From March 22-26, Advance Care Planning Week highlights the importance of considering and documenting your future healthcare preferences in preparation for a time when you may not be able to communicate them.
A bit of planning now can help ensure your wishes are respected, take pressure off loved ones, and minimise the risk of family conflict at what is likely to already be a stressful time.
Despite these benefits, however, only 14 per cent of Australians currently have a plan in place. Consequently, many people don’t have the end-of-life experience they want. For example, 70 per cent of Australians would prefer to die at home, but less than 15 per cent get to do so
What is advance care planning?
Advance care planning involves planning for your future healthcare. It’s an opportunity to consider what you would or would not like to happen should you suffer a serious illness or injury and cannot make decisions or express your preferences. Often, it relates to the type of care you’d prefer to receive at end of life.
Violet Guide Marian York, who worked in palliative care for 14 years, explains this can include things such as:
- whether you’d like to be resuscitated and/or placed on life support in a life-threatening event
- whether you would undergo invasive surgeries
- whether you’d like to receive intravenous fluids as you approach end of life
- what level of pain relief you would prefer.
Ideally, your wishes should be recorded in a statutory document (which is called an Advance Care Directive in New South Wales and Victoria but may have a different name depending on your state or territory), and someone is appointed to act as your substitute decision-maker to help ensure your wishes are respected.
Find out more on Advance Care Planning Australia’s website.
Why do advance care planning?
We plan for things like holidays, education, and careers, so why not something as important as our future health? However, “in my experience in palliative care, the amount of people that didn't have an advance care plan was astounding,” Marian says.
“People seem to think, I’ll do that when I'm sick or when I get old. But my answer is you should always have one whether you're 18 or 80, because you never know what's going to happen to you.”
As Advance Care Planning Australia (ACPA) points out, planning also improves end-of-life care, along with personal and family satisfaction.
Reducing decision-making burden on families
Along with ensuring your wishes are respected, having a document in place can make life easier for your loved ones at a time that is likely to be fraught with emotions. “Families of people who have undertaken advance care planning have less anxiety, depression, stress and are more satisfied with care,” ACPA notes.
As Marian explains, if a document isn’t available, the onus of making potentially difficult healthcare decisions will fall on the family. Furthermore, “family members may have different opinions as to what should be done.
“A lot of people say to me, ‘My daughter knows what I want, and I trust her to make that decision’. My comeback is always, ‘how many other children do you have?’ Your daughter might be okay with saying ‘turn off the life support for mum or dad’, but someone else might want to fight until the end. If you've got a directive, then they know the answer.”
A scenario like this can put families under extra stress, which can lead to conflict, Marian adds. She uses the example of pain relief for a dying loved one to explain: “One family member might say ‘I want mum to be awake and able to talk when I visit her’ and the other will say ‘no, I don't want her to be suffering. I want her to be asleep all the time’. If it’s in your advanced health directive, that's what has to happen.”
Family conflict and poor communication is also proven to result in non-beneficial treatment, potentially adding to the strain on someone nearing end of life, and their loved ones.
Starting the advance care planning conversation
Understandably, talking about care wishes with loved ones can be confronting, Craig Gear, the CEO of the Older Persons Advocacy Network told ACPA.
“My advice is to get the conversation going,” he says. “It is so important that we consider how we want to live in a of a variety of future scenarios, the type of care we wish to receive, who we want making decisions about our care if, for whatever reason, we can't. Talk about it with the people closest to you and who you trust, like friends, loved ones, carers or your doctor.”
Having that conversation early can save a lot of stress later. As Marian sums up: “It's amazing the difference it makes to people when everything is sorted.”
For more visit Advance Care Planning Australia. Their website offers detailed information, plus training and education to increase your knowledge and ensure you are well prepared to document your wishes.
Violet exists to change the way we spend our final days, a life stage we call 'the last stage of life'. We help carers with acceptance, preparation and communication by providing support through our Violet Guided Support Program and our growing library of stories and information.