Despite Family’s Wishes, Hospital Plans to End Baby’s Life Support

Little 17-month old Emilio Gonzales has been a patient at Children’s Hospital of Austin since December 28. Emilio cannot breathe on his own so he is on a ventilator. He can’t eat or swallow, so he must have food pumped into him and secretions must be vigorously suctioned from his lungs on a regular basis. He can’t make purposeful movements, and has no higher order brain functions.

Doctors believe Emilio has Leigh’s Disease, a rapidly progressive degeneration of the central nervous system that causes symmetrical patches of damage to develop in different areas of the brain as nerve cells die. There is no treatment or cure and death usually occurs within a few years, although a few children have survived into their teens.

Catarina Gonzales, Emilio’s mother, knows that her son is terminally ill and that one day he will die. But she and her family are not ready for that day yet. Joshua Carden, an attorney for the family, said that the family has made "a unified decision" to prolong Emilio’s life through artificial means. "The hospital is making quality of life value judgments. That’s a huge source of concern."

A law in Texas allows hospitals to decide when it is time to end treatment that sustains life in a terminally ill patient, as long as the family is given 10 days notice beforehand. Only a few states allow hospitals to determine such a timetable. Some states allow hospitals to cut off treatment, but do not specify a time frame. The law, which is referred to by some as the "futile care law," is scheduled to be discussed by a state Senate committee on Thursday. Some patient advocate groups say the law should be changed to eliminate the 10-day provision, saying that 10 days isn’t long enough to arrange transfer of a critically ill person to another facility.

Most medical organizations in Texas support the existing law and say that it isn’t used very often because families and doctors usually agree about what is best for a patient. But in Emilio’s case, the hospital and Catarina Gonzales hold completely opposite opinions about what is best.

Michael Regier, general counsel for the Seton Family of Hospitals, which includes the children’s hospital, said that the treatments necessary to keep Emilio alive are "very aggressive and very invasive." Emilio’s health coverage is insured through Medicaid, but although the life-support treatments are expensive, the hospital adamantly contends that money is not the issue. According to Regier, a hospital ethics panel and Emilio’s doctors determined that the treatments are causing the child to suffer without providing any medical benefit other than prolonging his life of suffering.

The hospital has already voluntarily extended the 10-day deadline while the hospital and the family both tried, unsuccessfully, to find another facility to transfer Emilio to. With the new deadline of Tuesday looming, the family petitioned a federal judge last week to intervene, but the judge left the decision to the state court, where a lawsuit is already pending that wants to make the law unconstitutional. A judge will hear arguments Tuesday about whether or not to prevent the hospital from ending Emilio’s life support treatments.

Family attorney Carden said that Catarina Gonzales, 23, disputes the hospital’s claim that her only child is nonresponsive. Catarina, who cannot have any more children, says that Emilio smiles at her and turns his head when he hears 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. He said that death by asphyxiation would be painful for Emilio, who would not even be allowed to receive the drugs given to death row inmates to make their deaths easier when they are given lethal injections.

But doctors and hospital officials believe that Emilio is suffering constantly, with his little body hooked up to tubes, unable to move on his own, with fluids and nutrition being pumped in and suctioned out. "We feel that the original decision is right, and it’s time to proceed," said Regier, the hospital’s lawyer.

If the court does not block the hospital’s decision, the life support equipment will probably be turned off sometime Wednesday with Emilio’s family present, and social workers and chaplains will be available to assist the family members. And while everyone waits for a final determination, Catarina Gonzales holds her son close.