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September 3, 2003


JAMA. 2003;290(9):1221-1222. doi:10.1001/jama.290.9.1221

He never was much for going out. Never dug the city. Always had a serious thing going with some Jersey-type girl that kept him otherwise occupied. Big into the gym. Big into his big Italian family. As kind and gentle as 21-year-olds come.

Par for the course of postadolescent health nuisances, he had his wisdom teeth yanked this past summer. Somehow, the holes wouldn't stop bleeding. Upon closer examination by his dentist, there appeared to be a mass in his gumline. In the emergency room, they suggested that he had Burkitt's—rare and aggressive. Without any framework for this information, he and his mother were whisked off to the big city, the undeniable sign post—the Cancer Center. And that was it. This is how his life evolved to include new characters, new words, new expectations. Visiting him forced me to navigate the awkwardness inherent in my role. Not only was I grappling with my brother's grief at the news—his best friend in the hospital with cancer—but I wore my medical student status like a neon sign, bright with the promise of information. Something more than family friend, I was expected to have the whats and whys closer at hand. He had been ushered into my territory against his will. Thankfully, his hospital room always had an attitude and a spirit of its own to reckon with. Among these Italian Americans from Brooklyn and the Bronx, there was no shortage of lunacy. From the deliveries of 24 chicken parm sandwiches to comments like "Don't worry about going back to school, you can major in looking good without the classes," the moments of gravity were few. But as time passed, they seemed to pile up.

His course was complicated by relapses, financial crises, and tried spirits. Room 1120 seemed to become my axial center, and I was one of many orbiting bodies. The plastic chair next to his bed knew his mother's form from many nights of forced intimacy. When I walked in, my heart choked at his pale, gaunt face, fuzzy head, and IVs. His mother prattled on to me in detail about his impending bone marrow transplant, and I was taken aback by how quickly anyone can learn the dialect of a hospital, how medicine is a knowledge born of a desperate need. Amidst this, it was impossible for any of us to consider his condition as permanent. It would be a matter of endurance, but soon, we'd all be ordering cheese fries at the diner, laughing about that week in the hospital when he didn't change his underwear. Each day, however, brought its new engagements in a series of tiny battles, the victory constantly around a corner. We couldn't—didn't—want to see further than the next step. It seemed the only way to avoid paralysis. We'll take it one joke at a time, we assumed.

Until James lost his sense of humor. Four walls and a small window could not contain all of the horrors born of this diagnosis, this sentence. He began to obsess over his escape. Waiting for counts to rise, he taped a small piece of paper filled with scribbled numbers to the wall. The X-Box Nintendo, the Charlie Brown Christmas tree in the corner, the photos of his bigger, livelier, tanner self with brothers and nephew, cousins and uncles, seemed to fade into the taupe of the walls. Pain fermented in this room. He could no longer contain it himself. It wasn't just the pain in his bones, nor was it the sores in his mouth. It was the pain that comes with using up hope.

His brother was a perfect 6/6 match, so we never had to resort to the "gang of goombas" his mother knew were lined up and ready to donate. But James was never fully brought into remission prior to the transplant, despite being bombarded by chemo and radiation. He asked me, "So, Kell, what happens if this doesn't work? I don't understand what's next. These doctors don't tell me anything good." Already then I saw my tendency toward sugar-coating, even in the fetal stages of my clinical experience. It doesn't arise so much from paternalism as from knowing the power of will and hope. I am a realist at heart, but in this context I could not see the glass as half empty. I believed the words as they ran from my lips: "There will always be another option."

The future had begun to shrink when my brother and I went to visit on Christmas Eve. James was splotchy-skinned and vacant-eyed, and only able to convey one sentiment—that he needed to go home. He retched and vomited. Get the badness out. He seemed inaccessible. And now I felt afraid. I wanted to be watching home videos on his laptop—especially the one where he dresses up in silvery spandex and a crop top to do a Euro dance club routine with his cousin. I wanted to be joking and laughing, the hospital setting incidental. I didn't know what to do with him like this. This seemed desperate to me—a quiet violence. Did he know then? Did he know inside himself that he had turned the corner?

I got the call on a Friday. James was sent home on hospice care. Until then I never truly knew what was meant by something that takes your breath away. The future that we were too myopic to recognize was here. Impossible. James didn't even want to see my brother. His body was changing. His disease was marking its territory inside and out. It was only a few days later that my brother told me, with trembling voice and pink-rimmed eyes. "It's not like they say. He didn't look peaceful. He looked like a dead James." I sat in the pew of the church and felt the reality of his absence. How can this be the end point? How can this be the next step? I watched tears roll from my parents' eyes, and I felt more than my own grief as I watched my brother bear the casket.

We visited his mother and family this past weekend; the sun was finally warm, and I thought of how James was missing the change. On the table was a pile of loosely organized papers, the new diary of James' illness: a mountain of medical bills, and among them, his lingering school loans. What becomes of our cell phones, bank accounts, e-mail addresses, our status as a son, uncle, brother? I told his mother that I imagine she must feel that someone has thrown her a weight greater than the weight of the entire universe. She is falling with no idea if she will ever hit the ground. I told her that I think she will learn how to fly.

2004 John Conley Ethics Essay Contest for Medical Students

You are a third-year medical student on the last day of a clinical rotation. You have seen a total of 2 lumbar punctures. Just before you enter a patient's room and leaving you no time to respond, your attending physician says, "I'm going to introduce you as ‘doctor.' It makes it easier for the patient and you need to do a spinal tap before you finish your rotation." As you enter the room, the attending physician tells the patient, "This is Dr , who will be doing your lumbar puncture." The attending physician and the patient both look at you expectantly. What do you do? What are the ethical and professional considerations that would guide your response?

Entries must be postmarked by February 1, 2004, and sent to Conley Essay Contest, c/o Juliana Walker, 515 N State St, Chicago, IL 60610. The author(s) of the best essay(s) will be awarded $5000 or a portion thereof. More information about the contest is available online at http://www.msjama.org.