In her final weeks Mom became disoriented and insane and I had her hospitalized. They diagnosed her with a urinary tract infection and gave her antibiotics. Although her mental condition did not improve, her medical team planned to release her after a few days. When I voiced my concerns about this, her doctor dismissed her. I took my reservations to his medical director, but he did the same. No one seemed to think my views mattered.
Did I mention that I’m 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 living will. I said My mother was clear: she didn’t want a Do Not Resuscitate (DNR) order on her record. “I want every treatment I can get,” she had told me. “You don’t have to do what she wants,” this doctor said before I even finished. “I can easily give her a DNR. All you have to do is ask.” I was shocked.
I had my doubts about a doctor who, contrary to her wishes, would let a black woman die without intervention. His objectivity also seemed questionable because he and the hospital were part of an integrated healthcare system that insured them; I was concerned that some of his suggestions might be based on saving money.
It is difficult to entrust the lives of black people to a medical system that does not listen to our concerns or seems to put costs above our express wishes.
The reasons for our skepticism are not difficult to understand. My mother, who grew up in Jim Crow’s worst neighborhood, had known racism all her life. She had good reason to believe that structural racism permeated the medical system, and so did I: studies show, for example, that black patients are systematically undertreated for pain, sometimes based on long-debunked misconceptions about our insensitivity to pain.
Because of these and other differences There is deep distrust of the medical system in the black community: A 2020 poll found that 7 in 10 black Americans think the health system treats people unfairly because of their race. Tragically, the lack of trust itself often leads to poorer care. While about half of Americans with regular prescriptions do not take their medication as directed, black and Hispanic patients do so even more frequently, with medication adherence being about 7.5 percent lower than for white patients.
One of my sons is a medical student studying medical ethics. As I wrestled with my mother’s situation, he asked me, “If you did trust Grammy’s doctor, what would you do?”
I was able to answer after a new doctor showed up. From the start, this doctor listened to my concerns and responded kindly. He asked follow-up questions. After we thoroughly discussed her condition, he asked me how I would like to proceed.
“I want her to get all the treatments she needs,” I said. Then, to my surprise, I heard myself add, “But I don’t think it would be in my mother’s best interest to do CPR or be put on a ventilator.”
He said he agreed but would not have brought it up himself. It was a relief to be able to reply, “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.
For the next week, the doctors spoke to me every day. My mother could no longer make herself understood. She was unable to drink or eat, and her kidneys began to fail. The only treatment left was to treat her pain; It was time to let her go. Still, the decision was incredibly difficult. My family needed daily conversations to make sure we weren’t letting them down. Confidence in her doctor put us at ease.
Doctors are not omniscient. But we have the power to earn our patients’ trust by listening to them and caring for them with compassion.
At my own hospital, where 99 percent of our patients are Black and 96 percent have statutory or uninsured, we seek to hire physicians who are representative of the people we serve. Blacks make up the majority of our workforce because vendors who look like you and understand you go a long way in overcoming suspicion.
But my mother’s story is not an anomaly; Bias is built into the design of our separate and unequal healthcare system.
We need an honest conversation about this this institutional racism. We must face the fact that black people too often do not receive the quality of healthcare 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 are all suffering.