Core Modules

module 1 | Activity 10: Advance care planning

Advance care planning is a routine part of a person’s healthcare.[1] It assists with planning future medical treatment and healthcare needs through the identification of goals of care.[2, 3] Many people do not like talking about end-of-life issues.[4] Advance care planning 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 now while they are still competent and able to communicate these wishes.[4-6]

Advance care planning should commence early in the person’s illness, preferably at diagnosis, and should be a part of routine clinical care.[6] Early discussion is important so that the person’s wishes are respected at a time when they can no longer voice these decisions.[3] This can lead to a better end-of-life experience for everyone involved.[1, 4, 6-9] A person must have the capacity to make decisions in order to make an advance care plan or to choose a substitute decision-maker.[1]

A person with capacity should:[1]

  • Know the decision facing them
  • Understand and retain the possible options available as well as their outcomes
  • Use or weigh up the information
  • Communicate their decision.

An effective advance care plan:[1, 5, 6, 10, 11]

  • Outlines how to manage pain and other symptoms
  • Describes how to provide cultural, emotional and spiritual support
  • Details which treatments will be included in the overall care plan and which ones will not
  • Helps family members make decisions about care options
  • Helps everyone involved – healthcare workers, family and carers know what to expect at different stages of the illness
  • Describes how to support families and carers through the bereavement process.

If the person retains capacity, they may participate in decision-making directly. Loss of capacity is the trigger to act on an advance care plan.[1]

Advance Care Directives

Advance care planning can also involve a person making an Advance Care Directive. An Advance Care Directive is the instruction that a person makes about their future medical treatment or healthcare in the event that they lose capacity to make decisions. Depending on your state or territory, an Advance Care Directive is referred to as a:[12]

  • Living will
  • Advance health directive
  • Advance directive
  • Refusal of Treatment Certificate
  • Advance personal plan
  • Health direction.

The Advance Care Directive is a legally binding statement or document that allows a person with capacity to record their decisions and share their preferences, values or preferred outcomes about their future care and medical treatment.[1, 13] An Advance Care Directive can also formally appoint a substitute decision-maker for medical treatment decisions. This topic is covered in further detail in PCC4U Module 4: Optimising function in palliative care.

Additional Resources

Advance Care Planning Australia – about Advance Care Planning
The Advance Care Planning 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.

Advance Care Planning Australia – Consumer Information
In addition to clinical information, the Advance Care Planning Australia contains a range of frequently asked questions and information about advance care planning for the general public.

End of Life Directions for Aged Care (ELDAC)
The ELDAC project aims to improve the care of older Australians. Health professionals and aged care workers can access information, guidance and resources to support palliative care and advance care planning for older people and their families.

  1. How can an advance care plan help William and his family?
  2. Who guides the creation of the advance care plan?
  3. What information should be included in William’s advance care plan?
  1. Advance Care Planning Australia. Advance Care Planning Australia. 2018  [cited 2018 March 20]; Available from: https://www.advancecareplanning.org.au/.
  2. Sudore, R.L., et al., Defining Advance Care Planning for Adults: A Consensus Definition from a Multidisciplinary Delphi Panel. Journal of pain and symptom management, 2017. 53(5): p. 821-832.e1.
  3. Butler, M., et al., Decision aids for advance care planning: an overview of the state of the science. Ann Intern Med, 2014. 161(6): p. 408-18.
  4. Commonwealth of Australia. Planning for end of life. 2018  [cited 2018 June 17]; Available from: https://www.myagedcare.gov.au/end-life-care/planning-end-life.
  5. Mullick, A., J. Martin, and L. Sallnow, An introduction to advance care planning in practice. BMJ : British Medical Journal, 2013. 347.
  6. CareSearch. Advance Care Planning. Clinical Evidence 2017  [cited 2019 Febraury 18]; Available from: https://www.caresearch.com.au/caresearch/tabid/450/Default.aspx.
  7. Murray, S.A., et al., Palliative care from diagnosis to death. BMJ, 2017. 356.
  8. Thomas, K. Principles and materials for The Gold Standards Framework. 2018  [cited 2018 July 24]; Available from: http://www.goldstandardsframework.org.uk/.
  9. Thomas, K., B. Lobo, and K. Detering, Advance care planning in end of life care. 2017: Oxford University Press.
  10. Advance Care Planning Australia and Austin Health. What is advance care planning? 2016  [cited 2017 May 3]; Available from: https://static1.squarespace.com/static/588185f5ff7c50bd37534307/t/589cfb4dd482e9ffb14b85c5/1486682958637/ACP_Fact_sheets_for_patients_and_familys_type_logo.pdf.
  11. Detering, K. and J. Clayton, Advance care planning in Australia. Advance Care Planning in End of Life Care, 2017: p. 195.
  12. Australia Centre for Health Law Research. About this website: Glossary. 2017  [April 2018]; Available from: https://end-of-life.qut.edu.au/about/glossary.
  13. Australia Centre for Health Law Research. Legal Overview. 2017  [cited 2017 May 3]; Available from: https://end-of-life.qut.edu.au/legal-overview.