Clinical Guidelines

This project received grant funding from the Australian Government Department of Health, Disability and Ageing.

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 from the PSNZ New Zealand Paediatric Palliative Care Clinical Network Clinical Guidelines.

Definition 1, 2, 3

Breathlessness is described as the subjective feeling of disturbed or difficulty breathing. It can also be called “dyspnoea” or “shortness of breath” and is relatively common in children with life limiting conditions. This symptom frequently occurs alongside other symptoms and is commonly associated with anxiety for the child and family. It often needs rapid and assertive management.

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


This document is only valid for the day on which it is accessed. Please read our disclaimer.

Goals of management

  • Identify and manage likely causes of breathlessness.
  • Reduce the subjective sensation (feeling) that breathing has become unpleasant.
  • Relieve anxiety of child and family associated with breathlessness.

Causes and provoking factors

Causes of breathlessness 1,2

Respiratory Non-respiratory
  • Airway obstruction: lower or upper
  • Chest wall deformity (e.g. severe scoliosis)
  • Rib fractures (with or without pneumothorax)
  • Respiratory muscle dysfunction, including generalised muscle weakness (e.g. spinal muscular atrophy) or phrenic nerve palsy
  • Pleural effusion: inflammatory, cardiac, hypoalbuminaemia
  • Atelectasis and mucous plugging
  • Asthma
  • Bronchiectasis
  • Infection
  • Pneumothorax
  • Pulmonary oedema
  • Interstitial lung disease (e.g. idiopathic, chemotherapy, radiation)
  • Pulmonary embolism
  • Pulmonary hypertension
  • Mediastinal disease
  • Superior vena cava obstruction
  • Cardiac disease / congenital heart disease
  • Metabolic causes including acidosis
  • Cerebral causes including raised intracranial pressure
  • Elevated diaphragm (e.g., ascites or
    abdominal distension)
  • Anaemia
  • Anxiety
  • Pain
  • Spiritual or existential distress

Clinical features 1-6

  • A subjective sensation that breathing has become unpleasant.
  • Relatively common symptom and can be due to a combination of factors.
  • Degree of breathlessness may or may not match observed increased respiratory effort.
  • Associated with distress and anxiety for the child and family.
  • The sensation of breathlessness may decrease if the child becomes less alert, the breathing pattern can also change.
  • At times, breathlessness may be so severe as to require immediate action.

Recommendations 1-11

  • Discuss with the child and family the history of the symptoms, the impact of this breathlessness and what words they use to describe it.
  • Establish and support the family’s current preferences and expectations in management wherever possible.
  • Identify, assess and manage the causes and provoking factors.
  • Ask about breathlessness as this is subjective and may be difficult to assess in the non-verbal child.
  • Consider the benefits and burdens of each treatment, and their impact on quality of life.
  • Consult with relevant specialist paediatrician(s) and health care professionals.
  • Ensure that plans are well communicated, that there is clear next level of management, and provide education to the child and family in how to manage care according to their plan.

Non-pharmacological management 1-6, 8-11

Work with the child and family to;

  • Manage care in a calm reassuring manner.
  • Provide uninterrupted direct contact with parent.
  • Consider environmental factors, the room may need cooling, humidifying, noise reduction, increase airflow.
  • Position comfortably. Consider therapist assessment to optimise positioning and comfort-this may include a more supported upright posture.
  • Provide fresh air and a fan, this may include a handheld fan.
  • Keep mouth and lips moist.
  • Manage secretions with positioning on side, consider gentle suction, chest physiotherapy or medications.
  • Consider reducing the use of artificial fluids that may contribute to fluid overload, this can be common at end of life.
  • Provide psychological, cultural and emotional support.
  • Offer spiritual and existential support.
  • Consider using breathing/relaxation techniques, guided imagery and hypnotherapy.

Respiratory Support 1-7

Non-invasive ventilation (NIV)

  • Some children may benefit from non-invasive ventilation (NIV) which may assist managing a reversible cause of respiratory dysfunction. Some children may not benefit from NIV.
  • Consider how NIV could impact quality-of-life both immediately and longer term.
  • Ensure that the goals of therapy are carefully considered across specialty teams with the child and family.
  • Continual review is required.
  • NIV includes High flow or continuous positive pressure ventilation (CPAP) or Bilevel positive airway pressure (BiPAP). Some children may already have this support.
  • Consider what is possible at home.
  • Consider impact of equipment on facial comfort and ability to communicate.

Oxygen therapy

  • May be helpful for the sensation of breathlessness in a few children.
  • Oxygen can be delivered via nasal prongs, face mask, wafting, or added to NIV.
  • Titrate to comfort rather than targeting at specific oxygen saturation.
  • Consider if monitoring is needed or if clinical assessment is adequate.

Pharmacological management 1-6, 8, 9

  • Work with the child and family about their expectations and preferences.
  • Where the symptom persists and is a significant burden, consider consultation with the specialist Palliative Care Services and/or the Respiratory team for evaluation and guidance whether other medications may be helpful.
  • In neonates, start at the lower end of the dose ranges and consider lower end of dosing interval.

Principles of Prescribing 12

  • 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.

Table 1. Dosing information 1,9

Note: intranasal (IN), intravenous (IV), per oral (PO), subcutaneous (SC), sublingual (SL), when required (PRN)

Doses recommended are for opioid and benzodiazepine naive patients.

Drug Dosing Notes
First Line
Morphine (immediate release) PO:
<1 month: 0.02-0.05 mg/kg/dose Q6-8h prn
1-6 months: 0.05-0.1 mg/kg/dose Q4-6h prn
>6 months: 0.1-0.2 mg/kg/dose Q4h prn

SC / IV:
<1 month: 0.02 mg/kg/dose Q6-8h prn
1-6 months: 0.025 – 0.05 mg/kg/dose Q4-6h prn
>6 months: 0.05–0.1 mg/kg/ dose Q4h prn

(30-50% of the dose used for pain)

Opioids moderate the reflexive drive to breathe and decrease the patient awareness of breathlessness. Work of breathing may remain similar.

Suitable for neonates.

Consider controlled release if PO route available and multiple PRN doses needed. Only suitable for children that can swallow tablets. Continue to give PRN doses.

Morphine (continuous infusion)
 		SC infusion:

<1-6 months: 0.12 mg/kg/24hrs
>6 months: 0.24 mg/kg/24hrs

 Consider continuous infusion if frequent stat doses have been used.

Breakthrough (stat) doses can also be given as above.

Suitable for neonates.

Second Line
Midazolam Buccal / IN:
0.3 mg/kg stat (max 10 mg)
Neonates; 0.1-0.3 mg/kg stat
IV / SC:
0.025–0.05 mg/kg/dose Q1h prn 		Plastic ampoules can be used buccally and intranasally.

Can be used with Morphine.

Suitable for neonates.

Clonazepam
(Alternative to Midazolam) 		PO/SL:
<10yrs: 0.01-0.05 mg/kg/day divided in 2 or 3 doses
>10 yrs: 0.5 mg/dose Q8-12h 		Longer duration than Midazolam, can be used for background control.

Prescribe oral liquid as number of drops and mg to reduce errors
(1 drop contains 0.1 mg)

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 twelve guidelines included sections on dyspnoea, also known as shortness of breath or breathlessness, including 2 guidelines which detail neonatal considerations. 1, 9

Recommendations on treatment directed at the many causes and treatment based on clinical experience and observation are given. Each guideline differs in which causes and treatments are covered. Recommendations for empirical treatment such as non-pharmacological management, use of opioids and benzodiazepines are generally in agreement across the guidelines.

Covering the large range of causes and specific treatment is beyond the scope of this guideline. Instead, the principles of treatment and recommendations for management are included.

The methodology for these guidelines can be read here.

  1. A Practical Guide to Palliative Care in Paediatrics (4th edn); Paediatric Palliative Care Australia New Zealand, 2023
  2. NVK Dutch Association of Paediatrics Guidelines, Pallialine, 2022; Dyspnea. https://palliaweb.nl/richtlijnen-palliatieve-zorg/richtlijn/palliatieve-zorg-voor-kinderen/dyspneu
  3. A Really Practical handbook of Children’s Palliative Care, J. Amery, Lulu Publishing Services, 2016
  4. Hain, R., Goldman, A., Rapoport, A., & Meiring, M. (2021). Oxford Textbook of Palliative Care for Children (Third edition). Oxford University Press, Incorporated.
  5. Wolfe, J., Hinds, P. S., & Sourkes, B. M. (2022). Interdisciplinary Pediatric Palliative Care (Second edition). Oxford University Press, Incorporated.
  6. S.S.Jassal (2022) Basic Symptom Control in Paediatric Palliative Care (Tenth edition) Together for Short lives.
  7. Chawla, J., Edwards, E. A., Griffiths, A. L., Nixon, G. M., Suresh, S., Twiss, J., Vandeleur, M., Waters, K. A., Wilson, A. C., Wilson, S., & Tai, A. (2021). Ventilatory support at home for children: A joint position paper from the Thoracic Society of Australia and New Zealand/Australasian Sleep Association. Respirology (Carlton, Vic.), 26(10), 920–937. https://doi.org/10.1111/resp.14121
  8. Di Pede, C., Agosto, C., De Tommasi, V., De Gregorio, A., & Benini, F. (2018). Symptom management and psychological support for families are the cornerstones of end‐of‐life care for children with spinal muscular atrophy type 1. ACTA PAEDIATRICA, 107(1), 140–144. https://doi.org/10.1111/apa.14086
  9. Garten, L., & von der Hude, K. (2022). Palliative Care in the Delivery Room: Challenges and Recommendations. Children (Basel), 10(1), 15-. https://doi.org/10.3390/children10010015
  10. Lafond, D. A., Bowling, S., Fortkiewicz, J. M., Reggio, C., & Hinds, P. S. (2019). Integrating the Comfort TheoryTM into Pediatric Primary Palliative Care to Improve Access to Care. Journal of Hospice and Palliative Nursing, 21(5), 382–389. https://doi.org/10.1097/NJH.0000000000000538
  11. Stachelek, G. C., et al. (2019). “Palliative radiation oncology in pediatric patients.” Annals of Palliative Medicine 8(3)
  12. APPM Guidelines; Management of Agitation in Children and Young People in the Palliative Care Setting Authors: Sprinz C, Griffiths J, Villanueva G, 2023
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