Dealing with the death of an adult family member is hard enough, but when it’s a child with a life-threatening illness the complicated emotions can be even more trying.
That’s one of the reasons a new Portland-based program is working to develop a network for pediatric hospices across Maine.
The Jason Program is spearheaded by two women who each knew young men named “Jason” who died early in life. Marie Aikin had known a Jason in Maine. Kate Eastman, now executive director of the program, said she pledged her life to helping ill children while sitting at the bedside of the Jason she knew in Texas during social work training.
The program is setting up medical, hospice, social worker, clergy and volunteer experts in Portland who will help hospices establish programs to serve ill children up to 18 years old. That’s the segment of the population that traditionally hasn’t been the focus of hospices, which help people with pain and dying.
“We do know that there are a lot of children in Maine who may be dealing with a life-threatening illness and that they could benefit from the care Hospice provides,” said Kandyce A. Powell, executive director of the Maine Hospice Council.
Eastman estimates that as many as 250 children die of illnesses in Maine each year. For each child who dies, typically 300 other people in the community are affected including parents, family, extended family, neighbors, schoolmates and community members.
“There is a ripple effect of grief when a child is ill and many people are affected,” Eastman said. “By creating networks of support, we meet the needs of not simply the child, but all of those affected. Simply put, ‘It takes a village to bury a child.”‘
Four children are already on the waiting list for a pilot project being developed for Aroostook County, said Robin Holmes, coordinator of a new program in Presque Isle.
Holmes, who is also the hospice volunteer coordinator for Visiting Nurses of Aroostook – which is not affiliated with the pilot project, said the idea of providing a hospice and bereavement network for children and their families took root about two years ago. Then, after attending conferences on the subject and talking with Eastman, the program began to take shape, Holmes said. Dr. Holly Arato of Fort Fairfield has agreed to serve as medical director for the project, Holmes said.
In late October about 60 volunteers from The County took part in Jason Program training. The program will be doing fund raising and looking for other support and could be running by spring, Holmes said.
Because there has been little support in working with children with life-threatening illnesses, many hospices have been reluctant to promote pediatric service.
“Most of the hospices would be very willing to serve children and their families, but I have to tell you we’re very lacking in knowledge to do so,” said Pat Eye, director of New Hope Hospice in Eddington, which will participate.
“This is something that’s so badly lacking in our state,” Eye said.
The challenge of working with children is that they have not yet come to understand death. Consequently, it’s important for those working with them to clearly understand the emotional differences between the young and the mature, she said.
For example, volunteers in the Aroostook pilot have been advised never to talk with parents or family members as if the ill child isn’t in the room.
“You’ve always got to be respectful of the child,” she said.
Holmes also said that hospice workers have to believe a child who complains of pain. Sometimes parents may dismiss a complaint saying the child had a good day, when in reality the child needs to be heard, she said.
The differences between adult and pediatric hospice services also apply to dealing with family members’ reactions.
Society is much more understanding when an older person is dying than when a child is, Holmes said.
Faced with a seriously ill child, parents often pursue aggressive treatment. That can complicate a decision on seeking end-of-life care.
“There’s a reluctance on an adult’s part to say it’s time for hospice,” Eye said. That’s one of the reasons so few referrals for pediatric hospice are now made, she said.
The program offers many benefits beyond helping the patient with pain management and with getting ready to die. Holmes said services could include mowing the lawn for a parent who’s suddenly overloaded.
The expansion of pediatric hospice care in Maine is coming at a time when the issue of end-of-life care is very much in the public eye. Many in Maine’s hospice and medical establishments argued against the recent referendum on physician-assisted suicide saying that hospice care should be pushed first.
An omnibus bill being prepared for the Legislature would create a Medicaid benefit to cover hospice care.
Holmes said the attention to adult hospice pays dividends in working with children as well.
“It’s making it much easier because at least people are getting it on the table and talking about death,” she said.
That’s important for the fledgling programs. Presque Isle needs “thousands” of dollars before formally launching its services and the Jason Program itself has raised just $30,000 in an effort that could easily use $500,000 a year, Eastman said.
Anyone interested in helping the programs may call the Jason Program at 829-3537 or e-mail email@example.com. For the pilot program in Presque Isle call Robin Holmes at 800-464-5762.