A Neuroscientist Shares What It's Like to Explore the Space Between Life and Death

Adrian Owen's "Into the Gray Zone" tells the stories of patients in vegetative states.

Courtesy of Unsplash

In 1999, a young man named Scott was in a car accident that left him in a vegetative state. Even 12 years after his injury, Scott’s family insisted that he responded to them, despite a neurologist’s assurances that he couldn’t. A BBC crew filmed the session of author and neuroscientist Adrian Owen’s scan of Scott’s brain.

As Scott lay in the scanner, Davinia and I went through the usual routine.

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

I still get goose bumps when I remember what happened next. Scott’s brain exploded in an array of color—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 with his brain! This fantastic moment was caught on camera by the BBC.

What now? What should we ask Scott? Davinia and I looked at each other nervously. We badly wanted to push things to the next level, to ask Scott something that would be meaningful for him. Not something practical and bland such as whether he remembered his mother’s name, but something that could, potentially, change his life. We had talked a lot about the benefits of asking a patient whether he or she was in physical pain. Pain is entirely subjective and can only be probed through self-report. 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 twelve years was too horrible to contemplate. Yet it was a real possibility. If Scott said yes, 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 BBC camera crew made the whole scenario a whole lot more complicated, but I couldn’t change that. I had to go talk to Anne.

I held my head low to avoid the camera lens and asked Davinia in a hushed whisper, “Do you think we should do it?”

“We should. We have to.”

I knew Davinia was right, we had to. Scott and his family deserved it. It was time to do something that might actually benefit one of our patients, time to do the right thing. If Scott was in pain, we needed to give him the opportunity to tell us that, and if so, we needed to do something to help him.

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’d like to ask Scott if he is in any pain, but I’d 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 forever. If Scott had been in pain for twelve years, no one would have known. It’s impossible to imagine the endless nightmare that his life would have been.

We could have just gone ahead and asked, I suppose; but Anne was right there in the control room, and after everything she had been through, after all the years of hoping and thinking that Scott was in there, I knew I owed it to her to get some sense of whether that is what she wanted. I wanted her to be the one to say, “Do it!” And I wanted her to want this, for her and for Scott.

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 lm crew. The atmosphere was electric. Everyone knew what the stakes were. We were going to push gray-zone science to the next level. This was no longer just a question of scientific progress—this was clinical benefit writ large. Again, thoughts of arguments with Maureen about the tensions between science for science’s sake versus clinical care came flooding back like ghosts from my past.

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

Davinia and I intently watched the screen. Fergus hovered silently over my shoulder. We’d come a long way since scanning Kate almost fifteen years earlier. Back then, we’d have to wait a week or more for the results to be analyzed. I could hardly believe that we used to sit by for a whole week waiting to see whether there’d been a response. In 2012, the results appeared on the computer screen before us more or less instantly. They were a whole lot sexier looking too. In 1997 our “results” consisted of a bunch of numbers on a page telling us where the activity was in the patient’s brain, and whether it was statistically significant. By 2012 we had a three-dimensional structural 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 colored blobs was painted. They are beautiful images that vividly portray the brain at work.

As we peered at the screen before us, we could see all the folds and crevices of Scott’s brain, both the healthy tissue and the tissue left irreparably damaged by the speeding police cruiser twelve 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 onto the computer screen.

Moments earlier I had said to Fergus, “If Scott is responding, we should see a response here,” as I touched the shiny glass. And 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. It was such a dizzying situation—a medical scientific breakthrough; the all-seeing eye of what would be prime-time watching; Scott’s inert body lying motionless in the scanner; my team standing around in stunned wonder. The BBC film crew were beside themselves; they had got exactly what they wanted, but at that moment, for the first time in two years, I felt as if none of that mattered. 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 Anne.

When I told her the news, she was remarkably blasé. “I knew he wasn’t in pain. If he was, he would have told me!”

I was a mess and 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 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. She knew Scott was in there. How she knew, I will never know. But she knew. 

Excerpted from Into the Gray Zone by Adrian Owen. Copyright © 2017 by Adrian Owen. Excerpted with permission by Scribner, a Division of Simon & Schuster, Inc.

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