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A Piece of My Mind
September 10, 2019

Don’t Fear the Reaper

Author Affiliations
  • 1Perelman School of Medicine, Department of Dermatology, University of Pennsylvania, Philadelphia
JAMA. 2019;322(10):929-930. doi:10.1001/jama.2019.12602

I knew my grandma Eleanor couldn’t have many years left. She was 96, and though her mind was unrelenting, she was increasingly physically frail. The last several years, I tried hard to savor every time I saw her or spoke with her on the phone. Do you know that feeling, when you know every conversation might be your last? Do you hold on to voicemails, just so you have a recording in case they die?

As the only doctor on her side of the family, I was my grandma’s default resource and advocate. But I also learned more about medicine from my grandma than from any rotation in medical school.

Eleanor was always my fiercest, strongest role model, a force of nature and endlessly opinionated. A former biology teacher and principal in New York City public schools for decades, she was on the committee to write the sex education curriculum for the school system in the 1960s. She appeared on public television, performing science experiments to teach creativity in the classroom. Later, she taught an adult education class at the 92nd Street Y in New York, entitled “Controversial Conversations,” on topics ranging from abortion to transgender issues until macular degeneration forced her to stop. If you knocked on her door, she would answer, “Friend or foe?” Yet she would open no matter what your answer, because, she explained, a foe might make for interesting conversation.

She spoke frankly about the world and had no illusions—about justice and fairness, about sex, about religion, about life and death. She told me that it was ridiculous to say the elderly were living their “golden years.”

In what way exactly is life great, she would ask, when your body falls apart piece-by-piece, and one by one all your friends die?

Grandma started my medical lessons around the time I was in college and first considering medical school. She had just received a kidney transplant at 78 years old, the oldest recipient ever at the time for Jackson Memorial Hospital in Miami. To earn that kidney, she had spoken in defiance of the odds at her age, taunting the transplant surgeon by asking, “What would you say to your mother?” It surprised me how she felt the need to say that to get the right care. She fought for that kidney, and I remember that every time I see my patients struggling to get doctors to take them seriously.

To honor her as the oldest kidney recipient, the hospital gave her a plaque. She hid it in a drawer, saying she didn’t want to be known for being the oldest anything. Every year on her transplant anniversary, she wore leather pants to honor the young motorcycle crash victim whose death gave her that chance.

Starting medical school, I was startled when Grandma first bluntly shared her end-of-life plans. “Jules, I don’t want any life support. I’ve lived a good life. When it’s my time, let me go.” As a young doctor, no matter how hard you try, how can you really understand a person being so comfortable with her life ending? Furthermore, Grandma’s forthright wishes made me realize how some patients might worry less about death itself and more about their death’s impact on others. Several years ago, when my wife and I traveled out of the country for 3 months, Grandma gave instructions to my mom that if she died, I was not to be told until after the trip, because she didn’t want her death to ruin any vacation. Other times, she said to “keep me on ice” and finish out any trip first.

Over the years, as a dermatologist, I ended up being an especially helpful advocate for Grandma, as she had several skin cancers related to her immunosuppression. In her last year of life, we considered options for treating a large and growing squamous cell carcinoma on her leg with lymphedema. The cancer had failed nonsurgical treatments such as intralesional methotrexate and fluorouracil. The logical reasoning was that if we expected her to die in the next year, a surgery would not be worth the trouble. The cancer was lower risk, and a surgery was sure to cause a large and painful wound that would take many months to heal in the most optimistic circumstances. But we didn’t know how long she had, and her mind was as strong as ever, so it was not an easy decision. I tried to make sure she understood what a surgery’s risks would entail. “Whatever you think is best,” she would say. She taught me that even the most intelligent and informed patients still depend on trusting their doctors. As much as I valued patient autonomy and wished to avoid paternalism, in the end, I had to make some decisions for her.

I see many older patients with cancers and premalignant lesions. Grandma taught me the importance of not thinking about diseases in terms of cured vs not cured but rather to individualize and ask if a treatment adds value to a patient’s life. If a lesion has a tiny chance of turning into a cancer and an even less likely chance of being life-threatening, opting out of treatment is more than a rational choice.

You might forgive me for thinking that I was prepared for her death, given how much we had talked about it. We had done all the right things, signed the DNR form, and knew that she didn’t want interventions and wanted to be at home. Yet we hadn’t expected that she would go from the woman who listened to all 8 hours of the Kavanaugh Supreme Court confirmation hearings taking pages of detailed notes, to overnight barely knowing her name. It happened after what seemed a minor fall and subsequent urinary tract infection and pneumonia, but even with antibiotics, this woman who never had cognitive impairment was never fully coherent again. With an unremarkable head CT scan result, the only explanation given was an unsatisfying but truthful analogy provided by the on-call physician: “Sometimes you’re driving fast on the highway, and out of nowhere, suddenly you’re stuck in traffic.”

As baffling as that was, at the end, my grandma was still teaching me, showing me the limits of medical knowledge. As physicians, we often think we understand everything, but the truth is we have more questions than answers. Still, I think my practice is stronger, the greater my humility and acknowledgment of my limitations. I hope my patients can trust and respect me when I tell them, “I don’t know.”

As soon as her clinical situation was clear, I flew down and initiated home hospice care that night. It was the Fourth of July. While the hospice nurse assessed Grandma inside the apartment, I stood on the balcony, staring into the distance at a line of fireworks exploding above the canals. The celebratory mood in the air was a sharp contrast to the events unfolding behind me. I invited the nurse to take a break, and she joined me. We stood silently side by side for several minutes, taking in this beauty of life as a respite from our negotiating the terms of my grandma’s death.

Later that night, as I drove back to my hotel in darkness, a classic rock station played “(Don’t Fear) The Reaper.” In that moment, it resonated with me how, despite all my medical knowledge, all that my grandma taught me, and all that I’ve seen through medical school, residency, and years of practice, I’m still learning to accept the inevitability of death. On the contrary, Eleanor hadn’t seen death as a foe.

In the following days before she finally died, with every new shift, I tried to explain to every new aide, every nurse and doctor who had never met her before, that this was not some frail demented woman. I regaled them with tales to show how this was a bold and opinionated, sassy, and controversial person, whose current state didn’t do her justice. Though she did have moments of clarity, I didn’t want them to treat her like a lifeless vegetable. When I saw oversights, even as a physician, I was afraid to complain for fear it might negatively impact her care, debating if I was getting hung up on nitpicky details. In truth, I think I was trying to get a foothold, a sense that I was doing something, anything to make it easier and follow her wishes. How many patients and physicians must feel the same way?

I tried my best to be my grandma’s advocate, to represent what she would have wanted. Given that she died comfortably, in her home, with her family all visiting in her last days, I can only hope that I did right by her, or at least learned something that can help my own patients.

I think I was afraid I would forget my grandma Eleanor, but through her example and many lessons, I know she remains with me.

Section Editor: Preeti Malani, MD, MSJ, Associate Editor.
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Article Information

Corresponding Author: Jules B. Lipoff, MD, Department of Dermatology, University of Pennsylvania, 3737 Market St, Penn Medicine University City, Ste 1100, Philadelphia, PA 19104 (jules.lipoff@pennmedicine.upenn.edu).

Conflict of Interest Disclosures: None reported.

Additional Contributions: I thank my mother and sister for their support of this essay, my mother for granting permission to publish this essay, Jeffrey Millstein, MD, for his feedback (for which he was not compensated), and Eleanor Capson for being my grandma.

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    4 Comments for this article
    EXPAND ALL
    Thank you
    Marsha Epstein, MD MPH | Retired
    Thank you for your honest sharing of your grandmother's death. I did the same for my mother and grandmother. I hope it inspires more readers to do the same.
    CONFLICT OF INTEREST: None Reported
    A Funeral Today
    Warren Heymann, MD | Cooper Medical School of Rowan University
    My mother-in-law's funeral was held today. She was just a few years younger than Dr. Lipoff's grandmother, and of a similar opinionated, sassy ilk. Given her many maladies over the last several years, her resilience was remarkable, despite the inevitable downward spiral of multiorgan demise. Yet, at the end, she knew it was her time and asked to be let go. We were with her during her final agonal breaths, blending sorrow and relief simultaneously. Thank you Dr. Lipoff for reminding us of the value of controlling our destiny by our desires and expectations even at the termination of life.
    CONFLICT OF INTEREST: None Reported
    You are Human
    Betsy Schmidt, BSN | Director of Nursing in Bristol, PA
    Yes Doctor Jules, you" did do the right thing" by your loved one. As a previous critical care nurse and then hospice nurse manager I became a good listener and caregiver of the human kind. I loved my job with all my heart and I treated all of my patients with the utmost care and respect as if they were my own family. Your grandmother knew right from the beginning that you cared, that is why you eventually were her primary caregiver; funny how that works out. You listened. You had a heart. It was normal for you to scrutinize all of her care. That's how I look at all of my peeps: as if I were doing it to myself. Do unto others, remember? Some people forget those little words, but they are so meaningful. Keep on doing what you do. Your grandmother instilled in you the very best of her, and it shows. Your patients are lucky to have you.
    CONFLICT OF INTEREST: None Reported
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    Reminders
    Carrie Kovarik, MD | Perelman School of Medicine, University of Pennsylvania
    Thank you to Jules and his Grandma for these reminders (although there are many more I could list!):
    - Giving patients the option of opting out of treatment can be a reasonable choice.
    - In medicine, its OK to tell patients "I don't know"
    - Most of all, live life to the fullest with those you love
    CONFLICT OF INTEREST: None Reported
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