Weaving palliative care into the tapestry of pediatrics

Since the 2003 Institute of Medicine report When Children Die proclaimed that early integration of palliative care would benefit children through the trajectory of an illness, disease, or condition, children's hospitals have strived to create pediatric palliative care programs. An innovative model will describe a highly successful pediatric palliative care program established initially with nursing staff at relatively low cost. Recognizing that many of the principles of palliative care are inherent in established health care roles, the goal was to formally incorporate these concepts into direct caregivers' practice. It will be shown that this "role enhancement" can be very beneficial, especially for beginning programs. Through education and practice opportunities, palliative care principles can be infiltrated to the bedside with improved acceptance. Begun with philanthropic funds and completely operationally funded after 5 years, the number of patients and families soared, overutilization of invasive interventions plummeted, visits to the emergency department and hospital admissions decreased, and staff/family satisfaction rose. Palliative care woven into the skill set of health care professionals enhances care delivery across the continuum for children with life-threatening and/or complex chronic conditions with the goal to live optimally while combating the rigors of illness so they may recover, live better longer, or die gently.