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.
| Original language | English |
|---|---|
| Pages (from-to) | 35-45.e4 |
| Journal | Journal of Pain and Symptom Management |
| Volume | 54 |
| Issue number | 1 |
| DOIs | |
| Publication status | Published - Jul 1 2017 |
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Keywords
- Agreement
- cancer
- end-of-life care
- life-sustaining treatments
- oncology
- preferences
- surrogate decision-making
ASJC Scopus subject areas
- Nursing(all)
- Clinical Neurology
- Anesthesiology and Pain Medicine
Cite this
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. / Liu, Tsang Wu; Wen, Fur Hsing; Wang, Cheng Hsu; Hong, Ruey Long; Chow, Jyh Ming; Chen, Jen Shi; Chiu, Chang Fang; Tang, Siew Tzuh.
In: Journal of Pain and Symptom Management, Vol. 54, No. 1, 01.07.2017, p. 35-45.e4.Research output: Contribution to journal › Article
}
TY - JOUR
T1 - 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
T2 - Results From Two Independent Cross-Sectional Studies
AU - Liu, Tsang Wu
AU - Wen, Fur Hsing
AU - Wang, Cheng Hsu
AU - Hong, Ruey Long
AU - Chow, Jyh Ming
AU - Chen, Jen Shi
AU - Chiu, Chang Fang
AU - Tang, Siew Tzuh
PY - 2017/7/1
Y1 - 2017/7/1
N2 - 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.
AB - 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.
KW - Agreement
KW - cancer
KW - end-of-life care
KW - life-sustaining treatments
KW - oncology
KW - preferences
KW - surrogate decision-making
UR - http://www.scopus.com/inward/record.url?scp=85019923832&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85019923832&partnerID=8YFLogxK
U2 - 10.1016/j.jpainsymman.2017.02.013
DO - 10.1016/j.jpainsymman.2017.02.013
M3 - Article
VL - 54
SP - 35-45.e4
JO - Journal of Pain and Symptom Management
JF - Journal of Pain and Symptom Management
SN - 0885-3924
IS - 1
ER -