Hospital wants to remove baby's life support without family's consent

Fight over baby's life support divides ethicists - CNN.com

Fight over baby's life support divides ethicists

POSTED: 4:26 p.m. EDT, April 25, 2007

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

I'm not sure how I feel about this. Poor child though.

[JaJae]

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."

Keeping him on a machine is not allowing him to die naturally the way God intended. I don't think the hospital should be able to overstep the boundaries of the mother, but I also think the mother isn't thinking clearly.

[Stylerod]

Originally Posted by JaJae

Keeping him on a machine is not allowing him to die naturally the way God intended. I don't think the hospital should be able to overstep the boundaries of the mother, but I also think the mother isn't thinking clearly.

Yeah, I thought that part was a little strange as well.

I also agree that the mother should have the final say (in most cases).

[7960]

Originally Posted by JaJae

Keeping him on a machine is not allowing him to die naturally the way God intended.

Exactly.

Have a hearing, have an impartial panel decide......I feel for the mother but with that disease the baby is never going advance past where he is right now.

Originally Posted by Stylerod

I also agree that the mother should have the final say (in most cases).

I'm assuming you meant "parent(s)"

[kinggovernor]

hospital has no right to remove the life support

[Publius]

This decision is up to the parents, the only time anyone but the parents should be able to step in as an arbiter is if one parent wants to take it off life support and the other doesn't.

[7960]

Originally Posted by kinggovernor

hospital has no right to remove the life support

if they believe their treatment is causing the child to suffer needlessly, yes they do.

[Scrum]

Originally Posted by 7960

if they believe their treatment is causing the child to suffer needlessly, yes they do.

If the baby will never have any quality of life, they should let it die.

[Kytro]

Unless there is a miracle cure just around the corner, the baby is as good as dead anyway.

The real ethical question is should they keep the baby alive just to satisfy the emotional desires of the mother

[motivez]

I'm torn on this really, if the child is obviously in pain and there's absolutely no hope of saving him, then I don't see a reason that he should continue suffering..

That said, I don't know that it's my decision to make. Unless they can rule her mentally incompetent or under too much distress or something, I think it's ultimately her decision..

[Kytro]

Originally Posted by motivez

That said, I don't know that it's my decision to make. Unless they can rule her mentally incompetent or under too much distress or something, I think it's ultimately her decision..

I'm not sure it can be argue that society has an obligation to fulfill the wishes of a mother against better medical opinion. Though we may not have the right to make that decision as such, we do have a right to with-hold supporting the decision she makes.

Originally Posted by JaJae

Keeping him on a machine is not allowing him to die naturally the way God intended. I don't think the hospital should be able to overstep the boundaries of the mother, but I also think the mother isn't thinking clearly.

I agree with you. But do "we" (or the hospital or the state) really have the right to make that decision for her?

Originally Posted by 7960

Exactly.

Have a hearing, have an impartial panel decide......I feel for the mother but with that disease the baby is never going advance past where he is right now.

I'm assuming you meant "parent(s)"

So what do we do with all of the people who have been in a come for years and sometimes decades? Do we cling to the hope that they will eventually come to or do we "put them out of their misery" so to speak? Wouldn't this case set a precedent for those cases as well?

Originally Posted by kinggovernor

hospital has no right to remove the life support

What about the issue of payment? Who is footing the bill? Has their insurance maxxed out? Would that part even be considered? edit: I see she's on Medicaid, n/m

Originally Posted by 7960

if they believe their treatment is causing the child to suffer needlessly, yes they do.

Couldn't this also set a precedent? Let's force abortions on all pregnant women whose children will die at birth due to a disease. Let's euthanize this child because she truly has no chance at life either. Parents explain keeping daughter small

[7960]

Originally Posted by 03 white zx3

So what do we do with all of the people who have been in a come for years and sometimes decades? Do we cling to the hope that they will eventually come to or do we "put them out of their misery" so to speak? Wouldn't this case set a precedent for those cases as well?

There's a difference between maintaining someone in a coma and what's happening to this baby. The hospital and doctors believe they're actually hurting this child by treating it........... HUGE difference.

Originally Posted by 03 white zx3

Couldn't this also set a precedent? Let's force abortions on all pregnant women whose children will die at birth due to a disease.

There is no slippery slope. Forcing a woman to abort a baby is vastly different than removing treatment that's causing suffering.

Originally Posted by 7960

There's a difference between maintaining someone in a coma and what's happening to this baby. The hospital and doctors believe they're actually hurting this child by treating it........... HUGE difference.

I see your point, but I don't necessarily know if I agree.

[thomez]

tell her she can keep the baby alive as long as she wants, but not on our dollar

[Phantom]

Originally Posted by thomez

tell her she can keep the baby alive as long as she wants, but not on our dollar

My thoughts exactly. Use the government money to help those who might benefit the most themselves from the care, not indulgent relatives.

[Scrum]

Originally Posted by thomez

tell her she can keep the baby alive as long as she wants, but not on our dollar

I didn't even notice that they were on medicade.

The hospital has every right to pull the plug in this case.

[lew]

Unless the mother has some sort of mental illness that doesn't allow her to think straight, it's her decision.

Fuck the hospital.

[thomez]

Originally Posted by lew

Unless the mother has some sort of mental illness that doesn't allow her to think straight, it's her decision.

Fuck the hospital.

[lew]

Originally Posted by thomez