Shared decision-making with people with intellectual disabilities in the last phase of life

The overall aim of the research described in this thesis was to inform and facilitate shared decision making of people with intellectual disabilities who are in the palliative phase of their illness, their relatives and support staff. The research described in this thesis started with the acknowledgement that an aid for shared decision making in the palliative phase with people with intellectual disabilities is desirable (1, 2), but that such an aid did not exist. A scoping review identified ten studies on how people with intellectual disabilities in the last phase of life are involved in decision-making processes about their care and treatment. These studies all emphasised the relevance of involving people with intellectual disabilities themselves, or at least their relatives, in making decisions at the end of life. Only two papers described processes of decision-making in which persons with intellectual disabilities actively participated. We concluded that knowledge about participation of people with intellectual disabilities in the end-of-life decision-making process is mostly lacking. In order to better align palliative care to the values of people with intellectual disabilities, we developed a conversation aid, called In-Dialogue (3). In a Delphi process, an expert panel completed online questionnaires about the relevance and feasibility of draft versions of In-Dialogue. This expert panel consisted of 11 people with intellectual disabilities, 14 relatives, and 65 care professionals. In two rounds, the members of the panel reached agreement on different components of In-Dialogue, including its lay-out. The In-Dialogue conversation aid consists of a box containing a pad that looks like a board game, see Figure 1. The aid focuses on four main themes: 1) who are you; 2) illness and end of life; 3) making choices; and 4) application, i.e. sharing the decisions made