Marie F. Johnson, M.D.
Assistant Professor of Medicine
Division of Geriatrics
University of Colorado Health Sciences Center
4200 E. 9th Ave, Box B179
Denver, CO 80262
Ph: (303) 315-0533
My nephew died at home this morning.
Sam's mother sat on a soft taupe sofa, holding him in her arms. May's sun streamed through the windows while Sam's father leafed through the mail in a worn armchair nearby. The schoolyard down the street was alive with children's games, including those of Sam's older brother. A brain tumor, now coma, had been blended into the ordinary happenings of daily life for a long time. And then Sam took his final breath.
Sam spent most of his five years living a healthy, vibrant life at home with his parents and brother. He dressed as an ice cream cone last Halloween, and as Snow White's Doc the year before. He loved his dollhouse, the color yellow, his best friend Lilly, and salty pretzels. Even so, Sam also spent many days in hospitals. He had an astrocytoma, diagnosed when he was four months old. Throughout his life, the juxtaposition of apparent health with periods of critical illness obscured the hazy boundary of futility and appropriate medical care. Sam would undergo brain surgery one day and be home swinging in the back yard the next. At two years old he complained of nausea one evening after dinner. Several hours later he became lethargic. His parents rushed him to the hospital, where he seized and postured on arrival-and his parents were told that the end was near. The following day, he awoke asking for his mother. He was discharged from the ICU three days later and went home to bake a cake covered with colored sprinkles in his Easy Bake Oven, his friend Lilly at his side. Despite his dire prognosis, Sam grew up and attended preschool, grew into a size five banana yellow fleece jacket, and traveled from his home in Massachusetts to the beaches of both Maine and Oregon.
Sitting in my office I was admiring a photograph of Sam dancing on the Oregon Coast, Tillamook Head in the background. My brother just telephoned with the news of Sam's death-four and half years later than I expected it.
When Sam was diagnosed, I immediately framed the issues of his illness in terms of probabilities-and asked myself whether treatment of his illness was futile. Most physicians are taught to frame illness in probabilities: probability of survival, probability of response to treatment, probability of complications from treatment. We base such probabilities on the medical literature, and on our own experience. As I framed Sam's illness in my mind, I struggled with my role as the doctor in the family. I was a medical resident at the time. The tenets of evidence-based medicine and the realities of good and bad outcomes filled my days. While I decided to withhold advice and opinion about Sam's care, I repeatedly asked questions about goals and potential outcomes. I offered to explain issues that might be confusing to Sam's parents-serve as an interpreter of sorts. I offered to help his parents seek other medical opinions through my network of physician friends and colleagues. Yet, my concerns about futility were probably evident. I remember sitting slouched in a chair wearing sweaty scrubs, my refrigerator empty and eyes burning after a night on call, listening to Sam's father describe that first MRI four and half years ago: "A very large tumor, near the brainstem (is that right?), not operable…"
Early in Sam's illness, another physician in the family advised Sam's parents to not pursue treatment. Years later, when Sam was attending preschool, his parents recalled the comment bitterly. The comment seemed glib in retrospect, although I suspect it was born from thoughtful consideration-thoughtful consideration of outcome probabilities. I felt thankful that I had withheld such thoughts-unaware that my beliefs may have been apparent even though I didn't give them full voice. I continued to believe that my medical education gave me some deeper understanding of the complex issues surrounding Sam's illness and treatment. I knew the probable and ultimate outcome of his illness. I continued to see myself as a potential advisor, with the ability to guide Sam's family through the maze of the health care system-using my medical training as their light. The physician in me accompanied me everywhere and dominated my conversations with Sam's parents. As Sam's illness unfolded, as treatments succeeded and then failed, I channeled new data into my physician construct, and formed new probabilities about Sam's future.
But Sam's life taught me a lesson that had otherwise eluded me. In the final analysis, Sam defied all expectations. He defied all probabilities, living longer and healthier than expected. He brought joy, not sadness, to the people he met. When Sam sponsored a hospital blood drive, one hundred of his personal friends came to donate. Not realizing how remarkable it was, he bounced around from donor to donor as though it was a birthday party. He loved a celebration. When Sam was two years old, he and his brother disrobed, climbed in the bathtub together with party hats and honkers, and celebrated the removal of his central line-his first real bath. On the day before his last operation, Sam was the master of ceremonies and stood on a chair telling jokes while friends and family laughed, gathered around his kitchen table. The ultimate outcome of Sam's illness became increasingly irrelevant. The possible outcomes of the future gave way to Sam's life-happily lived.
Sam taught me that probabilities play no role in family illnesses. While probabilities guide diagnosis and treatment choices for patients, they distance us from the individual. Behaviors and outcomes of populations are not easily applied to individuals though most of us become accustomed to doing so in medical practice. After all, for the individual the outcome either happens or it doesn't-whether it was probable doesn't really matter. In our medical practice, however, probabilities provide necessary guidance to counsel patients, to help patients understand the spectrum of possibilities and make difficult choices. The probabilities derived from populations are the foundation of our medical practice. Thus in our professional lives, we learn to live with our uncertainties, the fact that we will make mistakes in our estimations, that patients will defy expectations just as Sam did.
Applying probabilities to the lives of our loved ones, though, is different. There are risks. We must live with our mistakes in estimation for the duration of our relationships, usually the rest of our lives. Probabilities objectify. They rely on assumptions. Our families rarely need objectification and assumptions. They need the love of family and friends-perhaps no more, no less. The last thing Sam or his parents needed was another doctor. Their lives were filled with expert medical opinion: pediatricians, neurologists, neuro-oncologists, and neurosurgeons. Sam received extraordinarily good medical care-accompanied by much kindness. He and his parents became sophisticated negotiators of the medical system and knew more about pediatric brain tumors than I will ever know. Sam and his family needed their aunt, their sister, their sister-in-law. They didn't need, or want, a doctor in the family. Medicine is a humbling profession. The intensity of effort required to become a physician weaves our professional selves deeply into the fabric of our lives and our perceptions of the world. To acknowledge a limited role for our professional abilities in our personal lives is humbling. In the end though, it may free us to be husband, mother, daughter, grandson, nephew, sister-or aunt. The recognition freed me from concerns about decisions that were never mine to make. Had I been the decision-maker, I fear I would have made the wrong decision and denied Sam the life he so richly enjoyed.
In memory of Samuel Robertson Johnson February 14, 1993 to May 27, 1998.