Dying at home is often thought to be the best option for people with learning disabilities who have a terminal illness, but Irene Tuffrey-Wijne disagrees
This article considers the factors that influence where people with learning disabilities are cared for at the end of life, and where they die. It is based on the findings of an in-depth study of 13 people with learning disabilities who had cancer, ten of whom died. Dying at home was not always the best option. Features of a good place of care included being in safe surroundings with familiar people, being free from pain and anxiety, and having carers who were well supported. People’s own preference were a factor influencing the place of care; others were the illness trajectory and availability of social and outside support. The author argues that understanding the person’s wishes and needs requires careful listening, plus consideration of the realistic options, with constant adjustments to a changing situation. There should be no assumptions about what is best.
Learning Disability Practice. 12, 6, 16-21. doi: 10.7748/ldp2009.07.12.6.16.c7125
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