Abstract
BackgroundChildren dying of a life threatening disease suffer a great deal at the end of life. Symptom control is often unsatisfactory, partly because many caregivers are simply not familiar with paediatric palliative care. To ensure that a child with a life-threatening condition receives high quality palliative care, clinical practice guidelines are needed. The aim of this study is to improve palliative care for children by making high quality care recommendations to recognize and relieve symptoms in paediatric palliative care.MethodsAn extensive search was performed for guidelines and systematic reviews on paediatric palliative care up to year 2011. An expert panel combined the evidence with consensus to form recommendations on the treatment of symptoms in paediatric palliative care.ResultsWe appraised 21 guidelines and identified 693 potentially eligible articles of which four met our inclusion criteria. None gave recommendations on the treatment of symptoms in paediatric palliative care. Two textbooks and an adult palliative care website were eventually our main sources of evidence.ConclusionHardly any evidence is available for the treatment of symptoms in paediatric palliative care. By combining evidence for adult palliative care and the sparse evidence for paediatric palliative care with expert opinion we defined a unique set of high quality care recommendations to relieve symptoms and lessen the suffering of children in palliative care. These results are an important tool to educate caregivers on how to relieve symptoms in children in paediatric palliative care.Electronic supplementary materialThe online version of this article (doi:10.1186/s12904-015-0054-7) contains supplementary material, which is available to authorized users.
Highlights
Children dying of a life threatening disease suffer a great deal at the end of life
The American Academy of Paediatrics (AAP) has clearly stated that paediatric palliative care should be directed at the improvement of the quality of life of children dealing with a life-threatening condition and their families
Selection of topics According to the expert panel inventory the main symptoms during paediatric palliative care that need to be addressed in a paediatric palliative care guideline are, in alphabetical order: 1) anxiety and depression, 2) bleeding and anaemia, 3) coughing and rattling, 4) dyspnoea, 5)
Summary
Children dying of a life threatening disease suffer a great deal at the end of life. Symptom control is often unsatisfactory, partly because many caregivers are not familiar with paediatric palliative care. To ensure that a child with a life-threatening condition receives high quality palliative care, clinical practice guidelines are needed. The aim of this study is to improve palliative care for children by making high quality care recommendations to recognize and relieve symptoms in paediatric palliative care. Even more children are coping with life-threatening conditions [1] All these children need high quality palliative care. The American Academy of Paediatrics (AAP) has clearly stated that paediatric palliative care should be directed at the improvement of the quality of life of children dealing with a life-threatening condition and their families. Palliative care should be aimed at the prevention and relief of suffering by early identification and treatment of symptoms of physical, psychosocial, or spiritual nature and should.
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