Critical care decisions in fetal and neonatal medicine: ethical issues
The value of the life of a fetus or newborn baby
2.8 One important question that all those involved in critical care decision making need to address concerns the value of the life of a fetus or a newborn baby. Is it equal to that of an adult person with fully developed mental capacity? And if not, to what extent would this matter for critical care decisions? Two important distinctions are made in the discussion that follows. First we examine the view that all human life has absolute value and that everything possible must always be done to prolong life. We then examine arguments that support the view that humans have different value (or moral status) at different developmental stages.
‘Sanctity of life’ or ‘quality of life’?
2.9 According to the doctrine of the ‘sanctity of life’,5taking human life is categorically wrong, as all humans are of equal intrinsic value and should be treated with the same respect. There are different interpretations that can be distinguished within the doctrine. Some people think that ‘sanctity of life’ means that although life is of exceptional value, there may be cases in which it can be permissible not to strive to keep a person alive. Others believe the doctrine to be sufficient to underpin an absolute right to life, in both moral and legal terms. We term this the absolutist position. Human life may be said to be sacrosanct for different reasons. Whatever interpretation is put on ‘sanctity of life’, the position is often defended in religious terms, although it can be held without referring to religion. One influential line of argument refers to the view that man is made in the image of God,6and only God may take life.7The sanctity of life view can be contrasted with a ‘quality of life’ view that does not recognise an absolute right to life nor a duty to preserve it, but rather judges whether a life is worth preserving (or having in the first place) in terms of its quality.8
2.10 Both views face inherent difficulties. For those who would place great importance upon quality of life, and that includes many consequentialists, it is difficult to make decisions on this basis as the quality of life is “hard to define and even harder to measure”.9Judgements of what constitutes a life of sufficient quality are notoriously variable. Some people would view life with severe mental or physical impairments as not worth living. However, many severely disabled individuals report that they are content with their lives, which they do not regard as having less value than the lives of others (see paragraphs 3.32 and 5.37). Thus judgements on the quality of life may reveal prejudices or conclusions based on anxieties or preconceptions. It should also be noted that disability is at least in part a socially created and conditioned state (see paragraphs 3.29 and 7.6).10
2.11 As we acknowledge above (paragraph 2.5), we should not expect complete unanimity on issues of fundamental moral concern and members of the Working Party hold differing personal and philosophical positions in relation to ‘sanctity’ or ‘quality’ of life. The Working Party, however, agreed that in relation to the newborn baby there are some circumstances in which imposing or continuing treatments to sustain a baby’s life results in a level of irremediable suffering such that there is no ethical obligation to act in order to preserve that life. The Working Party struggled, as have others, to identify the criteria that should determine when the degree of suffering outweighs the baby’s interest in continuing to live, and to find the appropriate language to describe the threshold at which any obligation to prolong life cedes to a duty to provide palliative care. Following deliberation, the Working Party adopted the concept of ‘intolerability’. It would not be in the baby’s best interests to insist on the imposition or continuance of treatment to prolong the life of the baby when doing so imposes an intolerable burden upon him or her.
2.12 In seeking to understand what may be meant by an intolerable burden the Working Party reviewed the guidance in the Framework of the Royal College of Paediatrics and Child Health (RCPCH) on withholding and withdrawing life-sustaining treatment (see Box2.1). In considering what constitutes ‘intolerability’, we noted that the RCPCH distinguishes between three situations: ‘no chance’, ‘no purpose’ and ‘unbearable’. Where treatment offers ‘no chance’ of survival other than for a short period of time, the best interests of the baby focus on the relief of any suffering and a peaceful death. We consider that to mandate distressing and futile interventions that can do no more than delay death would be a clear case of an intolerable burden.
2.13 Much more difficult are cases where evidence suggests that treatments to prolong life may have either ‘no purpose’ (as defined by the RCPCH) or result in ‘unbearable’ suffering. In those cases, establishing what constitutes a level of ‘intolerability’ is more complex and controversial. The concept of ‘no purpose’ is suggested by the RCPCH for cases in which treatment may secure the survival of a baby or child but only for him or her to endure such an ‘impossibly poor’ life that it would be unreasonable to expect him or her to bear it. For example, the clinical evidence may indicate that any future existence for the baby will be a life bereft of any of those features that give meaning and purpose to human life (for example, being aware of his or her surroundings or other people). Implementing burdensome treatments when faced with such a prospect may be seen as imposing an ‘intolerable’ existence, even in the absence of evidence of great pain or distress.
2.14 An ‘unbearable situation’ emphasises that there may be cases where treatment secures the survival of the baby but only for him or her to endure a life of great suffering and the family believes that further treatment is more than can be borne, irrespective of medical opinion that it may be of some benefit. While the RCPCH recommends that consensus should be sought (as does the Working Party, see paragraph 2.16), the ‘unbearable’ situation would appear to give more weight to the judgement of the parents in decision making. Unlike the
'no purpose’ situation described above, babies in an ‘unbearable’ situation may have greater inherent awareness and potential capacities to relate to others, but suffer extreme and irremediable pain. An example of such a distressing condition might be the most severe form of the incurable inherited skin condition, junctional epidermolysis bullosa (discussed in Chapter 6, Case 8). The intractable pain and consequent disability imposed on a child with this extreme form of the condition could be said to make continuing life ‘intolerable’. The Working Party concluded that in both ‘no purpose’ and ‘unbearable’ situations, continuing life-sustaining interventions could result in maintaining a life that imposed an ‘intolerable’ burden on the baby.
2.15 There are also a number of situations that are both ‘no purpose’ and ‘unbearable’. For example, a baby may show indicators of severe and unrelievable pain that is likely to persist, and at the same time he or she may be incapable of sustaining any meaningful relations with other people and lack any potential for an independent existence. The baby’s suffering is significant and there is no prospect of benefits to him or her in continuing life to offset that suffering. Cases in which the life of a baby in such a condition could continue only by means of intrusive and invasive treatments may be also described as ‘intolerable’.
2.16 Our use of ‘intolerability’ embraces all three situations recognised Biological development and moral status by the RCPCH, as well as those that have features of more than one of these categories. We take ‘intolerability’ to encompass an extreme level of suffering or impairment which is either present in the baby or may develop in the future, and may be given more weight in the judgement of parents or doctors. In proposing ‘intolerability’ as a threshold to justify decisions not to insist on life-prolonging treatments, the Working Party acknowledges the fallibility of language and the uncertainty of interpretation of evidence. Reasonable people may disagree both about what constitutes ‘intolerability’ and/or when a particular baby’s condition meets that condition. In applying this concept, we acknowledge, however, that in each case an assessment must be made of the individual baby. The Working Party regards it as crucial that assessments both of what purpose a baby may find in his or her life and of the degree or suffering endured by a baby are made jointly by parents and healthcare professionals (paragraphs 2.44–2.57). We conclude at this stage that, although a presumption in favour of life is rightly at the root of all medical care(paragraph 2.36), it cannot be absolute in situations where there are clear indications that the life to be experienced will be an intolerable burden on the child (for an illustration of such a situation, see Chapter 6, Case 8).
Biological development and moral status
2.17 The attainment of specific biological thresholds is often held to be of significance in debates about the moral status of humans at different stages of development. These thresholds are used as criteria for when moral status becomes significantly altered and certain kinds of action would be permitted (or not permitted). For example, some people hold that the human embryo from the biological moment of conception has the same moral status as a born living human person.11They place importance upon the formation of one (or more) new individuals with unique genetic identities at the point of fertilisation. For other people, the relevant threshold relates to the earliest appearance of structures needed for the central nervous system to function, around the 14th day after conception, when the ‘primitive streak’ forms in the embryo. Others argue that in moral terms a more developed nervous system should be the focus of concern, such as the emergence of the first components of the central nervous system, and developments in the brain that allow sustained awareness.12 Some philosophers consider that the point of birth is highly significant, as a new and in many senses independent being has been brought into existence. Others contend that full moral status is only reached when an individual possesses self-consciousness.13 As this does not appear to develop until some months after birth, on this view not only the embryo and fetus, but also the newborn baby and the young infant, lack the moral status of a fully self-conscious person. Central to this position is the claim that it is the capacity for self-consciousness and self-valuing that gives humans their unique status as moral agents.
2.18 While these various positions can be understood to suggest that full moral status is either accorded or not, there is an alternative position which can be called the ‘gradualist’ view. Here, the fetus is taken to gain increasing moral status as biological development progresses. On the criteria considered above, the moral claim of the fetus increases as pregnancy develops, with the potential for viability outside the womb representing a significant milestone. A gradualist view might be said to be implicit in legislation that permits termination of pregnancy only on increasingly serious grounds as pregnancy proceeds. It is also noteworthy that it is only from the moment of being born alive that a child is regarded as a person in the legal sense, which some might view as recognition of his or her obtaining full moral status at birth (paragraphs 4.21–4.22 and 8.2).
2.19 It would be naive to suppose that divergent positions on the status of prenatal and postnatal life can be easily reconciled. As we have observed, there is wide disagreement on this issue. Similarly, the Working Party was not able to adopt a unanimous position on the issue of the moral status of the embryo or the fetus. However, we are in agreement that arguments seeking to establish that full moral status is reached only at some point after birth are flawed, whether in the context of a gradualist view or one that recognises only one single morally relevant, empirical criterion. There are serious dangers in seeking to define some point in postnatal development at which the life of a child begins to command full respect, and which strengthens the grounds for sustaining his or her life. Any attempt to define clearly and without prejudice the moment at which a developing child acquires full moral status is likely to fail. Assessments of capacities such as self-consciousness are very difficult to make and hence it would be challenging, if not impossible, to define a single age, or the display of a certain set of behavioural or other features as the critical stage at which the capacity in question is agreed to be present. Since every child develops at a different pace, a judgement would have to be made afresh in each individual case, with all the subjectivity that this would entail. For these reasons, the Working Party regards the moment of birth, which is straightforward to identify, and usually represents a significant threshold in potential viability, as the significant point of transition not just for legal judgements about preserving life but also for moral ones. In this respect, and independent of gestational age, we consider, for example, a child of six days, months or years to be worthy of equal consideration. This acknowledgment does not by itself settle the difficult ethical issues raised by critical care decisions. Nevertheless, it does mean that reasons underlying decisions not to continue providing invasive treatment need to be scrutinised with special care.
2.20 The question of the moral status of the developing child also raises the question of how it relates to that of the pregnant woman. We view the law, which does not allow for compelling or coercing a pregnant woman to save or attempt to improve the health of the fetus she is carrying if she decides against interventions with this aim, as acceptable. 14Clearly a pregnant woman who acts neglectfully or in a manner that is wilfully harmful to her future child is doing a wrong. However, it is another thing to follow that society should therefore coerce her to behave more responsibly. It is the view of the Working Party that although in moral terms she acts wrongly in harming her future child, it would be wrong to force her to behave rightly. 15The legal position on interventions that could benefit the fetus is discussed in paragraphs 8.3–8.4.
Footnotes 5 See Finnis J (1980) Natural Law and Natural Rights(Oxford: Oxford University Press); Kuhse H (2001) A modern myth: That letting die
is not the intentional causation of death, in Bioethics: An anthology, Kuhse H and Singer P (Editors) (Oxford: Blackwell).
6 Genesis 1: 26–27, 1 Corinthians 11: 7.
7 1 Corinthians 3: 16–17; Job 1: 21. See also Wyatt J (1998) When is a person? Christian perspective on the beginning of life, in
Matters of Life and Death(Leicester: Intervarsity Press).
8 See Glover J (1977) Causing Death and Saving Lives(Penguin); Kuhse H and Singer P (1985) Is all human life of equal worth?, in
Should the Baby Live? The Problem of Handicapped Infants(Oxford: Oxford University Press), pp18–47.
9 Boddington P and Podpadec T (1999) Measuring quality of life in theory and in practice, in Bioethics: An anthology, Kuhse H and Singer P (Editors) (Oxford: Blackwell), pp 273–82.
10 There is a substantial literature on the ethics of disability. For an introduction to this topic, which is not addressed in this Report, see
(2005) Symposium of disability Ethics 116 (1).
11 For example, see Catholic Bishops’ Conference of England and Wales (2004) Cherishing Life(London: The Catholic Trust Society).
12 See, for example, Sass HM (1989) Brain life and brain death: a proposal for a normative agreement J Med Philos14: 45–59;
Lockwood M (1985) When does a life begin?, in Moral dilemmas in modern medicine(Oxford: Oxford University Press).
13 Tooley M (1972) Abortion and Infanticide Philos Public Aff 2: 37–65.
14 Within the United Kingdom there are in fact three legal systems: (1) England and Wales; (2) Scotland; and (3) Northern Ireland. See Chapter 8, Footnote 1.
15 Macklin R (1995) Maternal–fetal conflict II, in Ethics and Perinatology, Goldworth A etal. (Editors) (New York, Oxford and Tokyo: Oxford University Press); Bewley S (2002) Restricting the freedom of pregnant women, in Ethical Issues in Maternal-Fetal Medicine, Dickenson DL (Editor), (Cambridge University Press) pp131–48; Brazier M (1999) Liberty, Responsibility, Maternity, in Current Legal Problems, Freeman MDA (Editor) 52: 359–91.