WHO SHOULD decide what to do when you face a serious illness that does not have a clear-cut solution? Consider prostate cancer, for which different treatments might have similar outcomes, or certain other cancers, for which chemotherapy might extend a patient's survival time, but at a high cost to quality of life.
Once upon a time, the answer was simple -- doctors made the decisions. They gave you the diagnosis (if they chose to) and they told you what to do about it. Your job was merely to follow "doctor's orders."
Fortunately, those days are gone. Starting in the 1970 s, a long-overdue patient's rights movement arose, exemplified by the recognition of living wills to enable people to refuse life support and by requirements that patients give their informed consent before undergoing treatment or participating in research. In effect, the relationship between doctors and patients was renegotiated to incorporate patients' wishes into medical decisions. Doctors were expected to offer advice on the basis of their expertise, but patients would decide whether to take it.
But over the past decade or so, that admirable model has changed into something quite different. Doctors have become vendors and patients consumers operating in a medical marketplace. Patients are now expected to take responsibility for their healthcare decisions, choosing and designing their own treatments, sometimes with little or no direction from their doctors. To be sure, doctors are supposed to present the options, along with the pros and cons of each, but they're not supposed to decide which is best for the patient. If patients ask what they should do, doctors often retreat to generalities: "I've seen some patients do very well with option A."
In just a few decades, we've swung from one extreme to another. The shift is reinforced by various "consumer-directed" health system reforms that place more of the financial burden on individuals. Patients are sovereign purchasers who choose from a menu of options put before them by their doctors. They search the Internet for information and compare notes with friends to help make their choices. For their part, doctors lean over backward to be neutral.
Adding to doctors' hands-off attitude is the fact that managed care made some people suspicious ; they worried that doctors (or the health plans for which they worked) might have a financial interest in recommending a particular course of action. One way for doctors to deal with that concern was to be non-directive. Also, primary-care doctors came under great pressure to see patients quickly, and it takes less time simply to present options than to evaluate them and make decisions jointly. When specialists are involved, primary-care doctors may rely on them to guide decision making, even though there may be several specialists involved and no coordination among them.
Yet deciding how to treat prostate cancer is not the same thing as shopping for groceries. When patients have to take responsibility for important medical decisions, they often feel abandoned and anxious. If the choice turns out badly, they may face self-recrimination as well as worsened disease. Sick people need to be able to rely on their doctors not just for an expert recital of choices, but also for advice about what to do, and doctors should accept responsibility for the outcome. I have no nostalgia for the old days of paternalism, but we can do a lot better than casting patients adrift in a medical mall.
As patients, your best bet is to ask your doctors what they would do in your place, and persist until you get a straight answer. If nothing else, that forces doctors to imagine being in your shoes, at least for a moment, and it may cause them to think more deeply about what you should do.
Good doctors offer judgments based on long experience seeing many patients in similar circumstances, and on their evaluation of whatever published evidence is available. You can always choose not to accept their advice, but you should have the benefit of hearing it. When you are seriously ill, you need a doctor, not a vendor. Doctors owe it to you to tell you what they think you should do.
Dr. Marcia Angell, a senior lecturer at Harvard Medical School, is a guest columnist.