by Noreen Crain, MD, Assoc. Prof. of Pediatrics and Anesthesia, Medical Director, Pediatric Palliative Care
Written in September 2021, rev. February 2022
The pressure of another surge is weighing heavily on us, even as colleagues around the country continue to leave in droves. Unlike early 2020, our Pediatric Intensive Care Unit (PICU) is once again full of infants and small children with severe illness of one kind or another. Everyone is doing their best, working under incessant admonition to do more with less. Some days I wonder what it will take for me to decide to step away from the only thing I have ever wanted to do. I am wounded, and I am weary. I am worthy, and I am wise. In the last few weeks I have noticed a small change in my thinking about this surge and what may lie ahead, particularly for my pediatric patients: I don’t know if I can do this again. Strangely, not knowing may be the most important part of that sentence.
There are three ways of being that I understand as essential to my professional life in pediatric critical care medicine and pediatric palliative care: being with uncertainty, being vulnerable, and being with suffering. Uncertainty is everywhere in medicine; it is pervasive and poignant, uncomfortable and comforting at the same time. At times genuine vulnerability is even harder to endure through countless cycles and swirls of love, heartbreak, honor, service, disappointment, disrespect, betrayal and renewal in my work life. Being with suffering, again and again, may be hardest of all. To be clear, most of our PICU patients get better and go home – smiles, hugs, cheers, Thank-you’s, confetti, the works. But our most important work is with children and families who exist in uncertainty, supremely vulnerable, and suffering in every dimension. As Lin-Manuel Miranda writes in Hamilton, “They are going through the unimaginable.”
Until a month ago, the children who died in our PICU during the pandemic were not patients with COVID. They were children with congenital heart disease or progressive neurologic disease. They were children in car crashes or children who drowned in ponds or pools. They were children with severe congenital problems for whom we had provided care for many years. They were babies who died of SIDS, toddlers who died of child abuse, and teenagers who died by suicide. The suffering that we witness, the burdens we share with patients and families, and the struggles we experience with colleagues and our team are heavy, but they are also sacred. I was once asked by a hospital chaplaincy resident, despondent after leaving the room of a 12-year-old girl dying of cancer, how we could do this day after day, night after night. While more nuanced than it sounds, my answer to her was, “Because we can.” There is so much more at stake now.
Burnout can be a terribly imprecise term, despite its quantitative origins as an inventory. Nevertheless, it seems to have stuck. Mine was at least ten years in the making. Meetings, proposals, pilot projects, elevator pitches and business plans about a gap in patient care that I saw so clearly and I could help fill were met with smiles of encouragement, but no budget item. My failure to persuade my colleagues and leaders over the years felt like varying degrees of head-banging frustration that would meet the definition of insanity, but it was not yet soul-crushing. Onto that pile of burnout debris floated COVID, and the spark caught, finding fuel around every corner.
I changed – my thinking, my coping, my intuition, my teaching, nearly everything in my work life. Some changes were minute, yet they conspired in a negative direction. I could not look at bad behavior among stressed colleagues with any compassion. I only saw moral failing and threats to my own integrity. There probably was some morsel of truth in those perceived threats, but my perspective skewed me toward outrage. Because of my wounds, because of my attachment to outcome, rooted in righteousness, my vision was constrained. That’s a bad way to practice medicine and an exhausting way to live. Even on my darkest days, I was not suicidal, and for that I am forever grateful. I got to the point of moral disgust, though, for a few ugly and uncomfortable moments. When sobbing in the bathroom day after day was interfering with my ability to make rounds with my team and perform the hotel management duties required of me, I began to wonder if this – whatever this was – was sustainable. People under tremendous strain have imperfect cognitive and emotional functioning. For years I’ve known this to be true of the parents of my patients, people trapped in uncertainty, vulnerability and deep suffering. I just could not see it in myself. Not by myself.
In time, I began to see the false dichotomy rising from my bonfire of burnout plus COVID: should I stay or should I go? Cue The Clash. Seeing that falsehood was particularly ironic since reframing the question is something we do in palliative care all the time, particularly at the intersection of critical care and palliative care, an intersection that I helped design a generation ago. Still, I had trouble finding an Option #3 that could restore my integrity.
After a while, some things changed for the better, uncovering an alternative that I could tolerate. I started giving small gifts. I always loved buying cards, but I started writing in a few and actually mailing them to family and friends. I found a way to bring treats to the team on my night shifts again with individually wrapped, COVID-approved chocolates, cookies, and teas. I sent a book I had enjoyed to friends, parents of a beloved patient who died thirteen years ago and who, since that time, I am honored to call friends. I was able to give the gift of music to a friend enduring unimaginable grief.
Music has been both ephemeral and essential. During the spring and summer of 2020 I was frozen, waiting impatiently for the latest installment of Songs of Comfort from Yo Yo Ma. On my short drive to work I was singing aloud to Adele or Audra McDonald at an impossibly loud volume for that hour of the morning. I sang songs from Hamilton over and over again. I sprinkled in choral music, rock music from every decade, jazz classics and new wave, Bob Marley and Zac Brown Band. As the months wore on and the pressure mounted, somehow I let that essential piece of my soul get hidden; I still can’t quite put my finger on what happened. I noticed recently that I am singing in the hallways again at work, still softly to myself, muffled by a mask. It is hard to sing in a mask. But it is very comforting to realize that part of me is back, at least for now.
I don’t know if I can do this again. Some days are better than others, and the converse is also true. It is a daily decision to rest in that uncertainty, to risk vulnerability, and to be with suffering in all its forms. In we must go, as galactic wisdom might say.
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