A Belgian man who was thought to be in a coma for 23 years shared these feelings with a reporter today: "It was especially frustrating when my family needed me. I could not share in their sorrow."
At least, that's what his hand typed out on a touch-screen keyboard — a hand that was being cradled by a therapist.
I'm sure this isn't going to be a popular opinion, but I, for one, don't buy it.
The story of car-crash victim Rom Houben captured the world's attention Monday. Houben was diagnosed as being in a vegetative state for 23 years, but he was conscious the whole time, just unable to communicate that he was indeed in there.
An expert using a fancy brain scan finally realized Houben was alert and provided him with the equipment to communicate.
Now, he is talking to his doctors and family — and a parade of journalists — through a computer keyboard at a mile a minute, telling them that he has felt “alone, lonely, frustrated but also blessed with my family."
It's no wonder the case sparked worldwide horror and amazement. If Houben has been misdiagnosed as being in a permanent vegetative state, then how many other patients are in similar straits? If Houben could still be aware and thinking and now communicating flawlessly after two decades, then what does that have to say about how we deal with people in what medicine refers to as "permanent vegetative states?" And, now knowing this, would it ever be right to decide to stop medical support for someone who had been completely unresponsive for decades?
The consequences of discovering a fully lucid person, trapped inside his own body, thinking and feeling and loving after 23 years are enormous. But reading about the Houben case, I'm starting to have doubts as to whether this can all possibly be true.
Houben had originally been diagnosed as being incapable of any thought or communication due to a devastating brain injury.
The doctor who discovered that Houben had been wrongly diagnosed, neurologist Steven Laureys, who leads the Coma Science Group at the University of Liege in Belgium, found some degree of consciousness present in Houben by doing a sophisticated neurological scan on him.
Patients from Europe and around the world brought to his center in Liege for a second opinion get PET scans, MRIs and a battery of other tests during a weeklong reassessment.
Laureys said he looks at about 50 cases from around the world each year, but none are as extreme as that of Houben, who was fully conscious inside a paralyzed body. Still, he says, people in non-communicative states are misdiagnosed up to 40 percent of the time.
Most patients trapped inside their bodies while conscious have had a stroke that causes what is called "locked-in syndrome." According to experts I have talked to, this is a condition in which a patient is aware and awake but cannot move or communicate due to complete paralysis of the voluntary muscles of the body. The major cause of this horrible condition is a stroke in a key artery in the brain that causes severe damage to the lower brain and brain stem but not the cortex, where thought and consciousness reside. It is not clear how a car accident may have caused a locked-in situation.
Most troubling about the claim that Houben is communicating are the facts that he is doing so with the help of a therapist who points his finger to the keys on a computer keyboard.
The therapist, Linda Wouters, has told news reporters that she can feel Houben guiding her hand with gentle pressure from his fingers. She feels him objecting when she moves his hand toward an incorrect letter. But, given his injuries, Houben should not be able to generate any pressure in his fingers. And if he can do so, why did no one else detect this ability over the past 23 years?
The technique of having someone point your finger to a keyboard is called facilitated communication. Sadly, it has been shown time and again to be unreliable. There is something of the ouiji board about the whole thing.
Many experts have sent me e-mails noting that people have used facilitated communication with autistic children and other brain-damaged individuals but that it did not hold up. The Association for Behavior Analysis International (ABAI), the American Academy of Child and Adolescent Psychiatry and the American Association on Mental Retardation have called facilitated communication a "discredited technique" and warn that "its use is unwarranted and unethical."
Worse than solitary confinement
To add to my skepticism, Houben reportedly has been lying in a bed with relatively little stimulation and communication from others for 23 years. This is worse than being in solitary confinement for a very long time.
That kind of situation should have had deleterious effects on his mind. Imagine 23 years locked in to your own body with relatively little contact from anyone and no ability to communicate at all. Yet the news reports have him talking lucidly and with remarkable precision. There is little hint of anger or mental disturbance from what surely had to have been a hell-on-earth experience.
I hope that Houben was misdiagnosed. I wish him and his family only the best. But the issues involved in his case are so important and some of the techniques being used to claim that he is communicating are so suspect that we need to learn a lot more before simply accepting the fact that someone has survived a severe, paralyzing injury to the brain and 23 years later is sending moving messages through an aide who guides his fingers on a computer keyboard.
Arthur Caplan is director of the Center for Bioethics at the University of Pennsylvania.