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Paediatric Palliative Care

Last updated 1 Jun 2026 · Palliative care

📋 Key Information Summary

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  • Paediatric palliative care (PPC) supports infants, children, and young people with life-limiting conditions and their families — often delivered concurrently with disease-modifying treatment, not as an endpoint of care.
  • Approximately 3,000 children in Australia are living with a life-limiting illness at any given time; the most common diagnoses include malignancies, neurological conditions, genetic/congenital disorders, and metabolic diseases.
  • PPC is fundamentally family-centred: parents, siblings, grandparents, and the broader support network are all considered within the scope of care.
  • Advance care planning (ACP) should begin early, be revisited regularly, and involve the child (age-appropriately), family, and all members of the multidisciplinary team.
  • Children who benefit include those with cancer, severe neurological impairment, complex congenital heart disease, metabolic disorders, chromosomal abnormalities, and any condition with predicted shortened life expectancy.
  • Symptom management requires developmentally appropriate assessment tools: FLACC (2 months–7 years), Wong-Baker FACES (3–18 years), and numeric rating scales (≥8 years).
  • First-line analgesia follows the WHO Analgesic Ladder adapted for paediatrics: paracetamol → weak opioids (codeine/low-dose morphine) → strong opioids (morphine, fentanyl, methadone).
  • Opioid safety: equianalgesic conversion, naloxone availability on discharge, and regular review are mandatory. All opioids are Authority Required (Schedule 8) in Australia.
  • Dyspnoea management includes low-dose morphine (0.1–0.2 mg/kg PO/SL), supplemental oxygen for hypoxaemia only, and non-pharmacological strategies (positioning, fan therapy).
  • Aboriginal and Torres Strait Islander children experience higher rates of life-limiting illness and face significant barriers to palliative care access including remoteness, cultural safety concerns, and distrust of health systems.
  • End-of-life care in the home is feasible and preferred by many families; it requires coordinated community nursing, after-hours medical support, and emergency medication kits.
  • Bereavement support must be planned proactively and extended to all family members including siblings, who are at elevated risk of complicated grief.

Introduction & Australian Epidemiology

Paediatric palliative care (PPC) is an active, holistic approach to the care of children with life-limiting or life-threatening conditions, encompassing physical, emotional, social, and spiritual dimensions. Unlike adult palliative care, which is often initiated in the final months of life, PPC frequently begins at the time of diagnosis and may continue for years alongside curative or disease-modifying therapies. Care is family-centred, developmentally appropriate, and delivered across multiple settings — hospital, home, hospice, and community.

In Australia, the Australian Institute of Health and Welfare (AIHW) estimates that approximately 3,000 children aged 0–17 years are living with a life-limiting condition at any given time, with a further 9,000–12,000 living with a life-threatening condition where premature death is a possibility. The incidence of paediatric death in Australia is approximately 1,100–1,300 per year in the 0–17 age group, of whom roughly 30–40% die from conditions amenable to palliative care input.

Category Examples Approximate Proportion
Malignancy Brain tumours, leukaemia, neuroblastoma, sarcomas ~30%
Neurological conditions Severe cerebral palsy, neurodegenerative disorders, spinal muscular atrophy ~25%
Genetic/congenital conditions Trisomy 13/18, severe congenital heart disease, Edwards syndrome ~20%
Metabolic diseases Mitochondrial disorders, lysosomal storage diseases, peroxisomal disorders ~10%
Other Prematurity complications, organ failure, immune deficiencies, trauma ~15%

The National Palliative Care Strategy (2018) and Palliative Care Australia's National Consensus Statement emphasise that all children with life-limiting conditions should have access to specialist PPC. In practice, however, access varies significantly by jurisdiction, remoteness, and diagnosis. Major tertiary paediatric centres (Royal Children's Hospital Melbourne, Children's Hospital Westmead, Queensland Children's Hospital, Perth Children's Hospital) provide inpatient and consultative PPC services, while community-based palliative care for children remains underdeveloped in many regions.

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Key distinction: Paediatric palliative care is not limited to the end of life. Many children receive PPC input for years while continuing active treatment. Transition between curative and palliative intent is often non-linear and iterative.

Children Who Benefit

PPC benefits children across a wide spectrum of diagnoses and prognoses. The Association for Children's Palliative Care (ACT) and the Royal College of Paediatrics and Child Health (RCPCH) classification of life-limiting conditions provides a useful framework widely adopted in Australian practice:

Group 1
Life-Threatening — Curable
Conditions where curative treatment is possible but may fail (e.g., cancer, organ failure amenable to transplant). PPC supports alongside active treatment and is available if treatment fails.
Setting: Concurrent with active treatment
Group 2
Life-Limiting — Premature Death Expected
Conditions where there is no cure but treatment can extend life (e.g., cystic fibrosis, Duchenne muscular dystrophy, complex congenital heart disease). PPC provides parallel support over years.
Setting: Long-term parallel care
Group 3
Life-Limiting — Progressive, No Cure
Progressive conditions where treatment is exclusively palliative (e.g., Batten disease, mucopolysaccharidoses, mitochondrial disorders). PPC is the primary model of care from diagnosis.
Setting: Comprehensive PPC-led care
Group 4
Irreversible, Non-Progressive — Severe Disability
Conditions causing severe disability with vulnerability to health complications and premature death (e.g., severe cerebral palsy, post-hypoxic encephalopathy). PPC provides symptom management and family support.
Setting: Ongoing supportive care

When to Refer to Paediatric Palliative Care

1
At Diagnosis
All children with Group 3 and Group 4 conditions should be referred at or near the time of diagnosis. Early referral normalises PPC as part of comprehensive care.
2
At Disease Progression
When curative or disease-modifying treatments are failing, when hospitalisations are increasing, or when the family expresses goals shifting toward comfort and quality of life.
3
Complex Symptom Burden
When symptoms (pain, dyspnoea, seizures, nausea) are inadequately controlled by the primary treating team, specialist PPC input for symptom management is indicated at any stage.
4
End of Life
When death is anticipated, PPC facilitates advance care planning, end-of-life symptom management, and bereavement support. Referral should not be delayed until this stage.
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Late referral is the most common barrier to optimal paediatric palliative care. Early referral does not mean giving up hope — it means adding an extra layer of support. Families consistently report wishing they had been referred earlier.

Neonates represent a distinct population where PPC is particularly important. Decisions around redirection of care in neonatal intensive care, perinatal palliative care for antenatally diagnosed lethal conditions (e.g., trisomy 13, anencephaly, bilateral renal agenesis), and support for parents making decisions about intensive care initiation or withdrawal all benefit from early PPC involvement.

Family-Centred Care

Family-centred care is the foundational philosophy of paediatric palliative care. In PPC, the "unit of care" extends beyond the child to include parents, siblings, grandparents, and the broader family and social network. This approach recognises that the illness of a child profoundly affects the entire family system, and that supporting the family directly improves outcomes for the child.

Core Principles

  • Dignity and respect: Honouring family knowledge, values, cultural practices, and preferences in all aspects of care planning and delivery.
  • Information sharing: Providing complete, honest, and timely information in a manner appropriate to the family's readiness, literacy level, and cultural context. Avoiding both information overload and withholding.
  • Participation: Supporting families to participate in care at their desired level — from hands-on personal care to shared decision-making about treatment goals.
  • Collaboration: Integrating family perspectives into care planning, policy development, and service design at institutional and system levels.
  • Flexibility: Adapting care delivery to the family's changing needs, preferences, and circumstances over time.

The Multidisciplinary Team

Effective PPC requires a coordinated multidisciplinary team (MDT). The composition varies by setting and diagnosis, but the core team typically includes:

Discipline Role in PPC
Paediatric palliative care specialist / general paediatrician Clinical leadership, symptom management, care coordination, advance care planning facilitation
Paediatric nurse (hospital/community) Direct care delivery, family education, care coordination, after-hours support
Social worker Psychosocial assessment, counselling, practical support (financial, accommodation), family advocacy
Psychologist Behavioural assessment, therapeutic interventions for child and family, grief and bereavement counselling
Spiritual care / chaplaincy Spiritual assessment, ritual and ceremony support, existential distress, culturally specific practices
Physiotherapist / occupational therapist Maintaining function, equipment provision, positioning, comfort, quality of life
Speech pathologist Communication support, feeding and swallowing assessment, alternative/augmentative communication
Music / art / play therapist Developmentally appropriate therapeutic engagement, legacy creation, emotional expression
Pharmacist Medication management, compounding, equianalgesic calculations, community liaison
Aboriginal and Torres Strait Islander health worker Cultural brokerage, family liaison, community engagement, ensuring culturally safe care delivery

Siblings

Siblings are frequently overlooked in paediatric illness yet experience significant emotional, psychological, and social impact. They may experience anticipatory grief, anxiety, behavioural changes, academic difficulties, guilt, anger, and social isolation. Sibling-specific interventions include:

  • Age-appropriate information about the illness and prognosis
  • Dedicated time with parents and the healthcare team
  • Sibling support programmes (e.g., Sibling Support at RCH Melbourne)
  • Involvement in care and legacy activities where desired
  • Ongoing bereavement support extending 12–24 months post-death

Carer Wellbeing

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Parental burnout and psychological morbidity are common. Studies report rates of anxiety (30–50%) and depression (20–40%) in parents of children with life-limiting conditions. Clinicians must actively screen for and address carer distress. Respite care is a clinical intervention, not a luxury. Carer Gateway (1800 422 737) provides free counselling and support services nationally.

Respite options in Australia include in-home respite through the National Disability Insurance Scheme (NDIS), community-based respite services, and children's hospices (e.g., Bear Cottage in NSW, Hummingbird House in Queensland, Very Special Kids in Victoria, and the ACT's Karinya House). Families should be connected to these services early in the disease trajectory.

Advance Care Planning

Advance care planning (ACP) in paediatrics is the process of discussing and documenting future health care preferences with the child (where developmentally appropriate), their family, and the healthcare team. Unlike adult ACP, paediatric ACP must navigate the unique ethical landscape of proxy decision-making by parents, evolving child autonomy, and the frequent prognostic uncertainty inherent in paediatric life-limiting conditions.

Key Elements of Paediatric ACP

  • Understanding the illness: Ensuring the family has an accurate, compassionate understanding of the diagnosis, prognosis, and expected trajectory — including uncertainty.
  • Values and goals: Exploring what matters most to the child and family — comfort, quality of life, being at home, attending school, milestones, spiritual practices.
  • Treatment preferences: Discussing specific interventions: cardiopulmonary resuscitation (CPR), mechanical ventilation, artificial nutrition and hydration, antibiotics for infection, escalation to intensive care.
  • Place of care and death: Identifying the family's preferred setting for end-of-life care (home, hospital, hospice) and developing a plan to support this.
  • Emergency planning: Creating an emergency care plan (e.g., Resuscitation Plan / Goals of Care document) that can be actioned by ambulance services, emergency departments, and after-hours GPs.
  • Organ and tissue donation: Raising the topic sensitively where appropriate, in accordance with DonateLife state-based protocols.

Involving the Child

Children's capacity to participate in ACP depends on developmental stage, cognitive function, illness severity, and the family's wishes. Even young children can express preferences about comfort measures, who they want present, and what they understand about their illness. Adolescents should be actively engaged in ACP conversations, consistent with the evolving Gillick competence framework applied in Australian jurisdictions.

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Documentation standards vary by state and territory. In Victoria, the Resuscitation Plan (substituted by the Goals of Care plan from 2024) is legally recognised. In NSW, the Resuscitation Plan (REAP) form is used. Queensland uses the Goals of Patient Care form. Clinicians must use the locally valid documentation and ensure copies are provided to the family, GP, ambulance service, and emergency department.

Ethical Considerations

Issue Australian Guidance
Parental authority Parents are the primary decision-makers for minors. Decisions must be in the child's best interests. Clinicians may seek ethics committee or court review if parental decisions cause significant suffering.
Adolescent consent Gillick competence applies: a mature minor may consent to (or refuse) treatment. Assessment of competence is clinical, not age-based. State-specific legislation (e.g., Minors (Property and Contracts) Act 1970 NSW) applies.
Withholding/withdrawing treatment Ethically and legally permissible when treatment is futile, burdensome, or not in the child's best interests. Requires careful communication, documentation, and ideally consensus. Ethics committee consultation recommended if conflict exists.
Double effect Administering opioids or sedatives with the primary intention of relieving suffering, even if a secondary effect is respiratory depression, is ethically and legally accepted in Australian paediatric practice.
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Do not wait for a crisis to initiate ACP. ACP is a process, not a single conversation. Begin early, review at disease milestones, and document clearly. Families consistently report that well-facilitated ACP reduces anxiety and increases confidence in care — even when the conversations are difficult.

Symptom Management in Children

Effective symptom management is a core responsibility of PPC. Children with life-limiting conditions experience a high symptom burden — studies report a median of 8–11 concurrent symptoms. Pain, dyspnoea, seizures, nausea/vomiting, constipation, secretion management, fatigue, and neuropsychological distress are the most prevalent. Symptom management must be developmentally appropriate, regularly reassessed, and involve the family in goal-setting.

Symptom Assessment Tools

Tool Age Range Type Application
FLACC (Face, Legs, Activity, Cry, Consolability) 2 months – 7 years Observational Acute and procedural pain; non-verbal children
Wong-Baker FACES Pain Rating Scale 3 – 18 years Self-report Pain intensity; easy to use across literacy levels
Numeric Rating Scale (NRS) ≥ 8 years Self-report Pain and symptom intensity; 0–10 scale
COMFORT-B Scale 0 – 17 years (ventilated/sedated) Observational Sedation and distress in PICU
PPC-specific POS (Paediatric POS) All ages Outcome measure Quality of life and palliative care outcomes

Pain Management

Paediatric pain management follows the WHO Analgesic Ladder (modified for children). Adequate analgesia should not be withheld due to fears of opioid dependence. Under-treatment of pain in children is harmful and is a recognised quality and safety concern.

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Paracetamol
Panadol®, Dymadon® · Simple analgesic · Step 1
Adult dose 500–1000 mg PO/PR QID (max 4 g/day)
Paediatric dose 15 mg/kg PO/IV QID (max 60 mg/kg/day, ≤ 90 mg/kg/day short course)
Route PO, PR, IV
Renal adjustment Reduce dose in eGFR <30 mL/min; extend interval to Q6–8H
PBS status ✔ PBS General Benefit
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Ibuprofen
Nurofen®, Brufen® · NSAID · Step 1 (adjunct)
Paediatric dose 5–10 mg/kg PO TDS (max 30 mg/kg/day, adult max 2.4 g/day)
Route PO
Renal adjustment Avoid in eGFR <30 mL/min; caution in dehydration
Key notes Use with caution in bone pain, soft tissue inflammation. Avoid in thrombocytopenia, GI bleeding risk.
PBS status ✔ PBS General Benefit
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Morphine
MS Contin®, Ordine® · Strong opioid · Step 2–3
Paediatric dose (opioid-naïve) 0.1–0.2 mg/kg PO Q4H (immediate release); 0.05–0.1 mg/kg IV/SC Q2–4H PRN
Paediatric dose (maintenance) 0.2–0.4 mg/kg PO Q4H; titrate to effect. Modified-release: 0.4–0.8 mg/kg Q12H
Breakthrough dose 10–20% of total 24-hour opioid dose, Q1–2H PRN
Route PO, SL, IV, SC, PR
Renal adjustment Reduce dose and extend interval; active metabolites accumulate. Consider fentanyl or methadone in renal impairment.
PBS status Authority Required (S8)
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Fentanyl
Sublimaze®, Durogesic® · Strong opioid · Step 3
Paediatric dose (IV) 0.5–1 mcg/kg IV Q1–2H PRN; infusion 0.5–2 mcg/kg/hr
Paediatric dose (transdermal) 12 mcg/hr patch Q72H (≥ 2 years, stable opioid requirements); not for opioid-naïve
Route IV, SC, transdermal, intranasal (off-label), SL (effervescent tablet)
Renal adjustment Safer than morphine in renal impairment — preferred in CKD
PBS status Authority Required (S8)
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Methadone
Physeptone® · Strong opioid (NMDA antagonist) · Step 3
Paediatric dose 0.1 mg/kg PO Q8H (opioid-naïve); titrate cautiously every 3–5 days. Bioavailability ~80% PO.
Key notes Long and variable half-life (15–60 hrs); NMDA antagonism useful for neuropathic pain. Requires specialist initiation. Accumulates — risk of delayed toxicity. ECG monitoring recommended (QTc prolongation risk).
Renal adjustment No dose adjustment required; safe in renal failure
PBS status Authority Required (S8)
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Ketamine
Ketalar® · NMDA antagonist · Adjunctive (specialist use)
Paediatric dose Sub-anaesthetic: 0.1–0.5 mg/kg/hr IV infusion; or 0.5 mg/kg PO TDS. Titrate to effect.
Key notes Used for refractory pain, opioid-sparing, neuropathic pain, and complex procedural sedation. Specialist initiation and monitoring required.
PBS status Authority Required (S4)

Dyspnoea Management

Dyspnoea is one of the most distressing symptoms in paediatric palliative care. Management should target the underlying cause where possible while providing symptomatic relief.

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Morphine (for dyspnoea)
Ordine® · Opioid
Paediatric dose 0.1–0.2 mg/kg PO/SL Q4H; or 0.05 mg/kg SC/IV Q2–4H PRN. Lower doses than for pain.
Mechanism Reduces central respiratory drive, decreases the sensation of breathlessness. Does NOT worsen survival when used at appropriate doses.
PBS status Authority Required (S8)
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Midazolam (for dyspnoea)
Hypnovel® · Benzodiazepine
Paediatric dose 0.05–0.1 mg/kg SC/IV Q2–4H PRN; or 0.1–0.3 mg/kg PO Q4–6H
Key notes Useful adjunct when dyspnoea is associated with anxiety or air hunger. Does not directly reduce the sensation of breathlessness but reduces the associated distress.
PBS status Authority Required (S4)
✅
Non-pharmacological strategies for dyspnoea: Positioning (upright, supported), cool air / fan directed to face, reducing environmental triggers, breathing techniques (age-appropriate), relaxation and distraction. Supplemental oxygen is indicated for documented hypoxaemia (SpO₂ <92%) — it does not relieve the sensation of dyspnoea in non-hypoxic patients.

Seizure Management

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Midazolam (seizure management)
Hypnovel® · Benzodiazepine
Paediatric dose (acute) 0.15 mg/kg IV/IO; or 0.5 mg/kg buccal (max 10 mg); or 0.2 mg/kg intranasal
Paediatric dose (continuous) 0.05–0.5 mg/kg/hr IV infusion for status epilepticus
PBS status Authority Required (S4)
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Levetiracetam
Keppra® · Anticonvulsant
Paediatric dose 10–15 mg/kg PO BD (max 30 mg/kg BD); or 20–40 mg/kg IV loading dose
Key notes First-line maintenance anticonvulsant in PPC. Few drug interactions, broad-spectrum efficacy, available IV. Minimal hepatic metabolism — safe in hepatic impairment.
Renal adjustment Reduce dose by 50% in eGFR <30 mL/min
PBS status ✔ PBS General Benefit

Nausea and Vomiting

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Ondansetron
Zofran® · 5-HT₃ antagonist
Paediatric dose 0.1–0.15 mg/kg PO/IV Q8H (max 8 mg per dose)
Key notes Effective for chemotherapy-induced and opioid-induced nausea. Common first-line agent. Constipation may be additive with opioids.
PBS status ✔ PBS General Benefit
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Metoclopramide
Maxolon® · Prokinetic / D₂ antagonist
Paediatric dose 0.1–0.15 mg/kg PO/IV Q6–8H (max 0.5 mg/kg/day). Use for ≤ 5 days.
Key notes Prokinetic role useful for gastroparesis and opioid-induced nausea. Caution: extrapyramidal side effects, particularly in adolescents. Avoid prolonged use.
PBS status ✔ PBS General Benefit
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Dexamethasone
Dexmethsone® · Corticosteroid
Paediatric dose 0.15–0.3 mg/kg PO/IV OD (max 8 mg/day); taper to lowest effective dose
Key notes Effective for raised intracranial pressure, bowel obstruction, hepatomegaly-related nausea, and chemotherapy-induced nausea. Use short courses where possible.
PBS status ✔ PBS General Benefit

Constipation

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Opioid-induced constipation must be anticipated and prevented. All children commenced on opioids should receive regular laxatives from day one. Do not wait for symptoms. Titrate to maintain soft stool every 1–2 days.
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Macrogol 3350 + electrolytes
Movicol® · Osmotic laxative
Paediatric dose <2 years: ½–1 sachet/day. 2–6 years: 1 sachet/day. 7–12 years: 2 sachets/day. ≥12 years: 1–3 sachets/day. Titrate to effect.
PBS status ✔ PBS General Benefit
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Sodium picosulfate
Dulcolax SP® · Stimulant laxative
Paediatric dose 0.25–0.5 mg/kg PO nocte (commonly: <1 year: 2.5 mg; 1–4 years: 2.5–5 mg; 5–12 years: 5–10 mg)
Key notes Add to osmotic laxative when opioid-induced constipation is not controlled by macrogol alone.
PBS status ✔ PBS General Benefit

Secretion Management (Death Rattle)

Upper airway secretions in the dying child can be distressing for families, although they are generally not distressing to the child. Management focuses on positioning and pharmacological reduction of secretions.

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Hyoscine butylbromide
Buscopan® · Anticholinergic
Paediatric dose 0.5–1 mg/kg SC/IV Q4–6H (max 20 mg per dose); or 10–20 mg sublingual
Key notes First-line for secretion management. Does not cross blood-brain barrier (fewer CNS side effects than glycopyrrolate). Monitor for urinary retention.
PBS status ✔ PBS General Benefit
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Glycopyrrolate
Glycopyrronium · Anticholinergic
Paediatric dose 4–10 mcg/kg SC/IV Q4–6H (max 200 mcg per dose)
Key notes Alternative to hyoscine butylbromide. Does not cross blood-brain barrier. Longer duration of action. May be preferred when tachycardia limits hyoscine use.
PBS status Authority Required (S4)

Agitation and Restlessness at End of Life

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Midazolam (end-of-life sedation)
Hypnovel® · Benzodiazepine
Paediatric dose 0.05–0.1 mg/kg SC/IV Q1–2H PRN; or 0.05–0.2 mg/kg/hr SC/IV continuous infusion. Titrate to comfort.
Key notes First-line for terminal agitation and refractory dyspnoea-related distress. Titrate to effect — the goal is comfort, not sedation. Palliative sedation is ethically permissible when symptoms are refractory.
PBS status Authority Required (S4)

Quick Reference: Symptom–Drug Summary

Symptom
First-Line
Second-Line
Notes
Pain (mild)
Paracetamol ± ibuprofen
Tramadol (≥12 years)
Regular dosing, not PRN
Pain (moderate–severe)
Morphine
Fentanyl, methadone
Start low, titrate Q24–48H
Neuropathic pain
Gabapentin or amitriptyline
Ketamine (specialist)
May co-exist with nociceptive pain
Dyspnoea
Low-dose morphine ± midazolam
Fan, positioning
O₂ only if SpO₂ <92%
Seizures
Midazolam (acute) / levetiracetam (maintenance)
Sodium valproate, clobazam
Buccal midazolam for community use
Nausea/vomiting
Ondansetron
Metoclopramide, dexamethasone, cyclizine
Consider cause: opioid, ICP, bowel obstruction
Constipation
Macrogol ± sodium picosulfate
Docusate, senna, rectal interventions
Prevent from day 1 of opioids
Secretions
Hyoscine butylbromide
Glycopyrrolate
Positioning, suction only if needed
Agitation (terminal)
Midazolam
Levomepromazine (specialist)
Titrate to comfort; rule out reversible causes

Special Populations

👶

Neonates

Perinatal palliative care
For antenatally diagnosed lethal conditions, offer a perinatal palliative care plan. This includes birth planning, comfort care at delivery, symptom management, memory-making, and bereavement support. Not a substitute for NICU if the prognosis is uncertain.
Drug metabolism
Neonatal hepatic and renal immaturity significantly affects drug clearance. Opioids require lower doses and longer intervals. Morphine: 0.05 mg/kg PO Q6–8H in neonates. Midazolam: 0.05 mg/kg SC/IV Q4–6H.
Ethics
Decision-making about intensive care initiation, continuation, and withdrawal in neonates is complex. Ethics consultation should be sought early when there is disagreement between the medical team and parents.
🧒

Infants and Young Children (1 month – 5 years)

Symptom assessment
Use observational tools (FLACC) as children cannot self-report reliably. Parents are often the most accurate assessors of their child's pain and distress — trust parental observations.
Oral medication
Palatability is critical. Use flavoured formulations, compounding pharmacies, and alternative routes (buccal, intranasal, transdermal) when oral administration is difficult.
Developmental impact
Chronic illness and hospitalisation disrupt developmental milestones. Incorporate play therapy, developmental support, and normalisation strategies into the care plan.
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School-Age Children (6–12 years)

Understanding and participation
Children in this age group can understand illness and death concepts to varying degrees. Provide honest, age-appropriate information. Involve them in decisions about comfort measures and care preferences where possible.
School and social engagement
Maintain school attendance and peer contact as much as possible. Hospital school programmes, home tutoring, and virtual school connections support normalcy and reduce isolation.
🧑

Adolescents (13–17 years)

Autonomy and consent
Adolescents should be actively involved in all aspects of care planning. Assess Gillick competence for treatment decisions. Respect their privacy, identity, and need for independence. Peer relationships and romantic relationships are developmentally important and should be supported.
Transition to adult services
For adolescents with chronic life-limiting conditions, transition planning to adult palliative care services should begin at 14–16 years. Many adult palliative care services lack paediatric expertise — early liaison is essential.
Psychological needs
Body image, identity, existential distress, and fear of death are profoundly intensified in adolescents with life-limiting illness. Access to age-appropriate psychological and psychiatric support is essential.
🫘

Renal Impairment

Opioid selection
Morphine metabolites (M6G, M3G) accumulate in renal failure — reduce dose and extend interval, or switch to fentanyl or methadone. Hydromorphone is an alternative with less metabolite accumulation.
Anticonvulsants
Levetiracetam requires dose reduction in renal impairment. Gabapentin and pregabalin require significant dose reduction. Valproate is hepatically cleared — no adjustment required.
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Hepatic Impairment

Drug metabolism
Reduced hepatic clearance affects morphine, midazolam, and most anticonvulsants. Start at lower doses, titrate cautiously. Paracetamol dosing should not exceed 60 mg/kg/day. Fentanyl is safer than morphine in moderate hepatic impairment.
Coagulopathy
Hepatic coagulopathy increases bleeding risk. Avoid NSAIDs. Consider vitamin K and fresh frozen plasma if active bleeding occurs. IM injections should be avoided.
Aboriginal and Torres Strait Islander Health Considerations

Aboriginal and Torres Strait Islander children experience disproportionately higher rates of life-limiting illness, including rheumatic heart disease, chronic kidney disease, severe otitis media complications, and certain cancers. The burden of paediatric palliative care need in First Nations communities is significant, yet access to culturally safe, community-based PPC services remains deeply inequitable.

Cultural safety
Healthcare providers must engage with cultural practices around death, dying, and mourning. Avoidance of the deceased person's name and image, Sorry Business protocols, and extended family involvement in care decisions are fundamental. Culturally unsafe care drives disengagement and distrust.
Family and community structures
Decision-making is often collective, involving extended family and Elders. Nuclear-family-focused models of family-centred care may not adequately encompass the kinship network. Aboriginal and Torres Strait Islander health workers and liaison officers are essential in facilitating culturally appropriate communication.
Remote and very remote access
Many Aboriginal and Torres Strait Islander families live in remote or very remote communities where specialist PPC services, community palliative care nursing, and after-hours medical support are unavailable or extremely limited. Telehealth can bridge some gaps but cannot replace hands-on clinical care.
Preferred place of care and death
Many families strongly prefer care and death on Country — in their community, on their ancestral land. Supporting this requires coordinated transport, equipment supply, medication access, and remote clinical support. The cost and logistics are often prohibitive without specific funding and planning.
Language and health literacy
English may be a second, third, or fourth language for some families. Health information must be provided in plain language, with interpreter services (including Aboriginal Interpreter Service in the NT, and equivalent services in other jurisdictions). Written materials should be culturally and linguistically appropriate.
Intergenerational trauma
The legacy of the Stolen Generations, forced removal of children, and institutional racism creates deep distrust of health and welfare systems. The involvement of a dying child with government services can be intensely distressing. Trauma-informed care is essential at every interaction.
Bereavement and grief
Aboriginal and Torres Strait Islander bereavement practices are distinct, communal, and may involve prolonged mourning periods. Mainstream bereavement services often fail to meet these needs. Community-controlled bereavement programmes and linkages to local cultural support are essential.
Workforce
There is a critical shortage of Aboriginal and Torres Strait Islander health professionals in palliative care. Investing in the Aboriginal and Torres Strait Islander palliative care workforce — including training, mentoring, and culturally supported career pathways — is a national priority identified by Palliative Care Australia.
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Systemic inequity: Aboriginal and Torres Strait Islander children are less likely to receive specialist palliative care referral, less likely to die at home (despite this being their family's preference in many cases), and more likely to experience poorly managed symptoms. Closing this gap requires structural reform, dedicated funding, and genuine community partnership — not just individual clinician awareness.

📚 References

  1. 1. World Health Organization. WHO Definition of Palliative Care for Children. Geneva: WHO; 2024. Available from: https://www.who.int/health-topics/palliative-care
  2. 2. Australian Institute of Health and Welfare. Palliative care services in Australia. AIHW Cat. No. HWI 331. Canberra: AIHW; 2023.
  3. 3. Palliative Care Australia. National Palliative Care Strategy 2018. Canberra: Department of Health; 2018.
  4. 4. Fraser LK, Miller M, Hain R, et al. Rising national prevalence of life-limiting conditions in children in England. Pediatrics. 2012;129(4):e923–e929.
  5. 5. Together for Short Lives. A Guide to Children's Palliative Care. 4th ed. Bristol: Together for Short Lives; 2023.
  6. 6. Royal Children's Hospital Melbourne. Clinical Practice Guidelines: Paediatric Palliative Care. Melbourne: RCH; 2023. Available from: https://www.rch.org.au/clinicalguide/
  7. 7. National Health and Medical Research Council. National Statement on Ethical Conduct in Human Research. Canberra: NHMRC; 2023 (updated).
  8. 8. Knapp C, Madden V, Wang H, et al. Paediatric palliative care: review of research and evidence-based outcomes. J Paediatr Child Health. 2011;47(7):431–436.
  9. 9. International Children's Palliative Care Network. ICPCN Strategic Plan 2023–2028. London: ICPCN; 2023.
  10. 10. Mitchell S, Morris A, Bennett K, Sajid L, Dale J. Paediatric palliative care: a systematic review of the evidence. BMC Palliative Care. 2017;16(1):59.
  11. 11. Royal Australasian College of Physicians. Paediatric Palliative Care Position Statement. Sydney: RACP; 2022.
  12. 12. Anderson K, Brunelli C, Lohre D, et al. Paediatric advance care planning: a systematic review. Arch Dis Child. 2022;107(4):327–334.
  13. 13. Australian Commission on Safety and Quality in Health Care. National Consensus Statement: Essential Elements for Safe and High-Quality End-of-Life Care. Sydney: ACSQHC; 2015.
  14. 14. Abbott P, Dave D, Gordon E, et al. Aboriginal palliative care: a systematic review of evidence. Aust J Prim Health. 2023;29(2):101–112.
  15. 15. Howard RF, Wiener S, Walker SM. Management of pain in children with life-limiting conditions. Arch Dis Child. 2021;106(6):531–537.
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. 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. 2. National Health and Medical Research Council (NHMRC). Evidence-based management of acute musculoskeletal pain. Canberra: NHMRC; 2003 (updated 2020).
  3. 3. Australian Institute of Health and Welfare (AIHW). Aboriginal and Torres Strait Islander Health Performance Framework: Summary report 2023. Canberra: AIHW; 2023.
  4. 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. 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. 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. 7. Royal Australian College of General Practitioners (RACGP). Guidelines for preventive activities in general practice. 9th edn. Melbourne: RACGP; 2018 (updated 2023).
  8. 8. Hirsch JA, Singh V, Falco FJE, et al. Thoracic facet joint interventions. Pain Physician. 2016;19(4):E581–E593.
  9. 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. 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. 11. Ombregt L. A system of orthopaedic medicine. 3rd edn. Edinburgh: Churchill Livingstone Elsevier; 2013. Chapter 18: Thoracic spine.
  12. 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. 1. Australian Institute of Health and Welfare (AIHW). Autoimmune disease in Australia. Cat. no. PHE 312. Canberra: AIHW; 2023.
  2. 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. 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. 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. 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. 6. Australian Technical Advisory Group on Immunisation (ATAGI). Australian Immunisation Handbook. Australian Government Department of Health; 2024. Available from: immunisationhandbook.health.gov.au.
  7. 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. 8. Pharmaceutical Benefits Scheme (PBS). PBS Schedule. Australian Government Department of Health. Available from: pbs.gov.au. Accessed 2024.
  9. 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. 10. Pisetsky DS. Antinuclear antibody testing — misunderstood or misused? Clin Immunol. 2023;255:109717.
  11. 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. 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. 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
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. 1. Australian Institute of Health and Welfare (AIHW). Autoimmune disease in Australia. Cat. no. PHE 312. Canberra: AIHW; 2023.
  2. 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. 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. 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. 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. 6. Australian Technical Advisory Group on Immunisation (ATAGI). Australian Immunisation Handbook. Australian Government Department of Health; 2024. Available from: immunisationhandbook.health.gov.au.
  7. 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. 8. Pharmaceutical Benefits Scheme (PBS). PBS Schedule. Australian Government Department of Health. Available from: pbs.gov.au. Accessed 2024.
  9. 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. 10. Pisetsky DS. Antinuclear antibody testing — misunderstood or misused? Clin Immunol. 2023;255:109717.
  11. 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. 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. 13. National Health and Medical Research Council (NHMRC). National statement on ethical conduct in human research. Canberra: NHMRC; 2023 (updated).