‘Betting on a miracle’ a barrier to prognostic understanding among patients with advanced cancer
Religious belief can be a source of comfort and hope for patients with cancer and their families. Additionally, the advent of targeted cancer treatments has led to heightened expectations of beating the odds, even in cases of advanced disease.
These causes for optimism can result in denial of reality after a grave prognosis, which may deprive terminally ill patients of the chance to make the most of their remaining time, according to Holly G. Prigerson, PhD, Irving Sherwood Wright professor of geriatrics, professor of sociology in medicine and co-director of the Center for Research on End-of-Life Care at Weill Cornell Medicine.
“Many patients simply do not appreciate how little time they have left,” Prigerson said in an interview with Healio. “It is disappointing how many patients don’t seem to understand how close they are to death. They think they have years left to live, when the median survival in our studies is 4 months.”
Prigerson and colleagues conducted a prospective study of whether religious belief in miracles diminishes the effect of news of cancer progression on prognostic understanding among 158 patients with advanced cancer and an average life expectancy of no more than 6 months. Results of the study, published in Cancer, showed that among the 108 patients with a moderate to strong belief in miracles, news of cancer progression did not affect their understanding of their prognosis.
Prigerson spoke with Healio about the power of religious belief, its benefits and drawbacks, and how clinicians can incorporate belief in miracles into their conversations with terminally ill patients.
Question: What prompted you to study the impact of belief in miracles on prognostic understanding?
Answer: We’ve been doing a lot of communication interventions that focus on the notion of “gist,” which both represents a term referring to the bottom-line meaning of information, but also is an acronym for “Giving Information Strategically and Transparently.” The point of gist communication is for patients and their family caregivers to get needed basics to make informed choices. Patients cannot participate in informed and shared decision-making if they lack prognostic awareness. They can’t decide how they want to spend the last year of their lives. We have studies looking at what’s said, what isn’t said, what’s heard and not heard and how that affects decisions in care and quality of life down the road.
Through stratification, [lead study author] Login S. George, PhD, revealed that many patients, especially those of African American and Latino descent, have a strong belief in miracles. Many think that if they don’t do whatever is possible or whatever is offered to stay alive until a miracle is granted, they haven’t demonstrated their faith. It seems almost counterintuitive; the most religious patients tend to get the most aggressive care. Religious people consider it their obligation to do everything possible to stay alive; that’s why religious patients often decline do-not-resuscitate orders.
Q: Do these patients simply not believe what physicians tell them about their prognosis?
A: I think there may be some truth to that. In a study published in 2016 in Cancer, we asked patients to provide an estimate of their life expectancy and the source of that estimate. It showed that most patients with advanced cancer do not have an accurate understanding of their life expectancy. Black patients were especially likely to overestimate their life expectancy compared with others. The study also found that medical providers are not the source of life expectancy estimates for most patients with advanced cancer, and not at all for black patients. These participants said they liked and respected their oncologists, but when we asked them why they put so little emphasis on information from the medical community, they said it was because their survival was a matter between themselves and God. So, I think race and ethnicity have a lot to do with this, and these factors have implications for future interventions, including one we are developing with Alan B. Astrow, MD, which we refer to as the Divine Intervention Study. We’re not saying we need to shake people into knowing they’re dying. What we’re saying is that everyone has a right to decide if they want to know the best, evidence-based guess of what that life expectancy might be. If they want to know, they need to be given the best evidence out there, not wishful thinking or hopeful platitudes that are going to undermine how they spend the last few months of their lives on earth because they are denied the option of planning realistically.
For many of these patients, there are competing perceptions of the forces that determine when and how they die. What these results show is that to the extent that a patient puts their eggs into the “miracles” basket, they are going to discount what their oncologist tells them and not incorporate it into their understanding of their prognosis. If they’re betting on a miracle, they’re going to discount all the naysayers, no matter their medical training.
Q: How can oncologists get through to people with this mindset?
A: This is not about evidence. It has to do with faith. Religious patients tend to think if they do everything right, their chance of being granted a miracle by God and surviving this incurable cancer increases. You need to work with that belief rather than against it. Trying to argue against it with more evidence will only make people defensive.
There are communication interventions that work with that belief. They include saying things like, “Miracles can happen outside the hospital as much as they can inside the hospital” or, “Miracles are not confined to certain medical settings or to patients who get certain treatments. Miracles are miracles.”
Part of what we’re trying to do is figure out ways of communicating that will overcome barriers to prognostic understanding so that, to the extent that they want to, patients can make informed choices.
The take-home message is that belief in miracles needs to be addressed, especially among ethnic and racial minorities with firm beliefs in the power of miracles. If clinicians want to improve prognostic understanding among patients who are nearing death, there should likely be some sort of screening for this belief, because it is a genuine communication barrier for oncologists. The oncologist needs to be aware of this barrier and leverage it toward a better understanding of evidence-based realities. – by Jennifer Byrne
Trevino KM, et al. Cancer. 2016;doi:10.1002/cncr.30001.
For more information:
Holly G. Prigerson, PhD, can be reached at 1300 York Ave., New York, NY 10065; email: email@example.com.
Disclosures: Prigerson reports no relevant financial disclosures.