Clinical Guidelines

Date last published: July 2025

This clinical guideline is written for health care professionals who provide care to children with life-limiting diagnoses. It is intended to inform clinical practice through concise best practice advice. Please contact your Paediatric Palliative Care Service for further advice.

This guideline has been adapted with approval from the PSNZ New Zealand Paediatric Palliative Care Clinical Network Clinical Guidelines.

Definition 1

“Agitation or irritability is used to describe unpleasant psychological and physical arousal, often in circumstances in which the underlying etiology remains unclear. It refers to a complex set of symptoms and signs that are distressing to the patient, their family and caregivers. Agitation/ irritability may consist of psychological symptoms, physical symptoms and autonomic changes.”

In this clinical guideline the word “child” is used for brevity but refers to neonate, baby, child and/or adolescent. There are developmentally appropriate considerations for each. The word “parent” is used interchangeably to represent the legal guardian of the child.

Be SURE you practice these key actions;

Seek the voice of the child
Understand the family’s current goals of care and expectations
Recognise parent/carer role and expertise about their child
Explore shared decision making and care partnership


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Goals of management

  • Identify and manage likely causes of agitation.
  • Reduce distress of child and family.

Causes and provoking factors 1-5

  • Symptoms e.g. pain, breathlessness, nausea, constipation, urinary retention, muscle spasm, seizures, delirium, secretions, nutrition (food intolerance, gastro-oesophageal reflux), itch.
  • New issue e.g. infection, disease progression.
  • Metabolic disturbance e.g. hypoxia, hypercapnia, dehydration, anaemia, electrolyte imbalance.
  • Medication e.g. adverse effects, withdrawal, drug interactions.
  • Autonomic dysfunction i.e. sweating, flushing, pallor, retching, abdominal pain, arching, stiffening
  • Psychological distress such as fear, depression and anxiety.
  • Environmental factors, e.g. too hot, too cold, noise or positioning.
  • Spiritual or existential distress.

Clinical features 1-4

  • Agitation at the end of life is common.
  • May be the only way that the child can communicate distress.
  • This symptom is generally a combination of factors.

Recommendations 1-7

  • Discuss with the child and family the history of the symptoms, the impact of this agitation and what words they use to describe it.
  • Establish and support the family’s current preferences in management wherever possible.
  • Identify, assess and manage the causes and provoking factors.

Non-pharmacological management

Work with the child and family to;

  • Ensure that the child is safe from physical injury and that basic care needs are met.
  • Provide care in a calm, peaceful environment with a parent or trusted adult present.
  • Position comfortably and consider the temperature, sound, light and smells in the child’s room.
  • Encourage family to reassure child by using touch and talk to the child.
  • Provide family psychological, cultural and emotional support.
  • Use senses that are still intact such as hearing (e.g. play favourite music, read stories), and familiar smells (e.g. child’s own blanket or soft toy).
  • Introduce therapies as available, such as music, massage.
  • For neonates, use swaddling, tucking, skin-to-skin contact, non-nutritive sucking.
  • Offer spiritual and existential support.

Pharmacological management

Work with the child and family about their expectations and preferences keeping in mind that there is often a balance between alertness and complete control over agitation.

Where the symptom persists and is a significant burden, consider consultation with the specialist Palliative Care Services and/or the Psychiatry team for evaluation and guidance whether other psychotropic medications may be helpful. For longer term management, consider Gabapentin.

Principles of Prescribing 3

  • Start at lower end of dose range and titrate to effect.
  • Prescribe breakthrough (stat) doses to be given as needed.
  • Regularly review effectiveness.
  • Consider frequency, duration and route.
  • Consider broader cover if one medication is ineffective.

In neonates, start at the lower end of the dose ranges and consider lower end of dosing interval.

Table 1. Dosing information 2

Note: intranasal (IN), intravenous (IV), per oral (PO), per rectum (PR), subcutaneous (SC), sublingual (SL), when required (PRN)Doses recommended are for opioid and benzodiazepine naive patients.

Drug Dosing Notes
First Line
Midazolam Buccal/IN:
0.3 mg/kg stat (max dose 10 mg)
Neonates; 0.1-0.3 mg/kg stat
IV/SC:
0.025-0.05 mg/kg/dose Q1h prn
More immediate acting sedation
Suitable in neonates
Plastic ampoules can be used
buccally and intranasally
Midazolam
continuous infusion

(dosing for Agitation)
0.25-1.5 mg/kg/24hrs SC Consider continuous infusion if frequent
stat doses have been used
Breakthrough (stat) doses can also be
given as above
Note; Agitation dose is lower than Seizure dosing
Clonazepam
(alternative to Midazolam)
PO/SL
<10yrs: 0.01mg-0.05 mg/kg/day divided in 2 or 3 doses
>10yrs:0.5 mg/dose q8h-12h
Longer duration than Midazolam
Prescribe oral liquid as number of drops and mg to reduce errors (1 drop contains 0.1 mg)
Clonidine
(alternative first line or in addition to Midazolam/Clonazepam

PO/IV/SC:
0.5-4 microg/kg/dose Q6-8h
Suitable for neonates
Can lower blood pressure, consider impact on cardiac conditions
Second Line
Haloperidol PO/IV/SC:
0.01-0.02 mg/kg/dose Q8-12h (max dose 0.5 mg)
Can be administered as a continuous infusion
Children and adolescents may be at greater risk of acute dystonic reactions than adults
Chloral Hydrate PO/PR: 10–20 mg/kg/dose Q6h prn Suitable for neonates

Can have a more prolonged effect
Phenobarbital PO/IV/SC:
2.5-5 mg/kg/dose Q12-daily
Suitable for neonates

Note; Agitation dose is lower than
Seizure dosing

Note: Units for dosing are given as mg (milligrams) or micrograms (microg). Please check doses and units carefully before administering medication. Please check your local legislation and requirements for conditions related to prescriptions of medications. This information is designed to be a dose guide only. Each patient’s dose requirements may vary and should be adjusted based on the clinical situation. Readers should also refer to more comprehensive texts on palliative care for further information on drugs, indications, and side effects. (A Practical Guide to Palliative Care in Paediatrics)

In the literature search for this guideline there were seven guidelines discovered, including two neonatal guidelines. There are many causes of agitation, each with its own management. Each guideline differs in some aspects of management and the concordant recommendations are included in this guideline.

No references to supportive research evidence are given in source guidelines, and as such, the advice is likely to be recommended best practice based on clinical experience.

The methodology for these guidelines can be read here.

  1. Rasmussen, L. A. and M.-C. Grégoire (2015). “Challenging neurological symptoms in paediatric palliative care: An approach to symptom evaluation and management in children with neurological impairment.” Paediatrics & Child Health (1205-7088) 20(3): 159-165.
  2. A Practical Guide to Palliative Care in Paediatrics (4th edn); Paediatric Palliative Care Australia New Zealand, 2023
  3. APPM Guidelines; Management of Agitation in Children and Young People in the Palliative Care Setting Authors: Sprinz C, Griffiths J, Villanueva G, 2023
  4. NICE (National Institute for Health and Care Excellence) Guideline 2019; Agitation
  5. Together for Short Lives Basic Symptom Control in Paediatric Palliative Care (10th edn), 2022, p37; Agitation
  6. Cortezzo, D. E. and M. Meyer (2020). “Neonatal End-of-Life Symptom Management.” Frontiers in Pediatrics 8: 574121.
  7. Haug, S., et al. (2020). “End-of-Life Care for Neonates: Assessing and Addressing Pain and Distressing Symptoms.” Frontiers in Pediatrics 8: 574180.