Informed consent in children and young people

In this blog post, Megan Griffiths summarises and analyses the High Court’s recent decision in Bell v Tavistock NHS Trust. This judicial review decision looks at informed consent practices for children and young people with gender dysphoria, whether they can achieve Gillick competence for consenting to puberty blocking treatment, and what such consent processes would require in practice. This decision is likely to impact on guidance specific to gender dysphoria, but the findings on the types of information required for informed consent in young people are also likely to be relevant to other areas of clinical practice.

On 01.12.20 the High Court handed down its judgment in Bell v Tavistock and Portman NHS Foundation Trust [2020] EWHC 3274 (Admin). The three justices heard a judicial review into the defendant’s practice of prescribing puberty-suppressing drugs to children (aged under 16) and young people (aged 16 to 17) with gender dysphoria.

In its judgment, the court set out specific features of the treatment that such a patient had to understand, weigh and retain in order to be able to provide informed consent. These features went beyond the specific treatment being consented for, since it was almost always followed by another specific treatment. The court also made comments on the likelihoods of children or young people of varying ages being able to consent.

This decision is both narrow and wide. It is narrow in that it looks at the issue of competence to give consent through the very specific and difficult lens of cases of adolescents experiencing gender dysphoria. As the court put it, “the treatment goes to the heart of an individual’s identity, and is thus, quite possibly, unique as a medical treatment” [paragraph 134]. The decision is wide in two ways: firstly, since it is a judicial review, it is not confined by the facts of any individual claimant’s circumstances and it can have more general application; secondly, clinical practitioners obtain informed consent from children and young people on a regular basis, and so the general tenor of the decision can be transferable to other medical situations in which consent might be specifically sought from a young person.

Background: the Defendant, GIDS and gender dysphoria treatment

The Defendant is responsible for GIDS, the Gender Identity Development Service, which receives referrals from under 18’s all around the country who are experiencing difficulties with their gender identity. Once referred, after a typical wait time of 22 to 26 months (as of November 2019), a patient typically undergoes a number of assessments to decide which physical medical interventions (if any) are appropriate. The typical treatment route is:

1. Stage 1: administration of a puberty blocker such as GnRHa. This can be offered to children who have begun “Tanner Stage 2” of puberty (development of breasts in girls and testicular and scrotum largening in boys). The physical effects of these drugs are reversible.
2. Stage 2: administration of cross-sex hormones. These can only be prescribed from age 16 upwards. They have some irreversible effects. There was evidence that the vast majority of patients who underwent Stage 1 went on to Stage 2, even though the stages were not strictly part of the same treatment and patients could stop after Stage 1 if they wanted to. 
3. Stage 3: gender reassignment surgery. Only adults can take this step, so this would take place once a patient had left GIDS’ care. This plainly has irreversible effects.

The total number of referrals from children and young people has increased significantly over the last decade or so, jumping from 97 in 2009 to 2,519 in 2018. The majority of referrals for these puberty blockers in 2019 came from children aged 10 to 16, highlighting the need for a clear and properly enforced consenting regime in this age group.

Matters considered by the court

In Bell, the court answered two questions: (1) are children (under 16) and young people (aged 16 and 17) capable of giving informed consent to Stage 1 puberty blockers in the legal sense? (2) If so, does the Defendant’s service provide them with adequate information to be able to give informed consent?  

The court’s judgment focused on the answer to question (1) since it ultimately found that: “The problem is not the information given, but the ability of the children and young people, to understand and most importantly weigh up that information” [paragraph 150].

Informed consent from children in respect of puberty blockers

The court reminded itself that the starting point for a child’s consent is Gillick, which requires the individual child to be capable of understanding the proposed treatment. It then reminded itself of the additional requirements of informing the patient of material risks and alternatives in Montgomery. The Defendant highlighted that Montgomery concerned adult treatment, not child treatment.

The court set out a series of principles derived from the case law at paragraphs 126 to 132 of the judgment, which are worth reading. In summary, the court encouraged efforts to help a child achieve Gillick competence by providing them with information, but, ultimately, the ability to consent depended on the individual’s characteristics. The bar for a child’s understanding should not be set “too high” though: “it is not appropriate to equate the matters that a clinician needs to explain, as set out in Montgomery, to the matters that a child needs to understand to achieve Gillick competence” [paragraph 130]. This part of the judgment draws a quite distinct dividing line between the consent case law for children and the consent case law for adults. 

The information to be provided should also include matters that were objectively weighty in the child’s future even if that child did not put weight on them now: for example, the impact on their fertility.

The court went on to list eight specific pieces of information that a child or young person had to understand, retain and weigh in order to achieve Gillick competence in this particular sphere of medical treatment [paragraph 138]:

“(i) the immediate consequences of the treatment in physical and psychological terms; (ii) the fact that the vast majority of patients taking PBs go on to CSH and therefore that s/he is on a pathway to much greater medical interventions; (iii) the relationship between taking CSH and subsequent surgery, with the implications of such surgery; (iv) the fact that CSH may well lead to a loss of fertility; (v) the impact of CSH on sexual function; (vi) the impact that taking this step on this treatment pathway may have on future and life-long relationships; (vii) the unknown physical consequences of taking PBs; and (viii) the fact that the evidence base for this treatment is as yet highly uncertain.”

These eight points are very specific and go far beyond the consequences of the puberty blocking treatment alone. It is likely that they will be reflected in updated NHS guidance and policy on the consent process in this area, so it would be beneficial for practitioners to look out for any updates in due course.

It is worth pausing to note the requirement to inform the child or young person of the consequences of cross-sex hormonal and surgical treatment: such requirements account for four out of the eight specific pieces of information set out by the court. This is significant, because Bell was only strictly concerned with a child or young person’s ability to consent to puberty blockers. Whilst the Defendant contended that puberty blocking treatment was completely separate to cross-sex hormonal and surgical treatment, the Claimant considered that the data showed that the vast majority of patients who took the former went on to take the latter. The Claimant said that, as a result, the consent process for the former should include information about the latter. The court agreed with the Claimant, finding that the Defendant’s position “[did] not reflect the reality” of treatment patterns [paragraph 136].  

This appears to endorse a wide approach to informed consent in situations where statistics show that the treatment is often part of a larger chain. Whilst it was not the Claimants’ case that every child or young person receiving puberty blockers would go on to take cross-sex hormones (and then go on again to have surgery), the court recognised that the data meant that there was a likelihood in every case that this would happen, and therefore the consent process needed to look far enough into the future to account for that too. It is suggested that such a widened approach could well extend to other areas of medical treatment.

The ability of different age groups to provide informed consent

The court did not make any blanket finding as to the ability of a particular age group to consent. This was in keeping with the Gillick notion that “if the law should impose upon the process of ‘growing up’ fixed limits where nature knows only a continuous process, the price would be artificiality and a lack of realism in an area where the law must be sensitive to human development and social change” [Lord Scarman, p186B]. Instead, the court made observations as to the likelihoods of various age categories being able to meet the threshold required for informed consent. For children aged 10 to 13, “it is highly unlikely that a child … would ever be Gillick competent to give consent to being treated with PBs” [paragraph 145]. For children aged 14 and 15, “we are also very doubtful that a child of this age could understand the long-term risks and consequences of treatment in such a way as to have sufficient understanding to give consent. However, plainly the increasing maturity of the child means there is more possibility of achieving competence at the older age” [paragraph 145].

For 16 and 17 year olds, the court recognised the presumption of capacity that is conferred by s8 of the Family Law Reform Act 1969. In light of the “experimental” nature of the puberty blocker treatment though, the court urged court involvement “in any case where there may be any doubt as to whether the long-term best interests … would be served by the clinical interventions at issue” [paragraph 147].

It is worth remembering that the court’s findings largely resulted from the lack of data and evidence of consequences to treatment, such that the treatment was “properly described as experimental treatment” [paragraph 134]. Therefore, if the quality and quantity of data improves, the applicability of this judgment to puberty blocking and gender treatment may well shift.

Comment

This type of case is currently not very common, but with the increase in referrals and likely increase in treatments, it might be that, in the future, claims will arise relating to this type of medical treatment. If such cases do arise, it is likely that the processes through which the treatment comes about will be the focal point. Records of the consent process, accounts of the pre-treatment consultations and any applicable informed consent guidance are likely to be key in assessing whether informed consent had been taken. The court’s assessment in Bell of the likelihood of children of particular ages being able to consent will probably also be of relevance. Practitioners would be advised to consider that the younger the child involved, the more detailed and thorough the records and consent process should be.

This judgment also comes just two months after an independent review of gender identity services for children and young people was announced by the NHS. It would be reasonable to anticipate that such an investigation is likely to take into account the evidence to which the court was referred in Bell, the “surprising” lack of data noted by the court, and the court’s findings on the ability of children to consent.

The judgment can be found here.