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Paediatric
Palliative Care
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. The aim of the EAPC Children’s
Task Force is firstly to find ways of bringing together existing
children’s palliative care services across Europe, and
secondly to bring them into contact with those working in
the adult specialty. Our intention is to help develop for
dying children in Europe services that are appropriately grounded
in paediatrics, but also informed by palliative medicine.
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
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