New Orleans, Louisiana, United States
|The Little Prisoner. Goya, Francisco ca 1810-1812. Etching and Engraving|
on Woven Paper. Published in Gazette des Beaux-Arts, Vol. XXII. Public Domain:
Artstor through Michigan State University Library. Goya enjoyed great prestige
as portrait painter of the Spanish elite. However, in his private work his focus
was on the darker side of humanity, suffering and despair. In lithographs he depicted
the atrocity of war, the helplessness and confinement of the shackled prisoner.
Lack of trust can be an impenetrable barrier to the doctor-patient relationship and healing. A fundamental principle of medical anthropology is that, when faced with illness, the individual first turns to traditional remedies and cultural practices in which he has faith. If illness persists and vulnerability deepens, he may decide to seek out a healer, whether physician or shaman, to consult their medical armamentarium or spirit world. Implicit in the decision is a basic level of trust that the healer will try to help, or at least do no harm. This caveat is of such profound significance that Hippocrates incorporated it into an oath, which physicians have taken for millennia.
The U.S. prison system is the largest in the world, and incarcerates a disproportionately large percentage of men and women of color. African Americans make up 13% of the U.S. population and 37% of the total 6.8 million in the correctional population.1 In the “War on Drugs” in the 1980s, the U.S. implemented tough-on-crime penalties and long sentences for drug-related offenses. African American men and women have borne the burden of prosecution and incarceration—often for nonviolent, victimless crimes—and filled prisons beyond capacity. Many attribute the mass incarceration of African Americans to ongoing problems of poverty, an inequitable criminal justice system, and racism. Some refer to mass incarceration as the new Jim Crow or the new slavery, given the central theme of dehumanization that is central to both prison and slavery.2
Physicians who practice medicine in large inner city hospitals often attend African American patients who present for medical treatment in the late stages of disease. Delay in seeking treatment is due to a number of social and economic barriers. Often, however, the barrier is even more insidious: lack of trust in physicians and the health care system. Woven into the history of terrors visited upon African Americans, one of the most sinister was medical experimentation by prominent medical institutions. This history includes the Tuskegee Study of Untreated Syphilis in the Negro Male, which the U.S. Public Health Service (USPHS) implemented in Tuskegee, Alabama in 1932 to study the natural history of the disease.3 Effective treatment for syphilis, penicillin, became available in 1945. However, it was not administered to the 400 men with syphilis in the study, though they were told they were being treated. Doctors observed infected men progress through the stages from secondary to tertiary syphilis, with its brutal neurologic manifestations. The fact that this study was allowed to continue for forty years (1932-1972) cleaved the trust of African Americans in medical research, and health care in general.
The history of unethical medical research includes Henrietta Lacks, a young African American woman who presented to the Johns Hopkins Hospital with cervical bleeding in 1952 and was diagnosed with aggressive cervical cancer. She was treated according to standard of care, with radium therapy. Tissue from her cervical biopsy was taken to the hospital lab, where it was cultured.4 Unbeknownst to her and her family, a few of her cervical cells multiplied exponentially, and took on a life of their own. She was the source of the first line of immortal human cells to be cloned. These so-called He-La (Henrietta Lacks) cells were sent to labs and research institutions all over the world. Not until years after her death did her family learn that Lacks’ cells had served as the basis for invaluable research, but also for untold profit by research facilities worldwide. This ethical nightmare wakened the medical community to recognize patient autonomy and the absolute necessity of informed consent. African American reluctance to participate in medical research became deeply entrenched.
The history of medical experimentation rubs salt into deep wounds and reflects earlier exploitation of the physical body, which African men and women suffered when they arrived in the Americas. Memories and images loom large: that of an ancestor dragged off a slave ship—naked, shackled and in chains—to the auction block for the body to be inspected and touched, orifices examined and penetrated. Atrocious acts were inflicted on bodies that were considered property: rape, branding of flesh, flogging, lynching. The enslaved bore savage punishments because they had no choice; the alternative was death. The exploitation of one’s physical body was likely woven into the collective psyche. Centuries later, within the realm of medicine, the African American individual has autonomy to decide if he will surrender his physical body to the ministrations of doctors, the majority of whom are white. Given the history of abuse and deception, trust may be too elusive to acquiesce.
The majority of men in prison have not encountered the health care system since they were children. But they have had direct and indirect experience of illness and suffering, and of seeing loved ones ravaged by chronic disease from absent or indifferent health care. In discussing their family medical histories with me, many patients in prison recall loved ones who suffered disastrous consequences from their interaction with the medical system: “She wasn’t that bad when they first put her in the hospital.”5 They never learned the cause of their mother’s death, and forever wonder about deliberate indifference, or worse, on the part of her physicians. These memories and doubts surface when they need health care in prison. It seems a great leap of faith for an inmate to ask for help, accept a diagnosis and treatment, while wondering if his physician can be trusted to do no harm.
There are additional reasons that trust in the context of prison is almost unattainable. In the doctor-patient relationship universally there is inequity of knowledge, power, and status. In prison medicine, the inequity is even more distorted. The physician is likely seen as an instrument of the system that contains and oppresses him. This system has a cardinal rule, which applies to all staff within a facility—avoid doing anything that could make an inmate feel special. This rule is incongruous in the healing context. To develop trust, a patient needs to feel special to his or her physician, even for a brief moment in time. The prison rule presents a challenge to physicians; as with all rules, it is not absolute. The physician can choose to look beyond the prisoner with his ID number, into the eyes of a unique individual who has come seeking help, and who is – as a human being – special.
In spite of these barriers, many men choose to become a patient in prison. However elusive, trust can develop. It takes time. Trust is more likely when the physician expresses interest in the patient’s life story and the meaning he ascribes to his illness. Ironically, it requires the physician to give up her expectation of a patient’s trust.
Over time I have heard life stories with many unique twists and turns, but consistent themes: experiencing hunger in childhood; witnessing a mother high on crack cocaine; seeing a sister shot in the head at a porch party; hiding and watching city police beat young men on the street for no other reason than they are there. I have learned that one of the greatest fears of men in prison is that of becoming ill and weak, no longer able to defend oneself, at the mercy of other inmates and corrections officers. Men with terminal illness have told me they do not fear death itself. The terror is in the experience leading up to it: being isolated in a hospital-prison cell to die alone with no loved ones—no one to trust—at beside. Sometimes the fear and lack of trust extend beyond death in the question, what will they do with my body when I die in there?
My life-sentenced multiple myeloma patient, Mr. Moses, and I daily discussed his approaching death; he consistently responded, “I’m peaceful.” However, he agonized that he might die before his mother, Gertie, who was eighty-seven years old and very healthy. He was her first-born. He told me he never got over “breaking her heart” when he was sent to prison forty years earlier. In the past year his mother lost a daughter to gun violence and a son to heroin overdose; the year before that, another son died of heart disease. “She just couldn’t take it if I pass before her,” he told me two weeks before he died. I have learned many things from my patients in prison. One of the most poignant is what the incarcerated regard as the harshest punishment of prison—not being free to attend his mother or grandmother at her sickbed, or worse, not being able to attend her funeral.
Health care in prison exists as a world unto itself; in a relative sense, a rarified atmosphere. It provides a brief respite from the pervasive atmosphere of brutality and violence. For the time he is with a nurse or doctor, the inmate becomes a patient. For a moment, in this role, there exists the potential to transcend the hypervigilance that is absolutely necessary everywhere else in prison, and—perhaps—to trust. Nietzsche said of the ancient Greeks that they were hypervigilant and keenly aware of the terrors of existence, which led them to create the dramatic form, tragedy. The incarcerated also exist in a state of hypervigilance, due to terrors of a different sort, leading to a different form of tragedy.6
- Nellis, Ashley. “The Color of Justice: Racial and Ethnic Disparity in State Prisons”. The Sentencing Project. Washington, D.C. 2016.https:www.sentencing project.org/publications/color-of-justice-racial-and-ethnic-disparity-in-state-prisons/
- Alexander, Michelle. The New Jim Crow: Mass Incarceration in the Age of Color Blindness. New York,N.Y.: The New Press. 2010.
- Charlotte, Paul and Barbara Brooks. “The Rationalization of Unethical Research: Revisionist account of the Tuskegee Syphilis Study and the New Zealand Unfortunate Experiment”. American Journal of Public Health;October:105(10):e1219.doi:10.2015/AJPH.2015.302720.
- Skloot, Rebecca. The Immortal Life of Henrietta Lacks. New York, NY: Crown. 2010
- Burke, Gail. Personal communications with patients in health care clinic at Ionia Bellamy Creek Correctional Facility, Ionia MI from 2009-2018. This reference pertains to all subsequent patient quotes in this essay.
- Nietzsche, Frederich. The Birth of Tragedy. Leipzig: E.W. Fritzsch. 1872.
GAIL BURKE, D.O., M.A., recently moved to New Orleans from Michigan. She practices Family Medicine in the Louisiana State University/University Medical Center ambulatory clinic in downtown New Orleans, and teaches first and second year LSU medical students. Before her move, she was the medical director of one of Michigan’s largest correctional facilities for men for nine years. She is a graduate of Michigan State University (MSU) College of Osteopathic Medicine and received a master’s degree in medical anthropology from MSU. Dr. Burke’s medical practice focuses on providing primary health care and patient education to the underserved.