Harm, Interests and Medical Treatment. Where the Supreme Court Got it Wrong…

By Dominic Wilkinson

@Neonatalethics

 

In the latest case of disputed medical treatment for a child, the family of Liverpool toddler Alfie Evans yesterday lost their last legal appeal. The family had appealed to the European Court of Human Rights to examine whether the UK courts’ decision (to allow doctors to stop life support) was contrary to the European Convention on Human Rights. The European Court (as it had in two other cases in the last 12 months) rejected the appeal. It is expected that the artificial ventilation that is currently keeping Alfie alive will be withdrawn in the coming days.

This decision, difficult as it is for his family to accept, is the right decision for Alfie. Medical treatment can no longer help him. As I wrote a month ago, it is time to stop fighting, time to let him go.

However, one important legal and ethical issue raised in this case, and in the case of Charlie Gard from last year, is about the basis for deciding when parents and doctors disagree. What ethical standard should apply?

Last week, the UK Supreme Court adamantly refused Alfie’s parents’ previous legal appeal, focused on this specific question.  I will argue that the court’s arguments fail and that the current UK legal approach is mistaken. (Though in fact, in the Evans case as in the case of Charlie Gard, it seems likely that the court would have reached the same decision about treatment even if it had applied a different ethical standard).

When should parents’ wishes about the care of their child be respected, when should they be overruled? That question has long been debated in medical ethics and law. One answer is based on the Best Interests of the child – parents should be overruled if their decision would not be in their child’s best interests. However, there have been many ethical criticisms of the use of the best interests standard, for example that it is vague, unknowable, and unrealistic. One prominent alternative is the so-called ‘harm threshold’ – parents should be overruled if their actions pose a significant risk of serious harm to the child.

One interesting element of UK law is that different parts of the law use different standards. So, for example, if social workers are proposing to take a child into care, the Harm Threshold applies; the Children Act (s31) makes clear that the court must be satisfied “that the child concerned is suffering, or is likely to suffer, significant harm”. It would not be enough for social workers to establish that parents were failing to make the best possible decisions for their child (or children). In contrast, if there is a dispute about medical treatment and doctors have applied to the courts, judges will make a decision about which course of action is in the child’s Best Interests. If parents are requesting treatment that the court feels would not be best for the child, it will not allow that treatment, (potentially even if the treatment would also not be harmful).

This legal inconsistency was at the heart of the Supreme Court appeal in the Evans case. The parents claimed that it was “wrong and illogical” to apply the best interests test in one situation, but the harm threshold in others.

“If significant harm (or its likelihood) has to be established before a child can be removed – perhaps only temporarily – from the home of his parents under a care order, why does it not need to be established before he can be removed, permanently, from them and from everything in this world, by death ?” Supreme Court, para 12

Why did the Supreme Court reject these arguments?

The judges claimed that the gold standard for decisions about children is an assessment of the child’s best interests. This is written into the very first section of the Children Act, as well as being part of international human rights conventions. However, the judges then claimed that an additional factor in care proceedings is the concern to avoid state interference in family life:

“For in such proceedings a powerful extra objective is in play, namely to avoid social engineering. These are proceedings by the state to remove a child from his parents. Families need protection from too ready a removal of him. It might be arguable that a child growing up in many households today would be better off elsewhere. But Parliament has provided that that should not be a strong enough reason for removing him.” (para 15)

The judges asserted that this did not apply to decisions about medical treatment

“The present proceedings are quite different; and the gold standard needs to apply to them without qualification.” (para 16)

However, their reason for this assertion was not completely clear. They went on to state:

“Doctors need to know what the law requires of them. The founding rule is that it is not lawful for them (or any other medical team) to give treatment to Alfie which is not in his interests. A decision that, although not in his best interests, Alfie’s continued ventilation can lawfully continue because (perhaps) it is not causing him significant harm would be inconsistent with the founding rule.” (para 16)

 

There seem to be two different claims here

  1. Doctors need to know what they are required to do

It might be that the judges had in mind that the best interests standard is action guiding, while the harm threshold is not.

However, that argument would clearly fail, since social workers also need to know what to do, and the harm threshold is supposed to be able to tell them (and the judges presiding in care proceedings) what that is.

  1. There is a ‘founding rule’ that only treatment that is in a child’s interests may be lawfully provided.

This seems to be the heart of the Supreme Court’s response. However, it appears to be begging the question (ie assuming what it is supposed to be proving). If the argument were set out fully it would potentially look like this:

  • Decisions about medical treatment must be based on a child’s best interests (not the harm principle)
  • That is because of the ‘founding rule’ of decisions for children
  • The founding rule is that medical treatment must only be provided if it is in a child’s best interests

The central argument then seems entirely circular.

  1. Social engineering concerns do not apply to medical treatment decisions

The Supreme Court judges do not make this argument explicitly. However, it seems implicit that they believed that the “powerful extra objective” does not apply to cases of disputed medical treatment. Then the idea is that there isn’t anything special about disputed medical treatment, – rather that cases of child removal are special, and require a different, more stringent threshold to be applied.

However, this implicit argument, if it is the basis for the Supreme Court decision, also appears questionable. From the public and media discussion about the Charlie Gard and Alfie Evans cases, it appears that there is very significant concern within the wider community about state (or doctor or court) interference in parents’ decisions about their children. This isn’t aiming to engineer society according to a particular vision about who is fit to raise children. However, it does appear to be imposing a particular view about quality of life and the benefits of medical treatment on families (who do not share them). It would seem entirely possible (and indeed the Evans’ legal team attempted to do this) to articulate a very strong “powerful extra objective” that applies to cases of life-prolonging medical treatment and which requires a more stringent threshold to be applied.

The use of a Best Interests threshold for disputed medical treatment, but a Harm Threshold for other serious decisions does seem illogical. The Supreme Court arguments fail to establish that medical decisions should be treated differently. There are also reasons to think that this is the wrong threshold to apply. I do not have space to discuss them in detail here, but one intuitively compelling argument is this – if medical treatment would not pose a significant risk of serious harm to a child, then why not provide it? What business is it of the court to interfere?

One important factor would be if the treatment is unaffordable (and providing it would harm other children). However, that did not apply to the Evans and Gard cases, where the parents were seeking self-funded treatment overseas.

 

None of the above arguments mean that treatment should have been provided for Alfie Evans. As I have hinted, there are good reasons in that case (and others) to think that continued treatment was potentially harmful for the child (as well as lacking in benefit). If that is the case, it would have made no difference if the Harm Threshold had been the legal test.

However, that will not always be the case. As Julian Savulescu and I argue in our forthcoming book, the situation of parents and doctors disagreeing about treatment for a child is becoming more common – because of changes in medicine, in availability of information and in social attitudes and values. As such, it is crucial that we have a clear, transparent, and logical legal framework for resolving disagreement. The questions addressed (though not satisfactorily answered) in the Evans Supreme Court appeal will not go away.

 

Forthcoming book later in 2018: Conflicts about medical treatment for children: from disagreement to dissensus. (If you are interested in this book – please send us an email to be notified when it is available.)

Where there is life there is not always hope. Ethics, futility and the Alfie Evans Case

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