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12/05/2009

Apples, Oranges, and Comas by Art Caplan

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Wesley Smith has a new column out,
in which he inappropriately uses the case in Belgium of Rom Houben to argue that somehow Terri Schiavo should not have
been permitted to have her feeding tube removed.

Smith argues that a case of locked-in syndrome is somehow analogous to the chance of recovery for someone in a PVS state post anoxia. I would like to have him find three neurologists who agree with that claim.

Terri Schiavo suffered anoxia to her brain–twice! her brain damage was confirmed while she was alive by CAT scan and then at autopsy. She was BLIND despite the alleged tapes that were made showing her tracking objects. Her cortex had shriveled to to half its normal mass.

To equate the discovery of Houben’s locked in state with the idea that this provides any reason to challenge Terri Schiavo’s diagnosis and prognosis is not
consistent with the facts and does a disservice to those who grapple with the treatment of loved ones who are in PVS states due to anoxia.

The argument about Houben, or at least my argument, is not that he might be conscious and his locked-in state misdiagnosed for many years but rather with the technique of faciliated communication that is being used as the way to ‘communicate’ with him. FC has been found to be unreliable by many medical and scientific groups. Worse it has a history of being misused in legal cases involving allegations of child abuse that have led U.S. courts to reject it out of hand. Time and again the therapist has been shown to be the source of messages when FC is used. Does Smith credit this technique?

The Houben–Schiavo analogy is completely bogus–they are apples and oranges. It is time for more experts in neurology and the brain sciences
to speak up about the way
in which the Houben case is being misused by those who are still trying to vindicate their erroneous views on the Schiavo case.

As a final point, it is important to point out that not only was Terri Schiavo in a PVS state with 100% certainty, but her husband could have directed her care to be stopped in the State of Florida even if she had been in a minimally conscious state or, for that matter, a 23 year locked-in state. No one is bound to accept medical care if it violates their religious or personal views about what they want from medical interventions. The fact that Wesley is arguing that Houben proves there was hope for Terri Schiavo neglects the core issue of the case–can a spouse direct care be stopped on the grounds that it’s provision violates the wishes and values of the patient.

Michael Schiavo insisted his wife would not want to be kept alive in a PVS state. Schiavo’s parents and siblings disagreed. But ultimately in Florida the view of the spouse trumps that of the parents/siblings.

With the fifth anniversary of Schiavo’s death approaching it is important to get the facts straight and not let ideology drive the ethical assessment of the propriety of
family and patient decisions about what they wish in terms of medical care whether at the end of life or at any other point in their lives.

Arthur Caplan, PhD

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