Your Medical Mind_ How to Decide What Is Right for You - Jerome Groopman [27]
Why is it subjective, a value judgment, rather than a matter of a clear black-and-white answer? Because, Hayward continues, for many treatments there exists a substantial “gray area of indeterminate net benefit.”
Hayward mentions cholesterol levels as one example of such a gray area. We examined the “net benefit” of treatment in Susan Powell’s deliberation about taking a statin medication. “Net benefit” means the potential gains from the treatment minus the downsides. After seeing all the data, particularly the “number needed to treat,” she didn’t believe the net benefit was worth it, given the risks statins entail. In effect, Susan set a different cutoff for herself from the one some experts would apply, not because she was “health illiterate” or “irrational,” but because she has a different subjective assessment from that of the experts who wrote the recommendations. We agree strongly with Hayward that within the substantial gray area of indeterminate net benefit, “physicians should defer to an individual patient’s preferences in choosing whether or not to intervene.”
How do recommendations for “best practice” come about? Committees of specialists are convened to draw up guidelines that aim to identify “best practice” for a certain medical condition. The principle is that guidelines should be drawn from the “best” evidence and crafted by the “best” scientific experts in the field. These guidelines are a key component of so-called evidence-based medicine, the idea that clinical practice should be based solely on the results of scientific studies. The recommendations are presented not only to physicians, but directly to patients, in informational brochures, on the Internet, and in the media. Guidelines therefore have become one of the most powerful forces on patient decisions, since the very language used to describe their content is “best” practice. Advocates of guidelines assert that both doctors and patients should accept their recommendations as the default option. Some physicians and health policy planners conclude that patients who deviate from expert recommendations aren’t adequately informed or are “irrational.”
Doctors and patients certainly should consult guidelines since they provide considerable background information about disorders and treatment options. But, it’s important to recognize that guidelines aren’t strictly “scientific.” They incorporate biases and subjective judgments. Experts select which clinical studies to use and which to discard when they formulate their recommendations. Further, all studies have limitations. They provide results from statistical averages of selected groups of study subjects. These averages may not be applicable to a particular patient. Even the most rigorous, inclusive studies cannot address all the variables of age, gender, genetics, lifestyle, diet, and concurrent medical conditions that make us individuals and often influence how effective a particular treatment will be or what sorts of side effects we might experience. Many studies exclude the elderly or those who have coexisting common medical problems. When making their final recommendations about the need for treatment, experts also apply their subjective judgment about how much risk is worth taking in order to obtain a certain benefit. Concerns have also been raised by the Institute of Medicine about potential conflicts of interest, since some experts who write guidelines are consultants to drug and device companies or private insurers. Finally, guideline committees have an imperative for consensus and present their recommendations with one voice. As a result, their conclusions usually fail to mention dissenting opinions that may have arisen among committee members.
It’s also important for patients to realize