Development of a bilingual interdisciplinary scale assessing self-efficacy for participating in Medical Assistance in Dying.

Medical Assistance in Dying (MAiD) is a complex process involving the person seeking care and their relatives. MAiD involves physical, psychosocial and spiritual needs, and consequently the involvement of an interdisciplinary team is beneficial. Therefore, updating the knowledge and skills of healthcare and social services professionals is critical. An interdisciplinary team from Laval University (Quebec, Canada) has developed a continuous training program for all health care and social services professionals who could be involved in the care of persons who request MAiD and their loved ones. It is crucial to assess whether the objectives of the continuous training program are being met, especially since this new training addresses several complex issues (legal, ethical, and clinical). Bandura's self-efficacy theory has been widely used to develop scales for assessing the impact of training programs and identifying knowledge gaps. Bandura's theory states that feeling secure in one's self-efficacy leads to self-determined motivation. Although there are various scales intended to measure self-efficacy in palliative care, none include self-efficacy for participating in the process surrounding MAiD. As a result, we aim to create a bilingual (English-French) interdisciplinary scale to assess self-efficacy for participating in the process surrounding MAiD. The scale will allow decision-makers and researchers to identify current knowledge gaps. It will also be useful for assessing the impact of current and future training programs addressing this end-of-life practice. In this work in progress, we briefly introduce the training program and the future steps in the development and validation of the scale.

L'aide médicale à mourir (AMM) est un processus complexe impliquant la personne qui demande le soin et ses proches. L'AMM implique des besoins physiques, psychosociaux et spirituels. Par conséquent, l'implication d'une équipe interdisciplinaire est bénéfique et la mise à niveau des connaissances et des compétences des professionnel.es est essentielle. Une équipe interdisciplinaire de l'Université Laval (Québec, Canada) a développé un programme de formation continue destiné aux professionnelles de la santé et des services sociaux susceptible d'être impliqué es dans ls soins et services des personnes qui demandent l'AMM et de leurs proches. Il est crucial d'évaluer si les objectifs du programme de formation continue sont atteints, d'autant plus que cette nouvelle formation aborde plusieurs questions complexes (juridiques, éthiques et cliniques). La théorie du sentiment d'auto-efficacité de Bandura a été largement utilisée pour développer des échelles permettant d'évaluer l'impact des programmes de formation et d'identifier les lacunes en matière de connaissances. Cette théorie stipule que le fait de se sentir sûre de son efficacité personnelle conduit à une motivation intrinsèque à accomplir le comportement visé. Bien qu'il existe plusieurs échelles destinées à mesurer l'auto-efficacité dans le domaine des soins palliatifs, aucune n'inclut l'auto-efficacité pour la participation au processus entourant l'AMM. Par conséquent, nous développons une échelle interdisciplinaire bilingue (anglais-français) pour évaluer l'auto-efficacité à participer au processus entourant l'AMM. L'échelle permettra aux décideuses, décideurs et aux chercheuses et chercheurs d'identifier les lacunes actuelles en matière de connaissances. Elle sera également utile pour évaluer l'impact des programmes de formation actuels et futurs portant sur cette pratique de fin de vie. Dans cet article, nous présentons brièvement le programme de formation et les étapes futures du développement et de la validation de l'échelle.

How Engaged in Legal Planning for Incapacity and Death Are Canadians? A Mixed-Methods Survey.

Background: This study aimed to measure the level of involvement of Canadians in preparing for incapacity and death and to explore facilitators and barriers. Method: The authors used an online survey based on the social cognitive theory and the Stages of Change model. Result: One-hundred and forty-eight participants took part. The main facilitators were avoiding burdening others and reducing conflicts. Some respondents thought legal planning did not apply to young and healthy people. Some did not trust lawyers. Conclusion: The authors suggest that more people would trust lawyers if they knew the limits of legal documents and if they worked with medical experts.

A Quality Assessment of Goals of Care Forms in a Sample of Older Patients in Various Care Settings in Quebec, Canada.

OBJECTIVE:  The objective of this study is to assess the completion and content of the Goals of Care (GOC) forms in three care settings in the province of Quebec, Canada. METHODS: This is a retrospective, cross-sectional, mixed methods analysis of data extracted from the charts and GOC forms of patients aged over 65 who received services during the year 2018 in one of the three following care settings: (i) long-term care facility, (ii) acute care hospital, and (iii) home support services of a regional healthcare and social services center. The completion of the GOC form includes six essential sections. If one or more of the sections were not fulfilled, we considered the form incomplete. We used descriptive analysis to look at the information in the six sections and a thematic analysis to assess the information in an open-ended section. RESULTS: We audited 589 charts, of which 67% contained a GOC form and only 96 (16%) a completed one. The most popular goal of care was ensuring comfort as a priority over prolonging life, selected on 40% of the forms. The majority of the included patients (89%) did not want cardiopulmonary resuscitation (CPR) to be attempted in the case of cardiac arrest. There was no indication of the use of advance medical directives, and scarce indication of the use of former GOC forms (18%) and living wills (2%) in completing the forms. Comments were included in 65% of the open-ended sections. The most frequent themes related to the use or non-use of interventions and to potential transfers to the hospital or to an intensive care unit. We found that the open-ended section was used on 24 forms to specify a different goal of care applicable in the event of further health deterioration. DISCUSSION AND CONCLUSIONS: A significant proportion of charts (84%) did not contain a completed GOC form; key aspects of advance care planning were rarely considered in establishing the patient's goal of care, and the form itself lacked utility given the frequency and nature of qualitative comments. As a final product of serious illness communication and decision-making, our findings suggest that there are significant quality issues, that patients are at risk of intensification of care at the end of life, and that more needs to be done to improve serious illness decision-making and documentation.

Evaluation of a French adaptation of a community-based advance serious illness planning decision aid.

Objective: The Plan Well Guide™ (PWG) is a decision aid that empowers lay persons to better understand different types of care and prepares them, and their substitute decision-makers, to express both their authentic values and informed treatment preferences in anticipation of serious illness. We aimed to determine the acceptability of the newly translated French PWG and to evaluate decisional readiness and decisional conflict following its use by lay people. Methods: This is an acceptability and exploratory outcomes evaluation.Participants were requested to read and complete the French PWG and to engage in an online interview. We used the Acceptability Scale to determine the acceptability and the Preparation for Decision-making Scale and decisional conflict Scale to evaluate decisional readiness. Results: Forty-two (42) people participated. The average score on the Acceptability Scale was 18.1 (scale range: 4-20 [high-better]) and 26.6 on the Preparation for Decision-Making Scale (scale range: 6-30 [high-better]). A significant number of respondents reported needing more support to help them make better decisions. Conclusion: The French PWG has been deemed acceptable and relevant for lay people not currently facing clinical decisions. Innovation: The Plan Well Guide is innovative as it is the first decision aid empowering lay people for advance serious illness planning.

Cultural adaptation of a community-based advance serious illness planning decision aid to the Quebec context involving end-users.

INTRODUCTION: Traditional advance care planning focuses on end-of-life planning in the context of a certain or imminent death. It is not tailored for serious illness planning, where the 'death' outcome is uncertain. The Plan Well Guide™ (PWG) is a decision aid that empowers lay persons to better understand different types of care and prepares them, and their substitute decision-makers, to express both their authentic values and informed treatment preferences in anticipation of serious illness. A cultural adaptation was necessary to make the material suitable to the context of Quebec, a French-speaking Canadian province. METHODS: We engaged lay collaborators and experts in a panel, involving three phases of consultation and data collection. These included an online questionnaire, focused interviews and virtual focus groups that identified elements within the francophone PWG affecting its feasibility, adaptation and integration, as well as items that should be modified. RESULTS: We engaged 22 collaborators between April and September 2021. The majority (82%) ranked the first translation as good or very good; most (70%) stated that they would recommend the final adaptation. Both lay and expert panel members suggested simplifying the language and framing the tool better within the context of other advance medical planning processes in Quebec. Translation was considered in a cultural context; the challenges identified by the research team or by collaborators were addressed during the focus group. Examples of wording that required discussion include translating 'getting the medical care that's right for you' when referring to the PWG's goal. An equivalent expression in the French translation was believed to invoke religious associations. Using the term 'machines' to describe life-sustaining treatments was also deliberated. CONCLUSION: Our collaborative iterative adaptation process led to the first French advanced serious illness planning tool. How acceptable and user-friendly this French adaptation of the PWG is in various Canadian French-speaking environments requires further study. CONTRIBUTION: We organized a focus group inviting both lay collaborators and experts to contribute to the interpretation of the results of the previous phases. This choice allowed us to add more value to our results and to the final PWG in French.

Development of a decision aid for cardiopulmonary resuscitation and invasive mechanical ventilation in the intensive care unit employing user-centered design and a wiki platform for rapid prototyping.

BACKGROUND: Upon admission to an intensive care unit (ICU), all patients should discuss their goals of care and express their wishes concerning life-sustaining interventions (e.g., cardiopulmonary resuscitation (CPR)). Without such discussions, interventions that prolong life at the cost of decreasing its quality may be used without appropriate guidance from patients. OBJECTIVES: To adapt an existing decision aid about CPR to create a wiki-based decision aid individually adapted to each patient's risk factors; and to document the use of a wiki platform for this purpose. METHODS: We conducted three weeks of ethnographic observation in our ICU to observe intensivists and patients discussing goals of care and to identify their needs regarding decision making. We interviewed intensivists individually. Then we conducted three rounds of rapid prototyping involving 15 patients and 11 health professionals. We recorded and analyzed all discussions, interviews and comments, and collected sociodemographic data. Using a wiki, a website that allows multiple users to contribute or edit content, we adapted the decision aid accordingly and added the Good Outcome Following Attempted Resuscitation (GO-FAR) prediction rule calculator. RESULTS: We added discussion of invasive mechanical ventilation. The final decision aid comprises values clarification, risks and benefits of CPR and invasive mechanical ventilation, statistics about CPR, and a synthesis section. We added the GO-FAR prediction calculator as an online adjunct to the decision aid. Although three rounds of rapid prototyping simplified the information in the decision aid, 60% (n = 3/5) of the patients involved in the last cycle still did not understand its purpose. CONCLUSIONS: Wikis and user-centered design can be used to adapt decision aids to users' needs and local contexts. Our wiki platform allows other centers to adapt our tools, reducing duplication and accelerating scale-up. Physicians need training in shared decision making skills about goals of care and in using the decision aid. A video version of the decision aid could clarify its purpose.

Collaborative writing applications in healthcare: effects on professional practice and healthcare outcomes.

BACKGROUND: Collaborative writing applications (CWAs), such as wikis and Google Documents, hold the potential to improve the use of evidence in both public health and healthcare. Although a growing body of literature indicates that CWAs could have positive effects on healthcare, such as improved collaboration, behavioural change, learning, knowledge management, and adaptation of knowledge to local context, this has never been assessed systematically. Moreover, several questions regarding safety, reliability, and legal aspects exist. OBJECTIVES: The objectives of this review were to (1) assess the effects of the use of CWAs on process (including the behaviour of healthcare professionals) and patient outcomes, (2) critically appraise and summarise current evidence on the use of resources, costs, and cost-effectiveness associated with CWAs to improve professional practices and patient outcomes, and (3) explore the effects of different CWA features (e.g. open versus closed) and different implementation factors (e.g. the presence of a moderator) on process and patient outcomes. SEARCH METHODS: We searched CENTRAL, MEDLINE, Embase, and 11 other electronic databases. We searched the grey literature, two trial registries, CWA websites, individual journals, and conference proceedings. We also contacted authors and experts in the field. We did not apply date or language limits. We searched for published literature to August 2016, and grey literature to September 2015. SELECTION CRITERIA: We included randomised controlled trials (RCTs), non-randomised controlled trials (NRCTs), controlled before-and-after (CBA) studies, interrupted time series (ITS) studies, and repeated measures studies (RMS), in which CWAs were used as an intervention to improve the process of care, patient outcomes, or healthcare costs. DATA COLLECTION AND ANALYSIS: Teams of two review authors independently assessed the eligibility of studies. Disagreements were resolved by discussion, and when consensus was not reached, a third review author was consulted. MAIN RESULTS: We screened 11,993 studies identified from the electronic database searches and 346 studies from grey literature sources. We analysed the full text of 99 studies. None of the studies met the eligibility criteria; two potentially relevant studies are ongoing. AUTHORS' CONCLUSIONS: While there is a high number of published studies about CWAs, indicating that this is an active field of research, additional studies using rigorous experimental designs are needed to assess their impact and cost-effectiveness on process and patient outcomes.

Development of a Decision Aid for Cardiopulmonary Resuscitation Involving Intensive Care Unit Patients' and Health Professionals' Participation Using User-Centered Design and a Wiki Platform for Rapid Prototyping: A Research Protocol.

BACKGROUND: Cardiopulmonary resuscitation (CPR) is an intervention used in cases of cardiac arrest to revive patients whose heart has stopped. Because cardiac arrest can have potentially devastating outcomes such as severe neurological deficits even if CPR is performed, patients must be involved in determining in advance if they want CPR in the case of an unexpected arrest. Shared decision making (SDM) facilitates discussions about goals of care regarding CPR in intensive care units (ICUs). Patient decision aids (DAs) are proven to support the implementation of SDM. Many patient DAs about CPR exist, but they are not universally implemented in ICUs in part due to lack of context and cultural adaptation. Adaptation to local context is an important phase of implementing any type of knowledge tool such as patient DAs. User-centered design supported by a wiki platform to perform rapid prototyping has previously been successful in creating knowledge tools adapted to the needs of patients and health professionals (eg, asthma action plans). This project aims to explore how user-centered design and a wiki platform can support the adaptation of an existing DA for CPR to the local context. OBJECTIVE: The primary objective is to use an existing DA about CPR to create a wiki-based DA that is adapted to the context of a single ICU and tailorable to individual patient's risk factors while employing user-centered design. The secondary objective is to document the use of a wiki platform for the adaptation of patient DAs. METHODS: This study will be conducted in a mixed surgical and medical ICU at Hôtel-Dieu de Lévis, Quebec, Canada. We plan to involve all 5 intensivists and recruit at least 20 alert and oriented patients admitted to the ICU and their family members if available. In the first phase of this study, we will observe 3 weeks of daily interactions between patients, families, intensivists, and other allied health professionals. We will specifically observe 5 dyads of attending intensivists and alert and oriented patients discussing goals of care concerning CPR to understand how a patient DA could support this decision. We will also conduct individual interviews with the 5 intensivists to identify their needs concerning the implementation of a DA. In the second phase of the study, we will build a first prototype based on the needs identified in Phase I. We will start by translating an existing DA entitled "Cardiopulmonary resuscitation: a decision aid for patients and their families." We will then adapt this tool to the needs we identified in Phase I and archive this first prototype in a wiki. Building on the wiki's programming architecture, we intend to integrate the Good Outcome Following Attempted Resuscitation risk calculator into our DA to determine personal risks and benefits of CPR for each patient. We will then present the first prototype to 5 new patient-intensivist dyads. Feedback about content and visual presentation will be collected from the intensivists through short interviews while longer interviews will be conducted with patients and their family members to inform the visual design and content of the next prototype. After each rapid prototyping cycle, 2 researchers will perform qualitative content analysis of data collected through interviews and direct observations. We will attempt to solve all content and visual design issues identified before moving to the next round of prototyping. In all, we will conduct 3 prototyping cycles with a total of 15 patient-intensivist dyads. RESULTS: We expect to develop a multimedia wiki-based DA to support goals of care discussions about CPR adapted to the local needs of patients, their family members, and intensivists and tailorable to individual patient risk factors. The final version of the DA as well as the development process will be housed in an open-access wiki and free to be adapted and used in other contexts. CONCLUSIONS: This study will shed new light on the development of DAs adapted to local context and tailorable to individual patient risk factors employing user-centered design and a wiki to support rapid prototyping of content and visual design issues.

Implementation and Evaluation of a Wiki Involving Multiple Stakeholders Including Patients in the Promotion of Best Practices in Trauma Care: The WikiTrauma Interrupted Time Series Protocol.

BACKGROUND: Trauma is the most common cause of mortality among people between the ages of 1 and 45 years, costing Canadians 19.8 billion dollars a year (2004 data), yet half of all patients with major traumatic injuries do not receive evidence-based care, and significant regional variation in the quality of care across Canada exists. Accordingly, our goal is to lead a research project in which stakeholders themselves will adapt evidence-based trauma care knowledge tools to their own varied institutional contexts and cultures. We will do this by developing and assessing the combined impact of WikiTrauma, a free collaborative database of clinical decision support tools, and Wiki101, a training course teaching participants how to use WikiTrauma. WikiTrauma has the potential to ensure that all stakeholders (eg, patients, clinicians, and decision makers) can all contribute to, and benefit from, evidence-based clinical knowledge about trauma care that is tailored to their own needs and clinical setting. OBJECTIVE: Our main objective will be to study the combined effect of WikiTrauma and Wiki101 on the quality of care in four trauma centers in Quebec. METHODS: First, we will pilot-test the wiki with potential users to create a version ready to test in practice. A rapid, iterative prototyping process with 15 health professionals from nonparticipating centers will allow us to identify and resolve usability issues prior to finalizing the definitive version for the interrupted time series. Second, we will conduct an interrupted time series to measure the impact of our combined intervention on the quality of care in four trauma centers that will be selected-one level I, one level II, and two level III centers. Participants will be health care professionals working in the selected trauma centers. Also, five patient representatives will be recruited to participate in the creation of knowledge tools destined for their use (eg, handouts). All participants will be invited to complete the Wiki101 training and then use, and contribute to, WikiTrauma for 12 months. The primary outcome will be the change over time of a validated, composite, performance indicator score based on 15 process performance indicators found in the Quebec Trauma Registry. RESULTS: This project was funded in November 2014 by the Canadian Medical Protective Association. We expect to start this trial in early 2015 and preliminary results should be available in June 2016. Two trauma centers have already agreed to participate and two more will be recruited in the next months. CONCLUSIONS: We expect that this study will add important and unique evidence about the effectiveness, safety, and cost savings of using collaborative platforms to adapt knowledge implementation tools across jurisdictions.