Affordable Care Act Provision
Expands Access to Pediatric Palliative Hospice Care
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.
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