In a national population- and health-system-based cohort of patients with recently diagnosed metastatic cancer, we found that 69% of patients with lung cancer and 81% of those with colorectal cancer who were alive 4 months after diagnosis and who had opted to receive chemotherapy provided survey responses indicating inaccurate expectations about the curative potential of chemotherapy. After accounting for the effect of other factors, including education and income, nonwhite patients remained at particularly high risk for an inaccurate response. Paradoxically, patients who reported higher scores for physician communication were also at higher risk for inaccurate expectations, whereas patients with colorectal cancer receiving their care in integrated networks appeared to be at somewhat lower risk.
The rate of inaccurate responses that we observed was substantially higher than rates reported in previous smaller studies, most of which showed that only a minority of patients believed that palliative treatment would be curative.10,11,13,15-17
However, those studies surveyed patients in tertiary care cancer centers, and most asked patients whether they believed the goal of therapy to be cure or palliation. In contrast, we surveyed a large cohort representative of patients with cancer throughout the United States and asked how likely they thought it was that chemotherapy would cure them, with probabilistic rather than dichotomous response options. Therefore, our results are likely to be more generalizable.
Should we be concerned that the majority of patients with these diseases provide responses suggesting that they do not understand that there is essentially no chance that the chemotherapy they are receiving will cure them? Chemotherapy may offer palliation and some prolongation of life, so it represents a reasonable treatment choice for some patients. However, an argument can be made that patients without a sustained understanding that chemotherapy cannot cure their cancer have not met the standard for true ongoing informed consent to their treatment.28
Furthermore, previous studies have shown that patients with advanced cancer would accept toxic treatment for even a 1% chance of cure but would be unwilling to accept the same treatment for a substantial increase in life expectancy without cure.29,30
This finding suggests that patients who do not know whether a treatment offers any possibility of cure may be compromised in their ability to make informed treatment decisions that are consonant with their preferences.29,30
Finally, and perhaps most worrisome, this misunderstanding could represent an obstacle to optimal end-of-life planning and care.
The scale of CanCORS precluded detailed patient-specific physician surveys or audiotaping of clinical encounters. Therefore, we cannot comment on what physicians told patients about the expected outcomes of chemotherapy or directly examine the roles of patients and physicians in the genesis of patients’ expectations about the likelihood of cure. Nor can we assess how many patients understood the true likelihood of cure but responded to the question in a fashion that belied their level of understanding. The fact that 20 to 30% of respondents recognized that chemotherapy was not at all likely to cure them shows that at least some patients were able to accept this reality and to acknowledge it to an interviewer. The strikingly higher rate of inaccurate responses among nonwhite patients in our cohort, a difference not explained by education or income, strongly suggests that cultural factors influence patients’ beliefs, the nature of physician–patient communication about prognosis and care, or both.
Our results also provide evidence that physicians have some ability to influence patients’ understanding. The observed association between inaccurate beliefs about the likelihood of cure and higher ratings of physician communication suggests a link between physicians’ communication behaviors and patients’ understanding of treatment benefits. This suggests that patients perceive physicians as better communicators when they convey a more optimistic view of chemotherapy. Similarly, the finding that patients, especially those with colorectal cancer, who were treated in integrated networks were somewhat more likely to understand that chemotherapy is not curative suggests that providers may be able to improve patients’ understanding if they feel it is part of their professional role.
Multiple studies have documented that oncologists usually tell patients when their disease is not curable.12,31
However, it is clear from the results of our study and other studies that disclosure alone may not lead to sustained understanding among patients. Factors that have been previously shown to contribute to patients’ lack of acceptance of medical facts include lack of trust in physicians, alternative belief systems, and use of ambiguous language by physicians.31,32
One particularly relevant cancer-specific ethnographic study showed that “collusion” between patients with cancer and their physicians played a primary role, with a quick transition by both physician and patient from discussion of prognosis to discussion of treatment options and schedule, refocusing attention and leading to false optimism.31
In other words, a focus on chemotherapy was the instrument that facilitated prognostic misunderstanding. This phenomenon may help explain our finding that patients with colorectal cancer, a more chemotherapy-responsive disease than lung cancer, were more likely to report that chemotherapy could be curative.
An extensive body of literature is designed to help physicians learn to effectively and compassionately engage patients with terminal illness in discussions of end-of-life care.33-35
Much less has been written about how to help patients recognize that treatment is not curative,36-38
and most patient-oriented public websites do not include clear information about this issue. Our results suggest that greater attention to this area is needed.
Our study has several strengths, including the large sample size, the population-based ascertainment of patients, the scope of the clinical and sociodemographic data collected, and the use of a probabilistic rather than dichotomous outcome variable. It also has several weaknesses. Because our survey was conducted several months after diagnosis and excluded surrogates of deceased patients, we cannot comment on the beliefs of patients who received chemotherapy but died soon after diagnosis. Furthermore, we conducted a single survey several months after diagnosis and therefore cannot comment on whether and how responses might change over time. To our surprise, patients who were surveyed after the end of first-line chemotherapy were no less likely to report that chemotherapy could be curative, suggesting the tenacity of this inaccurate projection even in the face of experience. Despite our efforts to minimize social-desirability bias by the use of well-trained interviewers adhering to a standard script, telephone (rather than in-person) survey administration, and reassurance to patients that their responses would not be shared with their providers,39
it is possible that patients responded with greater optimism than they actually felt and that a clinically skilled and empathic interviewer who probed more deeply into these issues could have elicited follow-up responses that showed greater awareness. Finally, although our data suggest that both patients and physicians contribute to the genesis of this misunderstanding, the CanCORS study was not designed to collect the data needed to characterize the complex psychological and communication processes that led to the responses we obtained.
In an era of greater measurement and accountability in health care, we need to recognize that oncologists who communicate honestly with their patients, a marker of a high quality of care, may be at risk for lower patient ratings. Our results suggest the need for targeted education to help all physicians learn to communicate honestly while also maintaining patients’ trust and regard. Efforts to incorporate earlier and more effective end-of-life care must address honestly and unambiguously patients’ unrealistic expectations about the outcomes of chemotherapy.