Small mercies: Program for children with life-threatening conditions shows early success

August 30, 2012 by Letisia Marquez

(Medical Xpress)—A child is desperately ill, and a family faces a stark choice: Should they try to save the child's life with therapeutic treatments, or ease the pain through hospice and other pain-relief services?

This is the current dilemma of families seeking support through Medicaid to care for a child with a life-threatening illness. Under current law, Medicaid recipients are only granted full access to both therapeutic and palliative services in the last six months of a child's life.

Seeking a better solution, California in 2009 launched a three-year , ultimately covering 11 counties, that allows families to access in-home, coordinated, family-centered pediatric alongside curative care, regardless of the child's .

As state lawmakers currently consider extending or expanding that initiative, known as the Partners for Children (PFC) program, the UCLA Center for has released a new policy brief looking at the program's impact on children's quality of life, their parents' ability to cope with an enormously stressful situation, and the overall costs of caring for this high-treatment population.

Examining preliminary data, as well as the results of a survey with a select group of affected families, center researcher Daphna Gans and her co-authors found that, on average, the PFC program saved $1,677 per child per month—an 11 percent decrease in spending. also indicate that participation in the PFC program improved quality of life for the child and the family, the authors said.

"There seems to be early evidence that giving families in one of life's most a wider range of choices is not only the right thing to do but the cost-effective thing to do also," Gans said.

Why? The authors found that the PFC program was successful in reducing the average number of days a child spent in the hospital by 32 percent through the provision of less-costly, supportive community and home-based services, such as in-home pain and symptom management, a 24/7 nurse line, family education, respite, expressive therapies and counseling.

Specifically, the study found that before participation in the program, the majority of medical expenditures (65 percent) occurred in the costly in-patient hospital setting, with only 26 percent in out-patient settings, such as doctors' offices or clinics. After enrollment, only about half of expenditures (47 percent) occurred in hospital in-patient settings, with a larger share—39 percent—in community settings. 

A survey of 33 families participating in the program showed a decrease in the reported frequency of sleeping difficulties, feeling nervous or tense, and feeling worried. Families also reported an increase in the frequency of feeling confident in their ability to care for the child.

"The data suggest that either/or is not the solution," Gans said. "Families need a broad range of choices to care for a very sick child at home, and they need it long before the child's condition becomes terminal."

Currently, the number of children nationwide living with a life-threatening condition and receiving treatment in community settings annually is estimated at half a million.

In California, as of March 2012, there have been 123 participants in the PFC program, ranging in age from less than 1 year old to 21.

Currently, policymakers are considering the advisability of extending the program beyond the 11 counties that now participate.

"We are encouraged both by these preliminary findings about the program's success and by the support we have heard from policymakers and others about the importance of sustaining and expanding this critical program," said Devon Dabbs, executive director of the Children's Hospice and Palliative Care Coalition, which funded the research. "We hope that other very sick children and their families in California will soon have the broader options offered to those already participating in the PFC program."

Explore further: Experts in pediatric palliative care to discuss challenges in this emerging field

More information: Read the policy brief: "Better Outcomes, Lower Costs: Palliative Care Program Reduces Stress, Costs of Care for Children With Life-Threatening Conditions."

Related Stories

Experts in pediatric palliative care to discuss challenges in this emerging field

October 15, 2011
When children are facing a life-threatening illness, bringing in palliative medicine specialists can help both the child and family improve the child's quality of life, for however long he or she lives.

Child care subsidies boost quality of care for some but not all

June 14, 2012
The federally funded child care subsidy program is among the government's biggest investments in the early care and education of low-income children. A new study has found that subsidies have the potential to enhance the ...

High-quality child care found good for children -- and their mothers

February 8, 2012
High-quality early child care isn't important just for children, but for their mothers, too. That's the conclusion of a new study by researchers at the University of Texas at Austin; the study appears in the journal Child ...

Recommended for you

Americans misinformed about smoking

August 22, 2017
After voluminous research studies, numerous lawsuits and millions of deaths linked to cigarettes, it might seem likely that Americans now properly understand the risks of smoking.

Women who sexually abuse children are just as harmful to their victims as male abusers

August 21, 2017
"That she might seduce a helpless child into sexplay is unthinkable, and even if she did so, what harm can be done without a penis?"

To reduce postoperative pain, consider sleep—and caffeine

August 18, 2017
Sleep is essential for good mental and physical health, and chronic insufficient sleep increases the risk for several chronic health problems.

Despite benefits, half of parents against later school start times

August 18, 2017
Leading pediatrics and sleep associations agree: Teens shouldn't start school so early.

Doctors exploring how to prescribe income security

August 18, 2017
Physicians at St. Michael's Hospital are studying how full-time income support workers hired by health-care clinics can help vulnerable patients or those living in poverty improve their finances and their health.

In a nutshell: Walnuts activate brain region involved in appetite control

August 17, 2017
Packed with nutrients linked to better health, walnuts are also thought to discourage overeating by promoting feelings of fullness. Now, in a new brain imaging study, researchers at Beth Israel Deaconess Medical Center (BIDMC) ...

0 comments

Please sign in to add a comment. Registration is free, and takes less than a minute. Read more

Click here to reset your password.
Sign in to get notified via email when new comments are made.