“I’m sorry, Mr. Smith. Your heart is very sick, and your body has irreversible damage. It’s too dangerous to attempt a transplant or implant a heart pump. There’s nothing more we can do.”

I’ve encountered this scenario more often than I care to admit as a cardiac surgeon that treats advanced heart failure. Tragically, many of these patients present long after being followed closely by their referring providers—“I’ve been seeing Mr. Smith in my office for years, and he’s been pretty stable all along. He seemed fine just last week, so I’m not sure why he suddenly crashed.”

Timing is everything. One month, perhaps one year earlier, we may have had a fighting chance at saving Mr. Smith. It brings to mind some similarities with cancer, a curable disease if detected at an early stage and expeditiously treated. However, intentionally waiting until a cancer becomes metastatic before offering curative therapy would be unequivocally outlandish and indefensible.

Cancer is enviably very clear-cut that way. The moment a cancer is even suspected, be it a spot on a chest X-ray or a lump on a breast exam, a seek-and-destroy mission is reflexively launched. No questions asked. A flurry of activity ensues: scans, bloodwork, biopsies, and referral to a cancer specialist. No stone is left unturned. The train doesn’t stop until the diagnosis is made and corresponding treatment is administered. If cancer is ruled out, well then it’s back to the regularly scheduled programming. No harm, no foul.

Regretfully, this type of automated response does not exist in the heart failure world. For a disease with mortality rates rivaling many deadly cancers, the call to action when heart failure is diagnosed is comparatively subdued and haphazard. Medications with proven efficacy are prescribed and titrated over time to maximally tolerated dosages. Absent overt deterioration, such as worsening heart failure symptoms or need for hospitalization, this strategy of “guideline-directed medical therapy (GDMT),” as sanctioned by the American College of Cardiology (ACC), is the mainstay of heart failure management.

But GDMT has many nuances and pitfalls. Deciphering whether a patient will tolerate any further increases in heart failure medications can baffle even the most seasoned clinician. And those tasked with making these tough calls includes an array of family medicine doctors, internists, and general cardiologists. With such divergent medical backgrounds, adoption of ACC guidelines is by no means automatic. Many clinical studies have, in fact, documented inconsistent adherence to GDMT, with rates as disturbingly low as 20 percent.

For refractory heart failure, the guidelines recommend referral to a heart failure specialist, namely, a cardiologist subspecialized in Advanced Heart Failure & Transplant Cardiology, a subspecialty formally recognized barely a decade ago. On some level, it still lacks the street cred afforded other established medical specialties, a potential obstacle to timely referral. After all, many of these providers proudly proclaim they “know how to treat heart failure,” and may not see the necessity for referring their patient to a “specialist.”

It’s often only when things really get out of hand that escalation of care is seriously contemplated. The horse is out of the barn, and now the only hope for salvage is a heart transplant or mechanical heart pump. A multidisciplinary “heart team” must conduct a thorough look under the hood in search of any disqualifying findings. The incidental discovery of an occult cancer could, for example, derail the proceedings.

Of course, this evaluation would ideally occur electively as an outpatient, but many occur on a more urgent, inpatient basis. Furthermore, many of the patients surprisingly lack the basic prior testing we need to complete our assessment. Mammograms, colonoscopies, and other routine cancer screenings must now be rapidly orchestrated. This becomes logistically challenging, if not impossible, when time is of the essence and patients are critically ill. But, we also can’t afford the chance of unknowingly transplanting someone with an undiscovered cancer, only for it to spread uncontrollably after starting antirejection medications. Having to forego any of these tests may, therefore, eliminate heart transplant as a viable option.

Patients and their families are understandably very overwhelmed in these instances. They never saw this coming. Now, at the eleventh hour, they’re grappling with the grim prospects of an imminently life-threatening illness. Again, we’re left wondering, “If only they got to us sooner?” We all would have seen this coming, and been prepared to meet the challenge.

To be clear, the referring providers are not at fault. These well-intentioned, fastidious clinicians are simply being duped by an unpredictable disease that doesn’t play by the rules. It’s the nature of the beast. Like a treated cancer that ominously recurs during supposed remission, so too can stable heart failure progress silently without any discernible signs or symptoms. And when it eventually does become clinically obvious, it might very well be too late, like it was for Mr. Smith. Even within the confines of meticulously regulated clinical trials, up to a third of patients suffered progression in heart failure severity while evading clinical detection. It’s no wonder that in real-world practice, this stealth progression is even more widespread.

With nearly seven million people diagnosed, heart failure is a true national health crisis impacting all facets of medicine. To right the ship, we must all acknowledge heart failure for what it is, a moving target. The current paradigm is flawed because it fails to account for that, relying too heavily on subjective interpretations of objective guidelines. Any diagnosis of heart failure should mandate a referral to a heart failure specialist, just like any cancer diagnosis warrants an automatic referral to an oncologist.  This revised strategy would yield greater consistency and adherence to GDMT and enable the early identification of patients that would benefit from advanced therapies, before decompensation. Patients and their families would be more prepared to meet these eventualities, having all requisite screening tests completed well in advance. The bottom line is, we would have more success stories and testimonials to share, rather than tragic lessons like Mr. Smith.

Brian Lima is a cardiothoracic surgeon.

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