Advance care planning is a process where a person makes known, to their family and healthcare team, what is important to them, and what they have decided about future care. Advance care planning is a routine part of a person’s healthcare.[1] It assists with planning future health treatment and healthcare needs through the identification of goals of care.[2, 3]
Advance care planning is an ongoing process of reflection, discussion and communication that allows a person to make decisions about their future care now while they are still competent and able to communicate these wishes. In the future, if the person is not able to make decisions for themselves, or cannot communicate, their advance care plan guides their family and healthcare team in making decisions about ongoing care.[1]
Advance care planning should commence early in the person’s illness, preferably at diagnosis, and should be a part of routine clinical care.[2-3] Early discussion is important so that the person’s wishes are respected at a time when they can no longer voice these decisions. This can lead to a better end-of-life experience for everyone involved.[1, 6-8] 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, 5-7]
- 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 s a legally-binding document that formalises a person’s advance care plan in a written form or statement. It 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:[8]
- Living will
- Advance health directive
- Advance directive
- Refusal of Treatment Certificate
- Advance personal plan
- Health direction.
The Advance Care Directive allows a person with capacity to record their decisions and share their preferences, values or preferred outcomes about their future care and medical treatment. An Advance Care Directive can also formally appoint a substitute decision-maker for medical treatment decisions. [1, 9] 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 information about advance care planning for the general public.
- End of Life Directions for Aged Care (ELDAC) – End of Life Law Toolkit: The ELDAC project aims to improve the care of older Australians. Provides practical information about the law at end of life for the aged care sector. It contains useful resources on end of life legal issues commonly encountered in aged care.
- End of Life Law in Australia – State and Territory Laws: Find out more about laws regarding substitute decision-makers in each state and territory.
- Palliative Care Australia – Discussion Starter Resources: Find a range of resources to help in starting a conversation about what’s important to people when they are facing a life-limiting illness.
Thinking Points
- How can an advance care plan help William and his family?
- Who guides the creation of the advance care plan?
- What information should be included in William’s advance care plan?
References
- Advance Care Planning Australia. 2024. Advance Care Planning Australia.
- Sudore, R.L., et al., 2017. Defining Advance Care Planning for Adults: A Consensus Definition from a Multidisciplinary Delphi Panel. Journal of pain and symptom management, 53(5): p. 821-832.e1.
- Butler, M., et al., 2014. Decision aids for advance care planning: an overview of the state of the science. Ann Intern Med, 161(6): p. 408-18.
- CareSearch. 2021. Advance Care Planning. Clinical Evidence Summary
- Murray, S.A., et al., 2017. Palliative care from diagnosis to death. BMJ, 356.
- Thomas, K. 2018. Principles and materials for The Gold Standards Framework.
- Thomas, K., B. Lobo, and K. Detering, 2017. Advance care planning in end of life care. 2017: Oxford University Press.
- Australia Centre for Health Law Research. 2020. End of life law in Australia – About this website: Glossary.
- Australia Centre for Health Law Research. 2024. End of life law in Australia – Legal Overview.