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When doctors overestimate survival times, dying patients lose choice and fulfillment of plans

reported by J. STRAX

"Doctors who do not realize how little time is left may miss the chance to devote more of it to improving the quality of patients' remaining life." Nicholas A Christakis and Elizabeth B Lamont

Doctors who refer terminally ill patients to hospice care are consistently overoptimistic, according to a study by University of Chicago researchers published in the February 19, 2000, issue of the British Medical Journal. Physicians, on average, 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 prognostic inaccuracy may lead to unsatisfactory end-of-life care. Patients are left to make decisions about their medical care, family concerns and money matters based on inaccurate information. Referral to hospice or other forms of palliative care is likely to be delayed. According to the doctors, delay results in drawn-out emphasis on aggressive but futile medical treatment, not enough pain control, unnecessary expense and less patient and family satisfaction.

Achieving a good death, one that is consistent with the patient's wishes, requires some advance warning and that is just not happening," said Nicholas Christakis, M.D., Ph.D., associate professor in the departments of medicine and sociology at the University of Chicago and director of the study.

Physicians are 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 Elizabeth Lamont, M.D., 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 heard about the arrival of a new patient, the researchers contacted the referring doctor by means of a quick phone call, and got the physician's best guess as to how long that patient would live.

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

With an accurate prediction defined as anywhere between one-third less to one-third more 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 that their patients would live more than twice as long as they really did.

Taking all the patients in the group studied, actual survival after entering hospice averaged only 24 days. Half of prostate cancer patients lived less than 43 days and half lived longer. The ideal time for entering hospice, the researchers say, is about three months before death.

The researchers found few clues about which doctors are good at judging when someone is ready to enter hospice. Surgeons did a bit better than doctors in general practice, who did slightly better than cancer specialists, who did better than other specialists. But neither career qualifications such as board certification, nor personality traits such as optimism, nor more experience in treating patients near the end of life separated those who were accurate from the Pollyannas or the pessimists.

Surprisingly, the better the physician knew the patient, the more likely he or she was to err. "Physicians," explains Christakis, "do not want to believe that a patient they know well is going to do poorly."

The fact that the errors were consistent, tending toward rampant optimism, suggests that some improvements may not be that difficult. Disinterested doctors, with less contact with the patient and less personal involvement may provide more accurate prognoses and could be called in to give second opinions.

But the real problem lies deeper than that, says Christakis, who recently published a book about the importance of accurate predictions (Death Foretold: Prophesy and Prognosis in Medical Care). "Prognosis is an essential part of medicine," he says.

How long have I got, doc?" is not an unusual question from a patient. Oncologists face that question 100 times a year. "But in patient care, clinical research and medical education," noted Christakis, "prognosis is not merely neglected, it is deliberately avoided."

The topic is rarely stressed in medical training. Physicians are often 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," Christakis says, "patients might benefit more from having their doctors focus on the hope for a good death."

Despite contact with the medical profession for months, he said, patients and their families complain of not being told about appropriate end-of-life arrangements. They often have dying experiences that are, "to put it mildly, suboptimal 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. Death is a normal and unavoidable life passage, notes Christakis. Physicians strive to delay it, but "we need to stop confusing the drive to avert death clinically with the desire to avoid it rhetorically."

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.
This page made February 19, 200. Links last updated May 1, 2009.

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Sources and Related Links

BMJ 2000;320:469-473 ( 19 February; full, free text published May, 2000 Western Journal of Medicine at Pub Med Central) Extent and determinants of error in doctors' prognoses in terminally ill patients: prospective cohort study Nicholas A Christakis, associate professor, a Elizabeth B. Lamont, fellow.

The New England Journal of Medicine -- July 18, 1996 -- Vol. 335, No. 3 Survival of Medicare Patients after Enrollment in Hospice Programs Nicholas A. Christakis, Jose J. Escarce.

Nicholas Christakis, M.D. Ph.D. is now Professor of Medical Sociology, Department of Health Care Policy, Harvard Medical School. In a presentation a presentation before the US Senate on Aging, he said:

"Health care decisions at the end of life are made at a time when patients are at their most vulnerable. In general, patients get only one chance to elect hospice care, and if the care is inadequate for any reason, it is unlikely they will have an opportunity to switch or improve on their choice. For these reasons, parties who contribute to the hospice enrollment process should act with the greatest probity. Since patients in general are enrolling in hospice late in the course of their illness, thought might be given to addressing some of the barriers to more timely referral. The apparent role of certain social and provider and market factors in the timing of hospice enrollment suggests that it is not merely the patient's clinical status, but other factors as well, that influence this important end-of-life transition in care. This in turn suggests that it may be possible to change the way hospice is used for the better of both dying patients and our society as a whole."

Hospice and End of Life Care (Links and Resources)

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