You don’t usually hear “palliative care” associated with children. That’s the term generally used for adult patients in hospice, where severely ill people are brought home to live their final days.Â
A new pilot program brings palliative care home to some children with serious illnesses.
“Palliative care is not end-of-life care,” said Devon Dabbs, executive director and co-founder of the Children’s Hospice and Palliative Care Coalition (CHPCC), which runs the pilot program. “The challenge with palliative care is that the definition is confusing. It’s often associated with end of life, but really, palliative care is just good care.” Palliative care generally deals with relieving and preventing suffering.
The pilot program, Partners for Children — a joint partnership of CHPCC and the state Department of Health Care Services — brings care to the home for some children with serious illness. Keeping those children in the home environment not only increases quality of life for those children and their families, but also results in better outcomes for those children, according to a study recently released by the UCLA Center for Health Policy Research.
The study also found significant cost savings associated with the pilot program.
According to the UCLA policy brief, the state saved $1,677 per child per month with the Partners for Children program, roughly an 11% decrease in spending. In part, that’s due to one-third fewer days spent in the hospital by children in the program.
“This is something we’ve been talking about anecdotally for years,” Dabbs said. “We know kids want to be home, we can see how this improves their well-being, but we haven’t had any cost data to prove it. This is the first time we’ve had a study like this, with the validated cost data. And that’s tremendously exciting.”
Holy Grail of Reform
“The general findings are that the program improves quality of life, and at the same time we saw significant cost savings,” UCLA researcher Daphna Gans said. “The preliminary results are promising for providing this kind of care not only in the final months of life but earlier; it could really be beneficial to families, and to the state.”
Gans said the ideal outcome of health care reform is to improve quality while cutting costs, but that nexus can be elusive.
“That’s why this is so encouraging and very exciting, because we were able to show both,” Gans said. “The other thing that’s very encouraging is that we saw a robust cost savings across all kids, and it was a diverse set of kids. Usually you would guess that one type of population is more costly.”
To Gans, it was the improvement in care and patient satisfaction that was the most striking.Â
“This is a difficult population to show any improvement in quality of life, because these kids are very sick,” she said. “So for their parents to say, absolutely, the quality of life is improved, that’s remarkable.”
The pilot program was launched in February 2010. Gans is working on a full three-year report on the project, in which she hopes to break out more specific details — variations among subgroups, such as ethnicity, race, specific diseases, as well as rural or urban location.
“By June 2013 we would get all of that data,” said Gans, who expects to have a full report out in the fall of 2013. The pilot program is designed to be a three-year project, but organizers want to renew the program for an additional five years, starting next year. CMS is reviewing that proposal. If CMS approves the proposal, the current program, which serves children and their families in 10 counties, would expand to 14 additional counties.
How It Works
Partners for Children uses community- and home-based services to manage care, including pain management, respite for families, symptom management, a 24-hour nurse advice line and a variety of counseling services.Â
“So if they’re showing signs of respiratory infection, for example,” Dabbs said, “they’re able to identify that and initiate treatment before it turns into hospitalization.”
The program uses hospice care organizations to help coordinate palliative care for the children. “A lot of palliative care taps into the expertise that hospice agencies have,” Dabbs said. “Things like pain and symptom management, and emotional and psychosocial support.”
The experience of the patients and their families echoes some of the hospice experience, she said.
“There is still a lot of loss that comes with being diagnosed with a life-threatening condition,” Dabbs said. “In terms of the family’s well-being and being able to move forward through this experience, that’s similar, too. You know, families feel so isolated and alone — it’s a club no one wants to join.”
Jennifer Ramirez, deputy director of CHPCC, said all the children in the pilot project come out of the California Children’s Services program in the state Department of Health Care Services. She hopes to expand the pilot’s reach to everyone in CCS who might qualify for palliative care.
“This is a small population, thank goodness,” Ramirez said. “But it’s a much larger population of kids within CCS. Right now there’s about 180,000 covered by CCS, so even if we’re only talking 10% to 15% of those kids, that’s a large group of kids.”
Almost all of the severely sick kids have one trait in common, Ramirez said.
“All the kids want to be home,” she said. “That’s where they want to be. We want to make sure they can go to the hospital, of course, when they need that, but really they want to be home as much as possible.”
Children do better in the comfort of home — and, Dabbs said, sometimes they are cured there.
“We’ve had kids who’ve graduated from this program,” Dabbs said.
Federal regulations do not allow palliative care for children. That’s why California had to get a federal waiver from CMS to create the pilot program. Several other states have created similar waiver programs. Florida’s program has been operating for about nine years.
Eventually, Ramirez said, she hopes this kind of care could be expanded beyond its current narrow confines.
“Our hope is that, through continued research and data, we could make this standard of care in California,” she said. “Of course, we have a long way to go. We can remain a waiver, but we hope that it becomes standard of care eventually.”
The other avenue that could open for palliative care is telemedicine. “One of the things people don’t know is that children are treated at the children’s hospitals — not the nearby hospital — so they’re often long distances from the hospital,” Dabbs said.
“So yes, I would love to see telemedicine. We still need to see what resources they have, what’s working, what we’re learning — but to be able to bring telemedicine to the forefront would be huge.”