HES: Jenny Slatman (project-leader), Gili Yaron, Marjolein de Boer, Klasien Horstman, Eddy Houwaart, (and Guy Widdershoven, VUMC Amsterdam).
Funder: Netherlands Organization for Scientific Research (NWO).
Bodies that are blemished, by accidents, diseases or treatments, may have lost their biological and/or functional intactness. Nevertheless they may be experienced and considered as “whole”. This project seeks to explore the experience of bodily wholeness in people with disfiguring breast, head and neck cancer. It will argue that the way in which people experience their own body serves as the basis for making (treatment related) choices, and thus entails a normative meaning. To this purpose, it starts from the hypothesis that bodily integrity should be explained in terms of the capacity of identifying with one’s body, i.e. the capacity of being the body one has. Physical restoration of someone’s blemished body does not necessarily result in the restoration of this person’s experience of bodily integrity, e.g. a breast reconstruction restores physical intactness, but identification with the new breast cannot be taken for granted. This project seeks to enrich the current discourse and practice of medical ethics by bringing forth that decision’s about physical interventions should not be based upon cognitive deliberations only. The process of decision making should also include an articulation and evaluation of the way a patient relates to her/his body. It is exactly this project’s aim to provide insights in how cancer patients and survivors express their experience of (loss of) bodily wholeness. Such an empirically sound vocabulary of body experiences can subsequently be used by medical professionals to support patients in making good decisions.