A legal fight between a hospital and an Amish family in Ohio over whether doctors can force their 10-year-old daughter to resume chemotherapy after her parents stopped treatment is again raising questions about what rights parents have in making medical decisions for their children.
The answer in this latest case likely will be settled in court after Akron Children's Hospital sought to have limited guardianship of the girl given to an attorney who's also a registered nurse.
If a judge approves, the guardian—not the parents—would decide whether the girl should continue chemotherapy for her leukemia.
"This isn't the way it should be," said Andy Hershberger, the girl's father.
While state laws give parents a great deal of freedom when it comes to choosing medical treatment for their children, that's not true when the decision could be a matter of life or death. Courts most often will draw the line when doctors think the child's life is in danger and there's a good chance that the treatments being suggested will work.
"People see this is as a parent's rights issue, but we fail to see this is a child's rights issue," said Leonard Glantz, a professor of health law at Boston University. "The person of importance and focus is the child."
Most often, Glantz said, these disputes come up when a parent objects to treatment because of a religious belief or because they want to use natural medicines instead of chemotherapy, which some holistic practitioners oppose because of the chemicals that kill cancerous and healthy cells.
A Minnesota mother who wanted to use alternative treatments instead of chemotherapy in 2012 risked losing custody of her 8-year-old daughter if she didn't comply.
She maintained it wasn't necessary because doctors had removed her daughter's brain tumor, and there was no evidence the cancer had spread. Doctors argued otherwise, saying the girl's life still was in danger.
"I had no options," said Karen Parisian, of Minnetonka. "There was no way I wanted to have a sheriff come and take my child away from me."
Another Minnesota mom fled the state with her 13-year-old son in 2009 during a court battle over whether he should be forced to continue chemotherapy. She wanted her son's cancer treated with natural healing methods advocated by an American Indian religious group after one round of chemo made him sick.
The two returned after about a week and the boy underwent court-ordered chemo. He was found to be cancer-free after completing his final radiation treatment four years ago.
Doctors at Akron Children's Hospital said that they had to intervene when the Hershberger family ended chemotherapy for their daughter Sarah in June because it was making her extremely sick. The hospital said Sarah Hershberger's leukemia was very treatable but warned she would die within a year without chemotherapy.
A judge in Medina County in northeast Ohio ruled in July that Sarah's parents had the right to make medical decisions for her. But an appeals court on Wednesday said the judge failed to consider whether appointing a guardian would be in the girl's best interest. The appeals court ordered the judge to reconsider his decision.
The Hershberger's attorney said the ruling essentially ordered the judge to disregard the rights of the parents.
The family, members of an insular Amish community that shuns many facets of modern life and is deeply religious, sells vegetables at a produce stand in rural Medina County, about 35 miles southwest of Cleveland.
"Our belief is, to a certain extent, we can use modern medicine, but at some times we have to stop it and do something else," Andy Hershberger said, explaining that they're now treating Sarah with natural medicines, such as herbs and vitamins, and seeing another doctor.
Michelle Powers-Neeld, a neighbor who has driven Sarah to the hospital for several of her appointments, said the Hershbergers have been willing to do everything in their power to help the girl, but they also want to use holistic treatments.
"They love their child, no question," she said.
Arthur Caplan, one of the nation's leading medical ethicists, said the judges' focus isn't on whether the parents are caring and competent or whether the child wants chemotherapy to continue.
"The notion is that young children don't have the capacity yet to make choices, and when parents make choices that cost their lives, the courts can step in," said Caplan, director of the Division of Medical Ethics at New York University.
The best outcome, though, is when hospitals work with the families—even if that means using home remedies while the child is going through chemo, he said. "If this family and child aren't on board with what's happening, no one wins," Caplan said.