Informed consent and access to gender-affirming treatment for children in South Africa

3 1 General common law and constitutional law approach to informed medical consent

Informed consent as a legal concept exists in our common law in terms of Roman Dutch Law and the maxim “volenti non fit injuria” which translates into “to a willing person, injury is not done.”23 Based on the interpretation of common law through our courts, the principle of informed consent has been recognised and developed. The issue of informed consent in our law was dealt with in the precedent-setting case of Stoffberg v Elliot24 in 1923 when the High Court determined that consent was necessary for medical surgery to ensure that an individual’s right to bodily autonomy was not violated. This principle of autonomy was confirmed in 1957 in the case of Esterhuizen v Administrator Transvaal where the Court confirmed that consent was a requirement to the administration of any medical procedure.25

Perhaps of more importance to the issue under discussion is the case of Castell v de Greef,26 which is a 1994 case before a full bench of the Cape Town High Court in 1994. In this case, the plaintiff successfully sued the plastic surgeon (defendant) for a failed mastectomy operation. This was after the operation was recommended by the plastic surgeon as a precautionary measure. Unfortunately, the operation was not a success. The plaintiff sued the plastic surgeon successfully for damages.27

An issue that arose was the duty of disclosure by a surgeon when obtaining consent for the procedure. The decision of the Court in the Castell matter is important because the Court unpacked the issue of what informed consent entails with respect to health and medical treatment.28 The court found that certain elements are critical for the process of obtaining consent for a person to be considered as having given consent. The Court explained the minimum level of consent currently required in South African law as follows:

the consenting party ‘must have had knowledge and been aware of the nature and extent of the harm or risk; (b) the consenting party ‘must have appreciated and understood the nature and extent of the harm or risk’; (c) the consenting party ‘must have consented to the harm or assumed the risk’; (d) the consent ‘must be comprehensive, that is extend to the entire transaction, inclusive of its consequences.’ 29

Some authors posit that the use of the word “comprehensive” means that although the patient has consented to the operation, the conversation around the informed consent between the doctor and the patient does not stop upon such consent, but is a continuous discourse. This involves the duty of the doctor to inform the patient of what is expected post-operation once she/he/they has/have been discharged. According to Thomas, in a “patient-oriented approach” this is an important aspect that should be included in the consent process.30 From this reasoning, consent is not merely a response to a question being asked. In law, it is viewed as requiring a specific process to be undertaken in an ongoing manner. The Castell matter explained that a doctor only has an obligation to disclose material risks associated with the proposed treatment or operation. The Court stated that to determine if a risk material depends on the specific circumstances of each case and whether “(a) a reasonable person in the patient’s position, if warned of the risk, would be likely to attach a significance to it; or (b) the medical practitioner is or should reasonably be aware that the particular patient, if warned of the risk, would be likely to attach significance to it.”31 This test was however not applied by the Court - the common law test, “a risk is material if the person who consented would not have done so had the risk been known to him”, is what Court have applied in South Africa.32

The Court in Castell confirmed the patient-centric nature of how informed consent is understood. Accordingly, in South African law the patient must have access to all the relevant information related to their diagnoses and treatment, but that they also appreciate and understand the risks involved in the treatment as well as the very real harm they may suffer because of the treatment. The approach taken in the Castell matter is consistent with the framework of the Constitution of South Africa especially the entrenchment of rights to human dignity, and bodily integrity which emphasises that South African society is founded on the underlying values of individual autonomy and self-determination.33

More recently and under our constitutional democracy, the High Court has confirmed the right to bodily autonomy and for an individual to make decisions about their bodies in Christian Lawyers Association v the Minister of Health,34 which dealt with the adoption of the Choice of Termination of Pregnancy Act 92 of 1996. The Court in the Christian Lawyers Association matter emphasised that the recognition of the right of every individual to self-determination is an imperative entrenchment under the Constitution and particularly the following provisions of the Bill of Rights namely:

• section 12(2), “everyone” has the right to bodily and psychological integrity which includes the right “to make decisions concerning reproduction” and “the security and control over their body”.
• section 27(1)(a), “everyone” has the right to have access to “health care services”.
• section 10, “everyone” has “inherent dignity and the right to have their dignity respected and protected.”35

Consent cannot be hurried. The patient must be given enough time to consider the information before making an informed decision. Our Courts have confirmed this approach in the case of Isaacs v Pandie36 where the plaintiff, a 32-year-old woman, was sterilised following a pre-planned caesarean operation with her consent. The plaintiff argued that performing the sterilisation without her consent was a breach of contract and violated the provisions of the Sterilisation Act 44 of 1998 and certain guidelines as published by the Medical and Dental Professions Board of the Health Professions Council of South Africa (HPCSA). 37

The Court in its decision placed emphasis on time and consideration of the information before the patient for informed consent to be seen as having been given.38 Furthermore, it is the physician’s obligation to ensure that they have conveyed all the relevant information to the patient, and that such information has been understood, and that the patient has been afforded sufficient time to process such information. 39

It appears that the appropriate approach is the one taken by the court in the Christian Lawyers Association’s case where it was stated that there is no one-size-fits-all approach to the issue of consent.40 It is simply put to be decided on a case-by-case basis given the physician’s assessment of the patient’s emotional and intellectual capacity and maturity to appreciate and understand the information that they have been provided with. The Court specifically stated that the Choice of Termination of Pregnancy Act makes informed consent and not age, the cornerstone of its regulation of access to termination of pregnancy.41 This is indeed not only limited to termination of pregnancy.

4 1 The Children’s Act 38 of 2005

The Children’s Act 38 of 2005 (hereinafter the Children’s Act) is the primary law which governs the provision of a range of rights and services for children and families. The Children’s Act aims to support families in ensuring their children’s well-being, to prevent the abuse and neglect of children, and to ensure that children in need of care and protection are provided with appropriate care.50 The Children’s Act in essence deals with the rights of minor children in that it sets the legal age of majority at 18 years in section 17 of the Act.

Sections 129 (2)(a) and 129(2)(b) of the Children’s Act, provide that a child can consent to his or her own medical treatment or to the medical treatment of their child. Provided that the child is aged 12 or older; and is of sufficient maturity and has the mental capacity to understand the benefits, risks, social and other implications of the treatment. Where the child is under 12 years of age, parental consent is necessary.

Sections 129(3)(a), 129(3)(b) and 129(3)(c) of the Children’s Act empower a child to consent to the performance of surgical operation with the assistance of his/ her/their parents. The discussion herein focuses on the contents of section 129(2) on ‘medical treatment’ and does not delve into the position relating to surgical procedures. Section 129(2) of the Children’s Act makes specific reference to the term “medical treatment”, but does not define what this means. It appears that South African legislation has not attempted to define the term ‘medical treatment’ as the Children’s Act, National Health Act; Mental Health Care Act 2002; the Prevention and Treatment of Substance Abuse Act 2008,51 or any other national health legislation and policy entail no such definition. Nonetheless, the GAHC Guidelines state that the term “medical treatment” is widely understood to be a manifestation of the right to health as provided for in section 27 of the Constitution.52 Furthermore, the right to health must be understood as a right to the enjoyment of a variety of facilities, goods, services and conditions necessary for the realisation of the highest attainable standard of physical and mental health. 53

Central to recognising children’s rights to consent to medical treatment is the right of children to participate in all matters that affect them, which is codified in our Children’s Act and the UN Convention of the Rights of the Child.54 This is a core principle which asserts that children have the right to express their views and to participate in any matter concerning that child based on the child’s age, maturity and stage of development.55 Children aged 12 and above are permitted to seek out medical assistance, sexual and reproductive health interventions and HIV Tests among others.56

The Constitution also guarantees children the rights to equality,57 dignity,58 freedom and security of the person,59 and health, including the right to make decisions about their own reproduction among others.60 In addition, the Constitutional Court has recognised the rights of children to privacy and human dignity.61 The guarantee of everyone’s right to bodily and psychological integrity, also called the right to physical integrity, which includes the right to make decisions concerning reproduction; the right to security in and control over one’s body; and the right not to be subjected to medical or scientific experiments without informed consent is a paramount right. 62

Section 129 of the Children’s Act must be read with sections 6, 7 and 8 of the National Health Act in so far as it enhances what the process of obtaining informed consent entails. In particular, section 129(2)(b) requires that the child should have sufficient maturity and mental capacity to understand the benefits and risks, social and other implications of the treatment, which in my view cannot be obtained without a process as set out in section 6 of the National Health Act. The additional caveat that I would argue is needed here, is that the process set out in section 129(2)(b) has to take place in a child-appropriate manner and information must be provided in a manner that is accessible to the specific child. In addition to the provisions of section 129, section 13 of the Act is instructive in so far as providing for children’s rights to access information on health care:

13. (1) Every child has the right to -

(a) have access to information on health promotion and the prevention and treatment of ill-health and disease, sexuality and reproduction;

(b) have access to information regarding his or her health status;

(c) have access to information regarding the causes and treatment of his or her health status; and

(d) confidentiality regarding his or her health status and the health status of a parent, care-giver or family member, except when maintaining such confidentiality is not in the best interests of the child.

(2) Information provided to children in terms of this subsection must be relevant and health status; and must be in a format accessible to children, giving due consideration to the needs of disabled children.

Therefore, those providing medical treatment to children have a defined obligation to provide children with extensive information which would then inform the process towards the child giving consent to any medical treatment.

4 2 Do the Gender Affirming Healthcare Guidelines63 (GAHC Guidelines) align with the Children’s Act and National Health Act in relation to informed consent for gender reaffirming treatment for children

The GAHC Guidelines were adopted by Southern African HIV Clinicians Society and the purpose of these guidelines is “to provide evidence-informed best practice recommendations to enable health care providers to offer quality, affirming services to transgender and gender diverse clients as well as to support these clients when accessing healthcare services”.64 One of the central issues in the GAHC Guidelines is how to approach the cases of children who present for gender-affirming treatment such as hormone treatment- puberty blockers. The GAHC Guidelines provide that in general there should be differentiation between children under the age of 12 years and those over the age of 12 years in so far as accessing gender-affirming treatment.65 In relation to children under the age of 12, the GAHC Guidelines provide that the healthcare providers must engage parents/legal guardians for psychosocial care for TGD children and address the limitations of confidentiality with the child while assuring the child that they support them.66 In so far as children older than 12 years old, the Guidelines express that the approach to informed consent for psychosocial care is more complex as it may include mental health evaluation, support and counselling as well as medical intervention in the form of puberty suppression and possible hormone therapy. 67

In so far as informed consent for puberty suppression or hormone therapy for adolescents the GAHC Guidelines indicate that the Children’s Act considers children above 12 years of age competent and of sufficient capacity to give informed consent to the treatment.68 Importantly, the Guidelines indicate that informed consent is a continuous process rather than a single event and clinicians must observe that adolescents have evolving capacity over time as they mature.69 The GAHC Guidelines go further to provide how informed consent from an adolescent should be obtained and clearly indicate that

(i) it should be in an collaborative, supportive context of a multi-disciplinary team with noted expertise in assessing and intervening in adolescent physical, psychological and social development; (ii) with an appreciation of the influence of family dynamics, as far as possible with the support and involvement of parents/legal guardians as better family support for TGD youth is associated with better mental health outcomes -however the lack of support does not preclude access to treatment; and (iii) with emphasis that the adolescent needs to understand all risks and benefits of the treatments and have considered the reproductive health implications and options.70

The GAHC Guidelines go further to detail the approach to informed consent for surgery for TGD adolescents, but that is beyond the scope of this article. 71

The GAHC Guidelines provide that psychosocial care and treatment to children must be approached in a manner that considers the child as an individual, as a member of a family, as a member of a school; as a member of community and as member of broader society.72 The GAHC Guidelines appear to follow the provisions of the Children’s Act in so far as the approach to the age of consent to medical treatment is concerned, while providing crucial guidance as to how informed consent must be obtained from children of 12 and above. It is also encouraging that these Guidelines emphasise that providing informed consent is a process and not an event. This holistic approach is essential not only to protect children’s short and long-term best interests but also to minimise the risk of medical practitioners being opened up to the risk of litigation, as will be seen from the cases in the United Kingdom where the courts had to deal with whether children can provide informed consent to gender-affirming treatment and surgery.

5 1 Bell v The Tavistock and Portman NHS Foundation Trust 73

The case was a judicial review of the lawfulness of the practice of the Tavistock and Portman NHS Trust, through its Gender Identity Development Service (GIDS) of prescribing puberty-suppressing drugs to children who experience gender dysphoria.74 The puberty-blocking drugs were prescribed to children as young as 10 to halt the process of puberty, that is the biological processes that would otherwise occur and would lead to the development of the primary and secondary sexual characteristics.75

The applicants were Quincy Bell, who was born a female and, at about the age of 15, was prescribed puberty-blocking drugs to halt the process of developing female sexual characteristics.76 She eventually transitioned to a male having taken cross-sex hormones to promote male characteristics and then undergoing surgery.77 A was the second applicant and the mother of a 15-year-old girl. A was concerned that her daughter may be referred to the Gender Identity Development Service and may be prescribed puberty blockers.78 Both Bell and A argued that the practice of prescribing puberty-blocking drugs to children under 18 was unlawful as they lacked the competence to give valid consent to the treatment.79 The Tavistock and Portman NHS Foundation Trust, in their defence, provided details of the procedures followed by medical professionals, including the length of the required pre-procedural assessments and the extensive analysis of the children undertaken by professionals at the clinic.80 They placed emphasis on the amount of information provided to the children regarding the procedure and that they only refer a child aged under 16 for puberty-blocking treatment if the child is considered to be Gillick competent, i.e. if they have “sufficient understanding and intelligence to understand the nature and implications of the proposed treatment”.81

The court had to decide on what are the legal requirements for obtaining consent for the carrying out of medical treatment.82 Importantly, the court was not concerned with deciding whether there were benefits or disbenefits in treating children with gender dysphoria with puberty blocking drugs83. Therefore, the legal issue in the case concerned identifying the circumstances in which a child was competent as a matter of law to give valid consent to treatment.84

The court held that in order for a child to be competent to give valid consent the child would have to understand, retain and weigh the following information:85

1. the immediate consequences of the treatment in physical and psychological terms;
2. the fact that the vast majority of patients taking puberty blocking drugs proceed to taking cross-sex hormones and are, therefore, a pathway to much greater medical interventions;
3. the relationship between taking cross-sex hormones and subsequent surgery, with the implications of such surgery;
4. the fact that cross-sex hormones may well lead to a loss of fertility;
5. the impact of cross-sex hormones on sexual function;
6. the impact that taking this step on this treatment pathway may have on future and life-long relationships;
7. the unknown physical consequences of taking puberty blocking drugs; and
8. the fact that the evidence base for this treatment is as yet highly uncertain.

According to the court, it was highly unlikely that a child aged 13 or under would be competent to give consent to the administration of puberty blockers.86 Furthermore, that it was also doubtful that a child aged 14 or 15 could understand and weigh the long-term risks and consequences of the administration of puberty blocking drugs.87 In so far as young persons aged 16 and over are concerned, the court indicated that the legal position is that there is a statutory presumption that they have the ability to consent to medical treatment, however, given the long-term consequences of the clinical interventions at issue in this case, as well as the innovative and experimental nature of the treatment, clinicians may well regard these as cases where the authorisation of the court should be sought before starting treatment with puberty-blocking drugs.88 The court granted the declarations sought by the applicants,89 however, the matter was appealed by Tavistock and the appeal decision is dealt with hereunder.

Subsequent to the judgment, concerns arose in relation to whether children could consent to medical treatment in general and how this judgment also affected other aspects of decision-making. The judgment, for instance, could be considered to negate the established Gillick Competence90 and the evolving capacity of children. Article 5 of the UNCRC places an obligation on State Parties to respect the roles, responsibilities and rights that parents including, where applicable extended family or community and/or legal guardians exercise and as well as guidance towards their children, that is in accordance or in a manner that is consistent with their evolving capacity. Furthermore, General Comment No 15 (2013) on the right of the child to the enjoyment of the highest attainable standard of health (art 24) provides for the approach to recognising children’s evolving capacities and states, amongst others, that “it is essential that supportive policies are in place and that children, parents and health workers have adequate rights-based guidance on consent, assent and confidentiality”.91 The General Comment further provides that:

children should, in accordance with their evolving capacities, have access to confidential counselling and advice without parental or legal guardian consent, where this is assessed by the professionals working with the child to be in the child’s best interests and that States should clarify the legislative procedures for the designation of appropriate caregivers for children without parents or legal guardians, who can consent on the child’s behalf or assist the child in consenting, depending on the child’s age and maturity. States are enjoined to review and consider allowing children to consent to certain medical treatments and interventions without the permission of a parent, caregiver, or guardian, such as HIV testing and sexual and reproductive health services.92

Some concerns were immediate in that there were children already undergoing gender-affirming treatment and now parents and clinicians questioned whether they could continue such treatment pending the appeal. This led to the AB v Tavistock case discussed below.

5 2 AB v CD 93

While the Bell v Tavistock appeal was pending, a mother, AB, of a child, XY, who was 15 at time of judgement, sought a declaration that she and the father of XY, CD, were able to consent to the administration of “puberty blockers”.94 This was because following Bell v Tavistock, the NHS amended its guidelines so that patients undergoing hormone therapy needed a ‘best interests’ application to the court before treatment could continue.95 Furthermore, in Bell, it was held that a child would need to have Gillick competence to consent to the administration of puberty blockers.96 The first key question was whether the parents still have the legal ability to consent to treatment for their children undergoing hormone therapy.97 The court held that it was irrelevant whether XY was Gillick competent or not. If they were, they could consent on their own behalf. If they were not, then their parents would be able to do so. Where the child does not make the decision themselves, then the parents have the right to provide consent for their child if they deem it to be in the child’s best interests.98 Therefore held that the parents did have the right to consent to that treatment. 99

The second question before the court was whether the administration of puberty blockers fell under a special category of medical treatment which requires the consent of the Court on application before they can be prescribed.100 Furthermore, even if the answer to the above is “no”, it is a matter of good practice that an application should be made to the court.101

The court looked at other cases and treatments that could fall under the “special category” and determined that these were largely fact-specific and in any case very limited and puberty blockers did not fall into this definition.102 Lieven J continued that, while Bell v Tavistock had cast doubt on the medical basis of puberty blockers, AB and CD would have weighed up the considerations prior to allowing XY to begin treatment.103 XY was not found to have overly pressurised their parents to consent to treatment, although it was admitted this may not be the case in all other situations.104 Where the parents are under pressure, or the child’s treatment team are conflicted as to how to proceed, then the matter should be referred to the court. 105

5 3 Bell v Tavistock 2106

The Court of Appeal had to decide whether the court in Bell v Tavistock was correct in declaring that it was highly unlikely that children 13 year or under would be Gillick competent to give consent to be treated with puberty blockers and that it was very doubtful that those aged 14 and 15 could understand the long-term risks and consequences of treatment in such a way to have sufficient understanding give consent.107 Tavistock argued that court a quo had misapplied the Gillick competence test; that the court’s conclusions were inconsistent with the Family Law Reform Act of 1969; that the court was incorrect that puberty blockers for gender dysphoria were experimental with life long and life changing effects; that the court approached the evidence adduced by the parties incorrectly and that the approach of the court discriminates against children with gender dysphoria and cannot be justified and therefore violates article 14 of the European Convention on Human Rights.108

We focus, for the purpose of our discussion, on the Appeal Court’s approach to the issue of the ability of children to consent to gender-affirming treatment. In this regard, the Appeal Court found that the court a quo should not have granted the declaration.109 On the issue of whether the court a quo should have given guidance as to how children with gender dysphoria’s consent should be confirmed by a court, the Court of Appeal stated that although the guidance stemmed from an understandable concern, it was not for the court to generalise about the capability of persons of different ages to understand what is necessary for them to consent to the administration of puberty blockers.110 That, moreover, it would be unhelpful for the court to make provision for a process of obtaining court-sanctioned approval as it would effectively result in a denial of treatment for those unable to afford such processes and would, in any event, lead to unnecessary delays.111 With reference to the Gillick competence, the Appeal Court stated that it is for the clinicians rather than the court to decide on competence and particularly that “save where statute otherwise provides, a minor’s capacity to make his or her own decision depends upon the minor having sufficient understanding and intelligence to make the decision and is not to be determined by reference to any judicially fixed age limit.” 112

The Appeal Court found that it was inappropriate for the court a quo to have given guidance concerning when a court application would be appropriate and to reach general age-related conclusions about the likelihood or probability of different cohorts of children being capable of giving consent.113 However, the Appeal Court recognised that there may be instances where applications to the court may be appropriate.114