📋 Key Information Summary
- Advance care planning (ACP) is a voluntary, ongoing process that enables individuals to reflect on, discuss, and document their values, goals, and preferences for future medical care in the event they lose decision-making capacity.
- ACP conversations should be introduced early — ideally at the time of diagnosis of a life-limiting illness, during stable health, or upon entry to aged-care — not only during acute deterioration.
- In all Australian states and territories, adults with decision-making capacity may complete an Advance Care Directive (ACD), which may be legally binding depending on jurisdiction.
- A Substitute Decision-Maker (SDM) should be formally appointed where legislation permits; in some jurisdictions a default hierarchy applies when no appointment has been made.
- Effective ACP requires trained facilitators using structured conversation frameworks such as Respecting Patient Choices®, SPIRIT, or the Serious Illness Conversation Guide.
- ACP documentation must be legible, dated, signed, and accessible across care settings — stored in the My Health Record where possible and communicated to the GP, hospital teams, ambulance, and aged-care facilities.
- ACP is not a one-off event; plans should be reviewed after every significant change in health status, hospital admission, or shift in treatment goals.
- Aboriginal and Torres Strait Islander peoples may face unique barriers including cultural safety concerns, distrust of health systems, language differences, and differing concepts of autonomy; culturally responsive, community-led approaches are essential.
- Under the Aged Care Quality Standards (Standard 2 — Ongoing Assessment and Planning), residential aged-care providers must offer and support ACP for all consumers.
- Patients who lack capacity and have no ACP or SDM will have medical treatment decisions made under guardianship legislation by appointed guardians or the relevant tribunal (e.g., VCAT, QCAT, NCAT).
- Clinicians must distinguish between an ACP (a conversation and values-based plan) and an ACD (a specific legal document) — both are complementary but not identical.
- ACP reduces unwanted hospitalisations, increases concordance between care received and patient wishes, and supports dying in the preferred place of care.
Introduction & Australian Epidemiology
Advance care planning (ACP) is a process of discussion and shared decision-making between an individual, their family, and their health-care team about future medical treatment and end-of-life care. It enables people to articulate their values, goals, and preferences for care in the event they can no longer communicate or make decisions themselves. ACP should be introduced early in the disease trajectory, reviewed regularly, and communicated to all relevant health services and care providers.
In Australia, ACP is recognised as a core component of high-quality, person-centred care. The National Framework for Advance Care Planning (2011, updated) and the Australian Commission on Safety and Quality in Health Care (ACSQHC) provide national guidance. Despite strong policy endorsement, uptake remains variable. The AIHW reports that fewer than 15% of Australians have a documented advance care directive, and completion rates are particularly low among younger adults, culturally and linguistically diverse (CALD) communities, and Aboriginal and Torres Strait Islander peoples.
Australian Burden
- Approximately 160,000 Australians die each year; the majority are aged ≥65 years and die from chronic conditions including cardiovascular disease, cancer, chronic obstructive pulmonary disease, dementia, and renal failure.
- Studies from Australian hospitals show that up to 70% of elderly patients who die in hospital received burdensome interventions (e.g., ICU admission, CPR, mechanical ventilation) that were discordant with their expressed or likely wishes.
- The National Palliative Care Strategy (2018) identifies ACP as a priority action for ensuring that end-of-life care aligns with individual preferences.
- Residential aged-care facilities subject to the Aged Care Quality Standards must facilitate ACP conversations for all residents (Standard 2).
- The My Health Record Act 2012 allows ACDs to be uploaded to the national digital health record, improving accessibility across jurisdictions.
Avoid defaulting to acute interventions: Without an ACP, patients who lose capacity often receive full active treatment, including ICU-level care, which may not align with their values. Early ACP reduces the risk of unwanted and burdensome interventions at end of life.
ACP Conversations
When to Initiate ACP
ACP conversations are appropriate for any adult with decision-making capacity, but are especially important in the following clinical contexts:
1
Diagnosis of a life-limiting illness
Cancer, heart failure (NYHA III–IV), COPD (GOLD stage IV), motor neurone disease, advanced dementia, end-stage renal or liver disease. Introduce ACP at a stable outpatient visit, not solely during crisis.
2
Admission to residential aged care
Aged Care Quality Standard 2 requires ongoing assessment including ACP. Offer conversation within the first weeks of admission and review annually.
3
Significant change in health status
New diagnosis, hospitalisation, functional decline, recurrent falls, or transition from curative to palliative intent. Each event is a prompt for revisiting ACP.
4
Patient or family-initiated request
Respect and respond to any patient or family expression of concern about future care, treatment burden, or end-of-life preferences.
Conversation Frameworks
ACP conversations require skill, training, and adequate time. Validated frameworks used in Australian practice include:
| Framework | Origin / Provider | Key Features | Australian Availability |
|---|---|---|---|
| Respecting Patient Choices® | Austin Health, Melbourne | Structured 4-step model; widely used in Victorian hospitals and RACFs; trains volunteer facilitators | Available nationally; training via Austin Health |
| SPIRIT (Sharing Patient's Illness Representations to Increase Trust) | Adapted from US; used in Australian trials | Two-visit model: visit 1 explores values and understanding; visit 2 completes ACD with clinician | Research settings and some primary care |
| Serious Illness Conversation Guide | Ariadne Labs (US); adapted for Australia | Seven-question structured guide covering illness understanding, information preferences, goals, fears, function, trade-offs, and family wishes | Used in palliative care and oncology settings |
| Dying to Talk Discussion Starter | Palliative Care Australia | Consumer-facing resource to initiate family conversations; available in multiple languages | Free download from Palliative Care Australia website |
| MyValues | MyValues.com.au | Online tool helping individuals clarify values related to end-of-life care; generates a personal statement | Freely accessible online |
Conversation Principles
- Choose the right setting: quiet, private, unhurried; avoid conducting the conversation at the bedside during acute illness unless the patient initiates it.
- Assess readiness: use open-ended questions — "Have you thought about what would be important to you if you became very unwell?"
- Explore values, not just treatments: focus on what gives life meaning (e.g., independence, being at home, recognising family) rather than asking "Do you want CPR?"
- Use plain language: avoid medical jargon; explain prognosis honestly but compassionately.
- Include the family / SDM: the appointed SDM should be present for key conversations so they can hear the patient's values directly.
- Document contemporaneously: record the conversation in the medical record immediately, even before a formal ACD is completed.
- Allow multiple conversations: ACP rarely occurs in a single encounter. Allow the person time to reflect, discuss with family, and revisit.
GP tip: The Medicare Benefits Schedule (MBS) does not have a specific item number for ACP consultations; however, ACP can be incorporated into standard GP consultation items (e.g., Level B–D items 23–36), chronic disease management plans (Items 721–732), or health assessments (Items 701–707). Extended consultations (Item 5000 series) may be appropriate for complex ACP discussions.
Capacity Assessment for ACP
A person must have decision-making capacity to complete an ACP. Capacity is decision-specific and time-specific. Under Australian common law and relevant state/territory guardianship legislation, a person has capacity if they can:
- Understand the information relevant to the decision
- Retain that information long enough to make and communicate a decision
- Use and weigh the information in the decision-making process
- Communicate the decision in some way
If there is doubt about capacity, a formal assessment using tools such as the Assessment of Capacity for Everyday Decision-Making (ACED) or the MacArthur Competence Assessment Tool for Treatment (MacCAT-T) may assist. In complex cases, referral to psychiatry, geriatrics, or the relevant guardianship tribunal is appropriate.
Documentation
Types of ACP Documentation
ACP documentation exists on a spectrum from informal values statements to legally binding advance care directives. Understanding the distinction is critical for clinicians.
| Document | Description | Legal Status | Typical Author |
|---|---|---|---|
| Values statement / ACP conversation notes | Clinical record of a conversation about the patient's values, goals, and wishes; may be in the progress notes or a dedicated ACP form | Not legally binding but clinically informative; should be considered by treating teams | GP, specialist, nurse, ACP facilitator |
| Advance Care Directive (ACD) | A formal written document completed by the person specifying treatment preferences or appointing an SDM (or both); may cover consent to or refusal of specific treatments | Legally binding in most Australian jurisdictions (see below); health professionals must follow a valid ACD unless exceptional circumstances apply | Patient (with clinician guidance); witnessed per jurisdictional requirements |
| Appointing a Substitute Decision-Maker | A formal legal appointment (e.g., Enduring Power of Guardianship, Medical Treatment Decision Maker) specifying who can make decisions when the person loses capacity | Legally binding; the appointed person's authority is activated upon loss of capacity | Patient; witnessed and registered per jurisdictional requirements |
| Not-for-resuscitation (NFR) / Goals-of-care order | A clinician-authored medical order documenting the decision that CPR or certain interventions are not appropriate | Medical order; guided by ACP but ultimately a clinical decision; forms part of the treatment plan | Treating medical practitioner |
Jurisdictional Variation in ACD Legislation
ACP legislation in Australia is state- and territory-based. Key differences include terminology, witnessing requirements, and scope of binding authority.
| Jurisdiction | Key Legislation | Term Used | Binding? | Witnessing |
|---|---|---|---|---|
| Victoria | Medical Treatment Planning and Decisions Act 2016 | Advance Care Directive | Yes — must be followed | 1 witness (not the SDM) |
| New South Wales | NSW Health policy; Guardianship Act 1987 | Advance Care Directive / Living Will | Common law recognition; not codified in single statute | Recommended witnessing; no specific statutory requirement |
| Queensland | Powers of Attorney Act 1998; Guardianship and Administration Act 2000 | Advance Health Directive (AHD) | Yes — legally binding | 2 witnesses (1 must be a JPs, CDec, or lawyer; neither is the attorney) |
| South Australia | Advance Care Directives Act 2013 | Advance Care Directive | Yes — must be followed | 1 witness |
| Western Australia | Advance Health Directive Act 1996 | Advance Health Directive (AHD) | Yes — legally binding | 2 witnesses (1 must be a JPs or lawyer) |
| Tasmania | Guardianship and Administration Act 1995 | Enduring Guardianship; no standalone ACD statute | Common law recognition | Witnessed appointment of enduring guardian |
| Northern Territory | Advance Personal Planning Act 2013 | Advance Personal Plan | Yes — legally binding | 2 witnesses (1 must be an authorised person) |
| ACT | Medical Treatment (Health Directions) Act 2006 | Health Direction | Yes — legally binding | 2 witnesses |
Clinical pearl — jurisdictional portability: An ACD completed in one Australian state or territory may not automatically be recognised in another. When a patient transfers interstate (e.g., to a specialist centre), clinicians should verify the validity of the document under local law or recommend completion of a jurisdiction-compliant ACD. The ACSQHC's National Consensus Statement: Essential Elements for Safe and High-Quality End-of-Life Care recommends documenting ACP in a nationally accessible format where possible.
Documentation Best Practice
- Use the jurisdiction-appropriate form (e.g., Victorian ACD form, Queensland AHD form).
- Record the date of the conversation, participants, and key decisions discussed.
- Ensure the document is dated, signed by the patient (or their mark), and witnessed as required.
- Upload to the My Health Record where the patient has consented.
- Provide copies to the patient, their SDM, their GP, relevant specialists, and the aged-care facility if applicable.
- For patients in residential aged care, ensure the ACD is flagged in the facility's clinical information system and physically accessible in the resident's file (not locked in a separate office).
- Ambulance services in most states now accept electronically stored or clearly labelled hard-copy ACDs / NFR orders — confirm local requirements with the relevant state ambulance service.
Electronic storage tip: Most Australian clinical software (Best Practice, Medical Director, Communicare) includes ACP templates that can be flagged in the patient's summary. Use the dedicated ACP or "Advance Directive" field, not just free text in progress notes, to ensure visibility during clinical handover.
Substitute Decision-Maker (SDM)
What Is a Substitute Decision-Maker?
A Substitute Decision-Maker (SDM) is a person authorised to make medical treatment decisions on behalf of an individual who has lost decision-making capacity. The SDM should ideally be someone who knows the person well, understands their values, and is willing and able to advocate for their expressed wishes — not to impose their own preferences.
Types of SDM
Tier 1
Patient-Appointed SDM
Formally appointed by the person while they had capacity (e.g., Enduring Power of Guardianship in Victoria, Advance Health Directive appointment in Queensland, Enduring Power of Attorney (Medical) in SA). This person's authority is activated upon loss of capacity.
Highest priority — must be respected
Tier 2
Statutory Default SDM
When no formal appointment exists, most jurisdictions define a hierarchy: typically spouse/partner → adult child → parent → sibling → close friend or carer. The exact hierarchy varies by state/territory.
Applies when no formal appointment exists
Tier 3
Appointed Guardian or Tribunal Decision
When no suitable person is available or disputes arise, the relevant guardianship tribunal (e.g., VCAT, NCAT, QCAT, SACAT) or Public Guardian may appoint a decision-maker. This may be a professional guardian.
Last resort — court/tribunal involvement
Role and Responsibilities of the SDM
- Make decisions that the person would have made if they had capacity (the "substituted judgment" standard).
- Where the person's wishes are unknown, act in the person's "best interests" considering their values, cultural background, and any known preferences.
- Consent to or refuse medical treatment on the person's behalf within the scope of their authority.
- Be consulted by the treating team before significant treatment decisions are made.
- The SDM cannot demand treatment that is clinically inappropriate or not medically indicated — the treating clinician retains clinical decision-making authority.
Supporting the SDM
Being an SDM can be emotionally distressing. Clinicians should:
- Ensure the SDM understands the patient's condition, prognosis, and treatment options.
- Provide written information and allow time for questions.
- Offer referral to counselling, social work, or pastoral care services.
- Reassure the SDM that their role is to represent the patient's wishes, not to bear the burden of the decision alone.
- Document the SDM consultation in the medical record, including the decision reached and the rationale.
Disputes between SDMs and treating teams: If the SDM requests treatment the clinical team considers non-beneficial or harmful, clinicians should seek ethics consultation, hospital legal counsel, or escalate to the relevant guardianship tribunal. Do not provide treatment solely on the basis of SDM demand if it falls outside accepted clinical standards.
Communication of ACP
Why Communication Is Critical
An ACP that is not communicated to treating clinicians and services is effectively useless. Australian studies consistently show that the primary barrier to honouring ACP is not the absence of a plan — it is that the plan is unknown to the clinicians making treatment decisions at the point of care. Effective communication requires systemic processes, not just individual diligence.
Communication Pathways
1
GP / Primary Care
The GP is the most important repository of ACP. Document ACP in the clinical software's designated field, upload to My Health Record, and include in referral and discharge correspondence.
2
Hospital Teams
Include ACP documentation in hospital admission paperwork, handover (ISBAR format), and discharge summaries. Emergency departments should have processes to identify patients with existing ACP at triage.
3
Residential Aged Care
Ensure the ACD is physically in the facility file (or flagged electronically), the care plan reflects ACP decisions, and all staff including after-hours locum GPs can access it.
4
Ambulance / Emergency Services
Most state ambulance services accept clearly labelled ACD / NFR documents at the bedside or fridge-magnet programs. Confirm local arrangements (e.g., Ambulance Victoria's Recommended Care Plan, NSW Ambulance electronic records).
5
Specialist and Allied Health
Palliative care, oncology, renal, respiratory, and cardiology teams should be informed of ACP, especially when treatment decisions (e.g., dialysis, chemotherapy, surgery) intersect with the patient's goals of care.
6
My Health Record
With patient consent, upload the ACD to the My Health Record. This provides interstate accessibility and visibility to all registered providers. Use the "Advance Care Planning" document type.
Clinical Handover and ACP
ACP information should be included in every clinical handover. The ACSQHC's Omnibus Standard: Clinical Deterioration and the National Safety and Quality Health Service (NSQHS) Standards require that goals-of-care and resuscitation status are communicated at every transition of care.
- Admission: Ask about ACP at the time of hospital admission; document in the admission clerking.
- Transfer between wards / facilities: Include ACP status in the handover checklist (ISBAR or equivalent).
- Discharge: Include ACP summary in the discharge letter to the GP and to the receiving facility.
- Clinical deterioration: When activating a Medical Emergency Team (MET) call or initiating goals-of-care discussions, review existing ACP documentation first.
Communication checklist for GPs: When a patient with ACP is referred to hospital, include the ACP status in the referral letter. When the patient is discharged back to your care, check the discharge summary for any changes to goals of care, resuscitation status, or ACP. Update your records and those of any involved aged-care facility accordingly.
Barriers to Effective Communication
Clinical Triggers for ACP Initiation
ACP is appropriate for all adults but is most impactful when initiated in response to identifiable clinical triggers. The following prompt list is adapted from the Gold Standards Framework (UK) and Australian palliative care guidelines:
| Trigger / "Surprise Question" | Action |
|---|---|
| "Would I be surprised if this patient died in the next 12 months?" — No | Initiate or review ACP within current or next consultation |
| Diagnosis of advanced or metastatic cancer | Offer ACP at a stable outpatient visit; involve oncology and palliative care |
| NYHA Class III–IV heart failure or recent hospitalisation for HF | Initiate ACP; discuss prognosis and treatment trajectory with cardiology |
| FEV₁ <30% predicted or home oxygen use | Initiate ACP; discuss acute exacerbation management preferences |
| eGFR <15 mL/min not on dialysis (or declining on dialysis) | Offer ACP including dialysis withdrawal discussions where appropriate |
| Moderate–severe dementia (CDR ≥2) or rapid cognitive decline | If ACP not yet completed, discuss with family/SDM and document any prior expressed wishes |
| New admission to residential aged care | Complete ACP within first month; review annually or after significant change |
| Patient or family request | Respond promptly; schedule dedicated ACP consultation |
Special Populations
Pregnancy
While ACP is not routinely applicable to healthy pregnancies, it is essential for pregnant women with serious pre-existing conditions (e.g., advanced cancer, severe cardiac disease, cystic fibrosis). ACP should address the balance between maternal autonomy and fetal wellbeing, and clarify the woman's wishes regarding life-sustaining treatment. The SDM and obstetric team should be involved. In Victoria and Queensland, the ACD may include refusal of specific treatments even if refusal may result in death; health professionals must respect a valid ACD unless a specific exclusion applies.
Paediatrics
Children under 18 years cannot generally complete a legally binding ACD. However, age-appropriate participation in ACP conversations is encouraged and supported by the RACP and Paediatric Palliative Care guidelines. Parents / guardians are the decision-makers for children, and their decisions should be informed by the child's expressed wishes, developmental stage, and best interests. For adolescents (typically ≥16 years), some jurisdictions (e.g., Victoria) recognise mature minors who can demonstrate Gillick competence. Specialist paediatric palliative care services should be involved for children with life-limiting conditions.
Elderly / Frail Aged
ACP should be offered to all older adults, particularly those with multimorbidity, frailty, cognitive decline, or those entering residential aged care. The Aged Care Quality Standards (Standard 2) require that ACP is facilitated for all aged-care consumers. For patients with dementia, ACP should ideally be initiated in the early stages when capacity is preserved. When capacity is lost, any prior ACD should be respected. A frailty assessment (e.g., Clinical Frailty Scale) can help guide conversations about treatment intensity and realistic goals of care.
Renal Impairment
Patients with end-stage kidney disease (ESKD) face complex treatment decisions including whether to commence, continue, or withdraw dialysis. ACP for renal patients should be initiated well before dialysis is needed (ideally at eGFR <20 mL/min) and should include discussion of conservative kidney management as an alternative to dialysis. The Kidney Health Australia CARI guidelines and the ANZSN recommend integrating ACP into routine nephrology care. Dialysis withdrawal is a legitimate ACP decision and should be supported with appropriate palliative care.
Hepatic Impairment
Patients with decompensated liver disease (Child-Pugh C) or hepatocellular carcinoma should have ACP initiated early. Hepatic encephalopathy can rapidly impair decision-making capacity. For patients being assessed for liver transplantation, ACP should be completed prior to listing, addressing both the possibility of death on the waiting list and post-transplant quality of life. SDMs should be aware of the rapid trajectory of liver failure.
Immunocompromised
Patients who are immunocompromised (e.g., organ transplant recipients, those on chemotherapy, people with advanced HIV) may experience rapid clinical deterioration. ACP should be completed during stable periods. For transplant patients, ACP should address re-transplantation wishes, withdrawal of immunosuppression, and dialysis. For people with advanced HIV on antiretroviral therapy, the conversation should include treatment preferences in the event of treatment failure, opportunistic infection, or concurrent serious illness.
Aboriginal and Torres Strait Islander Health Considerations
Aboriginal and Torres Strait Islander Health
Advance care planning for Aboriginal and Torres Strait Islander peoples requires a culturally safe, community-led approach that acknowledges the impacts of colonisation, intergenerational trauma, and ongoing systemic barriers to health-care access. Standard Western ACP models may not align with Indigenous concepts of health, autonomy, family, and country.
Key Considerations
Recommended Approaches
- Use Aboriginal Health Practitioners (AHPs), Aboriginal Liaison Officers (ALOs), and Aboriginal Community Controlled Health Organisations (ACCHOs) to lead or co-facilitate ACP conversations.
- Employ yarning circles and storytelling approaches rather than structured questionnaire formats.
- Develop locally specific ACP resources with community input — do not impose urban-centric models on remote communities.
- Ensure ACP processes are integrated with Closing the Gap targets for chronic disease management and palliative care access.
- Refer to the Palliative Care Australia resource "Providing Palliative Care for Aboriginal and Torres Strait Islander Australians" for detailed guidance.
- Where possible, involve Elders and family in ACP conversations, with the patient's consent and cultural guidance.
Cultural safety is paramount: Do not assume that all Aboriginal and Torres Strait Islander people share the same cultural practices or beliefs. There is enormous diversity across communities. Always ask, listen, and follow the lead of the individual, their family, and their community health workers. Never proceed with ACP if the patient or family is not ready.
📚 References
- 1. Australian Commission on Safety and Quality in Health Care (ACSQHC). National Consensus Statement: Essential Elements for Safe and High-Quality End-of-Life Care. Sydney: ACSQHC; 2015.
- 2. Advance Care Planning Australia. National Framework for Advance Care Planning. Austin Health, Melbourne; 2011 (updated 2023). Available at: advancecareplanning.org.au.
- 3. Detering KM, Hancock AD, Reade MC, Silvester W. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ. 2010;340:c1345.
- 4. Australian Institute of Health and Welfare (AIHW). Palliative care services in Australia. Cat. no. HWV 79. Canberra: AIHW; 2023.
- 5. Palliative Care Australia. National Palliative Care Strategy 2018. Canberra: Australian Government Department of Health; 2018.
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- 8. Respecting Patient Choices, Austin Health. Advance Care Planning Facilitator Training Program. Melbourne: Austin Health; 2023.
- 9. Kidney Health Australia. Chronic Kidney Disease (CKD) Management in Primary Care. 4th ed. Melbourne: Kidney Health Australia; 2020.
- 10. Australian and New Zealand Society of Nephrology (ANZSN). Consensus guidelines on conservative kidney management. Nephrology. 2020;25(S1):1–12.
- 11. Palliative Care Australia. Providing Palliative Care for Aboriginal and Torres Strait Islander Australians: A Guide for Health Professionals. Deakin, ACT: Palliative Care Australia; 2019.
- 12. Australian Institute of Health and Welfare (AIHW). Aboriginal and Torres Strait Islander Health Performance Framework: Summary report. Canberra: AIHW; 2023.
- 13. Advance Care Planning Australia. Jurisdictional Legislation Guide: Advance Care Directives across Australia. Austin Health, Melbourne; 2023. Available at: advancecareplanning.org.au.
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- 17. Program of Experience in the Palliative Approach (PEPA). Advance Care Planning Education Resources. Brisbane: PEPA, Queensland University of Technology; 2023.
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