I am a family physician and also provide palliative care. What I usually say to my seriously ill patients is, “We are in a situation where there is some uncertainty. I’m hoping for the best and that you’ll beat the odds. Do you want to know more?— Ronald M. Epstein, MD
A recent study1 published in the Journal of Clinical Oncology (see “Breaking the ‘Conspiracy of Silence’” in this issue of The ASCO Post) found that just 1 in 20 patients with advanced, incurable cancer has sufficient understanding of his or her prognosis or life expectancy. Now, another new study has examined the prevalence of prognostic discordance between patients and their oncologists; it showed that not only is patient-oncologist discordance about survival prognosis common, but that patients rarely knew their opinions differed from their oncologists’ opinions.2
The study by Ronald M. Epstein, MD, and his colleagues included 236 patients with stage III or IV cancer and their 38 oncologists in a randomized trial of an intervention to improve clinical communication. In the study, both patients and oncologists were asked their opinions about the patients’ survival. Oncologists were asked, “What do you believe are the chances that this patient will live for 2 years or more?” Patients were asked, “What do you believe are the chances that you will live for 2 years or more?” Patients were also asked how they believed their oncologists rated their chances at 2-year survival.
The study findings showed that 68% of the patients rated their survival prognosis differently from that of their oncologists, and nearly all patients were more optimistic about their prognosis than were their oncologists. In addition, among the discordant patients, most did not know their opinions differed from their oncologists’ opinions. The study also found that nonwhite patients were at a substantially higher risk of holding optimistically discordant opinions about their prognosis than their white counterparts, although the sample size was too small to allow the researchers to draw any firm conclusions.
According to Dr. Epstein, because conversations about cancer prognosis are often fraught with uncertainty about treatment effectiveness and life expectancy, patients nearly always choose to be overly optimistic about their prognosis. “The reasons for this are many,” he explained. “It is only natural to want to hope for the best, but patients often find the words oncologists use to be confusing. For example, an oncologist might say to a patient, ‘Let’s try this new chemotherapy; it has a response rate of 50%,’ and the patient may interpret the word ‘response’ as a ‘cure,’” added Dr. Epstein.
In a wide-ranging interview with The ASCO Post, Dr. Epstein, Professor of Family Medicine, Psychiatry, and Oncology and Director of the Center for Communication and Disparities Research at the University of Rochester Medical Center in New York, discussed his study results; how the media help perpetuate the publics’ unrealistic optimism about cancer cures; and how mindful practice may promote more effective communication with patients.
Theories on Prognostic Discordance
Do you know why the majority of patients with advanced cancer in your study had a more optimistic opinion about their life expectancy than did their oncologists?
This is speculation, because we haven’t drilled down on the exact reasons why there is such prognostic discordance between patients and their oncologists, but some of the difference may have to do with the language used when giving a prognosis. Oncologists may be frank in their discussion about prognosis, but they can only offer a range of time. For example, they might say, “Most people with this cancer live for 6 to 12 months, but there are some people who live 2, 5, or even 10 years.” And what the patient hears in that sentence is the part about the 10 years and not the part about the 6 to 12 months.
Another reason may be a misguided intention by oncologists to maintain hope in patients by giving patients a better prognosis than what oncologists actually believe. Even this past year, when we interviewed oncologists, many still said they intentionally paint a more optimistic picture than what they actually believe.
The other explanation is that as patients become sicker, they often want to know less about their life expectancy; and rather than address the issue of end-of-life care, they avoid having the conversation entirely and ask the oncologist to talk with a family member. And although this is understandable, it is usually the patients who have to make the decision about which treatment to pursue or not pursue and what the next steps might be.
How Much Patients Want to Know
All patients want to be the exceptional responder to a treatment and beat the odds. How can oncologists communicate more clearly with patients that even though there is a life-expectancy range, they may not fall at the high end?
I am a family physician and also provide palliative care. What I usually say to my seriously ill patients is, “We are in a situation where there is some uncertainty. I’m hoping for the best and that you’ll beat the odds. Do you want to know more?” And if they say they are ready to hear more details, I might say, “The majority of patients with your advanced cancer have a life expectancy of 6 to 12 months, but clearly there are exceptions. Perhaps you even know some people who have done better or worse than the average. Some people live longer, and others do not. The important thing now is to hope for the best but also to plan for the worst if things don’t go the way we want them to.” In this way, oncologists can help their patients maintain a degree of realistic hope while establishing patients’ wishes for end-of-life care.
These discussions about goals of care are more difficult for patients and clinicians to have than the ones about the mechanics of care, for example, which chemotherapy treatment to try next. There are some patients who will say, “I don’t want to hear anything negative. I just want to concentrate on the positive.” And in that circumstance, oncologists can say, “Sometimes patients’ wishes for information change over time, so if at any point you do want to have a discussion about what is likely to happen and when, please let me know. I’ll be here to answer your questions.”
Media and Cultural Influences
Do media stories about the next cancer treatment breakthrough and examples of treatments that are extending lives contribute to patients’ unrealistic expectations about their prognosis?
I think they do. Recently, The New York Times featured a story, “Harnessing the Immune System to Fight Cancer,”3 and the prevailing message was that if your doctor is offering immunotherapy, run, don’t walk, to get it. Over the past year, I’ve had two patients die of complications from immunotherapy who likely would have lived longer had their cancer gone untreated. Yet, in the Times article, mention of side effects from the therapy was buried deep in the story. I would love to believe that every patient with cancer could be cured by a new treatment, but news stories of this type do a disservice to patients and short-circuit having the more difficult discussions of what to do if the treatment doesn’t work and there are complications.
Another contributing factor in patients’ misunderstanding about prognosis is cultural. For instance, we interviewed groups of patients with advanced cancer in the United States and in Australia about what questions they would like to ask their doctor about their survival estimates, chances of cure, and prognosis. Patients in the United States said they didn’t want to ask their oncologists those questions right now and that their oncologists would tell them what they needed to know. In contrast, the Australian patients were quite blunt in demanding to know how long they were going to be around and not wanting to leave it to their oncologists’ discretion about when to give them the information.4
Religious views matter, too. Among some Orthodox Jewish, Christian, and Native American patients, talking about death may be discouraged.
Improving Communication Through Mindfulness
You have developed programs in mindful practice to improve communication between patients and physicians. How can mindfulness techniques help physicians become better communicators?
I define mindful practice as a purposeful, nonanxious, reflective presence applied to any area of medicine. Mindfulness is a state of mind that permits insight and enables physicians to respond compassionately and clearly to a patient in distress or a difficult decision—to listen deeply to themselves and to others. These are the qualities considered by many to be the prerequisite for compassionate care, and I believe that practicing mindfully may reduce errors resulting from inattention and haste and might even limit the use of aggressive care for patients who are not likely to benefit from it.
When I have to have a difficult conversation with a patient, I am aware the process is emotionally painful and can feel my breath quickening and my muscles tensing. Mindfulness teaches me that I don’t have to avoid negative feelings or run away from them. It develops the presence, strength, and resilience to be aware of those feelings and not feel the urge to change them.
During a difficult conversation with a patient you can feel anxious and sad but still be able to stay with the patient and not feel devastated. By making yourself more aware of your own feelings and regulating your internal responses, you become more resilient and energized and likely experience less burnout. ■
Disclosure: Dr. Epstein reported no potential conflicts of interest.
3. Grady D: Harnessing the immune system to fight cancer. The New York Times. July 30, 2016. Available at www.nytimes.com/2016/07/31/health/harnessing-the-immune-system-to-fight-cancer.html?_r=0. Accessed August 31, 2016.