In this section
The approach to the care of a dying child and their family
greatly influences the quality of their lives and the ability of
the parents and siblings to cope with the child s death. It is also
known that parents factor the perceived presence of pain into
decisions to limit treatment ®1. Most symptoms are readily amenable
to effective management. It is important however, to adopt an
individualised approach, taking into account the unique
circumstances of each child and family. Control of distressing
symptoms is important and access to medical and nursing expertise
must be available 24 hours a day regardless of the place of care.
Each symptom should be addressed in its own right with
consideration given to aetiology and the most effective therapy.
The most commonly encountered symptoms are pain, dyspnoea, nausea
and vomiting, constipation, dysphagia, agitation, and seizures ®2.
Symptoms however vary with diagnosis. In most cases it is possible
to anticipate either a worsening of current
symptoms or the development of new symptoms and it is vital that
this be planned for at the time of hospital discharge so that
appropriate medications and support are available in the home. Most
children will benefit from having oral and parenteral forms of
morphine available at home as well as midazolam. Other medications
should be provided according to anticipated symptomatology.
Families may feel comforted by having a written
plan detailing what to do and who to call if symptoms
become problematic. The administration of medications
subcutaneously (see Parenteral Infusions) is a useful alternative
to the oral route for children unable to tolerate the latter.
Websites:www.rch.unimelb.edu.au/anaes/www.tg.com.auwww.apon.orgRCH Children's Cancer Centrewww.iasp-pain.org
Goldman A. (Ed). Care of the dying child. Oxford University
Oakhill A. (Ed). The Supportive Care of the Child with Cancer.
Twycross A. et al. Paediatric Pain Management : A Multidisciplinary
Approach. Radcliffe 1998
Therapeutic Guidelines Palliative Care. Therapeutic Guidelines.
1. Meyer EC, Burns JP, Griffith JL, Truog RD. Parental
perspectives on end-of-life care in the paediatric intensive care
unit. Crit Care Med 2002; 30: 226-31.
2. Hunt AM. A survey of signs, symptoms and symptom control in 30
terminally ill children. Developmental Medicine and Child
Neurology, 1990; 32: 341-346.