Doctors overestimate survival times for the terminally ill

Doctors who refer terminally ill patients to hospice care are systematically overoptimistic, according to a study by University researchers published in the Feb. 19 issue of the British Medical Journal. On average, physicians predicted that their dying patients would live 5.3 times longer than they actually did. In only 20 percent of cases were the doctors’ predictions accurate.

Such prognoses may result in unsatisfactory end-of-life care, leaving patients to make clinical, social and financial decisions based on inaccurate information. For example, referral to hospice or other forms of palliative care is delayed, resulting in prolonged emphasis on aggressive but futile medical treatment, insufficient pain control, unnecessary expense and decreased patient and family satisfaction.

“Achieving a good death, one that is consistent with a patient’s wishes, requires some advance warning, and that is just not happening,” said Dr. Nicholas Christakis, Associate Professor in Medicine and Sociology at the University and director of the study.

“Physicians are superbly trained in diagnosis and treatment, but they know less about, ignore and often actively avoid prognosis. They can’t or won’t make predictions about a patient’s future, and as a result, many patients die deaths they deplore in locations they despise.”

In the first large, prospective study of this issue, Christakis and Dr. Elizabeth Lamont, a fellow in the Robert Wood Johnson Clinical Scholars Program at the University, followed the progress of every patient enrolled at five outpatient hospices in Chicago during 130 consecutive days in 1996.

As soon as they were notified about the arrival of a new patient, the researchers contacted the referring doctor to conduct a four-minute telephone survey and elicited the physician’s prognosis.

Then they followed each patient’s progress until death. They collected data regarding 343 different physicians and 468 patients who had died by June 30, 1999.

When an accurate prediction was defined as anywhere between one-third shorter to one-third longer than actual survival, 63 percent of prognoses were overestimates, 20 percent were correct and 17 percent were underestimates.

If that definition was relaxed to include any predictions ranging from one-half to two-times actual survival––for example, guessing anywhere from one week to four weeks for a patient who survived two weeks––most doctors were still overly optimistic. In 55 percent of the 468 cases, the doctors predicted their patients would live more than twice as long as they did.

Actual survival averaged only 24 days. Three months is considered ideal for hospice care.

In analyses of the referring physicians, neither board certification, self-rated optimism, number of recent hospice referrals, nor number of medically similar patients in the past year provided clues as to which doctors develop prognostic skills and which do not. Surprisingly, the better the physician knew the patient, the more likely he or she was to err. “Physicians do not want to believe that a patient they know well is going to do poorly,” said Christakis.

The fact that the errors were consistent suggests that some improvements may not be very difficult. Doctors with less contact and less personal involvement with a patient may provide more accurate prognoses and could be called in to provide predictive second opinions. But the real problem lies deeper than that, said Christakis, who recently published Death Foretold: Prophesy and Prognosis in Medical Care (University of Chicago Press, 2000), which laments physicians’ inability to provide accurate prognoses and stresses the importance of accurate predictions.

“Prognosis is an essential part of medicine,” Christakis emphasized, “in many cases just as important as diagnosis and treatment.”

It is common for terminally ill patients to ask their physicians how much longer they have to live. General practitioners are asked an average of six times a year, and oncologists face that question approximately 100 times a year. Yet textbooks rarely cover the topic; it has been the subject of less than 4 percent of published studies, and it is rarely stressed in medical training. In fact, physicians often are taught not to make predictions but to focus instead on providing hope.

Providing the right kinds of hope can be beneficial and comforting, noted Christakis, yet too much optimism near the end of life may mean patients never see the end coming, never prepare for it and fight vainly against it. “At some point,” suggested Christakis, “patients might benefit more from having their doctors focus on the hope for a good death.”

For months, terminally ill patients tend to have frequent contact with medical professionals, he said, yet patients and their families complain of being uninformed about appropriate end-of-life arrangements. They often have dying experiences that are, “to put it mildly, sub-optimal in fundamental ways,” said Christakis.

More than 80 percent of Americans die in health-care institutions rather than at home. An estimated 40 to 70 percent of dying patients unnecessarily suffer pain, 25 to 35 percent impose significant financial and personal burdens on their families, and 10 to 30 percent express preferences about the dying process that are disregarded by their health-care providers.

Much of this suffering and expense could be avoided by an honest attempt to provide each patient with an accurate prognosis, said Christakis. Death is a normal and unavoidable life passage, he noted. While physicians strive to delay death, “we need to stop confusing the drive to avert death clinically with the desire to avoid it rhetorically,” Christakis said.

Support for this study was provided by the Soros Foundation Project on Death and Dying in America, the Robert Wood Johnson Clinical Scholars Program, and the American Medical Association Education and Research Foundation.