What Is An Advance Care Directive?
Most people have opinions about the medical treatment they would accept, the care they would prefer and what quality of life means to them.
The problem is that those wishes may not be known when they matter most.
A serious stroke, accident, illness or sudden deterioration can leave a person unable to understand, communicate or make decisions about their own health care.
An Advance Care Directive allows a person to record important instructions, values and preferences before that happens.
What Is An Advance Care Directive?
An Advance Care Directive is a document that records your wishes, values, preferences or instructions for future health care and medical treatment if you later lose the ability to make or communicate those decisions yourself.
Depending on the state or territory, it may also allow you to identify a substitute decision-maker or provide legally binding instructions about treatments you would accept or refuse.
The forms, terminology and legal requirements differ across Australia.
Key Takeaway
Why Is An Advance Care Directive Important?
Family members and health professionals may care deeply about you but still not know what you would want.
Without clear guidance, people may be left trying to answer difficult questions under pressure:
- Would you want every available treatment attempted?
- Would you accept treatment that may prolong life without improving recovery?
- What outcomes would you consider unacceptable?
- Would comfort, independence or time with family matter most?
- Who should be involved in decisions about your care?
An Advance Care Directive can help make your preferences clearer.
It may also reduce the emotional burden placed on relatives who would otherwise have to guess what you would have wanted.
Your Wishes May Be Unknown
Family members may know you well but still have different beliefs about the treatment you would choose.
Decisions May Be Urgent
Serious medical decisions sometimes need to be made quickly, with limited time for family discussion.
Relatives May Disagree
One person may support continued treatment while another believes comfort-focused care better reflects your wishes.
A Decision-Maker May Still Need Guidance
Giving someone authority does not automatically tell them what choices you would want them to make.
A Simple Example
Imagine your mother experiences a severe stroke and can no longer communicate or understand the treatment decisions being discussed.
Doctors explain that several treatment pathways may be available, but the likely outcomes are uncertain.
One adult child believes every possible treatment should be attempted. Another remembers their mother saying she would not want treatment that prolonged her life if she had little chance of meaningful recovery.
Both children are trying to protect her, but neither is certain what she would choose.
If your mother had completed an Advance Care Directive, it may provide instructions or guidance about her values, acceptable outcomes and treatment preferences.
The document may not remove every difficult decision, but it can give the family and health professionals a clearer basis for making them.
What Can An Advance Care Directive Cover?
The content that can be included depends on the document and the law in your state or territory.
An Advance Care Directive may record:
Treatment Instructions
Directions about medical treatments you would consent to or refuse in specified circumstances.
Values And Beliefs
The personal, cultural, spiritual or religious values you want considered when decisions are made.
Quality Of Life
Information about the abilities, relationships and experiences that make life meaningful to you.
Care Preferences
Your preferences about the type, location or goals of future health and personal care.
Unacceptable Outcomes
Conditions or outcomes you believe would make certain treatments inconsistent with your wishes.
Decision-Making Guidance
Information to help a substitute decision-maker understand how you would approach difficult choices.
Some state and territory documents distinguish between legally binding treatment instructions and broader values or preference statements.
The more specific an instruction is, the easier it may be to determine whether it applies to the medical situation that later occurs.
Is An Advance Care Directive Legally Binding?
It can be, but the answer depends on the jurisdiction, the type of directive and whether the document is valid and applies to the situation.
Australian states and territories have different statutory and common-law arrangements.
Factors that may affect whether an instruction must be followed include:
- whether the person had decision-making capacity when the directive was made
- whether the document was completed voluntarily
- whether required signing or witnessing rules were followed
- whether the instruction is clear and specific
- whether it applies to the current medical circumstances
- whether the directive has been revoked
- whether later statements or behaviour indicate the person changed their wishes
A general statement such as “I do not want extraordinary treatment” may be harder to apply than an instruction that explains the treatment, circumstances and outcomes being considered.
State-specific advice can help ensure the document accurately records what you intend.
When Does An Advance Care Directive Apply?
An Advance Care Directive is designed for a future time when you cannot make or communicate the relevant health care decision yourself.
It does not normally replace your decisions while you retain decision-making capacity.
While you can understand the decision, weigh the available information and communicate a choice, your current decision generally takes priority.
Capacity is also decision-specific.
A person may be unable to make one complex medical decision while still being capable of making simpler choices about daily care, visitors, food or activities.
Is An Advance Care Directive Only For End-Of-Life Care?
No.
Advance Care Directives are often discussed in connection with palliative and end-of-life care, but their role can be broader.
A directive may become relevant after:
- a serious stroke
- a traumatic brain injury
- advanced dementia
- a sudden medical emergency
- loss of consciousness
- progression of a serious illness
- an inability to communicate following surgery or intensive care
The central issue is not age or whether death is expected.
The central issue is whether you can make or communicate the health care decision when it needs to be made.
Who Should Have An Advance Care Directive?
Advance care planning can be useful for any adult who wants greater control over future health care decisions.
It may be especially important for people who:
Have A Progressive Illness
A condition may gradually affect health, communication or decision-making capacity.
Live With Multiple Medical Conditions
Complex health needs may create difficult choices about future treatment and care.
Have Strong Treatment Preferences
You may already know that certain outcomes or interventions would not align with your values.
Are Reviewing Future Planning
Estate planning, retirement or aged care planning may prompt a broader review of health care wishes.
Want To Reduce Family Uncertainty
Clear guidance may reduce the pressure on relatives asked to make decisions during a crisis.
Are Currently Healthy
Planning is often easier before illness creates urgency or affects decision-making capacity.
When Should You Create An Advance Care Directive?
The best time is generally before it is urgently needed.
A person must usually have the required decision-making capacity when creating or changing their own Advance Care Directive.
Planning while you are well gives you time to:
- consider what matters most to you
- discuss likely medical situations with a health professional
- talk with family and potential substitute decision-makers
- understand the legal form used in your jurisdiction
- write clear and practical instructions
- store and share the completed document
A diagnosis of dementia or another illness does not automatically prevent someone from completing a directive.
However, the person must still have the capacity required to understand and make the decisions being recorded.
How Is An Advance Care Directive Different From Advance Care Planning?
Advance care planning is the broader process.
It involves thinking about your future health care, identifying your values, discussing your wishes and considering who may need to make decisions for you.
An Advance Care Directive is one document that can result from that process.
Advance Care Planning
The ongoing process of thinking, discussing, deciding and preparing for future health and personal care.
Advance Care Directive
A written record of instructions, values, preferences or decision-making arrangements recognised under the applicable law.
A completed form without a meaningful conversation may be less useful than a directive that has been carefully discussed with the people who may later rely on it.
How Is An Advance Care Directive Different From An EPOA?
An Advance Care Directive and an Enduring Power of Attorney generally serve different purposes.
Advance Care Directive
Main purpose: Records your own wishes, values or instructions about future health care and medical treatment.
Enduring Power Of Attorney
Main purpose: Appoints another person to manage authorised financial, property or legal matters if required.
The distinction varies across Australia because some jurisdictions allow enduring powers to cover personal or health matters as well as financial matters.
Even where someone has authority to make health decisions, an Advance Care Directive can still be important because it helps explain what decisions you want that person to make.
Read Advance Care Directive vs EPOA: What’s The Difference? for a closer comparison.
How Is It Different From Enduring Guardianship?
Enduring Guardianship generally appoints another person to make authorised personal, health, accommodation or lifestyle decisions when you cannot make those decisions yourself.
An Advance Care Directive records your own wishes, values or instructions.
The two arrangements can therefore work together.
An appointed guardian or other substitute decision-maker may use the directive to understand your preferences and make decisions consistent with your instructions and values.
Read Advance Care Directive vs Enduring Guardian for more detail.
Future Planning Is Not One Document
No single document necessarily covers every future financial, personal, medical and estate decision.
Will
Explains how your estate should be managed and distributed after your death.
Enduring Power Of Attorney
Usually provides authority for financial, property or legal matters during your lifetime.
Enduring Guardian Or Equivalent
Appoints someone to make certain personal, health, lifestyle or accommodation decisions.
Advance Care Directive
Records your own future health care, treatment instructions, values and preferences.
The document names and legal functions differ between states and territories, so each planning role should be checked separately.
Can Family Members Override An Advance Care Directive?
Family members cannot simply disregard a valid and applicable Advance Care Directive because they disagree with it.
However, whether a particular instruction must be followed depends on the law, the document and the clinical circumstances.
Questions may arise if:
- the directive is unclear
- the treatment situation was not anticipated
- the instruction does not apply to the current circumstances
- there is uncertainty about the person’s capacity when it was created
- the person later revoked or changed the directive
- the document does not meet state or territory requirements
- there is evidence that the person’s wishes changed
Disagreement may require clarification from senior clinicians, legal advisers, guardianship bodies, tribunals or courts.
Clear instructions, current documents and early family conversations can reduce the chance of conflict.
Can You Change Or Revoke An Advance Care Directive?
In many circumstances, yes.
A person who retains the required decision-making capacity can generally review, update or revoke their directive in accordance with the applicable law.
A review may be appropriate after:
- a new diagnosis
- a significant change in health
- a hospital admission
- a change in personal values or treatment preferences
- the death or unavailability of a nominated decision-maker
- a relationship change
- moving interstate
- changes to the relevant forms or legislation
Old copies should be clearly withdrawn or destroyed, and updated copies should be provided to the people and services who may need them.
Where Should You Keep An Advance Care Directive?
A directive is only useful if it can be found when decisions need to be made.
Consider providing copies to:
- your substitute decision-maker, guardian or relevant attorney
- your general practitioner
- your treating specialists
- your hospital or health service
- your aged care or support provider
- trusted family members
- any state-based storage or registry service available to you
You may also be able to upload advance care planning documents to your My Health Record.
Keep a copy in a location that is accessible and tell the relevant people where it is stored.
What Happens If You Do Not Leave Clear Instructions?
If you lose decision-making capacity without recording your wishes, health professionals and substitute decision-makers may need to rely on conversations, previous statements and what they believe you would have wanted.
This can create uncertainty even when everyone is acting in good faith.
Family Members May Guess Differently
Relatives may remember different conversations or interpret your values in different ways.
The Decision-Maker May Feel Responsible
Someone may carry the emotional burden of deciding without knowing whether the choice reflects your wishes.
Treatment May Not Reflect Your Preferences
Care decisions may be based on clinical judgement and available legal authority without detailed guidance from you.
Conflict May Delay Agreement
Disagreement about what you would have wanted can make an already difficult situation more distressing.
What You May Really Be Trying To Decide
You may not simply be asking what an Advance Care Directive is.
You may really be trying to decide how to protect your family from having to guess.
The answer is not only to complete a form.
It is to think carefully, record clear guidance, choose the right people, discuss your wishes and make sure the document can be found.
Decision Support
Before completing an Advance Care Directive, consider the following questions:
What Matters Most To You?
Consider independence, comfort, communication, relationships, dignity, cultural beliefs and quality of life.
Which Outcomes Would Be Unacceptable?
Think about the circumstances in which the burdens of treatment may outweigh the likely benefit for you.
Who Needs To Understand Your Wishes?
Include family, substitute decision-makers and health professionals who may later be involved.
Are Your Instructions Specific Enough?
General values are useful, but treatment instructions may need clear clinical circumstances to be applied confidently.
Are Other Documents Needed?
Check whether you also need to appoint a medical decision-maker, guardian, attorney or other representative.
Will The Document Be Accessible?
Decide who will receive copies and how health services can locate the current version.
Advance Care Directive Questions
What is an Advance Care Directive?
An Advance Care Directive is a document that records your instructions, values or preferences for future health care and medical treatment if you later lose the ability to make or communicate those decisions.
Is an Advance Care Directive legally binding?
It may contain legally binding instructions, depending on the jurisdiction, the type of directive and whether it is valid and applies to the medical situation.
Who should have an Advance Care Directive?
Any adult may benefit from advance care planning. It may be particularly important for people with progressive illness, complex medical conditions or strong views about future treatment.
Can family members override an Advance Care Directive?
Family members cannot simply ignore a valid and applicable directive. However, disputes may arise about whether the document is valid, clear or relevant to the current circumstances.
Is an Advance Care Directive the same as an EPOA?
No. An Advance Care Directive records health care wishes and treatment preferences. An Enduring Power of Attorney generally provides another person with authority over financial, property or legal matters, although jurisdictional differences apply.
Is an Advance Care Directive the same as Enduring Guardianship?
No. Enduring Guardianship generally appoints another person to make authorised personal or health decisions. An Advance Care Directive records your own wishes and instructions.
Can I change my Advance Care Directive?
In many circumstances, yes, while you retain the capacity required to review or revoke it. Follow the formal requirements that apply in your state or territory.
Can someone else complete an Advance Care Directive for me?
Your own directive must generally reflect decisions you make while you have the required capacity. Other planning documents may sometimes record information supplied by family or a substitute decision-maker, but these are not necessarily the same as your own legally recognised directive.
Do all Australian states use the same form?
No. States and territories use different forms, terminology, witnessing requirements and legal frameworks.
Should I speak with a doctor before completing one?
Discussing your health, likely treatment options and the meaning of particular medical interventions with a doctor can help you write clearer and more useful instructions.
Summary
An Advance Care Directive records your wishes, values, preferences or instructions for future health care and medical treatment if you later lose the ability to make or communicate those decisions.
It can help health professionals and substitute decision-makers understand what matters to you and may include legally binding treatment instructions where the relevant legal requirements are met.
It is different from an Enduring Power of Attorney, which commonly deals with financial and legal matters, and Enduring Guardianship, which generally appoints someone to make personal or health decisions.
Because the forms and laws differ across Australia, use the current document for your state or territory and seek appropriate medical or legal guidance when preparing detailed instructions.
Sources
- Australian Government Department Of Health, Disability And Ageing — Advance Care Directive
- Australian Government Department Of Health, Disability And Ageing — Advance Care Planning
- NSW Health — Advance Care Planning
- NSW Health — Making An Advance Care Directive
- Service NSW — Make An Advance Care Directive
- Victorian Department Of Health — Advance Care Planning
- Victorian Department Of Health — Advance Care Planning Forms
- Advance Care Planning Australia — Advance Care Planning And The Law
Disclaimer
This article provides general information only and does not constitute legal, medical, financial or professional advice. Advance Care Directive laws, forms, terminology, witnessing requirements and legal effects vary between Australian states and territories. Whether a directive is valid and applies depends on the document, the person’s capacity, the instructions recorded and the clinical circumstances. Use current official information for your jurisdiction and obtain advice from an appropriately qualified health or legal professional where required.