by Jane St Clair
Author of Walk Me to Midnight
Rom Houben was a handsome athletic student who landed up paralyzed after a terrible accident. Unable to communicate, he lay in the back wards of nursing homes for 23 long years. Then one of his doctors got creative and used technology to scan his brain. To everyone’s astonishment except his mother’s, Rom had been fully conscious and aware all that time.
The case is changing what we know about patients in a vegetative state also known as the “brain-dead.” Most recently, a team of researchers in Britain and Belgium studied 54 patients identified as “vegetative” and found that one in ten was conscious to a degree no one thought possible. When the doctors asked them questions such as, “Do you have a brother?” — the “yes” and “no” parts of their brains lit up in a similar way that they do in normal people. When some of them thought about tennis, they could “play tennis” in their minds. This study appears in the latest edition of the New England Journal of Medicine.
Another study done last year at Liege’s Coma Science Group found that 41% of patients diagnosed as being in vegetative states were actually minimally conscious.
You’d think that results like this would excite medical people and push research into a new and different direction, maybe to answer questions like: How can we better communicate with people who are minimally conscious? Is there a way to enable them to use robots and computers to talk to us? How can they let us know if they are comfortable? What do they need right now? Is there a way to help them better participate in society? In the “Star Wars” movies, all the doctors were robots.
Just as the space program opened up amazing breakthroughs in computer development and miniaturization, so could such research among minimally conscious people help us develop new ways of teaching, learning, and communicating. Perhaps we could even find the breakthroughs we need to help autistic children, now one in every 100 babies born in the United States.
Yet when the New York Times reported on the New England Journal of Medicine research on its front page February 4, 2009, what was their concern? Not breakthroughs in science. Not how to better communicate with minimally conscious people –no, sir — none of the above. Their big concern was medical ethics. If 10% to 41% of brain-dead people are minimally conscious, is it still okay to remove their feeding tubes? Knowing that they are minimally conscious makes it harder for families to decide “end of life” issues. Talk about robot-doctors!
In the Times article, Dr. Joseph Fins, chief of the medical ethics division at Weill Cornell Medical College in New York, expressed this worry — “If you ask the patient whether he or she wants to live or die, and the answer is to die, would you be convinced the answer was sufficient?” Is that really the first question we should ask them when they wake up? Now that you’re awake, do you want us to kill you?
Dr. Alan Ropper, a neurologist at Brigham and Women’s Hospital in Boston, said in an editorial accompanying the research in the New England Journal, “Physicians and society are not ready for ‘I have brain activity. Therefore I am.’” Why not?
So the question is not how can we better communicate and help these people, but whether they should live or die. Under some of the provisions in new legislation now before Congress, health care providers paid with government money could withhold food and water from people in such states of consciousness, even though that is probably a violation of the Americans with Disabilities Act. And, as Rom Houben clearly teaches us, mistakes happen.