Around six years have now passed since Waltraut Faehnrich last opened and closed her eyes without assistance.
In May 2007 Faehnrich, now in her seventies, was diagnosed with amyotrophic lateral sclerosis or ALS, an incurable disease which affects the brain and spinal cord, gradually attacking the nerves which control movement until the patient becomes totally paralysed.
No one has known what she’s thinking. Until now
“In February, Waltraut bent down in the car park to pick up a two euro coin, and she couldn’t get back up again,” her husband Joachim remembers. “Three months later we found she had ALS. It was a hammer blow.” By September Faehnrich‘s respiratory system had failed. “I walked through the hospital with tears in my eyes that day,” Joachim says. “I could not understand how things had happened so quickly. Just a few months earlier we would take walks in the forest without a care in the world.”
In 2010, doctors diagnosed Faehnrich as being completely locked-in, the state she remains in today.
Many have attempted to reach the minds of locked-in patients, but nobody has achieved it (Credit: iStock)
Faehnrich is fully conscious. She can feel everything from whether her room is too hot or too cold, to the pain of lying in the same place for so long. She can hear conversations. But her mind is completely encased in an almost lifeless body. No one has known what she’s thinking. Until now.
Niels Birbaumer, a neuroscientist at the University of Tubingen, has spent almost his entire scientific career searching for a way of communicating with the locked-in – and now he believes he may have found a way.
So far, scientists have had success using imaging techniques such as fMRI to detect whether locked-in or vegetative patients are still consciously aware. By training the patients to produce different patterns of neural activity to correspond to “yes” and “no”, Adrian Owen at the University of Western Ontario, Canada, opened a line of communication, allowing them to answer simple questions about their past.
But fMRI is somewhat bulky and extremely expensive to use – costing hundreds of pounds per hour of use – so Birbaumer and colleagues have been investigating a different technique: near-infrared spectroscopy, which measure metabolic changes, monitoring the blood flow.
It's unclear whether locked-in patients have an active mind or are in a deep state close to sleep (Credit: iStock)
The patterns of flow were different depending on whether the patient was thinking ‘yes’ or ‘no’
Since the 1980s, NIRS has been used to pinpoint areas of the brain associated with cognitive functions such as motor control and language. More recently it has been applied to study the processes behind Alzheimer’s disease. The units are small enough that they can be wheeled into a patient’s bedside.
Birbaumer found that the patterns of blood flow in the brains of locked-in patients were different depending on whether they were thinking ‘yes’ or ‘no.’
He designed a brain-computer interface (BCI) to ask Faehnrich hundreds of test questions in her husband’s voice, based on facts he knew she would know.
‘Is London the capital city of England?’
‘Is Paris the capital city of Germany?’
‘Is your name Waltraut?’
The computer would simultaneously scan her brain’s metabolic activity, and 25 seconds later return an answer. Slowly he began to get the responses he was hoping for.
There are millions of processes happening simultaneously and I have to extract this one simple thought - Niels Birbaumer, researcher
“Because the answers to these questions are in your memory, thinking ‘yes’ or ‘no’ occurs like a reflex,” he explains. “It happens automatically and doesn’t require strong willpower. The computer can also monitor whether she’s asleep or not. When you’re in that state you slip in and out of consciousness all the time as you have nothing to do.”
Birbaumer needed to be certain he was definitely reading Faehnrich’s mind, not an easy task given the noisiness of the brain. “It’s tricky,” he agrees. “While the patient is thinking their answer, there are millions of processes happening simultaneously and I have to extract this one simple thought.”
Remote monitoring of body processes and brain activity is the only route into the mind of a locked-in patient (Credit: iStock)
He set the computer to ask each of the test questions multiple times. Each response was only recorded when it perceived that Faehnrich had given the same answer at least 70% of the time. “The patient has to get used to the system but you can gradually be sure you’re obtaining safe information. I ask her whether she’s at home and most of the time the computer tells me ‘yes’.”
Satisfied, he moved on to more serious questions:
‘Are you in pain?’
‘Do you want to see your husband?’
‘Do you want to live?’
After four decades together, her husband remains utterly devoted to his wife. They go on holiday, and to concerts
Like all completely locked-in patients, Faehnrich is artificially ventilated and fed through tubes. Doctors believe she no longer has the ability to feel taste. But after four decades together, her husband remains utterly devoted to his wife. They go on holiday. Every time their favourite singer Helene Fischer performs in their hometown of Hamburg, Faehnrich is in the audience, propped up in her wheelchair.
“There’s always one question which predicts whether patients in this condition want to die or not,” Birbaumer says.”
‘Do you think you are a burden to your family and to the world?’
“If the answer is ‘yes,’ then they never want to go on artificial respiration and they die. 90% of these patients answer ‘yes.’ The ones who continue living always have a very positive family environment. Continuing to feel loved and experiencing positive emotions makes a big difference.”
According to the tests, Faehnrich desires to live. “She still has a quality of life,” Joachim says. “Our relationship remains very strong.”
The downside is that they are only able to communicate once every three months, when Birbaumer and his colleagues visit their home. Faehnrich’s husband would like to purchase a brain-computer interface for daily use, but the cost of the machinery is 50,000 euros, and his health insurance does not cover it.
Brain scans have been used to monitor activity, but it's not two-way communication (Credit: iStock)
As well as Faehnrich, Birbaumer has five other patients. He hopes that one day his research can be used to establish communication with all completely paralysed individuals.
It’s early days, and there’s no telling whether the technique will prove robust enough to work reliably in other individuals. When he and his colleagues published their initial study, other researchers cautioned that because Faehnrich’s answers to true and false statements were sometimes inconsistent, confirming communication may prove difficult.
There are also ethical quandaries, particularly concerning the emotional and cognitive capacities of many paralysed patients to make complex decisions regarding life or death. Birbaumer has found that their brain waves, even while awake, are around 5Hz, frequencies usually seen in healthy people during light sleep. It suggests that the long-term effect of complete paralysis is to send the patient into a state resembling deep relaxation.
Their ability to express their true feelings about their quality of life may be impaired, and open to interpretation – Walter Glannon, ethicist
"While locked-in patients are fully conscious, and will definitely benefit from being able to clearly express their wishes about care, there are other patients who are minimally conscious," says Walter Glannon, a researcher in biomedical ethics at the University of Calgary. "Although it may be possible to train some of them to use a BCI, their ability to express their true feelings about their quality of life may be impaired, and open to interpretation from doctors and caregivers. This is more dangerous ground, as decisions regarding the continuation of artificial hydration and nutrition may be influenced by the wishes and perceptions of external parties."
Birbaumer hopes to eventually create a system which allows more advanced conversations with locked-in patients. “At the moment our computer can detect whether they’re thinking ‘yes’ or ‘no’ with around 70% accuracy,” he says.
“If we can get this to 80% then it may be possible to use the brain response to select letters. But this is for the future. For now we need to develop a system that can be easily and reliably operated by the patient’s families so they can communicate on a daily basis without needing my team present. Then I will be happy. My work will be done and I can die myself.”
If you liked this story, sign up for the weekly bbc.com features newsletter, called “If You Only Read 6 Things This Week”. A handpicked selection of stories from BBC Future, Earth, Culture, Capital, Travel and Autos, delivered to your inbox every Friday.