Dr. Adrian Owen writes movingly of the patients he grew attached to and those he lost in his new book, Into the Gray Zone. One was named Carol. She was the first patient to be able to play Dr. Owen’s vegetative video game, as his first attempt at what would become his famed tennis study.
Carol’s seemingly offline brain was able to follow instructions to imagine playing tennis for yes and walking through her home for no as part of Dr. Owen’s now-famous tennis study. Each activity stimulated a different area of her brain, which an fMRI machine recorded as increased blood flow.
This was a first contact with an alienated mind, trapped within a body incapable of outward response. Like mine was.
Sadly, Carol has not been as lucky as I’ve been. But more on that shortly.
A top-seed player from a larger follow-up tennis study, Scott Routley, left an even bigger emotional impact on Dr. Owen. While there were details I left out of my Skeptical Inquirer article, I had no idea how extensive the connection between Dr. Owen’s team and the Routley family had been.
Dr. Owen and his associates were able to not only determine that Scott wasn’t in pain — a first and so far last — but aid in numerous aspects of his comfort and care. If Scott had grown bored by the hockey games his caretakers played for him, they could’ve become a form of mental torture.
This point was illustrated by a story related to Dr. Owen. A patient was a fan of Celine Dion, though she only owned one of the Canadian singer’s albums. Her mother dutifully played it for her as she lay in her hospital bed, unresponsive. When she awoke, she warned,
If I ever hear that Celine Dion album again, I will kill you!
Presumably, she was kidding. Yet, as Dr. Owen wryly notes,
Hours and hours of listening to Celine Dion would jeopardize anyone’s quality of life, but imagine you were confined to bed and could do nothing about it. A recipe for going quietly insane.
Scott and his devoted parents, Anne and Jim, became members of the research team. And in turn, the researchers felt like family to the Routleys.
Dr. Owen’s team were able ask Scott about many aspects of his care, for the first time allowing an apparently nonresponsive patient to participate in their own care. They also queried him about the extent of his knowledge about the passage of time and of himself, shedding light into his gray zone of consciousness. Scott, for instance, was aware that it was 2012, not late December, 1999, the time of his accident, conclusively showing that he was laying down new memories.
Though many of the researchers’ question didn’t directly help Scott, the loving and supportive Routley parents understood that the tennis study questions lobbed at their son would help far more in the future.
A Tennis Study Voice Stilled
The full title of Dr. Owen’s book is, Into the Gray Zone: A Neuroscientist Explores the Border Between Life and Death. That was never more true than with Scott Routley.
Scott was assessed at being 4 on the Glasgow Coma Scale (Juan Torres was 3 and I may have been between 6-8). 3 is the lowest possible before brain death. Yet, as you can see with the other examples, the Glasgow Coma Scale has little to no meaning when it comes to covert awareness.
In Juan’s and my cases, we both unexpectedly emerged from our vegetative states. Scott, tragically, eventually succumbed to complications from his accident.
The Routley’s were naturally devastated. But so were the researchers.
Dr. Owen attended Scott’s wake. He was surprised when Jim Routley invited him to view Scott in his open casket. (Open casket funerals are uncommon in Dr. Owen’s native Great Britain.)
As he viewed Scott’s body, Dr. Owen had, as he says himself “an odd response,”
It occurred to me right then that this gray 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 hard to tell the difference between the two. Scott was still there in the way he had always been there for me, even though now he wasn’t there at all.
At least Scott’s parents at least had the comfort of knowing that the most important part of their beloved son was still intact until he died. But Carol’s loved ones never got to learn that she was in there. Her personal physician denied Dr. Owen’s request to inform her parents of the stunning results of his tennis study.
To this day, they’ve never been informed that daughter’s mind is still intact.
Mindful of the fact that Kate and Debbie had recovered after their loved ones learned of their awareness, Dr. Owen was devastated not to be able to inform Carol’s loved ones.
As someone who was covertly aware, my heart breaks to think about it too.
Still, my experience shows that Carol’s physician wasn’t completely wrong about the potential psychological landmine this knowledge could explode.
Related to my Skeptical Inquirer article, a father whose son who had been vegetative for years reacted vehemently against the very concept of covert cognition on Facebook. To him, the idea that his long-vegetative son was aware of his fate was too painful to even contemplate.
If Carol never recovers, would her loved ones have been haunted by their impotence to free her trapped mind?
Yet, there’s a strong argument to be made that this knowledge could actually increase the odds that Carol might eventually experience some level of recovery.
Indeed, this is one of the many reasons why I feel imperative to spread the word about covert awareness. But when I do, I now try to be mindful of the feelings of loved ones who were faced with the unimaginably painful decision to pull the plug, without benefit of adequate, widespread awareness testing.
Covert Awareness Testing: The Next Generation
While Dr. Owen and his team of researchers continued to use the tennis study technique to discover covert cognition in outwardly vegetative patients, they’re also working to improve their mobile, EEG, awareness-detection techniques via their EEJeep. Researchers can’t use the tennis study technique with EEG awareness testing, but instead rely on unexpected word pairs to fire a synaptic…huhs?
Only a tiny fraction of Canadians with disorders of consciousness will ever be wheeled into the Owen Lab for their own personal tennis study. And that leaves out their neighbor to the south, not to mention the rest of the world.
In the note section of Into the Gray Zone, Dr. Owen estimates that as many as seven thousand vegetative Americans “might actually be aware of everything going on around them.” And, as Dr. Owen expounds in his notes:
It would be another twelve years until we were able to publish in the British neurological journal Brain from a large group of patients like Kate [Bainbridge], showing that a positive response in the brain scanner is a good sign, can herald some kind of recovery, and is therefore a valuable prognostic tool.
Those that respond are more likely to experience “some kind of recovery.”
Add to that the suggestion Dr. Owen himself makes: The very fact that he discovered that Kate and Debbie were “in there” may have increased their mental stimulation, visitation from loved ones, etc.
Scott Routley tragically died from a series of infections as a result of the car accident that disconnected his lifeless body from his alive mind. His family had long insisted that he was in there, but as is so common, their observations were dismissed by Scott’s doctors.
I’ll leave you with the words Dr. Owen wrote in Scott Routley’s obituary.
It was a great privilege getting to know Scott these past few years. His heroic efforts to will never be forgotten and will be reflected in the lives and minds of all of us who 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 gray zone, and he responded with answers that left us in awe of his strength and courage. His life had become interwoven with ours.
Dr. Owen honors Scott’s memory every day he works to identify more patients whose active minds are left adrift in an inactivated body.
**All excerpt were taken from Into the Gray Zone: A Neuroscientist Explores the Border Between Life and Death.**
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