Oncologists often think they're communicating better than they do.
The vast majority of oncologists feel that they do an effective job in communicating with their terminally ill cancer patients, in direct contradiction to patient surveys that show many patients have come to a dramatically different conclusion.
In a survey of cancer specialists who belong to the American Society of Clinical Oncologists, 93 percent of the oncologists gave themselves high marks on communications and 92 percent felt that their patients would concur with their top grade. But the study's author, Dr. Christopher Daugherty, an associate professor at the University of Chicago, notes that past patient surveys show a high level of dissatisfaction among the patients and their families.
"While physicians may think they are effectively discussing prognosis with terminally ill patients," he concludes, "patients and families may not be receiving the information as it was intended. These data remind us that communication is a two-way street, and that we should be communicating prognosis in a way that's appropriate and effective for individual patients."
One area in greatest need of refinement is communicating expected life expectancy, note researchers. Virtually all of the 559 doctors who took part in the survey told patients that they would eventually die of their disease, but fewer than half said they outlined actual time frames.
"Telling a patient that his or her disease is incurable is an everyday, every-hour issue for oncologists," adds Dr. Daugherty. "This survey shows that while most oncologists will discuss prognosis, they are less willing to give a specific time frame to patients and their loved ones, given that such estimates are frequently inaccurate."
Dr. Daugherty's conclusions don't come as a big surprise to others in the field, especially if you consider that many physicians are often uncomfortable about discussing death and only a minority have been trained how to do it properly.
"When you talk about death and dying and mortality, you're talking about a very, very difficult issue," says Dr. Barbara Murphy, director of the pain and symptom management program at Vanderbilt Medical Center's Ingram Cancer Center. "Oftentimes, physicians, instead of being clear and blunt will step gingerly in an attempt not to hurt patients' feelings and not to precipitate an emotional crisis. But when you step lightly around the issue, you often avoid the issue entirely."
And, she says, "there are clearly physicians who don't like to deal with issues of death and dying and avoid talking about death and dying like the plague, or do it in a very cumbersome or inept fashion. I think there's an art to talking about patients about mortality."
It's also an art that medical schools have only recently begun to teach. But it takes time to change the approach of the oncology profession, adds Dr. Murphy, noting that there's a 10-year time frame for training a cancer specialist through their fellowship and into practice.
That point was underscored in Daugherty's report. Ninety-seven percent of oncologists say they felt that communications should be part of a medical school's curriculum, but 67 percent said that they had not been trained in discussing terminal illnesses with patients.
Times are changing, though.
"In general, when I sit down and talk to a patient I let them know if the disease process is curable or not," says Dr. Murphy. "And I make sure they understand curable." Patients who are dying, she says, should be told that they "need to make decisions about what they want to do with the rest of their lives." And in most cases, when doctors give them the chance they'll say, "I want to know because I want to be the decision maker."
That isn't always the case, though, and physicians need to tailor their conversations for each individual patient. An elderly person with Alzheimer's may not want to know how long he has to live, says Dr. Murphy. But a 43-year-old with three children needs -- and typically wants -- to make plans for the future.
"I generally don't try to hit them over the head with time if they're not ready for it," adds Dr. Murphy. "Eventually, most people will want to know, but a few don't."
John Carroll is editor of FierceBiotech.
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