By ANNE DUDLEY ELLIS
Fresno Bee
Wednesday, June 13, 2007
Gage Thornton, who has brown eyes and the goofy, spaced-apart teeth that 9-year-olds often have, won't live a long life. He may not make it to 20, his body and brain damaged nearly every day by seizures.
Gage's grandmother and doctor have prepared a do-not-resuscitate order and want his teachers and others at Clovis Elementary School to honor it should the boy's heart stop beating while he's at school. They worry that if he is revived, he could have more brain damage and be unable to function.
"As much as we love him, we don't want him in bed with tubes. He was born with too many things wrong," said Sharon Snow, Gage's grandmother.
Snow, 61, has custodial rights to care for Gage, who has lived with her since he was 3. She declined to name Gage's father, who is her son, or his mother, saying they love him but are "in and out of his life." Snow said Gage's parents support her decision that the boy not be resuscitated. They could not be reached to comment.
Snow now finds herself in the middle of an ethical debate that has divided the education community.
The school has denied Snow's request that Gage not be resuscitated by campus staff. In addition, Clovis Unified School District officials have written a policy forbidding staff to follow do-not-resuscitate orders, which the school board is expected to vote on July 18.
"We can't put our employees in the position of making that decision," said Kelly Avants, director of communications for the district.
Avants said the district had been working on a policy even before the issue surrounding Gage arose, but Snow's request likely speeded the process.
The proposed policy says that to allow a student to die at school "would be extremely disruptive and disturbing to other students and staff at the school."
But even though school employees would not honor the do-not-resuscitate order, the policy would require schools to let emergency and medical workers know when a student has such an order.
With more medically fragile children attending school than ever before, do-not-resuscitate orders at schools have sparked debate across the country.
A national survey published in 2005 by the American Journal of Bioethics found that of school districts in 81 cities, only 20 percent had policies about do-not-resuscitate orders.
Clovis Unified consulted lawyers and its insurance company in deciding how to proceed on the do-not-resuscitate issue, Avants said.
In looking at legal consequences, the district considered how school staff members, students and a child's family might be affected if attempts were not made to save the child's life because of a medical order.
"We looked at all sides of that and determined this was an appropriate response," Avants said.
Some might question why children with health problems so severe that they could die suddenly are sent to school in the first place.
Dr. Marcia Levetown of Houston, a physician who has written about the care of critically ill children and bioethics, said that going to school "affirms their value as a person, enables them to participate in normal activities."
Levetown, who believes that do-not-resuscitate orders should be enforced, acknowledged that some educators are alarmed that children could witness a classmate being allowed to die.
"But what about witnessing a kid being stuck with needles or pounded on the chest?" Levetown said.
Snow said she never expected the district to balk at her request.
"I don't know when school districts acquired that much power," she said.
Snow began contemplating what would happen if Gage's heart stopped at school after four harrowing days of constant seizures in February. They were so bad that doctors hospitalized her grandson.
Friends and family helped Snow count Gage's seizures and log how long they lasted, filling pages with their notations.
Doctors believe that Gage was born with Lennox-Gastaut Syndrome, a severe form of epilepsy, Snow said.
He also has autisticlike behavior, she said, as well as ataxia that makes him clumsy and mental retardation.
Gage's breathing is often interrupted by the seizures, and one day they may cause his heart to stop, Snow said. She wants to be ready for that day. She consulted with doctors who have treated him, family members and her pastor.
The do-not-resuscitate order is on Children's Hospital Central California letterhead and is signed by Dr. Peter Nakaguchi, one of Gage's doctors.
The order says it's OK to help Gage breathe if he has temporary problems due to his seizures, but cardio-pulmonary resuscitation efforts are not to be performed.
"We had to make a very difficult decision," Snow said. "When that heart stops, God is saying, 'It's time for him to go home.' "
(The reporter can be reached at aellis(at)fresnobee.com.)
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