How to communicate with someone locked deep inside their own head

By Daniel Kitts - Published on September 19, 2016
a doctor attending to patient going for a brain scan
Adrian Owen prepares a patient for an fMRI brain scan. (Image via Western University)

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Adrian Owen and his team of researchers at Western University have gained worldwide attention for developing ways to communicate with patients in a persistent vegetative state – who are unable to speak or perceptibly react in any way to the world around them. For years, medical consensus held that these patients were probably in a state of deep unconsciousness.

But his work has revealed that some of them may have a rich internal life — and some of them can communicate given the right kind of assistance.

This month Western University received a $66 million federal grant to research ways of reducing the burden of brain disorders, and Owen’s team will be one of the beneficiaries. TVO.org spoke to Owen about his work, and what he hopes the funding will allow him to accomplish.

You’ve gained a lot of attention for finding ways to communicate with people who are in a persistent vegetative state. How have you managed to reach people believed to be unconscious and unresponsive for years? 

The story started in 1997, when we were the first group to put a patient who was supposedly in a vegetative state into a brain scanner. We showed the patient pictures of her friends and family and we were gobsmacked to see that her brain responded: it lit up in response. That really kickstarted what’s become a 20-year research program.  

three images of results of a brain scanNowadays we use a method known as fMRI, or functional magnetic resonance imaging. We put patients into the scanner, and we play them movies or sounds. And we use what comes back from their brain — the pattern of activity that we see — to deduce whether or not they are having the same sort of experience that you or I would if we were lying in the scanner, being stimulated in exactly the same way. About one in five of the vegetative patients that we see turn out to be in a kind of locked-in situation, where they are actually conscious and aware but simply unable to physically respond in any way.

We’ve been able to get these patients to respond to questions by activating their brains in certain ways, and this has enabled us to communicate with several of these individuals and find out a little bit about what it’s like to be locked inside your head, for sometimes decades at a time.

You were able to communicate with car accident victim Scott Routley in 2012. He had been in a persistent vegetative state for 12 years. How did his life change after that? (Routley died in 2013 due to complications from his injuries).

One thing we were able to do was to ask him some questions that improved his quality of life. Some of them were simple things, like “Do you like watching hockey on TV?”

One of the interesting things about this patient group is that they get exposed to an awful lot of whatever it is they used to like before their injury. If you used to watch a lot of hockey, then you’re going to get put in front of a lot of hockey games. If you used to like listening to Céline Dion, you’re going to listen to a lot of Céline Dion. So we were able to ask Scott some of those sorts of questions, because of course after 12 years maybe he didn’t like watching hockey anymore.

We were also able to ask him questions that I think might more directly affect his health or his well-being. We asked him a couple of times whether he was in any pain. And thankfully for everybody involved, he wasn’t. But obviously if he’d said he was then we would have been able to administer something to alleviate that pain.

More broadly, what happens in many of these cases where we discover that patients are conscious is that the care staff and sometimes the families change how they respond. I was just writing about a patient today, who really went from being a body to being a person again when we discovered she was aware and conscious. The family started reading to her, they started talking to her, they started visiting her more often, they started involving her in family activities like parties and gatherings — because they knew she was aware and she was witnessing all of these events. It hadn’t been at all clear [until then] that there was anybody there to really have these experiences. So I do think we can very positively influence people’s quality of life, and I do think Scott was one of those cases.

Did he still like watching hockey?

I think he did, actually.

I would imagine being conscious but unable to let anyone know I was conscious would be a kind of hell.

It is an extremely common idea — people think it must be the worst of all worlds. And of course it’s very difficult for us to know.

There are some pieces of scientific evidence that speak to it. One is a recent study that was conducted in Belgium, of patients who have locked-in syndrome. Now locked-in syndrome isn’t like being totally locked in — typically these patients can move their eyes or blink. But it’s about as close as you can get to being one of our patients. And it turns out when you ask these locked-in patients about their quality of life, they actually rate it about as highly as the rest of us.

I think we have to assume that some of these patients are able to sort of recalibrate their lives and find enjoyment and pleasure in other ways. I’m not for a minute suggesting that all of these patients are perfectly happy. But I think we shouldn’t necessarily jump to conclusions about their internal mental state based on how we think we would feel in that situation, because I think when you get there, it may be very different.

You’ve said there’s a possibility that patients in a vegetative state live a “rich and complex internal life.” Through your research, do you have any insight into what the internal lives of patients in a vegetative state are like?

It’s always been very surprising to me how cognizant they actually are of the current world around them. We were able to ask Scott questions, like did he know what year it was? And he did. We were able to ask him what year he had his accident. And he knew.

Other patients have been able to tell us things like the names of nephews and nieces that [were] born since they’d been in an accident. So I think for some of these patients, we have to assume that they are exactly like you or me, except they can’t move. They are basically experiencing the world around them. They will watch a movie and derive pleasure from the twists and turns in the plot. They will observe people coming and going. They will learn new pieces of information, like the names of the people around them.

 

The idea that people in a vegetative state are essentially unconscious has a comforting aspect: it allows those around the patient, their friends and family, to believe they aren’t suffering. In 2005, millions supported Michael Schiavo’s decision to have his wife Terri’s feeding tube removed, which ended her life.  If people in a vegetative state may have some degree of consciousness, what are the implications for how their loved ones — and the health care system — treats them?

It’s really important to not treat this population of patients as one group. Scott Routley was a very different patient from somebody like Terri Schiavo, even though they’d both been in a vegetative state for more than a decade. She’d had loss of oxygen to her brain for a long period of time. His brain was basically intact when you looked at it, and hers wasn’t. So I think one should just be careful not to make the mistake of saying “Well, you know, any of these patients could actually be conscious.”

How will this new grant advance your research?

The idea [is] to try and bring together many of the scientists at Western who are currently working somewhat independently on different disorders. For example, people like myself are working on traumatic brain injury; other people are working on things like Parkinson’s disease, Alzheimer’s disease or stroke. What this is going to allow us to do is bring these people together under one umbrella that we call BrainsCAN in order [to] really take full advantage of methods that may be applicable right across the board.

What do you hope your research will do for people in a persistent vegetative state? 

What we’re focusing on right now is to try and make their lives as comfortable as possible. That’s my immediate concern, because the technology for doing that is here, it works, we can do it. On a more broad level, I think it does change these patients’ lives — us giving them a voice. The third thing is we’re making quite a lot of progress at predicting who is likely to recover. And of course, I would like to perfect a so-called brain-computer interface, a tool some of these patients could use to communicate. I’m talking into the future now. But we and many other people are working very hard to try and make that future a reality.

This conversation has been edited for length and clarity.

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