People with intellectual disabilities will be better equipped to deal with death and palliative care thanks to a new project.
The project responds to a decade-long Australian study which found people with intellectual disabilities were routinely excluded from discussions around death and dying, both when it came to themselves and their loved ones.
As part of National Palliative Care Week researchers have launched Talking End of Life (TEL), an online toolkit to support carers, health professionals and disability staff to be able to have these conversations.
“Some don’t fully understand dying and death, they don’t know that they themselves will die one day,” says Professor Roger Stancliffe from the University of Sydney.
“People with intellectual disabilities don’t have any say in that aspect of their life, but they can learn.”
Talking End of Life is an online toolkit to support carers, health professionals and disability staff have conversations around death. Photo: Western Sydney Uni Source: Western Sydney University
As people with intellectual disabilities are capable of making decisions around employment and housing, Professor Michele Wiese of Western Sydney University says it is illogical to eliminate their choice when it comes to death.
“There is some strong evidence to say they themselves are not told when they are dying and I think that is a fundamental human right,” she says.
The research showed a similar situation occurred for family and friends of people with intellectual disabilities who were dying or had passed away.
The study found the main deterrents in initiating these conversations was a fear of causing distress, personal uncertainty on how to deal with the conversation or their own discomfort in talking about death.
Professor Wiese says sheltering people with intellectual disabilities from death could instead be counterproductive and instead manifest into complicated grief.
“If they are left out there is an increased risk of complicated grief and serious mental health problems if they are not allowed to grieve in a public way.”
Kathy was one study participant in the project who met Professor Wiese four years after the death of her mother.
“When Kathy’s mother died years ago, she said her father and sister decided she was not able to cope with the funeral and she still felt angry after all this time,” says Professor Wiese.
“If they are left out there is an increased risk of complicated grief and serious mental health problems if they are not allowed to grieve in a public way.”
After her participation in the project, Kathy’s caregivers allowed her to visit her mother’s grave and Professor Wiese says: “She talks now about how physically saying goodbye made her feel better.”
For the person with the intellectual disability the TEL modules cover topics such as grief, physical death, organ donation and funeral care; and for their support network the focus is on strategies around successfully facilitating these conversations.
Each module contains personal stories, video examples and practical recommendations underpinned by the research.
Professor Wiese said the key message of the TEL initiative is: “to give them choice to understand whether or not they want to participate.”
