Massachusetts General Hospital Vincent Program in Global OB/GYN
Listen and Heal: Attention to Concerns and Fears Improves Outcomes
Declercq, E and Zephyrin, L (2020). Maternal Mortality in the United States: A Primer. https://www.commonwealthfund.org/
As clinicians who are trained to respond to emergencies, we often treat people's experience of care as a luxury that we can only attend to after making them safe. But our emerging understanding of the maternal mortality crisis indicates that this logic may be backwards. Attending to people's lived and embodied experience may actually be one of the most important ways to keep them safe.
Today, a person living in the United States is 50% more likely to die from giving birth than her own mother was. These risks are several times more severe for people from historically marginalized and oppressed groups--Black people, Native people, trans people, immigrants. In nearly every avoidable maternal death, the fundamental failure found in the root cause analysis was not a lack of technical prowess but a systematic inattention to their concerns and fears. It turns out there is a very fine line between the "clinical intuition" that guides our decision making in these moments and what is sometimes referred to as "implicit bias," a set of assumptions that belies a lack of curiosity about what people are experiencing and a lack of belief in their legitimacy.
In his recent memoir A Promised Land, former President Barack Obama wrote, "To be known. To be heard. To have one's unique identity recognized and seen as worthy. It was a universal desire." This reflection is the bedrock of trust that all healing professions depend upon. And it provides a basis to understand the current maternal health crisis, the current COVID response crisis, and so many others. The existing trust between our health systems and those they are designed to serve is fragile, particularly among those who have been historically left behind. And while trust always has a moral dimension it is also an output of a system that is working: every system is perfectly designed to get the results that it gets. We must reimagine the system that currently exists. It is not the job of the public to be more trusting of the health system. It is the job of the health system to be more trustworthy.
Declercq, E and Zephyrin, L (2020). Maternal Mortality in the United States: A Primer. https://www.commonwealthfund.org/
-- Neel Shah, MD, MPP, FACOG Dr. Shah is an Assistant Professor of Obstetrics, Gynecology and Reproductive Biology at Harvard Medical School, and founding Director of the Delivery Decisions Initiative at Harvard’s Ariadne Labs. His work focuses on partnering with people giving birth to design solutions that enable them to thrive. As an obstetrician-gynecologist at Beth Israel Deaconess Medical Center in Boston, Dr. Shah cares for patients at critical life moments that range from childbirth to primary care to surgery.
Notes from the Field
The Lost Dreams of Maternal Mortality:
Intersection of Politics, Policy, Culture, and Trust
Annekathryn Goodman, MD, MPH
Part of my job as a gynecologic oncologist is to support my obstetrical colleagues at Massachusetts General Hospital when a catastrophic situation arises. During and after these crises I often wonder what happened in the life of a particular woman prior to her arrival at MGH that may have influenced the obstetrical outcome. I want to share a story from a few years ago of one patient whom we could not save.
It is 2:00 am and my phone rings. One of my colleagues in obstetrics calls me from the surgical intensive care unit. A 23-year-old woman is bleeding to death. Can I come help? I pull on a T-Shirt, jeans, and cowboy boots and run down the hill from my house to the hospital. It is Christmas and it is freezing but I do not notice.
Halfway down the hill, my beeper goes off. The patient has had a cardiac arrest and they are now coding her. I run even faster. As I get into the unit, I see my beloved coworkers working to resuscitate her. Her obstetrician gives me more details. The patient, I will call her Dora, came into the labor and delivery unit on Christmas Eve in active labor. She was seven months pregnant with twins. She had a uterine infection, a high fever, and the babies were dead. She quickly delivered the tiny bodies and then seemed to stabilize. However, soon after her blood pressure dropped and she started to bleed.
I move to the bed to examine her. The Intensive care unit team has brought her back. She has blood pressure and a heartbeat again. A breathing tube is guiding her breath and helping to push oxygen around her body. I see that she is actively bleeding from her uterus. When an infection settles in a pregnant or postpartum uterus, the uterus cannot contract and contain bleeding. As this infection progresses, her body loses the capacity to clot and stop bleeding. I confer with the team. They are hanging blood and clotting factors. Multiple antibiotics were started hours ago. She is now on three pressor drugs to maintain her blood pressure. We decide that the only slim chance to reverse this terrible process is to remove her uterus, the source of all this chaos.
As Dora is moved to the operating room, I quickly find her boyfriend, who is crying in the waiting room. Dora and her boyfriend are from Puerto Rico. Their English is limited. I limp through a quick conversation with him and learn that Dora is very religious. I page the Catholic priest and he and I race to the operating room – he in black cloth and collar, me in jeans. We are beyond worrying about appropriate OR attire. The priest blesses Dora. The obstetrician and I perform the hysterectomy, stopping briefly to perform chest compressions when her heart fails. We get her heartbeat back and the surgery is finished in thirty minutes. Dora seems to rally after that but within six hours she has gone into kidney failure, another consequence of sepsis. Despite our maximum efforts, she dies 48 hours after the birth of her lost dreams.
What happened? How could we not save her? I carry so many things that I have learned with me. All the science – the physiology of sepsis, kidney function, obstetrics – and all the technology, e.g., how to do a perfect hysterectomy. Yet I believe that what killed Dora was a fateful decision she made eight weeks earlier because of a lack of trust. Dora had a three-year-old daughter out of an abusive relationship. She fled with her child and found love and safety in Boston with her new boyfriend. When she became pregnant, it was a gift from God who had heard all her prayers. But at 20 weeks of pregnancy, her membranes ruptured. Seen in the neighborhood clinic, she was gently told that her pregnancy was doomed and she herself was in danger of a serious infection. She refused to see that doctor again and tried another and then another. But the news was always the same. So she stopped going to clinic all together. She could not consider terminating her pregnancy; nor could she trust these Boston doctors who did not seem to understand how vital it was for her to keep it. Maybe she worried about losing her boyfriend and secure housing if she could not give him the children he wanted. Ultimately, however, it's impossible to know what was in her mind. The clinic staff agonized over their failure to reach her. They sent a social worker to her house and left many phone messages. But in the end the cultural and social divide was too great.
So, I carry Dora with me now. I never knew her in health and happiness. But I puzzle at how we could have done better. How we could have found a way to embrace her and help her acknowledge the terrible fate of a pregnancy gone wrong. Understanding disparities in health care, learning how to listen and reach people, sorting out how to empower patients even in the midst of bottomless loss are as complicated tasks for us as all the other facets of medicine.
Social determinants of health are well known as a public health concept. Determinants ranging from poverty and discrimination to lack of access to food and education contribute to poor medical outcomes. For someone who is critically ill or who dies, their illness may be the endgame of a long trajectory of such barriers. There are many ways to explain the same story and on a larger scale to interpret data and statistics.
In medicine, healthcare providers take care of each individual patient - one at a time. When there is a complication, a poor outcome, or a death, it is very personal. We anguish over the details of the case, discuss the patient at our conferences, and consider changes to particular decisions and interventions to prevent the tragedy from happening again. At the same time, outcomes for a particular patient may be traced to policy-level decisions about healthcare infrastructure, including healthcare planning, provider education, and even government funding allocations. Outcomes may also be related, as in the case of Dora, to distrust of the healthcare establishment due to a lifetime of discrimination, along with language barriers, lack of educational opportunities, and housing insecurities.
Maternal mortality ratios (MMR), the number of maternal deaths per 100,000 live births during a given time period, have been increasing in the United States. In 1990, 10 deaths per 100,000 live births were recorded. Recently an MMR of 26.4 per 100,000 was noted, with 60% of the deaths deemed preventable (Blackwell et al., 2020). It is distressing that between 38% and 50% of maternal deaths may go unreported in the United States (Horon, 2005).
A recent study illustrated the significant variations in maternal mortality (MMR) by state in the United States by comparing each state’s statistics to another country (Chin et al., 2020). For instance, Massachusetts has an MMR of 14, equivalent to the country of Qatar, while Louisiana has an MMR of 72, equivalent to Kyrgyzstan. (See chart below.) Demographics and disease may vary slightly state by state. Yet the astonishing differences in death rates for young pregnant or recently pregnant woman begs the question: what other factors embedded within the fabric of our society and the state laws and regulations pertaining to reproductive health lead to these differences in maternal mortality?
It has been well documented that there is a greater than three-fold higher MMR for non-Hispanic black women compared to non-Hispanic white women. These differences may arise from structural racism and implicit bias in how different groups have access to and receive care. The geographic differences may reflect these disparities but also identify the consequences of health policies and medical insurance reimbursement that vary by state mandates. For instance, these government policies may lead to the closure of maternity units and loss of access to specialized care both by the urban poor and in rural communities. The Kaiser Family Foundation reported on the variations in public funding for family planning by state (see chart below). As Chin writes “states have become the battleground for an array of public policies shaping access to healthcare and social services that affect women’s health and maternal mortality.”
As clinicians, we care for patients in the present and at the moment of their great need. But these patients, like Dora, come in carrying the story of their whole life, where they were born, what resources were available, what experiences led them to trust or mistrust – all the forces that have brought them to this moment. As the late Dr. Jack Geiger taught, it is “our right and responsibility as doctors to ‘treat’ hunger, poverty and disparities in healthcare, as directly and openly as we treat pneumonia or appendicitis.”
Author Bio Annekathryn Goodman, MD, MPH is a gynecologic oncologist at MGH, a member of the MGH Global Disaster Response team, and Director of Strength & Serenity MGH Global Initiative to End Gender-Based Violence.
Bibliography
Blackwell S, Louis JM, Norton ME, Lappen JR, Pettker CM et al. (2020). Reproductive services for women at high risk for maternal mortality: a report of the workshop of the Society for Maternal-Fetal Medicine, the American College of Obstetricians and Gynecologists, the Fellowship in Family Planning, and the Society of Family Planning. Am J Obstet Gynecol. 222(4):B2.
Chin JJ et al. (2020). Maternal mortality in the United States: Research gaps, opportunities, and priorities. Am J Obstet Gynecol 223(4):486-492.
Declercq, E and Zephyrin, L (2020). Maternal Mortality in the United States: A Primer. https://www.commonwealthfund.org/
Chin JJ et al. (2020). Maternal mortality in the United States: Research gaps, opportunities, and priorities. Am J Obstet Gynecol 223(4):486-492. Copyright Elsevior 2020.
Declercq, E and Zephyrin, L (2020). Maternal Mortality in the United States: A Primer. https://www.commonwealthfund.org/
Recommended Reading
Maternal Mortality in the U.S. – Current Statistics; Data Accuracy
Take a look at nine organizations on the front lines of the fight to save Black mothers.
Patient navigators can improve patient outcomes. “By addressing many of the disparities associated with language and cultural differences and barriers, patient navigators can foster trust and empowerment within the communities they serve.”
The Losses We Share “Perhaps the path to healing begins with three simple words: Are you OK?”
Lost Mothers “When a new or expectant mother dies, her obituary rarely mentions the circumstances. Her identity is shrouded by medical institutions, regulators and state maternal mortality review committees. Her loved ones mourn her loss in private. The lessons to be learned from her death are often lost as well.”
Announcements
January is Cervical Health Awareness Month Patient resources and educational materials on cervical cancer are available through the Foundation for Women’s Cancer website.
Virtual Seminar Series: Gender-Based Violence in Disasters & Humanitarian Settings Provided by Massachusetts General Hospital, Global Health & Mass General Brigham
Next session: Tuesday, February 16, 12:00-1:00 pm EST
For more information and to register: agoodman@mgh.harvard.edu
Global Cancer Care Tumor Boards
The International Gynecologic Cancer Society (IGCS) hosts online tumor boards with 14 other countries. If you are interested in joining one of these conferences, please contact Dr. Tom Randall trandall@mgh.harvard.edu or Dr. Ak Goodman agoodman@mgh.harvard.edufor details.
Acknowledgments
With gratitude to our teachers
Thank you to the neighborhood health centers, the staff, nurses, midwives, and doctors of the
greater Boston area who provide amazing obstetrical care to the women of Boston.
Deep appreciation for funding support Karen Johansen and Gardner Hendrie, Al and Diane Kaneb, Vincent Memorial Hospital and Vincent Club,
Westwind Foundation, Bank of America Foundation, Wyss Foundation
The Strength and Serenity Global Initiative Against Gender-Based Violence seeks to create a worldwide consortium to share best practices, develop training programs, and publish on issues pertaining to sexual exploitation and abuse with the goal to end gender-based violence. To learn more, visit our Web site. We welcome your feedback about this newsletter. Please e-mail questions/comments to globalobgynnews@partners.org.
