Avid fans of medical thrillers may remember the 2007 film Awake starring Hayden Christensen and Jessica Alba. In the movie, Christensen’s character, Clay, suffers “anesthetic awareness” and finds himself awake and aware, but paralyzed, during heart surgery. As if the distress were not enough, Clay remains locked in his own body on the operating table as he slowly learns the horrific details of the doctors’ intention to kill him during the operation. Fortunately, Awake is a work of fiction, and anesthetic awareness occurs in only 0.1 to 0.2% of surgeries across the United States. Nonetheless, the experience is immensely traumatic and epitomizes helplessness that is, thankfully, beyond most people’s imagination. For one Belgian man, a comparable experience lasted not hours, days, or even weeks. In fact, life for Rom Houben, now forty-six, has meant lying trapped in his paralyzed body, aware of his surroundings, for the past twenty-three years. Houben’s story has gained much attention in both the medical world and in the media, as it is not only one of medical intrigue, but also one worthy of moral deliberation.
In 1983, Rom Houben was involved in a car accident that left him in a vegetative state, or so doctors believed at the time.1 Decades later, he was sent to Dr. Steven Laureys of the University of Liege in Belgium, where doctors use functional MRI to retest patients who were diagnosed as being in a vegetative state. fMRI, first developed in the early 1990s, traces the working of neurons by tracking changes in the oxygen levels and blood flow in the brain. The more brain activity in one area, the more oxygen will be used resulting in more blood flow to that area.2 Despite originally diagnosed as being in a vegetative state with an old technique called the Glasgow Coma Scale, a 15-point check list of eye and motor movements in response to questions, Laureys now believes Houben to be at least minimally conscious, a state “of semi-consciousness and limited self-awareness”, as suggested by evidence of activity from the brain scan.3 While a wrong diagnosis for such a long time is highly unusual, according to Laureys, “misdiagnosis of vegetative state has not changed in the past 15 years.”4 One reason for why disorders of unconsciousness are at times difficult to diagnose is that doctors differentiate between wakefulness and consciousness. Although individuals who are able to open and move their eyes are awake, to be deemed conscious, a patient must be able to feel and to process thought. Houben, doctors believe, may be “locked-in”, aware and conscious but paralyzed, and thus unable to communicate his condition.5
In November of 2009, Houben’s story once again captivated the world when he reportedly could communicate with a touchscreen and a speech therapist who waits for slight movements of Houben’s finger as an indicator to type. Facilitated communication, as the method is known, is highly controversial, as many argue it is the assistant, not the paralyzed patient, who controls what is typed. The story became more sensationalized after videos of Houben tapping away on a keypad with the assistance of his speech therapist surfaced. In fact, Houben purportedly typed “I shall never forget the day when they discovered what was truly wrong with me. It was my 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.”6 Shortly after, Houben’s mother claimed her son was writing a book about his experiences. Laureys, who remained skeptical of the results, decided to conduct a simple scientific test to determine the validity of the family’s claims. During the test, Houben alone was shown various objects and later asked to type their names with assistance. However, Houben was unable to identify any of the objects. What had been declared a “medical miracle” several months ago was quickly dismissed.7
When asked why he refrained from voicing any objections to or skepticisms about the method before the Houben family hired the speech therapist, Laureys defended himself with “it is important not to make judgments…the family acted out of love and compassion.” But did Laureys do the same? In fact, the neurologist with decades of experience was fully aware of the unreliability of facilitated communication, which many doctors liken to an “Ouija board.”8 Did Laureys silence his doubts out of “love and compassion” for the patient and his loved ones and to perhaps offer them hope about Houben’s condition? Regardless of what Laureys believe, however, false hope is nothing more than delusion, no matter how well-meant the intent may be. Tragically, the delusion for which Laureys is responsible cannot be easily dispelled. In fact, even after the conclusive test that persuasively discredited facilitated communication, Houben’s sister has vowed to continue with the futile method, as she now believes it to be a reliable way to determine how her brother is feeling. Houben’s family also bears no ill will towards the speech therapist, who still works with the patient and dismisses the accusation that she is a fraud.9 It is difficult to say how long Houben’s loved ones will remain in denial after this highly emotional and traumatic affair. Needless to say, however, Laurey’s indiscretion can only result in more pain in the long run when Houben’s family finally leaves behind the wild hope that seemed so close to reality.
1, 6 Hall, Allan. 2009. “‘I Screamed, but there Was Nothing to Hear…’” The Daily Mail. http://www.dailymail.co.uk/news/worldnews/article-1230092/Rom-Houben-Patient-trapped-23-year-coma-conscious-along.html
2 Peck, Peggy. 2009. “The Top 10 Medical Advances of the Decade” ABC News. http://abcnews.go.com/Health/Decade/genome-hormones-top-10-medical-advances-decade/story?id=9356853&page=1
3, 5 Cox, Lauren. 2010. “Words of Man Thought to be ‘Vegetable’ Were False” ABC News. http://abcnews.go.com/Health/WellnessNews/words-man-misdiagnosed-vegetative-state/story?id=9912685&page=1
4 Associated Press. 2009. “Man Says Emergence From ‘Coma’ Like Rebirth” MSNCB. http://www.msnbc.msn.com/id/34109227/
7 Hamilton, Jon. 2010. “Story of Book-Writing Coma Patient Debunked” NPR. http://www.npr.org/templates/story/story.php?storyId=123813455
8 Smith, Rebecca. 2010. “Coma Victim was Not Really Communicating, Say Doctors” Telegraph. http://www.telegraph.co.uk/journalists/rebecca-smith/7274179/Coma-victim-was-not-really-communicating-say-doctors.html
9 Charter, David. 2010. “Dangerous Delusion of Recovery: Rom Houben” The Australian. http://www.theaustralian.com.au/news/health-science/dangerous-delusion-of-recovery-rom-houben/story-e6frg8y6-1225837144766