By Lisa C. Lindley, PhD, RN, FPCN, FAAN and Alexis Morvant, MD, MA, FAAP –

Pediatric e-Journal
Pediatric Palliative and Hospice Care
Issue #60; August 2020

Continuing reading in the NHPCO Pediatric e-Journal at https://www.nhpco.org/wp-content/uploads/Issue-60-full-draft-final-v3.pdf

The landmark pediatric end-of-life legislation known as Concurrent Care for Children (CCC) authorizes state Medicaid Offices to provide children, who are less than 21 years old and living with a six-month prognosis, with hospice care and subspecialty care (1). This benefit ensures that parents are never forced to decide to stop life-prolonging therapies in order to receive quality care at home from an interdisciplinary hospice team focused on comfort. Prior to CCC, hospice care and subspecialty care lived in relative peace and harmony. Once the intensive interventions being offered by the subspecialist could no longer achieve the child’s and family’s goals, there was a break in the service and payment structure to the subspecialist. The hospice then would become the new provider.

Today these worlds collide and hospices along with subspecialists are treading in uncharted and undocumented territory. They are no longer mutually exclusive. A simple concurrent care case example is a child, living with cancer and a six-month prognosis, who is entitled to continue chemotherapy once enrolled in hospice care. Child and family goals of care are now more complicated as comfort is combined with “services for the terminal illness” (1). A typical CCC care plan is complex and must factor in uncertain disease trajectories given rarity of some illnesses and limited studies, complex chronic conditions requiring many subspecialists to assist in management, difficulty delineating differences between comfort and life-prolonging entities of the care plan, and complications from medications and treatments.