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Straight Talk From Docs on Grim Prognoses Works Best

Knowing the facts helps, even when outlook is poor, new research shows

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HealthDay Reporter

THURSDAY, July 12, 2007 (HealthDay News) -- Perhaps the only phrase tougher to hear than, "It's cancer" are the words, "There is no cure."

And those to whom the words are spoken might not even hear or understand them, new research reveals.

But if the terminal patient is a child, a second study shows, parents would feel better when doctors offer the full truth on what lies ahead.

Successfully imparting bad news about survival isn't always easy, as these research papers from the recent American Society of Clinical Oncology annual meeting in Chicago prove.

In audiotaped interviews involving individuals newly diagnosed with terminal lung or gastrointestinal cancers, 74 percent of doctors at Boston's Brigham & Women's Hospital let patients know that their illness had no cure.

However, only 32 percent of those patients later told researchers that they had heard and understood this important fact in their meeting with the doctor.

"Clearly, what's happening is that patients aren't understanding it, and the interesting question is why?" said lead researcher Dr. Lisa Lehmann, director of the hospital's Center for Bioethics.

In the study, Lehmann's group audiotaped conversations between 90 newly diagnosed patients with terminal cancer and their doctors.

They found that "[most] doctors are actually being very honest and open about patients' prognoses, at least with respect to the curability of these diseases," she said.

But almost a third of patients failed, in follow-up interviews with the researchers, to recall that the doctor had explicitly told them their illness had no cure.

Lehmann said the tapes showed that the words doctors used were simple and straightforward, so language wasn't the problem. "Whether they are traumatized by the information that's being communicated in terms of a very poor life expectancy, we just don't know," she added.

The study did uncover one possible clue: Patients who told the researchers that prognostic information was "very important" to them were more likely to remember being told bad news.

To Lehmann, that suggests that those patients understood how vital this information is for the tough health-care decisions that lie ahead. They are therefore better able to "latch onto" prognostic data when they hear it, she said.

She did call the findings troubling, however, because they suggest that many cancer patients are making treatment choices without fully understanding their prognosis.

"Patients have to realize that, despite the shock and trauma of this kind of information, it is really important information to hear," Lehmann said.

Just how important was underscored by the second research paper.

Dr. Jennifer Mack, a pediatric oncologist at the Dana Farber Cancer Institute in Boston, and her team surveyed 194 parents of children with cancer. All of the children were within a year of their diagnosis and still undergoing treatment.

The questionnaires asked parents about the type of information they hoped to receive from their child's doctors, and the extent to which they had gained hope from the information they had already received. Patients were also asked about their personal belief about their child's chance of a cure.

Mack's team found that, "even if the child's prognosis was poor, parents were more likely to derive hope if they also receive more extensive prognostic information," compared to when doctors purposely withheld information to keep hope alive.

That finding held true even when the prognostic outlook was grim and pointed to little or no likelihood of a cure.

"It really shows the power of information to be helpful to people in this kind of situation," said Mack.

According to Mack, the days when cancer doctors would hide the worst news from patients are gone -- but not quite forgotten.

"There's still that tendency to withhold information or give overly optimistic information about prognosis," according to Mack, who is also a pediatrics instructor at Harvard Medical School.

"I think that comes out of compassion," she added. "I think it may be the wrong instinct, though. Because, ultimately, it's not good for the patients. Still, I've felt that instinct myself, because it feels like such a terrible thing to give somebody really bad news."

Why is more knowledge almost always better in these kinds of cases?

"I think that often people fear the worst, and when they think they are not getting direct information, those fears just continue," Mack said. "But if we can provide information that is realistic for them, then they have a way to frame their expectations in a way that's more reasonable."

Frank, sensitive and fully articulated exchanges between doctor and patient also build trust, she added.

"They know then that they have a relationship with the physician that's going to be worthy of their trust," Mack said. "Hopefully, that physician will remain with them and continue to provide realistic information along the way."

Lehmann believes the same.

Knowing whether or not you might survive, or for how long, is crucial to the choices you must make -- for example, choosing aggressive chemotherapy vs. palliative care, she said.

"However, patients can only make those decisions if they have some information on life expectancy," she added.

For patients facing what could be bad news, she advises bringing a family member or friend to the doctor.

"They can really listen in a way that the patient themselves may not be able to," she said.

And she suggested that doctors also need to "check in" with patients periodically, to make sure they have a full grasp of their illness and its prognosis.

"We also have to find some way of communicating it so that people are willing to hear it," Lehmann said.

More information

There's more on cancer patient support at the American Cancer Society.

SOURCES: Jennifer Mack, pediatric oncologist, Dana Farber Cancer Institute, and instructor, pediatrics, Harvard Medical School, Boston; Lisa Lehmann, M.D., Ph.D., director, Center for Bioethics, Brigham & Women's Hospital, Boston; June 2007 presentations, American Society of Clinical Oncologists annual meeting, Chicago

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