Emilio's short life likely to be long remembered

Monday, May 21, 2007

Emilio Gonzales didn't even live 19 months, but his struggle probably will be remembered for years to come.

The poignant case of the toddler who died Saturday evening after spending his last five months on life support at Children's Hospital of Austin will continue to be debated by medical professionals, lawmakers, medical ethicists, theologians and others concerned with end-of-life care, lawyers familiar with the case said.
"Where do we draw the line between the patient's autonomy, on the one hand, and respecting the rights, interests and wishes of the family and the medical and ethical judgments of the health care providers?" asked Michael Regier, general counsel for the Seton Family of Hospitals, which operates Children's Hospital. "His life and death and his experience will serve to illuminate that discussion."

At issue in the case was a basic question that struck a nerve with people around the world: Should doctors have the right to stop treating a patient against a family's wishes?

Under Texas' 1999 Advance Directives Act, doctors have that authority. But many Texans might not have known that until they heard about Emilio, said Jerri Ward, the lead lawyer for Emilio's mother, Catarina Gonzales of Lockhart.

Gonzales wanted every effort made to keep Emilio alive, but doctors urged that the terminally ill child be allowed to die in dignity and peace.

Born blind, deaf and developmentally delayed on Nov. 3, 2005, he was eventually diagnosed with Leigh's disease, a fatal neurometabolic disorder that causes the central nervous system to collapse.

As right-to-life organizations, which oppose abortion and euthanasia, and disability rights groups got involved, Emilio became a cause célèbre.

The organizations' members sent hundreds of e-mails to Gov. Rick Perry and petitioned him to "save Emilio."

"I think his story has educated thousands of Texans about this law, which is pretty much about a stealth law," Ward said. "Most people were unaware that their choices could be overridden in a way that could hasten their death."

The law allows doctors to stop treating a patient whose ongoing care they deem to be medically futile and gives families 10 days to find another doctor or facility willing to treat their loved one.

Gonzales couldn't find a hospital to take her son, whose care was being paid for by two governmental programs, Medicare and Medicaid.

She went to court to stop doctors from unplugging his respirator and planned to challenge the law on constitutional and other grounds at a hearing in Travis County Probate Court on May 30.

Gonzales, who is 23, cried frequently Sunday. She said that although she was interested in pursuing the court case, she wasn't sure what she will do now.

"My son's gone," she said. "Right now, I can't do anything."

Because of complications during her pregnancy, she said, she cannot have more children. She believed that her Catholic faith compelled her to keep Emilio alive, regardless of doctors' beliefs that he could not recover and that continued treatment was prolonging his suffering.

Greg Hooser, chairman of the Advance Directives Act Coalition, helped write the state law. Hooser said Emilio's death could lend greater urgency to passage of proposed changes in the law as the legislative session draws to a close.

"Emilio helped to educate the Legislature with a real-life example, with all the agonies, pain and real-life conflicts that cases such as these bring to bear on all of the parties involved," he said.

Senate Bill 439, authored by Sen. Bob Deuell, R-Greenville, and amended by Rep. Dianne White Delisi, R-Temple, gives families more time to prepare to move their loved ones when doctors want to stop treating patients.

Under current law, families have two days to prepare for an ethics committee review of the doctor's decision to stop treatment. The proposed law would change that to seven days. And the time allotted for a transfer would be extended from 10 days to 21.

Other states are watching how Texas resolves this issue, and Emilio's case could indirectly affect what other legislatures do, Hooser said.

He said that legal scholars are preparing to cite the case in new articles and that Emilio's name has already been invoked by those arguing both sides of the issue.

"This is going to be a case that is going to be talked about for some time to come in a lot of different ways," Regier said. "We're going to see legal experts talk about it in the legal sphere; you're going to see medical experts talk about it, moral theologians talk about it; and legislators and legislative bodies will struggle with what is the right balance."

Regier said Seton supports the changes in SB 439.

Ward said that although the measure improves the law, "that doesn't mean I'm not going to sue."

Ward said she will wait for Gonzales to decide whether to proceed with a legal challenge to the Advance Directives Act. Their case contends that the law is unconstitutional and discriminates against people who are disabled.

Although Emilio's story is about those legal and ethical issues, Ward said, first and foremost, it is about a mother's love for her son. And now, that mother is grieving.

Gonzales knew that doctors had diagnosed Emilio with a terminal illness, but she hoped that she might take him home to die even as doctors said he could not be weaned from a respirator, which required him to be in the intensive care unit.

By Thursday, Emilio had taken a turn for the worse, with a high fever. Gonzales said she knew his time was short, so she stayed with him.

The next day, he worsened. By Saturday, his heart was racing, and Gonzales said she knew he was dying.

"They said he had an infection," she said, adding that he did not receive antibiotics until 6 p.m. Saturday.

An hour later, she called Ward. Her family, including four sisters, a brother and her parents, had already gathered at the bedside. They all held Emilio, she said.

"I told him it was OK to go," she said.

She did not request an autopsy. Regier said an official cause of death was not available Sunday.

Despite her grief, Gonzales said she knew that Emilio was "in a better place."

"I have a lot of peace, but it hurts so much," she said.

She wants her son's funeral to be open to the public.

"I don't know what to do about the funeral expenses," said Gonzales, who quit her cashier job to be with her son last year.

De Leon Funeral Home in Lockhart is in charge of arrangements, which were pending Sunday night.
source : www.statesman.com