Interactions with Healthcare Providers and the Effect on Maternal Morbidity and Subsequent Attitudes Towards Healthcare Systems 1 2 Woodlynn Daniel, BA ; Martine Hackett, PhD, MPH
Conclusions
1Donald and Barbara Zucker School of Medicine at Hofstra/Northwell 2Hofstra University, School of Public Health
Background Compared to other wealthy nations, the United States has the worst maternal and infant mortality rates, mostly driven by racial disparities. According to the most recent data from the New York State Department of Health, Nassau County has an infant mortality rate of 9.4 per 1,000 live births for black infants (versus the 2.2 for white infants), which is higher than the black infant mortality rate in New York City. Additionally, the maternal mortality rate in Nassau County is 28.3 deaths per 100,000 (between 2013-2015), which was higher than every borough but the Bronx.
There is no one factor that has been proven to cause these statistics, but rather a combination of trends that can be attributed to these inequities. This project was done to give direct patient perspectives and give these statistics human faces.
Methods Participants were black women who had given birth in Nassau county within the past 5 years. We set up listening stations to interview these women and compared the transcripts of their statement for overlap in their experiences.
Results Both participants, Sharri (mother of one) and Te-Ana (mother of three), are black, middle-class women in their 30s with advanced degrees. Although they have had their own distinct and independent pregnancy, birthing, and post-partum experiences, there is notable overlap in the types of issues experienced. Sharri and Te-Ana both received inadequate communication regarding their care and it led to negative experiences. Sharri’s care team neglected to inform her that she could have a hypertensive crisis post partum. After taking her own blood pressure measurement at home, she received a high result and went to the hospital. During her account of this Sharri stated, “They admit me and they start running all these tests. They start giving me all this medicine and I’m like ‘What is this? What is that? Is this going to affect the breast milk?’ Like, I’m breastfeeding exclusively. ‘What's happening? What's going on?’ I didn't really get too many answers it was just basically like ‘We need to bring your blood pressure down before you have a seizure.’ So I ended up staying in the hospital for 24 hours under, being monitored…It took almost to like the 15th hour for me to find out what the issue was; like what was happening to me and what they were treating me for. I kept asking for a doctor and I was declined. The doctor would decline to see me. I ended up calling my OBGYN’s emergency line to tell them that I haven't seen a doctor I don't know what's happening. A doctor finally comes to see me and they tell me that I have preeclampsia” Sharri further mentioned, “During my pregnancy [preeclampsia] was an issue they kept talking about. ‘We don’t want you to have preeclampsia. We don’t want you to suffer from preeclampsia.’ Blah blah blah. No one ever mentioned that it could happen postpartum So once I gave birth I thought I was in the clear. I thought it was fine. … Everything will be back to normal. No.” Not only was Sharri denied information about her own condition during this health crisis, but she also did not receive any warning about it. As another example, during her third delivery, Te-Ana’s care team started a C-section protocol without telling her or her husband of their intensions and subsequently behaved inappropriately, including the use of unprofessional language, in response to her reaction of surprise and fear. TeAna recalled, “They rolled me down the hallway. They’re not telling my husband anything; they rushed me in. I get into the OR and the doctor's like yelling and screaming at me. The anesthesiologist is pushing me down. Like, pushing on my face as hard as he can [saying] ‘lay down, lay down’. And I’m like ‘I don't want to die’ [because] we had just had a family member die under anesthesia. I'm freaking out. All the doctors are ignoring me. I’m having, like, a full panic attack and the other anesthesiologist or the other gentleman who was in there was like, ‘We're not doing this Figure 7: Independent CRISPR knockout of CDK4 or CDK6 does not cause dropout in most breast cancer cell lines s**t again, we’re not ever doing this f*****g s**t again. Everybody is getting a fucking epidural’. studied. And like, because I hadn’t had an epidural I’m like freaking out. I’m thinking like, all these crazy thoughts: thinking about my husband, thinking about my children and then the doctor goes ‘Do you want your baby to die?’ …And I was screaming, crying and I was like, ‘no’. And then they were like, ‘Well, what do you want us to do?’ And I was like, ‘can somebody hold my hand?’. And the doctor who was pushing my face held my hand, I went to sleep And when I woke up I was groggy and I had a baby and I was in the recovery room.” The lack of communication from their respective healthcare teams lead to traumatic experiences for both Sharri and Te-Ana. Both negative experiences were likely preventable had the healthcare providers been more intentional about the information provided as well as when and how it could have been delivered.
Sharri and Te-Ana both had experiences during their pregnancy, delivery, and postpartum periods that lowered their quality of care. Notably, this led to both women realizing the critical role a third party advocate in addition to being well educated themselves. Sharri said: “I had a high risk pregnancy because I had preexisting hypertension. So I was monitored heavily through the maternal fetal medicine doctor and the OBGYN. That's when I decided that I wanted to have a doula to assist me through the process because there was a lot happening and I wanted to make sure that I had an advocate with me. I also have a masters in public health so I was aware of a lot of the issues pertaining to reproductive health and public health so I hired a doula.” Te-Ana said: “Find somebody who is well-versed in what happens in hospitals and someone who can advocate for you. Because even in the moments where I was strong and I was able to [advocate for myself], once things kind of went downhill my husband didn't know what to do… A doula would be able to step in and kind of be like ‘Te-Ana think for a second. We can have another doctor come in.’ …In that moment, when I sit back and think about everything that happened, there was very little that my husband [could] do …There was very little opposition. They could just kind of railroad us and that’s exactly what they did.” “You obviously are not going to know until you get into the situation But if you can hire a doula or if you can have someone who can advocate for you even a family member who is in the medical field or just knows something about the way things work because it goes beyond just you having an education.” Such an individual, a Doula for example, could play a role in bridging the gap of communication and information about procedures, risks, alternate options, etc. that could have made their experiences less traumatic.
Future Direction This project was intended to center the voices of black women when it comes to maternal/fetal morbidity and mortality. Taking the time to listen to black women and their stories can help change the direction of future care in order to prevent maternal/fetal mortality and the disparities experienced by black women and infants not only in Nassau County, but also in New York state and eventually the United States as a whole.
References Addressing Black Maternal Mortality Rates Starts with Listening to Black Women. (2020, March 25). Retrieved October 14, 2020, from https://www.nichq.org/insight/addressing-black-maternal-mortality-rates-starts-listening-black-women
Harrison, E., & Megibow, E. (2020, July 30). Three Ways COVID-19 is Further Jeopardizing Black Maternal Health. Retrieved October 12, 2020, from https://www.urban.org/urban-wire/three-ways-covid-19-further-jeopardizing-black-maternal-health Krisberg, K. (2019, August 01). Programs work from within to prevent black maternal deaths: Workers targeting root cause - Racism. Retrieved October 13, 2020, from https://thenationshealth.aphapublications.org/content/49/6/1.3-0
This Black Maternal Health Week, It's Time to Listen to Black Women. (2019, April 12). Retrieved October 12, 2020, from https://www.nationalpartnership.org/our-impact/news-room/press-statements/this-black-maternal-health-its-time-to-listento-black-women.html