A majority of patients with advanced lung and colorectal cancer harbor the fundamental misperception that treatments that can extend life and alleviate pain might also cure them, according to a new study led by Dana-Farber Cancer Institute researchers.
The finding highlights a breakdown in the difficult and important conversations physicians have with patients about their prognosis, say the authors.
But the study, published Wednesday in the New England Journal of Medicine, couldn’t pinpoint where it occurs: whether patients receive unclear information from a physician or fail to fully comprehend what they are told, or whether there is a kind of clinical “collusion” in which the discussion moves rapidly from a dire prognosis to a focus on what can be tried, leaving patients with an inflated sense of hope.
“The issue here isn’t really over-optimism, but instead thinking that a treatment offers a chance of cure when in fact it doesn’t,” Dr. Jane Weeks, director of the McGraw/Patterson Center for Population Sciences at Dana-Farber wrote in an e-mail. “This deprives these patients of the opportunity to weigh the risks of chemotherapy, including the chance of some rough side effects, against the true benefits, perhaps some symptom relief and a few months longer life but no chance of cure.”
Led by Weeks, a team of researchers surveyed 1,274 patients treated at hospitals and clinics nationwide, or their surrogates if the patients were very ill or had passed away. They asked patients with advanced lung and colorectal cancer how likely it was that chemotherapy would help them live longer, cure them, or help with other problems related to their disease. They also asked the patients to judge how well their doctors listened to them, explained options, and provided information, including the up- and down-sides of any treatment.
They found that 69 percent of patients with metastatic lung cancer and 81 percent of patients with advanced colorectal cancer reported that their chemotherapy might be curative, despite the fact that the drugs were extremely unlikely to cure their cancer.
Strikingly, those patients who rated their physicians as worse communicators were more likely to have a realistic view of the potential benefit of their chemotherapy. That raises the possibility that patients rate doctors as better communicators simply because they provide a more optimistic message.
Dr. Eduardo Bruera, chair of the Department of Palliative Care and Rehabilitation Medicine at the University of Texas MD Anderson Cancer Center, said he is working on a study in which patients view videos of doctors giving messages with varying amounts of optimism, to examinehow good or bad news may affects patients’ perceptions of the doctor.
“A bearer of good news might be seen in a more welcoming way; that might explain why sugar-coating might make people more liked by their patients,” Bruera said. He said that it was far more important for a physician to convey the facts of a situation than to be liked by a patient, but added that even when physicians are quite clear about a patients’ prognosis, denial may be a way of coping with scary facts.
Dr. Deborah Schrag, a colorectal cancer specialist at Dana-Farber and co-author of the study, said the researchers were also interested in examining whether where doctors worked might affect the way the message was communicated.
“We had this hypothesis when it comes to giving bad news: Doctors who work at an integrated health care network, they’re not an independent practice, they’re more free to disclose the unvarnished truth, without worrying about the ramifications of, ‘If I’m not super cheerful and positive and optimistic, my patients would not like me,’ ” Schrag said.
The study found that colorectal cancer patients treated by doctors who worked in health maintenance organizations were more likely to be aware that their chemotherapy would not cure them.
Oncologists said it was crucial to find where and why the misunderstanding takes root so that doctors can be sure their patients are making informed decisions.
“You have to provide the information about whether a situation is curable or not curable, and what the odds of doing well are for a long period of time,” said Dr. David Ryan, chief of hematology/oncology at Massachusetts General Hospital, who was not involved in the study. “But you also have to provide hope, and it can be difficult sometimes to convey that difficult information and also provide hope.”
Hope and realism have both been important for Nila Webster, 49, of Revere, who said that when she was diagnosed in July 2010 with advanced lung cancer, her oncologist instantly made it clear to her that the disease could not be cured. But within moments of meeting, he also told her of the best-case scenario -- that some patients could live for years on chemotherapy and that he hoped very much she would be one of them.
“I know this is incurable and I know that this form of chemotherapy has a limited lifespan,” Webster said. “I know that, but what a wonderful gift he gave me to articulate the best-case scenario. It’s sort of something to aim for. ... But that doesn’t mean that I’m not aware this chemotherapy could fail at any time.”
Webster said she has taken the opportunity to discuss with physicians, family, and friends her wishes for end-of-life care, while at the same time doing everything she can to stay healthy and live a good life.Carolyn Y. Johnson can be reached at email@example.com. Follow her on Twitter @carolynyjohnson.