Critical care decisions in fetal and neonatal medicine: ethical issues
Best interests
2.21 The principle of the best interests of the child is central to medical practice, child protection and disputes about child custody. The Working Party concludes that the best interests of a baby must be a central consideration in determining whether and how to treat him or her. In legal terms the concept is enshrined in the important legislative and political instruments in the UK that are concerned with children.16However, the interpretation and application of the principle are far from straightforward.
What does it mean to have interests?
2.22 For the purpose of this discussion, interests can be understood in terms of the factors that affect a person’s quality of life.17They are the constitutive elements of wellbeing: a person’s wellbeing prospers or declines as their interests grow or wane.18A person benefits from having their interests promoted and suffers from having their interests neglected.
2.23 In determining how to treat an individual so that their interests are promoted, we may be able to discuss possible courses of action with them and then ask them about their preferences. These preferences also form a crucial element in seeking consent in medical decision making, provided the person has a good understanding of what the treatment involves. However, there are situations where a person may be unable to express preferences, for example where they have temporarily or permanently lost the capacity to understand or to reason or, as in the case of fetuses and newborn babies, where they have not yet developed these faculties. It is in these cases that the concept of best interests has most relevance, and where it is the most challenging to apply.
Interpretation of best interests
2.24How do we know what is in the best interests of a person who may not experience self-consciousness? Parents often talk about their baby ‘fighting for her life’ or, say that a baby has ‘had enough’. Certainly more attention is now paid to a baby’s signals and to recognising that his or her actions may indicate preferences. However, such behaviour is often held to be instinctive and not consciously formulated. It follows that adults must choose for the baby and in doing so they must attempt to determine the baby’s best interests on the basis of the available information. The main types of problem that influence the interpretation of what might be in the best interests of a fetus, a newborn baby or a child are explored below. We begin by considering philosophical issues and what is meant by pain and suffering. We then examine which parties are involved and consider the interests of other parties.
2.25 There are fundamental philosophical and scientific issues concerning knowledge about pain and suffering in other people. Assessments of these states are of great importance in many of the situations considered in this Report. We take for granted that a life free from pain and suffering is in a person’s best interests. In the case of adults, medical information, empathy and the possibility of asking a person to describe their state can support inferences about how they feel. At the same time, pain and suffering are highly subjective, and difficult to quantify in objective terms. These problems are further complicated in the case of fetuses and the newborn, where reliance is placed on information such as body temperature or blood pressure, and where empathy has limited scope. This uncertainty is particularly important in those cases where parties might argue that it is against a newborn baby’s best interests to be resuscitated. Here, the implicit assumption is usually that, from the perspective of the new-born baby, it would be preferable not to continue to live. Such a view would appear to require a high degree of certainty that the state of pain and suffering is indeed intolerable. Moreover these decisions concern what will happen in the future, and often we cannot know with certainty, or indeed with any real degree of assurance, the outcome of each choice we might make.
2.26 There are different parties involved in the assessment of best interests, and even if they agree about the current condition of a child, they may disagree, profoundly and irreconcilably, in their judgements about whether the life the baby might have in the future would be better or worse. 19Healthcare professionals, parents and lawyers have different relationships with a fetus or newborn baby whose interests are being considered. Cases may become more complicated where, for example, the mother has a different view from the father. All parties draw on different facts and emotions in forming their decisions, and may give these attributes different weights.
2.27 Even if there is agreement on what is in the best interests of a fetus, a newborn baby or child, there can be conflicts with the interests of other parties, as we consider below in more detail (see paragraphs 2.29–2.30). For now, we conclude that although there are problems in interpreting and assessing best interests, it is clear that a fetus and a newborn baby have interests and that they must be taken into account. If fetuses can experience pain (itself a subject of some dispute, see paragraph 4.19) it is reasonable to assume that a fetus has an interest in reducing the negative effects of pain and that interest gives us reason not to cause it.20It also makes sense in certain circumstances to ask whether it is in the best interests of a newborn baby to continue all possible treatment, for example when death is thought to be inevitable, or when the quality of life is intolerable (see paragraph 2.16).
The weight of best interests, and interests of different parties
2.28 Acknowledging that a baby has interests is one matter; deciding what weight should be given to these interests is another. Should they be ‘paramount’ as might be implied by the Children Act 1989? If so, best interests might be said to ‘trump’ other principles or considerations. Alternatively, should they be regarded simply as ‘a primary consideration’ as suggested in provisions of the United Nations Convention on the Rights of the Child (UNCRC)? And how should the best interests of the fetus or newborn baby be considered in relation to the interests of others involved in the decision-making process?
2.29 Any decision in respect of a baby will have implications for his or her parents and other members of the family who also all have interests. The Working Party does not consider that the baby’s interests should invariably take precedence over the interests of these other parties. Hence our view is that those who make decisions in respect of a child must carefully consider the interests of all those who may be affected, most usually other family members, old or young, who will live with the child, care for him or her, or are dependent upon the immediate family in other ways. Consider for instance the interests of the parents of a baby who is born with a severe disability. There is no doubt that the interests of a baby are bound up with those of his or her parents, in that the degree of care that parents can devote to their child can make a very substantial difference to the quality of life that he or she can expect to enjoy. While often the adjustments that families have to make when a child has disabilities can readily be overcome, having a seriously disabled child can make a very substantial difference to the kind of life the parents can expect to enjoy (see Chapter 7). Caring for a seriously disabled child may significantly and deleteriously affect the lives of his or her parents: it can mean giving up employment, economic hardship, marital discord and divorce, great unhappiness, stress and ill health for which help from the state is limited (paragraphs 3.35 and Box7.2). The Working Party is clear that parents have interests and that it is reasonable for these interests to be given some weight in any relevant deliberations about critical care decisions for a child who is, or who will become, severely ill.
2.30 Impartiality requires that equivalent interests of morally relevant parties of equal status have the same moral importance, and have equal weight. However, the nature of competing interests requires further scrutiny because not all of an individual’s interests are equally important. In the circumstances concerning the decisions addressed by this Report, the interests of a baby which are at stake are often those of his or her very existence, whether he or she lives or dies, and of the quality of any life he or she might enjoy. These are usually a baby’s very central or basic interests.21Thus, in according particular weight to the best interests of a baby, we are not viewing the baby as more important than other persons; rather we view his or her interests in living or dying, or in avoiding an ‘intolerable’ life (see paragraph 2.16), as more important than the interests that others may have in any significant decisions made about him or her.
2.31 Decisions about whether to continue or to cease providing life-sustaining treatments are decisions between two mutually exclusive options. However, many clinical decisions are more complex and involve many possible options such as what kinds of treatment are most appropriate, and for how long should a treatment be tried. In these cases the best interests of a baby may be harder to determine and to agree upon. This does not mean that the principle of best interests ceases to be relevant, only that it is more difficult to apply.
2.32 If, after careful consideration, all involved in the decision-making process have come to the conclusion that it might be in the best interests of a baby to cease life-sustaining treatment, a question arises as to what may permissibly be done. Are withholding and withdrawing treatment equally acceptable options in moral terms? Do they differ from deliberately ending the life of a newborn child?
Footnotes 17 We leave aside here more subtle discussions about whether promoting someone’s best interests requires promoting all of their interests to the highest degree, or promoting, for example, only a subsetsuch that a basic level of wellbeing is achieved. In general when we speak of ‘best interests’ in this Report, we are not referring to a distinct subset of a person’s interests. Rather we are saying that what is in a person’s interests is promoted to the greatest extent possible and that this may be understood in several different ways.
18 Feinberg J (1984) Harm to Others, in The Moral Limits of the Criminal Law, Volume 1 (Oxford: Oxford University Press), p 34.
19 Parker S (1994) The best interests of the child, in The Best Interests of the Child: Reconciling Culture and Human RightsAlston P (Editor) (Oxford: Clarendon), pp 26–41.
20 Allowing that a fetus has interests in this manner is compatible with holding a range of views regarding the moral status of a fetus as compared with a newborn baby (see paragraphs 2.17–2.20). Nor does it commit us to denying our claim that it would be wrong to coerce or compel a pregnant woman to act in certain ways.
21 See footnote 17.