Power to the Patient

Lowell Levin, Associate Professor of Epidemiology and Public Health at the Yale University School of Medicine, is trained in both education (Ed.D. from Harvard) and public health (M.P.H. from Yale). This unique combination allows him to look at the intersection of the two disciplines with unusual insight.

He was active in the civil rights movement and was one of a group of Yale faculty who served as arbitrators between the medical school and the local community during the protest demonstrations during the late sixties. Those negotiations resulted in the establishment of the community-run Hill Health Center.

He is the author, with Alfred H. Katz and Erik Holst, of Self-Care: Lay Initiatives in Health, and is an Advisory Editor of Medical Self-Care Magazine.

TF: Lowell, you’ve probably school health education as extensively as anyone in the field. What do you think about the way health is taught in American schools?

LL: School health education is a real disaster area. Not only are we not teaching our kids much that is useful, we may be actively destroying their innate abilities to care for themselves.

Health is frequently taught by bored P.E. teachers who have little theoretical and no clinical training. It’s like studying auto mechanics with somebody who’s never picked up a wrench in his life. It’s a rainy-day activity. Few take it seriously.

We desperately need to transform our so-called health classes into experiences that genuinely promote increased self-care, self-discovery, and opportunities for increased control of one’s own life. In fact, that’s probably the single most important thing we could do to solve the so-called health crisis in this country. We need to give our kids a good solid education in clinical medicine, just like we do in reading and arithmetic.

How can a health class damage a child’s ability to care for himself?

By teaching children to conform to a very narrow, professionalized view of what health is all about. We’re teaching them that chiropractors and herbal remedies and homeopathy and other healing approaches are dangerous and harmful. In so doing, we’re prejudicing them against approaches that might be very useful tools.

We teach them that illness is a negative concept and not to be talked about. Health classes never talk about illness—though of course that’s exactly what children are most curious about. The message is that only health workers are capable of knowing about such things— which is absolute rot. These classes have been a real form of social control, and it’s no accident that organized medicine has had a very active role in determining the content of these classes

What do you think we should be teaching in the schools?

Some of the same things we teach in medical school basic human anatomy and physiology and the causes and treatment of disease. Use the school nurse or doctor as a teacher, and use the actual illness experiences of children and their families as opportunities to learn about illness.

We should teach them to diagnose and treat common minor health problems. We should also teach them which kinds of health problems really require professional help. We should teach them medical consumer skills, so that they’re not helpless pawns when they walk into a doctor’s office or go into the hospital. We should teach children to take a good medical history, and to understand the questions and what the answers mean.

Suppose you were a parent. How would you go about getting such a program started in your local school?

I’d start by talking with other parents, sharing my feelings and whatever information I had. I’d try to get parents and teachers together with people working in self-care, visiting some self-care projects. I’d try to give them an opportunity to experience some self-care education for themselves.

Then I’d put it on the agenda of the local PTA or welfare mother’s group or whatever kind of parents’ group existed—maybe invite someone working in selfcare to give a presentation. Then get the parents and teachers to come up with some specific proposals.

I don’t think you can have a good self-care program without the parents’ support, because what you have to do is really put the learners in charge. Give the students the initiative to invite people to come to class— physicians, dentists, alternative healers, runners, meditators, people from self-help groups. Give the kids a feeling that it really is up to them, that health is not just another thing they’re going to have rammed down their throats. You need parental support for that, because that’s a hard idea to sell to traditional educators.

There seems to be a real reluctance to discuss disease with children. A classmate of the children in a class I taught had a brain tumor. Our kids were very curious about what was going on with him. Why was he in hospital? Why was he being kept home? Why had he lost all his hair? What did it mean that he had cancer? Was he going to die? But they’d definitely gotten the message that it wasn’t okay to ask, that it was something so horrible you just didn’t talk about it.

I wanted to invite him and his parents and perhaps his doctor to come and talk to the class about what was happening. The other teachers were horrified. They felt that having him talk about his experience would be too scary for the children.

Yes, and it’s in large part this very pattern of treating such serious illnesses as if they were taboo—except for professional health workers—that makes being seriously ill such a frightening experience. Not only are you sick, but nobody will talk with you.

How did you first get interested in self-care?

It really grew out of my fascination with what was happening in the women’s movement in the early 1970’s Passing the speculum technology on to individual women seemed to point the way toward a much broader transfer of skills and responsibility in health. I got very interested in extending that kind of health empowerment to the population as a whole. Compared to what was happening in the new women’s clinics, most of what was being called health education was a pretty feeble effort.

The women’s clinics were teaching skills that really empowered the people who learned them. They were teaching laypeople to do things that had previously been done only by doctors. They were really transferring knowledge and power from the professional to the client.

Maybe you could describe the proposed adult selfcare project you’re working on in New Haven.

Our project is set up to allow four different communities to plan and carry out self-care programs that would meet their own needs. The four communities are very different in economic and ethnic composition. One is a blue-collar neighborhood with a good number of first- and second-generation southern European and Puerto Rican families. It’s served by a consumer governed free clinic. The second is a predominantly Black and Puerto Rican community with a strong community health center. The third is an economically depressed area which recently lost its textile industry. It’s a depressed working-class area, served by a community hospital and its clinics. The fourth is a university community—students, staff, and families—served by a prepaid medical plan on campus.

What’s the goal of your project?

We want to see what kind of self-care programs the four different communities will come up with. What kind of educational processes will they prefer? What content will they consider important? What outcomes will they want to use in measuring the success of the program?

The people in the communities will plan the program?

Right. We’ll let it be known, through the community, that there are resources available to set up some kind of a self-care or health-education program, but the organizing and planning will be done with the people in the community. They’ll decide how the program is structured, how long it will run, what will be included, and how it will be evaluated. I would anticipate that the four different communities will come up with four very different programs.

After the formal “program” is over, the people involved will continue to learn and to participate in meeting their own health needs. A good self-care program should include not only skill empowerment, but process empowerment. What’s going on in that community that affects people’s health? Maybe it’s environmental pollution. Maybe it’s lack of exercise. Maybe it’s on-the job stress. Whatever it is, it’s the people in the community who should be setting the goals.

Lowell, must lecture and speak about self-care as much as anybody. What kind of reception do you get when you go out to talk about self-care?

I guess the most difficult point to get across is that self-care is not just an extension of health education. We’re not just talking about creating some new, canned programs for professionals to run on the unsuspecting masses. We’re talking about big changes in professional roles, big changes in role for health consumers. We’re talking about shifting the initiative in health care from doctors and other health workers to the individual.

I am less interested in whether self-care will cut down on the use of services than I am in whether it will improve the quality of self-care practice, professional services, and the interaction between the two. Self-care may indeed save us money, but I don’t think that should be the main objective of these programs. For a self-care perspective, the enemy is not the disease, but ignorance and powerlessness.

So far, we’ve been looking at self-care from the point of view of the consumer. How are our doctors going to feel about it?

I think that physicians in primary care will be cautious. Once you empower people to make their own decisions, some people will make decisions other than the one the doctor would have preferred. An empowered consumer might also opt for some kind of care other than that offered by the traditional M.D.

Self-care-educated people will be much more assertive. Their questions will be sharper, they will demand more information, more education. They will ask health workers what they plan to do in much greater detail, and they will expect good answers. They will be more likely to seek different opinions or approaches.

Self-care offers additional degrees of freedom for both health workers and individuals, but it doesn’t mean that every individual will be on his or her own in health decision-making. The staunchest advocate of self-care, going in for major surgery, would want to be able to rest his or her trust in the surgeon doing the operation, to go to sleep trusting that everything would be all right. There are times when this parental, assuring role is very appropriate.

It’s less valuable, perhaps even harmful, when the parental attitude is used when somebody comes in with a stress-related illness. If the doctor just gives these people a Valium and a pat on the head, he or she may be doing them a disservice.

Doctors need to identify situations in which it is appropriate for them to say, “I can’t deal with this effectively,” and perhaps suggest that they make lifestyle changes or involve themselves with a self-help group.

You know, the basis of the whole problem of healthcare costs is that the provider almost always decides what the consumer needs. Health professionals make nearly all decisions about purchasing hospitalization, lab tests, drugs, physician’s services, and so forth. When these decisions are made solely by the provider, all economic controls go by the boards. It would be like going to the grocery store and having the checkout clerk tell you what groceries you had to buy.

A self-care-educated mother monitoring the health of her children can make very useful health judgments about her child—saving time and effort and minimizing the need for professional services. Family and friends can, in many cases, provide better health care than any hospital, because they share the client’s culture. So self-care offers some attributes far superior to what any professional could supply.

Some people in the alternative technology movement are calling self-care appropriate medical technology. Would you agree?

Very much so. Because we’re not talking about bringing in vast new programs, run from the top down. We’re talking about using resources we already have—and have been overlooking for years.

I wouldn’t want to overemphasize health workers’ resistance to self-care. A great many health workers are very excited about self-care, because it gives them an opportunity to get out of professional roles they find personally unsatisfying.

I couldn’t agree more. I’ve always felt that physicians who tend to be curt and abrupt with their patients—who show their stress in their patient relationships—do so because of the strain of having to deal with the patients who appear passive and helpless, who come in demanding that the doctor do things he couldn’t possibly do. If I were a physician, I’d much prefer working with assertive, educated clients who understand and believe they can and must participate in what’s going on.

I’ve been on the faculty of a number of workshops devoted to self-care for health professionals and I’ve been struck by the way that health workers, especially physicians, when they start to trust you and really start letting down their hair, will say that they feel at the mercy of their patients.

These doctors feel harassed by endless forms and paperwork, and on top of all that, now the public doesn’t love them any more. There’s a lot o f stress, a lot of anger. And there’s a wide-spread realization that they’ve gotten themselves into a role that’s not very satisfying.

That is very interesting. Those kinds of workshops are an extremely valuable resource, because we’re beginning to find more and more health professionals becoming—would you believe it—alienated.

Nurses have been feeling this way for a long time, and now alienation is creeping into other sectors of the health establishment. Medicine really is being demystified. The mystique is beginning to crumble—not only for consumers, but for the health workers themselves. They’re beginning to ask, Who am I? What am I doing here? Who needs us, anyway? Are there other ways of being a hearth worker that would be more useful to myself as well as my clients? And so on.

I would think that an important part of the workshops you’ve described would be an opportunity for health workers to meet in open dialogue with their clients.

One of the great gains of self-care is going to be to let us see our doctors as people. If you scrape the money away, you can see that doctors are insecure, beset by self-doubts, and under a lot of pressure—just like all the rest of us. But their training and society’s fantasies about their function have perpetuated a role in which they’re not able to admit their feelings, their fears, their uncertainties.

It’s encouraging to see that a great many medical students are excited about new career opportunities as educators.

Yes. I think that’s going to be the biggest future role for primary care physicians, nurse practitioners, and physicians’ associates. Health workers who are communicators and educators are going to be very much in demand. I think that the enthusiastic reception your magazine has received is a case in point.

I’ll have to admit, I’ve been stunned by the way Medical Self-Care Magazine has been accepted by health workers and health workers’ organizations. I got into this work very disillusioned with-conventional medicine, and I expected to be considered a real rebel, attacked by the AMA, the whole bit. It’s been absolutely the contrary. In fact, I’ve just been invited to speak to the AMA’s Annual Rural Health Conference.

It’s at these conferences, like the AMA Rural Health Conference you mentioned, that many health workers get introduced to these concepts—and so do other professionals- such as librarians, social workers, and agricultural extension workers.

In fact, that’s the stage self-care is in right now— networking. Getting the word around. Helping people connect with others with similar interests. Some of these networks are very informal communities with homey mimeographed newsletters. Some are more formal—some of the best national networking is being done by the National Self-Help Clearinghouse in New York.

What do you see ahead for self-care?

I would hope that we would see some changes on three levels: changes in our understanding of what self-care is, changes in government health programs as the result of an increasing awareness of self-care as a resource, and a gradual extension of the goals of the self-care movement.

Up to now, self-care has been thought of as an individual activity. I think we’re going to move toward a view that also takes into account the health-care-giving functions of nuclear and extended families, friendship networks, affinity groups, churches, mutual aid groups, libraries, groups of fellow-workers, and political groups. We’re going to broaden our notion of the nonprofessional health-care resource.

Second, I think that legislators considering new state and federal health legislation will have to be very sensitive to its effect on our lay health resources. We don’t want to professionalize these resources. We want to supplement and humanize professional health care by nurturing existing lay health-care strategies.

Finally, I think we’re going to see the self-care movement taking on some broader social and political goals—improving the environment, improving our communities. I would hope that self-care could build on its strong base of individual action and seek to improve our individual and community health by social action as well.

Tom Ferguson MD Written by Tom Ferguson MD

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