“Previous research shows that patients, families and clinicians tend to either avoid prognosis-related conversations altogether or discuss prognosis in unbalanced ways,” says first author Robert Gramling, M.D., M.Sc., Holly and Bob Miller Chair in Palliative Medicine at the University of Vermont.
He and colleagues at the University of Rochester and the University of California Davis School of Medicine conducted a large clinical trial to test a multi-modal intervention to support communication in advanced cancer. At entry into the study, they asked patients and their oncologists to rate their expectations for the patient’s two-year survival probability. They also asked patients to rate what they believed their oncologists thought about their prognosis.
Gramling and the research team found that more than two out of three patients held substantially more optimistic ratings than their oncologist and that the vast majority of them did not know that their rating differed at all from their oncologist’s.
In many fields of medicine, he explains, patients, families and their doctors often craft an unwritten social contract to maintain unbalanced positivism, sometimes making it tough to find space for meaningful prognosis discussions as the illness progresses.
“Our study reinforces the importance of clear and compassionate prognosis communication in advanced illness, but we must be aware that our data do not speak to what actually happens in clinical encounters between patients and their oncologists that leads to our observed differences in perceptions of prognosis,” Gramling cautions.
“We need to better understand where, when and how to support high quality prognosis communication,” says Gramling.
The researchers also found that patients who self-identified as Black or African American were at substantially higher risk of unknowingly holding optimistically discordant opinions about their prognosis.
“Evidence is mounting about racial disparities in end-of-life care; our findings might point to an important piece of that puzzle and a promising area of work to improve healthcare for everyone,” Gramling adds.
The study’s authors conclude that their report “supports the urgent clinical and societal need to better understand what it means to communicate well about prognosis to achieve treatment that honors patients’ values, preferences and wishes.”