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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
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