Removing dying and death ‘double taboo’ for people with intellectual disability

People with intellectual disability will be helped to overcome a “double taboo” in talking about dying and death through a new toolkit designed to train care staff.

A Chief Investigator with the Dying To Talk project, HammondCare’s Associate Professor Josephine Clayton, said there was already a widespread taboo in society in regard to talking about dying, death and bereavement.

This becomes a “double taboo” for people with an intellectual disability when well-meaning care staff and loved ones seek to protect them from end of life realities.

A/Prof Clayton said the Dying to Talk project has sought to research the needs of people with an intellectual disability in understanding and discussing dying and death and also the best ways of communicating these issues.

She describes being drawn to involvement with the project, run by The Centre for Disability Research and Policy at the University of Sydney (USYD) with partner organisation Sunshine (a Sydney-based service provider to people with intellectual disability), after providing palliative care support for people with intellectual disability.

Longer lives, more encounters with death and dying

“At Greenwich Hospital we have been privileged to provide care for a number of patients with intellectual disability who had life limiting illnesses. I was struck by how care staff were almost like family, often because the person has lived in a group home for many years.

“Usually care staff were very protective about passing on information about the patient’s condition and I realised we did not really have a good understanding as to whether the person should be more fully informed, when or how,” A/Prof Clayton said.

The issue also arose when the person with intellectual disability was facing the loss of a parent, other close relative or a fellow group home resident, situations that are becoming more common as life expectancies grow.

It was in this context that A/Prof Clayton was contacted by Prof Roger Stancliffe and invited to be a part of the three-year ARC Linkage project (2013-2016), Dying to Talk, as a palliative care specialist with a particular interest in Advanced Care Planning.

The project aims to ensure that adults with intellectual disability know about end of life and receive support to make decisions and plans for it.

World-first evidence-base

The team - which also includes Dr Michele Wiese from the University of Sydney, Prof Sue Read from Keele University, UK and Gail Jeltes from Sunshine – are developing and trialling a system of training staff of community living services to achieve this aim.

They will also evaluate a range of impacts of using the toolkit for both staff and adults with intellectual disability, including their understanding of dying and death, knowledge of planning for the end of life, emotional distress, and fear of dying and death.

A/Prof Clayton said this would provide a world first evidence-base regarding the consequences of educating people with intellectual disability about a part of life that affects all people.

She said that while trialling and then evaluation were still to be concluded, early anecdotal feedback had been very positive.

Some of the keys to good communication included talking about death and dying when the person with intellectual disability was in good health, using every day examples in a matter of fact way, checking that the conversation is being understood and repeating information.

Apart from A/Prof Clayton’s role as an investigator, she also chairs the Dying to Talk project’s expert advisory group of which HammondCare Pastoral Care Coordinator, Des Meers, is also a member.

Greenwich Hospital also opened its doors to allow filming for some scenes in a video that is being released as part of the training toolkit for care staff.

“This is an amazing opportunity to support care staff and families in offering people with an intellectual disability that basic human right of knowing about and preparing for dying and death.”

For more information about the project, visit the Dying to Talk website.


This media release was timed to coincide with Dying to Know Day on August 8. It is an annual day of action dedicated to bringing to life conversations and community actions around death, dying and bereavement. More here.