I have a confession: I love working with “difficult” families. As a resident physician, this isn’t something that I often admit to my co-residents or big-boss attending for fear that there would be a line outside my door longer than the cafeteria Starbucks at 6:50 AM. “Difficult” families — emphasis on the scare quotes — difficult families are difficult for residents because they demand Time. As a resident, my day is stuffed to the brim with writing notes, entering orders into the computer, getting records, calling specialists, and of course helping with emergencies, noticed by our stellar nurses, who actually spend time with our patients — patients in need of urgent oxygen, antibiotics, surgery, or transfer to the ICU. Nowhere in my day has there been reserved time for sitting down in the quiet of a family room, curtains drawn, my cell phone silent, speaking with the people who matter the most to my patient— her family.
Difficult families are difficult because they ask the questions that we don’t have the answers to. Difficult families are difficult because they do not trust us. And we do not always know why. Difficult families are difficult because they love loudly, boisterously, in waves of fear and hope. Difficult families are difficult because they remind us, or at least me, of my own family.
The Joneses were a difficult family. I’ll pause here to say, I hope intuitively, that wasn’t their real name. Ms. Nancy Jones was stately woman in her youth, well-dressed in a bright suit, a business woman before her time. She never married so when she got older, her nieces and nephews from four different siblings bonded together to take turns taking care for her. She was the youngest of her generation so by the time her cancer had relapsed and her dementia had progressed until she only knew her name, only they were there to care for the woman who had protected them all their lives. Ms. Nancy’s youngest niece June brought her to the emergency department 1 week after her month with Ms. Nancy started because she wasn’t eating.
Doctor Sarah was the resident on her medical team. She got to know Ms. Nancy asking her the same questions each morning: “What is your name?”
“Nancy.”
“What year is it?”
“1985.”
“Where are you right now?”
“Library?,” Ms. Nancy’d say hopefully.
“No,” Doctor Sarah would answer, “But I brought you a magazine.” Ms. Nancy would flip through it without stopping to read the headlines, and doze back off to sleep almost immediately. We never knew if Ms. Nancy was hungry. Everyone asked, her nieces, nephews, doctors, nurses but she never told them. She aspirated one day, which is the medical way to say something went down the wrong pipe, instead of the esophagus into her lungs. The senior doctor saw her, the speech experts saw her, she underwent tests of her swallowing. The doctors determined it was not safe for her to eat, and would never be. Someone, it was never clear if it was doctor or nurse or nephew, first suggested a feeding tube.
June and her brother Tom worried: “Doctor, without food. My aunt will starve. Look at how little she is now, and how quiet. She was a loud, laughing woman; she always had dessert winking at me that she didn’t need to catch a man. She cooked me handmade pastas when I snuck over after being grounded. My aunt loves food. Food was love for my aunt. How can we let her starve? Please put the tube in. Just to let her get her strength back.”
Doctor Sarah said, “A feeding tube. It would be a bridge to nowhere.” This is a common phase used by doctors who know that with a feeding tube down her nose, Ms. Nancy would not be able to leave the hospital. No nursing homes would accept her with the yellow rubber tube and the soft white mittens she wore to keep her from pulling it out. But when Doctor Sarah said “A Bridge to Nowhere,” she imagined a beautiful princess, Ms. Nancy in a blue suit, trapped in the castle tower of her dementia. A cobble stone ridge arched from the window, looking more sturdy than it was, before dropping abruptly still 300 feet in the air into a moat of crocodiles.
When Doctor Sarah put the tube in, Ms. Nancy fought her, clawing at her at first. Then as Doctor Sarah took an Xray to make sure the tube was safely coiled along her stomach, Ms. Nancy stopped fighting, a few tears streamed down her cheeks in silent protest. She looked at Doctor Sarah, and Doctor Sarah looked away, ashamed.
Justin, the son of Ms. Nancy’s only brother, arrived with his wife to observe his withered aunt and declare: “She never wanted this— she didn’t want tubes and wires. Her primary doctor asked her last March at a visit, would you want CPR, would you want to be in an ICU. She said, ‘No!” It’s written down. That must count for something.”
“Unfortunately, no,” Doctor Sarah said. “Not if you or June, your aunt’s healthcare representative decides otherwise. You are aunt’s voice now.”
June protested her cousin, “Our aunt barely knew where she was then, how could she have known what she wanted? I didn’t like that primary doctor; he always seemed like he knew more than he was saying. She needs the tube in!”
“We can’t allow her to eat, “ June’s brother added. “We would be letting her die.” “If we don’t let her eat, we won’t allow her to live,” Justin replied.
Ms. Nancy never ate again. She barely spoke again. When Doctor Sarah asked her in the morning, where she was, she just rolled her eyes away. Two days later, she developed a pneumonia.
“From aspiration,” Doctor Sarah explained. “But how— how could this happen if she wasn’t eating? Did someone bring her food?” June cried. Justin looked guilty.
“This can happen,” Doctor Sarah said, “From even secretions in the mouth— I mean, drool— or from the food we pumped into her stomach can back-up; she can vomit it into her lungs. This probably happened. She needs another tubes, one to help her breathe. I don’t know when, or if, we will be able to take it out.”
“Please can you just make her better?” June asked.
“What does better mean to you?” said Doctor Sarah.
“I just want my aunt back.”
Doctor Sarah didn’t know how to tell this family that their colorful, bountiful aunt, quick to joy and anger, was gone already. We don’t know where the mind goes as dementia sneaks in. We don’t know how much of the woman before us is Ms. Nancy, the woman who put her niece through college, who sang alto in the church choir, who fed the neighborhood stray cat. It is hard for all of them to imagine that Ms. Nancy would want to see herself like this.
“I am afraid,” Doctor Sarah says, “I am afraid she is dying. I don’t want her to die with me and the beeping of our machines. I want her to die with you, her twelves nieces and nephews, and their children, little Nancy and Sue.”
“Well, we don’t don’t want her to die!” June replied.
“We can’t put a tube in her and leave her here like this,” her cousin Justin shouted back. “Just because we can’t imagine life without her.”
“Just because you don’t want to show up every day in this creepy beeping room,” June retorted. “Don’t forget how she—“
Ms. Nancy opened her eyes slowly to the voices of her niece and nephews shouting in a battle to save her as best they could. The room was silence, and every head turned — Doctor Sarah, June, Justin, and Ms. Nancy’s ten other nieces and nephews, cousin Tom clutching six-year-old Nancy’s sticky hand, her mouth agape. Even Baby Sue feeding at her mother’s breast seemed to pause, as they leaned in to listen. Ms. Nancy opened her mouth, once, twice. Then closed it again. Her eyes closed too.
“We are her voice now,” Justin said as he met June’s eyes. June nodded. They agreed on this. Now they they would decide what to do.
Author’s Note: this story is true, in that is based on my true experiences with families. This story is fiction in that all names, characters, and incidents portrayed have been made-up. No identification with actual persons (living or deceased) or places is intended or should be inferred.