Katherine E. Reeder-Hayes, MD, MBA, MSc
The ASCO Post is pleased to reproduce installments of Art of Oncology as published previously in the Journal of Clinical Oncology. These articles focus on the experience of suffering from cancer or of caring for people diagnosed with cancer, and they include narratives, topical essays, historical vignettes, poems, and photographic essays. To read more, visit ascopubs.org.
All he wanted was to go to Vegas. I knew Josh only at the end of his life, far into his story, after an old man’s cancer had already wreaked havoc on his young body. At the age of 29 years, he lay in an intensive care unit (ICU) bed, tethered to the wall and to his many medical providers by high-flow oxygen tubing and intermittent and continuous positive airway pressure to deliver as much oxygen as possible to his disease-swamped lungs.
His outpatient oncologist told me that like many adolescent and young adult patients with cancer, his attitude toward cancer treatment had been somewhat cavalier. He missed some appointments, declared he needed a day off on his birthday, and so on. But lately, he had been doing his best to make it to the clinic, and his oncologists had already tried two successive lines of therapy for his metastatic esophageal cancer. On his admission, scans showed striking progression of his disease in a short period. My oncology consult team was called in to assist with goals of care.
A Direct Question That Deserves a Direct Answer
One of our first orders of business was to deal with the question of his code status. As usual, I started the conversation by sharing what I had observed on his scans; my concern that his cancer was now at a point where more chemotherapy would not change its course; and my expectation that his lungs would soon become unable to take in enough oxygen, even with maximum external support. I explained that if our other best efforts failed, the only way to deliver more oxygen would be to intubate him and use a ventilator.
This conversation is usually somewhat of an art form, a gradual process that can evolve over days as I answer questions, elicit the patient’s goals and values, offer emotional support, and give the patient time to think. But in this case, my powers of persuasion had barely gotten warmed up when the patient interrupted me with a stern look.
“Doc, if you put me on a ventilator, am I going to die on a ventilator?”
I paused. This seemed to be a direct question that required a direct answer. “Yes, Josh. I believe you will.”
“OK, there is no way I’m going to die on a ventilator. Do not put me on one.”
A couple of days into his hospital stay, as we toyed with antibiotics and tried to optimize anything fixable that might affect his breathing, while discussing whether getting him even as far as an inpatient hospice unit was feasible, we got a call from the ICU team that the patient wanted to leave. At first it seemed ludicrous. I quizzed the unfortunate fellow leading our team. “Leave? He’s on 50 liters per minute. What do they mean ‘leave’? Did they make him mad or something?” We sped to his bedside.
One Last Great Weekend
The ensuing conversations were lengthy and many, involving patient and palliative care team, patient and ICU team, patient and family, patient and oncology team. The upshot was pretty simple. Josh’s big wish had been to go on a trip with his father. His dad had supported him a lot through his illness, and they had grown closer than before.
The initial plan was to visit Las Vegas. However, flying was now out of the question. Instead, they had planned a weekend trip to Nashville to stay at a fancy hotel and visit the honky-tonks. The trip was supposed to have taken place the week that Josh was hospitalized. After mulling it over, he had cooked up what he saw as a compromise. He would leave the hospital and drive to a casino town approximately 3 hours away for one last great weekend.
I began slowly to wrap my head around the fact that this patient was not afraid—at least not of the things I feared on his behalf.— Katherine E. Reeder-Hayes, MD, MBA, MSc
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He informed me that he had won $1,500 betting on basketball from his hospital bed to fund the trip. And a GoFundMe page was apparently doing well. This influx of cash, in his opinion, erased the major barrier to the feasibility of his weekend plans. As far as I could discern, there was no plan for Monday.
I have taken care of many patients near their end of life who decided to take gambles, wise and unwise, but I had never been faced with one who wanted to gamble in the literal sense. We discussed the many potential downsides to his plan. The amount of oxygen we could deliver through a portable tank was vastly less than his current need, meaning he would rapidly become hypoxic. He might die in the car. He might feel so bad by the time he arrived that he would not be able to enjoy it anyway. The resort was at a higher altitude, and I had little idea whether that change would worsen his oxygenation. He might collapse in a public place, alarming strangers and traumatizing his family members. He might die alone in a hotel room. I couldn’t guarantee that paramedics would honor a “do not resuscitate” form stapled to the shirt of a young, healthy-looking man. I couldn’t even guarantee that we had a stapler on the unit. Hospice does not, I am almost certain, serve casinos.
Coming to Terms
I called the psychologist who had worked with Josh regularly in the past, hoping for some backup from someone who had an established rapport with him. I resorted to some dramatically nonmedical language in my attempts to describe the patient’s state of mind. “He basically has a mental image that he wants to go over the cliff, like the last scene of Thelma and Louise. But this isn’t a movie. Patients with cancer don’t die by driving off a cliff. He’s going to scare some hotel manager out of his wits. He doesn’t even have a plan for what to do if he makes it back!” The kindly psychologist agreed to evaluate the patient, although it is possible he may have been evaluating the oncologist as well.
I began my conversations with Josh assuming either he had not thought of these things or he was in denial about the severity of his illness. Thinking back to our ventilator talk, however, I gradually realized he was not, generally speaking, that sort of patient. I began slowly to wrap my head around the fact that this patient was not afraid—at least not of the things I feared on his behalf.
It was not that he didn’t believe the scenarios I presented. To him, dying on the floor of a casino after a great night out was not the worst possible scenario. Dying in a cage in our ICU, the last days of his life orchestrated by others and mimicking the death of a man three times his age, waiting around in the least fun place on earth for his time to die: that was what scared him.
The things I would want for myself at the end of life—quiet and calmness, being surrounded by loved ones, help to ease my physical symptoms—were not things that would comfort him. I was not going to make him a middle-aged man in the course of 3 days in the ICU. And quite quickly, I began to like him for it. One has to admire the spirit of someone who can hold out against such a large team of experts telling him how he ought to die.
Slowly, with almost audible creaks from our collective old age, the team turned its focus to making the most of Josh’s plan. An oxygen tank and wheelchair were procured. Several copies of a large yellow form with a “do not resuscitate” order were signed. The palliative care team provided oral morphine for air hunger. The primary oncologist and nurse urged Josh and his family to contact them immediately if he made it home so they could mobilize hospice to keep him from returning to the hospital.
We all wished him good luck. As I pressed the button to leave the ICU on the last day of Josh’s stay, a thought occurred to me. I turned and walked back into the room. “Hey, Josh, there is one more thing I want to ask you.”
His face took on a good-humored but slightly exasperated look, the look of the teenage boy bracing himself to endure one more well-intended mom lecture. Doubtless he thought I’d come up with one more excellent reason why he should not carry out his plan. “Yeah?” he said.
Las Vegas, Nevada. Photo: Getty Images
“Well, I sometimes write stories about my patients. Usually I write about people I’ve taken care of who taught me something important or made me think about things in a different way. And I think that one day I might want to write about you. Would that be OK with you?”
He straightened up in the bed, pushing his hands under himself in the effort to be more upright. “Yeah, I’d like that. But just one thing: you have to use my real name. No pseudonyms.”
And so I am telling Josh’s story, the story of a patient who is young enough and reckless enough to tell us all exactly how he wanted to live the rest of his life, even when his plans did not fit into his medical team’s boxes. Josh made it to the casino. He sent our fellow a picture of himself surrounded by what seemed to be groupies. I’m told he won $1,100 and bought his father a ridiculously large television. He lived for 6 days, long enough to return home and die comfortably with hospice care. Somewhere I sense he’s laughing at me. To the end, his gambles paid off.
For our patients at the end of life, how often do we try to assign them a pseudonym, one that fits neatly into our medical boxes? And do we know how to listen when they ask us to acknowledge their real identities and to help them conclude their lives in the way that fits them, not in the way that would fit us? Perhaps we too can stand to take some risks.
I am grateful I got in one last gamble with Josh. That, believe me, is his real name.
Dr. Reeder-Hayes is Assistant Professor of Medicine at University of North Carolina–Lineberger Comprehensive Cancer Center, Chapel Hill, North Carolina.
DISCLOSURE: The author reported no conflicts of interest.