Legacy Matters

There's more 'there' there.

A few years ago, unresponsive patients  were classified as comatose (eyes closed and responses limited to basic reflexes) or vegetative (eyes opening and closing in a cycle of sleeping and waking but without any sign of awareness).

That began to change when Danny Rios, a 24 year old with a severe brain injury, unable to speak or move his body, was taken to Sloan Kettering Institute on Manhattan's East Side.    Danny was placed in an MRI machine and a recording by his sister saying she was there and she loved him was played over his earphones.

The doctors didn't know what to expect when they looked at the images from the scan. They certainly did not expect to see Danny's brain to fire its neurons in a way virtually identical to a healthy subject.  Even the visual centers of his brain lit up as "if his sister's words awakened his mind's eye," in the words of researcher Joy Hirsch, an expert in brain imaging at Columbia University.  "There didn't seem to be anything missing, " said Nicholas Schiff, an expert in consciousness disorders at Weill Medical College of Cornell University.

Even with a brain injury,  neural networks can reorganize themselves into something closer to full consciousness.  One doctor said of Danny ""He's aware of himself, he's happy, but it took a lot of skill to see it. If he ended up in a nursing home and started doing things like this, no one would have noticed."

The whole fascinating story - What if There is Something Going On in There by Carl Zimmer  - can be read in the New York Times magazine, September 28, 2003.  It can be accessed for free here.   

These researchers proposed a new category of consciousness  - the minimally conscious state -  in the Journal of Neurology  in 2002, a call endorsed by a string of medical societies and academies.

These researchers think it's likely that a vast number of people who might otherwise be classified as vegetative actually have hidden reserves of mental activity.    It may well be that we have given up too soon on many people they think.

As we learn that different parts of the brain regenerate and reorganize even as other parts go missing, if we knew say, that someone who appears locked in a persistent vegetative state, understands who she is, appreciates music, recognizes people and feels emotion, then many of us have to reconsider what we want to do with the 100,000 - 300,000 people in a minimally conscious state. 

If thousands of brain-damaged people are treated as if they are unaware, but in fact hear and register what's going on but are unable to respond, how do we care for them?  Listen to what one doctor had to say in Signs of Awareness Seen in Brain-Injured Patients, a New York Times article, sated February 8, 2005.  Free link here

This study gave me goose bumps, because it shows this possibility of this profound isolation, that these people are there, that they've been there all along, even though we've been treating them as if they're not," said Dr. Joseph Fins, chief of the medical ethics division of New York Presbyterian Hospital-Weill Cornell Medical Center. Dr. Fins was not involved in the study but collaborates with its authors on other projects.
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A better understanding of brain patterns in minimally conscious patients should also help cut down on misdiagnosis by doctors, Dr. Fins said. He said one study had found that as many as 30 percent of patients identified as being unaware, in a persistently vegetative state, were not. They were minimally conscious.
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The findings, if repeated in follow-up experiments, could have sweeping implications for how to care best for these patients. Some experts said the study, which appeared yesterday in the journal Neurology, could also have consequences for legal cases in which parties dispute the mental state of an unresponsive patient.

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"The most consequential thing about this is that we have opened a door, we have found an objective voice for these patients, which tells us they have some cognitive ability in a way they cannot tell us themselves," Dr. Hirsch said. The patients are, she added, "more human than we imagined in the past, and it is unconscionable not to aggressively pursue research efforts to evaluate them and develop therapeutic techniques."