- Cancer Information
- Supporting someone with cancer
- Caring for someone with advanced cancer
- Looking ahead
Now is the time to encourage the person with advanced cancer to sort out legal arrangements and talk about their treatment preferences and values with family, friends and the health care team.
Learn more about
- Advance care planning
- Preparing legal documents
- Appointing a substitute decision-maker
- Making an advance care directive
- Preparing a will
- Voluntary assisted dying
Advance care planning
Advance care planning is when a person thinks about their future health care and discusses their preferences with their carer, family, friends and health care team. This may take several discussions and can involve:
- talking with the person with cancer about what is important to them for quality of life and what matters most when making treatment decisions
- discussing the treatments the person with cancer may or may not want
- preparing legal documents, including appointing a substitute decision-maker and making an advance care directive.
Studies show that families of people who have done advance care planning feel less anxiety and stress when asked to make important health decisions for others.
Starting the conversation
Although advance care planning is often done when people are first diagnosed with cancer, it can be started at any time, whether the person is healthy or ill. Discussing the person’s wishes does not mean they have given up hope or will die soon – their needs may change over time and it is a good idea to regularly review the plan.
If you need some tips on starting the conversation, you might like to use one of Palliative Care Australia’s discussion starters at dyingtotalk.org.au/discussion-starters or Advance Care Planning Australia’s conversation starters at advancecareplanning.org.au.
How you might feel
It can be confronting as a carer if the person you are caring for decides they do not want any more treatment for the cancer. On the other hand, you may worry about the impact on their quality of life if they decide to keep pursuing treatment, even if it may not benefit them. You may find it helpful to talk to the palliative care team about how you are feeling.
Advance care planning laws across Australia
Each state and territory has different laws about what capacity means, making advance care directives and appointing substitute decision- makers. To find out more, talk to a lawyer, call Advance Care Planning Australia on 1300 208 582.
When preparing legal documents, it is important to seek legal advice. Cancer Council may be able to connect the person you are caring for with a lawyer.
To find out more about what legal documents are needed where you live, call Cancer Council 13 11 20 or see Getting your affairs in order.
Preparing legal documents
If the person hasn’t already done so, now is a good time to appoint a substitute decision-maker, make an advance care directive and prepare a will. These legal documents ensure that the person’s wishes are recorded.
For these documents to be legally binding, the person needs to have decision-making capacity at the time of making the document. In general, this means the person can understand and remember information about the available choices, understand the consequences of their decisions, and communicate their decisions.
For more information, talk to your lawyer and doctor, or visit End of Life Law in Australia.
Appointing a substitute decision-maker
The person with cancer can appoint someone to make medical decisions on their behalf if they become too unwell (lose capacity) to make their own decisions. This person is called a substitute decision-maker, and they may be a person’s spouse or family member, or someone else the person trusts. Depending on your state or territory, the documents used to appoint a substitute decision-maker may be called by different names, such as enduring power of attorney or appointment of enduring guardian.
If the person has not appointed a substitute decision-maker, the law in each state or territory outlines who may make medical treatment decisions on their behalf. This is usually someone close to them, such as a spouse or partner, family member or close friend. If you are unsure if you have the right to make treatment decisions on the person’s behalf, talk to the treatment team or a lawyer.
Making an advance care directive
An advance care directive is a written record of a person’s values and preferences for any future medical care. It is ideal if the advance care directive can be as detailed as possible so that their preferences are clear. An advance care directive is legally binding and can be used by doctors, family members and carers to guide their decision-making. Depending on where you live, the advance care directive may be called an advance health directive, advance personal plan or similar.
Once the document has been signed, dated and witnessed, the person you are caring for may ask you to share copies with the substitute decision-maker (if that is not you) and the treatment team, so it can be placed on their medical record. A copy can also be saved to the person’s My Health Record – find out more at digitalhealth.gov.au. You may also want to take witnessed copies with you to appointments.
Preparing a will
A will is a legal document that sets out what a person wants to happen to their assets after they die. These assets, called an estate, may include a house, land, savings or investments. A will can also record the person’s wishes regarding who will look after their children (guardianship).
Many people want to make a will or update the one they have as their situation changes. Some carers choose to make or update their own will at the same time as the person with advanced cancer. This can help to make it feel like a normal, everyday process.
Making a will is not difficult, but it needs to be prepared and written in the right way to be legally valid. It is best to ask a lawyer to advise you or contact the Public Trustee in your state or territory.
Voluntary assisted dying
Voluntary assisted dying (VAD) is when a person with an incurable, life-limiting condition or illness chooses to end their life with the assistance of a doctor or health practitioner – using specially prescribed medicines from a doctor.
At the time of going to print (November 2023), VAD laws have commenced operation in all states of Australia. VAD remains illegal in the Australian Capital Territory and Northern Territory, although the laws are under review. For information and updates on VAD for your state or territory, visit Queensland University of Technology’s End of Life Law in Australia.
VAD may be an option for some people who meet all the strict conditions and follow certain steps as required by the laws in their state.
“Voluntary” means that it is the choice of the unwell person to end their life. You cannot ask for VAD on their behalf or pressure them to ask for it; only they can ask for it and they must have decision-making capacity.
You may have a range of emotional responses if the person you are caring for chooses to investigate VAD. You may find it confronting if they choose to proceed with VAD, and it is important that you look after your own emotional wellbeing.
The person may also ask you to be present when they end their life, and it is important to think about how you might feel. It is your choice whether to be involved in the VAD process. You may find it helpful to get support from your GP or a counsellor.
For more details, visit the Health Department website in your state.
Podcast: Caring for Someone with Advanced Cancer
Dr Alison White, Palliative Medicine Specialist, Royal Perth Hospital, WA; Tracey Bilson, Consumer; Louise Dillon, Consumer; Louise Durham, Nurse Practitioner, Palliative Care Outpatients, Princess Alexandra Hospital, QLD; Katrina Elias, Carers Program, South Western Sydney Local Health District, NSW Health, NSW; Jessica Elliott, Social Worker, Youth Cancer Services, Crown Princess Mary Cancer Centre, Westmead Hospital, NSW; Brendan Myhill, Social Worker and Bereavement Research Officer, Concord Repatriation General Hospital, NSW; Penny Neller, Project Coordinator, National Palliative Care Projects, Australian Centre for Health Law Research, Queensland University of Technology, QLD; Olivia Palac, Acting Assistant Director, Occupational Therapy, Gold Coast University Hospital, QLD; Nicole Rampton, Advanced Occupational Therapist, Cancer Services, Gold Coast University Hospital, QLD; Shirley Roberts, Nurse Consultant, Medical Oncology, Northern Adelaide Cancer Centre, SA; Dr Elysia Thornton-Benko, Specialist General Practitioner, and UNSW Research Fellow, NSW; Kathleen Wilkins, Consumer; Helen Zahra, Carers Program, South Western Sydney Local Health District, NSW Health, NSW.
View the Cancer Council NSW editorial policy.