Critical care decisions in fetal and neonatal medicine: ethical issues
Borderline of viability
19 In this Report, the term ‘borderline of viability’ is used to describe the time of birth of extremely premature babies who are born alive at or before the gestational age of 25 weeks, six days. Babies are born this early because of spontaneous labour or because they are delivered early to safeguard the health of the baby and/or the mother. At these stages of gestation, the prospects of healthy survival are reduced, often necessitating critical care decisions after birth.
20 Neither case law nor statute currently provides a sufficiently accurate and certain definition of ‘born alive’ appropriate for use in the light of modern medicine and technology. The Working Party recommends that the Royal College of Obstetricians and Gynaecologists (RCOG) and RCPCH, together with BAPM and the Royal College of Midwives (RCM), should consult widely and develop a definition of ‘born alive’ which encompasses the capacity of a baby to breathe either independently, or with the support of a ventilator. Consideration should be given to incorporating such a definition in statute (paragraphs 8.13–8.16).
21 The extent to which parents are consulted in advance about the initiation of intensive care appears to vary across the UK. We strongly endorse the recommendations of the RCPCH and BAPM that, wherever possible, when the birth of a baby which is extremely premature or which is affected by significant abnormalities is expected, before the birth an experienced neonatologist should discuss options for admission to intensive care. We encourage the Royal Colleges and National Health Service (NHS) to find ways to foster a common approach by obstetricians, midwives, nurses and neonatologists (paragraph 9.12).
22 Current practice in most neonatal units in the UK is usually to resuscitate a baby if the outcome is uncertain and to institute intensive care until the outlook is clearer. The legal obligation is to provide appropriate care, which does not necessarily include admission to a neonatal intensive care unit. We consider that babies should not be subjected to intensive interventions that are not likely to have any benefit and which may cause suffering. We recommend that the RCPCH and BAPM, together with the RCOG, RCM, Royal College of Nursing (RCN) and other associated professional bodies, should consider the development of guidelines for deciding to institute resuscitation and full intensive care for babies born below 26 weeks of gestation, consulting as appropriate, including with groups that advocate for parents.3 We do not regard this as an appropriate matter for legislation in the UK. We propose below a set of guidelines to provide a basis for discussion by these bodies as we believe that clearer guidance would encourage more openness, greater consistency in practice and firmer expectations for parents (paragraphs 8.24–8.25 and 9.14–9.19).
Proposed guidelines for deciding to institute intensive care
23 The guidance for deciding to institute resuscitation and full intensive care should include:
(a) An experienced paediatrician should be present at the delivery and make a confirmatory assessment of the gestational age and condition of the baby.
(b) At 25 weeks of gestation and above, the relatively high rate of survival and the relatively low risk of severe disability are such that intensive care should be initiated and a baby admitted to a neonatal intensive care unit, unless he or she is known to be affected by some severe abnormality incompatible with any significant period of survival.
Below 25 weeks of gestation, where the delivery of an extremely premature baby is anticipated and circumstances permit, the clinical team should discuss with the parents in a thorough and frank fashion, the national and local statistical evidence for survival and the range of disabilities which are indicated for this age group. In the consultation with the parents, the healthcare team should make it clear that statistics indicate that most babies born below 25 weeks of gestation will die.
(c) Between 24 weeks, 0 days and 24 weeks, six days of gestation, normal practice should be that a baby will be offered full invasive intensive care and support from birth and admitted to a neonatal intensive care unit, unlessthe parents and the clinicians are agreed that in the light of the baby’s condition (or likely condition) it is not in his or her best interests to start intensive care.
(d) Between 23 weeks, 0 days and 23 weeks, six days of gestation, it is very difficult to predict the future outcome for an individual baby based on current clinical evidence for babies born at this gestation as a whole. Precedence should be given to the wishes of the parents regarding resuscitation and treatment of their baby with invasive intensive care. However, when the condition of a baby indicates that he or she will not survive for long, clinicians are not legally obliged to proceed with treatment wholly contrary to their clinical judgement, if they judge that treatment would be futile (see paragraph 8.32). As a first step, it will be necessary to determine whether a baby is suffering, whether any suffering can be alleviated, and the likely burden placed on the baby by intensive care treatment (see paragraph 9.32). Where parents would prefer that the clinical team made the decision about whether or not to initiate intensive care, the clinicians should determine what constitutes appropriate care for that particular baby. Where there has not been an opportunity to discuss a baby’s treatment with the mother (and where appropriate her partner) prior to the birth, the clinical team should consider offering full invasive intensive care until a baby’s condition and treatment can be discussed with the parents.
(e) Between 22 weeks, 0 days and 22 weeks, six days of gestation, standard practice should be not to resuscitate a baby. Resuscitation would normally not be considered or proposed. Only if parents request resuscitation, and reiterate this request, after thorough discussion with an experienced paediatrician about the risks and long-term outcomes, should resuscitation be attempted and intensive care be offered. The treating clinicians must concur that this is an exceptional case where resuscitation is in a baby’s best interests.
(f) Below 22 weeks of gestation, no baby should be resuscitated. For this age group, we consider current attempts to resuscitate a baby to be experimental. We recommend that attempts to resuscitate these babies should onlytake place within a clinical research study that has been assessed and approved by a research ethics committee and with informed parental consent.
(g) When intensive care is not given, the clinical team should provide palliative care until the baby dies (paragraph 9.16).
24 At the time of writing, most babies born at 23 weeks die or survive with some level of predicted disability even if intensive care is given. Survival and discharge from intensive care for babies born between 22 and 23 weeks is rare. The Working Party has no evidence of any therapeutic developments likely to improve the prospects of survival for babies born before 22 weeks in the near future. It is our view that caution is currently required over decisions to treat babies born up to 23 weeks, six days. We recommend that, should professional bodies choose to produce guidelines for instituting intensive care, these should be reviewed regularly and revised to reflect any changes in outcomes for extremely premature babies (paragraph 9.17).
25 The Working Party considers parental informed consent to be especially necessary for decisions to use life support for babies born between 23 and 24 weeks of gestation. If a pregnant woman is unable to consent before the birth because of her clinical condition, doctors should resuscitate the baby. Similarly, after birth, if the mother is unable to consent or if the parents should disagree, resuscitation should again proceed. Once a baby is born, a mother no longer has exclusive responsibility for decision making.
26 We emphasise that our recommendation for the guidelines above is independent of concerns about limitations on resources. It rests on a judgement about what is in the best interests of a child. Just as we find no difference in the moral status of a child of six days, months or years, we find no morally relevant differences between disabled and able-bodied children and adults. Each must be given equal consideration. It is therefore important that all those involved in critical care decisions, especially parents, doctors and nurses, do not feel pressured to allow babies to die because of the risk of disability (paragraphs 2.39 and 9.44).
Footnotes3 Broadly speaking, outcomes for premature babies at the borderline of viability improve with each additional week of gestational age. We intend our proposed week-by-week guidelines to be sufficiently flexible to take account of the variation in (1) how babies of the same age respond to treatment and (2) estimates of gestational age confirmed by ultrasound analysis, which are accurate to within five days (95% of cases) when carried out in the first trimester of pregnancy. We emphasise that a careful prior assessment of each baby and discussion with the parents, before the birth if possible, should precede any action. We recommend (paragraph 9.21) that guidelines should be reviewed regularly and revised, as needed, to reflect any future changes in outcomes.