Incidental Illness

Doctor's officeby Danielle Ofri
Health Affairs

It took several weeks after residency had ended for my body to recover. And it took even longer for my mind. I couldn’t quite believe that I would never again spend another night in a hospital. Never again find myself wandering deserted hallways at 3 a.m. Never sweat over another IV in a veinless drug user. Never have to sleep in used sheets, shivering for lack of a blanket. And I would never again have to introduce myself as a doctor-in-training. I was finally a real doctor, whatever that meant.

Unable to decide whether to pursue a specialty fellowship in cardiology or nephrology, I decided to do some temp work. I hooked up with a locum tenens agency that was able to provide short-term assignments around the country, usually filling in at short-staffed practices until full-time doctors could be hired. My plan was to work for a month and then travel for as long as the money would last, then work again. But I had to work first in order to start the cycle. I quickly discovered that the academic medical cocoon in which I was hatched did not, by any means, represent the way most people received their health care. Most people saw their doctors in small offices or community-based clinics. They rarely set foot inside of a huge tertiary care hospital like the one in New York where I’d trained. Most doctors practiced in small groups, without the benefit of twenty-four-hour availability of hematologists, pulmonologists, and cardiovascular surgeons.

There were other, more subtle, differences. How, for example, in this quiet world of outpatient medicine does one know when a life is saved? In residency training, saving a life was always dramatic. It was a uniquely physical and sensory experience: pounding the chest and shocking the heart, scrambling for a pulse, smelling the singed flesh, cringing at the violent intubation and inelegant intravenous lines. The perspiration built beneath polyester scrubs as the brain battled to think clearly amid competing shouts and jostling bodies and bloody gauze. There were no subtleties to confound; everyone knew when a life was saved or lost.

In the outpatient setting it wasn’t clear when I was having any effect on someone’s life, let alone saving it. I found myself sifting through a morass of vague, unrelated complaints, wondering, “Is this the symptom that really means something?” There was no overhead operator paging me to an emergency, stat,and no dramatic restoration of the heartbeat informing me that my task was accomplished.

On my second day in a clinic in northwestern New Mexico, a nurse handed me a chart. A patient was seeking referral to a psychiatrist, and the clinic required a standard panel of blood tests before any referral. Normally the nurse would relay the results, but the computer had flagged one value as “abnormal.” By protocol, the chart had to be reviewed by a physician. I happened to be standing around sipping tea, so I was drafted.

The academic physicians from my residency program disapproved of routine blood tests on healthy patients. They insisted on scientific documentation of the risk-benefit ratio of each and every test, disparaging physicians “out in the community” who weren’t up to date on the latest research and couldn’t cite the tenets of “evidence-based medicine.”

I launched into a tirade to all who cared to listen. “There is no hard evidence,” I exhorted, “for this kind of testing.” I waved the lab sheet dramatically in the air. “This is a perfect example of unnecessary testing that could lead to more harm than good for the patient.” Eager to flex my scholarship, still gleaming from residency and having just taken my medical boards, I argued that the vast majority of abnormal lab results in healthy people were clinically inconsequential. They would necessitate costly and risky additional tests but would most likely turn out to be “false positives.” But preach as I might about the theoretical risks of routine testing, a human being still waited in my office for the results.

Paul Davis (not his real name) was a fifty-six-year-old white man who had recently retired from his job as a machinist. He had worked in an asbestos-laden environment, giving up cigarettes only after a coworker succumbed to lung cancer. He had no medical history and continued to lead a physically active life. His main complaint was intermittent depression. One of his children had been killed in a car accident a few years back. Each year, as the anniversary approached, he found himself unable to sleep, plagued by nightmares and feelings of hopelessness. He was cognizant of the pattern and would routinely seek professional help, going into therapy and taking antidepressant medications until the symptoms abated.

On the lab sheet Mr. Davis’s iron level was mildly elevated. If clinic protocol didn’t require me to discuss this with him, I might have ignored it as a false positive because he was so healthy and had no family history of medical problems. Earlier I had commented sarcastically to my colleagues, “What’s he going to have, hemochromatosis or something? He’ll probably die of lung cancer from cigarettes and asbestos before anything else gets him.”

I sat opposite Mr. Davis in the tiny examining room. His rough-hewn features reflected a lifetime of physical labor. His hands were too big for his body, and he shuffled them awkwardly. Attentive green eyes flickered behind several days of beard growth. I told him that I didn’t think the iron level was significant, but because of the clinic protocol I would have to do another few blood tests.

I drove home grumbling to myself about the lack of academic standards in the community. The air was stiflingly dusty, and I was forced to keep my windows closed. In the back seat of my rental car I stored both t-shirts and heavy sweaters to keep up with the blistering hot days and the chilly nights. The town was located near the 300,000-acre Navajo reservation, and the clinic was frequented by a mix of Navajos, Hispanics, and Anglos, united by their lack of private health insurance. The clinic itself was tagged onto a strip mall, tucked away at the far end of a vast parking lot behind a low-end department store.

I drove through the shabby downtown toward my hotel. The squat buildings had turquoise trim on adobe-colored brick. They could almost be quaint but looked too wearied from suburban onslaught. The pawnshops and mobile home dealerships that lined the main road were shadowed by starkly majestic slabs of ochre granite. I stopped at the public library to read the Sunday New York Times—my weekly dose of civilization, even if it didn’t arrive until the following Wednesday.

The next day Mr. Davis’s lab results clearly indicated hemochromatosis, a serious metabolic disorder of relentless iron deposition in the body’s vital organs. My jaw froze and my heart sank as the numbers on the page metamorphosed into the clinical reality of liver disease and heart failure. Shame crept over me. How could I have been so cavalier and so utterly wrong? I had just taken the boards, hadn’t I? I was even more horrified to note a flicker of pride beneath the shame, a carnal spark of bravado at making such an “interesting” diagnosis. I mean, it wasn’t every day that a rare metabolic disorder was diagnosed in a general medical clinic—the kind you had to look up in the textbooks to remember the details. Even through all my years in residency, I’d never diagnosed hemochromatosis.

My clinic colleagues were congratulating me. In a world of common colds and stomachaches, hemochromatosis was downright exciting. “You just saved his life,” they said. “What a lucky man!” Lucky? I wasn’t so sure. I had to tell this man sitting before me that although he felt healthy, he in fact had a genetic disease that was potentially fatal. Every organ of his body could be destroyed by the iron. The liver was at particular risk. He required immediate treatment and a needle biopsy of the liver. His siblings and children needed urgently to be tested.

Mr. Davis looked intently at me with a trusting, almost innocent, expression. The fine bristles of his unshaven beard framed his face with a shadow so that only his green eyes stood out. They didn’t blink much or flicker; they just rested on my gaze. And then he uttered those awful words: “Are you sure, doctor?” I drew in a painful breath. Sure? What does it mean to be sure? My mind raced, checking and rechecking the facts, scouring the corners, chasing the doubts. When had I heard that lecture in med school? Where was that part on the boards? Sure? What a rotten word. What an insidious concept. No one can ever be sure about anything. Wasn’t that Heisenburg’s Principle of Uncertainty? Who ever condescended to invent such a word anyway? What was it doing in our lexicon? Deceitful bearer of false security—it ought to be banished from the dictionaries. It didn’t deserve to be roving the English language with all the other honest, well-meaning words. “Yes,” I squeezed out. “I am sure.” Mr. Davis nodded. I braced myself for the instinctive panic and the flood of anger or fear or bewilderment, but he was quiet. His eyes continued their even gaze, his lids remained calm. His hands shuffled between themselves as they had been doing all along. And now he was nodding with a gentle periodicity.

Speak, my mind demanded. Say something. React. Get angry at me. But Mr. Davis stayed as he was, eyes gazing, head nodding, hands shuffling. My own discomfort bubbled over, and I burst in with unbidden answers. “The iron builds up in your body, you see. We don’t exactly know why, but you absorb more iron than most people. When people are severely low in iron, we give them blood. In your case we do the opposite; we take away blood. It can slow the progression of the disease.”

“When would you do that?” Mr. Davis asked soberly. “Today,” I swallowed dryly. “Now.” Mr. Davis continued to nod. “And,” I added, “we have to check your liver. That’s usually the first organ to be affected. A needle biopsy will tell us what stage the disease is at.” Mr. Davis was quiet and almost complacent. Gazing, nodding, shuffling. Why wasn’t he angry at me for my falsely reassuring words yesterday? Why wasn’t he angry at this horrible disease that could eat away at his body? Maybe, I wondered, a strange disease with a big, fancy name and lots of treatments was trivial after the loss of a child. Maybe his body had already been eaten away by grief, and there wasn’t much left for the hemochromatosis.

I watched Mr. Davis in his suspended state. Did I really save his life? Perhaps, but I didn’t feel the elation of success. If I had applied the rigorous scientific beliefs of my academic training, he never would have been tested, and his illness would not have been detected at such an early stage. More than that, though, a healthy man had just been sentenced to a life of illness. How could I rejoice at that? Physically, his body was no different than it was ten minutes ago, but now he was a man with a “problem.” His medical records would henceforth commence with the weighted words, “a fifty-six-year-old white man with hemochromatosis…”

So many decisions in his life—medical, financial, social—would now have to pass the litmus test: But what about the hemochromatosis? Could this sinus medicine now hurt me? Can I eat raw seafood? Travel? Play sports? Buy life insurance? What if I want to apply for a job? With all these medical expenses, can we afford a vacation this year? Should I tell my friends? Mr. Davis had no symptoms with which to verify his brand-new illness, nor had he any medical knowledge with which to understand it. He had to believe a handful of words from an out-of-town doctor whom he’d never met before.

I carefully printed the word “hemochromatosis” on a slip of paper while the nurse prepared Mr. Davis for his first phlebotomy treatment. As his iron-laden blood dripped slowly into the bag, I was overwhelmed by the quiet drama unfolding around me. It wasn’t like a code in the hospital, but the intensity was unmistakable. It reminded me of watching a great dancer, in whom a subtle gesture, with the right music, could deliver as much emotional impact as a troupe of whirling, leaping acrobats.

I said goodbye to Mr. Davis after his treatment. He was about twenty feet down the hallway when he turned and called out to me, “Hey, doc, what about my depression? Will I still get my medications? Can I still see the psychiatrist?” I froze in my tracks, my skin bristling. I had completely forgotten the reason he had come to the clinic. In all of the tumult surrounding his new asymptomatic illness, I had lost sight of the problem that was really giving him symptoms. I quickly reassured him that he would get his referral to the psychiatrist, noting bitterly to myself that I had provided him with far more fodder for discussion than he had likely anticipated. I grabbed a prescription pad and fished in my pocket for a pen. I started to scribble down the prescription for his antidepressant, but my hand halted in midsentence. What about the hemochromatosis, I thought, a chill running along my fingers? Would I make things worse? Could this medicine interfere with the hemochromatosis? I didn’t want to get myself in any trouble; what would someone say if they saw I’d added extra medications just when this disease was diagnosed? Maybe I should hold off on any new medicines until we knew what stage his disease is at—the less complicating factors the better.

Complicating factors? The pen nearly slipped from my grip. What could be more complicating than the depression associated with the death of a child? How could I even consider not giving him this prescription? I caught my sliding pen. I scratched the ink deep into the pad to make sure it was legible and permanent. I signed my name at the bottom, then stopped to catch my breath. I’d obviously want to pick the antidepressant with the least interactions with the liver, but the fact that my instinct had been to avoid it altogether, and more for my piece of mind than anything else, gave me the shivers. I’d almost committed malpractice—moral malpractice. I’d almost withheld this medicine he needed so desperately.   (from Health Affairs)