Introduction ACP for children with life-limiting illnesses presents one of the most complex and ethically challenging scenarios in medicine. Currently most children who die, do so in hospital and most commonly on PICU, despite growing evidence that family preferences are for end-of-life care at home.
Aims and Methods To investigate current practice related to ACP on PICU, and how this might be improved. A qualitative study was carried out in a PICU setting. Semi-structured interviews were conducted and thematic content analysis carried out on transcriptions.
Results Eight consultants and six senior nurses. Themes emerged around ‘the significance of the death of a child’. ACP is a dynamic, MDT process which is essential to improve care for children with life-limiting conditions. It is currently lacking. As a result, children endure intensive care which is ultimately futile. The GP has an increasingly important role.
Conclusions ACP is needed for paediatric patients with life-limiting conditions to improve care, avoid potentially harmful interventions and deliver choice to families. The palliative care population in paediatrics represent a complex group with a diverse range of diagnoses, family situation and multicultural differences. The numbers of children and young people with palliative care needs is rising, and with advances in paediatric medicine the mortality rate is falling. Some are outliving their own life expectancies and transitioning in to adult services, presenting a new challenge for adult palliative care services. There is opportunity for knowledge to be shared between adult and paediatric practitioners in this increasingly relevant area.
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