Duke University, Durham, North Carolina, United States
“Refused?” I asked incredulously. She’s in pain on her deathbed. Why would she refuse? Sarah, the night nurse, sleepily rejoined, “I told Miriam to take it, but she won’t. I don’t get it either.” It was 7 am. Sarah was eager to go home, and I needed to start making morning rounds on my patients. Sarah offered no further explanation, so I walked to the nurse’s station, logged on to a computer terminal, and looked up Miriam’s labs and complete history. Sarah was behind me gathering her belongings to go home. “No DNR order?” I disbelievingly asked. “No,” she replied uninterestedly. “Just so you know,” she casually added, “the husband is always at the bedside. He gets mad when you touch her, so good luck with giving any nursing care.” I turned and stood confounded as Sarah walked down the hall onto the elevator and waved goodbye.
I went to Miriam’s room to do an assessment and try to uncover answers to Sarah’s perplexing nightshift report. Upon entering the room, I was disheartened to see the sullen eyes of a disturbingly marred body staring at me. Miriam’s face was grotesquely mottled, and her expression revealed someone drowning in pain. She was 72, had multiple organ failure, low blood counts, and frequent infections. Her entire body was swollen like a balloon, and large deep ulcers peppered her skin. Her wounds oozed colors I did not know a human body could produce. Even with frequent blood transfusions and heavy doses of antibiotics, her laboratory results were waning. The aggressive treatments were burdensome and only prolonged what appeared to be unbearable suffering. I could not understand why anyone would want to spend the end of her life at a hospital in intractable pain. The thought of doing chest compressions on her brittle body made me shiver; if she coded and was brought back to life, her status would be worse than it was now.
I introduced myself. Miriam offered a weak smile as her husband Ralf stood vigilantly at the bedside. For an old man he was a surprisingly imposing figure. He had a thick head of grey hair, piercing blue eyes, and a severe unwelcoming mien. As I listened to Miriam’s heart with my stethoscope, I could feel Ralf’s eyes watching me. I looked at him and smiled. He stood silently and did not return my smile. I asked how he was doing and how the night went. Without hesitancy, he loudly replied with remonstrations of poor nursing care and insensitive physicians.
After asking another nurse to keep an eye on my other patients, I took a seat on the chair adjacent to Ralf and in front of Miriam’s bed. For the next hour we discussed the nature of injustices Ralf brought against the staff. Occasionally Miriam would interject to soothe his frustration. The moment she uttered a word he was quieted, giving her full attention. I tried to ease his hostility, but I was more concerned with Miriam. I never encountered a patient that looked so beaten and overwhelmed with pain. Yet despite the burdensome treatments that she was receiving, she exhibited extraordinary stoicism. I asked Miriam about her refusal of pain medication. She said it prevented her from thinking clearly. I could not reconcile her explanation with the pain she was experiencing. “What do you mean? Do you hallucinate?” She became aggravated with my inquiries. “No, that’s not it. I get groggy, and it’s hard to be awake. Ralf and I cannot talk when I’m sleeping.”
I reassured her it was okay to sleep because her body needed rest. She did not reply and looked toward the window. Ralf took a seat on her bed and stroked her hand. She smiled and whispered to him. Ralf nuzzled his nose on her cheek, and she returned his affection. Their conversation was inaudible to me, but watching them I began to understand her impetus for declining palliative care. She was sacrificing pain medication to be with him.
The two had been married almost 50 years. Ralf loved her like few men I have ever seen love a woman. He rarely left her side. At night he slept in her room on the hospital’s plastic green pullout chair. Occasionally he would go home to sleep, returning before I arrived in the morning. He assured me his wife was a fighter and the toughest of women. He was convinced with a lover’s heartfelt intuition that his wife would overcome this disease and be cured of her ailments. The care providers, Ralf and Miriam had tacitly avoided the stark reality of Miriam’s ominous fate.
I caught Miriam’s physician in the hallway. Even though she had the appearance of a delicate china doll, Kate was tough as nails; she was smart, strong, and did not afford false pretenses. I knew we could start fresh with Miriam and Ralf because this was our first day with them. I summarized my discussion with the couple to Kate. She listened attentively and nodded. “Okay. Thanks for letting me know. We’re going to have to do something about this,” she said matter-of-factly. Entering into the room with me, Kate introduced herself to the couple and asked how Miriam was feeling.
Ralf quickly began to list his complaints about his wife’s care. Kate acknowledged his concerns and discussed what would change, then focused on Miriam. Kate’s countenance began to alter as she finished reviewing Miriam’s clinical results and the plan for the day. She imparted a compassionate but searching expression, “Miriam, the nurse tells me you are refusing pain medication.” Ralf began to furrow his brow with concern. Miriam seemed receptive to the discussion, and Kate’s genuine attentiveness toward her softened Ralf’s demeanor. After Miriam agreed to receive scheduled pain medication, Kate asked about other treatments that Miriam may or may not want.
At the mention of a DNR order, the husband quickly grew irate. “No! No!” he exclaimed resolutely. “That is not what we want!” He pounded a clenched fist on the table. “Sir, that is not what you want, but I would like to hear what your wife wants.” Kate’s reply only escalated his anger. “I do not want to hear it! No! You see her as just another patient. She means nothing to you, but for me she is my life.” His outraged tone was threatening, but his words were passionately sincere. Kate calmly maintained her composure, “Sir, I am going to have to ask you to leave the room while I discuss this with your wife. I will call security if necessary.” Ralf’s anger slowly began to ebb and was replaced by helpless exasperation. The severity of his wife’s condition was becoming a dismal reality. He knew Miriam wanted the suffering to end, and she only persevered for him.
Ralf looked at his wife, searching for her response to the doctor’s request. Miriam closed her eyes and nodded. Tears filled Ralf’s eyes as he slowly walked out of the room. Kate closed the door and sat on Miriam’s bed. I sat on the other side and held Miriam’s hand. Kate explained Miriam’s prognosis and her option to receive palliative care. I was surprised at Miriam’s willingness to end the treatments that were keeping her alive. She was suffering greatly and confided that she just wanted to die peacefully, but she could not say this in front of Ralf.
After our discussion Ralf returned to the room. At Miriam’s request, Kate explained to Ralf what was about to happen. Without argument he gazed at his wife in agonizing sorrow. Ralf sat on Miriam’s bed and gently wrapped his arms around her as she cried. He placed kisses on each tear, and with every kiss he told her he loved her.
At the end of my shift, I went to see Miriam and her husband. While I dreaded the thought of her death, it comforted me to know Miriam’s suffering would soon end. Ralf was sitting on Miriam’s bed watching her sleep while he tenderly stroked her arm. He looked tired, forlorn, and in need of a good night’s sleep. I searched his crestfallen face for a sign of hope that he would somehow endure this. He stood up, looked at his wife, and shrugged his shoulders as if to say there’s nothing I can do. I wanted to make his pain vanish. I hugged him in naïve hope it would give him strength. He bitterly wept, and I hugged him tighter. I had nothing else for him except that I was sorry. I was so sorry.
ELIZABETH NEGLIA, RN graduated from Christendom College with a BA of Philosophy. She returned to school and received a bachelor of science in nursing from Drexel University. She is currently a student at Duke University School of Nursing pursuing a PhD. As a nurse she encountered various ethical issues that incited her to obtain a masters in bioethics at the University of Pennsylvania. She was also a member of the Hospital of the University of Pennsylvania's Ethics Committee. Her research interests include improving communication between healthcare providers and patients at the end of life.
About the photographer
Todd Hochberg is a documentary photographer who works in conjunction with hospital bereavement programs, palliative care programs, hospices, and directly with individuals. He makes documentary photographs and legacy video for individuals and families who are struggling with end-of-life transitions. His work resides in the permanent collection of the George Eastman House International Museum of Photography. He was a finalist in the W. Eugene Smith Grant Competition in Humanistic Photography in 2003. He also had a solo exhibition at Northwestern University Feinberg School of Medicine in 2009. Visit his website at www.momentsheld.org.