Maladie d'Alzheimer ou la quête de l'autonomie en contexte de fragilité. Le point de vue du neurologue

Cancer and Alzheimer's disease have become two major concerns in the field of public health. Whereas cancer introduces the risk of a life-threatening prognosis, Alzheimer's disease compromises the relationship between subjects and those around them, as impairment of the memory “deconstructs” their trajectory of identity. Care is no longer based on the principle of the patient's well being, which has now taken on the suspect nuance of paternalism. The focus of care is now based on the principle of autonomy, which is how the French law passed in 2002 describes the rights of the patient. These rights, therefore, implicitly spell out the duties of the physician who must, in the name of autonomy, obtain a free and informed consent from the patient regarding the proposed treatment. Alzheimer's disease, however, with its symptoms of memory impairment, language difficulties, executive disorders, and behavioral problems, alters the patient's capacity to demonstrate autonomy. The law only considers two states of being: one in which patients are capable of making choices and another where they cannot. There can be a resulting tendency to replace the patient's freedom of choice by the choices made by the “trusted person”. From an ethical point of view, however, autonomy cannot be considered from the point of view of all-or-nothing. Even an autonomy damaged by illness should not prevent those concerned from always seeking the participation of the patients in the decision processes that concern them. Respecting one's autonomy is not so much a patient's right as it is a duty of the career. This defines this code of ethics that is both a code of fragility, due to the attention required by a disappearing autonomy, as well as an ethic of comprehension and finally, a performative ethic as it attempts to carry out the very practice that it discusses.