“It Can’t Be the Dialysis that Kills the Child…” Partnering Pediatric Palliative Care with Care for Children with End-Stage Renal Disease (TH366)

Abstract

•Explain key issues in end-stage renal disease in the pediatric population.•Summarize dialysis care, including the various forms, eligible populations, contraindications, and complications.•Identify opportunities and challenges for palliative care and hospice collaboration in the care of pediatric patients with end-stage renal disease. As chronic kidney disease progresses to end-stage renal disease (ESRD), important discussions regarding when and if to initiate dialysis occur. ESRD affects more than 660,000 Americans, less than 10,000 (1.5%) of those are pediatric patients whose time on dialysis is typically meant as a bridge to transplant. In rare circumstances, comorbidities, such as multiorgan failure, progression of other life-threating medical conditions, congenital anomalies, and size restrictions limit pediatric candidates’ access to transplant. In addition, dialysis-related infections and thrombosis can limit patients’ access to future transplant. Overall, this leads to a 5-year mortality for children with ESRD of 11%. Despite these mortality rates, very little has been published on pediatric palliative care (PPC) and hospice in ESRD. How can nephrology and PPC teams partner with each other, patients and caregivers to optimize care in pediatric ESRD? In this session, our multidisciplinary team will use recent cases, clinical literature, and Medicaid/Medicare regulations to inform attendees about shared challenges and solutions supporting patients with ESRD and their families. An overview of modes of renal replacement therapy, their limitations, and complications will be provided by pediatric nephrologists. Strategies to introduce the broad complement of PPC options and maintain open lines of communication between families and nephrology colleagues will be reviewed by PPC experts with experience caring for patients with ESRD. Finally, presenters will discuss challenges to implementing and maintaining palliative care principles, including those beyond end-of-life discussions, within the context of ESRD care. In this concurrent session, participants will have an opportunity to learn about ESRD care options and hear our centers’ experiences caring for these complex patients, highlighting the various roles of PPC, some challenges and ethical concerns we have encountered, and strategies to introduce palliative care within the pediatric ESRD population.