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Ask Serena Williams, leading obstetricians, and Janae Sharp about the care problems that expecting mothers face.
On Saturday, Serena Williams became the first mother to make it to the Wimbledon tennis finals in 38 years. She was the runner-up. Her daughter was only 10 months old, and she used her opportunity to send mothers a message of hope, a call to improve maternal health.
Williams is arguably the best tennis player in history, but many fans are unaware that she came very close to dying in childbirth from a blood clot less than a year ago. Williams takes clotting medication and has a history of blood clots. Shortly after she gave birth to a healthy baby girl, she started to feel short of breath. To her dismay, she found that despite these warning signs, getting care for a life-threatening clot was not easy. The first response of the medical team was to tell her to lie down. She described her experience in Vogue magazine this past February:
“[Williams] walked out of the hospital room so her mother wouldn’t worry and told the nearest nurse, between gasps, that she needed a CT scan with contrast and IV heparin [a blood thinner] right away. The nurse thought her pain medicine might be making her confused. But Serena insisted, and soon enough a doctor was performing an ultrasound of her legs. “I was like, a Doppler? I told you, I need a CT scan and a heparin drip,” she remembers telling the team. The ultrasound revealed nothing, so they sent her for the CT, and sure enough, several small blood clots had settled in her lungs. Minutes later she was on the drip. “I was like, listen to Dr. Williams!”
"I was really happy to get this far. For all the moms out there, I was playing for you today"
— Wimbledon (@Wimbledon) July 14, 2018
One of the only reasons Williams was able to play tennis in the finals at Wimbledon is that the governing committee decided to look at her total ability and allow for the birth of her daughter in her ranking. In a ruling that is significant for maternal health and athletes, the the Wimbledon committee decided women should not lose their ranking due to pregnancy, and Williams had retained a high enough ranking to play.
We almost lost one of the best athletes in the world. Her childbirth could have ended in disaster, when despite a known history of blood clots and Williams’ own awareness of her predicament, that information was not visible in her health record. Why didn’t the nurse caring for Williams have information about her complete health history and pre-existing condition? Known medical history should affect care, and this omission almost killed her. Advocating for her own care and knowing her health history saved her life.
According to a ProPublica report on maternal health, the United States has the highest mortality rates in the developed world. And maternal mortality for black mothers is worse than other groups. To even begin to solve these problems, we need better records and more advocates demanding greater care.
I spoke to Leah Torres, MD, an influential OB-GYN, about how healthcare records influence physicians at the point of care. She said it was a significant problem, that the U.S. has worse health outcomes for mothers than other countries, and it is very difficult to get information about health history from our records.
Inaccurate records how? Most of the time the inaccuracy is unavailability— you’d be surprised how many people don’t remember which due date was the official one, or what their diabetes screen result was (normal vs abnormal), etc
— Leah Torres, MD (@LeahNTorres) July 12, 2018
The main issue with records is that there is a lack of information. Pregnant women travel, including pregnant women with existing conditions that change how care should be delivered. Torres mentioned that one of the biggest obstacles is whether a patient can remember their history accurately. But even with a patient who can do so, emergencies are part of obstetric care. Women with extensive health histories might not have the time in an emergency situation to share such details with their physician.
“I’ve had patients that have had such a complicated history that you have to sit down with them for a half hour to go through it,” says Torres. “To have to do that every time they go in with every provider would be impossible. You never know what you are getting into. If someone is bleeding out and you don’t know that they have von Willebrand’s disease, and you have to do surgery on them, you will give them a medication and you are going to kill them.”
Treating a patient in emergency care without health history can mean a provider follows the best care path but still may inadvertently kill their patient.
Even in cases where mothers don’t die, a lack of records creates risk for physicians. I asked Torres for an example of a situation where inadequate records affect care, and she envisioned the following common scenario:
“I’m the doc on call at labor and delivery, and an ambulance brings in a 32-week mother who was in a car accident, and she banged her head against the steering wheel. She’s unconscious and coming to. No one is with her.
“I can’t even ask her the due date.
“She looks about 32 weeks—now I’ve got to measure her belly. Am I measuring a normal baby, growth restriction, or a baby that is normal size?
“I do an ultrasound, so that could be two weeks off in either direction. I can gather records manually but without early records that say her due date is based on an early ultrasound. It gets really dangerous to not have records. It’s dangerous to not have facts.”
A lack of records puts unnecessary stress on providers. The responsibility of the health record is to facilitate great patient care. Physicians know they can’t deliver the best care possible, and the care they can deliver costs a lot, without these tools. When we don’t have adequate information about a pregnant patient, physicians often repeat costly testing, Torres noted. These tests have time delays and are part of our large healthcare spending waste.
“Because I don’t know any of this information, I’m repeating tests and subjecting the patient to more testing and costing money to the healthcare system, most likely needlessly,” Torres said. “Healthcare cost goes up, patient risk goes up, because I have to stick her with another needle.”
Providers should be given the information they need to deliver great care, at a greater value.
We are failing mothers and healthcare providers with our inadequate healthcare records. One of the failures comes from women going into labor while traveling or going to a different hospital than the one where their physicians work. Other women, meanwhile, don’t have the luxury of missing work for regular prenatal care.
A certified nurse midwife (CNM) on Twitter shared her experience caring for a patient with a history of rheumatic fever and mitral valve disease. The patient wasn’t sure what her due date was. The midwife told me, “It happens all the time, especially in my urban area with multiple large health systems.”
I’m a CNM and just recently had a great example. This patient had a h/o rheumatic fever and mitral valve disease that was nowhere in any records we had and we didn’t find out about it until the postpartum period. Long story how she ended up in our care 1/
— B. Happy (@breesus319) July 12, 2018
I have personally experienced this lack of access to health records—a problem between two units that were literally in the same building.
Pre-existing conditions and past pregnancies influence care and precaution in prenatal care. That knowledge should be stored in easily accessible records. I am especially aware of this because I am pregnant. While I couldn’t remember all the details of every visit, I am going to add a note here, to demonstrate the impact of inadequate healthcare on even a person with a minimal pre-existing condition, who is an informed and confident advocate for her own care: me. I am expecting a baby on Nov. 11. While I currently live in Utah, my other pregnancies were in Pennsylvania, and I wish there were a way to track the differences in my tests and the baby’s health between my previous pregnancies and this one.
Today was great I spoke at #uxfest
Last night I saw @Mahek_MD that was like home.
Ps we are having a mini Mahek in November. Another boy I'm in trouble. pic.twitter.com/PiwEILbqeL
— janae sharp (@CoherenceMed) June 5, 2018
Overall, I’m very glad this baby doesn’t seem to want to kick me right in the spine like my second child. I am more than halfway through this pregnancy, and I think it is safe to say I am a miserable pregnant human. My mother says I’m a bit too grouchy to talk to—and she is my mother. I have three children. I work. I am tired.
And my records, even for this pregnancy, are strangely disconnected. If maternal health in the U.S. is going to improve, then we will have to admit we know nothing about pregnancy, and our separated data are only compounding the issue. At the beginning of my pregnancy, after a home test, I went to my primary care doctor to have blood work done. She sent me to the lab next door. Those tests took a few days to come back, after a positive urine test.
Then I needed to find an obstetrician who took my health insurance, which was even more complicated because I switched this year.
I’ve had four pregnancies and spotting in the first few months for every pregnancy, so I usually get an ultrasound pretty early. My first ultrasound had the heartbeat. I was still in shock. Some days I still am. I checked the levels of my second blood test. Neither blood test is in the patient record with my obstetrician. The start of every pregnancy for me is strange, and when I had the same obstetrician I didn’t end up duplicating tests. That information wasn’t there anymore, so I ended up with the most conservative plan. Maybe it’s always safe to order more tests, but I hate telling the story over and over again.
I got sick. I went to my primary care doctor. I got antibiotics. That visit isn’t in my OB-GYN record.
I visited my obstetrician for my first checkup. They did blood work. The lab is in the same building as the doctor, just downstairs, where a very friendly woman has taken my blood. I also did blood work in the office. The in-office blood work is in my record, but the downstairs blood work shows up as a sort of widget with a report that it has been “seen.”
I got sick again. My primary care doctor told me to have less stress. I magically released my existential stress into the universe, as I took prednisone and in-office breathing treatments and antibiotics. I was extra angry that week. That isn’t in my health record.
I haven’t gained any weight, and I’m 22.5 weeks pregnant. I actually lost some weight. People congratulate me on how amazing it is that I’m not an Oompa Loompa rolling about with baby No. 4. In all fairness, I feel like an Oompa Loompa, and I think all my muscle sort of melted. I know what is coming in the third trimester: Have no fear, I will be puffy.
Let me tell you about what pregnancy weight loss is like.
You will throw up. You will hate the smell of meat. You will throw up sometimes at the smell of meat. Humans also smell bad. Tomato soup is not an acceptable offering on the altar of food. I’ve had IV hydration and nutrients. Those help for a bit. Those visits were to the hospital and are not in my healthcare record. After week 17, they tell you to start taking medication that they offered in week 12. It will make you sick. The prescriptions from my primary care physician are not in my health record. I can’t see the anti-nausea medication in my portal either. There is still an order for an in-office urine test from two visits ago that did not get recorded that shows up under my patient list of things to do.
You will be angry at the dad. You will want him to fix what has happened. That is not in my health record. The doctor told me to go to a counselor to get help with stress. I am still waiting on one that my health insurance will pay for. That is not in my record.
I got the flu. According to the modified pain scale, the flu while pregnant was roughly equivalent to praying for a mercy killing. I went to my primary care doctor. She suggested I take time off work and see if I can get more help with my kids. She looked at me and said, “You are going to be sick this entire pregnancy because you are raising three kids and working and stressed.” That advice isn’t in the record for my obstetrician.
Now comes genetic testing! My obstetrician referred me to an office downstairs from hers. The records are separate. They ask me about my due date, and we learn that is is much earlier, which I knew from an earlier ultrasound. The change was not in my health record.
I wait a week. I am having a boy. He is healthy. The genetic test is in not my record. My physician manually adds the results and looks over my history. Manually reviewing the records seems time-consuming.
I travel to Boston for work. Right before I get on the plane to come home, I feel sick—dizzy and cramping. I get on the plane anyway because I don’t want to go to an out-of-town doctor who doesn’t take my health insurance. It’s time to be sick again. This time my friend comes to help, and I really do stop working for a bit, because I have low blood pressure and am passing out often. The first day she comes, she tells me I don’t make a lot of sense. She calls my doctor, and I go in and tell her I feel fine. The doctor and nurse go over my food. And water. Order more testing. I have low blood pressure, which gets bad in the second trimester. My obstetrician asks if I had a life change or increase in stress. I told her I don’t think so.
There is nothing in my portal recording the recommendation that I track my food or go to nutrition counseling or the prescriptions I have.
Downstairs for blood work. Not in my healthcare record. I do not have gestational diabetes. The results of these tests are in my record. I see the ranges before the doctor calls me. They look mostly normal, except some results that Google says indicate that I’m stressed and not eating enough. Or I’m dying of liver disease. One of the levels has a slightly higher instance of stillbirth or early delivery, and I have no idea if it only means something bad if other levels look a certain range. My mother and grandmother had stillbirths. That is not in my record.
Fighting off possible imaginary liver disease is rough. I cry even though I am 99 percent sure nothing was wrong. Low blood pressure, very specific eating, and a lot of water. That does not stop people who are not my doctor from telling me to drink more water.
The next day, after misreading my test results from my healthcare portal, the nurse calls and tells me I don’t need to worry.
The official ultrasound was last week, in the same office as the genetic testing but with a new team. The baby is dancing until the very end, so they finally get his heart measurements. Everything looks great. I wish there were a way to see the pictures in my healthcare record. He has the most perfect little foot. My record doesn’t have those results.
A couple of weeks ago, I got hives. I didn’t visit the doctor. Not in my health record. I think I left out a few ultrasounds or some physician visits. I am relatively healthy other than constant nausea and some cramping and wondering why other pregnant ladies are so much “better” at this.
My vision is a bit blurry in my left eye. I have a headache. I am visiting my provider this week so I didn’t want to call for an early appointment to discuss headaches. I don’t know if I should tell them about my vision. The vision changes aren’t in my health record. I think they are just tied to a headache, so I haven’t called. How many potential problems don’t reach the health records because pregnant women don’t think they are noteworthy?
Telling a pregnant woman to reduce her stress feels like telling me to fly. I am 22 weeks pregnant with my fourth baby. Overall multiple records say I’m perfectly miserable, which is within the normal range for pregnancy. I use my patient portal. It is completely useless to schedule actual appointments with my obstetrician—the appointment types aren’t set up to match what I am going in for. Many of the conditions that are relevant to women’s health aren’t an option for ICD-10 codes, which physicians use to record what they do. Dr. Leah Torres mentioned that many of the things she does every day to provide care aren’t well described by existing codes. I wish I could see all the records together.
My pregnancy is, all things considered, relatively easy. It is also an endless menagerie of horrors. Pre-existing conditions aren’t part of my health record. I’ve had three relatively uncomplicated births, with one that was super-fast. My main concern is whether I will have the baby at home. Given the fragmented records, I’m glad to be healthy. I am confident I understand what will happen in childbirth. What if I were not healthy, or worse yet, didn’t know I wasn’t healthy? What if I weren’t a confident self-advocate and navigator of the health care system?
Healthy pregnancies with a lack of medical history put unnecessary stress on providers and risk patient lives. What about unhealthy pregnancies? Statistics on maternal mortality and health in the U.S. are not encouraging, maternal healthcare is not improving, and reports on inadequate care for black mothers are heartbreaking. Do not read about what raises your risk of death. How are we failing mothers?
When a pregnant woman has a pre-existing condition, that should always be available to physicians at the point of care. This would mean the nurse who helped with the delivery for Serena Williams would know to check for clotting. The would mean providers like Torres would know what care a patient needs. This would mean I would have all my records every time I went to a provider in my community. That would mean health records were complete at every point of care.
We need better records. Only through a more organized, streamlined system can we prevent needless infant and maternal mortality and allow the great chance for each mom to have a healthy baby.
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