Fur-Hsing Wen1, Wen-Chi Chou2,3, Jen-Shi Chen2,3, Wen-Cheng Chang2,3, Chia-Hsun Hsieh2,3, Siew Tzuh Tang2,4,5. 1. 1 Department of International Business, Soochow University , Taipei, Taiwan . 2. 2 Division of Hematology-Oncology, Chang Gung Memorial Hospital at Linkou , Taoyuan City, Taiwan . 3. 3 College of Medicine, Chang Gung University , Taoyuan City, Taiwan . 4. 4 School of Nursing, Chang Gung University , Taoyuan City, Taiwan . 5. 5 Department of Nursing, Chang Gung Memorial Hospital at Kaohsiung , Kaohsiung City, Taiwan .
Abstract
BACKGROUND: Patient-caregiver concordance on end-of-life (EOL) care preferences is poor, but changes in this concordance have not been longitudinally explored as patient death approaches, potentially distorting the extent of concordance. Cross-sectional studies cannot disentangle whether the extent of concordance is facilitated or hindered by dyads' specific preferences, prognostic awareness, physical and psychological well-being, and quality of life, or whether these variables were enhanced or worsened by patient-caregiver concordance on EOL care preferences. OBJECTIVE: To examine the evolution of and factors facilitating or hindering patient-caregiver concordance on life-sustaining treatment (LST) preferences over cancer patients' last six months. DESIGN: Longitudinal study design. METHODS/ SUBJECTS: Patient-caregiver concordance on LST preference states (patterns) was examined among 215 cancer patient-caregiver dyads in patients' last six months by hidden Markov modeling. Concordance on LST preference states was determined by percent agreement and kappa coefficients. Predictors of concordance on LST preference states were tested by hierarchical generalized linear modeling with logistic regression, with concordance and time-varying, modifiable independent variables arranged in a distinct time sequence. RESULTS: Patient-caregiver concordance on LST preference states was poor and improved only slightly over cancer patients' last six months. Concordance on LST preference states was significantly more likely in patients with greater physical symptom distress. Caregivers were more likely to concur with their relative's LST preference states if caregivers uniformly rejected all LSTs or accepted nutritional support while rejecting other aggressive LSTs for their relative. DISCUSSION/ CONCLUSION: Patient symptom distress and caregiver rejection of aggressive LSTs predicted greater patient-caregiver concordance on LST preference states in patients' last six months. To encourage patients and caregivers to discuss LST preferences, clinicians should facilitate caregivers' understanding of patients' LST preferences and LST efficacy at EOL and adjustment to their beloved's inevitable death when his/her physical symptoms still wax and wane, thus providing personalized and value-concordant EOL care for dying cancer patients.
BACKGROUND:Patient-caregiver concordance on end-of-life (EOL) care preferences is poor, but changes in this concordance have not been longitudinally explored as patient death approaches, potentially distorting the extent of concordance. Cross-sectional studies cannot disentangle whether the extent of concordance is facilitated or hindered by dyads' specific preferences, prognostic awareness, physical and psychological well-being, and quality of life, or whether these variables were enhanced or worsened by patient-caregiver concordance on EOL care preferences. OBJECTIVE: To examine the evolution of and factors facilitating or hindering patient-caregiver concordance on life-sustaining treatment (LST) preferences over cancerpatients' last six months. DESIGN: Longitudinal study design. METHODS/ SUBJECTS:Patient-caregiver concordance on LST preference states (patterns) was examined among 215 cancerpatient-caregiver dyads in patients' last six months by hidden Markov modeling. Concordance on LST preference states was determined by percent agreement and kappa coefficients. Predictors of concordance on LST preference states were tested by hierarchical generalized linear modeling with logistic regression, with concordance and time-varying, modifiable independent variables arranged in a distinct time sequence. RESULTS:Patient-caregiver concordance on LST preference states was poor and improved only slightly over cancerpatients' last six months. Concordance on LST preference states was significantly more likely in patients with greater physical symptom distress. Caregivers were more likely to concur with their relative's LST preference states if caregivers uniformly rejected all LSTs or accepted nutritional support while rejecting other aggressive LSTs for their relative. DISCUSSION/ CONCLUSION:Patient symptom distress and caregiver rejection of aggressive LSTs predicted greater patient-caregiver concordance on LST preference states in patients' last six months. To encourage patients and caregivers to discuss LST preferences, clinicians should facilitate caregivers' understanding of patients' LST preferences and LST efficacy at EOL and adjustment to their beloved's inevitable death when his/her physical symptoms still wax and wane, thus providing personalized and value-concordant EOL care for dying cancerpatients.
Entities:
Keywords:
end-of-life care; life-sustaining treatment preferences; longitudinal study; patient–caregiver concordance; predictors of patient–caregiver concordance; surrogate decision making
Authors: J Nicholas Dionne-Odom; Rachel D Wells; Kate Guastaferro; Andres Azuero; Bailey A Hendricks; Erin R Currie; Avery Bechthold; Chinara Dosse; Richard Taylor; Rhiannon D Reed; Erin R Harrell; Shena Gazaway; Sally Engler; Peg McKie; Grant R Williams; Rebecca Sudore; Christine Rini; Abby R Rosenberg; Marie A Bakitas Journal: J Pain Symptom Manage Date: 2021-07-31 Impact factor: 3.612