Supporting people with intellectual disability to understand end-of-life

The Talking End of Life (TEL) project culminates in a world-first research-based online toolkit designed to support disability staff and carers to deliver end-of-life information to adults with intellectual disability, and discuss end-of-life planning.

Chief Investigator Professor Roger Stancliffe from the University of Sydney said while Australia leads the world in end-of-life care and advance care planning, one group of Australians has been routinely excluded from these discussions.

“Our research shows people with intellectual disability are often excluded from decisions about their own end of life and that of their parents, family and friends which can be very traumatic, leading to prolonged grief or adding to mental health issues,” said Professor Stancliffe.

The Talking End of Life project is a collaboration between researchers from the University of Sydney, Western Sydney University, HammondCare, Flinders University, Unisson Disability and Caresearch. It reflects 10 years of Australian research on end-of-life and people with intellectual disability.

Gail Jeltes, General Manager for Client Services at Unisson said “People with intellectual disability already make important decisions about employment, relationships and living arrangements. So, with assistance, they can be supported to understand and plan for death and dying”.

However, the research shows that currently many people with intellectual disability encounter death without understanding what is happening, both when loved ones die or when they themselves approach death.

Western Sydney University’s Dr Michele Wiese said many people with intellectual disability have limited understanding of death and dying, as people are hesitant to talk with them about these issues.

“Helping people with intellectual disability to understand needs repeated participation in conversations and activities about end-of-life.  That is the basis of the Talking End of Life online toolkit – giving carers the information, skills, confidence and comfort to have these conversations.”

Professor Stancliffe said, “our research shows there are several key reasons why many carers avoid conversations such as fear of upsetting the person, concern that the person does not understand, carers feeling that they do not know what to say or how to explain dying and death, or sidestepping the topic due to their own discomfort.”

“The TEL toolkit deals with all these issues to help carers such as disability support staff, have conversations about end of life in a supportive and sensitive way.”

The toolkit aims to equip direct support professionals and carers with the information to begin essential end-of-life conversations early.

Dr Wiese added, “A key message in TEL is to have these conversations throughout life, starting when people are well.”

The project is supported by funding from the Australian Government Department of Health under the Public Health and Chronic Disease Grant Program and launches today in the lead up to National Palliative Care Week held 20 – 26 May.

The toolkit comprises twelve modules on topics including what death is, funeral wishes, and bequeathing. Each module contains individual stories, video examples, practical tips, resources, and links to available research that underpins the content.

The toolkit is available at caresearch.com.au/TEL/ and is free to access.