Consciousness and the culture wars, part 2

After years at a slow burn, the controversy over Terri Schiavo has hit the national news. Schiavo lost consciousness in 1990 after a cardiac arrest, and her husband recently won a lawsuit to have her feeding tube removed, over the objection of her family. Then on Tuesday, Governor Jeb Bush ordered that her tube be reattached, using powers given to him by the Florida legislature the day before.

If ever there was an argument for a living will, the Schiavo case is one. She supposedly told her husband she wouldn’t want to be kept alive artificially, but never wrote anything down. If she had, the decision to give or withdraw care might have been a simple one. Instead, her husband and her family–and the country by proxy now–is in a muddled shouting match over life, death, the right to die, consciousness, and the soul.

There are several separate debates here, but people have been jumping back and forth between them as if they were all one. One argument is over the right for a surrogate to make a decision about whether someone should refuse not only medicine but even food. This is controversial no matter what state of mind a patient is in. (The Times points out today that the Florida legislature, by taking over the decision about whether Schiavo lives or die, has probably passed on unconstitutional law.)

The state of Schiavo’s mind is the source of a second argument. Her family has posted videos on their web site that they claim shows she reacts to loved ones, smiles, and understands what they say. They also say that she could respond to therapy and improve.

The family claims to have testimony from 15 doctors backing up their claiims, but I can’t find anything on their web site, so it’s hard to know what these doctors are saying. But I do know that Dr. Joseph Giacino of the JFK Medical Center in New Jersey has taken a look at the videos and hasn’t found them persuasive. (See his remarks in a story last week in Time.) Giacino is one of the top experts on the rehabilitation of people with impaired consciousness. He also developed an objective way to gauge the level of consciousness in people like Schiavo. When I interviewed him for an Sept. 28 article for the New York Times Magazine, he explained how people in vegetative states not only have their eyes open, but also can assume disconcerting facial expressions. He gave me a tour of the Center for Head Injuries, where he works, and I could see how easy it is to read into a face what we want to see.

Giacino and others have defined an intermediate stage of consciousness, called the minimally conscious state. It’s for people who show fleeting signs of awareness. He and his colleagues have shown that people who are diagnosed in a minimally conscious state are more likely a year after their injury to have better functional outcome than those who were diagnosed in a vegetative state. But the longer a person like Schiavo is in a vegetative state, the less likely it is that any recovery will happen.

It can be hard to accept this. I’ve been surprised to discover this firsthand in the reactions to my article. In it, I wrote about how brain scans of people in minimally conscious states can show surprisingly complex responses to the sounds of voices and other stimuli. People in chronic vegetative states show no such responses. Yet I find my article keeps popping up as an exhibit in arguments that Schiavo is actually responsive and could recover. The latest example is a letter to the editor of the Tampa Tribune. In every case, people want to mix up the results from minimally conscious patients and people in a chronic vegetative state.

Living wills may help avoid future conflicts, but my talks with experts makes me think that more is needed. We need a lot more research on how to make accurate diagnoses for people with serious brain injuries. And then we need to use that research to make sure that patients are carefully observed for more than just a few weeks, with both rigorous bedside exams and with brain scans. All this will be expensive, but it’s not as if our current state of neglect is a bargain. Hundreds of thousands of people are in vegetative or minimally conscious states, and their lifetime care can cost over a million dollars a piece. We can do better.

PS–Steve Johnson also muses on the strange paradox of the Schiavo case.