Bearing witness 

By Eric Last, DO, Northwell Health 

We were dining with friends at our favorite restaurant on a Friday evening. Our relationship was kindled by the common tie of having (now adult) children with disabilities. We’d just left our offspring at a monthly social program, a dance for people with a variety of developmental disabilities. 

Small talk and sports team analyses preceded our first course, the most wonderful French onion soup on Long Island. Then, mid-soup, one of our dining partners asked, “Why is the world so unfair?” Perhaps prompted by the dance floor we’d just left, full of (truly happy-go-lucky) people with Down syndrome, autism, cerebral palsy, and multiple variants, she was asking how the world could be so unjust. Her musings turned to the seasonal fundraising commercials for St. Jude Children’s Hospital featuring brave kids battling horrific cancers; the images of homeless, emaciated dogs in the ASPCA commercials; and the war-ravaged kids in the Save the Children campaign. A silent gap followed her next question: “Maybe they never should have been born.” 

In patient care, we see differences, disparities, and contrasts. Within the space of a single day, we see so many people and hear so many stories of things that seem unfair and unjust. My construct (and one that helps keep me grounded in the reason for doing this work) is that I liken my clinic to a collection of short stories. The front door is the book’s cover, and the exam room door opens to new chapters, new stories. Behind those doors are people who are allowing us not only to witness their stories, but are asking us to help edit them, to perhaps change the narrative, to bend it toward a better conclusion. At times, the best we can do is experience the stories and wonder how the characters in those stories, our patients and their families, arrived at that day, looking for ways to help them grasp and cope. 

There are days when the unfairness of the world is grossly apparent. On one such day, a nonagenarian with a pancreatic mass sat behind the door to Room 3, fearing this would be his last holiday season. In fact, when we obtained his prior records, we realized the mass had been there for years, had been evaluated, and was benign. His smile radiated relief, gratitude, wonder and hope. 

In the next story was a 54-year-old who’d already survived lymphoma and the ravages of treatment. He, too, had a pancreatic mass (illustrating how there are common threads in our collections of short stories), found after presenting with abdominal pain originally thought (hoped?) to be diverticulitis. His imaging and work up revealed a pancreatic malignancy that had widely metastasized. He had no smile; his face revealed a flood of tears and grief, knowing the full meaning of the phrase “stage IV cancer.” Hope was nowhere to be found in that room. 

Fairness. It becomes an issue only when multiple things are compared. An event can be compared to an ideal, and when it falls short, it’s labelled unfair. When we go from patient story to patient story, we compare them, disconnected and disparate though they may seem. The young person destined to die soon, while the older one with a similar condition can continue on, seems so unfair.  

Our job, our responsibility, is to be neither the arbiters nor the interpreters of “fairness.” It’s likely that such interpretations are beyond our comprehension, both as healthcare professionals, and more broadly as humans. What we can do, what will enrich the lives not only of our patients, but us as well, is to bear witness, to be the front and back covers of the collections of the stories of which we become a part, so that we can bring their lessons to bear when next we open the door to a new story. 

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