To what extent have you discussed your beliefs about a cure with your oncologist?
These questions get at the crux of decision-making for patients with late-stage cancer, but two new Wilmot Cancer Institute studies suggest that dissimilar thinking about a “cure” is a common problem among older adults and their physicians.
Melissa Loh, M.D., a fellow at Wilmot and in the Division of Geriatrics & Aging at the University of Rochester Medical Center, spearheaded both studies by analyzing survey data from more than 500 geriatric patients (older than 70), hundreds of their caregivers, and dozens of treating oncologists.
One of the studies underlined the importance of doctors understanding a patient’s beliefs, values and world view; it discovered that a small group of people with incurable cancer were nonetheless willing to bear toxic treatments and that their decisions may be related an absolutist belief of a 100% chance they could be cured.
In those types of cases, Loh and her team said, it is imperative that physicians draw out patients’ emotions and fixed beliefs with questions such as, “What are you most afraid of?” The goal is to avoid miscommunication so that patients have a clear understanding of the disease’s likely progression.
“Merely telling a patient the facts about his or her prognosis is not enough,” said Loh, a geriatric oncology specialist at Wilmot and corresponding author for the studies.
The first paper, published recently in the American Cancer Society’s journal, Cancer, also pointed out that older cancer patients often have other health problems and it’s important that they make decisions with the whole picture in mind. Some individuals, for example, may view impaired brain function, potentially bad medication reactions, and immobility as “fates worse than death,” the study said. Other patients are willing to trade these adversities for treatments that they believe will allow them to live longer. The survey data showed that individuals who were more willing to trade quality of life for survival were also more likely to believe in a 100 percent cure.
The second paper, published recently by The Oncologist, showed that 60 percent of pairs of older patients and their doctors, and 52 percent of pairs of patient caregivers and doctors, had different ideas about whether incurable cancer could be cured.
Both studies emphasized a need to improve ways to talk about treatment and prognosis. Patients without a strong support system tended to have more discordant beliefs about a cure compared to their doctors. Perhaps oncologists were afraid patients in this situation may not be able to cope with the bad news, the authors speculated. Older patients with advanced lung or gastrointestinal cancer (compared to breast cancer) had the most severe lack of understanding about prognosis — suggesting that “the worse the news, the more difficult it might be for patients to process and encode” and, on the flip side, that doctors are more reluctant to share prognostic information with these patients.
Wilmot is one of the few cancer centers in the nation to have a geriatric oncology clinic and research program. Funding for the studies was provided by donors to Wilmot’s specialized program, the National Cancer Institute, the National Institute of Aging, and the Patient-Center Outcomes Research Institute (PCORI) program.