In this section
(This section is reprinted with permission from "A Guide to
Paediatric Oncology Palliative Care" published by the Royal
Children's Hospital, Brisbane. Please see the Acknowledgements
section for further information regarding this
Parents often wish to know the changes that may occur to the
child as death approaches. The dying process is often referred to
as the terminal phase of illness. The body begins to shut down as
major organs fail to continue functioning. This is usually an
orderly and undramatic progressive series of physical changes which
are not medical emergencies requiring invasive interventions.
Parents need to know that these physical changes are a normal part
of the dying process. It is very important that families are well
supported at this time. If the child is dying at home 24-hour
support from experienced staff who they know and trust is
essential. Home visits by the GP, domiciliary nurse and oncology
liaison nurse, to assist with managing the child's symptoms are
greatly appreciated by the family. This is a very emotional and
difficult time for the whole family. It is important to listen to
parents concerns and fears and when necessary offer guidance and
advice on how best to provide comfort to their dying child.
Generally the child will spend an increasing amount of time
sleeping, in part due to progressive disease and changes in the
body's metabolism but this may also be due to progressive anaemia
or sedation from opioids required for pain relief.
Some children remain alert and responsive until the moment of
death. Others may become confused, semiconscious and unconscious
for several hours or days. Restlessness and agitation during the
terminal phase is not uncommon and may be due to increasing pain,
hypoxia, nausea, fear and anxiety. Agitation may be the child's
only way of communicating distress. A calm peaceful environment and
the presence of parents and family will assist in relieving the
child's anxiety. Speech may become increasingly difficult to
understand and words confused. Even though the child may not be
able to communicate, they may be aware of people around them.
Hearing is the last sense to be lost and the family should be
encouraged to talk to the dying child ®1. They may like to play
their child's favourite music, read stories or just sit with and
touch their child so the child knows they are not alone.
These measures will assist in relieving anxiety, however
agitation and restlessness may continue if the cause is due to
pain, hypoxia, nausea or metabolic disturbances. Pain relief should
be increased and this may be all that is required. If agitation
continues additional drugs may be needed. Treatment is directed at
inducing sedation. At this stage oral medications may not be
tolerated and alternative routes of medication are essential.
Rectal diazepam given regularly will settle the child and relieve
restlessness. Clonazepam and chlorpromazine can also be
A continuous subcutaneous infusion of a combination of drugs is
simple to commence and is well tolerated by most children. A
continuous subcutaneous infusion of morphine and midazolam in a
syringe driver is effective in controlling pain, agitation and
restlessness. A subcutaneous cannula with a side injection port
should be used when starting the infusion; this enables bolus doses
of medication to be given if required. If the child is at home, the
domiciliary nurse or oncology liaison nurse can commence the
For the child dying at home it is important that their treating
hospital has dispensed a home care pack containing drugs that may
be required in the terminal phase of care. This ensures drugs are
available in the home if and when the child requires them. Without
a home care pack there may be a considerable delay in getting drugs
required for symptom relief.
If bolus doses of drugs are needed for breakthrough pain or
increasing irritability, parents are generally prepared to
administer bolus doses of morphine or midazolam. Doses of
medication should be recorded for parents on a treatment sheet and
drugs already drawn up in the fridge. Occasionally haloperidol
is required when the benzodiazepines are unsuccessful. Regular
monitoring of effectiveness of medication is essential. Additional
drugs can be added to the syringe driver if needed. Morphine,
hyoscine, haloperidol, metoclopramide and midazolam are all
compatible and can be combined to be delivered as a subcutaneous
infusion. Precipitation of drugs may occasionally occur if high
doses are required.
Excessive secretions or difficulty clearing pharyngeal
secretions will lead to noisy or "rattly" breathing. Generally this
occurs during the terminal phase of the child's illness and is
associated with diminished conscious state. It can also be
problematic for children with neurodegenerative diseases or
brainstem lesions where swallowing is impaired. Positioning on the
side or slightly head down will allow some postural drainage and
this may be all that is required. Reassurance and explanation to
the family is essential as the noise of the gurgling can be very
distressing to the family, while the child is usually unaware and
untroubled by the noise and sensation.
Anticholinergic drugs can be used to reduce the production of
secretions and a portable suction machine at home may be of benefit
for children with chronic conditions or those who are unconscious.
Hyoscine hydrobromide can be administered subcutaneously as a bolus
(0.2-0.4mg every four hours) or infusion (0.6-1.2mg over 24 hours).
Glycopyrrolate (4-10micrograms/kg q6h; max 0.2mg) also has
anticholinergic properties and has a selective and prolonged effect
on salivary and sweat gland secretions. Glycopyrrolate can be
administered subcutaneously, intravenously and is also compatible
with morphine and midazolam. Consideration of the use of
glycopyrrolate should be given if there is an inadequate response
from hyoscine. Atropine can also be used but will lead to
bradycardia with repeated dosing.
There may be a relaxation of the muscles of the gastrointestinal
and urinary tracts resulting in incontinence of stool and urine. It
is important to discuss with parents this possibility and how they
wish to manage incontinence. If the child is close to death parents
are often reluctant for a catheter to be inserted to drain urine
and may choose to use incontinence pads or disposable incontinence
draw sheets. It is important for the family that their child's
dignity is respected. Disposable draw sheets are also useful for
The pupils of a dying person become fixed and dilated. The eyes
may become sunken or bulging and glazed. Eye secretions can be
removed with a warm damp cloth. If eyes are bulging which can occur
with neuroblastoma, a small damp bandage placed upon the eye may
provide some comfort.
As the heart slows and the heartbeat is irregular, circulation
of blood is decreased to the extremities. The child's hands, feet
and face may be cold, pale and cyanotic. The child may also sweat
profusely and feel damp to touch. Parents may wish to change their
child's clothes and keep them warm with a blanket or doona.
Respirations may be rapid, shallow and irregular. Respirations may
slow with periods of apnoea. This is called Cheyne-Stokes breathing
and is common in the last hours or days of life. This breathing
pattern is distressing for parents and siblings to witness and they
need reassurance that it is a normal part of the dying process and
that it is not distressing to the dying child.
It is important to inform parents that when death occurs the
child may again be incontinent of urine and stool. There may also
be ooze from the mouth and nose, particularly if they roll their
child to undress and wash them. Parents who are not prepared will
be distressed when this occurs.
In our efforts to achieve peaceful death for the child it is
essential that symptoms are closely monitored and there is ongoing
assessment of effectiveness of therapeutic interventions. Early
detection of symptoms and appropriate intervention is crucial if we
are to achieve a pain free and peaceful death for the child.
1. Martinson IM, Moldow DG. Home Care for Seriously Ill
Children: A Manual for Parents. Alexandria: Children's Hospice