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In her last weeks, Mom became disoriented and delirious, and I had her admitted to a hospital. They diagnosed her with a urinary tract infection and gave her antibiotics. Although her mental status did not improve, her team of physicians made plans to discharge her after a few days. When I expressed my concerns about this, her doctor dismissed them. I took my reservations to his medical director, but he did the same. No one seemed to think my views mattered.
Did I mention I am a Harvard graduate, and an African American doctor who runs a hospital in Los Angeles?
Despite my reservations, the doctor discharged her to a nursing facility for rehab. Two days later, she was back in the hospital, dehydrated and unresponsive. I waited for an apology from the doctors. It never came.
Meanwhile, another doctor asked me about Mom’s advance directive. I said my mother had been clear: She did not want a “do not resuscitate” (DNR) order on her chart. “I want every possible treatment,” she’d told me. “You don’t have to do what she wants,” this doctor said before I had even finished. “I can easily give her a DNR. All you have to do is ask.” I was stunned.
I found myself doubting a doctor who wanted to allow a Black woman to die without intervention, contrary to her expressed wishes. His objectivity also seemed questionable because he and the hospital were part of an integrated health system that insured her; I feared that his suggestions might have been partly based on saving money.
It is difficult to trust Black lives to a medical system that doesn’t listen to our concerns or seems to value cost above our expressed wishes.
The reasons for our skepticism aren’t hard to understand. My mother, who grew up in the worst of Jim Crow, had known racism all her life. She had good reason to believe structural racism permeates the medical system, and so do I: Studies show, for example, that Black patients are systematically undertreated for pain, sometimes based on long-debunked misbeliefs about our insensitivity to pain.
Because of this and other disparities, there is a deep distrust of the medical system in the Black community: A 2020 poll found that 7 in 10 Black Americans think the health-care system treats people unfairly based on their race. Tragically, the lack of trust itself often leads to worse care. While about half of Americans with regular prescriptions don’t take their medications as prescribed, that is even more prevalent among Black and Latinx patients, with medication adherence roughly 7.5 percent lower for them than for White patients.
Perhaps also because of this lack of trust, only 24 percent of African Americans have advanced directives stating their wishes about end-of-life care, compared with 44 percent of White patients. And far fewer Black families benefit from hospice and other end-of-life palliative-care systems that focus on mitigating pain and providing emotional support.
One of my sons is a pre-med student studying medical ethics. As I wrestled with my mother’s situation, he asked me this, “If you did trust Grammy’s doctor, what would you do?”
I was able to answer after a new doctor showed up. From the very first, this doctor listened to my concerns and responded with kindness. He asked follow-up questions. After we had thoroughly covered her condition, he asked me how I’d like to proceed.
“I want her to get all the treatment she needs,” I said. Then, to my surprise, I heard myself add, “But I don’t think it would be in my mom’s best interests to have CPR or be put on a ventilator.”
He said he agreed but wouldn’t have brought it up himself. It was a relief to be able to respond, “I brought it up because I trust you.” This doctor’s tone and attitude was a sea change — and perhaps not coincidentally, he was a person of color.
Over the next week, the doctors spoke with me every day. My mother could no longer communicate. She was no longer able to take in fluids or nutrition, and her kidneys began to fail. The only treatment left was to medicate her pain; it was time to let her go. Still, the decision was incredibly difficult. My family needed daily conversations to be sure we were not failing her. We were reassured by the trust we had in her doctor.
Doctors aren’t omniscient. But we do have the power to earn our patient’s trust, by listening and providing compassionate care.
At my own hospital, where 99 percent of our patients are people of color and 96 percent are on public health insurance or uninsured, we try to recruit doctors representative of the people we serve. The majority of our workforce is made up of people of color because providers who look like you and understand you go a long way in overcoming mistrust.
But my mother’s story isn’t an anomaly; bias is built into the design of our separate and unequal health system.
We need an honest conversation about this institutional racism. We must confront the fact that, too often, Black people do not get the quality of health care that would allow them to trust the medical system with their lives. The consequences of their experiences are cumulative. Patients, their families and our country all suffer because of it.
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