Written by Prof Irene Tuffrey-Wijne, Project Lead, Kingston University.

Could you...?

Let me tell you the story of creating this picture for our FUNERAL PLANNING resource. What do you think of it?

(I’ll tell you later why this is a very serious question)

This will be part of the “Let’s Talk About My Funeral” picture set – 14 new pictures, commissioned from Books Beyond Words. It’s not quite ready, as we will be trialling these pictures in the autumn before they are finalised and made freely available. We will ask support workers to look at this picture with people with learning disabilities and talk about it together.

When you saw this picture, what was your first response? Were you:

(a) delighted because this picture of CREMATION is so clear and honest?

(b) somewhat shocked because this picture of CREMATION is so… well, so clear and honest?

In our All Together Group, the Monday team (nine people with a learning disability) went for (a) in a very convincing way. We showed them the 14 new pictures on a big screen and they were grinning. When it came to this CREMATION picture, the room erupted in claps and cheers. “Wow!” they said. “That is really, really good. That is amazing. Well done!”

It was the strongest, most positive reaction to any picture we looked at over the past six months.

Three days later, we showed the same 14 pictures to the Thursday team (families, support staff, service managers, professionals). It was on Zoom, but people’s microphones were on, so I could hear the positive responses. Until it came to this picture. There was an intake of several breaths. There was a short silence. Then there were questions. Could we really show this to people? Wasn’t it a bit too stark? Perhaps a picture of an urn might be better? Or perhaps we could add something like a curtain, or remove the black glove? Or make the flames a bit less realistic?

They were not alone. I have shown the picture to others, outside the All Together Group, and got a similar response.

So what is going on?

We looked at existing “accessible” end of life care plans, and this question is there, without fail, often right at the start:

Do you want to be buried or cremated?

It has been our job to assess if they are truly accessible, and if not, come up with something that works better. The delight of the Monday group was due to the new CREMATION picture being so well understood and therefore accessible. But it seems that many people struggle with this clarity.

Here is the story from the beginning. The CREMATION picture is the result of six months of co-production work by our All Together Group. None of the pictures we found in existing easy-read resources were well understood.

It seemed that most people understood the pictures only because they came alongside the word CREMATION, and they knew what a cremation was. Or so they thought.

When I gave the group a whole page of images, some taken from the internet, people were particularly interested in the photo of a coffin going into a cremator (oven).

Someone asked… “WHAT?? You still have to go in a coffin? I thought they just threw you on the fire. That’s what I want, because I’m claustrophobic and I don’t want to go in a coffin. That’s why I chose cremation.”

It led to a discussion about coffins, shrouds, how you can be buried without a coffin. Can you be cremated without a coffin? I don’t really know, so we’d have to find out.

All of this led me to think: If we ask people to chose whether they want to be buried or cremated, shouldn’t we help them understand what that actually means? If we are not prepared to do that, we really shouldn’t be asking the question at all.

The group wanted a better picture, one that everyone could understand. So we asked them:

Could YOU draw a picture of a cremation?

People set to the task with gusto. Some drew their own picture; others directed a supporter, telling them what they should draw. Most pictures involved a coffin and flames.

That’s when we gave Books Beyond Words very specific instructions. Their wonderful artist Beth Webb (who drew the pictures for their very first books, When Dad died and When Mum died) asked staff at a crematorium if she could come and see what a cremation actually looks like in real life. We asked for a bit of artistic license, because in real life, the flames don’t erupt until after the coffin has gone into the cremator (the internet photo is more realistic), but people needed the flames to help them understand it. Several sketches later, we had the picture that elicited (a) cheers and (b) gasps.

We are also working with Grace Barnes, a graduate from Kingston University School of Art. She is producing a set of clear and simple picture cards that will hopefully help people think about (and record) different choices and situations. We sent her the group’s sketches. “Draw us a coffin in flames please,” we said, “something like this.”

Here is her picture card, very hot off the press, ready for trialling.

For people with a learning disability, it seems that the clarity of the cremation picture helped with several things. It helped them to understand the “burial or cremation” choice and talk about it. But it also helped them to be clear when they did NOT want to think or talk about it. Pictures of urns or cremation buildings, or just reading or hearing the word CREMATION, took a bit longer for people to get their head around and give their opinion about.

A picture of a coffin in flames was clear. We introduced a “bin” option (putting a box or bin on the table where people could put anything they didn’t want to choose, think or talk about), and one person used it consistently. For another person, who had a close family bereavement during the project, some of the pictures became too close to home, so they left the room. Both these clear and positive statements of “no” were helpful, empowering, and applauded by the whole group. It enabled us to support these group members, understand their perspectives, and move on.

Isn’t such empowerment the whole point of involving people in end of life care planning?

But I also learnt something else, equally important. I learnt how difficult it is for staff and families to look the issue of death squarely in the face. A spade is a spade; a flame is a flame (not a vase). The Monday group had a huge advantage over the Thursday group: They had been looking at lots of cremation pictures, tried their own hand at picture design, watched and tried various ways of answering the question “Do you want to be cremated?” Perhaps it was no wonder that they cheered at Beth’s picture. They’d had much more time.

Once the Thursday group (the families and support staff) had taken a deep breath, thought about it and talked about it, they too could see the importance and value of the picture. At the end of the summer, we’ll tell you how YOU can get involved in testing these pictures. One of our TOP TIPS comes straight from our Thursday group, and led to my first question in this blog:

Take a deep breath. Look at each picture first. What do YOU think of it? Are you happy to talk about it? Explore the questions? Confront realities? Sit with people’s questions, thoughts, ideas, stories, tears? Perhaps with your own tears?

It’s important to be honest about this. We shouldn’t do it if we are not prepared ourselves. Because as it turns out, involving people with learning disabilities in end of life care planning includes involving yourself.

Not easy… but listen to what the Monday group has to say to you!