For,not to

Often in medicine, we emotionally distance ourselves from the pain of pathology, writing our patient one-liners and notes with specific and precise medical terminology to buffer the stings of sorrow. Fresh off vacation, I was handed a sign-out packet for Oncology. I began to peruse the list, trying to gauge how efficient I would need to be with my patients to make it down to Starbucks in time for my morning caffeine bolus, when I paused at a patient, “Coraline.” The sign-out said, “10 yo female with 1.5 years bilateral leg and back pain with ∼4 mo hx paresthesias and inability to walk found to have sacral high grade osteosarcoma w/ mets to lung/brain, now on chemo per AOST033.” Stripping back the specificity, I knew what the one-liner was trying to communicate—tremendous suffering.

On my pre-rounds, I snuck into Coraline’s room like Elmer Fudd hunting a rabbit, trying not to wake her, using my phone flashlight to check her Port site and PICC line for rash and carefully listening to her heart and lungs. As I moved to feel her abdomen, I was greeted by tumor in her pelvis. Caught off guard by this bodily invader, I lurched back, and in that moment, I had time to see the bigger picture, beyond sweet Coraline lying in bed—beyond the one-liner that I was given. I noticed her father curled on the couch as he kept vigil at bedside. I noticed the myriad of unicorns and sloth at the foot of her bed, as a bumble bee balloon (her favorite) floated in the corner. Standing in her room at the dawn of the morning, I could not help but notice that she was in deed so very loved.

As the week went on, my Elmer Fudd tip-toes proved less effective, startling sweet Coraline. I apologized for waking her up at the crack of dawn, asking how she was doing; she responded just as she always had—fine, with good pain control. Entrenched in her medication administration record (MAR) and Ins/Outs, I made it my goal that day to help find a good bowel regimen for her to help with pain and prevent obstruction from her large pelvic mass. Later in the afternoon, I stopped by to check on Coraline. She was writhing in pain with teeth clenched, but she told me that she was fine, with good pain control. About an hour later, I was called to bedside to evaluate a worsening gluteal bruise that her father had noticed, which was in reality palpable tumor extending from the sacrum into skin, hemorrhaging below the surface and at significant risk for erosion. Together with my senior resident, we consulted our surgical colleagues and developed a plan with contingencies for the night time, tucking it into the stack of chemotherapy protocols so the night team could be prepared to help Coraline. The following morning, I thankfully found out that the plan was not needed. I continued the tip-toe pre-rounding routine, and this time, I asked my pain questions differently, asking “Tell me what hurts” and describing “I want to make sure I’m helping you best with your pain,” for I came to learn that the lovely Coraline was incredibly stoic and bravely seeking to please, and I did not want her to hide her pain for fear of disappointment. Upon looking at her medications, she used twice as many Dilaudid pushes on her PCA pump as the day prior, but she still denied pain. In talking with her father, my goal of an adequate bowel regimen to prevent obstruction had actually made her pain worse rather than better, causing frequent loose stools resulting in frequent turning to change her diaper. It was I who had let Coraline down.

Coraline continued to have pain over the left hip where her tumor was relentlessly marching onward, leaving a trail of blood and misery in its wake, and she required significant volumes of packed red cells and platelets without a robust response. Therefore, the team began to think outside of the box. With certain bleeding tumors, Interventional Radiology (IR) can embolize a blood vessel as a means of palliation. However, a procedure with IR meant rescinding the “do not resuscitate (DNR) and do not intubate (DNI)” code status. Coraline’s very kind and brave father listened to the risks and possible benefits, and he gave us permission to rescind the code status in an attempt to give her a better quality of life with a chance at some quantity. The plan was to obtain a CT of the abdomen and pelvis to assist IR with embolization, which would require intubation. It was Friday, my short-call day, and thus I went home in the late afternoon after Coraline went down to the CT scanner, but before I went home, I made sure to add “[Coraline] is a sweet, stoic 10-year-old girl” at the beginning of her one-liner in the daily progress note, to be carried forward for other providers as an emphasis of her humanity.

In order to be the best doctor that I could be for Coraline, I wanted to know her entire story so that I could see her holistically as a human being, rather than a one-liner or series diagnoses, and I fell down a rabbit hole of notes in Epic and PowerChart at home that night. I learned that Coraline had been through a lot in her 10 short years, including significant bullying that resulted in her transitioning to cyber school. Amidst my rabbit hole, her CT read came back, and it revealed the merciless extent of her tumor without a white flag in sight, now with tumor erosion of her right mainstem bronchus. An anesthesia pre-operative note populated on my virtual clipboard, and I was pleased to see the one-liner was carried forward as “a sweet, stoic 10-year-old girl.” I continued to “chart-stalk” from home when a note from the Pediatric Intensive Care Unit (PICU) popped up; Coraline was unable to be extubated after her procedure with IR and was placed on a ventilator. My mind began to digress further, now focused on the fact that Coraline had been shown so little mercy in her short lifetime, both by her own body and her peers at school. I could not help but perseverate on the fact that she would not survive to be an age where she would learn that she has always mattered, even when the world led her to believe otherwise, breaking her little heart and spirit; I empathized with the fact that she would not be able to realize that it would have gotten better and that the bullies did not matter in the end—that maybe one day she would even grow-up to become a doctor. It again felt like I had let Coraline down, and I was deeply troubled by the fact that now, her gracious, kind, and loving father may never get to say goodbye if extubation efforts continued to fail.

The weekend came and went, and I was afraid to visit Coraline in the PICU, plagued by cognitive dissonance. Four days after intubation, I had the chance to visit Coraline with the fellow and attending on Oncology consults. Coraline was awake and relatively alert, still maintained on the ventilator. Our eyes met, and for the first time, she had “the look”: afraid and slightly resigned. She was frustrated, trying to communicate by speaking around the breathing tube, but having difficulty being understood. Loose hairs studded her white pillow case, having begun to fall out from her chemotherapy as her father sat vigil at her bedside, arranging for family near and far to visit and for Coraline to be able to watch a myriad of movies as a distraction, mitigating the fear. Miraculously, she was able to be extubated successfully and was transferred back to the floor for comfort measures. In writing her transfer acceptance note, I wanted to highlight her humanity and her strength, counteracting the terrifying contingencies of having dark towels at bedside and pushing Ativan in case of significant pulmonary hemorrhage from the tumor eroding her airway. Thus, I began my assessment with “[Coraline] is a sweet, stoic 10-year-old girl whose favorite movie is Coraline” to continue to build onto her humanity before communicating her “widely metastatic high-grade osteosarcoma of the sacrum complicated by pulmonary and leptomeningeal involvement, status post three IR embolization of arterial bleeds and 7 days of intubation in the PICU.” I needed to remember her humanity. She needed us to remember her humanity.

The morning after she was downgraded, the Oncology team discussed goals of care, particularly with regard to continuing the chemotherapy she would be due for, and the fellow offered striking wisdom when talking with her father. She described that in medicine, sometimes there are things we do to patients rather than for patients, and she emphasized the importance reflecting on what care plans would be doing things for Coraline. After this conversation, her father decided chemotherapy would not be doing things for Coraline and wanted to pursue quality of life with comfort measures only. This conversation and care dichotomy struck me deeply: for, not to.

I transitioned from the Oncology day team to night-time coverage, and let her father know that I would be around at night if they needed anything before leaving for the weekend, no longer tip-toing in in the morning. Keeping this care dichotomy in mind, I spent most of the two weeks on nights leaving Coraline and her father be so that they could have uninterrupted time together, only coming to bedside if she or her father needed something. Perhaps I stayed at a distance because I too was afraid. I chart-stalked her from the resident lounge, carefully trending her vitals and being prepared to run up three flights up steps if her nurse called me for an emergency. I read about the final memories Coraline was making with her family: painting a handprint family tree, making a recording of her heartbeat, listening to music, saying goodbye. I longed to visit her—to tell her how amazing she was, to tell her how much she changed my life, to talk about unicorns, to tell her that it was ok—but I knew these conversations would be for me and not for her. Every day, I prayed for mercy for her, pleading to not let her face the unimaginable torture of the fatal pulmonary hemorrhage we were all preparing for.

Early in the morning, on my second to last day of my month on Oncology, Coraline’s nurse asked me to check on her because her father was concerned that she was hallucinating and worried about her breathing. At this point in her disease process, she was started on Haldol the day before. In the dark stillness of the morning, I again tip-toed into her room for what would be the final time, listening to her lungs and heart. I stroked her hair and gently whispered to my “sweet pea” that she was doing amazing—because she was—as she quietly moaned in bed. Her father told me that she was seeing things and talking to people who weren’t there, and I reassured him that she seemed comfortable and her breathing was okay. He then quietly asked me, “This is it, isn’t it?” Five simple words, yet five of the hardest words to say and to hear. I did not know how to answer him in that moment because I knew he was right, and I think he knew that this was it. Trying to suppress the growing lump in my throat and my teeming lacrimal ducts, I knew he needed love in that moment. So, I told him how every time I walked into the room that I could see by the way he looked at her, how truly loved Coraline was. I praised him for his grace in an unimaginable situation and had the opportunity to express my gratitude for having the honor to meet him and Coraline because I knew that I was better off as a human being and physician for having known them both. Coraline calmed after Haldol, though continuing with agonal breathing, and I left them be in peace, hoping that I did enough for Coraline and her father in that moment.

I got home from work later that morning and had a strange feeling that this was it, like her father had said, unable to sleep for the next night shift. I woke up suddenly from sleep and moments later, a text message appeared on my phone that Coraline had peacefully passed with her father at the bedside a mere seven hours after I visited her. I thanked God for His mercy, prayed for her soul and her family, and cried myself to sleep. When I woke-up, I showered and popped on a pair of my glasses to cover my puffy eyes, traversing to Starbucks to get a caffeine bolus as I tried to separate my feelings, like church and state while surrounded by reminders of her absence. At sign-out, her name was no longer on the list. I passed her room, and it was empty. Finally, when I clicked on her chart, a sobering message popped-up, reading, “Deceased patient: Notice the eRecord indicates that this patient has expired. The age displayed on the banner bar is the age of the patient at the time of death.”

Neurotically, I still keep the last sign-out with her name in my backpack, strangely afraid to throw it away into the shred bin out of a fear that I will forget Coraline—one of my greatest teachers. I wish that she could have lived past 10 years of age and beyond 38 days from diagnosis so that she could have had the opportunity to know mercy from her peers and from her disease process, but in the end, she had the greatest gift of all: the unconditional love of her family. It will forever be one of the greatest honors of my medical career to have had the privilege of caring for Coraline and her family. She reminded me of why I chose a career in medicine: seeking to care for the whole person with small acts of great love as to find clarity within the sobering distinction of for, not to. I am forever grateful.

Fly high little bumble bee—you’re free now.