Will Alta Fixsler be allowed to die at home?

If your severely disabled two-year-old daughter is dying, should you be allowed to take her home for her final hours? It sounds like the answer should be a simple ‘yes’. But in the law surrounding parents, children and healthcare, nothing is that simple.

Alta Fixsler’s parents have been repeatedly thwarted in their efforts – as they see it – to do their best for their daughter. First, Manchester University NHS Foundation Trust sought to withdraw life-saving treatment for Alta. A judge subsequently agreed that it was in Alta's 'best interests for the treatment that is currently sustaining her precious life...to be withdrawn'. This was in spite of her parents seeking to take her to Israel for treatment. Alta has now effectively been banned from leaving the country.

Now, as her parents make their last request – to bring Alta home from hospital – the NHS Trust is again refusing permission. This time, they appeal not to law but to logistics. According to documents seen by The Spectator, the Trust claim that Alta’s family home is ‘inaccessible to a patient trolley and is, therefore, unsafe.’ Alta’s parents disagree.

Ivan Lewis, the former MP who served as health minister in the Blair and Brown governments, visited the house yesterday afternoon. He is not convinced by the reason given for refusing to allow Alta to die at home:

“‘There is no justification for the hospital’s flawed conclusion that Alta will not be safe at the family home. Having reviewed the evidence I am left with an uneasy feeling of discrimination against the Fixsler family because of their religious beliefs and determination to fight for the rights of their child.’

Lewis says there is ‘compelling independent evidence to support the parents' view that there is perfectly adequate access to the family home for the trolley which will carry Alta’.

In response to Lewis’s statement, a spokesperson for Manchester University NHS Foundation Trust said:

“‘We recognise that this is an incredibly difficult and distressing time for Alta’s family and we will continue to support them. Due to patient confidentiality, we are unable to comment further.’

The question could now go back to the courts if neither side backs down.

Throughout the dispute, the NHS Trust has maintained a line which has a certain internal logic. Alta is, the doctors believe, in pain; there is no chance of recovery; further care or treatment will only cause more pain; therefore her life support should be switched off.

Her parents have argued, on the other hand, that there is no watertight evidence of Alta being in pain; and that their beliefs, as Hasidic Jews who place a strong emphasis on the duty to preserve life, should be respected.

These kinds of cases aren’t simple. Parents do not have an absolute sovereignty over their children; in a secular society, religious convictions – even very strongly-held ones – can sometimes conflict with the law. But this case, like those of Charlie Gard and Alfie Evans, gives the strong impression that parents’ rights have been reduced practically to an afterthought. 

For one thing, the current law does not do enough to consider the importance of parents’ wishes. The High Court actually asserted that Alta might disagree with her parents: 

“‘It is more likely than not that Alta’s point of view would be that continued life sustaining treatment would not be acceptable to her.’ 

Alta's case provides further proof that parents have been shoved to the margins when it comes to medical treatment for their children. Alta’s mother and father have bowed to the High Court’s heartbreaking judgments; they are prepared to work with the Trust in giving Alta the necessary medical support; but still, when they make their final modest request, the door is shut in their faces.