SAN DIEGO — Patients diagnosed with hematologic malignancies seem to want information from physicians about treatment options and recommendations but less information about the likely course of their disease, preliminary results from an ongoing study suggest.
Many studies in the medical literature have explored ways to break bad news during end-of-life care, but “much less has been done in the middle, when patients facing an acute illness are really looking for guidance and information and are seeing a subspecialist for the first time,” Stephanie J. Lee, M.D., said in an interview prior to the annual meeting of the American Society of Hematology.
“While physicians appear to be communicating with patients in ways that result in high degrees of satisfaction, maintain hope, and do not diminish patients' sense of depression or anxiety, patients are retaining overoptimistic prognostic expectations after their consultation,” Dr. Lee said.
She and her associates interviewed 83 patients with hematologic malignancies at the Dana-Farber Cancer Institute, Boston, between September 2002 and September 2003. Prior to coming to Dana-Farber, the patients had been seen by 15 physicians in six different states. Investigators interviewed the patients before and after their consultation with a cancer subspecialist at Dana-Farber, and all consultations were tape recorded.
Of the 83 patients, 83% were white, and 54% were men. The average age was 58, and the median time from diagnosis to study enrollment was 69 days.
The main diagnoses were non-Hodgkin's lymphoma (31%) and multiple myeloma (29%).
Overall, 41% of the patients wanted to be an equal partner in decision making, while 36% wanted to take primary responsibility for the decision, said Dr. Lee of Harvard Medical School, Boston.
“Almost everyone wanted to discuss treatment options, treatment goals, and physician treatment recommendations, but fewer wanted to discuss average patient survival, likelihood of treatment success, likelihood of cure, or clinical trials,” she said.
Most patients (70%) wanted prognostic information in percentages, and 64% wanted to hear how previous patients fared; only 44% wanted to hear qualitative expressions of probability.
“We didn't ask the patients, 'How would you like to be told if the news was bad?' We did ask, 'If you were going to hear about prognosis, how would you like your doctor to tell you about prognosis?' Most said they wanted to hear percentages,” Dr. Lee said.
When patients were asked to estimate their chance of cure or life expectancy prior to their subspecialist consultation, they “were much more optimistic, compared with their physicians,” she said. “After the consultation, most patients' prognostic estimates were unchanged.”
She added that most patients were “very satisfied” with their consultations, and most reported the same or improved depression, anxiety, and hope after.
Patient optimism “is a pretty universal finding,” Dr. Lee concluded. “They were accessing a lot of different sources of information when we talked to them—even before they saw the subspecialist. And yet they were still quite optimistic, compared with what the doctor was saying in terms of what might be out there in the literature. There's this sort of human optimism that surrounds all kinds of diseases—not just cancers.”
She and her associates plan to enroll a total of 240 patients in the study to explore other components of patient-physician communication. For example, “is there something specific about the way the doctors communicate with patients that make the outcomes better or worse? Better or worse outcomes can result from one communication method. If you're brutally honest with someone, they might get the actual information, but you can cause a lot of depression and anxiety, poor coping, and bad outcomes, as well.”