Top Ten Tips Palliative Care Clinicians Should Know About Sickle Cell Disease

Sickle cell disease (SCD) is a congenital, life-limiting illness that affects millions worldwide. It carries a high symptom burden and decreased quality of life. Although disease-modifying and even potentially curative therapies have recently emerged, significant tradeoffs and inequitable access remain. Opioids are the mainstay for acute pain but do not adequately address chronic pain syndromes that many people with SCD face. Additionally, individuals with SCD encounter emotional and psychosocial challenges, compounded by biases and structural racism within and outside the health care system. Despite improved life expectancy, prognostication is difficult as death can follow unpredictable and catastrophic complications; and older individuals develop other chronic illnesses associated with shortened survival, underscoring a role for advance care planning. Historically, palliative care (PC) involvement in SCD has been limited. This article, created by a multidisciplinary group of clinicians, offers an overview of SCD to better empower PC clinicians caring for individuals with SCD.