Introduction
The self-determination model for gender-affirming treatments provides a less burdensome experience for the patient (Johns Hopkins Center for Transgender and Gender Expansive Health, 2021), offers faster life-saving treatments in many cases (Allen et al., 2019; Grossman & D'augelli, 2006; Moody et al., 2015), and supports the right to personal autonomy in choosing care options without the involvement of a mental health professional. At the same time, it allows clinicians to gain a deeper understanding of transgender patients and deliver better care.
An essential component of self-determination practice is the principle of respect for patient autonomy and the belief that clinicians will work to promote patients' decisions about the course of their own lives and care (Cavanaugh et al., 2016).
Ethical Considerations for Self-Determination as a Care Model
The Principle of Autonomy and Human Rights
One of the core principles of healthcare is patient autonomy. Because the Standards of Care place an unnecessary burden on individuals seeking gender-affirming hormone or surgical treatment, the guidelines are sometimes considered paternalistic and a form of gatekeeping that actually restricts access to gender-affirming care (Cavanaugh et al., 2016). This violates that core principle.
The self-determination model offers more room for autonomy in determining what their healthcare looks like; the European Council for Human Rights advocates for:
effective and stigma-free access to trans-specific healthcare services, including psychological, endocrinological, and surgical procedures, without the requirement of a mental disorder diagnosis, in accordance with the World Health Organization's ICD-11
(Council of Europe - Commissioner for Human Rights, 2024)
The Gatekeeping Model Creates an Undesirable Power Dynamic Between Client and Provider.
In the current gatekeeping system, transgender individuals depend on a green light from multiple mental health professionals to begin gender-affirming care. This creates an undesirable incentive to lie to these providers to gain access to care, which comes at the expense of trust between patient and provider. This requirement thus negatively impacts the patient-provider relationship (Baker et al., 2023; Stroumsa et al., 2022; Deutsch, 2012; Murphy, 2016; Nelson, 2016; Davy et al., 2017; Schulz, 2017; van de Grift et al., 2024).
The consequences of this green-light requirement can also lead to patients doubting their own transgender identity, as well as resistance to the pathologization and the equation of mental disorders with being transgender. Participants in a recent study felt the need to censor themselves or perform a version of being transgender that they thought the provider expected; this process reduced their trust in providers (Stroumsa et al., 2022).
A recent small-scale retrospective study among Finnish transsexuals [transgender individuals] found that a majority of respondents lied to psychiatrists "to meet the psychiatrist's expectations and sought therapy on their own initiative [i.e., unsupervised cross-sex hormone therapy] when the psychiatrist denied or delayed it" (Pimenoff & Pfäfflin, 2011, p. 43). Surprisingly, these non-compliant patients achieved their treatment goals faster and had higher improvement scores in occupational, social, and psychological functioning than those who "regularly waited for the psychiatrist's assessment and formal recommendations." The researchers note that "the psychiatrist's role as a gatekeeper... has likely become obsolete."
Deutsch, 2012
In a self-determination system, the burden of gatekeeping is removed from the mental healthcare provider, allowing them to build a more trusting, supportive, and facilitating relationship with patients (Deutsch, 2012; Murphy, 2016; Nelson, 2016; Schwend, 2020).
Quality of Care
Evaluations of different care models for transgender care show similar ratios of regret and detransition, while the self-determination model shows higher satisfaction rates among clients. Where the self-determination model is applied, high levels of client satisfaction were observed, including among those referred for secondary mental health care (Cavanaugh et al., 2016; Spanos et al., 2020).
Given that care through the regular system in the Netherlands is inaccessible to many due to years-long waiting lists (van de Grift et al., 2024), the current model does not provide adequate care. A shortage of available experts and resources should not be an impediment to care (Rider, McMorris et al., 2019). Even when the provider may not feel competent to assess gender dysphoria, the self-determination model allows the provider and patient to collaboratively create a care plan (Cavanaugh et al., 2016).
Efficiency
Given the increasing number of transgender individuals seeking gender-affirming care and the pressure on gender clinics, using a self-determination model in primary care is a practical solution to shorten waiting lists (Cavanaugh et al., 2016; van de Grift et al., 2024).
This model is also significantly cheaper and reduces the burden on psychologists, giving them more time for patients who need more intensive guidance. The GGD Amsterdam treats its clients at one-tenth the cost of a university gender team and offers a wider range of healthcare services, requiring only one session with a provider before starting gender-affirming hormone therapy. Furthermore, a 2024 study highlighted that transgender individuals on waiting lists for care are more likely to suffer mentally and physically during the 1 to 3-year waiting period, resulting in frequently increased healthcare consumption by these individuals during that time (van de Grift et al., 2024).
The Gatekeeping Model
The Risks of the Gatekeeping Model
The gatekeeping model appears to be a safer option for some providers, requiring, out of an abundance of caution, that patients consult with psychologists, psychiatrists, gender team specialists, and endocrinologists before starting gender-affirming hormone therapy. However, this model carries significant risks that are not immediately apparent.
Dehumanization and Pathologization
One risk of the gatekeeping model is that it dehumanizes transgender individuals, distrusts them, and suppresses their autonomy, while pathologizing transgender identity. The gatekeeping model disregards a client's self-identification as transgender and instead places a psychiatrist as the sole authority, showing the patient that their self-knowledge is insufficient (Ashley, 2019). This model also positions being transgender as a mental illness that needs to be diagnosed and resolved, rather than as an embodied identity that encompasses multiple facets, including euphoria (Ashley, 2019).
There is no scientific evidence for the benefit of [referral letter] requirements
(Cavanaugh et. al. 2016, p.1151)
The requirement for [mental health screening] is based on expert consensus rather than studies linking referral letter requirements to positive outcomes. On the contrary, studies have shown no negative outcomes associated with the self-determination model.
(Ashley, 2019, p. 481)
[Patients] wanted a provider involved in power-sharing and shared decision-making, rather than making decisions for them or narrowing the range of options they could consider.
(Baker et. al. 2023 p. 3)
Pathologization carries a significant risk of dehumanizing the patient and can harm the patient-provider relationship (van de Grift et al., 2024). A recent study in Australia also showed that patients using a self-determination model were much more satisfied with their care than those who required a diagnosis before starting gender-affirming hormone therapy (Spanos et. al., 2020).
Centralization and Monopolization
Referring transgender and non-binary patients to specialized care inevitably leads to the centralization of that care, with all gender-diverse patients being referred to only a handful of specialized providers. Specialized gender teams at universities and smaller institutions have increased in recent years thanks to the efforts of the transgender quartermaster (Verkoulen, 2021), but are still too few to serve all gender-diverse patients without long waiting times (van de Grift et al., 2024).
The unfortunate consequence of this is a monopolization of care by specialist gender teams, trapping transgender and non-binary patients in specialized clinics instead of distributing care evenly across the country with the help of general practitioners and their expertise.
(...) the centralization and monopoly of trans-specific healthcare have caused serious challenges for trans individuals, including a lack of choice in providers, long waiting lists, and frequent travel.
(Council of Europe - Commissioner for Human Rights, 2024, p. 88)
Centralization of transgender care poses a serious societal risk because it prevents care from scaling up (van de Grift et al., 2024) and adapting to the increase in transgender youth seeking care. Several studies have shown that the percentage of young people identifying as gender-diverse has steadily increased over time (McKechnie et al., 2023; Meerwijk et al., 2017; Arcelus et al., 2015; van de Grift et al., 2024).
Increased Risk of Suffering
Increased suicidality among transgender and non-binary individuals has been extensively studied, and it has long been known that transgender individuals are much more likely to contemplate or attempt suicide during their lifetime (Kohnepoushi et al., 2023; Moody et al., 2015; Bauer et al., 2013).
However, data suggests that access to gender-affirming care is a protective factor for transgender individuals. A 2013 study of 433 transgender individuals in Ontario, Canada, showed that suicidality rates decreased in patients undergoing medical transition (Bauer et al., 2013). Other studies confirm this finding, noting that access to transition-related care can be life-saving for many transgender individuals.
Peach reported: ‘Initially, before transitioning and learning to accept who I am, gender identity certainly added to the list of reasons to commit suicide. Now that I am transitioning, it actually keeps me from suicide. I hated looking at myself in the mirror for 30 years. I love what I see now, so I am finally content.’
(Moody et al., 2015, p. 274)
Additionally, recent research shows that transgender individuals suffer immensely during their waiting period for gender-affirming care, sometimes leading to mental health conditions. A 2024 study among transgender individuals in the Netherlands showed that many experienced more gender-related stress while waiting for care, but also: Low self-esteem, suppression of their identity, feeling that their life was on hold, stress, worries, feelings of unimportance, frustration, loneliness, hopelessness, shame, and in some cases the inability to actively participate in their own lives (work, school, sports, social life) (van de Grift et al., 2024). The majority of these individuals rated the effect of waiting lists on their suffering as "very negative"; exact percentages varied by type of waiting list, but went up to 86.7% and averaged 57% (van de Grift et al., 2024).
Self-Medication
Another risk of the gatekeeping model is that gender-diverse individuals, when faced with long waiting times and other obstacles, may obtain gender-affirming hormone therapy through non-medical sources. The use of black market hormones or do-it-yourself (DIY) hormones is not uncommon among transgender individuals who cannot obtain hormonal prescriptions from providers and is well-documented (Clark et al., 2018; Stroumsa et al., 2020; Rotondi et al., 2013; Baker et al., 2023; van de Grift et al., 2024).
This carries significant risks for transgender individuals. DIY hormones may not be checked for content and quality, dosages may deviate from recommendations, access and use may be inconsistent, comorbidities may not be treated, laboratory results and monitoring may be missing or misinterpreted, and incorrect injection materials or techniques may be used, increasing the risk of infections or illness.
Unnecessary Caution: A Note on Detransition / Retransition
Many doctors believe that the gatekeeping model is necessary to ensure that transgender patients do not regret their decision to start gender-affirming hormone therapy (GAHT), especially since some changes from GAHT are permanent. However, research shows that detransition or regret is very rare. A 2012 study conducted in 12 clinics in the United States (1,944 patients) showed only a 0.8% prevalence of regret cases, and a 0.1% prevalence of transition reversal (Deutsch, 2012).
Transgender individuals rarely regret their decision to transition and do not make this decision lightly. With the appropriate self-determination model, which ensures that patients have all relevant information and are able to give informed consent, most transgender patients actually celebrate the changes they experience through GAHT.
The Self-Determination Model
An Example of a Process for Providing Self-Determination-Based Gender-Affirming Hormone Therapy
Introduction to the Self-Determination Model in Practice
In light of the risks, dangers, and harm caused by the Gatekeeping Model, another model emerged, based on self-determination. This model is recognized by the WPATH Standards of Care and is successfully applied in GGD trans clinics in the Netherlands, as well as in clinics in the United States and Australia.
When we say this model is based on self-determination, we mean the following:
Self-Determination in Daily Life
The right of a person to decide on the form of life they wish to lead. Gender self-determination means that individuals have the right to define, express, and embody their gender identity in the way they deem appropriate.
Self-Determination in Medical Practice
The principle of gender self-determination defines the ethical obligations of healthcare providers. Given the impact of gender-affirming care on one's ability to express, embody, and live their gender identity in daily life, a presumed right to gender-affirming care for transgender individuals seems essential to support the principle of gender self-determination. Transgender patients are, in this sense, in a unique situation that expands the traditional scope of medical autonomy. This is perhaps best expressed in the European Court of Human Rights' statement in the case of Van Kück v. Germany, which explained that
the burden placed on an individual to prove the medical necessity of a treatment, including irreversible surgeries, in the domain of one of the most intimate matters of private life, appears disproportionate.
The self-determination model shifts the balance from "the transgender person must prove to the doctor that they are transgender so the doctor can decide whether or not they receive access to life-saving care" to "the transgender person has the right to determine which care best helps them live their gender identity." The decision rests with them, with guidance and advice from their healthcare provider. This means that the doctor's expertise and judgment are considered in determining the best available treatment, in collaboration between doctor and patient, as is customary in care. It is important to note that these forms of care generally do not require input from a psychiatrist. Mental health care can, of course, be helpful in navigating the changes during transition. The self-determination model separates this care from gender evaluations (Cavanaugh et al., 2016).
According to the self-determination model, a transgender person does not need to prove suffering about their identity to access desired health services; instead, they must 'have the cognitive capacity to make an informed decision about their care,' including expressing an understanding of the risks, benefits, and information needed to make an informed decision about proceeding with medical services related to transition.
Schwend, A. S. (2020). Trans health care from a depathologization and human rights perspective. Public Health Rev 41(3).
The History of Using the Self-Determination Model
The self-determination model has now been used for over ten years in the Netherlands by GGD Amsterdam / Trans United clinic, with support from the gender team of Amsterdam UMC, as well as by a limited number of general practitioners and recently the GGD Utrecht / Coloured Qollective gender clinic.
The self-determination model has been successfully applied for many years in various parts of the world, including the Netherlands, Australia, Argentina, Canada, and the United States (Schwend, 2020; Drescher et al., 2012; Davy et al., 2017).
The model was first introduced by Fenway Health (a primary care health center in Boston, Massachusetts, USA), which began using the model in 2007 for their transgender clients seeking gender-affirming hormone therapy. Their approach is based on "a philosophy of accessible, patient-centered care that views gender affirmation as a routine part of primary care, rather than a psychological or psychiatric condition requiring treatment" (Reisner et al., 2015).
In 2009, the self-determination movement gained international recognition with the International Campaign to Stop Transgender Pathologization, which lobbied in subsequent years for the removal of "Gender Identity Disorder" from the ICD-11. The 2011 ICD manual was published with the term "Gender Dysphoria" replacing "Gender Identity Disorder," and with the diagnosis moved from the "Mental and Behavioral Disorders" category to a new section called "Conditions Related to Sexual Health" (Schwend, 2020).
In 2012, Argentina introduced a Gender Identity Law that, among other things, established the "right to state-funded trans healthcare within a self-determination model" (Davy et al., 2017). Australia and Canada, along with other countries, have also successfully implemented the self-determination model (AUSPATH, 2022 & Sherborne Health, 2021).
Research on the use of this model shows that clients are more satisfied with their care and transition outcomes. Despite these successes and long-term use, the model has not yet been incorporated into domestic care standards. Trans In Eigen Hand, progressive healthcare providers, and other grassroots organizations continue to fight for its implementation in care standards.
Vision for Self-Determination
The self-determination method for transgender care restores the client's right to determine how they can best live their gender identity, while empowering the healthcare provider to use their expertise to support the client in making the best possible decision. Abolishing the gatekeeping model reduces pathologization and has the potential to restore the fractured trust between the transgender community and their healthcare providers.
In the Guideline for Support in Gender-Affirming Hormone Therapy in Primary Care, we describe step-by-step how medical professionals can proceed to provide the client with the information needed to make informed decisions about their care, and to assess the risks and the client's capacity to make a well-informed decision. This assessment should be concise and include only relevant questions regarding the possible care pathways.
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