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Central to the purpose of perinatal medicine and neonatal care are three clinical aims: to save the lives of infants with treatable conditions, to minimise needless suffering and indignity, and to maximise the quality of life in survivors. The report of the Nuffield Council on Bioethics on “Critical care decisions in fetal and neonatal medicine”1 and the policy statement of the American Academy of Pediatrics (AAP) on “Noninitiation or withdrawal of intensive care for high-risk newborns”2 remind us of the difficulties, both ethical and clinical, in trying to achieve these goals for infants born at the threshold of viability. This paper explores the key factors in decision making in this area: Who decides on whether or not to initiate aggressive treatment? Who determines when to stop? What standards, if any, should guide such choices? Whose view prevails when there is a conflict over treatment between the physician and the parents?
Though some such as Michael Tooley3 or Peter Singer4 might argue that newborns lack consciousness and thus have no interests or independent rights, the Nuffield Council’s report makes clear its position that neonates are fully human persons and are to be treated the same as any other patient—on the basis of their best interests. The implication is that although parents may (and indeed should) continue to be involved in decision making for their child, they do not have the sole right to demand or to refuse medical interventions for their infant. As the court put it in Re J (A Minor), the power of parents to make decisions is limited to the power to make decisions in the best interests of the baby.5
Use of the term “best interests” itself raises further questions: Who judges these interests? What criteria are used to assess such interests? Are clinicians necessarily best placed (or indeed trained) to judge these interests? The literature indicates differences between clinicians, parents and survivors of neonatal intensive care in how health outcomes are perceived.6 The data also demonstrate clear differences in attitude among professional groups towards intervention in extreme prematurity.7 There are also widely varying practices throughout continental Europe in the treatment of newborns.8 These factors make it imperative that clinicians not only be mindful of the social and cultural factors that influence how information they give might be received by parents, but also be aware of their own personal perspectives that may influence the information they convey to parents. The parents’ response and input remain an essential component in decision making within the neonatal unit.9
While “best interests” is a somewhat amorphous term and there are a wide range of interpretations as to what constitutes those interests in a marginally viable newborn, the Nuffield Council agrees with the AAP guidelines that treatment decisions for these infants can be divided into three categories on the basis of prognosis:
When early death is very likely and survival would be accompanied by a high risk of unacceptably severe morbidity, intensive care is not indicated.
When survival is likely and the risk of unacceptably severe morbidity is low, intensive care is indicated.
In the “grey area”—where prognosis is uncertain but likely to be very poor and survival associated with a diminished quality of life—parental desires should determine the treatment approach.
When both health professionals and parents agree on the level of care for infants in the first two categories there are no ethical problems on treatment choice. Difficulties arise when the caregivers and families disagree on the type of care to be provided. Parents may demand continuation of intensive care when in the medical team’s judgment such interventions are unavailing or inappropriate. Or parents might oppose treatments that the physician believes would offer substantial benefit to the baby.
In either instance careful and sensitive communication between the treating physician and the parents on the likely mortality and morbidity associated with the infant’s developmental stage and physical condition must be the first step to resolving a dispute. Further and continued dialogue with the parents and the wider family if appropriate, seeking second opinions from clinicians independent of the situation or obtaining a clinical ethics committee review, might prove helpful in clarifying areas of disagreement. Legal intervention, as the Nuffield Council notes, is the least helpful solution and is to be utilised only as a last resort. Even then it should be used only when it is believed that what is being demanded by one of the parties is wholly antithetical to the welfare of the baby.
While in the United Kingdom courts generally accord great deference to the judgment of the physician, the experience in the United States is that no court has ever ordered the withholding or withdrawal of life-prolonging interventions over a family’s objections.10 Furthermore, resorting to the courts is a cumbersome, costly and prolonged adversarial process. Bringing a case to court not only ruptures the parent–physician relationship, it almost always destroys the trust necessary to achieve a mutually acceptable resolution of the issue.
Whenever possible, discussion with senior health professionals including an obstetrician, a fetal medicine specialist and a neonatologist together with the parents about the data on survival rates and severity of potential disabilities should begin prior to delivery. Recognition of the limitations of applying outcome data from cohorts to individual cases is critical, with caution also needed when discussing limited data from single centres. Selection of the appropriate denominator when considering rates of survival or long-term outcome is also vital in these discussions. For example, the survival to discharge rate at 23 weeks’ gestation nearly doubles depending on whether the total number of live births or the number admitted to NICU is used as the denominator.11 The unexpected and occasional survival of an extremely premature infant needs also be recognised as just that. Such occasional survivors do not necessarily alter the nature of the general discussion that needs to be had with the parents. All parties also need to understand the provisional nature of any plans that are agreed to antenatally. It is only with assessment of the infant’s condition at birth that the appropriateness of the antenatal plan can be properly confirmed.
If circumstances preclude discussion with the parents before birth, the physician has the responsibility to make an assessment of the infant’s condition at birth and then a judgement on whether or not to initiate resuscitation. In cases of uncertainty, the physician should err on the side of resuscitating to allow time not only for the later discussion with the parents but also to afford the opportunity of evaluating the baby’s response to the clinical intervention provided. Subsequent decisions are to be jointly made on the basis of the infant’s best interests, with clinicians and parents entering into what has been described as a “partnership of care”. The parents’ wishes, while significant, are not overriding. The treating physician continues to have an independent responsibility toward the newborn’s well being. As both the Nuffield Council and the AAP guidelines note, a physician is not obliged to provide inappropriate treatment or to withhold beneficial treatment at the request of the parents without consideration of the best interests of the infant.
Lord Donaldson, the then President of the Court of Appeal, gave legal weight to the first proposition when he wrote in An NHS Trust v. B that even though the parents desperately desire the survival of the child, “…there will be cases in which … it is not in the interests of the child to subject it to treatment which will cause increased suffering and produce no commensurate benefit”.12 Alternatively, if out of ignorance, fear, misguided pessimism or a simple refusal to accept a compromised infant, parents were to refuse a relatively low-level, high-benefit intervention that would save the child’s life, there is no question that the physician should immediately treat the infant and then seek appropriate authorisation for on-going care.
A helpful framework for decision making in these cases is found in an essay by Tyson and colleagues on the viability of very low birthweight neonates.13 Rather than an either/or designation of parent or doctor as the decision maker, the authors propose that the treatment options should be governed by the prospects for the individual infant. To make that assessment, the authors divide treatment decisions for newborns into four categories: mandatory, optional, investigational and unreasonable. The classifications are explained as follows:
Mandatory—If the parents ask the physician to withhold or withdraw ventilatory support that has a very high likelihood of benefiting a child, the treating physician’s independent obligation to foster the best interests of the patient prohibits following the parents’ request. An example would be parents who ask the physician to remove ventilation from a full term newborn experiencing respiratory distress unless the physician can guarantee that their child will be “normal”.14
Optional—When the risks are very high and the benefits are at best uncertain or extremely low, the parents have the option of accepting or rejecting the proposed resuscitation. In this “grey zone” the parents’ decision to either accept or reject ventilatory support should be followed.15
Investigational—For resuscitation for babies of very low birth weight, the outcome data are such that, in the words of Lantos et al, “The best we can tell parents is that this intervention is so new or its effects on this class of patients so unproven that it is an ‘innovative’ or ‘experimental’ procedure”.16 Such investigational procedures, as the Nuffield Council report notes, require parental consent.17
Unreasonable—If the parents are demanding aggressive medical interventions when in the physician’s best judgment there is no expectation of efficacy, for example, on a child born with renal agenesis or one with the Herlitz subtype of junctional epidermolysis bullosa, there is no obligation to provide the treatment.18 Such an action would be not care but an abuse of the patient.19
To these might be added the category of “perinatal palliative care” for cases in which a lethal abnormality such as bilateral renal agenesis, lethal skeletal dysphasia or trisomies 13 or 18 has been diagnosed in utero and the parents desire a live birth rather than termination of the pregnancy accompanied by a fetocide. In such cases a plan for analgesia, feeding (where indicated) and nursing care—rather than inappropriate neonatal intensive care—needs to be agreed upon by parents and the medical team prior to delivery.20
In its report the Nuffield Council spells out its disagreement with the inflexible gestational age and birthweight guidelines utilised in the Netherlands for treatment decisions. It also opposes the Dutch practice of actively ending neonatal life. This is true, the Council notes, even if the baby is born with severe abnormalities or would have a quality of life thought to be “intolerable”.
Partridge reminds us, “It is not clear which infants born at the margins of viability should be resuscitated and provided neonatal care and which should be allowed to die”.21 Some babies survive despite having been born in less than ideal circumstances. Some perhaps might have been born in better condition if delivered, for example, by classical Caesarean section with immediate resuscitation rather than following a prolonged labour and difficult vaginal extraction. This would require a rethinking of current obstetric practice regarding deliveries at 23–26 weeks’ gestation where a “hands off” approach frequently prevails. The known immediate and future risks to the mother would need to be balanced against anticipated but as yet unproven benefits to the infant. However, obstetric and neonatal reluctance to intervene may potentially lead to the worst of all worlds: a traumatically delivered baby without immediate resuscitation who then, because of his or her vitality, goes on to receive full intensive care. The rationale is therefore clear for developing joint neonatal, obstetric and fetal medicine guidance on delivery. This would offer parents and professionals an opportunity to plan perinatal care in a fully integrated way. Such an integrated approach represents an advance from guidance relating solely to neonatal resuscitation.
The Nuffield Council’s report and the policy statement of the AAP provide welcome guidance to help health professionals address the difficult and trying issues associated with infants born at the margins of viability. They do so not with rigid rules but with a realistic assessment of the infant’s clinical condition. This involves an awareness of current data from the medical literature on survival and severity of disability and the limitations of these data. It also necessitates sensitivity to differing cultural norms and family values. Crucially, both documents stress the importance of honest, sensitively delivered information and a working towards agreement between clinicians and parents. As in all medical decision making, the primary consideration in care decisions for newborns is and continues to be a commitment to act in the best interests of the patient.
Competing interests: Dr Ahluwalia has been a member of the British Association of Perinatal Medicine (BAPM) working party on developing a framework for practice on the management of extreme prematurity. Mr Lees is due to contribute to the development of a BAPM framework on palliative care in the newborn. The views expressed in this article are personal to the authors and do not necessarily reflect those of any organisation or institution to which the authors are affiliated.
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