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By Root 914 0

that guidelines aren’t engraved in stone; they can change quickly. A survey of one hundred recommendations from expert committees found that within a year 14 percent were reversed, within two years 23 percent were changed, and fully half were overturned at five and a half years. The American College of Physicians, representing internists in the United States, stated in 2010 that all of its guidelines, if not rewritten, should be automatically suspended after five years. This isn’t only because new and better data become available, but also because the composition of expert committees may change, and with this change, subjective judgments of “utility” or value may shift. Consider the guidelines that recommended the use of estrogen in virtually all postmenopausal women to prevent heart disease and dementia. These guidelines were overturned by new information from the Women’s Health Initiative trial. Yet some experts remain critical of this study and still endorse parts of the earlier guidelines, believing that for some women the “value” of hormone replacement may be enough to risk the downsides.

Clearly, more than assessments of scientific evidence, more than extracting numbers from clinical research, goes into guidelines and their recommendations. The conclusions drawn about what is “best” necessarily incorporate the second part of the Bernoulli formula, the “value” or impact of a treatment on quality of life. For every individual, this impact is always subjective and cannot be distilled from objective data.

We believe that all patients should be fully informed about their condition and then asked about their preferences. Such “informed patient preference” is placed by the Institute of Medicine of the National Academy of Sciences at the pinnacle of “quality care.” To be truly informed, patients should be aware of the gray zones in medicine. They must keep in mind that guidelines are not purely scientific and have a significant subjective component.

In 2010, researchers at the University of Michigan published the results of one of the first national surveys of medical decisions. The researchers contacted at random by telephone 3,100 adults age forty and older. Participants were asked a series of questions about common medical conditions they might have discussed with their doctors. A disturbing finding was that only half the patients stated they had been asked their preferences about starting medications for elevated blood pressure or a high cholesterol level. Although guidelines usually have fine print at the bottom asserting that the recommendations need to be molded to the preferences, values, and goals of the individual patient, we believe that this statement should be in large print, because patient preference is often not sought.

There is a creeping paternalism on the part of health care policy makers and insurance companies to standardize care based on guidelines. To be sure, standardization is appropriate, even essential, in some areas of medicine, like safety measures and emergency care. But where patient preferences are involved, standardization is misconceived. Yet, there are powerful incentives, often financial, to reward doctors when their patients receive treatment according to guidelines and penalize them when their patients deviate from the recommendations. Report cards that rate physicians according to compliance with guidelines are issued by insurers and often made public. We readily see how a physician might feel caught by these incentives and press patients to make choices that may not reflect either physician or patient preferences. As a patient, you want to know that your doctor is on your side, helping you to figure out an individual choice.

What if you and your physician don’t agree about what is the “best” choice? In such settings, as Dr. Jacques Carter put it, physicians “negotiate” with their patient. But the ultimate choice is always the patient’s, because it is the patient who either enjoys the benefit of a treatment or suffers its side effects, experiencing each within the context of his