Advance care planning is a process of planning for future health and personal care whereby a person’s values, beliefs and preferences are identified so they can guide decision-making at a future time when the resident is unable to communicate their decisions.1
An advance care planning discussion will often result in an advance care plan. Advance care plans state preferences about health and personal care and preferred health outcomes. Decisions may be made on the person’s behalf, but a person’s wishes should be used to guide the decisions.
Advance Care Directives are one way of formally recording an advance care plan. An Advance Care Directive is a type of written advance care plan recognised by common law or authorised by legislation that is completed and signed by a competent adult. An Advance Care Directive can record the person’s preferences for future care and appoint a substitute decision-maker. A substitute decision-maker is a person identified by law as able to make substitute decisions on behalf of someone who does not have capacity to make decisions. There can be more than one substitute decision-maker appointed.
Advance care planning and advance care directives are governed by state and territory legislation. For advance care planning information specific to your state or territory, please visit the Advance Care Planning Australia (ACPA) website. ACPA also have animations and resources available that may assist in starting the conversation. Leading Aged Care Services (LASA) has a short video and an accompanying fact sheet on Advance Care Planning in residential aged care and home care settings.
Advance Care Planning Australia and palliAGED have resources that can be downloaded and printed:
Advance Care Planning Australia also have a telephone advisory service available to healthcare workers and the community. The telephone line 1300 208 582 operates Monday to Friday, 9.00am to 5.00pm.
To learn more about advance care planning check out the Advance Care Planning Australia (ACPA) free online training modules under the Education and Learning section of the Residential Aged Care toolkit.
The ELDAC End of Life Law Toolkit provides additional resources in advance care planning.
Watch the ELDAC Residential Aged Care Toolkit educational video on Recognise End of Life, which also discusses advance care planning.
Dementia Australia (formerly Alzheimer’s Australia) developed Start2Talk. This a comprehensive resource can assist Australians to start the conversations and to become involved in planning ahead for the future in case they have a sudden accident, become very ill, or develop a condition such as dementia that affects memory and the ability to plan. Planning ahead can include issues related to finances, lifestyle or healthcare. It gives information needed to make decisions and to put them into action.
The Cognitive Decline Partnership Centre at the University of Sydney has developed a quick guide (426kb pdf) based on the Start2Talk website with material to assist all adults to plan ahead. The Cognitive Decline Partnership Centre also offers a comprehensive list of resources on advance care planning for people with dementia and for their families including brochures about decision-making, which are also available in community languages.
Dementia Australia provides a list of resources on advance care planning specifically designed for Aboriginal and Torres Strait Islander Peoples and Aboriginal Health Workers. These are general advance care planning materials and not necessarily specific to dementia.
A report from the Australian Department of Health called Exploratory Analysis of Barriers to Palliative Care – Issues Report on Aboriginal and Torres Strait Islander Peoples describes key barriers and promising approaches for improving Aboriginal and Torres Strait Islander peoples’ experience of palliative care in Australia. It covers advance care planning and ways the palliative care sector can improve access and quality of care for this group.
The Dying to Talk discussion starter website was designed by Palliative Care Australia (PCA) to help people to begin the conversation about how they want to be cared for and what their wishes and preferences are for their end of life. There is a version designed for Aboriginal and Torres Strait Islander communities, including a downloadable booklet and online card game to facilitate the conversation.
Forms and requirements for writing advance care plans and appointing substitute decision-makers vary between and states and territories. Advance Care Planning Australia provides information for Australian states and territories.
ACPA has comprehensive resources on advance care planning and has designated sections for individuals and family, friends and carers.
Family, Friends and Carers:
Page updated 29 June 2020