Four ALS patients unable to move at all learned to communicate with their thoughts. Despite their condition, they all said they were happy.
What’s a person thinking when they cannot move a muscle? It’s a tragic question asked by family members of patients with ALS (amyotrophic lateral sclerosis), a degenerative disease that gradually robs them of movement. The patient can become ‘completely locked in’ where cannot even move their eyes, and exist in this state for years. Is the ‘person’ still there? Is he or she in pain or miserable? We may now have the means to answer those questions, thanks to new techniques developed in Geneva, Switzerland. Researchers describe how they overcame a limitation with standard EEG techniques, which might respond to involuntary eye movements rather than thoughts. At The Conversation, Ana Matran-Fernandez describes the procedure:
To overcome this problem, an international group of researchers used a different way of detecting neural activity that measures changes in the amount of oxygen in the brain rather than electrical signals. The research, published in PLOS Biology, involved a technique known as functional near-infrared spectroscopy, which uses light to measure changes in blood oxygen levels. Because the areas of the brain that are most active at any given time consume more oxygen, this means you can detect patterns of brain activity from oxygen fluctuations.
This technique is not as sensitive to muscular movements as the electroencephalography (EEG) systems used to measure electrical activity. This means the new method could be used to help ALS sufferers communicate both before and after they lose their entire ability to move because it is more likely to only record brain activity related to thoughts.
Four patients were tested with the new technique. They were trained to think ‘yes’ or ‘no’ while being asked questions. Monitoring the brain responses, the researchers achieved 70% reliable answers when testing them with questions they alone should know. One of the most interesting was, “Are you happy?” Live Science relates the surprising answers:
The question, “Are you happy?” was answered with a resounding “yes” by all four patients, repeated over four weeks of questioning.
“The striking results overturn my own theory that people with complete locked-in syndrome are not capable of communication,” professor Niels Birbaumer, a neuroscientist at the Wyss Center for Bio and Neuroengineering, told Seeker. “We found that all four people we tested were able to answer the personal questions we asked them, using their thoughts alone.“
In addition, Birbaumer told Seeker that one of the study’s most surprising findings was that “the patients reported being happy.” He said he and his team believe this may be because “quality of life depends on social care by the family and positive social attention from caretakers and friends.”
New Scientist gives the reaction of the lead researcher, Niels Birbaumer:
It has been impossible to know what such completely locked-in people are thinking. “It is assumed that being cut off from communication is one of the worst states a human can be in,” says Niels Birbaumer at the Wyss Center in Geneva….
The team used the device to ask the four people if they were happy. “They say that life is wonderful,” says Birbaumer.
NS reporter Jessica Hamzelou cautions that the positive responses may stem from the brain losing the ability to process negative emotions to protect itself. This seems unlikely, however, given the answers to other questions: for instance, one locked-in man responded a resounding “no” to his daughter’s request if she could marry a younger man. Science Daily elaborates on the paradigm shift from this experiment:
The results overturn previous theories that postulate that people with completely locked-in syndrome lack the goal-directed thinking necessary to use a brain-computer interface and are, therefore, incapable of communication.
Birbaumer is excited about the possibilities for improvements to this technique that may allow the patients to select letters and words with their thoughts. Perhaps, also, it will allow patients with other disabilities to communicate for the first time. Even with this initial step, “it already represents a big improvement in quality of life,” Matran-Fernandez realizes; “…it is safe to assume that the new technology is just the first step towards more sophisticated systems that would allow free two-way communication not based on simple questions.”
Just think how the relatives feel after years sometimes watching their loved one completely unresponsive. For the patients to be able to communicate that they are happy must come as a huge relief and joy. We hope this technology will improve and become widely available. What is more wonderfully human than the ability to communicate!
But what will be the response of advocates of the “right-to-die” movement? Remember Terri Schiavo? One shudders to think of what thoughts and pains she might have suffered as her irresponsible husband used some ‘law’ to make her starve to death, her loving parents tearfully watching, unable to stop the decision of the judge.
Give a spit to Renee Morad’s concluding line on Live Science, “These findings also suggest that evolution built the brain as a movement organization,” she says, appealing to the Darwinians’ proclivity for the power of suggestion. Apparently Birbaumer concurs. “Structure and thinking and feeling is a consequence and not a cause of specific behavioral acts,” he says. What?
This story has a lot to say about personhood. Even with no control of our body, we are still ‘there’ as persons with thoughts, emotions, and awareness of ourselves, others, and God.