Mama Might Be Better Off Dead: The Failure of Health Care in Urban America

While Jackie manages Cora’s at-home care and potential placement in a nursing home, Robert vies for a spot on the state’s kidney transplant waiting list. Since decisions about who is admitted to the waiting list are up to the personal discretion of individual doctors, Robert believes that he has to impress his doctor to get a coveted spot. This leads him to misrepresent his drug use to his doctor since he knows that drug users are more likely to be denied transplants. Drug use very frequently leads to the failure of transplanted organs, and since organs are such a limited commodity, doctors are hesitant to give them to patients whose chances of having a successful transplant are reduced. Given that Robert seems highly functional for a dialysis patient—he is able to work a part-time job in addition to his treatment—his doctor does not suspect that his drug use is debilitating and places him on the waiting list.

Black patients are almost guaranteed to wait longer for transplants than their white counterparts for several reasons. Outdated policies dictate that organ donors and recipients should be as close to genetic matches as possible, and Black people are significantly less likely to donate their organs, leaving Black recipients to compete for an even more limited set of organs. This system of distributing organs, however, has been disproven; doctors find that genetic matching is a relatively minuscule factor in ensuring the success of a transplant, especially with the introduction of medications that prevent the body from rejecting organs. The invention of a statewide agency for distributing organs has eliminated the role of individual doctor bias to some degree, but competing lists in other states “gerrymander” access to transplants in Illinois, reducing access for poor Black patients. Since glomerulosclerosis is an incurable condition, this complex system is one that Robert will have to navigate for the rest of his life.

As their general unwillingness to donate organs suggests, the Black community tends to be highly wary of the white medical establishment. While doctors and other healthcare professionals dismiss their feelings as “irrational” and “superstitious,” Abraham highlights the history of medical racism and abuse that has left the community feeling this way. In particular, the legacy of abusive “experiments,” such as the infamous Tuskegee Syphilis Study, has left Black patients with the paranoia that doctors are constantly seeking to use them for experimentation rather than to treat them carefully as patients. Tommy himself witnessed such unethical experimentation during his years in prison, where inmates were coerced into being infected with malaria for pay to facilitate research for a cure. Even as systems of review are put in place to prevent unethical studies from occurring, poorly devised experiments continue to slip through the cracks, often at the expense of Black and Brown patients.

Healthcare workers’ failure to understand the perspective of their Black patients and the very real history of medical abuse directed at the Black community leaves them unable to communicate with them effectively. Mistrust between doctors and patients only exacerbates the problems of healthcare inequity that are fundamental to the nation’s provider programs.

By 1991, Cora’s health has taken a turn for the worse. Unwilling to eat after her second amputation, doctors start using a feeding tube to make sure that she stays alive. Jackie’s decision to place Cora in a nursing home is delayed because Cora is diagnosed with MRSA, and no facilities are willing to admit her for fear of infecting other residents. In the meantime, Cora’s doctor, Dr. Stone, tries desperately to save her life, in denial about the inevitability of her death. In interviews, Dr. Stone admits that his Jewish faith motivates him to avoid conversations about end-of-life procedures with his patients. With other Jewish patients who have similar values, this method does not cause many problems. However, with patients who come from other cultures, this failure to communicate can have devastating effects. Despite the futility of Cora’s condition, which indicates that a do-not-resuscitate (DNR) order might be the most humane way of proceeding, no such order is placed because Dr. Stone cannot get any help from a DNR coordinator.

Jackie wakes up from a dream about the death of her aunt, Nancy, and takes it as a sign that Cora is about to die. She and Cora’s cousin, B. J., visit Cora in the nursing care facility where she has been placed, Oak Forest Hospital. Cora is unconscious and barely recognizable, and Jackie and B. J. leave after bringing her flowers and sitting with her for a little while. Two days later, Jackie receives word from the staff at Oak Forest that Cora has died. Medical records indicate that repeated attempts to resuscitate her, including the use of electric shock and cardiac stimulants, failed before doctors gave up, though Jackie is provided with no indication that the death was anything but peaceful. At the funeral, community members remember Cora as she was before the illness and tell Jackie how proudly Cora always spoke of her. Cora is embalmed and looks serene in death. Abraham imagines Cora alive, at the front of the church in her best outfit, preparing to sing “Amazing Grace.”