Conscientious Objection, Intersex Surgeries, and a Call for Perioperative Justice

I remember when I first learned that folks in my communities (black, indigenous, femme, trans, intersex, queer, poor, and disabled communities) were protesting a hospital where I would work during my residency program. On October 26, 2017 (Intersex Awareness Day), the Intersex Justice Project (IJP), an intersex advocacy group led by people of color, organized a protest outside a children’s hospital in Chicago.1 It would be the first of many protests organized by the group to demand that this children’s hospital stop medically unnecessary surgeries on intersex children. Although I was not technically employed by this particular children’s hospital, I felt ashamed that surgeries deemed harmful were occurring at a hospital through which I would rotate during my anesthesiology residency. I also felt afraid that I would be asked to provide anesthesia for one of these surgeries. As a black, queer, feminist, cisgender woman, I am a part of several communities that have bore the brunt of medicalized violence. I am well versed in medicine’s troubling tradition of medical experimentation, pathologization of racial, sex, and sexual identities, implicit bias and a lack of cultural humility when caring for marginalized communities, and forced sterilization of women of color, poor women, and disabled women.2 In fact, part of what called me to become a doctor in the first place was to prevent the use of medical knowledge to further marginalize and harm folks. This stark contradiction between my core political values and the possibility of aiding in one of these surgeries left me feeling ashamed and conflicted. This prompted me to seek out more information about intersex justice, educating myself about the lifelong physical, emotional, and psychological impacts of these harmful surgeries. The more I learned about intersex justice, the more the feelings of shame turned into a deep desire to be accountable and to make meaningful change. Intersex is an umbrella term used to describe people born with sex characteristics that do not neatly fit typical notions of male or female. Some studies have found intersex people to constitute 1.17% of the population, making the intersex trait as common as twin births or people with red hair.3 While many in the medical profession use the term “disorder of sex development” (DSD), only 3% of adult intersex people self-identify with this term.4 Therefore, I will use the term intersex throughout this text. Intersex people face barriers and inequities when accessing health care. Up to 80% of intersex people have changed their care after experiencing providers who3 are not educated on how to appropriately care for intersex patients, use stigmatizing or out-dated terminology to address intersex people, or exhibit intersex people’s bodies as a “medical curiosity” (eg, taking pictures of intersex patients genitals or performing unnecessary genital examinations). Based on these negative experiences, the National Institutes of Health (NIH) formally designated the intersex community as a health disparity population in 2016.5 While intersex people experience barriers to quality care, the performing of medically unnecessary, so-called genital-“normalizing” surgeries endures as the most salient issue of contention in both the medical and intersex justice communities.3 These surgeries are most commonly performed on infants and children, well before they are old enough to consent. So, why do these surgeries exist in the first place? The theory behind genital-“normalizing” surgeries was that an intersex child who is raised from an early age in a particular sex (with surgically imposed, “normative” genitals to “match” that sex) will develop the desired sex identity and have positive psychosocial outcomes. These surgeries also tend to assume that the intersex child will grow up to be heterosexual and prioritize penile-vaginal intercourse. No evidence indicates that intersex people who have had genital-“normalizing” surgeries experience less body and gender dysphoria than intersex people who have not had these kinds of surgeries.6 What we do know, through personal accounts from people with intersex traits, is that physical and psychological risks associated with these surgeries include sterilization, loss of sexual sensation or function, life-long hormone replacement therapy, increased risk of suicide and depression, and multiple painful and invasive surgeries that often continue into puberty.7 These psychological and physical risks have led human rights organizations around the world (including the United Nations, Human Rights Watch, and Physicians for Human Rights) to advocate for the delay of irreversible and profoundly life-altering, elective surgeries until people with intersex traits are able to meaningfully participate in decision-making processes. Why does this ethical issue matter to anesthesia clinicians? First, it is important for anesthesia clinicians to listen when a group of patients collectively tell us that we are harming them. As care providers who embrace “doing no harm,” it is imperative that we heed the warnings of our intersex patients to prevent the perpetuation of lifelong harm. Second, surgeries on intersex children do not happen without an anesthesiologist. By abstaining from providing anesthesia for genital-“normalizing” surgeries, anesthesiologists could prevent them occurring. Third, although anesthesia is generally thought to be safe for infants and children, the long-term implications of anesthesia on the developing brain are unknown.8–12 So what can doctors do to advocate for intersex-affirming care? Here’s what I did. I listened to intersex communities and advocacy groups. In addition to the IJP, there are other organizations such as InterAct and Transgender Gender-Variant & Intersex Justice Project (TGIJP), to name a few, that advocate for the legal and human rights of people with intersex traits. These intersex and trans-led organizations empower and center the voices of intersex people and provide teaching resources for nonintersex people. I educated myself and others about the barriers to quality and affirming care that intersex communities experience. I used my Accreditation Council for Graduate Medical Education (ACGME)–required Quality Improvement (QI) Project as a means to start a conversation about intersex identities and providing affirming care at my workplace. The goals of my QI project were to educate my coresidents, attendings, and colleagues on intersex-inclusive care through a Grand Rounds presentation, raise important ethical questions around genital-“normalizing” surgeries on intersex children, and finally inspire folks to organize against and resist health-based injustices against intersex communities. While my last goal of organizing a task force of providers to either implement intersex affirming policies or collectively object to providing anesthesia for genital-“normalizing” surgeries on children was not actualized, even the act of raising awareness of this issue was critical. So what happened on my pediatric anesthesiology rotation? During my first pediatric rotation in my Categorical Anesthesia-2 (CA-2) year, I did not feel empowered enough to live my politics at work. I instead made my way through the 2-month rotation during the busy winter season, worried daily about what my assignment would be the next day. Thankfully, I did not get assigned to any cases with genital-“normalizing” surgeries on intersex children. I was better prepared during my 1-month pediatric rotation in my CA-3 year. I discussed my wish to conscientiously object to providing anesthesia for intersex surgery cases with my program director. She told me about a policy that allowed employees to request an exemption from participating in an aspect of a patient’s care or treatment if it comes in conflict with the employees’ cultural or personal values or religious beliefs. I worked with folks in intersex communities and intersex advocacy organizations to draft a letter. This letter included a list of the kinds of cases from which I would like to request exemption. This time when I looked at my schedule for the upcoming day, I was no longer anxious because I was prepared to let the coordinator know if I needed to be reassigned. While knowing I had the right to reject providing anesthesia for a surgery to which I ethically disagreed with felt better, I still struggled with knowing that a potentially harmful surgery was being performed in the operating room next to mine. This feeling of professional accountability led me to ask broader ethical questions about the role of the anesthesiologist in advocating for social justice in the perioperative setting. Because we are given permission to induce anesthesia and take patients who typically have autonomy or decision-making capacity and render them completely vulnerable, are we uniquely responsible to advocate for them while they are under anesthesia? Professional accountability requires us to take serious issues of justice. To correct the perioperative colleague when they use the wrong pronouns during sign in. To speak back to a perioperative colleague who is making disparaging racialized and gendered remarks about a patient’s body habitus. To ask if consent was obtained before the medical student performs a vaginal examination on a patient under anesthesia. To take the extra time to use a translation service during the placement of a labor epidural. To advocate for postponing of an elective surgery on a child who is not yet able to consent. What would it mean for our field if we took serious questions of justice in our anesthetic management? I think it would mean a very different scope and impact of practice, that perhaps would make us better, more humanistic, physicians. DISCLOSURES Name: Nwadiogo Ijeoma Ejiogu, MD, MA. Contribution: This author conceived and wrote the final manuscript independently. This manuscript was handled by: Edward C. Nemergut, MD.