Abstract
Novel therapies have transformed cancer care and dramatically improved outcomes. Oncologists can now choose from more personalized treatments, including mutationally-targeted therapies, specific pathway inhibitors, and exciting new mechanisms like immunotherapies, including checkpoint inhibitors and CAR T-cell therapies. These treatments have ushered in a new era of hopefulness for patients, families, and clinicians alike, for improved outcomes and better lives with, and beyond, a cancer diagnosis. It is a truly exciting time in the history of cancer treatment.
Along with this transformation has come new challenges. Among these, prognostic uncertainty is perhaps the most prominent. Consider the example of metastatic melanoma. Just a few years ago, it was quite unusual for a patient with metastatic melanoma to survive more than 2 years. We knew what the outcome would be, it was just a question of how much time one might expect to have. Today, with novel immunotherapies like checkpoint inhibitors, a sizable subset of these patients will survive 5 years or more. This is a remarkable achievement, and the recognition of these so-called “exceptional responders” has ushered in a new era of chronic cancer survivorship for some people with previously incurable disease. The problem is that we simply cannot predict who will derive these remarkable benefits, and who will simply suffer toxicities without significant improvement in outcomes. These exciting advances, and the uncertainty inherent therein, challenge our ability to prepare patients and families for the future.
In a new qualitative study of caregivers to patients with melanoma, Fox et al. highlight the tension between therapeutic optimism and prognostic uncertainty in the era of novel therapies. 1 This study highlights what many have been feeling and worrying about in practice: that this newfound therapeutic optimism somehow leads us to avoid planning for the more likely possibility of a negative outcome. While a 20% long-term survival rate is truly remarkable in a historically fatal disease, it is far from a guarantee. Why, then, do we so often put our proverbial eggs in this one basket, the positive one, when we talk with patients and families about novel therapies?
Prior research shows that patients and families want us to hopeful along with them, but that they also do not seek “false hope.” Indeed, they want us to be honest and realistic when approaching prognostic disclosure. 2 Yet many oncologists erroneously feel that it is our job to “maintain hope.” To do so, we often avoid talking about the possibility of a bad outcome, and we are overly optimistic in our prognostic estimates.3,4 While this may feel right in the moment, it is unclear whether it even achieves the desired outcome; honest disclosure of poor prognosis has not been shown to reduce hope at all. 5 Regardless, seeing patients with serious illness day in and day out can be emotionally exhausting. Might it be that our unbridled optimism is just as much an effort to protect ourselves from the sadness of a difficult discussion? Or are we simply falling victim to cognitive biases, recalling that one case where a similar patient did exceedingly well, and expecting this will occur more often than statistics suggest? Interestingly, we still do not know the answer to these questions. For all the literature on clinician-patient communication, we still have a relatively poor understanding of why clinicians say what they say, and do what they do. This important problem warrants further research, beyond just descriptions of what is said and done; we must understand the “why.”
Unfortunately, evidence suggests that we have quite a lot of work to do to improve prognostic communication in cancer care. Analyses of video recordings show that oncologists’ descriptions of prognosis are often vague, do not usually include a survival estimate, and are brief, before quickly moving to the urgency/details of treatment. 6 While we are all excited about novel therapies, we must pause to ensure adequate discussion and understanding of the range of prognostic possibilities.
Perhaps it is our uncertainty about what to expect for each patient that furthers our frequent avoidance of honest prognostic discussions. But it is incorrect to assume that one cannot discuss prognosis if one is uncertain about the outcome. Rather, prognostication can and should involve an exploration of the full range of possibilities, recognizing those uncertainties. We should strive to achieve this balance, and this can be achieved using various methods of “mixed framing” in our communication (e.g. best case, worst case, most likely outcome). 7 Many questions remain, however. Communication research should transition from the mostly descriptive and associative studies done to date, to those developing and testing the effects of particular interventions and communication styles on prognostic understanding, treatment decisions, and receipt of goal-concordant care.
We can do better, and our patients and families certainly deserve it. Prognostic uncertainty is no excuse for poor discussions, but these discussions certainly do not come easy. They require practice, and hard work. Oncologists may also need some help. As integrated palliative care is increasingly the norm in cancer care, discussions about prognostic uncertainty are one area where palliative care specialists can support the cancer care team to enhance the care provided to patients and families.