Does the public feel prepared to be substitute decision-makers? Gaps in preparedness and support for a high school curriculum: a national survey.

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.

Remember that patient you saw last week: characteristics and frequency of patients experiencing anticipated and unanticipated death following ED discharge.

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.

RéSUMé: CONTEXTE: Le service des urgences (SU) est un secteur à risque pour les erreurs médicales. Nous avons déterminé les caractéristiques des patients dont le décès a été anticipé ou non dans les 7 jours suivant la sortie des urgences et si une erreur médicale y a contribué. MéTHODES: Nous avons réalisé une étude monocentrique des dossiers médicaux de 200 cas consécutifs sur une période de trois ans, de 2014 à 2017, dans deux urgences urbaines, universitaires et de soins tertiaires. Nous avons inclus les patients évalués par un médecin urgentiste qui sont sortis de l'hôpital et sont décédés dans les 7 jours. Trois examinateurs formés et en aveugle ont déterminé si les décès étaient liés à la visite de référence, anticipés ou non, et/ou dus à une erreur médicale potentielle. Les examinateurs ont effectué une analyse de contenu pour identifier les thèmes. RéSULTATS: Sur 200 cas, 129 disposaient d'informations suffisantes pour l'analyse, ce qui correspond à 44 décès pour 100 000 sorties des urgences (200/458 634). 13 cas pour 100 000 sorties des urgences (58/458 634) étaient des décès liés et imprévus. 4 cas pour 100 000 étaient dus à des erreurs médicales potentielles (18/458 634). Plus de la moitié (52,7%) des 129 patients présentaient des signes vitaux anormaux à la sortie de l'hôpital. La pneumonie (27,1%) était la cause de décès la plus fréquente. Les thèmes des patients étaient les suivants: patient difficile, plaintes multiples, comorbidités multiples, progression aiguë d'une maladie chronique et chutes récurrentes. Les thèmes abordés par les prestataires étaient les suivants: omission de tenir compte de l'étiologie infectieuse, omission d'admettre un patient âgé à haut risque et omission de diagnostic. Les thèmes du système étaient les suivants: visites multiples à l'urgence ou admission récente, et aucun signe vital répété n'a été enregistré. CONCLUSION: Bien que la fréquence des décès liés et imprévus et ceux dus à une erreur médicale soit faible, les cliniciens doivent examiner attentivement les thèmes communs mis en évidence pour les patients, les prestataires et les systèmes afin de faciliter une sortie en toute sécurité des urgences.

Gaps in public preparedness to be a substitute decision-maker and the acceptability of high school education on resuscitation and end-of-life care: a mixed-methods study.

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 decision-maker, 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: he 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.