Untitled (just call it insomnia.)

During my first year of residency, I cared for a little girl named Z*. She had been on the oncology ward for months, fighting an aggressive blood cancer that hadn’t remitted despite several courses of chemotherapy, each regiment more aggressive than the last. She was on my patient panel for most of my month of heme/onc, and during the entire time she was miserable and in incredible amounts of pain. The only things that seemed to soothe her were sips of water, leg rubs from her mother, and watching Frozen on repeat. By the time I was caring for Z, her mom had a newborn and couldn’t spend nights in the room alongside her daughter anymore. I remember spending a good chunk of my week of night float sitting quietly next to her, watching Elsa sing ‘Let it Go’ over and over and over again, while she cried and asked where her mother was.

Z passed away while I was home one night in between shifts. It was pretty fast - within a few hours of becoming unstable and being transferred to the ICU, she was gone. It was the first time I was up close to a child passing away. I had seen death before, both in medical school and in residency. But I hadn’t seen suffering- not like this, anyway- in such a young and vulnerable child. It was completely heartbreaking. Sometimes you reach a point in caring for a patient when you feel helpless- like your interventions aren’t helping, and maybe by prolonging suffering they are causing more harm to the patient than good. I felt like we had failed her- not because she died, but because she was in terrible pain during much of the end of her life, and maybe instead of fighting her cancer so aggressively, we could have done more to make the end of her life peaceful and less painful.

I didn’t know it at the time, but I was experiencing my first real bout of moral distress. It is broadly defined as a scenario when a healthcare professional feels that they know the morally correct action to take to care for the patient, but are restricted in some way from taking that action (more on the topic of moral distress can be found here, if you’re interested.)

Now all these years later, as I adjusted to working as a pediatrician in a very busy, very high-acuity unit in a low resource setting, I began thinking about this case again. Nearly every day, choices have to be made that bring back those unnerving feelings of discomfort. They don’t all revolve around death, but all revolve around struggling with knowing the right course of action, and not being able to execute it properly. The child we send home who may need a few more days of antibiotics, because there’s no more space in the unit and we need to make room for the next sick child; the infant who goes days without getting the correct antibiotic as the family scrounges together the few resources they have to pay for it; the patient we can’t put on CPAP or oxygen because the only supply available is being shared among several other patients at once. Moreover, when our ability to test and find a cause for a patient’s illness, decision making can become a lot harder (this is related to another type of moral distress related to uncertainty.)

These are challenges I was peripherally aware of during my time in U.S.; they came up rarely, as most of my patients were healthy and resource allocation is not a challenge you have to deal with often. My colleagues here have faced this every day for years. They have incredible knowledge, perseverance and compassion, but underneath the surface is a palpable frustration- a feeling of helplessness, of uncertainty of what exactly needs to be done to tackle some of the systemic challenges we face.

I started writing this in the middle of the night, during a bout of insomnia, but initially struggled to find a satisfactory conclusion, some enlightened wisdom to wrap this thing up in a neat little bow and end on a positive note. A few weeks is not enough time to unpack things, to pick apart the machinery to find the pieces that are broken, and its certainly not enough time to know how to fix them. People who have lived and worked in this environment this every day don’t have all the answers, so how on earth can a Western pediatrician with a few weeks of working here have them in such a short time? I suppose the best I can do is use this feeling of discomfort to keep trying, every day, piece by piece, to understand the fabric, the strengths and the failures of the system here, and support in whatever small ways I can. In the meantime, I suppose I’ll have to get used to this strange discomfort- after all, everyone else here has been dealing with it for years.

*name has been changed.