What do I need to know about advance care planning?

Advance care planning is routine care

Advance care planning is a process where a person discusses their values and healthcare preferences with their family, friends and healthcare team.

Care workers, general practitioners and general practice nurses can help a person make informed decisions for their future care. A person may ask you for help in making an advance care plan, or you may want to start the conversation with them.

Broadly speaking, advance care planning treatment decisions have to be based on the informed consent of people and their families, supported by medical professionals.

The goal is to provide clear and documented preferences about a person's future medical treatment. It is essential to person-centred care and is an ongoing process.

Advance care planning is a process where a person discusses their values and healthcare preferences with their family, friends and healthcare team.

Ideally, advance care planning will result in a formal, written Advance Care Directive (values and/or instructional), to help ensure the person’s preferences are respected.

If the person at some point in time is not able to make decisions for themselves, or cannot communicate, their Advance Care Directive guides the person's family and doctors in making treatment decisions. An Advance Care Directive is only used when the person loses capacity to make or express their preferences.

As a part of their Advance Care Directive, a person can choose a 'substitute decision-maker', who would make decisions for the person if they were not able to communicate.

Medical technology has evolved - most often to the great benefit of people. Yet such evolution also brings the ability to keep people alive using treatments that are potentially burdensome and invasive. There may be times when life-prolonging treatments are just not appropriate. 

In some circumstances, treatment may extend a person’s life or merely prolong the dying process. Given the choice, a person might not have preferred to have received a treatment. In circumstances such as these, the concept of recording preferences about medical treatment in advance developed.

Advance care planning benefits the person, their family, carers, health professionals and associated organisations.

  • It helps to ensure people receive care that is consistent with their beliefs, values, attitudes and preferences.
  • It improves ongoing and end-of-life care, along with personal and family satisfaction. 1
  • Families of people who have an advance care plan experience less anxiety, depression, stress and are more satisfied with care. 1
  • For healthcare professionals and organisations, it reduces futile transfers to acute care and unwanted interventions. 2

References
1. Detering, KM, Hancock, AD, Reade, MC, Silvester, W 2010, ‘The impact of advance care planning on end of life care in elderly patients: randomised controlled trial’, British Medical Journal, 340: c1345.doi:10.1136.
2. Brinkman-Stoppelenburg A, Rietjens JA, van der Heide A. The effects of advance care planning on end-of-life care: a systematic review. Palliat Med 2014; 28: 1000–1025.

Advance care planning requires a team effort. It can involve doctors, nurses, allied health professionals, care workers and, most importantly, the person, their substitute decision-maker(s) and family.

Organisations can also support the process by having good policies and guidelines and by making current information available.

There are very significant differences between advance care planning and euthanasia. Advance care planning is the process of discussing and choosing future health care and medical treatment options. It is about people making decisions about their own medical treatment including refusing treatment. Euthanasia is the practice of intentionally ending life in order to relieve pain and suffering. Euthanasia is currently illegal in Australia.

An advance care planning discussion will often result in an Advance Care Directive. This document states preferences about health and personal care, as well as preferred health outcomes.

An Advance Care Directive may be made on the behalf of a non-competent person, and should be prepared from the person’s perspective to guide decisions about care.

In an emergency, medical decisions will be made by the doctors. The clinician will take the person's wishes into account, by referring to a person's Advance Care Directive and/or talking to the person's substitute decision-maker and family.

If the Advance Care Directive is not immediately available, life-prolonging measures may be started until the treating doctors discuss expressed wishes with the substitute decision-maker and family.

In the event of serious illness doctors will make treatment decisions based on best interests. This may include treatments that the person would not want.
Yes, a person can legally refuse treatment before or after it has been commenced. In some states, substitute decisions-makers can also refuse treatment on behalf of the person who has lost capacity. You can learn more about differences in advance care planning between states/territories on our advance care planning for your state or territory page.

A person is assumed to have decision-making capacity unless there is evidence to indicate it is in doubt. Assessment of capacity should take place as close as possible to the time at which the decision is required.

A person with capacity should:

  • know the decision facing them
  • know the possible options
  • know the reasonably foreseeable outcomes of the options available
  • be able provide a rationale for decisions they have made and therefore demonstrate ability to weigh the information, balance the risks and make a choice.

If the person retains capacity, they will participate in decision-making directly. Loss of capacity is the trigger to act on an Advance Care Directive.

Competence or lack of competence can fluctuate over time and for different levels of decision making and is 'function specific'. Competence relates to the specific issues, actions or decisions at hand. People should always be involved in decisions that concern them to the maximum extent possible. Even though a person may not have legal capacity to make a specific decision, they may still be able to express a view about what they want.

A person should not be regarded as lacking capacity merely because they are making a decision that is unwise or against their best interests. An unwise decision made by a person might alert a health professional to the need for a formal assessment of capacity. The assessment needs to focus on the logic in the way the decision is made, not a judgment about the decision itself.

Serious illness or injury can happen to anyone. Making an Advance Care Directive, and discussing it with loved ones and doctors can offer everyone peace of mind.

But planning is particularly important in several scenarios. Triggers for advance care planning can include:

  • if the answer to 'Would I be surprised if this patient died within the next 12 months?' is 'No'

or if a person:

  • raises advance care planning with a member of the general practice team
  • has an advanced chronic illness (for example: COPD or heart failure)
  • has a life limiting illness (for example: dementia or advanced cancer)
  • is aged 75 years or older, or 55 years or older if they are an Aboriginal and/or Torres Strait Islander person
  • is a resident of, or is about to enter, an aged care facility is at risk of losing competence (for example: has early dementia)
  • has a new significant diagnosis (for example: metastatic disease or transient ischemic attack)
  • is at a key point in their illness trajectory (for example: recent or repeated hospitalisation, or commenced on home oxygen)
  • does not have anyone (such as a family, caregiver or friend) who could act as substitute decision-maker
  • may anticipate decision-making conflict about their future healthcare
  • if the person has a carer.

A person must have the capacity to make decisions in order to make an advance care plan or to choose a substitute decision-maker.

A person with capacity should know the decision facing them, understand the possible options available as well as their outcomes, be able to understand and retain the information, use or weigh the information and finally communicate the decision.

Their competence or capacity is assessed during the process of an advance care planning discussion.

Fact sheets

Fact sheets and guides for health and care workers

  • Fact sheet

    Advance care planning fact sheet for care workers

    Advance Care Planning Australia

    Information about advance care planning for care workers.
  • Fact sheet

    Advance care planning fact sheet for healthcare professionals

    Advance Care Planning Australia

    Information about advance care planning for healthcare professionals.
  • Articles & Publications

    Advance care planning in aged care: A guide to support implementation in community and residential settings

    Advance Care Planning Australia

    This guide provides information to assist aged care providers, particularly managers and senior staff, in implementing advance care planning.
  • Fact sheet

    Advance Care Planning Guide for General Practice fact sheet

    Advance Care Planning Australia

    A guide to triggers and conversation starters for advance care planning discussions in general practice.
  • Fact sheet

    Frequently Asked Questions for General Practice on Advance Care Planning

    Advance Care Planning Australia

    A fact sheet with a list of questions and answers for general practitioners on advance care planning.
  • Fact sheet

    Advance Care Planning in General Practice: Guidance on use of MBS Items

    Advance Care Planning Australia

    This guide describes how MBS Item numbers may be used by GPs for Advance Care Planning (ACP) where clinically appropriate.
Learning materials

Webinars for health professionals

  • Video

    What is advance care planning?

    Decision Assist

    Learn about the principles of advance care planning int he first webinar of this series.
  • Video

    Advance care planning – how to

    Decision Assist

    Learn to recognise an opportunity to talk about advance care planning and how to have the conversation in this webinar.
  • Video

    Advance Care Planning in Primary Care

    Decision Assist

    A webinar designed to enhance the knowledge, skills and confidence of the primary care workforce to promote, initiate and continue discussions regarding future health preferences in routine care.
  • Video

    Grief, trauma and loss

    Decision Assist

    Understand the impact of changing health on people and their families, assist people with loss and provide referral to support services in this webinar.
  • Video

    We’re all different

    Decision Assist

    Recognise that people have varying beliefs and values, use conversational tools to discover the ways people differ, and find information about different cultural perspectives in this webinar.
  • Video

    George wants resuscitation

    Decision Assist

    Appreciate that people have choices in the care they want, be able to assist in making choices and be comfortable with people’s decisions in this webinar.
  • Video

    Jane does not want to go to hospital

    Decision Assist

    Recognise that people may not all want the same level of care, know where to refer people for assistance and understand your role and responsibility in assisting people with their choices in this webinar.
  • Video

    Marjorie is breathless

    Decision Assist

    Learn about ways to make people more comfortable, understand patient choices and recognise other team members’ roles in this webinar.
  • Video

    Do you think dad is dying?

    Decision Assist

    Learn to recognise when end-of-life care is needed, and be able to assist and provide direction to support services in this webinar.