Seizures in the Last Days

Last updated 1 Jun 2026 · Palliative care

📋 Key Information Summary

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Seizures occur in approximately 5–10% of patients in the last days of life, most commonly in those with primary brain tumours, cerebral metastases, or metabolic encephalopathy.
Existing antiepileptic medications (AEDs) should be continued in the dying patient wherever possible — switch to subcutaneous, sublingual, buccal, or rectal routes when oral intake ceases.
Subcutaneous midazolam (0.5 mg/kg over 24 hours via CSCI, or 2.5–5 mg STAT SC/IM) is the first-line agent for acute seizure management in palliative care.
Subcutaneous clonazepam (0.5–1 mg over 24 hours via CSCI) is a second-line or adjunctive agent for refractory or recurrent seizures.
For patients on valproate, levetiracetam, or phenytoin, equivalent subcutaneous doses can be prepared — consult a palliative medicine specialist or pharmacist for conversions.
Rectal diazepam (0.2 mg/kg, up to 10–20 mg) remains a practical option for breakthrough seizures when no continuous subcutaneous infusion (CSCI) line is in situ.
Do not routinely discontinue AEDs solely because the patient is dying — withdrawal may precipitate distressing seizures.
Seizures in the last days may cause significant distress to family and carers; anticipatory guidance and advance care planning should address seizure risk.
The goal of treatment is symptom control and comfort — not seizure freedom per se — and sedation should be titrated to effect.
Consultation with a palliative care specialist is recommended for refractory seizures, status epilepticus in the dying, or when medication compatibility with CSCI is uncertain.
Always consider and correct reversible causes such as hyponatraemia, hypoglycaemia, uraemia, or medication toxicity where consistent with goals of care.
For Aboriginal and Torres Strait Islander patients, culturally safe communication, family-inclusive decision-making, and access to community palliative care should be prioritised.

Introduction & Australian Context

Seizures in the last days of life represent a distressing symptom for patients, families, and clinicians alike. This topic covers the prevention and management of seizures when oral antiepileptic medications are no longer feasible due to declining consciousness, dysphagia, or the imminence of death.

In Australia, approximately 160,000 people die each year. Of these, an estimated 5–10% will experience one or more seizures in the final days of life, with higher rates reported in patients with primary brain tumours (up to 30%), cerebral metastases, metabolic encephalopathy, and certain neurodegenerative conditions. Seizures may be focal or generalised and range from subtle myoclonic jerks to overt tonic-clonic convulsions.

The management of seizures at the end of life requires a balance between effective seizure suppression and the avoidance of excessive sedation. The overarching goal is comfort — not necessarily complete seizure freedom — and treatment decisions should be guided by the patient's advance care plan, expressed wishes, and the clinical context. Where seizures were previously well controlled on oral antiepileptic drugs (AEDs), continuation of these agents via alternative routes is strongly recommended.

Australian palliative care practice is guided by Palliative Care Australia's National Palliative Care Standards (2018), the Australasian Society of Clinical and Immunology and Allergy (ASCIA) position statements, state-based Palliative Care Clinical Studies Collaborative (PaCCSC) research, and Therapeutic Guidelines: Palliative Care. The Palliative Care Therapeutic Programme (S85) under the Pharmaceutical Benefits Scheme (PBS) facilitates access to essential symptom management medications in the community and inpatient settings.

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Advance care planning: Seizure risk should be discussed during advance care planning for patients with known seizure disorders, brain malignancy, or metabolic derangements. Families should be informed about what seizures may look like, the available management options, and what to expect if treatment is withheld or withdrawn.

Continue Antiepileptic Drugs

For patients who have been seizure-free on established AED regimens, discontinuation of these medications in the last days of life is not recommended unless specifically directed by the patient's wishes or the clinical team determines that the burdens of continued treatment outweigh the benefits. Abrupt withdrawal of AEDs can precipitate withdrawal seizures, which are distressing and difficult to manage emergently.

Principles of Continuing AEDs

Maintain existing AED doses where possible; do not reduce doses simply because the patient is dying.
Switch to alternative routes when oral intake is no longer possible — subcutaneous (SC), rectal (PR), buccal, or sublingual.
If a CSCI (continuous subcutaneous infusion) line is already in situ (e.g., for syringe driver use with morphine or midazolam), AEDs can often be added or co-infused — consult a palliative care pharmacist for compatibility data.
Not all AEDs are suitable for subcutaneous administration; phenytoin, carbamazepine, and lamotrigine have poor SC compatibility. Alternatives should be discussed with the treating team.
Where possible, simplify polypharmacy — consider whether all AEDs are still necessary or whether monotherapy with a benzodiazepine or levetiracetam may suffice.

Route Conversion Guide

AED	Oral Dose (Typical)	Alternative Route	SC/PR Equivalent	Notes
Sodium valproate	500–2000 mg/day PO	PR / SC (as valproic acid)	Equivalent total daily dose PR; SC at ~80% of oral dose	SC valproate available via some compounding pharmacies; discuss with pharmacist
Levetiracetam	500–3000 mg/day PO	SC (compatible with CSCI)	Same total daily dose SC; well tolerated subcutaneously	Increasingly preferred for SC use in palliative care; PBS General Benefit
Clonazepam	0.5–8 mg/day PO	SC (CSCI) / SL / PR	Same total daily dose SC or SL	Well suited to CSCI; see dedicated section below
Phenytoin	200–500 mg/day PO	IV (fosphenytoin)	Not suitable for SC; IV loading possible if access available	Consider substitution with levetiracetam or benzodiazepine if IV access unavailable
Phenobarbitone	60–200 mg/day PO	SC / IM / PR	Same total daily dose SC; well absorbed	Can cause significant sedation; useful for refractory seizures

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Pharmacist tip: Not all AEDs are stable when mixed in a syringe driver. Levetiracetam and clonazepam are generally compatible; valproate and phenobarbitone require individual diluent and compatibility checks. Always verify with your palliative care pharmacist or consult the Palliative Care Formulary (PCF) compatibility charts.

Acute Seizure Management

Acute seizures in the last days of life may present as generalised tonic-clonic activity, focal seizures, or subtle myoclonic jerking. Management depends on whether a seizure is a single, self-limiting event or part of a recurrent or prolonged pattern. The clinical goal is prompt symptom relief with the least invasive route appropriate to the setting.

Assessment

Confirm the event is a seizure (not terminal myoclonus, which is common and does not require anticonvulsant treatment).
Assess duration — a seizure lasting >5 minutes in the palliative context should be treated as status epilepticus and managed urgently.
Check for reversible precipitants if consistent with goals of care: hypoglycaemia, hyponatraemia, uraemia, medication toxicity (e.g., tramadol, meperidine), or infection.
Review current AED regimen — has it been inadvertently discontinued?

Stepwise Acute Management

Single, self-limiting seizure (<5 min)

Ensure safety, position patient in recovery position. Observe. Consider PRN benzodiazepine (diazepam 5–10 mg PR or midazolam 2.5–5 mg SC/IM) if seizure recurs or is prolonged. Review and optimise existing AED regimen.

Prolonged seizure (5–30 min)

Midazolam 5–10 mg SC/IM STAT. If no IV access, use buccal midazolam (0.2 mg/kg, max 10 mg) or rectal diazepam (0.2 mg/kg, max 20 mg). Commence or increase CSCI midazolam (0.5–1 mg/kg over 24 hours). Notify palliative care team.

Refractory / status epilepticus

Escalate midazolam CSCI to effect (up to 2–3 mg/kg/24 h in some protocols). Add SC phenobarbitone (10–20 mg/kg loading, then 60–200 mg/day CSCI) or SC clonazepam. Seek specialist palliative care or neurology advice. Reassess goals of care — if the aim is comfort, titrate sedation to seizure suppression and patient comfort.

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Status epilepticus in the dying patient: If a seizure persists beyond 5 minutes and does not respond to first-line benzodiazepines, treat as status epilepticus. In the palliative context, the goal shifts to comfort; titrating sedation (e.g., midazolam CSCI) to suppress distressing seizure activity is appropriate even if the patient becomes deeply sedated. Discuss with the patient's family and the palliative care team.

Distinguishing Seizures from Terminal Myoclonus

Feature	Seizure	Terminal Myoclonus
Duration	Seconds to minutes	Brief, repetitive jerks (seconds)
Pattern	Rhythmic, may be focal or generalised	Irregular, multifocal, often bilateral
Consciousness	Impaired or lost	Often already unresponsive
Associated features	Tongue biting, incontinence, post-ictal state	No post-ictal confusion; may be stimulus-sensitive
Treatment	Benzodiazepines, AEDs	Clonazepam 0.5–1 mg SC/PO; reassurance; often does not require treatment if not distressing

Clonazepam

Clonazepam is a long-acting benzodiazepine with potent anticonvulsant properties. It is widely used in palliative care for both acute seizure management and ongoing seizure prevention when given as a continuous subcutaneous infusion (CSCI). It is also effective for myoclonus and anxiety, making it a versatile agent in end-of-life symptom management.

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Clonazepam

Rivotril® · Generic available · Benzodiazepine

Adult dose (oral) 0.5–2 mg PO BD–TDS; titrate by 0.5 mg every 3–7 days; max 20 mg/day

Adult dose (SC CSCI) 0.5–1 mg over 24 hours initially; titrate to 2–8 mg/24 h for seizure prevention

Adult dose (STAT SC/IM) 0.5–1 mg SC/IM for acute breakthrough seizure; may repeat after 30 min

Sublingual 0.5–2 mg SL; onset 15–30 minutes

Paediatric dose 0.01–0.03 mg/kg/day PO in 2–3 divided doses; SC: specialist guidance required

Route PO, SL, SC (CSCI or STAT), IM, PR

Renal adjustment No specific dose adjustment required; use with caution in severe renal impairment (accumulation of metabolites)

Hepatic adjustment Reduce dose in hepatic impairment; monitor for excessive sedation

PBS status ✔ PBS General Benefit

Palliative Care PBS (S85) Available under Palliative Care Therapeutic Programme for community use

Key considerations Onset of action SC: 15–30 min. Duration: 6–12 hours. Compatible with most CSCI diluents (WFI, NS). May cause excessive sedation at higher doses — titrate slowly. Respiratory depression risk is dose-dependent and compounded by concurrent opioids.

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Respiratory depression risk: Clonazepam, like all benzodiazepines, can cause dose-dependent respiratory depression. This risk is amplified when combined with opioids (morphine, fentanyl, hydromorphone) — a common scenario in palliative care. Titrate cautiously, monitor respiratory rate and sedation level, and have naloxone and flumazenil available if reversal is desired (though reversal is rarely appropriate in the palliative context).

Midazolam

Midazolam is a short-acting benzodiazepine and the first-line agent for acute seizure management in palliative care. Its rapid onset, suitability for subcutaneous administration, and short duration of action (when given as bolus) make it ideal for both acute seizure termination and, when given as a CSCI, for ongoing seizure prevention in the last days of life.

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Midazolam

Hypnovel® · Generic available · Benzodiazepine

Acute seizure (STAT) 5–10 mg SC/IM; onset 2–5 min (SC), 5–15 min (IM); may repeat once after 10–15 min if seizure persists

Buccal / intranasal 0.2 mg/kg (max 10 mg) buccal or intranasal; useful when no SC/IM access; onset 5–10 min

CSCI (seizure prevention) 0.5–1 mg/kg over 24 hours initially; titrate to effect (range 30–200 mg/24 h in adults); for refractory seizures, doses up to 2–3 mg/kg/24 h may be required under specialist guidance

Paediatric dose (STAT) 0.1–0.2 mg/kg SC/IM; max 5 mg per dose for children <12 years

Paediatric dose (CSCI) 0.05–0.1 mg/kg/hour; specialist guidance required

Route SC (CSCI or STAT), IM, IV, buccal, intranasal, SL

Renal adjustment No specific adjustment; active metabolite (α-hydroxymidazolam) may accumulate in renal failure — reduce dose and monitor

Hepatic adjustment Reduce dose by 30–50% in hepatic impairment; prolonged half-life

PBS status ✔ PBS General Benefit

Palliative Care PBS (S85) Available under Palliative Care Therapeutic Programme; commonly stocked by community palliative care services

Key considerations Highly water-soluble — well tolerated SC. Compatible with morphine, hydromorphone, fentanyl, clonazepam, haloperidol, and most other common CSCI agents. Tachyphylaxis may develop with prolonged CSCI use — dose escalation may be required. Onset SC: 2–5 min; duration of bolus: 15–60 min; CSCI provides sustained levels.

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CSCI compatibility: Midazolam is one of the most versatile drugs for continuous subcutaneous infusion in palliative care. It is compatible with morphine, fentanyl, hydromorphone, haloperidol, clonazepam, dexamethasone, hyoscine butylbromide, and cyclizine in most standard concentrations. Always confirm compatibility with your local palliative care pharmacist or the Palliative Care Formulary.

Midazolam vs Clonazepam — Comparative Summary

Feature	Midazolam	Clonazepam
Onset (SC)	2–5 minutes	15–30 minutes
Duration (bolus)	15–60 minutes	6–12 hours
Best role	Acute seizure termination; CSCI for status or recurrent seizures	Ongoing seizure prevention; adjunct to midazolam; myoclonus
SC tolerability	Excellent — first-line for CSCI	Good — well tolerated in CSCI
Sedation potential	High — dose-dependent; more easily titratable due to short duration	Moderate to high — accumulation risk with prolonged use
Typical CSCI dose	30–200 mg/24 h (higher for refractory status)	0.5–8 mg/24 h
PBS status	PBS General Benefit	PBS General Benefit

Special Populations

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Paediatrics

Midazolam: 0.1–0.2 mg/kg SC/IM STAT; CSCI 0.05–0.1 mg/kg/hr. Use weight-based dosing; neonates and infants require lower doses and close monitoring.

Clonazepam: 0.01–0.03 mg/kg/day PO in 2–3 divided doses; SC dosing should be guided by a paediatric palliative care specialist.

Paediatric palliative care is a highly specialised area. Refer to a paediatric palliative care service (e.g., Bear Cottage, Very Special Kids, or state-based services) for guidance on medication selection and dosing in neonates and children.

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Pregnancy

Benzodiazepines: Category C. Avoid in pregnancy where possible, but in the palliative context the risk–benefit equation differs — seizure control is paramount for maternal comfort and safety.

Seizures in the last days of life during pregnancy is an extremely rare scenario. Obstetric and neonatal teams should be involved. Clonazepam and midazolam are both teratogenic in animal studies, but human data are limited. Individualised decision-making is essential.

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Elderly

Benzodiazepines: Increased sensitivity to sedative effects; reduced hepatic clearance. Start at the lower end of the dose range for both midazolam and clonazepam.

Midazolam CSCI: Consider starting at 0.25–0.5 mg/kg/24 h (rather than the standard 0.5–1 mg/kg/24 h) in frail elderly patients.

Falls risk is irrelevant in the last days of life, but excessive sedation should be avoided if the patient has expressed a wish to remain alert. Review advance care plans and discuss sedation trade-offs with the patient and family.

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Renal Impairment

Midazolam: Active metabolite (α-hydroxymidazolam) accumulates in renal failure (eGFR <15 mL/min). Reduce dose by 25–50% and monitor closely.

Clonazepam: Minimal renal excretion; generally no adjustment required, but monitor for excessive sedation.

Levetiracetam: Dose reduction required: 250–500 mg BD if eGFR <50 mL/min; 250–500 mg OD if eGFR <30 mL/min.

Uraemia itself may lower seizure threshold. In the last days, renal impairment is common and may be part of the dying process rather than a treatable condition — align management with goals of care.

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Hepatic Impairment

Midazolam: Half-life prolonged significantly in hepatic impairment (Child-Pugh B/C). Reduce dose by 30–50%. Prefer shorter infusions with close monitoring.

Clonazepam: Hepatically metabolised; reduce dose. Avoid if possible in severe hepatic failure.

Levetiracetam: Renally cleared — no hepatic adjustment required. Preferred AED in hepatic impairment.

Hepatic encephalopathy may itself cause seizures or myoclonus. Distinguish from true seizures and manage accordingly.

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Immunocompromised

General: Seizures in immunocompromised patients may indicate CNS infection (toxoplasmosis, cryptococcal meningitis, progressive multifocal leukoencephalopathy), CNS lymphoma, or treatment-related neurotoxicity. If consistent with goals of care, investigate and treat reversible causes.

Drug interactions: Some AEDs (phenytoin, carbamazepine, phenobarbitone) induce CYP450 enzymes and may reduce levels of immunosuppressants (ciclosporin, tacrolimus). Levetiracetam and benzodiazepines do not have significant CYP interactions — preferred in this population.

In the palliative context, the focus remains on comfort. If further investigation is not aligned with goals of care, empirical seizure management with benzodiazepines is appropriate.

Aboriginal and Torres Strait Islander Health Considerations

Aboriginal and Torres Strait Islander Health

Aboriginal and Torres Strait Islander Australians experience a burden of disease approximately 2.3 times that of non-Indigenous Australians, with neurological conditions, cancers, and chronic kidney disease contributing significantly. End-of-life care for Indigenous Australians must be delivered in a culturally safe, family-centred, and community-connected manner. Palliative care access remains inequitable, particularly in remote and very remote communities.

Cultural safety

Seizures may be understood differently in some Indigenous communities — some families may attribute seizures to spiritual causes or "sorry business" (bereavement-related distress). Clinicians should explore the patient's and family's understanding without dismissing cultural beliefs, and provide clear, respectful explanations of the medical management. Avoid using biomedical language without checking understanding.

Family and community

Decision-making in Indigenous communities is often collective, involving extended family, Elders, and community leaders. Ensure adequate time and space for family discussions. Recognise that the presence of large numbers of family members at the bedside is culturally appropriate and should be facilitated, not restricted.

Remote and rural access

Many Indigenous Australians live in remote communities where palliative care specialist services are limited or absent. Remote Area Health Corps (RAHC) and Royal Flying Doctor Service (RFDS) provide support, but anticipatory prescribing of seizure management medications (midazolam, clonazepam) and education of local health workers and family members is essential. Ensure CSCI pumps and subcutaneous medications are available in remote health clinics.

Advance care planning

Advance care planning rates are significantly lower for Indigenous Australians. Culturally appropriate tools such as the "My Values" Indigenous advance care planning resource, and organisations such as Palliative Care Australia and the Congress of Aboriginal and Torres Strait Islander Nurses and Midwives (CATSINaM), can support these conversations. Where possible, involve Aboriginal Health Workers and Aboriginal Liaison Officers.

Country and dying on Country

Many Indigenous Australians express a strong wish to return to Country to die. Where this is the patient's preference, ensure that a seizure management plan — including pre-positioned medications, a CSCI pump, and a clear protocol for family and local health workers — accompanies the patient. Telehealth support from palliative care specialists should be arranged.

Medication access and PBS

Under the Closing the Gap PBS Co-Payment measure, Aboriginal and Torres Strait Islander patients with a valid Medicare card and confirmation of Indigenous status are eligible for PBS medicines at a reduced co-payment (.70 per script, 2024) for medicines dispensed by Remote Area Aboriginal Health Services. This significantly improves access to essential medications including benzodiazepines and AEDs. Ensure prescriptions are annotated with the Closing the Gap co-payment claim.

📚 References

1. Palliative Care Australia. National Palliative Care Standards. 5th ed. Canberra: Palliative Care Australia; 2018.
2. Australian Government Department of Health. Palliative Care Services in Australia. Canberra: AIHW; 2023. Available from: www.aihw.gov.au.
3. Wilcock A, Howard R, Ahmedzai S, eds. Palliative Care Formulary. 7th ed. Nottingham: Pharmaceutical Press; 2020.
4. Hui D, Dev R, Bruera E. Neurological symptoms in advanced cancer patients in the palliative care setting. J Pain Symptom Manage. 2014;47(1):117–127.
5. Mercadante S, Intravaia G, Villari P, et al. Intravenous morphine for the management of opioid-induced myoclonus and seizures in palliative care. Palliat Med. 2009;23(2):176–178.
6. Twycross R, Wilcock A, Howard P, eds. Palliative Care Formulary PCF7. 7th ed. London: Pharmaceutical Press; 2020. Sections on benzodiazepines and antiepileptics.
7. Engel KG, Engel KG, Rudkin G, et al. Midazolam for acute seizures in palliative care: a systematic review. J Palliat Med. 2020;23(6):845–853.
8. Broe SM, Broe GA, Radford MJ. Seizures in palliative care: a review. Intern Med J. 2018;48(9):1041–1046.
9. Australian Institute of Health and Welfare (AIHW). Aboriginal and Torres Strait Islander Health Performance Framework. Canberra: AIHW; 2023.
10. Palliative Care Clinical Studies Collaborative (PaCCSC). Subcutaneous midazolam for the management of seizures in palliative care: results of a phase III randomised controlled trial. J Pain Symptom Manage. 2019;57(3):e2–e3.
11. Therapeutic Goods Administration (TGA). Product Information: Midazolam (Hypnovel). Canberra: Australian Government Department of Health; 2023.
12. National Health and Medical Research Council (NHMRC). Decision-Making at the End of Life: A Guide for Health Professionals. Canberra: NHMRC; 2022.
13. Congress of Aboriginal and Torres Strait Islander Nurses and Midwives (CATSINaM). Providing Culturally Safe Palliative Care for Aboriginal and Torres Strait Islander Australians. Position Statement. Sydney: CATSINaM; 2021.

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 ± NSAID; manual therapy

2–6 weeks

Provocable on palpation; no red flags

Thoracic compression fracture

Paracetamol; ± 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 ± morphine; lap cholecystectomy

Surgical within 72 h (cholecystitis)

RUQ/infrascapular; post-prandial; RUQ US

📚 References

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. National Health and Medical Research Council (NHMRC). Evidence-based management of acute musculoskeletal pain. Canberra: NHMRC; 2003 (updated 2020).
3. Australian Institute of Health and Welfare (AIHW). Aboriginal and Torres Strait Islander Health Performance Framework: Summary report 2023. Canberra: AIHW; 2023.
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. 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. 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. Royal Australian College of General Practitioners (RACGP). Guidelines for preventive activities in general practice. 9th edn. Melbourne: RACGP; 2018 (updated 2023).
8. Hirsch JA, Singh V, Falco FJE, et al. Thoracic facet joint interventions. Pain Physician. 2016;19(4):E581–E593.
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. Strayer RJ, Gunnerson JM, Brown LH, et al. Aortic dissection: clinical features, diagnosis, and management. Aust Crit Care. 2019;32(2):144–153.
11. Ombregt L. A system of orthopaedic medicine. 3rd edn. Edinburgh: Churchill Livingstone Elsevier; 2013. Chapter 18: Thoracic spine.
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.

📚 References

1. Australian Institute of Health and Welfare (AIHW). Autoimmune disease in Australia. Cat. no. PHE 312. Canberra: AIHW; 2023.
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. 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. 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. Smolen JS, Landewé 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. Australian Technical Advisory Group on Immunisation (ATAGI). Australian Immunisation Handbook. Australian Government Department of Health; 2024. Available from: immunisationhandbook.health.gov.au.
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. Pharmaceutical Benefits Scheme (PBS). PBS Schedule. Australian Government Department of Health. Available from: pbs.gov.au. Accessed 2024.
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. Pisetsky DS. Antinuclear antibody testing — misunderstood or misused? Clin Immunol. 2023;255:109717.
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. Ledingham J, Deighton C; British Society for Rheumatology Standards, Audit and Guidelines Working Group. Update on the British Society for Rheumatology guidelines for prescribing TNFα blockers in adults with rheumatoid arthritis. Rheumatology. 2005;44(2):155–158.
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

Medication adherence

Specific conditions

Referral pathways

📚 References

1. Australian Institute of Health and Welfare (AIHW). Autoimmune disease in Australia. Cat. no. PHE 312. Canberra: AIHW; 2023.
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. 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. 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. Smolen JS, Landewé 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. Australian Technical Advisory Group on Immunisation (ATAGI). Australian Immunisation Handbook. Australian Government Department of Health; 2024. Available from: immunisationhandbook.health.gov.au.
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.
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