Evaluation of a Large Scale Advance Care Planning Co-Design Education Program for Chinese-Speaking People in Australia

Abstract

Background: Advance care planning (ACP) is important, however ethnic minorities have half the completion rates in the United States compared to Caucasian counterparts, and in Australia only 3.5% of advance directives were completed by those overseas-born.Educational intervention improves ACP knowledge and subsequent uptake. We evaluated immediate and longer-term outcomes of a co-designed ACP education toolkit in Chinese-speaking people in Victoria, Australia. Methods: We conducted a cross-sectional survey of Chinese-speaking community members who participated in a co-designed Chinese ACP educational workshop. A self-selected subgroup were subsequently contacted 6 months later to determine longer-term outcomes. Results: Of 519 attendees across 17 workshops, 325 (63%) completed the evaluation. The majority (63%;n = 206) were previously unaware of ACP. Perception of receipt of useful information positively correlated with motivation to undertake ACP ( r = 0.3486, p < 0.001). Of the 70 participants who consented to follow up, 36% (n = 26) agreed to participate in structured telephone interviews. English speakers were more likely to have undertaken ACP (n = 6 vs n = 3). ACP completion was not associated with being a carer or suffering from cancer or chronic illness. Conclusions: This first Australian study evaluating ACP co-design education implementation outcomes in Chinese-speaking people supports that motivation to undertake ACP is related to knowledge, albeit a modest ACP uptake in a small follow up sample. Clinicians should note that this assists with ACP uptake, with likely downstream improved health outcomes. This co-designed toolkit could be helpful in increasing ACP uptake. Future engagement by Chinese language societies to overcome further barriers to ACP is needed.

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

“…Most studies were conducted in the USA (n = 36) and one in Australia (n = 1). Sixteen studies were conducted in community-based settings [ 18 – 33 ], eight in out-patient clinical care units (i.e., dialysis centres, cancer clinics, HIV clinic) [ 34 – 41 ], seven in urban hospitals [ 42 – 48 ] and six in primary care settings [ 49 – 54 ]. Eleven studies focused on a multi-racial/ethnic population [ 20 , 30 , 37 , 42 , 45 – 49 , 51 , 53 ]; 10 on patients of Latino descent [ 23 , 26 , 27 , 34 , 36 , 39 , 44 , 50 , 52 , 54 ] and African American descent [ 18 , 19 , 21 , 24 , 32 , 35 , 38 , 40 , 41 , 43 ]; two on patients of Chinese American descent [ 22 , 25 ]; and one on patients of Chinese Australian [ 33 ], Korean American [ 28 ], South Asian Indian American [ 29 ] and Asian American descent [ 31 ].…”

“…[ 21 , 22 , 24 , 26 – 29 , 31 , 32 , 35 , 38 , 40 , 41 , 45 , 46 ]; healthcare provider-led interventions (i.e., palliative care consults, patient navigators, lay health workers, etc.) [ 34 , 37 , 42 – 44 , 47 – 49 ]; educational tools (i.e., videos, booklets) [ 18 – 20 , 25 , 33 , 53 , 54 ]; paper-based and electronic decision aids [ 30 , 50 – 52 ]; and communication strategies [ 23 , 36 , 39 ]. Twenty-seven tools were aimed at supporting patients [ 7 , 21 , 23 – 27 , 29 , 31 – 34 , 36 – 39 , 42 – 48 , 50 – 53 ]; five at supporting family members [ 18 – 20 , 28 , 30 ]; four at supporting both patients and families [ 35 , 40 , 41...…”

“…Among these, two studies met 80% of MMAT quality criteria (received 4 out of 5 stars) [ 21 , 32 ], one study met 60% of MMAT quality criteria (received 3 out of 5 stars) [ 24 ], and one study met 40% of MMAT quality criteria (received 2 out of 5 stars) [ 26 ]. The two studies that employed cross-sectional research designs were rated to have moderate quality ratings (scored 4 to 7 out of a total 11 points) [ 33 , 36 ]. The quality assessments for eligible studies can be found in S3 Appendix .…”

“…Proportion of patients with documented goals of care or ACP discussions , advance directives , or advance care plans . Three studies (overall moderate quality evidence—one cluster RCT with some concerns with risk of bias [ 18 ], one pre-post study rated moderate quality [ 20 ], and one cross-sectional study rated moderate quality [ 33 ]) reported that there were no significant changes in advance directive completion rates among racial/ethnic minority patients who participated in an educational intervention or used educational booklets.…”

Advance Care Planning Among Elderly Acquired Immunodeficiency Syndrome Patients

“…[11][12][13] Advance care planning also facilitates doctor-patient communication, reduces clinical decision-making conflicts, and enhances the expression of end-of-life wishes. 14 Generally, ACP is more prevalent in developed countries, such as North America, Australia, and New Zealand, [15][16][17][18] and more widely accepted in the medical field, particularly in hospitals, communities, and nursing homes. 11,15,19 In addition to elderly patients, the ACP population comprises parents/guardians of minors with lifethreatening illnesses, with the community being extended to patients with malignant tumors, Alzheimer disease, cardiovascular, and other diseases.…”