Hospice aim: Coordinated care for terminally ill children

Parents of more than 100 children who died of cancer in the early 1990s told researchers that 89 percent of the children suffered "a lot" or "a great deal" during the last month of their lives.

Pain, fatigue, trouble breathing, loss of appetite, constipation and diarrhea were the children's most common symptoms -- and less than a third of those treated felt better.

Causes

In other cases, she said, "parents don't opt for Hospice because they feel like they're letting the child down, giving up on them."

The Community Hospice is working to change that attitude. Between 100 and 150 children per year die in the seven counties (out of 14) of the Albany Diocese served by The Community Hospice. Rather than "giving up" on a terminally-ill child, medical director Dr. George Davis would like Hospice care seen as a continuation of the medical care that's already been given.

Often, he said, there is an abrupt transition from aggressive treatment of a child's illness to Hospice care. This can perpetuate the idea of Hospice as "giving up."

Jamie's story

However, Hospice care can improve the time a child with a terminal disease has left. In Jamie's case, Ms. Curtis said, feeling "so taken care of" in body, mind and spirit has made the eight-year-old behaviorally better. With her symptoms under control, she can accept visitors and even check in at her school sometimes.

"Her family is delighted that this is a plateau they can enjoy together," Ms. Curtis said.

Jamie's parents, she added, have joined an internet support group for parents of terminally-ill children, and communicate by e-mail with fellow parents all over the country.

Special program

The child's perspective is important; one scrapbook urges kids to write "some of the things I would like my Hospice team to know about me," from favorite things to wishes.

When a child is sick, said Community Hospice executive director Phil DiSorbo, "the family has to really be the unit of care, not [just] the patient." He said that children get an "enhanced array" of services, including visits from social workers specially trained to work with kids and families.

The Community Hospice also offers services for children who aren't sick themselves, but have a family member who is. Scrapbooks like "My Journal and Special Memories" help the children to write about their feelings and explain how grief can affect them, from stomachaches to nightmares.

Hospice's "Wave Riders" program also helps grieving kids in groups, using art, music and conversation to support them in their loss. The groups are designed for children from kindergarten through third grade and fourth through ninth grade.

Many services

"A lot of people are not aware that Hospice does take care of children," Dr. Davis remarked. Even when a child is still receiving treatment for a terminal disease, he said, "Hospice has to become involved. We're going to maximize the time we have left, and help the family deal with that."

(Contact The Community Hospice at 285-8150. For information about the Wave Riders program, call 581-0800.)

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