Oncologists Divided Over What To Tell Terminal Patients

March 16, 2009
Kurt Ullman

A study says medical oncologists are divided over whether they should always inform a patient about his or her terminal prognosis or do so only when a patient asks.

It has been shown that terminally ill adults benefit from understanding their prognosis, partly because it allows them to make informed health care decisions. Despite this, a new study says medical oncologists are divided over whether they should always inform a patient about his or her terminal prognosis or do so only when a patient asks.

Christopher Daugherty, MD, associate professor of medicine at the University of Chicago’s Pritzker School of Medicine, and co-author of the study, said that the way oncologists handle communicating the prognosis of patients with cancer has not been closely studied. “There was a time when physicians did not tell their patients that they had cancer. Now, it is expected that doctors will tell patients not only about cancer diagnosis, but also prognosis,” which he said includes an estimation of life expectancy in many cases. Dr. Daugherty noted that while most oncologists believe they communicate effectively with their patients about these issues, anecdotes and studies offer up a wealth of data that indicates patients do not understand these issues.

A self-reporting survey was sent to 1,137 physicians throughout the United States, of which 729 were completed and returned. Physicians who responded had been practicing medicine for a median of 18 years and saw an average of 60 patients each week.

Almost all respondents (98%) said it was their usual practice to tell terminally ill patients that their cancer was fatal. Nearly half (48%), however, said they did so only when the patient requested the information. Approximately 60% of the physicians indicated that in cases where the patient did not express interest in knowing his or her prognosis, they were likely to share the information with a spouse, relative, or close friend of the patient. Dr. Daugherty said he it was interesting that although nearly all oncologists responded that they tell their patients about the terminal nature of their disease, not everyone did so regardless of the patient’s preference or made it a point to ask the patient or family what they wanted to know about prognosis.

The findings suggest that, overall, oncologists believe they are communicating this effectively to their patients, said Dr. Daugherty. “The devil is, as usual, in the details,” he added. “It gets much more complicated when discussing what do you tell them and how do you tell them.”

Less than half (43%) of respondents said they always or usually give the patient an estimate of when death is likely to occur. The rest answered that they “sometimes,” “rarely,” or “never” give a prognostic timeframe. Yet nearly 74% of the oncologists said they would want to know about their own prognosis, including a medical estimate of the time remaining prior to death.

“We know that there is an obligation to tell people if they have a terminal disease to help them make needed decisions both within and outside of healthcare,” Dr. Daugherty said. “Yet many oncologists loathe having to make those kinds of pronouncements because they know they are almost always going to be wrong.”

Physicians generally felt satisfied with their own communication practices in discussing these issues. Those responding said they were “always” or “usually” satisfied 90% of the time. They believed their patients were “always” or “usually” satisfied at similar levels.

The study indicated that training might be an issue. Approximately 73% of responding physicians said they had little to no formal instruction on communicating prognosis. Most of those who thought they had proper training said they received it during medical school or after completing residency. More than 90% thought the topic should be incorporated in training to care for patients with cancer.

“Oncologist should look at these data and see where they fit in,” said Dr. Daugherty. “Whatever their attitudes and practices are, they can probably be made better through additional education.

Diane Morse, MD, assistant professor of interal medicine and psychiatry at the University of Rochester (NY) School of Medicine, was not involved in the study, but she said it was well done and there was much to learn from the results. She noted that the usefulness of the information was somewhat diminished, however, without independent confirmation that what the physicians said had occurred actually transpired or to determine whether the patients were truly satisfied. Other published studies suggest that patients do not always share their concerns with their physician. This might leave the physician with an inflated perception of how well he or she is doing in this regard. “The results suggest many oncologists feel that they are doing an excellent job and that patients are satisfied, yet other data indicates that patients are not really happy,” Dr. Morse said.

She also cautioned that it should not be assumed that every patient wants to be informed of his or her exact prognosis. “The important thing,” she said, “is to see what the patient wants to know and then find out what the patient actually took away from the communication.”

Dr. Morse pointed out that discussing a terminal prognosis is emotionally charged for the patient and the physician. This sometimes makes it difficult to supply this information and remember to assess what the patient comprehends. “The take home message is that physicians need to have a better understanding of what the patients want and what they understand,” she said. “They should probably assess the patient’s desires for communication in much the same way as they assess the size or location of the tumor.” Factors that might influence whether a physician discusses prognosis with a patient might include age or the patient’s mental health status.

Robert Arnold, MD, Leo H. Creip Professor of Patient Care at the University of Pittsburgh School of Medicine in Pennsylvania said he was not surprised by the results. “Oncologists have a really hard job in thinking about how much to say about prognosis because there is wide variation in what individuals or families want to hear,” he explained. “I was impressed by the number of physicians who said they should tell patients if the patient wants to know. But it is hard for the physicians to be nuanced in what they say,” he noted.

One interesting result from the study was the generational differences between physicians in dealing with cancer in general and discussions of prognosis, in particular. The study showed that younger oncologists were more likely to talk to patients about a terminal prognosis, which Dr. Arnold said was not surprising. “I think we forget how much culture has changed over just one generation,” Dr. Arnold said. “In the late 50s and early 60s, similar studies would have shown that physicians might not have even told the patients that they even had cancer.”

Nothing that the study showed 40% of physicians said patients should be informed of their prognosis even if it went against their wishes, Dr. Arnold said, “While I am pleased that attitudes have changed so much, I am concerned that doctors are giving information that patients may not want to know.”

Dr. Arnold believes that communication between oncologists and their patients about prognosis is improving, overall. “As a profession, oncology has spent a great deal of time talking about how to better give prognostic information,” he said. “There has been a very strong push over the last 10 years to train people how to handle telling people about their prognosis,” he said, adding that it was becoming “a central part of oncology programs now.”

J Clin Oncol.

Daugherty CK, et al. What are terminally ill cancer patients told about their expected deaths? A study of cancer physician’s self-reports of prognosis disclosure. 2008;26:5988-5993.