This issue of Oncology Times will be published on Christmas Day, about five weeks from now as I write this. I have not sent a wish list to Santa in many years, and most of us professionals in our 70s have more of anything than we could possibly need or want. My wife and family struggle to find something they think I would enjoy, but as often as not they give me stuff I don't want—e.g., books I have no interest in, a tie without the Jerry Garcia label, etc. I smile and thank them, of course, more for their persistence and love than the value of the soon-forgotten and perishable gift.
The fact is that most gifts are “just stuff.” A few years ago my sister's house caught fire, causing major damage (but no injuries, thank God). I spoke to her by phone and tried to console her, but though she was upset with what she knew she must deal with, she finally said, “You know, its all ‘just stuff’ and can be replaced. We are all physically OK here and we just need to get up and move on.”
So before my family starts shopping or pumping my wife for any clues about gifts I might enjoy, I thought I would make a list of gifts that I would deeply appreciate and relish. These gifts are not easy to fulfill, and no one person can get them for me, but my list is brief:
1. All surgical oncologists will henceforth tell their patients that they removed the tumor they could see, but not the inevitable microscopic tumor they cannot see. Many surgeons do this as a matter of course and as a way of preparing patients for other therapy or close follow-up examinations. But too many do not for many reasons: (a) Not wanting to put an “unnecessary burden” on the patient and family after a technically successful operation; ( b) Not wanting to take the time to discuss details that he/she may not be involved with directly, such as potential chemotherapy, radiation, or hormone therapy; and (c) Preferring to punt the discussion of subsequent care until the pathology report is final, when it is likely that the patient will be under the care of other specialists. All of these explanations are understandable, but not an excuse for avoiding what I suggest for my Christmas gift.
2.All medical oncologists will henceforth make certain that patients with Stage IV lung cancer or colorectal cancer (and others with the same prognosis) clearly understand that chemotherapy cannot cure their cancer. I have always believed that most medical oncologists make this important point clear to the patient and family. And I can hear many of you thinking “we always do that.” But it seems that is only partly true.
An important paper on this specific issue by Jane Weeks and colleagues at the Dana Farber Cancer Institute has recently been published (NEJM 25 October 2012;OT, 12/10/12). They reported on data from a cohort of 1,193 patients enrolled in the Cancer Care Outcomes Research and Surveillance (CanCORS) study, a national, prospective observational effort to study outcomes. All patients were initially diagnosed with Stage IV lung or colorectal cancer and all received chemotherapy and survived at least four months from diagnosis. The authors sought to characterize the prevalence of the expectation that chemotherapy might be curative and to identify the clinical, socio-demographic, and health system factors associated with this expectation. Professional interviewers gathered the data from patients.
Overall, 69 percent of patients with lung cancer and 81 percent of those with colorectal cancer reported that before therapy began, they did not understand that chemotherapy would not cure their cancer. Educational level, functional status, and the patient's role in decision-making were not associated with such inaccurate beliefs about the effectiveness of chemotherapy. These inaccurate beliefs were somewhat more common among Hispanics compared with non-Hispanics, and nonwhite patients compared with whites. The mistaken beliefs were also more common among patients who rated their communication with their physician favorably, compared with those who rated the communication less favorably.
The authors offer the following explanation:
“Multiple studies have documented that oncologists usually tell patients when their disease is not curable. However, it is clear from the results of this 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.
“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.
“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. Much less has been written about how to help patients recognize that treatment is not curative.
“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.”
I can think of another reason for these results. We oncologists believe we must offer some hope to the patient; this is easiest at the very beginning of therapy and explains the quick tap dance past the incurability fact, which we cannot control, to giving chemotherapy, which we can control.
It is our duty, I believe, to offer hope, but not irrational or unscientific hope. We must structure hope to the circumstances; when we cannot cure, we must make it clear that we are often able to mitigate symptoms, enable the patient to enjoy a more pleasant time at home instead of the hospital, and assure the patient that he/she will be told the truth and will be offered comfort and clarity.
Patients may make different decisions about accepting aggressive chemotherapy or they may ask to seek another doctor more willing to “go for broke.” That is their privilege. But the authors of this article also have pointed to some published methods for helping the patient understand their plight in a humane but more structured manner. This could be a worthwhile tool for this common and difficult problem.
So why did I ask Santa for these two gifts? Because I believe that: we should respect patients' rights to know their prognosis when we know it; we should respect their ability to make decisions for their care based on the truth as we know it; and we should be conscientious and prudent about the use of toxic and expensive treatments.
Experienced oncologists can tell when a patient has unrealistic expectations and know how to provide gentle and humane reminders of the limitations of the treatment. The goal is for the patient to understand that there are rational options in supportive care, including limited chemotherapy to help control symptoms, and of being able to spend more of the remaining weeks or months of life more comfortably at home with family.
My own family has been very grateful that my mother made that choice six years ago, leaving us with a lasting positive memory of those final golden weeks full of laughter and tears and nostalgia, with mom in her own home surrounded by a large extended family. That was her gift to us.