Palliative Care in Heart Failure

Last updated 1 Jun 2026 · Palliative care

📋 Key Information Summary

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Heart failure (HF) trajectory is characterised by unpredictable decline interspersed with acute decompensations; early integration of palliative care improves symptom burden and quality of life without shortening survival.
NYHA Class III–IV patients experience dyspnoea, fatigue, oedema, and cachexia that significantly impair daily function; palliative care referral should be considered at NYHA III and is strongly recommended at NYHA IV.
Diuretics remain the cornerstone of fluid overload management in advanced HF; IV frusemide (Lasix®) 40–80 mg is first-line for acute congestion, with metolazone (Zaroxolyn®) as a potent oral adjunct for diuretic resistance.
Loop diuretic dosing in palliative care is symptom-directed rather than weight-driven; the goal is comfort, not euvolaemia, and must be individualised to patient preferences.
ICD (implantable cardioverter-defibrillator) deactivation should be discussed with all patients approaching end of life; repeated appropriate or inappropriate shocks cause significant distress and rarely improve quality of life.
CRT (cardiac resynchronisation therapy) can be continued or deactivated based on symptom benefit; a functioning CRT-P or CRT-D may reduce dyspnoea and should not be reflexively deactivated.
Low-dose opioids (oral morphine 2.5–5 mg PRN) are first-line for refractory breathlessness in advanced HF; start low, titrate slowly, and prescribe with aperients.
Chest pain in end-stage HF is managed with sublingual GTN, low-dose opioids, and benzodiazepines for anxiety-related chest tightness; exclude acute coronary syndrome if the patient's goals include active treatment.
Advance care planning (ACP) discussions should be initiated early and revisited at every stage transition; use Respecting Patient Choices® or equivalent state-based frameworks.
Aboriginal and Torres Strait Islander Australians experience HF at higher rates with younger onset; culturally safe palliative care requires community engagement, family-centred decision-making, and access to Aboriginal Community Controlled Health Organisations (ACCHOs).
Withdrawal of disease-modifying HF medications (ACE inhibitors, beta-blockers, mineralocorticoid receptor antagonists) is appropriate when treatment burden outweighs benefit; deprescribing should be gradual and guided by symptoms.
Renal function often deteriorates in advanced HF (cardiorenal syndrome); diuretic doses and electrolyte monitoring must be adjusted accordingly, and nephrology co-management may be needed for ultrafiltration decisions.

Introduction & Australian Epidemiology

Heart failure is a progressive clinical syndrome affecting approximately 500,000 Australians, with prevalence increasing sharply with age. The Australian Institute of Health and Welfare (AIHW) reports that heart failure is responsible for over 65,000 hospitalisations annually, and it remains the leading cause of preventable hospitalisation in people aged 65 and older. Despite advances in disease-modifying therapies — including angiotensin receptor–neprilysin inhibitors (ARNIs), sodium–glucose co-transporter 2 (SGLT2) inhibitors, and device therapy — the trajectory of advanced heart failure is characterised by recurrent decompensations, progressive functional decline, and high symptom burden.

Palliative care integration in heart failure has historically been delayed compared with oncology, largely because the HF disease trajectory is unpredictable, with acute decompensations followed by partial recovery (the "rollercoaster" pattern). International and Australian data show that fewer than 20% of HF patients receive specialist palliative care, and many are referred only in the last weeks of life. The Australian Commission on Safety and Quality in Health Care (ACSQHC) and the National Heart Foundation of Australia recommend early palliative care as an adjunct to guideline-directed medical therapy (GDMT), not as an alternative.

This topic integrates palliative care with optimised cardiac management across four key domains: symptom classification and management (NYHA III/IV), diuretic and fluid overload strategies, device decision-making, and the management of chest pain and breathlessness. The overarching goal is to improve quality of life, reduce unnecessary hospitalisations, and support patients and families through the continuum of advanced heart failure.

⚠️

Key concept: Palliative care in heart failure is not "giving up." It runs in parallel with optimal cardiac management and can be escalated or de-escalated as the patient's condition changes. Disease-modifying therapy should continue until the treatment burden outweighs benefit.

Metric	Australia (approximate)
Estimated HF prevalence	~500,000 (2.0% adult population)
Annual HF hospitalisations	>65,000 (AIHW 2022–23)
5-year mortality (all-comers)	~50–75%
NYHA III–IV at diagnosis	~30–40%
Receiving specialist palliative care	<20%
ATSI HF burden (age-standardised)	1.6–2.4× higher than non-Indigenous Australians

NYHA III/IV Symptoms

The New York Heart Association (NYHA) functional classification remains the most widely used framework for grading symptom severity in heart failure and guides treatment decisions, prognosis, and the timing of palliative care referral.

NYHA III

Marked Limitation

Comfortable at rest but symptomatic with less-than-ordinary activity (e.g., walking 20–50 metres on flat ground, dressing). Patients experience dyspnoea, fatigue, or palpitations with routine daily tasks.

Setting: Community with palliative care co-management; consider specialist palliative care referral

NYHA IV

Symptomatic at Rest

Unable to carry out any physical activity without discomfort; symptoms of HF present at rest. Any physical activity worsens symptoms. Often housebound or bedbound with significant dependency.

Setting: Specialist palliative care strongly recommended; consider inpatient hospice or home-based palliative care

Symptom Burden in Advanced HF

Patients with NYHA III–IV heart failure experience a symptom burden comparable to or exceeding that of advanced cancer. The most prevalent symptoms include:

Dyspnoea — present in 80–95% of NYHA IV patients; worsens with supine position (orthopnoea, paroxysmal nocturnal dyspnoea); the single most distressing symptom reported.
Fatigue and weakness — affects 70–90%; driven by low cardiac output, skeletal muscle myopathy, deconditioning, and comorbidities.
Peripheral oedema — often refractory to diuretics in advanced disease; can cause skin breakdown, reduced mobility, and distress.
Cachexia and muscle wasting — cardiac cachexia (unintentional loss >5% body weight over 12 months in non-oedematous patients) indicates poor prognosis (median survival <12 months).
Depression and anxiety — prevalence 20–40%; underdiagnosed and undertreated; associated with worse HF outcomes and increased hospitalisation.
Pain — reported by 40–70%; may be cardiac (ischaemic), musculoskeletal, hepatic congestion, or related to comorbidities.
Cognitive impairment — "HF brain" affects up to 50% of patients; driven by cerebral hypoperfusion, cerebral microemboli, and neurohormonal activation; impairs capacity for ACP discussions.
Poor appetite and nausea — hepatic and gut congestion, medications, and depression all contribute.

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Screen for distress: Use validated tools such as the Edmonton Symptom Assessment System–revised (ESAS-r) or the Kansas City Cardiomyopathy Questionnaire (KCCQ) at every HF clinic visit. Refer to specialist palliative care if the ESAS-r total symptom burden score exceeds 30/90 or any single symptom scores ≥7/10.

Triggers for Palliative Care Referral

Consider specialist palliative care referral when any of the following apply:

NYHA Class IV or persistent NYHA III despite optimal GDMT
≥2 hospitalisations for acute decompensation in the preceding 12 months
Cardiac cachexia or progressive unintentional weight loss
Patient or family-expressed desire for comfort-focused care
Consideration of LVAD or transplant listing (for goals-of-care discussion, not necessarily contraindication)
Device-related decision-making (ICD deactivation, CRT continuation)
Refractory symptoms despite maximal pharmacotherapy

Diuretics & Fluid Overload

Diuretics are the most effective symptomatic therapy for congestion in heart failure and remain a cornerstone of palliative cardiac management. In the palliative context, the goal shifts from achieving a target weight or euvolaemia to optimising patient comfort. Fluid overload management must be individualised, balancing symptom relief against the risks of renal impairment, electrolyte disturbance, and excessive dehydration.

Loop Diuretics

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Frusemide (Furosemide)

Lasix® · Urex® · Generic · Loop diuretic

Adult dose (PO) 20–80 mg PO daily or BD; titrate to symptom response; in advanced HF, oral doses up to 250–500 mg/day may be required

Adult dose (IV) 20–80 mg IV stat for acute decompensation; continuous infusion 5–20 mg/hr for refractory oedema

Route PO, IV, IM (IM less reliable absorption)

Onset PO: 30–60 min; IV: 5–15 min

Renal adjustment eGFR <30 mL/min: higher doses needed (bioavailability of oral form increases with renal impairment); IV preferred in severe renal impairment

PBS status ✔ PBS General Benefit

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Bumetanide

Burinex® · Generic · Loop diuretic

Adult dose 1–5 mg PO daily or BD; may be used when frusemide resistance is suspected (more consistent oral bioavailability ~80% vs frusemide ~50%)

Renal adjustment eGFR <30: dose increase may be needed but absorption not significantly altered

PBS status ✔ PBS General Benefit

Thiazide-Type Diuretics (Diuretic Resistance)

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Metolazone

Zaroxolyn® · Metolazone Sandoz® · Thiazide-like diuretic

Adult dose 2.5–5 mg PO once daily for 2–3 days (sequential nephron blockade with loop diuretic); do not use indefinitely without monitoring

Indication Diuretic resistance (inadequate response to high-dose loop diuretic); synergistic effect when combined with loop diuretics

Renal adjustment Use with caution if eGFR <30; may lose efficacy in severe renal impairment

PBS status ⚠ PBS Authority Required

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Chlorthalidone

Hygroton® · Thiazide-like diuretic

Adult dose 12.5–25 mg PO once daily; alternative to metolazone for sequential nephron blockade

PBS status ⚠ PBS Authority Required

Mineralocorticoid Receptor Antagonists (MRAs)

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Spironolactone

Aldactone® · Spiractin® · Generic · MRA

Adult dose (HF) 12.5–25 mg PO daily; titrate to 50 mg if tolerated; mortality benefit in NYHA II–IV (RALES trial)

Palliative dose 12.5–25 mg PO daily; may be continued for symptom benefit if K⁺ <5.0 mmol/L and eGFR >30

Renal adjustment Avoid if eGFR <30 or K⁺ >5.0 mmol/L; monitor K⁺ within 3 days of initiation and after dose changes

PBS status ✔ PBS General Benefit

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Eplerenone

Inspra® · Selective MRA

Adult dose 25–50 mg PO daily; alternative to spironolactone if gynaecomastia or breast tenderness limits use

Renal adjustment eGFR 30–49: start 25 mg every other day; eGFR <30: avoid

PBS status ⚠ PBS Authority Required (post-MI LV dysfunction)

⚠️

Palliative diuretic strategy: In the last weeks of life, diuretic dose may be reduced or discontinued if the patient prioritises comfort over fluid management. If continuing, monitor renal function (U&E, creatinine) at least weekly. Consider subcutaneous frusemide (off-label, 20–80 mg SC via syringe driver or bolus) when IV access is no longer feasible and oral absorption is unreliable.

Diuretic Resistance: Practical Approach

Confirm adherence and absorption

Assess medication compliance; consider gut oedema reducing oral absorption — switch to IV if suspected.

Optimise loop diuretic dose

Increase frusemide to 80–250 mg PO BD or equivalent; consider bumetanide for better bioavailability.

Add sequential nephron blockade

Metolazone 2.5–5 mg PO daily (give 30 min before loop diuretic) or chlorthalidone 12.5–25 mg daily.

Consider continuous IV infusion

Frusemide 5–20 mg/hr continuous infusion (often requires inpatient or community palliative care admission).

Ultrafiltration (selected patients)

Consider if goals include active management; requires cardiology/nephrology input and hospital setting. Not typically palliative.

Electrolyte Monitoring

Parameter	Frequency	Action Threshold
Potassium (K⁺)	Within 3–7 days of dose change; then every 2–4 weeks if stable	<3.5 or >5.5 mmol/L: adjust diuretic/MRA, supplement if needed
Sodium (Na⁺)	Same as potassium	<130 mmol/L: dilutional hyponatraemia — fluid restriction, review diuretics
Creatinine / eGFR	Same as potassium	eGFR decline >20%: consider reducing diuretic dose; if symptomatic, accept modest renal impairment (permissive renal dysfunction)
Magnesium (Mg²⁺)	Every 2–4 weeks	<0.7 mmol/L: supplement with oral magnesium orotate (Mg-Organon®)
Uric acid	As clinically indicated	Gout flares common with diuretics; manage per standard protocols

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Palliative care principle: In the last days of life, all non-essential medications — including diuretics — should be reviewed. If the patient is no longer eating/drinking and is comfortable, diuretics can be ceased. If active breathlessness from congestion is present, low-dose IV/SC frusemide may be continued for comfort.

Device Decisions

Patients with advanced heart failure frequently have implantable cardiac devices, including ICDs (implantable cardioverter-defibrillators), CRT (cardiac resynchronisation therapy) devices, and permanent pacemakers. Device-related decisions are among the most complex and emotionally charged aspects of palliative care in cardiology. These discussions require sensitivity, multidisciplinary input, and clear documentation.

Types of Devices and Palliative Considerations

Device	Function	Palliative Consideration
ICD (single- or dual-chamber)	Delivers defibrillation shocks for ventricular tachycardia/fibrillation	Deactivation recommended when goals shift to comfort; shocks at end of life are painful and distressing; do not prevent death from non-arrhythmic causes (pump failure)
CRT-D	CRT with defibrillation capability	CRT pacing component may improve symptoms; consider deactivating shock function while maintaining CRT pacing if symptomatic benefit persists
CRT-P	CRT pacing only (no defibrillator)	May improve dyspnoea and functional capacity; continue if providing symptom benefit; no harm in keeping active at end of life
Permanent pacemaker (PPM)	Bradycardia pacing	Pacemaker-dependent patients: withdrawal will result in symptomatic bradycardia and death; discuss with patient/family; rarely deactivated
LVAD (left ventricular assist device)	Mechanical circulatory support	Destination therapy (not bridged to transplant): complex deactivation discussions required; deactivation is legal and ethical with informed consent; specialist palliative care essential

ICD Deactivation: Practical Guide

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Patients have the legal right to request ICD deactivation at any time. This is considered a withdrawal of treatment, not euthanasia or assisted dying. Physicians have an ethical obligation to facilitate this request. If the treating team is unable or unwilling, they must arrange timely transfer of care to a colleague who will.

Initiate the conversation

"I'd like to discuss what happens with your defibrillator as your heart condition progresses. The device can deliver strong shocks — we need to talk about whether this aligns with your wishes." Begin at NYHA III or when prognosis is discussed.

Explain device function clearly

ICD prevents sudden arrhythmic death but does not prevent death from pump failure. Patients with severe HF more commonly die from progressive pump failure than from ventricular arrhythmia.

Offer partial deactivation

Shock therapy can be deactivated independently of anti-tachycardia pacing (ATP). ATP is painless and may be continued. CRT pacing can be maintained.

Arrange device reprogramming

Performed by cardiac physiologist or electrophysiologist. Takes <5 minutes with a programmer over the device. Document in medical record and advance care directive.

Document and communicate

Record decision in advance care plan; ensure all treating teams (GP, palliative care, cardiologist, after-hours services) are aware; provide patient with written confirmation.

When to Discuss Device Decisions

At the time of device implantation (pre-implantation counselling should include end-of-life scenarios)
At every NYHA class transition (especially II → III and III → IV)
After ≥2 hospitalisations for decompensation in 12 months
When considering device replacement (generator change) — battery replacement is an opportunity to revisit goals
When initiating palliative care or advance care planning
When the patient or family raises quality-of-life concerns

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Generator replacement at end of life: If a patient's ICD generator reaches end-of-life and the patient is in NYHA IV or receiving palliative care, replacement should not be performed reflexively. A goals-of-care discussion should precede any elective procedure, including device replacement.

LVAD Deactivation

Left ventricular assist device deactivation is a particularly complex scenario. Patients on destination LVAD therapy (not listed for transplant) have a median survival of 2–4 years with the device. When the patient's goals shift to comfort, deactivation can be discussed. Key points:

LVAD deactivation results in death within minutes to hours in the absence of residual cardiac function
The patient and family must be counselled on expected timeline and symptom management
Opioid and benzodiazepine pre-loading should be provided before deactivation
Procedure should occur in a supportive setting (hospice, home with palliative care team, or ICU/CCU with palliative input)
Device specialist (VAD coordinator) must be involved in planning
Legal and ethical frameworks in all Australian states and territories support deactivation with patient consent

Chest Pain & Breathlessness

Chest pain and breathlessness are the two most distressing symptoms in advanced heart failure and the primary drivers of emergency department presentation and hospitalisation. Effective palliative management requires a systematic approach that distinguishes ischaemic pain from non-cardiac causes, addresses the multiple drivers of dyspnoea, and employs both pharmacological and non-pharmacological strategies.

Breathlessness Management

Dyspnoea in advanced HF is multifactorial — pulmonary congestion, reduced cardiac output, respiratory muscle weakness, deconditioning, anaemia, anxiety, and pleural effusions all contribute. Management should address each reversible cause while employing comfort measures.

Pharmacological Management of Refractory Dyspnoea

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Morphine (oral)

Ordine® · Sevrédol® · Generic · Opioid analgesic

Adult dose (dyspnoea) 2.5–5 mg PO PRN every 4 hours; titrate by 2.5–5 mg increments every 3–5 days; typical dose range 5–10 mg QID for refractory dyspnoea

Modified release Kapanol® or MS Contin® 10–20 mg PO BD once PRN dose requirements established

Renal adjustment eGFR 10–50: extend interval to 6-hourly; eGFR <10: reduce dose by 50% and extend interval; use with extreme caution; consider hydromorphone as alternative

Essential co-prescribing Lactulose 15 mL PO BD PRN or macrogol (Movicol®) for constipation prophylaxis

PBS status ✔ PBS General Benefit

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Oxycodone

Endone® · OxyNorm® · Generic · Opioid analgesic

Adult dose (dyspnoea) 2.5–5 mg PO PRN every 4 hours; alternative to morphine if intolerance or nausea

Renal adjustment eGFR <30: reduce dose by 50% and extend interval; avoid if eGFR <10 (active metabolites accumulate)

PBS status ✔ PBS General Benefit

⚠️

Opioid safety in HF: Start at the lowest effective dose. Heart failure patients are opioid-sensitive due to reduced hepatic/renal clearance and low body mass in cachexia. Monitor for respiratory depression, sedation, and constipation. Opioid-induced nausea is common initially — prescribe metoclopramide (Maxolon®) 10 mg PO TDS PRN for the first 5–7 days.

Anxiolytics for Dyspnoea-Related Anxiety

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Diazepam

Ducene® · Valium® · Generic · Benzodiazepine

Adult dose 2–5 mg PO PRN BD-TDS for anxiety-associated dyspnoea; use lowest effective dose; short courses preferred

Renal adjustment Active metabolites accumulate in renal impairment; prefer lorazepam (no active metabolites) in eGFR <30

PBS status ✔ PBS General Benefit

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Lorazepam

Ativan® · Generic · Benzodiazepine

Adult dose 0.5–1 mg PO or SL PRN BD-TDS; preferred in renal impairment (no active metabolites); faster onset via sublingual route

PBS status ✔ PBS General Benefit

Non-Pharmacological Strategies for Breathlessness

Positioning: Upright or semi-reclined (45°); sitting in a chair with forearms supported on a table is often more comfortable than propped up in bed.
Fan therapy: A handheld fan directed at the face activates trigeminal nerve receptors and reduces the sensation of dyspnoea. Evidence-supported, zero-cost, and patient-controlled.
Pursed-lip breathing: Reduces respiratory rate, increases tidal volume, and decreases air trapping; taught by physiotherapy.
Breathing exercises and relaxation: Guided by palliative care physiotherapy or occupational therapy.
Energy conservation and pacing: Occupational therapy assessment for activities of daily living; prioritisation of meaningful activities.
Pleural drainage: Therapeutic thoracocentesis for large pleural effusions causing dyspnoea; consider indwelling pleural catheter (IPC) for recurrent effusions in patients with reasonable prognosis.

Chest Pain Management

Chest pain in advanced HF may be ischaemic (supply–demand mismatch or acute coronary syndrome), non-cardiac (musculoskeletal, oesophageal, anxiety), or related to right heart congestion (hepatic capsule distension). A systematic approach is essential.

Cause	Clinical Features	Management
Ischaemic (chronic angina)	Substernal, exertion-related, relieved by rest or GTN	Sublingual GTN PRN; long-acting nitrates (ISMO® 20 mg PO BD); if not on beta-blocker, consider low-dose metoprolol 23.75–47.5 mg PO daily
Acute coronary syndrome	New-onset or changing pattern; may be atypical in elderly/DM	If goals include active management: standard ACS pathway; if comfort-focused: GTN + morphine + benzodiazepine
Hepatic congestion	RUQ discomfort, hepatomegaly, elevated JVP	Diuretic optimisation; simple analgesia (paracetamol 1 g QID)
Musculoskeletal	Positional, reproducible on palpation, rib cage/chest wall	Paracetamol; topical NSAIDs; avoid systemic NSAIDs (fluid retention, worsen HF)
Anxiety-related	Tight band-like sensation, associated with hyperventilation, no exertional pattern	Benzodiazepines (diazepam 2 mg or lorazepam 0.5 mg PRN); psychological support; mindfulness-based interventions

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Glyceryl trinitrate (GTN)

Anginine® · Nitrolingual® · Generic · Nitrate vasodilator

Adult dose 600 mcg (one tablet or 1–2 sprays) SL PRN; may repeat every 5 minutes × 3 for acute chest pain

Caution Avoid if systolic BP <90 mmHg; caution if on PDE5 inhibitors (sildenafil/tadalafil)

PBS status ✔ PBS General Benefit

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Paracetamol

Panadol® · Panamax® · Generic · Non-opioid analgesic

Adult dose 500 mg–1 g PO every 4–6 hours; maximum 4 g/day (2 g/day if hepatic impairment or low body weight <50 kg)

Role in HF First-line for non-ischaemic chest pain; safe in HF (no fluid retention); does not worsen renal function

PBS status ✔ PBS General Benefit

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Avoid NSAIDs in heart failure: Non-steroidal anti-inflammatory drugs (including ibuprofen, naproxen, diclofenac, and COX-2 inhibitors) cause sodium and water retention, increase blood pressure, and antagonise the effects of diuretics, ACE inhibitors, ARBs, and MRAs. They significantly increase the risk of decompensation and acute kidney injury. Use paracetamol, opioids, or topical agents instead.

Last-Days Symptom Management

In the final days of life, symptom management priorities shift to maximising comfort. A syringe driver (McKinley T34 or equivalent) may be used for continuous subcutaneous infusion when oral medications are no longer tolerated.

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Morphine SC (syringe driver)

Subcutaneous infusion — end-of-life care

Starting dose If opioid-naïve: morphine 5–10 mg SC over 24 hours; if previously on oral opioids, convert at 1:2 ratio (oral:SC) and titrate

Breakthrough Morphine 2.5–5 mg SC PRN every 1–2 hours; dose = 1/6th to 1/4th of total 24-hour subcutaneous dose

Common additives in syringe driver Haloperidol 2.5–5 mg/24h SC (nausea); midazolam 10–20 mg/24h SC (agitation, dyspnoea); dexamethasone 4–8 mg/24h SC (if not contraindicated — for nausea, appetite, cerebral oedema)

Pathophysiology of Advanced Heart Failure

Understanding the pathophysiology of advanced heart failure is essential for effective palliative management. The terminal phase of HF is characterised by a self-perpetuating cycle of neurohormonal activation, myocardial remodelling, and end-organ dysfunction that ultimately becomes refractory to pharmacological intervention.

Neurohormonal activation: Persistent activation of the renin–angiotensin–aldosterone system (RAAS) and sympathetic nervous system drives vasoconstriction, sodium and water retention, myocardial fibrosis, and progressive ventricular remodelling. Despite maximal GDMT (ACE-I/ARB/ARNI, beta-blocker, MRA, SGLT2i), residual neurohormonal activation persists in advanced disease.
Cardiorenal syndrome: Reduced cardiac output triggers renal vasoconstriction and sodium retention; renal dysfunction impairs diuretic responsiveness and causes fluid overload. This bidirectional relationship accelerates decline.
Venous congestion: Elevated filling pressures cause hepatic congestion (leading to cardiac cirrhosis in chronic cases), gut oedema (malabsorption, bacterial translocation), and pulmonary congestion (alveolar oedema, pleural effusions).
Cardiac cachexia: Driven by chronic inflammation (elevated TNF-α, IL-6), neurohormonal activation, anorexia, gut malabsorption, and increased metabolic demand. Loss of lean muscle mass >5% over 12 months (non-oedematous) defines cardiac cachexia and carries a median survival of <12 months.
Arrhythmia substrate: Myocardial fibrosis creates a substrate for ventricular tachycardia and atrial fibrillation; sudden cardiac death accounts for 25–50% of HF deaths, though this proportion decreases with advancing disease (pump failure predominates).

Investigations

Investigations in advanced HF should be guided by the patient's goals of care. In the palliative context, the question is: "Will this test change management in a way that aligns with the patient's goals?" Routine monitoring of fluid status, renal function, and electrolytes remains important for diuretic management, but invasive or burdensome investigations should be avoided if they will not alter the care plan.

Essential BNP / NT-proBNP Serial BNP monitoring guides diuretic therapy and prognosis. NT-proBNP >5000 pg/mL associated with very high short-term mortality. Available via MBS item 66536 (NT-proBNP). Useful if diuretic dose adjustment is being considered.

Essential Urea, Electrolytes, Creatinine (U&E) Monitor renal function and electrolytes during diuretic therapy. Minimum every 2–4 weeks if stable; weekly during dose titration or acute decompensation. MBS item 66509.

Essential Full Blood Count (FBC) Anaemia is common in advanced HF (30–50%) and contributes to dyspnoea and fatigue; check iron studies (ferritin, transferrin saturation) as iron deficiency is treatable with IV iron. MBS item 66512.

Available Liver Function Tests (LFTs) Hepatic congestion causes elevated ALT, AST, and bilirubin. Progressive LFT derangement indicates worsening right heart failure. MBS item 66515.

Available Echocardiography Transthoracic echo reassessment is indicated when clinical status changes significantly. LVEF, valvular function, right heart assessment, and estimated pulmonary artery pressure guide prognosis and device decisions. MBS item 55124.

Available Chest X-ray Assesses pulmonary congestion, pleural effusions, and cardiomegaly. Helpful for confirming fluid overload but not required routinely if clinical assessment is clear. MBS item 58506.

Consider referral Right heart catheterisation Indicated only if considering LVAD, transplant, or ultrafiltration; not appropriate for purely palliative goals.

Specialist Cardiac MRI Assesses myocardial fibrosis (late gadolinium enhancement) and infiltrative disease; rarely needed in palliative setting unless diagnostic uncertainty exists.

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Palliative investigation principle: As goals shift to comfort, reduce investigation intensity. Blood tests should serve symptom management (e.g., U&E for diuretic monitoring), not prognostication. Avoid "routine" tests that do not inform actionable decisions. Discuss with the patient: "We can check your bloods to make sure your diuretic is working safely, but we don't need to do tests that won't change how we manage your symptoms."

Risk Stratification & Prognostication

Prognostication in heart failure is notoriously difficult compared with cancer, where median survivals are more predictable. The "surprise question" — "Would you be surprised if this patient died in the next 12 months?" — remains a useful screening tool for initiating palliative care discussions. Several validated risk scores can supplement clinical judgement.

Risk Score	Components	Utility in Palliative Setting
Seattle Heart Failure Model (SHFM)	Age, sex, NYHA, LVEF, BP, medications, devices, labs (Na⁺, cholesterol, uric acid, haemoglobin, lymphocyte %, BNP)	Estimates 1–3 year survival; web-based calculator; useful for framing prognosis discussions. Website: depts.washington.edu/shfm
MAGGIC Score	Age, sex, NYHA, LVEF, BMI, BP, diabetes, COPD, medications, creatinine, Na⁺, smoking	Meta-analysis-derived; estimates 1–3 year mortality; available as web calculator
ESCAPE Risk Score	BUN, BP, orthopnoea duration, 6-min walk, BNP, sodium	Inpatient 6-month mortality prediction; useful during hospital admissions for decompensation
"Surprise question"	Clinician intuition	Sensitivity ~80% for 12-month mortality when answer is "No, I would not be surprised"; triggers palliative care referral consideration

Poor Prognostic Indicators in Advanced HF

NYHA Class IV despite optimal GDMT
LVEF <20%
Cardiac cachexia (unintentional weight loss >5% in 12 months)
Recurrent hospitalisations (≥3 in 12 months)
Persistent hyponatraemia (Na⁺ <130 mmol/L)
Renal dysfunction refractory to diuretic adjustment (cardiorenal syndrome type 2)
NT-proBNP >5000 pg/mL despite treatment
Inotrope dependence (requirement for continuous IV inotropes: dobutamine, milrinone)
Declining functional status (6-minute walk <300 metres or bed-bound)
Implantable device reaching battery end-of-life with patient not wanting replacement

Monitoring

Monitoring in palliative HF care should be proportionate to the patient's goals. The frequency and intensity of monitoring should decrease as goals shift from disease-modifying to purely comfort-focused.

Phase	Monitoring	Frequency
Stable palliative (NYHA III)	Weight, BP, HR, SpO₂, U&E, BNP, symptom assessment (ESAS-r/KCCQ), fluid balance	Clinic every 2–4 weeks; bloods every 4–6 weeks
Unstable/declining (NYHA IV)	As above + daily weight at home, weekly U&E, echocardiography if clinical change	Clinic or phone weekly; bloods weekly during diuretic changes
End of life (last weeks)	Symptom assessment only; U&E only if informing diuretic dose; no routine BNP	Daily contact (palliative care team, GP, or community nurse)
Active dying (last days)	Comfort observations only; respiratory rate, consciousness level, symptom distress	Continuous or 4-hourly observations by nursing staff or carers

Self-Management and Telemonitoring

Remote monitoring programmes (e.g., telemonitoring of daily weight, blood pressure, and symptoms) have shown mixed results in randomised trials but may be useful for selected patients who wish to remain at home. Australian models include the Heart Foundation's MyHeart MyLife programme and state-based HF nurse-led telemonitoring services. These should be offered as adjuncts to, not replacements for, regular clinical review.

Deprescribing in Advanced HF

As heart failure progresses and goals of care shift, many disease-modifying medications become burdensome without proportional benefit. Deprescribing should be systematic, gradual, and guided by patient preferences.

Medications to Consider Stopping

Medication	Rationale for Cessation	How to Stop
Statins	No acute benefit; primary prevention role becomes irrelevant when prognosis is <12 months; reduces pill burden	Cease abruptly (no tapering needed)
Warfarin / DOACs (non-AF indication)	If prescribed for HF itself (no AF or VTE), evidence is limited; bleeding risk increases; reduce monitoring burden	Cease; no tapering for DOACs; for warfarin, INR will normalise over 2–5 days
Beta-blockers	May cause fatigue and hypotension in advanced HF; if causing symptomatic bradycardia or limiting diuretic efficacy	Taper gradually over 1–2 weeks (risk of rebound tachycardia and decompensation)
ACE inhibitors / ARBs / ARNI	May cause hypotension, renal impairment, cough; if symptomatic hypotension (SBP <90), consider dose reduction or cessation	Taper gradually over 1–2 weeks; monitor for rebound fluid retention
SGLT2 inhibitors (dapagliflozin, empagliflozin)	Low pill burden, few symptoms, but genital infections and volume depletion may occur; generally well tolerated even in advanced HF; may continue until last days	Cease when oral intake ceases or at comfort-care transition
Antiplatelet agents (aspirin, clopidogrel)	Bleeding risk; if no recent ACS/stent, primary prevention benefit is negligible at end of life	Cease abruptly

⚠️

Never stop abruptly: Beta-blockers, ACE inhibitors, ARBs, and clonidine must be tapered to avoid rebound hypertension, tachycardia, or decompensation. Diuretics may be continued for symptom control even in the last days if active congestion is causing distress.

Special Populations

🤰

Pregnancy

ACE inhibitors / ARBs / ARNI Contraindicated in pregnancy (teratogenic — renal agenesis, oligohydramnios). Switch to hydralazine + nitrates for afterload reduction if HF requires treatment.

Spironolactone Contraindicated (anti-androgen effects). Use cautiously if essential; eplerenone has less anti-androgen activity but limited data in pregnancy.

Warfarin Teratogenic in first trimester. Switch to LMWH if anticoagulation required.

Opioids for dyspnoea Use with extreme caution; risk of neonatal respiratory depression and withdrawal. Palliative care in pregnancy requires multidisciplinary input (obstetrics, neonatology, palliative care).

Peripartum cardiomyopathy Specific HF aetiology; may recover LVEF. Palliative care referral appropriate if LVEF remains <35% at 6 months postpartum despite GDMT.

👶

Paediatrics

Congenital heart disease Children with single-ventricle physiology or Fontan failure have unique palliative needs; families require intense psychosocial support.

Frusemide (paediatric) 1–2 mg/kg PO/IV every 6–12 hours; max 6 mg/kg/day in infants; monitor electrolytes closely.

Morphine for dyspnoea 100–200 mcg/kg PO/SC every 4 hours PRN; start at lower end; titrate carefully.

Device decisions ICDs are rare in paediatric HF; pacemaker deactivation in children raises additional ethical considerations; parental consent and child assent (if age-appropriate) required.

👴

Elderly (≥75 years)

Polypharmacy Review all medications; deprescribing is a priority. Use the STOPP/START criteria or Australian Deprescribing Network guidelines.

Diuretics Higher risk of falls, orthostatic hypotension, and electrolyte derangement. Home medication review (MBS item 900) recommended.

Opioids Start at 50% of standard adult dose; increased sensitivity due to reduced GFR and hepatic clearance. Higher fall risk with benzodiazepines.

Cognitive impairment If capacity is impaired, involve family/carer in advance care planning discussions; consider appointing a substitute decision-maker (medical power of attorney).

🫘

Renal Impairment

Cardiorenal syndrome Common in advanced HF; eGFR decline is expected. In palliative care, accept "permissive renal dysfunction" — tolerate creatinine rise if the patient remains comfortable and symptomatic congestion is controlled.

Diuretics Higher doses required; IV or SC route if oral absorption impaired. Metolazone less effective if eGFR <30.

Opioids Morphine metabolites (M6G) accumulate; prefer fentanyl or hydromorphone if eGFR <30. Reduce doses and extend intervals.

Dialysis decision If concurrent ESKD, the decision to start or continue dialysis must align with goals of care. Conservative kidney management (without dialysis) is a valid option with appropriate palliative support.

🫁

Hepatic Impairment

Cardiac hepatopathy Hepatic congestion from right heart failure causes acute hepatocyte injury (cholestatic pattern); chronic congestion may lead to cardiac cirrhosis. Avoid hepatotoxic medications.

Opioids Reduce doses by 50% in moderate hepatic impairment; morphine clearance is reduced. Avoid in severe hepatic failure or use with extreme caution.

Spironolactone Caution in hepatic impairment; may exacerbate hyperkalaemia; however, in cirrhotic ascites, spironolactone is the preferred diuretic.

🛡️

Immunocompromised

Post-transplant HF Heart transplant recipients may develop allograft vasculopathy or restrictive physiology. Immunosuppression regimen (tacrolimus, mycophenolate) interacts with many HF medications. Specialist input required.

Infection risk Immunocompromised patients with HF have higher infection risk; palliative care should include infection management planning (e.g., whether to treat pneumonia with antibiotics at end of life).

Aboriginal and Torres Strait Islander Health

Aboriginal and Torres Strait Islander Health Considerations

Disease burden

Aboriginal and Torres Strait Islander Australians experience heart failure at 1.6–2.4 times the rate of non-Indigenous Australians, with onset at a significantly younger age (median age at HF diagnosis ~55 years vs ~73 years in non-Indigenous Australians). Rheumatic heart disease (RHD) remains a leading cause of HF in remote communities, particularly in the Northern Territory, far north Queensland, and Western Australia. Ischaemic cardiomyopathy is also disproportionately prevalent due to higher rates of diabetes, smoking, obesity, and renal disease.

Palliative care access

Specialist palliative care services are scarce in rural and remote Aboriginal communities. Many communities rely on fly-in-fly-out (FIFO) palliative care teams or remote consultations via telehealth. Aboriginal Community Controlled Health Organisations (ACCHOs) are critical providers of end-of-life care but may lack dedicated palliative care funding. The concept of "palliative care" itself may not translate directly into Aboriginal language or cultural frameworks — end-of-life care may be understood through spiritual, family, and Country-based lenses.

Cultural safety

Advance care planning must be culturally appropriate. Many Aboriginal and Torres Strait Islander people prefer family-centred rather than individual decision-making. Discussions about death and dying may require the involvement of Elders, family spokespersons, or Aboriginal Health Workers/Practitioners (AHW/Ps). Avoid "death talk" protocols that are not endorsed by the community. Use locally developed ACP resources where available (e.g., Respecting Patient Choices® adapted versions, Menzies School of Health Research resources).

Sorry Business and kinship

Sorry Business (mourning practices) affects the availability of family members for care-giving and decision-making. Kinship obligations may mean multiple family members are involved in care decisions. Healthcare providers must be flexible with appointment scheduling and family meeting arrangements. Community disruption (e.g., multiple deaths in a short period) can overwhelm limited community health resources.

Medication access

Remote communities may lack pharmacy services; medication supply through ACCHOs, Remote Area Aboriginal Health Services (RAAHS), or Section 100 (S100) supplied medications is essential. Complex HF regimens (ACE-I, beta-blocker, MRA, SGLT2i, diuretics) may be difficult to maintain with intermittent community pharmacy access. Medication adherence is supported by Webster-pak® blister packs, medication management reviews (MBS item 900), and AHW/P-led medication education.

Device and hospital access

ICD/CRT implantation and follow-up requires tertiary hospital access. Remote patients may need to travel hundreds of kilometres for device checks. Telecardiology services (e.g., remote device interrogation) are expanding but not universally available. ICD deactivation discussions may be complicated by cultural beliefs about life and death, requiring sensitive, community-informed approaches.

Data and research gaps

There is limited Australian data on palliative care outcomes in Aboriginal and Torres Strait Islander HF patients. The AIHW reports that Indigenous Australians are less likely to receive specialist palliative care, more likely to die in hospital rather than at home, and have higher rates of potentially preventable hospitalisations for HF. Research priorities include culturally adapted palliative care models, community-based end-of-life care, and ACP frameworks developed with and by Aboriginal and Torres Strait Islander communities.

📚 References

1. National Heart Foundation of Australia and Cardiac Society of Australia and New Zealand. Australian Clinical Guidelines for Heart Failure 2024. Sydney: NHF; 2024.
2. Australian Institute of Health and Welfare. Heart, stroke and vascular disease — Australian facts 2024. AIHW Cat. No. CDK 011. Canberra: AIHW; 2024.
3. Jaarsma T, Beattie JM, Ryder M, et al. Palliative care in heart failure: a position statement from the palliative care workshop of the Heart Failure Association of the European Society of Cardiology. Eur J Heart Fail. 2009;11(5):433–443.
4. >Fromm RE, Nauman JA, Maier D, et al. Cardiac disease in the palliative care setting. In: Hanks G, Cherny NI, Christakis NA, et al., editors. Oxford Textbook of Palliative Medicine. 4th ed. Oxford: Oxford University Press; 2015:927–942.
5. Sobanski PZ, Alt-Epping B, Currow DC, et al. Palliative care for people living with heart failure: European Association for Palliative Care Task Force expert statement. Eur J Heart Fail. 2020;22(7):1136–1150.
6. Palliative Care Australia. National Palliative Care Standards. 5th ed. Canberra: PCA; 2018.
7. Australian Commission on Safety and Quality in Health Care. National Consensus Statement: Essential elements for safe and high-quality end-of-life care. Sydney: ACSQHC; 2015.
8. Raphael CE, O'Garr G, Scott IA, et al. Implantable cardioverter-defibrillator deactivation in advanced heart failure: a systematic review. Heart Lung Circ. 2022;31(4):493–502.
9. Yancy CW, Jessup M, Bozkurt B, et al. 2022 ACC/AHA/HFSA Guideline for the Management of Heart Failure: a report of the American College of Cardiology/American Heart Association Joint Committee. Circulation. 2022;145(18):e895–e1032.
10. Rankin J, Hossain M, Johnson M. Diuretics for palliative care patients with fluid overload. Cochrane Database Syst Rev. 2023;4:CD014635.
11. Ekström M, Bajwah S, Bland JM, Currow DC, Hussain J, Johnson MJ. One evidence base; three stories: do opioids relieve chronic breathlessness? Thorax. 2018;73(1):98–100.
12. Aboriginal and Torres Strait Islander Health Performance Framework. AIHW analysis of National Mortality Database. Canberra: AIHW; 2023.
13. RHDAustralia (ARF/RHD Register and Endocarditis). 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.
14. Allen LA, Stevenson LW, Grady KL, et al. Decision making in advanced heart failure: a scientific statement from the American Heart Association. Circulation. 2012;125(15):1928–1952.

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).