Can Family Caregivers of Terminally Ill Patients Be a Reliable Source of Information About the Severity of Patient Symptoms?

Abstract

This study examines the reliability of family caregivers' assessments of a terminally ill patient's symptoms and identifies patient and caregiver characteristics that affect the reliability of caregiver reports. It compares the reports of 143 patients in home hospice units with those of their family caregiver about patient symptoms during the 3 days preceding the interview (Edmonton scale). Correlation coefficients between the patients' and proxies' reports were 0.5 to 0.8, indicating moderate-to-high agreement. Characteristics that had an independent effect on identical reporting were the patient being fully disabled, the care-giver being a woman in good health, the caregiver living with the patient, and the caregiver providing assistance with activities of daily living and medical care. These results suggest that primary caregivers can be a good source of information about a patient's symptoms, although their reports should be used with caution.