Critical care decisions in fetal and neonatal medicine: ethical issues
Decision making: the ethical issues
7 We identified four principal issues where an analysis of ethical concepts and arguments is critically important for decision making in fetal and neonatal medicine. All are likely to play some role in the deliberations of the different parties involved in decision making.
The value of human life
8 An important question that those involved in critical care decision making need to address concerns the value they place on the life of a fetus or a newborn baby. There are several different views. For example, some believe that a newly formed embryo should have full moral status while others consider that this is not acquired until a baby has a capacity for self-consciousness, which does not appear to develop until some months after birth. Members of the Working Party held a range of different views on the moral status of the fetus. Collectively, however,we regard the moment of birth, which is straightforward to identify, and usually represents a significant threshold in potential viability, as the significant moral and legal point of transition for judgements about preserving life. In this respect, and independent of gestational age, children of six days, months or years are each worthy of equal consideration (paragraph 2.19). The issue of the moral status of the fetus also raises the question of how it relates to the status of the pregnant woman, and to her duties towards her child. We consider that the pregnant woman who has chosen to continue her pregnancy has strong ethical obligations to protect the health of her future child.It is the view of the Working Party that although in moral terms a pregnant woman acts wrongly in harming her future child by acting neglectfully or in a manner that is wilfully harmful, as happens occasionally, it would be wrong to force a woman to behave rightly by submitting to medical or surgical interventions to benefit a fetus against her will.To introduce laws taking away or limiting the pregnant woman’s bodily integrity or liberty would be unjustifiable and impracticable as sanctions could not be related exclusively to the context of critical care decision making (paragraphs 2.20 and 8.4).
9 The Working Party concluded that there are some circumstances in which imposing or continuing treatments to sustain a newborn 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 a 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. The concept of ‘intolerability’ was adopted to describe situations where it would not be in a baby’s best interests
to insist on the imposition or continuance of life-sustaining treatment when doing so imposes an intolerable burden upon the baby (paragraph 2.11). Reasonable people may disagree both about what constitutes ‘intolerability’ and/or when a particular baby’s condition meets that condition. In applying this concept, in each case an assessment must be made of the individual baby (paragraphs 2.12–2.16).
The principle of best interests
10 The Working Party agrees that the best interests of a baby must be a central consideration in determining whether and how to treat him or her. The interests of a baby often concern whether he or she will live or die, and the quality of life that might be enjoyed. In according particular weight to the best interests of a baby, the Working Party views the baby’s interests in living or dying, or in avoiding an ‘intolerable’ life, to be more important than the interests that others may have in any significant decisions made about him or her (paragraphs 2.21 and 2.28–2.32). However, any decision will have implications for the parents and other members of the family who will live with and care for the child. Parents have interests and it is reasonable for these interests to be given someweight in any relevant deliberations about critical care decisions for a child who is, or who will become, severely ill.
Withholding and withdrawing treatment and deliberate action to end life
11 When healthcare professionals withhold or withdraw treatment in the context of critical care decisions, when guided by the best interests of a baby, the view of the Working Party is that they substitute one form of care for another. Our conclusion is that there are no good reasons to draw a moral distinction between withholding or withdrawing treatment, provided these actions are motivated in each case by an assessment of the best interests of the baby. Either would be an acceptable course of action depending on the circumstances of each case (paragraph 2.33). If withholding and withdrawing treatment is seen as morally equivalent and acceptable in certain circumstances, the question arises as to whether the deliberate ending of life should be seen as equally morally acceptable, given that the outcomes of all three options may be the same. Despite different personal views on whether any form of active ending of life could ever be ethically justifiable, the Working Party unreservedly rejects the active ending of neonatal life even when that life is ‘intolerable’. Furthermore, we unanimously reject the notion that there should be a law or laws expressly and exclusively allowing ending the life of newborn babies (paragraphs 2.35–2.37, 8.40 and 9.20). Medicines such as sedatives and analgesics can have the effect of hastening death, particularly if given at higher doses. This means that death may occur in cases where doctors provide such treatments with the intention of reducing pain and suffering. The view of the Working Party is that, provided treatment is guided by the best interests of a baby, and has been agreed in the joint decision-making process, potentially life-shortening but pain-relieving treatments are morally acceptable (paragraph 2.38).
Economic and social issues
12 Opinions differ on the question of whether economic factors, such as the costs of treatment, should be taken into account in critical care decision making. At the macroeconomic level, decisions must be taken about the proper distribution of what will necessarily be finite resources for the purposes of the provision of healthcare. Any distribution of this kind will result in a given proportion of those resources being devoted to fetal and neonatal medicine. Our view is that economic factors must not be the only consideration in seeking to maximise health benefits. While by no means exclusive to neonatal medicine, additional principles such as equity and justice should also be taken into account by decision makers. On grounds of consistency, the State should not think it permissible to enable many of the babies who are the subject of this Report to survive, but be excused the discharge of its resultant obligation to support their care. The Working Party urges the UK Departments of Health; Education and Skills; and Work and Pensions to accept further responsibility for supporting families who care for disabled children and adults by providing more resources to ensure that adequate and effective services are provided uniformly across the UK. We ask the Departments of Health; and Education and Skills to provide the necessary resources to monitor this provision of care (paragraphs 2.40 and 9.46).
13 Resource constraints arising from decisions at the national, regional or local levels may not always allow healthcare professionals to do what they judge to be best for each and every child. Various situations have to be managed. The Working Party recommends that healthcare professionals caring for babies in neonatal intensive care units should continue to do the best possible for the ‘patient in front of them’. They should be aware of, but not driven by, the resource implications of their decisions. Those decisions should be determined by clinical judgements of priority, which take into account the best interests of the babies concerned (paragraphs 2.43 and 9.43).
Decision making
14 We recognise that emotions play an important part in everyday moral decision making. Decisions frequently have to be made by parents and clinical staff with little time to consider clinical options, and often in very stressful circumstances. Any discussion of ethical issues, no matter how controversial, should seek to be dispassionate and impartial, and have practical relevance to those making decisions. Equally, the great personal significance, the often very difficult choices and consequently, the strong feelings of all who are involved must be acknowledged. In this Report, the focus of the Working Party is on not so much what is the ‘right’ decision, but how should one proceed if people hold different views concerning substantive matters raised by critical care decisions, and who should be responsible for taking decisions, both in terms of the proposed course of action and personal and professional acceptance of the consequences.
15 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. Making decisions in partnership between parents and professionals satisfies several important ethical considerations, of procedural justice, personal and professional responsibility and the wellbeing of those most closely involved. We therefore endorse the ‘partnership of care’ recommended by the Royal College of Paediatrics and Child Health (RCPCH) and the British Association for Perinatal Medicine (BAPM). Uncertainty about a baby’s condition can be difficult for doctors to communicate. Furthermore, 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 takes 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 (paragraphs 2.46–2.48).