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HOSPICE CARE FOR CHILDREN FOCUS OF NEW PROGRAM AT UC DAVIS

 "" PHOTO — Pediatric oncologist Ted Zwerdling provides hospice support to terminally ill children and their families.
 
Pediatric oncologist Ted Zwerdling provides hospice support to terminally ill children and their families.
   

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."

Collaboration at its best

The Markie Foundation was established in July 1999 during the final days of 4-month-old Mark Warren Wuelfing's life. "The support has been overwhelming since the day we established it," says Joe Wuelfing, Mark's father, who co-founded the organization with his wife, Janis. "We originally thought it would just be our family and friends, but people from all over the country have contacted us, after learning about us in some way."

The Markie Foundation recently passed the $100,000 mark in funds raised for children's hospice. "It's really an extension of our son's life — to see his life and spirit continue through the foundation," says Wuelfing. "At a conceptual level, we are trying to support programs that will allow families to spend those precious last moments with their child in comfort."

Wuelfing also says the foundation likes to see the results of its giving. "We make sure we're donating to things that are tangible," he says. For example, in January, the foundation gave $20,000 to UC Davis Children's Hospital to sponsor a children's hospice symposium.

"The conference brought in nationally renowned hospice experts and was a big step in broadening awareness of pediatric end-of-life issues in Northern California," says Karen Charney, development officer for UC Davis Children's Hospital. "We are grateful that the Markie Foundation has partnered with UC Davis to support a much-needed regional hospice program for children and their families."

Wuelfing is pleased with the collaboration. "We're fairly grassroots, and being able to have a partner with the level of expertise that UC Davis provides has been tremendous," says Wuelfing.

For more information about the Markie Foundation or other giving opportunities as UC Davis Health System, contact Health Sciences Advancement at (916) 734-9418.

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."

Key differences

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 pediatric patients.

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."

Enhancements planned

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 says.

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."

 

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  "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." — Ted Zwerdling  
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