Abstract
BackgroundRecently immigrated and ethnic minority patients in Ontario, Canada are more likely to receive aggressive life-prolonging treatment at the end of life in comparison to other patients. To explore this finding further, this survey-based observational study aimed to evaluate satisfaction with the quality of end-of-life care for patients from diverse ethnocultural backgrounds.MethodsThe End-of-Life Satisfaction Survey was used to measure satisfaction with the quality of inpatient end-of-life care from the perspective of next-of-kin of recently deceased patients at Sunnybrook Health Sciences Centre in Toronto, Ontario (between March 2012 to May 2019). The primary outcome was the global rating of satisfaction. Associations with patient ethnicity, patient religion, level of religiosity/spirituality, language/communication barriers, and location of death were assessed using univariable and multivariable modified Poisson regression. Secondary outcomes included differences in satisfaction and rates of dying in intensive care units (ICU) among patient population subgroups, and identification of high priority areas for quality-of-care improvement.ResultsThere were 1,543 respondents. Patient ethnicities included Caucasian (68.2%), Mediterranean (10.5%), East Asian (7.6%), South Asian (3.5%), Southeast Asian (2.1%) and Middle Eastern (2.0%); religious affiliations included Christianity (66.6%), Judaism (12.3%) and Islam (2.1%), among others. Location of death was most commonly in ICU (38.4%), hospital wards (37.0%) or long-term care (20.0%). The mean(SD) rating of satisfaction score was 8.30(2.09) of 10. After adjusting for other covariates, satisfaction with quality of end-of-life care was higher among patients dying in ICU versus other locations (relative risk [RR] 1.51, 95%CI 1.05-2.19, p=0.028), lower among those who experienced language/communication barriers (RR 0.49 95%CI 0.23-1.06, p=0.069), and lower for Muslim patients versus other religious affiliations (RR 0.46, 95%CI 0.21-1.02, p=0.056). Survey items identified as highest priority areas for quality-of-care improvement included communication and information giving; illness management; and healthcare provider characteristics such as emotional support, doctor availability and time spent with patient/family.ConclusionSatisfaction with quality-of-care at the end of life was higher among patients dying in ICU and lower among Muslim patients or when there were communication barriers between families and healthcare providers. These findings highlight the importance of measuring and improving end-of-life care across the ethnocultural spectrum.
Highlights
Immigrated and ethnic minority patients in Ontario, Canada are more likely to receive aggressive life-prolonging treatment at the end of life in comparison to other patients
It is not clear whether the observed variation in healthcare at end of life according to race/ethnicity or immigration status is attributable to individual or ethnocultural preferences for end-of-life care [4, 5, 8]; or, whether this is a result of specific disparities in the quality of care – such as communication barriers – that may occur along the end-of-life trajectory [9, 10]
We found that family members of Muslim patients in this study were less satisfied with the quality of inpatient endof-life care in comparison to patients from other religious backgrounds
Summary
Immigrated and ethnic minority patients in Ontario, Canada are more likely to receive aggressive life-prolonging treatment at the end of life in comparison to other patients. Among decedents in Ontario, recently immigrated and ethnic minority patients were significantly more likely to die in the ICU and more likely to receive aggressive life-prolonging treatment in the last six months of life in comparison to other patients [6] It is not clear whether the observed variation in healthcare at end of life according to race/ethnicity or immigration status is attributable to individual or ethnocultural preferences for end-of-life care [4, 5, 8]; or, whether this is a result of specific disparities in the quality of care – such as communication barriers – that may occur along the end-of-life trajectory [9, 10]. Prior studies have identified priorities for improving the quality of care for patients with serious illness, such as avoiding unwanted use of life-prolonging treatment, effective communication with the healthcare team, and having trust and confidence in clinicians providing care [12,13,14,15,16]; these studies represented mostly Caucasian patients or reported on experiences within the US healthcare system
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