Overview

A palliative care physician remembers difficult lessons about 'difficult' patients and how she improved in their care throughout her career.

Reading Time: 6 minutes

2011

“Thanks for finally getting here!” Lonnie hissed from her hospital bed as I slipped through the door.

I thought better of turning on the light.

“I’m so sorry. I’ve been trying to get here all night. It’s nice to meet you. I’m Dr. Makoff, the hospitalist.”

“I know. They told me you’d be coming—hours ago.”

“Again, I’m sorry. How are you doing?” 

I stood at the side of her bed, my shoulders sagging from the hour and the weight of papers, pens, and stethoscope, crammed into the pockets of the long white coat over my kelly green scrubs. I didn’t have the energy for a “difficult” patient. I’d been up all night admitting patients to the hospital with diagnoses like pneumonia and heart failure.

Lonnie was in her twenties. She had a rare disease that frequently flared up. I guessed her overnight bag was always packed in a closet by the front door.

“If I was good I wouldn’t be here. I’m not one of those patients who enjoys being in the hospital.” The sharpness was not fading from her voice.

“I just need to ask you a few questions so I can get your usual meds ordered,” I mumbled.

What I really needed was a nap in the tiny bed in the on-call room upstairs. Or at least a cup of coffee from the Starbucks in the lobby.

“I have a question for you,” she said. I couldn’t see her face, but something in her tone made my nerves stand on end. “Have you ever seen this disease before?”

“Not often, but…yes,” I answered. My jaw muscles tensed as I tried to remember whether that was true, or if I had just read about it on UpToDate, the favored informational platform for doctors.

Lonnie seemed to sense my hesitation. “Am I too complicated for you, Doctor?”

Suddenly I felt breathless, oxygen escaping my lungs like a punctured balloon. I couldn’t respond, but I knew I had to get away. I turned and pushed through the door, my weak legs collapsing me into a tiny seat by the nursing station. 

I electronically ordered the medications she’d been on the last time she was in, and within hours signed her out to the day doctor to take over her care.

I would never see her again.


2018

“Let’s be honest. You don’t want to be here.” I was perched on a stool, failing to get my new patient Sarah to talk to me. 

“Nope.”

She stared down at the not-as-clean-as-it-should-have-been-for-a-cancer-center floor, her arms crossed tightly across her chest, her brown-gray hair falling in a curtain over her forty-year-old face. 

I took a deep breath. “If you don’t think I can help you, you are free to leave,” I said gently.

“Oh, am I?” Sarah chuckled darkly. “I haven’t been able to get out of here for five years, and now you say I can just go?” Then the tears came, rolling in rapid waves down her cheeks. “I’m sorry. I never do that. I don’t know what happened,” she muttered, wiping her face on her long sleeves, straightening herself up.

“No need to apologize.”

Leaning against her chair legs were cloth bags filled with bottles of water, snacks, and a crumpled sweater. She thought she was getting her treatment that day. When she got to the cancer center, the infusion nurse gave her the news that her ovarian cancer had spread and that her doctor had canceled the chemo. 

“They’ve all given up on me. But I can’t give up.” 

Her eyes bored into mine. She seemed furious. Accusing, as if daring me to prove her wrong. I was familiar with this scenario, this stance. I knew that terror lay just beneath the rage. At that moment, her anger was the only power she felt she had.

“Sarah, how incredibly hard it must be to feel you’re all alone in this.”

“I just want to get out of here.” She moved to get up, her voice desperate but her body unable to comply. She lifted herself slowly from the chair, pelvis first, one hand pressing into her belly, the other girding herself from below. Her face fell into a grimace. She shuffled to the threshold and then turned back: “But can you give me something for the pain?”

“Yes. But I’ll have to ask a few questions about what’s hurting you. Okay?”

Sarah groaned, moved back in, and eased herself down into the chair, her belongings dropping and scattering around her feet: “Yeah.”

In the days and weeks that followed, we got Sarah’s pain under control. I learned that she had a young daughter. When the cancer kept growing, our palliative care team helped Sarah plan for her daughter’s future without her. She died not long after. I never forgot her.

2014

The sign on the easel outside the conference room said “Palliative Care Communication.”

Small plastic chairs that reminded me of kindergarten were placed in circles all over the large room with the dark blue carpet. I tried to settle into the uncomfortable seat.

At the front of the auditorium stood a female doctor with wavy brown hair in a business casual blouse and pants. 

“Morning and welcome,” she began. “You’ll each be given scenarios, roles to play, and a conversation guide. You may play a patient, an angry father, a doting husband, or a suddenly-present estranged aunt who has all the answers. We’re going to learn how to find out what patients want and need when they’re seriously ill. And we’re going to learn how to talk to their families.”

I felt sick to my stomach. I hated roleplays. I was scared. I knew I’d be revealing to others what I’d already gathered about myself—that I wasn’t good at this.

But what ended up playing out in the circle that day changed my career. 

It was so simple really, this guide, and yet so foreign to anything I’d been taught in my medical education or observed in practice. While following a checklist felt awkward at first, we all needed it. None of us in that room, many like me with decades of experience, had learned how to openly, deeply, and effectively engage with the patients we saw every day. Or how to talk about dying.

The elements of the guide were simple: Set up the conversation. Ask for permission to bring up difficult topics. Ask for the patient’s understanding of their healthcare situation. Ask how much information they want to hear. Let them defer to others in their life if they didn’t want to hear it. Explore their goals, fears, worries, sources of strength, the critical faculties needed to make their life worth living, and trade-offs they were willing to make if things got worse. Identify their support systems. Summarize and check in at the end of the discussion. 

Woven into the questions were tips for how to engage: use open-ended questions, speak less than you listen, share information in sensitive ways (“I’m hoping for the best, but am worried things might get worse”), sit at eye level with patients. Always name the emotion in the room. And regardless of what emerges, don’t take it personally. Ever.

Above all, make sure your patient is okay before you leave them. 

Before I even played any part that day, just reading the words on the pale purple card stock paper brought me back to that night with Lonnie. I realized exactly what I’d done wrong. 

Lonnie’s anger, her frustration, even her verbal attacks were never about me. Her life had been overtaken by illness. She was in and out of a hospital that, despite all of its frustrating uncertainties and inefficiencies, had become her second home. And I’d kept her waiting. Maybe she’d been in pain or was upset about any number of things. But I hadn’t bothered to find out. 

I volunteered to play doctor in a circle that day, and at every other conference I attended from that point on, until I knew what I was doing. It wasn’t natural at first, negotiating these situations, these emotions emerging from both inside and out, but I finally wanted to lay bare my deficiencies. I wanted to get better. 

2020

“So what makes a patient difficult?” 

I’m asking the question of a dozen Zoom squares filled by palliative care nurses.

Silence.

No one wants to share. They sense that it’s a trick question.

“It’s how you feel when you’re with them that’s difficult,” I said at last. “And luckily, you can learn to manage that.” 

That day, I asked the group to remember that they are not the ones lying in the hospital bed, freezing on the exam room table, or digesting life-shattering news and feelings. And I invited them to realize that they had the only tool they needed to transform most every challenging patient interaction: themselves. 

Palliative care is for people with serious illnesses, but the communication skills taught to provide this kind of care are applicable to all doctor-patient interactions. Everyone deserves to have their hopes and fears, their wishes and red lines, drawn up and acknowledged. 

And everyone who serves in healthcare is responsible for managing their own feelings so they don’t interfere with patient care. It is up to us to do the work to show up, internally fortified and ready to support them. If we can’t, we shouldn’t be there at all. 

I knew this by the time I met Sarah. I knew that if I did not allow her all the space she needed for her feelings, however they came out, we’d never get to anything that mattered. We don’t know what our patients have been through when we meet them, but we know they are in need and vulnerable, because they are there in front of us. I’d failed Lonnie, and in the process, I’d failed my vow as a doctor to do no harm.

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Eve Louise Makoff is an internal medicine and palliative care physician. She has published both personal and medicine related essays and poetry. She is working on her master’s degree at USC-Keck school...