Transgender patients and informed consent: Who decides when transition treatment is appropriate?

Should Trans People Need a Doctor's Permission to Medically Transition?

Should Trans People Need a Doctor's Permission to Medically Transition?

Outward
Expanding the LGBTQ Conversation
March 11 2016 4:18 PM

Gatekeepers vs. Informed Consent: Who Decides When a Trans Person Can Medically Transition?

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Gatekeeper or guide?

Wavebreak Media/Thinkstock

Wavebreak Media
Wavebreak Media

While not every transgender person seeks to transition physically—whether through hormone therapy or other means like surgery—when one does, who should be allowed to make the decision? Is it a clear matter of personal choice? Or should doctors or therapists have a say?

In recent decades, transgender patients were expected to undergo extensive talk therapy in order to access medical interventions. Under this approach, also known as the “gatekeeper” model, the ultimate decision about who was or was not a candidate for treatments ranging from hormones to surgery rested with the therapist. More recently, transgender advocates have argued against what they see as red tape, favoring a system of “informed consent” in which, following appropriate education and advisement about the treatment in question, the ultimate decision regarding treatment choice rests with the patient alone. The informed consent model has been adopted at many centers that provide hormone replacement therapy (HRT), including the Planned Parenthood locations that offer it. Still, other providers continue to use the older model, requiring patients to produce a letter from a therapist regarding their psychological fitness before they can be evaluated medically as candidates for treatment.

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This divide among providers mirrors a tension within the larger trans healthcare advocacy community. On one side there are those who wish to de-medicalize the experience of transgender individuals to the greatest possible extent—these advocates generally see the role of medical professionals as providing the requested treatment to the consumer and staying out of the way. Others see medical practitioners as playing an important role in helping to prepare trans patients for the consequences of their decisions, guiding them away from uninformed choices or spur-of-the-moment impulses. While both sides ultimately want trans folks to get the care they need, the question of how much intervention is helpful is very much open.

From the perspective of advocates for transgender rights—many of whom have themselves pursued HRT and/or other medical interventions to help their bodies conform to their inner self-conception—setting up gatekeepers between transgender patients and the treatments they feel they need is a problem. “To me, a gatekeeper in the traditional sense is kind of like a check box of things you need to say, or think, or be, in order to be what they think is appropriate for someone to start hormone therapy, or have surgery, or whatever,” explained Marti Abernathey, a trans woman and the founder of Trans Advocate, a news and commentary website. Abernathey went on to describe the narrow stereotypes that medical professionals once expected trans women to conform to in order to merit a medical transition: They would need to be sexually attracted to men, for example, and they should be very feminine. Informed consent sidesteps these kinds of biases.

“Informed consent is a medical provider laying out your risks and benefits, and the most current information they have about those risks and benefits, and giving you the choice about what to do with your own body. For me this is a basic human right, a matter of bodily autonomy,” Abernathey said.

Over the past few decades, the strictness of the standards that medical providers use to determine suitability for treatments such as HRT have been relaxed substantially. WPATH, the World Professional Association for Transgender Health, an organization of medical professionals involved in transgender care, publishes and promulgates the Standards of Care and Ethical Guidelines (SOC), a document which is widely used by medical professionals to inform and guide their practice with transgender patients. I spoke with Dr. Jamison Green, the current president of WPATH, about the why providers even need professional standards and the evolving role of informed consent in ethical practice.

Informed consent is a part of every step of the way in treatment of transgender patients. The SOC don’t exist to gatekeep. But if you want cross-sex hormones and/or surgery, and if you don’t have a body that is considered ill, that is considered problematic. You can’t get medical treatments without a diagnosis, and you certainly can’t get insurance to cover it. The system we have says that you need to have a diagnosis in order to get treatment.
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WPATH was once known as the Harry Benjamin International Gender Dysphoria Association. Under that name the Standards of Care were stricter, more concerned with guiding practitioners through the process of deciding who was “trans enough” for treatment to be indicated. Dr. Green pointed to the progress that had been made toward putting patients in the driver's seat, though with a caveat regarding surgery:

In the past, the belief was that people couldn’t make these decisions on their own, and the mental health screening could be brutal. It could go 2 or 3 years before you’d have any access to [hormone] therapy. The SOC acknowledge that it’s unethical to try to change someone’s gender identity, and they don’t require a year or more of therapy before you can get hormones—one or two visits is fine, as long as the therapist you’re seeing is comfortable. This is a complex and difficult thing, and if someone wants surgery it can be important that they slow down just a bit and think about what they’re doing. And, surgeons don’t feel qualified to evaluate who will be a good candidate for surgery—they want a therapist to do that.

Dr. Green, who is himself transgender, doesn’t believe that having ethical standards for providers to follow is incompatible with an informed consent model of treatment. It’s just part of achieving a system of care that meets the needs of patients and providers alike. Since the transgender community includes many individuals with mental health issues such as depression, as well as minor children who are not legally able to consent to medical procedures on their own, some version of the SOC will likely be needed for the foreseeable future.

Even so, the consensus of medical providers who work with transgender patients has shifted a long way in favor of self-determination, and it may well shift further. There do, however, remain questions of emphasis. Although it’s rare for patients to regret transitioning, it can and does happen. There are also transgender patients who do not regret transitioning, but who come to regret the specific decisions that they made, the speed of the process, which providers they trusted, or how they dealt with their transition emotionally. For advocates like Abernathy, the potential for regret is not as important as the principle of access and control over one’s body—she believes that the existence of a few people who regret making a decision shouldn’t prevent adults from freely making the same decision as long as they’re fully informed about the potential risks and benefits.

Professionals like Dr. Green and the members of his organization have a different concern: making sure that patients and providers are protected from negative outcomes that could have been avoided. 

Finding the right balance won’t be easy. Although it’s true that every treatment requires a diagnosis, in most cases patients are unlikely to encounter a provider who is skeptical about their self-reported symptoms. A man experiencing erectile dysfunction, for instance, does not need to undergo months of therapy or provide proof of his lack of function in order to get a script for Viagra. Although the wishes of the patient have gradually been given more weight in the SOC, it’s not clear whether medicine will come to see being transgender as straightforward, like having erectile dysfunction, or complicated, like having a psychological condition. For transgender individuals, the desire to avoid the stigma of mental illness can make this subject very emotionally fraught. But in the end, the risk that certain people may impulsively or erroneously embark on treatments with permanent effects must be evaluated rationally, and weighed against the potential harm to patients for whom the requirements are onerous or whose treatment is needlessly delayed.

Evan Urquhart (formerly Vanessa Vitiello Urquhart) is working to improve comments on Slate and is a regular contributor to Outward.