Parental responsibility and puberty blockers

In AB v CD & Ors [2021] EWHC 741 (Fam), Lieven J has considered further the fall-out from the Bell judgment concerning the administration of puberty blockers.  The decision of the Divisional Court in Bell is under appeal, listed before the Court of Appeal in June 2021.  In AB v CD, Lieven J was asked by AB for a declaration that she and CD (the father of XY) have the ability in law to consent on behalf of XY to the administration of hormone treatment to suppress puberty, known as puberty blockers (“PBs”).  As Lieven J noted at paragraph 6:

The legal issues in this case are different from Bell because, as was said at [47] in Bell, the question of whether parents could consent to the treatment was not considered in the judgment. On the basis of the submissions in Bell from [the Tavistock and Portman  NHS Foundation Trust (‘Tavistock’) and University College Hospital NHS Trust (‘UCLH’)], it appeared that the administration of PBs would not continue on the basis of parental consent alone. It was not suggested to the Divisional Court that GPs could, and in some cases would, proceed with the administration solely on the basis of parental consent.

However, subsequent to the decision in Bell, the Tavistock and UCLH took the position that, for those patients currently receiving treatment with PBs, as opposed to new patients, given that a stay has been granted in respect of paragraph 138 of Bell (i.e. the Divisional Court’s conclusion as to the relevant information that a child would need to understand to have Gillick competence to consent to their administration, “and the extreme distress these children and young persons would suffer if the treatment was not continued, treatment should continue on the basis of parental consent alone as long as the patient continues to want the treatment” (paragraph 7).

It is important to understand that Lieven J (and the parties) proceeded on the basis not only that she was bound by Bell but also, as a member of the Divisional Court in that case, she entirely agreed with it.

Background

XY, born a boy, and aged 15 at the time of the judgment, had been referred to the Gender Identity Development Service (“GIDS”), run by the Tavistock in 2016.  XY was referred by GIDS to UCLH and first attended in February 2018. Her treatment was delayed on two occasions because puberty had not commenced. She was seen by Professor Butler in April 2019 when she was 13. Professor Butler noted: [XY] has been declared competent to consent and has signed consent forms voluntarily.” Her parents had also signed the relevant form.  Professor Butler had proceeded at that point on the basis that XY could give legal consent.  XY had four appointments at UCLH and Professor Butler requested XY’s GP to prescribe and administer PBs. XY started on PBs in July 2019. She was initially on a drug that is given every 4 weeks but then now moved to a 10 week cycle. Her next prescription was due in April 2021.   All parties before the court agreed that ceasing to take the PBs would have significant physical consequences for XY as her male puberty would recommence. She would quickly develop male secondary characteristics, such as facial hair and her voice breaking, which would to a degree at least, be irreversible. As Lieven J noted, “[i]t is very clear from XY’s witness statement and letter, and her parents’ evidence, that she would find this deeply distressing” (paragraph 31).

In the light of the Bell judgment, UCLH wrote to XY’s GP setting out its understanding of the legal position. XY’s GP was sent a copy of this letter on 17 December 2020. The letter stated inter alia: “We have let patients know that they will continue to receive their medication until the outcome of this application to the Court is known [an individual best interest application]. This has been agreed with NHS England and we are seeking a further stay on the judgement to cover this specific cohort of patients for this specific purpose. It is expected that GPs will continue to prescribe to this cohort. If you have any questions about this, please contact us directly.”

GPs are not governed by NHSE and no equivalent service specification was issued to them. Therefore, GPs were entitled to prescribe medications without following the procedures set out by NHSE. XY’s GP continued to prescribe PBs although it was not clear how long she would continue to do so.  Other GPs had not agreed to continue prescribing PBs; before Bell, UCLH would have done the prescriptions themselves if the GP declined. However, it was not clear whether that would continue to happen post Bell. In any event, as Lieven J noted, “it is not wholly clear whose consent is being relied upon to make the administration of PBs lawful post Bell” (paragraph 28).   As Lieven J noted:

It is by reason of the uncertainty on the lawfulness of parental consent, and the concern that XY’s GP might decline to agree to further prescribe, that AB decided to make this application. [UCLH] takes the view that clarity is needed on this issue for the medical practitioners concerned.

The application was issued in January 2021, coming initially before Sir James Munby, who invited Cafcass to appear as Advocate to the Court and identified the following issues, which Lieven J agreed were the issues she had to determine:

1. Do the parents retain the legal ability to consent to the treatment?

2. Does the administration of PBs fall into a “special category” of medical treatment by which either:

a, An application  must  be  made  to  the  Court  before  they  can  be prescribed?

b. As a matter of good practice an application should be made to the Court?

Do the parents retain the legal ability to consent to treatment?

As Lieven J noted, both the Tavistock and UCLH had proceeded before Bell on the basis that XY was Gillick competent in respect to the decision to take PBs and therefore it was not necessary to ask whether the parents could also consent. However, that view was cast into doubt by the judgment in Bell and in particular paragraph 138 of the judgment.  No fresh assessment of XY’s competence had been made since the judgment although, as Lieven J noted, “XY herself unsurprisingly thinks she is competent to make the decision” (paragraph 49).   As it could not be could not be established with certainty whether XY was, or was not, Gillick competent, Lieven J proceeded on two alternative bases (paragraph 51):

  • either that she was not Gillick competent; or
  • she was Gillick competent, but it remained relevant whether her parents could also give operative consent to the treatment.

As Lieven J noted, the debate before the court turned on two decisions of Lord Donaldson MR: Re R (A Minor) (Wardship Consent to Treatment) [1992] Fam 11 and Re W (A Minor) Medical Treatment Courts Jurisdiction) [1993] Fam 64. In those cases Lord Donaldson cast doubt upon precisely what Lord Scarman had meant in Gillick v West Norfolk and Wisbech Health Authority [1986] AC 112, and the degree to which parental right to consent to treatment continued even when the child was Gillick competent.

After a detailed examination of precisely what it was that House of Lords had decided in Gillick, Lieven J noted that:

67. Although there is some difference in nuance between the speeches in Gillick, it is accepted that Lord Scarman reflects the view of the Committee. The very essence of Gillick is, in my view, that a parent’s right to consent or “determine” treatment cannot trump or overbear the decision of the child. Therefore, the doctors could lawfully advise and treat the child without her mother’s knowledge or consent. In Gillick, the parent did not have the right to know that the treatment was being given, so it makes little sense to assume that the parent could act to stop the child’s decision being operative on whether the treatment takes place or not. I cannot accept that Lord Scarman was drawing the distinction between the child making the decision and the parent being able to give legally operative consent that Lord Donaldson seems to have drawn in Re R. Mrs Gillick was asserting a right to “decide” whether her daughters could be given advice and treatment without her knowledge, and thus without her consent. Therefore, the distinction that Lord Donaldson seeks to draw between the parent retaining a right to consent, but not being in a position to determine the treatment, does not accord with the issue in Gillick.

Unlike the position considered in Gillick, XY’s parents and XY were in agreement:

68. [….] Therefore, the issue here is whether the parents’ ability to consent disappears once the child achieves Gillick competence in respect of the specific decision even where both the parents and child agree. In my view it does not. The parents retain parental responsibility in law and the rights and duties that go with that. One of those duties is to make a decision as to consent in medical treatment cases where the child cannot do so. The parent cannot use that right to “trump” the child’s decision, so much follows from Gillick, but if the child fails to make a decision then the parent’s ability to do so continues. At the heart of the issue is that the parents’ “right” to consent is always for the purpose of ensuring the child’s best interests. If the child does not, for whatever reason, make the relevant decision then the parents continue to have the responsibility (and thus the right) to give valid consent.

Lieven J noted that this could arise “if the child is unable to make the decision, for example is unconscious. However, it could also arise if the child declines to make the decision, perhaps because although Gillick competent she finds the whole situation too overwhelming and would rather her parents make the decision on her behalf.” (paragraph 69).

In XY’s case:

in the light of the decision in Bell, and the particular issues around Gillick competence explained in that judgment, it has not been possible to ascertain whether the child is competent. In this case, there are two options. If the child is Gillick competent, she has not objected to her parent giving consent on her behalf. As such, a doctor can rely on the consent given by her parents. Alternatively, the child is not Gillick competent. In that case, her parents can consent on her behalf. It is not necessary for me or a doctor to investigate which route applies to give the parents authority to give consent. Therefore, in my view, whether or not XY is Gillick competent to make the decision about PBs, her parents retain the parental right to consent to that treatment.

Is there a special category of medical treatment requiring court authorisation, and do puberty blockers fall within it?

Lieven J identified that there were two preliminary points to consider in respect of this issue:

  1. Judgments concerning medical treatment decisions that should be brought to court are sometimes less than clear as to whether they are referring to a legal requirement or merely to good However, as Lieven J noted at paragraph 72, “it is in most cases probably a distinction without much difference. If it is good practice to apply to the Court, then if a clinician does not do so s/he is at risk of considerable criticism and possibly disciplinary action by the professional body. Therefore, a principle of good practice may have a very similar effect to a legal requirement;”
  2. At paragraph 73, Lieven J noted that she was “acutely” conscious that all the parties were arguing the same position, namely that, even if there was some limited “special category”, it was very limited and PBs did not fall within: “However, it is very apparent from Bell that there could be a strong counter argument. Ms Butler-Cole [for the Advocate to the Court] took me to the relevant legal material, but it was not her role to put that counter argument.”

As Lieven J identified at paragraph 74, ‘”[t]he argument that there is a special category of medical treatment, which only the court can authorise, rests on a series of decisions concerning sterilisation of girls and women, some of which involve under 16 year olds.”  After a detailed examination of that case-law, the case-law relating to adults lacking capacity to make the relevant decisions, the Australian cases in which these issues had been considered, the regulatory framework (and a decision that she did not need to consider the complex questions of discrimination and the Equality Act 2010 which did not, in fact, determination), Lieven J identified that:

117. The analysis of the caselaw shows that the cases supporting a special category of treatment of children which require Court approval are very limited. In fact, the only case where the Court has found a legal requirement to come to Court in respect of treatment of a child, where both parents consent, is Heilbron J in Re D, the case of a “non-therapeutic” sterilisation of an 11 year old. In all other contexts, including where the parental decision will lead to the child’s life ending, the Court has imposed no such requirement. There are a range of cases where there does have to be Court approval, but this is where there is a clinical disagreement; possible alternative treatment of the medical condition in issue; or the decision is, in the opinion of clinicians, finely balanced. These are fact specific instances rather than examples of any special category of treatment where the Court’s role is required simply because of the nature of the treatment.

Lieven J observed that:

119. It might be argued that in the light of the Divisional Court’s analysis in Bell, PBs are sufficiently different from other forms of treatment to be treated differently. I accept that I am somewhat hampered by the fact that no party was putting this argument. The factors from Bell which would be relied upon in this regard would, I assume, be the poor evidence base for PBs; the lack of full and long term testing; the fact their use is highly controversial, including within the medical community; and the lifelong and life-changing consequences of the treatment, which in some ways are irreversible. The ratio of Bell is that a child is very unlikely to be in a position to understand and weigh up these factors.

120. However, the key difference from Bell is that parents are, in general, in a position to understand and weigh up these matters and consider what is in the long and short term best interests of their child. They are adults with full capacity and as the people who know their child best, and care for them the most, will be in a position to reach a fully informed decision. The evidence strongly suggests that XY’s parents have fully considered these matters and come to a careful and informed decision In my view, the factors identified in Bell, which I fully agree with, do not justify removing the parental right to consent. The gravity of the decision to consent to PBs is very great, but it is no more enormous than consenting to a child being allowed to die. Equally, the essentially experimental nature of PBs should give any parent pause for thought, but parents can and do routinely consent on their child’s  behalf  to  experimental  treatment,  sometimes  with  considerable, including life-changing, potential side-effects. It is apparent from Bell that PBs raise unique ethical issues. However, adopting Lady Black in NHS v Y, I am wary of the Court becoming too involved in highly complex moral and ethical issues on a generalised, rather than case specific, basis.

Lieven J identified that she had two points of particular concern about parents giving consent for children with Gender Dysphoria, in a context where:

122. […] The use of PBs for children with Gender Dysphoria raises unique and highly controversial ethical issues. The division of clinical and ethical views has become highly polarised. I have read the evidence of Professor Graham who refers to the studies supporting their use, but those studies themselves come from a very small group of institutions and it is not possible for me to assess the degree to which they have been peer reviewed or attract a consensus of support amongst the clinical and academic community. These are precisely the type of matters which are best assessed in a regulatory and academic setting and not through litigation.

The two concerns were that:

1. Within the structure of the Tavistock and UCLH, “it may be that clinical difference and disagreement will not necessarily be fully The taking of strong, and perhaps fixed, positions as to the appropriateness of the use of PBs may make it difficult for a parent to be given a truly independent second opinion.” However, Lieven J considered that this was a “matter for the various regulatory bodies, NHS England and the Care Quality Commission, to address when imposing standards and good practice on [them].”   Lieven J observed that it might well be that additional safeguards should be built in such as a requirement for an independent second opinion, which would be “likely to be a better safeguard for the very vulnerable children concerned rather than removing the ability in law of the parents giving consent;”

2. The pressure that may be placed by the children in issue upon their parents. Lieven J was clear that this was not in issue in XY’s case, and that the Tavistock and UCLH were alive to the possibility in other cases, continuing (at paragraph 127):

If the clinicians, or indeed any one of them, is concerned that the parents are being pressured to give consent, then I have no doubt such a case should be brought to Court.

128. Equally, if the clinicians consider the case to be finely balanced, or there is disagreement between the clinicians, then the case should be brought to Court. However, I do not consider that these issues justify a general rule that PBs should be placed in a special category by which parents are unable in law to give consent.

Comment

Depending upon the outcome of the Court of Appeal’s decision in Bell, the judgment in this case is either one that is going to have a very long “shelf-life” in relation to the particular issue of PBs, or one that is very limited.  It could be limited because:

  • the Court of the Appeal reaches a different conclusion about the components of competence to consent to PBs; or
  • as it is now clear that parental consent is being considered relevant in a way that it was not before the Divisional Court, the Court of Appeal then takes on the position in relation to parental responsibility as well.

It should be noted that the decision in this case relates solely to the situation of a child under 16, as was XY.  It says nothing about the right (or otherwise) of a person with parental responsibility to consent to treatment in relation to a young person aged 16 or 17.  Its logic, though, suggests that it could equally apply in a situation in which the young person had capacity but was unable to make the decision.   In relation to PBs, it appears unlikely that there would ever need to be consideration of whether parental responsibility would be relevant in the context of a young person who lacked capacity applying the MCA 2005, as it appears that such a young person would not be put forward for consideration of PBs.  It should be remembered that in relation to other categories of treatment, however, that there is a curious parallel world which exists between 16 and 18 for decision-making in the case of incapacity, where clinicians can look either to obtaining consent from a person with parental responsibility or to proceeding on the basis of the provisions of the MCA.

The discussion by Lieven J of the difference between legal obligations and good practice is of wider importance, although the characterisation of it being a distinction without a difference in many cases is characteristically both crisp and to the point.

Finally, it should be noted yet more (obiter) nails have been hammered into the coffin of the parents’ right to override a competent refusal of treatment by a child by Lieven J’s observation at paragraph 60 that “[t]o the degree that Lord Donaldson was seeking to find that a parent retains the right to consent to treatment which a Gillick competent child has refused, in my view that analysis does not fit with what the House of Lords, and in particular Lord Scarman, said in Gillick. It would now also be very difficult to accept in the light of article 8 of the ECHR.”   A court will have the right to override that refusal (and will do so past 16, when questions of competence are replaced by those of mental capacity): see NHS Trust v X (No 2) [2021] EWHC 65 (in which permission was refused by Peter Jackson LJ), but it now appears – rightly – unthinkable that a doctor could proceed in the face of the refusal of a competent/capacitous child/young person solely on the basis of parental consent.

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One Reply to “Parental responsibility and puberty blockers”

  1. Thank you Alex for this analysis. I will be watching the outcome of the Bell appeal with great interest. I am commenting in part because I haven’t found another way to subscribe to future posts – looking forward to reading more!

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