Carol is in her seventies. She lives independently and alone in country Victoria. A few years ago, Carol was given a number of major health diagnoses that sparked the beginning of her advance care planning journey.
Following her second major fall in less than two years, Carol underwent a series of medical investigations.
When Carol saw her GP to discuss her results, the doctor explained that Carol had experienced a series of small strokes that also put her in the risk category for dementia. Test results also showed cardio vascular disease. The diagnoses, coupled with a family history of Alzheimer’s disease, meant Carol was now dealing with multiple and complex health conditions.
In a follow-up appointment Carol’s GP checked in to see how she was coping with the diagnoses and gently started an advance care planning conversation with her.
“Carol, I want you to do something for yourself – open your laptop and just start writing: What do you want to do with the rest of your life?”
At her GP’s suggestion, Carol started to write down the things that were important to her and her goals in life.
Living with illness. Living well
Initially shocked by her medical results, Carol has now come to terms with her conditions. She feels better prepared to deal with them and has adopted a healthier lifestyle.
“Let me tell you, it has been one of the most wonderful and glorious things in my life to know because with better management and care my health has improved out of sight,” explains Carol.
Carol feels that the information from her medical tests, as well as ongoing treatment and allied health care has changed the way she views herself and her health.
“I now see myself as a well person with significant risk factors which are treatable and manageable with help. It means periods of acute illness, and also falls, but it is no longer scary. I can live and I can contribute. Life is good again.”
An ongoing process and conversation
Reaching satisfaction with her advance care planning took time. Carol says it was two years from when she took the first steps with her GP. She now has an advance care directive for acute events. It has been signed, witnessed and reviewed.
Carol’s next step is to develop an advance care directive should she lose capacity through dementia. She has shared the process with her three substitute decision-makers.
“I am still pondering losing competence through my significant risks for dementia. With medical coaching, I’m doing everything I can to prevent it, but, who knows?
Carol is most grateful for the advance care planning support and guidance she has received from her GP and she also sought information from the Advance Care Planning Australia website.
Choosing a substitute decision-maker outside family
As someone living independently and alone, choosing the right substitute decision-maker was important to Carol. She ultimately chose friends who had the capacity to carry out her wishes in a crisis. Carol also chose substitute decision-makers with a professional or health care background.
Carol says that her friendships have been strengthened through the advance care planning process. “None of my friends had done advance care planning, so I was pioneering. We all learnt a lot and are still learning. I’ve coached one of them about the ACP process too.”
Finding peace and getting on with living
Carol is full of praise for her GP and the support she provided for Carol to do advance care planning. “It is good medicine.”
“I don’t have strong enough superlatives – and it’s been so gentle. When I look back I see what she gave me that encouraged me through that process. I could have done it faster, but I chose not to. I’m steadily clear what is in my best interests and in the best interests of those close to me.”
Carol is also satisfied that with her advance care directive in place and in a supportive community, her clear preferences will be heard and respected if there ever comes a time when she couldn’t communicate them herself. She carries her advance care directive and minimal medical information when out of her country town.
“I could not have more peace of mind than living in my country town where I am known, where my health records are, where my ACP is lodged, and where all of my substitute decision-makers know my GP and I am known a bit by other GPs. How blessed am I?”