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Waltraut Fähnrich is 70 years old, but she doesn’t look it. Her face looks young, almost girlish. Her skin is waxy; there is no sign of the wrinkles the faces of others of her age usually bear. But no one would say that Waltraut is spritely for her age. Although she doesn’t have pains in her knees or back, that’s because she is no longer able to do anything that might harm her joints. And her youthful complexion isn’t thanks to bracing country walks or a good workout program. It’s one of the typical symptoms of the illness she has: advanced-stage amyotrophic lateral sclerosis (ALS). Her brain no longer has any contact with her muscles, as its motor neurons have been irreversibly destroyed. This youthful-faced woman can no longer walk, dance, grasp, or eat. Indeed, she can’t even breathe without assistance. She is completely locked inside her own body.
How could anyone find anything about Waltraut’s condition pleasant? We instinctively feel horror at the thought of being locked-in ourselves, and, when we see others in that condition, we wish for their sake that their suffering will quickly come to an end. It is this fear of being fully conscious but trapped in their own body and unable to act on their own will that prompts many people to draw up an advance healthcare directive, or living will. Surveys carried out among the family members and doctors of ALS patients appear to confirm this view: 90–95 percent feel the patients’ lives are no longer worth living.
However, it is worth taking a closer look at the locked-in state. The surveys cited were carried out at a point in time when the ALS patients were still going through the painful experience of progressively losing possession of their own bodies. It is clear that patients despair in this phase. They see others moving normally through the world while they gradually lose access to it. Eating, playing sports, having sex, or dancing—they can no longer do any of the things they used to enjoy. Not to mention the fact that they lose all privacy because they require round-the-clock support from carers. Their lives become dominated by a painful and unstoppable loss.
But what about the period after that phase is over and they are completely locked in? Would they still answer ‘no’ when asked if their lives are worth living? The problem is how to elicit meaningful answers from someone in that stage of their illness. They can no longer speak or write, and gestures and facial expressions are also a thing of the past for them.
Signals out of the silence
If a brain can no longer trigger any muscle activity, then we must let it “speak” directly to us. Those were our thoughts in Tübingen when we decided to try to establish contact with locked-in patients using EEG — that is, by measuring their brainwaves. We found that they do not produce any high-frequency ripples, the brainwaves typical of the activity in the hippocampus. Instead, in a waking state, their brains produce waves with a frequency of 6–7 Hz, in the theta range.
Those are the slow waves we see in the “twilight state,” which we have already identified in connection with meditation and flotation tanks as playing an important part in producing a state of emptiness. This should not be surprising, since both mediation and floating share with the locked-in condition the fact that barely any sensory stimuli — especially from the proprioceptive sense of body awareness — are being processed in the brain. But there is also an important difference. We know that meditating and floating are generally experienced as positive, but both are situations that are entered into voluntarily and which can be ended at any time. The same is not true of the locked-in state. Patients are cast into that condition against their will, with no chance of ending it whenever they feel like it. Being locked-in is a fate over which there is no control.
So it is possible that in this state, emptiness is experienced as a senseless, grueling kind of hell. We felt this warranted further investigation. We had to carry on trying to establish contact with locked-in patients so they could tell us how they experience emptiness. We trained them in neuro-feedback techniques, to teach them to indicate a particular letter of the alphabet, or a “yes” or “no,” by deliberately generating certain brainwave patterns. Although this method is extremely successful with healthy subjects and with locked-in patients who are still able to move their eyes when we tried it with completely locked-in patients the results were demoralizing. We were unable to find any indication that such people were able to perceive anything consciously, let alone communicate.
However, EEG technology relies on sensors placed on the outside of the skull. That means, at quite a distance from the brain; not to mention the fact that the cranium does not by far conduct all currents. So then we tried with electrodes implanted directly in the brain. The patients’ families gave their consent to the operation since it gave them the hope of being able to communicate with their loved ones. Yet those results were also disappointing.
Next, we abandoned the idea of letting their brains speak via electrical impulses, and decided to try changes in blood flow as a means of communication, using near-infrared spectroscopy or other imaging technology to render them visible. The “communication advantage” of blood flow is that there are already receptors in the blood vessels of the brain that can sense it. The brain registers when blood flows through it at a higher or lower pressure. We aren’t able to put it into words, like describing something we’ve seen or heard, but we register it unconsciously.
For our first attempt, we chose a patient who was left completely locked in by ALS: Waltraut Fähnrich. We trained her to activate certain brain regions to indicate “yes” or “no.” She was not required to do this consciously, but simply to think “yes” or “no” in answer to our questions. The next step was to ask her specific questions about her wishes and her mental state. For example, whether she enjoyed visits from her children, or whether she was in pain. And she did indeed direct blood to the areas of her brain designated as meaning “yes” or “no.” She was certainly thinking something because there can be no changes in blood flow in the cerebral cortex without that happening.
But we did not know what she was thinking in order to generate those blood-flow changes. And, to be honest, we didn’t care: of all people, those condemned to complete immobility should have the right to free thought.
We then reversed the questions, asking them in the negative, so that Waltraut had to give the opposite answer to her previous responses. We did this to make sure the results were not due to pure coincidence. Our patient reacted correctly, changing “yes” to “no” and “no” to “yes.” Not always, but with a certainty of more than 70 percent over many days — far beyond the 50 percent chance of tossing a coin. When the question was about something that was important to her, she even answered consistently 100 percent of the time.
Pleasant moments get better, terrible moments lose their horror
Since then, we have successfully used neurofeedback training based on visualization technology to help other patients communicate. This usually begins with exposing patients to questions or statements whose answers or veracity are obvious to anyone: ‘Do elephants have trunks?,” “People have legs,” or “Is up the opposite of down?” We also deliberately use false or absurd questions and statements: “Columbus discovered Asia,” “Paris is the capital of Germany,” or “Elephants have feathers.” This enables us to determine how the patient’s yes/no thoughts are represented. The patient and the computer create a typical pattern for “yes” and “no” thoughts for that patient.
Later, we ask concrete questions whose answers we don’t know. Locked-in patients usually take 15 to 25 seconds to think of an answer. The result is then vocalized by a computer voice: “Your answer was recognized as ‘yes.’” Locked-in patients can now be questioned by their relatives using this BCI (brain-computer interface) technology. Waltraut Fähnrich has been using it to communicate with her husband for quite some time.
So, it is possible to communicate with completely locked-in patients. And thus we were also able to ask them about their subjective quality of life: “Are you pleased to see your children when they visit?” Or, more generally: “Are you happy, on the whole?” And eventually, the question of all questions: “Do you want to die?” Or, formulated the other way around: “Do you want to carry on living?” We have asked our patients these questions many times and made it clear to them that if they give a stable, repeated “no” in answer (“I do not want to carry on living”), they will be given help and we will act on a living will to that effect. Yet it appears that those who are locked-in and conscious of the fact that there is no hope of that situation changing are precisely the ones who are extremely attached to life.
Some critics pointed out that our locked-in patients may have only been pretending to love life so much in order to stay on our good side — after all, our machines and our method were their only remaining chance of communicating with their fellow human beings. So, we devised an experiment to measure their quality of life. We used magnetic resonance imaging because it can detect blood flow changes in the deeper, emotional areas of the brain. Patients were placed in an MRI scanner and confronted with images (for those who still had use of their eyes) or sequences of sounds (for those who could only hear) that aimed to provoke positive or negative emotions in them.
The MRI scans showed that the severely locked-in patients had a more pronounced reaction to positive stimuli and a less pronounced reaction to negative stimuli than the healthy control group. And those response patterns were stronger, the more advanced a patient’s illness was. Thus, there was no sign that these severely disabled people with highly limited means of perception were able to react only scarcely to their environment. Contrariwise, there was also no indication that their lives are so extremely uneventful that they were more intensely shocked by negative stimuli than their healthy peers.
Rather, that which makes us happy made these people even happier, and that which makes us unhappy affected them much less. Ultimately, the conclusion must be that their quality of life is higher than ours. Of depression or resignation, not a sign.
