NEWS FEATURE: When does life end? Brain-death guidelines at center of debate

c. 1999 Religion News Service UNDATED _ Consider three cases: Teresa Hamilton, 13, falls into a severe diabetic coma and is diagnosed as brain-dead. Her family refuses to accept this and insists on taking her body home, on a ventilator. Despite Florida law that states that people with dead brains are legally dead, and over […]

c. 1999 Religion News Service

UNDATED _ Consider three cases:

Teresa Hamilton, 13, falls into a severe diabetic coma and is diagnosed as brain-dead. Her family refuses to accept this and insists on taking her body home, on a ventilator. Despite Florida law that states that people with dead brains are legally dead, and over the protests of doctors, the family gets its wish.


Two students from Japan are shot in California and declared brain-dead. Hospital staff takes both off respirators without consulting their families in Japan, where brain death is not recognized. The families are horrified.

Finally, a Hasidic boy, Aaron Halberstam, is shot on the Brooklyn Bridge. He is diagnosed as brain-dead but his family, relying on rabbinical advice, doesn’t accept their 15-year-old as dead as long as a respirator can keep his body breathing. They turn to Genesis 7:22: “In whose nostrils was the breath of the spirit of life.” A sympathetic doctor refuses to declare Aaron legally dead until his heart stops.

All these young people died in the spring of 1994, but the arguments framing their final hours show how hard the application of legal brain death can be. The diagnosis requires painstaking, repeated tests for the lack of spontaneous breathing and electrical activity in the brain.

Nevertheless, some reject brain death for deeply held cultural or religious reasons. Others, like the Hamiltons, just can’t believe a loved one on medical machinery whose chest is rising and falling and whose skin is warm can really be dead.

Among medical experts, the definition of death is so contentious that two international conferences have failed to resolve it. A third, scheduled for Cuba in February, has attracted a contingent from the Vatican and a presentation from controversial Princeton ethicist Peter Singer. He is the utilitarian philosopher who argues that human life is not sacred.

“I think we’re in a phase in which death is being deconstructed,” said Dr. Stuart J. Youngner, a professor of psychiatry and biomedical ethics at Case Western Reserve University. “The more we talk, the more we write, the more we find the consensus defining death is superficial and fragile.”

Brain death is defined as the “irreversible cessation of all brain function.” In the 1980s, all 50 states followed a presidential commission’s recommendation and rewrote the legal definitions of death. To the traditional notion of a heart that stops beating and lungs that quit breathing, the states added the total and irreversible end of brain activity.

Supporters of the new definition said it would solve the shortage of transplantable organs. They predicted less futile, costly and undignified medical treatment. As Youngner explores in the new book he co-edited, “The Definition of Death: Contemporary Controversies,” the optimists were wrong.


And in reconceptualizing something as fundamental and sacrosanct as who is dead, lawmakers and doctors may have opened Pandora’s box.

New technologies have illuminated how impossible it is to pin down the exact moment of death. Advances in neurosciences have provoked unease. Brain activity can shut down slowly, in pockets and waves, with auditory and hormonal function lingering long after other parts of the brain are done.

It is possible, even in a classically dead body with no heartbeat or breath, to measure electrical activity in the brain for some minutes.

“What has been settled is merely statutory definition and diagnostic protocols,” writes Dr. D. Alan Shewman, a pediatric neurologist at the University of California at Los Angeles. “Beneath this superficial consensus there is tremendous confusion about the fundamental rationale for equating the death of one particular organ with the death of the entire organism.”

To prove his point, Shewman searched out 175 cases in which brain-dead bodies were maintained on machinery for more than one week. The conventional medical wisdom has been that these technologies only mimic life and the heart inevitably stops within a few days.

Shewman found 56 cases with enough information to analyze the factors affecting survival. Of these, half survived more than a month, nearly one-third lasted more than two months, seven survived six months and four topped the one-year mark. In one case, an 18-year-old whose brain was destroyed by meningitis as a toddler has been sustained on a ventilator at home for nearly 15 years.


“That’s very disquieting,” Youngner said. “How can someone be dead and take nutrition and have a heart still beating for more than a year?”

“We see the brain as the integrating organ of the body,” Youngner said. “And yet respiration occurs at the cellular level. Also, blood pressure can be maintained without the brain. These are disturbing findings if you believe bodily integration is the factor defining life. If you believe it’s consciousness, then it’s an entirely different thing.”

And in the arena of death, beliefs are critical.

“For some, death marks the cessation of particular duties to God; for others, death identifies the departure of the soul from the body; for others, death indicates a culturally acceptable point at which organs might be harvested; for still others, death marks the cessation of personhood; for others, death marks some combination of all of the above,” writes Dr. H. Tristram Engelhardt Jr., a professor at Baylor College of Medicine in Houston.

Shewman, who will speak in Cuba at the Third International Symposium on Coma and Death, notes that seeing death as “a loss of personhood from a biologically live body” might be a more workable definition for society.

But these tentative ideas are quite far from the religious ones through which much of humanity makes sense of death. And the notion of brain death clashes strongly with some religious traditions.

“Many Orthodox rabbinical scholars strongly oppose it, maintaining that where there is breath there is life,” said Robert M. Veatch, a professor of medical ethics at Georgetown University. “Japanese, influenced by Buddhist and Shinto belief systems, see the presence of life in the whole body, not just in the brain. Native Americans sometimes hold religious beliefs that oppose a brain-oriented definition of death.”


But compared to Germans, Danes and Japanese, Americans have been mostly quiet on the ethics of brain death. Historically, the American public has focused its qualms on abortion and beginning-of-life debates, Youngner noted. Elsewhere, end-of-life questions are much more prominent.

The Japanese call brain death “the death that cannot be seen” and worry that it gives over the determination of death to medicine and technology rather than to family. The Japanese have long resisted organ transplantation; it occurs infrequently, despite a recent liberalization in its law.

“As in Japan, Germany’s debate is enmeshed in the country’s struggles to define itself morally; the debate over brain death in Germany has become part of a wider anti-bioethics movement that is rooted in Germany’s Nazi past,” Youngner notes. In Denmark, polling and controversy has heightened public unease with physician-declared brain death.

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Physicians in North America fall into at least three camps. Some want “higher brain” death to be the standard. It holds that the neocortex, the region associated with thinking, is the seat of consciousness. Others argue for “brain-stem death,” favoring the lower-brain section that maintains the most rudimentary human functions.

“Without a brain stem, we could neither chew nor swallow nor breathe,” explained Dr. Fred Plum, chairman of neurology at Cornell University Medical School. “Without a brain stem, I am no longer a person, I am no more than a hopeless collection of organs, incapable of human vitality.”

Still other doctors warn against tinkering with the “whole brain” definition that created the original consensus.


“All these debates _ very intense, very intellectual and very real _ are translated into more basic questions with the public: ‘Is my doctor competent? Can I trust the health care system?’ “ said Youngner, who will be the keynote speaker at the Cuba symposium. “I think individual members of the public want to make sure, ‘When I’m dying, I want my doctor good at diagnosing this and [to make sure] there is no pain and suffering.’ But whether a certain hormone lingers in the brain after death, I don’t think so.”

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Dr. Laura A. Siminoff, a Case Western Reserve University professor of medicine and biomedical ethics, said this messy situation is partly a byproduct of medical technology. Before hearts and lungs could be sustained artificially, when one organ failed, the person simply died.

“The more technology we have, the more deeply we look at it, the more confused we get,” Siminoff said. “The more you know, the harder it is to say, `Here, here is the absolute time of death.’ “

DEA END LONG

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