Ethical issues in neonatal intensive care and physicians' practices: a European perspective

An international project (EURONIC) was carried out to explore the end-of-life decision-making process in a large, representative sample of neonatal intensive care units (NICUs) in eight western European countries: France, Germany, Great Britain, Italy, Luxembourg, the Netherlands, Spain and Sweden. Structured questionnaires were used to record data on NICU organization and policies, and to survey staff views and practices regarding ethical decision-making. One hundred and twenty-two NICUs were recruited by census or random sampling (response rate 86%); 1235 physicians and 3115 nurses completed the staff questionnaire (response rates 89 and 85%, respectively). This paper focuses on the physicians' answers. In all countries but Italy, most physicians reported having been involved at least once in setting limits to intensive care because of a baby's incurable condition and/or poor neurological prognosis. Adopted strategies varied between countries. Practices such as the continuation of current treatment without intensifying it and the withholding of emergency manoeuvres appeared widespread. In contrast, the frequency of doctors reporting withdrawal of mechanical ventilation was highest in the Netherlands (93%), Sweden (91%) and the Great Britain (88%), intermediate in France and Germany, and lowest in Spain and Italy (34 and 21%, respectively). CONCLUSION: Ethically problematic clinical cases are approached differently in the various countries. The findings of this study may provide an opportunity for physicians to review their practices critically, in light of how other colleagues proceed, and foster an open discussion about these difficult issues.     

Treatment choices for extremely preterm infants: an international perspective

OBJECTIVE: To compare treatment choices of neonatal physicians and nurses in 11 European countries for a hypothetical case of extreme prematurity (24 weeks' gestational age, birth weight of 560 g, Apgar score of 1 at 1 minute). STUDY DESIGN: An anonymous, self-administered questionnaire was completed by 1401 physicians (response rate, 89%) and 3425 nurses (response rate, 86%) from a large, representative sample of 143 European neonatal intensive care units. Italy, Spain, France, Germany, the Netherlands, Luxembourg, Great Britain, Sweden, Hungary, Estonia, and Lithuania participated. RESULTS: Most physicians in every country but the Netherlands would resuscitate this baby and start intensive care. On subsequent deterioration of clinical conditions caused by a severe intraventricular hemorrhage, attitudes diverge: most neonatologists in Germany, Italy, Estonia, and Hungary would favor continuation of intensive care, whereas in the other countries some form of limitation of treatment would be the preferred choice. Parental wishes appear to play a role especially in Great Britain and the Netherlands. Nurses are more prone than doctors to withhold resuscitation in the delivery room and to ask parental opinion regarding subsequent treatment choices. CONCLUSION: An extremely premature infant is regarded as viable by most physicians, whereas after deterioration of the clinical conditions decision-making patterns vary according to country. These findings have implications for the ethical debate surrounding treatment of infants of borderline viability and for the interpretation and comparison of international statistics.     

Should euthanasia be legal? An international survey of neonatal intensive care units staff

OBJECTIVE: To present the views of a representative sample of neonatal doctors and nurses in 10 European countries on the moral acceptability of active euthanasia and its legal regulation. DESIGN: A total of 142 neonatal intensive care units were recruited by census (in the Netherlands, Sweden, Hungary, and the Baltic countries) or random sampling (in France, Germany, Italy, Spain, and the United Kingdom); 1391 doctors and 3410 nurses completed an anonymous questionnaire (response rates 89% and 86% respectively). MAIN OUTCOME MEASURE: The staff opinion that the law in their country should be changed to allow active euthanasia "more than now". RESULTS: Active euthanasia appeared to be both acceptable and practiced in the Netherlands, France, and to a lesser extent Lithuania, and less acceptable in Sweden, Hungary, Italy, and Spain. More then half (53%) of the doctors in the Netherlands, but only a quarter (24%) in France felt that the law should be changed to allow active euthanasia "more than now". For 40% of French doctors, end of life issues should not be regulated by law. Being male, regular involvement in research, less than six years professional experience, and having ever participated in a decision of active euthanasia were positively associated with an opinion favouring relaxation of legal constraints. Having had children, religiousness, and believing in the absolute value of human life showed a negative association. Nurses were slightly more likely to consider active euthanasia acceptable in selected circumstances, and to feel that the law should be changed to allow it more than now. CONCLUSIONS: Opinions of health professionals vary widely between countries, and, even where neonatal euthanasia is already practiced, do not uniformly support its legalisation.     

Parental involvement and kangaroo care in European neonatal intensive care units: A policy survey in eight countries

OBJECTIVE:: To compare, in a large representative sample of European neonatal intensive care units, the policies and practices regarding parental involvement and holding babies in the kangaroo care position as well as differences in the tasks mothers and fathers are allowed to carry out. DESIGN:: Prospective multicenter survey. SETTING:: Neonatal intensive care units in eight European countries (Belgium, Denmark, France, Italy, The Netherlands, Spain, Sweden, and the United Kingdom). PATIENTS:: Patients were not involved in this study. INTERVENTIONS:: None. MEASUREMENTS AND MAIN RESULTS:: A structured questionnaire was mailed to 362 units (response rate 78%); only units with ≥50 very-low-birth-weight annual admissions were considered for this study. Facilities for parents such as reclining chairs near the babies' cots, beds, and a dedicated room were common, but less so in Italy and Spain. All units in Sweden, Denmark, the United Kingdom, and Belgium reported encouraging parental participation in the care of the babies, whereas policies were more restrictive in Italy (80% of units), France (73%), and Spain (41%). Holding babies in the kangaroo care position was widespread. However, in the United Kingdom, France, Italy, and Spain, many units applied restrictions regarding its frequency (sometimes or on parents request only, rather than routinely), method (conventional rather than skin-to-skin), and clinical conditions (especially mechanical ventilation and presence of umbilical lines) that would prevent its practice. In these countries, fathers were routinely offered kangaroo care less frequently than mothers (p < .001) and less often it was skin-to-skin (p < .0001). CONCLUSIONS:: This study showed that, although the majority of units in all countries reported a policy of encouraging both parents to take part in the care of their babies, the intensity and ways of involvement as well as the role played by mothers and fathers varied within and between countries.     

Parental visiting, communication, and participation in ethical decisions: a comparison of neonatal unit policies in Europe.

AIM: To compare neonatal intensive care unit policies towards parents' visiting, information, and participation in ethical decisions across eight European countries. METHODS: One hundred and twenty three units, selected by random or exhaustive sampling, were recruited, with an overall response rate of 87%. RESULTS: Proportions of units allowing unrestricted parental visiting ranged from 11% in Spain to 100% in Great Britain, Luxembourg and Sweden, and those explicitly involving parents in decisions from 19% in Italy to 89% in Great Britain. Policies concerning information also varied. CONCLUSIONS: These variations cannot be explained by differences in unit characteristics, such as level, size, and availability of resources. As the importance of parental participation in the care of their babies is increasingly being recognised, these findings have implications for neonatal intensive care organisation and policy.     

Parents, siblings and grandparents in the Neonatal Intensive Care Unit A survey of policies in eight European countries

Objective:  To describe policies towards family visiting in Neonatal Intensive Care Units (NICU) and compare findings with those of a survey carried out 10 years earlier.
Methods:  A questionnaire on early developmental care practices was mailed to 362 units in eight European countries (Sweden, Denmark, the UK, the Netherlands, Belgium, France, Spain and Italy). Of them 78% responded, and among those responded, 175 reported caring for at least 50 very low birth weight infants every year and their responses were analysed further.
Results:  A majority of all units allowed access at any time for both parents. This was almost universal in northern Europe and the UK, whereas it was the policy of less than one-third of NICU in Spain and Italy, with France in an intermediate position. Restrictions on visiting of grandparents, siblings and friends, as well as restricting parents' presence during medical rounds and procedures followed the same pattern. A composite visiting score was computed using all the variables related to family visiting. Lower median values and larger variability were obtained for the southern countries, indicating more restrictive attitudes and lack of national policy.
Conclusions:  The presence of parents and other family members in European NICUs has improved over a 10-year period. Several barriers, however, are still in place, particularly in the South European countries.     

Organization of organ transplantation in France]

France was in tenth position in the field of kidney transplant in Europe in 1982, and is currently at the top of western countries for all transplant activities (per million inhabitants). Cyclosporin A was certainly a favourable factor for liver, heart and lung transplantations. Nevertheless the transplantation activity in France is twice than of Great Britain or Germany for those transplant specialties and the percentage of renal transplantations from living related donors is very low in France: 2.7% versus 30% in others. These data depend on a specific French organization which involves: a presume consent law; an emergency policy with mobile medical rescue teams and polyvalent intensive care units; a three level France Transplant organization: national, regional and local; hospital physicians as regional transplant coordinators who are independent from transplant teams; waiting list telematic computer system which promotes priorities: high emergencies, high-sensitized and pediatric recipients.     

Prevalence and indications for video recording in the health care setting in North American and British paediatric hospitals

BACKGROUND:

Health care video recording has demonstrated value in education, performance assessment, quality improvement and clinical care.

METHODS:

A survey was administered to paediatric hospitals in Great Britain, Canada and the United States. Heads of departments or delegates from six areas (emergency departments [EDs], operating rooms, paediatric intensive care units [PICUs], neonatal intensive care units [NICUs], simulation centres and neuroepilepsy units) were asked 10 questions about the prevalence, indications and process issues of video recording.

RESULTS:

Seventy hospitals were surveyed, totalling 307 clinical areas. The hospital response rate was 100%; the rate for clinical departments was 65%. Sixty-six hospitals (94%) currently use video recording. Video recording was used in 62 of 68 (91%) operating rooms; 36 of 69 (52%) PICUs; 35 of 67 (52%) NICUs; 12 of 65 (19%) EDs; seven of eight (88%) neuroepilepsy units and 13 of 14 (93%) simulation centres. Education was the most common indication (112 of 204 [55%]). Most sites obtained written consent. Since the introduction of more strict privacy legislation, 11 of 65 (17%) EDs have discontinued video recording.

CONCLUSION:

The present study describes video recording practices in paediatric hospitals in North America and Great Britain. Video recording is primarily used for education and most areas have a consent process.     

The EuroPrevall birth cohort study on food allergy: baseline characteristics of 12,000 newborns and their families from nine European countries

It is unclear why some children develop food allergy. The EuroPrevall birth cohort was established to examine regional differences in the prevalence and risk factors of food allergy in European children using gold-standard diagnostic criteria. The aim of this report was to describe pre-, post-natal and environmental characteristics among the participating countries. In nine countries across four major European climatic regions, mothers and their newborns were enrolled from October 2005 through February 2010. Using standardized questionnaires, we assessed allergic diseases and self-reported food hypersensitivity of parents and siblings, nutrition during pregnancy, nutritional supplements, medications, mode of delivery, socio-demographic data and home environmental exposures. A total of 12,049 babies and their families were recruited. Self-reported adverse reactions to food ever were considerably more common in mothers from Germany (30%), Iceland, United Kingdom, and the Netherlands (all 20-22%) compared with those from Italy (11%), Lithuania, Greece, Poland, and Spain (all 5-8%). Prevalence estimates of parental asthma, allergic rhinitis and eczema were highest in north-west (Iceland, UK), followed by west (Germany, the Netherlands), south (Greece, Italy, Spain) and lowest in central and east Europe (Poland, Lithuania). Over 17% of Spanish and Greek children were exposed to tobacco smoke in utero compared with only 8-11% in other countries. Caesarean section rate was highest in Greece (44%) and lowest in Spain (<3%). We found country-specific differences in antibiotic use, pet ownership, type of flooring and baby's mattress. In the EuroPrevall birth cohort study, the largest study using gold-standard diagnostic criteria for food allergy in children worldwide, we found considerable country-specific baseline differences regarding a wide range of factors that are hypothesized to play a role in the development of food allergy including allergic family history, obstetrical practices, pre- and post-natal environmental exposures.     

Factors associated with hand hygiene practices in two neonatal intensive care units

OBJECTIVE: To determine whether hand hygiene practices differ between levels of contact with neonates; to characterize the hand hygiene practices of different types of personnel; and to compare hand hygiene practices in neonatal intensive care units (NICUs) using different products. METHODS: Research assistants observed staff hand hygiene practices during 38 sessions in two NICUs. Patient touches were categorized as touching within the neonates' environment but only outside the Isolette (Level 1), touching within the Isolette but not the neonate directly (Level 2) or directly touching the neonate (Level 3). Hand hygiene practices for each touch were categorized into five groups: cleaned hands and new gloves; uncleaned hands and new gloves; used gloves; clean hands and no gloves; uncleaned hands and no gloves. RESULTS: Research assistants observed 1472 touches. On average each neonate or his or her immediate environment was touched 78 times per shift. Nurses (P = 0.001), attending physicians (P = 0.02) and physicians-in-training (P = 0.03) were more likely to use appropriate practices during Level 3 touches, but only 22.8% of all touches were with cleaned and/or newly gloved hands. The mean number of direct touches by staff members with cleaned hands was greater in the NICU using an alcohol-based hand rub than in the NICU using antimicrobial soap (P < 0.01). CONCLUSIONS: Hand hygiene was suboptimal in this high risk setting; administrative action and improved products may be needed to assure acceptable practice. In this study use of an alcohol-based product was associated with significantly improved hand hygiene and should be encouraged, as recommended in the new CDC hand hygiene guideline.     

Management of ADHD in children across Europe: patient demographics, physician characteristics and treatment patterns

This study was a retrospective chart review performed to examine and describe physician practice patterns in managing attention deficit/hyperactivity disorder (ADHD) across Europe. Physicians treating ADHD in the UK, France, Germany, Italy, the Netherlands and Spain were recruited. Each physician abstracted medical records of five patients (aged 6–17 years at time of review) with a documented diagnosis of ADHD made between January 2004 and June 2007. Data provided by the physician via the abstraction included (a) physician characteristics, (b) patient characteristics, (c) ADHD diagnosis and (d) ADHD outcomes (adherence, symptom control and satisfaction). A total of 779 patients met study inclusion criteria. In the overall population, patients’ mean (SD) age at time of diagnosis was 8.9 (2.6) years. The predominant treatment choice was long-acting methylphenidate, which was prescribed to more than 56 % of patients. According to physicians, only 30.8 % of patients showed ‘complete symptom control’ on current treatment and only 31.8 % of physicians reported being ‘very satisfied’ with their patients’ current treatment. Physicians’ assessments of complete symptom control and physician satisfaction with treatment were low, indicating unmet needs with current ADHD management in Europe.     

Management of outbreaks in neonatal intensive care units

Outbreaks in neonatal intensive care units (NICUs) have disastrous consequences for neonates and raise enormous concerns in staff, altering usual practice patterns of the NICU. Our objective was to perform a systematic analysis for gaining insights into the control and prevention of NICUs outbreaks. Epidemiology, risk factors and outcomes are reviewed.     

Epidemiology of HIV infection in children in Europe

In Europe the Human Immunodeficiency Virus (HIV) epidemic in children is an important public health problem. Reliable epidemiological information varies widely among countries, and there is no standard method to document the pandemia. By September 1992, a total of 81,849 AIDS cases were identified. France had 21,487, Spain 15,678 and Italy 14,784 (63% of all cases). The highest rate per 100,000 inhabitants occurred in Spain (88.9), France had 70.6 and Italy 63.5. The numbers of HIV⁺ newborns (NB) in Spain were 4673, in Italy 2,693, in Belgium 368, in Scotland 79 and in Holland 11. The highest rate of HIV⁺ NBs per 100,000 inhabitants occurred in Spain (120.1), the lowest in Holland (0.73). In Western Europe, 82% of all cases were due to vertical transmission. Mothers'venous drug use was the most common form of HIV transmission.     

Neonatal respiratory support strategies in the intensive care unit: an Italian survey

We carried out a survey of current practices of neonatal respiratory support in neonatal intensive care units (NICUs) in Italy with the aim of comparing the current reality with evidence from the literature. We sent a questionnaire by email to the 103 level III neonatal units in Italy. There was a 61 % (73/120) response rate to the questionnaire. We found that synchronized intermittent positive pressure ventilation is mostly used in infants in the acute phase of respiratory distress syndrome (RDS), while the majority of the units prefer volume-targeted ventilation for those in the weaning phase. Nasal continuous positive airway pressure is the most commonly used non-invasive mode of respiratory support, both in the acute and post-extubation phase of RDS. Surfactant is mainly given as rescue treatment. Infants receive caffeine before extubation and analgesia under mechanical ventilation, while post-natal steroids are given after the first week of life in the majority of the units. In conclusion, respiratory support strategies in Italian NICUs are frequently evidence-based. However, since there are areas where this does not occur, we suggest that focused interventions take place on these areas to help improve clinical practice and increase their adherence to evidence-based medical criteria.     

Risk indicators for hearing loss in infants treated in different Neonatal Intensive Care Units

Aim: To assess which infants’ characteristics and specialized procedures are risk indicators for unilateral or bilateral hearing loss (HL) and to evaluate whether these risk indicators are associated with variation in prevalence of HL between Neonatal Intensive Care Units (NICUs). Methods: For 2002–2005, data from the NICU hearing screening database in the Netherlands were matched with the national neonatology database in which all NICU infants with their patient characteristics and specialized procedures are registered. Multivariate logistic regression analyses were performed to assess risk indicators for HL and to explain differences in prevalence rates between NICUs. Results: A total of 10 830 infants were available for analyses. The prevalence of HL was 1.8% and ranged from 0.7 to 3.7% between NICUs. Infants’ characteristics that significantly increased the risk of HL were the presence of craniofacial anomalies, chomosomal/syndromal anomalies, central nervous system conditions, circulatory system conditions and intra‐uterine infections. The specialized procedures involving ≥12 days of intensive care and high frequency oxygenation ventilation were independent risk indicators for HL. Approximately 20% of the variance can be explained by the studied risk indicators. Differences in prevalence rates between NICUs were slightly reduced after adjustment for these risk indicators. NICUs with the highest prevalence rates of HL were situated in the largest cities in the Netherlands with a mixed population because of immigration. Therefore, ethnicity may be a risk indicator. Conclusions: Several independent risk indicators for HL were found, but they could not explain all differences in prevalence rates of HL between NICUs.     

A national survey of the enteral feeding practices in Canadian neonatal intensive care units

AimNutrition affects the growth and neurodevelopmental outcomes of preterm infants, yet controversies exist about the optimal enteral feeding regime. The objective of this study was to compare enteral feeding guidelines in Canadian neonatal intensive care units (NICUs).MethodThe research team identified key enteral feeding practices of interest. Canadian Neonatal Network site investigators at 30 Level 3 NICUs were contacted to obtain a copy of their 2016 to 2017 feeding guidelines for infants who weighed less than 1,500 g at birth. Each guideline was reviewed to compare recommendations around the selected feeding practices.ResultsFive of the 30 NICUs did not have a feeding guideline. The other 25 NICUs used 22 different enteral feeding guidelines. The guidelines in 40% of those NICUs recommend commencing minimal enteral nutrition (MEN) within 24 hours of birth and maintaining that same feeding volume for 24 to 96 hours. In 40% of NICUs, the guideline recommended that MEN be initiated at a volume of 5 to 10 mL/kg/day for infants born at <1,000 g. Guidelines in all 25 NICUs recommend the use of bovine-based human milk fortifier (HMF), and in 56% of NICUs, it is recommended that HMF be initiated at a total fluid intake of 100 mL/kg/day. Guidelines in only 16% of NICUs recommended routine gastric residual checks. Donor milk and probiotics are used in 76% and 72% of the 25 NICUs, respectively.ConclusionThis study revealed substantial variability in recommended feeding practices for very low birth weight infants, underscoring the need to establish a national feeding guideline for this vulnerable group.     

Reye syndrome

Clinical course, laboratory findings and histopathological features of Reye's syndrome as described. Etiological and pathogenetic aspects are still under discussion although a viral infection preceding Reye's syndrome is a very common finding. Preceding Influenza B, Influenza A and varicella infections were most often seen in the United States. A genetic disposition seems to exists in some cases. Exogenic factors of pathogenetic relevances are aflatoxin, emulging agents, insecticides, paracetamol, acetylsalicylic acid and valproate. In the United States and Great Britain the incidence of Reye's syndrome is about ten times higher than in other European countries, as demonstrated by reports from Spain, Denmark and France. Results of an inquiry in Western Germany on Reye's syndrome between 1983 and 1985 are presented. 99 major pediatric hospitals were included into the study. Clinical data were obtained from 85 hospitals. The incidence of Reye's syndrome in Western Germany during 1983-1985 was 0.04-0.05 cases per 100,000 children under 18 years. 15 cases of Reye's syndrome were reported, i.e. an average of 5 cases per year. 8 children died. 3 patients had been treated with acetylsalicylic acid and 2 patients with paracetamol shortly before the onset of the disease.     

Overgown use for infection control in nurseries and neonatal intensive care units

We surveyed 1824 physicians to determine current newborn nursery (NBN) and neonatal intensive care unit (NICU) gowning procedures and the gowning preferences of NBN and NICU physicians. A total of 712 questionnaires (39.0%) were returned from 453 hospitals. Of the 712 questionnaire respondents, 251 (35.3%) thought that gowns should be worn at all times. However, 319 (72.8%) of the 438 NBNs and 317 (71.6%) of the 443 NICUs surveyed continue to require gowns at all times. The difference between gown preference and practice was statistically significant. Gowns were worn only for handling infants in 96 NBNs (21.9%) and 109 NICUs (24.6%), while 344 physicians (48.3%) preferred this regimen. Gowns were worn in 16 NBNs (3.7%) and 15 NICUs (3.4%) only for isolated infants, but 67 respondents (9.4%) believed this to be the procedure of choice. At our institution, 100 and 300 gowns are worn daily in the NBN and NICU, respectively, at a cost of +0.28 per gown use, generating an estimated yearly expense of +40 880. In addition, the current literature does not support gowning as a means of infection control in this setting.     

The Role of Rehabilitation Specialists in Canadian NICUs: A 21st Century Perspective

Rehabilitation specialists are an integral part of the team in the neonatal intensive care unit (NICU). New approaches to rehabilitation practice in the NICU have evolved over the past decade that aim to promote child health and development. Aims: The aim of this study was to describe the current roles of the occupational therapist (OT), physical therapist (PT) and speech-language pathologist (SLP) in Canadian NICUs as compared to the roles documented in an earlier national survey conducted 15 years ago. Methods: A telephone survey was conducted across Canadian NICUs and each telephone interview was recorded by a research assistant. In total, 42 questionnaires were completed across 25 health care institutions. Results: Eighty percent of the PT, 93.7% of OT and 50% of SLP provided direct services to neonates in the NICU. The results demonstrated that the therapists were involved with case discussion (85.7%), decision-making (97.6%), referrals to other services (97.6%) and discharge planning (97.6%). Splinting (87.5%) and feeding (100%) were most often carried out by OT, whereas chest physiotherapy (65%) and range of motion (100%) were predominantly provided by PT. Changes in the role of rehabilitation specialists over the last decade predominantly included enhanced collaboration with the NICU team, more frequent use of standardized outcome measures and use of interventions supported by evidence. Conclusion: In comparison with results of the previous survey of rehabilitation practices in Canadian NICUs, rehabilitation specialists now have more dedicated time in the NICU and more frequently use standardized measures and apply interventions that are supported by recent scientific studies.     

Forgoing life-sustaining treatments in children: a comparison between Northern and Southern European pediatric intensive care units.

OBJECTIVES: This study was conducted to determine how the decision-making process to forgo life support differs between southern and northern European pediatric intensive care units. DESIGN: Multiple-center, prospective study. SETTING: Thirty-nine pediatric intensive care units: 12 from northern Europe and 27 from southern Europe. PATIENTS: All consecutive deaths were recorded over a 4-month period. Group 1 and group 2 included patients who died in northern and southern pediatric intensive care units, respectively. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Three hundred fifty children were enrolled, 68 in group 1 and 282 in group 2. The decision to forgo life-sustaining treatment was made in 116 children (group 1, n = 32; group 2, n = 84). In both groups, the decision was discussed by caregivers during a formal meeting. The decision to forgo life-sustaining treatment was more often made in northern countries than in southern ones (47% vs. 30%, p =.02). Parents were informed of this decision in 95% of cases in group 1 vs. 68% in group 2 (p =.01). In both groups, the final decision was made by the medical staff. Parents' contributions to the decision-making process did not differ between the two groups according to the practitioners' opinion. The decision was documented in the medical charts in 100% of the cases in group 1 and in 51% of the cases in group 2 (p =.0001). CONCLUSIONS: The decision-making process appears to be similar between northern and southern European countries. The respective contributions of the parents and the medical staff in the final decision itself seem to be identical between northern and southern countries. However, in northern European countries, the level of parents' information about the decision-making process appears higher and the decision is more often documented in the medical chart.