Death determination by neurologic criteria-what do families understand?

PURPOSE: Currently, there is little empirical data on family understanding about brain death and death determination. The purpose of this study was to describe family members' (FMs') understanding of brain death and the process of determining death in the context of organ donation in Canadian intensive care units (ICUs). METHODS: We conducted a qualitative study using semistructured, in-depth interviews with FMs who were asked to make an organ donation decision on behalf of adult or pediatric patients with death determination by neurologic criteria (DNC) in Canadian ICUs. RESULTS: From interviews with 179 FMs, six main themes emerged: 1) state of mind, 2) communication, 3) DNC may be counterintuitive, 4) preparation for the DNC clinical assessment, 5) DNC clinical assessment, and 6) time of death. Recommendations on how clinicians can help FMs to understand and accept DNC through communication at key moments were described including preparing FMs for death determination, allowing FMs to be present, and explaining the legal time of death, combined with multimodal strategies. For many FMs, understanding of DNC unfolded over time, facilitated with repeated encounters and explanation, rather than during a single meeting. CONCLUSION: Family members' understanding of brain death and death determination represented a journey that they reported in sequential meeting with health care providers, most notably physicians. Modifiable factors to improve communication and bereavement outcomes during DNC include attention to the state of mind of the family, pacing and repeating discussions according to families' expressed understanding, and preparing and inviting families to be present for the clinical determination including apnea testing. We have provided family-generated recommendations that are pragmatic and can be easily implemented.

RéSUMé: OBJECTIF: À l'heure actuelle, il y a peu de données empiriques sur la compréhension des familles de la mort cérébrale et de la détermination du décès. Le but de cette étude était de décrire la compréhension des membres de la famille de la mort cérébrale et du processus de détermination du décès dans le contexte du don d'organes dans les unités de soins intensifs (USI) canadiennes. MéTHODE: Nous avons mené une étude qualitative à l'aide d'entrevues semi-structurées et approfondies avec des membres de la famille à qui on a demandé de prendre une décision de don d'organes au nom de patients adultes ou pédiatriques dont le décès avait été déterminé selon des critères neurologiques (DCN) dans les unités de soins intensifs canadiennes. RéSULTATS: Sur la base d'entrevues avec 179 membres de la famille, six thèmes principaux ont émergé : 1) l'état d'esprit, 2) la communication, 3) le DCN peut être contre-intuitif, 4) la préparation à l'évaluation clinique pour un DCN, 5) l'évaluation clinique pour un DCN et 6) le moment du décès. Des recommandations sur la façon dont les cliniciens peuvent aider les membres de la famille à comprendre et à accepter un DCN par la communication à des moments clés ont été décrites, y compris la préparation des membres de la famille à la détermination du décès, l'autorisation de la présence des membres de la famille et l'explication de l'heure légale du décès, combinées à des stratégies multimodales. Pour de nombreux membres de la famille, la compréhension du DCN s'est développée au fil du temps et a été facilitée par des rencontres et des explications répétées plutôt qu'au cours d'une seule rencontre. CONCLUSION: La compréhension qu'ont les membres de la famille de la mort cérébrale et de la détermination du décès représente un parcours qu'ils ont décrit lors de rencontres successives avec des acteurs de soins de santé, et particulièrement avec des médecins. Les facteurs modifiables pour améliorer la communication et les issues du deuil pendant un DCN comprennent l'attention portée à l'état d'esprit de la famille, le rythme et la répétition des discussions en fonction de la compréhension exprimée par les familles, ainsi que la préparation et l'invitation des familles à être présentes pour la détermination clinique, y compris pendant le test d'apnée. Nous avons fourni des recommandations familiales qui sont pragmatiques et peuvent être facilement mises en œuvre.

The experiences of family members of deceased organ donors and suggestions to improve the donation process: a qualitative study.

BACKGROUND: Decisions about organ donation are stressful for family members of potential organ donors. We sought to comprehensively explore the donation process from interviews conducted with family members of patients admitted to pediatric and adult intensive care units in Canada. METHODS: We conducted a qualitative study using semistructured, in-depth interviews with 271 family members asked to make an organ donation decision. We recruited participants from all provinces with an organ donation organization (n = 10), and analyzed themes using a modified grounded theory approach. On the basis of these interviews, suggestions were made by researchers and family members on how to improve the process of organ donation. RESULTS: We identified 3 main themes and 9 subthemes. Families need more comprehensive support around the time of donation, including having access to someone with shared experiences, support during specific moments as needed and better support during critical transitions (e.g., when the donor body goes to the operating room). The theme of better connection to recipient(s) included receiving information about the donation surgery (e.g., which organs were recovered), establishing connection with recipients (e.g., via social networks or letters) and planned encounters. Support after donation, such as updates on organ transplantation, early mental health checks and continued connection to donor organizations, could be improved. We derived 20 suggestions for improving the organ donation process, derived from interviews with family members of pediatric and adult organ donors. INTERPRETATION: We found gaps in family support during end-of-life and donation care. Feelings of abandonment, lack of support and poor-to-little follow-up provide the empirical findings needed for hospitals and organ donor organizations to provide better support to donor families.

A Multicenter Qualitative Investigation of the Experiences and Perspectives of Substitute Decision Makers Who Underwent Organ Donation Decisions.

BACKGROUND: Organ donation research has centered on improving donation rates rather than focusing on the experience and impact on substitute decision makers. The purpose of this study was to document donor and nondonor family experiences, as well as lasting impacts of donation. METHODS: We used a qualitative exploratory design. Semistructured interviews of 27 next-of-kin decision makers were conducted, transcribed verbatim, and entered into qualitative software. We analyzed the process-based reflections using inductive coding and thematic analysis techniques. RESULTS: Four broad and interrelated themes emerged from the data: empathetic care, information needs, donation decision, and impact and follow-up. The donation experience left lasting impacts on family members due to lingering, unanswered questions. Suggested solutions to improve the donor experience for families included providers employing multimodal communication, ensuring a proper setting for family meetings, and the presence of a support person. DISCUSSION: We now have improved our understanding of the donation process from the perspective of and final impression from the next of kin. To our knowledge, this is the largest cohort interviewed in Canada. We have explored families' experiences, which included but did not end with donation. We learned that despite being appreciative of nurses, physicians, and organ and tissue donation coordinators, family members were often troubled by unanswered questions. CONCLUSION: This study described donor and nondonor family experiences with donation as well as lasting impacts. Addressing unanswered questions should be done in a place sufficiently remote from the donation event to enhance the family members' understanding and well-being.

An Interhospital, Interdisciplinary Needs Assessment of Palliative Care in a Community Critical Care Context.

AIM: There is a paucity of data on the provision of palliative care in the critical care settings of smaller community hospitals. This study aimed to identify the gaps that affect the provision of palliative care in a community critical care setting. SETTING: The study was set in a 10-bed, open intensive care unit and emergency department at a community hospital. METHODS: Mixed methods were used. Quantitative data included those drawn from databases and surveys; qualitative data included those collected from interviews, focus groups, and onsite walk-throughs and were analyzed with inductive coding techniques. RESULTS: Gaps were identified in palliative care, goals of care and end-of-life discussions, and resources. Community hospital healthcare professionals did not fully appreciate their essential contribution to the provision of palliative care in the intensive care unit. In addition, there was a lack of expertise, and a lack of interest in gaining expertise, in palliative/end-of-life care. CONCLUSION: Interrelated needs in a complex interprofessional, interhospital context were captured. Further studies are required to obtain data on palliative practice in the care of critically ill patients in various community hospital contexts.

Comprehensive assessment of critical care needs in a community hospital*.

OBJECTIVE: To design and implement a needs assessment process that identifies gaps in caring for critically ill patients in a community hospital. DESIGN, SETTING, SUBJECTS: This mixed-method study was conducted between June 2011 and February 2012. A conceptual framework, centered on the critically ill patient, guided the design and selection of the data collection instruments. Different perspectives sampled included regional leaders, healthcare professionals at the community hospital and its referral hospital, as well as family members of patients who had received care at the community ICU. Data sources included interviews (n = 22), walk-throughs (n = 5), focus groups (n = 31), database searches, context questionnaires (n = 8), family surveys (n = 16), and simulations (n = 13). INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Nine needs were identified. At the community hospital, needs identified included lack of access to human resources, gaps in expertise, poor patient flow and ICU bed use, communication, lack of educational opportunities, and gaps in end-of-life care and interprofessional teamwork. Needs were also identified in the interhospital interaction between the community and referral hospitals, which included an inadequate hospital network and gaps in transfer and repatriation of patients. The methodology uncovered the causes and widespread impact of each need and how they interacted with one another. Proposed solutions by the participants are presented including both organizational and educational/clinical solutions. CONCLUSIONS: This study captured needs in a complex, interprofessional, interhospital context, which can be targeted with tailored interventions to improve patient outcomes in a community hospital. Furthermore, this study provides a preliminary framework and rigorous methodology to performing a needs assessment in this setting.

The perceived contributions of non-physician team members to residents' interprofessional education during a critical care rotation.

During rotations, post-graduate medical residents must learn about interprofessional teamwork and collaboration. Our study examined the role of non-physician healthcare team members in such education, from the perspectives of both residents and team members themselves. METHODS: This qualitative study took place in the intensive care unit (ICU) of a teaching hospital in a Canadian city. We conducted semi-structured individual and focus group interviews with both residents (n = 6) and the team members with whom they collaborated: pharmacists, nurses, respiratory therapists, and a social worker (n = 19). RESULTS: We developed a number of themes about interprofessional education (IPE) in this context from the data, including the presence of planned, unplanned, and tacit teaching; the influence of contextual factors like ICU culture, work demands, resident motivation, power hierarchies, and perceptions of 'good' and 'bad' residents; the gap between team member perceptions of their contribution to residents' IP education and residents' own perceptions; and concerns about the transferability of IPE to other contexts. CONCLUSIONS: The influence of non-physician team members on residents' IPE in the clinical environment is an understudied topic. While our study was limited to one ICU, the themes that emerged may be of interest to others in similar contexts.

CONTEXTE: Au cours des stages, les résidents en médecine doivent apprendre le travail d'équipe et la collaboration interprofessionnelle (IP). Notre étude examine le rôle des membres non-médecins de l'équipe soignante dans cette formation, de leur point de vue et du point de vue des résidents. MÉTHODES: Cette étude qualitative a été réalisée dans l'unité de soins intensifs (USI) d'un hôpital universitaire dans une ville canadienne. Nous avons mené des entretiens individuels et des groupes de discussion semi-structurés avec les résidents (n = 6) et les membres de l'équipe avec lesquels ils collaboraient : des pharmaciens, des infirmières, des inhalothérapeutes et un travailleur social (n = 19). RÉSULTATS: À partir des données, nous avons dégagé un certain nombre de thèmes sur la formation interprofessionnelle (FIP) dans ce contexte, notamment la présence d'un enseignement planifié, non planifié et tacite; l'influence de facteurs contextuels tels que la culture des soins intensifs, les exigences du travail, la motivation des résidents, les hiérarchies et la perception des résidents comme étant « bons ¼ ou « mauvais ¼; le décalage entre les perceptions des membres de l'équipe quant à leur contribution à la formation interprofessionnelle des résidents et celles des résidents eux-mêmes; et les préoccupations concernant la transférabilité de la FIP dans d'autres contextes. CONCLUSIONS: L'influence des membres non-médecins de l'équipe soignante sur la FIP des résidents en milieu clinique est un sujet peu étudié. Bien que notre étude se limite à une seule unité de soins intensifs, les thèmes qui en sont ressortis pourraient être généralisés à des contextes similaires.

Evaluating the Implementation of Ontario's Organ and Tissue Donation Physician Leadership Model: Mapping a Way Forward.

BACKGROUND: The demand for solid organ transplantation has spurred countries around the world to search for innovative policies and practices to increase the supply of organs. Spain has become a global reference point for organ donation with the highest transplantation rates. In Ontario, Canada the Ontario Trillium Gift of Life (TGLN) has sought to replicate some of the successes in Spain. In particular, TGLN's implementation of the Physician Leadership Model has been viewed as a promising strategy to improve donation conversion rates. OBJECTIVE: The objective of this study was to evaluate the implementation of TGLNs (TGLN) Physician Leadership Model by examining critical implementation process variables (education/training, communication, satisfaction, participation and reach). METHODS: This mixed-method implementation evaluation included data from all members of the Physician Leadership Model including the Chief Medical Officer, five Regional Medical Leads (RMLs), and the 52 Hospital Donation Physicians (HDPs). Social Network Analysis (SNA) surveys were sent to all 52 HDPs and yielded an 85% rate. Analysis included constructing sociograms and qualitatively analyzing interviews. RESULTS: TGLN's PLM was poised for success by utilizing the existing RMLs' network as a foundation. The social network analysis measures, particularly participation and reach, indicated the PLM was quite dense (ie, the degree to which members are connected) at baseline. HDPs reported communication to be facilitated by their connections to their RMLs. Early evaluative data indicated that lack of education and training was viewed by HDPs as a barrier, and thus more capacity would need to be directed to this issue. Overall, HDPs reported that various intended outcomes were being met. CONCLUSION: We have demonstrated that an implementation evaluation helps us to understand which elements of the PLM were successful and which elements required immediate attention. This evaluation helped to highlight the successes and challenges in implementing the TGLN Physician Leadership Model in Ontario. Social network analysis of publicly funded capacity building systems has been identified as a promising area for health program evaluation to answer questions at a system level, such as identifying service provisions among information exchange networks and ultimately better health care.

Mapping the Expert Mind: Integration Method for Revising the ACES Medical Simulation Curriculum.

PURPOSE: This article shares our experience developing an integrated curriculum for the ACES (Acute Critical Event Simulation) program. The purpose of the ACES program is to ensure that health care providers develop proficiency in the early management of critically ill patients. The program includes multiple different types of educational interventions (mostly simulation-based) and targets both specialty and family physicians practicing in tertiary and community hospitals. METHODS: To facilitate integration between different educational interventions, we developed a knowledge repository consisting of cognitive sequence maps that make explicit the flow of cognitive activities carried out by experts facing different situations - the sequence maps then serving as the foundation upon which multimodal simulation scenarios would be built. To encourage participation of experts, we produced this repository as a peer-reviewed ebook. Five national organizations collaborated with the Royal College of Physicians and Surgeons of Canada to identify and recruit expert authors and reviewers. Foundational chapters, centered on goals/interventions, were first developed to comprehensively address most tasks conducted in the early management of a critically ill patient. Tasks from the foundational chapters were then used to complete the curriculum with situations. The curriculum development consisted of two-phases each followed by a peer-review process. In the first phase, focus groups using web-conferencing were conducted to map clinical practice approaches and in the second, authors completed the body of the chapter (e.g., introduction, definition, concepts, etc.) then provided a more detailed description of each task linked to supporting evidence. RESULTS: Sixty-seven authors and thirty-five peer reviewers from various backgrounds (physicians, pharmacists, nurses, respiratory therapists) were recruited. On average, there were 32 tasks and 15 situations per chapter. The average number of focus group meetings needed to develop a map (one map per chapter) was 6.7 (SD ± 3.6). We found that the method greatly facilitated integration between different chapters especially for situations which are not limited to a single goal or intervention. For example, almost half of the tasks of the Hypercapnic Ventilatory Failure chapter map were borrowed from other maps with some modifications, which significantly reduced the authors' workload and enhanced content integration. This chapter was also linked to 6 other chapters. CONCLUSIONS: To facilitate curriculum integration, we have developed a knowledge repository consisting of cognitive maps which organize time-sensitive tasks in the proper sequence; the repository serving as the foundation upon which other educational interventions are then built. While this methodology is demanding, authors welcomed the challenge given the scholarly value of their work, thus creating an interprofessional network of educators across Canada.

Patient-centred and family-centred care of critically ill patients who are potential organ donors: a qualitative study protocol of family member perspectives.

INTRODUCTION: In a patient-centred and family-centred approach to organ donation, compassion is paramount. Recent guidelines have called for more research, interventions and approaches aimed at improving and supporting the families of critically ill patients. The objective of this study is to help translate patient-centred and family-centred care into practice in deceased organ donation. METHODS AND ANALYSIS: This will be a national, qualitative study of family members of deceased organ donors in Canada. We will include family members who had been approached regarding an organ donation decision, including those who agreed and declined, at least 2 months and no later than 3 years after the patients' death. Data collection and analysis is ongoing and will continue until September 2020 to include approximately 250 participants. Family members will be identified and recruited from provincial organ donation organisation databases. Four experienced qualitative researchers will conduct telephone interviews in English or French with audio-recording for subsequent transcription. The research team will develop a codebook iteratively through this process using inductive methods, thus generating themes directly from the dataset. ETHICS AND DISSEMINATION: Local research ethics boards (REB) at all participating sites across Canada have approved this protocol. The main REB involved is the Ottawa Health Science Network REB. Data collection began in August 2018. Publication of results is anticipated in 2021. Study findings will help improve healthcare provider competency in caring for potential organ donors and their families and improve organ donation consent rates. Findings will also help with the development of educational materials for a competency-based curriculum for critical care residents.

Comparison of simulation debriefs with traditional needs assessment methods: a qualitative exploratory study in a critical care community setting.

OBJECTIVE: To better understand the potential of a needs assessment approach using qualitative data from manikin-based and virtual patient simulation debriefing sessions compared with traditional data collection methods (ie, focus groups and interviews). DESIGN: Original data from simulation debrief sessions was compared and contrasted with data from an earlier assessment of critical care needs in a community setting (using focus groups and interviews), thus undertaking secondary analysis of data. Time and cost data were also examined. Debrief sessions were coded using deductive and inductive techniques. Matrices were used to explore the commonalities, differences and emergent findings across the methods. SETTING: Critical care unit in a community hospital setting. RESULTS: Interviews and focus groups yielded 684 and 647 min of audio-recordings, respectively. The manikin-based debrief recordings averaged 22 min (total=130 min) and virtual patient debrief recordings averaged 31 min (total=186 min). The approximate cost for the interviews and focus groups was $13 560, for manikin-based simulation debriefs was $4030 and for the virtual patient debriefs was $3475. Fifteen of 20 total themes were common across the simulation debriefs and interview/focus group data. Simulation-specific themes were identified, including fidelity (environment, equipment and psychological) and the multiple roles of the simulation instructor (educative, promoting reflection and assessing needs). CONCLUSIONS: Given current fiscal realities, the dual benefit of being educative and identifying needs is appealing. While simulation is an innovative method to conduct needs assessments, it is important to recognise that there are trade-offs with the selection of methods.

Understanding of evaluation capacity building in practice: a case study of a national medical education organization.

INTRODUCTION: Evaluation capacity building (ECB) is a topic of great interest to many organizations as they face increasing demands for accountability and evidence-based practices. ECB is about building the knowledge, skills, and attitudes of organizational members, the sustainability of rigorous evaluative practices, and providing the resources and motivations to engage in ongoing evaluative work. There exists a solid foundation of theoretical research on ECB, however, understanding what ECB looks like in practice is relatively thin. Our purpose was to investigate what ECB looks like firsthand within a national medical educational organization. METHODS: The context for this study was the Acute Critical Events Simulation (ACES) organization in Canada, which has successfully evolved into a national educational program, driven by physicians. We conducted an exploratory qualitative study to better understand and describe ECB in practice. In doing so, interviews were conducted with program leaders and instructors so as to gain a richer understanding of evaluative processes and practices. RESULTS: A total of 21 individuals participated in the semistructured interviews. Themes from our qualitative data analysis included the following: evaluation knowledge, skills, and attitudes, use of evaluation findings, shared evaluation beliefs and commitment, evaluation frameworks and processes, and resources dedicated to evaluation. CONCLUSION: The national ACES organization was a useful case study to explore ECB in practice. The ECB literature provided a solid foundation to understand the purpose and nuances of ECB. This study added to the paucity of studies focused on examining ECB in practice. The most important lesson learned was that the organization must have leadership who are intrinsically motivated to employ and use evaluation data to drive ongoing improvements within the organization. Leaders who are intrinsically motivated will employ risk taking when evaluation practices and processes may be somewhat unfamiliar. Creating and maintaining a culture of data use and ongoing inquiry have enabled national ACES to achieve a sustainable evaluation practice.

Exploring the components of physician volunteer engagement: a qualitative investigation of a national Canadian simulation-based training programme.

OBJECTIVES: Conceptual clarity on physician volunteer engagement is lacking in the medical literature. The aim of this study was to present a conceptual framework to describe the elements which influence physician volunteer engagement and to explore volunteer engagement within a national educational programme. SETTING: The context for this study was the Acute Critical Events Simulation (ACES) programme in Canada, which has successfully evolved into a national educational programme, driven by physician volunteers. From 2010 to 2014, the programme recruited 73 volunteer healthcare professionals who contributed to the creation of educational materials and/or served as instructors. METHOD: A conceptual framework was constructed based on an extensive literature review and expert consultation. Secondary qualitative analysis was undertaken on 15 semistructured interviews conducted from 2012 to 2013 with programme directors and healthcare professionals across Canada. An additional 15 interviews were conducted in 2015 with physician volunteers to achieve thematic saturation. Data were analysed iteratively and inductive coding techniques applied. RESULTS: From the physician volunteer data, 11 themes emerged. The most prominent themes included volunteer recruitment, retention, exchange, recognition, educator network and quasi-volunteerism. Captured within these interrelated themes were the framework elements, including the synergistic effects of emotional, cognitive and reciprocal engagement. Behavioural engagement was driven by these factors along with a cue to action, which led to contributions to the ACES programme. CONCLUSION: This investigation provides a preliminary framework and supportive evidence towards understanding the complex construct of physician volunteer engagement. The need for this research is particularly important in present day, where growing fiscal constraints create challenges for medical education to do more with less.