It was Mother's Day and the son of William Schroeder was responding to repeated questions on David Brinkley's television show "This Week." Specifically, how he dealt with competing press information regarding his father's daily condition which at one point, was described as being both much better and much worse at the same time. To this dilemma that all of us face when barraged by conflicting expert advice." Schroeder's son goes right to the source - his mother!
Schroeder said he calls his mother every day to find out his father's condition. In one of the most celebrated and controversial medical experiments of the decade, with the best ethical heads, medical experts and various and sundry "brilliant thinkers,"' Schroeder chooses an old reliable and trustworthy source of familial wisdom to get a fix on the situation. How subtle an acknowledgment of women's role and power in the family medical structure.
But what of their place in the medical power establishment itself? The current realities of the $400 billion dollar health care industry (11 percent of the G.N.P.) are a complicated relationship of multiple forces including the Federal Government, the physician community, hospitals, competing alternative delivery systems, third party insurers, and last but not least, the marketplace the patients themselves, the vast majority of whom are women. What part if any, have they played in major health care policy decision making?
The concept of women as consumers of medical care rather than passive recipients of treatment -the awareness that women's holding to traditional relationships with physicians, i.e., passive, dependent, viewing their doctors as Gods - was ultimately destructive to them individually and as a class, led to my formulating the philosophy of Patient Power." This construct was first published in 1975 in the Journal of the International Academy of Preventive Medicine.
In the early 1970s, when many minority and special interest groups were exploring their own histories and asserting their rights, the acknowledgment of patients as a class - intrinsically holding rights and responsibilities - seemed an appropriate analytical and political vehicle for what I clinically experienced as a general victimization of women (patients) by a generally male medical establishment. This was especially true in the area of reproductive issues where trust, ignorance, fear and dependency resulted in a myriad of problems such as unnecessary mastectomies, hysterectomies, dangerous I.U.D.s, experimental hormonal therapies and iatrogenic (physician caused) pregnancies. Story after story, woman after woman comes to mind... 'My doctor told me to go off the pill to give my body a rest. He never said we had to use anything else." "My doctor didn't believe in sterilizing me because he said I wasn't old enough and didn't have enough children." "My doctor said he gave all his women I.U.D.s." "My doctor said he didn't have to refit my diaphragm after my last abortion." My doctor told me I could use foam."
I am reminded of a conference I attended on PMS (premenstrual syndrome) a few years ago. There were only eight women there, three were nurses interested in the issue and sent by the physicians they worked with, the others were women who came to believe that they were suffering from the disease. Three of these women were in their mid twenties and all three had had hysterectomies. They were told by their doctors that t was the treatment for PMS!
As in any situation where there is a power differential, a ruling class, and a less powerful constituency, it is unlikely that the class in power (physicians) would willingly give up any of their privileges. "Power concedes nothing without demands." The kernel of "Patient Power" was to empower patients as a class with a class consciousness. This thinking has slowly expanded throughout many consumer and health movements in this country. The women's health care movement has played a major role by concentrating and focusing much of its energies on educating a traditionally ignorant and passive population - women patients. Books have proliferated on self help techniques and The Boston Women's Health Collective has issued a new edition of Our Bodies Ourselves. Informed consent - so much a part of the early abortion providers defensive armamentarium - has become almost universally accepted, although there are still a few large and prestigious medical institutions that feel having a patient sign a piece of paper with a physician violates the "trust" that patients (again, mainly women) should have in doctors (mainly men). The concept of Well Care - well woman or well baby - has moved from something "radical" to something "viable." Today, Nurse Practitioners and Physician Associates are more in use and a large percentage of all surgical procedures are able to be done outside hospitals. This move has been generated more by physician/hospital competition on rates than any direct movement from medical consumers. However, it does have trickle down positives for patients - lessening hospital stays and providing care in a generally more compassionate environment. Women do get second opinions - if they are covered or can afford them. After many years of pressure, the general surgical establishment has reluctantly accepted less radical breast surgery. Some humanistic and holistic philosophy has infiltrated some institutions. Much of this is a result of activism from women's health groups and patient constituencies. But, these gains - these small victories - must be put in perspective. They are concessions from the medical establishment that do not actually alter its basic philosophy, which is orientation towards a disease related, aggressive, adversarial relationship with the body rather than a preventative, non invasive one.
This aggressive, scientific offensive approach to medical treatment - allied with powerful technological advances may threaten to turn some of the gains of "Patient Power" into potential danger areas.
There was a point where I felt that the 1973 Supreme Court decision legalizing abortion had elevated the status of women as patients - I called it the Medical E.R.A. for women - because for the first time, it was required that a medical procedure was to be done by the physician in consultation with the patient (the woman). The law had undeified physicians and made the decision for a surgical procedure (abortion) one that, by law, had to have the educated consent of the patient. I viewed this as a triumph of "Patient Power." Today, the fact that women must make this decision in consultation with their physicians may, ironically, result in a possible loss of freedom, autonomy and decision making. Anti choice forces are moving the abortion debate away from purely religious, moral and ethical arguments to those of the scientific and technological. If technology is able to push the level of fetal viability back (below the current standard of 28 weeks), then not only is the Supreme Court's 1973 decision Roe v. Wade "on a collision course with itself" to quote Justice Sandra Day O'Connor, but women's rights are on a course for disaster. As fetuses gain in technological importance - as a "second patient" for the doctors -women's ability to choose whether or not to bring them into this world will become sharply curtailed.
Another example of how "Patient Power" can backfire is evident in the increasing litigious relationship between patient and physician. Reinforced by societal pressure to conform to male defined norms of acceptable womanhood, and in an effort to have more power in the doctor/patient relationship itself, women are becoming increasingly demanding for themselves and their offspring - and in their search for perfection, they are led to believe that only technology can deliver it in response to these consumer demands, physicians are practicing more and more defensive medicine -more and more Cesareans, more stress testing, more sonography - creating newer and more complicated toys, driving the costs of health care higher and higher, lessening accessibility - all resulting in a kind of "Uterine Star Wars."
Physicians are pressured to become even more and more Godlike - and God help them if they don't deliver! In New York, the malpractice rates for obstetrics have been driven so high by enormous settlements that many obstetricians entertain the idea and even make the decision to give up delivering babies. In an environment where everyone is concentrating on offensive weaponry - rather than preventative approaches - there are losses on all sides especially for women.
It is a fact that a significant amount of the massive health care dollars spent in this country are spent for treatment of individuals in the last months of life. In a context of $400 billion dollars, this is a startling figure, especially when juxtaposed with others like: In 1990, the black infant mortality rate will be 14 per 1,000. Only 79 percent of women will receive adequate prenatal care instead of the 90 percent that had been projected by the Public Health Service. According to 1985 Journal of Pediatrics statistics, the gap between black and white infant mortality seems to be widening in the last three years. While Administration officials claim there is no relationship between relevant Federal programs which have been cut and changes in infant mortality, a New York Times editorial points out that the figures strongly suggest a link. Michigan, for example, has lost 25 percent of its funding for maternal and child health programs and the black infant mortality rate has stalled at 23.1. In parts of Detroit, it has been as high as 33 per 1,000.
Ironically, every dollar spent on prenatal care for women at risk of bearing low birth weight babies will have more than $3 in specialized care later. It has been stated and demonstrated time and time again that adequate pre natal care will drastically reduce the amount of low birth weight and problem deliveries. It has also been adequately demonstrated that it is the poor women, the minorities, that suffer most from the lack of ongoing pre natal medical attention. In the area of contraceptive services, a recent study by Margaret Terry Orr et. al. (Family Planning Perspectives. Vol. 17, #2) reveals that only half of all private physicians will provide contraceptive services to Medicaid eligible women, fewer than one third will provide obstetric care. Our society which uses women and sex to sell all of its products offensively, expends minimal financial resources on defense.
And let's take a hard look at what is happening to American teenagers.
A recent study by the Alan Guttmacher Institute revealed the fascinating comparative data that teenage pregnancy rates in this country are more than twice as high as they are in Canada, England and France; three times higher than they are in Sweden and seven times higher than they are in the Netherlands. An analysis of the differences in the systems revealed that it was the availability of confidential and free or low cost contraceptive services combined with realistic sex education programs in the schools along with concurrent liberalized abortion laws that resulted in greater contraceptive use among teenagers. A salient point by Kajsa Sundstrom Feigenburg, a Swedish gynecologist... "We did not think it was a good thing for Swedish teenagers to begin their sexual lives by having an abortion." Many of our country's teenagers, and we see quite a few at CHOICES, begin their sexual lives just this way. The results of female sexuality are surgical invasions. Would we rather "teach them a lesson" than teach them prevention?
It is not uncommon for a mother to call to make an appointment for her 12 year old daughter's abortion and demand that it be done under "local anesthesia" so that she can "learn" from the pain of the experience. This concept of adversarial, invasive conditioning - abortion to teach responsibility - does not exist only in the vacuum of maternal weaponry.
It is a reflection of the larger society (America as mother if you will, as ultimate reinforcer) and the messages and the reinforcements are crystal clear. The only real values are technology and consumerism - as defined and deified by the male power establishment. Women's lives and health have become mere extensions of this - they do not have value in and of themselves, but as consumer items. This concept of being a perfect product operates not only for ourselves but for our children as well.
It thrusts us to diets, to exercise, to cosmetics and ultimately, to technology, to achieve that elusive state of consciousness and existence known as being "10," being perfect.
In this sense, the women's movement has not only been co-opted it has become part of male dominated mainstream thinking. A kind of thinking that results in more and more consumerism, more and more technology, and less and less true (female defined) liberation.
It is time for women to change the climate of the debate. It is time for us to re define and reorder our national priorities.
Is it right that the majority of our health care dollars go to dying patients in the last months of their lives when children in their mother's wombs or in the first months of their lives are being neglected? Isn't the price for the medical boys playing with their toys too high? Yes, DeVries is brilliant. Yes, a perfect artificial heart down the road sometime, somewhere may be of major benefit to the few (and they include the research and medical communities).
The New York Times reported on Friday, May 24, that the artificial heart had received a sweeping endorsement from a committee of experts appointed to study its potential impact on society. The report called for greatly expanded Federal research to develop a fully implantable permanent artificial heart. To quote the study, "Such devices could provide a significant increase in lifespan with an acceptable quality of life for 17,000 to 35,000 patients below age 70 annually."
What does this say about our national ethics and priorities?
The benefit to the many must be weighed against the benefit to the few. John Stuart Mill's doctrine of Utilitarianism demands that you take an individual case and multiply it for all the world and if it works for everyone, it is an assumptive good. Virtue is based on utility and conduct should be directed towards promoting the greatest happiness for the greatest number of persons. According to that criteria, artificial hearts would fall very low on the scale. Not every person needs one and indeed, not everyone who may need one will want one. But, on the other end of the spectrum, there are millions of mothers and would be mothers who need adequate prenatal care and education. There are millions of teenagers who need, indeed, require information and help to equip themselves for sexual survival in the onslaught of the culture and the media. This is where the money should be spent. We cannot, in fact, allow a military mentality to dominate our medical establishment. The offensive arsenal does not have to be purely technological. Unlike the military industrial complex, the medical establishment does not have an "evil empire" to blame for the massive expenditure of dollars. They are, in fact, not elected and do not directly answer to any constituency.
Women who are concerned about power, who are in positions of power, must go beyond their own self interest to see that their having a perfect baby, their being super women with careers and families, is not the ultimate positive result of the revolution! Just as the notion of power in the women's movement must be one of the universal collective rather than the individual personal, "Patient Power" must begin to move from the individual patient's relationship with her physician to a broader, more active political and class consciousness. The power of women as patients, and as medical consumers, cannot exist only within the limited confines of family or the home.
Women are the primary constituency of the medical establishment and must understand that until they have a major voice in how the money being spent, how the research is being directed, what technological priorities are being established, and until all women (those who would be, and those who would choose not to be mothers) and their children are given the information they need from various sources, the preventative care they need from physicians is a government that acknowledges them as a priority - and a commitment of DOLLARS - women may be less than second class citizens...they are victims.
Merle Hoffman is publisher/editor-in-chief of On The Issues magazine and founder/president of both Choices Women's Medical Center, Inc., and Choices Mental Health Center.