Disclosure and plan of care at end of life: Perspectives of people with intellectual disabilities and families in Ireland

Professionals are reluctant to discuss sensitive information with people with intellectual disabilities. People with intellectual disabilities and families wish to engage in end-of-life discussions. People with intellectual disabilities expressed how they could handle bad news and they felt that this information could be used to help make choices. People with intellectual disabilities and families want to develop a plan based on their choices and wishes and there is a need to respect this at the end of life. Abstract: Background Recently, more and more people with intellectual disabilities have been dying from life-limiting conditions, and on many occasions, people with intellectual disabilities have not been informed of this. There is limited evidence concerning the views and opinions of this cohort regarding the information that is needed in order for decision-making to occur at the end of life. Therefore, this study aimed to explore the perceptions of people with intellectual disabilities and families in terms of the information that is needed as part of end-of-life decision-making. Materials and Methods A qualitative approach was employed to explore the information needed by, and the decision-making ability of, people with intellectual disabilities at the end-of-life phase. One-to-one interviews were carried out with nineteen people following the obtaining of ethical approval. The constant comparative method was used to analyse the data. Results It was found that people with intellectual disabilities were comfortable with, and wished to know about, what was happening in their lives, including the existence of life-limiting conditions, so that they would be able to create a good plan for their future care. It was also expressed how it was essential to create a plan of care that allowed professionals to provide excellent care and use of which prevented the occurrence of any ambiguity. Conclusions The study found that people with intellectual disabilities, especially those with mild and moderate, are able to handle complex and sensitive information and make decisions for themselves regarding their care when adequate support is in place.