There is no denying that ‘end of life’ is difficult for people to talk about, so it stands to reason that it’s even harder to know the ‘right’ or best way to communicate or write about this particularly emotive topic.
For example, when we started this project, we called it ‘loss of a loved one’, but five months later we changed it to ‘end of life’. The reason? We were consistently pulled up by citizens, stakeholder agencies and service providers over the wording.
How do we start the conversation?
One of the ideas the ‘end of life’ team have been prototyping and testing, is for a centralised service (website) to act as a guide to help people navigate the ‘end of life’ journey. Possibly the most important part of the initial user testing of this service was around language and tone.
We tested words like ‘shock’, ‘unsure’ and ‘overwhelmed’ and found people did not respond well to them. They responded to language that was clear and empathetic without projecting a relationship or feeling on a person. People didn’t want to be told how they were feeling; they were looking for clear guidance on what to do and, more importantly, were looking to be empowered.
Context is key
Our testing found that people also have very strong feelings about the use of words like: deceased, body, cremation, burial, died, death. While it varied person to person, for the most part the use of the phrase ‘the body’ was not preferred, but it all came down to context and framing. The term ‘care of the body’ was seen as respectful by some but was not preferred by the majority of testers. What was almost universally preferred was ‘the person that has died’. This phrase was seen as the most respectful and the preferred way of framing references to a person that has died.
Language, loss, and loved ones
While some people responded to terms like ‘loved one’, others balked at this, calling it presumptive and inferring a relationship or projecting a feeling. It was really about an individual’s lived experience, and for this reason we landed on using ‘close to you’ – as in ‘someone close to you’. ‘Close to you’ doesn’t imply a relationship or feeling, but hints at proximity of a relationship, this may be particularly true for people who may have estranged or fraught familial relationships.
Placement matters
People don’t necessarily mind words like death, died or deceased, but it is all in the placement. When these words fall towards the end of a sentence, and not upfront, it is less jarring for people. Leading people to confronting words during a sentence is a much easier way of talking about death. When people are led to these words in a gentle way, they tend not to notice them. A jarring example of this may be: “Death is a confronting topic to talk about”. A less confronting way of saying this would be: “Talking about death can be confronting”; or “An example of a confronting topic would be talking about death”. Not leading with the word ‘death’ is the key in these examples.
Where do we go from here?
While the team still has a long way to go in this project, we will continue to adapt and learn from these insights as we go. To get involved or learn more about the ‘end of life’ project, please email lifejourneys@finance.nsw.gov.au