Background Substitute decision-makers (SDMs) make decisions on behalf of patients who do not have capacity, in line with previously expressed wishes, values and beliefs. However, miscommunications and poor awareness of previous wishes often lead to inappropriate care. Increasing public preparedness to communicate on behalf of loved ones may improve care in patients requiring an SDM. Methods We conducted an online survey in January 2019 with a representative sample of the Canadian population. The primary outcome was self-reported preparedness to be an SDM. The secondary outcome was support for a high school curriculum on the role of SDMs. The effect of socio-demographics, known enablers and barriers to acting as an SDM, and attitudes towards a high school curriculum were assessed using multivariate analysis. Results Of 1,000 participants, 53.1% felt prepared to be an SDM, and 75.4% stated they understood their loved one’s values. However, only 55.6% reported having had a meaningful conversation with their loved one about values and wishes, and only 61.7% reported understanding the SDM role. Engagement in advance care planning for oneself was low (23.1%). Age, experience, training and comfort with communication were associated with preparedness in our multivariate analysis. A high school curriculum was supported by 61.1% of respondents, with 28.3% neutral and 10.6% against it. Interpretation There is a gap between perceived and actual preparedness to be an SDM. Many report understanding their loved one’s values yet have not asked them about wishes in illness or end of life. The majority of respondents support high school education to improve preparedness.
Introduction: When a patient is incapable of making medical decisions for themselves, choices are made according to the patient's previously expressed, wishes, values, and beliefs by a substitute decision maker (SDM). While interventions to engage patients in their own advance care planning exist, little is known about public readiness to act as a SDM on behalf of a loved one. This mixed-methods survey aimed to describe attitudes, enablers and barriers to preparedness to act as a SDM, and support for a population-level curriculum on the role of an SDM in end-of-life and resuscitative care. Methods: From November 2017 to June 2018, a mixed-methods street intercept survey was conducted in Ottawa, Canada. Descriptive statistics and logistic regression analysis were used to assess predictors of preparedness to be a SDM and understand support for a high school curriculum. Responses to open-ended questions were analyzed using inductive thematic analysis. Results: The 430 respondents were mostly female (56.5%) with an average age of 33.9. Although 73.0% of respondents felt prepared to be a SDM, 41.0% of those who reported preparedness never had a meaningful conversation with loved ones about their wishes in critical illness. The only predictors of SDM preparedness were the belief that one would be a future SDM (OR 2.36 95% CI 1.34-4.17), and age 50-64 compared to age 16-17 (OR 7.46 95% CI 1.25-44.51). Thematic enablers of preparedness included an understanding of a patient's wishes, the role of the SDM and strong familial relationships. Barriers included cultural norms, family conflict, and a need for time for high stakes decisions. Most respondents (71.9%) believed that 16 year olds should learn about SDMs. They noted age appropriateness, potential developmental and societal benefit, and improved decision making, while cautioning the need for a nuanced approach respectful of different maturity levels, cultures and individual experiences. Conclusion: This study reveals a concerning gap between perceived preparedness and actions taken in preparation to be an SDM for loved ones suffering critical illness. The results also highlight the potential role for high school education to address this gap. Future studies should further explore the themes identified to inform development of resources and curricula for improved health literacy in resuscitation and end-of-life care.
Background The emergency department (ED) is an at-risk area for medical error. We determined the characteristics of patients with unanticipated and anticipated death within 7 days of ED discharge and whether medical error contributed. Methods We performed a single-centre health records review of 200 consecutive cases during a 3-year period from 2014 to 2017 in two urban, academic, tertiary care EDs. We included patients evaluated by an emergency physician who were discharged and died within 7 days. Three trained and blinded reviewers determined if deaths were related to the index visit, anticipated or unanticipated, and/or due to potential medical error. Reviewers performed content analysis to identify themes. Results Of 200 cases, 129 had sufficient information for analysis, translating to 44 deaths per 100,000 ED discharges (200/458,634). 13 cases per 100,000 ED discharges (58/458,634) were related and unanticipated deaths. 4 cases per 100,000 were due to potential medical errors (18/458,634). Over half (52.7%) of 129 patients displayed abnormal vital signs at discharge. Pneumonia (27.1%) was the most common cause of death. Patient themes were: difficult historian, multiple complaints, multiple comorbidities, acute progression of chronic disease, and recurrent falls. Provider themes were: failure to consider infectious etiology, failure to admit high-risk elderly patient, and missed diagnosis. System themes were: multiple ED visits or recent admission, and no repeat vital signs recorded. Conclusion Though the frequency of related and unanticipated deaths and those due to medical error was low, clinicians should carefully consider the highlighted common patient, provider, and system themes to facilitate safe discharge from the ED.
Background: When a patient is incapable of making medical decisions for him-or herself, a substitute decision-maker makes choices according to the patient's previously expressed wishes, values and beliefs; however, little is known about public readiness to act as a substitute decision-maker in Canada. Our primary objective was to measure public self-reported preparedness to act as a substitute decision-maker, and explore the attitudes, barriers and enablers associated with preparedness. Methods: From November 2017 to June 2018, we conducted a mixed-methods street intercept survey at 12 pedestrian areas in Ottawa, Ontario. We used descriptive statistics and logistic regression analysis to assess predictors of perceived preparedness to be a substitute decision-maker and determine support for high school education. We analyzed qualitative interview questions using inductive thematic analysis. Results: Of the 626 eligible respondents, 196 refused to participate, leaving 430 participants (response rate 68.7%). A total of 404 surveys (94.0%) were fully complete with no missing data. The respondents were mostly female (243 [56.5%]) and residents of Ontario (364 [84.6%]). The average age was 33.9 years. Although 314 respondents (73.0%) felt prepared to be a substitute decisionmaker, 194 (45.1%) reported never having had meaningful conversations with loved ones to understand their wishes in the event of critical illness. A total of 293 participants (68.1%) identified important barriers to feeling prepared. Most respondents (309 [71.9%]) agreed that high school students should learn about being a substitute decision-maker, citing age appropriateness, potential societal benefit and improved decision-making, while cautioning the need to respect different maturity levels, cultures and experiences. Interpretation: The lack of conversation between loved ones reveals a gap between perceived and actual preparedness to be a substitute decision-maker for a loved one with a critical illness. The overall acceptability of high school education warrants further exploration.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.
hi@scite.ai
10624 S. Eastern Ave., Ste. A-614
Henderson, NV 89052, USA
Copyright © 2024 scite LLC. All rights reserved.
Made with 💙 for researchers
Part of the Research Solutions Family.