A young mother in California's Antelope Valley bathes her children and dresses them in neat clothes, making sure they look their very best — at medical appointments. "I brush their teeth before they see the dentist. Just little things like that to protect myself from being treated unfairly," she told researchers.
A 72-year-old in Los Angeles, mindful that he is a Black man, tries to put providers at ease around him. "My actions will probably be looked at and applied to the whole race, especially if my actions are negative," he said. "And especially if they are perceived as aggressive."
Many Black Californians report adjusting their appearance or behavior — even minimizing questions — all to reduce the chances of discrimination and bias in hospitals, clinics, and doctors' offices. Of the strategies they describe taking , 32% pay special attention to how they dress; 35% modify their speech or behavior to put doctors at ease. And 41% of Black patients signal to providers that they are educated, knowledgeable, and prepared.
The ubiquity of these behaviors is captured in a survey of 3,325 people as part of an October study titled " Listening to Black Californians: How the Health Care System Undermines Their Pursuit of Good Health ," funded by the California Health Care Foundation. (KHN receives funding support from the California Health Care Foundation.) Part of its goal was to call attention to the effort Black patients must exert to get quality care from health providers.
"If you look at the frequency with which Black Californians are altering their speech and dress to go into a health care visit," said Shakari Byerly, whose research firm, Evitarus, led the study, "that's a signal that something needs to change."
One-third of Black patients report bringing a companion into the exam room to observe and advocate for them. And, the study found, more than a quarter of Black Californians avoid medical care simply because they believe they will be treated unfairly.
"The system looks at us differently, not only in doctors' offices," said Dr. Michael LeNoir, who was not part of the survey.
LeNoir, an Oakland allergist and pediatrician who founded the African American Wellness Project nearly two decades ago to combat health disparities, found the responses unsurprising, given that many Black people have learned to make such adjustments routinely. "There is general discrimination," he said, "so we all learn the role."
There is ample evidence of racial inequality in health care. An analysis by the nonprofit Urban Institute published in 2021 found that Black patients are much more likely to suffer problems related to surgical procedures than white patients in the same hospital. A study published in November by the National Bureau of Economic Research found that Black mothers and babies had worse outcomes than other groups across many health measures. And a study published in January, led by Dana-Farber Cancer Institute investigators, found that older Black and Hispanic patients with advanced cancer are less likely to receive opioid medications for pain than white patients. (Hispanic people can be of any race or combination of races.)
Gigi Crowder, executive director of the Contra Costa County chapter of the National Alliance on Mental Illness, said she frequently sees delayed mental health diagnoses for Black patients.
"I hear so many stories about how long it takes for people to get their diagnoses," Crowder said. "Many don't get their diagnoses until six or seven years after the onset of their illness."
Almost one-third of respondents in the California Health Care Foundation study — which looked only at Black Californians, not other ethnic or racial groups — reported having been treated poorly by a health care provider because of their race or ethnicity. One participant said her doctor advised her simply to exercise more and lose weight when she reported feeling short of breath. She eventually discovered she had anemia and needed two blood transfusions.
"I feel like Black voices aren't as loud. They are not taken as seriously," the woman told researchers. "In this case, I wasn't listened to, and it ended up being a very serious, actually life-threatening problem."
People KHN spoke with who weren't part of the study described similar bad experiences.
Southern California resident Shaleta Smith, 44, went to the emergency room, bleeding, a week after giving birth to her third daughter. An ER doctor wanted to discharge her, but a diligent nurse called Smith's obstetrician for a second opinion. It turned out to be a serious problem for which she needed a hysterectomy.
"I almost died," Smith said.
Years later and in an unrelated experience, Smith said, her primary care doctor insisted her persistent loss of voice and recurring fever were symptoms of laryngitis. After she pleaded for a referral, a specialist diagnosed her with an autoimmune disorder.
Smith said it's not clear to her whether bias was a factor in those interactions with doctors, but she strives to have her health concerns taken seriously. When Smith meets providers, she will slip in that she works in the medical field in administration.
Black patients also take on the additional legwork of finding doctors they think will be more responsive to them.
Ovester Armstrong Jr. lives in Tracy, in the Central Valley, but he's willing to drive an hour to the Bay Area to seek out providers who may be more accustomed to treating Black and other minority patients.
When seeking medical care, Ovester Armstrong Jr. tries to find doctors accustomed to treating Black and other minority patients. A recent study found 1 in 3 Black Californians modify their speech or behavior to put doctors at ease.
"I have had experiences with doctors who are not experienced with care of different cultures — not aware of cultural differences or even the socialization of Black folks, the fact that our menus are different," Armstrong said.
Once he gets there, he may still not find doctors who look like him. A 2021 UCLA study found that the proportion of U.S. physicians who are Black is 5.4%, an increase of only 4 percentage points over the past 120 years.
While health advocates and experts acknowledge that Black patients should not have to take on the burden of minimizing poor health care, helping them be proactive is part of their strategy for improving Black health.
LeNoir's African American Wellness Project arms patients with information so they can ask their doctors informed questions. And the California Black Women's Health Project is hiring health "ambassadors" to help Black patients navigate the system, said Raena Granberry, senior manager of maternal and reproductive health for the organization.
Southern California resident Joyce Clarke, who is in her 70s, takes along written questions when she sees a doctor to make sure her concerns are taken seriously. "Health professionals are people first, so they come with their own biases, whether intentional or unintentional, and it keeps a Black person's guard up," Clarke said.
While the study shed light on how Black patients interact with medical professionals, Katherine Haynes, a senior program officer with the California Health Care Foundation, said further research could track whether patient experiences improve.
"The people who are providing care — the clinicians — they need timely feedback on who's experiencing what," she said.
This story was produced by KHN, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.
Images: SHELBY KNOWLES FOR KHN
KFF Health News © 2023