TY - JOUR T1 - First judgement on clinical ethics committees? JF - Archives of Disease in Childhood JO - Arch Dis Child SP - 12 LP - 13 DO - 10.1136/archdischild-2020-320462 VL - 107 IS - 1 AU - Robert Wheeler Y1 - 2022/01/01 UR - http://adc.bmj.com/content/107/1/12.abstract N2 - In a recent case,1 a high court judge noted with ‘surprise and concern’ the lack of parental involvement in the deliberations of a hospital clinical ethics committee (CEC) regarding the options for the treatment of their daughter. This begs the question of the extent to which parents should be involved in the CEC and what role it fulfils.X was 9 years old. A healthy twin, she suffered haemolytic uraemic syndrome (HUS) as an infant followed by end-stage renal disease and subsequent transplantation. During her initial HUS, she acquired a severe brain injury, leading to cortical blindness, severe developmental delay, dystonia and four-limb cerebral palsy. Concurrently, she suffered gut ischaemia, remaining entirely dependent on parental nutrition. This led to ‘extremely’ difficult vascular access and lymphoedema. X had spent only 16 days at home in the past 7 years, such was her dependence on medical and specialist care.An application was made by the hospital to seek a declaration that both Optiflow non-invasive ventilation and readmission to an intensive care ward were contrary to X’s best interests. Supported by contrary expert evidence, the court found that X should be provided with Optiflow to alleviate symptoms of respiratory distress under certain circumstances and that the fluctuations in and unpredictability of X’s condition made it impossible to provide the declaration sought by the hospital. Six weeks prior to the hearing, X’s case had been discussed by the CEC.The court noted that the clinical ethics process ‘did not involve’ the … ER -