Excerpt from Ourselves, Growing Older, by Paula Doress-Worters and Diana Laskin Siegal, in cooperation with The Boston Women’s Health Book Collective
Women are treated with less respect within the health-care system and receive poorer medical care than men. As we age we are in double jeopardy because the widespread bias and discrimination against older people that is so deeply ingrained in our culture exists even among the people and institutions we turn to for help and support.
Ageism manifests itself first and foremost in the attitude that aging is a disease. Gerontology, meaning the study of the aging process from maturity into old age, as well as the study of older people as a special population, is often confused with geriatrics, the medical treatment of old people. Because of male domination in medicine, researchers have emphasized general problems or male problems, without noticing that women experience aging and illness differently.
AGING IS NOT A DISEASE
There is a crucial difference between aging and disease. Both happen at all ages but health care providers and researchers don’t always distinguish between the signs of aging and symptoms of disease.
If we recognize that a particular problem is probably a symptom of disease rather than a normal part of aging, we will be more likely to seek solutions for it. Even if a cure for the disease is not available, specific interventions may help us live more comfortably.
Recognizing the distinction between aging and disease also helps us identify the effects of environmental and social factors on aging. Industrial laborers experience certain health problems earlier than white-collar workers. Similarly, poor women are more susceptible to diseases associated with old age than middle-income women, who have more opportunities to take advantage of preventive services and to deal with health problems before they interfere with daily life.
On television, treatment of injuries and acute illness is portrayed as a drama with heroic doctors winning a life and death battle. Western medicine emphasizes trauma and acute conditions, not care for chronic conditions. In reality, by age sixty five most people have developed at least one chronic health problem; these rarely limit mobility or functioning but often require long-term management to prevent them from becoming worse. Our personal attention and much of the resources of society would be better spent on prevention of disease, on the reduction of complications from disease, and on rehabilitation and continuing care. Many healthcare practitioners dismiss older peoples complaints with the classic put-down: “what can you expect at your age?” Equating aging with illness and pain often causes physicians to overlook manageable complaints and problems.
Four years ago, after a coma from a virus, I couldn’t walk. Neither my doctor nor the physical therapy department knew how to help me. The doctor wanted to put me in a nursing home. When I insisted on a referral to a rehabilitation hospital, the social service department helped me find the best one in the area. After five weeks of special physical therapy I could walk again — not as well as I used to, but I am walking. If I hadn’t insisted on rehab I’d be immobile in a nursing home today. [a seventy-six-year-old woman]
WOMEN’S HEALTH AND THE MEDICAL CARE SYSTEM
Women are central to both the formal and informal health- and medical-care systems. At the same time women’s own health- and medical-care needs are quite different from men’s. Thus any changes either in the insurance or health and medical care systems will affect women the most, especially women over forty. For these reasons alone it is crucial for women to study carefully all proposals to reform health and medical care, whether at the national, state or organizational level. We need to become more active politically to make sure whatever changes are enacted do not disadvantage women or those we care for.
As we go to press, national reform of both the private health-insurance industry and the major government health-insurance entitlement programs (Medicare and Medicaid) is a high and long-awaited priority of the American people. So some change appears inevitable. However, because reform is a political process it is likely to take a long time. The longer national reform takes, the weaker that reform is likely to be, making it more likely that changes will be taking place at the state level, in our institutions, in our own health plans, and among the health industries nationwide.
Issues, Problems, and Prospects for Change
Women are much more centrally involved in the health- and medical-care system than society has recognized. We are half the population, have health needs of our own, and interact with the system twice to three times as often as men.1 Women have been shown repeatedly to be both overtreated and undertreated, depending on their insurance status, income, age and race. We have been discriminated against in treatment settings and excluded from research in ways that have been dangerous to our health and survival.
We are the overwhelming majority of health-care workers: 85 percent in hospitals, 75 percent in the overall system.2 We may also be members of groups working for improved recognition of the health needs of people of color, the elderly, and people with disabilities. We spend tremendous amounts of time, energy, and money on the health needs of others. We advocate for family members, functioning as unpaid administrators, arranging for their care, and accompanying them on medical visits. We frequently organize and manage follow-up care at home after these visits, keeping track of medications and special diets, supervising exercise programs, and being available for therapists and other health workers who visit at home.
Finally, we are central to the physical and mental health of our communities and families, through personal support and caregiving, companionship, volunteer labor in organizations, and acting as citizens in the public interest. We may give as much in unpaid labor caring for elder, infirm, or dependent spouses or parents as we once did caring for dependent children. We frequently sacrifice earning potential and economic security in retirement in order to do so. We take on life-and-death responsibilities without adequate support or resources. Although women are the backbone of the existing health- and medical-care system in many different ways, we get very little in return. Though more than half the population, women have almost no say in how this system works, in spite of how much influence it has over our lives.
Unfortunately, the system and much of society have not fully appreciated the reality of women’s situation and how much women are taken for granted throughout all parts of the health- and medical-care system. It is assumed in many families that all this activity is “women’s work.” Women’s groups and consumer groups, small and underfunded, are usually not taken very seriously on health issues, and are assumed to be complaining, looking out mainly for their own interests and needs.
One problem is that the terms health care and health insurance have become common usage instead of the more correct medical care and medical insurance. Health care includes personal, public, preventive, and environmental efforts not usually included in medical care or covered by insurance. We have a broader view of health and so will use health- and medical-care system to refer to the whole system.
This subject has been in the news during recent years since Dr. Bernardine Healy was appointed the first woman director of the NIH (National Institutes of Health), and created the Office of Research on Women’s Health at NIH, charged with looking at women’s health research in each of the Institutes. She called for the largest series of clinical and community research trials ever conducted on women, costing $500 million (see box, “Selected Agencies Conducting Women’s Health Research”). Responding to clear evidence that women were being ignored in research on chronic diseases, and that results on men were being applied to women incorrectly, this research program will try to close that gap and correct these errors. The NIH health program also calls for incentives to involve more women in performing the research. Finally, portions of the Women’s Health Equity Act of 1992 were passed by Congress, providing a major package of research, services, and education.
However, the existence of this massive focus on women’s health research at the federal level may serve to reinforce the notion that women’s health is only about what goes on inside women’s bodies. This “biomedical model” approach may further delay the understanding of the economic, racial, and cultural determinants of women’s health. This disease-research focus also helps obscure recognition of women’s large role in relation to the functioning of the health- and medical-care system as unpaid workers.
By Norma Meras Swenson, Diana Laskin Siegal, and Paula B. Doress-Worters
The authors of this chapter have spent many years studying the American health and medical care system and its effects on women. We have made an intensive study of the contemporary national health-care reform movement to assess how midlife and older women might be affected by the various proposed changes.
Our conclusion is that the commercial insurance industry’s role is fundamentally incompatible with optimum health for the majority of Americans. This is especially true for women over forty, with or without families, whether or not they work outside their homes. Women over forty are, in fact, the adult group most disadvantaged by private and employer-based health insurance.
In a country with a stagnant or slow-growing economy, and with a rapidly growing aging population, we believe that women’s disadvantaged situation will not improve and may even grow worse. Most women continue to earn consistently less than men for the same work. Jobs are scarce and government-funded “entitlement” programs will continue to be cut, forcing more midlife women to take up the caregiving slack as volunteer and unpaid health workers in their families and communities. Many women approaching retirement today have moved in and out of the work force, often as low-paid, part-time, or temporary workers, because of family demands. Therefore, their Social Security benefits will be low, their pensions and retirement benefits will likely be nonexistent.
We believe it is morally unacceptable for women to be obliged to continue to contribute from their meager earnings to the excessive profits of the very same “health” industries than now obstruct women’s access to reasonably priced, good-quality health and medical care.
As much as we admire and support the Clinton administration’s efforts to achieve universal coverage, we believe managed-competition schemes (see “Reformspeak” box) would be a detriment to women, would cost more than most women can afford, and because they preserve the role and profits of insurance companies, would not reduce costs enough to pay for universal coverage. It is vital that we inform ourselves about all aspects of reform proposals so we can work to correct the double jeopardy of sexism and ageism that is built into the present system and is still in most reform proposals.
We believe only a single-payer system financed from general revenues can actually save money, extend coverage, and provide best for women’s needs. We urge all women to support the single-payer option, to oppose those who would exclude it from debate, and to examine carefully all features of any reform bill at either the state or national level. [End of Authors’ Statement]
GOVERNMENT RESEARCH IN WOMEN’S HEALTH
Although the federal government has never attempted to direct or plan the entire health system, it does spend funds to study many different aspects of health and disease, and how the system works. Listed on the next two pages (see box) is a selection of federal agencies currently involved in some aspect of health research affecting midlife and older women. Several women’s health groups regularly monitor their activities and decisions.
The federal government spends billions each year on health and medical care. Even with the massive planning efforts that resulted in the publication of Healthy People 2000,3 most actual appropriations and funding decisions are made by a political process in congress. Those with the most powerful voices or influence will dominate that process. The result is that less than 3 percent is spent for research on health care of midlife and older women, and on the aging process itself.
As mentioned, women have succeeded recently in calling attention to our needs and in identifying errors and gaps in women’s health research,4 with the result that almost every federal agency, at long last, is including something of concern to women. Some of the research is excellent. Unfortunately, some of the research is of dubious quality and some may be actually harmful to women.5 Results may be gained at the expense of exposing some women to known risks, for example breast or uterine cancer from hormone therapy. Another research project (not part of the NIH Women’s Health Initiative) that has received nationwide attention is the decision to give tamoxifen, a highly potent anticancer drug, to healthy premenopausal women. The purpose is to test whether this exposure will reduce their chances of developing breast cancer.*
Another danger of so much publicity about women’s health research is that we will be lulled by enthusiastic media reports into assuming everything is going well. We must keep involved in monitoring research quality, determining its relevance for various groups of women, and making sure research reporting includes full disclosure to the public. We must ensure that research results are translated into action. Finally, we must make sure the public realizes that research is only one of a number of tasks necessary to improve health for women.
*Many ethicists and women’s health groups protested this research because it exposes healthy women to substantial risks even after the informed consent materials were improved because of the protesters pressure. See Susan Rennie, “Tamoxifen: What Are the Risks?” Ms., Vol. III, No. 6 (May/June 1993), p. 46.
- Naomi Maierman, with Dianna Porter and Lisa Lederer, “Critical Condition: Midlife and Older Women in Americas Health Care System.” Older Women’s League Report, May 1992.
- The Boston Women’s Health Book Collective, The New Our Bodies, Ourselves. Simon & Schuster, 1992, p. 652.
- “Healthy People 2000: National Health Promotion and Disease Prevention Objectives.” Department of Health and Human Services, DHS-91-50212, 1990.
- “Women’s Health Research: Prescription for Change.” Annual Report of the Society for the Advancement of Women’s Health Research, Washington, DC, 1991.
- Testimony by Lynn Rosenberg, Boston University School of Public Health, on The Women’s Health Initiative, October 1991.
Excerpt from “Ourselves, Growing Older,” by Paula Doress-Worters and Diana Laskin Siegal, in cooperation with The Boston Women’s Health Book Collective, Touchstone/Simon & Schuster: 1994
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