Medical Mistrust as a public health problem

Trigger Warning: This article contains descriptions of traumatic childbirth.

This week’s letter is coming to you on a Friday because I spent yesterday tidying up my R & R (a “revise and resubmit,” very much the opposite of “rest and relaxation”), and then I spent the rest of the day fighting with the journal’s submission portals.

I wanted to preview with you some of the things coming out in my new article: “Why Would I go Back There”: Medical Mistrust and Maternal Mortality.

Over the next few weeks, I’ll be talking about the maternal mortality crisis, medical mistrust (today), the role of intimate partner violence and homicide in maternal mortality, the need for more data on racial disparities, and why we should rethink the maternity care workforce.

So, stay tuned.

Maternal Mortality Crisis

The US has the highest rate of maternal mortality in the industrialized world. According to the CDC and state maternal mortality commissions, 60-80% of this is preventable. It is 3-4 times worse (and sometimes more) for Black women. As we’ll explore in weeks to come, we’re not sure how bad it is for Hispanic/Latina and Asians because we keep data so badly that it’s difficult to tell.

What we know: people who give birth are dying preventable deaths, we have the information we need to make it better and we’re not doing that, and this is a problem that will not stop unless we stop it.

Two things we don’t talk about enough: individual stories and how medical mistrust is part of the problem.

Mistrust is a Problem

My coming article relies on 115 interviews of people who gave birth. I was originally asking about people’s rights, but in the “best state to give birth,” approximately 40% of my participants mentioned mistrust. That’s a lot in a sample where I never even asked about it.

I’ll be sharing what I learned and how we can better understand what is happening in childbirth if we, you know, ask the people who do it. As I share birth narratives it will be helpful if you think of these as ground-level political artifacts rather than the more common “why are you talking to moms, anyway, that’s not political science” attitude I came across.

The Near Miss: Astrid

According to NPR, “for every one who dies in childbirth, 70 come close.”  This is the story of my doula client, Astrid (name changed). Shortly after her second cesarean, Astrid started spiking a fever and her c-section scar was leaking greenish discharge. Her husband and I told her she needed to go back to the hospital. Her words to me: “Why would I go back there? They tried to kill me twice.”

Her husband found another hospital and took her there. She was put in a medically induced coma and given an emergency hysterectomy. The doctor said if she had waited another 24 hours, she would have died.

And she almost did wait because she was more afraid of returning to the first hospital than she was of the infection she knew she had.

Why?

Building Mistrust

I met Astrid as an interview participant. She learned I was a doula and reached out to me afterwards. We discussed my VBAC (vaginal birth after cesarean) journey and my work with VBAC seekers. She asked if I would be her birth doula, and despite focusing primarily on childbirth education and postpartum doula work, I agreed.

Some highlights from Astrid’s experience: she refused Pitocin but the nurse hooked it up anyway. I literally said, “Is that the Pitocin she just refused?” The nurse said yes and continued. Throughout the ordeal, Astrid asked them to turn off the Pitocin and a nurse said, “you have to wait until the contractions are how I like them.” She went from 3cm dilated to 7 without an epidural in about 3 hours.

I reminded the nurse that Pitocin contractions are demonstrably more painful, and she simply said they weren’t. I’ve had parents tell me they would rather set themselves on fire than ever do Pitocin contractions without an epidural again. One mother blacked out from the pain. Another said she “lost my mind” and considered jumping out the window.

A baby in the room next door and her mother coded. (Friends of mine, actually, and they are both fine.) At which point, the doctors came in and kicked me out of the room for two hours with no plan to let me back in.

When I did return, my client had an epidural and was on monitors she had said she did not want. Regardless of whether this was medically necessary, or whether it was the trauma response of a doctor who was working in an understaffed hospital (he was the only doctor working), we don’t know.

What we do know is that my client, who had bad back labor and was begging to be able to push squatting was told she couldn’t. As usual, she was flat on her back, pushing against gravity, likely pushing out an OP baby (making labor more painful because the head is pushing against the back of your pelvis…I’ve had two of these and they suck).

Before getting the epidural, a nurse told her, “you won’t feel anything, I’ve had to wake patients up to push, that’s how good these are.” When she had the epidural but could still feel pain, the same nurse said, “I don’t know who lied to you, but you’ll definitely feel something.”

The person who placed the epidural and called Astrid “princess” in a derogatory tone, assured her that she was either feeling “pressure not pain” or that she has “scoliosis.” A labor and delivery nurse privately told me later that this is something they often say rather than admitting the epidural isn’t working.

This happened to me, and I had to beg the doctor giving me the cesarean to believe me before he started. Fortunately, he did. Then he yelled at the anesthesiologist. Not so lucky were at least six other mothers in my study who felt the first incision of the cesarean because no one believed them that the epidurals didn’t work.

After all of this, Astrid had had enough. I reminded her that, having been in the same position, I also chose cesarean just to make the doctors leave me alone (although, Dr. Manning who did my cesarean was freaking amazing), and that there was no shame if that was the choice she wanted to make.

She did. And that’s how we got to the point where she was a near miss because one of her staples was causing her an infection. She believed firmly that she was being pushed through interventions because the doctors wanted them, that they cared more about getting her out of the way than about her, and that even if she did go back she would be forced into doing something she didn’t want to do.

Problems

Doctors and nurses reading this might come up with a litany of reasons for any of Astrid’s interventions and explain why her characterization of them is unfair, but the point is how she was treated shaped her characterization of them and that shaped her trust. She was given medication over her expressed refusal and when she asked them to stop, they told her no. This violation of her consent was part of a pathway to mistrust. It was no longer an interpersonal problem, to her it became an institutional one. Notice how her first discussion with me was about her birth being difficult. By the end of her second birth, she said “they tried to kill me twice.” The second experience was so bad on multiple levels that it took one bad experience and made it a structural problem.

Further, if no one explained the reasons for the medically necessary interventions, if she felt she didn’t have buy in and was being forced and overruled, and if she didn’t feel as though she was treated with respect and care then it doesn’t matter how “good” the decisions were. The lack of consent and the poor communication overall made her see the hospital as more dangerous than a postoperative infection.

Mistrust mattered because it was the mistrust that allowed her to rationalize her decision not to return.