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Contact Tracing: Lessons from the AIDS Era for Our World Today

“Harvey told me to find a bow tie for a preppy. I hope you like it. Thank you for taking care of him. He really liked you.” –Mrs. K. May, 1987.

90,000 died in the U.S. 90,000 Americans died of AIDS before life-saving treatments became available. First it was gay men, then people who were addicted to injectable drugs who shared needles, and finally people requiring transfusions who were unknowingly infected by blood contaminated blood products. All from a novel virus that seems to have “jumped” to humans from another primate. 100% mortality.

90,000.

Now to be sure, AIDS is a manageable chronic diseases treatable with a pill in the U.S. (and most developed countries), but it still kills–what?–a million people worldwide. Some of that is due to a lack of access to a diagnosis, and in those 3rd world countries where the diagnosis can be made there is a lack of access for a number of reasons to the effective treatments. In those cases AIDS is still 100% fatal. If a diagnosis can be made an AIDS “hotspot” can be cooled, if not extinguished, through a variation of something we are now all becoming quite aware of, contact tracing and physical distancing. Sadly, in many of those 3rd world countries where AIDS is still endemic, these very basic public health interventions contravene unalterable societal norms and culture; the virus spreads and people die.

What does this have to do with us today as we address a new, novel virus that as of yet has neither cure nor medical prevention in the way of vaccine? I’d like to share a little history from the earliest days of the AIDS crisis in America, and a little story about my own experience as a young doctor just starting my career in medicine. Let me first be very clear about my place in that history. I am a straight, cis, white male born at the tale end of the Boomer generation. At no time in my life have I felt the sting of real discrimination based on either something I am, or something I am presumed to be based on what I look like, what I do, or who I am (my father did face discrimination as a Catholic, something which was largely a historical remnant but the time I came of age). As such my story and my thoughts about both what it meant to be gay in the 80′s and the possible impact of contact tracing in an epidemic or pandemic are sympathetic, based on observation, only.

Looking back my first encounter with anyone I could say I knew was gay was in the first week or so of my freshman year in college. The phone rang in my dorm room (landline, rotary dial, no caller ID), and the caller addressed me by name and asked if I was gay. As I recall I laughed a little, thanked him for asking, and said that no, I liked girls. That was it. He said thanks and hung up. Now of course as a child of the 60′s and 70′s I had most certainly come across many gay men by the time I’d made it to college, I was just clueless to this fact. There was a teacher in high school who was “outed” by a couple of kids from school after I graduated; they saw him coming out of a gay bar in Providence one night. That was pretty much it.

For the most part I just ignored the fact that there were gay men (and looking back, women, of course). Without really thinking about it I guess I figured that if I was indifferent to this part of my college mates’ lives then pretty much everyone else must be, too. It never dawned on me that being gay might have very real, very serious consequences when it came to very normal stuff like getting a job. I was totally clueless, in reality to most things that didn’t have any direct impact on stuff happening inside my own personal little navel-gazing bubble. Like everyone I kinda knew who might be gay, but again, I was indifferent. Even during a year when what it meant to be gay on campus was the year’s issue the only time I really paid attention was when one gay male student was interviewed on the college radio station about being attacked for being gay by a fellow student chasing him with a machete. And only then because the machete-wielding student was one of my close friends taking out his anger at being dumped by a girlfriend by swinging his sword at the squirrels along the driveway.

For the record neither the shaken (but mistaken) young man nor a single squirrel was harmed in the “attack”.

And then came AIDS. Those of us of a certain age recall that the initial publication was titled something along the lines of “Acquired Immunodeficiency in Homosexual Males”, I think first in JAMA if memory serves. I remember reading it in the med school library. Heck, I may not have even been out of the classroom yet. My presentation at the conclusion of one of my “away” rotations in ophthalmology was on the ophthalmic manifestations of this disease, soon to be re-named AIDS. As an aside I wrote that hemorrhages and focal areas of ischemia (cotton wool spots) were the signature signs of the disease, a statement that was shot down as incorrect by the retinal attending in the room. Turns out that I was technically right; hemorrhages and cotton wool spots DO result from HIV, while the entities that the professor pointed out were actually secondary opportunistic diseases. During my residency at NYU/Bellevue 50% of the inpatients on the medical floors would have full-blown AIDS. Every resident would become an expert in all things AIDS-related in and around the eye.

But it was in my internship in medicine at Rhode Island Hospital (RIH, a Brown University affiliate) that I would learn what it meant to be a gay man in America in the 70′s and 80′s. There were very few AIDS patients on the floors at RIH in the summer of 1986. I had one very special patient, Harvey K, who was on my service each time he was admitted that year. Openly gay, Harvey had been one of the earliest activists in the gay community, speaking out initially on issues of discrimination in general, and then as his life was upended by AIDS, speaking out while he could on the plague that had descended on his community. Harvey was unfailingly kind, generous, and understanding of his rather unworldly intern, cloistered as I was in my cis-straight world. He answered all my questions about what it was like to be a gay man in those days; he was  brutally honest about everything, including some of the activities that  led to rapid spread of HIV from a relatively small number of initial individuals who harbored the virus but did not yet have the disease.

This is the part of what Harvey taught me that applies, at least superficially, with where we are today. In its earliest phases AIDS was a disease transmitted almost entirely through sexual contact. Public health strategies to address this kind of disease propagation had been pretty standard for decades by the time AIDS arrived. Once a diagnosis was made a detailed list of contacts was then assembled. These people were in turn tested to see if they had the disease, were treated, and their contacts were similarly identified for follow-up. Similar tactics were used in the early days of TB as well, even though TB (unlike diseases transmitted by sexual contact) was not as easily and successfully treated with antibiotics. Harvey gently pointed out that yes, contact tracing could indeed prevent an infected individual from passing on the virus, and it could also alert his contacts that they were at risk to acquire the disease. The disease was fatal, but that was only one part of the issue.

Since only one small segment of society was affected AIDS at that time, being identified as a contact meant being identified as being gay.

Remember, this was in a time when being identified as a gay man had very real consequences. Not only could it affect your employment, but it is reasonable to say that the majority of gay men were not “out”, either publicly or privately. Nearly every major religion openly rejected these individuals, and more than half of the states in the U.S. still had laws on the books essentially making it illegal to be gay. One of the very first protest movements organized by the new gay activist organizations was to stop AIDS contact tracing before it started. As a newly minted physician, enthralled with science and quite sure that standard public health initiatives were mandatory to treat this new epidemic, it was left to my patient Harvey to teach me about the reality of large-scale medical intervention on vulnerable populations.

As we fast forward to our world in these days of the Corona virus and the varying degrees of societal “treatment” applied at the federal and state levels it is first necessary to be very clear that being told that you cannot go to work if you had contact with someone who is  test positive is not the same as being told that you have been in contact with someone who had AIDS in the 80′s. Not by at least one or two orders of magnitude, not. That’s kinda like saying being Catholic in the 70′s was the same as being Black. Again, not the same.

But one thing that Harvey taught me is the same. People who are in the contact strand are afraid of more than just the disease itself. They are also afraid of what having the disease, or even being associated with the disease will do to their life. Will they be able to go to work? Feed their family? Whether or not they do get the disease will someone tell them who they can see, where they can go, and what they can do? For better or for worse there are an awful lot of misunderstandings about COVID just like there were about AIDS. If they are are identified as a possible COVID risk will people think differently about them? Remember, unlike the gay men of the 70′s and 80′s who had decades to thicken their skin and steel their psyche against these kinds of feelings, the people who will be tracked now (most without the knowledge that they are being tracked, or have triggered a tracking tract) are experiencing this for the very first time.

Again, the true consequences are small, one or two orders of magnitude less than that faced by gay men in the earliest days of AIDS. But I’m sure that Harvey, as gentle and kind and understanding as he was despite his reputation as a fiercely powerful activist before he became ill, I’m sure Harvey would suggest that we seek to understand why people may rebel against contact tracing today. Just as surely as he would then go on to teach anyone who would listen (and eventually those who came after Harvey taught everyone to listen), that this is different. That we do not have the same concerns that Harvey and his friends did back then. While we can certainly discuss how it would be done and how consent would be given, Harvey would say that in this instance the population that is vulnerable will only be helped by “by the book” public health measures.

Harvey and I became friends of a sort. He needed some really terrible things done to him while he was in the hospital and forgave me each time I had to do one of them. I spent a lot of time just hanging out with him when I was on call. He was very, very smart, and every story he told was one that I would never have heard in my life to that point. As I said above, he was very understanding and kind. I’ve written many times that I’ve tried to live a life without regrets, never looking back at decisions and wishing that I’d done something differently lest my life be altered today by that change long ago. You know, the Butterfly Effect. When Harvey was discharged for what we both knew would be the last time I told him that I wouldn’t visit him at home; I wanted to remember him as he was that day. Still handsome. Smiling. Well enough to be happy he was leaving. I told him I didn’t want my last image to be what we both knew was coming. In retrospect I wish I’d had more courage, for I’d very much have liked more time with Harvey. I know I shook his hand, but I can’t remember if I hugged him.

I still have the tie.

 

 

 

Thoughts on Inequality

“Life’s not fair.” –Scar

What does equality mean? What does it mean to be equal? This came up this week in my day job. A study was done that proports to show that male and female eye doctors are paid unequally. The conclusions are false at the outset in this particular case because by law, services in this particular arena are paid exactly the same no matter who performs them, when or where. Unfortunately, the sensational lede taps into all kinds of notions of fairness, and all kinds of perceptions about what people assume must be true, that women make less than men for equal work. There is no question that this is the case is some walks of life, but interestingly the data (some of which the authors ignore in their quest to prove their preconception) proves otherwise in medicine. An opportunity to examine real differences in how men and women practice medicine is thus lost in the pursuit of an examination of the spiritual quest to combat inequality, even where none exists.

Is this the unicorn of equality? Is payment under government programs the only place where equality actually exists? Heck if I know. What interests me is the fact that the first assumption is that inequality is present. Inequality is the default setting. That there is an inherent degree of unfairness in pretty much any and every setting. Know what I think? Equality doesn’t exist. It cannot exist if we are to have an ever-improving world. There is nothing unfair about that in the least.

A just civilization establishes a floor below which allowing people to live is ethically wrong. For example, in healthcare it is my contention that we have a moral obligation to see that every citizen has access to care when they are sick. Inherent in this contention is that there is a basic level of care that meets this moral obligation by ensuring the same outcome as any other level of care. One could apply this same concept to food, clothing, and housing without missing a beat. We can think of the rights enshrined in the U.S. Declaration of Independence as a proxy for this baseline if you’d like. Life, liberty, and the pursuit of happiness make a very fine baseline.

One’s right to “life” necessarily includes a right to be fed, would you agree? Equality would mean that if one among us dines on Beef Wellington, than each among us must do so as well. This is where unthinking and unquestioning fidelity to “equality” brings you. In so doing it forces everyone to expend energy protesting “inequality” better put toward fulfilling the moral obligation to see that no one goes without protein. In healthcare we see all kinds of protests againts the inequality of care demonstrated by the horror of a VIP of some sort or another recuperating from a procedure in a luxury suite, while the proletariat must recover in the equivalent of a Hotel 6. The reality is that the outcomes will be equal; the moral obligation has been fulfilled. Above a basic level in pretty much any domain you wish to examine, equality does not exist. Sorry. Scar is right. Life’s not fair.

Is he really though? Saying that it’s not fair is the same as saying that inequality above that level at which everyone has a right to live is wrong. Here is where I part company with those who hew to this viewpoint. What does it matter that someone drives a Cadillac while another drives a Kia? Do both not get you to work on time? Or that Beef Wellington again: do you not get the same amount of protein from a hamburger? The example I am using in another conversation about equality in healthcare is similar: if a medicine is effective taken 4 times a day, is the fact that someone can pay more for a version that must only be taken once a day a measurement of unfair inequality? I vote “no”.

My strong feeling is that energy spent in some way protesting “equality” is energy that is not expended on the much more important task of fulfilling the moral obligation of raising everyone to that acceptable basic level. In may, in fact, work against that effort. That constitutes unfairness in my opinion. Advocacy and protest should be directed there, toward making sure that everyone has that most basic obligation covered. Once universal entry is accomplished across all applicable domains, the next task is to continually raise that basic level for everyone, no matter how far the gulf may be between that level and whatever the “sky’s the limit” level might be. One need only look at “poverty” or “hunger” and how the bar has moved ever upward there to see how this might work.

We have a moral obligation to see that true rights are available to all. It is unfair to those who have not yet achieved that most basic level when efforts to help them are diverted to the pursuit of an unachievable conceptual goal that neither feeds nor clothes nor cures those in need: equality.

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.

Follow-Up From the Other Side of the Stethoscope

So, how did everything end up? You know, my little side-trip to the other side of the stethoscope, doctor becomes patient thing. If you recall my beaten up old dude’s body is wearing out starting with my hips. What’s it been like since my last report filed the day before I headed to the OR to pick up my new left hip?

You’re never going to believe how surgery day started. The hospital where my buddy the orthopedic surgeon operates was undergoing one of those massive EMR transitions that is one of the unspoken traumas that result when a smaller hospital is “upgraded” by being absorbed into a larger, usually brand-name hospital system. How ironic that my own personal medical journey should include an EMR transition. If you’ve read any of my drivel you know that my little practice has had a recent government “encouraged” change of EMR, and one of the surgery centers where I ply my art seems to be in a perpetual state of epic upgrades that mess with my routine on a weekly basis. And now I show up at the outpatient sign-in desk and I’m confronted by a couple of clerks with a “deer in the headlights” panic manning the computers.

As if that wasn’t bad enough the “hired guns” sitting in and helping the staff manage the transition had literally no sense of what we, the patients, were experiencing. I almost–ALMOST–made it through the entire process without comment. Woulda done it, too, if it weren’t for the line of questions about my employment. This is a silly thing to be asking someone who has been pre-authed for surgery, been through PAT, and pre-registered, but to make those poor clerks take that particular detour when they were already 45 minutes behind on the first cases of the day was simply too much for me to handle. To my credit it was the only time I stepped back around the stethoscope and pulled the “I’m a doctor card”, telling the hired gun that maybe she should let her charges skate on that bit of misery on day one.

For the most part the rest of the hospital experience went pretty smoothly. Since I was the only my guy was doing that day (as you remember he and his wife were hopping on a plane to more friendly weather a few hours later) he was around a bit more than expected. Consequently there was a little extra awareness of my doctor-as-patient status in the OR. But once I got up to the floor I was pretty much just another hip in a long line of hips to come through. Oh sure, there was a bit of enhanced attention when I had a little post-spinal issue with my bladder and the nurses discovered that I was texting the chief of urology for advice…

Ok, maybe they really did remember that I was a doctor after all.

Which brings up an interesting twist on the 2-way stethoscope street: sometimes it’s NOT an advantage when folks know you are a doctor. It’s pretty common for medical staff of all types to assume that doctors know way more than we really do about the blocking and tackling that takes place outside of our own specialties. The best example of this was without a doubt my physical therapy. My entire team was fabulous, both inpatient and at home. Each of them started our encounters with some version of “well, of course, you know that…” something. At that point it became glaringly obvious to me that, no, in fact, I did NOT know whatever, and I asked each of them to treat me like a moderately intelligent 8th grade jock who was confused by his non-cooperating glutei, etc. It was way better just being on the patient side of the stethoscope, for sure.

Now here I am, precisely 3 weeks out from my surgery and preparing to head back to the office in a couple of days to begin my journey back to my regular side of the stethoscope. As expected I’m a bit ahead of the typical total hip replacement patient, not because I’m a doctor but because I’m a solid 10 years younger, 10 times closer to my ideal weight, and 100 times more physically fit. Still, it’s amazing how far I still have to go before I can consider myself anywhere near normal. There’s still pain, there’s a ton of weakness, and boy, do I get tired easily. All normal stuff. My surprise is doubtless a side effect of my lifetime of athletic activity and what my mind recalls of recoveries in the past. Really, typical bonehead aging athlete stuff. Thankfully the patient in me listened well enough to my doc and his people and took that extra week off to recover.

In the end two things stand out when I look back on this experience. The first is that we are all human. Your doctor is human, too. We all enter the “patient zone” with one very important thing in common: we all have fear. I’m not exactly sure which fear is going to turn out to be worse, the fear of the unknown you have before the first time you have a surgery, or the fear you have the second time because you know what’s coming. Either way, it’s natural to be nervous and to be afraid. No one wants to be sick. No one wants to need surgery. Doctors who travel to the other side of the stethoscope are no different from anyone else. Those kind thoughts extended from my patients pre-op came from a place of knowing, and the care that they extended was all the more appreciated because of that.

There were no epiphanies for me, and that’s the other take-home from this experience. Ever since the landmark 1980′s movie “The Doctor” starring William Hurt as an arrogant putz of a cardiac surgeon who has a near religious transition after being hospitalized, people have just assumed that every doctor is shocked to discover what their patients experience. Not me. I’ve spent the last 20+ years of my career plumbing the experiences of my patients and those of my colleagues in and out of eye care in an effort to improve the patient experience. For sure there were a couple of things that could have gone a bit better for me, but there was no choir of angels singing moment when I realized something about what it means to be patient that I would instantly apply to my practice.

That’s probably a good thing, though, right?

The Stages of Exuberance Sunday musings…1/13/19

1) Toddler. We are hosting the Man Cub for a few days as his parents prepare to move into a new house.

I. Am. Exhausted.

2) Strategy. Trample the wounded and hurdle the dead is neither a growth strategy nor is it a viable marketing tactic.

3) Snowpocalypse When I sit down to write I enjoy looking out over the lake as I wait for inspiration to sit down and chat. At the moment my view is blocked by 1/2″ of ice on all north facing windows at Casa Blanco.

The Ice Man cometh.

4) Irrational. Whenever a new technology or concept surfaces it is often met with irrational exuberance. Early adopters behave more like acolytes than simple adherents. Potential issues with the new idea are swept aside and those who propose that all is not so new or wonderful are labeled as too dense or simple to understand the brilliance of the new new thing. In a similar vein behavior by the creator of the new idea that would otherwise be a possible signal that all is not as it seems is either ignored or explained away without any real investigation. This particular phase is more intense and tends to last longer if it is associated with something that contravenes, and more so actively seeks to disrupt the status quo. A “cool kid” factor also magnifies the exuberance.

Rare is the new idea that does not then enter a phase one could call irrational dissaffectation in which both early adopters who become disillusioned and outsiders who become interested by the buzz created by the exuberance begin to look closely at not only the idea or product itself, but also at the behavior of both the “inventor” and the company that provides the service/product. The vehemence of this response is directly related to the buzz and fervor that exists among those who continue to be excited about the new thing. During this phase it is quite likely that there will continue to be newcomers to the technology who exhibit many, if not all of the characteristics of those people who claimed “first flag” discovery enthusiasm in the earliest days of adoption.

What comes next is either some degree of general acceptance of the new thing with a concomitant adoption into general use, or a slide into irrelevance as it becomes little more than a footnote in whatever historical space it inhabited.

As it happens both my professional life and a very large part of my non-professional activity each have a very significant player/thing that is entering this third phase. You may recall that I am an eye surgeon, in particular one who operates on the front of the eye. My expertise is in surgeries that both improve vision and liberate individuals from the need to wear glasses or contact lenses. In the LASIK world what was largely a PR battle between mechanical “flap makers” and those that created the LASIK flap using a laser was eventually won by the makers (and early users) of the laser. While I still feel that the introduction of the femtosecond laser to make a LASIK flap was a solution to a problem that had already been solved by 4th generation mechanical devices, the allure of an “all-laser LASIK” proved too powerful in the marketplace. Any “bad behavior” in the middle phase was marketing related. Even though it was more expensive, the laser won.

Cataract surgery also has a femtosecond laser entrant in the game. While the technology is actually quite stunning FLACS has never been shown to be more than slightly superior (if even that according to the most recent studies) to what it was developed to replace (the surgeon’s hands). Similar fear-mongering to the LASIK experience in the middle phase was buried in an avalanche of data reiterating the treasure trove of safety statistics and outstanding outcomes achieved with “traditional” surgery. Some really nice people got run over by some not so very nice people as companies were bought and sold. The most likely outcome as FLACS enters the third phase is that it becomes a niche procedure where hopefully the surgeons push back against industry in order to shield patients from predatory pricing; this laser is more expensive, and that has been its downfall.

When thinking about my non-professional activities over the last 12 or 13 years CrossFit is the obvious topic. In my entire life I have never been a part of anything quite so exciting as the first several years I spent in the CrossFit world. When I first found CF in 2005 there were about 100 gyms and maybe 5000 of us doing it on a regular basis. We were self-proclaimed fitness infidels, rising up against a cynical entrenched fitness orthodoxy and industry. Man, it was cool, and we were cool because of that. Not only did (does) it work if done properly, but we all had that same kind of first flag planted buzz you get when you discover something that becomes a phenomenon. Think being in your local in the 80′s and Nirvana is the house band kind of cool. It was like that.

CrossFit, too, is now in the earliest days of its own third phase. Having turned away from the strong (at least outward appearing) emphasis on CrossFit as sport, the company has pivoted back to something that sounds and feels more like what we all were doing prior to 2010 or so. Quite frankly I was personally too close to many of the primary personalities in phases 1 and 2 to objectively assess the players and how they played. Where CrossFit places its emphasis now is where I always felt it belonged, high intensity functional fitness as health rather than as sport. Which “laser” will CrossFit emulate as it leaves the stages of exuberance? What kind of laser company will CrossFit, Inc. be like if it, like the femtosecond laser, is proven to be only one among several ways to achieve the desired outcome in fitness and health?

In my day job phase three means a femtosecond laser for LASIK but not for cataract surgery. I am largely indifferent to the companies involved.

 

Eyecare Out Loud Episode 7: EMR Follies Part 1

Here is the direct link to my “anything goes” podcast on eyecare. In this episode I introduce the background behind EMR and computers in medicine in general.

https://www.healio.com/ophthalmology/podcasts/eye-care-out-loud/episode-7

Copy and past into your browser, at least until I figure out how to put a hyperlink into this blog!

The End of the Age of Volunteerism

Ladies and gentlemen, we are gathered here today to mourn the death of the Age of Volunteerism. While there exist tiny spaces where true volunteers live and thrive in a bilateral exchange of freely given goodwill, by and large volunteerism has been extinguished by the actions of its historical recipients. Sunday marks my last day ever of hospital ER call, the end of 2 years of receiving token payment for making my expertise available following 25 years of doing so for free. My experience is typical, as is this denouement.

Once upon a time all of your doctors were in private practice. We all had tiny little cottage businesses, did our work, and billed you or your insurance company for the work we did. Some of us worked in tiny little groups, but it was the rare doctor who was part of a large group or business whether in a big city or out in the country. Even the slickest Madison Avenue internist was basically a country doc, just with a better, more expensive wardrobe. In addition to having a greater familiarity with our patients we also enjoyed a very clubby relationship with all of the other doctors where we practiced. There was a collegiality, a sense that we were all in the struggle together. Folks who shirked their duties, foisting them off on other docs, were quickly educated about proper protocol or left to toil alone.

Hospitals were different, too. Local or regional, they were hardly the gargantuan mega-businesses they’ve become. The org chart was shallow, and most local doctors were on a first name basis with the few administrators on the hospital payroll. You took call for the ER as a volunteer; the ER respected that you were donating your skill and your time and handled everything it could before calling you. Same thing for consultations. Your colleague only called you if they couldn’t figure out a problem or ran out beyond their scope of practice. There was a faint air of apology with each request, and a definite unspoken appreciation for the help that would be given. You helped because you were appreciated.

This is really no different from all manner of volunteerism in America. Smallish, closely knit organizations depending on the goodwill and generosity of members of their community pitching in to ensure success. Think local memorial 5K races, or CrossFit Games Regionals in the days before ESPN or the Home Depot Center. Countless small private schools that depended on the largesse and time offered by the families who sent their children there. You gladly accepted the opportunity to volunteer because you knew that without you the organization would not be able to function. You also knew that the recipient of your generosity not only appreciated your contribution, they really had no other options. Not only that, but if that organization somehow existed in your professional space you knew that it would never, not ever, abuse the trust necessary for volunteers to continue.

What happened? Money. Money and size and the distance that they create between an organization and its volunteers. Let’s go back to the hospital and the ER for a minute. Where once your efforts as a volunteer were deeply appreciated and those efforts rewarded with respect and care for your time and your expertise, the growth of employment of doctors by hospitals opened a gap between colleagues. No longer was there the esprit de corps, the shared notion that the primary target of our efforts was the patient was replaced by so very many doctors by the reality that they worked first for a business as faceless and uncaring as GM. Work that was once done by your colleague was now pushed to the volunteers whenever possible. It’s cheaper that way. Worse, boxes to be checked by the employed (to maximize revenue and minimize risk) meant demands made of volunteers, not requests. Worse, still, were discoveries that some “volunteers” were more equal than others: they were paid.

Innumerable examples are there for the picking. Some times it was just a case of laziness. Other times the insult was a clear effort to dump work on the volunteer. A critical care fellow requested a consult for acute narrow angle glaucoma. For those of you not medical this is one of the few “drop everything and go” consultations in eye care. When I arrived in the ICU I found a young patient with a black cornea who was mildly uncomfortable. I did what every highly experienced specialist does when they start a consultation, I asked the patient: “Hey, what’s up with your eye?” Turns out they had a blind, painful eye as the result of a surgical mishap, and surgery to remove the eye was already scheduled. Their discomfort was because none of the eye medications had been ordered; the fellow never asked. No doctor (or nurse) would have allowed this to happen in the Age of Volunteerism.

While this is nothing short of tragic in health care, it was inevitable once medical businesses were incentivized to grow ever larger. It is not confined to health care by any means. How do you think that volunteer at a Spartan Race feels when he learns how much his “team leader” is being paid? Have you ever “discovered” how much the Executive VP of your favorite professional organization is paid? As a people we Americans are generous to a fault. That generosity usually continues right up until we discover that we have been duped, and even worse that we have been purposely duped by the people who run the organizations for which we volunteer.

And so we gather here to mourn the passing of the Age of Volunteerism. Like so many things of wonder and goodness there remain pockets of resistance, little oases where the goodwill, honesty, and appreciation beget the kind of ebb and flow that made things so much better, kinder, more collegial at the apex of Volunteerism. My friend Tom Gardner was just named the president of the Society of Alumni of our Alma Mater. Tom has given tirelessly of his “spaces”, his timespace, brainspace and emotionalspace to help shepherd tiny Williams College as it flows on though time. Is this truly different? A tiny refuge from the Zombie Apocalypse of corporatization of all things to which we once volunteered?

We can only hope. Hope that Tom and those like him who continue to find places and causes where their volunteerism is met with what we in medicine have had to bid farewell. We can only hope that there will be places where being a volunteer means receiving the respect and appreciation and even a kind of love in return for what we have given. We can only hope that there will continue to be places where the incessant drive to grow ever bigger, size measured on a spreadsheet rather than by heart, will be resisted. For if it can happen in medicine, if volunteerism can be killed in what is arguably the most noble of all endeavors, I fear that it is doomed everywhere.

We mourn the end of the Age of Volunteerism. We wait with equal parts sadness and fear for arrival of whatever comes next.

 

Thoughts About Kate Spade and Anthony Bourdain at 28,000 Feet

As is often the case when flying I was rewarded for offering a greeting to my row mate on the plane with a bit of insight and knowledge I’d have missed had I not simply reached out a hand and said “Hi, I’m Darrell.” My momentary companion (we each moved to more spacious seats) had been a schoolmate of the recently deceased Kate Spade. He confirmed her years-long struggle with a depression that defied logic and was thus a depression that was as pathological as diabetes or heart disease or cancer. Opening my Sunday papers brings stories from the friends of Anthony Bourdain, also deceased, and his decades long struggles with the same demon disease.

Like so many others, both Mrs. Spade and Mr. Bourdain were killed by illness, cause of death: suicide.

First, a couple of statistics. Suicide is presently the 10th most frequent cause of death in the U.S. currently responsible for taking roughly 45,000 lives each year. I am a physician. Doctors die from suicide at a rate 0f 40 per 100,000, the highest rate of any profession and twice the rate of Americans in general. Suicide is the second leading cause of death among teenagers (behind accidents), having surpassed homicide for the first time in 2017. [As an aside, the U.S. loses more young lives from all causes than any other developed country. This drag on life-expectancy should always be considered when you compare the health outcomes of various countries] A very large percentage of these deaths occur in those who suffer from some kind of mental illness, of which depression is far and away the most common.

It is time for us in America to reframe our conversation about suicide for the good of those who are at risk as well as those who have lost a loved one for whom the cause of death was suicide. Let us start, as we should in all serious discussions, with the language we use. For decades at least we have used the phrase “committed suicide” when describing such deaths. It is well past time for us to retire this phrase, at least for people like Kate Spade and Anthony Bourdain. To commit is to perform a willful act while under the full control of all of your faculties. Commitment implies the performance of an action that is the culmination of rational thought. Outside of war, the act of taking a life after rational thought is the purview of the psychopath; it bespeaks the presence of evil.

People like Spade and Bourdain who are killed by suicide are not evil.

We will all come upon well-meaning entreaties from those around us offering help should one be considering suicide. We will see headlines and the like proclaiming that “Suicide can be prevented”. Can it? Can suicide be prevented by addressing suicide and the thought of suicide itself? By and large suicide is an effect, not a cause. Some suicides do, indeed, follow the rapid appearance of dismay and despair, and these may very well respond to the well-meaning aid of those who offer a phone number, an ear, or a ride to a doctor or therapist. For some, especially the young, suicide is an impulsive reaction to an overwhelming emotion. For those left behind these are the hardest for we all surely ask “what if”, and we all as surely respond “if only.”

There is suicide that kills as the consequence of illness too long in development, even with the best of care possible. Depression, Bi-polar Disease, Schizophrenia and their ilk sometimes prove untreatable in the exact same manner as cancer or heart disease. Suicide is the cause of death in the same way that liver failure might take someone with widespread cancer that began in another organ; the ultimate cause was neither the failed liver nor the suicide but the underlying disease. It is so very, very important for the family and friends and acquaintances of those who ultimately pass by suicide to understand and accept this, especially if their loved one was being actively treated. Here, in these circumstances, we the living must guard against “what if” and “if only” as if our own lives depended on it.

Because they do.

I have known you all, you who have lost and who are still here to remember. I am one of you. Friends and acquaintances, friends and family members of acquaintances–I, too, have losses. “What if” and “If only” haunt us all. For us, as it so often is, the solution lies in love and kindness extended not only to those who are suffering, but to those we have lost and most especially to ourselves. No one who loved us as we loved them would have chosen to hurt us in life; how they ultimately died was not a choice to hurt us in the passing. We will surely hurt but we must not allow ourselves to feel that we have been hurt on purpose. More so, in time we must forgive ourselves for that which we could not change as surely as we could not have saved the parent or the sibling or the friend who died from cancer. We must forgive ourselves, be kind and loving to ourselves and all of the others who share our loss, for the alternative for us is despair and dismay.

We can begin this cycle of kindness and love by choosing a different way to discuss suicide and calling it what it is: the cause of death. Do reach out to those you know who have been buried by despair and are drowning in dismay, for they might be saved. Fight for the right to do so. Do champion the recognition that mental health diseases that have no outward signs such as true depression are as real as an open fracture at the scene of an accident; they should be treated as seriously and with the same sense of urgency. Fight for the right to have these diseases treated the same way. Doing so will save lives. Love those you love as much as they will let you for as long as they are alive for the loving, and let them do the same for you.

Peace and grace be upon those who have lost loved ones who were killed by suicide. Joy and love to all who have stood with toes across the precipice and stepped back, and to those who were there to embrace them when they did.

 

Fitness or Sport? A Proper Place For High Intensity Training

The CrossFit Games Regionals were on ESPN yesterday afternoon. What? Wait. No? No, I guess you’re right. It wasn’t ESPN, was it. As it turns out the Games have shifted over to CBS Sports. Totally missed that memo. Of course, I only surf to the Games site once or twice a week anymore so I can be forgiven. Thankfully I was marooned at home with nothing left on either my Honey-Do list or my own Wish List, and ESPNU was all kinds of messed up so I couldn’t watch the D1 Lacrosse quarterfinals. Surfboring around cable I stumbled on the Regionals and received my annual reminder about what CrossFit is and who is supposed to do it.

In short the CrossFit Games as exhibited in this year’s Regionals is to CrossFit as the Indy 500 is to your daily commute: almost everyone needs to do the latter, but almost no one can, or should, do the former.

You could certainly say that I am treading on thin ice by proclaiming that you and I have no business doing anything but gawking at Regionals athletes doing full-on Regionals WODs here on .com. Fine. Here is why I feel this way; the incessant urge to emulate Games-level athletes and to turn every CrossFit WOD into a training session for competition risks the undoing of what makes CrossFit (and other high-intensity offshoots) a potential solution (or integral part of an irreducible Rx, to coin a phrase) in solving the population health problem in Western societies. It really could be as easy as eating fewer processed carbohydrates, being stronger, and training at relatively high intensity for periods of time in the 8-20:00 range. Stronger and leaner with greater aerobic capacity is all pretty much any of us needs.

Everyone who has ever owned a Box or coached a CrossFit class has seen the danger of extending the “you vs. you” competition outward into the “Sport of Fitness (TM)”. Clients who leave a gym because the trainer refuses to teach them how to do a CTB butterfly PU when they can barely do a single dead hang PU. Fledgling CrossFitters who insist on rebounding box jumps instead of stepping down because their times suffer when they do. “Linda” or “Diane” done As Rx’d with rounded lower backs, chins held high because, you know, you gotta Rx the Open WODs if you want to go to the Games. It’s really hard to exaggerate how disheartening it is to listen to a client say they are leaving a gym because they don’t feel like you are the best fit for them. Then you look at their data and discover that they are down 15% BW fat, have doubled their 1RM Deadlift, can now do “Fran” Rx’d in half the time they first did it with an empty bar and a green band, all injury-free.

Form, then consistency, then and only then intensity. This is what you need for fitness. The siren song of competition is strong, especially during our Games season. Shout out to those trainers, both within the CrossFit business universe and out, who continue to hue to this orthodoxy. Functional movements, irreducible exercises performed properly at a level of intensity that is high for an individual, coupled with a diet that is designed to fuel performance in the gym and in life is what we 99.9%’ers need. Distilling this prescription into a measurable and repeatable program is the essential genius of CrossFit. That some of us get to do it as part of a community is that much better; friendships formed through shared experiences, especially shared strife (and what is “Fran” if not shared strife), are also an integral part of being healthy.

After my (ca. 2006) WOD I sat down with some left-over steak and a handful of nuts to see how Dani Horan was doing in the East. A little sore and energized, the only thing that was missing was another CrossFitter there to join me in watching the spectacle.

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