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
with the relevant people. The box includes 13 conversation cards, providing support
staff with phrases to facilitate communication; 50 cards with illustrations related to the
four themes, which support expressing thoughts or feelings; and a personal workbook
(also available digitally). In addition, a manual was developed to give support staff and
relatives tools to get started with In-Dialogue. In the manual, the purpose of each conversation card is described, and it provides additional recommendations to facilitate the
conversation with the person with an intellectual disability. A corresponding e-learning
module and four-hour training were developed to prepare support staff for having In-Dialogue conversations.

We examined the extent to which In-Dialogue helps to better align care
in the last phase of life to the preferences of the person with an intellectual disability.
We performed a pragmatic trial in four Dutch residential care facilities for older people
with different levels of intellectual disabilities. In the In-Dialogue group, support staff (n=97) followed a training on having In-Dialogue conversations in practice. Support staff then conducted In-Dialogue conversations with people with intellectual disabilities and/or their representatives. After an interval of at least a month after the first In-Dialogue conversation, relatives of study participants were sent a questionnaire that focused on “Honoring wishes and values”, “ Involvement in the decision-making process and “Adapting care to values and preferences”. The control group received regular care and their relatives were sent the same questionnaire. We performed multivariate regression analysis to assess study outcomes.