The following is a guest post by Clare Feikert-Ahalt, a senior foreign law specialist at the Law Library of Congress covering the United Kingdom and several other jurisdictions. Clare has written numerous posts for In Custodia Legis, including Weird Laws, or Urban Legends?; FALQs: Brexit Referendum; and The UK’s Legal Response to the London Bombings of 7/7.
In early December 2020, rising cases of COVID, new lockdowns, and BREXIT trade talks that went down to the wire were briefly displaced from the headlines after the High Court of England and Wales published a judgment in the case of Bell v Tavistock and Portman NHS Foundation Trust. This case involved an application for judicial review into the practice of the Gender Identity Development Service (GIDS), provided through the Tavistock and Portman NHS Trust. GIDS prescribed gonadotropin-releasing hormone agonists (GnRHa, hereinafter puberty blocking drugs) to suppress puberty in patients referred to GIDS aged between 10-18 years old who were experiencing gender dysphoria. Gender dysphoria is described by the National Health Service (NHS) as “a sense of unease that a person may have because of a mismatch between their biological sex and their gender identity.”
The High Court ruled that patients under the age of 16 years old were unlikely to be able to understand, retain and give weight to several criteria required for them to provide informed consent to receive puberty-blocking drugs. The result of the ruling, if it is upheld on appeal, means that it will be difficult for patients under the age of 16 to demonstrate they understand the long-term effects of puberty blockers and give their informed consent, and that a court order will be needed for these patients to proceed with this type of treatment.
The judicial review was brought by two claimants. The first, assigned female at birth, was initially prescribed drugs to block puberty at age 15 and then received cross-sex hormones to promote the development of male characteristics and later underwent a double mastectomy before regretting undergoing treatment and facing difficulties transitioning back. The second claimant is the mother of a 15-year-old who was concerned that her child would be referred to GIDS and be prescribed puberty blocking drugs. Both claimants argued that it was unlawful to prescribe puberty-blocking drugs to patients under the age of 18 years as they lacked competence to give valid consent to the treatment and that the information provided by GIDS regarding the treatment was misleading and insufficient to enable informed consent to be given. The case thus involved considering the legal issues of the policy and practice of GIDS in prescribing puberty blockers and cross-sex hormones, notably whether patients under the age of 18 can lawfully give consent to medical treatment, rather than the treatments themselves.
GIDS Procedure for the use of Puberty Blockers
GIDS accepts referrals from clinicians across England and Wales and, at the time the case was heard, due to significant increases in the number of cases referred, had a lengthy wait time of approximately 22-26 months for the first appointment from the date of the referral. Once the first appointment is made, GIDS stated a further three to six sessions are scheduled over a six-month period, with more sessions being typical for younger people. (Bell v Tavistock and Portman NHS Foundation Trust, ¶ 17.)
Puberty blockers were prescribed to GIDS patients under 16 to help provide the patient with “time to think” before proceeding with cross-sex hormone treatment. Due to the nature of treatment with puberty blockers, GIDS has stated that parental consent alone is insufficient and that puberty blockers are not administered without the patient’s consent. In order for the patient’s consent to be valid, the patient must be determined by the clinicians at GIDS to be competent in accordance with the principles set out in the Gillick case, known as Gillick competence. (Bell v Tavistock and Portman NHS Foundation Trust, ¶ 47.)
Gillick competence provides that a child who has achieved a sufficient degree of understanding and intelligence regarding any treatment they are about to undergo may be considered competent and capable of providing valid consent to this treatment. The level of competence varies according to the seriousness of treatment and “reflects the staged development of a normal child and the progressive transition of the adolescent from childhood to adulthood.” When a child reaches the age of 16, provided they are mentally competent, there is a statutory presumption contained in section 8 of the Family Law Reform Act 1969 that they are considered to be sui juris and capable of consenting to treatment themselves.
GIDS considered that using Gillick competence was appropriate and that any court intervention into treatment “would be an intrusion into the child or young person’s autonomy.” It also expressed concern about the resources of both the NHS and the courts if such an approach were adopted. (Bell v Tavistock and Portman NHS Foundation Trust, ¶ 149.)
Prior to prescribing puberty-blocking drugs, GIDS provided patients and their parents with information and discussed the implications of taking puberty blockers in order to enable the patient to provide informed consent to the treatment. The clinicians provide the patient seeking treatment and their parents a variety of information, including a section on informed consent that includes the statement that “[t]he consequences of treatment decisions can be significant and life-changing,” and that:
All efforts will be made to ensure that clients are aware of the longer term consequences of the endocrine treatments, including implications for fertility, and the decision of the competence of the client will be jointly made by the endocrine and psychological members of the Service’s integrated team. The current context of treatment decisions about cross sex hormones in adolescence is that there is limited scientific evidence for the long-term benefits versus the potential harms of the intervention. There are also concerns that it is uncertain whether or not a young person will continue to identify as transgender in the future, given that some subsequently identify in a different way.
While providing age appropriate information about puberty blockers to patients, GIDS did not require the patient, at the time of being prescribed puberty blockers, to show understanding over the implications of taking cross-sex hormones, which was the typical course of treatment that followed after puberty blockers were prescribed and taken. GIDS thus treated the consent to prescribe puberty blockers as separate from the consent required for the referral to GIDS, but separate from the prescription of cross-sex hormones. (Id. ¶¶ 56-58.)
When the court asked GIDS for statistics on patients under the age of 16 who it had determined were suitable to be prescribed puberty blockers but were not due to the patient not being Gillick competent to make the decision, GIDS did not have any information, noting that most patients referred were prescribed with puberty blocking drugs. (Id. ¶ 44.) The court determined that the approach GIDS had adopted was to provide the patient with more information and discussions until the patient was considered to be Gillick competent or was discharged from GIDS.
In considering the issues presented, the court stated that, other than life saving treatment, “there will be no more profound medical decisions for children than whether to start on this treatment pathway”. (Id. ¶ 149.) It noted that GIDS required the patient to show Gillick competence over puberty blockers, which is considered to be stage 1 of the treatment, but it did not require the patient to be Gillick competent over stage 2 of the treatment, which is inherently intertwined with stage 1 and involves taking cross-sex hormones. Taking cross-sex hormones causes “irreversible changes to the child’s body with lifelong medical, psychological and emotional implications for the child.” (Id. ¶ 93.) GIDS considered both stages to be “entirely separate” as the patient could stop taking puberty blockers in stage 1 at any time and the process is fully reversible at this point. (Id. ¶ 136.)
The Court ruled that having Gillick competence for puberty blockers alone “does not reflect the reality,” as the evidence presented shows that the majority of children prescribed puberty blockers continued on to stage 2 and were subsequently prescribed cross-sex hormones, thus “Stages 1 and 2 are two stages of one clinical pathway and once on that pathway it is extremely rare for a child to get off it.” (Id. ¶ 136.)
The Court further rejected the approach taken by GIDS that puberty blockers provided the patient with “time to think,” noting that while the drugs prevent the patient from going through puberty:
the use of puberty blockers is not itself a neutral process by which time stands still for the child on [puberty blockers], whether physically or psychologically. Puberty blockers prevent the child going through puberty in the normal biological process. As a minimum it seems to us that this means that the child is not undergoing the physical and consequential psychological changes which would contribute to the understanding of a persons identity. There is an argument that for some children at least, this may confirm the child’s chosen gender identity at the time they begin the use of puberty blockers and to that extent, confirm their [gender dysphoria] and increase the likelihood of some children moving on to cross-sex hormones. Indeed, the statistical correlation between the use of puberty blockers and cross-sex hormones supports the case that it is appropriate to view [puberty blocker]s as a stepping stone to cross-sex hormones. (Id. ¶ 137.)
As a result of the evidence considered, the Court determined that, in order for a child to be Gillick competent, they need to understand not just the implications of taking puberty blockers, but also those of taking cross-sex hormones. (Id. ¶ 138.) The Court ruled that it did not believe that the answer to this case is simply to give the child more, and more detailed, information. The issue in the Court’s view is that, in many cases, however much information the child is given as to long-term consequences, s/he will not be able to weigh up the implications of the treatment to a sufficient degree. There is no age appropriate way to explain to many of these children what losing their fertility or full sexual function may mean to them in later years. (Id. ¶ 144.)
The Court held that, in order to give valid consent to medical treatment, the child must not only understand, but be able to retain and weigh the following criteria:
- (i) the immediate consequences of the treatment in physical and psychological terms;
- (ii) the fact that the vast majority of patients taking PBs [puberty-blocking drugs] go on to CSH [cross-sex hormones] 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
- (vii) the fact that the evidence base for this treatment is as yet highly uncertain. (Id. ¶ 138.)
The Court did not consider that providing information and discussing it was sufficient to achieve Gillick competency. (Id. ¶ 150.) It ruled it would be difficult for children under the age of 16 to fully understand and balance the information needed to provide informed consent and that “it is highly unlikely that a child aged 13 or under would ever be Gillick competent to give consent to being treated with [puberty blockers].” (Id. ¶ 145.) The court further ruled that it was doubtful that children aged 14 or 15 could understand and weigh all the criteria to “have sufficient understanding to give consent,” although it noted “the increased maturity of the child means that there is more possibility of achieving competence at the older age.” (Id.)
For children aged 16-18, while the Court has inherent jurisdiction to protect children if it considers the treatment is not in their best interests, it considered that, as long as the child has sufficient mental capacity and the clinician considers the treatment in the child’s best interests, baring a dispute from the parents, the Court will typically have no role in this matter. (Id. ¶ 146.) The Court did note that clinicians who are uncertain as to whether the treatment is in the long-term best interests of a 16-17 year old may wish to involve the Court. (Id.)
The Court considered that the life-changing long-term impact of the treatments and the innovative and experimental nature of the treatments mean that clinicians prescribing such treatment should consider obtaining court authorization prior to starting any treatment in under 16s with drugs prescribed for the purposes of blocking puberty:
There is a real benefit in the court, almost certainly with a child’s guardian appointed, having oversight over the decision. In any case, under the inherent jurisdiction concerning medical treatment for those under the age of 18, there is likely to be a conflict between the support of autonomy and the protective role of the court. As we have explained above, we consider this treatment to be one where the protective role of the court is appropriate. (Id. ¶ 149.)
Result of the Ruling
The Tavistock and Portman NHS Trust sought permission to appeal the order on December 22, 2020, and the Court announced that there will be a stay on the implementation of its judgment until any appeals are determined.
The judgment applies to all treatment involving puberty blockers for those under the age of 16, regardless of whether the provider is an NHS trust or private clinic. As a result of the ruling, the NHS has updated its Service Specifications for GIDS with the statement that, until it has “more clarity,” no new referrals will be accepted for its services for patients under the age of 16 without a “best interests order” issued from the court. The NHS is continuing to following the treatment plan for existing patients with puberty blockers, and it has stated that it will do so “unless patient and their clinician decides to withdraw from puberty blockers or if a court decides it is not in an individual’s best interests.”
GIDS is working with the Royal Colleges and other experts to design a clinical review process that would start in January 2021, which“will provide the basis for making best interest applications to the Courts in cases where it is recommended that treatment should continue.” It has stated that it will not stop prescribing the medication unless, upon application to the court, the court determines it is not in the patient’s best interests to continue. While it will undertake clinical reviews of 16- and 17-year-old individuals, it has stated that it will only make a best interests application in these cases if there is any doubt about the patient’s best interests.
The NHS is continuing to undertake a wide-ranging review into the gender identity services it provides for young people, which was announced in September 2020, prior to the publication of the ruling.