Problematic Integration: Racial Discordance in End-of-Life Decision Making

ABSTRACT

We describe racially discordant oncology encounters involving EOL decision-making. Fifty-eight provider interviews were content analyzed using the tenets of problematic integration theory. We found EOL discussions between non-Black providers and their Black patients were often complex and anxiety-inducing. That anxiety consisted of (1) ontological uncertainty in which providers characterized the nature of Black patients as distrustful, especially in the context of clinical trials; (2) ontological and epistemological uncertainty in which provider intercultural incompetency and perceived lack of patient health literacy were normalized and intertwined with provider assumptions about patients’ religion and support systems; (3) epistemological uncertainty as ambivalence in which providers’ feelings conflicted when deciding whether to speak with family members they perceived as lacking health literacy; (4) divergence in which the provider advised palliative care while the family desired surgery or cancer-directed medical treatment; and (5) impossibility when an ontological uncertainty stance of Black distrust was seen as natural by providers and therefore impossible to change. Some communication strategies used were indirect stereotyping, negotiating, asking a series of value questions, blame-guilt framing, and avoidance. We concluded that provider perceptions of Black distrust, religion, and social support influenced their ability to communicate effectively with patients.

Acknowledgment

Thank you to Susan Eggly, Mike Stellini, Tanina Foster, Laura Hanson, Gary Winzelberg, Stacey Gabriel, Gabrielle Rocque, and Stacey Ingram for serving as local site contacts and study advocates, Shama Alam, Kristin Knutzen for their assistance with data collection, Garrett Wasp with clinical case design, and Linda Kennedy with coding.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Data availability statement

All materials and instruments developed are available by request of the authors.

Notes

1. This is an example of intraracial communication in which the provider and patient are racially Black but represent cultural differences in nationality and ethnicity that can also be problematic.

Additional information

Funding

This research was funded by the American Cancer Society, grant number [RSG-18-017-01-CPHPS].