Carla Marie Schnieder¹, Luis von der Stein¹, Matthias Havemann¹, Sophie Hecht¹, Dennis Wilke¹, Carola Seifart¹

¹ Institute for Applied and Clinical Ethics in Healthcare, Philipps University of Marburg

Advance Care Planning (ACP) is increasingly replacing traditional living wills with dialogue-based advance healthcare planning. However, the content of ACP documents has so far been little studied. In our presentation, we present the results of a qualitative study of 166 records of ACP discussions between patients and discussion facilitators, which was carried out as part of the ONCOnnect joint project funded by German Cancer Aid. We analysed the data using qualitative content analysis according to Mayring (2015), with adaptations based on Hsieh (2005) and Corbin (2014). Following inductive coding and the application of the constant comparison method, initial concepts were tested through quantitative analyses. The iterative theory-building process resulted in two expert-validated models that contribute to a more comprehensive understanding of individual decision-making in the ACP process.

In ACP discussions, patients do not primarily express their wishes by rejecting or consenting to medical interventions, but rather by articulating life concepts, through which individual notions of quality of life are compared with hypothetical scenarios. Three levels emerge: optimal, acceptable and unacceptable concepts of life, which determine value-based treatment preferences. The maintenance of self-determination and social relationships appear to be central decision-making factors in this context.

Previous experiences of illness have a key influence on decisions regarding one’s own end of life. In particular, the following factors play a role: who has the experience, how that experience is assessed, and how one adapts to it. Experiences lived through personally and those observed in one’s immediate circle each lead to different adaptive responses and varying treatment preferences. This is a cyclical process that can be repeated time and again.

Within the context of ACP, people face the overwhelming task of having to formulate and express their wishes for their future selves in relation to uncertain, medically complex situations. For the first time, our empirically grounded models provide an in-depth insight into how patients address this fundamental issue, and demonstrate that decision-making processes do not occur arbitrarily, but are based on conceptions of quality of life and biographical experiences.