The Opportunities and Challenges of Establishing Palliative Care in Sickle Cell Disease: What's Our Role?

Outcomes 1. Identify the unique challenges and opportunities in defining the role of palliative care for patients with sickle cell disease.2. Describe novel models of palliative care practice for patients with sickle cell disease. Key Message Sickle cell disease (SCD) is a life-limiting illness with significant morbidity across the lifespan. To date, it has been rare for SCD patients to receive palliative care support. The factors driving this include appropriately defining palliative care practice in SCD care and lacking a robust evidence base. We will lead a moderated panel discussion exploring these opportunities and challenges. Abstract Sickle cell disease (SCD) is a congenital, life-limiting illness with significant morbidity across the lifespan, affecting 1 in 500 Black patients in the United States. Starting in childhood, patients with SCD experience high symptom burden with frequent pain crises and complications from multi-organ failure. SCD also causes early mortality, with an average life expectancy of approximately fifty years. For SCD patients, coping with these challenges is made increasingly difficult by systemic racism and inequitable care in our healthcare system. To date, it has been rare for patients with SCD to receive palliative care support. The factors driving this are complex, including concern over appropriately defining palliative care practice in SCD care and the lack of a robust evidence base to help guide these discussions.Using a panel of four interdisciplinary clinicians (three physicians and one social worker) from multiple specialties (hematology, palliative care), we will lead a moderated discussion highlighting the opportunities and challenges of integrating palliative care into SCD care models. We will start with a debate contrasting the enthusiasm for this care and the immense demonstrated need, with the concern for best defining our role. We will use case examples to discuss novel practice models from our own experiences, emphasizing lessons learned and exploring how we have defined palliative care practice and integration alongside the care of other subspecialties. We will discuss our experiences with developing care models without robust evidence guiding our practice and define the research priorities to help us advance care delivery in the future. Participants will be given the opportunity to have questions answered directly by the panelists. Keywords Diversity, Equity, Inclusion, Belonging, Justice / Models of Palliative Care Delivery