Parents of seriously ill twins will urge schools to adopt 'hospice protocol'

February 24, 1994|By Lan Nguyen | Lan Nguyen,Sun Staff Writer

Twins Joey and Ian Joyce aren't expected to live past their next birthday.

The 9-year-old brothers suffer from Batten disease, a rare illness that slowly destroys their nervous systems. They're given only a 10 percent chance of living to age 10.

As grim as the statistics are, their parents, Rosemarie and Michael Joyce of Ellicott City, have accepted the inevitable. But they want their sons to enjoy their lives while they can, including school. The twins attend Columbia's Cedar Lane School for severely physically and mentally disabled children.

But Mr. and Mrs. Joyce, active in lobbying efforts to increase federal funding for Batten disease research, fear that if the day comes that one of their sons has a severe seizure at school, paramedics may use extraordinary, life-preserving techniques.

Their sons were diagnosed with Batten disease when they were 4. The boys became legally blind and lost the ability to speak by the time they turned 6. Now, rarely responding to their parents' voices, they wear diapers and must be fed through surgically inserted stomach tubes. Their parents tend to them three to four times a night.

The Joyces have two other sons, Andrew, 6, and Conor, 11. Both are healthy.

Mrs. Joyce, a nurse, knows the ethical and moral dilemma involved with taking a patient off life-support systems.

"I don't ever want to get to that point," Mrs. Joyce says.

The couple plans to testify at today's 4 p.m. school board meeting, urging the school system to adopt a "hospice protocol," which would forbid school employees and paramedics from resuscitating terminally ill students who have a life-threatening emergency.

These students would have to be enrolled in a hospice program and have with them at all times a Hospice Network of Maryland Documentation Card that instructs medical personnel not to give CPR or use other life-prolonging methods in the event of an emergency.

The protocol proposal would still allow school employees and paramedics to provide supportive services -- for example, giving oxygen when students have respiratory problems.

The proposal also would require training and counseling of a school's staff before a "do not resuscitate" order is recognized, and principals would have the right to refuse to implement the policy at their schools.

Mr. Joyce says he understands the school system may have a difficult time adopting the policy. "Nobody wants a child to die," he says. "That's natural you don't want that to happen. It's tougher for school systems to admit that some of those children are going to die.

"Look at these children in there," Mr. Joyce says, motioning his arm toward the room where his sons sleep on a sofa. "What's the quality of life for them? They can't speak, they're blind, they sleep most of the day . . . they're mute. Their brains are being destroyed. There is no cure."

Not many school systems have a hospice policy comparable to what Howard is proposing, though Frederick and Baltimore counties are looking at the issue.

Nancy Weber, head of the Hospice Services of Howard County, expects more school systems to follow suit because of federal law mandating inclusion of disabled children into classrooms.

"My guess is as school systems see more and more of these children enter their program, it's going to be something they confront and address," Ms. Weber says. "Howard County . . . has the reputation of giving incredible care to medically fragile students, so many families are moving to the county just so their kids can go to school here."

For Mr. and Mrs. Joyce, the hospice policy would give them comfort and assurance that their sons will die with dignity.

The couple has enrolled the twins in a hospice program at the Johns Hopkins Children's Center in Baltimore and their sons carry plastic laminated documentation cards with instructions for emergency medical personnel not to initiate CPR.

"As long as they're in this state, we'll take care of them," Mr. Joyce says. "We love them. But when the time comes, I won't allow them to be hooked up on any machine."

"We feel Ian and Joey certainly won't ever be able to get their functions back," Mrs. Joyce says. "They're at a stage right now that things are going to degenerate. There's nothing we can do about that. All the care we can give is supportive."

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