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Who Gets to Decide When Treatment is Futile?

By Mark Davis

I cannot imagine Catarina Gonzalez's pain.

Her little boy, Emilio, lies connected to tubes at Children's Hospital of Austin. His 17 months of life has been a tragic struggle against a massively disabling condition called Leigh's disease, and he is losing.

He is unable to breathe or eat on his own. Brain damage makes purposeful movement impossible. Now there is a debate over when -- or whether -- to stop the machines that keep him technically alive.

If this brings back memories of Florida's Terri Schiavo case, it's important to note some differences.

First, to the child's benefit, there is no close relative with questionable motives striving to get the tubes pulled. Second, to the benefit of all of us, there are no charlatans circling the building insisting that he could be made well with the right treatment.

The disagreement arises over who decides when treatment becomes futile. As in the Schiavo case, the term "treatment" hardly applies. What we have is artificial sustenance of life in the face of a condition that would have long ago brought natural death.

This issue is now gaining volume in both the courts and the Texas Legislature.

The hospital is invoking the state law that allows it to end life-sustaining procedures with 10 days' notice. This gives families a window to find another facility that might agree to accept their loved one for further care.

Signed into law by then-Gov. George W. Bush (and favored at the time by Texas Right to Life) the deadline is imposed only after doctors and an ethics panel determine that the technology keeping the patient alive is of no benefit and may even be detrimental.

This is the belief of the hospital in little Emilio's case. Hospital attorney Michael Regier says doctors consider the procedures necessary to keep the child alive "very invasive," including vigorous suctioning of secretions from his lungs.

But Gonzalez attorney Joshua Carden asserts that the law gives hospitals too much leeway in making "quality of life decisions." Patient advocates and right-to-life groups have concluded that the law is flawed and needs to be changed so that we don't face the horribly uncomfortable prospect of toddlers removed from life support against an objecting mother's wishes.

But sometimes that call must be made. The relative seeking to continue care at all costs (in this case, taxpayer cost) may seem the caring voice that deserves deference. Activists on that side will proudly proclaim that they are on the side of "life." Mr. Carden poignantly describes how every day Emilio is alive "and she gets to hold him and be next to him ... is a precious day for her."

I'm sure it is. But that doesn't mean hers is the only view to be considered when there's no hope for improvement.

As the courts hear the legal clash, state Sen. Bob Deuell is looking to fix what he sees as wrong with the law. He maintains that 10 days is simply not enough, even after the medical and ethical evaluation period. That's a fair point, but any parent facing this challenge surely sees it coming and should be hunting for alternatives the moment a hospital seems to be wavering.

Also, hospitals tend to go to Herculean lengths in helping families, even extending those deadlines out of their own kindness. Children's Hospital of Austin has contacted 30 facilities to find a place that might take Emilio.

None has. His life is largely over. The remaining question is when it will end and by whose decision. Reasonable people can differ on those criteria from case to case, and perhaps the 10-day provision should be lengthened.

But not indefinitely. Sometimes objective voices will have to prevail in the face of what might be an endless struggle by a loving family to maintain expensive care that serves no medical purpose.

And if that seems like an affront to a life God created, remember that but for technology created by man, God would have taken Emilio some time ago.

Mark Davis is a columnist for the Dallas Morning News. The Mark Davis Show is heard weekdays nationwide on the ABC Radio Network. His e-mail address is mdavis@wbap.com.

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