Race and culture still matter 50 years after Tuskegee study

Fifty years ago, a Associated Press reporter discovered the infamous “Tuskegee Study of Untreated Syphilis in Black Males.” Tragically, since doctors deliberately refused treatment, 28 of the 600 study patients died, 100 died of complications from syphilis, 40 of their wives were infected, and 19 children were born with congenital syphilis. This shameful 40-year study from 1932 to 1972 left communities of color with a lasting distrust of the institution of medicine, especially medicine in conjunction with the government.

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

Every aspect of American life includes discrimination, hurt, and injustice resulting from racism woven into our social fabric. Health care is no exception. But the stain of unequal opportunity to prevent disease and receive proper medical care seems particularly repugnant and shameful, as it does in an industry that exists to care for others and save lives.

It seems that negative stereotypes of various communities are so entrenched in American society that it is nearly impossible not to internalize negative attitudes and harbor them in the subconscious.

In 2017, a summary report of 42 separate research papers presented compelling evidence that most healthcare providers have implicit biases. Specifically, most have automatic positive attitudes toward whites and negative attitudes towards non-white people. Most studies have used the Implicit Association Test, or IAT. The IAT website reports that two-thirds (68%) of the more than 3 million people tested had a “strong”, “moderate” or “mild preference” for white people.

Many studies, covering many sources of pain in various medical settings, reveal that Black patients are 22% less likely than whites to receive medication for their pain.

Black people may rightly be suspicious that doctors don’t offer them the most expensive tests and treatments and the latest technological advances as often as they do for their white patients.

Paradoxically, at the end of life, racial and ethnic minorities receive more intensive treatments that inflict great suffering but provide little value—and at great expense. In 2021, a research synthesis report on sociodemographic disparities in health care found that black people are less likely to receive hospice benefits and palliative care, including the end-of-life care option of medical assistance in dying for terminally ill adults. Medical assistance in dying is authorized for more than 1 in 5 US Residents: It is allowed in California, Colorado, Hawaii, Maine, Montana, New Jersey, New Mexico, Oregon, Vermont, Washington, and the District of Columbia.

Black distrust of doctors naturally creates the suspicion that doctors gave up prematurely before all healing options were exhausted.

In June 2021, investigators examining data from more than 21,000 patients who died in hospital from metastatic cancer found that people from racial and ethnic minority groups were more likely to be admitted from a ward emergency and receive invasive mechanical ventilation and incurred higher costs for their end-of-life care compared to 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 all that it means to be human. It includes all experiences of 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 to escape from “mere existence” when all the precious gifts of human life are gone.

Many people in historically underserved communities do not have a primary care physician. They get care through emergency departments or urgent care clinics. This harsh reality tends to funnel patients into high-intensity treatment environments, whether invasive treatments are tailored to disease stage or personal preference.

What can be done to improve this situation? Among policies designed to increase the supply of family doctors in underserved communities are incentives such as student loan forgiveness. Similarly, regulatory bodies could expand practice guidelines and improve the deployment of nurse practitioners and physician assistants to underserved areas. The expansion of telemedicine could make primary care more widely available. It’s also important to remove barriers to increase the number of people of color who pursue health care careers. Postgraduate training for physicians increasingly includes training aimed at compensating for inherent biases and building 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 biases embedded in every corner of the law, American politics, 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 Combes Lee is President Emeritus and Senior Advisor to the patient advocacy group Compassion & Choices. She was also a nurse and medical assistant for 25 years. This editorial includes excerpts from the second edition of Lee’s book “Finish Strong: Putting Your Priorities First at the End of Life.” The Reverend Paul Smith is a civil rights veteran and author of Faced with death: the depths call to the depths. » Smith has worked with physicians and staff to inform difficult patient care decisions as chair of the ethics committee at Long Island College Hospital.

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Denise W. Whigham