Efforts to incorporate earlier and more effective end-of-life care must address honestly and unambiguously patients’ unrealistic expectations about the outcomes of chemotherapy.
Chemotherapy for metastatic lung or colorectal cancer can provide palliation and modestly prolong life, but is not curative. In a study recently reported in The New England Journal of Medicine, Jane C. Weeks, MD, of Dana-Farber Cancer Insitute, and colleagues found that the majority of patients with such disease did not report understanding that that their chemotherapy was highly unlikely to cure them.1 Inaccurate belief about chemotherapy in this setting was more likely among nonwhite patients and among patients with favorable ratings of physician communication.
The study involved 1,193 patients participating in the Cancer Care Outcomes Research and Surveillance (CanCORS) study who were alive 4 months after diagnosis and who had received chemotherapy for newly diagnosed metastatic lung (n = 710) or colorectal (n = 483) cancer. Professional interviewers surveyed patients (or surrogates if patients were too ill to be interviewed or had died) 4 to 7 months after diagnosis regarding personal characteristics, decision-making, experience of care, and outcomes.
Patients were asked, “After talking with your doctors about chemotherapy, how likely did you think it was that chemotherapy would cure your cancer.” Response options were “very likely,” “somewhat likely,” “a little likely,” “not at all likely,” and “don’t know.” Patients were also asked the same question with “help you live longer” (life extension) and “help you with problems you were having because of your cancer” (symptom relief) substituted for “cure your cancer.” Patients who reported not discussing chemotherapy with a physician or whose physician told them not to have chemotherapy were not asked these questions, and the questions were not included in surveys administered to surrogates of deceased patients.
For each of the measures of cure, life extension, and symptom relief, patients with colorectal cancer thought that chemotherapy was more likely to be effective than did those with lung cancer (P < .01 for all comparisons). Both groups of patients thought that chemotherapy was more likely to extend life than to achieve cure (P < .01 for both).
Overall, 69% of patients with lung cancer and 81% of patients with colorectal cancer did not respond that chemotherapy was “not at all likely” to achieve cure. Multivariate analysis showed that patients with colorectal cancer were almost twice as likely to have an inaccurate expectation compared with patients with lung cancer (odds ratio [OR] = 1.75, P < .001). Inaccurate expectation was more likely among patients of nonwhite race or ethnic group compared with white patients, including approximately three times more likely among Hispanic patients (OR = 2.82, 95% confidence interval [CI] = 1.51–5.27) and black patients (OR = 2.93, 95% CI = 1.80–4.78) and four times more likely among Asian/Pacific Islander patients (OR = 4.32, 95% CI = 2.19–8.49; P < .001 for overall comparison).
Factors associated with inaccurate expectations of cure included receipt of care outside of an integrated health-care network and reporting of poorer physician communication.
Physician communication was scored as 0 to 100 (poorer to better) by transforming the sum of five items derived from the Consumer Assessment of Healthcare Providers and Systems—ie, “How often did your doctors (1) listen carefully to you, (2) explain things in a way you could understand, (3) give you as much information as you wanted about your cancer treatments (including potential benefits and side effects), (4) encourage you to ask all the cancer-related questions you had, and (5) treat you with courtesy and respect?”
Compared with patients rating physician communication as 80 to 99, those rating it as 0 to 79 were 37% (OR = 1.37, 95% CI = 0.93–2.02) more likely to believe that chemotherapy could be curative. Compared with those giving physician communication a rating of 100, those rating it < 80 were nearly twice as likely to believe chemotherapy might cure their cancer (OR = 1.90, 95% CI = 1.33–2.72; P = .002 for overall comparison).
None of the other factors assessed in the multivariate analysis, including education level, functional status, and patient’s role in decision-making, were significantly associated with misunderstanding of the curative potential of chemotherapy. Patients in age brackets older than 21 to 54 years were more likely to have inaccurate expectations, but the overall trend was not significant (P = .06).
In a sensitivity analysis, the effect of care in an integrated health-care network in reducing likelihood of inaccurate expectation of cure was stronger in patients with colorectal cancer than in those with lung cancer (OR = 0.51, P = .02). In an analysis restricted to patients with data on treatment duration, there was no significant interaction between completing the survey after finishing chemotherapy and expectation of cure.
An analysis in which “don’t know” and “refused to answer” were categorized along with “not at all likely” as correct answers to the question about cure showed very similar results, except that the reduced likelihood of misunderstanding associated with receipt of care in an integrated health-care network was no longer significant (OR = 0.80, P = .17). In a model in which only “very likely” was considered an inaccurate response to the cure question, results were similar to those in the primary model except for a strong inverse correlation between education level and likelihood of inaccurate expectation.
Patients with a high school education or some college were 31% less likely to have inaccurate expectation compared with patients with less than high school education (OR = 0.69, 95% CI = 0.48–0.98) and those with a college degree were 51% less likely compared with those with a less than high school education (OR = 0.49, 95% CI = 0.32–0.77; P = .009 for overall comparison).
Do Patients Know but Not Say?
As noted by the investigators, the study does not provide information on what physicians told patients about chemotherapy or examine the roles of physicians and patients in forming expectations about treatment. It also cannot show whether patients may have understood the true likelihood of cure but responded to or decided to respond to the question in a manner that did not reflect that understanding. In this regard, the authors stated, “The strikingly high 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.”
The finding that patients reporting better physician communication also were more likely to have inaccurate expectations “suggests that patients perceive physicians as better communicators when they convey a more optimistic view of chemotherapy.” Similarly, the finding that treatment within integrated networks was associated with a modest increase in recognition 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.”
The authors concluded, “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.” ■
Click here for a related recently published study on patient expectations in clinical trials.
Disclosure:Among the authors of the NEJM study, Drs. Jane Weeks, Paul Catalano, Matthew Finkelman, and Nancy Keating, reported receiving grant support (via their institution) from the National Cancer Institute.
1. Weeks JC, Catalano PJ, Cronin A, et al: Patients’ expectations about effects of chemotherapy for advanced cancer. N Engl J Med 367:1616-1625, 2012.
The study by Weeks and colleagues is an important one that shows quite unexpected results. There are three main possible reasons for the very low rate of accurate reporting by the patients: (1) Physicians are not communicating prognosis adequately. (2) Patients are unable to understand the...