Normalities are not the Only Answer for Amyotrophic Lateral Sclerosis Patients

Abstract

Because our actions change, our responsibility is modified; because our responsibility is modified, we need to question the ethics of the action. Our action is situated right there between announcing a diagnosis, the theoretical and practical result of identification, the determining and naming of a fact and voicing the disease which is a human action where medical and technical expertise comes up against a life and its story. Amyotrophic Lateral Sclerosis (ALS), or Lou Gehrig’s disease, is a degenerative disease of the motor neurons leading to paralysis. In the absence of any curative treatment, the natural course always results in death. Since 1989, progress in the management of this disease in France has been exponential, resulting in the creation of 17 expert centres throughout the country in 2003. Guidelines have been drawn up through consensus conferences and coordination meetings. For the delicate stage of the announcement, three requirements have been adopted: the quality of receptiveness of the medical practitioner and his team, their ability to listen and to adapt to the particularities of the patient in their care; their commitment with regard to legal obligations as to how and to whom to transmit information; and the need for a multidisciplined approach to be able to rapidly support the patient and his family. Questioning in the field of applied ethics has led us to examine whether having a benevolent and non-harmful attitude towards these patients, respecting their autonomy and legal rights are parameters required in this specialized practice. Through a transversal thematic analysis of the experiences of the medical practitioners at the Centres, we would like to explore a hypothesis of the remarkable epistemological progression of the neurologist in this form of care in the pure Hippocratic tradition. Through the compassionate experience of the other by these committed doctors and their teams, we will try to outline the view of anthropological phenomenology with regard to the ALS patient, their awareness of the future paralysis of the body that is being announced, their awareness of the temporality and will characteristic of the ALS patient and of his finality that they will be accompanying.