The Soft Tyranny of Expertise

Senate Majority Leader William Frist, M.D., says that Terri Schiavo is aware and responsive, based on his viewing of an edited videotape made by her parents. Frist's pronouncement is an egregious breach of medical ethics, and I am surprised there has not been much more public condemnation from his physician colleagues.

Frist is saying that the dozens of neurologists who have examined Terri Schiavo, including the ones who have been taking care of her, who have testified under oath in the course of 19 separate court hearings, are all either incompetent, or are part of a conspiracy, of unspecified motives, to murder her using a campaign of lies. But of course, that is essentially the position of all of the members of Congress, GW Bush, and the legions of the holy who are demanding that government compel her doctors to keep her heart beating.

In this case, the next of kin wishes to end futile treatment, so the law is clear enough, though other family members refuse to believe the physicians' conclusions. But in other cases, such as a recent one in Boston in which a woman with ALS, completely paralyzed and unable to communicate, was kept "alive" in Massachusetts General Hospital at her daughter's insistence for many years. Her physicians went to court to try to get a court order allowing them to terminate life support; eventually the parties reached a settlement.

The fact is that the medical institution -- which is the sociologists' name for all of the people, organizations, roles and norms which deliver medical services in this country -- has evolved some practices and rules regarding the end of life, with involvement of the courts and some legislative participation but far less public discussion and debate than was necessary. The result is the Schiavo mess, which proves that a significant part of the public does not understand and is not comfortable with the regime of law and practice which has emerged.

I believe Terri Schiavo's doctors even if Bill Frist does not, and I believe that Michael Schiavo is doing the right thing. But that is beside the point. It is natural for people to want to believe that their loved one is responding to them and is not really gone. And it is easy for them to interpret her random and reflexive movements as somehow meaningful. The state of being awake yet unaware is entirely unfamiliar, and just does not seem plausible to them. But it is plausible if you know something about the architecture of the brain and how different parts of the brain are associated with different components of human behavior and experience.

According to radiologic findings, Terri Schiavo's cerebral cortex has disintegrated. That means she cannot possibly have any cognitive ability, understanding of her surroundings, or conscious awareness, at least not as humans ordinarily experience it. But other parts of her brain can still keep her breathing, make her eyes move, cause her to grimace. Does it really make sense that she smiles because she is feeling some sort of bliss, given her condition? Of course not, but her parents desperately wish to believe otherwise.

So I understand at least part of what is troubling to some people. They are very uncomfortable depending on a new priestly caste, people with medical degrees who have been admitted to what is to them, largely secret knowledge and assigned special titles and powers, to make ultimate decisions. They don't want to be told that their child's or their parent's or their spouse's situation is hopeless, they don't want someone to perform mysterious rituals and then tell them that the end has come when they are still capable of believing otherwise.

And perhaps there is a slippery slope here. Actually we may already have fallen down it a long way. The physicians' expertise is real, but our bodies and our lives still belong to ourselves. If we are powerless, we expect our close kin and loved ones to stand up for us, even if remote and august personages in white jackets are declaring us beyond help. At the same time, the physicians' expertise is a resource, a source of power for us in making, hopefully, the right decision. How can we democratize that resource, coopt the power for ourselves and our loved ones, without destroying it? After all, the whole point is, they know more than we do. That's why we pay them.