Editor’s Note: Alison Stuebe, MD, MSc, is a professor and Division Director for Maternal-Fetal Medicine in the Department of Obstetrics and Gynecology at the University of North Carolina (UNC) at Chapel Hill and the co-director of the Collaborative for Maternal and Infant Health. Kristin Tully, PhD, is a research assistant professor in the Department of Obstetrics and Gynecology at UNC Chapel Hill and a member of the Collaborative for Maternal and Infant Health. We spoke with them about their work in maternal and infant care, their Agency for Healthcare Research and Quality (AHRQ) Patient Safety Learning Lab project, and what they are discovering about equitable care and its impact on patient safety.
Kendall Hall: Let’s start off with some introductions. If you could, please each tell us about yourself and describe your current role. Alison, do you want to start?
Alison Stuebe: Sure. I’m Alison Stuebe, and I’m the Division Director for Maternal-Fetal Medicine at UNC Chapel Hill. I'm also the co-director of the Collaborative for Maternal and Infant Health, which is a multidisciplinary collaborative of folks in pediatrics, obstetrics, social work, and public health that works to improve care for moms and babies. I think the centerpiece of the Collaborative’s work is really understanding that you can't take care of one without the other, so there's been a lot of work over the years to think about that dyadic relationship and how we can address the needs and elevate the strengths of both at the same time.
Kristin Tully: Hi, I'm Dr. Kristin Tully. I'm a research assistant professor in the School of Medicine at UNC and part of the Collaborative for Maternal Infant Health, as Dr. Stuebe just described. I'm an anthropologist by training, and to me that means really thinking about human needs and applying that to maternal health within the population that we serve at UNC Medical Center, which is the site of this Patient Safety Learning Lab.
KH: Tell us a bit about that work as an AHRQ Patient Safety Learning Lab and how your interest in this area developed.
AS: So, I practice full-scope maternal-fetal medicine, and part of my job is providing postpartum care and discharge teaching for the high-risk moms and babies. Previously we've done work funded by HRSA [the Health Resources and Services Administration] looking at the needs of moms of medically fragile infants who are in the NICU [neonatal intensive care unit]. Through that observational work we found a lot of unmet needs in that population. There are so many things we have to explain to somebody about her health, about her baby's health, about what to watch for, and oh, by the way, this has to happen in 36 hours, and your nurse has five other patients. I think we recognized that there were a lot of shortcomings in the current model.
KT: [AHRQ’s Patient Safety] Learning Lab is an ideal mechanism for this space because it gives us an opportunity to approach this with our strong programs of work and our good ideas. But it is also about the community that we're seeking to serve, and so, we recognize that to support them, we do it with them, with our interdisciplinary colleagues and with extensive stakeholder engagement with birthing parents, their companions, and the healthcare team. I think it is a really important point that we have meaningful collaboration through intentional effort. A healthcare team member participant once shared how important the distinction is between being heard and being understood, and we'll talk about that more, but when we think about maternal inequity and disparities and the processes which drive the outcomes, there are layers of care that are important. And if patients and care teams are literally not speaking the same language, they are not being heard or understood. So that has been our first priority, to have the mindset and openness and desire to hear each other, and then to translate that into how we ask questions and how we reengineer care.
KH: Wonderful, thank you. So, let's talk about care and how you define safe maternal care. What does that look like?
AS: I think that one of the things that's been really fascinating is that in the qualitative interviews for this project, we've asked patients, “What does safety mean to you?” I think before I got into this particular space, I assumed safety meant things like the right medicine, the right time, check bracelets, do a timeout. All of those things are necessary, but they're not actually sufficient for the patient to feel safe. I think that for the parent, the mother, to be safe, she needs right medicine, right time, right dose, no nosocomial infections, etc., all those facets of good care. But then she also needs to feel like her questions are answered, that she feels safe asking them, that she goes home understanding what's an emergency and what’s normal and who to ask if she's not sure, and that she feels like she’d want to come back to the hospital because she got a type of care that made her feel well. If she was not treated well during her postpartum stay, she might go home and have a headache and have high blood pressure and say, “Well I’m not going back to that hospital.” I do think that one of the ways that we missed severe morbidity and mortality in the postpartum period is when the patient doesn't know she needs to come in and doesn’t feel like coming in is going to be helpful, so she then sits at home with something bad. In thinking about safety, that becomes really important.
Then for the safety of the baby, the mother and her partner need to know what’s an emergency for the baby. Right as you’re preparing to the leave the hospital, there is so much new information to be aware of, particularly if you’ve just had major abdominal surgery in addition to having a new human to take care of. Some of the work that inspired this project initially was around breastfeeding and making sure that breastfeeding was well-established and that moms had appropriate resources so that if the baby wasn't getting enough breast milk that she knew where to turn and what to do about it. Then, make sure that the partner feels like they understand what's going on, so they know how to be helpful. So, you really are educating, and it's a lot to do often in a very short period of time. And again, the structure of the care, and the too many patients, and 50 people coming in and out of the room, and all those kinds of things make it really hard for people to feel like they're being treated like humans, as opposed to like another person who needs a box checked.
KH: For our audience, I think it would be helpful to understand what some of those maternal outcomes are. Could you please highlight a few of the more common outcomes?
AS: New moms can develop preeclampsia for the first time after delivery, or they can have preeclampsia that worsens after delivery. Blood pressures are highest three to six days postpartum, which is after discharge, and so folks can go home and then stroke or seize. Delayed infection is also a key risk for moms. And then we also know that postpartum depression, postpartum psychosis, and substance use disorder are major risk factors for mortality. So, folks who were getting weekly appointments who are on Suboxone in a substance use disorder program go home with a new baby, don't sleep, don't have that follow-up, and may lose insurance. Deaths from overdoses are one of the major causes of mortality in the first year postpartum. Kristin and I have said in our work on the fourth trimester, that if the baby is the candy and the mama is the wrapper, once the candy is out of the wrapper, the wrapper tends to get tossed. We're working hard to change that and recognize that we need to take good care of the mama even when she's not carrying a baby anymore.
KH: And so for your Learning Lab work, it’s really focused around that first week after going home? Is that the most critical period?
AS: That’s the focus of the Learning Lab, but we’re interested in the whole life, right? Certainly, at least the fourth trimester, which we loosely define as the three months postpartum. But Kristin can speak more about the safety because she’s led that analysis and it's really powerful.
KT: Outcomes also include agency; it includes institutional trust and how much you see healthcare as a resource. Safe care also includes respectful care, having an appropriate pace of conversation, educating throughout the postnatal stay, not an overwhelming checklist style right at discharge, and making sure the parents don’t feel alone. I think the most exciting thing for me in our work has been our inpatient filming of the postnatal unit stay where we, in collaboration with families and their clinicians and with full transparency, set up cameras and microphones in their rooms. We filmed 15 families, including Spanish-speaking families, and observed hundreds of hours of their journeys. We see the timing of when things happen, we see the pace, we see how questions are articulated from patients. So, if someone says, “I'm not sure if my baby’s feeding enough or not,” we can recognize that as an opportunity for education. We can see if they were woken up at 4:45 a.m. and asked about circumcision, IUDs [intrauterine devices], and to be provided instructions for their follow-up care, and then we see that they can't fall back asleep. We see that when they're communicating in that context, they're startled. That is not patient-centered care. That is physician-centered care, but it’s not the fault of the physician, it's a part of how the system is set up. This isn't about identifying what an individual physician could have done better. This is about understanding how care is structured. Sometimes it feels like a transaction, and that doesn't make sense when this is a life event. Childbirth is not only a medical encounter. We have to recognize and treat the newborn and parents as whole people. Otherwise, they are not going to call when they're concerned, they're not going to call until it’s a lot more severe than it has to be. There's a lot of unnecessary suffering with distress and delay of care that could be avoided if healthcare systems looked inward and built their worthiness of attendance.
KH: So, that's really interesting, and when thinking about redesigning care, where do you even start?
AS: We call our team pan-disciplinary, which I don't think is a real term, but we like to use it because we have so many different types of expertise on our team. We have human-centered design folks from the design school at NC State [North Carolina State University], and they've enlisted a curriculum development specialist at NC State to think about the appropriate curriculum for patients to understand a particular topic. We're using hypertension as a model for how to build that. They’re helping us think through our learning objectives and then what we think folks need to learn. Is it you knowing the number 160/110 is what we get worried about? Or is it how to take blood pressure and the circumstances to take it in? Things like sitting the right way and before you’ve had any coffee. And then how do we practice that? We're going to do workshops with nurses and providers and then with patients to think about how we’re going to explain this important stuff—what are the elements and then how are those presented? Are there things that would work as video or a handout? And are there things that really need to be a conversation? In the current model, too much of discharge teaching is “I came in and I said the words and the patient's eyes were open, and therefore I have taught them.”
I think the other thing that we really realized is that we need to do a better job of explaining what we're doing. One of the really heartbreaking video sequences was a Spanish-speaking family where the nurse came in and said, “I'm here to take your baby for the car seat test.” She said this in English, and she took the baby. The car seat test takes like 90 minutes. The parents proceeded to talk with each other in Spanish: “What's wrong with the baby? Did they say it was something about her breathing? I think it’s her breathing; did you notice she was breathing funny? I hope she's okay. What's taking so long?” Talk about unnecessary suffering, right? We were doing the car seat test that is for “safety,” but the patient thinks there's something terribly wrong with her child. That was a failure to not have an interpreter, have a Spanish-speaking clinician, or have a handout in Spanish. A lot of mothers said, “Safety is knowing where my baby is, and when my baby's not in my room, because I'm worried that someone took my baby.”
KH: I would assume that a lot of this education probably shouldn't wait until the day of discharge. You should start giving them this information and repeating it at each prenatal visit. Are there opportunities to do that?
KT: Yes, definitely. Some people even refer to postpartum as aftercare, and it's too little too late. The hospital is not the place for new things, it’s for tailoring and for going in-depth and for processing and for hopefully celebrating. One of the things that has been so valuable that I learned from Dr. Joia Crear-Perry, who's a consultant on this project, and her team at the National Birth Equity Collaborative, is a difference between frameworks and indicators. I think that the most powerful tool that we have is the way that we see things. We're looking at the system with fresh eyes, and we recognize that what has been built, can be rebuilt, and we can do better in the way that we take care of people to better reflect our values. We can conceptualize it more fully and better define what safety is and how we measure it. I'd suggest that a paper survey sent to patients weeks later without framing the utility of engaging or otherwise providing motivation for completion is not an optimized approach. People want meaningful platforms and to be proactively informed about how they will be protected. You need to know what's confidential and how information might be used, including if it can be used against you, because people worry about their babies being taken away. Our culture of health, I think, is the most powerful intervention that we have because everything flows from that.
KH: It sounds like a lot of what we've talked about up to this point is applicable to all patients. Do you see disparities in how different patient populations are treated?
AS: I think one of the places where it's really stark is the challenges around non-English-speaking patients. We've identified some pretty grotesque systems issues. We have a bilingual research assistant who’s been recruiting patients for our longitudinal surveys. On a number of occasions she has come in to meet the patient, and she asks about feeding, and the patient will tell her they can't breastfeed because they haven't had anything to eat in the last 24 hours and don't know how to get food. There's a phone number you're supposed to call to order food, and we discovered that if you call after 9 p.m. there's a lovely voicemail in English saying please hold, and that is repeated in Spanish. Then in English it says, “If it’s after 9 o'clock we’re closed. Hang up the phone and tell your nurse.” But those instructions were not provided in Spanish. So, if you have your baby at 9 p.m. and you come upstairs, you could sit there holding the phone for . . . ever. So, I called, and they fixed that, but those are the kinds of things built into the system. Twenty percent of our patients are Latina, and probably 10 to 15% of our patients are Spanish-speaking, and so it's not like it's a rare thing that someone needs to be able to have an interpreter. And there's a lot of talking loudly in English, as though that somehow makes it understandable. But that is a downstream effect of not having enough interpreters. One of our team members did an analysis of about 50 Spanish-speaking patients and looked at how often interpreters were used during inpatient encounters and at postpartum discharge and learned that the wait time was 5 to 75 minutes for an interpreter. If you're not sure if it’s going to be 5 minutes or 75 minutes and you need to ask the patient something, it’s not surprising you might go in and speak loudly in English. Do we really want to be a world where it's okay not to feed people who just had babies or are hospitalized for any reason, for that matter, because they don’t speak English? So, we made a lot of noise, and this was not just something unique to our group. Many of our PSLL [Patient Safety Learning Lab] team members are now part of a UNC Health System-wide effort to look at the care of Spanish-speaking patients, to address the gaps, including ensuring there are enough interpreters. But that's an example of where the system is clearly not designed to provide equitable care.
KH: It reminds me of some of the work in patient safety around the use of Failure Mode and Effects Analysis to think about all the different things that possibly could go wrong with the care and the resultant consequences, and I'm wondering if there's an opportunity to integrate some of those safety methods? For example, systematically examining the process of care from the patient’s entry point into the hospital and then through all of the steps of the process and assessing where things can go awry.
KT: We have been doing that, including taking pictures, making detailed notes on conversations we have. This has grown out of our lab and is now something used across the health system for action. A mom recently shared with me that “poor postpartum care feels like a rip current, pulling you out and waves repeatedly crashing on you, and that's how people drown.” So, we not only need, for example, postpartum doulas as the life vests, but we need to give people information in advance that can serve as their boats and paddles. That's what forming realistic expectations is. That's what having agency is and feeling safe to communicate. We need to provide proactive support and recognize that safe, respectful care means structuring it to be accommodating.
AS: I have a great example of this from the NICU. We have a 58-bed neonatal intensive care unit, and all of the visitors are moms or dads who recently had a baby. In our focus groups, a mom said, “You know in the restrooms for patients there are no peri-pads.” Every single one of those moms just had a baby. Every single one of those moms will have lochia for a couple of weeks. In the restrooms, they had tampons but no peri-pads, and you can’t use a tampon in the first weeks postpartum. Another example is from work that Kristin led, around looking at the design of the bassinets that are in the postnatal room. The old models are great if you're running a nursery, but not if you had a C-section [cesarean section] and you're trying to hoist your baby out and back while rooming in. I think those are both good examples of the need to reengineer the care to be centered around patients.
KH: I think that’s great to think about the design of the environment. I've done a lot of work in healthcare design, and the NICU is one of the settings that traditionally has had a lot of research on how to design to protect the babies. But that work is not really focused on the moms.
KT: Infant health is maternal health and vice versa. They are, as Alison said at the start, a dyad, a couplet, part of a family unit. You know, there's lots of ways to phrase this, but they are interrelated. The things that they need and the things that they do only make sense in relation to each other. But yet, we have so much attention on babies postpartum. Our purpose is to transform. We don't have a list of interventions for people to do more things. We are here to change the way it's done in the community with those who are doing it, with the nurses and with the midwives, physicians, and whole team. It’s not more things; it's changing the existing things.
KH: Great. I think this is a good transition point. Now that you are starting to have these data, what are you going to do with it? Is it a case where we really need to kind of just turn the ship quickly and try to reinvent care? Or are there steps that we can take now and things that are actionable now for the short term that we can do to improve care?
AS: That’s the $6 million question, right? You know, I think that what’s been very cool about working with the designers is that they are about user experience and journey. You know, if you're designing a ride in Disney World, you don't create the middle of it without taking into account the whole experience. I'm not suggesting that postpartum care and Disney World are the same, although there's often a lot of waiting around in both cases. Part of what we're hoping to do with this hypertension curriculum idea is to build the model for what it looks like to really teach people, have them absorb information, and then be able to act on it. Hypertension education is a phase one to understand what that looks like. We've been chatting with folks about using Epic MyChart Bedside to deliver instructional materials to the patient. The patient can also look at their vital signs as a tool. We're looking at using it for Spanish-language information that could be pre-translated so we don't need an interpreter. So, some of those are smaller fixes. I do think that the bigger piece is really just getting folks to appreciate that this is important and that it's important to take care of women once the baby is out and really thinking about what does it mean to provide good care and then how to set up the system?
KH: We have talked about language and the critical role that plays for your patients, but are there other social factors that are impacting what you are seeing?
AS: I think one of the key pieces is how critical it is to have a support person, but not everybody has one, or they may have a partner who's taking care of the older kids, and that can impact whether the baby can be in the room with the mother depending on the medical care she’s receiving and how able she is to hold the baby. And then if the mom needs to be readmitted, the baby can’t be there without another adult because the baby is not admitted. The mom may end up making a decision about leaving against medical advice because she couldn’t be with her baby because the system didn’t have a way to accommodate the baby being there. So, I think there are these instances where the system presumes that there is some other adult who has no other obligations than to come and be there, and there aren't that many adults who can just come to the hospital for 72 hours. That assumption of a partner who is not otherwise occupied is an important, heteronormative, married, well-to-do family assumption that's built into the care.
We’ve looked at data that shows our Black patients have higher pain scores after C-section and get less pain medicine and get fewer pain assessments than our White patients. And so that’s an area that we’re trying to figure out how to address. We thought implementing a standard set of postpartum pain orders would help, but it hasn’t changed at all.
KT: People worry rightfully that they may be perceived as drug-seeking. Here, framing can make such a difference, and giving someone a piece of paper or asking them about their pain on a 10-point scale is not enough. You have to say like, “Giving birth can be very painful and uncomfortable. We have a lot of coping strategies including medication and also hot pads and baths and ice packs, etc. How are you feeling? Where is your pain?” And normalizing that you probably have pain somewhere, if not physically then perhaps emotionally. We have to stop pretending that a 7 on a 1–10 scale is meaningful to a patient. And they have to worry about if they're going to be seen as requesting too much if where they really feel is actually an 8. We have all this work around social determinants of health. This is all part of the same story. It is treating people as humans and then engaging with them in a way that they comprehend. That is such a better way to serve them.
KH: That makes sense. You're getting to the root of the issue. Like with that example and pain control or the language piece, it's really fixing that core issue around that communication and respect to the patient and their circumstances.
KT: As much as we can stop gatekeeping information and share coping strategies and be proactive, that's treating people appropriately.
KH: We are nearing the end of our hour and I want to be mindful of time. Was there anything else you would like to cover or that that you feel like we need to emphasize?
AS: I think I would just want to express my gratitude to AHRQ for funding this kind of work. I have a lot of other things I do with my time, and this project is my happy place. The opportunity to make space for really thoughtfully delving into these issues has been really, really valuable.