Palliative and end-of-life care for people with learning disabilities

This chapter highlights some of the issues and challenges which exist in the provision of palliative and end-of-life care for people with learning disabilities and how some of these can be addressed. The challenges fall into four key areas: assessment, communication, consent, and bereavement. The reader is also signposted to websites and resources which are helpful in caring for people with learning disability at the end of their life. Concerns exist around choice and the quality of end-of-life care that people with learning disabilities may be offered. A number of different terms have evolved over the years for ‘learning disability’. Currently this term is used in the UK, but in Europe and in other parts of the world, the term ‘intellectual disability’ is used. Internationally there is a consensus that a learning disability can be identified when the following criteria are present: intellectual impairment (known as reduced IQ), social or adaptive dysfunction combined with reduced IQ, and early onset. It is thought that around 2.5% of the population in the UK has a learning disability, but it has also been predicted that this may increase by 1% per year over the next number of years.