As part of the process to obtain my recognition as a 'Fellow of Thanatology' in the USA, I had to discuss at length the issue surrounding End OF Life decisions and challenges. Such areas as the ethical and legal impacts, social, cultural and religious implications, life span and assisted death debates and so much more. This theory is essential for us in the Thanatology world, but what happens when the learning goes from a text book to a family meeting room in a hospital?
The past week has seen me sit with my family as doctors walked us through the potential difficult journey ahead of us and the end of life decisions they require from us (to be made on the spot) as my dad lies gravely ill in a hospital bed.
“Advance care planning provides family members and health care professionals with a person’s treatment preferences prior to incapacitation through the living will, written specification regarding administration of life support due to terminal illness, and durable power of attorney, giving another person legal authority to make one’s medical decisions whenever he/she is unable to do so.”
Years ago, death used to take place in the family home with the ill being surrounded by those they loved – while in today’s society statistics say that 50% to 75% of people are dying in institutions; surrounded by health care workers. Staggeringly, however (and in stark contrast to the above), it is suggested that 70% of people in Australia would actually prefer to die at home. So why is there such as chasm between an individual’s wishes and the practical realities of their passing? Perhaps one obvious opinion for this is simply a lack of conversation? Or one’s personal wishes compared to their loved ones? Religion? The sudden nature of a death?
“Research supports the fact that religion and spirituality can assist persons in their sense of meaning in the illness… life threatening illness strikes at the totality of the person - not just his or her physical well-being but also his or her psyche, social relationships, and spirituality. Even with death, there is some evidence that religious and spiritual beliefs may minimise fear and uncertainty.”
To sit and discuss an effective end-of-life care for my dad this week was extremely confronting but in many ways, comforting.
With the skillful communication to my family by a kind and caring doctor about realistic goals of care, we felt both overwhelmed but safe. The doctors (and nurses throughout the days) took the time to ensure they understood my dad’s (and family’s) concerns and documented our wishes.
The reality is that we want everything humanly possible to be done to keep my dad alive and in his best health – however, the other reality is that that may look very different to how we envisage it to look. And the challenge is that by making one decision it eliminates another.
Do they resuscitate? Do they do CPR? Do they use incubation?
What level of drugs? Where does he receive treatment? Who is there? Who does what? What if everything we plan for doesn’t work out anyway? And on and on the questions come. All of which require thoughtful, family inclusive answers!
My experience is telling me to have the tough talks now because potentially it will only get harder as we go along.
I have said it many times over many blogs, that having important discussions (especially the really difficult ones) earlier rather than later, can really help avoid a lot of intense pain in high emotional moments. Are there any discussions you need to have with your loved ones now, rather than later?
Two days ago my dad rallied again and sat up in a chair and discussed at length the mighty Geelong Cats Football team, my day, future plans and my family. He was as sharp as a tack and looking forward to getting better and going home!
Yesterday he had no idea about anything.
Today… well, it’s another day and I am off to sit with my dad and enjoy his company, albeit different to how I would like it.
By Steve Morrison
 Meagher, D. K., & David E Balk. (2013). Handbook of Thanatology: The Essential Body of Knowledge for the Study of Death, Dying, and Bereavement (2 edition). Routledge. Page 57
Ibid, page 211.