What do you do when a patient asks you a question you don’t know how to answer? What strategies do you employ when faced with an uncomfortable reality with a patient?
“What do I do?” Janet reached her hand out me. She had walked to the bathroom with minor assistance, but when she got back into bed, she was overwhelmed by shortness of breath. The pulse oximeter pinged repeatedly and the pink light flashed in time to it: ping, flash 82%; ping, flash 83%; ping, flash 86%. I silenced the alarm and sat down in the bedside chair. In truth, the same words were going through my head. What do I do, what do I say?
I had a long-standing relationship with Janet. Her metastatic breast cancer was diagnosed when she was in her early 30s, and she had been fighting it for more than 10 years. Her oncologist controlled her cancer with chemo and radiation while Janet refused to let cancer control her life. She embodied the word fighter as she trudged through treatment after treatment, fighting beyond the limits of her cancer and treatments. She outlived all of the prognostications and now had widespread metastatic disease: bone mets, lung mets, brain mets. I looked down at her as she tried to rest against the pillow. One hand wrapped around the oxygen mask, which she pressed to her face. She was cushnoid from steroids, one eye drooped from brain lesions, and she was bald and no longer wrapped her head in stylish scarves and hats. Not at all the put-together career woman she prided herself as. It came down to this: there was nothing left to do. Up until then her cancer fight was directed toward the next treatment, she embraced them all and somehow had thrived. She was valiant, a true hero. But she was losing the battle. Although it was clear at the time of diagnosis what the end would likely be, her job was to postpone it as long as possible. But her marathon was about to end, and she struggled to accept that there was nothing left to do. Her entire strategy toward her cancer was about action. Now the only action left was her dying.
“What do I do?” She repeated, searching my eyes as if I had an answer. I knew there were different levels to her question. On one hand, “What do I do?” was a question about her difficulty breathing. But “What do I do?” was also an existential question. The first question was easier than second so I started there. I gently rubbed her hand, my thumb circling over the thin skin on the back. I lowered my voice, slowed the pace of my words, “Breathe Janet, breathe. Let the oxygen go to work.” Then, “Easy breaths. You’re okay.” Her breathing eased and she relaxed. The silenced pulse ox flashed 93%. I stayed for a few more minutes without saying anything more. She was too exhausted for talk but smiled and closed her eyes.
I walked out to the nurse’s station. Hailey, her nurse, asked how Janet was doing. I told her what she had asked. “I didn’t know what to say,” I said.
“Oh,” Hailey said, “You have trouble figuring out what to say, too?” Her surprise surprised me.
I told her, “There are plenty of times I don’t know what to say.” I didn’t have all the answers. I’d known Janet for many years. I’d been a nurse for more years than Hailey, to her that meant I would know what to say. I shrugged. I wished it were that simple.
“That makes me feel better,” said Hailey. We laughed then, a nervous agreement in our discomfort. What was interesting was that both of us thought there was a response to Janet’s question. But there was no response; in some ways, the question was rhetorical. There was nothing to do, that was what made it unanswerable.
I had offered her comfort, a warm hand, a willingness to stay in spite of the uneasiness of the moment. But should I have said something? I walked away from the nurse’s station wondering if I had done enough. I had supported Janet over the years, working with her through treatments and symptom control. I watched her fight her disease long after I would have given up. There were other caregivers who believed Janet was unrealistic or in denial. But whenever Janet started a new treatment, she always said she knew it was about buying more time. She could clearly articulate the pros and cons and understood her prognosis yet still believed in fighting. Even so she was surprised when the end drew near.
I listened to a TED talk recently given by Sebastian Junger.1 He had been embedded with a company of soldiers in Afghanistan. As part of his presentation, he talked about one of the many times he was shot at. The bullet hit the wall close to his head, and he felt the splinters of wood on his face before he heard the sound of the shot. He explained that a bullet moves faster than the speed of sound, so the sound arrives after the impact. The sequencing meant there was no time to flinch. By the time he realized he’d been shot at, it was past the time to duck.
As I thought about Janet, I remembered that TED talk. She lived like Junger and the soldiers he was embedded with. They knew bullets were directed at them, yet they hit before they realized what had happened. When Janet was in the hospital and short of breath, a part of her was surprised. What happened to her body happened before her brain could process it, like a bullet she didn’t hear coming. She had ended up where she knew she would yet the end came upon her suddenly.
The communication challenge with Janet started when I met her. From the beginning, she made it clear that she intended to fight and would not give up. “I may not be able to beat this but no one is going to keep me from trying.” I never pushed her into what sounded like a more realistic approach. I didn’t push her to accept that she would not be cured. She was a force of nature, and it was her cancer journey. She was the driver, and I was a passenger. In truth, neither of us had a map.
That morning it was easy to second-guess myself. Had any of our conversations been misleading? Should I have been surprised by her surprise? The uncomfortable situation made me second-guess myself. I did not know what to do, or what to say. Maybe that was ok. Maybe I communicated more by sitting and holding her hand than I ever would have if I tried to pretend we weren’t at the place we were.
I wish there had been something else to do. I wish there were another treatment, a trial, or some alternative. But there wasn’t. “What do I do?” To answer both levels of that question all I needed to do was stay where I was until she caught up to me. And I communicated that by holding her hand and letting her know I was there. That was what I did.
1. Junger S. Why veterans miss war. TED Ideas worth spreading* Web site. https://www.ted.com/talks/sebastian_junger_why_veterans_miss_war. Posted May 2014. Accessed June 30, 2014.
How would you have answered Janet’s question?
What strategies do you employ when faced with an uncomfortable reality with a patient?
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