REQUEIM FOR THE HELPLESS

Now we truly are engaged in a great civil war, not a war of swords, bullets or bayonets but a war of ideas, of the rights of the disabled, the handicapped and the helpless vs. someone else’s decision about what quality of life means. Ragged Edge, an online publication that is a voice for the disabled has numerous learned articles regarding Terri Schiavo and the condition she was in.

One of the biggest controversies it seems to me is the issue of Terri's capacity to think or to be self aware, to have "consciousness". Was she aware, was she able to process thoughts, was she sentient? The vast majority of those on the so called "right to die" side stated that she was not, and because she was not it wasn't like we were "killing" somebody as opposed to "allowing" her to "die with dignity." As you, gentle reader may guess, this is a bunch of hogwash. Let us take a look at the "right to die" meme that has supported many of those who state pulling the feeding tube was in Terri's "best interest."

1. She was not allowed to "die." Life was taken from her by judicial decree. In fact, the order stated that she was also not to be given anything by mouth; food or liquids. So, even if she could perhaps swallow, that chance was not to be given.

2. This was nothing like the right to die with dignity, this was a circus.

3. There was no written documentation that Terri exercised her "currently legal" right to make a choice in whether she wished to be maintained or not. The only indicators were the testimony of her husband, brother and sister in law. Hearsay at best! I can think of no other case in which hearsay testimony in a live/die situation would be allowed. Hearsay would not be allowed in a capital case, so why now?

4. Terri was in a "Persistent Vegetative State (PVS)." - PVS is a medical diagnosis fraught with controversy. She is not in PVS as we shall see.

The Term PVS was coined/popularized by Jennet and Plum (Jennet, B., & Plum, F., 1972, Persistent Vegetative State After Brain Damage; A Syndrome in Search of a Name, Lancet, April 1, 1972) is certainly controversial to say the least. Also from the Lancet "There are different approaches to management, and clinical decision-making is further complicated by difficult moral and social questions." Indeed, it is the moral question that has raised so much controversy. Chris Borthwick capably demolishes the Jennet and Plum:

The authors were conscious of the difficulties of providing external proof of internal mental states. Qualifications appear throughout the article; "as best as can be judged behaviourally", for example, the cerebral cortex in these patients was not functioning. One problem is that at the margin the behavioural characteristics that denote consciousness are minute. The authors were in fact particularly concerned to differentiate the condition from locked-in syndrome, named by Plum and Posner in 1965, which is a ìtetraplegic, mute but fully alert state where patients are entirely awake, responsive, and sentient, although the repertoire of response is limited to blinking, and jaw and eye movements. (Jennett & Plum, 1972, p. 736)

If: "in a patient with decerebrate rigidity the eyes are open and may blink to menace, but they are not attentive." (Jennett & Plum, 1972, p. 734)

then: "Few would dispute that in this condition the cerebral cortex is out of action." (Jennett & Plum, 1972, p. 734)

If the eyes, however, blink on order, then the cerebral cortex is not out of action. The ability to control one muscle is decisive. A number of questions thus arise. There are medical conditions that affect eye control; could these be combined with locked-in syndrome to produce a presentation identical to PVS? There are conditions that involve only intermittent eye control; can we be sure that the doctor will be at the bedside at the applicable time?

An extensive set of physical signs are said to prove cortical dysfunction; one further observation, that of purposive eye movements, does not modify or add to the diagnosis but rather overturns and reverses it completely; how much weight can we under these circumstances attach to the claimed undisputed consensus? Jennett & Plum go on to discuss specifically the issue of behavioural imputations of consciousness.

....there is a group of patients who never show evidence of a working mind. This concept may be criticised on the grounds that observation of behaviour is insufficient evidence on which to base a judgement of mental activity; it is our view that there is no reliable alternative available to the doctor at the bedside, which is where decisions have to be made. (Jennett & Plum, 1972, p. 737)

The reasoning embodied in this paragraph deserves close attention. Decisions have to be made, they say, and must be made on the available evidence, however inadequate. One response might be to ask what decision the doctor is making at the bedside. What actions are to depend on a diagnosis of unconsciousness? First, however, we must note that Jennet and Plum are not at the bedside, and that a decision to incorporate unconsciousness into a clinical definition may require other arguments than practical necessity. It is surely illegitimate to reason, as here, that
- we have insufficient evidence to make a judgement;
- but we must make a judgement; therefore
(and this term in the argument is implied only)
- we must have sufficient evidence,
and therefore
- we do have sufficient evidence.

If observation of behaviour is in fact insufficient evidence on which to base a judgement of mental activity, then it surely remains insufficient whatever the demands made on the individual practitioner. [NOTE: Emphasis added]

And there we have it, video of Terri Schiavo definitively showed tracking of objects. She was NOT in PVS according to the definition of PVS by the very people that popularized the term.

But this is only part of the problem. What happens to the remaining populace that have not provided a written living will? What happens to people when there is controversy as to what their wishes were? What happens to the severely brain compromised, helpless when someone somewhere wants to take their life? Has a precedent been set? Must someone prove senescence in order to keep some court somewhere from condemning their loved one to death?

Two thoughts on consciousness:

"Perhaps the last stronghold of autonomous man is that complex “cognitive� activity called thinking."

----B.F.Skinner in Beyond Freedom and Dignity.

As Rene Descartes noted:

"Cogito, Ergo Sum." (I think therefore I am)

Perhaps the right to die folks corollary is "Nullus sententia haud vox ut vita." (No thought, no right to life.)

Have we come to this? Is it now OK to starve/dehydrate the ones we believe are the useless, unloved, unwanted, and helpless among us?

From The Ragged Edge again:

We are left with this question: After Terri Schiavo, what about the rest of us? It might not seem a serious question, or the correct one. But it seems, from what we've read, that to many severely disabled people it is the overriding question.

This is not idle speculation from the disabled, this is getting to be a life or death matter for many. "How silly," some may say. But they are not the ones facing the possibility that society will adopt an attitude of "euthanasia" for the useless that the "pull the tube" crowd seem to be heading for. In fact, it is the disabled that are MOST concerned. As Josie Byzek notes in "Articulating our perspective to progressives"

We had a contract to get severely disabled people out of institutions and there was this one guy they'd park across from my desk. Talk about vacant stares! I always said, "Hi, Henry," when I saw him and one day he said "hi" back. I jumped and spilled my coffee. That was the first time I saw how wrong we can be about whether severely cognitively disabled people are "there" or not.

My experience with Henry is practically a rite-of-passage experience in the disability rights movement. I hope it explains why many of us don't think nondisabled people know enough about our lives to determine whether we should live or die. It was nondisabled medical professionals who told our agency not to waste time with Henry, as he wouldn't know anyway."

Let me repeat part of that: "I don't think nondisabled people know enough about our lives to determine whether we should live or die."

At the university where I teach, we have a number of disabled professors and a number of disabled students. No one is currently thinking about euthanasia for them, but are we headed in that direction? England has already had a case of late term abortion because of a cleft palate. Death due to disability.

Many of the currently functioning disabled are professors, students, reporters, therapists, judges, pundits, and many of them were in very severe straits when they first became disabled. Through rehabilitation, they function once again. Not better functioning, not worse functioning, different functioning!

Are the currently helpless future fodder for a political movement? Will a slightly different rendition of the Association's Requiem for the Masses become popular in the future?

"Black and white was the question that so bothered him
He never asked he was taught not to ask
But was on his lips as they buried him.... WHY???"

Posted by GM Roper at April 2, 2005 09:03 AM | TrackBack