by Sunita Puri
“Hello again,” Charles says warmly when he answers the door. Dried bits of food cling to his shirt, and the circles under his eyes have deepened since I saw him last. The faint odor of cigarettes and singed potpourri fills the apartment. He leads us to Linda’s bedroom, where she rests underneath several blankets, her glasses still on her face, a large photograph of her son mounted on the wall above the bed. She hears my hello and lifts her head. “Doctor, can I walk out to the living room and we can talk there?” I nod yes. I have never seen Linda walk.
It takes her ten minutes and Charles’s full assistance to get up from her bed and hobble with a walker to a peach-colored couch just outside her bedroom. She positions herself carefully on plush bronze pillows and says to me, “I want to continue with my dialysis.”
“Yes, Linda, we talked about that on the phone a few days ago,” Chaplain Matthew says, leaning forward and angling his body to face her. “Can you tell Dr. Puri here what you told me about why you wanted to restart dialysis?”
“I think when I said before that I would stop it, I didn’t know . . . you know . . . that I actually felt better when I was on dialysis,” she says. “I think it was better for me when I was on it.”
Charles cuts in. “But you didn’t go to dialysis. You just skipped it when you wanted to. You know, I am tired. I am so tired. I am always here with her twenty-four hours a day, and it’s a struggle to go to the clinic to get my own medicines. The only times I could leave this house were when that hospice bath aide or nurse came by. I can’t afford a caregiver for even a quarter of that time and make the rent here. And her sisters don’t help!” He pauses, dropping his head in his hands. Charles’s frustration startles me; usually, he quietly attends to Linda’s needs and brushes aside the questions I ask about his own health and well-being.
“I just think I should try it one more time, you know,” Linda continues. “My sisters visited this weekend and said I was just giving up, like if I stop dialysis . . . you know . . . it’s like committing suicide.”
“That’s a heavy statement,” Matthew responds. “Do you remember how we talked about the idea that sometimes the body tires out even with all the treatments your doctors give you? And then it is perfectly all right to let go and let God. That’s not a sin and that’s not suicide.”
“Yes, I remember, Chaplain,” Linda says slowly. “But I just don’t think it’s my time. I’m not ready yet to die.” I think of my conversations with Dave, who would tell me he would know when it was time to let go, that he wasn’t ready to die. I wonder what it means to be ready to die, how people feel that they know.
Ordinarily, I’d try everything in my power to honor a patient’s wishes. But when I look at Linda, I struggle to understand how dialysis is even an option for her when she is so frail and debilitated. Going to dialysis takes her seven hours from the time she leaves her front door to the time she returns home in the evening, and has to be done three times a week. She returns home more exhausted and nauseated than when she left, and goes straight to bed. Dialysis might not add many more days to her life at this point, and it certainly didn’t seem to make her days better.
And if she continues dialysis, I wonder how Charles will manage without visits from the hospice team, which provide Charles with a few hours each week to see his own doctor, to buy groceries, to walk to the mall alone, and, for once, to think of anything but the weekly dialysis schedule. Frustration burns again within me, knowing that Linda’s health insurance will pay for dialysis but won’t reimburse Charles for a trained caregiver to help him care for her and for himself.
Linda is silent, picking at her skin. And then she asks, “What will happen if I don’t do dialysis anymore?”
I think back to medical school whenever I am asked this question, recalling the moment when Dr. McCormick spoke honestly to Donna and I listened. “I will do everything in my power to make sure that you are comfortable and totally free of any pain or nausea or difficulty breathing,” I tell her. “You will be here at home with Charles and we’ll keep you feeling as well as possible until God calls you home.”
“Okay, Doctor. Let me think about it,” she tells me before closing her eyes and sighing. Charles looks down at his clasped hands. Matthew and I glance at each other and then at Linda. Her eyes have partially closed, and she has bent over to rest her head on the arm of the sofa. I wondered about the first time Charles watched Linda sleeping, long before his white hair and dark circles, before cocaine and dialysis and the death of their son, when the focus of his attention wasn’t her breathing pattern or whether his neighbors were available to help him get her from their porch to the dialysis transport van. How he must have looked at her and imagined all the ways his life was about to widen and stretch and expand, how this beautiful woman sharing his name and his home would reconfigure the plans he’d always assumed he’d take on alone, making room for new ones he’d likely never imagined possible.
Before I leave, I notice an old photograph of Charles and Linda out to dinner somewhere, she in a black dress and a silver necklace and he smiling widely in a tuxedo, both barely recognizable now, in a frame engraved with the word “FOREVER.”
* * *
When I return to my car, I take a big sip of water and exhale. I look at my phone and dread picking it up, but I know that I need to call to discuss Linda’s situation with her nephrologist, Dr. Cartwright. Preparing for conversations with colleagues sometimes takes me more time and emotional energy than conversations with patients and families. Sometimes, I have to reassure them that I don’t have a hidden agenda to force patients onto hospice or to convince them that chemotherapy or surgery isn’t worth it. This isn’t a burden that other specialists face. And in the moments when the realities of my role weigh heavily on my mind, I remind myself that the short-term frustration will eventually give way to seeing more patients in the long term. After all, I’d signed up not just for medical practice, but also for cultural change within the field.
As I dial Dr. Cartwright’s number, I rehearse my words carefully. He answers on the third ring.
“Hi, Dr. Cartwright, this is Dr. Puri from palliative care. Do you have a second to chat about a patient of yours that I just saw?”
“Yes, yes, sure, which one? I have only a few minutes because I am in clinic,” he replies, and I can hear the clickety-clack of a keyboard beneath his phone. He is probably multitasking, typing in notes and orders for other patients as he talks to me about Linda. He is pressed for time, and I know that I will need to be brief.
“Thanks so much. I just saw Linda at her apartment and wanted to touch base with you about how she is doing. Have you seen her lately?” I ask, secretly hoping that he will be the one to say Linda shouldn’t get dialysis anymore.
“No, she didn’t show up for dialysis twice last week. But that’s pretty normal for her. How is she doing?”
“She isn’t doing well. She sleeps most of the day and needs two or three people to help her get up and around. We discussed the possibility of stopping dialysis and going back onto hospice.”
He remains silent, and I tell myself to be confident and precise as I continue. “Based on how she is doing, I am concerned that continuing dialysis may not help her to regain function or become stronger, even though that’s what she might expect. I’m worried that dialysis may instead cause her to become weaker. I’m not seeing how it’s helping her right now.” There is a fine line between communicating my disagreement with Dr. Cartwright and giving him the impression that I question his judgment. I hear him continuing to type for a few seconds before he speaks.
“Well, of course dialysis helps her if she shows up. I’m not sure I understand what you are saying,” he says.
Don’t get nervous, I tell myself. “She is very afraid of dying, which is completely understandable. But I think she will die soon regardless of whether we continue dialysis or not. And maybe now is the time to tell her that dia
lysis doesn’t seem to be helping her, and it is okay to stop dialysis and just focus on her spending her time at home with her husband.”
“Sure, but this has been going on for a long time, you see,” Dr. Cartwright says. “I’ve seen her say she wants to stop and then she wants to start, and the cycle just repeats. It’s been two years now, and she’s still alive.”
“This is true,” I say.
I hear Dr. Cartwright tell a nurse that he’s going to run about ten minutes late. “Look, if she wants to continue dialysis and not do hospice, then I cannot stop her,” he says. “I’m not going to be the one to stop dialysis. She needs to tell me when she’s had enough. I’ve told her that she really has to commit to coming to dialysis three times a week to see the benefit of it.”
I want to ask Dr. Cartwright to help me understand his perspective. But the hardening edge in his voice cautions me. “Okay,” I say, struggling to sound genuine. “I can continue to see her and just make sure she’s feeling as well as I can get her to feel, regardless of whether she chooses to continue dialysis.” I remind myself that alienating Dr. Cartwright may stop him from referring other patients in need.
“Yes, of course! I know she enjoys your visits and you do a good job with her nausea. So please keep visiting and we can talk again.”
“Thanks so much for your time, Dr. Cartwright. I’ll keep you posted.” I hang up the phone and hit my steering wheel, accidentally honking the horn. “And fuck you!” I scream. My head throbs, and I massage my temples, leaning back into my seat for a few minutes before I start my car and begin to drive home.
My friends who aren’t doctors ask me how I can deal with being around dying patients all the time. My friends who are doctors ask how I deal with the doctors whose patients are dying. As I drive away, I remind myself of the wise words that both Dr. Nguyen and my mother shared with me: Pick your battles.
* * *
I try not to think as I drive home, distracting myself with a mindless mix of pop music. But eventually my mind drifts back to my conversations with Linda and Maria, Barbara and Dr. Cartwright. Had I helped my patients today? I wonder. Had I been the doctor they needed me to be? I think back to the very first time I asked myself this question, when I had been a doctor for just six months and wondered what sort of doctor Mr. Tan needed me to be for him, what it meant to be a good doctor to a vulnerable patient like him.
What does it mean to be good at this work? I wonder as my car crawls along in rush-hour traffic. Would a better doctor have persuaded Linda to stop dialysis, or Dr. Cartwright to recommend hospice to her? Would I have better served Ms. Stevenson by convincing Barbara that she’d need to find a way to pay for a nursing home to care for her? Was Barbara also my patient in a way? What did it mean to advocate for Maria and Sergio in a health-care system that couldn’t provide them with the caregiver they both needed?
Maybe doing this work well means continuing to show up for Linda and Sergio, Mr. Fryer and Ms. Stevenson. Perhaps being good to them means seeing them, not just the circumstances of their lives, and listening as they tell me how they want to be seen. I think of Sergio sharing his photograph album with me, Linda showing me that she can walk, Mr. Fryer holding his red sweater up and describing how wearing it makes him feel like a normal human being, not a patient. I’ve often heard and read that people who are dying can teach us what is really important in life, and what it means to live fully. But though my patients are dying, part of what it means to see them is acknowledging the many ways that they are still trying to live. Some are preoccupied with paying bills, still bickering with their spouses, still buying cocaine or clipping coupons for milk and produce. Dying hasn’t bestowed upon them the meaning of life or turned them into embodiments of enlightenment; dying is simply a continuation of living this messy, temporary life, humanly and imperfectly. And even as they struggle and stumble, each of my patients offers a vivid lesson in accepting inexplicable circumstances and choosing to live the best they can. I can see their wisdom and dignity and strength, all of which are not things hospice can provide. Wisdom and dignity and strength have nothing to do with Linda’s income or whether or not Ms. Stevenson had a family. Yet they are perhaps the most essential components of the very private, internal process of making peace with life as part of the process of dying. Maybe this is the meaning of these visits, of the visits that preceded them and all the visits that await. Your patients are showing you that dying is still living, I tell myself as I stop at another red light, hoping that I will remember this tomorrow when I get up to do this imperfect work once again.
And in death, as in life, seeing and appreciating the magnitude of the smallest things was crucial: Halting the pain if not the cancer. Placing mittens on Ms. Stevenson’s hands. Finding a hospice volunteer to sit with Sergio as Maria buys groceries. Seeing the commonalities of our last days, no matter how much money or love or family or years of life we have or don’t have. This doesn’t excuse the many ways that we must improve hospice and expand its ability to care for patients in a multitude of circumstances like Ms. Stevenson’s or Linda’s. But because I know it will take years to improve hospice services in our country, is it possible to remember the successes alongside the endless number of formidable challenges my patients and I face together?
The picture of Mr. Fryer comes to mind. I feel the urge to look at it immediately.
I pull into the next plaza on my right and park in front of a doughnut shop. I open the photograph and see Mr. Fryer looking at me, a Dodgers hat covering the patches of hair that remain. He is indeed wearing his red sweater, and if I hadn’t known him, I might have thought he was just a proud relative of a young graduate, not a man dying of a cancer his doctor had discovered just ten months ago, a cancer that could be treated only with chemotherapy that destroyed his taste buds and caused uncontrollable vomiting, leaving him largely confined to his bed for weeks. His granddaughter, clad in her graduation robe and cap, had her arms around him, her wide smile identical to his. She’d tied bunches of red and white balloons, which matched her high school’s colors, around his wheelchair arms. He looked just like any other proud grandfather. Such a small goal, but enormous to him. It was exactly how he’d wanted to be seen.
Ten
FIGHT
Around December of my freshman year in high school, I stopped eating. Experimenting with various diets was practically a rite of passage for teenagers in Southern California, and as I’d watched my best friend shed ten pounds in the span of three weeks, I, too, thought I could change my body through sheer will. If I fought hard enough to lose weight, I would. In June, I cut out snacks. No more mini chocolate chip muffins or string cheese. In a month, five pounds vanished. In late July, I stopped eating lunch, substituting carrot sticks and a banana. Eight additional pounds vanished, and I began my sophomore year in September with classmates congratulating me on how great I looked. Each lunchtime, I threw away the peanut butter sandwiches my father made every morning before dropping me off at school. I could hook all five fingers into the new craters behind my collarbones, and often ran my index finger along their newly apparent edges. Angular cheekbones announced themselves. My jeans’ waistband no longer left a pink indentation on my belly after I sat down for lunch or went to the movies. I could see the intersecting map of my blue-green veins across my hip bones, rivers against newly prominent hills.
By early winter, I’d found a way to sit at the dinner table, chew a minuscule amount of my mother’s cooking, and strategically spit it out clandestinely into a napkin I clutched because “I had a cold.” By January, I had lost thirty pounds.
My mother yelled and cried, in rage and in sadness, as my father grew quiet. As she’d watched me shrink, she had initially worried that I had cancer, and took me to my pediatrician almost every two weeks. My pediatrician ran a battery of tests and reassured us both that I didn’t have cancer or an overly active thyroid. I wasn’t using cocaine or speed. She suggested inst
ead that maybe I had “a mental issue” that was leading me to believe I shouldn’t eat. My mother was aghast. She had never heard of anyone who willfully stopped eating. She reminded me that she and my father never knew where their meals were coming from as children, that I was selfish and stupid for shunning food. At that point, on the advice of my pediatrician, my mother took me to a nutritionist (an appointment, she’d told me, that only diabetics and overweight people should need) and then, despite her shame, to a therapist. As far as I could tell, my father tried to maintain a semblance of normalcy. He spoke to me as if he noticed nothing wrong, asking me about my grades, handing me a bagged lunch with a sandwich and a banana and pretzels every morning, indulging my request to drop me off a few blocks from school in the morning so that I could “walk the rest of the way and get a little exercise.” Instead of walking, I ran those blocks, my purple backpack stuffed with the heaviest of my textbooks, so that I would burn more calories. My father would tell me later that he’d never been so afraid to speak to someone. Saying the wrong thing to me, he worried, might worsen my seemingly steadfast commitment to destroying myself. So he pretended that nothing was wrong, until one morning he couldn’t.
