Baby Emilio: Court Orders Treatment to Continue--For Now
Under the terms of Texas law, hospital ethics committees have the right to unilaterally vote to refuse wanted life-sustaining treatment. Known as "futile care theory" or "medical futility" or "inappropriate care," such refusals are permitted to be made on quality of life judgments, not just whether the desired treatment would work.
Because of this statute, Texas has become ground zero for futile care theory. Happily, several attempts to impose the law have been thwarted by public pressure. Now, a court has issued a temporary restraining order preventing Children's Hospital of Austin from removing Baby Emilio from life support. Doctors claim the boy is suffering, but note from the following quote in the story, they also say he has lost all higher brain functions:
Consider the lines I italicized: Life is what doctors assert is without "medical benefit." But to state that helping a patient continue to live when that is what the patient/family wants is not a proper purpose of medicine when the patient/family wants it to be extended, is to turn medicine literally on its head.Doctors and a hospital ethics panel determined the treatment is causing the boy to suffer without providing any medical benefit, said Michael Regier, general counsel for the Seton Family of Hospitals, which includes the children's hospital.
Emilio is believed to have Leigh's Disease, a progressive illness difficult to diagnose. He cannot breathe on his own, must have nutrition and water pumped into him, and can't swallow or make purposeful movements, Regier said. He said Emilio's higher order brain functions are destroyed.
I might not have made the same decision as Emilio's mother has, but that is irrelevant. This is a value judgment. Members of ethics committees should have no right to impose their values over those of patients and families.
Let us hope the Texas Legislature revokes Texas's misbegotten futile care law.
Labels: Futile Care Theory. Texas.
posted by Wesley J. Smith @ 2:35 PM
5 Comments
5 Comments:
Actually, Wesley, if you are honest, you will admit that the doctors object to maintaining bodily life **at any and all cost to him and his body.***
Medicine's purpose is not and never has been to keep someone alive at any cost. Life alone is not the highest value we hold - it is our love and compassion for one another.
Shame on you for repeating the implication that the doctors are "refusing" to save Emilio's life or "demanding" that he die. They've saved his life every day: each time they have adjusted the settings or ordered the maintenance of the ventilator, and certainly each time the lungs leaked and collapsed since February, not to mention the first time they intubated him.
Since someone gave the Ethics Report to the North Country Gazette, we know that Emilio suffered several episodes where his lungs collapsed due to the ventilator pressures necessary to keep his blood oxygenated. A pneumothorax causes damage to the lungs and is extremely painful, even after the chest tubes allow the lungs to reinflate.
However, if the mother and the lawyers had had their way, he would have had a tracheostomy back in February, when the lawyer first posted on this board, and about when the ventilator pressures were so high that the lungs were already leaking.
Instead of acknowledging that the doctors had a duty to Emilio to use their judgment in his best interest, they have been repeatedly accused of "refusing" to do so on this blog and worse on others, since the lawyer decided to go public.
While being accused of wishing to cause Emilio's death, the nurses and doctors are there at the bedside, repeatedly inflicting the pain and damage on that little body that his mother and you demand.
Lifeethics: Look: Ethics committees meeting behind closed doors should not have the right to dictate when wanted life-sustaining treatment ends. IF such decisions are to be made, they should be made in public, in the light of day, with a public record and the right to cross examine and appeal. I also don't trust your description of events.
Which part of my description of events don't you trust? That someone- the very doctors and nurses you accuse - is saving Emilio's life daily and more often? Or the reason that the doctors did not place the tube earlier?
Well, the Committee hearing was held in public, the testimony of several doctors was witnessed and recorded and reported.
Lawyers were there, Texas Right to Life was there.
Somehow, one of the bloggers got hold of the report. It's been on the internet for nearly a month.
The Ethics Committee Report is at the North Country Gazette, published in the same March 18th post by June Maxam that carried an accusation that the Bishop of the Austin Diocese "supports killing little Emilio Gonzales."
The report clearly lays out the medical history that prevented the docs from placing the trach, earlier. Please show this report to any doctor you know.
This is another shame: you say you don't trust me, and the Bishop was accused in such a way.
From my source close to the case: Emilio has never had a chest tube. NEVER!...Also, the amount of oxygen he needs has been decreasing. Finally, a noted pulmonologist gave us an affidavit confirming after a records review that Emilio is definitely a candidate for a trach.
The doctors at the hospital wanted to give him a tracheostomy until they diagnosed the Leigh's disease.
The accusation that the doctors decided not to be more aggressive because of the diagnosis is exactly the problem that makes me write here.
The increased difficulties with the ventilator would have been one more criteria to help make the diagnosis for the syndrome of Leigh's disease, as well as confirm that Emilio has an aggressive form of the disease.
Does your source say he never had leaks or a collapsed lung?
Is the Report at North Country Gazette a fraud?
The oxygen concentrations Emilio needs may have gone down, but have the pressures? If the pressures (or the end pressures of each breath)are still high, the trach will leak.
From what I'm reading from bloggers who have a friend who has a friend, etc., it sounds as though the chest muscles are getting weaker. That may allow the placement of a trach without leaking.
I'm not a proponent of turning off ventilators at some arbitrary date. I've always said that the agreement should be, "This much and no more." Instead of setting a date to "withdraw care," it would be better to agree not to do further invasive treatment, while maintaining the current level as long as it did not lead to new life threatening complications.
I would try to explain to the mom that we shouldn't add new technology, and that we should remove the ventilator if he has another pneumothorax that leads to a collapsed lung.
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