Advance Care Planning in palliative care for people with intellectual disabilities

23 februari 2021

Bram’s case shows that proactive and timely communication about the wishes and preferences for future medical treatment and care and the documentation of these wishes is of the utmost importance for people with an intellectual disability (ID) and their relatives. This process is referred to as Advance Care Planning (ACP). Despite the importance of ACP, it is not yet common practice, and situations as described in Bram’s case occur frequently. Decisions are taken on an ad hoc basis, without sufficient time to consider all the options or discuss wishes and preferences. This thesis aims to gain insight into ACP in palliative care for people with ID. It also describes the development, implementation and evaluation of an ACP programme for professionals in ID care. The present introduction to this thesis starts by providing information about people with ID and their lives in the Netherlands.

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