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An ethical postmortem on the Schiavo case
Townsend Center gathering looks at dying, death, and the meaning of 'pro-life'

| 04 May 2005

States' rights, states of consciousness, and the state of American politics all helped animate a lively Townsend Center discussion last week on "The Dying and Death of Terri Schiavo."


Father Richard Sparks, of Berkeley's Newman Hall, said at last week's panel discussion on the Schiavo case that what appeared to be a unified Catholic stance against letting Terri Schiavo die was in fact "a new, right-wing position ... trying to win the day" within the church. (Deborah Stalford photo)
And despite the considerable multidisciplinary expertise on display - ranging from medical bioethics and the law to Catholic theology - the talk at times turned deeply personal. Though unusual for a public gathering of Berkeley academics, the tone befit what a flyer called "the personal and family tragedy" that held the nation rapt for weeks before being upstaged by a grander spectacle, the dying and death of Pope John Paul II.

Shades of gray, largely absent from March's highly charged debates in the media and on the floors of the U.S. House and Senate, dominated the two-hour discussion.

Guy Micco, a clinical professor in the UC Berkeley-UCSF Joint Medical Program, has cared for patients in a vegetative state, taught classes on death, and served as the chair of Alta Bates Hospital's ethics committee. Until the Schiavo controversy, he said, he'd believed the bioethical questions raised by her case had been "pretty well settled" in the 1970s and '80s, and he at first viewed the issue through the eyes of a Western medical practitioner: "This isn't the story of judging another's quality of life. She's not disabled. She doesn't have a poor quality of life - she has no quality of life, according to the medical standards I was going by. She's gone. She's not there."

Later, however, he reflected on the Buddhist notion that there are 89 states of consciousness, and on the West's "very poor understanding about what consciousness is." In that light, he added, what most fascinated him about the Schiavo drama was "the intensity of the arguments" from advocates and opponents of keeping Schiavo alive with feeding tubes.

Marjorie Shultz, a Boalt professor of law, took issue with Micco's assertion of a clear consensus on bioethical questions and, more broadly, with what she termed "inappropriate levels of certainty" by designated experts.

"To me, the import of Schiavo has to do with the difference between expert opinion about abstracted rules on the one hand, and a more lay, intuitive, experiential, feeling-oriented sense of what is going on in relation to a case like hers," said Shultz, observing that "the public at large did not much participate" in the conversations that supposedly "settled" key bioethical questions.

Her own son, she said, was in a vegetative state for three months. "I'll tell you we didn't like talking about him as a vegetable," she declared, "and it told us something about the attitudes of the professionals that they used that kind of terminology." Although her son was able to throw a tennis ball into his brother's glove at several different positions "with uncanny accuracy," she recounted, doctors insisted the action was "merely reflexive."

"We don't know what these people feel. What we know is that they aren't able to demonstrate to us what's going on inside," Shultz said.

Anthropology Professor Nancy Scheper-Hughes discussed her ethnographic research in Ireland, where many nearing the end of life put a premium on what they called "a good death," eschewing doctors for priests. Before doctors became a fixture in rural villages, she said, the right to declare a person dead belonged to the family. "Anthropologists all know that the definition of death is. a cultural judgment."

But she also spoke of her "very, very Catholic" mother, and of how she died hooked up to feeding tubes, "preserved against her and my wishes" by medical professionals under the sway of the church.

"I think we are in the pickle we're in because of experts," she said, echoing Shultz. The attitude of her Irish subjects toward death, she said, holds a lesson for the rest of us: "It's not the idea of keeping people alive; it's learning how to be with people when they die that we've lost."

But Father Richard Sparks, the pastor of Newman Hall in Berkeley, bristled at the suggestion that the Catholic Church views matters of life and death as narrowly as Republican leaders like Rep. Tom DeLay and Sen. Bill Frist, who were instrumental in making the fight to keep Schiavo alive a rallying point for conservative Christians.

Sparks, who has a doctorate in ethics, said it disturbed him that "only one side" within the church spoke out on Schiavo, while "the other side was mute" - a dynamic he said closely paralleled U.S. political developments.

"There was a political gain for DeLay and the right-wing Republicans to say, 'Let's champion Terri Schiavo,'" he said. "There was no political gain for Democrats to say, 'Let's get her dead. She should be dead. Won't she be happy when she's dead?'"

Noting that "Mother Teresa, the saint, did not force-feed people in hospices," he explained that Catholics traditionally have tried to find a balance between the burdens and benefits of continuing life support for someone in Schiavo's condition. Schiavo's husband, he said, believed the burdens were greater, while her parents held the opposite view.

The church, he suggested, did not tilt as strongly toward the parents as it might have seemed from the silence of those who felt Schiavo should be permitted to die. "What it looked like was that this absolutist, got-to-keep-everybody-alive position - like we tend to be on abortion - got to be what the Catholic position is," he said. "I'd argue that's a new, right-wing position that's trying to win the day in a church that has traditionally not said that."

Pamela Faden, a community health educator and activist for the disabled, said she'd like to reclaim the term "right to life" from "right-wing forces," and offered her own definition: "that we fully fund social services that allow people to make choices in life - choices that probably Terri Schiavo could not and did not make for herself."

And Kathleen Frydl, an assistant professor of history at Berkeley, pointed to "ideological hypocrisy on both sides" of the political debate, but said "what turned Americans off" to federal intervention in the Schiavo case were the right's "ostentatious displays of moral righteousness."