Image credit: Flikr, Juni A.

Metastatic (stage IV) colon cancer and lung cancer are fatal incurable illnesses. That doesn’t just mean they are life-threatening. A fatal incurable illness is one which has zero survivors. You don’t know anyone who had metastatic colon or lung cancer who survived and is no longer ill.

Chemotherapy is still occasionally used in such cases and sometimes can prolong life by a few months. Chemotherapy might also help temporarily alleviate some of the symptoms caused by the cancer. But what chemotherapy never does in these cases is cure the disease. The distinction is important because chemotherapy itself frequently has serious and uncomfortable side effects and patients who are considering undergoing it should understand the benefits they may gain.

A disturbing study in this week’s issue of The New England Journal of Medicine suggests that many terminally ill patients misunderstand why they are receiving chemotherapy. The study was a survey of over 1,100 patients with a recent diagnosis of stage IV lung or colon cancer who had opted to receive chemotherapy. The survey asked several questions about their expectations of chemotherapy. One such question was “After talking with your doctors about chemotherapy, how likely did you think it was that chemotherapy would cure your cancer?” Response options were “very likely,” “somewhat likely,” “a little likely,” “not at all likely,” and “don’t know.”

“Not at all likely” is the only response that conveys an accurate understanding of what chemotherapy can do for these patients. Yet 69% of patients with lung cancer and 81% of colon cancer patients chose one of the first three responses, reflecting mistaken expectations of their treatment. Though previous studies suggested that some patients are mistakenly optimistic in the face of a terrible prognosis, the very high fraction of patients in these studies who apparently believed they might be cured was surprising.

What could account for this? An accompanying editorial ponders the possibilities. Might the oncologists not be giving patients an honest explanation of their prognosis? Prior studies show that most oncologists give bad news honestly, so that is not likely to account for the majority of patients misunderstanding the goals of treatment. Perhaps patients actually know that a cure is impossible and have discussed this with their doctors and their families but are reluctant to share this painful realism with a researcher who is a stranger. Perhaps many patients heard the bad news and chose not to believe it.

Certainly some selection bias is involved. The study, after all, interviewed only patients who chose to undergo chemotherapy. That would include whichever patients were most likely to ignore bad news or exaggerate the possible benefits of treatment. Those who were mostly likely to accept bad news and minimize the possible benefits of treatment were the most likely not to have pursued chemotherapy and would not have been included in the study.

The distressing possibility is that many of the patients surveyed are fooling themselves. In other facets of life self-deception might be beneficial, or at least harmless. (“I look terrific.” “I think I’ll do great in this interview.”) But in this case patients with limited time are choosing to spend that time in healthcare facilities experiencing side effects instead of at home (or on vacation) with loved ones.

One final worrisome finding is that the patients who reported better scores for how well their physician communicated with them were less likely to give accurate responses for the goals of chemotherapy. That means that patients who best understood that chemotherapy could not cure them reported that their physicians were worse communicators than patients who misunderstood their likelihood of cure. Does telling bad news inevitably strain the physician-patient relationship? Do patients bond best with physicians who misinform them with optimism or allow them to misunderstand important aspects of their care?

As patient satisfaction surveys begin to play a larger role in physician compensation we may ironically find that doctors will be increasingly paid to cater to patients’ unstated desire for misinformation.

Learn more:

Many Terminal Cancer Patients Mistakenly Believe A Cure Is Possible (NPR Shots)
Study: We overestimate how much medicine can do (Washington Post, Wonkblog)
Patients’ Expectations about Effects of Chemotherapy for Advanced Cancer (New England Journal of Medicine)
Talking with Patients about Dying (New England Journal of Medicine editorial)