Is the "Heart Failure" Label Hindering Effective Care?
The term "heart failure" remains appropriate for hearts sick enough to be discarded for transplantation. "Heart failure" seems appropriate to describe decompensation leading to hospitalization or refractory symptoms leading to pump failure death. However, many patients travel a long and interrupted journey after first diagnosis of a condition that could, but might not, end in HF death. Should the entire journey be labeled harshly as "heart failure"? For respiratory failure, patients go on a ventilator. For kidney failure, patients go on dialysis. For engine failure, the car needs to be towed. Are people confused when we apply the term "heart failure" differently? Our lexicon reveals misalignment between that term and the patients described by it. It is not surprising that we confuse patients with our explanations of "asymptomatic heart failure" or "heart failure with preserved ejection fraction," or the vista of a long, active lifespan until death resulting from some other cause.
The mission to prevent disease progression is undermined if directed at patients labeled as though failure has already occurred. How often have you heard patients protest that they are "not failing"? Progression of disease may be most preventable in those with few or no symptoms, as shown 12 years after the SOLVD trials (Studies of Left Ventricular Dysfunction) and in the recent PARADIGM-HF trial (Prospective Comparison of ARNI With ACEI to Determine Impact on Global Mortality and Morbidity in Heart Failure). If these patients are unwilling to accept the label of "heart failure" for which these therapies are indicated, how will they engage in their own care? Similarly, patients recognized with genetic mutations or chemotherapy that places them at risk may reject being branded as already in an HF stage. This stigma has consequences not only for self-image and personal goals but also for families, employment, and insurance. Clinics labeled as "heart failure clinics" and the linked attachment of HF diagnosis codes may discourage entry of those patients who could benefit the longest.
Any adjustment of terminology would inevitably threaten the status quo. Societies and journals include "heart failure" in their names. Our field has been validated with appropriate subspecialty recognition and most recently with separate reimbursement for HF consultation within cardiology. However, none of the prominent patient advocacy groups clamor about HF, which affects >2% of the population, nor have celebrities taken the stage to champion earlier diagnosis and treatment of HF, not even ex–Vice President Dick Cheney, whose ventricular assist device and transplantation were prominent news. The status quo in fact represents remarkable underresponse to this prevalent and devastating condition. Would a different term inspire more champions?
Circulation. 2017;136(15):1359-1361. © 2017 American Heart Association, Inc.