Caregiver evaluation of the quality of end-of-life care (CEQUEL) scale: the caregiver's perception of patient care near death.

Abstract

End-of-life (EOL) measures are limited in capturing caregiver assessment of the quality of EOL care. Because none include caregiver perception of patient suffering or prolongation of death, we sought to develop and validate the Caregiver Evaluation of Quality of End-of-Life Care (CEQUEL) scale to include these dimensions of caregiver-perceived quality of EOL care. Data were derived from Coping with Cancer (CwC), a multisite, prospective, longitudinal study of advanced cancer patients and their caregivers (N = 275 dyads). Caregivers were assessed before and after patient deaths. CEQUEL's factor structure was examined; reliability was evaluated using Cronbach's α, and convergent validity by the strength of associations between CEQUEL scores and key EOL outcomes. FACTOR ANALYSIS REVEALED FOUR DISTINCT FACTORS: Prolongation of Death, Perceived Suffering, Shared Decision-Making, and Preparation for the Death. Each item loaded strongly on only a single factor. The 13-item CEQUEL and its subscales showed moderate to acceptable Cronbach's α (range: 0.52-0.78). 53% of caregivers reported patients suffering more than expected. Higher CEQUEL scores were positively associated with therapeutic alliance (ρ = .13; p≤.05) and hospice enrollment (z = -2.09; p≤.05), and negatively associated with bereaved caregiver regret (ρ = -.36, p≤.001) and a diagnosis of Posttraumatic Stress Disorder (z = -2.06; p≤.05). CEQUEL is a brief, valid measure of quality of EOL care from the caregiver's perspective. It is the first scale to include perceived suffering and prolongation of death. If validated in future work, it may prove a useful quality indicator for the delivery of EOL care and a risk indicator for poor bereavement adjustment.