Patient Expectations About Their Cancer Treatment

Deborah Schrag, MD, MPH

Today we discuss patient expectations about their cancer treatment. I am joined by Dr. Deborah Schrag, associate professor at Harvard Medical School and oncologist specializing in gastrointestinal cancers at the Dana Farber Cancer Institute. The results of a study Dr. Schrag and colleagues conducted on how patients with advanced cancer view their chemotherapy treatment in terms of expectations and understanding the purpose of the treatment were recently published in the New England Journal of Medicine.

-Interviewed by Anna Azvolinsky, PhD

Cancer Network: Dr. Schrag, could you describe the design of the study and impetus and also the major questions it addressed?

Dr. Schrag: This was a survey of patients, a comprehensive survey of patients with newly diagnosed lung and colorectal cancer about many aspects of their treatment. The study was called Share Thoughts on Care, and it included patients, their caregivers, from multiple sites across the country-patients treated at the MACA, patients treated in managed care settings, for example, Kaiser. We included patients from North Carolina, California, really a broad class of patients. The goal was really to understand patients’ perceptions and viewpoints about what the experience of cancer is actually like. The question we focused on in this particular paper is patients’ expectations and understanding of the goal of chemotherapy treatment. Specifically, what patients’ expectations were about the likelihood that chemotherapy would provide them with benefit, specifically in terms of the likelihood of achieving a cure.

Cancer Network: What was the age range of the patients in the study? Were they mostly older patients?

Dr. Schrag: There was a range. The nice thing about this study is that it is really population based, so a nice sampling of what typical patients with these diseases, lung and colorectal cancer, would look like. It is really representative. There are younger patients and older patients, it really spans the spectrum.

Cancer Network: The study results showed that at least two-thirds of the more than 1,000 patients in the study believed that their chemotherapy treatment could cure them, is that correct? What were some of the other results you found?

Dr. Schrag: So, our most concerning finding is that there just seems to be a mismatch between expectations and reality. Patients did not recognize that chemotherapy is very unlikely to provide a cure. Some patients did understand correctly that chemotherapy is very unlikely to provide a cure in the context of stage IV diagnoses for these common cancers. But many patients, approximately two-thirds, did not recognize that. And that just suggests that there is a disconnect, a communication issue that we need to get a better handle on.

Cancer Network: Are there certain types of patients that your study suggests are more likely to be out of tune or are these miscommunication issues perhaps with their clinician? Is age a factor here?

Dr. Schrag: We looked at a whole number of factors and there were a few that seemed to make a difference, but curiously, age was not one. Colorectal cancer patients were a bit more likely to not understand that chemotherapy was unlikely to be curative compared to lung cancer patients. That was a factor-which type of cancer the patient had. There was a small trend that patients treated in integrated health networks systems, so managed care systems, seemed to be a bit more likely to have expectations that were better aligned with reality. Patients who belonged to a minority group or minority-ethnicity group also were a little bit more likely to not understand, to not have a good handle on realistic expectations about what chemotherapy can and can’t do.

Cancer Network: Do you think that the results reflect the status of the majority of advanced cancer patients throughout this country and perhaps, is this also a reflection of where the patient may be treated, at a community hospital versus an academic center for example?

Dr. Schrag: The real strength of the study is it included patients who were treated at both academic centers and community centers so I think that the finding is likely to be valid. In other words, if you went out today and repeated this study with a different sample of patients, you would find very much the same thing.

Cancer Network: What do you think the remedy is? Better communication on the side of the oncologist? Do you think that oncologists are not so willing to speak about the actual odds of the patients surviving for long with their advanced cancer?

Dr. Schrag: I think that our study finding really raises just how complicated an issue this is. This is not as simple as saying this is all the patient or all the physician. It is clearly some of both. It is possible for excellent clinicians to convey compassion and hope and provide realistic information about what chemotherapy can and cannot achieve to help patients make their decisions. But, clearly, sometimes this doesn’t happen. Sometimes people just have expectations that are just not well aligned with reality. And we need to look at this more carefully. We need to think about strategies to improve communication. Sometimes it may be that physicians are hoping for the best possible outcome that may be related to issues such as framing. “Here is what is possible” is very different than “here is what is probable.” It is certainly reasonable to give patients information about what may happen, the best-case scenario, if you will. But people also need information about what is most likely to happen. I don’t think it is that physicians are being dishonest with their patients. It may be sort of framing, trying to convey hope and be compassionate and supportive at the same time they are trying to deliver very difficult news and difficult information to deliver and harder still to hear.    

Cancer Network: There have been studies showing that many terminal cancer patients receive aggressive, and often times expensive, treatments very close to their time of death from cancer. Do your results perhaps suggest that with better communication between clinicians and patients and their families, patients and their families will be able to better understand the odds of such treatment succeeding and perhaps opt for palliative and hospice care earlier in the course of their advanced disease?

Dr. Schrag: We can’t say that that will happen for sure, we don’t know that. But I think that is certainly a possibility. You know, patients might make the same decisions about receiving their chemotherapy or they may make different decisions, but I think it is really that we need to figure out a way to convey information, even difficult information effectively, and we need to do a better job. And that probably involves helping both physicians and patients. I think it is possible to teach communication skills. It is also possible to not put all of the pressure on the doctor–patient relationship. We usually treat patients in the context of complicated healthcare settings where there are multiple members of the team-chemotherapy nurse at a minimum, but often a social worker, and other caregivers. So there are alternative ways to communicate and team members can really work together to help make sure patients have all of the information they need to make good decisions. Could that potentially help us cut down on chemotherapy very close to end of life among patients whose overall functional status and quality of life is so limited that they are unlikely to derive benefit from the treatment? I think that is absolutely a possibility.

Cancer Network: Anything else you would like to highlight about the results or maybe of follow-up studies that are ongoing?

Dr. Schrag: Yes, I think that follow-up studies are really trying to figure out what we can do to intervene to improve upon this situation and help make sure that patients and physicians are making informed decisions, and that is really challenging. And we need to do that without taking away people’s hopes, without making people feel that they received a devastating diagnosis and that there are no options, that is clearly counterproductive and not the case. But getting people good information, and then letting them make the best decisions for them is critical. I think the Patients’ Center Outcomes Research Institute is really focusing millions of dollars on making research grant opportunities available. We and others are competing for some of those awards to try to try to figure out how we can do better at this.

Cancer Network: Great. Thank you so much for joining us today, Dr. Schrag.

Dr. Schrag: Okay, you are welcome.