What is informed consent?

What is informed consent?

Disclaimer: I’m not a medical professional, but I’ve got familiar with the terms from them. I hope this will help others understand what medical professionals mean.

I’m going to cover two things in this post, what informed consent means in the broader medical context and what it means to transgender healthcare.

What is informed consent?

Informed consent is the underlying basis of all modern non-emergency medicine. In order to provide any medical treatment the patient must consent to the treatment and the patient must be provided the risks, benefits, and method of the treatment, and the clinician must be sure the patient understands the information. This is one of those things that seems pretty obvious, but historically has been far from the truth.

So whenever you see a doctor and they prescribe any form of treatment there’s a mental checklist they do:

Of course humans are human and this isn’t done perfectly every time, so it’s repeated. This is why (good) pharmacists will check you understand the medicine as well, and surgeons re-check your understanding before they start the procedure.

There are two factors that aren’t quite obvious here. One is that for things like medicine you can opt not to take them, so full details don’t have to be provided in the appointment and instead an information sheet can be given to you. The other is that to understand if the patient understands the risks the clinician themselves must understand them, this is why sometimes you’ll be referred to a specialist to confirm a prescription even though it could have been done by the first clinician.

Informed consent in transgender healthcare

Now this is slightly different, it relates to the historical pathologisation of transgender people. This means requiring a formal diagnosis of gender dysphoria by a psychiatrist prior to commencing HRT, which may require several sessions withe the psychiatrist and historically the awful practice of “lived experience” - living full-time as your true gender prior to any form of medical treatment. Thankfully most areas in NZ don’t require psychiatric evaluation (looking at you Otago and Nelson) and lived experience is consigned to the history books.

So informed consent means two things here, first the medical basis of treatment, and secondly your ability to request gender-affirming treatment without any formal diagnosis - in fact being transgender is not considered a medical condition at all.

Of course the prescriber still needs to be sure you fully understand the effects and risks of HRT. This may mean requiring a psychiatric evaluation to ensure your understanding (but not for a diagnosis), or referral to a specialist gender centre. Both WPATH and PATHA are clear that withholding HRT is not a neutral stance and is likely to lead to worsening of mental health, but unfortunately this message hasn’t got through to everyone.

To be clear this is also true of any other medical treatment, but GPs tend to be much more risk-averse with conditions they haven’t encountered a lot. There are also some areas in NZ with particularly backwards health authorities who insist on psychiatric evaluations and other gatekeeping, even though this is against the national guidelines and the practitioners might be comfortable with evaluating by themselves..

Cool, and?

And this is the cause of a lot of confusion. Informed consent means one thing to medical professionals and a similar but subtly different thing to the transgender community. While clinicians used informed consent to mean validating the patient’s understanding of the treatment, we use informed consent to mean removing the old barriers to treatment, so get very frustrated when these are still present.

Ideally patient-driven therapy would be more accepted, where patients can set their own hormone targets and clinicians monitor for unsafe dose levels or negative health effects. Unfortunately this is a significant step for healthcare providers and unlikely to happen, even though it would get people off DIY HRT on to safer methods. This wouldn’t be universal, a lot of people feel safer or just prefer having doctors set the treatment plan.

Lastly the lack of an actual diagnosis does put transgender healthcare in a slightly weird spot; it’s not considered a medical condition, but we still need medication. This does have some implications that I’ll explore in a later post.


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