Catholic Medical Quarterly

The Journal of the Catholic Medical Association (UK)

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Catholic Medical Quarterly Volume 69(4) November 2019

The Alfie Evans case: the family, the State and the Law.

Dr Rachel Nicholls (formerly Hammond) MBChB, BSc (MedSci)

Introduction

Alfie Evans was a seriously ill little boy.  The emotive dispute about withdrawing his life-sustaining ventilation was played out in the public eye over several months.  It provoked passionate responses from commentators here at home, and all over the world, embroiling our own Prime Minister and even the Pope. 

Alfie Evans presented with a febrile illness and seizures to Alder Hey Accident and Emergency Department in December 2016.  The seizures worsened.  He deteriorated rapidly. He was soon dependent on intensive care measures to keep him alive.  His case was unusual and subject to many expert national and international medical opinions, but nobody was able to offer treatment to reverse the neurodegenerative process which had been diagnosed (Alder Hey Children's NHS Foundation Trust v Evans and others, 2018). 

One year on, his doctors, conscious of their inability to save Alfie, wanted to remove Alfie’s life-support and allow him to die. Alfie’s parents, especially his father, fervently disagreed with this proposed action.  The hospital sought a declaration from the Courts that continued ventilatory support was not in Alfie's best interests, who ruled in agreement. Numerous failed appeals followed, with the case eventually reaching the European Court of Human Rights.  Ultimately, the decision to withdraw Alfie’s life support was carried out on 23rd April 2018, and Alfie died 5 days later (Liverpool Echo, 2018).

The question that this paper will focus on is how the current legal system, and the legal standard used in these cases, that of ‘best interests’, affects the natural relationship between parents and their child, and more broadly, how this reflects the current relationship between the State and the family.   It will look at some of the ethical concerns with such a standard, and tentatively explore what may have happened to Alfie Evans had an alternative standard, that of the ‘harm principle’, been applied.

Context

To begin this discussion, we need to explore the historic relationship between the State and the family that existed in the West in preceding centuries.  We start with presumption based on the natural law that parents have a natural authority to make decisions regarding their children. This is the stance taken by the Catholic Church and was expounded in great clarity by Pope Leo XIII in his Encyclical, ‘Rerum Novarum’ (1891), in which he writes: “Paternal authority can be neither abolished nor absorbed by the State; for it has the same source as human life itself. "The child belongs to the father," and is, as it were, the continuation of the father's personality; and speaking strictly, the child takes its place in civil society, not of its own right, but in its quality as member of the family in which it is born”. It warns against undue State interference in the family, “the contention, then, that the civil government should at its option intrude into and exercise intimate control over the family and the household is a great and pernicious error” (Rerum Novarum, §14).  The family is itself a ‘society’ a priori to the State. The Catechism of the Catholic Church explains the role of authority as to provide for the common good (§1897-1904). We see suspicions arise about State interference: “the rights, the fundamental needs, the well-being and the values of the family, even though they are progressively safeguarded in some cases, are often ignored and not rarely undermined by laws, institutions and socio-economic programs” (John Paul II 1983, §J).

The natural rights of the family are also endorsed by secular declarations, such as in the UN’s Universal Declaration of Human Rights (1948) which advocates for the right to a private and family life (article 12), that the family is the natural and fundamental unit that constitutes the State (article  16) and that the State has a duty to provide for its citizens in times of need including sickness (article 25).  Taking this as our starting point, we shall now look at how the State, through the law courts, became involved in medicine.

The courts became involved in medical matters in regard to medical negligence litigation.  In Bolam (1957), the judges were content as long as the practice in question could be defended by another responsible body of medical opinion. In Bolitho (1997), although a largely similar approach was taken, a caveat was introduced, that, for the first time, apportioned to the judge the task of making sure the practice withstood “logical analysis”. Today, it is the courts’ who can decide on the best clinical practice.  This is neatly summarised in An NHS Trust v MB and Others (2006): “a dispute has arisen between the treating doctors and the parents, and one, and now both, parties have asked the court to make a decision, it is the role and duty of the court to do so and to exercise its own independent and objective judgement.” 

The implications of taking a dispute about medical treatment to court are significant.  Deferring to a court opinion it is certainly not a neutral action. “Once the case proceeds to court, the relevance of the parental view dwindles” (Cave and Nottingham, 2017).  The decision is no longer in the hands of the clinicians, nor the family; it is the courts that gain the power.  Lord Woolf (2001) makes this clear: “the courts are the final arbiters and not the doctors”.  Woolf acknowledges that traditionally it has not been the role of judges to make medical decisions, and cautions for humility in exercising this new capacity.  Yet, in appreciating the need for regulation of the medical body through an understanding that “the court’s role is to regulate the regulators”, does this not only serve to further elevate the authority of the law courts above all others?

This is the situation as it stands today.  Next, we will look at how the ‘best interests’ principle embedded itself into the legal framework for medical decision-making. Historically, the authority of the State to make decisions for people incapacitated to do so themselves existed through parens patriae jurisdiction. This was the state of play until the enforcement of the Mental Health Act in 1960.  Notably, although it legislated for State decision-making power with regard to welfare and finance, it didn’t include medical treatment and care, and in effect, a gap in legislation existed until 1990 (Szerletics et al., 2012). In the intervening period, the legal system declared that the rights of parents were not absolute (Gillick, 1986), and in 1989, the Children Act first made reference to the child’s welfare as being “the paramount consideration”, in respect to the law governing local authority provision of care, foster homes and adoption.

In Re F (1990), the aforementioned gap in legislation was exposed, but it was decided that doctors, under the common law principle of necessity, could of course treat patients without consent as long as it was in their best interests.  Re F (2000) affirmed that the courts had the power to require a person to live as directed by the local authority.  And of crucial interest, as was applied in Re SL (2001), is that a ‘best interests’ decision, “logically” has only one outcome.

In 2005, the ‘best interests’ application in common law was finally enshrined in statute law in the Mental Capacity Act (2005).  Although the Mental Capacity Act (MCA) refers to the treatment of adults only, its principles also affect the application of ‘best interests’ to children. Interestingly, the Adults with Incapacity (Scotland) (2000) Act which preceded English legislation used term ‘benefit’ instead with ‘best interests’, with the two legislative jurisdictions holding slightly different interpretations of ‘best interests’ (Szerletics et al., 2012). The ‘best interests’ standard has been subject to much criticism since its inception in the Mental Capacity Act, but while criticism is valuable, it is only bears fruit if a better standard can be borne of it.

Ethical Critique

Of the many criticisms of the ‘best interest’ standard, this paper shall focus on those particularly pertinent to its application to the Alfie Evans case, and their impact on the family-State dynamic.

(The issues of dignity, experimental therapy and resource allocation, although critical to the wider discussion, shall not be addressed in this paper.)

A recurrent criticism of ‘best interests’ is that it is too vague. In fact, the MCA does not actually define ‘best interests’. One academic has drawn out four possible interpretations derived from its common law application (Donnelly, 2009). The first is akin to ‘best medical interests’. The second stresses the need to also consider social and other welfare preferences.  The third uses a ‘reasonable patient’ model - ‘what would a reasonable patient want in this situation’? The fourth suggests that best interests takes equally into account medical, social and welfare considerations. 

Despite the possibility of the ‘best medical interests’ interpretation mentioned above, the MCA has been criticised precisely for omitting to instruct decision makers to consider what would constitute best clinical care, leaving that consideration subordinate to their perception of what the patient might want, and what the ‘least restrictive’ intervention might be.  There are concerns that this may be leading to situations whereby people with capacity receive one standard of clinical care, and those without capacity receive a sub-standard level of care (Treloar and Cole, 2019).

In relation to the difficulty in interpreting the meaning of ‘best interests’, is the criticism that, rather than being an objective standard, ‘best interests’ is necessarily based on values which are inherently subjective to the decision-maker.  Close et al. (2018) identify this as a problem in its application to the Gard case.  Although they identified key values that underpin these decisions, they do not attempt to answer how to address the conflict that may arise, if these values, and those who hold them, come into competition with one another.

One of the central points of debate in Alfie Evans’ case was about ‘futility’. The application of this concept requires care.  A treatment is futile when it is of no value to the patient. John Wyatt (2009, p185), consultant paediatrician, cautions that when we talk about the value, or futility, of life-sustaining treatment, that we need to ensure that we are referring to the value of the treatment versus its burden, as opposed to the value of the life of the patient. However, Lord Justice Hayden, in Evans (2018 EWHC), appears to have done just that as he explains his rationale for his judgement that continued ventilation was not in Alfie’s best interests: “I came to the conclusion, that Alfie's brain had been so corroded by neurodegenerative disease that his life was futile.” 

The concept of futility was challenged multiple times throughout the Aintree University Hospitals NHS Foundation Trust v James case. Mr James was a 68-year old man in multi-organ failure with a little prospect of recovery. His doctors were seeking assurance from courts that they would be acting in Mr James’ best interests in withholding specific treatments should his condition deteriorate further.  (Mr James’s family opposed this view).  Taylor (2016) summaries the chronology of its development in her article: initially the Court of Protection had ruled that the proposed treatment would not be futile as long as it offered an opportunity for Mr James to resume his life to a quality that he would regard as worthwhile. This was rejected in the Court of Appeal whose view was that a treatment was futile unless it had a prospect of cure or at least palliation of suffering.  This was again overturned by Lady Hale as the case reached the Supreme Court (2013), who judged that for the treatment to be deemed non-futile, it need only “bring some benefit” subject to the patient’s point of view, even if it didn’t offer the chance of cure or palliation.

For Alfie Evans, it wasn’t so much that the life-sustaining treatment was judged as futile, as that his life was judged as futile. Application of the ‘best interests’ principle in this way completely disregards Alfie’s parents’ experience of the value of their son’s life.  "The child belongs to the father, and is, as it were, the continuation of the father's personality”, Pope Leo wrote. The child and his loving father are not separable. In recalling these words, we can see that, in a way, this judgement was tantamount to a total disregard for Alfie’s parents themselves. 

A final criticism of the ‘best interest’ standard can be taken from Douglas Diekema’s considered work on this subject (2004).  He makes the point that parents are not obliged to make other decisions regarding their children’s welfare to the standard of ‘best’, nor would the state be justified in intervening in situations where they don’t.  Furthermore, he understands the importance of the child’s relationship to their family, in particular to other siblings, in making decisions: “Conceptually, isolating a child from the familial context would simply suppress other legitimate interests”. This viewpoint could be challenged, in that, unlike other decisions regarding child welfare, few are life and death decisions.  Therefore, it might be right and proper that the standard for life and death decision-making is much higher than that used for everyday decisions.  However, his arguments carry considerable weight, and leads him to the conclusion that the ‘best interests’ standard is often unattainable, unrealistic, and leads to unjustified State intervention.  He begins to consider an alternative standard that does not use ‘the best” as its goal, and attempts to set out a different bar: the degree and circumstances surrounding the harm to the child as result of parental decisions that would justify State intervention.

Medico-legal issues

This section will look at some of the wider medico-legal implications of current State intervention in such cases, before embarking on a tentative exploration of what might have happened had the legal standard used been the ‘harm principle’ instead of ‘best interests’.

It is worth mentioning again, that the very subjection of the making of a medical decision to the courts is not in itself a neutral action.  The previously existing rights of the parents to consent to treatment on behalf of their child is, in effect, replaced by the court’s obligation to make a decision based on their determination of the child’s best interests (Treloar, 2018) (my emphasis).

By involving the Courts, neither do the clinicians retain their decision-making authority. They too become legally bound by the court’s decisions. 

Taking a dispute to court can be “adversarial”, “costly” and “potentially lengthy” (Wilkinson and Savulesco, 2018a). The initial declaration in Gard by Francis J was appealed three times over several months, and the stay of the High Court’s declaration to withdraw treatment until the case was heard by the European Court of Human Rights was controversial (Cave and Nottingham, 2017).  In the meantime, the hospital continued to provide treatment that had been judged as unlawful, a legal situation that nobody would choose to be in.

The ‘Harm Principle’

Despite those that argue that this case was a victory for good law (Close et al. 2018, Cave and Nottingham, 2017), there are those who call for a serious reform of the law (Treloar, 2018; Wilkinson and Savulesco, 2018b; Woolfe, S, 2018).

The philosophical underpinning of the “harm principle” is derived from John Stuart Mill’s “On Liberty”, in which he purposes that the only reason that the authority of the State can be exercised over the individual is prevent harm to others (in Gray and Smith (ed.), 1991).

Some might hope that use of the harm principle would raise the threshold for state intervention, so that the State would only act in loco parentis as a last resort.  The doctors in Alfie’s case may still have felt that they were in this “last resort” position, and might have sought a declaration that continued ventilation was in fact ‘harmful’ to Alfie.  This may have been harder to prove, and so not declared.

However, it is interesting to consider the impact on the rights of the parents had the Court ruled in such a way. Ruling something as ‘harmful’ carries more gravity than simply ‘not being in best interests’.  The courts may have been less likely therefore to grant leave to appeal. The parental opinion would not necessarily have been given any greater weight in the decision-making process, and its value after the judgement may have been disregarded to an even greater extent than in using ‘best interests’.

In contrast to the ‘best interests’ standard, where the courts deliberate over the one best solution, the ‘harm principle’ allows for a choice between reasonable alternatives. Had the Courts decided that they could not judge continued ventilation as being ‘harmful’ for Alfie, his parents would surely have retained more authority in the decision-making process than they had under the current system, because they would have remained central to discussions.

One of the alternatives might have been to allow transfer of Alfie to another hospital for ongoing ventilation.  However, this would have forced Alfie’s clinicians and nursing staff to compromise on their own personal ethical and professional judgement that continued ventilation was wrong. On the other hand, it may also have been a way of sharing the burden of looking after Alfie (from the technical and financial, through to the emotional burden).  Ongoing care could have been provided, in another UK hospital, or, as was offered, in Germany or in Italy.  Doctors in Italy may have proceeded with more invasive procedures, such as inserting a tracheostomy or a PEG tube. Once out of the country, the UK law courts would have had no jurisdiction over Alfie. Certainly, from the courts’ perspective, being asked to make a judgement on the risk of harm when the treatments offered abroad are speculative would be very tricky to do.  

Any model which involves ‘harm’, will be subject to some of the same criticisms as ‘best interests’: namely, that what constitutes ‘harm’ will also be value-driven, and there will be no way to commensurate competing conceptions of ‘harm’ (e.g. the harm of loss of life vs the harm of continued life in such a poorly condition). In addition, there will be dispute about the immediacy and the seriousness of the harm (as discussed in Diekema, 2004) that would justify overruling the parents’ decision.

There is not space for a more thorough evaluation of the advantageous and disadvantageous of such a principle, but in any case, reform of the law would require substantial upheaval, for the application of a harm principle has already been rejected in the Gard and Evans cases.

The solicitors in Gard sought to prove that experimental treatment in the USA should be considered as a “viable, alternative treatment option”, and argued that “the court should not interfere with the parents' choice of treatment unless it is established that the pursuit of that option is likely to cause the child significant harm” in reference to the apparent choice given to the parents in Re Aysha King (2014).  This was rejected on the basis that the experimental treatment had already been judged as futile, and it remained in Charlie’s best interest to be allowed to die.

Mr Justice McFarlane left no room for doubt over interpretation of what was said in the Re Aysha King: “If, contrary to my primary reading, Mr Justice Baker did intend to state, where a parent puts forward a viable option for treatment, that the High Court only has jurisdiction to interfere with a parent's choice of that medical treatment if the child is likely to suffer significant harm as a result, then, in my view, such a statement has no foundation as a matter of law, is contrary to established authority and is therefore plainly in error.” (Yates and Another v Great Ormond Street Hospital for Children NHS Foundation Trust and Another (2017)).

In Evans, Alfie’s parents’ solicitors even argued under Habeas Corpus legislation for the right to take Alfie abroad for treatment.  This was rejected by Hayden J, and strongly rejected again in the Court of Appeal in favour of the ‘best interests’ decision-making process.

Although some commentators contended that the request for transfer of Alfie was “not unreasonable” (Treloar, 2018), pursuing this line of argument is unlikely to affect the application of best interests in the future, given its repeated rejection in recent court cases.  The finality and exclusivity of ‘best interests’ decision-making could not be illustrated more clearly than in this statement from the Appeal Court re Evans: “Even if there was a deprivation of liberty, it was clearly lawful because it had been determined to be in the child's best interests and no other available or proposed course of action would be”.

Acknowledgement

I am grateful to Fr Robert Gay OP who first introduced me to the idea of framing Alfie Evans’ case in the context of what the Church teaches about State-family relationships.  I heard Fr Gay speak at a panel discussion on Alfie Evans’ case held by the Catholic Union in London on 11 September 2018.

Dr Nicholls is a junior doctor currently studying for a Masters in Bioethics and Medical Law at St Mary's University, Twickenham.  This paper is based on work submitted as part of her coursework.