Intractable difficulties in caring for people with Sickle Cell Disease

Abstract

Bergman and Diamond (2013) have articulately and accurately identified many of the reasons why, and the problems associated with, the identification of people with sickle cell disease (SCD) as “difficult patients.” In our view, however, by suggesting that this problem is best dealt with through an ethics service consultation (ESC), they misconstrue the source of the difficulties of SCD and fail to appreciate the limitations of bioethics in seeking to improve the health care experience of people living with SCD. We provide empirical data describing an Australian perspective of SCD care, which highlights not only the complex issues raised by this illness but the challenges it creates for medical decision making and for bioethics. We suggest that the difficulties of SCD are protean in nature and that more can be gained from thinking again about the limits of bioethics and contemporary medicine than it can by seeking solace in clinical ethics consultation.