Looking ahead

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 or Advance Care Planning Australia’s conversation starters. 

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.

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.

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.

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.