At least two thirds of people with advanced cancer in a new survey believed the chemotherapy they're receiving might cure them, even though the treatment is only being given to buy some time or make them comfortable.
"Their expectations are way out of line with reality," Dr. Deborah Schrag of the Dana-Farber Cancer Institute in Boston told Reuters Health.
Her team reports in the New England Journal of Medicine that 69 percent who were terminally ill with lung cancer, and 81 percent with fatal colorectal cancer, did not understand that their chemotherapy was not at all likely to eliminate their tumors.
When lung cancer or colorectal cancer has spread, chemotherapy may extend survival for weeks or months at a cost of some substantial side effects.
Perhaps ironically, the patients who had the nicest things to say about their doctors' ability to communicate with them were less likely to understand the purpose of their chemotherapy than patients who had a less-favorable opinion of their communication with their physician.
"This is not about bad doctors and it's not about unintelligent patients," said Schrag. "This is a complex communication dynamic. It's hard to talk to people and tell them we can't cure your cancer" because doctors find it uncomfortable to hammer home grim news and patients don't want to believe it.
"If patients actually have unrealistic expectations of a cure from a therapy that is administered with palliative intent, we have a serious problem of miscommunication that we need to address," write Drs. Thomas Smith and Dan Longo of Johns Hopkins University School of Medicine in a commentary accompanying the study.
"This may explain why two months before death, half of all patients with lung cancer have not heard any of their doctors use the word 'hospice,'" they write.
TONING DOWN OPTIMISM ‘HARD'
The study "suggests we need to spend a little more time" explaining the hard facts to patients, said Dr. Hossein Borghaei, an oncologist at the Fox Chase Cancer Center in Philadelphia, who was not involved in the research. "Medical oncologists are going to need to tone down their optimism and enthusiasm, but it's hard."
The findings are based on interviews with 1,193 patients, or their surrogates, who had been diagnosed with cancer that had spread. All were receiving chemotherapy.
"The fact that 20 to 30 percent of respondents recognized that chemotherapy was not at all likely to cure them shows that at least some patients were able to accept this reality and to acknowledge it to an interviewer," the researchers wrote.
"These are not trivial issues. Chemotherapy near the end of life is still common, does not improve survival, and is one preventable reason why 25 percent of all Medicare funds are spent in the last year of life," write Smith and Longo.
"There is a lot of harm in not having patients understand the finality of the disease," said Borghaei. Chemo drugs "are very powerful, they have a lot of side effects, the chemotherapy is going to harm you more than it helps you, and it can actually shorten your life. All of this should be taken into account."
Smith and Longo said the results are probably due, in varying degrees, to patients not being told their disease is incurable, patients not being told in a way that let them understand, patients choosing to not believe the message, or patients being too optimistic. "It is probably a combination of all four possibilities," they said.
Borghaei said the study "doesn't take into account what patients bring to the table when they are diagnosed with incurable cancer."
Many patients insist that they are going to beat the odds once they hear the news.
"What are you supposed to do, stand in front of someone with advanced disease and argue with them?" said Borghaei. "It's not productive. But I hear that all the time, especially from the younger patients."
"I think it serves as a stark reminder to physicians: just slow down, maybe take a few minutes to realize how hard this is," said Schrag. "Recognize that this is not one conversation, but typically a series of conversations to see if they've understood it, and how they're acting on it."
When a cure is extremely unlikely, "We have to make sure people have the opportunity to plan and prepare for what is much more likely to happen," she said.