The miraculous case of the Belgian man who was fully conscious during the 23 years medical professionals thought he was brain dead should be a lesson to families to be wary of diagnosis of vegetative state, said a bioethicist.
"Ethical treatment decisions required as the result of serious injury or illness requires accurate medical information," wrote John Kilner, director of the bioethics program at Trinity International University in Deerfield, Ill., in an e-mail. "Hopefully this case can alert people to the fact that doctors and families must be careful not to jump too quickly to a diagnosis of 'permanent vegetative state.'"
The former president of the Center for Bioethics & Human Dignity highlighted that sophisticated testing is now available to give a more specific diagnosis on whether the patient has "locked in syndrome," is in a "minimally conscious state," or has other conditions that require different levels of support than a patient in a coma.
"Many patients have long been mistakenly to be permanently unconscious – in an unhelpfully named 'persistent vegetative states,'" wrote Kilner, who noted that referring to someone as "vegetables" can easily lead people to be thought of as sub-human and promote diminished respect and care for them.
According to Dr. Steven Laureys, the neurological researcher who discovered that the Belgian man, Rom Houben, was fully conscious but unable to communicate, as many as four out of ten similar patients may have been misdiagnosed.
Houben, now 46, was an engineering student when he got into a car accident that caused him to be unable to move any of his voluntary muscles, including his eye lids. Medical professionals had written him off as being in a coma when he in fact had normal brain activity.
Laureys, as part of his study on patients in comatose, conducted a brain scan on Houben and found his brain to be normal. The discovery occurred three years ago but the story was only recently known when Laureys, with the permission of Houben, released a scientific paper on the case.
"I screamed, but there was nothing to hear," Houben told the Daily Mail newspaper in an interview. "All that time I just literally dreamed of a better life."
"Frustration is too small a word to describe what I felt."
Houben called the day that the medical professionals discovered his real situation as his "second birth."
"I want to read, talk with my friends via the computer and enjoy my life now that people know I am not dead," he said.
Houben's story has caused pro-life groups to revisit the contentious case of Terri Schiavo, the American woman whose case divided the nation and politicians on how to treat someone diagnosed of persistent vegetative state.
Pro-lifers point to Houben's case as support for treating patients diagnosed with PVS more humanely and for conducting more tests on their physical and mental health.
Houben, who is still unable to move most of his body, now communicates with the help of a speech therapist who helps him move his hand to type out messages on a touch screen. He plans to write a book.