Abstract
PurposeEnd-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.Patients and MethodsData 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.ResultsFactor 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).ConclusionCEQUEL 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.
Highlights
Cancer caregivers are key stakeholders in active cancer care, and in terminal care and bereavement
Higher CEQUEL scores were positively associated with therapeutic alliance (r = .13; p#.05) and hospice enrollment (z = 22.09; p#.05), and negatively associated with bereaved caregiver regret (r = 2.36, p#.001) and a diagnosis of Posttraumatic Stress Disorder (z = 22.06; p#.05)
Caregivers ranged in age from 20 to 83 years (Mean = 51.9, Median = 53). 53% were the spouse or partner of the patient. 58% of caregivers in the present study were recruited from community-based sites
Summary
Cancer caregivers are key stakeholders in active cancer care, and in terminal care and bereavement. Caregivers provide an important perspective on, and reliable assessment of, the quality of end-of-life (EOL) care patients receive [1]. Many have studied what it means to have a ‘good death’ [2], the distinctions between quality of life (QOL) and quality of death [3], and how best to measure the quality of care received at the EOL [4]–[7]. How caregivers perceive a dying loved one’s care should be of concern to healthcare providers, as it is an indicator of the quality of care the team has provided and affects caregiver bereavement [21]–[33]. Existing caregiver measures typically assess caregiver burden or QOL, but not perceived quality of care to the dying patient [34]
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