Fight over baby's life support divides ethicists

[RamboLiberal]

Source: CNN

<snip>

Emilio is 17 months old and has a rare genetic disorder that's ravaging his central nervous system. He cannot see, speak, or eat. A ventilator breathes for him in the Pediatric Intensive Care Unit at Austin Children's Hospital, where he's been since December. Without the ventilator, Emilio would die within hours.

The hospital contends that keeping Emilio alive on a ventilator is painful for the toddler and useless against his illness -- Leigh's disease, a rare degenerative disorder that has no cure.

Under Texas law, Children's has the right to withdraw life support if medical experts deem it medically inappropriate.

Emilio's mother, Catarina Gonzales, on the other hand, is fighting to keep her son on the ventilator, allowing him to die "naturally, the way God intended."

<snip>

The law, signed in 1999 by then-Gov. George W. Bush, gives Texas hospitals the authority to stop treatment if doctors say the treatment is "inappropriate" -- even if the family wants the medical care to continue. The statute was inspired by a growing debate in medical and legal communities over when to declare medical treatment futile.


Read more: http://www.cnn.com/2007/HEALTH/04/25/baby.emilio/index.html

---

Not a choice I'd want to make. But to me Dubya is such a hypocrite after the stunts he and the Repukes pulled over Terri Schiavo case. They didn't give a damn about Schiavo - it was all about playing to their base. And btw where are the fundies on this one - are any of them standing in protest outside this hospital? Where's Hannity - has he moved his show to Texas?

[provis99]

1. i don't get the mother's position

if she wants her son to "die naturally", then why is she having him artificially kept alive on a ventilator? That's the exact opposite! To let him die naturally as God intended would be to take him off the ventilator.

[VegasWolf]

27. Exactly. The mother's perspective is logically "absurd". nt

[Igel]

2. This case has been kicking around for a while.

But this is one of the more insane things I've read today (not the most insane, by any stretch of my imagination):

'Emilio's mother, Catarina Gonzales, on the other hand, is fighting to keep her son on the ventilator, allowing him to die "naturally, the way God intended."'

I think the proper response would be, "You know, that ventilator isn't usually considered natural, so if you want your son to be allowed to die naturally, throw this switch here to turn it off."

[Gormy Cuss]

3. I'd have to agree with the ethicist.

But Dr. Lainie Ross, a pediatrician and medical ethicist at the University of Chicago, says she thinks Emilio's mother, not the doctors, should be able to decide whether Emilio's life is worth living. "Who am I to judge what's a good quality of life?" she said. "If this were my kid, I'd have pulled the ventilator months ago, but this isn't my kid."

I think the mother isn't ready to let go yet. It's a tough decision.

on edit: as contorted as the thinking may seem to most of us, I think the mother is saying that the availability of life-sustaining devices is part of God's plan, therefore it would not be natural to take the ventilator away. Poor woman really is struggling to come to grips, it seems.

[Lance_Boyle]

5. Who is paying for the futile care

while the mother prepares to "let go?" I think those people should have a say, too, once it is clear that continued care is futile.

[angstlessk]

6. So, by your standard, only rich people should get care?

[pitohui]

7. wow, where's that coming from?

this person can't eat, think, or even breathe or even freaking see and there is no prognosis or treatment that this can ever do anything except get worse

a person of conscience wouldn't torture a damn dog like this but it's okay to do it to a baby?

people suck, while this mother is dithering around making it all about her not being ready to let go, this baby is being subjected to an existence that none of us would be willing to tolerate

this isn't about "only the rich should get care," this about it's simply a horrible thing to do to a helpless human being just so some hospital can get paid and some so-called mother can continue to deny reality, i really don't care if they're paid by a rich relative or by medicaid or who, this is a bad thing to do to another human being

i sure as hell wouldn't want this done to anybody i cared about, i honestly don't understand people

while they're being all understanding about the mother for the last 17 months, this baby has been in hell with no hope

[sandrakae]

9. Whatever wrote this, is not human. No wonder you don't understand people.

This woman loves her child. How dare you talk about her this way.

[ends_dont_justify]

15. That makes them a better species, then :)

Human beings are so bitchy and selfish they'd allow a baby to suffer when, the point clearly stated, they wouldn't allow a dog to suffer like this.

How dare YOU talk about someone ELSE that way? They're a lot less at fault for having an opinion than making someone suffer, an infant, their child, suffer.

There should be licenses for becoming a parent, seriously.

[pitohui]

17. she doesn't love her child from all the evidence, she hates this child

i would hope that anyone who did this to me would have the honesty of soul to admit that they hated and resented me

this woman is torturing this child

sorry, love is an action, not just a word

i judge people based on deeds not by how pretty they cry on teevee

if she loved this child she wouldn't want him trapped in hell forever w. no chance of getting better to feed her own need for attention

[Miss Chybil]

13. If, God forbid, you ever have a child in this position, you will be able

to handle the situation the way you believe is right.

[ends_dont_justify]

14. Bravo!

People are so bitchy about rights they forget they inadvertently support things that they then turn around and condemn if it happens to go against their political views. Glad you said what you did, rights are less important than stopping suffering.

[laylah]

11. Delete...dupe

[laylah]

12. Until you walk a mile

in Mom's shoes, you have NO right to judge! No one does!

[Javaman]

25. Ergo, you are judging Lance_Boyles opinion.

you are no better.

[Gormy Cuss]

16. Futile care decisions should not be made by bean counters.

That appears to be what's happening in many cases in hospital. With all of the money they are spending keeping this child alive it's a shame they hadn't earmarked a few more bucks to counsel the mother on the hopelessness of her son's condition. Eventually she will accept it. She may accept it sooner with guidance.

[Lance_Boyle]

22. I am certain there is 'counseling'

or some sort of consultation service for the decision-maker. Hospitals even provide clergy for this purpose, in addition to counselors, clinical ethics consultants, and the treating physicians with intimate knowledge of the condition. I would not consider "insufficient information" to be the issue in this mother's decision to extend futile care indefinitely.

You are correct that "eventually she will accept it." The issue that must be addressed is how much money *that could be used for treating viable patients* will continue to be thrown down the futile treatment hole until "eventually" rolls around. This particular decision-maker, the mother, is in control of scarce resources, and is squandering them selfishly.

[Gormy Cuss]

23. Ah, but neither of us knows that such counseling has been offered.

As to money used for other patients, consider that much of the Medicaid budget goes for the care of those who require nursing home care, most of whom have no prospect for improved quality of life, many with progressive dementia. Why not withdraw care for them too? Isn't that throwing money down the futile treatment hole too?

Add to that the fact that a sizable number of the Medicaid beds in nursing homes are occupied by formerly middle class people who transferred their assets in order to avoid paying for their own care, and I'd say the cost of maintain this toddler is trivial compared to the legal abuse of the Medicaid system.

[Javaman]

26. I just want to know when moron* is going to fly to washington to sign

a bill to allow this kid to live??? Where are the protesters? where are the hand wringing sign carrying nut cases that swear this kid recited the Gettysburg address just last week?

I get so tired of living in an alternative universe.

[Gormy Cuss]

28. No kidding. n/t

[tandot]

4. What do "pro-life" right-wing fundies say about this: Treatment is paid by Medicaid

Most of them are only "pro-life" as long they (with their taxes) don't have to pay for it.

[saracat]

8. What a very sad story. Obviously the mother is not well educated but she is well intentioned.

I really am not sure what one should do in this pickle but I think the decision should probably be with the hospital as the mother clearly does not understand what "natural " is. Sigh.Very sad.

[hedgehog]

10. This story appeared here several weeks ago.

If I recall properly, this is the only child this woman will ever bear. I can understand why she doesn't let go.

There are some experimental treatments out there. Maybe she's hoping if she hangs on long enough, her child will be cured.

There are kids today who are completely cured of cancers that meant a quick death 10 or 20 years ago. There are adults living with cystic fibrosis for the first time ever. FOr many parents and even adult patients, each day is a new choice between continuing the fight and letting go.

The odds are, this child will sooner or later be beyond the aid of a ventilator. Considering how much we spend each day in Iraq, what's it costing us to keep one small child alive a little longer? Maybe we can't help him, but we can help his mother.

[pitohui]

18. why is "helping" the mother avoid reality more important than the child's chronic pain?

i would not be willing to kept alive in pain, unable to understand, see, eat, or breathe, merely to feed someone else's ego

how can a mother ask that of her child? i guess she assumes that the child cannot feel (altho the hospital says he can) and that it's all about "her"

[bleedingheart]

20. my neighbor's daughter was dying from brain cancer

the woman was 40 years old...she fought the disease but when it traveled to her lungs...she started to really weaken but because her mother was just terrified of losing her...she kept fighting for her mother's sake even though in her own mind she knew she would die..

what broke my heart was hearing her brother tell me that the day before she died...she was on a ventilator to help her breath...and she wrote down some simple words for her mother and father...."is it okay if I go"...and her parents knew that she was just worn out from fighting...and they realized that she wanted to stop....and the told her that she had their blessing...and they took her off the ventilator that night and she left this world..

it makes me cry typing this...

and even though her mother told her to let go...she has never recovered from the loss and now her poor husband is trying to help bring her out of her depression...the death of a child is just so hard to deal with...

[bleedingheart]

19. The mother is trying to push off the inevitable....

if she left it to God and not the doctors, her child would already be buried.

As a mother, I understand why she is doing what she is doing, but I don't think that keeping him on that ventilator is going to change things...but perhaps she just needs a bit more time before she is ready to let go.

[nitestar41]

21. I think these points should be included that...

were in the CNN article as well.

<snip>

When Emilio Gonzales lies in his mother's arms, sometimes he'll make a facial expression that his mother says is a smile.

But the nurse who's standing right next to her thinks he's grimacing in pain.

<snip>

Dr. Ross says that under the law, some dozen times hospitals have pulled the plug against the family's wishes. She says more often than not, the law is used against poor families. "The law is going to be used more commonly against poor, vulnerable populations. If this family could pay for a nurse to take care of the boy at home, we wouldn't be having this conversation," she said.

<snip>

But Gonzales says her son is on heavy doses of morphine and not in pain. She said her son does react to her. "I put my finger in his hand, and I'm talking to him, and he'll squeeze it," she says. "Then he'll open his eyes and look at me."

<snip>

Also just as a little extra detail: From the Washington Post
http://www.washingtonpost.com/wp-dyn/content/article/2007/04/10/AR2007041001620_pf.html

<snip>

Gonzales and her lawyers are seeking a transfer for the child, diagnosed with a terminal neurometabolic disorder called Leigh's disease, to a hospital that will perform a tracheotomy and insert a feeding tube so that he can live out his life in the facility or at home with his mother. But Children's Hospital doctors have declared that continuing treatment is potentially painful and is prolonging the child's suffering.

<snip>

[Javaman]

24. "keep her son on the ventilator, allowing him to die "naturally..."

What's natural about a ventilator?

Sorry, I'll stop making sense now.

:banghead: