“Oh my goodness, I know you. You took care of my baby in the NICU.”
I met her in the parking lot of an office supply store a few years ago.
She called me by my full name so I knew I must have cared for this woman’s child during my time as a nurse in the neonatal intensive care unit of a major hospital. She reminded me about her daughter Bethany, who was born premature with gastroschisis, a serious birth defect of the wall of her abdomen.
Bethany’s intestines were outside of her body, having escaped through a hole beside her umbilical cord, while she was developing inside the uterus. This meant she had a series of surgical procedures over several weeks and spent a few months in the NICU.
Her mom explained that at 14, Bethany was now on her way to high school, the same school as my oldest daughter. We agreed to meet during parents’ night, where I saw that Bethany had grown into a beautiful brown, smart, athletic, energetic and personable young lady.
I was a nurse in the NICU for eight years. For an additional 25 years, I transferred tiny and sick newborns to and from the NICU. I am a woman of color and I believed I cared for infants of all races the same—with all of my ability and compassion.
But new research shows not every infant is treated the same.
A recent study published in Pediatrics found that “Wide racial and/or ethnic differences in quality of care delivery do exist between and within NICUs.” In 134 California NICUs, researchers analyzed the care of 18,616 very low birth weight infants between January 2010 and December 2014. The study showed that white infants scored higher on measures of process compared to African American and Hispanic infants. Simply put, white infants had better care—and the higher the quality of care in the NICU, the greater the disparity between African American and White children.
Most people would question how anyone could discriminate against a human being so tiny that he or she can fit in the palm of a hand. Some babies are so small and fragile that you can literally watch their hearts beat through their rib cages.
We need to address these disparities, which reveal the unconscious bias that begins to affect each person almost immediately after birth—even when that birth is too early.
World Prematurity Day November 17th has the goal of increasing awareness and prevention of all premature births. But based upon the March of Dimes Premature Birth Report Card, premature births among black women are 48 percent higher than births among other women. And data from the 2016 National Birth Statistics Report, indicates that, rather than decreasing, preterm birth rates among black and Hispanic infants continue to inch upward.
This is why addressing the unconscious bias that affects them is an urgent and growing issue. In the United States about half a million babies are born prematurely, and the costs associated with just one baby being born three to four months early can be as high as $1 million, depending on the number and nature of problems that the infant faces.
As a nurse and member of healthcare’s most trusted profession, I would have assumed that disparities of care clearly couldn’t have to do with NICU nurses. Yet a constellation of factors that include the entire healthcare team can contribute to such disparities based on race and ethnicity. This can show up in the interactions between parents and members of the healthcare team and also in parents’ interactions with the broader healthcare system.
The Pediatrics study shows that two particular metrics of disparate outcomes in premature infants are the administration of steroids to the mother before delivery to help the infant’s lungs mature; and the delivery of breast-milk feedings while the infant is in the hospital.
There are cultural undertones to both of these circumstances. That is because both factors are informed by relationships and communication between providers and patients. Administration of prenatal steroids is complex because the mother is given medication to help mature her baby’s lungs while the baby is still in the uterus. There is a proven window of opportunity for administering steroids to mothers of preterm infants who are in labor, and specific criteria must be satisfied.
If mothers arrive at the healthcare setting after this window of opportunity has closed, their infants will not reap the benefit of this life-saving treatment. The reasons why a mother does not arrive at the hospital in time may have to do with cultural dissimilarities between the mother and the healthcare team.
Additionally, healthcare professionals with preconceived notions about who breastfeeds, and who doesn’t, may keep some from even bothering to talk to mothers of color about providing breast milk to their preterm infants. They may assume a non-white mother’s life is too complicated to follow through on pumping every two to three hours to build up and maintain a milk supply.
Yet some hospitals are making efforts to address these gaps in communication. At Rush University where I work, for example, nurse researchers such as Paula Meier support a specific goal to engage all mothers by changing the dialogue to refer to “breastmilk as medicine for your baby.”
Such messages and information that resonate can improve breastfeeding rates in racial ethnic minority mothers.
Preconceived notions about specific patient populations can influence all interactions. For example, if mothers have inadequate or no prenatal care, the mother is labeled non-compliant. But a better approach would be to find out if the provider gave the mother the information she needed in a way she could understand. If there is not a trusting relationship between the provider and the patient, and the provider is not privy to a mother’s challenges in following the treatment plan, she may be unfairly judged.
Healthcare professionals must meet mothers where they are, bracket their preconceived notions and work to establish trusting relationships that ultimately lead to better outcomes for mothers and their preterm infants.
A clash of religious beliefs or cultural practices may also serve as hindrances in the provider-patient relationship and block a relationship of trust. Parents need to feel comfortable expressing their beliefs, regardless of whether they match the beliefs of the provider. While it is important to be realistic with parents, faith too, is important for so many.
I recall that Bethany had a lot of strikes against her, and the physicians advised that she might not survive. That day in the parking lot, her mother reminded me that when she was in the hospital, I told her, “God has the final say so.” She said she held on to those words as she sat at her baby’s bedside day after day.
We must make sure that families are comfortable in the NICU environment and that they are encouraged and supported in expressing their religious and cultural beliefs. Parents can sense when the team have psychologically given up on their babies, and this may play out as less aggressive treatment decisions.
The diversity of health care professionals and lack of cultural competency of healthcare providers is part of the problem. Seventy percent of the current nursing workforce is Non-Hispanic white, as compared to the U.S. population which is rapidly becoming more diverse. It is expected that in 25 years that minority populations will be the majority in the United States.
With a lack of diversity among healthcare professionals, patients of color perceive that communication is less open and patient-provider rapport is impaired. When communication is strained due to lack of cultural diversity in healthcare, unconscious bias can be rampant.
The #123forEquityCampaign from the Institute for Diversity in Healthcare Management requires that hospitals who sign the health equity pledge must provide all healthcare professionals with cultural competency training.
This is an important step in achieving health equity and can grow into a movement to improve the quality of care and health equity for all.
All patients deserve this. Even the smallest ones.