Random Thoughts from a Restless Mind

Dr. Darrell White's Personal Blog

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Archive for October, 2019

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?

Tiny Cultural Collisions

I just returned home from the largest of the annual ophthalmology meetings. At these gatherings I see my professional friends, and some 35,000 or so of us descend upon whatever city we are visiting. We bring all manner of customs and culture along with us, there to collide with those of the locals. Here is what I wrote about this a few years ago, still relevant today.

It takes very little effort to observe the intersection of cultural norms. Indeed, it takes a substantial effort NOT to notice them when they collide, as they must, in the polyglot that is the United States. Physicians, it’s been noted, are little more than paid observers; I see these collisions daily. What are we to do when cultures collide?

Now, I’m not talking about the “old as eternity” cultural divide between teenagers and their parents; in the end the teens will either hew closely to the cultural norms of their heritage or fall more in line with those of their present address. What I am interested in are those cultural norms that remain an integral part of the fully formed adult one might encounter in a rather typical day, and by extension whether and how one should respond to any cultural dissonance. Or for that matter, WHO should be the one to respond.

It’s the tiny ones that catch my attention. Personal space for example. The typical American personal space extends one arm length between individuals. Something shorter than a handshake, more like a handshake distance with bent elbows. The Mediterranean space involves an elbow, too: put your hand on your shoulder and point your elbow to the front and you have measured the personal space of a Sicilian. Asians on the other hand occupy a much larger personal space that can be loosely measured by a fully extended fist-bump. Something which would be anathema in polite Japanese company, but no matter.

My favorite little example of the variety of cultural norms that swirl in the soup of the great Melting Pot is the affectionate greeting. You know, what most fully acclimatized Americans would recognize as the “bro hug” shoulder bump and clasp, something that would be appalling to a Parisian or Persian, or indeed even to a Princess of the Antebellum South. Yet even here there are differences. The Princess, joined by legions of Housewives of Wherever and Junior Leaguers everywhere are ninjas in the practice of the single-cheek air kiss. It should be noted that ~90% of men are NOT ninjas in this particular art, and are expected by its practitioners to bungle the act.

Persians and Parisians, on the other hand, find the one-cheek air kiss to accomplish only half the job. They, and others who share centuries old cultures, warmly greet each other with a two-cheek kiss. I am sure that there are nuances involved here that remain unseen and unknown to both most men and certainly most (all?) who don’t share the heritage. (As an aside let me just say that I am a huge fan of this particular cultural norm because it means that two of my very favorite colleagues, Neda and Carol, always arrive bearing TWO kisses).

So what’s the point here? Two, I think. First, there is a certain boorishness in the failure to observe and recognize the existence of these cultural norms when they are encountered. Some, like those I’ve mentioned, are the relative equivalent of a soft breeze, neither strong enough to fill a sail nor de-leaf a tree. Recognizing them, even in the tiny manner that one tries not to trample on them even if they will be ignored, is a tiny gesture of kindness, respect, and courtesy.

The flip side, number two, is deciding which of these norms is the default setting. Here things get a bit stickier, especially when cultural norms run afoul of SOP on the particular ground they occupy. Think air kiss in Afghanistan, for example. Bowing in the boardroom of Samsung in San Clemente. There are more, and bigger examples, but you get the idea. Here I think geography holds the trump card: “when in Rome” should be your guide, especially with cultural norms where the collision may be substantially more impactful than whether or when you turn the other cheek, a tornado to the above tickling breeze.

Perhaps we could all agree on the two-cheek greeting thing.

In Memoriam: Abby, the Wonder Dog

In Memoriam: Abby the Wonder Dog

This morning I was awakened by a text from Beth: “Call when you can.” That’s almost never good, and today was no exception. My beautiful, brilliant dog Abby had died. A tumor was wrapped around a major artery; there was nothing to do but comfort and love her after the artery burst. She died in her Mamma’s arms as my son Randy gently stroked her head.

May I tell you her story?

My older boy, Dan, shared an apartment with two friends and a very cool Border Collie named Dakota. When Tommy and Megan moved on Dakota went with them, leaving a hole in Dan’s heart that could only be filled by another dog. Did you know that farmers in central Ohio who raise working dogs don’t always spay or neuter their packs? Neither did we. While I don’t know how extensive this next part is, at least some of the pups that are not needed to work the farms are simply turned out onto the land to fend for themselves. It’s enough of a thing that there is an animal rescue in Tiffin, Ohio dedicated solely to these “extras” from the litters.

Abby and her sister were feral for the first 6 months of their lives. After being live-trapped they were brought to the Border Collie/Australian Shepherd rescue where Dan somehow discovered Abby’s picture. There must have been 3 dozen dogs in crates and running in outdoor pens when we arrived to see if they would let us adopt one. It was funny. We had to audition for the staff. They brought out 6 or 7 other dogs to see how we would handle them before finally bringing Abby out of her crate.

Abby, who promptly came right over and climbed simultaneously into Dan’s lap and all of our hearts.

Herding dogs like Abby, part Border Collie and part Aussie, are rightly famous for their intellect and their energy. Having one of these without a farm to run them is a special kind of crazy. As a college junior Dan’s apartment was hardly expansive enough to contain her energy. Was it boredom or anxiety that prompted her to tear the carpet in the apartment and eat down through the subfloor while he was in class? She never said, but shortly after her “redecorating” she came for her first extended stay with Mom and Dad.

We had quite the little pack, Beth and I. Haddie our English Setter was like Nana in “Peter Pan”, mothering dogs, children, and adults alike. Tiny Tim arrived looking more than a bit like a Beanie Baby, so tiny and fragile, velcroed to Beth’s side. And then Abby arrived, all energy and curiosity and mischief. Even with her canine buddies there was still something about being without her people that made her crazy. Nothing on a counter or in a closet was safe from her when we were out.

I’ve told most of these stories before. Like the time she ate about $200 in petty cash from the office. Pretty interesting poops in the backyard after that as you can imagine. The very best one was when she “ate my homework”. We’d gone out to dinner and apparently I didn’t put my surgical sheets for the next day’s cases far enough back on the counter. If that’s all it was I could have run up to the office and simply run off new copies. Nope. As it turned out I was also transporting a couple of special order lens implants from one surgery center to another. Implants for which one of my patients had paid about $1500. Oh yeah, Abby ate those, too. That was a pretty weird phone call, telling my patient why I was cancelling their surgery at 9:00 PM the night before. The OR staff still talks about that one.

Abby never really lost a kind of wariness around new people. It was there with all of us (except Dan) at the rescue and remained after she came to live with Beth and me while Dan was doing lots of traveling as he completed his studies. There’s a lovely fellow who worked for the boys at their gym who Abby never warmed to; he sent us a very nice condolence in which he shared that this had always made him sad. Beth and I had just one worry, that she would be skittish around little ones like grandchildren. No worries there. I will forever see her lying close to her newest littlest people, totally unperturbed as they tumbled on top on her in their travels.

Or the tiny little “drive-by” kisses, soft little licks she gave Landon or Lila or McKenna on her way by. Yes, those…those I will see through my tears forever.

Abby loved us from the minute she chose Dan right up until she died. The last thing she saw on this earth was her people Mom, Beth, and her little brother Randy. I’m still not sure if it was better to be away or not. All I know is that I loved my dog, and that the very last thing I did when I left the house last week before my travels began was to reach down, scratch her ears and tell her. For all of my sorrow I wouldn’t trade our years together for anything.

Fair winds on this last journey Abby, your sails full with the winds of my love. I did so love being your person.

Musings on When a Game Became “The Game”

Here is an update to an essay from a couple of years ago. I read it today, on a Saturday afternoon, when I will once again not be watching football.

 

Randy texted me about the exciting finish to the ND NCAA football game. Dan called and asked if I was watching the Browns. It made me smile. Not the result, not even the topic, but the excitement. A parent is only as happy as his least happy kid, and at those moments two of my kids was very happy. My sons football playing days are long behind them, but the game still brings them joy.

Me? Not so much.

Oh sure, there was a time when football never seemed to be any lower on my list of wonderful things than 2 or 3. I was a medium-sized fish in a puddle as a high school football player, but I didn’t have the game out of my system when I graduated. Accepted at one Ivy League school and waitlisted at another, I turned down both because I was too small to have any chance of playing football at that level. Instead I went to a very old, very small school and played a bit all 4 years. Now done as a player I was nonetheless still enthralled by all other things football.

Many of my closest friends were met on the freshly cut football fields of my youth. Wins and losses followed on those fields, most of which I’ve long forgotten. Indeed, I’ve written before that it is only the losses I remember, especially those that resulted from some personal failure in a game. A fumble, perhaps, or a blown coverage. And yet there is no escaping the fact that those countless hours at practice, in the locker room, and on the field are in large part responsible for who I am, the adult I’ve become.

It’s a powerful thing, football. The game itself is exhilarating to both play and watch. At least, it was. I find myself finding all kinds of reasons not to watch football games now. Not consciously finding “big picture” reasons so much as tiny reasons, like Beth wants me to tag along to the barn, or Abbie the world’s smartest (and most easily bored) dog would like an adventure kind of reasons. Football of all sorts played at any and all levels has sunken to a kind of triviality, easily trumped by a trip to the grocery store.

No one thing is responsible for this falling out of love, as it were. This fall is different from the last, and the one before only in that it is now glaringly obvious that football holds for me no essential attraction by itself. Looking back my only surprise is that it took me so long. Why didn’t I begin to turn away as my friend the ER doc buzzed through Dan’s shoulder pads with a saw in order to get him into the MRI? Or when I walked onto the field after Randy knocked himself out cold with a helmet-to helmet tackle to force a fourth down, his first concussion? I was still young, still sure that the game would bring my sons what I thought it had brought me.

I see them now, both of my boys, face down and immobile, and I shudder. I started to see them each time I saw a player go down in high school, or college, or the pros. I began to see that I valued those young men nearly as much as my own boys, and I started to notice that the game of football had become The Game. Those entrusted with The Game did not–do not–appear to share my feelings about the players.

The junior high coach carries the star running back to the bench, there to wrap the sprained ankle in the hope of returning him to the game. In a high school freshman game, a rout, the first string defense is still on the field in the fourth quarter, the opportunity to play in a game slipping away for kids who may never get another chance, when the starting safety goes down with a severed spine on a play he should have been watching from the sideline. What was the first string learning at that point in that game? Alumni and athletic directors and coaches at colleges noted for academic excellence openly opine that they cannot win without lowering the admission standards for football players, and just as openly run those kids off the team and out of their scholarships when they are no longer needed to win. The game in the NFL becomes more violent, with ever more gratuitous violence magnifying the carnage wreaked upon the bodies of the players. Ex-pros roam the earth as a kind of walking dead.

When did football become The Game? When did the keepers of the game become keepers of The Game? When did football players as young as high school become little more than a modern stand-in for gladiators thrown into the arena for little more than the amusement of the many and the benefit of a tiny protected few? I’d like to think that there was such a time, an inflection point, when it did change, but I fear it has been ever thus. If that is so then I, too, bear some responsibility for what The Game has become. I did not turn away, or turn my own sons away, at the time of my own dawning awareness that The Game and its keepers cared naught for our sons at all, but only for themselves and their respective place and privilege.

There was a time when my playing days were long over when I still found myself on edge as the weather chilled and the smell of cut grass filled the autumn air. It was time to get ready to play football. Those days are long past, and I find that I no longer even think about watching, indeed can no longer see myself watching, except as a vehicle with which I can channel the joy of a child. And that is perhaps why I can no longer watch a game whose keepers have lost sight of the fact that someone’s child plays in The Game.

One is left to wonder about the parents of those gladiators past.

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