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.

Keywords:

• “difficult” patient
• sickle cell disease
• ethics committees
• professional–patient relationship
• trust
• race
• uncertainty
• culture
• medical politics
• psychology

Acknowledgments

The authors acknowledge the research contribution of summer interns in the Department of Medical Ethics and Health Policy, Perelman School of Medicine at the University of Pennsylvania: Kathryn Murphy, Sarah Rubin, and Prya Murad.