A Decade of Changes in Family Caregivers’ Preferences for Life-Sustaining Treatments for Terminally Ill Cancer Patients at End of Life in the Context of a Family-Oriented Society

Abstract Context Temporal changes in different family caregiver cohorts’ preferences for life-sustaining treatments (LST) at end of life (EOL) have not been examined nor has the concept of whether caregivers’ LST preferences represent a homogeneous or heterogeneous construct. Furthermore, LST preferences are frequently assessed from multiple treatments, making clinical applications difficult/infeasible. Objectives To identify parsimonious patterns and changes in the pattern of LST preferences for two independent cohorts of family caregivers for terminally ill Taiwanese cancer patients. Methods Preferences for cardio-pulmonary resuscitation, intensive care unit care, cardiac massage, intubation with mechanical ventilation, intravenous nutritional support, tube feeding, and dialysis were assessed among 1617 and 2056 family caregivers in 2003-2004 and 2011-2012, respectively. Patterns and changes in LST preferences were examined by multi-group latent class analysis. Results Five distinct classes were identified: uniformly preferring, uniformly rejecting, uniformly uncertain, and favoring nutritional support but rejecting or uncertain about other treatments. Class probability significantly decreased from 29.3% to 23.7% for the uniformly rejecting class, remained largely unchanged for the uniformly preferring (16.9-18.6%), and favoring nutritional support but rejecting (37.1-37.5%) or uncertain about other treatments (8.0%-10.4%) classes, but significantly increased from 7.0% to 11.5% for the uniformly uncertain class over time. Conclusion Family caregivers’ LST preferences for terminally ill cancer patients are a heterogeneous construct and shifted from uniformly rejecting all LSTs toward greater uncertainty. Surrogate EOL-care decision-making may be facilitated by earlier and thorough assessments of caregivers’ LST preferences and tailoring interventions to the unique needs of caregivers in each class identified in this study.