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 person 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 factsheet on advance care planning in residential aged care and in home care settings.
Advance Care Planning Australia (ACPA) and palliAGED have resources that can be downloaded and printed:
ACPA also has recommendations for those healthcare staff working in the community. Advance Care Planning Australia also has a telephone advisory service available to healthcare workers and to the community. The phone 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 Home Care toolkit.
The ELDAC Legal Toolkit provides additional resources in advance care planning.
Watch the ELDAC Home Care Toolkit educational video on Recognise End of Life, which also discusses advance care planning.
Dementia Australia (formerly Alzheimer’s Australia) has developed Start2Talk.This comprehensive resource can assist Australians to start a conversation and to become involved in planning ahead for the future in case they have a sudden accident, becomes very ill, or develops a condition such as dementia that affects memory and the ability to plan. Planning ahead can include issues related to finances, lifestyle or health care. It gives information needed to make decisions and put them into action.
The Cognitive Decline Partnership Centre at the University of Sydney 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 their families including brochures about decision-making which are also available in community languages.
Advance Care Planning Australia has information sheets specific to advance care planning. To assess these as audio translations in 15 languages click the Other Languages drop menu on the top banner of the home page.
Dementia Australia provides links to 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.
Some LGBTI people are not in close contact with their biological family, have no children, or have children who do not accept their life decisions. These factors can impact on their healthcare at critical times in their life. The Australian Department of Health has a report available in relation to palliative care for LGBTI people in Australia entitled The Exploratory Analysis of Barriers to Palliative Care: Issues Report on People who Identify as Lesbian, Gay, Bisexual, Transgender or Intersex (2019). The report describes recommendations for improving palliative care access and the quality of care for the LGBTI community. Key points on advance care planning are covered (pages 20-22), including barriers facing this group and enablers for change.
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.
An advance care plan is a written document to help the family or appointed decision maker accurately remember a person's medical choices. This makes it easier to communicate their wishes to doctors, nurses and other healthcare staff.
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