Dad’s wishes for end of life care.

Dad didn’t have an Advance Care Planning document.
He did have an Enduring Power of Attorney document though, appointing Mum and my sister and I as his substitute health attorneys.
And he had discussed with us what he thought was a good quality of life and under what circumstances he didn’t want to cling to a life that was not consistent with his values.

During the couple of weeks that Dad was in hospital in July 2017, after the 3rd stroke he conveyed to us that his situation was not what he wanted, that he didn’t want to live a life that was dependent on others to do everything for him.
This was consistent with the kind of man my Dad was. 
Fiercely independent, capable and proud.
That was my Dad. Or, it used to be before the big stroke.
The man who was lying in the hospital bed, struggling to talk, unable to swallow, incontinent and at the mercy of nurses to get him in and out of bed, to walk him and to shower him, well, that wasn’t my Dad.

Dad didn’t want this life.

One morning when Dad was in hospital, I was feeding him his breakfast.
He held up his hand and waved me away, indicating to me to stop feeding him.
He said “enough”.
I replied “have you had enough Dad? Are you full? Don’t you want any more breakfast?”
And he replied “enough. I’ve had enough love, it’s not much of a life is it?”

I think time stood still for a moment when Dad said that.
I understood what Dad was saying and the effort that had gone into verbalising that sentence.
My heart ached for him.

Other times, while we were visiting Dad and we asked how he was or how his day was going he didn’t say anything. He either couldn’t or wouldn’t.
But his eyes conveyed everything.
And his response was often a simple gesture of drawing his finger across his throat.

Advocating as Dad’s substitute decision makers.

So, after discussing this situation with our family, we talked with Dad’s treating clinicians as his legally appointed substitute decision makers.
We were the voice that my Dad no longer had. 

Dad’s treating clinicians were respectful and accepting of the intent of our collective decision making, realising that our decisions aligned with what my Dad wanted, what he valued as life and what he didn’t want with medical intervention.

It wasn’t easy arriving at the decisions we did but we all knew that what we were advocating for Dad was what he wanted.
And that’s all that was important.