Partners in Hospice Care: A Program Project Grant Exploring and Supporting Family Caregivers During Hospice Care Through Bereavement (SA505)

Abstract

experience caring for children and their families. Barriers to quality pediatric hospice include a lack of pediatric-trained staff, consultation support from pediatricians, pediatric pharmacy support, and communication between providers. Regulatory and funding issues also play a part as states struggle to understand and apply concurrent care for children who desire diseasedirected therapy during hospice care. Some children’s hospitals have developed hospital-based palliative care teams that focus on the transition from inpatient palliative care to hospice. These services make hospice referrals, provide detailed care plans to hospice, and offer pediatric specific training for hospice nurses. Often, they provide 24/7 telephone coverage for patient management and serve as the primary attending if desired by the primary physician and the hospice director. Another model is Massachusetts’s Pediatric Palliative Care Network, in which a centralized state agency oversees the provision of hospice services from numerous local agencies. Hospital-based palliative care teams are often integral in the ongoing care of these patients. Participants will have the opportunity to reflect on their own successes and challenges in providing hospice care to children. Together, we will brainstorm solutions specific to identified barriers. Examples will be offered to help palliative care providers communicate with and educate primary care providers, subspecialists, and hospice clinicians. In small groups, we will design feasible networks of pediatric and adult providers in our communities, highlighting the formation of strong relationships as a next step in improving pediatric hospice care.