Enjeux éthiques de la relation soignant-soigné dans le cas de maladies rares : pistes d'amélioration possibles

Details

Supervisors

Dupuis, Michel

Faculty

Faculté de philosophie, arts et lettres

Degree label

Master [120] en éthique

Abstract

enIs there a particular aspect to the caregiver-patient relationship in the case of rare diseases? Or instead, might rare diseases offer us a whole new dimension in the caregiver-patient relationship? This thesis offers an affirmative answer to both of these questions. The chronicity, irreversibility, statistical invisibility and non-medical designation of rare diseases as well as the inability to cure them, all confer a very particular aspect to their caregiver-patient relationship, demonstrating the limits of today’s medicine in its progress towards a personalisation of pathologies. The following pages bear witness to this anomaly through an analysis of over four hundred living testimonies from patients for whom a broad range of strategies attempt to address this can of worms full of question marks. It remains to be seen whether the traditional caregiver-patient relationship is capable of absorbing this kind of pathology into the wealth of medical knowledge or if instead, rare diseases provide an opportunity for caregivers to move beyond the traditional boundaries of medicine. The stakes are huge: ethical, epistemological and existential all at once. It’s a matter of choice.