Subjectivity, Experience and Evidence: Death Like Milk on the Doorstep

Abstract

Evidence-based medicine has been criticised as failing to include values and priorities as part of the evidence that determines treatment. Narrative-based approaches have developed to meet this lack and represent the subjective aspects of the experience of illness and treatment. But to inform medicine, patients’ narratives should be reliable, stable and documentary such that contradictory, fantastic, metaphorical elements of experience are still excluded as legitimate evidence. This essay suggests that story offers a version of patient experience that encompasses wider aspects of the subjectivity of illness, suffering and loss. As the unreliable cousin of narrative, story’s virtue is that it is harder to assimilate to the epistemological demands of biomedicine. Two unreliable stories representing experiences of pain, suffering, care and loss are presented. First, Jenny Diski’s story of her double diagnosis with pulmonary cancer and fibrosis demonstrates ambivalent experiences that cannot easily be reduced to a stable, documentary narrative, relying as they do on memory and metaphor. Second, documentary narrative’s limits to represent experience become apparent at the point where biomedicine’s therapeutic methods fail and death comes into view. Sara Ryan’s account of her son’s death while in a ‘care’ unit illustrates how the truth of some experience may only be represented through imagined interactions that could never actually occur.