Reprieve for Baby Emilio
Ah, the power of good lawyers and public scrutiny. After going to court, attorney Jerri Ward, attorney for Baby Emilio's mother, just informed me that the Children's Hospital of Austin has agreed not to remove life support until April 10. And good for the people at the hospital for being flexible enough to continue to try and work these matters out. But note this quote from a committee member:"This care is medically inappropriate," said committee member Michael Regier. "The aggressive care that this infant is receiving is causing suffering, harm to the infant and without clinical benefit, and that should be discontinued."
Note that Mr. Regier is essentially claiming that continuing to live is not a clinical benefit. That turns the ultimate purpose of medicine on its head.
The Texas Futile Care law must go.
Labels: Baby Emilio. Futile Care Theory
posted by Wesley J. Smith @ 4:19 PM
14 Comments
14 Comments:
I think they just got tired of the phonecalls.
The operator at the hospital sounded quite harried when I called, and got flat-out pissy when I asked about the kid.
The Austin American Statesman quoted the hospital spokesman as saying this morning that no one had notified them about the pending Temporary Restraining Order or asked for an extension before the reporter told him about the press release.
Wesley, the ultimate purpose of medicine is not to keep people alive at all costs. We are to heal when possible, but to "First do no harm."
In this case, we are not healing. We are forcing the child to continue breathing by machine while his lungs stiffen, while he seizes, his brain and other tissues die from the original disease.
The progression of multi-organ failure is predictable after a certain point.
The Texas Right to Life lobbyists repeatedly told me this afternoon that in Emilio's case, as well as in the changes that would come from passage of HB 1094 is for the current treatment level to be continued until brain death.
LifeEthics: Whatever the Right to Life statement was to you, it isn't his or her call. This isn't a right to life advocacy event.
If someone wants care to continue until death, that is part of medicine. To say that maintaining life--when that is wanted by the patient/family-is doing harm or is not a proper medical act, is to undermine medicine at its core. Palliating suffering, maintaining wellness, etc. are also parts of medicine, and important parts. But doctors do not have the right to say when someone else's life is not worth living. That isn't a medical judgment. That is a value judgment. And value judgments belong with patients/family.
I'm recommending Gilbert Meilaender's article in First Things, "Living Life's End," from May 2005, to my readers.
http://www.firstthings.com/article.php3?id_article=194&var_recherche=Living+Life%27s+End
There's a difference between allowing a child who is dying to die and allowing a child who is not dying to die.
No one that I know is arguing that Emilio is not dying - or that he could have died "naturally" from any number of past events if the doctors had not intervened. It is time to stop intervening.
There is also a difference between causing another to do his duty and forcing another to act against his duty because you very much want him to do what you want him to do.
I'm afraid I'm going to side with the hospital, especially as I respect Dr. Beverly (Life Ethics Org)dedication to the right to life so she would not take this lightly.
This situation of AGRESSIVE intervention being actually counterproductive differs from some of the other euthanasia or futile care cases. Terri Schiavo may or may have not been in the PVS described but profoundly disabled as she was, she required only long term maintenance care not agressive intervention. Therefore her death has put to risk all persons rendered unconscious or minimally conscious. Ditto that only age and multiplying ailments are sufficient to stop feeding. But this is a blank check to someone clinically dying put in the hands of loved ones who cannot see themselves to make a choice. With modern medicine, we can keep anyone pumping and oxygenated. We do that even for the dead when they have donated organs. With this child's stage of the syndrome, even this will not be possible since the lungs are not responding well and multiple organ failure is imminent.
We therefore risk making a mockery of our position. Only the technicality that insufficient time and options remains. The hospital has agreed to give that time. Unless this family has unlimited resources they want to expend on fighting death, there is no real choice
I've always been of the position that ventilator use is one of those things reasonable people can disagree on. I'm a little surprised at the rather strong idea that the doctors have a _duty_ to discontinue ventilator use in this case. I myself might agree to its discontinuation were I the mother, but it seems to me enough of a grey area that I'm surprised to see some pro-lifers more or less implying that the doctors are something close to _obligated_ to stop using the ventilator. I'm not usually a big advocate of grey areas, but in this case I think the position I'm sensing from Lifeethics is overly strong, as if the mother is not only fairly ignorant but also demanding that the doctors do something objectively wrong.
Robert, it is indeed possible to die on a ventilator. Even Dr. Beverly seems to be acknowledging that, though she thinks it wrong to wait until the child is brain dead to remove the ventilator. But the idea that "anyone can be kept alive forever with machines" just isn't true, as far as I've ever been able to discover.
Lydia: You hit the nail on the head. The issue is who should decide. And to support a usurpation of authority because we agree with one side or the other, is to impose our views on others.
Look at it this way: Is the mother's decision to maintain her baby's life so outrageous that it amounts to child abuse? Clearly not. That being so, doctors should be the doctors and the mother should be the mother. It is her call, just as it would be if she decided that under these circumstances, her child has had enough (which might very well be my decision, as well).
Lifeethics,
even *if* your belief that this latest case is one of physiological "futility" rather than something more troubling, we still have a problem with the statute.
Even given that interpretation, it means the hospital was free to abandon the hard, time-consuming work of helping a family member accept the inevitable, simply because they could do this instead.
And that "best-case interpretation" (my words) doesn't negate the real potential for abuse, especially using a term as nebulous as "futility."
Among the affidavits submitted by Jerri Ward was a statement by an activist with muscular dystrophy. His younger brother needed a vent at the age of 6 months. The doctors wanted to "pull the plug" and only relented after the mom fought hard for getting him trached.
Thanks to the lack of "futile care laws" at that time, that younger brother is now 24 years old.
You need to deal with our very real stories, which are definitely not unsubstantiated fears - too many of us have had medical professionals write us off, no doubt for very "compassionate" and "professional" reasons.
You must deal with the practical effect of eliminating any rational calculation of futility. That of course would be that no doctor, hospital or insurance would take any "hard cases" unless certain rights are waived by patient and/or family ahead of time. Hardly an advance in care or in rights.
Lydia, the duty I was talking about it the doctor's duty to act in his patient's best interests.
I'm a family doctor because I have always seen the patient as part of the family and (ideally and sometimes not so ideally) the family as integral of the patient's condition and health care. We do treat family members, even if we never see them.
However, when the family's needs conflict with the patient's, the patient's interest has to come first. The determination depends on whether it is true that, as the published report says, the baby is having increasing injuries due to the ventilator requiring painful treatments, more uncontrollable seizures and progressive spastic muscle effects, loss of brain tissue due to the disease and what I suspect is multiple organ failure (liver and kidneys) due to both his underlying cell malfunction and the lactic acidosis.
I just don't believe in conspiracies that would allow a deception to play out over a month.
It's shocking to me to see the use of the word "futile" brought up over and over - it's not in the law, at all. What's worse is the attack mode in the press - what Lydia calls "overly strong." Who would have ever thought that anyone would publish the names and phone numbers of a Bishop, accusing him of complicity of murder?
Instead of caring for the mother and the baby, the fuss and attention is on personalities and organizations. And we're being mocked by our traditional, non-pro-life counterparts. At the American Society of Bioethics and Humanities meeting last year in Denver, it seemed as though most of the sessions knocked the concept of conscience and individual rights that trump the community's.
I appreciate that Robert mentioned the long term and community effects. We're fighting the skeptics and unbelievers - not to mention those who claim to be believers yet feel the need to justify their complicity with abortion and push for embryonic stem cell therapy for their diabetic daughters, etc. The claims that nurses and doctors just want to empty a bed in the hospital make it harder to assert that ours are not just personal opinions, that they are matters of right and wrong. Not to mention that we don't come off as good Christians when we ally with someone who's reaction is to attack a Bishop and assume the worst of nurses and doctors.
Sorry for the length and for that goof with the link, above.
Sorry again - Lydia didn't call the press reports and the attacks overly strong - I meant that I'd use her term.
B.,
The medical records do not support many of your extreme claims regarding the Baby's condition. I am wondering where you are getting your information as your description of his condition has not been published in any paper. This leads me to conclude that somebody is violating HIPAA by giving you detailed information. (albeit it false and exaggerated information) Perhaps I should explore that possibility with the Office of Civil Rights of HHSC.
Moreover he is a candidate for a trach which is what we want so he can go to a pediatric nursing facility.
No one that I have seen has accused the Bishop of anything like what you are representing. If you are going to make such a wild accusation, I request that you back it up with a source. Otherwise you are coming close to committing defamation.
What I don't understand about this case is why the hospital administrators are not waiting until all the test results are available before making the decision to discontinue treatment. I suspect that they would be much more cautious if it were the child of affluent, highly educated, non-Latino Caucasians with good private insurance :-(
As the mom of a 16 month old DS, I don't know what decision I would make if I were in Ms. Gonzales' place. I do know that I would want to wait for all the test results and would seek multiple outside opinions as to the expected prognosis. What one set of doctors might consider to be a hopeless case another might view more optimistically.
Certainly there's precedent in the Andrea Clark and Haleigh Poutre cases that it's better to err on the side of preserving life!
Little Emilio and his family will continue to be in my prayers.
Crimson Wife, I think the problem is the trouble with the ventilator - the baby's new doctor says the lungs keep collapsing and leaking.
Jerri and I have continued this conversation at my blog, since she posted there.
I hadn't seen the comment about bringing in "the Office of Civil Rights of HHSC." until now. I'd like to reassure everyone that I'm not getting information from anyone at the hospital.
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