Ambulatory patients with heart failure tend to substantially overestimate their life expectancy, especially those who are younger or who have severe disease, according to the findings of a survey.
Their misperception could “fundamentally influence medical decision making regarding medications, devices, transplantation, and end-of-life care,” said Dr. Larry A. Allen of Duke Clinical Research Institute, Durham, N.C., and his associates.
The researchers surveyed 122 patients with a broad spectrum of heart failure severity to determine their understanding of their prognoses. “Despite advances in care, the prognosis for patients with symptomatic HF remains poor, with a median life expectancy of less than 5 years,” they noted.
Most of the study subjects had longstanding chronic heart failure and comorbid conditions such as hypertension and diabetes. The sample was racially diverse and included a large number of elderly people.
The patient predictions were compared with those obtained using the Seattle Heart Failure Model, a prognostic tool that calculates life expectancy based on clinical characteristics, medications, device use, and results of diagnostic testing.
A total of 9% of the subjects believed their heart failure would be cured, and another 51% believed they would always have heart failure but nevertheless would have a normal life expectancy. Only 36% indicated that heart failure would likely shorten their lives.
A total of 63% of patients markedly overestimated their life expectancy, thinking they'd survive a median of 40% longer than predicted by the clinical prognostic tool, Dr. Allen and his associates said (JAMA 2008;299:2533–42).
Patients also predicted they would live a median of another 13 years. In contrast, the clinical model predicted a median survival of 10 years. The model came close to predicting actual survival rates at 1 and 3 years of follow-up. Mortality at 3 years was 29%.
The younger the patient, the longer they estimated their life expectancies to be. However, the model predicted similar life expectancies across all age groups.
Similarly, patients who had advanced symptoms gave themselves the same prognosis, as did patients with minimal symptoms, predicting great longevity despite the objective severity of their disease.
There was no difference in the accuracy of patient predictions between the 45 patients who reported they had discussed a prognosis with their clinicians and the 76 patients who said they had not.
The study could not address the reasons for the disconnect, but it seems likely that inadequate communication between providers and patients plays a role. Also, “individuals' predictions of longer life expectancy for themselves may simply reflect hope,” they added.
Whatever the reason, patient perception of prognosis warrants further attention, because it “may refine decision making around resuscitation preferences, adherence to medical therapy, and consideration of advanced HF therapies such as implantable cardioverter-defibrillators, cardiac transplantation, or mechanical cardiac support,” Dr. Allen and his associates noted.
In an editorial accompanying the report, Dr. Clyde W. Yancy agreed. “Another reason precise awareness of survival may be important is embedded in the 'time trade-off' construct,” noted Dr. Yancy of the heart and vascular institute at Baylor University Medical Center, Dallas. “Knowing that survival is limited, patients with advanced disease might opt for comfort measures or an enhanced quality of life, even at the expense of shortened survival” (JAMA 2008;299:2566–7).
Patients with advanced disease might opt for comfort measures over enhanced survival. DR. YANCY