Prognostic Truths May Be in the Eye of the Beholder

Maurie Markman, MD

One can only applaud recent efforts by clinical cancer investigators to query both patients and their providers regarding a wide range of potentially highly relevant topics. Important aims of such efforts include the establishment of a better understanding of the goals of patients, their families, and their oncologists in a particular setting and the subsequent development of strategies to strengthen communication and shared decision making essential to optimize individual patient outcomes.

In the best survey research, great care is taken to word questions and potential responses in a manner that makes it possible to optimally and objectively examine what the respondents actually mean by a particular answer to a specific query.

The investigators then attempt to analyze the responses and subsequently draw general conclusions based on their findings. Depending on the goals and outcomes of a particular research project, the results may lead to future investigative efforts and the authors may also suggest implications of their project that should inform current clinical practice.

Study Finds Communication Gap

However, just as in any research endeavor where the investigators are required to provide a subjective interpretation of objective responses or results, there is frequently room to question those interpretations. Such challenges may be most relevant in settings where the research is conducted by academic physicians, particularly individuals in a different specialty from the patient/physician population being studied, or so-called “non-clinical experts” who do not directly or routinely care for patients, and where these individuals are attempting to interpret the reasons for certain actions of clinically active community-based practitioners.Consider, for example, the results of a most interesting analysis conducted as a component of a larger survey of patients and oncologists which examined communication between the 2 groups.¹

The particular issue addressed in this paper highlighted how oncologists communicate their personal “belief” regarding a patient’s prognosis with that individual.

Based on the survey responses, the investigators concluded that oncologists very frequently fail to inform patients of their own opinion regarding prognosis, which is often—and unsurprisingly— considerably less optimistic than the patient’s own belief.

The investigators use these data to provide a rather striking, and one might even suggest somewhat condemnatory, conclusion that “patient-oncologist discordance about survival prognosis was common and patients rarely knew that their opinions differed from those of their oncologists.”¹

One cannot rationally disagree with the investigators’ conclusion that inadequacy of communication between patients and their physicians regarding critically important management and prognosis-related issues must be addressed both in individual practices and in the community of oncologists as a whole.

A Deeper Look at the Data

However, it is reasonable and appropriate to suggest a meaningfully different alternative hypothesis for what has been observed in the survey results that may explain a limited or perhaps even a substantial part of the reported outcomes.It is instructive in this discussion to remember the highly personal goal-setting decision by the late eminent evolutionary biologist Stephen J. Gould when he was diagnosed with peritoneal mesothelioma and which he subsequently described in a magnificent and now truly landmark essay, The Median Isn’t the Message.²

Dr Gould noted the highly disturbing and welldocumented median survival of far less than 1 year for this malignant condition. However, rather than focusing on the “imaginary patient” who is somehow prospectively known to subsequently experience median survival, Dr Gould elected to objectively examine the facts but then to see himself as being one of those patients whose clinical course would ultimately be described as being at the favorable tail of that overall highly distressing survival curve.

And what was wrong with this decision and conclusion? He ended up outliving his cancer for nearly 20 years.

Similarly, it is reasonable to hypothesize that oncologists may be completely aware of the statistically defined median and overall survival rates in a well-documented population-based survival curve in a particular clinical setting relevant to a given patient.

However, the physician may also quite rationally see no specific reason to believe that the clinical course of the patient sitting in front of her or him in consultation with a new cancer diagnosis or having experienced recurrence or persistence of the disease process following prior therapy cannot ultimately be found to be on the favorable end of that documented survival continuum. Again, it is relevant to ask, what is wrong with this thought process and approach to disease management?

Of course, this general statement absolutely does not mean that oncologists should ever fail to be completely open and honest with their patients regarding their disease process, its treatment, or responses to questions related to available prognostic data.

However, to assume that the survival outcome for an individual patient is somehow easily and objectively defined by median survival statistics or by a particular point on a population-based survival curve—and that such information should simply be reported to a patient as if it were a predetermined fact—is far more than highly questionable.

It is critical to appreciate that detailed knowledge and understanding of population-based survival statistics is very different from such knowledge of the future clinical course of an individual patient with cancer.

And one would suspect that Dr Gould, the eminent objective scientist that he was, would certainly have agreed with this conclusion.

Maurie Markman, MD, editor-in-chief, is president of Medicine & Science at Cancer Treatment Centers of America, and clinical professor of Medicine, Drexel University College of Medicine. maurie.markman@ctca-hope.com.

References

1. Gramling R, Fiscella K, Xing G, et al. Determinants of patient-oncologist prognostic discordance in advanced cancer [published online July 14, 2016]. JAMA Oncol. doi:10.1001/jamaoncol.2016.1861.
2. Gould SJ. The Median Isn’t The Message. Discover 1985; June:40-42.