It would be incorrect not to acknowledge the importance of non-medical aspects of palliative care and therefore this should be read alongside the sections “an overview” and “regional setups” of palliative care.
“Care of the dying extends far beyond pain and symptom management – important though those are.” [1,p1]
If you are reading this as a member of the community multi-disciplinary team (CMDT) please be reassured that you would never be left to palliate a child or young person with cancer alone – there will always be input and advice from the patient’s specialist centre team.
The main symptoms experienced in the children and young people age group are similar to adults:
- Pain
- Agitation and restlessness
- Seizures
- Nausea and vomiting
- Excessive secretions
- Breathing problems
- Fatigue
- Constipation
- Itching
- Urinary problems
- Nutrition
The most commonly used drugs are:
- Oromorph
- Diamorphine
- Midazolam
- Levomepromazine (Nozinan)
- Hyoscine patch
- Steroids
- Movicol
There are significant differences in the types of symptoms reported by professionals and families looking after children adolescents of cancer [2]. A symptom history should be actively sought and frequently updated. Polypharmacy in the palliative and end-of-life phase is not very common. In the majority of cases the list above includes most of the drugs the child or young person is prescribed in the end-of-life phase.
Children differ from adults in their body composition, absorption, distribution, metabolism and elimination of drugs [3]. Children also have a higher metabolic rate [4]. In paediatrics, drugs are prescribed as per body weight or surface area. In some cases doses are capped and in most cases the maximum adult dose should not be exceeded, however, palliative or end of life analgesia is an exception to this rule.
Children require and tolerate vast doses of morphine – doses often far exceed those seen in adult medicine. As advised in the BNFC (online), wherever possible, medicines should be prescribed within the terms of the product licence. However, it is acknowledged that many children and young people may require medicines that are not licensed for the paediatric age group [2].
The McKinley syringe driver is widely accepted as the device of choice for delivery of drugs in palliative care. This driver is very easy to use via the subcutaneous route and its universal use aids the staff involved in the cross-boundary and regional care of the palliative children and young people.
Various Paediatric Palliative Care Formularies have been developed; the most commonly used are listed below:
Association for Paediatric Palliative Medicine Master Formulary
Together for Short Lives Basic Symptom Control in Paediatric Palliative Care
CCLG publishes a booklet for parents and families entitled 'Managing symptoms at home'. It has been written to give parents information about commonly occurring symptoms, their causes, available treatments and, most importantly, suggestions for simple things that they can do at home to help their child.
References
[1] Twycross R, (1997) Symptom Management in Advanced Cancer (2nd Ed.). Abingdon: Radcliffe Medical Press
[2] Woofe J, Grier HE, Klar N, Levin SB, Ellenbrogen JM, Salem-Schatz S, Emanuel EJ Weeks JC. (2000) Symptoms and suffering at the end of life in children with cancer The New England Journal of Medicine 342:326-333
[3] Greenstein B (2006) Trounce’s Clinical Pharmacology for Nurses (17th Ed.) London: Churchill Livingston
[4] British National Formulary Date Royal Pharmaceutical Society