The effect of end-of-life decision-making tools on patient and family-related outcomes of care among ethnocultural minorities: A systematic review.

BACKGROUND: End-of-life decision-making tools are used to establish a shared understanding among patients, families and healthcare providers about medical treatment and goals of care. This systematic review aimed to understand the availability and effect of end-of-life decision-making tools on: (i) goals of care and advance care planning; (ii) patient and/or family satisfaction and well-being; and (iii) healthcare utilization among racial/ethnic, cultural, and religious minorities. METHODS: A search was conducted in four electronic databases (inception to June 2021). Articles were screened for eligibility using pre-specified criteria. We focused on adult patients (aged ≥18 years) and included primary research articles that used quantitative, qualitative, and mixed-methods designs. Complementary quality assessment tools were used to generate quality scores for individual studies. Extracted data were synthesized by outcome measure for each type of tool, and an overall description of findings showed the range of effects. RESULTS: Among 14,316 retrieved articles, 37 articles were eligible. We found that advance care planning programs (eleven studies), healthcare provider-led interventions (four studies), and linguistically-tailored decision aids (three studies) increased the proportion of patients documenting advance care plans. Educational tools (three studies) strongly reduced patient preferences for life-prolonging care. Palliative care consultations (three studies) were strongly associated with do-not-resuscitate orders. Advance care planning programs (three studies) significantly influenced the quality of patient-clinician communication and healthcare provider-led interventions (two studies) significantly influenced perceived patient quality of life. CONCLUSION: This review identified several end-of-life decision-making tools with impact on patient and family-related outcomes of care among ethnocultural minorities. Advance care planning programs, healthcare provider-led interventions and decision aids increased documentation of end-of-life care plans and do-not-resuscitate orders, and educational tools reduced preferences for life-prolonging care. Further research is needed to investigate the effect of tools on healthcare utilization, and with specific patient population subgroups across different illness trajectories and healthcare settings.

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

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.

Association between Chinese or South Asian ethnicity and end-of-life care in Ontario, Canada.

BACKGROUND: Ethnicity may be associated with important aspects of end-of-life care, such as what treatments are received, access to palliative care and where people die. However, most studies have focused on end-of-life care of white, Hispanic and black patients. We sought to compare end-of-life care delivered to people of Chinese and South Asian ethnicity with that delivered to others from the general population, in Ontario, Canada. METHODS: In this population-based cohort study, we included all people who died in Ontario, Canada, between Apr. 1, 2004, and Mar. 31, 2015. People were identified as having Chinese or South Asian ethnicity on the basis of a validated surname algorithm. We used modified Poisson regression analyses to assess location of death and care received in the last 6 months of life. RESULTS: We analyzed 967 339 decedents, including 18 959 (2.0%) of Chinese and 11 406 (1.2%) of South Asian ethnicity. Chinese (13.6%) and South Asian (18.5%) decedents were more likely than decedents from the general population (10.1%) to die in the intensive care unit (ICU). The adjusted relative risk of dying in intensive care was 1.21 (95% confidence interval [CI] 1.15 to 1.27) for Chinese and 1.25 (95% CI 1.20 to 1.30) for South Asian decedents. In their last 6 months of life, decedents of Chinese and South Asian ethnicity experienced significantly more ICU admission, hospital admission, mechanical ventilation, dialysis, percutaneous feeding tube placement, tracheostomy and cardiopulmonary resuscitation than the general population. INTERPRETATION: Decedents of Chinese and South Asian ethnicity in Ontario were more likely than decedents from the general population to receive aggressive care and to die in an ICU. These findings may be due to communication difficulties between patients and clinicians, differences in preferences about end-of-life care or differences in access to palliative care services.

Advance Care Planning for Mechanical Ventilation: A Qualitative Study on Health-Care Providers' Approaches to Cross-Cultural Care.

Advance care planning (ACP) is a method used for patients to express in advance their preferences for life-sustaining treatments at the end of life. With growing ethnocultural diversity in Canada, health-care providers are managing an increasing number of diverse beliefs and values that are commonly associated with preferences for intensive mechanical ventilation (MV) treatment at the end of life. This study aimed to identify and describe the approaches used by health-care providers to set advance care plans for MV with seriously ill patients from diverse ethnocultural backgrounds. Semistructured interviews were conducted with health-care providers from acute-care settings. Using a value-based approach in ACP was deemed an effective method of practice for managing and interpreting diverse beliefs and values that impact decisions for MV. However, personnel, organizational, and systemic barriers that exist continue to hinder the provision of ACP across cultures.