This is the third guest essay by Toby Campbell, M.D.
Dr. Campbell is a pulmonary oncologist and pain management consultant who teaches at the University of Wisconsin.
In this series of essays, he shares his experience helping patients and their families going through the process of dying from terminal illness.
Here’s Dr. Campbell:
If you can think of one hundred ways for a person to die, then I have seen at least as many reactions from patients who learn they are dying. As an oncologist, I have the responsibility of identifying and delivering the worst possible news to people, and I have witnessed an awesome range of reactions, from whispered regret to outrage. It is my job to prepare myself with the most accurate information and then lead all of us through this life-altering conversation, making certain that all voices are heard.
It must be an awful experience, being the unfortunate subject of this “it’s not curable” conversation. Sometimes I see rationalization (“at least I…”) and sometimes resignation (“everyone has to die someday…”) and commonly rejection (“there must be something you can do”). Whatever the verbal response, there is always an emotional response–often the strongest emotion of that patient’s entire life (“Who the fuck are you to tell me that?”).
Quite naturally, a patient’s first reaction is to ask about treatment options: “What are we going to do?” The patient is usually hoping, often desperately, to discover that I have a way out of this situation, in spite of what I just said. Our patients may even implore us to “give me some hope”–“hope” usually means “treatment”–even before they have a firm grasp on the goals for treatment. The concept of life-prolonging or palliative therapy may be so clear and familiar to oncologists, yet it is easily misunderstood by a patient desperate for a clear path to a long future. The temptation, of course, is to accept their suggestion and follow them into the routine dialogue about the standard of care, chemotherapy, or the current clinical trial, but this often obscures the prognostic implications. The rotten “this is incurable” bit gets washed away like so much water under the bridge. I think allowing the conversation to proceed in this order is a big part of the reason patients and caregivers routinely misunderstand their prognosis and the goals of therapy1. So I have learned to slow down and to ask permission to wait for a moment before we talk about treatment. “We will definitely talk about treatment,” I tell them, “But before we do, can I check in on you? How are doing with this news?”
I have come to believe that my responsibility to my patient in this daily (for me) and once-in-a-lifetime (for them) conversation requires me to carefully transfer a piece of completely unwelcome knowledge about disease and mortality. Only then can we honestly consider, and plan for, their future. In this moment we create, we have to spend some time processing, and beginning to cope, with the news. We have to jump into the river together. My goal is for them to fully understand what I am telling them. They may not be able to take it in unless I create and hold an emotional space for the patient and family to process, to grieve, or weep, or thrash.
When you have this conversation as frequently as I do, you see all these reactions in their most raw and honest and fresh form. I see the moment someone truly registers the mortal implications of what I am telling them. I see them break, as I gently apply the pressure, like a pretzel popping in my hands. If I press steadily, and slowly, with just enough force, the pretzel pops into pieces but doesn’t crumble. If I do my job well, my patients can still see me as a caring, even loving, presence rather than an aggressor. With my patient Jake, I found it difficult to tell in the moment if I had succeeded. But ultimately he demonstrated his understanding, incorporated his impending mortality, and proceeded to live in the face of it.
When I told Jake, a 65-year-old veteran with rough hands and relapsed mesothelioma, he sat stock still and silent. For a long time, the only sound was his sandpaper hands rubbing slowly together as he shook his head no. Then, hands now rubbing and then tapping his thighs, he began to nod. His wife, Carol, sat by his side but never touched him and never spoke. It occurred to me they had coped with difficult things before and she knew what he needed from her. Neither of them cried. The tension was so thick I may have held my breath as I took Carol’s cue and held the silence.
Jake took in a huge breath and let out a long sigh. Then he abruptly stood and offered me his outstretched hand for a shake.
“Well, Doc, I’d better be going.”
Shocked, I said with a little chuckle, “What? Jake, this is a different reaction than I was expecting.” He just looked at me, so I added, “How are you doing with this?”
“Oh, okay, I guess. I need to get out of here. I need to buy a Corvette. I’m going to get a brand new one. Red. It is the one thing I always wanted to do, own a Corvette. I want to thank you for helping me realize it’s time to buy a new car.” Carol, with a half-smile, shook her head, gazing at her lap.
Over the next couple years as we treated his mesothelioma, Jake proved to be a man of few words. He lived his remaining time with conviction and a clear sense of purpose and he often thanked me for being honest. “I appreciate that I could drive my corvette a lot longer than I ever imagined.”
I carry these conversations with me, and the older I get, the more stories I have to carry. Now, in my fifteenth year as an attending oncologist, I am feeling the accumulated weight of tragedy and my strategies to lighten my load seem limited to playing basketball and family time and eating out. It all makes me wonder: is my part in this work a privilege? An opportunity? A burden?
The moment prognostic awareness dawns on someone is a scary and tenuous point, in both the conversation and our relationship. I expect strong emotions so much that their absence is how I realize I haven’t yet done my job. Because breaking people is, in a way, my job. I know from experience they will pick up the pieces and reform, both in the moment and over the duration, into something new and different–usually something stronger, but not always. Sometimes I fail to navigate this moment just right for a particular person. If so, I usually discover I’ve broken not only the patient but our relationship—but I only learn this later, when the patient asks me never to return or goes to see a different doctor for follow-up.
With Rhonda, I think I went too far on the first visit. While I treated her with chemotherapy and she lived nearly two years, I was never able to regain the trust to broach the subject of mortality again. Even when she was approaching the very end of her life and I tried, in vain, to discuss the help a hospice agency could provide, I managed only to push Rhonda and her family away.
Rhonda was a 58-year-old elementary school cafeteria worker with purple hair and a love for dancing. When I told her, she stared at me, then looked at her family: she had brought at least ten family members to the visit today, including a 2-year-old grandchild who was currently scooting around the hallway outside the room in a toy car. The family’s eyes were darting between each other and back to me, silently registering the information.
“You all are going to be okay,” Rhonda pronounced.
And with that, like a wave they all rose and surrounded her. Her sisters were at each shoulder, leaning down to hold her. A daughter was on her knees in front of her, crawling up into her lap, sobbing and wailing uncontrollably. Others were in the chairs next to her. With no room to reach her, a daughter fell to her knees on the floor in front of me, arms wrapped tight around my legs and her head in my lap. She was shaking her head between my legs as she screamed over and over “No, Jesus. No, Jesus. NO JESUS NO JESUS NO JESUS.”
Typically, my emotional and physical needs in these crucible moments are minimal to absent. But right then, in this compromised position with an unknown woman’s head in my lap, I had a moment of terror all my own: what if someone walked in here right now? And how did I comfort her? Was there any safe place to touch her right now? Certainly not her head, but if I leaned forward to touch her shoulder…
Rhonda saved the day. “Tamara, you get up,” she said. “Tamara: get off the doctor. Come over here and give me a hug.” Rhonda looked at me as if to say, “What can you do?”
Rhonda, her eyes shiny but not flowing, looked like a person who wanted to break down, to embrace her sadness, but who worried about the effect it would have on this roomful of crushed souls. In future visits, Rhonda would bring a sister and a daughter, her strongest protectors. They would remind me as soon as I entered the room that they were there to “talk only about good news.” Even after all chemotherapy was exhausted and I was seeing her at home on video visits, we never captured another moment of intimate conversation. Her family was shocked when she died. “I’m sure you’re an excellent oncologist with the technical stuff,” they scolded me, “but you really need to work on your bedside manner.”
Even as I do my very best, I have cases like Rhonda’s that gouge into the core of my identity as a physician and send me reeling. I felt doubt about my oncologic and communication skills, drank too much, and wondered if continuing as a clinician was pointless. I could recognize the symptoms of fatigue and burnout. Since the pandemic, and some chronic knee pain, has limited my basketball playing, I decided to try another method.
I have been writing for 25 years informally as a mechanism to process and explore events that happen in my life. I decided to partner with a local author, editor, and writing instructor (MW2) to create a narrative workshop for myself, trainees, and colleagues as a tool for coping with being an oncologist. We worked collaboratively to develop a curriculum and agreed to include four core components to our workshop: writing, sharing with peers, editing, and a public reading.
The process of writing is often as significant as the finished work. Only as I wrote this essay did I realize my patients and I are in a similar fragile condition. They are dealing with the acute shock of facing mortality; I am carrying the accumulated burden of stories of loss. I sometimes feel dejected, even hopeless, in the face of my five new patient visits every week. Yet our patients expect us to be tireless crusaders, invulnerable to the slings and arrows of fortune. And I want to be, if not tireless, at least able to maintain my energy and enthusiasm for the day-to-day practice of oncology. So, like my patients, I have to create space to process and to grieve.
For me, writing and sharing stories with my colleagues is the safe space we create together in order for us to do what we must: allow ourselves to break. We write from prompts and learn writing techniques to help us explore and express ourselves. We edit to refine and retell the story to others but also to discover the elements in the story that are central to us. Finally, we read aloud one of our pieces publicly which, while anxiety provoking for all, feels like a critical step, for me, to ultimately letting a story go. By doing all of it together, we give our stories away and lighten the load. We have the opportunity to learn from one another, support one another, and re-form into something stronger and more resilient.
Sharing my written work publicly, as in this essay, is another step in admitting my own vulnerability and my desire to grieve and celebrate and heal. The partnership with a writing professional elevates the quality of the writing and of our experience. It also fosters our ties to the local community. For example, our public reading is at a locally owned bookstore where many graduates of the course now buy their books.
As an unanticipated side benefit, I think the writing class helps me be a better clinician: in learning more about story development, I find myself interviewing my patients with more attention to details about character and setting and story.
Each of these components of our process is important. Each contributes meaningfully to the end result of a more resilient community of clinicians.
Judy, a 74-year-old retired executive making a second career as an organic farmer, simply looked at me. She looked at me for a long time. Then her brow furrowed and head started shaking, a slight rhythmic oscillation, more like a tremor than a gesture.
Her husband reached out to take her hand and she looked at him, eyes wide and blank. And then back to me, her expression lost, eyes imploring.
“I don’t understand,” she said.
“Shocking, I know,” I replied.
“I’ve lived a good life. I’ve always eaten all the right things.” She had a yellow legal pad in front of her with what appeared to be pages of questions she’d been prepared to ask me, with spaces for writing my answers. She flipped through the pages, front to back and back again, looking for something to ask me. From what I could see as she flipped, I guessed her prepared questions were no longer relevant: How long might I expect the recovery to be after surgery? Do you have a wig salon? How soon after we finish treatment can we travel internationally?
She scratched her pencil on the paper as if taking notes but, from my vantage point, I could see it was just wordless jottings.
Here, in the sterile quiet of my office, it feels clear that what I do is, of course, both a privilege and a burden. Oncologists and palliative care clinicians are at high risk for burning out, doing this day in and day out, and I certainly feel the despair at times. It is through writing that I have come to an understanding that I have a choice to make: I can decide to consider this part of my job not the “dirty work” but a chance to have once-in-a-lifetime conversations every day. I have decided to accept responsibility for this messy task in order to skillfully and compassionately show my love for my patients. I realize “love” is a loaded word, but I chose it deliberately because love is messy and resilient; love accepts and trusts; love feels big enough to hold the weight of these special relationships. Those patients are fully aware and engaged when they choose to grant me access to their secret desires and sacred family spaces. We unite to plot against our common enemy. And we celebrate victories, large and small, along the way.
References:
1. Weeks JC, Catalano PJ, Cronin A, et al. Patients’ expectations about effects of chemotherapy for advanced cancer. N Engl J Med 2012;367:1616-25.
2. Madison Writers Studio Homepage. (Accessed 3/17/2022, at https://madisonwriters.com/our-team/michelle-wildgen.)
3. Komlos-Hrobsky E. Narrative Medicine for Doctors. Poets & Writers 2019:October 9, 2019.