By Jack Coulehan
Special to The Washington Post
Tuesday, October 6, 2009
For years I've heard friends describe experiences of being caught in a web of excessive and unnecessary medical testing. Their doctors ordered test Z to investigate a seemingly incidental finding on test Y, which had come about because of a borderline abnormality on test X.
I often wondered why test X was done in the first place. As a primary care physician, I would have treated them for the likely diagnosis and done diagnostic tests -- especially a series of diagnostic tests -- only if they didn't respond as expected.
By the time my friends told me these stories, their original symptoms had disappeared (with or without specific diagnosis and treatment) or my friends had sunk under the weight of a new symptom or anxiety about the lack of an explanation for their problem. Many of the tales also included delays in receiving their test results, frequent referrals to specialists and poor coordination among health professionals.
Naturally, I'd express sympathy or outrage, whichever the speaker seemed to expect, but internally I'd pat myself on the back. I felt fortunate that there was absolutely no way I'd ever be stuck in such a scenario. After all, I'm not only an experienced physician but also an advocate -- in fact, a teacher -- of standard-of-care practice. When I get sick, I told myself, they'll have to do it by the book.
That was before last Easter.
For a very chilly 6 a.m. Easter sunrise service, my wife and I had stumbled to the local beach. But the cold wind didn't bother me. All I could think of was the weird pain in my left eye. A strange prickly sensation and occasional needlelike stabs in my eye and forehead had begun the previous evening. Of course, I attributed these to tension and fatigue, as I always do. But suddenly the eye pain escalated to a breathtaking degree. As the priest gave his sermon, I tried to figure out what was wrong. Vision, normal. Eye movement, normal.
Left side of forehead, prickly, burning. Rash? None that I noticed.
"How does my face look?" I whispered to my wife.
"Huh?" She was half asleep, but she looked closer. "A little red, I guess."
"There's something wrong," I whispered. "I think it's shingles."
I must have diagnosed shingles more than a hundred times during the past 25 years. This had to be it. My symptoms were confined to the distribution of a single nerve, the ophthalmic branch of the left facial nerve. The strange unpleasant feelings must be stemming from nerve irritation. Shortly, I was sure, I'd develop a characteristic rash in the same area; an itchy, crusting rash similar to chickenpox, which is caused by the same virus.
After chickenpox heals, the virus doesn't depart the body; rather, it lies dormant for decades until something -- stress, trauma, immune deficiency or simply aging -- weakens the body's defenses and allows the virus to spring to life for an encore performance. The good news is that the encore, shingles, usually remains localized to the skin affected by a single nerve -- in this case, the upper left side of my face. The bad news is that shingles can be extremely painful, takes several weeks to heal, and, worst of all, can result in permanent nerve pain.
By the end of the Easter service, I had a treatment plan firmly in mind: an antiviral drug to fight the culprit, a steroid to decrease inflammation and a very strong pain reliever. Given that it was Sunday morning, and a holiday as well, instead of calling my internist or one of his partners, I decided to visit the emergency room of the teaching hospital where I work to confirm the diagnosis and get my prescriptions. My wife drove. I sat in the car with my eyes closed, wondering how it was possible for me, at age 64, to have turned into one of those elderly people who suffer from shingles.A Tiny Doubt
The physician on duty was a young colleague, who immediately agreed with the diagnosis. Yes, she said, it's the earliest stage of shingles. She checked my eye with a slit lamp and determined that the cornea wasn't involved. Good news, because if the virus attacks the cornea, it can cause permanent scarring and vision loss. She asked me to rate my pain on a scale of 1 to 10. Even though it was the worst pain I'd ever experienced, I said "8 out of 10" so as not to sound melodramatic. She brought me a shot of morphine. And she suggested the same treatment plan I'd come up with.
"Before you go," my colleague mused, "just for completeness' sake, maybe we should have an ophthalmologist and a neurologist take a look at you. What about it, just in case?"
"I don't know . . . I don't think so . . . well, okay . . . maybe it's a good idea."
We waited an hour for the on-call neurology resident to show up, and then a second hour for his boss. Meanwhile, the ophthalmologist appeared and gave my cornea and everything underneath it a clean bill of health. He said I had classic shingles and went home. Things didn't go as well, however, with the attending neurologist, who noticed very mild drooping of my left eyelid, a finding soberly agreed to by the resident but invisible to my wife and, when I looked in the mirror, to me. The neurologist recommended an immediate MRI of my head, just to make sure there was no mass. But why would a brain mass cause symptoms from that particular nerve? It made no sense. But in my morphine-induced drowsiness I thought, okay, it might be interesting to have an MRI scan -- a life experience I'd thus far avoided -- and an hour or so later we walked to the machine.
After the scan, we waited 90 minutes. My wife said, "If it were just shingles, they wouldn't keep you this long." Then 20 more minutes. "There's something you aren't telling me," she complained. By that time my eye had exploded again. The neurology resident finally appeared to tell us that my MRI showed a possible abnormality in the cavernous sinus, a large pocket of vein at the base of the cerebral cortex. It was a questionable finding. In other words, it didn't look quite normal, but, at the same time, it didn't have the specific features of a definite abnormality.Okay, Let's Do It
But when the attending neurologist returned from lunch, she seemed excited that I might have a blood clot in the sinus -- an unusual finding, she said, consistent with the redness around my eye. "Did you have any recent dental work?" she asked, searching for an infection as a possible cause of venous blockage. (I hadn't.) The reasonable part of my mind cried, "This is crazy! Get me out of here!" But a twiggy little nugget deep in my brain asked, "What if there is something serious wrong?"
Surely, if it were simply a case of shingles, our hospital's high-powered radiologist and neurologist wouldn't raise these questions. Maybe I've developed this blood clot as a result of undiagnosed cancer. I mentally reviewed a number of my own patients over the years who had developed unexpected blood clots in their legs as a first indication of cancer. Maybe the same is true for the cavernous sinus. By then, I was desperate for more morphine.
"What we need to do," the neurologist explained, "is get a CT scan with contrast. This'll clearly define the vascular structures in your brain, so we'll get a good look at the cavernous sinus." Okay, I thought, do it, do it, let's get it over with.
In the end, my head CT was completely normal, as was the second MRI they conned me into having. In fact, when the official reading of the original MRI appeared a day or so later, it was also called normal, with not even a mention of a questionable abnormality.
It was drifting toward a very cold, dark evening by the time I was sent home. During the intervening hours, my eye had swollen shut. From beneath the morphine, I could feel what was definitely a mass of electric worms crawl continuously over my left forehead and the area around my eye.
And a faint but definite rash had appeared on my creepy-crawly skin: the characteristic early phase of shingles. The original emergency physician had gone off duty, signing me out to a colleague who said he would go along with whatever the neurologist decided.
When she finally appeared, her principal neurological concern was that I get a prescription for gabapentin, explaining that it is the best drug for nerve pain. She seemed oblivious to the fact that I was, right then, suffering from overall severe pain, as almost everyone with shingles does. Rather, she was interested in treating the chronic neuralgia that might develop later, because neuralgia is more specifically a neurological problem.
She was also obtuse enough to remind me about the dangers of using narcotics to relieve pain.
Either this woman was a profound masochist, or she had never experienced real pain. I found it difficult to refrain from strangling her.
"Listen up," I said. "Give me a prescription for Vicodin or Percocet." So I wound up that evening with prescriptions for valacyclovir, prednisone and Percocet, the exact three-part regimen -- a strong antiviral drug to fight the shingles, a steroid to decrease inflammation and a really strong painkiller -- that I'd come up with on the beach and that the emergency physician had ordered 12 hours earlier.Reviewing the Great ER Caper
In a few weeks I received a statement that my insurance company had paid the hospital a humongous $9,000 ER bill. By that time the worst was over. The swelling had gone, the rash had dried and my severe pain was largely resolved.
Unfortunately, the weird experience of chronic nerve pain had only just begun. It's definitely unpleasant, but, to my way of thinking, not a sufficiently good reason to ingest the hundreds of doses of gabapentin that the neurologist suggested.
I'd also come to grips with my feelings about the Great ER Caper. At first I felt angry and embarrassed about spending a whole day at the hospital, subjecting myself to multiple expensive and unnecessary tests and playing along with the culture of medical overkill that I've spend decades teaching students to avoid.
How stupid! Why didn't I just phone my internist or the person taking calls for him? When I didn't do that and went to the ER instead, why didn't I just answer the first physician, "No, that's not necessary," when she suggested referring me to a couple of specialists?
Having undergone the neurology consult, why didn't I say, "Let's wait and take another look next week," when the neurologist proposed urgent imaging studies to check a borderline physical finding (the supposedly drooping eyelid) that wasn't visible to others? Even after submitting to the first MRI, why didn't I question the unexpected finding, as it suggested a rare condition that was inconsistent with the common illness that my other symptoms and signs indicated?
I don't have a good answer to any of those questions. It's easier to understand, however, why I -- the patient -- was faced with them: My doctors recommended services that were simply not indicated at the time. Unnecessary testing, inappropriate consultation and uncoordinated care are rampant in ERs, as they are throughout our health-care system. Did my status as a local doctor and professor make me more likely to receive excessive, VIP treatment? Perhaps. But I also know full well that in today's medical culture, we almost always behave as if more is better.
Each new machine creates pressure to expand the ways it can be used. In most settings, the doctor has far greater incentive than disincentive to order excessive services -- that is, those that aren't indicated by practice guidelines or evidence-based medicine.
How can we make stories like mine less common?
The only way is an approach to health-care reform that encourages well-coordinated, standard-of-care practice and simultaneously discourages the irrational, shotgun approach to medicine.
One thing's for sure: I've lost the smugness and condescension I often felt when listening to others' stories about being trapped by the system and manipulated into excessively complex and specialized medical situations. Unlike most of my patients, I actually knew what my diagnosis was and what to do about it, but I learned how difficult it is to remain objective when you're feeling very sick.
I understand now how all those people could have been so gullible, so easily manipulated by the system.
Now that I'm one of them, that is.
Jack Coulehan is a professor emeritus of preventive medicine and a senior fellow at the Center for Medical Humanities, Compassionate Care, and Bioethics at Stony Brook University in New York. This essay is excerpted with permission from the Narrative Matters section of the September/October edition of Health Affairs. The full, original essay is available online at HealthAffairs.org. Comments: firstname.lastname@example.org.