The Diving Bell and the Butterfly : A Memoir of Life in Death

I loved this little book when I first read it a couple years ago. Its author, Jean-Dominique Bauby, dictated it letter-by-letter by blinking his left eye. He suffered from locked-in syndrome after a stroke affecting his brain stem, and the only movement he had remaining was his left eye. He died just two days after the book was published.

The Diving Bell and the Butterfly : A Memoir of Life in Death

A woman, Kate Adamson, who's been testifying to the excruciating pain she suffered when her family permitted the removal of hydration and nutrition suffered a similar stroke to Bauby's. She, too, was a victim of lock-in though she eventually recovered. She is a strong activist for stroke victims and apparently an effective motivational speaker, but her testimony is irrelevant on the Terri Shiavo case except perhaps as an example of misdiagnosis. She and Bauby had a rich internal life without cognitive impairment. Their cerebral cortex was okay, it was the brain stem that was affected. Patients in the persistent vegetative state have fully functioning brain stems.

Now, the Terri Shiavo case has enough ambiguity of its own, appearance of conflict-of-interest and of possible bias in diagnoses, that there's no need to add confusion about lock-in and PVS.

Even Dr. Cranford sometimes lumps the two together. Notice the beginning of his Minneapolis Star Tribune OpEd referenced below:

Just a few decades ago cases of brain death, vegetative state, and locked-in syndrome were rare. These days, medicine's "therapeutic triumphs" have made these neurologic conditions rather frequent. For all its power to restore life and health, we now realize, modern medicine also has great potential for prolonging a dehumanizing existence for the patient.

Although, Cranford leaves lock-in behind in the remainder of his editorial, there's no question that he regards it as a dehumanizing existence, perhaps a candidate for withdrawal of nutrition and hydration as PVS and Alzheimers are for him. Kate Adamson's testimony is very relevant in response to him in that case.