Nutrition withdrawal queried

Expert: Parents have a broad latitude to make medical moves for their children

Even if Olivia Gant’s medical condition was as severe as her mother led others to believe, there’s no reason the girl couldn’t still be alive today with proper medical management, a children’s hospice expert said.

Kelly Renee Turner, 41, was indicted last week by a Douglas County grand jury on 13 charges, including first-degree murder, in the death of her 7-year-old daughter. Turner, who had portrayed Olivia as suffering from a terminal illness, also has been charged with child abuse and with multiple financial crimes for allegedly defrauding Medicaid and charities that donated to the family.

Children’s Hospital Colorado called the Colorado Department of Human Services in 2018 after Turner falsely claimed another daughter had cancer and was suffering from bone pain. Doctors, nurses and hospital staff who work with patients are required by Colorado law to report suspected child abuse or neglect.

Olivia died Aug. 20, 2017, a few weeks after her mother had her transferred from Children’s to a hospice facility.

According to a police affidavit, multiple doctors said they didn’t believe Olivia was terminally ill, and the hospital had offered treatment options other than withdrawing her feeding tube, but allowed Turner to make the final decision.

Officials at Children’s Hospital declined to comment on the case Tuesday.

Her true medical condition is difficult to untangle. Olivia had been diagnosed with autism, although not all of the doctors who treated her agreed. Turner also reported Olivia had seizures and other neurological conditions, but nothing in her medical record supported that, according to the affidavit. In 2014, she had a surgery that created an opening in her abdomen to bypass part of the intestines, and she received a feeding tube that went into the small intestine. By the time of her death, she had undergone another surgery to create an opening for urine through her abdominal wall, and she was receiving all of her nutrition through her veins.

Even if Olivia’s intestine had failed to the point that she needed to be fed intravenously, she still could have lived for decades with proper management, said Dr. K. Sarah Hoehn, medical director for pediatric palliative care services at the University of Chicago Medicine. It’s appropriate to withdraw nutrition from children only in limited circumstances, such as if a child is in a persistent vegetative state after a near-drowning or if feeding is causing terrible pain — which shouldn’t be the case for

someone who’s receiving an IV drip, she said.

Hoehn said she has had patients who developed intestinal failure in childhood because of mitochondrial disorders such as the one Olivia’s mother claimed she had, but they did well with IV nutrition and now are going to college.

“There’s absolutely no reason (the case) needed to go to hospice,” she said. “You can support people on (intravenous nutrition) for 20 years.”

While it’s unusual to withdraw nutrition from pediatric patients, the law gives parents broad authority to determine what’s best for their children, said Dr. Peter Murray, a neonatologist who studies ethics in pediatric care at the University of Virginia.

Physicians typically need a court order to continue treating a child over a family’s objections, except in emergencies in which the child is at immediate risk of death or irreversible harm, Murray said, adding he wasn’t speaking on behalf of the hospital and didn’t know the circumstances of the Gant case.

It’s acceptable to stop nutrition if there’s agreement that the child has a terminal illness or has a poor prognosis, such as a severe neurological injury, Murray said. If doctors are in disagreement about the patient’s case, a hospital ethics team could decide whether to pursue court-ordered treatment, but otherwise, parents make the final decision, he said.

“The burden of proof for a physician to overrule parental decisional authority is pretty high,” he said. “We give parents a fair amount of leeway.”

While parents do have substantial control over their children’s medical care, it’s a well-established principle that medical providers also have some responsibility, said Christine Mitchell, executive director of the Harvard Medical School’s Center for Bioethics and a nurse.

If the process is working correctly, a doctor won’t refer a child to hospice unless the child has a life-limiting condition, and won’t approve removing nutrition unless the feeding process is doing more harm than good, she said.

If there’s a disagreement among doctors or between the medical team and the family, they should consult with colleagues or bring in the ethics board, Mitchell said. If they suspect medical abuse, it’s important to call child protective services to investigate whether the child needs to be separated from the parent, she said.

“I think there is pretty well-established shared responsibility (in children’s health care),” she said. “We respect parents’ rights, but it’s not that simple.”