In my oncology training, there has been nothing more frustrating — or frightening — than a patient’s ability to automatically receive a pathology report. The 21st Century Cures Act, a 2016 federal law that was recently implemented in full in the hospital where I work, requires all medical information to be provided directly to patients expeditiously, whether it be blood tests, imaging reports, or doctor’s notes. This often creates awkward moments when a patient sitting in a clinic can report her own hemoglobin and creatinine even before I’ve had a chance to review them. But the automatic population of pathology reports is more troublesome than mild anemia. That a diagnosis of new cancer or returning cancer can come at any time and when a patient is in any place — whether physically or mentally — yields distress. The once-solemn handover of a cancer diagnosis from physician to patient is now preempted by a cellphone ding and a user-unfriendly app.
The “old way” was far from perfect. I learned that firsthand early in my training, when I was an internal medicine intern rotating on the leukemia service. It happened between the pair of steel airlock doors that one had to use to enter and exit the unit.
The dim cancer unit was located in a building adjacent to the main hospital, six floors and an emotional chasm above the brimming and bright newborn nursery. In the latter, cries of new life trilled; in the former, the cries were softer and portended lives fading away.
The heavy airlock doors were in place to create a sterile environment in the unit. But the airlock was also a portal to a besieged world. Outside the full-length windows, the sun rose and set over an unfairly serene Lake Michigan, but inside, days were measured in chemotherapy cycles and the predictable fall and rise in blood counts.
That a diagnosis of new cancer or returning cancer can come at any time and when a patient is in any place — whether physically or mentally — yields distress.
I spent a month of 2019 working in that strange and challenging world. Each morning, amid the darkness of the Chicago winter, I trudged to work through fresh snow, passed through the airlock, and changed my boots into a pair of dress shoes I kept under my desk. Each evening, I put on my boots again and retraced my steps back home. There were no windows in the resident workroom, so the only daylight I saw while at work was whatever filtered in through the windows in patients’ rooms.
Often the shades were tightly shut. This was the case in the room of Nick, a young man around my age who had advanced leukemia. His brother had donated stem cells for a transplant a few years back, but the cancer had returned, this time ravaging Nick’s immune system to the point of eradication and turning his body into a breeding ground for hostile infections like the fungus that had eroded his mouth and nose into bloody ruins.
On morning rounds, I would sit in that dark room with Nick’s tenacious wife and we would exchange difficult questions.
“What are we going to do about his pain, his bleeding, his infection, his cancer?” she asked, alluding to the fact that the strongest analgesics, antibiotics, and chemotherapy had not halted her husband’s disease.
“What would he want if all this doesn’t work?” I asked, alluding to the same. We both knew that he was dying. But she kept both the literal and figurative shades closed, pushing — perhaps rightfully — for anything more that could be done.
In that unit, the ultimate test of cure was the repeat bone-marrow biopsy, performed a prescribed number of days after chemotherapy finished. If the pathology matched the sample from before therapy and was dotted with cancerous cells, then the leukemia was too strong for the chemotherapy to break. But if the biopsy showed clearance, then anticipation melted into relief: The treatments had worked.
But relief could be fleeting. Miguel was a young man a few doors down, an immigrant from Guatemala, who showed clearance of the cells from his bone marrow — but his cancer had already invaded the fluid surrounding his brain. Yet his window shades were wide open. Whether the news I shared with him was bad or good, he clasped his hands together in prayer and thanks.
Each day as I exited through the airlock, I tried to wash my mind of these horrors and all that I wished I didn’t know. I knew whose blood counts were rising and whose were stagnant. I knew who had infections I couldn’t treat. And I often had a sense of whose cancer would win. But I couldn’t say all of it — even if I had the heart to — for to share every detail would be disheartening. Leaving those dim halls, in the long few seconds between one set of double doors closing behind me and the other set opening, I was forced to stand in between two worlds: the space of the unit, of knowing and telling tragic truths, and the space of life in the outside world. Each day, as soon as the door opened to the outside, I felt relieved; fortunate to be able to step away, if only for an evening.
But “do no harm” is greater. There’s a difference between a glaring, anonymous, automatic delivery, and a graceful, deft opening of the window shades, slowly, inch by inch, so as not to blind a person’s eyes. This is something that an app cannot provide — a skill irreplaceable, if not the only one that will ever be irreplaceable.
Once, though, I was ambushed there. Maryam, a middle-aged Middle Eastern woman on the unit, had been diagnosed with leukemia shortly after moving to the U.S. She was unassuming, answering only, “Fine,” whenever we asked how she was feeling. She dismissed questions about the possible side effects of her chemotherapy with a distinctive nod of the head.
As the days progressed, and her chemotherapy ended, she too underwent another bone-marrow biopsy as a test of cure. Day after day, as the pathologists carefully unpacked the results, her daughter, Asma, duly became anxious.
“Did you get the report?” she asked me.
“Maybe tomorrow,” I told her several days in a row. But I knew what it meant when pathology took longer than expected: It meant that there was more to look at, and more was never good.
I had just put on my boots at the end of one day when the pathology report returned. I scanned it briefly. The chemotherapy had failed. I sighed, disappointed. I considered sharing the results with her daughter, but I was all alone, a first-year trainee with little experience. I put on my heavy winter jacket and headed for the airlock.
Just before the first set of doors closed behind me, Asma slipped her hand through and held them open.
“Excuse me, did you get the report?” she nearly shouted. “I was waiting with her all day for it.” Her eyes, heavy and sleepless, were filled with fear.
I hesitated, considering what it would mean to break bad news in a hallway. Instead, I lied. “No, sorry. Not yet. Hopefully tomorrow.” She waited with me in silence for the few seconds until the outer door opened — seconds that felt like hours — and then I left. She returned to her mother’s side.
What remains vividly in my memory is not the next morning’s conversation in which I revealed her mother’s persistent cancer, but rather, that moment in the airlock when I didn’t reveal anything at all. I wish I would have had the courage to stand in front of a set of closed doors and tell Asma what I knew. When all she sought was the truth — whatever it might be — my own apprehension overwhelmed me, and I kept her in the dark.
If I had treated Maryam more recently, her unfavorable pathology would have been routed directly to Asma’s inbox. Perhaps she would have read it before I did, or perhaps a few minutes after I left, and she would have frantically searched for someone to help interpret the jargon. Perhaps she would have received the cellphone ding and, exercising restraint, would have still found me in the airlock to ask what was there.
I understand the logic behind the law: A patient’s medical information belongs only to her, and barring extenuating circumstances, a doctor should not withhold information. After all, is it not an essential tenet of the unwritten contract we have as doctor and patient, to share what I know?
But “do no harm” is greater. There’s a difference between a glaring, anonymous, automatic delivery, and a graceful, deft opening of the window shades, slowly, inch by inch, so as not to blind a person’s eyes. This is something that an app cannot provide — a skill irreplaceable, if not the only one that will ever be irreplaceable.
Now, more than ever, I turn to that time in the airlock as a reminder that I must always strive to center these moments of humanity: to turn difficult spaces into places of growth, and challenging conversations into moments of healing.
Eric Silberman ’13 is a physician and writer based in New York City.