Hope Versus Expectation: A Critical Distinction

Maurie Markman, MD

The oncology, general medical, and lay literature contains considerable commentary from clinicians, researchers, and public policy academics regarding a variety of topics. Such commentary is often poignant, enlightening, and provocative. Further, regardless of the quality of the writing or content of the material, in our society, such expressions of opinion should never be discouraged.

However, when individual or group perspectives are publicly stated (eg, peer-reviewed published articles, blogs, etc) it should be anticipated that others may comment upon or openly challenge the content or the conclusions of the writer(s).

Here, my goal is to do just that: to vigorously disagree with an opinion expressed by an academic oncologist in an article published in a recent issue of a high-impact health policy journal.¹ In the article in question, the author highlights his experience with a particular patient who was under his care and who expressed a strong desire to receive aggressive treatment for her malignancy. The author notes the difficulty experienced during the patient’s cancer journey and follows this with a discussion of his belief that oncologists, on the whole, tend to excessively focus on being “rescuers.” He writes, “We see ourselves as heroic protagonists in the life-and-death battle against cancer.”¹

I find no fault in these specific words or conclusions, as they apparently reflect facts (eg, stated desire of a patient and subsequent clinical course) and the experience of the oncologist writer among his professional peers.

The issue that must be highlighted is the writer’s striking objection to the views of the late Dr Stephen Gould, an internationally renowned evolutionary biologist who, in his landmark essay “The Median Isn’t the Message,” described how statistics emboldened him in his battle with cancer.² In this truly masterful paper, Dr Gould, after receiving a diagnosis of peritoneal mesothelioma, a malignancy with a dismal median survival, chose to focus on the “rightskewed” distribution of the reported survival curve, rather than the median survival figure, as he faced both treatment and his overall pending cancer journey. What it showed him was that he had potentially years to live, rather than a median of 8 months, based on his relative health.

The oncology editorialist, in describing Dr Gould’s very carefully and truly magnificently crafted words, states, “If patients focus only on the tail of the survival curve and strive to become exceptional responders, then, by definition, the overwhelming majority will be unprepared for their fate. Thus viewed, ‘The Median Isn’t the Message’ is dangerous advice.”²

At this point, it is important to note the critical distinction between hope and expectation as verbally and emotionally expressed by patients with cancer. The significance of hope, or deep hope, for patients facing a terminal illness was highlighted by Jack Coulehan, MD, MPH, as a critical measure to help many patients deal more effectively with the potentially devastating impact of cancer on the individual and the family.

But how do such possibly very strong personal feelings of hope translate into patient-stated goals of cancer treatment? Academic researchers have reported rather striking differences in survey responses provided by patients with cancer regarding their own confidence about beating the odds compared with established population-based survival rates. For example, in a widely quoted paper, investigators noted that more than 70% of patients (n = 1193) with advanced lung or colorectal cancer stated that “chemotherapy might be curative” when the objectively established realistic opportunity for cure during this specific era was vanishingly small.⁴ In a second study examining patients (n = 384) receiving radiation therapy for stage IIIB or IV lung cancer, the investigators reported that “64% did not understand that radiation therapy was not at all likely to cure them.”⁵

These reports have appropriately highlighted the realistic potential that such highly unrealistic assumptions regarding outcome may unfortunately influence critical life decisions, including delay or avoidance of palliative/hospice care as well as inadequate personal assessment of the risk for serious treatment-related toxicity. Further, unique decisions in individual situations, such as purchasing an expensive home or starting a new business, may be harmful to the future of the patient’s family. Finally, putting off acceptance of mortality may compromise a patient’s ability to develop a timeline for important personal matters, such as taking a meaningful trip or spending time visiting family.

However, the essential question to be asked here is whether these responses to academically based survey questions represent not an expectation of unrealistic outcomes but rather solely personal hope, which will permit many individuals to more effectively deal with the emotional and physical impact of cancer on themselves and their families over the course of the disease.

What is most important to highlight here is that there is simply no inherent reason to conclude that hope, as just defined, equals expectation. In a recently published, rather focused, and in-depth analysis of patients with advanced cancer (n = 234), only 12% (vs >70% in other reports) stated that cure was their personal goal of therapy.⁶

Finally, it is critical to inquire what is wrong with hope, if it helps patients through their journey while not interfering with likely necessary end-of-life decisions when these are required to be made.

Therefore, when the oncologist editorialist declares that a focus on the tail of the curve “is dangerous,” even if this enables patients to more effectively deal with what must be considered among the most difficult of all possible life experiences, one must very strongly question, or simply refute, his conclusion and perhaps even his apparent authority as a provider to declare how individual patients should optimally deal with cancer.

References

1. Jacobson JO. Managing cancer patients’ expectations amid hope and hype. Health Aff (Millwood). 2019; 38(2):320-323. doi: 10.1377/hlthaff.2018.05259.
2. Gould SJ. The median isn’t the message. Discover. 1985;6:40-42.
3. Coulehan J. Deep hope: a song without words. Theor Med Bioeth. 2011;32(3):143-160. doi: 10.1007/s11017-011-9172-2.
4. 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.
5. Chen AB, Cronin A, Weeks JC, et al. Expectations about the effectiveness of radiation therapy among patients with incurable lung cancer. J Clin Oncol. 2013; 31(21):2730-2735. doi: 10.1200/JCO.2012.48.5748.
6. DeMartini J, Fenton JJ, Epstein R, et al. Patients’ hopes for advanced cancer treatment. J Pain Symptom Manage. 2019; 57(1)57-63. doi: 10.1016/j.jpainsymman.2018.09.014.