AUSTIN, Texas – As 17-month-old Emilio Gonzales lies in a hospital, hooked up to tubes to help him breathe and eat, his mother holds him close and cherishes every movement.
Catarina Gonzales knows her baby is terminally ill and that one day she'll have to let go. But it's not yet time, she and her attorneys contend in their legal clash with hospital officials who say it's best to stop Emilio's life-sustaining treatment.
A Texas law 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 family. "The hospital is making quality-of-life value judgments. That's a huge source of concern."
Texas is one of the few states with a timetable allowing hospitals to decide when to end life-sustaining treatment, according to studies cited by activist groups. Other states allow hospitals to cut off treatment but do not specify a time frame.
Children's Hospital of Austin has been caring for Emilio since Dec. 28. He's 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 can't swallow or gag or make purposeful movements, 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, Emilio has health coverage through Medicaid, and the hospital contends money is not part of its decision. 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, unsuccessfully as of Monday, to find another facility to care for Emilio.
Catarina Gonzales, 23, who has no other children and cannot have more, denies that her son is nonresponsive, as medical caregivers say, Carden said. She says 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.
The 1999 Texas law, signed by then-Gov. George W. Bush, is increasingly under fire from patient advocates, disability rights groups and Texas Right to Life, best known for its anti-abortion efforts.
Those varying interests want to change the so-called futile care law to eliminate the 10-day provision for cutting off life support because they say it's 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's not frequently used because families and doctors usually agree on the patient's treatment. Texas Right to Life said it has been involved in more than two dozen similar 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 within her family over whether to remove her feeding tube. Schiavo died after her tube was removed in 2005.
In Emilio's case, the family is united in wanting to keep the boy alive.
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 law unconstitutional. An Austin judge will hear arguments Tuesday on whether to block the hospital from cutting off Emilio's life support.
"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.