For example, we’d ask, “Have you ever been to the USA?” or “Do you have any brothers?” or “Is your father’s name Alexander?” The patient managed to tell us where he’d been on holiday five years earlier and the name of his father — we verified everything with the family later.
BW: And what has your research revealed?
AO: We’ve discovered that nearly 20 percent of patients who are classified as being in a vegetative state, they are unresponsive in every way, are actually able to respond to questions. This shows they can hear and absorb information, and process that information to the point of formulating an answer, and communicating it.
BW: How do patients’ families and friends respond to the news?
AO: We’ve spent a lot of time with the patients’ families, and we ask them what they hope to get out of the procedure. Mostly they have come to terms with the idea that the patient isn’t going to recover, but they want to know if he or she is suffering, whether the patient can hear them when they recount family news, for example, or whether the patient can see a new visitor. And, amazingly, in 20 percent of cases we can give them an answer — yes, they can.
Usually it’s taken as good news. It might sound like a nightmare scenario to us, but in most cases we’re just confirming what the patient’s close family or friends suspected anyway. Most people who’ve sat by a patient for many years have a sense that there’s still some awareness, even though they have no evidence to prove it. People say, “He always knew when I was here,” and while I haven’t proved that this sense is generally accurate, it seems that often our findings validate suspicions that people already had.
The main thing families and friends want to know is what is going on. Can he hear me? Is she able to see her new nephew? These are the answers people want and, amazingly, in nearly 20 percent of cases, we can actually give them an answer.
BW: What value is your research for doctors?
AO: For families to know their loved ones can see or hear, for example, is emotionally important, but for doctors it’s about the patient’s overall well-being. Being able to ask basic yes/no questions to a patient could mean the difference between lying there immobile and in excruciating pain, and being given painkillers.
BW: So do your findings indicate some kind of error was made?
AO: No, although it might seem as though our research shows that some sort of misdiagnosis occurred, that’s not what’s happening. Some of the patients we’ve worked with appear to be entirely vegetative. They are completely locked into their bodies. We haven’t shown that not to be true — even after the patient has shown they are able to communicate via the brain scans or EEG, they remain locked into their bodies. So the doctor’s original diagnosis is as correct as it can be — we are simply able to produce new information that allows us to see abilities where no one could before.
And we can’t say with 100 percent certainty that the other 80 percent of patients we see are totally unconscious — it could be that they are unable to control that part of the brain relating to movement but can absorb information. Or it could be that the patient is deaf. How would we know that? There are so many reasons why a patient might fail our test that have nothing to do with whether they’re conscious or not. That’s why we don’t draw negative conclusions. We can only work with the information we’ve got, obviously, but that’s why with some patients it really isn’t a case of misdiagnosis, merely diagnosis based on the information you have.
BW: How soon will doctors be able to use this in hospitals nationwide or worldwide?
AO: One of the important things for us is to try and develop more simple ways to do this. MRI is very expensive. You have to bring a patient to the scanner, which means potentially transporting them over a long distance. EEG, however, is portable, so [it] can be taken to the patient. But it’s not a standard EEG — ours costs around $111,000, and it requires someone who’s got several years of experience to work on it. We’d like to do more research to develop a way that it can be used routinely, to be available to more people.
It’s a terribly exciting time. We’re getting closer to being able to make these tools widely clinically available, but it would also be wonderful to develop an apparatus people could take home to communicate with their loved ones. That’s what we’re working towards.
This article was first published in Brain World Magazine’s Spring 2013 issue.
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