Paediatric Palliative Care Guidelines
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Edition/Revision: 4.0
Validated 22 Oct 2016


Consider the following causes:

  • Urinary retention
  • Constipation
  • Gastro-oesophageal reflux
  • Medication
  • Epileptic seizures
  • Muscle spasm
  • Unidentified injury or fracture
  • Sepsis
  • Cerebral causes: raised intracranial pressure, intracerebral bleed
  • Hypoxia
  • Environmental irritation: too hot/ cold/ bright light
  • Fear/ anxiety
  • Uncontrolled pain
  • Nausea
  • Positioning
General measures
  • Treat specific causes, see below
  • In addition and if the measures below are unsuccessful, medical intervention may be necessary
  • Benzodiazepines are the most commonly used medication in this setting. Haloperidol may also be helpful
Causes of Agitation
  • Urinary retention
    Children with neurodegenerative disease often have ongoing problems with retention of urine. Constipation may cause or exacerbate retention.
    Retention predisposes to urinary tract infection which will add to the discomfort, so consider ‘dipsticking’ urine or sending a midstream specimen (MSU) sample for analysis. Retention may be relieved by gentle bladder massage or a warm bath; catheterisation may also be necessary but need not necessarily be permanent. Opioids may also cause urinary retention in children.
  • Constipation
    Common causes include analgesia (particularly opioids), dehydration and immobility. Poor diet may be contributing and dietary advice and NG feeding manipulation may be appropriate. See section on constipation.
  • Environmental irritation
    Too hot / cold, bright light, noise, lack of comforting stimuli, e.g. touch, music
  • Fear/ anxiety
    Discuss directly with the child if possible/ appropriate. Explanations and reassurance are the most helpful if feasible. Anxiolytics may also be useful but are not always necessary
  • Gastro-oesophageal reflux / indigestion
    Common in children with neurometabolic or neurodisability conditions and in children taking steroids, NSAIDs or undergoing chemotherapy/ radiotherapy that may make them susceptible to oesophageal candidiasis. See section on reflux
  • Cerebral causes
    Raised intracranial pressure especially in children with VP shunts. VP shunting is surgery to relieve increased pressure inside the skull due to excess CSF (hydrocephalus)
    • Could the shunt be blocked?
    • Intracranial bleed?
    • Subclinical or clinical fitting?
  • History and careful neurological examination may help with this diagnosis. Consider whether investigation is in the best interests of the child and whether it will influence management before instigating. Optimise treatments for epilepsy or myoclonus.
  • Invasive tests should be avoided. A pulse oximeter may confirm the diagnosis but is only helpful if you know what the child’s usual reading is and should not be interpreted in isolation. A trial of low dose oxygen may be the most helpful diagnostic tool. Obstructive sleep apnoea may be a cause warranting investigation with sleep studies and CO2 levels IF appropriate. If this is a potential concern discuss with the child’s general or community paediatrician
  • Medication
    Check drug chart for medication which may increase agitation
  • Nausea
    Check history and drug chart for likely causes and treat/ adjust medication as appropriate
  • Positioning
    The child may simply not be comfortable, and this may be frustrating for a child unable to turn himself. It may be worth adjusting position/ turning if you suspect this may be a problem. Assess the child's chair as they may have grown out of it or their posture may have altered with time
  • Sepsis
    Check temperature and examine for source of infection: upper and lower respiratory tract, ears, wounds, CVAD lines and bladder are possible sites to consider. Swab / send samples as appropriate but first consider whether doing so will affect your management. Discuss whether treatment is appropriate/desirable with the child, parents and other professional involved. Sometimes treatment may be appropriate even in the terminal phase to control unpleasant symptoms
    See section on infection
  • Uncontrolled pain
    Check history and fully examine before excluding pain. In children unable to communicate ask parents and carers how their child expresses pain. Use a validated pain assessment tool and use it regularly to establish cause/triggers and effects of interventions. Choose a tool appropriate for each individual child according to the developmental level and personal preferences of the child.
Pharmacological Management of Agitation

Titrate the dose of medication around the individual child’s response. However, if there is no clinical improvement then it is important to reconsider the causes of the agitation and seek help.


Injection: 10mg in 2mL; 10mg in 5mL.

Injection may be diluted if required, in sodium chloride 0.9% or glucose 5%. Injection can be used for buccal, oral or rectal administration. Oral syrup and Buccal liquid. (Epistatus® is a sweetened, sugar free midazolam formulation containing 10mg/ml; it is packed in 5ml bottles with 4 x 1ml oral syringes and instructions for use.)

By oral or gastrostomy administration for anxiety or sedation:
1month – 18 years: 500µg/kg (maximum 20mg) as a single dose.

Buccal doses for acute anxiety:
Any age: 100µg/kg as a single dose (maximum initial dose5 mg).
By SC or IV infusion over 24 hours for anxiety:
Dosages of 30-50% of terminal seizure control dose can be used to control anxiety, terminal agitation and terminal breathlessness.

Contraindications and warnings: caution with pulmonary disease, hepatic and renal dysfunction (reduce dose), severe fluid /electrolyte imbalance and congestive cardiac failure. Avoid rapid withdrawal after prolonged treatment.

Licence: licensed for sedation in intensive care and for induction of anaesthesia in children > 7 yr. Other routes and indications not licensed.


Tablets: 1mg (scored), 2.5mg Oral suspension: only available as ‘special’
Injection: 4mg in 1mL, 1mL ampoule

Dose (sublingual, oral)

< 2 yrs: 25µg/kg b.d.- t.d.s.
2–5 yrs: 0.5mg b.d. - t.d.s.
6–10 yrs:0.75mg t.d.s.
11–14 yrs: 1mg t.d.s.
15–18 yrs: 1–2mg t.d.s.

Well absorbed sublingually (good for panic attacks as has fast action) and parent/child has control.

Injection form can also be given sublingually.

Contraindications and warnings: severe pulmonary disease, sleep apnoea, coma, and CNS depression. Caution in hepatic and renal failure.

Licence: tablets are licensed in children >5yrs as premedication. Injection not licensed in children <12yr except for treatment of status epilepticus.


Tablets: 2mg, 5mg, 10mg.
Oral solution: 2mg in 5mL and 5mg in 5mL. Injection (solution and emulsion): 5mg in 1mL.
Suppositories: 10mg.
Rectal tubes: 2mg in 1mL: 2.5mg tube, 5mg tube, 10mg tube.

Dose (oral)

2–12 years: 1-2mg 3 times daily,
12–18 years: initial dose of 2mg 3 times daily increasing as necessary and as tolerated to a maximum of 10 mg 3 times daily.

Licence: rectal preparation is licensed for use in children >1yr with severe agitation. Other forms not licensed for agitation per se.


Tablets: 0.5mg, 1.5mg, 5mg, 10mg, 20mg. Capsules: 500µg
Oral liquid: 1mg in 1mL, 2mg in 1mL, 1mg in 5mL (special)
Injection: 5mg in 1mL 1mL ampoule; 10mg in 1mL and 2mL ampoules.

Dose (oral)

1 month–12 years: initial dose of 50µg/kg/24 hours (initial maximum 3mg/24hrs) in divided doses. The dose may be increased as necessary to a maximum of 170µg/kg/24 hours in divided doses

12-18 years: 10–20µg/kg every 8–12 hours; maximum 10 mg/day.

Contraindications and warnings: bone marrow suppression, phaeochromocytoma.

Licence: licensed for use in children.


Tablets: 25mg, (6mg available, Levinan®) Susp. 6.25mg/5mL, 25mg/5mL
Injection: 25mg in 1mL, 1mL ampoule.

Dose (oral)

Child 2–12 years: initial dose 50-100µg/kg given once or twice daily. This dose may be increased as necessary and as tolerated not to exceed 1mg/kg/dose (or maximum of 25mg/dose) given once or twice daily. , Child 12-18 years: initial dose 3mg once or twice daily. This dose may be increased as necessary and as tolerated to a maximum of 25mg once or twice daily.

Dose (SCIV continuous infusion)

1 year–12 years: initial dose of 350µg/kg/24 hours (maximum initial dose 12.5 mg), increasing as necessary up to 3mg/kg/24 hours, 12–18 years: initial dose of 12.5 mg/24 hours increasing as necessary up to 200mg/24 hours.

Sedative. No experience in very small children.

Edition/Revision: 4.0
Created 20 Oct 2016
Validated 22 Oct 2016 by Ian Back
Last modified 15 Apr 2024
Mon 15 Apr 2024 19:56:01 GMT +0100 (DST)
Last modified 15 Apr 2024