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Do Not Go Gentle?

August 8, 2005

Harrison Scott Key
Michael DeMocker

As March turned into April this year, something wonderful happened in New Orleans. We had a spring. Days were greener and bluer and pinker than in years past, and it wasn't just from the beads in the trees. The grass and sky and azaleas were just being themselves. It's a season where life is the issue, and freedom.

tulsum05_death_1Spring is when we celebrate Easter and Passover, those two events when a people are redeemed, when a people are freed, when life gets a second chance. And in New Orleans, we felt it. The days were warm, the nights cool, the sun up. And so it made little sense that all we could talk about was death.

For almost a month, we watched two people die. One, Pope John Paul II, was an icon of the 20th century, a man who played his part in polarizing the West and freeing the East. The other was Terri Schiavo, from Pinellas Park, Fla. She was a wife, a daughter, and a sister, but by the end of her life, she, too, was an icon. She had been made a symbol right before our eyes, with a few photos and video clips our only text.

America surrounded this new icon from opposing sides. It -- no longer she but it, the icon -- became a singularity, a place in space and time on which our fears, anxieties and deeply held beliefs could be focused. Death, apparently, pushes a few buttons....Take a stroll across the footbridge from the Tulane University Hospital and Clinic, and you'll run right into Thomas Gonsoulin's office on the second floor of the School of Medicine. With its wood paneling and framed Ansel Adams, his office sits in welcome relief to the nearby hospital, in all its antiseptic white and silver and fluorescent.

Gonsoulin, associate professor of otolaryngology and chair of the Tulane Hospital Ethics Committee, says the Schiavo case forces us to face three issues. With a medical degree from Tulane and a master's degree in pastoral studies from Loyola University, Gonsoulin knows something of bioethics.

First, he says, "It's a technological issue. It's a direct result of the technological explosion." We are reluctant to let someone like Terri Schiavo die, he says, because our culture puts so much faith in science that we find it difficult to admit its limitations.

Related to this issue, Gonsoulin argues, is our emotional connection to the removal of a feeding tube. "It's become so commonplace that people now think of it as ordinary nutrition, which it's really not. It's still medical intervention. Even physicians forget that. It's not as fancy as a ventilator, or renal dialysis, but it's still an intervention."

Still, most of us don't spend our days thinking about lungs and kidneys. We all think about food. From Christmas to Mardi Gras to Passover, food is central to our celebrations as a people, and its removal is understandably emotional.

Second, Gonsoulin says we have to face the issue of personhood. "A body can keep going with the brain stem intact but with no other kind of brain function. But, is that a person?" He admits that different worldviews answer that question in different ways. In particular, he says, those believing in a personal Creator might find it difficult to end the life of a terminally ill patient, regardless of brain activity. But, he asks, "Is the image of God in the person whose cerebral function no longer exists?"

If, as theists argue, we are made in the likeness of God, is that likeness seated in the brain? And, with the loss of higher brain function, is that likeness, that personhood, gone?

"This is an old question," Gonsoulin admits. It seems our culture hasn't found its answer.

Third and last, he says we should face the immediate issue of living wills. If anything positive came out of the media's lathering itself in the Schindler and Schiavo family tribulations, it has been a call to action.

Tim Pearman sounds hopeful as he tells the story of two cancer patients at Tulane who heeded that call after the dust settled in Florida. Both patients, whose cancers were already at Stage Four when admitted, refused to address end-of-life issues with their families. After the media deluge, these two patients finally talked to their loved ones and their physicians about living wills for the first time.

Pearman, a clinical assistant professor of psychiatry and neurology and director of the Patricia Trost-Friedler Cancer Counseling Center, sounds pleased, almost relieved, to share these successes, where patients learn that it's all right to talk.

"In the vast majority of cases," Pearman says, "facilitating communication between the family and medical caregivers leads to a resolution which is agreeable to everyone. Discussing these issues is one thing; asking your family to stop feeding you down the road is a little different. The Rev. Don Owens says we are too quick to jump to unreasoned conclusions when feeding tubes are involved. "We have difficulty depriving someone of food and drink," says Owens, chaplain at the Health Sciences Center and assistant professor of medicine and psychiatry.

Owens' office is tucked down a hallway just off the lobby of the School of Medicine -- a roil of books and dog-eared articles and loose papers. A tiny refrigerator hums in queasy harmony with the classical music that springs from somewhere under a book.

The only thing fixed about this man is his clerical collar, but the ready laugh and condition of his office belie an articulate mind, a mind that might have something to say about everything.

Food and drink can be quite painful to the dying patient, he says, where the desire to cease all eating and drinking is a natural part of the dying process. In this light, the deprivation of food and water is normal. "This is difficult for us to comprehend," he says.

Some see a slippery slope. Many in the disabled community, for example, take issue with the removal of any life-sustaining measures and see this as a harbinger of darker days "I understand the concern of the disabled, but this is very different," says Owens. He gives examples from Nazi Germany, when disabled persons were classified as non-persons for the purposes of extermination.

The difference here, argues Owens, is that patients like Schiavo have lost all function in the cerebral cortex, unlike quadriplegics, for example, who absolutely have the capacity for thought, memory, and other higher brain functions. Still, if personhood is seated in the brain, the gray area between higher and lower brain function worries many.

Owens says rest easy. "This is an orange and apple issue," he says. "The disabled need not worry, although I understand their anxiety."

Robert Martensen, professor of surgery and James A. Knight, MD, Professor of Humanities and Ethics in Medicine, has written quite a lot about the brain. His recent book, The Brain Takes Shape, addresses the question of personhood and traces the answer through Western culture from the Greeks to the present.

Martensen's office overlooks Tulane Avenue on the second floor of the J. Bennett Johnston Building, downtown. The building and his office are all clean lines and ordered space, but without the sterility of a hospital. His work on the issue of personhood has quite a few implications for the ethical issues around death.

In a rich, warm baritone, Martensen argues that the West is the only society in the world that's ever argued that the brain is the dominant organ in the body, that it's what defines us as being a person.

With patients in a persistent vegetative state, he says, "Nothing that processes sense, thought, memory is occurring." Obviously, a patient in such a state is a far cry from a patient with a disability.

"Certainly, the argument from a traditional metaphysical view is that yes, there is spirit that has agency, even though we can't see it and measure it and weigh it." Again, the question is of ultimate realities. Is personhood in the brain or the soul?

Martensen says our government allows us to answer this question for ourselves rather than for each other: "It seems to me a pretty good compromise in this country that we've worked out, given these different views. It allows a whole range of private belief." He says we are then saved from a totalitarian state that might demand the termination of all patients in grave conditions, or who might demand the continuation of life support regardless of a person's wishes.

"We've developed this middle ground," he says.

One thing that almost everyone agrees upon, however, is that patients like Terri Schiavo, patients who have been in a persistent vegetative state for many years, have no hope of recovering any significant brain function. Despite a handful of dissenters who claimed she could be rehabilitated, the medical community largely spoke with one voice, and the media's lack of attention to the rehabilitation issue appeared to second this consensus. Among these patients who have no hope of recovery, there will be those who have left behind no wishes, no living will. They'll also leave behind families who disagree. This is the gray area that caused a ruckus in Pinellas Park.

Susan Krinsky reminds us that Michael Schiavo met his burden of proof in the Florida courts, giving "clear and convincing evidence" that his wife would not have wanted to be kept alive in her state, whereas her parents provided no evidence to the contrary.

"If nobody has any information about what somebody wanted, then you can't pull the plug," says Krinsky, associate dean of Tulane Law School. This should reassure those who fear we are on a slippery slope toward a society that pushes death.

Krinsky teaches several courses in health law, including a course at the Tulane School of Public Health and Tropical Medicine. She shared her thoughts in the sitting room of her uptown home, with the occasional neighborhood sounds of dogs barking and children playing and bicycles peddling up the narrow street. It was informal and relaxed, like so many uptown Sundays, and strangely in sync with the gravity of the discussion.

Noting the Karen Quinlan and Nancy Cruzan cases, the two major right-to-die cases of the last 30 years, Krinsky says, "It became pretty clear that you could disconnect a respirator or a ventilator, but this whole idea of nutrition and hydration was another issue entirely."

Nevertheless, with Michael Schiavo having proven his case to the courts, Krinsky says the attempted intervention of politicians and protesters was not medical but moral and political.

"Absent evidence that somebody's trying to steal somebody's money or murder them, what are the state and federal governments doing in this?" She lets the question hang there, and you can see the teacher in her. On the other hand, she admits, "I think they all felt like they were doing the right thing."

In the wake of such media coverage and political maneuvering, laws that will clarify the kind of evidence necessary to end a life will likely be passed, Krinsky says.

"I don't know if it's going to make it any clearer," she says with a shrug. "Part of the problem is that it's really hard to pass laws that are going to cover every situation."

In the end, Krinsky is satisfied with the behavior of the legal system. "The courts did their job," she says. "Our system worked." It's this very system that troubles some Americans, though.

Robert Talisse, faculty fellow at the Center for Ethics and Public Affairs of Tulane's Murphy Institute, argues that the fundamental, largely ignored question around the end-of-life debate concerns the moral role of governments. He says the United States government, the largest single experiment of the Enlightenment, purports moral neutrality based on principles of reason and rationality apart from religion. He also argues that this neutrality might be just a specter.

Speaking over the phone, Talisse's passion was no less palpable. His voice rises and falls with all the inflections of a born teacher who knows how to keep students awake, posing and answering his own questions, and ready to laugh at those positions he finds logically impossible, or ridiculous, or both.

"It seems that the state's official posture of not making moral decisions seems less and less tenable," he says, and he sounds like it's not such a bad thing. Governments are just involved in too many moral issues, like when to go to war and how to ensure the welfare of its citizens.

For Talisse, this artifice of neutrality may be a fatal flaw of the Enlightenment, and he seems more ready than most to admit it. "Morally neutral politics is impossible," he admits.

For example, he says, the legal system did its job and followed the rule of law, but this led to death-by-starvation. "Something's wrong with that," Talisse says. "This involved some degree of cruelty," despite differences in sensation between healthy and severely ill patients.

Many in America voice reluctance to endorse a system whose supposed neutrality could lead to such things. This camp included such odd bedfellows as Jessie Jackson and Bill O'Reilly, Ralph Nader and President George W. Bush.

Talisse says we need more deliberation in the culture war and less outright dismissal of opposing viewpoints. Whether we couch this war as Conservatives vs. Liberals, Religious Folk vs. Hyper-Rationalist Folk, or Yankees vs. Braves, calling the other side "dumb" at best or "evil" at worst is doing little good.

Talisse says any healthy debate is composed of complex arguments using nuance and subtlety, not five-second sound bites using an accompanying visual and pithy lead-in.

"Neither side gets fair time to state their cases," he says, and you can hear the hope in his voice, hope for something better in America, for a conversation, not a fistfight. His new book, Democracy After Liberalism, just released by Rutledge, addresses this issue at length.

The medical, legal, religious and philosophical debates launched by the Schiavo case provide just one more example of how much we disagree as a people. Sit down at any table in the cafeteria and you're either with your best friends or worst enemies. It might be safer to talk about the mashed potatoes.

And here's the rub: If a government cannot escape a moral stance, whose code of morality should be used? Right now, everyone in America has the same answer: "Mine."

"This was a battle in a larger war," says Eric Mack, professor of philosophy. Like most, he doesn't veil his own opinion on the matter. "This is part of a campaign to limit the freedom of people to make decisions about their own lives," he says, and you can hear what sounds like exasperation in his voice. If this is a battle, he's fighting.

Myron Crockett, campus minister for Intervarsity Fellowship, reminds us that Terri Schiavo's election as a Temporary American Icon was just one more symptom of a culture saturated in symbols that lack any real meaning. The Left, he argues, used Schiavo as a symbol to represent the subjugation of individual rights, although the issue was about far more than that. The Right, on the other hand, used her near-lifeless body as a symbol to represent how the strong should protect the weak, even though there was more to it than that.

"Both sides are convinced that they are right," says Sarah Deland, assistant professor of psychiatry. One side said she's already dead. Another side said she's not dead yet. But both sides say life is sacred. Both sides say we must do all we can.

No matter what your position, Crockett urges us to remember that Terri Schiavo was, in fact, a person. "People are not symbols. Symbols work in the propagation of ideas. People do not."

We watched a person die. Not an idea. A person. We stood outside that hospice and hoped. We stood outside the Vatican and prayed. Now we stand outside our own country and wonder.

No one knows how this story ends. While we should all sign living wills and advanced directives, we are left with the larger question, a question about what our nation thinks of freedom, of responsibility, of ultimate reality and science and metaphysics and morality.

These are heady questions to ponder as spring fades into summer and we forget where Pinellas Park is. Now spring is just a thought, just an entr'acte in this play of seasons, and we are reminded that life is just that brief. Spring hopes eternal, but only for a little while.

Harrison Scott Key is assistant director of corporate and foundation relations at Tulane University Health Sciences Center and teaches playwriting in the Department of English.

Tulanian

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