Paper short abstract:

This paper aims to shed light on patients’ use of knowledge to manage uncertainties, and on medical staff’s usage of information to foster patients’ self-management. It will critically reflect on the triad of (un)certainty, information, and self-responsibility in the case of chronic liver diseases.

Paper long abstract:

Uncertainty is an inescapable part of social life; it is central to human existence and inseparable from matters of life and death. This becomes especially obvious in the case of life-threatening, chronic diseases. Focusing on the waiting time for a new liver in the context of the German transplant system, I want to shed light on the manifold sites and usages of information in a clinical context. I aim to show how people use information to make sense of an uncertainty that literally puts them at a place between life and death, and how medical staff employs information to foster patients' self-responsibility and self-management.

I want to discuss the concept of the informed patient and the triad of (un)certainty, information and self-responsibility in the context of chronic liver diseases. There are two diametrical existential stances prevalent in the life of people on the waiting list: the hope for a new liver, and the possibility of one's upcoming death. This tension entails a complex array of emotions induced through the unpredictability of the process and the uncertainties attached to the future. In this paper I attempt to shed light on patients' appropriation of knowledge to manage the existential and temporal uncertainties at hand, and on medical staff's usage of information to foster patients' self-management and self-responsibility.