Changing Palliative Care for Medically Complex Patients

Summary

In a rural state with minimal access to pediatric care, children with medical complexity often have to travel hours for the specialty services offered at Children’s Nebraska. Many families voiced “feeling like they were on an island” without direct support from the hospital’s palliative care team. Similarly, local emergency medical communities felt apprehension about taking care of medically complex children.

Recognizing a significant gap between community emergency services and the care of medically complex children, the Hand in Hand Pediatric Palliative Care Team at Children’s Nebraska, and the organization’s Project Austin, collaborated to increase community emergency services awareness and education. The goal: to improve emergency care for this complex population. Through this partnership, the teams help children with serious illness, and their families, to establish and prioritize goals of medical care; assist with medical decision-making; alleviate pain and other symptoms to maximize quality of life; and provide support for physical, emotional, social, and spiritual needs. Together, the teams prevent and relieve distress, assist with communication, and promote quality of life throughout the illness trajectory while maintaining a patient- and family-centered view of medical care.