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The Fight of His Life

During the early months of the COVID pandemic, the Utah medical school where I teach asked me to facilitate a small group of first-year students in Layers of Medicine—a course that covers what you might call the “messy” side of medicine, including end-of-life discussions.

Just after the course started, my dad was diagnosed with pancreatic cancer. All at once, I felt my personal and professional responsibilities intersect, unexpectedly and powerfully.

As a medical student, I’d learned about the five stages of grief, and had naively assumed that the process was simple and linear. Now I learned differently.

Hearing my students discuss death and dying, I felt particularly affected by one conversation—about clinicians’ tendency to view death as a personal failure.

I realized that, as a patient, my father shared that attitude.

Dad’s diagnosis had come as a shock. Weeks before, he’d been mowing the lawn and tending to his treasured backyard garden.

“My back and shoulder blade are hurting,” he’d told me cheerfully. “It must be muscle strain.” Even after getting the diagnosis, he viewed the cancer as a temporary setback.

Dad’s oncologist commented on his fighting spirit—an optimism fueled by his prior successes in life. Born in a small village in southern India, the fourth of eleven children, he’d grown up in a thatched hut without plumbing. At thirty-five, he’d emigrated to the US and achieved the American Dream—a successful job in real-estate management, a family, a house. 

His medical history also offered hope: Six years earlier, diagnosed with stage 3 gastric cancer, he’d breezed through the chemotherapy and surgery. So he felt confident about beating this new cancer: “After all, I did it before.”

Longing to see Dad face to face, but fearful of traveling during the pandemic, I delayed flying the thousands of miles to New Jersey, where he and Mom lived. Luckily, through telemedicine, I was still able to participate in his oncology appointments.

As time passed I noticed that Dad’s face was growing gaunt—and that instead of standing and pacing during our visits, he sat quietly or lay on his bed. He admitted that he was weaker and no longer felt comfortable driving. (He’d prided himself on his ability to navigate rush-hour traffic in Manhattan.)

“When I beat gastric cancer, I was a different person,” he conceded. Even so, his certainty about surviving never wavered.

“If I can make it through through the Whipple procedure, I know I can recover,” he insisted boisterously.

Still, it became clear that the window for success was closing. He started to need hospitalizations for tumor-related complications. During one, his abdomen swelled with fluid—due to low albumin, his hospitalist told me during our teleconference.

“How low is his albumin?” I asked hesitantly, knowing that normal is 3.4 to 5.4.

“It’s 1.4,” she said.

I gasped. I honestly hadn’t realized how sick my father was. The hospitalist confirmed my father’s growing frailty.

Shocked by the chasm between my father’s rosy view of his health and the medical team’s assessment, I booked a flight home.

After cautiously navigating airports and taxis, an N95 mask on my face and hand sanitizer in my pocket, I finally arrived home—and gasped again when I saw my father’s thin, wasted frame.

I’d come home for two purposes: first, to gauge Dad’s condition; second, to prepare my family for his eventual death. But when I broached the latter with Dad, his response stunned me.

“I’m not going to die!” he shouted in his raspy voice. “I just need to eat more to get my strength back.”

When I raised the question of hospice care and DNR/DNI status, Dad refused to talk about it.

“I want everything done,” he said.

“CPR would only solve an immediate crisis,” I pointed out. “It wouldn’t do anything for the pancreatic cancer.”

“We cannot give up,” he replied firmly. Rising and gripping his walker, he slowly trudged towards his bedroom to lie down. “We cannot give up hope that I will get better. I believe in miracles.”

Later, when I again mentioned hospice care, Mom echoed Dad’s sentiments: “Hospice care is throwing in the towel.” She sought out an oncologist who could offer experimental trials.

It dawned on me that my parents were treating death as an option—an unacceptable choice that Dad could avoid if he wished.

Several days later, Dad was admitted to the hospital again. He clung so fiercely to the idea that he might yet reach “the one-year survival mark” that I began to doubt my own perceptions, thinking, Perhaps Dad will pull through this after all.

I booked a flight back to Utah.

“Julie, come back in a month, when I go through the third round of chemo,” Dad said. “That’s when we will need you.”

Before leaving, I took a picture of the two of us—Dad lying in his hospital bed, me wearing my N95 mask as I hugged him. Not realizing that these were my last moments with my father, I left for Utah.

The next day, Dad’s doctor called to tell me that palliative care would be consulted. Later that day, the palliative-care physician called to say that Dad’s condition had deteriorated; he was having significant pain. They believed that he would qualify for home hospice, but Dad still refused to believe that his disease was terminal.

The following day, his pain worsened. I was surprised to hear that he’d finally agreed to hospice/comfort-care measures.

Later that day, he lost consciousness and needed larger doses of pain medications to stay comfortable. He died soon after.

I don’t know if he’d moved through the stages of grief to acceptance of his death. I can only hope so.

Looking back on my father’s last days, I feel sad about the conversations we had and didn’t have. I feel guilty and regretful about returning to Utah when his time was so short. I feel foolish that I let myself be swayed by his fierce optimism, even though I knew that the odds were stacked against him.

I hope to teach my medical students some of what I’ve learned from my father’s death.

I want them to know that death is not a failure on our part, but something inevitable that we as physicians must learn to accept. At the same time, we may encounter patients like my father, who aren’t ready to accept their own demise, and we must find ways to be with and care for them. We must allow them their vision of reality, even if we do not share it.

It can help to remember that we do share one profound wish—to keep on living.

“I wish we didn’t have to die,” my daughter said recently.

I smiled at her, thinking, Dad probably felt the same.

“I wish we didn’t have to die either,” I answered.

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Julie Kallikkadan Thomas is an assistant professor in the division of rheumatology, department of internal medicine, at the University of Utah. “I love medicine; however, I started to feel burnt out by the day-to-day humdrum of clinic. When I joined as a facilitator for the course mentioned in the story, I discovered how writing can be therapeutic. I now use it as method to sort through conflicting emotions, especially during the trauma of my father’s death. The experience was so murky for me, but writing this piece helped me to navigate my emotions and find solace.”

Comments

6 thoughts on “The Fight of His Life”

  1. Lovely piece with many of the “layers.” I am sorry you lost your father. As a physician who cared for many dying patients, as well as welcoming many babies (full spectrum family medicine for >35 years), I would add from my lived experience that I am glad that I always taught that grief and loss cannot possibly be those stages as if linear, or even all those stages. Even the word acceptance is an incredibly vague and nuanced word with so many meanings. The deaths of my parents and grandparents were teachers for me as I worked through what my grief looked like; the death of my 31 year old son taught me that continuing to live a full life is the challenge and the will to do so a blessing.

  2. Hello Julie! Thank you for writing. Your reflection is so poignant and moving, and I am grateful for your courage to share your experience. As I read it, I found the refrain from the song Frank Sinatra sang (probably to your parents’ generation?) entitled “I Did it My Way!” coming up.
    I don’t know if it fits for your dad, but if so, maybe it offers some solace that those who love him honored his strong and specific view of dignity and agency all the way….. even if we’d imagine a different “ideal” scenario.
    These dads, they teach us all the time, don’t they!?
    All my best, amazing daughter!

  3. Excellent and moving article. When my own father was dying in his eighties of inoperable lung cancer, the doctors had told him nothing could be done, but even as he was shrinking to a shell of himself in home hospice he still checked periodically with my mother to make sure she had put the seeds for his next year’s garden in a safe place. All we could do was tell him we loved him. He never acknowledged his dying and it was our feeling at that point that it was better to follow his unspoken wishes. I still wish I could have told him goodbye, though. When my mother was dying she knew it and said it. Heartbreaking as it was, it was easier to be open.

  4. Dr. Louis Verardo

    Dr. Thomas, you were a dutiful and loving daughter to your father as well as being an available resource of medical expertise to him and the rest of your family. None of us ever feel we do either of these roles perfectly, let alone both of them, but it is the straddling of these two paths which is our duty and privilege to those we love. When my own father was dealing with metastatic colon cancer after relocating to Virginia from New York, I contacted his doctors regularly, “translated” information as needed to him, my mother, and my siblings, visited when I could, but otherwise balanced life as you did: as a practicing physician with not only a sick parent located some distance from me, but other patients closer to home for whom I was also responsible.
    You resisted the urge to impose your worries about your father’s condition on him, allowing him to hold to his beliefs throughout the course of his illness; I can only imagine how difficult that was, and yet somehow, you found the strength. I am sure you miss him, and I am also sure you always made him proud; please reflect on that and on the extraordinary measures you took to be truly present to him during his life and his illness. Both your family and the community in Utah are fortunate to have you.

    1. Hello Dr. Thomas,
      Your father’s experience with illness was his to confront and manage in whichever way he felt was right for him. You “walked the walk” with him and were honest about what was ahead for him, based on your experience. Denial is a powerful coping mechanism and seems like that’s the one that worked for him. It’s ok. He did it his way.
      It’s natural after a loved one dies to second-guess ourselves … because we wish there could have been a different outcome. But in situations like this we can’t change the outcome. You did and said what you could, and supported him all along his path.

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