Among the untold thousands of patients living in U.S. nursing homes and believed to be in a vegetative state following a severe brain injury, more than 40 percent are, in fact, minimally conscious – aware on some basic level but unable to easily show it. The misdiagnosis rate had severe implications. It meant thousands of families each year were making end-of-life decisions based on bad information. And it meant that insurance companies were systematically denying rehab for tens of thousands of patients who had the potential to recover.
Plenty has written about end-of-life decisions, especially after the Terri Schiavo controversy a decade ago, but almost nothing has been written about the possibility that some seemingly unconscious patients might be aware, or that they could benefit from physical therapy. The national conversation around these issues had seemed to focus exclusively on the futility of life in a vegetative state, failing to consider the nuances of consciousness and the potential for recovery.
The minimally conscious state became a formal medical status nearly two decades ago, yet, few have ever heard of it. Families in crisis don’t know to be skeptical of a vegetative diagnosis, because they don’t know there’s an alternative, and as a result, patients who have an outside chance to recover never get a shot at it.