The informed consent model is adequate for gender-affirming treatment: issues related with mental health assessment in the United States
Year: 2023
Type: article
Abstract: Informed consent is the practice of physicians disclosing enough information to the patient to make a health care decision. Best practice for informed consent typically involves discussion of benefits and side effects of said decision, as well as the reasonable alternatives to treatment. However, the amount of information disclosed may vary from physician to physician.1 While informed consent within regular medical care is often implicitly practiced vs explicitly executed, it is the ethical and legal basis for most patient care decisions. This model allows for patients to have a more involved role in their care and treatment plans, while respecting the 4 pillars of medical ethics: respect for autonomy, nonmaleficence, beneficence, and justice.2,3 In terms of transgender health, it has been well documented that transgender individuals face difficulty when accessing gender-affirming care, such as gender-affirming hormone therapy (GAHT) and gender-affirming surgery, as well as general health care.3,4 In the United States, the most common barriers to care include but are not limited to the following: lack of health insurance coverage, discrimination and assault, inadequate fund of knowledge by health care providers, and cost.4 Furthermore, there is what some consider “gatekeeping” by medical professionals, which makes accessing gender-affirming treatments difficult. Unfortunately, this practice continues to be the standard of care, despite research showing that an “informed consent” model may be more beneficial to optimal outcomes, such as increased access to health care and therefore better mental health outcomes, as well as greater patient satisfaction with their health and physicians due to a more collaborative decision-making process.5-7 This article explores the pitfalls of the current standards-of-care model while addressing the nuances and challenges of the informed consent model. Furthermore, the informed consent model in health care, which is applicable to all patients, should not exclude transgender care and individuals. The World Professional Association for Transgender Health (WPATH) is a multidisciplinary organization that seeks to further the understanding of transgender health globally to promote quality, evidence-based care and research for transgender and gender-nonconforming individuals. To these ends, the WPATH publishes recommendations and guidelines as the Standards of Care for the Health of Transgender and Gender Diverse People (SOC), designed to fit various health care models across different countries. The first document was published in 1979, and the most recent iteration of the SOC is version 8, released in September 2022. The original SOC from 1979 required psychiatrists and psychologists to determine the presence of a patient’s dysphoria “independent of the patient’s verbal claim” and referred to a patient’s verbal reports as “possibly unreliable or invalid sources of information.”6,8 Throughout the years, the SOC has changed, acknowledging the need for flexibility and application of standards; however, even in 2001, when version 6 of the SOC was published, it prescribed a standard period of 3 to 6 months of psychotherapy and/or a period of “real-life experience”—that is, living full-time as one’s identified gender without any medical intervention.9 A mental health assessment was also deemed necessary per the SOC to diagnose and manage gender dysphoria.9 With this, patients were required to obtain referral letters from mental health professionals documenting their eligibility and readiness for gender-affirming medical treatments; one letter was required prior to GAHT or chest surgery, and 2 letters were required prior to genital surgery.9 In many ways, transgender individuals were forced to prove their gender dysphoria to physicians before gaining access to life-saving gender-affirming care. The current SOC, released in September 2022, dictates that for those seeking GAHT, “only one letter of assessment from a health care professional who has competencies in the assessment of transgender and gender diverse people is needed [if required],” finally alluding to the fact that mental professionals are not and should not be the only qualified health care providers who can prescribe this letter.10 The purpose of the assessment is to ascertain “gender incongruence is marked and sustained; and [individual] meets diagnostic criteria for gender incongruence prior to [GAHT] in regions where a diagnosis is necessary to access health care.”10 While there is acknowledgment of the informed consent model in the SOC, there maintains a strong emphasis in the United States on the need for evaluation before commencement of gender-affirming therapies, and almost every large institution in the country still abides by the standard that to access gender-affirming care, one must have a diagnosis of gender dysphoria. This is not necessarily the case in other countries. In Australia, a study was done examining the 2 most common approaches to assess a patient prior to GAHT: assessment by a mental health provider and approval vs an informed consent model with a primary care physician through self-appointment.7 The authors found that those who went through the informed consent model not only started GAHT sooner than the group referred to a mental health provider but also reported higher satisfaction with their overall care.7 While it is important to acknowledge the significant changes throughout different versions of the SOC, it must be acknowledged that at least in the United States, institutions have not necessarily updated their practices and policies to adhere to such guidelines. SOC version 7 was published in 2012, and with version 8 coming 10 years later in 2022, we have yet to see the impacts of such changes. These SOC have been considered by some as the gatekeeping model for access to gender-affirming care. Because the work is often put on the individual to seek out clinicians—typically, mental health providers—to obtain the appropriate approvals and letters, it makes the process of accessing gender-affirming care much more difficult. Furthermore, in the United States, nearly 1 in 5 (18%) of those who discussed their gender identity with a professional—or 13% of all respondents—reported that the professional tried to stop them from being transgender.4 While many understand that being transgender is no longer considered a psychiatric diagnosis, there is always the possibility that a US health care provider may challenge or dismiss one’s transgender identity, simply due to the relationship that transgender patients have historically had with mental health providers and the Diagnostic and Statistical Manual of Mental Disorders. While these standards are based on the 4 pillars of medical ethics to ensure that gender-affirming treatments are not accessed heedlessly, there is a level of apprehension in the medical community. Transgender health is rarely mentioned in medical schools’ curriculums, let alone taught in a clinical setting, leading many practitioners to more likely consider the risks of gender-affirming treatment more heavily than the benefits.6,11 Previous research on long-term outcomes from GAHT and gender-affirming surgery have been limited, but more recent studies have shown that hormone therapy and surgery are relatively safe and have significant potential to improve mental health and psychosocial functioning in transgender individuals.5,6,12-15 One study based in Germany examined the satisfaction rate of urologic surgery 5 years later in transgender women with regard to functional outcome and outward appearance as a woman.13 Of 119 respondents, 65.7% reported that they were satisfied with their life at that time.13 Another German-based study investigated the long-term effects of transitioning and gender-affirming therapies on transgender patients 10 to 24 years later.14 Overall the findings showed decreased gender dysphoria, mental health problems, and interpersonal difficulties and an increased satisfaction with life.14 Despite this research, many health care professionals are wary of the unknown and tend to overfocus their risk assessment on the future and undervalue the known benefits of gender-affirming treatment in the present. The informed consent model for gender-affirming care has been proposed in several transgender health care guideline publications and has been recently advocated by more patients themselves.16,17 While informed consent is used on a regular basis for most health care decisions by patients, transgender individuals are not often given this opportunity when requesting gender-affirming care. An informed consent model seeks to give more power and autonomy to the patient in choosing how one would like to pursue care. This model should also apply for those who identify as transgender and/or gender expansive regardless of a diagnosis of gender dysphoria and without the requirement of external validation from a mental health care provider. By discussing the benefits and risks of a possible treatment with the patient by a primary care/specialty physician, the individual can decide if one has adequate information to make an informed health care decision or if one would like to speak further with a mental health professional. At the center of this model is the idea that the patient is the best person to make medical decisions because of one’s lived experiences and perspectives. Transgender patients are therefore as mentally competent as other patients to make their own decisions regarding any type of medical care, without the need for a third person or institution.5-7,16,17 No one knows the patients better than the patients themselves, albeit they have decision-making capacity. With this in mind, under the informed consent model, a discussion with a specialist exploring a patient’s wants and needs for gender-affirming treatment is sufficient.5-7,17 A thorough discussion with the involved providers would include the impact of gender dysphoria on the patient and the psychosocial factors that predispose, precipitate, and perpetuate the needed treatment, as well as current protective factors or coping mechanisms that an individual might have.18,19 It could be argued that any health care professional, regardless of specialty, should be able to hold this conversation with a transgender patient, especially one directly involved in gender-affirming care, but in reality, this is unfortunately not always the case. For this reason, current health care practice includes the mental health care professional, who is expected to have this conversation. However, the reliance on the psychiatrists, psychologists, and therapists to determine the eligibility and readiness for treatment perpetuates the message that neither the patient nor the involved clinician ultimately providing treatment is equipped to have a satisfactory provider-patient relationship.5,6 This informed consent health care model, which is currently not followed for gender-affirming care but is best practice for most other health care decisions, should be considered. For the transgender–health care interaction, it should be reframed as a type of shared decision-making model.20 Just as with other procedures—such as colorectal cancer screening with a colonoscopy, hysterectomy, or even cosmetic surgery—patients are placed at the center of the decision-making process without reliance on mental health care professionals for screening.21-23 While capacity to make any medical decision needs to be determined in all health care cases, transgender patients are one of very few populations that needs eligibility—not capacity—specifically determined by a mental health care provider.17 This perpetuates the narrative that being transgender and/or seeking gender-affirming care is a mental health disorder. According to the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, gender dysphoria is the “clinically significant distress or impairment related to gender incongruence,” but this diagnosis can lie on a spectrum given that gender identity itself also lies on a continuum.24 Additionally, not all transgender people have gender dysphoria; that is, it does not cause them severe distress or impairment.6,24 One article by Florence Ashley, based in Canada, captures this idea well: “Gender dysphoria assessments misrepresent trans embodiment and devalue the experiences of those who wish to alter their bodies for reasons other than gender dysphoria. Those who want to take [hormone replacement therapy] because of gender euphoria . . . must lie about their fundamental experience of gender or be refused the gendered body they want—something cisgender people almost invariably get to have.”17 This perspective of gender euphoria or transgender joy is often missed in clinical settings and discussions on standards of care. While research repeatedly shows that transgender people face higher rates of suicide, discrimination, substance abuse, and homelessness, there is evidence that being transgender is a joyful experience—one that, individuals report, allows them to have a meaningful life.5,17,25-27 Specifically, one study interviewed 40 transgender people in the midwestern United States and asked what they found “joyful about being trans.”27 Narratives from several respondents included perspectives of increased body positivity after coming out and prior to gender-affirming treatment. These perspectives “counter the trans-normative narrative that mandates that access to medical interventions may be granted only if a trans person feels disgusted with their bodies.”27 There appears to be a disconnect for many physicians in seeing the joys and benefits that gender-affirming care can have on a person, and until more studies and interviews are conducted across the world, this will continue to be the case.26-28 Along the same lines of “up-playing” gender dysphoria are questions about the gender binary itself. Gender is a social construct created and reinforced by social norms in the way that we interact with each other, dress, and speak, among other things. When individuals seek a mental health care professional for a letter deeming them to be eligible for gender-affirming treatment, they may feel as though they must go from one gender binary to another, when there is the possibility that they identify with neither and are either outside the binary or both. When transgender patients’ access to health care is at stake, those persons might choose to place themselves within one of the binaries to feel more assured that they meet eligibility criteria or, in the eyes of the evaluator, are deemed “adequately distressed” for the care that they need.5,6,17,27 There is more acknowledgment in the new version of the SOC that the informed consent model is compatible with the standards, given that the provider obtaining informed consent has the ability to lay out the risk and benefits to hormone therapy and other management interventions.5,6,10 Asking for mental health–specific assistance should be the decision of the individual, not a requirement. In 2015, the US National Transgender Survey reported that only 58% of respondents have ever received counseling or therapy.4 Therapy is good practice beyond seeking validation from a mental health professional for one’s gender dysphoria, and while a mental health practitioner in a gatekeeping role has been met with apprehension and disagreement, seeking mental health professionals as a supportive measure for one’s transition is much more widely accepted. Ultimately, patient autonomy should be respected, and mental health therapy should be up to the individual. That being said, there are several situations in which evaluation by a mental health professional may be necessary prior to receiving gender-affirming treatments, such as determining capacity in the midst of a mental health crisis or psychotic episode. Additionally, the issue of detransitioning continues to be debated within the health care community. Detransitioning refers to living as one’s sex assigned at birth after having transitioned to living as another gender identity.29 A 2021 study conducted a secondary analysis on data from the 2015 US Transgender Survey to determine reasons for detransitioning among transgender individuals. Results showed that 82.5% of those who detransitioned had at least 1 external driving factor, such as family and societal stigma, and 15.9% of respondents who detransitioned had at least 1 internal driving factor, such as fluctuations or uncertainty about gender identity.29 More longitudinal studies are needed to elucidate the role of psychopathology and mental health in these complex processes and situations. Transgender patients seeking gender-affirming treatment in the United States are one of the only populations that requires clearance from a mental health professional such that they are eligible to receive the care that they need and deserve—care that may be lifesaving treatment. While there are certain circumstances in which a mental health assessment may be necessary, such as determining capacity, this barrier to health care is a by-product of the antiquated standards-of-care model, which deems mental health care professionals to be the gatekeepers and “experts” on transgender health. While the standards of care have been updated and have recently become more inclusive of nonbinary individuals and limited the need for a complete mental health assessment prior to gender-affirming treatment, many practices in the United States have yet to adjust to these standards. However, physicians who are conducting the treatments should be able to have an in-depth conversation with the patient and discuss the risks and the benefits of intervention; this is the basis for the informed consent model. Through this model, patients and clinicians together can develop a plan that is both affirming and safe and puts the focus on health care providers to be better educated in their understanding of transgender medicine. None declared. Conflicts of interest: None declared.
Source: The Journal of Sexual Medicine
Authors: Taylor Chiang, Gloria A Bachmann
Institution: Rutgers, The State University of New Jersey
Language: English
Subfield: Social Psychology
Field: Psychology
Domain: Social Sciences
Open Access status: hybrid
Estimated APC paid: $3,250
OpenAlex ID: W4367555549