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Role Reversal

The year 2020 was a lot of things for a lot of people. Chaotic, exhausting, heartbreaking, hopeful. It was a year in which my immense privilege—as a healthy, educated white woman—protected me from much of the pain born by others.

And while it was many of those things (especially chaotic) for me, it was also the year I started medical school. The year I moved from LA to Austin, driving across California, Utah and Texas in the process. The year I read fifty-four fiction books to escape the monotony of lockdown.

And it was the year my dad died.

In August of that year, I passed my first medical-school exam. Because of COVID, my classes were all online. I watched Zoom lecture after Zoom lecture from my tiny desk (or occasionally my bed). I spent my class breaks doing YouTube workouts or braving the 100º heat for serotonin-boosting walks.

My mom called during one of these walks. I knew immediately that something was wrong, as she always texts first. She told me my dad was in the hospital–and that it didn’t look good.

At this point, fifteen years into our family’s journey with Alzheimer’s, we didn’t get into a tizzy about little health things. But this was different. He was suffering from an infection and was found unarousable in the memory-care facility. I don’t remember who first said that this was probably the end, but everyone in the family was thinking it.

I made the three-hour drive to Houston amid a classic Texas storm, my tears falling in rhythm with the raindrops down I-70. I was surprised to find myself emotional. After having watched dementia steal Dad slowly, I thought I’d already come to view his death as the end of suffering, not a tragedy. I thought about the things he loved: Blue Bell Homemade Vanilla Ice Cream, the Houston Astros, my mom. I thought about all the things he had lost: independence, memories, everyday choices.

He’d started showing symptoms when I was just three years old. By the time I was in high school, daily tasks were a challenge. In my lifetime, I’d seen glimpses of the intelligent, stubborn man others described–as in his reluctance to give up driving to my eighth-grade basketball games, even after the time he’d gotten lost for six hours on the way there. But in many ways, he was a stranger now.

How do you grieve someone who is already gone? I kept thinking.

When my mom, brother and I arrived at the hospital, it was the first time I’d seen Dad since Christmas. Even my mom, who tried to visit him twice a week, hadn’t been allowed into his facility for months. I laughed. His hair, cut every six weeks, religiously, for his entire adult life, was now a long gray curtain hanging to below his shoulders.

“He looks like a rocker,” my mom remarked. We laughed again–surprising the nurses. But, as my Aunt Jo says, sometimes you have to laugh to keep from crying.

When the resident came to talk to us, he glanced at the copy of First Aid in my lap and sat down to discuss our patient, now on hospital day three.

“You know, when he came in, we detected the infection and started treating it. However, his kidney function has not improved,” he said. My dad’s organs were failing, he went on. We had a few options: wait and see, start dialysis, or stop treatment and transition to comfort care.

He paused and looked from my mother to the floor and back again. Her eyes flickered between my brother and me.

“No, no dialysis,” she said. “We’ll let him go.” Her voice broke.

The physician nodded. “Do you want time to discuss it?”

“No,” my brother said. “We’ve already talked about it.”

The resident left to get the paperwork.

Returning, he saw my mother’s comically large manila envelope of documents and said, “It’s great that you’re so prepared. So often, patients’ families just don’t know what to do—or the kids want something different than the spouse. So thank you.”

We nodded. We’re an analytical bunch, drawn to math and engineering. We’d decided long ago that there would be no extreme measures.

We sat vigil for six days until Dad finally, mercifully, passed.

Those days were confusing. I thought it would happen faster, more dramatically. In all the time I’d spent imagining this moment over the last decade, I hadn’t accounted for all the waiting. Dad died as I sat in his old home office, listening to a Zoom lecture. I turned my camera off and wept as the professor taught a mnemonic about the Circle of Willis.

Fast forward nearly a year—to the day, during my internal-medicine rotation, when I met Ms. Davy. Well into her nineties, she’d been admitted with recurrent infections and was not getting better. We were at a crossroads.

After a particularly rough morning, we met her family in the conference room to talk. After my resident explained the situation—presenting options eerily similar to those offered for my father—there was a heavy pause.

Ms. Davy’s grown children began to cry—a room full of formidable men who looked at us, helpless.

The eldest spoke up: “Well, we don’t want her to go, we don’t want you to think that—”

“But she wouldn’t want more of this. We talked about it,” the youngest finished. They chose to pursue comfort measures.

As our team filed out, I paused to say, “I want to thank you for what you’re doing. These are difficult decisions, and when it comes to this moment, it can be hard to honor people’s wishes. So thank you for doing that for her.”

They looked at me for a beat, then engulfed me in a group hug.

“There might be a lot of waiting ahead,” I said. Then, before hurrying after the team, I promised, “I’ll check on you.”

In the hallway, my resident touched my shoulder and said, “Good job.”

I breathed deeply, holding back tears that I felt desperate to hide. As we continued our rounds, Ms. Davy’s family began that weird waiting period.

Each day, I sat with them and learned about her life, and the life she’d provided for them. I stole lime Jell-O packets and chocolate milk for them from the nutrition room. I said goodbye each day before I left, just as I had to my own father the year before.

I didn’t talk about my own family—afraid of putting the focus too much on myself—but on the last day of Ms. Davy’s life, her oldest held my gaze and said, “I don’t know who you have lost, but she will say hi to them for you. I know it.” This time, I was less desperate to hide the tears.

The art of medicine is delicate, and I am still mastering how to balance showing empathy with expressing my own emotions. Going forward, I think I will learn when to share personal experiences and when to listen. Ms. Davy would’ve liked to hear about my dad, I think.

Only later did I realize that I was doing and saying many of the things I’d wished for during my own experience of witnessing this slow, agonizing yet peaceful death.

I spent most of that clinical year acutely aware of how little I had to offer patients. I couldn’t even prescribe Tylenol, let alone answer complex questions or perform surgery. But my experience with Ms. Davy and her family, which was only possible because I’d been there myself not a year before, was different. I felt empowered, connected, part of something.

2020 was the year I lost my father, but 2021 was the year I found a little more meaning in his loss. I will not reduce the tragedy of my father’s Alzheimer’s to a silver lining by saying it will make me a better doctor, but I will say that these experiences helped me find my voice as a budding clinician. I learned that connecting with patients, sitting with them in their pain or grief or celebration, will be my life’s fuel as I continue to residency and beyond.

I hope that as my “toolbox” of ways to help patients keeps expanding with new knowledge and surgical skills, I will also remember the power of just being with people.

Perhaps that tool, my very first, will prove to be the most versatile of all.

Brooke Upchurch is a dual-degree student studying medicine and health design at Dell Medical School and the School of Design and Creative Technologies—University of Texas at Austin. “I have written privately for years—in my Notes app, in frequently misplaced journals and on the Post-It notes I leave all over the house—to catalog delight and process loss. This will be my first published work.”

Comments

18 thoughts on “Role Reversal”

  1. Beautifully written. I’m so terribly sorry for your loss. Keep using your talent for writing to heal, both for yourself and for so many others.

  2. Ronna Edelstein

    Dr. Upchurch, your story touched my heart. My dad and I waited one week for my mom to find peace; seven years later, I waited a week for my dad to find his eternal peace. My two children were with me, albeit by phone, but having someone there matters so much. You have learned that valuable lesson— and others will benefit from your kindness and empathy. Bless you.

  3. Jeffrey Taylor

    Thank you for mentioning the waiting. We expected my father to die in hours after being taken off the ventilator. Many years later the doctor told us my sister in law would likely live only three days of NASH after admitted with NAFLD. It was closer to three months.

  4. Linda Anderson

    Thank you for sharing your beautiful learning experience. I think you really learned a lot about the human experience. Please don’t ever lose that connection, it means a lot to patients when their caregivers recognize their humanity.

  5. As Marcel Proust so wisely said many years ago, “The real voyage of discovery consists not in seeking new landscapes, but in having new eyes.” I am grateful that a young physician was able to see the grace associated with grief and joy.

  6. Thank you for sharing this beautifully written and deeply moving story. I lost my father to cancer at the age of 20. That experience from 50 years ago, coupled with the mantra from that time of not discussing end of life choices with the patient or family informed my career choices of nursing, social work and then teaching the behavioral sciences to family practice residents. You are on a meaningful path of making a difference in the lives of your patients and families.

  7. Thank you for this remarkable, heartfelt piece. I’ve been an internist for over three decades, and have seen so many families wrestle with the issues you raised. All could have benefitted from your words, and your essay should be required medical school reading.
    I’m so touched by your description of “the waiting”. I’ve been there, very recently. It’s a transition time that needs to be explored, discussed, and respected.
    Thank you again.

  8. You will learn to prescribe medication and hone the art of when to recommend certain therapies. I’m glad you recognize, Brooke that your greatest “tool” is your capacity to lean in and listen attentively.

    I also appreciate the parallels between both stories a year apart. Whether you recognize it or not, you were a guardian angel, a gift to that family.

  9. Henry Schneiderman

    Superbly well-written and so meaningful. You would likely do well as a palliative care physician, but the spirit and emotional insight in this piece say clearly that you will continue to provide superb palliative and end of life care whatever your specialty. Please contact me if you wish to talk career planning or would like some classic and practical papers in palliative care.

    1. I was thinking the same thing. I was a hospice Social Worker for 25 years. We definitely need more physicians like Ms. Upchurch in the Palliative Care profession.

  10. Glenn Lippman

    Thank you for your essay, your compassion and especially the hope you bring to the future of our profession.

  11. When my dad had a massive stroke, I spent the first couple of days in the hospital. The 3rd day, I went home—I needed to sleep. When I came back, my dad was awake. He was paralyzed on one side, and told me that he wanted me to call the funeral home. Tearfully, I said, “OK.” He then told me that he was done.
    There were decisions that had to be made, and medical residents that pushed us to make decisions that weren’t necessary. I told them to leave, and I told my dad’s nurse that we’d only talk with the attending physician.
    There was a family meeting, and we were encouraged to agree to a feeding tube, even though my dad had a living will that specified that he didn’t want this kind of intervention. It was such a difficult time! Then I realized that I wasn’t making the decisions—my dad had already made them—I was speaking for him when he wasn’t able to speak for himself.
    He was transferred to hospice. We were told it’d likely be 3-5 days. It was 3 weeks.
    Thank you for this beautifully written piece. It resonated with me deeply.

  12. Dr. Louis Verardo

    The knowledge you gained at such an early part of your medical career is actually the most important lesson for all of us as physicians – how to be truly present to a patient and his or her family. Well done.

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