Diverse Perspectives to Support a Human Rights Approach to Reduce Indiana’s Maternal Mortality Rate

Theme 1: Lack of continuous, quality health care coverage

Across sectors, participants articulated a belief that continuous and robust health care coverage for new mothers would yield benefits in terms of health, financial well-being, and/or return on investment. Many participants discussed the impact of losing health care coverage, especially Medicaid coverage, on new mothers. In particular, the loss of Medicaid at 60 days post-partum had serious consequences for women’s health, and, in turn, their children’s well-being. One community member, describing her experience seeking postpartum care, drew connections between health care coverage to the financial well-being of her household, her own health, and her ability to care for her child:

So, after having my son, I developed mastitis really bad. But you know, your insurance cuts off at a certain time...even now I'm still receiving bills from me continuing to go see certain specialists that I had to see, you know, because it's something I had to have. It was awful. But my insurance didn't cover it, you know? I had no other option but to continue to see doctors and rack up bills. So, if I could continue to have like, the proper health care, so I can take care of myself the way that I need to take care of myself, so you know, that I can take care of my son now would have been like, awesome.

This community member shared that the loss of health care coverage created financial strain and damaged her credit score. At the same time, by suggesting that better health coverage would have allowed her “to take care of myself the way I need to,” this community member also indirectly linked coverage with care-seeking behaviors. Other participants made even more explicit links between coverage and women seeking care. For example, one physician/researcher said, “They lose access to their health care, and then they don't know what to do or where to go,” while a special interest group participant stated, “everyone pretty much knows that if you don't have health insurance, you're not going to go to the doctor.”

Individuals felt this was problematic because postpartum health care needs can surface months after delivery. A physician/researcher participant, commenting on the loss of coverage, noted, “…that is the worst thing for women because a lot of pregnancy-related deaths happen outside of that window.” Similarly, one of the special interest participants pointed out that “postpartum depression doesn't always hit right after you have the baby...” in discussing the need for extended coverage. Other participants noted that more stable coverage might also lead to improved health prior to conception as well.

With such broad consensus that expanded coverage would promote maternal health, why wasn’t there political will to provide continuous coverage? The two legislators provided insight here, saying that the state tended to prioritize economic development and:

…we don't put much effort into public health. And so, I think that is an area where we need to improve. A lot of other highly developed countries [have] national health care. And we have the Affordable Care Act, but it could be a lot better…we're gonna have to follow that up with where we put our money. The budget always shows our priorities…we have such a social safety net with a lot of holes.

Spending priorities also surfaced in the other legislator’s discussion of the state’s decision not to fund expanded coverage. She stated, “it would be dollars and cents well spent” and went on to say, “I think it’s like 52% of all of our births in the state of Indiana, are Medicaid. And so, we're, we're already paying a bill, so I think that's where a lot of people don't like to talk about is what it's costing us.”

Even as legislators seemed very focused on discussing costs and benefits, other participants pushed back against this kind of thinking. “What's the price tag you put on the death of a young woman?” one physician asked. Despite expressed frustration with an “actuarial price tag,” this same physician and other participants were able to name a variety of significant costs associated with not providing more comprehensive health care coverage, including the long-term consequences for child development after losing a mother.

Theme 2: Racism and implicit bias

Participants across domains were quick to articulate structural racism and interpersonal biases as barriers to quality care. One of the community members took aim squarely at the role of bias, extending it beyond race and gender, in effect laying out an intersectional theory of “four checks” in health care settings:

My personal belief is that there are three factors that will get you less preferential treatment - if you are a woman, if you are poor, and if you are Black. Four actually - if you're overweight, that counts too. If you have any of those four checks, you're not going to get the same kind of treatment as if you don't, and [my sister] had all four checks. And so, she comes in talking about how she's in pain and her back hurts and her stomach hurts…and they told her that they thought she was exaggerating and sent her home. She went into the hospital like three times. And then she lost her child.

This community member described a trauma compounded by bias, lack of understanding, resources, and support. In her view, anyone with one of the four “checks” will be treated poorly or disregarded, and she drew in an intersectional overlap of factors.

While not all participants saw as many factors, there was broad consensus that race and gender were key factors in health care access, in how women were treated, and/or in how they felt about interacting with the health care system. In one government/policy maker’s words, “…we need to be sure that all pregnant women have access, regardless of their race or not. I think there are racial disparities here.” One of the medical professionals, speaking about her own pregnancy, said she “just felt more vulnerable as a Black woman in the health care system.” She also described her wedding ring as part of a “protective shell,” suggesting potential fifth “check” against unmarried women.

Concerns about bias motivated women to make a variety of efforts to navigate around it. One community member sought out a Black doctor for her care, hoping that this would result in a change in the kinds of information she was given. She ultimately ended up disappointed: “Now if it was to happen again. I would not use a Black doctor. I didn't gain anything from it.” This same community member talked about how other women she knew made similar calculations about navigating a system they perceived as having racist providers, setting up a dynamic where women were accepting less resources to avoid what they perceived as biased providers:

I have friends that are White that prefer not to have their babies in [a wealthy suburban town] because they have mixed babies, and they say that you know, that they're racist. That's totally, you know, I haven't experienced it. All I know is I don't want to be at [a downtown hospital] because you just aren’t going to get people and the resources that, you know, I need.

Some participants outright disagreed with the idea of the existence of four or five “checks.” One member of the media said, “I don't think that I think it's worse if you're poor. I think it's worse if you're a woman of color.” Similarly, the physician who spoke about her own pregnancy experiences shared her belief that “socio-economic factors don't protect you from these horrible outcomes.” She further stated:

We can't say that like going to prenatal visits is what's going to protect you or, you know, being more health literate - granted that everyone should have health literacy - but we see Black women dying that had college degrees and advocated for themselves.

Like the idea of navigating to avoid bias, this physician seems to search for protective factors that would reduce bias, like attending prenatal appointments or greater health care literacy. Still, both “solutions” put the onus on women to avoid bias rather than reducing or eliminating it.

Regarding solutions, this same physician/researcher worried that applying the label “racism” would make addressing the challenge of bias more difficult: “…it's so hard, because I think that as soon as you hear the word racism, people get really defensive. If we call it ‘-ism,’ it kind of disassociated from anything we can do and have power over.” In a similar vein, one of the special interest group members felt that “bias” was too abstract or big to address concretely. “…we talk a lot about implicit bias, but we seem to talk about it as a sound bite at a very broad level, and we say there's implicit bias that I don't hear a lot of drilling down to specifics. What exactly is happening there?”

Participants did crave solutions that didn’t put the onus on women. One physician wanted someone to “come up with some implicit bias and medical racism training that we can start and measure” that is “interactive and gets people really connecting it to like their everyday life.” While ideas differed about how best to address them and how many “isms” to include, the role of racism and bias in health care clearly constituted a barrier most participants quickly identified.

Theme 3: Trauma and lack of mental health services

Community members spoke about their own trauma and the trauma of other women they knew. Alarmingly, these traumas appeared to exist in a space with little support, communication, or empowerment. In one community member’s words:

So, yeah, they put me under, and I didn’t realize it. And then I wake up and it's the next day, and I wasn't allowed to see my son for 24 hours. And he was in the NICU, so we weren’t even in the same room. Again, I wasn't allowed to see him so I didn't meet my own child for a day. And I went through a long period of depression, and just very much confusion because I didn't have, like, some type of closure or something, like oh there's my baby. But I was pregnant and then I wasn't, and for a while, it felt like I still was, and I had to go through, “Is this my child? I feel like I'm still pregnant.” It was it was a really tough, really tough time. Yeah, really hard.

In this community member’s history, her mother had lost infants, and her sister had recently experienced infant mortality. Her family history of these experiences, combined with her own experience of an emergency c-section, left her struggling with sense-making and dealing with long-term depression. She was adamant that this would be her only child because she would not go through this type of experience again and felt very isolated.

Feelings of isolation and inability to make sense of what had happened were also expressed by a media participant, who noted the failure of health systems to provide mental health supports to women in the wake of trauma:

[My sister] has a lot of scars, and a lot of, you know…physical scars and emotional scars. And, but the what the reaction was really kind of like, “Oh, that never happens to anybody you were the absolute only person that this has ever happened to…you’re a unicorn, you’re a freak” …. And, and for her the problem with that was that there was a real sort of silencing of her experience as a result, it was…there wasn't anybody. They didn't put her in touch with anybody to talk to. There wasn't anything that she could do about it.

When discussing the lack of systems for women to have all their health needs addressed, in addition to case management, several participants noted the concept of “self-medication” through substance use. One physician/researcher participant indicated frustration when making a behavioral health referral, noting: “the problem then becomes finding a provider." A community member expressed her concerns around mental health and substance abuse, which she then correlated to needing an integrated system to also address support systems:

…health, mental health, and substance abuse is connected. You know, I think a lot of services are like one tract. So like, if you think about, like, a collective approach, like somebody that can help with mental health and drug use at the same time, like it could be a one stop shop, it could address like, homelessness and parenting and like, just working in more of a collective way, because I wanted my [friend] to go to rehab, but then she got to rehab and she's still homeless, she ends up on the street falling back into bad bad behaviors. We need to look at the whole solution and come up with problems that are attacking it from all angles.

Here trauma, mental health, and substance abuse are also linked to instrumental support, a theme discussed below. A physician/researcher also linked these back to health care coverage, suggesting that failure to address mental health needs arising from trauma constituted abandonment: “We need a much better [and] can do a much better job of not just sort of abandoning women in this country, based on insurance or what have you after the baby is born.” In other words, trauma and mental health connected with other barriers.

Theme 4: Lack of instrumental and emotional support systems

Participants described the need for both instrumental and emotional support. This theme intersected with both access to health care and the bias theme, as the lack of instrumental and/or emotional support either promoted or constrained access to quality care within the system. More specifically, lack of support systems contributed to situations wherein community members did not understand their diagnoses when hospitalized and/or when receiving services for perinatal care. For example, one community member stated:

…if a woman doesn't truly feel comfortable with her healthcare provider, or the nurses who handle her, she's less likely to be honest, she's less likely to answer questions or ask questions. I had a major panic attack because I didn't have any support system, and the next thing you know I’m no longer pregnant [following c-section], and I'm back in my room.

All three community members discussed not understanding diagnoses while pregnant, and two discussed still not understanding the diagnosis and cause for hospitalization related to postpartum incidents.

Lack of appropriate support also discouraged healthy behaviors. One of the community members indicated frustration at not feeling supported when she was trying to self-advocate and linked the themes of support and racism. She had taken breastfeeding classes, educated herself on the importance of breastfeeding, and did not want her infant to receive formula in the hospital. She was discouraged because she expected the hospital and healthcare providers to support her desire to breastfeed her infant yet, she noted, “… my breastfeeding journey was never supported.” She wondered if the hospital did not support her because she was African American, and professionals assumed “…[my] community doesn’t have that dedication.” She eventually received support from a community-based home visiting nurse program, but her experience speaks to the role of bias and timing in the provision of needed support.

Community members also noted that the need for support goes beyond the hospital and includes supports like good jobs, transportation, and child care. “These are all necessary things that people act like it's a luxury. It is a luxury. But it shouldn’t be and it’s really not fair,” one community member noted. She went on to explain:

At this moment don't have a car, I don't have a job, those are two major things. So, if I have an emergency. I either have to call an ambulance to take on that $2,000 cost, or I have to wait for somebody to come take me to the hospital. That's not a great plan either way. I've had to cancel multiple appointments because I just couldn't get there. And on one occasion I actually did make it to my son's appointment, I had to beg someone for a ride.

One of the physician/researchers concurred that a lack of supports plays an important role in deterring healthy choices, especially in nutrition and physical activity; “Those things are hard choices to make…when you’ve got a baby who’s crying…or you may need to go back to work.”

A physician/researcher in his/her acknowledgement of the need for these types of supports, added that different supports might be needed in different contexts:

I think that really unpacking what are the major contributing factors to women in different areas of [State], because it may be all about social determinants and racism and poverty and things like that, in [an urban setting], my hypothesis would be that out in one of the counties outside of [another urban setting], it may be the fact that it's a two-hour drive to get to a hospital, or even a doctor.

Differentiation of supports to suit contexts must also include culturally responsive approaches, one of the legislators noted. Participants across all sectors also spoke about doulas as a potential source of emotional and instrumental support. One of the community members shared that she is seeking, “certification to become a doula so that I can help other women like me” and one of the policymakers mentioned her work at the state level to fund doulas for women who need additional support during the prenatal and postpartum period.

Theme 5: Insufficient knowledge and ability to self-advocate

The power dynamics between women and their health care providers, as well as between women and government, surfaced repeatedly. Community members expressed a strong need for more knowledge for women to “get out of their comfort zone and just be empowered to speak up for themselves and advocate for themselves.” Similarly, a physician/researcher wanted patients “to feel empowered enough to bring things up that they're concerned about, especially things that could potentially be life threatening” while a media professional wondered how to “empower patients to be able to have their voices heard” and suggested coaching patients as one potential strategy.

The community members offered clear examples of feeling disempowered, especially through lack of knowledge. One community member shared her experience of loss, expressing both disbelief and a fear that medical professionals had done something wrong:

The doctors was looking at me and the nurses was looking at me like somebody slapped them...like they had never seen anything like this. And so, I kept asking, you know what caused this, nobody could tell me to this day. I still don't know what caused this. And so, then they just they kept me overnight and they did some procedure. I still have no idea what the procedure is. So, I know in that experience, like, I asked them a question. They would explain a little bit, but I didn't get it but I didn't push further to say, “can you explain it again? Right, can you break it down?” Because, like I said still to this day, I don't know what caused that. They didn't explain to me what caused it.

Despite the urging of family to consider a legal remedy to uncover whether something had been done wrong, she did not challenge the health care providers, nor even come to a full understanding of what happened. More information and empowerment may not have changed the loss in this case but may have mitigated the trauma and forced improvement in treatment of similarly situated women.

One of the physician/researchers acknowledged that failure to communicate might be widespread and inhibited women’s ability to better advocate for themselves and their babies, suggesting:

...as a culture in medicine, we don't explain well enough to our patients, what we're doing, we don't partner with them as effectively as we should. And some of that is by virtue of just lack of time, you know, trying to see a lot of patients and a little bit of time. And so a more efficient way to address the medical needs but also make sure that patients feel that they are getting the education they need so that, you know, if there is an emergency if something goes wrong, they're aware that something is not right as well.

Her comments also suggested a tension, however, because while she saw patient education as a tool to increase self-advocacy, she also felt it shouldn’t be the “patient’s responsibility to make sure that they’re not ignored.”

Even so, there were times when women used knowledge to do just that. For one of the community members, self-advocacy meant knowing what kind of treatment they didn’t want to put up with and how to maneuver around it, she connected awareness of what superior care looks like to empowerment. When Medicaid assigned her to a particular clinic, she fought to go somewhere else. “I've been exposed to better health care. So that was, like, not acceptable for me,” she explained. Meanwhile, however, she observed that her friends tolerated treatment she would not accept and theorized that lack of exposure to better care made them more accepting of poor treatment:

I have a friend that had a baby after I had a baby, and she gave birth at [local county hospital]. And they have like a waiting room full of pregnant women waiting to have their babies and it blew me [away]. “Why are you waiting out here?” “Like, oh, cuz I have to wait, you have to wait.”

The community member contrasted this with another hospital where, when in labor, “you're going to call ahead, you know, you're going to be greeted at the door, they're gonna have a wheelchair for you – you’re going to go up an elevator to your room.” She posited that the women who lacked this knowledge – and, therefore, the ability to demand something better - were “all from lower income.” “Yeah, she has no idea that that it's completely different a couple blocks down,” she concluded.

Finally, community members expressed an interest in opportunities to advocate not only for themselves, but for other women. They wanted duty-bearers to make sure “we continue to have people of the community…that are affected the most by these things at the table to strategize and come up with plans to make sustainable change. Make sure they always at the table.”

Theme 6: Lack of data transparency and reliability

While not all participants spoke to this barrier, media and government participants repeatedly raised concerns about data transparency and reliability. They expressed skepticism the current systems in the USA report a true picture of maternal mortality data, given reporting discrepancies, non-standardized death certificate reporting, and lack of reportable accountable quality measures by Medicaid providers. The media participants argued that even among the systems that are in place to monitor health data in the United States, the data are still lacking. As one media participant noted:

When you think about that, and you think about the maternal data, right, so the CDC data, and they say, they know that it's not the best data, right, like, so, you know, there seems to be a big disconnect between these two large government systems, right, CDC and Medicaid being unable to, to kind of connect. They don't. But I think the big issue is really Medicaid.

The participants spoke of the different insurance companies that administer Medicaid, and how this created barriers to data transparency. One media participant said, “The idea that the data…that information is not available to policymakers and researchers and reporters - but really policymakers and researchers even right, --- is shocking and wrong.”

Several participants spoke to the importance of using data to drive change. One media participant said, “Data transparency, I think that when the light of day is shown on things, it helps drive change. Nothing motivates people more than then when people know what you're doing.” Similarly, a legislator asked: “How can we improve a woman’s chances when we don’t have a clear understanding of the problem due to lack of data?” She went on to note that Medicaid is “one of the major payers for childbirth in this country” and added, “Policymakers should have data that allows them to know, what are we getting for our money's worth?”

Multiple participants also spoke to the need to study the issue more deeply and go “beyond numbers.” A special interest group member, flagging disparities for people of color, asked, “So, what's happening? To me that would be an excellent thing to drill down into.” Similarly, a media participant urged researchers and policymakers to take a deep dive into some of these reasons and some of the barriers to healthcare” adding, “that can probably be best done in a qualitative way, to be honest with you, instead of a quantitative.” One of the legislators spoke positively about the state’s new maternal mortality review committee, describing it as “critical” data collection mechanism to improving the state’s outcomes.

Concern over data collection, accuracy, and depth was deemed important by these participants to ensure that duty-bearers can fully understand causes of maternal mortality, can motivate change, and can ensure that remedies to ameliorate maternal mortality are sound. It is our hope that this research study begins to address their feedback.