"Two years ago Anna said 'no more'. She did not want any more medical intervention as she had seven years of going in and out of hospital.
Anna was born with Ring Chromosome 22 and had multiple brain tumours, which had become aggressive. The system didn't enable Anns to express her wishes through a Care Directive, as she couldn't sign or read the document - it was therefore not a legally binding document.
Anna worked alongside the team at HALC [LawRight's Health Advocacy Legal Clinic at St Vincent's Hospital] where she developed an Advance Care Plan which focused on Anna, the person, rather than Anna with a medical condition. It outlined who she was - outgoing, social butterfly, artistic, an accessories-guru and, most importantly, her likes and dislikes.
There was one page giving details of her multidisciplinary teams. It also outlined her 'end of life wishes', which clarified what was important to Anna.
She stated that she would like to be at home with family and friends, have flowers and music and go out in her car. She wanted a quality of life and no over-burdernsome treatments to keep her alive.
As it turned out it was only six months from completing the document that Anna collapsed and after a cat scan, Anna was given an option of another operation or approximately two months to live. Anna chose to rest at home.
I was able to share Anna's Advance Care Plan with her pallative team, nurses and support workers and they abided by it with much care and respect.
I found myself referring to the document regularly to ensure I was staying true to her wishes.
Anna's wishes were granted. She was home for seven weeks where she was showered with love, support, music, flowers and drives in her beloved blue car.
The Advance Care Plan made a huge difference to Anna's quality of life. The document was also very helpful for the Reverend who acted as the celebrant at Anna's Sacred Sunflower Service that the funeral was honouring Anna's wishes.
I am very grateful for the team at HALC for their valuable input to creating the template for Anna's Advance Care Plan and giving her the best outcome for her end of life and making her journey easier."
To honour Anna’s life, her mother Susan published “Universal Life Lessons from My Brilliant Blue Bohemian Butterfly”, which contains valuable information including 85 universal life lessons and links to organisations such as LawRight that made a difference to Anna's quality of life. For more information see www.universallifelessons.com