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Not the Call I Expected

September 08, 2024
by Mark David Siegel

Hi everyone,

I aim to discuss end-of-life plans with all my advanced lung disease patients. It’s a tough topic to raise, especially at the end of a clinic visit, after the PFTs have been reviewed and the inhalers prescribed. I swivel away from the computer to face the patients, inhale deeply, and ask how they’d like to be treated if their lungs failed. Would they want intubation? A trach? The questions often surprise them. Is there something I hadn’t told them? Why was I asking now?

One of my patients was a woman in her 50s with emphysema, whom I’d treated for years. Her face was tired, pale, and thin. Her blond hair was fading to gray, and oxygen prongs clung beneath her nose. Smiling sadly, she spoke in clipped sentences about her shortness of breath walking between rooms and climbing stairs. Her chest reverberated as I percussed her back, and her breathing sounded distant beneath my stethoscope.

She was otherwise healthy but had no interest in lung transplant. She was open to a trial of intubation and mechanical ventilation if her lungs failed, but she didn’t want a trach. We should take out the tube if there was no hope. Her burly, gray-bearded husband agreed.

A few months later, she contracted RSV and was admitted to intensive care, coughing, shaking, contracting her neck muscles as she labored to breathe. We started steroids, nebulizers, and BiPAP, but she soon needed intubation. Like many COPD patients, she couldn’t sync with the vent. She choked spasmodically on secretions. She tried to suck in more air, igniting a cacophony of alarms. She squirmed in the bed, her heart raced, and her skin glistened with sweat as her hands pulled against restraints, reaching for the tube.

We infused our standard sedation cocktail, but with every attempt to waken her, she unraveled. Her husband said she didn’t want this; she didn’t want to suffer, let alone die on a machine. This was the moment we’d anticipated, not thinking it would come so soon.

We kept her sedated and pulled out the tube. Calm settled over the room as she lay in the bed, softly breathing, asleep under a haze of narcotics and hypercapnia. The nurses silenced the alarms and her husband sat beside her, stroking her hand.

Experienced MICU nurses and physicians know it’s hard to predict how long patients will live after terminal extubation. Sometimes the sickest patients settle in and stabilize once the struggling stops. Resting in her dark room, the glass door shut against the din of the MICU, her chest rose and fell as the hours passed. Eventually, we had to make room for another patient, and she was sent to the floor with orders for “comfort measures only.”

I turned my focus to saving lives, assuming I’d eventually get the call announcing her death. Days later, a call came, but not the one I expected. The hospitalist said she’d recovered from the RSV, woken up, and was heading home. When should she see me in follow up?

She visited me periodically in clinic for several more years. We stopped checking PFTs because there was no point. I encouraged her to try pulmonary rehab, but she lacked the energy and motivation. Sometimes I’d bring up transplant but she hadn’t changed her mind. At each visit, I’d percuss her chest and listen to her distant breath sounds. We reflected on the years we’d spent together as doctor and patient, and laughed about the time we’d saved her life by pulling the tube, and agreed that if and when her lungs gave out again, we’d have to let her go.

Have a good Sunday, everyone. I’m looking forward to one last day in Step Down with my fantastic team.

Mark

P.S. A potpourri of classic articles, shared last week in Step Down.