The long read: After suffering serious brain injuries, Scott Routley spent 12 years in a vegetative state. But his family were convinced that he was still aware could a pioneering mind-reading technique prove them right?
On 20 December 1999, a young man pulled away in his car from his grandfathers 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 grandfathers house, a police car travelling to the scene of a crime crashed into the side of Scotts car, hitting the drivers side full on. The police officer and Scotts girlfriend were taken to the hospital with minor injuries. Scott wasnt so lucky; his injuries were devastating.
Scott was admitted to hospital, and within hours his score on the Glasgow coma scale a neurological scale that measures a persons 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 Scotts 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 weve been observing him for years! Scotts 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 Scotts 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 Misrables, was responding to them, despite his diagnosis: His face is expressive, Anne insisted. He blinks. He does thumbs up for positives.
Given Bryans multiple assessments over the years, coupled with our own evaluation of Scotts condition, this was curious indeed. We couldnt 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. Its 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 youre 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, theyre aware! Its a perfectly natural, but unfortunately not scientific, response. Science demands reproducibility.