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- Hello and welcome to this JAMA Q&A. I'm Dr. Kirsten Bibbins-Domingo, editor-in-chief of JAMA and the JAMA Network. Today's Q&A is devoted to maternal mortality in the United States, deaths that occur during pregnancy, at delivery, or within the first year after pregnancy. We're not focusing on a particular article, although JAMA has devoted considerable attention to maternal mortality over the years. We're focusing on this topic because of its importance, highlighted at regular intervals in new reports, summarizing the strikingly high rates of maternal deaths in the US. And in the tragic personal stories, we see all too often of individuals, many of them high profile individuals who have died while pregnant giving birth, or soon thereafter. A recent release from the National Center for Health Statistics in March of 2023, covered by JAMA Medical News, makes the case for the importance of this issue with the numbers in the US from 2021. There are three things that are striking in the numbers on maternal mortality in the US. The first is that they're high. The US rate for 2021 was 32.9 maternal deaths per a hundred thousand live births. This is a number more than 10 times the estimated rates for other high income countries. Countries like Australia, Austria, Israel, Japan, and Spain, all hover between two to three deaths per a hundred thousand live births. The second important point is that the numbers are strikingly high in particular populations in the US, most notably Black women whose mortality rates are more than two and a half times that of white women. Hispanic women's mortality rates are at an all time high and surpassing those of white women. For other populations without appropriate data collection, we can't quantify the disparities accurately, and this is needed if we are to design interventions and allocate resources across all communities and populations. For example, data regarding American Indian women are rarely highlighted even though they have a high prevalence of poor outcomes. And in Asian populations, data disaggregation is needed to understand and interpret the true trends. The third important point, the one that really got to me in this new report, is that the trends are getting worse. More than 1200 people died of maternal causes in the US in 2021, a 40% increase from the previous year. And in every group examined in this new report across all races and ethnicities, across all ages of pregnant people, the trends are getting worse over time. So how are we to make sense of these numbers, and more importantly, what can we do to reverse these trends? I'm joined today by three national experts in this field, all clinicians dedicated to the care of pregnant people, scholars who have contributed to our understanding of the factors that underlie these numbers, leaders and advocates who have been outspoken on what must be done at the policy level, at the clinical level, and at the research level if we are to address this important health issue in the US. Dr. Audra Meadows is a practicing obstetrician gynecologist in San Diego, California. She is a professor of Obstetrics, Gynecology and Reproductive Sciences at UC San Diego School of Medicine, where her clinical education and research focus is innovating health systems and improving perinatal quality. Dr. Monica McLemore is professor in the Department of Child, Family and Population Health Nursing at the University of Washington School of Nursing, and a scholar in birth equity and policy translation. She spent 30 years as a practicing clinical nurse. And Dr. Joia Crear-Perry, an obstetrician and gynecologist and policy expert, and the founder and president of the National Birth Equity Collaborative. Welcome to all three of you, and thank you for joining me today for this conversation. Before we begin, just a note on language. We may use a variety of terms throughout this Q&A, including terms like maternal, mother, and pregnant women. We recognize that individuals across the gender spectrum may be birthing parents and that there may be many different ways in which gender identity can intersect with the issues we'll be discussing. I'm so grateful to all three of you for joining today and I'm really looking forward to this discussion. So let's start by discussing how we are in this situation of these very high maternal mortality rates of these rates that are quite disparate across different populations in the US, particularly Black women, and why these trends are getting worse. We're gonna get to all pieces of those and we hope you can give us recommendations on what must be done. But let's start with laying out how we got here. Dr. Meadows, let's start with you. When you are asked to talk about maternal mortality in the US and people say, "Why are we here? How did we get here?" What do you say?
- Well, we got here from a number of different avenues. When we think about maternal death, there are different causes depending on when a birthing person died. We look at different causes based on the race and ethnicity of the person. And so because of that, there are some clinical factors that we look at, but there are also larger systemic factors that we think about. The healthcare system that a birthing person is entering matters, the timing that they're entering into that healthcare system, the healthcare that they received before becoming pregnant, and then their treatment during their pregnancy and delivery matter as well. And so there are a number of different avenues to look at how we got here, just as well as there are a number of different avenues to look at how we're gonna get to reversing these trends.
- So I know one thing that people often point to is that we have an issue of accessibility to healthcare in the US, high rates of uninsurance compared to other places. And so I would imagine that's a particular factor, but that doesn't feel like the only set of factors that we're talking about because we also see these happening when issues of access to care is not the primary issue. Dr. McLemore, what do you say when people ask you, how do we get here?
- Well, I really appreciate the opportunity to clarify. I say there's three things. First of all, it has to be said that these deaths are preventable, right? That's the one word I would add that at a societal level, they are preventable and we actually could prevent people from dying from pregnancy related childbirth and complications. I would add, in addition to the clinical factors and the insurance factors, that there's a workforce factor that needs to be considered. And then we have to move away from the patient level factors. So we've blamed patients historically for their deaths, right? They come to pregnancy older and sicker and fatter, and they're not really sort of in the best condition. That's actually not an individual problem. It's a societal and a structural problem, right? Whether or not people have access to green spaces or to healthy foods or to insurance or to clean water, like these things are... These are policy and structural decisions. Then the workforce piece I think is really important. We've done a lot of research really looking at structural racism and how does mistreatment and bias really show up? Look, when we are clinicians and we're in conflict with pregnant capable people and their families, we're not paying attention on the things that really matter. We miss signs and symptoms of deterioration. We miss places where we actually could have acted more upstream and we actually really are not paying attention to the one thing that we should be paying attention to, and that is the birthing person. So to me, there's a workforce piece, there's a patient level factor piece that we need to move away from because it's not really the root cause. And then there's a societal piece that these are preventable deaths and there are things that we can do right now to actually ensure that people don't die from these complications.
- Right, I love what you've brought up there because we tend to think of this one patient at a time, one person at a time. It's reasonable to start there, but it oftentimes puts us in this trap of blaming a person for the sets of things they did or didn't do before they were pregnant or when they're pregnant. And it doesn't help us to necessarily think through what clearly the numbers speak to as the larger trends, which require some more systemic types of solutions. And then I really love that you said preventable, because especially as we see these rates rising, we shouldn't be trapped into thinking, well, this is because we should expect a rate of people dying in the US who are pregnant. So I love that. Okay, Dr. Crear-Perry, it's up to you now to tell us, what do you say to people when they say, how did we get here?
- You know, I as a medical student, as a resident, was taught in the late 1990s that there were three biological races. So if you think about that, if you let that sell in your spirit, that we were still teaching the biological basis at race in a state funded medical school. So I had no reason to question that we had different outcomes because if you perceive that the reason that people are dying in childbirth is because they're innately broken because there's a biological basis of race, then you make policies based upon that belief. So if your if-statement is, if you have hypothesis that if they have different kidneys or different pelvises. I was also taught that we have higher rates of C-sections because we have anthropoid pelvis versus white women having a gynecoid pelvis. So all these things were codified in textbooks. So even when you try to unlearn those things, you still have beliefs, behaviors, and policies where people show up in hospitals from Bogalusa, Louisiana to San Diego, California, and people perceive that they have different rates of hypertension because of a biological basis of race. So until we unlearn the harmful eugenics and white supremacy and patriarchy that we were taught in medical school, we will continue to harm patients.
- So I think what you've really pointed out brings both of the other comments really to light, because we have had this framing of the biological concept of race, it then leads to several other sets of things that this is sort of innate. It's inevitable that we're gonna see these high rates of death, that in fact, I've even seen people talk about while the US is different from these other countries because people are older, because we have a large Black population, and that that's why it's inevitable that these rates are there. So some of that insidious piece of the biological framing for race also leads us to not pay attention to the ways in which what we're talking about today is really a preventable set of deaths that are happening in the US. So thank you for bringing that up. And the historical piece that we've been taught that way many of us since the beginning from how we've been taught in medical school or other places. So we have a number of factors. We've talked about those factors related to the healthcare system. We talked about the factors that a pregnant person experiences before they're even pregnant, which might influence the other set of clinical factors that might put them at higher risk. Dr. McLemore, you also talked about what happens in the healthcare encounter, the ways in which biases might lead to differential types of care. I think one of the things that's really striking is again, that we're seeing these trends get worse over time, right? And we're seeing these trends that while we know that having access to care is better than not having access to care, we see time and time again stories of people who have access to care, who have the means to get care, people who are recognizable, and we assume they must have access to good clinicians, good care in the medical setting. Help me to understand how I should think about all these factors together. We don't wanna just react to a story in the news, but certainly the stories in the news are the ones that really crystallize for us, really, that in the US if you are pregnant, even if you are somebody who has means, might be somebody who we count in these numbers of people who've died in the US.
- I wrote about this shortly after Shalon Irving who died, and I have to say her name because this was a dual PhD, somebody working at the CDC on maternal morbidity and mortality issues, and herself, died a week after she had her daughter Soleil. And you know, this is a Black woman, dual a PhD, part of the uniform armed services, like had great insurance. Or when we think about the near misses, when you think about the Serena Williams' and the Beyonces, and people who had pregnancy related complications and told those stories publicly. The social aspect of Black skin is that you have a equitable relationship with racism, right? It's this idea that people think about it biologically, but actually it's social in terms of how you are treated by our system. Or when I think about Sha-Asia Washington in New York City who died, right? I mean, one of the other things we need to really talk about around maternal morbidity and mortality is the timing matters. I think Dr. Meadows spoke to this very passionately and importantly. The most preventable deaths that we are aware of in terms of things that we could do right now happened in the postpartum period, right? And so when we think about that, it's estimated between 40 and 60% of maternal deaths happen in a postpartum period, it's the time when we at least have our eye on pregnant capable people or postpartum folks, right? Everybody wants to make sure lactation is good and we've got that family bonding and that the baby's doing okay. We take our eye on the postpartum person, take it right off. And so we end up in a situation where if people are using different language, or they're not being heard and not being believed, then you get multiple visits to healthcare providers and emergency departments and practitioners and office visits, but we're still missing it. And so I think it needs to be named that even within maternal deaths, there is a window of time where they're even more preventable and we actually could do something about that with appropriate staffing, with access to care. It'd also be remiss not to talk about midwives and doulas. I mean, pregnancy is a normal physiologic condition. It's not a disease state. And so we spend a lot of time focused on the episode of birth, and perhaps maybe we need to build a health system and a workforce that could engage with people outside of that episode of birth.
- And then that's really why I was coming off mute because I was thinking about how we hyper focus on babies in this country. So we are not the worst in the industrialized world just because Black and Indigenous women are dying. A lot of white women are dying in the United States of America that if they lived in Norway, if they lived in Sweden, they would live. And they don't have different genes if they moved from here to Norway or Sweden. They don't have different behaviors, right? When you have a system that values people fundamentally differently, if you think about how we focus, so the fact that we only count maternal deaths up to six weeks and we know people are dying up to a year later. You think about the fact that Erica Garner died from cardiomyopathy six months after having her baby. She wouldn't even be counted at our statistics. They only go up to six weeks. So the biology does not even match currently how we collect the data and statistics. And when you said the 1200, it really hurt my heart because I thought about for years, I would say between 700 and 900 women a year die at childbirth. And I would complain that we are the only industrialized country that has a range 'cause we have not counted. We had not released an actual number in this country from 2007 to 2019. So we finally got an accurate number and now it's getting worse. So what does that say is it's really been happening this whole time and you add on COVID, you add on we've been isolated, we have so many factors. And then lastly, I'll just say Tori Bowie, when we think about naming their... And the reason we say their names is because when you just say things like 700, 900, 1200, we don't acknowledge the humanity. The actual person, that was a whole human being who was represented the United States of America in 2016 in the Olympics, was a champion and then died in her home in childbirth. And blaming her, shaming her, trying to figure out what was wrong with her is exactly why we have the worst outcomes in an industrialized world.
- So many important points made. I think the one that's really hitting home for me is the proportion of these deaths that are happening in the postpartum period. It always strikes me that that is one where somebody is also particularly vulnerable to our highly fragmented healthcare system, our highly fragmented public healthcare system. That that is such an important point both for intervention and the potential to help individuals in their health trajectory and can be a particularly challenging time for a whole variety of reasons. And one probably where our healthcare system is least well set up as it currently exists to do just that. And you've highlighted in various ways how other types of practitioners, how a focus on that period could be particularly helpful. Dr. Meadows, I know you're a practicing obstetrician gynecologist, and I'm a general internist, and I think about one of those fragmentations that happen after somebody delivers is that you're taking care of them up for a period of time. If they had hypertension, if they have something else, they might come to see me. And then there's that period after they deliver where, I don't know, are you seeing them or am I seeing them? Who's seeing them? How do you think about this system of care?
- Yeah, the system of care is broken. The system of care needs a lot of improvement and it needs attention to improvement. So there's a few different places where we need to enter into that. Like we think about public health and how when you have systems in place of good public health and public health improvements, you can see improvements in maternal outcomes and reductions in maternal deaths. When you also think about the system of healthcare, you have to think about as people are walking through doors. And so the work that I do, I wanna ensure that women can walk through any doors and have the same chance of receiving optimal care and optimal experiences as anyone else. And the systems of care have to be set up to be able to know that that is or is not happening in their systems. And currently, as it stands, many systems don't have that ability. Within OB departments, we don't even know exactly how many maternal deaths may be contributed to what's happening in our own facilities. We don't have data that's able to show us what's happening in a more upstream approach with severe maternal morbidity and some of those health conditions that we know are related to leading to maternal deaths. We haven't been able to look at our data. Oftentimes we'll say in the healthcare system, we have done well for a particular metric and for our population. But what we're not saying is we've done well for all populations. And so we have to have that data, and we have to be able to stratify that data by different demographics, by demographics that we know matter for the communities that we serve, because everyone serves different... The communities that we serve look very different depending on the hospital system. You have to have systems and data systems set up so that you can understand that. But before you get to those systems and data centers that are set up to tell us the information we need to know so we can improve our processes, we have to have leadership to support having the resources to do that. And so that conversation has to be had from the top and work its way into the clinical systems of care that we're working within. And it's really important because we're not able to look at different groups by age, by race and ethnicity, by demographic geography, by looking at who's new to this country, by looking at those who are coming in newly to our healthcare systems, then we're not able to tell that story. We're not able to really be able to adjust what we're seeing on a national level because we're not getting at it on the ground with the nuance of looking at what's happening in our healthcare systems. And to your point around thinking about the postpartum period, that's where people really tend to fall off of a cliff, right? So we focus on the birth hospitalization, they then go home and then oftentimes bringing people back in can look very different. There is a variation in care and the way that we hear issues and complaints from those who've just recently given birth, there are variations in care. And when or where we see people who have recently given birth who are experiencing those warning signs that many of the nursing groups are doing a great job of educating women on what those warning signs are. We need to be able to get them back into healthcare systems that can quickly and in timely fashion, identify what their needs are and then get them to the appropriate places and then administer that care. We know this to be true. I think many people have said it across the globe. Women are not dying from conditions we can't treat. They're dying from what we've already said are preventable causes, but we have to make the decision that their lives are worth saving. I'm quoting someone in saying that that has been famously stated. I think it's Dr. Fathalla who is a past president of the International Federation of Gynecology and Obstetrics. And with knowing that it starts with leadership. If we don't implement from the top that leaders recognize that there are disparities, leaders recognize that there's a problem and we need to put in place infrastructures within our healthcare system so that we can adequately address it, then we're gonna continue to find ourselves with this data. We're gonna continue to go slowly in that path and we can move quickly because there are some systems of care in place that are working. There are some perinatal quality projects that are happening that are working, and we've seen people close gaps or reduce numbers. But to do that across the country, we do need to have leadership. We do need to have buy-in, we need to have people educated in that space. And that's just one place of addressing what's happening with maternal morbidity and mortality.
- You said so many wonderful things there. I think the one that really resonates for me is that we don't make progress unless we define the problem measure to that problem, state our plans to sort of change those numbers and then as you say, have leadership and buy-in to develop plans to address them. And it is really striking to see the lack of numbers over time. As Dr. Crear-Perry said that we didn't have these numbers and then now to see them going up and certainly the only way to reverse this is to start to record what happened so that we can put systems in place. So really, I think you've made those points so clearly. You're all leaders in this field, and we've laid out how we got there. We've talked a little bit about why things got worse. Certainly the pandemic has made things worse, but I would say if you look at those trends, you see a big up-slope in 2021, but things were not headed in the right direction even before then. So I don't think we can say this is all COVID and fragmentation of COVID. That's certainly a contributor as it has been to many health states but not there. We're now on somewhere at least maybe on the downside on the pandemic faced with these very high numbers against a backdrop of very high numbers that we haven't really adequately addressed in the US. What would you call for that we need to do either as individual clinicians, as people who think about a research agenda, as people who are educators, people who are policymakers, all of those are people who are in our audience thinking about this patients as well. How would you say what we need to pay attention to in the next year, in the next five years, in order to make strides in reversing these trends? Who wants to start?
- Well, first of all, we haven't used the words reproductive justice yet. And so it needs to be said, right? I mean, we need to think about reproductive health rights and justice, and that means a human rights approach to understanding that we can actually make all of this different. So we need more people to believe that this actually can be different as policymakers, educators, researchers. Okay, that's number one. Number two, I mean, we've had the Momnibus, which is an a Momnibus set of bills introduced by nurses in Congress. And it has money in for healthcare perinatal workforce. It has money in for better data. It has money in it, and it keeps dying on the Congress floor. So when people ask me why voting rights are a reproductive justice issue, I said, because it determines the allocation of resources that we need to fix this problem. So I mean, that is the sort of other piece to this, right? So vote. And then the last thing I guess I would say is, as we start to really think about the election that's coming up, and as we start to think about like where we are politically as a country, we also have to remember that our Congress is politicized, but our citizenry is not. This is the year anniversary of the loss of the federal protections of Roe versus Wade. And it would be inappropriate for me not to mention that. We actually have an opportunity to actually reimagine health services for pregnant capable people. That's one of the weird gifts, believe it or not, that Dobbs has afforded us. We can now think differently about all the sort of like golden nuggets that we never wanted to touch because now we're in an entirely different landscape. So what does care for pregnant capable people look like, regardless of how sick pregnancies end and how can we start to really think about the needs of pregnant capable people and childbearing families in that context. I would like to push us to think differently about how we can use that as an opportunity to maybe rebuild or reimagine a health system that actually takes care of the needs of everybody grounded in reproductive justice.
- The piece that I'm struck by is really the voices of people who are thinking about the possibilities, who are re-imagining, who are thinking about the transformation, who are taking what we have now and not just saying, "Well, this is inevitable and the way it's gotta be, but we can think differently about this problem." And I'm hearing that in all three of you in the way you're approaching this. Dr. Meadows, your thoughts?
- Yeah, I'd like to add that I really wanna continue to underscore that we've seen some improvements. You know, these things don't fit neatly into the way journals are set up to receive information and to get published. So in comparison to the work that's happening, for instance, that I do publishing on that is very different than publishing on traditional basic science research, et cetera. And it's work that requires an investment in time, it requires an investment in resources and it requires some grace for the fact that there are some times where things work and there are times when we have some setbacks and then we need to be able to come out and show what are those insights of lessons learned of what's working and actually what's not working. And often in journals we don't publish what didn't work and what's not going well. So then we're often on our own sort of tripping over the same hurdles over and over unless we have the community to talk to each other and receive advice. And so journals could also support the work of making sure that we put out and promote what is going well, but also lessons learned and what to avoid in those limitations. I think it's really important that we all also think about, something Dr. McLemore said, which is, there are those of us who are in different spaces in this work and we have to all sort of respect that each other's work and join together in that. There are the re-imaginers and the reinventors, and that Dr. McLemore published an article to this tune. You know, and I stand squarely in a space of continuing to improve the healthcare system that we're standing within because birthing people are walking through doors even right now as we're speaking, having babies. And so we have to continue to lean in and work on those systems. At the same time, there needs to be folks who are re-imagining care and putting in place those structures for that re-imagined care so we can seamlessly make those connections. At the same time, there need to be people who are seamlessly thinking about the policies to support sustainability of that reimagined care and of the care that's happening right now, the positive parts of it. And that's not always talked about. We're not always talking about the trajectory of all those things that are happening and how they play to each other and how they support each other. And that's really important to be said. I've been at conferences before where you'll hear folks say, "We just need to tear down the system and start over." And it's like there are parts that probably do need to be completely overhauled, but there are parts that we can continue to have functioning so that those can support everybody from today into the future as well.
- Can I add a point to that though? 'Cause here's the other thing that we really need to say, and I've learned this from Kimberly Seals Allers. She's award-winning journalist and is now a tech developer and app developer. We have as much to learn from the lives of Black women and Black birthing people as we do from their deaths. And so to me it is really obvious that because Black people are not extinct, right? I mean you look at the numbers, you look at all that have happened to us through human history. We're recording this right after Juneteenth, right? This notion that because we're not extinct, then clearly there is some protective mechanisms that we're also not measuring and that we have as much to learn from the lives of living Black people as we do from the deaths of maternal morbidity and mortality reviews and all the other ways we're trying to understand this phenomenon. So I actually think we're missing the mark as scientists and as researchers if we are not also capturing the assets and the things that are actually working. Because if that's not informing our interventions, then I think we're missing the mark and we're gonna create some sharp angles. We're missing important data that could be very useful for a paradigm shift.
- We've talked about we have to reimagine and the transformation that's required to reverse these numbers that we're seeing. But what I've heard from Dr. McLemore and from Dr. Meadows is also just how important it is to also start and understand other aspects of health, of populations that we're talking about, of Black people in the US. But also that as we're working towards the transformation, every single day we walk into our clinical settings, we teach the next generation, we have to be doing this work every single day. And I think a lot of what we are trying to do with raising awareness about this issue is to have people to think about what they're doing in the various steps that they take every single day in order to think about how they can make a difference here. Any other points that you'd like to make that we haven't talked about today?
- I get in trouble by my fellow OBGYNs for talking about midwives and doulas all the time. And I think the reason is because we have not... What the midwives and doulas have been able to do is articulate the racism inside their field. We are just now as physicians starting to talk about racism inside of our field. So patients we don't address, we have not even addressed the racism within our own institutions and organizations. So until we start doing that, we're gonna see that people are gonna still only want midwife and doulas 'cause we have not undone our own and unlearn the harm that we cause as OBGYNs.
- And the point I would make is we would be remiss not to talk about either Dr. Kimberly Gregory or Dr. Karen Scott, actually Black women OBGYNs who have developed patient reported experience measures of obstetric racism. So such that if you can actually measure obstetric racism, then you can consider it as an adverse event independent of clinical events that occurred during pregnancy and childbirth. Like we have to tell people that pregnancy and childbirth prior to COVID-19 was the number one reason why people were admitted to hospitals and healthcare institutions 'cause we have like 4 million births a year. Most people will survive their birth. That said, doesn't mean it wasn't traumatic and that an adverse event didn't happen just because you lived and you have your baby, right? So it's this whole other conversation of there are some really vanguard Black women OBGYNs who are pushing the boundaries of this notion that obstetric racism in and of itself is an adverse event and that it needs to be addressed as such. And I think that that is super important.
- It is. And CDC will let you list it as a risk factor for death now. So that's huge.
- Yeah. Well, we had to fight real hard for that, but yes. So now when you do the MMRCs, when they review, you can list racism as one of the causes. And what it allows for you to do, and what we find is in places like Mississippi, they never listed, in places like in Massachusetts, 'cause our colleagues, they listed on every case. But it allows at least for a conversation within the committee, right? So imagine that you're a bunch of physicians, it's usually a bunch of doctors. Honestly, we know that. The MMRCs are highly overpopulate with doctors and they have to... At least somebody in the room says, "I think it was racism." That starts at least a conversation in Jackson, Mississippi, right? That starts a conversation.
- Yeah, I'd just like to add two patient reported experiences. We don't have system setups to even collect that information regularly and routinely. We do have patient satisfaction scores that are often reported and collected, but patient experience measures specific to obstetrics, not so much. And there are pathways to do that. Dr. McLemore listed two folks who also have scales and scoring systems. We can do better. We can collect that information alongside what's happening in terms of the clinical outcomes and we just haven't set that up yet and done it well. Some have. All of us can.
- Well, I have to say we are speaking about a topic that could leave one overwhelmed, a little bit paralyzed. After talking with the three of you, I have to say I'm feeling quite hopeful that if we can think about shining a light on this area, as each of you have said these are preventable deaths. This is a pattern that can be different, and we need more people engaged in this conversation to understand where we are, but also to think about what the possibilities are for the future. So I really thank you for each sharing your expertise and your experience and helping to educate our listeners and readers and those who will see you on this video. So thank you for taking the time today.
- Thank you for having us.
- Thank you for having us.