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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 paedpalcare@act.org.uk
•
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: info@act.org.uk
•
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: bookorders@who.int
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