It was a cold, blustery morning on that fateful February day. I could not find enough layers to keep myself warm. I carried an assortment of items in my hands as I locked up the house, which led to an embarrassingly massive coffee spill on the front steps. I walked along my usual route to school, trying to brush away thoughts of impending panic as I calculated the number of days left until our next round of medical school exams. When I arrived, I attended my professor’s morning lecture. His words still haunt me.
Towards the end of his presentation on pulmonary diseases, my professor quickly breezed by a slide on pulmonary fibrosis.
“Don’t forget about this one: ‘Dead man walking disease,’” he insouciantly stated. “You have a max of five years to live after diagnosis. Not much we can do for these patients.”
While the professor moved to the next slide, my face visibly blanched. All I could hear was the drowning sound of my own heartbeat thumping in my ears. Is this true? I thought. Nothing we can do? Only five years of survival? Did this apply to my grandpa Baba? But Baba has been sick for six years!
An overwhelming wave of nausea roiled my body, and I could taste the sickening sludge of my now-acidified banana toast creep into my throat. I needed space. I needed to leave the lecture hall. As my emotions threatened to bubble over and errant tears dotted my cheeks, I fled my seat to seek composure. I paced the outdoor school patio, trying to shove air into my lungs and bring my heart rate down. As I gasped to take a deep breath, a deluge of tears threatened to start.
My grandpa’s health had been deteriorating over the last few years. Each year, he became frailer than the last. Recently, he had been suffering from sudden bouts of syncope severe enough to warrant hospitalization. It was clear his health was trending downward, and I felt powerless to change the situation. Hearing an official prognosis for Baba’s disease was devastating. In a matter of moments, any iota of hope I had been desperately grasping onto was shattered — hope that Baba could get better, hope that Baba’s suffering would go away. Any hope that had been sustaining my wellbeing suddenly vanished.
Could there really be no improvement in his health? I wondered. Was this just a random, impersonal statistic, or did this apply to my grandpa’s life as well?
In September 2019, my grandpa passed away from pulmonary fibrosis. This tragic event came seven months after I learned about the terminal nature of his condition. Despite his chronic deterioration, none of us were prepared for his demise.
My mother frantically left New Jersey on the first available flight. Moments after landing in Mumbai, she found out her father was no more. Having missed his death by hours, my mother would never be able to seek comfort in her father’s arms again. Baba’s final breaths had been stolen as she made her way across the Atlantic Ocean. I know that she will carry this staggering sorrow for the rest of her life.
Baba’s pulmonary fibrosis was diagnosed in the spring of 2013 on a routine chest X-ray. His doctors mentioned that his radiograph was positive for honeycomb texturing, but nobody expanded on what this finding meant. On the surface, Baba was in excellent health at that time. No one in the family had the medical background to make sense of “honeycomb texturing,” so we continued to live our lives in a state of oblivion. For my grandparents in India, there were still vegetables to chop, cricket matches to watch and monsoon seasons to celebrate.
Meanwhile, an inflammatory storm brewed in Baba’s lungs. Honeycomb texturing portends an ominous diagnosis: it indicates that the pulmonary parenchyma has been heavily scarred, making oxygen exchange nearly impossible. The sun was starting to set on Baba’s life, and we had no idea nighttime would come soon.
I distinctly remember the summer of 2016 when I accompanied Baba to one of his appointments.
“Doc, my cough is getting worse,” Baba stated. “I used to cough a few times a day, but now I cough all day. And I need to keep stopping when I walk because I can’t breathe deeply enough. Is this normal?”
The doctor nodded, said that it was expected and abruptly changed the topic to discuss Baba’s current medications. A typical practice in India, doctors often refrain from informing their terminally ill patients about disease prognosis. Out of cultural deference to the patient, conversations about impending death are usually avoided. In Baba’s case, his doctors also refrained from telling immediate relatives about disease prognosis. Unbeknownst to us, there would soon be one unoccupied seat at the dining table.
I look back on this experience as a newly minted third-year medical student and am left with deep discomfort over Baba’s end-of-life experience. I understand that candid conversations about terminal illness are not customary abroad. However, I wish this was not the case. I think Baba would have benefited from knowing about the realities of pulmonary fibrosis. Life was such that Baba did not have control over the horrid disease he developed. That being said, at least having an idea of what to expect might have given him a sense of autonomy and enriched his final days.
I am still saddened by this ordeal. As a growing medical student, I now channel my grief to inform my medical practice. When caring for patients facing terminal illness, I strive to have proper end-of-life discussions with patients and their families. Reflecting on this experience has also made me realize that medical education must avoid the sometimes callous argot used to discuss disease. My professor’s use of the phrase “dead man walking” to describe patients with pulmonary fibrosis felt cruel and heartless. I still shudder when I think back on that lecture. We cannot expect students to learn about disease with complete objectivity, particularly when pathology is presented in such an undignified way. In order to enhance our conversations with terminally ill patients, we must also change the way we teach terminal illness in the classroom.
The most important lesson I have gleaned from Baba’s final years is that clinical care requires humanism. Patients deserve to understand their diseases, but patients are also more than their diseases, just as Baba was so much more than his troublesome lungs. To truly do our best for terminally ill patients, we as medical professionals must consider disease in the context of our patients’ rich life stories. We must work alongside patients to help maximize, if not extend, their time left on Earth. That is what Baba would have wanted.
Image credit: Honeycomb (CC BY-SA 2.0) by grepsy