Bereaved family members’ perceptions of the quality of end-of-life care across four types of inpatient care settings

Abstract

Background: The aims of this study were to gain a better understanding of how bereaved family members perceive the quality of EOL care by comparing their satisfaction with quality of end-of-life care across four different settings and by additionally examining the extent to which demographic characteristics and psychological variables (resilience, optimism, grief) explain variation in satisfaction. Methods: A cross-sectional mail-out survey was conducted of bereaved family members of patients who had died in extended care units (n = 63), intensive care units (n = 30), medical care units (n = 140) and palliative care units (n = 155). 1254 death records were screened and 712 bereaved family caregivers were identified as eligible, of which 558 (who were initially contacted by mail and then followed up by phone) agreed to receive a questionnaire and 388 returned a completed questionnaire (response rate of 70%). Measures included satisfaction with end-of-life care (CANHELP-Canadian Health Care Evaluation Project -family caregiver bereavement version; scores range from 0 = not at all satisfied to 5 = completely satisfied), grief (Texas Revised Inventory of Grief (TRIG)), optimism (Life Orientation Test -Revised) and resilience (The Resilience Scale). ANCOVA and multivariate linear regression were used to analyze the data. Results: Family members experienced significantly lower satisfaction in MCU (mean = 3.69) relative to other settings (means of 3.90 [MCU], 4.14 [ICU], and 4.00 [PCU]; F (3371) = 8.30, p = .000). Statistically significant differences were also observed for CANHELP subscales of "doctor and nurse care", "illness management", "health services" and "communication". The regression model explained 18.9% of the variance in the CANHELP total scale, and between 11.8% and 27.8% of the variance in the subscales. Explained variance in the CANHELP total score was attributable to the setting of care and psychological characteristics of family members (44%), in particular resilience. Conclusion: Findings suggest room for improvement across all settings of care, but improving quality in acute care and palliative care should be a priority. Resiliency appears to be an important psychological characteristic in influencing how family members appraise care quality and point to possible sites for targeted intervention.

Family Outcomes and Perceptions of End-of-Life Care in the Intensive Care Unit: A Mixed-Methods Review

“…The factors associated with the quality of EOLC in the ICU were found in the remaining 18 descriptive studies. 63 -80…”

“…The second finding was identification of factors (patients/family members’ characteristics and characteristics of the ICU setting) associated with families’ perceptions (see Table 4), which were identified in 18 descriptive studies with large sample sizes in multinations. 63 -80 Seven studies showed the most common factor for families’ evaluation of the quality of EOLC was the location where the patients received EOLC. 64 -67,73,75,76 The ICU is a common place of death but was not the preferred place to die for patients and family members.…”

“…63 -80 Seven studies showed the most common factor for families’ evaluation of the quality of EOLC was the location where the patients received EOLC. 64 -67,73,75,76 The ICU is a common place of death but was not the preferred place to die for patients and family members. 64,65,73,75,76 Family members in Denmark rated EOLC and pain management more highly than family members in the Netherlands; however, there were no differences in quality of EOLC between Dutch and American family members.…”

Cultural Adaptation and Validation of the Portuguese Version of the CANHELP Lite Bereavement Questionnaire

“…The quality of care provided to individuals at the end of life, and to their family members, has become an important health and social issue across the world [1]. Quality end-of-life care is considered a right for all citizens and the responsibility of every government [2].…”

“…Understanding how care is perceived by family members across care settings is essential to identify specific domains of care that need to be improved [1] and that influence how end-of-life care is delivered and experienced [6].…”