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Old 04-26-2007, 09:29 AM   #1
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Baby Emilio

Who should make the decision?

AUSTIN, Texas (CNN) -- 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.

Which one it is -- an expression of happiness or of suffering -- is a crucial point in an ethical debate that has pitted the mother of a dying child against a children's hospital, and medical ethicists against each other.

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."

The two sides have been in and out of courts, with the next hearing scheduled for May 8.

The case, and the Texas law, have divided medical ethicists. Art Caplan, an ethicist at the University of Pennsylvania, supports the Texas law giving the hospital the right to make life or death decisions even if the family disagrees. "There are occasions when family members just don't get it right," he said. "No parent should have the right to cause suffering to a kid in a futile situation."

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."

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.

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.

Emilio is on Medicaid, which usually doesn't pay for all hospital charges. The hospital's spokesman said that he doesn't know how much it's costing the hospital to keep Emilio alive, but that cost was not a consideration in the hospital's decision.

"[Our medical treatments] are inflicting suffering," said Michael Regier, senior vice president for legal affairs and general counsel for the Seton Family of Hospitals, of which Austin Children's is a member. "We are inflicting harm on this child. And it's harm that is without a corresponding medical benefit."

"It's one thing to harm a child and know this is something I can cure," he added. "But that's not the case here." Regier says Emilio is unaware of his surroundings, and grimaces in pain. He said the ventilator tube down his throat is painful, as is a therapy in which hospital staff beat on his chest to loosen thick secretions.

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."

Gonzales said she'll continue to fight for treatment for her son. "I love my kid so much, I have to fight for him," she said. "That's your job -- you fight for your son or your daughter. You don't let nobody push you around or make decisions for you."
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Old 04-26-2007, 09:40 AM   #2
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While I can understand her hesitation, I think that if they'd allowed the boy to die "as God intended", he'd already be dead. The ventilator is already playing God.

I don't know what's right or wrong in this case. I want to say that if it were my child and they knew he was in pain, I'd let him go, but I couldn't say for sure until I'm in that position...
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Old 04-26-2007, 09:41 AM   #3
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Quote:
die "naturally, the way God intended."

By keeping him alive artificially?

Quote:
her son is on heavy doses of morphine and not in pain
That's not necessarily right. If you have very heavy pain even morphine isn't killing that pain.
It doesn't help her child to go through this ordeal. And he isn't alive "naturally", but kept alive.
This will not change.
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Old 04-26-2007, 10:51 AM   #4
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God didn't intend for your child to live on a ventilator woman...
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Old 04-26-2007, 11:17 AM   #5
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I always give more latitude to parents of young children in cases like this, having worked at a pediatric hospital. It is a lot harder emotionally to let go of a 3 year old than it is of your 92 year old grandmother who is on the exact same ventilator.

But at some point, it turns into somewhat of a selfish act - you're keeping somebody "alive" because you can't cope with letting them go, not because it is the best medical decision for them. What I especially don't understand is people like this woman who are so religious - if you truly have faith, then you should believe that there is life after death for your child and what is such a terrible thing about taking him off the ventilator so he can cross over to the other side?
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Old 04-26-2007, 11:17 AM   #6
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Originally posted by Liesje
While I can understand her hesitation, I think that if they'd allowed the boy to die "as God intended", he'd already be dead. The ventilator is already playing God.
This is what I was thinking too.
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Old 04-26-2007, 12:03 PM   #7
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Originally posted by anitram
I always give more latitude to parents of young children in cases like this, having worked at a pediatric hospital. It is a lot harder emotionally to let go of a 3 year old than it is of your 92 year old grandmother who is on the exact same ventilator.

But at some point, it turns into somewhat of a selfish act - you're keeping somebody "alive" because you can't cope with letting them go, not because it is the best medical decision for them. What I especially don't understand is people like this woman who are so religious - if you truly have faith, then you should believe that there is life after death for your child and what is such a terrible thing about taking him off the ventilator so he can cross over to the other side?
I agree with you about children- it must be wrenching beyond comprehension, and it's so easy to intellectualize it when it's not us in that situation.

As for the religion aspect, yes you believe that it is crossing over to a new and different life but emotionally it really doesn't make it easier to let go faster. Just as intellectually you know things, when you believe things in that way there are still conflicts caused by human emotion. That's just my take on it. I feel for that mother so much, I can't imagine being in her shoes.
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Old 04-26-2007, 12:35 PM   #8
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I would have to let him go...
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