12:27pm Thursday 19 September 2019

UW Study: Why Patients Misunderstand Their Cancer Diagnoses

Madison, Wisconsin – Cancer patients and their doctors often collude to avoid the difficult conversation about whether their disease is terminal, a new University of Wisconsin Carbone Cancer Center study finds.

Dr. Toby Campbell, associate professor of medicine and chief of palliative care at UW Health, and his colleagues analyzed 64 recorded routine clinical encounters with lung cancer patients at four academic medical centers across the country to understand the roots of a well-documented phenomenon: Cancer patients often don’t understand that their cancer is not curable.

Campbell and colleagues found that medical visits with oncologists following scans tended to follow a similar script: First, they talked about symptoms; next the oncologist talked about the images from diagnostic scans. This was quickly followed by talk of the next course of treatment.

“We noticed an absence of talk about what the scan results meant – for both good and bad news,” says Campbell, a thoracic oncologist and the study’s senior author. “Scans to assess how chemotherapy is working present the opportunity to talk about the impact of treatment on the cancer. These results show if treatment is going to help them live longer or not.” 

In only four of the 64 sessions was there a frank discussion about prognosis; three of those were in response to questions from the patient or a caregiver. 

“Oncologists routinely face confronting their patients with unwelcome news and the social norms which guide our human interactions lead them to disclose the news in a ways which allows patients to maintain their optimism,” Campbell says. “We also noticed that patients rarely ask their oncologists to be clearer about the news or to talk about the impact on their life. So it’s fair to say the two collude to avoid talking about prognosis.

“However, an inaccurate understanding of their disease also means that they can’t participate in shared decision-making about their options or about end of life care.”

Fortunately, Campbell and colleagues have a simple conversational fix: After revealing the scan results, the oncologist should ask, “Would you like to talk about what this means?”

“This gives control back to the patient who can then can give the oncologist permission to relay bad news, if necessary,” Campbell says. “It also creates space to empathize with the patients.”

To do the study, the scientists recorded 128 oncologist-patient encounters, then used conversational analysis to deeply analyze 64 of those encounters. The 33 of those that included scan results were included in this analysis. The diagnostic imaging scans revealed good news in six encounters, stable news in 15 encounters and bad news in 12. Bad news encounters were the longest, at 20 minutes, and the majority of the time was spent discussing treatment options. 

To avoid disclosing horrible news, the researchers also found that oncologists used a variety of conversation devices, or strategies, to reduce the impact of the news. For example, they might use optimistic language when talking about the results of treatment. 

“Although this conversational technique might seem to ease the emotional reaction to unwanted news in the short term,” the authors wrote, “it also drives the conversation away” from prognosis and reduces the opportunity for the physician to express empathy for the patient.

The study was published online in the Journal of Oncology Practice.

Other UW co-authors include Dr. James Cleary, Dr. Dagoberto Cortez, Dr. Lori DuBenske, a cancer psychologist, and Dr. Douglas Maynard, a UW sociology professor and language analysis expert; the lead author is former UW resident Dr. Sarguni Singh, now of the University of Colorado.

The work is supported by the National Cancer Institute and the Cambia Health Foundation’s Sojourns Scholars grant to Dr. Campbell.

University of Wisconsin School of Medicine and Public Health


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