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Looking ahead

This section explains the practical, medical and legal issues to consider when you’re told the cancer is advanced. Organising personal, financial and legal paperwork and making decisions about the future is hard. But planning ahead is important whether you have a serious illness or not.

Sorting out paperwork and getting your affairs in order can help you feel more in control of your life and what the future holds, bring a sense of relief, and allow you to focus on treatment and living.

Dealing with bills and debts

There are many different types of costs that can add up during diagnosis and treatment. If you are concerned about money, this can add to the worry and stress of being diagnosed with advanced cancer.

Ask your doctor whether there are ways to reduce your treatment costs. They can also refer you to a social worker for advice. Depending on your circumstances, you may need to consider ways to manage the financial impact of advanced cancer.

Making payment arrangements

If you are having difficulty paying your utility bills, such as electricity, gas, water, phone or internet, contact your provider. You may be able to access flexible payment arrangements, discounts, rebates or concessions through their hardship program. Check with the hospital social worker whether other options are available in your state or territory. You can visit the National Debt Helpline or call them on 1800 007 007 for free financial counselling and advice.

Organising your paperwork

Keeping paperwork up to date and in one secure place will make it easier if someone needs to help you with money or legal matters. Discuss your legal arrangements with your family, and let them know how to contact your lawyer. If you have an Advance Care Directive, give a copy to your health care team so they know about any decisions you have made.

Documents to get together include:

  • social media login and passwords
  • birth, marriage/divorce certificates
  • bank and credit card details and passwords
  • investment information (e.g. shares)
  • Centrelink and Medicare details
  • superannuation and insurance
  • house title/lease
  • loan details (e.g. house, car)
  • passport
  • will
  • documents appointing substitute decision-maker/power of attorney
  • Advance Care Directive
  • funeral information

Accessing superannuation early

In Australia, you can access your superannuation (super) if you are 65 years old or if you have retired (depending on your age). You can also apply to access your super early in particular circumstances including:

  • on compassionate grounds, including to pay for medical treatment
  • if you are facing severe financial hardship
  • if you are diagnosed with a life-limiting illness – you may need to provide supporting documentation, which your doctor can arrange.

You can apply to access your super early through your super fund or the Australian Taxation Office (ATO).

Cancer Council’s Legal and Financial Referral Service may be able to connect you with a professional who can help Call 13 11 20 for more information.

Check your insurance

People often don’t realise that they may have insurance attached to their superannuation. Many super funds may offer insurance by default – so you will be covered as long as you did not choose to opt out.

Types of insurance provided through super funds can include income protection, total and permanent disability, and life insurance (may be called death cover).

To find out whether you have insurance through your super or how accessing your super early will affect your insurance entitlements, talk to your super fund and insurer, or to a financial planner.

Advance care planning

It can be a good idea to take some time to plan for your future medical treatment and care, and to discuss your preferences and values with your family, friends and health care team. This process of discussing future care and preparing any necessary documents is called advance care planning. It ensures that your family and health care team know and respect your treatment wishes if you can’t make decisions for yourself (also called losing decision-making capacity) or if you are unable to communicate your wishes for any reason. As well as giving you peace of mind, 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 them.

Advance care planning can involve:

  • talking and making decisions about what is important to you for quality of life
  • discussing what treatments you may or may not want, including where you want to receive care (e.g. at home if possible)
  • completing an Advance Care Directive
  • appointing a substitute decision-maker.

Advance care planning may be confronting, but it doesn’t mean that you have given up or will die soon – the process gives you the security to know that you have formalised plans for the future, and that you can now focus on treatment and living.

Any advance care planning documents you make can be as simple or as detailed as you like. If you have religious, spiritual or cultural beliefs that may affect your health care decisions, you can record these in your advance care planning documents.

In all States and Territories except the ACT, Advance Care Directives are only used if there comes a time when you can’t make decisions for yourself.  You need to be able to make clear decisions (have capacity) to complete an Advance Care Directive, as it is a legal document.

You can change an Advance Care Directive at any time.

To find out more, visit Advance Care Planning Australia or call 1300 208 582.  You can also get independent legal advice. Call Cancer Council on 13 11 20 if you feel anxious about planning.

Steps in advance care planning

Talk to others
Use one of the following guides to help you think about your preferences and discuss them with family and friends:

It may also be helpful to talk to your doctor about the kinds of choices that may need to be made in the future.

Record your treatment goals
Many hospitals have their own forms for you to use. If not, you can find information relevant to your state or territory at Advance Care Planning Australia. Documents must include:

  • names and contact details of your substitute decision-maker
  • outline of treatments, care or services that you do or do not want
  • a signature and date for both you and your witness.

Make copies

  • Share copies of your advance care documents with your GP, oncologist, palliative care team, substitute decision-maker, hospital and family or friends.
  • Ask your doctor or hospital to include the plan in your medical record.
  • Save it online to your My Health Record.
  • Review the documents regularly – yearly is a good idea- and update them whenever your wishes change.

Preparing legal documents

If you have not already done so, now is the time to think about appointing a substitute decision-maker, preparing an Advance Care Directive and making a will. For any of these documents to be legally binding, you need to have decision-making capacity at the time of making the document. In general, having capacity means you are able to understand the choices that are available and the consequences of your decisions, and that you can communicate these choices. For more information, talk to your doctor or a lawyer. Each state and territory has different laws about what having capacity officially means, making Advance Care Directives and appointing substitute decision-makers.

Making an Advance Care Directive

The written record of your goals, values and treatment preferences, and instructions for any future medical care is called an Advance Care Directive. It is legally binding and used by your doctors, family and carers if they need to make decisions on your behalf.

Depending on where you live, this document may also be known as an Advance Health Directive, Health Direction or an Advance Personal Plan. You can download and save, or print out the form specific for your state or territory from Advance Care Planning Australia. You may need the help of your doctor or lawyer to complete the form and make sure it’s signed, dated and witnessed. Some hospitals use their own forms.

If your needs change, you can choose to revise or replace your Advance Care Directive. Ask your doctor or hospital to add your Directive to your  medical record. You can also save it online at My Health Record. For more information, see Advance Care Planning Australia.

Appointing a substitute decision-maker

You can appoint someone to make legal, financial and/or medical decisions on your behalf, if you lose capacity to make these decisions yourself. This person is called a substitute decision-maker. Your substitute decision-maker should be someone you trust and who understands your values and what you want for any future care. They do not necessarily have to be a family member. Depending on where you live, different documents are required to appoint a substitute decision-maker.

If you cannot make decisions for yourself (lose capacity), and do not have an Advance Care Directive or an appointed substitute decision-maker, the law in each state and territory outlines who may make medical treatment decisions for you. This is usually someone close to you, such as your spouse or partner, family member or close friend. For more information about who may make treatment decisions for you, visit End of Life Law in Australia.

Making a will

A will is a legal document that sets out what you want to happen to your assets after you die. These assets are called your estate and may include your house, land, car, bank accounts, jewellery, clothes, household goods or investments. A will can also record your wishes regarding guardianship plans for any children.

Making a will is not difficult but it needs to be prepared and written in the right way to be legally valid. A will should be reviewed and updated as circumstances change. It is best to ask a lawyer to advise you, or contact the Public Trustee in your state or territory.

Cancer Council may be able to connect you with a lawyer to help you prepare a will. For more information, call 13 11 20.

If you die without a will, you are said to die intestate. Your assets – such as your house, money and belongings – are distributed to family members according to a formula provided by law. Although any will can be challenged in court, having a valid will usually means that your assets will go to the people of your choice, avoids extra expenses, and simplifies the process for your family.

Voluntary assisted dying

Voluntary assisted dying is when a person with an incurable condition or illness chooses to end their life with the assistance of a doctor or health practitioner – using specially prescribed medicines from a doctor. “Voluntary” means that it is the choice of the unwell person to end their life.

Voluntary assisted dying is only available to people who meet all the strict conditions and follow certain steps as required by the laws in their state. It is essential to check the latest updates and know if this choice is legal in the state or territory where you live.

At the time of last review of this section (November 2022), laws around voluntary assisted dying have been passed in all six states. However, they may not have come into effect in your state, meaning that it still may not be legal to participate in voluntary assisted dying yet.

Voluntary assisted dying laws have commenced operation in Victoria, Western Australia and Tasmania.

Voluntary assisted dying commences in Queensland, New South Wales and South Australia from specific dates in 2023.

For current information and updates for your specific state or territory, visit Queensland University of Technology’s End of Life Law in Australia.

The laws in the Northern Territory and ACT were under review at our last review (November 2022).

Making a funeral plan

Having advanced cancer can mean thinking about things you might not have thought about otherwise – like making a will or even how you would want your life to be celebrated. Some people may want to think about what they want for their funeral, while others may not.

If you want to plan your funeral, you could discuss your wishes with your family and friends, lodge a plan with the funeral director of your choice or record your wishes in your will. The executor is the name for the person you appoint to carry out the wishes left in your will. They should follow the directions in your will, but they are not legally bound to do so.

You can personalise your funeral to suit your cultural or spiritual beliefs. You may have just a few simple requests for music you want played or poems you’d like read, or you may have lots of ideas for the full service. You can also choose not to have a funeral at all or to have a non-traditional event such as a celebration of life. If you change your mind, you can alter these arrangements at any time.

To prearrange or prepay a funeral, talk to a funeral director. You can download a pre-planning information form from the Australian Funeral Directors Association or Funeral Directors Australia. It’s important to let your family know of any  arrangements like this that you have made. Copies of a prepaid funeral contract should be given to members of your family or filed with your will.

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This information is reviewed by

This information was last reviewed December 2022 by the following expert content reviewers: Dr Lucy Gately, Medical Oncologist, Alfred Health and Walter and Eliza Institute for Medical Research, VIC; Dr Katherine Allsopp, Supportive and Palliative Care Specialist, Westmead Hospital, NSW; A/Prof Megan Best, The University of Notre Dame Australia and The University of Sydney, NSW; Dr Keiron Bradley, Palliative Care Consultant, Medical Director Palliative Care Program, Bethesda Health Care, WA; Craig Brewer, Consumer; Emeritus Professor Phyllis Butow, Psychologist, The University of Sydney and Chris O’Brien Lifehouse, NSW; Louise Durham, Palliative Care Nurse Practitioner Outpatients, Princess Alexandra Hospital, Metro South Palliative Care, QLD; Dr Roya Merie, Radiation Oncologist, ICON Cancer Centre, Concord, NSW; Penny Neller, Project Coordinator, National Palliative Care Projects, Australian Centre for Health Law Research, Queensland University of Technology, QLD; Caitriona Nienaber, 13 11 20 Consultant, Cancer Council WA; Xanthe Sansome, Program Director, Advance Care Planning Australia, VIC; Sparke Helmore Lawyers; Peter Spolc, Consumer.

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