have been proposed, few studies have examined the underlying mechanisms. This paper presents the results of the qualitative phase of a concurrent mixed-methods study (QUANT + QUAL) that sought to identify explanations for observed racial differences in quality of EOL care ratings using the Department of Veterans Affairs Bereaved Family Survey (BFS). The objective of the qualitative phase of the study was to understand the specific experiences that contributed to an unfavorable overall EOL quality rating on the BFS among family members of Black Veterans. We used inductive thematic analysis to code BFS open-ended items associated with 165 Black Veterans whose family member rated the overall quality of care received by the Veteran in the last month of life as "poor" or "fair." Four major themes emerged from the BFS narratives, including (1) Positive Aspects of Care, (2) Unmet Care Needs, (3) Lack of Empathy, Dignity, and Respect, and (4) Poor Communication. Additionally, some family members offered recommendations for care improvements. Our discussion includes integrated results from both our qualitative and previously reported quantitative findings that may serve as a foundation for future evidence-based interventions to improve the equitable delivery of high-quality EOL care.