Critical care decisions in fetal and neonatal medicine: ethical issues
Economic and social issues
2.39 A full moral evaluation of the issues under consideration in this Report must take account of the social and economic context if the realities of decision making in critical care are to be understood. What, for instance, are the social consequences of any practice permitting the resuscitation and treatment of extremely premature babies with a high risk of moderate or severe disability? They may include the impact on families of having to care for disabled children, and the additional demands placed on social and welfare agencies. We consider the practical consequences of decision making for parents in more detail in Chapter 7. Based on our discussion about the value of life, we conclude that just as we find no difference in the moral status of the child of six days, months or years, we find no morally relevant differences between disabled and able-bodied children and adults (paragraph 2.19). Each must be given equal consideration. It is therefore important that all those involved in critical care decisions, especially parents, doctors and nurses, do not feel pressured into allowing babies to die because of the risk of disability.
2.40 What role should economic factors, such as the costs of treatment, play in critical care decisions? Responses to our consultation showed that many people are of the view that economic factors should not be relevant, that it is both impossible and improper to put a price on human life. It would certainly be unacceptable if parents were required to take into account the costs to the health service when making a decision about the treatment of their baby, or the future additional costs of social and educational provision in the future. At the same time, there was some recognition that “the use of limited health care resources must inevitably be a consideration” (response to our consultation from the Royal College of Nursing).
2.41 It is important to note that economic factors are considered at different levels of decision making (see Appendix 7). At the macroeconomic or social 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. It is beyond the scope of this Report to consider principles affecting the distribution of resources at the macroeconomic or mesoeconomic (regional and local decision making) levels, although it is clear to us that ‘fairness’ or justice must be one of these. The Working Party is aware that there is active debate on the question of whether there is any reasonable or fair basis for judging that treatment of the very young should receive proportionately less (or more) resources than treatment of adults.29
2.42 Provision of resources at the macroeconomic level to treat babies with a high probability of having some level of disability in the future, particularly if it is severe, has resource implications beyond the sphere of neonatal medicine. These arise from the costs of caring for disabled children as they grow up, and providing support to their families. The Working Party is clear that the State should be expected to bear some of the additional costs of supporting families in their care of these children, as it would be unreasonable to expect families to bear these costs alone. Moreover we interpret the requirement of consistency to entail that the State should not think it permissible to enable many of these babies to survive but be excused the discharge of its resultant obligation to support their care.
2.43 At the microeconomic level, which includes discussion about individual cases, it can be argued that decisions about the treatment of any newborn baby should not be taken on economic grounds but only on the basis of what is in the baby’s best interests. However, resource constraints arising from decisions at the national, regional or local level 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. A limited number of staffed cots within a neonatal intensive care unit (NICU) may mean that continued occupancy of one cot can deny full treatment to a new case at that hospital.30Sometimes a baby who is less seriously ill may have to be transferred to another hospital to make a staffed cot available for a new admission. At other times, clinicians will be unable to find a staffed cot in another nearby unit and they may have to arrange life-threatening transport over long distances. Conversely, hospitals may refuse an admission from another unit because staffed cots are unavailable. However, the Working Party believes that even in these circumstances decisions at the microeconomic or individual level should still be determined, not by economic considerations, but by clinical judgements of priority, which take into account the best interests of the babies concerned. It is crucial that healthcare teams can focus fully on the care of their patients.
Footnotes29 For further information, see Mason JK and Laurie GT (2005) Mason and McCall Smith’s Law and Medical Ethics, 7th Edition (Oxford: Oxford University Press), pp 414–17.
30 We note that it is not usually the number of cots that limits admissions but a shortfall in the number of neonatal nurses. See also BLISS – The Premature Baby Charity (2006) Weigh Less, Worth Less? A study of neonatal care in the UK(London: BLISS). Not only do many neonatal intensive care units fall short of the BAPM standard that there should be a 1:1 ratio of nurse to baby but also currently there are many vacancies in the posts that do exist.