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Capacity and Consent

Last updated 1 Jun 2026 Β· Palliative care

πŸ“‹ Key Information Summary

πŸ“‹
  • Decision-making capacity is decision-specific, time-specific, and domain-specific β€” a patient may have capacity for simple decisions but not complex ones.
  • Capacity is presumed unless there is reasonable evidence to the contrary; the burden of proving incapacity lies with the clinician challenging it.
  • The four-abilities framework (understand, appreciate, reason, communicate a choice) underpins capacity assessment in all Australian jurisdictions.
  • Supported decision-making must be attempted before resorting to substitute decision-making β€” aligning with the National Decision-Making Principles (COAG).
  • Substitute decision-making legislation varies across Australian states and territories; clinicians must know the hierarchy of decision-makers in their jurisdiction.
  • Advance care planning (ACP) documents β€” including Advance Care Directives (ACDs) β€” are legally binding in all Australian jurisdictions, though statutory frameworks differ.
  • Capacity may fluctuate in palliative care due to delirium, medications (opioids, benzodiazepines), disease progression, or metabolic disturbance β€” reassess regularly.
  • Use validated tools such as the ACE (Aid to Capacity Evaluation) or MacCAT-T to structure and document assessment.
  • Referral to psychiatry, geriatrics, or the state/territory Public Guardian is appropriate when capacity is contested or complex.
  • All capacity assessments, discussions with substitute decision-makers, and advance care planning conversations must be thoroughly documented in the medical record.
  • Aboriginal and Torres Strait Islander patients may conceptualise decision-making through collective and family-based models β€” cultural consultation is essential.
  • In palliative emergencies, treatment that is clearly in the patient's best interests may proceed while a formal capacity assessment and substitute decision-making process is arranged.

Introduction & Australian Context

Capacity and consent are foundational to ethical palliative care practice. Every intervention β€” from initiating opioid analgesia to forgoing life-sustaining treatment β€” requires valid consent from a person with decision-making capacity, or a lawful process when capacity is absent. In the palliative care setting, capacity assessment carries particular gravity: decisions frequently involve withholding or withdrawing treatment, accepting comfort-focused care, and planning for end of life.

In Australia, no single national statute governs capacity and consent for medical treatment. Instead, a patchwork of state and territory guardianship and advance care planning legislation applies, unified by the National Decision-Making Principles endorsed by the Council of Australian Governments (COAG) in 2018. These principles affirm that all persons should be supported to make their own decisions wherever possible, and that any restriction on decision-making must be the least restrictive necessary.

The Australian Institute of Health and Welfare (AIHW) estimates that approximately 50,000 Australians receive specialist palliative care each year, with many more receiving generalist palliative support in primary care, aged care, and hospital settings. Among these patients, cognitive impairment β€” whether from disease progression, delirium, or treatment effects β€” is common, making capacity assessment a daily clinical task. Studies in Australian palliative care units report that up to 30–40% of inpatients have fluctuating or impaired capacity at any given time.

This section provides a structured approach to capacity assessment, supported and substitute decision-making, and documentation β€” grounded in Australian law, professional standards, and best-practice palliative care principles.

ℹ️
Key legislative references: Guardianship Act 1987 (NSW), Guardianship and Administration Act 1986 (Vic), Guardianship and Administration Act 2000 (Qld), Guardianship and Administration Act 1990 (WA), Advance Care Directives Act 2013 (SA), Guardianship and Administration Act 1995 (Tas), Guardianship and Management of Property Act 1991 (ACT), Advance Personal Planning Act 2013 (NT).

Capacity Assessment

Legal Presumption of Capacity

In all Australian jurisdictions, every adult is presumed to have decision-making capacity unless there is reasonable evidence to the contrary. This presumption cannot be displaced merely because a patient has a particular diagnosis (e.g., dementia, intellectual disability, mental illness), is elderly, or makes a decision that clinicians consider unwise. The focus must always be on the process of decision-making, not the outcome.

The Four-Abilities Framework

Capacity assessment requires that the person demonstrates four functional abilities in relation to a specific decision at a specific time:

Ability Description Assessment Questions
Understand Can comprehend the relevant information about the proposed treatment, including its nature, purpose, and likely effects "Can you tell me in your own words what we are discussing?" "What are the benefits and risks of this treatment?"
Appreciate Can recognise how the information applies to their own situation β€” that the proposed treatment is relevant to them personally "Do you understand that this applies to you and your current illness?" "What do you think will happen if you do / do not have this treatment?"
Reason Can weigh the risks and benefits and engage in a logical process to arrive at a decision "How did you reach this decision?" "Can you compare the options available to you?"
Communicate a choice Can express a clear and consistent decision by any means (verbal, written, gestural, assistive technology) "What would you like to do?" The choice must be consistent and sustained, though it may change over time.

Decision-Specific and Time-Specific Nature of Capacity

Capacity is not a global attribute. A patient may have capacity to consent to a simple blood test but lack capacity to decide whether to forgo chemotherapy. Capacity must be assessed in relation to the specific decision at hand, and at the specific time the decision is needed. In palliative care, where delirium, fatigue, medication effects, and disease progression cause frequent fluctuations, reassessment is essential β€” particularly before major decisions.

⚠️
Fluctuating capacity in palliative care: A patient who lacks capacity in the morning when sedated may regain capacity in the afternoon when analgesic levels are lower. Always reassess at different times of day and optimise reversible contributors (pain, delirium, medications) before concluding incapacity.

Validated Assessment Tools

Essential Aid to Capacity Evaluation (ACE) Eight-item structured questionnaire covering understanding, appreciation, reasoning, and expression of choice. Widely used in Australian emergency and palliative settings. Free to use, takes 10–20 minutes.
Available MacCAT-T (MacArthur Competence Assessment Tool for Treatment) Semi-structured interview assessing understanding, appreciation, and reasoning. Gold-standard psychometric properties but requires training and 15–20 minutes to administer. Suitable for complex or contested decisions.
Available MMSE / MoCA Cognitive screening tools (Mini-Mental State Examination, Montreal Cognitive Assessment). Not capacity assessment tools β€” a low score does not equate to incapacity, and a normal score does not guarantee capacity. Use as adjuncts only.
Available AMT-4 / AMT-10 (Abbreviated Mental Test) Brief bedside cognitive screen useful for detecting delirium in palliative care inpatients. Score ≀ 6/10 on AMT-10 should prompt formal capacity assessment.

When to Seek Specialist Assessment

  • Contested capacity β€” patient, family, and clinical team disagree
  • High-stakes decisions β€” withdrawal of life-sustaining treatment, refusal of blood products, voluntary assisted dying (where legislatively available)
  • Underlying psychiatric comorbidity (e.g., major depression, psychosis) that may be treatable
  • Suspected undue influence or coercion from family or carers
  • Patients under 18 β€” refer to paediatric-specific capacity/gillick competence frameworks
  • Patients subject to mental health legislation (e.g., involuntary treatment orders)

Supported Decision-Making

Principles

The National Decision-Making Principles (COAG 2018) establish that all persons, regardless of disability or cognitive impairment, have the right to participate in decisions affecting their lives. Supported decision-making (SDM) is the preferred approach β€” it aims to assist the person to make and communicate their own decision, rather than having someone else decide on their behalf.

βœ…
Least restrictive principle: Before concluding that a patient lacks capacity and appointing a substitute decision-maker, clinicians must demonstrate that all reasonable steps to support the patient's own decision-making have been taken and have been unsuccessful.

Practical Strategies for Supported Decision-Making

1
Optimise the Environment
Conduct assessments at the best time of day for the patient. Minimise distractions, ensure adequate lighting, manage pain and nausea, allow the patient to wear hearing aids and glasses.
2
Simplify Information
Use plain language, avoid medical jargon. Provide written summaries. Use visual aids or diagrams. Break complex decisions into smaller steps.
3
Involve Trusted People
Allow the patient to nominate a support person β€” a family member, friend, or independent advocate β€” to assist with communication and comprehension. The support person helps the patient decide, but does not decide for them.
4
Give Adequate Time
Do not rush. Allow multiple discussions over days if needed. Revisit decisions at different times to confirm consistency. In palliative care, this may require planning ahead where clinical trajectory permits.
5
Use Communication Aids
For patients with aphasia, hearing impairment, or limited English, use professional interpreters (not family members for medical interpretation), communication boards, picture resources, or augmentative and alternative communication (AAC) devices.

Supported Decision-Making vs Substitute Decision-Making

Feature Supported Decision-Making Substitute Decision-Making
Who decides? The patient, with assistance Another person, on the patient's behalf
Capacity required? The patient may have partial or fluctuating capacity Formal finding of incapacity for the specific decision
Legal basis National Decision-Making Principles; inherent in all guardianship legislation State/territory guardianship and administration acts; powers of attorney legislation
When to use First-line approach for all patients with impaired capacity Only when supported decision-making has been tried and has failed
Documentation Record strategies used and patient's response Formal capacity finding, identification of lawful substitute decision-maker

Substitute Decision-Making

When Is Substitute Decision-Making Required?

Substitute decision-making is invoked when a patient lacks capacity for a specific decision after all reasonable supported decision-making strategies have been attempted, and a clinical decision cannot be deferred. The substitute decision-maker (SDM) must act in accordance with any known wishes of the patient (including advance care directives) and, where wishes are unknown, in the patient's best interests.

Hierarchy of Decision-Makers by Jurisdiction

The hierarchy of substitute decision-makers varies across Australian states and territories. The table below provides a general guide β€” clinicians should verify the specific hierarchy in their jurisdiction.

Priority General Hierarchy (varies by jurisdiction)
1 Appointed guardian (by tribunal/court) or enduring guardian
2 Enduring power of attorney (for financial/personal matters, depending on jurisdiction)
3 Spouse or domestic partner
4 Adult child (or person who has care of the adult)
5 Parent (for adults in some jurisdictions)
6 Other relative or close friend
7 Public Guardian / Public Advocate (last resort)
🚨
No SDM available? If no substitute decision-maker can be identified, or the decision is complex/contested, refer to the Office of the Public Guardian or Public Advocate in your state/territory. In urgent clinical situations, treatment in the patient's best interests (including comfort measures) should not be delayed while awaiting formal appointment.

Types of Substitute Decision-Making Arrangements

Enduring Power of Attorney (EPOA)

Appointed by the patient while they had capacity, to make decisions about personal, health, and/or financial matters if capacity is lost. The scope and activation triggers vary by jurisdiction. In some states (e.g., Victoria), a separate appointment may be needed for health decisions.

Enduring Guardianship

Appointed by the patient while they had capacity to make personal and health care decisions. Available in NSW, Tas, NT, and ACT. Not available as a separate instrument in all jurisdictions β€” in some states, EPOA covers health decisions.

Guardianship Tribunal/Court Appointment

When no private arrangement exists, or the arrangement is contested, a guardianship tribunal (e.g., NCAT in NSW, VCAT in Vic, QCAT in Qld) can appoint a guardian and/or administrator. Clinicians, family members, or the Public Advocate may apply.

Advance Care Directives (ACDs)

A written statement by the patient (while capacitous) documenting their values, preferences, and instructions for future health care. ACDs are legally binding in all Australian jurisdictions, though the level of enforceability and formal witness requirements vary.

Duties of the Substitute Decision-Maker

  • Act in accordance with the patient's known wishes, values, and preferences (including those in ACDs)
  • If wishes are unknown, act in the patient's best interests β€” considering the patient's values, cultural background, and the least restrictive option
  • Consider the patient's current wishes, even if they lack formal capacity β€” a capacitous expression of preference overrides a prior ACD in most jurisdictions
  • Consult with the treating team and, where appropriate, other family members
  • Cannot consent to certain treatments (e.g., sterilisation, experimental treatment) without tribunal approval in most jurisdictions

Special Circumstances

⚠️
Contested decisions: When the SDM's decision appears inconsistent with the patient's known wishes or best interests, or when family members disagree, escalate to the treating team's ethics committee, seek legal advice, or refer to the guardianship tribunal. Do not simply comply with the SDM if the decision appears harmful.
  • Voluntary Assisted Dying (VAD): Where state/territory VAD legislation applies (Vic 2019, WA 2021, Tas 2022, SA 2023, QLD 2023, NSW 2024), capacity is assessed under a separate, stricter statutory process β€” the patient must have decision-making capacity at the time of each request. A substitute decision-maker cannot request VAD on behalf of an incapacitated patient.
  • Refusal of life-sustaining treatment: A valid ACD refusing treatment is binding and must be followed, provided it applies to the current circumstances. If there is doubt about validity or applicability, seek tribunal guidance.

Documentation

Thorough documentation is a clinical, ethical, and legal imperative. Incomplete or absent records of capacity assessment are a major source of medicolegal risk in palliative care. The following documentation standards apply to all capacity and consent processes.

What to Document for a Capacity Assessment

Element Detail
Date, time, setting Capacity is time-specific β€” record when the assessment was conducted and by whom
The specific decision "Capacity to consent to commencement of subcutaneous morphine for pain management" β€” not a generic statement of capacity
Information provided Summarise the information given to the patient β€” diagnosis, proposed treatment, alternatives, risks, benefits
Patient's responses Direct quotes where possible, demonstrating understanding, appreciation, reasoning, and expression of choice
Supported decision-making strategies used What was done to support the patient (e.g., interpreter used, simplified language, multiple sessions, support person present)
Clinical opinion Clear statement: "In my clinical opinion, [patient name] [has / does not have] capacity to [specific decision]" with reasoning
Contributing factors Note reversible factors assessed (delirium, pain, medication effects, metabolic derangement) and actions taken
Tool used (if any) Name of validated tool (e.g., ACE) and score
Witnesses Names and roles of those present during assessment

What to Document for Consent

  • The decision made by the patient or SDM
  • Whether consent was informed (information given, patient's understanding confirmed)
  • Whether consent was voluntary (absence of coercion or undue influence)
  • If a substitute decision-maker was involved: their name, relationship, legal authority (e.g., EPOA, guardian), and confirmation that they were acting within scope
  • Any refusal of treatment β€” document the patient's stated reasons and that the consequences of refusal were explained

What to Document for Advance Care Planning

  • Date and participants in the ACP conversation
  • Patient's values, goals, and preferences discussed
  • Specific treatment preferences (e.g., CPR, intubation, artificial hydration, antibiotics)
  • Location of the ACD (copy in medical record, with patient, with SDM, uploaded to My Health Record if applicable)
  • Review date β€” ACP should be reviewed at key transitions (hospital admission, change in condition, patient request)
ℹ️
Respecting Patient Rights (NSW) / ACSQHC Standard: The Australian Commission on Safety and Quality in Health Care (ACSQHC) National Safety and Quality Health Service (NSQHS) Standards include Partnering with Consumers (Standard 2), which mandates that patients are supported to be active partners in their own healthcare, including through documentation of consent and advance care planning processes.

Special Populations

πŸ‘Ά

Paediatrics

Children under 16 may have capacity for specific decisions (Gillick / Fraser competence) β€” assessed using the same four-abilities framework adapted for developmental stage.

Parental consent is generally required for minors, but mature minors may consent independently if assessed as competent.

In paediatric palliative care, the focus is on family-centred decision-making, with the child's views given increasing weight as they mature.

Referral to hospital ethics committee or guardianship tribunal is recommended when parents refuse treatment that clinicians consider in the child's best interests.

🀰

Pregnancy

A pregnant woman with capacity has the right to refuse treatment, even if refusal may harm the fetus β€” upheld by Australian courts.

Pregnancy does not create a presumption of incapacity. Capacity assessment follows the same four-abilities framework.

In rare emergencies involving a capacitous woman who refuses treatment critical for fetal survival, seek legal advice and hospital ethics input immediately.

Document all discussions regarding treatment decisions in pregnancy with particular care.

πŸ‘΄

Older Adults

Age alone is never a basis for presuming incapacity. Cognitive screening (e.g., AMT, MoCA) should not be conflated with capacity assessment.

Older adults in residential aged care have the same rights to consent and refuse treatment as community-dwelling adults.

Delirium is extremely common in palliative care admissions in older adults β€” always assess and reverse reversible contributors before concluding incapacity.

Ensure advance care planning discussions are initiated proactively in aged care, ideally before a crisis.

🫘

Renal Impairment

Uraemic encephalopathy may impair capacity β€” particularly in patients declining or withdrawing from dialysis. Capacity assessment should be performed during a period of optimal metabolic state (post-dialysis if applicable).

Patients with end-stage kidney disease who choose to stop dialysis must be assessed as having capacity for this specific decision, and the decision should be supported with advance care planning.

Nephrology and palliative care co-management is recommended for complex decisions around dialysis withdrawal.

🫁

Hepatic Impairment

Hepatic encephalopathy (overt or covert) is a common cause of impaired capacity in advanced liver disease. Grade the severity using the West Haven criteria.

Covert hepatic encephalopathy (minimal/MHE) may impair executive function and reasoning while leaving basic understanding intact β€” formal neuropsychometric testing may be required.

Optimise hepatic encephalopathy treatment (lactulose, rifaximin) and reassess capacity when encephalopathy improves.

πŸ›‘οΈ

Immunocompromised

Immunocompromised patients (e.g., advanced HIV, post-transplant, chemotherapy) may develop CNS infections or treatment-related cognitive impairment affecting capacity.

Delirium is common in immunocompromised palliative patients β€” distinguish from dementia and medication effects by serial assessment.

In patients with HIV-associated neurocognitive disorders (HAND), capacity may be partially impaired β€” supported decision-making should be the primary approach.

Aboriginal and Torres Strait Islander Health Considerations

Aboriginal and Torres Strait Islander Health

Capacity assessment and consent processes must be culturally safe and recognise the distinct decision-making frameworks of Aboriginal and Torres Strait Islander peoples. In many communities, decision-making is a collective, family-centred process rather than an individual one. Western models of autonomous individual consent may not align with cultural norms, and imposing them without adaptation risks alienating patients and families from care.

⚠️
Cultural caution: Do not assume that a patient who defers to family in healthcare decisions lacks capacity. Collective decision-making is a cultural practice, not evidence of incapacity. Assess the patient's capacity to make decisions independently if asked, while respecting their cultural preference for shared decision-making.
Language barriers
Many Aboriginal and Torres Strait Islander patients speak English as a second, third, or fourth language. Use Aboriginal Health Practitioners (AHPs) or accredited interpreters (Aboriginal Interpreter Service in NT, Aboriginal and Torres Strait Islander Health Worker/Practitioner in other states) β€” never use family members as medical interpreters for capacity assessment. Medical concepts such as "capacity" and "consent" may not have direct equivalents in some languages.
Shame and sorry business
"Sorry business" (bereavement and mourning) and cultural obligations may affect a patient's willingness or ability to engage in decision-making at certain times. Clinicians should allow flexibility in timing of discussions and recognise that cultural factors, not pathology, may explain apparent disengagement.
Family and community decision-making
In many Aboriginal and Torres Strait Islander communities, significant health decisions are made collectively with extended family and Elders. Including family in consent discussions is not "undue influence" β€” it is culturally appropriate practice. Identify the relevant family group and facilitate collective discussions where the patient wishes.
Trust and the health system
Historical and ongoing experiences of racism and coercion in the health system mean that Aboriginal and Torres Strait Islander patients may be reluctant to engage with formal legal processes (e.g., EPOA, guardianship applications). Build trust through consistent, respectful engagement. Use Aboriginal Community Controlled Health Organisations (ACCHOs) as partners in advance care planning.
Advance care planning
Advance Care Planning Australia (ACPA) has developed culturally appropriate resources for Aboriginal and Torres Strait Islander communities. "Yarning" approaches to ACP β€” unhurried, narrative, and relational β€” are more effective than directive, form-based processes. Ensure ACP materials are available in relevant languages and visual formats.
Remote and very remote communities
Access to specialist palliative care, geriatricians, psychiatrists, and guardianship tribunals is severely limited in remote and very remote areas. The Royal Flying Doctor Service (RFDS) and telehealth services (including specialist palliative care telehealth via state-based services) may assist. Document capacity assessments thoroughly as follow-up reviews may be delayed.

Consult with local Aboriginal Health Practitioners, Aboriginal Liaison Officers, or the relevant Aboriginal Community Controlled Health Organisation when conducting capacity assessments for Aboriginal and Torres Strait Islander patients. The Palliative Care Australia (PCA) National Palliative Care Strategy and the AIHW Closing the Gap reports provide further guidance on culturally safe palliative care.

πŸ“š References

  1. 1. Council of Australian Governments (COAG). National Decision-Making Principles. Canberra: COAG; 2018.
  2. 2. Australian Commission on Safety and Quality in Health Care (ACSQHC). National Safety and Quality Health Service Standards. 2nd ed. Sydney: ACSQHC; 2021.
  3. 3. Advance Care Planning Australia. Advance Care Planning Legislation in Australia. Melbourne: Austin Health; 2023. Available from: advancecareplanning.org.au.
  4. 4. Etchells E, Darzins P, Silberfeld M, et al. Assessment of patient capacity to consent to treatment. J Gen Intern Med. 1999;14(1):27–34.
  5. 5. Grisso T, Appelbaum PS. MacArthur Competence Assessment Tool for Treatment (MacCAT-T). Sarasota, FL: Professional Resource Press; 1998.
  6. 6. Palliative Care Australia. National Palliative Care Strategy 2018. Deakin, ACT: Palliative Care Australia; 2018.
  7. 7. Australian Institute of Health and Welfare (AIHW). Palliative care services in Australia. Cat. no. HWV 79. Canberra: AIHW; 2023.
  8. 8. Nair B, Kerridge I, Dobson A, McPhee J, Saul P. Advance care planning in residential care. Australas J Ageing. 2000;19(3):133–138.
  9. 9. Royal Australian College of General Practitioners (RACGP). Advance care planning – guide for general practice. Melbourne: RACGP; 2021.
  10. 10. White BP, Willmott L, Close E, et al. Voluntary assisted dying legislation in Australia: a comparative analysis. J Law Med. 2023;30(3):609–633.
  11. 11. Doukas DJ, Hardwig J. Using the family covenant in planning end-of-life care: autonomy and the family. J Med Ethics. 2003;29(2):95–98.
  12. 12. Shahid S, Bessarab D, van Schaik KD, Aoun SM, Thompson SC. Improving palliative care outcomes for Aboriginal Australians: service providers' perspectives. BMC Palliat Care. 2013;12(1):34.
  13. 13. Department of Health and Aged Care (Cth). Guidelines for a Palliative Approach in Residential Aged Care. Canberra: Australian Government; 2006 (updated 2023).
  14. 14. National Health and Medical Research Council (NHMRC). National Statement on Ethical Conduct in Human Research. Canberra: NHMRC; 2023.
for PBS scripts. Utilise ACCHS pharmacies and Remote Area Aboriginal Health Worker programs for medication supply in remote areas. Avoid initiating benzodiazepines; support holistic pain management including community-based exercise programs.
Preventive health
Promote bone health: encourage vitamin D supplementation (1000 IU daily in deficient individuals), smoking cessation support, reduction of alcohol intake, and weight-bearing exercise. MBS Item 715 health checks provide a structured opportunity to assess bone health, screen for osteoporosis risk factors, and discuss musculoskeletal health in a culturally safe context.

Quick Reference: Differential Diagnosis at a Glance

Costovertebral dysfunction
Paracetamol Β± NSAID; manual therapy
2–6 weeks
Provocable on palpation; no red flags
Thoracic compression fracture
Paracetamol; Β± calcitonin; DXA + osteoporosis Rx
6–12 weeks healing
Elderly; osteoporosis; acute onset
ACS (posterior MI)
Aspirin 300 mg, GTN, heparin; urgent PCI
Time-critical
ECG, troponin; CV risk factors
Aortic dissection
IV labetalol; urgent CT aortogram; surgery (Type A)
Time-critical
Tearing pain; BP differential >20 mmHg
Vertebral osteomyelitis
IV antibiotics (vancomycin + ceftriaxone initially); ID consult
6 weeks IV antibiotics
Fever, elevated CRP, IV drug use
Biliary colic / cholecystitis
Paracetamol Β± morphine; lap cholecystectomy
Surgical within 72 h (cholecystitis)
RUQ/infrascapular; post-prandial; RUQ US

πŸ“š References

  1. 1. Briggs AM, Smith AJ, Straker LM, Bragge P. Thoracic spine pain in the general population: prevalence, incidence and associated factors in children, adolescents and adults. A systematic review. BMC Musculoskelet Disord. 2009;10:77.
  2. 2. National Health and Medical Research Council (NHMRC). Evidence-based management of acute musculoskeletal pain. Canberra: NHMRC; 2003 (updated 2020).
  3. 3. Australian Institute of Health and Welfare (AIHW). Aboriginal and Torres Strait Islander Health Performance Framework: Summary report 2023. Canberra: AIHW; 2023.
  4. 4. Deyo RA, Rainville J, Kent DL. What can the history and physical examination tell us about low back pain? JAMA. 1992;268(6):760–765.
  5. 5. Stochkendahl MJ, Kjaer P, Hartvigsen J, et al. National Clinical Guidelines for non-surgical treatment of patients with recent onset low back pain or lumbar radiculopathy. Europ Spine J. 2018;27(1):60–75.
  6. 6. Erwin WM, Jackson PC, Homonko DA. Innervation of the human costovertebral joint: implications for clinical back pain syndromes. J Manipulative Physiol Ther. 2000;23(6):395–403.
  7. 7. Royal Australian College of General Practitioners (RACGP). Guidelines for preventive activities in general practice. 9th edn. Melbourne: RACGP; 2018 (updated 2023).
  8. 8. Hirsch JA, Singh V, Falco FJE, et al. Thoracic facet joint interventions. Pain Physician. 2016;19(4):E581–E593.
  9. 9. Erwin WM, Jackson PC. The costovertebral joint: anatomy, biomechanics, and clinical significance in thoracic back pain syndromes. J Can Chiropr Assoc. 2003;47(2):112–120.
  10. 10. Strayer RJ, Gunnerson JM, Brown LH, et al. Aortic dissection: clinical features, diagnosis, and management. Aust Crit Care. 2019;32(2):144–153.
  11. 11. Ombregt L. A system of orthopaedic medicine. 3rd edn. Edinburgh: Churchill Livingstone Elsevier; 2013. Chapter 18: Thoracic spine.
  12. 12. Lin CC, Chen KH, Li DM, et al. Characteristics and outcomes of patients presenting with thoracic back pain to the emergency department. Emerg Med Australas. 2020;32(5):805–811.
for PBS-listed medicines at participating pharmacies.
Cultural safety
Engagement with Aboriginal Community Controlled Health Organisations (ACCHOs) is essential. Cultural safety training for non-Indigenous clinicians, use of Aboriginal Health Workers and Liaison Officers, and incorporation of traditional healing practices alongside Western medicine improve treatment adherence and outcomes. Avoidance of eye contact, respect for gender-sensitive examination practices, and understanding of sorry business protocols are critical elements of culturally safe care.
Medication adherence
Complex DMARD regimens with frequent monitoring requirements present adherence challenges. Long-acting depot injections (e.g., methotrexate SC) may improve adherence compared to oral regimens. Community pharmacy partnerships through the Indigenous Pharmacy Programmes improve medication management.
Specific conditions
Rheumatic heart disease (RHD) requires secondary prophylaxis with benzathine penicillin G (BPG) 1.2 MU IM every 3–4 weeks for a minimum of 10 years or until age 21 (whichever is longer). RHD registers (e.g., NT RHD Register) facilitate recall and follow-up. The Australian RHD Endgame Strategy targets elimination by 2031.
Referral pathways
Referral through ACCHOs and Aboriginal Hospital Liaison Officers (AHLOs) improves engagement. The Specialist Outreach Assistance Programme provides funded specialist visits to remote communities. NT, WA, and QLD have specific rheumatology outreach programmes targeting Indigenous communities.

πŸ“š References

  1. 1. Australian Institute of Health and Welfare (AIHW). Autoimmune disease in Australia. Cat. no. PHE 312. Canberra: AIHW; 2023.
  2. 2. Fraenkel L, Bathon JM, England BR, et al. 2021 American College of Rheumatology guideline for the treatment of rheumatoid arthritis. Arthritis Care Res. 2021;73(7):924–939.
  3. 3. Fanouriakis A, Kostopoulou M, Alber K, et al. 2019 update of the EULAR recommendations for the management of systemic lupus erythematosus. Ann Rheum Dis. 2019;78(6):736–745.
  4. 4. Chung SA, Langford CA, Maz M, et al. 2021 American College of Rheumatology/Vasculitis Foundation guideline for the management of antineutrophil cytoplasmic antibody-associated vasculitis. Arthritis Care Res. 2021;73(11):1583–1599.
  5. 5. Smolen JS, LandewΓ© RBM, Bijlsma JWJ, et al. EULAR recommendations for the management of rheumatoid arthritis with synthetic and biological disease-modifying antirheumatic drugs: 2022 update. Ann Rheum Dis. 2023;82(1):3–18.
  6. 6. Australian Technical Advisory Group on Immunisation (ATAGI). Australian Immunisation Handbook. Australian Government Department of Health; 2024. Available from: immunisationhandbook.health.gov.au.
  7. 7. Rheumatic Heart Disease Australia (RHDAustralia). The 2020 Australian guideline for prevention, diagnosis, and management of acute rheumatic fever and rheumatic heart disease. 3rd ed. Darwin: Menzies School of Health Research; 2020.
  8. 8. Pharmaceutical Benefits Scheme (PBS). PBS Schedule. Australian Government Department of Health. Available from: pbs.gov.au. Accessed 2024.
  9. 9. Agarwal S, Cunnington J, Nossent J. Autoimmune disease in Indigenous Australians: a systematic review. Int J Rheum Dis. 2021;24(12):1487–1498.
  10. 10. Pisetsky DS. Antinuclear antibody testing β€” misunderstood or misused? Clin Immunol. 2023;255:109717.
  11. 11. Bertsias GK, Tektonidou M, Amoura Z, et al. Joint European League Against Rheumatism and European Renal Association–European Dialysis and Transplant Association (EULAR/ERA-EDTA) recommendations for the management of adult and paediatric lupus nephritis. Ann Rheum Dis. 2012;71(11):1771–1782.
  12. 12. Ledingham J, Deighton C; British Society for Rheumatology Standards, Audit and Guidelines Working Group. Update on the British Society for Rheumatology guidelines for prescribing TNFΞ± blockers in adults with rheumatoid arthritis. Rheumatology. 2005;44(2):155–158.
  13. 13. National Health and Medical Research Council (NHMRC). National statement on ethical conduct in human research. Canberra: NHMRC; 2023 (updated).
for PBS-listed medicines at participating pharmacies.
Cultural safety
Engagement with Aboriginal Community Controlled Health Organisations (ACCHOs) is essential. Cultural safety training for non-Indigenous clinicians, use of Aboriginal Health Workers and Liaison Officers, and incorporation of traditional healing practices alongside Western medicine improve treatment adherence and outcomes. Avoidance of eye contact, respect for gender-sensitive examination practices, and understanding of sorry business protocols are critical elements of culturally safe care.
Medication adherence
Complex DMARD regimens with frequent monitoring requirements present adherence challenges. Long-acting depot injections (e.g., methotrexate SC) may improve adherence compared to oral regimens. Community pharmacy partnerships through the Indigenous Pharmacy Programmes improve medication management.
Specific conditions
Rheumatic heart disease (RHD) requires secondary prophylaxis with benzathine penicillin G (BPG) 1.2 MU IM every 3–4 weeks for a minimum of 10 years or until age 21 (whichever is longer). RHD registers (e.g., NT RHD Register) facilitate recall and follow-up. The Australian RHD Endgame Strategy targets elimination by 2031.
Referral pathways
Referral through ACCHOs and Aboriginal Hospital Liaison Officers (AHLOs) improves engagement. The Specialist Outreach Assistance Programme provides funded specialist visits to remote communities. NT, WA, and QLD have specific rheumatology outreach programmes targeting Indigenous communities.

πŸ“š References

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