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The views and opinions expressed in our blog series are those of the authors and are not necessarily supported by CareSearch, Flinders University and/or the Australian Government Department of Health.
The CareSearch team hosted a MOOC on death and dying (Dying2Learn) in 2016 with over 1,000 participants from 18 countries. The aim of the MOOC was to explore community attitudes in relation to death as a normal part of life, and to open conversations around death and dying. In week one participants were asked to look at language, and to ‘think of alternative words (or euphemisms) that are used to describe death’. We were surprised when we saw 471 participants providing 3,053 alternative words and posting blogs about language.
There are few human experiences that are truly universal and death is one of these. As individuals and as societies, we form an understanding of what death and dying is. And these views can be different between people, groups and countries. Our perceptions and attitudes are shaped by many things - our exposure to death, the realities of what causes deaths, how death is represented in our cultural artefacts such as films, novels, social media and art work, and by our societal, religious and spiritual beliefs and systems. As a community, Australia is often characterised as death denying. Many of us have a limited exposure to the realities of death and the dying process and confidence in the health and medical systems to keep us well and healthy.
I’ve always been interested in how technology is evolving and how it is affecting our personal and our working worlds. Technology has changed and is continuing to change how we access information, how we communicate, what we create and what we leave behind. So preparing a module on digital dying for our MOOC, Dying2Learn, gave me a wonderful opportunity to explore a number of different aspects of death and dying that have been influenced or changed by digital technologies.
Some things are immediately obvious. Digital technologies have changed much of health and there are now amazing avenues for assessment, treatment and research that were not available a generation ago. If you are interested in the big picture approach to digital health, I’d suggest you take a look at Ste Davies’ presentation 10 digital health trends for the next 20 years or check out The Medical Futurist, who likes to pose grand challenges for the digital world and transforming health.
This is one of the questions that will be addressed in the Dying2Learn MOOC. As a palliative care doctor, it has been wonderful to have the opportunity to start this conversation, and I am looking forward to the interactions with real anticipation.
In developing this section of the MOOC I have tried hard not to assume too much about what participants should think or believe, or to push any particular perspective. Obviously that is a bit difficult for me, as my work for over a decade has been in the smoke and dust of the clinical battlefields where dying patients often end up i.e. acute hospitals. As palliative medicine clinicians we often feel like we are galloping in to rescue people from the hospital system, and (speaking for myself, anyhow) we can sometimes be a bit black and white about things. What I have learned though, over and over again, is that it is not simple for people. Many are unprepared for the decisions they will need to make, and - like BREXIT perhaps!- may not fully understand what they have let themselves in for until it is too late.
Module two takes us from ‘Engaging with Death and Dying’ in week one to ‘Representations of Death and Dying’. This includes an exploration of how death and dying are portrayed across a variety of medium such as art, literature, film and television and how their portrayal impacts on our day-to-day lives.
Initially we look at Death and Dying via Art and History. In history, we find instructions about death and dying dating as far back as the 15th century with the Ars Moriendi (Art of Dying). We also find other publications on death and dying in the 1600’s that were written with the aim of ensuring that if death occurred unexpectedly then you would always be prepared.