end of life care

A Lot of Cancer Patients Aren’t on the Same Page As Their Doctors

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Imagine this scenario: Someone you care about has advanced cancer. In a moment of morbid forthrightness, you ask them how likely they think it is they will still be alive in two years. “I’m pretty confident,” they say. “Maybe 80 percent.” Then you corner their oncologist and ask them the same question about their patient. After trying to evade for a bit, the oncologist answers honestly: “Probably one in four.”

What would that tell you, that patient and doctor are on such different pages about the prognosis? For one thing, it would be a sign of some sort of communication problem: Either patient and doctor aren’t talking about this subject, or your friend, for understandable reasons, is refusing to pick up what their doctor is putting down. It would also suggest that in terms of the searingly difficult questions that come with an advanced cancer diagnosis, there could be some turbulence afoot: If patient and doctor can’t agree on the prognosis, it could lead to bad decision-making when it comes to treatment, particularly the fraught question of when to switch from aggressive to palliative care.

This isn’t some far-fetched scenario, of course — we know that in the U.S., a lot of people’s end-of-life care is subpar, and it’s often subpar because of a lack of communication and because of unrealistic expectation about prognoses. That’s part of the reason why a team of doctors and public-health researchers led by Robert Gramling of the University of Vermont Medical Center decided to interview a bunch of cancer patients and their oncologists, in the hopes of better understanding the prevalence of mismatches between patient and doctor explanations.

For their study, just published in JAMA Oncology, Gramling and his colleagues interviewed 236 patients with advanced cancer in Rochester, New York, and Sacramento, California, as well as their oncologists. Among other questions, they asked what each member of each pair thought the patient’s two-year survival prognosis was, with seven options: 100 percent, about 90 percent, about 75 percent, about 50 percent, about 25 percent, about 10 percent, and 0 percent. Patients and doctors were considered to be on the same page if they were within one category of each other. Patients were also asked whether they thought their view of their prognosis different from their doc’s, to help researchers understand whether the disconnects stemmed from a lack of communication or patients — again, understandably — refusing to accept their situation.

The results were discouraging. The researchers found that 68 percent of the patients “rated their 2-year survival prognosis discordantly from their oncologists,” and that 89 percent of them didn’t know there was a mismatch. They also found some evidence to support past research suggesting that when a patient is a member of an ethnic minority group, it’s more likely for these miscommunications to occur: While income, education, sex, and various other factors didn’t affect the likelihood of miscommunication in this study, race did, with 95 percent of nonwhite patients expressing prognostic beliefs that didn’t match up with their oncologists, while just 6 percent did.

As always, there are limitations to what you can determine from just one study. But if similar numbers hold up in different patient populations, this is a sign that the medical profession is doing a really poor job communicating absolutely vital — as in literally life-and-death — pieces of information to a very vulnerable set of patients.

Cancer Patients and Doctors Aren’t Communicating