Palliative Care and Intellectual Disability
People with intellectual disabilities make up an estimated 1–3% of the population. This is an aging population, with an associated increasing need for palliative care provision. However, many do not have equitable access to palliative care services, for a variety of reasons. They often have issues, challenges, and circumstances that make it particularly difficult to meet their palliative care needs. This includes communication difficulties which affect all the aspects of palliative care provision; difficulties around insight and the ability to participate in decision making; unconventional ways of expressing signs and symptoms of ill health and distress; multiple comorbidities; complex family and social circumstances; and higher levels of behavioral or psychiatric problems.
This chapter describes the unique challenges in meeting the needs of people with intellectual disabilities at the end of life. It is based on the White Paper on Intellectual Disabilities, published by the European Association of Palliative Care in 2015. It addresses the following key areas: equity of access; communication; recognizing the need for palliative care; assessment of total needs; symptom management; end of life decision-making; involving those who matter; collaboration; support for families and carers; preparing for death; bereavement support; education and training; developing and managing services. This provides a comprehensive overview of the current state of the art.
KeywordsIntellectual disabilities End of life Palliative care Advance care planning Bereavement
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