What Is a Will? Explaining End-of-Life Planning to People with IDD
We tend to leave people with disabilities out of end-of-life conversations. The research shows that we are doing this to avoid challenging behaviors that may come up, and we are doing it to avoid our own discomfort with the topic. Both of those are very valid reasons! However, the research also shows that having conversations around these topics is one way (an antecedent intervention) to relieve anxiety around death. This doesn’t mean the person won’t experience anxiety around death (nor do we want it to), but it can make those feelings a bit easier to navigate.
This connects to something bigger. In the western world we tend to avoid death. This means that we often shy away from conversation around death (ours or someone else’s) and we tend to refrain from using words “death, dead, dying”. Avoidance can be a way to create distance from things that are difficult to think about. However, avoiding these topics of conversation actually increases anxiety around death and dying.
I recently saw how this avoidance, and the anxiety underneath it, can show up in the people we support. I was working with a client who experienced a lot of anxiety when his grandparents talked about their will. He heard the word will and knew that it had something to do with his grandparents dying. Whenever they brought up the word “will” he got visibly upset. I sometimes worry that from a behavioral perspective, we see these challenging behaviors and immediately think we need to “extinguish” them instead of realizing why they are happening. Challenging behaviors were happening because my client was concerned about his grandparents dying. So instead of trying to make the behavior go away, I focused on answering his questions and providing reassurance.
The first thing I did was ask my client what he already knew about a “will”. He actually didn’t know much, but he knew it was associated with death. So he assumed that them writing their will was actually bringing them closer to death. I explained that writing a will does not change when someone is going to die, it is something that people do to prepare for their death. Thus, writing a will is actually a very normal thing to do. Normalizing this concept was the first step in helping relieve some anxiety.
When you explain a will to someone with a disability, a few things help. Start by defining what a will actually is, in plain and simple terms. Then explain what it does. From there, normalize it: writing a will is something many grown-ups do, and it is a normal part of planning ahead. Finally, normalize the feelings that might come up. It is okay to feel sad, worried, or confused, and it is okay to ask questions.
It is also worth remembering that this kind of resource is meant to be repeated. This is not a one-and-done book. We read it as often as needed, and each time can build a little more understanding. This is especially true with end-of-life planning, where there are stages all along the way that we are preparing for. A book like this can be returned to again and again as a person’s understanding grows and as their situation changes.
I have written a book to help explain what a will is to individuals with intellectual disabilities and autism, specifically for when someone in their life (like a parent or grandparent) is making a will. It is designed for those who require plain/simple language, repetition and visual concepts. You can find it here: https://www.teacherspayteachers.com/Product/What-is-a-Will-Easy-to-read-narratives-about-End-of-Life-Planning-17522088
References:
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(1), 1–11. https://doi.org/10.1111/jar.12835
Tuffrey-Wijne, I., Finlayson, J., Bernal, J., Taggart, L., Lam, C. K. K., & Todd, S. (2020). Communicating about death and dying with adults with intellectual disabilities who are terminally ill or bereaved: A UK-wide survey of intellectual disability support staff. Journal of Applied Research in Intellectual Disabilities, 33(5), 927–938. https://doi.org/10.1111/jar.12714