Guest post: Charlie Gard and the Magical Mantra of Best Interests

This guest post is by Allan Norman, a trained social worker and lawyer, who writes and tweets as Celtic Knot.  I have been following Charlie Gard’s case with interest and sadness.  I am pleased that Allan asked me to post his reflections on this case as it resonates with concerns I share about the use of ‘best interests’ for state interventions using private law mechanisms.

Charlie Gard’s case appears to have reached its final, and many would say its inevitable, conclusion. On Tuesday, the European of Human Rights ruled that his parents’ application, and the application they made on his behalf, were inadmissible; and on Wednesday their judgment has been published. It is the end step in a journey that started when Great Ormond Street Hospital applied for a ruling that it was in Charlie’s “best interests” that his life-preserving treatment was discontinued.

I have already written twice before [here] and [here] at earlier stages of this journey. On each occasion, while others found no fault with, or at least found ample justification for, the decisions that had been made, I was expressing my disquiet and reservations. Indeed, the title of my first piece was “The Supreme Court Is Wrong on Charlie Gard and Withdrawal of Treatment“. In each case, however, I was commenting on procedural developments. Here, I want to unpick and lay bare why I think Charlie’s parents – at least in the later stages – advanced the right arguments irrespective of where those arguments may have led them. And why I remain concerned that the way in which those arguments have been dealt with is legally unsatisfactory.

I’ve used the term “magical mantra” in my title. I’m a registered social worker, also qualified as a lawyer, and I have the privilege of teaching law to social workers at all levels. One message I try to get across is that there are a number of phrases which although they reflect legal principles, should not be trotted out as though they were magical mantras. “Best interests” is one of these. “The welfare of the child is paramount” is another. “Duty of care” is another. I want to convey the idea that these are important legal principles, but that the law is more complex, more multilayered, than these phrases can convey. No case is – or should be – determined solely by arguing how these principles apply to the facts of the case. And we do ourselves a disservice, if we create the impression that these principles might be sufficient to determine the outcome of any case.

I propose, therefore, to set out some of the countervailing considerations that might prevent “best interests” from being the sole principal that determines the outcome of the case. Along each step of the way, I will reflect also on how it might, or might not, have been relevant to Charlie.

1. Best Interests and Resources

There are many, many situations in which a person’s best interests might be served by their having access to more resources. In an age of austerity, the resource issue is constantly constraining what public authorities, including social services, are in a position to offer in a service user’s best interests or indeed to protect them from harm.

In relation to adult care, this issue recently came to a head in the decision of the Supreme Court earlier this year in N v ACCG & Ors [2017] UKSC 22 (22 March 2017). The context was the Mental Capacity Act 2005. It is an appropriate place to start, because as any social worker practising in this area will know, it is a statutory framework in which best interests decision making is quite explicit: where it is necessary to make a decision on behalf of the person who lacks capacity to make that decision for themselves, it must be a best interests decision. But the question arises, whether the decision that must be made under the Mental Capacity Act actually provides a mechanism to access resources that would not otherwise be available. As Lady Hale put it in the Supreme Court,

The decision has to be that which is in the best interests of P. But it is axiomatic that the decision-maker can only make a decision which P himself could have made. The decision-maker is in no better position than P. So what is the decision-maker to do if he has reached the conclusion that a particular course of action is in the best interests of P but the body who will be required to provide or fund that course of action refuses to do so? Specifically, what is the role of the Court of Protection where there is a dispute between the providers or funders of health or social care services for a person who lacks the capacity to make the decision for himself and members of his family about what should be provided for him?

Along the way to reaching its conclusion – that best interests decision making did not provide a mechanism to access resources that would not otherwise be available, or to compel any one to provide services that would not otherwise be provided – the comparable position of children was expressly paralleled:

…the court can only choose between the “available options”. In this respect, the Court of Protection’s powers do resemble the family court’s powers in relation to children. [paragraph 35]

The Supreme Court went on to affirm an earlier case, where in the context of a shared residence order, one of the parents had sought to engage a housing duty, to secure housing for himself with his children:

The question which the housing authority therefore had to ask itself was whether it was reasonably to be expected, in the context of a scheme for housing the homeless, that children who already had a home with their mother should be able also to reside with the father… The authority was entitled to take into account the fact that housing was a scarce resource, the claims of other applicants and the scale of its responsibilities, when deciding the issue of reasonableness for this purpose. Nor should a family court use its own powers as a way of putting pressure upon the local authority to decide in a particular way. [paragraph 36]

Now, here is the sleight of hand used by the law: the Court is affirming that best interests is the test. But at the same time, it is making clear that you do not have an unlimited canvas upon which to paint the best interests outcome you seek. On the contrary, best interests decision making may be tightly constrained within the four corners of one or two resource-constrained options.

Imagine, for example, you are the parent of the child with a significant disability – less significant than Charlie’s, but requiring an Education Health and Care Plan, and significant financial support from the local authority throughout your child’s childhood. Many such parents find themselves encountering protracted battles with the local authority, when their view of the best interests of their child – the support package they need, the best school for them to attend, how their housing needs are best met etc – can gain no foothold in the face of the local authority’s preferred, and cheaper, alternative. Such parents might take Lady Hale’s hand-wringing over having to make a decision that is not in the best interests of Charlie with raised eyebrows: they experience such decisions that are contrary to their child best interests, day in, day out.

(Lady Hale’s hand-wringing? I have in mind this at paragraph 17:

We three members of this court find ourselves in a situation which, so far as we can recall, we have never previously experienced.  By granting a stay, even of short duration, we would in some sense be complicit in directing a course of action which is contrary to Charlie’s best interests.

I am usually a fan of Lady Hale, see [here] and [here] for example; but this, I am afraid, left me cold. It would be more intellectually honest to acknowledge that the best interests of a disabled child all-too-frequently do not prevail.)

But as Lady Hale noted at an earlier stage,

…this case is unusual in that the parents are not asking the hospital to provide or continue treatment at public expense. It is the hospital which has asked for permission to withdraw artificial ventilation and provide only palliative care. Charlie’s parents are asking that the hospital continue to keep Charlie alive by artificial means until they can take him to the United States for the treatment which has been offered there and for which they have raised the funds to pay.

So it is an unusual feature, that the State’s intervention is not resource-driven; it has not been possible to say that the continuation of treatment is not one of the available options; the State has been forced to be clear that it was on the table but rejected.

2. Best Interests and Public Policy

Nor does the best interests of an individual child prevail in the face of any countervailing public policy consideration.

For example, it may well not be in the best interests of the child for their parent to be committed to prison. Such committals will impact upon family life, they will impact upon resources, they will require considerable battles to maintain family relationships going forward. Consider for example the findings of this recent research report. Yet the general position is that there is a public policy interest in maintaining a criminal Justice system that appropriately punishes, deters, rehabilitate etc those who have been found to commit crimes. That public policy interest in relation to criminal justice takes precedence over the best interests of the individual child.

Similarly, it has long been held that the public policy interest in maintaining effective immigration control takes precedence over the best interests of an individual child. One might not think so from tabloid claims that human rights to family life are constantly trumping immigration control, but in fact the reverse is true: well established caselaw since at least the leading case of Isiko & Anor, R (On Application of) v Secretary Of State For Home Department [2000] EWCA Civ 346 (20 December 2000) affirms the principle that effective immigration control represents necessary interference with family life; and in consequence, on the ground, the best interests of the immigrant child all too frequently give way to public policy.

And it did occur to me, that there was a countervailing public policy consideration that was relevant in Charlie’s case. It occurred to me when I read this, on the proposed experimental treatment:

In some parts of the media this has been referred to as “pioneering treatment”. In fact, this type of treatment has not even reached the experimental stage on mice let alone been tried on humans with this particular strain of MDDS. [Great Ormond Street Hospital v Yates & Ors [2017] EWHC 972 (Fam) (11 April 2017) – Charlie Gard’s case at first instance, at paragraph 49]

There is a public policy interest in the effective regulation of medicine and health care; and in particular in the creation of a clear framework which protect people from potentially harmful interventions. Such a framework is likely to require that treatments are rigorously tested for their suitability for use on humans before they are approved. And if that is right, it is easy to see that if the proposed treatment is still in the pre-experimental stage, there is an acutely pitiful conflict between the interests of a child who may not live without experimental treatment; and the wider public policy interest in ensuring that experimental treatments are not administered without appropriate safeguards and regulation.

To be clear, I am not saying that these public policy considerations are necessarily right, nor that it could not be argued that childrens’ interests should take a greater role when deciding sentencing, or deportation, or healthcare decisions. But I am again highlighting that it would be incorrect to characterise the best interests of the individual child as being capable, alone, of determining the outcome of those proceedings. And again, I imagine those parents caught up in those situations struggling with any analysis that seems to suggest, simplistically, that the best interests of the children concerned are determinative of any dispute brought before a court. Best interests is not a magical mantra for them, either.

These public policy considerations came out most clearly in the ruling of the European Court this week. They are exhaustively considered at paragraphs 76-98. Indeed, the Court is to be congratulated that even in an inadmissibility ruling, it is more careful and considered in its reasoning than anything emanating from our Supreme Court in this case.

3. Best Interests and Fair Processes

I have left until last the constraint upon best interests that first grabbed my attention and interest when I read the Charlie’s parents were advancing that the relevant test was “significant harm” rather than “best interests”.

Although “significant harm” is a phrase that recalls Children Act thresholds, I will again turn to the Mental Capacity Act in order to better illustrate my point and its wider application.

In relation to a vulnerable adult, the fact that they wish to make an unwise decision does not mean that they lack the mental capacity to make that decision. And if they do not lack the mental capacity to make that decision, then we do not make a best interests decision for them. Simply put, there are questions which must necessarily be asked sequentially, and the question of whether the presumption of capacity has been displaced, the question of whether the person has been assisted to make a decision for themselves, the question of whether they had the capacity to do so, are all questions that must be asked and answered first, before making a best interests decision.

Nor is the best interests decision the final step in the process, just as it is not the first. For if it is determined, for example, that it is in a person’s best interests to be deprived of their liberty – which engages their human rights – then we are required to also consider questions about proportionality, necessity, whether this is the least restrictive option etc.

And therefore, the best interests decision is neither the first word on the matter nor the last word on the matter. The law, properly understood, first asks whether the threshold is met which allows us to make a best interests decision; then it asks what that best interests decision is; then it reviews whether that best interests decision stands up to human rights scrutiny around proportionality and necessity.

The same is true for children. First, you must consider whether the threshold is crossed that allows the state to interfere at all. If it is crossed, the child’s welfare is paramount in court proceedings emanating from it. Even so, the best interests of the child are subject to a consideration of proportionality and necessity. Indeed, Lady Hale in the Supreme Court in Charlie’s case came close to acknowledging this outright:

But, from a legal point of view and in this very limited procedural context, are the best interests of Charlie necessarily always paramount ? There is, says Mr. Gordon QC on behalf of the parents, another requirement in play, namely that such rights as they have under articles 2 and 8 (and, added Mr. Gordon, possibly also under 5) should be effective. Until the ECtHR has had at any rate some opportunity to consider the application to be filed today, would not the court be violating their right to an effective remedy by taking the course suggested by Charlie’s guardian? [paragraph 18]

Here is a well worn extract from caselaw, originating with Hedley J as he then was, repeated times-beyond-number, and endorsed by the Supreme Court on countless occasions including by Lady Hale in the seminal case  B (a Child), Re [2013] UKSC 33 (12 June 2013):

…society must be willing to tolerate very diverse standards of parenting, including the eccentric, the barely adequate and the inconsistent. It follows too that children will inevitably have both very different experiences of parenting and very unequal consequences flowing from it. It means that some children will experience disadvantage and harm, while others flourish in atmospheres of loving security and emotional stability. These are the consequences of our fallible humanity and it is not the [province] of the state to spare children all the consequences of defective parenting. [endorsed by Lady Hale at paragraph 181]

Or what about this from the same case?

…many parents are hypochondriacs, many parents are criminals or benefit cheats, many parents discriminate against ethnic or sexual minorities, many parents support vile political parties or belong to unusual or militant religions. All of these follies are visited upon their children, who may well adopt or “model” them in their own lives but those children could not be removed for those reasons. [paragraph 28]

I invite you to reflect that we are not suggesting that all this inadequate parenting is necessarily in the best interests of children. Rather, the heart of this dictum, that “it is not the province of the State to spare children all the consequences of defective parenting” is an explicit recognition that the State has no right to intervene simply because some aspect of parenting is not in the children’s best interests.

And how does this work out in practice in child protection? Any care case must have a clearly set out “threshold” document, which sets out what it is that the authority seeks to prove constitutes significant harm to the child. That threshold is then rigorously tested through the court process. As explained in B (Children), Re [2008] UKHL 35 (11 June 2008), the factual matrix relied upon in the threshold has to be proven on the balance of probabilities; and the likelihood of future harm has to be at least a real possibility.

Having reached a reasoned conclusion that the threshold is met, the judge must yet go on to consider the available options, meticulously considering their advantages and disadvantages before reaching a conclusion.

It was precisely the contrast between on the one hand the rigour with which threshold allegation has to be set out, tested and justified, and the alternative options weighed in care proceedings, and on the other the loose reasoning and almost cavalier disregard for the prior and subsequent steps in the Supreme Court’s refusal of permission, that led to my deep dissatisfaction with the judgment in relation to Charlie.

Many of those who have engaged with me have highlighted where you can find within the judgments reference to pain, suffering and distress that Charlie may be experiencing or may experience in the future. I find there is considerable force in those arguments: as I have observed, at each successive stage of the appeal process at least, the question of significant harm has been expressly considered, and the earlier judgments have been scoured to see how they hold up. And yet, I remain dissatisfied. I remain dissatisfied for two reasons.

Firstly, how can I properly advise social workers that they must think logically and sequentially, first whether they have a right to intervene, second what the best interests of the child or vulnerable person is, and third whether that outcome is proportionate and necessary, if the courts in Charlie’s case have not subjected themselves to the same rigorous discipline? Why should a social worker not simply proceed on the basis that the best interests of the child or vulnerable adult is a magical mantra for their cases, if that is what the Courts have done in Charlie’s case? Why can they not say that it is good enough if the harm is recorded somewhere, somehow, that we can refer back to later, if this is what is being done here? How can I persuade them that you cannot be confident to have reached the right conclusion if you have not applied followed the right process, if this is what their health colleagues seem to do?

One of those engaging with me on twitter managed to put forward in two tweets a defence of best interests decision making that I felt I could go along with:

Are you arguing that if there is a more harmful choice the significant harm threshold moves? This cannot be right.

— C.J. Lee (@_C_J_Lee_) June 27, 2017

Conversely if both options involve ‘significant harm’ (i.e. death/experimental treatment), best (or least worst) interests must be the test.

— C.J. Lee (@_C_J_Lee_) June 27, 2017

 

The reason that this did chime with me is that I have never been saying that the best interests of the child are irrelevant. On this analysis, although it is not foregrounded, I note that using best interests principle to choose between available options comes only after a recognition that the available options are harmful to the child. Indeed, it seems to me on a proper reading of the second tweet, the humanity of this approach is to explicitly recognise not only that Charlie’s parents’ decision may cause significant harm, but that the State’s best interests decision does so also.

After all, in more ordinary circumstances, few of us parents would think that a decision that leads consciously, inexorably and imminently to the death of their child could be a best interests decision. Yet when cloaked with the magical mantra of best interests, it is almost as though we are failing to notice the State-inflicted harm.

Isn’t this (finding significant harm everywhere and choosing the least-bad option thereafter) what the Courts have effectively done in Charlie’s case? Certainly, many of those engaging with me have tried to say as much. I’m afraid I can’t see it. Instead of a clear statement reaffirming that you must first consider threshold, and only then sequentially consider the best interests of the child, we have judgments that seem to be trying to say “best interests is the right threshold for the State to take over, and incidentally the significant harm threshold is made out anyway”.

Which brings me to my second reason for being so dissatisfied with the judgments. There are many parents who feel that the State has too much power, that officials too readily impose their worldview and their standards upon parents without considering the validity of the alternatives. It would be a powerful answer to that criticism if it could be shown that those two powerful constraints upon State power and protections of parental rights were operating effectively: that we cannot impose anything unless we can show how significant is the harm that you are causing your child; and that even then we can only impose what we believe to be right for the child where it is both necessary and proportionate to do so.