By Duke Medicine News and Communications

DURHAM, N.C. – Many patients with heart failure -- especially younger ones and those with more severe disease -- significantly overestimate how long they are going to live, say Duke University Medical Center researchers.

"It's a bit of a puzzle," says Larry Allen, M.D., a cardiologist at Duke and the lead author of the study. "As physicians, we know how important it is to talk with our patients about end of life issues, but this study suggests we may need to take another look at how we might do that better."

The research showed that among 122 patients with heart failure enrolled in the Duke University Heart Failure Disease Management Program, the patients, on average, believed they would live about 40 percent longer than what accepted survival models predicted.

The study appears in the June 4 issue of the Journal of the American Medical Association

While the reasons underlying the phenomenon aren't clear, scientists say the finding may hold important implications about options such as high-end medical devices, transplantation or palliative care – important decisions that have enormous impact on patients' quality of life and clinical outcomes.

According to the American Heart Association, about five million people in the United States have heart failure, a condition in which the heart becomes weak and is no longer able to pump as much blood as the body needs. Despite advances in treatment options, the prognosis for patients with symptomatic heart failure is grim: Median life expectancy is less than five years.

Michael Felker, M.D., the senior investigator of the study and a member of the Duke Clinical Research Institute, says the finding is important on many levels.

"With the increasing availability of potentially life-saving but costly therapies, patients need to be fully aware of their prognosis in order to make appropriate decisions about their care. Our data suggest that is not happening, and that many heart failure patients do not have an accurate understanding of their likely survival," says Felker.

When researchers asked the patients to address the eventual outcome of their disease, 9 percent said they thought they would be cured, 51 percent said they thought they would have normal life expectancy and 36 percent said they thought heart failure would shorten their lives.

On average, the patients said they thought they would live an additional 13 years. But the widely accepted Seattle Heart Failure Model suggested that the patients would only live an additional 10 years, on average. Patient predictions were highly variable, ranging from one to 54 years, and had almost no correlation with individual model predictions.

The data showed that patients appeared to predict their life expectancy without regard to the severity of their illness; those with advanced disease were just as likely to predict a longer than expected life as those with less severe disease. The researchers also found that prior discussions with their clinicians (only about a third of them had talked with a clinician about their prognosis) didn't seem to make any difference in the degree to which they were able to realistically predict outcomes. They also discovered that there was no relationship between a higher estimate of longevity and improved survival.

"Even though we didn't find any difference between patients who had spoken with their caregivers about end of life and those that had not, that doesn't mean that better communication wouldn't help change things," says Allen. "Patients are only able to take in so much information at one time. Maybe we need to revisit end of life issues several times over and check in to make sure important messages are not just stated, but understood, as well. It's a very complex issue, and one that needs more study."

Researchers from Duke who contributed to the study include James Tulsky, Christopher O'Connor, Margaret Bowers and Gwen Dodson. Additional co-authors include Wayne Levy, of the University of Washington, who developed the Seattle Heart Failure Model; Jonathan Yager, from Cardiac Care Associates in Fairfax, Va.; and Michele Jonsson Funk from the University of North Carolina at Chapel Hill.