I sat terrified and alone atop a gurney, awaiting the scheduled time for my cystectomy, holding a clipboard with forms to complete as the nurse rushed off to do something else. There was a box to check, next to a caption along the lines of “someone has explained to me the risks and benefits of receiving a blood transfusion in the event that I need one.”
No one had said much of anything to me at that point, so I left it blank, figuring that the nurse would give me the blood transfusion spiel when she had time. But all she said when she saw my form was, “Oh honey. You don’t want something happening to you. Check that box.” I was too tired and hungry and scared to argue. Little did I know that consenting to a blood transfusion would be the least of my problems borne of that traumatic surgery.
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Informed consent is integral to providing high-quality health care, yet it is too often treated as an obstacle — just a box to check before getting on with the real procedure.
Part of the problem is that we’ve all become desensitized to the constant signing of forms in our litigious society. On a daily basis, how often must we check boxes to signal “I agree” or “accept the conditions” of using a particular service, despite the fact that no one without a law degree could possibly decipher what those multipage conditions really say? And yet we check the box or sign the liability waiver for our kids to go to the trampoline park at the mall, understanding that this is part of the price of admission.
We have lost sight of the fact that while the intent of the liability waiver is to protect the trampoline park, the intent of medical informed consent is supposed to be to protect the patient. Too often, those forms are regarded, by providers and patients alike, as though they are an inconvenience — something that takes time away from “more important” things. When visiting a clinic, I’m often handed a clipboard or an iPad with a form that reads, “Dr. (Fill-in-the-Blank) has explained the risks and benefits of the procedure to me” — before I have ever even met them! When I ask to wait to complete the form until I’ve actually met the doctor and had that conversation, I’m sometimes regarded as though I’m being difficult, or at least as though they are doing me a favor.
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But I’m not asking providers to follow their own written policies just to be a stickler. I know all too well what can happen when informed consent is skipped over.
On that day when I just checked the boxes as I was told, 16 years ago, I went into laparoscopic surgery to remove ovarian cysts, knowing only that the cysts would be removed through incisions in my abdomen. No one told me that the surgeon would perform a pelvic exam once I was anesthetized to help determine the location of the cysts, or that an unknown number of trainees would probably perform an exam, too, for their own education. No one told me an instrument called a uterine manipulator would be inserted through my vagina to better access my ovaries.
Did trainees perform an exam? I’ll never know for sure, an upsetting uncertainty. All my medical records stated was that “the vagina was prepped properly.” My other evidence that my reproductive organs were touched during the procedure: As I recovered from the surgery, I was diagnosed with an extreme vulvar sensitivity, a poorly understood condition that results from physical trauma.
The real damage done, though, wasn’t physical; it was knowing that my autonomy had been violated by people who were supposed to care for me. I live with those scars to this day.
On Aug. 8, Wisconsin Gov. Tony Evers signed into law a bill that I’ve been advocating for since 2018. It will require explicit, written informed consent for educational pelvic exams. This is a huge step toward elevating informed consent, and formalizes a directive issued by the U.S. Department of Health and Human Services issued in 2024.
But there is still work to be done. Other states should follow suit. And even in Wisconsin, the law does not apply to how a uterine manipulator is used, or offer guidance on exactly how to train medical professionals to conduct informed consent in a way that is meaningful to patients.
I am happy to report that I had a similar surgery nine years later with a different provider, from which my recovery was much smoother. To be sure, it helped that I knew what questions to ask — I learned the hard way during my first surgery. But I believe that the way she integrated the consent process into the procedure made all the difference. There are three things all providers should do:
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1. Actually discuss forms together. Informed consent should function more like closing on a loan— the provider should summarize each page orally, in plain language, before expecting the patient to sign, and the patient should wait to sign until the forms have been sufficiently explained. Providers should remember that a part of the procedure that is tangential to them —like a pelvic exam prior to a cystectomy — may be highly significant (and not at all obvious) to the patient. Medical trainees should have ample opportunities to observe and participate in effective models of informed consent to develop their competence.
2. Be transparent. Prior to my successful surgery, my surgeon previewed how many people would be in the room and what their roles were. Providers should be specific about who is doing what, including trainees, and record it in patient notes. Patients should be told that they have the right to alter consent documents; for example, they may refuse to allow trainees to be involved in their care. It’s important to mention that many patients are receptive if they are asked respectfully; for example, one survey indicates that 62% of patients would allow an educational pelvic exam.
3. Timing matters. Conversations about procedures should occur while patients are still clothed and feel comfortable. For a big event like a surgery, informed consent should begin during the pre-op appointment. Patients should be able to view and discuss any forms they will be asked to sign well in advance, not just on the day of the surgery when fasting or nerves make it difficult to process information.
I do not believe that anyone intentionally violated my bodily autonomy when I had that traumatic surgery. And that’s exactly the problem: Even with the best of intentions, it’s all too easy for providers to cause lasting harm by devaluing informed consent. By reframing consent as central to effective care and prioritizing it in medical training, it’s possible to earn patient trust and better outcomes. At a time when many Americans have grown skeptical of medicine and are opting out of health care, doing so is more important than ever.
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Sarah Wright is a science teacher in Madison, Wis.