Background Shared decision making (SDM) is the process in which the professional caregiver and patient (or the representative) both provide input and jointly discuss and decide which treatment policy will be followed. SDM is seen as an important component of the ACP process. Little is known about SDM in people with intellectual disabilities (ID).
Aims To provide an overview of the application of SDM in people with ID in the palliative care phase.
Methods In this scoping review, we systematically searched in the Embase, Medline and PsychINFO databases for studies that evaluated the SDM process in people with ID in the palliative phase.
Results Of 402 titles and abstracts, 14 full studies were included. 10 were empirical studies, 3 were opinion papers and 1 was a legal report. Papers show an increasing focus on the importance of involvement of people with ID themselves, or - if applicable - their loved ones, in making medical decisions around the end of their lives. None of the papers described SDM in the palliative care phase, and no best practices, guidelines or definitions were shown for SDM in the palliative care phase.
Conclusion This study shows that there is no consensus-based model about what SDM regarding people with an ID should look like. General recommendations indicate that we should involve people with an ID more in the decision-making process by providing them an appropriate environment full of support.
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