Z53.21 is the diagnosis code I dread. When we do our medical charting, it’s the code that we use for: “Procedure and treatment not carried out due to patient leaving prior to being seen by health care provider”. In medical slang we say “left without being seen.”
Over the years, I’ve learned people leave before seeing a doctor for a lot of reasons, such as experiencing a longer wait than they had anticipated. And in designing the PurpLE Clinic as a health home that would address the barriers that sexual violence survivors face when seeking healthcare, creating a practice that prevented Z53.21 situations was a top priority. For the people we were hoping to serve through our clinic, we anticipated that reasons for Z53.21 included people leaving the office because they may have felt too anxious about receiving care after stepping inside, or they may have an addiction, such as heroin, dictating their availability to stay.
But one Z53.21 reason I was particularly focused on combatting, was patients’ fears of having a judgmental healthcare team. This mission was clear in its necessity and urgency because of the lessons learned from our Rikers/Sex trafficking project. In the course of our interviews with trafficked women, a disturbing trend emerged of survivors* recounting experiences of leaving in the middle of their rape exams because of how they felt treated when seeking care.
“God’s Child” was a woman I met on Rikers Island who, among other interactions with chronic violence and abuse had been trafficked in New York City from age 14 to 19. During that time, she recalled having the following healthcare experience:
“When I got raped and I was [asked] what was I doing at the time that I got raped, and I was telling them that I was being prostituted. They were very judgmental. It was kind of like very cold towards my situation…I left. I didn’t stay there to complete my treatment. I just left. I didn’t like the way the social worker spoke to me.”
God’s Child’s chart likely had Z53.21. “Alice’s” chart probably did too. Alice’s trafficker was her boyfriend, who coerced her into selling sex so they would have money to feed a shared heroin addiction. She recounted a few experiences of coming in for a rape exam, but leaving without one—sometimes because she felt dissuaded by staff, other times because she felt ashamed to ask. So when we asked what could be done to improve things, she said:
“…maybe they should start manufacturing at-home kits. So…if you want to do it confidentially…you could just go and buy it. I mean, I don’t know if that would be able to be done, but…I don’t have to walk into a hospital and feel like I’m doing something wrong just by asking…I mean… there are women that get beaten and raped and hurt every day and they feel so guilty and embarrassed and to go in and then feel like you’re being judged by someone that’s supposed to be completely nonjudgmental is very hurtful…”
In one swift sentence, “Alice”– the patient, the sexual assault survivor–had surgically removed the healthcare system from her care to create an ideal solution for post-sexual assault care. Because of the human interactions involved in seeking care. And Alice was not the only woman who made this suggestion. The idea of being able to do rape kits at home to address chronic sexual assault and avoid interacting with healthcare staff was an ideal solution that had was suggested in other interviews as well. And it is jarring for a healthcare provider to hear.
Provider intentionality and patient perceptions of our intentions are not the same: the belief that you are providing non- judgmental care because you intend to, does not mean that a patient perceives this as well.
Although our value, from a patient’s perspective, is in our ability to both communicate and provide care, our medical training largely focuses on the latter: objective, measured outcomes such as board scores – which surgically remove the “human” part of our patients. In a multiple choice exam, we would always select the option that says “Treat the patient with non- judgmental care.” But answering this question in real life means that our intention of providing non- judgmental care must synchronize with the message on our face, body language, movements, and words, or all is lost: our patients are left without care, and providers are left with a Z53.21 diagnosis code.
The stakes are especially high for the patients who are most vulnerable: people who have experienced trauma in their personal lives and compounded abuses in structural institutions, including legal, medical, and social services. To give you an idea of just how much of a distance there is that we need to bridge with empathetic care, “LaShaun”, a survivor of sex trafficking also incarcerated on Rikers bluntly said:
“…forget about prostitution…Just the health field period is scary… because you got all these hundred thousand doctors, and everybody’s got their [white coat] so now it’s like, here’s another one. It’s just like another officer – here’s another one.”
So with this increased awareness of the importance of communicating care to our patients, we did our best to design our PurpLE Clinic services accordingly: we did trauma-informed care staff trainings, we streamlined our intakes so patients did not have to repeat their histories or disclose traumas multiple times, I prioritize meeting patients in the waiting room so that they know their doctor is a human waiting for them on the other end of the check-in process, and when possible, I take referrals while patients are with the referring provider that they trust (perhaps a peer advocate, therapist, lawyer, or case manager) so they know who I am before coming into the office.
So have we been successful in running a clinic without a Z53.21? Technically, yes. In actuality, no. Ironically, cases of Z53.21 started showing up in clinic when I didn’t expect them. But I’ll save those lessons learned for next week.
*All participants chose pseudonyms for themselves