Horrified to learn that school personnel might be expected to carry out do-not-resuscitate orders for some of the “medically fragile’’ children they serve, the Bangor, Me., school committee last week approved a policy requiring school staff members to provide life-sustaining, emergency care to any student who needs it, regardless of parental orders to the contrary.
The new policy--and a similar one approved weeks earlier in neighboring East Holden--are thought to be among the first of their kind nationally. But experts say school districts nationwide may face similarly complex medical and legal questions as growing numbers of children with serious medical problems come to school.
Under federal special-education law, children with disabilities or serious medical problems are entitled to public schooling.
The Southern Penobscot Regional Program for Exceptional Children, which provides centralized special-education services for schools in Bangor, East Holden, and 27 other communities in the region, has served medically fragile children since 1979. Those children are typically taught in separate classrooms in regular schools where employees are trained to provide some of the special services they need, such as catheterization or suctioning of tracheotomy tubes.
However, Bangor school officials said they were unaware some children had do-not-resuscitate orders until early fall. The issue arose when the director of the Elizabeth Levinson Center, a local state-run residential facility where some of the children live, informed them they would be expected to comply with an order in the case of one student.
School officials then discovered that authorized orders existed for three other students who have deteriorating medical conditions or painful terminal illnesses. One student has since died in a hospice.
“We were uncomfortable,’' said Murray Shulman, the director of pupil services for the Bangor schools. “We did not feel it was appropriate that a school facility would be required to follow those kinds of orders.’'
‘Reasonable Steps’
Under the policy, approved by the school committee on Dec. 7, appropriately trained staff members must summon emergency help and take “all reasonable steps’’ to provide life-sustaining care when a student’s life is at risk--even if that means overriding do-not-resuscitate orders.
Such “reasonable steps,’' the policy says, might include stopping bleeding, unblocking airways, and providing mouth-to-mouth or cardiopulmonary resuscitation.
In practice, however, the do-not-resuscitate orders for the students in question applied only to cardiopulmonary resuscitation, said Joanna Dotts, the pediatrician for two of the students. That technique, which involves pounding on a patient’s chest and invasive procedures, is increasingly viewed as inhumane for patients with painful terminal illnesses.
Neither the parents nor officials at the Elizabeth Levinson Center opposed the new policy. But Kathi Murray, the center’s director, said that some of the parents were frustrated by the school committee’s action.
“They’ve spent many years making these decisions and they’re not easy to make,’' said Ms. Murray.
But, she added, “We’re just trying to say to schools, ‘Fine, do what you need to do.’ ''
After seeking legal advice, Dr. Dotts said, center officials also concluded that the parental orders applied only to medical personnel.
Bangor school officials said a policy was needed, however, to provide some direction to staff members who work with the children.
Moreover, they said, they feared the school system could become liable for a “wrongful death’’ lawsuit if a student was left unaided to die on school property.
Concerns were also raised about the impact of such a death on staff and students.
“You can imagine the effect on a child if someone is dying and nobody helps,’' said Martha Newman, the director of the school committee.
A Coming Concern
Nationwide, experts said, they know of no other school districts confronting the question of do-not-resuscitate orders for medically fragile children. However, they predicted the issue could become more prominent as medical advances enable growing numbers of such children to live longer and to attend school.
According to a report by the Congressional Office of Technology Assessment, 17,000 children nationwide in 1987 depended on medical technology to survive. The number of children who fall into the broader category of medically fragile, which also includes children with AIDS, for example, is thought to be greater.
“In the eyes of the law, schools are special places and education is their primary mission,’' said Ellen Moskowitz, a lawer at The Hastings Center, a health-policy think tank in Briarcliff Manor, N.Y.
“Nonetheless, at the very least, it seems you would want schools to think very carefully whether there was a way to accommodate the wishes of these very sick children,’' she said.
The issue becomes more complex, she said, concerning medical personnel in schools. She said school nurses, for example, might be bound by a do-not-resuscitate order.
In Bangor, school officials ended a contract with a nursing agency because its officials said their employees would honor parental orders. The agency had provided a nurse to accompany a child on the bus ride to and from school.
District officials also said the four school nurses on staff must comply with the new district policy.
However, emergency-medical personnel who might be called to the scene must follow parents’ wishes, Dr. Dotts said.
