Inside Scott’s Mind
Through his groundbreaking work with vegetative-state patients, neuroscientist Adrian Owen explores the secrets we carry within us
Through his groundbreaking work with vegetative-state patients, Dr. Adrian Owen explores the secrets within us. FROM INTO THE GRAY ZONE
On December 20, 1999, a young man pulled away in his car from his grandfather’s house in Sarnia, Ont., with his girlfriend in the passenger seat. Scott Routley, then 26, had a promising career in robotics ahead of him. He’d driven just a few blocks when a police cruiser travelling to the scene of a crime T-boned his car, hitting the driver’s side full on. The officer and Scott’s girlfriend were taken to the hospital with minor injuries. Scott wasn’t so lucky.
He was admitted, and within hours his score on the Glasgow Coma Scale— a neurological scale used to measure a person’s conscious state—was plummeting. The highest score, 15, indicates that the patient is fully awake, conversing normally and obeying commands. Scott was already a 4, one step away from shutdown. Despite no outward signs of head or facial injury, his brain was badly damaged.
Twelve years later, I moved from England to London, Ont., to become the Canada Excellence Research Chair in Cognitive Neuroscience and Imaging at Western University. Soon after I arrived, I heard about Scott. I had contacted Bill Payne, a doctor at Parkwood Hospital, a long-term care facility on the city’s south side, asking whether he knew of any patients who might be suitable for my team’s studies. Scott was first on Bill’s list. “Scott’s an interesting guy,” Bill said. “His family are convinced he’s aware, but we’ve seen no signs of it, and we’ve been observing him for years.”
I had a chance to take a look at Scott. He certainly seemed vegetative. But I needed an expert second opinion, and no one could provide a better one than Professor Bryan Young, a senior neurologist in the area with an international reputation and years of working with vegetative and comatose patients.
Bryan had been seeing Scott regularly since his accident. As the local neurologist with the greatest amount of experience in disorders of consciousness, he had examined Scott most closely. He believed Scott was vegetative, so I knew this was likely. I told him I was thinking of putting Scott into the
WE COULDN’T GET SCOTT TO DO A THUMBS-UP. BUT HIS FAMILY REMAINED ADAMANT: SCOTT WAS AWARE.
fMRI (functional magnetic resonance imaging) scanner, and he agreed. “Please tell me what you find,” he said.
I set off to Parkwood to assess Scott more thoroughly, along with Davinia Fernández-Espejo, one of the postdoctoral students who had moved with me to Canada from Europe. 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 her job on the day of Scott’s accident. Jim was a former banker and trucker. They were a lovely
couple, clearly devoted to their son and his life, such as it was, post-injury. After the accident, they had relocated to a one-storey bungalow outside London, where Scott could stay when he wasn’t being cared for full time at Parkwood. They told us that, despite his diagnosis, they believed Scott was responding to them. “His face is expressive,” Anne insisted. “He blinks. He does thumbsup for positives.”
Given Bryan’s multiple assessments over the years, coupled with our own evaluation of Scott’s condition, this was a curious comment. We couldn’t get him to do a thumbs-up, no matter how hard we tried. I checked his medical history. Neither Bryan nor any of the other doctors who had examined Scott since his injury had indicated that he could do a thumbs-up. Nevertheless, his family remained adamant: Scott was responsive, and therefore he was aware.
CURIOUS AS IT WAS, I had seen this scenario many times over the years. In the absence of any clinical or scientific evidence, a family is convinced that the person they love is aware. The family members speak and interact with that person as though he or she is fully conscious. Why? Do they have some kind of heightened sensitivity to the patient’s mental state?
One consequence of the brutality and abruptness of most serious brain injuries is that the doctor who assesses the patient—usually a qualified neurologist—generally has not met the person in his or her former life. All that the doctors know of the patient is what they see after the accident. The
TIME, EFFORT AND HOPE FUEL WISHFUL THINKING, AND THE HINT OF A RESPONSE CAN ALTER A FAMILY’S PERCEPTION.
family has the benefit of years of experience and a much more complete picture of the person within. Family members also sit at the bedside hour after hour, day after day, watching for the tiniest sign of awareness.
But all of that time, effort and hope surely fuel wishful thinking, and the slightest hint of a response can alter a family’s perception. We are all susceptible to what psychologists call “confirmation bias,” which is a real thorn in the side of grey-zone science, the study of how intact minds can sometimes be adrift deep within damaged bodies
and brains. We tend to search for, interpret, favour and recall information in a way that confirms our preexisting beliefs. If the person you love most is lying beside you in a hospital bed, her life hanging by a thread, you desperately want her to pull through. And you desperately want her to know you’re there. You ask her to squeeze your hand if she can hear you—and it happens! You feel a distinct increase in pressure as her hand gently squeezes yours. Your immediate reaction? She did what you asked, she responded, she’s aware! It’s a perfectly natural but unfortunately unscientific response. Science demands reproducibility. Families cling to the one time a patient responded on cue to an instruction, but they ignore the countless other times when there was no response.
The power of confirmation bias is only half the problem. Imagine what happens when you are not there at your loved one’s bedside. Imagine that hand squeezes occur regularly, all the time, with or without an explicit instruction. It means nothing; it’s just a spontaneous automatic movement, devoid of conscious intent. But you are not there to experience that.
These two phenomena (confirmation bias and events occurring without witnesses) contribute to our tendency to place great weight on the responses we see, and to disregard negative responses or ones we don’t see. Statistically, this is all data that should be given the same weight.
I had no idea whether Scott’s family had succumbed to confirmation bias or whether they truly saw something in him that we could not measure. As
A BBC FILM CREW HAD ASKED IF THEY COULD RECORD OUR SCANNING SESSION WITH SCOTT FOR THE SERIES PANORAMA.
a scientist, I am prone to 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 devotion to him.
We tried many times, but we could never reproduce any kind of physical response from Scott under scientifically controlled conditions. The evidence suggested that he was indeed in a vegetative state.
A BBC FILM CREW had asked if they could record the scanning session with Scott. They had been following our
work for their series Panorama, and they would be making a one-hour documentary about us. Our move to Canada had threatened to disrupt filming, which had begun in England, but the crew, led by medical correspondent and host Fergus Walsh, decided to cross the Atlantic and follow our progress.
Once I’d agreed to be filmed, a camera crew followed me day and night. They were filming Davinia FernándezEspejo and me the day we scanned Scott. As he lay in the machine, Davinia and I went through the usual routine. “Scott, please imagine playing tennis when you hear the instruction.” Six years earlier, my team had hit on the idea of asking patients who were physically non-responsive this question as a way of identifying consciousness. We had needed a task that involved intentional mental activity—one that was complex but easy to imagine.
I still get goosebumps when I recall what happened next. The scan of 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 his brain responded, demonstrating that he was there, inside, doing exactly what he was asked. His 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 with his brain.
What now? Davinia and I looked at each other nervously. We badly wanted to ask him something that could
THE THOUGHT THAT SCOTT MIGHT HAVE BEEN IN PAIN FOR 12 YEARS WAS DREADFUL. YET IT WAS A REAL POSSIBILITY.
change his life. We had often discussed the benefits of asking a patient whether he or she was in physical pain. If Scott indicated yes, we would need to do something to help him.
The thought that he might have been in pain for 12 years was too dreadful to contemplate. Yet it was a real possibility. If he told us he was in pain, I wasn’t sure how I would respond. And how would his family react? I needed to talk to Anne.
I walked out of the windowless control room to where I knew Scott’s mother was waiting. The omnipresent
cameras followed me. She stood by the doorway.
My mind raced. “We’d like to ask Scott if he is in any pain, but I’d like your permission.”
Anne looked up at me. Throughout 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,” she said, smiling. “Let Scott tell you.”
I walked back into the scanning room. The atmosphere was electric. Everyone knew what the stakes were. We were going to push grey-zone science to the next level.
“Scott, are you in any pain? Do any of your body parts hurt right now? Please imagine playing tennis if the answer is no.”
I still shudder when I think about that moment. Through the fMRI window, we could see Scott’s inert body in the scanner’s glistening tube. The interfaces of multiple machines worked in elaborate synchronization so our minds could briefly touch and I could ask him: Are you in pain?
Davinia and I watched the screen intently. Fergus Walsh, the BBC host, hovered by my shoulder. As we peered at the computer, we could see all the folds and crevices of Scott’s brain, both the healthy tissue and the part left irreparably damaged by the speeding police cruiser.
Then we began to notice something more. His brain was springing to life, starting to activate. Bright red blobs appeared; not randomly, but exactly where I was pressing my finger on the computer screen.
WHEN I TOLD ANNE THE NEWS, SHE WAS BLASÉ. “I KNEW HE WASN’T IN PAIN. IF HE WAS, HE WOULD HAVE TOLD ME!”
Moments earlier, I had told Fergus, “If Scott is responding, we should see that here,” as I touched the glass. And there it was. He was answering the question. And, more important, he was telling us no.
I felt close to tears. It was such a dizzying situation—a medical breakthrough; Scott’s body lying motionless in the scanner; my team standing around in wonder; the all-seeing eye of what would be prime-time television watching. The film crew were beside themselves; they had got what they wanted, but right that minute
none of it mattered. This was Scott’s moment, and he grabbed it.
After a few minutes, the tension burst and everyone heaved a sigh of relief. Everyone, that is, except Anne. When I told her the news, she was blasé. “I knew he wasn’t in pain. If he was, he would have told me!”
I could only nod dumbly. The courage of both mother and son overwhelmed me. She had stood by him all those years, insisting that he still mattered and deserved affection and attention. She had not given up on him.
Scott’s response in the scanner simply confirmed what she already knew. She knew he was in there. How she knew, I will never know. But she knew.
ON THAT DAY, and on many occasions over the next year and a half, we conversed with Scott in the scanner. Somehow, he came back to life. He was able to tell us that he knew who he was, where he was, and how much time had passed since the accident.
The questions we asked Scott 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. So we asked him whether he liked watching hockey. Before the accident, he had been a fan, so his family and caregivers would tune his TV to a game as often as possible. But more than a decade had passed since the accident. Perhaps he no longer liked hockey. Perhaps he’d watched so much hockey that he couldn’t stand it now. If so, checking in on his viewing preferences might significantly improve his quality of life. (Fortunately, he still enjoyed hockey.)
LAYING DOWN MEMORIES IS CENTRAL TO OUR SENSE OF TIME PASSING, OF OUR PLACE IN THE SCHEME OF THINGS.
The second type of question was chosen to reveal details about his situation, what he knew, how much he remembered, what sort of awareness he had. These were less about Scott the person and more about digging deeper into the grey zone. Understanding that state of limbo was incredibly important, because no one had that information.
Scott answered all of those queries and more. When we asked him what year it was by offering him a simple multiple-choice option—“If we’re in 2012, imagine playing tennis, and if we’re in 1999 imagine walking through
your home”—he told us correctly that it was 2012, not 1999, the year of his accident. He knew that he was in a hospital and that his name was Scott. He also managed to tell us the name of his primary caregiver, someone he hadn’t known prior to his hospitalization. His knowing her name proved that he could still lay down memories.
Laying down memories is central to our sense of time passing, of life moving along, of our place in the scheme of things. Imagine that every day you woke up and could recall nothing since the day you’d had an accident years earlier. How would things feel?
Your nurse, who may have cared for you day and night for a decade, would seem like a complete stranger. Your family and friends, whom you recalled well from before, would suddenly appear much older. And your home, assuming you still lived in the same place, would feel as if it had been extensively renovated overnight; every change that had occurred in the interim would seem to have happened in the few hours since you went to sleep. Worse, if you’d moved since your accident, you would have no idea where you were.
It was critical to know not only that Scott remembered his past, but that he was aware of the present and aware that today’s present would be tomorrow’s past. We wanted to know that he had the experience of existing in time, of being here today as part of an evolving history with events that come and go, all influencing and being influenced by other events on the same timeline.
Throughout Scott’s many visits to the scanning centre to be asked over
SCOTT HAD TOUCHED US PROFOUNDLY. WE HAD DUG DEEP INTO HIS LIFE IN THE GREY ZONE, AND HE HAD LEFT US IN AWE.
and over about life in the grey zone, his mother remained supportive. Clearly, not all of these trips were for Scott; some were for science. In a fine balance, we juggled questions that might be useful in improving his life with ones that might help us understand and perhaps improve the lives of other patients in the grey zone. Anne seemed to understand that.
SCOTT DIED in September 2013 of medical complications from the accident. It shocked my whole team. We had spent many hours with him, and he
had touched us profoundly. We had dug deep into his life in the grey zone, and he had responded with answers that left us in awe. The relationship we developed with the Routleys was unlike any other we experienced with a patient before or since. In part, it was Anne and Jim’s openness in sharing their world with us, but more than that, Scott himself sealed our bond.
Scott was killed by a speeding car, but it took him 14 years to die. For patients like him, who enter the E.R. with a Glasgow Coma Scale score of 4 and receive all of the help modern medicine can provide, 87 per cent will either die or remain in a vegetative state forever. Why do some people slip into the grey zone? Why does the brain shut down sometimes and not others? I still don’t have the answers. Every brain injury is different.
What began for me as a scientific exploration to unlock the mysteries of the human brain has evolved into a different journey. It’s now about pulling people out of the void so they can once more take their place in the land of the living.
Twenty years ago, when we scanned our very first patient, many skeptics dismissed our quest to read the minds of those lost in the grey zone. Yet one day such decoding will be commonplace. This is the magic of science, chipping away at every problem until we can hardly believe the progress we’ve been able to make. Ultimately, grey-zone science promises to reveal the secrets of the universe that each of us carries within our minds. It’s about reconnecting those who have been lost to us with the people they love and who love them. Each contact still feels like a miracle.
FROM INTO THE GRAY ZONE: A NEUROSCIENTIST EXPLORES THE BORDER BETWEEN LIFE AND DEATH BY ADRIAN OWEN. © 2017 BY DR. ADRIAN OWEN. REPRINTED BY PERMISSION OF SCRIBNER, AN IMPRINT OF SIMON & SCHUSTER, INC