The variations in symptom clusters related to well-being in palliative care patients during the final weeks of life

Abstract

19612 Background: The purpose of this study was to determine whether the relationships between symptoms and well-being, as experienced by palliative care patients, changed as patients approached death. Methods: Data were extracted from a database that included Edmonton Symptom Assessment System scores collected from palliative care patients on Day 7 of Weeks 5 (n=123), 2 (n=115), and 1 (n=113) prior to death between 1995 and 2000. The model contained 18 effect parameters. Based on standard sample size requirements for structural equation modeling of 10 cases per indicator variable, the study was adequately powered for all three time points. The majority of patients had advanced cancer and were receiving care in either a tertiary palliative care or hospice setting. All participants had Folstein Mini- Mental Status Examination scores of 22 or higher at the time of original data collection. A causal model, based primarily on clinical discussions, linking pain, anxiety, nausea, shortness of breath, drowsiness, loss of appetite, tiredness, depression, and well-being was proposed. The model was tested against the data from all three time points, using LISREL, version 8.7.2s. Results: The model fit the data for all time points, but was revised slightly based on the modification indices. The final Goodness of Fit Test values were χ2= 4.2 (d.f.=8, p=.84), χ2= 13.3 (d.f.=9, p=.15), and χ2= 5.5 (d.f.=9, p=.79) respectively. With respect to tiredness, depression and well-being, the model explained at least 70% of the variance at Week 5, between 57% and 83% of the variance at Week 2, and 42% to 58% of the variance in Week 1. Nausea was unimportant in all of the models. The two strongest effects, persisting over all three time periods, were those linking anxiety to depression, and drowsiness to tiredness, reflecting strong stability in patient rankings even as health declined and treatment changed. Conclusions: The symptom clusters in this study changed over time, in disagreement with existing research that assumes the relationships between symptoms within symptom clusters remain stable. An improved understanding of alterations in symptom clusters may contribute to improved control of patient comfort, quality of life, and quality of death. No significant financial relationships to disclose.