Friday, April 30, 2010

A story of hope

A few weeks ago I wrote about Rom Houben, a brain-damaged Belgian man in a coma for 23 years who began to communicate, and who had apparently been conscious the whole time.

Now the story appears to be not quite as good a story as it first appeared.

Rom is still physically disabled. A speech therapist was holding his finger as he moved from letter to letter to spell out words on a keyboard. More extensive tests have revealed that the therapist had unwittingly been projecting her own thoughts, presented as the patient's.

But doctors still believe he is conscious. "We'll simply have to find another way to him," said the doctor in charge.

Then came news that researchers had discovered how it was possible for patients in a so-called persistent vegetative state to communicate, giving responses to simple biographical questions.

The brain signals for "yes" and "no" are complicated, so a team headed by Dr Adrian Owen of Cambridge and a Belgian neurologist asked a PVS patient to think of playing tennis for "yes", and think about moving around the patient's home - which causes activity in a different part of the brain - for "no."

Using a hi-tech functional magnetic resonance scanner, they picked up the resultant brain activity. The patient's responses were correct every time.

The researchers believe 17 per cent of PVS patients will be able to communicate with doctors.

Then there is the story of Martin Pistorius.

At 12 years old, Martin developed meningitis and tuberculosis of the brain and was left in what doctors said was a vegetative state. His parents refused to consider withdrawing food and water and clung to the hope that he would recover.

In fact Martin was conscious - just unable to communicate. "I was locked inside my body, my brain screaming for relief, feeling overwhelmed and utterly powerless. There were times when I was really, really frightened. All I looked forward to was death."

It was a good day if a fly walked across the ceiling. At least it gave him something to look at.

When he was 26, an aromatherapist who came to give Martin massage "saw something in his eyes" that told her he was conscious. She talked with Martin's parents, who agreed he should be assessed at a specialist centre.

He was asked to gesture to indicate his choice between objects. He couldn't gesture, but they could tell from the way that his eyes focussed that he understood and was trying to respond.

His mother gave up her job to help him. He had intensive physiotherapy and operations to correct deformities caused by his spastic condition. He regained the use of his hands and learned to use a speech synthesiser similar to the one used by Stephen Hawking.

Martin still uses a wheelchair to get around. But he is working as a website developer, studying towards a degree in computer science - and married to a beautiful young lady. They are deeply in love, and looking forward to a long and happy life together.

"Helping people to die" is not the answer. Human life is infinitely precious. Caring, not killing, needs to be the aim.