Caldwell County Schools ask: Is it ever OK to let children die?

Proposal could mean defying parents, medical order
Sep. 21, 2013 @ 08:31 AM

The Caldwell County Board of Education is considering a policy that would bar school personnel from complying with Do Not Resuscitate orders, so that district employees would not allow children to die at school even if their parents request it.

A Do Not Resuscitate order, or DNR, is a request that medical professionals not perform CPR or otherwise resuscitate a patient in the event of cardiac or respiratory arrest. Pediatric DNRs are common in hospitals and other medical settings, but some parents of severely ill or disabled children in other parts of the country have asked their local school districts to honor them. 

Caldwell County superintendent Steve Stone said there is no student in this county he knows of whose parents have made a DNR request.

Doctors often sign DNRs for children who have terminal illnesses, but they may also be signed for children with severe disabilities who are so fragile that CPR or other resuscitation efforts would hurt the child more than it could help, said Jamison Presnell, patient care coordinator for Hospice and Home Care of Alexander County.

"If the patient has a terminal diagnosis, especially with cancer patients, they've been through the mill with chemo and radiation, and yet their bodies are still eaten up with cancer," Presnell said. "So if you have a thin, frail person that's dying and you start CPR and things like that, then the end outcome is going to be the same. CPR is not going to cure that. I guess the way I look at it is, if the quality of life is not going to be any better, then why put somebody through it?"

Children with terminal illnesseses such as cancer are eligible for homebound instruction but sometimes keep attending public school on a part-time basis, said Pam Mange, director of the pediatric program at Hospice and Palliative Care Charlotte Region and a former member of the Mecklenburg County school board.

"A lot of parents still choose to send their terminally ill student to school, even if it's for an hour a day, because going to school is part of a normal life and they want their child's life to be as normal as possible," Mange said.

The proposed Caldwell policy, which is open for public comment until the school board's next meeting Monday, Oct. 14, acknowledges that “because of the complexity and severity of the medical conditions of medically fragile students, parents/guardians sometimes may request that school personnel not resuscitate a child in the event of cardiac or respiratory arrest” but holds that district employees will not honor DNR orders.

“It is the intent of the board that the underlying principle of any response to a DNR request be that no student is to be denied the fullest genuine, appropriate efforts to preserve life,” the policy reads. “Therefore, school system employees shall not honor DNR orders.”

The proposed policy was not prompted by an incident within the Caldwell County Schools, Stone said. Having a policy on DNRs was the suggestion of an attorney with the North Carolina School Boards Association, who has been working with the Caldwell school board for several months to review the district's full policy manual.

“We need that to be out there publicly, that we’re going to do everything to save that child’s life, even if it means that we go against a request from the parent,” Stone said.

The school boards association does not recommend a particular stance on DNRs, said Janine Murphy, assistant legal council with the association.

Mange said the decision to sign a DNR is never easy for families, whether their child is terminally ill or developmentally disabled and fragile.

"It's a very, very difficult decision for families to make," she said. "They do not reach this decision lightly. After much education, they realize ... that resuscitating the child would cause more harm and suffering with no benefit."

Advocates of the type of policy that Caldwell is considering say schools face different considerations  – and have different staffs – than the medical institutions that typically accept DNRs.

"Schools are reluctant to put a teaching assistant or someone who's helping out in the classroom in the position where she felt like she was making that decision," Murphy said. "It might be stressful for other children in the room if they sense that the adults present in the room weren't proactive, that they weren't doing everything they could."

At the board meeting Sept. 9 when the policy was introduced, school board member Dottie Darsie said she supported it.

“As a general rule, the staff in our schools are nor medical professionals,” Darsie said. “To ask them to make this type of decision I think would be very unfair to them and very unwise.”

School board vice chairman Tim Hawkins said he had spoken to a nurse employed by the school district who was “very relieved” the board planned to take a stance against honoring DNRs.

Individual school systems have been adopting DNR policies since at least the late 1990s. A 2005 study sponsored by the Children’s Hospital of Philadelphia and the University of Pennsylvania found that among a random sample of school districts across the United States, 20 percent had DNR policies. Among those that did, 63 percent prohibited school employees from honoring the orders, while the rest allowed staff to honor them.

In 2007, a debate swirled around do-not-resuscitate orders in Lake County, Ill., where the parents of 8-year-old Katie Jones, who had cerebral palsy, requested that the school system honor a DNR for their daughter. Their request sparked a controversy within the school system. The Chicago Tribune published a profile on Katie, whose parents told reporters they wanted to face their daughter’s death on their own terms.

“The school debate underscores the struggle of parents trying to imagine the unimaginable: How will their child die?” the Tribune article read. “Will it be on a gurney tethered to a cluster of machines that sometimes only postpone the inevitable? Or will it happen in their arms?”

Ultimately, the school board decided to honor DNR requests. Katie died two years later, in 2009.

She was not at school.