Agitation and Restlessness in the Last Days

Last updated 1 Jun 2026 · Palliative care

📋 Key Information Summary

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Terminal agitation (terminal restlessness) affects 25–85% of patients in the last days of life and is distressing for patients, families, and clinicians.
Always assess and attempt to reverse potentially treatable causes before escalating sedation — urinary retention, constipation, uncontrolled pain, medication toxicity (anticholinergics, opioids), and hypoxia are common reversible contributors.
Haloperidol 0.5–2.5 mg SC/PO is the first-line antipsychotic for agitated delirium in the last days; titrate in small increments every 1–2 hours as needed.
Midazolam 2.5–5 mg SC bolus (or 0.5–1 mg IV) followed by 10–30 mg/24 h SC infusion is first-line for anxiety-driven or refractory agitation; clonazepam 0.5–1 mg SC/PO BD is an alternative for ongoing symptom control.
Avoid all antipsychotics in patients with Parkinson's disease or Lewy body dementia — severe extrapyramidal reactions and neuroleptic malignant syndrome may occur; use low-dose benzodiazepines or quetiapine only under specialist advice.
If haloperidol causes extrapyramidal effects, consider switching to midazolam or adding an anticholinergic agent rather than persisting with dose escalation.
The subcutaneous (SC) route is preferred when oral intake is unreliable — midazolam and haloperidol are well absorbed SC; continuous SC infusions via syringe driver are standard in Australian palliative care.
Use a syringe driver (e.g., McKinley T34) at 1 mL/h for continuous subcutaneous infusions when intermittent dosing is insufficient.
Sedation of last resort (palliative sedation therapy) should follow documented informed consent, clinical ethics discussion, and be proportionate to refractory symptoms — it is not euthanasia.
Reassess sedation requirements every 4–6 hours; the goal is comfort, not unconsciousness, unless symptoms are truly refractory.
Ensure regular bowel care and review all current medications — discontinue non-essential medications in the last days of life.
Communicate clearly with family/carers about the dying process and expected symptom management; involve palliative care specialist support early if available.

Introduction & Australian Epidemiology

Terminal agitation — also referred to as terminal restlessness, agitated delirium, or pre-death restlessness — is a distressing neuropsychiatric syndrome that occurs in the final hours to days of life. It manifests as psychomotor hyperactivity, purposeless movements, moaning, grimacing, picking at bedclothes, verbal agitation, and occasionally combativeness. The condition is not a single entity but a clinical phenotype arising from multiple overlapping aetiologies including metabolic encephalopathy, medication effects, uncontrolled pain, and the neurological changes of the dying process itself.

In Australia, approximately 170,000 people die each year, with the majority of deaths occurring in hospital (54%), residential aged care facilities (32%), or at home with community palliative care support (14%). Studies from Australian palliative care services report that agitation or restlessness occurs in 25–85% of patients in the last week of life, with significant variation depending on diagnostic criteria used and the setting of care. The Palliative Care Outcomes Collaboration (PCOC) national dataset consistently identifies delirium and agitation as among the most prevalent symptoms in the final phase of life.

Terminal agitation carries significant clinical importance because it is a major source of distress for families and clinicians alike, and is a leading reason for emergency palliative care consultations. Poorly managed terminal agitation can result in family trauma, moral distress in healthcare workers, and may contribute to requests for euthanasia where legal frameworks exist. Conversely, proportionate and well-communicated symptom management provides comfort to the patient and facilitates a peaceful dying experience.

This article provides a structured approach to the assessment and pharmacological management of agitation and restlessness in the last days of life, with emphasis on Australian practice, PBS-listed medications, the subcutaneous route of administration, and the critical distinction between reversible causes and symptoms requiring sedation.

Underlying Causes

The aetiology of terminal agitation is almost always multifactorial. A systematic approach to identifying and managing reversible contributors is essential before escalating sedative therapy. The mnemonic DIME-R is a useful clinical aide-mémoire: Drugs, Infection/inflammation, Metabolic, Environmental, Retention (urinary/faecal).

Reversible Causes

Category	Specific Causes	Assessment / Reversal
Drugs	Opioid toxicity (myoclonus, hyperalgesia), anticholinergic burden (hyoscine, promethazine, amitriptyline), corticosteroid-induced psychosis, benzodiazepine withdrawal, serotonergic agents	Review medication chart — stop or reduce suspect agents; consider opioid rotation; reduce anticholinergic load
Pain	Under-treated nociceptive, neuropathic, or visceral pain; bone metastases; pathological fractures; wound pain; mucositis	Observe for grimacing, guarding, tachycardia; titrate analgesia; add adjuvant agents (dexamethasone for raised ICP/bone pain, ketamine for refractory pain if appropriate)
Retention	Urinary retention (anticholinergic medications, prostate disease, spinal cord compression), faecal impaction	Bladder scan (available in most Australian hospitals); insert indwelling catheter if retention >400 mL; perform PR examination if faecal impaction suspected
Metabolic	Hypercalcaemia (common in malignancy), uraemia, hepatic encephalopathy, hyponatraemia, hypoglycaemia, hypoxia, hypercapnia	Biochemistry panel (Ca²⁺, Na⁺, glucose, renal/liver function) if clinically indicated and results would change management; assess oxygen saturation
Infection	Urinary tract infection, aspiration pneumonia, meningitis, sepsis	Treat only if clinically indicated and consistent with goals of care; consider comfort-focused approach in the dying phase
Environmental	Noise, bright lighting, unfamiliar surroundings, excessive stimulation, lack of familiar persons	Reduce environmental stimuli; ensure familiar presence; dim lighting; gentle music; consistent nursing staff where possible
Psychological / Spiritual	Fear, existential distress, unfinished business, anticipatory grief, spiritual distress	Involve social work, pastoral care / Aboriginal and Torres Strait Islander health workers; facilitate family presence and meaningful conversations

⚠️

Clinical pearl: In the last days of life, investigations should only be performed if the results would meaningfully change management within the patient's goals of care. Full blood counts and imaging are rarely indicated. A focused clinical assessment — observation, targeted examination, and medication review — is usually sufficient to identify reversible contributors.

Irreversible Causes

When reversible causes have been addressed or the patient is in the active dying phase with irreversible encephalopathy, symptom management with antipsychotics and/or benzodiazepines is appropriate. Common irreversible contributors include:

Multi-organ failure / metabolic encephalopathy of the dying process
Cerebral oedema from advanced malignancy
Widespread leptomeningeal disease
Advanced neurodegenerative disease (motor neurone disease, frontotemporal dementia)
Cortical ischaemic changes in the final hours

Haloperidol

Haloperidol is a butyrophenone antipsychotic and the first-line agent for agitated delirium in Australian palliative care. It has a well-established evidence base, multiple routes of administration, rapid onset when given subcutaneously, and minimal respiratory depressant effects — a critical advantage over benzodiazepines in patients with compromised respiratory function. It is listed on the PBS and available in all Australian hospital and community palliative care settings.

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Haloperidol

Haldol® · Serenace® · Antipsychotic (butyrophenone)

Adult dose — mild agitation 0.5–1.5 mg PO/SC/IV every 2–4 hours as needed (PRN)

Adult dose — moderate–severe agitation 2.5–5 mg SC/IM stat, then 2.5–5 mg SC every 4–6 hours PRN; or 5–15 mg/24 h SC via syringe driver (continuous)

Paediatric dose 0.01–0.05 mg/kg SC/PO every 4–6 hours (paediatric palliative care specialist guidance)

Onset of action SC: 15–30 min · PO: 30–60 min · IM: 20–40 min

Duration 4–12 hours (dose-dependent)

Renal adjustment No specific adjustment required; use clinical caution in severe renal impairment (eGFR <15)

Hepatic adjustment Reduce dose by 50% in severe hepatic impairment (Child-Pugh C); haloperidol is extensively hepatically metabolised

PBS status ✔ PBS General Benefit

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Do NOT use haloperidol in patients with Parkinson's disease, Lewy body dementia, or other Parkinson-plus syndromes. Haloperidol can precipitate severe rigidity, neuroleptic malignant syndrome, and death. See Parkinson-Plus Cautions section below.

Clinical Pearls for Haloperidol Use

Haloperidol has minimal sedative and respiratory depressant effects at antipsychotic doses — making it safer than benzodiazepines in patients with respiratory compromise.
Extrapyramidal side effects (EPSE) — acute dystonia, akathisia, oculogyric crisis — can occur, especially in younger patients. Administer IV slowly (≤5 mg/min) to reduce risk of QTc prolongation and dystonic reactions.
QTc prolongation is a known risk — haloperidol should be used with caution in patients with known QTc prolongation, concurrent QTc-prolonging drugs (ondansetron, erythromycin, amiodarone), or electrolyte disturbances (hypokalaemia, hypomagnesaemia).
For patients who experience EPSE, switch to midazolam or add an anticholinergic (benzatropine 1–2 mg IV/IM/PO) rather than continuing haloperidol.
In the syringe driver, haloperidol is compatible with midazolam and morphine in a combined subcutaneous infusion (consult palliative care pharmacy compatibility charts).
If haloperidol at adequate doses provides insufficient sedation after 2–3 dose increments, add or switch to midazolam — do not continue to escalate haloperidol indefinitely.

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Typical syringe driver combination for terminal agitation: Midazolam 10–30 mg + Haloperidol 5–10 mg ± Morphine equivalent dose in 24 mL Normal Saline at 1 mL/h SC via McKinley T34 or similar. Adjust based on breakthrough PRN requirements.

Midazolam & Clonazepam

Benzodiazepines are the second-line agents for terminal agitation when haloperidol alone is insufficient, or first-line when agitation is driven predominantly by anxiety, existential distress, or when antipsychotics are contraindicated (e.g., Parkinson's disease). Midazolam is the most commonly used benzodiazepine in the Australian palliative care setting due to its rapid onset, short duration, and suitability for continuous subcutaneous infusion. Clonazepam is a longer-acting alternative useful for ongoing management.

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Midazolam

Hypnovel® · Midazolam Alphapharm® · Benzodiazepine

Adult dose — PRN bolus 2.5–5 mg SC or 0.5–2 mg IV, repeat every 1–2 hours as needed

Adult dose — continuous infusion 10–30 mg/24 h SC via syringe driver; titrate upward in increments of 5–10 mg/24 h every 12–24 hours as needed

Refractory agitation (escalation) Up to 60–100 mg/24 h SC continuous infusion under specialist palliative care guidance

Paediatric dose 0.05–0.1 mg/kg SC/IV PRN; 0.2–0.5 mg/kg/24 h SC continuous (specialist guidance)

Onset of action SC: 5–15 min · IV: 1–3 min · PO: 15–30 min

Duration 2–6 hours (bolus); continuous infusion provides steady-state

Renal adjustment Active metabolites accumulate in renal impairment — use lower doses and titrate cautiously; monitor for excessive sedation

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

PBS status ✔ PBS General Benefit

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Clonazepam

Rivotril® · Paxam® · Benzodiazepine

Adult dose — sublingual / oral 0.5–1 mg SL/PO BD; titrate to 0.5–2 mg BD as needed

Adult dose — subcutaneous 0.5–2 mg/24 h SC via syringe driver; can be combined with other agents

Paediatric dose 0.01–0.05 mg/kg PO/SC BD (specialist guidance)

Onset of action PO/SL: 30–60 min · SC: 15–30 min

Duration 6–12 hours (long-acting)

Renal adjustment No specific adjustment; use clinical caution

Hepatic adjustment Reduce dose in hepatic impairment; monitor sedation

PBS status ⚑ PBS Authority Required

When to Choose Benzodiazepines

Anxiety-dominant agitation

When the primary driver is psychological distress, fear, or anxiety rather than delirium with misperceptions.

Antipsychotic contraindicated

Parkinson's disease, Lewy body dementia, neuroleptic hypersensitivity, severe EPSE history.

Haloperidol insufficient

When haloperidol at therapeutic doses has failed to control agitation — add midazolam before escalating haloperidol further.

Myoclonus or seizure activity

Benzodiazepines are effective for opioid-induced myoclonus and seizure-like activity in the dying phase.

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Respiratory depression risk: Midazolam can cause respiratory depression, particularly at higher doses and in patients with pre-existing respiratory compromise (e.g., COPD, obstructive sleep apnoea, pulmonary fibrosis). In patients with significant respiratory disease, titrate carefully and prefer haloperidol as first-line. In the last days of life, the goal is comfort — proportionate sedation to achieve comfort is ethically appropriate even if respiratory rate decreases.

Comparison: Haloperidol vs Midazolam

Feature	Haloperidol	Midazolam
Primary indication	Agitated delirium (hallucinations, confusion)	Anxiety, restlessness, refractory agitation, myoclonus
Respiratory depression	Minimal at antipsychotic doses	Dose-dependent risk — significant at higher doses
Sedation	Mild — patients often remain rousable	Significant — deeper sedation at higher doses
EPSE risk	Yes — dystonia, akathisia (especially younger patients)	None
QTc prolongation	Yes — monitor in at-risk patients	No
SC compatibility	Well tolerated SC	Well tolerated SC; compatible with haloperidol in syringe driver
Parkinson's safe	No — contraindicated	Yes — first-line in Parkinson's

Parkinson-Plus Cautions

Patients with Parkinson's disease (PD), dementia with Lewy bodies (DLB), and other Parkinson-plus syndromes (progressive supranuclear palsy, multiple system atrophy, corticobasal degeneration) represent a high-risk population for antipsychotic-related adverse events. Dopamine D₂ receptor blockade by antipsychotics can precipitate catastrophic extrapyramidal rigidity, neuroleptic malignant syndrome (NMS), and death. This is particularly dangerous in DLB where antipsychotic sensitivity syndrome occurs in up to 50% of patients.

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NEVER use haloperidol, droperidol, risperidone, or olanzapine in patients with Parkinson's disease or Lewy body dementia. Even low doses can cause life-threatening rigidity and NMS. This includes inadvertent use via PRN orders for agitation.

Safe Alternatives for Agitation in Parkinson's / Lewy Body

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Quetiapine

Seroquel® · Atypical antipsychotic

Adult dose 12.5–25 mg PO/NG nocte; titrate to 25–50 mg BD as needed. Higher doses only under specialist supervision.

Advantages Lowest EPSE risk of all antipsychotics; least likely to worsen parkinsonian symptoms; available as oral dispersible tablet (ODT) for sublingual use

Limitations Not available as injectable; cannot use in syringe driver; onset 30–60 min PO; QTc prolongation risk

PBS status ⚑ PBS Authority Required

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Midazolam

Hypnovel® · Benzodiazepine (first-line in PD/DLB)

Adult dose 2.5 mg SC bolus PRN; 10–30 mg/24 h SC continuous as needed

Advantages No EPSE risk; rapid onset SC; compatible with syringe driver; provides both anxiolysis and sedation

PBS status ✔ PBS General Benefit

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Clonazepam

Rivotril® · Benzodiazepine

Adult dose 0.25–0.5 mg SL/PO BD; titrate to effect

Advantages Long-acting; good for ongoing management; SL formulation useful when swallowing impaired

PBS status ⚑ PBS Authority Required

Managing Existing Dopaminergic Medications

In patients with PD/DLB who are agitated, there is a tension between:

Continuing levodopa/carbidopa — abrupt withdrawal can worsen rigidity, akinesia, and dysphagia, and may itself trigger delirium.
Reducing levodopa — may be appropriate if dyskinesias or hallucinations are contributing to distress, but should be done gradually (reduce by 25% increments) if time permits.

ℹ️

Practical approach in the last days of life: If the patient can still swallow, continue existing levodopa at the same or reduced dose. If the patient cannot swallow, levodopa is not reliably absorbed via SC route — expect worsening rigidity and manage with benzodiazepines for comfort. Discuss goals of care with the patient (if able) and family.

Anticholinergic Burden in Parkinson's

Patients with PD may be on anticholinergic medications (benztropine, trihexyphenidyl) which can contribute to confusion and agitation. Review all anticholinergic medications and discontinue non-essential agents. Common medications with anticholinergic properties to review include oxybutynin, hyoscine, promethazine, tricyclic antidepressants, and antihistamines.

Severity Assessment & Pharmacological Escalation

Terminal agitation should be assessed and managed in a stepwise manner, escalating pharmacotherapy only when simpler measures are inadequate. The following framework guides escalation from first-line to palliative sedation of last resort.

Mild

Restlessness & Anxiety

Occasional agitation, restlessness, verbalising distress, picking at sheets; patient can be reassured; sleeps in short periods.

Setting: Home / hospice / ward

Moderate

Agitated Delirium

Persistent psychomotor agitation, disorientation, hallucinations (visual/tactile), inconsolable distress, sleep–wake cycle disrupted; unresponsive to non-pharmacological measures.

Setting: Inpatient palliative care / hospice

Severe

Refractory Agitation / Palliative Sedation

Combative, climbing out of bed, at risk of self-harm; or continuous overwhelming distress despite optimal pharmacotherapy; requires deep sedation for comfort.

Setting: Inpatient with 1:1 nursing or specialist palliative care

Pharmacological Escalation Ladder

Non-pharmacological measures + treat reversible causes

Environmental modification, family presence, discontinue offending medications, treat pain, relieve retention. Review anticholinergic burden. Ensure regular bowel care.

Haloperidol alone (delirium-dominant)

Haloperidol 0.5–2.5 mg SC/PO PRN every 1–4 hours; or haloperidol 5–15 mg/24 h SC via syringe driver. Add PRN boluses for breakthrough.

Add midazolam (anxiety or inadequate haloperidol response)

Midazolam 2.5–5 mg SC PRN + haloperidol ongoing. If effective, consolidate into syringe driver: haloperidol 5–10 mg + midazolam 10–30 mg/24 h SC.

Escalate midazolam infusion (refractory symptoms)

Increase midazolam to 30–60 mg/24 h SC; add PRN boluses. Consider adding clonazepam 1–2 mg/24 h SC. Ensure goals-of-care discussion documented.

Palliative sedation of last resort

Continuous midazolam 60–100+ mg/24 h SC or propofol infusion (ICU setting only). Requires: documented informed consent, ethics team consultation, second specialist opinion, clear documentation that symptoms are refractory. Proportionate sedation — not euthanasia.

Monitoring

Monitoring in the last days of life should be proportionate, focused on comfort, and minimally intrusive. Routine vital sign monitoring is not appropriate — clinical observation by experienced nursing staff is the standard of care.

Parameter	Method	Frequency
Agitation severity	Clinical observation; Richmond Agitation-Sedation Scale (RASS) if clinically useful	Every 1–2 hours during titration; every 4–6 hours once stable
Sedation level	Patient should be rousable to voice or light touch (comfort sedation); deep unresponsive sedation = reassess goals	Every 2–4 hours
Respiratory status	Respiratory rate, pattern, presence of noisy breathing (death rattle); no pulse oximetry in actively dying	Continuous nursing observation
PRN medication usage	Document all PRN doses given; if ≥3 PRN boluses in 24 hours, increase the syringe driver rate	Each administration
SC site	Inspect cannula site for swelling, erythema, leakage — rotate every 72 hours or sooner if issues	Every shift (minimum 8-hourly)
Family distress	Communicate openly with family about symptom management; offer bereavement support	Ongoing; formal family meeting at least once
Bowel function	Last bowel action; abdominal distension; ensure regular aperients continued if appropriate	Daily

⚠️

Syringe driver titration rule: If a patient requires ≥3 PRN SC bolus doses in a 24-hour period, increase the continuous syringe driver infusion rate by approximately 50–100% of the total PRN doses used, then re-evaluate in 12–24 hours. Document all dose changes clearly in the medical record.

Special Populations

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Pregnancy

Terminal agitation in pregnancy is exceptionally rare and requires specialist multidisciplinary management (obstetric, neonatal, palliative care).

Haloperidol: Category B3 (ARTG) — limited human data but no clear teratogenicity; use only if clearly needed.

Midazolam: Category C (ARTG) — avoid in first trimester; risk of neonatal respiratory depression if used near delivery.

Clonazepam: Category D (ARTG) — avoid if possible; risk of congenital malformations and neonatal withdrawal syndrome.

Preferred: Non-pharmacological measures first; haloperidol lowest effective dose if required.

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Paediatrics

Paediatric terminal agitation management requires specialist paediatric palliative care input (e.g., Bear Cottage, Very Special Kids, state paediatric palliative care services).

Haloperidol: 0.01–0.05 mg/kg SC/PO every 4–6 hours; maximum 2.5 mg per dose in adolescents.

Midazolam: 0.05–0.1 mg/kg SC PRN; 0.2–0.5 mg/kg/24 h SC continuous infusion.

Clonazepam: 0.01–0.05 mg/kg PO/SC BD.

Weight-based dosing is essential. Neonates and infants have immature hepatic metabolism — start at the lowest end of the dose range.

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Elderly / Frail

Most patients with terminal agitation are elderly. Start at the lowest recommended doses and titrate slowly — "start low, go slow."

Haloperidol: Begin at 0.25–0.5 mg SC/PO; elderly patients are more susceptible to EPSE, QTc prolongation, falls, and anticholinergic effects.

Midazolam: Begin at 1–2.5 mg SC bolus; increased sensitivity to benzodiazepines due to reduced hepatic metabolism and volume of distribution.

Review anticholinergic burden — elderly patients are often on multiple medications with cumulative anticholinergic effects contributing to delirium.

Residential aged care facility staff should be trained in subcutaneous medication administration and syringe driver management. Consider transfer to inpatient palliative care if agitation is not manageable in the facility.

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Renal Impairment

Haloperidol: No significant renal dose adjustment required, but active metabolites may accumulate in severe CKD (eGFR <15). Monitor for excessive sedation and EPSE.

Midazolam: Active metabolite (α-hydroxymidazolam) accumulates in renal impairment — reduce dose by 30–50% and extend dosing intervals. Risk of prolonged sedation and paradoxical agitation.

Clonazepam: No specific dose adjustment; use clinical caution and monitor sedation.

Uraemia itself contributes to encephalopathy and agitation — in the dying phase, treat symptomatically rather than pursuing dialysis unless consistent with goals of care.

Opioid doses may also need adjustment in renal failure (avoid morphine active metabolites — consider fentanyl or hydromorphone).

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Hepatic Impairment

Haloperidol: Extensively hepatically metabolised — reduce dose by 50% in severe hepatic impairment (Child-Pugh C). Monitor for excessive sedation and QTc prolongation.

Midazolam: Reduce dose by 50% in severe hepatic impairment; prolonged half-life and accumulation risk. Paradoxical agitation may occur in hepatic encephalopathy.

Clonazepam: Reduce dose; prolonged elimination in hepatic impairment.

Hepatic encephalopathy may itself cause agitation — consider lactulose and/or rifaximin if consistent with goals of care. Severe coagulopathy may affect SC absorption — consider SC site monitoring.

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Immunocompromised

Immunocompromised patients (HIV/AIDS, post-transplant, chemotherapy-induced neutropenia, high-dose corticosteroids) may have agitation from CNS infections (cryptococcal meningitis, cerebral toxoplasmosis, CMV encephalitis) or medication-related effects.

Corticosteroid-induced psychosis — consider dexamethasone dose reduction if contributing to agitation; short course of haloperidol is effective for steroid psychosis.

Standard antipsychotic and benzodiazepine doses apply; no specific dose adjustments for immunosuppression alone.

Consider whether CNS infection is contributing and whether treatment is consistent with goals of care.

Aboriginal and Torres Strait Islander Health Considerations

Aboriginal and Torres Strait Islander Health

Aboriginal and Torres Strait Islander Australians have a distinct understanding of dying, Country, and the spiritual journey that accompanies end of life. Terminal agitation management must be culturally informed, responsive to community preferences, and delivered in partnership with Aboriginal and Torres Strait Islander health workers and liaison officers. The concept of "dying on Country" — returning to one's ancestral land to die — is of profound spiritual significance for many communities and may influence the setting and goals of care.

Cultural understanding of dying

For many Aboriginal and Torres Strait Islander communities, death is understood as a return to Country and ancestors. Agitation may be interpreted through a spiritual lens — "sorry business" (mourning) practices and the presence of family and community are central to care. Involve Aboriginal and Torres Strait Islander health workers early to guide culturally safe communication and decision-making.

Dying on Country

Many Aboriginal and Torres Strait Islander people express a strong preference to die on Country. Facilitating this requires coordination between hospital, community palliative care, primary care (Aboriginal Community Controlled Health Organisations — ACCHOs), and community. Subcutaneous medications via syringe driver can be managed at home or in community settings with appropriate support. Palliative Care Australia's "Roadmap for Action" identifies dying on Country as a priority.

Remote and very remote access

Aboriginal and Torres Strait Islander people living in remote and very remote areas have limited access to palliative care specialists, syringe drivers, and continuous subcutaneous infusions. Remote Area Health Corps (RAHC) and Royal Flying Doctor Service (RFDS) provide some support. Oral and buccal medications (clonazepam SL, quetiapine ODT) may be more practical than SC infusions where nursing capacity is limited. Telehealth palliative care consultations (Medicare Benefits Schedule item numbers available) can support remote clinicians.

Communication and health literacy

Use plain English; avoid medical jargon. Engage Aboriginal and Torres Strait Islander interpreters where English is a second or third language. Use the "yarning" approach — a culturally embedded communication style that prioritises relationship, storytelling, and shared understanding. "Sorry business" considerations may mean multiple family members and Elders are involved in decision-making — allow time and space for this process.

Sorry business and family presence

Family and community presence at the bedside is a fundamental part of Aboriginal and Torres Strait Islander end-of-life care. Large numbers of visitors should be accommodated where possible. Staff should be sensitive to sorry business protocols, which vary between communities. Some communities have restrictions on speaking the name of the deceased or viewing the body — healthcare teams should be guided by the family and Aboriginal liaison officers.

MBS and PBS access

Aboriginal and Torres Strait Islander Australians can access Closing the Gap PBS co-payment programs to reduce medication costs. Ensure prescriptions are annotated with CTG eligibility. MBS telehealth items support specialist palliative care consultations to remote communities. Aboriginal and Torres Strait Islander health workers can assist with medication administration and monitoring in community settings.

Quick Reference: Medication Summary

Scenario

First-line Drug

Dose (SC)

Duration/Route

Notes

Agitated delirium

Haloperidol

2.5 mg SC stat then 5–15 mg/24 h

Continuous or PRN

Add midazolam if insufficient

Anxiety-dominant

Midazolam

2.5–5 mg SC stat then 10–30 mg/24 h

Continuous or PRN

Add haloperidol if delirium present

PD / Lewy body

Midazolam ± quetiapine

2.5 mg SC PRN + quetiapine 12.5–25 mg PO

As needed

NO haloperidol, risperidone, olanzapine

Combined (syringe driver)

Haloperidol + Midazolam

H 5–10 mg + M 10–30 mg in NS 24 mL

1 mL/h SC continuous

Add PRN boluses for breakthrough

Refractory (last resort)

High-dose midazolam

60–100+ mg/24 h SC

Continuous

Requires ethics review + second opinion

📚 References

1. Agar M, Lawlor P, Quinn S, et al. Efficacy of oral risperidone, haloperidol, or placebo for symptoms of delirium among patients in palliative care: a randomized clinical trial. JAMA Intern Med. 2017;177(1):34–42.
2. Bush SH, Kanji S, Pereira JL, et al. Treating an established episode of delirium in palliative care: expert opinion and review of the current evidence base with recommendations for future development. J Pain Symptom Manage. 2014;48(2):231–248.
3. Royal Australian College of General Practitioners (RACGP). Specific Interests — Palliative Care Network: Care of Patients in the Last Days of Life. Melbourne: RACGP; 2023.
4. Palliative Care Australia. National Palliative Care Standards. 5th ed. Canberra: Palliative Care Australia; 2018.
5. Hospice Palliative Care Nurses Australia (HPCA). Syringe Driver Management Guidelines. 3rd ed. Sydney: HPCA; 2022.
6. Bush SH, Marchington KL, Agar M, et al. Quality of clinical practice guidelines in delirium: a systematic analysis. BMJ Open. 2017;7(3):e013809.
7. Australian Institute of Health and Welfare (AIHW). Palliative Care Services in Australia. Canberra: AIHW; 2023.
8. McInnes E, Brown S, Park S, et al. Use of antipsychotic and benzodiazepine medications for terminal agitation in Australian palliative care inpatients: a multi-site prospective cohort study. Aust Health Rev. 2022;46(5):574–581.
9. National Health and Medical Research Council (NHMRC). Guidelines for a Palliative Approach in Residential Aged Care. Canberra: NHMRC; 2006. Updated supplement 2017.
10. Palliative Care Outcomes Collaboration (PCOC). National Benchmarking Report 2023. Wollongong: University of Wollongong; 2023.
11. Good PD, Ravenscroft PJ, Cavenagh J. Effects of opioids and sedatives on survival in an Australian specialist palliative care inpatient unit. Intern Med J. 2005;35(9):518–524.
12. Australian and New Zealand Society of Palliative Medicine (ANZSPM). Statement on Palliative Sedation Therapy. Sydney: ANZSPM; 2020.
13. McMillan SS, Wheeler AJ, Saghafi F, et al. Aboriginal and Torres Strait Islander access to palliative care in Australia: a systematic review. Aust J Rural Health. 2021;29(4):492–506.
14. Shah S, Blanchard M, Tookman A, et al. Quetiapine for the management of delirium in palliative care: a systematic review. J Pain Symptom Manage. 2020;59(4):881–889.
15. Nursing and Midwifery Board of Australia (NMBA). Registered Nurse Standards for Practice. Melbourne: AHPRA; 2016. (Relevant to syringe driver competency and SC medication administration in palliative care.)

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.
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).