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

• Published in: Journal of pain and symptom management Vol. 51; no. 1; pp. 9 - 16
• Main Authors: Lee, Janet J., MD, Long, Ann C., MD, MS, Curtis, J. Randall, MD, MPH, Engelberg, Ruth A., PhD
• Format: Journal Article
• Language: English
• Published: United States Elsevier Inc 01.01.2016
• Subjects: Aged; Anesthesia & Perioperative Care; Death; Education; Educational Status; end-of-life care; Family - psychology; Female; health-care disparities; Healthcare Disparities - ethnology; Humans; Intensive Care Units; Male; Middle Aged; Minority Groups - psychology; Models, Psychological; Pain Medicine; palliative care; Palliative Care - psychology; race/ethnicity; Regression Analysis; Self Report; United States > US; health-care disparities; Education; palliative care; end-of-life care; race/ethnicity
• ISSN: 0885-3924; 1873-6513
• DOI: 10.1016/j.jpainsymman.2015.08.008

Abstract Context Racial and ethnic differences in end-of-life care may be attributable to both patient preferences and health-care 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 intensive care units 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.