Fight over baby's life support divides ethicists

[Twisp]

CNN Link (http://www.cnn.com/2007/HEALTH/04/25/baby.emilio/index.html)

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. (Watch more on the battle over Emilio. Video )

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."

Elizabeth Cohen is a CNN Medical News correspondent. Senior producer Jennifer Pifer contributed to this report.




Similar to the Terri Schiavo from a few years back. Any thoughts?

[CupCake]

What a sad story. I think it should be up to the parents to decide their child fate.

[Chan]

CNN Link (http://www.cnn.com/2007/HEALTH/04/25/baby.emilio/index.html)

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. (Watch more on the battle over Emilio. Video )

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."

Elizabeth Cohen is a CNN Medical News correspondent. Senior producer Jennifer Pifer contributed to this report.




Similar to the Terri Schiavo from a few years back. Any thoughts?While the decision rightly belongs to the parents, keeping the child on a ventilator that is really doing his breathing for him is not allowing him to die (to quote the mother) "naturally, the way God intended." If the medical treatment is inflicting pain and suffering on the child (whether that is actually happening seems to be a bone of contention), does forcing the child to endure such pain and suffering constitute fighting for the child?

[CupCake]

While the decision rightly belongs to the parents, keeping the child on a ventilator that is really doing his breathing for him is not allowing him to die (to quote the mother) "naturally, the way God intended." If the medical treatment is inflicting pain and suffering on the child (whether that is actually happening seems to be a bone of contention), does forcing the child to endure such pain and suffering constitute fighting for the child?

I don't know Chan, I hate playing God. I have an older dog he'll be fourteen soon, his hips are going fast we have him on strong meds, with the meds he does good, without you can see the pain he in, can't even stand. So here we are trying to decide if we should put him down, this is a dog. I can't even go there with a child, I pray for this family~

[HeavenlyOne]

While the decision rightly belongs to the parents, keeping the child on a ventilator that is really doing his breathing for him is not allowing him to die (to quote the mother) "naturally, the way God intended." If the medical treatment is inflicting pain and suffering on the child (whether that is actually happening seems to be a bone of contention), does forcing the child to endure such pain and suffering constitute fighting for the child?

I agree with this. If there is no cure for him, do him a favor and let him go to God. It's no fun being on a ventilator nor getting chest percussion several times a day. There is no quality of life, neither for the boy nor his mother watching the situation.

Thank God I have never been in this situation, and my decision wouldn't be an easy one to make, but all too often I've seen people put their loved one on life support in an attempt to keep them living when, in reality, they died already.

If what the docs say is true about his situation, he died a long time ago. It's time to let his spirit go back to God who gave it.

[Chan]

I don't know Chan, I hate playing God. I have an older dog he'll be fourteen soon, his hips are going fast we have him on strong meds, with the meds he does good, without you can see the pain he in, can't even stand. So here we are trying to decide if we should put him down, this is a dog. I can't even go there with a child, I pray for this family~ It's not an easy decision to make. Do you make the child suffer the pain of even the machines that are keeping him alive (a selfish act of cruelty) just because you are emotionally unwilling to let him go and in hoping against hope that maybe someday a miracle will happen and he'll get better - that is, of course, if the child really is suffering pain because of the machines (something that has not been proven) - or do you try to make him as comfortable as possible as he lives out what little time he has left in this world? I wouldn't want to have to make that decision.

I've known people who've died from cancer and I've seen them suffer horrible torment from chemotherapy and radiation treatment that their families insisted they subject themselves to just so that they could live a few months longer. I've known others who've survived cancer and have myself been cancer-free for the last 10 years. From what these other people have experienced, I wouldn't wish chemotherapy and radiation treatments on my worst enemy (when my doctor wanted me to go through it after my cancer surgery, I refused)! From what some of these people have described, the treatment makes them feel worse than the cancer itself. The point, of course, is this: Are we really such selfish creatures that we insist on making our loved ones go through such torments just so we can have them around a little while longer? By artificially prolonging that child's life, isn't the mother really subjecting the child to horrible cruelty just because she is emotionally unwilling to let go (even though she wrongly believes the child would die "naturally" by being hooked up to machines that artificially breathe for him)?

[Pragmatist]

I think it should be the parents' decision, but if they decide to prolong his life then they should take care of him at home (which is possible), rather than costing the taxpayers' money by keeping him in the hospital on Medicaid.

[CupCake]

It's not an easy decision to make. Do you make the child suffer the pain of even the machines that are keeping him alive (a selfish act of cruelty) just because you are emotionally unwilling to let him go and in hoping against hope that maybe someday a miracle will happen and he'll get better - that is, of course, if the child really is suffering pain because of the machines (something that has not been proven) - or do you try to make him as comfortable as possible as he lives out what little time he has left in this world? I wouldn't want to have to make that decision.


I really don't know Chan, maybe this is faith, faith that God will heal, I really don't know. I'm thankful so far I've not had to deal with such an issues as this, a good reason why ever adult should have it all written up just encase, so love ones would not have to make such a decision as this. I for one would want my family to pull the plug, I want them to move on heal and live life, not be caught unable to move forward with their own life's, plus I would not want to bankrupt them lose it all.
I would not want the child to suffer myself, but I can understand their holding out for all hope. There nothing I would not do to protect my children, throw myself into an on coming car if it save them, don't even have to think about it, so for a mother end her child's life would not be easy. I feel for these people, but sometimes love means letting go.

I've known people who've died from cancer and I've seen them suffer horrible torment from chemotherapy and radiation treatment that their families insisted they subject themselves to just so that they could live a few months longer. I've known others who've survived cancer and have myself been cancer-free for the last 10 years. From what these other people have experienced, I wouldn't wish chemotherapy and radiation treatments on my worst enemy (when my doctor wanted me to go through it after my cancer surgery, I refused)! From what some of these people have described, the treatment makes them feel worse than the cancer itself. The point, of course, is this: Are we really such selfish creatures that we insist on making our loved ones go through such torments just so we can have them around a little while longer? By artificially prolonging that child's life, isn't the mother really subjecting the child to horrible cruelty just because she is emotionally unwilling to let go (even though she wrongly believes the child would die "naturally" by being hooked up to machines that artificially breathe for him)?

My father in law who die of cancer a few years back said he wished he never had anything done, it didn't prolong his life and his remaining days were awful from the chemotherapy and radiation treatments. I have another family member who was cured of ear cancer went through treatment lost eyesight in one eye, only to have cancer return 3 years later. He decided not to do anything, said the chemotherapy and radiation treatments were worst then having the cancer, will it's been over 35 years he in his late 80's still alive still has cancer.

Hey glad to hear your cancer free...:)

[Rico]

Every case is different. The mother seems to be contradicting herself when she says she wants him to die naturally, the way God intended. If that were true then you'd think she wouldn't want any life support at all.

[CupCake]

Every case is different. The mother seems to be contradicting herself when she says she wants him to die naturally, the way God intended. If that were true then you'd think she wouldn't want any life support at all.

You think, but letting go never easy~

[Rico]

You think, but letting go never easy~

Trust me, just went through a situation regarding life support with my mother in law. It's a long story so I don't want to go into the details, but it was tough watching her die. You are right. Letting go is never easy. I've got images in my mind of her, while dying, that I don't think I will ever forget.

[CupCake]

Trust me, just went through a situation regarding life support with my mother in law. It's a long story so I don't want to go into the details, but it was tough watching her die. You are right. Letting go is never easy. I've got images in my mind of her, while dying, that I don't think I will ever forget.

Sorry for your lost Rico~

The closes I ever been is the death of a son, stillbirth and that was hard and painful body wise, I can say it's easy to bring forth life at least it's pulling with you, unlike death there no help from the baby it's already passed away, but God took him and hopeful he didn't suffer much is my prayer. Sadly I could tell when life left the baby, it was a feeling can't explain but I knew it~

[Trouvere]

He will die eventually unless a miricle happens vent or no vent.

[ILG]

It's not an easy decision to make. Do you make the child suffer the pain of even the machines that are keeping him alive (a selfish act of cruelty) just because you are emotionally unwilling to let him go and in hoping against hope that maybe someday a miracle will happen and he'll get better - that is, of course, if the child really is suffering pain because of the machines (something that has not been proven) - or do you try to make him as comfortable as possible as he lives out what little time he has left in this world? I wouldn't want to have to make that decision.

I've known people who've died from cancer and I've seen them suffer horrible torment from chemotherapy and radiation treatment that their families insisted they subject themselves to just so that they could live a few months longer. I've known others who've survived cancer and have myself been cancer-free for the last 10 years. From what these other people have experienced, I wouldn't wish chemotherapy and radiation treatments on my worst enemy (when my doctor wanted me to go through it after my cancer surgery, I refused)! From what some of these people have described, the treatment makes them feel worse than the cancer itself. The point, of course, is this: Are we really such selfish creatures that we insist on making our loved ones go through such torments just so we can have them around a little while longer? By artificially prolonging that child's life, isn't the mother really subjecting the child to horrible cruelty just because she is emotionally unwilling to let go (even though she wrongly believes the child would die "naturally" by being hooked up to machines that artificially breathe for him)?

Did you follow some form of diet or anything to help you forego chemo etc.?