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Paediatric Palliative Care Speciality
The specialty of palliative care in children is very different from its adult counterpart. It is a much younger specialty, having begun to develop some twenty or thirty years after the adult specialty was becoming recognised. Perhaps this is because paediatrics has always tried to maintain the vision that palliative medicine strove to recapture in adults: holistic care which put patient and family at the centre of decision making.
In most countries, paediatric palliative care has evolved, not from adult palliative care, but from paediatrics itself. This is in keeping with the UN convention on the rights of the child, which insists that those working with children should first and foremost be trained in the care of children and young people. It is perhaps particularly important in palliative care: the more holistically one looks at a child, the less he or she resembles an adult.
One result is that the specialty does not focus on cancer, nor on distinct specialist inpatient units such as hospices. Although there are children’s hospices in many countries in Europe, and they are extremely important. The main emphasis is on developing services that can reach children wherever they are needed. The exact pattern of service development depends on the culture of each country. In the UK, most families wish their child to die at home and the responsibility of palliative care is to facilitate this. In countries where this is less acceptable, the focus may be on providing palliative care in hospital, school, orphanage or hospice.
The palliative phase in children is often much longer than in adults. Four categories of life-limiting conditions are recognised in childhood {ACT/RCPCH, A Guide to the Development of Children’s Palliative Care Services,1997; ACT/RCPCH, A Guide to the Development of Children’s Palliative Care Services 2nd edition,2003; http://www.act.org.uk}. Children with cancer account for perhaps one in three of those who need palliative care. The others will suffer conditions ranging from cerebral palsy and muscular dystrophy to mucopolysaccharidoses and neurodegenerative conditions. Whilst cancer in children, as in adults, usually ends in a recognisable palliative phase lasting weeks or months, most other conditions are more unpredictable in their prognosis and can persist for years or even decades. The paediatric specialty is therefore very different from the adult.
What has become increasingly clear over recent years, however, is that the paediatric specialty has a great deal to learn from what has already been achieved in the adult. Particularly in the field of symptom control, there is an increasing body of experience, expertise and published evidence underpinning the management of dying adults.
Dr Richard Hain
LATCH Senior Lecturer and Honorary Consultant in Paediatric Palliative Medicine
Department of Child Health
Wales College of Medicine
Cardiff University
Heath Park
Cardiff CF14 4XN
http://www.uwcm.ac.uk/study/medicine/child_health/research/palliative_care
PAEDIATRIC PALLIATIVE CARE – selected resource
Conquering your child’s chronic pain
by Lonnie Zeltzer and Christina Blackett Schlank
This book has been written by one of the pioneers and leading thinkers in the area of chronic pain in children. It is easy to read, and shows in a precise and scientific way , the clinical and psychological aspects of children’s chronic pain. It is written for the parents of children with chronic pain but is a very usefull tool for any healthcare worker, developping the different approaches to treatment. I highly recommend it.
Dr Chantal Wood
Unité de Traitement de la Douleur
Hôpital Robert Debré
48 Bd Serurier
75019 Paris
PAEDIATRIC PALLIATIVE CARE – selected resources
• Basic symptom control in paediatric palliative care 2005
The 2005 edition of Rainbow Children’s Hospice Guidelines: Basic symptom control in paediatric palliative care (written by Dr Satbir Singh Jassal) is now available as a free download on the ACT website: http://www.act.org.uk
The What’s New section gives details of upcoming conferences and you can also enter details of your service for inclusion in the International Directory of Children’s Palliative Care and Hospice Services now under development. Please visit http://www.act.org.uk
• The International Children’s Palliative Care Network (ICPCN) is a global network of children’s hospice and palliative care services: http://www.icpcn.org
• PaedPalCare – An international email discussion group for those working with children with life-limiting conditions. The group is hosted by ACT and currently has over 600 members across the world. To join the group send a blank email to
• Guide to the Development of Children’s Palliative Care Services – 2nd edition, a joint publication from ACT and the Royal College of Paediatrics and Child Health, reflects the many recent changes in children’s palliative care in the UK. The Guide is available to ACT members for £5 and to non-members for £10. Order via the ACT website at http://www.act.org.uk or mailto:
• Materials on paediatric palliative care.
IPPC – the Initiative for Pediatric Palliative Care – a consortium of organisations that work together to improve care and quality of life of children and families. It is an initiative of EDC’s Centre for Applied Ethics and Professional Practice (CAEP). Website offers some useful resources including quality improvement tools, videos and a curriculum which is under development. More resources are planned – you may have to register to download tools. Website: http://www.ippcweb.org
• Cancer Pain Relief and Palliative Care in Children, WHO, 1998
Available in English, French, Spanish and Italian.
To order: Email:
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