title: Use of the Word "Crisis" in Sickle Cell Disease: The Language of Sickle Cell.
abstract: Language matters. The words used to name and describe disease phenomena are a reflection of society. The authors address the use of the word "crisis" in SCD from sociological, historical, medical, and patient perspectives. The term "crisis" became associated with sickle cell disease in the mid-1920s, more than a decade after the first description of the disease had been published. The term had been used for centuries in conjunction with fever and as a signifier of severe pain in certain diseases during the nineteenth century. The application of the term to this new disease in the 1920s resulted from physicians' observations of their patients' urgent situations. Though commonly used by health care providers and patients today, "crisis" may not be the appropriate term for sickle cell patients suffering severe pain, because people endure differing amounts of pain before stating they are "in crisis." The result can be undertreatment of the pain or mistrust between physicians and patients about use of strong (narcotic) pain-relievers. Some patients believe the term is useful in communicating the severity of their pain and the urgency of their need for relief from it, especially when seeking care at hospital emergency departments, while others believe "crisis" does not accurately reflect the severity or seriousness of their situation.
authors.affiliation: Department of Bioethics and Interdisciplinary Studies, The Brody School of Medicine at East Carolina University, Greenville, NC, (Historical Perspective). Electronic address: savittT@ecu.edu.
authors.forename: Todd L
authors.initials: TL
authors.lastname: Savitt
authors.affiliation: Department of Medicine, Virginia Commonwealth University, Richmond, Virginia, (Clinician and Researcher Perspective).
authors.forename: Wally R
authors.initials: WR
authors.lastname: Smith
authors.affiliation: The Johns Hopkins Berman Institute of Bioethics, Baltimore, MD (Patient Perspective).
authors.forename: Carlton
authors.initials: C
authors.lastname: Haywood
authors.affiliation: Division of Blood Disorders, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA (Introduction).
authors.forename: Melissa S
authors.initials: MS
authors.lastname: Creary
keywords: crisis; history; pain; sickle cell disease