- Introduction: #AlfiesArmy v #ImWithAlderHey – an unbridgeable divide?
Alfie’s life, his legal battles, and his death, have polarised opinion.
Decent people on both sides of the debate have been able to acknowledge how awful it must be to be in this situation – both to be the parents of the child hopelessly brain-damaged and with no prospect of meaningful life, but also to be professionals giving over their lives to trying to make children better, but unable to offer any hope.
Rather less decent, in my book, are those who have been throwing around allegations of murder; those who have been issuing death threats; those who have tried to storm a hospital where other beloved children are recovering or dying.
Nonetheless, I have also been alienated by a number of posts from professionals, which seek to explain the law, but along the way seem to take a certain pleasure in demolishing the arguments that have been advanced on Alfie’s behalf; in repeating the strident language with which the Court has criticised those arguments; or in presenting the English law on medical best interests as so self-evidently benign and high-minded that those who dislike it really ought to get over themselves.
I am one of those who does not consider the apparent current state of English law on medical best interests to be benign and high-minded. I don’t think it is good law. I don’t think it human rights compliant. I do think it is corrosive of the relationship of trust between doctors and parents. I do understand as very real concerns, the concerns of those who fear that it is not at all clear what limits there now are on the powers of doctors, and others, who take a different view on children’s best interests, to obtain a declaration.
There had already been a number of earlier court hearings by the time I tweeted this on 16thApril, in relation to arguments then being advanced in front of the Court Of Appeal:
There have been several more hearings subsequently. All have been adverse to Alfie, who has now died. That in itself is troubling. I hope to show that this is not the application of well-settled law that made his arguments inevitably hopeless. Rather, the law is controversial, the goalposts are moving, and no judge has stepped out of line to say, as a life hangs in the balance, “this is controversial, and requires more anxious scrutiny”. I have undertaken to try to capture some of the nuance in the middle ground, and I will therefore probably open myself up to being criticised by both camps. I’ll address this in four stages.
- First, at part 2, I will set out three arguments that I am not seeking to advance. I think it is important to do this, because I think all too often the view people take on these three arguments is obscuring some distinctive feature of Alfie’s case.
- Secondly, at part 3, I will analyse the issues from the perspective of Alfie’s rights. I hope to show that if the issues are approached on the basis of Alfie’s rights rather than on the basis of his interests, the outcome may have been different. Crucially, whether or not the outcome would have been different I certainly advance that if the case had been decided on the basis of his rights rather than his interests, the result would have been fairer, as that approach would have lent greater legitimacy to whatever conclusion was reached.
- Of course, it also follows that I do not think his rights and his interests are the same thing, a point I address at part 4.
- Finally, I will set out by way of taking the long view, the changes I think need to be made.
- Arguments I Am Not Advancing
a) Not advanced: That it is up to Alfie’s parents to decide what level of harm or suffering Alfie might be expected to endure
It seems to have been advanced, in particular in the Court Of Appeal, that Alfie’s parents rights are paramount, and the State shouldn’t interfere. I don’t agree. The State has an important role to protect children from harm. Moreover, I don’t agree with those who suggest that the State should only interfere to protect from criminal harm. Indeed, it is because of Alfie’s and every child’s right to be protected that there has to come a point at which the State intervenes to protect a child from his or her parents.
A feature of Alfie’s case however is that the doctors and the court considered it is “highly unlikely” that Alfie can experience pain:
“Alfie is not responding to any painful or uncomfortable stimuli other than with seizures or with spinal reflexes to uncomfortable/painful peripheral stimuli. Due to his underlying neurological process it is highly unlikely that Alfie has any awareness of pain or discomfort and does not show any neurological signs that would suggest that he is in pain or discomfort such as increase of heart rate, blood pressure, respiratory rate to uncomfortable/painful stimuli. It is likely that the pathways that would usually transmit the stimuli are interrupted/dysfunctional making a cognitive awareness of pain unlikely.” Alder Hey Children’s NHS Foundation Trust v Evans & Anor  EWHC 308 (Fam) (20 February 2018) at paragraph 30
For those who observe that there is still a possibility that Alfie was suffering pain or discomfort, I should simply observe that in other children law contexts the Courts have made crystal clear that the civil standard of proof is the balance of probabilities, no matter how serious the issues at stake: “highly unlikely” means that in terms of the civil standard, he was not suffering pain (see B (Children), Re  UKHL 35 (11 June 2008)).
A further feature relevant to my analysis is that in any event, the hospital has not advanced the case on the basis of protecting Alfie from harm, but on the basis of securing his best interests. There is a clear statutory framework for protecting children from harm. It was not used in this case. Significant harm has never been shown:
“But he was not asked to consider whether they would cause Alfie “significant harm” and so he made no finding to that effect. So the parents are entitled to say that it has never been established that their proposals would be likely to cause significant harm to Alfie, particularly in circumstances in which, on the evidence, it is unlikely, albeit possible, that he has an awareness of pain.“Supreme Court refusal of permission 20thMarch 2018 at paragraph 9
b) Not advanced: That doctors should be ordered to provide treatment even where it is contrary to their conscience
Although there are ethical difficulties around so-called “conscience clauses”, it is a general principle of English law that a doctor cannot be compelled to administer a particular course of treatment. It is not my purpose here to argue against that.
A feature of Alfie’s case however is that there were doctors willing to treat Alfie, albeit in another country. Generally, a doctor who has a conscientious objection to a course of treatment may hand over to a different doctor who does not. I suggest that if there had been no doctors willing to treat Alfie, no Court should have had to make them. But there remains an issue around the correct approach where an alternative is available.
Specifically, I am troubled that Lady Hale, refusing leave to appeal to the Supreme Court on 20thMarch, seems to have gone well beyond asserting that a doctor cannot be compelled to treat. She seems to be asserting that best interests must determine the treatment plan:
“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.”Supreme Court refusal of permission 20thMarch 2018 at paragraph 16
This is a moment to pause, and return to my assertion that the law is not settled. Traditionally, doctors and hospitals have been able to secure medical best interests declarations, in circumstances where best interests are disputed, so as to provide them with a level of protective immunity. By seeking judicial scrutiny, by obtaining an Order that what might otherwise be unlawful is lawful, hospitals are protected from – by way of a pertinent example – an action for unlawful killing or even murder.
Consider for example the order that was sought in Charlie Gard’s case. It is set out at paragraph 5 of the 1stinstance decision. In traditional form, the hospital sought an order that “it is lawful and in Charlie’s best interests…” to withhold treatment. Hayden J does not so clearly set out the order sought in Alfie’s case, but he does say in opening, this:
“The Trust seek a declaration that continued ventilatory support is not in Alfie’s best interests and in the circumstances it is not lawful that such treatment continue.” my emphasis]
It seems to have passed largely without comment that the shift from declaring that something is in Charlie’s best interests and is lawful, to declaring that something is not in Alfie’s best interests and therefore is not lawful might actually be significant. Lawyers at least should surely recognise that there is a difference between a power to do something, and a duty to do it; a difference between a permissive Order, and a mandatory Order; a difference between being given immunity by a judicial Order, and being given a mandate by a judicial order. This is a very different kind of declaration. This does not make lawful what might otherwise be unlawful; it makes unlawful what might otherwise be lawful – notably in this instance, a handover to a different treatment team.
It is not clear whether the Order sought is the order that was actually made (see the Court of Appeal here), but by reference to what the Supreme Court said, above, they at least appear to have been conscious of the distinction, and positively endorsed the new approach. And for my part, if the common law has shifted from providing immunity by declaring lawfulness to mandating hospitals to end life by declaring unlawfulness, that is not something that should be disposed of in a refusal of permission. I will have cause to return to this when considering Article 8, and the requirement for rights interferences to be lawful.
Two further points, before moving on. First, since I’m considering this point in the context of medical conscience and professional judgment, I should say that if I were a body representing individual medics, I would be concerned about this development: I would be happy enough for the law to be providing doctors with immunity, but I’m not at all sure how it advances either conscience or judgment if hospitals are now seeking an order that effectively requires them, and not merely authorises them, to treat in a particular way.
Second, many commentators defending the legal position have emphasised the benign intent of the doctors and hospitals. I don’t deny that. I do observe, however, that it is the hospitals who make the applications who were responsible for framing the applications in a way that does shift and develop the law and enhance the authority that they are given by the declaration that they seek. Alder Hey could have asked for an Order in the same form as Charlie Gard’s. Presumably, it anticipated the likely furore, and sought an order that would stand up down the line to challenges such as an attempt to remove Alfie in a helicopter. It chose to not merely to seek immunity from an unlawfulness suit.
c) Not advanced: That life is sacred, and as far as possible should be preserved
There are those whose support for Alfie has been from a “pro-life” position. I am not arguing such a position, indeed I would argue a “pro-choice” position. The question in circumstances such as Alfie’s is, whose choice?
Nor do I suggest that resources are irrelevant. I’m prepared to accept, for the purposes of argument, that resources are finite and rational choices might properly be made that there should be a limit to the treatment that is freely available, in the wider public interest, even where such rationing decisions may result in death. I’m not suggesting that we are making these resource decisions correctly at the moment; merely that we don’t need to decide them in Alfie’s case. That is because in Alfie’s case, as in Charlie Gard’s before him, the alternative care that was available was not going to be at public expense.
When we combine these three arguments that I am not making, we find that there is a narrow group of cases to which my concerns apply. Very precisely, I am concerned that we are getting it wrong when:
- The child is not suffering;
- There is a medical team willing to take over; and
- The care is not at public expense.
- Alfie’s Human Rights
To be precise, I am referring to Alfie’s rights under the European Convention on Human Rights. These are the rights that might be enforceable on his behalf under the Human Rights Act. I’ll be considering four different rights. If you’re assuming that surely the decisions that were made were consistent with Alfie’s human rights, I’m hoping to persuade you otherwise. Indeed, I hope to persuade you that from a human rights perspective what has happened is very concerning indeed and very odd indeed.
By way of a general introduction to Alfie’s human rights, it might be observed that European Convention rights are largely concerned with providing a framework to protect the individual human being from an over-mighty State. These human rights are quintessentially rights that are asserted by the individual against the State.
It is therefore always a little concerning when the State becomes the arbiter of rights, because they lose their emancipatory potential. But surely, you may think, the framework of these cases, where Alfie was independently represented, and an independent judiciary decided the matter, is an exemplary way to “do our best” to uphold human rights.
Pause and reflect for a moment. The application is made by Alder Hey Hospital, a public authority. A guardian is appointed to represent Alfie. The guardian is independent, but when we say “independent” we mean independent of both the parents and the hospital, rather than independent of the State. In a child protection case, independence means from the parents and the applicant local authority, and provides an important check and balance on behalf of the child. But this is not a child protection case. How independently can the guardian protect the child from the applicant who does not have to show child protection concerns? After all, the role of the guardian is established by legislation; guardians tend to be employed by Cafcass, a public authority; and individual guardians are appointed in cases by the Courts. That is all three branches of the state (legislature, executive and judiciary) having some kind of finger in the accountability of the independent guardian. And then its a judge who decides. On an application made by a public authority, and supported by the publicly accountable guardian.
I will expand, but at this point simply observe that if human rights are supposed to have potential to protect the individual citizen from an over-mighty state, the odds seem stacked in this situation against Alfie. Surely, I would suggest, we need an intense focus upon human rights rather than best interests, to overcome the odds being stacked against Alfie.
So let’s consider four particular human rights, which may be engaged by the facts of Alfie’s case.
a) Article 2 – the Right to Life
At the very least, the Right to Life would seem to embrace a right not to have your life brought to an end by the State. In which case, a decision that it is not in his best interests to continue treatment, and authorising the ending of treatment, is not promoting his Right to Life.
It might be argued in response that his Right to Life is not absolute. That is true. Article 2 is a restricted right, though an individual’s “best interests” is not one of the permitted exceptions to the right. Indeed, if your starting point is that rights protect the individual from the State, it’s just as well that “best interests” aren’t an exception, or the right would afford precious little protection at all!
But perhaps, you might think, the Right to Life is now more sophisticated than simply being a right not to have your life brought to an end by the State. You’d be correct again. Case law makes clear that it also includes a positive duty to protect life, and to investigate deaths.
Then again, you might think that a Right to Life might also embrace some kind of right or freedom to choose the manner of one’s death – a Right to Die, or a Right to Die with Dignity, for example.
Not so long ago, human rights law was clear that the Right to Life did not include a Right to Die. More recently, the European Court has begun to move away from that position, and to recognise that human dignity might also involve some choice over the manner of one’s death. (On these points, see my commentary on Charlie Gard’s case here.) However, I suggest that in Alfie’s case we have moved a whole order of magnitude: this is not about a Right to Life, nor even about the right to choose to die with dignity. This is about an obligation or duty to die in a way that the State thinks is best. And if the Right to Life is to mean anything as a right that is asserted by the individual against the State, it surely cannot morph into a duty to die in a way that the State thinks best.
Does the unwillingness of the European Court to engage with Alfie’s case mean that human rights law is now settled? I think not. More likely, the Court knows it is a can of worms. In Charlie Gard’s case, it invoked just one previous case that had contradicted the previously settled law in favour of life – but without referencing the excoriating criticism of five European Court judges who said that, if this were to become the Court’s approach to the Right to Life in future, the Court had forfeited the moral right to call itself the Conscience of Europe:
“…we believe that once all is said and written in this judgment, after all the subtle legal distinctions are made and all the fine hairs split, what is being proposed is nothing more and nothing less than that a severely disabled person [may]… be deprived of two basic life-sustaining necessities, namely food and water, and moreover that the Convention is impotent in the face of this reality. We find that conclusion not only frightening but – and we very much regret having to say this – tantamount to a retrograde step in the degree of protection which the Convention and the Court have hitherto afforded to vulnerable people…
What is the overriding reason, in the circumstances of the present case, justifying the State in not intervening to protect life? Is it financial considerations? None has been advanced in this case. Is it because the person is in considerable pain? There is no evidence to that effect. Is it because the person is of no further use or importance to society, indeed is no longer a person and has only “biological life”?…
[The French authorities say] that “While the act of withdrawing treatment … results in death, the intention behind the act [is not to kill; it is] to allow death to resume its natural course and to relieve suffering. This is particularly important for care staff, whose role is not to take life.”… We beg to differ… One may not will the death of the subject in question, but by willing the act or omission which one knows will in all likelihood lead to that death, one actually intends to kill that subject nonetheless…
…it is of the very essence of a conscience, based on recta ratio, that ethical matters should be allowed to shape and guide the legal reasoning to its proper final destination. That is what conscience is all about. We regret that the Court has, with this judgment, forfeited the above-mentioned title.”
Say that European human rights caselaw is clear and settled if you like, but at least credit Alfie’s Army with this: at least five judges of the European Court of Human Rights share these sentiments on the human Right to Life.
Note, moreover, that while these judges forcefully asserts the value of life, they like me acknowledge that it is not absolute. They like me are recognising that both resources and pain might intervene, but are concerned that when neither resources nor pain-relief are intervening, and an alternative exists, it is killing by any other name.
b) Articles 3 and 8 – the Right Not to Be Subject to Inhuman or Degrading Treatment and the Right to Respect for Private and Family Life
It is, of course, deliberate that I have grouped these together. They are not on their face very similar: the right not to be subject to inhuman or degrading treatment is an absolute right permitting of no exceptions. Moreover, while it is expressed as a negative right (the State should not do these things to us), the right is very well established as having a positive component (the State must protect us from inflicting these things on each other).
The Article 8 right, by contrast, is a qualified right. It permits of many exceptions, because it requires a balancing exercise to be undertaken between this and other rights, between one person’s rights and another person’s rights. Moreover, while it has positive rights components (the State ought to actively promote respect for private and family lives, which might require action rather than omission) it has always been most powerfully expressed as a negative right (the State must respect our private and family lives by keeping out of them in circumstances where it is not wanted, unless it is proportionate and necessary to intervene).
The reason for considering these very different rights in concert is because they work well together in concert. The State must only intervene unwanted where it is proportionate and necessary to do so. But it is absolute duty to protect us from inhuman and degrading treatment means that it is going to be proportionate and necessary for the State to intervene for that reason.
Now, we can view the Children Act, and its threshold of “significant harm”, through the lens of human rights. If the State must protect us from inhuman or degrading treatment, then it must be allowed to intervene to protect children from significant harm; on the other hand, if it’s interventions must be proportionate and necessary, then there must be a threshold to be crossed before doing so.
It is well known that the Children Act’s child protection mechanism including its threshold of “significant harm” has been declared to be compatible with Article 8, by the European Court of Human Rights. What seems to be forgotten, or perhaps not appreciated, in these medical best interests cases, is that it is compatible becausethere is a threshold.
I make this point because it has been argued in Alfie Evans case that the threshold applies only where a local authority is pursuing an Order, and in other circumstances, including for other applicants, the threshold does not apply.
The Supreme Court in Alfie’s case was specifically confronted with the powerful argument that the “significant harm” threshold ought to apply. To its credit, it articulated the argument movingly, memorably, and correctly. My problem is with its answer. Here is how it is framed it (paragraph 12):
“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?”
My question exactly.
The Court in answer invokes the concept of “social engineering” (paragraphs 15-16)
“in such [care] 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. Significant harm must be established.
The present proceedings are quite different; and the gold standard needs to apply to them without qualification.” [my emphasis]
Really? Heaven protect us! And in particular, protect the parents of any and every child with a severe disability. For it appears that state-sanctioned death of children with severe disabilities is not social engineering. It is something “quite different”.
From my perspective – which, it will be remembered, is focused upon Alfie’s human rights – I arrive at a very different answer. My answer is, since significant harm (or its likelihood) has to be established in order for State intervention to be proportionate and necessary for the purposes of Article 8 when removing a child from the home of his parents under a care order, then significant harm (or its likelihood) equally has to be established in order for State intervention to be proportionate and necessary before a child can be removed, permanently, from them and from everything in this world, by death.
To put it another way, if as a matter of statutory construction, the “significant harm” threshold applies only to proceedings brought by a local authority, and not those brought by a hospital, that does not mean that the best interests test has to be applied without being refracted through the lens of proportionality and necessity; rather, it means that the proportionality and necessity test has to be applied directly without being refracted through the lens of significant harm.
As a matter of human rights law, there is still a minimum threshold, it simply cannot be right to say that if the State disagrees with you about best interests, it is proportionate and necessary for the State to take over. As Eileen Munro (author of government-commissioned reports reforming social work) has had cause to observe,
“In policy debates, there seems to be an assumption that there is some objective measure of what is in a child’s best interests and some objective standards of good parenting applicable in all social circumstances. The possibility of rational disagreement between a parent and a professional on what is in the child’s best interests at a particular point in their lives is not addressed. As a French critic has commented, such an assumption of objectivity is unfounded and conceals the power struggle involved in reaching decisions about what is in a child’s best interests:
Which social classes, which sub-cultures, which professions or institutions, or which combination of these are going effectively to insert their social, moral and psychological values into the process of determining the child’s best interests? (Stender 1979)
This failure to recognize the potential for conflict illustrates what is possibly the most serious problem with the UK policy. ‘‘Power corrupts’’ is a well-known truism but there is no acknowledgement of the possible danger of increasing state power over families.”
So how, traditionally, do the Courts address whether an Article 8 interference is proportionate and necessary? I dealt with this when considering Charlie Gard’s case. I said,
I would have thought it was dubious as to whether the interference was “in accordance with the law”. This is for two reasons. One is that (as Lady Hale meticulously explains at paragraph 79 onwards of this case)
In order to be “in accordance with the law” under article 8(2), the measure must not only have some basis in domestic law… but also be accessible to the person concerned and foreseeable as to its effects. These qualitative requirements of accessibility and foreseeability have two elements. First, a rule must be formulated with sufficient precision to enable any individual – if need be with appropriate advice – to regulate his or her conduct… Secondly, it must be sufficiently precise to give legal protection against arbitrariness…
My other concern is that it is not even clear that the Children Act is being correctly applied, where it applies private law principles to a public law disputes such as this.
In the light of Alfie’s case, more must be said about each of my concerns. An interference with Article 8, as Lady Hale shows above, must have basis in domestic law, be foreseeable as to its effects, and give legal protection against arbitrariness. It is at this point that I have my major quarrel with the developing medical best interests jurisdiction. These decisions are applied for using common law principles, under the inherent jurisdiction of the High Court. We have to be particularly cautious about describing the law as accessible, foreseeable, and protecting against arbitrariness, where it is based upon common law and not statute. We have to be even more cautious about asserting that the law is accessible, foreseeable, and protecting against arbitrariness when declarations that were once seen as protecting doctors are now being held, irrespective of what they say on their face, as constraining the rights of families to do anything other than what the doctors want.
I also referred to private law principles being applied to public law disputes. The so-called “best interests” test seems to make sense where the role of the court is to arbitrate between private parties who cannot agree. But it is a very blunt instrument, as I hope to have shown, where the Court is asked to arbitrate between an individual parent and an over-mighty state who cannot agree.
c) Article 5 – the Right to Liberty
Doubtless, many will have seen that Alfie’s legal team belatedly advanced an alternative argument that there had been a breach of Alfie’s right to liberty. The argument was widely mocked, and understandably: it’s hard for the public to see how a child, who is incapable of exercising their right to liberty; and who is detained so as to receive the best possible care; and who even if he were fully able 23-month-old would have precious little liberty in the care of his parents, could be said to be being deprived of his liberty by the State.
Actually, however, we have been here or somewhere surprisingly close to here before. And it is necessary to spend quite some time here taking the long view, to understand what is going on.
Back in 1998, a man now famous by his initials HL was detained in Bournewood Hospital in Surrey, in a Severe Behavioural Unit, after a particularly fractious journey to his day centre. His foster parents had to fight to get him back into their care, and ultimately took their fight all the way to the European Court of Human Rights, where they won a ruling that he had been unlawfully deprived of his liberty. Those who are familiar with what has become known as the Bournewood case, may be thinking at this point that it was surely about mental health and mental capacity, or perhaps was about the nature of consent and objection, or perhaps was about the nature of deprivation of liberty. Yes, it was. But it was also a seminal case on the interface between the common law and human rights law.
HL was deprived of his liberty, because the doctor decided that it was necessary in his best interests. That was all that the common law required. The application made by Alder Hey Hospital in Alfie’s case also uses the common law, and also relies upon what the doctor thinks is in Alfie’s best interests.
HL’s detention was around the time that the Human Rights Act was being passed, but it was six years before the European Court of Human Rights eventually ruled on his case. The Courts had moved on during those six years. They had begun to develop a “declaratory” jurisdiction, so that instead of a doctor deciding best interests, the doctor could then go to court to seek a declaration that the Court agreed. As indeed happened in Alfie’s case.
So in 2004, the United Kingdom government argued that the fact that there was now the possibility of getting a declaration from the High Court as to someone’s best interests meant that the procedure was now compliant with human rights – doctors were not acting off their own backs, they could protect themselves by getting a declaration. As the European Court noted, Lady Hale as she now is, was among the judges who were developing this declaratory jurisdiction to protect doctors who made best interests decisions.
However, as is now well-known, the United Kingdom lost the case. In all the hubbub about mental capacity, consent and objection and deprivation of liberty, it is often overlooked that the United Kingdom lost this case because the European Court of Human Rights held that the common law declaratory jurisdiction, even with the courts looking over the shoulders of the doctors making best interests decisions, was not human rights compliant because it was too arbitrary and imprecise in its formulation.
Earlier, considering Article 8, I advanced that the threshold to interfere with the rights by ending a life ought surely to be at least as high as to interfere with a right by taking a child into care. The same point applies in respect of Article 5. As the HL litigation clearly shows, Article 5 affords a high level of protection in the form of scrutiny and review, if there is an interference. The fundamental nature of the right means that the interference must be the least restrictive interference. Again, those familiar with Article 5 will be very familiar with this idea: you cannot simply say that an interference with the right is in someone’s best interests, you have to apply the additional test of deciding whether it is the least restrictive option.
- Murderers and the Fanatical Delusionists: Back to Rights and Interests
In an earlier draft, I disposed of the rights arguments in a few short sentences. Although I have revisited that approach, so as to set out in more detail how it might be possible for the State to interfere with rights, that shouldn’t detract from the curious position we have now arrived at:
- It is hard to see how a decision to authorise a course of action that will bring about death can be about upholding a Right to Life;
- It is hard to see how a decision to receive remove decision-making from parents and vest it in a Court, and for the Court to endorse a course of action that will result in death can be upholding a Right to Family Life;
- It is hard to see how a decision that will result in the State having complete control over where Alfie is, for the remainder of his life, can be upholding a Right to Liberty.
- There are some quite difficult arguments about whether an extended and futile life, accompanied by a small possibility of discomfort, might be degrading. However, the hospital has chosen, and the Courts have accepted at every stage, not to proceed on a child protection footing.
From a rights perspective, therefore, the decision applied for by Alder Hey Hospital is not about upholding rights at all. It is better seen as an application for authority and therefore immunity for a course of action that would otherwise be a grave and irrevocable interference with several of the most fundamental human rights that Alfie had.
I struggle to see why so many otherwise informed commentators don’t see this, and are able to see this is as a battle to secure Alfie’s rights in the face of irreconcilable differences with his parents. From a rights perspective, given how grave the interference with Alfie’s rights is, the starting point is to ask what must first be shown that would allow the State to order such a grave interference.
Some have argued either that the best interests and significant harm tests are not substantially different, or more subtly that if the significant harm test were introduced, we would have identical debates, but simply shifted the language we use to discuss them. I venture to disagree with both.
I argued elsewhere and earlier in relation to Charlie Gard, that we were misusing what I described as the “magical mantra of best interests“. I won’t repeat the arguments here, but will observe that in the time since I wrote that analysis, the law seems to have hardened. While eschewing my term of “magical mantra”, Lady Hale seems to be using her own term “gold standard” to much the same effect – to suggest that this is a nice, cosy, warm fixed and certain legal principle that ought not to be controversial, when this is not really the case at all.
When all is said and done, significant harm and best interests are substantially different tests, and in the context of child protection that fact is well-established by decades of caselaw. The former operates as an effective check upon unfettered State power, while the latter provides a framework to authorise it. The former, therefore, plays an important role in upholding the rights of the citizen against an over-mighty State; the latter provides a framework for an over-mighty state to interfere in the rights of the citizen.
Ironically, Alfie’s army seem to have grasped this point in a way that some of my learned legal colleagues seem not to. At least, it seems that there are many among those who have been campaigning who are particularly concerned that it now seems arbitrary to them whether, when and how the State tells them how they should bring up their children. The nature of emancipatory human rights, perhaps makes it inevitable that those at the sharp end of an overbearing State can far more easily see how the law is skewed against them than those who believe that they are benign State agents.
- Conclusion: Yes, We Do Need Alfie’s Law
I left HL’s story in 2004, when the European Court of Human Rights ruled that our common law, medical best interests, and the High Court’s declaratory regime were insufficient to protect HL’s human rights. Now let’s pick it up from there, because that was not the end of the story, but the beginning of a long journey. Parliament legislated to address the absence of a statutory framework for those deprivations of liberty, creating Deprivation of Liberty Safeguards. It wasn’t easy, and we still haven’t got it right, and recently the Law Commission has proposed revisiting that statutory framework. But at least we no longer rely on the arbitrariness of the common law.
The Courts have agonised over how to make sure that the voice of the individual concerned is adequately represented. A number of rulings have emphasised that there has to be a way for the individual concerned to be sufficiently robustly and independently represented, and that this requires adequate funding for independent representation.
And famously, there has been a revisiting of the argument about best interests. In a case called Cheshire West, that went to the Supreme Court (P (by his litigation friend the Official Solicitor) v Cheshire West and Chester Council & Anor  UKSC 19 (19 March 2014)), the argument was advanced that surely, if the person was receiving treatment that was normal and appropriate given the nature of their disability, if the person was receiving care that was of a high standard and in their best interests, it could not properly be said that they were being deprived of their liberty in breach of their human rights.
It was Lady Hale herself who set the record straight. In a pithy and memorable phrase, she pointed out that, “A gilded cage is still a cage“. This encapsulates that it really does not matter how good the care is, it really does not matter how necessary the care is, there is still a breach of human rights if there are not adequate safeguards, if the care provided is not wanted, if there is not an effective way for the person’s voice to be heard.
Lady Hale evidently has a penchant for gilding. I’ve noted how in Alfie Evans case she repeatedly emphasised the best interests test is a “gold standard”.
The ‘best interests’ approach is basically an approach of “nanny knows best”. Many of those who defend it do so essentially because nanny does indeed know best. They respect the expertise of the doctors, and the wisdom of the law, and they think we should listen to nanny. Some of those who oppose it do so because they think that nanny is callous and uncaring at best; cruel, ignorant and wrong at worst.
My approach, the human rights approach, is neither. I say that while nanny knows best, and must protect me from serious harm, beyond that nanny must let me decide, learn and grow for myself, including by taking acceptable risks. That is also what I would expect if I had a nanny and nanny were looking after my children…
And so it does not matter how good the carer is, it really does not matter how necessary the carer is, there is still a breach of Alfie’s rights if there are not adequate safeguards, if the care provided is not what is wanted, if there is not an effective way for rights to be protected.
A gilded death is still a death. Alfie Evans 2016-18 RIP.
Feature Pic : birds in gilded cages by Alan on Flickr (creative commons – thanks)