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© 2002 American Society for Clinical Oncology
Sweet Time UnafflictedByFrom the Division of Medical Oncology, Dalhousie University, Queen Elizabeth II Health Sciences Center, Halifax, Nova Scotia, Canada. Address reprint requests to Daniel Rayson, MD, Division of Medical Oncology, Dalhousie University, Queen Elizabeth II Health Sciences Center, 1278 Tower Rd, Halifax, Nova Scotia, Canada B3H 2Y9; email: daniel.rayson{at}cdha.nshealth.ca THERE WAS NOTHING particularly stressful or shattering about the day. Reviewing the names of the transiently unwell, tenuously stable, and tragically worsening patients who had made their way through my clinic without significant delay or complication, I breathed easily. Patients and families were coping with diagnoses, diseases, and drugs as well as could be expected. The telephone messages after clinic were limited to two prescription refills. There were no hastily arranged meetings to discuss the latest crises in drug funding, research, or program development. I didn’t have to devise any excuses for my absence, could just leave on time, feeling as if I held down a regular job for the first time in a while. The traffic along the harbor-front road was heavy as usual, allowing for needed peaceful time to stare blankly at the water and the graceful suspension bridges spanning the basin. Our dog was waiting for me as I pulled into the driveway, her exuberant claws leaving another set of linear gashes in the car paint. Our children, aged 5 and 2, tumbled out of the front door, bare feet slapping on the walkway, swarming me with hugs and kisses. Supper, playtime, bath-night, and teeth-brush went raucously well and, as night fell, the kids were prepped for bed. It was my wife’s turn to tickle and tease them to sleep, leaving me on my own for a while. I felt the lump suddenly arise on my chest wall. Firm, mildly tender, immobile, slightly erythematous, two centimeters. Similar ones were also in my supraclavicular fossae bilaterally. I knew what they were, had felt other such lumps, on others. As the realization became increasingly clear, I began to hear words said countless times before, to others. "Chemotherapy, options, goals, radiation, palliative, immunotherapy, pain control, morphine . . . ." A single consuming thought crowded out the medical fragments: "The swing set. I need to finish the swing set." The slide was buried under the usual excuses. "I’ve got to finish it now. May be the last thing I finish . . . my legacy, guaranteed for seven years of continuous use." The father they barely knew built it with his own two hands. They saw me do it, experimenting with my tools and losing screws alongside me. Have got to see them go headfirst down that slide . . . . "My father built it . . . . He died when I was five." I woke up in an agitated state of hyperawareness, hands reaching frantically to my neck and chest. There was nothing. No mass, no pain. A sudden wave of nausea overtook me as I climbed weakly off the couch. Staggering around the room, it took a few minutes for the palpitations to settle, for my legs to feel strong again. My wife asked me what was wrong. I seemed to have been sleeping so peacefully. It was peaceful. Not what I imagined falling off a cliff, becoming septic, having a heart attack, or being intubated would feel like. I just found it; no pain, no commotion. The panic set in as violently as any other nightmare once the implications of the lumps became clear and the discussion regarding prognosis and therapy had begun. Results of a survey asking cancer patients and health care professionals, including oncologists and oncology nurses, what percentage benefit they would need to accept chemotherapy as a treatment for cancer were published in 1990.1 Cancer patients about to receive treatment needed a 1% chance of cure to make "intensive" chemotherapy acceptable compared with the 10% and 50% cure rate demanded by oncologists and oncology nurses, respectively. For symptom relief, patients were willing to accept the potential toxicities of chemotherapy for a 10% chance of improvement compared with the 50% we demanded to make chemotherapy "worthwhile." Why the difference in answers? If we are offering truly beneficial therapy in all cases, shouldn’t our perceptions be aligned with those of our patients? Part of the answer may lie in the fact that we have all seen far too many patients treated "for too long, for too little benefit, and without them knowing about it."2 Determined not to be one of them, we may demand greater evidence of benefit in exchange for the toxicities we have witnessed our patients suffer. Another factor may be that cancer patients make decisions in the midst of overriding fear and may be willing to go through anything in the hope of delaying or preventing advancing disease, uncertainty, chaos, and death. Unaffected medical oncologists know no fear. This discrepancy haunts every discussion of noncurative chemotherapy and underpins important issues of trust within the oncologic doctor–patient relationship. Patients are willing to accept less benefit and more toxicity because they may be terrified of not doing so, may feel that no reasonable alternatives exist, or may over- or underestimate the magnitude of benefit and harm of systemic therapy. The fact that it is much easier to write the chemo orders than to engage in the difficult and draining discussion entailed in not writing the chemo orders further exacerbates the tendency for more patients to undergo therapy that we would not necessarily want for ourselves or our loved ones. The trust placed in us when patients ask what we would do if we were in their shoes is merited only if we take the time to ensure a free and informed decision is made regarding choice of therapies. Freedom is not just another word for nothing left to lose, and an informed patient is not equivalent to a signature at the bottom of a consent form. A decision free of unreasonable guilt and terror at the thought of "giving up" can exist only if coupled with a realistic discussion of chances of treatment harm and symptom-controlling alternatives, even if there are no good ones. The study that hasn’t been done is to repeat the same survey questions with oncology professionals once they develop cancer. I strongly suspect that our requests for benefit would closely approach those of our patients once we became one of them. I know that in my dream, I would have accepted anything for the chance to finish installing the slide on the swing set. Would my oncologist know or care that my treatment decisions depended on something so seemingly trivial and unrelated? In his poem "ABC," U.S. Poet Laureate Robert Pinsky seems to describe the prediagnosed as living in "sweet time unafflicted."3 One lives in this sweet time until one is no longer in it by dint of personal or family tragedy, traversing the divide in seconds. Living in this sweet time is an entirely different state of being compared to living in "afflicted" time. There is no turning back once the line is crossed, and the casual invincibility of living unafflicted is shattered irrevocably. Most oncologists and their patients live in intersecting but parallel worlds. The unafflicted discuss treatment options. The afflicted catch and cling to treatment lifelines. We wish them clarity, peace, comfort, and closure. They battle confusion, desperation, pain, and chaos. For some, searching constantly for evermore aggressive, minimally beneficial therapy, there may not be any reasonable alternative. The emotional and psychological toxicities of not being treated may outweigh any conceivable physical morbidity. For most, however, the core discussion of palliative chemotherapy involves a dynamic equilibrium between disease- and patient-specific realities. Much good advice has been shared in these pages about approaches to managing this equilibrium.4-6 An acronym that may help serve as a framework for thinking through this issue, one I have shared with students rotating through my clinics, is AFRAID. It embodies what I believe is a core difference in perspective between oncologist and patient.
Never having developed the medical student syndrome of personalizing studied symptoms and diagnoses, I am not one to medicalize or self-diagnose. I have never demanded a computed tomography scan for a headache or an ECG for a muscle strain. My lack of prior medical panics may have made this an especially vivid experience. Let me finish the damn slide, then give me all you’ve got to let me spend as much time as I can watching my kids fight each other over who goes down the slide first. That was my decision. It may not be my sister’s. The unafflicted and afflicted can only hope that goals and intents are shared and intersect maximally. The only way to know is to ask. REFERENCES
1. Slevin ML, Stubbs L, Plant HJ, et al: Attitudes to chemotherapy: Comparing views of patients with cancer with those of doctors, nurses, and general public. BMJ 300: 1458-1460, 1990 2. Loprinzi C: Editor’s note. J Clin Oncol 18: 3445, 2000 3. Pinsky R: ABC, in Jersey Rain. New York, NY, Farrar, Strauss and Giroux, 2000, p 10
4. Smith TJ: Tell it like it is. J Clin Oncol 18: 3441-3445, 2000
5. Harnett PR, Moynihan TJ: "But doctor, what have I got to lose . . . ?" J Clin Oncol 19: 3294-3296, 2001
6. Neff P, Lyckholm L, Smith T: Truth or consequences: What to do when the patient doesn’t want to know. J Clin Oncol 20: 3035-3037, 2002
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Copyright © 2002 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
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