Gan
04-25-2007, 05:36 PM
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."
http://www.cnn.com/2007/HEALTH/04/25/baby.emilio/index.html
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I'm torn on this issue for one reason. (see HOWEVER)
I personally think that the mother, as the child's guardian, should have the final say in stopping life support. By law she is the legal guardian and is empowered to act on the child's behalf.
HOWEVER
I also do not think that parents should be allowed to continue indefinately heroic life support measures against medical advice at the cost of the tax payers without the taxpayers consent. Especially when the motivation can be judged as emotional rather than logical/factual.
This is where the legal rights of the individual trespass upon the discrimination of the poor versus rich access to healthcare.
In many cases, the parent's refusal to agree with medical consensus tends to be based more on emotional rather than logical/factual basis. Does that mean we should have the parents evaluated by a psychologist/psychiatrist?
I know if it were my child, I would be anything but objective or logical. So I might be allowing personal bias into my stance on this issue.
Thoughts? Discuss.
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."
http://www.cnn.com/2007/HEALTH/04/25/baby.emilio/index.html
________________________________________
I'm torn on this issue for one reason. (see HOWEVER)
I personally think that the mother, as the child's guardian, should have the final say in stopping life support. By law she is the legal guardian and is empowered to act on the child's behalf.
HOWEVER
I also do not think that parents should be allowed to continue indefinately heroic life support measures against medical advice at the cost of the tax payers without the taxpayers consent. Especially when the motivation can be judged as emotional rather than logical/factual.
This is where the legal rights of the individual trespass upon the discrimination of the poor versus rich access to healthcare.
In many cases, the parent's refusal to agree with medical consensus tends to be based more on emotional rather than logical/factual basis. Does that mean we should have the parents evaluated by a psychologist/psychiatrist?
I know if it were my child, I would be anything but objective or logical. So I might be allowing personal bias into my stance on this issue.
Thoughts? Discuss.