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Who's caring for whom? Differing perspectives between seriously ill patients and their family caregivers

Chih-Hung Chang, PhD

Buehler Center on Aging, Feinberg School of Medicine, Northwestern University, Chicago, Illinois

Hillel Alpert, MS

Vital Science and Health, Newton, Massachusetts

DeWitt Baldwin, MD

Accreditation Council for Graduate Medical Education, Chicago, Illinois

Ezekiel J. Emanuel, MD, PhD

Department of Bioethics, National Institutes of Health, Bethesda, Maryland

Linda Emanuel, MD, PhD

Buehler Center of Aging, Feinberg School of Medicine, Northwestern University, Chicago, Illinois

Although clinicians and researchers often rely on family members' reports of a wide range of dying patients' symptoms and care preferences, available data indicate divergences between the two. We used a national sample to analyze patient-caregiver pairs to explore areas of concordance and nonconcordance about physical symptoms, communication with physicians, caregiving needs, andfuturefears. We also assessed whether identifiable patient or caregiver characteristics were associated with nonconcordance. Our data were from a national, random sample of 988 terminally ill patients, of whom 893 had caregivers who were also interviewed. Frequencies and types of nonconcordance were computed for patient-caregiverpairs. Bivariate associations between patient and caregiver reports on each item were tested Logistic and conditional logistic regression analyses assessed multiple predictors of nonconcordance for each item. Primary diagnoses included cancer (51.1 percent), heart disease (17. 7 percent), chronic obstructive pulmonary disease (10. 7percent), and other diseases (20.5 percent). The proportion of concordant reports among pairs ofpatients and caregivers ranged from 53 percent to 66 percent. Among pairs showing nonconcordant responses, caregivers reported higher levels of pain and disability than patients, lower caregiving needs, and different fears about thefuture. Few demographic or clinical predictors were associated with nonconcordance. Concordance between patients' and their caregivers' responses ranged widely, and there were important areas of nonconcordant responses. When responses differed, patients were more likely to express concern about domains that might impose on caregivers, while caregivers were more likely to express concern about patients' physical suffering. Consistent sociodemographic or clinical predictors of nonconcordant responses were not found These data suggest important ways that patient and caregiver reports of the samg e experience vary.

Key Words: care preferences • communication • concordance • nonconcordance

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