The worried well

Patients who over-research their ailments sometimes do more harm than good.


Robert Burton
September 27, 1999 8:00PM (UTC)

I am out walking in the Marin headlands, enjoying the first sunny day in weeks, when a health-club acquaintance, let's call him Carl, draws up alongside me. No hello, no superficial Marin greeting. Instead he launches directly into "What do you think is the best treatment for prostate cancer?" Without waiting for me to answer, he recites a litany of possible treatments. "Is it surgery, CAT scan-based radiation, brachytherapy or proton beam?" Carl is wearing hiking boots and cutoffs, and looking the well-tanned picture of health.

"Any particular reason for asking?" I say. Carl is directly in front of me, blocking my path. He hunches over and points to his mid-abdomen, about a foot above his prostate.

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"I feel something different. Maybe an ache. It's hard to describe."

"Do you have a family doctor?"

"Already seen him. He says it's nothing. But, you know, he's just a GP. So, which treatment do you recommend?"

"Aren't you being a bit premature?" A single storm cloud gathers overhead.

"I've spent all morning online. The Johns Hopkins Web site says -- "

"Wouldn't it be better to wait until you've at least had a biopsy," I kid, hoping to defuse his anxiety with a little humor. No such luck.

"Yes. There's the needle biopsy, and the open biopsy, and the stereotactic-guided ... Any opinion?" he asks.

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"Your doctor did the appropriate tests and said not to worry?"

"Uh-huh. But ..."

The sun dips behind the cloud. I want to follow.

I have known Carl for 10 years. I have nursed him through non-existent melanoma, bowel cancer, cardiac disease, fibromyalgia, you name the condition, Carl thinks he's had it. I like Carl. He is smart, humorous and well-read. But he is incredibly anxious and could try the patience of Job. In health-related matters, he is his own worst enemy and probably drives his doctors crazy.

He is not alone. When I was in medical school, we were taught that the majority of medical office visits were for reassurance of the "worried well." Their endless questions sometimes do more harm than good.

Anxiety over health seems to be increasing precisely at the time that technology is producing major medical advances. The two may be related. When there was negligible treatment available for most conditions, there was little value in worrying. Early detection wasn't relevant. Now, with the improved treatments, God forbid if that little ache is a warning sign as opposed to a fleeting nothing.

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I, too, am a worrier. So was my father. As a pharmacist, he had an entire medicine cabinet filled with pills. Most were homeopathic and were there just in case something were to go wrong. I learned from a master.

So, what makes me different from Carl? Very little, except that my anxiety embarrasses me, and I try not to show it. I make jokes and try to disarm my doctor with self-deprecating humor. All well and good, except when something goes wrong, even theoretically. I get sweaty waiting for the results of my yearly routine blood work.

Joseph LeDoux, a prominent neuroscientist and author of "The Emotional Brain: The Mysterious Underpinnings of Emotional Life," has suggested that a single frightening episode can trigger a lifetime of fearful behavior, and that the behavior is not immediately accessible to conscious control. Once the response is laid down, it takes precedence over rational thought and is perpetuated through the formation of powerful neural connections. Any repetition can become a hard-to-break habit. Anxiety generates anxiety; the pathways build upon themselves, which is why, once the pattern is established, it is so difficult to break. I have tried everything -- deep breathing, meditation, positive thinking -- but still get dizzy when the lab results come back. I sneak a peak out of the corner of my eye, ready to be alarmed.

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Nevertheless, Carl is annoying. He operates without a shred of self-awareness. There, I've said it. It's not the anxiety that's irritating. It's that stubborn refusal to know when you are anxious and to know when enough is enough. I encourage everyone to ask as many questions of his doctor as is reasonable. But I also ask people to recognize when the questioning has shifted from a genuine need for information to needless interrogation because the person is simply unable to be reassured. If we cannot control anxiety, we should at least be able to acknowledge its effect on our behavior, and be aware of how that affects how our doctors see and treat us.

I have a small office with a single consultation room. I see one patient an hour. That should be enough for most problems, except for those who come with a single-spaced typed litany of complaints. There is nothing worse than the hot updraft as a ream of notes is extracted from a briefcase. "I thought these might be important."

Luckily, I have a trap door whenever these situations arise. I can slip out of my office because my secretary is a marvel at spotting trouble. "Dr. Burton, you have an emergency." The anxious are relieved to know that they are not the emergency. They leave disappointed but vaguely pleased.

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Carl is still blocking my path, inquiring about post-op impotency. He has a friend, and that friend has a relative who knows a man who ...

Just tell him you're busy, I say to myself. He has his own doctor. Right. If I could get a word in. Or even walk away. But I can't do that. I'm superstitious, and believe in good and bad karma. If I walk away from him, someday someone might walk away from me. I am stuck.

"Do you know what your problem is?" I say with exasperation. "You lack faith."

He sneers and says, "This isn't about God. It's about me. Besides, I've looked him up and he doesn't exist." He laughs. A good existential joke. "God is not online. God does not have a Web site, or an e-mail address."

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"Not that kind of faith," I counter. "It's difficult to explain."

Sixty years ago, we didn't even have penicillin. Treatments for most conditions were symptomatic, palliative. We graded our physicians not on skill (with the exception of surgery), but on bedside manner. The doctor's role was often clerical, a compassionate handholding against fate's furies. Doctors acted as God's intermediaries, and we judged them accordingly. Is it any wonder that physicians saw themselves as godlike?

Faith was a combination of knowing that the doctor was doing the best he could, and recognizing that much of life was not ours to control. Some called it accepting your fate.

But fate has become an obsolete word, synonymous with nihilism. Patients even resist words like terminal. "Certainly something can be done," they insist.

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We look back with nostalgia to the time when we could trust our doctors. But keep in mind we put our faith and souls in their hands, in large part, because we had no choices.

When I was a young doctor, I often dismissed minor complaints, mine and others, by saying, what's the difference? Take an unexplained lump or bump. Forget it, I'd tell myself, knowing that leukemia, lymphoma and Hodgkin's disease were uniformly fatal. I worked overtime to develop a personal existential indifference. Now, every irregularity makes me anxious, precisely because something can be done.

As patients, we need to be informed and self-observant. Under the best of circumstances there are limits to a doctor's thoroughness and ability to spend enough time fully evaluating the symptoms and possible causes. He cannot know your body in the same way that you do. But medical information is a two-edged sword. Ignorance is not bliss, yet endless rumination over what-ifs and remote possibilities is equally harmful.

Carl is now grilling me on post-radiation proctitis (inflammation of the rectum). "A real pain in the ass," he adds, not realizing how accurate he is.

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One of the unfortunate aspects of the increased access to virtually all medical information is the lack of corresponding experience. You can look up photos of the typical appearance of melanomas on a dermatology Web site, but that does not substitute for having seen and followed thousands of moles. It is years of experience that teaches us when to worry and when to reassure. Young doctors, fresh out of training, are almost always the most informed. They are up on the latest literature. But they are also prone to excesses more than seasoned doctors precisely because their knowledge is not backed up by gut feelings born from experience.

Experience is no substitute for hard fact. You can make the same mistake over and over again and refer to it as "in my experience." And raw facts without the experience to interpret them can create the illusion of knowledge, but contain no underlying wisdom.

Experience and facts. We need both. Web sites cannot provide experience. But then again, an ill-informed doctor's experience may not be enough.

And we need to find doctors we can trust. Without trust, we are left fending for ourselves, a situation that can only lead to anxiety and fear. But unfortunately, trust requires relinquishing control and is based upon a certain fatalism that we are no longer willing to tolerate.

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Buddhists refer to something called moderation, the middle ground. It's a concept that's easy to say, but hard to accomplish. The middle way requires faith, an acceptance of life's vagaries. We need to abandon the idea that we can control all illnesses but at the same time, we must be our own health advocate.

Carl shrugs. "I hope I haven't bothered you," he says as he pokes at his abdomen one last time. "Maybe you're right. Maybe it is nothing. I certainly hope so."

Me too.


Robert Burton

Robert Burton, M.D., is the former chief of neurology at Mount Zion-UCSF Hospital and the author of "On Being Certain: Believing You Are Right Even When You're Not." His column, "Mind Reader," appears regularly in Salon.

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