P0557 - Pediatric Palliative Care: Practice Variation and Recommendations

Background: Palliative care provides holistic supportive care for people with complex life-limiting disease including symptom relief, navigation of complex medical decisions and support for their unique psychological, social, and spiritual needs to enhance their quality of life. Children are distinct from adults in many ways including their diagnoses, disease trajectories, symptom burden, and spectrum of caregivers. As medical technologies improve, the number of children who are appropriate for pediatric palliative care (PPC) expertise is increasing. This project sought to characterize the availability of PPC in California and elucidate the barriers to expanding access for families.

Methods: A review of the literature regarding PPC program models, established clinical guidelines, and expected outcomes was conducted to form the basis of a comprehensive survey cataloguing current PPC practice patterns in California. This survey was sent to 17 children’s hospitals and tertiary medical centers in California requesting details about the structure of their PPC service, typical patient census, organizational and financial support, utilized benefits, and plans for expansion.

Results: Literature recommendations highlight a multidisciplinary PPC team composed of a specifically trained physician, nurse practitioner, child life specialist and medical social worker who together provide support with goals of care and medical decision making, specialized symptom management and care of the family throughout the child’s journey with illness including bereavement. 12 out of 17 institutions responded to our survey revealing a variety of practice patterns and challenges of expansion. Only a few programs are able to provide a full range of services. Most have only one to two providers and do not have a dedicated social worker or child life specialist. Every program acknowledged the importance of their team, established funding and solid organizational leadership support.

Conclusion: Pediatric Palliative Care (PPC) makes a substantial difference in a patient’s personalized care experience, quality of life, clarity of care choices, and caregiver support and wellness. PPC also has a positive impact on the number of emergency room visits, days in the hospital, and procedures done for children near the end of life. Currently there is a gap between what is available and what the American Academy of Pediatrics recommends, namely that every hospital that cares for complex and chronically ill children provide comprehensive Pediatric Palliative Care. By enhancing existing programs and establishing new ones, PPC services could provide care to more medically complex children, expand care across the continuum and community, and pursue ongoing research and quality improvement.