The Hedgehog Review: Vol. 15, No. 1 (Spring 2013)
Reprinted from The Hedgehog Review 15.1 (Spring 2013). This essay may not be resold, reprinted, or redistributed for compensation of any kind without prior written permission. Please contact The Hedgehog Review for further details.
Over the last half-century and more, as responsibility for decisions about medical care shifted from physicians to patients, “informed consent” emerged as a central ethical principle. Agreement to treatment, under this principle, is predicated on a free choice made by a competent patient. Being “informed” means not only that the risks and benefits of treatment have been fully explained but also that the patient fully understands them. While competence has been a key focus, the issue of understanding is also important: can patients unaware of their real situation make free and informed decisions?
In October 2012, the New England Journal of Medicine published a study, “Patients’ Expectations about Effects of Chemotherapy for Advanced Cancer,” that highlights just that question. The study asked some 1,200 people with Stage IV lung or colorectal cancer who had decided to receive chemotherapy what they expected from their treatment.
To appreciate the findings, it helps to know that by Stage IV both cancers have the grimmest prognoses. For both, the five-year survival rate is under 10 percent, and the median survival time less than a year. But when asked whether chemotherapy could cure them, only 31 percent of Stage IV lung cancer patients, and 19 percent of colorectal cancer patients, answered–accurately–that it could not. Many respondents thought a cure was not only possible, but probable. Patients could rate a cure as “very,” “somewhat,” “a little,” or “not at all” likely. A full quarter of those with lung cancer chose “very likely”; another quarter, “somewhat likely.” (For colorectal cancer, possibly because it is less well known, misconceptions were even more common.)
This belief is remarkably consistent across demographic groups. Sex, age, income, and (surprisingly) level of education made no difference. Not even treatment failure reduced participants’ confidence in future treatments. The authors report: “patients who were surveyed after the end of first-line chemotherapy were no less likely to report that chemotherapy could be curative.”
What accounts for such common misconceptions? The study could not answer this question directly, but the data implicate both patients and physicians in contributing to unrealistic expectations. One variable that did affect accurate response was doctor-patient communication. Paradoxically, the better respondents rated communication with their doctors, the more likely they were to be wrong about their chances–suggesting, in the authors’ words, “that patients perceive physicians as better communicators when they convey a more optimistic view of chemotherapy.”
Of the total cohort from which the study population was drawn, a very large majority (94 percent) opted to receive chemotherapy. Chemotherapy is not curative. That so many patients thought it was, however they came to that expectation, would seem to undermine the “informed” in their informed consent to treatment.