L'hospitalisation à domicile et la prise en charge de la fin de vie : le point de vue des patients et de leurs proches

Abstract

The research objective is to clearly define and position the activities surrounding home-health and hospital care (HAD) in the context of a patient's final stage of life. How does it allow the patient to remain at home? How is the division of labour distributed between the various actors: patients, relatives, and home health care providers? What is the positioning of each one with respect to who is most vulnerable and likely to be deceived in these situations? A qualitative study, financed by the Fondation de France, was carried out using semi-guided interviews to converse with patients who were approaching the end of their life, their relatives and loved ones and their home-health caregivers in 2002 and 2003. This article presents the point of view of the patients and their loved ones on the management of their care in this final stage of life which is provided through home-delivered hospital care. Whether it involves the installation of home-based hospitalisation equipment and services, or the aura of the most sensitive period which is corresponds to approximately 15 days or of the ensuing management when this period exceeds 15 days, the patients all have a way by which they seek their care provision and management on the one hand comprehensive, but also with regard to the providers and supervisors in terms of their respective individual roles. They discover that the working conditions of the care providers with whom they are in contact numerous times per day are often difficult, and can induce this aspect of loneliness or solitude. Patients actually manage and oversee themselves in a very responsible and active manner, with the preoccupation of mastering the situation, which sometimes serves to occasionally relieve the care givers of some pressure.