A normal part of being in the medical field is being confronted with death. We talk about it in textbooks filled with statistical terms like mortality, morbidity, fatality, and survival rate. We spend years learning about disease processes: how to diagnose them, the pathophysiology, therapeutic drugs and their mechanisms of action and adverse side effects. We talk about terminal cancers and brain death, and put the paddles on a man’s chest and watch as he flatlines; in the next moment, we’re thinking about an upcoming exam or the laundry that’s gone unfolded for the past week. This desensitized medicalization of death is a necessary part of practicing medicine, but the gravity never set in until I started rotations, especially the ICU.
When we talk about death in an ethical sense, we often focus on the idea of maintaining dignity in both life and death. I have found myself often subscribing to the idea of comfort care being the superior choice as a way to avoid prolonging suffering and crossing the boundary into doing harm. I’ve seen this in one of our patients]. I watched this man survive two codes and rounded on him for the entirety of my month in the ICU. He’s in multiorgan failure, ventilator-dependent, seemingly unaware and disoriented. To me, the biggest question is: how much are patients aware of? His face is always contorted in agony. The wristband looped around his emaciated wrist. One day, I walked into the room and noticed he was wearing reading glasses, and it was such a humanizing moment to see him lying in bed, almost able to imagine he could sit up and read a book or watch the movie playing in the room. Is he aware everything we’re doing is to keep him alive, or to him is this a weeks’ long extension of the suffering he is unable to express? It’s a terrifying thought. We pump him full of fluids and platelets, dialyze, ventilate, and compress. It’s been an ongoing conversation with the ethics team and the patient’s family. Looking at him lying in that bed, passively being shocked and injected, likely suffering without any way to communicate it to us…comfort care truly feels like care.
We talk about the dignity to be found in death, but I think we often overlook the desperation. The people who are fighting and terrified and resisting. The people to whom comfort care seems like an insult. I realize how naive my thoughts were, hypothesizing about how at a certain point, the patient would be at peace to let go and end their suffering, but that suffering is also the last vestige of life. Even scared and in pain, people have hope of recovery.
I was involved in a goals of care meeting this month with another patient. The patient has a tracheostomy and terminal lung cancer. She cannot eat or speak or walk or breathe, and yet she isn’t ready to pursue comfort care. I wouldn’t be either. She wants to go outside again. She wants to eat her favorite meal and speak. Instead, all she can do is write out brief sentences on her whiteboard. Question marks and pleading eyes are a poor substitute for a human voice. The thought of dying in a hospital bed, silent and tied to a machine, only to be unplugged and count down the last 60 minutes of my life, is terrifying. If I could buy myself another week or another day—push the problem off until tomorrow—I would, no matter how futile or invasive the therapy.
I feel like a lot of our conversations focus on the virtue of knowing when to end care, and I think those are important conversations. They are ones that I have always bought into; from a theoretical standpoint, I’ve always thought that comfort care is typically the more humane option, but that belief comes from a place of naivety, of being twenty-six years old and feeling very far off from those choices. You can never feel fully prepared for the transition from classroom to clinical medicine, but I think we need to have more discussions on what dying looks like at its worst: when it’s less a question of the quality of human life and more the visceral, human fear of dying. This is not the inferior of choices. It took me looking into the frightened faces of two patients, for whom comfort looks very different, to fully realize that the last days before your life ends are a reality that lies outside of whatever ethical framework I subscribe to in a classroom.
Nicole Varda is a medical student at the University of Arizona College of Medicine-Phoenix. She’s particularly interested in bioethics and narrative medicine. She also enjoys reading, exploring new coffee shops and breweries, and spending time with family and friends. Please feel free to reach out at nvarda@arizona.edu.