BRUSSELS — A Belgian man wrongly diagnosed as vegetative for 23 years told The Associated Press Tuesday that the discovery he was fully conscious brought him a feeling of rebirth after decades of loneliness and frustration.
Car-crash victim Rom Houben was diagnosed as being in a vegetative state but appears to have been conscious the whole time. An expert using a specialized type of brain scan that was not available in the 1980s finally realized it and provided him with the equipment to communicate.
Houben told AP Television News that years of being unable to move or communicate left him feeling “alone, lonely, frustrated, but also blessed with my family.”
“It was especially frustrating when my family needed me. I could not share in their sorrow. We could not give each other support,” he wrote, punching the words letter by letter into a touchscreen with one finger held by an assistant at the ’t Weyerke institute in eastern Belgium. The 46-year-old Houben is now communicating with one finger and a special touchscreen on his wheelchair. “Just imagine," he wrote. "You hear, see, feel and think but no one can see that. You undergo things. You cannot participate in life.”
A leading bioethicist, however, expressed skepticism that the man was truly communicating on his own.
The therapist, Linda Wouters, told APTN that she can feel Houben guiding her hand with gentle pressure from his fingers, and that she feels him objecting when she moves his hand toward an incorrect letter.
Arthur Caplan, a bioethics professor at the University of Pennsylvania, said he is skeptical of Houben's ability to communicate after seeing video of his hand being moved along the keyboard.
"That's called 'facilitated communication,'" Caplan said. "That is ouija board stuff. It's been discredited time and time again. When people look at it, it's usually the person doing the pointing who's doing the messages, not the person they claim they are helping."
Caplan also said the statements Houben allegedly made with the computer seem unnatural for someone with such a profound injury and an inability to communicate for decades.
When Houben was asked how he felt when his consciousness was discovered, he responded: “I especially felt relief. Finally be able to show that I was indeed there.”
“Just like with a baby, it happens with a lot of stumbling,” he wrote.
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Re-examining similar cases
The doctor who discovered that Houben had been wrongly diagnosed said that he is re-examining dozens of other cases.
Dr. Steven Laureys, of Belgium’s Coma Science Group, said he has discovered some degree of consciousness using state-of-the-art equipment in other patients but won’t say how many. He looks at about 50 cases from around the world a year but none are as extreme as that of Rom Houben, who was fully conscious inside a paralyzed body. Many center on the fine distinction between a vegetative state and minimal consciousness.
He said Tuesday that: “It is very difficult to tell the difference.”
His studies showed that some 40 percent of patients with consciousness disorders are wrongly given a diagnosis of a vegetative state.
“It is clearly unacceptable. It is four times out of ten that they think the patient is in a vegetative state but in reality he is minimally conscious,” Laureys said.
Patients from Europe and around the world brought to his center in Liege for a second opinion go through and PET scans, MRI’s and a battery of other tests during a weeklong reassessment.
“Sometimes patients fly in and there is all this hope. But after the tests we have to confirm they are the opposite case from Rom and that there is no error,” Laureys said. “But that too helps the family accept reality.”
In Belgium alone there are some 350 patients diagnosed as in a vegetative state, he said.
Family kept believing
Over the years, Houben’s family refused to accept the word of his doctors, firmly believing their son knew what was happening around him, and gave no thought to letting him die, said his mother, Fina. She was vindicated when the breakthrough came.
“At that moment, you think, ‘Oh, my God. See, now you know.’ I was always convinced,” she said in a telephone interview with The Associated Press.
The discovery took place three years ago but only recently came to light, after publication of a study on the misdiagnosis of people with consciousness disorders.
While a 23-year error is highly unusual, the wrong diagnosis of patients with consciousness disorders is far too common, according to the study, which was led by Laureys.
“Despite the importance of diagnostic accuracy, the rate of misdiagnosis of vegetative state has not substantially changed in the past 15 years,” the study said. Back then, studies found that “up to 43 percent of patients with disorders of consciousness are erroneously assigned a diagnosis of vegetative state.”
The issue is fraught with difficult medical and ethical questions. Patients diagnosed as being in a vegetative state with no hope of recovery are sometimes allowed to die, as was done in 2005 with Terri Schiavo, the severely brain-damaged Florida woman at the center of the biggest right-to-die case in U.S. history. Her feeding tube was removed.
“It makes you think. There is still a lot of work to be done” to better diagnose such disorders, said Caroline Schnakers of the Coma Science Group.
Houben was injured in an auto accident in 1983 when he was 20. Doctors said he fell into a coma at first, then went into a vegetative state.
A coma is a state of unconsciousness in which the eyes are closed and the patient cannot be roused. A vegetative state is a condition in which the eyes are open and can move, and the patient has periods of sleep and periods of wakefulness, but remains unconscious and cannot reason or respond.
During Houben’s two lost decades, his eyesight was poor, but the experts say he could hear doctors, nurses and visitors to his bedside, and feel the touch of a relative. He says that during that time, he heard his father had died, but he was unable to show any emotion.
Over the years, Houben’s skeptical mother took him to the United States five times for tests. More searching got her in touch with Laureys, who put Houben through a PET scan.
“We saw his brain was almost normal,” said neuropsychologist Audrey Vanhaudenhuyse, who has worked with Houben for three years.
‘We continue to search and search’
The family and doctors then began trying to establish communication. A breakthrough came when he was able to indicate yes or no by slightly moving his foot to push a computer device placed there by Laureys’ team. Then came the spelling of words using the touchscreen.
Houben’s condition has since been diagnosed as a form of “locked-in syndrome,” in which people are unable to speak or move but can think and reason.
“You have to imagine yourself lying in bed wanting to speak and move but unable to do so — while in your head you are OK,” Vanhaudenhuyse said. “It was extremely difficult for him and he showed a lot of anger, which is normal since he was very frustrated.”
With so much to say after suffering for so long in silence, Houben has started writing a book.
“He lives from day to day,” his 73-year-old mother said. “He can be funny and happy,” but is also given to black humor.
Recently he went to his father’s grave for the planting of a tree.
“A letter he wrote was lowered into the grave through a tube,” his mother said. “He closed his eyes for half an hour, because he cannot cry.”
There is little hope that Houben’s physical condition will get better, but his mother said she refuses to give up: “We continue to search and search. For 26 years already.”
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