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.

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.

→ READ MORE: Caring at the end of life

Podcast: Caring for Someone with Advanced Cancer

Listen to more of our podcast for people affected by advanced cancer