Medical knowledge is an iris that once opened is never shut. It makes the world familiar and tractable as well as uncanny and wild. It is partly why people fear doctors and why, increasingly, I fear for myself. It has complications I never expected.
Even if I could send the younger me a telegram alerting us to this oncoming trouble, I am sure my boyish enthusiasm would never let me sign for it. All I wanted then was more-more information, more experience, more understanding. I remember the determination my medical school classmates and I brought to slide after slide after slide that had to be memorized. We were geese demanding the gavage to fatten ourselves with facts since success depended upon how easily we could regurgitate them.
There was no pause in the struggle to learn what was, in essence, a dictionary. The result, a vocabulary cleaved from its grammar, meant I had the ability to name but not necessarily to comprehend. I suffered a dyslexia that plunged me into a looking glass city of epidermal horns, bulging goiters, pulsating carotids, and saccadic eyes.
By the second year of medical school my visual range expanded beyond a mere cataloging of anatomical variations to include a more imaginative axis. I could detect in a palsy the traumatic yank out of the birth canal; I could envision in an abscess the hurried recruitment of lymphocytes rallying to a fight. Everything and everyone around me became a specimen for study in my desperation to develop the means to connect seeing with knowing- the opening move in diagnosis.
In medical school, my desire to make these connections outpaced my readiness, and predictably led to awkward moments. Once on a beach I announced to a friend that he had extra nipples- it left us both embarrassed. Another time, I diagnosed myself with Sezary syndrome. An actual doctor at Student Health gently informed me it was just dry skin.
As grueling as medical school was, it was merely the on ramp to residency where knowledge and reasoning began to develop into clinical judgment. The place I trained, Bellevue, functioned like a multistoried MASH unit: frenetic, disordered, big-hearted. And, in 1988, as a front line in New York City’s HIV epidemic, it was a place where I thought I could make a difference.
At the start nothing seemed impossible. I believed not just that every mystery could be solved, but would be solved. I believed there was some deep logic to the world and when it did not appear that way it was only because I had not yet figured out how all the puzzle pieces fit together. It might take time, but I had an almost messianic faith in my ability to do it.
I was equally sure that my convictions were no different than those of my fellow trainees. Our belief in answers was as much an expression of our youthful exuberance as it was the product of our education. We were promised a language, with the precision of mathematical logic, to describe the relationships between what is observed, symptoms, what is discovered, signs, and what is occurring, diagnosis.
Few things, sadly not food or sleep or family, were more important than making diagnoses. Diagnoses were the measure of us all. Days and nights were spent careering from the bedside to radiology to medical records to the cramped house staff lab in search of clues. These moments, often in the solitary darkness before morning, were when I most felt my place in the long line of physicians learning their craft from patient to patient to patient.
The stakes were always high and not making a diagnosis was never an option. Intubated ICU patients were regularly convoyed at any hour to CT scans, surgeons bullied to the bedside and every body cavity that was accessible by needle or tube was probed for the expected and unexpected.
Each of these held their own particular challenges but all were unified by our conviction that we should and would do everything possible to make a diagnosis. At times this meant sedating delirious patients and when drugs were not enough we restrained them.
Sometimes getting a few of us to hold a patient worked well enough but other times, and especially for lumbar punctures, more enhanced methods were needed. A white bed sheet was twisted the way you would a towel to snap at someone, and then tied firmly around the neck and knees. This fixed the patient in fetal position. Once the spinal fluid was obtained the needle was withdrawn and the patient released.
This method feels barbaric to me now, yet was not outside the norm at the time. Demented patients were kept in four-point restraints and brain dead prisoners remained shackled to their beds. While I can rationalize the systemic failures I remain troubled by how readily I used force to get what I needed- a diagnosis.
That this diagnostic barbarism existed as a companion to compassion and concern is one predictable consequence of a culture that justified most things when in the hot pursuit of disease. A diagnosis was evidence of a dedication to patient care. The common moral stance was that everyone deserved every bit of our attention and intellectual stamina. A diagnosis was an answer and we all had faith in the healing power of answers.
Outcomes were not much talked about. We changed patients regularly- rotating every two weeks or month- so there was little need to concern ourselves beyond identification of the disease. and besides, iIn the scrum of training, outcomes were irrelevant since success was measured and still is, by making the correct diagnosis.
It’s axiomatic. When it comes to diagnoses, right is better than wrong. While we are all taught that common things happen commonly- the prosaic, “when you hear hoof beats think horses, not zebras” - in training I heard a master diagnostician turn it upside down. With an almost conspiratorial glee, he said, “but wouldn’t we really rather see zebras?”
That corollary has stayed with me. I even used it early in my career when it was my turn to teach.
It speaks to the thrill of diagnosis and the joy of solving hard problems. It justifies lonely hours of study and glorifies obscurity. It exalts the power of knowledge to find form in the formless and name the nameless. And it also speaks to another truth - physicians are like big game hunters. Diseases are our prey and each of us holds inside a list of ones we've seen and ones that one day we would like to have in our sights.
We are not alone in this preoccupation- medical mysteries are a staple of talk shows and primetime dramas. Finding resolution, either whether on the saccharinely earnest host’s couch or from a crocked and grizzled TV-doctor, is how we fortify our belief in an orderly world that acquiesces to our desires. Practice has taught me that this is just a convenient lie.
It started with a patient. She came to me about her breathing. She had suffered some reversals but after a period of hard work, her life was back on track- that was something I identified with. Unfortunately, I never found a way to convince her to stop smoking and now no longer needed to. Her metastatic lung cancer was as obvious to me as it was unexpected to her. The visit was spent attending to the formality of making a diagnosis but my thoughts were elsewhere. I knew what was to come. I knew I could ease the pain but there would be no lasting relief. I knew that I would be there as a support but in the end the path was only wide enough for one. I knew it was unlikely that she could live another year.
I knew this because I had seen it before;. N not the cancer that was her own singular experience but many others-cancers of the colon, of the liver, of the blood. And not just cancers but failing hearts, seeping memories, galloping infections, lives rent by depression or alcohol or drugs. Goethe said that, “you only see what you know” and now having spent half my days in the company of the sick, I know life’s trajectory. I see things not as they are but how they can be, might be or will be. I am facing full on the human cost of illness-prognosis. Time has revealed itself and I am scared.
So much of my career has been about searching for and making diagnoses that I have often missed the cost of being right. I listen, I soothe, but my words, my diagnoses, inexorably alter lives.
I cannot escape that anymore. My patients, some I have known for over twenty years, are getting sick and dying. My surprise at how difficult this is humbles me. All my answers, all my knowledge does not help. I fantasize that closing my eyes, even for a moment, might resurrect our separate innocences. That would help me forget they have entrusted me to unearth their illnesses.
I would also like to forget I’ve entrusted my doctor to do the same for me.
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Stuart Lewis, MD
NYU School of Medicine
General Internal Medicine
stuartlewis@icloud.com