by Sunita Puri
What had I learned about death in doing this work? I’d seen that no amount of considering or preparing for it made it easy. Talking about it to prepare frightened loved ones, saying or writing good-byes (if one was lucky and lucid enough to do so), and trying to make peace with a higher power might soothe us and help us. We feared it and sought to control every aspect of it, even considering physician-assisted suicide to give us a sense of agency over an unconquerable aspect of human existence. But if death was not only a medical fact but also a spiritual and sacred passage, then it would always have a certain mystery that was perhaps worth accepting rather than attempting to control. Because we can’t control it. We can’t always anticipate or prepare for it. What we define as a “good death” may not be in the cards for us. But maybe we can use the inevitability of death to live differently. Maybe we need the promise of death to guard against taking life for granted.
I thought back to the many times I feared death as an outcome for my patients, convinced that it was my job to forestall it, to control and manipulate nature. Giving death this much power distorted my view on life—my own, and that of my loved ones and patients. Fighting and fearing death obscured finding meaning in living moments.
What if I regarded my own death with reverence instead of fear? I wondered. Or, even more radically, what if I had some sort of gratitude for the transience of my life? Would it change what I worried and cared about? Wasn’t it necessary to think about this when I was in the midst of building a life? Or rather, living my life? And the more I thought about mortality and what it had come to mean to others and what I thought it meant to me, I realized that life was simultaneously so vast and so small.
It was daybreak after a good sleep and exhaustion as the stars emerged. It was the first crisp bite of an apple, the taste of butter on toast. It was the way a tree’s shadow moved along the wall of a room as the afternoon passed. It was the smell of a baby’s skin, the feeling of a heart fluttering with anticipation or nerves. It was the steady rhythm of a lover’s breathing during sleep. It was both solitude in a wide green field and the crowding together of bodies in a church. It was equally common and singular, a shared tumult and a shared peace. It was the many things I’d ignored or half appreciated as I chased the bigger things. It was infinity in a seashell.
I thought and thought that night, making mint tea and taking a few sips, watching the steam rise from the cup and then disappear. It felt strangely calming to focus on the cooling of heat, to appreciate the fact of temporary warmth. Maybe this, too, was the lesson of mortality: appreciating what we have now, in the midst of life, knowing that it is all a temporary gift.
I didn’t want the sum total of my life to be only a collection of my worldly achievements, boxes of degrees, and lists of patients I’d treated. I thought of what I had pushed off or considered unimportant, the things I promised myself I’d do when I “had the time.” I’d call the friend I had been meaning to call for the past year since I moved to LA. I’d take my mother to the beach in Santa Barbara. I’d take a pottery class. I’d write regularly to my uncles in Mumbai. I’d learn to cook Thai food. I’d adopt a puppy. I’d deal with my fear of bugs and go camping. These all seemed like such cheesy wishes as I thought about them. But these were the things I didn’t want to leave my life without doing. Which meant they weren’t small things.
That night was the beginning of a conversation I continue to have with myself, especially in the moments when the wrong parts of my life feel big and cast shadows over the smaller things. Those are the times I return to my copy of the Gita, having stumbled across a passage that perfectly captured how the fact of death has taught me to live differently:
No matter how strongly you ascribe to the universal delusion that you can avoid pain and only have pleasure in this life (which is utterly impossible), sooner or later you must confront the fact of your inevitable aging and eventual death. . . . Therefore, because death stirs people to seek answers to important spiritual questions it becomes the greatest servant of humanity, rather than its most feared enemy.
And there it was—the life lesson, and the death lesson. Vast and small, interlinked. Infinity in a seashell.
Twelve
TRANSITION
My new workplace is a shiny white and gray building that towers over a fountain with frothy jets of water that bubble continuously. Green shrubs and tiny flowers hug its perimeter. Above the fountain, white pillars hold up a red and white banner: KECK MEDICAL CENTER OF USC. Sparrows dart between a crisscross of beams underneath the banner and the dark crevices above the hospital’s main entrance. A short walk away is the Norris Cancer Center, flanked by a cluster of trees that burn gold and scarlet in California’s autumn. Outside Norris, residents and fellows bustle through a quad filled with trees, rectangles of grass, rose bushes, a library, and a bookstore. They glance at patient lists as they juggle cups of coffee and stethoscopes. Students alternately lunch together and hunch over books and computers on a cluster of tables outside the cafeteria. I wander into the student store and scan its offerings: short white coats and scrubs, Red Bull and protein bars, iPads and study aids. I shake my head in disbelief, realizing eleven years have passed since I walked into the student store in medical school for the first time.
Because USC is an academic teaching hospital and a regional referral center, patients travel from across the United States—and, occasionally, the world—for treatment here. Some come for liver transplants or to enroll in a clinical trial for metastatic lung cancer. They are among the sickest and most complex patients I’ve ever encountered, suffering from the rarest sarcoma, recovering from risky surgical replacement of a heart valve. And many are quite young; there are weeks when the oldest patient I see is fifty years old. There are other weeks when the majority of my patients are in their twenties and thirties. Their hopes for a fix or a cure are palpable. They believe we can offer them miracles. In this milieu, some of my colleagues remarked that calling a palliative care consultation could feel like giving up on a patient, crushing their long-held hopes. I could only see those patients referred to me by my colleagues, who in turn supervised the teams of residents and fellows rounding on patients each day. Though I’d returned to a university hoping to teach medical students and doctors in training, I realized quickly that the most important—and unexpected—audience was my peers. I would have to find a way to teach palliative care and its value to surgeons, oncologists, cardiologists, and an array of other physicians who might have had minimal exposure to the field in their training and practice.
I joined a palliative care team that at first consisted of me, a social worker named John, and a coordinator named George. Formed just two years before my arrival, our team was young and busy. Together, John and I saw around seven hundred patients in my first year, walking together between Keck and Norris, reflecting on the many sorrows we witnessed, laughing at the surprising moments of levity we also took in.
John, George, and I quickly became friends. Light poured into our office window, through which we enjoyed a view of a grove of trees and a small park across the street from the hospital. John brought in doughnuts for special occasions, always careful to include the ones that George and I liked best. On days when we saw especially challenging patients—those with difficult-to-control symptoms, others struggling with fear, anger, acceptance—we would go out to lunch at a local Mediterranean place and debrief. We laughed at celebrity gossip and bemoaned local and national politics. In an homage to a rap song that John loved, we adopted a panda as our team mascot. Despite the transience that remained a part of my work—the comings and goings of patients, residents, and attendings—our team, a comforting constant, anchored me.
Just over a year after I joined, fellows in oncology and intensive care medicine joined our team for two-week stretches, learning how to lead discussions with patients and families about their goals and reviewing the best ways to treat bothersome symptoms. Around my two-y
ear anniversary, our team began to host and teach fourth-year medical students as well. One of them, Adrian, Gonzales, emailed me shortly after participating in a family meeting for a patient he cared for who was dying of heart failure. “You and your team were consulted on a patient of ours,” he wrote in his email. The patient came to mind as I read his note. He’d been in his sixties, a stargazer who was looking forward to the solar eclipse just a few days away. But his heart started to fail for reasons we never determined, and he’d been in the ICU for more than a month, repeatedly requiring the support of a ventilator and continuous dialysis. In the meeting, we had to discuss the ways that our best treatments simply weren’t working; his family agreed that he would want only peace and comfort under the circumstances. I talked them through how we would undo the breathing tube and dialysis, how we’d give him medicines to prevent pain and difficulty breathing, how he’d likely be with us for only minutes after the breathing tube was removed. He died two days later, his family surrounding him in his ICU room.
“It was a very difficult and emotional experience for me that has really stuck with me the last week but it was a very valuable experience,” Adrian wrote in his email. “I had not, up to that point in my medical career, had to have a conversation with a family like that.” Adrian wanted to observe more of those conversations, in hopes of learning how to have one himself. He began his rotation a few weeks later, seven and a half years after I’d watched Dr. McCormick speak to Donna in a way that split my heart wide open.
* * *
Jared Douglas was one of a small handful of patients I’d seen in oncology clinic. He struggled with pain from a particularly aggressive form of kidney cancer, one that had spread to the bones of his legs and arms and to his spine. On his most recent CT scan, tiny holes dotted the ordinarily smooth surfaces of his bones, rendering them prone to fractures. “He’s been managing on a few Norco tablets each day, but his wife tells me he’s still in a lot of pain so I wanted him to see you,” Dr. O’Brien, his oncologist, told me over the phone. “You should probably also know that he’s on his fourth line of treatment,” he added, “and I’m not sure how much progress we are going to make.”
“Have you discussed that with him?” I asked.
“I’ve tried, but his wife is really reluctant to talk about that word, ‘hospice,’ and they both seem to want to keep fighting,” he said. “But if you can talk about that with them, I think they would appreciate hearing it from you.”
When I first met Jared and his wife, Sylvia, he was sitting upright at the edge of the clinic exam table, swinging his legs rhythmically as though he were an excited young boy. He had a mane of brown hair, green eyes, and deep wrinkles around his eyes and mouth. His voice had a melodic cadence to it, and he appeared remarkably peaceful despite his circumstances. “Taking these medications makes me nervous, Doctor,” he told me. “But I know that I have to try.”
I asked him what his pain prevented him from doing. He told me he could still dress and bathe himself, but had to use a walker to get around, and lacked the energy to go on outings with Sylvia. “It’s been a real shock to need a walker,” he told me. “Not being able to walk around on my own has been a real blow.” We talked about whether he’d be willing to try a small dose of strong pain medication to see if that might lessen his use of the walker.
“Can I stop the medicine if it’s making me feel weird?” he asked. Of course, I told him. And if the combination of medications and physical therapy I suggested didn’t help him sufficiently, then we would change them around. “Controlling your pain is a really important way to help you enjoy life,” I told him gently. “The objective is not to keep you sleeping in a bed, but to find the right combination of medications to keep you doing the things you love.”
I asked what his oncologist had discussed with him about his cancer and its treatment. Sylvia grimaced at the question. “Well, I’ve gotten several types of chemotherapy and radiation, and right now we’re trying a pill that I hope will work.”
This was the type of moment in conversations when I had to decide whether and how to probe a patient’s answer. Especially over the last year, I’d become more sure of the structure and language of my conversations with patients, and could tend a bit more to the emotion underlying their words and body language. Mr. Douglas’s tone of voice was even, and his body language appeared open rather than defensive and closed off. I decided to proceed.
“What has your oncologist told you to expect if the pill works?” I asked.
“Well, to be honest, he hasn’t been too clear. All I know is that since I’ve been taking the pill he says my blood tests look better, but I haven’t been feeling better,” he told me. Sylvia cut in. “We’re hoping that the pill will work,” she said firmly, looking at him. I could sense that this wasn’t a topic Jared and Sylvia had openly discussed, and I was wary of forcing a conversation that neither person might be prepared for. I considered wrapping up the brief discussion by encouraging them to talk together about Jared’s expectations of treatment and his hopes if treatment didn’t work for him. But Jared spoke instead.
“But for me, I’ll tell you that quality of life is the most important thing,” he continued. “If I’m so sick that I’m sitting in bed all day and can’t do anything for myself, then I wouldn’t want that kind of life.” Sylvia looked away. He looked over at her. “I know it’s hard, honey, but that is my honest opinion.”
Because he’d brought up quality of life, I asked Jared to tell me what that meant to him. He’d clearly thought it through. He wanted to spend his time as active and independent as he could be, and did not want to end up bed bound. He wanted to spend his time at home with his wife and dogs; he dreaded the hospital and wanted to minimize his time there. If his heart stopped, he wouldn’t want to undergo resuscitation. Not only did it sound violent to him, he knew that it wouldn’t ultimately fix his cancer and he simply wanted a peaceful exit from this world. He didn’t want to be placed on a ventilator at the end of his life, and also wouldn’t want artificial nutrition through his veins or through a tube in his stomach. He’d be okay with antibiotics and gentle fluids to treat an infection if he had one, but that was it. “No machines,” he told me. “I want as long as I’ve got to live, but only if it’s a good life.”
I could tell that he meant every word.
I hadn’t expected such a detailed conversation. And because of the dense combination of sadness and surprise in the room, I didn’t bring up hospice. Jared knew that his disease had no cure, and he had a clear set of expectations from his chemotherapy: improved mobility and energy and independence. The clarity of his goals could guide all the decisions that lay ahead—up to and including the question of hospice. Jared’s responses had been so quick and thoughtful, so free of hesitation, it was as though he’d had the same conversation with himself and had been waiting to have it with someone else.
“Please call if the pain medications aren’t working or if you need to talk about anything we discussed,” I reassured them as they left. “And thanks for talking with me so openly. I know it couldn’t have been easy.”
“It was a pleasure, Doctor,” Jared said, extending his hand. “And we will definitely be in touch.” Sylvia forced a smile.
We wrapped up around lunchtime, and I headed first to the cafeteria and then to my office. It was late August, and the mood on campus was one of renewed energy and excitement at the start of a new school year. I squinted at the azure sky and felt the ninety-degree sun and thick, humid air press mercilessly upon me. I thought about my conversation with Jared and Sylvia, grateful that we’d had a chance to meet before a crisis, especially since it seemed that Jared hadn’t shared his wishes openly with Sylvia before our discussion. As difficult as it had been for Sylvia to hear Jared’s thoughts on his last days, I hoped she’d find some measure of relief in hearing his wishes directly from him. Had Jared ended up in the hospital, unconscious and unable to com
municate, I could envision Sylvia floundering to make sense of the crisis and also to serve as Jared’s decision maker in the absence of a conversation like the one we’d had. It still wouldn’t be easy for her to follow Jared’s instructions, but I hoped the memory of his own words would guide her to choose for him what he’d have chosen for himself.
And my gut told me that a crisis would come soon for Jared. I couldn’t always explain these flashes of intuition, and they weren’t always right. But there was something about the sharpness of his cheekbones and temples, the replacement of muscle with loose skin on his arms, a sense of his accelerating fatigue that nagged at me. And maybe it was also the fact that he’d declared his wishes decisively and quickly, free of hesitation. His clarity made me wonder if he knew he was dying and had made peace with his realization. On both a physical and spiritual level, Jared left me with the impression that his time was short.
* * *
Six weeks later, shortly after Adrian began his rotation with me, Jared came to the hospital in the throes of a pain crisis. Dr. O’Brien had called me earlier that morning to let me know that Jared’s pain control had improved substantially for several weeks, but suddenly worsened. He’d increased the doses of Jared’s pain medication nearly tenfold over the past week, to no effect. “I’d really appreciate it if you could see him,” Dr. O’Brien said. I promised I would.