Catarina Gonzales knows her baby is terminally ill and that one day she'll die. But it's not yet time, she and her attorneys contend in their legal clash with hospital officials who want to end 17-month-old Emilio's life-sustaining treatment.
An unusual Texas law signed by George W. Bush when he was governor lets the hospital make that life-or-death call. The latest legal dispute over the law - Emilio's case - goes to court again Tuesday, the day his life support is set to end.
"The family has made a unified decision" to keep Emilio living through artificial means, said Joshua Carden, an attorney for the Gonzales family. "The hospital is making quality of life value judgments. That's a huge source of concern."
Children's Hospital of Austin has been caring for Emilio since Dec. 28. He is believed to have Leigh's Disease, a progressive illness difficult to diagnose, according to both sides.
The boy cannot breathe on his own and must have nutrition and water pumped into him. He cannot swallow or gag or move on his own, said Michael Regier, general counsel for the Seton Family of Hospitals, which encompasses the children's hospital.
Emilio's higher order brain functions are destroyed, and secretions must be vigorously suctioned from his lungs, Regier said.
"The care is very aggressive and very invasive," Regier said. Though the treatment is expensive, the hospital contends that money is not part of its decision. Emilio has health coverage through Medicaid.
Doctors and a hospital ethics panel determined the treatment is causing the boy to suffer without providing any medical benefit, Regier said.
So the hospital invoked the state law that allows it to end life-sustaining treatment in medically futile cases after a 10-day notice to the family. That deadline was voluntarily extended while the hospital and family tried to find another facility to care for Emilio, though as of Monday none had been found.
Children's Hospital has contacted 30 different medical facilities in Texas and elsewhere.
Lawyers for the Gonzales family said they were continuing to work Monday to find another place for him.
Catarina Gonzales, 23, who has no other children and cannot have more, denies that her son is non-responsive, as medical caregivers say, Carden said. She says that the boy smiles and turns his head toward voices.
"Every day that her son is alive and she gets to hold him and be next to him moving around is a precious day for her," Carden said.
Carden is working with the family through the Alliance Defense Fund and lead attorney Jerri Ward, who has represented other Texans in similar disputes with hospitals over life-sustaining treatment.
The 1999 Texas law is increasingly under fire from patient advocates, disability rights groups and Texas Right to Life, best known for its anti-abortion efforts, who say, among other things, that 10 days is not enough time to transfer a critically ill person to another facility.
A state Senate committee plans to hear testimony on proposed changes to the law Thursday.
The powerful Texas Hospital Association and other medical organizations largely support the existing law and say it is not used often because families and doctors usually agree on the patient's treatment. Texas Right to Life, which is helping the Gonzales family try to relocate Emilio, said it has been involved in more than two dozen such cases over the past year and a half.
Emilio's situation differs from the case of Terri Schiavo in Florida, who was in a persistent vegetative state and at the center of a legal dispute over whether to remove her feeding tube. In her case, family members disagreed with each other about the course of treatment. Schiavo died after her tube was removed in 2005.
Texas is one of the few states with a timetable allowing hospitals to decide to end life-sustaining treatment, according to studies cited by activist groups.
In Emilio Gonzales' case, attorneys for both the family and the hospital say the boy would likely die soon after his ventilator is shut down.
Last week, a federal judge refused to intervene and left it to the state court where a lawsuit was pending that seeks to declare the Texas futile care law unconstitutional.
The hearing Tuesday with determine whether a temporary restraining order is granted prohibiting Emilio's life support from being cut off by the end of the day.
"We feel that the original decision is right, and it's time to proceed," said Regier, the hospital's lawyer.
If the hospital is allowed to go forward, the life support equipment would likely be turned off during the day Wednesday when the family can be present and have the aid of social workers and chaplains, he said.
Carden argues that Emilio's death by asphyxiation would be painful. He said the law prevents hospital workers from even giving the boy the drugs death row inmates receive to help them as they are executed by lethal injection.
"It's not like he'll just drift quietly off," he said.
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