The Diagnosis of Death

Janna Malone, c2022

I don’t remember the first time I told someone they were going to die. To the outsider, this seems like something that would be impactful enough to leave an everlasting mark. But it was something I knew I would have to do every single day; maybe I’d made a subconscious decision early on that it would be easier if I didn’t remember.

I began working as a physician assistant in 2017. I wasn’t drawn to neurosurgery. I wanted the comforts that came with working in a family practice and the satisfaction that came with disease prevention. Instead, I found myself running a clinic in a major hospital composed of neuro-oncology and cerebrovascular surgery. I quickly learned the ins-and-outs of diagnosing and treating aneurysms, arteriovenous malformations, trigeminal neuralgia, cavernomas, and most importantly, brain tumors. I split my time between clinical duties and the operating room, giving me the ability to walk my patients through the entirety of their surgery, detailing everything from the first cut to the last staple. Sometimes they didn’t want to know.

When someone comes to the neurosurgery clinic, they know something is wrong. What would start out as weeks of hand weakness or difficulty remembering words would turn into a CT scan, eventually progressing to an MRI and a trip to see me. Sometimes it was faster; a headache turned into a seizure, and a week later they find themselves sitting in front of me immediately following an MRI. I stand 10 feet away, on the other side of the door, digesting their name, age, and the story of how they got here. They’ll tell it all to me again in a few minutes.

I take a deep breath and steady myself. I wash my hands and knock. I’ve perfected the combination of being welcoming, smiling, but not coming off overly cheery. They’re rarely alone, but I’m always saddened when they are. I introduce myself to them, and then to every single family member or friend, shaking every hand individually and trying to remember the names and relationships. I know they’re nervous, but I ask how they’re doing anyway. I don’t know how else I’d open our discussion. Most of the time it’s “scared” or “confused”. Sometimes it’s “nervous” or “anxious”. I ask them to tell me the story of how they got here. I sit quietly, making mental notes of extra detail I need, as they and their family piece together how their lives started to fall apart.

“…and now I’m here.” is often my cue that they’re ready to move on. I thank them for the information and gather the remaining details I need – past medical history, medications, allergies, etc. It’s sad to see that they hang on to every question as if it’s going to change the outcome. We work together through a physical exam, quantifying their weakness or vision loss, sometimes finding deficits they didn’t realize they had.

I ask them if they want to see their images. The answer is always yes. I try not to let my face betray me; I know I wear my heart on my sleeve. I bring up their CT scan beside a more recent MRI scan. I scroll through to the eyes – my landmark for explaining what my patient is looking at. “This is your CT scan, and this is the MRI scan you had done. This is your left side, and this is your right side. These are your eyes. We’re looking at you from the feet upwards.” Everyone stares at me blankly, anxiously. I scroll through the images until an enhancing mass becomes impossible to miss.

I’ve had the parents of childhood friends sit in front of me. I’ve had my own high school classmates sit in front of me. I’ve had people I would have never normally met sit in front of me. “That,” I say, pointing to the lesion, “is a tumor inside your brain.” They knew. They didn’t want to believe it, but they had a feeling in their stomach before they even walked into the hospital. But seeing it, hearing it from me, the weight of the diagnosis, it’s like shoving a screwdriver through their abdomen and pulling up as hard as you can.

They don’t hear much that I have to say for the remainder of the appointment. I give them a moment, usually filled with the silence of tears welling up in eyes, before continuing. I explain the probable diagnosis of brain cancer. I apologize, but I’m not sure on behalf of whom – maybe the world, maybe whatever horrible power decided this was their fate. Another pause, usually filled with a whimper of desperation or the sound of tissues crumpling out of their box. My eyes sting too, but I’ve gotten used to this sensation by now.

The rest of the visit is standard. I explain the treatment protocol, including urgent surgical resection with an awake brain surgery, which scares them even more. Inadvertently, discussing treatment always gives patients hope that they can survive through their brain cancer. But nobody survives brain cancer. There are many types of brain tumors that are curable, but a glioblastoma is not one of them.

By the age of 23 I had told hundreds of people that, if the pathology confirmed what we thought, they were indeed not going to “beat” their brain tumor. I gave hundreds of warnings pre-operatively that this could be a fatal diagnosis and served hundreds of diagnoses of death to those same patients when their operative pathology confirmed our worst fears. I wonder if they hate me.

Post-operatively, I watch my patients struggle through radiation and chemotherapy. The nature of a glioblastoma is multiple rounds of surgery, chemo, and radiation in order to fight off the inevitable for just a little longer, each round leading to more disability and less of the person I’d met months ago. Sometimes it was 4 months later, sometimes it was 12 months later, but eventually, I told every patient that there was nothing left to do. Near the end, glioblastomas grow like an unresectable moss around every crevice of the brain.

I don’t remember the first patient I told. I’m sure I haven’t met the last one. But I remember how I have felt every single time. I remember the feeling of telling a new father that he would never get to see his 2-month-old daughter grow up or say “dada”, and how it felt realizing she would never remember her parent. I remember how it felt to see a 28-year-old realize that she would be a widow within the next few weeks. I remember how it felt to see people realize they’d had their last Christmas, without knowing it was their last. I remember how it felt to tell people they would never get to see their child get married, or never get to hold their grandchild. I remember how it felt telling a young woman she would never get to become a mother. I remember how it felt to see parents realize they would outlive their children, or that they’d never get to see them graduate or walk them down the aisle.

I feel guilty that I don’t remember all their names or all their faces. I think this would be too great of a burden to bear. But I do remember how they made me feel. I remember sharing in their despair. I remember the days I went home to sit and cry on the floor of the shower, hoping my skin of the day would peel away to allow me to feel as though none of it had happened.

Maybe you’ve been in my position. Maybe you haven’t yet. But as a physician of the future, you will. Although I remember all the tears and despair and death, I also remember being an integral part of the last few months of so many lives. I remember being a pillar of strength, information, and empathy. I remember being whatever my patients needed, whenever they needed it. When the time comes for you to be in this position, remember that patience is the ultimate virtue. Remember that not everyone reacts in the same way. Remember that you will have to repeat every piece of information 5 times, and that is okay. Remember to be honest and not to withhold anything for the sake of your own emotions. Remember that even rainy days are beautiful, and your petty fights are meaningless. Remember to tell your parents you love them. Remember that it is okay to not feel okay, to wish you could shed all your skin and hair and eyes and soul in exchange for an unscathed version of yourself. Most importantly, remember that there is nobody better than you to be having this conversation with this patient; you have made sure of that, and this is what you have chosen to do as a physician every single day.

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