Once again, a scientific paper about oncology practice reported in the lay press has led some to conclude that cancer specialists are not honest with their patients with advanced cancer about the incurable nature of their illnesses. Considering that these same doctors are the ones recommending chemotherapy, many will assume that there must be some connection. As one Australian radiologist tweeted in reaction to the article: “Alternate title: Many patients receiving chemoRx not adequately informed re ineffectiveness.” What a terrible group of doctors we must be!
The recently published NEJM research article, Patients’ Expectations about Effects of Chemotherapy for Advanced Cancer, authored by Jane Weeks, points out a dilemma that oncologists have recognized dating back to the beginning of modern oncology: Patients very frequently have unrealistic expectations about the probable outcomes of their treatments for advanced cancers of all types. In this well designed large study, the investigators found that many patients with metastatic colon or lung cancer believe that their therapies will be curative. Based on previous studies of what oncologists tell their patients, it is almost certain that most of them were told about the likely outcome of their therapy but either did not understand, consciously chose to not to acknowledge the information during the study or, in a time of extreme stress, demonstrated some degree of denial, perhaps supported by an underlying belief system associated with faith in God, science or both. Unfortunately, the study did not assess in any way patients’ coping mechanisms or the strength of their religious beliefs.
What does this imply about the decisions patients make about their treatments? The concept that informed consent about treatment is not truly informed because patients don’t understand the likely outcomes of the therapies is not unique to this study. Research has shown that cancer patients entering phase I drug development studies are routinely informed about the very low likelihood of personal benefit yet when questioned many express a belief that they are much more likely than everyone else to benefit. This phenomenon has been described as “the culture of faith and hope” and often reflects an attitude of optimism rather than information level. It may also reflect the patients’ belief that they are in a battle with cancer and admitting the eventual outcome concedes defeat in their fight.
An interesting correlation was demonstrated in the Weeks paper between the patients’ perceptions of their physicians as communicators and their likelihood of correctly understanding that their treatments were not curative. Those who did not seem to understand the likely outcome of their treatments were statistically more likely to rate their doctors as excellent communicators. This suggests that the lack of understanding was not related to inadequate time or effort spent in patient communication and education since in many studies patient satisfaction is related to time spent in communication. More intriguing is the possibility that extra effort or emphasis on the poor expected outcome might lead to greater understanding but a lower satisfaction with the doctor-patient relationship. Perceived over-emphasis on the poor prognosis might be viewed as insensitive or uncaring. Although greater understanding at first glance would appear to be a clearly preferable outcome and denying patients exposure to this information is definitely inappropriate, might there be some patients who would be better off with unchallenged denial and a stronger relationship with their oncologists?
As medical oncologists, how should we react to the study by Weeks? Should we reinforce our teaching about prognosis, perhaps asking patients to repeat what they have heard? Should we ask them them sign an informed consent document that acknowledges their prognosis and expected outcome of the treatment? Or should we continue to present the information in a balanced compassionate manner including both the potential short term benefits and the expected longer term outcome, assess how patients are dealing with it, and tailor our discussions to navigate toward appropriate expectations without damaging patients’ coping strategies? Can we still provide help and support for patients whose coping mechanisms include denial of the inevitable outcome of their treatment and disease while we assist them to gradually adjust to the reality of the situation? The question for which we really need an answer is whether patients who are forced to acknowledge the likely outcome of their illnesses and treatments have any better outcome or quality of life than those who maintain a “chosen” path of faith and hope. Palliative care specialists might suggest that denial could delay institution of appropriate palliative care but this supportive modality could and should be included regardless of patients’ expectations. For oncologists, the Weeks paper examines issues objectively that highlight one or our long-standing therapeutic dilemmas. For me, the goal remains the same because finding the right path for each individual patient, including how and when to challenge unrealistic expectations, remains part of the key difference between treating cancer and caring for patients who have cancer.
– Rich Leff, MD