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

by Laurie Kaye Abraham

Mama Might Be Better Off Dead is an unsettling, profound look at the human face of health care. Both disturbing and illuminating, it immerses readers in the lives of four generations of a poor, African-American family beset with the devastating illnesses that are all too common in America's inner-cities.

The story takes place in North Lawndale, a neighborhood that lies in the shadows of Chicago's Loop. Although surrounded by some of the city's finest medical facilities, North Lawndale is one of the sickest, most medically underserved communities in the country. Headed by Jackie Banes, who oversees the care of a diabetic grandmother, a husband on kidney dialysis, an ailing father, and three children, the Banes family contends with countless medical crises. From visits to emergency rooms and dialysis units, to trials with home care, to struggles for Medicaid eligibility, Abraham chronicles their access (or lack of access) to medical care.

Told sympathetically but without sentimentality, their story reveals an inadequate health care system that is further undermined by the direct and indirect effects of poverty. When people are poor, they become sick easily. When people are sick, their families quickly become poorer.

Embedded in the family narrative is a lucid analysis of the gaps, inconsistencies, and inequalities the poor face when they seek health care. This book reveals what health care policies crafted in Washington, D. C. or state capitals look like when they hit the street. It shows how Medicaid and Medicare work and don't work, the Catch-22s of hospital financing in the inner city, the racial politics of organ transplants, the failure of childhood immunization programs, the vexed issues of individual responsibility and institutional paternalism. One observer puts it this way: "Show me the poor woman who finds a way to get everything she's entitled to in the system, and I'll show you a woman who could run General Motors."

Abraham deftly weaves these themes together to make a persuasive case for health care reform while unflinchingly presenting the complexities that will make true reform as difficult as it is necessary. Mama Might Be Better Off Dead is a book with the power to change the way health care is understood in America. For those seeking to learn what our current system of health care promises and what it delivers, it offers a place for the debate to begin.

Genres: Nonfiction, Sociology, Medicine, Health, Medical, Health Care, Politics

297 pages, Paperback

First published January 1, 1993

Reviews

[Stitching Ghost · Rating 4 out of 5]

This book is heartbreaking. It was impossible not to feel for the mother in the family and all she had to sacrifice to just make it so that her family could receive some modicum of care. It's heartbreaking to think of all the people like her who have so much potential that are ruined by dysfunctional and overly complex systems that they have no hope to learn to navigate when even the professionals that should be able to orient them can't see the whole picture. I read the 2019 edition of this book and although this book was originally written more than 30 years ago it still feels surprisingly and sadly current. I cannot beg Canadians who think we would fare better with a privatized healthcare system to read this book enough, this is the kind of reality some of our provincial premiers are setting us up for if we don't get serious about pushing back like yesterday!

[Jennifer Richardson · Rating 5 out of 5]

Should be required reading for anyone comparing the Obama health plan to Nazis, but then, they would have to know how to read. . .

[Karen chandler/Hollander · Rating 5 out of 5]

I highly recommend this book. I first read it when i was a new medical Social Worker in the Chicago Metro area. While we'd like to think things have improved greatly in the 30 years since this was written and i first read it, the same struggles remain and the same inequity in available resources also remain. I have recommended this book countless times in my professional gatherings.

[Kathleen · Rating 4 out of 5]

this book was incredibly insightful on the healthcare system in america. it’s so upsetting to see that low-income individuals, who are at or near the poverty line, are not poor enough to qualify for medicaid, causing them to be uninsured. it’s so frustrating to see that so many individuals and families are unable to get access to equal healthcare and so many diseases are left untreated because people can’t afford it. in countries like canada and the united kingdom, where healthcare is universal, they do not face problems with healthcare like we do in america. these countries actually have a lot of positive health outcomes. meanwhile, america is known to have one of the most expensive healthcare systems, with the funds and ability to cure cancer and other diseases, with advanced technologies and new medications. but, we don’t have the ability to immunize children. this book does an incredible job depicting the flaws of the US healthcare system and how a family in an urban area, suffers from these flaws.

[Iris · Rating 1 out of 5]

This book feels like it was written so polite racists can read it and say, "look how terrible those poor people have it. They've been down so long there's just no helping them anymore." The subjects are given no dignity, and very little space to actually tell their own story- the author's adjectives are given precedence.

[Harriett Burns · Rating 3 out of 5]

I can't say that I enjoyed reading this book, but I'm glad that I did. The most depressing part of this pretty depressing book is that it was written in the early 1990's and I can't see that much has improved about our healthcare system in the United States. I started reading the book before the pandemic really hit the U.S. and it was hard to keep going after it hit. But it was leant to me by a respected friend and colleague so I kept going. And, in the end, it helps highlight all the reasons social determinants of care matter. COVID is highlighting that, too. Will we respond in the right way?

[Jay · Rating 5 out of 5]

reminding myself to recommend this book to anyone practicing healthcare along Ogden Avenue.

[Berit Lubben · Rating 5 out of 5]

i can honestly say this book changed my life. it’s altered my career path and while it could be written slightly more powerful the content is incredible

[Gloria Chen · Rating 5 out of 5]

This book is a bit dated, but unfortunately, the issues discussed in it do not seem to have improved much in the 20+ years since it was published. I learned a lot reading it, and some of those thoughts are in this essay I wrote for the class it was assigned in:


Neglect of Poor Urban Blacks in the American Health Care System

Laurie Kaye Abraham’s Mama Might be Better Off Dead: The Failure of Health Care in Urban America chronicles the consequences of an inadequate and inequitable health care system on an African American family living in Chicago, between May 1989 and April 1990. Mrs. Jackson suffers from diabetes and loses first one leg then the other to infection. Robert Banes is on dialysis due to focal glomerulosis, a disease that scars the kidneys until they are destroyed. Tommy Markham’s high blood pressure, coupled with alcoholism and smoking, led to a stroke, leaving him partially paralyzed. All are publicly insured. As her various family members fall ill, Jackie Banes cares for them along with her three children, but oftentimes she simply cannot make ends meet. Abraham describes the Banes’s trials to illustrate her overall thesis that poor urban blacks receive lower quality health care than other Americans due to social determinants of health and inequities in insurance. She furthermore suggests reform to the system through universal health care, an overhaul of Medicaid, and a transition from emphasizing curing to emphasizing caring. Though Abraham clearly enumerates problems of racial disparities, unequal access to care, and overdependence on late-stage treatment for poor urban blacks, her proposed reform addresses mainly structural challenges of insurance coverage while doing little to ameliorate the social issues she discusses.

The poorer health outcomes experienced by urban blacks in comparison to other racial groups have many social influences, Abraham describes, including racial segregation, poverty and lack of communication with health care providers. “Poor minorities are debilitated by chronic diseases earlier in life than whites,” she notes (1993, p.151). For instance, Tommy was just 48 when he suffered a stroke due to high blood pressure. Residential segregation results in adverse health effects, such as through substandard housing as in the Banes’s crumbling neighborhood. In 1990, Chicago’s dissimilarity index was 0.836, meaning that 83.6% of blacks would have to move for housing to be desegregated (Gleason & Vigdor, 2001). Unsafe structures, insect and rodent infestations, mold growth and lack of heating are a few of the health hazards that substandard housing poses to poor urban blacks (WHO, 2017). Indeed, the Banes are described dealing with cockroaches and a rat. In addition, poverty leads to chronic stress and physical symptoms such as high blood pressure beginning in childhood (Evans, Brooks-Gunn & Klebanov, 2011). Poverty also prevents the Banes from finding transportation to doctor’s appointments and paying for medicines. Once in health care settings, social factors can also interfere with communication; the Banes were often unclear on their medical statuses. Largely non-black upper- and middle-class health care providers are better able to communicate with non-black patients, and even well-intending practitioners may exhibit aversive racism, appearing cold and withdrawn, when interacting with black patients (Van Ryn, 2011). Thus, black patients are less likely to receive the same quality of care that white patients do.

Abraham contends that inequities in health care access stem from the shortcomings of insurance. Many Americans are covered by their employers, but many low-wage jobs do not offer health benefits. Poor urban blacks, such as the Banes, rely on Medicaid, for the poor, and Medicare, for the elderly. Requirements for public insurance are stringent, for example, making no more than 58% of the federal poverty level. This leaves many uninsured, without reliable access to care. Even for those who do qualify, services are limited. Medicare only covers what it deems to be “medically necessary,” and medication and transportation to doctor’s appointments are apparently not. Thus, Jackie is forced to ration medicines and forgo multiple appointments for Mrs. Jackson when the household is strapped for cash. Patchwork services exist that can provide additional care, but patients often are not aware of them. For example, Mrs. Jackson experiences major depressive disorder and could benefit from a home psychiatric program at Mount Sinai, but she is never referred and her family does not know to ask. The confusing system of aid results in disadvantaged patients forgoing services. Patients in poor neighborhoods also rely on “storefront doctors” for primary care, but these practices may be substandard, with doctors who lack hospital privileges or medical specialty board certification. This was the case for the Banes’s family physician, Dr. Marino, who failed a peer review by the Department of Public Aid’s Medical Quality Review Committee. Emergency rooms, where ability to pay is not a factor in treatment, are where publicly insured and uninsured patients often turn to, but trauma units are not meant to build long-term relationships with patients and cannot substitute primary care.

Finally, Abraham argues that the emphasis in the health care system should be shifted from “curing” to “caring”. This suggests that for individuals who are dying or who are permanently disabled, resources should be spent not on futile cures but on end-stage care for patients at the end of their lives and therapy and technical training for disabled patients and families to adjust to caregiving. In the case of Mrs. Jackson, perhaps a feeding tube was less necessary than social counseling and hospice care. Before the progression of her illness to this point, Jackie could also have benefited from counseling and training to be a caregiver. While this proposal seems useful, it is unclear why Abraham abandons the argument she earlier raised on emphasizing prevention over treatment. Abraham describes how Medicare spent $120,000 on Mrs. Jackson’s care in the last 6 months of her life, but that half that amount earlier could have allowed Mount Sinai to establish a foot clinic for diabetic patients, and Mrs. Jackson’s foot ulcers might never have resulted in amputation. She also criticizes how Medicare refuses to fund bathroom bars that would prevent falls and hip fractures in the elderly, which Medicare must later treat. Preventative measures have the highest cost-benefit ratios, and improved primary care for poor urban blacks would reduce later health issues. Early life exposures can have major impacts on health throughout life, from neurodevelopment to diabetes risks, and IQ to expected earnings (WHO, 2017). Interventions early in childhood thus are crucial to improving health outcomes for disadvantaged groups. While shifting from curing to caring may be a worthy redistribution of resources, a greater emphasis on prevention may better reduce the need for both.

Overall, Abraham’s support for universal health care and shifting away from the emphasis on curing is justified by the inequities in insurance. Ensuring that every American receives basic health care would radically alter the landscape of health, and greatly increase poor urban blacks’ access to care. Still, many social issues described by Abraham would preclude treatment. More people would be insured, but if the quality of clinics in impoverished areas does not improve, many poor urban blacks will continue to face barriers to access, such as poor primary care and inability to travel to further locations for appointments. And though universal health care is a step towards more equitable health outcomes, it does nothing to address the underrepresentation of minorities in health care provision, with fewer black medical students matriculating in 2014 than in 1978 (Sullivan, 2016). Though Abraham suggests reforms to health care that will ameliorate major issues of insurance coverage and overemphasis on curing, her proposals do little to address the social issues that she details so well.

References

Abraham L (1993). Mama Might be Better Off Dead: The Failure of Health Care in Urban America. Chicago: University of Chicago Press.

Evans G, Brooks-Gunn, J & Klebanov PK (2011). “Stressing Out the Poor: Chronic Physiological Stress and the Income-Achievement Gap.” Community Investments. 23(2): 22-27.

Gleason EL & Vigdor JL (2001). “Racial Segregation in the 2000 Census: Promising News”. Brookings Institute Reports. Survey Series: 1-11.

Sullivan L. (2016) “Reaching for the Moon: Enhancing Access to Careers in the Health Professions” Health Affairs. 35(8): 1532-1535.

Van Ryn M et al. (2011). "The Impact of Racism on Clinician Cognition, Behavior, and Clinical Decision Making.” Du Bois Review: Social Science Research on Race. 8(1): 199-218.

WHO (2017). Inheriting a sustainable world? Atlas on children’s health and the environment. Geneva: World Health Organization.

[Anna · Rating 4 out of 5]

Extremely eye opening book. There are a lot of things in this book that my parents and I just never experienced to this degree, and myself not at all because we had access to military health insurance from my father. This book sheds light on the fact that there are many policies that are failing to adequately cover many American citizens. This book ensures that you hear a little about what their day to day life is like and know about the hard choices that have to be made when you live in poverty. It also discusses those policies.

A bit dated in some aspects because of the publication date, but most certainly not all aspects and it still serves as a reminder of what our system is/was like, where it needs to be improved, what policies simply did not work for those it was might to help, and what groups of people are more likely to fall through the cracks.

[Nancy · Rating 5 out of 5]

This book is close to 30 years old, but it’s tale still holds true. More people may have insurance, but public insurance and programs are still confusing, care is still expensive, poor people are still sicker than average, poor people have less access to quality care, and black people are disproportionately at risk of falling into this system.

If you think access to quality care is a privilege and not a right, you need to read this book. And then read it again. And again. And again until you understand. It is not “those people” or “other people” it is your neighbors, coworkers, waiter, mechanic, grocery store clerk, housekeeper, kids’ substitute teachers, your fellow citizens, and it could be you someday.

[McCoy · Rating 3 out of 5]

Fascinating look at the many failures of our health care system seen through the eyes of one Chicago family. I learned a ton about Medicare and Medicaid and all the laws involved. As much as she tells an important story, the tone was both inflammatory and accusatory as if Abraham was confused about her audience. The take home: Stay at home caretakers are incredibly hardworking, resourceful individuals.

[Krista · Rating 4 out of 5]

Single-handedly started the process of me changing my mind on healthcare for those w/o insurance.

[Suzanne Kelly · Rating 4 out of 5]

Even though this book is outdated (1993) it still does a great job in providing empathy to those who struggle in our country. There is still much work to be done.

[This is V! · Rating 4 out of 5]

An interesting book about the failure of health care in the United States , this book talks about a black family living in Chicago suffering of kidney failures in the 1990s using Medicare .

[r ☁ · Rating 5 out of 5]

if you ever just want to bawl your eyes out. this is the one! ive never felt more sick to my stomach and frustrated by profit motives in healthcare. we do not care for our elders even a little bit.

[Jennifer · Rating 3 out of 5]

It’s so sad how so little has changed since this book has been written. The main changes that have been made were made under President Obama…yet we still lack guaranteed access to care for all.

“No one is forced to take responsibility for these inequities. Medical ethicist Larry Churchhill describes well the forces that allow the United States to remain the only industrialized country other than South Africa that does not provide at least basic healthcare to all of its citizens. “Access to healthcare is mostly contingent on having a way to pay for it either out of one’s own resources or with some form of insurance,” he writes. “The essential point is that [this] allocation by price is a rationing scheme——one which we have easily accepted healthcare as an extension of a basic economic philosophy, and one which largely observes any particular person for responsibility for the results. Since no one actually decided to exclude the poor (as it is their lack of money that excludes them, not our actions) no one is responsible and no one is to blame.”

“As I write this, it is not clear what changes await the US healthcare system. Some kind of reform seems imminent, but then again, national health insurance was just around the corner in the early 1970s. My background is a healthcare reporter does not equip me to lay out a detailed design for change, but after three years spent chronicling the lives of a sick, poor family and the institutions that served or failed to serve them, there is some a essential reforms that I think are necessary.
First, a basic level of healthcare —“basic” being defined by some sort of societal consensus— should be guaranteed all American doesn’t matter of course, as is the case in all industrialized nations other than South Africa. Only in America does it seem vaguely radical to declare that healthcare is not a luxury item like fancy cars or fur coats. It is inhumane to treat it as if it is. It also can be expensive. In the end, we cannot bear to let the poor die on the streets, so we care for them when they’re “damn near death,” as Tommy Markham would say, when it costs so much more. It also costs us in other ways, when Jackie and other poor mothers get job opportunities, they must weigh whether they can afford to leave welfare and lose the automatic Medicaid coverage for themselves and their children. Even the expansions in Medicaid leave out many of the children of working poor and near-poor parents, to say nothing of the parents themselves. As things stand now, we say to working for mothers and fathers: Medicaid may cover your youngest children, as long as your family doesn’t creep a dollar over the federal poverty level. You, however, the people who nurture them, you’re on your own.”

[Paul · Rating 3 out of 5]

That the US health system is dysfunctional in the extreme is well known and well discussed. It stands alone amongst wealthy nations in its cruelty and inequality, giving some of the world's best healthcare to, or even overtreating, the wealthy while denying basic necessities to those with less money and minorities (not to mention the female half of the population). What this book does well is show some of the human challenges and heartaches of those at the receiving end of this cruelty.

However, the book focuses almost exclusively on healthcare at the expense of many other structural issues which cause health problems and health inequalities. Tangential mention is made of housing, racism, access to healthy food, politics, gender inequality etc but passed over so briefly that it often appears that the problem is down to one problematic administrator, incompetent doctor or thoughtless piece of legislation. At best, the solution is seen to be more medicine - which is of course an important part of the solution but still a narrow part.

Despite the importance of the book lying in the personal experience of the Banes family as they navigate an uncaring system of medicine and social security, the best written chapter describes the dilemmas, failings and compromises of a devout and deeply caring Jewish doctor. Showing how somebody with the best of intentions and immense privilege struggles to provide for basic needs helps to show how the whole system is at fault.

It is a worthwhile read giving some really important parts of personal stories, but it's just a thin sliver of the story.

[Lori · Rating 2 out of 5]

Heavy On Statistical Data

I thought from the description that I would enjoy this book as it described several generations the Banes' family as they navigate their various health issues while living below the poverty line and trying to survive. Jackie Banes lives in a modest apartment along with her husband, their 3 children and her grandmother who is in poor health. The family members survive mostly off of welfare including Medicaid when they qualify for it, Medicare and social security as well as whatever money they may get from a poorly paid job.
Much of the book, as I indicated in my title focuses on the various statistics highlighting the inequities in healthcare between blacks and whites, private insurance vs Medicaid and Medicare and even the differences between hospitals in the Chicago area. It is clear that in North Lawndale, a very poor area where the Banese's family lives, nothing comes easy. They must pay 70.00 to get the grandmother transportation to her doctors appointments in a car equipped for her medical needs. The grandmother is a diabetic, an amputee, wheelchair bound and suffers from depression and bedsores. Jackie takes care of her as best as she can along with her husband and children but she is overwhelmed and herself at times.
I think the book seems well researched if dated. But I also found it to be quite dry and slow moving at times. I personally wouldn't recommend.

[Monica Willyard Moen · Rating 3 out of 5]

I can’t remember when I have read a book that is so insightful but also so heartbreaking and grindingly depressing. As a woman living below the poverty level, I can attest to the truth of much of what is in this book, though it focuses on the plight of black and Hispanic people rather than on poor whites and Asians. However, 90% of what I read here is true for people with physical or intellectual disabilities as well, regardless of race. Though this book is said in Chicago, most of it could have been set in another large city like Atlanta, Philadelphia, or New York City. Though this book was written before the affordable healthcare act, much of what it describes is still true. Beyond that, there are new limitations and difficulties that people living in poverty are facing now that much of the gains of the affordable care act have been lost.

[Karen Koppy · Rating 5 out of 5]

The author's research and writing style were excellent. The fact that this family represented the various medical inequities that still are present in our country is incredible - from elderly care, dialysis, preventative child and adult care, pharmaceuticals, rehabilitation, home medical assistance,
medical ethical decisions, to lack of understanding of varying racial attitudes toward the medical community. It captures exactly what was going on during the early 90's. All these problems still exist. While some improvements have been made, some problems have gotten even worse.
I wish someone would write an updated version of this book, with the same thoroughness that this author performed.

[Salvatore Daddario · Rating 4 out of 5]

I liked it!

(I actually didn’t finish. There are like 30 pages left, but I got everything I needed from it. I don’t have time to finish. Med school apps!!!!)

I think it’s a great read for someone looking to begin to understand just how confusing the medical system and insurance system are. This book has helped me hone exactly what I want my medical career to be, which is pretty cool. I want to educate people who need the education the most but that aren’t getting it. I am pretty sure that I want to serve underserved populations in medicine after reading this book.

Sigh, I guess this book is pretty important to me. I should probably finish it. Ok.

Thanks!
Bye.

[Fawkes Phoenix · Rating 3 out of 5]

Frustrating. Very frustrating for the family how doctors, nurses, social workers, the whole medical system failed them. I feel it is a good example of what healthcare once was. But I don’t feel like it’s completely true anymore. Yes things are still bad and disparities most definitely still exist and still torment poor minorities. But a lot has changed and gotten better with ACA.

I think we still have a long way to go tho.

Ps I had to read this baby for school. I was forced. But ima count it.

[chats · Rating 4 out of 5]

A devastating longitudinal look at the failures of the health-care system for a family on Chicago’s Southwest Side. Caveats: was written in 1993, so some of the specific policies may no longer apply. Also, I found the tone quite condescending in some places. It made me wonder how the Banes felt about this portrayal of their most painful moments, and how a book like this might read from a reporter that shared some of the same demographic identity.

[Kelly · Rating 4 out of 5]

a very very sad but very real look at the shortcomings of the american healthcare system and how the poor and sick fall through the cracks. the book itself is a little bit outdated in its discussion of insurance policy, but nevertheless many of the themes and struggles surrounding access are still prevalent.

overall, the book itself was very well organized and i felt that it was a fantastic, if depressing, look into the ways that healthcare failed the banes family on multiple levels.

[Steve Nolan · Rating 4 out of 5]

I think it was in the epilogue, but hearing how "nationalized healthcare was just around in the corner in the 1970s" was a kill of a kicker to a book written almost 30 years ago.

I think we might be getting closer, though. How anyone can read anything like this one book and not realize that's something that's been overdue in this goddamn country for far too long is beyond me.

[Katherine K · Rating 5 out of 5]

Even 25+ years later, the issues framed here hold true. The stats and specific policies may have changed slightly but the barriers and experiences of those navigating our uncoordinated system have not.

[Johanna · Rating 4 out of 5]

I originally was assigned this book for a social work in healthcare class but read another book instead. I picked it up a few years later-topic is wry interesting but writing is a bit dry. I would still recommend it

[LaDonna McGohan · Rating 3 out of 5]

Great information in the book, but just not well written. It’s like the author didn’t know how to filter out information, so just put everything in there. I was considering this for a health care policy class I teach, but the book is too dense with details and you can miss the overall goal.

[Cat · Rating 4 out of 5]

3.5/4

Originally written in 1993 but it's impressive how much things haven't actually changed in the past 30 years and how some things (dialysis chains, etc.) seem to be even muckier now than then