SOC 265- Mamma Might Be Better off Dead

How is Medicare biased toward "in-patient" psychological care?

After Mrs. Jackson lost her leg, she became greatly depressed. In addition, she never attended a support group because they were held in the mornings and - when she was at all able - the physical therapist preferred to see her early because she was stronger then. The infrequency of Mrs. Jackson sessions with Walsh is partially a reflection of the low priority rehab facilities in general put on psychological therapy. The rehabilitation Institute has two times the number of beds than Schwab, but almost 3 times the number of psychologists. Mrs. Jackson was released from Schwab and it may have been necessary: people who are mentally or physically unable to benefit from intensive rehabilitation should not be there. But once she got home, her despondency would never be effectively treated. She did not reach out for help, and meager insurance coverage and fragmentation of services kept help from pursuing her. Inpatient psychology may get relatively little attention at Schwab, but outpatient gets even less. Form follows funding, and even commercial insurers provide only minimal coverage for outpatient mental health services; public insurers are less generous. Medicaid, the health insurance program for the poor, does not cover any outpatient psychology in Illinois. Medicare pays for 80% of psychologist visits for hospitalized patients, but it pays for only half of outpatient visits, not enough for Schwab to cover the cost of providing the service, according to the institution's chief psychologist. Compared with physical illnesses, where outpatient visits are reimbursed the same 80% as inpatient visits, it seems that psychological visits do not have the same type of reimbursement. Medicare expenditure data reflect the bias towards inpatient mental health care. Hospitalizations account for 63% of Medicare expenditures overall but 88% mental health payments. For the most part, the only people who receive outpatient counseling from Schwab are those who have potential to return to work and may be covered under special grants from state department of Rehabilitation Services. So basically, if you are on Medicaid, tough luck. If you are on Medicare, you need to be hospitalized to receive more reimbursement for psychological visits. Also note the Home Psychare program at Mt. Sinai that was not offered to Mrs. Jackson. Why? "Offset effect," where use of outpatient counseling reduces the use of medical services. The savings have been found to be especially strong for the elderly, whose depressions often manifest themselves in physical illnesses that require hospitalization.

Why didn't Brianna get her measles vaccination?

After a deadly measles outbreak plagued Chicago, Brianna had been scheduled for a combined measles, mumps, and rubella immunization at Mount Sinai's pediatric clinic in October, but Jackie skipped that 15 month appointment - the first time she had ever missed one of Brianna's checkups. The shots would've been paid for by Medicaid, but Jackie simply was not thinking about potentially dire consequences of not getting Brianna immunized; measles can cause brain damage, deafness, and, of course, death. Additionally, Chicago's clinic's do not have a system to track children's immunization records and remind parents when shots are due. This is true even for children enrolled in comprehensive care, who supposedly get better service. So while it is safe to say that poor families may well need more encouragement to get their children to the doctor than their middle class counterparts, they in fact get less. Jackie's children were eligible for a Medicaid program called Early and Periodic Screening, Diagnosis, and Treatment, which is supposed to ensure that children get immunizations and other preventative care. But in many ways, it, too, has failed.

Why is the rehabilitation center that Mrs. Jackson goes to more profitable than the hospital?

After having her right foot amputated, Mrs. Jackson's health was very shaky. She had occasional bleeding that pained her and kept her from fully participating in physical therapy at the Schwab Rehabilitation Center. Sometimes, the bleeding was so bad that Mrs. Jackson oftentimes needed to go to the ER. However, this wasn't the best case scenario. Deciding whether someone is sick enough for a hospital is not a hard and fast science, but if it discharge to Schwab is at all possible, it makes financial sense for patients to be there instead of Mount Sinai. That's because of the way Medicare reimbursement is designed. Acute care hospitals like Mount Sinai get paid under the DRG system; they receive a set fee for each patient according to diagnosis, regardless of the length of the hospitalization. Rehabilitation centers, however, are still paid under the old method and roughly recoup the cost of care. Since Schwab and Mount Sinai are affiliates - they share board members and some top staff - the rehab center does what it can to keep the hospital afloat. Thus, it makes sense for hospitals to be done with Medicare patients quickly so that they can get new patients in. They aren't making any more money from longer Medicare patient stays. However, Rehabilitation centers DO make more money. - Later example of Mt. Sinai saying that they like to transfer Medicare Stroke patients to Schwab because most stroke patient often exceed the DRG allotted length of stay. By expediting the transfer to Schwab, or another appropriate facility, Mount Sinai's length of stay can be reduced, thus increasing the profitability of the hospital stay.

If you know anything about the new prescription drug law recently signed into law by President Bush, how would this law have helped Mrs. Jackson and her family?

Also known as Medicare Part D, the $400 billion Medicare Prescription Drug Modernization Act was created to provide much-needed help for the nation's 40 million senior citizens to buy medications; critics say it is a giveaway to drug makers and insurance companies and a prelude to the dismantling of the program. In addition to the prescription drug benefits, the measure provides billions of dollars in subsidies to insurance companies and health maintenance organizations, and takes the first step toward allowing private plans to compete with Medicare. It is the largest expansion of Medicare since the program was created in 1965, though most of its provisions won't take effect for several years. The drug benefit, for example, does not take effect until 2006. Before that, seniors will be able to purchase a discount card that could provide a 10 to 25 percent off prescription drugs. The law also allows the importation of drugs from Canada -- where many are cheaper -- but only if the Food and Drug Administration has approved the drugs. It also provides subsidies to private insurers to compete with traditional Medicare, giving seniors the opportunity to join managed-care plans, which typically cut costs by restricting patient access to specialists. That provision does not take effect until 2010. In 2006, Medicare recipients will pay $35 per month with a $250 deductible for prescriptions. The plan will pay 75 percent of costs up to $2,250. The prescription drug provision left out a proposed guideline the president had originally sought -- requiring seniors to join an HMO to be eligible for the benefit. Opponents of the legislation warned that seniors would demand that Congress revisit the issue once they realized what the bill does and does not do. High on the list of things not covered in the bill is a mechanism to stem rising prescription drug costs. Sen. Dianne Feinstein, D-California, who supported the bill, said the lapse was a "major weakness in this bill." According to the Washington Post in 2010, Four years into full operation, President George W. Bush's Medicare prescription drug program is coming in well below its projected cost, giving hope to backers of the new health insurance law that it, too, could beat budget expectations. The numbers are stark and conclusive: In 2009, the government spent $60.8 billion on the drug benefit, or far less than the annual $111.2 billion cost projected just five years ago, after the program was enacted. The lower cost - a result of slowing demand for prescription drugs, higher use of generic drugs and fewer people signing up - has surprised even some of the law's most pessimistic critics. ------ In the book, it is noted that at the time, Medicare did not pay for medications. For the Banes family, a month's worth of medication to control Mrs. Jackson's high blood pressure, diabetes, and other problems cost at least $75. Medicaid usually would pick up the tab, but Mrs. Jackson's coverage was too unpredictable for Jackie to depend on it, so she rationed medication for Mrs. Jackson. When Mrs. Jackson became hospitalized, then her medications were provided by the hospital, thus, Jackie relied on Mrs. Jackson's frequent hospital stays to keep drug costs down. Given the expansion of Medicare to include prescription drug coverage, Mrs. Jackson would not have had to "spend-down" to the medically needy level in order to qualify for Medicaid, which covers prescription drugs that Medicare doesn't cover. To get Medicaid without the spend down in 1989, single elderly and disabled people could not bring in more than $292 a month, what is known as the medically needy level in Illinois. On paper, Mrs. Jackson received $686 from Social Security each month, but she actually got only $619 because Medicare's $31.90 monthly premium was taken from her check has was a deduction for an overpayment she erroneously received in years past. Mrs. Jackson normally would not be eligible for Medicaid, since she did not fit any of categorical eligibility requirements, however, because she got Social Security Disability payments, it allowed her to get secondary insurance from Medicaid, provided her income was low enough. *I need to check my answers with others to verify this answer as correct.

Why do emergency rooms get used for routine care?

Any discussion of healthcare for the urban poor would be incomplete without an examination of the emergency room, where waits are long, doctors and patients are strangers, and continuity is nearly impossible. Yet poor patients continue to converge there for routine care, providing daily testament to the gaping holes in the broader health and social service system. The emergency room is where the inequities and distortions of the healthcare non-system - one driven more by patient's ability to pay than by their medical need - are most obvious. Book describes layout of Mt. Sinai emergency room, and the substandard conditions for treating patients. The emergency room's crowds have grown over the last couple of years, from about 32,000 patients treated in 1987 to 39,000 in 1990. Besides being one of the few remaining trauma centers in Illinois (others fled the network after citing heavy losses incurred from treating severely injured patients who tend to be uninsured or covered by Medicaid), the growth in emergency room traffic cannot be attributed only to trauma. It is as much the result of people who trudge through the doors with less serious complaints and drop down in hard plastic chairs to wait. Studies in Chicago and nationwide have shown that Medicaid recipients, who comprise 40% of the West Side's residents, are more likely to treat the emergency room as a doctor's office than the privately insured. Researchers at the University of Illinois recently reviewed almost 2000 emergency room visits by Medicaid clients at 20 large hospitals in the state and found that 58% were for what physician reviewers classified as non-urgent conditions. On the West Side alone, the Medicaid program could save $3 million if that non-urgent, primary care were given to its clients in doctors' offices rather than in emergency rooms. That's because extensive, expensive medical workouts are the norm in emergency rooms, where doctors are unfamiliar with patients and thus err on the side of caution. Why do Medicaid recipients prefer Mount Sinai's raucous emergency room when they presumably could go to a doctor's office for the same care? Because they would rather wait hours than weeks for an appointment; the scarce availability of decent physicians and public clinics located on the West Side means that it can take that long to get in. They prefer the emergency room because they do not trust storefront doctors who have chosen to practice in their neighborhood. Or they prefer it because old habits die hard, and these people gave up going anywhere other than the emergency room years ago. The emergency room is always open, after all. It cannot turn you away. Its doctors can't be too bad if a hospital hired them A variation on these themes explains why Mrs. Jackson, whose main insurer was Medicare, used the emergency room frequently. First, she had a primary care physician in name only. Jackie did not have any confidence that Dr. Gurevich would return her calls or answer her questions, so she took her grandmother to a place that she knew had to respond. And Chicago Fire Department ambulances, which Jackie learned to use as free transportation of last resort, do not take people to doctors' offices; they take them to emergency rooms. Another main point - for many uninsured patients that can't get Medicaid/Medicare, they may often be in advanced stages of treatable disease, with undiagnosed diabetes attacking their kidneys, or even breast tumors large enough to break through their skin. Their conditions certainly are emergencies now but emergencies that, once again, did not necessarily have to be. They got so sick waiting, waiting, waiting, because they had no health insurance and did not think they could afford a doctor until they really needed one. And even when things got bad enough that they really needed one, they still feared they could not afford it - who knows how expensive the doctor's visit will be? - So they stumble into the emergency room instead. There, the clerks ask if you have insurance but will not draw in their breath when you say you do not, will not ask you to wait while they confirm with someone else, will not, cannot, turn you away.

According to the author, what are the consequences of a "patchwork" system of coverage like the one in the United States?

Because the United States does not provide a basic level of healthcare to all it's citizens, the country is left with a patchwork of state and federal programs among which inconsistencies are inevitable. People are divided into groups and subgroups, and then divided again. Administrative costs consume up to 25% of America's healthcare spending (public and private), whereas they add up to no more than 11% in Canada. That country guarantees healthcare to all it citizens and it does not fritter away dollars determining who should get care and, more to the point, who should not.

Who is responsible for Tommy Markham's health?

Before a stroke left him partially paralyzed at age 48, Tommy smoked, drank heavily, and stopped taking high blood pressure medication because it made him impotent. Since the stroke, he has sworn off his worst habit, alcohol, but he still smokes, devours fried meats and other fatty food, and rarely exercises. At many hospital institutions,Tommy said he would do, could do, whatever doctors asked, but then he didn't. It would be easy to accuse Tommy of refusing to take responsibility for his help. Similarly, Mrs. Jackson could be blamed for getting so sick. I'll be accusations maybe true, it is also true that complying with health advice is harder for the poor and for the middle class, which has more choices. When an individual does not adopt healthy behaviors, it has potential to undermine any attempt at all to reform the healthcare system to benefit the poor. Because, after all, if these poor folks make themselves sick, why should we waste our efforts helping them out? If one of Tommy's problems is denial that he has one, it seems unfair to punish him for not doing everything he could to solve it. Or in another case, is it a voluntary choice when people who hold religious or folk beliefs that conflict with modern medicine do not follow doctors' advice? Tommy held similar folk beliefs about his hypertension, which doctor's did not adequately respond to. One can not point to a specific instance where we can say, this problem is Tommy's fault and this problem is the hospital's fault. A combination of faults is at play here. The system is keeping Tommy down, so that he does not have the freedom to make healthy lifestyle choices all the time. That said, Tommy does need to take more responsibility for his own health and adhere to doctor's recommendations whenever possible. Additionally, culturally sensitive doctors need to recognize the difficult type of patient with folk beliefs that Tommy is, and there need to be programs aimed to educate people like Tommy about his disease. Tommy's health was not pursued aggressively by hospitals, which might have stimulated him to keep staying adamant about his health choices. It's a team effort to restore one's health, and you are only as good as the weakest link.

Medicaid covers nursing home care for everyone who "spends down," and many middle-class people use this strategy successfully. Why then do many poor African-Americans have trouble getting into a nursing home?

Blacks fill fewer nursing home beds than whites mainly because they are more likely to be poor Medicaid recipients, and that group is no more lucrative for nursing homes than it is for hospitals and doctors. First neither commercial insurers nor Medicare pay for much nursing home care. Medicaid, however, covers anyone who needs custodial care, high skilled or not, as long as they're poor enough. It has become the nation's de facto long-term-care insurer, covering a whopping 45% of national nursing home costs. With nursing home rates running at least $30,000 a year, many people who enter them as members of the middle class eventually exhaust their savings and become eligible for Medicaid. Blacks' chances of being admitted to nursing homes are worse than whites because they are more likely to be poor from the start. And some nursing homes, especially the best ones, require potential residents to prove that they personally can afford to pay for at least one year of care - before reverting to the lower, slower paying Medicaid.

What is "demarketing"? How is it used? What are its consequences?

Demarketing was an unconventional tactic DENIED by Mount Sinai in the mid-1980's when it made a formal reaffirmation to serve the disadvantaged, including those on public aid and the uninsured, the elderly (the majority of whom are also disadvantaged), and the blue-collar workers, who included blacks, Hispanics, and ethnic Europeans. Demarketing techniques included intentionally creating long lines in emergency rooms, eliminating primary care clinics for the poor, and shunting nonpaying patients to waiting areas with "few seats, poor lighting, few signs, and no food or drinks." The point of demarketing was to discourage uninsured patients from using hospital services, allowing the hospital to generate revenue off the remaining private paying patients. However, Mount Sinai rejected that kind of strategy, and thus embarked on dozens of new ventures guaranteed to attract poor patients. Mount Sinai then stitched together a system of a dozen clinics in poor neighborhoods, mostly within 2 to 5 miles of the hospital. These clinics received federal qualification. To make these ventures possible, Mount Sinai jumped into the arms of state government and pursued every grant imaginable - and it distanced itself from other private non-for-profit hospitals.

How is Robert's dialysis paid for?

Dialysis is one of few areas of medical care dominated by for-profit providers, and it has been at the center of a nationwide debate about cost and quality of proprietary medicine. Medicare pays dialysis units of fixed fee for each dialysis session - Neomedica currently gets $131 per treatment but exercises little control over how that money is spent. Officials at the Health Care Financing Administration, which administers Medicare, charge that, to preserve high profit margins, many centers compromise patient care by reducing staff and shortening treatment times. Such cost-cutting changes have been made at Neomedica, Dr. Lang freely admits, but he said they do not threaten patient's health. Neither, he said, do Neomedica's physician owners earn excessive profits. That Medicare pays for dialysis for the 150,000 Americans who need it is unusual because the federal health insurance program primarily covers medical expenses of the elderly and disabled. Kidney failure is the only disease that makes people of all ages eligible for Medicare, through what is known as the End-stage Renal Disease program. But Medicare pays for only 80% of dialysis. At least part of the remaining 20% comes from one of three different sources: Medicaid, the government program for the poor; private insurance; or in Illinois, a special program sponsored by the state Department of Public Health that picks up patients who would otherwise fall between the cracks, those not poor enough to qualify for Medicaid but too poor to afford private insurance. The state program covers only hemophiliacs and dialysis patients, who are able to attract extra state dollars for one of the same reasons Congress voted to extend Medicare coverage to renal patients in 1972: death from kidney failure (as well as hemophilia) is both swift and certain. There is no net to catch borderline poverty level people who need medical treatment for chronic diseases such as cancer, whose progress is slower but just the fatal if left untreated. Robert and 13 other patients in his dialysis group are impoverished enough to be eligible for Medicaid. National estimates put half of the dialysis population below the poverty line.

Why did Mrs. Jackson sometimes miss appointments with her primary physician?

Example given with Dr. Gurevitch, Jackie watched the exchange between Dr. Gurevich and her grandmother carefully. After prodding at her dark toe, he looked at the sore on Mrs. Jackson's heel. He did not ask about her diabetes, or check the deepening, half dollar size bed sore on her buttocks, which Jackie brought to his attention. "Bring her back into weeks," he said. "Why can't we admit her today before it gets worse?" Jackie demanded. "We have to pay for the medi-car, and we might not be able to come back." Dr. Gurevich did not respond to Jackie's plea. Instead, he picked up the phone and rang Mrs. Jackson's podiatrist, Dr. Robert I. Steinberg. Then he called Mount Sinai's admitting office. When Jackie and Mrs. Jackson were able to be scheduled for the medicar - Jackie had inquired about scheduling all of her grandmother's doctors' appointments on the same day, but that did not fit the physicians' schedules. With Mrs. Jackson's name in the computer, the medi-car companies would transport her to Mount Sinai without requiring cash up front, as they trusted that Public Aid would pay the bill. Otherwise, Mrs. Jackson probably would've missed the appointment because Jackie could not spare $70 for the 2 mile round-trip ride to Mount Sinai. Basically, sometimes people just can't afford to drive to the doctor's office, and then there are also times when doctors can't schedule patients all in one day. This creates problems on both sides. Medicare didn't cover transportation unless it was deemed "medically necessary"

What reforms to the American health care system does the author recommend?

First, a basic level of healthcare - "basic" being defined by some sort of societal consensus - should be guaranteed to all Americans as a matter of course, as is the case in all industrialized nations other than South Africa. Author considers healthcare a basic right. Healthcare can also 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. In addition it also cost us in other ways; when Jackie and other poor mothers get job opportunities, they must wait whether they can afford to be welfare and lose the automatic Medicaid coverage for themselves and their children. Even the expansions and Medicaid leave out many of the children of working poor and near poor parents, to say nothing of the parents themselves. As of the time of this book, Medicaid may cover the youngest children if the parents do seek work, as long as the family doesn't creep a dollar over the federal poverty level. Second, although having Medicaid is marginally better than being uninsured, it should not continue in its present form. It probably would and should be eliminated if the country decided to guarantee some level of basic care to everyone, but if not, its payment rates must be brought in line with those of other healthcare payers. Otherwise Medicaid will continue to perpetuate inaccessible, inferior healthcare for the poor. Third, any health program that purports to care for the poor must do a better job of figuring out what basic services they need to cope with illness, and how to provide those services in a straightforward way. The poor need more than medical insurance. The American public seems unlikely to support expansions in access that are not accompanied by cost control. Conversely, any form of cost control seems unlikely to work without universal healthcare access. How can policymakers design plans to contain costs with cost shifting inexorably pushing up prices for the uninsured? The author supports the argument of medical ethicist Daniel Callahan. Our society needs to rethink its vision of healthcare and set some kind of global limits on public and private healthcare spending. He advocates shifting the emphasis of the healthcare system away from curing and towards "caring" of a kind of Baneses missed most. Caring, as Callahan conceives it, "requires institutions, accommodating social structures, and a society prepared to make room for those it cannot cure or return to "productive" life. For the dying, the need may be for that of institutional hospice, for a solid homecare program, for the kind of psychological and social counseling necessary to ease the passage from like to death - which may be true for the family as well as the dying person. For the functioning of the disabled, their families will need technical training and psychological counseling to understand how to do what they must do, and how to live with the enormous pressures that being a caretaker can entail. Thus, in chasing immortality by trying to cure diseases, we are starving the other institutions that could make life worth living. The author also agrees with Link and Phelan's definition of socioeconomic status at the root of all health problems - While casting drugs and violence in terms of public health may have its rhetorical benefits, the author believes it misses the essential point: that the virulence of these problems among the urban poor is born out of their lack of opportunity for the future, the joylessness of life in the ghettos. These tears in the social fabric the healthcare system cannot stitch. Unless we decide that we are going to spend so much on healthcare and no more - and making this decision stick depends on providing a guarantee of decent healthcare for all - the author fears, as Callahan does, that we will be left with neither the money nor the will to attack the nation's other, equally devastating epidemics. Basically, the author believes that we need a universal health care system before we can attack the healthcare problems caused by low socioeconomic status.

Why didn't Robert get treatment for his kidney condition before it became life threatening? (Again a more complex question than you might think.)

Four years before his kidneys failed, Robert was diagnosed with focal glomerulosclerosis, a progressive scarring of the kidneys that eventually destroys them. This disease 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 enough, old enough, or sick enough to get care. Why Robert waited until he was in such crisis to seek medical care is not entirely clear. In the medical record, a cook county social worker wrote that Robert told her that he didn't have any money to pay his hospital bill. None of his short term, minimum-wage jobs provided medical insurance to pay for diagnostic kidney studies, or medications, or follow-up visits to the doctor, and he was not consistently enrolled in Medicaid, which is very limited coverage for single adults, anyhow. Beyond Robert's inability to pay for his care is the fact he did not seem to understand the gravity of his illness, or that medical care could have extended the light of his kidneys. When patients come in to Cook County with chronic renal failure and say "nobody ever told me this could happen" they are partly right. Then, too, people who can barely afford food and shelter may not think they have much to gain from spending scarce dollars for doctors visits. It's also possible that friends and family were not pushing Robert to go to the doctor. People in Chicago's poor neighborhoods are used to a lot of sick people around.

According to the author, how does the American health care system compare to the systems of Canada and Great Britain?

Healthcare is not a prerogative of the affluent or well-insured in other countries, Canada and Great Britain being the most often cited examples. Their systems are designed differently, but both countries provide healthcare to all their citizens, at costs significantly below that of the United States, and with at least equal and often better health outcomes that are achieved here. And though a small percentage of the British have supplementary private health insurance (which is a legal in Canada), by and large, when tough choices need to be made, the apply to all, like a draft without loopholes for the sons of the powerful. For all the limitations that might be found in the national health service, the British have embraced equity as a basic organizing principle, have accepted the reality that not all that can be done technically can be done financially, and have invited their basic values and institutions that routinely make binding choices that affect the country citizens. A respected Canadian physician, Dr. Samuel Freedman, said the principle that the same amount and quality of medical care should be available to all has become a transforming national value in this country. "Knowing that everybody gets the same care helps to hold a society together," he said. "It makes everybody feel equally valued."

How are emergency rooms like the one the Banes family uses funded?

Hospitals rose in importance through the first half of the century as doctors demanded their own well-equipped, private "workshops" where they could practice as they saw fit. Organized medicine, later joined by the leaders of the many private hospitals that sprung up around the country, strenuously resisted government interference, including attempts by a handful of reformers to make public hospitals anything more than institutions of last resort. Third-party payers such as Blue Cross and Blue Shield, commercial insurers, and, eventually, the government's own Medicare and Medicaid programs helped hospitals prosper by reimbursing them for whatever test or treatments doctors deemed necessary. The funding gush only came to an end in the 1980s, as the payers who had once been so generous moved to staunch the hemorrhage of healthcare dollars, though the system they helped create remains. Yet always excluded from this comfortable arrangement were public hospitals and some inner-city private ones like Mount Sinai, which never developed predictable sources of support from either benefactors or the government.

Jackie had the chance to be paid for caring for her mother. Why didn't she sign up for it?

If Jackie completed a 12 hour class, she could earn about four dollars an hour for the 20 hours of care that had been authorized for her grandmother. At first Jackie was intrigued, but she worried that if she lost her welfare Grant, AFDC, her children would no longer get Medicaid. Few employers provide health insurance for part-time workers, and in low-paying industries such as homecare, even full-time employees often do not receive health benefits. No one knows how many women stay on welfare primarily to retain Medicaid coverage, but policy experts say that stories like Jackie's suggest that the group may be quite large. The reasons Jackie chose not to become a homemaker for her grandmother - low pay, no health benefits - account for the rapid turnover in the industry as a whole. There was still one other program that could've helped Jackie, but she did not understand that it would've been free, paid for by Medicare. Again, Medicare does not pay for long-term custodial or nursing home care, but in a limited number of situations, the federal program will pay for home health aides, who perform many of the same tasks as Department on Aging homemakers, such as bathing, dressing, changing bandages, and preparing light meals. Medicare only covers home health aides when patients are sick enough to require visits from home nurse, a category that included Mrs. Jackson. Mount Sinai's home health agency offered this to Jackie, but Jackie assumed that someone who performed the same tasks as the Staff Builders' homemaker would cost the same 110 dollars a month.

Why do some blacks distrust white doctors? Why does Tommy Markham distrust his doctor?

Impoverished black women are not, of course, the only people who complain about being befuddled by doctors. All classes and races of people often perceive doctors as aloof technocrats who confuse patients with scientific jargon rather than engage them in a meaningful give and take about their prognosis and treatment. The gulf between physicians and patients can be attributed to a host of structural changes in the practice of medicine: the end of the house call; the extreme specialization of medicine so that doctors follow patients only as long as a particular organ system malfunctions; demographic changes such as those that eliminated the ethnic and religious bonds between Mount Sinai's doctors and patients; technological advances that make tests better diagnostic instruments than conversations with the patients; and, finally, the rigorous, lengthy medical training mentioned earlier. At teaching hospitals, not only do more clinical trials take place, but, as Mrs. Jackson found out at Mount Sinai, patients are subjected each day to the poking and prodding of as many as a half dozen different doctors in training. And finally, in a medical system based on ability to pay, those who have the ability to pay least, the uninsured and Medicaid patients, cannot help but doubt the care they receive. The perception and the reality of second-class care - including unwanted, experimental care - inescapably stain and strain relationships between medical professionals and poor blacks. To a degree that confounds many whites, blacks sometimes worry that they could become unwitting subjects in dangerous human experiments. For example, hospital records show that Tommy's abdomen was opened up to find the source of persistent abdominal pain that he had developed after his stroke. There is a consent form for the exploratory laparotomy in Tommy's medical record, which he "signed" in indecipherable scribble. Tommy's awareness of human experimentation came from direct observation. During his incarceration, he worked as a janitor at the Stateville prison hospital. He saw prisoners being infected with malaria to test new drugs. Tommy would let the mosquitoes take blood meals on his arms. Often times, by working on projects such as these, it increased one's chances of getting out of prison. Nuremberg Code - written after World War II, this document said voluntary consent could only be obtained from subjects "so situated as to be able to exercise free power of choice." Tuskegee Syphilis Study - conducted by the US Public Health service, the study involved 400 Southern Black men who, for 40 years, from 1932 to 1972, were not told they had syphilis and were not treated for it so that researchers might discover the "natural history" of the disease. The "endpoint" of the study, according to its architects, was death, at which point the men were autopsied to see what havoc the disease had wrought on their internal organs. Informed only that they were being treated for "bad blood" - a southern euphemism for a host of sicknesses - the men were never warned that they could pass the disease to their sex partners or unborn children. It is argued that the black community's reluctance to acknowledge AIDS in its midst is perhaps the most tragic result of the mistrust generated by Tuskegee, as well as other abuses of medical authority. Dilantin Experiment - in the spring of 1988, the Chicago Defender, the city's largest black newspaper, revealed that 240 pregnant women - mostly black or Hispanic - had participated in an experiment at Cook County Hospital without their consent.

Why did whites in Illinois receive transplants at higher rates than blacks?

In addition to economic factors hitting Lawndale blacks hard, genetic factors also complicated their abilities to receive transplants. In 1988, 63% of the whites on transplant waiting lists in Illinois received kidneys, compared to 36% of blacks. A report issued in 1990 by the Office of the Inspector General of the Department of Health and Human Services found that blacks nationwide waited an average of 13.9 months for a kidney, nearly twice as long as whites. Transplant professionals often blame the longer waits on the different biological makeups of blacks and whites, combined with the fact that whites donate more organs than blacks. The two races tend to have different blood types (more blacks than whites are blood type B, for example), and black supposedly are "highly sensitized" more often than whites, which means their antibodies repel more donor organs. In addition, genetic compatibility is weaker between the races then within them. Also members of the transplant community maintain that biology explains whites' advantage, the issue is far from settled. A report found that even when blacks and whites had the same blood type and the same level of sensitization, blacks still waited longer for kidneys than whites. Matching systems such as UNOS (United Network for Organ Sharing) and ROBI (Regional Organ Bank of Illinois) distributes organs based on wait time and genetic compatibility, which discriminates against blacks. People complained that matching wasn't affected by lifestyle choice, so a genetic compatible white who broke all the rules would receive things over a genetically incompatible black who led a good lifestyle.

What is Medicaid? What is Medicare? How do they differ? Who in the family uses which program?

Medicaid - The state and federal health care program for the poor. Has never lived up to its promise to eliminate the country's two-tiered system of health care. Medicaid income restrictions are so tight that the program covers less than half of the poor, defined as those Americans who fall under the federal poverty level. Most of the working poor were and still are excluded from Medicaid and thus are uninsured, although some of their children are being progressively added to the program under reforms that began in the late 1980s. Those who managed to get Medicaid have struggled to find decent doctors. Medicaid pays physicians well below the rates of commercial insurers, and doctors perceive the poor as "difficult" patients, sometimes with reason. Poor patients' ailments are made worse by delays in getting care, and they show up at doctors' offices with more of what physicians call "sociomas", social problems that range from not having a ride to the doctors office, to drug addiction, homelessness, and to the despair that accompanies miserable life circumstances. As for the physicians who do practice in poor neighborhoods, they may be there only because they are not good enough to work anywhere else. Poor families usually have no way of knowing whether local doctors are up to snuff, even when they have been disciplined by state medical regulators. Medicaid is administered by the state welfare department and sponsors its own program to promote immunizations and preventative care for children, but it does so poorly. Medicare - Medicare is an entitlement program that covers most Americans who are older than 65 and certain disabled people. Because Medicare is an entitlement, the federal government cannot cut people from the program willy-nilly. Medicare still pays much better than Medicaid, and it's lower rates have not seriously curtailed the elderly's access to city doctors and hospitals. What bedevils the poor, are Medicare's gaps - it does not pay for medication, for transportation, for many basics (like adult diapers) that may sound wholly affordable to those with generous pensions or insurance to supplement Medicare. But such essentials strap the poor, who often end up going without. One of the reasons why Medicare and Medicaid are not the best is because with Medicare and Medicaid paying at cost and below, hospitals have come to rely on a perverse system of cost shifting: that is, covering the cost of uninsured, Medicaid, and Medicare patients by charging the privately insured higher and higher rates, which in turn increases the premiums employers and workers pay and contributes to the middle-class healthcare squeeze. The author contrasts schools with Medicare and Medicaid. Medical wastelands abut abundance in American cities because healthcare 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 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. Medicaid covers medicars, but without the spend down approval, Jackie faced the prospect of coming up with $70 for the round trip to Mount Sinai, about a mile away. Medicare, of course, pays for 80% of Mrs. Jackson's doctors' bills, but it does not pay to get her to their offices. Again, Medicare covers only "medically necessary" transportation, nonemergency trips the doctors office do not count. Thus, this is why Mrs. Jackson used ambulances rather than driving services when she really needed a ride, she would also sometimes exaggerate her condition to get the ambulance. Family Members - Notably, neither Miss Jackson, nor anyone else in the family, had ever been covered by private insurance. Cora Jackson-Grandmother to Jackie - some of Mrs. Jackson's medical bills were paid by Medicare, which covers the elderly and disabled, rich and poor alike. Miss 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. Tommy Markham-Cora Jackson's son and Jackie's father Jackie Robert - Jackie's husband - 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.

What kinds of medical care aren't paid by Medicare? If Medicare won't pay for Mrs. Jackson's care, where can she get coverage?

Medicare pays for Miss Jackson's home health services and virtually all of her hospital costs, after she pays a $560 annual hospital deductible. For a $31.90 monthly premium, it also pays for 80% of her doctors' bills. The $7428 annual income she receives from Social Security puts her about $1400 over the federally defined poverty level, and so she does not qualify for a program Congress created in 1988 to exempt the poor elderly from Medicare's deductibles and copayments. Ironically, even if Miss Jackson was poor enough, chances are she would still be paying those expenses out of pocket. A study conducted by a Senior Citizens Advocacy Group concluded that about half of the 4 million poor elderly thought to be eligible for the extra benefit were not receiving it. That is because it is up to the elderly to apply for the program, and the agency that administers Medicare, the health care financing administration, said it could not afford to identify and contact everyone who might be eligible. Deductibles and copayments beside, Medicare does not cover many things that Mrs. Jackson and other chronically ill people need, such as medications, transportation to doctors appointments, and, as was the issue this day, adult diapers. According to HCFA rules, Medicare covers only services or supplies that are "medically necessary". Adult diapers are not, according to an official at HCFA's regional office in Chicago. They are mainly a convenience, they said. Many devices or supplies that can prevent disease and disability from worsening are not covered by Medicare because it's reimbursement criteria emphasize curing acute conditions rather than maintaining health or improving daily functioning, a policy that may be penny-wise but pound foolish. Adult diapers, for instance, can prevent bed sores, as well as allow people to get out of their homes. Another example of shortsightedness, criticizing a report by the Institute of Medicine, a health policy group based in Washington DC, was Medicare's denial of coverage for grab bars in bathrooms. They are considered convenience items, although bathroom falls are leading cause of hip fractures and other often devastating injuries among the elderly. Elderly people more affluent to Mrs. Jackson do not have to worry about coming up with $45 for a box of diapers. They also often retire with supplementary health insurance provided by their employers, or by "Medigap "insurance, special policies that pay for some of the care Medicare doesn't cover. Even if Mrs. Jackson could afford Medigap insurance, her "pre-existing" medical conditions probably would preclude her getting such commercial coverage, which she has never had in her life. The closest Mrs. Jackson came to a Medigap insurer, in the months she qualified, was Medicaid.

Why was it important for Mrs. Jackson to be considered "disabled"?

Mrs. Jackson illegally enhanced her income when her boyfriend died. At work, Mrs. Jackson used another name, Cora Stone, with another social security number, which Jackie guessed her grandmother obtained which first moved to Chicago in the early 1960s. Sometimes she payed taxes under this name, and sometimes she didn't have to worry about taxes because her jobs paid cash, such as a job at the truck stop. This way, she was able to collect about $200 a month in Social Security disability benefits that she was awarded in 1971 on the basis of high blood pressure and arthritis (conditions that plagued her before diabetes became a serious problem). Cora Jackson knew that her money would've been threatened had Social Security known she was working. Mrs. Jackson illegally obtained a marriage certificate to a man who she had been with who died of a burn at Cook County hospital. Social Security accepted the evidently bogus marriage certificate and Cora took the last name Jackson. When she turned 65 in1985, she began to receive widow's benefits from Social Security (Mr. Jackson's retirement income). That's when her official income jumped from $250 a month and disability payments to more than $600. (This is illegal since she was illegally married to this man and assuming his finances) From a middle-class point of view, Mrs. Jackson's finagling yielded very little extra income. If she had not work and only collected disability, she and her granddaughter would've been forced to live on $200 a month. She was entitled to the disability payments: the Social Security administration had investigated her case and declared her disabled because of her arthritis and high blood pressure. But as Robert knows, that entitlement ends if disabled people managed to work and earn more than about $300 a month. Then disability payments are cut off, on the assumption that if people can work it all they're not, by definition, disabled. Thus Mrs. Jackson's solution was to work under an assumed falsified name, earning another $500 a month and enabling her and Jackie to live more comfortably, though their annual income always hovered around the poverty level. When Mrs. Jackson decided to retire at 65, she relied on her deceased husband's Social Security retirement payments to replace her lost income. By declaring herself disabled Mrs. Jackson received 200 extra dollars a month and received medical insurance. Two years after people begin receiving Social Security disability payments, they are eligible for Medicare, as well as for secondary insurance for Medicaid, providing their incomes are low enough. If Mrs. Jackson had not sought disability, she would not of had health insurance until she turned 65 and became eligible for Medicare. None of her minimum-wage jobs provided insurance. As a working age single adult she could not receive Medicaid because she did not fall into any of the right groups. There are a series of gates the poor must pass through to receive Medicaid, the first being "categorical eligibility". The categories of people covered were, and for the most part still are: single parents (grandparents raising their grandchildren usually don't count), children of single parents, and the aged, blind, or disabled.

Why isn't most Medicaid money spent on poor children? To whom does it go?

The real frustration is that poor women and children are relatively cheap groups the cover. Nationwide, children make up half of Medicaid recipients but account for only a fifth of expenditures. In contrast, the elderly and disabled comprised 27% of Medicaid recipients but are responsible for 73% of expenditures. A large part of that money goes for nursing home care. As mentioned, while Medicaid was intended to provide healthcare to poor women and children, the middle-class elderly take advantage of its nursing home coverage as much as anyone. Nursing home cost truly impoverished so middle-class people, the others have become adept at Medicaid "estate planning" using various legal maneuvers to qualify for the public program with actually becoming poor.

Why was Mrs. Jackson's home care so limited?

Mrs. Jackson was unfortunate to require home care at the tail end of the conservative era in the home health industry. Agencies that were once quick to provide services had become wary of taking on Medicare clients. The chill came about because of the marked increase in Medicare's denial of home health claims, a trend spurred by 1984 congressional legislation intended to curb fraud and abuse in the home health industry. Medicare refused to pay home health bills on many grounds: services were not medically necessary, too frequent, or exceeded medical treatment plans. Even though Mrs. Jackson might have benefited from more therapy, the home health agency had to consider the possibility that Medicare might not pay for it because Mrs. Jackson's chances for substantial improvement were slim. Medicare restrictions aside, overworked home nurses sometimes simply forgot to request physical therapy for their patients.

What is a "Medicaid spend-down"?

Mrs. Jackson's spend-down is akin to a deductible, a set amount of money she must spend every month on medical needs before Medicaid kicks in. To get Medicaid without the spend down in 1989, single elderly and disabled people could not bring in more than $292 a month, what is known as the medically needy level in Illinois. On paper, Mrs. Jackson received $686 from Social Security each month, but she actually got only $619 because Medicare's $31.90 monthly premium was taken from her check has was a deduction for an overpayment she erroneously received in years past. Mrs. Jackson is one of nearly 26,000 age, blind, and disabled Illinois residents who participated in the stand-down program. They have less than $2000 in assets, another requirement for the program, but their incomes are too high to qualify for Medicaid without a spend-down. That does not mean that 26,000 people actually are covered by Medicaid at any one time. It just means that they could get green cards if they met their spend-downs; the Department of Public Aid says it has no statistics on the number of people who do so regularly. The program was designed with good intentions: provide some relief for people with medical costs that dwarfed their incomes. But its strict income limits, as well as its cumbersome rules, made it a headache for people who are chronically ill. Its inherent erratic nature runs counter to a basic tenet of good primary healthcare: detect small problems quickly and treat them regularly so they do not balloon into serious illnesses that are more debilitating, and far more costly. It was Jackie's responsibility to gather medical bills or receipts month by month and take them to the local public aid office, a chore she understandably did not enjoy, especially since she felt like she was dumping the bills into a vacuum. People become eligible for a green card on the day of the month that their medical bills and receipts show they have met their spend-down. If Mrs. Jackson meets her spend down on the 20th of the month, she qualifies that day for the rest of the month. So 10 days after she becomes eligible, her coverage expires. As Jackie says, "By the time I get the card, it's time to do it again."

What are "DRG's"? How do they affect the care given to Mrs. Jackson?

Nurses, physical therapists, and other health professionals who visit sick people in their homes have become more important because of changes in federal health care financing for the elderly over the past decade. Congress liberalized coverage of home healthcare services under Medicare in 1980. The change eliminated the 100 day annual limit on home health visits, as well as a requirement that patients be hospitalized for at least three days before qualifying for home care. A more well-known change that increased the use of home health services was Medicare's introduction of DRGs, or diagnosis related groups, in 1983. In an attempt to control costs, Medicare began to pay hospitals predetermined rates for patients, depending on their diagnoses. Since hospitals receive a set amount for patients regardless of the cost of care, they have an incentive to discharge patients as soon as possible. The result is that patients who might of spent a few extra days in the hospital recuperating are now discharged "sicker and quicker" and need care from home nurse. It also means that families are left with the responsibility of caring for more seriously ill relatives, a burden that falls heaviest on poor families like Jackie's with few resources to draw upon. Despite the growth in Medicare reimbursement for home health services - a 24% annual rate of increase from 1974 to 1986, expenditures still are mostly for acute, hospital-based care. The $2.5 billion Medicare spent on homecare in 1989 accounted for only 2.7% of the agencies total expenditures.

Why is Mt. Sinai Hospital in such bad financial shape? How has it survived?

One reason Mount Sinai got into such bad shape can be found in the congressional legislation that created Medicare and Medicaid in 1965. It required hospitals be paid at cost for providing care to the elderly and poor, with no cushion for bad debt or other overhead expenses. Such a reimbursement scheme was feasible for hospitals in middle class and well-to-do areas. These institutions could raise the prices of commercially insured patients to subsidize the care of the small numbers of uninsured or publicly insured patients they treated. A hospital such as Mount Sinai had fewer private shoulders to carry the load of charity care and more of that burden to bear. In 1973, for example, fewer than 20% of the hospital's patients were commercially insured; more than 40% were covered by Medicaid. As has happened in large cities across the country, four Chicago institutions fled the network during the late 1980s, citing heavy losses incurred from treating severely injured patients who tend to be uninsured or covered by Medicaid. Though few hospitals expect to make money from trauma, they hope that the special designation enhances their reputations, pulling in top doctors and private paying patients. Mount Sinai Hospital's location precludes it from taking advantage of those indirect benefits, but the hospital is trying to hang on, despite losses of approximately $4700 per trauma case, a figure comparable to the other trauma centers in the city. In 1989, the hospital lost $2.2 million on the 466 level I (most seriously injured) trauma patients deposited at its doors. Unlike Mount Sinai, more and more city hospitals have chosen to close money-losing operations like trauma centers, or shut their doors altogether. Mount Sinai has survived not by working through the healthcare system, which is set up to reward hospitals the treat people with good insurance, but by working around it. In the 1980s, Mount Sinai became one of perhaps the most community service oriented institutions in Chicago, while Michael Reese could never quite reconcile itself to becoming something closer to what its location and the assimilation of Jews eventually dictated - a community Hospital for poor blacks. As Jews moved out of Chicago's west side, blacks moved in. Mount Sinai faced tensions between the commitment to serve the poor and the desire to court wealthier patients to fund the scientific armamentarium - which persisted in some form for three decades as it did at hundreds of other nonprofit hospitals nationwide. Running parallel the debate about whether Mount Sinai's predominant mission was charity or medical progress was a second debate over serving Jews versus blacks. How could a hospital favor Jews without discriminating against other groups? The question became relevant by 1960, as Jews no longer lived in Lawndale; by 1980, virtually the only Jews who traveled to the hospital or staff members and newly arrived Russian Jewish immigrants. Why should a Jewish hospital, supported by Jewish money, stay in a community that is mostly black? Mount Sinai tried partnering with various organizations, such as Michael Reese, in order to stay afloat - and it considered moving out of the community. However, after the black Civil Rights riots, many businesses/whites/middle class blacks fled the areas. Mount Sinai made a "bold, irrevocable decision: it chose to stay, to continue to provide private healthcare to the medically underserved and to improve the community environment." Depending on whom you talk to, Mount Sinai settled on the west side as its permanent home in 1967 when ground was broken for the Olin-Sang building, in 1974 when a potential land deal on the North side fell through, or in the late 1970s when certificate-of-need laws began to be enforced. Whatever the precise date, Mount Sinai has remained on the West side in presence, but not always in spirit. Mount Sinai's business - tending and mending the poor - is unprofitable business. Anyone with a glancing knowledge of medical care knows that hospitals today look more like businesses and less like charities than ever before. That trend accelerated in the 1970s when not-for-profit hospitals looked around and saw that for-profits were making no pretense towards charity and were stealing their patients. The not for profits reaction was to act more like their competitors, and Mount Sinai was no exception. Faced with these challenges, in the early 1970s, Mount Sinai took a deep breath, and it did most hospitals were doing: it tried to draw paying patients. Throughout that decade and well into the next, Mount Sinai worked to shift its "patient mix," or replace patients who are uninsured or covered by Medicaid with those who had commercial insurance. In addition, Mount Sinai also began some of the more creative, substantial ventures to rebuild the local community - like working with the city to demolish several dangerous abandoned buildings on Ogden and repair the street. Then, in the mid-1980s, the hospital gave up trying to lure privately insured patients. Instead, Mount Sinai concentrated on becoming an almost entirely public private hospital, so enmeshed in government programs that state and city bureaucrats and politicians would go to some lengths to prevent its demise. To boost physicians' incomes and curtail the hospital's losses, Mount Sinai closed its outpatient clinics in 1972 and reorganized the Chicago medical school faculty into private group practices. These "private" clinics would not treat anyone without third-party coverage - except for emergency cases and Jews, who can never be turned away under hospital policy. Like many other hospitals, Mt. Sinai began diverting uninsured patients to Cook County. Later Mount Sinai also nagged the Illinois Department of Public Aid, which had frozen rates on Medicaid patients. Both strategies - bringing in private paying patients and nagging public aid - worked for a time. After being beaten down further in the 1980's by medical inflation and the DRG system introduction, Mount Sinai again made an unconventional approach to market to the POOR and UNINSURED. It created clinics in poor neighborhoods within 2-5 miles of the hospitals, some in high schools. These clinics eventually received federal qualification and could be reimbursed more. To make its embrace of Lawndale's destitute possible, Mount Sinai jumped into the arms of state government. The hospital pursued nearly every special state government grant or project that came along. They introduced the symbol of the anchor. This reconfirmation garnered support from foundations and corporations, money that was essential if the hospital's facilities and equipment were not to become hopelessly outdated. Mount Sinai depends on corporate and foundation grants partly because it still does not get many large donations from Jewish philanthropists. Comparisons to Rush, which thrived. Why did Rush thrive? Only by constantly updating its facilities, acquiring new technology, and hiring the biggest names in medicine, can a hospital such as Rush, which is also on the West side - about 3 miles from the Baneses' apartment - hope to attract a significant number of commercially insured patients.

What is "the original sin of American health policy"?

Paul Starr, calls Congress's decision to link Medicaid to welfare and Medicare to Social Security "the original sin of American health policy". "Medicare enjoys the political protection created by a span of eligibility that includes the middle class; Medicaid suffers from the political vulnerability created by identification with welfare and the poor." The hospital benefits of Medicare are additionally protected by financing that comes from your Marc payroll tax, whereas Medicaid must compete for general revenues - at not only the federal but the state level. Social stigma of being identified as poor welfare person with Medicaid. Medicare and Medicaid are linked to different sources of financing, with Medicare's being more stable than Medicaid.

Imagine Mrs. Jackson as an upper-class retiree, maybe a retired Wellesley professor. How do you think her medical story might be different? If you had to explain the poor outcomes of Mrs. Jackson's medical treatments, how would you do it? (To what extent is Mrs. Jackson herself responsible?)

Regarding her diabetes, some studies have shown that the disease, which prevents the body from using glucose properly, is more common among poor, less educated Americans, but when researchers control for obesity and age, the importance of socio-economic factors diminishes. While poverty and the fragmented primary care system that accompanies it may not explain what Blacks get diabetes more often, it may explain why they suffer such serious complications. The amputation rate among blacks is twice as high as among whites; diabetes related kidney failure is three times as frequent, and black women are three times as likely to be blinded by the condition. Despite many similarities in the reasons that rich and poor elderly are hospitalized, diabetes and other chronic diseases stand out as exceptions. In poor areas, diabetes ranks as the six most common reason for admission, whereas it barely makes the top 20 in neighborhoods where less than 10% of the population is poor. The report concluded that although Medicare puts rich and poor elderly on more equal footing than younger people who do not have the benefit of government-sponsored insurance, disparities in access and ability to make the dietary and lifestyle changes necessary to manage the disease persist. Since Medicare does not cover medications, poor diabetics with erratic secondary insurance, or none at all, may not be able to afford the drugs and equipment necessary to control the disease. Assuming Mrs. Jackson is now a middle-class black woman, she would most likely have a car, and not have to worry about securing a medicar or calling an ambulance for last minute crises. She would now be able to visit a private practice office to see a physician regarding her condition, where the care is consistent and personal - and the medical records are consistent and correct. She might also have a better private insurance plan as well. She would also have the ability to finance changes to her diet and lifestyle to accommodate treatment for her diabetes, possibly allowing her to avoid amputation.

If Medicare serves everyone over 65, why do minorities and the poor seem to get worse care? (Again, a complicated question.)

Some of the most fundamental deficiencies and Mrs. Jackson's care can only be found by going back to this time, to the events that led to the amputation of her right leg in April, and even further back, to the years when she left the basic care necessary to prevent decrypting complications of diabetes. There, little support can be found for the notion that Medicare pressures the same quality and quantity of care to the middle class and poor elderly. The episodic, uncoordinated nature of Mrs. Jackson's treatment conspired against her health, until, as Jackie would say, "It look like mama going to have to get just about everything cut off." Mrs. Jackson not knowing all the symptoms of diabetes regarding her foot - leading to amputation. She put off doctor's appointments, but not because of lacking insurance. Jackie embellishing/lying about Mrs. Jackson's condition to get an ambulance to take her to the hospital, because they couldn't get cab service. Yellow Pages not having podiatrist advertisements in poor neighborhoods. Fire department rules say ambulances must take people to the closest hospital, and Jackie has to plead paramedics to take Mrs. Jackson to Mt. Sinai rather than Saint Anthony. In many cases, because the patient can be too sick or docile to relay the information, the new doctors have to start from scratch- which wastes time and money and sometimes delays proper treatment. Thus, if patients don't have the same provider when they get treated, this can create problems. Dr. Boris Gurevitch - Mrs. Jackson's internist at Mt. Sinai (but he only comes for a couple of hours to a Mt. Sinai outpatient clinic, and he is based in a Russian-Jewish enclave far from Mt. Sinai.) Dr. Gurevich gets additional patients when he is on call in the hospital's emergency room one day a month. Patients who are admitted to the hospital through the emergency room on that day but who do not have a doctor may be referred to him. These patients are almost always blacks and Hispanics from the neighborhood. He picks up a few additional Westside patients through referrals from other physicians, which is how he came to be Mrs. Jackson's doctor. Dr. Robert I. Steinberg - Mrs. Jackson's podiatrist at Mt. Sinai (who also does the outpatient clinic deal, with a practice based far away) Dr. Hector Marino - a general practitioner whom the family had visited for all manner of problems since Jackie was a girl. Medicare pays for Mrs. Jackson's visit with Dr. Marino, where he tried and failed to help her foot with medications. However, when Mrs. Jackson finally needed to get help for her foot, she was taken to Mt. Sinai's outpatient clinic, where Dr. Steinberg hospitalized her, leading to the amputation of her foot. Two decades worth of Mrs. Jackson's medical history were never transferred from Dr. Marino to Mount Sinai, as would be routine for middle-class patients. ***Lack of continuity between private offices and outpatient clinics. Generally considered less desirable than private doctors offices because of the lack of continuity, hospital outpatient departments are used much more commonly by poor minorities than others. Before Medicaid and Medicare were introduced in the 1960s, there was substantial difference in the number of annual doctors visits for rich and poor, black and white. That gap has narrowed because of the two government insurance programs (though many health experts contend that minorities and the poor still are not getting enough primary care, that they should in fact be visiting doctors more often because national surveys continually show that they are the sickest Americans). What has not changed is that race and class still determine the setting in which people get care, and, not surprisingly, separate is not equal. A pioneering study of hospital discharge data in New York City found while elderly New Yorkers in the poorest areas use emergency rooms one and a half times more than their counterparts in affluent areas, they visit hospital outpatient departments four times as often. When patients arrive at a hospital outpatient clinic rather than a private doctors office appointment, they often see medical residents who spend only a few months in one clinic before rotating to the next. People who go to outpatient departments don't have a physician who is really in charge. Jackie was unaware that ASC (a medicar company) could take Mrs. Jackson to both Dr. Steinberg and Dr. Gurevich because she was unaware that she could get her to them for anything less than a $70 round-trip. Dr. Gurevitch leaving outpatient clinic early before Jackie and Mrs. Jackson arrived - and Jackie subsequently took Mrs. Jackson to the emergency room. IN SUMMARY Differences in ability to receive transportation (or awareness of transportation options) Lack of continuity between private offices and outpatient clinics. Minorities and poor don't primarily go to private doctor's offices, but to outpatient clinics and emergency rooms, where they receive sporadic care by different people each time they visit (in many cases, medical records are not transferred between institutions)

Why is Highland Park's dialysis unit more posh than the one Robert uses?

The tragic absurdities of the healthcare system governed by patient's ability to pay are underscored by comparing social work at Neomedica to social work at a dialysis unit in Highland Park, one of the wealthy suburbs north of the city. There, through large picture windows, patients take in views of the woods that envelop the hospital. They sip soda from the well stocked refrigerator, soothe upset stomachs with crackers and soup from the units kitchen, and sit on recliners covered with fresh linen, changed between each dialysis session. As at most dialysis units, Medicare is the primary insurance of nearly all of Highland Park's patients; their secondary coverage is what allows them to luxuriate. Only two are covered by Medicaid, the rest by private insurers whose reimbursements are much more generous. One social worker spends 16 hours a week at Highland Park serving 50 patients, which makes her caseload 25 to 50% smaller than that of Neomedica's social workers. That has to be expected. But after the director of Highland Park's unit offer these numbers, she left. All of the patients who want to work do so, she said. There really is not much for the social worker to do, she continued except make arrangements for patients to receive dialysis when they travel to Europe or Hawaii.

How does coverage vary depending on whether you are receiving standard Social Security, as Mrs. Jackson does, or SSI (Supplementary Security Income) as Tommy Markham does?

There are two primary tracks to provide income and medical care to elderly and disabled people. Mrs. Jackson was on the first track: she received Social Security and was covered by Medicare. The second track is for disabled people who either worked very little over the course of their lives, or work at jobs where contributions are not made to the Social Security system (cleaning women, for instance, often fall into this latter category). They received very low Supplemental Security Income payments-$368 a month in Illinois in 1989, and are covered by Medicaid. The dialysis patient Adelle received SSI and Medicaid, and so did Mrs. Jackson's son Tommy after he was disabled by the stroke. If you receive Social Security - you are covered under Medicare. If you receive SSI/Supplementary Security Income, you are covered by Medicaid. The hitch was that although Mrs. Jackson was on the first track and received the more generous Social Security pension, as well as Medicare, she still needed Medicaid as back up insurance for medications, adult diapers, transportation, and the like. To get it, she had to spend-down her income to the states' medically needy level. In Illinois, again, the medically needy level was $292 and 1989, or 58% of the federal poverty level. Meanwhile, SSI recipients are allowed to keep their full $368 a month and get Medicaid green cards. Basically, there is a disadvantage for Social Security recipients compared to SSI recipients who didn't work.

Why did Mrs. Jackson get Coumadin poisoning?

When Dr. Gurevitch left the outpatient clinic early, leaving Mrs. Jackson and Jackie in the dust, Jackie decided to take Mrs. Jackson to the Mount Sinai emergency room. Mount Sinai does not have well documented records of the visit. Mount Sinai cannot locate the medical records from this encounter. All that is left to document it is a large red emergency room logbook. It shows that Mrs. Jackson was brought to the emergency room at 9:39 AM suffering from "leg edema," a swollen right leg, and was sent home eight long hours later at 5:40 PM. There are also laboratory tests from that day, evidently ordered by the emergency room staff. They show that Mrs. Jackson was beginning to have a dangerous reaction to Coumadin, the drug she was taking to keep her blood from coagulating and thus allow it to flow to her leg and what was left of her foot. The drug was prescribed in an attempt to prevent further amputation, but while Coumadin can be beneficial, it has a very narrow therapeutic margin. It's easy for a patient to overdose on it and bleed uncontrollably. A test call the prothrombin time (PT) measures patients coagulation levels. A normal level is about 11, but Dr. Gurevich did not want Mrs. Jackson's level to be normal, he wanted to prevent her from developing blood clots, which were more likely to perform in a sluggish circulatory system. To do the job, her Coumadin level needed to be 1 1/2 to 2 times the normal reading. Accordingly, the ideal level for Ms. Jackson would've been between 16 and 22. That day in the emergency room, however, Mrs. Jackson's PT level registered 35, more than three times the normal level, so high that her coagulation level needed to be monitored closely in the next few days lest she begin to bleed to death. Yet, according to medical records, no such monitoring took place. How that happened shows how primary care system meet from fraying cloth can rip apart, leaving patients exposed to dangerous illness, even death. The problem could have been solved had the home health nurse drawn Mrs. Jackson's blood for a PT test during that week, but presumably because of inadequate communication between Dr. Gurevich, the emergency room staff, and the nurse, that never happened. Judging from the nurse's notes, she did not seem to be aware that Mrs. Jackson was regularly missing doctors appointments were coagulation level might've been measured. On a Saturday morning, after two missed doctor's appointments, the private ambulance took Mrs. Jackson to the emergency room. Her nose had bled all night because her PT levels were 40 - higher than they had been since the last time she visited the emergency room, suggesting that somehow Mrs. Jackson had mistakenly continued to take Coumadin. Medicare paid for this ambulance trip because it resulted in a hospitalization and was deemed "medically necessary". The federal health insurer would not have paid to get Mrs. Jackson to the doctor earlier in the week, when her high Coumadin level might of been detected and brought under control. Not only would an earlier visit have been better for Mrs. Jackson's health, but it could've saved the government several thousand dollars for the week long hospital stay needed to treat the Coumadin poisoning. *** Even such minimal "prevention" does not comport with Medicare policy, which again, summarily defines nonemergency trips to the doctors office as medically unnecessary. It is not unusual for physicians to have only cursory involvement with home health patients at Mount Sinai and elsewhere. Nurses typically draw up care plans and physicians sign them. One reason for some doctors lack of attentiveness is that Medicare and other insurers do not reimburse them for supervising home patients. In a 1987 Homecare survey, 44% of physicians said the paperwork required too much time, 39% said home cases increased their potential for malpractice suits; and 73% griped about not being paid for the work. IN SUMMARY, Communication breakdown between Dr. Gurevitch at the outpatient clinic, emergency room staff, and nurse. Home health nurse was not aware that Mrs. Jackson was routinely missing appointments where her Coumadin level should have been measured, and as a result, never knew to monitor Mrs. Jackson's PT level. Thus, she kept taking Coumadin per doctor's orders, but didn't know when to stop taking it because she missed appointments with Dr. Gurevitch when she should've been measured (due to inadequate transportation). When it became too late, she had to get an ambulance to transport her and Dr. Gurevitch paid her a visit and knew about the PT test.

According to the author, what changes in Medicaid might affect children like Brianna?

When Jackie was no longer eligible for welfare, she and her children were not covered by Medicaid anymore. Some children now qualify for Medicaid even if their families do not get welfare, a result of congressional reforms enacted in the late 1980s and early 1990s, but Brianna was the only one of the Banes children who could've benefited. There were two main reforms mandated by Congress. One requires states to provide Medicaid to pregnant women and children under age 6 whose family incomes are below 133% of the poverty level. Overlapping that to an extent, the other reform grants Medicaid to all children born after October 1983 whose family incomes are below 100% of the federal poverty level; that group will grow progressively larger each year so that by the year 2002, all children under 18 in families below the federal poverty level will be covered. Brianna could qualify for Medicaid under the first reform until she turned five - although Jackie had not been aware of it and had not signed her up - but the second change would not help the family at all.

Why does being poor affect your chances of getting a transplant?

everal large national studies have shown that the poor are less likely to receive kidney transplants than others, and the process that squeezes them out starts early - preventing them access to transplant waiting lists in the first place. The situation is exacerbated for poor minorities. In Illinois, whites are nearly 3 times as likely to be on transplant waiting lists as others. As of December 1988, 40% of nonblack dialysis patients were on waiting list compared to 15% of blacks. Since the poor do not have the same access to high-quality primary care as other members of our society, the chances are good they will not be referred for consideration of a transplant at the same rate or at the same stage of disease. Too poor to pay for care, they may become too sick to be good transplant risk. Medicare pays for dialysis for as long as patients need it, but the expensive immunosuppressive medications that are necessary after transplant are covered for only one year. With that in mind, nephrologists, who supervise dialysis, may not refer patients for transplants who seem too poor to afford antirejection drugs. While placement on one transplant waiting list may elude the poor, the more affluent can afford to jet around the country and claim spots on several.

Mrs. Jackson received extremely expensive high technology care at the end of her life. Why was so much spent on her in the last three months of her life compared to previous years?

wo weeks into her stay at Oak Forest, Mrs. Jackson deteriorated so badly that she had to be transferred to Oak Forest's acute-care hospital. Her heart disease had worsened; she had contracted pneumonia again; her glucose level rose precipitously high; her kidneys begin to fail in earnest; and she showed signs of septicemia, a life-threatening bacterial blood poisoning that possibly emanated from the large, deep bedsore at the bottom of her spine. Two days later, on April 24, 1990 at 4:30 AM, Jackie received a call from Oak Forest. Her grandmother was dead. According to the medical record, Mrs. Jackson's death was anything but peaceful. After her heart stopped, a medical team tried for a half hour to resuscitate her. They injected her with five separate doses of cardiac stimulants, laid two metal plates on her chest and administered electric shock six times, and, to force air into her lungs, pushed a tube into her nose and down her windpipe. Their efforts were unsuccessful, as medical literature shows is the case 96%-100% of the time when nurses and doctors try to resuscitate hospitalized patients suffering from multiple chronic diseases. Since a DNR order had not been written for Mrs. Jackson, the resuscitation had to be attempted. The difficulty of consulting over the phone for a DNR order, keeping the DNR order current, institutional policies discouraging DNR orders except for severely terminally ill patients, "In a society that claims to have rationed healthcare and where millions of people are without adequate primary care, it's nonsense to be pouring money into moribund patients." Cora Jackson might have agreed. Because the irony is that while the healthcare system gave her everything she needed and perhaps more at the end of her life, she spent most of her early years struggling to get decent and dignified care. In the year before she died, there were times Mrs. Jackson couldn't afford transportation to the doctor so Jackie waited until she became sick enough for an ambulance, times when badly needed disposable diapers were beyond her means, times when Jackie scrimped on her grandmother's medication to make it last a few more days. Yet in the last six months of Mrs. Jackson's life, Medicare spent $120,000 for her hospital care. Mount Sinai received $99,300 for the 148 days she spent there from October 1989 to March 1990, and doctors, more than $10,000. In her last month of life, Medicare paid Oak Forest $8048. *** ALMOST A THIRD OF ALL MEDICARE DOLLARS GO TO PATIENTS IN THEIR LAST YEAR OF LIFE. This has led to debates over rationing, perhaps by limiting care to people over a certain age, or by not providing expensive procedures without proven benefit. But as Mrs. Jackson could've been tested, healthcare has always been rationed, not by procedure or age but by ability to pay and by the nature of government programs, and not at the end of life, but earlier, when debilitating diseases might have been prevented or treatment. For example, what's Robert got sick enough to qualify for dialysis, Medicare undoubtedly improved his access to healthcare. His costly dialysis - $30,000 a year - and, in theory, an unlimited number of kidney transplants were paid for, whereas uninsured women die needlessly from cervical cancer because they cannot afford relatively inexpensive Pap smears, and children are born with brain damage because their mothers could not get prenatal care. Doctors' reluctance to let patients die - first, some doctors, who have vowed "to do no harm," refuse to take what seems to be an active hand in death. Although very few doctors have been sued for withholding or withdrawing treatment, a deep-seated fear exists in the profession that removing a respirator or feeding tube, rather than just withholding one, increases the chances of getting slapped with a lawsuit. While Jackie and her grandmother were at least asked to sign a consent for tube feeding, they were not consulted at all about another key decision to prolong Mrs. Jackson's life. Mrs. Jackson was never asked whether she would want to be artificially resuscitated were her heart to stop. The default position, then, was to administer CPR in all circumstances. Physician's personal influences on care - physicians may use the concept of best interest or therapeutic privilege to promote their own values or notions about what constitutes an acceptable quality of life, which may be quite different from those of the patient. In addition, many strong relationships cannot form between physicians and the poor, inner-city patients, since so many first meet their doctors in that institutional hospital setting. As happened in her case, doctors in poor neighborhoods often have to abandon their patients when they are hospitalized. Nursing home care - under state law, nursing homes cannot evict residents if they are poor, but if they are subsequently hospitalized, nursing homes can refuse to take them back.