Attempting to give patients in a locked-in syndrome “their voice back”

By Dave Andrusko

Dr. Adrian Owen

Dr. Adrian Owen

Before I started writing this post, I checked to see how many times NRL News Today had written about Dr. Adrian Owen, who is a Canadian Excellence Research Chair in cognitive neuroscience and imaging based at the University of Western Ontario’s Brain and Mind Institute. Today’s post will make 16 stories about the author of the new book, Into The Gray Zone: A Neuroscientist Explores the Border Between Life and Death.

Here’s how summed Wendy Leung of the [Canadian] Globe and Mail newspaper described what he does:

Dr. Adrian Owen has devoted his research to reaching out to patients with serious brain damage who exist in a murky state of consciousness.

But to what end? Here’s Dr. Owen’s own explanation in his final answer in a Q & A with Leung:

The goal I’ve really been pursing in 20 years is to try to return some autonomy and decision-making to patients wherever possible. I see family members making incredibly hard decisions about whether to, for example, withdraw life support in the neurointensive health unit.

Given that we now know there are patients who we used to think were incapable of making those decisions, who may well be capable and may well want to make that decision, what I’m trying to do is develop technologies and use neuroscience to try wherever possible to give that voice back to these patients.

You want to read the entire interview, so let me just highlight some of the strong impressions I came away with.

First, Dr. Owen and his associates were way ahead of the curve in bringing to our attention that all severely brain-injured patients are not the same. Someone in a coma (a transitory condition) is not someone in a so-called “persistent vegetative state,” which people unfortunately keep shortening to “vegetative” (which can go on for decades) is not someone in a “locked in” situation (where the patient outwardly resembles someone in a PVS but is “cognitively fine,” yet have “physically lost all movement to their body or typically they can just retain eye movement or eyebrow movement”).

So it was one thing, 20 years ago when Owen found that the brain scan of a woman supposedly in a PVS showed that her brain responded to photos of familiar faces. But it was quite another when this led him (in Leung’s words) to “develop techniques – using brain-scanning technology – to determine whether patients are conscious, and eventually to communicate with some of them who are.”

But it was still another when Owen found (over time) that one in five patients typically labeled “vegetative or non-responsive” actually “can see, hear and understand what’s going on around them, but are unable to communicate with the outside world.” That finding meant that Owen would encounter “his share of skepticism” (it’s dismissed an “automatic response”).

Second, the bulk of the Q&A, understandably, talks about specific cases and how Owen and his colleagues use electroencephalography (EEG) and positron-emission tomography.

The two biggest takeaways (in my opinion) are these.

First, what about the other 80 percent?

There are two ways of answering that question. One of them is just drawing on parsimony [being very conservative] and saying, as far as we know, they are what they appear to be. That is, they are in a vegetative state. Their brain is just operating on autopilot. They breathe, they swallow, they blink, but they have no awareness of who they are.

The other answer I can give you is that perhaps some of them are not in that situation. Until 10 years ago, we thought 100 per cent of vegetative patients were exactly as I described, completely unaware. And now we know that’s not true for at least 20 per cent. Scientifically, there are very good reasons that number could go higher.

Ten years ago, 0% considered aware. Now, 20% or potentially considerably more. Food for thought.

A second major takeaway from “Q&A: Some unresponsive patients see, hear and comprehend more than previously thought”– they are kind of bystanders to their own lives.

One of the things most of these patients complain about, they don’t tend to recover and say, “I really missed seeing my children grow up.” They say, “I really missed the sense of control. Every single decision was made for me. Every single light switch that was turned on, every time I was fed, every time the TV channel was changed, that decision was made for me. I had no control of my life.” [Underlining added.]

Perfectly understandable. But, although it is not discussed in this post, that does not mean these patients “wish I were dead.” In a paper published last year, a Swiss research group “described a computer interface that can decipher the thoughts of LIS [Locked-in Syndrome] patients,” Michael Cook reported. “Contrary to expectations, the question ‘Are you happy?’ resulted in a consistent ‘yes; response from the four patients. It was repeated over weeks of questioning, so it was no fluke. The lead author, Niels Birbaumer, added:

“We were initially surprised at the positive responses when we questioned the four completely locked-in patients about their quality of life. All four had accepted artificial ventilation in order to sustain their life, when breathing became impossible; thus, in a sense, they had already chosen to live. What we observed was that as long as they received satisfactory care at home, they found their quality of life acceptable.”

At the risk of stating the obvious, all of this has enormous potential to redirect the rush-to-judgment to “assist” LIS patients “to die.”

Congratulations to Dr. Owen and his colleagues. You can read an excerpt from his new book at the Globe and Mail.