Doctor examines ethics of life-and-death choices

By Marion Davis, Staff Writer

She was born in 1972, her back cut open by a spina bifida lesion. He calls her “Faith,” perhaps because when her parents brought her to him at the Johns Hopkins Child Neurology Program, and he told them what she’d need to survive, faith guided their actions.

After consulting with their minister, they took her home, to let God decide.

Dr. John M. Freeman thought, based on British research, that if left untreated, the girl would develop meningitis and die promptly. But three months later, Faith was back, her lesion closed, but sick with meningitis. He sent her home, convinced she couldn’t be saved.

But Faith lived. At four months, she returned, her meningitis gone, but her head swollen from hydrocephalus – water in the brain, a common problem with spina bifida patients.

Freeman knew how terribly hydrocephalus could end, but this time, the parents were with him. Clearly, they’d decided, God wanted Faith to live. They proceeded with full treatment. At a lecture Wednesday at Rhode Island Hospital, Freeman showed pictures of Faith at age 2, supported by back and leg braces, and as a lovely, smiling 6-year-old. A few years ago, he looked into her records and found she was in her 20s, but she’d also required more than 20 surgeries, many for bedsores, as well as repeated shunting for her hydrocephalus.

Did he do the right thing with Faith, he asked? Was it right to let her parents take her home like that, and then to work so aggressively to save her? What would Faith say?

He’s never had the courage to go ask her, but he did ask two other former patients, at a Christmas party in 1998, as he was preparing to write on ethics and spina bifida. By then, folic acid had been shown to prevent the birth defect, and ultrasounds could detect it in pregnant women, many of whom then chose to have abortions.

The patients were now in their 20s, college graduates with jobs, but wheelchair-bound and living with their parents, with no social life. When Freeman asked for their input, they said, “Tell them we’d wish we’d never been born.”

“I was dumbfounded,” Freeman said. He realized he’d been “arrogant,” he said, too sure that he knew best, too “paternalistic.” After much pondering, he’s now realized he doesn’t know the right answers. He’s been out of the Hopkins clinic since 1991, but if faced with another child like Faith today, he said, “I don’t actually know what I would tell the mother.”

Freeman spoke at Rhode Island Hospital as part of a special program in the memory of Matthew Siravo. Diagnosed with epilepsy when he was a year old, Matthew died at age 5 on Mother’s Day, 2003, after a particularly devastating seizure.

Since then, his parents, Richard and Debra Siravo, have created a foundation to raise funds for epilepsy research, education and camps and scholarships for epileptic children. They also created a lectureship at Brown Medical School; Freeman, a highly regarded pediatric neurologist credited with major insights, especially in childhood epilepsy, and an authority on the ethics and “humanism” of medicine, is the first to take that position.

The title of Freeman’s lecture was “Paternalism to Humility: A Thirty-Year Journey.” But while Freeman elicited knowing chuckles when he recalled the “doctor knows best” view of the 1950s, he also expressed strong concerns about more modern attitudes.

“I worry about the rise of patients’ rights and consumerism,” he said. The shift toward patient autonomy since the 1960s – the notion that patients and their families should decide, period – didn’t always result in the best outcomes, he noted. “I’m glad that patient autonomy is changing into a dialogue between physicians and the families.”

Freeman also expressed concern about the role of money in life-and-death decisions – both on an individual level, and in the big picture. He cited a highly controversial paper by then-Colorado Gov. Richard D. Lamm that warned that technological advances “are exceeding our ability to afford them,” and that the high cost of the most aggressive medical interventions came at the expense of more basic care for other patients, and various other social needs.

If, at one point, we do provide universal health care, Lamm wrote, rationing will be necessary; the question will be what should be rationed, and at what point in life.

Freeman said he doesn’t believe cost should be a factor in care decisions for individual patients, but Lamm’s arguments do give him pause, and he’s come to believe that there is a broader social responsibility that should inform the health care system. The question is what society wants, he said, and that’s not clear.

After half a century in medicine, Freeman said he’s come to value paternalism again, coupled with compassion, and to favor some limits on patient autonomy. But his paternalism has become “far less certain,” he added. More and more, he doubts that he knows what’s right.

Still, Freeman wants doctors to keep seeking the answers. People have asked him whether other pediatric neurologists ask the same ethical questions he does, he said, and he replies, “I sure hope so.” In reality, however, “I don’t see my colleagues talking about these issues.”

Published 10/29/2005
Issue 20-29