Patients With Locked-in Syndrome May Be Able to Communicate After All

ALS progresses, the neurons that control muscle movement begin failing, one after another. Patients lose the use of their arms and legs, and eventually, their breathing. Now they’re locked in, dependent on a medical ventilator. The last to go is the eyes, a condition called complete lock-in.
         

How do you know what someone is thinking, if you can’t communicate with him or her? For a long time, scientists thought that, at this stage, patients were incapable of directed thought. But a team of researchers at the Wyss Center for Bio and Neuroengineering, in Geneva, Switzerland, has new evidence that contradicts this, and a new way to get insight into what completely locked-in patients are thinking.

The way they did this was to apply traditional means of non-invasive brain scanning in a new application. EEG, which reads brain waves, can record a person’s awareness and vigilance. Near-infrared spectroscopy, or NIRS, measures the oxygenation of the blood in a person’s brain, which a lock-in patient can learn to control—if they are aware and vigilant.

Even just knowing the mental state of locked-in patients could have huge ramifications for the way we approach care for them. Birbaumer’s study featured just four patients, but each had chosen, while they still could, to continue to receive care and to stay alive. Using the new technique, Birbaumer asked each patient questions from the World Health Organization’s quality of life assessment, and received almost uniformly positive answers. All four people repeatedly responded “yes” to the question, “Are you happy?” But Birbaumer says only 5 percent of ALS patients choose to go on artificial respiration.

“The reason that people decide to die when they [have to] go on respiration is mainly caused by the negative attitude the environment and the family and the doctors have toward the disease and toward paralysis,” says Birbaumer. “The outside world are judging the quality of life terrible … doctors and the whole medical establishment and insurance companies and everybody reinforces that belief, and that’s why the people then die, which is a tragedy. This is an immense tragedy.”