Race and culture still matter 50 years after Tuskegee syphilis study

By Barbara Coombs Lee and Paul Smith

Fifty years ago, an Associated Press reporter uncovered the infamous "Tuskegee Study of Untreated Syphilis in the Negro Male." Tragically, since the physicians deliberately withheld treatment, 28 of the 600 study patients died, 100 died from syphilis complications, 40 of their wives were infected and 19 children were born with congenital syphilis. This disgraceful 40-year study from 1932-1972 left communities of color with a lasting distrust of the institution of medicine, most especially medicine in collaboration with the government.

Today, we see a damaging form of distrust play out in significantly lower COVID-19 vaccination rates among African Americans and persistently high rates of subsequent infection and mortality. Distrust of the medical profession can also harm people at the end of life if it causes them to press for futile treatments that inflict unnecessary suffering.

Every part of American life includes discrimination, injury and injustice arising from the racism woven through our social fabric. Health care is no exception. But the stain of unequal opportunities to prevent disease and receive appropriate medical care seems especially repugnant and shameful, occurring as it does in an industry that exists to care for others and save lives.

It seems that negative stereotypes of diverse communities are so ingrained in American society that it is almost impossible not to internalize negative attitudes and harbor them in the subconscious mind.

In 2017, a summary report of 42 separate research articles presented incontrovertible evidence that most health care providers do hold implicit biases. Specifically, most have automatic positive attitudes toward white people and negative attitudes toward nonwhite people. Most of the studies used the Implicit Association Test, or IAT. The IAT website reports two-thirds (68 percent) of the 3 million-plus test takers had a "strong," "moderate" or "slight preference" for white people.

Numerous studies, covering many sources of pain across various medical settings, reveal that Black patients are 22percent less likely than white people to receive medication for their pain.

Black people may be understandably suspicious that doctors don't offer them the most expensive tests and treatments and the newest technological advances as often as they do their white patients.

Paradoxically, at the end of life, racial and ethnic minorities receive more intensive treatments that impose great suffering but deliver little value ― and at great cost. In 2021, a summary report of research on sociodemographic disparities in health care found that Black people are less likely to receive the benefits of hospice and palliative care, including the end-of-life care option of medical aid in dying for terminally ill adults. Medical aid in dying is authorized for more than 1 in 5 U.S. residents: It is allowed in California, Colorado, Hawaii, Maine, Montana, New Jersey, New Mexico, Oregon, Vermont, Washington and the District of Columbia.

Black people's mistrust of physicians understandably creates a suspicion that doctors have given up prematurely before all options for cure are exhausted.

In June 2021, investigators looking at data from more than 21,000 patients who died in a hospital from metastatic cancer found people from racial and ethnic minority groups were more likely to be admitted from an emergency department and to receive invasive mechanical ventilation and incurred higher costs for their end-of-life care compared with white patients.

Dying is not the worst thing that can happen to you. The worst thing, the greatest defeat, is when cancer or any other disease robs us, in the process of dying, of everything it means to be human. This includes all experiences of the mind and body: thinking, loving, praying, and filling our hearts and the hearts of those around us with gratitude for the miracles of life. For many, the final victory is escape from "mere existence" when all the precious gifts of human life are gone.

Many people in historically underserved communities don't have a primary care physician. They obtain care through emergency departments or urgent care clinics. This harsh reality tends to funnel patients into high-intensity treatment settings, irrespective of whether invasive treatments are appropriate to the stage of illness or personal preference.

What can be done to improve this situation? Among policies designed to increase the supply of family practitioners in underserved communities are incentives such as student loan forgiveness. Similarly, regulators could broaden practice guidelines and enhance deployment of nurse practitioners and physician assistants in underserved areas.

Expanding telemedicine could make primary care more widely available. Removing barriers to increase the number of people of color who pursue careers in health care is also important. Postgraduate education for medical practitioners increasingly includes training to compensate for inherent bias and build cultural sensitivity.

Knowledge is power, and self-knowledge is the key to empowering each of us to be better, first by acknowledging the corrosive racist bias embedded in every corner of American law, policy, institutions, organizations and businesses. And second, by admitting to being part of the problem, until we are up to the task of being part of the solution.

Barbara Coombs Lee is president emerita and senior adviser for the patient advocacy group Compassion & Choices. She also was a nurse and physician assistant for 25 years. The Rev. Paul Smith is a civil rights veteran and author of "Facing Death: The Deep Calling to the Deep." Smith worked with doctors and staff to inform difficult patient care decisions as chairman of Long Island College Hospital's Ethics Committee. This article was published in the Chicago Tribune and distributed by Tribune Content Agency.