How to talk about death and dying

January 06, 2021

Our reluctance to think, talk or communicate about death is even more pronounced when we deal with others' loss compared to our own, new research finds, but either way we tend to frame attitudes and emotions in a sad and negative way.

Teaching new more positive ways to address these difficult conversations is the focus of a new paper in PLOS ONE journal by palliative care specialists across Australia. Led by Flinders University's Research Centre for Palliative Care, Death and Dying (RePaDD) and Palliative and Supportive Services, researchers from Flinders, CQUniversity Australia, NT Palliative Care Central Australia and University of Technology Sydney, surveyed 1,491 people about the use of language to express their feelings and insights into death and dying.

Those surveyed were enrolled in Dying2Learn, a six-week MOOC (massive open online course) course developed at Flinders University to encourage open conversation about death and dying.

Analysis of the emotional content of the words used by the group showed that by the end of the course participants were able to use "more pleasant, calmer and dominating (in-control) words to express their feelings about death", researchers conclude in PLOS ONE.

"In an ageing population, when our elders and terminally ill are often cared for by health professionals in residential care rather than in the home, we can go through life without really discussing or witnessing the end of life," says lead author Dr Lauren Miller-Lewis, Flinders University research associate and CQUniversity positive psychology lecturer.

"Tackling and changing these perspectives will help the community to plan for and manage future needs and expectations of care at end-of-life, improve patient and family care - including greater preparedness for death - and also help develop future health services.

"Words aren't neutral, so understanding the emotional connotations tied to words we use could help guide palliative care conversations," Dr Miller-Lewis says.

Dying2Learn was an innovative online course developed as part of the CareSearch project, with funding from the Australian Government. The course ran four times in 2016, 2017, 2018 and 2020.

A new interactive online resource will be released on the CareSearch website in mid-2021 using insights, feedback and suggestions from the Dying2Learn program to "help all of us be able to start and respond to conversations about death and dying with our family, our neighbours, and work colleagues" (see the webpage here).

Flinders Professor Jennifer Tieman, RePaDD Centre Director and Dying2Learn lead investigator, says the new web content will further assist community to help them feel more comfortable thinking about - and talking about - death and dying as a part of life.

Professor Tieman says further studies using sentiment analysis could provide valuable insights into the way people feel about this issue, and other topics including palliative care, advance care planning, voluntary assisted dying and COVID-19.

Co-author Flinders University Computer Scientist Dr Trent Lewis says automated sentiment or emotional analysis of the words used showed a greater benefit for younger participants of the course who showed a bigger increase in pleasantness (valence) and dominance (power or control) by the end of the course, showing the benefit of gaining insights into becoming more emotionally accepting of death.

"It shows how the general public can gain an acceptance of death as a natural part of life by learning how to openly discuss and address these feelings and attitudes," he says.

The study also found differences between how course participants described the feelings towards death and dying of other people in the community compared to their own - with 'sad', 'fear', 'scary' and 'loss' more common than their own preference for less emotionally negative words such as 'inevitable', 'peace' and 'natural'.

"The assumption was that others feel more negatively about death then they do themselves," Dr Lewis says.

"This could impact on our willingness to start conversations about death with others," adds Dr 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?" she asks.
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The new paper, 'Words describing feelings about death: A comparison of sentiment for self and others and changes over time' (2021) by LR Miller-Lewis, TW Lewis, J Tieman, D Rawlings, D Parker and CR Sanderson has been published in PLOS ONE DOI: tba

Acknowledgement: This work is part of the CareSearch project, which received grant funding from the Australian Government Department of Health.

Flinders University

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