Mind’s mysteries leave issue murky

CHICAGO – Since James Wolfe’s snowmobile rolled over in December, severely injuring his brain, the former power plant official has been in a netherland known as a minimally conscious state.

His wife, Jennifer, doesn’t know what he is thinking, or even whether he can think at all.

Does his mumbling and babbling mean Wolfe is trying to communicate? When Jennifer takes James’ hand and his grip tightens, does that signal acknowledgment of her presence?

“I don’t know,” said Jennifer, who lives in Beach Park and whose doctor at the Rehabilitation Institute of Chicago has said James is minimally conscious. “It’s so hard to tell.”

Indeed, much remains unknown about the condition at the outskirts of consciousness, which became part of the right-to-die debate over Terri Schiavo.

Her parents insist their 41-year-old daughter is minimally conscious because she smiles and seems to respond in other ways. But Florida courts have ruled that Schiavo is in a more profoundly compromised condition known as a persistent vegetative state, without true awareness or hope for any improvement.

Some ethicists say there is a deep difference between life-and-death decisions made on behalf of someone who is alert but not aware of herself or her surroundings and a person who retains even limited awareness.

One is a human shell without a human spirit, they suggest; the other is a sentient being in whom consciousness flickers, like a light bulb with a bad electrical connection.

For physicians and families, however, telling the difference between the two conditions often is extremely difficult.

In any case, no tests can definitively determine what Schiavo knows and feels. Will she feel pain or discomfort as she starves to death now that her feeding tube has been withdrawn? There is no way to know for sure, medical experts say.

“For all that medicine can do, we have no way of looking into another person’s mind and understanding what is there,” said Dr. James Bernat, professor of neurology at Dartmouth Medical School.

Though Schiavo has become a cause celebre, her case is not unusual. Every day in hospitals and nursing homes, physicians and families struggle to understand what is going on in people who have suffered severe brain injuries: Do they feel? Do they think? Is this the way they’d want to live?

In trying to address these questions, distinguishing between minimally conscious and a vegetative state is important, medical experts report.

A person in a vegetative state is “awake but not aware,” said Dr. Jeffrey Frank, director of neurological and neurosurgical intensive care at the University of Chicago. Though reflexes may cause them to turn toward a sound, gaze at an object or respond to touch, “there is no thought connected … these are primitive, instinctual responses.”

Some patients begin to improve and show signs of consciousness up to a year after a severe brain injury, when healing is most likely to occur.

But if someone is in a vegetative state for more than 12 months, medical experts agree “there is no possibility of recovery,” said Dr. Jack Kessler, director of the clinical neuroscience research institute at Northwestern University’s Feinberg School of Medicine.

People in a minimally conscious state give evidence of some awareness and connection with their environment. Signs are subtle but persistent over time and can include tracking a person visually, blinking in response to questions, grasping an object purposefully or moving a finger or a limb when asked. Experts estimate 120,000 to 280,000 Americans who have suffered traumatic injuries or heart attacks and strokes fall into this category.

“The prognosis is better for both spontaneous recovery and the ability to harness treatment interventions to improve functioning,” said Joseph Giacino, associate director of neuropsychology at JFK Johnson Rehabilitation Institute.

Once again, however, time makes a difference and prospects for significant functional recovery after 12 months are “very low,” Giacino said.

The challenge for physicians lies in discerning random reflexive behavior from intentional response, which may look very similar on the surface.

Studies have documented high rates of misdiagnosis. In one 1996 British Medical Journal report, 43 percent of patients admitted to a London hospital brain-injury unit were found to have been wrongly classified as being in a vegetative state. Other accounts have put misdiagnosis rates at 18 percent.

“The slow-to-recover patient is often incorrectly labeled as being in a vegetative state,” wrote Dr. Keith Andrew, director of research services at London’s Royal Hospital for Neuro-Disability in the British Medical Journal.

Giving hope to many is the recent example of Sarah Scantlin, a brain-damaged Kansas woman in a minimally conscious state who started talking last month after 20 years. And in June 2003, an Arkansas man deemed minimally conscious regained the ability to read and talk 19 years after a truck accident.

“The question for all of us is, how many minimally conscious people are there in this country, many of them probably in nursing homes, with more capacity than anyone knows?” said Dr. Joseph J. Fins, chief of medical ethics at New York-Presbyterian Hospital/Weill Cornell Medical Center in New York City.

“The notion of people isolated from their community and not perceived as having any kind of life of mind when in fact they do is sobering.”