If you look at old medical texts, you see a kind of poetry in the naming of things. Some names are nearly onomatopoeic: The rumbling your stomach and intestines makes is called borborygmus. Some names sound like characters in an action movie: The buccinator is the muscle that allows you to pull back the angle of the mouth and flatten the cheek area. Other names are evidence that anatomists have imaginations, too: I remember the first time I dissected down to the bony indentation deep in the head that holds the pituitary gland, a part called the sella tursica, the Turkish saddle.
But human beings are more than their biology, and however beautiful and fascinating the language of medicine can be, that same language can be alienating and confusing to patients if clinicians do not pay attention to other forms of language, other ways of speaking about the body. This is especially true at the end of life, when it is crucial that we understand what matters to a patient and family.
I once had a patient who was eight years old, and who was dying from complications related to a bone-marrow transplant. His father, who was Muslim, was uncertain about decisions he had to make such as whether or not to do cardiopulmonary resuscitation when the child’s heart stopped. From within his story, he wanted to be faithful to his son and faithful to God. I had no idea how to help him find his way. When I walked into the room, I heard music playing, and so I began our conversation by saying, “What beautiful music.”
He answered, “It’s not music.”
“What is it?”
“What are they chanting?”
“What part of the Koran are they chanting now?”
He listened for a while, and then he said, “It is the part that says that in life we want many things. Sometimes God says yes. Sometimes God says no. But whether God says yes or no, praise be to God.”
Beginning with that part of his story, I asked him to tell me more, from inside his story, about medicine, God, fatherhood, and the dignity of caring for each other. By the end of the conversation, he had come to clarity about what to do, again, from the inside of his story. Biology could not help him decide, but his story did.
To say what matters is to make a statement of value, and value is not a biological concept. When we talk about what we value, we use the language of stories, faith, hope, fear, and mystery. I have come to think of the practice of medicine as being closer in spirit to the humanities than to the pure sciences. If it fails to pay attention to its humanistic aspect—the aspect that is most fully expressed through storytelling—medicine has the potential to do great harm.
William Osler—one of the early proponents of the application of scientific investigation to medical exploration—loved literature. He pitied physicians who didn’t read literature; he thought they had to learn to read stories, to listen to the inside world of others, which is what stories do. As a physician, when you’re welcomed into the life of another person as a guest, to wield power responsibly, you need a way to grasp that world.
The inside of a person’s world is revealed through stories. And to tell or listen to stories well, we must care about the language that is being used.
Barfield is associate professor of pediatrics and Christian philosophy in the schools of Medicine, Divinity, and Nursing. He is a pediatric oncologist and palliative care physician, and he directs the medical humanities program in The Trent Center for Bioethics, Humanities, and History of Medicine.