Why I can’t get a stubborn patient out of my mind

It wasn’t until my own fertility was at risk that I realized the reason a woman in my care resisted a life-saving surgery 10 years ago.

This article was originally published by the Boston Globe.

The night Catherine and I met, I was a junior resident on call with the gynecology department, and it was one of those nights.

I was overwhelmed — I had at least three emergencies awaiting me, and my pager was still beeping. One of those calls was Catherine, a pregnant Black woman in her 30s, who had come into the emergency room for pain and vaginal bleeding. An ultrasound showed there was no pregnancy inside the uterus. Instead, we saw a small mass in her fallopian tube — an ectopic pregnancy. The pregnancy would never become a child and could kill Catherine if it continued.

I don’t remember how I broke the news to her. I hope that I was clear but kind. I hope I was deliberate, not condescending. I hope I had the presence of mind to sit down, so that I did not loom over her in my white coat while she lay on her back wearing a worn hospital gown.

Doing nothing would be dangerous, potentially fatal. I am sure I told her that

But the choices weren’t great, especially because this was Catherine’s second ectopic pregnancy. She had already lost her other fallopian tube. One, we could give her a medication called methotrexate to stop the pregnancy — but her pregnancy hormone levels were so high that it was unlikely to work. Every day the pregnancy continued, she risked internal bleeding and death. Two, we could remove the entire affected fallopian tube, thereby ending the pregnancy — and with it, the potential for fatal bleeding. That would be quick and definitive, and certainly the safest choice. Three, we could try an older surgical technique: Make an incision on the fallopian tube, remove the fetus, and let the tube heal.

That last option was not popular in our practice. If a pregnancy takes hold in a fallopian tube, the tube is considered damaged and useless, just a place for a future pregnancy to get stuck. Few doctors at our hospital were willing to perform this surgery.

I discussed all of this first with my attending physician —– the doctor assigned to supervise me that night — and then with Catherine in the hope she would agree to a surgical plan and sign the required permission forms. I explained to Catherine that while removing the fetus without removing the fallopian tube was technically possible, we wouldn’t recommend it. But removing her only remaining tube would mean she could not conceive again without using in vitro fertilization.

She was unwilling to commit to any of the options I offered her. Instead, she requested something else entirely: To have someone open her up, look at the tube, and remove it only if it looked abnormal. This was unheard of.

Over the next 24 hours, Catherine’s medical team changed three times. No one wanted to go down the surgical route Catherine had asked for — an approach that lacked evidence or precedent. But Catherine didn’t want to lose her ability to conceive naturally. After a full day of discussions, she chose to take her chances with two doses of methotrexate and went home.

A few nights later, she was back, in more pain and with a mass that had grown bigger. I read the message on my pager informing me of her arrival with dread. Why couldn’t she have come in when I wasn’t on call? I couldn’t imagine she would be happy to see me either. Reluctantly, I made my way downstairs and reviewed her case. I told her she had one option left: Remove the tube.

To my dismay, Catherine declined.

She wanted to speak to my supervisor, and by the time she arrived, I was distraught — afraid for Catherine’s health and life, and frankly, afraid the attending (my supervisor) would give me a poor evaluation. As a junior resident, I was tasked not just with learning and providing care but with demonstrating my competence. These unorthodox negotiations did not make me look good.

The attending decided to speak with Catherine alone. But after a lengthy discussion, Catherine still would not agree to surgery. She asked my attending to leave.

We stood together — the attending, an increasingly anxious ER nurse, and me — at a workstation in the middle of the floor. From there, we could see Catherine behind the glass doors of her bay, sitting upright with her arms crossed and her jaw set, staring back at us. To us, the way forward was obvious: Perform the most reliably life-saving surgery. “Why would she put her life at risk in this way?” I wondered aloud.

My attending responded, “She’s making a point — it’s her saying, ‘I’ll show you.’” Clearly, my attending felt Catherine was being unnecessarily obstinate, even irrational or petulant. But as I looked at Catherine, something about that idea felt wrong. I knew that by then, Catherine had a solid understanding of the consequences of refusing or delaying surgery. Was she really compromising her safety just to irritate us? The attending waited while I saw other patients who needed care. Eventually, Catherine rang her call bell — she had decided to proceed with surgery.

Later that night, we removed her only remaining fallopian tube.

Nearly 10 years later, I had an ultrasound that showed I had a bloated fallopian tube. It was not immediately dangerous — but it could interfere with getting pregnant.

Within a few weeks, I had a phone consultation scheduled with a surgeon of my choosing. A few months later, I met him in person to discuss surgery to remove my damaged tube.

Together, we made some decisions: when to request medical leave and for how long, what pain prescriptions to use during recovery. He asked whether he should just remove the other tube while he was in there, something I may have suggested to patients in the past, because we assume that whatever harms one tube is likely to affect the other.

But I was stunned. I had spent months mourning the tube I was about to lose. And yet even though I knew what he knew, I had never considered that I might lose both. I said no. He gave me a questioning look but did not press further. Perhaps he felt I was making the wrong choice but trusted that as a gynecologist myself, I had the medical knowledge to make a fully informed decision.

I had thought about Catherine occasionally in the years after her surgery, but in the weeks leading up to my surgery, I could not get her off my mind. Like she was then, I am now a single Black woman in my 30s. Like her, I had effectively lost one tube, and leaving the other in place carries the risk of an ectopic pregnancy, endangering my life. Like her, I would be unable to conceive without IVF if the second tube was removed.

Now I recognize as I didn’t then, that the night we met must have divided Catherine’s life into a before and after — with the after involving all the pain, stigma, and expense that comes with infertility. No wonder she pushed us to consider every possible alternative. She was wrestling with the loss of her fertility. With only one fallopian tube left, I understand this now.

But I was able to push back against losing both of my tubes in a way many patients cannot. I wasn’t in an ER with a life-threatening diagnosis. I used my professional networks to find specialists and get appointments. These clinicians knew what I did for a living and treated me with deference. I was able to make decisions without having my sanity or judgment questioned, unlike Catherine. I am confident my medical team didn’t see me as angry, obstinate, or childish. Their professional respect allowed them to see me as a human being hanging on to hope in an ugly situation. As, surely, Catherine had been. Grief sometimes presents as rage, and a Black woman often cannot show vulnerability in a hospital. Now when I think back to the image of her sitting up behind the glass windows of that bay, I see a woman trying not to cry.

If I walked into an ER tonight with an ectopic pregnancy, I would hope the team would look me in the eye and acknowledge how scary and unfair it must feel to lose your fertility. In retrospect, I wonder if it’s empathy that Catherine needed from us and if the absence of that made her propose an unorthodox, risky surgical plan unsupported by any medical guidelines.

On paper, Catherine’s case went well. She received an accurate, timely diagnosis and was counseled on all of the available options for care. Our team ultimately respected her desire to try medication first, despite our concerns that it did not offer the best chance of successful treatment. Her eventual surgery was uncomplicated, and she had no complaints at her follow-up visit with me two weeks later. Even so, I remember that I was nervous to see her, wondering if she held me responsible for the emotional turmoil of those two nights in the ER. Perhaps that is why during our 20-minute visit I only asked about her physical symptoms. I did not muster the courage to say the things I know I would say now: How are you coping with all of this? How can we support you? Is there anything we could have done to make your experience better? I’m so sorry.

For her part, she was polite, and reserved. Her only request was for a copy of her medical records. In my current practice I meet patients like Catherine all the time. They are coming to me after receiving treatment elsewhere for some reproductive health issue, often the same treatment I would have recommended based on my review of the case, but they are still haunted anyway. They wonder if their previous medical team really did consider all the options, share all the facts, and take enough time. Or if the outcome would have differed if they had better health insurance, a lower BMI, or lighter skin.

I could list several reasons we treated Catherine — and so many like her — the way we did: our medical education system, clinician shortages, a lack of social support services, rampant medical burnout. But that’s for another piece. Let me just leave you with this: Surely we can do better.