title: Sickle cell disease and the "difficult patient" conundrum.
abstract: The convergence of sickle cell disease's unique political, historical, cultural, medical, and psychological dimensions begets an especially distressing plight for sufferers of the disease. Too often, this convergence results in sickle cell patients being classified as "difficult." As Autumn Fiester recently argued, traditional understanding of the "difficult" patient warrants reevaluation. By acknowledging the nuanced dimensions of sickle cell disease, we identify barriers to care particular to the disease, which further substantiate the need to redefine orthodox notions of the "difficult" patient. We support development of mechanisms in both health care provider education and third-party consultation support by the Ethics Consultation Service, or by other appropriately designated specialists, to respect the manifold dimensions of sickle cell disease as a necessary step toward the enhancement of clinical care for sickle cell patients.
authors.affiliation: Department of Medical Ethics and Health Policy, Perelman School of Medicine, University of Pennsylvania, 3401 Market Street, Suite 320, Philadelphia, PA 19104-3308, USA. ejb@gear3.net
authors.forename: Edward J
authors.initials: EJ
authors.lastname: Bergman
authors.forename: Nicholas J
authors.initials: NJ
authors.lastname: Diamond
mesh_terms: D001741:Black or African American / Q000706:statistics & numerical data; D000755:Anemia, Sickle Cell / Q000453:epidemiology / Q000523:psychology; D003466:Cultural Characteristics; D034462:Dissent and Disputes; D033061:Ethics Consultation; D006801:Humans; D010361:Patients / Q000523:psychology*; D012307:Risk Factors; D035502:Trust; D035501:Uncertainty; D014481:United States / Q000453:epidemiology