The Journal of Maternal-Fetal and Neonatal Medicine, 2012; 25(7): 984 991 2012 Informa UK, Ltd.

. ISSN 1476-7058 print/ISSN 1476-4954 online DOI: 10.3109/14767058.2011.602442 Ethics in neonatology: a look over Europe Hercilia Guimares1, Gustavo Rocha2, Filipe Almeda1, Marta Brites3, Johannes B. Va n Goudoever4, Francesca Iacoponi5, Carlo Bellieni5 & Giuseppe Buonocore5 1Faculty of Medicine, Porto University, Porto, Portugal, 2So Joo Hospital, Porto, Portugal, 3Catholic University, Porto, Portugal, 4Sophia Children s Hospital, Erasmus Medical Center, Rotterdam, and 5University of Siena, Siena, Italy possible negative effects they may have on the future life of the baby. Survival bears a heavy cost - the Ethics: to recognize the inviolable dignity of the recently born and to always provide the best care possible. Everyday, in the delivery room and in the NICU, some doubts exist and many questions are raised: What is the right thing we must do? Who is going to decide? Advances in perinatal medicine have dramatically improved neonatal survival. End-of-life decision making for newborns with adverse prognosis is an ethical challenge, the ethical issues are controversial and little evidence exists on attitudes and values in Europe. Objective: to assess the attitudes of the neonatal departments in perinatal clinical practice in the hospitals of European countries. Methods: a questionnaire was send to 55 NICUs from 19 European countries Results: Forty five (81.8%) NICUs were Level III. Religion was Christian in 90.7% and we observed that in north countries the religion is more influent on clinical decisions (p = 0.032). Gestational age was considered with no significant difference for clinical investment. North countries consider birth weight (p = 0.011) and birth weight plus gestational age (p = 0.024) important for clinical investment. In north countries ethical questions should not prevail when the decision is made (p = 0.049) and from an ethical point of view, there is no difference between withdraw a treatment and do not initiate the treatment (p = 0.029). More hospitals in south countries administer any analgesia (p = 0.007). When the resuscitation is not successful 96.2% provide comfort care. Conclusion: Our study reveals that cultural and religious differences influenced ethical attitudes in NICUs of the European countries. Key words: Ethics, neonatal palliative care, neonatal intensive care, end-of-life, decision-making Introduction Neonatology is one of the specialties that has immensely benefited from advances in medical technology in the last few decades. Constant advances in perinatal medicine in industrialized countries have given rise to challenging ethical dilemmas.

At the same time as the world continues to witness huge technological and social change, the newly born, at whatever stage of pregnancy birth occurred, face spectacular options for survival. In the last thirty years or so, the survival rate for extremely premature babies has risen dramatically. Currently, more than 80% of these babies survive, even with only 23 weeks of gestation, compared with less than 20% with some chance of survival previously. Recently epidemiological studies compared data on mortality and morbidity among countries [1 4]. But alongside the notable impact of, and excitement generated by this progress there are unavoidable ethical questions concerning the conditions under which these interventions take place, and the What happens if parents do not agree? How can we decide in the best interest of the newborn? In cases of congenital malformation, facing the risk of serious brain deficiency, or other similar problems, what should be done? Is life always better than no life? Should therapeutic investment, intensive and aggressive, and not always able to avoid serious and irreversible damage, proceed unchecked towards survival, whatever the cost? Could there be situations in which, ethically, one should stop, or not even initiate a therapy, allowing the pathology to take its natural course, with excellent end-of-life care-giving, offering comfort and quality time, even if short? These aspects have paralleled the rise of the civil rights movements and wider recognition of individual rights [5 7]. As a result, ethical decision-making has become more complex, involving patients, parents, members of the health care team, and society in general. Between the Law and Religion, where will light find a path so that these dilemmas can be resolved for professionals, patients and families? With this study, we intend to assess, with an ethical eye, the perinatal behaviour in neonatology departments of the hospitals of European countries, observing their attitudes and practices (delivery room and NICUs), as well as the thoughts and feelings that motivate them, so as to promote a meeting of minds on this subject, leading to a wiser approach to the problems facing neonatal life. Material and methods Sample The sample included 55 NICUs from 19 European countries (Belgium, Croatia, Czech Republic, Denmark, Estonia, France, Germany, Greece, Italy, Latvia, Lithuania, Netherlands, Poland, Portugal, Serbia, Slovakia Slovenia, Spain, and Turkey). Questionnaire A questionnaire was sent to the presidents and members of European Societies of Neonatology and Perinatology in January 2010 to assess the practices on neonatal ethics in Level II and Level III NICUS of the countries. Correspondence: Hercilia Guimaraes, Faculty of Medicine, Porto University, Porto , Porugal. E-mail: herciliaguimaraes@gmail.com 984

Neonatal ethics 985 A structured questionnaire including 60 questions was used to collect information on each NICU organization, workload and policies, and to survey attitudes and practices with regard to neonatal ethical decision-making in each NICU. Each participant NICU filled only one questionnaire corresponding to the global practice of the Unit. Some questions admitted more than one answer. Data were presented globally, in percentage, comparing practices and attitudes of participant NICUs. Statistical analysis We divided the countries of the study as north and south , according to their geographical situation in Europe. North Europe: Denmark, Estonia, Lithuania, Latvia, Poland, Netherlands, Belgium, Germany and South Europe: Croatia, Greece, Italy, Portugal, Spain, Turkey, Slovenia, France, Czech Republic, Slovakia, and Serbia. We matched all the results of all the items, of north countries with those of south countries. We analysed the results using the Chi square or Fisher exact test. Results Study population - characterization Out of the 55 NICUs, 10 (18.2%) were Level II and 45 (81.8%) were Level III NICUs. The mean of total number of beds was 28 (7 256), with 10 (4 41) being intensive care beds.Fourteen (25.5%) NICUs were included in a Paediatric Hospital, 36 (65.5%), in a General hospital and 5 (9%) in a Maternity. The Religion was Christian in 49/54 (90.7%) being Catholic in 31/49 (63.3%), Ortodox: 7 (22.5%); Protestant: 6 (19.4%); Islamic: 2/55 (3.7%). Three had no religion. In two NICUs there were two religions, in one NICU, three religions and in one, four religions in the staff. One didn t answer. The Institution has Committee on Ethics for Health in 42/54 (77.8%). Doctors in 42 (100%), 1 has 1 doctor; all others at least 2 doctors; Paediatrician in 35/42 (83.3%); nurses 26/42 (61.9%); nurses with specialization in paediatric care 7/26 (26.9%); lawyer in 31/42 (73.8%); ethicist 13 (30.9%); theologian 17 (40.5%); pharmacist 25 (59.5%); civil community representative in 14 (33.3%); social worker in 1; physiologist in 1; biologist in 1; lab technician in 1; 1 administrator in 1. General ethical attitudes Thirteen out of 55 (23.6%) NICUs consider that religion influences always the decision, influences sometimes in 12 (21.8%) and has

no influence in 30 (54.5%); 41/55 (74.5%) NICUs consider that decision has influence on parent s decisions, influences sometimes in 10/55 (18.2%) and has no influence in 4 (7.3%). Ethical decisions that occur in the professional practice are related to congenital anomalies in 47 (85.5%); severe neurological deficits in 46 (83.6%); treatment in 45 (81.8%); related to extreme prematurity in 43 (78.2%); related to investigation in 27 (49.1%); others in 8 (14.5%). When NICUs face an ethical decision in clinical practice, the proceeding is as followed: the decision is assumed by the service in 34/54 (63%); individually in 17 (31.5%); the case is present to the ethics committee on health in 14 (26%). The participants in the decision are only professionals of the NICU in 22/54 (40.7%); doctors in 51/52 (98.1%); nurses in 27 (50%); parents in 35 (64.8%); external person 8 (14.8%); others 5 (9.3%): social worker, palliative care doctor, ethical person, theologian, religious leader. Before the birth of a risk neonate, the information about bad prognosis is foreseen in 55 (100%). In 48 (87.3%) NICUs, the Obstetrician, and in 32 (58.2%) the Neonatologist were present. In 24 (43.6%) NICUs this information was given by both Obstetrician and Neonatologist. In 2 cases, the geneticist gave the information and in any case it was given by nurses. The limitation of therapies in NICU was mentioned as followed: do not resuscitate (withholding) in 37 (69.8%); suspension of therapies (withdrawal) in 18 (34%) and in 16/53 (30.2%) suspension of therapies and do not resuscitate When decision is taken in 26 (49.1%) cases they start palliative care. In 40/52 (76.9%) cases the decision is written in the patient chart. Resuscitation in the delivery room In the delivery room, in cases of limit of viability, who decides about resuscitation of the newborn? In 51/55 (92.7%) it is the neonatologist and in 8 (14.5%) it is both, the obstetrician and the neonatologist. Parents participate in 17 (30.9%) NICUs; no decision was taken in the delivery room in 6 (10.9%). Three did not answer. In Table I A and B we can observe the aspects that are considered for the clinical investment in relation to a birth in the limit of viability. Comparing north and south we observed that in northern countries the religion is more influent on clinical decisions (Q4; p = 0.032) and more north countries have an ethical committee (Q6; p = 0.012). In those which have an ethical committee, the presence of paediatricians is higher in south countries. Gestational age was considered not significant difference for clinical investment (Q14) in north and south countries. Nevertheless, northern countries consider single gestation (p = 0.033) or multiple gestation (p = 0.009) important, while southern countries consider

birth weight (p = 0.011) and birth weight plus gestational age (p = 0.024) important for clinical investment. Twenty nine (52.7%) NICUs answered to the question about the need to transport the preterm newborn to another hospital after a successful resuscitation. The criteria used are: gestational age in 15/29 (51.7%), being 22 weeks in 2 NICUs and 23 weeks in another 2; 24 weeks in 8/15 (66.7%) NICUs, and 25 weeks in another one. One NICU transfers all babies less than 34 weeks of GA; the birth weight was used as a criterion in 11/29 (37.9%), being 500g in 6/8 (75%), one used 450 grams and another 600 grams. GA and BW were used in 10/29 (34.5%); 4/29 (13.8%) NICUs transfer all viable NB. Seven (24%) units do not transfer the pathologies incompatible with survival. Table IA. In relation to a birth in the limit of viability, which aspects are considered for the clinical investment? n = 53 Gestational Age (GA) Yes = 52 (98.1%) GA (weeks) 22 23 24 25 No answer n (%) 13 (25) 17 (32.7) 12 (21.9) 4 (7.7) 6 (11.5) n = 53 Birth Weight (BW) Yes = 35 (66%) BW (grams) <300 301 400 401 500 >500 Depends No answer n (%) 5 (14.3) 2 (5.7) 11 (31.4) 10 (28.5) 2 (5.7) 7 (20) Table IB. In relation to a birth in the limit of viability, which aspects are considered for the clinical investment? Gestational Antenatal Single Multiple n = 53 Age + Birth Weight Gender steroids gestational gestational n (%) 37 (72.5) 0 14 (26.4) 4 (7.5) 5 (9.4) 2012 Informa UK, Ltd.

986 H. Guimares et al. Table II. Case reports. If the doctor(s) involved in the birth, believe that there is no chance for survival, is the resuscitation started? n = 49 During birth, when a good outcome is unlikely, are the parents involved in the decision of resuscitation? n = 51 Are the parents usually involved in the decision of resuscitation? n = 51 Yes n (%) 9 (18.4) 18 (35.9) 16 (31.4) No n (%) 25 (51) 23 (45) 22 (43.1) Sometimes (%) 15 (30.6) 10 (19.6) 13 (25.5) Table III. Case reports. Newborn, 24 weeks Ex-preterm of 25 weeks gestation, gestation, not ventilated, severe IUGR, with short bowel (no After a DNR decision intra-ventricular-haembowel) for multiple necrotizing enin the delivery room In the third day of life, a orrhage- IV bilateral. In teroc olitis episodes, self ventilated, of a preterm in the grade IV, bilateral, intra-If the intraday 25 of life during an with BPD and oxygen therapy and limit of viability; if the ventricular haemorrhage ventricular episode of nosoco mial total parenteral nutrition. The baby preterm survives for occurs. The newborn is haemorrhage is sepsis, he (she) init iates needs intubation and ventilation some hours, what do ventilated. What would unilateral, what apnoea episodes. Wha t for an infectious episode. What is n = 55 you do? * you do? would you do? is your opinion? your opinion? ** n (%) n (%) n (%) n (%) n (%) Resuscitate, or 20 (40.8) 26 (47.3) 50 (90.9) 31 (56.4) 28 (52.9) maintain intensive care or ventilate Maintain DNR, or 22 (44.9) 17 (30.9) 1 (1.8) 17 (30.9) 18 (33.9) stop intensive care or not ventilate Talking with 6 (13.2) 12 (21.8) 4 (7.3) 8 (14.5) 6 (11.3) parents*6 do not use DNR (Do Not Resuscitate); **2 did not answer. Table IV. Ethic dilemmas. When the law does not consider any limitation to treatment, should ethical questions be raised? If yes, should ethical questions prevail when the decision is made? In a newborn, all experiences should be done, in order to beneficiate

future patients? From an ethical point of view, is there any difference between withdraw a treatment and do not initiate the treatment? From an ethical point of view, there is no problem on administering a drug to accelerate death? The high care costs should be taken into account on the clinical investment of a newborn with reserved prognosis? n = 54 n = 47 n = 50 n = 54 n = 54 n = 52 Yes, n (%) 49 (90.7) 35 (74.5) 17 (34) 34 (63) 7 (13) 13 (25) No, n (%) It depends 3 (5.6) 2 (3.7) 9 (19.1) 3 (6.4) 26 (52) 7 (14) 20 (37) 0 47 (87) 0 38 (73.1) 1 (1.9) Allow natural death or do dot resuscitate When the resuscitation is not successful 51/53 (96.2%) NICUs provide comfort care. Facing a decision of do not resuscitate (DNR) or allow natural death (AND), palliative care/comfort are offered as followed: room air in 27 (52%); supplemental oxygen in 27 (52%); heat in 46 (88.5%); enteral nutrition in 27 (52%); parenteral nutrition in 14 (26.9%); intravenous dextrose in 28 (53.8%); analgesics in 47 (90.3%); invasive procedures for comfort in 9 (17.3%). In Tables II and III we can see the ethical decisions in some clinical situations. Newborns with trisomy 18, with oesophageal atresia, should perform a palliative surgery, in 33/54 (61.1%) NICUs. We had tried to see whether any statistically significant association was present between the attitudes to withdraw intensive care and to use analgesia, but no significant result appeared. Ethic dilemmas Eleven out of fifty three (20.8%) mention that everything should be

done, always, to keep the life of a newborn, even when the outcome is not favourable, 26 (49%) do not agree and 16 (30.2%) answer that it will depend on the case, being important parent s opinion. In situations of severe physical neurological incapacity or intellectual disability of a newborn, when asked if, to live is always better than not to live, the answers were: Yes, if physical in 10 (18.9%); no, if physical in 10 (19.9%); yes, if intellectual in 6 (11.3%); no, if intellectual in 18 (34%); it depends 22 (41.5%) according to parent s opinion. Some usual ethical dilemmas are mentioned in Table IV. In north countries more than in south countries, ethical questions should not prevail when the decision is made (Q 30; p = 0.049); and in north countries more than in south countries, from an ethical point of view, there is no difference between withdraw a treatment and do not initiate the treatment (Q 32; p = 0.029). Parent s information and participation of parents in ethical decision-making In the daily work the informations concerning patients are given to parents: near the patient in 45/55 (81.8%); in a room with privacy 31 (58.5%); always the same doctor in 13 (23.6%); an assistant is allowed to give the informations 13 (23.6%). In 53 (96.4%) NICUs, doctors take the initiative of giving the parents the informations concerning the changes on patient clinical condition and the results of exams. The Journal of Maternal-Fetal and Neonatal Medicine

Neonatal ethics 987 Table V. Some analgesia and research procedures. Is any analgesia performed Is any analgesia performed Is any analgesia performed During a research trial to test a during a heel prick proceduring chest air leak drainage in during intubation in your new drug, do you use a plac ebo for dure in your department? your department? department? control groups? n= 54 n = 51 n = 51 n = 38 Always, n (%) 19 (35.2) 47 (92.2) 22 (43.1) 2 (5.3) Never, n (%) 6 (11.1) 0 3 (6) 13 (34.2) Seldom /rarely, n (%) 29 (53.7) 4 (7.8) 26 (50.9) 23 (60.5) In 31/54 (57.4%) NICUs it is not considered a period of time to talk with parents; only in 23 (42.6%) this organization exists. In case of error, fail or non-conformity, these informations are given to the parents in 42/52 (80.8%) NICUs. These informations are given by the doctor responsible for the patient in 44/54 (81.5%); any doctor from the NICU 14 (25.9%); nurse in charge of patient 2 (3.7%); head of department or senior in 10 (18.5%). In 48/51 (94.1%) NICUs the information is given orally and it is written in 3 (5.9%). The informations are given in the moment of the error in 41/51 (80.4%) and as soon as possible in 10 (19.6%). In the case of a death/unavoidable death, the informations are given to parents by the doctor responsible for the patients in 46/54 (85.2%); any NICU doctor in 16 (29.6%); chief of department or senior in 3. How is it given? To both mother and father at the same time in 51/54 (94.4%); always by two doctors in 8 (14.8%); nurse present in 22 (40.7%). When is it given? Before death in 41/54 (75.9%); at the moment of death or after death in 27 (50%); during hospitalization in 14 (25.9%); it depends or when obvious in 2. Miscellaneous During hospitalization the help is giving according to parental religious necessity in 34/44 (77.2%); during the lute in 12/34 (35.3%). All truth is always given to the parents about a bad outcome in 50/53 (94.3%). The communication of truth about a bad outcome is given in steps 46/54 (85.2%). The degree of education, religion and socio economical status is taken into consideration when giving information to the parents in 48/54 (88.9%). In 52/54 (96.3%) there is psychological help, which is a psychologist in 44/52(84.6%); psychiatrist in 23 (44.2%); doctors

from the NICU in 27 (51.9%); nurse in 15 (28.8%). If parents need, there is religious help in 42/53 (79.2%). Parents participate in their babies care in 51/55 (92.7%); bath and nursing if clinically stable in 45/51 (88.2%). Attitudes about analgesia and research procures are seen in Table V. More hospitals in south countries affirm to administer any analgesia during a heel prick (Q56), than in north countries (p = 0.007). The limits in blood volume samples for research in a newborn were 1 ml/kg in 23/37 (63.9%); 1 ml in 11 (30.5%); one NICU, 2 ml, two, 3 ml and one NICU less than 5% of PT blood. Discussion This study gives wide information about daily attitudes and practices in perinatal care in Europe and allows professionals a reflection when faced with similar situations. We collected 55 questionnaires from 55 NICUs, only one by NICU, dedducing from each questionnaire, the global attitude of each NICU.This is the first study that analyzes the behaviour of the entire NICU, giving us more accurate information that allows us to compare units and hospitals. In the few cases we received some divergent information from one NICU, and to obtain the correct information, a personnel dialogue was done and the information was taken by the Chief of NICU. General ethical attitudes Most of the participants NICUs (81.8%) were Level III, fact that allows us to obtain the answers and opinions of NICUs that daily face these problems. The religion was Christian in 90.7% and comparing north and south countries we observed that in north countries the religion is more influent on clinical decisions (p = 0.032) and more north countries have an ethical committee p = 0.012). This result is according to other studies that show significant differences in physicians attitudes and practices between countries [8,9]. Ethical decisions occurring in professional practice are related in more than 80% to congenital anomalies, severe neurological deficits, treatment and extreme prematurity, and in about 50% are related to research. These aspects are also mentioned by others [10,11]. The decisions were assumed by the service in 63% of cases and individually in 31.5%, being the case present to the ethics committee on health in 26%. It would be desirable that the decision was accepted by all the staff, but these important decisions have to be made on the basis of physicians assessments of the long-term consequences of various possible choices. In many cases such assessments cannot be derived from a consensual professional opinion because the high level of uncertainty of each situation [12,13].

We found a wide variation among the hospitals, in the participants in ethical decisions: only professionals of the NICU in 22 units (40.7%), being doctors in 98.1% and nurses in 50%.The regular staff meetings will be useful to obtain consensus among professionals, knowing that the attitudes can be quite different between doctors and nurses [14]. These meetings must involve more and more the parents. In this survey parents participated in 35 NICUs. This participation and involvement of parents varies among European countries [15]. The information about a bad prognosis, before the birth of a risk neonate, was foreseen in all NICUs, being present the Obstetrician in 48 NICUs, and by the Neonatologist in 32. The act of informing is a legal and moral obligation and to be informed is a basic right [16,17]. The anticipated delivery of an extremely low gestational age infant raises difficult questions and each institution should provide consistent guidelines for antenatal counselling. Parents should be provided the most accurate prognosis possible on the basis of all the factors known to affect outcome for each particular case. The limitations of therapies mentioned in NICUs were: withholding in 37 (69.8%) and withdrawal (suspension of therapies) 2012 Informa UK, Ltd.

988 H. Guimares et al. in 18 (34%), meaning that it was more difficult to decide about suspension of therapies. These data showed that the ethical differences between withholding and withdrawal of life support can be related to staff culture and religion [18]. However, in other study it was observed that for the majority of the neonatologists, the differences in critical care practices were not attributed to personal religious or spiritual views [19]. Recently the following general guidelines were suggested by the Committee on Fetus and Newborn. If the physicians involved believe there is no chance for survival, resuscitation is not indicated and should not be initiated. When a good outcome is considered very unlikely, the parents should be given the choice of whether resuscitation should be initiated, and clinicians should respect their preference. Finally, if a good outcome is considered reasonably likely, clinicians should initiate resuscitation and, together with the parents, continually revaluate whether intensive care should be continued. Whenever resuscitation is considered an option, a qualified individual, preferably a neonatologist should be involved and should be present in the delivery room to manage this complex situation. Comfort care should be provided for all infants for whom resuscitation is not initiated or is not successful [20]. The caregivers pay greater attention to the views of parents and provided respectful support to the neonates when lifesustaining treatment is withdrawn. When decision was taken, in 40/52 (76.9%) cases it was written in the patient chart. This written information is the better way to guarantee coherence [16]. Twenty-six (49.1%) NICUs started palliative care, when decided to stop intensive therapy. This attitude has been increasing worldwide in last decades in neonatology. The practical development of palliative care during the neonatal period is not easy, even though obstetricians and neonatologists have always been aware of the ethical necessity of comfort in the dying newborn. This decision begins with the recognition of the clinical situation, followed by withdrawing treatments, and finally an institution of a palliative care plan with the medical team and the parents [21 23]. Resuscitation in the delivery room There is great debate regarding the extent of intensive care for extremely premature newborns and differences in attitudes vary worldwide [24 33]. In the delivery room, in cases of limit of decided about resuscitation of the newborn and in 14.5% it was both, the obstetrician Parents participated in 30.9% of NICUs. No delivery room in 10.9%. viability, the neonatologist in 92.7% and the neonatologist. decision was taken in

Gestational age was considered of no significance for clinical investment in north and south countries. Nevertheless, north countries considered important for clinical investment the birth weight (p = 0.011) and the birth weight plus gestational age (p = 0.024).

Although GA is often used as the primary basis for counselling and decision-making for extremely premature infants, additional factors could improve prediction of outcomes. In a populationbased cohort, the addition of prenatal steroid exposure, sex, singleton or multiple birth, and BW to GA allowed for improved prediction of rates of survival to discharge for extremely premature infants [34 36]. Mortality rates for infants born at 23 to 26 weeks of gestation could be estimated simply on the basis of GA, gender-specific BW quartiles, prenatal corticosteroids, and multiple births [37]. Twenty nine (52.7%) NICUs answered to the question about the need to transport the preterm newborn to another hospital after a successful resuscitation, and we observed a very wide variation on attitudes. The criteria used were GA in 15/29 (51.7%), being 22 weeks in two NICUs and 23 weeks in other two, 24 weeks in 8/15 (66.7%) NICUs and was 25 weeks in one. BW was used as criteria, in 11/29 (37.9%), being 500g in 6/8 (75%), one used 450 grams and another 600 grams. GA and BW were the criteria in 10/29 (34.5%). Only 4/29 (13.8%) NICUs transfer all viable NB and 7 (24%) do not transfer the pathology incompatible with survival, providing comfort care. Palliative care in newborns may take place in the delivery room and then continued either in maternity wards or in the neonatal unit. These are babies born with a severe intractable congenital malformation and extremely preterm newborn babies at the limits of viability [21 23]. Allow natural death or do dot resuscitate When the resuscitation was not successful 51/53 (96.2%) provided comfort care. Facing a decision of do not resuscitate (DNR) or allow natural death (AND), palliative care/comfort were offered as follows: room air in 27 (52%); supplemental oxygen in 27 (52%); heat in 46 (88.5%); enteral nutrition in 27 (52%); parenteral nutrition in 14 (26.9%); intravenous dextrose in 28 (53.8%); analgesics in 47 (90.3%); invasive procedures for comfort in 9 (17.3%). Constant advances in perinatal medicine in industrialized countries have given rise to challenging ethical dilemmas. However, there remain many newborns whose medical conditions are incompatible with sustained life. At times, healthcare providers and parents may agree that prolonging life is not an appropriate goal of care, and they choose to alleviate suffering. Recently, paediatric palliative treatment protocols are gaining greater acceptance, but there remain some children who suffer despite all maximal efforts. For these children, some countries developed ethical arguments in support of euthanasia [38,39]. Active euthanasia appeared to be acceptable and is practiced in the Netherlands, France, and to a lesser extent Lithuania and less acceptable in Sweden, Hungary, Italy, and Spain [39]. Opinions of health professionals vary widely between countries, and, even where neonatal euthanasia is already practiced, do not uniformly support its legalisation. 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 [39]. The Committee on Ethics of the French National Federation

of Neonatologists in new guidelines concerning the end of life in the neonatal period favours palliative care and discouraging active ending of life on neonates in situations with extremely poor neuro-cognitive prognosis [40]. As we can observe in tables II andIII, the ethical decisions in different clinical situations determined different NICUs attitudes. In this survey, in any case, NICUs reported cases of active euthanasia. Ethic dilemmas Eleven out of fifty three (20.8%) mention that everything should be done, always, to keep the life of a newborn, even when the outcome is not favourable but 26 (49%) do not agree and 16 (30.2%) answer that it will depend on the case, being important parents opinion. Other studies showed a general agreement across the countries, in cases of bad outcome that is to discourage the aggressive treatment and to alleviate suffering [41]. However, recently, in EURONIC (European Union Collaborative Project on Ethical Decision Making in Neonatal Intensive Care) project within Europe, large differences persist among neonatologists [42]. In the situations of severe physical neurological incapacity or intellectual disability of a newborn, when asked, if to live is always The Journal of Maternal-Fetal and Neonatal Medicine

Neonatal ethics 989 better than not to live, the answers were very similar, which means that many factors are involved in ethical decisions, such as parent s opinions [43,44]. In north countries more than in south countries, ethical questions should not prevail when the decision is made (p = 0.049); and in north countries more than in south countries, from an ethical point of view, there is no difference between withdraw a treatment and do not initiate the treatment (p = 0.029). In the case report s questions, the answers were quite different among NICUs. Babies and parents suffer and in the situations of withholding or withdrawing, NICUs must provide palliative care to treat newborns and families with dignity [45]. However it is not easy to identify the exact moment of this decision. In some situations there is an early phase when prognosis is uncertain and doubts exist on decisions to continue or to withdraw life-sustaining treatment. A window of opportunity for withdrawal of life support early probably exists and if decisions are delayed there is the risk that the patient will survive with severe impairment. This means that we need prognostic tests to a better evaluation of each case and to reconsider our current attitudes toward the comfort or palliative care of newborns predicted to be severely impaired [46,47]. The concept of poor quality of life is widely used as a reference in end-of-life decisions. But poor quality of life has a wide range of personal viewpoints. In each situation the decision must be taken according the best interests of the newborn. The opinion of parents is considered important and is sometimes the main determinant in decision-making process. However we know that sometimes parents' decisions are based on their own wishes and it is important that neonatologists could guide parents in this difficult process [48,49]. The Committee on Foetus and Newborn and the Committee of Bioethics, both from American Academy of Paediatrics published two different statements, respectively the Expertise model (objective and scientific) and the Negotiated model (decision with parents). Both agree that a goal of neonatal medicine is to minimize both under- and over treatment of the extremely premature infant and advocate that the decision-making process ought to be based on the concept of the The best interest of the baby . The Expertise model is based on the knowledge of the outcome, there is no emotional involvement, there is a rational evaluation of the decisions and doctors are in better situations to decide. The best interest of the baby is based on the individualized prognostics. The Negotiated model includes doctors and parents values, doctors guide the parents to decide and parents give the moral knowledge [50]. The Committee of Bioethics agrees that the best interest of the baby is individualized care, but knowing the existence of incertitudes

in medicine consider both components to decide. This is probably the more ethically appropriate model to approach decision making [50]. Parent s information and participation of parents in ethical decision-making Parents' information and their participation in care and ethical decisions concerning their newborn infants are an increasing reality [43,48,50]. In this survey, the daily informations concerning patients are given near the patient in 45 81.8% NICUs. They are given in a room with privacy only in 58.5% and by the same doctor in 23.6%. An assistant is allowed to give the informations 23.6% NICUs. In almost all NICUS (96.4%), doctors take the initiative of giving the parents, the informations concerning the changes on patient clinical condition and the results of exams. Only in 42.6% is considered a period of time to talk with parents. These data show that most of NICUS have an accurate approach, but it is necessary to improve practices in some of them. It will be necessary and very useful to include ethics education in the curriculum of paediatrics and in neonatal-perinatal medicine, as well to teach medical ethics to the staff in NICUS [51,52]. In case of error, fail or non-conformity these informations were given to the parents in 80.8% NICUs and by the responsible doctor for the patient in 81.5% NICUS. Any doctor from the NICU gave the information in 25.9% and in two it was the nurse in charge of the patient who spoke with parents. In most of NICUs (94.1%) the information was given orally and it was written only in 3 NICUs. In all NICUs the informations are given in the moment of the error or as soon as possible. We observed that the majority of NICUs, in cases of error, had a good approach talking with parents, but also in these particular cases, improvements are necessary, namely the knowledge of the NICU behaviour in this field, involving and developing a nonpunitive approach to the error [53]. In the case of a death or unavoidable death, the informations are given to parents by the doctor responsible for the patients in the majority of NICUs (85.2%). However in 16, any NICU doctor can give this information. Three NICUs considered these informations must be given by the chief of department or a senior. In most of NICUS (94.4%) the information is given to both mother and father at the same time, but only by two doctors in 8 NICUs. The nurses participated in 40.7% of NICUs. This information is given before death in 75.9% in NICUs. We supported that in the case of a death or unavoidable death the information must be given to both father and mother, in a room with privacy, by at least two members of the staff and at

least one nurse. Understanding parents feelings in case of neonatal death, caregivers can better assist with the grieving process and respect parents autonomy [44,45,49,54]. Miscellaneous During hospitalization the help was giving according to parental religious necessity in 77.2% and during the lute in 35.3%, showing that this last aspect is necessary to be improved. All truth was always given to the parents about a bad outcome in almost all NICUs (94.3%) and also in almost all NICUs (85.2%) this communication was given in steps, taken into consideration the education, religion and socio economical status. These results show that most of NICUs are able to communicate with families even in bad prognostic situations, aspect very grateful, knowing that is was shown that neonatologists are highly trained in the technical skills to care high risk newborns, but less trained in the communication skills, namely when facing end-of-life decisions [40]. Another grateful aspect to be considered was that in the majority of NICUs (96.3%) there was a psychological help, which was given by a psychologist in 84.6%, a psychiatrist in 44.2%, staff doctors in 51.9% and nurses in 28.8%. In cases of parents need there was a religious help in 79.2%. Parents participate in their babies care in 92.7% of NICUs, what is an excellent practice in European Countries and favours the newborn parents bonding. Every newborn has the right to be preserved from pain [5,7]. However, more hospitals in south countries affirm to administer any analgesia during a heel prick (Q56), than in north countries (p = 0.007). This aspect shows that in spite of all documents 2012 Informa UK, Ltd.

990 H. Guimares et al. published on newborn rights, neonatologists and ethicists have much work to do in this particular aspect of pain not forgetting all other aspects of ethics in neonatal medicine [5,7]. When the resuscitation is not successful 96.2% provide comfort care. This practice is very important for newborns and families and we hope that in a near future European NICUs can develop the palliative care, a more structured approach to these patients and families. Ethics is an essential component of neonatal and perinatal research and the ethical principles, namely beneficence, nonmaleficence, autonomy, and justice, must be followed in Perinatology [55 57]. In this survey many NICUS did not have research, fact that justified the wide range of answers in this filed, for example when the question was the blood volume samples for research in a newborn. Conclusion This international multicenter study reveals that cultural and religious differences influenced ethical attitudes in NICUs of the European countries. It is crucial to facilitate studies in Bioethics and improve the ethical education of professionals, parents and families. The establishment and publication of ethical guidelines or recommendations in Perinatology are necessary to uniform practices and decrease the wide variation in attitudes in perinatal care observed in this survey. Similar studies on Ethics in Perinatology and Neonatology are necessary to improve NICUs practices. Collaborative study group Belgium: Erasmus hospital Brussels (Bart Overmeire); Croatia: Clinical Hospital Centre Zagreb, Department of Obstetrics and Gynecology (Emilja Juretic); Czech Republic: Institute for the Care of Mother and Child, Prague (Zbynek Stranak); Department of Neonatology, Faculty Hospital (Lumir Kantor); University Hospital Brno, Departement on Neonatalogy (Ivo Borek); Perinatal Center Krajska nemocnice T.Bati a.s. Zln (Jozef Macko); Paediatrics & Neonatology Department Hospital Most, (MUDr. Jir Biolek); Dept. of Neonatology, Charles University Hospital in Pilsen (Jiri Dort); University Hospital Ostrava Department of Neonatology (Renata Kolarova, Hana Wiedermannova); Denmark: Rigshospitalet Copenhagen (Gorm Greisen); Estnia: West-Tallinn Central Hospital, Women s Clinic (Pille Saik); Tallinn Children's hospital (Mari-Liis Ilmoja); France: Hpital Antoine Bclre (Vronique Zupan Simunek); Germany: University Lubeck, Department of Pediatrics (Christoph Hartez); Greece: 1st Dept of Neonatology and Neonatal Intensive Care Aristotle University of Thessaloniki, Ippokration Hospital, Thessaloniki (Vasiliki Drossou-Agagidou); B' NICU Aristotle University

Thessaloniki (George Mitsiakos); B MEN Agia Sophia children's hospital (Anatolitou Fani, Anastasios Korkas); Neonatal Dept & NICU University General Hospital of Alexandroupolis (Ioannis Sigalas); Italy: University of Siena (Giuseppe Buonocore, Carlo Bellieni); Latvia: Riga Maternity Hospital (Inese Blodniece); Regional Hospital of Vidzeme, City Valmiera (Inga Ozolina); Liepaja Regional Hospital (Inese Medvecka); University Children s Hospital in Riga (Daiga Kviluna); P.Stradin s University Hospital in Riga (Valdis Urtans); Center of Perinalal Care, Jekabpils (Inguna Kaleja); Lithuania: Kaunas Medical University Clinic (Zita Petruskeviciene); Netherlands: Sophia Children s Hospital, Erasmus Medical Center, Rotterdam (Johannes (Hans) B. van Goudoever); Emma Children's Hospital AMC, Amsterdam (Anton H. Van Kaam); Poland: Neonatal Department Warsaw Medical University (Maria Katarzyna Borszewska-Kornacka); Department of Neonatology Jagiellonian University Cracow (Ryszard Lauterbach); Ginekologiczno-Potozniczy Szpital Kliniczny, Pozan (Jerzy Szczapa); Portugal: Hospital So Sebastio, Santa Maria da Feira (Rui Carrapato); Hospital de Gaia, Vila Nova de Gaia (Rui Pinto, Nise Miranda); Hospital da Luz, Lisboa (M Graa Henriques); Maternidade Bissaya Barreto, Coimbra (Conceio Ramos); Maternidade Alfredo da Costa, Lisboa (Clia Iglsias Neves, Joo Castela, Teresa Tom); Centro Hospitalar Trs-os-Montes e Alto Douro, Vila Real (Juan Calvio Cabezas; Centro Hospitalar Pvoa de Varzim, Pvoa de Varzim (Conceio Casanova e Margarida Pontes); Hospital do Esprito Santo, vora (Ana Serrano, Maria Jos Guerreiro Mendes); Hospital Prof. Doutor Fernando Fonseca, Amadora (Rosalina Barroso); Centro Hospitalar do Alto Ave, Guimares (M Jos Costeira); Hospital de Dona Estefnia, Lisboa (NICU); Hospital de So Joo, Faculdade de Medicina, Universidade do Porto, Porto (Herclia Guimares, Gustavo Rocha); Hospital Santa Maria, Lisboa (Joana Saldanha, Carlos Moniz, Margarida Albuquerque); Centro Hospitalar do Tmega e Sousa, Valongo (Ildio Silva Quelhas); Centro Hospitalar Mdio Ave, Famalico (JM Gonalves Oliveira); Hospitais da Universidade de Coimbra (Mrio Branco); Serbia: Institute for children and youth health care of Vojovodina (Aleksandra Doronjski); Slovakia: University Hospital, Nove Zamky (Gabriela Magyarova, Eva Radvanska); Clinic of Neonatology, University Hospital Martin (Katarina Matasova MD, PhD); FnsP - ilina (Michal Jno ); Slovenia: Division of Perinatology, Dept of Gynecol & Obstetrics, University Medical Center, Zaloska (Janez Babnik); University Clinical Center Maribor (Zdravko Roskar); Spain: Hospital General Universitario Gregorio Maran, Madrid (Manuel Sanchez-Luna); Turkey: Hacettepe University Childrens Hospital, Ankara (Murat Yurdakok). Declaration of Interest: The authors report no conflict of interest. References 1. Keller M, Felderhoff-Mueser U, Lagercrantz H, Dammann O, Marlow N, Hppi P, Buonocore G, et al. Policy benchmarking report on neonatal health and social policies in 13 European countries. Acta Paediatr 2010;99:1624 1629. 2. Parappil H, Rahman S, Salama H, Al Rifai H, Parambil NK, El Ansari W. Outcomes of 28 + 1 to 32 + 0 weeks gestation babies in the state of Qatar: finding facility-based cost effective options for improving the

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