So let's consider how this inevitability is going to go down....
I don’t think I can say it any better than The Violet Initiative, (their most recent report Too little, too late) but I’ll have a crack.
We are living longer. More than half of us will die in an acute care environment. Diseases that used to shorten our life are now kept at bay with surgery, medication and therapies (Chemo, Radio and Hormone). While this is a good thing, it means we are postponing the inevitable and, as such, our deaths are not generally unexpected given our already extended life, no one lives forever.
We plan for most things in our lives; births, marriages, house purchases, holidays, we even pay insurance for things that MAY happen! Benjamin Franklin said there are two certainties in life - Death and taxes. We deal with the latter on an annual basis.
However, when it comes to our death we are not giving much thought to what happens when the body simply can’t go on anymore, or the mind has wandered. A letter in The Guardian “As doctors, we are failing to put our patients’ needs first, causing them harm at the end of life”, echoes Prof. Ken Hellman’s foreword of the “Too little, too late” report. “They (the aged) are subject to a conveyor belt from home to hospital, often ending on life support in an intensive care unit.”
We need to make decisions about our care – our health, our social needs as we age, what is important to us and how we want to manage our death.
Having been rolling through this end of life scenario for more years than I’d care for (and it’s not even my turn yet!), observing my parents go through the ageing process, lose independence, become isolated with diminished confidence, I want to see this done better. I don’t want to see out my days like that, and from my research it doesn’t seem like anyone does.
It's a bit confronting but the value of completing an Advanced Care Directive cannot be overstated. I have been through this process with both my parents, Dad’s was only a month prior to his death, while Mum’s has been updated maybe twice over the last 7 or so years. Completing this document when you are old and frail is not a very comforting experience, it's like they can hear the death knells ringing. However if we have a crack at this when we are spritely and death is still some way away it is certainly much easier to do.
It’s a simple document that investigates your beliefs and values, providing scenarios that you can nominate as “Bearable”, “Unbearable” or “Unsure”. And it’s ok to be unsure, especially if you have many years ahead. However, we all have circumstances that we would rather avoid, be it kept alive on a breathing machine for the remainder of our lives, or not being able to recognize our surroundings or the people we cherish and love.
An Advance Care Directive varies state to state. I implore you to take a look, see what it is about, discuss it with your nearest and dearest. If you feel you can complete it, give it to your partner, your GP and keep it on file somewhere. This document can be reviewed and updated as you progress through life, and it should be. Circumstances change, treatment evolves, and we are free to change our minds. This may be one of the greatest gifts you can provide your family. It is permission and advice to do what needs to be done if you are unable to advocate for yourself.
This is one of a handful of steps that we can take, to ensure our wishes are known and adhered to. As well as taking responsibility for our own end-of-life and we can avoid a conveyor belt of hospital trips, unnecessary treatments and trauma, both for ourselves and the people we love. Take the sad out of "Sadmin". If we complete these things while we are still able, it's not that sad. It's just admin. It will significantly help those you love when the time to say adios comes.
Adios - It's how you say goodbye!
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