More Patients Would Refuse Treatment if They Knew the Outcome Would Mean Greatly Impaired Quality of Life

More patients would refuse life-sustaining treatment if they knew the outcome would be a life of severe functional or cognitive impairment, according to a study by a Yale researcher published Thursday in the New England Journal of Medicine.

“A central component of quality end of life care is honoring patients’ preferences,” said Terri Fried, M.D., associate professor of internal medicine and geriatrics at Yale School of Medicine and lead author of the article. “If patients preferences are to be honored, they must be well understood. The results of this study suggest that this understanding depends upon an assessment of patients’ valuations of treatment burdens in relationship to the likelihood of different potential treatment outcomes. Outcomes of functional and cognitive impairment are particularly important to patients’ preferences, and require explicit consideration in advance care planning.”

Studies examining the outcome of mortality demonstrate that its likelihood also affects preferences, but other outcomes have not been similarly examined. The objective of the current study was to examine the effect of treatment burden, a variety of treatment outcomes, and the likelihood of those outcomes on older seriously ill patients’ preferences for care.

The study included 226 persons 60 years of age or older with a limited life expectancy because of cancer, congestive heart failure, or chronic obstructive pulmonary disease. The participants were asked if they would want to receive a given treatment, first when the outcome was known with certainty, and then with different likely outcomes. The outcome without treatment was specified as dying of the underlying disease.

When the participants were told they could expect low burden treatment with a return to current health, 98.7 percent chose to receive treatment rather than die without it. When the treatment was changed to high burden, 11.2 percent of the 223 participants who chose treatment in the first instance no longer chose treatment. When the outcome was changed to severe functional or cognitive impairment, 74.4 percent and 88.8 percent, respectively, no longer chose treatment.

“Low burden” was described as a few days to one week in the hospital with minor tests such as x-rays and blood draws and therapies such as intravenous antibiotics and oxygen. The high-burden approach was described as at least one month of hospitalization with many minor tests, more complex tests, and major therapies such as being in the intensive care unit, receiving surgery or requiring mechanical ventilation.

Severe functional impairment was defined as being bedbound, unable to get to the bathroom independently, and requiring help with all daily activities. Severe cognitive impairment was described as not being aware of what is going on around you and not being able to recognize loved ones.

When the outcome was death, the number of participants who opted for treatment began to decrease only when the likelihood of dying increased from 50 percent to 90 percent. In contrast, when the adverse outcome was functional or cognitive impairment, the number began to decrease when the likelihood of impairment increased from 10 percent to 50 percent.

Fried said the study highlights limitations in current procedures designed to elicit patient preferences about treatment. Currently patient preferences are usually stated in advance directive documents available at most hospitals in which patients are asked whether they wish to receive an array of interventions.

Several investigators have pointed out the limitations in this system because the desirability of an intervention depends heavily upon its outcome.

“Intubation to treat a curable pneumonia is fundamentally different, for example, from intubation to treat respiratory failure in a seriously ill patient with lung cancer,” Fried said. “It has therefore been suggested that the elicitation of preferences be based not on specific treatments, but rather on their outcomes.”

Co-authors included Elizabeth Bradley, assistant professor in the Department of Epidemiology and Public Health, Virginia Towle and Heather Towle.