Paris and Pediatrics
Note: We have used initials rather than names for the sake of privacy.
We sat in their backyard, drinking a French Cabernet Sauvignon purchased at the Utah State Liquor Store, as I told them how to sneak six bottles of their favorite wines back into the States if they wanted to risk it. I allowed as how we had given up the practice, bringing back only a bottle or two in our carry-on luggage for sentimental reasons. Drinking a good French wine in Utah just doesn't do it.
Counseling someone about what to do in Paris is not unlike a pediatric office visit: you must first ascertain what their expectations are either for their trip or about their child's problem. Once you have gleaned that you can tailor your comments specifically to their needs. In both cases you avoid foisting your preconceptions on them without talking their mindset into account.
As this parallel came to mind I recalled my previous medical relations with my friends, an experience which shaped both them and me……
General pediatricians generally wallow daily in the self-limited illnesses of childhood, the joys of well child care, and the occasional acute crisis. Our patients, and not many of them, die of sudden infant death syndrome in their cribs, in the emergency room following catastrophic trauma, or in the hospital intensive care unit or ward of a terminal illness. Even so death remains at a distance. When it does not there is potential for unexpected wisdom.
Seven years ago H was brought into my office by his parents for a four month well child exam. His parents, whom I knew socially, had moved with their first son to Vermont and had returned to SLC with their new son.
“He floats when we bathe him,” his parents proudly commented, as if touting his uniqueness. I laughed and felt his abdomen and noticed an unusual firmness, a mass. An abdominal CT, performed the next day, confirmed a large retroperitoneal mass which turned out to be a neuroblastoma. The journey began.
Over the ensuing five and one half years H underwent two bone marrow transplants. After each, his oncologist felt that he had done well and might be cured, but three months after the second one he suddenly developed pain and metastases. There was nothing further to do for his disease. I held a meeting in my office with his parents, his godmother (a nurse who had helped her own mother die), a hospice nurse, and a home care nurse who had been assisting with protocols at home. The consensus, lead by H’s parents, was that it would be important to help him die in comfort and without pain. The whole family had been deeply involved with the clergy at an Episcopal church a block from my office. So it was.
Every weekend from then on I brought Slurpees from Seven-Eleven to both H and his older brother. On Saturday mornings they were both ensconced in television, mainly Pokemon, a childhood fascination neither I nor their parents understood. They were primarily concerned that the boys thanked me for my efforts. When they did not, because of their absorption with television, I lied: “Yeah they did,” I assured them.
Two months later, on a Saturday morning, I got a call at home from H’s father saying simply, “I think H is checking out.”
A few minutes later I arrived at the house finding an emaciated H, lying on the couch semi-comatose. His family and his godmother were there and some medical supplies were on the dining room table. I asked what they had been giving him and called the hematologist on call and determined how much methadone he might need.
I spent most of the weekend at H’s house, returning home only to sleep and eat since he lived five block away. By Sunday morning his extremities had become cool and mottled and he was making a sighing sound, as if moaning. He had been moved to his parents’ bed and had lain between them throughout the night. Nobody had had much sleep. H’s pupils were sluggish.
His parents were worried about his sighing; it seemed to them as if he was in pain. I explained that all signs indicated that his body was shutting down, described the simple physiology, and said that the sighing was an expiratory sound made by air passing through immobile vocal chords. H held on for another eight hours and finally died early Sunday evening. Recalling the scene a few months ago when my friend R’s body had been taken from his home in a body bag at ten o’clock the night of his death, the family’s keening and wailing reminiscent of the funeral scene from Zorba the Greek, I had told H’s parents not to call the funeral home until they were ready to have him taken. They bathed and dressed him for an hour and a half, called the funeral home, and he was gone.
The funeral was held four days later at the Episcopal Church. His parents asked me to play Amazing Grace on the harmonica as his casket was carried from the church. He was buried in the city cemetery, two hundred yards from his home.
At the wake following the burial I was surprised by how many relatives and friends made a point of saying how grateful they were for what I had done. Having finally learned the import of accepting thanks gracefully I reflected on what I had done: I had been there most of the weekend, coordinated the administration of medication, explained what was happening, and had been a witness to H’s dying. Never had I been privileged to attend a good and painless death at home surrounded by love. I felt like I had been given a gift by this experience but was not sure what it was.
A year later, at a small memorial service for H I discovered the answer. H’s mom asked if I would say a few words at the service. I said that I would and over the next week refined my thoughts:
“We have all had time to think about H’s death and how it has affected us a year later. I have told the story of that weekend many times and only recently come to understand its meaning.
In America we tend to think of death as an option, to paraphrase the words of health economist, Uwe Reinhardt. We don’t talk about it until it affects us directly. Frances Gunther writing in Death Be Not Proud about the death of her son lucidly observes that, “Nothing, not even the birth of one’s own child, brings one so close to life as his death.”
Through my thirty years as a pediatrician I have had children die, attended their funerals, and I even spoken at two of them. Both times I was asked to try to make sense of the inexplicable because death of a child turns the universe inside out. It makes no rational sense.
Until that weekend a year ago I had never participated directly in helping someone leave. Even though I was not there for H’s final moments, his life and death have changed me. Being there as I was with L, A, Q, R and A as well as various others who helped keep the watch over H, was a life-changing experience. It permitted me to understand my role as a pediatrician, perhaps for the first time, as one who is there simply to care, to be present, and occasionally to explain, little of which I learned in medical school. H’s gift to me has been one of acceptance. After all these years I learned what it means just to be Dr. Lou.
So now when I can catch a Seinfeld [H loved the show and would imitate Jerry with a vintage H snarl] rerun and serendipitously hear Jerry intone, “Hello Newman,” I think of H and his gift to me. Both the reruns and his gift will go on forever.
What I did that weekend a year ago was both necessary and very natural. Its focused simplicity and attendant quiet was the essence of compassionate care. Death, the ultimate leveler, had diffused the need of the ego for approbation. The end is clear and known; the process is all.
