Cooperative decision making with mentally handicapped patients needing palliative care

Project summary

When mentally handicapped people need palliative care, it is extremely desirable to involve them in the decision making. However, this can be difficult and is not always a given. This project will stimulate collaborative decision making in this group.
An existing tool for collaborative decision making will be modified for use with mentally handicapped. How to modify will be determined in consensus with experts and involving the patients and their families/caregivers. And educational package will also be developed. The tool will be implemented in 20 homes for mentally handicapped, these falling under 4 different organizations. The implementation will be evaluated by 128 family members or caregivers of the participating clients.

We expect that the developed tool and the associated educational module will be broadly used by caregivers to involve mentally handicapped in their own palliative care decisions. With this, the mentally handicapped will experience a palliative care process that better matches their own preferences.