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David Pearce 23 February 2023

Audience research: Death, dying and advance care planning

What our new brand taught us about language.
Advance care planning Our thoughts Working in the open

At Compassion in Dying we’ve long been fascinated by how the language we choose to use can influence people’s perception of death and dying. So when we conducted audience research to inform the launch of our new brand, we saw an opportunity to explore the public’s views of the language around death, dying and advance care planning.

We are born, we live and then we all die. We need to normalise it

Looking at our brand through the eyes of the people we support has hugely impacted the language we use. We discovered that some language choices can reinforce unhelpful myths about the end of life and create barriers to accessing services. Whereas other language can help establish the benefits of advance care planning (although we found people prefer the phrase, ‘recording your wishes’) and help us move away from the notion of death being a ‘taboo’. In fact we found that many people want to move on from the language of taboo and shape a new, more open discussion about death and dying.


We used a mix of qualitative and quantitative methods to gain valuable insight and a robust set of data. This included depth interviews, focus groups, and surveys. We included professionals working around the end of life and in primary care, and two key lay audiences:

What We learnt

‘Good death’ must be explained for it to be motivating

Those who work in palliative care and end-of-life policy have put a lot of thought into what makes a good death. It is at the heart of what the hospice movement aims to achieve, and it consists of different things for different people. What a ‘good death’ looks like for each individual can form the basis of important conversations with them about end-of-life planning. So we wanted to talk about it with the public to see how they reacted to the phrase.

What people told us when we used the phrase ‘good death’, was that it is an oxymoron. But crucially, ‘good death’ IS engaging IF it is followed by an explanation. Like this:

A good life should include a good death. In a place you choose, with the people who matter. Having the care and treatments you want, and not the ones you don’t.

When presented with this context, ‘good death’ was cited by our audiences as motivating language.

People want to move away from euphemism and the language of taboo

“I hate it when people say we lost her – no you haven’t. She died.”

“Euphemisms can be frustrating for patients as it feels as though their situation hasn’t been acknowledged. It can be isolating.”

“It should be embraced…. and I think a language needs to be learnt about how to talk about end-of-life care.”

The people we spoke to welcomed a more vocal, pioneering approach to death. They want something that counteracts the silence and the taboo surrounding dying, which they see as negative.

Focusing on the benefits of recording your wishes can overcome the barriers to doing it

Our research with potential service users identified a number of barriers and benefits to someone beginning the process of making an advance decision (living will). In particular, the primary barrier most people identified was that the process sounds fixed, and they might change their mind in future. As with several of the barriers identified below, this reflects an incorrect assumption. We can tackle this, in part, with the language we use. Our new brand will stress that recording your wishes is not fixed, you can change it to suit you. Like this:

You can record and revisit your wishes whenever you want, for free

The barriers our research identified to people recording their wishes
The benefits our research identified for people recording their wishes

The most significant of these motivators to complete an advance decision was family. People often expressed it like this:

“Making things easier for family members was my main motivation and I feel it will be for many.”

So we are reflecting this in the copy we use. Like this:

Planning can make things easier for family and loved ones. If you wait until it’s too late, medical professionals may make important decisions without knowing what matters to you

A behaviour change model

When we looked at how people felt and what they went on to do, we realised a person’s journey to recording their wishes can be shown on a behaviour change model.

Our findings in a behaviour change model

One finding we were particularly interested in was the advocacy phase – even though we had not asked them to, many people who had recorded their wishes in an advance decision then went on to tell others and advocate for them to do the same. We observed:

Another finding that has stuck in my mind, is the potential to engage new people in recording their wishes for the end of life. So while the majority haven’t started an advance decision, crucially, most are in the contemplation phase – there’s a clear openness to it in the future.

People who had not used our services on our behaviour change model

What next?

This is just the beginning, we have a very full ‘car park’ of ideas that were not fully developed for the launch of our new brand but that we know we want to return to. Some of these I’m most excited about include:

Credit: My thanks to Abi Markey from Supernova for leading our audience research.

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