Sometimes you read a story that is too astonishing to believe. “Just imagine. You hear, see, feel and think but no one can see that,” wrote a Belgian man whose mind had been trapped in a paralyzed body for twenty-three years – unable to communicate to his family that he was not a vegetable. The story of Rom Houben, a former engineering student and martial artist paralyzed and comatose after a car crash over two decades ago, leapt into the news last November and, at first, appeared too incredible to be real. You see, the forty-six-year-old Houben had been recently diagnosed with locked-in-syndrome – a rare neurologic condition in which the brain’s impulses (intentions to act, speak, etc.) are blocked from reaching the rest of the body. Here’s what else you need to know about locked-in syndrome; the vast majority of cases are due to a stroke in a very specific area of the brain (the pons) in which damage is usually detected within days to weeks by an MRI scan. These patients usually can still move their eyes and use them to communicate. If you saw the movie The Diving Bell and the Butterfly you are familiar with how this can work.
Thus, several aspects of Houben’s situation made him unique among locked-in patients; he suffered an accident that caused severe, generalized head trauma rather than a stroke with surgically-precise effects; he was not properly diagnosed for over twenty-years; and he uses faint finger movements – rather than eye movements – to guide the hand of a speech therapist to keys on a keyboard. It is this final difference, the use of what is called “facilitated communication,” that triggered a round of media skepticism. That’s because facilitated communication has ample potential for abuse. According to James Randi, a blogger specializing in de-mystification, the facilitated communication process is a “very intimate participatory action...and tests show that it is a complete fraud, farce, and delusion!” Art Caplan, a prominent bioethicist at University of Pennsylvania, is also dubious; “Sadly,” he wrote in a column for msnbc.com, facilitated communication “has been shown time and again to be unreliable. There is something of the ouiji board about the whole thing.” Shortly after this commentary emerged, communication from Houben and his family abruptly ceased – fueling speculation – too incredible to be true?
But wait, before we write off this story as a farce, consider the circumstances of Houben’s diagnosis. Houben was studied by Dr. Steven Laureys of the Coma Science Group at the University of Liege. Laureys’ evaluation was rigorous – quite different, for example, than Senator Bill Frist’s video-based pronouncement, back in 2005, that Terri Schiavo was not in a persistent vegetative state. Dr. Laureys put Houben through a series of tests, including a functional MRI. What the heck, you may ask, is a functional MRI (fMRI for short)? It’s a specialized brain MRI that creates a visual representation of areas of increased oxygen use in the brain – demonstrating, in essence, which parts of the brain are actively thinking or performing. The “functional” piece of the study is usually teased out by having the patient perform a specific task – such as tapping pictures on a screen (much like the iPhone app “Bugs”) – the areas of the brain being used to identify the picture and tap it will then “light up” on the fMRI.
In Houben’s case, the purpose of the fMRI was not to look for activity in specific areas of the brain, but rather to look for evidence of any activity at all. Apparently, and the specifics are murky because Laureys and his team have yet to publish the details, Houben’s brain activated in many areas of the cerebral cortex. This is pretty solid evidence that he is awake and that his brain is working, at least to some degree. It was these fMRI findings, then, that led to the attempt at facilitated communication – and its seemingly miraculous results. Without more details and access, it is impossible to know how much of Houben’s communication is real, but it does seem likely that he is awake. And, it also appears likely that his doctors missed this fact for over twenty years. The implications are potentially immense.
There are an estimated 15,000 patients in this country who have been diagnosed as being in a persistent vegetative state. Small studies have estimated that as many as 40% of such patients may have some minimal brain activity. But, are some of these patients fully awake – fully aware that they are trapped inside a body that doesn’t move? My guess is probably not – that Houben’s case, if real, is extremely unusual. But, nonetheless, there are those who may use the Houben case as justification for never removing life-sustaining support – even in a case like Terri Schiavo’s in which there was clinical (seven neurologists) and radiographic (a CT scan showing a severely atrophied brain) consensus of a persistent vegetative state. In a health system in the fast lane to bankruptcy, how many resources should be spent on sifting through thousands of Terri Schiavo’s to find one Rom Houben? This is not an easy question to answer – but it is one that needs to be addressed. To learn more, lock back in to this column in a couple weeks.