Advanced Care Planning for Children with Severe Neurodisability: the Role of Paediatric Respiratory Clinic

Background: Children with severe neurological impairment have high morbidity and mortality due to chronic respiratory failure and are often referred to paediatric respiratory clinic. Advanced care planning (ACP) is an essential component of care for children with life limiting conditions and palliative care in children is a recognised unmet need.

Objective: The aim of this retrospective study was to assess if ACP is part of the standard care provided in our paediatric respiratory clinic. Methods: We reviewed the notes of 67 children with severe complex neurodisability under follow up with our multi-disciplinary paediatric respiratory clinic over the past 8 years.

Results: The majority of children (65/67) were classed as GMFCS IV and V, 43/67 had a diagnosis of cerebral palsy. There was a high number of co-morbidities such as epilepsy (66%), enterostomy feeds (98%), scoliosis (45%) and dystonia (18%). 39% had a history of emergency admission to paediatric intensive care unit (PICU). 5 deaths occurred during this period. End of life discussions during outpatient consultations were documented in 37/67 patients. These more commonly happened for patients with a history of PICU admission (OR 2.75, CI 95% 0.98-7.7). The likelihood of an ACP being put in place was higher in patients with a history of PICU admission (OR 2.62, CI 95% 0.89-7.63), in patients were a paediatric hospice was involved in their care (OR 2.92, CI 95% 0.84-10.1) and in patients with 3 or more co-morbidities (OR 4.22, CI 95% 0.87-20.57).

Conclusion: End of life decision making in children is a complex process and timely planning is vital. The paediatric respiratory clinic has an important role to play with ACP in children with severe complex needs.