Practical approaches toward improving end-of-life care for people with intellectual disabilities: effectiveness and sustainability

People with intellectual disabilities (ID) experience many barriers in accessing quality health care for serious and terminal illness, including delayed diagnosis, as signs and symptoms of illness are misinterpreted There is growing evidence that palliative care services are underused by people with ID.A 3-year project aimed at exploring ways of increasing access to palliative care services by people with ID in South West London was conducted. A project group designed training sessions for both ID and palliative care staff involving four hospices and 228 care homes. Evaluators used interactive cycles involving discussions and interviews to map learning and identify constructive ways forward.In general, the study found that there was a lack of understanding of each other's role between palliative care professionals and ID staff, with each unsure of what the other service is providing and how it is run. Recommendations include securing a development worker for ID and end-of-life care; conducting training for ID care staff; establishing how ID services are organized within the local area; linking to national training programs; ensuring that senior management is proactively involved; and ensuring that the goals of any initiative are clear and measurable.