Providence Children’s Hospice Advocates and Families Lobby in Sacramento for Pediatric Hospice Program
December 18, 2013
LOS ANGELES (April 12, 2012) -- The little boy, wrapped like a mummy, would cry in agony every few days as his mother and a nurse changed the bandages that protect him from infection. He dreaded outings because it meant possible contamination and another horrific session of applying clean bandages.
Terri Warren, director of Providence TrinityKids Care, the only pediatric hospice service covering Los Angeles and Orange counties, recalled “blood-curdling screams” from the youngster, who was born with a degenerative skin disease.
“We tried pain medications to relax him, it didn’t help,” Warren said. “One of the nurses suggested complimentary therapies, and that worked!”
A child life specialist used distraction techniques including play therapy and exercises aimed at focusing the mind elsewhere. The child, who previously had rated his pain at 200 on a 1-10 scale, changed that rating to a 4 after this treatment.
Providence TrinityKids Care was able to help this child and his family under a state pilot program that that waived criteria for certain Medi-Cal pediatric patients who suffer terminal illnesses, but are not believed to be in their final six months of life. Warren, the child’s family and others from TrinityKids Care traveled recently to Sacramento for three days of meetings with legislators and hospice advocates. Their goal is to see the three-year pilot program, now in its third year, extended.
“The pilot program allows a hospice program to provided palliative intervention to children outside the six-month prognosis,” Warren said. “Under this program, we can care for children for years, not just in the terminal phase of the illness. These are kids who are not going to survive. They have genetic disorders, cardiac disease and other conditions you only see in medical textbooks.”
Very few organizations statewide offer this specialized treatment for critically ill children. The care given by TrinityKids Care and other pediatric hospice groups provide the platform for the state to extract data to ensure service for these patients.
The program didn’t go live in Los Angeles County until November, and since that time TrinityKids Care has served 18 children who meet the criteria and five more have been referred.
Warren is hoping lessons learned from by her organization and colleagues across California will help tweak the program. California Children’s Services, the state Department of Health Services and the U.S. Center for Medicare and Medicaid (Medi-Cal) Services are participating. Warren is vice president of the board of the Children’s Hospice and Palliative Care Coalition, an advocacy group that also is involved in the effort to make the pilot program a permanent service.
“Some, of these conditions these children live with her are astounding,” said Barbara Roberts, executive director of the Providence TrinityCare Hospice Foundation, which raises money for the nonprofit organization. “It’s so important to keep highlighting the need for pediatric palliative care and for hospice.”