Denial was a powerful friend, able to explain away most of grandma’s new and alarming features. Her fatigue? She was 89 years old—of course she was tired. Her slightly uneven face? Perhaps she was trying to wink at me, or itch her nose without using her hands.
But the truth had been affirmed and reaffirmed by the hospital emergency department. Grandma had arrived in the hospital five days before, unable to swallow or move her left arm. Her speech was slurred, and the left side of her face drooped markedly. If I had witnessed the initial workup, perhaps that would have been sufficient evidence. It was certainly sufficient for the emergency physicians, who administered intravenous clot-busting drugs to halt my grandmother’s stroke. The intervention stabilized her enough to move to the ICU, where her trial would begin in full.
I was having the time of my life as this ordeal unfolded. It was a beautiful, glorious Sunday afternoon, the kind which occupies a time beyond time. I met up with an old friend for lunch, and together we took her dog—a rambunctious, one-year-old yellow Labrador named Tater—for a walk around Stanford campus. Horchata in hand, I struggled to restrain that powerful pup whose namesake was, ironically, a potato. We meandered our way down to one of Stanford’s many fountains, where Tater proceeded to sprint up and down a long waterway—exiting periodically to chase me, or to eat grass. We were eventually removed by a campus guard, but not before Tater got a good sniff in. He probably considered that a fair deal.
As we put the leash back on Tater’s harness, I received a text message from my father. “Grandma had a stroke,” the message read, “in emergency department now. They are assessing severity.”
My heart didn’t quite drop—and I don’t want to use the word “droop”—but a weight fell on my diaphragm. Each breath was heavy, with an ambivalent heaviness. The situation was vague enough for hope, uncertain enough for worry. This was a Latvian woman who had endured fire-bombings during World War II; whose relatives had survived multiple trips to the Soviet gulags; who had bounced from Europe, to South America, to upstate New York, to California; who had met breast cancer, type-II diabetes, and the deaths of her husband and youngest son, all with a quiet Baltic fortitude. She was a survivalist if I had ever seen one. What could a tiny blood clot do to this woman?
My father was on a business trip to Italy at the time, but he was in constant contact with the hospital. With his mother’s difficulty swallowing, there had been talk of feeding tubes, tubes placed in her stomach—tubes as far as the eye could see. Most of this talk was deeply antithetical to her expressed desires. Thankfully, less-invasive medical approaches had sufficed for the time being.
The first storm had settled, and my grandmother was fast asleep in the ICU. I wanted to see her—I felt obligated, honestly—but it was not to be. The evening had come; she needed her rest, and I would leave for medical school interviews the next morning. For the next five days, I would be far from home and far from certainty. My mother made plans to visit grandma, while my father cut his trip short to return on Tuesday. I, on the other hand, woke up some twelve hours later, gazing through the window of my plane, wondering where I was over the country. Wondering what, if anything, was going through my grandmother’s mind. And wondering how I might make sense of it all.
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My grandmother and I were never tremendously close. We had always cared for one another, but we hardly connected on the same level as other grandma-grandson pairings. There was no strain on our relationship—she simply had her temperament, her personality, and I had mine. She was born in pre-Hitler Latvia; I was born in post-internet America. We loved one another, but our love was settled, unspoken, processed through different cultural lenses.
This was especially true of my teenage years, when any love I had for anyone was clouded by a general, all-encompassing angst. There was no one more foreign, it seemed, than an elderly piano-playing woman from the Baltics. Yet my attitude gradually changed throughout college. While I was studying with the hopes of one day becoming a physician, my grandmother’s life was growing deeply entwined in the medical profession. She was suffering from poorly-managed diabetes; she was overweight; and she certainly wasn’t getting any younger. I began to look at her life with some degree of awe: despite all this woman had suffered, she was stronger and humbler for it.
These perspectives found new light during my Junior year at Kenyon College. Having lost my basketball career to injury and questions of purpose—and facing medical uncertainty of my own—I was in search of healing. I don’t mean “healing” in the medical sense, nor in the fluffy, airy style of self-help books. I mean the humble sort of healing which repairs our broken identities; which reaffirms our place in the world, when that place seems to have vanished. I needed to know that I was not alone in my struggles.
The lines to my grandmother were quickly drawn. Around this time, I began reading books and essays about illness, suffering, and the human fact of fragility. Being Mortal, the magisterial work by Atul Gawande, was one of the most influential works for my young mind. The book was masterful for many reasons, not least its timely topic: end-of-life care in the United States. For all of our medical advances, Gawande realized (and this coming from a general surgeon), we cannot escape our humanity. We cannot escape our mortality. The universality of that idea—of the common, fallible life—was world-altering. As a young man obsessed with success, status, and physical form, I found a sobering humility in Gawande’s work. As BJ Miller, the UCSF palliative care physician, said at a recent Stanford symposium, “We are the dying.” We are also the suffering, he emphasized—as no one goes through life untouched by pain, loss, or tribulation.
Miller’s life is but one proof. During a late-night escapade as an undergraduate at Princeton, he thought it would be fun to climb atop a nearby commuter train with his friends. He went first, and when he had summitted “The Dinky” (as the train is known), ten-thousand volts of electricity shot into his wristwatch, through his left arm, down his torso, and out his feet. All he remembers of the incident is waking up in a hospital, completely unaware of what had happened. And all he knew, at the time, was that he needed to pee. Miller stood up to find the restroom—his electrified feet still crispy from the burns—and was rudely awakened to his new reality: the catheter had run out of slack.
The college Sophomore then began, what he called, his “relationship with death.” But this was not death as some philosophical concept, or an empty abyss. This was an in-depth look at the imperfection of human life. Miller would need a triple-amputation surgery—both legs below the knee; his watch-wearing arm below the elbow—and this firsthand suffering, this introduction to death, would refocus his entire life. Returning to Princeton one year later, he began studying art history, trying to understand how our perspectives influence our ideas of meaning. He then took those fresh perspectives to the medical profession, where he now serves as a palliative care physician and pioneer in end-of-life care. His suffering was tremendous; but it was the means through which others would heal.
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Prior to the stroke, my grandmother had her own share of experience in end-of-life care. In fact, she was at the very center of that care for several months. On a Saturday evening in late-2017, I received a call from my father. The nurses at his mother’s facility had noticed a swelling in her legs, and eventually called an ambulance when the problem persisted. She was taken to the emergency department—the same one she would visit nearly one year later—and diagnosed with a rhinovirus infection. The infection led to serious physiological trials, including, among other things, acute kidney failure. I visited the ER on the night of her admission; and for weeks following, I watched her slow journey of human fragility.
The kidneys are truly remarkable organs, responsible for the salt and water regulation of the human body. When they fail, however, their failure is equally remarkable. My grandmother’s insufficient kidney function precipitated a buildup of fluid in her lungs. Her heart went on double-duty, trying mightily to push through an increase in blood pressure. She required oxygenation to remain conscious, and even then, her mental acuity was on-and-off for weeks. After her initial discharge, I visited her in a nearby skilled nursing facility. She didn’t seem to recognize me. Her primary thoughts were those of escape. Things weren’t looking good.
Grandma’s primary care physician soon placed her on hospice care. And though this seemed like a sensible decision to my father and I, we felt an uncomfortable tension nonetheless. Uncertainty is never far off in medicine, not least in end-of-life care. There was debate, disagreement, and divergence in my family, all of us trying to pinpoint the best outcome for grandma. She was almost ninety years old, and had, in her words, “lived a good life.” Most of her daily energy was spent playing the piano. On weekends she enjoyed regular visits from my father, and the deliveries of Latvian bread which accompanied those visits. Her life was simple, and so were her fears. Of all the places she could go, all the fates which might await her, there was one location most loathsome of all—the hospital.
Yet, as we came to see, end-of-life care is rarely so simple. My sister, a resident physician fresh out of medical school, was adamant on sending grandma back to the hospital. Those physiological puzzles—her kidney failure, her fatigue, her weakened heart—could all be solved with intense, focused, medical care. Placing her on hospice was, in a sense, giving up. But I had trouble with this logic. Not with my sister’s desires, of course, or with her reasoning. (She was a physician, after all, and I was not.) My trouble was one of perspective.
It is difficult to see a problem in full when one is anxious and uncertain. Yet that is exactly where many families find themselves near the end of a loved one’s life. When finality raises the stakes, questions and doubts abound. For example, knowing my grandmother’s explicit desires—no intubation, no intense medical procedures, no extended hospital time—did little to solve our arguments. Sure, she didn’t want intense medical intervention, but what did “intense” even mean? Could she really not tolerate just one day with a tube down her throat? And even if we had clear answers for these questions, people can change their minds when hypotheticals become real.
When a patient is incapable of making decisions for themselves, families must rely on the important (though not infallible) power of advance directives. But even more so, they must rely on an intimate, yet structured, knowledge of that person. They must know, as Gawande would say, “what matters in the end.” For my grandmother, “what mattered” was simple: comfort, quiet, the wellbeing of her family. If energy allowed, the piano. So one year ago, my family and I removed ourselves from the complicated inquiries and debates. We opted instead for a much simpler question: Will this or that medical care make grandma comfortable? Give her a quiet life? Promote our own well-beings? Just like that, our ambiguity reformed into a crystal-clear answer: No. We placed grandma on hospice care, where she would receive regular nursing visits, patient-centered care, and a weekly volunteer to play guitar for her.
Then a perplexing thing happened: my grandmother regained her strength. With nursing care and rest, her swelling subsided. With more attention to food intake, her energy grew. She took workout classes at her assisted living facility, and enjoyed regular walks up and down the hallway. She even began lecturing her volunteer on the value of musical practice. Given the hospice-required prognosis of “six months or less” to live, she was not simply living—she was thriving.
Living longer was the last of my grandmother’s priorities, yet hospice had somehow bolstered her odds of a longer, healthier life. That, of course, was never the intention. Her nurses, her physicians, her volunteer, all wanted something much simpler: whatever she wanted. It was a paradox which Gawande noted in a recent New Yorker essay: “Like many people, I had believed that hospice care hastens death…[but studies suggest otherwise.” Patients on hospice, for some diseases, can actually live longer than their non-hospice counterparts. The studies Gawande was referencing, for instance, found that hospice-eligible patients with pancreatic cancer, lung cancer, or congestive heart failure lived longer, on average, if they chose hospice over further treatment. The difference wasn’t otherworldly—three weeks to three months, depending on disease—but it was instructive nonetheless. “The lesson seems almost Zen,” Gawande wrote: “You only live longer when you stop trying to live longer.”
This, of course, is no debunking of treatment-based medical care. It is simply an example of how prioritizing one’s desires at the end of life—as opposed to blindly pursuing treatment—can lead to meaningful, and perhaps surprising, outcomes. Had my grandmother gone back to the hospital, her physicians might have solved her kidney problems more quickly. They might have addressed her poorly-controlled diabetes. But at what cost? With regular wakeups to check her vitals, my grandmother wouldn’t have gotten the rest she needed. With the strange people and piercing lights, her confusion would only magnify. The hospital is a fantastic place for focused medical care, but it can be a terrible place for what matters in the end.
So, even before my grandmother’s resurgence, I was grateful for her hospice care. My gratitude only multiplied when that care exceeded our best expectations. As the months went by, grandma’s body and mind grew continually healthier. So healthy, in fact, that she no longer qualified for hospice. Some nine months after her initial visit to the ER, things were back to normal. Things were as they should be.
But if I’ve learned anything from the writings of Gawande, the work of Miller, or the life of my grandmother, it is this: we are still “the dying.” Medicine has its victories, the body holds its ground, but mortality always wins the war. For all our human advances, we have yet to cross that line in the sand. We have yet to outlive our humanness.
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I was struck, but not the least surprised, to receive that text message from my father in mid-October of 2018. My family had walked this difficult path before: being stunned by, but eventually accepting, my grandmother’s mortality. As I gazed down some thirty-thousand feet from my airplane the next morning, my thoughts were heavy, but calm. I returned home five days later, not long after my grandmother resumed hospice care. I met my father outside the assisted living facility, still clenching my final, rebellious hopes.
We opened the door to her dimly-lit apartment. There was a small living room area in front of us, which opened into a bedroom on the right. We passed through the doorway to find a caregiver feeding my grandmother (she still had difficulty swallowing). Dinner was finished, and the caregiver left. I surveyed my grandmother’s face: one eye was half-shut, the other opened wide with (what looked like) joy. Her left arm was immobile, though her right hand clasped mine with the strength of an ironworker. She broke the momentary silence with her typical greeting—“How are you?”—though it sounded like she had been gargling salt water at the same time. “Good to see you!”
That moment was, perhaps, the most surreal in my recent memory. On the one hand, it simply confirmed what I had known all along: that grandma’s life was different now. If she couldn’t regain fine motor skills in her left arm, her piano-playing would suffer at best—and cease to exist at worst. If her swallowing remained difficult, she might never again enjoy that tough Latvian bread. My grandmother was back on hospice—back in the hands of the most caring caregivers—but would she retain what mattered in life?
Amidst these deflating doubts was one speck of hope: we had prepared for this. My family and I had already thought through the hard problems, the concrete reality of my grandmother’s mortality. And in doing so, we had built the thoughtful resilience needed at the end of a loved one’s life. Now, we had a chance to do things right. Like the coda to a Mozart symphony, we had the opportunity to give grandma a peaceful, yet memorable end. It was an important, inspiring, and humbling prospect.
There was one final layer of meaning to that moment with my grandmother. It was the last to come to my mind; but it had been staring at me the entire time. As I looked into my grandma’s eyes, as I surveyed her tired soul, I saw something startling and familiar: myself. I heard Dr. Miller’s refrain—“we are the dying”—and knew that I was not so different from this 89-year-old Latvian woman. I, too, would walk her path. I would suffer illnesses, setbacks, uncertainties both physical and existential. Looking at this serial survivor, I knew that my youth and health were worth cherishing—but they were so, so, very impermanent.
What do I do with that? What does a 23-year-old man, about to begin a new phase of life, do with the fact of his death? And even before death, what about all the suffering that might come before? I might not die for several decades, but I could certainly fall ill—to heart disease, say—or suffer a chronic injury. I could lose what matters to me now, long before the end.
Oddly enough, I find deep comfort in that chipper reality. Not necessarily in suffering or mortality themselves, but in those three layers of meaning gifted by my grandmother.
First, the human universality of suffering and death. The humbling realization that each one of us—regardless of status or background—exists on a spectrum of trial and tribulation. Second, the opportunities engendered by that universality: the chance to invest in a meaningful death, the same way we invest in meaningful lives; the potential to design new aspects of healthcare, new systems of dying, which will serve the needs of our aging population. And third, the deep empathy which comes through pain and tribulation.
These realizations are far from novel; but they are, in my opinion, revolutionary in potential. They help us see that the dying are still alive; that there is healing which comes when we, like Dr. Miller, shift our perspectives to see new forms of meaning. As human beings, we can be united in our uncertainties and imperfections. But to do that, we must first realize that we are fragile, fallible—and not alone.
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I sat in my grandmother’s room as the dusk turned to evening. Sitting next to her on the bed, I stayed largely silent. The two of us were alone for a few minutes, as my father left to fetch his mother’s eyedrops. The weight I had felt just one week earlier, the uncertainty which swirled as I gazed from the plane—these still remained. But unlike those previous moments, my feelings were no longer burdening. My grandmother’s life, death, and lessons for my future self, were all viewed through a new lens. They were manifest as heavy, difficult realities, yes. But human ones all the more.
I had little clue what would happen to my grandmother in the next weeks or months. I didn’t know if she would be able to play piano, or eat Latvian bread. But I had walked this path before; I had thought the hard thoughts. I took one deep look at grandma—Ruta, is her name—and went back to thinking, to considering my role in her life-until-death. I grasped her hand gently—smiling, now—and imagined what else, to her, might matter in the end. “It’s great to be here with you,” I said loudly, so she could hear, “It really is.”
“Thank you,” she replied in her thick, loving, Latvian accent. “Thank you.”
