Ethics of Pediatric Gender-Affirming Care: A Case Study Comparison

Clinical Communication

During the first appointment with the pediatric endocrinologist and psychologist, Emma’s parents inquired about the range and timing of medical transition interventions. The care team described the typical approach to pubertal suppression (“puberty blockers”) and the process for completing a readiness evaluation prior to initiating pubertal suppression, following the WPATH SOC, Version 7 (v7; Coleman et al., 2012) and the Endocrine Society Clinical Practice Guideline (Hembree et al., 2017). Pubertal suppression is a reversible intervention initiated in the early stages of puberty using GnRHa to suppress the development of unwanted secondary sex characteristics and allows a young person time to mature before making decisions about GAHs during adolescence (Coleman et al., 2012).

Emma met the criteria for a diagnosis of gender dysphoria, and the treatment plan included annual appointments with the pediatric endocrinologist to assess her pubertal progression and ongoing supportive therapy with a community-based, gender-affirming therapist to help the family navigate Emma’s social transition, explore her interest in medical interventions, and address symptoms associated with ADHD and GAD.

Emma’s parents expressed concern about the potential impact of GnRHa on neurocognitive development. There is limited research evaluating the impact of pubertal suppression treatment on structural and functional neurocognitive changes during adolescence, and existing studies are inconclusive regarding long-term effects (Chen et al., 2018, 2020). To avoid any potential negative impact of GnRHa on neurocognitive development, Emma’s parents proposed an alternative treatment approach that would replace pubertal suppression with estrogen therapy when Emma starts puberty—an approach that is not consistent with the staged recommendations of the WPATH SOC that explicitly identifies pubertal suppression as the medical treatment of choice at Tanner stage II of pubertal development.

At age 11, pubertal development progressed to Tanner stage II, and Emma and her parents initiated care with a psychologist in the gender health program to discuss decision-making about future medical interventions. The psychologist provided psychoeducation about treatment reversibility and timing, noting that pubertal suppression with GnRHa is a fully reversible intervention initiated at a younger developmental stage than estrogen, which is an intervention with some irreversible effects. To address Emma’s limited understanding of pubertal development, treatment included psychoeducation about expected pubertal changes with no medical intervention. Education about reproduction focused on the impact of puberty blockers and estrogen on sperm maturation and future family formation options (e.g., experimental cryopreservation of immature tissue and adoption). Emma and her parents determined they were not interested in experimental fertility preservation and understood that the decision to proceed with puberty blockers would stop sperm maturation.

Emma described limited discomfort with her body (i.e., her penis) but reported worries about eventual pubertal changes such as growing a beard, developing an Adam’s apple, and a deeper voice. She understood the feminizing effects of estrogen (e.g., breast development) but did not express urgency to achieve these changes, stating that few of her cisgender peers had developed breasts. Emma’s parents observed that her mood and behavior improved significantly after she transitioned socially, and they believed estrogen would help maintain these gains. Her parents considered the unknown effects of pubertal suppression on neurocognitive development to be a significant risk and believed it was unnecessary to delay estrogen initiation given Emma’s stable gender identity. Her parents also noted that starting estrogen rather than GnRHa would allow Emma to progress through puberty at the same developmental pace as her cisgender peers.

Ethical Considerations

Clinical Communication

During Jayden’s initial visit, the team psychologist addressed his parents’ questions about his gender development and goals for social and medical gender affirmation. The treatment plan, developed in collaboration with Jayden and his parents, included ongoing follow-up with the team psychologist for gender-specific support and continued involvement with his local mental health team for the management of his depression and anxiety. Despite their initial concerns about the validity of Jayden’s gender experience and associated goals, his parents agreed to schedule an initial consultation with a physician to gather additional information about testosterone.

After multiple visits with the physician and reviewing the risks, benefits, and limitations of hormone treatment with Jayden and his father, the physician determined that Jayden met the eligibility criteria for initiation of testosterone. With his father’s consent, Jayden began testosterone injections and soon reported improvements in his mood, as well as increased affirmation from his parents regarding his gender and associated goals. However, Jayden’s father later informed the psychologist that he felt he had not been fully consulted by the physician about beginning testosterone and that he was in “reluctant agreement” with Jayden’s current treatment plan.

Several months later, Jayden expressed a desire to start the referral process for “top” surgery with a plan to pursue surgery at age 16. He requested the psychologist provide a referral letter so that he could schedule a consultation with a plastic surgeon. Jayden’s father stated that he would not prevent Jayden from pursuing this plan; however, he was also not willing to provide any financial assistance, as he felt Jayden was too young to make the decision to pursue surgery. Jayden also had not yet discussed his surgical plans with his mother, who was also his legal guardian and the policyholder of Jayden’s health insurance. While the subject of health insurance is indeed an important caveat, it is beyond the scope of this article to pursue here.

Ethical Considerations

According to the WPATH SOC v7, eligibility criteria for chest surgery include persistent, well-documented gender dysphoria; capacity to make a fully informed decision and to give consent for treatment; and, if significant medical or mental health concerns are present, they must be reasonably controlled (Coleman et al., 2012; Table 1). The guidelines also emphasize that refusing timely medical interventions for adolescents is not a neutral option and might prolong gender dysphoria and contribute to gender minority stress experiences, although this statement is made in direct reference to the potential consequences of withholding pubertal suppression and GAH therapy, rather than surgical intervention per se.

The psychologist determined that Jayden appeared to meet the above-mentioned eligibility criteria for surgical intervention. However, given Jayden’s legal status as a minor and financial dependence on his parents, the irreversible nature of the intervention, and parental skepticism and ambivalence toward previous medical interventions, the psychologist communicated to Jayden that the level of parental support and its potential impact on Jayden’s surgical decision-making and postoperative well-being needed to be explored further prior to providing the referral.

Pediatric Decision-Making

In general, parents consent to medical treatment on behalf of their minor children because capacity in children is not presumed (Campo-Engelstein & Chen, 2016). The American Academy of Pediatrics recommends children participate in medical decision-making through a process of “assent to treatment ‘to the extent of their capacity,’” and the child’s known wishes and values should inform parental proxy decision-making (Campo-Engelstein & Chen, 2016, p. 260). Child assent is especially important in situations that are more subjective and personal (i.e., deeply connected to one’s identity and values). Conditions like pneumonia, for example, can be diagnosed objectively using a physical exam, laboratory tests, pathology, and radiological imaging that confirm the presence of a pulmonary infection, and pharmaceutical treatments can be determined based on these objective findings. Gender dysphoria, in contrast, is a more subjective diagnosis based on a young person’s self-report of distress associated with the discordance between intrinsic gender identity and designated sex at birth. When “treatment decisions become increasingly subjective,” commensurate deference to the child ought to be given because the child is the best source of information to identify and clarify their wishes, values, and preferences (Campo-Engelstein & Chen, 2016, p. 260).

This means that, in Emma’s case, we should prioritize Emma’s preference for pubertal suppression over her parents’ request to proceed with hormone therapy. Emma is best situated to know if and when she is ready for hormone therapy; a decision to irreversibly alter one’s body to align with one’s gender identity is so deeply personal that Emma is the only one who can and should make this decision. As her proxy decision-makers, Emma’s parents could dismiss her wishes, but to accede to their treatment of choice would violate a near-universal principle in medicine: negative autonomy rights. These are the rights to noninterference and refusal of care, which court cases have “established as nearly inviolable” (Orr, 2013, p. 245). Patients with capacity are permitted to decline care even if it is lifesaving. Although Emma probably lacks capacity given her age, patient preferences are morally valuable and should still guide decision-making (Navin & Wasserman, 2019). We should be cautious about overriding patients’ preferences regarding bodily integrity, particularly when subjective preferences and values figure prominently.

At age 15, Jayden may have the capacity to make decisions regarding his care but lacks parental support to access care as a minor. If we approach the age of majority as a somewhat arbitrary cutoff, we can appreciate a nuanced view of decisional capacity in minors in which capacity is gained gradually. The literature on child and adolescent decision-making capacity is compelling; from a neurodevelopmental vantage, children as young as 12 can demonstrate the capacity to make medical decisions in a context-dependent manner with adequate support (Grootens-Wiegers et al., 2017). In another study, an overwhelming majority of adolescents were assessed as competent to consent to pubertal suppression (Vrouenraets et al., 2021). Jayden could be emotionally and cognitively mature enough for decisional capacity, and it may seem unfair to deny him decision-making solely because of his age, especially when someone only a few years older would be automatically assumed to have capacity.

Furthermore, there are some situations in which minors can make medical decisions without parental consent, including mental health, substance use disorder, reproductive health, and sexual health (AMA Council on Ethical and Judicial Affairs, 2014). Although laws vary by state, one may contend that gender-affirming treatment can reasonably be subsumed under existing exemptions for reproductive and sexual health. One may also argue that gender-affirming medications should fall under the purview of the state, as do other treatments for which there is a compelling reason, such as public health, to protect and provide them (Priest, 2019).

Jayden’s situation is also complicated by the fact that his parents are divorced and are not equally informed of Jayden’s surgical plans. Ideally, all involved parties—Jayden, his parents, and his healthcare team—should agree on a way forward. If this is not possible, however, then alternative legal recourse may need to be pursued. In some states, only one parent’s consent is required to pursue treatment, even if the other parent objects.

Standard of Care

Standard-of-care guidelines ensure that treatment follows best practices and adheres to ethical norms. Courts have ruled that the standard of care refers to “what a minimally competent physician in the same field would do in the same situation, with the same resources” and that violating the standard of care is a “breach of duty,” an aspect of medical malpractice (Moffett & Moore, 2011, pp. 109, 112). Ideally, parents would choose standard medical care for their children, but this is not always the case for a variety of reasons, including values, medical distrust, and financial limitations. In such cases, clinicians should ensure that parents and children understand the consequences of declining or deviating from standard treatment.

Despite the fact that Jayden meets the WPATH SOC v7 criteria for gender-affirming surgery (Table 1), his parents do not fully support this intervention. Emma’s parents express apprehension about the standard of care (i.e., staged progression from puberty-suppressing medication to estrogen therapy) due to concerns about the potential effects of the intervention on neurocognitive development. Emma’s parents propose a treatment timeline that accelerates the progression at an earlier developmental stage than recommended, and following this proposed treatment timeline may be classified as medically inappropriate.

While there may be instances when it is appropriate to deviate from the standard of care, such deviations should not be taken lightly since the standard of care serves as a safeguard for all involved parties. Positive autonomy rights—the rights to something—are limited in medicine. In other words, the argument “that a patient’s demand obligates a physician to provide a treatment” is uncompelling due to physicians’ right to conscience (Orr, 2013, p. 245). Thus, physicians are not required to honor the requests of patients (or their surrogates) to provide care that is considered unnecessary, unreasonable, harmful, or beyond an acceptable standard of care. Since healthcare professionals are not legally or ethically obligated to provide treatment deemed medically inappropriate, Emma’s healthcare team does not have to acquiesce to her parents’ request for accelerated hormone therapy.

Reversibility of Treatment Options

One of the challenges with providing gender-affirming care for minors is that certain decisions, including care options with permanent consequences, sometimes need to be decided before minors reach the age of majority. Whereas pubertal suppression suspends endogenous pubertal changes in the body, GAHs and surgeries do lead to changes, some of which are irreversible. The degree of reversibility of these treatments is important with respect to patient autonomy. Reversible treatments such as pubertal suppression preserve the future autonomy of minor patients until they are mature enough to make medical decisions involving some degree of irreversibility. By maintaining an “open future” in which no options are permanently closed to the child, reversible treatments uphold children’s current and future autonomy (Feinberg, 1980); children receive the medical care they want and need now (e.g., puberty blockers) while being able to make fully informed decisions when they are more emotionally and cognitively mature. In short, the reversibility of pubertal suppression protects the future autonomy of pediatric patients.

However, we do not claim that irreversible treatments are less ethically permissible—for instance, removing a malignant tumor from a child’s body is ethical even though it is a permanent change. GAHs and chest surgery may indeed have irreversible effects, but both are offered and appropriate for minors who meet relevant criteria. We instead argue that the degree of treatment reversibility should play a role in our ethical deliberation. Partially reversible or irreversible treatments should be approached more cautiously because such decisions made on behalf of the minor child could be unwanted in the future. Careful consideration of hormone therapy is warranted to maximize minors’ current and future rights and options. Since children’s capacity increases with age, older children may be better equipped to make informed decisions regarding such treatments. However, continuing to delay hormone treatment due to concerns about a minor’s decision-making capacity can also lead to psychosocial harm given that the minor will be one of the only in their peer group who has not begun puberty.