Children living with life-limiting or life-threatening conditions and their families need the expertise that hospice and palliative care professionals can provide throughout the course of a serious illness.
A pediatric-focused report, Pediatric Concurrent Care Briefing, has been released by the Mary J. Labyak Institute for Innovation, a program of the National Hospice and Palliative Care Organization based at the National Center for Care at the End of Life.
It’s important to remember that the care provided to a child with serious illness is different from the care that we would give to an adult,” said J. Donald Schumacher, NHPCO president and CEO. NHPCO is the organization that created the Mary J. Labyak Institute for Innovation in 2012.
Children aged 0-19 years accounted for 1.9 percent of all deaths in 2009. Slightly more than half of childhood deaths occur in infancy.
“While the numbers of children that die from each year from a serious illness in the U.S. are low, we have a responsibility to compassionately care for each of these children and their families,” Schumacher added.
Effective management of pain and symptoms together with psychosocial and spiritual care that are sensitive to developmental, personal, cultural and religious values and practices are critically important. The need for such care begins at diagnosis and continues throughout the entire course of a child’s life and for their families beyond the child’s death.
For many years, children facing such illnesses had few options for Medicaid coverage when children were very seriously ill. Parents in all but a few states were faced with forgoing curative treatments for their children to be eligible for hospices services – considered to be the gold standard for end-of-life care. The patient Protection and Affordable Care Act (ACA) changed that situation.
Under the ACA all state Medicaid programs are required to pay for both curative and hospice services for children under age 21 who qualify. This is covered by a provision, Section 2302, termed the “Concurrent Care for Children” requirement.
The Pediatric Concurrent Care Briefing shares examples from states that have implemented options to provide pediatric palliative and hospice care services and outlines eight implementation strategies that can help ensure that providers are serving the children and families in the community that may be in need of the unique services hospice and palliative care brings.
The goal of the briefing is to foster the necessary collaboration among providers and advocates within each state to ensure that the most medically fragile children and their families have the quality care they deserve and desperately need.
NHPCO encourages the formation of statewide pediatric palliative and hospice care advocacy coalitions to work towards improved options of care.
This new report joins other materials created by NHPCO such as the Concurrent Care for Children Requirement: Implementation Toolkit and a series of seven online learning modules on Pediatric Palliative Hospice Care that will soon expand to a series of 10 modules.
Download the Pediatric Concurrent Care Briefing (PDF) free of charge from the NHPCO website and learn more about available resources for pediatric palliative care at www.nhpco.org/pediatrics.