To encourage open conversation about the inevitable end of life, palliative care experts across Australia devised an online course to teach people more positive ways to talk about it, publishing their evaluation in the journal PLOS ONE.
According to Lauren Miller-Lewis, a lecturer in positive psychology at Flinders University, and colleagues, this is increasingly important as the population ages. “Thus, planning for how we live and provide care at the end-of-life is becoming a major public health issue,” they write.
“Understanding contemporary community attitudes and feelings towards death is valuable because it may inform the development of future health services, improve patient and family care at the end-of-life, and it may also inform policy on ways to encourage conversations leading to greater death preparedness and planning.”
Language plays a major role in conversations about death and dying, they note, because it reflects people’s attitudes and feelings and may help facilitate change.
Their six-week course gives people a chance to look at death through the language we use, humour and mourning practices and how death is portrayed in art, literature and the media.
It also explores the role of medicine and how the internet is shaping our perceptions of death – a topic that more people are starting to engage with.
“The idea arose from a growing interest in death cafés, death literacy and public health approaches,” says co-author Jennifer Tieman, also from Flinders and the inaugural director of the university’s research centre in palliative care, death and dying.
“Dying2Learn”, with the key message “Death is part of life. Let’s talk about it” was developed as part of a CareSearch project and has been run four times. The present analysis includes nearly 1500 adults aged 18 to 84 who took part in 2016 and 2017.
At the start, participants were asked to list three words that best describe how they feel about death and dying, and three words that best describe how they thought others feel about it. At the end, they were again asked how they feel.
Linguistic sentiment analysis showed that the words people used to describe their own feelings about death at the beginning of the course were permeated by sadness, and also included inevitability, peace and fear.
Interestingly, participants thought other people perceived death more negatively than they themselves did, more often choosing words such as sad, fear, scary and loss.
“This could impact on our willingness to start conversations about death with others,” says Miller-Lewis. “Do we avoid it because we think others will get upset if we bring it up, and does this then leave important things unsaid?”
By the end of the course, participants chose words that were more positive and calmer, and that reflected feelings of being in control. The change was most notable for young people, who chose more words reflective of pleasantness and being in control by the course’s end.
Overall, spending a few weeks focussed on death and dying does not seem to be something to shy away from.
It didn’t impact people’s emotions negatively, the authors note, suggesting in fact that it may have assisted them to be “more emotionally accepting in their feelings and attitude towards death”.
Natalie Parletta is a freelance science writer based in Adelaide and an adjunct senior research fellow with the University of South Australia.
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