As CEO of Carers Australia and previous Chief Executive of Palliative Care Australia, Liz Callaghan has been a long-standing advocate for advance care planning. Liz took some time to talk to us about her views on advance care planning and the value it can bring to Australian carers.
Why is advance care planning important to the carers’ community in Australia?
Advance care planning can guide family and friends and carers through the difficult decisions surrounding care preferences and life-prolonging interventions when their loved one is unable to make those decisions for themselves. It can also help relieve the stress and anxiety that carers may feel during this difficult time.
Sometimes there are circumstances where a loved ones’ family may disagree about the right course of action, or a carer might have different beliefs around end-of-life decisions compared to the person they are caring for. Having an advance care directive in place can help prevent these challenging situations from arising.
Have you had advance care planning conversations with your family/loved ones?
As the former CEO of Palliative Care Australia, end-of-life discussions has always been very important to me and are conversations I have had with my family. Now at Carers Australia, we are working to promote advance care planning to carers as it is an important conversation everyone should have.
What advice would you give to a person or carer contemplating advance care planning?
My advice is don’t keep putting it off, and if you’re a carer, encourage the person you care for to not put it off either. It’s not something you should only think about when you have been diagnosed with a potentially life-threatening illness or you are old. Life can change at any time.
Set yourself a target date for completing a plan or a directive, allowing yourself enough time to think through the issues. Talk to your family or other key people in your life, and consult with your GP who can help you put your plan together.
Advance Care Planning Australia is an excellent source of guidance. It provides information about what advance care planning is and isn’t, the issues you need to think about and discuss, the sorts of medical situations and treatments you may be confronted with, how to develop an advance care plan or advance care directive, and the different legal frameworks for different states and territories.
I would also recommend that you share your plan with key people in your life, especially your family, friend and carers and that you load the plan or directive onto My Health Record. Often, these plans and directives are not immediately at hand when they are needed. The challenge of locating these documents is removed once they have been incorporated into My Health Record.
Why do you think so few people engage with advance care planning?
There can be a number of reasons. Often, people may simply not have heard of advance care planning. Or if they have, many may find contemplating the circumstances surrounding their potential death very confronting.
There is a natural tendency to put these matters off until such time that you receive a diagnosis or are reaching an age where you or your loved one thinks such a plan might be needed. It can be even more confronting discussing such circumstances with loved ones, let alone going on to document a plan against a future possibility.
From the point of view of carers, prompting the person you care for to engage in this space if they are unwilling to do so is challenging.
What can be done to improve this?
It makes a big difference when medical practitioners view carers as partners in care and take the time to discuss the prognosis for the person they care for, the medical options available, and their likely consequences.
The existence of an advance care directive for the person being cared for can relieve carers of the responsibility of making difficult decisions for the person they care for.