Terminally Ill Taiwanese Cancer Patients’ and Family Caregivers’ Agreement on Patterns of Life-Sustaining Treatment Preferences Is Poor to Fair and Declines Over a Decade: Results From Two Independent Cross-Sectional Studies
Journal
Journal of Pain and Symptom Management
Journal Volume
54
Journal Issue
1
Pages
35-450000
Date Issued
2017
Author(s)
Abstract
Context/Objective Temporal changes have not been examined in patient-caregiver agreement on life-sustaining treatment (LST) preferences at end of life (EOL). We explored the extent of and changes in patient-caregiver agreement on LST-preference patterns for two independent cohorts of Taiwanese cancer patient-family caregiver dyads recruited a decade apart. Methods We surveyed preferences for cardiopulmonary resuscitation, intensive care unit care, cardiac massage, intubation with mechanical ventilation, intravenous nutritional support, tube feeding, and dialysis among 1049 and 1901 dyads in 2003–2004 and 2011–2012, respectively. LST-preference patterns were examined by multi-group latent class analysis. Extent of patient-caregiver agreement on LST-preference patterns was determined by percentage agreement and kappa coefficients. Results For both patients and family caregivers, we identified seven distinct LST-preference classes. Patient-caregiver agreement on LST-preference patterns was poor to fair across both study cohorts, indicated by 24.4%–43.5% agreement and kappa values of 0.06 (95% CI: 0.04, 0.09) to 0.27 (0.23, 0.30), and declined significantly over time. Agreement on LST-preference patterns was most likely when both patients and caregivers uniformly rejected LSTs. When patients disagreed with caregivers on LST-preference patterns, discrepancies were most likely when patients totally rejected LSTs but caregivers uniformly preferred LSTs or preferred nutritional support but rejected other treatments. Conclusion Patients and family caregivers had poor-to-fair agreement on LST-preference patterns, and agreement declined significantly over a decade. Encouraging an open dialogue between patients and their family caregivers about desired EOL care would facilitate patient-caregiver agreement on LST-preference patterns, thus honoring terminally ill cancer patients’ wishes when they cannot make EOL-care decisions. ? 2017 American Academy of Hospice and Palliative Medicine
Subjects
Agreement; cancer; end-of-life care; life-sustaining treatments; oncology; preferences; surrogate decision-making
Other Subjects
cancer patient; caregiver; case report; cross-sectional study; decision making; dialysis; doctor patient relation; enteric feeding; family study; female; heart massage; human; intensive care unit; intubation; kappa statistics; life sustaining treatment; male; nutritional support; oncology; resuscitation; terminal care; terminally ill patient; adolescent; adult; aged; attitude to health; caregiver; cohort analysis; cross-sectional study; decision making; family; female; long term care; male; middle aged; neoplasm; proxy; psychology; Taiwan; terminal care; time factor; very elderly; young adult; Adolescent; Adult; Aged; Aged, 80 and over; Attitude to Health; Caregivers; Cohort Studies; Cross-Sectional Studies; Decision Making; Family; Female; Humans; Life Support Care; Male; Middle Aged; Neoplasms; Proxy; Taiwan; Terminal Care; Terminally Ill; Time Factors; Young Adult
Publisher
Elsevier Inc.
Type
journal article