BEYOND THE AUTONOMY PRINCIPLE. BIOETHICS WITH ALS AND MS CAREGIVERS

Abstract

My paper draws on the action-research project “Bioethics with the Caregivers” which I participated in as member of the Applied Ethics and Bioethics Team of the Urbino University. The project focused on the caring experiences of spouses, parents and siblings whose dear ones suffered from non-demential neurodegenerative diseases. It was led with and by caregivers rather than on or for them, and brought to light philosophy's irreplaceable role as a critical and dialogic toolbox in dealing with unexplored and/or unaddressed needs. This paper shows how a philosophical approach to caregiving in neurodegenerative diseases puts the more general dynamics of interdependence under a magnifying glass for questioning the priority of the autonomy principle and revaluing outmoded frames of mind and assumptions. The hope is that a more informed and open-minded approach to out-of-the-ordinary conditions can contribute towards a breaking down of the fears which prevent an appreciation of the richness of difference.