#informed consent

c-ptsd-mia:

I just found out, for the first time, all the long term risks of a hysterectomy and I’m fucking anxious and can’t sleep.

I had a partial laparoscopic hysterectomy because of endometriosis. They took my cervix too without telling or asking in advance.

I wasn’t told the risks, before or after, the surgery. I had to find out through fucking Tumblr. That’s NOT informed consent - I wasn’t informed!!

And I don’t know how to mitigate the risks. I still have my ovaries, but that won’t prevent a possible fucking prolapse. That won’t stop my organs from moving down, or my pelvis from widening due to torn ligaments.

I just.. I’m so angry and scared. I’m 24. I have many years ahead of me, most likely. And I have no idea what that will look like, 5, 10, or 20 years down the road. I’m fine, right now, but who knows how long that’ll last?

I’m so upset. Modern medicine failed me yet again. Why isn’t anyone told these things??

I should have been told. Other women should have been told. But no, they don’t give a fuck about us and it really shows, too often.

I’d really appreciate some advice from women who have had the same thing done to them, and are older. Or just some kind words. I’m so anxious right now. My future was uncertain enough without all this extra bullshit.

discoursir:

thanks to the informed consent model, i start T on Friday transmeds stay bitter while you’re on your waitlists and continue to enable the system that makes it as difficult as possible to access trans resources and medical care

you do realize that transmeds can also use informed consent, right? 

like. it’s not a tucute only zone. we can and do get hrt without sucking wpath’s cock first all the time.

anarchist-pug:

unpopular opinion but we should make hrt and surgery easier to get, not harder. informed consent should be an option for all fully-informed adults and it really doesn’t matterthat a handful of trendy cis people might take advantage of that and transition when they don’t need to.

like sorry but i’ll prioritize giving trans people access to the healthcare they need over protecting stupid people from their own bad decisions any day. i can’t believe that’s even a question.

i can honestly say with absolute certainty that i’d be dead without informed consent and like seriously, i can’t fathom why so many of y’all wanna shoot yourselves in the foot in the name of “protecting” tucutes from getting dysphoria.

like some of you really care more about the tucutes you claim to dislike than you care about yourselves and your trans siblings and it really shows. it also sucks.

unpopular opinion but we should make hrt and surgery easier to get, not harder. informed consent should be an option for all fully-informed adults and it really doesn’t matterthat a handful of trendy cis people might take advantage of that and transition when they don’t need to.

like sorry but i’ll prioritize giving trans people access to the healthcare they need over protecting stupid people from their own bad decisions any day. i can’t believe that’s even a question.

Lee says:

Hi everyone! I’m posting today to specifically point out an awesome resource that more people should be aware of.

The Gender Affirming Letter Access Project (GALAP) is an organization of independent clinicians who help transgender people access gender-affirming medical treatment like hormone replacement therapy and surgery by providing free letters using the informed-consent system.

The providers listed in the GALAP directory have pledged to complete at least one free informed-consent session and subsequently write at least one free letter per month.

This is super important because many people aren’t able to get insurance coverage for the treatment they need without getting a WPATH-compliant letter, and that can make it difficult for someone to be able to start their transition.

For example, many low-income trans people aren’t able to afford multiple therapy sessions which makes getting the WPATH-compliant letter difficult for them.

Similarly, trans people living in rural areas face more barriers in being able to find therapists near them who are trans-friendly and currently accepting new patients.

In my own personal transition, I’ve needed to get…

1. 1 letter from a mental health provider to start HRT
2. 1 from a mental health provider plus 1 letter from my testosterone prescriber to have top surgery
3. Letters from 2 different mental health providers respectively plus one from my testosterone prescriber to get a hysterectomy
4. Letters from 2 different mental health providers plus one from my testosterone prescriber to get the first stage of phalloplasty
5. Letters from 2 different mental health providers plus one from my testosterone prescriber to more to get the second stage because my first set of letters had expired in the meantime
6. And I’ll need 2 more for the third stage because I’ll be switching insurances and need to re-start my approval process

For anyone keeping a tally, I needed to get 10 mental health letters saying that I am trans and need to transition before I could get the medical care I needed, not including the “proof of HRT” letters.

It’s ridiculous— If I had needed treatment for any other reason, I wouldn’t have needed to jump through so many gatekeeping hoops where cisgender medical professionals were the arbiters if I was trans enough and deserve care.

For example, my stage 3 phalloplasty surgery is just having an erectile implant placed because I have erectile dysfunction. This is true of all post-phalloplasty patients as a result of the way our penis is structured.

If I were a cisgender man getting the same surgery for erectile dysfunction and having the same device implanted, I would not need to see two mental health professionals first who would judge me on my gender identity before deciding whether I should be allowed get the implant.

The urologist would just use their best medical judgement in determining whether the surgery would be a good idea and then explain the risks and benefits of the procedure and let me decide if I wanted to go ahead and do it. Then the doc would send the insurance the preauthorization info and codes for the procedure based on the diagnosis, and no required mental health evaluation or therapist letter would be involved at all.

But because my surgery is a “gender affirming surgery” for “treatment of gender dysphoria,” I have to see two therapists first and they will judge if I’m “trans enough” and then they have to write a letter saying that I need the surgery because I’m mentally ill (aka diagnosed with “gender dysphoria”) before my insurance will cover the surgery that’ll let me have an erection.

In my opinion, that’s paternalistic, demeaning, unnecessary and a waste of everyone’s time. And it isn’t just weird, invasive, and annoying— it can determine whether you’re able to access necessary medical care.

The GALAP also addresses how requiring a letter is a form of gatekeeping which can negatively impact multiply marginalized minorities, stating, “We are aware that people who do not fit a certain narrative about what it means to be ‘transgender’ often receive subpar care and face more barriers to receiving the care they need. We acknowledge that this greatly impacts people of color and indigenous communities, nonbinary people, and neurodivergent people.”

The provider will have an interview session with you, using the informed consent approach in their interviewing, and then will write a letter, again using the informed consent approach in their letter writing process.

The interview session, the letter (and any additional copies of the letter) are all supposed to be pro-bono, which just means it’s free. They aren’t supposed to charge you for anything, like additional time on letter writing outside the therapy session, any clinical consultation they need to perform, or any communication with your surgeons and medical staff.

I believe that majority (or possibly all) of the providers in the directory will only provide informed consent letters for legal adults as the wesbite says “writing letters for youth brings up complexities since minors may assent but not consent without parent/guardian support to move forward with any medical interventions,” so it’s a resource that is more useful for those who are 18 or older.

You’ll also need to discuss with your letter writer if they are comfortable officially diagnosing you with gender dysphoria if your medical provider/s and/or insurance company requires a formal a diagnosis of Gender Dysphoria to access gender-affirming medical services.

You should also check whether your letter writer needs particular credentials.

My insurance said:

“One of these letters must be from a psychiatrist, psychologist, nurse practitioner, psychiatric nurse practitioner, or licensed clinical social worker with whom the member has an established and ongoing relationship.

The other letter may be from a psychiatrist, psychologist, nurse practitioner, physician, psychiatric nurse practitioner, or licensed clinical social worker acting within the scope of his or her practice, who has only had an evaluative role with the member.”

Your insurance company may have more rigid requirements and need a letter from a medical doctor or doctor of osteopathic for example, and may not accept a licensed clinical social worker, or they may allow any mental health practitioner.

So it’s good to double-check that the person you’re contacting in the directory has the license you need for your requirements.

The GALAP site says:

“Just because someone has signed The GALAP pledge or uses our name and logo on their website unfortunately doesn’t guarantee that they are honoring our pledge’s totally FREE letter writing (and session) commitment. 

When reaching out to request a letter, we encourage you to ask the therapist/letter writer:

1) Is this entire letter writing process (including the time it takes to meet) completely free, as in keeping with The GALAP pledge?
2) Have you written surgery letters on behalf of trans and nonbinary folks before that have been accepted by surgeons and/or insurance companies?

While we can’t monitor or endorse therapists who sign the pledge, you can find out if they will honor the pledge BEFORE you meet with them.”

The (current as of 04/2022) list of states that currently have a provider who has agreed to write free letters is below:

1. Alabama (1)
2. Alaska (2)
3. Arizona (9)
4. Arkansas (2)
5. California (62)
6. Colorado (19)
7. Connecticut (11)
8. Delaware (1)
9. District of Columbia (1)
10. Florida (11)
11. Georgia (22)
12. Hawaii (0)
13. Idaho (7)
14. Illinois (21)
15. Indiana (9)
16. Iowa (0)
17. Kansas (2)
18. Kentucky (1)
19. Louisiana (3)
20. Maine (2)
21. Maryland (18)
22. Massachusetts (17)
23. Michigan (13)
24. Minnesota (1)
25. Mississippi (1)
26. Missouri (2)
27. Montana (1)
28. Nebraska (3)
29. Nevada (1)
30. New Hampshire (3)
31. New Jersey (5)
32. New Mexico (1)
33. New York (26)
34. North Carolina (8)
35. North Dakota (0)
36. Ohio (7)
37. Oklahoma (2)
38. Oregon (11)
39. Pennsylvania (11)
40. Rhode Island (2)
41. South Carolina (2)
42. South Dakota (0)
43. Tennessee (4)
44. Texas (8)
45. Utah (5)
46. Vermont (3)
47. Virginia (8)
48. Washington (22)
49. West Virginia (1)
50. Wisconsin (6)
51. Wyoming (1)

Most providers can only provide a letter to people residing in their state(s) of licensure, and there are some states that don’t have any providers listed at all, so hopefully more providers will sign the pledge and get listed in the directory in the future.

But even as it is today, this is a super-useful resource for trans people who are looking to medically transition, and hopefully more people become aware of it and are able to make use of it going forward!

Our post on how to start HRT in the USA has linked to the GALAP website so this isn’t the first time I’ve mentioned their directory, but I felt like the GALAP directory deserved its own post, so here it is!

[image: the card I carry with to explain epidurals during labor, created by Penny Simkin]

I had a few requests for me to share my epidural informed consent ‘script’, so here it is in it’s MOST general version. Please remember that this is just an idea of what I might say, and it would definitely be different when I am with a laboring person, as I take their specific health and priorities and concerns and personality into consideration when I discuss this with them. This script is for someone who is undecided during labor about whether or not they want an epidural and is asking for more information.

*Of note: I don’t bring pain medication up without them starting the conversation unless I see them truly suffering. If I bring it up and they say no, I don’t bring it up again.

The conversation usually includes a few parts:

1. Explaining what an epidural is and how it works
2. Explaining the process for inserting the epidural
3. Discussing risks, benefits, and alternatives
4. Reviewing everything, answering questions, and then stepping out of the room to give them time to discuss if they would like that.
5. Occasionally it may include offering a vaginal exam ahead of time if they think the information gleaned from the exam would change their decision

“I remember from your birth plan that you didn’t want to talk about pain medication unless you brought it up yourself - now that you’ve mentioned that you might want an epidural, do you feel like you’d like to talk about it?  There’s no rush since I KNOW that you can do this and ARE doing this in the exact right way for you right now.”

If yes, I continue.

“Epidural anesthesia is a pain medication that numbs you from here [show them the top of the uterus/diaphragm area] down to your toes. Everyone experiences them differently, so some people are completely numb and cannot even move their legs, while most people have some control over their legs but are numb enough to not feel the intensity of the contractions any longer. While you won’t feel the intensity, you will still likely feel the pressure of contractions or of the baby’s head as the descend in your pelvis, and you will still feel touch to the skin. You will definitely feel the baby’s head coming out, and that may be painful or intense even with the epidural in place. Our anesthesiologists usually do an epidural that allows for your legs to move, and so we will definitely help you into whatever position you need - sitting up, lying down, squatting, hands-and-knees, lying on your side - as long as you are still in the bed. It’s not usually safe to try standing with the epidural since most people don’t have enough sensation in their legs to hold their weight.

“The way they place the epidural is they have everyone but one partner/doula/support person step out of the room and you sit at the edge of the bed with your shoulders slumped over. The anesthesiologist will give you a numbing shot to the skin on your low back which some people say is the most painful part of the whole ordeal - it feels like a bee sting. Once that area is numb, they insert a larger needle into the epidural space, in your spine. [I carry an illustration of this to explain what I mean.] Then just like an IV in your arm, a tiny plastic catheter (tube) is threaded into that space and the metal needle is removed. The epidural medicine drips in a small amount at a time through the catheter. This way we can give you more or less medication at any time depending on what you want or need. Sometimes we will increase the medication if the regular rate isn’t strong enough, or we will decrease if you need more sensation to move or push.  It usually takes about 15 minutes to place the epidural and 15 minutes for it to start working.

“In order to have an epidural placed you will need an IV running fluids through your arm, continuous fetal monitoring, and a urinary catheter since you won’t have enough sensation to empty your bladder yourself.”

When it comes to talking about pros and cons I talk specifically about each person’s scenario instead of more generally, since the person I’m talking to is in labor! They don’t have much ability or desire to be thinking about anything that isn’t directly pertinent to them. Because of this I will discuss the epidural’s effects on the part of labor that they’re in now vs the future, but ignore the past. As in, if they’re in active labor I won’t talk about how an epidural might slow down early labor, but I might talk about it’s effects on pushing. For example:

“At this point you are in what we call ‘early labor,’ which means that your labor is still ramping up. It doesn’t mean that early labor is necessarily easier or that you will be in this place for much longer, but I have seen labors slow down when people get an epidural at this time. If that happens, we will talk about trying to stimulate your labor again either by position changes (though slightly limited in bed), nipple stimulation, membrane sweep, or pitocin. If you are coping well and able to go another hour without pain relief, I would recommend that we continue without. However the minute you tell me you have decided on epidural pain management, I will call the anesthesiologist. You are the only one who knows what’s right for your body.”

Another option for someone in active labor:

“At this point in your labor it’s unlikely that your contractions will slow down if you get an epidural, and in fact it’s possible that the relaxation of your pelvic muscles that comes with an epidural could allow baby to descend more and help to open your cervix with the pressure of their head. There’s no knowing what will happen either way.”

“The main risks to an epidural are the possibility that: 

• Your contractions may space out [discuss what this would mean for their labor]
• The possibility of a postpartum headache (this headache happens to about 1 in 100 people and is treatable with pain meds, but is still a very frustrating experience in the postpartum period)
• The possibility that your blood pressure will drop and therefore your baby’s heart rate will slow (if this happens you can expect us to move you from one side to another, give you a ‘bolus’ aka large about of IV fluid, and maybe give you oxygen through a mask. Sometimes this can be scary because many Drs & RNs will come into the room all at once to address the issue.  Though this may seem scary, when it is treated with the usual measures, it does not cause harm to baby or increase the risk for cesarean birth.)
• The possibility that the epidural won’t work at all or will have a small ‘window’ in which the epidural doesn’t work. If that happens our options are to grin and bear it, to try boosting the dose, or to take it out and try replacing it entirely.”

Here is a more extensive chart from LaborPains that I bring out sometimes when people are interested/in the right mind space to discuss further:

[image source]

“The research is ambiguous when it comes to whether or not the medications passing through the epidural will affect the baby as well as the laboring person.  There are no known long term disadvantages for babies.  Babies are much less affected by epidurals than other medications used in labor that are administered by IV.”

“There are other things we could use as well to support you in coping with these contractions:

• Nitrous oxide - laughing gas (aka gas and air)
• IV medications (Morphine, Stadol, Fentanyl, Nubain, Demerol)
• Hydrotherapy - hot water in the tub or shower
• Sterile water injections - local pain relief without medications for back pain
• TENS units
• Massage, position changes, labor support”

See my post going into depth on those topics here.

“What questions do you have?  Would you like me to step out for a moment so you can discuss this with your partner/doula/support person?”

Occasionally, if I think it would be useful, I will offer a vaginal exam before an epidural.  For some people going through transition, the knowledge that they are close can give them some very needed encouragement.  Vice versa, the knowledge that the cervix has not changed in many hours can also give people the information they need to decide that they would like an epidural.

“Would you like a vaginal exam before you decide on whether you would like pain medication or not?  Many homebirth midwives will almost never use vaginal exams since they are quite right in thinking that vaginal exams don’t change the course of labor.  However, in a hospital setting things change.  There are interventions like epidurals to be considered, and a vaginal exam can give useful information to someone deciding on using an intervention.  The exam itself IS an intervention in its own right.  The information derived from a vaginal exam may tell us what stage of labor you are at right now.  It does not tell us what will happen in the next 5 minutes (I’ve seen people dilate from 5cm to 10cm in 5 minutes) or in the next 5 hours (I’ve seen people be fully dilated for 5 hours before starting to push or giving birth).  A vaginal exam is not required before you get an epidural, though.  If you know for sure that’s what you want right now I will call the anesthesiologist right away.”

Resources:

Pain Medication Preference Scale - by Penny Simkin, for use before labor

https://www.ncbi.nlm.nih.gov/books/NBK279567/

Post by me on Epidural side effects

Is it ok to get an epidural?

What other pain relief options exist besides epidurals?