The Fevers

Stephen Carrier's point is very well taken. Unlike other areas in medicine where terms are more accessible, brain injury remains shrouded in mystery and is obscure to most. One mother of a child who sustained brain injury, herself a physician, confessed that neither she nor the child's father, who was also a doctor, had experience with brain injury. Even they were befuddled by the diagnostic categories. Indeed they were at a disadvantage because the treating physicians “assumed a lot more than we knew, and we didn't.”

Terms like coma, brain death, and persistent vegetative state are used with families with the assumption that they are understood. But in our experience, surrogate decision makers are unprepared for this technical language. The nomenclature is foreign and sometime oxymoronic. How can someone be brain dead and still alive? How is a coma different than the vegetative state? Why is a vegetative state patient unaware when their eyes are open and darting about? Such questions confound daily reality and our usual operating assumptions when dealing with each other.

Surrogates of patients with brain injury have no reason to have become familiar with the complex language that describes their loved one's condition after severe injury. It is not part of routine experience. Yet, clinical terms like coma are used by clinicians with the expectation that they are understood, a potential error in the wake of the Schiavo case in which familiarity with these terms could be mistaken for actual understanding.

Consider Lucy Busby*, whose child, Sharon*, was in the vegetative state. Asked about their understanding of the vegetative state, she responded, “… it was in our minds quite a bit probably because I think it was 2005, that whole incident with Terri Schiavo.” They “followed” that case when Schiavo had been described in the press as being in a variety of conditions, “… in either quote ‘vegetative state’ or ‘minimally conscious state,’ or ‘coma,’ – all those terms were being thrown around back then … so we were pretty familiar with what that was all about.”