People with an intellectual disability (ID) are more likely to die at a younger age than people without ID , but the life expectancy of people with ID has improved over time.  As the population of people with ID ages, they experience increasing rates of life-limiting conditions such as cancer, respiratory and circulatory diseases. However, people with ID are under-referred to palliative care and there is currently no model of palliative care in Australia or specific guidelines for services to meet their needs. Past research has shown that there is limited discussion of advanced care planning for people with ID and few have their wishes documented, that carers of people with ID who require palliative care have unique support and information needs, and that professionals often lack knowledge about, training and confidence in their ability to support people with ID who require palliative care. Ensuring that care is accessible for all Australians including people living with disability is one of six key principles defined in the National Palliative Care Strategy as being fundamental to good palliative care. The issues outlined above highlight the need for improvements in the provision of accessible and appropriate palliative care for people with ID.
A second principle highlighted by the Strategy is that this care should be high-quality and evidence-based and as part of that the need for the collection of meaningful data is clearly stated. Our team is launching a research program that will use a combination of large linked datasets and qualitative methods such as interviews to examine access to and the impact of palliative care for people with ID. We will work with people with ID, carers, and professionals to co-design a tailored model of palliative care for people with ID and will trial this new model of care within the South Western Sydney Local Health District in New South Wales. We will develop and launch a Toolkit that will describe ways for palliative care services nation-wide to meet the needs of people with ID. Finally, we will approach other research groups and organisations to develop ways to ensure future routine collection of good quality national data to monitor, evaluate, and report on access to and outcomes of palliative care services for people with ID. Our project 'Improving palliative care services for people with an intellectual disability' commenced in October 2020 and will run through to September 2023.
- Trollor J, Srasuebkul P, Xu H, et al. Cause of death and potentially avoidable deaths in Australian adults with intellectual disability using retrospective linked data. BMJ Open 2017;7:e013489. doi: 10.1136/bmjopen-2016-013489
- K Patja, M Iivanainen, H Vesala, H Oksanen, I Ruoppila. Life expectancy of people with intellectual disability: a 35-year follow-up study. J Intellect Disabil Res. 2000 Oct;44 ( Pt 5):591-9. doi: 10.1046/j.1365-2788.2000.00280.x. PMID: 11079356. DOI: 10.1046/j.1365-2788.2000.00280.x
Dr Rachael Cvejic, Lecturer, Department of Developmental Disability Neuropsychiatry, UNSW Sydney