(Note – This is an unedited transcript. Please refer to the video of the event for accuracy.)
SARAH DASH: Good afternoon, thank you so much for joining us today. I am Sarah Dash and I’m the President of the Alliance for Health Policy and we’re really thrilled to have all of you here today. For those of you who have perhaps not been to an Alliance event before, we are a non-partisan organization. We are here as a resource for policy makers and the policy making community on a wide variety of health policy topics. And today we are really honored to be bringing, in partnership with the Commonwealth Fund, this briefing on maternal mortality and what the drivers are, and what the potential solutions are.
About 24 hours after I had my own baby, I got a small glimpse into some of the disparities that we’re going to talk about. I decided to walk her down the hall in her little bassinette and all of a sudden heard on the intercom, a code being called. And all of a sudden, all of the medical personnel started running down the hall and of course I got out of the way and they all ran down to the emergency room and of course I was incredibly concerned about what was going to happen. And a few minutes later, saw some of them walking up and walking back up, and then a few minutes after that, saw an African-American woman being wheeled up on a stretcher with a newborn baby on her chest. And was relieved that they were both — they seemed to be alive and hopefully well. And then a minute or so after that, as I was walking my own baby back to my recovery room, overheard a couple of medical personnel saying, yeah, there was a “stop and drop” down in the ER. And that phrase stuck with me and I don’t know any more about that woman’s story, I don’t know anything about her background, but it was one glimpse into the wide differences that can occur when it comes to childbirth in this country. And today, we’re going to hear some hard facts and hard statistics about maternal death and major morbidity, or serious injury. What’s driving it and what’s driving some of the very, very serious and tragic disparities in our country. So I hope that all of you will take away some new learning, some new insights, and some new ideas for how you can all go back to your day-to-day work and take steps towards solving this very, very important problem.
So with that, I’m very honored today to introduce a guest moderator for today’s panel. Today’s panel will be moderated by Dr. Laurie Zephyrin. She is the Vice President of Healthcare Delivery System Reform at the Commonwealth Fund, where she leads their portfolio on vulnerable populations. She’s a certified Ob/Gyn and has spent her career implementing evidence-based policies and programs to improve healthcare delivery across the nation. From 2009 to 2018, she was the first National Director of the Reproductive Health Program at the Department of Veteran’s Affairs, spearheading their strategic vision and leading systems change through the implementation of evidence-based policies and programs to improve the health of women veterans nationwide. So I want to thank Dr. Zephyrin for moderating today’s discussion. She’s going to go ahead and introduce our panel. Thanks, Laurie.
- ZEPHYRIN: Thank you so much. And thanks everyone for being here. It’s amazing to see a packed room and an audience on such an important issue. As you know, there are shocking statistics in this country. Women are dying during childbirth and in a country of this size and wealth and innovation, it is an injustice. We know what to do and we know there’s a role for policy and I’m so glad all of you are here today to discuss and hear those options.
I’m a physician, an Ob/Gyn, and a mother, and have engaged in transformation efforts locally and globally, and this issue is near and dear to my heart. We’ve really created, and we have a healthcare system that too often fails women. And so today we’re going to address some drivers and understand why, and share some solutions. This is also about race. Black women and Native American women are more likely to die when experiencing what should be a special journey for moms and their families. And most of these maternal deaths are preventable. At the Commonwealth Fund, I lead the vulnerable populations work there. And when I’m talking about vulnerable populations, I’m talking about people that are vulnerable to inequity, and that this vulnerability is created by systemic disadvantages and we’re going to address some of those disadvantages today because we know what to do. We know how to address this. Racism and implicit bias are really linked to these maternal outcomes and black women are severely impacted. We hear about the 700 plus deaths every year as a result of pregnancy and mortality. We need to talk about the near misses, severe disability from pregnancy. There are over 60,000 of them a year — of these women a year. What happens to these women? The trauma of having a complicated birth and how this impacts trust and well-being. And how it impacts cost to the healthcare system. We know what to do, we can intervene. It’s about decreasing maternal deaths, eliminating the disparities and also decreasing severe maternal morbidity. These deaths are occurring during pregnancy, at the time of delivery, and the majority after delivery when for many women, support is lacking. Imagine going home with a newborn without that support. Medicaid expires and they are left alone while they may be getting closer to death. This risk doesn’t end when the child is delivered. Moms matter even after birth. And we can prevent this. We see higher costs when we don’t prevent this; when we don’t intervene, and we know how to intervene.
So today we’ll explore how policymakers and health system leaders can shape solutions to get better outcomes for women. We’re incredibly fortunate to have this panel of nationally recognized leaders who’ve been working to advance maternal health for decades, and they are joining us today in our discussions. We will start with a patient-centered approach, Jennie Joseph, creator of the JJ Way. And she coined the term “returner toxic zones” and I have had the pleasure of hearing her speak and hearing about her work. She’s the Executive Director and founder of Common Sense Childbirth. Then we’ll share data and trends — Miss Shanna Cox, Associate Director of the Division of Reproductive Health at the Centers for Disease Control and Prevention. Then we’ll talk about why maternal health is the canary in the coal mine and the public health approach, Dr. Eugene Declercq, Professor and Assistant Dean of Community Health Sciences Department at Boston University School of Public Health. And then we’ll talk about health systems and patients and address solutions addressing racism and bias. Dr. Elizabeth Howell, Director of the Balvatnik Family Women’s Health Research Center Institute at the Icahn School of Medicine in Mt. Sinai.
So thank you very much for all of you sharing your work with us today. And, Jennie?
JENNIE JOSEPH: Thank you and good afternoon, everybody. I am really glad to be able to speak today and I’m thrilled that you’re here. Yeah, so I’m a midwife. I’ve been in this field for 40 years. I’m a British trained midwife, but I’ve lived in the United States in Orlando for 30 of those years. I want to talk a little bit today about maternal toxicity — maternal toxic zones and why that’s a big problem for the United States. Even as Sarah made her introduction and she talked about her experience as a newly delivered mother, how her experience looked really different to the woman that she described to us. But she also talked about the fact that the terminology that was applied to that situation — the “stop and drop”, there’s some connotations there. There’s some relevance there to using that type of terminology, because when we’re talking about equity, that terminology is key. And I’ll explain a bit more as I go along.
As far as I’m concerned, in America, what we’re dealing with, is maternal toxicity is zip code specific. It’s area specific. But it can also pop up. And so by that I mean, you could be, for example, like Serena Williams in the hospital and suddenly be surrounded by maternal toxicity because of who you are perceived to be. All right? So I’ll go back to the “stop and drop” example: Women who are under that terminology, that means something. Women who aren’t under that terminology, the term might be, oh, she had a precipitous birth and we implemented the precipitous birth protocol to support her. See the difference?
So what’s going on? Well, we’ve got our goals. We make them every ten years, and the government says, you know, look, what we’re up to is eliminating health disparities. In fact, for 2020 we are really ambitious, we are going to go ahead and achieve health equity. I’m just noticing this 2019. So not to be naughty, but just I’m pointing out that we have goals, but I wonder if we are really clear about how we are going to get there. So we know what’s going on. Our babies are dying. In terms of African-American black babies die twice as often. They are born too soon, they are born too small, they are born too sick to survive that first year of life. This is America. And of course, our women are dying. And I’ve got 50,000 on my slide, I’ve heard 60,000 for the women who nearly died. But I’m going to say it’s way higher than that. Because you know what? In America, women don’t talk about their experiences. We stuff that right down really deep and we try to manage, we try to go on. So I think that number could be doubled and we still might not be close. Because you — if you have had a birthing experience in this country, you know what I’m talking about. Whether you were a near miss or not. But think about your girlfriends, your family, your neighbors. They will have a near miss story for you. That’s how many we’re dealing with. So the social determinants of health play a part in the maternal toxic zones and environments. Just know this: Women and families are suffering whether it’s pregnancy — prenatally, during their actual delivery in the hospital environments or even out of hospital environments. Or post-partum. And the biggest problem we have is post-partum. We abandon women in this country, once the baby is out, two days after the delivery, they are tossed out of the hospital, and it’s like, “Take this child and go home, figure it out. And maybe we’ll see in six weeks for a post-partum exam.” And if any of you have ever had a post-partum exam, you know it’s a PAP smear. What’s a PAP smear going to do for you when you’re newly delivered, possibly already suffering post-partum depression, struggling with breastfeeding, or worse yet, already back in the workforce. We have a problem.
So it seems odd to me in a developed nation — the most developed nation in the world, that we have to talk about making pregnancy safer for women. Particularly women of color. I’m in Orlando, Florida. I arrived 30 years ago and I’m still there, and I’m still trying to figure out why. But in the meantime, what we did was we worked on how can we make it more accessible so that the care that’s missing — which is really a support that’s missing, right? You know, medically, we’re sound. Medically we’re great. We spent a fortune on medical practice. But the support that is missing is what’s causing the danger. I’m a midwife, so I use the Midwifery Model of Care, but the Midwifery Model of Care is simply a patient-centered care. Women-centered care. It’s culturally correct. It’s cultural humility. It’s using the senses that we typically don’t bring into medical practice — compassion, listening, responding in a humanistic way. Those are the things that keep things safe. I have a birthing center where women have an option and choice for natural birth if that’s what they want. The majority of my patients actually choose hospital birth because American women deliver in hospital, and that’s fine. I don’t have any problem with that. But what I do know is that having access to prenatal care with midwives, having post-partum care with midwives, means that you have somebody who’s paying attention to you across the entire experience.
The other thing we know is that we’re doing trauma informed care. Why? Because like I just said, American women are traumatized around this issue and we are trying very hard not to retraumatize the women that we see. So it’s safe care, it’s respectful care, compassionate, culturally sensitive and non-judgmental — back to that terminology. Right? Terminology is really, really rife in our work in obstetrics.
So we created the safety from providing access to what we call “perinatal safe spots”. And a perinatal safe spot is essentially going to operate from these four cornerstones. Always, first and foremost is access. You have no barrier to care. There is not one single reason you can think of, why we will tell you, no, you can’t come in. The immediate access, unrestricted access, allows them to build trust and connections. And once you do that, once you connect with a woman and she sees that you care about her, she is going to disclose, she’s going to be open, she’s going to be compliant, and she’s going to be able to thrive. Once she’s in that role, we can go ahead and give her the information that gives her the knowledge to move through her pregnancy in post-partum with much more power and agency. And the empowerment is always what we see as the end result.
But here is something else: We applied the same principles to our staff. That’s a big shift. The women that delivered this kind of care are empowered to do it in the way that’s best for them, but in the way they also are fulfilled in their job. These are some of the women from our clinics. These are women from the community who move on now into medical course practices. They move into the pipeline for care. And they also deliver the care in a culturally congruent way. Our stats prove that what we’re doing is working. This is a study from 2006. We’ve been doing this a very long time.
But even though it’s not easy to see on the graph, essentially what happened when we took 100 women, we enrolled them in this study, we were able to see that the women that were in our care compared to the county and the state of Florida, were absolutely blowing it out of the water. We had zero prematurity amongst the African-American women and Latinas in our practice, in that study. Zero. Zero low birth rate babies. Compared to our county at the time, was nearly 20 percent of prematurity in 2006. So it wasn’t dropped a couple of points, it wasn’t just when we moved it along and you know what, we made a little difference here, a little dent there. No, we eradicated prematurity out of a population of women who were at high risk for a premature birth. This is what they look like. These are women from the practice. These are women that represent who we’re serving. Who would not normally — you will not see pictures of black women looking so healthy, so strong, so empowered, and so robust. And at the end of the day, even though my population of women are choosing midwifery care, they have realized that this the safest way, the most expeditious way to get to the other end of this experience alive and healthy, and thriving. So absolutely the difference between regular care and patient-centered midwifery model care, saves lives. Thank you.
SHANNA COX: Good afternoon. And so I’d like to thank you, Jen, for engaging us with that presentation and the work that you do with the communities for moms and babies. And so I’m going to take a high level national picture of maternal mortality, what the data tells us, and what the gaps in the data are. So we have apps that can deliver groceries to our homes and the hottest gadgets to your front door. But for all of our improvements and technology, maternal mortality in this country is not improving. So while it’s important to understand this data that I will present to guide us towards understanding these tragic events, it is important to acknowledge that each of these counts are heart wrenching personal stories. These are women, partners, valued family and community members, who are owed the best possible outcomes as they engage on their childbirth journeys. And so we need to better understand what the drivers of maternal mortality are, and how we can prevent them.
I want to start with some data from our pregnancy mortality surveillance system, or what we call the PMSS. The PMSS is the best current source of national information on maternal mortality. It improves on just looking at death records, because we do additional linkage with birth and fetal death records, and we review pregnancy related deaths up to one year after pregnancy. All 50 states, D.C. and New York City, voluntarily share their information with the CDC, where we summarize it and review it with medically trained professionals to determine the cause and timing of death. The PMSS allows us to understand patterns in the data and identify populations that are most impacted. So here we share the differences in pregnancy-related deaths by race, ethnicity, and calling out the higher rates of maternal deaths among African-American and American Indian Alaskan Natives who are three to four times more likely to die of pregnancy related causes than white women.
We also see differences by age with increasing rates in pregnancy related death as women get older. But what I want to particularly call out here is that the disparities that is the gap between white and black and African-American women, or American Indian Alaskan Native women, actually increases as age increases. It is hypothesized that this may be due to what we call “weathering”. That is chronic stress and exposure to implicit instructional racism increase the risk of maternal mortality due to age at a greater pace among black and African-American women and Alaskan Native American women, than among white women.
We also see differences in maternal mortality rates by education. This slide is striking because it shows generally the rates are lowest among those with at least some college education, but I would like to point out that African-American, and again, American Indian Alaskan Native women with a college degree have a higher maternal mortality rate than white women with less than a high school education. The traditional factors that should be protective for these groups of minority women are not.
There is also wide variation in maternal death rates by state. Due to PMSS data agreements, we cannot release identified state estimates, but the geographic disparities are striking. And even when we group states from lowest to highest pregnancy related death rates, there are still disparities by race. So while a state may look better overall when compared to other states, things are not equal for all women within the states.
So early last month, CDC released a vital signs report that documented the leading causes of death by time period, where it showed that heart disease and stroke caused the most deaths overall. Obstetric emergencies such as severe bleeding, amniotic fluid embolism, caused the most deaths at delivery, and the week after delivery, severe bleeding, high blood pressure, and infection are the most common. Cardiomyopathy causes the most deaths one week to one year after delivery. However, when we further look at that late post-partum period, the proportion of deaths among black women is higher than those among white women, and that’s likely due to a higher burden of these cardiomyopathy deaths. So that’s why it’s important for us to really evaluate the data in a way that helps us tease apart what the drivers of the disparities are. So there are some limitations to the pregnancy mortality surveillance system. It is built upon vital statistics, and so it’s limited in its ability to describe why these deaths are happening. So for any problem to be solved, we know that strong data is needed. And what is old is new. The maternal mortality review process is not a new process, but support for these review committees have waned over time, resulting in a very piecemeal approach. These multi-disciplinary committees review both clinical and non-clinical data about a maternal death, to provide a deeper understanding of the circumstances that surround each maternal death. One of the unique abilities of the maternal mortality review committees is the ability to determine preventability. And also, contributing factors, so we can prevent future deaths. So CDC is working to support these review committees to ensure that we have robust data to better understand and prevent maternal mortality.
The data that I noted earlier from the PMSS does not capture data due to mental health conditions very well. But review committees are able to dig deeper into the data and find that mental health conditions contribute to about seven percent of pregnancy related deaths mainly in the post-partum period. But I also want to point out differences in the leading causes by race. Whereas mental health and substance abuse are leading causes of death for white women, they have a much lower impact for African-American women. So we have to be careful that we do not shift our focus to one cause, without looking holistically at all of those drivers of disparities, because in some ways, while it may be well-intentioned, we may end up exacerbating disparities.
So maternal mortality review committees, again, can help us identify opportunities for prevention. There is not one thing or magic bullet, but the data shows us that pregnancy related deaths are a multifactorial issue. In fact, review committees identify about three to four contributing factors per pregnancy related death. These contributing factors are found at the patient, provider, facility, health system, and community levels, and so are the recommendations of how we can prevent them.
So one of the essential pieces that was identified through technical assistance to CDC, was the need for a common data platform to review committee abstraction and review. So CDC developed a common data system called Maria, to support these review committee functions. We’ve built out a mental health and substance abuse module to help states review and capture this data better. We are funding five states as part of the response to the opioid epidemic to review all pregnancy associated overdose deaths, and identify opportunities for prevention, and we hope to leverage these lessons learned for other topics including collecting data on social determinants of health.
All in all, with more robust data, we can better understand and prevent maternal deaths and ultimately improve access to quality care. One strategy to improve clinical care are perinatal quality collaboratives, or PQCs, which are a multi-disciplinary teams working to advance the evidence and inform clinical practices and processes and address gaps in care. With buy-in from hospital leadership providers, and a wide variety of stakeholders including patients and families, these successful projects can be scaled up statewide. The culture of care is shifted in participating facilities with the ultimate goal of population improvement in maternal and infant health.
So to close, I just want to mention the value of partnerships — clinical, public health, policy makers, non-profits and community-based organizations can all play a role in supporting the collection and use of timely data and translating these recommendations into action. Thank you.
- DECLERCQ: Hi, I’m here not just as a researcher, but I’m also a member of the Massachusetts Maternal Mortality Review Committee, and the Perinatal Quality Collaborative. So these aren’t theoretical issues. And I’m basically here to say that we don’t have a maternal mortality crisis in the United States. We have a women’s health crisis in the United States of which maternal mortality is an important piece of, and sort of the thing we’ve drawn our attention to. But it’s a much bigger problem than that. So let me get into this.
Clarifying some language around this first. There’s three terms that get thrown around interchangeably — pregnancy associated mortality — that’s the death of any woman in pregnancy out to a year afterwards for any reason. Hit by lightning, any reason. It’s the place that maternal mortality review committees begin. And then the determination gets made of this: Which of those are related to pregnancy? And what Shanna was talking about, the work that’s done at the CDC, focuses on pregnancy related mortality. That’s an important piece. And the description of the data set at CDC is the best data set, is completely accurate. But there’s also maternal mortality, and that’s an international standard. And that has the same criteria. A death of a woman during pregnancy, during birth, or up to a year afterwards, is the definition of the pregnancy related mortality. Maternal mortality goes out to 42 days. And keep in mind those terms get used interchangeably and they are not the same thing. They refer to different things in many instances.
So let me get into five points I’m going to try to make in six and a half minutes. First, the persistence of racial disparities. This is just to illustrate the fact that this isn’t a new phenomenon. This has been going on for decades and decades. There’s two lines on this graph — one, the blue line, shows the disparities in maternal mortality. The red line shows disparities in infant mortality. The infant mortality ones are embarrassing enough at two to two and a half times higher. The maternal mortality ones are inexcusable at three to four times higher. And in the most recent study that came out, it’s about three point three times higher for black mothers, compared to white mothers.
Shanna thoughtfully has covered some of my things, so I can go through them very quickly. The manifestation of those are in key areas of cardiomyopathy, embolism, issues associated with hyper tension. Now, let’s put this in context: This is a comparison of the United States to other countries. And you see these familiarly. Oftentimes they’ll say we’re 40th or something, but that comparing us to countries that have no actual births in them — Andorra and San Marino and Iceland. Let’s look at countries that are comparable: 300 thousand births and wealthy countries. And when we do that, we’re no longer 40th, we’re simply last. Among all of those countries, the issue of disparities arises because it’s often said, well, the issue in the United States, we’ve just said, is profoundly disparities. And so maybe that accounts for the difference. Well, if you look at this data and you say, what if we did the same comparison for just the white mothers in the United States? Let’s do that. If you did that, then instead of ranking last, United States would rank last. And that’s important. Both pieces are important. This is not to underestimate the importance the disparities, but it’s to remind us that there are deep systemic problems in the United States that go beyond disparities, that are exacerbated by racial animus, but are not solely about racial animus.
Next point to consider: We need to think about this from a public health perspective, more than a clinical perspective. Why? This breaks out when mothers die. And Shanna presented a little bit of it. This is another way to look at it. About a third of the deaths are actually occurring during pregnancy. About a third occur at birth and in the week after birth, and about a third occur between birth and a year afterwards. When you think of it that way, then it’s really important that the efforts we’re making to improve hospital care are going on, but they won’t solve all of the problem. The only way we solve the problem is by having integrated systems of care that care for women, comparable to what Jennie was talking about, from the beginning of pregnancy all the way through post-partum. And the only way we do that is by thinking of this as a women’s health problem, as opposed to a pregnancy-only problem. This has more data than you would ever want. I will gladly discuss it afterwards with people. But it just shows, if you look at it, on the left-hand side, this is causes of death over time. And on the left-hand side, what you see are the factors that are going down, are almost all of those that are related to clinical care. And the causes of death that have been going up in recent years are almost all associated with more public health oriented kinds of issues, of post-partum care. So again, this is not to underestimate the wonderful efforts that are going on led by ACOG and the American College of U.S. Midwives, to try to improve clinical care, but it won’t be the end of the problem if we only do that.
I’m actually not going to talk about this one, Shanna talked about this, but look at the differences in the timing of death. We have different problems at different points in time. The reasons that women die in pregnancy is not the same as the reason women die at birth. It’s not the same reason that women die post-partum. So again, you need a system that covers all of those things. And it’s more than maternal mortality.
So this is my take home one. This is deaths of women. Overall deaths. It’s not pregnancy related, just overall deaths of women between 2010 and 2016 for women 25-34. And what you see is those rates are going up. Especially in the last three years that we had data. And again, this isn’t just maternal mortality, it’s all causes of death. And they are going up rapidly. They are going up — overall, they are going up 22 percent in the last six years. Why? Well, this is the leading causes of death. And at the top, you see that overall difference about 22 percent, and you see the reasons related to pregnancy and this measure does not capture all the maternal deaths. But you see that the overall death rate is actually going up faster than the rate for pregnancy alone. What is going up fastest — three areas — accidents — and I can’t read that from here, but I’m sure it says chronic liver disease. Public health issues. And violence. These are factors that need to be considered. Again, better clinical care will help, but it won’t end it.
So what can we do about this? I have a minute and a half to solve this. One of the ways to think about this, I think this is a critically important slide, in that it shows the coverage women have, and the lighter blue line is the proportion of women who are uninsured. Now, this is pre-ACA, but what it is, prior to being pregnant, about 25 percent of the women at that point had no insurance coverage. As they become pregnant, you see that line goes down, and the Medicaid, the dark blue line, goes up. Once they have their babies, that 25 percent figure falls to about 10 or 11 percent. Look what happens after. Within two or three months, those rates are back up to 20 percent. Why is that, you say? Since you asked, this is the breakdown in how states apply Medicaid. The blue lines represent what is necessary to be below the proportion of the poverty level you need to be below in order to qualify for Medicaid if you are not pregnant. The orange lines are the levels that are necessary to qualify if you are pregnant. And what you see is, states have done a nice job of incorporating women into the system if they’re pregnant. But at the same time, what will happen is typically 60 days afterwards, the other rates kick in, and they are thrown out of the system. But keep in mind, we just said that about a third of the deaths are happening after pregnancy, that we’re talking about. And so one of the ways to think about this, is if we’re going to address the problem, maybe we need to keep these women in the system longer. Or maybe we need to make it so that they are in the system all the way through.
So since you asked for policy recommendations: One, use maternal morality review committees to not only look at pregnancy related deaths, but also pregnancy associated deaths, to try to identify where they can find solutions to problems. I review those cases and they go way beyond clinical care. Secondly, use perinatal quality collaboratives to try to improve data systems. We are doing a terrible job of tracking it. We have not published an official maternal mortality rate to the United States since 2007, and these are all data problems. Internal data problems. It’s not a sinister conspiracy, it’s just data problems. Third, we have to fund a systematic approach to listening to mothers. If you want to have a way to try to make these sustainable, not just one-off efforts, but to make them really last, you have to incorporate the voices of mothers into the programs to understand how you can have an actual impact on them. And then finally, policies that keep women in the system. Especially women of color in the system. Or maybe we have a system where they are never out of the system all the way through. And that’s the way we can address this problem.
If you want these slides, I updated some of the slides that were handed out. If you want these slides and tons of other data, that’s the place to go to. It’s a website I do with students called Birth By The Numbers. And so the slides are free, available, use them as you will. I go up to strangers in the street with them and try to talk them into this. So you wouldn’t be the first person. Thank you.
- HOWELL: Hello and thank you so much. I am very happy to be here. So I’m an Ob/Gyn Health Services Researcher and so this issue has hit home for me for many, many years.
Over the last couple of years, you guys have been inundated with media attention about how hospitals are failing our mothers, how our society is undervaluing pregnant women, and these persistent and sizable racial and ethnic disparities in maternal mortality. This picture is probably familiar to many of you, it’s of Dr. Shalon Irving who was a CDC Epidemiologist who studied health disparities. She died three weeks after childbirth from complications of hypertension. Her story was reported by Nina Martin in ProPublica. These persistent disparities, the fact that black women are three to four times more likely to die from a pregnancy-related death, are long standing, as you’ve heard. It’s the largest of all the population perinatal health measures in terms of disparities, and these disparities are even more pronounced in some of our cities. In New York City, where I work, black women are eight to twelve times more likely to die from a pregnancy related death. Latinas and Asians also have elevated rates.
So you heard a lot about causes of death that cardiovascular disease, that hypertension causing strokes and seizures is what’s killing our mothers. I think this slide, which was highlighted earlier, just reminds us that this opioid epidemic and suicides is really an issue, and it’s really hitting home in a number of states on the maternal mortality review committees. In fact, in Massachusetts they reported that between 2011 and 2015, deaths from opioid use increased, I believe, by about 40 percent.
Another very important part of this story is that for every death, over 100 women suffer one of these severe complications related to childbirth. We’re talking about seizing and strokes and bleeding so much that your uterus has to be removed to save your life. Getting a blood transfusion. This effects over 50,000 women every year in this country. And similar to what we see in terms of maternal mortality, racial and ethnic disparities exist. In New York City, a black woman is about three times — and a Latina mother is nearly twice as likely to have one of these events during her delivery hospitalization.
You heard a little bit about this earlier, but another really important message is: These disparities are not explained by socioeconomic status. If you look at education attainment in New York City, as you can see here on the X-axis, and severe maternal morbidity events, a black woman on the right of your screen, in green, is nearly three times as likely — again, the black woman has had a college education — than a white woman with less than a high school education, to have one of these events.
So this is a very busy slide and it sort of leaves you with a notion that this is a complex issue. We are not going to solve disparities overnight. But we need to start thinking, and thinking critically about what are the root causes of this, and how can we address it?
So there’s a growing recognition in our healthcare system and in our society at large, that racism is an underlying cause of these disparities. I’m a health services researcher, I’m an Ob/Gyn health services researcher, so I often think of things that the patient, the community, the clinician and the system factors. So when we are thinking at a patient level, we can think about things like education and the age. We can think about stressors. We heard a little bit about the weathering hypothesis earlier. The idea that black women age more quickly because of exposure to chronic stress and racism. We can think about the community level and the neighborhood. The built in environment. We can think about clinical factors like bias and communication skills. And we can think about system factors like access, transportation. All of these factors combine to the health status of a woman before — right when she becomes pregnant. And some women have a number of co-morbidities that put them at additional risk such as hypertension and diabetes. All of these things interact with the healthcare system at different touchpoints, and you’ve been hearing about care across the continuum. Preconception; before pregnancy. Antenatal; during pregnancy. Delivery and hospital care on that labor and delivery unit, and that postpartum hospitalization, as well as postpartum care. All of those are time points in which we can intervene to try to prevent these sever maternal morbidities and mortalities.
So as you heard, for a long time we’ve had a lot of evidence now that — telling us that over half of these deaths are preventable. And in fact, this recent CDC Foundation report that summarized maternal deaths from nine states, found that greater than 60 percent of deaths were preventable, and data also suggests that at least a third of these severe events are preventable. This makes hospital quality a really important contributing factor. And there is a growing body of research that suggests that black mothers deliver in a specific set of hospitals in this country. And those hospitals often have worse outcomes for both black and white women. Now this is true overall in the United States where about three-quarters of all black women deliver in a specific set of hospitals, while less than 20 percent of white women deliver in those same hospitals. In New York City, a woman’s risk of having a life-threatening complication, a severe maternal morbidity, can be six or seven times higher in one hospital than another. And black and Latina mothers are more likely to deliver at hospitals with higher rates. Here is just some data from New York City showing you the hospitals ranked from lowest to highest morbidity. Again, the hospitals have been — patient case mix has been accounted for in these slides, shows you the six to seven fold variation and as I said, black and Latina woman, much more likely to deliver in the cluster of hospitals on the right of your screen, far less likely to deliver in the hospitals on the left of your screen, which are the low morbidity hospitals. And in fact, we think this difference in delivery hospital explains nearly one-half of the black/white disparity in New York City, and nearly a third of the Latina white disparity.
So what can we do to reduce disparities? I think we need to think about this. And I do — I think about this in a quality of care framework. And these crucial time points to optimize women’s health, providing access to safe and reliable contraception that’s in a culturally sensitive manner. Providing pre-conception care, so that we optimize women’s health. Thinking about the antenatal period and access to high quality antenatal care, to subspecialists for those women who have significant health issues, as well as new models of care such as group prenatal care, and other things that sort of capture and engage women earlier in the process. We can think about the tools and utilizing things we already know how to do in hospitals and labor and delivery units. Quality improvement tools. Standardizing the care we provide to women who have severe high blood pressure, and come in. Disparities dashboards where we take our quality metrics, we stratify them by race and ethnicity, by insurance, and we ensure that care that we’re delivering to all women is appropriate and equitable. And finally, access to postpartum care. We’ve heard about the importance of Medicaid coverage and extending that, and this crucial period of time where we can optimize women’s health, set them up so that they have a healthy next pregnancy and a healthy life.
So to conclude, I’m just going to — I’m not going to conclude yet, because I forgot to mention one of the most important things. You heard about Serena William’s story, and I wanted to layer on that in my little schematic, we can’t forget about eliminating racism and bias, the importance of enhancing communication with our patients and engaging community.
So just to end, you heard a little bit about perinatal quality collaboratives, which are a major tool to try to improve maternal and child health, and there is a growing focus on disparities and we are so thankful to the CDC for all of their work and support for states on these collaboratives. In addition, there is a program at the federal level called the Alliance for Innovation and Maternal Health. It’s a cooperative agreement between HERSA and the American College of Obstetrics and Gynecologists. It’s a data driven, quality improvement initiative that aims to standardize care on labor and delivery units. It targets some of the most preventable causes of death — hypertension, hemorrhage, venous thromboembolic disease. It currently partners with state departments of health, a number of health systems across the country, and has the potential to reach over 50 percent of U.S. births. This body aim took on creating a bundle and providing a resource to hospitals and health systems across the country, in an effort to try to reduce disparities.
And I’m just going to leave you with the key recommendations from this bundle, the importance of collecting self-identified race and ethnicity in our electronic medical records and in our medical records. There is a lot of research about how we should ask these questions so patients understand why we’re asking, and how we should educate those who are asking these questions of patients, so they do it in a culturally sensitive manner. The disparities dashboards, the maternal mortality and severe maternal morbidity reviews. The importance of community participation and quality and safety committees, implicit bias training, and promoting a culture of equity. Thank you.
- ZEPHYRIN: Wow, thank you to all of our experts. So this is a heavy, complex issue, and for those of you, if this is the first time you’re hearing it, it may be seem intangible, it may seem that we can’t address it. But there is a lot that we can do and our experts definitely talked about it. And so I’d love to open it up to questions, but while we’re gathering questions from the group, I’d like to start out with a question since all of you are policy makers and policy influencers in the room. What can policymakers do? Jennie, you talked about community and community was sort of weaved through many of these themes. What can policymakers do from the community perspective to help the community’s impact on this?
JENNIE JOSEPH: I believe we need to really recognize that the community based organizations, and even community individuals are on the ground already and on the frontlines of this crisis. We have the answers. We know what to do. We are in action doing it. And I think we look at how do we recognize that the community level is where this all starts, then we can then fund and support programs that are actually able to prove that the evidence-based practice that they’re using, that the support systems that they implement are integral to catching these problems upstream. So I believe it’s important to first of all identify these organizations, but then also fund and support them and maintain them and now that in the collaboration of community organizations with the medical systems, the social support systems, addressing the social determinants of health will impact this problem overall.
- ZEPHYRIN: Thank you. And you talked a little bit about sentinels in the community. Can you share a little bit about that?
JENNIE JOSEPH: Sure. So if you think about it, people in their communities know where to go when they’re pregnant. They know this Miss Jones down the way, she has a clue. They know about their doulas. They know doulas are women who support pregnant women and postpartum women by providing non-medical care. They know about who has a clue about what we should do if we’re pregnant. And they find each other. Those people are also the ones that are the navigators. The health navigation piece is really important. And when somebody recognizes, this woman is at risk, this woman has a problem, she often does better — she will thrive and survive through the system if someone is with her or standing behind her, or her family, or her partner. So it’s almost like an underground railroad, if you will, of folk who are already out there on the ground doing this support work, recognizing where people need extra help and supporting the referral to be the safe — like, we know, oh, don’t go to this hospital, go to that hospital. Don’t go to Dr. So-and-So, because you can’t get in there, or they don’t take that managed care plan. People are doing this work on their own, trying to find resources and support for each other. And at the same time, sounding the alarm when something is wrong. So think about that. Non-medical providers are providing support for medical systems, because the medical systems aren’t putting themselves into the place of being out there on the bottom, on the ground level, on the grassroots level, first and foremost.
- ZEPHYRIN: Thank you. Those are excellent points. Just a remind to everyone, there are green cards on your tables, where you can write down questions and those will make it up to this way. Thank you, Jennie. And there is a lot of work ongoing around funding community health workers, and funding doulas, and thinking about models of midwifery support as well, that relate to what you’re talking about.
Question for Liz: You spoke about how in New York City there’s specific hospitals with poor outcomes. What makes these hospitals have poor outcomes? Are they Medicaid hospitals? Are they understaffed? Are they hospitals with predominantly Medicaid patients? Can you tell us more?
- HOWELL: Sure. So we’ve found this six to seven fold variation in New York City, which was not explained by the traditional characteristics. So teaching status, volume of deliveries, which you hear about nationally, because there are some hospitals that have very small number. But in New York City, most of our hospitals have a fairly high number of volume. So the sort of traditional characteristics did not explain it. What we have done, we’ve done a lot of stuff looking more closely — this is ongoing work looking at Medicaid. And while it is associated — hospitals with higher percent Medicaid may be associated with having higher rates — you have hospitals that have high percentages of Medicaid, very high in New York City, that have high rates of severe maternal morbidity, and low rates — different hospitals. So it by itself also doesn’t explain. It speaks to this issue that we have to do further work, and our team is doing a lot of qualitative work going into a sample of hospitals in the high morbidity cluster, and samples of hospitals in the low morbidity cluster, to try to understand, you know, safety culture, the way they handle adverse events, evidence-based practice use, some of the quality things, as well as issues around disparities and workforce diversity et cetera. To try to better get a handle on what’s going on in New York City.
- ZEPHYRIN: Thank you. This question is for Shanna. There seems to be a variation in the effectiveness of state maternal mortality review boards across states. What are the most important attributes of effective states and their maternal mortality review boards? Can you share that with us?
SHANNA COX: So some of the technical assistance that we’ve been providing to states are around standardizing the way that they collect data, ensuring that they have appropriate authorities and protection, support for review committee members, abstracting data in a timely manner, and so we’ve collected all of these resources on a website called Review to Action, and really been able to help states go to this website, use these resources that show what it takes to become a full, sustainable review committee. So there are a plethora of information that states have to collect and review as part of review committees. So looking at the disciplines that sit on your review committees, and making sure it’s multidisciplinary, so again, there are a series of things that again, across the spectrum of things that a review committee has to look at, as far as how they review the data, how they look at preventability and recommendations, and then ultimately how they use the recommendations that they find out of these review committees and translate them into action.
- ZEPHYRIN: Thank you. So this is actually for all of the panelists: If you could have a magic wand and redesign postpartum care, what would it look like. I’d love for you to address the sort of newish term that I’ve been hearing around the fourth trimester. And the policies that would help with supporting this fourth trimester of care. Liz, do you want to start?
- HOWELL: I think Gene mentioned this, I think it’s crucial that we extend Medicaid coverage for that first year. So this fourth trimester, this notion that getting women back, you know — they say that the estimates for Medicaid population is somewhere between 50 and 60 percent, and then in some cities, less — and in some plans, less than 50 percent are coming back for this postpartum, visit. This is when the woman who had gestational diabetes is supposed to be screened again because she is at a much more elevated risk to have type two diabetes, right? This is the woman who had severe hypertension, who had an episode during her delivery. She’s lost a follow-up. What’s going to happen to her during her next pregnancy? This is a crucial period of time to optimize women’s health and to do something about this maternal mortality crisis that — and maternal health crisis, and women’s health crisis that we’ve been talking about. So I think Medicaid is one of the key — extending Medicaid is one of the key things. Also, this paradigm of having a six week postpartum visit, where did that come from and why do we think about it that way? There’s a lot to it, but even ACOG has now changed the thinking about that, and recognizing that it’s much more important for us to have an earlier visit with our patients — much earlier. And we’d always done that for cesarean section patients, to do a wound check. But it wasn’t a comprehensive connection. Thinking about new ways of engaging patients, that they don’t always have to come to the office, is ways to engage Telehealth or other things to try to engage them. And then having another visit further out and more intensive and accessible care during that full year.
- ZEPHYRIN: Thank you. We have someone at the mic. Please introduce yourself.
AUDIENCE MEMBER: Hello, my name is Susan Kennedy, I represent Academy Health. I actually lead, along with several of my colleagues, a network of Medicaid medical directors. And this particular fall, actually, we just decided that the theme, on behalf of the steering committee’s request of seven Medicaid medical directors that in fact, it should be around maternal mortality and morbidity. So clearly it’s on their radar across the States as well. The question I have is: I also currently lead and just finished two projects that leverage these Medicaid medical directors for the CDC on two other topics not related to reproductive health. However, there clearly is a growing understanding and interest at the CDC on how to begin collaboration between public health and Medicaid at a much higher level. And that said, I think this is an area too. And so you recommended — Dr. Howell, you referenced a HERSA and ACOG study. I’m curious to know if Medicaid — how that’s been disseminated out to Medicaid agencies, I think they’d be interested. And then also, I’d love your thoughts, Shanna, on how better we could include Medicaid and Medicaid medical directors in addressing this critical issues.
- HOWELL: So I think you’re bringing up a really important point, and the Alliance for Innovation in Maternal Health, which was through ACOG, started out — I believe now they’ve reached and started to recognize the importance in the role of payers and Medicaid. They hadn’t done very much of that in getting it out. It was much more partnerships with the Departments of Health and health systems is the way of initially getting this out. These standardized practices. But I think you raise a really important point that if we don’t sort of think about doing this in combination with the payers and particularly Medicaid, we are not going to get where we need to be.
SHANNA COX: Thank you. And so I think there’s a lot of opportunity for collaboration with Medicaid and public health. CDC has a long-standing initiative such as the 618 initiative and other activities where it’s shown that if you have that high-level engagement between public health, Medicaid, and other leaders at the state, that’s where there can be some movement for policy. So I think Medicaid didn’t think about quality indicators. I think we’ve all talked about data and looking at your data. Looking at your data stratified by race/ethnicity, so you can ensure as you’re implementing quality improvement initiatives, that improvements are happening for all populations in the same way. Looking at things such as value-based care and kind of what is the data showing in regards to not only maternal mortality, but as everyone’s mentioned, severe maternal morbidity. Because maternal mortality is just the tip of the iceberg. You have your near-misses, and as Gene has explained, it really is a women’s health issue. So how can the Medicaid directors have a holistic view of the quality of care that’s being delivered by their programs to ensure that women are receiving the care when they need to receive it in the best way.
- ZEPHYRIN: Let’s talk a little bit about workforce. Are there any recommendations to address these disparities in a rural setting? What do you suggest can be done at the medical school level to ensure future physicians do not add to the crisis? Gene, do want to start with this question?
- DECLERCQ: Yeah, I don’t think the problem was with physicians. That’s wrong. There is a problem with physicians, but the extension needs to be people from the community, and that’s where midwives can play a role. Having a community role and a clinical role is a key part of all of this. The whole idea of saying we have to have a fourth trimester focus is part of the problem in a sense. What we really need to do is have a focus on women’s health. If you look at that figure that shows that higher rates of disparities for maternal mortality as opposed to infant mortality and you wonder what’s that about, it was highlighted in one of those ProPublica pieces, we care more about babies than we do about women. And that’s why we have care during the prenatal period and we focus so much on the prenatal period, and that’s why we drop it after women have had their babies, because they’ve sort of done their job, had their babies, and now we don’t have to worry about their health anymore. We need to find ways — so the key is not to have postpartum care, it’s to have continuous care that starts prior to pregnancy, but through pregnancy, and then we don’t lose them. I give you one example from the maternal mortality review committee. So I look a lot at the opioid cases and you have situations where women do remarkable work to try to get sober during their pregnancies. And they do. And it’s an amazing story to see what they’ve done during the course of their pregnancy to stay clean. And then they have their babies and the babies are still taken away by Department of Children and Families or whatever they are called in the given states, because the women are still in a risky situation and the priorities for that department is to protect the babies. I was at a regional meeting of review committees and I asked the question: What do you have for those women to support them afterwards? And it was very akin to when I’m in a class and I ask a tough question and no one wants to meet my eyes because all of the committee members are like this, because they didn’t have a follow-up program. These are the highest risk women we deal with, because they then plunge back into the difficulties they had before. And why don’t we have systems for them? Because they’ve done their job. They’ve had their babies. So it’s not about fourth trimester care. It’s about continual care for these women all the way through and valuing women’s health in an of itself. Now if the only way we can convince people to value women’s health as a given is to say, well, then they can have healthier babies, fine. Whatever works to make that argument. But this is about continual care. And that’s where you need people who work both in the community and in the facilities, or you have what Jennie’s talked about, which is people who work in the community that have strong, vibrant relationships with the people in the hospitals so there’s constant communication back and forth. Now, the payers can help with this, and that’s a piece of it. But it’s also the community level work that needs to be done to make those relationships between people in the communities and in the hospitals.
- ZEPHYRIN: Thank you. We have a question that links us around CPMs as providers and allowing them not to be enrolled in a MCO or a fee-for-service. Do you want to talk a little bit about that? Maybe define what CPM is for the audience?
JENNIE JOSEPH: Certified Professional Midwife, CPM, is typically a non-nurse midwife who works generally in out of hospital settings. Maybe a birth center or a home birth setting. But certainly is in the community that she’s serving, or he is serving. I think tying this back to the workforce development question, this is where we have to really be realistic and practical with our solutions. So we need a new workforce and that workforce needs to look differently to how it currently looks. That workforce also then can collaborate with existing systems while we wait for those existing systems to right themselves. I hold out hope for the system to right itself because the system is broken. And unless we address that, we’re not going to get anywhere. So let me go back to workforce development. A community level, community based provider that could be either in the paraprofessional side, meaning she’s non-medical, or she’s a supporting medical practitioners, and midwifery is a model that’s very easily used when we’re going to build community providers. So we may be talked about doulas, childbirth educators, lactation educators, community health workers. But they are already there. They are easily trained, cost-effective, but very effective in bringing about the support that is the missing component. So across all of these concerns that we’re discussing today, what’s lacking is support. These are the providers that can provide support. The midwives, on the other hand, especially Certified Professional Midwives, CPMs, are right now active in their communities, but are hobbled because either they are able to build Medicaid, which doesn’t pay anywhere near enough to support their practices, or that they aren’t eligible to provide Medicaid and the patients that need their care can’t afford their care. So in supporting and increasing capacity and sustainability of community-based organizations, community-led organizations, and particularly black women owned and led organizations and agencies, we can strengthen and grow a workforce. Because this workforce becomes the pipeline to diversify medical professions, midwifery, social work, you name it. If we look at this holistically and recognize that at every level that we’re talking about, what is causing harm and death is racism, classism, sexism. And if we start with community-based workforce who are able to on the ground address these issues in real time, and build and strengthen the system and help in the navigation of the current system, which I believe strongly needs to be fixed. We are then getting an action right away, rather than wringing our hands and talking, and talking, and talking, researching, researching, researching, researching, and finding out that women and babies in this United States are suffering every living day.
- ZEPHYRIN: This question is for Shanna. When you were talking about disparity between racial mortality rates as it pertains to increases in age, you mentioned the word “weathering”. Can you speak more about what this term means?
SHANNA COX: So this term goes back to some research that has been done in Chicago by a Dr. James Collins and others that have shown for a number of outcomes — as you look as women get older — so actually, what people don’t realize, the healthiest age for an African-American woman to give birth is actually at age 19. Because as African-American women get older, their risk of poor outcomes, whether it be pre-term birth, maternal mortality or other adverse outcomes, actually becomes larger. And the gaps between white and black women become larger over time. And so some of the things that might be contributing to that are exposure to implicit bias, structural racism, stress, neighborhoods that don’t have the same resources; whether that’s education, workforce, access to medical care. So really, it’s — again, as a lot of the panelists have been saying, this life course perspective, this life course trajectory, and what that looks like over time. Some of the other research has shown that when women migrate to this country from Africa or from West Indian countries, they actually have the same rate of good outcomes as white women, but within one generation of their children being here, you start to see those disparities where again, they end up having more adverse outcomes than white women. So there is something particular about race and experience of race in this country, that’s definitely driving some of the outcomes and the disparities that we’re seeing.
JENNIE JOSEPH: Can I say real quickly: It’s protective to have someone who understands that just naturally, inherently. To listen and hear you. Like that. Because if you think about it, as we’re providing care in our clinics, we’re providing midwifery level care, that’s all we’ve got. We don’t have any fancy technology and instruments and special equipment. So we’re listening more than we’re doing anything else, whether clinical or not. And in the listening, somehow the cervix stays shut tight and the baby stays in. And the belly grows and the children come out with big, fat thighs and they are breastfeeding. There is no other intervention other than the listening and the acknowledging and being heard and understood on a level that somehow gets into your physiology. That’s protective. And it actually doesn’t cost any money.
- ZEPHYRIN: What are some of the potential factors driving the higher prevalence of mental health conditions related to maternal mortality among what women, compared to black women? Does anyone want to speak to the mental health conditions?
SHANNA COX: I don’t think we can say what are driving mental health conditions overall, but I think globally, and again, going back to what Gene has presented, suicides are increasing exponentially in this country. Opioid overdoses and substance abuse overdoses are increasing exponentially in this country. So it’s just a manifestation. What your seeing in regards to pregnancy-associated overdoses and pregnancy-associated deaths are just a manifestation of what’s going on in the country and our communities globally.
- DECLERCQ: I would just add the designation of mental health problems and opioid problems [inaudible – mic turns off] The designation of mental health and substance issues is often mixed. And I can give you an example, again, that we deal with: If a woman walks out in the road after she’s had her baby, and is killed, we have to try to figure out, was that pregnancy related or not? Now, she just had her baby taken away; the case I gave you before. Was that a suicide? Was that an accident? Was she high? Aside from a coroner’s autopsy, we don’t know. And it may get classified in one sense or another. These things are interwoven, that’s why we keep talking about integrated solutions to problems that don’t arise from one thing. We would love it if we could just say, “If we did this one thing, we could solve the problem.” But the fact of the matter is, the problem didn’t arise from one thing, and it won’t be solved by one thing. So when people talk about the different policy initiatives that are out there and someone says, “Which one is the best?”, they are all necessary. We need to address this in multiple ways to deal with a problem that has multiple causes.
DR, ZEPHYRIN: So this relates to Medicaid expansion and the impact of Medicaid expansion on maternal mortality outcomes in states that expanded Medicaid.
JENNIE JOSEPH: I’ll just start, because in Florida, where I operate, we did not expand Medicaid. Before that though, we were already in dire straits. What we have is a dearth of providers — obstetric providers — who will actually take Medicaid. What we are dealing with currently is that Medicaid was handed over to managed care organizations and so there are many more managed care organizations now operating the pregnancy and maternity in that world, but they are also, according to where they are operating, finding it hard to bring on providers for that plan. We are the only ones in our county that take all the plans. People get a card in the mail, they sign up for Medicaid, they get a managed care card, and this is your organization that you use. Oh, well, you’re pregnant, but we don’t have a provider in your area. That’s it. End of story. Like, there’s no next step after that. So Medicaid and managed care, hand-in-hand, have created a barrier because the providers aren’t there to accept that plan. And the reason why is because the plans don’t pay any money. They don’t pay enough money to sustain a practice, and they also then continue our biases that are linked to the use of Medicaid. The women that have certain cards get treated a certain way. And that’s a problem as well.
DR, ZEPHYRIN: There is actually a recent study published in JAMA, which looked at Medicaid expansion, but they looked at low birth rate and preterm births, and they actually showed a shrinking of disparities and states that expanded Medicaid, compared to states that didn’t. And so — and then there is also the issue of actually providers accepting Medicaid and reimbursement rates as well. Can we speak to the role of increased research and data collection in addressing disparities and outcomes?
DR HOWELL: Yay! That’s what I think is really essential. I think that we need to do — I mean, I’m sure from the CDC perspective, we need to do a lot better job with measurement and trying to understand what’s going on. But we need to do more work around — I’m just going to address the workforce issues for a second, because implicit bias training, for example, is something that’s been getting a lot of press and people have been talking about it. And we know over and over again — I’ve done focus groups with moms we’ve had these severe maternal morbidly events, and I’ve done them with white moms, I’ve done them with Latina moms, I’ve done them with black and African-American moms. Universally, when do not feel listened to. Women don’t understand why they had their cesarean section. These issues are more acute and more pronounced for women of color and there’s no — at least from my reading of the literature and my own work — but I think overall we need to train our workforce more around how to communicate and listen. And so I wanted to just echo that as I think about research, I think — because there is no question to me that implicit bias training can be very helpful to us around workforce issues and thinking about when we’re doing search committees and looking to hire a candidate, that we make sure that we treat each candidate fairly and we need to recognize that about all of us. In the healthcare setting, I think it’s really important also, but I think we need to do more work around understanding how it actually changes outcomes for our patients. Because I would argue that we don’t just need implicit bias training, we need more work on how we communicate with patients, share decision making, all of it. The whole basket needs to be improved if we are going to start taking care of women and improve outcomes. And so I think that’s one area.
And other big area that I think we need to address is quality measures in maternal healthcare. So currently we don’t have very many and they don’t necessarily capture what women really care about when they want to go deliver a baby. And further, they don’t capture disparities very well. So other than cesarean rates, which are pretty uniformly higher among black women than white women in a number of different studies, and we can talk about the reasons and go down that pathway. Other than that, a lot of the things we measure are sort of overutilization measures. So things that — traditionally racial and ethnic minorities are often not getting what they need to get. There’s an evidence-based practice and they are not getting that. But when we focus on quality measures that are only looking at overutilization of something, then we’re not focusing on some of the crucial issues that are affecting this population. So until we start thinking about quality measures more broadly, having things that are more focused on women and what they want to know and what would be important for their decision making, and thinking about disparities as we try to develop these quality measures, I think that’s a really other important area of work that we need to do.
- ZEPHYRIN: Thank you. We have a question at the mic.
AUDIENCE MEMBER: Hi, my name is Jessica and I’m interning at Senator Gillibrand’s office. So I have a two-fold question. The first is: Study has shown that black women in New York City are going to the worst performing hospitals, whether it’s the lack of equipment, understaffing or systematic racism. I was wondering if you guys knew if there’s any data that exists showing similarities that all of these hospitals share? Then the second one is: In other countries, they treat maternal mortality as a public health catastrophe, where the U.S. treats it as a private loss. I was wondering why is that? And do you think that’s a problem?
- HOWELL: I will take the first question and then I’ll let my colleagues take the second one. The first question, that’s sort of the work that we’ve been working on in New York City, and you’re absolutely right, that’s exactly what we found. The question is: It’s more complicated — sure, it’s about resources, it’s about the extent to which low resourced hospitals — it is about resources, but it’s about more than resources. It’s not an easy solution to — we know that some hospitals — we have hospitals with incredibly high percent Medicaid. So we have hospitals that are 80 percent Medicaid in the city. Many of our hospitals are above that. So a big bulk of our hospitals are in that group, but still in that group we have people who perform well and folks who don’t perform quite as well on this metric. And so we need to dig deeper and know that resource is a big part of this, but it’s about culture. It’s about the way we treat patients. It’s about how we handle adverse events and medical errors. It’s about all of those additional things. It’s about how we collaborate with our other healthcare professionals. Is it a hierarchical environment? All of those things, I think, play a role on the teamwork that happens on labor and delivery, which is so crucial for the health of pregnant women.
- DECLERCQ: In discussing other countries, one of the things to keep in mind is they actually have functional social systems too. And so when we talk about preventability of deaths in the review committee and we have these sort of social — you know, someone who’s been out of thee system since she was 15 years old. And had difficulty after difficulty. And then we come to the question of, was this a preventable death? And one of the comments that gets made is, yes, if this was Sweden, right? Yes, if this was a country that had a functional social system that took these people in from the beginning and worked with them for the decade prior to the event that we’re now studying — namely, her death. And so that’s the dilemma. How much can we offset the fact that we don’t have a — we have a very privatized, fragmented system at the moment, which is understandable, but how much can the public health system offset that? How much can we do to try to rectify the other problems we have in society through this one piece of public health activity? And that’s not just a case in women’s health, that’s a more broadly challenging problem for us.
JENNIE JOSEPH: I will address that question, and thank you for that, because it’s really insightful. Looking at the fact that I was in England for ten years as a midwife and I worked in a busy London hospital, we had one maternal death during that ten year period. I’m talking about between 1979 and ’89, so that’s to give you the timeframe. The woman died of a hemorrhage that we could not stop, basically. But I remember, and I was a young midwife, but the entire hospital including even the cafeteria staff — everybody went around like zombies with their mouths hanging open. We were in shock. It was such a public event and the horrific side of it was that we were all just surprised, like, we hadn’t experienced that before. I didn’t experience it again until I came here. So I think we’re looking at other countries recognizing and enveloping mothers, women, babies. And as a matter of course, as a human right. So the situation I find myself here in the United States, is that because the system is how it is and the acceptance and acknowledgement of the system is how it is, is how we do business. And that we are looking at solutions outside of the system. We individualize. So we blame the women, for example. “Well, if you weren’t so heavy, if you ate better, if you lived in another place, if you…” This, that or the other thing, we can then keep looking at, well those are the problems, rather than the system. So as an organization, a hospital organization, we were all devastated that one of our patients died. I’m not suggesting that the American systems don’t think about that, or care about that, or that individually, we’re all of us wicked, horrible people. I’m suggesting that individually, right now, we’ll have to all agree and work from a perspective of, we need the system change to be able to address this problem, because the underlying reasons of why this is like it is, is because we are looking in the wrong places. We are looking at the woman herself. We are looking at the social determinants, which are important. But those won’t change, then it doesn’t matter what we do. So we’re on this sort of trajectory of keeping — sort of going around the main issues. The main issue is that we’re siloing the way we do the care. We’ve got horrendous gaps that we’re not prepared to look at as being needed to be filled. And we are not pulling together in a collaboration to work on all levels — and again, I’m going to stress, we must start at the community level if we are going to get anything done at all.
- ZEPHYRIN: So we have a few minutes left. I want to ask this question and then we’ll go to the folks in line. This links to — we know hospitals won’t do the right thing unless it’s aligned with their bottom line. Elizabeth Warren has proposed a pregnancy bundled payment model and there are many proposals in Congress right now. Would any of them make an impact?
- DECLERCQ: Same answer as before. Yes, all of them. I mean, they all have different components to it. So the Warren Bill is going to deal with hospital level; we need that. The Cory Booker Bill that talks about extending Medicaid out to a year; we need that. All of these different efforts are necessary. The question is: Can we redefine things? This is really — this is such an intensely partisan time. Or for those of you not from Boston, an intensely partisan time where we don’t feel like we can ever get anything done. And it strikes me that here’s a place where we can say, “This is more important than our differences.” Can we say for this one issue — can we really say, we are going to take these steps to try to deal with it. And I think that’s where the hope could lie. That we carve out smaller pieces where people can come together. This shouldn’t — what is partisan about a woman dying? There’s no reason for that to be driving the differences. And I’m not naïve, I know exactly what’s going on right now, but maybe we can say for this one issue, we’re going to take some steps that we know would be really necessary.
- ZEPHYRIN: Thanks. And at the mic?
AUDIENCE MEMBER: Good afternoon, thanks for a great conversation. I’m Germane Bond, Senior Director at the National Quality Forum. And I have sort of a two-part question. The first part is: What role do you think that men and expectant fathers play, or can play, in improving pregnancy outcomes. [Applause] And also — thank you. Also, how important do you think having a paid maternity and paternity leave program will help us improve outcomes? Thank you.
JENNIE JOSEPH: Can I answer that one? I’d love to go for that one. This is where we realize we’ve made some horrendous mistakes in how we’ve set this up. We know that the men are integral to this whole part and one of the ways we do that is on a community level, once again, we encourage the fathers into the room. I have couches in every exam room, because men do not like to sit on little silly stools for three hours waiting for a provider, right? And we know that we have to involve them from the beginning. So we look at our patient-centered care model from a perspective of mother, baby, family. So the dad is part of the dyad, the triad actually, and that all of the care is delivered to all of the members — mother, fetus, father. And then baby postnatally. So that’s absolutely the key. But the other piece, which I think is absolutely outrageous and certainly could be looked at as far as policy, maternal and parental leave pre and postpartum. That has to be there in those first few weeks. And when the father is not able to access that new family unit, that is a lifelong problem. So we are pushing for dads to be involved. Our dads behave as the doula in the delivery room. We train them to take the role of the doula and support the mother and to know what to do in those first few days postpartum. It’s made a big difference to our outcomes.
- ZEPHYRIN: We are out of time. So quickly, just one thing that you think that policymakers should do or should know to impact this effort. Shanna?
SHANNA COX: So I think policymakers could again, think about quality of care. And ensuring that quality of care is universal. I think as others have spoken in regards to making sure that all hospitals are participating in quality care initiatives, so that you’re not leaving some behind. That all persons have access to postpartum care, prenatal care. So that some populations aren’t left behind. So whatever issues move forward in regards to policy implementation, having that eye in regards to making sure that everyone has access to whatever that’s implemented, and so the improvements are seen by some populations and so you don’t see the continuation of some populations being left behind.
- ZEPHYRIN: Gene?
- DECLERCQ: Aside from the other initiatives that we’ve talked about, fund and train and support community health workers/doulas to start the process of integrating — and these are women from the community who need to be trained to relate to those women that they’re working with. But support them. We have a few states that provide Medicaid funding for doulas, but the numbers are so small that most women don’t — you can’t survive doing that. And so set up systems that follow women from as early as possible through postpartum to give them the support that they need. And that doesn’t cost a lot of money relative to some of the other initiatives we’re talking about, and that can be the place we integrate the community into this process.
- ZEPHYRIN: Thank you. Liz?
- HOWELL: So I’m realizing what I’m going to say is not as directly linked to — I think we have to change the culture in medicine. We have a big culture right now on quality and safety and there are a lot of penalties around that. There are a lot of initiatives, and it’s something that Laurie and I were just chatting about earlier, is that we need to be integrating the word “equity” as part of that. Because you can’t have quality and safety without equity. And so if we could sort of change that framework and start thinking about that and in terms of — I just wanted to echo how important it is, also — two other quick things: One is this quality measures, I think, is a really important area that we need to develop for maternal healthcare. I think with a lens on disparities, but getting more measures that really matter, particularly for our high-risk women. What is the care that they need? How can plans evaluate the care their patients are getting? I think that’s a really important area that we need to focus in on.
- ZEPHYRIN: Jennie?
JENNIE JOSEPH: Yes, access. Access and funding for community-based organizations. Recognition of the need for training, building a pipeline, access for collaborations. Let people in the door who can help you on higher levels and support them. And then access for all women to women’s healthcare, period.
- ZEPHYRIN: Thank you. Thank you to our esteemed panelists for sharing their expertise.
We are at a moment right now. We’ve heard of some doable and actionable solutions. So please continue to be engaged with us.
SARAH DASH: Thank you so much. Thank you all, to our panelists. And I just want to ask everyone to do one thing. You guys are all good students, you’ve been really watching and paying close attention. I want you to look out the window. Because we don’t get to be in this room very often. This is a fantastic view. That is power and we all have power to take something we learned and take the next step in solving this crisis. And so I want to thank everyone for coming. Before you go, please fill out a blue evaluation form, we really, really appreciate it. To those of you who stuck with us and didn’t have seats, we appreciate it. If you were not able to access the folder, you can go online at Allhealthpolicy.org and everything will be online and you can email our staff if you need any follow-up. Thank you again to Laurie, to all of our panelists. Thanks to the Commonwealth Fund and join me again in thanking our panel.