Locked in the body: What actually happens to people "in a coma"
Every year, hundreds of thousands of people fall into a coma.. Tens of thousands of them end up alive, but for a long time find themselves in a vegetative state, as if hanging between life and death. Scientists have been trying for decades to find out if these people feel something and how they can be helped. We describe how the study of "borderline conditions" and why some patients are "locked" in their own body.
Julia Dudkina
Friendship in the "gray zone"
On December 20, 1999, Scott Ruthley visited his grandfather in the Canadian province of Ontario. Scott was twenty-six years old; he studied physics at the University of Waterloo and showed great promise. In the future, he was going to be engaged in robotics.
When Scott was driving home, there was a crime a few blocks from the grandfather's house and the police immediately left for the police. At one of the crossroads, Scott's car collided with a police car that was driving at high speed. The main blow fell on the driver's side. Scott received serious brain damage and, being in the hospital, spent several hours in a deep coma. He never came to himself - when some functions of the body were restored, from a coma Scott switched to a vegetative state and spent there the next twelve years. At least, the doctors thought so.
The vegetative state is what many mistakenly call a "long coma." In this state, patients can open their eyes, react to stimuli, fall asleep and wake up. But they lack what we call consciousness. Patients are not able to perform targeted actions, only reflective. It is about people in a vegetative state that some people scornfully say “vegetable”.
When Scott got into an accident that almost cost him his life, his parents - Jim and Ann - left work and devoted all their time to making his existence as worthy and enjoyable as possible. They came to his ward, talked to him and made sure that he always turned on the TV. They were sure - their son continues to feel and understand something. They tried to convince the doctors, and argued that when Scott hears the music from the film The Phantom of the Opera, his face changes and his fingers move.
Such statements from relatives of people in a vegetative state are not uncommon. Often, people take what they want for reality - they convince themselves that their loved one gives them signs, wiggles or smiles slightly. On the one hand, usually these "signs" are just self-deception of desperate people. On the other hand, unlike doctors, relatives know the affected patients all their lives and better distinguish their facial expressions. Sometimes they can really catch the change, invisible to outsiders. In addition, Scott's parents were constantly in his room and could catch what the forever busy doctors missed.
In the end, the hospital staff decided to turn to Adrian Owen, a neurobiologist who manages the brain injury and neurodegenerative diseases laboratory at the University of Western Ontario. Since 1997, Owen has been studying people in a vegetative state and tried to determine which of them is really completely unconscious and who is locked in his own body, but continues to hear and understand what is happening around. “When I first saw Scott, I thought he was really in a vegetative state,” Owen later recalled. “I didn’t think he moved his fingers or changed his expression. But, after consulting with a colleague, I decided to check Scott using fMRI ".
In a vegetative state, patients can open their eyes, react to stimuli, fall asleep and wake up. But they lack what we call consciousness.
fMRI - functional magnetic resonance imaging - a technology that allows you to detect brain activity. When an area is activated, more oxygenated blood immediately begins to flow into it. A special scanner helps determine where exactly the activity takes place. In the mid-2000s, Adrian Owen and his colleagues began using fMRI to check if there is consciousness in patients in a vegetative state. They alternately suggested that such patients imagine that they play tennis or go to their own home. If patients understood the words of doctors and fulfilled requests, they activated different parts of the brain. So scientists managed to establish contact with those who were locked in his body, but retained mental abilities.
Not all researchers approve of this method. According to the British neurophysiologist and clinician Parashkeva Nachev, the fact that the patient can “mentally” answer the question does not mean that he is conscious. For such conclusions, so far there is not enough data - even the very concept of "consciousness" has not been studied enough. Nevertheless, fMRI is one of the few ways to establish at least some kind of communication with those who are in a vegetative state, but, presumably, can communicate with the outside world.
Before Adrian Owen began testing Scott using the mFFT, he doubted the experiment would show any results. “I worked for years with patients in the gray zone between life and death,” the scientist explained. “And I found myself in an awkward position many times. I had to disappoint relatives who were sure that the patient was showing signs of life. Scott, I was especially touched by the behavior of his parents. For how long they did not lose hope and continued to create the most comfortable conditions for their son, believing that he understands everything. "
On that day, when Owen decided to check whether Scott was conscious, the BBC film crew came to the hospital to shoot a documentary about the scientist’s research. The camcorders documented that moment when Owen addressed the patient: "Scott, please imagine that you are playing tennis."
“I'm still worried when I think about this moment,” Owen said. “Colored spots began to light up on the screen. Scott heard us. His premotor crust became more active - he imagined how he was playing tennis.” After that, the scientist asked Scott to imagine that he was walking through his own house. And again on the screen of the device there were changes - the para-hippocampal gyrus activated. The one in which a person captures spatial information.
“Scott's parents were right. He knew what was going on around him and could answer questions,” Owen wrote about it. “Now I had to ask him the next question. My colleague and I looked at each other — we both understood what we had to ask. it was necessary to find out if Scott was in pain. But we were afraid of an answer. What if it turned out that he had spent twelve years in agony? What would have happened to his parents? It was even worse that the BBC film crew was watching.
Due to the fact that people could be declared dead before the death of the brain, strange incidents happened. Patients might suddenly recover after a cardiac arrest.
Owen approached Scott's parents and warned: "We would like to ask your son if he is in pain. But we can do this only with your permission." Scott's mother replied, "Good. Ask." According to Owen, the atmosphere at that moment was electrified. Everyone who was present at the experiment, held their breath. “Everyone understood that Scott’s life could now change forever,” Owen wrote. “And at the same time, the whole science of the border states between life and death. For the first time, we didn’t just conduct an experiment, but decided to ask a question that could affect the patient’s condition. It was a new page in the study of the "gray zone". "
Having plucked up courage, the scientist asked: "Scott, do you hurt? Do you have any unpleasant feelings in your body? If not, imagine that you play tennis." Turning to the film crew, Owen pointed to the device screen, where a three-dimensional image of the patient's brain was displayed. He pointed to one of the areas: "See, if Owen answers that he doesn’t hurt, we’ll see it here." At that moment, where he pointed with his finger, a color spot appeared. Scott heard the question and answered. And most importantly - he said no. It did not hurt.
After this experiment, Owen talked to the patient many times with fMRI. As the scientist admitted, both Scott’s and his parents had the feeling that the young man had come back to life. As if the doctors managed to stretch the bridge between the two worlds. “After that, we asked him if he liked hockey on TV or if we should switch the channel,” wrote Owen. “Fortunately, Scott replied that he likes hockey. We also tried to understand what was in his memory - does he know about the accident that happened to him, whether he remembered something about life before the catastrophe. It turned out that Scott knew what year it was and how long the accident happened. He remembered his name and knew where he was. This connection with Scott was a real breakthrough - we learned a lot more about patients who are in the „gray zones "".
Still, Scott Ruthley never fully recovered. For several months he communicated with researchers using fMRI, and then, in 2013, he died due to infections. When a person suffers serious damage, his immunity suffers greatly. And if the patient is also unable to move and is in the hospital, he is exposed to numerous viruses and bacteria. “When Scott was gone, our entire team of researchers was shocked,” Owen said. “Yes, we did not know him as a mobile young man, a student. We met him when he was already in borderline condition. But it seemed to us that we were we managed to get closer to him, our destinies seemed to be intertwined. For the first time in our life, we became friends with a person “in the gray zone”. "
"Locked Man Syndrome"
Scott got into an accident in 1999, and scientists could only communicate with him at the end of 2012. The fact is that twenty years ago such an experiment would have been impossible. The "locked man syndrome" - when the patient is helpless, but is conscious - began to be studied relatively recently. One of the reasons is the noticeable progress in medicine.
Fifty years ago, defibrillation was performed mainly with medication and not always. If a person's heart stopped, they could immediately recognize him as dead and send him to the morgue. At the same time, the patient's brain could still remain alive - cell death in the cerebral cortex begins only three minutes after the cessation of breathing. However, even if a part of the cells had time to die, a person can still be brought back to life - although it is quite possible that he can remain forever in a vegetative state.
Due to the fact that people could be declared dead before the death of the brain, strange incidents happened. Patients might suddenly recover after a cardiac arrest. Probably, legends came from here that some people were buried alive. Some people still suffer from tafophobia (fear of being buried alive) and ask to bury them so that in case of a sudden awakening they can get out of the grave or crypt.
In the 1950s, doctors began to use electric defibrillators — now the human heart could be “restarted”, and this was done quite often. In addition, in the 1950s, the world's first pulmonary ventilator appeared in Denmark. From that moment on, the very concepts of life and death became rather vague. Intensive care units appeared in hospitals all over the world, where there were people whose life was supported by various devices. Between life and death, a "gray zone" appeared, and over time it became clear that it was heterogeneous.
“Once it was thought that a person died if his heart stopped,” says Adrian Owen. “But if an artificial heart was transplanted to a patient, can we consider it dead? Another possible parameter is the ability to maintain one’s own life activity. But then the person connected to a ventilator, dead? And a baby a few days before its birth - is dead? " Answers to all these questions are difficult to give, Owen said. It is not even clear who should give them - doctors, philosophers or priests.
Meanwhile, in Europe alone, about two hundred thirty thousand people each year fall into a coma. Of these, thirty thousand people for a long time or forever remain in a vegetative state. And if one of them is not at all able to respond to the influence of the outside world, then someone is aware of everything that is happening. If doctors learn to accurately determine whether a person has preserved consciousness with brain damage, and if so, to what extent it can change a lot. Relatives will understand whether a person needs a TV turned on and special care, or he still does not understand anything. It will be easier for them to decide whether they need to turn off life support devices. Do I need to throw the power of doctors to try to bring a person out of a vegetative state, or his mental abilities are lost forever. On the other hand, it will cause many new questions. For example, does a person want to be taken out of a vegetative state if he remains paralyzed forever? If consciousness is still present in a person, is it not too depressed so that his subsequent life can be called full-fledged? And in the end, what is considered a consciousness?
The choice between death and low quality of life is another ethical dilemma that confronts scientists working with the "gray zone"
In order to somehow streamline the concepts associated with the “gray zone,” in the 1960s, neurologist Fred Plum and neurosurgeon Brian Jennet developed the Glasgow coma scale, which they suggested estimating the depth of the coma. They proceeded from three parameters: how much a person is able to open his eyes, whether his speech and motor reactions are preserved. The scale assessed the patient's condition in points from 3 to 15, where 3 is a deep coma, and 15 is a normal condition in which the patient is conscious. It was Fred Plum who first used the term "locked man syndrome", referring to those who are conscious but cannot communicate with the outside world. True, although scientists suspected the existence of such people, for a long time they could not get in touch with them.
A breakthrough in this area happened in the 90s - for the first time scientists were able to detect a patient locked in her own body and establish a semblance of communication with her. School teacher Kate Bainbridge in 1997 fell into a coma due to inflammation that began in her brain as a complication of a viral infection. A few weeks later, when the inflammation subsided, it went into a vegetative state. Her intensive care physician, David Menon, collaborated with Adrian Owen, who was already a well-known borderline specialist by that time. With the help of positron emission tomography, doctors discovered that Kate reacted to people's faces, and her brain reactions were the same as those of ordinary people.
If before people who found themselves in a vegetative state were considered hopeless and the doctors lowered their hands, after this experiment, the doctors resumed the treatment and did not stop it for six months. When Kate finally came to her senses, she said that she really saw and felt everything. According to her, she was constantly in thirst, but she could not tell anyone about it. She spoke of medical procedures as a nightmare: the nurses, thinking that the patient did not understand, did the manipulation in silence with her, and she did not know what they were doing and why. She tried to cry, but the clinic staff was sure that her tears were just a body reflex. Several times she tried to commit suicide and for this she stopped breathing. But nothing happened to her.
When Kate completely recovered, she was grateful to those who helped her "wake up." But it was difficult to call her new life happy: while she was in a vegetative state, she lost her job. After being discharged from the hospital, she moved in with her parents and was forced to move in a wheelchair — some functions of her body never regained.
The choice between death and a low quality of life is another ethical dilemma that confronts scientists working with the gray zone. No one asked Kate if she even wanted to be saved from death. Nobody warned her that she would forever lose the ability to move independently. When she was on the verge of death, she was placed in the intensive care unit without asking whether she was ready to be locked in her body for six months. But these ethical issues are only to be resolved by the medical profession. Then, in the 90s, Adrian Owen and his colleagues were so inspired by Keith's "awakening" that they took up further experiments with even more enthusiasm and soon came up with an experience with tennis and an apartment - it was he who later helped to establish contact with Scott Routley.
Light communication
Иногда исследования "серой зоны" оказываются серьёзно скомпрометированы: тема жизни и смерти так волнует людей, что они идут на сознательные и бессознательные манипуляции. Один из самых известных случаев - история Рома Хоубена - бельгийского инженера, который провёл двадцать три года в вегетативном состоянии после серьёзной автомобильной аварии.
For several years, doctors evaluated his condition on the Glasgow scale, but did not notice that he was getting better and that his body movements became any meaningful. But in 2006, neurologist Steven Loreis - another well-known specialist in borderline conditions - conducted a study of his brain and saw clear signs of consciousness in him. Loreis suggested: perhaps the case of Houben is not hopeless and he is really able to understand what is happening around him.
From this point on, distortions of facts and manipulations by relatives and the media began. Many believe that if a person is conscious, then he can control his muscles. In 2009, Houben’s mother stated that her son began to move his leg and could use these movements to answer “yes” and “no” to her questions. After that, the patient began to give an "interview". He was invited to a specialist in "light communication" - a controversial method in which a special "translator" helps the patient to press the keys or point to the letter. Proponents of this method and the “translators” themselves declare that they pick up in which direction the patient is trying to direct an arm or leg, and “help” him to reach out. Opponents of the method claim that the "translators" only wishful thinking.
It turned out that the mental activity of a person in a vegetative state can not only be fixed, but also improved.
With the help of the "translator", Houben spoke to the press. "I screamed, but no one could hear me," was his first sentence. Or the phrase that his "translator" came up with. Then he told the press that during his imprisonment he meditated in his own body and "traveled with thoughts to the past and the future."
Loreis himself was at first inclined to believe that the patient communicated with him using the "light communication" method. To all skeptics, he said that he has good reason to think that Houben really communicates with him. But later, he still decided to double-check everything again. The patient was shown fifteen different words and objects. His "translator" was not in the room. Then he was asked to print the names of the objects he saw with her. He failed once. Loreis had to admit: "light communication" confused him. It turned out just brutal manipulation.
But this does not mean that Houben was not really locked in his own body. “The media could not adequately react to this situation,” Lorais explains many years later. “The journalists wanted to create a sensation, and they did not want to wait for more reliable research results.”
Yet, according to Loreis, Houben became an important patient for him. Thanks to this incident, the scientist began using a brain scanner to check all Belgian patients in a vegetative state, and found that 30 to 40% of them are partially or completely conscious.
Awakening to life
In 2016, a tear leaked from a thirty-four-year-old patient in a hospital in Lyon. This was recorded by an infrared camera in his room, and soon the video was watched with excitement by several doctors. Prior to this, a man of fifteen years was in a vegetative state. He was not locked in his own body and showed no signs of consciousness.
Two weeks before he shed a tear, a device for electrostimulation of the vagus nerve, the paired nerve, which descends from the head to the abdominal cavity, was implanted into his chest. It transmits to the brain impulses associated with sensations on the skin, in the throat and in some parts of the gastrointestinal tract. Electrical stimulation of the vagus nerve is used as an auxiliary method for the treatment of epilepsy and depression. Almost immediately after the stimulation began, the patient's mother began to say that his face had changed. Two weeks later, his favorite music was turned on in the ward, and at that moment that same tear appeared.
Later, other changes followed in the patient's behavior. If initially he was in a uniquely vegetative state, now doctors believe that he is in a state of minimal consciousness. He learned to follow the eyes of moving objects and perform basic requests.
“Once we asked him to look at us,” says the experiment's author, Angela Sirigu. “It took him a whole minute to cope, but still he managed to turn his head.” It used to be that if a person was in a vegetative state for more than twelve months, then a return to consciousness is practically impossible. Now it turned out that the mental activity of a person in a vegetative state can not only be fixed, but also improved.
The results of this study were published in the journal Current Biology. Today, Sirigu and her colleagues, perhaps, have made the farthest progress in the study of borderline conditions - thanks to them, it became clear that in the future doctors will be able to restore the "lost" consciousness of patients. This is a new chapter in research that was started by Flame, Jennett, Owen and Loreis.
This study once again calls into question the very concepts of coma, vegetative state and consciousness. Is it possible to forcibly remove a person from a vegetative state? What form of consent can be developed for such cases? Can relatives solve such questions for a person who is unconscious? Before hospitals around the world begin to “revive” people, scientists, philosophers and politicians will have to answer all these questions.
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