Doctors and their patients with advanced cancer often have misunderstandings about prognosis, according to a new study.
The vast majority of the patients didn’t know that their doctors held different opinions about how long they might live.
Discordance almost always leans toward patients being overly optimistic.
“We’ve discovered two important things happening between oncologists and patients with advanced cancer,” says coauthor Ronald M. Epstein, professor of family medicine, psychiatry, and oncology at the University of Rochester Medical Center.
“First, some patients might know the doctor’s prognosis estimate but the patient chooses to disagree, often because they believe other sources,” Epstein says. “And second, some patients think that their doctor agrees with their opinion about prognosis but, in fact, the doctor doesn’t.”
The findings appear in JAMA Oncology.
“When people think they’ll live a very long time with cancer despite evidence to the contrary, they may end up taking more aggressive chemotherapy and agreeing to be placed on ventilators or dialysis, paradoxically reducing their quality of life, keeping them from enjoying time with family, and sometimes even shortening their lives,” Epstein adds. “So it’s very important for doctors and patients to be on the same page.”
Too much hope can extend end-of-life suffering
Researchers surveyed 236 patients with stage 3 or 4 cancer whose doctors “would not have been surprised” if they died within a year and half of whom died within 16 months. Fewer than five percent would be alive in five years, according to medical evidence.
The 38 oncologists who treated these patients independently completed similar questionnaires to measure their own opinions about the patients’ survival. Doctors were asked: “What do you believe are the chances that this patient will live for two years or more?” Whereas the patients were asked: “What do you believe are the chances that you will live for two years or more?” Additional survey questions gauged whether patients knew their prognosis opinions differed from their doctors, and to what extent treatment options were discussed in the context of life expectancy.
Among the 236 patients, 68 percent rated their survival prognosis differently than their oncologists. In nearly all cases the patients were more optimistic than their doctors. Of the 68 percent, only one in 10 realized that their opinions differed from their oncologists.
The study results highlight a difficult communications issue that arises often when the conversation is about cancer. Discordance almost always leans toward patients being overly optimistic, Epstein says.
“Of course, it’s only possible for doctors to provide a ball-park estimate about life expectancy—and some people do beat the odds,” Epstein says. “Positive thinking by patients can improve quality of life. But when a patient with very advanced cancer says that he has a 90-100 percent chance of being alive in two years and his oncologist believes that chance is more like 10 percent, there’s a problem.”
How to talk about death before it’s too late
The challenge, according to the researchers, is that talking about a cancer prognosis is not a straightforward exchange of information. It occurs in the context of fear, confusion, and uncertainty, and in the best cases it should be carried out in several conversations about personal values and treatment goals.
But when doctor-patient communication is poor, it can result in mutual regret about end-of-life circumstances. For example, nearly all of the survey participants said they wanted to be involved in treatment decisions. And 70 percent said they preferred supportive care at the end of their lives as opposed to aggressive therapy—but, the study authors point out, making an informed decision requires knowing when death is approaching.
Another important finding was that non-white patients were much more likely than white patients to have expectations about their prognosis that were out of sync with their doctors. However, the sample of non-white patients was small and included individuals from many different racial groups, which limited the researchers from drawing any conclusions.
The study had other limits, too, according to the authors. Researchers say they do not understand why discordant patients didn’t know their oncologists’ opinions and why it differed by race. The scientists believe several factors could have been at play, such as patients not wanting to discuss prognosis, or having poor recall, or avoiding talk of death because of personal beliefs.
“Understanding how best to support timely, compassionate, and clear communication about prognosis in advanced illness, including cancer, is a public health priority,” says lead author Robert E. Gramling, a former associate professor at URMC who recently joined the University of Vermont Medical Center. Gramling had been research co-director of URMC’s division of palliative care.
Additonal coauthors of the paper are from the University of Rochester and Wilmot Cancer Institute, the University of California, Davis, and Tulane University.
Source: University of Rochester
