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Pediatric Palliative Care Issues Gaining
Momentum |
The parents of terminally ill children face agonizing decisions when
they are forced to choose between curative and palliative treatments for
their children. These tough choices are necessary, says a recent editorial
in the Columbus Dispatch, because private insurance companies usually
follow guidelines established by the Medicare hospice benefit. The
Medicare hospice benefit will pay only for palliative, not curative, care.
When parents elect for a suffering child to receive hospice, families must
often choose to forego curative treatment unless the parents pay for such
treatment themselves. These children deserve, says the editorial, both the
best palliative care and access to curative treatments -- as long as there
is any hope for "defeating the disease." No parent should have to choose
between providing hope and providing hospice, the article asserts, and the
fact that this is not the common practice "is tragically wrong.
Two Ohio legislators agree and have joined forces to introduce the
"Compassionate Care for Children Act of 2003." The bill would assure that
children receive both palliative and curative care. The co-sponsors of the
Senate bill, Senator Mike DeWine (Ohio) and Senator Chris Dodd
(Connecticut), are supported by colleagues in the House, Representative
Deborah Pryce (Ohio) and Representative John Murtha (Pennsylvania). The
bill would eliminate the six-month rule for children to receive hospice
and would provide up to $35 million a year for five years to initiate a
range of grants to expand pediatric palliative care services and research
for seriously ill children and their families.
The legislation addresses recommendations from the Institute of Medicine's
2002 report, When Children Die: Improving Palliative and End-of-Life Care
for Children and Their Families. A review of this report is included in
the latest issue of NEJM. The report details the significant shortcomings
of the healthcare system in meeting the physical, emotional, and spiritual
needs of children and their families throughout the course of the child's
life-threatening illness. According to the article in NEJM, the report
specifically calls for public and private insurers to "restructure hospice
benefits, allowing hospice teams to care for children on the basis of
diagnosis rather than prognosis, even when a child is receiving
potentially curative or life-prolonging therapy." In addition, the article
states, "improving the care of dying children in this country could have a
substantially positive effect on the care of dying adults."
NEJM also reviews a new edition of a clinical textbook for pediatric
professionals, titled Pain in Infants, Children and Adolescents, written
by Neil L. Schechter, Charles B. Berde, and Myron Yaster. The book covers
theoretical perspectives, treatment strategies and specific problems of
children and pain and includes a strong multidisciplinary tack. Unlike the
first edition, this version includes a chapter on the issues surrounding
assessing and treating pain in children with developmental disabilities.
Reinforcing the importance of incorporating the psychological management
of pain, the book states, "Health professionals cannot choose to avoid
using psychology to treat pain. Our choice is whether to use psychology in
a conscious, constructive fashion or to leave the psychological aspect of
our intervention to chance." (Columbus Dispatch, 10/7; NEJM,
2003:349:1485-1486)
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