In this section
Dyspnoea, the sensation of shortness of breath, is a relatively
common symptom in children receiving palliative care. It is often
accompanied by considerable anxiety in both the child and the
family. Dyspnoea is a subjective phenomenon and reported symptoms
may not match respiratory signs or pulmonary function tests. A
visual analogue scale may be a useful way of measuring dyspnoea and
monitoring the response to treatment.
Dyspnoea occurs in 40-65% of children with malignant conditions
®1,2,3 and may occur as a consequence of
The sudden development of dyspnoea, headache, swelling and
distension of the veins of the face, chest and upper limbs suggests
the development of superior vena caval obstruction. A paediatric
oncologist should be consulted immediately.
Children with neurodegenerative conditions may experience
dyspnoea as a consequence of
Initially hypoventilation may only be present during sleep
giving rise to symptoms such as irritability, nausea, headache and
daytime somnolence. Patients with these symptoms may benefit from
non-invasive ventilation overnight.
Admission to hospital with an episode of respiratory compromise
due to pulmonary infection (commonly complicated by lung collapse)
should prompt discussion of decision making options for this
episode. Recovery should be a time for reflection about the options
available for future episodes in the context of the child's quality
Children with cystic fibrosis (CF) experience progressive
impairment of pulmonary function and pancreatic malabsorption. The
condition is usually diagnosed in infancy and although, no cure
exists, a multitude of treatment strategies are available to
relieve symptoms and maximise longevity. These include chest
physiotherapy, antibiotics, pancreatic enzyme supplementation, and
attention to nutrition. The majority of children now survive to
adulthood with a median age of death of 31 years ®4. Insulin
dependent diabetes develops in 25% of patients who reach adulthood
®5. Other complications include pneumothoraces, haemoptysis,
hepatic cirrhosis, arthropathy and ileal obstruction.
In the context of gradual loss of lung function, there is
usually no clear transition to a totally palliative focus of care
in cystic fibrosis ®6. As with children with neurodegenerative
conditions, children admitted to hospital with a severe respiratory
exacebation may die during as a result of acute deterioration. More
commonly however, they recover, and return to their severely
compromised background respiratory state. Commonly, a mixed model
of care is adopted in which opiates, anxiolytics and increased
emotional and spiritual support is added to the day to day
When it is clear that someone is dying, enzyme replacement
remains appropriate for symptomatic control of malabsorption and
modified physiotherapyis generally useful in managing respiratory
symptoms. The decision whether to use antibiotics or not should be
consistent with the goals of care.
The first principle of management is to identify and
treat any underlying cause of dyspnoea. This may not
always be possible or appropriate in the setting of palliative care
and needs to be considered on an individual basis. Investigation
and treatment are generally indicated for children who are
otherwise enjoying a reasonable quality of life, providing these
measures do not bring significant burdens in the form of pain or
lengthy hospital admission. Even quite invasive measures such as
drainage of a pleural effusion can be undertaken if the benefits to
the child outweigh the burdens given the stage of illness. There
may be a role for palliative radiotherapy to reduce the effect of
tumour load in children with malignant disease. If bronchospasm is
present, bronchodilators may be helpful. Steroids can also be
useful in alleviating bronchospasm and may reduce inflammation
around pulmonary metastases. They should not be used for long
periods however, as side effects such as weight gain and
behavioural change can be problematic even in children needing
Some causes of dyspnoea respond to simple measures. Anxious
children will benefit from the presence of confident and reassuring
family members and staff. Breathing exercises (eg. long, slow
breaths), appropriate positioning (ie. upright)
and relaxation training may also be helpful.
Opioids are very effective in treating dyspnoea although there
may be no effect on respiratory rate, effort, oxygenation or pC02.
They can be commenced at a low dose (half the usual starting dose)
and increased as required to reduce symptoms (eg. for a child aged
over six months, start with oral morphine 0.1-0.25
mg/kg/dose q4h orally). ®7 Nebulised morphine may be
effective in some patients with dyspnoea. It has the advantage of
being rapidly effective and produces fewer systemic side effects.
The starting dose is 2.5-5 mg morphine (injectable
solution) via nebulizer 4/24. ®8 Caution is needed in
using nebulised morphine as it can cause bronchospasm in some
Many children will be frightened by dyspnoea.
Benzodiazepines may be helpful in conjunction with
such measures as relaxation training and guided imagery.
Oxygen is useful in alleviating dyspnoea in
some children and can be provided in the home where necessary. The
development of headache, nausea, or confusion in the setting of
dyspnoea may indicate hypoxia. These symptoms are also consistent
with Co2 retention. Oximetry can be used to confirm this in the
hospital setting although some children with normal oxygenation may
also benefit from oxygen. Many children will use it only
intermittently. Use of a portable oxygen concentrator rather than
oxygen tanks, at home, is recommended, although the flow rate is
limited to a max of 5 L/min via a single concentrator. Two
concentrators can be used in parallel to provide a greater flow
rate. Concentrators are quite noisy and the use of a long length of
oxygen tubing will allow the child some mobility within the house
and facilitate the placement of the concentrator away from the
living areas of the house. The family should also have at their
disposal, portable oxygen tanks that can be used outside the home
for short periods. A size "C" cylinder will last 2-3 hours at a
flow rate of 2L/min.
A symptom that frequently accompanies dyspnoea is cough. Cough
can result from irritation to the upper or lower airway, pleura,
pericardium and diaphragm. Tenacious or thick secretions can be
loosened with nebulised saline thus allowing the child to remove
them by coughing. Physiotherapy can also be helpful. For upper
airway irritation, it is worth seeing whether cough lozenges or a
simple cough linctus can sooth the throat and alleviate a dry,
irritating cough. Bronchospasm may also contribute to cough and
treatment with salbutamol may be helpful.
Children with a persistent dry cough may benefit from opioids
which work via their action on the central nervous system.
Eg. For children aged over 2 years codeine orally
0.25-0.5mg/kg/dose q6-8h ®7
Morphine can also be used.
Children already receiving morphine for analgesia may need the dose
Significant coughing can be a very distressing symptom for
children. Opioids are generally effective at reducing coughing and
the distress associated with coughing.
The authors gratefully acknowledge the assistance of Professor
Susan Sawyer, Royal Children's Hospital, Melbourne in reviewing
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