No final solace

I scrolled through the messages in my electronic medical record (EMR) inbox. Dozens of laboratory results to sign off on, prescription renewals to approve, consultations to review. New messages appeared as I managed and deleted others. I thought of Sisyphus and sighed.

Then a specific notification caught my eye: Elaine Howard has attended the Mount Sinai Hospital emergency department.*

I had just spoken with Elaine a couple of weeks ago. It was a routine telephone visit: dyslipidemia in the context of diabetes. We had commiserated about how strange it felt to be discussing something so commonplace while a pandemic ravaged the world. And we had laughed. That was Elaine’s nature: always laughing her quiet, gentle laugh.

Must be something minor, I thought, and signed off on the notification. I’ll have to ask her about it next time I see her.

Elaine had been my patient for more than a decade, and prior to the COVID-19 pandemic I had seen her in clinic not infrequently. She was in her mid-60s and had a number of chronic conditions that required regular follow-up. She’d never married and had no children. Her best friend, with whom she lived, was her mother, Iris. I had met Iris once, when she’d accompanied Elaine to one of her appointments. I remember being amused to see the same demure smile replicated on both their faces.

A few days later, I received another message in my inbox about Elaine—this time, a brain CT report. To my alarm, it described a mass with associated hydrocephalus.

I immediately picked up the phone and tried to call Elaine. Even if she’d been admitted to hospital, I might still reach her on her cell phone. Unfortunately, I was greeted by her soft voice asking me to “kindly leave a message.” I fumbled for a moment, then said simply that I had received a concerning CT report and wanted to connect with her.

I felt cut off. I knew Elaine well; we had a genuine relationship. And now, a physician she had never met was likely giving her horrific, life-altering news. Perhaps she was alone, or perhaps Iris was with her. Either way, I felt like my absence from her bedside was a form of abandonment.

I tried to call her again the following day. No answer. No answer the following day, either. I tried all the numbers I had listed on her chart, without success.

Then I received another online notification. By this point, I was starting to feel like the EMR was an omniscient but capricious oracle. Depending on its largesse, it may or may not gift me a crumb of information.

This time, it granted an operative note from the neurosurgery department at another hospital. Elaine had apparently been transferred for a biopsy and drain insertion.

I called the unit and spoke with the charge nurse.

“I’m her family doctor,” I said, and pleaded with her to pass my contact information to the treating team. “I know her,” I explained.

A couple of days later, another note—this time, a consultation letter from the hospital’s infectious diseases department about deteriorating level of consciousness.

I struggled to process how quickly things were progressing.

“They think she has meningitis,” I told my trusted colleague. “Postsurgical complication.”

“That’s awful,” he said. “But … people do go home after these kinds of procedures. I’m sure they’ll treat her with antibiotics and discharge her, and then you’ll connect again.”

Of course, I thought. We’ll connect again after her discharge. But less than a week later, I received another notification: Elaine Howard died peacefully in hospice care with her mother at her side.

I physically startled. How could this have happened? I had just spoken with her a few weeks ago, and she’d been completely well. Had I missed something? What if her last visit with me had been in person rather than over the phone? Might I have perceived some subtle sign that would have altered her course?

And what was the reasonable thing for me to do now? Continue signing off on the rest of my results? That seemed grossly inappropriate. I was torn between a confusing sort of grief and the long-ingrained injunction to maintain emotional distance. She was not a family member, I told myself, or a friend. She was your patient. Many of your patients have passed, and it’s part of your work to respect these moments, but also not to be undone by them.

Still, I couldn’t simply continue my work, and I rose to walk around my clinic. I felt aimless, but in truth, I was hoping to encounter someone—a nurse or a receptionist, perhaps—who had also known her, and with whom I could share the tragic news.

I was finally able to reach Iris a few days later. She recounted their devastating misadventure, infusing the gaps in my knowledge with her maternal perspective and care. Her voice was strained—a taut rope stretched to its ultimate, frayed limit.

I listened to her story of how Elaine had suddenly become unable to move her legs at home, how they had struggled for 2 hours to get her out of a bath. When paramedics finally shuffled Elaine into an ambulance, pandemic restrictions meant that Iris would be unable to accompany her. Elaine had cheerfully reassured her mother that they would soon be reunited.

I listened to how Iris had then spent the next 3 days calling various hospitals around the city to locate her daughter. I listened to how she’d finally received a call from a neurosurgical team who informed her of Elaine’s location and horrific diagnosis, and who sought consent for the indicated procedures. I listened to how she’d received another call only days later describing Elaine’s deteriorating level of consciousness and seeking permission to palliate her.

When mother and daughter were finally reunited, Elaine was so compromised that the only way they could express their abiding bond was by pressing their hands together.

I couldn’t speak. I felt I had failed them. Rendered useless, my long and meaningful relationship with Elaine had been ignored and relegated by a system of subspecialty care that had ultimately failed to save her. There had been no final solace, no familiar presence, no communion in the face of tragedy. In her final days, Elaine had inadvertently been deprived of the comfort of a physician who knew her. And, at the risk of focusing on my own need, I had been deprived, as well: of the chance to fulfil a duty to my patient, to do justice to our relationship, to take my final leave.

There was also an indignity to learning of Elaine’s fate through an EMR. It seemed an insult to my relationship with her, to the years we had spent not only addressing her concerns, but also understanding her motivations, articulating her goals, and nurturing something she could trust and draw strength from.

Concerned that I would be unable to complete our call without breaking down, I thanked Iris for sharing her story with me.

“I just don’t know who I’m going to eat with now, or go for walks with,” she said quietly. “She was my best friend, you know.” Then she paused. “But I do thank you for everything you did for her, Doctor, and for calling me now. It’s such a relief to speak with someone who knew her.”

I nodded.

“For me, as well.”

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