Yale Bulletin and Calendar

October 3, 2003|Volume 32, Number 5

Study: Caregivers, patients often
disagree over health decisions

Although caregivers are often called upon to make decisions on behalf of seriously ill patients, Yale researchers have found that their decisions may not accurately reflect patients' wishes.

Patients are much more concerned about treatment outcomes -- what their health will be as a result of treatment -- than they are about the details of intervention, the Yale study shows.

"On average, patients and caregivers disagreed 40% of the time about whether ability to function, mental capacity, pain and other symptoms, were acceptable following treatment," says principal investigator Dr. Terri Fried, associate professor of internal medicine/geriatrics at the School of Medicine. "Although patients are very concerned about becoming a burden on families because of functional or cognitive impairment, caregivers appear willing to tolerate these states of dependence."

Fried's study, published in the Sept. 23 Archives of Internal Medicine, notes that in cases where dying patients are unable to participate in decision making regarding their treatment, physicians often turn to a surrogate decision maker, usually a family member. Previous studies have suggested that surrogates are poor predictors of patients' preferences for certain treatments.

The researchers interviewed 193 patients aged 60 years or older and their caregivers. The patients were seriously ill with cancer, congestive heart failure or chronic obstructive pulmonary disease. Patients were asked whether, if faced with a further decline in health, they would find a series of health states (mild memory impairment, pain, coma, etc.) acceptable. A rating of "unacceptable" would indicate a wish to die rather than receive the treatment. Caregivers were asked whether they would find these states acceptable for the patient.

Patients and caregivers frequently disagreed about the states of several functional impairments, mental impairments, pain and other symptoms. Forty-three percent of patient-caregiver pairs disagreed about the acceptability of being bed-bound, 40% disagreed about the acceptability of not recognizing loved ones and 35% disagreed about the acceptability of severe pain.

"Many patients want their surrogates to have leeway when making decisions and not be bound by previously expressed wishes, but increased discussion about a patient's preferences for treatment outcomes can only improve a surrogate's understanding of the patient's hopes and fears as they face progressive serious illness," says Fried.

Other researchers on the study included Elizabeth H. Bradley of the Department of Epidemiology and Public Health and Virginia R. Towle of the Department of Internal Medicine/Geriatrics.

The study was supported by grants from Veterans Administration Health Services Research & Development (HSR&D); the National Institute on Aging; and a VA HSR&D Career Development Award and Paul Beeson Physician Faculty Scholars Award.

-- By Karen Peart

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