{"subscriber":false,"subscribedOffers":{}} Reversing The Rise In Maternal Mortality | Health Affairs

Narrative Matters

Maternal Health
NARRATIVE MATTERS

Reversing The Rise In Maternal Mortality

Affiliations
  1. Katy B. Kozhimannil ([email protected]) is an associate professor in the Division of Health Policy and Management, University of Minnesota School of Public Health, in Minneapolis. Support for this work was provided by a grant from the Robert Wood Johnson Foundation’s Interdisciplinary Research Leaders Program. The author acknowledges with deep gratitude the members of her family, especially Susan Backes and Tom Zumwalde, who provided input to ensure accuracy and who supported the telling of the family’s story. The author is also grateful for guidance from V. V. Ganeshananthan, Ezra Golberstein, and Rachel Hardeman.
PUBLISHED:Free Accesshttps://doi.org/10.1377/hlthaff.2018.1013

Abstract

A mother’s death in the 1950s tears a family apart; sixty years later, maternal mortality is on the rise again.

TOPICS

In the fall of 1997 I drove an hour from my college to the small rural town in central Minnesota where my grandmothers lived, to pay them what I thought would be a routine visit. The first stop was at my Grandma Lorraine’s. She’d left necessities out on a table for me: a twenty-dollar bill, a martini, and a note inviting me to join her at the casino. I decided instead to walk the six blocks to my Grandma Rita’s house.

Grandma Rita lived in a one-story, two-bedroom yellow ranch house on a corner, less than a mile from where she was born. Next to the home’s garage was a vegetable garden and half of a bathtub, painted blue inside and set up as a grotto for a two-foot statute of the Virgin Mary.

It was my first time sleeping over at my grandparents’ house as an adult, without my siblings, parents, or cousins. My grandpa had gone to the basement to do a puzzle, and I recall the warmth of the kitchen light as my grandma and I sat around her small, round kitchen table that night. The table was covered with a plastic gingham tablecloth, and on it sat the usual: two stacked plastic containers of cookies, the top one filled with homemade ginger cookies and the bottom with store-bought sandwich cookies. The walls were decorated with “fancy” plates that my grandparents had mounted—gifts from friends or relatives who had gone to far-off places like Niagara Falls. In that cozy, familiar kitchen I heard a haunting story. I knew that my grandma’s sister had died young and unexpectedly, but that evening as darkness fell, I heard the whole story of how maternal morbidity and mortality had shaped our family.

On December 28, 1947, Grandma had traveled thirty miles from her home in the countryside to give birth at a regional hospital in the largest city in Stearns County: St. Cloud, Minnesota. Her baby was stuck, and she spent four days in hard labor. Then she endured nearly a day of pushing, pain, and bleeding before she lost consciousness. My Uncle Tom was finally born on New Year’s Day, 1948, and both of them were hospitalized for two weeks after the birth.

“I don’t remember anything from that time in the hospital,” Grandma whispered, eyes downcast. Still, she said, she was grateful that the hospital had the capacity to care for her and her baby. It could have been worse.

After Tom came my Aunt Becky, and then her third pregnancy, which ended in a miscarriage. Her third child, my mother, was born in 1952.

Beattie

Three years later, in 1955, Grandma’s younger sister Beatrice, who she called “Beattie,” headed from a stint as an army nurse to a job in a Choctaw tribal jurisdictional area in Oklahoma. She got pregnant shortly thereafter with her fifth child, a daughter who would be named Jeannie. When she went into labor, she traveled off the reservation to give birth because there was no local hospital with maternity services. Beattie never left the hospital after giving birth to Jeannie. She died within days, from what was likely a pulmonary embolism—a blood clot in her lungs.

Beattie was twenty-nine when she died, leaving her five children behind. Her husband was unable to care for them but wanted the children to stay together. Grandma Rita, with three small children of her own, could not adopt all five, but she wanted to adopt the girls. Her other sister, Millie, offered to adopt the boys. That way, at least the children would be raised in the family. Still, Beattie’s husband insisted the children should stay together, and someone outside our family eventually adopted them in a closed process.

“Back in those days I thought about Beattie’s babies every day…every day,” Grandma told me. “When I fed my kids, I wondered who was feeding my nieces and nephews. I wondered if they were hungry. I also wondered if they knew about their mother.”

In the early 1970s our family finally reunited with Beattie’s five children, after the oldest child successfully searched for us. They had been raised by a family in northern Minnesota, not two hundred miles from their aunts, uncles, and cousins. Putting the pieces of our family back together was emotional for everyone, punctuated by joy at what we had regained and sadness about what had been lost forever. It feels like a small miracle that I now see one or two of Beattie’s children at family reunions, but the pain of the earlier separation never fully abated.

That night back in 1997 I lay awake in Grandma’s guest bedroom. The last photo taken of Beattie sat on the nightstand: a professional photograph of my great-aunt in her army nurse uniform and matching white hat, her dark hair carefully arranged in curls, her gaze slightly to the right of the camera. Looking at her gentle smile, I replayed the horror again and again. I was grateful that Grandma Rita had trusted me to hear this. I would not discuss Beattie’s death and her children’s separation from the family with Grandma Rita again in depth until days before her death, but the family silence had been broken.

Beattie was one of about 1,800 women who died giving birth in the US in 1955, when the maternal mortality rate was approximately 47.0 deaths per 100,000 live births, according to historical vital statistics records. During the 1960s and 1970s access to health care and the quality of health services improved, and maternal mortality decreased. In addition, family planning improved dramatically as birth control became widely available and abortion became legal. Medicaid was established in 1965, and in an effort to improve birth outcomes, a separate eligibility category for pregnant women was added in 1984. Clinical innovations such as the development of safe surgical birth by cesarean further improved health outcomes for mothers in the US. More hospitals were built, and perinatal care was regionalized. These factors all contributed to massive improvements in maternal health. By 1978, the year my mom gave birth to me, the maternal mortality rate had dropped to 9.6 deaths per 100,000 live births. Maternal mortality in the US reached its lowest point in history in 1987, when 6.6 women died per 100,000 live births, according to the Centers for Disease Control and Prevention. That year about 250 US mothers died giving birth.

When Grandma opened up to me about our family’s trauma, she had reason to hope that the darkest days for new mothers were in the past. Birth was safer for her daughters than it had been for her. So why, by the time I was giving birth to my own children, did that change? Since the conversation with my grandma in which I truly understood, for the first time, how maternal mortality had shattered the lives of those I loved, I focused my professional work on maternal health.

Maternal Mortality On The Rise

In the 1990s the maternal mortality rate in the US began to increase. Between 1987 and 2010 it more than doubled, reaching 16.0 deaths per 100,000 live births. But as the rate ticked upward, the trend was not making headlines. In graduate school in the 2000s I learned that childbirth was the most common and costly reason for hospitalization, yet it was not routinely studied. Shockingly little was known about safety and the quality of care in childbirth, and shockingly little attention was paid to the women who died, or nearly died, giving birth.

Blame for the recent rise in maternal mortality falls upon the policies and systems that do not support the health of women before they become pregnant, during pregnancy, at the time of childbirth, and postpartum.

Notably, some of the trends that accompanied the prior decline in maternal mortality have begun to reverse course. From the late 1980s through 2009 the percentage of reproductive-age women who reported being uninsured at some point during the prior year increased substantially. Even for those with health insurance, maternity care became more costly, especially with the rise of high-deductible health plans, and many women experienced gaps in health insurance coverage during the postpartum period. Access to reproductive health services has declined—a trend that is associated with more restrictive laws and policies enacted in the 1990s and 2000s. Hospitals and clinics have closed or consolidated services, and shortages in the maternity clinician workforce have affected access to care, practice arrangements, and relationships between patients and their care teams. Additionally, fee-for-service payment models have incentivized procedures over physiological processes in childbirth, and some of the medical procedures that were developed to support safe childbirth—such as labor induction and cesarean delivery—became overused when not medically necessary.

By 2010, when I gave birth to my daughter, the US maternal mortality rate was worse than that in fifty-six other countries. I would have been statistically safer giving birth in Egypt, Iraq, Latvia, Mongolia, or Uruguay than here. That year, the US maternal mortality rate was the highest it had been in decades. Nearly 1,000 women died giving birth, and more than 60 percent of these deaths were likely preventable, according to a 2018 analysis by nine state maternal mortality committees. In the US no group bears this burden more heavily than black mothers, who are more than three times as likely as white women to die giving birth and—if they survive—more than twice as likely as white women to bury their babies before their first birthday. In addition, rural mothers are more likely than urban mothers to lose their babies to infant mortality. They have to travel farther to receive care during pregnancy and childbirth, putting both them and their babies at risk. The perspectives of the people, families, and communities who have endured the greatest losses should guide policy responses to maternal mortality in the US.

Reversing The Rise

A mother’s death is a searing, unimaginable tragedy, the effects of which last for decades. In this country we cannot turn our backs on our mothers. The US must take action to prevent needless deaths among women who have just given birth. To do so, I believe, will require drastic improvements in five areas: data on maternal deaths and near misses, access to care, birth equity, accountability, and—most importantly—listening to the mothers who were nearly lost and the families left behind by maternal death.

The first step toward making childbirth safer again is the establishment of a national maternal mortality review committee and support structure for consistent data collection within and across states so that we can understand how each maternal death fits into broader patterns of risk. Other countries do this and are able to respond quickly to emerging crises in maternal health. Only about half of all US states have maternal mortality review committees. I’ve served on Minnesota’s committee since 2012. Every six months we meet to discuss maternal deaths in the state, reviewing every bit of evidence available (from clinical records and autopsy reports to obituaries) to determine whether the death was preventable and to try to draw broader lessons from patterns that emerge across stories. To my knowledge, the data from our work in Minnesota have never been publicly released, and our numbers are too small for meaningful statistical estimates. It’s heartbreaking to know that our work has little influence on the rising tide of maternal mortality. This should change.

Second, access to care must improve. Health insurance coverage before, during, and after pregnancy helps women afford the care they need. Recent efforts to repeal portions of the Affordable Care Act that require health plans to cover maternity care as an essential benefit threaten financial access to care during pregnancy, and Medicaid eligibility policies that drop pregnancy-related coverage sixty days after childbirth contribute to health insurance “churning” in the postpartum period. Also, women need access to care in their own communities whenever possible. To keep maternity units open, policy efforts to address workforce shortages and the financial challenges of low-volume obstetrics are needed. More than half of rural counties currently have no hospital that provides maternity care, and in those communities there is a need for housing and transportation support for mothers who travel to give birth in distant communities—as well as for emergency response support locally.

Third, we must directly confront the unconscionable racial disparities in maternal death. To do so requires a recognition of the role of racism—at an interpersonal level and at a structural level—in creating or denying opportunities for health, including the chance to flourish during pregnancy, childbirth, and early parenting. Key to this work are efforts aimed at improving workforce diversity and addressing unconscious bias among clinicians and within health care institutions. A recently published Council on Patient Safety care bundle provides concrete guidance on steps that clinicians and health systems can take to reduce racial disparities in care during pregnancy and childbirth. But the work of improving racial equity in childbirth extends well beyond the health care system to encompass the social determinants of health, including employment, housing, education, food access, environmental health, and criminal justice—all of which require policy-level action.

Fourth, in childbirth, it is essential to hold health plans, health care delivery systems, and clinicians accountable for what matters and to make it easy to do the right thing. The development and use of evidence-based tool kits and protocols can improve the safety of clinical care for every birth. California provides an instructive example through the efforts led by the California Maternal Quality Care Collaborative, which has successfully deployed care protocols that have led to demonstrable reductions in maternal morbidity and mortality. Additionally, payment reform that prioritizes outcomes over procedure use holds potential for reducing the financial incentive to overuse services.

Finally, and most importantly, reversing the rise in maternal mortality requires listening to mothers. It is not sufficient for mothers to be present: They need to be front and center in the decision making in each of the areas described above. Women’s questions and concerns about their health and safety during pregnancy, labor, delivery, and postpartum must be heard. The onus is on health care delivery systems and those individuals who are clinically responsible for care during childbirth and afterward to find ways to heed every warning.

Reversing the rise in maternal mortality is possible, and California has the track record to prove it. From 2006 to 2013 California bucked the national trend, and maternal mortality declined by 57 percent, from 16.9 deaths to 7.3 deaths per 100,000 live births. Many of the ideas outlined above come from California’s experience, and that state gives me great hope. At the same time, potential policy decisions on the horizon could pose a threat to maternal health. Efforts to roll back the Affordable Care Act threaten to dramatically reshape and scale back state Medicaid programs, which finance nearly half of all births nationally. Furthermore, court decisions and policies restricting access to family planning and abortion services threaten women’s health and disproportionately affect women who are medically underserved, including those in rural, low-income, or black communities.

‘It’s A Shame What Is Happening To Our Moms’

In 2017 Grandma Rita was ninety-four years old and living in a nursing home, where she was receiving hospice care. Twenty years had passed since she’d told me about Beattie. On her bedside table, she kept an article cut from a newspaper: a Washington Post op-ed I’d written with a colleague about the challenges rural women face to give birth.

I was proud of the article, which had been picked up on social media by members of Congress, but I was prouder still of the attention it garnered at the nursing home in rural central Minnesota where my grandmother lived. She showed it to every nurse, doctor, personal care attendant, food service staff member, clergy, family member, and volunteer who walked through the door of her room.

On a cold day in mid-December 2017 I drove across the windswept prairies to visit Grandma, bringing my own daughter with me. It would be the last time I spoke with her. On her windowsill, not one foot away from the tattered copy of the op-ed I’d written, was the last picture taken of Beattie, in her nurse’s uniform. It was the same photo that I remembered from that evening two decades ago in Grandma’s old home. Grandma looked at the picture and said, “You know…my sister Beattie...I miss her every day. I think about her every day.” She touched the well-worn piece of newspaper lightly and said, “It is important that moms get the care they need. I am so surprised about how many places have no hospitals. It’s a shame what is happening to our moms. I could have died if I had not been able to get to a hospital when I gave birth.”

Grandma Rita died four days after my visit.

I have Grandma Rita’s nose, her love of books, and her pathological sense of responsibility. On June 20, 2010, exactly sixty-one years after she gave birth to her second child, I gave birth to mine, also a daughter. I named her Rita.

The stories I tell my daughter Rita about her great-grandmother reveal the fragility of life and the depth of women’s strength. If we can turn the pain of maternal death into righteous indignation about the loss of something so precious, we can take action to ensure that for our daughters and granddaughters every birth is sacred and safe.

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