Several years ago, MapQuest directed me on a 10-hour drive to visit my father in a Florida hospital. Complications from diabetes, including blindness, kidney failure, congestive heart failure, and a below-the-knee amputation, had taken their toll. This time my father, 69, was hospitalized for an infection of unknown origin that physicians could not name, despite their many attempts to grow cultures.
I did not know it at the time, but my father was dying.
Once I arrived at the hospital from Durham, North Carolina, I could hear his screams from the nurses’ station. “Never mind. I hear him,” I told the nurse whom I had just asked the location of my father’s room. “I’ll follow the sounds.”
That any patient would be left in so much pain that his screams could be heard down the hall was unacceptable to me. That this patient was my father, a man I had always known as a big, strong former football player – the kind of man other men didn’t dare cross (but who was also loving and gentle) – was difficult for me to process. Yet, here I was, being guided to his hospital room by the sound of his cries. Despite being a trained philosopher with an interest in bioethics, I had not yet begun to think about the ways in which racialized health disparities manifest even at the end of life. My father’s excruciatingly painful process of dying was but one example.
Gaps while living, gaps while dying
It is well documented that African-Americans experience excess mortality, or deaths beyond the expected mortality rate. However, even if disparities in the mortality rate for African-Americans were rectified tomorrow, the fact remains that we will all eventually die. And how we die matters.
According to a 2013 Pew Research survey, 72 percent of American adults have given at least some thought to their end of life wishes, with 37 percent of American adults having given their end of life wishes a “great deal of thought.” Some of these wishes include decisions about pain management, maintaining quality of life, and whether to continue aggressive medical treatment for terminal illness.
Additionally, research shows that people tasked with making treatment decisions for loved ones who cannot express their own wishes sometimes experience distress about watching their loved one suffer. Even months or years later, they wonder whether they made the “right” decision.
Black patients generally receive worse pain management in primary care environments and emergency rooms. Even black children are not treated for their pain to the extent that white children are. Some attribute this to false beliefs about biological differences between black and white patients, including the belief that black people have “thicker skin” and, therefore, do not experience as much pain as whites. These false beliefs lead to inaccurate pain assessments by physicians evaluating black patients and an unwillingness to take the pain complaints of black patients as seriously.
This disparity in black patients’ pain management continues even as black patients are dying. Families often want to ensure that their loved ones are as comfortable as possible once patients reach the point where death is near. Racialized gaps in pain management lead to a denial of humane comfort care that contributes to unnecessary suffering for black patients and their loved ones.
Inadequate pain management is but one aspect of the lower quality of care that black patients report in general that affects when and how black patients die. In December 2015, 57 year-old Barbara Dawson was arrested and forcibly removed from Calhoun Liberty Hospital near Tallahassee, Florida, after she refused to leave without further treatment. Although she had been evaluated in the hospital, she was discharged despite her continued complaints of difficulty breathing. Hospital personnel apparently assumed she was faking her symptoms and called police to arrest her for being disruptive. Dawson collapsed before she could be placed in the police cruiser and was returned to the hospital where she died an hour later from an undetected blood clot in her lungs.
Dawson may or may not have been at the end of life when she arrived at the hospital. However, hospital staff allowed her condition to deteriorate by not taking her complaints seriously. She died only feet away from people who could have, at minimum, eased her process of dying. The hospital was later fined US$45,000, and Dawson’s estate settled a lawsuit against the hospital for $200,000 in 2017.
Dawson’s experience is a dramatic and appalling case. Nevertheless, one groundbreaking study revealed that physicians generally interact less – both verbally and nonverbally – with black patients who are dying than with white patients who are dying. At the end of their lives, black patients do not receive the same comfort care, including eye contact and touch, from physicians that white patients do.
The U.S. health care system can improve care for all patients at the end of life. However, this system still denies black patients the kinds of interventions that white patients often take for granted. This denial contributes to more painful, horrific deaths of black patients and compounds the grief of their loved ones.
In my father’s case, even as part of me still hoped for a miracle, the thing I wanted most in the world was for him to be as comfortable as possible. That this did not happen despite my best efforts still haunts me when I think about the end of my father’s life.
In April, a 25-year-old black woman named Chikesia Clemons was violently arrested by police at a Waffle House restaurant in Alabama.
A video of the arrest that went viral shows police pulling Clemons from her chair and throwing her to the floor. In the process, her breasts are exposed and her dress rides up in the back. When she attempts to cover her breasts, the two officers on top of her threaten to break her arm for “resisting.”
Clemons’ experience is not uncommon. In the U.S., black women are not afforded the same regard for bodily privacy as white women.
Another example: In an investigation of the Baltimore City Police Department, the Department of Justice found that the Baltimore Police Department frequently engaged in unjustified strip searches of African-Americans. In one instance, Baltimore police conducted a strip search of a black woman, including an anal cavity search, on a sidewalk in broad daylight and in full public view. The woman’s pleas to not be forced to disrobe in public were ignored. Her offense? A broken headlight.
While the #MeToo movement has been successful in bringing down several high-profile assailants, critics continue to argue that it has been monopolized by middle- and upper-class white women, particularly white Hollywood actresses. This, despite the fact that a black woman, Tarana Burke, created the Me Too campaign more than a decade ago. These criticisms reflect the fact that black women have experienced sexual violence differently than white women.
As a philosopher of race and gender who has written about sexual harassment, I offer historical context on the ways that black women experience sexual abuse, often by the authority of the state, as a way to think about black women’s contemporary experiences as the kinds of experiences that #MeToo should address.
In this Dec. 8, 2017, file photo, Anita Hill and Fatima Goss Graves join a discussion about sexual harassment in Beverly Hills, Calif. The sexual assault allegations against Supreme Court nominee Brett Kavanaugh recall Hill’s accusations against Clarence Thomas in 1991, but there are important differences as well as cautions for senators considering how to deal with the allegations. (Photo by Willy Sanjuan/Invision/AP, File)
History of black women’s bodies on display
As early as the 17th century, European men wrote travel narratives about their trips to West Africa to capture, enslave and trade African people. Their writings offer a window into how they perceived African women and what they thought primarily European male readers would find titillating.
In particular, their descriptions of West African women’s style of dance played a role in shaping European perceptions of black women’s sexual immorality and availability.
These travel accounts were the popular media of their day and offered some of the first reports of continental Africa to average Europeans. For example, Frenchman Jean Barbot wrote of African men and women “knocking bellies together very indecently” while “uttering some dirty mysterious words.” Meanwhile, naval officer Abraham Duqesne characterized African women as desiring the “caresses of white men.”
Because African women differed from European women both in attire and bodily movement, European travel writers regarded African women as sexually available and immoral. European settlers carried these attitudes to the United States where enslaved black women were subjected to violent sexual abuse and forced nudity as routine social practice, in ways that would have been unthinkable toward white women.
Sexual violence and the father of gynecology
By the 19th century, treating black and white women differently was firmly entrenched in society. Nowhere was this more evident than in the practice of J. Marion Sims, the physician widely regarded by gynecologists as the “father of modern gynecology.” The convention of the period was for physicians to conduct gynecological examinations of white women with averted gazes while the patients remained as clothed as possible.
However, Sims also conducted medical experiments on enslaved black women that ultimately resulted in a technique to repair vesicovaginal fistula, an opening that can develop between the vaginal wall and the bladder or large intestine, sometimes as a result of childbirth. The enslaved black women were stripped completely naked and examined on all fours, as Sims and other physicians took turns using a specially created speculum that enabled full viewing of the vagina. Private citizens were also allowed to watch these experiments and they, too, were invited to witness the full exposure of enslaved women’s vaginas.
Sims conducted his experiments without anesthesia, despite the fact that ether was known and in use by the time he performed later surgeries. Black women were denied anesthesia on the grounds that black people did not feel pain in the same ways that white people felt pain, a perception that still exists today. For example, one study found that when people viewed images of blacks receiving painful stimuli, like needle pricks, they responded with less empathy than when they viewed similar images of white people in pain.
Sexual violence in a court of law
In New York in 1925, another historical example shows how black women’s exposed bodies have been treated with indifference. Kip Rhinelander, a member of New York’s high society, was set to wed Alice Beatrice Jones, a working-class biracial woman. Their union drew national attention.
Although New York did not legally prohibit interracial marriage as other states did at that time, society strongly disapproved of interracial marriage.
Once their marriage was made public, Kip filed for divorce on the grounds of fraud. The salient question in the divorce hearing was whether Kip knew that Alice was black at the time of their marriage.
In order to answer that question, Alice’s attorney suggested that Alice bare her breasts in front of the all-white male jury, judge and attorneys in order to prove her racial identity. By viewing the shading of her areolas and legs, he said, the jurors could assess whether Kip – who had admitted to premarital sex with her – should have known her racial identity.
The judge directed Alice to follow through. Neither Alice Rhinelander’s tears nor her connection to a prominent white family could save her from the indignity of forced nudity in front of strangers. Ultimately, the jury decided that Alice was, in fact, “of colored blood” and that she did not conceal or misrepresent her racial identity.
The past is present
The hostility to black women’s bodily privacy and dignity in these examples isn’t accidental. Rather, it is part of the history of how black women have been cast in U.S. society.
In the Sims and Rhinelander examples, the legal status of enslavement and weight of the court validated the coercive display of black women’s bodies. The Department of Justice found that the Baltimore police used the weight of their badges to force compliance with public strip searches. Likewise, in the Waffle House example, although Clemons’ initial exposure may not have been intentional, the police responded to her cries and her attempts to cover herself by using their authority to threaten her with further harm.
This is a unique form of sexual violence experienced by black women. The convergence of race and gender in black women’s lives has created the social conditions in which black women are coerced and often expected, under threat of punishment by the government, to suffer the exposure of intimate body parts.
Race and gender converge in black women’s lives and have created the social conditions under which black women are coerced and expected to suffer the exposure of intimate body parts, or else face punishment. If movements like #MeToo are serious about combating sexual violence, then they have to also understand these practices as sexual violence.
A photo of Jahi McMath shown at her funeral service at Acts Full Gospel Church in Oakland, Calif. AP Photo/Jeff Chiu
California teenager Jahi McMath, who suffered catastrophic brain injury as a result of a routine tonsil surgery, died on June 22, 2018.
Her death came after four years of her family fighting in court to continue her care in California. Eventually, they moved her to a facility in New Jersey, a state that accommodates religious views that don’t recognize brain death.
Much of the popular discussion in the case centered on the family’s refusal to accept the diagnosis of brain death. However, as a philosopher who writes on bioethics and race, I believe an underappreciated aspect of the discussion was the role of race – both in how the medical personnel dealt with the family and how the family interpreted their interactions with the medical establishment.
The surgery and outcome
On Dec. 9, 2013, the 13-year-old McMath entered Children’s Hospital and Research Center in Oakland, California, for what should have been a routine tonsillectomy. The young girl was, according to her mother’s account, frightened that something would go wrong. Her mother reassured McMath that she would be okay.
McMath’s post-surgical complications began about an hour after her surgery. A nurse provided a bin to catch the blood that McMath had begun spitting up. Although the nurses indicated to the family that some post-surgical bleeding was normal, two hours later, McMath’s blood filled two plastic bins and the bandages packing her nose were saturated with blood. Her hospital gown was also covered in blood.
According to the family, four and a half hours passed before a physician saw her, despite the family’s repeated pleas for intervention. The hospital has maintained that they can not discuss Jahi’s case in detail because of privacy laws. Bleeding complications, though rare, can occur after tonsillectomy because tonsils are near arteries.
As a result of the immense blood loss, McMath’s heart stopped and her brain was deprived of oxygen. Three days later, on Dec. 12, 2013, the medical staff at Children’s Hospital declared McMath brain dead. Hospital personnel encouraged the family to withdraw life support and donate her organs.
McMath’s family refused to accept the diagnosis, and a court battle to keep McMath on life support ensued.
A judge in California initially ruled that McMath could remain on life support until Jan. 7, 2014. However, the Alameda County coroner issued a death certificate anyway.
Philosopher Jeffrey P. Bishop, who holds the chair of health care ethics at Saint Louis University, writing in Harvard Divinity School bulletin noted the ethical oddities of the case. In California, once two physicians confirm brain death, the patient is legally dead. The body is then technically released to the coroner before being released to the family so that they can make arrangements. In the case of McMath, she was still in the hospital and on a ventilator when these procedures kicked in.
From the beginning, the case was tangled up with all sorts of questions regarding the nature and diagnosis of brain death. Although there are long-established criteria, how brain death is determined in practice can vary. These differences in practices can contribute to confusion, particularly among the lay public, about brain death.
Her family rejected the brain death diagnosis alleging the hospital had a conflict of interest and simply wanted McMath’s organs.
Revisiting a history of medical racism
Rather than dismiss the family’s concerns as paranoid or ignorant, it is important to understand the historical realities faced by black patients in their encounters with the U.S. medical system.
There is a long historical record of using African-Americans for medical experimentation. For example, medical experimentation performed by J. Marion Sims, “the father of modern gynecology,” highlights the medical establishment’s disregard for black people.
Sims, who began conducting his gynecological experiments in the 1840s, is credited with developing a surgical procedure to repair vesicovaginal fistula, a hole that develops between the vaginal wall and the bladder, resulting in incontinence. However, Sims achieved his success by experimenting on enslaved women, often without anesthesia.
Sims wasn’t the only one. During the 19th century, medical schools used both enslaved and free black people, often without their consent, to teach their white medical students anatomy, disease progression and diagnosis. This practice continued after slavery.
Additionally, the graves of African-Americans were robbed and their bodies disinterred so that medical students could use black bodies as cadavers. Aware of these practices, African-American communities were deeply suspicious of local medical schools and unsure whether the medical personnel were actually “treating” them or merely “experimenting” on them.
Few examples of the abuse of African-Americans in medical experimentation loom larger than the Tuskegee syphilis experiment – a 40-year-long study of disease progression of syphilis in 600 men in the Tuskegee, Alabama, area that began in 1932. The study was sponsored by the U.S. Public Health Service.
None of the 399 men who had syphilis were ever told of their diagnosis. Nor were these men or their partners treated with penicillin once penicillin became the standard treatment for syphilis in 1945. In 1997, President Bill Clinton issued a formal apology on behalf of the U.S. government to the eight remaining survivors of the Tuskegee experiment.
One presidential apology, however, could not erase the sense of mistrust that many African-Americans feel toward health care institutions.
And the medical injustice continues: There are wide gaps in outcomes between whites and African-Americans in a variety of diseases. For example, the American Cancer Society reports that, of all the racial and ethnic groups in the U.S., African-Americans, are more likely to die from most cancers.
Lower quality of care?
African-Americans also report lower quality of health care and greater dissatisfaction with the care they receive. In addtion, they are significantly more likely to report experiencing racial discrimination and negative attitudes by health care personnel than non-Hispanic whites.
Medical mistrust and the resulting dissatisfaction have been connected to patient anxiety, as well as lower engagement in health care decision-making between patient and provider.
“No one was listening to us, and I can’t prove it, but I really feel in my heart: if Jahi was a little white girl, I feel we would have gotten a little more help and attention.”
Sadly, Winkfield is not alone in her suspicions.
It is possible that the ultimate outcome might still have been tragic. Even with the most attentive care, McMath might have died. However, the family feeling that the medical team did not do all that they could have done for their loved one, and that this, for them, was a function of race, needlessly inflicted additional injury.