Helping Patients Become "Competent Inquirers"

Which of my patients is expressing autonomy? A) a thirty-six-year-old woman who refuses amniocentesis after reading its risks on Web MD; B) a woman with very high cholesterol who declines a statin on her naturopath's advice; C) a young man with one week of weight loss and diarrhea who Googled his symptoms and thinks he has colon cancer; or D) a professor so overwhelmed by all the opinions he's received about his adrenal mass that he asks me to make the treatment decision. The answer? All of the above—even the professor, who has decided that he can trust his doctor to synthesize the relevant information. Health information used to come primarily from doctors. Now, multiple sources bombard us—magazines, television, radio, advertisements, books, the Internet, and billboards, as well as scattershot opinions from our physicians, our chiropractors, our relatives, our friends, even strangers. Much is uninformed, unformed, or slanted. As consumers, how do we determine which sources are reliable?

I have always had mixed feelings about these "patient inquiry" moments. On the one hand, I support my patients' motivation to inform themselves beyond what I tell them; on the other, I am leery of the glossy ads proffering unproven miracle cures. I find myself resisting this challenge to my authority. I am, after all, the one with years of training and experience. Often I don't have time to go into intricate detail about a treatment plan. Like many doctors, I sometimes view patients who question my reasoning as demanding or disagreeable. After reading Rebecca Kukla's article, however, I have reconsidered.

In "How Do Patients Know?" Kukla addresses autonomous inquiry in laypeople's medical decision-making. We should not expect patients to passively receive medical information, she tells us. They should be "competent inquirers"—that is to say, able to assess whether information is reliable and willing to adjust their ideas as new evidence emerges. She describes how competence in questioning develops from a combination of factors: basic health literacy, a strong relationship with one's physician, access to information as well as to experts who can assess one's medical situation, and the capacity to question the legitimacy of information.

In some cases, patients rely so heavily on outside sources that they no longer value their physicians' opinions. Kukla cautions against this. Doctors, informed by experience, may be able to see the "moral contours" of a situation more clearly than the patient. For example, an elderly man with advanced lung cancer should consider his oncologist's opinion regarding whether to treat it because the oncologist has seen how other elderly patients fared in similar situations, not only with regard to treatment side effects, but also in terms of emotional impact on patient and family. When the doctor is a resident physician or early in her career, however, there may be no such advantage.

Kukla suggests that it is in our own best interest as physicians to accept that patients have become active negotiators in their care. When a patient develops a new symptom, we can ask not only what he thinks it may be, but also what sources inform him—a Web site, a magazine article, another physician's or a family member's opinion. Such information can allow patient and doctor to assess the reliability of these sources together. We both may learn something new. Ultimately, such discussions can give our patients not only an understanding of our recommendations, but the tools to decide whether to accept them.

Kukla also urges us to appreciate how shared storytelling on the Internet can benefit patients. Many sites address living with particular diseases and can provide invaluable information for medical decision-making—for example, how a disease can affect one's daily activities and emotional health, experiences with new treatments, honest appraisals of local doctors, and inspiring stories from survivors. Such information is not ordinarily part of the clinical encounter.

Soon after reading this article, I had a chance to put Kukla's recommendations into practice. One of my patients, a fifty-nine-year-old man with chronic back pain, inevitably brings to his appointments...