Ostensibly, the illness is the culprit. But it is also the cancer patient who is made culpable
Editor-in-Chief of OncologyLive
Senior vice president for Clinical Affairs and National Director for Medical Oncology Cancer Treatment Centers of America, Eastern Regional Medical Center
“You have cancer.” In the entire realm of clinical medicine, one would be challenged to find three more devastating words—particularly that one specific six-letter word—or to identify a more difficult discussion for a physician to have with a patient. In Illness as Metaphor, a classic essay still relevant today, Susan Sontag describes the impact of the word cancer1: “Putative notions of disease have a long history, and such notions are particularly active with cancer. There is the ‘fight’ or ‘crusade’ against cancer; cancer is the ‘killer’ disease; people who have cancer are ‘cancer victims.’ Ostensibly, the illness is the culprit. But it is also the cancer patient who is made culpable. Widely believed psychological theories of disease assign to the luckless ill the ultimate responsibility both for falling ill and for getting well. And conventions of treating cancer as no mere disease but a demonic enemy make cancer not just a lethal disease but a shameful one.”
The term is so freighted with emotion that a somewhat controversial suggestion recently was made to no longer label premalignant conditions such as ductal carcinoma in situ (DCIS) or high-grade prostatic intraepithelial neoplasia as “cancer,” at least in part because of the implications that this terrible word has for the patient being provided with this diagnosis.2 Indeed, researchers found that the terms used to describe the treatment choices for DCIS had a statistically significant impact on whether women without breast cancer who participated in a survey would choose surgery, medication, or surveillance if diagnosed with DCIS (Figure).3
Yet there are other terms that clinicians, in general, and those caring for patients with cancer, in particular, employ which have the potential to have a similar, although almost certainly unanticipated and surely unwanted impact, on the emotional well-being of patients. In an era in which patients with cancer and their families have access to so much information about their treatment options, it is time to put to rest terms that could cause confusion or promote fear. In particular, six such words should be excised from discussions with patients (Table).
Consider the word advanced, as in “advanced cancer.” The American Society of Clinical Oncology (ASCO) has elected to employ this term in its laudable effort to encourage open and honest discussions/communication between patients with cancer and their clinical teams when faced with progressive/refractory malignant disease. Such discussions would include the limited statistical likelihood that continued therapy would be able to achieve an objective response or (far more important) improvement in quality of life or prolongation of survival; the rational need based on individual family circumstances (eg, responsibility for the care of young children) to consider end-of-life issues; and a personal decision to discontinue antineoplastic therapy as one transitions to a specific focus on comfort/symptomatic measures.
Yet, the term advanced has long been used in oncology to describe the extent of the disease process at presentation (ie, stage) in patients with malignant disease. Thus, while a woman with newly diagnosed stage IV ovarian cancer would clearly have “advanced disease,” it would surely be inappropriate to inform a patient in this setting of the need to focus on end-of-life and comfort care matters when the anticipated major objective response rate to platinum-based chemotherapy would exceed 60%, the median survival in this setting would likely exceed 18 months, and five-year or greater survival is not an unreasonable hope for patients whose tumors are highly responsive to the initial chemotherapy. Similarly, although a newly diagnosed patient with advanced stage kidney cancer 15 years ago or a patient with advanced stage malignant melanoma five years ago could reasonably be considered “advanced” by the apparent ASCO definition of the term, one could make a very strong argument that such a distinction would be highly questionable today.
From the perspective of many patients, three terms that likely are even more problematic than the word advanced when employed in the context of oncologic care are terminal or incurable (as in “the cancer is terminal or incurable”) and futile (as in “continued anticancer therapy is futile”).
As defined in Webster’s New Collegiate Dictionary and in the context of the current discussion, the word terminal can be taken to mean “occurring at or contributing to the end of life” while the term incurable would simply be defined as “not curable.” But what does either of these expressions mean to a particular patient?
Is a “terminal cancer” one where a patient can be expected to live only a few months, weeks, or even days, or was the use of this term by members of the care team merely meant to convey the message that there is no evidence that any current antineoplastic management strategy can favorably influence the natural history of the malignancy in a patient whose cancer is progressive (eg, documented by imaging studies, worsening symptoms, increased fatigue)?
An individual patient and his/her family may experience quite difficult feelings about the short-term future if told a cancer is terminal, based on how they interpret the meaning of this powerful word, regardless of whether it is expressed verbally or in a written document, such as a medical record or a publication describing the clinical course of a particular malignant condition.
And, perhaps even more problematic in this context, is the word incurable, which might imply “weeks to live” even though it may have been used only to suggest that at some point—perhaps many years from today—the cancer will progress and cause a patient’s death (assuming death does not result from an unrelated cause). A patient hearing that his/her cancer is incurable may only understand, and subsequently believe, the first meaning of short-term survival when the scientifically valid interpretation would be that far longer survival with currently available treatment is a realistic possibility, although it is anticipated based on our existing knowledge that the cancer will ultimately recur/progress and lead to death.
Finally, we turn to perhaps the most problematic term of all in the context of oncologic management: futile. Again, Webster’s New Collegiate Dictionary defines the word to mean “serving no useful purpose or completely ineffective.” Who exactly should be permitted to decide that a given strategy is or will be “serving no useful purpose”? Is it the academic who writes the textbooks or articles published in eminent peer-reviewed journals, the health policy bureaucrat who decides on payment for medical services, or the committees of “experts” who write guidelines suggesting they are in a position to know what patients actually feel is “a useful purpose”?
DCIS indicates ductal carcinoma in situ. Omer ZB et al. JAMA Intern Med. 2013;173(19):1769.
Perhaps it should be individual patients themselves who are permitted to make such decisions. In the opinion of this commentator, the term futile should be banned from conversations and writings in the oncology domain, except to refer to unique conditions where futility has a very specific and objectively valid meaning, such as the futility of continuing resuscitation efforts in the documented prolonged absence of cardiac electrical activity.
It is not only terms describing end-of-life issues that require examination. An example of a questionable word that commonly appears in the oncology literature, and in descriptions of the goals of cancer management, is that of a chemotherapy regimen being called a salvage strategy. This commentator has heard of more than one patient who, when informed that she was being offered such a program, declared: “What am I, a piece of equipment or a ship? I do not need to be salvaged.” Yet, that term is often used, as it was in an abstract of a manuscript recently published in a high-impact medical journal.4 Describing the use of high-dose chemotherapy employed during a later part of the natural history of a particular cancer, the investigators called the regimen “salvage transplantation.” Is this really an appropriate term to describe management of a life-threatening condition to patients and their families?
Why not simply describe the approach as “secondline” or “secondary” chemotherapy, or some other completely neutral term that avoids the serious risk of unintended but realistically negative connotations?
Similarly, a straightforward approach should be used when selecting words to depict a complex procedure to a patient or family so that the intent of the undertaking is very clear. Thus, for example, the now commonly employed expression cytoreduction (ie, “It is our plan to attempt to cytoreduce the cancer present within the peritoneal cavity prior to the administration of cytotoxic chemotherapy”) would be more easily understood/ conceptualized by a nonmedical audience than the previously frequently used term, debulked (ie, “It is our plan to debulk the cancer present within the peritoneal cavity prior to the . . . ”).
We must understand the profound relevance of the meaning of particular words in the context of cancer and its management. In the past, the use of medical terminology and discussions were essentially the exclusive domain of the medical/clinical team. However, today, patients and their families are increasingly and highly appropriately involved in all levels of conversation regarding management decisions. As a result, it is absolutely critical that those of us in the medical establishment select words and terms to describe our thoughts and actions in the clearest possible manner.
Wherever individual words have truly emotionally loaded and rather profoundly personal interpretations, their use in the oncology sphere should be severely restricted to very specific settings, if they are used at all.