A Mother’s Day Manifesto: Blood, Toil, Tears, and Sweat

A Mother’s Day Manifesto: Blood, Toil, Tears, and Sweat

39
SHARE

I’ve been writing about safe and effective maternity care for years and direct a coordinated national effort to transform maternity care, but this is a post where the political gets personal.

Last weekend, I attended the birthday party for the sweetest one year old. There were all of the typical rituals – hands and face covered in cake frosting, a pile of toys and new clothes, and a tuckered out babe falling asleep as the party wound down. But this birthday was bittersweet, because it also marks the anniversary of a crisis that very nearly cost the life of this child’s mother, my friend.

Nine days after giving birth, rather than gazing with equal parts sheer love and sheer exhaustion at her baby, my friend – we’ll call her  Near Miss Mom – was unconscious in an ICU on a ventilator, recovering from the emergency hysterectomy and blood transfusion that had saved her life.

I’d say Near Miss Mom had become a “statistic” but we keep no statistics on near miss maternal events, even though multiple agencies and organizations have sounded alarm bells about the rising rate of maternal mortality and have cautioned that for every maternal death, there are many more near misses. Legislation just introduced in the House by Representative Conyers would, among other provisions, establish steps toward a standard definition and routine counting and reporting of maternal near misses.

Because if we’re not counting near misses, we’re not systematically learning what our health care system could be doing to avert them, and for that matter the deaths that do occur. A  just-released report from a state-wide, multi-year investigation of maternal deaths in California found that 38% were likely to be preventable. Let’s take Near Miss Mom’s case, which almost certainly could have been averted far before she was so close to death.

Near Miss Mom almost died:

  • Because her postpartum discharge teaching didn’t include anything about how to recognize and get help for postpartum hemorrhage – even though she had three major risk factors for hemorrhage
  • Because the hospital had no protocol to systematically deal with late postpartum hemorrhage – even though the largest maternal quality collaborative in the country has a freely available toolkit for that
  • Because no one was measuring her blood loss while she sat in the ER on two different occasions for hours at a time – even though she was sitting in a pool of blood so deep it was pouring over the tops of her thighs and the sheets had to be changed more than once
  • Because she had to “wait in line” for the MRI and then wait some more for someone to interpret it – even though there are less sophisticated but equally effective methods to rule in or out the rare defect they were concerned about.
  • Because no one in the ER communicated the severity of her condition to the obstetrician who was “overseeing” her care – even though the OB was in house and could have visited her herself. When she finally reached Near Miss Mom’s bedside, it didn’t take her long to call a Code Red and assemble the team for the emergency hysterectomy.

Patient safety advocates and experts will see some familiar themes in this list – lack of standards and accountability, poor communication, system failures – and although  maternity care is the most common reason for hospitalization, how often do we think of hospital safety as it pertains to maternal health? My best guess is that the disconnect arises from the fact that childbearing women are usually healthy and therefore (physically at least) resilient. Unlike patients who enter the hospital sick or injured, it can take many errors and system failures to actually kill a mother. Yet this means the problems can get so immense and intractable before we see the accumulation of harm. That adds up to a lot of women coping with preventable injury, illness, and emotional trauma at the same time that they should be experiencing the joys and taking on the challenges of new motherhood.

I recently asked Near Miss Mom recently what it felt like to be bleeding to death. Her response wasn’t what I expected, but knowing what I know of the fractured and fragmented system, it’s not surprising.

“Honestly, I don’t know. I was so overwhelmed with the lack of care in the ER and by my OB practice that I wasn’t really thinking about bleeding to death. But why would I? No one thinks about that as a possibility. I mean, I assume no one does. Why would we when we have an expectation of proper care? It wasn’t until I was admitted and in my room, and the OB was asking why the blood was taking so long that I realized I was potentially screwed. My first thoughts were my daughter and husband and would I be there for them. Right after that I went into shock so not much time to truly think about actually dying. I mean, dying? Really? I knew I was bleeding all day but I never thought they would let me reach the point of near death.”

Since the moment Near Miss Mom began her recovery, her most fervent hope has been to help make sure this doesn’t happen to any one else ever again. Unfortunately, when we met with her OB team after the fact, they declined her offer to be involved in quality improvement efforts because those matters are confidential. They also told her that she would need to meet separately with the ER team because they run their own quality improvement programs and the OB Department can’t influence what the ER does (if that’s not silo thinking, I don’t know what is). Then they asked if either of the companions she brought with her for support and advocacy were lawyers and, just for good measure, billed her insurance company for the time spent meeting.

Near Miss Mom has been trying for a year to use her story to spark desperately needed improvements in maternity care, but has encountered road blocks at every turn. Even writing down her story has been too much at times, as she deals with still incomplete medical records, post traumatic distress triggers, and the time and energy constraints all new mothers face.

But she is ready to make change and as her first public acts of activism, Near Miss Mom will join a delegation to get lawmakers to sponsor the Maternal Health Accountability Act and she will use her story to ask others to donate blood in the month of May to honor Mother’s Day. Near Miss Mom writes,

“Without the people who donated blood, I would not be here. It wasn’t only the surgery that saved my life. It was the blood. Eleven strangers saved my life. And saved my baby’s mother.”

I will be at Near Miss Mom’s side for both of these courageous acts of activism. We hope others will do the same in their own communities. Will you join us?

Amy Romano, MSN, CNM, is the Project Director of the Transforming Maternity Care Partnership coordinated by Childbirth Connection.

Leave a Reply

39 Comments on "A Mother’s Day Manifesto: Blood, Toil, Tears, and Sweat"


Guest
steve
May 4, 2011

Vital signs and a few quick return labs should have been enough to determine the severity of the bleed. An experienced clinical just looking at a patient is often enough to get things rolling. Your protocol may help, but this sounds mostly like an ER miss.

Steve

Guest
Greta
May 4, 2011

Thanks, Amy. Great article!!!

Guest
L.
May 4, 2011

So – because there is no way for the patient to get what she really wants – systemic change to increase safety for all patients – she has to sue, right? When you doctors talk about the need for personal responsibility and accountability – do you include yourselves in that mandate? Or, is that just something for patients?

Guest
NMM
May 4, 2011

I was under my OB’s care as soon as I entered the ER as the OB practice I went to is the hospital’s. So ER miss? Yes. But OB practice miss? YES.

During my first ER visit, the head ER doc said “If it were up to me, I’d release you. You’re just cleaning out. But I have to defer to your OB because you’re under their care.”

Guest
Tim
May 4, 2011

“I was under my OB’s care as soon as I entered the ER…”

No, you weren’t. You might argue that you should have been, or that some future legislation might make it true, or you might litigate it into existence, but under existing conditions in American health law you were not.

Guest
NMM
May 4, 2011

When I asked who’s care I was under during my ER visits, my OB said “Me.” I was quite surprised by this as I thought I was under ER care and saw umpteen people but never my OB.

Health law be what it may, this is all I have to go on.

Guest
RN
May 6, 2011

I would argue that you were under the OB’s care on paper only. If the OB was not being properly updated by the ER nurses, and didn’t bother to come to the ER and actually provide any type of assessment or care, then you weren’t really under his care. You were under the care of ER doctors who probably had far too many patients to give good care to any of them, and nurses who routinely see “vaginal bleeding” that turns out to be a boring old period, and who are overworked and quite frankly usually very unfamiliar with anything pertaining to pregnancy including identifying normal or abnormal postpartum bleeding. Your OB may have been in charge on paper but if he didn’t bother to come and actually do any work then someone else was forced to run the show. Or nobody was, because the OB assumed that the ER docs were taking care of you, and the ER docs understood the OB to be taking care of you, and you fell through the cracks.

I’m glad you’re okay. I’m sorry this happened to you.

Guest
Heather B
May 4, 2011

Tim, whether or not she actually was under her OB’s care is less of an issue than the ER doc informed her that she was. Don’t you think that’s a concern in and of itself? Did he lie to her? Or did he truly believe it? If he was lying, was that to avoid possible future litigation? Have we, with lawyers, blackmailed our doctors into providing inferior health care for our mothers? Mothers can’t be expected to have an intimate knowledge of US health law. Or at least they SHOULDN’T require an intimate knowledge of US health law to receive good care. And anyway, maybe it’s a good thing the ER doc thought (or pretended) that she was under her OB’s care, because if that doc had sent her home, she wouldn’t be a near miss mom, she’d probably be dead.

Rather than condemn the woman who’s hospital experience was truly traumatic (that’s called blaming the victim, by the way) when she expresses a desire to improve the system that nearly failed her, maybe you should turn to the people who ACTUALLY did something wrong. By the way, I don’t know if you’ve ever experienced true trauma in your life, but it’s indescribably difficult to talk about, or even think about. Near Miss Mom is trying to improve things for other women at a great personal sacrifice that you clearly do not understand.

Those of us who HAVE experienced trauma at the hands of the US medical establishment stand with Near Miss Mom.

Guest
Tim
May 4, 2011

Heather,
Good questions, all. Yes, it is a concern that the ER doc told her she was “under the care” of the OB doc; I’m sure he (he?) believed it and in fact those words mean something different to him than they did and do to her. She was under the OB’s care for the pregnancy; she was under the ER doc’s care for the bleeding.

I agree mothers should not need to understand health law to receive good care — but that’s not actually our subject now. Our subject now is whether activists need to understand the American system. If NMM just wants to tell us her story, she’s done that; but she seems to want to do more than that.

“Have we, with lawyers, blackmailed our doctors into…inferior care…?”

Well, “we” have certainly produced an environment where the expected behavior is “silo thinking”. I’m not saying it is right, just pointing out that it should be expected by anyone who understands human incentives. I don’t like the way you put it, because that would exonerate the doctors and blame the lawyers. The lawyers are wrong, the culture is wrong, many individual doctors are wrong, and all that is because the incentives are wrong. The people in the system (except for shining exceptions) will never act differently in response to…appeals to act differently.

I didn’t intend to condemn NMM, but to point out to her that there is a part of her own story she does not understand. Her effort to “improve things for other women at a great personal sacrifice” — which I applaud, though I understand it as little as you suggest — could only be helped by understanding the system she is trying to change.

Guest
May 4, 2011

I’ll reiterate one line from the post: “They also told her that she would need to meet separately with the ER team because they run their own quality improvement programs and the OB Department can’t influence what the ER does (***if that’s not silo thinking, I don’t know what is***)”

Whether it was the ER doctors or the OBs who were overseeing her care, they were both involved from the get-go and should have been functioning as a reliable team. Furthermore, the patient should know who is the head of that team so she can summon them to her bedside if the situation is urgent.

My experience as a clinician has been that the ERs don’t want to deal with anything OB-related but the L&D floor doesn’t want their rooms filled with women having prenatal or postpartum complications that could be dealt with in an ER. Meanwhile, 1 in 20 new moms will present to an ER within 6 weeks of giving birth, according to a 2010 study from the HCA network of hospitals. That doesn’t include the many prenatal ER visits. Coordination among hospital units was called out as a major area of focus in the just-released California report of maternal deaths, 26% of which occurred in emergency departments.

Different EDs will arrange care differently depending on local circumstances, size of the facility, etc., but there should be a clear chain of communication and protocols to deal with common obstetric complications, beginning with hemorrhage, which is the most common emergent complication that ERs see. This ER didn’t even have the basic drugs for PPH immediately available and had to order them from the pharmacy. Not that anyone ordered that drug for Near Miss Mom until hours into her second ER visit. While they were waiting for the pharmacy to deliver it, she went into shock.

Guest
May 4, 2011

Thank you Heather B.!

Guest
Sktaz
May 4, 2011

Where is the outrage from physicians? Where are all the docs who decry the litigious state of medicine who believe we need a better way? More than one doctor failed in his/her duty to this patient it would seem.

Is this a situation of “everyone makes mistakes. oh, well – sucks to be you?” How many NMM’s or even dead moms are acceptable as the cost of doing business? I assume you have a number in mind. Why not share it?

The silence on this post from the physicians is very telling. Hard to push this one off as the fault of the patient? Maybe she was obese. That would let you all off the hook, right?

Guest
steve
May 4, 2011

The siloing is a major concern. When we have a critical event everyone from every specialty is required, not asked, to attend. Post-partum hemorrhage, indeed hemorrhage in general, occurs often enough that I am surprised they did not have a protocol for this. Was this a trauma center?

Steve

Guest
NMM
May 4, 2011

No, not a trauma center. I’m amazed there was no protocol for PPH. After the event, I did ask if there was one and did not receive an answer.

Guest
May 4, 2011

This story really touched me. I too started bleeding more then was normal at 8 days post c.s. delivery. And I also got terrible service at the hospital. I am so very grateful that the bleeding stopped on it’s own (probable retained tissue). Being at the hospital, where I thought I was going to feel safe, was terrifying when met with no care and even hostility. (I think the head nurse was angry because I had called 911 and then driven myself and the 911 operator wanted the nurse to confirm I had arrived. Not sure why this pissed her off, but she referred to it.)
So glad near miss mom is alive. Glad to see so many rallying to improve maternal health. It needs it.

Guest
May 4, 2011

Unfortunately, this is a classic of the genre, not of maternity care disasters, but of health system failures.

The very fact that some readers on here aren’t even sure who was at fault – the L&D unit or the ER – speaks volumes about how lost we are in complexity and ambiguity, and how broken the entire system really is. The obvious legal answer is the ER: in a hospital, possession of the patient is 9/10th of the law, hence the importance of “turfing”; but the real answer is the entire maternity care non-system, in this case, an L&D that turfs post partum patients out the door and into the abyss. No follow-up, no data feedback loops, no aftercare, nothing. Why not? Because who’s paying for those services? No one. (Except that all of us actually pay, indirectly, when these horror stories bounce all the way back into the ICU.)

While we are all supposedly racing to “wire” our health care system with EMRs, data exchange, and ACOs, fee-for-service medicine continues to rule the day in America, and one of the nasty, logical by-products of fee-for-service has always been and always will be system fragmentation, workflow breakdowns, and missed hand-offs. And fragmentation only gets worse over time, not better, as we exert every greater economic pressure on providers and fail to incentivize clinical reforms. Small wonder the public health suffers, and our maternal and newborn mortality rates are going backwards compared to the rest of the civilized world. Shame on us for that NMM almost bleeding to death before our eyes.

Beautiful piece of writing, Amy, about a very ugly situation.

Guest
May 4, 2011

I can’t believe they didn’t take it as a red flag when she was bleeding profusely on her bed, that you know, it might be something fatal. We really do gamble a lot when we admit ourselves to the care of another establishment/human.

Guest
Nicholas fogelson
May 4, 2011

This is a case of bad emergency medicine practice, perhaps contributed to by a culture of docs and staff not sure who is in charge. I wouldn’t be surprised if there was an OB and an ED doc that both thought the other was responsible for the patient. The answer, however, is clearly the ED doc. The ED doc is the one with their name on the chart, and until the OB arrives and assumes care, the patient is theirs. Bases on what was told, it sounds like the ED underestimated the severity of the problem and thus failed to communicate that to the OB.

Gawande has argued that checklists are helpful in nearly every medical situation. A PPH checklist might be helpful, especially in the ED where the docs are less familiar with what to do.

Guest
Guesty McGuesterson
May 5, 2011

“This is a case of bad emergency medicine practice, perhaps contributed to by a culture of docs and staff not sure who is in charge. I wouldn’t be surprised if there was an OB and an ED doc that both thought the other was responsible for the patient.”

and this makes this okay because……..

ummm does anyone there know how to draw up a syringe of methergine? Maybe? I think I might be able to I have to give my goats injections on a regular basis, I’d know whose responsibility it was.

Guest
May 5, 2011

This was NOT a near miss maternity event and it is unfortunate that Ms. Romano has chosen to misrepresent it as such.

This is an example of a patient presenting to the emergency room with a rare complication who should have had an immediate specialist consult, but did not. Late postpartum hemorrhage is typically due to sub-involution of the placental bed. Most physicians, like this ED doc, have never seen a case and therefore may fail to recognize it.

This was a mistake on the part of one physician (failure to obtain immediate specialist consultation) and not a systemic failure. If an ED doc failed to recognize a complaint of jaw stiffness and drooling as tetanus, we would not conclude that it was a “neurology near miss” and indict the neurology care “system.”

That’s not to say that there isn’t room for improvement in maternity care, but it is deeply cynical to use the case of an ED doc failing to diagnose a rare postpartum complication as a failure of maternity care and deeply cynical to use it as a Mother’s Day parable.