Abstract

Background: Heart failure (HF) has an overall poor prognosis, with only half of patients surviving more than 5 years after diagnosis. Although it is recommended that all patients with HF have advance directives (ADs) in place before the end of life is imminent, the use of ADs in these patients has not been well studied. Methods: We prospectively enrolled all Olmsted County residents presenting with active HF from October 2007 through October 2011 into a longitudinal community cohort study which included an echocardiogram and administration of health status questionnaires at enrollment. Information from ADs completed prior to enrollment was manually abstracted from the patient’s medical record. Results: A total of 608 patients were enrolled during the study period (mean age 74.0 years, 54.9% male, 49.9% with preserved EF [EF≥50%], 65.3% NYHA functional class 3 or 4). Mortality was high; 164 (27.0%) patients died after a mean follow-up of 1.8 years with estimated 1-year mortality of 14.3%. At the time of enrollment, only 249 (41.0%) patients had ADs, and they were completed an average of 3.3 years prior. Although most ADs appointed a proxy decision-maker (91.1%), less than half addressed patient wishes regarding use of cardiopulmonary resuscitation (41.4%), mechanical ventilation (38.7%), administration of artificial nutrition (38.6%), or hemodialysis (10.0%) at the end of life. AD use was more common in older individuals (p<0.001); 60.7% of those ≥80 years had an AD vs. 13.6% of those who were <60 years old. While ADs were more common in women than men (46.7% vs. 36.2%, respectively) and in those with preserved EF (47.2% vs. 34.0% in those with reduced EF), differences were not significant after adjustment for age. AD use was no more common in patients with worse NYHA functional class or health status as measured by the Kansas City Cardiomyopathy Questionnaire. Conclusions: Despite a high mortality rate, over half of community patients with HF do not have ADs, and existing AD fail to address important medical decisions common at the end of life. Further work is needed to identify potential barriers to AD use in HF patients, and to determine whether their use has any impact on patient outcomes, including end of life resource utilization.

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