Three years ago, Dr Steven Laureys, a neurologist at the University of Liege in Belgium, examined a comatose 43-year-old Belgian patient, Rom Houben, who for the past 23 years had been assumed by medical professionals to be brain dead. Laureys, who runs a coma study group specializing in such cases, performed sensitive clinical and imaging tests on Houben and made a startling discovery: the former engineering student who suffered a brain injury in a car accident in 1983 was not in a vegetative state at all.
Nearly all of his voluntary muscles were paralyzed including those controlling eye movement but his brain functioned almost completely normally. He suffered from "locked-in syndrome," in which patients are aware of their surroundings but unable to communicate to the outside world. In the past three years, Houben has learned to talk through a computer: a language therapist traces his finger over a keypad and when it hovers over the desired letter, he contracts a muscle in his finger. He now has plans to write a book. "I screamed, but there was nothing to hear," Houben recently told a journalist through his computer. "So I dreamed myself away."
In the past week, Houben's case has raised numerous questions. How common are such diagnostic mistakes? How can they be prevented? Is Houben's communication method really accurate? In the still-evolving field of coma studies, where scientists probe the twilight at the cusp of consciousness, it seems there are few clear answers.
How did Houben's case come to light?
Over the past five years, Laureys and others have studied brain-injury patients classified as being in a persistent vegetative state (PVS). In such states, patients awake from a coma and return to a normal sleep cycle, but show no signs of awareness or consciousness. Laureys and others have found that around 40% of such patients are misdiagnosed. Most of these misdiagnosed patients fall under a classification called "minimally conscious," in which they show subtle but consistent signs of awareness. (The "minimally conscious" classification was only recognized in 2002 thanks to the work of sophisticated brain scans.) Houben is a very uncommon exception because he is able to think and reason normally most minimally conscious patients are severely brain damaged and unable to communicate. Laureys felt that Houben's case illustrated the difficulty of diagnosing brain-injury patients, so with Houben's approval, Laureys went public with his story.
Why are these kinds of misdiagnoses so common?
There are several reasons. Laureys and other experts have found that some PVS patients' brains may heal over time, although this is much more infrequent in injuries caused by stroke or cardiac arrest. And many patients are treated in long-term care facilities where they may not have access to specialists. If they begin to show subtle signs of awareness, they can often be missed by caregivers who have not been trained to look for them.
Doctors, too, sometimes fail to distinguish between PVS and minimal consciousness. PVS and minimally conscious patients are at high risk of infection and can be heavily medicated, which may affect their responsiveness when tested by doctors. Popular diagnostic tools may also be to blame. In a study published in the medical journal BMC Neurology in July, Laureys found that one of the main tools for assessing brain function in intensive-care settings the Glasgow Coma Scale does not perform well in chronic cases. Laureys wrote that PVS patients should be tested frequently using a standardized evaluation called the Coma Recovery Scale-Revised, which involves more thorough tests such as measuring patients' eye-tracking abilities by moving a mirror slowly over their faces. Laureys and other medical researchers are currently running a trial looking at whether PVS patients should also receive periodic "functional imaging" brain scans to further probe their level of awareness and cognition.
Why has Houben's method of communication caused controversy?
"Facilitated communication," as it's called, is a hotly disputed method. Studies on its use in autistic patients have shown that caregivers often in an earnest desire to help the patient are sometimes themselves controlling the typing. Some of the news footage of Houben appears to show him and his therapist typing on his computer screen with his eyes closed. Earlier this week, Arthur Caplan, a bioethics professor at the University of Pennsylvania, told The Associated Press that Houben's communication was "Ouija board stuff. It's been discredited time and time again."
Laureys defends Houben's communication technique, saying he has tested the accuracy of his messages by asking him to name certain objects without the help of his therapist. "The videos are very unfortunate and a very bad representation of his condition," Laureys tells TIME. "He was ignored for many years and now he's going through that again by people who make judgments based on the videos."
Are there legal ramifications for cases such as Houben's?
The distinction between PVS and minimal consciousness has caused legal problems for years now. High-profile cases most notably that of Floridian Terri Schiavo, whose husband ended her life in 2005 over the vehement protestations of Republican politicians demonstrate how emotional and legally contentious care for brain-injury patients can be. Such legal fights are likely to become more common as classifications of brain-injury severity are revised. But some medical experts say there are a more immediate concerns than end-of-life questions: "The figures [of misdiagnoses] are frightening but they are facts," Laureys says. "Without giving false hope to the families of permanently vegetative patients, it is obvious that there are many patients who have been incorrectly labeled as vegetative and who are languishing. We need to address that."