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 identi ed: (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 bene ts 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 ndings revealed that there was an absence of policies, procedures and guidelines governing these critical end-of-life care practices, including decision making processes. is 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. is 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.
Highlights
Members of the health and social care team often encounter difficulties in communicating effectively with people with intellectual disabilities [1]
These were: (1) end-of-life care approaches, policies and guidelines; (2) challenges experienced by members of the health and social care team trying to provide high quality, responsive, person-centred care to people with intellectual disabilities at the end of life; (3) the importance, challenges and benefits of communication in providing care to people with intellectual disabilities at the end of life; and (4) examples of good practice that include placing a high value on holistic end-of-life care that emphasises working collaboratively and inclusively with family and friends
Perhaps the most telling findings from this research is that, the cross-sectional mail survey data collection instrument was sent to 140 organisations, less than 20% (n25) provided copies of polices, and that the contents of the policies were vague in relation to people with intellectual disabilities
Summary
Members of the health and social care team often encounter difficulties in communicating effectively with people with intellectual disabilities [1]. Aside from the inherent difficulties routinely encountered when trying to communicate effectively with an individual with intellectual disability and the often emotionally fraught circumstances at the end-of-life stage, health and social care team members face a myriad professional challenges. These include attempting to provide care within a responsive, collaborative and inclusive person centred approach in the absence of, or limited, specific policies, procedures, knowledge, training, preparation and support. A survey completed by almost 150 directors of adult social services in local authorities in England indicated that there was going to be a £1.1 bn shortfall to social services budgets between 2015 and 2016, on top of the £4.6 bn cuts since 2010 [2]
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