Altered Breathing Near Death

Last updated 1 Jun 2026 · Palliative care

📋 Key Information Summary

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Breathing patterns commonly change in the final hours to days of life and are a normal part of the dying process, not necessarily a sign of suffering.
Cheyne–Stokes respiration is characterised by alternating cycles of deep and shallow breathing with apnoeic pauses; it is the most common altered pattern in the last 24–48 hours.
Agonal breaths (gasping, irregular, often noisy respirations) may occur in the final minutes to hours and are reflexive, not indicative of conscious distress.
Apnoea (cessation of breathing) heralds death; periods of apnoea may precede terminal apnoea by minutes to hours.
Altered breathing near death is usually not distressing to the patient, even if it appears alarming to onlookers.
Explanation and reassurance to family and carers is the single most important intervention; proactively preparing families reduces anxiety and grief complications.
Pharmacological treatment is indicated only when there is objective evidence of respiratory distress (accessory muscle use, tachypnoea, visible dyspnoea, restlessness).
Low-dose subcutaneous morphine (2.5–5 mg SC 4-hourly PRN) or equivalent opioid remains first-line for refractory dyspnoea at end of life.
Midazolam (2.5–5 mg SC PRN or continuous infusion 0.5–1 mg/hr) is second-line for anxiety-related breathlessness or terminal restlessness unresponsive to opioids alone.
Routine use of supplemental oxygen is not recommended in the absence of documented hypoxaemia causing distress; a gentle fan directed at the face can be equally effective.
Suctioning of upper-airway secretions ("death rattle") should be avoided; anticholinergics such as glycopyrrolate (200 mcg SC 4-hourly) or hyoscine butylbromide (20 mg SC 4-hourly) are preferred pharmacologically.
ATSI communities may have specific cultural practices around dying and breathing; culturally safe, family-centred communication is essential.
Multidisciplinary palliative care team involvement (specialist palliative care, GP, nursing) should be sought early, particularly in regional and remote settings where access is limited.

Introduction & Australian Epidemiology

Changes in breathing pattern are among the most recognisable and often most distressing features of the dying process for families and health professionals alike. As the body's metabolic demands decline and central nervous system function deteriorates in the final hours to days of life, respiratory drive becomes increasingly irregular. These changes—Cheyne–Stokes respiration, agonal breathing, and periods of apnoea—are physiological consequences of dying rather than treatable pathology.

Understanding and correctly interpreting these patterns is essential for all clinicians involved in end-of-life care. Misidentification of normal terminal breathing changes as an acute emergency can lead to inappropriate escalation of care, distressing interventions, and transfer to hospital against the patient's wishes. Conversely, failure to recognise genuine respiratory distress may leave a dying patient suffering unnecessarily.

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Clinical pearl: The presence of an abnormal breathing pattern does not equate to dyspnoea. Dyspnoea is a subjective experience; breathing pattern changes near death are usually not perceived as distressing by the patient, even when they appear alarming to observers.

Australian Context

Approximately 170,000 Australians die each year (Australian Bureau of Statistics, 2023), with an estimated 60–70% of deaths occurring in hospitals or residential aged-care facilities. The Australian Government's National Palliative Care Strategy (2018) emphasises that all Australians should have access to high-quality palliative care regardless of setting, yet significant disparities exist, particularly for Aboriginal and Torres Strait Islander peoples, those in rural and remote areas, and culturally and linguistically diverse communities.

Cheyne–Stokes respiration has been documented in 25–50% of patients in the last 48 hours of life in hospice and palliative care settings. Agonal breathing occurs in an estimated 20–40% of patients in the final hours. These figures are consistent with international data but Australian-specific prevalence studies are limited. The Palliative Care Outcomes Collaboration (PCOC) collects national data on symptom burden at end of life, including respiratory symptoms, which consistently rank among the most prevalent domains of distress.

The majority of Australian palliative care is delivered by general practitioners and community nursing services, with specialist palliative care involvement in approximately 30–40% of deaths. Ensuring that all clinicians—regardless of setting—can recognise, explain, and appropriately manage altered breathing near death is a core competency of end-of-life care.

Cheyne–Stokes Respiration

Cheyne–Stokes respiration (CSR) is the most commonly observed altered breathing pattern in the dying patient. It is characterised by a cyclical pattern of progressively deeper and more rapid respirations (crescendo), followed by progressively shallower and slower respirations (decrescendo), interspersed with periods of apnoea lasting 5–30 seconds.

Pathophysiology

In the context of dying, CSR results from loss of cortical modulation of the brainstem respiratory centres combined with changes in arterial CO₂ sensitivity. As the cerebral cortex and higher centres fail, the respiratory centre in the medulla oblongata oscillates around its CO₂ set-point. The delay in chemoreceptor feedback (circulation time is prolonged due to declining cardiac output) creates a characteristic "hunting" pattern. In the dying patient, this reflects central nervous system shutdown rather than cardiac failure per se, distinguishing it from CSR seen in chronic heart failure or stroke rehabilitation.

Recognition

Regularly alternating cycles of deep/rapid breathing and shallow/slow breathing
Apnoeic pauses of 5–30 seconds between cycles
Cycle length typically 45–90 seconds
Patient usually appears peaceful during apnoeic phases
May be accompanied by reduced conscious level (drowsiness, semi-coma)

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Key message: CSR near death is not a sign of respiratory distress. Most patients with CSR in the terminal phase are deeply unconscious or semi-conscious and do not experience dyspnoea. Pharmacological treatment of the breathing pattern itself is not indicated.

Management

The primary management of CSR near death is reassurance and education of family and carers. Explain that:

The breathing pattern is a normal part of the dying process
The patient is very unlikely to be aware of the irregular breathing
The apnoeic pauses do not mean the patient is "struggling" or "holding their breath"
No treatment is needed for the pattern itself
The pattern will continue and periods of apnoea will lengthen as death approaches

If objective signs of respiratory distress coexist (accessory muscle use, nasal flaring, paradoxical abdominal movement, tachypnoea > 25/min, or visible distress), treat the dyspnoea as outlined in the Empirical Therapy section below—not the CSR pattern itself.

Agonal Breaths

Agonal breathing refers to irregular, gasping respiratory efforts that may occur in the final minutes to hours before death. The term "agonal" derives from the Greek agon (struggle), but the name is misleading—these are reflexive brainstem movements and do not indicate conscious struggle or suffering.

Characteristics

Irregular, deep gasping inspirations, often with long pauses between efforts
May be accompanied by gurgling or rattling sounds due to upper-airway secretions
Involuntary spasmodic movements of the jaw, chest wall, or diaphragm
Typically occurs when the patient is deeply unconscious or in a comatose state
Duration is variable—minutes to occasionally several hours

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Do not confuse agonal breathing with effective ventilation. Agonal breaths are poor-quality, reflexive respiratory efforts. They do not provide adequate gas exchange. The presence of agonal breathing confirms that the patient is in the active dying phase and death is imminent.

Management

Agonal breathing does not require treatment with oxygen, ventilation, or respiratory stimulants. The management is entirely supportive and communicative:

Reassure family that the patient is not in pain or distress—these are reflex movements
Position the patient semi-prone or on their side (recovery position) to minimise secretion pooling and aspiration risk
Avoid suctioning unless there is clear evidence of airway obstruction causing distress to a semi-conscious patient
If the patient shows signs of distress, treat with subcutaneous midazolam as per terminal agitation guidelines
Provide quiet, calm presence; allow family to be present, hold the patient's hand, speak softly
Notify the medical team and ensure all comfort measures are in place

Gurgling and Secretions ("Death Rattle")

Audible upper-airway secretions occur in 25–92% of dying patients and, while distressing for families, are not distressing to the unconscious patient. First-line non-pharmacological measures include gentle repositioning (lateral or semi-prone) and explanation to family. Pharmacological management with anticholinergic agents may reduce secretions:

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Glycopyrrolate

Sialanar® · Anticholinergic (anti-secretory)

Adult dose 200 mcg SC 4-hourly PRN (range 200–400 mcg SC); may use continuous SC infusion 600–1200 mcg/24 hr

Paediatric dose 4–10 mcg/kg SC 4-hourly PRN (palliative care specialist guidance recommended)

Key notes Does not cross the blood–brain barrier significantly—less CNS effects than hyoscine hydrobromide. Preferred in palliative care for secretions.

Renal adjustment Use with caution; reduce dose if eGFR < 30 mL/min

PBS status ⚠ PBS Authority Required

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Hyoscine Butylbromide

Buscopan® · Anticholinergic (anti-secretory)

Adult dose 20 mg SC 4-hourly PRN; may increase to 20–40 mg SC 4-hourly or continuous infusion 60–120 mg/24 hr

Key notes Quaternary ammonium compound—minimal CNS penetration. First-line in many Australian palliative care units. Also used for bowel colic.

Renal adjustment No specific adjustment; use with caution in severe renal impairment

PBS status ✔ PBS General Benefit

Apnoea

Apnoea—cessation of breathing—may occur transiently during Cheyne–Stokes cycles, as part of agonal breathing patterns, or as the final event preceding death (terminal apnoea). In the dying patient, apnoea is expected and inevitable; it is not a pathological event requiring resuscitation unless the patient has expressed a clear wish for active intervention (which is uncommon in the context of established terminal care).

Types of Apnoea Near Death

Type	Context	Duration	Significance
CSR-related apnoea	Within Cheyne–Stokes cycles	5–30 seconds per cycle	Normal variant; expected to lengthen over time
Intermittent apnoea	Between periods of irregular breathing	30 seconds–several minutes	Indicates progression; death may be minutes to hours away
Terminal apnoea	Final cessation of all respiratory effort	Permanent	Death is imminent (minutes); cardiac activity may persist briefly

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Resuscitation status must be confirmed and documented before terminal apnoea occurs. In the absence of a documented not-for-resuscitation (NFR) or Medical Orders for Scope of Treatment (MOST) plan, emergency protocols may be inadvertently triggered. Ensure advance care planning documentation is completed, signed, and accessible at the bedside.

Australian Advance Care Planning

Australian jurisdictions have varying legislative frameworks for advance care directives (ACDs):

Victoria: Advance Care Directive under the Medical Treatment Planning and Decisions Act 2016; binding on health practitioners
New South Wales: Advance Care Directive under common law; MOST form recommended
Queensland: Advance Health Directive under the Powers of Attorney Act 1998
South Australia: Advance Care Directive under the Advance Care Directives Act 2013
Western Australia: Advance Health Directive under the Guardianship and Administration Act 1990
Tasmania, ACT, NT: Various frameworks—consult local legislation and palliative care guidelines

All clinicians should ensure that resuscitation status, goals of care, and any advance care directives are clearly documented and communicated before the patient enters the active dying phase. The National Framework for Advance Care Planning (2011) and Advance Care Planning Australia (ACPA) provide national guidance.

Clinical Presentation & Diagnostic Criteria

The diagnosis of "actively dying" is clinical, based on a constellation of signs rather than any single parameter. Respiratory changes are among the most prominent features, but should be interpreted alongside other systemic changes.

Recognising the Actively Dying Patient

System	Expected Changes
Respiratory	Cheyne–Stokes pattern, agonal breaths, apnoeic pauses, gurgling secretions, tachypnoea alternating with bradypnoea
Neurological	Decreasing consciousness (drowsy → semi-comatose → comatose), myoclonus, terminal restlessness or agitation
Cardiovascular	Tachycardia or bradycardia, hypotension, peripheral cyanosis, mottling (livedo reticularis) of extremities
Renal	Oliguria or anuria, dark concentrated urine
GI/Nutrition	Refusal of food and fluids, dysphagia, nausea
Skin	Cool peripheries, pallor, cyanosis, diaphoresis

The presence of two or more of these system changes in a patient with an expected prognosis of days supports a clinical diagnosis of active dying. Respiratory changes are often the most visually and audibly apparent to families and should be actively discussed and anticipated.

Differentiating Distress from Normal Terminal Breathing

Not all altered breathing near death requires pharmacological intervention. The key distinction is between pattern change (normal) and respiratory distress (requires treatment):

Feature	Normal Terminal Breathing	Respiratory Distress
Patient consciousness	Unconscious or deeply sedated	May be conscious or semi-conscious
Facial expression	Peaceful, relaxed	Frightened, grimacing, distressed
Accessory muscle use	Absent	Present (sternocleidomastoid, intercostals)
Nasal flaring	Absent	May be present
Restlessness	Absent or minimal	May be prominent
Treatment indicated?	No—reassurance only	Yes—pharmacological treatment of dyspnoea

Investigations

In the actively dying patient, investigations are generally not indicated and may constitute an unnecessary burden. The diagnosis of terminal respiratory changes is clinical. Routine arterial blood gases, chest radiography, and blood tests are not recommended unless the clinical picture is genuinely uncertain and the results would change management.

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Principle: In palliative care, investigations should only be performed if the result will meaningfully change management and improve the patient's comfort. If treatment would not change regardless of the result, the investigation should not be done.

Available Clinical observation and assessment Respiratory rate, pattern, depth, presence of accessory muscle use, auscultation if clinically indicated. Essential at the bedside. No cost.

Available Pulse oximetry (SpO₂) May be used if the clinical picture is uncertain, but values should be interpreted cautiously—SpO₂ is often unreliable in patients with poor peripheral perfusion. MBS item 12203 (pulse oximetry). Generally not recommended as a routine monitor at end of life.

Referral Arterial blood gas (ABG) Rarely indicated. May be considered if diagnostic uncertainty exists regarding hypercapnia contributing to reduced consciousness. MBS item 65140. Available in hospital and some community settings.

Specialist Chest radiograph Not routinely indicated. May be considered if a reversible cause of respiratory distress is suspected (e.g., large pleural effusion amenable to drainage). MBS item 58106.

When to consider investigations: If a patient who was not expected to be dying develops sudden respiratory changes and there is clinical suspicion of a potentially reversible cause (e.g., pulmonary embolism, tension pneumothorax, large pleural effusion), a limited investigation may be appropriate—but only if the patient's goals of care support such intervention. Always discuss with the patient (if able), family, and palliative care team before proceeding.

Empirical Therapy — Management of Respiratory Distress

Pharmacological treatment of breathing changes near death is indicated only when there is objective evidence of respiratory distress. The goal of treatment is to relieve the sensation of breathlessness, not to alter the breathing pattern per se. The approach is stepwise, beginning with non-pharmacological measures.

Step 1 — Non-Pharmacological Measures

Positioning

Elevate the head of bed 30–45° (or as tolerated). If unconscious, lateral or semi-prone position to reduce aspiration risk and improve secretion drainage. Use pillows for support.

Fresh air / Fan

Direct a small fan at the patient's face. Evidence supports that cool airflow across the face reduces the sensation of dyspnoea via trigeminal nerve stimulation. Equally effective to supplemental oxygen in non-hypoxaemic dyspnoea.

Environment

Reduce excessive noise and stimulation. Calm, quiet environment. Open windows if weather permits. Presence of familiar people. Avoid excessive monitoring equipment if possible.

Reassurance

Calm, clear explanations to the patient (even if unconscious—hearing is thought to persist) and family. "We are making sure you are comfortable." "Your loved one is not suffering."

Step 2 — Opioid Therapy for Dyspnoea

Low-dose opioids are first-line pharmacological therapy for refractory dyspnoea at end of life. Opioids reduce the central respiratory drive response to hypoxia/hypercapnia, reduce the sensation of breathlessness, and have anxiolytic properties. In Australia, morphine is the most commonly used agent.

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Dose caution: Start with the lowest effective dose. In opioid-naïve patients, begin with morphine 2.5 mg SC 4-hourly PRN. There is no evidence that appropriately titrated opioids hasten death in the dying patient, but careful dose selection is essential. Always have naloxone available.

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Morphine

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

Adult dose (opioid-naïve) 2.5–5 mg SC 4-hourly PRN for dyspnoea; titrate by 30–50% increments every 4 hours if inadequate relief

Adult dose (opioid-tolerant) Increase current 4-hourly dose by 30–50% or add breakthrough dose of 10–20% of total daily dose SC 2-hourly PRN

Continuous SC infusion Convert PRN requirements to continuous subcutaneous infusion (CSCI) via syringe driver once requirements are established; typical range 5–20 mg/24 hr for opioid-naïve patients with dyspnoea

Route Subcutaneous preferred in the dying patient (syringe driver/continuous subcutaneous infusion). Oral if patient still able to swallow. Rectal is an alternative.

Paediatric dose 100–200 mcg/kg SC 4-hourly PRN (paediatric palliative care specialist guidance recommended)

Renal adjustment Reduce dose and extend interval if eGFR < 30 mL/min; morphine-6-glucuronide accumulates. Consider fentanyl or hydromorphone as alternatives in renal impairment.

Hepatic adjustment Reduce dose in severe hepatic impairment (Child-Pugh C)

PBS status ✔ PBS General Benefit (oral liquid, tablets)

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Fentanyl

Sublimaze® · Durogesic® · Opioid analgesic

Adult dose (SC injection) 25–50 mcg SC 2–4-hourly PRN; titrate as needed

Continuous SC infusion 25–100 mcg/hr via syringe driver once requirements established

Key notes Preferred in renal impairment (no active metabolites). Shorter acting—easier to titrate. Useful when morphine is not tolerated.

Renal adjustment No dose adjustment required—preferred agent in renal failure

Hepatic adjustment Use with caution in severe hepatic impairment; reduce dose

PBS status ⚠ PBS Authority Required

Step 3 — Anxiolytic Therapy

If dyspnoea persists despite opioid titration, or if there is a significant anxiety component (or concurrent terminal agitation/restlessness), add a benzodiazepine. Midazolam is the preferred agent in the subcutaneous route for the dying patient.

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Midazolam

Hypnovel® · Midazolam Injection · Benzodiazepine

Adult dose (PRN) 2.5–5 mg SC PRN 4-hourly for acute dyspnoea or anxiety; may repeat once after 1–2 hours if needed

Continuous SC infusion 10–30 mg/24 hr via syringe driver for refractory dyspnoea or terminal agitation; start at 10 mg/24 hr and titrate

Key notes Synergistic with opioids—use lower doses of both when combined. Monitor for excessive sedation and respiratory depression. Short acting allows rapid titration.

Renal adjustment No specific adjustment; use standard doses with monitoring

Hepatic adjustment Reduce dose in severe hepatic impairment (prolonged half-life)

PBS status ✔ PBS General Benefit (injection)

Supplemental Oxygen

Routine use of supplemental oxygen at end of life is not recommended in the absence of documented hypoxaemia causing distress. Key evidence points:

Randomised controlled trials in non-hypoxaemic dyspnoea (e.g., Bausewein et al., 2016) have shown no benefit of oxygen over room air delivered via nasal cannulae or a fan
Oxygen therapy can cause dry mucous membranes, nasal discomfort, and restricts mobility (tethering to equipment)
If the patient or family find comfort in the presence of oxygen for symbolic/psychological reasons, low-flow nasal cannulae (1–2 L/min) may be continued—but it should be clearly understood that the goal is comfort, not physiological correction
A handheld fan directed at the face is an equally effective non-pharmacological intervention for the sensation of breathlessness and should be offered as an alternative

Monitoring

Monitoring the dying patient is focused on comfort assessment rather than physiological parameters. The goal is to detect distress early and titrate treatment accordingly, not to monitor vital signs for their own sake.

What to Monitor

Parameter	Method	Frequency	Action
Respiratory comfort	Observation for signs of distress (see Clinical Presentation section)	Continuous (nursing/family); formal assessment every 1–2 hours by clinician	Titrate opioids and/or midazolam if distress identified
Respiratory rate	Visual count over 30–60 seconds	As part of comfort assessment	RR < 6/min or apnoea > 60 sec may indicate imminent death; reduce/stop opioid infusion if rate < 8/min and patient appears comfortable
Sedation level	Richmond Agitation-Sedation Scale (RASS) or Pasero Opioid Sedation Scale (POSS)	Every 1–2 hours after dose changes	RASS −4 to −5: deeply sedated—reduce dose if not intended; POSS 3+: hold opioid and notify medical officer
Secretions	Auditory assessment (gurgling/rattling) and family feedback	Every 4 hours or as reported	Reposition; consider glycopyrrolate or hyoscine butylbromide if distressing to family
Pain / overall comfort	Abbey Pain Scale (non-verbal patients) or FLACC (paediatric)	Every 4 hours minimum	Optimise analgesia if pain identified alongside respiratory distress

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Abbey Pain Scale: Validated for use in non-communicative patients in Australian aged-care and palliative care settings. Assesses six domains (vocalisation, facial expression, change in body language, behavioural change, physiological change, physical changes). Available free of charge. Recommended by the Aged Care Quality Standards for pain assessment in non-verbal residents.

Syringe Driver Management

Continuous subcutaneous infusions (CSCI) via syringe driver (commonly the McKinley T34 in Australian hospitals and community palliative care) are the standard method for delivering medications to the dying patient who cannot swallow. Common combinations for respiratory distress:

Dyspnoea: Morphine 5–20 mg/24 hr + Midazolam 10–20 mg/24 hr (in 0.9% NaCl or water for injection to 24 mL volume)
Dyspnoea + secretions: Add glycopyrrolate 600–1200 mcg/24 hr or hyoscine butylbromide 60–120 mg/24 hr to the same syringe (check compatibility)
Renal impairment: Substitute fentanyl for morphine (fentanyl 100–400 mcg/24 hr); hydromorphone is an alternative (1–4 mg/24 hr)

Always check drug compatibility in the syringe driver before mixing. The Palliative Care Therapeutic Guidelines and local palliative care service formularies provide compatibility charts. Subcut sites should be rotated every 48–72 hours or if signs of inflammation, swelling, or poor absorption occur.

Special Populations

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Paediatrics

Paediatric terminal breathing changes Breathing pattern changes near death are observed in neonates and children, though the patterns may be less classically Cheyne–Stokes. Neonatal dying patterns often include intermittent gasping with prolonged apnoeic pauses. Family-centred care and culturally sensitive communication are paramount.

Drug dosing Use weight-based dosing for all agents. Morphine 100–200 mcg/kg SC 4-hourly PRN; midazolam 50–100 mcg/kg SC PRN. Paediatric palliative care specialist involvement is strongly recommended. Consult local paediatric palliative care service (e.g., Bear Cottage, Queensland Paediatric Palliative Care Service).

Family support Parents of dying children require intensive, ongoing emotional support. Bereavement services should be offered proactively. Sibling support programs (e.g., provided by Very Special Kids in Victoria, Hummingbird House in Queensland) are available in some states.

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Pregnancy

Context Death during pregnancy is rare in Australia but may occur in the context of advanced malignancy or other terminal illness. Perimortem caesarean section should be considered if the gestation is ≥ 23 weeks and delivery is consistent with the patient's wishes and goals of care. The focus remains on the comfort and wishes of the mother.

Medication safety In the context of active dying, medication safety in pregnancy is secondary to maternal comfort. Opioids and benzodiazepines are acceptable for symptom management. Neonatal respiratory depression should be anticipated if delivery is planned.

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Elderly

Age-related considerations Older adults are more sensitive to opioids and benzodiazepines. Start with lower doses (morphine 1.25–2.5 mg SC PRN) and titrate slowly. Half-lives are prolonged. Renal function should be assessed (eGFR), as morphine metabolites accumulate in renal impairment—consider fentanyl or hydromorphone if eGFR < 30. Polypharmacy may contribute to terminal delirium; review and cease non-essential medications.

Residential aged care Approximately 18% of Australians die in residential aged care facilities. Staff training in recognition of terminal breathing changes and use of comfort care medication (subcutaneous routes) varies widely. Palliative care outreach services and education programs (e.g., the Program of Experience in the Palliative Approach, PEPA) should be utilised. The Aged Care Quality Standards (Standard 8) require that residents receive end-of-life care that is consistent with their preferences.

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Renal Impairment

Opioid selection Morphine is relatively contraindicated in severe renal impairment (eGFR < 30 mL/min) due to accumulation of morphine-6-glucuronide (active, causes prolonged sedation and respiratory depression) and morphine-3-glucuronide (neuroexcitatory—may cause myoclonus and seizures). Prefer fentanyl (no active metabolites) or hydromorphone (less accumulation). Reduce doses by 25–50% and extend intervals.

Midazolam No specific renal dose adjustment, but prolonged sedation may occur in the context of uraemia. Use standard starting doses with monitoring.

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Hepatic Impairment

Dose adjustments Reduced hepatic metabolism prolongs the half-life of morphine, midazolam, and most opioids. Reduce doses by 25–50% in Child-Pugh B–C. Fentanyl may be less affected but use with caution. Monitor for accumulation and excessive sedation.

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Immunocompromised

Considerations Respiratory changes in immunocompromised dying patients (e.g., HIV/AIDS, post-transplant, chemotherapy-induced) may have superadded infection-related causes (pneumonia, ARDS). If there is diagnostic uncertainty, a limited assessment (including chest X-ray) may be warranted to exclude a treatable reversible cause—but only if the patient's goals of care support intervention. In the actively dying immunocompromised patient, the approach to altered breathing is the same as in any dying patient: comfort-focused care with good communication.

Family Reassurance & Communication

Effective communication with families and carers is the single most important intervention for managing altered breathing near death. The majority of family distress is caused not by the breathing pattern itself, but by a lack of understanding about what is happening and uncertainty about whether their loved one is suffering.

Proactive Communication — Preparing Families Before the Final Hours

Ideally, conversations about what to expect during dying should occur before the active dying phase. This allows families to prepare emotionally and practically, and reduces the likelihood of crisis-driven escalation. Key information to share proactively:

Normalise breathing changes

"As the body naturally begins to shut down, breathing patterns often change. You may notice that breathing becomes faster and then slower, with pauses in between. This is a normal part of the process and does not mean [patient's name] is struggling or in pain."

Explain unconsciousness

"By this stage, [patient's name] is likely to be very deeply asleep or unconscious. They are unlikely to be aware of their breathing pattern. Hearing is thought to be the last sense to fade, so talking softly, holding their hand, and playing gentle music are all things you can do."

Describe gurgling sounds

"You may hear a rattling or gurgling sound. This is caused by secretions at the back of the throat and is very common. It sounds uncomfortable, but it is not causing [patient's name] distress—they are not aware of it. We can give medications to help reduce this if it is distressing for you."

Describe agonal breathing

"In the final moments, you might see some gasping or irregular breaths. These are reflex movements—the body's last efforts—and are not a sign of pain or struggle. It can be very confronting to see, but please know that [patient's name] is not suffering."

Describe the moment of death

"Eventually, breathing will simply stop. There is no dramatic final gasp in most cases—it is very peaceful. After breathing stops, the heart may continue beating for a short time, and you may notice some final movements of the body—these are also reflexes."

Offer permission and presence

"You are welcome to stay for as long as you wish. There is no rush. It is OK to cry, to talk to [patient's name], to hold them. Many families find comfort in being present. If you need to step out, that is also perfectly OK—you will not miss anything that cannot wait."

Managing Specific Family Concerns

Family Concern	Recommended Response
"Is he/she suffering?"	"We watch very carefully for any signs of discomfort. Right now, [patient's name] appears peaceful. Their breathing pattern may look alarming, but this is not a sign of suffering."
"Why isn't the oxygen helping?"	"At this stage, the body's breathing centre is changing naturally. Oxygen doesn't fix this pattern—it would be like trying to fix a computer problem by unplugging and plugging it back in. What we focus on is making sure [patient's name] is comfortable."
"The pauses between breaths are getting longer"	"That is expected. As the body continues its natural process, the pauses will gradually get longer. This tells us that [patient's name] is getting closer to the end, and that is consistent with what we have been discussing."
"Can you give more medication?"	"If [patient's name] shows signs of distress, we will increase the comfort medications. Right now, they appear comfortable. Giving more medication when there is no distress could cause side effects without benefit."
"Should we call an ambulance?"	"We understand the instinct to call for help. However, [patient's name] has chosen to focus on comfort care. Calling an ambulance would mean transfer to hospital with interventions that are not aligned with their wishes. We are here to make sure everything is as comfortable and peaceful as possible."

Post-Death Care and Bereavement

After death is confirmed, allow families time with the body. There is no medical urgency. Key practical steps:

Confirm death (absent heart sounds, absent reflexes, fixed dilated pupils, no respiratory effort for ≥ 5 minutes)
Complete the Medical Certificate of Cause of Death
Remove syringe drivers, IV/SC lines, and other medical devices when family is ready
Provide written bereavement information and contact details for support services
Refer to bereavement services: Grief Australia (1300 845 745), Palliative Care Australia, state-based palliative care bereavement programs
Follow up with the family GP to ensure bereavement risk assessment (particularly for complicated grief) is performed

Aboriginal and Torres Strait Islander Health

Aboriginal and Torres Strait Islander Health Considerations

Aboriginal and Torres Strait Islander peoples have distinct cultural, spiritual, and relational perspectives on dying, death, and bereavement. Understanding and respecting these perspectives is essential for providing culturally safe end-of-life care, including the management of altered breathing near death.

Cultural Context

Country and dying: Many Aboriginal and Torres Strait Islander people have a deep spiritual connection to Country. Dying on Country (i.e., in one's traditional lands) is often profoundly important. Facilitating return to Country for end-of-life care, where possible and desired, should be explored early in care planning.
Family and community: End-of-life care is frequently a communal experience. Large numbers of family and community members may wish to be present. Health services should accommodate extended family presence and avoid restricting visiting hours where culturally safe to do so.
Sorry Business: Death triggers "Sorry Business"—cultural mourning practices that may include extended grieving, smoking ceremonies, and avoidance of the deceased person's name or image. These practices must be respected and facilitated by health services.
Avoidance of the deceased: In many communities, there is a cultural practice of not speaking the name of or looking at images of the deceased. Health professionals should be aware of this and discuss it with the family, particularly regarding communication, documentation, and follow-up.
Spiritual beliefs: Some Aboriginal and Torres Strait Islander peoples hold beliefs about the spirit returning to Country after death. The body may be considered sacred during and after dying. Health professionals should ask about and respect specific cultural and spiritual practices rather than making assumptions.

Barriers to Care

Geographic isolation

Aboriginal and Torres Strait Islander peoples living in remote and very remote areas (MM 6–7) have significantly reduced access to specialist palliative care services, GPs, and palliative care medications. The Royal Flying Doctor Service (RFDS) provides aeromedical retrieval and primary health care to many remote communities, but specialist palliative care outreach is limited. Telehealth palliative care consultations (Medicare items 99, 114) are an important adjunct.

Health literacy and communication

Health information about dying processes must be communicated in plain, culturally appropriate language. English may not be the first language for some community members. Use of Aboriginal and Torres Strait Islander health practitioners, health workers, and interpreters is essential. Visual aids and storytelling approaches may be more effective than written information alone.

Historical and ongoing distrust

Historical trauma, forced removals, and systemic racism have created significant distrust of health services among many Aboriginal and Torres Strait Islander peoples. Building trust, demonstrating respect, and providing culturally safe care are prerequisites for effective end-of-life care. Indigenous health workers and liaison officers play a critical bridging role.

Institutional care aversion

Many Aboriginal and Torres Strait Islander people prefer to die at home or on Country rather than in institutional settings. Hospital and residential aged care environments may be perceived as culturally unsafe. Community-based palliative care models and advance care planning that facilitate home dying should be prioritised where feasible.

Medication access

Access to subcutaneous medications, syringe drivers, and pharmacy services is limited in some remote communities. Remote Area Aboriginal Health Services may stock limited palliative care medications. Pre-planning for end-of-life care should include ensuring medications are available (including through remote area health supply chains such as the Remote Area Health Corps or NT Government Pharmacy).

Recommended Actions for Clinicians

Ask the patient and family about their cultural preferences for dying, death, and mourning at the earliest opportunity
Involve Aboriginal and Torres Strait Islander health workers and liaison officers in all end-of-life discussions
Facilitate return to Country if desired and clinically appropriate
Use the National Aboriginal Community Controlled Health Organisation (NACCHO) resources and the Caring for Aboriginal and Torres Strait Islander Peoples at the End of Life guide (RHDAustralia)
Ensure visiting arrangements accommodate extended family and community presence during the dying process
Discuss Sorry Business practices and respect the family's wishes regarding the body, naming, and imagery after death
Connect with the local Aboriginal Community Controlled Health Organisation (ACCHO) for ongoing bereavement support
Be aware that the Closing the Gap initiative includes palliative care as a priority area; use available funding and support mechanisms

Quick Reference — Terminal Breathing Patterns

Cheyne–Stokes Respiration

No treatment for pattern; treat distress if present (morphine 2.5–5 mg SC PRN)

N/A — comfort care

Reassure family; pattern is not distressing to patient

Agonal Breathing

Midazolam 2.5–5 mg SC PRN if distress; lateral positioning

Minutes to hours

Reflexive; reassure family; death is imminent

Terminal Apnoea

No treatment; comfort measures only

Permanent — death follows

Ensure NFR/MOST plan is documented

Secretions ("Death Rattle")

Reposition + glycopyrrolate 200 mcg SC 4-hourly OR hyoscine butylbromide 20 mg SC 4-hourly

Hours to days

Not distressing to patient; treat for family comfort

📚 References

1. Palliative Care Australia. National Palliative Care Strategy 2018. Canberra: Australian Government Department of Health; 2018.
2. Australian Institute of Health and Welfare (AIHW). Palliative care services in Australia. Cat. no. HWV 66. Canberra: AIHW; 2023.
3. Currow DC, Agar M, Louw S, et al. Randomized, double-blind, placebo-controlled, dose-titration study of morphine for chronic breathlessness. N Engl J Med. 2022;387(13):1224–1234.
4. Bausewein C, Booth S, Gysels M, Higginson IJ. Non-pharmacological interventions for breathlessness in advanced stages of malignant and non-malignant diseases. Cochrane Database Syst Rev. 2008;(2):CD005623.
5. National Health and Medical Research Council (NHMRC). Clinical Practice Guidelines for the Management of Mesothelioma. Canberra: NHMRC; 2013. [Relevant for end-of-life dyspnoe management principles]
6. Ellershaw J, Ward C. Care of the dying patient: the last hours or days of life. BMJ. 2003;326(7379):30–34.
7. Hui D, dos Santos R, Chisholm G, et al. Clinical signs of impending death in cancer patients. Oncologist. 2014;19(6):681–687.
8. Royal Australian College of General Practitioners (RACGP). Providing end-of-life care: A guide for general practitioners. Melbourne: RACGP; 2020.
9. Advance Care Planning Australia (ACPA). National Framework for Advance Care Planning. Austin Health; 2011 (updated 2018).
10. Aboriginal and Torres Strait Islander Health Practice Board of Australia. Fact sheet: Cultural safety in end-of-life care. 2021.
11. Palliative Care Outcomes Collaboration (PCOC). National data report: Symptom burden at end of life. University of Wollongong; 2023.
12. Campbell ML. Terminal dyspnea and respiratory distress. Crit Care Clin. 2004;20(3):403–417.
13. National Aboriginal Community Controlled Health Organisation (NACCHO). Providing palliative care for Aboriginal and Torres Strait Islander peoples: A guide for health professionals. Canberra: NACCHO; 2019.
14. Australian Commission on Safety and Quality in Health Care (ACSQHC). National Consensus Statement: Essential elements for safe and high-quality end-of-life care. Sydney: ACSQHC; 2015.
15. Global Initiative for Chronic Obstructive Lung Disease (GOLD). Global Strategy for the Diagnosis, Management, and Prevention of COPD: Section on Palliative and End-of-Life Care. 2024 Report.

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).