Everybody talks about what doctors should do for us. But there are things we should do for ourselves, too.
As a doctor told me some years ago, "The patient is his own best advocate."
"Patienthood" is the fine art of learning how and when to seek medical care.
Dr. Eugene D. Robin of Stanford University -- in a provocative new book, "Matters of Life and Death" (W.H. Freeman, $21.95; paper, $11.95) -- sums it up this way: "Your rights as a patient are inseparable from your responsibilities as a patient . . . Learn to make an informed choice from among the alternatives available."
And he tells a story.
A woman of 44 was dying of heart failure caused by pulmonary hypertension. Her doctors wanted to open the affected lung to find the precise problem. Her husband asked: Would the operation be painful? Could she die? Could it help her get well?
The answers, after some equivocation, were honest. Yes, she would suffer. She might die. No, the result could not help her. The husband and wife said no to the operation.
"It is not that the doctors were badly trained," Dr. Robin explains. "They were highly motivated, good humans. But they . . . watched her dying day by day and wanted to do something, however ill-conceived."
The lesson, he says, is that patients have "both the right and responsibility" to ask: Why are you doing this? What are the risks? The benefits? How safe is it? If a test is involved, how accurate is it? Can the result help me?
By learning more about doctors and medicine, he says, "You run the risk of feeling insecure in dealing with doctors. . . . You may find yourself less ready to accept medical advice, but some degree of reservation is often warranted."
Questioning doctors takes a healthy degree of assertiveness. Dr. Marvin Belsky, a New York internist, says: "Doctors need to stop playing God, but that's not enough. You've got to get up off your knees. But that alone is still not enough. You've got to begin to share responsibility for your health."
If you want more information, Dr. Robin says, ask. If you disagree, say so -- "Any doctor worth his fee welcomes an informed patient." If you are confused about what course to take, "Ask your doctor where he would go or whom he would consult were he in your situation. Don't be satisfied by partial or evasive answers."
Assertiveness need not mean belligerence. At some point we must decide whether to trust or mistrust our doctors, and if trust is our choice, we have other important obligations as sensible patients:
* Openness. A patient once told Belsky, "A good patient is a patient who tells his doctor everything and doesn't hide anything. Every patient usually hides a little something." "Why?" Belsky asked. "Because we don't want to know the truth."
* Completeness. Don't assume some symptom or other is due to aging or stress or the weather. Let the doctor decide.
* Cooperation. Various studies show that between 20 and 80 percent of all patients fail to follow their doctors' advice. One study found that only 22 percent of prescriptions were being taken according to directions; 31 percent were under- or over-used in ways that threatened health.
* Self-education. We can learn to look after our own minor ailments, and attempt to learn which are minor and which major -- requiring a doctor. An excellent book on this subject: "Take Care of Yourself: A Consumer's Guide to Medical Care" by Drs. Donald Vickery and James Fries (Addison Wesley). We can learn about medications by asking questions of doctors and pharmacists, by reading the inserts that come with some drugs and by reading the same sources doctors rely on: the "Physicians' Desk Reference" or other books found in most libraries. (The "PDR" has editions for both prescription and non-prescription drugs.)
* Self-care. We all need exercise, proper nutrition, proper rest and relaxation.
* Humanity. Assertiveness need not mean arrogance or lack of regard for doctors as human beings. Doctors should indeed be human, but can only be human. No one can be in good humor or possess saintly patience always.
Doctors must cope with fatigue, failures and death. They must deal with over-demanding and unreasonable patients. They must try to master countless new methodologies, yet still face uncertainty about many difficult and confusing symptoms and diseases.
It is not easy. "Dealing with my emotions can be difficult," Dr. Lorraine Gable, a young doctor in training at the Cleveland Clinic, told a reporter. "Walking that fine line can be hard -- being close enough to care while remaining objective. Sometimes I feel worse inside than I look outside, but I cope."
With understanding, we can help our doctors and help ourselves.
Coming Jan. 9: Top gripes of area patients.