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C HA P T E R 8 Women in the Health Care System 8 Women in the Health Care System T he 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, womenâs health needs present an especially confusing picture. Biochemical wizardry allows ba- bies to be conceived in the laboratory in the same countryâindeed, some- times in the same hospitalâwhere 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
I N H E R O W N R I G H T 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 patientsâ point of view, âmen and women in the United States experience different access to health care,â according to Nancy Anne Fugate Woods, Ph.D., professor of nursing and director of the Center for Womenâs Health Research at the University of Washington. Factors beyond most peopleâs control decide who can get needed care and who cannot.1 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? âEach of these factors is affected by gender,â 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 womenâs 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 menâs. After menopause, they turn increasingly to family practitioners and internists. Over their lifetime, women on average also spend more time 154
C HA P T E R 8 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 womenâs quest for medical attention and deprive some of even rudimentary ser- vices. (Certain other aspects of the health care system, meanwhile, may have detrimentalâthough differentâeffects on certain men.) âGrounded in assumptions about men as normal and reproduction as a central aspect of womenâs health,â Woods declares, âour current arrangements have created different access to health care for men and women and perpetu- ated an organization of health services that serves menâs health care needs differently from those of women.â4 GETTING WHAT 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, âmoney, time, and geographyâ determine the answer, according to Woods. Does a patient have a way of getting to a suitable facility at a time when itâs offering service? Can she trust the quality of diagnosis and treatment? Can she afford to pay the bill? Womenâs experience differs from menâs âin each of these dimensions,â Woods notes, but finance âlooms as the critical issue for the decade.â 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 menâ72 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 Americansâand a slightly higher percentage of women than menâ 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
I N H E R O W N R I G H T Of Americaâs 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 65â95% to be exactâhave Medicare, and 77% carry additional private coverage.8 Indeed, âthe elderly enjoy better access to care, in the form of insurance coverage, than any other age group in the nation,â found IOMâs Panel on the National Health Care Survey in 1992. âBy contrast, indi- viduals and families with low incomesââa group that includes millions of mothers and childrenââare not well covered by the federal-state Medic- aid program.â9 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 Medicareâthe decades from 45 to 65â 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.10 A womanâs 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 âperk.â Even among the overwhelmingly female health care workforce, many employees lack health coverage. Some 6% of those staffing doctorsâ of- fices, for instance, have no health insurance, and 52% get no employer contribution toward their premiums.11 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 husbandâs insurance, assuming that she has a husband and he has insurance. Todayâs high divorce rate, however, along with the fact that 15% of employed workersâ dependents lack cov- erage, renders both assumptions tenuous for many.12 But even if a woman does have private insurance, she still may face special disadvantages because a policy as good as a manâs 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
C HA P T E R 8 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.âED.) 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 nationâs 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. âIn contrast to family planning services, abortion services are becoming less available to women,â Woods notes, âeven 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,â which can cost between $300 and almost $2,000, depending on where and when it is performed. âThe 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.â13 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 âacute care, such as hospital- ization, emphasizing curative services more commonly needed by older menââan oversight that pauperizes many old women. Overall, Woods concludes, omitting the services that women need most constitutes âunin- tended rationing of health care based on gender.â14 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, womenâs very role as family nurturers, their âextra-market work as mothers, wives and informal caregivers paradoxically provides health care to others,â 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.15 157
I N H E R O W N R I G H T Further severe rationing occurs by race, income, and geogra- phy. âFor 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,â concurs a report by IOMâs Committee on Monitoring Access to Personal Health Care Services.16 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 Americaâs counties, home to almost a third of reproductive-age women, lack any source of abortion services.17 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 exampleâ96.6 cases per 100,000 women as opposed to 112.9 per 100,000âbut kills them more oftenâ27 per 100,000 versus 23 per 100,000.18 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.19 Simply having mammograms and breast examinations boosts by 20% a womanâs chance of living 5 years.20 âAlthough 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,â says Valerie P. Jackson, M.D., of the Indiana University School of Medicine. âNoncompliance is a prob- lem for all groups of women, but it is particularly prevalent in our elderly and indigent populations,â many of whom cannot afford even $50 for a potentially life-saving mammogram.21 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
C HA P T E R 8 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 âexcessâ 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 ârelative difference in late-stage cancer among different groups is an important clue to the existence of problems with access and, potentially, with subsequent treatment,â 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 formâfatal almost half the timeâbegan showing up in African American infants. âFully preventable by treating infected women with penicillin early in pregnancy,â this killer âshould be a disease of the past,â declares a 1990 editorial in the American Journal of Public Health cited by the access committee. Instead, as a âsenti- nel health conditionâ 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 doctorâs 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 testâs life-and-death importance. For the access committee, such failures raise âthe 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.â25 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 physiciansâ 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. Doctorsâ attitudes also partially explain the Pap gap. Many feel awkward âpressing poor patients to pay for and undergo screen- 159
I N H E R O W N R I G H T ing procedures,â the access committee found, âparticularly 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.â26 Then there is the âreluctance of some physiciansâ to do screen- ing procedures like Paps and breast exams because they feel âdiscomfortâ or think that âthese tests are best left to gynecologistsââspecialists whom poor women are exceedingly unlikely to visit. âInternists and family prac- titioners, however, are specifically trained in these procedures during resi- dency,â the committee notes. Altogether, these âstructural deficiencies in the organization of careâ add up to access problems reaching far âbeyond the usual financial limits.â27 Similar sorts of structural barriers, including physician attitudes, in fact reach well beyond preventive care. âBattering,â the access com- mittee stated, âis a major factor in injury and illness among womenââ indeed, their commonest reason for visiting emergency roomsââbut it is often overlooked by medical professionals.â Though violence may occa- sion up to a quarter of those trips, âemergency care providers typically identify less than 5 percent of the women with injuries or illnesses sugges- tive of abuse.â28 And if the abusing husband or boyfriend controls an abused womanâs 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 âsecretâ 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. âAlthough not substantiated by research, the myth prevails that women have a poorer treatment prognosis than men,â observes IOMâs 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
C HA P T E R 8 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. âStructural barriers,â in fact, seem to affect how doctors treat even so serious a condition as AIDS. When aerosolized pentamidine was the âtherapy of choice,â only half of all eligible patients received it. âMen were four times as likely as womenâ to get this optimal medication, even âafter controlling for disease duration, drug use, and insurance status,â noted the access committee.30 Gay white men were likeliest of all. A similar inequity applied to use of AZT. Even âcontrolling for ability to pay and access to a regular source of care at a clinic,â women got that cutting-edge treatment less often than gay white men. âControlling for disease stage and past history of Pneumocystis cariniiâ as well as for âpatients who received their medical care from public hospital clinicsâ also revealed significant bias against âminorities, women and intravenous drug usersâ as compared to gay white men.31 WHY 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 babyâs birth? Problems often begin with inadequate or nonexistent insur- ance. Mothers between 16 and 24 account for 40% of American births, but a quarter of them lack any private coverage.32 âOnce an affordable service on a middle-class income,â maternity care is now, in the access committeeâs words, âan almost unthinkable expense without health insur- ance.â33 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. âBecause 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- 161
I N H E R O W N R I G H T ers to participate, income is an important barrier to access,â the access committee notes.35 [This situation has improved in recent years, but gaps still exist (R. Gold, Alan Guttmacher Institute, personal communication, February 19, 1997).âED.] As we have seen, a substantial proportion of American mothers receive inadequate prenatal care or essentially none at all. Such neglect helps keep âthe incidence of low birthweight and of certain kinds of preventable complications of pregnancy and delivery . . . too high,â observes IOMâs 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 quarterâmostly rural residentsâuse 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
C HA P T E R 8 Women in the Health Care System nity services. The national crisis in malpractice liability goes the rest of the way. âSeventy percent of U.S. obstetricians can expect to be sued at one time or another,â reports the liability committee. Quite apart from poten- tial financial calamity, a lawsuit constitutes âa serious and often devastating event in the personal and professional livesâ 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.41 Adding to physiciansâ 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 âdeep pocketsâ 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, âit is abundantly clear that medical malpractice claims are not con- fined to the worst practitioners or the worst health care institutions,â the liability committee concluded. âIn 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.â42 Medically unjustified suits, however much they may benefit certain plaintiffs, still carry a high price for other children and their moth- ers. âThe continued increase in the frequency and severity of claims against obstetricians is compromising the delivery of obstetrical services in this country,â the liability committee warns. âThat effect, in turn, is reducing access to obstetrical services for certain groups of women.â43 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- 163
I N H E R O W N R I G H T est, both because they have more complications and low-birth-weight babies than average and because, even with Medicaid, they can cost doc- tors money. Some states reimburse less for a normal delivery than the physician has to pay per patient in liability premiums.44 Staying in the obstetrics business means spending more hours on private patients who can pay their bills. The poor âend up competing with middle-class pa- tients for the physicianâs time.â45 As the percentage of insured women falls, so does the doctorâs ability and desire to practice this expensive specialty. But financial cost alone is not the root of this evil. âFear of suit may be as great a barrier to obstetrical care for low-income women as the rate of reimbursement,â believes the liability committee. Refusing to ac- cept potentially problematic cases strikes many physicians as simple pru- dence. âParticularly with new patients, where the likelihood of a problem pregnancy may be less clear, physicians may screen out poorer women because of their greater potential to develop high-risk pregnancies,â the liability committee observes. Poor women often strike doctors as intrinsi- cally unpromising patients, lacking the knowledge, resources, and com- mitment to stick to the demanding medical regimens that high-risk preg- nancies may require. So how does a physician determine which low-income women to accept? âIt may be easier for the physician simply to stop serving Medicaid patients entirely than to attempt to make such judgments (if desired) on an individual basis,â the committee suggests.46 So, by default, community and migrant health centers provide much of the prenatal care that poor women do manage to obtain. But even they, in the blunt words of one center director, âare often unable to provide on-site or contract off-site prenatal care and delivery services because of the high cost of malpractice insurance.â47 For those that do treat pregnant women, paying for premiums can use up the funds needed to recruit and retain insurable OB/GYNs. Clinics may have to rely on family doctors and nurse-midwives, even though they may lack either the insurance or the credentials needed to deliver in local hospitals. Or the centers may hire newly trained obstetricians, whose lack of experience, in an actuarial absurdity, translates into lack of âaccumulated exposureâ to risk and thus into lower malpractice premiums. All this leaves many centers and clinics with no choice but to 164
C HA P T E R 8 Women in the Health Care System turn pregnant patients away, sometimes without as much as a suggestion of where else to look for help. And those that do manage to provide prenatal care may have to abandon women as labor nears, leaving them âvirtually on their own in locating delivery care.â48 Without backup or referral resources, the family physicians and nurse-midwives at these facili- ties find themselves âin the untenable position of having to choose whether to drop a patient at the time of delivery (and hope she could make it to the emergency room), deliver a baby without medical malpractice insur- ance, or cease furnishing prenatal care altogether,â the liability committee observes. âTerminating care of a patient at the time of delivery not only places the patient in jeopardy and the physician into an ethical dilemma, it also creates potential liability for the physician who ultimately performs the delivery with no prior knowledge of the patient.â49 In a cruel and dangerous irony, then, âthe very factors that call for increased access to care can also intensify a physicianâs sense of risk when caring for low-income patients,â the committee goes on. âThe extent to which low-income women receive late or no prenatal care and are therefore at greater risk has been well documented. . . . Yet it is precisely this information that may underlie physiciansâ sense that care of low-income and Medicaid patients increases their risk of malpractice liti- gation.â50 And most ironic of all, poor women actually sue no more often than their better-off sisters and win smaller judgments when they do. Poorly educated, unsure of their rights, confused by the legal system, unable to claim substantial sums in lost earnings, they often cannot find lawyers to take their cases. But these facts notwithstanding, the committee notes, âthe mere perception . . . that low-income women pose profes- sional liability problems constitutes a barrier to care.â51 Though the liability crisis has taken its most grievous toll on the poor and minorities, its effects on obstetrics reach far up the socioeco- nomic ladder. Significant numbers of physicians, including OB/GYNs, have either limited the number of obstetrical cases they accept or stopped taking them altogether. Family physicians charge lower fees than obstetri- cians, and for many, the economics of providing obstetrical care have become particularly stark. Delivering babies substantially raises their over- all liability premiums. If these cases compose only a small fraction of the 165
I N H E R O W N R I G H T total practice, the added cost of doing obstetrics can easily exceed the income it produces. But then, âwhen family physicians drop obstetrics, women in rural areas are the most severely affected,â the committee notes.52 Where populations are sparse and distances great, shortages of servicesâeven for adequately insured womenâcan 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 âinescapableâ âthe conclusion that a sizable number are doing so.â53 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, âthe 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.â54 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 patientâs coverage. Many family physicians now find it difficult to find a suitable specialist for referring or consulting about a difficult case. âFamily practice obstetrics generally centers on low- risk patients,â the liability committee observed. âAs 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.â55 166
C HA P T E R 8 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 todayâs less personal atmosphere, as women hunt for physicians to accept them and doctors scrutinize patients as potential courtroom adversaries, âerosion of trust is both one of the causes and one of the consequences of the medical professional liability crisis,â 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 âphysiciansâ self-confi- dence and career satisfaction.â57 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, âthe obstetricianâs primary concern [has shifted] from the mother to the fetus and newborn child.â58 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 medicineâs 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 âoften,â the liability committee notes, âsolely for the purpose of avoiding litigation.â59 And, notes Arnold Relman, M.D., former editor- 167
I N H E R O W N R I G H T in-chief of the New England Journal of Medicine and professor of medicine at Harvard, âThe growingâand probably excessiveâuse 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.â60 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 fetusâs 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 nationâs obstetrics train- ing programs had adopted it.61 Systematic study of EFMâs 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 reimbursing 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, âhas 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 [or] the frequency of devel- opmental disabilityâ 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- tricians-in-training no longer gained extensive experience with ausculta- tion and so felt uncomfortable depending on it. The more doctors used EFM, the more patientsâand especially their malpractice attorneysâcame to expect it. Despite the absence of any strong evidence that it protects either mother or child, âthe legal literature suggests that EFM has become the accepted standard of care in many jurisdictions,â the liability commit- 168
C HA P T E R 8 Women in the Health Care System tee found. âThe allegation of âfailure to monitorâ is commonplace in plaintiffsâ 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.â63 Continuous EFM during labor has become common- place, even for low-risk patients. âThe 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,â the chairman of an obstetrics department told the liability committee. But this example, he adds, teaches new gen- erations of physicians to de-emphasize âbedside clinical evaluation and clinical judgmentâ in favor of expensive technology.64 Did doctors in fact adopt the technique for their own rather than their patientsâ protection? âAlthough 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,â the liability com- mittee concluded. âMoreover, the current professional liability climate supports the continued use of EFM, despite overwhelming evidence that it does not improve neonatal mortality and morbidity rates.â65 Such self-protection might be acceptable, however, if, to para- phrase the Hippocratic Oath, it âfirst, did no harm.â 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. âAlthough 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,â Thacker suggests. âThey are therefore less able to tolerate labor and require more sedation.â67 In addition, the liability com- mittee observes that âthe frequency of operative deliveries, primarily ce- sarean sections, has been linked statistically to the use of EFM,â increasing both costs and mothersâ 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, âmost clinical studies have shown . . . can safely be delivered vaginallyâ nonetheless now routinely come into the world by cesarean. Although accepted guidelines provide for vaginally delivering such babies, âin many institutions today all infants who present 169
I N H E R O W N R I G H T by the breech are delivered by cesarean section.â Thacker holds the âmedi- 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.â69 Nor do todayâs residents have either incentive or encourage- ment to learn older techniques to use in tricky situations. âFor many years,â the head of an obstetrics department told the liability committee, âa 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.â70 âThe high cesarean section rate in the United States is a major public health problem,â Thacker warns, âone 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- tice 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.â71 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 careâtwo- 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 womenâs greater longevity; it also reflects their social role. 170
C HA P T E R 8 Women in the Health Care System At every age, a womanâs lifetime risk of entering a nursing home is twice a manâs.73 For all Americans, the need for long-term care rises âsharply with age, as do the effects of chronic disabling disease,â notes IOMâs 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. âPeople without spouses may not have anyone to provide the personal care that would allow them to stay in the community,â 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 âMore women than men,â Woods notes, therefore must âhire someone to provide their care.â76 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 âThe typical nursing home resident is an 80-year-old white widow who has several chronic medical conditions,â 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 âsmaller kin groups and greater financial resources,â notes Barbara Silverstone, executive di- rector of a New York social service agency, in a volume by IOMâs Com- mittee on an Aging Society. Socioeconomic status appears to explain a familyâs 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 familiesâ means. Less than half of the nationâs nurs- ing home bill was paid out of pocket in 1990, and about 40% of that from Social Security. Medicareâs nursing home coverage expires after 100 days, however, with only 20 days paid in full. As a result, Medicaid pays almost 171
I N H E R O W N R I G H T half the nationâs nursing home bill, but, as we have seen in other connec- tions, sharply limits recipientsâ options.80 In a pattern common among families of moderate means, the husband dies first, his final illness deplet- ing the coupleâs 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 daughterâs home. In families that lack adult daughters, sons often pinch-hit, as do daughters-in-law.81 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. âProviding physical or nursing careâ and âthe elderâs exces- sive demands for companionshipâ prove most burdensome, according to Silverstone. âIncontinence, immobilityâ and âmental abnormalityâ top the list of caretakerâs 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. âAides have major responsibilities for which they may have little training or experience to prepare them,â the allied health committee found. âThere is little status, recognition or compensation for this key role.â83 Not sur- prisingly, aides change jobs frequently, and nursing homes report increas- ing difficulty finding suitable staff. As the nationâs 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
C HA P T E R 8 Women in the Health Care System growing demands of AIDS patients. âThe progression of the disease often resembles the chronic illnesses of old age (e.g., dementia and wasting),â the allied health committee writes. âAIDS 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).â85 But as the elderly population continues to grow, âif current morbidity, disability and functional dependence rates and patterns con- tinue,â the allied health committee predicts, âby 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.â86 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 âa more formalized system of care,â surmises IOMâs Committee to Design a Strategy for Quality Review and Assurance in Medicare.87 Despite converging trends and hopeful forecasts, though, âthe nationâs stock of nursing home beds is not keeping pace with the growth in demandâlet alone probable need,â warns the allied health committee. âThe result is that nursing homes usually have high occupancy rates and long waiting lists, thus allowing operators to select âlightâ care and private- pay patients. This policy obviously works to the detriment of those who are poor and most in need of care.â88 As the number of elderly grows, that populationâs 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 womenâs 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? âIn the 70s, Barbara Seaman observed that women get into the health care system via their reproductive organs,â Woods says. This re- mains the case today. âIndeed, some would argue that womenâs health has become a ghetto in which only obstetricians, gynecologists, midwives, 173
I N H E R O W N R I G H T obstetrical and gynecological nurse practitioners and physicianâs assistants assume responsibility. Outside the womenâs health care ghetto, women are relatively invisible and the male is taken as the norm.â Because of this distorted focus, she sees âproblems in diagnosing and treating women based on assumptions that limit cliniciansâ ability to understand health as it is experienced by people of both genders.â89 Because women receive much of their care from a variety of specialists focused on parts of their bodies or livesâobstetricians con- cerned with pregnancy, geriatricians concerned with old ageââthe seg- mented nature of womenâs health services has interfered with our ability to envision health care across the life span for women,â Woods continues. So how should we organize care? Some observers argue for a new specialty in womenâs health, âanalogous to pediatrics or geriatrics . . . oriented to a specific population rather than an organ or body system.â90 Others advocate regrouping existing specialties so that internal and family medicine form womenâs main source of primary care, with obstetrics and gynecology providing mainly referral for special cases and surgical ser- vices. This would entail âinterdisciplinary research to address the gaps in our knowledge of how womenâs reproductive and endocrine cycles affect health and disease,â Woods believes. In addition, âmedical 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 of women and the denial of leadership opportunities to women. Thatâs a tall order.â91 But navigating todayâs 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 familiesâ 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
C HA P T E R 8 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 System for the 21st Century, 24. 10. 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 Treatment for 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
I N H E R O W N R I G H T 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 Strategy for Quality Assurance, Vol. I, 74. 74. Allied Health Services: Avoiding Crises, 261. 75. Americaâs Aging: Health in an Older Society, 154. 76. IOM 1992 Annual Meeting, 165. 77. Allied Health Services, 262. 78. Ibid., 264. 79. Silverstone in Americaâs Aging, 159. 80. IOM 1992 Annual Meeting, 165. 81. Silverstone in Americaâs Aging, 158. 82. Ibid., 163. 83. Allied Health Services, 256. 84. Ibid., 66. 85. Ibid., 90. 86. Ibid., 261. 87. Medicare, Vol. I, 92. 88. Allied Health Services, 263. 89. IOM 1992 Annual Meeting, 166-7. 90. Ibid., 167. 91. Ibid., 168. 176