Between 2003 and 2005, a team of researchers at Harvard asked over 1,000 cancer patients about their expectations for chemotherapy.
All patients surveyed had received a diagnosis of metastatic lung cancer or colorectal cancer four months earlier. These are some of the most difficult-to-treat conditions. Medical research says that, in these extremely challenging cases, chemotherapy can extend life by weeks or months but it is very unlikely to provide a cure.
That's what the science tells us -- but that's not what most late-stage cancer patients believed. The majority who elected to have chemotherapy believed there was a chance it would do something it wouldn't: Namely, provide a cure.
Sixty-nine percent of lung cancer patients and 81 percent of colorectal cancer patients gave responses "that were not consistent with understanding that chemotherapy was very unlikely to cure their cancer," the researchers report in this week's New England Journal of Medicine.
"I was really surprised," says lead study author Jane Weeks, a professor at Harvard Medical School. "Prior studies have suggested maybe a third of patients don't understand. Those studies are done in the optimal setting though, and this was the first to look at a big population. I thought the numbers were disturbingly high."
The most surprising finding in this study, though, might come from when the researchers looked at what the patients' thought of their doctors. The survey asked about how good their oncologists were at communicating about treatment.
Patients who rated their doctors as the very best communicators, the most open and honest, were the most likely to have the unrealistic, inaccurate expectations.
"This suggests that patients perceive physicians as better communicators when they convey a more optimistic view of chemotherapy," the authors conclude. "Similarly, the finding that patients, especially those with colorectal cancer, who were treated in integrated networks were somewhat more likely to understand that chemotherapy is not curative suggests that providers may be able to improve patients' understanding if they feel it is part of their professional role."
In a weird way, the health-care law may encourage doctors to make a rosier prognosis than the medical evidence warrants. Beginning this month, the health-care law tethers some hospital payments to patients' rankings of their hospital experience. The whole idea is to improve the patient's hospital stay. If patients are happier, the thinking goes, they're probably getting higher quality care.
"This is a cautionary tale," Weeks says. "I think everybody agrees that satisfaction alone is an incomplete measure of quality. It doesn't give you the whole story. I think this is an example of that."