Tens of thousands of people around the world are trapped in the vegetative state every year and, as you read this, continue to be there - between life and death. Three scientists are working to free them.
“Imagine waking up trapped inside a case,” says Adrian Owen. - It fits perfectly all the way to your fingertips. This is a strange case, because you can hear absolutely everything that is happening around you, but your voice cannot be heard. The fact is that the case fits your face and lips so tightly that it makes it impossible to speak or make sounds.
At first it all looks like a game. Then you realize that this is serious, this is reality. You see and hear how your loved ones mourn your fate. You are too cold. Then it's too hot. You are constantly thirsty. Friends and family visits are becoming less frequent. Your husband (or wife) already has a life of his own. And there's nothing you can do about all this."
Owen and I are on Skype. I am sitting in London, in Great Britain, and he is in another London, three and a half thousand miles away, at the University of Western Ontario, Canada. Owen's reddish hair and short-cropped beard loom large on my screen as he emotionally describes the suffering of those who can't tell themselves - his patients.
People in a vegetative state are conscious, but not aware of it. Their eyes are open and their gaze sometimes wanders. They are able to smile, squeeze someone else's hand, cry, moan. But they do not respond to clapping their hands, are unable to see and do not understand the speech addressed to them. Their movements are not conscious, but reflective. It seems that they have lost memories, emotions and aspirations - those qualities that make each of us an individual. Their consciousness is tightly closed. Nevertheless, when you see their open eyes with quivering eyelids, do you really want to understand that this is a glimpse of consciousness?
Ten years ago, the answer would have been a stern and emphatic no. Everything has changed today. Using brain scanners, Owen found that while some are trapped inside their bodies, they do not lose their ability to think and feel to one degree or another. Ironically, in recent decades, the number of patients with impaired consciousness has increased primarily due to the fact that doctors' ability to rescue patients with previously incompatible injuries has steadily expanded.
Today, those who are trapped in their own immobile body, having completely or partially lost the ability to think, become residents of clinics and private hospitals around the world - in Europe alone, the number of new cases of coma, according to some estimates, is about 230 thousand per year, of which about 30 thousand people will no longer come out of the vegetative state. Such people can be called a kind of artifacts of modern intensive care - both tragic and expensive to maintain.
“The doctors said that I did not feel pain. They were very wrong"
Promotional video:
Kate Bainbridge, patient rescued from her own body trap
Owen knows all this too well. In 1997, his close friend cycled to work as usual. Anna (not her real name) had a weakened area on a cerebral blood vessel (cerebral aneurysm). Five minutes after the start of the trip, the vessel burst, and the girl crashed into a tree. Since then, she has not regained consciousness and is in this state to this day.
The tragedy shocked Owen, but at the same time, the accident with Anna determined what he would do next in life. He wondered if there was a way to determine which of these patients was in an unconscious, comatose state, who was conscious, and who was somewhere in between.
In the same 1997, he moved to work in the branch of the British Council for Medical Research in Cambridge, which deals with the study of brain activity and where already then researchers used various scanning methods.
For example, positron emission tomography (PET) is used to study various metabolic processes in the brain. Functional magnetic resonance imaging (MRI) can help detect the weakest impulses of blood flow in the working brain, allowing you to identify centers of activity. Owen wondered if these techniques could be used to connect with patients who, like his girlfriend, are stuck in the gray zone between sensation and forgetfulness.
Conscious decision
Half a century ago, if your heart stopped beating, you would be declared dead - even if you were fully conscious, the doctor would send you to the morgue. This, in all likelihood, can explain the numerous high-profile stories about "resurrected from the dead." Why, half a century ago - just recently, in 2011, the local council of the Malatya province in central Turkey announced that it had built a morgue with a warning system and refrigerators whose doors can be opened from the inside.
Being trapped in your own body and unable to inform your loved ones about it is scary
The problem is that the scientific definition of death, as well as the definition of consciousness, has not been found. Being alive is no longer about having a beating human heart, Owen explains. For example, if I have an artificial heart, does that mean that I am dead?
The question becomes even more confusing if we think about everyone who got into the twilight worlds between normal life and death: from those whose glimpses of consciousness are replaced by its darkening, who ended up in a "minimally conscious state", to those whose health was inflicted severe damage and they are in a vegetative state or coma.
In the 1960s, neuroscientist Fred Plum of New York and neurosurgeon Brian Jennett of Glasgow conducted groundbreaking research trying to understand and classify impaired consciousness.
"Even today we still debate who is conscious and who is not."
Plum coined the term "locked-in person syndrome", in which the patient is conscious and understands everything, but cannot move or speak. Jennett worked with Plum to develop the Glasgow Coma Scale for assessing coma depth, and then supplemented it with the Glasgow Outcome Scale, which allows us to weigh the chances of recovery and give a prognosis - from death to mild disability.
Together they coined the term "persistent vegetative state" to describe the condition of patients who, they wrote, "have periods of wakefulness when their eyes are open and moving; their responsiveness is limited to primitive postural (related to body position) and reflex limb movements, and they never speak."
In 2002, Jennett was part of a group of neurologists who used the term “apallic syndrome” (“waking coma”) to describe those who sometimes wake up and are partially conscious, who show erratic signs of consciousness, being able to follow simple instructions, but not at other times.
However, even today we are still debating who is conscious and who is not.
Rescue Scan
Kate Bainbridge, a 26-year-old schoolteacher, fell into a coma three days after she came down with an acute respiratory illness. Her brain, as well as an area in the upper part of the spinal cord (brain stem), became inflamed. A few weeks after the infection cleared, Kate came out of her coma, but her condition was diagnosed as vegetative.
Until now, scientists cannot agree on how to determine whether a person is conscious or not.
Fortunately, David Menon, the physician in charge of her in the intensive care unit, headed the laboratory at the newly opened Brain Imaging Center. Wolfson in Cambridge, where Adrian Owen also worked at the time.
In 1997, four months after being diagnosed with a vegetative state, Kate became the first patient of her kind to be studied by the Cambridge group. The results, published in 1998, were unexpected and even extraordinary. Not only did Kate react to faces; her brain responses were indistinguishable from those of healthy volunteers.
The scan results showed a burst of brain activity in the back of her brain, called the fusiform gyrus, which helps her recognize faces. Kate became the first patient to have a complex brain imaging (in this case, PET) showing "latent cognitive function." Of course, the subject of discussion at that time was the question of what exactly such a response was - a reflex or a signal of consciousness.
The results were of great importance not only for science, but also for Kate herself and her parents. “Evidence of surviving cognitive processes removed the nihilistic approach that had been extended to such patients in general from the agenda and supported the decision to continue with aggressive treatment of Kate,” recalls Menon.
In the end, six months after the initial diagnosis, Kate overcame the ordeal. “The doctors said I didn't feel pain,” she says. "They were very wrong." Sometimes she cried, but the nurses thought it was just a reflex. She felt abandoned and helpless. The hospital staff had no idea how she suffered from their actions.
"Looks like my body didn't want to die."
Kate Bainbridge
Kate was terribly afraid of physical therapy: the nurses never explained what they were doing to her. She was horrified when they pumped mucus from her lungs. “I can't tell you how scary it was, especially the suction through the mouth,” she writes.
At some point, the pain and despair accumulated so much that she tried to die, holding her breath. “I couldn't get my nose to stop breathing, so it didn't work. Looks like my body didn't want to die."
Kate says that her recovery didn't feel like turning on the lights, but more like a gradual awakening. It took five months before she could smile. By that time, she had lost her job, lost her sense of smell and taste, as well as much of what was needed for a normal future.
Now reunited with her parents, Kate is still practically incapacitated and needs a wheelchair. 12 years after her illness, she began to speak again. And although the girl is still angry with the hospital staff for the way she was treated in that condition, she is grateful to all those who helped her consciousness escape from the trap.
Shouldn't we play tennis?
In the 1990s, doctors were convinced that no patient in a constant vegetative state was conscious. And it doesn't matter that when looking at this or that image, the patient's brain became active, some of them, especially skeptical, pointed out, - after all, a similar result can be achieved from a monkey under anesthesia,
Brain scans have already helped some patients
Based on previous medical experience, the brain, deprived of oxygen as a result of a heart attack or stroke, was unlikely to be able to recover at all, if this did not happen during the first few months. Such patients faced a fate that, in the opinion of many people, was worse than death itself: they became, in fact, the living dead. Doctors with the best intentions considered it perfectly acceptable to end the life of a "plant patient" by depriving him of food and water. This was the era that Stephen Loris of the Liege laboratory, which studies people in this state, calls "therapeutic nihilism."
Owen, Loris, and Nicholas Schiff (Weill College of Medicine, Cornell University, USA) have proposed a rethinking of the approach to a range of vegetative patients. Some of them could even be classified as fully conscious, but "trapped inside." However, the scientific establishment stubbornly opposed this. “The hostility we have faced goes far beyond mere skepticism,” says Schiff. Looking back, Loris pauses and smiles almost imperceptibly: "Doctors do not like being told that they are wrong."
"I just had a premonition"
Adrian Owen
Then came 2006. Owen and Loris tried hard to find a reliable way to communicate with vegetative patients, among whom was Gillian (not his real name). In July 2005, this 23-year-old girl was crossing the road while chatting on her cell phone. She was hit by two cars.
Five months later, an astonishing case of intuitive serendipity allowed Gillian to "get out of the case." “I just had a hunch,” says Owen. - I asked a healthy patient to imagine how she plays tennis. Then I asked her to imagine walking through the rooms of her house."
Mentally visualizing a game of tennis activates a part of the brain called the accessory motor zone, which is involved in the mental simulation of movement. But visualizing walking around the house activates the parahippocampal gyrus, which runs through the brain nucleus, the posterior parietal lobe, and the lateral premotor cortex.
The two patterns of activity differ from each other as much as yes and no. So if you ask a person to imagine playing tennis as "yes" and walking around the house as "no", then he is able to answer questions using MRI.
Peering into Gillian's “vegetative” brain with a scanner, Owen asked her to imagine the same - and saw patterns of activity that were strikingly similar to those of healthy volunteers. It was the moment of truth. Owen could read her mind.
Gillian's case, published in Science magazine in 2006, went to the front pages of newspapers around the world. The result caused surprise and, of course, disbelief. “Without going into details, I received two kinds of emails from my colleagues,” says Owen. “They either wrote 'This is amazing, well done!' Or 'How can you say that this woman is conscious?'
In general, extraordinary claims required no less extraordinary evidence.
Trust but verify
Parashkev Nachev, currently a neurophysiologist-clinician at University College London, says he objected to Owen's 2006 report, not because it was implausible or lacking in statistical analysis, but because it was "wrong." Although the conscious brain triggers a particular pattern of activity during visualization, this does not necessarily mean that a similar pattern of activity indicates the presence of consciousness.
The diagnosis of "vegetative state" is sometimes wrong
According to Nachev, the same area of the brain can be activated under a variety of other circumstances, with or without a correlation of consciousness. Moreover, he argues that in reality Gillian was not offered a real choice of visualizing the tennis game. Just as a lack of response can be related to an inability to respond or a decision not to cooperate, a direct response to a simple instruction can be a deliberate decision or nothing more than a reflex.
Need to philosophize less and rely more on data, says Owen.
A follow-up study, published by Owen, Loris and colleagues in 2010, tested 54 patients clinically diagnosed with vegetative or minimally conscious states. Five patients reacted the same way as Gillian. Four of them on admission were presumably in a vegetative state. Owen, Schiff, and Loris have worked out alternative explanations for what they observed and acknowledged, for example, that the activation of the brain regions they study when they ask patients questions may be different.
But a report published in 2010 rules out such automatic behaviors as an explanation. It states that activation persists too long to indicate anything other than intention.
Owen is grateful to his critics. They, for example, encouraged him to develop a method for asking patients questions, the answer to which is known only to them. “You can't communicate unconsciously - it's just impossible,” he says. “And we won that argument.”
Since Owen published a 2006 report in the journal Science, studies in Belgium, the United Kingdom, the United States and Canada have shown that a significant proportion of patients who have been classified as vegetative in recent years have been diagnosed in error.
"We must give all patients the best chance of getting an accurate diagnosis in order to provide them with proper care."
Adrian Owen.
Owen estimates that the potential for misdiagnosis is about 20%. Schiff, who uses a different method to estimate the number of such diagnoses, goes even further. According to him, based on the results of recent studies, about 40% of patients whose condition is considered vegetative, with a more thorough examination, are partially awake.
Among this group of patients, ostensibly in a vegetative state, there are those who, as shown by the scanners, are able to communicate and should be diagnosed as "trapped inside" if they are fully conscious, or as being in a "minimally conscious state". if their capabilities increase and decrease.
In 2009, Loris's team asked one of the 54 patients they and Owen studied in the original group - patient number 23 - a series of questions, the answers to which were yes and no. It was a completely ordinary task: to answer "yes", the patient had to imagine playing tennis, "no" - walking around his house.
The patient, who had been in a vegetative state for five years, was able to answer five out of six questions about his previous life - and all the answers were correct. Was he, while on vacation, in a certain place? Was his father called so and so? According to Loris, it was an extremely exciting moment.
Since Nachev first criticized Owen's work, he hasn't changed his mind, substantiating his concerns in a detailed article published in 2010. “I think this whole media circus around the problem is pretty vulgar,” he told me. “The relatives of the sick are under constant stress without it.”
Owen strongly believes that doctors have a moral responsibility to make a correct diagnosis, even if the results may cause feelings of guilt, anxiety, or stress. “We need to give all patients the best chance of getting an accurate diagnosis so that we can provide them with the proper care that accompanies that diagnosis.”
The Dead Salmon Effect?
The art of mind reading is constantly improving. Perhaps the most promising method is electroencephalography (EEG), which uses electrodes attached to the scalp to detect "crackling" resulting from electrical activity in the brain. This method is cheap and fast (lag is measured in milliseconds, compared to 8 seconds for MRI), which allows the research team to ask up to 200 questions in 30 minutes.
In addition, this method is also applicable to patients with signs of spastic muscle contraction, as well as to patients for whom implants have been used to recover. “This is an extremely vulnerable patient population and moving around is never easy,” says Owen, whose team equipped the jeep for this purpose. "Instead, we load the equipment into our EE-Jeep and go to them ourselves."
"We don't want to be too conservative and insist on statistics while missing out on something important."
Stephen Loris
Schiff's team is skeptical that it is this particular EEG methodology used with the detector that actually works. “One should beware of the 'dead salmon effect',” Loris admits, referring to the apparently frivolous study of a dead fish, which, however, led to quite serious conclusions about the limitations of MRI. That methodology could not distinguish real brain activity from normal background “noise”, thus suggesting that a thought process was going on in the head of a dead Atlantic salmon that was placed in a scanner.
"We don't see dead fish as a cause for delight," says Loris, "but on the other hand, we don't want to be overly conservative and insist on statistics while missing out on something important."
A ray of light in the dark kingdom
Today it has become the norm to think about the borderline between life and death in terms of the brain, not the heart. In a patient in a steady vegetative state, the brain stem is still functioning, allowing the person to breathe unaided. Such patients may be (to a certain extent) conscious and retain some chance of recovery. In comparison, a PET scan of a brain-dead person reveals a black void inside the skull, a barren brain landscape with no chance of reactivating. The body of such a person will not survive without artificial assistance.
"We still have to do some small but amazing studies that will show what is generally possible in individual cases."
Nicholas Schiff.
Schiff believes that the use of devices in combination with drugs and cell therapy, laying the foundation for a new generation of diagnosis and treatment, will illuminate the dark zone between the conscious and the unconscious.
“We have not yet managed to achieve the goal,” he emphasizes. Much of the work done to date demonstrates the importance of brain imaging for this patient population in general, but ultimately, reliable methods are needed that work for every patient.
“We still have a few small but amazing studies to do that will show what is generally possible in individual cases. And then everyone [of the patients] will receive what can help him,”says Schiff. He is confident that a shift in the general perception of the problem will sooner or later take place.
Loris suggests that we should perhaps start with the language used to describe these patients. He wants to replace the incorrect term "vegetative state" with a neutral one - "unconscious (passive) wakefulness."
Despite the skepticism surrounding him, the difficulties in working with such dissimilar patients, the difficulties of standardizing the diagnosis, the research is gradually moving forward. It has already done what was previously unthinkable for people in a vegetative state: some of them, for example, were able to inform their doctors that they needed a pain reliever …
