Core Modules

module 4 | Activity 6: Advance care planning and goals of care

Advance care planning (as described in Module 1), is an ongoing process of reflection, discussion and communication that allows a person to make decisions about their future medical treatment and other care options while they are still competent and able to communicate their wishes. It should commence early in the person’s illness, preferably at diagnosis, and should be a routine part of clinical care.[1]

A person with a life-limiting illness can experience a decline in their functional status. This can compromise several dimensions, including:[2, 3]

Cognitive functioning For example, attention, concentration, memory and problem solving.
Behavioural functioning For example, undertaking daily activities (bathing, dressing, feeding) and instrumental activities (shopping, cooking and cleaning).
Psychological functioning For example, mood, affect, and motivation.
Social functioning For example, activities associated with roles at various stages of development.

This loss of function can reach a point where the person is no longer competent to make or communicate decisions about their care. When people lose the ability to make decisions about their care, an advance care plan ensures that their wishes remain the focus of decisions made about their care. This aids maintenance of self-determination, dignity and the avoidance of suffering – which helps to improve the quality of end-of-life care for the person and their family.[1, 4, 5]

Advance care planning can also involve a person making an Advance Care Directive – legal instructions that a person makes about their future healthcare if they lose capacity to make decisions. This can also involve formal appointment of a substitute decision maker for medical treatment decisions.[6]

Substitute decision maker

A substitute decision maker is a person who makes decisions about medical treatment for someone who does not have decision-making capacity. They are able to make decisions about most medical treatment choices including decisions about significant treatment options (such as whether life-sustaining treatment should be provided or withdrawn) in line with the person’s goals of care.[6, 7]

A person with capacity can choose their substitute decision maker by appointing them through formal documentation. Depending on the state or territory, they may be called:

  • Enduring guardian
  • Medical enduring power of attorney
  • An agent
  • A decision-maker.

The substitute decision maker should be:[1, 8]

  • Someone that the person trusts
  • Available (ideally living in the same city or region)
  • Over 18
  • Prepared to communicate clearly and confidently on the person’s behalf.

The substitute decision maker should be involved in all advance care planning conversations that the person has with their healthcare team. These discussions can be challenging especially as issues around dying and death emerge.[5, 9] To help guide these conversations it is important to: [1, 4, 5, 10, 11]

  • Ensure that end-of-life goals have been established
  • Provide a clear definition of advance care planning
  • Explain the benefits of advance care planning to the person and their family
  • Ensure that any caregiver who is making decisions in the future understands the advance care planning process and the person’s end-of-life goals
  • Encourage the person to consider:
    • the values that are important in their life
    • their treatment and care preferences
    • their current health and possible future health problems
    • what they would want from future medical care
    • their limitations [12]
  • Arrange a family meeting if required
  • Document discussions to ensure that all parties are aware.

Key national resources

Advance Care Planning Australia – about Advance Care Planning
The Advance Care Australia website contains validated resources for Advance Care Planning. Once within the site, click on your state or territory to learn more about Advance Care Planning within your jurisdiction.

End of Life Law
End of Life Law in Australia provides accurate, practical and relevant information to assist you in navigating the challenging legal issues that can arise with end-of-life decision-making. It is designed to be used by people with life-limiting illness, families, health and legal practitioners, the media, policymakers and the broader community to access information about Australian laws relating to death, dying and decision-making at the end of life.

Palliative Care Australia
Palliative Care Australia is the national peak body for palliative care and represents all those who work towards high quality palliative care for all Australians. Palliative Care Australia have a range of resources to assist with Advance Care Planning and Advance Care Directives.

Visit the Advance Care Planning Australia  and the End of Life Law in Australia websites. Review the relevant legislation in conjunction with specific legal implications for healthcare providers for your state or territory then answer the following questions:

  1. What are the steps that a person with a life-limiting illness would need to follow in order to participate in advance care planning in your state or territory?
  2. What are the implications of the legislation in your state or territory for you as a health professional?
  3. What options would a person have if they wanted to:
    • Specify their care preferences and wishes in advance
    • Appoint someone to act on their behalf if they became incapacitated
    • Appoint a substitute decision maker?
  4. How do you ensure an advance care plan is current and accessible?
  1. Advance Care Planning Australia. Advance Care Planning Australia. 2018  20 March 2018]; Available from: https://www.advancecareplanning.org.au/.
  2. Murray, S.A., et al., Illness trajectories and palliative care. BMJ, 2005. 330: p. 1007.
  3. Murray, S.A., et al., Palliative care from diagnosis to death. BMJ, 2017. 356.
  4. Therapeutic Guidelines Ltd, Advance Care Planning. 2018: Melbourne.
  5. RACGP. Practice Guides and Tools – Advance Care Planning. 2018  [cited 2018 June 17, 2018]; Available from: https://www.racgp.org.au/guidelines/advancecareplans.
  6. Australia Centre for Health Law Research. Legal Overview. 2017  [cited 2017 3 May]; Available from: https://end-of-life.qut.edu.au/legal-overview.
  7. Carter, R.Z., et al., Advance care planning in Australia: what does the law say? Aust Health Rev, 2015.
  8. Dening, K.H., Advance care planning and people with dementia. Advance Care Planning in End of Life Care, 2017: p. 93.
  9. Commonwealth of Australia. Planning for end of life. 2018  [cited 2018 June 17, 2018]; Available from: https://www.myagedcare.gov.au/end-life-care/planning-end-life.
  10. Queensland Health. 6 Step Advance Care Planning Process. 2017  [cited 2018 July 17, 2018]; Available from: https://www.health.qld.gov.au/__data/assets/pdf_file/0031/688261/acp-process.pdf.
  11. CareSearch. Advance Care Planning. Clinical Evidence 2017  November 3 2017]; Available from: https://www.caresearch.com.au/caresearch/tabid/450/Default.aspx.
  12. Advance Care Planning Australia and Austin Health. What is advance care planning? 2016  [cited 2017 3 May ]; Available from: https://static1.squarespace.com/static/588185f5ff7c50bd37534307/t/589cfb4dd482e9ffb14b85c5/1486682958637/ACP_Fact_sheets_for_patients_and_familys_type_logo.pdf.