Nurs Clin North Am. 2010 Sep;45(3):375-97. doi: 10.1016/j.cnur.2010.03.003.

Sickle cell disease: an opportunity for palliative care across the life span.

Wilkie DJ, Johnson B, Mack AK, Labotka R, Molokie RE.

Source

Department of Biobehavioral Health Science (MC 802), Center for End-of-Life Transition Research, University of Illinois at Chicago, 845 South Damen Avenue, Room 660, Chicago, IL 60612-7350, USA. diwilkie@uic.edu

Abstract

Sickle cell disease is a chronic illness that affects patients physically and emotionally and can do so at an early age. An ecological model of palliative care that involves improved communication among the health care team, patients, and their families can be beneficial. Open and honest communication regarding advance care planning, disease management, relief of pain and other symptoms, and bereavement and grief are all important for the patient, family, and health care team. Given the multiple acute and chronic complications of sickle cell disease, an approach to care that is holistic and comprehensive may help to improve a patient's biologic function and the perceived health, functional status, and quality of life of the patient and family.