Keeping Watch

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By: Rebecca Curran, MD, PhD

Minor demographic and medical details have been changed to protect patient privacy.

It is my third year of medical school, my first year seeing actual patients, and I am being handed my “list” for the day. “We’re giving you Mira, a 6-year-old Serbian girl, bad cancer, kind of complicated.”

“Kind of complicated” turns out to mean “rare cancer diagnosed three years ago, treated with multiple rounds of chemo, radiation, and brain surgeries, now here for two days with a new brainstem stroke and constant seizure activity.”

We have tried unsuccessfully to halt the seizures with scarily high doses of powerful sedatives, which have slowed some of the overactivity inside her brain but caused her whole body to swell. There are tubes and wires everywhere. Wisps of blonde hair are barely visible under the electrodes and glue surrounding her skull so that we can constantly monitor her brain waves through EEG.

My resident gives me an impromptu lesson in interpreting the wavy lines of the EEG. “See these flat lines? There’s not much happening because she’s so deeply in the coma from the drugs, which is what we want. But, every few seconds, these seizure spikes come through. We’re giving her all this sedation, but it’s not enough. And these waves, here; I’m not sure what they are. It might be because she can hear us talking.”

Sometime during this lesson, Mira’s mother comes back into the room. She stays back but clearly hangs on every word, her eyes darting from the resident to the EEG lines scrolling across the screen. She has the same wispy hair as Mira, and I am startled to realize she is younger than me. It is hard to know how much she has understood without the help of a Serbian interpreter. We had merely stopped by for a quick check of the EEG setup so had not brought an interpreter. Her English is somehow both hesitant and determined. “Sorry, I hear you are saying, we are in room? Mira knows we are in room?”

The resident offers her a small smile. “There is so much we don’t know about the brain. It’s hard to say, but she might. I think the best thing to do is assume that she can. We can look at her brain waves to see what happens when you talk to her.”

Mira’s mother pulls a chair up to her daughter and begins speaking softly as she strokes her daughter’s hair. She looks at the resident eagerly.

The resident glances at the screen and her eyebrows go up. “Yes, actually. Something has definitely changed.”

Mira’s mother travels between the computer and her daughter’s bedside several times, smiling widely at us and pointing to the huge spikes on the screen which appear every few seconds when she reaches to smooth Mira’s hair. The resident and I exchange glances. We don’t have the heart, or the words in Serbian, to explain that the very obvious spikes aren’t brain changes at all, but electronic noise from when Mira’s mother touches the wires.

And yet… there is something. There are small differences in the brain waves, subtle differences that appear when her mother speaks.

Mira’s mother is full of hope. She does not know that this is the end for her daughter, that the sedatives are hurting Mira and not fully stopping the seizures. She does not know because we have not told her yet. It takes time to get the right people in the room, to get an in-person interpreter rather than rely on a shaky internet connection. I look at Mira’s brain waves, and I see a dying brain. Her mother sees only that the lines change in response to her voice.

I wonder what gives me, a medical student, the right to carry around the knowledge that a child is dying before her own mother is told.

I find myself passing Mira’s room frequently, perhaps more frequently than necessary. Every time, without fail, Mira’s mother is at the bedside of her comatose daughter, singing or reading aloud from a children’s book.

***

Mira’s mother’s voice rises, words tumbling out faster and faster. I do not have to understand her language to understand her words. She looks at each face in the room, one by one, but we do not have what she is looking for. After a minute or two, her rapid, desperate speech becomes mixed with sobs, and then she simply stops.

The interpreter pauses and takes a deep breath. “She says…” He closes his eyes, breathes deeply again, then somehow speaks in a steady voice. “She says, ‘We have come so far. We have left our country. We have given everything to save our child. How is it not enough?” He shakes his head and looks at us with tears in his own eyes. “That is basically what she said, a few times, in different ways.”

Mira’s parents are sitting in separate chairs. Her father sits stiffly, fists clenched, eyes straight ahead. Mira’s mother is doubled over, still sobbing. I realize I am screaming at them in my head. “Reach out to each other! You have to learn to do this now!” Mira’s father puts his arm around his wife, and I do not even realize how tightly my shoulders are drawn up until I feel them drop.

There is so much happening, so many thoughts, so many feelings. Everything is weighted with importance. This is not about me, not at all, but that doesn’t stop my head from spinning with the sheer magnitude of what is happening. There is no actual medicine being practiced, and yet I am acutely aware that this is the most important moment I have been a part of all year. My eyes are tearing up but not overflowing, and I think this is okay.

***

Third-year medical students flit into their patients’ lives and then right back out again. I move on to a different hospital, then another. Months later, I am still wondering about Mira. Did her parents take her home? When did she die?

Faced with a free moment, I start to type Mira’s name into the medical record search.

I ask myself if this search is “educationally related” which gives me a legal reason to open her chart. I do not want to invade the privacy of Mira and her family; God knows they deserve some dignity.

I am learning to recognize the mixed motivations that drive me as a future doctor, and on good days I don’t judge myself harshly for them. Can I not let go of Mira’s story because I am a compassionate future-doctor, because of morbid curiosity, or because I just haven’t developed an appropriate level of clinical detachment? I worry that if I start this habit, if I open this chart, I will not stop. I know that I cannot hold in the sadness of every death I will encounter in a lifetime of medical practice. Yet this first time I wore a white coat while terrible news was delivered has become wrapped up in my own identity as a future doctor. I do not know if this is healthy, though I suspect it is normal.

I ask my current attending about the privacy rules, and he says it is good for my medical education to follow up on patients so I can learn about “the natural progression of disease.” I suspect his answer is motivated by compassion, but it is the permission I need to press “Enter.”

Mira went home the week after I left the hospital. They took the breathing tube out and waited. To everyone’s surprise, she began breathing on her own. It has been three months, and she is still breathing on her own. A home health aide comes every day to help the family, and I eagerly read each progress note.

Mira spends most of the time sedated; it is necessary to control her pain. But for a few hours a day- thirty minutes here, twenty minutes there- she is awake. I can picture them: a young mother reading out loud as she smooths the hair of a little girl who responds to her voice.

Residency postscript: Mira did peacefully pass away with her parents at her side some weeks later. I have since been part of and led many painful conversations. Sometimes it still affects me deeply, and I am a better doctor for it.

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Rebecca Curran, MD, PhD, is a third-year resident in the Division of Family Medicine at the Department of Family and Preventive Medicine at the University of Utah. 


2 thoughts on “Keeping Watch

  1. I read this post in the this morning … it’s still very early here … with the intention of beginning a new post myself. When my WordPress app opened in the Tags section where I left it last night when I closed it, it opened up to this blog post. I can’t begin to tell you how emotional it was for me to read this, it brought me back to exactly one year ago, November 13, 2017, and almost at the very hour that my Mom died last year in the hospital. It was because of our personal experiences that we had with the medical staff while spending time in the hospital with her last year, that I developed a new and profound appreciation for those young resident doctors, nurses, physiotherapists, and social workers who work in the medical field. I imagine it must be so very difficult to balance the professionalism needed with the compassion and empathy that a young doctor or nurse needs as they deal with their “list” of patients for the day, and I thank you and the others who work in the medical field who practice the medicine that you trained and studied so long and hard for. Balancing that professionalism with compassion and empathy showed through in your post, and I thank you and all the others for showing us that benevolence every day as part of your own personal humanness …

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  2. A beautifully written post on the experience of great loss. I know of no greater loss than the death of a child while the parents still live. Experiencing this as a health care provider, crying with our patients and their families, though extremely difficult is transformative and allows us to remain connected with our patients, friends and families. I cannot remember who stated the quote “to experience great love in ones life, you will also have to experience great loss”. I think this means we should not stop loving those around us and ourselves, knowing ultimately, that a great loss will be experienced at some future time, this is the essence of humanism and compassion.

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