Patient and Family Interpretations of the Language of Cancer Care

Maurie Markman, MD

This commentary briefly examines the use of certain words and expressions in the oncology domain and the potentially relevant implications of different interpretations by patients and their families from professionals employing this language, including academic authors, experts in health policy and biomedical ethics, and members of their own clinical teams.

The intent of the words employed by a speaker or author may be clear to that individual, but this does not necessarily mean another individual at any given point in time will have the same interpretation of those words. Although the language of oncology care was certainly not the subject of the statement attributed to Supreme Court Justice Potter Stewart in Jacobellis v. Ohio, the famous 1964 obscenity case, he clearly articulates the relevance of personal and subjective interpretation in matters that may be of great importance to that individual:

“I shall not today attempt further to define the kinds of material I understand to be embraced within that shorthand description [“hard-core pornography”], and perhaps I could never succeed in intelligibly doing so. But I know it when I see it, and the motion picture involved in this case is not that.”¹ Some expressions employed by physicians caring for patients with cancer may appear to be quite innocent when examined by the casual observer (or reader of the oncology literature) but may result in a negative response from patients. My favorite example of this use of language in the oncology sphere was past (and hopefully not current) descriptions of second or later lines of chemotherapy for women with ovarian cancer as being “salvage chemotherapy.” I have heard more than one patient when informed she would be recommended a particular “salvage chemotherapy” as stating something to the effect that “I am not a ship and do not need be salvaged.” “Palliative” is another potentially problematic word in the oncology domain. Although the definition of the term “palliative” should not by itself be a concern (“mitigating; reducing the severity of; denoting a method of treatment of a disease or of its symptoms”²) and the goals clearly appropriate in the context of all forms of cancer management, for many patients when presented with the suggestion they be seen by a member of a “palliative care service” may refuse or be concerned this maneuver implies a decision by the oncology team to focus on end-of-life care.

Another example is the busy cancer surgeon whose explanation of the surgery and future course of action is to simply state: “I got all the cancer, but I am referring you to the medical oncologist who will discuss with you next steps.” Of course, if the surgeon “got all the cancer,” the patient may ask: “Why am I seeing the medical oncologist?”

Words or expressions may be associated with more complex differences between what might be considered a relatively simple straight-forward interpretation based on objective data and how the available information may be viewed and understood by an individual patient or family.

Take the world “cure,” for example, as may be employed in the context of cancer care. Of course, the term “cure” may be reasonably used to include the successful elimination of a bacterial infection or the complete resolution of mouth sores resulting from low nadir counts following cytotoxic chemotherapy.

But clearly the most frequent use of the term in this sphere is when patients and their families, possibly almost immediately upon being informed of the cancer diagnosis, inquire of the medical team as to whether the individual “can be” or even “will be cured.” Although the precise definition of “cure” may be legitimately debated, it is reasonable to conclude that in general the term implies there is no clinical evidence the cancer has recurred following whatever treatment is employed during the remainder of that individual’s lifetime.

There has been much discussion in the oncology literature over many years regarding the potential for patients with cancer to express what have been labeled “unrealistic expectations” for the outcomes they anticipate being able to experience based on their diagnoses and the status of their malignancy.^3,4 One frequently quoted article on the topic published in the New England Journal of Medicine surveyed more than 1100 patients with newly diagnosed metastatic cancers and noted that “69% of patients with lung cancer and 81% of those with colorectal cancer did not report understanding that chemotherapy was not at all likely to cure their cancer.”³ Based on this analysis the authors concluded that, “Many patients receiving chemotherapy for incurable cancers may not understand that chemotherapy is unlikely to be curative, which could compromise their ability to make informed treatment decisions that are consonant with their preferences.”³ They further noted that oncologists may be able to “improve patients’ understanding, but this may come at the cost of patients’ satisfaction with them.”³ It is almost certainly correct that a population of patients informed of a diagnosis of metastatic cancer will be unable or be unwilling to understand the implications of their situation and as a result have trouble making objectively rational life decisions. However, it must also be acknowledged that a response to a survey which inquires as to a patient’s goals or even expectations may reflect their fervent hope for a favorable outcome (regardless of the clearly stated odds against such a result) rather than problematic denial about their situation.

As poignantly expressed in a recently beautifully written commentary on the topic of hope in cancer care, the author notes “sometimes the best treatment includes a healthy dose of optimism, even when it is not warranted.”⁵ And one might further ask, what is wrong with this view of life when an individual is facing what is likely to be a fatal illness, which may include a decision to participate in a novel molecularly targeted phase 1 clinical trial, with the hope the cancer might be “cured?”

Finally, in the opinion of this commentator, there is nothing inherent in this decision by a patient with cancer to focus at a particular point in time on “cure” that indicates the individual will fail to alter this perspective as their situation changes.

In fact, a provocative recent report which examined the question of the accuracy of a patient’s “prognostic beliefs at baseline” provides support for this perspective. The authors surveyed a group of 600 patients with metastatic cancer on several occasions during their cancer journey and noted that although a minority of individuals expressed “accurate prognostic beliefs” when initially surveyed, with increasing symptomatic burden patients were more likely to state an objectively appropriate understanding of their likely outcome.⁴

Maurie Markman, MD, is president of Medicine & Science at City of Hope, Atlanta, Chicago, Phoenix.

References

1. 378 U.S. at 197 (Stewart, J, concurring)
2. Stedman’s Medical Dictionary. 23rd Edition. 1976. Williams & Wilkins Company, Baltimore
3. Weeks JC, Catalano PJ, Cronin A, et al. Patients’ expectations about effects of chemotherapy for advanced cancer. N Engl J Med. 2012; 367(17):1616-1625. doi:10.1056/NEJMoa1204410
4. Gupta I, Finkelstein EA, Ozdemir S, et al. Changes in prognostic beliefs of patients with metastatic cancer and their association with changing health status. J Natl Compr Canc Netw. 2023; 21(10):1021-1028.e8. doi:10.6004/jnccn.2023.7052
5. Tripp P. Never take hope from the patient. The American Scholar Winter 2022 pp. 77-87.