I stood outside the busy ICU room with Gregory’s mom, holding her hand and talking softly, while the team inside removed his breathing tube and prepared him for his final trip home. Gregory was dying from a devastating brain tumor with no known cure, and his mother had made the difficult decision to take him off his ventilator and bring him home to pass away among his family. When the tube was removed, we went back into the room together. I said goodbye to Gregory, who before his diagnosis was a bright and charming 4-year old boy, who loved paw patrol and hugging his mom. He was unrecognizable from the child he once was, his tumor robbing his small body of its ability to walk or talk, to play or laugh. I told him it had been an honor to know him, take care of him, and remind him how loved he was. And then I hugged his mom fiercely, both of us crying quietly. I held her tightly while I spoke to her. “You are an amazing mother. At every turn and every decision, you thought of Gregory and did what was right for him. You will always be his mother and feel his love.” We walked together down the hall, following Gregory on his stretcher to the elevator. I squeezed her hand one last time and stood in the hallway watching the elevator doors close.
I am a pediatric oncologist and, unfortunately, have repeated this difficult and devastating scenario many times. There was nothing medically unique about Gregory’s situation, but it was May of 2020, and there were many unique things about a child dying during the COVID pandemic. Visitation rules allow for only one parent to be with a child, so Gregory’s mother faced this horrible scene alone, and decided to go home in part so she could have the rest of her family with her. COVID also required me to be wearing a significant amount of PPE, a physical separation between Gregory and me and his mom, which was cold and unfamiliar. Safety protocols dictated that I not touch family members, but in moments of intense emotional distress, sometimes physical connection and comfort are the best I have to offer.
For every physician I know, the coronavirus pandemic has made their work more challenging. In my already difficult field, parents must now face hearing upsetting news alone, supporting their child through chemotherapy or a new diagnosis or a relapse with no support themselves. As physicians, we must be separated from our patients and families by physical barriers, only our eyes visible to them in a way that feels cold and distant. While there are many, many, many logistical challenges brought on by the pandemic; the need to frequently test our patients to keep everyone safe in our inpatient and outpatient treatment areas; the incredible number of patients who have contracted Coronavirus and the decisions we must make for their treatment; sick or quarantined physicians, nurses and support staff who leave us scrambling for coverage daily; for me, I find the forced physical separation from my patients and their families to be one of the hardest challenges.
Several months before Gregory died, when the pandemic was surging in New York, and death was pilling up all around us, I lost another patient, Jennifer, to the same terrible brain tumor. This patient was at home and the family did not want to leave given what was going on in the hospital. I will never forget the voice of Jennifer’s mother on the other end of the phone when I explained to her how to check her pulse to see if she had died and talk her through what to do. My inability to be there with them physically at that moment, to have to do the best we could on the phone, to know what they were facing alone, will haunt me forever.
In pediatrics, we touch a lot. We hug because of good news. We hug because of bad news. We high-five reluctant youngsters who instantly cheer up. We tickle a toddler’s tummy and finally get a giggle and a smile. We hold a parent’s hand during a difficult moment. Physical contact is normal and natural to children and part of relating and connecting with them. In a time when staying six feet apart is a mantra, and people are waving to grandparents across glass doors, I have kept distance from my own family and friends, having not seen most of them in the past two years, including my own parents, but I find myself unable to stay physically distant from patients and their families.
In the day-to-day work of caring for children whose lives are at risk, who are critically ill, who sometimes die, at a moment in history when tomorrow is uncertain, and fear and anxiety can overwhelm us, I rely on these physical touches to comfort and to reassure. While I can figure out how to Zoom Passover Seder and my daughter’s first birthday, I can’t figure out how to practice medicine without this. To me, beyond choosing a chemotherapy plan, knowing what imaging to order, or making an end-of-life decision, this is at the core of the art of medicine, the physical care and healing of another person. Coronavirus has taken so much from us and has made so much more challenging in the practice of medicine and the living of life, but I refuse to let it make me a physician who doesn’t hug.
Julie I. Krystal is a pediatric hematology-oncology physician.
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