There is likely no greater tragedy in life than losing a child to terminal illness. But a new
pediatric hospice program at UC Davis Medical Center and Children's Hospital is now available to help
families through the experience.
"This is not just about dying," says Frederick J. Meyers, professor and chair of internal medicine
at UC Davis School of Medicine and Medical Center and medical director of its home health and hospice
program. "This is about relief of suffering, expanded choices including simultaneous disease
treatment and palliative care and effective bereavement for the entire family."
Area's only program
Although the existing adult hospice has been open to children and their families since the 1980s, the
pediatric emphasis is an important factor, one the community may not know about. "It's the only program
of its kind in town, with a pediatric interest and pediatric expertise," says Ted Zwerdling, associate
professor of pediatrics at UC Davis Children's Hospital and associate director of the hospice program.
"Just as a 40-year-old wouldn't see a pediatrician for his or her ailments, a child shouldn't be
seen by an internist. The differences between an adult hospice and pediatric hospice are really quite
profound. In the adult model, we are largely caring for the patient and maybe a spouse, but in the pediatric
model, we are looking at siblings, mom and dad, aunts and uncles, and grandparents."
There is also, of course, a difference in how the medical staff relates to patients. "The ways we
approach children at the ages of 3, or 8, or 15 are very different," says Zwerdling. "If you
have a 5-year-old child who is dying, you have to first determine when children begin conceptualizing
death. You have to meet the very significant developmental needs children have."
Zwerdling says medical treatment and symptomatic controls can vary greatly between adult and pediatric
populations as well, including medications. "If you're not aware of these things, you can have problems,
such as providing too little medication," he says.
Another issue involves federal regulations governing admittance to general hospice care, which include
a six-month prognosis and an agreement to discontinue life-sustaining treatments. But these are not always
appropriate for children with serious disease. "People know children die, but what they don't know
is they sometimes have to jump through hoops to get into a hospice program," says Stacey Magee, hospice
manager. "Some families don't have the option because the standard rule is that you stop all curative
therapies. You're not going to do that with a child."
In fact, Magee says national legislative work is under way to allow a waiver of these regulations for
Although hospices across the nation are strapped for funding, the need for these services is great. "According
to Vital Statistics for 2002 in Sacramento County, about 150 children died in that year," says Zwerdling.
"Half of those were sudden death, but that still leaves as many as 75 children a year who might need
hospice services. We're talking now with other hospitals in town to see how we can support their patients."
To provide care for these patients and their families, Zwerdling has a long and innovative
wish list. "We plan to develop a pet visitation program," says Zwerdling, "as well as massage
therapy, music therapy and aromatherapy."
The hospice staff is applying for grants to help fund the program. The program has also received gifts
from various volunteer organizations, including a group of Harley-Davidson riders who donated $5,000 last
year, and a $20,000 gift from the Markie Foundation. The latter helped sponsor a symposium on pediatric
hospice issues, hosted at UC Davis Medical Center in January. "We're trying to educate the community
and get people thinking about families and children and the kind of expert care they need," Magee
Meyers is excited that this specialty will enhance UC Davis' teaching program. "Dr. Zwerdling has
just been a breath of fresh air to our program," he says. "And he has a real commitment to pediatric
residents. The fact that we can train young people in pediatric hospice care that's important too."