Is the Waiting the Hardest Part?

Abstract

Cancer caregivers are key stakeholders across the cancer trajectory, particularly in the final weeks of life and the bereavement period that follows. Current measures are limited in capturing caregiver assessment of the quality of end-of-life (EOL) care. Because none include caregiver perception of patient suffering or prolongation of death, the author sought to develop and validate a new measure of caregiver-perceived quality of EOL care that includes these dimensions. Data for this study comes from Coping with Cancer (CwC), a multisite, prospective, longitudinal study of advanced cancer patients and their caregivers (N=275 dyads). CwC investigators interviewed cancer patients and caregivers prior to the patient's death, and then caregivers again following the patient's death, on a range of psychosocial issues related to EOL care and bereavement. The present study represents a refinement of the author's previous work in developing and validating the Caregiver Evaluation of Quality of End-of-Life Care (CEQUEL) scale, a comprehensive measure of caregiver-perceived quality of EOL care. 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 author examined the new measure's factor structure, and evaluated its reliability (using Cronbach's α) and convergent validity (via associations between CEQUEL and key EOL outcomes). CEQUEL and its subscales showed moderate to acceptable Cronbach's α (range: 0.52-0.78). Higher scores (indicating better perceived quality of care) were positively associated with therapeutic alliance (ρ=.13; p≤.05) and hospice enrollment (z=-2.09; ≤;.05), and negatively associated with bereaved caregiver regret (ρ=-.36, p≤.001) and a diagnosis of Posttraumatic Stress Disorder (z=-2.06; p≤.05). Scores did not vary by caregiver characteristics other than religious affiliation, with Catholics scoring lower than non-Catholics, and those without religious affiliation scoring lower than those with an affiliation. Models predicting CEQUEL scores were compared using multiple regression analysis and AICc values. In unadjusted analyses, dying in a hospital, inpatient hospice length of stay (LOS) < 1 week, patients feeling seen as a whole person by their physician, and caregiver religiosity predicted CEQUEL scores. Only dying in a hospital (B=-1.65, SE=0.42, p=0.000) and inpatient hospice LOS < 1 week (B=-1.87, SE=-.69, p=0.008) remained significant in adjusted analysis. These findings suggest that CEQUEL is a brief, valid measure of quality of EOL care from the caregiver's perspective. This study also identifies key factors that can be modified to improve caregiver evaluation of quality of care and associated bereavement outcomes. CEQUEL is the first scale of its kind 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. Implications for research, clinical practice and policy are discussed.