Random Thoughts from a Restless Mind

Dr. Darrell White's Personal Blog

Cape Cod

A Common Experience With Uncommon Disease

It really makes no sense. No sense at all. I live in a city that can be described as a mid-major, sure, but it happens to be a city that has a major league medical community anchored by two large research centers. Three if you happen to have a pediatric disease. And yet, with all of our local resources it can be absolutely maddening if you have a relatively rare disease, an unusual presentation of a common affliction, or if you happen to need highly specialized care at even the most mildly inconvenient time. There is a rent  in the very fabric of our medical system, the part of the general healthcare system where actual medical care is delivered to real, live patients by doctors and nurses and the like.

One of the main selling points of the Accountable Care Act was that it would encourage the creation of large vertically integrated organizations that would be so efficient that they would provide medical care to people with greater convenience at a lower cost. In reality, not so much. Where once a patient would call an operator sitting at the front desk of her doctor’s office to make an appointment, one now calls a large center that resembles the kind of place you call when you have a problem with your credit card. Your operator has no idea what’s going on in the office, and she has all kinds of rules that are in effect barriers to seeing the doctor. If you have an emergency there is only one answer allowed: go the emergency room.

Neither convenient nor cost effective, that.

What happens when you have a rare, unusual, or complex problem is even more maddening. Once upon a time institutions like the Mayo Clinic, Cleveland Clinic, and Cedars Sinai were willing recipients of referrals from doctors in the community (or from within their system) who had the very hardest medical challenges. Indeed, in my recollection that’s all they really wanted to see. They were so busy making brilliant diagnoses in the most confusing medical cases, and performing brilliant surgeries on the most difficult and rare diseases that they had no time to see the common, mundane diseases that make up the overwhelming majority of what most doctors see in their offices and the OR. More than that the doctors at these medical meccas were simply thrilled to have your referral if you, like me, were someone who saw the masses. The great professors were available 24/7/365.

Now? Not so much. The age of the Accountable Care Organization (ACO) is the age of the institution. What was billed as a program meant to return the patient to the center of the care experience has actually driven the patient to the bottom of the org chart. Where once the patient was truly the focus the most accurate description of the priority cascade is now institution (administration) -> government -> payer (insurance) -> doctor -> support staff -> patient. With few exceptions there is no such thing as A PATIENT; institutions (and payers, etc.) talk only about PATIENTS. Like customers at Target. An omnibus group to be assessed en masse, with conclusions drawn and then applied to a population, not a patient.

This works I suppose, at least it sorta works from a medical standpoint, if you are a patient who has a common problem that fits in the middle of the Bell Curve of presentations. Where once these vaunted institutions were staffed by a small cadre of truly elite practitioners, nothing but Generals and Colonels, there is now an army of  privates and corporals marching in lockstep. Like an army they are fed by a massive infrastructure that is unseen and uninvestigated, punching in and punching out, their output measured as precisely as that of a manufacturing company staffed run by a Six Sigma star chamber. But what if you, the patient or the parent of a patient, fall outside the limits of the Bell Curve? What if you are like the patients who used to constitute nearly the entire population of patients at what used to be called tertiary care institutions?

Let me tell you a couple of stories that seem to be representative of the law of unintended consequences. Unintended, that is, if we are being charitable.

While I was out of town last weekend one of my associates saw a patient in the office who we had inherited from one of the larger institutions in town. Inherited, that is, when our patients family had become exasperated by the barriers placed between them and the care they needed, especially when there were acute issues to be addressed. Although we are not a “mecca” our group is really very good, able to handle levels of complexity that are beyond the scope of a typical specialty practice in the community. Nonetheless, there are circumstances where care should be provided in a super-specialty setting, and such was the case for this poor patient. My associate was rebuffed by both institutions, never able to get by the second level of “civilian” phone bureaucracy at either institution to even discuss the case with a physician. One offered a visit at an associated local ER (with no specialty coverage), and the other refused to even offer that since our patient had once been seen in the other institution and was therefore “their” patient. When I intervened I did speak to an on call specialist who agreed to have our patient seen by their onsite (general) ER. I arranged care with a private subspecialty group.

Our patient got the care they needed because I have 30+ years of experience, and I have contacts I’ve built up along the way that I can call on in a pinch. What if you are a patient, or the parent of a patient, who needs something unusual, out of the ordinary, even if you don’t need it on an emergent basis? One need only look at the evolution of disease support groups on various social media platforms to understand the scope and character of the difficulty that this population faces when they need specialty care. Let me use our little family as an example (my son and daughter-in-law have been very open about their experience).

A child has a number of small but not inconsequential medical issues that don’t seem to be related, but there are just one or two too many to just chalk up to being a “little behind”. Mother and grandmother share their concern with the family doctor who agrees, but admits that it’s just a bit beyond their scope of practice. Mother used her considerable Google-Fu and discovered that there is a medical condition that explains everything that is going on, and she has spent some time in an online support group learning about it. She  has convinced both grandmother and family doctor that a rather rare but well-known entity is possible, so the family doctor arranges for the proper specialty consultation. The specialist agrees and orders the standard test, an MRI, and all hope for a quick confirmation so that a solution can be found.

So far, so good, right? A process that’s a little slow, but a process moving forward. Once the MRI confirms the diagnosis we will surely find an expert to do the surgery since we live in an area with not one, not two, but three world famous children’s hospital. Even if the MRI is equivocal the support group members assure our little family that the existence of the “occult” or hidden version of this condition is well known enough that we will be able to move forward locally. Until, you guessed it, the MRI was read by the infantry as “normal”, and the specialty surgeons declined to even see the little patient.

Mecca was closed.

In the age of the ACO this is such a common occurrence that the support group could not have been more blasé in its response. A dozen or more moms chimed in with carbon copy stories of large, prestigious institutions that no longer looked beyond one or two standard deviations from the mean. What has replaced the tightly nit and interwoven physician networks of trust in which a dogged pursuit by the family physician would carve a path to the necessary super specialist is the online support group. Where once a single doc could move the needle there was now a hive of collective knowledge and experience that sought out and then supported those few specialists who practice as if they were back in the era of the giants. And so it was that our little patient traveled from Cleveland, home to three world famous children’s hospitals, to Providence and the surgeon who would go on to confirm the diagnosis and perform the surgery that would lead to a cure.

What does it say about a healthcare system that has dismantled  the institutions that once cared only for the most complex and complicated medical problems, as our little patient experienced? It turns out that the MRI was misread; the diagnosis was obvious to the Rhode Island surgeon, and easily seen by mother and grandmother once it was pointed out. What does it say about division heads who are so consumed with acquiring market share in the most basic areas of a specialty or service that they allow the growth of a culture that is built around turning away these challenging problems at the door, as my patient experienced? Volume and margin have triumphed over the miracles that we once came to expect from great medical institutions.

What happens to the patient who doesn’t have an old, connected doc willing to get on the phone to find the right place and the right care? Or the child who doesn’t have a mother or grandmother who will doggedly pursue the diagnosis and care that was once pursued on their behalf as a matter of pride, a matter of course? What happens when Dr. House is too busy doing cash-pay executive physicals to see the patient he was trained to save?

Leave a Reply