Advance care directives: control over your future care

Do you have any plans in place around what might happen if you were to become suddenly and acutely unwell? An advance care directive (ACD) may provide some sense of control. But what is an ACD, who can create one, and how do they work?

While the thought of planning for the unexpected may not be appealing, an ACD may provide more certainty with the oversight of your future healthcare wishes. It may also relieve the anxiety and stress of your family and friends, should they be required to make decisions for you.

What is an advance care directive?

An advance care directive, sometimes referred to as a living will, is a legally binding document that states your preferences for care, including values and goals. It can help your loved ones and doctors make choices on your behalf, should you become unwell and unable to make your own decisions. For example, this could include a ‘do not resuscitate’ direction for certain circumstances, such as when a person has a terminal illness.

Advance care planning laws, terminology and legal forms differ across Australian states and territories. However, Program Director of Advance Care Planning Australia (ACPA), Linda Nolte, said they all generally allow for a person to clarify their values and preferences to inform future care, as well as in some states to appoint a substitute decision-maker who is empowered to make medical decisions, if the person is unable to.

Types of advance care directives

According to the End of Life Directions for Aged Care (ELDAC) service, there are two types of advance care directives:

1. Common law advance care directives: These ACDs are recognised by the common law (decisions made by judges in the courts) and generally must be followed. These types of Directives exist in all states and territories except Queensland.
2. Statutory advance care directives: These ACDs are governed by state and territory legislation. These types of directives exist in all states and territories except New South Wales and Tasmania.

Legal standing of advance care directives

The Queensland University of Technology’s End of Life Law website, breaks down the legality of statutory and common law ACDs by state and territory:

• New South Wales and Tasmania: common law ACDs are the only ACDs that exist and are legally binding.
• Australian Capital Territory, Northern Territory, South Australia and Western Australia: both statutory and common law ACDs are legally binding.
• Victoria: common law ACDs that refuse treatment and statutory ACDs are binding.
• Queensland: only statutory ACDs are legally binding.

It’s important to note that the legal standing of common-law advance care directives has only been tested in New South Wales, according to the ACPA. However, the ACPA said in all jurisdictions, common law documents provide evidence of the person’s views and wishes. This, they said, is referred to as “having evidentiary weight under common law” and relates to the fact that if a doctor provides treatment to a patient that is contrary to their written preferences, this can be used as evidence in any court action.

Who can make an advance care directive, and how?

An ACD, either common law or statutory, can be made voluntarily by anyone aged 18 and over, who has decision-making capacity, the ACPA notes. According to the Department of Health, decision-making capacity refers to a person’s ability to make day-to-day decisions about legal, healthcare, financial and personal matters.

According to the ELDAC, common law (or non-statutory) ACDs:

• can be verbal (such as confirming your wishes with your substitute decision-maker or doctor) or in writing (such as using a recommended form or creating a letter)
• no witnesses are required (except if it is a verbal ACD)

Statutory ACDs:

• must be made in writing (using the appropriate form) and signed by the person making the directive
• must be witnessed

Ms Nolte said you do not need to hire a lawyer to draft an ACD; however, the document will require the signature of a doctor and your chosen substitute decision-maker.

There are forms available for each state and territory jurisdiction to help create an ACD.

Once the directive document is signed and dated by you, your doctor and chosen substitute decision-maker, the Department of Health said you should then give copies of this directive to:

• your family
• your substitute decision-maker
• your doctor, and regular hospital or aged care facility (if you have one)
• the ambulance service (if they attend your home for treatment)
• anyone else who you feel is appropriate

You can also upload your ACD to your My Health Record so any future doctors treating you can access it. Your My Health Record is part of your myGov account with the Australian Government.

What is included in an advance care directive?

The Department of Health said an ACD can include one or more of the following:

• the person you would like to be your substitute decision-maker, in available states and territories
• details of what is important to you, such as your values, life goals and preferred outcomes
• the treatments and care you would like to receive or refuse if you have a life-threatening illness or injury

Ms Nolte said a common law ACD should include your name, date of birth, preferences of care, acceptable or unacceptable outcomes (e.g. CPR, ventilation, loss of independence), name of the substitute decision-maker, signature and date.

How do you select a substitute decision-maker and can you change or revoke them?

ACPA recommends people choose someone that they can trust to make decisions in their best interest as their substitute decision-maker. It may not necessarily be the person closest to you, but someone who can remain calm and level-headed in a crisis, Ms Nolte said. Your appointed substitute decision maker can be changed and/or revoked in future.

Substitute decision-makers can be appointed in ACDs in most states and territories in Australia. ELDAC provides more information about substitute decision-makers, and explains that relevant state and territory laws set out who will be a substitute decision-maker for you, if you do not have one. It may not necessarily be your next of kin.

When does an advance care directive apply?

The ELDAC said an ACD applies if a person loses capacity in a healthcare situation that arises in their life. For a statutory ACD to apply, requirements for relevant state or territory legislation must also be met.

When may an advance care directive not apply?

Valid ACDs generally must be followed by health professionals; however, according to ELDAC, there are limited circumstances when an ACD does not have to be followed, such as:

• when it’s too vague to inform decision-making
• if a person’s circumstances have changed so much since they completed it that it should not be followed

The law differs on this topic across Australia.

When should I change my advance care directive?

The Department of Health recommends that you can change your ACD at any time, and you may like to review it:

• if your substitute decision-maker changes
• if your preferences change
• if you have a medical condition that changes

It is important you give the most recent version to anyone who received your earlier advance care directive. You may want to upload it to your My Health Record on myGov too so it is visible for any future doctors who treat you in Australia.

What factors can help strengthen the validity of an advance care directive?

The ACPA said that although there is generally no requirement for an ACD to be documented, signed and witnessed, the lack of a written document may give rise to genuine and reasonable doubts about validity and current applicability.

The following can strengthen the validity of an ACD, according to the ACPA:

• It is a written document.
• There is evidence that, when signed, the person was competent and not unduly influenced.
• Witnessing may provide further support, as may the witness’s qualifications (e.g. doctor).
• Witnessing requirements are specified for statutory ACD documents.
• A more recent advance care plan may be regarded as more valid because it provides more certainty about its currency.
• It relates to a current condition. An advance care plan that clearly contemplates the current clinical circumstances will reduce doubt about its applicability.
• It is appropriately worded: an advance care plan will be stronger if it avoids vague or imprecise language.

How does an advance care directive differ to an enduring power of attorney?

According to Ms Nolte, an enduring power of attorney (EPOA), like an ACD, is a legal document that empowers a substitute decision-maker to act on a person’s behalf regarding their health care, should they become incapacitated and unable to make their own decisions. However, an EPOA can direct a substitute decision-maker to make decisions about financial matters as well as health matters, whereas an ACD can only set out a person’s wishes relating to their medical treatment and preferences.

The aged care guide said you can make both an ACD and EPOA, however if you are incapacitated in the future and your medical treatment providers have a choice between these two legal documents, then any wishes set out in the ACD will generally take precedence over any decisions made by a substitute decision-maker under an EPOA.

→Related article: Powers of Attorney: What are they and what do they do?

What happens if you don’t have an advance care directive?

According to a recent Australian research study, about 30% of older Australians had an ACD in their health record. For the majority of older Australians who do not have an ACD, this would mean that if they were to become suddenly unwell and unable to communicate, their family and doctors may be left to make decisions for them – without knowing their preferences.

“Prior to making medical treatment decisions, the doctor will try to find out as much as possible about a person’s values and preferences through their loved ones; however, this is far from ideal,” Ms Nolte said.

“Unfortunately, many families are left to make life-and-death decisions under the most difficult of circumstances.”

An ACD can help to potentially avoid such scenarios, as well as clarifying who you would like to be your substitute decision-maker, if required, in some states and territories.

It is important that you make an advance care directive voluntarily, and when you have capacity. Ms Nolte recommends people make a directive when they are relatively fit and healthy and have the time to consider their values, preferences and acceptable health outcomes.

Advance care planning is particularly important for older people and those living with chronic illnesses such as cancer, dementia and heart disease, Ms Nolte said.

What is the difference between advance care planning and euthanasia/voluntary assisted dying (VAD)?

The ACPA said advance care planning is about discussing and choosing future health care and medical treatment options and people making decisions about their own medical treatment including refusing treatment.

Voluntary assisted dying, on the other hand, is not permitted in Australia, with the exception of in Victoria where the Voluntary Assisted Dying Act 2017 came into effect in June, 2019.

Where can I find further advice about advance care directives?

For more information about ACD laws, requirements and forms in your state or territory, you can visit the following government websites (sorted alphabetically):

• Australian Capital Territory
• New South Wales
• Northern Territory
• Queensland
• South Australia
• Tasmania
• Victoria
• Western Australia

Advance Care Planning Australia (ACPA) is also a hub of information regarding advance care directives in Australia.

Ms Nolte said Australians can also contact the ACPA’s hotline on 1300 208 582 (9am – 5pm, Monday to Friday AEST), for free advice.

If you are currently assessing your future health care needs and estate plan, it may also be worth exploring your life insurance options through Canstar.

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Cover image source: rallef (Shutterstock)