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.
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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.
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.
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).
Tina Chivende, Social Worker, Cancer Psychosocial Service, Canberra Region Cancer Centre, ACT; Gabrielle Asprey, Telephone Support Group Facilitator, Cancer Council NSW; Dr Ben Britton, Senior Clinical and Health Psychologist, Calvary Mater Newcastle and John Hunter Hospital, and Conjoint Lecturer, School of Medicine and Public Health, University of Newcastle, NSW; Valmai Goodwin, Psychologist, Cancer Counselling Service, Cancer Council QLD; Karen Hall, 13 11 20 Consultant, Cancer Council SA; Zoe Mitchell, Senior Social Worker, Palliative Care, Fiona Stanley Hospital, WA; Amber Rose, Consumer; Carolina Simpson, Policy and Development Officer, Carers NSW.
View the Cancer Council NSW editorial policy.
Click below to download a PDF booklet on this topic.