It's the patient, stupid!

April 26, 2002

Personal contact keeps medicine fresh, the author says. It's a lesson he learned the hard way and relates in this 2001 Doctors' Writing Contest prize winner.

 

Young Doctor winner of our 2001 writing contest

It's the patient, stupid!

Jump to:Choose article section... Who's in control here? A mom should never bury a child Looking at William, seeing myself

By John A. Vaughn, MD
Family Practitioner/Columbus, OH

Medical training was intense. I dealt with people in a frighteningly intimate way; touching them, smelling them, not being able to get the taste of them out of my mouth for days. The intimacy left me tired and afraid, sometimes hating the work I did. And yet the close contacts also helped make me a doctor.

My training is behind me now. I'm better rested and better paid, but something is missing. My office days drift by on a stream of codes and precertification numbers. I miss the hectic pace of training, and the opportunity to learn from patients from all walks of life: patients like William (not his real name), a 36-year-old gay man with end-stage AIDS.

In 1996, when I was a third-year medical student, he was the first patient I admitted to the hospital. The details of that time are as vivid to me today as they were six years ago. As I reread the personal notes I took then, I realize the story they tell is as much about me as it is about William.

Who's in control here?

William had been admitted for MAI bacteremia. He couldn't breathe because of PCP, couldn't walk because of peripheral neuropathy, and couldn't eat because Kaposi's sarcoma lesions lined his esophagus. He was being eaten away piece by piece. It was cruel.

The first thing I noticed when I entered William's room was that he was fully clothed: a button-down shirt, khaki pants, even shoes and socks. This made it hard for me to view him as a patient. But if his clothes gave him the facade of control, his body told another story. His skin was like old china, yellowed and glassy with sweat. His dyed blond hair was matted down in a wide part, and a fine mist covered his precisely trimmed mustache. He looked like a character from a Faulkner novel—someone struggling to maintain an external dignity amid inevitable decay.

I did my best to convey mastery and self-assurance during the history and physical, but William seemed distinctly unimpressed. Then, after stalling as long as I could, I knew the time had come for the rectal exam. The thought of doing it made me dizzy with apprehension. Besides the inherent unpleasantness of the procedure, I'd never done one before, and the pictures in the textbooks were of little help. The whole thing seemed to me an absurd rite of passage—one in which I was being hazed but at someone else's expense.

I explained the mechanics of the exam to William, and then heard myself repeating the mantra doctors reflexively employ to describe everything from bandage removal to open heart surgery: "You're going to feel a little pressure." William looked at me and responded, "Frankly, I'm gay. I've had much bigger things up there than your finger."

A rookie, I was caught off guard. Was this William's way of masking his fear—an unconscious cry for empowerment? Calmed by my own psycho-jargon, I proceeded with the exam.

In my best nonpaternalistic manner, I instructed William to turn onto his left side. Without a word of protest, he followed my commands. As he dropped his pants, he said, "This must be the romantic way to do it." I was furious. Who the hell does he think he is? I thought to myself. I'm the doctor—almost. I'm in charge here.

Clearly, William wanted to make me feel as angry and embarrassed as he was, and he'd been successful. I finished the exam as quickly as I could and left the room. Next morning, I presented William on rounds, being sure to include the details of the hard-fought rectal exam. The attending physician sniggered at the completeness of my workup. After making a few crude jokes about the intimacy of our relationship, he decided that William should be my patient. The rest of the team laughed, and, in the spirit of locker room camaraderie, I laughed along with them.

A mom should never bury a child

But I was miserable, angry at myself for laughing at the attending's jokes and for being short with William. He acted the way he did, I was beginning to see, because he knew he was going to die in the company of strangers and there was nothing he could do about it. As for my own behavior, I attributed it to anxiety over trying to survive daily rounds. Understanding that didn't ease my guilt, though.

To make amends, I visited William on my first night of call. As I entered, the emptiness of his room struck me. Not a single get-well card was tacked to his bulletin board. No volunteer had stopped by to place a notice of a missed phone call on his bedside table. I'd never seen anyone so alone.

William began telling me about a project he was working on for his job—a technique for setting up audiovisual equipment for conventions. He wanted to finish this project, he kept repeating, so that he could "make a mark on the world, or at least a very small part of it" before he died. How sad it was, I condescendingly thought, that all he'd have to show for his life was something so irrelevant. My final tally sheet would be much stronger, I comforted myself.

William continued talking, and I appeared to be listening intently. It was a virtuoso performance—a beautifully choreographed ballet of head nods, thoughtful grimaces, sympathetic voice inflections, and reassuring touches. I was magnificent. But I didn't hear one word he said.

Until he mentioned his mom. He could have said "parents" or "mother," but he said "mom." It was as if I'd never heard the word spoken before—and it knocked the wind out of me. Suddenly, I was acutely aware of how much affection that little word carried—and it brought tears to my eyes. It also made me realize that William was someone's son, and I couldn't catch my breath. A mom should never have to bury her child.

I tried to regroup, asking William about his parents, this time listening to his answers. Unlike the family members of many AIDS victims, they were supportive. They knew he was gay and that he had AIDS. I asked if he wanted me to call them, but he emphatically refused. "Your time is running out," I insisted, with unforgivable lack of tact. "You won't get another chance." Still he refused.

A new attending came on service the next day, and I told him about my conversation with William. Unlike the previous attending, he actually spent some time talking with William and, amazingly, got his consent to notify his parents.

We called William's parents after rounds and told them how sick their son was. They lived nine hours away, they said, but would leave as soon as possible. Although William was technically a DNR, the attending instructed us to try to keep him alive until his parents arrived.

The next morning, a little after 11:30, a nurse called us to William's bedside. As his pupils dilated and his breathing became a rhythmic, mechanical gasp, it seemed as if he was on an invisible ventilator that was slowly wearing out. The nurse took his hand. Self-consciously, I grabbed his wrist, as if I were checking for a radial pulse. Despite the intimacy and gravity of the moment, I was doing my best to maintain a professional distance, afraid to show too much emotion in front of the team, still concerned about my own reactions. There we stood, complete strangers, giving witness to the end of William's life.

Looking at William, seeing myself

William's parents called around noon from somewhere in Pennsylvania. After we told them that he'd died, they said they'd arrive soon to bring his body home. I thought they would be more upset, but I got the feeling that they'd expected things to end this way for William. Of course, if he had asked someone to call them when he was first hospitalized they might have been able to say goodbye. But my guess was he hadn't wanted them to see him like that.

Looking back, I couldn't have been more wrong about William. He wasn't alone. He certainly wasn't irrelevant. When all was said and done, he wasn't very different from me. He'd made his mark on the world, and now I'm trying to make mine. That mark may not be as grand as I envisioned six years ago, but as my experience with William taught me, one need only touch a small part of the world to make a difference.

A medical school professor once told me that no matter how much the economics of medicine may change, it always comes down to the doctor and the patient in the room together, and nothing and no one can take that away.

I remind myself of his words every day, only now discovering their true meaning. They are the life preserver that keeps me afloat.

 

John Vaughn. It's the patient, stupid!. Medical Economics 2002;8:77.