Recognising When Death Is Approaching

Last updated 1 Jun 2026 · Palliative care

📋 Key Information Summary

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Recognising deterioration allows timely preparation, communication with patient and family, anticipatory prescribing, and optimal comfort care in the last days of life.
The deteriorating phase (weeks to days before death) is characterised by increasing fatigue, reduced oral intake, declining function, and increased sleep; it is distinct from the terminal phase.
The terminal phase (hours to days) is identified by combinations of semi-coma, Cheyne–Stokes respiration, inability to take oral medications, peripheral shutdown, and agitation or restlessness.
The Australia-modified Karnofsky Performance Status (AKPS) is the standard functional assessment tool used by Australian palliative care services to track decline and guide decision-making.
An AKPS score ≤30 typically indicates the terminal phase; scores of 40–50 suggest significant deterioration with increasing care needs.
Peripheral shutdown — cool extremities, mottling (livedo reticularis), cyanosis of fingers/toes, and prolonged capillary refill — is a reliable physical sign of impending death, often appearing 24–48 hours prior.
Anticipatory prescribing of subcutaneous (SC) syringe drivers containing morphine (pain/dyspnoea), midazolam (agitation/seizures), haloperidol (nausea/delirium), and hyoscine butylbromide (respiratory secretions) is essential for managing the terminal phase.
All non-essential medications (statins, antihypertensives, oral supplements) should be reviewed and ceased as the patient approaches death to avoid unnecessary burden.
Clear, compassionate communication with families about expected signs of dying — changes in breathing pattern, skin colour, consciousness — reduces distress and enables a supported death.
Aboriginal and Torres Strait Islander communities may have culturally specific requirements around Country, sorry business, and the presence of particular family members; early engagement with Indigenous health workers is essential.
Children and young people require age-appropriate explanations; paediatric palliative care services (e.g., Bear Cottage, Very Special Kids) should be engaged early.
Formal recognition of dying — documented in the clinical record with a clear management plan — should occur promptly to ensure appropriate care and medication availability.

Introduction & Australian Epidemiology

Recognising when death is approaching is one of the most important clinical skills in palliative medicine, general practice, and hospital-based care. Timely identification of the dying trajectory allows clinicians to shift the focus of care from disease-directed treatment to comfort, symptom management, and psychosocial support for both the patient and their family or carers.

In Australia, approximately 178,000 people die each year (2022 data), with around 70% of deaths occurring in people aged 65 years and older. Despite the majority of Australians expressing a preference to die at home, approximately 54% of deaths still occur in acute hospitals, 20% in residential aged care facilities (RACFs), and only 16–18% at home. The National Palliative Care Strategy (2018) and Palliative Care Australia's National Palliative Care Standards (5th edition, 2018) emphasise the importance of recognising dying as a discrete clinical event requiring a structured response.

Failure to recognise the terminal phase leads to inappropriate investigations, continued burdensome treatments, delayed anticipatory prescribing, and avoidable distress for patients and families. Conversely, premature labelling of a patient as dying can result in under-treatment of reversible conditions — a careful, systematic approach is required.

This article covers the clinical trajectory from the deteriorating phase through to the terminal phase, the role of functional assessment tools (particularly the AKPS), the physical signs of peripheral shutdown, and practical management including anticipatory prescribing, communication strategies, and care of special populations in the Australian context.

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Reversible causes must be excluded. Before concluding a patient is dying, consider and treat reversible contributors: infection, opioid toxicity, metabolic derangement (hypercalcaemia, renal failure, hepatic encephalopathy), constipation, urinary retention, and medication side effects. A systematic review should occur before a formal recognition of dying.

Deteriorating Phase

The deteriorating phase typically spans weeks to days before death and represents a period of progressive functional decline. Patients and families often describe a "gradual winding down." Recognition of this phase is critical for initiating advance care planning discussions, involving specialist palliative care, commencing anticipatory medications, and ensuring appropriate supports are in place.

Clinical Features of the Deteriorating Phase

Domain	Features	Clinical Significance
Performance status	Declining AKPS (40–50 range); increasing time in bed or chair; requiring assistance with most ADLs	Progressive functional decline is the strongest predictor of approaching death
Oral intake	Decreased appetite and fluid intake; anorexia; early satiety; preference for small, soft meals	Anorexia of advanced disease is expected; forced feeding is not recommended and may cause distress
Consciousness	Increasing drowsiness; sleeping more; periods of confusion or delirium; reduced engagement	Delirium prevalence approaches 80–90% in the last week of life
Weight and nutrition	Cachexia; muscle wasting; loss of subcutaneous fat	Cancer cachexia and disease-related malnutrition are common and largely irreversible
Pain	May increase or become more difficult to assess if communication declines	Regular reassessment is essential; rely on observational pain tools when verbal communication is lost
Psychosocial	Withdrawal from social activities; existential distress; "unfinished business"; reviewing life	Referral to psychosocial support services (social work, chaplaincy, counselling) should be offered
Infections	Recurrent or non-resolving infections; increasing antibiotic courses	Consider whether further antibiotic courses serve the patient's goals of care

Key Actions in the Deteriorating Phase

Recognise and document

Document the recognition of deterioration in the clinical record. Use standardised tools (AKPS, SPICT, SURPISE tool) to support clinical assessment.

Communicate

Initiate or update advance care planning discussions. Ask about preferred place of death. Involve family/carers. Offer referral to specialist palliative care if not already involved.

Review medications

Cease non-essential medications (statins, antihypertensives, oral hypoglycaemics, supplements). Ensure ongoing essential symptom control medications. Commence anticipatory subcutaneous medications where appropriate.

Establish comfort measures

Ensure regular mouth care, skin care, and positioning. Discuss artificial hydration and nutrition — explain that in the dying process, reduced intake is natural and IV fluids may worsen symptoms (fluid overload, secretions).

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SPICT (Supportive & Palliative Care Indicators Tool) is widely used in Australian general practice to identify patients who may benefit from a palliative approach. The "Surprise Question" — "Would you be surprised if this patient died in the next 12 months?" — remains a valuable screening tool endorsed by the RACGP.

Terminal Phase

The terminal phase (also termed the actively dying or last days of life phase) is defined as the period when death is expected within hours to a few days. The Gold Standards Framework (UK, widely adopted in Australia) defines this as the "final hours or days of life." Recognition of the terminal phase is a clinical decision based on the overall trajectory rather than any single sign.

Diagnostic Criteria for the Terminal Phase

A patient should be considered in the terminal phase when two or more of the following are present in the context of an advanced, progressive, life-limiting illness:

Semi-coma or deeply unconscious state (unrousable or only briefly rousable)
Inability to take oral medications or fluids
Cheyne–Stokes breathing pattern (crescendo–decrescendo breathing with apnoeic pauses)
Peripheral shutdown (cool, mottled, cyanotic extremities)
Audible respiratory secretions ("death rattle") unresponsive to positioning or anticholinergic medications
No urine output or minimal output (<100 mL in 12 hours in the absence of obstruction)
Myoclonic jerking
Restlessness or terminal agitation not explained by reversible causes

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Diagnostic caution: Opioid toxicity can closely mimic the terminal phase — consider naloxone trial in uncertain cases. Hypercalcaemia, sepsis, and hepatic encephalopathy may also produce similar features and are potentially reversible. If there is genuine diagnostic uncertainty, a time-limited trial of treatment for reversible causes is appropriate while maintaining comfort.

Recognising the Transition

The transition from the deteriorating phase to the terminal phase is often marked by a noticeable change in consciousness and oral intake. Families may report that the patient "seems different today" or "is no longer really here." Clinicians should document this transition formally, update the care plan to reflect comfort-focused management, and ensure all team members (including after-hours services, RACF staff, and ambulance services where applicable) are aware.

Management Principles in the Terminal Phase

Comfort Measures

Basic Symptom Control

Regular mouth care (sodium bicarbonate mouth wash every 1–2 hours). Skin care and repositioning every 2–4 hours. Gentle suctioning of oropharyngeal secretions only if distressing to family.

Setting: Any — home, RACF, hospital

Anticipatory Medications

SC Syringe Driver

Commence or continue continuous subcutaneous infusion (CSCI) via syringe driver: morphine (pain/dyspnoea), midazolam (agitation/anxiety), haloperidol (nausea/delirium), hyoscine butylbromide (secretions). PRN SC injections available for breakthrough symptoms.

Setting: All settings with appropriate training

Cease Non-Essential Interventions

De-escalation of Care

Stop all non-essential medications, blood tests, vital sign monitoring, and IV access unless required for symptom control. Cease artificial nutrition and hydration unless specifically requested by patient/family after informed discussion. Redirect care to comfort only.

Setting: Documented in clinical record

Managing Specific Terminal Symptoms

Symptom	First-Line Management	Second-Line / Refractory
Pain	Morphine SC via syringe driver (if opioid-naïve: 10–30 mg/24 h CSCI) with PRN doses of 2.5–5 mg SC q4h	Fentanyl SC, methadone SC, ketamine SC (specialist input). Consider adjuvants: dexamethasone for bone pain, gabapentin for neuropathic pain if able to administer.
Agitation / Delirium	Midazolam SC 2.5–10 mg/24 h CSCI; haloperidol SC 2.5–5 mg/24 h CSCI	Levomepromazine SC 12.5–50 mg/24 h CSCI; clonazepam SC 0.5–1 mg/24 h CSCI; phenobarbitone (specialist use).
Respiratory Secretions	Hyoscine butylbromide SC 60–120 mg/24 h CSCI; repositioning (lateral/recumbent); gentle oropharyngeal suction PRN	Glycopyrrolate SC 0.2–0.4 mg q4h PRN. Note: hyoscine hydrobromide (0.4 mg SC q4h) causes more sedation — useful if concurrent agitation.
Dyspnoea	Morphine SC 2.5–5 mg q4h PRN or CSCI equivalent; fan / air movement; positioning upright if tolerated	Midazolam SC if associated anxiety. Consider bronchodilators only if known reversible airways disease and not in active dying.
Nausea / Vomiting	Haloperidol SC 0.5–2 mg q8h or CSCI; metoclopramide SC 10 mg TDS if gastric stasis suspected	Levomepromazine SC 6.25–12.5 mg q8h; cyclizine SC 50 mg q8h (may precipitate in syringe driver with other drugs).
Seizures	Midazolam SC 10–20 mg/24 h CSCI; PRN midazolam 5–10 mg SC q4h for breakthrough	Clonazepam SC; phenobarbitone SC (specialist advice). Consider prior anticonvulsant history.

Australia-Modified Karnofsky Performance Status (AKPS)

The Australia-modified Karnofsky Performance Status (AKPS) is the standard functional assessment tool used by Australian palliative care services. It was developed by Abernethy et al. (2005) at Flinders University, Adelaide, as a modification of the original Karnofsky Performance Status (KPS) to better reflect the ambulatory and self-care domains relevant to palliative care populations. The AKPS is endorsed by Palliative Care Australia and used across all state and territory palliative care services for clinical assessment, research, and service planning.

AKPS Scale

AKPS Score	Descriptor	Clinical Correlate	Phase
100	Normal; no complaints; no evidence of disease	Fully active, able to carry on all pre-disease activities without restriction	Stable / stable with some needs
90	Able to carry on normal activity; minor signs/symptoms	Active; minor restrictions	Stable
80	Normal activity with effort; some signs/symptoms	Requires occasional assistance but able to care for most needs	Stable
70	Cares for self; unable to carry on normal activity or do active work	Requires occasional assistance; unable to work	Stable with some needs
60	Requires occasional assistance; able to care for most needs	Needs help with some ADLs	Unstable
50	Requires considerable assistance and frequent medical care	Disabled; requires substantial assistance	Unstable
40	Disabled; requires special care and assistance	Mostly bed-bound or chair-bound	Deteriorating
30	Severely disabled; hospitalisation indicated (death not imminent)	Bed-bound; needs nursing care for most needs	Deteriorating / Terminal
20	Very sick; hospitalisation necessary; active supportive treatment needed	Bed-bound; needs total care	Terminal
10	Moribund; fatal processes progressing rapidly	Deeply unconscious; dying	Terminal
0	Dead	—	—

Clinical Application of the AKPS

Serial measurement: AKPS should be assessed at each clinical contact and documented in the clinical record. A declining AKPS over successive assessments (e.g., 60 → 40 → 20 over 2–4 weeks) is highly predictive of approaching death.
Threshold for palliative care referral: An AKPS ≤50 in a patient with a progressive life-limiting illness should prompt specialist palliative care referral if not already involved.
Terminal phase indicator: An AKPS ≤30 combined with other clinical features (reduced consciousness, inability to swallow, peripheral shutdown) strongly supports recognition of the terminal phase.
Communication tool: AKPS provides a standardised language for discussing functional status with other clinicians, families, and multidisciplinary teams across primary, secondary, and tertiary care.
Research and benchmarking: AKPS is collected by most Australian palliative care services for outcomes measurement and is used in the Palliative Care Outcomes Collaboration (PCOC) national dataset.

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PCOC (Palliative Care Outcomes Collaboration) is a national Australian programme based at the University of Wollongong that uses AKPS alongside other outcome measures (Symptom Assessment Scale, POS, RUG-ADL) to benchmark and improve palliative care outcomes. All Australian palliative care services are encouraged to participate.

Peripheral Shutdown

Peripheral shutdown refers to the clinical signs resulting from the body's cardiovascular response to dying — the redistribution of blood flow from the periphery to vital organs (brain, heart, lungs) as cardiac output falls and systemic vascular resistance increases. It is one of the most reliable physical signs of impending death, typically appearing 12–48 hours before death, though the timeline is variable.

Clinical Signs of Peripheral Shutdown

Physical Signs

Cool peripheries: Hands and feet become cool to touch, progressing proximally over hours to the knees/elbows
Mottling (livedo reticularis): Irregular, patchy, blue-purple discolouration of the skin, typically beginning on the knees and spreading
Peripheral cyanosis: Blue-grey discolouration of nail beds, fingertips, and toes
Prolonged capillary refill time: >3 seconds (compared to normal <2 seconds)
Weakened peripheral pulse: Radial and dorsalis pedis pulses become difficult to palpate
Decreased blood pressure: Systolic BP <90 mmHg may be present, but measurement is not recommended if the focus is comfort care

Pathophysiology

Cardiac output falls as myocardial function declines
Sympathetic vasoconstriction redirects blood to central organs
Peripheral vasodilation occurs paradoxically in terminal shock
Catecholamine surge may cause transient tachycardia followed by bradycardia
Decreased circulating volume due to reduced oral intake and third-spacing
The "centralisation" pattern is mediated by baroreceptor and chemoreceptor reflexes

Timeline of Peripheral Changes

48–72 hours

Slight coolness to the tips of fingers and toes. Mild pallor of nail beds. Decreased skin turgor. May be difficult to distinguish from general dehydration.

12–24 hours

Coolness extending to wrists and ankles. Mottling appearing over knees and elbows. Capillary refill time 3–4 seconds. Peripheral cyanosis visible in nail beds.

6–12 hours

Mottling extending proximally. Extremities noticeably cold. Cyanosis more pronounced. Peripheral pulses difficult to palpate. Often accompanied by Cheyne–Stokes respiration and reduced consciousness.

0–6 hours

Mottling extending to trunk. Profound peripheral cyanosis. Central cyanosis (lips, tongue) may develop. Radial pulse absent or very weak. Terminal phase clearly established.

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Communication with families: Peripheral shutdown is often the most visible and distressing sign for families. Explain proactively that the skin colour changes are a normal part of the dying process, that the patient is not in pain from the coolness (though they may experience pain from other causes), and that warm blankets can provide comfort to the patient and family without changing the underlying trajectory. Avoid placing warm compresses on mottled skin, which may cause thermal injury to poorly perfused tissue.

Differentiating Peripheral Shutdown from Other Causes

Condition	Features Distinguishing from Peripheral Shutdown
Sepsis / Distributive shock	Warm peripheries initially; fever; rigors; responding to fluids and antibiotics; in a dying patient, sepsis and peripheral shutdown may coexist
Dehydration	Dry mucous membranes; reduced skin turgor; concentrated urine — peripheral changes are less pronounced; responds to hydration if clinically appropriate
Heart failure exacerbation	Peripheral oedema; elevated JVP; pulmonary crepitations; may improve with diuretics — in the dying patient, heart failure may contribute to peripheral shutdown
Peripheral vascular disease	Chronic cool extremities; absent pulses; trophic changes; intermittent claudication history; changes are chronic rather than acute

Clinical Presentation & Recognition Criteria

The recognition of dying is a clinical diagnosis based on the synthesis of multiple clinical features rather than any single test or sign. Several validated frameworks support this assessment in the Australian setting.

Supportive & Palliative Care Indicators Tool (SPICT)

The SPICT (University of Edinburgh, widely adopted in Australian general practice and RACFs) identifies patients with deteriorating health due to one or more advanced conditions for a palliative care approach. It includes general indicators (e.g., unplanned hospital admissions, weight loss, dependence on others for self-care) and disease-specific indicators.

Clinical Features Suggesting the Last Days of Life

Early Deterioration

Weeks Before Death

Declining function (AKPS 40–50), reduced oral intake, increasing fatigue, weight loss, increasing pain, recurrent infections, frequent ED presentations, reduced engagement with activities.

Action: Goals-of-care discussion, palliative care referral, medication review

Late Deterioration

Days Before Death

AKPS 20–30, semi-coma, inability to swallow, reduced/absent urine output, Cheyne–Stokes respiration, terminal restlessness, respiratory secretions, peripheral shutdown beginning.

Action: Formal recognition of dying, comfort care plan, anticipatory medications, family communication

Terminal Phase

Hours Before Death

AKPS 0–10, deep unconsciousness, no oral intake, no urine output, Cheyne–Stokes or apnoeic breathing, central and peripheral cyanosis, widespread mottling, death rattle, myoclonic jerks.

Action: Continue comfort measures, ongoing family support, prepare family for final moments

Investigations

In the context of recognising when death is approaching, the role of investigations is limited. The primary purpose of any investigation should be to exclude reversible causes of deterioration before committing to a comfort-only care plan. Once the terminal phase is recognised, routine investigations should be ceased.

Essential

Clinical assessment

Comprehensive clinical examination including vital signs (if appropriate to goals of care), neurological assessment, hydration status, pain assessment (using Abbey Pain Scale or similar if non-verbal), AKPS scoring

Available

Biochemistry (if reversible causes suspected)

Serum calcium (hypercalcaemia), renal function (uraemia), liver function (hepatic encephalopathy), glucose (hypoglycaemia). Medicare MBS Item 66500/66503. Only if results would change management.

Available

Blood cultures / CRP

If sepsis is suspected as a reversible contributor and antibiotic treatment aligns with goals of care. Medicare MBS Item 69314 (CRP).

Referral

Urinalysis / Urine output measurement

Urinary retention is a reversible cause of delirium and agitation. Point-of-care urinalysis and bladder scan should be performed in any agitated patient before concluding terminal phase.

Referral

Imaging (CT head, etc.)

Not recommended in the terminal phase. May be considered in the deteriorating phase if intracranial pathology (e.g., raised ICP from brain metastasis) would change symptom management.

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Do not investigate without purpose: Routine blood tests, chest X-rays, and other investigations should not be performed on patients recognised as dying unless there is a specific clinical question that would change management. Invasive investigations (arterial blood gas, lumbar puncture) are contraindicated in the terminal phase. Venepuncture and cannulation may be distressing and should be avoided if possible.

Anticipatory Prescribing

Anticipatory prescribing — the provision of injectable medications for breakthrough or escalating symptoms before they occur — is a cornerstone of quality end-of-life care. All patients recognised as deteriorating should have anticipatory medications prescribed and available, even if not yet in the terminal phase.

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Morphine

Ordine® · Kapanol® · Ms Contin® · Opioid analgesic

Indication Pain, dyspnoea

Adult dose (opioid-naïve) SC 2.5–5 mg q4h PRN; CSCI 10–30 mg/24 h

Adult dose (opioid-tolerant) Convert from current oral opioid using equianalgesic ratios; CSCI = total 24-hour oral dose ÷ 2 to 3

Route Subcutaneous (SC) injection or continuous SC infusion (CSCI) via syringe driver

Renal adjustment Use with caution if eGFR <30 mL/min; active metabolites accumulate; consider dose reduction or switch to fentanyl

PBS status ✔ PBS General Benefit

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Midazolam

Hypnovel® · Benzodiazepine

Indication Agitation, anxiety, seizures, restlessness

Adult dose (CSCI) 10–30 mg/24 h; titrate in increments of 5–10 mg/24 h

Adult dose (PRN SC) 2.5–5 mg SC q2h PRN for breakthrough agitation

Route SC injection or CSCI; also available as buccal (oromucosal) and intranasal

Renal / Hepatic Use lower doses in severe hepatic impairment; no renal adjustment required

PBS status ✔ PBS General Benefit

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Haloperidol

Serenace® · Typical antipsychotic

Indication Nausea/vomiting, delirium, agitation (especially with psychotic features)

Adult dose (CSCI) 2.5–10 mg/24 h for nausea/delirium

Adult dose (PRN SC) 1–2.5 mg SC q8h PRN

Route SC injection or CSCI

Renal / Hepatic No dose adjustment required in renal impairment; use with caution in hepatic impairment

PBS status ✔ PBS General Benefit

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Hyoscine Butylbromide

Buscopan® · Anticholinergic / antispasmodic

Indication Respiratory secretions ("death rattle"), bowel colic

Adult dose (CSCI) 60–120 mg/24 h

Adult dose (PRN SC) 20 mg SC q4h PRN

Route SC injection or CSCI

Renal / Hepatic No dose adjustment; avoid in severe hepatic impairment

PBS status ✔ PBS General Benefit

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Levomepromazine

Nozinan® · Phenothiazine antipsychotic

Indication Intractable nausea, refractory agitation, delirium (second-line)

Adult dose (CSCI) 12.5–50 mg/24 h; start low (12.5 mg/24 h) due to sedation

Adult dose (PRN SC) 6.25–12.5 mg SC q8h PRN

Route SC injection or CSCI

Renal / Hepatic Use lower doses in hepatic impairment; no renal adjustment

PBS status ✔ PBS General Benefit

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Fentanyl

Durogesic® / Sublimaze® · Opioid analgesic

Indication Pain/dyspnoea — preferred in renal impairment

Adult dose (CSCI) 25–100 mcg/24 h (opioid-naïve); adjust from prior opioid regimen

Adult dose (PRN SC) 25–50 mcg SC q2h PRN

Route SC injection or CSCI; transdermal patches NOT recommended in terminal phase (erratic absorption, slow onset/offset)

Renal adjustment Preferred opioid in renal impairment (eGFR <30 mL/min) — no active metabolites accumulate

PBS status ✔ PBS General Benefit

Medications to Cease in the Deteriorating/Terminal Phase

Medication Category	Examples	Rationale for Cessation
Cardiovascular	Statins, antihypertensives, antiarrhythmics, anticoagulants (consider risk–benefit), antihypertensives	No benefit in terminal phase; may cause hypotension; swallowing difficulties. Anticoagulants: discuss risk of thromboembolism vs. bleeding risk — generally cease warfarin; DOAC cessation is recommended.
Diabetes medications	Oral hypoglycaemics (metformin, sulfonylureas, SGLT2 inhibitors), insulin (reduce/cease)	Hypoglycaemia risk with reduced intake. Cease metformin (lactic acidosis risk). Reduce or cease insulin; if continuing, monitor BSLs less frequently (comfort-focused).
Respiratory	Inhaled bronchodilators, inhaled corticosteroids, mucolytics	Inability to use inhalers; distressing; consider SC salbutamol only if bronchospasm is causing distress (specialist use).
Supplements	Vitamins, calcium, iron, potassium	No benefit; unable to swallow tablets; IV supplements unnecessary in terminal phase.
Gastrointestinal	PPIs, H2-receptor antagonists (oral), laxatives (oral), oral phosphate binders	Replace with SC alternatives if needed (e.g., ranitidine SC — note: currently unavailable in Australia; omeprazole via NG/PEG if present). Continue lactulose/enemas only if constipation is causing distress.
Antibiotics	Prophylactic antibiotics, long-term suppressive antibiotics	Infections are common in the dying; antibiotics may prolong dying without improving comfort. Discuss with patient/family. Therapeutic antibiotics may continue if infection is causing distressing symptoms (e.g., fevers, pain).

Monitoring

Monitoring in the context of a patient approaching death should be symptom-focused rather than disease-focused. The purpose of monitoring shifts from tracking disease parameters (blood tests, vital signs, weight) to assessing and managing symptoms (pain, agitation, secretions, dyspnoea) and supporting the patient and family.

Monitoring Approach by Phase

Deteriorating Phase

Functional & Symptom Monitoring

AKPS at each clinical review (at least weekly). Regular pain assessment (NRS or Abbey Pain Scale). Review of medications. Monitoring oral intake. Assessment of delirium (CAM). Skin integrity assessment. Family/carer wellbeing check.

Frequency: Every clinical contact; minimum weekly in community

Terminal Phase

Comfort Monitoring

Symptom review at each nursing visit (pain, agitation, secretions, dyspnoea, nausea). Assessment of syringe driver site. Review of PRN medication usage. Family support. No routine vital signs, blood tests, or weight monitoring unless specifically indicated.

Frequency: Minimum BD nursing visits in community; continuous in hospital/RACF

Post-Recognition

Ongoing Review

Review anticipatory medication doses every 24 hours (or sooner if breakthrough symptoms). Assess for new symptoms. Continue mouth care and skin care. Document changes in clinical record. After-hours plan in place. Bereavement support initiated for family.

Frequency: Ongoing until death and beyond

Observational Pain Tools for Non-Verbal Patients

When a patient can no longer self-report pain (due to reduced consciousness), use an observational pain assessment tool:

Abbey Pain Scale — recommended by Australian aged care and palliative care guidelines; assesses vocalisation, facial expression, change in body language, behavioural change, physiological change, and body condition. Score 0–18; ≥8 suggests moderate-to-severe pain.
PAINAD (Pain Assessment in Advanced Dementia) — used in RACFs; assesses breathing, negative vocalisation, facial expression, body language, and consolability. Score 0–10.
FLACC (Face, Legs, Activity, Cry, Consolability) — commonly used in paediatric settings. Score 0–10.

Special Populations

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Paediatrics

Recognition of dying in children Paediatric palliative care has unique challenges — many children have rare, non-malignant conditions (neurodegenerative disorders, congenital anomalies). Deterioration may be gradual over months to years with acute crises. AKPS can be adapted for paediatric use but the Paediatric Palliative Performance Scale (PaPPS) is preferred.

Symptom management Weight-based dosing is essential. Morphine: 0.1–0.2 mg/kg SC q4h PRN; CSCI 0.2–0.4 mg/kg/24 h. Midazolam: 0.05–0.1 mg/kg SC q2h PRN; CSCI 0.2–0.5 mg/kg/24 h. Engage paediatric palliative care services early (Bear Cottage, Sydney; Very Special Kids, Melbourne; Hummingbird House, Brisbane).

Family support Siblings require age-appropriate explanations and support. Bereavement services should be offered proactively. Child life therapists and family support workers are integral. Cultural and spiritual needs of the family should be explored.

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Elderly / Residential Aged Care

Frailty and multimorbidity The deteriorating phase may be prolonged and difficult to distinguish from the normal trajectory of frailty. The Clinical Frailty Scale (CFS) and AKPS together support recognition. Residents with AKPS ≤40 should have a palliative care plan in place.

RACF considerations Staff training in recognising dying is essential — many RACF staff lack confidence in this area. After-hours access to injectable medications (syringe drivers, SC injections) must be ensured. Telehealth palliative care consultations can support RACF staff in regional/remote areas.

Medication adjustments Reduced renal and hepatic function is common; start anticipatory medications at lower doses and titrate. Morphine: consider fentanyl as first-line if eGFR <30 mL/min. Avoid hyoscine hydrobromide (confusion risk); prefer hyoscine butylbromide. Polypharmacy review is critical.

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Renal Impairment

Opioid selection Fentanyl is preferred over morphine in patients with eGFR <30 mL/min as morphine's active metabolites (M6G, M3G) accumulate and cause toxicity (myoclonus, prolonged sedation, respiratory depression). Hydromorphone is an alternative but also requires dose reduction.

Dialysis patients If a patient on haemodialysis is approaching death, the decision to cease dialysis should be made with the patient (if able), family, and nephrology team. After dialysis cessation, death typically occurs within 7–14 days. Anticipatory medications should be prescribed and available.

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Hepatic Impairment

Drug metabolism Reduced hepatic clearance affects morphine, midazolam, haloperidol, and levomepromazine. Start at lower doses and titrate carefully. Paracetamol should be limited to ≤2 g/day. Codeine and tramadol should be avoided (erratic metabolism).

Ascites and encephalopathy Ascites may cause dyspnoea and discomfort — large-volume paracentesis may be considered if it aligns with goals. Hepatic encephalopathy can mimic terminal confusion — lactulose and rifaximin may provide reversible improvement if the patient is in the deteriorating (not terminal) phase.

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Immunocompromised

HIV/AIDS In the era of effective antiretroviral therapy, HIV-related deaths have significantly decreased in Australia. However, late diagnosis, treatment non-adherence, and comorbidities may lead to advanced HIV disease. Cease antiretrovirals in the terminal phase only after discussion with the patient (if able) and HIV specialist. Opportunistic infection prophylaxis (cotrimoxazole) should also be ceased.

Transplant recipients Immunosuppressive medications (tacrolimus, mycophenolate, cyclosporine) should be ceased in the terminal phase. Corticosteroids may need to be continued briefly to prevent adrenal crisis if the patient has been on long-term steroids. Discuss with transplant team.

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Pregnancy

End-of-life care in pregnancy Extremely rare but devastating. Multidisciplinary approach involving obstetrics, neonatology, palliative care, and ethics is essential. If the fetus is viable (>23 weeks), delivery may be considered — caesarean section for maternal comfort is not generally recommended. Opioids (morphine, fentanyl) are safe for maternal comfort. Midazolam is generally avoided in the first trimester but can be used in the terminal phase when the priority is maternal comfort.

Aboriginal and Torres Strait Islander Health Considerations

Aboriginal and Torres Strait Islander Health

Cultural Understanding of Death

Aboriginal and Torres Strait Islander peoples have diverse cultural beliefs about death and dying across the hundreds of distinct language groups and nations. Many communities hold the belief that a person's spirit returns to Country after death. Saying the name of a deceased person may be culturally inappropriate in some communities (aversion practices). The concept of "good death" may differ significantly from Western palliative care frameworks. Early and culturally sensitive engagement with the patient, family, and community Elders is essential to understand specific cultural requirements.

Sorry Business

"Sorry business" refers to mourning and funeral practices that are of profound cultural significance. It may involve large numbers of family and community members gathering, extended periods of mourning, smoking ceremonies, and other cultural practices. Healthcare services should accommodate sorry business by allowing extended family visitation, supporting culturally specific practices within the facility where possible, and understanding that sorry business may take precedence over other commitments including medical appointments.

Country and Place of Death

Dying on Country (in one's traditional lands) is of immense cultural importance for many Aboriginal peoples. Returning to Country for end-of-life care is a common and important wish. This may require complex coordination involving patient transport (including aeromedical retrieval via RFDS), palliative care in remote communities, and support for family members. The Patient Assisted Travel Scheme (PATS) and state/territory equivalents may assist with transport costs. Health services should proactively explore the patient's wishes regarding Country early in the deterioration trajectory.

Aboriginal Health Workers and Liaison Officers

Aboriginal Health Workers (AHWs) and Aboriginal Health Practitioners (AHPs) are essential to culturally safe end-of-life care. They provide cultural brokerage, communication support, and connection to community. Aboriginal Hospital Liaison Officers (AHLOs) in hospital settings facilitate communication between clinical teams, patients, and families. All end-of-life care discussions should include the offer of AHW/AHP involvement.

Barriers to Palliative Care Access

Aboriginal and Torres Strait Islander peoples experience significant barriers to palliative care: geographic remoteness (34% of Aboriginal Australians live in remote or very remote areas vs. 2% of non-Indigenous Australians); distrust of mainstream health services due to historical and ongoing experiences of racism; lack of culturally appropriate services; communication barriers (English may not be a first language); limited availability of specialist palliative care in rural and remote areas. The Closing the Gap initiative and the National Aboriginal and Torres Strait Islander Palliative Care Strategy aim to address these disparities.

Stigma and Language

The word "cancer" and direct discussion of death may be culturally inappropriate or frightening in some communities. Use culturally sensitive language and allow the patient and family to lead the conversation. Some communities prefer indirect language or storytelling approaches to discuss prognosis. The "Dying to Talk" initiative by Palliative Care Australia has developed culturally appropriate resources for Aboriginal and Torres Strait Islander communities.

Bereavement Support

Grief and loss are experienced collectively in many Aboriginal communities, and the impact of death extends beyond the immediate family to the broader community, including through "granny grief" (the central role of grandmothers in many Aboriginal families). Bereavement support should be culturally informed and community-based, engaging local Aboriginal Community Controlled Health Organisations (ACCHOs), social and emotional wellbeing services, and culturally specific grief counselling programs.

📚 References

1. Palliative Care Australia. National Palliative Care Standards. 5th ed. Canberra: Palliative Care Australia; 2018.
2. Abernethy AP, Shelby-James T, Fazekas BS, Woods D, Currow DC. The Australia-modified Karnofsky Performance Status (AKPS) scale: a brief tool for assessing functional status in a palliative care setting. Palliative Medicine. 2005;19(3):217–226.
3. Palliative Care Outcomes Collaboration (PCOC). National Benchmarking Report 2022. Wollongong: University of Wollongong; 2023.
4. Highet G, Crawford D, Murray SA, Boyd K. Development and evaluation of the Supportive and Palliative Care Indicators Tool (SPICT): a mixed-methods study. BMJ Supportive & Palliative Care. 2014;4(3):285–290.
5. Ellershaw J, Ward C. Care of the dying patient: the last hours or days of life. BMJ. 2003;326(7379):30–34.
6. Hui D, Dev R, Bruera E. The last days of life: symptom burden and clinical decisions. CA: A Cancer Journal for Clinicians. 2015;65(3):197–215.
7. Twycross R, Wilcock A. Palliative Care Formulary. 7th ed. Nottingham: Palliativedrugs.com Ltd; 2020.
8. Abbey J, Piller N, De Bellis A, et al. The Abbey Pain Scale: a 1-minute numerical indicator for people with end-stage dementia. International Journal of Palliative Nursing. 2004;10(1):6–13.
9. Gonçalves F, Almeida A, Antunes C. A cross-sectional survey of the symptom prevalence of patients with advanced cancer followed by a palliative care team. Journal of Palliative Medicine. 2009;12(9):801–805.
10. Morita T, Tsuneto S, Shima Y. Definition of sedation for symptom relief: a systematic literature review and a proposal of operational criteria. Journal of Pain and Symptom Management. 2002;24(4):447–453.
11. Australian Institute of Health and Welfare (AIHW). Palliative care services in Australia. Cat. no. HWI 332. Canberra: AIHW; 2023.
12. Cancer Council Australia. Optimal Care Pathway for People with Advanced Cancer. Melbourne: Cancer Council Australia; 2020.
13. CareSearch. Recognising Dying. Adelaide: Flinders University; 2023. Available from: www.caresearch.com.au
14. Shahid S, Bessarab D, van den Berg N, et al. Cultural burden and its impact on Aboriginal palliative care service delivery in Western Australia. BMJ Supportive & Palliative Care. 2016;6(3):384–389.
15. Royal Australian College of General Practitioners (RACGP). Palliative Care in General Practice: A guide for practitioners. Melbourne: RACGP; 2023.
16. National Health and Medical Research Council (NHMRC). Guidelines for a Palliative Approach in Residential Aged Care. Canberra: NHMRC; 2006.

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).