Unable to move or speak, most medics thought they were beyond reach. But their families refused to believe it - and one determined scientist proved them right.
Patients in a so-called persistent vegetative state, caught between life and death, appear to be brain dead.
But are they? Their families often think they are still ‘in there’, but doctors disagree.
British neuroscientist Adrian Owen made it his mission to reach these forgotten patients, as he reveals here…
When I first met Carol, she had lain in a hospital bed for months without responding or showing any sign of awareness.
A scan had revealed substantial damage to the frontal lobes of her brain, which control our important cognitive abilities, such as problem-solving, memory, language and judgment.
In July 2005, the married 23-year-old had been hit by two cars while crossing a busy road. A moment’s distraction had redefined the rest of her life. She had repeatedly been tested by neurologists and diagnosed as vegetative. But was she?
British neuroscientist (file pic) Adrian Owen made it his mission to find a way to communicate with patients in a so-called persistent vegetative state
Since 1997, I had been using hospital brain scanners to test patients in vegetative states to see if they were in fact still conscious, though trapped in their bodies.
I was working as a research fellow at the University of Cambridge’s Addenbrooke’s Hospital when I scanned my first ‘vegetative’ patient, Kate, while showing her photos of her family as she lay inside a brain-scanning machine.
To my amazement, she had shown a response in a part of her brain called the fusiform gyrus. This is associated with facial recognition. Some months later, Kate began to rouse from her vegetative state, though no one can say for sure how this happened.
Kate wrote to me a few years afterwards and urged: ‘Please use my case to show people how important the scans are. I was unresponsive and looked hopeless, but the scan showed people I was in there. It was like magic, it found me.’
Since Kate’s case, we have been scanning increasing numbers of vegetative patients to find signs of life. Our evidence suggests that 15 to 20 per cent of people in this state — who are assumed to have no more awareness than a head of broccoli — are fully conscious, though they never respond to external stimulation.
They may open their eyes, grunt and groan, occasionally utter isolated words. Like zombies, they appear to live entirely in their own world, devoid of thoughts or feelings. Many really are as incapable of thought as their doctors believe.
But some patients are experiencing something quite different: intact minds adrift deep within damaged bodies and brains. They are trapped in the grey zone between life and death. My colleagues and I were trying to help them emerge.
So back to Carol. In 2005, we attempted something entirely new. Rather than simply trying to stimulate patients’ brains and see some response, we were going to ask Carol to communicate back to us while she lay in our scanner — a functional magnetic resonance imaging scanner (fMRI). This machine shows which parts of the brain are active by detecting those that are using most oxygen.
We asked Carol to imagine playing tennis — to think about swinging her arm back and forth, a volley here, a drop shot there. We wanted her to imagine she was playing tennis as if her life depended on it.
In one way, it felt like total madness. But we had found that when healthy volunteers imagined playing tennis while in the brain scanner, they all activated an area on the top of the brain known as the premotor cortex. This is involved in preparing to make limb movements.
Now, with Carol inside the scanner, something amazing was happening. Whenever we asked Carol to imagine playing tennis, she would activate her premotor cortex just like the healthy volunteers.
We then asked Carol to do something else — to imagine walking around her home. Our research had shown that when people imagine moving through a familiar environment, it stimulates activity in part of the brain called the parahippocampal gyrus.
In July 2005, Carol had been hit by two cars while crossing a busy road. A moment’s distraction had redefined the rest of her life. She had repeatedly been tested by neurologists and diagnosed as vegetative. But was she?
We wanted Carol to visualise the furniture, pictures, doors and walls.
When we told her to walk from room to room, her pattern of brain activity was identical to that of healthy volunteers.
It really was like magic. We had found her. I was ecstatic.
It may seem odd that we didn’t just blaze ahead, scanning Carol daily to find out what her world was like. Unfortunately, that’s not how science works. When we’d applied to the ethics committee to do the research, we hadn’t even considered the possibility of finding a conscious person and, if so, what we’d do about it.
Our only way to push the science forward was to stick to the strict protocols we had established. With Carol, our stated goal had been to detect consciousness, not engage her haphazardly in a tête-à-tête.
Carol’s family was never told we had detected a conscious mind in her. Would they understand that although we had made contact, right now that was all we could do? There was no cure, no solution and no way to communicate with Carol on a regular basis.
In the end, it wasn’t my decision. As a research scientist I had no authority to interfere. If her family was going to be told, it would have to come from her doctor, who in this case decided that telling them would not clinically benefit Carol.
I disagreed. I remembered Kate. She had experienced some improvement in her condition after her family learnt of her positive scan, possibly perhaps because her care had become more intense and personal. But that wasn’t enough to convince Carol’s doctor. It was heartbreaking.
Carol was returned to her home town. I never saw her again. But now, we had the tantalising prospect of being able to communicate with a vegetative patient: to ask questions and receive answers — crucially, to ask if they were in pain.
Kate’s recollections of her vegetative episode are harrowing. ‘They said I couldn’t feel pain,’ she wrote to me. ‘They were so wrong.’ A raging thirst often gripped her that she couldn’t signal.
Sometimes she would cry out. The nurses thought it was a reflex. Kate had even tried to take her own life by holding her breath. ‘I couldn’t stop my nose from breathing,’ she wrote. ‘My body didn’t seem to want to die.’
In 2012, with a patient called Scott, we had our first chance to break properly into this silent world. On December 20, 1999, he had been driving across an intersection when he was hit by a police car heading to a crime scene. The impact slammed his brain against the inside of his skull.
I met him 12 years later. I had just moved to Western University in London, Ontario, in Canada, where I now run a lab that specialises in assessing patients who have sustained acute brain injuries. I had contacted Bill Payne, a doctor at the city’s Parkwood Hospital long-term-care facility, to ask if he knew of any patients who might be suitable for our studies. Scott was first on Dr Payne’s list.
‘His family is convinced he’s aware but we’ve seen no signs of it,’ he said.
Scott certainly looked vegetative to me. We could never produce any kind of physical response from him. We asked him to look at a mirror held up in front of him — nothing. We asked him to touch his nose — nothing. We asked him to stick out his tongue. Nothing.
As he lay in the scanner, one of the scientists on my team, Davinia Fernández-Espejo, and I went through the routine. ‘Scott, please imagine playing tennis when you hear the instruction.’
I still get goosebumps when I remember what happened. On the scanning screen, Scott’s brain exploded in an array of colour. He was indeed 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.
Brain scanning (file pic) technology is advancing rapidly. The day will come when we can detect awareness at the bedside (or even at the roadside) – reliably, cheaply and efficiently.
What now? What should we ask? Davinia and I looked at each other nervously. We badly wanted to push things to the next level, to ask Scott something meaningful.
We had talked a lot about the benefits of asking a patient whether they were in physical pain. But what if Scott said yes? The thought that he might have been in pain for 12 years was too horrible to contemplate. How would his family react?
I asked Davinia: ‘Do you think we should do it?’ She replied: ‘We have to.’ Scott and his family deserved it. It was time to do something that might actually benefit one of our patients.
I stood up and walked slowly out of the windowless scanner control room to where I knew Scott’s mother, Anne, was waiting. My mind raced. ‘We’d like to ask Scott if he is in any pain, but I’d like your permission.’ She replied: ‘Go ahead. Let Scott tell you.’
We posed the question: ‘Scott, are you in any pain? Please imagine playing tennis if the answer is no.’
We could see Scott’s inert, mummy-like body in the scanner’s glistening hollow tube. Davinia and I watched the screen intently. We had come a long way technologically since studying Kate almost 15 years earlier.
Back in Cambridge in 1997, we were using a PET (positron emission tomography) scanner that tightly restricted the number of times we could scan a patient, because for each scan we had to inject them with a potentially harmful radioactive isotope. We would also have to wait a week, or more, for the results.
But with Scott in 2012, the results appeared on the computer screen before us almost instantly. In 1997 our ‘results’ consisted of a bunch of numbers on a page but now we had a screen showing a 3D reconstruction of the patient’s brain, so lifelike you felt you could touch it. On this image, ‘brain activity’ in the form of brightly coloured blobs was painted.
Scott was responding — by imagining playing tennis. More important, he was answering ‘No’.
When I told Anne the news, she was remarkably blasé. ‘I knew he wasn’t in pain,’ she said. ‘If he was, he would have told me.’
On that day, and on many occasions in the months that followed, we conversed with Scott through this magical connection we had made between his mind and our machine.
He was able to tell us he knew who he was, he knew where he was, and he knew how much time had passed since his accident.
We asked if he liked watching hockey on TV. Before his accident, he had been a hockey fan. His family and carers would tune his TV to a hockey game as often as they could. But more than a decade had passed. Perhaps he’d watched so much hockey he couldn’t stand it any longer?
I’d heard about a patient who loved the pop star Celine Dion. But she only owned one Celine Dion album. Fortunately for her, she recovered. When she did, her first words to her mother were: ‘If I ever hear that Celine Dion album again, I will kill you.’
Thankfully, Scott said he still enjoyed watching hockey.
However, he died in September 2013 of medical complications from his accident. This is an all-too-common outcome. All that lying around exposed to the army of viruses, bacteria and fungi that populate every hospital ward deadens the immune system.
It shocked my team. We had never had a real conversation with him, yet 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.
Scott let us into his world, and we laughed 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.
Brain scanning technology is advancing rapidly. The day will come when we can detect awareness, where it exists, at the bedside (or even at the roadside) — reliably, cheaply and efficiently. We will be able to find those patients who are there, contact them and assess their wishes. Whether we can act on those wishes is, however, an entirely different matter.