"Little Emilio:" Another Texas Futile Care Case
Should a hospital ethics committee be empowered to decide in secret to withdraw wanted life-sustaining treatment? This is the heart of what I call Futile Care Theory, a.k.a, medical futility, which is being quietly pushed into official policy throughout the country by the mainstream bioethics movement.
Texas has been ground zero for the futile care movement. In the late 90s, a group of Houston hospitals agreed to implement futile care theory and honor each other's futile care determinations. Under the protocols that were established, once a patient was voted by an ethics committee to no longer qualify to have their life maintained, the patient/family only had 3 days to find a new hospital to provide the care.
An attempt was made in the Texas Legislature to prevent this imposition of duty-to-die values. All that could be obtained was an extension from the 3 day limit to 10 days. Then Governor George W. Bush foolishly signed the bill, which he should have vetoed so that Futile Care Theory could be attacked in the courts.
Be that as it may, Texas hospitals are now seeking to move the agenda forward by actually depriving people of wanted care. The Andrea Clarke case was reported about extensively here at Secondhand Smoke. Now, there is a new case out of the Children's Hospital of Austin, in which an ethics committee is striving to remove "Little Emilio" from treatment. Little Emilio has been diagnosed, according to Ward, with Leigh's disease, which requires breathing and vitamin therapy. People with Leigh's disease have a limited life expectancy, generally 6 or 7 years, but can live longer. Little Emilio is 16 months old.
Attorneys Jerri Ward (who frequents SHS) and Joshua Carden have filed a request for a temporary restraining order to prevent the removal of life sustaining treatment. I will look further into this and report more when I know more.
Labels: Futile Care Theory
posted by Wesley J. Smith @ 9:27 AM
8 Comments
8 Comments:
I saw on pro-life blogs that this case has picked up steam and that the names are now published. Isn't Jerri blogging about it? I couldn't find anything on her blog or blogs.
One notable point in one of the stories I read: Apparently at one point there was something on Emilio's chart about stopping feedings, but that was caught and not actually done. I'd like to see what the evidence is for this. If so, it's very striking, because no doubt it's the respirator that will be most played up, with the implication (which was made by a commentator when this case was discussed before on SHS) that _all_ that is envisaged is withdrawing the respirator, whereupon tube feedings would be moot because the child would die very rapidly. But it sounds at least possible that they were going to withdraw tube feeding before withdrawing the respirator. If I have time later, I'll try to track down the link.
Here we go. Looks like it's for real and like the doctors have admitted to the MSM that there was a note on the child's chart about halting feedings:
http://www.statesman.com/news/content/news/stories/local/03/07/7emilio.html
I am waiting for more solid information. I will certainly keep an eye on this case, and will write to a broader audience if some facts are nailed down.
The ventilator itself is hurting Emilio.
Any one of the "leaks" from the lungs caused by the ventilator would have caused a "natural" death. However, the doctors have been forced to repeatedly resuscitate Emilio - the usual way to treat is with chest tubes or needles.
Lawyer Ward went to court today with a medical article from 1974 to support her contention that the hospital is not treating Emilio. "I don't know the hospital officials [sic] want to free up a hospital bed or cut costs by not administering treatment, or whether they just believe that they should be the final arbiters as to whose life is worth living."
(I've tried to explain some of the medicine on my blog - and totally avoided terms like Respiratory Chain defects or any figures showing the Kreb's cycle.)
Like I said, I am waiting for more facts to be nailed down. But these points are in the brief filed on behalf of Emilio's mother. 1) The diagnosis is not definite. 2) The desire is for Emilio to receive a tracheotomy and feeding tube, which would solve the problems you mention. There seems to be a controversy whether his condition would warrent this. And 3) in any event, hospital ethics committees should not have the power to decide these issues in behind closed doors.
No, the surgery will not solve any of Emilio's problems.
A tracheostomy will not solve the recurrent pneumothoraces, because it cannot change the tissue damage, the stiff airways, the muscle stiffness. The permanent feeding tube will not solve the lactic acidosis, the gut's inability to take up nutritions, the necrosis and lack of motility, or the liver and kidney malfunction.
The diagnosis is definite - the diagnosis of a syndrome is made according to certain criteria. What is not definite is which of the gene defects that can cause this syndrome has caused it in Emilio.
The most important diagnosis is progressive failure of ventilator therapy, with pneumothorax after pneumothorax, chest tube after chest tube to release the pressure and allow the lungs to re-inflate. As well as progressive necrosis of the brain and seizures 1/3 to 1/2 of the time.
The hearing was not behind closed doors. The Committee's report is not hidden. In fact, the Ethics Committee report has been published on line at the North Dakota Gazette.
I have attended these hearings and represented one woman who had enraged a doctor for refusing to remove a feeding tube from her husband who had Alzheimer's. For the patient/family, they can be quite daunting. The doctor knows the committee members. The members are mostly staff of the hospital and reflect the culture of the hospital. The patient/family member is often a lonely voice.
The decision making was made behind closed doors. The report was published. I have seen such reports be wrong in the past. I have been told there may be inaccuracies in this one. But like I said, I want to await facts.
But Emilio's case aside, refusing wanted life sustaining treatment should not be permitted to be imposed in this fashion. The "quality of life" ethical belief that is growing in bioethics makes it far too dangerous to disabled and other vulnerable people. Ditto, the issue of resources.
IF such decisions have to be made, they should be made explicitly on medical and not values issues. Secondly, the decision in dispute, if they are to be made, should not be made by ethics committees, which lack substantial due process protections. IF they are to be made, it should be based on physiological futility, not quality of life futility, and done by a court after an open and public proceeding.
But, as I said: We will await developments.
I wonder if the tracheostomy tube had been put in place when the mother wanted it a month ago (I seem to recall) if less damage would have been done by the ventilator. But that could be off-base as a conjecture.
In any event, I read the committee's report. No mention at all (unless I just missed it) of necrosis of the intestines or of inability to absorb nutrients. And I think they _would_ have mentioned these things if they were trying to justify withdrawing feeding. It sounds to me like that's "guesswork" not even supported by what the hospital itself is saying on its own behalf.
In fact, come to think of it (I read it several hours ago), I don't recall a mention of liver failure, either.
Nope. Just looked up "necrosis" and "liver" in the document, and no sign.
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