Best interests decision making explored

In a recent decision, the High Court was asked to determine whether it was in the best interests of a 20-day-old baby boy (anonymised as Baby J) to continue receiving mechanical ventilation and intensive care following a catastrophic brain injury sustained at birth. The decision re-affirmed the centrality of the ‘best interests’ principle to withdrawing life sustaining treatment.

Background

Baby J suffered a catastrophic hypoxic-ischaemic brain injury at birth after his mother suffered a cardiac arrest at 32 weeks, leading to Baby J being deprived of oxygen for approximately 40 minutes until an emergency C section was facilitated. Baby J was subsequently diagnosed with Hypoxic-Ischaemic Encephalopathy (HIE grade 3) which was confirmed by MRI and EEG testing. Clinicians concluded that Baby J’s condition was irreversible and associated with profound neurological impairment, including the likelihood of sensory deprivation, organ dysfunction, and lifelong dependency. 

Baby J’s mother also suffered hypoxic brain damage during the cardiac arrest and was subsequently diagnosed with post-traumatic amnesia. Medical assessments confirmed she lacked capacity to make decisions about Baby J’s treatment or participate meaningfully in proceedings. 
The NHS Foundation Trust responsible for Baby’s J’s care applied to the court for a declaration that continued ventilation was not in his best interests.

Legal issues

There were two predominant legal issues to consider:

1. Whether the continued mechanical ventilation and intensive care treatment was in Baby J’s best interests
2. Whether proceedings should be adjourned to allow time for the mother’s recovery and for the Guardian to gather further information

The Court’s decision

The Court made declarations sought by the trust that:

1. It was not in Baby J’s best interests to continue on medical ventilation and intensive care, and it was no longer lawful for clinicians to provide this medical treatment
2. The previous application to adjourn the hearing was denied

The Court consulted all parties to make their decision, as well as wider family members (including his maternal grandparents and mother’s partner) and medical professionals (including Baby J’s consultant neonatologist, an independent doctor, the wider medical team, and the consultant of Baby J’s mother). The medical professionals and family members were unanimous in their opinion that it was in Baby J’s best interests to withdraw ventilation. They agreed that even if Baby J were to survive, the profound long-term consequences of his diagnosis would leave him with no quality of life and severe life-long disabilities would follow.

During the hearing, the court confirmed that the starting point of the decision was to weigh heavily in the best interests balance of preserving Baby J’s life. 

The Court then applied the Aintree test. Although acknowledging the difficulty of imagining Baby J’s perspective, the Court weighed the burdens of treatment against its benefits. The evidence showed that Baby J experienced pain and discomfort from suctioning, blood tests, and the breathing tube. His prognosis was bleak: a life of profound disability, likely without sensory awareness or the ability to experience comfort or connection.

The Honourable Mr Justice McKendrick concluded:

"Given the unchallenged evidence and the prognosis that follows, mechanical ventilation traps Baby J in a life without stimulation or pleasure whilst permitting him to languish in pain and discomfort... This is a life devoid of quality. I agree with the Trust the treatment is futile and burdensome."

Comment

This case underscores the gravity and sensitivity of decisions to withdraw life-sustaining treatment. It demonstrates the centrality of the best interests principle when determining whether to withdraw life sustaining treatment. It also emphasises the importance of timely decision-making to prevent unnecessary suffering, especially where medical consensus indicates that continued treatment is futile. 

You can read the full judgment here.