- Email: [email protected]
Ethical aspects of cardiopulmonary resuscitation in premature neonates: where do we stand?
Resuscitation 51 (2001) 225– 232 www.elsevier.com/locate/resuscitation
Review article
Ethical aspects of cardiopulmonary resuscitation in premature neonates: where do we stand? Patrick J. Van Reempts *, Karel J. Van Acker Department of Pediatrics, Di6ision of Neonatology, Uni6ersity Hospital Antwerp, Wilrijkstraat 10, B-2650 Antwerp (Edegem), Belgium Received 12 February 2001; received in revised form 10 April 2001; accepted 12 June 2001
Abstract Advances in diagnosis, techniques, therapeutic interventions, organisation of perinatal care, and socio-economic factors have all contributed to the survival after resuscitation and intensive care of neonates with extremely low birth weight and gestational age. While morbidity during the first years of life in those infants does not increase, at school age multiple dysfunctions may become apparent. What are the limits of intensive care for the newborn? Is it right to use extreme technical and economic measures for neonates with a borderline chance of survival? What is justifiable for the neonate, the family, the society and how does legislation interfere in a decision process which involves starting, stopping or continuing intensive care? A short historical overview for the care of the newborn is given, followed by the outcome after resuscitation and treatment of the very low birth weight infant. Published management strategies and recommendations are discussed. © 2001 Elsevier Science Ireland Ltd. All rights reserved. Keywords: Ethics; Neonatal resuscitation; CPR; Informed consent; Intensive care; Outcome
1. Introduction Five to ten percent of babies are born prematurely or have a birth weight (BW) below 2500 g, while 1–2% have a gestational age (GA) below 28 weeks or a BW below 1000 g (extremely low BW infants). One percent of all newly born babies suffer from perinatal asphyxia and in 0.1% of them ischaemic encephalopathy develops. One in 1000 of these infants will die or develop a permanent severe mental disability. One to four percent of neonates present with minor or major congenital anomalies and 0.3 –0.5% arrive in a Neonatal Intensive Care Unit (NICU) with a severe, treatable or untreatable, congenital anomaly. Simple interventions at birth are capable of reducing mortality and morbidity to some extent: The International Committee on Resuscitation (ILCOR) has calculated that, world-wide, about 100 000 babies can be saved yearly from death or morbidity due to asphyxia if * Corresponding author. Tel.: +32-3-821-5802; fax: + 32-3-8214802.
simple appropriate measures are taken [1]. In other instances sophisticated resuscitation and intensive neonatal care is needed. The latter has developed tremendously over the last 20 years, but at the same time it has appeared that such treatment has its limits. The decision to resuscitate and treat the newborn may therefore pose heavy moral and ethical problems to the parents, the medical world and the society. In this paper an attempt is made to review these problems and to propose a number of strategies and recommendations based on the data in the literature.
2. Historical notes The attitude towards care of the neonate has changed regularly over time, influenced by cultural and religious factors, economic needs or the occurrence of epidemics, famine or wars. Infanticide and abstention from lifesustaining measures in very small or dysmorphic infants were, at certain periods, accepted procedures in these societies [2]. More recently the attitude towards the care
0300-9572/01/$ - see front matter © 2001 Elsevier Science Ireland Ltd. All rights reserved. PII: S 0 3 0 0 - 9 5 7 2 ( 0 1 ) 0 0 4 2 7 - 0
226
P.J. Van Reempts, K.J. Van Acker / Resuscitation 51 (2001) 225–232
Table 1 Percentage of survival according to GA
Lorenz, 2000 [73] Hack, 1991 [74] (world literature) EPICure, 2000 [21]
23 weeks
24 weeks
25 weeks
26 weeks
27 weeks
5–41 2–35 11 (CI: 7–15)
33–57 17–58 26 (CI: 22–31)
60–74 35–85 44 (CI: 39–49)
76–83
71–87
Refs. [21,73,74].
of the newborn also evolved. Between 1850 and 1950 it changed from the creation of an environment based on warmth, feeding, hygiene and attention to neutral care without any further measures (‘‘hands-off policy’’; ‘‘natural limit of viability policy’’) [3] and later, when the medical world had been alerted by accidents such as retinopathy of prematurity [3] and an increased mortality rate, towards an active and frankly aggressive therapeutic approach (‘‘hands-on policy’’; ‘‘all-out-rescue policy’’). Concurrently the parent’s fear of disability in their child replaced the fear of death [3]. Finally, from the 1950s on, remarkable progress was made in the field of organisation and technology for neonatal care leading to the creation of centres for prenatal and perinatal care [4], the adaptation of instruments to the neonate and the improvement of diagnostic, therapeutic armamentarium and surgical procedures [5– 7].
3. Mortality and morbidity in the newborn The improved organisation and technology for neonatal care has undoubtedly increased the survival rate in premature neonates as it has in full term neonates and infants with congenital anomalies. Compared to the 1960s, the use of neonatal intensive care has increased the survival rate from 7% to more than 60% in infants with a BW of 500 g and from 78 to 95% in those with a BW of 1500 g. Present survival rates based on the duration of pregnancy are well established but show a wide variation, especially for the extreme premature GA group (Table 1). Furthermore there is a broad variation in survival rate in newborns with identical GA when BW is considered. Therefore, because obstetricians may underestimate the chances of stillbirth, survival or disability in the newborn and thereby provide false information to the parents when using only GA as a prognostic criterion, it may be preferable to use BW as a more accurate indicator for immediate prognosis, especially in the delivery room. A practical guideline, taken from Boyle and Kattwinkel, is given in Table 2. These figures are influenced however by treatment. It is well established that resuscitation increases survival rate, especially in the higher BW group [8]. In Sauve´ ’s geographically based outcome study, the majority of neonates were stillborn when GA was 20
weeks and BW less than 500 g. From the 30% born alive in whom neonatal intensive care was initiated, 11% survived to 36 months and 69% had one or more major disabilities [9]. Tyson has shown that aggressive respiratory and cardiovascular treatment in infants with BW 500–800 g results only in an improvement in survival rate from 65 to 75% [10]. Regionalisation in Canada and the USA in the 1970s has led to an increase in perinatal survival rate from 48 to 85% in infants weighing less than 1500 g. It also became apparent that surfactant, especially when combined with prenatally administered corticosteroids to the mother, further decreased neonatal mortality [11– 13]. Although a lower mortality is still reported in level III perinatal centres as compared to level I or II, no difference in survival or disability rate between infants in utero and infants transported after birth has been observed by others [14]. As survival rate figures are influenced by such factors as prenatal use of steroids, presence of fatal compromise, accuracy of GA, willingness to perform caesarean section and even gender or race, statistics on, and prediction, of survival rates in newborns should be viewed with caution. Each region or tertiary unit must review its own mortality and survival data to be able to counsel parents properly [15,16]. Some argue that predictions on survival are far less accurate when based on single, i.e. small, unit performance [17,18]. Morbidity in the surviving neonate may be confined to the neonatal period or may be a long-term event. It may be related to the gestation or birth or/and may be due to the therapeutic measures that have been taken. The Vermont Oxford Network Experience reports severe (grade III or IV) intraventricular haemorrhage (IVH) in 15.4% of infants weighing 400–1500 g who Table 2 Survival according to birth weight Birth weight (g)
Survival rate (%)
400–499 500–599 600–699 700–799 800–999
10–20 20–55 50–62 60–75 80–90
Adapted from Boyle and Kattwinkel [38].
P.J. Van Reempts, K.J. Van Acker / Resuscitation 51 (2001) 225–232
227
survived CPR and in 4.9% of those who did not undergo CPR in the delivery room. Survival without IVH occurred in 52.2 and 81.2%, respectively [19]. Thirty percent of the infants between 500 and 750 g and 10% of those weighing 750– 1000 g developed severe uni- or bilateral blindness. Grade III or greater IVH was found by Hack in 10– 83% of newborns with GA of 23 weeks, in 17– 45% with GA of 25 weeks and in 10–22% with GA exceeding 25 weeks. Severe clinical symptoms were present in 30, 17– 45 and 16–71%, respectively. Chronic lung disease occurs in 50– 70% of survivors with GA of 23 weeks, 33– 89% with GA of 24 weeks and 16–71% with GA of 25 weeks [20]. It has recently been reported that the need for oxygen domiciliary therapy at 1 year of age is 24% when GA is 23 weeks, 13% at 24 weeks and 7% at 25 weeks [21]. Long-term problems, medical as well as social, have emerged as a consequence of CPR at birth and NIC. We are confronted now with developmental problems, growth disturbance and the need for repeated surgical interventions for complex congenital anomalies. Some children need to be admitted to rehabilitation centres. There are indications for an increased risk for child neglect or abuse [22,23].
the health care costs in children (10% of those for children up to 15 years in the USA) and of the whole population [16]. Third, the costs may be reduced by certain therapeutic measures, such as prenatal corticoids and postnatal surfactant administration [12], [25– 29]. Fourth, the right of society to allocate costly resources to the old rather than to the very young, can be debated [30]. Finally, some expensive treatments in the neonate which have been shown to be efficacious, may be more justified than some others in adults whose efficacy remains to be demonstrated [31–34]. As for the long-term costs, an increasing number of surviving low BW infants need continuing care and some must be admitted to rehabilitation centres. These costs can be estimated and should be taken into consideration. However, the relationship between perinatal problems and long-term physical and cognitive development is not well established and persisting adverse environmental factors such as a low socio-economic situation and low quality of follow-up may be more important [35] and should therefore also be addressed [36,37]. The problem for the society is that the organisation of intensive neonatal care and the provision of the right social environment cannot be separated.
4. Implications of neonatal intensive care for the family, the doctor and the society
5. Who should take the decision to start or to stop treatment?
The aim of neonatal resuscitation should be the qualitatively acceptable survival of the child with no or little need for continuous medical support, as little mental and physical suffering as possible, integration in the society with the possibility to interact with his/her environment and a reasonable life expectancy. The costs of the NIC, which follow resuscitation, should not exceed the financial capability of the community in which the child is born. Thus the decision to initiate or withhold NIC and to continue or stop such treatment, should be based on as much knowledge as possible. For the doctor this supposes not only a thorough insight into the relevant literature data, but also knowledge of the centre where the child is born. This will enable the provision of correct information to the parents and family who should also be involved in the decision making. A question that needs to be discussed briefly is that of the costs of NIC for the society. It is a fact that, since NIC was applied in infants below 1500 g, these costs have risen tremendously. However, although it must be accepted that the society has the obligation to set priorities when providing resources, the following arguments in favour of NIC should be considered. First, the costs are relatively small when compared to those of certain treatments in adults [24]. Second, costs of NIC in low BW infants represent only a fraction of
At first sight it appears logical that the parents and the family should make the final decision to initiate treatment or not in their child. This should, however, be put into the right perspective. Indeed, the question can be asked if the parents are capable of taking rational decisions in such emotionally and physically stressful circumstances. Furthermore, their decision may be influenced by religious and cultural considerations. It can therefore be feared that in many instances they may reach decisions that are not in the interest of their child, themselves or society and differ from that of the other parties involved. Other confusing circumstances may be that the baby needs to be transported immediately after birth and that the parents are not available for discussion or that the clinical situation at birth is better than anticipated and that resuscitation and treatment is nevertheless started by the physician [38–40]. Lee, using a questionnaire, was able to show that more than 90% of the parents opted for active treatment of infants with a BW of less than 1500 g, as opposed to 21% of the nurses and 50% of the paediatricians. On the question of who should take the final decision to treat or to withhold treatment in very low BW infants, more than 90% of the parents thought that they were entitled to do so, whereas nurses and paediatricians were convinced that they should be heavily involved [41]. It is apparent that correct information for
228
P.J. Van Reempts, K.J. Van Acker / Resuscitation 51 (2001) 225–232
the parents before the birth of the child is of utmost importance. Adequate information may, however, be impossible to assimilate when the parents are young, inexperienced or poorly educated. Doron found that not initiating treatment at birth was considered by the parents to be an issue only if the physician had suggested it. In this study 69% of the parents had voiced their wishes before delivery and had decided how much treatment their child should receive after delivery. In 59% there was agreement between parents and physician, although the former showed a more aggressive approach towards resuscitation. Mortality was highest when there was disagreement between parents and physicians. When parents had been well informed there was less overtreatment. The time of death was not influenced by the identity of the person who took the responsibility nor by disagreement [42]. As for the decision to end treatment, a European survey showed that in preterm infants with perinatal asphyxia or in whom complications had occurred, the opinion of the parents influenced the paediatrician’s decision only if continuation of treatment was decided: decisions to end life were not taken when the parents did not consent [43]. Parents, according to a Scottish study, want to be active participants in the decision process, but they need complete and honest information, as well as time to understand the full meaning of a bad prognosis [44]. The decision of the health care pro6ider may be the result of a wish to perform a technique, or ambition or fear of legal implications. Therefore, this decision is not always in accordance with the needs of the family or the society. In Lee’s study, 90% of the nurses and 50% of the paediatricians mentioned severe disability as their main ethical ground for not treating a newborn. Both groups also took the socio-economic situation of the family into consideration. The attitude of the parents was considered as very important while the costs of care did not play a major role, especially for nurses [41,45]. A survey of the attitude of Danish physicians revealed that most would treat at birth a newborn of 24 weeks but would withhold more intensive treatment or even withdraw treatment if severe complications did occur. There was general agreement that life-prolonging procedures should be used even in relatively severe cases if this was the parent’s wish, but that life should not be saved at all costs [46]. Few data exist on the physician’s attitude towards resuscitation of the newborn. In Catlin’s study 96% of physicians would resuscitate extremely low BW infants invoking their role as physician, being trained to save lives, the hazard of determining GA accurately or the request of the parents. It appeared that they found themselves unable to predict which neonates had a chance of intact survival, that they had had conflicts with their colleagues about the viability of the infants and some were severely distressed by the suffering of
the babies. Their decisions were not influenced by statistics on survival, legal constraints or costs of care. Common requests were: clear delineation of ethical criteria for resuscitation, guidelines on information to be given to parents before delivery and support by other the physicians [47]. In a Dutch study physicians felt that quality of life should be considered in the decision to end life [15,43]. Recently a Scottish study demonstrated that the medical team’s perception of who took the final decision to end life differed from that of the parents: doctors and nurses believed that they had made this decision in view of the heavy responsibility [48]. The suggestion that neurodevelopmental morbidity may be equally high whether or not resuscitation is performed in extremely premature neonates is an argument in favour of parental involvement [49]. Medical Ethics Committees, by reducing complex ethical dimensions to simple processes and procedures, may have a role to play when conflicts have arisen between parents and doctors. However, as they dilute the global responsibility, and as there is no proof that they influence the parent’s decision, they have a limited function in the final decision. Nurses consider ethics committees as important [41,50]. As for official institutions such as the Department of Justice or the Ministry of Health, parents, nurses and paediatricians felt that they did not need to be involved in the decision making [41,51,52]. Most paediatricians in The Netherlands are of the opinion that end-of-life decisions should be publicly reviewed, preferably by a committee of independent medical, judicial and ethics professionals rather than by a public prosecutor [15].
6. Existing guidelines for the management of neonatal intensive care Guidelines on life or death strategy in pre-term neonates have been formulated in different countries. In Australia, Murton suggested that adequate care should be provided for infants above 800 g or 27 weeks of GA but cannot be justified below 750 g or 25 weeks; in between there is a grey zone [53]. In Canada, Swyer set the limit at 24 weeks of GA or above 500 g BW, a limit ensuring intact survival within present knowledge and technology [40]. Davis, however, stated that treatment was justified only for infants above 750 g (Davis, 1993, c 642). The Canadian Paediatric Society and the Society of Obstetricians and Gynaecologists suggested in 1994 that treatment at 22 completed weeks of gestation should be started only at the request of fully informed parents or when it appears that the GA has been underestimated. At 23–24 weeks resuscitation may be started if the parents have agreed to the reversibility of this decision according to the infant’s condition at birth. At 25 weeks resuscitation should be attempted in
P.J. Van Reempts, K.J. Van Acker / Resuscitation 51 (2001) 225–232
all infants without lethal anomalies [54]. In the USA the attitude in acute situations at birth, depending on the estimated GA, BW and clinical condition was to treat neonates actively if the parents could not be involved in the decision. In chronic situations the decision was left to the parents [55]. In 1995 the American Academy of Paediatrics and the American College of Obstetricians and Gynaecologists provided suggestions for counselling when the infant’s GA was 23 – 25 weeks, but no specific recommendations for resuscitation [56]. In the United Kingdom the British Association of Perinatal Medicine has issued a number of practical suggestions for the care of extremely immature infants of 22–26 weeks of gestation. Emphasis is put on communication before birth, assessment of GA and option for intrauterine transfer. It states that resuscitation of infants with GA less than or equal to 22 weeks should be undertaken only in controlled circumstances in tertiary centres and proposes a detailed management approach for infants between 22 and 27 weeks gestation. Neonates born between 22 and 28 weeks gestation, are within the viability limits and that thorough prenatal and postnatal counselling and involvement of the parents, interaction between senior perinatologists and information on the follow-up, is essential for this group [57]. In 1994 Doyal proposed to stop treatment when death is unavoidable, when brain damage is so severe that selfdeployment is impossible, when cognitive function is extremely limited and future physical fitness is improbable or when, with sufficient cognitive function, extreme physical disability is present [58]. Provisional intensive care until the prognosis can be improved remains, however, a possibility provided that the parents understand the implications of the aggressive approach and that the care givers are willing to withdraw an ineffective treatment or when the outcome becomes very problematic [59,60]. The Royal College of Paediatrics and Child Health advised to withhold treatment in the following three situations: the no-chance-situation, the no-purpose-situation with massive physical or mental impairment, and the unbearable situation with progressive and irreversible illness. Newborns who do not fit into these categories or with uncertain classification, should receive the best care available. It is recognised that medication that may shorten life can be used, but only for the benefit of the patient. If arrest of ventilatory support does not result in death, euthanasia is inappropriate and palliative and comforting care should be provided [61]. A document from The Netherlands insists on the importance of openness, thoughtfulness and contact between parents and health care providers when treatment decisions are discussed in cases without any chance for survival or for a qualitatively unacceptable life [62]. International guidelines on resuscitation with an evidence based approach and expert opinion were pub-
229
lished in 2000. They stated that non-initiation of resuscitation in a newborn could be defended when GA is less than or equal to 23 weeks, in anencephaly and in confirmed trisomy 13 and 18. When the prognosis is uncertain or when GA is inaccurate, a therapeutic trial with the option of subsequent withdrawal can be considered. Discontinuation of resuscitation should be considered when no spontaneous circulation occurs after 15 min of CPR in an infant with cardiorespiratory arrest [52]. Recently, in France, the ‘‘Fe´ de´ ration Nationale des Pe´ diatres Ne´ onatologistes’’ issued general recommendations on end of life decisions. It gives a framework (general considerations, obligations of the medical and caregiving team, special circumstances) through which perinatal caregivers should come to a humane, socially and ethically justifiable decision, based on beneficence, non-maleficence and equality in the utmost interest of the infant, but with less emphasis on the parents’ autonomy than in Anglo-Saxon recommendations. It suggested that in certain situations with irreversible complications, but with further well being of the infant, active termination of life could be debatable [63]. Dutch paediatricians have been involved in active termination of life with the parents’ consent [64].
7. Providing information Involvement of the parents in the decision process implies that they have a correct insight as to care is ethically justified, optional or still the subject of investigation. Few parents, however, wish to be told facts and statistics and then be left by themselves to decide. The ethical arguments that they can be offered, aside from the legal aspects, should aim at preserving life, avoiding suffering and damage, preserving the patient’s autonomy and using the available medical resources. The parents need to understand that an aggressive approach cannot be justified if the chance for survival is limited or the long-term outcome questionable. It must also be realised that decisions taken in the interest of the child will limit the parent’s authority while those taken in the interest of the family will limit the child’s opportunity. Also, most parents will be reluctant to accept morally based decisions from people who will never have to care for the child [61]. What then is the basic care that should be provided in all cases including resuscitation? Some authors have defined this care as the one that is not futile or meaningless, and is based on criteria, as experience has shown, there is a failure rate of 97%. However, as obstetrical and neonatal care are in constant evolution, such criteria do not provide a safe base for the definition of this care [65]. Evidence based medicine, which takes into account the quality of the available data, identifies the advantages, the dangers and the costs of
230
P.J. Van Reempts, K.J. Van Acker / Resuscitation 51 (2001) 225–232
treatment and which recognises the personal value of the patient, appears to be a better base to ensure a reasonable treatment [66]. As it is the only correct and safe way to evaluate treatment modalities, the neonate may be included in a randomised controlled trial (RCT) which, in the case of non-effectiveness, has the ethical advantage of exposing a minimum of patients. Parents need to be aware of this approach and should agree only after they have had the opportunity to reflect and to consult other sources [65,67,68].
8. Neonatal intensive care and the law In some countries a legal basis is available for the solution of ethical problems that arise when resuscitation and neonatal intensive care is considered or applied. In most European countries this legal basis is provided by civil codes, some of which have law enforcement. The UK uses common law and law enacted by the government. Laws which limit treatment differ according to the country, although most agree that aggressive treatment is not to be encouraged and that parents have the right to decide for their infants except when an urgent situation makes this impossible [69]. In the UK, for example, in case of an urgent but treatable condition the physician has the duty, independently from the parent’s viewpoint, to treat before additional harm occurs. This does not apply to futile treatment. In uncertain conditions, treatment should be given until the situation is clarified [61]. In many cases, however, no legal framework is available. Medical ethics codes such as the Hippocratic oath, the Geneva Declaration or the International Code of Medical Ethics, require the doctor to give absolute priority to the patient’s welfare [70]. It has been advocated that, when neonatal care is obviously mandatory e.g. when birth weight exceeds 1500 g or GA is more than 31 weeks, and equally in the unlikely situation of a BW below 300 g or a GA of 20 weeks, parents should not be involved in the decision process. If there is no emergency, the physician has no duty to treat, especially when the treatment is futile (no chance, no purpose, unbearable); in this event he/she, and not the parents, also has the authority to decide [65].
9. Conclusions Modern techniques have made it possible to rescue an increasing number of neonates with extremely low GA. Many of them have to be resuscitated at birth and during initial treatment, with the possibility of immediate or long-term complications. A number of questions have arisen related to the ethics of these treatments.
The most important is who should take the final decision to initiate, continue or stop treatment. But first it should be agreed that the initial step consists of prevention of prematurity and neonatal asphyxia, implying well-equipped perinatal centres and maternity units in terms of personnel and facilities which are able to provide essential perinatal care with 24 h coverage. As to the questions when to initiate, continue or stop resuscitation and treatment in premature neonates, recommendations have been issued in different countries which may provide a basis for our decisions. At present it seems justifiable in terms of survival and long-term morbidity to apply resuscitation and intensive care from 25– 26 weeks on. At 23–24 weeks a flexible approach is recommended. Common sense and intuition remain, however, necessary in deciding what is in the best interest of the particular infant and family and causes the least harm. The question of who should take the final decision on life or death is a difficult one and is frequently perceived differently by the parents and the medical team. We believe that it is essential that the parents and health care providers should reach an agreement and, as has been recently stated, parents and care givers should ‘‘evaluate together what is in the best interest of the infant and react accordingly’’ [71]. From the medical teams’ side this implies good insight into the parents’ situation, which should be gained before the birth, and a structured but flexible approach to the problem involving other care takers and leaving room for other options. Recent national mortality and morbidity statistics related to GA are very helpful in counselling parents. Medical Ethics Committees play only a subsidiary role and official institutions should not be involved. During the birth of the child, local protocols and strategies, approved by the local ethics committee, should be used. Preferably they should be improved regularly by a quality control audit. New therapeutic measures need to be subjected to randomised controlled trials. An Utstein analysis on this subject, with standardised reporting of patient data and based on empirical evidence or, if possible, evidence based medicine, may be helpful to make more uniform recommendations [72]. Finally, resources should be made available not only for better perinatal care but also for the support of these infants after they have left the neonatal unit. Further research in this problem is needed, focusing on the different perception of the parents and the medical team about responsibility and autonomy, the needs and aspirations of parents in the perinatal period, information for the parents and their participation in the decision process and the consequences of the latter [48].
P.J. Van Reempts, K.J. Van Acker / Resuscitation 51 (2001) 225–232
References [1] Kattwinkel J, Niermeyer S, Nadkarni V, et al. Resuscitation of the newly born infant: an advisory statement from the Pediatric Working Group of the International Liaison Committee on Resuscitation. Resuscitation 1999;40(2):71 –88. [2] Bloch H. Abandonment, infanticide, and felicide. An overview of inhumanity to children. Am J Dis Child 1988;142:1058 –60. [3] Baker JP. The incubator controversy: pediatricians and the origins of premature infant technology in the United States, 1890 to 1910. Pediatrics 1991;87(5):654 – 62. [4] Avery GB, Fletcher MA, MacDonald ME. Pathophysiology and management of the newborn. Lippincott Co, 1994. [5] Ment LR, Schneider KC, Ainley MA, Allan WC. Adaptive mechanisms of developing brain. The neuroradiologic assessment of the preterm infant. Clin Perinatol 2000;27(2):303 – 23. [6] Ohlsson A, Lacy J. Perinatal epidemiology. Curr Opin Pediatr 1993;5:142 – 9. [7] Whitelaw A. Functional imaging in neonatal neurology. Acta Paediatr 1994;83:3345 –7. [8] Finer NN, Barrington KJ. Decision-making in delivery room resuscitation: a team sport [comment]. Pediatrics 1998;102(3 Pt 1):644 – 5. [9] Sauve´ RS, Robertson C, Etches P. Before viability: A geographically based outcome study of infants weighing 500 grams or less at birth. Pediatrics 1998;101:438 –45. [10] Tyson JE, Younes N, Verter J, et al. Viability, mortality and resource among newborns of 501 – 800 g birth weight. J Am Med Assoc 1996;276:1645 –51. [11] Mugford M. A review of the economics of care for sick newborn infants. Community Med 1988;10:99 – 111. [12] Mugford M, Howard S. Cost effectiveness of surfactant replacement in preterm babies. Pharmacoeconomics 1993;3:362 – 73. [13] Schwartz RM, Luby AM, Scanlon JW, Kellogg RJ. Effect of surfactant on morbidity, mortality, and resource use in newborn infants weighing 500 to 1500g. N Engl J Med 1994;330:1476 – 80. [14] Field D, Draper ES. Survival and place of delivery following preterm birth: 1994 –96. Arch Dis Child Fetal Neonatal Ed 1999;80(2):F111 – 4. [15] Kollee LA, van der Heide A, de Leeuw R, van der Maas PJ, van der Wal G. End-of-life decisions in neonates. Semin Perinatol 1999;23(3):234 – 41. [16] Lewit EM, Baker LS, Corman H, et al. The direct cost of low birth weight. Future Child 1995;5(35). [17] Draper ES, Manktelow B, Field DJ, James D. Prediction of survival for preterm births by weight and gestational age: retrospective population based study. Br Med J 1999;319(7217):1093 – 7. [18] Draper ES, Manktelow B, Field DJ, James D. Prediction of survival for preterm infants [letter]. Br Med J 2000;321:237. [19] Finer NN, Horbar JD, Carpenter JH. Cardiopulmonary resuscitation in the very low birth weight infant: the Vermont Oxford Network experience. Pediatrics 1999;104(3 Pt 1):428 – 34. [20] Hack M, Fanaroff AA. Outcomes of children of extremely low birthweight and gestational age in the 1990s. Semin Neonatol 2000;5(2):89 – 106. [21] Costeloe K, Hennessy E, Gibson AT, Marlow N, Wilkinson AR. The EPICure study: outcomes to discharge from hospital for infants born at the threshold of viability. Pediatrics 2000;106(4):659 – 71. [22] Silverman WA. Setting a limit in the treatment of neonates: All or none? Persp Biol Med 1989;32:111 –28. [23] Zupancic JA, Richardson DK, Lee K, McCormick MC. Economics of prematurity in the era of managed care. Clin Perinatol 2000;27(2):483 – 97.
231
[24] The Victorian Infant Collaborative Study Group. Changing outcome for infants of birth-weight 500 – 999 g born outside level 3 centres in Victoria. Aust NZ J Obstet Gynaecol 1997;37(3):253 – 7. [25] Boyle MH, Torrance GW, Sinclair JC, Horwood SP. Economic evaluation of neonatal intensive care of very low birth weight infants. N Engl J Med 1993;308:1330 – 7. [26] Drummond MF, Stoddard GL, Torrance GW. Methods for the economic evaluation of health care programmes. Oxford University Press edition. Oxford; 1987. p. 112 – 48. [27] Hernandez JA, Offut TJ, Butterfeld LJ. The Cost of Care of the Less than 1000 g infant. Clin Perinatol 1986;13:461 – 76. [28] Office of Technology Assessment. Neonatal intensive care for low birthweight infants: costs and effectiveness. Washington, DC, 1987; vol Health Technology. [29] The Victorian Infant Collaborative Study Group. Economic outcome for intensive care of infants of birthweight 500 –999 g born in Victoria in the post surfactant era [see comments]. J Paediatr Child Health 1997;33(3):202 – 8. [30] Lantos JD, Mokalla M, Meadow W. Resource allocation in neonatal and medical ICUs. Epidemiology and rationing at the extremes of life. Am J Respir Crit Care Med 1997;156(1):185 –9. [31] Hintz SR, Suttner DM, Sheehan AM, Rhine WD, Van Meurs KP. Decreased use of neonatal extracorporeal membrane oxygenation (ECMO): how new treatment modalities have affected ECMO utilization. Pediatrics 2000;106:6. [32] Roy BJ, Rycus P, Conrad SA, Clark RH. The changing demographics of neonatal extracorporeal membrane oxygenation. Patients reported to the Extracorporeal Life Support Organization (ELSO) registry. Pediatrics 2000;106:6. [33] Weinstein MC. High-priced technology can be good value for money. Ann Intern Med 1999;130(10):857 – 8. [34] Zupancic JA. Invited comment on economic evaluation and randomised controlled trial of extracorporeal membrane oxygenation: UK collaborative trial. Evidence Based Med 1999;4(128). [35] Rutter M, Casaer P, editors. Biological risk factors for psychosocial disorders. Cambridge University Press; 1991. [36] Cohen SE, Parmelee AH, Sigman M, Beckwith L. Antecedents of school problems in children born preterm. J Pediatr Psychol 1988;13(4):493 – 507. [37] Hack M, Breslau N, Weissman B, Aram D, Klein N, Borawski E. Effect of very low birth weight and subnormal head size on cognitive abilities at school age. N Engl J Med 1991;325(4):231 – 7. [38] Boyle RJ, Kattwinkel J. Ethical issues surrounding resuscitation. Clin Perinatol 1999;26(3):779 – 92. [39] Sonnenblick M, Friedlander Y, Steinberg A. Dissociation between the wishes of terminally ill patients and the decisions by their offspring. J Am Geriatr Soc 1993;41:599 – 604. [40] Swyer PR. How small is too small? A personal opinion. Acta Paediatr 1992;81:443 – 5. [41] Lee SK, Penner PL, Cox M. Comparison of the attitudes of health care professionals and parents toward active treatment of very low birth weight infants. Pediatrics 1991;88:110 – 4. [42] Doron MW, Veness-Meehan KA, Margolis LH, Holoman EM, Stiles AD. Delivery room resuscitation decisions for extremely premature infants. Pediatrics 1998;102(3):574 – 82. [43] van der Heide A, van der Maas PJ, van der Wal G, Kollee LAA, de Leeuw R, Holl RA. The role of parents in end-of-life decisions in neonatology: physicians’ views and practices. Pediatrics 1998;101(3 Pt 1):413 – 8. [44] McHaffie HZ, Lyon AJ, Hume R. Deciding on treatment limitation for neonates: the parents’ perspective. Eur J Pediatr 2001;160:339 – 44. [45] Vaux KL. Ethical issues in caring for tiny infants. Clin Perinatol 1986;13:477 – 84.
232
P.J. Van Reempts, K.J. Van Acker / Resuscitation 51 (2001) 225–232
[46] Norup M. Limits of neonatal treatment: a survey of attitudes in the Danish population. J Med Ethics 1998;24(3):200 –6. [47] Catlin AJ, Stevenson DK. Physicians’ neonatal resuscitation of extremely low-birth-weight preterm infants. Image J Nurs Sch 1999;31(3):269 – 75. [48] McHaffie HE, Laing IA, Parker M, McMillan J. Deciding for imperilled newborns: medical authority or parental autonomy? J Med Ethics 2001;27(2):104 –9. [49] Saigal S. The limits of viability. Pediatr Res 2001;49(4):451. [50] Lee SK, Penner PL, Cox M. Impact of very low birth weight infants on the family and its relationship to parental attitudes. Pediatrics 1991;88:110 –4. [51] Clara R. Euthanasie bij pasgeborenen. In: Bioethiek, ethische, medische en wetenschappelijke perspectieven op de morele problemen van de biotechnologie. VUB Press, 1990:75 – 90. [52] Niermeyer S, Kattwinkel J, Van Reempts P, et al. International Guidelines for Neonatal Resuscitation: An excerpt from the Guidelines 2000 for Cardiopulmonary Resuscitation and Emergency Cardiovascular Care: International Consensus on Science. Contributors and Reviewers for the Neonatal Resuscitation Guidelines. Pediatrics 2000;106(3):E29. [53] Murton LJ, Doyle L, Kitchen WH. Care of very low birth weight infants with limited neonatal intensive resources. Med J Austr 1987;146:78 – 81. [54] Fetus and Newborn Committee CPSM-FMCSoOaGoC. Management of the woman with threatened birth of an infant of extremely low gestational age. Fetus and Newborn Committee, Canadian Paediatric Society, Maternal –Fetal Medicine Committee, Society of Obstetricians and Gynaecologists of Canada. Can Med Assoc J 1994;151(5):547 –53. [55] Lantos JD, Tyson JE, Allen A, Frader J, Hack M, et al. Withholding and withdrawing life sustaining treatment in neonatal intensive care: issues for the 1990s. Arch Dis Child 1994;71:F218 – 23. [56] American Academy of Pediatrics Committee on Fetus and Newborn, American College of Obstetricians and Gynecologists Committee on Obstetric Practice. Perinatal care at the threshold of viability [see comments]. Pediatrics 1995;96(5 Pt 1):974 – 6. [57] British Association of Perinatal Medicine (Gee G, Dunn PobotBec. Fetuses and Newborn Infants at the Threshold of Viability: A Framework for Practice. 2000; http://www.bapm-london.org/ publications/threshold.pdf.) [58] Doyal L, Wilsher D. Towards guidelines for withholding and withdrawal of life prolonging treatment in neonatal medicine. Arch Dis Child Fetal Neonatal Ed 1994;70(1):F66 –70. [59] Fischer AF, Stevenson DK. The consequences of uncertainty.
[60] [61]
[62] [63]
[64] [65]
[66]
[67] [68]
[69]
[70] [71]
[72]
[73] [74]
An empirical approach to medical decision making in neonatal intensive care. J Am Med Assoc 1987;258(14):1929 – 31. Kraybill EN. Ethical issues in the care of extremely low birth weight infants. Semin Perinatol 1998;22(3):207 – 15. Stenson B, McIntosh N. Some ethical considerations in the neonatal intensive care area. Eur J Pediatr 1999;158(Suppl 1):S13– 7. Nederlandse Vereniging voor Kindergeneeskunde. Doen of laten. Utrecht, 1992. Fe´ de´ ration Nationale des Pe´ diatres Ne´ onatologistes. Dilemmes Ethiques de la Pe´ riode Pe´ rinatale: Recommendations pour les de´ cisions de fin de vie (abstention, limitations, arreˆ t des traitements et arreˆ t de vie). 2000; http://www.societefrancaisepediatrie. asso.fr/. Versluys Z, de Leeuw R. A Dutch report on the ethics of neonatal care. J Med Ethics 1995;21(1):14 – 6; [discussion] 17 –8. Tyson J. Evidence-based ethics and the care of premature infants. In: Behrman RE, editor. The future of children. Low birth weight edition. Vol. 5. Centre for the future of children. The David and Lucie Packard Foundation, 1995:197 – 213. Evidence-Based Medicine Working Group. Evidence-based medicine. A new approach to teaching the practice of medicine. J Am Med Assoc 1992;268(17):2420 – 5. Silverman WA. Human experimentation in perinatology. Clin Perinatol 1987;14(2):403 – 16. Tyson JE. Use of unproven therapies in clinical practice and research: how can we better serve our patients and their families? Semin Perinatol 1995;19(2):98 – 111. McHaffie HE, Cuttini M, Brolz-Voit G, et al. Withholding/withdrawing treatment from neonates: legislation and official guidelines across Europe. J Med Ethics 1999;25(6):440 – 6. Beauchamp TL, Childress JF. Principles of biomedical ethics, 3rd ed. New York: Oxford University Press, 1989. Sauer PJ, and the members of the Working Group. Ethical dilemmas in neonatology: recommendations of the Ethics Working Group of the CESP (Confederation of European Specialists in Paediatrics). Eur J Pediatr 2001;160:364 – 8. Zaritsky A, Nadkarni V, Hazinski MF, et al. Recommended guidelines for uniform reporting of pediatric advanced life support: the Pediatric Utstein Style. A statement for healthcare professionals from a task force of the American Academy of Pediatrics, the American Heart Association, and the European Resuscitation Council. Resuscitation 1995;30(2):95 – 115. Lorenz JM. Survival of the extremely preterm infant in North America in the 1990s. Clin Perinatol 2000;27(2):255 – 62. Hack M, Fanaroff AA. Outcomes of children of extremely low birthweight and gestational age in the 1990’s. Early Hum Dev 1999;53(3):193 – 218.
Portuguese Abstract and Keywords A evoluc¸ a˜ o do diagno´ sticos, das te´ cnicas, das intervenc¸ o˜ es terapeˆ uticas, da organizac¸ a˜ o dos cuidados perinatais e factores socio-econo´ micos contribuı´ram para a sobreviveˆ ncia de rece´ m-nascidos com muito baixos peso a` nascenc¸ a e idade gestacional, apo´ s reanimac¸ a˜ o e cuidados intensivos. Se bem que a morbilidade nos primeiros anos de vida destas crianc¸ as na˜ o aumente, podem-se manifestar varias disfunc¸ o˜ es na idade escolar. Quais sa˜ o os limites dos cuidados intensivos para os rece´ m-nascidos? Sera´ correcto utilizar medidas te´ cnicas e econo´ micas extremas para rece´ m-nascidos com uma probabilidade de sobreviveˆ ncia limite? O que sera´ justifica´ vel para o rece´ m-nascidos, para a famı´lia, para sociedade e como interferira´ a legislac¸ a˜ o num processo de decisa˜ o que envolve o inı´cio, a suspensa˜ o ou a continuac¸ a˜ o dos cuidados intensivos? Damos um breve resumo histo´ rico do cuidado com os rece´ m-nascidos, seguido pelos resultados apo´ s reanimac¸ a˜ o e tratamento das crianc¸ as com muito baixo peso a` nascenc¸ a. Sa˜ o discutidas as estrate´ gias de abordagem e as recomendac¸ o˜ es publicadas. Pala6ras cha6e: E´ tica; Reanimac¸ a˜ o neonatal; RCP; Consentimento informado; Cuidados intensivos; Resultado final
Review article
Ethical aspects of cardiopulmonary resuscitation in premature neonates: where do we stand? Patrick J. Van Reempts *, Karel J. Van Acker Department of Pediatrics, Di6ision of Neonatology, Uni6ersity Hospital Antwerp, Wilrijkstraat 10, B-2650 Antwerp (Edegem), Belgium Received 12 February 2001; received in revised form 10 April 2001; accepted 12 June 2001
Abstract Advances in diagnosis, techniques, therapeutic interventions, organisation of perinatal care, and socio-economic factors have all contributed to the survival after resuscitation and intensive care of neonates with extremely low birth weight and gestational age. While morbidity during the first years of life in those infants does not increase, at school age multiple dysfunctions may become apparent. What are the limits of intensive care for the newborn? Is it right to use extreme technical and economic measures for neonates with a borderline chance of survival? What is justifiable for the neonate, the family, the society and how does legislation interfere in a decision process which involves starting, stopping or continuing intensive care? A short historical overview for the care of the newborn is given, followed by the outcome after resuscitation and treatment of the very low birth weight infant. Published management strategies and recommendations are discussed. © 2001 Elsevier Science Ireland Ltd. All rights reserved. Keywords: Ethics; Neonatal resuscitation; CPR; Informed consent; Intensive care; Outcome
1. Introduction Five to ten percent of babies are born prematurely or have a birth weight (BW) below 2500 g, while 1–2% have a gestational age (GA) below 28 weeks or a BW below 1000 g (extremely low BW infants). One percent of all newly born babies suffer from perinatal asphyxia and in 0.1% of them ischaemic encephalopathy develops. One in 1000 of these infants will die or develop a permanent severe mental disability. One to four percent of neonates present with minor or major congenital anomalies and 0.3 –0.5% arrive in a Neonatal Intensive Care Unit (NICU) with a severe, treatable or untreatable, congenital anomaly. Simple interventions at birth are capable of reducing mortality and morbidity to some extent: The International Committee on Resuscitation (ILCOR) has calculated that, world-wide, about 100 000 babies can be saved yearly from death or morbidity due to asphyxia if * Corresponding author. Tel.: +32-3-821-5802; fax: + 32-3-8214802.
simple appropriate measures are taken [1]. In other instances sophisticated resuscitation and intensive neonatal care is needed. The latter has developed tremendously over the last 20 years, but at the same time it has appeared that such treatment has its limits. The decision to resuscitate and treat the newborn may therefore pose heavy moral and ethical problems to the parents, the medical world and the society. In this paper an attempt is made to review these problems and to propose a number of strategies and recommendations based on the data in the literature.
2. Historical notes The attitude towards care of the neonate has changed regularly over time, influenced by cultural and religious factors, economic needs or the occurrence of epidemics, famine or wars. Infanticide and abstention from lifesustaining measures in very small or dysmorphic infants were, at certain periods, accepted procedures in these societies [2]. More recently the attitude towards the care
0300-9572/01/$ - see front matter © 2001 Elsevier Science Ireland Ltd. All rights reserved. PII: S 0 3 0 0 - 9 5 7 2 ( 0 1 ) 0 0 4 2 7 - 0
226
P.J. Van Reempts, K.J. Van Acker / Resuscitation 51 (2001) 225–232
Table 1 Percentage of survival according to GA
Lorenz, 2000 [73] Hack, 1991 [74] (world literature) EPICure, 2000 [21]
23 weeks
24 weeks
25 weeks
26 weeks
27 weeks
5–41 2–35 11 (CI: 7–15)
33–57 17–58 26 (CI: 22–31)
60–74 35–85 44 (CI: 39–49)
76–83
71–87
Refs. [21,73,74].
of the newborn also evolved. Between 1850 and 1950 it changed from the creation of an environment based on warmth, feeding, hygiene and attention to neutral care without any further measures (‘‘hands-off policy’’; ‘‘natural limit of viability policy’’) [3] and later, when the medical world had been alerted by accidents such as retinopathy of prematurity [3] and an increased mortality rate, towards an active and frankly aggressive therapeutic approach (‘‘hands-on policy’’; ‘‘all-out-rescue policy’’). Concurrently the parent’s fear of disability in their child replaced the fear of death [3]. Finally, from the 1950s on, remarkable progress was made in the field of organisation and technology for neonatal care leading to the creation of centres for prenatal and perinatal care [4], the adaptation of instruments to the neonate and the improvement of diagnostic, therapeutic armamentarium and surgical procedures [5– 7].
3. Mortality and morbidity in the newborn The improved organisation and technology for neonatal care has undoubtedly increased the survival rate in premature neonates as it has in full term neonates and infants with congenital anomalies. Compared to the 1960s, the use of neonatal intensive care has increased the survival rate from 7% to more than 60% in infants with a BW of 500 g and from 78 to 95% in those with a BW of 1500 g. Present survival rates based on the duration of pregnancy are well established but show a wide variation, especially for the extreme premature GA group (Table 1). Furthermore there is a broad variation in survival rate in newborns with identical GA when BW is considered. Therefore, because obstetricians may underestimate the chances of stillbirth, survival or disability in the newborn and thereby provide false information to the parents when using only GA as a prognostic criterion, it may be preferable to use BW as a more accurate indicator for immediate prognosis, especially in the delivery room. A practical guideline, taken from Boyle and Kattwinkel, is given in Table 2. These figures are influenced however by treatment. It is well established that resuscitation increases survival rate, especially in the higher BW group [8]. In Sauve´ ’s geographically based outcome study, the majority of neonates were stillborn when GA was 20
weeks and BW less than 500 g. From the 30% born alive in whom neonatal intensive care was initiated, 11% survived to 36 months and 69% had one or more major disabilities [9]. Tyson has shown that aggressive respiratory and cardiovascular treatment in infants with BW 500–800 g results only in an improvement in survival rate from 65 to 75% [10]. Regionalisation in Canada and the USA in the 1970s has led to an increase in perinatal survival rate from 48 to 85% in infants weighing less than 1500 g. It also became apparent that surfactant, especially when combined with prenatally administered corticosteroids to the mother, further decreased neonatal mortality [11– 13]. Although a lower mortality is still reported in level III perinatal centres as compared to level I or II, no difference in survival or disability rate between infants in utero and infants transported after birth has been observed by others [14]. As survival rate figures are influenced by such factors as prenatal use of steroids, presence of fatal compromise, accuracy of GA, willingness to perform caesarean section and even gender or race, statistics on, and prediction, of survival rates in newborns should be viewed with caution. Each region or tertiary unit must review its own mortality and survival data to be able to counsel parents properly [15,16]. Some argue that predictions on survival are far less accurate when based on single, i.e. small, unit performance [17,18]. Morbidity in the surviving neonate may be confined to the neonatal period or may be a long-term event. It may be related to the gestation or birth or/and may be due to the therapeutic measures that have been taken. The Vermont Oxford Network Experience reports severe (grade III or IV) intraventricular haemorrhage (IVH) in 15.4% of infants weighing 400–1500 g who Table 2 Survival according to birth weight Birth weight (g)
Survival rate (%)
400–499 500–599 600–699 700–799 800–999
10–20 20–55 50–62 60–75 80–90
Adapted from Boyle and Kattwinkel [38].
P.J. Van Reempts, K.J. Van Acker / Resuscitation 51 (2001) 225–232
227
survived CPR and in 4.9% of those who did not undergo CPR in the delivery room. Survival without IVH occurred in 52.2 and 81.2%, respectively [19]. Thirty percent of the infants between 500 and 750 g and 10% of those weighing 750– 1000 g developed severe uni- or bilateral blindness. Grade III or greater IVH was found by Hack in 10– 83% of newborns with GA of 23 weeks, in 17– 45% with GA of 25 weeks and in 10–22% with GA exceeding 25 weeks. Severe clinical symptoms were present in 30, 17– 45 and 16–71%, respectively. Chronic lung disease occurs in 50– 70% of survivors with GA of 23 weeks, 33– 89% with GA of 24 weeks and 16–71% with GA of 25 weeks [20]. It has recently been reported that the need for oxygen domiciliary therapy at 1 year of age is 24% when GA is 23 weeks, 13% at 24 weeks and 7% at 25 weeks [21]. Long-term problems, medical as well as social, have emerged as a consequence of CPR at birth and NIC. We are confronted now with developmental problems, growth disturbance and the need for repeated surgical interventions for complex congenital anomalies. Some children need to be admitted to rehabilitation centres. There are indications for an increased risk for child neglect or abuse [22,23].
the health care costs in children (10% of those for children up to 15 years in the USA) and of the whole population [16]. Third, the costs may be reduced by certain therapeutic measures, such as prenatal corticoids and postnatal surfactant administration [12], [25– 29]. Fourth, the right of society to allocate costly resources to the old rather than to the very young, can be debated [30]. Finally, some expensive treatments in the neonate which have been shown to be efficacious, may be more justified than some others in adults whose efficacy remains to be demonstrated [31–34]. As for the long-term costs, an increasing number of surviving low BW infants need continuing care and some must be admitted to rehabilitation centres. These costs can be estimated and should be taken into consideration. However, the relationship between perinatal problems and long-term physical and cognitive development is not well established and persisting adverse environmental factors such as a low socio-economic situation and low quality of follow-up may be more important [35] and should therefore also be addressed [36,37]. The problem for the society is that the organisation of intensive neonatal care and the provision of the right social environment cannot be separated.
4. Implications of neonatal intensive care for the family, the doctor and the society
5. Who should take the decision to start or to stop treatment?
The aim of neonatal resuscitation should be the qualitatively acceptable survival of the child with no or little need for continuous medical support, as little mental and physical suffering as possible, integration in the society with the possibility to interact with his/her environment and a reasonable life expectancy. The costs of the NIC, which follow resuscitation, should not exceed the financial capability of the community in which the child is born. Thus the decision to initiate or withhold NIC and to continue or stop such treatment, should be based on as much knowledge as possible. For the doctor this supposes not only a thorough insight into the relevant literature data, but also knowledge of the centre where the child is born. This will enable the provision of correct information to the parents and family who should also be involved in the decision making. A question that needs to be discussed briefly is that of the costs of NIC for the society. It is a fact that, since NIC was applied in infants below 1500 g, these costs have risen tremendously. However, although it must be accepted that the society has the obligation to set priorities when providing resources, the following arguments in favour of NIC should be considered. First, the costs are relatively small when compared to those of certain treatments in adults [24]. Second, costs of NIC in low BW infants represent only a fraction of
At first sight it appears logical that the parents and the family should make the final decision to initiate treatment or not in their child. This should, however, be put into the right perspective. Indeed, the question can be asked if the parents are capable of taking rational decisions in such emotionally and physically stressful circumstances. Furthermore, their decision may be influenced by religious and cultural considerations. It can therefore be feared that in many instances they may reach decisions that are not in the interest of their child, themselves or society and differ from that of the other parties involved. Other confusing circumstances may be that the baby needs to be transported immediately after birth and that the parents are not available for discussion or that the clinical situation at birth is better than anticipated and that resuscitation and treatment is nevertheless started by the physician [38–40]. Lee, using a questionnaire, was able to show that more than 90% of the parents opted for active treatment of infants with a BW of less than 1500 g, as opposed to 21% of the nurses and 50% of the paediatricians. On the question of who should take the final decision to treat or to withhold treatment in very low BW infants, more than 90% of the parents thought that they were entitled to do so, whereas nurses and paediatricians were convinced that they should be heavily involved [41]. It is apparent that correct information for
228
P.J. Van Reempts, K.J. Van Acker / Resuscitation 51 (2001) 225–232
the parents before the birth of the child is of utmost importance. Adequate information may, however, be impossible to assimilate when the parents are young, inexperienced or poorly educated. Doron found that not initiating treatment at birth was considered by the parents to be an issue only if the physician had suggested it. In this study 69% of the parents had voiced their wishes before delivery and had decided how much treatment their child should receive after delivery. In 59% there was agreement between parents and physician, although the former showed a more aggressive approach towards resuscitation. Mortality was highest when there was disagreement between parents and physicians. When parents had been well informed there was less overtreatment. The time of death was not influenced by the identity of the person who took the responsibility nor by disagreement [42]. As for the decision to end treatment, a European survey showed that in preterm infants with perinatal asphyxia or in whom complications had occurred, the opinion of the parents influenced the paediatrician’s decision only if continuation of treatment was decided: decisions to end life were not taken when the parents did not consent [43]. Parents, according to a Scottish study, want to be active participants in the decision process, but they need complete and honest information, as well as time to understand the full meaning of a bad prognosis [44]. The decision of the health care pro6ider may be the result of a wish to perform a technique, or ambition or fear of legal implications. Therefore, this decision is not always in accordance with the needs of the family or the society. In Lee’s study, 90% of the nurses and 50% of the paediatricians mentioned severe disability as their main ethical ground for not treating a newborn. Both groups also took the socio-economic situation of the family into consideration. The attitude of the parents was considered as very important while the costs of care did not play a major role, especially for nurses [41,45]. A survey of the attitude of Danish physicians revealed that most would treat at birth a newborn of 24 weeks but would withhold more intensive treatment or even withdraw treatment if severe complications did occur. There was general agreement that life-prolonging procedures should be used even in relatively severe cases if this was the parent’s wish, but that life should not be saved at all costs [46]. Few data exist on the physician’s attitude towards resuscitation of the newborn. In Catlin’s study 96% of physicians would resuscitate extremely low BW infants invoking their role as physician, being trained to save lives, the hazard of determining GA accurately or the request of the parents. It appeared that they found themselves unable to predict which neonates had a chance of intact survival, that they had had conflicts with their colleagues about the viability of the infants and some were severely distressed by the suffering of
the babies. Their decisions were not influenced by statistics on survival, legal constraints or costs of care. Common requests were: clear delineation of ethical criteria for resuscitation, guidelines on information to be given to parents before delivery and support by other the physicians [47]. In a Dutch study physicians felt that quality of life should be considered in the decision to end life [15,43]. Recently a Scottish study demonstrated that the medical team’s perception of who took the final decision to end life differed from that of the parents: doctors and nurses believed that they had made this decision in view of the heavy responsibility [48]. The suggestion that neurodevelopmental morbidity may be equally high whether or not resuscitation is performed in extremely premature neonates is an argument in favour of parental involvement [49]. Medical Ethics Committees, by reducing complex ethical dimensions to simple processes and procedures, may have a role to play when conflicts have arisen between parents and doctors. However, as they dilute the global responsibility, and as there is no proof that they influence the parent’s decision, they have a limited function in the final decision. Nurses consider ethics committees as important [41,50]. As for official institutions such as the Department of Justice or the Ministry of Health, parents, nurses and paediatricians felt that they did not need to be involved in the decision making [41,51,52]. Most paediatricians in The Netherlands are of the opinion that end-of-life decisions should be publicly reviewed, preferably by a committee of independent medical, judicial and ethics professionals rather than by a public prosecutor [15].
6. Existing guidelines for the management of neonatal intensive care Guidelines on life or death strategy in pre-term neonates have been formulated in different countries. In Australia, Murton suggested that adequate care should be provided for infants above 800 g or 27 weeks of GA but cannot be justified below 750 g or 25 weeks; in between there is a grey zone [53]. In Canada, Swyer set the limit at 24 weeks of GA or above 500 g BW, a limit ensuring intact survival within present knowledge and technology [40]. Davis, however, stated that treatment was justified only for infants above 750 g (Davis, 1993, c 642). The Canadian Paediatric Society and the Society of Obstetricians and Gynaecologists suggested in 1994 that treatment at 22 completed weeks of gestation should be started only at the request of fully informed parents or when it appears that the GA has been underestimated. At 23–24 weeks resuscitation may be started if the parents have agreed to the reversibility of this decision according to the infant’s condition at birth. At 25 weeks resuscitation should be attempted in
P.J. Van Reempts, K.J. Van Acker / Resuscitation 51 (2001) 225–232
all infants without lethal anomalies [54]. In the USA the attitude in acute situations at birth, depending on the estimated GA, BW and clinical condition was to treat neonates actively if the parents could not be involved in the decision. In chronic situations the decision was left to the parents [55]. In 1995 the American Academy of Paediatrics and the American College of Obstetricians and Gynaecologists provided suggestions for counselling when the infant’s GA was 23 – 25 weeks, but no specific recommendations for resuscitation [56]. In the United Kingdom the British Association of Perinatal Medicine has issued a number of practical suggestions for the care of extremely immature infants of 22–26 weeks of gestation. Emphasis is put on communication before birth, assessment of GA and option for intrauterine transfer. It states that resuscitation of infants with GA less than or equal to 22 weeks should be undertaken only in controlled circumstances in tertiary centres and proposes a detailed management approach for infants between 22 and 27 weeks gestation. Neonates born between 22 and 28 weeks gestation, are within the viability limits and that thorough prenatal and postnatal counselling and involvement of the parents, interaction between senior perinatologists and information on the follow-up, is essential for this group [57]. In 1994 Doyal proposed to stop treatment when death is unavoidable, when brain damage is so severe that selfdeployment is impossible, when cognitive function is extremely limited and future physical fitness is improbable or when, with sufficient cognitive function, extreme physical disability is present [58]. Provisional intensive care until the prognosis can be improved remains, however, a possibility provided that the parents understand the implications of the aggressive approach and that the care givers are willing to withdraw an ineffective treatment or when the outcome becomes very problematic [59,60]. The Royal College of Paediatrics and Child Health advised to withhold treatment in the following three situations: the no-chance-situation, the no-purpose-situation with massive physical or mental impairment, and the unbearable situation with progressive and irreversible illness. Newborns who do not fit into these categories or with uncertain classification, should receive the best care available. It is recognised that medication that may shorten life can be used, but only for the benefit of the patient. If arrest of ventilatory support does not result in death, euthanasia is inappropriate and palliative and comforting care should be provided [61]. A document from The Netherlands insists on the importance of openness, thoughtfulness and contact between parents and health care providers when treatment decisions are discussed in cases without any chance for survival or for a qualitatively unacceptable life [62]. International guidelines on resuscitation with an evidence based approach and expert opinion were pub-
229
lished in 2000. They stated that non-initiation of resuscitation in a newborn could be defended when GA is less than or equal to 23 weeks, in anencephaly and in confirmed trisomy 13 and 18. When the prognosis is uncertain or when GA is inaccurate, a therapeutic trial with the option of subsequent withdrawal can be considered. Discontinuation of resuscitation should be considered when no spontaneous circulation occurs after 15 min of CPR in an infant with cardiorespiratory arrest [52]. Recently, in France, the ‘‘Fe´ de´ ration Nationale des Pe´ diatres Ne´ onatologistes’’ issued general recommendations on end of life decisions. It gives a framework (general considerations, obligations of the medical and caregiving team, special circumstances) through which perinatal caregivers should come to a humane, socially and ethically justifiable decision, based on beneficence, non-maleficence and equality in the utmost interest of the infant, but with less emphasis on the parents’ autonomy than in Anglo-Saxon recommendations. It suggested that in certain situations with irreversible complications, but with further well being of the infant, active termination of life could be debatable [63]. Dutch paediatricians have been involved in active termination of life with the parents’ consent [64].
7. Providing information Involvement of the parents in the decision process implies that they have a correct insight as to care is ethically justified, optional or still the subject of investigation. Few parents, however, wish to be told facts and statistics and then be left by themselves to decide. The ethical arguments that they can be offered, aside from the legal aspects, should aim at preserving life, avoiding suffering and damage, preserving the patient’s autonomy and using the available medical resources. The parents need to understand that an aggressive approach cannot be justified if the chance for survival is limited or the long-term outcome questionable. It must also be realised that decisions taken in the interest of the child will limit the parent’s authority while those taken in the interest of the family will limit the child’s opportunity. Also, most parents will be reluctant to accept morally based decisions from people who will never have to care for the child [61]. What then is the basic care that should be provided in all cases including resuscitation? Some authors have defined this care as the one that is not futile or meaningless, and is based on criteria, as experience has shown, there is a failure rate of 97%. However, as obstetrical and neonatal care are in constant evolution, such criteria do not provide a safe base for the definition of this care [65]. Evidence based medicine, which takes into account the quality of the available data, identifies the advantages, the dangers and the costs of
230
P.J. Van Reempts, K.J. Van Acker / Resuscitation 51 (2001) 225–232
treatment and which recognises the personal value of the patient, appears to be a better base to ensure a reasonable treatment [66]. As it is the only correct and safe way to evaluate treatment modalities, the neonate may be included in a randomised controlled trial (RCT) which, in the case of non-effectiveness, has the ethical advantage of exposing a minimum of patients. Parents need to be aware of this approach and should agree only after they have had the opportunity to reflect and to consult other sources [65,67,68].
8. Neonatal intensive care and the law In some countries a legal basis is available for the solution of ethical problems that arise when resuscitation and neonatal intensive care is considered or applied. In most European countries this legal basis is provided by civil codes, some of which have law enforcement. The UK uses common law and law enacted by the government. Laws which limit treatment differ according to the country, although most agree that aggressive treatment is not to be encouraged and that parents have the right to decide for their infants except when an urgent situation makes this impossible [69]. In the UK, for example, in case of an urgent but treatable condition the physician has the duty, independently from the parent’s viewpoint, to treat before additional harm occurs. This does not apply to futile treatment. In uncertain conditions, treatment should be given until the situation is clarified [61]. In many cases, however, no legal framework is available. Medical ethics codes such as the Hippocratic oath, the Geneva Declaration or the International Code of Medical Ethics, require the doctor to give absolute priority to the patient’s welfare [70]. It has been advocated that, when neonatal care is obviously mandatory e.g. when birth weight exceeds 1500 g or GA is more than 31 weeks, and equally in the unlikely situation of a BW below 300 g or a GA of 20 weeks, parents should not be involved in the decision process. If there is no emergency, the physician has no duty to treat, especially when the treatment is futile (no chance, no purpose, unbearable); in this event he/she, and not the parents, also has the authority to decide [65].
9. Conclusions Modern techniques have made it possible to rescue an increasing number of neonates with extremely low GA. Many of them have to be resuscitated at birth and during initial treatment, with the possibility of immediate or long-term complications. A number of questions have arisen related to the ethics of these treatments.
The most important is who should take the final decision to initiate, continue or stop treatment. But first it should be agreed that the initial step consists of prevention of prematurity and neonatal asphyxia, implying well-equipped perinatal centres and maternity units in terms of personnel and facilities which are able to provide essential perinatal care with 24 h coverage. As to the questions when to initiate, continue or stop resuscitation and treatment in premature neonates, recommendations have been issued in different countries which may provide a basis for our decisions. At present it seems justifiable in terms of survival and long-term morbidity to apply resuscitation and intensive care from 25– 26 weeks on. At 23–24 weeks a flexible approach is recommended. Common sense and intuition remain, however, necessary in deciding what is in the best interest of the particular infant and family and causes the least harm. The question of who should take the final decision on life or death is a difficult one and is frequently perceived differently by the parents and the medical team. We believe that it is essential that the parents and health care providers should reach an agreement and, as has been recently stated, parents and care givers should ‘‘evaluate together what is in the best interest of the infant and react accordingly’’ [71]. From the medical teams’ side this implies good insight into the parents’ situation, which should be gained before the birth, and a structured but flexible approach to the problem involving other care takers and leaving room for other options. Recent national mortality and morbidity statistics related to GA are very helpful in counselling parents. Medical Ethics Committees play only a subsidiary role and official institutions should not be involved. During the birth of the child, local protocols and strategies, approved by the local ethics committee, should be used. Preferably they should be improved regularly by a quality control audit. New therapeutic measures need to be subjected to randomised controlled trials. An Utstein analysis on this subject, with standardised reporting of patient data and based on empirical evidence or, if possible, evidence based medicine, may be helpful to make more uniform recommendations [72]. Finally, resources should be made available not only for better perinatal care but also for the support of these infants after they have left the neonatal unit. Further research in this problem is needed, focusing on the different perception of the parents and the medical team about responsibility and autonomy, the needs and aspirations of parents in the perinatal period, information for the parents and their participation in the decision process and the consequences of the latter [48].
P.J. Van Reempts, K.J. Van Acker / Resuscitation 51 (2001) 225–232
References [1] Kattwinkel J, Niermeyer S, Nadkarni V, et al. Resuscitation of the newly born infant: an advisory statement from the Pediatric Working Group of the International Liaison Committee on Resuscitation. Resuscitation 1999;40(2):71 –88. [2] Bloch H. Abandonment, infanticide, and felicide. An overview of inhumanity to children. Am J Dis Child 1988;142:1058 –60. [3] Baker JP. The incubator controversy: pediatricians and the origins of premature infant technology in the United States, 1890 to 1910. Pediatrics 1991;87(5):654 – 62. [4] Avery GB, Fletcher MA, MacDonald ME. Pathophysiology and management of the newborn. Lippincott Co, 1994. [5] Ment LR, Schneider KC, Ainley MA, Allan WC. Adaptive mechanisms of developing brain. The neuroradiologic assessment of the preterm infant. Clin Perinatol 2000;27(2):303 – 23. [6] Ohlsson A, Lacy J. Perinatal epidemiology. Curr Opin Pediatr 1993;5:142 – 9. [7] Whitelaw A. Functional imaging in neonatal neurology. Acta Paediatr 1994;83:3345 –7. [8] Finer NN, Barrington KJ. Decision-making in delivery room resuscitation: a team sport [comment]. Pediatrics 1998;102(3 Pt 1):644 – 5. [9] Sauve´ RS, Robertson C, Etches P. Before viability: A geographically based outcome study of infants weighing 500 grams or less at birth. Pediatrics 1998;101:438 –45. [10] Tyson JE, Younes N, Verter J, et al. Viability, mortality and resource among newborns of 501 – 800 g birth weight. J Am Med Assoc 1996;276:1645 –51. [11] Mugford M. A review of the economics of care for sick newborn infants. Community Med 1988;10:99 – 111. [12] Mugford M, Howard S. Cost effectiveness of surfactant replacement in preterm babies. Pharmacoeconomics 1993;3:362 – 73. [13] Schwartz RM, Luby AM, Scanlon JW, Kellogg RJ. Effect of surfactant on morbidity, mortality, and resource use in newborn infants weighing 500 to 1500g. N Engl J Med 1994;330:1476 – 80. [14] Field D, Draper ES. Survival and place of delivery following preterm birth: 1994 –96. Arch Dis Child Fetal Neonatal Ed 1999;80(2):F111 – 4. [15] Kollee LA, van der Heide A, de Leeuw R, van der Maas PJ, van der Wal G. End-of-life decisions in neonates. Semin Perinatol 1999;23(3):234 – 41. [16] Lewit EM, Baker LS, Corman H, et al. The direct cost of low birth weight. Future Child 1995;5(35). [17] Draper ES, Manktelow B, Field DJ, James D. Prediction of survival for preterm births by weight and gestational age: retrospective population based study. Br Med J 1999;319(7217):1093 – 7. [18] Draper ES, Manktelow B, Field DJ, James D. Prediction of survival for preterm infants [letter]. Br Med J 2000;321:237. [19] Finer NN, Horbar JD, Carpenter JH. Cardiopulmonary resuscitation in the very low birth weight infant: the Vermont Oxford Network experience. Pediatrics 1999;104(3 Pt 1):428 – 34. [20] Hack M, Fanaroff AA. Outcomes of children of extremely low birthweight and gestational age in the 1990s. Semin Neonatol 2000;5(2):89 – 106. [21] Costeloe K, Hennessy E, Gibson AT, Marlow N, Wilkinson AR. The EPICure study: outcomes to discharge from hospital for infants born at the threshold of viability. Pediatrics 2000;106(4):659 – 71. [22] Silverman WA. Setting a limit in the treatment of neonates: All or none? Persp Biol Med 1989;32:111 –28. [23] Zupancic JA, Richardson DK, Lee K, McCormick MC. Economics of prematurity in the era of managed care. Clin Perinatol 2000;27(2):483 – 97.
231
[24] The Victorian Infant Collaborative Study Group. Changing outcome for infants of birth-weight 500 – 999 g born outside level 3 centres in Victoria. Aust NZ J Obstet Gynaecol 1997;37(3):253 – 7. [25] Boyle MH, Torrance GW, Sinclair JC, Horwood SP. Economic evaluation of neonatal intensive care of very low birth weight infants. N Engl J Med 1993;308:1330 – 7. [26] Drummond MF, Stoddard GL, Torrance GW. Methods for the economic evaluation of health care programmes. Oxford University Press edition. Oxford; 1987. p. 112 – 48. [27] Hernandez JA, Offut TJ, Butterfeld LJ. The Cost of Care of the Less than 1000 g infant. Clin Perinatol 1986;13:461 – 76. [28] Office of Technology Assessment. Neonatal intensive care for low birthweight infants: costs and effectiveness. Washington, DC, 1987; vol Health Technology. [29] The Victorian Infant Collaborative Study Group. Economic outcome for intensive care of infants of birthweight 500 –999 g born in Victoria in the post surfactant era [see comments]. J Paediatr Child Health 1997;33(3):202 – 8. [30] Lantos JD, Mokalla M, Meadow W. Resource allocation in neonatal and medical ICUs. Epidemiology and rationing at the extremes of life. Am J Respir Crit Care Med 1997;156(1):185 –9. [31] Hintz SR, Suttner DM, Sheehan AM, Rhine WD, Van Meurs KP. Decreased use of neonatal extracorporeal membrane oxygenation (ECMO): how new treatment modalities have affected ECMO utilization. Pediatrics 2000;106:6. [32] Roy BJ, Rycus P, Conrad SA, Clark RH. The changing demographics of neonatal extracorporeal membrane oxygenation. Patients reported to the Extracorporeal Life Support Organization (ELSO) registry. Pediatrics 2000;106:6. [33] Weinstein MC. High-priced technology can be good value for money. Ann Intern Med 1999;130(10):857 – 8. [34] Zupancic JA. Invited comment on economic evaluation and randomised controlled trial of extracorporeal membrane oxygenation: UK collaborative trial. Evidence Based Med 1999;4(128). [35] Rutter M, Casaer P, editors. Biological risk factors for psychosocial disorders. Cambridge University Press; 1991. [36] Cohen SE, Parmelee AH, Sigman M, Beckwith L. Antecedents of school problems in children born preterm. J Pediatr Psychol 1988;13(4):493 – 507. [37] Hack M, Breslau N, Weissman B, Aram D, Klein N, Borawski E. Effect of very low birth weight and subnormal head size on cognitive abilities at school age. N Engl J Med 1991;325(4):231 – 7. [38] Boyle RJ, Kattwinkel J. Ethical issues surrounding resuscitation. Clin Perinatol 1999;26(3):779 – 92. [39] Sonnenblick M, Friedlander Y, Steinberg A. Dissociation between the wishes of terminally ill patients and the decisions by their offspring. J Am Geriatr Soc 1993;41:599 – 604. [40] Swyer PR. How small is too small? A personal opinion. Acta Paediatr 1992;81:443 – 5. [41] Lee SK, Penner PL, Cox M. Comparison of the attitudes of health care professionals and parents toward active treatment of very low birth weight infants. Pediatrics 1991;88:110 – 4. [42] Doron MW, Veness-Meehan KA, Margolis LH, Holoman EM, Stiles AD. Delivery room resuscitation decisions for extremely premature infants. Pediatrics 1998;102(3):574 – 82. [43] van der Heide A, van der Maas PJ, van der Wal G, Kollee LAA, de Leeuw R, Holl RA. The role of parents in end-of-life decisions in neonatology: physicians’ views and practices. Pediatrics 1998;101(3 Pt 1):413 – 8. [44] McHaffie HZ, Lyon AJ, Hume R. Deciding on treatment limitation for neonates: the parents’ perspective. Eur J Pediatr 2001;160:339 – 44. [45] Vaux KL. Ethical issues in caring for tiny infants. Clin Perinatol 1986;13:477 – 84.
232
P.J. Van Reempts, K.J. Van Acker / Resuscitation 51 (2001) 225–232
[46] Norup M. Limits of neonatal treatment: a survey of attitudes in the Danish population. J Med Ethics 1998;24(3):200 –6. [47] Catlin AJ, Stevenson DK. Physicians’ neonatal resuscitation of extremely low-birth-weight preterm infants. Image J Nurs Sch 1999;31(3):269 – 75. [48] McHaffie HE, Laing IA, Parker M, McMillan J. Deciding for imperilled newborns: medical authority or parental autonomy? J Med Ethics 2001;27(2):104 –9. [49] Saigal S. The limits of viability. Pediatr Res 2001;49(4):451. [50] Lee SK, Penner PL, Cox M. Impact of very low birth weight infants on the family and its relationship to parental attitudes. Pediatrics 1991;88:110 –4. [51] Clara R. Euthanasie bij pasgeborenen. In: Bioethiek, ethische, medische en wetenschappelijke perspectieven op de morele problemen van de biotechnologie. VUB Press, 1990:75 – 90. [52] Niermeyer S, Kattwinkel J, Van Reempts P, et al. International Guidelines for Neonatal Resuscitation: An excerpt from the Guidelines 2000 for Cardiopulmonary Resuscitation and Emergency Cardiovascular Care: International Consensus on Science. Contributors and Reviewers for the Neonatal Resuscitation Guidelines. Pediatrics 2000;106(3):E29. [53] Murton LJ, Doyle L, Kitchen WH. Care of very low birth weight infants with limited neonatal intensive resources. Med J Austr 1987;146:78 – 81. [54] Fetus and Newborn Committee CPSM-FMCSoOaGoC. Management of the woman with threatened birth of an infant of extremely low gestational age. Fetus and Newborn Committee, Canadian Paediatric Society, Maternal –Fetal Medicine Committee, Society of Obstetricians and Gynaecologists of Canada. Can Med Assoc J 1994;151(5):547 –53. [55] Lantos JD, Tyson JE, Allen A, Frader J, Hack M, et al. Withholding and withdrawing life sustaining treatment in neonatal intensive care: issues for the 1990s. Arch Dis Child 1994;71:F218 – 23. [56] American Academy of Pediatrics Committee on Fetus and Newborn, American College of Obstetricians and Gynecologists Committee on Obstetric Practice. Perinatal care at the threshold of viability [see comments]. Pediatrics 1995;96(5 Pt 1):974 – 6. [57] British Association of Perinatal Medicine (Gee G, Dunn PobotBec. Fetuses and Newborn Infants at the Threshold of Viability: A Framework for Practice. 2000; http://www.bapm-london.org/ publications/threshold.pdf.) [58] Doyal L, Wilsher D. Towards guidelines for withholding and withdrawal of life prolonging treatment in neonatal medicine. Arch Dis Child Fetal Neonatal Ed 1994;70(1):F66 –70. [59] Fischer AF, Stevenson DK. The consequences of uncertainty.
[60] [61]
[62] [63]
[64] [65]
[66]
[67] [68]
[69]
[70] [71]
[72]
[73] [74]
An empirical approach to medical decision making in neonatal intensive care. J Am Med Assoc 1987;258(14):1929 – 31. Kraybill EN. Ethical issues in the care of extremely low birth weight infants. Semin Perinatol 1998;22(3):207 – 15. Stenson B, McIntosh N. Some ethical considerations in the neonatal intensive care area. Eur J Pediatr 1999;158(Suppl 1):S13– 7. Nederlandse Vereniging voor Kindergeneeskunde. Doen of laten. Utrecht, 1992. Fe´ de´ ration Nationale des Pe´ diatres Ne´ onatologistes. Dilemmes Ethiques de la Pe´ riode Pe´ rinatale: Recommendations pour les de´ cisions de fin de vie (abstention, limitations, arreˆ t des traitements et arreˆ t de vie). 2000; http://www.societefrancaisepediatrie. asso.fr/. Versluys Z, de Leeuw R. A Dutch report on the ethics of neonatal care. J Med Ethics 1995;21(1):14 – 6; [discussion] 17 –8. Tyson J. Evidence-based ethics and the care of premature infants. In: Behrman RE, editor. The future of children. Low birth weight edition. Vol. 5. Centre for the future of children. The David and Lucie Packard Foundation, 1995:197 – 213. Evidence-Based Medicine Working Group. Evidence-based medicine. A new approach to teaching the practice of medicine. J Am Med Assoc 1992;268(17):2420 – 5. Silverman WA. Human experimentation in perinatology. Clin Perinatol 1987;14(2):403 – 16. Tyson JE. Use of unproven therapies in clinical practice and research: how can we better serve our patients and their families? Semin Perinatol 1995;19(2):98 – 111. McHaffie HE, Cuttini M, Brolz-Voit G, et al. Withholding/withdrawing treatment from neonates: legislation and official guidelines across Europe. J Med Ethics 1999;25(6):440 – 6. Beauchamp TL, Childress JF. Principles of biomedical ethics, 3rd ed. New York: Oxford University Press, 1989. Sauer PJ, and the members of the Working Group. Ethical dilemmas in neonatology: recommendations of the Ethics Working Group of the CESP (Confederation of European Specialists in Paediatrics). Eur J Pediatr 2001;160:364 – 8. Zaritsky A, Nadkarni V, Hazinski MF, et al. Recommended guidelines for uniform reporting of pediatric advanced life support: the Pediatric Utstein Style. A statement for healthcare professionals from a task force of the American Academy of Pediatrics, the American Heart Association, and the European Resuscitation Council. Resuscitation 1995;30(2):95 – 115. Lorenz JM. Survival of the extremely preterm infant in North America in the 1990s. Clin Perinatol 2000;27(2):255 – 62. Hack M, Fanaroff AA. Outcomes of children of extremely low birthweight and gestational age in the 1990’s. Early Hum Dev 1999;53(3):193 – 218.
Portuguese Abstract and Keywords A evoluc¸ a˜ o do diagno´ sticos, das te´ cnicas, das intervenc¸ o˜ es terapeˆ uticas, da organizac¸ a˜ o dos cuidados perinatais e factores socio-econo´ micos contribuı´ram para a sobreviveˆ ncia de rece´ m-nascidos com muito baixos peso a` nascenc¸ a e idade gestacional, apo´ s reanimac¸ a˜ o e cuidados intensivos. Se bem que a morbilidade nos primeiros anos de vida destas crianc¸ as na˜ o aumente, podem-se manifestar varias disfunc¸ o˜ es na idade escolar. Quais sa˜ o os limites dos cuidados intensivos para os rece´ m-nascidos? Sera´ correcto utilizar medidas te´ cnicas e econo´ micas extremas para rece´ m-nascidos com uma probabilidade de sobreviveˆ ncia limite? O que sera´ justifica´ vel para o rece´ m-nascidos, para a famı´lia, para sociedade e como interferira´ a legislac¸ a˜ o num processo de decisa˜ o que envolve o inı´cio, a suspensa˜ o ou a continuac¸ a˜ o dos cuidados intensivos? Damos um breve resumo histo´ rico do cuidado com os rece´ m-nascidos, seguido pelos resultados apo´ s reanimac¸ a˜ o e tratamento das crianc¸ as com muito baixo peso a` nascenc¸ a. Sa˜ o discutidas as estrate´ gias de abordagem e as recomendac¸ o˜ es publicadas. Pala6ras cha6e: E´ tica; Reanimac¸ a˜ o neonatal; RCP; Consentimento informado; Cuidados intensivos; Resultado final