The Retrievals S02 Episode 3: The Guidelines

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So, I'm going to ask just this room at this moment: how many people in the last month have had a patient who's had severe interoperative pain?

Previously, on the retrievals.

Okay.

So, this is not rare.

We have a group of experts in the room who clearly are experiencing this on a daily basis, and we're just beginning to talk about it.

I mean, even the sight of the logo made me angry.

Walking in the hall made me angry.

I couldn't believe I had to be there and couldn't believe I was back.

The mental health complications I have women who are still having suicidal ideations years later,

their birthdays of their children become nightmares.

The impact is so severe.

From Serial Productions and the New York Times, this is the Retrieval Season 2, The C-Sections.

I'm Susan Burton.

And that's me, actually, in this episode's opening shot.

Oblique view, you're mostly seeing a blonde ponytail.

I'm turned toward the window on a plane.

The reporter character.

On TV, the reporter character is typically investigating something.

And this is an investigation, but it's an investigation of a deviant practice, surgery without adequate adequate anesthesia, rather than of a traditional crime.

Now we see the reporter, Ni, waiting at Heathrow for the tube into London, now emerging into a dark spring night, tugging wheeled luggage down a bumpy stone walk.

There's nothing about this that reads, hospital, and that's deliberate, because we're going to be outside the hospital for a lot of this episode.

This episode where I tell you about Susanna.

And what is spectacularly interesting here?

Here we go.

So what's interesting here is the...

Cut to a hotel room where Susanna Stanford and I are meeting in person for the first time.

I'd come all the way to London to meet Susanna because it seemed to me she devoted more attention than anyone in the world to solving the problem of pain during cesarean,

despite the fact that she's not a doctor herself.

I'm not a spinostetric anesthesiologist.

I'm just a regular person off the streets, so to speak.

Susanna and I are going through a folder of papers she pulled out of her backpack as soon as we came up to the room.

The folder of documents handed to a reporter, that's a trope.

But there's a twist here.

It's also feminine.

The room itself is tiny, atop a narrow flight of stairs.

We spread the papers on a crisp white duvet.

Many of them are medical journal articles about pain during cesarean.

Tell me about what we're looking at right here.

So this, just to give you a sort of sense of how

accepted this was,

this is an editorial from 2006 in the International Journal of Obstetric Anesthesia.

The editorial by a British doctor was about the necessity of keeping good records in case you ever got sued by a woman who complained of pain during her cesarean.

Let me read you the opening section.

It was all so simple in the old old days.

You simply injected the local anesthetic down the epidural, warned her that she'd feel a bit of pain, and told the obstetrician to get on with it.

And then things began to become more complicated.

First, women began to complain more,

no doubt fueled by general changes in patients' attitudes as they made the transition from passive recipients of healthcare to consumers.

Isn't that

doesn't that just tell you so much?

I mean it's just like it's just like well the women started speaking up.

Damn it those wretched women started complaining about pain.

I just I cannot believe this.

This is 2007, 2006?

2006.

It's not the 1950s.

Susanna is one of the patients who wrote to me after hearing season one of the retrievals.

Her email was unusual.

She understood this was happening a lot, way more than most people knew.

She included links to papers she'd written about it, articles that had been published in prestigious medical journals.

At first this confused me.

Though she wasn't a doctor, had she done a master's in public health or something?

No.

I started reading what she'd sent.

Then I started doing my own reading in the medical literature.

And what I observed was that a paper Susanna had written, describing her own painful cesarean, was cited in all of these other papers.

Stanford and Bogod 2016 was the citation.

Stanford and Bogod, Stanford and Bogod, again and again.

Who was this Stanford everyone was talking back to?

To me, it seemed like these papers were telling a story, and Susanna was where it began.

I called her up.

And now here we were a few weeks later in London.

Mixed in with the published articles Susanna has brought with her are two essays she's written expressly for our meeting.

Why do so many women feel everything during cesarean delivery?

Reads the heading on one of these printouts.

Why isn't it better known?

Why isn't pain recognized?

So this,

when we were speaking, the first time we spoke, And the ideas of different things were coming together and it was like watching a pinball machine because there's just so many layers.

So before meeting with you this time I was like right I'm going to try and figure out like a structure to be able to explain the different layers and I think I have seven and a half thousand words which by my calculation would take about an hour and a half to go through.

Susanna has divided her essay into behavior, system, and culture.

I'm interested in all of these layers, but I want to start with a different one, the personal.

She'd taken this problem on, and she was the mind behind some of the essential solutions to it.

But she'd become that mind because of something that had happened to her body.

How many of us women, by the way, have devoted our minds to suffering originating in the body?

If it's all right with her, I want to start with that.

We move a writing desk away from the wall, sit on either side of it, and begin.

In 2010, Susanna went to the hospital for a scheduled C-section.

Her first child had been born vaginally, but with this pregnancy, the position of her placenta posed a risk.

Susanna changed into a gown.

A couple hours later, she was wheeled into the OR and an anesthesiologist administered a spinal block.

Then he tested to see whether her block was working.

There are a variety of ways to do the test.

This anesthesiologist sprayed fluid onto Susanna's skin and asked, can you feel the sensation of fluid on your skin?

Or can you feel that the fluid is cold?

And I just couldn't tell.

The anesthesiologist repeated the same test and the same question multiple times.

It was very clear to me that I was not answering the question correctly.

And I'm the sort of person who likes to answer questions correctly.

Susanna was lying on a table, looking up at the anesthesiologist.

She was aware the room was full of people people who were waiting to begin.

She felt embarrassed by the amount of time she seemed to be wasting.

The anesthesiologist asked again if Susanna was ready.

This time she said yes.

And

I knew

I had given the wrong answer when I felt the first incision.

And

that felt like I was a beanbag being opened up.

Susanna stopped the surgery three times.

Initially, I was offered entinox for what the anesthesiologist referred to as my anxiety.

And I remember being outraged by that.

And I emphasized that I really could feel.

Then the anesthesiologist administered an opioid, which did nothing.

And I was apologising profusely for kind of inconveniencing them.

by asking them to stop.

I'm so sorry.

I'm so sorry.

I mean, it's entirely crazy.

And I couldn't, you know, it took me quite

years to understand that this was just everything in my system geared towards placating them.

It was a survival response.

The anesthesiologist did offer Susanna a general anesthetic.

But he said it was possible to give me one if I felt that the pain was too much.

And the way that it was worded made me feel like I was expected to cope and to manage the pain.

So I tried.

Susanna gripped her husband's hand.

She told him, do not break eye contact.

She'd gone into this surgery expecting to see her son born, and she was holding on for that.

But the pain was so much more than normal labor.

The pain was indescribable.

Finally, Susanna's son was delivered.

But then

something that felt like a blunt instrument was being run around inside me, and I just couldn't cope.

And my eyes shot and clicked straight to the anesthesiologist over me and he said, it's going to be another 20 minutes.

And I asked for the general because I couldn't take it anymore.

And when I opened my eyes, my husband, bless him, had sat himself right where I would see him straight away and he was holding the baby in his arms.

And

I think the the only thought that was in my head was that we were both alive.

Three days later, Susanna left the hospital without any acknowledgement of her suffering or an explanation for what had gone wrong.

So when the community midwife came to visit me,

I tried to say something about, you know, the operation had been a bit traumatic.

And she went, oh, never mind, dear, the baby's all right.

There's all the batters.

And then my six-week check with my doctor, the family doctor, you know, I'm sitting there.

I remember filling out a questionnaire, a postnatal depression questionnaire.

And I literally went down it thinking, it's asking me the wrong questions.

This isn't what's wrong with me.

So by then, I'm aware that something really feels wrong with me, but those aren't the questions.

Because I knew I wasn't okay.

There seemed to be no precedent for Susanna's experience, no tool to address it.

She wondered if the the fault lay with her.

If, because she'd said she was ready to begin, she was responsible for her pain during surgery.

The change in Susanna was apparent to those around her.

Mommy, after Tristan was born, you were really ill, her older son, then three, said to her one day.

They were holding hands walking down the stairs.

But you're okay now.

Susanna wasn't.

She'd just gotten better at masking it.

She felt numb, disconnected, and when when Tristan was 10 months old, she went back to see her family doctor.

So I go back and I say that I'm having flashbacks, I'm finding it difficult to re-engage with life, and that I just want to know what's going on.

And

I said the anesthesia hadn't worked.

And she looked really perplexed.

And she turned and she looks at her screen.

She brings up my records.

And over her shoulder, I can see the discharge note.

Routine Cesarean, regional,

regional.

These notes did did not reflect that Susanna's block had not worked, that she'd been in pain, that she'd ultimately been given general anesthesia.

Susanna's doctor wrote to the hospital, and in return, she received a letter that said Susanna had been conscious and apparently comfortable during her son's delivery.

I mean, conscious was a bit binary.

It was obviously binary, and yeah, okay, I was awake at the time it was delivered, but comfortable, no way.

And, you know,

the anesthesiologists knew I wasn't comfortable.

They were like, who are we kidding?

Another exchange of notes ensued.

I just, I didn't want the hospital to think we could be so easily dismissed.

So, although I wasn't going to sue them, there was a bit of me that went, well, how dare you?

This time, the anesthesiologist himself replied.

So he said, I'm sorry to hear that there were questions that remain unanswered.

And there was an invitation to go in to read to discuss events with him.

But my response to reading that letter was to be physically sick.

And I decided against that.

Susanna felt she'd come to the end of the line with the hospital.

And the funny thing is, the great irony is that that was the best thing that happened.

Because had they been honest, I would have walked away.

And instead,

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Susanna found herself starting to think about the surgery in a new way.

Not just flashbacks, but trying to unpack it.

One afternoon, she and a friend who'd also had a C-section, Claire, were watching their children play outdoors.

By then, she'd had two kids and I had two kids and our big ones are bouncing on the trampolines, and the babies are next to us.

And I said, I was trying to understand there was something wrong with the testing of the block.

And the reason that I got to that was that I'd, when I'd been turning it over and over in my head, I'd kept coming back to the same thing, which was it was just extraordinary that I'd allowed the operation to start when I was not sure.

But then I was just thinking, well, maybe what was if the test wasn't good enough?

Because I've been really confused by the test.

Yeah, what if the testing's not good enough?

And I said, something hadn't been clear.

And she just sounded, she said, that's really weird.

I found that difficult too.

And I just stopped and I looked at her and I'm thinking, okay,

so she's got tremendous presence.

She's really clever.

She runs a team of like 100 people.

This is no shrinking violet.

Maybe it's not just me.

Before this conversation, Susanna had thought she had only two options.

One, to sue the hospital, which she wasn't going to do.

And two, to move on.

In the weeks that followed, she began to see a third path.

She could make sure this didn't happen to others.

There was a distinct moment when I just thought that if it had happened to me, it had happened for a reason.

Because somehow I could take it on.

If the question of the story is how do you solve a problem, this moment is as important as any insight Susanna would have or action she would take down the line.

To attempt something this big, you need a swell of conviction.

In the beginning, knowing you are meant to do this is more important than knowing how.

And at first Susanna didn't.

But she also knew she was well suited to this.

She was intellectually confident and somewhat of a contrarian.

At 15, she'd been asked to leave her highly academic girls' school.

She was dyslexic, not up to their standard.

This stung, but also accelerated her development as an independent thinker.

In college, she'd studied psychology and in the years since she'd done a variety of work, most recently as a wedding photographer.

She believed that she could find answers to anything she wanted to learn.

Susanna knew she had a better chance of being taken seriously if she could present evidence that this was happening to more people than just her.

Her college coursework had emphasized research design and data analysis, and now at home she wrote a survey.

The survey was 10 questions because that was what SurveyMonkey gave you for free.

She posted the survey on the parenting website MumsNet and waited.

She'd phrased her questions with the researcher's formality, giving the survey an official veneer.

She had no illusions that this was a real study, but it was an original one.

In 2011, when Susanna posted her survey, there was no published medical literature on the patient experience of pain during cesarean.

Outside of Susanna on Mom'sNet, no one else seemed to be looking at this.

Soon she had 150 responses.

Not all of the women had felt pain during their C-sections, but many of them had, and the patterns in their experiences mirrored her own.

In addition to the 10 questions, Susanna had included text boxes where people could write their stories of traumatic births.

It chilled her to learn of the lengths to which some of the women had gone to avoid having to give birth again.

One woman had been sterilized.

Another had had an abortion.

And I knew I would do the same thing.

Not a shadow of a doubt.

There was no way I could go through that again.

The responses confirmed for Susanna that no, she wasn't alone in this at all.

But just reading them was overwhelming.

The idea of doing something with them was not yet something she could handle.

So I printed the whole lot off, put it in a folder, stuck it at the back of my desk.

I just couldn't deal with it.

Meanwhile...

There was something else Susanna was avoiding.

By now, Tristan was a year old, and he kept failing hearing tests.

The doctor said he needed tubes in his ears, otherwise, he'd have trouble learning to speak.

But tubes meant surgery, and Susanna just could not take him in for it.

And it's extraordinary to me, as a, you know, educated, professional mother who obviously wants the best for my children.

I held off medical intervention because I was too scared to take him in.

And it seemed entirely rational at the time.

And it got to 21 months.

And suddenly I had this moment where I realized

if I,

rather than having the shoes in my hand saying, come and get your shoes on, if I put the shoes behind my hand and wasn't looking at him, he didn't.

He didn't know what I was saying.

He wasn't like, he couldn't understand a word I was saying unless he could see my face.

And he was 21 months and he had no speech.

Frightened, Susanna called a family friend who was a doctor.

He referred her to a specialist who, he reassured Susanna, never worked with the anesthesiologist from Susanna's C-section,

which had been part of her fear that it would be the same man again.

And Tristan had the surgery and he started talking 10 days later.

Wow.

But, you know, maternal guilt is awful.

Well, that's what I was going to ask you about.

I mean, how do you manage not beating yourself up over that?

I mean, that must have been a whole process.

Which went on for years because then

his writing reflected the fact that he had lost so much speech as an infant.

So he and I dealt with the consequences for a very long time.

Tristan turned two.

The surveys remained in the drawer, haunting Susanna.

But I was really putting it off.

And then another birthday went past.

And so it was by this point, it was his third birthday.

And another Christmas was approaching, another year end was approaching.

And I was like, I've got to do it before the end of the year.

I've got to do it.

And honestly,

these women's experiences, I'd been told them I had them and I was a guardian for them.

And there was just this extraordinary imperative.

I had to do something about it.

I had to.

I knew I had a duty to follow through.

I couldn't walk away.

Susanna opened a drawer and took out the surveys.

Soon she began drafting a letter presenting her findings.

She lays out her data.

For example, 33.8% of women were confused by the cold spray test.

And she makes sense of it, quote, a test which relies on a question which a third of respondents find difficult to answer is bound to result in procedures going ahead when they should not.

And she makes clear where she's coming from.

I have never blamed anyone for what happened at the time of my operation, Susanna writes.

However, mistakes were made, and my subsequent research suggests that my experience is not unusual.

She's not seeking retribution.

Rather, her interest is in, quote, helping anesthetists and making a difference to patient outcomes.

Finally, on the last Sunday before Christmas break, Susanna pasted her letter into an email and hit send.

Two hours later, the president of the Royal College of Anaesthetists replied and asked her to come see him.

And when I did meet him, I said, thank you so much for meeting with me.

And he said, it took you three years to write.

It was the least I could do.

So, what an incredibly compassionate man.

The doctor took Susanna seriously, not just as a patient with a bad experience, but as a mind.

He was a cardiac specialist, but he put Susanna in touch with an obstetric colleague.

The cardiac guy, he had no skin in this game.

The obstetric guy, he was polite, but he seemed to initially underestimate Susanna.

A slight sense of, you don't understand the finer points of this.

But Susanna had already read enough of the research to push back.

And one thing led to another.

And soon she'd been invited to tell her story at the annual meeting of the Obstetric Anesthetist Association.

Susanna wasn't going to just offer her account.

She planned to articulate what could be learned from it.

It's not good enough to.

It's not enough just to say this horrible thing happened to me.

And it's quite disempowering to you as the person to whom it happened

to

simply give a victim story.

Well, you know, I was never taking that line.

Everything was about learning.

Everything was about trying to understand why, how, what was causing these sorts of situations.

The anesthesiologist obviously did not want the patient to be in pain.

So what could be getting in the way of that?

This was what Susanna wanted to know.

She dove into the medical literature.

There wasn't much out there on interoperative cesarean pain specifically, but she read other kinds of papers, on things like best practices when anesthesia fails.

She felt like she had one shot to answer this question.

There would be hundreds of anesthesiologists in the audience, and she'd been told that she would be the first patient ever to speak at their conference.

Who knew if she or any other patient would ever be invited again?

When I first heard about you and was sent your letter, I assumed you must be mad, one of these doctors had told Susanna.

Then I realized it was very well written.

And it's British mad, so it's crazy.

Okay?

Not American mad, which is furious.

It's British mad.

She's crazy.

It's no wonder that when Susanna began scripting her talk, she took care to, as she puts it, get all of the emotion out of it.

Because I knew if there was too much emotion, it would shut people down, and I never wanted to be dismissed as the hysterical woman.

So getting a voice heard relied on being able to present an intellectual argument.

Hello, my name is David Bogod, immediate past president of the OAA.

I have with me Susannah Stamford, a patient who had a very traumatizing experience under anesthesia for childbirth.

Susanna, can you tell us a bit about yourself?

I'm a photographer and a university's advisor in a school.

My husband is also also in the audience.

This is not a recording of the actual talk.

It was recreated for an educational video.

Susanna and a doctor are sitting in a windowed office.

The silver-haired doctor with a patterned tie, Susanna in a dress with cap sleeves.

The theme of the talk is how failures in communication can result in interoperative pain.

So could you describe how you first met your anaesthetist and how the conversation went?

We were in the ward beforehand and I had already changed.

Susanna and the doctor walked 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.

The thing that led me was the anesthetist's 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.

If 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.

Don'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 anesthetist could have handled it better?

Probably.

Now Susanna lays out exactly how the anesthesiologist 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 anesthesia.

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?

Do you know what a slippery slope that is in reproductive health?

But Susanna is 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.

And in these situations, we recommend switching to general anesthesia.

I can give you general anesthesia if you really want it, is 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.

She summarizes her lessons and winds up with a broadly applicable one:

To not be believed is to add insult to injury.

Susannah 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.

That 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.

Within 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.

You know, like that.

It would change.

Like 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 and that's just a completely different ballgame.

System change, what does that even mean?

To change a system.

It'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.

And 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, like 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.

And 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 Caesarean.

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.

Eventually, 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.

And 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, it's but 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.

Finally, 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.

Next, 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.

An explanation as to the possible reasons for intraoperative 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.

By 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, Cedar 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.

doctors 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.

Susanna said yes, and then she received the study.

And of course, it's 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.

Not one of them 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?

Susanna'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 moved the set.

I never public spoke.

I never, like, I hated reading out loud in class at school.

You know,

I had to create a version of myself that could stand and speak.

And 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 likable.

You can't speak with authority without being accused of being arrogant or

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.

It would be 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.

But 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 it's 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.

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It 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 Caesarean.

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.

Good morning.

I would like to start by saying how pleased I am that this

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.

kind of this is what I'm saying.

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.

And the reason I do is I'm picking up on what makes it.

The goal of the conference was to set priorities for action.

One of the things that was 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.

The 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.

And

this is, 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 going to be 15 this year.

So

this is, and he's very sweet.

Look at him.

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.

Um, yeah, come on, go do it.

Thank you for sticking with it and bringing it to everyone's attention.

It 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.

As 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 Caesarean, 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 want to take my hat off to you, honest.

I think that's an amazing intervention that you were able to accomplish that culture change.

What 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 once, she actually watched me in the operating room.

She came and visited our site.

And

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.

The 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 serial newsletter.

Music Supervision, Sound Design and Mixing by Phoebe Wang.

Original music by Dan Powell, Fritz Myers, and Nick Thorbird.

Additional music in this episode by Marion Lozano.

Carla Pallone composed our theme song and it was remixed by Dan Powell.

Additional production by Mac Miller.

Additional mixing by Catherine 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 Jeffrey Miranda, and Corey Beach at the New York Times, and Sam Dolnick 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.

Rachel Sommerstein 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.

Special thanks to David Bogod, Pierre Cattoni, Lee Riffiter, Isaac Jones, Jasmine Brown, Mark Newman, Felicity Platt, Annie Hunningher, Alex Butwick, and Niamh Hayes.

The Retrievals is a production of Serial Productions and the New York Times.