Good stories usually have a protagonist who is confronted with a challenge or conflict.  The story then follows the protagonist’s journey to overcome that challenge.  Often, there are one or more attempts at conflict resolution which prove unsuccessful, or that even make things worse before the path to success is revealed. In the end, the best stories are those where that successful path was right in front of the protagonist the entire time.

The Challenge for HCM Patients: Local Cardiologist vs. Center of Excellence

For a good story related to the world of hypertrophic cardiomyopathy, you need look no further than Jill Celeste’s HCMBeat blog post entitled “Myectomy:  A Twice in a Lifetime Experience.” The protagonist in this story is obviously Jill.  The conflict is the impact of her HCM symptoms on her quality of life.  Her journey included unsuccessful forays into different therapies before finally, Jill arrived at the resolution of her conflict by seeking care at a medical center with dedicated expertise in the treatment of HCM.

In the sake of full disclosure, that center happens to be Mayo Clinic where I work.  Jill’s great storytelling reminded me how some really clever books and movies tell the same story from a different point of view. In this blog post, I would like to give you my point of view as a physician who directs a HCM specialty center of the best way that you can navigate your own HCM.  I will share how care by a “center of excellence” can fit into the bigger picture of your HCM care and give you some suggestions for ways to balance so you can work well with both your local care team as well as a specialty center that may be a long way from your home.While the details vary from person to person, Jill’s story is conceptually one that we at Mayo Clinic encounter rather commonly. Luckily, we are seeing it less frequently, probably owing to the increasing availability of information on the internet combined with active voices like Jill and Cynthia Burstein Waldman, both of whose stories can be found on this website.

HCM Not Often Seen by Community Cardiologists

Your local/primary cardiologists WANT to help you. The reason that you may sometimes receive incomplete or conflicting information from them is simply due to the reality that most cardiology practices are inundated with cases of coronary artery disease, atrial fibrillation, and heart failure from cardiomyopathies other than HCM.  Each of those 3 types of conditions is 10-100 times more common than HCM.  As a result, most cardiologists only get the chance to see a handful of patients with HCM in their careers.  Most are well aware that there are important issues to discuss such as genetics and family screening, sudden death, and that some patients may need operations to help them feel better, but the nuances around each of those issues are complicated, time-consuming pursuits for someone who does not routinely deal with these issues.

Why is Expertise Important?

It has been said that expertise is the product of repetition, especially if that repetition results in the user being able to intellectually automate things that others have to process using higher brain function.  Pattern recognition and response is another concept that has been attributed to expertise, but even more importantly, I think, is the recognition of variation from the usual patterns.  What does this all mean?  Simply put, experts have developed mental filters that allow them to see important details quickly. Right away, they can see how each person differs from a “standard person.”  They can focus on how the person in front them of fits into the paradigm and, at the same time, see how that person is unique.  Experts see the forest, then the trees, whereas those with less experience can get bogged down examining the trees.  The mastery of medical expertise is being able to communicate the forest and the most important trees to the individual patient so that they can better understand their own situation, their options, and can make informed decisions about how they want to proceed.

Who Should Be on Your Team?

Centers of excellence are needed for some conditions, but not all.  Rarity and complexity determine the level of specialization that offers the best solutions for patients.  HCM is pretty rare and can be very complex.  As an HCM patient, you should have an HCM expert in addition to a primary cardiologist who knows you and is familiar with your situation.  On any given day, when a new (or recurrent) symptom pops up, you need to have someone to turn to who knows that you have HCM and that there are specific first-line therapies and investigations that can be done to make sure you are safe.  In addition to your primary cardiologist, you will also benefit from having a center of excellence to provide you with education about HCM and so you can learn precisely where you stand on the care path and what your treatment options are. The expertise of the specialty center can be extremely valuable if you are confused about any elements of your diagnosis and especially, when risky, irreversible treatment options are being considered.

Doctors and nurses at the major HCM centers want to be a PART of your team:  they do not wish to completely replace the local cardiologist.  Instead they want to help advise your local team and make suggestions.  In my view, you need BOTH a primary cardiologist and a center of excellence that can support you.  It’s a 3-way team:  the patient, the local cardiologist and the center of excellence.  If you happen live near a center of excellence, then you are fortunate, since there are just a small number of available centers.

There are other classes of heart patients who are similar to HCM patients in their need for a specialty center.  Congenital heart disease patients, who are also somewhat unusual in the general cardiac patient population, also really benefit from having a center of excellence that is available to them to advise and work in concert with their local doctors.

Myectomy: Expertise is MORE than High Volume

A recent published study showed that hospitals who do a lot (“high-volume”) of myectomy procedures are 4-5 times better at it than hospitals that don’t do very many (“low-volume”).

Dr. Rick Nishimura and I wrote an editorial published in the same journal which pointed out that centers of excellence are actually 50 times better at myectomy than even the “high volume group.”  The difference probably comes down to the fact that centers of excellence consist of a team of people that come together around this one condition.  They have surgeons who understand both the science and the art of performing the operation.  They have cardiologists who understand the science and art of identifying which patients are most likely to benefit from different therapies, and who understand the science and art of helping patients make decisions for themselves.

What I Find Most Rewarding

The most amazing part of my practice isn’t when a patient contacts me a few weeks after a medication change or ablation or myectomy to tell me that they feel great—though that is very rewarding indeed.  No, the part that gets me every time happens during the first visit with the patient.  There is a moment where I see the individual patient (and their family) go from being confused, or even overwhelmed, to a moment where they suddenly understand what HCM actually is and why they feel the way they do.  At that point, I know that the next decision that patient makes is going to be made from a place of strength and confidence.  Those are the most amazing moments for me.

Conclusion

In my story, the HCM patients are the protagonists.  Their conflict is the tension between the convenience of the local cardiology team and the expertise of the HCM Center.  I suspect that many of you can now see that the resolution has been right in front of you all along.  You don’t need to choose between local and expert:  instead you can and should choose BOTH to be a part of your team.

About Dr. Ommen: