'Oppressive' Diagnostic Labels: An Ethical Dilemma

For those in a rush, here is the dilemma. Without a diagnosis, payment by insurance companies and the government is unavailable; but once there is a diagnosis, the wording of the underlying medical problem, which may be “oppressive” to the patient, lives on. We have seen this in the debate around medicalizing obesity so that the overweight might be financially aided in obtaining surgical and medical intervention, like semaglutide - medication in Ozempic and Wagovy. Choosing a trendier diagnosis, the authors address the oppression surrounding the latest term, gender incongruence. [1]

They begin by recounting the changing names and understanding for the diagnostic term that is now gender incongruence - where an individual's deeply felt sense of being male, female, or something outside the binary concept of gender differs from the gender assigned at birth is based on physical characteristics such as genitalia.

• 1968 – “transvestism under the parent category of sexual deviations.”
• 1975 – “Transsexualism,” again a sexual deviation, further constrained by requiring an individual to “remain congruent with the sex they were assigned at birth or wholly transition to the “opposite” gender.”
• 1979 – the first use of the term gender dysphoria [2]
• During the ensuing years, psychotherapy yields its hold over the diagnostic category
• 2013 – the term gender dysphoria returns to psychiatry’s standard, the Diagnostic and Statistical Manual of Mental Disorders, “in an effort to depathologize its terminology.”
• 2019 – the WHO, keeper of the International Classification of Disease (ICD) codes, “to further depathologize gender diversity and to reduce barriers to gender-affirming care and allow for increased flexibility in treatment options,” utilizes gender incongruence and moves the condition from a mental disorder to “Conditions Related to Sexual Health.”

An ethical dilemma - “the existence of a diagnosis at all can be seen as controversial.”

The authors begin by considering the beneficial role of a diagnosis. In addition to validating an individual’s experience, which is often critical for diseases with no clear-cut, objective diagnostic findings, like Long COVID or chronic fatigue, a diagnosis opens up potential reimbursement for care. A diagnostic code also allows for tracking outcomes, although given the plethora of diagnostic approaches, this might not be as helpful as it will mix the oranges in with the apples. Over time, “gender diversity, like pregnancy, could come to be understood as a condition that individuals can experience but that is not a disorder or illness.” 

There are some downsides making the “diagnostic label oppressive.” If indeed a diagnosis opens the door to reimbursement, then some patients may convey the diagnostic criteria, what the doctor "needs to hear," rather than their real feelings – a version of teaching to the test. In addition to promoting a false narrative in the doctor-patient relationship, all that inaccurate diagnostic coding will be absorbed by the healthcare data systems; with the incursion of AI’s opaque algorithms, it could well become garbage in, garbage out on steroids.

Given that transgender and “gender diverse individuals” are current political and media virtue signals, it is unlikely, as the authors note, that any diagnostic term will be destigmatized in the near term. With the concerns about data privacy and nearly 60 million health records breached in 2022, being “outed” is a potential but real harm.

The authors make several suggestions to physicians. First, in enhancing patient-centered care, we might ask the patient whether the diagnosis should be entered into the medical record. They suggest that other alternative diagnoses could be entered, including depression, anxiety, or “an adjustment disorder.” Of course, those too, might be too stigmatizing. While reducing harm to the individual, this “falsification” of the health record, especially those that will be ingested by unsupervised computer programs, may well generate damage to populations.

Second, physicians should serve as patient advocates with commercial or governmental payors to obtain reimbursement for their intended treatment plan. According to an AMA survey, prior authorization already takes up two business days weekly among physicians. Is this a real option, given the problems already contributing to physicians spending more time with computers and phone calls than patient care?

Finally, from what would seem a practical point of view, “clinicians can promote a more accepting culture by using the newest terminology that seeks to destigmatize and depathologize transgender and gender diverse identities.”

Of course, the authors have just spent all those paragraphs explaining why any terminology might be stigmatizing, so there are no magical phrases. As with all ethical dilemmas, there is no one answer; there is a balanced one, individualized for every patient. Unfortunately, as patient “throughput” becomes the metric of the administrators practicing Taylorism [3], finding that balance must somehow be crammed into the 15-minute office visit. Good luck with that.

[1] To put this problem in context, according to the best CDC estimates, this condition impacts 1.4% of 13-to-17-year-olds and 1.3% between 18 and 24. Adult percentages are estimated at 0.5%. For comparison, Harvard estimates adult obesity at 36%.

[2] It was introduced by “the Harry Benjamin International Gender Dysphoria Association, later known as the World Professional Association for Transgender Health,” in their standards of care. 

[3] Taylorism is a management philosophy and system of industrial organization developed by Frederick Winslow Taylor - the father of scientific management. Taylorism aims to increase productivity and efficiency in the workplace by applying “scientific principles” to management and labor processes.

Source: What the Past Suggests About When a Diagnostic Label Is Oppressive JAMA Journal of Ethics DOI: 10.1001/amajethics.2023.446