Literature review of best health and social care practices for individuals with intellectual disabilities encountering the end of life

Abstract

This Literature Review (LR) aimed to identity what were care best practices for individuals with intellectual disabilities (ID) encountering the end of life. Five EBSCOhost academic databases were used to choose thirty primary research articles, from which four emergent themes were identified: (1) end-of-life care approaches, policies and guidelines; (2) challenges experienced by members of the health and social care team; (3) the importance, challenges and benefits of communication; and (4) examples of good practice including rounded end-of-life care that emphasises working collaboratively and inclusively with family and friends. Further, overall findings revealed that there was an absence of policies, procedures and guidelines governing these critical end-of-life care practices, including decision making processes. This means that committed members of the health and social care team working to engage with and support individuals with intellectual disabilities at the end of life are habitually underprepared as they lack appropriate communication skills, experience of dealing with death, relevant training and formal support. On top of this, the LR indicated that there was inadequate collaborative, interagency and multi-professional working. This requires also the integration of the views of the individual with disabilities into models of care, using plain language when communicating with them, especially when breaking bad news that extents to their families and friends. Similarly, the provision of integrated services that respects and fosters autonomy of the dying person with intellectual disabilities. Finally, the LR noted an absence of theory and universal good practice guidance/frameworks on dying, death and intellectual disabilities, and calls for future research framed within the human rights approach.