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September 1, 1999

Lessons Outside the Lecture Hall

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JAMA. 1999;282(9):820-821. doi:10.1001/jama.282.9.820-JMS0901-4-1

It seems funny to me now that I was so surprised by his death. Four months later, I seem to be able to regard the events of that week with a little more objectivity, or perhaps a little less denial. I had known William for slightly more than 2 years. In my Student Continuity Practice he came to represent all of the joys and sorrows one can expect to encounter in primary care.

We met on a bright autumn day during my first year in medical school. My preceptor, Dr P, had given me only brief introductory remarks about my patient before William entered the room. I knew that he was infected with the human immunodeficiency virus (HIV), and I knew that he had been through some periods of ill health, but I don't recall having learned much more of his story. In person he was slight of build. Despite a sense of fragility, his spirit was vigorous. William embodied the seemingly contradictory qualities of optimism and realism that are necessary to live with HIV. Still enrolled as a graduate student, he had learned to work on his thesis when his body allowed it and to rest when his body demanded it.

Over that first year, he graciously tolerated my fumbling attempts to take a history and to perform parts of the physical examination. He willingly opened his mouth to show me his thrush. Later, he volunteered to serve as my subject during an assignment to interview a patient with a chronic disease. So that I might better understand what happens after a physician writes a prescription, William typed up a list of the 64 pills he took on a daily basis along with the elaborate dosing schedule.

In addition to taking an enormous number of medications, William came into the university infirmary every day to receive intravenous (IV) antiviral medications through a central catheter. Although constrained by this regimen, he never complained or refused to speak with me when I dropped by, almost weekly, to learn more about his experiences. I remember the day when he described his frustrating attempts to navigate several social service bureaucracies so that he could get some dental work done. As he told me about spending hours of each day on the phone, getting transferred from person to person, he was forced to interrupt our 45-minute conversation at least 5 times to rush to the restroom, dragging his IV pole behind him, on account of the diarrhea that he lived with regularly. Each time he returned with little more than a sigh or a roll of the eyes by way of complaint, continuing his story where he had left off.

Over the 2 years I knew William, he began to divide his time between two residences: his apartment in town and the infirmary at the university. Eventually, his parents, who were both retired, moved into town to take up residence in an apartment in the same building where he lived—close enough to be helpful and still allow him to retain a semblance of independence. This living situation was just one of the many contradictions and conflicts that accompanied his disease. On one hand, he resented being nearly 40 years old and still reliant on his parents for help; on the other hand, their presence provided a degree of security. It was not uncommon for me to stop by his room at the infirmary to find him dozing in bed, while his parents sat arm-in-arm on the couch watching television. Suddenly, the hospital room became a living room. I wondered on those nights how many homes would be so fortunate as to know that kind of love. On more than one occasion, I found myself faced with the contradictory thought, "How lucky he is." Not lucky to be ill, but lucky to be surrounded by a sense of unconditional love.

Last autumn, the third since we first met, he was at the infirmary more frequently than he was at home. In September, everyone at the infirmary seemed to breathe a sigh of relief when he was able to go home for the weekend of his 40th birthday party. Friends and family from all over the country arrived to celebrate the occasion. I heard that William was in his glory that weekend. Unfortunately, the glory was short-lived. Within days after the birthday party, he was forced to leave his apartment again. This time he had begun to cough up large amounts of blood. The infirmary wasn't going to be adequate this time: he would be moved to the university hospital.

Dr P had already made a difficult decision by the time I was able to see William in the hospital. In his opinion, this new development was far worse than anything previous. As he looked at William's pale and wasted body, Dr P didn't believe William's observation that "It just doesn't feel like I'm ready to go." Dr P advised William's parents to call the rest of the family lest they miss their opportunity to say goodbye. The family all rushed to his bedside, but William was right; it wasn't yet time. In several weeks he was strong enough to return to the infirmary, the cause of his bleeding still unexplained. Somehow, he had managed to rally. Intellectually, I understood that this most recent hospitalization changed everything that had gone before. But hadn't he managed to surprise us time and time again?

It was a Tuesday, my clinic day, when he arrived back at the infirmary from the hospital. I decided that I would go upstairs and spend some time with him before I headed home for the day. Sitting up in bed, he looked tired but not as bad as I had feared. William's mother was visiting while he was attempting to eat some dinner, so I sat for a while to chat. No more than a few minutes had passed when William uttered a startled sound and I looked over to see him, looking terrified, with a bloodied cup in his hand. I grabbed a pair of gloves and a warm washcloth. This time it looked like the blood was coming from a sore on his tongue, and with a little pressure I was able to stop the bleeding. I breathed a sigh of relief, grateful that things weren't as bad as they had first appeared. I said good night and told William that I would see him next week. I really believed that I would.

But, if I really believed that I would, why couldn't I shake the sickening feeling in the pit of my stomach? If I really believed that I would, why was I so obsessed with getting back to the infirmary to see him again? It seems so clear now, yet I was truly unprepared for the news of his death when Dr P paged me on Friday morning.

Dr P explained that he had received a phone call from the nurses' station in the infirmary at noon on Thursday. William was requesting that he come up as soon as possible. When Dr P arrived in the room, William calmly stated that he felt like the time had arrived for him to go. He wanted to know if that would be okay. William then looked at his mother and asked her permission to die. I suspect that granting this permission was the hardest thing this mother had ever done. Soon after, a morphine drip was begun and, as Dr P told me, a most amazing change took place in William. William had always denied that he was in pain; in fact, he rarely complained of anything. Yet when the morphine drip began, a brightness overtook William's face. Dr P said that it was like watching years of accumulated pain melt away. William spent several hours sharing the company of his family and a few close friends, with whom I felt privileged to be included. People held hands, hugged, prayed, laughed, and cried. Eventually, William felt the need for sleep, so he curled into a fetal position and slept. The friends stayed in his room sharing stories about his life while a brilliant sun set over the gothic buildings outside the infirmary's windows. As the light of the beautiful autumn day faded, William's breathing slowed. At 10 that evening, it ceased.

I attended a memorial service held in William's memory about a month after his death. William had planned this memorial himself as a celebration of his life: he alone had chosen the readings and the music. The service was held in an old Unitarian church on the university campus. In-between the music and the readings, friends had been invited to speak about their relationships with William. A woman with whom he had been friends since second grade had flown in to tell about her lifelong friendship with William. His college roommate shared stories of William the budding actor and intellectual. William, an actor? Another man shared a story about William's struggle as a pastor to a congregation. William, a pastor? William had found himself at the center of a bitter debate about whether homosexuals should be allowed to function as ordained ministers. As William struggled to find the meaning of his role in this debate, he had continued to minister to his congregation until the time that his illness forced him to leave. Many from that congregation sang in the choir at his memorial service.

I discovered that day that there was a lot I didn't know about William. As each friend shared his or her story, I found myself smiling through my tears. I had always thought William to be remarkable, but what I didn't realize was that I had judged him knowing only the smallest sliver of his life. How arrogant it was for me to think that because I had shared intimate knowledge of his illness, I knew the whole man. As a physician one is privileged to gain a certain intimacy with a patient. What I learned that afternoon is that our patients always are so much more than just the person we find sitting across from us in our examination rooms. They are each the sum of a life's worth of loves and struggles. In caring for each patient, our task demands that we respect the limits our patients place on revealing their lives to us, while never forgetting that often we get only the briefest glimpse of those lives. It is by recognizing that we tend to the person who exists both inside and outside of our encounters with them that we provide our best care.

I think of William often. I find myself missing him when I arrive at my continuity site. It is then that I think about who will be on the schedule that day, and I remember that his name will not be among those on the list. I hesitate to invoke the cliché that our patients are our teachers, but, I'm left with no more appropriate description of what William's relationship was to me. And he, like all of my great teachers, has left me with knowledge that I will carry with me for my entire life.