Impact feature issue on Retirement & Aging for People with Intellectual, Developmental, and Other Disabilities
Talking End of Life... with People with Intellectual Disability
The online toolkit includes discussions aimed at discovering someone’s final wishes. Photos in this article courtesy of Talking End of Life: Introduction to the Online Toolkit.
Most people find it hard to talk about or confront death. Having an intellectual disability brings an additional challenge: it’s harder to understand things, especially if everybody won’t talk about it. The problems include:
- Being routinely excluded from decisions about their own end of life (Kirkendall, Linton, & Farris, 2017)
- Not being told of dying or death of family or friends, and not being invited to funerals (Forrester-Jones, 2013)
- Difficulty fully understanding what death is, made worse if carers are reluctant, or can't find the words to explain it (Stancliffe et al., 2016), (Wiese et al., Dew, 2013)
- Not understanding that plans can be made, for example, organ donation and funeral wishes, and instead letting others make the decisions, like family or doctors (Stancliffe et al., 2016).
- Carers avoid the topic because they fear upsetting the person with intellectual disability, or believe that they couldn’t understand, or the carer themselves might get upset. So, carers may do nothing and avoid the topic.
People with intellectual disability do experience death though, so it really can’t be avoided (Stancliffe et al., 2016).
Concerns about upsetting people seem to be unfounded.Researchers who have asked people with intellectual disability about end of life have reported no adverse effects (McEvoy, Treacy, & Quigley, 2017).And our own research shows no negative change in depression, anxiety or fear of death among adults with intellectual disability after six months of having more frequent conversations about the topic (Stancliffe et al., 2021).
Just like everyone, people with intellectual disability may become upset. The end of life is sad and stressful for all of us.As one mother said of her son at his father’s funeral, “He attended the funeral and was very, very upset as we all were” (McMaugh, Wiese, & Stancliffe, 2016). Denying these opportunities could mean extra problems, however, including complicated grief, where the painful emotions after the death of a loved one don’t get better with time. Sometimes these emotions are so upsetting that everyday life is completely overwhelming.
The challenge is finding ways to help people with intellectual disability understand dying and death so they know what’s going on.
How do I do this?
- Handy teaching skills
- Your role as a DSP
- Managing feelings
- Cultural beliefs
- Why is this important?
Teaching how to understand end of life
- Loss, grief, mourning
Teaching the planning options
- Organ tissue donation
- Care when dying
- Funeral wishes
A Way Forward
From Australia, a world-first free online toolkit: Talking End of Life…with People with Intellectual Disability (TEL) aims to help people with intellectual disability understand what death is, and how they can plan for it if they wish, with things like bequeathing possessions.) TEL can be used by disability staff, health professionals and family members, and with support, by people with intellectual disability.
TEL comprises 12 modules organised around 3 topics:
- How do I do this?
- Teaching how to understand end of life, and
- Teaching the planning options.
One of TEL’s strengths is its authenticity, with case studies about real-life experiences, and all videos featuring people with intellectual disability and caregivers. TEL is designed so that modules can be done on their own, or the whole 12 modules can be done in any order. Or, each module could be run as a group and facilitator guides are given to help.TEL is based on Australian and international research, and every module has links to high-quality resources and research. Some research, for example about guardianship, is based on Australian law so other jurisdictions may be different.
People with intellectual disability need lots of practice to learn while they are well and death is not imminent. So TEL includes a Handy Teaching Skills module that shows how to teach about the end of life – like using clear language, taking advantage of everyday situations to start a conversation, and teaching a little bit at a time.
People with disabilities are often excluded from loved ones’ funerals. Photos in this article courtesy of Talking End of Life: Introduction to the Online Toolkit.
Results: How TEL Has Helped
Since its launch in 2018, TEL has attracted widespread interest and uptake across the world. More than 70 educational events about TEL’s application have been held, reaching more than 2000 people from countries including the United States, United Kingdom, Canada, Taiwan and Australia.
People with intellectual disability have gone on to make decisions about bequeathing possessions, organ donation, and making preferences for their funerals. Professionals who have used TEL have reported more confidence talking about death. One professional said “I feel more confident in navigating this nuanced and important world for people with intellectual disability.” And some have even talked with their own families about things like wills and funeral wishes.
Other TEL project leaders are Professors Roger Stancliffe and Josephine Clayton from The University of Sydney, Gail Jeltes from Unisson Disability and Professor Jennifer Tieman from Flinders University and CareSearch. The project was funded by the Australian Government Department of Health under the Public Health and Chronic Disease Grant Program.
Videos: End-of-Life Planning
These videos offer examples of conversations about medical wishes, funeral planning, and person-centered strategies for end-of-life planning.
Forrester-Jones, R. (2013). The road barely taken: funerals, and people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 26(3), 243–256. https://doi.org/10.1111/jar.12022
Kirkendall, A., Linton, K., & Farris, S. (2016). Intellectual Disabilities and Decision Making at End of Life: A Literature Review. Journal of Applied Research in Intellectual Disabilities, 30(6), 982–994. https://doi.org/10.1111/jar.12270
McEvoy, J., Treacy, B., & Quigley, J. (2016). A matter of life and death: knowledge about the body and concept of death in adults with intellectual disabilities. Journal of Intellectual Disability Research, 61(1), 89–98. https://doi.org/10.1111/jir.12347
McMaugh, P. J., Wiese, M. Y., & Stancliffe, R. J. (2016). The experiences of parents in supporting their son or daughter with intellectual disability to learn about dying and death. Journal of Intellectual & Developmental Disability, 42(3), 285–294. https://doi.org/10.3109/13668250.2016.1236367
Stancliffe, R. J., Wiese, M. Y., Read, S., Jeltes, G., Barton, R., & Clayton, J. M. (2020). Does talking about end of life with adults with intellectual disability cause emotional discomfort or psychological harm? Journal of Applied Research in Intellectual Disabilities, 34(2), 659–669. https://doi.org/10.1111/jar.12835
Stancliffe, R. J., Wiese, M. Y., Read, S., Jeltes, G., & Clayton, J. M. (2016). Knowing, planning for and fearing death: Do adults with intellectual disability and disability staff differ? Research in Developmental Disabilities, 49–50, 47–59. https://doi.org/10.1016/j.ridd.2015.11.016
Wiese, M., Dew, A., Stancliffe, R. J., Howarth, G., & Balandin, S. (2012). ‘If and when?’: the beliefs and experiences of community living staff in supporting older people with intellectual disability to know about dying. Journal of Intellectual Disability Research, 57(10), 980–992. https://doi.org/10.1111/j.1365-2788.2012.01593.x