Taking a "Care Pathway/Whole Systems" Approach to Equality Diversity Inclusion (EDI) in Organ Donation and Transplantation in Relation to the Needs of "Ethnic/Racial/Migrant" Minority Communities: A Statement and a Call for Action.

International evidence shows variation in organ donation and transplantation (ODT) based upon a range of patient characteristics. What is less well understood is the impact of patient "ethnicity/race/immigration background," as these terms are defined and intended differently across countries. We also know that these characteristics do not operate in isolation but intersect with a range of factors. In this paper, we propose a framework that seeks to clarify the definition of the key terms "ethnicity/race/migrant" and to review how these communities are operationalized across European studies about inequities in ODT. Further, patients and the public wish to see Equality Diversity Inclusion (EDI) approaches in their everyday lives, not just in relation to ODT. We propose a 'care pathway/whole-systems' approach to ODT encompassing culturally competent public health interventions for a) the prevention and management of chronic diseases, b) improvements in public engagement for the promotion of the culture of ODT and enhancements in end-of-life care, through to c) enhanced likelihood of successful transplant among migrant/ethnic minority communities. Our framework recognizes that if we truly wish to take an EDI approach to ODT, we need to adopt a more social, human and holistic approach to examining questions around patient ethnicity.

Organ Donation After Euthanasia in Patients Suffering From Psychiatric Disorders: 10-Years of Preliminary Experiences in the Netherlands.

Euthanasia based on psychiatric suffering, followed by subsequent organ donation, is considered medically and legally permissible in the Netherlands. Although organ donation after euthanasia (ODE) in patients suffering from unbearable psychiatric illness is performed, it is not specifically addressed in the Dutch guideline on organ donation after euthanasia, and national data on ODE in psychiatric patients have not yet been published. In this article, the preliminary results of the 10-year Dutch case series of psychiatric patients who choose ODE are presented and potential factors influencing opportunities for donation in this population are discussed. We conclude that further future in-depth qualitative exploration of ODE in patients suffering from psychiatric illness and its associated ethical and practical dilemmas, including the consequences for the patient and their family and healthcare professionals, will be important to help make sense of potential barriers to donation for people undergoing euthanasia as a result of psychiatric suffering.

Corrigendum: An Inventory of Deceased Donor Family Care and Contact Between Donor Families and Recipients in 15 European Countries.

[This corrects the article DOI: 10.3389/ti.2021.10188.].

Development and external validation study combining existing models and recent data into an up-to-date prediction model for evaluating kidneys from older deceased donors for transplantation.

With a rising demand for kidney transplantation, reliable pre-transplant assessment of organ quality becomes top priority. In clinical practice, physicians are regularly in doubt whether suboptimal kidney offers from older donors should be accepted. Here, we externally validate existing prediction models in a European population of older deceased donors, and subsequently developed and externally validated an adverse outcome prediction tool. Recipients of kidney grafts from deceased donors 50 years of age and older were included from the Netherlands Organ Transplant Registry (NOTR) and United States organ transplant registry from 2006-2018. The predicted adverse outcome was a composite of graft failure, death or chronic kidney disease stage 4 plus within one year after transplantation, modelled using logistic regression. Discrimination and calibration were assessed in internal, temporal and external validation. Seven existing models were validated with the same cohorts. The NOTR development cohort contained 2510 patients and 823 events. The temporal validation within NOTR had 837 patients and the external validation used 31987 patients in the United States organ transplant registry. Discrimination of our full adverse outcome model was moderate in external validation (C-statistic 0.63), though somewhat better than discrimination of the seven existing prediction models (average C-statistic 0.57). The model's calibration was highly accurate. Thus, since existing adverse outcome kidney graft survival models performed poorly in a population of older deceased donors, novel models were developed and externally validated, with maximum achievable performance in a population of older deceased kidney donors. These models could assist transplant clinicians in deciding whether to accept a kidney from an older donor.

An Inventory of Deceased Donor Family Care and Contact Between Donor Families and Recipients in 15 European Countries.

Families of organ donors play an important role in the deceased organ donation process. The aim of this study was to gain insight into donor family care by creating an inventory of practice in various European countries. A questionnaire about donor family care and contact between donor families and recipients was developed. Representatives of the organ donor professionals of 15 European countries responded (94%). The donor coordinator plays a key role in care for the donor family. All countries provide information about the donation results to the families, although diminished due to privacy laws. Anonymous written contact between donor families and recipients is possible in almost all countries and direct contact in only a few. Remembrance ceremonies exist in most countries. Half of the respondents thought the aftercare could improve. This first inventory shows that differences exist between countries, depending on the organisation of the donation process, the law and the different role of the professionals. Direct contact between donor families and recipients is rarely supported by the donation organisation. To date there has been limited research about the experience of donor family aftercare and we would urge all donation organisations to consider this as a priority area.

Building a bridge between patients and transplant healthcare professionals - a descriptive study.

This article describes a pathway for collaboration between transplant healthcare professionals and organ recipients. Under the umbrella of the European Society for Organ Transplantation (ESOT) a joint initiative started from three Sections and Committees of ESOT: EDTCO (European Donation and Transplant Coordination Organisation), ETHAP (European Transplant Allied Healthcare Professionals) and ELPAT (Ethical, Legal and Psycho-social Aspects of Transplantation). The formal 'kick-off' of the Advisory Board Meeting of the European Transplant Patient Organisation (ETPO) was during the ESOT congress in 2019. The aim was to produce a series of statements to serve as a path to dialogue between patients and transplant professionals and to define the next steps towards giving a voice to the patient network. To include the patients' perspectives, two surveys have been performed. The results identified the unmet needs and lead to a proposal for future plans. Educational activities have since started leading to a patient learning workstream. All initiatives taken have one purpose: to include patients, give them a voice and build a foundation for collaboration between patients and transplant professionals. ESOT has created a platform for mutual understanding, learning and a collaborative partnership between ETPO and European donation and transplant professionals.

Determining the impact of timing and of clinical factors during end-of-life decision-making in potential controlled donation after circulatory death donors.

Controlled donation after circulatory death (cDCD) occurs after a decision to withdraw life-sustaining treatment and subsequent family approach and approval for donation. We currently lack data on factors that impact the decision-making process on withdraw life-sustaining treatment and whether time from admission to family approach, influences family consent rates. Such insights could be important in improving the clinical practice of potential cDCD donors. In a prospective multicenter observational study, we evaluated the impact of timing and of the clinical factors during the end-of-life decision-making process in potential cDCD donors. Characteristics and medication use of 409 potential cDCD donors admitted to the intensive care units (ICUs) were assessed. End-of-life decision-making was made after a mean time of 97 hours after ICU admission and mostly during the day. Intracranial hemorrhage or ischemic stroke and a high APACHE IV score were associated with a short decision-making process. Preserved brainstem reflexes, high Glasgow Coma Scale scores, or cerebral infections were associated with longer time to decision-making. Our data also suggest that the organ donation request could be made shortly after the decision to stop active treatment and consent rates were not influenced by daytime or nighttime or by the duration of the ICU stay.

Appointing nurses trained in organ donation to improve family consent rates.

BACKGROUND: One of the most important bottlenecks in the organ donation process worldwide is the high family refusal rate. AIMS AND OBJECTIVES: The main aim of this study was to examine whether family guidance by trained donation practitioners increased the family consent rate for organ donation. DESIGN: This was a prospective intervention study. METHODS: Intensive and coronary care unit nurses were trained in communication about donation (ie, trained donation practitioners) in two hospitals. The trained donation practitioners were appointed to guide the families of patients with a poor medical prognosis. When the patient became a potential donor, the trained donation practitioner was there to guide the family in making a well-considered decision about donation. We compared the family consent rate for donation with and without the guidance of a trained donation practitioner. RESULTS: The consent rate for donation with guidance by a trained donation practitioner was 58.8% (20/34), while the consent rate without guidance by a trained donation practitioner was 41.4% (41/99, P = 0.110) in those patients where the family had to decide on organ donation. CONCLUSIONS: Our data suggest that family guidance by a trained donation practitioner could benefit consent rates for organ donation. RELEVANCE TO CLINICAL PRACTICE: Trained nurses play an important role in supporting the families of patients who became potential donors to guide them through the decision-making process after organ donation request.

Interventions aimed at healthcare professionals to increase the number of organ donors: a systematic review.

BACKGROUND: The last decade, there have been many initiatives worldwide to increase the number of organ donors. However, it is not clear which initiatives are most effective. The aim of this study is to provide an overview of interventions aimed at healthcare professionals in order to increase the number of organ donors. METHODS: We systematically searched PubMed, EMBASE, CINAHL, PsycINFO, and the Cochrane Library for English language studies published until April 24, 2019. We included studies describing interventions in hospitals aimed at healthcare professionals who are involved in the identification, referral, and care of a family of potential organ donors. After the title abstract and full-text selection, two reviewers independently assessed each study's quality and extracted data. RESULTS: From the 18,854 records initially extracted from five databases, we included 22 studies in our review. Of these 22 studies, 14 showed statistically significant effects on identification rate, family consent rate, and/or donation rate. Interventions that positively influenced one or more of these outcomes were training of emergency personnel in organ donation, an electronic support system to identify and/or refer potential donors, a collaborative care pathway, donation request by a trained professional, and additional family support in the ICU by a trained nurse. The methodological quality of the studies was relatively low, mainly because of the study designs. CONCLUSIONS: Although there is paucity of data, collaborative care pathways, training of healthcare professionals and additional support for relatives of potential donors seem to be promising interventions to increase the number of organ donors. TRIAL REGISTRATION: PROSPERO, CRD42018068185.

Physician Experiences with Communicating Organ Donation with the Relatives: A Dutch Nationwide Evaluation on Factors that Influence Consent Rates.

BACKGROUND: The aim of this nationwide observational study is to identify modifiable factors in communication about organ donation that influence family consent rates. METHODS: Thirty-two intensivists specialized in organ donation systematically evaluated all consecutive organ donation requests with physicians in the Netherlands between January 2013 and June 2016, using a standardized questionnaire. RESULTS: Out of 2528 consecutive donation requests, 2095 (83%) were evaluated with physicians. The questionnaires of patients registered with consent or objection in the national donor registry were excluded from analysis. Only those questionnaires, in which the family had to make a decision about donation, were analyzed (n = 1322). Independent predictors of consent included: requesting organ donation during the conversation about futility of treatment (OR 1.8; p = 0.004), understanding of the term 'brain death' by the family (OR 2.4; p = 0.002), and consulting a donation expert prior to the donation request (OR 3.4; p < 0.001). CONCLUSIONS: Our study showed that decoupling the organ donation conversation from the conversation about futility of treatment was associated with lower family consent rates. Comprehension of the concept of brain death by the family and consultation with a transplant coordinator before the organ donation request by the physician could positively influence consent rates.

Are all tissue donors recognised? A cohort study in three Dutch hospitals.

Nowadays, the demand for tissue transplantation has significantly increased. To optimize donor recruitment, the potential availability of tissue donors has to be evaluated. In 2011 we conducted a cohort study in three Dutch hospitals in the Netherlands. The potential amount of eligible tissue donors found, based on medical records in these hospitals is compared to the physician's donation form report. In total 1,342 patient records were analysed. From these records, the donation officers considered 484 patients as a potential tissue donor (36.1 %). Despite the absence of contra-indication, the physician did not recognise 25 % (n = 123/484) of potential tissue donors. Physicians' lack of sufficient knowledge of tissue donation was the main cause of adequately identifying tissue donors. A higher percentage of tissue donors in these Dutch hospitals should be feasible through creating awareness and education regarding tissue donation.

Disparities in kidney transplantation accessibility among immigrant populations in Europe: A systematic review and meta-analysis.

BACKGROUND AND OBJECTIVES: Disparities in access to healthcare for patients with an immigration background are well-known. The aim of this study was to determine whether disparities among immigrant populations translate into a relative difference in the number of kidney transplants (KT) performed in documented immigrant patients (first and second generation) relative to native-born patients in Europe. METHODS: A literature search was performed in PubMed from inception to 11-10-2022. Studies were eligible if: (1) written in English, (2) included immigrant and native-born KT patients, (3) performed in countries registered as Council of Europe members, (4) focused on documented first- and second-generation immigrant populations [1]. Systematic reviews, literature reviews, and case reports or articles about emigration, non-KT, and undocumented immigrants were excluded. The outcome measurement was a relative percentage of KTs to the total population per 100.000 residents. By dividing the immigrant percentages by the native-born resident percentages, the odds ratio (OR) was calculated in a meta-analysis. The risk of bias was assessed; articles with high risk of bias were excluded in a second meta-analysis. RESULTS: Out of 109 articles, 5 were included (n = 24,614). One Italian study (n = 24,174) had a ratio below 1, being 0.910 (95%CI 0.877-0.945). The other four articles (n = 196, n = 283, n = 77, n = 119) had ratios above 1: 1.36 (95%CI 0.980-1.87), 2.04 (95%CI 1.56-2.68), 2.23 (95%CI 1.53-3.25) and 2.64 (95%CI 1.68-4.15). After performing a meta-analysis, the OR did not show a significant difference: 1.68 (95%CI 1.03-2.75). After bias correction, this remained unchanged: 1.78 (95%CI 0.961-3.31). CONCLUSIONS: In our meta-analysis we did not find a significant difference in the relative number of KTs performed in immigrant versus native-born populations in Europe. However, a lesser likelihood for immigrants to receive a pre-emptive kidney transplantation was found. Large heterogeneity between studies (e.g. different sample size, patient origins, study duration, adult vs children patients) was a shortcoming to our analysis. Nevertheless, our article is the first review in this understudied topic. As important questions (e.g. on ethnicity, living donor rate) remain, future studies are needed to address them.

Imprecise definitions of starting points in retrospectively reviewing potential organ donors causes confusion: call for a reproducible method like 'imminent brain death'.

Low donor supply and the high demand for transplantable organs is an international problem. The efficiency of organ procurement is often expressed by donor conversion rates (DCRs). These rates differ among countries, but a uniform starting point for defining a potential heart-beating donor is lacking. Imprecise definitions cause confusion; therefore, we call for a reproducible method like imminent brain death (IBD), which contains criteria in detail to determine potential heart-beating donors. Medical charts of 4814 patients who died on an ICU in Dutch university hospitals between January 2007 and December 2009 were reviewed for potential heart-beating donors. We compared two starting points: 'Severe Brain Damage' (SBD) (old definition) and IBD (new definition), which differ in the number of absent brainstem reflexes. Of the potential donors defined by IBD 45.6% fulfilled the formal brain death criteria, compared with 33.6% in the larger SBD group. This results in a higher DCR in the IBD group (40% vs. 29.5%). We illustrated important differences in DCRs when using two different definitions, even within one country. To allow comparison among countries and hospitals, one universal definition of a potential heart-beating donor should be used. Therefore, we propose the use of IBD.

Prospective Multicenter Observational Cohort Study on Time to Death in Potential Controlled Donation After Circulatory Death Donors-Development and External Validation of Prediction Models: The DCD III Study.

BACKGROUND: Acceptance of organs from controlled donation after circulatory death (cDCD) donors depends on the time to circulatory death. Here we aimed to develop and externally validate prediction models for circulatory death within 1 or 2 h after withdrawal of life-sustaining treatment. METHODS: In a multicenter, observational, prospective cohort study, we enrolled 409 potential cDCD donors. For model development, we applied the least absolute shrinkage and selection operator (LASSO) regression and machine learning-artificial intelligence analyses. Our LASSO models were validated using a previously published cDCD cohort. Additionally, we validated 3 existing prediction models using our data set. RESULTS: For death within 1 and 2 h, the area under the curves (AUCs) of the LASSO models were 0.77 and 0.79, respectively, whereas for the artificial intelligence models, these were 0.79 and 0.81, respectively. We were able to identify 4% to 16% of the patients who would not die within these time frames with 100% accuracy. External validation showed that the discrimination of our models was good (AUCs 0.80 and 0.82, respectively), but they were not able to identify a subgroup with certain death after 1 to 2 h. Using our cohort to validate 3 previously published models showed AUCs ranging between 0.63 and 0.74. Calibration demonstrated that the models over- and underestimated the predicted probability of death. CONCLUSIONS: Our models showed a reasonable ability to predict circulatory death. External validation of our and 3 existing models illustrated that their predictive ability remained relatively stable. We accurately predicted a subset of patients who died after 1 to 2 h, preventing starting unnecessary donation preparations, which, however, need external validation in a prospective cohort.

Appointing 'trained donation practitioners' results in a higher family consent rate in the Netherlands: a multicenter study.

The consent process for organ and tissue donation is complex, both for families and professionals. To help professionals in broaching this subject we performed a multicenter study. We compared family consent to donation in three hospitals between December 2007 and December 2009. In the intervention hospital, trained donation practitioners (TDP) guided 66 families throughout the time in the ICU until a decision regarding donation had been reached. In the first control hospital, without any family guidance or training, 107 families were approached. In the second control hospital 'hostesses', who were not trained in donation questions, supported 99 families during admittance. A total of 272 families were requested to donate. We primarily compared consent rates, but also asked families about their experiences through a questionnaire. Family consent rate was significantly higher in the intervention hospital: 57.6% (38/66), than in the control hospitals: 34.6% (37/107) and 39.4% (39/99). The 69% response rate to the questionnaire -~5 months after death - showed no confounding variables that could have influenced the consent rate. Appointing TDPs in the intervention hospital to guide families during admittance and the donation decision-making process, results in higher family consent rates.

Organ donation performance in the Netherlands 2005-08; medical record review in 64 hospitals.

BACKGROUND: The Netherlands has a low number of deceased organ donors per million population. As long as there is a shortage of suitable organs, the need to evaluate the donor potential is crucial. Only in this way can bottlenecks in the organ donation process be detected and measures subsequently taken to further improve donation procedures. METHODS: Within a time frame of 4 years, 2005-08, medical charts of all intensive care deaths in 64 hospitals were reviewed by transplant coordinators and donation officers. Data were entered in a web-based application of the Dutch Transplant Foundation, both to identify the number of potential organ donors (including donation after cardiac death), as well as to analyse the reasons for potential donor loss. RESULTS: In total, 23 508 patients died in intensive care units, of which 64% were younger than 76 years. The percentage of all potential organ donors out of the total number of deaths decreased from 8.2% in 2005 to 7.1% in 2008. Donor detection increased from 96% in 2005 to 99% in 2008. Of the potential donors, 17-21% recorded consent and 17-18% recorded objection in the national Donor Register. If the Donor Register was not decisive, the consent rate of families approached for organ donation was 35% in 2005, 29% in 2006, 41% in 2007 and 31% in 2008. The overall conversion rate (the number of actual donors divided by the number of potential donors) was 30%, 26%, 35% and 29% in these years. In the group of potential donor losses, objection by families accounted for about 60% during this study. CONCLUSIONS: This study showed that the maximal number of potential organ donors is about three times higher than the number of effective organ donors. The main reason accounting for approximately 60% of the potential donor losses was the high family refusal rate. The year 2007 showed that a higher percentage of deceased organ donors can be procured from the pool of potential donors. All improvements should focus on decreasing the unacceptably high family refusal rates.

Prediction Model for Timing of Death in Potential Donors After Circulatory Death (DCD III): Protocol for a Multicenter Prospective Observational Cohort Study.

BACKGROUND: Controlled donation after circulatory death (cDCD) is a major source of organs for transplantation. A potential cDCD donor poses considerable challenges in terms of identification of those dying within the predefined time frame of warm ischemia after withdrawal of life-sustaining treatment (WLST) to circulatory arrest. Several attempts have been made to develop models predicting the time between treatment withdrawal and circulatory arrest. This time window determines whether organ donation can occur and influences the quality of the donated organs. However, the selected patients used for these models were not always restricted to potential cDCD donors (eg, patients with cancer or severe infections were also included). This severely limits the generalizability of those data. OBJECTIVE: The objectives of this study are the following: (1) to develop a model predicting time to death within 60 minutes in potential cDCD patients; (2) to validate and update previous prediction models on time to death after WLST; (3) to determine timing and patient characteristics that are associated with prognostication and the decision-making process that leads to initiating end-of-life care; (4) to evaluate the impact of timing of family approach on organ donation approval; and (5) to assess the influence of variation in WLST processes on postmortem organ donor potential and actual postmortem organ donors. METHODS: In this multicenter observational prospective cohort study, all patients admitted to the intensive care unit of 3 university hospitals and 3 teaching hospitals who met the criteria of the cDCD protocol as defined by the Dutch Transplant Foundation were included. The target of enrolment was set to 400 patients. Previously developed models will be refitted in our data set. To further update previous prediction models, we will apply least absolute shrinkage and selection operator (LASSO) as a tool for efficient variable selection to develop the multivariable logistic regression model. RESULTS: This protocol was funded in August 2014 by the Dutch Transplant Foundation. We expect to have the results of this study in July 2020. Patient enrolment was completed in July 2018 and data collection was completed in April 2020. CONCLUSIONS: This study will provide a robust multimodal prediction model, based on clinical and physiological parameters, that can predict time to circulatory arrest in cDCD donors. In addition, it will add valuable insight in the process of WLST in cDCD donors and will fill an important knowledge gap in this essential field of health care. TRIAL REGISTRATION: ClinicalTrials.gov NCT04123275; https://clinicaltrials.gov/ct2/show/NCT04123275. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/16733.

Family overrule of registered refusal to donate organs.

It is well known that families frequently overrule the wishes of dying patients who had previously expressed a wish to donate their organs. Various strategies have been suggested to reduce the frequency of these 'family overrules'. However, the possibility of families overruling a patient's registered decision not to donate has not been discussed in the medical literature, although it is legally possible in some countries. In this article, we provide an ethical analysis of family overrule of a relative's refusal to donate, using the different jurisdictions of the UK, Switzerland, Germany and the Netherlands to provide some context. Despite some asymmetries between overruling consent and overruling refusal, there are some cases in which donation should proceed despite a recorded refusal to do so.