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Sims Lecturer John Lantos: Stories as "Ethical Work"

By Steve Hinnefeld

Stories have the power to captivate, to entertain, to motivate and to persuade. There's something about telling and listening to stories that seems basic to being human.

In the Poynter Center's 10th annual Matthew Vandivier Sims Memorial Lecture, pediatrician and professor John Lantos explored another aspect of stories: their ability to connect our personal narratives with the larger world and to broaden our understanding of moral inquiry.

The lecture series was established to honor Matthew Vandivier Sims, who died in infancy. It is a collaboration between the Matthew Vandivier Sims Memorial Lecture Fund, provided by Damon and Suzette Sims, and the Poynter Center.

John Lantos and Richard Miller

John Lantos (left) and Richard Miller

"Scientists don't like stories; they like data. Neither do philosophers. They like principles, or what passes in their world as proofs," said Lantos, director of the Bioethics Center at Children's Mercy Hospital in Kansas City. "Yet we tell our stories, over and over again. Especially the tragic ones. Sometimes, the repetitive telling solidifies the story into a tale with a moral, a set piece in our internal ethical world. Other times, the meaning of our stories changes with the retelling or rereading."

Lantos cited the philosopher Arnold Davidson, who argues that ethics involves not just codes of behavior but the process of constituting ourselves as moral subjects of our own actions. Stories, Lantos added, "are the self-forming activity -- the ethical work that one performs on oneself in order to transform oneself into an ethical subject. In that sense, they are no less relevant -- and no more narcissistic -- than any other aspect of moral reflection."

He framed his lecture around five stories involving ethical dilemmas and characterized by learning, changing perspectives, and personal transformation.

Passing out in the NICU

Lantos almost fainted the first time he visited a neonatal intensive care unit. A medical student, he was overwhelmed by the tiny babies "inside shiny translucent plastic bubbles," the officious nurses, the machines that were "glowing, beeping, and mechanically whooshing." He grew weak and sat out the tour in a waiting room, sitting with his head between his knees.

After he became proficient pediatrician, Lantos would tell the story with pride at having overcome his first response to the NICU. But later, he realized he had been telling the wrong story. "The overwhelming rush of emotions that had made me weak in the knees was not inadequacy," he said. "It was, instead, a sort of sensitivity that was valuable and fragile, something to be treasured and nurtured, not denied or obliterated."

A medical error

As a young resident, Lantos was covering an overnight shift in the NICU after working all day in a genetics clinic. Exhausted but confident, he was in charge of 40 babies, some of them critically ill. During the night one of the more stable babies developed an extremely rapid heart-beat. The sign-out slip left by the day physician said, "Try ice. Try Verapamil." When an ice pack didn't help, Lantos tried Verapamil, a newly available drug. "And his heart stopped," he said. The baby died.

Painful as it was, Lantos told the story first as a tale of guilt and incompetence and later as a "self-improving parable" about the risks of exhausted doctors and untried treatments. But as he grew older and had children, he realized the central characters of the story were the baby and his parents. "I had made the story one about me," he said. "But I was, at most, a minor character in the tragedy."

Anna and Mitch

Lantos' step-daughter was pregnant with twins and began labor at 21 weeks, before the babies were viable. Should doctors induce delivery, letting the babies die? Delay labor medically, putting Anna, the mother, at risk? Against the advice of some doctors and friends, they chose the latter. "Everybody else saw long odds and thought, 'That's not worth the risk,'" Lantos said. "Anna and Mitch saw the long odds and thought, 'Someone will be lucky, why not us?' They were determined to hope."

Anna gave birth to two boys at 23 weeks, and Sam lived less than a day, but Will beat the odds after a long family struggle. "He just had his fifth birthday," his grandfather said. "He has terrible retinopathy and is nearly blind. Other than that, he did great. He is happy, delightful, and mischievous."

Violette

Annie Janvier and Keith Barrington, neonatologists in Montreal, had a baby, Violette, who was born at 24 weeks and was very sick. They were resigned that she would die when they saw her suck on a pacifier. Although it was probably mere brainstem reflex, "when they saw tiny Violette sucking on her paci, they couldn't bring themselves to authorize withdrawal of life-support," Lantos said. Janvier and Barrington speak and write about their experience. Their message: Emotion saved Violette's life.

"Some think that their unique combination of medical expertise and personal experiences gives them special and unique insights, special wisdom," Lantos said. "Others suggest that their personal experiences have distorted their reasoning, that they have lost their detachment."

A personal matter

In A Personal Matter, a semi-autographical novel by Japanese author Kenzaburo Oe, a feckless 24-year-old named Bird has to decide whether to authorize surgery for his newborn son. Without it, the boy will die. With it, he may survive but probably with brain damage. Bird tells a friend that his dilemma is "a personal matter," and he struggles alone and isolated, as if deep in a cave. But within the cave, he says, will be a side tunnel "that opens on a truth that concerns not just yourself but everyone."

"Stories at their best get us out of that cave," Lantos said. "They transform personal matters into matters that concern not just ourselves but everyone."

The lecture is available online at http://broadcast.iu.edu/lectures/sims11/index.html.

In addition to the public lecture, Lantos met with Hutton Honors College students and Wells Scholars for dinner and conversation about ethical issues in dealing with infants who have anomalies or are extremely ill.