MILIEUX OF THE DYING: A COMPARATIVE ANALYSIS OF LIVING AND DYING WITH NEURODEGENERATIVE DISEASES IN FRANCE AND CALIFORNIA. – VITALMORTEL

VITALMORTEL seeks to put into comparative perspective emerging societal challenges of care for those living with neurodegenerative diseases, and of care for the dying. This will be achieved by ethnographically attending to the trials and tests of the last stages of life for a person affected by a cerebral disease, living in institutions whose task is to take care for them. Since the beginning of the 1990s, practices of care have been increasingly reworked around a “person centered approach”. “Person-centered” care particularly challenged previous assumptions held about the personhood of the sick individual, by attempting to address the subjectivity of demented patients, of the comatose and of those near death, so as to guard these persons from a “social” death in advance of the actual physical death of an individual body. Neurodegenerative diseases, such as Alzheimer’s (AD) and Amyotrophic Lateral Sclerosis (ALS), are exemplary of a dual challenge for such person centered approaches: a search for a form of care in circumstances when there is no cure and when the disease is always fatal; as well as the challenge of giving form to death, of shaping the extent to which, and manner in which, the body is managed during the process of dying. Through ethnographic inquiry based in care homes, and hospitals, we seek to observe practices of care for people suffering from neurodegenerative diseases, within the emergence of new frameworks for the end of life. The study has targeted two contexts: France and California, political settings that have recently implemented new legal frameworks for governing the end of life; specifically voluntary assisted dying for certain illnesses in California (including ALS), and the clarification of legislation around terminal sedation in France. Thus, in the French and the Californian contexts, the central question asked by this project is: for lives whose cerebral and physical integrity is threatened, how is care that seeks to maintain personhood put into practice, up to death? Given available techniques and organizational settings, what are the uncertainties and breakdowns that patients, caregivers, kin and medical professionals are confronted with? How do they endeavor to work through them and to what ends? Given new and variable possibilities for ending life, terminal sedation and voluntary death, we seek to look at the ways in which these techniques for ending life are made to cohere with ideas about caring for the person.
Conducted by a team with expertise in medical anthropology and the anthropology of ethics, this inquiry will unfold over three years. The project draws on very strong partnerships with the neurological team at the Memory and Aging Center (MAC) at UC San Francisco, and the Institut de la Mémoire et de la Maladie d’Alzheimer (IM2A) at the Salpêtrière Hospital, Paris. This project will produce both scientific and lay publications which will nourish not only public political debate, but also provide tools for medical practitioners, suffering persons, and their families, in the form of descriptive case studies of the different ways in which care in living and dying can be connected. Furthermore, our programme includes workshops with key stakeholders (neurologists, patents and their families), as well as an international workshop to foster international exchange and discussion of results.