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Family members of critically ill patients want to discuss loved ones' uncertain prognoses

December 29, 2008

Critically ill patients frequently have uncertain prognoses, but their families overwhelmingly wish that physicians would address prognostic uncertainty candidly, according to a new study out of the University of San Francisco Medical Center.

"Our interviews revealed that caregivers appear to believe that some uncertainty is unavoidable, and just the nature of life," said lead author Douglas White, M.D., M.A.S., assistant professor in UCSF's Division of Pulmonary and Critical Care Medicine and the UCSF Program in Medical Ethics. "The vast majority of families of critically ill patients want physicians to openly discuss the prognosis, even when physicians can't be certain that their estimates are correct."

But past research showing that physicians are reluctant to discuss uncertain prognoses reveals a schism between families' wishes and physicians' comfort.

The results were reported in the second issue for January of the American Journal of Respiratory and Critical Care Medicine, published by the American Thoracic Society.

Between January 2006 and October 2007, researchers at the University of San Francisco Medical Center conducted face-to-face interviews with 179 surrogate decision-makers for patients in four separate intensive care units (ICUs). The interviews explored surrogates' attitudes about whether physicians should discuss prognoses when they cannot be certain their prognostic estimates are correct.

When asked whether they would prefer to hear physicians' prognoses, 87 percent of caregivers indicated that they would want to be told of all prognostic estimates, even if the estimates were tentative. Most also indicated that they appreciated a physician's candor in discussing uncertain outcomes as honest, rather than seeing it as a source of confusion or anxiety.

"We learned that family members wanted prognostic information in order to know whether they needed to begin to prepare for the chance that their loved one might die, and so begin the bereavement process," Dr. White said. "I think one of the strongest messages that comes from this study is that family members want to have this discussion with the physician, and want to have the opportunity to take care of unfinished personal and familial business before their loved one dies. They need that chance to say their goodbyes, in case the patient does die."

Dr. White also noted that while the majority of family members indicated that they did want physicians to discuss all possible outcomes, a not-insignificant portion- 12 percent- said they did not want to discuss uncertain prognoses, indicating that a "one-size-fits-all" approach is insufficient in critical care situations.

"Our findings suggest that physicians need to develop the skills to understand the unique needs of surrogates, and then tailor their approach to discussing prognosis to meet those needs," he said. "This is an area in need of well-designed quantitative and qualitative studies."

Dr. White and his colleagues are currently involved in a follow-up study to help family members navigate the process of surrogate decision making in the ICU setting.

John Heffner, M.D., past president of the ATS, emphasized that the results of this study parallel previous investigations that examined patient and family preferences in discussing do-not-resuscitate orders and end-of-life care. "In almost all studies, patients and families express a desire for clear information to inform their decisions. Although physicians often wish to shelter their patients and patient families from what might seem to be harsh realities, the human spirit is resilient. Patients and families access to information from their doctors."

American Thoracic Society