Emotional, Psychological and Behavioural Symptoms

Last updated 1 Jun 2026 · Palliative care

📋 Key Information Summary

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Psychological and behavioural symptoms are near-universal in advanced illness and are a major source of suffering equal to physical pain.
Structured screening using validated tools (Distress Thermometer, PHQ-2/PHQ-9, GAD-7, Edmonton Symptom Assessment System—Revised) should be performed at first palliative care contact and repeated regularly.
Distress is a broad umbrella term encompassing emotional, psychological, social, and spiritual suffering; it requires a multidimensional biopsychosocial-spiritual assessment.
Anxiety and depression in palliative care are under-diagnosed and under-treated; pharmacotherapy with SSRIs (e.g., escitalopram, sertraline) and psychological interventions (dignity therapy, meaning-centred therapy) are first-line.
Demoralisation—a syndrome of hopelessness, meaninglessness, and loss of purpose distinct from major depression—responds best to existential and dignity-based psychotherapies rather than antidepressants alone.
Delirium affects up to 88% of patients in the last days of life; reversible causes must be sought and treated (infection, constipation, medications, metabolic derangement).
Haloperidol 0.5–2 mg SC/PO is first-line for agitated delirium in palliative care; midazolam 2.5–5 mg SC is reserved for refractory or terminal agitation.
Non-pharmacological strategies—orientation cues, family presence, consistent staff, calm environment, music therapy—are essential first-line measures for all behavioural symptoms.
Behavioural symptoms (aggression, wandering, disinhibition, vocalisations) often reflect unmet needs—always assess for pain, constipation, urinary retention, and medication adverse effects before escalation.
Aboriginal and Torres Strait Islander Australians experience higher rates of social and emotional distress at end of life; culturally safe care must incorporate connection to Country, family, community, and Traditional healing practices.
Advance care planning and documentation of psychological care preferences reduce distress for both patients and families in the terminal phase.
Carer psychological burden is substantial; bereavement risk screening and anticipatory grief support should begin early in the palliative care trajectory.

Introduction & Australian Epidemiology

Non-physical suffering is a pervasive and often devastating dimension of life-limiting illness. Emotional, psychological, and behavioural symptoms—collectively referred to as psychosocial and psychiatric symptoms—represent a major source of distress for patients, families, and clinicians alike. These symptoms frequently co-exist with physical symptoms and may be amplified by existential concerns about dying, loss of autonomy, role changes, and fear of burdening loved ones.

In Australia, palliative care is delivered across a spectrum of settings: inpatient specialist palliative care units, hospital consultation-liaison services, community-based services, residential aged care facilities (RACFs), and in the home. The Australian Institute of Health and Welfare (AIHW) reports that approximately 160,000 Australians die each year, with an estimated 60–70% requiring some form of palliative care. The National Palliative Care Strategy 2018 emphasises a person-centred approach that integrates psychological, social, and spiritual care alongside physical symptom management.

Epidemiological data from Australian palliative care services indicate:

Clinically significant psychological distress affects 30–50% of patients referred to specialist palliative care services.
Major depressive disorder occurs in approximately 15–25% of patients with advanced cancer, and in similar proportions in end-stage organ failure.
Anxiety disorders are diagnosed in 10–20% of palliative care patients, with subclinical anxiety symptoms considerably more prevalent.
Delirium is identified in 28–42% of hospitalised palliative care patients on admission and approaches 88% in the terminal phase (last 48 hours of life).
Demoralisation is estimated to affect 13–33% of patients with advanced cancer across Australian studies.

The National Safety and Quality Health Service (NSQHS) Standards, particularly the Comprehensive Care Standard (Standard 5) and the Communicating for Safety Standard (Standard 6), mandate structured assessment and documentation of psychological needs. The Palliative Care Australia (PCA) National Palliative Care Standards (4th edition) further stipulate that all patients receiving palliative care should have access to psychological and social support.

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Key principle: Psychological and behavioural symptoms in palliative care must never be dismissed as "normal" or "expected" reactions to dying. Every symptom warrants assessment, and effective treatments exist across the full trajectory of illness—including the terminal phase.

Distress

Psychological distress in palliative care is a broad, multidimensional construct encompassing emotional, cognitive, social, spiritual, and existential suffering. The National Comprehensive Cancer Network (NCCN) defines distress as "a multif unpleasant emotional experience of a psychological (cognitive, behavioural, emotional), social, and/or spiritual nature that may interfere with the ability to cope effectively with cancer, its physical symptoms, and its treatment." This definition is equally applicable to non-malignant life-limiting conditions.

Dimensions of Distress

Dimension	Examples	Key Assessment Focus
Emotional	Fear, sadness, anger, guilt, shame, loneliness, helplessness	Severity, duration, impact on function
Cognitive	Rumination, catastrophising, confusion, memory impairment	Delirium screen (CAM), cognitive baseline
Social	Isolation, role loss, relationship strain, financial stress, carer burden	Social support networks, carer wellbeing
Spiritual	Loss of meaning, existential despair, religious doubt, fear of afterlife	Spiritual beliefs, need for chaplaincy or pastoral care
Practical	Wills, advance care planning, work, child care, housing	Unresolved practical concerns, social work referral
Physical	Pain, fatigue, breathlessness, nausea (as drivers of distress)	Adequate symptom control

Screening and Assessment Tools

Routine distress screening should be implemented at first contact with palliative care services and at regular intervals thereafter. The following validated tools are recommended for use in Australian practice:

Essential Distress Thermometer (DT) Single-item visual analogue scale (0–10); score ≥4 warrants further assessment. Validated in Australian palliative care populations. Brief and acceptable to patients with significant symptom burden.

Essential Edmonton Symptom Assessment System—Revised (ESAS-r) 10-item symptom scale including depression, anxiety, and wellbeing domains. Widely used across Australian palliative care services. Self-report; completable in <5 minutes.

Available Patient Health Questionnaire-9 (PHQ-9) 9-item depression screen; score ≥10 suggests major depression. Modified PHQ-9 (removing somatic items) may be more specific in palliative populations.

Available Generalised Anxiety Disorder-7 (GAD-7) 7-item anxiety screen; score ≥10 indicates likely generalised anxiety disorder. May overestimate anxiety in palliative care due to somatic overlap.

Available Demoralisation Scale—II (DS-II) 16-item validated tool measuring demoralisation. Developed and validated in Australian palliative care populations by Kissane et al. Distinguishes demoralisation from depression.

Available Confusion Assessment Method (CAM) Gold-standard tool for delirium screening: acute onset, inattention, altered consciousness, disorganised thinking. CAM-ICU variant available for non-verbal patients.

Referral Structured Clinical Interview for DSM-5 (SCID-5) Formal psychiatric diagnostic interview. Reserved for complex cases, diagnostic uncertainty, or medicolegal assessment. Requires psychiatry or clinical psychology referral.

Non-Pharmacological Management of Distress

Therapeutic communication: Active listening, validation, empathic presence, and "holding" the patient emotionally are foundational skills for all members of the palliative care team.
Dignity therapy: Developed by Prof. Harvey Chochinov (with significant Australian contribution); involves a recorded interview exploring legacy, meaning, and life narrative. Evidence supports improvement in existential distress and sense of purpose. Available in many Australian specialist palliative care services.
Meaning-centred psychotherapy (MCP): Based on Viktor Frankl's logotherapy; targets existential distress and demoralisation. Adapted for individual and group formats. Brief meaning-centred therapy (7 sessions) has RCT evidence in advanced cancer.
Cognitive behavioural therapy (CBT): Adapted CBT for palliative care addresses maladaptive thought patterns, catastrophic thinking, and avoidance behaviours. Brief formats (4–6 sessions) are practical and effective.
Mindfulness-based interventions: Acceptance and Commitment Therapy (ACT), mindfulness-based stress reduction (MBSR), and mindfulness-based cognitive therapy (MBCT) show moderate evidence for reducing distress, anxiety, and depression in palliative populations.
Music therapy: Registered music therapists (RMTs) provide evidence-based interventions for distress, anxiety, and pain in palliative care. Recognised by Palliative Care Australia and funded in some state-based services.
Art therapy, creative therapies, and life review: Offered by trained therapists in many Australian palliative care services; facilitate expression of difficult emotions and creation of legacy materials.
Spiritual and pastoral care: Pastoral care practitioners and chaplains (including Aboriginal and Torres Strait Islander spiritual healers) provide existential and spiritual support. The Australian Healthcare and Hospitals Association recognises spiritual care as a core palliative care domain.
Social work intervention: Addressing practical concerns (advance care planning, financial counselling, Centrelink navigation, NDIS/My Aged Care linkages, family mediation) can significantly reduce distress.
Carer and family support: Family meetings, anticipatory grief counselling, and carer-specific interventions (respite, psychoeducation) are integral to managing distress in the family system.

Anxiety & Depression

Anxiety in Palliative Care

Anxiety is among the most common psychological symptoms in advanced illness. It may manifest as a primary anxiety disorder (generalised anxiety disorder, panic disorder, social anxiety disorder, specific phobias including needle/blood/injection phobia), adjustment disorder with anxious features, or as a symptom of another condition (delirium, pain, hypoxia, medication effects, substance withdrawal).

Common precipitants of anxiety in palliative care include:

Fear of death, dying, and the unknown
Fear of pain and suffering
Fear of loss of control, dignity, and independence
Fear of being a burden to family
Separation from loved ones
Unfinished business, unresolved conflicts
Diagnostic uncertainty or disease progression
Procedural anxiety (e.g., radiotherapy, imaging)
Medication-related: corticosteroids, bronchodilators, antiemetics (metoclopramide), serotonergic agents
Substance withdrawal (alcohol, benzodiazepines, opioids)
Medical causes: hypoxia, hypoglycaemia, thyrotoxicosis, phaeochromocytoma, pulmonary embolism

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Always exclude reversible causes of anxiety before attributing it to psychological origin. Hypoxia, uncontrolled pain, medication effects, substance withdrawal, delirium, and metabolic disturbances are common and treatable precipitants in palliative care populations.

Pharmacological Management of Anxiety

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Escitalopram

Lexapro® · Generic · SSRI

Adult dose 5 mg PO OD, titrate to 10–20 mg PO OD after 1–2 weeks

Paediatric dose Not routinely used in paediatric palliative care for anxiety; consider child psychiatry input

Onset 2–4 weeks for full anxiolytic effect; some benefit at 1 week

Duration Ongoing; reassess at 4–6 weeks

Renal adjustment No adjustment required

Hepatic adjustment Max 10 mg OD in severe hepatic impairment (Child-Pugh C)

PBS status ✔ PBS General Benefit

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Sertraline

Zoloft® · Generic · SSRI

Adult dose 25–50 mg PO OD, titrate to 50–200 mg PO OD

Paediatric dose ≥6 years: 25 mg PO OD, titrate cautiously; specialist supervision recommended

Onset 2–4 weeks

Duration Ongoing; reassess at 4–6 weeks

Renal adjustment No adjustment required

Hepatic adjustment Reduce dose or use with caution in hepatic impairment

PBS status ✔ PBS General Benefit

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Lorazepam

Ativan® · Generic · Benzodiazepine

Adult dose 0.5–1 mg PO/SL/SC PRN; max 2–3 mg in 24 hours (divided doses)

Paediatric dose 0.02–0.05 mg/kg PO/SC PRN (max 0.1 mg/kg/day); for procedural anxiety or acute distress

Onset 15–30 minutes (PO/SL); 5–15 minutes (SC)

Duration 4–6 hours per dose; short-term use preferred

Renal adjustment Use with caution; start at lower dose. No active metabolites—preferred benzodiazepine in renal impairment.

Hepatic adjustment Use with caution; prolonged half-life in hepatic impairment. Consider lorazepam as glucuronidation is not CYP-dependent.

PBS status ✔ PBS General Benefit

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Midazolam

Hypnovel® · Generic · Benzodiazepine

Adult dose 2.5–5 mg SC/IV PRN for acute severe anxiety; continuous SC infusion 10–30 mg/24h for refractory anxiety

Paediatric dose 0.05–0.1 mg/kg SC/IV PRN for acute procedural or terminal distress

Onset 2–5 minutes (SC/IV); 15 minutes (intranasal)

Duration 2–4 hours per bolus

Renal adjustment Use with caution; reduced clearance

Hepatic adjustment Significantly prolonged half-life; reduce dose and monitor closely

PBS status ✔ PBS General Benefit (injection); Authority Required for some indications

Depression in Palliative Care

Depression in palliative care is common but frequently under-diagnosed. Diagnostic overshadowing—the attribution of depressive symptoms to the understandable response to terminal illness—leads to systematic under-treatment. While sadness and grief are normal responses, major depressive disorder represents a distinct clinical syndrome that causes additional suffering and functional impairment and responds to treatment.

Differentiating normal sadness/grief from clinical depression:

Feature	Normal Sadness / Grief	Major Depression
Quality of mood	Waves, mixed with positive memories	Persistent, pervasive, unremitting
Self-esteem	Preserved	Markedly diminished; worthlessness, guilt
Pleasure capacity	Intact; can still enjoy moments	Anhedonia; unable to derive pleasure
Suicidal ideation	Rare; may wish for "not waking up"	Active ideation, plans, or intent—requires urgent safety assessment
Duration	Fluctuates; gradually eases	≥2 weeks of persistent symptoms
Function	Relatively preserved	Significantly impaired
Hopelessness	Intermittent; can engage with hope	Pervasive hopelessness (strongest predictor of suicidality)

Pharmacological Management of Depression

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Mirtazapine

Avanza® · Remeron® · NaSSA

Adult dose 15 mg PO ON (at night); titrate to 30–45 mg PO ON

Paediatric dose Not routinely recommended <18 years for this indication; specialist advice

Advantages in palliative care Sedating (aids insomnia), appetite-stimulating (combats cachexia), antiemetic, low GI side-effect profile. Rapid onset of sleep improvement (within days).

Onset 1–2 weeks for mood effect; sleep/appetite improvement within days

Renal adjustment Clearance reduced ~30%; monitor for excessive sedation

Hepatic adjustment Clearance reduced ~30%; use lower doses and titrate slowly

PBS status ✔ PBS General Benefit

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Dexamethasone

Dexamethasone · Generic · Corticosteroid

Adult dose 4–8 mg PO/IV OD (morning); taper to lowest effective dose

Role in palliative care Short-term mood elevation, appetite stimulation, antiemetic, reduces cerebral oedema. Not a primary antidepressant; useful as adjunct for rapid effect or when life expectancy is limited (days–weeks).

Onset Rapid (hours–days)

Duration Short-term; taper when possible

Renal adjustment No adjustment required

Hepatic adjustment No specific adjustment; monitor for adverse effects

PBS status ✔ PBS General Benefit

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Practical prescribing note: In patients with a life expectancy of weeks, SSRIs/SNRIs may not have time to reach therapeutic effect. Consider mirtazapine (faster onset, added benefits of sedation and appetite stimulation), short-term benzodiazepines for acute distress, or dexamethasone for rapid mood effect. For patients with months or longer, SSRIs remain first-line. Always combine pharmacotherapy with psychological interventions.

Demoralisation

Demoralisation is a distinct psychiatric syndrome increasingly recognised in palliative care. First described by Jerome Frank in 1973 and further developed by Australian psychiatrist Prof. David Kissane, demoralisation is characterised by a pervasive sense of helplessness, hopelessness, loss of meaning, and subjective incompetence. It is conceptualised as an existential crisis rather than a mood disorder and requires a fundamentally different therapeutic approach from major depression.

Diagnostic Criteria for Demoralisation

The Diagnostic Criteria for Psychosomatic Research (DCPR) define demoralisation as:

Presence of at least one of: subjective incompetence, diffuse hopelessness, or lack of purpose/meaning
The condition is prolonged (≥1 month) and perceived as unacceptable
There is no evidence of a major depressive episode (though comorbidity is possible)
The condition is not better accounted for by another psychiatric disorder

Demoralisation vs Depression: Key Distinctions

Feature	Demoralisation	Major Depression
Core experience	Loss of meaning, purposelessness, subjective incompetence	Pervasive sadness, anhedonia, neurovegetative changes
Self-esteem	Preserved (patient recognises inability but doesn't feel worthless)	Diminished; worthlessness, excessive guilt
Pleasure capacity	Intact (can enjoy moments but unable to find meaning)	Anhedonia
Mood reactivity	Reactive to positive events but effect does not persist	Non-reactive or minimally reactive
Suicidal ideation	Passive (wish to die to end suffering); rarely progresses to active	May be active with intent and planning
Neurovegetative symptoms	Typically absent or attributable to medical condition	Prominent (appetite, sleep, energy, psychomotor changes)
Antidepressant response	Poor	Good (when correctly indicated)
Best treatment approach	Existential/dignity therapy, meaning-centred psychotherapy	Pharmacotherapy + psychotherapy

Assessment of Demoralisation

The Demoralisation Scale—II (DS-II) is a 16-item self-report instrument developed and validated by Kissane et al. in Australian palliative care populations. A score ≥20 (out of 48) indicates clinically significant demoralisation. The DS-II has two subscales: "loss of meaning" and "dysphoria." It is freely available for clinical use.

Management of Demoralisation

Acknowledge and Validate

Name the experience. Communicate that demoralisation is a recognised and understandable response. Reduce isolation through empathic therapeutic presence.

Restore Meaning and Purpose

Dignity therapy, life review, narrative therapy, legacy work, and meaning-centred psychotherapy are the evidence-based interventions of choice. Referral to clinical psychology or palliative care psychotherapy service.

Mobilise Social Support

Facilitate reconnection with family, community, cultural groups, faith communities, and peer support. Social isolation is a powerful driver of demoralisation.

Address Comorbid Conditions

Treat concurrent depression, anxiety, pain, and delirium. Demoralisation often co-exists with these conditions and improvement in any domain may ameliorate demoralisation.

Pharmacotherapy (Adjunctive)

Antidepressants alone are generally ineffective for demoralisation. However, if comorbid depression is present, treat with SSRIs or mirtazapine. Consider short-term benzodiazepines for acute distress while psychosocial interventions are implemented.

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Australian contribution: Prof. David Kissane's work on demoralisation, conducted largely at the University of Melbourne and Monash University, has shaped international understanding of this syndrome. The DS-II and the Family Focused Grief Therapy model are Australian-developed tools that are freely available for clinical and research use.

Behavioural Symptoms

Behavioural symptoms in palliative care encompass a range of observable behaviours that are distressing to the patient, family, or care team. These include agitation, aggression, restlessness, wandering, disinhibition, vocalisations (calling out, screaming), resistance to care, and socially inappropriate behaviour. These symptoms most commonly arise in the context of delirium but may also reflect dementia, psychiatric illness, medication effects, unmet needs, or personality traits amplified by illness.

Delirium in Palliative Care

Delirium is the most common and most clinically significant cause of behavioural disturbance in palliative care. It is a neuropsychiatric syndrome characterised by acute onset, fluctuating course, inattention, and altered level of consciousness. It affects up to 42% of patients on admission to palliative care units and up to 88% in the terminal phase.

Subtypes of Delirium

Hypoactive

Quiet / Subdued

Lethargy, reduced psychomotor activity, withdrawal, flat affect. Most common subtype in palliative care (~40–60%). Often missed and misdiagnosed as depression or fatigue. Carries worse prognosis than hyperactive subtype.

Setting: Ward, RACF, home — often unrecognised

Hyperactive

Agitated / Restless

Agitation, restlessness, picking at bedclothes, combativeness, shouting, hallucinations, delusions, wandering. Most distressing to families and staff. Most commonly leads to pharmacological intervention.

Setting: ED, ward — usually recognised promptly

Mixed

Fluctuating

Alternates between hypoactive and hyperactive states within hours. Most common overall pattern. Requires ongoing monitoring and flexible management.

Setting: All settings — most common pattern overall

Reversible Causes of Delirium — The "DELIRIUM" Mnemonic

Letter	Cause	Examples in Palliative Care
D	Drugs	Opioids (especially at initiation or dose escalation), anticholinergics, benzodiazepines, corticosteroids, antiemetics, antibiotics, polypharmacy
E	Electrolytes / Environment	Dehydration, hypercalcaemia, hyponatraemia, hypoglycaemia, hepatic encephalopathy; unfamiliar environment, sensory deprivation
L	Low oxygen	Hypoxia (pulmonary embolism, pneumonia, COPD exacerbation, heart failure)
I	Infection	UTI, pneumonia, cellulitis, sepsis (most common reversible cause in elderly palliative care patients)
R	Retention	Urinary retention, constipation/faecal impaction (frequently overlooked)
I	Intracranial	Brain metastases, leptomeningeal disease, stroke, subdural haematoma
U	Uncontrolled pain	Undertreated pain is a leading cause of delirium; paradoxically, dose escalation of opioids may also precipitate delirium
M	Metabolic / Withdrawal	Hepatic/renal failure, adrenal insufficiency; alcohol/benzodiazepine/opioid withdrawal

Non-Pharmacological Management of Behavioural Symptoms

Non-pharmacological strategies are first-line for all behavioural symptoms and should be implemented before or concurrently with pharmacotherapy:

Environmental modifications: Adequate lighting (dim night lights), minimise unnecessary noise, maintain day-night cycle, reduce room transfers, use familiar objects/photos from home, ensure clock and calendar visibility.
Communication: Orient patient frequently (name, date, place), use calm and reassuring tone, avoid arguing with delusional content, use simple short sentences, ensure hearing aids and glasses are in use.
Family presence: Familiar faces are the most effective non-pharmacological intervention for agitation. Encourage family presence and participation in care. Provide education and reassurance to family members about delirium.
Consistent staff: Minimise the number of different carers. Continuity of nursing and medical staff reduces confusion and agitation.
Activity and mobility: Where possible, encourage gentle mobilisation, sitting out of bed, and engagement in meaningful activities. Avoid physical restraints, which worsen agitation and increase injury risk.
Music therapy: Familiar music from the patient's personal history can be remarkably calming. Registered music therapists can provide structured interventions.
Aromatherapy: Lavender has limited evidence for anxiolysis; some Australian palliative care services incorporate aromatherapy as an adjunctive measure.
Complementary therapies: Gentle massage, therapeutic touch, and guided relaxation may benefit some patients.

Pharmacological Management of Delirium and Agitation

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Haloperidol

Haldol® · Serenace® · Typical antipsychotic

Adult dose — oral 0.5–2 mg PO/NG OD–BD; titrate in 0.5–1 mg increments; max 5–10 mg/day in divided doses

Adult dose — parenteral 0.5–2 mg SC/IM/IV OD–BD; max 5–10 mg/day; for acute agitation 2–5 mg IM/IV stat

Paediatric dose 0.01–0.05 mg/kg PO/SC OD–BD (max 0.1 mg/kg/day); monitor closely for extrapyramidal effects

Onset 15–30 min (IM/IV); 30–60 min (PO/NG)

Duration 4–8 hours; reassess need regularly

Key cautions QTc prolongation (ECG if feasible); extrapyramidal effects; lower doses in elderly and hepatic impairment; avoid in Lewy body dementia (severe sensitivity reaction)

Renal adjustment No specific dose adjustment; use lower starting dose in elderly

Hepatic adjustment Reduce dose; extensive hepatic metabolism

PBS status ✔ PBS General Benefit

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Olanzapine

Zyprexa® · Generic · Atypical antipsychotic

Adult dose 2.5–5 mg PO OD (at night); titrate to 5–10 mg PO OD; max 20 mg/day

Paediatric dose Not routinely recommended in paediatric palliative care; specialist guidance required

Advantages Oral wafer formulation (Zyprexa Zydis®) useful for patients unable to swallow; sedating; antiemetic; lower extrapyramidal risk than haloperidol

Duration Reassess every 48–72 hours; aim for lowest effective dose; deprescribe as delirium resolves

Key cautions Metabolic effects (less relevant in palliative care); sedation; falls risk in elderly; not available as SC injection

Renal adjustment No specific adjustment required

Hepatic adjustment Start at lower dose; reduce dose in hepatic impairment

PBS status Authority Required

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Risperidone

Risperdal® · Generic · Atypical antipsychotic

Adult dose 0.25–0.5 mg PO BD; titrate to 0.5–2 mg PO BD; max 4 mg/day

Paediatric dose 0.01–0.02 mg/kg PO OD–BD (in specialist behavioural contexts)

Duration Reassess every 48–72 hours

Key cautions QTc prolongation; postural hypotension; extrapyramidal effects at higher doses; hyperprolactinaemia

Renal adjustment Start at lower dose (0.25 mg OD–BD); titrate slowly in renal impairment

Hepatic adjustment Reduce dose; active metabolite accumulation in hepatic impairment

PBS status Authority Required

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Midazolam

Hypnovel® · Generic · Benzodiazepine

Adult dose — refractory agitation 2.5–5 mg SC stat; continuous SC infusion 10–60 mg/24h for terminal agitation unresponsive to antipsychotics

Paediatric dose 0.05–0.1 mg/kg SC PRN; continuous infusion 0.03–0.1 mg/kg/h for terminal distress

Indication Reserved for refractory delirium/agitation unresponsive to antipsychotics, or for terminal agitation when comfort is the sole goal. Often combined with an antipsychotic in last days of life (synergistic sedation).

Onset 2–5 min (SC bolus); 15–30 min (continuous infusion onset)

Key cautions Respiratory depression (significant in non-terminal patients); paradoxical agitation in some elderly patients; tolerance with prolonged infusions

Renal adjustment Use with caution; reduced clearance

Hepatic adjustment Significantly prolonged half-life; reduce dose and monitor

PBS status ✔ PBS General Benefit (injection)

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Clonazepam

Rivotril® · Generic · Benzodiazepine

Adult dose 0.25–0.5 mg PO/SL OD–BD; titrate to 1–2 mg OD–BD

Paediatric dose 0.01–0.03 mg/kg PO OD–BD; for myoclonus or terminal agitation

Indication Myoclonus, anxiety with agitation, terminal restlessness. Sublingual formulation available for patients unable to swallow.

Onset 15–30 min (SL); 30–60 min (PO)

Duration 6–12 hours; long-acting; accumulates with repeated dosing

Renal adjustment No specific adjustment; monitor for excessive sedation

Hepatic adjustment Reduce dose; CYP-dependent metabolism

PBS status ✔ PBS General Benefit

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Levomepromazine

Nozinan® · Typical antipsychotic (low-potency)

Adult dose 6.25–25 mg PO/SC OD–BD; titrate to 25–50 mg/day in divided doses

Role in palliative care Second-line antipsychotic for delirium/agitation when haloperidol is ineffective or not tolerated. Sedating, antiemetic, anxiolytic, and analgesic properties. Particularly useful in terminal agitation. Available as SC formulation.

Onset 30–60 min (PO/SC)

Key cautions Significant hypotension (α-adrenergic blockade); profound sedation; postural hypotension—ensure patient is recumbent; use with extreme caution in cardiovascular disease

Renal adjustment No specific adjustment; use lower doses

Hepatic adjustment Reduce dose; extensive hepatic metabolism

PBS status Authority Required

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Critical safety alert: Benzodiazepines should NOT be used as first-line monotherapy for delirium in palliative care. They may cause paradoxical agitation, worsen delirium, and increase falls risk. Antipsychotics (haloperidol, olanzapine, risperidone) are first-line pharmacotherapy for delirium. Reserve benzodiazepines for delirium associated with alcohol/benzodiazepine withdrawal, seizures, or as adjunctive therapy in terminal agitation.

Terminal Agitation

Terminal agitation (also called "terminal restlessness") refers to agitation occurring in the last days of life (typically 24–72 hours before death). It is characterised by restlessness, moaning, grimacing, and purposeless movements. Management follows a structured approach:

Step 1 — Address reversible causes: Rapidly assess and treat urinary retention, faecal impaction, pain, and drug toxicity (e.g., opioid neurotoxicity—reduce dose and consider opioid rotation or naloxone infusion).
Step 2 — Antipsychotic: Haloperidol 2–5 mg SC stat followed by 2–5 mg SC BD–QID; or olanzapine 5–10 mg wafer; or levomepromazine 6.25–12.5 mg SC.
Step 3 — Add benzodiazepine if refractory: Midazolam 2.5–5 mg SC stat; commence continuous SC infusion at 10–30 mg/24h (titrate to 60 mg/24h if needed). Alternatively, clonazepam 0.5–1 mg SC.
Step 4 — Palliative sedation: If refractory to all measures and the patient is in the last days of life, continuous deep sedation (palliative sedation therapy) may be considered following multidisciplinary discussion, documentation, and family consultation. This should be consistent with the Palliative Care Australia position statement on palliative sedation.

Special Populations

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Pregnancy & Perinatal Palliative Care

Pregnancy and maternal terminal illness Perinatal palliative care for life-limiting fetal diagnoses involves profound psychological distress for parents. Structured psychosocial support from a multidisciplinary team (obstetrics, neonatology, social work, psychology, pastoral care) is essential. In Australia, termination of pregnancy for serious fetal anomaly may be available depending on jurisdiction and gestation. Grief and bereavement support must begin at the time of diagnosis.

Pharmacological considerations SSRIs: sertraline is preferred in pregnancy (most safety data). Avoid paroxetine (cardiac malformations). Benzodiazepines: avoid where possible, especially in first trimester (cleft palate risk) and near term (neonatal floppy infant syndrome). Haloperidol: limited human data; use only when benefits outweigh risks. Mirtazapine: limited data; use cautiously.

Bereavement Perinatal loss requires specialised bereavement support. SANDS Australia (Stillbirth and Neonatal Death Support) provides peer support. PANDA (Perinatal Anxiety and Depression Australia) offers helpline services. Referral pathways should be established early.

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Paediatrics

Children with life-limiting conditions Children experience distress, anxiety, and behavioural symptoms differently depending on developmental stage. Preschool children may exhibit regression, clinginess, and nightmares. School-age children may express fears of separation and bodily harm. Adolescents may show anger, withdrawal, risk-taking, and existential questioning. Assessment tools: Distress Thermometer (adapted), PedsQL, Faces Pain Scale.

Pharmacology Haloperidol 0.01–0.05 mg/kg PO/SC OD–BD for delirium/agitation. Lorazepam 0.02–0.05 mg/kg PO/SC PRN for acute anxiety/distress. Midazolam 0.05–0.1 mg/kg SC PRN for terminal distress. Doses must be weight-calculated and titrated carefully. Involve paediatric palliative medicine specialists.

Family-centred care Parental psychological distress is near-universal and often exceeds the child's distress. Sibling support is frequently overlooked. Referral to paediatric psychology, sibling support programmes (e.g., Starlight Children's Foundation, Camp Quality), and family therapy should be offered proactively.

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Elderly

Delirium risk Elderly patients are at highest risk of delirium due to cognitive reserve depletion, polypharmacy, multimorbidity, sensory impairment, and frailty. Hypoactive delirium is most common and most frequently missed. Routine cognitive screening (e.g., AMT-4, AMT-10) should be performed at admission to all palliative care services and RACFs.

Pharmacology — start low, go slow Haloperidol: start 0.25–0.5 mg PO OD–BD. Avoid benzodiazepines as first-line (falls, paradoxical agitation, worsened delirium). Olanzapine wafer useful when swallowing is impaired. Metoclopramide and other dopamine antagonists may worsen behavioural symptoms in patients with Lewy body dementia. Prescribing according to Beers Criteria is recommended.

Residential aged care RACFs house a significant proportion of Australians who die each year. The Aged Care Quality Standards require psychological assessment and management. Behavioural and psychological symptoms of dementia (BPSD) overlap significantly with palliative care behavioural symptom management. The Dementia Support Australia (DSA) programme provides expert guidance for RACF staff.

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Renal Impairment

CKD/ESKD considerations Uraemic encephalopathy is a significant cause of delirium and behavioural disturbance in end-stage kidney disease. Uraemic toxins, electrolyte imbalances, and acid-base disturbances must be addressed. Patients on dialysis who choose to withdraw experience specific psychological distress requiring sensitive multidisciplinary support.

Drug dosing Lorazepam (preferred benzodiazepine — no active metabolites). Haloperidol: no specific adjustment but use lower doses. Avoid morphine (active metabolites accumulate — M6G, M3G). Avoid diazepam/oxazepam (prolonged sedation). Olanzapine: no specific dose adjustment. Mirtazapine: moderate adjustment. Escitalopram: no adjustment.

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Hepatic Impairment

Hepatic encephalopathy Hepatic encephalopathy is a major cause of delirium and behavioural disturbance in advanced liver disease. Precipitants include GI bleeding, infection, constipation, electrolyte imbalance, and hepatotoxic medications. Lactulose and rifaximin are mainstays of treatment. Benzodiazepine sensitivity is markedly increased (avoid if possible).

Drug dosing All psychoactive medications should be started at lower doses and titrated cautiously. Avoid or use minimal doses of benzodiazepines (lorazepam is least hepatically metabolised). SSRIs: escitalopram max 10 mg/day; sertraline: reduce dose. Haloperidol: reduce dose, monitor QTc. Olanzapine: start 2.5 mg. Avoid valproate. Lactulose (20 mL BD–TDS) for hepatic encephalopathy.

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Immunocompromised

HIV/AIDS, transplant, immunotherapy Delirium in immunocompromised patients should always prompt investigation for CNS infection (toxoplasmosis, cryptococcal meningitis, CMV, PML, aspergillosis) and CNS lymphoma/leukaemia. Drug interactions are critical: ritonavir-boosted antiretrovirals inhibit CYP3A4 (reduce haloperidol, midazolam doses significantly). Corticosteroid-induced psychiatric symptoms (mania, depression, psychosis) are common and may require dose adjustment, antipsychotics, or benzodiazepines.

Psychological considerations HIV-related stigma, isolation, survivor guilt (particularly in long-term survivors), and disclosure concerns require culturally sensitive psychological support. Transplant recipients experiencing graft failure may face complex grief and identity disruption. Australian AIDS Council and NAPWHA provide peer support resources.

Aboriginal and Torres Strait Islander Health

Aboriginal and Torres Strait Islander Health Considerations

Aboriginal and Torres Strait Islander Australians experience significantly higher rates of psychological distress, social and emotional wellbeing (SEWB) disruption, and grief compared to the non-Indigenous population. The intergenerational trauma of colonisation, the Stolen Generations, systemic racism, socioeconomic disadvantage, and disconnection from Country, culture, language, and kinship systems profoundly shape the experience of dying and bereavement. The holistic SEWB framework—encompassing connection to body, mind/emotions, family/kinship, community, culture, Country, and spirituality/ancestors—must be the foundation of culturally safe palliative care.

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Critical cultural consideration: Western psychiatric concepts of "depression," "anxiety," and "demoralisation" may not resonate with Aboriginal and Torres Strait Islander peoples. Distress may be expressed somatically ("shame," "sorry business," "worry," "thinking too much"), through changes in social behaviour, or through connection with spiritual beliefs about sickness and death. Culturally validated assessment tools and Indigenous health workers are essential.

Key Considerations for Emotional and Behavioural Symptoms

Sorry business and grief

Aboriginal and Torres Strait Islander communities practice elaborate sorry business (mourning) protocols that vary between communities. Sorry business may last weeks to months and involve multiple community members. Clinicians must respect and facilitate participation in sorry business. Excessive or prolonged grief responses may be complicated by cumulative grief ("proliferated grief") from frequent community losses. The Australian Indigenous Doctors' Association (AIDA) provides guidance on culturally safe grief support.

Social and emotional wellbeing (SEWB)

The SEWB framework (developed by the National Aboriginal Community Controlled Health Organisation — NACCHO) reconceptualises mental health as being about connections: to body, mind/emotions, family/kinship, community, culture, Country, and spirituality/ancestors. Disruption in any domain can cause distress. Assessment should explore all domains using culturally appropriate approaches, ideally with the support of Aboriginal and Torres Strait Islander health workers or liaison officers.

Culturally safe assessment tools

Standard screening tools (PHQ-9, GAD-7) may not adequately capture Indigenous expressions of distress. The Social and Emotional Wellbeing (SEWB) Measure and the Westerman Aboriginal Symptoms Checklist (WASC) are culturally validated alternatives developed for Aboriginal and Torres Strait Islander populations. Use of these tools should be guided by trained practitioners. The Distress Thermometer can be used with visual cue cards and interpreter support.

Delirium recognition

Delirium may be misinterpreted through a cultural lens (e.g., communication with ancestors, spiritual experiences, or "sorry business" effects). Conversely, culturally normative behaviours may be incorrectly labelled as delirium. Aboriginal health workers and family members who know the patient's baseline behaviour are critical to accurate delirium recognition. Language barriers compound this challenge—many patients in remote communities speak English as a second, third, or fourth language.

Traditional healing and spiritual care

Traditional healing practices, including the role of Elders, traditional healers (ngangkari in some Central Australian communities), smoking ceremonies, and connection to Country are integral to managing distress and behavioural symptoms. These should be respected and integrated with Western medical management, not viewed as competing approaches. The Ngangkari programme (NPY Women's Council) and similar initiatives provide traditional healing services in some regions.

Dying on Country

Many Aboriginal and Torres Strait Islander people express a strong wish to return to their Country (homeland) to die. This profoundly impacts psychological wellbeing and should be facilitated where possible. Dying away from Country may cause significant spiritual distress. Telehealth palliative care, Remote Area Palliative Care programmes, and the Royal Flying Doctor Service can support community-based end-of-life care in remote communities.

Workforce and access

There is a critical shortage of Aboriginal and Torres Strait Islander health workers, psychologists, and psychiatrists in rural and remote Australia. Aboriginal Community Controlled Health Organisations (ACCHOs) are the preferred providers for many communities. Telehealth and digital mental health resources (e.g., MindSpot Indigenous programme, 13YARN crisis line) can improve access. Culturally safe training for all palliative care clinicians is mandated by the NSQHS Comprehensive Care Standard.

Children and family

Aboriginal and Torres Strait Islander children may witness dying and death within family and community contexts more commonly than non-Indigenous children. Age-appropriate cultural explanations and support from Elders, family, and community are essential. The Close the Gap framework identifies child and adolescent social and emotional wellbeing as a priority area. Intergenerational trauma from the Stolen Generations means that separation of children from dying parents must be approached with extreme sensitivity.

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Key Australian resources:
• 13YARN — 13 92 76 — crisis support line for Aboriginal and Torres Strait Islander peoples
• Lifeline — 13 11 14 — 24-hour crisis support (multilingual)
• Palliative Care Australia — National Palliative Care Standards and position statements on Indigenous palliative care
• NACCHO — National Aboriginal Community Controlled Health Organisation — SEWB framework and clinical guidelines
• AIDA — Australian Indigenous Doctors' Association
• AIHW — Closing the Gap reports and health outcome data
• 1800RESPECT — 1800 737 732 — domestic/family violence counselling (relevant to behavioural and emotional safety)

📚 References

1. Kissane DW, Clarke DM, Street AF. Demoralization syndrome — a relevant psychiatric diagnosis for palliative care. J Palliat Care. 2001;17(1):12–21.
2. Kissane DW, Wein S, Love A, et al. The Demoralization Scale: a report of its development and preliminary validation. J Palliat Care. 2004;20(4):269–276.
3. Grassi L, Caruso R, Nanni MG. Somatization and somatic symptom presentation in cancer: a neglected area. Int Rev Psychiatry. 2013;25(1):41–51.
4. Chochinov HM, Hack T, Hassard T, et al. Dignity therapy: a novel psychotherapeutic intervention for patients near the end of life. J Clin Oncol. 2005;23(24):5520–5525.
5. Breitbart W, Rosenfeld B, Gibson C, et al. Meaning-centered group psychotherapy for patients with advanced cancer: a pilot randomized controlled trial. Psychooncology. 2010;19(1):21–28.
6. National Palliative Care Strategy 2018. Australian Government Department of Health. Canberra: Commonwealth of Australia; 2018.
7. Palliative Care Australia. National Palliative Care Standards. 4th ed. Canberra: Palliative Care Australia; 2018.
8. Australian Commission on Safety and Quality in Health Care (ACSQHC). National Safety and Quality Health Service Standards. 2nd ed. Sydney: ACSQHC; 2021.
9. National Comprehensive Cancer Network (NCCN). Distress Management Guidelines. Version 2.2023. Plymouth Meeting, PA: NCCN; 2023.
10. 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.
11. Agar MR, Lawlor PG, 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.
12. Australian Institute of Health and Welfare (AIHW). Palliative care services in Australia. Cat. no. HWI 232. Canberra: AIHW; 2023.
13. Westerman T. Westerman Aboriginal Symptoms Checklist for Youth (WASC). Perth: Westerman Aboriginal Psychological Services; 2004.
14. National Aboriginal Community Controlled Health Organisation (NACCHO). NACCHO 10 Point Plan 2021–2030. Canberra: NACCHO; 2021.
15. Hudson P, Remedios C, Thomas K, et al. Clinical guidelines for the palliative care of people with non-malignant respiratory disease. Aust Fam Physician. 2012;41(12):955–959.
16. Warne D, McPherson K. Aboriginal and Torres Strait Islander grief and loss: a review of the literature. Aust Psychol. 2003;38(1):56–62.
17. Currow DC, Agar MR, To THM, et al. Defining refractory distress in palliative care. J Palliat Med. 2018;21(S1):S50–S57.

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).