Slowing to listen at the end of life

Marcia sat up on the side of the bed, a hand on each knee, and braced herself as she leaned forward to open the space in her chest for more air. At 52, she was dying of ovarian cancer that had spread to her liver. The critical organ had failed, causing excess fluid to gather around it, and her belly was so swollen that it pushed her lungs high into her chest where they pancaked, leaving little room to breathe.

Even before I stepped into her room, I could see that it wasn’t just Marcia’s belly that was swollen. Even her limbs were blown up, overstretched, as if she might pop. Her face was wan and tiny, like it didn’t fit her new body. I was shocked by the change in her appearance in just a month’s time.

I also felt something else: I was frustrated that she was back.

I’d been Marcia’s doctor the last few times she had come into the hospital, so she reappeared on my patient census. But the procedure she required to drain the excess liquid around her middle didn’t require hospitalization. She could be at home with a hospice team to meet those needs, not here on my service.

Each morning when I looked at my long list of assigned patients, I felt anxious when I saw the names of those who I knew needed more of my time, especially if they were near the end of life. As far as Marcia was concerned, she was not going to die, which increased my dread. Her body had a different opinion. I would have to start over with a conversation that had previously gone nowhere, a conversation I was expected to have.

On her prior admission, Marcia had come in similarly short of breath. I had arrived at her room at the same time as her oncologist. Dr. Jones, as I’ll call him, was well-liked for his affable way and the ease with which he connected to patients. But when we met outside the room his face looked tense, his jaw taut. As a colleague, Dr. Jones usually put an arm around your shoulder or had a joke to tell. But today he was all business.

As far as Marcia was concerned, she was not going to die, which increased my dread. Her body had a different opinion.

Before we entered, eyes on his clipboard, he said, “She’s not going to like what I have to say. The chemo is not working anymore. I don’t have anything else to offer.”

We walked in together and stood at the side of the bed where Marcia lay bathed in the Southern California sun streaming through a gap in the curtains. Her pale skin glowed in the light. She looked ethereal and peaceful, as though subconsciously defying our errand.

In an unusually perfunctory way, Dr. Jones started to tell Marcia how things were.

“The scans show the cancer is still growing…” he said, as she tried to lock onto his eyes with her determined gaze.

“So what do we try now?” she asked, cutting him off. “What’s next?”

“Well, there is a pill we could try,” he offered, sheepishly, twisting his hands together and lowering his gaze to the floor.

I closed my eyes. He was not going to tell her the whole truth.

What he was suggesting was unlikely to change the course of her disease, he knew that. But the whole truth would require a fraught conversation, one that would take time his overwhelming schedule did not allow.

“Okay,” said Marcia. “Great. Can I start it today?”

“Sure,” he replied, then as he turned to go, mumbled, “I’ll let your nurse know.”

His blue scrubs disappeared through the door, on to the next patient, leaving me with Marcia. As a hospitalist, my job was to get us all on the same page. I had to establish a plan.

“So, you heard about the CAT scan results?” I asked. “That the chemo hasn’t been able to hold the cancer at bay?”

“But he said there’s a pill,” she added quickly.

“Yes, there is.” I paused to consider my words. “But it might be good to ask him what the chances are that it’ll work.”

“I’ll take my chances. I’m not done fighting.”

Her tone had turned sharp. I felt dismissed. After a quick physical exam and a promise to order some pain medication, I left.

She was “in denial,” as we used to say—although I now recognize the judgmental tone in those words. It’s a cold way to describe the emotions of a person struggling to accept the hardest truth. She seemed so implacable, so closed off to the likelihood that things were just not going to get better. It wasn’t helpful that Dr. Jones was unwilling to lay out what we both knew to be true. I wasn’t at all sure how to nudge her closer to accepting her situation.

Hospitalists—doctors who exclusively care for those admitted to the hospital—are taught to think about plans for a patient’s discharge as soon as they arrive, especially if they are in their last months of life. End-of-life care is expensive—Americans spent $365 billion on such care in 2018 alone. Insurance does not always pay for the costs of end-of-life hospitalization, leaving hospitals and patients responsible for the difference.

Hospitalists are encouraged to help patients like Marcia accept hospice when it’s clear treatment is not going to impact survival or help quality of life. Hospice care is delivered by a team of providers, mostly at one’s home and completely covered by insurance. It is the most responsive, comprehensive kind of care that exists for end-of-life.

But working with patients on these kinds of decisions takes dedicated time that is hard to find. Between visits, order entry, documentation, meetings, and coordination of care, hospital doctors are lucky to find 15 minutes to spend in a conversation. And successfully navigating discussions about the end of life required skill and for some, training.

I had always thought of myself as compassionate. I had built rapport easily with patients in 15 years as an attending physician before Marcia came into my life. But I had also felt increasingly stressed by the expectations for productivity and the dozens of daily clicks required to navigate patient care through electronic records. A focus on efficiency and the bottom line seemed to distance us from the lives in front of us, lives often shattered by the diseases that threatened to overtake them. Patients and their families were often left to wade through their devastation without the time and space to process it, forced by the system to make decisions before they were ready.

A focus on efficiency and the bottom line seemed to distance us from the lives in front of us, lives often shattered by the diseases that threatened to overtake them.

Medicine is losing the softer part, the basic human part, that connects us. As William Osler, known as a ‘father of modern medicine’ for his role in getting students out of books and to the bedside of patients, said in 1914, “The practice of medicine is an art, not a trade; a calling, not a business; a calling in which your heart will be exercised equally with your head.” In the long hours I spent pounding the hospital floors with rushed steps, overwhelmed by demands, in the same hospital where I had been trained to care with scientific rigor, but also with an open heart, I had lost something that Marcia was about to unearth.

When Marcia was readmitted, I didn’t pull up a chair when I entered the room because I knew it had to be quick. I doubted anything had changed in just four weeks about her desire to continue to “fight” her cancer. I stood at the side of the bed, my hands in the pockets of my long white coat, fiddling with my stethoscope. I asked her how she was feeling, already knowing the answer as I watched her gasp and shudder with each breath.

“I just need the procedure, can they get here soon?” She said, her voice airy and halting with each syllable.

“Yes, of course,” I said, “I’ll track the team down. They will come here to your bedside.”

“Great. I’ll be waiting. I want to get it done so I can go home.”

My chest tightened as I walked away, scribbling a note on the paper crammed in my pocket – a reminder to track down the procedure team ASAP. They would do the paracentesis, inserting a needle in her bloated belly. Once the tension was relieved, she’d be calling immediately to be discharged. I was familiar with her pattern but felt a discomfort that was new. I couldn’t shake the sense that something was wrong between my patient and me.

Susan, a palliative care doctor, was my new friend. I had met her six months prior when we ended up side-by-side reading electronic records in the ICU. Her gently-lined face which peeked out from beneath a blonde bob was so animated and warm I instantly decided to share what was on my mind: “What do you think: should I go to the team Happy Hour or meet up with my new boyfriend after work?”

Susan stopped what she was doing and looked at me like I had two heads: “Duh. Go with the guy!” My suspicions were confirmed. I had found my new person.

As I got to know Susan, I also started to notice how differently we practiced medicine. I emerged unsettled from my latest encounter with Marcia and spotted Susan down the hall. She was settling into a chair typing notes outside the room she had just left when the patient inside, as if trying to pull her back in, sang out an impassioned, lyrical goodbye.

Moved, Susan left the keyboard behind, her fingers and lips throwing a dramatic air kiss that whooshed to land right on her patient’s smiling face.

As I watched, I remembered Susan always pulled up a chair to be close to the patient, reaching out to them in their bed, her hand coming to rest on an arm or a knee. She never rushed out of a room because things got tense. It also struck me that while Susan was certainly an emotional person, and deeply connected to her patients, she was unperturbed by what resulted from her visits. She had no agenda. Unlike me, she was unconcerned with anyone’s expectation of what she should achieve in that room beyond responding to what the patient needed in that moment. I always knew when Susan was in a nearby room because laughter streamed into the hallways, shaking things up on the dour stretch of rooms filled with patients in their last days and weeks.

Susan possessed something I had lost. Embedded in the palliative care mindset is the knowledge that you cannot force an outcome when dealing with human emotion. There is no timeline on finding acceptance before death. The palliative credo insists you meet patients where they are, not where you want them to be. You may artfully address the wrenching reality that a patient’s life is creeping towards its end, but it will be the patient who leads the way. Every time. It is the patient who determines how far you can travel together on this intimate journey and how long it will take.

That day, in Susan’s gentle bearing and her humble approach, and in Marcia’s resistance to being told where she should be instead of where she was, I was reminded of the fundamental truth that medicine should always center the patient.

The palliative credo insists you meet patients where they are, not where you want them to be. You may artfully address the wrenching reality that a patient’s life is creeping towards its end, but it will be the patient who leads the way.

The Center to Advance Palliative Care, a national body established in 1999, has led the way in educating patients, families, and the healthcare establishment, about the discipline. They define palliative care as “specialized medical care for people living with serious illness. This type of care is focused on providing relief from the symptoms and the stress of the illness. The goal is to improve the quality of life for both the patient and the family…Palliative care is based on the needs of the patient.” Any patient who has an advanced form of a life-threatening disease is appropriate for palliative care. It is team-based and always includes providers who are experts in mental health and spiritual care. The field has exploded in the past 15 years and more than 1700 hospitals with over 50 beds have a specialized team at this time. There has also been a movement to create community-based programs to meet patients where they are—in clinics, in nursing facilities, and at home.

The rise of palliative care can be viewed as a response to the increasingly impersonal and fragmented direction that modern medicine has taken. As many physicians have lost the time and the support to build and sustain nurturing bonds with their patients— especially as patients get more ill and needy—palliative care teams aim to fill the gaps, providing a space for grief-laden decisions to be made with support, and without haste. As hospitalists, we often called in the palliative care team when patients like Marcia were struggling to accept their situation, to help create that bond that we somehow couldn’t—especially if we felt, as I did, that we weren’t making progress.

I had loved being a hospitalist at first. I believed that we were providing excellent care for our patients. Some primary care physicians struggled to stay up to date when it came to the management of urgent conditions. We were at the cutting edge, aware of the guidelines for hospital-level care, and we were on-site should a change in condition ensue. So many nights on call I rushed to the bedside, able to successfully help correct a life-threatening heart arrhythmia or identify a new blood clot or infection, and in the process save a life. But when you treat patients in crisis, especially with terminal conditions, you are not only treating a body full of organs, but also a complex being composed of layers of emotional and psychic needs. I had become so bogged down in the physical, I had nearly forgotten about one of the most important parts of my job: human connection.

I went back to Marcia that day, after the fluid had been drained, and pulled up a chair. I finally asked her the most important questions, the ones that told me who she was and what really mattered to her. I noticed the blue of her eyes first, and how they shone as she told me about her husband at home, their three grown children, the guitar that leaned against the bed, unplayed in her absence. And the conversion van in the driveway, waiting for that last road trip, the goal that kept her fighting for her life. They were singers, I learned, she and her husband, and Marcia was unable to give up the hope that they would travel the country again, opening their hearts and voices to fans seated at small round tables with sawdust under their boots, listening while they made music together.

She had been a problem to be solved. Now around those blue eyes was a fuller person, a fuller life, and a fuller loss.

I sat still as I listened for as long as she took, my hands folded and slightly shaking in my lap as my body adjusted to the shift in my energy, like the whirring down of an engine that had been so long running at full throttle.

When Marcia was done talking, worn out from the exertion and the emotion it stirred, I stood up to go. “Thank you for sharing so much with me,” I said. “I’ll get your discharge paperwork ready now.”

As I left Marcia, she drifted into a nap. I felt like I’d done a better job. A shift had occurred. But the time I had taken had a cost. So many patients left to see. The pressure in my chest grew as I rushed from room to room, from person to person, like working an assembly line. I couldn’t find the time to ask each of them the crucial questions that now poured into my brain. I felt suffocated, trapped, as everything I needed to do a good job now rose up like floodwater.

I was drowning.

I had to make a change. I could not be the doctor or the person I wanted to be in the configuration of my job as it was. I needed more time, patient by patient. They deserved more time.

Several weeks later, an elderly woman who had suffered a stroke was placed in my care. She could not speak or eat. Her busy son, a physician at my institution, had the task of deciding if she would want a feeding tube. He struggled both to decide and to find time to visit. I recognized his struggle to slow down and focus on the hardest but most important things. Her hair was in a grey crew cut, and her deep brown eyes stared at the wall, her face unmoving, rigidly set.

This time, I was determined to get close to my patient. I pulled up a chair and took her hand, the one unaffected by her neurologic event, and warmed it with mine. I described the situation, watching for a sign. Her knuckles turned pale as she gripped my hand, reluctant to let it go. I started to come in on the weekends, even when I was off, just to be sure someone sat with her for part of the day. One Saturday morning when I arrived there were two women hunched by her bed pulling out photograph after photograph which they held up close for her to see. Pictures of her late husband, her children, her grandchildren. And while she didn’t exactly smile, the tense lines on her forehead slightly softened. It took time for my patient’s son to decide what to do. And although my boss understood that there is only so much we can push, I was urged to move the process along, to come up with a plan.

But I didn’t. I couldn’t.

Although my boss understood that there is only so much we can push, I was urged to move the process along, to come up with a plan. But I didn’t. I couldn’t.

I realized then I could no longer be a hospitalist. At 45 years old, recently divorced, with three young children, I did what I needed to do to become an expert in palliative care. Between my weeks on-service in the hospital, I travelled to Boston and Houston to study with those who were immersed in this kind of medicine that focused on communication, and the art and science of symptom management, also key to palliative care practice. At its core was the need to listen to patients and their families in a very different way than I had before. Radical listening is a practice, a way of being that enhances connection and understanding between people. Professor Ralina Joseph at the University of Washington describes it as a type of engagement that “emphasizes listening without judgment, keeping silent and giving your full attention so that the speaker will continue sharing. Radical listening means quieting your brain and resisting the instinct to respond with your own thoughts.”

Radical listening is the essence of palliative care. As I studied communication skills and learned how to manage pain, nausea, and so many other symptoms, with doctors from all over the world dedicated to enhancing care and comfort for patients and families with advanced disease, I fundamentally changed. It seemed impossible to believe that just months earlier, I wasn’t able, or willing, to truly slow down and listen to my patients. I was so busy dreading the difficult conversation about the end in end-of-life that I failed to recognize that life has an essential place in that conversation as well.

I became board-certified in palliative care and soon had the opportunity to become a palliative care physician full time, and I took it. When pain and other symptoms are well-managed, and when the time is taken to understand patients’ goals and wishes, they tend to choose less invasive medical interventions at the end of their lives. It’s the proverbial win-win situation and numerous studies showing the cost-savings of palliative care interventions. It is in part for that reason, that palliative care departments and training programs have become so widespread.

Whenever I reflect on my career path, I think about Marcia. In her dazzling blue eyes and the love she had for the life she struggled to let go, I recognized something I had lost. Rushing through the days, and the people in their beds, I was skimming the surface, losing the connection that brought me to medicine in the first place.

Marcia never did get that last road trip. But I hope she found peace in the strength of her voice, her insistence on being heard—and in facing death in a way that she chose.