Be prepared: plan now for future health and care
There are two things certain in life - death and taxes. One of them only happens once. As much as people don’t want to talk about it, most of us have prepared our loved ones for some key aspects following our death by writing wills and arranging funeral plans. But have we prepared them for making some of the hardest decisions of their life - decisions that may literally determine how well we live and die?
Over 50 per cent of people approach their end of life without the capacity to make their own decisions. So, decisions about whether to insert a feeding tube, move to an aged care facility or be resuscitated (and many more) are often left to family members who are making the decision ‘in the dark’ while upset about our declining health. But we can change that.
Be Open, Be Ready, Be Heard
The first step is to think about what our unique ‘quality of life’ looks like. Or if that is too hard, maybe what a poor ‘quality of life’ looks like. It will be different for each of us. Maybe I could accept being able to eat only pureed food, but would never want to have surgery that left me with ongoing pain. It might be that my neighbour wants to live ‘at all costs’ as long as they can still communicate meaningfully with loved ones.
If my sister couldn’t move or talk, she might feel she would be happier looking out on a garden view and find it demeaning if she had people bathing her without introducing themselves. Thinking about all aspects of our lives and considering what matters most to us is the basis of advance care planning. Advance Care Planning Australia has ‘Conversation Starters’ that provide focussed questions to help us get started.
Once we have bravely thought about some of these things, the second step is to talk to our doctor and all those who may be asked to make decisions on our behalf. Family members may be shocked, cry, or even initially refuse to talk about it. Yet hopefully there can be an open and honest conversation about what really matters and how this influences our preferred health care outcomes and treatment decisions.
The third step is to decide who will make decisions for us and fill in the form that legally appoints this person – the name of this form differs in every state/territory but all are available from Advance Care Planning Australia.
We should also write down our preferences for health and personal care in either a legally binding advance care directive (which also has different names in each state) or a values-based advance care plan. These documents are used to inform care and help decision-makers know our preferences.
We can discuss our preferences with doctors and ask them to sign our documents. Check if your doctor can upload advance care planning documents to My Health Record or upload them yourself. We should share copies with our chosen substitute decision-maker, family, local hospital and other health providers. This will enable documents to be accessed when they’re needed most so that everyone is aware of our choices. It is important to review these forms regularly, especially if our medical situation or care needs change.
Xanthe Sansome, the National Program Director for Advance Care Planning Australia suggests, “We should talk regularly about our quality of life and health care preferences so everyone is on the same page if treatment decisions are needed. The last thing I would want in my final days is hearing two people I love disagree about what medical treatment decisions to make on my behalf. I would rather be calm, knowing I had made this very clear to them, lying comfortably on my favourite silk pillowcase with the scent of roses in the air and listening to them reflect together on my life and the person I had been to them. I would rather they feel at peace as they say, ‘Goodbye, we love you’.”
Free starter pack and support are available
For free, personalised advice or to request a printed starter pack, call the National Advance Care Planning Support Service on 1300 208 582 from 9am - 5pm (AEST/AEDT) Monday to Friday.
Visit Advance Care Planning Australia’s website to access a free email starter pack and other information.
You can also find face to face awareness raising events and online webinars available Australia-wide during National Advance Care Planning Week from 20 – 26 March.
Advance Care Planning Australia is funded by the Australian Government and administered by Austin Health.
This is a sponsored article produced in partnership with Advance Care Planning Australia.
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