Tuffrey-Wijne, Irene and McLaughlin, Dorry (2015) Consensus norms for palliative care of people with intellectual disabilities in Europe: EAPC White Paper. (Other) Milan, Italy : European Association of Palliative Care.

Abstract

People with intellectual disabilities make up an estimated 1-3% of the population. They are increasingly living into old age, with an associated increase in the need for palliative care provision; however, many do not currently have equitable access to palliative care services. Whilst their palliative care needs may be no different from those of the general population, they often present with unique issues, challenges and circumstances that make it more difficult to meet those needs. Therefore, they need focused consideration. There are complexities in describing norms that are relevant and achievable across Europe, as there are huge variations in the provision of both palliative care services and intellectual disability services. This White Paper aims to provide guidance on what good practice looks like, regardless of social and geographical setting or national and cultural differences. The norms are aspirational, presenting a European-wide consensus on quality goals that have to be aimed for in order to achieve good palliative care for people with intellectual disabilities.

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