Palliat Med. 2016 Mar 24. pii: 0269216316640421. [Epub ahead of print]
Bekkema N, de Veer AJ, Hertogh CM, Francke AL.
Seven group interviews including 33 people with mild intellectual disabilities in the Netherlands explored care relationships at the end-of-life. The main themes were a) dealing with wishes and b) ‘being there’. it was important for the wishes of the ill person to be ascertained (including preferences relating to personal care, end of life and funeral),that these are recorded and honoured; there was an emphasis on control and respecting autonomy. They need people who are there, practically (providing help and care if needed), emotionally (listening and providing empathy, especially from familiar people), socially (including social activities) and spiritually (providing existential guidance and support), with an emphasis on providing positive experiences. The authors conclude that there is added value and potential of involving people with intellectual disabilities in studies on end-of-life care.
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