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.

CONTEXT: Temporal changes in different family caregiver cohorts' preferences for life-sustaining treatments (LSTs) at end of life (EOL) have not been examined nor have 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 cardiopulmonary 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 multigroup 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.

Longitudinal changes and predictors of caregiving burden while providing end-of-life care for terminally ill cancer patients.

BACKGROUND: The effect of caring for a dying cancer patient on caregiving burden has been explored primarily in Western-based studies with small samples or in studies that did not follow up until the patient's death, but has not yet been investigated in Taiwan. OBJECTIVE: The study's goals were (1) to identify the trajectory of caregiving burden for family caregivers (FCs) of terminally ill cancer patients in Taiwan, and (2) to investigate the determinants of caregiving burden in a large sample and with longitudinal follow-ups, until the patient's death. METHOD: A prospective, longitudinal study was conducted among 193 FCs. The trajectory and determinants of caregiving burden were identified by a generalized estimation equation approach. RESULTS: Caregiving burden did not change as the patient's death approached. FCs experienced heavy caregiving burden when their relative suffered from greater symptom distress or if they were spousal caregivers; provided high intensity of assistance to the patient while spending fewer hours providing care; reported financial insufficiency; or had lower social support, fewer psychological resources, or less confidence in caregiving. CONCLUSIONS: Taiwanese family caregivers' carry moderate caregiving burden which did not change significantly as the patients' death approached. The effects of caregiving burden while providing EOL care to terminally ill cancer patients may be tempered substantially by enhancing family caregivers caregiving confidence, social support, and psychological resources.

Mediating effects of sense of coherence on family caregivers' depressive distress while caring for terminally ill cancer patients.

BACKGROUND: The stress and coping theory suggests that the impact of caregiving on caregivers' life depends more on personal psychological resources (ie, sense of coherence [SOC]) than on objective caregiving demands or social resources. However, SOC's mediation roles in helping caregivers cope with the challenges of end-of-life care have never been explored. OBJECTIVE: The objective of this study was to evaluate the mediation effects of SOC on caregivers' depressive distress while providing end-of-life care. METHODS: The Center for Epidemiological Studies-Depression Scale scores from a convenience sample of 621 family caregivers were analyzed using structural equation modeling. We used the Sobel test to verify the significance of SOC's mediation effects on the relationships between identified stressors (objective caregiving demands, patient symptom distress), appraisals (confidence in caregiving, subjective caregiving burden), and caregivers' depressive distress. RESULTS: Sense of coherence mediated effects on relationships between Center for Epidemiological Studies-Depression Scale scores and subjective caregiving burden (P = .000), confidence in caregiving (P = .014), and objective caregiving demands (P = .000). Although the strength of SOC did not attenuate the impact of caregivers' perceived patient symptom distress on caregiver depressive distress, SOC mediated this effect secondarily through appraisals of subjective caregiving burden and confidence in caregiving. CONCLUSION: Personal psychological resources, as indicated by the strength of personal SOC, significantly mediated the effects of caregiving stressors, appraisals of caregiving confidence, and subjective caregiving burden on depressive distress of family caregivers while providing end-of-life care. IMPLICATIONS FOR PRACTICE: Nursing interventions to enhance caregivers' SOC may decrease their depressive distress through increasing their confidence in providing end-of-life care and lightening their perceived caregiving burden.