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. .-.-:-:-:-:-:-:-:-:-:-:-.-.-. . .. -:-::::-:-:-:-:-:-:-:-:-::::::::-:-.- ::--- :::-: ~ .-:-:-:-:-:-:-:-:-:-----------:-:-:-:-:-:-:-:-:-:-: . -:-:-. .-::-:-::::: ::-:: :'::-:-::-. -:-:::::::::::::::-:- :::-. I-:- : - = - :-: ~:-:: -, .! ~-- -I --- I -:. - . : .. - ... -:- .. a-.:. ~ - .. ::- -.-.- .- ' 2-:--:-.- -:-:--:-- ::: Women in the Health Care System The American health care system is a mass of contradictions. Our great medical centers boast the most sophisticated technologies, the most expert subspecialists, the most massive research enter- prise the world has ever seen. Yet our people meanwhile suffer some of the worst rates of infant mortality and cervical cancer, among other pre- ventable tragedies, in the industrialized world. Our talented medical pro- fessionals perform at the peak of their art while many ordinary citizens go without routine care. To paraphrase a famous World War II military motto, the difficult we do immediately. The simple takes a lot longer. In this increasingly complicated system, women's health needs present an especially confusing picture. Biochemical wizardry allows ba- bies to be conceived in the laboratory in the same country indeed, some- times in the same hospital where women who have gone their entire pregnancy without seeing a doctor arrive unannounced in advanced labor. Teams of specialists transplant bone marrow in hopes of saving women from late-stage breast cancer at the same time that many other women have no access to the routine exams and mammography that could detect tumors in the more easily curable early stages. This tangle of paradoxes permits few sweeping generalizations about the American experience of health care, except perhaps for this: in a number of significant ways, the system treats the genders differently. 153

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I N H E R O WN R ~ G HT Whether as patients or as health care providers, women function within it in a distinctively feminine fashion. Differences show up most obviously, perhaps, in the health care professions. Large numbers of women now practice medicine, but men still predominate in such prestigious posts as those of Professors and _ . . . . . . deans. Women throng the lesser-paying fields as nurses; allied health pro- fessionals like technicians, audiologists, and occupational therapists; and low-skilled workers like nurses aides and home health care aides. As pa- tients seeking a doctor or trying to pay their bills, women also differ from men. They have specifically female patterns and needs, but the American health care system, like much else about the medical enterprise in the United States, still operates on a largely male model. Most crucial from the patients' point of view, "men and women in the United States experience different access to health care," according to Nancy Anne Fugate Woods, Ph.D., professor of nursing and director of the Center for Women's Health Research at the University of Washington. Factors beyond most people's control decide who can get needed care and who cannot.) Do appropriate providers offer the right services at places and times the patient can get to? Do they have room for her in their schedules and practices? Will they accept her? Does she find the services acceptable? Can she pay for them? "Each of these factors is affected by gender," Woods notes.2 Each plays out differently for males and females. Women get sick more often than men, as we have already noted. Not surprisingly, they use health services more often and are more likely to seek them from a regular source of care; fully 84% of women, but only 75% of men, depend on a usual provider. And women's use of medical services follows a distinctive pattern. Until age 15 or so, girls and boys both see a pediatrician or family practitioner. For the next three decades, though, until the mid-forties, many women use an OB/GYN as their main medical advisor; men almost never get primary care from doc- tors who specialize in their reproductive system. Childbearing accounts for much of this difference, of course, and as women age their patterns again begin to more closely resemble men's. After menopause, they turn increasingly to family practitioners and internists. Over their lifetime, women on average also spend more time 154

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C HA P T E R 8 Cal Women in the Health Care System in hospitals, including psychiatric ones, where they account for a larger portion of inpatient admissions than men. Both genders need and use more medical care as they grow older. Regardless of age, though, the poor visit doctors less often than other Americans.3 But the fact that women make greater use of medical facilities does not guarantee that they get all the care or the kind of care they need. Bureaucratic arrangements and intellectual assumptions, many totally un- related to the real needs of real people, vastly complicate many women's quest for medical attention and deprive some of even rudimentary ser- vices. (Certain other aspects of the health care system, meanwhile, may have detrimental though different effects on certain men.) "Grounded in assumptions about men as normal and reproduction as a central aspect of women's health," Woods declares, "our current arrangements have created different access to health care for men and women and perpetu- ated an organization of health services that serves men's health care needs differently from those of women."4 GETTING Or ONE NEEDS Central to any medical system is the basic question of whether people can get what they need when they need it. In this country, "money, time, and geography" determine the answer, according to Woods. Does a patient have a way of getting to a suitable facility at a time when it's offering service? Can she trust the quality of diagnosis and treatment? Can she afford to pay the bill? Women's experience differs from men's "in each of these dimensions," Woods notes, but finance "looms as the critical issue for the decade." As a group, women are far less able than men to pay for all the health care they need.5 One of the reasons is obvious: women simply earn less than men 72 cents for every male dollar in 1991, giving them less money to spend on both bills and insurance premiums.6 More than three-quarters of all Americans and a slightly higher percentage of women than men- nonetheless have some form of coverage. But women less often use pri- vate plans and more often depend on public assistance programs like Med- icaid, which drastically curtail options because many providers refuse publicly funded patients.7 155

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I N H E R O WN R ~ G HT Of America's 37 million uninsured, whose choices are even more drastically limited, 17 million are female. Of the women who have insurance, the youngest and oldest are less likely than average to hold private policies; those under 24 are least likely of all. Nearly all women over 65 95% to be exact have Medicare, and 77% carry additional private coverage.8 Indeed, "the elderly enjoy better access to care, in the form of insurance coverage, than any other age group in the nation," found IOM's Panel on the National Health Care Survey in 1992. "By contrast, indi- viduals and families with low incomes" a group that includes millions of mothers and children "are not well covered by the federal-state Medic- aid program."9 Women in the childbearing years face the highest risk of inadequate coverage, at a time in their lives when need is often acute. Later, between menopause and Medicare the decades from 45 to 65- they are likelier than men to have no insurance at all. These uninsured come disproportionately from the ranks of minorities, the unemployed, and singles, whether divorced, widowed, or never married.~ A woman's chance of getting medical care thus depends cru- cially on her employment and marital status; she may often find herself disadvantaged compared to a comparable man. Fewer female workers get insurance as a job benefit, with the disproportionately female holders of part-time and unskilled jobs least likely to enjoy this valuable "perk." Even among the over~vLelmingly female health care workforce, many employees lack health coverage. Some 6% of those staffing doctors' of- fices, for instance, have no health insurance, and 52% get no employer contribution toward their premiums. And even in this age of two-pay- check families, many mothers still cut back their work hours or leave the labor force altogether, at least temporarily. A full-time mom thus usually finds herself at the mercy of her husband's insurance, assuming that she has a husband and he has insurance. Today's high divorce rate, however, along with the fact that 15% of employed workers' dependents lack cov- erage, renders both assumptions tenuous for many. But even if a woman does have private insurance, she still may face special disadvantages because a policy as good as a man's still may not protect her adequately. Plans providing the same benefits for both genders often leave women uncovered during the two periods when they need it 156

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C HA P T E R 8 Cry Women in the Health Care System most, the childbearing years and old age. In the reproductive decades, most policies disallow pregnancies conceived before beginning a job and many exclude cancer screening, pregnancy, delivery, postpartum care, and abortion services. (However, the recent Kennedy-Kassebaum Health In- surance Bill prohibits denying insurance coverage based on medical con- ditions. ED.) More than 80% of family physicians offer family planning, but most private plans consider it unreimbursable preventive care, leaving patients to pay for office visits and birth control supplies out of their own pockets. Poor women, of course, can resort to the nation's 5,000 family planning clinics, which together provide more than a third of total contra- ceptive services. But in public as well as private facilities, preventing a pregnancy and terminating it are two different stories. "In contrast to family planning services, abortion services are becoming less available to women," Woods notes, "even though the number of abortions performed remains relatively constant. Federal policy has left poor women without access to abortion care, and many private insurance carriers do not cover the service," which can cost between $300 and almost $2,000, depending on where and when it is performed. "The 1978 Pregnancy Discrimination Act permits abortion services to be excluded from coverage. To my knowledge, there is no other federal regulation that condones the exclu- sion of a health service to men."~3 Then, in old age, Woods adds, women face the crushing costs of long-term care, whether in institutions or their own homes. Most policies, however, including Medicare, stress "acute care, such as hospital- ization, emphasizing curative services more commonly needed by older men" an oversight that pauperizes many old women. Overall, Woods concludes, omitting the services that women need most constitutes "unin- tended rationing of health care based on gender."~4 Lack of child care during medical appointments and office or clinic hours that conflict with jobs and family responsibilities are among the more formidable nonfinancial obstacles. Indeed, women's very role as family nurturers, their "extra-market work as mothers, wives and informal caregivers paradoxically provides health care to others," Woods notes, but can prevent them from meeting their own needs. Although 82% provide an annual physical for their children, only 69% get one themselves.~5 157

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I N H E R O WN R ~ G HT Further severe rationing occurs by race, income, and geogra- phy. "For poor patients, financial problems are exacerbated by the neces- sity of coping with lack of transportation, child care, and the ability to take time off from work," concurs a report by IOM's Committee on Monitoring Access to Personal Health Care Services. In both city neigh- borhoods and rural counties across America, a severe shortage of doctors who accept Medicaid, or the total absence of any doctors at all, forces the ill and expectant to choose between long journeys and foregoing care altogether. More than 80% of America's counties, home to almost a third of reproductive-age women, lack any source of abortion services.~7 Whether due to insufficient insurance or unmanageable logis- tics, inadequate access translates into needless suffering and death. People who cannot see a doctor, whatever the reason, miss the relatively cheap and simple preventive services and screenings that can forestall costly ca- tastrophes like late-stage tumors and complicated births. Lack of preven- tion thus creates a deadly class discrepancy. Breast cancer strikes African American women less often than whites, for example 96.6 cases per 100,000 women as opposed to 112.9 per 100,000 but kills them more often 27 per 100,000 versus 23 per 100,000.~8 In poor areas, tumors are 20% more likely to have reached the lethal late stages by the time they are found than in more affluent locales. Over a period of 15 years, incidence of late-stage cancers fell by more than 21% in high-income communities but by only 6% in poorer ones.~9 Simply having mammograms and breast examinations boosts by 20% a woman's chance of living 5 years.20 "Although we can detect tumors as small as 3 to 5 milligrams with mammography, we continue to see too many large, clinically obvi- ous carcinomas that carry a poor prognosis," says Valerie P. Jackson, M.D., of the Indiana University School of Medicine. "Noncompliance is a prob- lem for all groups of women, but it is particularly prevalent in our elderly and indigent populations," many of whom cannot afford even $50 for a potentially life-saving mammogram.2i Since Medicare now pays for screening (as opposed to just diagnostic) mammograms, cost should no longer be a deterrent and compliance should improve. Another deadly malignancy, vastly simpler than breast cancer to prevent, detect, and cure, reveals even more disturbing inequities of access. Cervical cancer, though easily found in its early, and even precan 158

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C HA P T E R 8 Cal Women in the Health Care System cerous, stages by the cheap and reliable Pap smear, strikes African Ameri- can women twice as often as whites and kills them three times as often. Many of these deaths, and particularly the "excess" ones, reflect plain neglect. A Pap test even once every five years slashes mortality by 84%, once every two years by 93%. In the early 1970s, African Americans had largely lethal late-stage diagnoses about as often as whites, but twice as often by the late 1980s.22 So large a "relative difference in late-stage cancer among different groups is an important clue to the existence of problems with access and, potentially, with subsequent treatment," notes the IOM committee on access.23 Nor is cancer screening the only routine care whose lack dis- proportionately kills poor and nonwhite Americans. In the late 1980s, a deadly venereal disease supposedly vanquished decades before began an ominous rise. The syphilis rate among African American adults more than doubled in only four years, and the congenital form fatal almost half the time began showing up in African American infants. "Fully preventable by treating infected women with penicillin early in pregnancy," this killer "should be a disease of the past," declares a 1990 editorial in the American journal of Public Health cited by the access committee. Instead, as a "senti- nel health condition" it marks a serious public health failure.24 Such a lapse entails more than poor financial or physical access, however. Even getting herself to a clinic or doctor's office provides a poor person no assurance of good-quality care. Fully three-quarters of the women who missed a mammogram during a two-year period had seen a doctor during that time. Many of those physicians failed to convey the test's life-and-death importance. For the access committee, such failures raise "the question of why the test was not performed during the visit and whether the barrier to screening here is one of poor-quality care rather than access to care."25 Part of the answer lies in where a woman gets her care, a factor that can strongly influence its quality. Fully 85% of health maintenance organization members get a timely Pap smear, as opposed to 75% of private physicians' patients. Only 58% of those without a regular health care source had the test in the past three years, usually at a public health or community clinic. Doctors' attitudes also partially explain the Pap gap. Many feel awkward "pressing poor patients to pay for and undergo screen 159

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I N H E R O WN R ~ G HT ing procedures," the access committee found, "particularly if the patients were having difficulty paying their rent. Similarly, when a diabetic patient can barely afford the cost of medication, her physician may be reluctant to urge her to have a mammogram that is expensive and often not covered by insurance."26 Then there is the "reluctance of some physicians" to do screen- ing procedures like Paps and breast exams because they feel "discomfort" or think that "these tests are best left to gynecologists" specialists whom poor women are exceedingly unlikely to visit. "Internists and family prac- titioners, however, are specifically trained in these procedures during resi- dency," the committee notes. Altogether, these "structural deficiencies in the organization of care" add up to access problems reaching far "beyond the usual financial limits."27 Similar sorts of structural barriers, including physician attitudes, in fact reach well beyond preventive care. "Battering," the access com- mittee stated, "is a major factor in injury and illness among women"- indeed, their commonest reason for visiting emergency rooms "but it is often overlooked by medical professionals." Though violence may occa . sion up to a quarter of those trips, "emergency care providers typically identify less than 5 percent of the women with injuries or illnesses sugges- tive of abuse."28 And if the abusing husband or boyfriend controls an abused woman's money, insurance, or car keys, she may never get to see a doctor about her injuries at all. A similar kind of blind spot has kept many women from get- ting appropriate care for another "secret" disorder, alcohol and drug abuse. Based, as we have seen, on the model of the masculine alcoholic, treat- ment programs may not be meeting the true needs of women. "Although not substantiated by research, the myth prevails that women have a poorer treatment prognosis than men," observes IOM's Committee for the Study of Treatment and Rehabilitation Services for Alcoholism and Alcohol Abuse.29 Indeed, even such basic questions as whether women would benefit from a somewhat different approach, from all-female groups, or from female counselors, remain unanswered. Because substance abuse ac companies depression or other affective disorders so much more often in men than in women, the committee believes that assessing general mental health and treating depression must play a prominent role in treatment programs oriented toward females. Other useful elements, often absent 160

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C HA P T E R 8 Cal Women in the Health Care System from male-centered programs, include child care, support services for fami- lies, and help developing strategies for coping with stress. "Structural barriers," in fact, seem to affect how doctors treat even so serious a condition as AIDS. When aerosolized pentamidine was the "therapy of choice," only half of all eligible patients received it. "Men were four times as likely as women" to get this optimal medication, even "after controlling for disease duration, drug use, and insurance status," noted the access committee.30 Gay white men were likeliest of all. A similar inequity applied to use of AZT. Even "controlling for ability to pay and access to a regular source of care at a clinic," women got that cutting-edge treatment less often than gay white men. "Controlling for disease stage and past history of Pneumocystis carinii" as well as for "patients who received their medical care from public hospital clinics" also revealed significant bias against "minorities, women and intravenous drug users" as compared to gay white men.3i WI:IY A CRISIS IN ACCESS? Unlike AIDS, pregnancy and childbirth are neither rare nor extremely dangerous. Unlike HIV infections, they do not call for special clinical expertise. Countless physicians know how to deliver babies; hos- pitals across the country own the necessary equipment and even the latest in neonatal high-tech. So why do so many expectant Americans find it impossible to get appropriate care? Why, as their due date approaches, must they undertake frantic, sometimes futile, hunts for someone to see them safely through their baby's birth? Problems often begin with i , . . .nac equate or nonexistent ~nsur ance. Mothers between 16 and 24 account for 40% of American births, but a quarter of them lack any private coverage.32 "Once an affordable service on a middle-class income," maternity care is now, in the access committee's words, "an almost unthinkable expense without health insur- ance."33 Under a third of the uninsured therefore get proper prenatal care, as opposed to 81% of the insured.34 But neither Medicaid nor even a private policy guarantees a woman what she needs. "Because many insur- ance plans do not cover prenatal care and because Medicaid does not reimburse for these services at levels high enough to encourage all provid 76]

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I N H E R O WN R ~ G HT ers to participate, income is an important barrier to access," the access committee notes.35 tThis situation has improved in recent years, but gaps still exist (R. Gold, Alan Guttmacher Institute, personal communication, February 19, 1997~. ED.] As we have seen, a substantial proportion of American mothers receive inadequate prenatal care or essentially none at all. Such neglect helps keep "the incidence of low birthweight and of certain kinds of preventable complications of pregnancy and delivery . . . too high," observes IOM's Committee to Study Medical Professional Li ability and the Delivery of Obstetrical Care.36 The typical American mother-to-be consults a private physi- cian, usually an obstetrician, who also delivers the baby at a hospital. A quarter mostly rural residents use general practitioners or family physi- cians. Another 10% or so see other professionals, usually nurse-midwives.37 But these figures mask the fact that substantial numbers of women cannot find a professional to provide continuity through the entire pregnancy and birth. They have no choice, once labor starts, but to turn up, unknown and unannounced, at whatever emergency room they can reach. Along with inadequate health insurance, two other factors have combined to push good-quality prenatal and maternity care out of the reach of large groups and whole areas of the United States, many doctors and clinics out of the business of caring for pregnant women, and many laboring mothers into ill-prepared emergency room deliveries. The first is medical geography. Obstetrician-gynecologists, like most specialists, clus- ter in and around cities, leaving great stretches of countryside scantily served by the physicians best equipped to handle challenging pregnancies. Almost three dozen states have areas with fewer than 20 OB/GYNs per 100,000 women of childbearing age, almost a score have areas with fewer than 10 per 100,000, and 400,000 women in 22 states live in areas with no OB/GYNs at all.38 In the populous Northeast, few family doctors take obstetrical cases. In more sparsely settled regions like the North Central plains, deliv- ering babies has long formed a routine part of general practice, and family physicians account for two-thirds of those providing private rural obstetri- cal care. In fact, whether a newly trained family physician wants to do obstetrics often decides if he or she begins a rural or metropolitan prac- tice.39 But location goes only so far to explain the shortage of mater 162

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C HA P T E R 8 Cal Women in the Health Care System nity services. The national crisis in malpractice liability goes the rest of the way. "Seventy percent of U.S. obstetricians can expect to be sued at one time or another," reports the liability committee. Quite apart from poten- tial financial calamity, a lawsuit constitutes "a serious and often devastating event in the personal and professional lives" of conscientious people who work long hours and carry immense responsibilities.40 Both numbers of suits and the size of settlements have climbed in all medical specialties over recent decades, but most steeply in obstet- rics.4i Adding to physicians' anxiety is the knowledge that many claims brought to court may not even reflect true malpractice, in the sense of incompetent or negligent care. Desperate parents of children born with defects may have nowhere to look for help with their ruinous expenses but to the "deep pockets" of malpractice insurers. Citizens of countries with universal coverage like Britain and Canada bring many fewer such claims. With lawsuits striking more than two out of three obstetri- cians, "it is abundantly clear that medical malpractice claims are not con- fined to the worst practitioners or the worst health care institutions," the liability committee concluded. "In fact, many observers believe that the most substandard physicians are the least likely to be sued, because they serve patients who are too poor and too uneducated to file claims.... Some of the best physicians are the most likely to attract suits."42 Medically unjustified suits, however much they may benefit certain plaintiffs, still carry a high price for other children and their moth- ers. "The continued increase in the frequency and severity of claims against obstetricians is compromising the delivery of obstetrical services in this country," the liability committee warns. "That effect, in turn, is reducing access to obstetrical services for certain groups of women."43 The ever-present possibility that any less-than-perfect outcome will precipitate an emotionally and financially draining lawsuit persuades many doctors either to refuse service to the riskiest patients or to give up obstetrics altogether. Along with the size and probability of judgments, the cost and difficulty of buying malpractice insurance have also risen rapidly. Doctors who remain in the field, whether OB/GYN specialists or family practitioners, often find that escalating insurance premiums can make delivering babies a prohibitively expensive business proposition. Not surprisingly, these pressures hit poor patients first and hard 763

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I N H E R O WN R ~ G HT total practice, the added cost of doing obstetrics can easily exceed the . . . income it produces. But then, "when family physicians drop obstetrics, women in rural areas are the most severely affected," the committee notes.52 Where populations are sparse and distances great, shortages of services even for adequately insured women can become even more severe than among the urban poor. Scores of counties, whole regions of certain states, have no obstetrical providers. No one knows for sure how many physicians have reduced or abandoned obstetrics practice because of malpractice li- ability issues, but, the committee found "inescapable" "the conclusion that a sizable number are doing so."53 Similar liability concerns have meanwhile sharply curtailed the activities of nurse-midwives, who charge much less than physicians. Though permitted to practice in all 50 states and entitled to Medicaid reimbursement since 1980, they, too, have found insurance increasingly unobtainable. Certified nurse-midwives have a good record of safe deliv- eries, but nonetheless, "the difficulties in obtaining professional liability insurance in many states have made it virtually impossible for nurse-mid- wives to practice other than as the employees of physicians. Many nurse- midwives would prefer to form their own practices and employ physicians as consultants for high-risk or complicated deliveries. Without available insurance, however, this practice pattern, which affords maximum profes- sional autonomy, while not illegal, is practically impossible."54 But even if a woman can find a doctor still doing obstetrics, she may collide with the fact that more and more now decline to take high- risk cases, regardless of the patient's coverage. Many family physicians now find it difficult to find a suitable specialist for referring or consulting about a difficult case. "Family practice obstetrics generally centers on low- risk patients," the liability committee observed. "As obstetricians reduce high-risk care, fewer referral sources are available to a rural practitioner. Furthermore, low-risk obstetrical cases can become high risk, even during delivery, and the family physician may feel particularly vulnerable to suit in such cases."55 166

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C HA P T E R 8 Cal Women in the Health Care System CHANGING PRACTICES Responding to these many pressures, physicians in recent de- cades have changed a good deal more than whom they treat. They have also changed how they treat, using more high technology and practicing more defensively. In a 1985 survey of obstetricians, for example, 41% acknowledged altering their methods because of concern about liability.56 No matter what type of practitioner a woman sees, her maternity care probably reflects the malpractice crisis. Of all the changes of recent decades, perhaps the most pro- found is the decline in the confidence and familiarity that once bound doctor and patient. In today's less personal atmosphere, as women hunt for physicians to accept them and doctors scrutinize patients as potential courtroom adversaries, "erosion of trust is both one of the causes and one of the consequences of the medical professional liability crisis," the com- mittee believes. On the one hand, fewer and fewer Americans have long- standing family physicians whom they feel they know personally. More and more see contact with a doctor as a business relationship, and a dissat- isfied client is much likelier to sue than a disappointed friend. On the other hand, the threat of litigation undermines "nhvsicians' self-confi- dence and career satisfaction."57 1 J These trends permeate most medical fields these days. A second change in attitude, however, uniquely affects obstetrics. Over the past several decades, notes Stephen B. Thacker, M.D., of the Centers for Disease Control and Prevention, "the obstetrician's primary concern thas shifted] from the mother to the fetus and newborn child."58 Pressure to produce a perfect infant each and every time has increased, both as insur- ance claims have mounted and as highly touted new technologies have raised public expectations of medicine's ability to work wonders. Some of the resulting changes, experts note, involve such im- provements as more and better information for patients, much greater use of informed consent, and far clearer explanations of risks. But others have proven both costly and medically dubious. Consultations and referrals have increased, sometimes to benefit the patient through expert guidance, but "often," the liability committee notes, "solely for the purpose of avoiding litigation."59 And, notes Arnold Relman, M.D., former editor 767

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I N H E R O WN R ~ G HT in-chief of the New England Journal of Medicine and professor of medicine at Harvard, "The growing and probably excessive use of fetal moni- toring and cesarean sections undoubtedly stems in part from this fear of the legal action that might result should the pregnancy yield anything less than a perfect baby."60 Introduced in 1960, electronic fetal monitoring (EFM) initially appeared to offer a more reliable substitute for the century-old practice of auscultation, or listening to the fetus's heart through a stethoscope. Victo- rian doctors knew that an abnormally slow fetal heartbeat could spell trouble. By the end of the 1960s, EFM, including ultrasound and EKG monitoring of the fetus, was common for high-risk pregnancies. Used during labor, early observations suggested, it reduced stillbirths, injuries, and deaths. journal articles and professional meetings extolled these ad- vantages. By 1976, three out of four doctors surveyed believed EFM suitable for all pregnancies, and all but one of the nation's obstetrics train- ing programs had adopted it.6i Systematic study of EFM's efficacy, how- ever, lagged far behind its rapid spread. Both industry and the National Institutes of Health supported development of the technology but not evaluation of its effects. Blue Cross, Medicaid, and other insurers began . . . . . . relmburslng without question. Eight out of nine randomized clinical trials of EFM, however, have found little basis for the early enthusiasm. Not a single one of these studies, the liability committee reports, "has shown a statistically signifi cant decrease in the rate of prenatal death, intraparal stillbirth . . . or frequency of neonatal intensive care admissions.... These studies suggest that EFM simply has not done what its proponents argued it would do: it has not reduced neonatal morbidity and death tor] the frequency of devel- opmental disability" such as cerebral palsy.62 Once doctors and hospitals had invested in the equipment, though, they rapidly integrated it into both practice and teaching. Obste trlclans-ln-tralmng no longer gained extensive experience with ausculta- tion and so felt uncomfortable depending on it. The more doctors used EFM, the more patients and especially their malpractice attorneys came to expect it. Despite the absence of any strong evidence that it protects either mother or child, "the legal literature suggests that EFM has become the accepted standard of care in many jurisdictions," the liability commit 168

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C HA P T E R 8 Cry Women in the Health Care System tee found. "The allegation of 'failure to monitor' is commonplace in plaintiffs' medical malpractice complaints. Hospital attorneys routinely ad- vise obstetricians both to use EFM and to save the tracing tape in case a claim is made."63 Continuous EFM during labor has become common- place, even for low-risk patients. "The sole purpose of such surveillance may be only to provide a heartbeat-to-heartbeat credible objective record for defense purposes in the event of future litigation," the chairman of an obstetrics department told the liability committee. But this example, he adds, teaches new gen- erations of physicians to de-emphasize "bedside clinical evaluation and clinical judgment" in favor of expensive technology.64 Did doctors in fact adopt the technique for their own rather than their patients' protection? "Although data relating EFM use to medi- cal liability concerns are limited, it appears that the initial acceptance of EFM technology was fueled in part by such concerns," the liability com- mittee concluded. "Moreover, the current professional liability climate supports the continued use of EFM, despite over~vLelming evidence that it does not improve neonatal mortality and morbidity rates."65 Such self-protection might be acceptable, however, if, to para- phrase the Hippocratic Oath, it "first, did no harm." But EFM, for all its apparent lack of medical benefits, costs an estimated $750 million a year.66 And beyond that, evidence suggests it may be in some cases actively harmful. "Although difficult to prove, it is thought that there is a higher incidence of dystocia "failure to progress in labor] among women who have continuous electronic fetal monitoring, the reason being that they are unable to walk," Thacker suggests. "They are therefore less able to tolerate labor and require more sedation."67 In addition, the liability com- mittee observes that "the frequency of operative deliveries, primarily ce- sarean sections, has been linked statistically to the use of EFM," increasing both costs and mothers' risk of injury.68 This rising rate of cesarean births in fact constitutes the other major change in obstetrical practice over recent decades. Certain kinds of infants who, Thacker argues, "most clinical studies have shown . . . can safely be delivered vaginally" nonetheless now routinely come into the world by cesarean. Although accepted guidelines provide for vaginally delivering such babies, "in many institutions today all infants who present 769

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I N H E R O WN R ~ G HT by the breech are delivered by cesarean section." Thacker holds the "medi- cal-legal environment . . . responsible. With so few vaginal breech deliv eries, there is less opportunity to educate residents; we have therefore an increasing pool of physicians with little or no experience in performing such deliveries."69 Nor do today's residents have either incentive or encourage ment to learn older techniques to use in tricky situations. "For many years," the head of an obstetrics department told the liability committee, "a standard part of my teaching to medical students and residents had been to perform only medically and obstetrically indicated cesarean sections, uninfluenced by other considerations such as inconvenience, time of the day or night, interference with office hours, monetary gain, or threat of malpractice. I can no longer in good conscience continue to teach the latter principle when the practical results may be a multimillion-dollar suit that can ruin a career and a lifetime of study and service."70 "The high cesarean section rate in the United States is a major public health problem," Thacker warns, "one that is having and will continue to have a major impact on health care delivery. If the $800 million that could be saved by reducing the cesarean section rate by 5 percent were spent instead on prenatal care and preventive programs, dramatic effects on maternal and child health would be seen. This shift, in my opinion, is very unlikely to occur, given the current medical-legal environment, which has resulted in a siege mentality among clinicians. If one also considers that less than 20 percent on the dollar paid for malprac . . . . . . . . . . . trace premiums Is given to Injured parties, our current tort system Is clearly very expensive, inefficient, and because of its adverse effects on the deliv- ery of maternity care, dangerous."7i ELDER CARE At the end of life, as well as at its beginning, women face specific obstacles to getting appropriate health services. They constitute the great majority of Americans who must buy long-term care two- thirds of those needing nursing homes, 80% of those needing them for five years or more.72 This dependence on professional caregivers repre- sents more than women's greater longevity; it also reflects their social role. 170

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C HA P T E R 8 Cal Women in the Health Care System At every age, a woman's lifetime risk of entering a nursing home is twice a manes 73 For all Americans, the need for long-term care rises "sharply with age, as do the effects of chronic disabling disease," notes IOM's Committee to Study the Role of Allied Health Personnel. Only 2% of those aged 65 to 74 live in nursing homes, but 32% of those above 85. But far more than age, far more than physical condition, the factor that deter mines who moves into an institution and who gets to stay at home is marital status. "People without spouses may not have anyone to provide the personal care that would allow them to stay in the community," the committee observes.74 And women constitute the great bulk of elderly persons without spouses. Three-quarters of men over 65, but only a bit over one-third of their female contemporaries, live in a married couple. By 85, one-third of men but only 8% of women still have a living spouse.75 "More women than men," Woods notes, therefore must "hire someone to provide their care."76 Eighty-four percent of the seniors in nursing homes are not currently married, as opposed to only 64% of the similarly impaired persons able to remain outside of institutions.77 "The typical nursing home resident is an 80-year-old white widow who has several chronic medical conditions," according to the committee. She has lived in the institution a year and a half and arrived there from a hospital. African Americans constitute only 6% of these institutionalized women, members of other races a mere 1%. Nonwhite families, the committee concludes, more often than whites care for their elderly relatives at home rather than placing them in institutions.78 This difference probably reflects financial exigency rather than cultural preference. Better-off people tend to have "smaller kin groups and greater financial resources," notes Barbara Silverstone, executive di- rector of a New York social service agency, in a volume by IOM's Com- mittee on an Aging Society. Socioeconomic status appears to explain a family's approach to long-term care better than does its race or ethnicity.79 One thing certain is that the cost of good-quality long-term care far exceeds most families' means. Less than half of the nation's nurs- ing home bill was paid out of pocket in 1990, and about 40% of that from Social Security. Medicare's nursing home coverage expires after 100 days, however, with only 20 days paid in full. As a result, Medicaid pays almost 77]

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I N H E R O WN R ~ G HT half the nation's nursing home bill, but, as we have seen in other connec- tions, sharply limits recipients' options.80 In a pattern common among families of moderate means, the husband dies first, his final illness deplet- ing the couple's resources. The pauperized surviving widow must then depend on public programs for her own long-term care. Still, 42% percent of impaired elderly Americans live at home, over 80% of them dependent on family members, usually wives or adult daughters. Others hire at least some care. A study of three-generation families found that daughters in their forties and fifties averaged between 8.6 and 15 hours per week helping their aged mothers, and up to 28.5 hours if the mother lived in the daughter's home. In families that lack adult daughters, sons often pinch-hit, as do daughters-in-law.8i Filial devotion exacts a high price from many families. Two- thirds of those caring for an impaired elder report both physical and emo- tional strains. "Providing physical or nursing care" and "the elder's exces- sive demands for companionship" prove most burdensome, according to Silverstone. "Incontinence, immobility" and "mental abnormality" top the list of caretaker's problems, with the last the most troubling of all.82 Such trials eventually convince many families to place the eld erly relative in a nursing home, where her welfare now depends primarily on the quality of the care provided by aides, the staff members in most frequent contact with residents. Typically a 35-year-old, high-school-edu- cated woman who has no nursing training, an aide does a demanding job for low pay and scanty benefits. On her current job less than 2 years and in the health care field less than 5, she nonetheless carries out tasks ranging from sorting linens to observing symptoms and giving first aid. "Aides have major responsibilities for which they may have little training or experience to prepare them," the allied health committee found. "There is little status, recognition or compensation for this key role."83 Not sur- prisingly, aides change jobs frequently, and nursing homes report increas- ing difficulty finding suitable staff. As the nation's elderly population in- creases, so will the demand for these key front-line workers, as well as for other allied health personnel who deal with the ailments of aging, includ- ing professionals such as physical and occupational therapists and audiolo gists.84 Exacerbating the tight market for competent aides are the 172

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C HA P T E R 8 Cry Women in the Health Care System growing demands of AIDS patients. "The progression of the disease often resembles the chronic illnesses of old age (e.g., dementia and wasting)," the allied health committee writes. "AIDS patients therefore need some of the same services as the elderly and may compete for scarce resources (e.g., skilled nursing care and home health services)."85 But as the elderly population continues to grow, "if current morbidity, disability and functional dependence rates and patterns con- tinue," the allied health committee predicts, "by the year 2000 about 50 percent more noninstitutionalized elderly people will require the help of others in daily living activities than required such help in 1977.-86 With more people living longer, with increasing numbers of three- and even four-generation families, and with more middle-aged women in paying jobs, the prospects for informal caregivers providing the needed help look increasingly grim. These forces may all combine to force the nation to- ward "a more formalized system of care," surmises IOM's Committee to Design a Strategy for Quality Review and Assurance in Medicare.87 Despite converging trends and hopeful forecasts, though, "the nation's stock of nursing home beds is not keeping pace with the growth in demand let alone probable need," warns the allied health committee. "The result is that nursing homes usually have high occupancy rates and long waiting lists, thus allowing operators to select 'light' care and private- pay patients. This policy obviously works to the detriment of those who are poor and most in need of care."88 As the number of elderly grows, that population's ratio of females to males is also rising, and since women continue to require more health services than men, those without excel lent private insurance or substantial private means will find it harder and harder to get the care they need. Although older women's plight has not yet grown as desperate as that facing some of the pregnant poor, access to appropriate care promises to become even more challenging in the future. A FEMALE GHETTO? "In the 70s, Barbara Seaman observed that women get into the health care system via their reproductive organs," Woods says. This re- mains the case today. "Indeed, some would argue that women's health has become a ghetto in which only obstetricians, gynecologists, midwives, 773

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I N H E R O WN R ~ G HT obstetrical and gynecological nurse practitioners and physician's assistants assume responsibility. Outside the women's health care ghetto, women are relatively invisible and the male is taken as the norm." Because of this distorted focus, she sees "problems in diagnosing and treating women based on assumptions that limit clinicians' ability to understand health as it is experienced by people of both genders."89 Because women receive much of their care from a variety of specialists focused on parts of their bodies or lives obstetricians con- cerned with pregnancy, geriatricians concerned with old age "the seg- mented nature of women's health services has interfered with our ability to envision health care across the life span for women," Woods continues. So how should we organize care? Some observers argue for a new specialty in women's health, "analogous to pediatrics or geriatrics . . . oriented to a specific population rather than an organ or body system."90 Others advocate regrouping existing specialties so that internal and family medicine form women's main source of primary care, with obstetrics and gynecology providing mainly referral for special cases and surgical ser- vices. This would entail "interdisciplinary research to address the gaps in our knowledge of how women's reproductive and endocrine cycles affect health and disease," Woods believes. In addition, "medical students would learn how to identify themselves across gender lines, all specialties would become more user friendly to women, and the medical profession would ., . . . . . . .. . ~ . . . rectify its past inequities In its conceptualization ot women ant the c Anal of leadership opportunities to women. That's a tall order.''91 But navigating today's uncoordinated and costly care system is a tall order as well, and one that women must face throughout their lives, as they try to solve their own and their families' health problems. Spurred by their unique physiological needs and often complicated by their par- ticular social and economic situation, that challenge will grow no easier until thoroughgoing reform puts adequate health care within the reach of all Americans of both genders. NOTES 1. IOM 1992 Annual Meeting, p. 157. 2. Ibid. 3. Ibid., 157. 174

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~ HA P T E R 8 cry Women in the Health Care System 4. Ibid., 156. 5. Ibid., 159. 6. Ibid. 7. Ibid., 160. 8. Ibid., 160. 9. Toward a National Health Care Survey: A Data Systemfor the 21st Century, 24. 1 O. IOM 1992 Annual Meeting, 160. 11. Ibid., 161. 12. Ibid. 13. Ibid., 163-4. 14. Ibid., 162. 15. Ibid., 165-6. 16. Access to Health Care in America, 134. 17. IOM 1992 Annual Meeting, 164. 18. Access to Health Care, 87. 19. Ibid., 88. 20. Ibid., 87. 21. Effectiveness and Outcomes in Health Care, 53-4. 22. Access to Health Care, 89. 23. Ibid., 86. 24. Quoted ibid., 66. 25. Ibid., 85. 26. Ibid., 85-6. 27. Ibid. 28. Ibid., 134. 29. Broadening the Base of Treatmentfor Alcohol Problems, 358. 30. Access to Health Care, 164. 31. Ibid., 165. 32. Ibid., 27. 33. Access to Health Care, 41. 34. Medical Professional Liability and the Delivery of Obstetrical Care, Vol. II, 60. 35. Access to Health Care, 51. 36. Ibid. 37. Ibid., 14. 38. Ibid., 15. 39. Ibid., 18. 40. Ibid., 87. 41. Ibid., 2. 42. Ibid., 87-8. 43. Ibid., 2. 44. Ibid., 60-2. 45. Ibid., 87. 46. Ibid., 63. 47. Ibid., 69. 48. Ibid. 49. Ibid., 70. 50. Ibid., 63. 51. Ibid., 65. 52. Ibid., 47. 53. Ibid., 42. 54. Ibid., 51. 175

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I N H E R O WN R ~ G HT 55. Ibid., 45. 56. Ibid., 75. 57. Medical Professional Liability, Vol. I, 87. 58. Thacker in Medical Professional Liability, Vol. II. 59. Ibid., 83. 60. Relman in Medical Professional Liability, Vol. II, 102. 61. Thacker in Medical Professional Liability, Vol. II, 10. 62. Medical Professional Liability, Vol. I, 79. 63. Ibid., 81. 64. Ibid., 83. 65. Ibid., 81. 66. Ibid., 82. 67. Thacker in Medical Professional Liability, Vol. II, 31. 68. Medical Professional Liability, Vol. I, 82. 69. Thacker in Medical Professional Liability, Vol. II, 23. 70. Medical Professional Liability, Vol. I, 83. 71. Thacker in Medical Professional Liability, Vol. II, 38. 72. IOM 1992 Annual Meeting, 165. 73. Medicare: A Strategyfor Quality Assurance, Vol. I, 74. 74. Allied Health Services: Avoiding Crises, 261. 75. America's Aging: Health in an Older Society, 154. 76. IOM 1992 Annual Meeting, 165. 77. Allied Health Services, 262. 78. Ibid., 264. 79. Silverstone in America's Aging, 159. 80. IOM 1992 Annual Meeting, 165. 81. Silverstone in America's Aging, 158. 82. Ibid., 163. 83. Allied Health Services, 256. 84. Ibid., 66. 85. Ibid., 90. 86. Ibid., 261. 87. 88. 89. 90. 91. Medicare, Vol. I, 92. Allied Health Services, 263. IOM 1992 Annual Meeting, 166-7. Ibid., 167. . Ibid., 168. 176