Doctors Need To Talk About Death Instead Of Trying To Keep Patients Alive At Any Cost

Courtesy of HuffPost.com | By Kate McLean | Photo by David Pereiras / EYEEM via Getty Images | Originally Posted 01.24.2020 | Published 02. 27. 2020

“The elephant in the room is that many of our patients are dying and there is often nothing we can do to change that.”

There’s a saying that permeates surgical wards, filling the ears of any medical student or resident who is considering a career in surgery: You have to love the operating room more than you love sunshine, or you won’t make it.

There’s certainly truth to that statement. My days as a fellow in gynecologic oncology were filled with back-to-back surgical cases, frequently lasting late into the night. Perfecting our ability to methodically remove ovarian, uterine and cervical cancer was the focus of our training. We also learned how to prescribe chemotherapy to complement the surgery we were performing, but the elephant in the room was studiously ignored: Many of our patients were dying and there was often nothing we could do to change that.  

As the fellow, I was responsible for leading our team on rounds each day.  Sometimes that was easy and straightforward. We would prescribe antibiotics for pneumonia or a transfusion for anemia. Other times, doubt would creep into our little huddle of white coats.

For instance, I remember one patient who wasn’t responding to the fifth chemotherapy regimen we had tried for uterine cancer, and she spent most of her time curled on her hospital bed, clutching a plush cat toy because she so desperately missed her pets at home. Another’s patient’s cervical cancer had spread to her brain despite multiple treatments, and she was so sick she could barely muster the energy to hug her infant daughter. 

When we encountered situations like this, a hush would fall across our team and everyone’s eyes would slowly drift toward mine. Our supervisor might have been planning to give more chemotherapy or to operate yet again, but to those of us who spent the most time with the patients, that didn’t always feel right. More and more, I found myself having end-of-life conversations with those women.

“It’s time to send in the angel of death,” our new intern chuckled insensitively one morning, on just such an occasion. The chief resident silenced him with a withering stare but then turned to me with her brows raised. Apparently my reputation, and my unfortunate nickname, had spread further than I’d realized.  My behavior was atypical enough for a surgeon that it had started to attract attention.

The patient he was referencing had been diagnosed with ovarian cancer the year before and had been admitted to the hospital multiple times since, so we were already on a first-name basis. She had arrived for another admission a few hours earlier, but none of us had seen her yet.

“Kate! How are you?” she asked brightly as I entered her room, the rest of the team crowded in the doorway, watching.

“The important question is how are you?” I countered, humbled by her concern for my well-being when she herself was so ill. The makeup she was wearing did little to mask her pallor, and while most of her body was painfully thin, her belly was distended. The strip of skin visible between her sweatshirt and pajama pants was stretched tight and shiny.

She was hesitant. I sat on the edge of her bed and put my hand on her wrist in a gentle prompt. 

“I’m nauseated again,” she finally murmured.

“Are you managing to keep any food or liquid down?”

“I kept vomiting so I stopped even trying to take sips of water,” she reported, her shoulders slumping. “When I called the office, my doctor told me that I need more chemotherapy or maybe another surgery to unblock my gut. Is that what’s happening? The cancer has caused another blockage?”

Her cancer had initially responded well to surgery and the first few rounds of chemotherapy, but then it quickly returned. We had tried several other chemotherapeutic regimens, but all had failed to stop the tumors in her abdomen from growing. She’d been admitted four times in the last six months with bowel obstructions from the cancer. Each time, we would try a new treatment and it would help for a little while, but then the same symptoms would resurface.

“Yes, I’m afraid so,” I told her. “Your CT scan shows that a tumor is blocking your intestine, which explains why you feel so bad. Nothing is getting through like it should.” I wondered whether I should tell her how serious her condition was becoming, or if she would ask me on her own.

“What about this new chemotherapy you’re recommending?” she asked. “Will it finally make the cancer go away for good? Or will we need to remove it surgically?”

I now faced a difficult dilemma. What should I tell her? My supervisor had clearly laid out his plan when he told me she was coming for admission. However, I knew that the available data on patients like her suggested that her chances of responding to the treatment were incredibly low. And the chemotherapy would likely make her feel even worse. 

“I’m just the fellow — how about we review all this with our boss later today?” I responded, trying to keep any sign of internal struggle off my face. Throughout my fellowship, I’d had misgivings about operating and prescribing harsh drugs so close to the end of a patient’s life. But that was exactly what we were expected to do.

“You’re the one I see every morning when I’m here in the hospital,” she replied. “I want to know what you think.” She gave me a stern look. “You know how difficult that last round of chemo was for me ― I was in and out of the hospital for weeks.”

I took a deep breath and decided to be completely transparent.

“Honestly, I’m really conflicted,” I said. “I respect my boss’s judgment, but the studies I’ve read tell me that your cancer probably won’t shrink — at least not much — with any further chemo. And if we perform surgery to unblock things, since no chemo is likely to slow the growth of the cancer for long, you’ll probably just experience another blockage soon.” 

I followed her somber gaze as it appeared to wander out the window, through the skyscrapers downtown, all the way to the ocean. I could see frothy whitecaps kicked up by the strong breeze.

“Some patients feel like it’s worth it to them to go through the discomfort of surgery and the side effects of chemo if there is any chance it might help,” I continued. “They want to try everything possible, because, in medicine, we’re never 100% sure what might happen. However, once treatments become less likely to help, other patients would rather prioritize different things, such as pain relief and time out of the hospital with their family.” I paused carefully. “You know I’ll support you either way.” 

She turned back to me, suddenly focused again and nodding. “Why would anyone suggest a treatment that probably won’t help me?” she wondered out loud with no trace of bitterness.

“We want it to help,” I said, squelching the niggling, unpleasant thought in the back of my mind that our supervisor also got paid every time he ordered chemotherapy or performed surgery. “But that doesn’t mean it will. You know that. I know that.” 

I could feel her hand start to quiver on the bed next to me, and soon her shoulders were shaking as well.

I scooted closer and held her while she cried. Peach fuzz, which was just starting to regrow on her bald head, softly brushed against my cheek.

“I want to go home,” she whispered in my ear. 

“Of course,” I replied. “Let’s loop in the hospice nurse and get your nausea and pain under better control this morning, then try to get you out of here by tomorrow.”

I looked back at my team standing in the doorway and saw relief etched on their faces. This was what was best and we all knew it. We just hadn’t been trained on how to talk to patients about what happens when treatments fail ― about what happens when death is inevitable.

I later learned that our patient died peacefully at home about a week later, surrounded by those she loved most.

Surveys tell us that over 80% of Americans want to die at home. Despite this clear preference, less than 20% actually do. Progressive advancements in medicine have led to the temptation to discount its limitations, rather than to face the pain of acknowledging imminent death. Dying, which was once viewed as natural, is now seen as a medical transaction — one that we seem to hope technology can rescue us from completing. 

Some experts believe that the culture of American medicine is now centered on continuing to treat patients “regardless of the quality of life.” This has translated into increased costs, with cancer patients frequently receiving chemotherapy within 180 days of death, and with one-quarter of all Medicare dollars being spent during the final year of patients’ lives. 

Research demonstrates that terminally ill cancer patients who are put on mechanical ventilators or are admitted to intensive care have a worse quality of life than those who are not, and their caregivers are more likely to suffer from major depression. Doctors know better, however, from seeing this first hand.  When making decisions about their own care, for example, physicians are more likely than their patients to choose less aggressive treatments when terminally ill. 

Patients who are provided with complete information about their prognosis and treatment options elect to have less intervention than those placed on the “default treatment path.”  A recent physician poll showed that, while doctors believe it’s their responsibility to provide this information through end-of-life conversations, only approximately 30% have had any formal training in doing so. Physicians are therefore reluctant to have these conversations, even when their patients are severely ill.

The way I handled this conundrum as a fellow obviously wasn’t ideal — I should have worked harder to involve my supervisors. As we try to improve healthcare in this country, it will be crucial to expand the training doctors receive from focusing on intervention to thinking more broadly about their patients’ priorities.  We’ll also need to change medical culture, because loving the operating room more than sunshine isn’t enough. We surgeons must also be able to effectively communicate with our patients about death and put their wishes first.

Kate McLean is an obstetrician-gynecologist at the University of Washington Medicine in Seattle. She’s working on a memoir about practicing medicine in the U.S. and abroad in Tanzania.

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