Living with Advanced Cancer
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Living with Advanced Cancer
This section explains the practical, medical and legal issues to consider when you’re told the cancer is advanced.
Finding all your personal, financial and legal paperwork and deciding what to do can be difficult. However, planning ahead is important whether you have a serious illness or not. 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.
Organising your paperwork
It’s helpful to have all of your paperwork up to date and in one secure place. This will make it easier if a family member or friend has to help you with financial and legal matters.
Important documents to get together might include:
- birth, marriage or divorce certificates
- bank and credit card information, passwords
- investment details (e.g. shares, funds)
- Centrelink and Medicare details
- superannuation and insurance information
- house title/lease documents
- loan details (e.g. house, car)
- document appointing a substitute decision-maker
- advance care directive
- funeral information.
Discuss your legal arrangements with your family, and let someone know how to contact your lawyer.
There are many different types of costs that can add up during diagnosis and treatment. If you are struggling financially, 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.
Accessing superannuation early
In Australia, you need to be at least 55 years old and retired before you are allowed to access your superannuation (super). However, you can apply to access your super early under particular circumstances:
- on compassionate grounds to pay for medical treatment
- if you’re facing severe financial hardship
- if you’re diagnosed with a terminal illness – you may need to provide supporting documentation.
To access your super early, visit the Australian Taxation Office (ATO) website or call them on 13 10 20, or contact your super fund. 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 super. Many industry super funds, as well as some retail funds, offer insurance by default. In many cases, 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.
It can be a good idea 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 is called advance care planning, and it helps ensure that your family and health care team will make decisions that respect your treatment preferences when you are unable to communicate your wishes.
Advance care planning involves:
- appointing a substitute decision-maker
- completing an advance care directive.
Your advance care documents 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 documents. You need to be an adult and have capacity to complete advance care documents.
Advance care planning doesn’t mean that you have given up or will die soon – it gives you the security to know that you have planned for the worst and that you can now focus on treatment and living. It only comes into effect if you are unable to make decisions for yourself.
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 other people.
Each state or territory has different laws about advance care directives and substitute decision-makers. To find out more, visit Advance Care Planning Australia or call 1300 208 582. You can also seek independent legal advice.
Steps in advance care planning
Talk to others
Use one of the following guides to reflect on your preferences and discuss your choices with family and friends:
- Advance Care Planning Australia’s conversation starters
- Palliative Care Australia’s discussion starter
Record your treatment goals
For information relevant to your state or territory, visit Advance Care Planning Australia.
Documents must include the following details:
- names and contact details of your substitute decision-maker
- outline of treatments, care or services that you do or do not want
- signature and date for both you and your witness.
- Share copies of your advance care documents with your GP, oncologist, palliative care team, substitute decisionmaker, 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 and update them whenever your wishes change.
If you have not already done so, now is the time to think about making a will, appointing a substitute decision-maker, and preparing an advance care directive.
For any of these documents to be legally binding, you need to have capacity at the time of signing the document. Having capacity means you are able to understand the choices that are available and the consequences of your decisions, and are able to communicate your choices. For more information, talk to your doctor and lawyer.
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 help you or South Australians can contact the Public Trustee. You can also visit Cancer Council’s Legal Referral Service and call 13 11 20 for more information.
When you die without a will, you are said to die intestate. Your assets are distributed to family members according to a formula provided by the law. Although any will can be challenged in court, having a valid will usually means your assets will go to the people of your choice, avoids extra expenses, and simplifies the process for your family.
Appointing a substitute decision-maker
You can appoint someone to make medical decisions for you if in the future you lose capacity to make these decisions yourself. These can include decisions about your medical care and treatment. This person is called a substitute decision-maker. They should be someone you trust and who understands your values and wishes for future care.
Depending on where you live, the documents for appointing this person may be known as an enduring power of attorney, enduring power of guardianship, or appointment of a medical treatment decision maker.
Making an advance care directive
A written record of your goals and instructions for future medical care is called an advance care directive. Depending on where you live, the document may also be known as an advance health directive or advance personal plan. South Australians can download the forms here. You may need the help of your doctor or family to complete the form and ensure it is signed, dated and witnessed.
Generally, these documents are legally binding and should inform your doctors, family and carers if they need to make medical decisions for you. If your needs change, you can choose to revise or replace your advance care directive. Ask your doctor or hospital to place your directive on your medical record. You can also save it online to your My Health Record.
Voluntary assisted dying
Voluntary assisted dying is when a person with an incurable condition or illness chooses to end their life and uses medicines specially prescribed by a health practitioner. “Voluntary” means it is the choice of the person to end their life.
Voluntary assisted dying is not part of palliative care.
As of August 2021, voluntary assisted dying is illegal in most Australian states and territories. In Victoria and Western Australia, voluntary assisted dying is legal only for people who meet all the strict conditions and follow certain steps. Visit health.vic.gov.au or health.wa.gov.au and search for “voluntary assisted dying” to find out more about the law in these states.
Voluntary assisted dying laws have been passed in Tasmania and South Australia, and voluntary assisted dying is likely to start in late 2022.
The laws in some other states and territories are under review.
For more information and updates, visit end-of-life.qut.edu.au/euthanasia.
Palliative care and end-of-life services are widely available in Australia. These services can help maintain comfort and quality of life throughout advanced cancer.
Some people may want to plan their own funeral, 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 should follow the directions in your will, but is not 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 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. For more information on pre-planning a funeral visit the Australian Funeral Directors Association. It’s important to let your family know of any arrangements you have made. Copies of a prepaid funeral contract should be provided 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 2019 by the following expert content reviewers: Prof Nicholas Glasgow, Head, Calvary Palliative and End of Life Care Research Institute, ACT; Kathryn Bennett, Nurse Practitioner, Eastern Palliative Care Association Inc., VIC; Dr Maria Ftanou, Head, Clinical Psychology, Peter MacCallum Cancer Centre, and Research Fellow, Melbourne School of Population and Global Health, The University of Melbourne, VIC; Erin Ireland, Legal Counsel, Cancer Council NSW; Nikki Johnston, Palliative Care Nurse Practitioner, Clare Holland House, Calvary Public Hospital Bruce, ACT; Judy Margolis, Consumer; Linda Nolte, Program Director, Advance Care Planning Australia; Kate ReedCox, Nurse Practitioner, National Clinical Advisor, Palliative Care Australia; Helena Rodi, Project Manager, Advance Care Planning Australia; Kaitlyn Thorne, Coordinator Cancer Support, 13 11 20, Cancer Council Queensland.