I felt that I couldn’t let him face this journey alone

From my wife’s grandparents’ Manhattan apartment, I could hear the noises of traffic and pedestrians in Central Park seven floors below. The sounds were a refreshing change from the beeping monitors, overhead pages and ringing phones that are the usual backdrop to my work as a physician in a large Philadelphia medical center. Here the only background conversations I heard were those of loved ones in the kitchen, not those of patients’ family members, overheard through flimsy curtains ringing an adjacent bed.

The hospice nurse quietly moved about the apartment. My wife sat close by her grandfather, Werner (whom we called Saba, Hebrew for grandfather), speaking softly with him as he lay there in bed. Our two-year-old son sat nearby, dutifully flipping through a Dr. Seuss book, occasionally drawing my attention to a funny looking fish or tree.

I stood at the foot of Saba’s bed. My instinct, honed by my medical training, was to pull back the sheet to check the pulses in his feet. I wanted to read a chart, throw in an order, see if he needed better pain control.

What was his fluid intake for the day? I wondered, then thought, It must be getting harder for him to breathe.

Saba had been through countless rounds of chemotherapy. This had kept him alive and living for years after his initial grim prognosis of a year or less. He’d weathered radiation therapy and innumerable office visits. But now his renal-cell cancer had spread.

A decade had passed since I’d last faced the death of a family member. I was a premed college freshman at the time. I had raced home cross-country to spend the last moments with my grandfather, Zaide (Yiddish for grandfather).

“Remember the cruise?” my grandmother had whispered in his ear, reminding him of their sixtieth-anniversary celebration aboard a Royal Caribbean liner with our extended family. Only moments after she spoke these words, he sailed away forever.

Since then, death and dying had become all too familiar to me — but in a more guarded, less personal sense. Death came buffered by white coats and stethoscopes, or by the controlled chaos of a Rapid Response or Code Blue. Emotions that threatened to become too raw were tempered by statements like “He was so sick anyway.”

In Saba’s apartment, the conversation was light. We spoke of a pencil drawing hanging on the wall, and of the book collection that climbed ten shelves up to the ceiling. An engineer by training, Saba loved the natural sciences — he subscribed to Science and the New England Journal of Medicine — but his erudition extended beyond the sciences to classical music, Jewish history and theology and theater. Today, though, we talked about mundane matters — our dinner plans that night, and whether my schedule would be hard in the weeks ahead.

As my wife, son and I left the apartment, there were no goodbyes; just a simple, “I hope to see you again soon.” We drove down the Jersey Turnpike to Philadelphia for another week’s work.

A few days later, at my outpatient clinic, I found myself across from Raul, who had been my patient for almost three years. Recently diagnosed with cancer, he was here to see me for new onset abdominal pain. He sat staring at me and holding his swollen belly, his sunken, jaundiced eyes framed by deep, cavernous temples.

He looks so uncomfortable, I couldn’t help thinking.

Earlier, seeing Raul’s name on my schedule, I’d hoped to myself that someone ahead of him would cancel so that he and I could have more time to talk. But my hopes had been frustrated: Everyone had shown up, and my “Scheduled Patients” screen was filled with the names of other patients sitting out in the waiting room.

So much for that, I thought.

START NEW PROGRESS NOTE the computer screen urged; the twenty checkboxes in the physician examination section of the electronic health record were unchecked. But still I stalled for time; I just couldn’t make myself rush through this talk.

I kept thinking of how my own loved ones, Saba and Zaide, had been surrounded by family members during their last months and final moments. I felt that I couldn’t let Raul face this journey alone.

Memories from my residency started unspooling in my mind. I’d been down this road many times before with other patients. No doubt each one had had his or her own story and family situation; each must have experienced death’s approach in a uniquely personal way. But suddenly, looking back, I realized how little I knew about any of them. It struck me that I’d often left the “Social History” section of my history and physicals absurdly empty. My usual notes — “Lives with daughter” or “Retired military” — seemed almost insulting; they didn’t even come close to filling the allotted two lines.

I looked at Raul, knowing that when I listened to his lungs, I would hear only faint breath sounds; his chest was already heaving in an effort to draw in adequate breath. If he were to lie on the exam table, a gentle tap on his abdomen would send a wave coursing through its accumulated fluids. His heart must be racing too, overworked as it was from his hypermetabolic state. Did I really need to feel for lymph nodes or look for other signs of his encroaching malady?

After his diagnosis, Raul had told me, “Once I’m feeling better, I’d like to retire to Florida and build a boat.” Recalling his words, I thought, This is the hardest part of medicine: telling a patient that his dreams will remain only dreams, never to be fulfilled.

Sounds from outside the exam room — the muffled voice of my preceptor in the adjacent exam room, an EKG machine being rolled down the hall — broke the silence. As familiar as they were, this time they felt utterly out of place.

Here and now, I wanted to give my patient Raul what I would have given Saba or Zaide in this situation.

So I reached out — but not to pick up my stethoscope or the computer mouse, or to pull the footrest out from the exam table. Instead, I put my hand on Raul’s bony, sunken shoulder.

“I’m here,” I said. “What can I do to help? How can we make this easier?”

Jonathan Gotfried is a gastroenterology fellow. This piece was originally published in Pulse — voices from the heart of medicine

Image credit: Shutterstock.com

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