What do I need to know about advance care planning?

Do you know what they'd want?

Advance care planning is a process where a person discusses their values and healthcare preferences with their family, friends and healthcare team. If the person at some point in time is not able to make decisions for themselves, or cannot communicate, their advance care plan guides the person's family and doctors in making treatment decisions. The person can write their plan down to help ensure their wishes are respected. In some states or territories, a person can write their preferences down in a formal document known as an advance care directive.

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

Advance care planning benefits everyone: 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

Why is advance care planning important?

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 wished to have received a treatment. In circumstances such as these, the concept of recording preferences about medical treatment in advance developed.

Broadly speaking, with 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.

Who should be involved in advance care planning?

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.

'Decision-making capacity' refers to the ability to make decisions

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 plan.

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. Patients should always be involved in decisions that concern them to the maximum extent possible. Even though a patient 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.

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.

Doctor explaining end of life care options

Advance care planning for health and care workers

Roles and responsibilities

Advance care planning is a team effort, involving conversations, information, documentation, sharing of plans, and possible activation.

Learn more
  • 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.

  • Education & Training

    ACP Learning

    Advance Care Planning Australia

    ACP Learning is a national eLearning hub to support aged care workers, health professionals and consumers learn more about advance care planning. There are a range of modules addressing advance care planning introductions, conversations, planning legal implications and more. The ACP Learning project is led by Advance Care Planning Australia and is funded by the Australian Government.

  • Webinar

    What is advance care planning?

    Decision Assist

    Learn about the principles of advance care planning (ACP), how ACP can benefit your clients, and ways you can integrate ACP into their care.