Chapitre 4. Évaluation éthique des téléconsultations de suivi des patients atteints de sclérose latérale amyotrophique en phase avancée

The COVID epidemic has changed the way monitoring and management of patients with amyotrophic lateral sclerosis (ALS) is organized. Teleconsultations (TLC) have become essential to maintain medical surveillance. The practice of TLC required adapting the computer system to the patients’ disability and the intervention of a TLC assistant professional with the ALS patient. When the confinement was lifted, many patients asked to maintain this monitoring modality. Nevertheless, the experience raised several ethical questions. This article raises four sets of questions based on the analysis of a clinical case. These questions concern the relevance of TLC in the ALS patient’s care pathway and the quality of information provided to the patient about it, the respect of patients’ rights during TLC, the quality of the caregiver-patient relationship and finally the impact of TLC on the healthcare system.