National Advance Care Planning Week encourages conversations about future care needs

Retired nurse Ann Pietsch is living with Lewy Body Dementia. She decided to start planning for her future by talking to her husband Timothy about her preferences and writing an advance care directive.

“After I was diagnosed at 59 years of age, I appointed my husband as my substitute decision-maker,” Ms Pietsch says.

“Should the time come when I cannot make my own decisions, I know he will uphold my rights and values.”

As part of National Advance Care Planning Week, running from 20 – 26 March, Ms Pietsch shares why having her preferences known to her loved ones was important to her and urges others to do the same.

The Dementia Australia Dementia Advocate says she feels empowered having a directive detailing what is important to her.

“I love my pets, fine music and being out in the garden. I want to stay home as long as practical. I would like visits from the church pastor, and I do not want to play bingo.

“I have covered how I want to be cared for. I don’t want extreme measures if I am very ill, and I don’t want tube feeding.

“My family will feel empowered to ensure I will be cared for as I wish as my advance care directive will go with me if I go into hospital or into care.”

Ms Pietsch adds “I know it can be a shock after diagnosis of a condition like dementia but it is so important to get an advance care directive in place with tangible examples of what you do and don’t want.”

Joining forces during National Advance Care Planning Week, Advance Care Planning Australia and Dementia Australia are urging everyone to have brave conversations about their future health preferences in case there comes a time when they can no longer express their wishes.

More than 50 percent of Australians will not be able to make their own medical decisions at end-of-life but only 15 percent of people have an advance care directive.

“Whatever your health status, advance care planning is important,” says Advance Care Planning Australia Program Director Xanthe Sansome.

“Through the pandemic, we have been confronted with the reality that any of us could become critically ill at any time. Advance care planning is not something any of us should delay any longer.”

Maree McCabe AM, Chief Executive Officer of Dementia Australia adds that if you have a life-limiting illness, dementia or another neurological condition, it is vital to have these important conversations at a time when you are well enough to make these decisions and future plans.

“In 2023 it is estimated that there are more than 400,000 Australians living with dementia,” Ms McCabe says.

“Without a medical breakthrough, the number of people with dementia is expected to double by 2058. Each and every one of us should have an advanced care plan and this becomes even more compelling in the face of diseases such as dementia and other life-limiting diseases.”

Dementia Australia Dementia Advocate and carer Heather cared for her mum who lived with dementia, and her grandparents. None of them had advance care planning documents that would have made things easier.

“I had to make really confronting, complex decisions in a crisis,” Heather says.

“Now I am caring for my dad, with cognitive decline, and I am seeing how conversations about his preferences can make a difference.

“Whatever your state of health, please make a gift to your family members or your carers by sharing your future health and care preferences.

“This would allow them to focus on loving and caring for you, rather than spending their time trying to understand the impacts of the treatment decisions they are being asked to make.”

To find out more about advanced care planning or to request a printed starter pack, call the National Advance Care Planning Support Service on 1300 208 582  or visit acpweek.org.au