Search

OBJECTIVE This scoping review will collate and summarize the current literature on what is known worldwide about organ donation following medical assistance in dying. The information gathered will be used to inform updates of current and future policies on organ donation following medical assistance in dying in Canada. INTRODUCTION Medical assistance in dying is a controversial and contentious issue worldwide. While more countries are legalizing medical assistance in this regard, very few allow organ donation after such assistance has been given. At present, Canada, Belgium, and The Netherlands are the only three countries that permit this procedure. This scoping review will be conducted to summarize the current state of evidence and practices regarding organ donation following medical assistance in dying. INCLUSION CRITERIA This review will consider articles and documents on individuals who choose organ donation following medical assistance in dying. Articles will be considered for inclusion if they explore organ donation following medical assistance in dying at home or in any health care setting in any country. Quantitative and qualitative studies, text and opinion papers, gray literature, and unpublished materials provided by researchers will be considered for inclusion. METHODS This review will be conducted in accordance with the JBI methodology for scoping reviews. Published and unpublished materials will be included. Databases will include MEDLINE, Embase, CINAHL, PsycINFO, Web of Science - Science Citation Index and Social Science Citation Index, and Academic Search Complete. Relevant gray literature and materials from organ donation organizations will be included. Two independent reviewers will screen all material, extract data, and complete the descriptive examination.

The identification of children with traumatic brain injury (TBI) who are at risk of death or poor global neurological functional outcome remains a challenge. Magnetic resonance imaging (MRI) can detect several brain pathologies that are a result of TBI; however, the types and locations of pathology that are the most predictive remain to be determined. Forty-two critically ill children with TBI were recruited prospectively from pediatric intensive care units at five Canadian children's hospitals. Pathologies detected on subacute phase MRIs included cerebral hematoma, herniation, cerebral laceration, cerebral edema, midline shift, and the presence and location of cerebral contusion or diffuse axonal injury (DAI) in 28 regions of interest were assessed. Global functional outcome or death more than 12 months post-injury was assessed using the Pediatric Cerebral Performance Category score. Linear modeling was employed to evaluate the utility of an MRI composite score for predicting long-term global neurological function or death after injury, and nonlinear Random Forest modeling was used to identify which MRI features have the most predictive utility. A linear predictive model of favorable versus unfavorable long-term outcomes was significantly improved when an MRI composite score was added to clinical variables. Nonlinear Random Forest modeling identified five MRI variables as stable predictors of poor outcomes: presence of herniation, DAI in the parietal lobe, DAI in the subcortical white matter, DAI in the posterior corpus callosum, and cerebral contusion in the anterior temporal lobe. Clinical MRI has prognostic value to identify children with TBI at risk of long-term unfavorable outcomes.

While most overdose deaths in Canada occur in the community, some patients are resuscitated, admitted to intensive care units having sustained severe anoxic brain injury, and have the potential to be organ donors. The purpose of this study was to determine the impact of the overdose crisis on organ donation in selected Canadian provinces. We obtained data on the total number of organ donors and those dying because of overdose in five Canadian provinces from 2014 to 2018. We also obtained data for January–June 2019 for four of five provinces (Quebec excepted). We accessed federal and provincial data on the number of overdose deaths and compared the proportion of organ donors who died of an overdose both over time and between provinces. The number of organ transplants resulting from donors dying of an overdose from three provinces was also determined. From 2014 to 2017, there was a 35% increase (554 to 747) in total deceased organ donors but a 294% increase (31 to 122) in organ donors dying of an overdose. While the proportion of organ donors dying from an overdose increased overall, this varied from 35% (42 of 121) in British Columbia to < 5% in both Quebec (9 of 182) and Nova Scotia (< 2 of 16). There were 1,043 organ transplants resulting from organ donors dying of overdose in BC, Ontario and Alberta although only 2.5–3.5% (297 of 10,858) of those dying of an overdose became organ donors. There has been an increase in organ donors dying from drug overdose in Canada. Regional variation mirrors differences in total opiate-related death.

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.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 (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.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.

Establishing when cerebral cortical activity stops relative to circulatory arrest during the dying process will enhance trust in donation after circulatory determination of death. We used continuous electroencephalography and arterial blood pressure monitoring prior to withdrawal of life sustaining measures and for 30 min following circulatory arrest to explore the temporal relationship between cessation of cerebral cortical activity and circulatory arrest. Qualitative and quantitative EEG analyses were completed. Among 140 screened patients, 52 were eligible, 15 were enrolled, 11 completed the full study, and 8 (3 female, median age 68 years) were included in the analysis. Across participants, EEG activity stopped at a median of 78 (Q1 = -387, Q3 = 111) seconds before circulatory arrest. Following withdrawal of life sustaining measures there was a progressive reduction in electroencephalographic amplitude (p = .002), spectral power (p = .008), and coherence (p = .003). Prospective recording of cerebral cortical activity in imminently dying patients is feasible. Our results from this small cohort suggest that cerebral cortical activity does not persist after circulatory arrest. Confirmation of these findings in a larger multicenter study are needed to help promote stakeholder trust in donation after circulatory determination of death.

IntroductionIn donation after circulatory determination of death, death is declared 5 min after circulatory arrest. This practice assumes, but does not explicitly confirm, permanent loss of brain activity. While this assumption is rooted a strong physiological rationale, paucity of direct human data regarding temporal relationship between cessation of brain activity and circulatory arrest during the dying process threatens public and healthcare provider trust in deceased organ donation.Methods and analysisIn this cohort study, we will prospectively record cerebral and brainstem electrical activity, cerebral blood flow velocity and arterial blood pressure using electroencephalography (EEG), brainstem evoked potentials, transcranial doppler and bedside haemodynamic monitors in adult patients undergoing planned withdrawal of life sustaining measures in the intensive care units at five hospital sites for 18 months. We will use MATLAB to synchronise waveform data and compute the time of cessation of each signal relative to circulatory arrest. Our primary outcome is the feasibility of patient accrual, while secondary outcomes are (a) proportion of patients with complete waveform recordings and data transfer to coordinating site and (b) time difference between cessation of neurophysiological signals and circulatory arrest. We expect to accrue 1 patient/site/month for a total of 90 patients.Ethics and disseminationWe have ethics approval from Clinical Trials Ontario (protocol #3862, version 1.0, date 19 January 2022.) and the relevant Research Ethics Board for each site. We will obtain written informed consent from legal substitute decision makers. We will present study results at research conferences including donor family partner forum and in peer-reviewed publications.Trial registration numberNCT05306327.

Background: Optimizing the approach to and consent of potential organ donors maximizes patient autonomy and the availability of organs for transplants. We set out to identify modifiable factors associated with donation consent. Methods: We conducted a retrospective cohort study of consecutive adults (≥ 18 yr) referred for organ donation in Ontario between April 2013 and June 2019. We analyzed patient clinical data and demographics, data on substitute decision-makers and characteristics of the donation consent approach. Study outcomes were consent for organ donation and approach rate. We evaluated independent associations between consent and approach-and system-level factors. Results: We identified 34 837 referrals for organ donation, of which 6548 (18.8%) substitute decision-makers were approached for consent. Of these, 3927 (60.0% of approaches) consented for organ donation and 1883 (48.0% of consents) patients proceeded to be organ donors. The most common reason substitute decision-makers were not approached for consent in a case with donation potential was a late referral by the health care team (45.2%). Modifiable factors independently associated with consent included a telephone approach for consent (adjusted odds ratio [OR] 0.46, 95% confidence interval [CI] 0.35–0.58) and a collaborative approach by a physician and donation coordinator (adjusted OR 1.26, 95% CI 1.01–1.59). Interpretation: Consent for organ donation was associated with several modifiable factors. Organizations should target interventions to ensure timely referrals to organ donation organizations, increase in-person consent approaches and increase physician participation in the approach process.

Neurologic determination of death (NDD) is legally accepted as death in Canada but remains susceptible to misunderstandings. In some cases, families request continued organ support after NDD. Conflicts can escalate to formal legal challenges, causing emotional, financial, and moral distress for all involved. We describe prevalence, characteristics, and common experiences with requests for continued organ support following NDD in Canada.Mixed-methods design combining anonymous online survey with semi-structured interviews of Canadian critical care physicians (448 practitioners, adult and pediatric).One hundred and six physicians responded to the survey and 12 participated in an interview. Fifty-two percent (55/106) of respondents had encountered a request for continued organ support after NDD within two years, 47% (26/55) of which involved threat of legal action. Requests for continued support following NDD ranged from appeals for time for family to gather before ventilator removal to disagreement with the concept of NDD. Common responses to requests included: consultation with an additional physician (54%), consultation with spiritual services (41%), and delay of one to three days for NDD acceptance (49%). Respondents with prior experience were less likely to recommend ancillary tests (P = 0.004) or consultation with bioethics services (P = 0.004). Qualitative analysis revealed perceptions that requests for continued organ support were driven by mistrust, tensions surrounding decision-making, and cultural differences rather than a lack of specific information about NDD.Family requests for continued somatic support following NDD were encountered by half our sample of Canadian critical care physicians. Mitigation strategies require attention to the multifaceted social contexts surrounding these complex scenarios.RéSUMé: OBJECTIF: Au Canada, le diagnostic de décès neurologique (DDN) est légalement accepté en tant que décès, mais il est encore mal compris parfois. Dans certains cas, les familles demandent de maintenir artificiellement les fonctions vitales après un DDN. Les conflits peuvent dégénérer et devenir des contestations judiciaires formelles, provoquant de la détresse émotionnelle, financière et morale pour tous. Nous décrivons la prévalence, les caractéristiques et les expériences fréquemment vécues en lien avec des demandes de maintien artificiel des fonctions vitales après un DDN au Canada. MéTHODE: Méthodologie mixte combinant un sondage électronique anonyme à des entretiens semi-structurés de médecins intensivistes canadiens (448 praticiens, populations adulte et pédiatrique). RéSULTATS: Cent six médecins ont répondu au sondage et 12 ont participé à un entretien. Cinquante-deux pour cent (55/106) des répondants avaient déjà reçu une demande de maintien des fonctions vitales après un DDN au cours des deux dernières années, dont 47 % (26/55) étaient accompagnées de menaces de poursuite judiciaire. Les demandes de maintien continu à la suite d’un DDN allaient des requêtes de temps supplémentaire pour que la famille puisse se réunir avant de débrancher le respirateur aux désaccords quant au concept même de DDN. Les réponses fréquentes aux demandes étaient : la consultation d’un autre médecin (54 %), la consultation des services spirituels (41 %), et un délai d’un à trois jours pour accepter le DDN (49 %). Les répondants ayant déjà eu une expérience similaire avaient moins tendance à recommander des tests supplémentaires (P = 0,004) ou une consultation auprès des services de bioéthique (P = 0,004). L’analyse qualitative a révélé des perceptions selon lesquelles les demandes de maintien des soins étaient motivées par la méfiance, des tensions autour de la prise de décision et des différences d’ordre culturel plutôt que par le manque d’informations spécifiques concernant le DDN. CONCLUSION: La moitié de notre échantillon de médecins intensivistes canadiens ont déjà été confrontés à des demandes de la famille pour maintenir le soutien des fonctions vitales à la suite d’un DDN. Les stratégies de mitigation doivent tenir compte des contextes sociaux aux multiples facettes entourant ces situations complexes.

We surveyed Canadian critical care physicians who may care for patients who are potential organ donors to understand their attitudes and knowledge of legislation governing the deceased organ donation system. We used a web-based, self-administered survey that included questions related to opt-out consent and mandatory referral legislation. Potential participants were identified through membership lists of professional societies and manual searches. We designed our survey using standardized methods and administered it in February and March 2018. Fifty percent (263/529) of potential participants completed the questionnaire. A majority (61%; 144/235) supported a change towards an opt-out consent model, and 77% (181/235) stated they believe it would increase donation rates. Asked if opt-out consent would change their practices, 71% (166/235) stated an opt-out model would not change how or if they approach families to discuss donation. Fifty-six percent (139/249) supported mandatory referral laws, while only 42% (93/219) of those working in provinces with mandatory referral correctly stated that such laws exist in their province. Respondents gave variable responses on who should be accountable when patients are not referred, and 16% (40/249) believed no one should be held accountable. While a majority of critical care physicians supported opt-out consent and mandatory referral, many were neutral or against it. Many were unaware of existing laws and had variable opinions on how to ensure accountability. Efforts to increase understanding of how legislative models influence practice are required for any law to achieve its desired effect.

Objective The objective of this review is to develop a comprehensive description of burnout and compassion fatigue, including risk/protective factors, among organ and tissue donation coordinators worldwide. Introduction Research on turnover rates among organ and tissue donation coordinators has shown that job tenure generally lasts less than three years, a possible consequence of burnout and compassion fatigue. Increased turnover rates of organ and tissue donation coordinators have significant impact on the ability of ODOs to optimize organ donation. This current scoping review will help inform understanding of the nature of burnout and compassion fatigue in this population as well as the available strategies for managing it. Inclusion criteria Articles examining health care professionals working as organ and tissue donation coordinators, with the main concepts of interest being burnout and/or compassion fatigue, will be considered. Articles within the context of organ and tissue donation coordinators in acute care settings at any part of the organ donation process will also be considered for inclusion in this review. Quantitative and qualitative studies, text and opinion papers, unpublished material (eg, unpublished research data, reports, institutional protocols, government documents) provided by researchers in the organ donation field worldwide will also be examined for possible inclusion. Methods The scoping review will be performed in accordance with JBI methodology. Published and unpublished papers from 1980 to the present will be searched. Databases will include MEDLINE (Ovid), CINAHL, Embase, LILACS, PsycINFO, and PTSDpubs, while appropriate gray literature will be searched. Two reviewers will screen the papers according to predefined inclusion and exclusion criteria, extract data for specific variables, and perform descriptive examination.

Canadian donor management practices have not been reported. Our aim was to inform clinicians and other stakeholders about the range of current practices. This prospective observational cohort study enrolled consecutive, newly consented organ donors from August 1 2015 to July 31 2018 at 27 academic and five community adult intensive care units in British Columbia, Alberta, Ontario, and Quebec. Research staff prospectively recorded donor management data. Provincial organ donation organizations verified the organs donated. We formally compared practices across provinces. Over a median collection period of eight months, 622 potential donors were classified at baseline as having neurologic determination of death (NDD donors; n = 403) or circulatory death (DCD donors; n = 219). Among NDD donors, 85.6% underwent apnea testing (rarely with carbon dioxide insufflation), 33.2% underwent ancillary testing, and subsequent therapeutic hypothermia (34–35°C) was rare. Neurologic determination of death donors were more hemodynamically unstable with most having received vasopressin and norepinephrine infusions, with a large majority having received high-dose corticosteroids and intravenous thyroxine. Among DCD donors, 61.6% received corticosteroids, and 8.9% received thyroxine. Most donors did not receive lung-protective ventilation strategies. Invasive procedures after donation consent included bronchoscopy (71.7%), cardiac catheterization (NDD donors only; 21.3%), and blood transfusions (19.3%). Physicians ordered intravenous antemortem heparin for 94.8% of DCD donors. The cohort donated 1,629 organs resulting in 1,532 transplants. Case selection, death determinations, and hormone, nutrition and heparin practices all varied across provinces. These study findings highlight areas for knowledge translation and further clinical research. Interprovincial discrepancies will likely pose unique challenges to national randomized trials. Trial registration: www.clinicaltrials.gov (NCT03114436); registered 10 April, 2017.

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.

Research to inform the care of neurologically deceased organ donors is complicated by a lack of standards for research consent. In this systematic review, we aim to describe current practices of soliciting consent for participation in prospective studies of neurologically deceased donors, including the frequency and justification for these various models of consent. Among the 74 studies included, 14 did not report on any regulatory review, and 13 did not report on the study consent procedures. Of the remaining 47 studies, 24 utilized a waiver of research consent. The most common justification for a waiver of research consent related to the fact that neurologically deceased donors are not considered human subjects. In conclusion, among studies of neurologically deceased donors, research consent models vary and are inconsistently reported. Consensus and standardization in the application of research consent models will help to advance this emerging field of research.

Transplant rates in Ontario rose steeply in the decade prior to the COVID-19 pandemic. Reasons for that increase remain unclear, but the inter-organizational arrangement of organ donation programs may have contributed. However, there is a paucity of literature investigating these inter-organizational arrangements, with a limited understanding of how communication facilitates organ donation. Understanding these arrangements may help to re-establish rising organ donation rates post-pandemic.To describe interprofessional interactions of Organ and Tissue Donation Coordinators (OTDCs) during organ donation cases, within organ donation programs in Ontario, from an organizational perspective (describing structure, context, process).Mixed-method social network analysis (SNA) approach analyzing 14 organ donation cases just before the COVID-19 pandemic.Structure: Social network graphs depict the joint work performed by hospital staff and OTDCs, with a great part of the communication being processed through the OTDC.Network density ranged from 0.05 to 0.24 across cases, and health care professionals perceived an atmosphere of shared vision and trust among team members.Most networks had a degree centralization0.50 suggesting a decentralized information flow, and participants perceived decisions being jointly made. The characteristic path length of cases ranged from 1.6 to 3.2, suggesting potential for rapid information diffusion. Overall, data reinforced the OTDC role of intermediator within the communication process, and hospital staff perceived OTDCs as central players. Hospital staff and OTDCs reported frustration with some aspects of the flow of information during the organ allocation processes.Findings from this study provide a network map of communications within organ donation cases and reinforce the importance of the OTDC role. Opportunities for quality improvement within these processes are identified.

ObjectiveTo collate and summarise the literature on the quality improvement tools that have been developed for deceased organ donation processes after circulatory determination of death and neurological determination of death.DesignScoping review using the Joanna Briggs Institute framework.Data sourcesWe searched for published (MEDLINE, Embase, PsycINFO, CINAHL, Web of Science) and unpublished literature (organ donation organisation websites worldwide). The search was initially conducted on 17 July 2021 and updated on 1 June 2022. Included articles discussed the creation and/or use of quality improvement tools to manage deceased organ donation processes. Two independent reviewers screened the references, extracted and analysed the data.Results40 references were included in this review, and most records were written in English (n=38), originated in Canada (n=21), published between 2016 and 2022 (n=22), and were specific for donation after neurological determination of death (n=20). The tools identified included checklists, algorithms, flow charts, charts, pathways, decision tree maps and mobile apps. These tools were applied in the following phases of the organ donation process: (1) potential donor identification, (2) donor referral, (3) donor assessment and risk, (4) donor management, (5) withdrawal of life-sustaining measures, (6) death determination, (7) organ retrieval and (8) overall organ donation process.ConclusionsWe conducted a thorough investigation of the available quality improvement tools for deceased organ donation processes. The existing evidence lacks details in the report of methods used for development, testing and impact of these tools, and we could not locate tools specific for some phases of the organ donation process. Lastly, by mapping existing tools, we aim to facilitate both clinician choices among available tools, as well as research work building on existing knowledge.

IntroductionThe physiology of dying after withdrawal of life-sustaining measures (WLSM) is not well described in children. This lack of knowledge makes predicting the duration of the dying process difficult. For families, not knowing this process’s duration interferes with planning of rituals related to dying, travel for distant relatives and emotional strain during the wait for death. Time-to-death also impacts end-of-life care and determines whether a child will be eligible for donation after circulatory determination of death. This scoping review will summarise the current literature about what is known about the dying process in children after WLSM in paediatric intensive care units (PICUs).Methods and analysisThis review will use Joanna Briggs Institute methodology for scoping reviews. Databases searched will include Ovid MEDLINE, Ovid Embase, Cochrane Central Register of Controlled Trials via EBM Reviews Ovid, Ovid PsycINFO, CINAHL and Web of Science. Literature reporting on the physiology of dying process after WLSM, or tools that predict time of death in children after WLSM among children aged 0–18 years in PICUs worldwide will be considered. Literature describing the impact of prediction or timing of death after WLSM on families, healthcare workers and the organ donation process will also be included. Quantitative and qualitative studies will be evaluated. Two independent reviewers will screen references by title and abstract, and then by full text, and complete data extraction and analysis.Ethics and disseminationThe review uses published data and does not require ethics review. Review results will be published in a peer-reviewed scientific journal.

Intensive care physicians play an important role in the identification and referral of potential organ donors in Canada. Nevertheless, little is known about intensivists’ attitudes or behaviours in situations where families override previously expressed consent to donate; nor why physicians elect not to refer patients who are potential donors to provincial organ donation organizations (physician non-referral). We integrated questions regarding family override and physician non-referral into an online, self-administered survey of Canadian intensivists. We report results descriptively. Fifty percent of targeted respondents (n = 550) participated. Fifty-five percent reported having witnessed family override situations and 44% reported having personally not referred patients who were potential donors. Fifty-six percent of respondents stated they would not pursue donation in the face of family override; 2% stated they would continue with the donation process. Fear of loss of trust in the donation system (81%) and obligation to respect the grief and desires of surrogate decision makers (71%) were frequently reported reasons to respect family override requests. Respondents who chose not to refer patients often did so based on organ dysfunction they assumed would preclude donation (59%), or a perception that the family was too distressed to consider donation (42%). No respondents reported that personally held beliefs against organ donation influenced their decision. Physicians caring for patients who are potential organ donors commonly encounter both family override and physician non-referral situations. Knowledge translation of optimal practices in identification and referral could help ensure that physician practices align with legal requirements and practice recommendations.

Extracorporeal membrane oxygenation (ECMO) is used as temporary cardiorespiratory support in critically ill patients. Little is known about population-level short- and long-term outcomes following ECMO, including healthcare use and health system cost across a wide range of sectors. Population-based cohort study in Ontario, Canada (October 1, 2009–March 31, 2017) of adult patients (≥ 18 years) receiving ECMO for cardiorespiratory support. We captured outcomes through linkage to health administrative databases. Primary outcome was mortality during hospitalization, as well as at 7 days, 30 days, 1 year, 2 years, and 5 years following ECMO initiation. We analyzed health system costs (in Canadian dollars) in the 1 year following the date of the index admission. A total of 692 patients were included. Mean (standard deviation [SD]) age was 51.3 (16.0) years. Median (interquartile range [IQR]) time to ECMO initiation from date of admission was 2 (0–9) days. In-hospital mortality was 40.0%. Mortality at 1 year, 2 years, and 5 years was 45.1%, 49.0%, and 57.4%, respectively. Among survivors, 78.4% were discharged home, while 21.2% were discharged to continuing care. Median (IQR) total costs in the 1 year following admission among all patients were Canadian $130,157 (Canadian $58,645–Canadian $240,763), of which Canadian $91,192 (Canadian $38,507–Canadian $184,728) were attributed to inpatient care. Hospital mortality among critically ill adults receiving ECMO for advanced cardiopulmonary support is relatively high, but does not markedly increase in the years following discharge. Survivors are more likely to be discharged home than to continuing care. Median costs are high, but largely reflect inpatient hospital costs, and not costs incurred following discharge.