Government, family clash over child's life-and-death care

SALT LAKE CITY -- Doctors say 12-year-old Parker Jensen has Ewing's sarcoma, an aggressive and deadly cancer, and needs chemotherapy.

His parents contend he's healthy now and the chemotherapy could just as easily kill him. They accused one hospital of rushing the diagnosis and two others of rubber-stamping it, then fled to Idaho with their son to avoid a court order requiring the treatment.

Now, Daren and Barbara Jensen are charged with felony kidnapping for going into exile with the boy, setting up the latest collision between a family and the government over who decides a child's best interests when it comes to life-and-death care.

At a hearing Friday, a judge dropped the state's custody warrant for Parker after the Jensens agreed to allow the treatment if an Idaho physician chosen by Daren Jensen recommends it. The kidnapping charges, however, for taking Parker from suburban Salt Lake City to Idaho to avoid the court order, stand. Deputy District Attorney Angela Micklos said she would meet with the parents' attorney Monday to negotiate their surrender.

"Given the situation, what else can we do but get Parker the care he needs," Daren Jensen said Friday by telephone from Pocatello, Idaho, where the family is staying with Parker's grandparents.

Parker will get his fourth diagnosis, which will likely face scrutiny from the parents, who have maintained that Parker's cancer is in remission and he doesn't need the harsh treatment.

But what if his parents are wrong?

"Every responsible person has considered that possibility," Daren's brother, Tracy Jensen, said at a rally Thursday at the Utah Capitol that drew hundreds of family supporters. He turned the scenario around.

"If the state makes that decision and he dies, who's responsible? Who's going to bury that boy?" Tracy Jensen said.

The standoff, resolved Friday after Utah Gov. Mike Leavitt ordered state attorneys to negotiate, isn't the first clash between government and parents over who gets to make critical health care decisions for children.

Aggressive intervention

In 2001, following the deaths of two other Utah boys who got delayed treatment for cancer, child-welfare authorities adopted a more aggressive intervention policy in cases of medical neglect.

Courts across the country have firmly established a state's right to intervene in a family to save a child. In Texas, two parents waged a summer-long battle against child-welfare authorities for alternative care. They finally relented and allowed their 10-year-old daughter to receive surgery for a lacerated colon.

The girl, Rachel Stout, later recovered and was released from state custody.

Utah has seen a handful of life-or-death custody battles in the past decade, including the case of Christopher and Kyndra Fink, who put their "prophet" son on a starvation diet of fruits and nuts.

In 1998, the Finks kidnapped the malnourished toddler from a Salt Lake City hospital and were caught 16 days later in Montana's Beartooth Mountains -- where the mother had given birth to a second child.

Their parental rights were terminated, said Tracy Mills, the managing guardian ad litem in the Jensen case.

Mills is careful to draw a distinction between the Jensens, who have drawn widespread sympathy in Utah, and the Finks.

"There wasn't a big public clamor for parents who fed him only lettuce and watermelon," Mills said.

In 1944, the U.S. Supreme Court ruled adults can make "martyrs" of themselves and cannot use religion or any other reason to deny their children health care. That thinking has led other courts to order even dental care for children.

In Utah especially, the conflicts often involve religious beliefs. The Jensen family is Mormon, a religion that traditionally emphasizes healing through prayer and the laying on of hands. The parents were searching for alternative medical care and have heavily relied on faith.

Moreover, they insist their son is healthy, almost three months after doctors removed a tiny tumor from the soft palate of his mouth.

Doctors say the boy has only a 5 percent chance of living without an immediate, 49-week regimen of chemotherapy.

Mills, whose office was appointed to represent Parker's interests in court when the state obtained custody for the boy's chemotherapy, said he doesn't always push a medical-neglect case to its limits. Once, he backed off when a Jehovah's Witness refused a blood transfusion for a child suffering from cystic fibrosis. The young girl was going to die anyway, and Mills was willing to respect the family's final wish.

But Mills said it was "the end of a long road" for the Jensen family.

After the parents and their defenders accused Primary Children's Medical Center of rushing the Ewing's sarcoma diagnosis and the two other hospitals of rubber-stamping the finding, Mills and the other court-appointed guardian, Mollie McDonald, issued a detailed statement defending their actions and accusing the Jensens of prolonging their son's case.

"The Jensens have not come forward," even after four court hearings, "with a single piece of medical evidence to show that their son's diagnosis was incorrect or that there is a viable treatment option" beside chemotherapy, the guardians' four-page statement says.

"It's not about usurping parent's rights," Mills said. "It's about protecting the child so the parents can keep him."