Lived Experiences of Racism and Patient-Clinician Communication Among Black Adults With Serious Illnesses

Racial inequities in high-intensity care negatively affect the quality of care received by Black patients with chronic and complex medical conditions, several studies have shown. An NIMHD study on the lived experiences of Black patients hospitalized with serious illnesses at the end of life revealed frequent instances of perceived racial discrimination and microaggressions from health care workers that increased medical mistrust and poor patient-clinician communication in medical decision-making.

In this qualitative study, the researchers conducted one-on-one interviews with 25 Black patients (20 males and 5 females; average age of 62 years) who were hospitalized with serious illnesses—defined as a diagnosis associated with a median life expectancy of 2 years or less—at an urban teaching medical center in Washington State between January 2021 and February 2023. The participants completed a survey indicating experiences of racism from health care workers. Then, during interviews, the participants shared their experiences of racism, how those experiences affected the way that they communicated with clinicians, and how racism affected medical decision-making as they neared the end of life.

Participants reported high levels of race-based medical mistrust and frequent discrimination and microaggressions from health care workers. In describing their experiences with racism, participants cited health care workers silencing or dismissing their experiences and self-knowledge of their illnesses and bodies as the most common manifestation of racism.

One participant said, “I’ve gone to the hospital and had people ignore what I’ve said because they thought I was uneducated. Some people assume that Black people are not capable of understanding what you’re saying or answering a question properly.”

Another participant noted, “If I tell a doctor, ‘No, it’s not that, it’s this,’ they think that you’re playing doctor. They don’t like you playing doctor.” And another participant stated, “They take it as, ‘How dare you question me?’”

These experiences, the participants reported, made them feel isolated and devalued; as one participant said, “We start to feel inferior, like I don’t want to ask [a question], because they’ll just laugh.” Another participant said, “There’s a lot of discrimination, and it doesn’t matter what I say. ‘Just do as I say.’ That’s the feeling that I get.”

Participants reported that discrimination from health care workers was worse if patients had low socioeconomic status, were less educated, were medically underinsured, or unhoused. Health care workers’ discrimination and their refusal to recognize patients’ self-knowledge and beliefs negatively affected patient-clinician communication and increased patients’ mistrust of the care provided to them or the decisions made regarding their care.

The researchers concluded that the experiences of racism among Black patients hospitalized with serious illnesses resulted in poor patient-clinician communication and mistrust of medical care at the end of life. These findings provide opportunities for workforce diversity and other culturally informed, race-based interventions to mitigate health care discrimination and to support Black patients with serious illnesses receiving end-of-life care.

Citation
Brown, C. E., Marshall, A. R., Snyder, C. R., Cueva, K. L., Pytel, C. C., Jackson, S. Y., Golden, S. H., Campelia, G. D., Horne, D. J., Doll, K. M., Curtis, J. R., & Young, B. A. (2023). Perspectives about racism and patient-clinician communication among Black adults with serious illness. JAMA Network Open, 6(7), e2321746. https://doi.org/10.1001%2Fjamanetworkopen.2023.21746

Page published Nov. 27, 2023