SEL-E
Self-determined decision-making regarding the end of life
Type of project: Exploratory research
Disability concerned: Mental disability
Topics: Autonomy, Education, Services and communication, Health, Self-determined end of life, Decision
Status: Completed
The aim of the project is to assess the themes and issues that preoccupy people with cognitive disabilities and professionals in institutions with regard to the end of life of residents. This knowledge will be used to develop a range of services tailored to needs, which will encourage reflection on the issues of life and death.
The aim of advance care planning is to protect and reinforce the self-determination of the person concerned with regard to the choice of therapeutic objectives and treatments in emergency situations, but also in end-of-life situations (ASSM 2023). This presupposes in-depth reflection on one’s own values, life goals and perceptions of quality of life, with reference to experiences already encountered (Windisch et al. 2023). Although the right to self-determination and participation of people with disabilities is increasingly recognised, there are still gaps in research on how anticipatory healthcare planning, particularly with a view to the end of life, should be designed so that people with cognitive disabilities can benefit from it (Schäper 2023; Wicki 2015). The aim of the project was to identify the questions and needs of people with cognitive disabilities and professionals in terms of anticipatory health planning for the end of life, and to use the results to help develop specific services for people with cognitive disabilities that encourage reflection on the issues of life and death. Individual interviews and two workshops were organised for this purpose.
The results give a varied picture. For some people with cognitive disabilities, it is important to talk about this subject, while for others it has been difficult or not (yet) the right time. Among professionals, the subject is present and sometimes integrated into daily care. Here too, there are challenges to be overcome, ranging from the question of the right time/right person to the question of how to overcome communicative and cognitive barriers. At the final workshop, the research question was addressed using the LEGO® Serious Play® method. This method proved to be a good complement to the guided interviews.
We were very well received in the institutions with this topic, as it is clearly very topical and there is still uncertainty and a need for action in many places. The team learned that it is not always easy for people with cognitive impairment, like many others, to come to terms with their own finitude. Despite this, the workshops were marked by great openness and an excellent interpersonal atmosphere:
many people with disabilities were delighted to be able to talk about this rather taboo subject for once.
The interdisciplinary collaboration also made it possible to experiment with a new creative method (LEGO® Serious Play®).
Once again, we found that the participation of people with cognitive disabilities in the project team reaches its limits when the duration of the project leaves no room for manoeuvre.
Asking people with cognitive impairments about their own end of life in relation to health planning is a major challenge. Methods are needed to enable people with cognitive impairments to reflect on their end-of-life wishes and to make them known, without this reflection being associated with excessive fear and anxiety.
The question of appropriate measures must be addressed as part of a follow-up project. The LEGO® Serious Play® method will be used. The aim is to describe as concretely as possible a tool for reflecting on and communicating end-of-life wishes and needs, and to identify the necessary implementation steps.
Contact info
OST – Ostschweizer Fachhochschule: Institut für Soziale Arbeit im Lebensverlauf (ISAL)
Corinne Wohlgensinger