This paper does not focus on the obvious difference between a ‘terminally’ and an ‘incurably’ ill child; it focuses on children of both categories for whom further medical care is futile. Where there is life, there may not be hope. In order to decide who should be the final arbiter about the future of such children, one has to determine by what standard an arbiter should make a decision. This standard should be the child’s best interests, because it is the child’s well-being and life that is at stake. After analysing the suitability of doctors, parents and judges, I conclude that a new tribunal should now supplant judges as the final arbiter in the UK, and possibly worldwide. As medical technology improves, the number of medical futility decisions will increase and the need for a more suitable final arbiter than exists at present will become more pressing and desirable. This tribunal, an improved version of the final arbiter in the Texas Advance Directives Act (TADA) (Texas Health & Safety Code, s 166), would have to be introduced by Parliament.
Best interests
English common law has developed a ‘gold standard’ when dealing with children, namely an assessment of the child’s ‘best interests’. This is consistent with the Children Act 1989 (ChA 1989), which begins: ‘When a court determines any question with respect to [a child] … the child’s welfare shall be the court’s paramount consideration’ (s 1(1). This Act reflects Art 3 of the UN Convention on the Rights of the Child, signed in the same year: ‘In all actions concerning children, … the best interests of the child shall be a primary consideration’. This gold standard (or founding rule) of the child’s best interests has emerged as the best way of upholding children’s rights in the UK. It is unsurprising that foreign courts are also starting to adopt this ‘best interests’ approach.
Nevertheless, some commentators call ‘best interests’ an opaque standard, with Douglas Diekema arguing that a harm standard is clearer than a ‘best interests’ standard, and more readily understood by doctors, parents and legislators
(D Diekema, ‘Parental refusals of medical treatment: the harm principle as threshold for state intervention’, Theoretical Medicine and Bioethics (2004) vol 25, no 5, pp243-264). However, while ‘harm’ may seem a more
intelligible concept, defining it is no less problematic. Giles Birchley notes that ‘harm’ contains complex value judgements: for example, ‘fatal withdrawal of treatment is a harm of indefinable proportions—perhaps catastrophic,
or perhaps not even harm at all’ (G Birchley. ‘Harm is all you need? Best interests and disputes about parental decision-making’, J Med Ethics, (2016) vol 42, no 2, pp111-115). Johan Christiaan Bester uses the Charlie Gard
case (Great Ormond Street Hospital for Children NHS Foundation Trust v Yates and others [2017] EWHC 972 (Fam), [2018] 1 All ER 569) to query whether it is harmful to continue life-sustaining treatment that could prolong and/or complicate the
road to death, and whether it is harmful to sustain an irreversibly poor quality of life (J Bester, ‘Charlie Gard and the limits of the harm principle’, JAMA Pediatrics (2018) vol 172, no 3, pp300-301). Distinguishing between the
‘harm’ and the ‘best interests’ standards is both challenging and of little practical value: deciding best interests involves judging whether (potential) harms outweigh (potential) benefits.
A recent UK medical futility case involved one-year-old Alfie Evans, whose brain was severely and irreversibly damaged by a terminal degenerative condition. The doctors wished to withdraw futile life-sustaining medical treatment (LSMT) but Alfie’s parents refused, wanting instead to provide Alfie with further treatment overseas. In the High Court, Justice Hayden judged that Alfie should not receive further LSMT anywhere as it was not in his best interests (Alder Hey Children's NHS Foundation Trust v Evans and others [2018] EWHC 308 (Fam), [2018] All ER (D) 117). This ‘best interests’ standard was challenged when Alfie Evans’s parents appealed to the Supreme Court in March 2018. They invoked s 31 ChA 1989, which provides that a court can only make a care order if the child is suffering (or is likely to suffer) significant harm, with this harm being attributable to unreasonable parental care. They accordingly argued that the ‘question should… be whether their proposals for Alfie’s future care would cause him to be likely to suffer “significant harm”’—even if these proposals might not be in Alfie’s best interests. Their argument highlighted a potential inconsistency in UK law: significant harm needs to be established to take a child out of parents’ care, but no significant harm needs to be established to take a child out of this world. Lady Hale, Lord Kerr and Lord Wilson dismissed this argument: ‘The founding rule is that it is not lawful for [doctors] (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’.
Despite reiterating the supremacy of the founding rule, the judges did not nail quite why the significant harm test was not relevant in this case. They could have clarified why the argument put forward by Alfie’s parents is flawed: ‘best interests’ is the underlying principle behind all decisions made on behalf of children—medical, social or otherwise. The requirement in s 31 ChA 1989 that the child must be likely to suffer significant harm before the court can make a care order does not mean that the child’s best interests are forgotten—quite the opposite. The inference in s 31 is that unless significant harm is caused by unreasonable parental care, it is not in the child’s best interests to leave home. There is no different, more stringent test for care orders—everything still revolves around the child’s best interests. Although different guidelines apply to ‘quite different [care] proceedings’, the ‘best interests’ principle applies in both cases.
The judges in Alfie’s case well understood the regrettable consequences of changing the founding rule and making significant harm the standard in medical futility decisions. The treatment offered to Alfie was ‘[not] likely to cause significant harm’, but as the ‘degeneration [was] both catastrophic and untreatable’ and ‘his brain [was] entirely beyond recovery’, his life was ‘futile’. In the High Court, Hayden J judged that alternative treatment in Rome proposed by the Vatican and Alfie’s parents would be irreconcilable with Alfie’s best interests. The proposed treatment would not provide a cure or any treatment not already offered: ‘All that could be offered … was an alternative palliative care plan. An end of life plan’ (Alder Hey Children’s NHS Foundation Trust v Evans and others [2018] EWHC 953 (Fam), [2018] All ER (D) 125 (Apr), para [3]). No parties wanted Alfie to die in transit, or have any chance whatsoever of harm, or die an undignified death outside of a secure environment with his family present. Had the ‘significant harm’ test been applied, Alfie’s parents could have taken him to Rome against his best interests.
On the basis that the gold standard should be the primary consideration because a child’s interests matter most, an analysis of whether doctors, parents, judges, or a combination thereof, should be the final arbiter of a very ill child’s best interests now follows.
Doctors
Doctors are best placed to assess the medical situation of a child due to their expertise in their field. While ‘best interests’ require more than merely medical considerations (Wyatt (a child) (medical treatment: continuation of order), Re
[2005] EWCA Civ 1181, [2005] All ER (D) 107 (Oct)), medical assessments inevitably form the heart of any best interests debate about the future of a terminally or incurably ill child. Only doctors can answer the following questions: what are the chances
of death/survival/improvement? How much harm is being caused? Is all treatment unquestionably futile? Although judges are not bound by views of doctors, the central issues will be matters requiring medical expertise. On what grounds can judges
(probably with no specialist medical knowledge) overrule substantial medical evidence and collective professional opinion? However, although doctors are heavily involved in the decisions made and possess the most relevant knowledge, they should
rarely be the sole final arbiter. It would be hazardous to allow doctors alone to decide on best interests (a concept that is inherently subjective) except in triage situations.
In triage situations, doctors may be put in an ethically challenging situation. For example, if a child is on the only available life support machine, and another child enters the hospital with a significantly higher chance of survival, conditional on being put on life support, what does the doctor do? Doctors usually choose to maximise the potential for life. Only in this rare scenario should the withdrawal of LSMT be permitted against a child’s best interests. The doctor should have legal immunity if a reasonable decision is made—ie one that would be accepted by a body of independent medical experts. This has been acknowledged by UK law (Airedale NHS Trust v Bland [1993] AC 789, [1993] 1 All ER 821; R v Cambridge Health Authority, ex p B [1995] EWCA Civ 49, [1995] 2 All ER 129).
Parents
The notion of parental ‘rights’ and the importance of parental responsibility has long been recognised internationally. Some argue that parenting has a teleological basis and is a good in itself, and that parents accordingly have an intrinsic
right to make decisions for their children (Stephen Erickson, ‘The wrong of rights: the moral authority of the family’, The Journal of Medicine and Philosophy
(2010) vol 35, no 5, pp600-616). Bioethicists such as H Tristram Engelhardt support the importance of parental rights in medical decisions (The Foundations of Bioethics
(2nd edition, Oxford University Press, 1996). These views are rooted in the philosophies of John Locke about the nature of self-ownership; Locke claims that producers have rights of ownership over the products (eg children) that their labours
create. Fraser Nelson (editor of The Spectator
) argued for an ‘Alfie’s Law’ which would give parents the ‘right’ to take their children where they wish once the courts had defined ‘best interests’ as death (‘The agony of Alfie Evans’ parents
was made worse by bad law’, The Spectator
, 28 April 2018). Such arguments seem outdated and/or morally flawed. Parental ‘rights’ are, morally, not rights at all. A defensible moral claim is that the role of parents is to protect the child, but this does not give parents a
‘right’. Parents do not hold rights over
the child; they hold rights on behalf of
the child—parents’ ‘rights’ are merely a manifestation of the child’s rights. English law gives responsibility—or quasi-rights—to parents to decide medical treatment on behalf of their child because they
are presumed to be the best judges of their child’s best interests. However, this presumption has to be rebuttable. Otherwise, parents could take decisions that could flatly contradict their child’s best interests. Allowing parents
to be the sole final arbiter would mean that parents’ duties and responsibilities would trump their child’s rights. As the landmark US case of Prince v Massachusetts
(321 US 158 (1944)) states at [170]: ‘Parents may be free to become martyrs themselves. But it does not follow that they are free, in identical circumstances, to make martyrs of their children’.
Doctors & parents
Although neither doctors nor parents should ever be the sole final arbiter, if there is agreement between them on the child’s best interests, they should collectively be the final arbiter. Such agreement is very common and is the preferred outcome. Any procedural improvements should therefore start by trying to ensure that agreement is reached as often as possible.
Some disagreements between doctors and parents are inevitable—but conflict should not be. How to handle disagreement is therefore crucial. A study of neonatal intensive care in the Netherlands found that there was a disagreement between family and doctors in 12% of cases; however, after misunderstandings were ironed out, facts were agreed upon, and more meetings were held, agreement was eventually reached in all cases, and none went to court (‘Conflicts about end-of-life decisions in NICUs in the Netherlands’, American Academy of Pediatrics (2009) vol 124, no 1). In striving for this ideal, mediation and conciliation should be available to encourage effective communication. The intense stress and natural emotional response to a child’s illness can lead to poor articulation from parents (and doctors) about why they hold different views. Vital discussions may not take place, with positions becoming so entrenched that disagreement becomes insoluble. An external mediator would help clarify the facts and facilitate non-confrontational communication in an attempt to successfully negotiate an accepted outcome. Dominic Wilkinson suggests an ‘overarching ethical framework’ as ‘mediation should not be towards mere agreement but towards an ethical outcome’ (D Wilkinson, S Barclay and J Savulescu, ‘Disagreement, mediation, arbitration: resolving disputes about medical treatment’, The Lancet (2018), vol 391, issue 10137, pp2302-2305). Access to bioethical experts and psychiatrists may also help untangle moral conundrums and aid the mediation process. The aim should be to reach agreement and, if it is reached, there would be no need for a further final arbiter.
Judges
When parents and doctors are unable to agree on the future of a terminally or incurably ill child, a final arbiter becomes necessary. In the UK, this responsibility lies with judges. In accordance with the stipulations of ChA 1989, their role is: ‘…to take over the parent’s duty to give or withhold consent in the best interests of the child. It is the role and duty of the court to do so and to exercise its own independent and objective judgement.’
UK judges have been extremely sensitive, thorough and reasonable when making these decisions (for example, Evans and another v Alder Hey Children's NHS Foundation Trust and another
[2018] EWCA Civ 805, [2018] All ER (D) 66 (Apr) at para [12]). John J Paris praises them highly, singling out their ‘consistency and attention to what matters most (the interests of the child)’ (J J Paris, J Ahluwalia, B M Cummings, M
P Moreland and D J Wilkinson, ‘The Charlie Gard case: British and American approaches to court resolution of disputes over medical decisions’, Journal of Perinatology
(2017) vol 37, no 12, pp1268-1271). However, few believe that judges are the ideal arbiters for this specific type of conflict, which is rife with medical and ethical complexities. Thaddeus Pope argues that ‘there is broad consensus that
courts lack the requisite expertise and responsiveness necessary to engage in de novo
review of these medical treatment decisions’ (T Pope, ‘Texas Advance Directives Act: nearly a model dispute resolution mechanism for intractable medical futility conflicts’, QUT Law Review
(2016) vol 16, no 1, pp22-53). Lord Mustill spoke of ‘the acute unease’ he felt while navigating his ‘way through the legal and ethical maze’ in Airedale NHS Trust v Bland
(p887). Other judges may feel likewise.
The cumbersome court process is not ideally suited to sensitive bioethical issues—yet judges are forced to work within this flawed process. The adversarial system is inappropriate in end-of-life decisions; it is crude and often very time-consuming. Lord Bingham notes that ‘distress and humiliation’ is compounded due to ‘the unpleasantness of antagonistic litigation’ that forces parties to fight a life-and-death legal conflict (Tom Bingham, The Rule of Law (2010), p88). The Charlie Gard case lasted a year, and the Alfie Evans case, 23 months. Such delays can allow an inappropriate public storm to brew, with Matthew Scott describing ‘unsavoury and unscrupulous actors on both sides of the Atlantic’ who ruthlessly exploited the desperation of Alfie’s parents with their own ‘dubious motives’ (M Scott, ‘The Tragic Case of Alfie Evans’, (Quilette, 28 April 2018)). Social media can turn a sensitive personal issue into a grotesque public spectacle—with the defenceless child’s best interests being disregarded amid an uncontrollable frenzy of fake news, death threats, and disreputable religious bigotry. Vicious abuse directed towards the doctors, parents, and judges can ensure there are no winners in the current adversarial system where there is usually one.
Furthermore, lengthy court proceedings are often not in the best interests of the child, especially in the rare cases where parents object to potentially life-saving treatment for their child. Although UK courts have given permission for vital blood
transfusions to be administered to children despite the religious objections of their Jehovah Witness parents (O (a minor) (medical treatment), Re
[1993] 2 FLR 149; S (a minor) (medical treatment), Re
[1993 ] 1 FLR 376; Camden London Borough Council v R
(a minor) [1993] 2 FLR 757), sometimes help comes too late. In July 2017, a 14-year-old girl’s parents (Moorish Scientists) refused chemotherapy for her growing brain tumour, wanting instead to treat her themselves with frankincense, turmeric
and homemade tea. Over a year after the initial disagreement, and after several court appearances in which it made clear that the girl’s condition was deteriorating rapidly, a judge finally ordered chemotherapy to commence. However, the
girl was already in a coma and on a ventilator, dying nine days later. The alleged words of William Gladstone are especially pertinent in such tragic cases: ‘Justice delayed is justice denied’.
A proposal
The Texas Advance Directives Act (TADA) contains a conflict procedure with safe harbour legal immunity for following it. The proposal outlined below is a modified version of TADA that could create an effective, fair dispute resolution mechanism, improving on both TADA and the current UK system. Where an intractable dispute between doctors and parents arises, the following process should be followed:
- The physician(s) refer(s) the dispute to a review committee comprised of doctors in the hospital.
- The review committee (which the physician(s) cannot be part of) holds an open meeting, in which the physician(s) and the parents may express their views.
- The review committee makes its decision based on the child’s best interests and provides a written explanation.
The first two steps mirror TADA, but the third differs by introducing a decision-making criterion. TADA does not specify any guidelines by which these decisions should be made and huge variations in decision-making criteria have already been well documented across US intensive care units. The UK ‘best interests’ standard provides a clear criterion, ensuring that all decisions are based on the same standard.TADA then states that if the decision to withdraw LSMT is made, the parents have ten days to find another facility for the child before LSMT is eventually withdrawn. My proposal continues as follows:
If the review committee decision is accepted by both the physician(s) and the parents, LSMT is given or withdrawn accordingly—with no transfer to another facility being permissible if this would be irreconcilable with the child’s best interests. If either the physician(s) or the parents are not satisfied with the decision, either could appeal to a special tribunal with at least three independent professionals not associated with the hospital:
- The independent, appellate tribunal holds an open meeting.
- The tribunal’s decision must again be made based on the child’s best interests, with a published written explanation.
- LSMT is given or withdrawn accordingly.
Unlike TADA, this appellate tribunal would be, just like a UK court, a forum for a totally neutral, independent, and objective decision in a child’s best interests. As the original hospital review committee is comprised of hospital clinicians and administrators, they can be ‘overwhelmingly internal and intramural bodies’ who are not impartial and could be biased towards the interests of hospital management. Thus, giving such review committees quasi-absolute power (as TADA does) over LSMT decisions goes against fundamental notions of fairness. As the US Supreme Court held in Caperton v AT Massey Coal, Co 556 US 868 (2009): ‘it is axiomatic that a … fair tribunal is a basic requirement of due process.’
In the Wyatt case, the Court of Appeal judged at [87] that ‘the term “best interests” encompasses medical, emotional, and all other welfare issues’. Therefore, the professions represented in the appellate tribunal should mirror this definition. Thus, a highly specialised medical professional is necessary in order to effectively understand and/or critique the prognosis of the doctors. A psychiatrist or counsellor should deal with emotional and welfare issues. A third place should be occupied by a lawyer specialising in bioethics to help the tribunal navigate the maze of legal, medical and ethical complexities.
Such an independent, objective tribunal would be better suited to apply ‘best interests’ than judges—who would then be free to use their vital skills elsewhere. The divisive adversarial system would be avoided. The cost of legal
advocates would be eliminated. The process would be much quicker, as the review committee would be readily available and an appellate tribunal would be created specifically to deal with medical futility decisions. This would free up healthcare
resources and reduce the chances of an indecorous public reaction. Judges would only become involved if the structure and procedural guidelines are not being followed.
Lord Neuberger reaffirmed in the Neill Lecture 2017 that ‘parliamentary sovereignty is undoubtedly the foundational principle of our constitution.’ Thus, an Act of Parliament is the only way that this proposed process can become law, and fresh legislative intervention is desirable in this area. Current uncertainty is ‘chilling’, deterring many clinicians from proceeding without parental consent. New law would therefore enshrine the ‘best interests’ standard in legislation, and give doctors confidence that legal immunity would be guaranteed if they follow the process and its procedural guidelines. The position in triage situations, a rare exception to the best interests test and only briefly touched upon in this paper, is also legally obscure. While it has been acknowledged that LSMT may be withdrawn in an emergency (if a reasonable decision is made), clarification by an Act of Parliament is still highly preferable. Deciding upon a ‘final arbiter’ is becoming more and more imperative, and the current courts are simply not adapted for this task. An alternative adjudicatory dispute process should ‘steer a course between the Scylla of judicial review and the Charybdis of unfettered, unexamined physician discretion’ (T Mayo, ‘The Baby Doe Rules and Texas's “Futility Law” in the NICU’, Georgia State University Law Review (2009) vol 25, no 4, p1010). This proposal does just that.
Conclusion
A fusion between a fairer version of TADA and the UK recognised standard of ‘best interests’ should be the process by which medical futility dispute decisions are made. If disputes continue to be slowly forced through the cumbersome adversarial courts, futility cases will continue to generate public notoriety and be unsatisfactory for all. Instead, the final arbiter should be an appellate tribunal of independent quasi-judges with wide ranging expertise—a body more appropriate than any other for deciding these ethically difficult cases. The exemplary work of UK judges in promoting the ‘self-interests’ test in common law has been globally pioneering, but their work in this domain can now cease—they should use their much-needed skills in more suitable areas. No one is ever a winner in these desperately sad cases, but minimal overall harm can and should be achieved. The proposal suggested above would not only ensure that all decisions are based on a child’s best interests but would also, by reducing expense, time and anguish, serve the best interests of all the children involved better than the present process often does.
David Edwardes-Ker was awarded the 2018 Westminster School—Neuberger Law Prize earlier this year and has a place to study law at Trinity College, Cambridge.
