Reclaiming Dying and Death

A blog post written by Robyn J.Youlten, Palliative Care and Bereavement Support Volunteer, Olivia Newton-John Cancer, Wellness and Research Centre, Heidelberg, Victoria, Australia

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 MOOC explored historic pathways through art, literature, film -  representations of death and how people 'did death' in bygone days, how this embraced a culture of family, community and seeing death as something to be shared – a hands on approach ritual. Now those 'hands' are typically those of strangers - I don't want that for me. Information I gleaned from the MOOC tells me it needn't be so. Along with the majority of ‘MOOCers’ the wish to die at home with good palliative care surrounded by loved ones is back! People want to reclaim death and the dying process. Hospitals 'mend' people, send them home. Somewhere along the way the hospitals and funeral industry 'stole' our deathly needs from us. I see the need to address anticipatory grief and to lift the shrouds of what I call the "Shhhh!" factor when we speak of dying and death!

I also realised that the seemingly incessant striving for immortality is ironically alive and well! This juxtaposition between wanting to bring death back home but trying to dodge it - even in the language we use to describe it was interesting. The 'future' for dying and death and any possibility we have of once again embracing the natural course of life lies very much in the development and implementation of palliative care - humans fear the unknown. We need to be equipped with some safety gear and reassurances with good pain management and palliative nursing where needed.

Drawing from the experiences of other MOOCers it became clear that we all shared common ground - dying at home, with loved ones present, pain free and we all had little idiosyncratic wants - we wanted to be told the truth about our illness. I came away with a resolve that I wanted people to cry with me, be grumpy with me laugh listen to me and talk to me - even if my eyes are shut! I want that palliative care team to be omnipresent! I don't want people creeping around my room. I'm a long time dead, so if I am dozing, wake me up and let me soak up every minute of life because I want to live until I die. I will still have a story to tell.
I won’t be sleeping when I am dying. I want to know everything.

The MOOC was an absolute treasure trove, rich with jewels of information, innovative ideas and a welcome relief because the MOOCers were there talking about dying and death in down to earth language. We need to change the language surrounding dying and death. We need to re-learn how to say 'die’, ‘dying’, ‘dead’, ‘died’, ‘death'.

In the future palliative care should be and is going to be one of the most precious and valuable assets we have - clearly almost everyone in the MOOC felt the need to incorporate it even long before someone is restricted to their bed. Through palliative care we can enrich our living days and bring comfort and ease to our dying and death.

We need to bring life back to dying and breathe life back into death! We need to demystify it, talk about it, ask questions, explore it, and reclaim it! I have been able to take with me so many valuable ideas and insights from the MOOC and utilise them in my role as a volunteer at the cancer centre where I work. People are so happy to either engage in or listen to some conversation - one woman said to me – “Thank God you're not treating me like I'm already dead!"
The majority of us will get to 'do' death once. Let's get it right!!
 
Last thoughts -

Participating in the MOOC was uplifting and inspiring as I shared the stories from others who had experienced dying and death. I also highlighted - at times - the human need for religion and other forms of solace and spiritual guidance and/or ritual and/or adhering to customs and time honoured beliefs. Pets play a vital role in people's lives and I read often that people felt guilty for feeling so deeply about the death of a pet. The need to 'leave something' for children and grandchildren was a big issue and I think just about everyone wanted to die in their sleep!
The MOOC left me contemplating how I personally REALLY felt about many issues - I did a lot of reflecting and musing.
The more we talk about something we fear the less we fear it - we need to keep conversations going.



Robyn J.Youlten, Palliative Care and Bereavement Support Volunteer, Olivia Newton-John Cancer, Wellness and Research Centre, Heidelberg, Victoria, Australia