Is the best interests test for the care of critically ill children fit for purpose?
by Alison Howells
I. Introduction
The views of both a child’s parents and those of the medical profession play a critical role in determining whether medical treatment is in the best interests of a child. The importance of this arrangement is substantially increased where the child is critically ill.
However, it is not always possible for parents and medical professionals to agree as to what the best interests of the child are. This conflict has been highlighted by the recent cases of Alfie Evans [1], Charlie Guard [2] and Isaiah Haastrup [3]. These legal cases piqued the interest of philosophers, ethicists, academics and the wider public and created considerable support for a shift in the legal position. This warrants a critical analysis of the best interests test for the care of critically ill children.
In this blog post I will focus on instances of conflict that arise where the child is very young, and therefore is not competent to speak on their own behalf. I will argue that the best interests test for the care of critically ill children, though not without criticism, is fit for purpose. I will begin by outlining the debate around the best interests of the child. I will then analyse the role of parents, doctors and the courts when making decisions about the best interests of the child, as well as how this has been determined in decisions concerning the medical treatment of critically ill children. Then I will consider whether or not the best interests test is fit for purpose, or if the courts should adopt the ‘serious risk of significant harm’ approach as proposed in Gard [4], concluding, that although the best interests test may not be free from criticism, the harm threshold is not the solution to these criticisms.
II. Outlining the debate
In the vast majority of situations involving the medical treatment of young people there will be agreement between medical practitioners and the child’s parents, so as to enable (or cease) the proposed treatment. This produces the desirable result that the choice of treatment is a joint decision. There are, however, cases in which there is a dispute between the treating practitioners and the child’s parents. Where this conflict arises, and cannot be resolved between the parties, the courts are called upon to make a decision about what is in the best interests of the child.
The debate goes further than this though; these cases raise complex issues about the boundaries between private family matters and state intervention. They demand consideration of the extent to which we give parents the freedom to decide about their children and when the child’s welfare demands limitations to that freedom. This is particularly important in a liberal pluralist society, where considerable importance is placed on people being able to freely form and follow their own choices. In Portsmouth NHS Trust v Wyatt [5], Hedley J said that these cases “evoke some of the fundamental principles that undergird our humanity. They are not to be found in Acts of Parliament or decisions of the courts but in the deep recesses of the common psyche of humanity.” [6]
III. Best interests
The best interests of the child is one of the most important concepts in both child and medical law, but remains one of the most difficult to explain. The concept has no statutory definition in Scots law, but has been widely defined by academics, professions and in case law. In its most basic form, the best interest test constitutes a literal demand that a decision is made to produce the outcome that is best for the child. In medical decisions, it is customary to assume that a best child’s interests are served by measures that prolong life. [7] However, the ultimate outcome remains subject to what the individual circumstances of the case demand. When determining the best interests of a child, medical professionals may follow the guidance provided by the British Medical Association, which has held the best interests test to include consideration of: the patient’s physical and emotional needs; clinical judgment about the effectiveness of the proposed treatment, and its alternatives; where there is more than one option, which option is least restrictive of the patient’s future choices; the likelihood and extent of improvement in the patient’s condition if treatment is provided; risks and side effects; the views of parents and others who are close to the patient; relevant information about the patient’s religious or cultural background; and the views of other health care professionals. [8]
Court precedent, however, deems the best interest test to have been “best encapsulated” [9] by Baroness Hale in Aintree University Hospital NHS Trust v James [2013] UKSC 67, namely:
[39] The most that can be said, therefore, is that in considering the best interests of this particular patient at this particular time, decision-makers must look at his welfare in the widest sense, not just medical but social and psychological; they must consider the nature of the medical treatment in question, what it involves and its prospects of success; they must consider what the outcome of that treatment for the patient is likely to be; they must try and put themselves in the place of the individual patient and ask what his attitude towards the treatment is or would be likely to be; and they must consult others who are looking after him or are interested in his welfare, in particular for their view of what his attitude would be.
This authority was reviewed and distilled by MacDonald J in Kings College Hospital NHS Foundation Trust v Thomas [2018] EWHC 147 (Fam) where it was held that the best interests test “will include ‘medical, emotional, sensory and instinctive considerations’ as well as the rebuttable presumption of the preservation of life, the nature of the medical treatment (what it involves, its prospects of success and the likely outcome for the patient) and the views of both the doctors and the parents”. [10]
Diagram One [11]
IV. Who is involved in determining the best interests of the child?
A. Parents
Under the Children (Scotland) Act 1995, parents have responsibility for ensuring that their children receive appropriate medical treatment. [12] This correlates with their “right to determine whether or not to seek medical advice in respect of their child, and, having received advice, to give or withhold consent to medical treatment.” [13] This is consistent with the belief of the court in the overwhelming majority of cases that parents are “the best judges of a child’s welfare.” [14] However, the parent’s right to consent to a child’s medical treatment is not absolute. In Gillick, it was held that “parental rights to control a child do not exist for the benefit of the parent but for the benefit of the child” [15] and “must be exercised in accordance with the welfare principle and can be challenged, even overridden, if it be not”. [16]
B. The medical profession
In the past, the idea that ‘doctor knows best’ was prevalent amongst medical practitioners and their patients. Whilst the right of patients to make decisions about their medical care have significantly advanced in recent decades, and continues to do so, the idea still resonates in some areas of practice. When providing care for, and making decisions in relation to, a critically ill child, the medical practitioner has a duty to promote the child’s welfare in accordance with the values of the profession as detailed in Good Medical Practice. [17] Originally grounded in common law, this duty can now be found in ‘0-18 years: guidance for all doctors’, as introduced in 2007 by the General Medical Council. This guidance states that “doctors should always act in the best interests of children in all decisions which may affect them”. [18] To help determine the best interests of the child they must consider “the views of the child, parent or other relevant persons [19]; the cultural, religious and other beliefs and values of the child or parents [20]; the views of other healthcare professionals involved in providing care to the child or young person and of any other professionals who have an interest in their welfare [21]; and which choice, if there is more than one, will least restrict the child or young person’s future options”. [22] This list is not exhaustive and the weight attached to each point will depend on the circumstances. [23]
Where a decision has to be made about the continuation of the treatment, practitioners may refer to guidance provided by the General Medical Council including Good Medical Practice (2013); Consent: Patients and Doctors Making Decisions Together (2008); and Treatment and Care Towards the End of Life: Good Practice in Decision-Making (2010). This guidance provides a framework to support practitioners. They may also wish to refer to Making Decisions to Limit Treatment in Life-limiting and Life-threatening Conditions in Children: A Framework for Practice [24], guidance prepared by the Royal College of Paediatrics and Child Health, which states that treatment is no longer in the child’s best interests if it is unable or unlikely to prolong life significantly or where treatment may be able to prolong life significantly but will not alleviate the burdens associated with the illness or treatment itself. [25]
C. The courts
If a child’s parents refuse to consent to a treatment that the doctors believe to be in the child’s best interests, or to the withdrawal of treatment, the relevant hospital trust can apply to the court for a declaration that treatment without consent would be lawful. The question for the court is, therefore, which course of action is in the child’s best interests. As ‘parens patriae’, the court has the authority to act as the legal guardian of children and to protect their interests. This jurisdiction is often described as “theoretically limitless”. [26] Court’s may also make a specific issue order requiring or withholding medical treatment under the Children (Scotland) Act 1995. [27]
V. Current practice
While the concept of the best interests of the child continues to evolve, the law on the best interests of a critically ill child has been settled for a long time. There is a significant volume of case law in which the court have considered what is in the best interests of the child. These judgements demonstrate a great deal of consideration and sensitivity towards the parents of the child.
A. Gard
Great Ormond Street Hospital for Children NHS Foundation Trust v Yates [2017] EWCA Civ 410 concerned a disagreement between the parents and doctors of a critically ill infant with mitochondrial disease. The parents asserted that it was in his best interests to receive an experimental treatment in the US, which was thought by the child’s parents to have the potential to improve the child’s condition. The appellants argued that in situations where there is a choice of treatments it should fall to parents, rather than the courts or doctors, to make the choice as to whether or not treatment is in the child’s best interests. [28] They also submitted that judicial interference should only be permissible where a court is satisfied that the decision made by a child’s parents was likely to cause the child significant harm, [29] and the hospital’s application to prevent the delivery of a therapy which it did not, itself, intend to provide, was outside its power as a public authority. [30]
It was held that the legal test which applied, and would always apply, was whether treatment would be in the child’s best interests. In the circumstances before them, the court agreed that if the child were to be taken to the US for treatment, he would be exposed to continuing pain, suffering and distress without any realistic prospect of improvement. Treatment was, therefore, not in his best interests. [31]
It was also held that the hospital had not acted outside its powers. The application made by the NHS trust concerned the removal of treatment in the UK rather than the proposed experimental treatment. It was the parents’ who had raised the issue of US therapy before the court. Furthermore, the fact that the US therapy had represented a large part of the discussion in the proceedings demonstrated that the parents’ views were considered a central part of the best interests test. [32]
The applicants attempted to appeal this decision to the UK Supreme Court. However, after considering the submissions made by the parties, the Supreme Court declined permission to appeal. In explaining the decision, Lady Hale noted that whilst anyone was “bound to feel utmost sympathy for devoted parents who are desperate to explore every possible way of preserving the life of their gravely ill but much loved baby son, as judges, the role of the court was to apply the law”. [33] They therefore endorsed the approach of the lower courts as having correctly done so.
B. Evans
In the case of Alfie Evans [34] the NHS trust involved in Alfie’s treatment sought a declaration to the effect that continued ventilatory support was not in his best interests, and therefore discontinuing such treatment would be lawful. His parents had argued that they should be allowed to take Alfie to Italy, where he could receive further treatment.
Justice Hayden held that Alfie’s brain had been devastated by progressive degeneration and that this presented obvious challenges to taking him to Italy including the increased vulnerability inherent in removing him from intensive care and the maintenance of his anticonvulsant regime. [35] There was also no real prospect of successful treatment that justified these challenges. [36] The alternative advanced by the parents was therefore held to be irreconcilable with the child’s best interests. [37]
It was in the best interests of the child to discontinue treatment, since further treatment was “futile”. [38] The continuation of treatment would “compromise his future dignity” and “failed to respect [his] autonomy”. [39]
C. Haastrup
Isaiah Haastrup [40] was born in February 2017 with irreversible brain damage and had since been on life support. His parents applied for permission to appeal against the decision of the courts and medical professionals involved in Isaiah’s care that life-sustaining treatment was no longer in his best interests.
Justice MacDonald held that the court had arrived at a reasoned decision after hearing extensive evidence from experts and medical professionals, who stated that Isaiah’s brain injury was irreversible and would not improve with treatment. [41] Therefore, it was in the child’s best interests to remove treatment.
As this had been the finding of the previous judgement, there was no real prospects of a successful appeal and therefore the appeal was refused.
D. Defence of the orthodoxy
Gard [42], Evans [43] and Haastrup [44] all raise legitimate concerns about the current threshold and test for determining the best outcome in decisions about the medical treatment of critically ill children. The cases provided the courts with an opportunity to review the law. However, the decision was taken in all three of the judgements to affirm the well-established position that the threshold for judicial intervention and test used to determine the outcome of a decision in legal disagreements about a child’s medical care is the best interests of the child.
VI. Reform and the doctrine of serious harm
A. Reform
In response to their experience, both Charlie and Alfie’s parents argued for reform of the current law, whereby the threshold for judicial interference in medical decisions concerning critically ill children would increase from “the best interests test” to one of “serious harm”. [45] While these efforts have so far been unsuccessful, Parliament has acknowledged the importance of an analysis of how effective the “best interests” test is. [46]
B. Serious harm
The serious harm principle provides an alternative threshold for state intervention in medical decisions concerning critically ill children. The serious harm threshold holds parents as the primary decision-maker in decisions about the medical treatment of a child. It requires the state to refrain from interfering with or overriding parental decisions unless their decisions will result in “significant (or serious) harm” to the child. [47] This threshold is premised on the idea that “the only purpose for which power can rightfully be exercised over any member of a civilized community, against his will, is to prevent harm to others.” [48] This means that only harm of a sufficient seriousness warrants state intervention.
The point at which harm is sufficiently serious to warrant state intervention is widely debated amongst academics and professionals. Feinberg suggests that serious harm exists where interests necessary for more ultimate goals including physical health and vigour, integrity and normal functioning of one’s body, absence of pain, suffering or grotesque disfigurement, intellectual acuity, and emotional stability are at risk. [49] Others including Wing have argued that intervention is only justified where ‘immediate action is necessary” [50] or children are “deprived of their basic needs”. [51]
C. In favour of a harm threshold
There are several reasons to give the biggest weight to parents’ interests and views in decision-making.
(i) Proximity to the child
The parent-child relationship places parents in a position of unique proximity to the child. This proximity distinguishes the parent-child relationship from that of doctor-patient and court to child. Diekema has argued that this proximity means parents are “best placed” to determine what is in their child’s best interests. [52] Wilkinson has also argued that parents are in a “unique epistemic position”, which enables them to “best assess the child’s quality of life and predict their ability to cope with treatment”. [53] If the parent is best placed to determine what is in the child’s best interests, they should be granted status as the primary decision-maker, and therefore to have their decisions respected, without interference.
As a result of this proximity, it is a child’s family who must deal with the consequences that flow from decisions about a child’s medical care. According to Auckland and Gold, this implication lends significant weight to the argument that adults should have a considerable say over what treatment the child receives.[54] Salter has argued that as a consequence of their role as “central leaders and bearers of responsibility and accountability” in the family, parents are also “the central bearers of these decisional consequences”. [55] It is therefore essential that the law supports parents as far as possible as decision-makers.
(ii) Article 8
It has also been argued that by reforming the law to adopt the “significant harm” threshold the law could better protect parents’ right to respect for privacy and family life. [56] The current best interests test has been viewed as a particularly low threshold. As a result, parental decisions that should be protected by Article 8 are vulnerable to court interference. This argument was put forward in the Gard case, where it was argued that “if the state can, without the highest of justification, intrude into so private an area of human life as a joint parental decision made about one’s child’s upbringing, the scope for protection against state interference afforded by our most basic constitutional values, as well as by Article 8 ECHR, is considerably eroded”. [57]
Article 8 also includes the right to autonomy. Parental autonomy requires parents to be free to make decisions about their children independently. [58] In ex parte Williamson [59] Lady Hale held that “in a free society, parents should be allowed a large measure of autonomy in the way in which they discharge their parental responsibilities”. [60] The restrictions placed on parental rights and views in children’s medical decisions in some ways appear to undermine this right, resulting in some parents feeling disempowered. In the Gard case, the parents of the critically ill child expressed the view that their parental rights had been “stripped away”. [61] Elizabeth Anderson, head of campaigns at Parliament Street, has argued that under the current law “parents are being side-lined in the care of their children” and proposes that a move to the harm threshold would “re-empower parents to have a say in the treatment of their children”. [62]
The weight of these arguments is limited in so far as parental rights over the child are not absolute and have never been treated as such. [63] In the debate surrounding the recent cases of Gard, Evans and Haastrup, the position of the parents has often been framed in terms of ‘parental rights’. However, parental rights exist only for the purpose of parents fulfilling their responsibilities. [64] And while it is true that the Article 8 rights of some parents may be engaged in these instances, as affirmed by Lady Hale in the refused appeal of Gard, “where the rights under Article 8 of the parents and the child are at stake, the child’s rights must be the paramount consideration and if there is any conflict between them the child’s interests must prevail”. [65]
(iii) Transparency and reflecting practice
Previous court decisions, and medical practitioners, have already used some form of harm threshold. For example, in Re King [66], Baker J held that “the state has no business interfering with the exercise of parental responsibility unless the child is suffering or is likely to suffer significant harm”. [67] Wilkinson has also observed that practitioners only override parent’s decisions “at point of real risk of harm”. [68] He uses the examples of immunisation and new-born screening tests. He argues that while these treatments are in the child’s best interests, health professionals will rarely, if ever, invoke child protection proceedings if a parent refuses these treatments. If the significant harm threshold is already applied in practice, it can be argued that this should be reflected in law in order to increase transparency and accountability.
(iv) Value decisions
Decisions about the best interests of a critically ill child are questions of value. These decisions provide space for reasonable disagreement, since different people have different views about what makes life meaningful. According to Goold, decisions about the best interests of a critically ill children are decisions that test our commitment to respect for plurality of values. [69] In order to ensure others are fully respected in a liberal pluralistic society, people must be free to make their own decisions, including decisions about their children. Similarly, in Re L (Care: Threshold Criteria) [70] Hedley J held that “society must be willing to tolerate very diverse standards of parenting, including the eccentric, the barely adequate and the inconsistent”. [71]
If the views of others are to be fully respected, it is problematic for courts to be tasked with identifying a single best course of action, as this suggests that there is a right answer to what is important in life and what quality of life is worth living. By allowing parents to decide what is in the child’s best interests, the harm threshold better respects a parent’s personal beliefs and values, if not those of society as a whole. [72]
D. Objections to a harm threshold
(i) Sufficient and appropriate
The “best interests” test provides a well-established analytical framework, which has developed over decades and allows harm to be considered within a wider context of other considerations.[73] There is no need to incorporate a harm threshold into medical decision-making in order to prevent unjustified interference of the courts because the courts already exercise their discretion to determine whether or not they hear a case sparingly. Applicants do not bring frivolous applications and the court does not have to give leave to hear the case when they do. This allows them to avoid hearing applications without merit. Taylor has argued that this discretion is already used to “filter out vexatious or unwarranted applications” whilst at the same time preventing the creation of any “substantial hurdles to the applicant with genuine welfare concerns”. [74]
It can be argued that the best interests test already sufficiently takes account of parental views and, as a result, the best interests test is fit for purpose. In Re Wyatt [75], Hedley J held that “parental wishes should be accommodated as far as professional judgement and conscience will permit, but no further”. [76] This means that although some parents may feel disempowered where what is deemed to be in the child’s best interests does not reflect their views, this, in and of itself, is not enough to demonstrate the law, as it stands, is not fit for purpose. Whilst the protection of autonomy in a liberal society may allow for parents “to become martyrs” of their own beliefs, “it does not follow that they are free in identical circumstances to make martyrs of their children”. [77]
(ii) Change will make no practical difference
As already mentioned, the law and medical practitioners already use some form of harm threshold. While I have already noted that some see this as a reason to reform the law, others might consider this as a reason not to change the law. Wilkinson observes that professionals generally refrain from seeking court intervention until they are worried that the child will be harmed by their parents’ wishes. [78] In Gard [79], it was held that if the parents were to take their child to the US and to allow him to undergo experimental treatment, this would “expose him to continued pain, suffering and distress”. [80] This provides evidences that a de facto harm threshold is already being applied by the courts. For this reason, Foster has argued that it is unnecessary to change the current threshold for judicial intervention. [81]
The court has also demonstrated a clear reluctance to interfere where a person exercises their parental responsibility and, where possible, has protected the parents’ decisions. For example, in Re King Baker J held that it “is no business of this court, or any other public authority, to interfere with their decision”.[82] More recently in BC v EF [83], despite the finding that a vaccination was in the children’s best interests, the court declined to enforce the order, holding that the decision was to be made by the parents. The framing of the basis on which the court can intervene will therefore make little difference, suggesting that the best interests test remains fit for purpose.
(iii) Parental vulnerability and emotional implications
There is also reason to believe that it is not appropriate to allow parents to make the ultimate decision in medical decisions concerning a critically ill child. Parent’s judgements are often compromised in these situations and Herring believes that the lengths they go to, in order to protect their children “exposes them to vulnerabilities in terms of time, emotional energy and money spent” that should be considered throughout judicial proceedings. [84] Parental vulnerability is best recognised through the best interests test and courts are already “mindful that the views of the parents may, understandably, be coloured by emotion or sentiment”. [85] For example, in Evans [86], Hayden J held that the parents of the child understood the significance of his brain scan, but “time and again avoided confronting them.” [87] These considerations require some form of restriction on the effect we give to the views of the parents, albeit in a sensitive way. Arguably, the best interests test does this by giving weight, but not providing an overriding power, to the views of the parents. The best interests test is therefore still fit for purpose.
(iv) Change will be counter-productive
Some also believe that change will produce adverse effects in practice, since the harm threshold will remove the emphasis from what is best for a child and place it on what is harmful to them. Birchley suggests that this shift would require the court to use greater “evaluative overtones”, resulting in parental decisions being explicitly characterised as harmful. [88] Not only would this be “unnecessarily harsh” on vulnerable parents, but it would provide “no practical gain” for any parties involved in proceedings. [89] The harm test might also jeopardise the wellbeing of children. Lowe and Juss have argued that the policy of the law is to “protect children against wrong-headed parents”. [90] The law would not be able to do so under the significant harm test, since it requires parents to have the overriding say in their child’s treatment, and therefore “allowing for the child’s interests to be compromised for the sake of the interests of parents or other family members”. [91]
(v) Shared decision-making
Support for the move to a harm threshold is grounded in the “desire to make parents the primary arbiters of a child’s welfare”. [92] If the law were to prioritise the beliefs of the parents by adopting a test and threshold of significant harm, this would undermine the current shared decision-making process. The default approach for all parties involved in making medical decisions about an ill child, which is effective in the majority of cases, is to come together and build a consensus as to what is in the best interests of the child. [93] This is grounded by the fact that “the law regards the upbringing of children not as a matter of exclusive parental rights, to be defended unless forfeited, but as a collaborative responsibility in which parents take the leading role”. [94]
If the law shifts in order to give parents the final say in medical decisions, there is a risk it will change the way communications between the medical profession and the child’s parents take place. It also increases the likelihood of the views of the medical profession becoming completely disregarded. Glosser and Pope have also argued that this change will result in the breakdown of the current inquisitorial process in decision-making, where, instead of everyone trying to identify the best interests of the child, the process would become adversarial and driven by argumentation. [95] These criticisms are not applicable to the current best interests test, making it fit for purpose in contemporary medical decision-making.
VII. Conclusion
The medical treatment of critically ill children raises complex value questions that go a lot deeper than the treatment at hand. Whilst no one is immune to the emotional plight of the parents, in the recent cases of Gard [96], Evans [97] and Haastrup [98], we must tread with caution in allowing these emotions to determine the legal regulation of medical decisions. While these cases raised legitimate concerns about parental freedom, it must be understood that although they do not always triumph, parental views are treated with sympathy, respect and play a significant role in determining the best interests of a child. The harm threshold may present a more philosophically justified standard in a liberal society. However, the counter-productive implications of such a reform on a practical level, including the undermining of the present shared decision-making process, as well as the large weight already afforded to the views of the parents all support the argument that the best interests test for the care of critically ill children remains fit for purpose.
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[1] Alder Hey Children’s NHS Foundation Trust v Evans [2018] EWHC 308 (Fam).
[2] Great Ormond Street Hospital for Children NHS Foundation Trust v Yates [2017] EWCA Civ 410.
[3] Kings College Hospital NHS Foundation Trust v Thomas [2018] EWHC 147 (Fam).
[4] Great Ormond Street Hospital for Children NHS Foundation Trust v Yates [2017] EWCA Civ 410.
[5] [2004] EWHC 2247 (Fam).
[6] Portsmouth NHS Trust v Wyatt [2004] EWHC 2247 (Fam), para 21.
[7] The British Medical Association, Children and Young People Ethics Toolkit (2016).
[8] The British Medical Association, children and young people ethics toolkit (2016).
[9] Alder Hey Children’s NHS Foundation Trust v Evans [2018] EWHC 308 (Fam), per Justice Hayden at para 48.
[10] Kings College Hospital NHS Foundation Trust v Thomas [2018] EWHC 127 (Fam), para 69.
[11] D Wilkinson, “In Defence of a Conditional Harm Threshold for Paediatric Decision-Making” in I Goold, J Herring and C Auckland, Parental Rights, Best Interests and Significant Harms: Great Ormond Street Hospital v Gard (2019).
[12] Children (Scotland) Act 1995, s 1(a).
[13] Gillick v West Norfolk and Wisbech AHA [1985] 3 W.L.R. 830, at 184.
[14] Gillick v West Norfolk and Wisbech AHA [1985] 3 W.L.R. 830, at 173.
[15] Gillick v West Norfolk and Wisbech AHA [1985] 3 W.L.R. 830, at 170.
[16] Gillick v West Norfolk and Wisbech AHA [1985] 3 W.L.R. 830, at 184.
[17] General Medical Council, Good Medical Practice (2013).
[18] General Medical Council, 0-18 years: guidance for all Doctors (2007), para 8.
[19] General Medical Council, 0-18 years: guidance for all Doctors (2007), para 12(a)-(c).
[20] General Medical Council, 0-18 years: guidance for all Doctors (2007), para 12(d).
[21] General Medical Council, 0-18 years: guidance for all Doctors (2007), para 12(e).
[22] General Medical Council, 0-18 years: guidance for all Doctors (2007), para 12(f).
[23] General Medical Council, 0-18 years: guidance for all Doctors (2007), para 13.
[24] Royal College of Paediatrics and Child Health, Making Decisions to Limit Treatment in Life-limiting and Life-threatening Conditions in Children: A Framework for Practice (2014).
[25] Royal College of Paediatrics and Child Health, Making Decisions to Limit Treatment in Life-limiting and Life-threatening Conditions in Children: A Framework for Practice (2014) at 3.1.3.
[26] Re R (A Minor) (Wardship: Consent to Treatment) [1992] Fam. 11, at [25].
[27] Children (Scotland) Act 1995, s 11.
[28] Great Ormond Street Hospital for Children NHS Foundation Trust v Yates [2017] EWCA Civ 410, para 66.
[29] Great Ormond Street Hospital for Children NHS Foundation Trust v Yates [2017] EWCA Civ 410, para 66.
[30] Great Ormond Street Hospital for Children NHS Foundation Trust v Yates [2017] EWCA Civ 410, para 84.
[31] Great Ormond Street Hospital for Children NHS Foundation Trust v Yates [2017] EWCA Civ 410, para 114.
[32] Great Ormond Street Hospital for Children NHS Foundation Trust v Yates [2017] EWCA Civ 410 para 118.
[33] UKSC, In the matter of Charlie Gard (Permission to Appeal Hearing) (2017).
[34] Alder Hey Children’s NHS Foundation Trust v Evans [2018] EWHC 308 (Fam).
[35] Alder Hey Children’s NHS Foundation Trust v Evans [2018] EWHC 308 (Fam), para 63.
[36] Alder Hey Children’s NHS Foundation Trust v Evans [2018] EWHC 308 (Fam), para 64.
[37] Alder Hey Children’s NHS Foundation Trust v Evans [2018] EWHC 308 (Fam), para 64.
[38] Alder Hey Children’s NHS Foundation Trust v Evans [2018] EWHC 308, para 66, Kings College Hospital NHS Foundation Trust v Thomas [2018] EWHC 147 (Fam), paras 12-13, and C Auckland, “Futility” in I Goold, J Herring and C Auckland, Parental Rights, Best Interests and Significant Harms: Great Ormond Street Hospital v Gard (2019).
[39] Alder Hey Children’s NHS Foundation Trust v Evans [2018] EWHC 308 (Fam), para 66.
[40] Kings College Hospital NHS Foundation Trust v Thomas [2018] EWHC 147 (Fam).
[41] Kings College Hospital NHS Foundation Trust v Thomas [2018] EWHC 147 (Fam), paras 12-13.
[42] Great Ormond Street Hospital for Children NHS Foundation Trust v Yates [2017] EWCA Civ 410.
[43] Alder Hey Children’s NHS Foundation Trust v Evans [2018] EWHC 308 (Fam).
[44] Kings College Hospital NHS Foundation Trust v Thomas [2018] EWHC 147 (Fam).
[45] The Charlie Gard Foundation, Charlie’s Law (2018).
[46] HL Deb 15 October 2018 vol 793 col 387.
[47] C Auckland and I Goold, Defining the Limits of parental authority: Charlie Gard, best interests and risk of significant harm threshold (2018), L.Q.R 2018,134(Jan) 37-42.
[48] J Stuart Mill, On Liberty and Utilitarianism (1993).
[49] J Feinberg, Harm to Others: The Moral Limits of the Criminal Law (1984).
[50] K Wing The Law and the Public’s Health (3rd ed) (1990).
[51] L Ross and T Aspinwall, Religious Exemptions to the Immunization Statutes: Balancing Public Health and Religious Freedom (1997).
[52] D Diekema, ‘Parental Refusals of Medical Treatment: The Harm Principle as Threshold for State Intervention’ (2004) 25 Philosophy of Medical Research and Practice 243, 244.
[53] D Wilkinson, “In Defence of a Conditional Harm Threshold Test for Paediatric Decision-Making” in I Goold, J Herring and C Auckland, Parental Rights, Best Interests and Significant Harms: Great Ormond Street Hospital v Gard (2019).
[54] C Auckland and I Goold, Parental rights, best interests and significant harms: who should have the final say over a child’s medical care? (2019) Cambridge Law Journal, 78 (2). pp. 287-323.
[55] E Salter, ‘Deciding for a Child: A Comprehensive Analysis of the Best Interest Standard’ (2012) 33 Theoretical Medicine and Bioethics 179, 181.
[56] European Convention on Human Rights, Article 8.
[57] UKSC, In the matter of Charlie Gard (Permission to Appeal Hearing) (2017).
[58] I Goold and J Herring, “General ethical theories: is respect for autonomy the most important ethical principle?” in Great Debates in Medical Law and Ethics (2nd ed) (2018).
[59] R. (on the application of Williamson) v Secretary of State for Education and Employment [2005] UKHL 15.
[60] R. (on the application of Williamson) v Secretary of State for Education and Employment [2005] UKHL 15, para 72.
[61] A Smith, The Daily Mail, Charlie Gard’s parents condemn Great Ormond Street’s ‘inhuman’ treatment of their son and say they have been stripped of their parental rights as they release new picture at his bedside (2017).
[62] H Christodoulou, The Sun, what are Charlie’s law and Alfie’s law, what rights would they give parents over their children’s care and who has backed them? (2018).
[63] Gillick v West Norfolk and Wisbech AHA [1985] 3 W.L.R. 830, at 184.
[64] The Children (Scotland) Act 1995, s 2(1).
[65] UKSC, In the matter of Charlie Gard (Permission to Appeal Hearing) (2017).
[66] [2014] EWHC 2964 (Fam).
[67] Re King (A Child) [2014] EWHC 2964 (Fam), para 31.
[68] D Wilkinson, “In Defence of a Conditional Harm Threshold Test for Paediatric Decision-Making” in I Goold, J Herring and C Auckland, Parental Rights, Best Interests and Significant Harms: Great Ormond Street Hospital v Gard (2019).
[69] I Goold, “Evaluating Best Interests’ as a Threshold for Judicial Intervention in Medical Decision-Making on Behalf of Children” in in I Goold, J Herring and C Auckland, Parental Rights, Best Interests and Significant Harms: Great Ormond Street Hospital v Gard (2019).
[70] Re L (Care: Threshold Criteria) [2007] 1 F.L.R.
[71] [2007] 1 F.L.R. at 50.
[72] I Goold, “Evaluating Best Interests’ as a Threshold for Judicial Intervention in Medical Decision-Making on Behalf of Children” in I Goold, J Herring and C Auckland, Parental Rights, Best Interests and Significant Harms: Great Ormond Street Hospital v Gard (2019).
[73] C Auckland and I Goold, Defining the Limits of parental authority: Charlie Gard, best interests and risk of significant harm threshold (2018), L.Q.R 2018,134(Jan) 37-42.
[74] R Taylor, “Parental Decisions and Court Jurisdiction: Best Interests or Significant Harm?” in in I Goold, J Herring and C Auckland, Parental Rights, Best Interests and Significant Harms: Great Ormond Street Hospital v Gard (2019).
[75] Portsmouth NHS Trust v Wyatt [2004] EWHC 2247 (Fam).
[76] Portsmouth NHS Trust v Wyatt [2004] EWHC 2247 (Fam), at 40.
[77] Prince v Massachusetts 321 US 158 at 170 as quoted in Re E [1993] 1 FLR 386, at 391.
[78] D Wilkinson, “In Defence of a Conditional Harm Threshold for Paediatric Decision-Making” in I Goold, J Herring and C Auckland, Parental Rights, Best Interests and Significant Harms: Great Ormond Street Hospital v Gard (2019).
[79] Great Ormond Street Hospital for Children NHS Foundation Trust v Yates [2017] EWCA Civ 410.
[80] Great Ormond Street Hospital for Children NHS Foundation Trust v Yates [2017] EWCA Civ 410 at 114.
[81] C Foster, Harm: As Indeterminate as “Best Interests”, but Useful for Triage (2016) 42 Journal of Medical Ethics 121.
[82] Re King (A child) [2014] EWHC 2964 (Fam), at 34.
[83] (Parental Responsibility: Immunisation) [2017] EWFC 49.
[84] J Herring, ‘Parental Responsibility, Hyper-Parenting, and the Role of Technology’ in R Brownsword, E Scotford and K Yeung (eds), Oxford Handbook of Law, Regulation and Technology (2017).
[85] King’s College Hospital NHS Foundation v Thomas [2018] EWHC 127 (Fam), at para 69.
[86] Alder Hey Children’s NHS Foundation Trust v Evans [2018] EWHC 308 (Fam).
[87] Alder Hey Children’s NHS Foundation Trust v Evans [2018] EWHC 308 (Fam) at 38.
[88] G Birchley, ‘The Harm Threshold and Parents’ Obligation to Benefit their Children’ (2016) Journal of Medical Ethics 111, 113.
[89] K Gollop and S Pope, Charlie Gard, Alfie Evans and R (A Child): Why A Medical Treatment Significant Harm Test Would Hinder Not Help (2019).
[90] N Lowe and S Juss, Medical treatment, pragmatism and the search for principle (1993), Modern Law Review 865-72.
[91] D Wilkinson, “In Defence of a Conditional Harm Threshold Test for Paediatric Decision-Making” in in I Goold, J Herring and C Auckland, Parental Rights, Best Interests and Significant Harms: Great Ormond Street Hospital v Gard (2019).
[92] I Goold, Evaluating “Best Interests’ as a Threshold for Judicial Intervention in Medical Decision-Making on Behalf of Children” In in I Goold, J Herring and C Auckland, Parental Rights, Best Interests and Significant Harms: Great Ormond Street Hospital v Gard (2019).
[93] K Gollop and S Pope, Charlie Gard, Alfie Evans and R (A Child): Why A Medical Treatment Significant Harm Test Would Hinder Not Help (2019).
[94] R Taylor, “Parental Decisions and Court Jurisdiction: Best Interests or Significant Harm?” in in I Goold, J Herring and C Auckland, Parental Rights, Best Interests and Significant Harms: Great Ormond Street Hospital v Gard (2019).
[95] K Gollop and S Pope, Charlie Gard, Alfie Evans and R (A Child): Why A Medical Treatment Significant Harm Test Would Hinder Not Help (2019).
[96] Great Ormond Street Hospital for Children NHS Foundation Trust v Yates [2017] EWCA Civ 410.
[97] Alder Hey Children’s NHS Foundation Trust v Evans [2018] EWHC 308 (Fam).
[98] Kings College Hospital NHS Foundation Trust v Thomas [2018] EWHC 127 (Fam).