The Woman Who Died in Los Toros: Learning to Ask a Better Question

A woman died in Los Toros in a pregnancy I never knew about until long after she was gone. Her death created the program I would spend years trying to understand.

In 2009, a Dominican woman died from pre-eclampsia that developed into HELLP syndrome. She bled out. The long chain of medical events that followed her death — the distance from rural Dominican Republic to the capital, the delays in care, the complications that came too fast — ended in a funeral and a community asking: how do we prevent this from happening again?

She was related to a community leader. The community leader said: enough. We need to look after our own.

A nurse practitioner who had come through the Los Toros Foundation the year prior had been present in some capacity when this happened. She had seen what the community was seeing. The Los Toros Foundation, responding to the community's determination, provided guidance. The community approached this work with clarity: they were not waiting for outsiders to fix their maternal mortality crisis. They were going to solve it themselves.

This is the story of that effort and the crisis of purpose it created for a young nursing student from Wisconsin who thought he understood what help meant.

Issue 025 told the story of how I came to be there — the parish mission trip in 2008, the family who took me in, the deacon who taught me that action without understanding is just performance. This essay is about what I found when I came back the second time, as a nursing student, and what I could not answer.

The Program

The prenatal program had been created. It was community-driven from the beginning. It was led by promotoras — community health workers who knew the women in Los Toros, who lived in Los Toros, who were trusted by the community in ways that an outside health worker could never be.

The program emerged from the dead woman's death. The community had said: this cannot happen again. We will screen pregnant women. We will identify risk. We will refer for care. We will make sure no other family loses a mother.

It was real work. The women in the program were invested. The promotoras were invested. The families were invested. We all felt like we were doing something that mattered.

And we were. The program saved lives. It identified risk. It referred women for higher-level care when they needed it. It prevented deaths.

But I soon learned something about maternal mortality that complicated my sense of success. Maternal death is rare. One maternal death is too many — demasiado. But statistically, in a community of a few thousand, maternal deaths are rare events. They happen, but they do not happen every month. They do not happen every year necessarily.

So what counted as success?

Was it the numbers? The number of women screened? The number of referrals made? The number of births without complication? Those numbers looked good. We could report them. We could show funders that we were making a difference.

But underneath that was a harder question. Were those numbers real? Were we actually preventing maternal death, or were we creating the appearance of prevention? Were we helping the community, or were we helping ourselves feel better about being the kind of people who help?

I was aware by then of the development world. I knew about NGOs across the globe. I knew about affluent countries sending people to help less affluent countries. I had read enough to know that good intentions do not equal good outcomes. I had read enough to be suspicious of my own motivations.

The community was suspicious too. We all wanted to demonstrate how great the program was. We all had an investment in showing that the work mattered. The community's investment was real — it was their mothers and sisters and daughters. But they also wanted to show funders and the Foundation that they were doing good work, that their trust in the Foundation had been warranted.

I wanted to show my research mentor that I was serious about nursing. I wanted to show myself that I had not made a mistake by transferring schools and choosing to work in a remote community in the Dominican Republic. I wanted to believe that the work mattered.

But did it?

The Framework

I was describing this doubt to Dr. Susan Bonis, my research mentor at the time. I was an undergraduate nursing student, but I was already thinking about research and impact. I was asking the hard questions because I needed to know whether I was on the right path.

Susan listened. And then she gave my confusion a name.

What I was describing, she said, was community-based participatory action research. CBPR. It was a methodology. It was a framework. It was a way of doing work in communities that put the community at the center, not the outsider.

CBPR meant that the community was not just the beneficiary of the program. The community was the researcher. The community was the decision-maker. The community was the person asking the questions and interpreting the answers.

That was different from what I thought I understood.

I had thought I was there to assess whether the program was working. I had thought the assessment was mine to make. But CBPR asked something different. CBPR asked: what does the community think about the program? What does the community understand about whether it is working? What does the community need to know?

Susan gave me language for what I was trying to figure out. She gave me a framework that made the doubt legitimate instead of making it seem like a failure of faith.

What the Framework Changed

Before I had CBPR language, I thought the question was: is the program working? Meaning: are we saving lives? Are we preventing maternal death?

After I had CBPR language, the question became more complex: according to whom is the program working? What do the women in the program think? What do the promotoras think? What do they understand about the program's impact? What would they want us to know about whether it matters?

The difference is not small. The first question assumes that I, the outsider, have the capacity to assess impact. The second question assumes that the community has the capacity and the right to define what impact means.

The program was community-driven from the beginning. But I did not have language for why that mattered until Susan Bonis gave me the framework. CBPR did not change the program. It gave me a way to understand why the program was structured the way it was structured — and why that structure was not incidental, but central to whether the work actually mattered.

That framework is what led me to Jennifer Foster. That framework is what redirected the trajectory of the work I would do for the next decade.

Sometimes what you need is not different work. What you need is a different way of understanding the work you are already doing.

About the author

Peter Schindler, MD, PhD is an Assistant Professor of Medicine and Associate Program Director of the Community Health Center Family Medicine Residency Program at the University of Nebraska Medical Center. He practices at Winnebago Comprehensive Health System, OneWorld Community Health Center, and Nebraska Medicine. He completed a Primary Care Research Fellowship at McGill University and holds a BSN from the University of Wisconsin-Oshkosh, an MS and PhD in nursing from Emory University's Laney Graduate School, a Diploma in Tropical Medicine from the Liverpool School of Tropical Medicine, and an MD from the Medical College of Wisconsin-Green Bay. He is board certified by the American Board of Family Medicine. The Interprofessional publishes new essays every week at the intersection of medicine, nursing, and the clinical knowledge that lives between them.

Disclaimer. The views in The Interprofessional are Peter Schindler's own and do not represent the official positions of the University of Nebraska Medical Center, Winnebago Comprehensive Health System, OneWorld Community Health Center, Nebraska Medicine, or any other affiliated institution.