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Manchester University NHS Trust v Fixsler and Others [2021] EWHC 1426

MacDonald J granted the Trust’s application for a declaration that it was not in the interests of two-year old Alta for life-sustaining treatment to be continued and refused her parents’ application to move her to a hospital in Israel.

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Background

Alta was born prematurely and suffered a severe hypoxic ischaemic brain injury during her birth. It was not disputed that she continues to exhibit the symptoms of a catastrophic brain injury which will result in her death at some point in the next two years or so. She has no conscious awareness, no positive interaction with her environment, cannot close her eyes and shows no visual attention or response to auditory stimulus; the judge described this as a "state of perpetual darkness and silence". Alta is mechanically ventilated via a tracheostomy and fed by feeding tube.

The treating clinicians considered that Alta experienced no pleasure but did experience pain consistently in response to the care she received. The Trust sought a declaration that it was contrary to her best interests for life-sustaining treatment to continue, and that it was in her best interests for a palliative care regime to be implemented.

Alta's parents, who are Chassidic Practising Jews and Israeli citizens who had moved to the UK in 2014, had sought rabbinical advice about their religious duties and obligations in the context of their daughter's situation and contended that it was contrary to those obligations "to be involved in bringing death closer". They did not accept that Alta displayed any signs that she was suffering from pain or discomfort, opposed the Trust's application and sought to take Alta to Israel for continued treatment and exploration of long-term ventilation at home in Israel. If the court concluded that it was in Alta's best interests for life sustaining treatment to be withdrawn they assured the court that they would respect its decision, but wanted that step to be taken in Israel.

The children's guardian, who carried out a careful analysis of the relevant factors (see §47) supported the Trust's application and did not consider that a transfer to Israel was in Alta's interests.

Law

The legal framework is well settled and is summarised at paragraphs 57-59. MacDonald J went on (see §60-72) to consider the arguments on the behalf of the parents not only that "in the assessment of overall best interests the law permits, and indeed requires, an appreciation on the part of the decision-maker about the cultural context of the individual about whom the decisions are being made" (which the judge had no difficulty in accepting) and further that the assessment of Alta's best interests should "start from the assumption that Alta would share the values of her parents, of her brother, and of her wider family and community" and "the best interests decision-making process can and must be framed within the Jewish belief system in this case." The latter contentions were rejected; the parents' belief system was simply one of the factors to be weighed in the balance.

Discussion and findings

• The key question is whether the response to stimuli over an extended period is consistent, rather than whether it is constant.

• Alta consistently exhibits whole body spasms in response to handling, care giving and treatment.

• The court preferred the opinion of the clinicians and Children's Guardian about Alta's response to handling to that of the parents, who had little contact with Alta in hospital.

• While a more difficult question, the court was satisfied on the balance of probabilities that Alta experiences pain and that experience is a significant burden to her.

• We cannot know the exact nature of her experience of pain because of her catastrophic brain injury

• She has no prospect of recovery and will remain ventilator dependent

• It is probable that her condition will deteriorate and her symptoms worsen, increasing the burden of pain she is bearing.

• The starting point is to consider the matter from the assumed point of view of Alta.

• Given the circumstances of her brain injury the court could not accept that she would share the values of her parents.

• Her point of view is more likely than not to be that continued life sustaining treatment would not be acceptable to her.

• The presumption in favour of taking all steps to preserve life is rebuttable and Alta's consistent pain weighs heavily in the balance.

• Alta has minimal or no awareness of her family or ability to take comfort or enjoyment from those who  love her.

• Refusing the declaration would confine her to a windowless room, her life sustained by machines "in a world she cannot meaningfully perceive or connect with."

• While parents' views may have particular value when they know their child well, Alta's parents have had little contact with her.

• The spiritual considerations urged on the court by her parents have to be considered alongside her consistent pain and other burdens of her condition and treatment.

• There was very little information about the treatment available in Israel.

• Even if there was a detailed proposal, the court would have to take into account the additional pain and discomfort resulting from Alta being transported

• There was no medical benefit to a transfer.

• From the perspective of the Jewish faith there are spiritual benefits in spending one's last days and being buried in Israel but these were outweighed in the court's secular analysis by the burdens, particularly as Alta's body could be taken to Israel for burial following her death in the UK.

• The parents assured the court that they would respect a decision that life sustaining treatment should not be continued, they might be placed under pressure to change their minds once Alta was in Israel.

Decision

With great sadness, the court made the declaration sought by the Trust and refused the parents' application to take Alta to Israel. The judge paid tribute to the dedication and care of the medical team who have treated Alta throughout her life.

Case summary by Gill Honeyman, Barrister, Coram Chambers

For full case, please see BAILII