That Good Night

by Sunita Puri

  I wanted so badly to reassure Alice that we would get her home soon, healthy and recovered. But to do so would have been irresponsible. I had to measure my words carefully and with close attention to their effect, just like I titrated the doses of medication to get someone’s blood pressure to the right number. But I could generally predict how a person’s physiology would respond to a given blood pressure medication—which ones to avoid because the patient had kidney disease, which ones to give because the patient had heart disease. Choosing the right words, however, required some knowledge—or at least a somewhat informed impression—of a patient’s psychology, a formidable task when I’d just recently met a patient. No matter how well I thought I knew a patient and family, and how accurately I might be able to anticipate their emotional response to a difficult situation, the mind and heart could be wild beasts, capable of interpreting the kindest gesture as the greatest threat. I had taught myself how to recognize emotional recoil, how to step back and allow the smoke to be seen as a signal, a notice, not always a sign of fire.

  I explained that getting her home was the goal, but she couldn’t leave the ICU if she needed help from the ventilator and dialysis machine. I asked her if she understood why she needed to be on the ventilator. Because I can’t breathe, she wrote, and I tried my question again, asking for more specifics.

  “That’s right,” I said. “What have the ICU doctors told you about the reasons you can’t breathe?” It would be one thing if she were an otherwise healthy person who couldn’t breathe because of a treatable pneumonia. It was another thing entirely that the infection in her lungs and the lymphoma in her blood grew stronger every day.

  Lymphoma, she wrote.

  I nodded and spoke slowly. “The lymphoma has made your lungs vulnerable to a very aggressive pneumonia. What we are trying to do is give you the right medications to help your body fight the pneumonia, and support your lungs with the breathing machine.” She nodded.

  I took a deep breath, readying myself for the harder part of the conversation, the part that I wish she didn’t have to hear from a near-total stranger.

  “Here’s the thing about the tube, Alice,” I started. “I think of it as a bridge from a bad situation to a better situation, a kind of temporary support for your lungs while they heal. We always want to take the tube out as soon as we can.”

  She nodded, her neutral expression unwavering.

  “We are worried that we haven’t been able to take the tube out for you yet,” I said softly. “I imagine that worries you, too.”

  Alice nodded. Yes, she wrote. I worry it won’t come out. We sat together silently as Alice played with her pen, drawing around the content of our conversation. More stars. A few trees. A cat.

  I want to go home, she wrote, circling and underlying her sentence. I want to sleep in my bed. I want my dog. I want this tube OUT. She wasn’t asking to be cured, or to be kept alive at all costs. She was asking for the most ordinary things. But our extraordinary technologies couldn’t enable her to enjoy the most ordinary things. I felt cruel for asking her about wishes that I couldn’t help fulfill.

  I resisted my urge to respond right away with reassurances and platitudes. Alice closed her eyes and leaned back into her pillow. Her warm breath fogged the breathing tube and then vanished as the ventilator hummed and hissed, hummed and hissed.

  “I wish that I could make all of those things happen for you right now,” I said softly, meaning every word. Alice nodded, her eyes closed.

  She pointed to her head and wrote that she had a headache and wanted to rest. Could I give her something for the pain?

  Of course, I said quickly, secretly grateful that our conversation was drawing to a close. Had it continued, I feared she would have asked me questions I wasn’t sure I could answer, questions about what would happen if she couldn’t come off the ventilator, or whether she could go home with the ventilator. I asked her nurse to give her pain medicine, and told Alice I’d be back to see her in the morning. She nodded, her eyes still closed. I wondered what she was thinking and feeling. I wondered what I would think and feel if someone had this same conversation with me.

  * * *

  Alice was one of the twelve new patients I met that week.

  Joseph was a painfully thin man dying of lung cancer. He wanted to go home, a request his family wanted to support but couldn’t. “I’m just really nervous that my sister and mom and I have no experience giving him the kind of care he needs,” his teenage son told me outside his father’s hospital room. “He’s so fragile, like a glass I don’t want to break.” When Joseph asked me when he would get to go home, I couldn’t bring myself to tell him what his son had told me. “Hopefully soon,” I’d say.

  There was Grace, a woman in her forties with breast cancer. Her twelve-year-old son snuggled next to her in her narrow hospital bed, begging her to stop screaming in pain. I’d stay in her room sometimes for an hour at a time, changing around her medications and doses until she could finally talk to him without wincing. There was Maria, whose constant nausea stemmed from an aggressive stomach cancer that had invaded her entire abdominal cavity and marched forth into her lungs. She took my hand every time I saw her and asked me to help her go to sleep. “Por favor,” she pleaded, “quiero dormir.” Her voice was desperate and exhausted. She would rather die than live miserably until death came for her.

  One night, I dreamed that Maria was pounding on my apartment door, begging for mercy. I awoke drenched in sweat, panting. I turned on the porch light and looked outside my window. Nobody was there.

  * * *

  That weekend, my brother came to visit me. Since he’d been in medical school himself over the past three years, we saw each other only sporadically, mostly on the few holidays that both of us happened not to be at the hospital. But we texted often; he sent me funny videos of cats chasing laser pointers and pictures of obese gerbils getting stuck between the spokes of hamster wheels, things he knew would make me laugh. When he found out he’d have a whole weekend off toward the end of July, he decided to drive down from UC Davis for the weekend. We became our high school selves together, eating, laughing, and mercilessly teasing each other. He pestered me about the lack of decorations in my new apartment (“I’m only here for a year!” I protested) and wondered why I didn’t just buy a bigger bookshelf instead of hoarding my books on the left side of my bed. “Why are you reading these?” he asked, holding up my copy of He’s Just Not That into You and a glossy celebrity gossip magazine. “Because I basically need to turn off my brain,” I said, blushing at his discovery. It somehow made sense for me to cap off my day by reading about anything and everything that bore no resemblance to my work or patients. “How does Halle Berry still look so good?” he wondered as he leafed through the magazine.

  We walked to a Japanese restaurant a block from my apartment and had steaming bowls of ramen. We meandered up and down the tiled stretch of downtown Burlingame and ducked into the bookstore, where we read other gossip magazines together. That evening, we picked up a takeout pizza and decided to watch a movie at my apartment. “We are so not cool,” my brother said as he opened the steaming cardboard box. “It’s Saturday night and instead of going to San Francisco we are sitting on our asses eating pizza and watching The Joy Luck Club!” We both laughed hard, and I nearly choked on my first bite.

  We’d watched this movie many times since high school, and usually laughed at the overly dramatic stretches that seemed implausible. But as the early part of the movie unfolded, I began to cry when I’d otherwise have laughed. It was the first time I’d cried in months. I put my half-eaten pizza slice on my plate and trembled under the blanket I’d wrapped around myself.

  My brother, meanwhile, was laughing and hadn’t noticed my tears. “This is soooooooo unrealistic!” he said, turning to me and then putting his own pizza down. “What’s wrong?” he asked, pausing the movie and turning to me.

&
nbsp; I thought I didn’t know, but I did. There was something about watching the main character in this movie go about her life shortly after losing her mother that pierced all the insulation I thought I’d put up between my patients and me. I thought I’d sublimated the twinges of sadness I felt by throwing myself into diminishing their discomfort, talking them through the unthinkable. I thought of Grace and the pain that persisted despite my desperate attempts to control it, the nausea that Maria couldn’t escape. Alice’s limbo. This rotation can be intense, so be sure you have some way to let off steam. My brother put his arm around me and leaned his head on my shoulder.

  “Work is hard,” I managed to say. I hadn’t let myself feel anything about the patients I saw every day, or the intense and layered pain that consumed them. It was one thing to know intellectually that I’d be around death all the time. But it was another to be immersed in the enormity of the final experience all human beings would share. What have I gotten myself into? I thought in the brief pause between one wave of tears and another. Am I in over my head? Somehow, watching a movie about a daughter grieving the recent loss of her mother pushed me out of my head, away from the script I read from to comfort myself: Life is temporary. Suffering is far worse than death. Death can be beautiful, just like birth. I’d often criticized the common perception that doctors could be superhuman, capable of curing the impossible. But in these first weeks of fellowship, I realized I’d expected myself to be superhuman—to embody a certain peace with death so that my patients could more easily find their own peace. What my patients needed was not only my expertise and professionalism, but also my humanity. And perhaps that meant embracing life’s impermanence but also allowing myself to be just as scared and overwhelmed by death as my patients were. Trying to be Ms. Socrates hadn’t worked. I sobbed then for all of the people I couldn’t sob in front of. I reminded myself that I wasn’t a doctor right now. That, in order to go back to work and be a doctor, I had to let myself grieve, grapple with what it meant to lose a thirty-six-year-old to colon cancer, to care for a woman who would rather take her own life than live another day with nausea.

  “Auntie Lindo!” my brother exclaimed, a goofy smile on his face, forcing some laughter out of me. We both thought Auntie Lindo was the most complicated character in the movie, one who both compelled and annoyed us. “You have a hard job,” he acknowledged. “What you see every day is not normal.” I smothered my face with a tissue. My brother reached over to pick a few strands of stray tissue out of my eyelashes.

  “I have an idea. Let’s watch Mean Girls!” he said, his eyes lighting up mischievously.

  “Yes!” I exclaimed. “We haven’t watched that in forever.” I yawned; crying had relaxed me, left me lighter. My brother changed out one DVD for the other, and we both returned to our pizza in my small dark apartment.

  * * *

  Alice had gotten worse over the weekend. Her blood pressure dropped so low that continuing dialysis was becoming dangerous. She was just as dependent as she’d always been on the ventilator.

  On Monday morning, eight people circled around Alice’s bed—her family, Dr. Frankel, Jackson, and me. Dr. Frankel began the meeting with an update. “When we met a few days ago, we had talked about our goal of trying to see if Alice could get well enough to come off the ventilator and dialysis,” she said gently. “Unfortunately, we have not been able to meet those goals. And we are dealing with new problems, like the fact that you can’t move your legs,” she continued, looking at Alice.

  “Hey, we don’t want to just hear all the bad news,” Chris said, shaking his head. “We need positivity right now so that Alice can heal and get better. So what’s the positive news?”

  “I wish we had more positive news to share,” Dr. Frankel said, “but I’m afraid that we are just seeing Alice get sicker.”

  “You have to listen to them,” Elaine said to him. “They are trying to help.”

  “Babe, what do you think?” Chris said, turning to Alice.

  Over the span of a few minutes, Alice slowly scribbled down her thoughts. She thought she was getting worse. She still couldn’t eat or drink. She couldn’t talk. The breathing tube made her want to throw up. How much longer would she need it?

  “I want to tell you something that is going to be difficult to hear,” Dr. Frankel began. “It’s not looking like we will ever be able to get you off the breathing machine. I think you are too sick to live without the machine,” she said, pausing. “But I also think that you might be too sick to live even with the machine.” Alice closed her eyes. Chris drew in a sharp breath and looked at the ground.

  “I am very worried about what is happening to you, Alice. And I am especially worried that you are getting so sick that your heart could stop,” she continued. “And when that happens, I do not think you would make it through CPR, that procedure when we come in and press on your chest and sometimes shock you to jump-start your heart,” she said, acting out chest compressions as she described them. “But sometimes people want us to try that for them. What do you want?”

  I winced internally, hoping that Alice would say no, thinking of the times I had been the one to perform chest compressions on patients like Alice at the end of their lives. They should have been allowed to die peacefully, not with my hands pumping their chest a hundred times a minute as another doctor yelled for a crash cart while yet another doctor screamed out the results of lab tests that only confirmed they were dying. Say no, I thought to her, hoping that somehow she would hear and heed me.

  Alice shook her head. “Are you saying you wouldn’t want that?” Dr. Frankel clarified.

  No, Alice wrote, I don’t want that.

  “I don’t think she’s thinking straight,” Chris said, shaking his head. “I think this is all scaring her too much, the way you’re all standing around her and talking to her. Baby, you want to live, right? You don’t want to give up!”

  Alice looked at Chris and shook her head slowly. Like this? she wrote, underlining her words forcefully. She lay still, and then angrily stabbed her bed with the pen. It was probably as close as she could get to screaming.

  “We all want her to live,” I said carefully, “but we also want her to have quality of life and as little discomfort as possible if we can’t give her more time.” Alice nodded as I spoke. Quality, she wrote, circling it.

  “I’ve got to get some air,” Chris said. He opened the sliding glass door and left quickly. Elaine followed him.

  Alice looked at Dr. Frankel and then at me, pointing to what she had written.

  * * *

  When I went to see Alice the following morning, she reached for her clipboard and pointed to a sentence she’d written for her nurse an hour ago. I don’t want this anymore. She pointed at her tube when I looked at her after I read her scrawl. No more tube.

  I hadn’t expected her to have made a decision. “Tell me more,” I asked, trying to understand it.

  They can’t fix me, she wrote. She shrugged, and began to cry. Her arms had become weaker, and she struggled to lift her hands to wipe her eyes. I grabbed tissues from her bedside and dabbed her cheeks and eyes gently. I tucked dampened strands of her hair behind her ears and held her hand, letting her squeeze mine as hard as she cried. I fought every impulse to tell her not to cry. I remained silent.

  Her tears slowed, and she reached again for her pen. I am not afraid, she scribbled. She circled and underlined her words, and looked me straight in the eye. I nodded. The quiet that followed wasn’t silence. I could hear the whir of her dialysis machine, the ding of the ventilator when she tried to cough, the beeping of an IV pump that had run out of medication.

  “Have you shared your thoughts with your family?” I asked, and she nodded. Tube out tomorrow, she wrote, circling it. Her family knew this, too. She reached for my hand and squeezed it lightly. Thank you, she wrote, drawing a wobbly smiley face next to her words. She placed her pen down o
n her clipboard, where it rolled to a stop on the lower part of her torso, somewhere between an abdominal drain and her urinary catheter.

  * * *

  Tomorrow came, and I spoke with Jackson and Dr. Frankel to confirm the plan. They had already updated the other doctors involved in Alice’s care, most of whom agreed that at this point all treatment options had really been exhausted. None of this made the situation easier.

  “You know, I just keep thinking about whether we missed something earlier, or maybe if we’d started the antifungals sooner, she would have had a fighting chance.” Dr. Frankel’s voice trailed off, and Jackson nodded in agreement.

  “I’ve been thinking a lot about this,” I said slowly, “and I think that because you worked so hard for her, she’s had this time when she’s been awake enough to communicate with her family and hasn’t been in much pain at all. She had this time with her family because of you.” I could sense that Dr. Frankel and Jackson believed they failed Alice, when in fact they had succeeded in remarkable ways.

  “And,” I added, “she was awake enough to tell us herself that she didn’t want to keep going. That decision didn’t have to be made by her family. As awful as this whole situation is, at least she could be the one to tell us she’s ready to go.”

  Jackson twirled his pen and nodded. “That’s so true. I think the family would have felt really guilty for a long time if they had to make this call.”

  Dr. Frankel added, “You would think after all these years I’ve been doing this job that these situations might be a little easier for me. I should be able to know that it’s okay and important to be able to let Alice go, but it’s still so tough.”

  “And that means that you still care so much,” I said. “It’s a tall order for us to somehow get used to these situations and yet to still care about each one. But it would be weird if losing patients somehow became easy.” I spoke the words I told myself the night before as I tried to reconcile the fact of Alice’s dying with the emotions it stirred.