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An advance care directive is a standard document in the information pack you’ll receive when moving into residential aged care.
This document gives you the opportunity to be clear about the healthcare you want in the event you can’t speak for yourself and need to rely on others.
But old age isn’t the only time you may need to rely on someone you trust to make decisions concerning your medical treatment on your behalf.
As highlighted by the rapid onset of COVID-19, people of any age can become critically unwell.
It is not unusual for families to be unaware of their loved one’s views about what they want done when they are too ill to speak for themselves. It is not something we readily share and, if we do, it may not be written in a format that will be taken as seriously as it should.
Families without a clear path to take often feel burdened by the concern that they will make a wrong choice.
This is where an advance care directive comes into play. It may also be known as a living will or advance care plan.
What does an advance care directive look like?
There is no national advance care planning legislation in Australia, so the requirements and forms for writing advance care directives and appointing substitute decision-makers vary between and states and territories.
In some states, an appointed enduring power of attorney may be able to make medical decisions on your behalf. In others it may be an enduring guardian.
Find all the forms and requirements depending on where you live here.
Regardless of where you live, common requirements include questions about your current health and statements that help your chosen substitute decision-makers make medical decisions on your behalf.
The statements may include what quality of life means to you.
In general, a valid advance care directive will apply in other places in Australia, although there may be some limitations and additional requirements.
Similarly, the appointment of enduring guardian will usually apply, but there is variation in the laws within Australia.
Specific advice is available from the Office of the Public Advocate or equivalent in the relevant state or territory.
If you are permanently relocating to a new state or territory, it is recommended you update your documentation using the recommended form(s) in consultation with your doctor and substitute decision-maker.
What makes an advance care directive valid?
An advance care directive is a legal document that can give a sense of certainty and control as your health declines.
However, for an advance care directive to be legally binding, the person completing it has to be competent and it must be signed by a GP or health professional and a witness.
There are different forms to be completed by those acting on behalf of someone who may have lost the capacity to express their wishes, but they won’t be legally binding.
The involvement of a GP is to help remove any ambiguity around what a person may want and what they understand about medical interventions such as CPR or life-prolonging treatments.
For example, you may elect to have CPR provided the doctors expect a reasonable outcome.
But a reasonable outcome can mean different things to people. For some, just being able to talk will be enough to want to keep living. For others it will be important to be able to talk and walk and anything less would be unacceptable.
The choice between CPR and no CPR is an interesting one to consider.
CPR is one treatment people are often asked if they want used in case their heart or breathing suddenly stops. It makes sense if there is someone close by who knows first aid and that they should push hard on the chest to get the lungs going again.
Unfortunately, the chest pumping action is not quite what we see in the movies where the recipient jumps to life. Rather, CPR can often be a life-prolonging treatment rather than a quick start to full recovery.
If CPR is not started and done properly within about five minutes of the stoppage of the heart or breathing, there could be permanent brain damage. Even if CPR is started early and done correctly, it often doesn’t work. Fewer than one in five people who receive CPR survive and return to their previous normal life and normal level of function.
Not surprisingly the likelihood of success is much lower for an older person or someone with a serious illness or dementia.
Conversations are important
Starting the conversation about what sort of medical intervention you would want can come in many forms.
There is the shock approach. For example, if you were in a coma following a car accident, would you be okay being kept alive by machines? Or, if you have a terminal illness and if medical treatment could delay your death by two months, would you want it?
Being clear about your wishes involves thinking clearly and considering and sharing your beliefs, values and preferences regarding your current and future healthcare.
It is also about your attitude and life goals regarding healthcare treatment options and how well you understand what counts as life-prolonging treatments.
An instructional directive such as “I don’t want CPR” or “I don’t want to be tube-fed” is one way of looking at advance care planning.
Another way is to think about what is important to you or what it means to live well.
Before you start thinking “It will never happen to me” and “I don’t need one of those”, consider the statistics: 50 per cent of people will not be well enough to make their own end-of-life medical decisions and one-third of us will die before the age of 75, most likely after a chronic illness rather than a sudden death.
Where should I put a copy of my advance care directive?
What you do with your completed directive is up to you. You can carry it with you, give a copy to your GP and local hospital, and/or upload it to the central health database My Health Care Record through MyGov.
If you have appointed a decision-maker, they should know that you have an advance care directive in place and where to find it.
Your advance care directive is not set in stone and your views and decision about who you want to make decisions on your behalf may change. This makes it important to keep it up to date.
What difference will it make?
Generally, according to End of Life Directions for Aged Care (ELDAC), a health professional must follow a valid directive, even if it instructs them to refuse life-sustaining treatment, which will result in a person’s death.
If they do not follow the instructions, a health professional could be liable under criminal or civil law.
There are some limited circumstances in which a directive does not have to be followed, such as when it is too uncertain to guide decision-making or where circumstances have changed so much since completing the directive that it should not be followed.
Research has shown that advance care planning can reduce anxiety, depression and stress in families.
Family members who know a directive is being followed are also more likely to be satisfied with their loved one’s care.
Time for action
Fewer than 15 per cent of Australians have documented their end of life wishes in an advance care directive.
Most of us have a clear view of what is important to us to live well and what we value in life. Now, all we have to do is share that – preferably in writing – even better if it is outlined in a legal document relevant to your state or territory.
Without a clear statement of a person’s wishes, doctors must treat them in the most appropriate way to save their life. This can mean aggressive treatments that you or your loved one may not have wanted.
We have all heard stories of people being kept alive by machines or under circumstances that are undignified, possibly causing unnecessary suffering.
Most deaths occur after a chronic illness, not a sudden event, which gives plenty of opportunity for an advance care directive conversation.
Bina Brown is director of aged care solutions company, Third Age Matters.