Navigating Patients' Chemotherapy Decision Making
Patients considering chemotherapy treatment need to understand the risks and benefits of treatment in order to make an informed decision to undergo-or forgo-treatment.
Lisa Schulmeister, RN, MN, APRN-BC, OCN®, FAAN
Editor-in-Chief OncLive Nursing
Oncology Nursing Consultant, Adjunct Assistant Professor of Nursing Louisiana State Health Sciences Center in New Orleans, Louisiana
Patients considering chemotherapy treatment need to understand the risks and benefits of treatment in order to make an informed decision to undergo—or forgo—treatment. This decision is fairly easy to make when the treatment intent is cure, and evidence exists that the treatment is, in fact, curative. The decision to not receive chemotherapy is much more difficult to make.
There is a fine line between hope and despair, and what is said is sometimes not heard. We have no crystal ball to tell us what the future holds for a particular patient, so we have to rely on aggregated data in our discussions about prognosis and possible treatment outcomes. Clinicians understandably tend to move quickly from talking about a poor prognosis and no chance of cure, to talking about doing something, such as palliative chemotherapy, rather than doing nothing at all. However, as we all know, there are instances where forgoing chemotherapy treatment would have been a better decision in terms of a patient’s quality of life, and even life expectancy, as sometimes treatment-related deaths do occur.
Depending on the patient’s perspective, treatment data can be taken any number of ways. Some patients believe that they are going to be in the 10% that respond to treatment and not the 90% who do not respond. Conversely, there are patients who are told that the likelihood of experiencing a certain side effect is low and consequently anticipate that it will occur. It’s partly the “cup is either half empty or half full” perspective and partly how well the information was conveyed in the first place.
In a national population cohort study of 1193 patients with metastatic lung or colorectal cancer, researchers found that 69% of the patients with lung cancer and 81% of those with colorectal cancer who were alive 4 months after diagnosis and had opted to receive chemotherapy had inaccurate expectations about the curative potential of the chemotherapy they received.1 Prior studies had found that only a minority of patients believed that palliative chemotherapy would be curative; however, in the prior studies, patients were asked only if the goal of their treatment was cure or palliation.
In this recently published study, patients were asked how likely they thought it was that chemotherapy would cure them, and most thought that a cure was possible. After accounting for the effect of other factors, including education and income, nonwhite patients were at higher risk for having inaccurate beliefs about chemotherapy, and paradoxically, patients who reported higher scores for physician communication were at higher risk for having inaccurate chemotherapy expectations. It may be the messenger, and not the message, that patients are hearing.
The study findings raise the questions of how well are we providing information on treatment intent so that patients can make informed decisions about chemotherapy treatment, and how are patients receiving and interpreting the information we provide? In addition, since most of the patients were not clear on the intent of treatment, what is the possible impact of this misunderstanding on initiating end-of-life planning and care?
Although treatment intent is usually verbally communicated to a patient, and also often is stated on chemotherapy consent forms, data suggest that patients with advanced cancer may not understand that the chemotherapy is unlikely to be curative. I’m not suggesting that we dash all hopes of disease control or a longer life, but discussions with patients need to be clear about treatment intent. Patient navigators and nurses who provide navigation assistance may be able to improve patients’ understanding of treatment intent and guide patients to timely and appropriate care, such as earlier discussions of end-of-life wishes and earlier referral for palliative care.
1. Weeks JC, Catalono PJ, Cronin A, et al. Patients’ expectations about effects of chemotherapy for advanced cancer. N Engl J Med. 2012;367(17):1616-1625.