The parents of critically ill children insured by Medi-Cal once had to choose between ongoing treatment and end-of-life care. A program to offer a third option, community-based palliative care, was launched in California in 2009. The program not only improves the quality of life for sick children and their families, a recent report found, it also saves the state money.
The Partners for Children program provides families benefits including care coordination, respite care, home visits from a nurse every 30 to 60 days to assess pain and symptom management and in-home massage, music and art therapy. The program, funded by a Medicaid waiver, started providing services in 2010. Nine counties currently offer benefits under the program.
Those services have already made a big difference for Debra Zelbin’s daughter Anna, who was diagnosed with a rare form of muscular dystrophy when she was three years old. Before she was enrolled in Partners for Children, frequent and disruptive hospitalizations were a fact of life for Anna, now 8. Since enrolling in the program 18 months ago, Zelbin said, her daughter’s condition has stabilized, with only three hospitalizations.
“Getting back into a normalizing routine has been great,” said Zelbin, who lives in Costa Mesa and receives services for Anna through the San Diego Hospice.
The movement for palliative care for children is relatively new, said Devon Dabbs, Executive Director and Co-Founder of the Children’s Hospice and Palliative Care Coalition, an advocacy group based in California. Palliative care seeks to relieve the symptoms of serious medical conditions and improve quality of life for patients and their families. Hospice care is a form of palliative care offered to terminally ill patients at the end of life.
Hospitals have been increasing their pediatric palliative care services for about five to six years, Dabbs said. But before Partners for Children, there was no way to pay for palliative services for children who continued to live at home.
Instead, Medi-Cal required the parents of sick children to sign a form saying their child would die within six months and to stop treatment before they would pay for end of life care at a hospice. “It was a choice between care and comfort,” Dabbs said.
That is a particularly difficult choice for a parent to make about a child, she added. “When it is a child, you are wanting to hold onto the possibility of a miracle,” Dabbs said. “To me, it seems unfair to take that away.”
Partners for Children seeks to keep care community-based with the combination of in-home services and a close relationship with the child’s medical team. That’s important for children’s health, said Terri Warren. She’s the CEO of Trinity Hospice, which offers palliative services to children in Los Angeles and Orange counties through the Partners for Children program.
Children who need palliative care, Warren said, suffer from conditions including trisomy 21, a form of down’s syndrome, cystic fibrosis, cancers, heart disease and lung and kidney diseases.
Before the Partners for Children program began, families had a hard time accessing care when their kids became critically ill after regular business hours, Warren said. That forced many parents to call 911 or drive their children to the emergency room if they spiked a temperature or had another problem at night. The travel could be painful and stressful for sick children, and the hospital exposed them to germs that also put their health at risk.
“It just wasn’t smart medical care,” Dabbs said.
To help keep kids at home, the palliative care program offers a 24-hour advice nurse. The nurse helps parents decide if a trip to the ER is necessary, and helps coordinate care if the child has to be admitted to a local hospital that does not routinely treat children with complex medical needs.
Hospital trips are also more expensive than in-home care, said the recent evaluation of the program, authored by researchers at UCLA and funded by the California HealthCare Foundation. Before the Partners for Children program, hospitalizations accounted for 65 percent of medical expenditures. That dropped to 47 percent after the program. Spending on outpatient care increased, but the program still resulted in a total savings of about 11 percent per child on average.
Families report that they are very happy with the program, rating the program overall at 9.6 on a scale of 1 to 10, where 10 indicated excellent care. Care providers were less satisfied with the program, rating it at a 7.8 on a scale of 1 to 10. Both the report and Dabbs note that the likely cause of provider dissatisfaction is Medi-Cal’s low reimbursements rates.
Debora Zelbin said that in addition to keeping her daughter Anna out of the hospital, the in-home services have helped to ease her physical and emotional symptoms. Anna wears a patch that delivers a constant dose of narcotics to help her manage the pain she feels as a result of her muscular dystrophy. The massage therapy she now receives helps to relieve the pain in her legs.
Anna also receives counseling through Partners for Children, which has helped her to adjust to being different at school. “It’s great to have another person she can trust, be with and confide in,” Zelbin said. Anna is sensitive, she added, and without the support the stress wears on her body, and she becomes more symptomatic.
The support has been a boon for Zelbin and her other children too. Anna’s care coordinator comes to doctor’s appointments and school meetings to advocate for her daughter, so she no longer does all of the work by herself. Since enrolling in the program, help and advice have been a phone call away. And few hospitalizations means she is at home more with Anna and her brother and sister.
Parents like Zelbin are usually adept nurses and care coordinators themselves by the time they enrolled in Partners for Children, Dabbs said. “Having additional support allows them to let go of being a nurse and just parent,” she said.
Current funding for the program ends in September, Dabbs said, but she expects it will be renewed this fall, with the potential for an option to expand the program to 14 additional California counties.