Abstract

In one of his most important books, Children, Ethics, and Modern Medicine, Richard B. Miller argues that medical ethicists have too frequently focused on abstract moral and legal principles in wrestling with the issues raised by contemporary medical practice. Drawing on the anthropologist, Clifford Geertz, Miller suggests that ethicists must attend to both the “experience-near” realities that patients and their families confront and the “experience-distant” work of connecting those realities to the theoretical principles that might help illuminate the existential and ethical problems faced by patients and families. In a useful analogy, Miller argues that the best strategy is to tack back and forth between the near and the distant such that one artfully occupies the intermediate space between personal and impersonal perspectives. In this chapter, I follow Miller’s advice to seek out the intermediate space between the lived reality of the bedside and the reflective domain of the scholar’s office. For most bioethicists that space is found in one of three ways. One encounters patients and their families as a clinician or as an observer of the clinical encounter. One attends carefully to illness narratives as a source of experience-near material. Or one reflects on one’s own experience as a patient or family member encountering medical practice. This chapter suggests that it is possible to combine these approaches. Specifically, I draw on the experience of accompanying my wife through her illness and death from ovarian cancer, as well as on grief memoirs to illuminate a neglected area of health humanities scholarship. Drawing on Arthur Frank’s classic study of illness narratives in The Wounded Storyteller, this chapter delineates similarities and between grief narratives and illness narratives. A comparison of these two genres suggests why the grief of patients and families is so often overlooked in accounts of the clinical encounter.