When it comes to defining outcomes, caregivers and patients don’t always agree

Physicians often turn to a patient’s friends or family members to make a decision on medical treatment. But a Yale study has found that seriously ill elder patients and caregivers disagreed approximately 40 percent of the time over the acceptability of outcomes such as memory loss, physical impairment and chronic pain.

According to Terri R. Fried, M.D., lead author of a paper published in the Archives of Internal Medicine in September, this is “the first study that asked how acceptable different states of health would be as a result of treatment.” Fried, an associate professor of internal medicine (geriatrics) at the School of Medicine, said caregivers may not be representing patients’ desires.

Although approximately 60 percent of patient-caregiver pairs agreed on the acceptability of severe memory loss as an outcome, about 40 percent could not agree. An outcome of chronic pain generated 35 percent disagreement, and being bed-bound evoked 43 percent disagreement. Without treatment, patients faced further decline and death. The 193 patients in the study were over age 60 and seriously ill with cancer, congestive heart failure or chronic lung disease.

According to Fried, patients and their caregivers are often in denial about the illness and try to spare each other’s feelings. The failure to discuss difficult possibilities leaves caregivers ill-prepared to make treatment decisions for seriously ill patients.

Physicians must educate the patient about the course of the illness and the decisions that need to be made, Fried said. “Most patients do have strong views about the quality of life,” she said. “We need to translate that into choices that are useful in medical decision making, and that’s what we tried to do in the study.”