"Unspeakable Conversations"

Editor's note. Moments before this edition of TN&V was posted, I learned of the death of NBC's Tim Russert. A class act he will be sorely missed.

Sometimes coincidences are so eerie as to be creepy. There I was, as usual, in front of my computer screen when a little chime goes off signaling that I've just received an email.

The missive was from an old friend and it directed me to a fascinating website called "BioEdge." Its lead article was headlined "When the brain 'dies,' is a person still inside?"

Someone else had kindly sent me other material about the study discussed at BioEdge. Clearly word is getting around about Dr. K.G. Karakatsansis's remarkable contribution, "'Brain Death': Should it be Reconsidered?" that appears in the medical journal "Spinal Cord."

The BioEdge piece put Dr. Karakatsansis's work in the larger context of those scientists who believe "that at least some patients who meet the current criteria for brain death are still alive--even if they may never recover."

Dr. Karakatsansis's particular contribution is that what is often labeled mere "spinal reflexes" in people said to be brain dead "may in fact originate in the brainstem." (There are other reasons to be cautious, including the absence of a worldwide consensus on what "death" is and because "it is impossible to test whether brain functions are absent with a bedside examination because the brainstem is no longer connected to the cerebrum in these patients.")

But right underneath the piece questioning the validity of brain death criteria was a notice of the death of disability rights activist Harriet McBryde Johnson. Johnson was born with a degenerative neuromuscular disease that confined her to a wheelchair. She became famous as a dazzlingly articulate foe of "bioethicist" Peter Singer which reached the wider public in the form of a memorable op-ed Johnson wrote for the New York Times.

She instantly grabbed readers by the lapels with the opening paragraph of her "Unspeakable Conversations":

"He [Singer] insists he doesn't want to kill me. He simply thinks it would have been better, all things considered, to have given my parents the option of killing the baby I once was, and to let other parents kill similar babies as they come along and thereby avoid the suffering that comes with lives like mine and satisfy the reasonable preferences of parents for a different kind of child. It has nothing to do with me. I should not feel threatened."

At their debate, held in 2002, Singer responded that it was not at all fair to say that he wanted her dead. "He wants to legalize the killing of certain babies who might come to be like me if allowed to live," Johnson wrote. Note the next couple of sentences.

"He also says he believes that it should be lawful under some circumstances to kill, at any age, individuals with cognitive impairments so severe that he doesn't consider them 'persons.' What does it take to be a person? Awareness of your own existence in time.

The capacity to harbor preferences as to the future, including the preference for continuing to live."

There is no question that those labeled brain dead have likely suffered profound and in most cases irreversible injuries. Thus, for "bioethicists" such as Singer, it wouldn't make any real difference if the person were indisputably alive. (After all, babies born with disabilities are clearly alive and that has not stopped him from advocating that parents ought to have the right to kill them.)

But we can hope that the growing number of questions raised about the brain death criteria might raise the consciousness among those with warmer hearts. It might also help people develop empathy for patients such as Terri Schindler Schiavo, who was severely brain injured but not brain dead even under the questionable criteria currently employed.

Some of you may remember that Ms. Johnson wrote a brilliant op-ed for the Washington Post opposing Terri's death by starvation and dehydration.

"The whole society has a stake in making sure state courts are not tainted by prejudices, myths and unfounded fears -- like the unthinking horror in mainstream society that transforms feeding tubes into fetish objects, emblematic of broader, deeper fears of disability that sometimes slide from fear to disgust and from disgust to hatred," Johnson wrote. "While we should not assume that disability prejudice tainted the Florida courts, we cannot reasonably assume that it did not."

I encourage you to read Ms. Johnson's extraordinary account of her debate with Singer at http://query.nytimes.com/gst/fullpage.html?res=9401EFDC113BF935A25751C0A9659C8B63&sec=health&spon=.

You can also access her Washington Post op-ed defending Terri at www.slate.com/id/2115208.

Please send your comments to daveandrusko@hotmail.com.