Ellen Goodman: Shades of gray on gray matter

Of all the headlines on the story, this one took the prize for provocation: “Woman in Vegetative State Plays Tennis in Her Head.” I suppose this is what happens when science throws up a startling piece of new research and the media slams it into the court of public opinion.

In Britain, researchers have reported that a totally unresponsive 23-year-old woman showed signs of awareness on a brain-imaging test. When asked to imagine playing tennis, her brain lit up the same neural pathways as a healthy brain. When asked to imagine walking through her house, the MRI revealed changes in specific brain regions that mimicked healthy people.

The exuberant lead researcher, Adrian Owen, said the results “confirmed beyond any doubt that she was consciously aware of herself and her surroundings.” A colleague even raised the possibility that some vegetative patients have “a rich and complex internal life.” Tennis in her head.

What are we to make of this? An editorial in Science magazine where the research was published was quick to warn that this case is nothing like that of Terri Schiavo. The British woman has something Terri did not have: a cortex. She suffered an injury, not a lack of oxygen. She was in her unresponsive condition for five months, not 15 years. She was not in a persistent vegetative state.

Nevertheless, those who play politics in their heads have found this research useful. The pathways to the pro-life blogs describing Terri’s death as murder also lit up. Terri’s father, Robert Schindler, declared game, set, match in the controversy: “This new case is not surprising to our family.”

But what about the rest of us who were fully aware that Terri had no inner life, rich or poor? What about those of us who believed all along that Terri was, ironically, one of the easy cases. Surely, as one bioethicist said, this research creates another shade of gray in the understanding of gray matter. And in decisions that revolve around life and death.

We don’t know if similar patients will show the same level of awareness. Indeed there are some who believe that the British researchers over-interpreted what they saw. But an estimated 6,000 Americans are in a vegetative state and another 100,000 Americans exist in some state of partial consciousness. We know there is a bell curve of consciousness, a range of symptoms and prospects for recovery among such patients. A 23-year-old accident victim has a different prognosis than an 88-year-old stroke victim.

But we do not know if the researchers who suggest that vegetative patients may be “aware” of themselves and their surroundings have given us a hopeful story line or a horror story.

As University of Pennsylvania bioethicist Art Caplan says, “It’s not necessarily good news that someone might have some form of consciousness but not be able to interact emotionally, socially or communicate in any way shape or form. To spend your life dimly aware but unable to let anyone know you are in there is more the subject of Stephen King or Edgar Allan Poe than some sort of medical hope.”

For families who already are left with the hard choices about life and death, about treatment and nontreatment, this research, says Caplan, “will generate more guilt than light.”

How often science drives ethics into a ditch. Brain imaging may eventually help to answer the most poignant family question about a profoundly injured member: Does she understand me? If doctors can eventually determine which people can “come back” and how far, the technology may be worth the emotional and financial price. But they are unlikely to make hard decisions any easier.

No MRI can say whether that “rich, inner life” is a tapestry of hope or a nightmare. Which cliché fits a locked-up awareness? “While there’s life there’s hope”? Or “a fate worse than death”? The researchers, in all their enthusiasm, cannot answer the fundamental question that was indeed raised by the Schiavo case: Would you want to live like this? Nor can technology, with all its power, tell us what is right and wrong, humane and inhumane.

Nearly a year after the accident, the British patient had advanced into a state of minimal consciousness. She could follow a mirror with her eyes. But no machine can tell her family or doctors whether she wanted to live “like this.” The deep family conversations that were prompted by Terri Schiavo’s fate are not simplified by this science, but, rather, expanded.

Woman in Vegetative State Plays Tennis in Her Head. But is it a game or a trap?