About other people's experiences

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My mother, one of six children, was a survivor.  Her entire life had revolved around helping others, seeing to their needs and care, which resulted in a Senior Canberran of the Year award and receiving an OAM for her services.  An avid reader of books and articles, she also kept up to date with the politics of the day through her daily newspaper deliveries, radio and television.  As she neared her late 80s she suffered a number of strokes but always rallied round, her body more frail but her mind ever active. By 2011, aged 97, she was living in a residential care facility in Canberra, wheelchair bound but still mentally alert. 

In May 2011 she suffered yet another stroke but this one left her unable to speak and she lost the use of her right hand.  However, her mind remained active albeit sometimes jumbled as she desperately tried to communicate with us.

My mother had an ACP which had been registered and was noted at the hospital on their computer records.  I was her nominated advocate.  After two weeks it was obvious there was to be no recovery this time. She was unable to swallow effectively and fluids and food became a dangerous combination.  My mother had watched her sister suffer a slow, painful and unwarranted delayed but inevitable death taking over 6 years due to intervention and she had been adamant this was not the path she wanted to take when the time came.

I was humbled my mother chose me to be her advocate but it was not an easy role to accept or to activate and then follow through.

My mother had always been clear regarding no intervention eg feeding tubes, antibiotics, and the desire to die with dignity and free of pain.  I can only say my role as my mother’s ACP advocate and the path and decisions I had to make over the following weeks, though deeply distressing at times, was made all the more easier because of her ACP.  One sibling, who lived overseas, was supportive but glad not to have taken on the advocacy role; but my other sibling was not.  If it hadn’t been for the ACP I believe my mother’s death would have been a protracted and family-destroying event as my sibling living locally endeavoured to change any decisions I made.  With my mother’s signature on the ACP, this sibling had no true recourse other than to accept our mother’s decision and wishes. I knew, quite clearly, the path I was taking on behalf of my mother and why.  This wasn’t about me or my siblings or our wants and needs it was about our mother’s wishes made when she was mentally and physically able about how she wanted to die – with dignity, grace and free of pain – and all is well now between my siblings and myself.

My mother was transferred to our local hospice where 3 days later she died as she had wanted - peacefully and without pain.  All her family and friends were a part of her hospice experience and the medical staff and volunteers were immensely supportive and understanding of both my mother’s needs as stated in the ACP and of my role in implementing those needs.




Respecting Patient Choices consultant Emma talks about helping a couple complete an Advance Care Plan

Capital Health Network gratefully acknowledges the Rural Health Foundation production of
this video (2011) and permission granted for it's use.

Advanced Care Planning
Public Trustee and Guardian
ACT Government Health
Capital Health Network

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