Mama Might Be Better Off Dead: The Failure of Health Care in Urban America
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Mama Might Be Better Off Dead: The Failure of Health Care in Urban America
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Product Details
| ISBN-13: | 9780226623702 |
|---|---|
| Publisher: | University of Chicago Press |
| Publication date: | 04/05/2019 |
| Edition description: | First Edition, Enlarged |
| Pages: | 304 |
| Sales rank: | 717,109 |
| Product dimensions: | 6.00(w) x 9.00(h) x 0.90(d) |
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CHAPTER 1
"Where crowded humanity suffers and sickens": The Banes family and their neighborhood
Robert Banes sat on the edge of his hospital bed, cradling his queasy stomach. A thin cotton gown hung on him like a sack. At five feet, eleven inches, Robert weighs only 137 pounds. Robert's kidneys stopped functioning when he was twenty-seven. He received a transplant a year later, but his body rejected the new kidney after six years. Since then he has required dialysis treatments three times a week. Dialysis clears his body of the poisonous impurities that healthy people eliminate by urinating, but the treatments cannot completely restore his health, and Robert periodically spends a couple of days in the hospital. This time, he had been admitted to the University of Illinois Hospital because he had been urinating blood for a week, a problem that did not appear terribly serious to doctors but nonetheless had to be checked.
Feeling nauseated, Robert was not paying much attention to the game show that droned from his television. A nurse came in and stuck a thermometer in his mouth. Earlier in the day, Robert had undergone a cystoscopy, a procedure in which doctors put a miniaturized scope into his bladder to look for the source of his bleeding. He had not been told the results of the test, so he asked the nurse when his doctor would be stopping by. He also wanted to know how much longer he would have to stay in the hospital.
"You may have to go to surgery," the nurse said vaguely, flipping through his chart. A cloud passed briefly over Robert's face; the thought of surgery scared him, though he did not admit that to the nurse. Instead, he changed the subject.
"I guess I don't get dinner today," he said.
"You didn't get dinner?" she asked, surprised.
"I need some before I get sick."
"Don't do that," the nurse muttered as she walked out the door.
A minute later Robert hurried to the bathroom. "I was probably throwing up because I didn't have no food to push it down," he said, referring to the missed dinner. Robert returned to his bed and lay down, curling his knees into his stomach and pulling a blanket over his shivering body.
Four years before his kidneys failed, Robert was diagnosed with focal glomerulosclerosis, a progressive scarring of the kidneys that eventually destroys them. Focal glomerulosclerosis can be slowed though not cured, but Robert's disease went at its own destructive pace because he did not get medical treatment until his kidneys had reached the point of no return. None of Robert's low-paying, short-term jobs had provided health insurance, and he could not wriggle into any of the narrow categories of government-sponsored insurance, which are generally reserved for very poor mothers and children, the elderly, and the permanently disabled. In other words, Robert had not been poor-parent enough, old enough, or sick enough to get care.
The game show gave way to the news and a report about a "summer virus" that was infecting children. Robert frowned. He and his wife, Jackie, have two daughters and a son: eleven-year-old Latrice, four-year-old DeMarest, and one-year-old Brianna. "Don't tell me that," he sighed. That is Robert's typical response to bad news: he prefers to avoid it.
At the moment, however, Robert would not have minded a little bad news about his own condition. Since he had been admitted to the hospital on July 5, he had not been urinating as much blood, which frustrated him and Jackie. They felt he almost had to prove to doctors that he was sick.
Through his open door, Robert could see his wife arrive for an early evening visit. At five feet, ten inches, Jackie is only one inch shorter than her husband, but she weighs twenty pounds more than he does. When she smiles, her pretty, heart-shaped face gets full and round, captivating her baby daughter, who pokes at her cheeks and giggles, making Jackie giggle, too.
Jackie was not smiling that day, however. When she is in public, Jackie can look impassive, even defiant, though this vanishes when her curiosity gets the better of her. She walked slowly past the nursing station looking straight ahead, moving almost regally, her muscular thighs curving beneath her slacks. Next to her husband's brittle frame, Jackie stood like an oak.
She pulled up a chair next to the hospital bed, and Robert began to relay the sketchy medical update he had heard from the nurse. Jackie listened silently; then she responded in the way she sometimes does when she feels overwhelmed.
"I'm going away for a while," Jackie said coolly. "What are you all going to do without me?"
Robert did not reply. He knew, as she did, that she wasn't going anywhere; she was just letting off steam. Today had been her day to pay the bills, which she does in person since they are usually past due, and she had ridden the bus for hours in 90degree heat.
Jackie told her husband to call home and tell Latrice to take some drumsticks out of the freezer for dinner. Jackie's invalid grandmother, with whom the family lives in one of Chicago's poorest neighborhoods, answered the phone, so Robert gave her the instructions instead. But a few minutes later Latrice called back because she was not sure her great-grandmother had heard the message correctly. In the way other children might memorize their parents' work numbers, Latrice had memorized the phone number for the university hospital, as well as for Mount Sinai Hospital Medical Center, where her great-grandmother frequently had been hospitalized. Jackie repeated the dinner instructions and hung up the phone. "I need the bed," she said.
She began to empty the stuffed grocery bag she had carried into the hospital. It contained two new T-shirts, underwear, and socks for Robert, a day-old piece of cake from Brianna's first birthday, which he had missed, a can of Sprite, and a bunch of grapes.
The couple watched part of another game show and talked about a report they had heard about a family found murdered mysteriously on the bottom of a lake. This story came from one of the tabloid news programs, whose bizarre stories the family regularly discusses. Then Jackie called home again to check on the children, who were home with her grandmother. The call was not reassuring: one of them had dropped cake on the rug, the other two had stepped in it, and DeMarest reportedly was taunting his great-grandmother.
"I need you to stay in here over the weekend so I can get things straightened out," Jackie wearily told her husband. When one or the other of her sick family members are hospitalized, Jackie sometimes considers it a chance to regroup, to get things together before she has to start taking care of everyone again.
Before Jackie left, she filled the plastic grocery bag she had emptied earlier. From Robert's belated dinner, she took a wedge of leftover chocolate cake home for DeMarest. She took packets of low-salt French dressing, salt, and sugar that Robert had squirreled away from his meal trays, as well as a roll of medical tape left by a nurse. Jackie carefully folded the foil Brianna's birthday cake had been wrapped in and stashed that in her bag, too.
Then she gave Robert $5.00 to pay for his hospital TV, which cost $3.25 a day. Robert slowly walked Jackie to the elevator, past a dimly lit room where the floor's patients congregated. One of the patients, a man about Robert's age, had earlier informed Robert that he was scheduled for a second transplant the next day. He told Robert that he had rejected his first transplanted kidney because he drank a case of beer in one evening — the kind of story that, true or not, flies back and forth among kidney transplant patients.
"This is my wife, Jackie," Robert said to a middle-aged woman sitting on the edge of the day room, closest to where the couple walked. "Nice to meet you," the woman said. Jackie smiled wanly, heading for the door.
The University of Illinois Hospital is part of what is known as the Illinois Medical Center, a 560-acre area just west of the Loop, Chicago's downtown. The center has the highest concentration of hospital beds in the United States, some 3,000 among its four institutions. In addition to the University of Illinois, there is Cook County Hospital, one of the best-known, last remaining, and, as the ancient edifice continues to crumble, most notorious public hospitals in the country, and Rush-Presbyterian-St. Luke's Medical Center, an institution that caters to those who, unlike Robert and Jackie, are privately insured. The Veterans Administration West Side Medical Center is also located there.
The medical and technological might of the complex contrast dramatically with the area around it. Just past the research buildings and acres of parking lots lie some of the sickest, most medically underserved neighborhoods in the city. Medical wastelands abut abundance in American cities because health care is treated as a commodity available to those who can afford it, rather than a public good, like education. Though public schools invariably are better in prosperous suburbs than in poor city neighborhoods, every state at least provides every child with a school to attend, no matter what her family's income. The country has not even come that far with health care. Medicaid, the state and federal health insurance program intended for the poor, covers less than half of them, and much of the program is left to the states' discretion, so that a Southerner, for example, generally has to be poorer to receive Medicaid than a Northerner.
Even for those poor who manage to squeeze into Medicaid, the government's commitment to providing health care for them does not approach a commitment to equality. Just as education remains in practice separate and unequal, medical treatment for poor people with Medicaid or even Medicare (the government insurance for the elderly) is, in all but exceptional cases, conducted in a separate, second-rate environment.
The Banes family lives in the shadow of the Illinois Medical Center complex, twenty-five minutes southwest by way of the number 37 bus, which runs along Ogden Avenue. The street cuts diagonally across the city from the gentrified lakefront neighborhoods just north of the Loop to the bungalow enclaves of white ethnic suburbs that border Chicago on the southwest. Jackie and Robert live in between, on the West Side, the city's newest and poorest ghetto.
The streets were still lit by the late afternoon sun when Jackie climbed onto the bus for her trip home. Settling her bag on her lap, she fretted that doctors were going to release Robert before they figured out what was wrong with him. A person can only get so far with a "green card," she said, using the street name for the cards issued to families covered by Medicaid. "You need Palmer Courtland kind of money to get anywhere," she complained. Palmer Courtland is a selfmade millionaire on "All My Children," a soap opera Jackie and Robert watch.
In addition to the hospitals and their services, programs in a clutch of other buildings near Ogden attempt to palliate what are often conditions born of poverty. There is the Illinois State Psychiatric Institute, the West Side Center for Disease Control, the Chicago Lighthouse for the Blind, and a bit further southwest, the Cook County Juvenile Court, which handles crimes by children, and those against them by their parents.
These buildings are strung along the Eisenhower Expressway, which zips from the booming Western suburbs into Chicago's downtown, whose dramatic growth in the past two decades has bypassed the West Side. Jackie rarely ventures into the Loop. From her perspective, the eight-lane highway is an escape route for the employees of the various hospitals and social service institutions, for people who do not carry poverty home with them in a plastic bag.
As Ogden turns more sharply to the west, it crosses into Jackie's neighborhood of North Lawndale, a name that carries the same ominous weight in Chicago as the South Bronx or Watts carry nationwide. North Lawndale was the subject of a series in the Chicago Tribune in 1985 that examined the lives of the so-called underclass. Many people who work and live in North Lawndale were disturbed by what they thought was a distorted, overly negative picture of their neighborhood; the series' very name, "The American Millstone," is hated because it suggests a neighborhood that is no more than a burden to be cast off.
Jackie had never heard of the Chicago Tribune series; she reads the Chicago Sun-Times, whose pithy city coverage is preferred by poor Chicago blacks. Yet many of her observations of the neighborhood could have served as grist for the millstone.
"My auntie's building got burnt down," Jackie said matter-off-actly one day, pointing to an empty lot where her Aunt Nancy's apartment building used to stand. "Drug dealers moved in." The narrow lot is two lots away from the stone three-flat where Jackie grew up with her grandmother. The building has survived, though its balcony has disappeared and graffiti circles its porch columns. It is just a half-block away from where the family lives today. Since she was eight, Jackie has only once moved from this block, and that was a short three miles north to live with Robert at his mother's house. Her dreams of a better life are circumscribed by the neighborhood. She talks about getting out, but out means a strip of stone and brick three-flats about four blocks west. "I've always liked it up in that area," she said. "It looks like the middle-class people lives up in there, especially during the summer. All the trees are green and everyone has grass. And the buildings look well kept. You can just tell it's homeowners." Her assessment is accurate — the homes are better tended — but it is hardly out of the neighborhood. The buildings there may be relative castles, but the moat protecting them from the drugs and violence that pervade North Lawndale is narrow enough to step across.
As the bus hissed and groaned up Ogden, it passed Mount Sinai Hospital, which lives the same hand-to-mouth existence as the poor blacks and Hispanics it serves. More than the University of Illinois, Mount Sinai is the Baneses' hospital. It is where Jackie's grandmother, Cora Jackson, had been repeatedly hospitalized because of complications from diabetes that eventually resulted in the amputation of her right leg. It's where Jackie's father was rushed after he suffered a stroke caused by high blood pressure. And on a happier note, it's where Jackie gave birth to Brianna a year ago.
At one time or another, the Baneses and Cora Jackson have sought (and not sought) health care in every way available to the poor. When uninsured — Robert, when his kidneys were deteriorating, and Jackie, when pregnant with Latrice — they delayed care, then went to Cook County Hospital. Later, when Jackie went on welfare, she and the children became eligible for Medicaid.
Meanwhile, some of Mrs. Jackson's medical bills were paid by Medicare, which covers the elderly and disabled, rich and poor alike. Robert also got Medicare but only after his kidneys stopped working. People with renal failure have special status under the program: they are the only group covered on the basis of their diagnosis and regardless of age or disability. Mrs. Jackson had been sporadically eligible for Medicaid, too, which she needed because Medicare does not pay for such important things as medications. Her Medicaid coverage had been fitful because she was enrolled in what is called the "spend-down" program. She qualified for Medicaid only during the months that her medical expenses were so high they forced her income to drop below a "medically needy" level set by the state. Notably, neither Mrs. Jackson, nor anyone else in the family, had ever been covered by private insurance.
Leaving Mount Sinai, the bus cut through Douglas Park, which spreads to the north and south of Ogden. Douglas and two other West Side parks were designed in 1870 as a system of "pleasure grounds" linked together by grand boulevards. Progressive reformers came to envision them as breathing spaces to provide respite from crowded tenements and other urban ills. In its heyday from 1910 until 1930, when North Lawndale was populated by first- and second-generation Jews, bands gave free concerts on weekends, couples paddled rowboats on the lagoon just to the north of Ogden Avenue, and children swam in what was one of the city's first public swimming pools — which, with its baths, was considered as important for public hygiene as it was for recreation.
Except for the players and fans at soccer and baseball games, the park these days is barely dotted with people, a young Hispanic couple walking on a path on the south side of Ogden — the Hispanic side — or several dozen black children splashing in the lagoon to the north — the African-American side. Ogden is a dividing line between Hispanics and African Americans in North Lawndale, and the race line holds in the park as firmly as it does anywhere else in the neighborhood.
(Continues…)
Excerpted from "Mama Might Be Better Off Dead"
by .
Copyright © 1993 The University of Chicago.
Excerpted by permission of The University of Chicago Press.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
Table of Contents
Foreword,
Preface,
Acknowledgments,
Introduction,
1. "Where crowded humanity suffers and sickens": The Banes family and their neighborhood,
2. The rigors of kidney dialysis for Robert Banes,
3. Gaps in government insurance for Mrs. Jackson,
4. Fitful primary care fails Mrs. Jackson,
5. Mrs. Jackson's melancholy,
6. The inner-city emergency room,
7. One hospital's story: How treating the poor is "bad" for business,
8. Who's responsible for Tommy Markham's health?,
9. Jackie Banes's "patient",
10. Empty promises: Preventive care for the Banes children,
11. Robert Banes plays the transplant game,
12. The Banes family and white doctors,
13. Life-sustaining technology,
14. Amazing grace,
Epilogue,
Appendix,
Notes,
What People are Saying About This
A provocative examination of our health care delivery for the poor. Such an honest and candid account is essential if we are to seriously explore a restructuring of the health care system.
—(Alex Kotlowitz, author of There Are No Children Here: The Story of Two Boys Growing up in the Other America)
