A team of researchers, investigating how clinicians in the U.S. healthcare system interact with Black American patients with serious illness, has concluded that suboptimal communication is exacerbating health inequity, as widespread patterns of disrespect in clinicians’ interactions with patients who are Black, poor, and/or unhoused, is impacting patient outcomes. The solution? Clinicians need to engage in consciously intersectional efforts to communicate with Black patients in ways that maintain the patients’ dignity and respect their lived experiences, and need to educate themselves on how to interact with patients who are not middle-class and educated.
After conducting in-depth, one-on-one interviews with a number of Black patients being treated for serious illness inside the U.S. healthcare system, a team of researchers, writing in JAMA Open Network, has concluded that systemic basis pervades communications with patients who present as Black, not educated, and poor; and those researchers conclude that clinicians providing care to Black patients of lower socioeconomic status need to reconfigure how they interact with those patients in order to improve their outcomes and make them feel truly cared for in the delivery system.
In their article “Perspectives About Racism and Patient-Clinician Communication Among Black Adults With Serious Illness,” published online on July 5, Crystal E. Brown, M.D., MA; Arisa R. Marshall, BS; Cyndy R. Snyder, Ph.D.; Kristine L. Cueva, M.D.; Christina C. Pytel, MPA; Sandra Y. Jackson, MSE; Sherita H. Golden, M.D., MHS; Georgina D. Campelia, Ph.D.; David J. Horne, M.D., M.P.H.; Kemi M. Doll, M.D., MSCR; J. Randall Curtis, M.D., M.P.H.; and Bessie A. Young, M.D., state that “This study found that Black patients’ experiences with racism, specifically epistemic injustice, were associated with their perspectives on medical care and decision-making during serious illness and end of life. These findings suggest that race-conscious, intersectional approaches may be needed to improve patient-clinician communication and support Black patients with serious illness to alleviate the distress and trauma of racism as these patients near the end of life.”
Further, the article’s authors note, “Racial inequities during serious illness and end of life (EOL) are well documented. In the last six months of life, Black patients were more likely to be hospitalized and admitted to the intensive care unit, receive mechanical ventilation and cardiopulmonary resuscitation (CPR), and die in the hospital, studies have found. This was associated with disproportionately high health care costs, a high symptom burden, and poor quality of life at EOL among Black patients. Spirituality and religion, health literacy, and mistrust have been used to explain why this higher-intensity care exists,” they write. “For example, religious beliefs are cited as a reason Black patients may not desire prognostic information despite evidence suggesting otherwise. Additionally, low engagement in advance care planning (ACP) and hospice enrollment is often attributed to low levels of health literacy and related knowledge deficits.”
Importantly, the researchers underscore the fact that “Traditional approaches to develop interventions addressing health disparities often ask Black patients to conform to White normativity and discount lived experiences and perspectives that are often marginalized by health care institutions. However, traditional, deficit-based approaches focused on changing patient personal attributes burden patients and their caregivers to correct health inequities rather than improving the trustworthiness of health care workers (HCWs) and institutions. High-quality, serious illness communication supports patients and caregivers by clarifying values and goals and is essential for effective shared decision-making. However, Black patients experience HCW bias, lack of physician diversity, and poor-quality patient-clinician communication. Research on Black patient experiences during serious illness and EOL often lacks critical, race-conscious approaches to account for lived experiences within racialized medical settings.”
What’s more, the researchers find that “This contributes to poor understanding of how these experiences may be associated with communication with HCWs and medical decision-making during serious illness. Majoritarian framing of health disparities is associated with pathologizing of Black patients and further widening of the equitable care gap. In contrast, critical, race-conscious approaches challenge disciplinary norms and actively work against pervasive practices and thinking that uphold white normativity by prioritizing narratives that counter mainstream medical viewpoints. A race-conscious approach centers the role of racism and racialized experiences of Black patients and the association of these experiences with Black patient beliefs and behaviors within clinical settings. This contrasts with typical, race-agnostic approaches that overlook the unique experiences shaped by historical and current structural and interpersonal racism and that often compare Black patient experiences with those of White patients without exploring the diversity of experiences and perceptions among Black patients themselves.”
The article’s authors note that “We conducted semi-structured interviews with Black patients with serious illness to explore how racism may be associated with patient-clinician communication and decision-making. Public Health Critical Race Praxis (PHCRP), a pragmatic form of Critical Race Theory, provided framework and processes through the use of 10 principles within a four-stage research process to acknowledge how Black patients who were marginalized and othered navigated medical settings.” In doing so, they write that they uncovered patterns of bias.
To begin with, they write, “We recruited Black patients with serious illness hospitalized at an urban academic county hospital in Washington State. Potential participants were aged 18 years or older, had no cognitive dysfunction, and had a serious illness defined as a diagnosis associated with a median life expectancy of two years or less. Patients were screened through the electronic health record (EHR) and approached on hospital day 2 or 3 for enrollment in an ongoing prospective study examining racism and communication. Wealth was measured by the sum of ownership of 5 assets (checking account, savings account, retirement funds, vehicle, and home ownership). The EHR was used to identify potential participants, but only patients who self-identified as Black were interviewed. After consenting, participants completed a survey containing the Discrimination in Medical Setting (DMS) scale, Group-Based Medical Mistrust scales, and Microaggressions in Health Care scales.” And, the researchers note, patients were interviewed by physicians of color: “C.E.B., a Black and Korean pulmonary and critical care physician trained in mixed-methods research, and A.R.M., a multiracial, Asian and Pacific Islander research coordinator with experience in health care ethics and qualitative research, conducted all interviews. Lasting 30 to 70 minutes, interviews were conducted past the point of thematic saturation to ensure that breadth and depth of perspectives were captured.”
What the researchers found was that “Participants described health care as an institution with substantial racism: ‘I always looked at [the medical field] as a racist, white supremacist–controlled institution,’ a participant said (participant 8). Participants described personal experiences with discrimination, bias, and stereotyping. A participant recalled, ‘This [doctor] sent me home to die with congestive heart failure looking at her dead in the face’ (participant 7). Another participant shared, ‘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’ (participant 8). Participants described discriminatory treatment based on multiple intersecting axes of oppression, particularly perceived ability to pay and insurance status. A participant said, ‘If you have lots of wealth, you get extremely good treatment. If you have less wealth, you get poorer treatment. If you aren’t of the right group, you get lousy treatment’ (participant 5). Participants who were unhoused described difficult interactions with HCWs. A participant shared, ‘I’m homeless. So that limits me from really having a voice as it is. It doesn’t matter what I say’ (participant 23). Another observed, ‘It’s hard for people to see me. Don’t let them say that you are homeless. That’s biased’ (participant 15).”
Most pointedly, the interviewers reported the following: “Participants reported awareness of how HCWs viewed them, especially if they were poor, Black, or less educated. ‘We start to feel inferior, like I don’t want to ask [a question], because they’ll just laugh,’ a participant said (participant 20). Care from HCWs with bias who devalued patients exacerbated feelings of vulnerability, especially when they saw how others, especially White patients, were treated. ‘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,’ a participant said (participant 22). Another participant shared, ‘It’s a terrible feeling. I can’t stand up and walk away. And if I sit here and take this [expletive], my situation is going to get even worse’ (participant 10). Participants worried about mistreatment or neglect in retaliation for voicing concerns about racism in their care. ‘I’m not going to say nothing. The last thing I’m going to do is start [expletive] with someone who’s going to decide whether I hurt or sleep well,’ a participant said (participant 18).”
The researchers’ conclusion? “In this qualitative study, Black patients with serious illness reported experiencing racism as being silenced and excluded by HCWs. These experiences were exacerbated by other marginalized, intersecting identities. These findings suggest that critical, race-conscious approaches that move away from placing patients in deficit-based frameworks that uphold white normativity may be needed to help manage the distress of racism and improve communication and decision-making for Black patients experiencing multiple axes of oppression during serious illness.”
