Why It Matters
"I felt a responsibility to admit the ways in which my own system had in many ways failed me because, if it was failing me, then it was bound to be failing others."
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What Happens When Health Care Providers Fail One of Their Own?

By IHI Team | Friday, September 8, 2017

Rana Awdish, MD, is a critical care physician at Henry Ford Hospital in Detroit. In a New England Journal of Medicine article that got over 100,000 page views, she candidly described how her own near-death experience changed how she thinks about medicine. IHI recently spoke with her about the power of storytelling, and how empathy may prevent burnout. Dr. Awdish was one of the keynote speakers at the 2017 IHI National Forum.

What made you decide to describe your experience as a patient publicly? Was it a difficult decision to make?

I realized that as a physician in my own institution I was, at least in theory, an empowered minority. I was someone who had a voice, some measure of authority and personal agency. Yet, as a patient, I didn’t feel at all empowered to be vocal about my needs or fears. I thought about how voiceless you become in many ways just through illness. And, perhaps more importantly, I realized that, if I felt that way, then the experience was far more common than I had understood it to be.

Once I framed it that way for myself, I felt a responsibility to admit the ways in which my own system had in many ways failed me because, if it was failing me, then it was bound to be failing others. What about people who don’t have the medical vocabulary or the foundation of knowledge about what is going on in their body? What about those who don’t know the people in the room or the roles they are meant to play? Medicine is a black box for so many.

We have an obligation to fix this for the people who can’t tell us we need to fix it. Once I felt that responsibility, it led to me writing the piece and, ultimately, to writing a book about my experience.

In the NEJM piece, you admitted that you had done and said the kinds of things that as a patient you found painful.

It was really important for me in telling the story that this was not in any way an exercise in attributing blame or finger pointing. It was an exercise in describing our culture. This is who we are. This is who I was. I just hadn’t seen it from the patient’s point-of-view. Until you do that, you can’t really appreciate how even the smallest things matter — the things we say casually, the things we don’t think are overheard, the casual way we frame illness for people – all of it matters. It’s embedded in the metaphors of illness we use – illness as a battle, a war. There’s so much that’s unconscious and part of the culture that I think we need to bring to the surface so we can say, “This is who we are. Now, is this who we want to be? Because right now, in this moment, it’s who we are.”

As a result of sharing your experience, new employees in your organization now learn the difference between unavoidable suffering and avoidable suffering. Is there a story you can share that helps illustrate why this is important?

In illness, there’s suffering. That’s just an inescapable reality. Illness is a disruption of our sense of who we are, our identity. When I was sick, it was remarkable to me that there were people who could recognize the potential additive suffering of certain actions so they did things to mitigate that.

Situations that really stood out to me were the radiology techs, who recognized that they could just cover my husband, who was sleeping at my bedside, with a leaded apron instead of waking him every morning, after he hadn’t slept all night. That suffering was avoidable. They just had to see him to prevent it. There were also transporters who alerted the radiology techs to the fact that, although my chart had an infant wristband in it, the baby had died, and so they shouldn’t question me about the baby.

If either of those groups of people had only thought about their role in my care — getting the x-ray, transporting me from A to B — they wouldn’t have seen my needs as a person. They wouldn’t have seen where they could reduce the avoidable component of my suffering.

Everyone who works in health care has points of contact with patients. They might not be clinical points of contact, but they’re important points of contact.

Subsequent to that first disastrous pregnancy, I became pregnant again. I had a son who spent many weeks in the NICU because he was born very premature. I remember the parking attendant looking at me each morning when I was coming to visit. One day, the parking attendant said, “I see you here every day, and you don’t leave until after my shift ends. I sure hope whoever you’re visiting gets through this okay.”

He didn’t know anything more about me than what he observed. And yet he was able to empathize and comfort me. He let me know that he saw my suffering. That simple act of witnessing can be so powerful. In health care, our workplace becomes normalized to us. We don’t realize that for many of the people walking through our doors, or parking in that garage, it might be the worst day of their lives. We all have the potential to be that point of contact that brightens the day for our patients, and acknowledges that this probably isn’t where you want to be in this moment, but we see you.

Your piece in the New England Journal of Medicine has been very popular. What has surprised you most about the response?

I was uncomfortable about disclosing our failures. Historically and as a culture, I think medicine in many ways thinks of itself like a family. There are things that you’re taught that it’s okay to discuss within your family, but not with those outside the family. You protect each other. You put on a brave face for outsiders. I felt guilty about telling my story. It felt a little subversive. But I knew we had to scrutinize the times we deviated from the standards we set for ourselves if we were ever going to improve.

What surprised me was how people embraced the piece. It found a soft place to land, and that gave me a lot of hope that our culture is changing, that we are ready to be more honest and transparent, which maybe I didn’t believe before. Everyone who embraced the paper demonstrated to me that we are ready to be different. We are ready to look at our failures, and talk about them honestly because we do want to change.

What have you learned about the value of sharing personal stories to accelerate meaningful change?

It’s funny because in some ways I always understood the value of stories. The first contact I remember having with medicine was as a child. My little brother, when he was an infant, started drooling profusely. He had epiglottitis, and his airway was closing. My mom called the pediatrician and described him symptoms over the phone. “He’s leaning forward onto his hand. He’s drooling. He’s making a horrible sound when he breathes.” And the pediatrician immediately recognized what it was, and gave her instructions on how to keep him alive as they were driving to the ER.

I remember thinking that seemed like the most beautiful job description I could imagine — listen carefully, and by listening, you could heal. From that moment, I wanted to be a physician.

Somewhere along the way, in our training, we lose that love of story, because historically as physicians, medical school trains us to listen to stories in a very specific way. It trains us to distill out what’s relevant, and then frame it in the context of illness, and leave out all of the beautiful tapestry of the story itself.

What I find remarkable right now is that health care is re-examining stories with a much more open and generous lens. We’re looking at how stories are told, and listening for why they’re told. We seem to be recognizing what stories can tell us about ourselves, and each other, and who we hope to be.

Many people have stories about what got them into health care in the first place. We can use those stories as vehicles for change. We can use them to examine who we are, who we’re not, and who we want to be. It makes everything personal and real. It’s the best tool we have.

How much does the need to focus on data and evidence contribute to devaluing the importance of stories?

Every physician will tell you they have mission conflict as a constant companion in their day. We need to be efficient. We need to focus on the information to find the right diagnosis, keep up with and follow the evidence-based treatment guidelines.

What physicians don’t talk about is that we are the only people who can keep the soul and sacredness of the patient-physician story intact. All of the forces around us will dismantle it — if we allow them to — because it’s the more efficient thing to do. But it’s incumbent upon us to stay in that space, and not let those external pressures drive us away, because that’s where you find longevity. That’s where you find meaning. That’s where you find resilience.

Do you think that getting away from building relationships with patients is part of what’s contributing to what seems like an epidemic of burnout?

I do. If you have time pressures, you’re beholden to that, and it’s easy to let go of the things that you love. I think systems and organizations can help by recognizing that a lot of what they’re trying to accomplish in terms of patient engagement, patient activation, and physician resilience, they can accomplish by giving space for those relationships to develop. Because if they chip away at the time to build relationships, they can’t have any of those other things because we’ll never know who our patients are as people. We’ll never be able to build trust. We’ll never have time for them to disclose important parts of their lives and selves to us. We won’t have the health-related quality outcomes that we hope to achieve because patients won’t be adherent to the treatment plan because they didn’t co-create it with us.

I think sometimes we’re our own worst enemies. We try to systematize everything when the human solution is what we need.

Note: This interview has been edited for length and clarity.

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