That Good Night

by Sunita Puri

  I stand outside Maddy’s door at first, noticing a certain type of chaos unfolding, the type that begins when a patient’s blood pressure is dropping and her breath becomes shallow, her consciousness slipping away. Maddy is thin and jaundiced, her brown eyes open but blank, faraway. She has one tube draining green bile from her abdomen and another collecting brown-red urine. Respiratory therapists and nurses are gathered around her bed and a young man with bright blue eyes and a mop of dirty blond hair rushes past me with a central line kit under his arm. Her blood pressure cuff, which automatically cycles every few minutes, hums in the background while all of us await its red-numbered verdict.

  89/54. A series of red blinks and a warning alarm. Her oxygen saturation on the monitor also blinks: 88 percent.

  Blue Eyes surveys the situation and speaks: “Dr. Lee called for me to put in a line.”

  I respond. “She also asked me to stop by to see the patient. I’m Dr. Puri, from palliative care.” I am so fixated on the blinking red numbers that I almost forgot to introduce myself to Blue Eyes.

  “Nice to meet you. I’m Justin, one of the physician’s assistants from the surgery team. Why don’t you talk with the family. I’ll be over at the nurses’ station.” He gives me a look I’d seen many times—raised eyebrows and pursed lips that suggest he would rather not put a central line in Maddy.

  I turn to introduce myself to Maddy’s two daughters, Molly and Beatrice, both with tear-streaked faces and red eyes, huddled near the door. I have just a few moments to explain my role in their mother’s delicate situation. I guide them just outside their mother’s increasingly chaotic room into the hallway. I position myself so that I can glance over Molly’s shoulder to watch Maddy’s vital signs on the monitor.

  Fluorescent light floods the hallway. The floor, recently mopped, glistens. “I am so sorry that your mother has taken a turn for the worse,” I say, “and my role is to help you make some decisions about her care since she’s quite sick.”

  “Okay,” Molly says. “Her doctor called me and said she needs to go to the ICU but she didn’t say what was going on. I drove right over. Why can’t my mom talk to me?”

  “She has a blood infection,” I begin, keeping an eye on the personnel going in and out of her room, “and her blood pressure is very low because of that, which is why she’s having a tough time communicating with you.”

  “Can they fix her in the ICU?” Beatrice asks.

  “We are trying to treat the infection with antibiotics, but it’s already caused such damage to her body that she may need a breathing tube and medicines to maintain her blood pressure. Sometimes, people can get better with these therapies. But since your mother has a very advanced cancer, it may be harder for her body to fight the infection, even with all of the help we can give her in the ICU.”

  “No,” Molly says, shaking her head and tearing up as she cuts me off. “No, she said she would never want that again.”

  “What are you talking about, Molly? We’re talking about her dying here! We are not giving up on her!” Beatrice argues.

  “Do you remember what happened the last time she was in ICU? Don’t you remember she said she’d kill us if she woke up with a tube in her throat? She said she would never want that again,” Molly pleads.

  83/47. Red numbers blink. 86 percent. The monitor beeps. A respiratory therapist places an oxygen mask over Maddy’s face.

  Molly turns to me. “What will happen if we don’t do the tube?”

  “If we don’t use the tube, we can give her oxygen through a mask and medications to prevent her from feeling breathless. But going that route and focusing just on her comfort would mean that she might die within hours based on how sick she is right now.” I speak slowly, enunciating each word carefully, as though the spaces between them would soften their blow. I wonder if Maddy had written down her wish not to be reintubated so that the decision wouldn’t fall to her daughters. Though I’d wanted to be helpful, I wonder if I should have told Dr. Lee that it may be too late to attempt this discussion when Maddy’s condition is so tenuous.

  “That’s what she wanted, sister,” Molly says, crying as I speak. “I know you don’t want to hear it but you don’t live with us, you don’t see her suffering like I do.” I ask if Maddy had ever written down her wishes not to have a tube. She hadn’t.

  “Yeah, but she’s got nine lives! She’s been this sick before and she got better. She didn’t know what she was talking about when she said that thing about the tube. That was the pain meds talking, that stuff they give her here!” Beatrice insists.

  “Let’s ask the doctor,” Molly says, wiping her eyes. “What would happen if she goes to the ICU?”

  “Well, we would put her on a breathing machine and keep treating her infection and blood pressure. We’d watch for signs of recovery, which would include her coming off the ventilator and not needing medications to support her blood pressure. But patients with an advanced cancer and a serious infection have a very high chance of dying because their bodies are overwhelmed and weak,” I say. I wish that someone could have had this discussion before this point of crisis.

  “So then, what? You let her die here instead of going to the ICU and trying to save her?” Beatrice asks.

  Before I have a chance to answer, I see the respiratory therapist and two nurses wheeling Maddy out of her room. A third nurse pushes along the IV pole and watches the portable gray monitor that was on Maddy’s hospital bed, the green tracing of her racing heart peering at us as she left. His central line kit under his arm, Justin trails after the group, pausing to tell me that Dr. Lee has decided to send Maddy to the ICU, where perhaps she can stabilize.

  Beatrice follows her mother while Molly turns to me. “I couldn’t even keep my promise to her,” she said as she cries in the hallway.

  10:20 A.M.

  Marco has end-stage pulmonary fibrosis, Dr. Fong, the ICU attending, starts to tell me. This ICU is identical to all the others I’ve visited throughout my training: the same large rooms, the same sliding doors, the same monitors, the same beeps of the same machines in the same cadence and sequence.

  Beep-beep-beep-beep-beep! the ventilator screeches.

  Ding—ding—ding—ding! the blood pressure monitor sings.

  “I can tell you his story,” Dr. Fong says, adding, “but you can see him tomorrow since his family isn’t here today.”

  I write down Marco’s name and medical record number and begin to take notes as Dr. Fong tells me the history.

  End-stage pulmonary fibrosis, on ventilator for fourteen days, not getting better, wasn’t really waking up off sedation, CT scan of head found large stroke, unlikely that he will ever wake up again, but family demanding tracheostomy and feeding tube.

  “One question—what has it been like talking with the family?” I ask.

  He squints at me, as though my question takes him aback. “Well, I basically told them what I told you. He won’t recover from this large stroke on top of this terrible lung disease and I didn’t think it would make sense to do a tracheostomy or a feeding tube, but they kept insisting that we do both.”

  “Did they explain why they felt that way?” I ask as I continue to take notes.

  He lets out an exasperated sigh. “Isn’t that your job?” he says. “Most of the time, you guys handle those types of conversations.”

  I was clearly annoying him, and I wasn’t about to anger a new colleague. “Sure, happy to help. I’ll give them a call to set up a meeting for tomorrow,” I say, forcing myself to smile.

  “Thanks,” he says distractedly, looking back at his computer. The ICU was full, every bed occupied by a patient with an uncertain future. As I leave, I notice Maddy in one of the beds, her eyes closed, her chest rising and falling to the rhythm of a ventilator.

  11:00 A.M.

  From the entrance to her room, I can tell that the lady in the hospit
al bed is all bony edges and sharp angles, from her cheekbones to her elbows to her knees. Tiny white curls cover her head except in a few patches where, I would learn, she has apparently pulled them out. Her caregiver, a plump Asian woman wearing pink scrubs, is reading a magazine and waiting for me to stop by.

  I walk into the room, which she shares with another patient, someone on the other side of the curtain who is playing Bob Marley. “Hello,” I say softly to the caregiver, who is startled and drops the magazine. “Oh, I am sorry, Doctor!” she says, retrieving the magazine and shaking my hand. “I am Anna, Miss Jones’s caregiver. Are you from the hospice group?”

  “I’m Dr. Puri, from the palliative care team. It’s very nice to meet you, Anna,” I say, shaking her hand and looking at Miss Jones. She has the faraway gaze that so many patients with dementia have. Her eyes, faintly brown, now appear ringed with blue. I wonder what she sees when she looks around. She makes a soft sound that reminds me of an infant. Bababababababa, almost a whisper. Babababababababa.

  “I think she’s trying to say hello to you!” Anna says cheerfully. “Aren’t you, Miss Jones?”

  I sit at the edge of her bed and hold her hand, easily able to feel its delicate architecture of bones and ligaments as it rests in mine. “I understand Miss Jones came in because she continues to aspirate when she’s eating, and that you were thinking maybe about putting a feeding tube in her?” I ask.

  “Yes,” Anna says, “and she isn’t eating much anymore. When I feed her, she swallows one or two bites but then she just keeps the food in her cheeks. Then yesterday she swallowed and started coughing, having a tough time breathing, so I brought her here.”

  I listen to Miss Jones’s lungs and hear the crackles that signify either a brewing pneumonia or irritation of the lung tissue from food that had made its way into her windpipe and then her lungs. She breathes comfortably, and doesn’t sweat or grimace as I examine her.

  “She’s lost fifteen pounds over the past two months,” I say, referencing what I’d seen in her chart.

  “Yes,” Anna says. “One of the doctors mentioned that maybe it is time for a feeding tube, but . . . I don’t know if that is good for her.”

  This was the reason I had been asked to see Miss Jones. Even though feeding tubes sounded like a good idea for patients with dementia who weren’t eating or cancer patients who had no appetite, they can actually cause significant harm.

  “When a patient like Miss Jones has advanced dementia, I think of losing appetite as the body demonstrating that it cannot use food as it once could,” I say, adding that feeding tubes in patients with advanced dementia won’t necessarily guard them against aspiration and could cause infections. Elders with dementia can also tug at a feeding tube, dislodging it and causing bleeding and pain.

  “But would that mean she would starve?” Anna asks, her voice shaking. I reach again for my tissues. “I cannot starve her, Doctor. I could not live with myself.”

  I motion to Anna to sit down. “You are saying exactly what most people say when I talk with them about feeding tubes,” I reassure her. “It means that you love and care so much for Miss Jones, and you really want to do the right thing for her.”

  Anna nods, her features scrunched together by a spasm of sadness. “But when patients stop eating on their own or start pocketing food, it is actually a sign that their bodies are getting sicker from the dementia. Just like we have heart failure or kidney failure, dementia is a sort of mind failure. And we know from studies that putting feeding tubes in patients with very advanced mind failure may not help them to feel better or get stronger.”

  Anna’s sadness reminds me of the many caregivers I meet who consider their patients to be family. Sometimes, caregivers were the only companions that patients had, and their attachments to patients ran deep. Clearly the attachment was mutual: in her advanced directive, which she completed five years ago, Miss Jones had listed Anna as her medical decision maker, the person she felt knew her well enough to be her voice when she could no longer speak.

  “Let me ask you a question, Anna,” I say. “What do you think Miss Jones would say about this decision if she could speak to us? You know her better than anyone in the world.”

  Anna fingers the tissue in her hands. “I know she would not want it,” she says quietly. “She has a directive saying that she doesn’t want any tubes. But I can’t . . . I can’t be the one to say okay, no tube.” She begins again to cry. “I know I am her caretaker but she feels like a mother to me.”

  She needs space, I think to myself. Space for her tears and grief. I sit with her, allowing her to cry, imagining how painful it must have been for her to watch Miss Jones deteriorate, how much strength she must have needed to continue to care for her as she grew bony and mute.

  Her tears slow to sniffles, and I ask her if she wants to stop for now or keep talking. Either was fine with me. This wasn’t a decision we had to make right this second. We can keep talking, she tells me.

  “What strikes me as such a gift, and so powerful, is that Miss Jones has really made her own decision about this,” I remind her. “She wrote it out for you in the directive. I’m not saying that the directive makes this situation better or easier, but you wouldn’t be starving her, Anna. You would only be honoring her wishes.”

  I have learned that, for family members or caregivers, following a directive could provoke just as much guilt and sadness as making a decision without the guidance of a directive. Anna looked at Miss Jones and massaged her tiny arm. A piece of paper doesn’t soften the blunt force trauma of loss.

  “It’s so hard for me, but I cannot be selfish,” she says. “I know what she would say.”

  Not all conversations about feeding tubes went this smoothly. Many, like my conversation with Masaki’s family on the first day of fellowship, provoked emotions on the continuum between surprise and anger. A devoted son wondered, as Anna did, whether his father would starve without nutrition. A loving wife wondered if forgoing a feeding tube would expedite her husband’s death. Almost everyone wondered how food could cause harm.

  Anna has questions about how to recognize when Miss Jones is hungry or thirsty. She wonders how long Miss Jones would live at this point. She herself asks about hospice. She asks all the right questions despite her emotions.

  “I have to be her voice.”

  11:45 A.M.

  I step into the elevator, trying to find my way back to my office in the basement, and a young woman smiles at me. She is tall with shiny dark hair that reaches past her shoulders, and wears a stylish blue top with knit brown pants and small heels. One pocket of her white coat is stuffed with what appear to be printouts of notes from patient charts and a prescription pad. She has curled up her stethoscope and placed it in her other pocket. I notice her glancing at my name tag, something I’d often done when standing next to colleagues in elevators, trying to guess their specialty. “Oh, you’re our new palliative doc! I’m Daria Lee! We spoke on the phone about the lady who went to the unit!”

  “It’s so nice to meet you, Daria! I’m sorry I couldn’t help more with that patient. It was . . . a tough situation.”

  “Don’t worry about it, I’m just glad you’re on board. We’ll keep talking to the daughters,” she says. The elevator dings. We are at the first floor. “Are you here full time?” she asks as she starts to step out.

  “No, just in the mornings. In the afternoons I do home visits.”

  “I actually have another consult for you,” she says, “and I feel bad because I know you have to run. It’s for pain control. Guy with metastatic renal cell cancer. Can I give you his name and medical record number, and maybe you can see him before you go?”

  The elevator dings again, forcing me to either step out and take the consult or say I have to leave and head back to my office. In the beginning, you want to try to work really hard to get to know your colleagues. I remember Dr. Nguyen�
��s advice to me about starting my first job.

  “Sure, happy to,” I say, stepping out of the elevator and holding it open for a nurse and a woman using a walker who fill the space we’ve left vacant.

  1:30 P.M.

  I don’t have time to write my notes. I’ll have to come back later this evening after home visits, I think to myself after calling Daria and leaving her a lengthy message with my recommendations for her patient.

  As I gather my bag and notebook for home visits, I quickly look up the phone number for Ms. Carson, my first home palliative patient. I call her daughter and tell her I’m running late. “No problem,” she says. “She’s not going anywhere!”

  Car, 1:45 P.M.

  I have never done a home visit alone. At Stanford, I visited the homes of patients on hospice or home-based palliative care, but always with another doctor or a nurse. I always loved the concept—home visits were easier for patients and provided me with endlessly helpful information about how their health might be affected by their lives and families: Were medications stored safely? Were unruly power cords and rug edges responsible for the fall that a frail elderly patient suffered? Did the family or caregiver turn the patient gently, tend to her wounds the correct way?

  These visits force me not only to observe a patient’s environment closely but to also examine the patient very carefully. I can’t just send them to radiology for a quick X-ray to check for fluid in the lung, or call a colleague to come by and help me determine whether red skin around a bedsore is a simple cellulitis or a more aggressive infection. Instead, I have to ask if I can turn off the television or radio to listen in silence to a heartbeat or air moving in and out of the lungs. I open a clinical examination textbook for the first time since medical school to review whether I was doing all the maneuvers I can to check for fluid in the belly; I can’t just walk over to the ICU and borrow an ultrasound probe to know for sure. It is refreshing to take a patient’s blood pressure as she relaxes in her living room, my eyes wandering from the cuff to the graduation photos on the wall, the copies of People or Ebony or Men’s Health strewn about a coffee table.