“My patient is dying”

My patient is dying.” That’s what I thought to myself on a late night in 2020, less than three weeks after the start of the COVID-19 pandemic. I was thinking about my new patient. Before meeting her, I was told that the two-month-old wasn’t expected to live beyond three days due to her underlying medical conditions. I was also told that the family chose me as her PCP because of my fluency in Spanish, the family’s primary language. 

By my first visit with Lindsey, she’d already been hospitalized several times for respiratory failure and unremitting seizures. And although she was back to her baseline and not currently requiring hospitalization, her parents said they didn’t want resuscitation efforts should she become critically ill again. Furthermore, their fear of COVID-19 made them apprehensive about going to a hospital.  

I sought to better understand the goals her family had for her care and well-being. I was honest with them that being a primary care doctor for someone in palliative care was new for me. And while I may not be the expert in all the medical conditions she had, I was confident in my ability to learn as much as possible about what I didn’t know and to regularly communicate with other care team members. The parents and I developed a plan for routine immunizations, developmental services, and ongoing primary care. 

I then received a call from Lindsey’s mom that her baby was in respiratory distress. Referencing the palliative care plan, we agreed that she should continue to receive prescribed medications. Despite this, the infant started to have more episodes of rigidity and her clinical status worsened. I tried to understand why. Was it her abnormal brain? Could she have COVID? I continued to be in frequent communication with Lindsey’s parents and relaying what I learned to the care team. Soon the possibility of emergency care became a reality. But her family reiterated the desire for comfort care at home.  

It was then that I finally accepted Lindsey’s death was inevitable. “We think this is probably her new baseline,” one of the care team members said in response to a video of Lindsey. She was struggling to breathe and in distress; I felt helpless and powerless.  

This type of primary care was new territory for me. I knew that the baby’s death was coming and knew I had nothing else medically to offer. I thought, “What do you say to parents of a child who is facing death? What do you say?” 

I tried to prepare myself to video chat with Lindsey’s family, something I’d done at least four times over the past 48 hours. On video, mom said, “Hola Doctora.” Her usual high spirits were gone and tears were rolling down her face. She showed me Lindsey, who was still and looked comfortable. The mom said to me in Spanish, “I know she’s not tired anymore. She’s no longer struggling.” 

Tears came to my eyes. I responded in Spanish, “I’m so sorry. I don’t what to say except that I’m here for whatever you need.” 

Later, as I reflected, I realized that I’d never cherished my ability to directly communicate with someone in their preferred language more than I did during that time. No additional steps, no additional connectors; my words could be heard and understood as I intended and vice versa.  

I’m incredibly grateful to Lindsey’s family for allowing me to play such a role in her short life. Thank you. 

This piece expresses the views solely of the author. It does not necessarily represent the views of any organization, including Johns Hopkins Medicine.