“I Know I'm Going to Beat This”: When Patients and Doctors Disagree About Prognosis

As palliative care physicians who frequently discuss goals of care with seriously ill patients and their families, we often get called because the patient/family is in “denial. ” In a common scenario, we are consulted by a medical team where team members want us to make sure the family “gets it” and then makes the “appropriate” decision for a do not resuscitate (DNR) order or for hospice care. Too often, from the consulting service perspective, the term “denial” is a substitute for “the patient won’t do what we think they should be doing. ” In these cases, our first challenge as clinicians is to understand the patient beliefs that underlie the disagreement, including how the patient obtained them, how those beliefs function in their life and family, and their malleability. In their article, Blumenthal-Barby and Ubel (2018) delineate several reasons that patients and families may express disagreement with our predictions, which often involve an interplay between emotional and social factors. We agree that it is difficult it is to distinguish between denial, self-deception, and unrealistic optimism. In addition, we caution clinicians against seeing any of these states as static. Often, not “getting it” is a stage that patients go through as they adjust to their illness. For example, imagine a surgeon telling a young patient that he needs an above-the-knee amputation to save his life; the patient disbelieves the estimates, saying that he can heal better than the doctors think. It takes a few days for his view of himself to adjust to the sick role and accept the amputation. This is particularly common if the patient’s physical state does not appear to match the clinicians’ prognosis. Families may have trouble accepting a terminal prognosis if the patient is awake and interacting. Clinicians also should not be too quick to assume that what they call “denial” is irrational. Too often, we assume that our beliefs are the truth, while for patients, our information is one piece of data in larger picture. Patients talk to other people than doctors, and we should not assume that our information is the most accurate or trustworthy in their eyes. If my family member (who is a health care provider) tells me not to worry because she thinks I will get better, am I in denial or listening to a person I trust more than you? Anecdotal experience of a friend or family member who survived a similar illness provides more powerful data for many individuals than randomized controlled trials. The Internet is another way lay people gather and evaluate information, and patients may find doctors deficient if they have not heard about a treatment that came up when patients googled their disease. Finally, when predictions conflict with their experience, individuals typical believe their experience. We encounter this often in cases where a patient has come through a succession of critical illnesses and previous medical predictions of impending death have proven incorrect. In other cases, as Blumenthal-Barby and Ubel point out, “denial” may be part of a patient’s coping style; in these cases, rather than being a negative, it is something that helps the patient cope with a scary future. As with Blumenthal-Barby and Ubel’s example of Rodrigo, who has a 5% chance of surviving cancer but takes actions indicating expectation of a longer prognosis, many patients hold two perspectives of their prognosis simultaneously. Jacobsen and colleagues (2018) have described this as a “dual framework” in which the patient swings between expressions of optimism and realism, with the optimism allowing the patient to take a break from difficult realities when needed. Not wanting to “admit” one’s illness also may be the way the family unit copes with illness. This may be part of the culture (“In our family,