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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 parents …
Funding The author has not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests I am a chair of our hospital’s clinical ethics committee and am regularly and frequently approached by clinicians seeking to ‘bring’ cases to the CEC.
Patient consent for publication Not required.
Provenance and peer review Commissioned; internally peer reviewed.