The ASCO Post is pleased to reproduce installments of the “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 jco.org and search “Art of Oncology.”
“The price of anything is the amount of life you exchange for it.” —Henry David Thoreau
I knocked, grabbed the review of systems and billing sheet posted outside the clinic’s examination room door, entered, shook hands, and invited him on the examination table in one movement. Not because I was late, but out of respect for his disdain for waiting. I rattled off scan and laboratory results while doing a physical examination. No, he did not have diarrhea, nausea, fatigue, or pain. Yes, he was eating and sleeping well and still working. Chief complaint, as he had written, was confirmed in our conversation: his wait time.
As I enter the next clinic examination room, I resolve to pay at least as much attention to the time treatment will take as I do to the time it may give.— Karen Daily, DO
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I nodded, slowed my pace, sat down, and listened (again). His frustrations had long become the frustrations of the infusion room charge nurse, clinic manager, scheduling staff, laboratory, and oncology pharmacist. My impatient patient.
“Why do I come at 8:00 and labs are not drawn until 8:30? Some days it takes 45 minutes instead of 30 to get results. If the nurse does not order in time, I miss one of only three shipments per day” (for 48-hour continuous infusion of fluorouracil). He continued to rattle on details of the process of the outpatient infusion room’s inner workings. My response was the same I had given on so many prior visits. I tried to understand his perspective, think of ways to reduce inefficiencies, and acknowledge his time is valuable. I suggested that because a wait might occur at times, despite our best efforts, he anticipate this and bring a pleasant or productive distraction. We explored more creative solutions: capecitabine, laboratory studies the day before treatment, home infusion, further reducing clinic visits from every 4 to every 6 weeks.
His demands struck the staff as unreasonable and unattainable. On more than one occasion, I heard colleagues share tales of patients who were finding the inevitable loss of control that accompanies a cancer diagnosis very hard to bear. I too had observed the same in my own patients. It would be easy to discard this patient’s verbal litany of offenses as just that and dismiss or label it as poor coping.
As I listened to his perspective, beneath the abrasive exterior, I was able to connect with him, and his frustrations became mine. I thought of the myriad other patients who are less vocal and more tolerant of oncology’s inefficiencies and reflected on how little time we spend addressing this particular toxicity: the toxicity of time.
Investment of Time
Much has been said about the cost of cancer treatment and its relative value. Perhaps transparent pricing could allow patients and physicians to better assess the financial investment and make informed choices. But what if we also addressed the investment of time, arguably our most precious commodity, in choosing a treatment that best suits each patient, especially when the goal of treatment is palliative?
We could figure, on an average day, how much time is spent in travel to and from the treatment center; on laboratory blood sampling, vital signs, clinic visit, and premedication; infusion time; and add the inevitable wait time at nearly each step along the way. On any given day, the port needs heparin flush, the infusion orders are not signed, the electronic medical records system is down, or the physician is running behind. Much of our patients’ time investments remain invisible to clinicians, from picking up prescriptions to time spent undergoing scheduled imaging studies, to the many telephone calls and paperwork necessary to ensure insurance coverage, obtain assistance to pay for treatment, or submit the documentation needed to extend disability benefits. Add to this list the unpredictable or unplanned hours and days consumed by emergency department and hospital visits for treatment-related complications.
Would an honest appraisal of the time required for treatment tip the scales at times of clinical equipoise? Second-line therapy for a patient with metastatic disease and a performance status of 2? Adjuvant therapy for a single-digit improvement in odds of recurrence?
Adversary Becomes Ally
Gradually, my patient adversary becomes my ally. He serves as an unlikely source of inspiration in the familiar fight against time for patients with cancer. Abandoning the glamorous conventional weaponry of novel targeted agents and immunotherapy, he shifts my focus to the small and mundane tasks of everyday practice.
These gains in time do not come with a control arm, dazzling Kaplan-Meier curve, or U.S. Food and Drug Administration application to follow. As with most of contemporary oncology’s advances, progress is incremental and defined by small gains. Outpatient infusion room orders signed ahead of the day of scheduled treatment. A telephone call that spares an out-of-town patient from a return clinic visit. Reduced appointment schedules for patients on regimens without cumulative neuropathy concerns. Cancelled standing laboratory orders after neoadjuvant treatment of patients entering surveillance. Prolific use of the e-mail feature of the electronic medical record. Adjuvant endocrine prescriptions in 90-day increments with refills to mail-order pharmacies. Triage protocols to allow fellows to select patients who can safely be managed with a morning clinic visit and avoid a night spent in the emergency department.
As I enter the next clinic examination room, I resolve to pay at least as much attention to the time treatment will take as I do to the time it may give. ■
At the time this article was published in the Journal of Clinical Oncology, Dr. Daily was Assistant Professor of Medicine at the University of Florida, Gainesville.