Preparing people with disabilities for the end of life

The first aim is to identify, through the literature and the experience of a group of players, the help that people with adult disabilities, particularly those who are ill or advancing in age, may need in various areas to consider and prepare for the end of their lives: information on the rights of patients and those being cared for, knowledge of support options in the event of a serious progressive illness and of the principles and possibilities of palliative care, help with understanding the role and choice of a trusted support person, help with communicating advance directives and funeral and testamentary arrangements, support with significant acts at the end of life.

1. The next step is to identify, with the members of the working group, the support methods that promote the self-determination of those concerned, i.e. informed free choice, and a relevant articulation of the players likely to provide some of this assistance (relatives, legal representatives, professionals from medico-social establishments and services and health structures, possibly volunteers involved in end-of-life support).

2. Finally, the aim is to experiment with the methods adopted in two categories of structures (a service for judicial measures for protected adults and one or more establishments and services supporting people with intellectual disabilities) in partnership with the relatives concerned by the situations, over a period of several months. This experiment will enable us to refine, complete or modify the benchmarks identified, and to find out about the satisfaction of people who have benefited from this support.

3. Finally, the forms of support and their desirable articulations will be presented in a guide to make them known and brought to the attention of all the categories of players involved.