Rom Houben is Belgian who was misdiagnosed to be in the state of COMA after his near-fatal car crash in 1983.  Doctors presumed he was in a vegetative state following the accident and they believed he could feel and hear nothing.

Dr.Steven Laureys, a neurologist from University of Liege, in Belgium carried out a brain scan using state-of-the art scanning system and discovered that Houben’s brain was fully functional.

According to Laureys and his colleagues at Liege’s Coma Science Group found that 41 percent of patients in a Minimally Conscious State (MCS) were misdiagnosed as being in the much more serious Vegetative State (VS).

Patients in MCS occasionally show they are aware of their environment, for example moving to face a doctor when asked, but only infrequently.

“Differentiating the vegetative from the minimally conscious state is often one of the most challenging tasks facing clinicians involved in the care of patients with disorders of consciousness. Misdiagnosis can lead to grave consequences, especially in end-of-life decision-making.” added Laureys

One probable reason for the high rate of misdiagnosis is that doctors often base their diagnosis on observations of a patient’s behavior, rather than assessing patients using standardized tests. This has been stressed by Caroline Schnakers, one of Laureys colleagues.

Ideally, state of consciousness can be diagnosed through the use of the Glasgow Coma Scale is a standardized test that classifies a patient’s motor, verbal and eye response on a graded scale. It was widely used until about 2000 to classify a patient’s level of consciousness, but Schnakers says it may contribute to misdiagnosis.

Schnakers’ group used JFK Coma Recovery Scale-Revised (CRS-R), which is standardized for detecting signs of consciousness in someone recovering from a coma. It’s very sensitive and avoided a lot more misdiagnosis than the Glasgow Coma Scale.”

Diagnosis can be further complicated by another condition, called Locked-In Syndrome. Much less common than VS or MCS, patients in a locked-in state are totally aware of their environment but have minimal reflexive movements, typically only being able to blink their eyes. Houben has been in believed to be in the locked-in state.

“He was conscious for a long time, but it’s difficult to know for how long,” said Schnakers. “Maybe he had a period of VS, but you wouldn’t know how long it lasted, even if you ask a patient how long they were in VS or MCS.”

At the moment, Rom communicates by typing on a special keyboard attached to his wheelchair, and aided by his carer.