Advance care planning — ACD, goals of care, substitute decision-maker

Definition / Overview

Advance care planning (ACP) is an ongoing, structured process through which a person, while still competent, discusses and documents their values, preferences, and wishes for future medical care. It is particularly relevant in Australian general practice because GPs are best placed to initiate and sustain these conversations over time, within an established therapeutic relationship.

Key legal instruments that arise from ACP discussions include:

• Advance care directives (ACDs): Written documents recording a person's treatment preferences and/or refusals.
• Enduring power of attorney (EPOA): A legal appointment of a trusted person (the attorney) to make decisions on behalf of someone who has lost capacity.
• Guardianship: A formal, tribunal-appointed arrangement granting decision-making authority to a guardian when no valid EPOA exists.

These instruments differ in their legal weight, scope, and the process required to establish them. GPs must understand each well enough to initiate conversations, provide information, and refer appropriately.

Pathophysiology or Mechanism

Why Capacity Matters

Capacity is not a fixed trait; it is decision-specific and time-specific. A person may retain capacity for simple decisions (e.g. accepting pain relief) while lacking capacity for complex ones (e.g. consenting to major surgery). The legal test in Australia requires that the person can:

1. Understand the relevant information
2. Retain that information long enough to make a decision
3. Weigh and use the information in reaching a decision
4. Communicate that decision by any means

ACP instruments are only valid if completed while the person has capacity. Once capacity is lost, the window to document preferences or appoint an attorney closes. This is why early, proactive conversations are essential, particularly in:

• Progressive neurodegenerative conditions (dementia, Parkinson's disease, motor neurone disease)
• Frailty syndromes with anticipated decline
• Any patient with a life-limiting diagnosis

Clinical Features / When to Raise ACP

Triggers for Initiating ACP Conversations in General Practice

There is no single "right" time, but the following situations should prompt the GP to open the conversation:

• Patients aged $\geq 75$ years (75+ Health Assessment, MBS item 715 or 705)
• New diagnosis of a progressive or life-limiting condition
• Hospitalisation or emergency presentation in the preceding months
• Entry into residential aged care or increased community care needs
• Patient or family members raising concerns about future care
• Completion of a GP Management Plan (GPMP) or Team Care Arrangement (TCA) for a chronic condition

The GP's Role

The GP does not need to complete the entire ACP process in one consultation. ACP is iterative, and multiple shorter conversations are often more effective than one prolonged session. The GP's responsibilities include:

• Assessing and documenting current capacity
• Raising ACP at appropriate opportunities
• Providing patient and carer education about available instruments
• Facilitating referral to social workers, legal services, or specialist aged care teams
• Documenting completed ACDs, EPOA appointments, and DNACPR decisions in the patient record and ensuring these are accessible (e.g. stored in My Health Record)

Australian Legal Framework

State and Territory Variation

Legislation governing ACP, EPOA, and guardianship is state and territory-based in Australia. GPs must be familiar with the laws of their jurisdiction. Despite differences in terminology and procedural requirements, the core principles are consistent nationally.

Key exam point: Regardless of jurisdiction, always check whether an existing advance directive or EPOA is current, signed, witnessed appropriately, and registered if required. An unregistered or improperly witnessed document may not be legally valid.

Advance Care Directives

What They Can Record

Advance directives can include:

• Instructional directives: Specific refusals or acceptances of defined treatments (e.g. refusal of mechanical ventilation, refusal of artificial nutrition).
• Values and goals statements: Broader statements about what matters to the person, preferred place of care, acceptable quality of life thresholds. These are not legally binding instructions but guide decision-making.

Legal Weight

• A valid advance directive refusing a specific treatment is legally binding on treating clinicians in most Australian jurisdictions, provided it is applicable to the situation at hand.
• Statements of wishes or values are not legally binding but carry significant moral and clinical weight.
• An advance directive cannot compel clinicians to provide futile or clinically inappropriate treatment.

Practical Points for GPs

• Encourage patients to share copies with their GP, family, and hospital.
• Recommend uploading to My Health Record for accessibility in emergency settings.
• Advise that directives should be reviewed regularly, particularly after significant health events or changes in circumstances.
• A directive made when capacity was intact cannot be overridden simply because family members disagree.

Enduring Power of Attorney (EPOA)

Types of EPOA

Medical EPOA (also called "enduring power of attorney for personal/health matters" depending on jurisdiction) is the type most relevant to clinical practice. The attorney:

• Can consent to or refuse treatment on the patient's behalf
• Must act in the patient's best interests and in accordance with any known wishes
• Cannot authorise treatment that the patient explicitly refused in a valid advance directive
• May need specific authorisation within the document to make decisions about life-sustaining treatment

Validity Requirements

For an EPOA to be legally operative:

1. The document must have been signed while the person had capacity.
2. It must be witnessed correctly (witness requirements vary by state; generally a solicitor, justice of the peace, or other prescribed witness).
3. It must be registered with the relevant state authority where required.
4. The principal must now lack capacity (for personal/medical decisions).

GP Responsibilities

• Ask all patients, especially those $\geq 65$ years or with progressive conditions, whether an EPOA has been appointed.
• Document the name and contact details of the attorney in the patient record.
• If a patient presents without capacity and no EPOA exists, do not assume the next of kin has automatic legal authority (this varies by jurisdiction and is not uniformly the case in Australia).
• If the attorney appears to be acting contrary to the patient's best interests, the matter should be escalated to the state guardianship tribunal.

Guardianship

When Guardianship Applies

Guardianship is a tribunal-appointed arrangement used when:

• A person lacks decision-making capacity, and
• No valid EPOA exists, or the existing EPOA is disputed/inadequate.

A guardian is appointed by the relevant state or territory tribunal and is granted authority to make personal or health decisions on behalf of the person. This process is more formal and time-consuming than EPOA, which is why proactive EPOA planning is preferable.

Who Can Apply

Any person with a genuine interest in the welfare of the person lacking capacity can apply to the tribunal. This includes family members, carers, or treating health professionals.

The GP's Role in Guardianship

• Provide clinical documentation regarding the patient's diagnosis and capacity status to support tribunal proceedings.
• Complete the required medical certificate or report (form requirements vary by jurisdiction).
• Continue to treat the patient and communicate with the appointed guardian as the lawful substitute decision-maker.
• Note that the guardian's authority is limited to the scope granted by the tribunal.

Management: Facilitating ACP in General Practice

Step-by-Step Approach

1. Screen and identify: At the 75+ Health Assessment, GPMP review, or at any appropriate consultation, ask whether the patient has considered future care preferences.
2. Assess capacity: Confirm the patient currently has capacity before proceeding with formal documents.
3. Educate: Explain the purpose of ACDs, EPOA, and guardianship in plain language. Written resources from state health departments or organisations such as Advance Care Planning Australia (ACPA) are useful.
4. Explore values and goals: Use open questions to understand what matters to the patient, e.g. "What does a good day look like for you?" or "Are there circumstances in which you would not want life-prolonging treatment?"
5. Document wishes: Record the conversation, the patient's stated values, and any completed instruments in the medical record.
6. Facilitate legal steps: Refer to a solicitor, state-based planning service, or social worker if the patient wishes to formalise an EPOA or advance directive.
7. Review and update: Flag for review at least annually, or after any significant health event or change in circumstances.
8. Share documentation: Encourage the patient to share documents with family, the hospital system, and via My Health Record.

Communication Tips

• Allow adequate time: Schedule a longer consultation or a dedicated ACP appointment. Do not try to complete ACP at the end of an unrelated consultation.
• Involve family where the patient consents: Family members often have questions and concerns; including them early reduces conflict at the bedside later.
• Acknowledge uncertainty: It is appropriate to explain that exact disease trajectories are often unpredictable, and that the purpose of ACP is to capture values rather than anticipate every scenario.
• Do not conflate DNACPR with ACP: Advance care planning encompasses far more than CPR decisions. Avoid framing the entire conversation around resuscitation, which can feel confronting and limit broader discussion.

MBS Considerations

• The 75+ Health Assessment (MBS item 705) includes a component addressing future care planning.
• GPMP (MBS item 721) and TCA (MBS item 723) reviews are appropriate contexts to revisit ACP.
• There is no specific MBS item solely for ACP consultation time; however, time spent can be incorporated into a standard consultation item with appropriate documentation.

Complications and Special Considerations

Dementia and Progressive Neurological Conditions

• ACP should be initiated early, ideally at or shortly after diagnosis, while the patient retains capacity.
• Patients with early dementia may still have capacity for ACP decisions even if they lack capacity for other complex decisions.
• As dementia progresses, revisit previously documented wishes; if the patient's expressed preferences change, reassess capacity and document carefully.

Culturally and Linguistically Diverse (CALD) Patients

• Concepts of individual autonomy and advance decision-making may conflict with collective family decision-making norms in some cultures.
• Use professional interpreters; avoid relying on family members to interpret ACP discussions.
• Frame conversations around family and community values where this aligns with the patient's own preferences.

Aboriginal and Torres Strait Islander Patients

• ACP may need to be approached differently; concepts of death and dying, and who is appropriate to be involved in decisions, vary across communities.
• Involve the patient's support network and community health workers with the patient's consent.
• Be aware that speaking directly about death may be culturally inappropriate in some communities; use indirect language and follow the patient's lead.
• The Close the Gap program and Aboriginal Medical Services can support holistic care coordination including ACP for Indigenous patients.

Patients Without Family or Social Support

• Isolated patients are at particular risk of lacking a proxy decision-maker if capacity is lost.
• Proactively encourage EPOA appointment even in younger patients with life-limiting illness.
• If no EPOA exists and the patient loses capacity, the public guardian (a state-appointed officer) can be appointed as guardian of last resort.

Conflict Between Attorney and Clinical Team

• If the medical team believes an attorney is not acting in the patient's best interests, the matter should be referred to the relevant state guardianship tribunal urgently.
• Document all communications and clinical reasoning clearly.
• In emergencies where the appropriate course of action is unclear, err toward providing treatment while seeking legal clarification.

Long-term Care and Ongoing GP Responsibilities

• Treat ACP as a living process, not a one-time administrative task. Patients' values and priorities change over time.
• At each relevant review, ask: "Has anything changed in how you think about your future care?"
• Ensure all completed ACP documents are filed prominently in the medical record and flagged for treating teams and locums.
• Coordinate with residential aged care facility (RACF) staff and community nurses to ensure ACP documentation is accessible across care settings.
• Following a patient's death, the GP's role may include supporting the family through grief and explaining how the patient's documented wishes guided their care.

Summary of Key Points for the Exam

• ACP is a process, not a document; the GP initiates and sustains it over time.
• EPOA (personal/medical) is only active when the patient lacks capacity.
• Legislation is state and territory-based; know your jurisdiction's requirements.
• A valid advance directive refusing treatment is legally binding.
• If no EPOA exists and capacity is lost, guardianship via tribunal is required.
• Raise ACP at the 75+ Health Assessment, GPMP/TCA reviews, and after any significant health event.
• Document thoroughly; upload to My Health Record; share with relevant parties.

Sources

• MBS Online (Medicare Benefits Schedule)
• RACGP Red Book, Guidelines for preventive activities in general practice
• Therapeutic Guidelines (eTG)