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PARENTAL RIGHTS, BEST INTERESTS AND
SIGNIFICANT HARMS
Cressida Auckland and Imogen Goold
Abstract
Who should have the ultimate say over a child’s medical treatment? A series of high-profile withdrawal of care cases have highlighted the full extent of the courts’ authority to make deci- sions on behalf of children in the medical context. In both the Charlie Gard and Alfie Evans litigation, the courts have made clear that they have the power to make medical decisions for children at the point that child’s welfare is engaged. All courts involved in both cases affirmed the orthodox position that the threshold for judicial intervention in disputes about medical care of children is the welfare of the child, often referred to as the ‘best interests’ approach (referring to both the threshold and the test applied to determine what should be done). While no new point of law has been decided in these cases, they are important in that they confirm just how expansive the inherent jurisdiction of the courts in such cases is, extending as far as to prevent parents from removing their child to another jurisdiction to pursue alternative treatment. In this paper, we argue that the current threshold for intervention is too low. We argue that prima facie decision-making authority about a child’s medical care should rest with the child’s parents, affording them the ability to choose between the range of medical options available. This au- thority should yield only where the parents’ decision carries a ‘serious risk of significant harm’ to the child, at which point the court then has the authority to intervene. When it does so, the court should then apply the best interests approach.
Key words
Parental authority, parental decision-making, inherent jurisdiction, serious risk of significant harm, best interests.
I. INTRODUCTION
In recent years, a series of high-profile disputes between the parents of very ill children and their child’s medical practitioners have made their way through the courts. In such cases, all parties believe that the course of action they favour is what is best for the child, yet those parties cannot reach agreement. Some, such as Gard^1 and Evans ,^2 involve the additional complexity of different medical teams offering alternative treatment or care options, and disputes arising over whether some of those options fall within responsible medical practice. The key question raised in all of these cases was who should have the ultimate say over a child’s medical treat- ment? The courts have made it clear that they have the authority to make medical decisions on behalf of children and affirmed the orthodox position that the threshold for judicial intervention is the welfare of the child, often referred to as the ‘best interests’ approach (referring to both the threshold and the test applied). This raises deeper questions about the relationship between the state and its citizens, and the legitimate boundaries for state interference in family and private life.
In this paper, we argue that the current threshold for intervention is too low. We suggest that prima facie decision-making authority for a child’s medical care should rest with the child’s parents and not be too easily overridden. This is because many decisions about children are not solely medical decisions, but value decisions and taking respect for difference seriously means being committed to promoting a plurality of values. Where the decision about a child rests on these value-judgements, and where there is space for reasonable disagreement, there are good reasons to think that parents, due to their particular relationship to the child, should have the final say over a child’s care unless there is a sufficient reason for them to be overridden. We argue for a ‘significant harm’ threshold, with parental authority yielding to the courts only when the parents’ decision carries a serious risk of ‘significant harm’ to the child. Only once this threshold is satisfied should a ‘best interests’ evaluation be relevant as a means for the court to determine what should be done, resolving disputes between parents and medical pro- fessionals, and managing cases where parents wish to pursue a treatment that is harming, or indeed refuse treatment for their child altogether. We select this threshold because it better
(^1) The case involving Charlie Gard is officially Great Ormond Street Hospital v Yates and Gard [2017] EWHC 972 (Fam) and so we refer to it as ‘ Gard’ when referring to the decision and the litiga- tion. 2 Alder Hey Children’s NHS Foundation Trust v Mr Thomas Evans, Ms Kate James, Alfie Evans (A Child by his Guardian CAFCASS Legal) [2018] EWHC 308 (Fam).
Charlie Gard, Alfie Evans and Isaiah Haastrup^4 all involved an application by the treating hos- pital for life-sustaining treatment to be withdrawn from a seriously ill child, a request which the parents vehemently resisted. Although they shared this common feature, the facts of each were importantly different. In Gard , the parents hoped to travel to the United States, where an alternative treating team was willing to provide an extremely experimental treatment to Charlie which, if successful, could extend his life and improve his condition to some degree. In the cases of Alfie Evans and Isaiah Haastrup, there was no suggestion of experimental treatment. Rather, the parents wanted a tracheotomy to be performed on the children and for artificial ventilation to be continued, in the hope of extending life a little further. The question in those cases was instead whether prolonging the life of a heavily brain-damaged and physically disa- bled child in circumstances where they would inevitably die before long was worth the harms associated with these invasive treatments. Given the factual similarities between these two cases, it is interesting to note how differently they played out. Perhaps due to the extensive media attention received, Alfie was offered the treatment by a hospital in Rome, with the result that the parents sought only for him to be permitted to travel to Italy to receive the treatment. In Haastrup , no other hospital offered treatment for Isaiah, so the parents instead requested that the hospital provide him with the tracheotomy themselves, before allowing him to return to his home where ventilation would continue. In all three cases, the parents’ requests were denied by the courts, and the withdrawal of treatment was authorised as being in the child’s best interests.
Although referred to in the Gard case and in much of the media response to the recent cases, the high-profile case of Ashya King in 2014 involved a very different kind of disagreement. The dispute over which type of radiotherapy treatment Ashya should receive (a conventional therapy or an experimental Proton one) involved a series of misunderstandings, but the crux of the issue related to whether the NHS would fund the experimental treatment abroad (given the lack of evidence to suggest that it would be more successful than the conventional treatment offered), rather than whether or not he should be prevented from travelling abroad. The parents’ wish was therefore acceded to when alternative sources of funding were found.
(^4) Kings College Hospital NHS Foundation Trust v Ms Thomas, Mr Haastrup and Isaiah Haastrup [2018] EWHC 127 (Fam).
III. WHY SHOULD WE RETHINK THE ‘BEST INTERESTS’
APPROACH?
Disputes such as these are not new within hospitals or to the courts. Why, then, do we consider it time to rethink this settled approach? The cases of Alfie Evans, Charlie Gard, Ashya King and Isaac Haastrup have generated extensive media attention, not only in the UK, but around the world, precipitating considerable public concern and revealing a substantial disjunction between what the legal position is and what many people believe it ought to be: that parents should have the final say in decisions about their child’s care. Thousands of people worldwide mobilised in protest at Alfie’s treatment. A comment from one article on the Gard case provides a good example of how this view has been framed across social media:
No matter how skilled the doctors, this was NOT their decision to make, they should have recommended a course of action, of course, but NEVER ever should have they felt they had the right to impose their wishes over those of the parents.^5
In response, Steven Woolfe MEP announced ‘Alfie’s Law’, aimed at securing legal change to “restore the rights of parents in such decisions”;^6 while the parents of Charlie Gard have launched a similar initiative, “Charlie’s Law”, according to which the court’s should only be permitted to intervene only where the parent’s decision exposes their child to a risk of signifi- cant harm.^7
However, it is not this attention alone, nor the high-level judicial decisions that should prompt us to re-evaluate the law – the strength of opposition among some members of the community is only an indicator that the law is in need of critical re-evaluation. In fact, these cases have
(^5) “Charlie Gard’s parents refused permission to spend his last night at home before his life support machine is switched off on Friday”, The Telegraph, 27 June 2017, available at <https://www.tele- graph.co.uk/news/2017/06/29/charlie-gards-parents-refused-permission-spend-last-night-home/> ac- cessed on 20 March 2019. Chris Gard, Charlie’s father, has himself argued that ‘our parental rights have been stripped away’ by the court decisions, See M. Robinson et al., “Devastated parents of Char- lie Gard spend their last night with their baby and blast ‘heartless’ doctors for refusing to let them take him home to die before they turn off his life support later today”, The Daily Mail, 30 June 2017 <https://www.dailymail.co.uk/news/article-4653894/Outpouring-grief-worldwide-Baby-Charlie- Gard.html 6 > accessed on 20 March 2019. ITV News, “MEP Launching Campaign for ‘Alfie’s Law’ to give Parents more say”, ITV News, 26 April 2018, available at <http://www.itv.com/news/granada/2018-04-26/mep-launching-campaign- for-alfies-law-to-give-parents-more-say/ 7 > accessed on 3 August 2018. The Charlie Gard Foundation, ‘Charlie’s Law’< https://www.thecharliegardfoundation.org/charlies- law/> accessed on 4 August 2018.
The cases also demonstrated the breadth of the Court’s authority to make decisions once that threshold has been met. It is well-established that the Court can make declarations about what care a child may or may not receive, but Gard and Evans raised the question of whether the court’s powers under the inherent jurisdiction extended to issuing an injunction to prevent par- ents travelling abroad to seek alternative treatment. In Gard , McFarlane L.J. stated:
If necessary, and one hopes that the situation will not arise, such an order would be backed up by an injunction in due course; but, if so, it would be an injunction made by the court.^9
Such a situation did not, in the end, materialise in Gard. However, in Evans, whilst neither the High Court nor the Court of Appeal spoke in terms of an injunction to prevent Alfie being taken to Italy for treatment, Mr Justice Hayden was clear that he was refusing the parents’ application to “permit the child's immediate removal to Italy”,^10 a decision which was upheld by the Court of Appeal, further rejecting the argument that this breached EU free movement law. Therefore, it seems the courts considered their powers to extend to issuing an injunction, albeit they did not phrase the judgment in these terms.
It is both the low threshold for intervention and the breadth of its power once the Court is involved that sparked much of the public dissatisfaction,^11 and which, we argue, require greater justification, given the degree to which they encroach into private and family life (Article 8) and freedom of thought, conscience and religion (Article 9) under the European Convention on Human Rights.^12 If, as the court suggested in Gard and Evans , judges can decide upon any matter relating to a child’s welfare and intervene wherever it disagrees with the parents’ as- sessment of the child’s best interests, this would be an exceptionally large intrusion by the State into the private decisions of parents. As Counsel for Charlie Gard’s parents put it before the Supreme Court:
(^9) Yates & Anor v Great Ormond Street Hospital for Children NHS Foundation Trust & Anor [2017] EWCA Civ 410, [2017] W.L.R.(D.) 391 at [117]. 10 11 See^ note^2 above, [8]. We appreciate that the reporting of these cases, leaves much to be desired and the mis-reporting of key facts exacerbated the sense of outrage. However, this does not change the fact that many still re- garded the fact itself that the Court had power to intervene and to restrain the parents from removing their children as problematic. 12 Article 9 has relevance due to the religious dimensions in some cases, particularly Evans and Haastrup.
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.^13
We argue that a shift to a ‘serious risk of significant harm’ threshold strikes a more defensible balance between respecting parental authority and enabling the state to protect vulnerable chil- dren. To establish this position, we critically appraise the justifications given in the case law for the current approach and then demonstrate why they are insufficient.
IV. BEST INTERESTS THRESHOLD: ORTHODOXY AND ITS
JUSTIFICATIONS
As we have seen, the Courts in both Gard and Evans were clear that they have jurisdiction to intervene whenever a child’s welfare is engaged such that it is possible their best interests may not be met.^14 In doing, they offered some clarity about the threshold for intervention: the en- gagement of welfare represents the threshold, however welfare and a finding that a course of treatment is ‘not in the child’s best interests’ are treated as synonymous.
It is unfortunate that the Court failed to provide any normative justification for this broad ju- risdiction, nor to engage with the concerns raised, either in Gard, or in the Evans and Haastrup cases that followed. Such justification can be found in the earlier case law however, on which the Courts undoubtedly relied. Graeme Laurie traces the courts’ parens patriae doctrine, the basis of the inherent jurisdiction, to feudal times, stemming from:
the monarch as the ultimate superior, empowered with jurisdiction … over the administration of justice in those lands and, indeed, with jurisdiction over the very “person” of those who inhabited the land. In this latter respect the monarch was parens patriae -- parent of the country- -and, as such, had the right and duty to care for those not able to care for themselves.^15
(^13) In the matter of Charlie Gard (Permission to Appeal Hearing) , 8 June 2017 available at <https://www.supremecourt.uk/news/permission-to-appeal-hearing-in-the-matter-of-charlie- gard.html 14 > accessed on 20 March 2019. In the matter of Charlie Gard (Permission to Appeal Hearing) , Thursday 8 June 2017; Judgment of the UK Supreme Court in the Case of Charlie Gard 15 , 19 June 2017 at [13]. Graeme T. Laurie, ‘Parens Patriae Jurisdiction in the Medico-Legal Context: The Vagaries of Judi- cial Activism’ (1999) 3 Edinburgh L. Rev. 95, 95.
approach and stated that the Court considers itself to have the authority to intervene whenever the child’s best interests will otherwise not be promoted.^21
The courts have nonetheless made clear that parents are still afforded power to make decisions for their children in relation to medical care. As outlined by Lord Scarman in Gillick v West Norfolk and Wisbech Area Health Authority :
It is abundantly plain that the law recognises that there is a right and a duty of parents to deter- mine whether or not to seek medical advice in respect of their child, and, having received ad- vice, to give or withhold consent to medical treatment.^22
Ward L.J. emphasised in Re A , that this position is affirmed by s.3 of the Children Act 1989 , which gives:
Each of the parents… has parental responsibility over the child. That is defined, perhaps rather unsatisfactorily, in section 3 of the Act in these terms: “(1) In this Act ‘parental responsibility’ means all the rights, duties, powers, responsibilities and authority which by law a parent of a child has in relation to the child and his property”.^23
But, as Lord Scarman made clear in Gillick , ‘the common law has never treated such rights as sovereign or beyond review and control’,^24 for as Ward L.J. explained, this parental authority ‘exist[s] for the performance of their duties and responsibilities to the child’ and hence ‘must be exercised in the best interests of the child’. Therefore, ‘overriding control is vested in the court’. Indeed, facing a similar public response to that seen in the Gard case, he felt the need to explain that:
This proposition is well established and has not been the subject of any challenge in this appeal. Because of the comment in the media questioning why the court should be involved, I add this short explanation. Long, long ago the sovereign's prerogative to protect infants passed to the Lord Chancellor and through him to the judges and it forms a part of the inherent jurisdiction of the High Court. The Children Act 1989 now contains a statutory scheme for the resolution of disputes affecting the upbringing of children. If a person having a recognisable interest brings such a dispute to the court, the court must decide it.^25
(^21) Re T (A Minor) (Wardship: Medical Treatment) [1997] 1 W.L.R. 242. (^22) Gillick v West Norfolk and Wisbech Area Health Authority [1986] A.C. 112, per Lord Scarman at p.
- 23 24 Re A (Children)^ [2001] 1 Fam 147 (HL), [2001] 2 W.L.R. 480 per Ward L.J. at p. 178. 25 Gillick^ [1986] AC 112, per Lord Scarman at p. 184. Re A (Children) [2001] 1 Fam 147 (HL), [2001] 2 W.L.R. 480 per Ward L.J at p. 178.
That this position represented the current law had been thought comprehensively settled in Portsmouth Hospitals NHS Trust v Wyatt in 2005.^26 This case concerned challenges brought by the parents of a severely ill child to decisions made by medical practitioners about her future care, most pertinently the decision to put a ‘do not resuscitate’ order in place. Despite fierce debate in the media, Hedley J. was clear that it was the Court that had the final say over whether or not the order was maintained. The basis on which a determination should be made was whether or not it was in the child’s best interests, but the mere performance of parental duties ‘not in the child’s best interests’ could trigger court authority to intervene. ‘Best interests’ and ‘welfare’ are clearly treated as one and the same, and so the child’s ‘best interests’ is under- stood as both the threshold for intervention, and as the approach to be taken when determining what should be done.^27
When in Gard , Justice Francis considered he had jurisdiction to intervene therefore, he was acting in accordance with long-standing legal orthodoxy about the court’s inherent jurisdiction. In applying the best interests test and concluding that continued life support or alternative treat- ment were not in Charlie’s best interests, he was also taking a highly orthodox approach. It was consequently of little surprise when he was supported in this by the Court of Appeal and the Supreme Court, nor was it unexpected when the courts took the same approach in the later Evans case.^28
It is clear therefore that parents have authority to make medical decisions, subject to that au- thority being overridden by the courts at the point that welfare concerns are engaged. So, as Lady Hale states: ‘parents are not entitled to insist upon treatment by anyone which is not in their child's best interests.’^29 Consequently, the position can be reduced to the view that parents shall speak, but if their decision conflicts intractably with that of the doctors’, and if the matter
(^26) [2005] EWCA Civ 1181. (^27) It should be noted that such a determination is to be made against the background position that a medical professional cannot be legally compelled to offer treatment that he or she is opposed to offer- ing on clinical grounds, and doctors will rarely be required to administer treatment they do not believe is appropriate. Further, doctors mostly concur on what treatment is required, so disputes of the kind that arose in Yates rarely arise: R (Burke) v General Medical Council & Ors [2005] EWCA Civ 1003 at [31]. See also, General Medical Council, ‘Treatment and Care Towards the End of Life: Good Practice in Decision Making’ (2010) at paragraph 14(d), available at <https://www.gmc-uk.org/ethi- cal-guidance/ethical-guidance-for-doctors/treatment-and-care-towards-the-end-of-life> accessed on 20 March 2019. 28 29 See note^2 above at [47]–[50]. ‘Lady Hale’s explanation of the Supreme Court’s decision’, as delivered in Court on 8 June 2017 available at <https://www.supremecourt.uk/news/permission-to-appeal-hearing-in-the-matter-of-char- lie-gard.html> accessed on 20 March 2019.
A. Who is best able to decide what is in the child’s best inter-
ests?
What emerges from the case law, sometimes only implicitly, is that the courts regard them- selves as having this authority because they are better placed or better able to make determina- tions than parents. They regard themselves as representing the child’s interests and, in being prepared to override parents, must necessarily consider their view of the child’s interests to trump even those of parents as committed to a child’s interests as Connie Yates and Chris Gard. In this section, we explore whether this is likely to be the case. We approach this question first by considering why parents might be best placed to make decisions about their children and so should have prima facie authority for children’s welfare decisions, followed by considering why even though this authority cannot be unlimited, the ‘best interests’ threshold is not the right point at which to limit this authority.
VI. PARENTS SHOULD BE THE PRIMA FACIE DECISION-
MAKER WITH REGARD TO CHILD MEDICAL MATTERS
Despite sometimes being referred to as ‘parental rights’, parents do not have rights in the Hol- feldian claim-right sense, but rather they have authority to make decisions that derives from their responsibility for the child. This alone does not answer why they stand in this position however, and the level of responsibility and authority they hold.^30 That this authority is legally contingent on being exercised in the child’s best interests was made clear by Lord Fraser in Gillick :
parental rights to control a child do not exist for the benefit of the parent. They exist for the benefit of the child and they are justified only in so far as they enable the parent to perform his duties towards the child, and towards other children in the family.^31
Many parental decisions have an impact on their children, sometimes lasting and with poten- tially serious implications for their upbringing. These choices — which include medical deci- sions — are left to parents so as to avoid making substantial invasions into familial privacy by
(^30) This language avoids the problem of distinguishing parental rights from other rights that differ in not-being self-regarding. We are grateful to Tristan Cummings for suggesting this point to us. 31 Gillick v West Norfolk and Wisbech Area Health Authority [1986] A.C. 112, per Lord Fraser at p.
monitoring these decisions and intervening regularly to police them. Such an approach would offend our general commitment to privacy and family life in liberal democratic society and practically, would require vast resources to administer, implement and police. As Joseph Gold- stein writes, the law:
… as parens patriae the state is too crude an instrument to become an adequate substitute for parents. The legal system has neither the resources nor the sensitivity to respond to a growing child's ever-changing needs and demands. It does not have the capacity to deal on an individual basis with the consequences of its decisions or to act with the deliberate speed required by a child's sense of time and essential to his well-being.^32
Further, many everyday decisions made on behalf of children do not require special skills: most adults can make these decisions relatively well and there is no reason to think that anyone else would likely do better. This does not mean that there are not better or worse decisions, but that most are not so complex or difficult that they cannot reasonably be taken by competent parents or guardians. Many of these decisions also do not, individually, have very large impacts on the child. Therefore, if some less optimal choices are made, this is not a serious cause for concern. This all also allows space for the reality that parents have different resources, must balance other considerations and also take account the needs of other children (and any other persons for whom they may have responsibility).
In relation to medical treatment however, the courts do have the resources to supervise, and the consequences for the child of having or not having treatment may well be grave. Nonetheless, even here, parents ought to retain a degree of authority. One reason is that the parents will often know their child best, and so will be best placed to know their preferences. Douglas Diekema rightly points out that most parents care about their children, and hence:
they will usually be better situated than others to understand the unique needs of their children, desire what’s best for their children, and make decisions that are beneficial to their children.^33
This, he comments, is a good reason to presumptively respect parental autonomy and family privacy.^34 Rob Heywood makes a similar point, noting that because parents tend to know their children best, ‘it is
(^32) J. Goldstein, “Medical Care for the Child at Risk on State Supervision of Parental Autonomy” Yale Law Journal (1977) 86(4), 645, 650. 33 D. Diekema, “Parental Refusals of Medical Treatment: The Harm Principle as Threshold for State Intervention” 34 (2004) 25(4) Philosophy of Medical Research and Practice 243, 244. ibid. , 244.
This commitment to liberal values is especially important where there is not a verifiably ‘right’ or ‘wrong’ answer about what is best for the child. Goldstein contends that:
It is precisely in those cases in which reasonable and responsible persons can and do disagree about whether the ‘life’ after treatment would be “worth living” or “normal”, and thus about what is "right," that parents must remain free of coercive state intervention in deciding whether to consent to or reject the medical program proffered for their child.^42
His point is that if there can be reasonable disagreement, then the parental view cannot be ‘wrong’ (nor any other answer ‘right’) because there is no one objectively right answer. It is in such circumstances that ‘the law’s guarantee of freedom of belief becomes meaningful and the right to act on that belief as an autonomous parent becomes operative within the privacy of one's family’.^43 In such cases, the law should protect this freedom by leaving these decisions to parents.
The Gard case is an apt factual situation to explore this point because the key issue was whether the potential harm from undergoing nucleoside therapy was worth the improvements Charlie might possi- bly gain from it. It was a decision about which chances are worth taking and at what cost, about which there cannot be a ‘right’ or ‘wrong’ answer. Emily Harrop offers a similar example in the case of spinal muscular atrophy type 1, in which a treatment that might slow the course of the disease is available, but delivery of the treatment is unpleasant and the future benefits are uncertain. She explains that
The decision is a very personal one; for example, when two families who had made opposite decisions happened to visit our hospice at the same time, neither regretted their choice, when faced with the other.^44
There is no clear answer to questions such as quality of life versus longevity. Such a decision is really a harm/benefit analysis, in which life extension and possible improvement must be weighed against immediate harms, chance of success and potentially worse outcomes. Beyond clearly harmful situations that threaten the child’s life, a great many such decisions about what is best for a child are questions of values (and to a degree, relate to subjective preferences if the child is old enough to have formed these): to know what is in the child’s best interests in the face of competing courses of action, we need to know which values we think it is best to pursue. Given this, then absent other considerations, parents are at least as well placed as others to make these determinations. Leaving such decisions to parents supports their authority and promotes respect for difference. To do otherwise, in the absence of a strong countervailing
(^42) See note 32 above, 654. (^43) Ibid , 655. (^44) E. Harrop, ‘Setting the Scene: Supporting and Informing Shared Decision-Making at the Bedside’ In I. Goold, J. Herring and C. Auckland (eds.), Parental Rights, Best Interests and Significant Harms. Medical Decision-Making on Behalf of Children Post-Great Ormond Street Hospital v Gard , ( forthcoming). See also E. Salter, ‘Deciding for a Child. a Comprehensive Analysis of the Best Interest Standard’ (2012) 33(3) Theoretical Medicine and Bioethics 179, 191 and the case of Aaron in her dis- cussion.
consideration, effectively gives primacy of one view on value over another. Such a determina- tion both lacks justification and fails to protect tolerance of difference.
The parent’s insight may be of particular value when there is a need to balance medical con- siderations against other interests, which is reflected in the current law. Diekema offers the illuminating example of chemotherapy:
Although medical considerations are important, a child’s interests will also be affected by emo- tional and physical accompaniments of the chosen course. Best interests all too frequently may be reduced to objective medical interests alone. In discussing chemotherapy for a child with leukaemia, for example, medical professionals frequently focus on the fact that therapy will increase the child’s chance of survival while underestimating the negative aspects of cancer treatment. Some parents may place greater weight on the risks, side effects, discomforts, and disruptions that the child may endure in being treated, perhaps making the judgment that the increased chance of survival does not justify those burdens. Determining how these multiple factors ought to be weighed is no simple matter.^45
The welfare of the child is a matter in which emotional, religious, cultural and family consid- erations are all intimately connected. Parents are therefore uniquely positioned to assess the child’s medical interests in light of these other important considerations.
These latter points have extra importance where the child was old enough to have expressed preferences before losing capacity. In such cases, parents may also be best placed to reflect the child’s perspective, as they have insights that other parties lack. Essentially, they have empiri- cal information that is highly relevant to the question of what is best for the child. Where this is not the case, then even their knowledge of the family’s value, the wider context in which the child will be raised and so on, suggest that respecting parental authority is likely to produce a decision that will best promote the child’s interests.
For all of these reasons, then, there is a substantial case in support of the law according parents a wide margin of discretion in order to make medical treatments on behalf of their children.^46
(^45) See note 33 above, 248. (^46) We note that our analysis rests largely on a presumption that parents are engaged, loving and want the best for their children. We appreciate that this is not always the case, but consider it sufficiently usual that parents have their child’s best interests at heart to ground this position. In case where par- ents are not so engaged, some problematic choices may be caught by a harm threshold, while educa- tional provision and child social services may redress some other concerns. We also note the judicial acceptance that some variation in parenting is the price of tolerance (see comments of Hedley J in Re L : “Society must be willing to tolerate very diverse standards of parenting, including the eccentric, the barely adequate and the inconsistent”: Re L (Care: Threshold Criteria) (2007) 1 F.L.R. 2050).
tell them. In the case of Isaiah Haastrup for example, the parents simply would not accept the medical facts about his prognosis put forward both by the treating team, and the independent experts they themselves had appointed. Mr Justice Macdonald wrote:
The mother makes clear in her statement that, contrary to the medical evidence, the parents do not accept that it is not possible to wean Isaiah off his ventilator. Whilst accepting that a number of attempts have been made and that these were not successful, the mother and the father believe that the medication that Isaiah is being given is having an effect on his ability to breath on his own and that, were it not for this, he would recover his ability to breath on his own. They are each unable to accept the medical evidence that the level of damage to the respiratory centres of Isaiah’s brain is of such magnitude that this will not be the outcome for Isaiah.^51
Similar concerns were raised in respect of his level of consciousness (the mother believed that “the sole driver of changes in Isaiah’s alertness is the level of his medication”^52 ); his visual and aural functioning (which were reputedly not carried out at the ‘optimal’ time),^53 and his re- sponsiveness. There was fundamental disagreement between the parties over the fact of his current level of functioning.
In disputes of this kind, we argue that there is only a need for intervention where the factual dispute (or error) will harm this child. Parents make errors of fact about many things, but most make little difference to a child’s life and are insufficient to justify the privacy infringements of overriding those decisions. But a factual error that causes harm to a child cannot be acceptable. There is nothing about a factual error that lends justification to harming a child, and the justifi- cations for parental authority do not offer any basis for respecting their decision in such cases. A parent cannot claim a right ‘to be wrong’ in such cases. A relatively low bar for intervention might then be justified in such cases, but some form of pre-court mediation and measures to help address the errors of fact made by either party would be welcome.
In other cases, parents’ decisions may be open to challenge because the parents may be unable to make a decision in their child’s best interests because they are too biased to do so, either because their decision is clouded by their beliefs or because of their interest in their relationship with the child. Sometimes, this will mean their authority should be fettered and intervention would be justified to bring objectivity to the decision-making process given that it affects a vulnerable third party in the person of the child. Somewhat paradoxically, the depth of a par- ent’s relationship with her child is raised as both the reason she is likely to know her child’s
(^51) See note 4 above at [58]. (^52) ibid at [59]. (^53) ibid at [60].
needs and interests best, and the reason why she is too closely connected to the child’s situation to decide objectively. Putting pressure on the claim that parents do in fact know the child best, Salter notes that the parent-child relation is emotionally complex and:
may not be conducive to full and frank disclosure of the child’s preferences to parents. This complexity is often aggravated in times of illness and crisis, sometimes causing children to feel guilty, helpless, abandoned, or embarrassed. Indeed, oftentimes, children are able to be more straightforward with someone with whom they have a different kind of relationship.^54
A parent may not then possess more information than others about a child’s preferences, or the information shared with them by the child may actually be misleading. Similarly, Salter ex- plains, this emotional complexity may mean the other claims made for parental authority – that parents best understand how their child thinks, and can work out what he or she would want – is flawed for the same reasons.^55 Such arguments also lack weight in cases of very young chil- dren and infants.
Bias and emotionality on the part of a parent is not alone enough for their decision to be over- ridden but it is a basis on which we can say that sometimes we might question their authority in relation to a particular decision. This might be in cases where emotion blinds the parents to be able to accept factual information, or to take on board the evaluations of the treating team. In such instances, it could be said that emotionality may be undermining the parents’ capacity to make rational decisions, and so provide a basis on which to believe that other parties might be better able to weigh the relevant information. But merely the fact that parents are emotion- ally involved in their children’s lives is not itself a sufficient reason to assume that the court or the medical professionals know what is best.
In some situations, meanwhile, parents may have an inherent conflict of interest, such as where they must choose between the interests of two children – one needs a kidney, the other is a potential donor. Robert Bennett notes that, ‘a judge may be asked to intercede because the parent’s conflict of interest makes him an inappropriate decision-maker’.^56 State intervention
(^54) See note 37 above, 181. (^55) ibid , 181. (^56) R. Bennett, “Allocation of Child Medical Care Decision Making Authority A Suggested Interest Analysis” (1997) 62(2) Virginia Law Review 186, 313.
