Utah Gives Dying Children a Choice

Two years ago the Utah legislature authorized use of do-not-resuscitate orders for terminally ill children after discharge from the hospital.

The new directives operate on the same model as those for adults, with the additional requirement that two doctors sign for them instead of one.

Despite that added requirement, the law still gives parents of terminally ill children in Utah a choice. It’s a choice that Iowa parent Diane Wiederholt, whose 12-year-old daughter Maggie died this past February after a lengthy illness, thinks Iowans should have.

An obscure Iowa law prohibits terminally-ill children and their parents from obtaining do-not-resuscitate orders after their discharge from the hospital, confronting them with a possible life or death dilemma if the sick child later experiences pain and suffering during an emergency.

Utah and a majority of other states all permit such pediatric do-not-resuscitate orders. Such laws are backed by the Academy of Pediatrics, the nation’s largest association of pediatricians.

Wiederholt thinks Iowa’s law should be changed.

“You can bring a child into the world in your home, and allow them to take their first breath, and that’s legal, but you can’t allow your child to take their last breath in their home,” she said.

Maggie let the Quad-City Times follow her last month for an extensive multimedia series, because she did not want any child to go through what she had to go through, her mother said. After spending more than nine months at the University of Iowa Children’s Hospital, she said that Maggie wanted to die there because “that was her home.”

“If Maggie wanted to die on the moon we would do it somehow,” Wiederholt said.

“People have told me she was not old enough to decide her fate, but I think any child who is chronically ill is born with a very old soul. At the ripe old age of two, Maggie knew she wasn’t going to live forever,” she said.

“To me, it’s totally unreal that that law is out there.”

In Utah, a terminally ill child’s out-of-hospital-do-not-resuscitate order is always close by in case of an emergency.

Utah’s Emergency Medical Services for Children issues a tube to store such an order, along with the patient’s histories and current medications. EMS personnel are trained to look for this tube, which the child carries in a backpack when away from home.

Dr. Armand Antommaria, a pediatrician and chair of the ethics committee and ethics consultation service at Primary Children’s Medical Center in Salt Lake City, said that while Utah’s revisions were an improvement over the existing law, the legislation only provides legal protection for healthcare providers and not for others who may initiate resuscitation efforts.

He pointed to the policy statement of the Academy of Pediatrics, which encourages physicians to support legislation that would provide legal immunity to teachers, principals and school nurses who withhold resuscitation for a child with a do-not-resuscitate order, in addition to protecting healthcare providers.

But, because schools emphasize training employees in CPR, officials worry they would be held liable if they did not provide CPR to any child.

Antommaria emphasized that children with life limiting conditions should continue school, interact with friends and maintain a sense of normalcy. “It’s awful [for parents] to have to make the decision, ‘well do I let my child go to school and they might get CPR they don’t want, or we hold them from school and they don’t get the benefits of going,’” he said.

Nevertheless, other physicians say legislative responses have limits. Dr. Lauris Kaldjian, associate professor of internal medicine and director of the program in bioethics and humanities at the University of Iowa’s Carver College of Medicine, said people should be sensitive to the limitations of law and the state’s desire to avoid incurring liabilities by enacting legislation that is too permissive.

Although Kaldjian declined to express his opinion on the issue, he said legislators must craft laws with a sense of policy for large populations.

“Law is never going to be as fine-tuned as ethics carried out by real people,” he said. “In order to play fair across a population, sometimes we can’t legislate everything the way a doctor or nurse would want.”

(Gabe Gao, a masters student at the University of Iowa School of Journalism and Mass Communication, covers health and medical issues for the Iowa Center for Public Affairs Journalism.)