End of life decision‐making in neonatal care

Short abstract

Critical care of neonates

The recently published report of the Nuffield Council on Bioethics, Critical care decisions in fetal and neonatal medicine, is a valuable contribution to the discussion of decision making in the critical care of neonates. Drawing upon medical evidence, the working party highlights the many practical difficulties arising in neonatal care and by setting out clearly the nature of the ethical and other issues arising in this area of medicine, and their relationship with neonatal development, the resulting report has the potential to lead both to improved practice and to better informed communication between doctors and families when they face difficult decisions about how best to treat very premature babies. Based on medical evidence, the working party sets out guidelines on decision‐making about the resuscitation of babies born before the gestational age of 25 weeks and 6 days, dividing this period into four chronological periods: before 21 weeks and 6 days when resuscitation should normally only take place within the context of a research project; between 22 weeks and 23 weeks when resuscitation should not normally be carried out unless the parents request it; at 23 or 24 weeks when parental views should take precedence; and, after 24 weeks when resuscitation should be the norm unless not in the child's best interests.

There are several practical ethical difficulties with this aspect of the advice. To what extent, for example, does the paediatric assessment of the child, intended to play a role in decision‐making about the appropriateness of resuscitation, itself depend on the initiation of resuscitation? To what extent is it reasonable and humane to expect parents to take full responsibility for making decisions about resuscitation between 23 and 24 weeks? On what grounds is it acceptable to attempt to resuscitate a baby <21 weeks and 6 days for a research project, but not when the parents request it for other reasons? Nevertheless, despite these difficulties, and although some members of the British Medical Association have attacked the guidelines as too restrictive and undermining of professional judgement, they have the potential, in our view, to lead to the development of a greater degree of agreed good practice and thereby to constitute an important contribution to neonatal care.

Judging by the media coverage of the report, the issue attracting the most attention as well as the most controversy concerns the ethics of active euthanasia in neonatal care. This controversy arises in part from a request by the Royal College of Obstetricians and Gynaecologists, London, UK that the working party present a discussion on whether active euthanasia should ever play a role in neonatal critical care. The report does take a strong position on the issue and “unreservedly rejects” the precedent set in the Netherlands' Groningen Protocol, which holds that active euthanasia is morally permissible in some neonatal critical care cases. Despite the working party's uncompromising stance, the report does not really constitute the kind of sustained and deliberative engagement with the ethics of active euthanasia envisaged by the Royal College of Obstetricians and Gynaecologists, and in this respect constitutes a missed opportunity.

In rejecting active euthanasia as morally impermissible, the report maintains that in terminal cases there is an obligation to provide palliative care to suffering newborns. However, the report also cites evidence that most healthcare professionals working in neonatal intensive care do not receive any mandatory training in palliative care and that access to care givers who are specially trained in palliative care is extremely limited. This suggests that many neonates who would benefit will not in fact have access to appropriate palliative care, and implies too that the morally significant question of what care givers' obligations are to the suffering newborn if and when palliative care fails to relieve suffering is unavoidable. If the duty to provide palliative care arises from a more general duty to relieve suffering, then on what grounds can the only remaining option for relieving a newborn's suffering in such cases, namely a quick and painless end to life, be held to be morally impermissible?

In support of its position, the working party argues that although no morally relevant distinction can be said to exist between withholding treatment and withdrawing treatment, such a distinction does exist between withholding or withdrawing treatment on the one hand and actively bringing about death on the other. The reasons the working party provides for the moral relevance of this distinction are: first, that the professional guidelines call for the distinction; second, that the working party's position reflects the current consensus in the UK and third that most doctors think this distinction exists. Setting aside questions on the empirical validity of these claims, these are not in fact moral arguments but appeals to public opinion and the moral primacy of the status quo.

Although giving the impression of a solution, within the context of the argument set out in the report this appeal creates more problems than it solves because it rests on an inconsistency. For maintaining a distinction between withholding or withdrawing treatment on the one hand and active euthanasia on the other, the report appeals to the views of doctors, but, in maintaining the absence of a distinction between withholding and withdrawing treatment, it uses an appeal to overarching philosophical principles to dismiss what is in fact the opinion of many doctors and nurses—namely that there is a morally relevant distinction between withholding treatment and withdrawing treatment from a patient for where this has been initiated. Why should the doctors' opinions be relied on in one case but dismissed in the other?

To their credit, the working party does seem to acknowledge that many of the reasons it presents to deny the permissibility of euthanasia are not in fact moral reasons. However, when the report does go on to make explicit moral arguments, these are rather uninspiring. The notion of a slippery slope is called upon, for example, to claim that allowing neonatal euthanasia would open the door to adult non‐voluntary euthanasia. But, for this argument to work, three other claims must also hold: firstly, that adult non‐voluntary euthanasia is not morally permissible; secondly, that there are no morally relevant differences between newborns and adults in persistent vegetative states; and thirdly that no effective regulatory or other mechanism is available to maintain the distinction. Instead of seizing the opportunity to examine these claims, the report claims that the burden of proof to show morally relevant distinctions falls on those who wish to argue against the report's position.

In its second moral argument, the report claims that a philosophical principle known as the Doctrine of Double Effect renders deliberate killing morally impermissible, even in the case of suffering newborns for whom palliative care has failed. As is well known, the Doctrine of Double Effect holds that actions that have one bad outcome and one good outcome may be morally permissible if the good outcome is intended while the bad outcome is not intended, even if foreseen. The working party uses the Doctrine of Double Effect to argue that it is morally permissible for doctors to administer palliative treatment that hastens a newborn's death, but impermissible for them to administer a lethal injection to bring about death. What makes the moral difference between these two cases, the report claims, is that in the case of administering pain relief medication, the doctor merely foresees that the treatment will hasten death, whereas in the case of lethal injection, the doctor necessarily intends to kill.

The Doctrine of Double Effect is a powerful conceptual tool that is useful in the realm of the law and in enabling those with strong moral principles to act with compassion; however, its use here in the context of neonatal care is not unproblematic. For it shifts the core moral issue from concern about the newborn's irremediable suffering, which is the fundamental ethical concern on which much of the report is based, to concern about the moral status of the doctor's intentions. In light of the report's statement that the newborn's interests are the most important ethical considerations in critical care decision making, an extended debate on whether a shift in moral focus from those interests to the doctor's intentions is appropriate could have proven fruitful and may have even, we contend, altered the working party's final position.

Their expertise and experience in the fields of bioethics, law and medicine, meant that the members of the working party were well‐placed to tackle the practical and philosophically interesting ethical issues surrounding end of life decision‐making in neonatal critical care. Their talents are ably shown in the significant contributions the report makes to better understanding of the issues arising in neonatal care, in facilitating communication between doctors and families and in furthering the goals of procedural justice in healthcare. The members of the working party were also exceptionally well‐qualified to engage ethical issues arising in neonatal critical care, as much of the report makes clear. However, this means that it is rather disappointing that the opportunity was missed to enrich and challenge public discussion about the central issue arising from the report, notably: neonatal active euthanasia. To a certain extent, the working party can be said to have complied with the request of the Royal College of Obstetricians and Gynaecologists to set out a discussion on what role, if any, active euthanasia should play in neonatal critical care, but by appealing to public opinion and invoking what have become the standard arguments against active euthanasia, the working party skirted the central issue. As a result, an opportunity was missed to apply the talents and expertise of the working party members for examining the issue of the ethics of active euthanasia through the lens of neonatal critical care, and thereby to take the euthanasia debate to a more sophisticated and challenging level than that exemplified by much of the media debate following the publication of the report.