8 - The patient writes back

Summary

About 1960, let us say, bioethics began to emerge as a specific intellectual practice; and from about the same time narratives by patients began to be published in increasing numbers. The argument of this chapter is that these narratives of illness, in which I include the writings of both patients and care-givers, expose some weaknesses of the discipline of bioethics as now usually understood; and furthermore that this genre of writing is a stronger domain of ethical thinking about medical experience than its officially sanctioned twin. The emergence of bioethics is commonly dated to the invention of the kidney dialysis machine, the problems of deciding access to this expensive technology that ensued, and the era of ‘biomedicine’ it initiated. The illness narrative, sometimes called the ‘pathography’, a more or less contemporaneous development – though examples before this era can certainly be found – results, I suggest, out of the same challenges. In both pathography and bioethics, argument and narrative intertwine, each dependent on the other.

For unlike traditional medical ethics, bioethics relies extensively upon storytelling. The typical biomedical handbook will display an array of case histories, different from the cases in the texts of earlier mainstream medicine in that they have a clearly definable plot and confict, and even ‘characters’, the patient and his or her family. The social status and religious belief of the protagonist may perhaps be indicated, the family constellation sketched; the doctor might be presented, the anxieties of his conscience briefy touched in. Almost certainly, the case will centre around a crisis of treatment and will pose a dilemma.