Vers la compréhension des demandes d’aide à mourir de résidents d’EHPAD. Une étude qualitative multicentrique

Abstract

ContextMoving into a nursing home is the cause of considerable upheaval for the elderly. The end of life is a reality in these establishments and residents are regularly confronted with it. Death is part of life in a nursing home and at the same time, it is one of the least discussed subjects due to avoidance strategies. The desire to die can take many forms, from suicide to refusal of care, and it is studied in particular through an analysis of requests for euthanasia and assisted suicide. The studies conducted on this subject show that the wish to die is a request expressed by a significant number of patients at the end of their life, regardless of the legislation adopted by the countries. Few studies have analyzed the demand for euthanasia or assisted suicide in a country where it is prohibited. ObjectivesA qualitative study is needed to provide an in-depth analysis of the expressions used by residents who make a request for euthanasia or assisted suicide, in the specific context of nursing homes. The DESAGE study (Demandes d’Euthanasie et de Suicide Assisté des personnes Âgées) is a multi-centric qualitative study which aims to describe, analyze, and understand, through semi-directive interviews, the determinants of requests for euthanasia and assisted suicide among residents of these facilities. This research is part of a comprehensive approach to these requests based on the residents’ verbatim statements. Patients, materials and methodsThe data collection was carried out in several nursing homes in a region of eastern France near Switzerland. For inclusion in the study to be effective, explicit requests for assistance in dying had to be made to health professionals. Following inclusion, an initial semi-directive interview of the resident was conducted. A second interview took place several weeks later to understand the timing of such a request. The analysis of the data followed the logic of thematic content analysis. ResultsData collection took place from May 2019 to July 2021 in seven nursing homes in France. Seven situations were explored. These testimonies shed light on the reality of a little-investigated field and highlight meaningful life pathways. The testimonies of these individual inform us about the requests for euthanasia and assisted suicide that are made, and undeniably place them in a singular context. Suffering, whether physical or psychological, is present in the statements and death is perceived as the only solution to relieve this suffering. Multiple factors underlie it: dependence, the difficulty of finding meaning in one's current life, loneliness, the feeling of boredom, the impression of being a burden on one's loved ones. It is also linked to the fear of a deterioration of the physical state and the apprehension of the conditions at the end of life. It is rooted in an experience marked by successive, sometimes brutal, losses: physical losses linked to ageing, the loss of autonomy, the loss of reference points in the initial environment when entering a nursing home, and in some cases the loss of a spouse or main caregiver. ConclusionIt would be relevant to introduce into the daily practice of caregivers the implementation of more tools that promote, for example, the deployment of the function of restraint. Focusing on taking care of the body could be an illustration of this, because when we enhance the body, we also enhance the psyche. Moreover, the analysis of the discourse makes it possible to provide the caregivers with keys to understanding. It is an assignment to find common issues in the exchange. It is in this space of speech that the answers can be found and that an importance is given to the understanding of a common construct. The speech of a person who asks to die is an attempt to express the unspeakable, an attempt to express a singular suffering. It is essential to question the function of speech, what is at stake, and to train caregivers to confront these issues.