Advance care planning
The process of advance care planning begins with a discussion about the person’s wishes for their future health care. Ideally, this conversation occurs early, when cancer is first diagnosed or even before. It does not mean that the person has given up or will die soon – many people review their wishes from time to time. Palliative Care Australia has developed a discussion starter resource to help people talk about the issues.
It is not unusual for a person’s wishes to change once they have been told the cancer is advanced. It is important that the person’s carer, close family members and health professionals understand how much treatment the person wants for the cancer, and what matters to them most when making treatment decisions. Palliative care teams are experienced with helping people through these difficult discussions about balancing the quality and length of life.
It can be confronting as a carer if the person you are caring for decides they do not want any more active 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 active treatment. You may find it helpful to talk to the palliative care team about how you are feeling.
Learn more about:
Listen to podcasts on Cancer Affects the Carer Too and How to Help Someone with Cancer
Different laws
Each state and territory has different laws related to advance care planning. For more information about the legal documents involved in NSW, call Cancer Council on 13 11 20 or download the Getting your affairs in order fact sheet from this page.
If you have questions, you can also call the Advance Care Planning Advisory Service on 1300 208 582, or visit advancecareplanning.org.au or palliativecare.org.au/advance-care-planning.
It is important to seek legal advice. Cancer Council’s Legal Referral Service can connect you with a lawyer and arrange free assistance for eligible clients. Call 13 11 20.
Legal arrangements
If the person hasn’t already done so, it is a good idea to make legal arrangements now to ensure their wishes are recorded. This can involve a number of legal documents.
For documents to be legally binding, the person needs to have capacity at the time of signing the document. Capacity includes the ability to understand the choices that are available and the consequences of decisions, as well as the ability to communicate choices. If there could be any doubt about the person’s capacity, it’s important to talk to both their doctor and their lawyer about this.
Document appointing a substitute decision-maker – The person with cancer can appoint someone to make decisions on their behalf if at some point in the future they can’t make their own decisions. These can include decisions about finances, property, medical care and lifestyle. This person is called a substitute decision-maker and is often also the primary carer, but that is not always the case. Sometimes the person with cancer will appoint different substitute decision-makers for financial decisions and medical decisions.
Depending on where you live, the documents for appointing substitute decision-makers may be known by different names (e.g. enduring power of attorney, enduring power of guardianship, appointment of enduring guardian) and cover different types of decisions (see the Different laws section above for where to find more information).
Advance care directive – Commonly called a “living will”, an advance care directive records a person’s wishes for their future medical care. It provides a record for doctors, family and carers to consider, and may be legally binding in some states and territories. Depending on where you live, the advance care directive may have a different name, such as a health direction, advance personal plan, advance health directive, or refusal of treatment certificate.
Preparing a will – This is a legal document that sets out what a person would like to do with their assets (estate) after they die. A will may also record the person’s wishes regarding guardianship of their children. Many people want to make a will or update the one they have as their circumstances change. 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 help you or contact the Public Trustee in your state or territory (visit publictrusteesaustralia.com for links).
Click on the icon below to download a PDF booklet on caring for someone with cancer
Instructions for downloading and reading EPUB files
Apple devices
The iBooks application must be installed on your Apple device before you can read the EPUB.
Different ways to download an EPUB file to your Apple device:
- email EPUB files to yourself and transfer the attachment to iBooks.
- copy EPUB files into DropBox (or a similar service) and use the DropBox app to send them to iBooks.
- open EPUB files directly from Mobile Safari and open them in iBooks, where they are saved automatically by downloading the EPUB from the website.
Need more help? Visit: http://support.apple.com/kb/HT4059
Kobo
To download an EPUB file to your Kobo from a Windows computer:
- download and save the EPUB directly onto your desktop.
- connect your Kobo to your computer using the USB cable and tap “Connect” on your eReader.
- select “Open folder to view files” to view the contents of your Kobo.
- navigate to where you have stored your EPUB file in “Finder”, in documents or downloads, and drag and drop it into the Kobo window. You can now disconnect your Kobo to read the eBook.
To download an EPUB to your Kobo from a Mac:
- download and save the EPUB directly onto your desktop.
- connect your Kobo to your computer using the USB cable and tap “Connect” on your eReader.
- open your “Finder” application.
- select “Kobo eReader” from the listed devices to view the contents of your Kobo.
- navigate to where you have stored your EPUB file in “Finder”, probably in documents or downloads, and drag and drop it into the Kobo window. You can now disconnect your Kobo to read the eBook.
Turn on your Kobo and your EPUB will be located in “eBooks”, while a PDF will be located in “Documents”.
Need more information? Visit: http://www.kobo.com/help/koboaura/response/?id=3784&type=3
Sony Reader
To download an EPUB file on your Sony Reader™:
- ensure you have already installed the Reader™ Library for PC/Mac software
- select the eBook you want from our website and click the link to download it.
- connect the Reader™ to your computer.
- open the Reader™ Library software and click “Library” in the left-hand pane and select the eBook to view it.
Need more help? Visit: https://au.readerstore.sony.com/apps_and_devices/
Amazon Kindle 2nd Generation devices
EPUB files can’t be read on the Amazon Kindle™. However, like most eReaders, Kindle™ 2nd Generation devices are able to display PDFs. We recommend that you download the PDF version of this booklet if you would like to read it on a Kindle™.
To transfer a PDF to your Kindle™ via USB cable from your computer or Mac:
- download the PDF directly onto your computer.
- connect the USB cable to your computer’s USB port, and the micro USB end of the cable to your Kindle™. Note: the Kindle™ won’t be available as a reading device while it is connected to your computer until it has been disconnected.
- open the Kindle™ drive and several folders will appear inside. The “Documents” folder is where you will need to copy or drag the PDF to.
- safely eject your Kindle™ from your computer and unplug the USB cable. Your content will appear on the Home Screen.
Kindle also provides a Kindle Personal Documents Service that allows users to send documents as an attachment directly to your eReader. For more information on this service, visit http://www.amazon.com/gp/help/customer/display.html/ref=help_search_1-1?ie=UTF8&nodeId=200767340&qid=1395967989&sr=1-1
For more information on accessing a PDF on your Kindle™, visit www.amazon.com/manageyourkindle, log in to your account and click on Personal Document Settings.
Need more help? Visit https://www.amazon.com/gp/help/customer/display.html?nodeId=200375630
Android and PC
You can also download and open eBooks on Android devices and PCs with appropriate apps or software installed. Suitable eReader apps for Android include Google Play Books, FBReader and Moon+ Reader. Suitable software for PCs include Calibre and Adobe Digital Editions.
This information was last reviewed in September 2017
Support services
Need legal and financial assistance?
Pro bono services, financial and legal assistance, and no interest loans
Support for carers
Cancer Council NSW offers carers support online, over the phone and in person and can link you to our practical support services
Cancer information
Advanced cancer
Information about cancer that has spread or come back
Practical concerns at the end of life
Getting affairs in order, organising paperwork and advance care planning
View our publications
Guides and fact sheets for people with cancer, their families and friends
