What Not to Do
First do no harm
When you completed medical school, you stood up in-front of your teachers, peers, and your family and took an oath to do no harm. This was the culmination of your study before beginning your residency and becoming a doctor. It was such a pivotal moment in your life, and one that should fill you with so much well deserved pride!
Below are real scenarios that cause lasting harm. These are examples of doctors abusing intersex patient’s trust that need to stop. If you’re reading this you’re already one of the good guys, because you’re already trying to improve yourself.
Thank you.
Do Not Ignore the power imbalance between patients and providers
Patients are often reluctant to assert their interests in the presence of clinicians, whom they see as experts. The higher the stakes of a health decision, the more entrenched the socially sanctioned roles of patient and clinician can become. As a result, many patients are susceptible to “hostage bargaining syndrome” (HBS), whereby they behave as if negotiating for their health from a position of fear and confusion.
Do Not Take Gratuitous Photographs
Scenario: You have a patient with CAIS come in with a hernia in the inguinal canal. You blindfold the patient to protect their privacy, take nude full frontal photographs, and write a scholarly article and publish it on the internet.
Why this is Wrong: This is ethically wrong. Blindfolding someone for a photograph is dehumanizing. Cutting off the face in a photograph is also dehumanizing. We are people, not specimens. This person was phenotypically female, so there was nothing of medical value to highlight in the photo. There was no purpose to take these photos other than to fetishize patients with AIS. Publishing the photos on the internet where they were publicly accessible were also ethically and morally appalling. I will not be posting a link to the offending article.
Do Not have a Surgery First Mindset
Scenario: A patient is 13 years old, and you just informed them that they have Androgen Insensitivity Syndrome. They have a shortened vaginal canal and have internal testis. You recommend an immediate gonadectomy and a vaginoplasty.
Why this is Wrong: AIS is not life threatening, and nothing requires immediate surgery. A shortened vagina should be corrected, only if the patient desires to correct it. Dilation should be considered first before considering surgery. (source). Also, the current thinking is that a gonadectomy should be considered after puberty, so the 13 year old is still too young for that surgery. Additionally, it should be their decision if they even want the gonadectomy at all. The alternative is bi-annual monitoring of the gonads. Just as if you have high risk for other cancers, you would do frequent preventive screenings, you can do bi-annual screenings for gonadal cancer instead of immediate surgery. (source).
Do Not Invite Colleagues and Medical Students to View
Scenario: You have an AIS patient in your teaching hospital, leave them to undress, and return with a few of your peers and medical students. AIS is a rare syndrome, so this is an excellent learning opportunity, and this is a teaching hospital after all.
Why This is Wrong: CONSENT. You need to ask the patient for consent. Not when they’re naked in that flimsy robe. Not casually in passing. You need to take the time and explain what you are planning to do and explain to them that you are truly asking for their permission and give them permission to actively refuse you. I don’t care if it’s a teaching hospital. It is your responsibility to do your due diligence to make sure that your patient is actually comfortable with additional people in the room. Do not make assumptions.
Do Not Be a “Looky-Loo”
Scenario: You are seeing a new patient, and this patient is Intersex. You ask this patient to be naked for an examination. You are an endocrinologist.
Why This is Wrong: This one should be obvious. Why do you need to be naked for a consultation for the endocrine system? What’s next? Do I need to take off my socks to check my tonsils? Stop. Trying. To. Get. Us. Naked. Yes, we’re interesting. No, you don’t need to see us naked. Unless there is a legitimate medical reason to look at our privates, don’t ask. If you think you have a legitimate medical reason, ask yourself if you would ask the same thing of a non-intersex person. If you would, then ask, but don’t be upset if we say no.
Do Not Lie to Patients
Scenario: You have a patient who has AIS, but they’re a young girl, and she’s crying and her mother is crying. You don’t want to hurt them any more, so you tell them a white lie, that she needs a hysterectomy, and schedule a surgery to remove her gonads next week.
Why this is Wrong: If you are lying to your patients, you are not sparing them pain, you are sparring yourself pain. You are delaying their pain so that you don’t have to see it. They will discover the truth 5, 10, 15 years later. They will be devastated. You will have personally destroyed them, not because they have AIS, but because they have been living a lie. Your lie. Your lie is worse than the syndrome could ever be.
Do Not Be Intimidated
Scenario: A patient comes into your practice for primary care with AIS, and asks if you’re familiar with AIS. You say yes. You studied it in medical school, and you’ve had a trans patient before.
Why this is Wrong: It’s ok to admit you are not an expert in a very rare syndrome. Not everyone with AIS will be an expert in AIS, but if your patient is asking, it’s probably because they want to make sure you are comfortable providing care. If you don’t feel like you can provide care, that’s ok, but NEVER refuse care without finding another provider who can provide care. If you just drop us because you don’t feel like dealing with someone intersex, you are a massive douche.
Do Not Use Offensive Terms
Scenario: You know you have a patient with AIS coming in, so you accidentally read a certain trash article from 1953, that is somehow still cited in modern papers, and walk into the examination room ready to have an intelligent and informed conversation using terminology from 1953.
Why it’s wrong: Medical terms change pretty frequently:
Just call it AIS
Ask for preferred pronouns
Don’t make assumptions
If you mess up, apologize. You’re only human.
Do Not Assume Consistent Healthcare
Scenario: I have a patient who is 45 who has AIS and had a gonadectomy when they were 12. They have not received medical care since they were 12 and did not know they were intersex.
Why It’s Wrong: While the provider did nothing wrong in this scenario, it can be a very realistic scenario. Due to unresolved trauma, financial issues, and fear of the healthcare industry, many people who are intersex forgo the care they need. They may skip appointments or not seek care for years at a time.
If you have a patient who is intersex, please do not assume they are able to have their healthcare needs met in their rural town. They may also be unable to afford hormone replacement therapy, or a vaginoplasty.
