Welcome to another edition of ‘The Docked Leaf‘ where we look at podcasts, books, all kinds of media that cover the subjects of death, dying and end of life. Today, we’re focusing on the inaugural podcast episode from the PCPLD Network that talks about just that; the language that we use when it comes to death, particularly in the context of those with learning disabilities.
People Like Some Words Better Than Others
I’m right at the beginning of my journey as an End of Life Planning Coach and something I’ve found really interesting is the language other people use around this topic and what they’re comfortable with.
Specifically, I have been talking to people about the very phrase ‘End of Life Planning’ and how comfortable they are with it. And really it’s 50/50.
Half the people I speak to find that the term ‘End of Life Planning’ resonates with them, connects with them, and they are relatively comfortable with it.
The other half find it a little too confronting and they find it negative and borderline morbid. So I found myself contemplating whether to even continue to use the phrase ‘End of Life Planning’.
Pushing Up The Daisies
Whilst I was having these conversations, I happened to stumble across the podcast ‘Pushing Up The Daisies: the words we use to talk about death’.
As mentioned, it’s the first podcast episode released by the PCPLD Network. Or, to give it its proper name, the Palliative Care for People with Learning Disabilities Network.
I really recommend that you go and check it out and listen to it. It’s less than twenty minutes long and it is really worth your time.
If you have any form of interest in the topic around death, dying, end of life matters and the language we use for these topics in our society, then you absolutely, definitely, need to go and check it out.
The podcast is hosted by one of the trustees of the PCPLD network, Dr Irene Tuffney-Wijne, in conversation with the Chair.
They also include snippets from a discussion held on Zoom with four people, all of whom have learning disabilities. They talk about death and dying, and the language we should be using to make this topic clear and understandable.
The Problem With Euphemisms
The general focus of the discussion is on how society tends to favour euphemisms. We don’t like to use the words ‘death’, ‘dying’, ‘died’; many are uncomfortable with doing so. Instead, we’ll often use phrases such as ‘pushing up the daisies’, or ‘they popped their clogs’.
And the focus of the podcast is on how unhelpful this language is, especially for people with learning disabilities, because we don’t know that what we say is being understood by the other person.
And that’s true for almost any situation. Very often we will use language on any given subject thinking that we’re being crystal clear in what we’re saying and that there’s no room for misinterpretation.
However, that only works if the person we are talking to has the same definition for those words as we do. And for many people with learning disabilities, they may not have heard of the euphemisms we use, especially around death.
And therefore, it can be very confusing for them and in some cases, really quite scary.
They give an example where somebody has died but the person is told that they have ‘gone to sleep’.
For that person, this was terrifying – they didn’t want to go to sleep because they didn’t know if they were going to wake up again.
The ‘D’ Word
At one point in the podcast, the people on Zoom are asked for their opinion on what kind of language they would like to use, and have used by others, when talking about death. And the message comes through that for people with learning disabilities, they would like language that is clear and simple and that cannot be misinterpreted.
My favourite line in the whole thing is when Irene is recounting a hypothetical conversation with somebody and she’s asking them, ‘What’s the best word to use for dead?’ And the response she always receives is ‘Well my suggestion is dead’.
Which makes me wonder; why don’t we use the words that are clear, have one meaning, and that cannot be misinterpreted? What is it about the words, ‘dead’, ‘dying’, ‘died’, that make us so uncomfortable, that we consistently reach for metaphors and analogies instead?
I took a couple of things away from the podcast. Firstly, the evergreen reminder that the words I say, may not be the words you hear. Words can be (mis)interpreted and can have different meanings for different people.
Also, if you use euphemisms and you don’t quite say what you really mean… you’re asking a lot of the other person to correctly interpret that for you. And that isn’t always helpful or appropriate.
Or indeed, in the case of people with learning disabilities, it’s actually unhelpful. At the end of the podcast, the Zoom participants are asked how they think we (society) should approach this?
Their response is immediate; ‘Be kind. Be tactful. Be sensitive. But tell the truth. Be honest’. I thought that was a wonderful takeaway and applies to every single one of us.
We should always, always try to speak with kindness and compassion, especially around death. But we must always be honest about it.
When someone dies, they’re not coming back. We’re not going to be able to speak to them again face to face. And part of the grieving process starts with acknowledging that fact.
It isn’t easy. At all. But the response warrants reiteration; be kind, be tactful, but please be honest.
I called my business ‘Dockleaf Conversations’ because we need to have a conversation about death and we need that conversation to become normalised.
To go full circle and end this post where it started, I found myself recently having to make a decision; ‘Am I going to continue to use the term/phrase, ‘End of Life Planning’?
Or should I soften it and change it to something that may sit more comfortably for many people? You’ve probably already guessed, but I decided that I’m going to stick with ‘End of Life Planning’.
And the reason for that is because if we are to normalise this conversation; to make it okay and socially acceptable; to talk about death and dying, then we have to be able to use those ‘D’ words.
And End of Life Planning is part of that. It’s not about sugar-coating it and say these things don’t happen. Or that by changing our language it somehow makes it more palatable.
For me, it’s about calling it what it is and then finding ways to be more comfortable with that reality. So, go and check out this podcast.
Depending on how comfortable you are with the ‘D’ words will depend on how comfortable you find listening to it. I’m going to give it a two ‘Docked Leaf’ rating because it can be a little ‘stingy’.
But then, that’s the whole point of it. It’s about the language we use to talk about death. And using the ‘D’ words is a really, really good place to start.
Until next time, take care.