Mama Might Be Better Off Dead: The Failure of Health Care in Urban America by Laurie Kaye Abraham is a 1993 journalistic account of one Chicago family’s struggles within the American healthcare system as they suffer from incurable chronic illnesses. Abraham, an investigative medical journalist who later went on to become a senior editor at Elle magazine, followed the Banes family between 1989 and 1990 to humanize the broader issue of healthcare inequity which was gradually coming to the forefront of the American political zeitgeist at the time. The book originally took the form of several articles published in the Chicago Reporter, where Abraham worked at the time, before morphing into a book-length project. Throughout her time with the Banes family, Abraham compiled a sociological account of some of the healthcare industry’s most crucial failings, including The Negative Effects of the American Medical-Industrial Complex and endemic Misunderstandings Between Medical Workers and Marginalized Patients.

This guide refers to the 2019 Kindle e-book edition of the text, published by the University of Chicago Press, with a foreword by Dr. David A. Ansell.

Content Warning: This guide discusses systemic racism and poverty, patient neglect and abuse, drug use, homelessness, and gun violence. Mama Might Be Better Off Dead uses the term “blacks” to refer to Black people in general. This guide will only use such terminology in direct quotations of the text.

Summary

The Banes family is a low-income, Black family living on the west side of Chicago in a neighborhood called North Lawndale. The family members are Jackie Banes, the mother of the household who struggles to care for her sick relatives and children simultaneously; her husband, Robert, whose life-threatening glomerulosclerosis requires him to receive dialysis treatment multiple times a week; Cora Jackson, Jackie’s elderly grandmother, whose diabetes has led to a series of complications including the amputation of one of her legs; and the three children, Latrice, DeMarest, and Brianna. Jackie’s father, Tommy Markham, is also followed by Abraham to a lesser extent. Tommy suffered a stroke in his late forties, leading to partial paralysis on the left side of his body and confining him to a wheelchair.

Abraham introduces readers to the Banes family’s struggles within the healthcare system in a room at the University of Illinois Hospital. Robert was admitted due to consistent blood in his urine for a week, and he underwent a cystoscopy in order to understand the source of the bleeding. There are indistinct suggestions that Robert might need surgery to fix the problem, but he is unable to get clear information about it from any of the doctors or nurses who are caring for him. Jackie arrives at the hospital with some food from home (including a piece of cake from Brianna’s first birthday party, which Robert had to miss), and the two watch some television together before she has to return home to take care of the rest of the family. It takes three days for Robert to be dismissed from the hospital, and ultimately, it is determined that the bleeding from his rejected kidney will eventually stop on its own.

Because of his renal failure, Robert is required to receive dialysis treatment three times a week to prevent the deadly build-up of toxins in his body. In addition to the time commitment of the dialysis appointments themselves, transportation to and from also takes an immense amount of time: Robert wakes up at 5:30 am on these days for a 20-minute ride that arrives at the clinic at six o’clock (if he had to take the bus, the ride would take an hour). These chartered rides are provided by the Chicago Transit Authority, and Robert’s dialysis treatments are covered by Medicare, the federal insurance program for the elderly and disabled. Nevertheless, the rigors of the treatment itself and the schedule it requires place immense limitations on Robert’s ability to thrive. Though he is, exceptionally, able to work a job during night shifts, he is also dependent on cocaine, and Jackie often finds that large sums of the family’s income have been spent on drugs. Doctors and social workers who are supposed to help manage these burdens for Robert are oftentimes so overworked that they can only deal with his needs superficially, and he is often uninformed about his own medical needs.

Like Robert, Cora (called Mrs. Jackson by Abraham) also has a plethora of difficulties in navigating the healthcare system. In addition to receiving Medicare due to her age, she is also enrolled in the spend-down Medicaid program, which provides coverage for patients whose medical bills are too high to afford because of their monthly income. Because eligibility is reviewed on a monthly basis, the Banes family is constantly in the process of securing Cora’s Medicaid, and oftentimes the coverage does not come in time to cover the care. In order to cope with this immense financial burden, Jackie rations Cora’s medicine and sticks to at-home care that is as cheap as possible, sometimes not realizing that Cora qualifies for paid-for at-home care programs. In fact, very little is communicated to the Banes family about what they do or don’t qualify for. This lack of consistent medical support ultimately results in the amputation of her leg, the worsening of her vascular illness, and a sharp decline in her mental health due to her loss of mobility.

When Abraham follows medical workers at Mt. Sinai Hospital, one of North Lawndale’s only accessible medical facilities, she finds them overburdened and desensitized to the struggles of the community that they serve. She details the minutes of a single nighttime shift at the emergency room and is astounded that the department is forced to take cases that would ordinarily be designated elsewhere because of broader failings in the system. “The emergency room […] is at once a symptom of a diseased health care system and a makeshift, unreliable cure for what ails it” (96), she writes. Originally established as a hospital for the Eastern European Jews who inhabited the area in the early 20th century, Mt. Sinai decided to remain in North Lawndale and serve its impoverished Black population in the 1980s. This decision meant making huge financial sacrifices, however, and was only reached after decades of trying to transition to a different business model. With incredibly limited funds, the hospital cannot provide thorough care, and it relies disproportionately on the minority of its patients who have private healthcare coverage.

With a strained medical system failing to provide sufficient care for most of its low-income, marginalized patients, the burden falls to family members like Jackie to serve as makeshift nurses. As Cora’s health declines and her husband waits for a new kidney transplant, she finds herself having to make increasingly difficult decisions regarding her grandmother’s health. Eventually, Cora’s second leg is amputated due to the progression of her disease, and Jackie decides that Cora needs to be sent to a nursing home to receive constant care. With all of her other responsibilities at home ongoing, this transition means that Jackie cannot see her grandmother regularly any longer. Furthermore, she becomes frustrated that doctors and nurses are not providing adequate communication about Cora’s health.

These miscommunications take the forefront during the end of Cora’s life and Robert’s mission to receive a kidney transplant. Robert misrepresents his drug use to his doctors to be viewed as a viable candidate for the transplant. He makes it onto the list, but it will likely be years before he receives a new kidney. At the nursing home, doctors have a difficult time initiating conversations with Jackie about her grandmother’s wishes for end-of-life care. When Cora dies, she goes through a series of strenuous, failed resuscitation attempts as a result. Jackie and other Black patients have trouble trusting doctors who keep them in the dark, especially after the long history of racialized medical abuse that haunts the Black community. This cycle of miscommunication and mistrust is just one of the many compounding failures that Abraham observes undermining the Banes family’s healthcare and quality of life.