“Self-deception is a valuable personal coping tool. It allows us to aspire to significance, strive for new knowledge, and yearn to make a lasting contribution to the world despite the certainty of our inevitable end.”
Interesting words, and printed in an interesting place. No, they were not spoken by a post-election apolitical pundit. They are the opening lines to an editorial in the October 25 issue of the New England Journal of Medicine, entitled “Talking with Patients about Dying.” The editorial, by Thomas J. Smith, MD< and Dan L. Longo, MD, accompanies a newly published study, "Patients' Expectations about Effects of Chemotherapy for Advanced Cancer," revealing that a surprisingly high percentage of late-stage colon and lung cancer patients who think chemotherapy could be curative.
The study, by Jane Weeks, of the Dana-Farber Cancer Institute, and colleagues (the senior author is Deborah Schrag, also of DFCI), used data from the Cancer Care Outcomes Research and Surveillance (CanCORS) study. In the CanCORS study, about 10,000 cancer patients from five geographic regions diagnosed with lung or colorectal cancer were surveyed on various matters pertaining to their care in order to assess the quality of cancer care and health outcomes in the United States.
Weeks and colleagues honed in on 1,193 participants in the CanCORS study, all of whom had stage IV – metastatic; terminal – disease. All of these patients had chosen to receive chemotherapy treatment. Through a survey, the questions were asked about what they believed chemotherapy could accomplish. What was the likelihood that chemotherapy could cure their disease? What was the likelihood that chemotherapy could extend their lives? Alongside these questions, patients were asked whether they’d discussed the benefits of chemotherapy with their physicians.
In response to the question, “After talking with your doctor about chemotherapy, how likely did you think it was that chemotherapy would … help you live longer, cure your cancer, or help you with problems you were having because of your cancer?” Within the confines of the survey, patients could respond “very likely,” “somewhat likely,” “a little likely,” “not at all likely,” or “don’t know.”
Patients were asked to assess how carefully and how often their doctors explained their disease, the treatment options, the prognosis, and answered any questions patients had. The cohort was also asked to assess their role in choosing what treatment to pursue: how much was it their choice, and how much had their family members (or physician) weighed in?
And here is what the survey showed:
“Overall, 69% of patients with lung cancer and 81% of those with colorectal cancer gave answers that were not consistent with understanding that chemotherapy was very unlikely to cure their cancer,” the authors write.
More than 20 percent of patients with lung cancer (N=710) and more than 30 percent of patients with colorectal cancer (N=483) responded that they thought chemotherapy was “very likely” to cure their cancer. A nearly equal proportion responded “somewhat likely.” Plenty of patients did also respond that chemotherapy was “not at all likely” to cure their disease (more than 30 percent and more than 20 percent, respectively).
About 50 percent of lung cancer patients and nearly 70 percent of colorectal cancer patients said that chemotherapy was “very likely” to extend their lives. Fewer than 10 percent from each group responded that chemotherapy was “not at all likely” to offer life extension.
And, more than 30 percent and nearly 50 percent from each group, respectively, said that chemotherapy was “very likely” to relieve symptoms of advanced cancer.
The authors have a lot to say on the matter. Such as:
“Chemotherapy may offer palliation and some prolongation of life, so it represents a reasonable 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.”
In other words, if a patient is under the impression that chemotherapy might cure advanced cancer, then is offering chemotherapy to that patient ethical, under the principles of informed consent? Such thinking reflects a lack of accurate information, so consenting to treatment could only be seen as uninformed.
Maybe. The survey also raises questions about how well physicians are doing at having the most difficult of conversations. As Smith and Longo write in their accompanying editorial:
“Truthful conversations that acknowledge death help patients understand their curability, are welcomed by patients, and do not squash hope or cause depression. We need help breaking bad news. This is not one hard conversations for which we can muster our courage but a series of conversations over time from the first existential threat to life.”
Interestingly, patients who were treated in integrative networks were a bit more likely to accurately understand what chemotherapy could offer compared to those treated outside of an integrative network, a result that, the authors suggest, might indicate that providers “may be able to improve patients’ understanding if they feel it is part of their professional role.”
Clearly patients themselves are also responsible for understanding the reality of the treatment they are seeking. The authors raise an intriguing point about “collusion” between patients and physicians, where the discussion moves too quickly from the facts of the prognosis to the potential treatment options, a phenomenon reported in this study from 12 years ago exploring the reasons behind false optimism about recovery among cancer patients.
The editorial also highlights the stubborn clinging to an inaccurate belief about chemotherapy. “When patients are given their actual prognosis, one third or more will not admit that treatment will not cure them,” Smith and Longo write, citing two studies on the matter (this one [on which Smith is first author] and this one).
As Weeks and colleagues note, the primary concern with inaccurate expectations about chemotherapy for late-stage cancer is that they can get in the way of dying well. End-of-life planning takes time and thorough, honest conversations. If someone is holding onto hope of a cure, such conversations are far more difficult if not impossible.
The editorial also mentions cost issues. About one quarter of all Medicare spending is done in the last year of life, a percentage that is the same as it was 20 years ago. “Costs reflect care for multiple severe illnesses typically present near death,” the authors of the Health Affairs report noting this percentage wrote. What’s more, say Smith and Longo, “Chemotherapy near the end of life is still common, [and] does not improve survival…” This isn’t to say that all of that last-year-of-life Medicare spending is on chemotherapy, but that cost is definitely a significant contributor.
Weeks et al note some weaknesses of their study. The survey was done several months after diagnosis, so patients who died shortly thereafter were not included. And, the survey was done on a single occasion, so any shifts in belief over time were not documented. Also, patients may have been biased toward optimism by the simple presence of an empathetic interviewer. Finally, the survey was not set up to probe into the underlying psychologies that may have impacted or guided patients’ beliefs about their treatment.
The authors make an interesting point at the end of the publication. “…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.”