Personnes polyhandicapées : dire la fin de vie, la mort et le deuil

Mortality in French people with polyhandicap/profound intellectual and multiple disabilities

“…Although knowledge of the health status and care management of the oldest individuals is lacking, a better understanding of the natural course of life of people with polyhandicap/PIMD would consequently allow optimising the preventive and curative care management strategies (Motawaj et al 2010;Le 2017;Rousseau et al 2019), which will prevent a worsening of the existing health condition and the emergence of new complications, whether or not related to this condition. Few robust data related to mortality and life expectancy are documented in France for this population, and the only ones that exist are old and do not include the population with polyhandicap as currently defined and deal with causes of death (Rousseau et al 2015b), support for people with polyhandicap/PIMD or the ageing of this population (Azéma & Martinez 2005;Belot 2016;Rousseau et al 2019). The international literature focuses on people with developmental disabilities, IDs or cerebral palsy (which are related but different clinical entities) (Hutton et al 1994;Patja et al 2000;Blair et al 2001;Hogg et al 2001;Bittles et al 2002;Hanaoka et al 2010;Lauer & McCallion 2015;Bourke et al 2017).…”

“…Few robust data related to mortality and life expectancy are documented in France for this population, and the only ones that exist are old and do not include the population with polyhandicap as currently defined and deal with causes of death (Rousseau et al . 2015b), support for people with polyhandicap/PIMD or the ageing of this population (Azéma & Martinez 2005; Belot 2016; Rousseau et al . 2019).…”