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When Does Patient Disappointment Matter?

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Certain kinds of patient cases stick with us — medical errors that cause bad patient outcomes, judgment calls that were incorrect in hindsight, and complex social situations that our medical tools are unable to address. I have plenty, just like everyone else, but the ones that are particularly vexing and occupy my mind are ones where I thought we had achieved the outcome we wanted, but the patient was still disappointed. It often seemed to happen when the patient came from a culture completely different than mine.

There is one specific case that I can't forget. After a reasonably uncomplicated pregnancy, a Somali woman in the U.S. presented to L&D in labor. The labor stalled, though. Then, the fetal heart monitoring showed that the fetus was not tolerating labor. Initially, the signs were subtle but quickly became clear signs of distress. I was the resident on call on one of my first shifts. With the attending, we marched into the room and made a clear recommendation: You need to have a C-section. We reviewed our concerns — the labor was stalling, and the baby might not tolerate this much longer. We were abundantly clear.

The patient responded confidently. No, thank you. This is in God's hands.

What? We were perplexed. What were we missing? Did she understand the gravity of the situation? 

Repeated conversations over the next hour — sometimes aggressive — led the patient to finally acquiesce. We were not losing this battle. The C-section finally happened, and we delivered a healthy baby. But what the patient recalled from the entire process was how her wishes weren't honored. That was the end of it. As a health care team, we had done what we set out to do: make sure the mother and baby were healthy through labor and delivery. What else are we responsible for? 

Sometimes, I think about this case. It was an especially stark example of where our values as a health care team didn't seem to align with the patient's. From my experience, when we encounter communities with different values, we often think about overcoming this "other" person's values and beliefs to achieve our team's goals. Although it was not explicit, our approach to the Somali patient was How do we get this patient to let go of her "silly" beliefs so we can do the C-section? After we met our goals, we acknowledged that the patient felt her beliefs weren't honored but ended our reflection with, Oh well, what can you do?

But I learned about a concept called cultural safety later in my career that has provided me with much more guidance on how to approach this situation. Cultural safety is a term used to describe an environment free from physical, psychological, and emotional harm for the patient when receiving care. If I had used that lens when caring for the Somali woman, I might have asked myself the following: What is our understanding of this Somali woman's beliefs and values? What do I know about their community's history, and how could that contribute to our current interaction? Given what I know now, how can I look at this differently as a health care system and clinician? What else should I be doing?

To even begin answering these questions, I needed to know the history and culture of the Somali community. On my first attempt, I looked online and at existing resources and quickly hit a wall. Cultural competency modules were too vague, without specificity on particular cultures. Articles on specific countries were too overwhelming and ended up "stereotyping" an entire group of people. I decided to go to the community, ask them directly and make it publicly available for all clinicians in my community through a podcast called Healthcare for Humans. This is what I learned about Somalia.

Somalia has a long history of colonialism, beginning in the late 19th century with the arrival of European powers seeking to establish trading posts and control territory in the region. The British established control over the northern part of present-day Somalia, while the Italians controlled the southern and coastal areas. In the 1940s, following World War II, Italy officially relinquished control of Somalia to the British, who subsequently granted independence. But the country fell into civil war and political turmoil, leading to more foreign interventions. This colonial past and continued foreign interventions have created a deep mistrust in institutions, including health care institutions. Throughout this history, religion has been a source of resilience and strength for the Somali community. It provides a source of wisdom and guidance for many Somalis, providing them with a framework for making sense of the world and their place in it.

I had never thought understanding this would be as important as maintaining and staying up to date on my medical knowledge.

Of course, the Somali woman wanted to have a healthy baby and stay safe. But I understood her deep reverence for things she can't control and how belief in God has sustained her and her community through risk far greater than what she was facing now. I wish I had asked the following questions in hindsight: Is the baby truly in danger, or are we just not willing to accept a level of risk that's OK by the patient who has been through so much? Is there something else we should do to make her feel safe in this interaction? Do we need a different team or a community birth worker? If we haven't invested in birth workers, why haven't we? 

It was much more than throwing up our hands and saying, "Oh well, we are just different."

Over the last six months, I've had conversations with leaders from several communities, including the Hawaiian, Pacific Islander, and Ethiopian communities, about the history and culture of their communities. Every conversation has led to a deeper understanding on how the community wants to be cared for. I know this will not make every situation easy, but now I know this is the first step to becoming a better healer. 

How do you approach conversations with patients whose values are in opposition to their health care team's?

Raj Sundar is a family medicine doctor in Seattle, WA. His life purpose is to lead people on a journey toward a more compassionate, equitable, and dignified humanity.

Illustration by Jennifer Bogartz

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