Support, guidance & advice for todays primary carers
Ambassador Kellie Curtain urges Australians to have vital conversations about future health preferences.
Following National Advance Care Planning Week 2023, Advance Care Planning advocate Kellie Curtain is urging Australians to have their advance care planning documents in place for both them and their families.
The Advance Care Planning Australia Ambassador and producer/ host of Breast Cancer Australia Network’s Upfront Podcast series know the importance of honest and open discussions – because she’s had them.
The conversations she had with her mother in the weeks before she died of breast cancer in 2010 formed an invaluable blueprint for her mother’s care. Alarmingly, only 15 per cent of adults have an advance care directive, and half of Australians are not able to make end-of-life medical decisions.
If you found yourself suddenly too ill to make treatment decisions, who would make those decisions on your behalf – and do they know what you would want?
“Opportunities to learn more about my mum”
Ms Curtain said an advanced care plan allowed a person to control the narrative and to take time to really consider what was important to them and their loved ones.
She explained that having conversations about the final stages of her mother’s life and death wasn’t about giving up hope; rather, it was about planning for the inevitable.
“There were a lot of things that she could not have cared less about, but I didn’t want to get it wrong or live wondering if I’d got it right, so I asked, she answered, and I wrote it down,” she said.
“I am forever grateful that I did because, in the heightened emotions, I would have forgotten. I knew she wanted to die at home, she told me she didn’t want visitors and said she didn’t want ‘Wind Beneath My Wings’ played at her funeral.
“Those conversations that we had over cups of tea and glasses of wine were at times awkward; they were sad and confronting, but there were a lot of laughs too. They led to countless opportunities to learn more about my mum and to say, ‘I love you’.”
Ms Curtain, a mother of four, explained that taking charge of your advance care plan or having the conversation was an act of love.
“We rarely worry about things that make us uncomfortable if it protects the ones we love. An advance care plan or a conversation will do that. The reality is not talking about dying and death won’t stop them from happening. But it might leave those you love most with the heavy burden of big decisions and the fear of making the wrong ones.”
15% of adults have an advance care directive
Don’t Delay Important Conversations
Advance Care Planning Australia Program Director Xanthe Sansome said, “In light of our experience of the COVID-19 pandemic and the low number of Australians with advance care plans, it shows how important it is for Australians to have these tough but important conversations.”
“Through the pandemic, we have been confronted with the reality that all of us, including those we care for, could become critically ill at any time. Advance care planning is not something any of us should delay any longer – whether we are the carer or the one being cared for.”
While already carrying a load of responsibility, it’s important that, as carers, we understand what might be expected of us if we’re called upon to make medical treatment decisions for others.
Making these decisions for others is hard. It can be needed following a sudden medical event or a gradual decline when the person we love becomes unable to communicate for themselves.
Advance care planning can ease the stress for carers and family members and help ensure we are following our loved one’s wishes.
How Can We Prepare for Future Health Care? What to Consider?
It’s important for us to consider our values, beliefs and preferences for our future health and care while we are still able to make decisions and communicate our preferences and acceptable outcomes.
To effectively communicate values and preferences to others, we must first know and understand these ourselves. Take the time to consider the prompts below together, and then share your thoughts with your loved ones.
Our Current Health
• Do we feel we have a good understanding of our current health?
• How does our current health affect our lives?
Our Future Health
• What makes life worth living? For example, talking to our family
• What short and long-term goals do we have? For example, attending a birthday, going on a holiday
• What abilities do we need to maintain to preserve our dignity? For example, toileting independently
• What if we cannot recognise or communicate with our family?
• What if we cannot eat or drink?
• What if we lost our independence and needed help to do everything?
We should think about the medical treatments we may or may not want. This is no different to arranging our life insurance or our Will. There are no wrong answers to these questions.
Have any past experiences of health care influenced our views on our future care? These may be positive or negative experiences that have happened to ourselves or others.
What Treatments Will Help Us to Live the Way We Want?
What would be outcomes we would find acceptable? For example, we might feel we have to be able to feed ourselves or think for ourselves.
How may our cultural, religious or spiritual beliefs affect our choice of medical treatments or influence our care preferences?
Are there any medical treatments that we feel strongly about – either having or not having? Consider life-prolonging treatments.
Don’t Assume Loved Ones Will Know Our Wishes
Encourage the person you’re caring for to speak to family members and others close to them about their views and preferences for medical care. We need to do the same for ourselves.
Having a close or loving relationship does not always mean someone knows or understands our preferences.
The more loved ones understand our preferences, the easier it will be for them to help guide our medical treatment and to focus on our needs rather than wondering what the right decision might be.
For tips on talking to our loved ones about our preferences, read about starting the conversation. We should also speak to our doctors.
They can provide us with information and advice regarding our current health situation and what may happen in the future. We can ask questions about the impact of treatments on our well-being or how this might change without certain treatments.
The more loved ones understand our preferences, the easier it will be
Choose a Substitute Decision-maker
A substitute decision-maker is someone we choose to make medical treatment decisions on our behalf if we become unable to do so. We can choose more than one substitute decision-maker.
They should be somebody:
• we trust
• who is over 18 years
• who will listen carefully to our values and preferences for future care
• who will be comfortable making decisions in difficult situations when choosing our substitute decision-maker/s. We should ask ourselves the question: ‘Am I confident they will make decisions based on what I would want?’
Some people we might want to consider are our:
• close friend
• adult child
• cultural leader
Our chosen substitute decision-maker/s* may have to make important decisions on our behalf, so it’s important for them to understand what’s involved with being a substitute decision-maker.
*Substitute decision-makers may have different titles depending on the Australian state or territory you are in. Find out more at advancecareplanning.org.au
Record Your Choices
After we’ve thought about our future health care, discussed it with others and selected a substitute decision-maker, we should record our choices in the required document (or documents). The process of doing this varies between states and territories.
While these forms differ across Australia, most advance care directives provide an opportunity to complete both values and instructions for medical care. The values section helps others understand what is most important to us and what outcomes we would find unacceptable.
The instructional part of the advance care directive specifies which medical treatments we would consent to, refuse or withdraw from (e.g. tube feeding, CPR, palliative care etc.) It can be challenging for individuals to fully understand the benefits and burdens of different treatments.
It is a good idea to complete this with the support of our GP or treating team.
Make Documents Accessible
Our advance care directive is of little use to anyone if the only copy is locked away in our solicitor’s office or filing cabinet. Given that an advance care directive may be needed in an emergency or crisis, we should keep our advance care directive accessible at home, such as near our medicines.
When we ask our doctor to sign our documents, we should check if they can upload advance care planning documents to My Health Record (digitalhealth. gov.au/ACP) or upload them ourselves.
We should share copies with our chosen substitute decision-maker, loved ones, local hospital and other health providers. This will enable documents to be accessed when they’re needed most so everyone is aware of our choices.
The values section helps others understand what is most important to us
Keep Documents Up to Date
Life changes, and so do we. It’s important to review our advance care directive every year or so. Major life events such as retirement, divorce, the onset of a significant illness or a change in our prognosis or the ability to manage daily activities are good opportunities to review our plans with fresh eyes and ensure others know about any changes.
Free Information and Support
Visit advancecareplanning.org.au to access a free email starter pack and other helpful information.
For free support or to ask for a starter pack to be mailed, call the National Advance Care Planning Support Service on 1300 208 582 from 9am – 5pm (AEST) Monday to Friday.
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