Advance Care Planning (ACP) involves a person considering and planning for future care. ACP guides decision-making when the person can no longer speak for themselves. It can involve the development of a formal document, an Advance Care Directive (ACD or AD).
Why ACP?
Aims of ACP:
- To provide guidance for decision-making when a person cannot speak for themselves.
- To designate a substitute decision-maker (SDM).
- To complete an advance care planning document. This document legally recognises the instructions of a competent adult about their preferences for future healthcare and/or identifies the person whom they trust to speak on their behalf in the future if they cannot make their choices known.
ACP is an ongoing process requiring continued review of:
- Goals of care and preferences for medical treatment.
- Changes occurring in the older person’s overall health or lifestyle situation.
- Recognition that plans may vary depending on whether the person is healthy, has mild to moderate chronic illness or is likely to die in the next 6 months.
ACP improves:
- Compliance by doctors and family members with the person’s values and wishes.
- Likelihood the person will die in their preferred place.
- The older person and their family’s satisfaction with care.
- Family preparedness for what to expect during the dying process.
- Quality of death as reported by relatives.
Nurses can support older people with ACP in a number of ways. They can:
- Check whether an ACD has already completed.
- Support them in making their wishes known.
- Identify who their preferred SDM is.
- Make people aware of documents that are commonly used, including any documents available within the organisation.
- Encourage people to make their wishes known while they are still competent.
- Encourage individuals to discuss their preferences with their GP, if appropriate.
- Have any queries addressed that the older person may have regarding the instructions they have written or want to write.
- Confirm that the family knows about the ACP.
- Check whether relevant health professionals, such as the person’s GP, are aware of, or have a copy, of relevant documents.
Nurses need to be should be aware of any legislation related to ACPs, ACDs and SDMs as it specifically applies to their
own state or territory.
The ACP process helps people to:
- Consider their healthcare goals, values, beliefs and how these may influence their future treatment decisions.
- Appoint a SDM if preferred.
- Discuss their values about quality of life with family and healthcare providers.
- Formalise their directions as an ACD if this is their choice.
ACP involves a person thinking about their preferences for future care planning or identifying the person they would like to act as their SDM. As part of their thinking and discussion, they can prepare a formal document, an ACD.
State and territories in Australia have developed formal documents that can be used. If the person did not complete a formal plan, their wishes maybe documented in other forms such as letter or details of a conversation in clinical notes.
To find out more visit the National framework for advance care planning documents.
General common law principles apply to ACDs and ACP. These common law principles include:
- The right for every competent adult person to refuse medical treatment, now and in the future.
- Circumstances for administering medical treatment to a person without their consent.
- Recognition that adults have the decision-making capacity to consent, or refuse consent, to medical treatment unless there is evidence to the contrary that individuals are not competent to consent.
- Competence is presumed unless a court has determined that an individual does not have decision-making capacity.
- Formal ACP requires that a person is competent or has decision-making capacity.
- If a person is deemed to no longer have the mental capacity to make certain decisions, they lose their right to consent, or refuse to medical treatment.
In this situation, the responsibility for medical treatment decision-making falls to a designated SDM or where there is none to a ‘person responsible’ as set out by legislation within the state or territory where the person is residing.
Substitute decision-maker (SDM) is a general term for a person that is either appointed or identified to make health care decisions on behalf of a person whose decision-making capability is impaired. A SDM does not need to be a family member.
Depending on the situation an SDM may be either:
- Chosen by the person informally.
- Formally appointed by the person under the legal framework that exists in the relevant state or territory where they live, or
- Assigned to the person or appointed for the person by a court.
It is important to remember that if the person is competent, then the SDM does not have a role.
ACP assumes that the individual is able to make the decisions for the future. Decision-making capacity refers to the ability to make decisions. A person is assumed to have decision-making capacity unless there are indications that they do not have this capacity.
Decision-making capacity is task specific, not global. This means that the older person may be able to engage in competent decision-making on some things but not on others.
As defined legally, components of decision-making capacity include the:
- Ability to understand information.
- Appreciation of the relevance of that information to the situation.
- Ability to reason or weigh up the risks / benefits of each decision.
- Ability to express a choice.
People with dementia may have fluctuating capacity. They may still be able to demonstrate their preferences.
It is still possible to conduct ACP with individuals who have lost decision-making capacity through illnesses resulting in cognitive impairment, like dementia.
If they have previously legally appointed a SDM or person responsible, then this SDM can complete some documents on the person’s behalf.
However, they can never complete an ACD on behalf of the older person with dementia. This is because ACDs can only be completed by the person to whom they apply.
Through supported decision-making, a person with limited decision-making capacity can however still be involved in ACP discussions.
This is because they may still have capacity to discuss and describe certain aspects, such as their overall values and what they consider a reasonable outcome, even if they are unable to discuss specific healthcare or lifestyle options or understand the consequences of choices to be made.
Is the proposed treatment medically indicated?
While a person may have preferences for certain treatments some treatments may not be medically indicated.
- The medical practitioner must determine whether a person is likely to benefit from the medical treatment.
- If the treatment is not likely to benefit the person, it should not be offered as a treatment choice or it should be withdrawn if it has already been commenced.
- If the proposed treatment is likely to be medically beneficial, the healthcare professional team should discuss this treatment choice with the older person or their nominated SDM.
What are the person's wishes regarding medically indicated treatment?
- For a competent person – while the person is still able to make their own decisions, the medical practitioner will discuss the proposed treatment and the potential benefits and burdens with the person.
- A person who is competent must always be involved in the decision-making process regarding medical treatment.
- The person may then choose whether or not to accept the treatment.
- For a person who does not have decision-making capacity – for a person who has lost the capacity to engage in decision-making, the medical practitioner must discuss the proposed treatment and the potential benefits and burdens with the person’s SDM.
- The SDM should choose whether or not to accept the treatment offered based on the values, wishes and instructions of the older person in their ACD or ACP.
- The legal status of the SDM and the legal weight of their decisions is covered by legislation of the jurisdiction.
- If there is no ACD or ACP or a nominated SDM, then after discussion with the ‘person responsible’, decision-making should be made according to the structure defined in the legislation of the jurisdiction.
ACP is an important part of planning for the future for older people. Many things can prompt someone to consider ACP – a birthday, a visit to the doctor, entering a residential aged care facility, the death of a friend or family member, going overseas to travel.
People may choose to discuss or document their wishes with health professionals involved with their care or with other people such as lawyers, volunteers or financial planners.
The language used to describe ACP or ACDs may change between settings. For example, in community care, people may talk about getting their affairs in order.
Cultural differences and a lack of understanding due to language difficulties may also need to be addressed when supporting ACP. Consider the use of an interpreter where appropriate.
Proforma documents can be useful as they prompt people to cover a range of areas. However, people can write their own instructions or wishes. They do not have to use a standard form.
ACP - State and Territory Information
It is important to understand and be familiar with the legal responsibilities and implications in your jurisdiction(s).
If the issues are complex or if you would like more information about ACP matters, the
National Advance Care Planning Support Service is available for telephone enquiries.
- Advance Care Planning Australia website
- Training assistance and resources for health professionals to better implement advance care planning
- Alzheimer's Australia National Quality Dementia Care Initiative
- Start2talk website provides advance care planning information and resources to support people with dementia.
Page updated 05 December 2023