Evaluating satisfaction with the quality and provision of end-of-life care for patients from diverse ethnocultural backgrounds

Ayah Nayfeh; Christopher J Yarnell; Craig Dale; Lesley Gotlib Conn; Brigette Hales; Tracey Das Gupta; Anita Chakraborty; Ruxandra Pinto; Ru Taggar; Robert Fowler

doi:10.1186/s12904-021-00841-z

Evaluating satisfaction with the quality and provision of end-of-life care for patients from diverse ethnocultural backgrounds

BMC Palliat Care. 2021 Sep 17;20(1):145. doi: 10.1186/s12904-021-00841-z.

Authors

Ayah Nayfeh¹, Christopher J Yarnell^{2

3

4}, Craig Dale^{5

6}, Lesley Gotlib Conn^{2

5}, Brigette Hales⁷, Tracey Das Gupta⁷, Anita Chakraborty⁷, Ruxandra Pinto⁷, Ru Taggar⁷, Robert Fowler^{3

7

8}

Affiliations

¹ Institute of Health Policy, Management and Evaluation, Dalla Lana School of Public Health, University of Toronto, 155 College Street, Room 500, Toronto, Ontario, M5T 3M7, Canada. ayah.nayfeh@mail.utoronto.ca.
² Institute of Health Policy, Management and Evaluation, Dalla Lana School of Public Health, University of Toronto, 155 College Street, Room 500, Toronto, Ontario, M5T 3M7, Canada.
³ Interdepartmental Division of Critical Care Medicine, University of Toronto, Toronto, ON, Canada.
⁴ Sinai, Health Systems, Toronto, ON, Canada.
⁵ Sunnybrook Research Institute, Toronto, ON, Canada.
⁶ Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Toronto, ON, Canada.
⁷ Sunnybrook Health Sciences Centre, Toronto, ON, Canada.
⁸ H. Barrie Fairley Professorship of Critical Care at the University Health Network, Toronto, ON, Canada.

Abstract

Background: Recently 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.

Methods: The 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.

Results: There 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.

Conclusion: Satisfaction 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.

Keywords: Culture; End-of-Life Care; Quality of Care; Race/Ethnicity; Satisfaction.

Publication types

Observational Study

MeSH terms

Ethnicity
Humans
Islam
Minority Groups
Ontario
Patient Satisfaction
Personal Satisfaction*
Terminal Care*