Mariam, 34, was in labor with her first son when she started experiencing severe preeclampsia, a condition where blood pressure can get dangerously high. The Seattle resident observes hijab and was afraid of how she would be treated at the hospital after hearing horror stories of other Muslim women delivering. To her dismay, her experience was worse than she anticipated.
“I was not allowed to see my son after I gave birth until the next day,” Mariam said tearfully. “The staff thought I was inadequate and I remember crying I just want to hold him,” The nurses didn't explain why she couldn't see her son and treated her “like she was crazy,” she said. She believes her mistreatment is tied to her not only being Muslim but also Black—she was born in Somalia. She said her horrendous experience makes her think twice about having another child.
“I kept thinking that I was waking up from a bad dream,” she said.
In September, the Centers for Disease Control and Prevention released a special report that looked at racial and ethnic disparities in pregnancy-related deaths in the U.S. from 2007 to 2016. Indeed, racial disparities are a big part of this problem—Black women are three to four times more likely to die while pregnant or in the months after birth than are white women, and the CDC has also noted that more than half of pregnancy-related deaths are preventable.
It is no surprise that, as another recent study shows, women of color can feel disempowered during pregnancy, birth, and postpartum care thanks to providers delivering health information in a leading way rather than allowing the patient's true informed consent in decision-making. While data from the new CDC report is critical to understanding why U.S. maternal mortality rates are at an all-time high and women of color are being affected most, there's a segment of the population that is not properly accounted for: Muslim women who live in the United States. In fact, CDC reports on maternal mortality are limited to five racial/ethnic groups with no indication of religion: white, Black, Hispanic, Native American, and Asian/Pacific Islander. In addition, there is no breakdown of Middle Eastern, North African, or South Asian women, racial groups where Muslim women are likely to be represented.
“She made me feel so bad about myself,” said Tonni N., 42, about her OB/GYN. “I wish I wasn’t pregnant; this is so difficult.” Tonni, who lives in Chicago, said her provider was difficult to reach and often dismissive of her concerns about feeling mentally unwell. She decided to not seek mental health care until her symptoms conditions worsened.
Tonni came to the U.S. from Bangladesh and said she's faced discrimination on multiple levels. In addition to having an accent, she also wears the hijab. “There were times when I thought I was going crazy,” she said. She had multiple panic attacks and painstakingly searched for another physician during her second trimester. After several rejections from other doctors, Tonni was able to identify another Muslim OB/GYN who also wore hijab. When she shared that she was feeling anxious and depressed, her OB/GYN was much more sympathetic and helped Tonni get counseling, where she was diagnosed with anxiety.
The lack of data on Muslim, Middle Eastern, North African, and South Asian women is because the CDC uses race classifications set by the National Center for Health Statistics and the U.S. Census Bureau, said Emily Petersen, a medical officer and OB/GYN in the CDC's Division of Reproductive Health. Petersen said the CDC does this “to be consistent with the classification of race/ethnicity for pregnancy-related deaths and births for the time period covered. Consequently, Middle Eastern women would be classified as non-Hispanic white, and South Asian women would be classified as non-Hispanic Asian (which needed to be combined with non-Hispanic Pacific Islander in [the] report for stability of analysis).”
Furthermore, Petersen acknowledged that looking at data in more specific racial groups might have limitations. “We are limited in our ability to further analyze and report on more specific race/ethnicity categories due to the potential of unreliable pregnancy-related mortality ratios when analyzing smaller numbers of deaths." Plus, data on religion are not collected on vital records like death certificates and birth certificates so the CDC isn't able to analyze by religion, she said.
While it's true that minority populations receive lower-quality healthcare, there are many aspects of care that are not properly assessed. For example, there is often inadequate assessment of, and cultural adaptations to meet patients' needs. Seven million American Muslims, while ethnically and racially diverse, share religiously informed values that influence their expectations of healthcare. Research also shows that the political climate has an impact on the health of Muslims.
Aasim Padela, the Director of Initiative of Islam & Medicine and an emergency medicine physician at the University of Chicago, lamented the lack of healthcare research on Muslim Americans.
“Although patient-centered care is a priority and the reduction of healthcare disparities an ethical mandate, the U.S. healthcare system overlooks how minority religious groups experience healthcare and thus inadequately meets their religious needs," Padela said. "A case in point is American Muslims where the absence of data on religious affiliation and religiosity within healthcare databases leads to a gap in knowledge regarding this group's aggregate health outcomes. Moreover, we do not know what their religious and spiritual needs in healthcare are, and if unmet, what disparities and inequities are produced.”
The little research that is available suggests patients are concerned about interacting with a medical system that might not respect their faith.
“As far as Muslim women and their values and needs, there are many community-based studies showing the import of modesty to their health decisions and our own work shows nearly 50 percent delay going to the doctor out of concern that their modesty needs won’t be accommodated." Padela said. "I have seen this myself as an ER doctor where some women minimize concerns, and even desire to leave the ER, when a female physician is not present."
Padela acknowledged that it may be impractical to base hospital staffing on always having female physicians available, but providers should make some accommodations in terms of more modest gowns and be better in respecting patients' concerns and communicating our understanding and attempts to accommodate them.
Kashfia, another woman who observes hijab, recounts being pregnant and mistreated when she was expecting her first son. “I just was not given the right information at the right time. When I asked, it felt like I was annoying [my doctor] even though I didn’t understand.” She said her doctor had seemed to retaliate against her. During her second pregnancy, Kashfia felt more confident in advocating for herself and she opted early for a midwife who used holistic treatment instead of the traditional care.
It’s critical to connect with patients on a deeper level, said Aalia Al-Barwani, a family medicine physician who also observes hijab and practices in Birmingham, Alabama.
“It is intimidating [for patients] to ask a question to begin with. Even though I am a physician, people automatically assume that I don’t speak English or I have to have a husband to be heard,” she added, noting how much harder it may be for Muslim patients to speak up. She goes on to say how African Americans are perceived to be native whereas Muslim Americans are perceived to be foreign, which can also impact how the prejudice is being played when it comes to not just pregnant women receiving care, but in all other domains of medicine.
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