LeadingAge New York Adviser Winter Vol. 1 | Page 42

Concurrent Care for
Children

When a child is diagnosed with a life-limiting illness, it upends many of our core
beliefs. Children are not supposed to die. Yet each year, approximately 53,000
American children and infants die, 20,000 of them from congenital and chronic
conditions, including cancer. Providing care for this vulnerable population is a
challenging endeavor.
Children with life-limiting illnesses suffer from a wide range of conditions and
it is difficult to accurately predict the way a disease will progress in a child. This
uncertainty hampers the providers’ ability to accurately predict the child’s response
to treatment or overall chances for the child’s survival. It also affects decisions
that parents or medical professionals may make concerning the child’s treatment
options. This uncertainty may confuse the goals of care, resulting in “cure versus
care” thinking, rather than encouraging the two types of therapies to be provided
simultaneously. Uncertainty about disease progression encourages parents to
pursue curative treatments until the medical staff members are “sure” of the child’s
imminent demise, and children are referred to palliative care only when curative
treatments are exhausted. However, experts advise that children can benefit from
palliative care early in their courses of illness.
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Adviser a publication of LeadingAge New York | Winter 2015