Reflecting on Dying2Learn
An article written by Professor Jennifer Tieman
There are many paradoxes around care at the end of life and the perceptions and experiences of death and dying. As a population we are now living longer than ever before and with greater access to information than we have ever had but we are still surprised by death. We say we want to die at home but, in reality, most of us will die in hospital. Family, culture, community, health and social care systems, changing social structures, an increasingly digital world and our own life experience can all shape our views and attitudes to death and dying.
Dying2Learn, a massive open online course (MOOC) provided a unique and rich mechanism to explore some of these paradoxes in a conversation with the Australian community during the four times the MOOC was run. Nearly 6,000 people enrolled in the courses and contributed to the conversation.
The opportunity to present on the Dying2Learn program at the 2023 Oceanic Palliative Care Conference has prompted reflection on the reason why the course was planned and the process for developing it. So, was Dying2Learn important and if so, why? One of the reasons why the MOOC could be seen as valuable is that it explored the role of a digital technology in supporting conversation. We saw that people were willing to get online, even those who were not familiar with online learning and the use of digital platforms. Age was not a barrier. The oldest participant was 92 years. More importantly, the participants were engaged and interactive, supporting each other while raising questions and seeking further information, speaking to the quality of the digital interactions.
Each time we ran the course, we needed to consider the current context. During the four courses, we had to address real world issues including the passing of VAD legislation, the surge in sadness and anger as Black Death Matters highlighted injustice, and COVID-19, lockdowns, and funeral restrictions. While this required us to consider the impacts on individuals in the course, it also offered an opportunity to listen to the voices and attitudes of Australians on these contemporary issues.
The strong interest in the course from health professionals and from the aged care workforce had us scratching our heads as we were clearly marketing the course as being for the general public and not palliative care education. However, the nature of the discussions showed that there is a need to be able to talk about death and dying not only as a health professional but as a human who happens to be a health professional.
Setting up the MOOC with a clear intent to collect data established a framework that spoke to activity, engagement, evaluation, behavioural intentions, and theory development. It demonstrated how incidental and purposeful data collection can be powerful in identifying and explaining issues. This gave a value to analysis that partly compensated for the work and pain associated with defining study designs, developing the ethics, and managing data collection and analysis processes. Given the richness of the datasets, it was also possible to challenge ourselves to undertake new types of analysis such as sentiment analysis. Basic follow up surveys showed how participants had moved what they had learned and shared within the MOOC outside of that environment into their real world.
Dying2Learn has reminded us that it is possible to be adventurous and experimental and to consider different perspectives that can shape how individuals and societies see death and dying. This in turn can inform us how we can better design and deliver services and care at the end of life. However, the final legacy is the voice of the participants. They showed that not only were they willing to talk but that they had a lot to say. Beyond that the willingness to talk about death and dying, it was the nature of the discussion and the interactions of participants not only with the content but with each other that was remarkable.
Acknowledgement
The CareSearch Project developed Dying2Learn. CareSearch is funded by the Department of Health and Aged Care.
Author
Professor Jennifer Tieman BSc(Hons) MBA PhD FAICH
Matthew Flinders Professor
Director, Research Centre for Palliative Care, Death and Dying (RePaDD)