Developing research, policy and practice in palliative care for people with intellectual disabilities will benefit everyone

Tuffrey-Wijne, I. et al. Palliative Medicine. July 2016 vol. 30 no. 7613-615

People with intellectual disabilities are a sizeable minority group, making up approximately 2% of the population. They need specific attention when they reach the end of life. While many of the palliative care needs of people with intellectual disabilities may be no different from those of the general population, they often present with unique issues, challenges and disadvantageous circumstances that make it more difficult to meet those needs.

It has been shown decisively that people with intellectual disabilities have poorer health outcomes than the general population for reasons unrelated to the causes of their cognitive impairment, but rather, due to failings within healthcare systems. This is compounded by persistent negative attitudes and assumptions about quality of life of people with life-long cognitive impairments.1,2 These failings are not limited to acute hospital services or social care settings. In 2013, the Confidential Inquiry into Premature Deaths of People with Intellectual Disabilities (CIPOLD), which investigated the deaths of 247 people with intellectual disabilities, reported that

people with [intellectual] disabilities were less likely than the comparator group of people without [intellectual] disabilities to have access to specialist palliative care services and received less opioid analgesia in their final illness. Their deaths were sometimes described as not being planned for, uncoordinated and poorly managed.3 (p. 119)

The specific challenges for palliative care services have been well described.4,5 They include lack of knowledge and experience among palliative care staff in caring for people with intellectual disabilities, problems with symptom recognition and management, severe communication challenges, patients’ difficulties in understanding complex concepts including death and dying, multiple co-morbidities and complex social situations.

Read the full editorial here

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