Low Trust, Bias Taint Shared Decision-Making for Black Patients

Implicit bias and racism in patient-provider communication are hampering shared decision-making, a new qualitative study in JAMA Network Open reported.

The study, which detailed responses from qualitative one-on-one interviews with seriously ill Black patients, showed that epistemic racism—or the phenomenon of silencing patients’ knowledge of their own illness and bodies—sowed distrust in medical providers. In turn, patient-provider communication and clinical decision-making suffered, the researchers from UW Health said.

These findings come as industry leaders look closely at the patient experience of care for populations of color and the way implicit bias can taint communication. This particular study draws a throughline between perceived racism and shared clinical decision-making.

The researchers looked particularly at patients with serious illness because of the critical role a good patient-provider relationship and communication play in end-of-life treatment and advanced care planning.

“High-quality, serious illness communication supports patients and caregivers by clarifying values and goals and is essential for effective shared decision-making,” the researchers explained.

But after completing one-on-one qualitative interviews with 25 Black patients with serious illness, the researchers said that supportive communication and shared decision-making don’t always happen.

That’s because of what the researchers described as epistemic racism. Study participants described situations in which their healthcare providers silenced or diminished their own knowledge of their illness, their bodily needs, and their personal choices.

“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,” one participant told the researchers.

Others described experiences in which patient-provider interactions were colored by implicit biases.

“[This nurse’s] prejudice was her view of Black men, that I’m intimidating, loud, and aggressive, and she should be able to speak to me in any manner she wishes,” a separate respondent said.

Participants said these microaggressions were worse when the respondent had an intersecting SDOH, for example, if they were experiencing homelessness and were Black.

It was not just personal experiences with racism and implicit bias that impacted respondents. Some described upsetting scenarios that affected their family and friends and which altered their view of the healthcare industry.

All said, these experiences yielded serious trust problems for patients and providers.

“I always looked at [the medical field] as a racist, white supremacist–controlled institution,” one participant said.

“If you don’t feel like you’re getting all the information, it’s hard for you to have faith and trust the doctors you’re working with. It makes you skeptical about the care you’re getting,” another explained.

Patients said they felt discouraged from asking questions and stymied by what they said was often a paternalistic patient-provider interaction. And while some tried to stand up for themselves, others said they were concerned they’d face further discrimination if they spoke up.

Ultimately, this impacted the clinical quality of patient-provider communication and shared decision-making. Some participants reported that they chose not to engage in deep patient-provider communication, while others described jumping through the hoops of code-switching. In some cases, shared decision-making hinged on the patient being able to confirm why they’ve been recommended a certain treatment.

The researchers posited that patient engagement in shared decision-making may be beleaguered by patients’ multiple consciousnesses. Patients are often assessing their own wants and needs while also focusing on how their communication may be interpreted by their providers.

“Supporting patients during conversations around medical decision-making with trusted clinicians, especially those who are race concordant, may help patients make decisions based on personal values and preferences unencumbered by concerns of bias,” the researchers explained in the study’s discussion section. “Indeed, improving workforce diversity is crucial to addressing these disparities given that race concordance for Black patients has been associated with improved health and health care outcomes, including mortality.”

Supporting implicit bias training among healthcare workers will also be critical, the researchers said. In doing so, providers may be able to engage in more empathic communication with patients that focuses less on goals of care and more on building trusting relationships.