Advance care planning for people who have lost their capacity for discernment

Principal investigator: Prof. Ralf Jox
Co-investigator: Dre Eve Rubli Truchard
Researcher: Dre Laura Jones

Duration: 2017-2022
Funding: Alzheimer Suisse and a private foundation

The approach of the advance care planning project requires the elderly person to have retained his or her capacity for discernment. When they have lost this ability and have not prepared their advance directives or taken part in an advance care plan, the decision-making processes and planning are complicated by many factors.

In Switzerland, however, the proportion of people who make use of advance care plans or advance directives remains low. Moreover, they generally enter EMS at an advanced age. As a result, many EMS residents have already lost their ability to discern before they have written their advance directives.

A advance care planning project by proxy, in which discussion of the patient's presumed wishes is conducted by health professionals with the patient's representative (usually a relative), could increase the autonomy of patients who have lost their capacity for discernment.

The purpose of this exploratory qualitative study is to provide a description of usual practices in care planning for persons who have lost their capacity for discernment residing in EMS. It also aims to study how this project should be conducted and to identify barriers and facilitators.

It represents a first step towards an understanding of the advance care planning project by proxy and allows the development of a tool to facilitate its implementation. Such a tool would make it possible to promote the project of anticipatory care for patients as close as possible to their wishes.

The scoping study has been completed. The interventional pilot project is underway. While waiting for the results, an article on this subject published in the edition 1/2022 of the magazine of Alzheimer Suisse is available here (in French).