It’s Great Science, But All the More Need For a Living Will
11 May 2009
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 amyotrophic lateral sclerosis (ALS) commonly known as Lou Gehrig’s Disease. To me, it illustrates the best and worst of science.
Lou Gehrig’s Disease is a frightful malady. It’s an inch-by-inch slow paralysis that gradually and insidiously spreads throughout the entire body. The final phase is total paralysis, but with a normally functioning brain. Patients are literally “locked in” inside their bodies. At the end, patients 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, Germany, has taught patients suffering from ALS to use a computer by controlling their brain waves. This is a historical breakthrough in science in that it allows ALS patients to communicate entirely by thought alone.
Electrodes, placed on the patient’s scalp, transfer signals from the brain to a computer. The patient then has to practice controlling his or her brain waves. Dr. Birbaumer admits it’s not easy to train the brain to move a white ball up or down the computer screen and to select individual letters on the screen. But it is possible.
Brain-computerized thought is a very slow way to communicate even after the technique is mastered. 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 paralyzed patients are not going anywhere. Besides, it must be wonderful to be able to communicate imprisoned feelings to others. So one must congratulate Dr. Birbaumer and his colleagues for bringing some quality of life (QOL) to those suffering from Lou Gehrig’s Disease.
But how much QOL? Dr. Birbaumer claims a technique has been developed to measure the QOL of patients on respirators. A research team compared QOL scores of 78 patients with ALS, 78 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 remained in a normal range. In effect, he claims that ALS patients attached to respirators 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 to believe that ALS patients have QOL scores 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, 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, are all horrifying.
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 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. Today we spend huge amounts of money on heart disease and little on degenerative nervous diseases.
So many readers have requested “The Gifford-Jones Living Will” that it’s been reprinted. It can be obtained by sending $5.00 along with a self-addressed stamped envelope to Dr. Gifford-Jones, First Canadian Medical Centre, 1 First Canadian Place, P.O. Box 119, Toronto, Ontario, M5X 1A4
