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Heart Failure Patients Miscalculate Life Expectancy

Heart Failure Patients Miscalculate Life Expectancy
Heart Failure Patients Miscalculate Life Expectancy


Duke Health News Duke Health News

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

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

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.

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