J Med Ethics. 2013 Nov 12. doi: 10.1136/medethics-2011-100063. [Epub ahead of print]

Care ethics for guiding the process of multiple sclerosis diagnosis.

Krahn TM.

Abstract

Multiple sclerosis (MS) is a chronic neurological disorder for which there is no definitive diagnostic test. Uncertainty characterises most of its features with diagnosis reached through a process of elimination. Coping with uncertainty has been recognised as a significant problem for MS patients. Discussions in the literature concerning the ethics of MS diagnosis have focused on an ethics of duty emphasising the rules for disclosure and healthcare professionals' obligations to provide information to patients. This narrow construal of the ethics at stake with MS diagnosis may be driven by a common misperception that diagnosis is an event, or series of events, rather than a process. Scant attention has been given to the dynamic, situated relational space between patient and physician as they journey potentially together (or apart) through the process of diagnosis. The healthcare provider cannot properly judge 'the how, what and when' of MS disclosure merely by applying rules pertaining to general professional duties to tell the truth and patients' rights to know their medical status. Proper disclosure and effective communication require the practice of flexible, caring responsibility and sustained, ongoing attention to the particular relational needs of 'this' patient in her own situational context. Accordingly, this article argues that care ethics is especially useful (but not without certain limitations) for attending to a broader swath of responsibilities (different from minimal duties) and affective components implicated in meeting patients' overall needs for care as the patient and physician cope with uncertainty through the process of establishing an MS diagnosis.