DYING TO KNOW | Lindsey Ulin
“Has anyone told her husband she’s dying?”
There is a scene in the Barbie movie where Margot Robbie’s character is at a dance party and asks, “Do you ever think about dying?” She’s met with horrified looks accompanied by an abrupt record scratch before silence. My question provoked the same reaction, except this was no disco. The rhythmic beeping of life support alarms marched on in the ICU.
“Well…. I don’t know if I’d throw in the towel yet. I don’t want her husband to lose hope. But you can call him after rounds and say we’re worried,” my resident replied.
Keeping this woman’s heart pumping and blood flowing to her brain was only becoming harder. Our ICU team worked tirelessly to bring her back to her three kids, her husband and church. But her labs kept worsening. A ventilator, four intravenous medications and endless monitoring were not enough to overcome a worsening infection. Her kidneys, liver and heart were failing her.
In the ICU, it is easy to get lost in the trees and miss the forest. Daily phone calls to families say their loved ones are “stable” but stable often masks a grim reality. I wondered if her husband, an accountant two hours away, had a sense of how bleak things were.
The herd of our team's computer stations on wheels (affectionately called COWs) pushed toward our next patient’s room, but something about her case kept bothering me. Everyone on our ten-person team saw that despite our best efforts, she was going to die in this hospital. Yet we tiptoed around the truth.
I’d love to tell you my moral distress here was a one-off situation, never encountered again. Over and over, I heard some variation of the same answer from my colleagues when I wanted to talk to families about their loved one’s poor prognosis. “We don’t want to destroy their hope,” plus or minus euphemisms of thrown towels, pulled plugs, etc. I held back my uneasiness most of my first year in residency, assuming the more experienced clinicians knew something I didn't.
“So, what should I tell her husband? I don’t feel like saying 'we’re worried,' does this situation justice...” I asked, trying to understand without letting the frustration and guilt swirling inside of me spill over onto the recently mopped linoleum floor. I thought about feedback from my last attending: “You’re too nice.” My resident at the time tried to stick up for me saying, “She’s from the South. That’s just how they talk down there.” She countered with, “Say things with confidence like a male doctor. Or no one will take you seriously.” What would be the confident way to ask my question without blowing up my career?
Why are we, a group of highly educated doctors, comfortable with poor communication, too afraid to say the words families need most: Your loved one is dying?
Is dying such a dirty word? Would she still want all of this intensive medical care if she knew she was dying? Her nurse is worried she’s uncomfortable. What final words would her husband say to her if he knew?
Before I could dwell on it, another patient tried to rip their breathing tube out. Instructions to order physical restraints were shouted in my direction. Two new critically ill patients rolled in. A few hours later, I finally had a moment to call her husband.
Three rings before the chaos and flurry of the ICU came to a halt with their voicemail. My palms suddenly glistened with sweat. It was her voice. Oh God, I wasn’t expecting that. I, I, I’ve never heard her speak; she’s been sedated and ventilated the entire time I have known her.
I panicked.
“Hi, it’s Dr. Ulin from the ICU team. Sorry to call at this hour, but your wife is doing worse and we’re pretty worried. We recommend trying to get here soon if you can. I’ll try the other number as well.”
She died an hour later. If I stared up at the fluorescent lights long enough, the angle stopped the tears from running down my face. The nursing note read: Code blue called at 2300, pulseless electrical activity (PEA arrest). Resuscitation efforts stopped at 0000. Husband notified. Arrived to collect belongings at 0215 and autopsy declined. This writer accompanied the patient to the morgue. Their funeral home was notified.
What isn’t documented is we knew she was too sick for CPR to bring her back. But that’s not frequently said to families. We mistake hope and honesty as being mutually exclusive.
It took four days for my nausea to subside while trying to make sense of my cognitive dissonance caring for her. When do we decide someone is dying? She’d been worsening for days. If we shared our worry that time was short, would her husband have been able to say goodbye? Her unfair death wasn't from a failure of our team’s efforts—a severe infection and its effect on her organs failed her. But our poor communication failed her family.
I’m sorry for your loss. A separation of suffering– distant, empty and as poignant as the silence to my first question: “Has anyone told her husband she’s dying?”
Lindsey Ulin is a palliative care physician and assistant professor of medicine at UT Southwestern Medical Center, and storyteller. Her writing is featured in ABC News, Good Morning America, The Boston Globe, and STAT News. Ulin has been a guest commentator for NBC Nightly News, US News & World Report, The Wall Street Journal, The Huffington Post, Yahoo Life, and Cancer Today.