SEL-E

Studies show that people want to think about the end of their lives at an early stage, and the need to adapt the structural conditions of the healthcare system with regard to support for people at the end of their lives is also increasing in society as a whole as a result of demographic change. Schäper (2023) points out that the desire for self-determined reflection on the end of life and the increase in average life expectancy can also be observed among people with cognitive disorders.

Citing the right to self-determination (art. 3 CRPD) and to health care (art. 25 CRPD), research projects have been launched in recent years to study end-of-life health planning in people with cognitive impairment.

In addition to the importance of organisational framework conditions and staffing, these qualitative studies show that concepts of self-determination for people with cognitive impairment are essential in decision-making. Despite the initial implementations, however, it is clear that there are still major gaps in the research, particularly with regard to the organisation of self-determined decision-making in the field of advance healthcare planning for people with cognitive impairment. Nor do the research projects carried out to date seem to respond sufficiently to the aspects of participatory research.

Franke (2023) also points out that capturing people’s wishes in relation to end-of-life situations, as well as representations of quality of life, are particularly challenging.