ELPIDA Course - English

_{Photo: Britt-Evy Westergård}

People with ID are often protected from knowledge about death, including their own. This excludes them from the opportunity to prepare themselves for the future, and be involved in care planning, if they wish so. They will not be able to participate in decision-making around type and place of care and treatment, nor in discussions around funeral wishes and making a will. A culture of openness and inclusion, where people with ID are given opportunities to think and talk about death-related issues throughout the life cycle, can be an important foundation for helping them prepare for their own terminal illness and death. Planning and preparing for the end of life is not a one-of event, but should be revisited regularly (1:63-64). 

People with ID may wish to engage with what is happening at the end of their life and should be given the same opportunities to talk about their death as anyone else. This will require an understanding of how the person communicates and facilitating the person to take part in conversations about death and dying. It will also require professionals to adapt their communication by giving time to the person with ID, using accessible information as appropriate to enable communication to and from the person. There are now a number of tools and resources available to support advance care planning (ACP) for people with ID. 

ACTIVITIES:

• Google the topic 'advance care planning' in your own language and find out if your country has developed such a tool. Compare the contents of your finding to:

1. your child/sibling/client’s needs and
2. the 13 consensus norms - those you think are relevant (see activities before this chapter) 

• If possible, talk with your child/sibling/client about their wishes in the end of life and make a plan together. Be careful when you have this conversation, it is important that no one gets scared.