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Research, recently published in the journal Psychophysiology, sheds new light on the condition known as the completely locked-in state (CLIS), a state where the patient’s total lack of muscle control makes communication virtually impossible.

Patients totally paralyzed with advanced ALS (Lou Gehrig’s disease) are among the patients considered to be in CLIS. ALS is a motor disease which progressively destroys the peripheral and central motor system in the body.

German researcher Niels Birbaumer [University of Tübingen] found that when brain-computer interfaces (BCIs) are used before the patient goes into the CLIS state, the patient can learn to communicate using the electronic device and continue that skill in the CLIS state.

BCIs use activity in the brain to communicate by means of external devices like computers.

One of Dr. Birbaumer’s most significant findings was that the ALS patients studied rated their quality of life far better than their caretakers or family members did, even when the patient was completely paralyzed and on a respirator.

He also found that “only 9% of the patients showed long episodes of depression, most of them in the time period following the diagnosis and a period of weeks after tracheostomy.” “In fact,” he wrote, “they are in a much better mood than psychiatrically depressed patients without any life-threatening bodily disease.”

According to Dr. Birbaumer, most ALS patients choose not to have artificial respiration or feeding and then die of respiratory problems. They are often pressured into foregoing such treatment by doctors and family members who think their quality of life is too low for such measures.

In the Netherlands and Belgium where euthanasia is legal, very few patients choose to continue life. “The facts on end-of-life issues and quality of life,” Dr. Birbaumer concluded, “do not support hastened death decision in ALS….” [Birbaumer, “Breaking the silence: Brain-computer interfaces (BCI) for communication and motor control,” Psychophysiology, 43 (2006), 517-532; Int’l Task Force on Euthanasia and Assisted Suicide Update 2006, Vol 20, No 5]