S02 Episode 3: The Guidelines

26:36So could you describe how you first met your anesthetist and how the conversation went? We were in the ward beforehand, and I had already changed... Susanna and the doctor walk through her surgery, slowing down once they get to the testing of the block. The first thing Susanna wants the anesthesiologist to understand is what's going on from the patient's perspective. I was lying on my back looking up into the face of someone who was convinced that the block would be working. He was the expert, the person with authority. And I would say that's a really difficult situation in which to go against authority.

27:15The thing that led me was the anesthetist conviction that all was well. Now Susanna switches from explaining what's going on inside for the patient to considering what's going on inside for the anesthesiologist. I appreciate the need for confidence. When you go to place a spinal injection, you need to believe you're going to get it right. However, I think that once that's been done, the anesthetist needs to switch very quickly from being the technically adept wizard placing the block to a mode of patiently seeking approval when testing. A doctor needs to be confident to place the block. The same way you need to be confident when parking a car.

27:57If you think you're going to mess up, you will. But the confidence that's crucial for placement is harmful for testing. A doctor who assumes his block is working may ignore red flags that it isn't. When Susanna first told me about this, I was like, wait, wait, wait, just tell me how, at this very first talk, you'd already arrived at this understanding. She'd imagined herself into the anesthesiologist's side and so fully inhabited that role that she determined there needed to be a deliberate cognitive shift from confidence to doubt. So it has to be a conscious effort to work on the basis that the block is not adequate until proven otherwise.

28:42Don't assume the block is working. Assume that it isn't. This has become a truism in the field, and as far as I can tell, Susanna is the source of it. Later, Susanna would build on this with another catchphrase You test the block, not your block Anesthesiologists are judged by their blocks It's easier to admit the block has failed than to admit your block has As Susanna narrates through her surgery the doctor occasionally offers a question that moves the two of them to the next lesson Sometimes the British understatement is comical In retrospect, do you think the anaesthetist could have handled it better?

29:27Probably.

29:31Now Susanna lays out exactly how the anaesthesiologist could have better communicated with her once it was clear that she was in pain. Importantly, he could have changed the way he presented the option of general anaesthesia. A lot is said about choice, and I would say that women should be able to express their preferences on all available choices in childbirth. But lying open on an operating table, I was not in the best position to make the best decision for myself. Many people might hesitate to say this, anticipating a flare-up. What? You're saying that a woman can't always make her own best decision?

30:12do you know what a slippery slope that is in reproductive health? But Susanna's not advocating for curtailing bodily autonomy. If you feel the pain of major surgery, physiologically you experience that as life-threatening. The stress response can shut down your ability to make decisions. In that case, the doctors need not to stand there while you writhe. The doctors can't decide for you, But they need to help you decide. It would have been more helpful to me if, rather than putting the onus on me to handle it, the anesthetist had said, I'm sorry this is happening. But if you can feel this, it is very likely to get worse.

30:56And in these situations, we recommend switching to general anesthesia. I can give you general anesthesia if you really want it. It's not the same as saying, I can see you are suffering. You don't have to suffer. I recommend that you go to sleep. The doctor needs to give the patient permission not to suffer. At the time of the talk, the fear of General Anesthesia wasn't really on Susanna's radar. And even when she learned of it, it was never at the center of what she addressed. Basically, it seemed clear to her that these days General was safe and that the messaging around it needed reframing. The Susanna of the video looks down at the notes in her lap.

31:38She summarizes her lessons and winds up with a broadly applicable one. To not be believed is to add insult to injury. Susanna Stanford, on behalf of the OAA, thank you so much for sharing your story with us. Thank you. The presence of the doctor, it's a little paternalistic, as if a patient experience must be filtered through an authority in order to have authority. But at the same time, it reflects Susanna's collaborative approach. Susanna gets it, one doctor told me. She's supporting us, not battling us.

32:22That first talk was in 2015. After that, Susanna gradually went from patient to expert, traveling to give talks, joining steering groups and national committees, There was no money in it. It had to happen on the sides of her life. Yet in a way, it became the center of it. For the next 10 years, she devoted herself to solving this problem.

32:51Within only a year or two after that first talk in 2015, Susanna recognized that just talking wasn't enough. It became apparent to me really quickly that you could influence individual care like that. It would change. They would make a decision to change their practice, and that would be in their practice the next day. Indeed, a survey had found that over half of doctors changed the way they practiced after hearing Susanna speak. But I was recognizing that I felt that there was system change that you needed, and that's just a completely different ballgame. System change, what does that even mean, to change a system?

33:33It's abstract, it's academic. One way to understand it is to use an analogy from tech. Susanna had solutions, but she had to scale them to reach more people. She couldn't talk to every doctor personally. How could she scale her solutions? Susanna thought about this for a while, and eventually what she arrived on was guidelines. As far as she could tell, there were no national guidelines for managing interoperative pain during cesarean. Seemingly none, anywhere. If there were guidelines, that would change the system, right? Could there be guidelines? Susanna put the question to a senior anesthesiologist.

34:16And it was just an outright no. That would be impossible to make happen. Predictably, some of the reluctance was around having a standard that would make it easier for patients to sue Just as much of it was about not wanting to be told what to do But Susanna kept at it, and eventually people agreed Guidelines, let's do it A group was formed Their first meeting was in December 2017 But from the start, the work was slow In the literature, there was a lack of consensus on a lot of this Doctors like to build evidence Some members of the group feared going forward without perfect evidence Susanna feared waiting for it Because I was always kind of running a tally of how many women could have been harmed And I was thinking, but these women, you know, they're going past And I'm not acting fast enough for them And I need the organization to help me out here and act fast enough for them And this isn't happening As the process of researching and writing the guidelines dragged on one year, and then another, and then three, and still no published guidelines, Susanna grew frustrated.

35:29And then someone showed her a study she'd never seen before, an older one about lawsuits, including those brought by patients whose anesthesia failed during cesarean. What it showed Susanna was that doctors had known, for years, that this was causing patients serious harm, enough that they'd been suing about it. They had known. She says it felt like a betrayal. When I started raising concerns, I very much felt like I was the first person to be raising this. And I was absolutely allowed to feel that this was quite new to them. And it wasn't new to them at all.

36:18Eventually, someone else pointed Susanna to another document, this one published in 2012 by the Royal College of Anesthetists, that established it was acceptable for up to 20 % of patients who had emergency C-sections to experience pain. Not like, 20%, that was our number last year. Jesus, we need to do better. Just 20 % is a reasonable expectation for the number of patients who will feel this surgery. How's that for perfect evidence? Evidence that pain had been not just noticed, but banked on. It all just burned. What does it say about our attitude to women and women's pain that it's okay? and okay you know again stop think try and understand how did this happen try and understand why you know like I pull myself back and go okay why what is it and was it that okay well you know women have babies and childbirth is the most painful thing that people women normally experience And did that mean that somehow, somewhere, there was a sense that intraoperative pain couldn't be any worse and that it was equivalent and that having babies was expected to be painful?

37:46And so therefore, if you had pain during surgery, having a baby, well, it was still kind of childbirth. And was that why it was allowed to be the case that we tolerated pain? Because that's the only way that I can possibly explain it with good intent. I mean, I just feel like even somebody who's never given birth understands that having somebody cut you open, that is more painful than childbirth, right? So there's still some mental accommodation that's happening. I don't quite understand it yet. I think it could be called normalization of deviance. Normalization of deviance A phrase used in patient safety circles To explain how things that are clearly wrong Come to be accepted as normal And on some level Maybe the reason for pain during cesarean Is as basic as that Having babies hurts Vaginal birth hurts So it's okay for C-sections to hurt as well That's how a doctor might square the pain and why a patient might believe she must tolerate it.

39:09Finally, in 2022, the guidelines were finished and published in a leading anesthesiology journal. It made me cry. They named me as the second author. And that was, yeah. The guidelines are not a simple checklist, more like a short chapter. They start before the surgery even begins. When you meet the patient, you set expectations about pain, which means that you talk to her about the sensations she may feel even if her block is working properly, as well as the possibility of it failing. You assure the patient that there are ways to address pain. You talk them through with her. You present general anesthesia as one of a list of options, not as a last resort.

39:56Next, there's a lot of advice about testing, including which test you should do. That cold spray thing is discouraged, but the recommended alternative, light touch with cotton wool, forgive me, this does not sound robust. But there's also an instruction that seems very useful to know, which is, don't go ahead with the surgery if a patient can do a straight leg raise. The guidelines continue, underlining the importance of record-keeping and follow-up, and toward the end, offering some sentences that speak to the broader implications of Susanna's work. Quote, A woman must be listened to, and her account of events accepted as her genuine experience.

40:40An explanation as to the possible reasons for interoperative pain should be offered. A woman must be listened to, and also she is owed an explanation. If you write these things down in a document marked guidelines, That goes a long way to making them not just ideals, but standards. Things that a doctor or institution must do or be judged as negligent.

41:12By the end of the year, the guidelines were on the list of the most downloaded articles for the journal. They sent Susanna a certificate for this. She hung it on her fridge. Let's watch her now Sticking it there with a magnet And then cut to a hospital Ah, it feels good to be back there And it's such a fancy one too Cedars-Sinai in Los Angeles Where an obstetric anesthesiologist Who's read the new guidelines thinks We need something like this in the U.S. This doctor happens to be the head Of the obstetric committee Of the American Society of Anesthesiologists With the help of a group he gets statements that provide guidance for U.S.

41:54doctors written. When the guidance is released, it's accompanied by an editorial that declares, quote, we can and must do better. Susanna had wanted there to be learning, and here were her lessons, laid out in a form that could be adapted by others. It was a major contribution. But in the very same issue of the journal that contains the guidelines, Susanna published a second paper that maybe matters even more. It began when the journal's editors contacted Susanna and asked if she'd write a response to a new study. This alone reflects Susanna's unusual stature in the medical community. Typically only doctors get assignments like this.

42:40Susanna said yes. And then she received the study. and of course it's an awful lot easier to write something if you're agreeing with people and I realized really quickly that I was going to be disagreeing with them. The study was the first really big attempt to calculate how many patients were feeling pain during C-sections. The authors had gotten their data from older studies that already existed, studies about block failure. But the problem was, in every study, failure had been defined by doctors, not by patients. Everybody had been making the same mistake. Everybody. All of the authors of all of those 54 studies.

43:22Not one had been asking the patients. No one was asking the patients. It was a simple but profound insight that would reshape the entire direction of research in the field. What you needed to do in the research was the same thing you needed to do in the operating room. Ask the patient whether she is in pain. Ask the patient what she feels. Medicine relies on research. What if that research were grounded not just in the measures that matter to doctors, but in the ones that are important to patients? What if women's individual and subjective experiences of pain were collected and validated with the same seriousness as any data set?

44:09Susanna's response informed the first-ever national study in North America where doctors asked patients if they felt pain during their C-sections. By the time it was completed, almost 15 years had passed since Susanna's surgery. The work she's done during that time has come at a cost. I had to keep it fresh. And I had to... I had to create a different version of myself. a version of myself that could stand and speak because I'm not naturally someone who would ever stand up on a stage you know like at school I you know I moved the set I never public spoke I never like I hated reading out loud in class at school I had to create a version of myself that could stand and speak.

45:15And all the time I was having to kind of censor myself in how I was doing it. You know, that whole thing of the woman, she has to be likeable. You can't speak with authority without being accused of being arrogant or, you know, strident or bossy or any one of these awful words that gets... I mean, you know, there's no winning. But the cost, you know, like every time, like early on whenever I spoke, I would be wrecked for like a week afterwards. I'd be exhausted, emotionally draining. And obviously I got better at it and I spoke less about my own experience and more about the research. and I got more comfortable in it.

46:06But you know what? Every time I speak, I still start with the story. I still start with three minutes of what happened with me. And I keep that to a script because it's not active recall. And while it's on a script, it protects, that is protective. But the reality is that I have kept this live, and I am tired. I'd started out wondering how Susanna had taken on this problem. But at some point my question shifted to what would make it possible for her to stop. I went home to New York, and several months later, I got an answer. That's after the break.

47:11It was the weekend of another conference. This one called the Elevate Summit. a few dozen people gathering in Pittsburgh and online to talk about patient-centered approaches to pain during cesarean. I would be joining as a reporter. Susanna would be participating online. And Heather Nixon, the doctor from Chicago, would be there in person. The two of them would be meeting for the first time, and I wondered if they would see in each other what I saw in them. To me, they were mirror images of each other, identical cousins, the proper Brit and the buoyant American. The conference kicked off with a video Susanna had made.

47:52Good morning. I would like to start by saying how pleased I am that this is... But some of the group seemed to know who she was already. It wasn't long before Heather was describing some of the changes she'd made at her hospital. People don't believe in pain scores. The reason I started doing it is because on our unit, we had a bunch of misses, where we found out after the fact patients were having a lot of pain or had really horrible experiences. And Susanna was back-channeling me on WhatsApp. I like Heather. She's got it spot on. And connecting with her in the room. I love what you've just described, Heather.

48:26And the reason I do is I'm picking up on what makes it work. The goal of the conference was to set priorities for action, to plan out how to solve this problem over the long term, and to think about all this from the perspective of what matters most to patients. There were all kinds of suggestions. like prenatal education. Patients should know that this happens, that it's a risk like any other, like preeclampsia or gestational diabetes, and that if it does happen, they don't have to endure it, that doctors can treat it, that they will. On big pieces of white paper stuck to the walls, someone kept track of ideas for a research agenda.

49:06The group met over two days, and at the end, everyone went around and gave their key takeaways. Susanna asked to go last. And Susanna. So this is quite emotional. It's been a huge... Sorry, I'm going to take a breath. There is a quote that many of you will know from Margaret Mead, who said, never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.

49:54And this, by the way, the child that got me into this. Susanna's son, Tristan, entered her square on the screen. Dark hair, soft smile. and he's he's going to be 15 this year so this is and he's very sweet and look at him um this has been a huge part of my life for almost 15 years and I have had to keep going because there was never a group to take it and so in this room you have that group that enables me to pass the baton on. And I'm so grateful for you all because I have so much hope for that progress happening. So thank you. Yeah, come on, go do it. Thank you for sticking with it and bringing it to everyone's attention.

50:56It was the first time she'd ever done anything like that, Susanna told me. She'd never even shown a picture of Tristan before. She'd always been very clear that this was not his story.

51:11As for Susanna's own key takeaway? Of everything I heard, what made most of an impression was Heather Nixon's work. And that was because it was something that was already in progress. It was something that's already happening. The group had convened to decide what to do next. But here was Heather, already doing it. She wasn't the only one at the summit taking measures to prevent pain during cesarean, of course. But she'd come up with a novel system she told the group about. Something she said seemed to be working. And the room was interested. I just want to take my hat off to you on this. I think that's an amazing intervention that you were able to accomplish that culture change.

51:56What exactly was Heather up to at UIC? Some other things we did is we eliminated the word pressure in the operating room. If the nurses will report to me if the residents are asking if she's just having pressure. Because I'm like, you will never ask that to my patient. You'll ask her if she's having pain. Susan, she actually watched me in the operating room. She came and visited our site. What I saw in the operating room with Heather. We go back to the labor and delivery floor. Back to our medical drama. and see what happens when Heather tries to put solutions into practice. That's next on the final episode of The Retrievals.

52:43The Retrievals is written and reported by me, Susan Burton, and produced by me, Julie Snyder, and Ben Phelan. Julie edited the series. Ben did research and fact-checking. Be sure to sign up for our newsletter, where each week we'll share more reporting from the show, listener stories, and reading lists. Go to nytimes.com slash serialnewsletter. Music supervision, sound design, and mixing by Phoebe Wang. Original music by Dan Powell, Fritz Myers, and Nick Thorburn. Additional music in this episode by Marian Lozano. Carla Pallone composed our theme song, and it was remixed by Dan Powell. Additional production by Mac Miller.

53:23Additional mixing by Katherine Anderson Editing help on this episode from Jessica Weisberg and Jen Guerra Our standards editor is Susan Westling Legal review from Dana Green The art for our show comes from Pablo Delcon and Eric Tanner The supervising producer for Serial Productions is Inde Chubu Additional producing comes from Mahima Chablani, Jeffrey Miranda, and Corey Beach at the New York Times And Sam Dolnik is deputy managing editor of the New York Times The conference Susanna and Heather attended, the Elevate Summit, was co-chaired by Grace Lim. A report on the summit's recommendations for patient-centered anesthesia care for cesarean is available online.

54:01Rachel Summerstein is the summit participant who suggested educating patients that pain during cesarean is a risk like any other. She is the author of Invisible Labor, the untold story of the cesarean section. The educational video in which Susanna appears is used courtesy of the Obstetric Anesthetist Association. The guidelines Susanna worked on, the Obstetric Anesthetist Association guidelines, were published in the May 2022 issue of the journal Anesthesia. The U.S. statements on pain during cesarean are available on the website of the American Society of Anesthesiologists. The committee that wrote them was chaired by Mark Zakowski.

54:38Special thanks to

54:50The Retrievals is a production of Serial Productions and The New York Times.

55:09Thank you.