Informed consent - what does it mean to you?

[Cindy]

Most models of transmedicine are either using informed consent or moving towards it.

But there is a definite difference in what people think informed consent is.

WPATH SOC uses a definition of saying that informed consent requires an evaluation by a mental health professional, be they a family doctor with suitable education, a psychiatrist or a clinical psychologist. Again with suitable education in transmedicine.

Many family doctors feel uncomfortable in prescribing or referring people for HRT and then seek the opinion of a psychiatrist whose speciality involves transmedicine.

This causes delays as the waiting lists are, as we know, incredible.

Members of the community may have a different interpretation of informed consent, ranging from hormones on demand, to wanting some psychiatric support.

So what is your opinion of what informed consent is?

Now, most 60-70% of people who identify as transgender need little evaluation, some do seek some support in dealing with our changing circumstance both physically, socially and in particular with family. But the 30% of other people require psychological support and evaluation. Some require psychotherapy that may be quite prolonged.

So how do we deal with this?

OK I was one of the 70% who just needed a bit of help, and was very grateful to receive it from very caring professionals who were concerned, interested and supportive. Indeed I have my psychiatrist available when ever I may need to talk to her. I have to admit that is a wonderful feeling for me to fall back on.

But we are all different.

So what is your concept of informed consent?

Oh and I want intelligent debate, not rants.

[Elis]

In order to request hormones I feel informed consent is the best model; as long as you are able show you've thought about it long term and willing to see a psychiatrist to rule out any mental issues or to discuss other problems you may have. At the end of the day you wouldn't be required to go through a lengthy inquest if you required other medicines; so it shouldn't be any different for HRT. Being in the UK I am appalled by the long waiting lists to just get a first appointment at a GIC; plus the many stories of GPs losing referrals in the shuffle. Considering the high rates of mental health issues and suicide in the trans community; informed consent seems like the best solution.

[Ms Grace]

I don't have time to go into anything overly detailed at the moment, but I'd like to know what constitutes "informed" and how does the medical professional evaluate the person is actually across that? I would have said I was "informed" three years ago when I was looking to get started on HRT. In reality I knew very little by comparison to today. Sure, some of that has come through lived experience but a lot of it is just knowledge about health and best practice.

So what constitutes "informed" anyway?

[Rachel_Christina]

For me informed consent means "GIVE ME" ha
Unfortunatly I'v been waiting an age for hormones, i find it terrible it is so hard to do, I'v been waiting years trapped, now I'v decided I want them now!
The effects are suttle and semi reversible anyway, most would decide it wern't for them early enough they would return to normal if they stopped! I for one know I'm a woman, and need them, the wait only makes me scared I'm going turn into the Hulk in the morning :S

[stephaniec]

For me informed coscent for HRT and evaluation by medical professionals for GCS. Informed consent is what I do for my HRT . The fist session with my Endo I was sat down given a sheet of paper explaining what the effects of HRT were and to sign if I excepted the treatment (period)

[AnonyMs]

In an ideal world you'd have psych evaluate people and screen out those who need further help and pass the rest along. If you're informed and sane you can do whatever you want.

In the real world we see people unfairly denied for all sorts of reasons, from religious, social, and lack of resources. People are being harmed by this. People will no doubt be harmed by on demand HRT as well. Either way some people are going to get hurt, the only difference is how many and who.

And who decides who gets hurt? Its the real world, we don't get to choose no one.

For other types of medical treatment society errs on the side if the patient making the decisions, and too bad if they screw it up. I think that's a reflection of our culture of individual freedom, and probably capitalism.

Informed consent in the USA, which is really on demand, seems the only solution given their culture. I'd not appreciated what its like there until recently with all the anti-trans and religious going's on.

The same goes for much of western Europe, either cultural of economic limitations. That's not going to get fixed except by on demand. Psych approval seems to work in much of Australia, not too much cultural problems or resource constraints (not quite sure what the problem is in South Australia).

If we applied the same rules to everyone else as we did to trans people I think you'd see the rules being thrown out pretty quickly. I suspect things will move towards more freedom and one day people will look back and think of now as the dark ages. Much like young trans kids do now for decades past.

[Cindy]

In an ideal world you'd have psych evaluate people and screen out those who need further help and pass the rest along. If you're informed and sane you can do whatever you want.

In the real world we see people unfairly denied for all sorts of reasons, from religious, social, and lack of resources. People are being harmed by this. People will no doubt be harmed by on demand HRT as well. Either way some people are going to get hurt, the only difference is how many and who.

And who decides who gets hurt? Its the real world, we don't get to choose no one.

For other types of medical treatment society errs on the side if the patient making the decisions, and too bad if they screw it up. I think that's a reflection of our culture of individual freedom, and probably capitalism.

Informed consent in the USA, which is really on demand, seems the only solution given their culture. I'd not appreciated what its like there until recently with all the anti-trans and religious going's on.

The same goes for much of western Europe, either cultural of economic limitations. That's not going to get fixed except by on demand. Psych approval seems to work in much of Australia, not too much cultural problems or resource constraints (not quite sure what the problem is in South Australia).

If we applied the same rules to everyone else as we did to trans people I think you'd see the rules being thrown out pretty quickly. I suspect things will move towards more freedom and one day people will look back and think of now as the dark ages. Much like young trans kids do now for decades past.

I think both of those remarks are incorrect. 'Gatekeeping' is the norm in general medicine. OK except people can go and get plastic surgery just about on demand, with sometimes tragic results. But general medicine? Nope. When my wife needed brain surgery I had to sign away every right - gatekeeping?

As far as the USA, Callen-Lorde can take many months for ''informed consent" they do not practise hormones on demand.

[AnonyMs]

Well, I'm not a doctor, but...

I think both of those remarks are incorrect. 'Gatekeeping' is the norm in general medicine. OK except people can go and get plastic surgery just about on demand, with sometimes tragic results. But general medicine? Nope. When my wife needed brain surgery I had to sign away every right - gatekeeping?

The pharmaceutical industry in the USA advertises heavily to the general public, which I'd say shows that people are demanding medications from doctors and getting it. There wouldn't be much point to spending all that money otherwise. Banned in other countries for some reason...

And in Sydney we have this,
"A leading Sydney surgeon has confessed to performing surgery that doesn't work due to patient pressure and widespread adoption of procedures that have become accepted without enough scrutiny."
www.smh.com.au/nsw/confessions-of-a-sydney-surgeon-why-your-operation-may-not-work-20160302-gn95ya.html

I think cosmetic surgery is actually a good example though. Just about anyone could understand why you'd have gatekeeping for brain surgery, and who in their right mind would want it if they didn't need it. Few people are even qualified to understand if its necessary or not. I find it hard to articulate quite why, but I think cosmetic surgery is similar to trans surgery (apart from trans surgery actually being cosmetic surgery). It can certainly have a big impact on your life either way, and nobody except yourself can say if you need it or not.

Outside the medical profession there's tattoo's, which is also quite similar in potential negative impact and yet there's nothing stopping people doing it. Lots of people regret that, and we really should have informed consent for it. The reason we don't is likely cultural.

You have to sign away your rights, but I don't see how that relates. You're being informed, but not really. I've seen those things and there's no way to properly understand them. Everything and anything can go wrong, so what good is that? The thing you really want to know is how good your doctor is, and what is the probability of problems with each doctor/hospital, and you won't find that out. You sign your rights away meaning you can't sue them, or is there something else?

As far as the USA, Callen-Lorde can take many months for ''informed consent" they do not practise hormones on demand.

Unless I'm misreading an awful lot of discussions, here and elsewhere, there's a lot of on demand style informed consent in the USA, and its increasing. There's the other varieties of course.

[Rejennyrated]

Ah-ha – well forgive me but I'm going to use this to practice one of my model answers for my forthcoming exams, as this question is indeed one which has come up in medical finals before.

Informed consent is not equivalent to treatment on demand.

As I'm sure you, Cindy, are well aware, it's a concept which has a precise meaning within the medical community. The problem is that this meaning is not what most lay people would understand it to mean.

It means that a patient has consented to a procedure having been given a proper level of understanding of the relative risks and benefits of the procedure, the precise process involved, and has been appraised of any commonly available alternative approaches.

It does NOT mean that a doctor is obliged to provide a particular treatment which, in their clinical judgement, will not benefit the patient, nor does it fully exonerate them if they do, and the treatment then proves harmful.

So within medical jurisprudence it is categorically not an alternative to conducting a proper clinical assessment (for example RLE), rather it is the final step in that process.

It does NOT mean that a patient is assuming all of the risk, it just means that the patient has been fully informed of all the possible options and then properly allowed to express their own preference, which has been taken fully into account.

As a patient it gives you the right to request or refuse a specific approach, but it does not mean that the clinician is the obliged or indeed cleared to follow that if they do not agree that the treatment has a reasonable chance of benefit.

As a medical student, one of the things we are marked on in every single OSCE station that we do is the quality of our "informed consent" of the patient for that station. Hence I might say something like:-

"Hello my name is Jenny ### and I'm a 4th Year medical student. The doctor has asked me to take a look at your ankle today, this will involve you taking off your shoes and socks, and I'm going to need to look feel and move the ankle, which may cause you some slight discomfort. Please do let me know if you feel any pain.

As I'm a student I will be fully supervised, and if there is any doubt over the findings my supervisor may wish to repeat the examination, so if you would prefer that my supervisor takes over at any point then please feel free to ask. It won't affect your care if you do. Are you happy for me to carry out the examination?"

That is an example of proper informed consent for examination.

[Laura_7]

I suspect things will move towards more freedom and one day people will look back and think of now as the dark ages.

This is a very good point imo.

It has a hstorical connection.

The last years people have evolved. Looking back decades looks like another age.
Ever watched an old movie, and the attitudes people had towards each other and towards women ? Unthinkable now.
Most people now laugh about it.

It will continue. There will be counter waves of upturned conservatives which will not stand the test of time.
People wanting freedom will not be held back.


In some places there are processes which are not much more than an official facade.
If people are really dysphoric they should be treated imo.
It can help them lead a more happy life, and more and more places cover it.
Over a lifetime public expenses spent are small if people live happy and productive lifes.

A short evaluation if people are sane might make sense imo ...
and maybe the offer for psychological support if people need it...


*hugs*

[naa]

1.  Be sane
2.  Know the risks
3.  Realistic expectations

Be sane.  I don't mean perfect mental health.  I just mean are they judged mentally able enough to make their own life decisions.

Know the risks.  Understand that the medication can have side effects, and can even rarely lead to outcomes as serious as death.

Realistic expectations.  Know that HRT probably isn't going to make you look like your average cis person, that it'll take time to have any effect and those effects may be small.

That's what informed consent means to me, and I support it for both HRT and surgery.

[Devlyn]

I certainly wouldn't approve of medicine on demand.

My understanding of informed consent for hormones is that you are guided through some literature advising you of the health risks of the drugs you will be receiving, and what the reversible and irreversible changes are. Then you get blood work done to determine if you're healthy enough to take them. Then you get your approval and prescription.

Contrast this to buying a car. You receive absolutely no mention of the risk of serious injury or death before you buy it. This is in the face of over 30,000 people per year losing their lives in automobile accidents, in the USA alone.

How many of us die from estrogen? I rest my case.

Hugs, Devlyn

[suzifrommd]

Were I a doctor, I'd want a psychiatric evaluation to make sure my patient was competent to make a decision and understand the implications.

But I think the concept of being "diagnosed as transgender" is abhorrent. No one should ever be in a position of judging someone else's gender.

Does that distinction make sense?

[AnxietyDisord3r]

In an ideal world you'd have psych evaluate people and screen out those who need further help and pass the rest along. If you're informed and sane you can do whatever you want.

In the real world we see people unfairly denied for all sorts of reasons, from religious, social, and lack of resources. People are being harmed by this. People will no doubt be harmed by on demand HRT as well. Either way some people are going to get hurt, the only difference is how many and who.

And who decides who gets hurt? Its the real world, we don't get to choose no one.

There are a lot of things done in medicine just to cover doctors' butts. This seems to be one of them. If the SWAG of 30% of hormone seekers needing additional help is true then the MD can refer these patients to a psychologist. Outside of that there's the, what, 1% who have some sort of other serious psychiatric condition that can manifest in them flipping identities (including gender identity) every few days. But a psychologist would probably have to know the patient for some time to even identify this. It might go unnoticed at one visit. So the butt covering is not really butt covering.

It seems like there is very little harm in administering female replacement hormones so there is little need to put up barriers. T causes irreversible changes so I could see the provider being concerned that the patient understands and is capable of understanding what is going to happen to them. My endo held an initial consultation and went over her own personal checklist of things you have to know. To be honest there was a lot I didn't know leaving that office and it would make sense for MD's to refer trans patients to trans networks or organizations where they can learn more about what to expect if the patient hasn't done so already. In the US we have the American Heart Association. Maybe we need an American Trans Association to do patient and doctor education.

I think our condition should be treated like any other rare genetic condition or disease. In the US it definitely is not treated that way, but it should be. We get so caught up in social and legal advocacy that sometimes patient advocacy gets forgotten, I think?

[BunnyBee]

What it means to me, I suppose, is based on my rather limited first-hand experience with it, which was when I went to my current endo for the first time I forgot my letter and the Dr. was like, "thats fine, just fill out this form stating you understand the side-affects that may come with HRT [which were stated on the form] and that's all I need." I was living as a woman at the time and had been on HRT for many years, but I got the feeling that didn't matter.

To me, it's sensible to make hormones relatively available, just because the side affects are mostly reversible if you stop within a certain amount of time and the risk factors while being monitored by a doctor aren't that high, and they can save lives.  Some people used to give up before they got through all the hoops, others never had the means to get through them.

I feel like if you need therapy, you should definitely get it, but I don't feel like it should be required of people that don't need it. I do think the "informed" aspect should probably be a little more scrutinized than I felt like it was at my endo, because I don't think you should be able to just prance into it lightly with no knowledge or care. Then again, maybe I just seemed like I knew what I was doing.

[Dena]

Informed consent means pretty much the same standards I was treated under many years ago. An evaluation that you are able to understand the consequences of your actions and you have sufficient knowledge of the treatment to make your own judgement. Going back on hormones a couple of months ago under Callen-Lorde standards, I did this in one visit because it was clear I knew what I was doing and had experience with this.

As for plastic surgery, when I had it, the surgeon I had interviewed me as I interviewed him. He made sure I had no false expectations and was making a reasonable request. If I had failed his interview, I suspect he would not have granted me surgery. No doctor should preform a procedure that they are uncomfortable with nor should they exert control over a patient when it's not required.

[AnonyMs]

I just came across this study

Breast implants linked to higher risk of suicide
http://www.mc.vanderbilt.edu:8080/reporter/index.html?ID=5747

"Women who undergo breast augmentation surgery are nearly three times as likely to commit suicide, according to a study published in the August issue of Annals of Plastic Surgery"

"The strong risk of suicide suggests plastic surgeons should consider mental health screening and follow-up for women who seek breast implants."

[freebrady2015]

Very interesting, I had never heard of the 60-70% statistic of those of us who are not in need of mental health interventions. I'm one of those 70% and I firmly believe that being transgender does not require therapy - it's society that needs therapy so that they can realize we are fully functioning wonderful human beings.

But I can also see it from a doctor's perspective who has to weigh the fact that HRT may lead to infertility among other health risks. However, every drug known to man has side effects and prescribing any medication always carries some sort of risk. So, no, I don't think evaluation by a mental health professional should be required for informed consent. Your doctor should tell you x, y and z are the possible side effects of gender affirming hormones as an FYI.

[Peep]

Well, the gatekeeping system the NHS is using at the moment is supposed to be to make sure that we understand things like the changes that HRT will produce, and that we're going to be able to cope emotionally.

With that in mind, I've had two psychologist meetings (referred by my GP) so far. I don't really know how anything that was discussed during them would allow the doctor to know that i'm informed - I wasn't asked if i know what T would do to my body, or given ANY information from the health system, not even a suggestion that I look at the NHS website. I said I had done some research but she didn't ask what i learned or where from - they don't know that I'm not under the impression that T is administered through jellybeans and will turn my into Tom Hardy overnight. We also didn't discuss my mental health - we talked about my feelings about my gender, my sex life, and if i was into sports or dollies as a child. All things that I'll go over again at the specialist GIC. Was the psych not supposed to be asking if I had a support system, how i manage my anxiety, if i feel suicidal (I do, but it's hard to come out and say it, and no one has ever asked). I don't even think i was asked if i drink or smoke...

Overall, I think that people do need information about medical procedures that they're about to undergo, and if there's any holdup in getting treatment it should be for education, and not for scare tactics. They should be making sure that people are educated and supported, and not left to learn things on their own, or 'tested' by putting themselves in danger.

I understand that the waiting lists are long for GICs, but they're also long for mental health care, and I feel like I wasted two hours of NHS time that could have gone to someone that needed it more. The NHS guidelines state that we don't need mental health screening before referral to a GIC, which suggest to me that the GIC do mental health screening of their own (?) which seems better as they're more likely to be able to pick out which issues are mental health and which are gender dysphoria. But the NHS isn't impressing on GPs that they don't need to do referrals to mental health, and on psychologists that they're not gender identity specialists.

[melissa_h]

In the US... I see Informed consent used most frequently to bypass the WPATH traditional gate keeping of involving several practitioners. A patient is fully informed of actions, potential reactions, and then can sign an acknowledgment and begin a treatment without the time and expense of involving several practitioners.

I am informed of risks/benefits and I decide whether or not to proceed.  I am informed and I give consent.  Informed consent.

Technically, you could see 3 doctors a psych and a faith healer, but even then, you wind up to giving an informed consent to begin... So I very much understand the origin of the question.

But... I see it most typically used to refer to a patient driven selection of care, with fewer "potential no votes" in the process. Obviously a doctor can refuse if they feel something is truly unsafe for a patient.

I started reviewing an informed consent program in Chicago a few years ago.... It initially required an initial Dr visit, then a consultation with a hormone specialist to review your case, followed by another dr visit to begin getting meds.

I *think* people were pushing back on the hormone consultation, because it got dropped at some point before I started...

Now... The US has laws that can vary by state, so it's very easy for informed consent to take on different meanings by region and not be exactly the same.


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