and Strategies

ly ill are older women. Yet the present system is better suited to treating acute illness.

Due to the advances of medicine, the infectious diseases of the past (polio, measles, TB, meningitis, pneumonia) no longer threaten public health. In their place, the chronic diseases (cancer, heart disease, emphysema, diabetes, arthritis, osteoporosis) have come to the fore. Most are related to aging, and affected by industry-made pathogens in the environment. These illnesses plague older women, but they are also those for which sustained care is least satisfactory and most costly. Unless basic changes are made, "there is serious question whether any professional care resource could be mustered, supported, and deployed to serve that half of the United  ́States' population with one or more chronic diseases or disorders".'

The answer projected by advanced theorists in the health field is alternative methods of health care delivery, starting with self-care by the lay person. If care, not cure, is the primary object, it is argued, what is needed are educational services rendered not only by medical personnel, but by schools, churches, unions, neighborhood centers, etc. People should be taught how to provide the needed care for themselves, their families and their peers.

The development of new medical personnel to take over some of the load is moving forward. Generally if physicians continue to control, and benefit from, services of other health professionals such as doctors' assistants, nurse practitioners, nurses, medics, and paraprofessional personnel, there is less resistance by the medical hierarchy. But the idea of any part of health care delivery slipping out of the control of

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physicians makes the official organs of the medical profession very nervous.

While diagnosis, prescription and monitoring are clearly activities appropriate only to health professionals, preventive measures and support of the chronically ill are not necessarily so. The present medical stance still is resistant to care (and third party payments) outside the direct jurisdiction of physicians. For example, home health care ordered by a doctor can be paid under Medicare as a "medical"

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requirement; "custodial" care, essentially the same thing but not ordered by a doctor, is not reimbursed, although such care for a chronic illness may keep the patient out of an expensive hospital or nursing home. And since medical care is understood to be response to illness, preventive care is also not covered. Older women are very often providers and are usually recipients of home health care, so have an important stake in policies affecting it, and since they are the most health-conscious segment of society, are very concerned with preventive care.

Strategy Principle: Any changes which weaken control by the medical-pharmaceutical complex and provide more options for patients are likely to be beneficial to older women. Such change is especially appropriate and possible in care of chronic illness. So-called "custodial care" must be redefined, adequately reimbursed and removed from control of the medical hierarchy.

Contradiction: When we are ill, we want the top specialist, the most advanced technology, and best care that money can buy. Yet these rising expectations, fanned by the media and the drug industry, reinforce the power of medical specialties and contribute greatly to increasing costs. Is not primary care for everyone a more equitable solution? Should priorities in medical spending be geared to the kinds of care most needed by the population as a whole?

When people are "covered" through third party payments (health insurance or government benefits), an illusion of free care is created, although each service is paid for by the public in one way or another. But this illusion affects the delivery of health service, diminishes our own sense of responsibility for our health; and makes us even more dependent upon high-cost professional services and hospitals.

During the life-span of older women, health care has changed from cottage industry to highly profitable monopoly. For the vast majority of persons, health care for a serious illness is no longer affordable on a personal basis. In consequence, the type of ✔service we seek is determined in large part by what our particular form of coverage will pay. For example, services performed in hospitals are covered most fully, so hospitals are overused. And since providers of health services are paid on a fee-for-service basis, there is a built-in incentive to prescribe the maximum and most costly services."

Because third-party payments obscure the cost of the care we are receiving ("The hospital bill came to $4,590, but I only had to pay $530"), demand is stimulated for ever more services and more expensive ones. In response to growing consumer anger generated by rising but unrealized expectations, doctors now practice defensive medicine, ordering ever costlier diagnostic and treatment procedures to assure that they are protected from malpractice suits and peer review.

What directions are there other than everescalating costs and defensive medicine? Some health planners say, "Consumerize health care," which means that patients should become actively involved in selecting the form of care best suited to their needs. It also implies a need for more flexible and competitive insurance benefits. For example, someone who had made very little use of a hospitalization plan could be deemed eligible for additional benefits in a dental plan. Also, prepaid medical plans, called health maintenance organizaions (HMO's) which have a built-in incentive to keep people well, can make greater use of outpatient services and preventive care. Ambulatory surgery (that is, patients discharged the same day surgery is performed, or surgery at out-patient clinics rather than at hospitals) is another effort to apply "appropriate technology" to health care. With the growth of the holistic health movement, new forms of primary care are developing, with emphasis on self-help, mutual help, and alternative therapies.

Strategy Principle: Older women have a direct stake in expanding the ways in which health care is

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delivered, especially primary care for chronic diseases, but also need access to the most sophisticated services available when these are appropriate. The two modalities are not mutually exclusive, but rather should be complementary. For us, consumerizing health care means becoming active agents in all aspects of our physical well-being.

Contradiction: If we are to become better consumers of health care, then we must take decisionmaking into our own hands. But how do we navigate in a system designed to accommodate and strengthen the position of doctors?

Barbara Walton, in her article "How I Tried to Navigate the System...And Didn't Succeed" (Social Policy, Nov./Dec., 1979), .describes her earnest efforts at making intelligent decisions related to her illness. She recognized that a patient must participate in managing her own case, but putting that into practice was something else. "Believe me," she said, "willingness alone is not enough! My nerveshattering experience over several months has taught me that a patient needs time, energy, and a knowledge of medicine and the medical system." The problems she encountered were typical: doctors who considered her questions an indication of lack of trust; physicians with a bias toward their own competency (i.e., surgeon's urge to cut, etc.); timeconsuming complications in getting the right records at the appropriate time and place; indecisions based on limited knowledge of the art; and misunderstandings due to a new ambiguous relationship between doctor and patient. Yet, despite her own frustrations, she concluded that "The informed healthcare patient will never be fully informed but must be fully involved, for it is his or her life and health that are at stake". How many doctors are ready for this new consumerism, but-also, how many patients? There should be a sense of common humanity on both sides, of equality despite disparity in knowledge and power.

One facet of health consumerism, the concept of "second opinions," is becoming more popular, fostered by insurance companies who want to reduce unnecessary surgery. Since older women have been the prime targets of such surgery-hysterectomies especially-getting a second opinion from a person who does not stand to gain from the procedure is a 'logical first step in decision making. Yet even here the advice is obviously being sought from another member of the same club, with the same training and biases. The current shift away from Halstead (radical) mastectomies toward less disfiguring surgery for breast cancer came about not because doctors in their infinite wisdom determined that other alternatives should be explored, but because women insisted upon it, and will probably have to continue to insist.

But in all this discussion about taking a more active role in managing one's own health care, the right of the patient to choose not to decide should be recognized as as valid an option for some people as any other. There are many older women, among others, who don't want to take on the burden of medical decision-making. Some women don't want the responsibility of finding their own breast lumps, for example. As in other areas of life, dependency has its disadvantages as well as its rewards. Putting major responsibility back on the patient can lessen public responsibility, as well as that of the medical profession. With that shift comes the inevitable danger of "blaming the victim" when things go awry."

Strategy Principle: Changing power relationships in the medical field is a slow, step-by-step process accompanied by a great deal of consciousness-raising of patients. We must press for increased public education and personal involvement, without lessening responsibilities of government and the health care

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