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Brain Death Doubters

By Michael Cook

Recent cases show that doctors still do not agree about when death actually happens.

They don’t call them scare quotes for nothing. But the curlicues bracketing the term “brain death” indicate more than a fear of becoming a living corpse or of being a burden on a grieving family; they also underscore the uncertainty hovering over a medical consensus that “brain death” is death, period – no scare quotes. And because of some highly publicised cases in the United States it is turning into one of the liveliest debates in bioethics.

In November in Fort Worth, Texas, the relatives of 33-year-old Marlise Muñoz, a woman who was 14 weeks pregnant, wanted her to be taken off life support. “Brain dead” meant dead, they insisted. But her hospital refused, believing that it would be breaking a Texas law which mandated life support of a pregnant woman to save the life of a foetus.

On the other side of the country, in Oakland, California, 13-year-old Jahi McMath was declared brain dead in December and the hospital wanted her to be taken off life support. But her relatives refused, believing that she was still alive.

The contradictory responses of the hospitals and the relatives show that the public does not fully understand what “brain death” is. More unsettling was the revelation that bioethicists are not completely sure either.

Most of them, to be sure, agree with the consensus. In the New England Journal of Medicine, one of America’s best-known bioethicists, Art Caplan, and two colleagues used the debate about Marlise and Jahi to insist that too much is at stake to change it.

“The determination of death is a highly significant social boundary. It determines who is recognized as a person with constitutional rights, who deserves legal entitlements and benefits, and when last wills and testaments become effective. Sound public policy requires bright lines backed up by agreed-on criteria, protocols, and tests when the issue is the determination of death.”

But invocations of “good public policy” will not suffice to justify the consensus to many grieving families. In fact, Caplan and his colleagues admit that their definition is an arbitrary one. “Although one could conceivably draw the line somewhere else, such as loss of cognitive functioning,” they say, “the reliability and social consensus that has emerged around brain death as death is reflected in the broad legal agreement under which brain death is recognized in every state.”

There are sound medical reasons to believe that “brain death” is death, but Caplan’s politicised version of the consensus has given rise to two schools of radical dissenters.

The first rejects the consensus completely. Its supporters draw on the research of Alan Shewmon, a Californian neurologist. They ask how a woman can possibly be dead if her body is able to nurture a foetus for weeks or months. There have even been some astonishing cases of “brain dead” youngsters who went through puberty. With so much of the body functioning, is a “brain dead” person really a corpse or is he or she a living human being with terrible cognitive disabilities? They question whether the current system of donating organs is ethical.

The second school of radical dissenters agrees with Shewmon that “brain death” is not death. But instead of concluding that the person must therefore be alive, their take-home is that the line dividing life from death is so fuzzy that killing cognitively disabled patients is not really murder. In fact, they advocate the abolition of the universally accepted “dead donor rule” that vital organs should not be removed from living persons.

Both approaches have such radical consequences that they could never be sold to doctors, much less the public. But they do show that the question of when we shuffle off the mortal coil is far from settled.

In fact, in a recent essay two distinguished American bioethicists, Franklin G. Miller and Robert D. Truog, denounced colleagues like Caplan for “making dogmatic pronouncements that do not accurately reflect the state of bioethics scholarship”.

So what really is happening? Is the consensus right? Or are the conservatives? Or the liberals? Or does a consensus really exist?

Stay tuned. What we do know is that “brain death” is a living issue.

Michael Cook is editor of the online bioethics newsletter BioEdge.