Advance care planning is such a necessary thing. It enables us to think about and share what we would want when we come to the end of our life and what is important to an individual in terms of their preferences for care. This seems simple but is framed within our personal, familial, cultural, and societal systems.
A qualitative analysis of published literature identified five important goals associated with advance care planning:
- respecting individual patient autonomy,
- improving quality of care,
- strengthening relationships,
- preparing for end of life, and
- reducing overtreatment.
But underlying all these goals is the need for people to be willing and able to have a conversation that is appropriate for them. So, it is important that we understand community attitudes and perceptions around palliative care, death and dying if we are to effectively communicate and share knowledge and encourage engagement in decision making and planning.
But how do you talk to the Australian community about their views on death and dying. As part of the CareSearch Project, five facilitators* designed and ran an online course called Dying2Learn in 2016, 2017, 2018, and 2020. We ran the course as a MOOC, or massive open online course. MOOCs are free web-based distance learning program that can enable participation by large numbers of geographically dispersed students. Over 6,000 people participated in the four courses, and they had a lot to say about how we engage with death and dying, how we talk about and represent death and dying in movies, art and books, the role of medicine in dying and how the internet is changing mourning and sharing.
As part of the 2016 and 2017 course, we were able to ask people what three words they would use to describe how they feel about death and dying and what three words they think best describe how others in the community feel about death and dying. The results told us that our feelings about death and dying were inevitable, sad, peace and natural. However, words chosen to represent perceptions of others’ feelings towards death were much more negative including fear, sad, scary, and loss. We would have expected people willing to be involved in a course on death and dying to have open attitudes to death and dying but we were surprised at how different their perceptions of other people’s views were. Given these perceptions, does this mean we may be less willing to start conversations because we think others may be distressed if we talk about death?
In the 2018 course, we asked participants for three words about four topics – death and dying, palliative care, advance care planning and voluntary assisted dying. Commonly used words by MOOC participants to describe feelings about palliative care were “comfort” and “caring”; for ACP they were “important” and “necessary”; and for VAD they were “choice” and “dignity”. Variations in core words suggest different understandings of the value of each concept.
So, what does all this mean when we think about advance care planning? Firstly, the Dying2Learn approach shows us that we can learn a lot by talking with and listening to the community. Participants articulated differences in the role and value of different elements such as advance care planning and palliative care through their choice of words to describe them. Understanding these responses can help us more effectively message and communicate. The positive words associated with advance care planning “Necessary- important- sensible- plan- prepare- essential” indicate its importance to the community. Finally, while 2020 was the last Dying2Learn MOOC, we wanted to continue the conversation with Australia by creating a Dying2Learn section in CareSearch.
*The five facilitators for Dying2Learn were Professor Jennifer Tieman, Deb Rawlings, Dr Lauren Miller-Lewis, Professor Deborah Parker, and Dr Christine Sanderson.
- Fleuren N, Depla MFIA, Janssen DJA, et al. Underlying goals of advance care planning (ACP): a qualitative analysis of the literature. BMC Palliat Care 19, 27 (2020). https://doi.org/10.1186/s12904-020-0535-1
- Miller-Lewis LR, Lewis TW, Tieman J, Rawlings D, Parker D, Sanderson CR (2021) Words describing feelings about death: A comparison of sentiment for self and others and changes over time. PLoS ONE 16(1): e0242848. https://doi.org/10.1371/journal.pone.0242848