Critical care decisions in fetal and neonatal medicine: ethical issues
Decision making
2.44 We have discussed four important areas which all those involved in the decision-making process will need to consider. These are the value of human life, the role of best interests, the deliberate ending of life and the withholding and withdrawing of treatment, and the weight that should be given to economic and social considerations. We now turn to the ethical issues raised by decision making in this context, paying particular attention to considerations of how one should proceed if people hold different views about substantive matters, and, because a decision needs to be made, who should be responsible for taking it, both in terms of the proposal and personal and professional acceptance of the consequences.31
2.45 Fair and transparent procedures are crucial for ethically acceptable decision-making processes. In principle, quite different approaches could be taken. For example, healthcare professionals could be required to make decisions based on their clinical expertise without reference to other parties. Or they might simply be asked to follow certain rules, with no flexibility of interpretation (see paragraph 2.57). However, as we explain below in more detail, in the view of the Working Party, these approaches are problematic. No single participant will usually be able to judge the many different factors and nuances that come into play in complex cases of critical care decision making. Similarly, although rules promise certainty, when they need to be applied to a range of varying situations they may be impossible to frame while retaining fairness and accuracy. By contrast, a joint decision-making process satisfies several important ethical considerations. First, the process is conducive to reaching a decision that is in a baby’s best interests in that the different parties can present their views about what they hold these interests to be, and how they think those interests relate to their own. Secondly, a central ethical tenet is that several parties, each with different perspectives to bring, have responsibilities in the process that need to be acknowledged. Thirdly, if all involved are assured that their competencies have been considered appropriately in the decision-making process, there is less likelihood of later regret (of, perhaps, ‘having done the wrong thing’), or if there are regrets, the parties involved can be satisfied that at the time, they had good reasons for the decisions that they made. No less important is that a recognised joint process makes it possible for parents and others to raise objections to the view of healthcare professionals.
2.46 Therefore, for reasons of procedural justice, personal and professional responsibility and the wellbeing of those most closely involved, the importance of an appropriate decision-making process cannot be overstated. We now address the ideal of decision making and clarify the roles of the different parties.
Participants in the decision-making process
Parents
2.47 In general, parents are considered to have the moral authority to make decisions in their child’s best interests in all the circumstances of life. However, parents cannot make decisions on behalf of their children as if they owned them or were merely extensions of their own person. 32Nonetheless they are often best placed to know what is in the interests of their child because of their closeness to him or her and the special bond that they enjoy. This is a bond that begins during pregnancy and develops over time.
2.48 At the time that critical care decisions have to be made, there is often uncertainty about the baby’s condition and prognosis which can be difficult for doctors to communicate. Written information may not be readily available. Furthermore, a parent or parents might not wish to make decisions that result in the death of their baby, preferring that the doctors should make such decisions on their behalf. The Working Party endorses the ‘partnership of care’ between parents and the healthcare team recommended by the RCPCH and the British Association for Perinatal Medicine (BAPM).33 We take the view that, provided healthcare professionals have made every effort to convey the relevant medical information appropriately to parents, where parents genuinely wish to allow doctors in consultation with their clinical colleagues to make decisions on their behalf, they should be allowed to do so. Parents may also wish immediate family members or community or religious leaders to participate in the decision making. In such cases, the roles of additional participants should be discussed and agreed between parents and relevant healthcare professionals at the earliest possible opportunity.
Healthcare professionals
2.49 Healthcare professionals caring for the newborn child also have a responsibility to promote his or her best interests. Doctors are able to offer a prognosis based on their knowledge and experience. Nurses also have special knowledge and expertise, and are the professional group that spends the most time with parents and their baby. They are therefore well placed to provide additional insights into the best interests of both the child and his or her family (see also paragraph 3.13). Other healthcare professionals can offer opinions and prognosis about particular aspects of the baby’s condition, such as his or her potential for mobility or speech. Members of healthcare teams may hold deeply personal views about moral and ethical issues which arise in their work. They may disagree with each other about what is in a baby’s best interests. In the view of the Working Party, the team of healthcare professionals should participate actively in critical care decisions and indicate what they think is best for the child. However, their command of medical knowledge does not make them able to predict the future health of a baby with complete accuracy or give them any special moral authority with regard to deciding on his or her best interests.
2.50 Healthcare administrators at the national, regional or local level are not directly involved in decision making for individual babies and there is no routine involvement of individuals who, for example, have experience of disabling conditions. Clinical ethics committees (CECs) operate in some regions but are seldom involved in individual cases, and only in an advisory capacity (see paragraphs 8.48–8.51).
The process of decision making
2.51 The Working Party considers that all participants in decision making should strive to reach agreement, and every effort should be made to secure consensus within the ‘partnership of care’ (see paragraph 2.48). This is more likely to be achieved if all the appropriate parties who wish to be are fully involved in any discussion, properly understand the facts, appreciate their significance, especially concerning statistical information about the likelihood and extent of disability, and are given the opportunity to participate in the process of deciding. This is in keeping with the normal requirements for consent (see Appendix 5). It means that the weighting given to different interests will necessarily vary from case to case, with, as we have said, the best interests of the baby remaining the main consideration.
2.52 Various measures can be taken to promote trust and the reaching of agreement, such as regular meetings between members of the healthcare team and the family to discuss the goals of care and to make recommendations on how these could be achieved. Good communication is essential and the Working Party later makes a recommendation for further research to find out how participants in decision making act, react and interact with each other, to provide an evidence base to inform the development of best practice in decision making (paragraph 9.48). We recognise, however, that decisions sometimes have to be taken quickly, and it may not always be possible to realise this ideal, particularly where resuscitation is involved. Moreover, agreement about what is best may not be reached, however hard and conscientiously it is sought (see Box6.1).
2.53 If all possible means of resolving any disagreement between the various parties had been exhausted there would need to be, in the final analysis, a procedure to reach a decision. A clinical ethics committee or other appropriately constituted body could be approached if not already involved (see paragraph 2.50). However, in circumstances of persistent disagreement between parents and doctors or an unwillingness to use other procedures, recourse to the courts may be necessary (see Box6.1 and paragraphs 8.50–8.51). The decisions of the courts are guided by a concern to determine what is in a child’s best interests. The ideal of judicial decision making is to be, and be seen to be, impartial and dispassionate. It aims to allow all relevant parties to present their case and have it fairly scrutinised. However, the Working Party finds it difficult to avoid the conclusion that recourse to the courts amounts to a failure, which in many cases could have been avoided by better communication. 34It is not just that an irreconcilable disagreement must now be adjudicated by a third party. A matter of profound importance and great emotional significance must be settled by professionals who are essentially strangers to the child. We therefore take the view that every effort should be made to resolve matters without recourse to the courts. We note ways in which this might be done in Chapter 8 (paragraphs 8.56–8.62).
2.54 Regulations or guidelines are a way in which decision making can be distanced from the influence of the parties involved, before there is any suggestion of disagreement. This would be the case, most obviously, if doctors were required or advised not to resuscitate infants born below a certain gestational age. Such a guideline has been adopted and employed in the Netherlands (see Box8.1) and is usually justified as follows: if it can be predicted with reasonable assurance that the substantial majority of babies born below a specified gestational age will be resuscitated and treated, only to die or be judged later as having ‘intolerable lives’ (see paragraph 2.16 and Table5.1), then it would be better not to take the initial step of resuscitating such babies. Accordingly, such babies could be spared any pain and suffering caused by the life-prolonging treatment (see paragraphs 2.33–2.34). In addition, parents and doctors would be relieved of the emotional trauma of seeing the life of a baby saved only to have to face a subsequent decision about withholding or withdrawing treatment that might make the eventual process of dying more painful for the baby than it otherwise would have been.
2.55 A feature of decision making in neonatal critical care is the uncertainty that is frequently associated with making a prognosis (see paragraphs 3.6 and 5.16). In this context, not resuscitating babies born below a specific gestational age would lead to the death of a minority below the threshold who, with intervention, would not only survive but would not suffer from any significant subsequent disabilities (see Table5.1). However, our problem is this. We cannot know with any degree of assurance which particular babies born below certain gestational ages would survive and to what extent they would develop disabilities, whether severe, moderate, mild or none. However, we do know that the lower the gestational age, the greater is the number of babies who, if resuscitated and treated, either will not survive or develop some form of disability. In other words we can predict the outcome for most or nearly all of a group born at a certain stage of pregnancy even if we cannot know with certainty what it will be for an individual baby. That is why it may be best to use a rule (here, a gestational limit for resuscitation) based on what is known about the group as a whole, even though a particular baby might fare exceptionally well.
2.56 In principle, the apparent harshness of a definitive rule stating that babies should not be resuscitated if born below a particular gestational age can be mitigated in several ways. First, it can be viewed as a guideline rather than an inflexible prescription. It is then possible to take account of relevant considerations in particular cases, such as increased chances of survival for extremely premature girls as compared with boys born at the same gestational age, and improved outcomes for extremely premature babies with certain ethnic backgrounds.35 Secondly, parents’ views can be given a greater or lesser weight in decision making within the constraints of any such rule. For example, a gestational age could be specified above which a baby would usually be resuscitated unless the parents and clinicians agree not to do so. In addition, a gestational age might be specified below which the converse presumption might be made, namely that a baby will not be resuscitated unless the parents make an informed decision that doctors may do so.
2.57 A rule removes from those subject to it the burdens of having to make a decision in every individual case. A rule of the form ‘always do x except in the following circumstances’ is weakened each time that more exceptions are added to the list. The more exceptions there are to a rule the less benefit can be derived from having it implemented as a clear and unambiguous regulation. Similarly a rule becomes more like a guideline and less of a prescription, the greater the discretion in its operation that is conceded to those subject to it. Nevertheless, in the context of making critical care decisions it is always important to avoid insisting upon an inflexible rule with no exceptions. It may be better to have a rule that states a presumption in favour of a certain course of action: a presumption that the rule can be defeated under certain circumstances or when the relevant parties are agreed that it is best not followed.We conclude that, although insufficient by themselves, in principle, rules with certain qualifications can have an important guiding function in the decision-making process between parents and healthcare professionals. They can also be useful in signalling normal practice With this in mind, in our concluding chapter we develop proposals for guidelines for instituting intensive care (paragraphs 9.16–9.19).
Footnotes31 For a philosophical discussion of the ethical issues of deciding for those incapable of making their own decisions see Buchanan AE and Brock DW (1989) Deciding for Others: The ethics of surrogate decision making(Cambridge: Cambridge University Press).
32 Archard D (2004) Children, Rights and Childhood, 2nd Edition (London: Routledge), pp 141–4.
33 Royal College of Paediatrics and Child Health (2004) Witholding or Withdrawing Life Sustaining Treatment in Children: A framework for practice, 2nd Edition (London: RCPCH), available at: http://www.rcpch.ac.uk/publications/recent_publications/Witholding.pdf,
accessed on: 23 Nov 2005; British Association for Perinatal Medicine (2000) Fetuses and Newborn Infants at the Threshold of Viability: A framework for practiceavailable at: http://www.bapm.org/documents/publications/threshold.pdf, accessed on: 31 July 2006. The concept is also embedded in the policy of the National Service Framework for Children and many professional medical bodies such as the General Medical Council (GMC).
34 This view concurs with the response to our consultation by the Royal College of Obstetricians and Gynaecologists (RCOG).
35 Morse SB, Wu SS, Ma C, Ariet M, Resnick M and Roth J (2006) Racial and gender differences in the viability of extremely low birth weight infants: a population-based study. Pediatrics117: 106–12.