Brain-Computerized Thought the Best and Terrible Science
27 Apr 2003
It’s said that "a picture is worth a thousand words". And the one that I recently saw in The Medical Post is one that’s hard to forget. The picture shows a man totally paralyzed due to Lou Gehrig’s Disease. To me, in 2003, it illustrates the best and worst of science.
Amyotrophic lateral sclerosis (ALS) commonly known as Lou Gehrig’s Disease is a frightful malady. It’s an inch-by-inch paralysis that gradually and insidiously spreads throughout the entire body. The final phase is total paralysis. Patients are literally "locked in" inside their bodies. The only normally functioning organ is the brain. At the end patients with ALS require a respirator to survive and eventually drown in their own mucus. It must be as close to hell as one can imagine.
So why is its treatment the best of science? Dr . Niels Birbaumer, Professor of Neurobiology, at the University of Tubingen in Germany has taught patients suffering from ALS to use a computer by controlling their brain waves. This is a major historical breakthrough in science in that allows ALS patients to communicate entirely by thought alone.
Electrodes, placed on the scalp, transfer signals from the brain to a personal computer. The patient then has to practice controlling his or her brain waves. Dr Birbaumer admits it’s not an easy task to train the brain to move a white ball up or down the computer screen. And patients must learn to select individual letters on the top and bottom of the screen.
Patients who start to learn this method in the early stages of ALS do better than those who begin when totally paralyzed. But brain-computerized thought is a slow way to communicate even after they master the technique. For instance, it required 16 hours for one patient to write a letter.
But one can argue so what? Why does time matter? After all, these patients are not going anywhere. Besides, it must be wonderful to be able to communicate your feelings to others. So one must congratulate Dr. Birbaumer and his colleagues for bringing some quality of life (QOL), no matter how minimal, to ALS patients.
But how much QOL? Dr. Birbaumer claims a technique has been developed to measure the QOL of patients on respirators. The research team compared the QOL scores of 78 patients with ALS, 78 patients with depression and 92 healthy people.
Their conclusion? The QOL scores of ALS patients were lower than the healthy group as one would expect. But Dr. Birbaumer claims that their QOL scores were still in the normal range. In effect, he claims that ALS patients attached to a respirator are not severely depressed and find their lives worth living.
I understand that no one knows how one will react until faced with similar catastrophe. But I find it impossible t believe that ALS patients have a QOL in the normal range.
It’s this side of science that concerns me. I found it hard to stop looking at this patient’s picture, and tried to envision life under his conditions. The thought of being physically helpless 24 hours, the need for a catheter to collect urine, enemas for bowel movements, and someone to feed and care for you 24 hours a day. The thought of looking out into space day after day. The inability to even scratch an itchy nose.
So I find this research fascinating, but frightening. The ability of science to keep us alive long after we would normally have died. There is no doubt that some ALS patients prefer life under these conditions. I have absolutely no argument with their decision to survive at all cost..
But I have always believed in freedom of choice between life and death. The freedom to say, "I have had enough of this existence, and to choose to end my life."
Some readers will disagree with me on this point. But we must all agree that more research funds should be available to put an end to this horrendous disease.
Copies of the W. Gifford-Jones Living Will Can be obtained by sending $5.00 along with a self-addressed stamped envelope to First Canadian Medical Centre, P.O. Box 119, Toronto, Ontario, M5X 1A4
