The Influence of Race/Ethnicity and Education on Family Ratings of the Quality of Dying in the ICU

Abstract

Context Racial and ethnic differences in end-of-life care may be attributable to both patient preferences and healthcare disparities. Identifying factors that differentiate preferences from disparities may enhance end-of-life care for critically ill patients and their families. Objectives To understand the association of minority race/ethnicity and education with family ratings of the quality of dying and death, taking into consideration possible markers of patient and family preferences for end-of-life care as mediators of this association. Methods Data were obtained from 15 ICUs participating in a cluster-randomized trial of a palliative care intervention. Family members of decedents completed self-report surveys evaluating quality of dying. We used regression analyses to identify associations between race/ethnicity, education and quality of dying ratings. We then used path analyses to investigate whether advance directives and life-sustaining treatment acted as mediators between patient characteristics and ratings of quality of dying. Results Family members returned 1290 surveys for 2850 decedents. Patient and family minority race/ethnicity were both associated with lower ratings of quality of dying. Presence of a living will and dying in the setting of full support mediated the relationship between patient race and family ratings; patient race exerted an indirect, rather than direct, effect on quality of dying. Family minority race had a direct effect on lower ratings of quality of dying. Neither patient nor family education was associated with quality of dying. Conclusion Minority race/ethnicity was associated with lower family ratings of quality of dying. This association was mediated by factors that may be markers of patient and family preferences (living will, death in the setting of full support); family member minority race/ethnicity was directly associated with lower ratings of quality of dying. Our findings generate hypothesized pathways that require future evaluation.

Culture and Palliative Care: Preferences, Communication, Meaning, and Mutual Decision Making

“…34 Overall, disparities in care mean that people of color, of diverse sexual orientation and disabled, are less likely to receive care that aligns with their wishes than dominant cultural whites, 35 and they report lower levels of satisfaction with end-of-life care. 36 The provision of culturally informed and responsive care may ultimately change how diverse groups see end-of-life care options. 37 Notably, in addition to providing palliative care for patients and families that is sensitive, acceptable, and effective for diverse populations, a focus on culture is beneficial to health systems.…”

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.…”

“…66,67 There was insufficient scientific inference that patients’/family members’ socioeconomic backgrounds and religious beliefs might predict the family ratings of EOLC. 68,70,77 Aggressiveness of treatments at the end of life was associated with cancer and heart failure. 70,80 This may indicate that the patients with certain types of diagnoses were resistant to EOLC.…”

Race and Ethnicity and Satisfaction With Communication in the Intensive Care Unit

“…1 Compared with whites, minority patients receive more intensive care and are less likely to use hospice at EoL, 2 5 and their family members are more likely to report poor-quality EoL care. 6 8 Receipt of intensive care rather than comfort care and poor communication with clinicians is associated with decisional regret among bereaved minority family members. 9…”