Following National Advance Care Planning Week, Advance Care Planning Australia is urging everyone to have brave conversations about their future health care preferences in case they cannot make their own decisions at the time.
More than 50% of Australians will be unable to make medical decisions at their end-of-life but only 15% of people have an advance care directive. If you couldn’t make decisions for yourself, who would speak for you and what would they decide?
Tom, a Vietnam War veteran, had separated from his partner. The diagnosis of terminal cancer rocked him and he realised he needed to plan for his death. He didn’t want to choose voluntary assisted dying, but he knew the cancer might spread to his brain and affect his ability to make his own decisions.
He wrote his preferences in an advance care directive, including wanting to die at home with his dog Mac beside him. He wrote, “I know I might have to go to hospital, but please don’t let me live beyond my time”. He discussed this with his brother, James, and appointed him as his substitute decision-maker for health decisions.
“I have asked James to give my kids letters I have written to tell them how much I love them. I trust James knows me well enough to speak up for me so hopefully I can have my wishes respected at the end. Our Dad died with palliative care support and it was very peaceful. I want that when it's my time.”
While James was a bit nervous about the responsibility of this role, he knew it was a meaningful way he could support Tom through his final chapter. He asked Tom a few questions to make sure he understood his preferences and attended a medical appointment with Tom’s oncologist, to understand what to expect. This gave him more confidence and peace of mind that he could truly honour his brother by advocating on his behalf when the need arose.
Tom died with palliative care support, with Mac and his adult kids gathered around his bedside with his favourite Chinese takeaway, telling Tom how much they loved him. It was the peaceful death Tom had wished for.
The time is now to choose your substitute decision-maker
Now is the time to talk about your future health care preferences and appoint a substitute decision-maker. Visit advancecareplanning.org.au for more information or for an email starter pack.
For free advice or a printed starter pack, call the National Advance Care Planning Support Service: 1300 208 582 from 9am-5pm (AEST/AEDT) Monday-Friday.
This article was originally published in The Senior and The Last Post magazine.