Careful Assessment is Not Happening

This recent article highlights a phenomenon that many concerned about the teen trans trend are seeing regularly – the extensive screening that many in the public believe happens before a young person is referred for hormones or surgery isn’t happening. According to the article, the parents called several therapists looking for someone who could help their newly gender dysphoric daughter explore and manage these feelings.

“Every therapist we spoke with – and we spoke with quite a few – told us that if a teen says they are trans, then they are, and the parents’ job is to affirm and help them transition. There was no therapist who would say to Abby, ‘This is not my experience of you.’  No therapist was interested in exploring the possibility that something other than being born into the wrong body could be operating here.”

Very similar accounts can be found on the blog 4thwavenow.

Like many who read this blog, I phoned gender therapists during the weeks after her announcement that she was trans. Without even meeting my child in the flesh, all four of these therapists talked to me like this trans thing was a done deal. I wrote about one of those conversations here. One very friendly therapist, who identifies as FTM and whose website stressed “his” commitment to “informed consent,” assured me that there was no need for my daughter to first experience a sexual or romantic relationship before deciding whether she was trans. “Most of the young people just skip that step now,” the therapist said.

When I speak of my concern about this trend to those unfamiliar with this issue, one of the predictable responses is that my fears must be misplaced because extensive therapy is required before any treatment can begin. There is no need to worry that a young person might undertake permanent, drastic alterations to his or her body, because anyone who doesn’t really need this treatment will be identified by professionals.

Unfortunately, this is not always the case.

This article in Slate describes the shift away from gatekeeping to informed consent. Even gender clinics that focus on children and youth such as Mazzoni operate under an informed consent model. If the child or teen declares themselves trans and consents to treatment along with the parents, that is all that is needed for treatment.

 

Here is an example of a consent form of testosterone therapy.

One of the most striking findings of the detransitioner survey conducted by Cari Stella is that 65% of those who medically transitioned had no therapy at all.  The pattern appears to be the same in the US and the UK. Screening is minimal to non-existent. The model is affirmation and informed consent. If you say you need this treatment, your healthcare provider will not stand in your way.

A Reddit user posted about their experience at a gender clinic. This user was approximately 19 years old when they sought treatment. This user was pleased with the lack of gatekeeping they experienced.

Dr. Timmins was unconcerned about the patient’s history of self-harm, and was careful not to question the patient’s motivation. From this account, it does not appear that Dr. Timmins explored the patient’s mental health history very deeply.

He did offer the helpful suggestion of freezing eggs, since testosterone can affect fertility. One would think that, given the acknowledged reality of severe side effects of treatment, it would be advisable to assess and counsel more carefully, but this account clearly indicates that did not happen.

Instead, Dr. Timmins had other advice:

The doctor recommends getting lots of visible tattoos, to make sure the patient isn’t mistaken for a 12 year old boy.  Stay away from the arm, though. You might need that skin for phalloplasty.

Taking a look at some of the poster’s other comments elsewhere on Reddit, we learn that they have a history of sexual trauma, abuse, depersonalization and derealization, dissociation, substance abuse, and self-harm.

It would seem to make sense that a history of any one of these issues might make a health care provider want to assess and counsel thoroughly to make sure that the desire to transition was not a maladaptive coping mechanism. But these kinds of considerations don’t seem to apply in transgender medicine.

In the US, Dr. Johanna Olson Kennedy is one of the leading pediatricians working with trans identified youth. She is explicitly against any kind of gatekeeping, as she made clear recently on the WPATH Facebook page.

I would point out that gatekeeping for serious medical intervention is indicated not because trans people are mentally ill, but because it is standard practice in medicine to evaluate the appropriateness of any treatment before prescribing it, especially if that treatment has a potential for adverse consequences. Any parent knows that a child’s self-diagnosis of an ear infection is unlikely to result in a prescription for antibiotics. Responsible physicians will take the time to examine the patient to see if such treatment is really indicated. Wouldn’t this seem even more necessary when the treatments are associated with serious side effects such as loss of fertility or liver damage?

Dr. Olson Kennedy appears unconcerned about potential regrets. For those who change their minds later, bodily changes and possible sterility will have all been part of their “gender journey.”

Which brings me to my final point. Our Reddit poster contends that they are happier now that they are taking testosterone, and that they are certain this is the right course. Even if one transitions for the “wrong” reason, where is the harm? If this is a treatment pathway that really helps some people, why shouldn’t we make it available to them?

Because we have no idea what the long-term effects of being on cross sex hormones will be. Because we have sufficient reason to be concerned that there could be serious adverse effects. Because if someone transitions as a maladaptive way of coping with trauma, the time spent transitioning may be time lost to healing. Because there are certainly ways of addressing dysphoria that are less risky. 

For those of you coming to this issue for the first time, it simply isn’t the case that young people are being carefully evaluated before being put on medications that are being used off-label and have not been studied for their safety long-term.

Transgender Children — a Risk Management and Ethical Perspective

The author is an ex-Risk Manager for a U.K. Mental Health Trust , not a doctor or psychologist.  Views here reflect the author’s understanding of this issue from a Risk Management and Allied Health perspective.

I am concerned at the perceived lack of clarity, ethics and judgement regarding assessment, diagnosis and treatment protocols for transgender people, especially children.

Terminology & assessment criteria: There is no agreed, organic, definitive test for Gender Dysphoria – the feeling that your sex assigned at birth and gender identity do not match. DSM V says that a patient can have a diagnosis of GD if the distress caused by the feeling that they are in the wrong sexed body for their I.D. is ‘consistent, insistent and persistent’ in children and if it carries on over 6 months for adults. Gender is defined as the social norms accepted for sex – male/female according to culture. Yet we hear there are multiple genders, not just ‘man/woman’ including ‘gender-fluid’ and ‘agender’- by definition not consistent, insistent and persistent. There is research to suggest that many gender non-conforming children grow out of the feeling that they are the opposite gender to their body by adolescence. I would like to add, from a professional point of view, that the feeling of ‘being in the wrong body’ for one’s sex must be especially difficult to assess when it is applied to babies and toddlers who do not yet have an understanding of objects, words and language.

Differential diagnosis: In order to be ethical and for treatments to work, clinicians must be able to establish the nature of a disability or health problem, including a mental health problem. They must be able to discount other factors including for example, social contagion, emotional trauma, schizophrenia, body dysmorphia associated with sensory difficulties, Autism Spectrum Disorder, effects of medication, brain injury etc. This does not appear to be happening in the case of people who think they may be transgender. We seem to be relying on self-diagnosis for this group, especially regarding case histories coming from the U.S.  We also need to look at the qualifications, skill-set and autonomy of specialist gender professionals who are making the diagnosis, to ensure consistency and efficacy. I am concerned that diagnosis is being made on the basis of one or two visits to counsellors who are then able to confirm distribution of medication which could permanently affect patients e.g. Testosterone.

Medical ethics, Clinical Governance, Risk Assessment, Informed Consent.

Medical ethics has four main principles:

  • Autonomy

Requires that the patient have autonomy of thought, intention, and action when making decisions regarding health care procedures. Therefore, the decision-making process must be free of coercion or coaxing.  In order for a patient to make a fully informed decision, she/he must understand all risks and benefits of the procedure and the likelihood of success.

  • Justice

The idea that the burdens and benefits of new or experimental treatments must be distributed equally among all groups in society. Requires that procedures uphold the spirit of existing laws and are fair to all players involved.

  • Beneficence
    Requires that the procedure be provided with the intent of doing good for the patient involved.
  • Non-maleficence
    Requires that a procedure does not harm the patient involved or others in society.

These appear to be breached in some cases:

Autonomy:

    1. The decision making process can be demonstrably proven NOT to be free of coercion or coaxing, if the choice is being given to parents of possibly transgender children, ‘Would you rather have a dead son, or a transgender daughter?’ as has been reported.
    2. Fully informed decision: this ties into another medical principle of informed consent. You cannot give informed consent if you have not been given full information and you do not understand what you are consenting to. Basically, what are the outcomes of social transitioning on children/adults? What are the outcomes and possible side-effects of puberty blockers e.g. Lupron? What are the outcomes of adult surgery? Does it relieve psychological pain? Where are the clinical trials to show effectiveness/non-effectiveness in short-term and long-term follow-up studies?
  • As medical, allied health and social work professionals, are we acting effectively and ethically when we are advocating a course of action, are we giving our patients/clients full information so that they can make a clear and informed autonomous decision?

Justice: Existing laws show that medical, allied health and social work professionals must give full information to patients based on risk and clinical governance protocols. We need to be informed of and explain trials and their outcomes. Are we giving full information based on clinical trials i.e. Does this intervention work? What are the risks involved? What are the risks of doing nothing? I would argue that we do not yet have clear evidence from clinical trials.

Beneficence: The procedure is provided with the intent of doing good. How can we measure this if we do not have the medical and social evidence that social and medical transitioning is effective and not harmful?

Non-maleficence: Procedure does not harm the patient involved or others. Surgical and medical intervention on otherwise healthy bodies is a harm in and of itself unless it can be proven otherwise.

SUMMARY:  Risk Assessment: Clinical, Non-Clinical and Financial. 

For risk managers, there appears to be a clear risk to legal, medical and ethical cover from referral to treatment and follow-up with transgendered clients, as outlined above. We need to look at the legal implications of informed consent. We must ask ourselves the question: Is it legal or ethical to obtain a signature for intervention from a potential patient who has not undergone a full assessment and consultation process, who has not been informed of likely clinical outcomes and/or long-term effects of intervention and who also may be unfit to consent because of coercion, language comprehension, cognition or mental health difficulties.