A judge on Wednesday dissolved a temporary restraining order directed at Primary Children's Medical Center now that the hospital has agreed to take a hands-off approach to 6-year-old Jesse Koochin.
The Florida boy, who has been diagnosed with an aggressive and usually fatal brain tumor, became the subject of news media attention when physicians told the family he was brain dead and should be taken off life support.
On Oct. 13, attorneys for Steve and Gayle Koochin, the boy's parents, got a temporary restraining order to prevent Primary Children's Medical Center from declaring the boy dead or withholding treatment. The Koochins arranged at-home hospice care and moved the boy from the hospital two days later. There, he has been treated using both traditional and alternative medicine, his father said.
Third District Judge William Barrett dissolved the temporary restraining order and closed the case but said another order entered into court records Wednesday would remain in place "ad infinitum."
That order states that Primary Children's has no ongoing right or responsibility for any further medical care for Jesse and prohibits the hospital from filing a death certificate for the boy with the state Department of Vital Statistics.
The Koochins worry about the filing of a death certificate, which would impact payment for Jesse's care, since Primary Children's Medical Center physicians had at one point declared the boy dead.
David Erickson, who represents the hospital, said Primary Children's had agreed to the provisions in the latest order. He told the Deseret Morning News that the issue could have been worked out without a restraining order. The Koochin family and attorneys disagree.
Steve Koochin, outside the courtroom, said although his son still is quite ill with cancer, he and his wife have observed signs the boy is making incremental improvements that give them hope.
"I'm a realist," Koochin said. "Right now, he's on the fence. It will take a miracle, and that's what we're praying for."
The Koochins are heartened by the fact that Jesse now needs far less oxygen delivered through the respirator and responds to touch. Jesse's heart rate Wednesday was 79 and his blood pressure was a near normal 111 over 88, his father said.
The alternative medical treatments for Jesse include giving him juices made from organic produce through his IV, along with minerals, and giving him massages, Koochin said.
David Pace, one of the Koochin's attorneys, said if Jesse's heart stopped beating, it's unlikely the Koochins would take Jesse to Primary Children's Medical Center for attempts at restarting the heart. If he were taken there, history would be irrelevant. Doctors could make a new assessment because the restraining order is invalid, Pace said.
The family had come to Utah from Florida to seek alternative treatment for his medulloblastoma, a tumor in his brain and spine. He was too sick, however, and the Utah practitioner sent them immediately to Primary's emergency room. He was admitted that day, Sept. 15.
For the next month, doctors treated him with a combination of standard therapies and some modalities suggested by the family, Dr. Chris Maloney, assistant medical director, told news reporters two weeks ago. From the outset, doctors there considered the tumor untreatable and aggressive. Two days before he was declared brain dead — a designation "taken back" under court order — Maloney said Jesse's brain had been pushed down through the base of his skull. Two different physicians assessed the boy, concluding he met the conditions for brain death.
As far as the parental rights issue that has emerged with this case, attorney Pace said he understands the hospital's medical position but believes that Jesse's parents have the right to care for him themselves if they choose.
"The concept of brain death is a modern concept, and it's to allow for organ donation. Some states don't even recognize it," Pace said.
In a statement issued Wednesday, Primary Children's offered another view of brain death and remained adamant that physicians who declared Jesse brain dead had not erred.
"Utah State law clearly defines brain death, and that law is consistent with laws in every state in this country. It is understandable that the death of a child is difficult for parents. Nevertheless our staff cannot continue to provide treatment for patients who have met the condition of brain death because it is unethical to do so. In fact, if a hospital tried to bill a payer for such services, it could be considered medical fraud.
"One of our ethicists pointed out that if a physician were to propose a medical study that involved keeping a person on a ventilator for an undetermined length of time following brain death, the study would be denied as unethical by every institution in this country," the statement said.
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