By YOLONDA Y. WILSON, PhD
Last week a nurse posted a video of herself on Twitter mocking patients with the caption “We know when y’all are faking” followed by laughing emojis. Twitter responded with the hashtag #patientsarenotfaking, created by Imani Barbarin, and a slew of testimonials of negligent medical care. While the nurse’s video was not explicitly racialized, plenty in the black community felt a particular sting: there is clear evidence that this attitude contributes to the problem of black patients receiving substandard care, and that negative behavioral traits like faking or exaggerating symptoms are more likely to be attributed to black patients. The problem is so bad that it turns out racial bias is built right into an algorithm widely used by hospitals to determine patient need.
Since we can’t rely on the system or algorithms, many health organizations and the popular media encourage patients to advocate for themselves and their loved ones by, for example, asking questions, asking for second (or more) opinions, “trusting [their] guts,” and not being afraid to speak up for themselves or their loved ones. But this ubiquitous advice to “be your own advocate” doesn’t take into account that not all “advocacy” is interpreted in the same way—especially when the advocacy comes from a black person. Sometimes a patient’s self-advocacy is dismissed as “faking;” sometimes it is regarded as anger or hostility.
Black male faces showing neutral expressions are more likely than white faces to be interpreted as angry, violent, or hostile, while black women are often perceived as ill-tempered and angry. These stereotypes can have a chilling effect on a person’s decision to advocate for themselves, or it can prompt violent reaction.
This past August, LeeAnn Bienaime delivered her firstborn child, with the assistance of her husband, in the couple’s bathtub. No, the couple had not planned a home birth. Instead, they were turned away from Naval Medical Center in Portsmouth, VA even though Bienaime was in active labor. Thankfully, she and her baby were healthy. In discussing her ordeal, Ms. Bienaime said, “In hindsight I would have stood my ground and not left.”
Consider what happened to Barbara Dawson when she stood her ground. Ms. Dawson was having trouble breathing and went to Calhoun Liberty Hospital in Blountstown, Florida. The emergency room docs determined that she was stable and discharged her. However, Ms. Dawson, knowing that something was not right with her body, refused to leave and pled to be examined further. Hospital staff responded by calling the police, who promptly arrested her for trespassing and disorderly conduct. Even after she collapsed outside of the arresting officer’s patrol vehicle, the officer assumed she was faking and can be heard on the dashcam video telling an unresponsive Dawson, “Falling down like this, laying down, that’s not going to stop you from going to jail.” Within hours, Ms. Dawson was dead from a pulmonary embolism, a blood clot in her lungs.
It’s an open secret in US hospitals that some patients and families are “good” and others are labeled “difficult.” “Good” patients and families are (or are perceived to be) compliant: they refrain from complaining or pushing back against medical advice or evaluations and abide by social norms of manners and politeness. “Difficult” patients and families challenge hospital staff.They may not easily acquiesce to hospital directives, they may ask questions, or they may have feelings.
But many patients and families who are regarded as “difficult” are merely trying to understand and advocate for themselves or their loved ones the best way they know how. Patients who speak up tend to be more satisfied with their medical encounter and gain better information about their medical conditions. Additionally, patient self-advocacy is thought to be on element in the prevention of medical mistakes. As Dr. Louise Aronson writes in defense of difficult patients in The New England Journal of Medicine, “There will always be patients and families who are considered high maintenance, challenging, or both by health care providers. Among them are a few with evident mental illness, but most are simply trying their best to understand and manage their own or their loved ones’ illness.” Dr. Aronson found herself reluctant to speak up for her father, who was a hospital patient, out of worry of being labeled “difficult” by the hospital staff. She spoke up anyway and likely saved her father’s life.
For black patients, the consequence of being “difficult” can be as deadly as any disease, injury, or illness, while the consequence of notstanding firmly for oneself can also be dangerous. It has been well-documented that black patients don’t get adequate pain relief: a 2016 study of 418 medical students and residents found that approximately 50 percent believed that black patients have “thicker skin,”and are, therefore, unable to feel pain to the extent that white patients do. Black women are three times more likely to die during and shortly after pregnancy than white women—research has connected this disparity directly to institutional racism. Even wealthy, high-profile pregnant black women, like Beyoncé Knowles-Carter and Serena Williams, had their symptoms minimized or ignored, leading to critical complications.
So what is a black patient to do? Despite medical personnel’s insistence that she was simply “confused” as a result of her pain medications, Serena Williams could afford to not back down. Not everyone can. And the consequences can linger long past the medical encounter. Black patients who find themselves with biased providers tend to have shorter medical encounters. And those who pick up on a physician’s bias tend to have greater difficulty recalling the treatment plan, further contributing to worsened health outcomes.
Medical personnel do not leave their biases at the door when they enter healthcare spaces and don their scrubs. In fact, data show that medical professionals exhibit similar levels of implicit bias as the general population, and that these biases seem to have at least some effect on treatment and care decisions.
There is some recognition that it is not black patients’ responsibility to effectively respond to bias. In September, the California State Legislature passed a bill that would require implicit bias training for healthcare workers. Ideally, such training would make healthcare workers cognizant of the racialized dynamics that can shape the medical encounter, including whether patients advocate for themselves and how their advocacy is perceived. While not a panacea and at minimum requires a long-term commitment to change, more states should take this first step. It could save lives.
Yolonda Willson, PhD, is currently a fellow at the National Humanities Center and an Encore Public Voices fellow with the OpEd Project.