Piecing together medical records revealed missed chances to intervene during scary delivery
Health editor Joy Victory had a frightening experience when she began to show signs of preeclampsia during her pregnancy and delivery, an experience that prompted many questions that were not immediately answerable. So she asked for her medical records to try to piece together the trail of what happened to her. I wrote about her experience last week. Now here’s how she did the hard work of reconstructing events.
Q: At some point after your delivery, you decided to ask for all your medical records. What prompted you to do that?
A: I was desperate to make sense of what happened to me. I ordered my complete chart, which in and of itself was a major task. It required many separate requests for a 1) prenatal chart 2) triage chart 3) hospital chart 4) my daughter's NICU chart and 5) postpartum care chart.
Q: Did you get these all for free?
A: I spent about $400 to get them all. This was in New York City at a major hospital. All paper copies, and they charged 75 cents a page. Getting them electronically would have required the kind of endless patience that I didn't have with a 3-month-old baby at home, so I forked over the cash. I also was traumatized and didn’t want to interact with anyone who worked at a hospital. I just wanted the records.
Q: What did you do once you got the records?
A: I had to spend an enormous amount of time putting it in chronological order. For example, it would take a master puzzle-solver to figure out from my chart that I was transferred to seven different rooms during my stay! But you can imagine how being in that many rooms affected my quality of care. Various hospital staff were not able to find me to deliver my meals (so I went hungry), or to get me medication in a timely way (so I went unmedicated — with severe preeclampsia). But you would never, ever see that stuff in the chart.
Q: So If there were these big holes in your medical record, did they just remain mysteries? Was there anything else you could do?
A: So I had to come to accept that the hospital wasn’t looking at me as a whole person, nor as a mother-baby unit — just a combination of vital signs, lab work, symptoms, and medical and nursing orders. There wasn’t going to be a narrative. No one but me and my husband would be able to piece it together: the panicked texts and emails I sent at the time, the conversations I had with friends and family, and my charts. I realized medical forensic experts have a lot stacked against them to get to root causes of why women are dying from causes related to pregnancy and childbirth. The primary patient can’t speak up. That’s why I think the detailed medical narratives from patient survivors are so important — from people like me who went through it and survived.
Q: Obviously, gaps like the ones you experience must be happening elsewhere. What kind of efforts are there to make sense of the kinds of things that go wrong when women go into a hospital to deliver a child?
A: The work of California Maternal Quality Care Collaborative and its efforts to do full-blown maternal mortality reviews has been critical to filling in these gaps. They had to go beyond the records to figure out the errors. They found, for example, via more extensive research, that some women who died of eclampsia weren't getting their emergency medication in a prompt manner. There was too much chaos in the process of 1) having a doctor on hand to recognize the need to give the order for medication, 2) the nurse inputing the order, 3) the pharmacy to receiving and filling the order, 4) someone bringing the medication back to labor and delivery and then 5) someone administering the medication. If any of those steps don’t happen quickly enough — the hospital is too busy, it’s a holiday, it’s at night, it’s a weekend, it’s a shift change — that process can go off the rails fast. So CMQCC and their partners worked out solutions. For example, they recommend that hospitals make sure emergency medication like magnesium sulfate is located right on the labor and delivery floor in a toolkit, versus needing the hospital pharmacy to fill it, for example. They put together very detailed instructions on how to handle a maternal hypertensive emergency inside the toolkit, too. By reading those toolkits, I also was able to see how my care deviated from the standard of care.
Q: What were some of the other big discoveries you made when reviewing your own record?
A: I had a panic attack in the hospital — the first of my life. Having what is known as an “impending sense of doom” is a typical but scary symptom of having severe, untreated preeclampsia (and also a side effect of one of the medications I was on), but in my chart, it’s just written as a separate thing — that I had “anxiety.” So you see my mental symptoms being dismissed as anxiety and nobody making the connection to the physical state I was in, which was horrific. Again, it’s all about me just being viewed as a collection of lab results, doctor’s orders and vital signs — not a person.
Q: Knowing what you know now, what are your three key pieces of advice to journalists trying to figure out what really happened to a patient in a health care setting?
A: First, definitely work with your source to order the charts going back as far as you can. For example, for a maternal death, order the prenatal charts. But keep in mind that the charts can be wrong, both subjectively and objectively. And because the charts are the only official record of what happened, health care providers take great caution in putting anything in there that could incriminate them. Do not trust them anymore than you would trust any other source.
Second, doctors may never see the patients they care for. In my case, once my midwife realized I was very sick, my care was transferred from my midwife to the chief of high-risk obstetrics. But I never once saw him or spoke to him. My midwife would communicate my health state to him over the phone, and he’d make the final call on what to do with me. His name appears very briefly in my chart, but he had enormous control over what was happening to me.
Lastly, there are many things going on in a hospital that are important to a patient’s outcome but never appear in the chart. For example, I was constantly encouraged to use a breast pump since my daughter was in the NICU. Every two hours around the clock I was pumping. By day four in the never-restful hospital, combined with the severe preeclampsia and having so recently given birth, it’s hard to articulate the extent of the sleep deprivation I experienced and how that affected both my physical and mental health. It was bad, and it was perhaps the most traumatic and dehumanizing experience of all of it: That no one cared if I slept or not.
As I say now, the hospital saved me and also nearly killed me. To me, it is no wonder postpartum anxiety, depression and psychosis is on the rise. It’s not a coincidence that maternal mortality is so bad, too. Women are getting unsafe care compared to decades ago, and we don’t just immediately bounce back once we’re home. In my case, I funneled my anger into writing, and it saved me.
--
Related Posts
How medical records helped one journalist find out what went wrong during her daughter’s birth