The recent news coverage of the tragic case of Ashya King has of course provoked heated discussion in the law school. The following contributions consider the issue from the perspectives of Medical Law, Clinical Practice and Criminal Law.
Principal lecturer and medical law tutor, Viv Ivins, who has been particularly focused on the evolving tale writes:
Listening to this story took me back 15 years; my toddler daughter was growing abnormally fast. At just shy of 3 years old, she was the height of a 9 year old, with behaviour patterns more akin to an adolescent. But she wasn’t sick. It was a real struggle to get the medical professionals to take our concerns seriously. We felt let down, not listened to, and disregarded as over-fussy parents. I’m sure no-one actually said “trust me, I’m a doctor, I know best…” but the implication was thrown at us continually. I still have little trust.
We were lucky in that I had worked in the NHS as a radiographer for 10 years before studying law. I had enough medical knowledge to self-diagnose. I knew her symptoms could be caused by a tumour in her brain. By then I was working as a solicitor and now had enough legal knowledge to present a cohesive and forceful case. Even so, it was determined persistence and, yes, some brusque rudeness that got us a referral. Parents lacking this knowledge may well have accepted the dismissal and walked away. Perhaps they would have been grieving parents by the time they realised they should have made more of a fuss.
She was diagnosed with a brain tumour. For several weeks the horror of what lay ahead occupied every thought. Sleep was scarce. The human need of a parent to do anything and everything to protect their child was brought into harsh reality. Undoubtedly I would have sold everything I owned, and travelled around the globe if it would have secured my child’s future. Yes, I understand the frustration and desperation that motivated the King’s actions. Fortunately, we were handed a get-out-of-jail-free card. After tests and treatments, that tumour was benign. I had the shortest experience of the emotions Ashya King’s parents must be experiencing and I know that as a parent, desperation makes you consider desperate things.
Now a university medical law lecturer I can take the time to reflect on the wider considerations of the complex legal issues a case of this nature involves. My first impression is that this is a Medical law case – isn’t it? Or is it really family, or child protection? What about International law, crime, human rights, even immigration?
Ashya’s parents found themselves arrested, in court and locked in a foreign prison for the simple act of walking out of hospital with their son and travelling to their property in Spain. The questions being asked are:-
- Is it permissible to take your child from a hospital?
The law here is relatively straightforward. Of course a parent can remove their sick child from medical care – providing the child is not the subject of a protection order and there is no other court order preventing them from doing so. It may be desirable to seek care elsewhere, look for a second opinion, or reject painful and intrusive medical action.
- Why then should a hospital react in the way Southampton General did?
This is where the grey areas appear. A hospital, a doctor or any healthcare provider must act in the “best interests” of all its patients. This is usually non-controversial. However, in cases such as this, where an immature minor is involved, difficulties can, and do, arise when the patient’s parents are not in agreement with the hospital over the precise nature of those ‘best interests’. Most would perhaps think that a parent has the right to decide what is or is not done to their child, and it is recognised that parents are entitled to give consent for medical treatment on behalf of their children. Largely parents and healthcare providers want the same outcome for the child and therefore most of the decision making is left to parents with appropriate input from the clinical team.
In their 2008 guidance document ( Ethics Department, British Medical Association, the BMA indicate that “In cases of serious or chronic illness, parents may need time, respite facilities, possibly counselling, and certainly support from health professionals, but in most cases they are best placed to judge their young child’s interests and decide about serious treatment. There are limits on what parents are entitled to decide, however, and they are not entitled to inappropriate treatment for their children or to refuse treatment which is in the child’s best interests. For example, where children need blood products to prevent death or serious deterioration, a refusal by a parent who is a Jehovah’s Witness is unlikely to be binding on doctors.”
So there we have it – there is a clear responsibility upon a healthcare provider to protect the child from any inappropriate decisions their parents may want to take. Yes, we can all think of situations where children need to be protected from their parents. Doctors are entitled to act paternalistically in treating a young patient in a manner they believe is in the child’s best interests. The courts have demonstrated their commitment to this doctrine. The fairly recent case of a seven-year old boy ordered to be given radiotherapy to treat a brain tumour despite this being against his mother’s wishes, was widely reported. In that case, Sally Roberts refused to consent to the radiation treatment on the grounds that she thought it would be harmful to her son Neon’s IQ, and may lead to infertility. The court was more concerned about preserving Neon’s life, and concluded her judgement had “gone awry” (Bodey J).
Traditionally a doctor taking steps to administer treatment (or withhold it) against an immature minor’s parents’ wishes, would be able to rely on such common law principles – arguing that a course of conduct which jeopardises the well-being of a child is unreasonable and contrary to best interests.
Of course the healthcare providers’ actions must be in good faith and they must be justifiable on the basis of best interests – before a court – if necessary. In Glass v UK (2004) 39 EHHRR 341, the European Court of Human Rights held it was a breach of a child’s human rights to respect for private life – and bodily integrity – for a hospital NOT to seek the courts permission to proceed with a course of treatment to which his parents objected. Had it been an emergency situation, then justification could have been demonstrated – it was not an emergency in Glass, but in Ashya’s case, perhaps so.
The position must be that where there are significant disputes between the healthcare practitioner and the parent – the court should properly be involved.
How does any of this inform the tragic case of little Ashya King? Here his parents have stated they pleaded with the hospital for an alternative – but still orthodox – treatment to be provided. The hospital believed the treatment they were already providing was the best for Ashya – he was simply being treated in a different way. If Southampton were aware of the breakdown in understanding between them and Ashya’s parents, and they feared the eventual outcome, they could have requested the court’s involvement, pre-empting this situation, but they did not. Only the day after he was removed, was Ashya made a ‘ward of court’; his parents suspected of neglect. Still, how can we reconcile this action in these circumstances. This is a much loved child within a caring family whose parents simply disagreed with a set of medical opinions and exercised their right to seek help elsewhere? I wonder how much trust in medical practitioners I would have retained, had I not simply been disapproved of, but criminalised for desiring the best outcome for my child?
The reasons given for the subsequent apparently heavy handed state involvement, were that the hospital had genuine, grave concerns for Ashya’s safety – citing the weak battery pack on his feeding mechanism and a lack of the liquid feed required. In those circumstances – if the risks were as grave as suggested – the hospital could of course be said to have acted responsibly and in Ashya’s best interests.
But what of the excessive reaction which followed? The law certainly seems to permit the activity which we saw. International arrest warrant? Interpol? Extradition order? Criminal charge of child neglect? Imprisonment?
Consider a hypothetical situation – a child undergoing life-preserving treatment removed from hospital; the parents intend him to be treated by drinking green pond weed, because they truly and genuinely believe it would afford him a cure. If no-one steps in and the child died – who would society blame? The parents? The hospital? The state? The Police?
The law has to be flexible. It has to allow for different levels of behaviour; whether that is mildly irresponsible; evil & criminal; wild and wacky; or motivated by frustrated desperation. Here, it is clear that the full force of the law was brought down on the King family – who, with hindsight were only doing what every caring parent would do, certainly what I considered doing – desperately searching for the best treatment for their child. Yes, maybe in desperation, they did a desperate thing.
The fact that the outcome of applying the full force of law was destructive was not taken into account. Whilst the starting point of the chase across Europe, was a desire to uphold the best interests of Ashya, at what point were these forgotten? It could not be said that being locked up under police guard in a foreign hospital, separated from any family and 500 miles away from his imprisoned parents was in anyone’s, least of all Ashya’s, best interests.
No doubt debate will proliferate. No doubt laws will be scrutinised. And just when we’ve moved on, no doubt another case will reawaken everyone’s moral intolerance.
This is the stuff of nightmares. There but for the grace of God.
Ashya – please get well.
Afterthought : the other main news story in the same week was a tale about 1400 children sickeningly sexually abused. They pleaded for some adult, state protection, but were afforded none. Discuss.