The Stories We Tell About Pain with Susan Burton

Transcript

• 00:08Okay. Hi, everybody.
• 00:12I'm Anna Reisman, director of
• 00:13the program for humanities in
• 00:14medicine.
• 00:16Welcome to the twenty twenty
• 00:17six Barwick Lecture.
• 00:19The Kenneth and Georgia Barwick
• 00:21Endowment Fund was established by
• 00:22friends and former colleagues of
• 00:24Kenneth and Georgia Barwick.
• 00:26Doctor Kenneth Barwick, who died
• 00:28in two thousand one, was
• 00:29a GI pathologist
• 00:30on faculty here at Yale
• 00:32Medical School, in the seventies
• 00:33and eighties.
• 00:35He was known for his
• 00:36commitment to sharing the value
• 00:37and importance of humanities in
• 00:39medicine,
• 00:40and he received the Leah
• 00:41Lowenstein award in nineteen eighty
• 00:43six for promoting humane and
• 00:45egalitarian medical education.
• 00:49I'm so glad that, as
• 00:50usual, Georgia Barwick has made
• 00:53the long journey from
• 00:56Kentucky. Thank you.
• 00:59So welcome, Georgia. And Georgia
• 01:02is, for whom the award
• 01:04is named, also is a
• 01:05fellow humanist, a retired health
• 01:07care professional who has a
• 01:09deep regard for how the
• 01:09humanities are a natural and
• 01:11necessary part of the health
• 01:12professions.
• 01:13So welcome back, Georgia.
• 01:15Welcome
• 01:16to Georgia's daughter, Sarah, and
• 01:18her two sons who are
• 01:19here also from
• 01:22Cincinnati area. And, welcome to
• 01:26Linda, who is here. Linda
• 01:27West, who is also part
• 01:29of the Barwick committee. And
• 01:31apologies if there are any
• 01:32other Barwick friends or family
• 01:33in the audience, but you
• 01:34are we're so glad you're
• 01:35all here,
• 01:37and we appreciate your enthusiasm
• 01:39and support over the years.
• 01:41This year's Borwick lecture is
• 01:43Susan Burton.
• 01:45Susan Burton is the host
• 01:46of the Peabody award winning
• 01:47podcast, the retrievals from serial
• 01:50productions in the New York
• 01:51Times.
• 01:52And both of these seasons
• 01:53focused on Susan's topic
• 01:55today, the stories we tell
• 01:57about pain. And I'm sure
• 01:58she's gonna go into a
• 01:59lot of detail, but season
• 02:01one focused on untreated pain
• 02:03and IVF egg retrievals, and
• 02:04season two
• 02:06on pain in c sections
• 02:08that was untreated.
• 02:09And if you haven't
• 02:11heard either podcast or if
• 02:12you've only heard one, listen
• 02:14to the other. They're really
• 02:15in utterly engaging and
• 02:17really harrowing and, and also
• 02:19inspiring.
• 02:21Susan is also the author
• 02:23of the memoir, Empty, which
• 02:24tells the story of the
• 02:25eating disorder she kept secret
• 02:27for decades. And her writing
• 02:28has appeared in The New
• 02:29York Times Magazine, The New
• 02:30Yorker, New York Magazine, and
• 02:32many other places.
• 02:34She was a producer at
• 02:35This American Life, and she
• 02:37began her career as an
• 02:38editor at Harper's.
• 02:40I am also delighted to
• 02:41introduce Randy Hutter Epstein, who
• 02:43is our writer in residence
• 02:44and director of the writing
• 02:45for the public
• 02:47concentration
• 02:47track, in the medical humanities
• 02:49concentration. Welcome to all of
• 02:51you
• 02:52medical student writers who I
• 02:53see here.
• 02:54And I am very, very
• 02:56grateful to Randy for moderating
• 02:57the discussion today and also
• 02:58for bringing Susan here, as
• 03:00a guest.
• 03:01Thanks to Karen Kolb, our
• 03:03manager of the humanities of
• 03:04medicine program for all the
• 03:06behind the scenes work.
• 03:08And if you wanna join
• 03:08our mailing list and you're
• 03:09not on it, send an
• 03:10email to karen dot kolb,
• 03:12k o l b, at
• 03:14yale dot e d u.
• 03:15And with that, I will
• 03:17turn things over to Susan,
• 03:18and I think Randy will
• 03:19then join
• 03:21a little bit later. Or
• 03:22she's standing up.
• 03:24Okay.
• 03:25Okay.
• 03:40One two one two. It's
• 03:42always, a little embarrassing. I'm
• 03:44an audio person, but I
• 03:46do always struggle with the
• 03:47microphones in settings like this.
• 03:49So this one seems to
• 03:50be working okay. So thank
• 03:51you so much for that
• 03:52lovely introduction, and I'm I'm
• 03:54really honored to to be
• 03:55here speaking with all of
• 03:56you.
• 03:57Let's see. So I'm going
• 03:58to try and run these,
• 04:00slides. There we go. So
• 04:01they're over there and over
• 04:02there, but not right here.
• 04:03But so yes. So
• 04:05Randy and I are going
• 04:07to primarily be in conversation
• 04:08this evening, but I'm I'm
• 04:10going you too. You're gonna
• 04:11chime in. With questions. Thank
• 04:13you.
• 04:15I'm gonna start with a
• 04:16little bit of an introduction,
• 04:19before we we get going.
• 04:20So,
• 04:23here we go. So
• 04:25when people ask what kind
• 04:26of reporting I do, sometimes
• 04:28I say vaguely women's health
• 04:29care. That's enough for some
• 04:31people.
• 04:32Others are curious and wanna
• 04:33go a layer deeper. What
• 04:35kind of reporting? What aspect
• 04:36of women's health?
• 04:38Well, I would say, one
• 04:39of my interests is in
• 04:41pain, another in not being
• 04:43listened to.
• 04:44Often, it's about where these
• 04:45two things intersect.
• 04:47Sometimes the person I'm talking
• 04:49to lights up. Oh my
• 04:50god. It's an immediately recognizable
• 04:53experience to them.
• 04:54Have you always been interested
• 04:56in this? They'll ask.
• 04:57I've always been interested in
• 04:59telling intimate stories about women's
• 05:01lives, I'll say,
• 05:03But I came to this
• 05:04specific subject matter through a
• 05:06story that at first seemed
• 05:07to me to be about
• 05:08something else.
• 05:09Here's how it happened.
• 05:11One evening in November twenty
• 05:13twenty one, I was on
• 05:14the couch scrolling my phone
• 05:16when I paused, raising my
• 05:17thumb just slightly,
• 05:19taking a second look at
• 05:20a headline.
• 05:21Women sue Yale over fentanyl
• 05:24switch up at fertility clinic.
• 05:26I clicked on the link,
• 05:27which was to a short
• 05:28newspaper article by a local
• 05:30reporter.
• 05:31The article said that for
• 05:32months, a Yale fertility nurse
• 05:34had stolen fentanyl and replaced
• 05:36it with saline.
• 05:37The women bringing the lawsuit
• 05:39said that during surgical procedures,
• 05:41they'd received saline when they
• 05:42should have received fentanyl,
• 05:44causing them excruciating pain.
• 05:48There weren't a lot of
• 05:49details, but immediately, I began
• 05:50trying to fill them in.
• 05:52I read the article on
• 05:53a Friday night, and by
• 05:54Saturday morning, I'd already started
• 05:55reporting.
• 05:56I wanted to know who
• 05:57was this nurse and who
• 05:58were these patients.
• 06:00I wanted to know what
• 06:01happened and how it felt
• 06:02to all involved.
• 06:04Within days, I'd pitch the
• 06:06story to my colleagues at
• 06:07This American Life where I
• 06:08was then working as a
• 06:09producer.
• 06:10I thought it would be
• 06:11one segment, maybe a full
• 06:13hour of our show,
• 06:15And I thought the focus
• 06:16might be on addiction,
• 06:18on the collision of the
• 06:19nurses' need with the patient's
• 06:21need, on her need for
• 06:22the drug, with their longing
• 06:24to have a child.
• 06:27Not long after that pitch,
• 06:28I started interviewing patients.
• 06:31Immediately, I was struck by
• 06:32the echoes in their stories.
• 06:34Patient after patient said they
• 06:36told their doctors they were
• 06:37in pain,
• 06:38screamed so loudly they were
• 06:39overheard in the clinic waiting
• 06:41room, or insisted to the
• 06:42care team, I feel everything.
• 06:44I can feel everything you're
• 06:46doing.
• 06:47They said they'd been ignored,
• 06:48dismissed,
• 06:49not believed.
• 06:51And there was another echo
• 06:53too.
• 06:54So many of the women
• 06:55had blamed themselves for the
• 06:57pain.
• 06:58They thought their bodies weren't
• 06:59sensitive to fentanyl,
• 07:01or that, like conceiving a
• 07:02child, this was just another
• 07:04thing their bodies couldn't do,
• 07:06that this was just what
• 07:07they had to put up
• 07:08with, just what women go
• 07:10through.
• 07:12Through these conversations, a new
• 07:14theme was emerging,
• 07:15one that to me felt
• 07:16profound.
• 07:18The way women's pain is
• 07:19treated and the way women
• 07:21think about pain themselves.
• 07:23The story needed a deeper
• 07:25treatment than just one segment
• 07:26on this American life.
• 07:28I proposed a series to
• 07:30my colleagues at Serial Productions
• 07:31in The New York Times.
• 07:33This became season one of
• 07:35my podcast, The Retrievals.
• 07:37And I'm gonna play the
• 07:38trailer
• 07:39so you can hear the
• 07:40patient's voices
• 07:42and get a sense of
• 07:43the style and texture of
• 07:45the podcast, which I think
• 07:46will help ground the conversation
• 07:48that we're going to have.
• 07:49So
• 07:51so this is the trailer,
• 07:54and it's about three minutes
• 07:55long.
• 07:59The women are seeking fertility
• 08:00treatment for a variety of
• 08:02reasons.
• 08:03They've had a couple miscarriages,
• 08:05and they're pushing forty.
• 08:06They don't have fallopian tubes,
• 08:08or they need sperm.
• 08:10All of them wind up
• 08:11at the fertility clinic at
• 08:13Yale
• 08:14University.
• 08:16Their doctors get the info,
• 08:17start giving themselves the shots,
• 08:20and eventually, they get to
• 08:21the day they've been waiting
• 08:22for,
• 08:23the day of the first
• 08:24egg retrieval.
• 08:26The day of the retrieval,
• 08:27the women arrive at the
• 08:28clinic.
• 08:29They check-in on different mornings,
• 08:30in different months, and calendar
• 08:32years.
• 08:34None of them are here
• 08:35on the same day, but
• 08:36they will come out of
• 08:37the day with the same
• 08:38story.
• 08:40They started the procedure,
• 08:43and, you know, I was
• 08:44just sort of taken by
• 08:46surprise,
• 08:47not expecting
• 08:49the excruciating
• 08:50pain.
• 08:51My blood pressure
• 08:52started going up. I was
• 08:54sweating profusely
• 08:56and telling them I was
• 08:57just in in too much
• 08:58pain, that they had to
• 08:59stop.
• 09:01At that point, I remember
• 09:02them giving me
• 09:04more more of the pain
• 09:05medication
• 09:06and me saying, you know,
• 09:08it's not making a difference.
• 09:10I remember yelling or kind
• 09:11of making like,
• 09:13and really like looking in
• 09:15confusion at my nurse, the
• 09:17attending nurse, and her saying,
• 09:18you know, I'm giving you
• 09:19the most I can legally
• 09:20give you.
• 09:22She said that that's the
• 09:23maximum that she's allowed to
• 09:24give me, so she couldn't
• 09:25give me anything else.
• 09:27At one point, they did
• 09:28say that I had maxed
• 09:28out. I couldn't have any
• 09:29more fentanyl or Versed.
• 09:31And I was like,
• 09:33how is this possible? Like
• 09:34How is that even like,
• 09:35how am I feeling? How
• 09:36do people go through this?
• 09:38I remember, like, thrusting my
• 09:40hips up saying, I feel
• 09:41everything.
• 09:43I don't know. But what
• 09:44are you gonna do? I,
• 09:45you know, I wanted the
• 09:46procedure done. I just let
• 09:48it happen, and I was
• 09:49like,
• 09:50I'm awake.
• 09:51So
• 09:56The patients didn't know why
• 09:58they were in pain.
• 09:59Their doctors didn't know either.
• 10:02And in the absence of
• 10:03information about the pain, people
• 10:05came up with stories to
• 10:06explain it.
• 10:07The patients constructed stories.
• 10:10Staffers at the clinic came
• 10:11up with theories too.
• 10:13Eventually, a nurse would tell
• 10:14her own story about the
• 10:15pain,
• 10:16as would Yale. The Yale
• 10:18Fertility Clinic is not one
• 10:20doctor in a back alley.
• 10:21This is an entire institution
• 10:21that's behind it. It's not
• 10:21this reputation. How do they
• 10:22not
• 10:24It's got this reputation. How
• 10:26do they not see that
• 10:27this is happening?
• 10:28Am I being difficult?
• 10:30I mean, you just you
• 10:31just question,
• 10:33your your sense of self.
• 10:36You are treated like a
• 10:38hysterical
• 10:39woman
• 10:40from the second you walk
• 10:41in there. Like nobody believed
• 10:43me. I felt
• 10:44crazy.
• 10:48In fertility treatment,
• 10:50you evaluate the outcome by
• 10:52whether you wind up with
• 10:53a baby.
• 10:54The outcomes here are a
• 10:55lot more complicated
• 10:57for everyone.
• 10:59Are you kidding me? That's
• 11:00when I lost it. I
• 11:01can almost feel, like, the
• 11:02bomb drop.
• 11:04Bullshit. No harm done. There's
• 11:06no way I can ever
• 11:07look at this lady the
• 11:08same way.
• 11:10From Serial Productions and The
• 11:11New York Times, I'm Susan
• 11:13Burton Law. This is The
• 11:15Retrievals.
• 11:19So that's the trailer.
• 11:22And, honestly, if you haven't
• 11:24listened to it, it is
• 11:25so gripping. So I have
• 11:26a lot of questions, not
• 11:28just about the content, but
• 11:30also the craft because you're
• 11:32a wonderful storyteller.
• 11:35And but I do wanna
• 11:36save room for other people
• 11:37to ask too. But I
• 11:39guess my first question is,
• 11:40and you touched the touch
• 11:41on this a little bit
• 11:42in your intro.
• 11:44You read this story.
• 11:45It's like eight paragraphs
• 11:48that you
• 11:49what part of you thought,
• 11:50oh, I can make I
• 11:51know you thought it would
• 11:52be one piece. You didn't
• 11:53realize it was going to
• 11:54be a series.
• 11:56What was it that you
• 11:57thought
• 11:58you were going to write
• 11:59about? Because it was a
• 12:00lawsuit.
• 12:02And then how did
• 12:04how did then it evolve
• 12:05into something very different? Or
• 12:08did you always think, oh,
• 12:09this is gonna be about
• 12:10women being dismissed?
• 12:13I didn't I didn't know
• 12:14that exactly at the beginning.
• 12:16So I did really think
• 12:17that addiction would be at
• 12:19the core of the storytelling.
• 12:22You know, I was I
• 12:23was drawn to this for
• 12:24a number of reasons. Right?
• 12:25It wasn't just the scandalous
• 12:27facts.
• 12:28Like I said, I've long
• 12:30had an interest in telling
• 12:31intimate stories about women, particularly
• 12:33women's bodies.
• 12:35I went to Yale,
• 12:37it interested me that these
• 12:38events had taken place here.
• 12:40You know, Yale has a
• 12:41lot of power, both in
• 12:44reality and symbolically.
• 12:47So so I was I
• 12:48I didn't I guess I
• 12:49didn't know exactly where it
• 12:51was going. And that's that's
• 12:52usually the case, right? When,
• 12:55when I begin a story
• 12:56and I have some kind
• 12:57of hypothesis
• 12:58about where it's going, but
• 13:00it's not until I start
• 13:02talking to people that I
• 13:03discover, like, oh, this is
• 13:05what the story is really
• 13:06about. So in this case,
• 13:08I started having these conversations
• 13:09with patients,
• 13:10and I was so struck
• 13:12by these echoes in their
• 13:13stories.
• 13:14And that's when I was
• 13:15like, okay, so the story
• 13:16is still about all these
• 13:17other things I thought it
• 13:18was about. Addiction is still
• 13:20a piece of this.
• 13:21The power of institutions, that's
• 13:23still their women's experiences of
• 13:25their own bodies, but really
• 13:26pain
• 13:28is at the heart of
• 13:30this piece. And,
• 13:31it it needed sort of
• 13:33a, you know, a more
• 13:34extensive treatment than than I
• 13:36could do in, like, a
• 13:38a twenty minute This American
• 13:39Life story.
• 13:41And
• 13:42when you started looking into
• 13:44it, I'm assuming
• 13:45as a journalist
• 13:47and you're a very compassionate
• 13:48person, I know that because
• 13:50we know each other, that
• 13:51you were like, okay.
• 13:52This isn't just gonna be
• 13:54these women
• 13:55about talking about what happened
• 13:57to them. I'm gonna hear
• 13:59what the doctors have to
• 14:00say. I'm gonna hear what
• 14:00the nurses have to say.
• 14:01I'm gonna hear what Donna
• 14:02has to say,
• 14:04and then I'm gonna mull
• 14:05over all this stuff and
• 14:06come up with this wonderful
• 14:09series.
• 14:10But a lot of people
• 14:11refused to speak. So were
• 14:12there a time that you
• 14:14thought, oh, now I actually
• 14:15don't have a story. Now
• 14:16what do I do? Yes.
• 14:18Can you explain who spoke
• 14:19and who didn't?
• 14:21Yeah. So, I mean yes.
• 14:22So the,
• 14:24I had all the patient
• 14:26I mean, I didn't have
• 14:27every single interview I needed
• 14:28from the patients early on,
• 14:30but but I knew that
• 14:31I had, a critical mass
• 14:32of of patients on board
• 14:34early on.
• 14:35But I, you know, I
• 14:36I sat down and I
• 14:38played the first draft of
• 14:39episode one,
• 14:41for my editors at at
• 14:42some point after several months
• 14:43of reporting. And after I
• 14:45played that draft, you know,
• 14:47and and that draft sounded
• 14:48a lot like the the
• 14:49actual first episode does. Like,
• 14:51the draft was in pretty
• 14:52good shape, but there was
• 14:53a big question in the
• 14:54room, which was,
• 14:56what what were the doctors
• 14:58and nurses at this clinic
• 14:59thinking?
• 15:00What happened at this clinic?
• 15:02And if I couldn't answer
• 15:04that question,
• 15:06this this wasn't a series.
• 15:07Right? Because that's the question
• 15:09when you hear about these
• 15:10events is what went on
• 15:12behind the scenes.
• 15:14So,
• 15:16it took me a while
• 15:18to,
• 15:19to earn the trust of
• 15:20of staffers
• 15:21who'd been, at the clinic
• 15:23for these events.
• 15:25Everybody I spoke to, I
• 15:26spoke to on background or
• 15:28off the record.
• 15:29And these were people who,
• 15:33you know, were really troubled
• 15:34by these events and they
• 15:36wanted to explore what had
• 15:38gone on. They wanted to
• 15:40share information to prevent something
• 15:42similar from happening elsewhere, right?
• 15:44This happened here at Yale,
• 15:46but it could have happened
• 15:47anywhere.
• 15:49So
• 15:50but even
• 15:51even once I had all
• 15:53these sources, right? I don't
• 15:54I don't have them on
• 15:54tape. I'm making an audio
• 15:56podcast. So so that was
• 15:57an editorial question,
• 15:59to surmount. And, you know,
• 16:00we can talk a little
• 16:01bit more about how I
• 16:02did that. And then there's
• 16:04the nurse. Right? So,
• 16:06so was I going to
• 16:07be able to get this
• 16:08nurse who stole the fentanyl
• 16:10to speak with me? So
• 16:11I did a lot of
• 16:12outreach to the nurse. Her
• 16:14name is Donna,
• 16:15to Donna, to people who
• 16:17were close to her.
• 16:19I didn't end up having
• 16:21substantial conversations with anybody
• 16:23in in Donna's life, and
• 16:25so I had to decide
• 16:26what to do about that
• 16:26too. Donna never responded to
• 16:28my request to speak with
• 16:29her.
• 16:30And I struggled, you know,
• 16:32ethically with what to do
• 16:34about this. So here's this
• 16:35person who's committed this crime.
• 16:37I had access to a
• 16:39lot of publicly available documents,
• 16:42generated by her criminal case,
• 16:44letters written on her behalf,
• 16:47you know, other legal documents,
• 16:49and I had to decide
• 16:50what to do with all
• 16:51of this information.
• 16:53Ultimately, the way I made
• 16:55sense of it was
• 16:56these patients I was reporting
• 16:58on had a lot of
• 16:59questions
• 17:00about Donna, who was she,
• 17:02what were her motivations, what
• 17:04was she thinking? And they
• 17:05had to sort of construct
• 17:07her, they had to invent
• 17:08her. So it was organic
• 17:10to the storytelling to say,
• 17:11here is this person whose
• 17:13actions are somehow at the
• 17:15center of this thing, but
• 17:16we don't really have answers,
• 17:18you know, about it, but
• 17:19we can wrestle with that
• 17:21as as part of the
• 17:22the storytelling. So just as
• 17:24the patients had to construct
• 17:26Donna, you know, I had
• 17:27to construct Donna too as
• 17:29a storyteller. And
• 17:30Donna is her real name,
• 17:32but you also made the
• 17:33decision
• 17:35not to use her last
• 17:37name.
• 17:37But anyone can Google it.
• 17:39So can you explain,
• 17:41like, why you made that
• 17:42decision? Sure. So some of
• 17:44it some of it was
• 17:45a stylistic convention. So if
• 17:46you listen to the podcast,
• 17:47you'll hear that the patients,
• 17:49you know, the the patients
• 17:50are all referred to by
• 17:51by first names.
• 17:54And with Donna,
• 17:56you know, there's there's a
• 17:57certain layer
• 17:59of distance. So Donna at
• 18:01the time this published,
• 18:03she had children who were
• 18:05then, you know, maybe ranging
• 18:06in age from middle to
• 18:07high school. There's some distance
• 18:10it puts between those kids.
• 18:12If somebody Googles them someday,
• 18:14you know, maybe this podcast
• 18:15won't be the first hit,
• 18:17you know, maybe it doesn't
• 18:18come up in association with
• 18:19them.
• 18:21Who knows?
• 18:22But but part of it
• 18:23part of it was a
• 18:24stylistic convention. And there's actually
• 18:26a little piece of tape
• 18:28we may touch on tonight
• 18:30where
• 18:31her last name is,
• 18:32sort of incidentally
• 18:34inserted into the podcast. So
• 18:35there there is one moment
• 18:37where I full name. Yeah.
• 18:38But I do like the
• 18:39fact that you were thinking
• 18:40about her kids in it
• 18:41too when you thought, like,
• 18:43you're not gonna go someone's
• 18:44not gonna
• 18:45look up their kids for
• 18:46another reason and see, oh
• 18:48my god, but their mom
• 18:50to take this, you know,
• 18:51which was a compassionate decision
• 18:53on your report. It's they're
• 18:54not part of the story,
• 18:56but they kind of are.
• 18:59Speaking of style, one of
• 19:01the things that
• 19:02is on no. Oh, yeah.
• 19:04Speaking of style,
• 19:06we have a lot of
• 19:07writers here,
• 19:08and I'm more comfortable with
• 19:09print. But there are things
• 19:11I just found fascinating that
• 19:12I think you could do
• 19:13in a podcast but not
• 19:14print in terms of,
• 19:17for instance,
• 19:19when the women start talking
• 19:20about trust,
• 19:21and maybe we can hear
• 19:22that flick.
• 19:24We hear the same oh,
• 19:26thanks.
• 19:27Let's go ahead.
• 19:29I think it's on. Was
• 19:30peep I think I was
• 19:31talking louder. Did everyone hear
• 19:32me anyhow?
• 19:34Okay. Thank you.
• 19:36Okay. And I'm loud.
• 19:38But we hear now I'm
• 19:40really gonna come loud. So
• 19:42one of the things we
• 19:43wouldn't do in print is,
• 19:45like, different people were almost
• 19:46saying the same quote over
• 19:48and over. And I think
• 19:49if you're writing in print,
• 19:50you're not gonna have the
• 19:52same quote from different people
• 19:54over and over. You're just
• 19:55gonna say it once and
• 19:56then say, everyone else echoed
• 19:58that.
• 19:59But you have the same
• 20:00quote over and over. And
• 20:01let's just listen because I
• 20:02just think it works so
• 20:03wonderfully
• 20:04in audio. Sure. So so
• 20:06the
• 20:07the tape I'm about to
• 20:08play,
• 20:10this comes near the end
• 20:11of the series. It comes
• 20:12in episode five, which is
• 20:13called outcomes, and that's exactly
• 20:15what it is. It's sort
• 20:16of describing the outcomes of
• 20:17of these events for everyone.
• 20:19And
• 20:20every patient
• 20:21said the same thing, like,
• 20:23spontaneously
• 20:24without me bringing it up
• 20:25themselves. And and that was
• 20:28that one of the outcomes
• 20:29for them was was loss
• 20:30of trust in the medical
• 20:31system. So,
• 20:32that's seeking fertility treatment for
• 20:34a variety of reasons.
• 20:36That's the context for what
• 20:38I'm about to play. And
• 20:39I'm just figuring out how
• 20:40do I get to the
• 20:41next slide without,
• 20:45messing up the oh, there
• 20:46we go. Okay. Thank you
• 20:47very much.
• 20:49I mean, it's really kind
• 20:50of scarred me,
• 20:52everything that I went through.
• 20:53I just don't trust
• 20:56I don't trust anybody anymore.
• 20:58You think that your
• 20:59doctors and nurses have your
• 21:00best interest at heart, and
• 21:02it's really hard to regain
• 21:03trust in a in a
• 21:04medical community when
• 21:06somebody has betrayed you like
• 21:08that.
• 21:09And I feel like that
• 21:10speaks volumes coming from someone
• 21:12who works in the medical
• 21:13field myself.
• 21:18The negative a negative downstream
• 21:20effect is just a,
• 21:23deep mistrust
• 21:24of the medical setting where
• 21:26I work, by the way.
• 21:30But but in you know,
• 21:31more generally, I mean, I
• 21:32I I've I was always
• 21:33surprised because my twin sister
• 21:34was, like, not super comfortable
• 21:36in hospitals. And I always
• 21:37kinda felt like, oh, I'm
• 21:38you know, I work in
• 21:39a hospital. I'm I'm extremely
• 21:41comfortable here going into the
• 21:42IVF process. Like, it just
• 21:43wasn't as stressful for me
• 21:44because I felt really comfortable,
• 21:46and that has really been,
• 21:47you know, taken away.
• 21:50To trust people
• 21:52with something as priceless as
• 21:54your child
• 21:55or
• 21:56whatever it is you're doing
• 21:57to bring a child into
• 21:58this world and to lose
• 21:59that that trust, it's not
• 22:01something you ever get over.
• 22:03When you lose that trust
• 22:05in
• 22:06health care and
• 22:08medical
• 22:09practice,
• 22:10I someone who never really
• 22:13had white
• 22:14coat syndrome
• 22:15now does.
• 22:17And I felt really distrustful
• 22:18about
• 22:20the other providers that I
• 22:21would be seeing at Yale,
• 22:23and when it came to
• 22:24them touching my body or
• 22:26coming near near
• 22:27me. I I I don't
• 22:28know. I I feel like
• 22:29it's hard for me to
• 22:31trust, like, med doing a
• 22:33medical procedure again. Mhmm. You
• 22:35know, in a way, like,
• 22:37for the most part, I
• 22:37do, but it's definitely made
• 22:39it more challenging. Like, for
• 22:40instance, I
• 22:41had a c section,
• 22:44in May for my baby,
• 22:45and
• 22:46I just felt really
• 22:48a little bit nervous, you
• 22:49know, like, about, like, okay.
• 22:51Am I gonna feel this
• 22:51pain this time? You know?
• 22:53And
• 22:56So so one of the,
• 22:57you know, one of the
• 22:58reasons,
• 23:00I employed
• 23:01this style here,
• 23:04I wanted
• 23:05the listener
• 23:06to have
• 23:07the same feeling I had
• 23:09when I did those initial
• 23:10interviews
• 23:11and heard patients saying versions
• 23:13of the same thing
• 23:14again and again. So an
• 23:16advantage of the style is
• 23:18it
• 23:19it conveys volume
• 23:21and pattern.
• 23:22So there were patterns in
• 23:24the patient's experiences
• 23:26of pain, and there are
• 23:27patterns in the emotional consequences
• 23:30of that experience.
• 23:34The I knew pretty early
• 23:35on that I wanted to
• 23:37have all the patients telling
• 23:38the stories of their surgeries.
• 23:40I I had I could
• 23:42hear it in my head
• 23:43that I was going to
• 23:43intercut that. But the the
• 23:45thing about trust,
• 23:47it it actually wasn't something
• 23:49that was apparent to me
• 23:50until much later in the
• 23:51process when I was putting
• 23:53together this episode. And I
• 23:55went back to my transcripts
• 23:56thinking about, okay. Well, what
• 23:57you know, what did the
• 23:58patient say about the outcome?
• 24:00And I was so struck
• 24:01on the page. Oh my
• 24:02goodness. They're all saying this
• 24:03stuff about trust. And that's
• 24:05when I I went and
• 24:07I, you know, found all
• 24:08the quotes, and we listened
• 24:09to them and and put
• 24:09them together. And and I
• 24:11did find it, to to
• 24:13be quite quite quite powerful.
• 24:16So this comes up towards
• 24:18the end when you bring
• 24:19up trust.
• 24:21And, I mean, you listen
• 24:22to one episode and you
• 24:24can't not then listen to
• 24:26the next one right away.
• 24:28Two things. One is,
• 24:30how did you decide to
• 24:32structure? Because
• 24:33it isn't just following a
• 24:35court case. It isn't just,
• 24:36like, who stole the drugs,
• 24:39then we find out. It's
• 24:40a much more deeper
• 24:42nonchronological
• 24:44in a I mean, it's
• 24:44kind of. So how did
• 24:46you decide
• 24:48to make structure
• 24:49out of something that has
• 24:51to do with pain, which
• 24:51isn't structure? And then
• 24:54how did you get like,
• 24:55what's your trick in terms
• 24:56of
• 24:57you end one episode and
• 24:59you just wanna go right?
• 25:00Like, I was so glad
• 25:01I wasn't listen when I
• 25:02listened this time, you just
• 25:03binged right through it,
• 25:04which is really easy to
• 25:06do.
• 25:06Yeah. I mean, so the
• 25:08the structure, it was it
• 25:09was somewhat intuitive. So I
• 25:12this
• 25:13this version of the story.
• 25:15Right? Because there's a lot
• 25:15of versions you could tell
• 25:16of the story. You could
• 25:17tell it from a doctor's
• 25:18perspective, a nurse's perspective, from,
• 25:19you know, the all different
• 25:21perspectives. But this this podcast
• 25:22really focuses on the patient
• 25:23perspective. So episode one is
• 25:25the patients are having this
• 25:26experience, and they know they're
• 25:27in pain, and they don't
• 25:29exactly
• 25:29know why. And at the
• 25:30end of the first episode,
• 25:32they get a letter from
• 25:32Yale, that that explains something
• 25:34about this mysterious
• 25:36pain. So so now they
• 25:37have an answer to that
• 25:38question, but what they don't
• 25:39know yet is is who,
• 25:41You know, the letter from
• 25:42Yale says that a nurse
• 25:44had been stealing fentanyl and
• 25:46replace it from saline, but
• 25:46it doesn't name the nurse.
• 25:48So wait, so who was
• 25:50this nurse? Was she minors?
• 25:51So episode two, you know,
• 25:52we find out who who
• 25:54the nurse was. So then
• 25:55just
• 25:56from a storytelling perspective, we
• 25:58need to spend a little
• 25:59time understanding who the nurse
• 26:00was, that's what the patients
• 26:01are on the process of
• 26:02doing too.
• 26:04But then I did want
• 26:05it to move from a
• 26:07consideration
• 26:07of, okay, this wasn't just
• 26:10a story about what this
• 26:11one individual did to these
• 26:13patients. We're moving from a
• 26:15consideration of individuals to a
• 26:16consideration of the system. So
• 26:18what were the reasons this
• 26:20happened?
• 26:20What were the reasons this
• 26:21happened at
• 26:23Yale? But what were the
• 26:24reasons this kind of thing
• 26:26happens across the medical system?
• 26:27What are the reasons
• 26:29that, that pain is dismissed
• 26:31or not listened to? What
• 26:32are the reasons that drugs
• 26:34might be
• 26:35diverted?
• 26:37And so talking about trust
• 26:40and doctor patient relationships, which
• 26:42I think a lot of
• 26:43people here everyone here cares
• 26:44about.
• 26:45I think what struck me
• 26:47the first probably second and
• 26:48third time I listened to
• 26:49it is you go in
• 26:51thinking
• 26:52these
• 26:53women
• 26:54are angry
• 26:56because a pain medication
• 26:58was withheld from them. Because
• 27:01when they said they were
• 27:02in pain, no one listened.
• 27:04But, actually,
• 27:06the letter if you could
• 27:07tell us more about the
• 27:08letter, it seems to me
• 27:09the letter
• 27:10the apology, and I put
• 27:11that in big quotes.
• 27:13The apology letter to me
• 27:15is what
• 27:16really stung the most.
• 27:19And do you think
• 27:20if that could have been
• 27:21handled differently, this whole thing
• 27:23might have been avoided,
• 27:25the lawsuit, the everything? And
• 27:27if you could tell a
• 27:28little bit about what the
• 27:29letter said. Sure.
• 27:31So the way that,
• 27:33that many patients found out
• 27:35that that this happened,
• 27:37this might have happened to
• 27:38them, was they received a
• 27:40letter in the mail,
• 27:42from Yale. The letter came
• 27:44sometime, you know, near the
• 27:46winter holidays was when a
• 27:47lot of people received it.
• 27:49And the letter explained
• 27:51what happened,
• 27:52but it had some language
• 27:53that upset a lot of
• 27:55the patients.
• 27:56I'm going to misquote it,
• 27:58but there were some lines
• 28:00like,
• 28:02we have no reason to
• 28:03believe that this had any
• 28:05negative effect
• 28:06on your health or the
• 28:08outcome of the care that
• 28:09you received.
• 28:10So this idea that there
• 28:12was no negative
• 28:14effect on one's outcomes
• 28:16was
• 28:17really infuriating
• 28:19to the patients.
• 28:20You know, some of them
• 28:21some of them questioned whether
• 28:23they might have gotten more
• 28:24eggs if they'd been in
• 28:25pain, but but but more
• 28:27than that, you know, this
• 28:28had been traumatic.
• 28:30And so to have it
• 28:31dismissed as having, you know,
• 28:33no no impact,
• 28:34I I think was was
• 28:35really disturbing. I mean,
• 28:37there is research, right, that
• 28:39shows that that after a
• 28:40medical error, like, it's
• 28:42important to apologize. You know,
• 28:45the one reason to do
• 28:45that is that you can
• 28:47avoid
• 28:47lawsuits. Right? But but that
• 28:49shouldn't be the the bar.
• 28:52As as far as whether
• 28:55this could have been avoided
• 28:57with,
• 28:58you know, a more fulsome,
• 29:00acceptance
• 29:01of, you know, more fulsome
• 29:03accountability,
• 29:04more fulsome apology, I mean,
• 29:05I I I I don't
• 29:07I don't know. I can't
• 29:08I can't answer that. But,
• 29:11I'm sure that everybody learned
• 29:12a lot of lessons
• 29:14on how to respond in
• 29:16the wake of of something
• 29:17like this.
• 29:19And how do you grapple
• 29:20with
• 29:21you you said you went
• 29:21into this because you're interested
• 29:23in addiction.
• 29:24So, therefore, I think that
• 29:26there's a compassion for those
• 29:28that have problems misusing,
• 29:31whether it's drugs or alcohol.
• 29:34So I'm assuming you went
• 29:35into this with compassion. And
• 29:37then how did you grapple
• 29:38with some of Donna's decisions?
• 29:40And maybe you wanna explain
• 29:42a little more about some
• 29:44of the things that Donna
• 29:45did. And did you go
• 29:46back and forth
• 29:47even though you never got
• 29:48to speak with her about
• 29:49how you grappled what she
• 29:51did?
• 29:52So I certainly went into
• 29:53it with curiosity,
• 29:55you know, about about Donna's
• 29:56experience, really wanting to know
• 29:59what Donna's experience of addiction
• 30:01was. But, again, pretty early
• 30:03on, you know, I it
• 30:04was clear to me that
• 30:05that I wasn't going to
• 30:06be able to to answer
• 30:08that.
• 30:11The patients
• 30:12themselves,
• 30:14had
• 30:15you know, people had different
• 30:17feelings. Right? It depended on
• 30:18the patient. Some of the
• 30:19patients didn't think of much
• 30:20about Donna at all. They
• 30:21were really focused on the
• 30:22system. Some patients thought a
• 30:23lot about Donna. But the
• 30:25patients themselves
• 30:26really were grappling with,
• 30:29with the complexities
• 30:30here. So,
• 30:32for example,
• 30:34one patient,
• 30:36was,
• 30:37is a neuroscientist
• 30:38and her she specializes
• 30:40in addiction research.
• 30:42And, you know, she
• 30:44doesn't believe in incarceration
• 30:46for nonviolent
• 30:48drug
• 30:48crimes. She believes in, you
• 30:50know, rehabilitation.
• 30:51She believes in in treatment.
• 30:54So she had to wrestle.
• 30:55Like,
• 30:56Donna was facing
• 30:58a five to six year
• 31:00prison sentence,
• 31:01And,
• 31:02this patient had been harmed
• 31:05by Donna,
• 31:06yet she
• 31:08didn't want her to to
• 31:09go to prison. So
• 31:11I I guess as a
• 31:12it's it's a way I'm
• 31:13I'm answering your question, by
• 31:15giving an example of what
• 31:16a a patient felt instead
• 31:18of what I felt. Because
• 31:20at the end of the
• 31:20day,
• 31:21I am a reporter here.
• 31:22I could have taken a
• 31:23different stance in this podcast.
• 31:25I could have said, you
• 31:26know, so
• 31:27here's what I think, here's
• 31:28what I think, here's what
• 31:29I think. I didn't do
• 31:30that.
• 31:31I don't think that's, you
• 31:32know, would would
• 31:33that have been it just
• 31:34would have been a different
• 31:35a different story.
• 31:36I had patients who were
• 31:38asking those questions and doing
• 31:40that work for me, and
• 31:40so I sort of didn't
• 31:42need to be the one
• 31:43doing that work. But one
• 31:44of the beauties of the
• 31:45podcast
• 31:46is you do have reflective
• 31:48moments,
• 31:49which I think is wonderful.
• 31:51So we're not on this
• 31:52whirlwind of,
• 31:54like, a law series or
• 31:56whatever,
• 31:57that we feel smarter after
• 31:59listening to it because you
• 32:01make us smarter.
• 32:02And maybe, I think you
• 32:03have one of the clips
• 32:04that just shows, because I
• 32:05think it's interesting for people
• 32:07to hear in terms of
• 32:09your voice and how you
• 32:10reflect back on this. Sure.
• 32:12So, yes. So the, you
• 32:13know, this podcast has a
• 32:15lot of plot, it's propulsive,
• 32:16but there are also these
• 32:17moments where I step out
• 32:19and,
• 32:20reflect or introduce an idea.
• 32:23So
• 32:24the clip I'm going to
• 32:25play,
• 32:27it's it's partly an answer
• 32:28to that question that I
• 32:29said, you know, after episode
• 32:30one that, you know, was
• 32:31was among the questions I
• 32:33needed to answer. Right? Like,
• 32:34what what did the people
• 32:35in the room with the
• 32:36patients think or feel?
• 32:40Here we
• 32:42go. When a patient is
• 32:44in pain during a retrieval,
• 32:46what do the people in
• 32:47the room with her feel?
• 32:49Let's walk it through.
• 32:51Let's walk through the essential
• 32:53unit of this story about
• 32:54the Yale Clinic,
• 32:56the retrieval.
• 32:57Here's how it worked at
• 32:58Long Wharf.
• 33:00The doctor would walk into
• 33:01the room.
• 33:03Lights are dim.
• 33:04Patient already there.
• 33:07Once the patient was sedated,
• 33:09the doctor would begin.
• 33:11If the patient flinched, the
• 33:12doctor would stop,
• 33:14ask the nurse to give
• 33:15more meds,
• 33:16wait for them to kick
• 33:17in.
• 33:18If the meds still didn't
• 33:19work, the same thing again.
• 33:22And then if there were
• 33:23no more times to stop,
• 33:24no more fentanyl to give,
• 33:26the doctor might say something
• 33:27like,
• 33:28you have this many follicles
• 33:29left.
• 33:30Would you like me to
• 33:31stop or keep going?
• 33:34And most of the patients
• 33:35would say,
• 33:36keep going.
• 33:38There's competing interests, right? One
• 33:41Yale staffer said to me.
• 33:43They're uncomfortable,
• 33:44but they wanna have a
• 33:45baby.
• 33:51This is an impossible position
• 33:52for the patient, of course.
• 33:54The patient is saying, yes.
• 33:56I want this.
• 33:57But what else could they
• 33:58say?
• 33:59By this point in their
• 34:00treatment, there's already so much
• 34:02they've submitted to and so
• 34:03much control they've relinquished.
• 34:06And there's a time sensitivity.
• 34:08A doctor doesn't have all
• 34:10day.
• 34:11There's only a window of
• 34:12a couple hours to get
• 34:13this done.
• 34:15After that, the patient will
• 34:16ovulate and lose all of
• 34:18her eggs.
• 34:20There's an awareness of what's
• 34:22come before this.
• 34:23Money, time,
• 34:25maybe previous losses,
• 34:27the last shot before the
• 34:28insurance runs out.
• 34:30It's not a life saving
• 34:32procedure,
• 34:33one Yale staffer said to
• 34:34me,
• 34:35but also I don't think
• 34:36elective is the right word
• 34:37to use for something that's
• 34:39allowing someone to build a
• 34:40family
• 34:41when they otherwise aren't able
• 34:42to.
• 34:44Doctors know what the patient
• 34:45has put into this
• 34:47and what she wants out
• 34:48of it.
• 34:49Each time I'm doing a
• 34:51retrieval and getting follicles,
• 34:53a doctor from another clinic
• 34:54said to me,
• 34:55I remind myself that this
• 34:57egg could be the baby.
• 35:02But getting through a painful
• 35:03retrieval does not feel good.
• 35:06It's awful, one staffer from
• 35:08Yale told me.
• 35:10That's not why I went
• 35:11into medicine,
• 35:12to cause people pain.
• 35:16So what are the people
• 35:17in the room with a
• 35:18patient feeling?
• 35:19A lot.
• 35:21It's not that they aren't
• 35:22aware of pain.
• 35:23It's that they're attuned to
• 35:25multiple varieties of it,
• 35:27including the pain of longing.
• 35:31The patient puts up with
• 35:32the pain because she longs
• 35:34to have a child.
• 35:35The doctor knows the depth
• 35:37of that longing.
• 35:39Getting the eggs causes one
• 35:41kind of pain,
• 35:42but relieves another.
• 35:56So so that's a passage,
• 35:59yes. So so it is
• 36:00one of the more right
• 36:01reflective
• 36:02passages. They're I'm not intrude
• 36:04I'm not sort of advancing
• 36:06the the plot.
• 36:09This came
• 36:11in,
• 36:12an episode
• 36:13about what went on behind
• 36:15the scenes at the clinic.
• 36:16So like I said earlier,
• 36:18I didn't have a lot
• 36:19of tape,
• 36:21to
• 36:22to use in this episode,
• 36:23which is a challenge in
• 36:24a medium that that relies
• 36:26on tape. So so when
• 36:27you're, you know, when you're
• 36:28putting together something like this,
• 36:29you know, you're always you're
• 36:30kind of looking forward to
• 36:31the next tape. You know,
• 36:32your ears perk up when
• 36:34you get to the next
• 36:34tape. So it's,
• 36:37it's hard to put together
• 36:39something without tape. You'll notice
• 36:40in here the music came
• 36:42in and out. This podcast
• 36:44had,
• 36:45a very prominent,
• 36:47score
• 36:48and the music became sort
• 36:50of,
• 36:51sort of
• 36:52it functions
• 36:53like tape in the sequence
• 36:55you just heard.
• 36:57And
• 36:58by this point in the
• 36:59podcast, it's episode four. So
• 37:01the listener is already you're
• 37:02sort of, like, already invested.
• 37:04The music, like, evokes
• 37:06something for you.
• 37:08So,
• 37:09so so it so it
• 37:10works. So so I get
• 37:11away with it. But,
• 37:13but yeah. But but that
• 37:14was that was always a
• 37:15really important,
• 37:17section of the podcast for
• 37:18me. It was very important
• 37:20for me
• 37:21to I really wanted listeners
• 37:24to
• 37:24understand
• 37:25what was going on in
• 37:27the room to you know,
• 37:28it's it's not just life
• 37:30like, oh, a patient's in
• 37:31pain and
• 37:33the health care providers in
• 37:34the room
• 37:35don't don't care, you know.
• 37:37Like, at at least among
• 37:38the staffers I talked to,
• 37:40you know, that just wasn't
• 37:41the experience
• 37:42at at all.
• 37:43I'm gonna open it up
• 37:44in a second, but I
• 37:45want you to play one
• 37:46more clip Yeah. That I
• 37:48loved because
• 37:50in again, in terms of
• 37:52what audio can do, this
• 37:53is gonna be a spoiler
• 37:54alert, but you should have
• 37:56listened anyhow.
• 37:59When Donna gets her license
• 38:01revoked,
• 38:02but then she gets it
• 38:04back.
• 38:05And I just
• 38:07listen carefully to the end
• 38:08of this clip, which I
• 38:10think is fascinating in terms
• 38:12of storytelling.
• 38:13It's obviously intentional.
• 38:15So so this this tape,
• 38:17comes at the end of
• 38:18a sequence. So, so Donna,
• 38:21there was like a now
• 38:22I can't remember, like, the
• 38:23exact
• 38:24exact
• 38:25terms, but, like, there was
• 38:26sort of a a temporary
• 38:27suspension placed on her license,
• 38:29after all this came out.
• 38:31And then
• 38:32she went to the Connecticut
• 38:34State Board of Nursing and
• 38:36there was like a hearing,
• 38:38like, could she get her
• 38:38license back or not?
• 38:41And it took a couple
• 38:42of hearings, but eventually she
• 38:43gets her license back. So
• 38:45there's there's audio of these
• 38:47proceedings. I have some of
• 38:49the audio in the podcast,
• 38:51and this audio is at
• 38:53the very end of the
• 38:54hearing at which she is
• 38:56is given her license back.
• 38:59The patient's note.
• 39:01Okay.
• 39:03All in favor?
• 39:05Aye. Aye. Aye.
• 39:09Opposed?
• 39:11Abstaining.
• 39:13And a motion passes. Thank
• 39:14you very much.
• 39:18Thank you. Thank you. Thank
• 39:21you. Yep. Thank you. Yep.
• 39:21Thank you.
• 39:23Next on the agenda is
• 39:25consent order made.
• 39:27I'm not sure if you
• 39:28heard that clearly, but
• 39:30so much tension is built
• 39:32up in the podcast.
• 39:34And what's gonna happen to
• 39:35Donna? What's her punishment?
• 39:37What do we feel about
• 39:38her? Is she gonna lose
• 39:39her license?
• 39:41And this clip ends with,
• 39:42and the next on the
• 39:43agenda.
• 39:44And I just
• 39:46and you just realize, like,
• 39:47they made her decision, and
• 39:49now the judge is going
• 39:50on to the next thing.
• 39:51And it's just one other
• 39:53case of many. We're so
• 39:54invested in this, but
• 39:56it's just one little thing.
• 39:59So I have a lot
• 40:00more questions, but I'm sure
• 40:01you do too. So let's
• 40:02open it up. And,
• 40:03and I think it would
• 40:04be a good idea when
• 40:05you ask a question just
• 40:06to say who you are,
• 40:07what year you're in, or
• 40:09if you
• 40:10one of the fertility doctors
• 40:12that you wanna say anything.
• 40:13I don't I don't think
• 40:14they came.
• 40:17There's gotta be a question.
• 40:19Oh.
• 40:23Yeah. Do I need the
• 40:24microphone? Yeah. Might as well.
• 40:26Super.
• 40:30Hi. I'm Nora Seager. I'm
• 40:31a,
• 40:32palliative care doctor, so I
• 40:33take care of a lot
• 40:34of patients who are in
• 40:35pain.
• 40:36And I listen to this
• 40:37podcast. And the segue
• 40:39that you offered was kind
• 40:40of,
• 40:42related to my question and
• 40:43that we're sitting here at
• 40:44Yale, right, at Yale School
• 40:45of Medicine.
• 40:47How do you think the
• 40:49institution is doing in terms
• 40:51of,
• 40:52like, addressing
• 40:53the wrongs and,
• 40:56what more could we do
• 40:58to kind of prevent further
• 41:00mistreatment?
• 41:02The other thought that I
• 41:03had was that whenever I
• 41:05hear mistrust,
• 41:07I think in medicine sometimes
• 41:09we,
• 41:10like, use that as a
• 41:12way to further dismiss patients.
• 41:14Right? Like, oh, they're just
• 41:14really mistrustful
• 41:16or,
• 41:17you know,
• 41:18it's on them kind of,
• 41:19like, their their mistrust is
• 41:21on them.
• 41:22So whenever I hear mistrust,
• 41:23I always hear try to
• 41:24substitute in my mind, like,
• 41:25what mistreatment
• 41:26did befell them to lead
• 41:29to the mistrust.
• 41:30And so I guess my
• 41:31question is how do we
• 41:32do better to treat people
• 41:34better so that
• 41:36they trust us?
• 41:37Yeah. I mean, those are
• 41:38those are those are big
• 41:39and good questions. I mean,
• 41:41as far as as how
• 41:42Yale is doing, I mean,
• 41:43I think that all of
• 41:44you in this room are
• 41:45are likely better positioned to
• 41:47to answer that question than
• 41:49than than I am. I
• 41:50mean, I I,
• 41:52I will say more broadly,
• 41:54one of the things that
• 41:55has been so incredibly heartening
• 41:57about releasing this work into
• 41:59the world is is how
• 42:00many health care providers I've
• 42:01been in conversation with over
• 42:03the past several years who
• 42:04have really taken,
• 42:06these ideas on board who,
• 42:08you know, it's it's who
• 42:10who
• 42:11feel passionately,
• 42:12right, about improving patient care
• 42:14and and specifically around this
• 42:16this area, right, about inadequately
• 42:19treated pain.
• 42:20And then as far as
• 42:21as mistrust and what that
• 42:23word evokes for you, I
• 42:25I know what you mean
• 42:25about about certain words in
• 42:26medicine. Sometimes I have that
• 42:28reaction when I'm reading about,
• 42:29like, a, you know, a
• 42:30noncompliant
• 42:31patient, you know, and it's
• 42:32this it's sort of it's
• 42:33there's sort of this judgment
• 42:35contained and, like, well, this
• 42:36patient isn't compliant. Well, maybe
• 42:37there are some reasons this
• 42:39person isn't taking the prescribed
• 42:41medication. I mean, as far
• 42:43as what to do to
• 42:44regain the trust of patients
• 42:46who've lost faith in the
• 42:47health care system, I mean,
• 42:48I think that's a huge
• 42:51problem that we're grappling with
• 42:53as a country right now.
• 42:54Right? Like, when you think
• 42:55of the women
• 42:57in this podcast who said
• 42:59they lost trust in the
• 43:00health care system, right, these
• 43:01are women of reproductive age.
• 43:04And right now, a lot
• 43:05of our public health policy,
• 43:07right, is being informed by
• 43:09by women of reproductive age
• 43:11who've who've lost faith in
• 43:12the medical system. So what
• 43:13do we do to win
• 43:14them back? I mean, I
• 43:15think it it a lot
• 43:17of it can take place
• 43:18on the level of the
• 43:19individual encounter.
• 43:20So if there's somebody whose
• 43:22pain was inadequately treated, whose
• 43:24pain was dismissed, you know,
• 43:25what do you do? You
• 43:28open up the conversation about
• 43:29pain. You present choices about
• 43:31pain. You set expectations about
• 43:33pain. You adequately treat that
• 43:34pain.
• 43:36And and you elicit, you
• 43:38know, that patient's story, what
• 43:40they're worried about, what they're
• 43:41coming in with. I mean,
• 43:42I don't think there's an
• 43:44easy answer to the question
• 43:45of how how you regain
• 43:47trust, but but I think
• 43:48some of it involves understanding
• 43:49what was behind the loss
• 43:50of trust in the first
• 43:51place.
• 44:00Hello. Hi. I'm Bailey. I'm
• 44:01a second year student.
• 44:03I was listening to the
• 44:04first season of the retrievals
• 44:06when I received my acceptance
• 44:08to Yale School of Medicine,
• 44:12which was complicated.
• 44:13And
• 44:15since coming here, I have
• 44:16actually had gynecologic surgery
• 44:19here at Yale, and I
• 44:20will likely
• 44:21be going to that fertility
• 44:23clinic.
• 44:24So it's deeply personal for
• 44:26me, and thank you very
• 44:27much for your reporting.
• 44:29I'm really interested in the
• 44:30way that in oh, I'm
• 44:32also in the writing concentration,
• 44:34with doctor Epstein
• 44:35and feel really lucky about
• 44:37that. And I'm really interested
• 44:38in the way that you
• 44:39in all of your work
• 44:41go from the level of
• 44:42the individual to the level
• 44:43of the system there within
• 44:45to some greater theme.
• 44:48And I'm curious about the
• 44:49way you choose
• 44:51your examples. So I know
• 44:53in this case, you were
• 44:53scrolling your phone and you
• 44:55read this thing about Yale,
• 44:56but you ended up going
• 44:57on to an awesome second
• 44:59season where you choose a
• 45:00different institution to talk about
• 45:02pain and many of the
• 45:03same things,
• 45:05but in a different example.
• 45:07So I'm just really curious
• 45:08about how you think about
• 45:10what is most
• 45:11what is going to be
• 45:12the best way to illustrate
• 45:14the theme,
• 45:15not just at the level
• 45:15of the individual or the
• 45:17system, but in general.
• 45:18Yeah. Yeah. I mean, it
• 45:19it it's a great question,
• 45:20and it it varies. So
• 45:22the second season of the
• 45:23podcast was about,
• 45:25intraoperative pain during c sections.
• 45:28But the the way that
• 45:29came about,
• 45:31you know, it's it's sort
• 45:32of so I was getting
• 45:33a lot of emails after
• 45:35this first season about
• 45:37under undertreated pain of all
• 45:39kinds, and the emails about
• 45:40c sections really stood out
• 45:42because of, you know, just
• 45:44the intensity of of the
• 45:45pain.
• 45:47And then at the same
• 45:48time, I was getting a
• 45:49lot of questions like, okay.
• 45:50So how do we fix
• 45:51this problem, like, of dismissing
• 45:53women's pain? And I was
• 45:54just like, well, I don't
• 45:56know. Like, that wasn't my
• 45:57reporting. But then I was
• 45:58like, my
• 46:00god. How do we fix
• 46:01these problems? What are the
• 46:02solutions?
• 46:03And I became really interested
• 46:05in, you know, so what's
• 46:06a story I can do
• 46:07that that would get at
• 46:08that? And it just you
• 46:10know it just and so
• 46:11I was sort of proceeding
• 46:12down both these paths and
• 46:13you know other paths as
• 46:14well, but then it just
• 46:15so happened that,
• 46:17intraoperative pain during c sections
• 46:19was a problem that people
• 46:21were actively trying to solve.
• 46:23And,
• 46:24I had encounters
• 46:25with with two of two
• 46:27of those people. And so
• 46:29it those two things were
• 46:31a marriage of, you know,
• 46:33the my questions. And and
• 46:34so that's sort of how
• 46:35that one came together.
• 46:37I think there are other
• 46:38ways to do it and
• 46:39other reporters do it other
• 46:40ways. Other reporters have, you
• 46:42know,
• 46:43a topic they wanna explore,
• 46:44and you just start calling
• 46:45around and sort of doing
• 46:47what some people call casting,
• 46:48you know, looking for the
• 46:49examples to illustrate it. And
• 46:51and that's a perfectly valid
• 46:53way of of going about
• 46:54it,
• 46:55as well.
• 47:02Hi. Thank you for this
• 47:03talk. I'm Eva. I'm a
• 47:05fourth year student.
• 47:06I used to work at
• 47:07you should
• 47:08University of Illinois Chicago Health.
• 47:10So Yeah. Both seasons were
• 47:12uncomfortably close to home.
• 47:16I am curious about you
• 47:18focus on both seasons on
• 47:19this acute experience of pain
• 47:21that women have. But chronic
• 47:23pain is also a huge
• 47:24issue in women's health. Endometriosis
• 47:26has long been
• 47:28under researched,
• 47:29misunderstood,
• 47:31underdiagnosed.
• 47:32And so I'm curious about,
• 47:34how do we take the
• 47:35picture from an acute pain
• 47:37experience
• 47:38and a loss of trust
• 47:39on the health care system
• 47:40from that to a chronic
• 47:41pain experience
• 47:43and,
• 47:44the complexities that that brings?
• 47:46Yeah. That's a great question.
• 47:48I mean, I haven't done
• 47:49enough reporting
• 47:51on chronic pain to to
• 47:52really give you a, like,
• 47:54a real answer on on
• 47:56how to do it.
• 47:58I will say that,
• 47:59I probably get the most
• 48:01emails about the pain of
• 48:02IUD insertions followed by end
• 48:04endometriosis.
• 48:07And,
• 48:09and I have I have
• 48:10I have been thinking about,
• 48:11you know, is is is
• 48:13is that what I'll address,
• 48:14you know,
• 48:16next or or soon after
• 48:18next?
• 48:21Yeah. The issues around
• 48:23chronic pain and, you know,
• 48:25visit after visit and,
• 48:28you know, I hear from
• 48:29patients who have, you know,
• 48:30whole, like, PowerPoint presentations
• 48:32that they bring to doctors
• 48:34to explain.
• 48:37It's
• 48:39I don't have a good
• 48:41answer
• 48:41to it. I wish I
• 48:42wish I did. Yeah.
• 48:54Oh, thank you.
• 48:56Hi, Susan. I'm Maris Antilli.
• 48:58I'm a master's student here,
• 48:59but I'm also a journalist
• 49:01and work a lot in
• 49:02this reproductive health space. So
• 49:04I really
• 49:05beyond appreciated your podcast, and
• 49:07it's made me think a
• 49:08lot about potentially branching into
• 49:10the audio journalism space. And
• 49:12so I have a question
• 49:13kind of going off of
• 49:14that, going off of season
• 49:15two.
• 49:18It really struck me how
• 49:20visceral is the word that
• 49:22I like, keeps coming to
• 49:23mind about how, the descriptions
• 49:25of the c sections.
• 49:27And
• 49:28I believe at one point
• 49:29you were observing
• 49:31in the operating room, and
• 49:33so I'm wondering
• 49:36if you could speak to
• 49:38how you it sounded like
• 49:39your connection with doctor Heather,
• 49:41like, was kind of the
• 49:43in there. And so but
• 49:44in general, I'm wondering, like,
• 49:46can you speak to the
• 49:47the challenges of access into
• 49:49medical spaces and how journalists
• 49:51and,
• 49:53and physicians,
• 49:54medical providers in general can
• 49:56kind of partner together. Like,
• 49:58are there you know, how
• 49:59do we navigate these types
• 50:00of,
• 50:02relationships? And I just found
• 50:04that really effective. And so
• 50:05I'm curious if you can
• 50:06speak to that.
• 50:08Yes. So in season two,
• 50:11there's a moment where
• 50:13I go into the OR,
• 50:14and I'm able to observe,
• 50:17part of a c section.
• 50:19And, it was I feel
• 50:21really fortunate that I was
• 50:23able to do that. It
• 50:23really grounded a lot of
• 50:25the storytelling.
• 50:27It is it is difficult
• 50:28to
• 50:29for reporters to get access
• 50:31to reporting in hospitals for
• 50:34all kinds of understandable reasons
• 50:36around patient privacy, etcetera.
• 50:39I
• 50:40I do think that,
• 50:42you know, oftentimes institutions
• 50:45place restrictions
• 50:46on,
• 50:48what health care providers can
• 50:50say. Can you speak to
• 50:50the press? Do you need
• 50:51to go through a PR
• 50:52person before you speak to
• 50:53the press? You know, different
• 50:54institutions have different rules.
• 50:58One thing I have really
• 50:59learned from all this reporting
• 51:01is that we can't solve
• 51:03problems in health care unless
• 51:04we consider the experiences
• 51:06of patients and providers in
• 51:08tandem.
• 51:09So whenever there is an
• 51:11opportunity
• 51:12to talk to a journalist
• 51:14as a health care provider,
• 51:16I I, you know, I
• 51:17would encourage I would encourage
• 51:19you all to to take
• 51:20it because,
• 51:23just in the way, like,
• 51:24it it has an impact
• 51:25hearing these patient voices. It
• 51:28has an impact hearing,
• 51:29providers' voices too.
• 51:35Hi.
• 51:36How is
• 51:38excuse me. How is this
• 51:40is zone I'm a forensic
• 51:42psychiatrist.
• 51:44I just wanna come in
• 51:45a little bit on not
• 51:46the main topic of the
• 51:47pain, but
• 51:49on a derivative of the
• 51:50letter.
• 51:53I think it was certainly
• 51:54in advance in a certain
• 51:56way
• 51:57that hospitals finally realized that
• 52:00it was important
• 52:02to acknowledge mistakes when you
• 52:04make them.
• 52:06I also wanna comment, though,
• 52:08how difficult
• 52:09that is.
• 52:12I mean, if you take
• 52:13an example, like, of a
• 52:15of a patient who commits
• 52:16suicide
• 52:18and the family calls the
• 52:19psychiatrist
• 52:21and wants to know what's
• 52:23what's happened,
• 52:24how do you deal with
• 52:25that?
• 52:26On the one hand,
• 52:28most patients, when they talk
• 52:29to a psychiatrist, don't expect
• 52:31their psychiatrist to tell them
• 52:33to tell their parents how
• 52:34they felt about them and
• 52:36all the stories about that.
• 52:38And yet, you have to
• 52:40go through this
• 52:41complicated
• 52:42course
• 52:43that the parents also eventually
• 52:45can get those records
• 52:48as next of kin after
• 52:49somebody dies.
• 52:51But you have to be
• 52:52able to try to treat
• 52:54people understanding
• 52:55what they're going through at
• 52:57the same time trying to
• 52:59manage that complicated
• 53:01information
• 53:02kind of business. And I
• 53:03think the hospital
• 53:05sounds like lawyers got in
• 53:07and wrote those letters
• 53:09because they're concerned about the
• 53:10lawsuits and that undercut the
• 53:12whole,
• 53:14undercut the whole apology.
• 53:16And I think that's unfortunate.
• 53:19Yeah. I I I I
• 53:20do I do think that's
• 53:21hard. I mean, I think
• 53:22that when
• 53:24patients,
• 53:25you know, have some kind
• 53:26of harm
• 53:27some kind of harm befalls
• 53:28them,
• 53:30I think what many patients
• 53:32want, they want to understand
• 53:34what happened. You know? They
• 53:35want acknowledgment. They wanna understand
• 53:37what happened, and many of
• 53:39them want to know that
• 53:40it won't happen again. That
• 53:41can make
• 53:43people feel like what happened
• 53:45to me was not all
• 53:46for not.
• 53:47This this having this conversation
• 53:49with these people at this
• 53:50hospital sitting around this table,
• 53:51you know, is is a
• 53:52way of of making sure
• 53:53that this doesn't happen to
• 53:55to somebody else.
• 53:57Hi.
• 53:59Actually,
• 54:00you go first. Okay. Me?
• 54:02Yes. Okay. Have a point.
• 54:04Hi.
• 54:04Hi. I'm Cecilia. I'm a
• 54:06third year medical student. Similar
• 54:08to Bailey, I was listening
• 54:09to the retrievals
• 54:11right after
• 54:12after I got into the
• 54:13Yale School of Medicine,
• 54:16and right before when when
• 54:17I was moving here, actually.
• 54:19And I was really
• 54:21struck by what you were
• 54:21saying about having to consider
• 54:23the
• 54:24experiences of patients and providers
• 54:26in tandem,
• 54:28especially because of what you
• 54:29were saying about patients having
• 54:30a difficult time, obviously, and
• 54:33very understandably so losing trust
• 54:34in the medical system, feeling
• 54:36like they weren't heard.
• 54:37I'm wondering
• 54:39what kind of feedback you
• 54:40got
• 54:41after
• 54:42sharing this podcast that did
• 54:45have both the experiences of
• 54:47providers and patients.
• 54:50Because like you said, it
• 54:51the providers
• 54:52were also feeling terrible in
• 54:53this it was it was
• 54:54not
• 54:56on both sides. Both people
• 54:57were feeling terrible, and on
• 54:58both sides, people came away
• 54:59from this feeling hurt. So
• 55:00I'm just wondering what kind
• 55:01of feedback you got either
• 55:02from the patients themselves or
• 55:03from people who heard your
• 55:04story.
• 55:05Yeah. I I mean, I
• 55:06do feel like yes. Right?
• 55:07Like, the kind of moral
• 55:09distress, the moral injury of,
• 55:11of feeling powerless, right, to,
• 55:14to prevent to to stop
• 55:15a patient's pain or,
• 55:17or to, you know, feel
• 55:19betrayed by a colleague who
• 55:21stole drugs. Right? There's all
• 55:22kinds of injuries to to
• 55:23the health care providers
• 55:25in in,
• 55:26in this particular story.
• 55:29I mean, I
• 55:31so
• 55:32do you mean as far
• 55:32as, like, patients and providers
• 55:34at Yale or patients and
• 55:35providers more more broadly?
• 55:37I think more broadly. More
• 55:38broadly. Yeah. So
• 55:40I tend to hear mostly
• 55:42from from patients,
• 55:44but I do hear from
• 55:45providers
• 55:46too.
• 55:47And,
• 55:48and oftentimes, those providers are
• 55:51sharing stories of, you know,
• 55:52their their own frustrations
• 55:54with,
• 55:55with, you know, wanting things
• 55:57to be better in the
• 55:57system, wanting to deliver better
• 55:59patient care,
• 56:00and,
• 56:01wanting to have conversations
• 56:03about what gets in the
• 56:04way of delivering the care
• 56:07they want to deliver.
• 56:09And, you know, again,
• 56:10all of you,
• 56:11even those of you who
• 56:12are still students are probably
• 56:14familiar with with some of
• 56:15those obstacles. Right? Some of
• 56:16those obstacles might be interpersonal,
• 56:19like there's a bad manager.
• 56:20Like, it's like any workplace
• 56:21workplace. Some of those might
• 56:23be systemic.
• 56:24Some of those, you know,
• 56:25there there are all kinds
• 56:26of barriers to to doing
• 56:28the job that, that that
• 56:30one wants to do. So,
• 56:34I I wasn't sure how
• 56:36health care providers would would
• 56:37hear the podcast, and and
• 56:39like I said, that's been
• 56:40one of the really,
• 56:42rewarding and interesting things
• 56:45to me in the years
• 56:46since I've been doing the
• 56:47supporting is to be in
• 56:48conversation
• 56:49with, with doctors and nurses
• 56:51and and others who
• 56:54who want to make positive
• 56:56changes.
• 56:57So I think Oh, we
• 56:58have one more. Let's do
• 56:59one more question and then
• 57:00Okay. Back to you, Rana.
• 57:01So, a little bit related
• 57:03to all of that is,
• 57:04you know, kind of like
• 57:06you, I was thinking when
• 57:07I was hearing that apology,
• 57:08there were definitely lawyers involved.
• 57:09That was sort of my
• 57:10first thought.
• 57:13And I think
• 57:14what I love about your
• 57:15podcast is that you do
• 57:16such a great job sort
• 57:17of taking on different perspectives,
• 57:19not thinking someone's coming at
• 57:20this from this sort of,
• 57:21like,
• 57:22evil sort of viewpoint. Right?
• 57:24But I was sort of
• 57:26curious if you had spoken
• 57:28with anyone
• 57:29who is
• 57:30a lawyer or is part
• 57:31of the kind of business
• 57:33angle
• 57:34of,
• 57:35Yale New Haven Hospital system,
• 57:37because these are kind of
• 57:39also, like, the big stakeholders
• 57:40here in terms of, like,
• 57:41who has the money
• 57:43and why we're putting out
• 57:45these kinds of letters and
• 57:46why we're sort of trying
• 57:47to cover things up in
• 57:49this way.
• 57:50Yes. And also thinking that
• 57:52they're probably not individually evil
• 57:54people either. Right? Like Right.
• 57:56So as far as the,
• 57:58the letter in this podcast,
• 58:00I,
• 58:01I think, you know, on
• 58:03confidential source, I I think
• 58:04I'm not gonna say a
• 58:05lot about about that particular
• 58:07letter. But in general, you
• 58:09know, there is there is
• 58:10sort of a template to
• 58:11to follow when,
• 58:13when drug diversion specifically happens,
• 58:16at an institution.
• 58:17The, you know, the you
• 58:18know, go go on the
• 58:19CDC website, and there's there's,
• 58:21like, a model for what
• 58:21you should do. And,
• 58:24and the the letter that
• 58:25that,
• 58:26that Yale sent,
• 58:29checks, you know, some some
• 58:31of those boxes.
• 58:33I if I'm remembering correctly,
• 58:35the the example on the
• 58:36CDC website, maybe, like, the
• 58:38apology is a little more
• 58:40bold faced than than it
• 58:42was in the,
• 58:43letter that these Yale patients
• 58:45received.
• 58:47But
• 58:48I haven't done a lot
• 58:50of reporting
• 58:51on kind of, like, the
• 58:53the
• 58:54hospital legal people who are,
• 58:56like, thinking about it from
• 58:57that perspective.
• 59:11That I I should I
• 59:13should do. I don't I
• 59:14don't have a lot to
• 59:15say about that.
• 59:20We're so grateful that you
• 59:21came back
• 59:23to speak
• 59:24here about your podcast.
• 59:25And I think that, you
• 59:27know, it seems like a
• 59:28lot of people did listen.
• 59:30For those who didn't, it
• 59:31really
• 59:32is
• 59:34I I think it's more
• 59:35inspiring than anything else because
• 59:37you do end, like, that
• 59:39we can do things, especially
• 59:40in the c section, that
• 59:41there are people
• 59:43that are trying to listen
• 59:45to patients to minimize pain.
• 59:48And we're looking forward to
• 59:49your book also so as
• 59:51you continue to work. So
• 59:53thank you so much. Thanks
• 59:54for your time today.
• 01:00:01He wants to come
• 01:00:04up.
• 01:00:05And again, I just Thank
• 01:00:07you very much, everyone. Thank
• 01:00:08you. As you said