Seeking less-bitter ways to end conflicts on kids' medical care

Desperate to stop doctors from operating on her ailing baby, Tina Carlsen smuggled him out of Children's Hospital & Regional Medical Center last year.

Because she'd already lost custody of her son, Carlsen's actions earned her jail time and a criminal record. And it all happened because Carlsen, like many other parents, disagreed with doctors about the right treatment for her child.

Sometimes it's the other way around, with doctors resisting parents: In a Texas case in 2005 Wanda Hudson wanted her son, born with a rare lung disease, to be kept alive artificially so she could pray for a miracle. The doctors fought her, saying the boy had no chance to live. They won, and the boy died.

What happens when such intense, life-and-death disagreements fester between parents and doctors? Can the two sides ever come together, or must courts always intervene?

Starting today, experts from around the country will convene in downtown Seattle to explore ways through those thickets during a two-day medical-ethics conference.

Called "Navigating Conflicts When Parents and Providers Disagree About Medical Care," it's sponsored by the Treuman Katz Center for Pediatric Bioethics at Children's Hospital & Regional Medical Center and the Bioethics Division in the Department of Pediatrics at the University of Washington School of Medicine.

Straight talk is best

The experts say straight, blunt talk best cuts through such thorny conflicts.

The Rev. John Paris, a Catholic priest and medical ethicist scheduled to speak both days, has a lot of experience with parents who insist on life support, such as ventilators, for their fatally ill children because they're hoping for a "miracle."

Doesn't he believe in miracles? Sure he does, says Paris, a professor of bioethics at Boston College. And he tells parents that. But he quickly adds: "How odd of God to need a vent!"

Sometimes doctors, out of empathy, don't tell parents just how grim the prognosis is, says Dr. Norman Fost, director of the bioethics program at the University of Wisconsin.

When parents and doctors disagree, there's almost always logic — and perhaps misunderstanding — on both sides, says Dr. Benjamin Wilfond, director of the bioethics center at Children's.

In the last 10 to 15 years, hospital ethics committees have proliferated, says Fost, pulling in experts and ethicists who are not involved in the particular case to help sort out the issues.

"Doctors and parents don't fight this out alone any more," Fost said. "In my experience, that's often helpful in resolving the logjam."

Sometimes, though, the only way out creates what Wilfond calls "a tragedy" on one side or the other.

From Tina Carlsen's point of view, Wilfond acknowledges, "it was a tragedy to rip up her life." But it would also have been a tragedy not to give the boy the care he needed, he says.

Toughest cases

Some of the most painful cases occur when parents refuse relatively simple surgery to correct life-threatening intestinal blockages in mentally or physically disabled children.

If doctors insist on the procedure, it's not uncommon for parents to relinquish custody of the child to the state, says David Magnus, director of the Stanford Center for Biomedical Ethics at Stanford University.

On the other side, says Magnus, it's "surprisingly common" for organ-transplant teams to avoid putting children with developmental delays on waiting lists for organs, a scarce resource that requires a great deal of attention from patients and their families post-surgery in order to be successful.

These days, says Dr. Doug Diekema, ethics consultant and education director for the Pediatric Bioethics center at Children's, it's the "more nuanced" cases that are the most difficult — the ones where the odds of a good outcome are iffy.

"Frankly, it's that middle ground where there's no consensus."

There are many reasons why parents or doctors might disagree. Parents might have cultural distrust of the medical profession, or religious objections.

Amy Kuebelbeck is scheduled to speak Saturday about her son, Gabriel, who was born in 1999 with a catastrophic heart defect. It was diagnosed in the 25th week of her pregnancy.

Some doctors advised attempting to fix the problem surgically, but Kuebelbeck considered it a "massive intervention," and experts disagreed on whether it would work. She and her husband decided it would be too much for a baby.

Kuebelbeck instead decided to proceed with her pregnancy without surgery and let Gabriel die peacefully 2 ½ hours after birth, a decision she calls "countercultural" for the medical profession because she elected not to terminate the pregnancy or have the surgery.

"They're trained to act, trained to do, God bless them," she says. "Waiting doesn't feel much like doing, but it is, in a very profound sense." For her, giving herself and her baby the "gift of a peaceful life and a peaceful death" was very healing, valuable and meaningful, she says.

Now living in Minnesota, Kuebelbeck is the author of "Waiting With Gabriel: Declining Aggressive Medical Intervention and Embracing a Baby's Life" and edits a Web site that offers support for would-be parents in similar situations.

Dr. Lanie Friedman Ross, director of the Ethics Consultation Services at the University of Chicago, says not all parental refusals are wrong.

"Doctors have to show a little humility," she said. "As some of the cases will show, we've been wrong."

Doctors' abilities to predict are limited, she says. "The question is, 'Can a doctor ever say 0 or 100 percent?' and the answer is: 'Rarely.' "

Carol M. Ostrom: 206-464-2249 or costrom@seattletimes.com