In a crisis your family may find it difficult to decide what treatment is best for you. In an emergency, you’re a stranger to medical professionals. Together, they need to make decisions that will impact the rest of your life. An Advance Care Directive will help your family and doctors to know what you would want when you are not able to tell them yourself.
What is an “Advance Care Directive”?
Basically, it’s a document.
If you have an accident and are unable to tell treating doctors you don’t care about your expected quality of life, you want them to do everything possible to keep you alive; this document will do that for you.
Or, you may feel you don’t want to be kept alive if it is will impact your quality of life. For example, if it’s expected you will need to be fed artificially through a tube for the rest of your life; this document is how you communicate that. Legally.
When completed, treating doctors will know what quality of life means to you, what treatments you do not want and who can speak on your behalf. It also serves as a really useful guide for your family who may be dealing with a number of medical teams, all who have a different way of looking at the body.
What’s included in an Advance Care Directive?
There are three key parts to an Advance Care Directive:
1. Life quality profile
When treating doctors or medical professionals need to know what it means for you to have “good quality life”, the information in this section tells them how you feel about physical activities, hobbies and importantly, how you feel about losing your ability to look after yourself.
2. Treatment directives
Legally binding instructions about life sustaining treatments based on different scenarios that can help avoid treatments you would refuse if you were able to communicate yourself.
3. Substitute decision makers
You can nominate someone specific to speak on your behalf, choose to have this follow the default law in your state and even specify anyone you are not comfortable with making decisions for you. It’s your right to choose, you just need to document it.
When are they used?
Only if you are not able to communicate due to illness, injury, medication or other substances.
If you are over 18 years and, do not have an existing condition that impairs your ability to make decisions, you have decision-making capacity.
If you were to suffer serious disease or severe injury, your decision-making capacity might become impaired.
This could be long-term or permanent such as suffering severe and irreversible brain damage or temporary, such as being put into an induced coma.
Who uses them?
Treating doctors, medical professionals and substitute decision makers. It also helps your substitute decision makers communicate your wishes to your loved ones.
Doctors and health care professionals will only look at your Advance Care Directive if you are unable to make or communicate decisions about your healthcare and treatment.
Your Person Responsible must refer to your Advance Care Directive before making any medical or health decisions.
Before acting on any instructions that your Advance Care Directive may contain about your treatment or care, doctors will assess if it is valid. Part of that assessment is understanding whether it applies to your current situation.
What’s the difference between Advance Care Planning and Directives?
Planning is a process, Directives are documents.
Advance Care Planning is the process of planning in advance for what medical treatment and care you do and do not consent.
It delivers on the principal of attempting to give each of us maximum control and autonomy over our own lives and our own decision-making.
We do it so that doctors and loved ones have guidance on what we want if we’re unable to communicate ourselves.
Anyone who does not have decision making capacity may be limited in options for making decisions about their own medical treatment and care. Therefore it is important to create your own directive while you’re well and have clear decision making capacity.
Who can create one?
Any adult with capacity
Only you can write your own Advance Care Directive and, you must have decision making capacity.
When can’t you write an Advance Care Directive?
- If it’s for someone else
- If you have dementia or any other impairment to your decision making ability
- If you’re under 18.
Who should create one?
There is a bit of a stigma around “Advance Care Planning” being for the elderly or terminally ill. Of course it is important if that’s where you’re at in life but, the reality is accidents and illness can happen at any time.
Why is it so complicated?
It’s important, legally binding and unfamiliar to most of us.
Advance Care Planning has been around for a long time and historically has been delivered by medical professionals who are familiar with the heath care system. Because most of us don’t have the benefit of their experience it can feel very complicated at first. There are tools available to help you.
Some useful links:
Flamingo Life website – providing tools for people to be organised for end of life including digital Advance Care Directives – https://flamingolife.com.au/
Carer’s Circle article on Guide to palliative care – what you need to know –
Carer’s Circle article on Talking about funerals, burials and final wishes –
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