Monday, November 23, 2009

Hope is a Double-Edged Sword: Man With Locked-In Syndrome Misdiagnosed

In the early 1980's, Rom Houben, a Belgian 20 year-old, was in a horrific car accident.  He was in a coma, and then diagnosed as being in a persistent vegetative state.  For 23 years, his family refused to accept his diagnosis and insisted he was conscious and aware of his surroundings.  Finally, with advances in brain scan technology, doctors were able to more thoroughly examine his brain and determine it was essentially normal.  Over time, they were able to help him communicate using a single finger and a keypad. 

Houben wasn't in a vegetative state at all, but rather suffering from "locked-in syndrome," a state where he was able to hear and feel and understand, but unable to move or speak.  The medical journal article that detailed his story estimates that up to 43% of people diagnosed as being in a vegetative state are actually conscious.

I'm sure this case will be the subject of much political debate.  The news coverage is rife with mentions of Terri Schiavo, the Florida woman whose husband's battle to remove her feeding tube made its way all the way to the United States Congress.  I acknoweldge that this case raises ethical questions, and I also acknowledge that I am completely unqualified to discuss them.

This story also raises questions for the families of those diagnosed as being in persistent vegetative states.  On the one hand, accepting the reality of their loved one's situation is important, regardless of what people decide to do about it.  Holding out unrealistic hope can trap people in the common trauma reaction of feeling like the situation isn't real.  On the other hand, if this study is accurate, about 4 times out of 10, it truly isn't real.

This story is very encouraging to those left behind by traumatic accident victims in vegetative states.  I truly hope that as many of them can be "unlocked" as this story predicts.  I just worry about the 6 out of 10 situations or more where this research will prevent survivors from accepting reality.


Colleen said...

If 43% of those Dx'd with persistent vegetative state are actually conscious...then I would think that _all_ relatives of the people with it should be pushing for a good brain scan. Can you imagine the nightmare for those who are conscious but unable to communicate?????

This tells me that we can't trust the diagnosis without doing the high tech scans, first!

How expensive are they, though? And when is the right time to do them? Do they need to be repeated?

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Naomi Zikmund-Fisher
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