CareSearch Blog: Palliative Perspectives

The 2017 MOOC global contributions saw a definite desire from people to reclaim dying and death - to be more personally involved in processes which are the natural progressions in life. There was a great sense of 'community' in the need for more knowledge about death, about illness and preparing for death.

Personally for me it drove home the great yawning chasm of a need to educate our health care professionals - to cut out the 'doctor speak' and learn how to talk about dying and death with patients and family. We need trailblazing medicos, astute advanced care planners and guidelines as more and more people wish to be able to die at home. We need a powerful innovative palliative care structure to facilitate people's needs to ensure comfort and safety at end of life.
 

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.

 

Let’s be frank, end-of-life care can be tricky. Yes, dying is normal, but it hasn’t been a major focus in the acute hospital systems.  Health care professionals working in acute hospitals can find themselves challenged by patients with end-of-life care needs. Doctors, nurses and allied health professionals can be in a situation where they do not know how to best respond to a patient with end-of-life needs. Appropriate end-of-life interventions can be missed.

With 52% of Australians dying in acute hospitals, end-of-life care is essential knowledge for all health care professionals. 
 

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.