Making a choice to transition to hospice is a big step for any family, but especially so for families with children who have life-threatening illnesses. It can be hard to imagine a child at the beginning of their life as being appropriate for hospice care. However, kids need hospice too. For some children, their complex medical diagnoses or chronic illness are such that cure focused treatments are no longer successful. When this happens, children deserve supportive care so they do not have to remain hospitalized. Currently, in the Omaha area there are minimal options for pediatric families. Because of this, Endless Journey has started a pediatric hospice program to support the youngest patients in our community. When working with pediatric hospice patients, there is a need to provide support for multiple family members at once. The team provides direct medical care in the home for the patient, emotional support for the caregivers, and developmentally appropriate care for any siblings. This compassionate, family-centered care includes connecting families with community organizations to help provide meaningful experiences and facilitate memory making. At Endless Journey, the team knows that time is a resource we cannot create more of so we aim to make the most of each moment. Pediatric hospice is unique in that families can receive hospice care while also still engaging in curative treatments; this is called concurrent care. Under the affordable care act (sec. 2302) in the state of Nebraska, children aged 19 years and younger are eligible to receive this concurrent care. Because of this, Endless Journey has fostered partnerships with the pediatric hospital systems in the area to ensure that our in-home hospice support is well coordinated with the in-clinic plans of the primary medical teams. Making the choice for hospice has historically had a connotation of giving up, but in practice, hospice is looking towards living well with the focus of what is most important to the family. Editors Note: This article was submitted by Katie Ransdell, MS, CCLS, Bereavement Coordinator & Certified Child Life Specialist with Endless Journey Hospice where she can be reached at 402-800-8145
