Almost 90% of Australians believe it is important to talk about their wishes and preferences for care, despite this, most Australians (56%) have not undertaken any action to talk about or record their end of life wishes. So congratulations on taking steps that ensure your wishes are known.

It all starts with a conversation with loved ones and those you trust. Palliative Care Australia has a range of tools to help you with those conversations and work out what matters most. Explore our discussion starter cards and workbooks HERE including specific tools for Aboriginal and Torres Strait Islanders and multicultural communities.

Once you've had those conversations you might feel empowered to take more formal steps to record your wishes.

Advance Care Planning Australia is funded by the Australian Government Department of Health and Aged Care to help Australians make the best choices for their future health and care. Below is a general overview of the steps you can take to put an Advance Care Plan in place, as well as links to Advance Care Planning Australia for more specific advice.

Advance care planning is a process to help you plan your medical care in advance. It is important because some time in the future you may become too unwell to make decisions for yourself.
If you have no problems communicating and can make your own health decisions, your advance care plan will not need to be used. Health care professionals will talk to you about your choices.

Doctors, nurses, and carers will refer to your advance care plan if you can no longer communicate or make decisions. For example, this might happen if you have a stroke or serious accident, or become unconscious, or if you develop dementia. In some cases illnesses, such as cancer, may mean the medication you take or the pain you have may make you unable to communicate.

Benefits of advance care planning

If you were very sick, it may fall to your family or close friends to make decisions about your health care. That can be a very stressful time where family members or loved ones may not agree with approaches to your care. If they have a document where you talk about the type of care that you would want, this can help them make decisions on your behalf.

It can help you too. For example if you were very sick, you might know that you don’t want to be kept on life support if you were not likely to recover. You might know that you want all available treatment, even if that treatment might have side-effects that make you very sick. Writing down what is, and is not, okay for you can help doctors consider your wishes and individual preferences when planning your care.

When should I do it?

You never know when you might be in an accident, or face a serious health condition. It is never too early to plan ahead. This can be as simple as talking to your family and close friends about your health care wishes. Some people see the completion of an advance care plan being just like filling in a Will. In fact, many people complete both documents at the same time.

If you have a chronic or terminal illness, if you are elderly or if your health seems to be getting worse, it is even more important to have a plan in place. Talk to your family about your health care wishes and document your advance care plan.

Advance care planning, next steps...

1. Talk to your family, trusted friends and carers about what you want, and don’t want, when it comes to your future medical treatment and care.

Take some time to reflect about the care that you would want. Don’t just think about whether you want to be resuscitated if your heart stopped or you stopped breathing. Also think about what outcomes would not be acceptable to you.

Tell your family who you have nominated for doctors to contact if someone needs to make medical decisions for you

2. Write down your wishes in an advance care plan document

Advance care planning can be an informal process, where you write down your wishes on any form or paper. It can also be more formal, including having documents that are legally recognised.

An advance care plan usually has the following parts:

• A list of the names and contact details of who can speak on your behalf with your doctors, if you are unable to. This person is sometimes called your ‘substitute decision maker’
• A description of the care outcomes that would, and would not be acceptable to you
• A description of any treatments or services that you do or do not want
• Other wishes, such as wanting to die at home or in a hospital, having your family with you or having your pet with you
• Your signature, a witness signature and the date

It is OK to upload an advance care plan that you have written. It may not be legally binding in every state and territory, but should be respected by people making health care decisions for you.

To formalise your advance care plan, and to appoint a legally recognised substitute decision maker, the process is a bit different in each state and territory.

The legal document about your health care wishes is called an Advance Care Directive (or other similar term depending on where you live). An advance care directive is often restricted to what treatments you do and not want, such as restarting your heart if it stops. Even if you have an advance care directive, your advance care plan may have more information about your goals of care. It will help your family and doctors to understand your values and may help in a broader range of situations.

The legal document about who you want to make health care decisions for you is called an Enduring Power of Attorney (or other similar term depending on where you live). If you want to make sure that doctors listen to the decisions of this person, it is very important to have this document. It is particularly important if the person you want making decisions for you is not your next of kin.

3. Share your advance care planning documents

You should share your advance care planning documents with the people who can be contacted should the need arise.

There is now a space for you to save your documents online. Your My Health Record is a great place for this.

This will help make your treating doctors, hospitals and other healthcare providers aware that you have specific wishes about your future medical treatments or care given to you. Of course, you can also share your documents with your GP, Aged Care Facility and other healthcare providers who are involved in your care

Remember to review your plan regularly, and update whenever your wishes change. You can change it at any time.

For specific information relating to your state/territory: