by Sunita Puri
Dr. Frankel nodded deeply. “You’re absolutely right,” she said. “I love that I’m taking advice from a fellow, not an attending!” She laughed.
Sometimes, I was learning, I had to support my colleagues just as much as I support my patients.
* * *
Chris and Elaine sat next to Alice’s bed, watching her. Her eyes were bright, and someone had applied blush to her cheeks. I noticed that she wore pink lipstick; its imprint brightened a stretch of her breathing tube.
“Good morning, Alice,” I said, aiming for neutrality rather than sorrow. Chris fixed his eyes on her, and Elaine gave me a half smile and made room for me at the side of Alice’s bed. Alice beckoned me closer to her and I knelt, wondering if she was going to give me a hug. Instead, she tried to reach up for my long hair, which I had left down around my shoulders today instead of pulling it back into my usual bun. As I bent closer to her, with some strained effort she lifted first her left hand and then her right, touching the ends of my hair and then running her hands through the strands. I watched her eyes move in all directions, taking in my hair as though it were a novelty, closing her fingers around soft sections, trying to memorize their texture.
Letting go of my hair, she pointed to the photographs that hung above us, a makeshift mobile of photographs that Alice had requested: Alice at a bar with Chris. Alice and her aunts at the Golden Gate Bridge. Alice alone, wearing a dark tank top and smiling widely, her hair identical to mine. She fixed her eyes on the dangling photographs as though she were newly born rather than dying slowly, watching the most ordinary moments rotate above her, out of reach, in a still room with no breeze.
Looking at me, she wrote, haltingly and with great effort, I used to have hair like yours.
I smiled, confessing that usually my hair was pretty curly but today I’d flat-ironed it straight. She gave me a thumbs-up and nodded. I wondered if we could do anything to keep her more comfortable. I’d noticed her mouth was dry and cracked—could we moisten and clean it for her? We could always reapply the lipstick afterward.
Alice nodded and smiled. She shook her head when I asked her about pain and difficulty breathing, anxiety and fear. She pointed to something she’d written earlier and underlined and circled.
I want to be like sleeping beauty, she wrote. I am ready to fly!
* * *
We all learn how to do things to patients, but not how to undo them. There is a grace to learning how to place a breathing tube into a patient’s throat: the examination of the patient’s mouth and neck before placing the tube to choose the correct tube size and to make sure that broken teeth, dentures, or drapes of connective tissue don’t obscure the view of the windpipe. The nod to a nurse to push sedating medications into a patient’s vein. The glide of the breathing tube through the mouth and in between the visualized vocal cords, those delicate sinewy landmarks that confirm the tube is going where it should. Just the right amount of pressure inching the tube forward. The confidence to ask for assistance when you’re not sure if the tube is in the trachea and not the esophagus.
But undoing—removing the breathing tube when its purpose has been exhausted—often feels like an imperfect experience because it isn’t as carefully taught. Usually, we extubate patients because they can breathe on their own. But when we extubate a dying patient, what follows may be the final impressions a family will have of their loved one. Intubations are closely supervised, but extubations aren’t always.
“I’m begging you, I don’t want her to feel a thing,” Chris said to me outside her room after I first saw her that morning. “I can barely keep it together right now and if I see her in pain, I’ll never be able to live with myself.”
He began to weep, convulsing with sobs. A nearby nurse motioned toward the waiting room, which was empty and would be a much better place to talk. Elaine followed us.
“Can you tell us what exactly is going to happen?” Elaine asked. “Honestly, I think a couple other doctors have explained it but I just can’t remember. It’s . . . well, this is all pretty overwhelming.”
I nodded, wondering whether I would be able to hear the details of the extubation if I were in their position, or whether I’d want to remain blissfully ignorant, staying at my loved one’s side and pretending that I wasn’t really losing her.
“I will definitely walk you through it,” I said. “Our main goal at this point is to make sure that when we remove her breathing tube, Alice doesn’t suffer any shortness of breath or pain of any kind.” I paused. “The way that we do this is by giving her pain medication before we remove it.”
“Will she still be conscious?” Elaine wondered.
“You’re not putting her to sleep, right?” Chris said. “I want every precious moment I can have with her.”
“I totally understand. We will give her pain medication only if she has any discomfort. We will try our best for her to be awake and available to you, but sometimes people need more medications to be comfortable, and the medications can cause sleepiness.”
“How long do you . . . how long . . .” I could guess what Chris was trying to ask.
“Are you wondering how long Alice will be alive after we remove the tube?” I asked gently. He nodded, wiping his eyes. “Elaine, this can be hard information to hear. Are you okay with me sharing my thoughts?”
She nodded. “Yes,” she whispered. “I do and I don’t want to know, but we have to be prepared. We’ll tell the others all of the stuff you’re telling us now.”
They need your honesty, I reminded myself. They will lose her just once. “Alice has needed a lot of support from the ventilator,” I began. “And based on that, I think that she will likely be with us for minutes to possibly an hour or so after we remove the breathing tube.” This, too, was a sentence I’d had to practice.
They nodded. “I can’t believe this,” Chris said.
“No matter how much time she has, Chris, I promise you that we won’t let her suffer,” I said, telling myself to focus only on my words, not on the emotion of the room, lest it consume me.
I ordered all of the medications Alice would need and discussed the plan with Jackson. “This sucks,” he said, and I nodded in agreement. But was it worse than anchoring Alice’s body to a world it was trying to leave?
* * *
Though I’d wanted to be in the room when Alice was extubated, I wasn’t paged when it happened. When I went to see her, her bed was empty, the mobile and photographs and cards gone. “I thought someone had paged you!” her nurse said when I asked when Alice died. “She was gone in about twenty minutes.” By the time I arrived, Alice’s body had already been moved to the morgue.
Because I wasn’t in her room when she died, I tell myself that Alice didn’t feel any pain or have any difficulty breathing. That the last thing she felt was the love in the room, the love that was big and buoyant enough to grant her wish to fly. I stood in the space where Alice’s dialysis machine had been, in the few minutes before a janitor began to clean it. The room was finally, overwhelmingly, silent.
* * *
It will eventually become second nature to sit with a patient you barely know, a patient like Alice, and help them to understand that they are nearing the end of their lives. You tell yourself to push aside the awkwardness of essentially being a stranger to them, and talk to them as if you do know them. You are forced to a place of extreme intimacy, talking to them about the lives they have led up to this point, their fears and regrets, the people they love, the ways they have made sense of loss earlier in their lives, and how they are making sense of loss now, in the days or weeks or months they may have left to live. You must act as if it is normal for a doctor to ask these probing questions during the first or second meeting with them. Because if you act awkward, they will wonder why you are here, why you are asking about their pain and nausea and shortness of breath, about who makes their medical decisions if they no long
er can, about what they hope for, and whether those hopes are realistic. You remind yourself to listen to them carefully, to choose your words carefully, because one day you will be on the other side of this conversation, and you will long for someone to listen to you and choose their words carefully.
You will tell them how sorry you are that they are sick, that they have been in such distress, that they have to have a difficult conversation with you. You wonder if being a stranger actually helps you to say what the doctors they have known for a longer time cannot say. They will tell you they have never heard of palliative care. Is that hospice? they will ask, while telling you that they would never consider hospice because hospice means giving up. They try and fail to pronounce the word “palliative.” One will ask if you are from the primitive care team. Another will ask if you mean you are a paleontologist.
They tell you how humiliating it is to have gone through innumerable surgeries and rounds of chemotherapy only to be more familiar with their doctors’ hands than their lover’s hands. They tell you that because of their feeding tube, they haven’t tasted real food in more than three years, that they have forgotten the crunch of apples, the tang of oranges. They tell you that in three months, they plan to move to Oklahoma to be near their son; you wonder aloud if they have considered going sooner while trying to figure out how to tell them that three months—maybe even three weeks—is wishful thinking. They tell you that it isn’t fair that this is happening to them, because their spouse doesn’t deserve to be alone. They wipe their tears on T-shirts that say “Fight On!” or “Miracle” or “Fuck Cancer.” They tell you that they know someone who had stage IV cancer and was told by their doctor that they wouldn’t survive for six months, but it’s been six years and their friend is still alive, visiting them every day, telling them that doctors don’t know everything. They show you photos on their phones of themselves with their families on the beach, in the park, at a parade, in a café, and you sometimes have to blink back tears because you know that they are trying to say, “This is the real me! I’m going to be the real me again!” and you fear that cancer will claim their old and new selves, probably before the month is over. They wonder if death hurts, if they will suffocate or die from extreme, uncontrolled pain, but they stop mid-sentence and tell themselves that death is still a long way off, and they mustn’t worry themselves with those questions right now. You imagine that each of them wears a necklace of intricate, intersecting circles of loss, grief, anger, fear, sadness, regret. You visualize this necklace hanging at their throats, golden and glistening under the hospital’s fluorescent lights, in the moments when their expressions of emotion make you want to leave the room. This is a necklace that you choose to wear, too.
Some will tell you that everything you say is coming from a place of negativity, that they will be the miracle patient to prove you wrong. They tell you that you will never forget them, because they will show you how wrong you were.
You won’t ever forget them, you think to yourself, no matter whether they prove you wrong or not. You will pray for all of them. You will attend their funeral services, if invited, and place the program on your altar, next to an image of Lord Ganesha. You will ask Him to guide them on their way. You don’t tell them this, because you know that what they need more than anything is to search for hope in any way that they can, including by saying that they know they will prove you wrong.
There is no script, no training course, that can teach you how to sit in silence, how to listen to them. You either have a deep well of your own suffering—your own intersecting, interlocked circles of loss, grief, anger, fear, sadness, regret—to draw upon, or you have a well of suffering that you have not recognized or are not ready to draw upon. We all have our suffering. Whether you can use yours to connect to the suffering of another is a separate matter entirely.
You want to tell them that their bodies will die, but they won’t. That it is their bodies, not their spirits, that are finite, mortal. You want to tell them that you have had patients who have had near-death experiences, who have hovered above their bodies as medical teams performed CPR and experienced the purest joy and freedom they have ever known. You want to tell them that these people described freedom from their diseased bodies as being enveloped in pure, divine love, finally free of suffering. We never wanted to return to our earthly bodies, they tell you later.
You remind yourself that it isn’t your job to erase or to justify all of their suffering, but rather to see it, not ignore it. To ease it when you can. And to be there as they move through it, as it passes through like clouds in the sky.
Six
BELIEVE
I was a first-year medical student when my father experienced chest pain for the first time. I imagine that I was probably hunched over a study guide in San Francisco, reviewing how to interpret EKGs, when my father began his morning walk in Los Angeles. About thirty minutes into it, my father would tell me later, a stabbing sensation tore through his upper body, stopping him in his tracks. He struggled to breathe even as he stood still and hunched over, hands on his knees, eyes fixed on the grass below him. Nausea came and passed. The pain had arrived suddenly but dissipated slowly. He sat on the wet morning grass and wondered if maybe his acidity was flaring, or if he had pulled a muscle while pumping his arms as he strode up the steep hill leading to the park. After a few minutes, he took a deep, painless breath and stood up to walk home, deciding that this was probably not worth mentioning to my easily worried mother.
About a week later, another bout of chest pain interrupted my father’s sound sleep. He suddenly sat straight up, feeling as though a kebab skewer had been pushed through his chest, struggling again to breathe. Beads of sweat dotted his forehead. A wave of nausea overcame him and he squeezed his eyes shut, willing himself not to vomit on the plush brown carpet below. My mother stirred and then awoke, the sight of my father instantly provoking in her a doctorly response.
His pain lasted longer this time but eventually subsided, taking the nausea with it. My father refused to go to the ER in the middle of the night, but my mother made him promise to see a cardiologist, one of my mother’s colleagues, first thing in the morning. As my father walked on a treadmill in the cardiology clinic, the cardiologist closely monitored my father’s heart by examining a continuous EKG. Midway through the ten-minute test, he told my father to stop walking; the electrical pattern on the EKG revealed that the right side of my father’s heart was not getting enough blood, most likely because of blockage of one of the arteries feeding the right side of his heart. Had my father waited any longer to see a doctor, he might have died during his next morning walk.
Since I was in the midst of studying the heart and circulatory system, I knew more than I wanted to know about situations like my father’s, but this knowledge somehow vanished when my mother called me tearfully, telling me details about my father’s EKG, details that I suddenly couldn’t comprehend. Because it was my father’s abnormal EKG. I flew from San Francisco to Los Angeles immediately.
My brother and I accompanied my parents to the hospital, where my father would undergo a cardiac catheterization—a procedure in which a cardiologist would thread a thin, flexible tube from a blood vessel in my father’s upper leg all the way to his heart, enabling the blocked artery that caused his chest pain and nausea to be visualized and stented open. We huddled together with my mother as my father changed clothes. Tall and occasionally imposing, my father looked uncharacteristically frail in a pale blue hospital gown that masked his round belly and showcased his thin arms and chicken legs. He laughed at my mother’s nervous tears and the serious expression on my brother’s face: “What’s wrong with you two? You look like I’ve already died!” He fixed his gaze on my mother, barely flinching when the nurse placed an IV in each of his arms. “You all worry too much,” he said, shaking his head as my mother wiped her eyes on the sleeve of her white coat. My brother and I wrapped our arms around her. “This isn’t f
unny, Ashok!” she said, her voice muffled and broken.
My mother knew catheterization labs well because in the past she’d provided sedation to patients undergoing pacemaker placements and catheterizations. She had witnessed both the incredible power and the terrifying complications of attempts to fix broken hearts. Sometimes, a heart severely deprived of oxygen by multiple blocked blood vessels might stop before the blockages could be treated; other times, an artery might accidentally be torn by the advancing catheter and the patient would need to go to the operating room for an immediate repair. My mother would place such unstable patients on breathing machines and whisk them away to the ICU or the operating room, where, hopefully, they stabilized. She’d often walked by the nondescript waiting room outside the lab, where spouses and children and caretakers stared at the talk show du jour on the television overhead and leafed through dated, rumpled issues of People. But she had never sat there herself, trying to restrain her restless mind from wandering into the tricky territory of worst-case scenarios.
The cardiologist came by again, asking whether my father had any questions before his procedure. My father shrugged and said he had no questions, but my mother had one. “Can I tape this to his chest?” she asked, holding up the picture of Lord Ganesha that she usually kept in her wallet. The cardiologist smiled and put his hand on my mother’s shoulder. “Sure, Rita. No problem. But I want you to know that he is going to be totally fine,” he said softly.
Amid the uncertainty of everyday life, my mother relied on God. The cardiologist could quote endless statistics to convince my mother that my father’s procedure would go well, but what she needed was a blessing from beyond. “I know you will take good care of him, but I need God to take care of him, too. It’s okay if you think I’m crazy,” my mother replied, her voice unusually quiet. She looked so small to me then. Fear diminished my powerful, confident mother. I kissed the top of her head, which rested against my shoulder. My father laughed again. “Nothing is going to happen to me,” he said.