In the United States, maternal deaths and serious complications are an urgent health problem. This is not news. So far, efforts to solve this problem in a consistent and fair manner have proven to be insufficient. The differences in results based on race and ethnicity are shocking and persistent. Our approach must change, and to change direction, we need to reorient our collective view and treat patients as partners in their own healthcare.
Under normal circumstances, poor maternal outcomes can be traced back to three fatal “Ds”-delay, refusal, and dismissal. Medical staff often regard chest pain as heartburn, classify brain fog as “pregnant brain”, or simply ignore women’s intuitions about something incorrect. In addition, health care delays treatment concerns about warning signs, delayed laboratory test results, denial of patient deterioration, and ignorance of women’s concerns. In other words, the source of many preventable deaths and complications lies in the provider’s and sometimes the patient’s own disregard of the patient’s point of view. Education is power, and it requires women and their providers to make joint decisions. In my lifetime, I want to reach the point where I never have to hear another woman or surviving family member lament that the results may be different, “As long as I speak out or insist that I hear my concerns.”
I am the CEO of the Preeclampsia Foundation, a national patient advocacy organization for preeclampsia and related hypertension in pregnancy. We helped promote the “Prevention of Maternal Deaths Act” signed into law in December 2018.Other organizations that helped us sign the bill into law include American College of Obstetrics and Gynecology, This Maternal and Fetal Medical Association, This March coins and Maternal and Child Health Association.
Soon after, we established The voice of MoMMA — A broader alliance of patient-led organizations dedicated to addressing other major causes of pregnancy-related deaths and complications. We are working with the Department of Health and Human Services and Premier Inc. to develop a comprehensive data-driven program in the United States to improve outcomes for mothers and babies. This is a two-part work that first requires extensive data analysis of obstetric practice and delivery results, and then implements evidence-based interventions in a cohort of 220 hospitals.
It is important to convene a variety of patients and family members to consider what questions should be asked, what data to collect, and how to measure these data. Later, we will work with the research and clinical leaders of the program to help understand the results and translate them into “news you can use” at the community level. For example, one of the loud and clear things we hear from patients of color is that in the absence of recommendations for concerted action for providers, health systems, and the larger community where they live, work, play, and pray, differences The data is frustrating and stressful. .
Although hospital-based initiatives are important, it is clear that problems can occur long before and after delivery. The “prelude” and “end” of the delivery experience are where we can find the answers to save lives. The patient’s hypertension received timely treatment in the hospital is an indicator of the quality of care, but how did the patient’s blood pressure become so high in the first place, and what can be prevented? One patient recalled the disrespect that was ignored by the provider when she encountered a problem during the prenatal check-up. Throughout the remainder of her pregnancy, she will have self-doubt about the legitimacy of her symptoms and will not trust her provider, which leads to a higher risk of communication failure and adverse results. The mother and baby looked healthy when they left the hospital after a traumatic childbirth experience. Later, the mother’s PTSD was reduced to “baby depression”. As a patient partner, our goal is to ensure that the program integrates protocols in the hospital environment to record and interpret the patient’s narrative before, during, and after delivery.
Although data will be invaluable, we believe that this wide range of data must be best explained and utilized through storytelling and human experience.
Photo: Prostock-Studio, Getty Images
