A Long Night's Journey Into Day

Rose, a mother in her forties with young kids, had gotten an allogeneic stem cell transplant—an allo—with the hope it would cure her cancer.

In and out of the hospital for several months afterward, she dealt with a lot of bad side effects; unremitting bloody and black diarrhea was the reason for her most recent admission, and the docs now wanted to try a last-ditch drug that might help her. It could also make her so sick that she’d need intensive care to save her life.

And she was refusing to go to the ICU.

Her nurse that day, Anne, was a young woman with a strikingly beautiful face and the courage to speak her mind. The wisdom and bravery she displayed in this situation were impressive, considering her age.

“She doesn’t want it,” she insisted to anyone who would listen. “She doesn’t want to go to the ICU.”

The medical staff felt differently. To give such a potentially toxic drug to a patient, they argued, imposed the ethical obligation to save her from the drug’s possibly lethal effects. Rose, however, did not want to be saved.

 

I first met Rose during one of the many admissions that followed her allo. Or maybe that was when she first really caught my attention. She’d developed a rash that turned her face purple. This can happen as a result of graft-versus-host disease, a side effect of allogeneic transplants, but it’s nonetheless surreal to see a human patient so resemble a blueberry. I was taking over her care from the dayshift nurse during the midday shift change.

She had horrible diarrhea that time, too, and was using the portable commode we’d set up in her room when I heard her moan and saw her collapse in on herself. The dayshift nurse and I couldn’t rouse her. Worried she’d had a seizure, or that something equally bad had happened, we called in a rapid response team, and the room quickly filled with people. Other nurses from the oncology floor, ICU nurses, a physician who specialized in intensive care patients (called an intensivist), and a respiratory therapist all came in while the poor woman sat on the toilet. Her husband, Toby, tried to use his body to shield her, protecting her dignity while inadvertently obstructing the medical care she needed.

The intensivist let out a small sigh and asked if we could move Rose onto the bed. She weighed very little. But then she was once again alert. I helped her to stand and shuffle back to her bed to lie down. I looked down at the bucket in the bedside commode, full of black liquid that looked like nothing that should, or even could, come from a human gastrointestinal tract.

If I’d been in her position, I would have worried that one could actually die of embarrassment. Once Rose returned from wherever she briefly went while we couldn’t revive her, she was nonetheless calm and helpful, answering questions clearly, neither minimizing nor overdramatizing what had happened. She hadn’t seized. Her blood pressure was through the roof, but that wasn’t surprising, considering the stress she probably felt at that moment. Her skin was purple, and something was very obviously wrong with her gut, but nothing was so acutely wrong that it required a code team to pile into her room as she went to the bathroom. And she certainly did not need to be cared for in the ICU.

Everyone else left, and the dayshift nurse and I explained why we’d called in the code team. “There are times when we need more help,” we said. “Now you know that if there’s a real crisis, we have all these people ready to step in.”

• • •

In time, Rose’s skin cleared, her GI system returned to normal, more or less, and she went home. Anytime a long-term patient leaves the hospital, it’s a happy day for her and the staff; for me, Rose’s returning home felt especially significant. She and I were roughly the same age, our children were the same ages, and we both had PhDs that we weren’t using in our present lives: I had gone into nursing; she was home with her children. She’d had such a rough ride posttransplant, and her young kids, her devoted husband, and her own graciousness and focus all made Rose a patient whose well-being I became personally invested in.

In an allogeneic transplant, cancer patients receive intravenous infusions of someone else’s hematopoietic (blood-making) stem cells, which include the cells that had contributed to the donor’s immune system. The donated cells are the graft, the patient, the host. Unfortunately, the graft cells can attack the patient. This is graft-versus-host disease, or GVHD, and it’s what happened when Rose’s skin turned blue. The skin and digestive system problems that Rose developed after her transplant had been symptoms of acute disease. Her many subsequent readmissions to the hospital, also due to skin and gut problems, suggested the more chronic form of GVHD. The severity of the disease varies, but at its most aggressive, it can kill as surely as cancer.

In the first few months after her transplant, Rose developed a rash unlike the one that had turned her face purple, a red rash that spread all over her body. Her skin began to slough off, giving her the appearance of a burn victim. Our doctors thought a complicated procedure called photopheresis might help, so Rose started going by ambulance to a different hospital with a photopheresis machine. The process took four hours, and when she returned to the hospital, her bedside nurse would apply medicated lotion to her skin and wrap it in Saran Wrap, trying to keep inside whatever moisture remained. I was never her nurse during this time, but I saw what she went through— the uncomfortable ambulance rides, the slow and painful wrapping of her skin. She displayed incredible fortitude, commenting gently when something hurt, putting up with the annoying trips to the other hospital. On the floor, she walked in the hall as often as she could, dutifully performing the strengthening exercises detailed by signs posted at intervals along the walls: Stand on one leg, then the other. Do push-ups off the wall.

“What choice do I have?” she would say when I noted how hard she was working to stay strong.

She would get better, go home, and invariably return to the hospital. Every time she left, we sighed with relief, crossed our fingers, wished her never back. Whenever she returned, I got a hollow feeling in my stomach. She was such a wonderful person, and her illness trajectory seemed so unfair. The resemblances between her life and mine left me constantly fearful for her husband and children, and for my own.

 

Things never went well for Rose for long. Too soon, she came back to the hospital with terrible diarrhea, agreeing to treatment with another powerful drug but refusing a transfer to the ICU.

She wasn’t my patient, but Anne wanted some help speaking for Rose, and I butted in. I was at the nurse’s station when the situation unfolded. It was the middle of the afternoon, and I’d just come in for evening shift, from three in the afternoon to eleven at night. Both Rose’s doctor and her husband wanted her to take the drug. And she was willing. But she didn’t want to go to intensive care, be put on a ventilator, and be loaded up with lines and tubes. She had physically suffered so much already; ICU was a line she refused to cross.

The clinical pharmacist on her case, David, had a surprising and wry sense of humor. On that day, though, he was thoroughly serious, arguing that it was unethical to give Rose a potentially toxic drug and then stand by to watch as it killed her. If, through our care, we created a life-threatening situation for Rose, he maintained, then we needed to do everything we could to reverse the dangerous effects of our treatment.

His reasoning was sound, his logic flawless—the patient simply disagreed. She would take the drug but would go no further to save her own life.

“People are complicated,” I told him when he said that Rose’s decision made no sense. It made sense to Anne and me. Perhaps, being women, we more instinctively understood the necessity of compromise in such a situation. She would take the drug for the men in her life—and, by extension, for her children—but she refused to abandon her autonomy over her own body. Anne and I had also seen the physical toll of her treatments, with not much good health to show for it.

We convinced the medical team that we would administer the drug but would refrain from calling a code or initiating Rose’s transfer to the ICU in the event of a bad reaction. To cover ourselves legally, we clearly indicated these choices on the required Code Status form and carefully documented Rose’s decision. The treatment would start that evening, after Anne finished her shift. The nurse in charge had just asked me to work for sixteen hours, which meant I would stay overnight until seven thirty the next morning. I agreed, and she then told me I would be Rose’s nurse for the rest of the shift.

So began the longest night of my life. The drug would drip in over the course of several hours, and I would be taking vital signs often. Toby planned to stay the night. I doubted he would sleep at all.

If Rose crashed and we couldn’t save her on the floor, she would die. Toby had agreed to this plan, her wish. It had all made sense when Anne and I argued on her behalf; but now that I was charged with carrying out Rose’s wishes, I wasn’t sure how I would manage.

Fortunately, one can always fall back on routine. I gave Rose the premedications she needed before the IV infusion started. I then waited for pharmacy to deliver the drug, double-checked the dose in the IV bag against the written order, and started the infusion. There was no drama in any of these tasks. I was giving meds and hooking up an IV, both of which I’d done hundreds of times.

The drug dripped in—nothing happened. Because the situation with Rose could turn critical at any moment, the charge nurse had assigned me only three patients. My other two were cakewalks, thank goodness, who needed little from me.

Rose’s blood pressure was a little off during the first few hours as the drug infused. Every time I took her vital signs, Toby insisted on hearing the numbers himself, and I would read off her heart rate, oxygen level, blood pressure, respiratory rate, and temperature. He would then look at me, trying to read my reaction. I strove to project a calm watchfulness; I’m not sure I succeeded. I could honestly reassure him, though, that she was stable. Her oxygen needs weren’t increasing, and her heart rate wasn’t going crazy. Her blood pressure was a little funky but nowhere near dangerous.

Rose mostly slept, and when she woke up, it was because I was clumsy taking her vitals or because she had more diarrhea, but not because she was worried or suffering.

Regardless of her calm, every set of vitals felt like an ordeal. The blood pressure cuff was attached to a dial on the wall by a long, curled cord that twisted and pulled awkwardly whenever I used it. Pulling the cuff toward Rose, I would invariably slide the cord across her face or drag it along the top of her head. Then I’d wrap the blood pressure cuff around her wasted upper arm, gently put the bell of the stethoscope under the edge of the cuff, and pump up the bulb that registered her pressure. The pulse oximeter— which I’d attached to a finger on her opposite hand—registered her oxygen saturation and heart rate while I released the air in the bulb and listened for her pressure. I’d then take the cuff off her arm, unclip the pulse ox from her finger, and stick an aural thermometer in her ear.

It felt like a dumb show. It was dark outside, and the dim light over Rose’s sink was the only light in the room. I did my work with the cuff and the pulse ox monitor, trying to appear impassive while Toby watched me, apprehensive. I whispered the numbers to him. Rose did her best to sleep. It took about five minutes to take her vitals, and we did the whole thing all over again every thirty minutes.

At around two in the morning, I realized that Rose was going to be OK. If someone’s body will react to the drug, it usually happens at the beginning of the infusion. She’d been mostly stable, even at the start. The change I’d noticed in her blood pressure, earlier, had resolved itself over the past few hours.

I told Toby that she would be all right and suggested he try to sleep. He couldn’t. I’m sure he was tired, but how could any man sleep through the night when his wife, partly as a result of her own choices, might have died? If we had gotten to that point, he would have surely wanted a chance to say good-bye. He was a kind man, friendly, generous. But that night—all night—he projected a tense wariness that wore on me. He had been ready for his wife to die, and now she would live. I don’t know anyone who could adjust easily to such a change, and he seemed stuck. He’d been prepared for the worst, but now a small bit of hope quietly entered the room. Could he believe in it?

I confess that I was not so diligent with my vital signs over the next three hours. I went in only every hour and disconnected the empty drug bag at around five in the morning. Rose slept, Toby also. His vigil was over.

In Eugene O’Neill’s play A Long Day’s Journey into Night, the members of an emotionally mistrustful family try, and fail, to find a way to care for each other. The father, formerly a famous actor, is a self-absorbed skinflint, and the mother is a morphine addict. The younger son has tuberculosis, the older a lifetime of resentment. They feel attached to one another, but caught up as they are in their own preoccupations and needs, their attachments are ambivalent, hurtful. By the end of the play, night has fallen, the male characters are alienated from each other, and the mother is so doped up that she’s lost touch with reality.

My night with Rose and Toby was a reversal of that narrative trajectory. We had feared that the night would bring about the ultimate fracturing of their family—the death of a much-loved wife and mother—but she survived, and her husband stayed with her to loyally offer his support throughout the night. Day and light would come for them both.

Before I left for home that morning, I went to see Rose one last time. She woke when I came into the room, and the look on her face was devastating. She was—disappointed. I saw it: the tightening around her eyes, the quick and sad downturn at the corners of her mouth. It was a brief, unguarded moment before she recovered her usual equanimity, but it was enough for me to learn something unexpected: she was sorry she hadn’t died. The look on her face suggested—to me, at least—that she wanted the drug to have killed her.

Toby woke up at that moment, so I couldn’t ask Rose how she felt about having made it through the night. Besides, a new day was starting: the first flickers of dawn would soon light up the world outside the windows; a new nurse would come in to take over for me; the doctors would begin to assess whether the drug had done any good.

In the end, it didn’t. Rose got the drug a few more times, during daylight and with much less drama, and although it didn’t kill her, neither did it save her. A few weeks after that long night—after more drugs, more days of horrible diarrhea, and at the end, more pain—she died.

The morning after that first dose, dazed with exhaustion and the emotional strain of my shift, I left work wondering how I would ever recover professionally from such an ordeal. I’d given a patient a drug that could have killed her, and I would have watched her die without sounding an alarm or calling in more help, knowing that I was doing my job well. Before that night with Rose, I hadn’t understood that being a good nurse might entail such a friendly intimacy with death.

Feeling more tired than I’d ever felt after work, I walked outside through the sliding glass doors leading to the small alley that separated the parking garage from the hospital. I usually experienced this passage as a sort of limbo: a seven-foot-long stretch of asphalt that got me to where I parked, a portal where tired nurses left as fresh ones entered. On that morning, though, I felt a breeze on my face as I stepped through the double doors and saw the day’s first light, and it hit me: I’m alive.

* Illustration by Anna Hall


This essay was originally published in I Wasn't Strong Like This When I Started Out: True Stories of Becoming a Nurse.
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Author Bio

Theresa Brown

Theresa Brown, BSN, RN, OCN, is a clinical nurse and sole contributor to the New York Times opinion column "Bedside." She is the... read more

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