What is it about?
This article focuses the experiences of people with intellectual disability who communicate informally expressing their will and preferences at the end of life. It highlights the importance of relational closeness particularly for people with intellectual disability who don't use speech to communicate.
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Why is it important?
People with intellectual disability who communicate informally rarely have their preferences realised in the decisions that are made about them. This article describes mechanisms to change this particularly at the end of life.
Perspectives
It was an honour to write this article and reflect on the incredible experience of Neil and his family at the end of his life. I hope the article goes some way to honour Neil's life and to highlight the importance of relational closeness and knowing someone's life story in supporting them to make decisions.
Dr Joanne Watson
Deakin University
Read the Original
This page is a summary of: Supporting end of life decision making: Case studies of relational closeness in supported decision making for people with severe or profound intellectual disability, Journal of Applied Research in Intellectual Disabilities, August 2017, Wiley,
DOI: 10.1111/jar.12393.
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