On 20 December 1999, a young man pulled away in his car from his grandfather’s house in Sarnia, Ontario, with his girlfriend in the passenger seat beside him. Scott Routley, who was 26, had studied physics at the University of Waterloo and had a promising career in robotics ahead of him. But at an intersection just a few blocks from his grandfather’s house, a police car travelling to the scene of a crime crashed into the side of Scott’s car, hitting the driver’s side full on. The police officer and Scott’s girlfriend were taken to the hospital with minor injuries. Scott wasn’t so lucky; his injuries were devastating.

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Scott was admitted to hospital, and within hours his score on the Glasgow coma scale – a neurological scale that measures a person’s conscious state – was rapidly dropping. The lowest score possible is three, indicating “does not open eyes”, “makes no sounds” and “makes no movements”. The highest score, 15, indicates that you are fully awake, conversing normally and obeying commands. Scott was already a four, just one step away from complete shutdown. Despite no outward signs of head or facial injury, the impact of the police car with the side of Scott’s car had slammed his brain against the inside of his skull, squeezing it into herniation and bruising it badly.

I heard about Scott 12 years later, soon after arriving in London, Ontario, where I run a lab that studies acute brain injuries and neurodegenerative diseases. “His family are convinced he is aware, but we have seen no signs of it, and we’ve been observing him for years!” Scott’s doctor told me.

When I took a look at Scott, he certainly seemed vegetative to me. But I needed an expert second opinion, so I called Prof Bryan Young, a senior neurologist in the area. Bryan had been seeing Scott regularly since his accident 12 years earlier, and had an international reputation for meticulous and careful assessment of patients. If he thought Scott was vegetative, then I knew chances were that he was.

I told Bryan that I was thinking of putting Scott into a functional magnetic resonance imaging scanner (fMRI), and he agreed that this was a good idea. This remarkable technology, developed for use in humans in the early 1990s, allows us to detect brain activity associated with thoughts, feelings and intentions. More active areas of the brain receive more oxygenated blood, and the fMRI scanner can detect this and pinpoint where the activity is occurring. This allows us to see when a person is conscious and their brain is working normally, even when outward appearances suggest they are in a zombie-like state, unaware of the world around them. We have come to refer to such people as inhabiting the “grey zone”, a realm of consciousness that lies somewhere between life and death.

In recent years, thanks to the invention of fMRI, we have made extraordinary breakthroughs in understanding the mental life of people trapped in the grey zone. We have discovered that 15% to 20% of people in the vegetative state, who are widely assumed to have no more awareness than a head of broccoli, are in fact fully conscious, even though they never respond to any form of external stimulation. They may open their eyes, grunt and groan, and occasionally utter isolated words. They appear to live entirely in their own world, devoid of thoughts or feelings. Many really are as oblivious and incapable of thought as their doctors believe. But a sizeable number are experiencing something quite different: intact minds adrift deep within damaged bodies and brains. We have even figured out how to communicate directly with such people.

I set off to Parkwood hospital, a long-term care facility in southern Ontario, to assess Scott more thoroughly. In a quiet room off the ward where Scott was staying, a nurse introduced us to his parents, Anne and Jim. Anne, who had worked as a lab technologist, gave up work on the day of Scott’s accident. Her husband, Jim, was a former banker and trucker. They were clearly devoted to Scott and his life, such as it was, post-injury. Jim and Anne told us that they believed Scott, who loved listening to music from The Phantom of the Opera and Les Misérables, was responding to them, despite his diagnosis: “His face is expressive,” Anne insisted. “He blinks. He does thumbs up for positives.”

Given Bryan’s multiple assessments over the years, coupled with our own evaluation of Scott’s condition, this was curious indeed. We couldn’t make Scott do a thumbs-up, no matter how hard we tried. I checked his official medical history. Neither Bryan nor any of the other doctors who had examined Scott over the years had indicated that he could do a thumbs-up since his injury.

Nevertheless, his family were adamant: Scott was responsive, and therefore Scott was aware.

Curious as it was, I had seen this scenario many times over the years. A family is convinced the person they love is aware, despite the absence of any clinical evidence to support this. One consequence of the brutality and abruptness of most serious brain injuries is that the doctor who assesses the patient – usually a trained neurologist – has generally not met the person in his or her former, healthy life. All the doctors know of the patients is what they see after the accidents. The family has the benefit of years of experience, a much more complete picture of the person within. Families also typically spend a lot more time with the patient after the accident. Neurologists, like all doctors, are busy and have a pile of clinical commitments and patients. That limits how much time they can devote to any one person. By contrast, many family members sit at the bedside for hour after hour, day after day, clutching to the faintest glimmer of hope, watching for the tiniest sign of awareness. It’s natural that if it is there, they will be the first to see it.

But all that time, effort and hoping is also sure to fuel wishful thinking. We are all terribly susceptible to what psychologists call confirmation bias. We tend to search for, interpret, favour and recall information in a way that confirms our pre-existing beliefs. If the person you love most is lying beside you in a hospital bed, their life hanging by a thread, you desperately want them to pull through. And you desperately want them to know you’re there. You ask them to squeeze your hand if they can hear you – and it happens! You feel a distinct increase in pressure as their hand gently squeezes yours. Your immediate reaction? They did what you asked, they responded, they’re aware! It’s a perfectly natural, but unfortunately not scientific, response. Science demands reproducibility.

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As a scientist dealing with the families of patients who are in the grey zone, I have often found myself in the uncomfortable position of being privy to the most graphic and poignant examples of this very human tendency. Families cling to the one time a patient responded on cue to an instruction, but ignore the countless other times that there was no response.

I had no idea whether Scott’s family had succumbed to a confirmation bias, or whether they truly saw something in Scott that we could not measure. As a scientist I tend toward the former idea, but as a human being I am more than willing to accept the latter. It was impossible not to be moved by Scott’s family and their utter devotion to making his life as comfortable as possible. I was also moved by their belief, whether scientifically valid or not, that he was aware. They were still there for him, with an endless stream of support and belief in his ability to register the love they all so keenly felt for him, more than a decade after his accident.

As Scott lay in the fMRI scanner, my colleague, Davinia Fernández-Espejo, and I went through the routine we had developed for ascertaining if patients in the grey zone were conscious and aware of what we were saying to them.

Strange as it might seem, we achieve this by asking patients to imagine they are playing a game of tennis in the scanner. When you imagine waving your arms around – as you would if you were playing a vigorous game of tennis – a part of the brain known as the premotor cortex becomes highly active. So if a patient’s premotor cortex responds when we ask them to imagine playing tennis, we know that they are responding to our instructions, and therefore that they are conscious.

Of course, just like a squeeze of the hand, a change of activity in the premotor cortex demands reproducibility, and we don’t conclude that a patient is conscious until we have seen that the response is consistent and reproducible. We also check to make sure the patient can reliably activate at least one other part of their brain on command. For example, we ask them to imagine walking from room to room in their homes because, if they are conscious and aware, this will reliably activate a different part of the brain known as the parahippocampal gyrus.

“Scott, please imagine playing tennis when you hear the instruction,” I said.

I still get goose bumps when I remember what happened next. Scott’s brain exploded in an array of colour-activation, indicating that he was indeed responding to our request and imagining he was playing tennis.

“Now imagine walking around your house, please, Scott.”

Again Scott’s brain responded, demonstrating that he was there, inside, doing exactly what he was asked. Scott’s family was right. He was aware of what was going on around him. He could respond – perhaps not with his body, in quite the way they had insisted he could, but certainly with his brain. (This moment was caught on camera by the BBC, who were filming a Panorama documentary about our research.)

What now? What should we ask Scott? Davinia and I looked at each other nervously. We had already used our fMRI method to establish that Scott was conscious. Could we now use it to ask him whether he was in any pain? I tried to imagine what his answer might be. What if Scott said yes? The thought that he might have been in pain for 12 years was too horrible to contemplate. Yet it was a real possibility. If Scott said he was in pain, I wasn’t sure how I would respond. And then there was his family – how would they react? Suddenly, the presence of the television crew made the whole scenario a whole lot more complicated, but I couldn’t change that. I had to talk to Anne.

I stood up and walked slowly out of the windowless control room to where I knew Anne was waiting. The cameras followed me. Anne stood by the doorway, smiling.

My mind raced. “We would like to ask Scott if he is in any pain, but I would like your permission.”

This was a pivotal moment. I was asking Anne whether we could, for the first time, ask a patient such as Scott a question that could potentially change his life for ever. If Scott had been in pain for 12 years, no one would have known. It’s impossible to imagine the endless nightmare his life would have been.

Anne looked up at me. Through this entire episode she had remained stoic, almost cheery. I imagined that she must have come to terms with her son’s situation many years earlier.

“Go ahead,” said Anne. “Let Scott tell you.”

I walked back into the scanning room, trailing the film crew. The atmosphere was electric. Everyone knew what the stakes were. We were going to push grey-zone science to the next level. This was no longer just an abstract question of scientific progress – this was an unprecedented chance to help a patient in the grey zone, and potentially thousands more like him in the future.

“Scott, are you in any pain? Do any of your body parts hurt right now? Please imagine playing tennis if the answer is no.”

At that moment, we could barely breathe, leaning forward in our chairs. Through the fMRI window, we could see Scott’s inert body in the scanner’s glistening hollow tube. The interfaces of multiple machines all worked together in elaborate synchronisation so that our two minds could briefly touch each other and ask that most basic question: are you in pain?

The results appeared on the computer screen before us more or less instantly. We had a three-dimensional reconstruction of the patient’s brain – so lifelike you felt as if you could reach out and touch it. This brain image was the canvas on which “brain activity”, in the form of brightly coloured blobs, was painted.

“If Scott is responding, we should see a response here,” I said, touching a particular spot on the shiny glass screen.

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As we peered at the display, we could see all the folds and crevices of Scott’s brain – the healthy tissue and the tissue left irreparably damaged by the speeding police cruiser 12 years earlier. Then we began to notice something more: Scott’s brain was springing to life, starting to activate. Bright red blobs began to appear – not randomly, but exactly where I was pressing my finger on to the computer screen.

There it was. Scott was responding. He was answering the question. And more important, he was answering “no”. There was a general collapse and congratulations throughout the room. Scott had told us: “No, I am not in pain.”

I collected myself. I was close to tears. This was Scott’s moment, and he grabbed it. We could all see that. After a few moments, the tension burst and everyone heaved a huge sigh of relief. Everyone, that is, except for Anne. When I told her the news, she was remarkably blase. “I knew he wasn’t in pain. If he was, he would have told me!”

I could only nod my head dumbly. The courage of both of them overwhelmed me. She had stood by him all those years, insisting that he still mattered, and that he deserved affection and attention. She had not given up on him. She would never give up. Scott’s response in the scanner simply confirmed what Anne already knew: that Scott was still in there.

For 12 years, Scott had remained silent, locked inside his body, quietly watching the world go by. Now, the fMRI had revealed a person: a living, breathing soul who had a life, attitudes, beliefs, memories and experiences, and who had the sense of being somebody who was alive and in the world – no matter how strange and limited that world had become.

On many occasions in the months that followed, we conversed with Scott in the scanner. He expressed himself, speaking to us through this magical connection we had made between his mind and our machine. Somehow, Scott came back to life. He was able to tell us that he knew who he was; he knew where he was; and he knew how much time had passed since his accident. And thankfully, he confirmed that he wasn’t in any pain.

The questions we asked Scott over the next few months were chosen with two goals in mind. In part, we tried to help him as best we could, by asking questions that might improve his quality of life. We asked him whether he liked watching ice hockey on TV. Prior to his accident, Scott had been a hockey fan and his family and carers would tune his TV to a hockey game as often as they could. But more than a decade had passed since Scott’s accident. Perhaps he no longer liked hockey? Perhaps he had watched so much hockey that he could not stand it any longer? If so, checking in to see what his current viewing preferences were might significantly improve his quality of life. Fortunately, Scott still enjoyed watching hockey, much as he had for many of the years prior to his accident.

The second type of questions we asked Scott were chosen to reveal as much as possible about his situation, what he knew, how much he remembered, and what sort of awareness he had. These questions were less about Scott the person and more about helping us to dig deeper into the grey zone. Understanding what situations were psychologically possible in this limbo was incredibly important, because no one knew the answers yet, and as it turned out, many people had made wildly erroneous assumptions.

For example, after lecturing about patients in the grey zone, I had often heard comments such as “I doubt they have any sense of the passage of time”, “they probably don’t remember anything about their accident”, or even “I doubt they have any awareness of the predicament they’re in”.

Scott told us otherwise. He answered all of those questions and more. When we asked him what year it was, he told us correctly that it was 2012, not 1999, the year of his accident – clearly he had a good sense of the passage of time. He knew that he was in a hospital and that his name was Scott – he had a good sense of who he was and where he was. Scott was also able to tell us the name of his primary caregiver. This was important to us and to our understanding of grey-zone science, because one question that had frequently come up was what patients in this situation could remember. Scott would not have known his caregiver prior to his accident, so his knowing her name was clear evidence that he was still able to lay down memories.

In September 2013, Scott died of medical complications from his original accident. This is an all-too-common outcome, even many years after a serious brain injury. All that lying around and exposure to the army of obnoxious viruses, bacteria and fungi that populate every hospital ward deadens the immune system and makes you highly susceptible to conditions such as pneumonia. After several weeks fighting infections, Scott died at Parkwood.

It shocked my whole team. We had spent many hours with Scott and he was part of the family. We had never had a real conversation with him, yet bizarrely we all felt we knew him. He had touched us deeply. We had dug deep into his life in the grey zone, and he had responded with answers that left us in awe of his strength and courage. His life had become interwoven with ours.

The wake was packed. Scott’s body lay in an open coffin towards the back of the room. Friends and family had come from near and far. Despite his 14 years of being mostly inside himself and cut off from the world, at the time that Scott died, many people still felt a profound connection with him.

When I saw Scott’s body, I had such an odd response. In many ways, he looked as he had always looked to me. I hadn’t known the real Scott – the Scott who had lived a full and happy life, who walked and talked and laughed and moved purposefully through the world until the age of 26, when all that was suddenly and permanently taken from him. I had only known this Scott, the physically non-responsive Scott, the Scott lying in front of me. It occurred to me right then that this grey zone, this place that is home for many of our patients, truly is the borderland between life and death. It’s so close to death that sometimes it’s hard to tell the difference. Scott was still there in the way that he had always been for me, even though now he wasn’t there at all.

On Scott’s obituary web page I wrote: “It was a great privilege getting to know Scott these past few years. His heroic efforts for science will never be forgotten, and will be reflected in the lives and minds of all of us who knew him, and many more who didn’t.”

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The relationship that we developed with Scott and his family was unlike any other that my team has experienced before or since. In part it was Anne and Jim’s warmth and openness in sharing their world and bringing us into their lives, but more than that, Scott himself created and sealed our bond. To communicate for the first time with another human being who has been unable to communicate for more than a decade is an extraordinary experience. To do it again and again is magical. Scott let us into his world, and we laughed with him, joked with him, and cried with him. When that door shut and Scott was finally gone, I think a little part of all of us died with him.

Main image: Getty

Into the Grey Zone: A Neuroscientist Explores the Border Between Life and Death by Adrian Owen will be published by Guardian Faber on 7 September at £16.99. To order a copy for £11.99, go to guardianbookshop.com or call 0330 333 6846. Free UK p&p over £10, online orders only. Phone orders min. p&p of £1.99.

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