Sunday, March 27, 2005

Terri, Feeding Tubes and Life Support

The Terri Schiavo saga is almost done, the Almighty Courts have spoken, and we can begin what one would hope to be a mercifully short post-mortem on the issue itself. I have two thoughts on this, regarding mainstream media treatment of the matter, and then about the nature of end-of-life law itself.

First- media performance. Once again, the Big Media coverage has been lousy, and it is almost impossible to tell if it is the result of pure incompetence and laziness or promotion of its standard position- scientists and rationalists versus the dogmatic and ignorant religious zealots. The truth is almost certainly a combination of the two.

The most obvious example is the constant characterization of Mrs. Schiavo as a vegetable on life support, essentially described that way by ABC News in its push-poll a week ago. This matches the willful ignorance of my favorite lefty friend, who has variously scolded me in the last week for promoting lawlessness, insensitivity to "states rights", immorality for supporting a president who signed a Bill in Texas that permitted a level of cost analysis to be incorporated into "pull-the-plug" decisions, and of promoting heroic artificial life-extension measures for accepting what he repeatedly referred to as "artificial nutrition and hydration" to keep her alive (his final comment was: " hey a lump of cancer is alive... lets feed that too"- this sensitive statement gives you an idea of the real attitudes of some of the far left on these matters). Regarding the latter point, he revealed that he is just as confused about this as every lazy network "reporter" out there. If you polled the public on this subject, you would likely find that a large majority is sure that Terri was being fed either intravenously or by a tube stuck down her throat, and with respiratory and circulatory assistance as well. Wrong.

When I was in nursing school (I have a current license which I earned when I was deputy principal investigator on clinical trials while managing operations for a small medical device company; I now work in the support area for an academic medical research facility), I took care of patients like Terri. People who were demented to varying degrees, from loss of short term memory all the way to total unawareness of surroundings, incontinent, and immobile. We would awaken them in the morning, get them cleaned up and dressed, administer morning meds, then get ready for breakfast.

I had one particular patient who took all his nutrition and hydration through a percutaneous endoscopic gastrectomy (PEG) tube, just like Terri. Folks, do you know what that really is? It is a funnel, into which you pour Ensure- just because it is easier to do it that way than to spoon-feed. Period.

It is used in two types of situations: 1) the patient has trouble swallowing, or 2) it is simply a lot easier on the nursing care staff and more efficient to feed the client that way. There is nothing wrong with any of the GI tract- the stomach works just fine, the intestines absorb nutrition totally normally. And, regarding the swallowing difficulties, any person who has ever spent any time around a long term care facility knows that up to half of the residents have trouble swallowing, so all of their liquids are mixed with thickeners to make them more viscous and easier-to-swallow.

So Mrs. Schiavo had a fully functioning cardiac system, and a fully functioning GI tract. Her "life support" consisted of being fed by use of a funnel to dump in the most common over-the-counter "instant breakfast". Yet the Big Media types seem to have done their best to obfuscate reality, by never explaining the PEG tube, in fact, they seem to have gone out of their way to suggest that a "vegetable" was getting D20-plus-lipids through some kind of intravenous infusion. The reality is that, if Terri had been given to custody of some other party, the twelve-year-old kid next door could have fed her just fine. No significant infection issues, no special medical problems.

There is no question that the mischaracterizations of her physical (not mental) condition fed a public impression that was quite different from reality. Why? Couldn’t those advocating death for Mrs. Schiavo make the case honestly? One wonders. Especially given the behavior of ABC and the Washington Post regarding that mysterious talking points memo never tied to any Republican lawmakers, handed to them by Democrat staffers, yet somehow reported as a Religious Republican Right Manifesto. (update- this memeo actually turned out to have been created by a legislative assistant to Sen. Mel Martinez, so we can leave out the "Democrat conspiracy" and simply note that ABC still did not perform well before that source was reveaed)

That brings us to the second point. One can have a variety of views on what should have been done in this case, what the trial judge did and should have done, whether or not Congress should have acted, and so on. There was a lot of unseemly preening and posturing on both sides, from those who favor the Netherlands "duty to die" euthanasia philosophy to those who seem to believe that they need to take care of God’s business here on earth for Him because He cannot take care of the souls of the fetuses and neglected unles the activists are there to scold us on His behalf.

Who, besides God, knows which side is right? The key is that the record shows that the trial court made a lot of rulings it didn't have to make, for reasons we don't understand- perhaps the judge is upset that his judgement is being questioned, etc. In a case like this, we need laws that leave egos at the door and opt for the best expression of morality. We need 50 state laws that say:

1) If a patient is in such a non-communicative state, but the major organ systems function normally, so that there is no artificial respiration or circulatory support, or and the gut will absorb nutrition, and
2) if there is no written legal document of at least the same evidentiary (Statute of Frauds, for contract matters) level as we require to buy a $500 item of hardware,
3) if there is a dispute among the family over the inferred wishes of the patient, and
4) a first order relative is willing to take on the custody, care, and support of that patient, then:
- the system should "err" on the side of life. That does not apply if some family member wants the patient alive but desires that the government pay for it all; if we are pro-life, pay the price, personally. If the patient is left as a ward of the state, the Florida-type law can be used to deal with the situation.

My own experience tells me that this has probably been hopeless all along, but the law failed miserably in its duty to Terri Schiavo to protect her from those who-let’s be blunt- wish her ill. If a doctor messes up a terminal cancer case that costs a patient a possibility of 20% chance of recovery instead of sure death, the patient wins 20% of the award in a malpractice case.

The Solomonic solution was there all along for those with a moral compass- let Michael have his divorce, let the Schindlers try 6 months of intensive rehabilitation therapy to confirm the mental state insofar as we can. And leave the rest of us out of the private family matter. A minister friend of mine was the police chaplain who counseled Mrs. David Mack after her Minneapolis police officer husband was shot and in an extended coma- then, suddenly woke up and lived five more years, awake and alert. My memory of that case, and the talk then about the futility of the situation haunts me now.

Moral considerations are difficult- but one thing far worse than making the wrong decision is ducking the moral consequences of the debate. If we are going to avoid the head-first dive down the slippery slope, we need some changes in law, now.

38 Comments:

Blogger Sue Bob said...

Excellent post. Particularly since you are coming from a base of knowledge about feeding tubes.

March 27, 2005 at 8:38 PM  
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