Family Refusal Research Articles

A Semi-Centralized Retrieval Center Model

Introduction Québec has a population of 8 million dispersed over 1,677,000 km2 (mostly concentrated in 2 metropolitan areas). Over 70 hospitals serve as deceased donor identification centers. A semi-centralized system of dedicated retrieval hospitals was established, and 9 hospitals were designated as retrieval centers (including the transplant centers). Since 2013, a pilot project of dedicated intensive care, operating room and physician resources to facilitate the functioning of the system is underway at a 1 site. This report represents an analysis of 5 years of system performance since this reorganization. Methods Data on system performance were obtained from the ODO database from the years 2012-2016. Indicators reported include: number of donors, of retrieved and transplanted organs, the average number of organs transplanted per donor, adjusted for donor age and extended criteria. Results Over a 5-year period, the annual number of organ donors increased by 43% (120 to 172). Of the 781 donors, 79.8 % (623) were retrieved in 4 high volume hospitals (≥20 donors/year), while 20.2% (158) were retrieved in 14 hospitals (≤19 donor/year). 3 hospitals achieved rates of ≥ 4 organs per donor. 1 low volume site (average of 6-9 donors/year) achieved a mean of 3.94 organs per donor. During this time, family refusal of consent decreased by 30%. An increasing number of organ retrievals are happening at low volume sites (≤5 donors/year, from 2 to 8). This semi-centralized organ retrieval model presents several advantages: the development of local expertise in donor maintenance and retrieval; support for teaching and training; commitment of the donation and transplant centers; sustained engagement of local teams (ICU, ER, OR, etc.); the development of a local culture of organ donation; and the ability to count on centers of excellence with regional/supraregional mandates. Several challenges exist: maintaining the flexibility to retrieve outside of the designated hospitals when required (e.g. DCD, family refusal of transfer); developing the culture of organ donation outside of the designated retrieval hospitals. Conclusion In the Québec system, this semi-centralized model has led to improvement in several metrics, including increased numbers of donors and numbers of organs retrieved per donor, while recognizing and supporting the contributions of lower volume centers. An additional benefit is the system-wide development of the culture of organ donation.

A Global Strategy to Increase Organ Donation at Hospital and Jurisdictional Levels

Introduction In collaboration with the Québec Hospital Association, Transplant Québec published the Organizational Framework for Organ Donation and Tissue Donation Services as a reference to provide hospitals a structured approach to develop more effective organ donation and tissue donation services. Administrators, physicians and health professionals, supported by the ODO, are the key stakeholders able to improve the culture of organ and tissue donation in an institution. Improved performance will better meet the needs of patients waiting for a transplant. Methods The Framework and tools were created in phases over 5 years: a Standardized Organ Donation Procedure (SODP); an Audit System based on International Classification of Deceases (version 10) implemented with the help of hospital archivists and Transplant Québec donor coordinators (4 indicators); all linked to hospital accreditation (Accreditation Canada), quality processes and online educational materials. The key components of the Framework will be presented and modelling of the approach will be discussed in relation to improving the number of donors and number of organs. Commitment, defined roles and responsibilities, specific procedures for organ donation and tissue donation, and the education of clinical teams are essential elements. Results Beginning in 2012, donor referrals increased by 34 % and family refusals decreased by 30 %. During this period, the number of donors increased from 120 to 172 a year, while the total number of transplants rose by 50%. Additionally, the number of DCD donors increased by 400%. Over 5 000 health professionals (mostly critical care) completed online education on the SODP. The number of hospitals using the Audit system increased from 12 to 35. Future gains and next steps will be considered. The role of the ODO in sustaining and moving change forward is crucial to these improved results. Conclusion There remains untapped potential to improve organ donation from the administrative and clinical perspectives at both the hospital and system levels. Our approach demonstrates the effectiveness of providing standardized guidance for hospital administrators combined with educational resources for health care professionals and an audit system in improving performances. The 5-year trend of these improvements highlights the sustainability of the interventions for improvement of a stronger organ donation culture in institutions. Association québécoise des établissements de santé et de services sociaux.

EXPERIÊNCIAS DE FAMILIARES DIANTE DA POSSIBILIDADE DE DOAR ÓRGÃOS E TECIDOS PARA TRANSPLANTES

Este artigo tem como objetivo realizar uma revisão de literatura de textos e livros que discutem os fatores que envolvem a decisão sobre doação de órgãos e tecidos para transplantes. Foram encontrados 38 artigos relacionados ao tema, publicados nos anos 2000 a 2015 e 12 artigos publicados em livros impressos. Desses, foram considerados oito artigos e um livro que representam a experiência da família no processo de doação. Durante a pesquisa para a revisão, foi constatada a concentração da produção científica de textos e pesquisas sobre o tema no estado de São Paulo. A publicação deste artigo reveste-se de grande importância devido às limitações e à incipiência de pesquisas e publicações acadêmicas sobre o tema para o estado da Bahia, que apresentou, em 2016, uma taxa de 62% de negativa familiar para doação de órgãos e tecidos para transplantes.

Approach to growth hormone therapy in children with chronic kidney disease varies across North America: the Midwest Pediatric Nephrology Consortium report

BackgroundGrowth impairment remains common in children with chronic kidney disease (CKD). Available literature indicates low level of recombinant human growth hormone (rhGH) utilization in short children with CKD. Despite efforts at consensus guidelines, lack of high-level evidence continues to complicate rhGH therapy decision-making and the level of practice variability in rhGH treatment by pediatric nephrologists is unknown.MethodsCross-sectional online survey electronically distributed to pediatric nephrologists through the Midwest Pediatric Nephrology Consortium and American Society of Pediatric Nephrology.ResultsSeventy three pediatric nephrologists completed the survey. While the majority (52.1%) rarely involve endocrinology in rhGH management, 26.8% reported that endocrinology managed most aspects of rhGH treatment in their centers. The majority of centers (68.5%) have a dedicated renal dietitian, but 20.6% reported the nephrologist as the primary source of nutritional support for children with CKD. Children with growth failure did not receive rhGH most commonly because of family refusal. Differences in initial work-up for rhGH therapy include variable use of bone age (95%), thyroid function (58%), insulin-like growth factor-1 (40%), hip/knee X-ray (36%), and ophthalmologic evaluation (7%). Most pediatric nephrologists (95%) believe that rhGH treatment improves quality of life, but only 24% believe that it improves physical function; 44% indicated that rhGH improves lean body mass.ConclusionsThere is substantial variation in pediatric nephrology practice in addressing short stature and rhGH utilization in children with CKD. Hence, there may be opportunities to standardize care to study and improve growth outcomes in short children with CKD.

Editors' Note

Editors' Note: In China, the most common reason for eligible patients with acute strokes to not receive tissue plasminogen activator is patient or family refusal, while in the United States, it is mild or resolving symptoms. Hu et al. and article authors Messé and Schwamm discuss possible reasons for this difference. In reference to “Therapeutic coma for status epilepticus: Differing practices in a prospective multicenter study,” Dr. Sethi states that since the study showed that therapeutic coma in status epilepticus resulted in an increased length of stay and associated costs with no change in mortality, the recommendation to follow published evidence-based guidelines in the treatment of status epilepticus should remain in place, with the use of therapeutic coma considered on a case-by-case basis. Authors Alvarez et al. agree. —Megan Alcauskas, MD, and Robert C. Griggs, MD Editors' Note: In China, the most common reason for eligible patients with acute strokes to not receive tissue plasminogen activator is patient or family refusal, while in the United States, it is mild or resolving symptoms. Hu et al. and article authors Messé and Schwamm discuss possible reasons for this difference.

Feasibility of a clinic-based central line care teach-back program for pediatric oncology families.

183 Background: Pediatric oncology (PO) patients with central lines (CLs) are at high risk for CL associated bloodstream infections (CLABSI), which increase morbidity, mortality, and costs. A large portion of ambulatory CL care in the home is provided by families who often have limited opportunities to develop the needed skills and adhere to best practice line care. Methods: A pilot quality improvement initiative was undertaken from 5/2015-6/2016 to develop a coaching program for families to demonstrate external CL care with a nurse during a routine clinic visit (teach-back), either on a simulation model or the patient. Tests of change were implemented to add teach-backs during routine clinic visits and ensure teach-back documentation in the medical record. Initial steps included assessing family interest in teach-backs by conducting surveys about CL care at home and unstructured incorporation into routine care by existing clinic nursing staff. After assessment of the pilot phase, targeted interventions started April 2016 including dedicated staff for scheduling, tracking, and performing teach-backs during routine clinic visits; culture change including an expectation that all families would participate and on-going staff education about the program; language change to increase participation by avoiding family perception of being tested; and incentives (gift-card raffle) for nurses to provide coaching. Results: Before April 2016, less than 25% of families participated due to a combination of family refusal; lack of nursing availability, space, or time; and inability to approach prior to line removal. In April 2016, 52% of families participated, reaching 90% by June 2016. Informal feedback from both staff and patient/family participants suggested increased job satisfaction by nurses and wide acceptance by all. In addition, many families participated in multiple teach-back sessions to improve line care skills. Conclusions: A CL teach-back program in a busy ambulatory PO clinic is feasible, but requires dedicated resources and culture change. Ongoing improvements are in place to ensure sustainability of the program and measure the impact on ambulatory CLABSI rate and family distress and line care skills.

Process and barriers to organ donation and causes of brain death in northeast of Iran

IntroductionOrgan transplantation is the treatment of choice for some diseases. However, the need for cadaveric organ donation has either plateaued or is on a decreasing trend in some countries, especially in developed ones. In this study, we aimed to identify the barriers to organ donation in brain dead patients, who were referred to the organ procurement organizations (OPO) in northeast Iran.MethodsIn this cross-sectional study during 2006 to 2013, data were collected from medical records of brain dead patients. Demographic information, cause of brain death, the process of obtaining informed consent, and the reasons for declining organ donation were obtained from the OPO records. The data were analyzed using chi-square test by SPSS 13 software.ResultsOf 1034 brain dead patients, 751 cases (72.6%) were eligible for organ donation, and, ultimately, 344 cases underwent organ donation. The rate of organ donation increased during the course of the study; medical and legal reasons as well as family refusal to authorize donation were the main barriers to the process.ConclusionBased on the pattern of mortality, the need for living donors in developing countries, such as Iran and other countries in the Mediterranean region, can be reduced by improving the quality of healthcare, efficient identification of brain death, and obtaining consent with appropriate strategies.

P125 Rapid increase in pan-treatment refractory Crohn's disease after transition to adult services: a regional cohort study

Background: Inflammatory bowel disease (IBD) presents in childhood in up to 15% of cases. Paediatric onset IBD (PIBD) has a more extensive and dynamically changing phenotype and a faster rising incidence than adult-onset IBD. We aimed to evaluate rates of treatment refractory disease at and then following transition to adult services. Methods: A prospective PIBD database identified a cohort of all patients discharged from our regional service since 01/01/07. A retrospective study of patients graduating from paediatric to adult IBD services through a transition process, transition event (single joint clinic) or transfer until 31/12/13 was conducted with post transfer follow-up (FU) data at a minimum of 1 year to last adult FU (LAFU). Pan-treatment exposure (PTE) was defined as exposure to all of azathioprine (AZA) or mercaptopurine (MP), methotrexate (MTX), infliximab (IFX) and adalimumab (ADA). Pan-treatment refractory (PTR) disease as those refractory (primary non-response [PNR], loss of response [LOR] or intolerance) to all of these therapies. We used the Montreal classification to describe disease location (L) and behaviour (B) phenotypes. Psychological co-morbidity was defined as a formal psychiatric diagnosis, regular psychiatry/psychology input (or intention for this if repeated family refusal), documented anxiety or depression and deliberate self-harm. Results: 138 patients graduated to adult services, 69% (95/138) had Crohn's disease (CD); 59% (56/95) male, 76% (72/95) with extensive disease (L3 or L3+L4) and 22% (21/95) B2 or B3 disease at time of transfer. Median (IQR) age at transfer 17.8 years (17.3, 18.4) and median (IQR) disease duration at transfer 5.4 years (4.6, 7.6). Median (IQR) length of FU post-transfer was 3.3 years (2.1, 5.1). 12% (11/95) had PTE with 4% (4/95) having PTR disease by time of transfer. PTE rates increased significantly to 26% (21/82) p=0.009 at LAFU and PTR disease to 18% (15/82) p=0.003; 13 patients lost to follow-up. 90% (19/21) of those with PTE had extensive disease and 48% (10/21) had B2 or B3 disease by LAFU. 80% (12/15) patients with PTR disease required bowel resection or a defunctioning stoma by LAFU, compared with 37% (30/82) of the whole CD cohort p=0.002. 24% (5/21) of those with PTE had significant psychological co-morbidity by LAFU. Conclusions: Our novel data show that pan-treatment exposure in paediatric-onset CD is already significant by time of transfer to adult services and continues to increase to affect 26% of this regional cohort within a relatively short period of adult follow-up. 18% of paediatric-onset CD patients have failed all medical treatments by LAFU and 71% with PTE require resectional or defunctioning surgery to manage disease.

Domesticating Organ Transplant: Familial Sacrifice and National Aspiration in Mexico by Megan Crowley-Matoka

Reviewed by: Domesticating Organ Transplant: Familial Sacrifice and National Aspiration in Mexico by Megan Crowley-Matoka Cristina T. Bejarano Megan Crowley-Matoka, Domesticating Organ Transplant: Familial Sacrifice and National Aspiration in Mexico. Durham: Duke University Press, 2016. 336pp. In Domesticating Organ Transplant, Megan Crowley-Matoka presents the reader with a seemingly innocuous statistic: that over 80 percent of all kidney transplants in Mexico are performed using organs from living, related donors (33). Indeed, she demonstrates how it is oftentimes a source of national pride, given that organ donations from family members make transplantation possible in a place where the availability of cadaveric organs, for complex reasons, is limited. Yet, what this superbly researched and thorough ethnography effectively shows is that living, related donation problematically goes unquestioned and unexamined in Mexico, in large part, because it "meshes seamlessly with long-standing cultural logics, social hierarchies, and modes of everyday survival" (60). She highlights, for instance, that women are far more likely to donate a kidney than receive one, which is a fact that can render structural disparities invisible in a society where women are often assumed to be self-sacrificing. The discursive feminization and familialization of transplantation in Mexico not only enables transplantation by making it culturally legible and ethically permissible, it can also enable a "medicalized violence of stratified survival" (55). This is an important and timely book particularly given that living donation is increasingly being promoted and practiced worldwide, and it teaches us that the kinds of bodies that are rendered appropriate and available for transplantation in each context should not be taken for granted. The book is comprised of an introduction and six chapters, which are divided evenly into three parts, followed by a short conclusion. It is based [End Page 525] on ethnographic research conducted at two public hospitals in the city of Guadalajara over a 12-year period from 1998 to 2010. Chapter 1 demonstrates how idealized notions of the "strong" Mexican family as well as the feminized iconic donor render transplantation familiar and culturally commonsensical in ways that problematically situate the practice of living, related donation outside the realm of ethical concerns. Through careful examination of transplant records, Crowley-Matoka underscores how these idealized notions of the "strong" Mexican family and feminized iconic donor among transplant professionals, patients, and family members do not adequately account for the complex and uneven ways organs move from one family member to another. By meticulously teasing out the data on hundreds of donors and recipients in the transplant programs, she uncovers the unsettling role that structural disparities, economic dependence, familial expectations, and "the everyday, brutal calculus of trying to minimize risk for the family as a whole" (51) play in who gets an organ and who does not. The myriad reasons for the conspicuously low rates of cadaveric organ transplantation in Mexico are addressed in Chapter 2. Based on keen observations of dozens of potential cadaveric organ donation cases, Crowley-Matoka eschews commonplace explanations for the lack of brain-dead donors, such as family refusals. Instead, she explains how putting the brain death concept into actual practice is difficult because it is dependent on "the precise orchestration of human, technical, informational, and political resources" (82), which must come together within a very limited time frame in order for it to be successful. In overburdened, state-run Mexican hospitals, any number of things can derail the cadaveric organ transplantation process—such as faulty equipment, a lack of cooperation from medical staff and/or government officials, a lack of trust between transplant professionals and donor families, and a lack of appropriate legal documentation—long before families are faced with the decision to donate. There is no cure for kidney disease and only three treatment options exist (peritoneal dialysis, hemodialysis, and transplantation). In Mexico, these treatments are not widely available. When they are available, they tend to be very expensive and time-consuming, and demand adherence to a strict diet, require a strong support system, and produce other kinds of health problems like depression and fatigue. In light of all this, Chapter 3 describes how patients with kidney disease in Mexico face a bleak prognosis even when the disease is diagnosed in...

P3.07-020 Implementation of an International Value-Based Standard Set of Outcomes for Lung Cancer Patients in a Brazilian Center: Topic: Other – Geographical Differences

Measurement of value is increasingly important in cancer care, especially in lower-income countries. Grupo COI is a Brazilian private cancer care institution, member of the ICHOM (International Consortium for Health Outcomes Measurement) working group for lung cancer standard set definition. We report here feasibility and results for the first year of implementation. Lung cancer (LC) patients inclusion started on June/2015. Data were prospectively obtained from medical charts and patients interviews. All patients signed an informed consent (IC) and were only included if they would receive entire treatment at our center. ICHOM standard set outcomes included survival, complications during or within six months of treatment, baseline demographic, clinical, and tumor information and patient-reported quality of life evaluation (EORTC QLQ-C30 and QLQ-LC13). A total of 392 LC patients were admitted at COI, but only 120 patients (30.6%) met inclusion criteria. Main reasons for exclusion were partial cycle of care at COI (64.9%) and any treatment started before IC signature (11.3%). Median follow up was 7.9 months and baseline clinical data are presented in Table 1. Patient reported outcomes (PROs) were obtained from paper and phone calls. PROs assessment deviations were reported in 49 patients (38.5%) and reasons for them were application date error (63.2%) and patient or family refusal (36.7%). Cost data are being registered for future analysis.Table 1Baseline Clinical and Demographic CharacteristicsMedian age - years (variation)68 (36 – 91)GenderMale57 (47%)Female63 (52%)Educational LevelPrimary21 (17%)Secondary36 (30%)Tertiary63 (52%)Performance status0-1101 (84%)26 (5%)3-40Non specified13 (10%)HistologyAdenocarcinoma66 (55%)Squamous-cell carcinoma29 (24%)Small cell carcinoma12 (10%)Others13 (10%)StageI-II21 (17%)III29 (24%)IV70 (58%) Open table in a new tab Applying an international value-based outcome standard set at a Brazilian institution is feasible. Based on these first data, improvements on PROs assessment methodology are being considered, like self-report electronic forms. Some inclusion criteria should also be revised to avoid this large number of patients exclusion, in order to reproduce a real-world scenario.

Use of Oral Anticoagulant Therapy in Older Adults with Atrial Fibrillation After Acute Ischemic Stroke.

To explore barriers to anticoagulation in older adults with atrial fibrillation (AF) at high risk of stroke and to identify opportunities for interventions that might increase use of oral anticoagulants (OACs). Retrospective cohort study. Two large community-based AF cohorts. Individuals with ischemic stroke surviving hospitalization (N = 1,405, mean age 79). Using structured chart review, reasons for nonuse of OAC were identified, and 1-year poststroke survival was assessed. Logistic regression was used to identify correlates of OAC nonuse. Median CHA2 DS2 -VASc score was 5, yet 44% of participants were not prescribed an OAC at discharge. The most-frequent (nonmutually exclusive) physician reasons for not prescribing OAC included fall risk (26.7%), poor prognosis (19.3%), bleeding history (17.1%), participant or family refusal (14.9%), older age (11.0%), and dementia (9.4%). Older age (odds ratio (OR) = 8.96, 95% confidence interval (CI) = 5.01-16.04 for aged ≥85 vs <65) and disability (OR = 12.58, 95% CI = 5.82-27.21 for severe vs no deficit) were the most-important independent predictors of nonuse of OACs. By 1 year, 42.5% of those not receiving an OAC at discharge had died, versus 19.1% of those receiving an OAC (P < .001), far higher than recurrent stroke rates. Despite very high stroke risk, more than 40% of participants were not discharged with an OAC. Dominant reasons included fall risk, poor prognosis, older age, and dementia. These individuals' high 1-year mortality rate confirmed their high level of comorbidity. To improve anticoagulation decisions and outcomes in this population, future research should focus on strategies to mitigate fall risk, improve assessment of risks and benefits of anticoagulation in individuals with AF, and determine whether newer anticoagulants are safer in complex elderly and frail individuals.

Evaluating the Impact of Pharmacists on Reducing Use of Sedative/Hypnotics for Treatment of Insomnia in Long-Term Care Facility Residents.

To determine if pharmacist intervention can decrease the use of inappropriate sedative/hypnotics in the elderly population in the long-term care facility setting. A multicenter, prospective chart review of sedative/hypnotic use for insomnia among long-term care facility residents. Eleven regional long-term care facilities in Northeastern Tennessee. Long-term care facility residents older than 65 years of age, with confirmed insomnia diagnoses and no history of seizure or recent psychotropic gradual-dose reduction attempts. Consultant pharmacist recommendations to decrease inappropriate use of sedative/hypnotics. Acceptance rates for discontinuation/tapering of the selected sedative/hypnotics. A total of 36 patients were enrolled in the study based on inclusion/exclusion criteria. Overall, 39 interventions were performed. Gradual dose reductions/ discontinuation of select sedative/hypnotics were accepted for 19 residents (48.7%). Of the other recommendations, 8 (20.5%) were denied and 12 (30.8%) were left unanswered. Primary reasons for denial included family refusal, satisfactory response to current dose, and requirement of increased dose as a result of worsening insomnia. Overall, pharmacist intervention can have a meaningful impact on reducing inappropriate sedative/ hypnotic use in the elderly population through concise, evidence-based recommendations to physicians.

Positive impact of a clinical goal-directed protocol on reducing cardiac arrests during potential brain-dead donor maintenance.

BackgroundThe disproportion between the large organ demand and the low number of transplantations performed represents a serious public health problem worldwide. Reducing the loss of transplantable organs from deceased potential donors as a function of cardiac arrest (CA) may contribute to an increase in organ donations. Our purpose was to test the hypothesis that a goal-directed protocol to guide the management of deceased donors may reduce the losses of potential brain-dead donors (PBDDs) due to CA.MethodsThe quality improvement project included 27 hospitals that reported deceased donors prospectively to the Transplant Center of the State of Santa Catarina, Brazil. All deceased donors reported prospectively between May 2012 and April 2014 were analyzed. Hospitals were encouraged to use the VIP approach checklist during the management of PBDDs. The checklist was composed of the following goals: protocol duration 12–24 hours, temperature > 35 °C, mean arterial pressure ≥ 65 mmHg, diuresis 1–4 ml/kg/h, corticosteroids, vasopressin, tidal volume 6–8 ml/kg, positive end-expiratory pressure 8–10 cmH2O, sodium < 150 mEq/L, and glycemia < 180 mg/dl. A logistic regression model was used to identify predictors of CA.ResultsThere were 726 PBDD notifications, of which 324 (44.6) were actual donors, 141 (19.4 %) CAs, 226 (31.1 %) family refusals, and 35 (4.8 %) contraindications. Factors associated with CA reduction included use of the checklist (odds ratio (OR) 0.43, p < 0.001), maintenance performed inside the ICU (OR 0.49, p = 0.013), and vasopressin administration (OR 0.56, p = 0.04). More than three interventions had association with less CAs (OR 0.19, p < 0.001). After 24 months, CAs decreased from 27.3 % to 14.6 % (p = 0.002), reaching 12.1 % in the following two 4-month periods (p < 0.001). Simultaneous increases in organ recovered per donor and in actual donors were observed.ConclusionsA quality improvement program based on education and the use of a goal checklist for the management of potential donors inside the ICU is strongly associated with a decrease in donor losses and an increase in organs recovered per donor.Electronic supplementary materialThe online version of this article (doi:10.1186/s13054-016-1484-1) contains supplementary material, which is available to authorized users.

Implementation and Sustainability of European Training Program on Organ Donation in Poland: Results and the Impact on Donation Indicators.

Hospital training called ETPOD-Essentials in Organ Donation-was introduced in Poland in 31 hospitals with under-utilized potential of donation. The aim of this study was to assess the effect in hospitals included and not included in program, before and after trainings. The number of potential and effective donors, organs used, and number (%) of family refusals were compared at 10 and in 20 months after the training and in equal periods before. In trained hospitals, the number of potential donors increased (17% in 10 months, 10% in 20 months); in remaining hospitals, donors increased in 5% in both periods. In hospitals included in ETPOD, the number of effective donors increased (2% and 4.5%); in the whole country, donors also increased (5.6% and 2.7%). In ETPOD hospitals, the number of utilized organs increased (14.5% and 8.5%); in the rest, the increase was 3% and 7%. In trained hospitals, family refusals increased from 6.9% to 16.2% and from 8.9% to 10.7%; in the whole country, family refusals decreased from 11.7% to 11% in the short term and increased from 9.6% to 12.1% in the long term. In hospitals involved in the ETPOD program, the increase in organ donation is greater than in the rest of hospitals. Distinct benefit was observed in consent to organ donation.

Transfusion Ethics in a Pediatric Jehovah's Witness Trauma Patient: Simulation Case.

Current ethical practice allows for adult patients with decision-making capacity to refuse blood transfusion, even at the cost of high morbidity or mortality. However, for an adult patient who is of the Jehovah's Witness faith, an unwanted blood transfusion confers a psychospiritual cost to the patient and a financial cost to health care entities. The ethical boundaries are increasingly ambiguous with minors who are members of the Jehovah's Witness faith. This simulation experience intends to identify and address knowledge gaps in the care of minors in an emergent setting using a biomedical ethics framework. This scenario provides an immersive simulation experience involving a 12-year-old Jehovah's Witness patient requiring emergent laparotomy for splenic hemorrhage. Patient interview (via simulation manikin with instructor voice) and care handoff take place in an operating room setting. The learner ascertains the patient's and family's refusal of blood products. Induction of general anesthesia results in profound patient hypotension secondary to acute blood-loss anemia. Pulseless electrical activity results if packed red blood cells are not administered. Ethical principles require the learner to impose an unwanted lifesaving therapy on a minor patient over the objections of family members. Secondly, the anesthesia provider must advocate for transfusion on these ethical grounds against a well-meaning but ultimately misguided surgeon who opposes transfusion. An included learner evaluation form based on ACGME core competencies facilitates postsimulation debriefing. Participants were primarily anesthesia residents and fellows. Anecdotally, the residents said that it "felt good to be an attending" and that the simulation helped them appreciate how important conflict resolution skills are in the OR setting. Additionally, faculty appreciated the ability to assess the development of crucial assertiveness skills, with the option of remediating incorrect behavior during the debriefing. This simulation experience provides experience in the emergent medical management of a pediatric trauma patient while also incorporating specific ethical consent issues unique to pediatric and trauma patient populations. Furthermore, this experience develops professionalism skills and practice in assertive patient advocacy.

Practices Around Communication About Organ Donation in Hungary.

One obstacle to organ donation is the high proportion of relatives who refuse consent in presumed-consent countries. The aim of this study was to survey the features of family approaches and to identify those that may have significant impact on family refusals. A 46-item validated questionnaire was designed and used in 2011 and 2012 to investigate factors around all family communications about brain death and organ donation. The data of 188 cases were collected by telephone calls. We asked for the demographic data of donors; place, timing, duration, type, and result of approach; number, age, gender, and qualification of the staff; affinity, gender, age, education, and religion of the involved relatives; and finally the applied method to treat family refusal if it existed. Usually 1 physician talked with 2 relatives. Timing had significant impact on objection rate (χ2= 0.044). Single-discussion meetings (56.38%) were an average 1 hour 13 minutes before the brain death declaration, and they were initiated an average 19 hours 49 minutes before brain death when more than one meeting took place (43.62%). Conversations lasted for 11-22 minutes. Mann-Whitney U test revealed association between duration of donor family communication and occurrence of refusal (P= .021). It was found that the relatives' education level, the number of staff, and the number of family members strongly influenced the occurrence of refusals. The careful preparation, organized direction, and support by intensive care unit staff can decrease the number of family refusals.

Relationships Between Social Attitudes Toward Deceased Organ Donation and the Donation Rates in Poland, a Country With an Opting-out System.

Monitoring of attitudes toward deceased donation gives the general view of the acceptance of this treatment but does not allow for precise prediction of single person's behavior. Consistency of actions and attitudes has many determinants, personal and situational. The idea of this study was to assess and compare relationships between behaviors and attitudes toward postmortem organ donation in single districts and between larger regions of the country (west and east). Indicators calculated for the years 1996-2014 included the number of potential deceased donors (per million population [pmp]/y), the number of objections registered in the refusal registry (pmp), and the number and percentage of family refusals to donation. To assess relationships between variables, statistical and descriptive analyses were used. There were 10,731 potential donor referrals: 10 times more in the most active than in the least active province. Potential donor referrals from the western region were almost twice as high (18.3 pmp/y) as from the east (10.1). In 1,045 cases (9.7%), organs were not used owing to objections of the relatives; this index differed in each province up to 7-fold, but was almost the same in western and eastern regions. Total number of objections listed in the Refusal Registry was 28,725 (748 pmp). This index was different in each district up to 4-fold, but was not distinctly different in west and east regions. No distinct correlation (Pearson test) was found among the 3 assessed variables. Donation in Poland has much geographic differences. There is no common pattern of behavior and attitude toward donation and no correlation between these variables.

Stranded: causes and effects of discharge delays involving non-acute in-patients requiring maintenance care in a tertiary hospital general medicine service.

Objectives The aims of the present study were to identify causes of prolonged discharge delays among non-acute in-patients admitted to a tertiary general medicine service, quantify occupied bed days (OBDs) and propose strategies for eliminating avoidable delays. Methods A retrospective study was performed of patients admitted between 1 January 2012 and 31 May 2015 and discharged as non-acute cases requiring maintenance care and who incurred a total non-acute length of stay (LOS) >7 days and total hospital LOS >14 days. Long-stay patients with non-acute LOS ≥28 days were subject to chart review in ascertaining serial causes of discharge delay and their attributable OBDs. Literature reviews and staff feedback identified potential strategies for minimising delays. Results Of the 406 patients included in the present study, 131 incurred long-stays; for these 131 patients, delays were identified that accounted for 5420 of 6033 (90%) non-acute OBDs. Lack of available residential care beds was most frequent, accounting for 44% of OBDs. Waits for outcomes of guardianship applications accounted for 13%, whereas guardian appointments, Public Trustee applications and funding decisions for equipment or care packages each consumed between 4% and 5% of OBDs. Family and/or carer refusal of care accounted for 7%. Waits for aged care assessment team (ACAT) assessments, social worker reports, geriatrician or psychiatrist reviews and confirmation of enduring power of attorney each accounted for between 1% and 3% of OBDs. Of 30 proposed remedial strategies, those rated as high priority were: greater access to interim care or respite care beds or supported accommodation, especially for patients with special needs; dedicated agency officers for hospital guardianship applications and greater interagency collaboration and harmonisation of assessment and decision processes; and formal requests from hospital administrators to patients and family to accept care options and attend mediation meetings. Conclusions Delayed discharge of non-acute maintenance care patients results principally from impaired access to residential care, administrative delays involving external agencies and patient or family refusal of care. Proposed remedial actions require concerted interjurisdictional advocacy. What is known about this topic? Delays in discharge of non-acute patients requiring maintenance care can occur for many reasons and incur inordinately long hospital stays. What does this paper add? The present detailed chart review of 131 long-stay non-acute patients identified causes of serial discharge delays and quantified their prevalence and attributable bed days. Waits for residential care accounted for less than half the bed days, administrative delays involving decisions by agencies external to the hospital accounted for one-quarter and patient or family refusal of care options accounted for one-tenth. Strategies are proposed that may minimise these delays. What are the implications for practitioners? Delayed discharge of non-acute patients requiring maintenance care threatens to consume an ever-increasing proportion of acute hospital bed days. Remedial action is required from stakeholders both within and outside hospitals to reverse this trend.

The Perceptions of Non–Palliative Care Hospitalist Physicians Referring Patients to a Hospital Palliative Care Program

Many hospitalized patients need holistic care, symptom management, advanced care planning, stronger patient-family-provider communication, strategic goals-of-care planning, and improved coordination of care. These services are provided by palliative care teams. Hospitalist physicians are responsible for the oversight of most hospitalized patients and for referring patients to palliative care when needed. Little is known about hospitalist physicians’ perceptions of palliative care services. A qualitative study using an interpretative phenomenological research design was conducted. Six hospitalist physicians were recruited using purposive sampling. Questions focused on assessing their experiences, facilitators, and barriers related to palliative care referrals. Their responses were transcribed and underwent thematic analysis. The findings were as follows: (a) theme 1: when hospitalist physicians want help (subthemes of when they cannot do any more/renegotiating goals of care, need of time to listen, and pain management) and (b) theme 2: barriers to referral (subthemes of family refusal, oncologists, and meaning of “palliative”). The study participants sought palliative care when they needed goals of care clarified, more time for listening to patients and families, and pain management. Barriers to palliative care included biases that some patients’ families and other physicians may have about the goals and meaning of palliative care.

Unrelated hematopoietic stem cell registry and the role of the Hematopoietic Stem Cell Bank.

BackgroundThe hematopoietic stem cell bank has been actively recruiting registrants since 1994. This study systematically reviews its operations and outcomes over the last 20 years.MethodsRetrospective data on a total of 47,711 registrants were reviewed. Relevant data were processed using PASW Statistics for Windows, version 18.0.ResultsAs of 2013, the Korean Network for Organ Sharing database contained 265,307 registrants. Of these, 49,037 (18%) registrants committed to hematopoietic cell donation from 1994 to 2013. Fifty-seven percent of the registrants were men, and 43% were women. The reasons for opting out of the registry included refusal to donate (70%), family refusal (28%), and others (2%). The donation willingness of registrants was significantly higher than those who refused to receive a mail to confirm their continued enrollment (χ2=6.103, P=0.013). The bank successfully coordinated a total of 512 donors among newly matched donors from 1995 to 2013, of which the bone marrow and peripheral blood stem cell accounted for 40.8% and 59.2% of the total donations, respectively.ConclusionOur recruitment activities focus on promoting voluntary registration and the importance of updating personal contact information. We expect that these data may be useful for diverse studies and demonstrate the positive impacts on the donation program.