title: Palliative Care Teams as Advocates for Adults with Sickle Cell Disease.
abstract: Medical advances have improved the overall life expectancy of patients with sickle cell disease (SCD). Unfortunately, the quality of life for patients with SCD remains a struggle. As the goal of palliative care (PC) is to improve quality of life for patients with serious illnesses, many PC teams are now asked to be involved in the care of these patients and may have variable levels of experience with SCD. Caring for patients with SCD is a complex and difficult task that often causes a reflexive "groan" from health care providers, which usually signifies a negative health care provider attitude stemmed from feeling uncomfortable in treating this complex patient population. It is important to be aware of these implicit biases and to overcome these feelings by becoming more familiar with the lives and experiences of those with SCD. This report provides an overview of SCD, context for the complexity of caring for this patient population, and areas for partnering in care.
authors: 1 Department of Pediatrics, Rady Children's Hospital , San Diego, California.|2 Scripps Translational Science Institute , La Jolla, California.
authors: Toluwalase A
authors: TA
authors: Ajayi
authors: 3 Doris A. Howell Palliative Care Service, University of California San Diego , La Jolla, California.
authors: Kyle P
authors: KP
authors: Edmonds
authors: 3 Doris A. Howell Palliative Care Service, University of California San Diego , La Jolla, California.
authors: Kathryn
authors: K
authors: Thornberry
authors: 3 Doris A. Howell Palliative Care Service, University of California San Diego , La Jolla, California.|4 Skaggs School of Pharmacy and Pharmaceutical Sciences, University of California San Diego , La Jolla, California.
authors: Rabia A
authors: RA
authors: Atayee
mesh_terms: D000293:Adolescent; D000328:Adult; D000755:Anemia, Sickle Cell; D019538:Health Care Surveys; D006282:Health Personnel / Q000523:psychology*; D006801:Humans; D010166:Palliative Care; D010344:Patient Advocacy; D010348:Patient Care Team; D011788:Quality of Life; D012720:Severity of Illness Index; D055815:Young Adult