Palliative care for seriously ill children also helps their families
When a child undergoes medical care for a life-limiting condition ― such as cancer or certain neurological or cardiac conditions ― receiving in-home palliative care at the same time improves the quality of life for both the child and the family by reducing worry and stress, according to an article by researchers from the UCLA Center for Health Policy Research published in the Journal of Hospice & Palliative Nursing.
In 2010, the Affordable Care Act (ACA) cemented the right of severely ill children to undergo concurrent curative care and palliative care, known as "comfort" care, in the last six months of life, the study reports. Prior to the ACA, parents of severely sick children had to forgo the first to qualify for the latter.
The UCLA researchers followed a three-year California Department of Health Care Services pilot program for qualifying Medi-Cal children in nine California counties called Partners for Children (PFC). The program gave palliative care to children ages one to 20 for much longer than the "last six months of life" limit under the federal law and regardless of life expectancy.
Palliative care included home-based services such as pain and symptom management for the child and art/music therapies to help him or her cope with illness, family education on how to operate medical equipment or navigate the health care system, 24-hour access to on-call hospice or a health agency nurse, respite care, and counseling and bereavement services, according to the article.
Reduction of caregiver stress and worry
Based on surveys of PFC participants' parents taken before and during the program, authors of the article found that palliative care reduced family stress and worry. They also found that family support (from spouses, grandparents, friends, etc.) further helped decrease caregivers' stress and worry. Earlier studies showed palliative care also lowered costs, according to the article.
"The PFC program is a promising tool that can enhance care for children with life-limiting illnesses and alleviate some caregiver stress and worry," said Daphna Gans, a Center faculty associate and lead author of the study. "It also saves money by reducing the number of days a child spends in the hospital ― a win-win situation."
The authors also found that the family-centered palliative program is effective for children in less severe stages of the disease and families would benefit by early referrals to reduce stress before the disease reached an advanced stage.
"Child palliative care is a program worth growing but should not be limited to the most severely sick children," Gans said. "Early access to palliative treatment showed that despite their child's deteriorating health, caregivers reported feeling less stress as the disease progressed rather than greater stress ― that is a measure of success."
The PFC program ran from January 2010 to December 2012 and was extended for five more years to 2017.
Read the study: Impact of a Pediatric Palliative Care Program on the Caregiver Experience
About the UCLA Center for Health Policy Research
The UCLA Center for Health Policy Research (CHPR) is one of the nation’s leading health policy research centers and the premier source of health policy information for California. UCLA CHPR improves the public’s health through high quality, objective, and evidence-based research and data that informs effective policymaking. UCLA CHPR is the home of the California Health Interview Survey (CHIS) and is part of the UCLA Fielding School of Public Health. For more information, visit healthpolicy.ucla.edu.
