Does the Affirmative Care Model Protect Kids and Families? A Comprehensive Review
By Genspect guest author Lynn Chadwick. See here for the references cited in this article.
In a recent sweeping review, authors Steven B. Levine, E. Abbruzzese and Julia M. Mason have outlined concerns broadly experienced by the parents of gender questioning children, youth, and young adults. They describe the parent experience as follows:
The poor quality of mental health evaluations has been a point of significant discontent for a growing number of parents of gender dysphoric youth. Increasingly, parents have formed dozens of support groups in North America, Europe, Australia and New Zealand, united in their objections to the idea that the best or the only treatment for their gender dysphoric children is affirmation (Genspect, 2021). These distressed parents, recognizing that son or daughter may eventually decide to present to others as a trans person, want a psycho therapeutic investigation to understand what contributed to the development of this identity and an exploration of noninvasive treatment options. Frequently, they cannot find anyone in their community who does not recommend immediate affirmation.
The plight of the families unable to find specialists capable of conducting thorough evaluations draws attention to the widespread acceptance of medical interventions for gender-dysphoric youth as the first line of treatment. The problem is that such care has been established through precedent rather than though scientific demonstrations of its efficacy. We contend that parents and patients have a right to know this, and that it is the professionals’ responsibility and obligation to inform them of the state of knowledge in this arena of care.
The authors point out that the adoption of a gender identity by a young person is of uncertain permanence (Littman, 2021; Ristori & Steensma, 2016; Singh, Bradley, & Zucker, 2021; Vandenbussche, 2021; Zucker, 2017). Furthermore, gender transition interventions carry uncertain outcomes and rigorous scientific studies are lacking (National Institute for Health & Care Excellence, 2020a; 2020b). The ethical implications of such irreversible measures as puberty blockers, cross sex hormones, and surgeries offered to young people under an affirmative care model are serious.
Ethical concerns about inadequate informed consent for trans-identified youth have several potentially problematic sources, including erroneous assumptions held by professionals; poor quality of the evaluation process; and incomplete and inaccurate information that patients and family members are given.
To respond to growing demand, an innovative informed consent model of care has been developed. Under this model, mental health evaluations are not required, and hormones can be provided after just one visit following the collection of a patient’s or guardian’s signature. The provision of transition services under this model of care is available not just to those over 18, but for younger patients as well.
Although following the informed consent model of care for hormones and surgeries for youth may diminish clinicians’ ethical or moral unease (Vrouenraets et al., 2020), we believe this model is the antithesis of true informed consent, as it jeopardizes the ethical foundation of patient autonomy. Autonomy is not respected when patients consenting to the treatment do not have an accurate understanding of the risks, benefits, and alternatives.
Concerns extend to young adults, as noted:
It is well recognized that brain remodeling proceeds through the third decade of life, with the prefrontal cortex responsible for executive function and impulse control the last to mature (Katz et al., 2016). The growing number of detransitioners who had been old enough to legally consent to transition, but who no longer felt they were transgender upon reaching their mid-20’s, raises additional concerns about this vulnerable age group (Littman, 2021; Vandenbussche, 2021).
Multiple factors are at play which threaten ethical standards for these patients. They include assumptions held by professionals which influence the integrity of the process and poor or nonexistent evaluations. According to the authors,
Gender dysphoric children and teens can intensely occupy the belief that their lives will be immensely improved by transition. Clinicians who have embraced the gender-affirmative model of care operate on the assumption that children and teens know best what they need to be happy and productive. These professionals, responding to the youths’ passionate pleas, see their role as validating the young person’s fervent wishes for hormones and surgery and clearing the path for gender transition. In doing so, they privilege the ethical principle of respect for patient autonomy over their obligations for beneficence and non-maleficence.
Some even claim that gender-affirmative care will successfully treat not only depression and anxiety but will also resolve neurocognitive deficits frequently present in gender dysphoric individuals. These latter assertions have proven controversial even among the proponents of gender-affirmative interventions.
It is common for gender-affirmative specialists to erroneously believe that gender-affirmative interventions are a standard of care. Despite the increasingly widespread professional beliefs in the safety and efficacy of pediatric gender transition, and the endorsement of this treatment pathway by a number of professional medical societies, the best available evidence suggests that the benefits of gender-affirmative interventions are of very low certainty (Clayton et al., 2021; National Institute for Health & Care Excellence, 2020a;, 2020b) and must be carefully weighed against the health risks to fertility, bone, and cardiovascular health.
The authors cite the state of flux in the current diagnostic criteria, the absence of randomized, controlled studies, the failure of long term follow up studies to demonstrate positive impacts on mental health, lack of data on post transition regret and detransition, and the prevalence of studies which demonstrate a high prevalence of serious mental health and social problems in post transition patients, as well as increased risk of suicide among post transitioned adults. Additionally,
While the research into the phenomenon of social influence as a contributor to trans identification of youth is still in its infancy, the possibility that clinicians are providing treatments with permanent consequences to address what may be transient identities in youth poses a serious ethical dilemma.
Parents are frequently given incorrect or incomplete information when making decisions during this process.
Problematically, it is common for gender clinicians to emphasize the risk of suicide if a young person’s wish to transition gender is not immediately fulfilled. There is a significant amount of misinformation surrounding the question of suicidality of trans-identified youth. Providers of gender-affirmative care should be careful not to unwittingly propagate misinformation regarding suicide to parents and youths. They should also be reminded that any conversations about suicide should be handled with great care, due to its socially contagious nature.
Suicide among trans-identified youth is significantly elevated compared to the general population of youth. (Biggs, 2022; de Graff et al., 2020) However, the ‘transition or die’ narrative, whereby parents are told that their only choice is between a ‘live trans daughter or a dead son’ (or vice-versa), is both factually inaccurate and ethically fraught. Disseminating such alarmist messages hurts the majority of trans-identified youth who are not at risk for suicide. It also hurts the minority who are at risk, and who, as a result of such misinformation, may forgo evidence-based suicide prevention intervention in the false hopes that transition will prevent suicide.
Parents are typically not informed of the high rate of desistance and natural resolution of gender dysphoria in children. There is a lack of clear information regarding adolescent-onset gender dysphoria, and the rate of detransition and regret appears to be accelerating. Previous studies on transition regret were carried out on a much different cohort that the one seen in current times. Protocols are based on low quality evidence.
Indeed, given that regret may take up to 8-11 years to materialize, many more detransitioners are likely to emerge in the coming years. Detransitioner research is still in its infancy, but two recently published studies examining detranstitioner experiences report that detransitioners from the recently-transitioning cohorts feel they had been rushed to medical gender-affirmative interventions with irreversible effects, often without the benefit of appropriate, or in some instances any, psychological exploration (Littman, 2021; Vandenbussche, 2021).
In the context of providing puberty blockers and cross-sex hormones, the designation of “very low certainty” signals that the body of evidence asserting the benefits of these interventions is highly unreliable. In contrast, several negative effects are quite certain. For example, puberty blockade followed by cross-sex hormones leads to infertility and sterility. Surgeries to remove breasts or sex organs are irreversible. Other health risks, including risks to bone and cardiovascular health, are not fully understood and are uncertain, but the emerging evidence is alarming.
Current affirmative care is modeled after what is commonly known as the Dutch Protocol, documented in two studies (de Vries et al., 2011; deVries et al., 2014) These studies reported mixed results and the participants were heavily screened and not representative of the current cohort of patients seen by gender practitioners.
The Dutch study subjects’ high level of psychological functioning at 1.5 years after surgery, which was the study end point, was an impressive feat. However, both of the studies suffer from a high risk of bias due to their study design, which is effectively a non-randomized case series—one of the lowest levels of evidence (Mathes & Peiper, 2017; National Institute for Health & Care Excellence, 2020a). In addition, the studies suffer from limited applicability to the populations of adolescents presenting today (de Vries, 2020). The interventions described in the study are currently being applied to adolescents who were not cross-gender identified prior to puberty, who have significant mental health problems, as well as those who have non-binary identities—all of these presentations were explicitly disqualified from the Dutch protocol. Despite these limitations, the Dutch clinical experiment has become the basis for the practice of medical transition of minors worldwide and serves as the basis for the recommendations outlined in the 2017 Endocrine Society guidelines (Hembree et al., 2017).
The medical and surgical sequence of Dutch protocol has been aggressively scaled worldwide without careful evaluations and vetting practiced by the Dutch. The protocol’s original investigators have recently expressed concern that the interventions they described have been widely adopted on four continents without several of the protocol’s essential discriminatory features (de Vries, 2020).
In addition, medical transition is frequently initiated much earlier than recommended by the original protocol. The authors of the protocol were aware that most children would have a spontaneous realignment of their gender identity with sex by going through early- to mid-stages of puberty. The fact that children are transitioned before their identity is tested against the biological reality and before natural resolution of gender dysphoria has had a chance to occur is a major deviation from the original Dutch protocol. Systematic follow-up, reassessments, and tracking and publishing of outcomes are not performed.
Social transition includes such things as name and pronoun changes, and measures that enable young people, including preschoolers, to imitate social and outward approximations of the opposite sex. These interventions are commonly seen as harmless and reversible, but the effects have not been studied and may have harmful psychological effects.
Informed consent for social transition represents a gray area. Evidence suggests that social transition is associated with the persistence of gender dysphoria (Hembree et al., 2017; Steensma et al., 2013). This suggests that social gender transition is a form of a psychological intervention with potential lasting effects (Zucker, 2020). While the causality has not been proven, the possibility of iatrogenesis and the resulting exposure to the risks of future medical and surgical gender dysphoria treatments, qualifies social gender transition for explicit, rather than implied, consent.
The authors note in their conclusions:
Sixty years of experience providing medical and surgical assistance to transgender-identified persons have seen many changes in who is treated, when they are treated, and how they are treated. Today, the emphasis has shifted to the treatment of the unprecedented numbers of youth declaring a trans identity. As adolescents pursue social, medical, and surgical interventions, health care providers may experience unease about patients’ cognitive and emotional capacities to make decisions with life-changing and enduring consequences.
For youth less than the age of majority, informed consent via parents provides a legal route for treatment but it does not make the decisions to transition, provide hormones, or surgically remove breasts or testes less fraught with uncertainty.