by Susan Brinkmann, OCDS
Staff Writer
In a debate that once surrounded the true condition of the late Terri Schindler Schiavo, a new sixteen-month study of patients with consciousness disorders found that 41 percent of people who were in a minimally conscious state were misdiagnosed as being in a vegetative state.
Researchers from the University of Liege in Belgium tested 44 patients diagnosed as being in a vegetative state (VS) based on the commonly used JFK Coma Recovery Scale-Revised (CRS-R). Instead, they relied on “clinical consensus” provided by the medical staff’s daily observations. The result was 18 – or 41 percent – of the patients diagnosed as being in a vegetative state (VS) were actually in a minimally conscious state (MCS).
Joseph Giacino of the JFK Rehabilitation Insitute in New Jersey, who created the first diagnostic criteria for MCS along with his colleagues, said the findings are concerning.
“We may have become much too comfortable about our ability to detect consciousness,” he said. “I think it’s appropriate for there to be some level of alarm about this.”
The two states are indeed difficult to distinguish. A person in a VS can breathe on their own and have normal reflexes, but have no awareness of their surroundings. A person in a MCS can communicate to some extent, feel pain and even experience some emotion. The problem is that the MCS can be intermittent and make it difficult for the clinician to tell apart unless testing is done repeatedly over time.
However, making the right diagnosis is critical. Not only because it affects the type of treatment a patient receives, but it can also be crucial in end-of-life decisions for families because the chances of recovery are much greater for MCS patients than for VS patients.
In addition, many states, such as Florida where Terri Schiavo was ultimately starved and dehydrated to death in 2005, have laws that allow the cessation of treatment only for patients diagnosed to be in a vegetative state.
“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,” said researcher Steven Laureys from the University of Liege. “Misdiagnosis can lead to grave consequences, especially in end-of-life decision-making.”
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