Learn about the importance of advance care planning and how thinking about, discussing and recording your future care preferences helps your family and friends understand your choices.
Learn more about:
- What is advance care planning?
- Who needs advance care planning?
- What does advance care planning involve?
- How to start an advance care planning conversation
- What are advance care planning documents?
- What is a substitute decision-maker?
- Advance care planning legal considerations
- Palliative care
- Useful websites
What is advance care planning?
Advance care planning involves thinking about the future and how you want to live and be cared for. You
can talk about those plans with your family, friends and treatment team. This helps them understand
your values and beliefs, and helps ensure that your wishes are respected.
Who needs advance care planning?
Advance care planning is important for everyone. It can be done any time, whether you are sick or well. It
is especially important for anyone with an illness that they will live with for the rest of their lives, such as:
- an advanced chronic illness
- a life-limiting illness, such as advanced cancer
- a risk of dementia or a related illness.
Like making a will, advance care planning helps you plan for the future. An advance care plan records
your wishes for care while you are alive, while a will outlines your wishes for after you die.
What does advance care planning involve?
Everyone has their own preferences for medical care and these can change over time. Advance care
planning can involve:
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Asking for advice and help
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Details and documents
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Questions for your doctor
You may find this checklist helpful when thinking about the questions you want to ask your doctor. Consider taking a support person with you – this could be a family member or a friend – to help you record and remember the answers
- What is advance care planning? Who can help me with this?
- What financial and practical assistance is available?
- Can you help me talk to my family about what is happening?
- Who can I talk to if I have concerns about my decisions?
How to start an advance care planning conversation
Thinking about the future can be difficult. However, some people find it a relief to talk about it and make
plans with those around them.
Studies show that families can feel less stress and worry when a person reaching end of life has done advance care planning.
Think about what matters most to you. You may want to find a balance between what medical care can achieve and the side effects of treatments.
How you feel may change as your circumstances change. It’s okay to add to or make changes to your advance care plans. You and your family may find it useful to start thinking about these issues before they are raised by a health professional. Or you could ask a social worker for support.
Some phrases to help start the discussion
“I know it’s uncomfortable to talk about what happens if I don’t get better, but it’s really important to me.”
“We’ve talked a bit about what happens after I die, but we need to talk about what happens if I become more unwell and not able to function.”
“My health care team say I should discuss a few things with you…”
For more information about talking to your family and friends see Living with Advanced Cancer and Talking to Kids about Cancer.
What are advance care planning documents?
As part of advance care planning, you can write down your wishes. This may be called an advance care directive, an advance personal plan or health direction depending on your state or territory. This legal document records your values and treatment preferences. You can find these documents for each state and territory at advancecareplanning.org.au.
You may include:
- details of treatments that you want
- treatments you would refuse to have
- what is most important to you for end-of-life care.
Your health care team can help you write this, and you can change or cancel it at any time.
Doctors, family, carers and substitute decision-makers (see opposite) will consider this if you become unable to communicate or make decisions. You can ask your doctor or hospital to place the document on your medical record. You can also save it in your My Health Record.
What is a substitute decision-maker?
Capacity means you are legally able to make your own decisions. In general, it means you can:
- understand and remember information about available choices
- understand the consequences of your decisions
- communicate your decisions.
A substitute decision-maker is someone you choose, by law, to make medical decisions for you if you cannot in the future. This should be someone you trust and who understands your values and preferences, and who will be able to make decisions you would want.
Talk with the person you want to choose as your substitute decision-maker first. They may not want the role, or they may not agree with your wishes.
Depending on where you live, generally, an “enduring guardian” specifies a substitute decision-maker for your medical care and living arrangements once you have lost mental capacity, and an attorney appointed under an “enduring power of attorney” or a “financial manager” is a substitute decision maker for financial decisions once you have lost mental capacity.
What is a default decision-maker?
If you lose capacity to give consent for medical treatment and you don’t have an advance care document or a substitute decision-maker, the guardianship law in each state and territory outlines who may make medical treatment decisions for you. This is usually someone close to you.
Advance care planning legal considerations
Each state or territory has different laws that deal with advance care planning and substitute decision-makers.
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Legal adviceTalk with a lawyer for advice specific to your situation. In some cases, Cancer Council may be able to connect you with a lawyer for help in appointing a substitute decision-maker. Find out more about Cancer Council’s Legal Referral Service. |
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Advisory serviceFor general advice, you can call Advance Care Planning Australia’s advisory service on 1300 208 582, or visit advancecareplanning.org.au |
Palliative care
Advance care planning sometimes forms part of palliative care. Palliative care is for people with a life-limiting illness. Sometimes called supportive care, it aims to maintain your quality of life by meeting physical, emotional, social, cultural and spiritual needs. Palliative care may be given at home, in a hospital, in a palliative care unit (which may also be called a hospice), in a residential aged care facility or through community-based palliative care providers.
For more information, see Understanding Palliative Care or visit Palliativecare.org.au
Useful websites
| Advanced Care Planning Australia |
| Cancer Australia |
| Services Australia |
| Palliative Care Australia |
| Queensland University of Technology’s End of Life Law in Australia |
Podcast: Living with Dying
Listen to more of our podcasts for people affected by cancer
More resources
Elena Schiena, Social Work – Clinical Lead, Peter MacCallum Cancer Centre, VIC; Tracey Bilson, Consumer; Tarishi Desai, Manager – Treatment and Supportive Care, McCabe Centre for Law & Cancer, VIC; Sarah Flynn, 13 11 20 Consultant, Cancer Council SA; Kim Greco, Lung Cancer Nurse Consultant, Flinders Medical Centre, SA; Dr Catherine Joyce, National Manager, Advance Care Planning Australia; Hall & Wilcox Lawyers; Linda Magann, CNC Palliative Care, St George Hospital, NSW; Joanna Page, Consumer; Brian Stace, Consumer; Dr Sabine Wardle, Senior Social Worker, Embrace Care Solutions and Charles Sturt University, NSW.
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